PC, M.D.: How Political Correctness Is Corrupting Medicine

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Is Corrupting Medicine S A L L Y S A T E L , N.D.

R hfembcr of the Perseus Bcroks Gmup

Copyright 8 2000 by Safly Satel Published by Basic L"l&ks, A R4cmber of the Perseus 13c~oksG r o ~ ~ p

All rights reserved. Printed in the United States of An~erica,No past of this boole lnay be reproduced in ally nl;tmler whrttsoever w i t h o ~ ~ t written per~lzissiictnexcept in tlze case ctf brief cjr~~otcltiorns embodied i:r critical articles and reviews, For infc~rmation,address lldsic Books, I 0 East 53rd Street, Netv Ybrk, NI! 10022-5299.

Library 01' Colzgress Catdlaging-ill-X3~~taIicatioa Data SateZ, Sally L, PC, &$.D.: how yoliticaf correctlless is corrupting mcdirtzle / Sally S,zteI. p. m". Includes bibkitrgrapkical referexlces and irtdcx, XSHK 0-465-07182-1 (cloth); lSBN 0-465-071 8 3 4 (pbk.1 1. Medical care--United States---iZ.fiscelI.~~~e.~. 2. Political cc~rrectness--Uniled States. 3. hicdic.121care-Socid aspect* Unireci States. 4, bt/Xsdicixxe-"Sockirl asye~ts-~-li:aitedStates. I. Title.

To the Memory of

My Mather a t ~ dFather

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Con tents

Xmtrodalction: 2)6i ~ e d ~ ~ i ~ ~ - ~ atozl'our ' d rl3eaEth d~~~ 1 1

PubEic HeaJtl.1.and the Qt~estfor Social Justice

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Inmates Take Oter the Asylum

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Nrsrsing Gradges

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Sisterhood and Pledicinc

5

onal O'Mathuna, Srth Tanenbaum, William DeJong, Steve Southwick, Micholas Eberseadt, 14fallaceSampsoxt, Rcrbert Park, Allan Nssenson, S. Leoraard Symc, Dwid Sund~valf,Jeffrep Ccllrr, hndrcw Madar, Rc~bcrt Gastm, Charlotte Hays, Linda DeGutis, Mary Anx?, Fralich, Edward Brandt, Roger I-lerdman, Lee Zwanziger, Patti Hausman, Theodore Mar-

Rocln, Barbaara Litx, Stevea Ii).man, S t e ~ r nSharfstcin, Ed ~Milfes, David Murray>Robert I,ic&te~, E. Fuller 'forre5 Cralg Nelson, R I U Lebe8; ~ Jonathan Kerner, David iuusto, hiark KZciman and X-jarold Poflack, Ncil Genzlir-xgerand Leah Uels4cy were incisive readers, and Laura Menig a gracious and cnergctic reseal-ch assistant, Jo Ann Miller, e x e c r t t i ~cditor of Basic Books, made suggestions with perfect pitch, Finally, I thank my dear friends and colleagues whose warm encouragelnent sustained me thruughcrut the project: the S o m e r s e s , Barhara Lcdccn, Sally Pipes, iMitchelf Rssenthal, Ncai izrecfnan, Uonald Dos'ksai, Peter Colliee; the iate Ksbert B-yctc, Steve Bunney I)avid Gc1crnte.r; 6)eborah Fried and Rick Martinez, My fellow staff at rhc Clasis Clinic were exemplars of professional dedication. mar, Cad

Introduction f3"CM E D I C I N E - I ~ A Z A R D CTO ~ UYOUR S HEALTH

Poison chemicals, viruses, smoking. These and Etundwds of other things, But what about modern medicine xrAT M A K E S W SICK?

itselR Mow and Inart?,social activists, scholars and even L~ealthprofessionals are telling us that the culture o f medicine is to Marne for many iilnesses, No,they arc not talking about healtl~inwsancc woes, lifieen-minute oFGct visits car rnedieal ~nistabs.Here is what the critics are up to: R

A report in the New Eftgland Jolrrrral of Nedici~leclainls that white men get the best trt'atment for heart disease, Other experts cite discrirlvlinatim in the carc of paticms as a cause of differences in keaIth bet~veenblacks and whites, Women" heal& advc7cates assert that the patriarchal medical establishment has kept wornen from participating as research subjects, depriving them of the benefits of medical breakthroughs.

Former psychiatric patients, calling themselves "consumersurvivors:kcundemn the beahh care systern f i r violating their hulnan rights. They are on a crusdde to "limit the powers of psychiatry by making consumers hl partners in diagnosis and treatrr~er~ tP a

Many nurses allege that they are appl-cssed by the maledominated medical system and thus prevented from giving optimal service to patients.

riT;he 1998 llresidentiali Initiative on Race stated: "Research suggests that discrimination and racism create stress, leadil~g to poorer health in mixacrritics.'3onle public hedth cxperts use this "research" to scoff at physicians who urge people to take personal responsibility for protecting their own health, The common theme here is the 13ealth professiort's faittrfle to make the connection bctwcerz oppression-by society at large or by the medical at&lishment itself-and illness. i t would be one eX.lirag if this were just a dry academic debate with no real-lik consequences, But i"rsn't, The crirics are beginning to i;ashior> a world of poIi.tizally correct medicine, I began to worry about this in 1995 when I learned that some of my fellow psychiatrists at a San Francisco hospital were gmuping illpatients according to race and sexual orientation so that they could organize treatment around psychological needs that kvere supposeclty peculiar to those groups. 'i'his book shows what PC mcdicinc looks like and how the wry efforts to c o r ~ cperceked t problems are making sorne people sick, or sicker than they need to bc. I begin in chapter 1 by examining the philosophy of PC medicine i%yl~cz.cs it is most ti)rc~FulIyarticulated, in tkc schools of ptxbIic health. A forn~erdean 06 the Harvard ScElscal of Public Health has described his instirutbn as 'haschosl of justice.''2 Indeed, it is true that society's sickest peoplc tend also to be amollg its poorest and lnost disenfranchised, but rnany public health experts see their mission iiterally as attacking the conditions that lead to poverty and aliertcation in the first place. "'I'he practice of public health:' says Brown University's Sally ZierIcr; "is the process air' rcdcsigrling society:" i n the assurnptian that social conditions are the primary reason for ill health, she and her colleagues urge the redistributiaa uf wealth to ensure the even distrib~~tion of health. These political renttldies may ayl~calto same-and to be sure, the relation "uctwctn health and social status is nczt c? trivial cane---\~utwhat happens when a clinical enterprise like public health bakes on the grandiose mission of "redesigning society"! For one thing, taking responsibility for one$ awn heateh cumcs to hc virtually ignored, After all, iCAXDS is a "G-

olagicad e ~ r c s s i o nof inequalit)r:hs Saffy Zierfer has put h, W can't hold people accuwntable if they place themselves at risk for contractkg HI\;; the virus that causes the disease, Indeed, wc must understand that using a condom is hardly a priority for those \vhu are "'seeking sanctuafy fra>nl racial hatred through sexual connection:' as Zierler claims." In this worldview, public health experts who want to fight the AIDS epidemic should be promoting social and econorrlic justice, not selficare. Doctors like me, or?,the other hand, who expect their addicted paticnts to stop using drugs and to start using condoms-and if all etsc fails, to usc clean needles-ltre accused of' blaming the victi~as, XR the course of expmdkg the purview of public hedth to encampass the quest for social justice, the academic elite are warping t l x iiadispensaMle ~~isslor-i of their profession: the gractical, here-and-now ~xewntionof injury and disease. This is what we need and expect from public heafrk. 11 is not equipped .@i8 fight widespread injustice and cavlraut squander on a utopian. vision llae energy and resources needed to prekreni and combat the chronic diseases and disabilices fro111 ~rl-nichAmericans are suffering. In PC nredicine the quest for social justice can be mounted on any level, from academic calnpaiglls to grassroots activism. Chapter 2 is about the reforms demanded by a group of people who call thexnseIwcs "the last min&lrity3"forfner ys).~-hialricpatients who once used or ""c~usumeci'" rnental health services and now say they have "survived" thcm. Claiming that the system has abused them, these ""consumer-survivors" compare themselves to the civil rights warriors of the 1960s. hiany revile medication and fight against public policies that rnake sure psychotic patients take antlpsychotic drugs and, when necessary hospitalize them against wdnt nothing less than controi of &L" mentheir will. Constkm~r-s~~rriivo~"s tal health system. Are there problems with that system?As a psychiatrist, I say yes. But the corrsiamer-survivorsare rrzaking things worse for the severely mentally ill, Chances are that xxost readers have never heard of the consrxt~~cr-survivor mowra-lent,but B have dcaiotect a chapter to it because, as we shall see, it gets much of its funding frorn state atxi federal taxes-money siphoned

away from treating menrally ill people who are genuinely sick, often hcfpless and sometimes dangerous. Aided by civil libertics lawyers, the cunsumcr-survivors are acquiring real clout, In Chapter 3 nurses are the ones who daim they are oppressed, To bc s u ~ mast , nurses are dedicated to their jobs, suffer from serious stafing shortages and are worked to thc bone., But a sizauie fraction of them are disgruntled by what they perceive as a male-dominakd system, Their rmzisguided efforts to distance themselues from the rnedical ""ptriarchy" have led to a proliferation of fad therapies and a dumbing-down of n ~ ~ r s l neducation-trends g that can translate directly. into botched diagnoses and care in lnedical centers and emergency rooms. In Chapter 4 we again see women who claim mistrcament at the hands uE a male-oriented socieagc These are the activists behind the modern women" health moxnnent, and as we will see, their complaints about receiving insufficient attention Gom the medical research and health care est;?!slishx.nents have little basis in fdct. 11i s not at all clear that tlae WCJIB~II's health a h c a t e s of today-rinlikc their kisty sisters fra1.n;the 1960s and 1970s who brought US a wclcomr breath of fresh air in Qrrr Botdka, Orlrselves-can faidy point to sexism as a problen~. Chapter 5 takes us to South Caroiina and the problems associated with crack-addicted women having babies, I tell the story of the quest fbr '"so~ia l justice" for hese wonsen---tha t is, the faw)/cr-mounted campaign for their freedom to use cocaine duri~lgpregnancy--a crusade that has trampled sn the best dinical interests of their newbsrrzs ancl of the mothers themselxs. South Carolina was a flashpoint for this drama because it is the only state 1.vhel.c a viable ktus is c o n s i d e ~ da person; as a result, when these mothers take drugs durjng the third trimester; they are technically cortlmitting &ild abuse, As other states grapple with tile rights of late-term fctuses, what happened in South Carolina will 1.7ruvca riveting cautionary tale. Fr0r.n South Carolina we return in Chapter 6 tca k%ri~shington, D,C,> where the federal government is trying to close the so-called health gay. Wh3e no one disputes the fact that minorities, especially M a d ihcricans, tend to be less heallkry than whltes, it is rash to; ascribe this difference

rnainly to bias in the hedth care system or to doctors' subtle prejudice agakst minority patients, There are ample reasons for diffcrcnces in health status-son~e easier to address than others-but the evidence does not supyort the charge of bias. The accusatiotl is noxletheless being lpliade by influential groups rallgitlg from the U.S. Commission on Civil Rights t.0 the Association c ~ American f Medicizi Colleges and by black leaders like the Reverad Al Shrptcan, As if this rhetoric werernk rdivisi-dc enough, some uE the remedies being implemented are deeply worriscrtne, Thc final chapter explores the strange ncw world of psychotherapy for victinls, One aspect of this is iin~ulticulturalcounselingZr a practice strongly supported by the America11 Counseling Association. Multiculttrral cotrnsclvrs presume that nonwhite patients"ersankrl dlfficult.ies largely stem from their efforts to adjust to a racist society. By urging patients to find only extcrrlal sources for their discontent, multicultural cvtalzscling makes a mockery of' self-exploration-the true purpose of therapy--and self-determination. bfost Americalls are familiar with three eras of public health-thc sanitation, biological and lifestyle eras. The first af these, the sanitation era, began in the mid- 1800s and focused on the control of such contagious diseases as typhoid, tuberculasis and yl.tauw fever, It ushered in developrnents like water k?urihcatiorr, reirrse disposal and extermination ul'disease-carrying pests, The late 1800s marked the start of the biological era, when the bacteria that cause specific diseases could actually be seen under the microscope. The first half of the twentieth century brought antibiotics, vaccincs and pasteurization, and with them a series of rapid victories against devastating diseascs such as polio, smallpox and diphtheria, The 2978s brought the lifestyle era, marked by zanlyaigns against preventable injury and chronic illness. The surgeon general took the lead in urging Americans to stop smoking, reduce alcohol use, exrcisc m r e >ear: less Dt, use seat. belts and wear bicyde helmets, Over the last 151) years, millions of lkes have keen saved, inlylroved, and extended by &c public health efforts of these three eras. ?'hrcsugb the honest applicatiorl of science, educittion and a focus on perso~lalrespon-

sikility pubbic health professionats have kept lethal elements from invading our bodies and helped us define the part we can play in preserving our own health, So sweeping were the transforrtlations in Anterica3s health during these eras that they arc properly caJled revoZutisns, Now, at the turn of the twcnty-first century, a faurth era, politically correct medicine, is emerging, powered by the idea that ixljustice produces disease and political empowerment is the cure, In stark contrast to the three revolutions that preceded! it, the hrrrth ""rcvoiiutiots3Yiscedrantcrfeit. '-f'hutrghthe acthists apyear to be waging "the good fight" for better IzealrFn through social justice, their actions do not prevent disease, treat symptoms or perfect ~Iinicalmethuds. At best, they create distractions and waste money; at worst, t h y ixztercere with effective treatment. AIthough the activists themselves may end up feeling better, gratified to have titken part in the struggle for social justice, thcy undermine the Hippocratic ideal: the patient comes first. PC medicine puts ideology before patients. My goal is not to defend the status quo, "l'herc are many prcssiilg prSbIe~ns,lr~cludinghow to deliver hedth care to everyone affordably, But it is critical to understand that injecting social justice into the mission of medicine diwrts attention and resources from the effort to 6nd wttys of n~akirrgeverpne, regarclless of race or sex, betfer off. IJow did the activists-1 call them "indoctrinologists:' since their prescriptions for cure are ideology and social reform--manage to gain their foothold? One way is simple momentum. For several decades the universities, the law profession and the workplace I~avcbeen under assault by people claiming oppression of one sort or another. It's almost surprising that medicine has been immune for sa long. Another way is that the indoctrinotogists" c3b-iectives piay into a well-earned sense of guilt that hangs over the medical profession. Ps~hiatry,for example, has its skeletons in the closet, such as the dismal back wards ctf state mental hosyirals, The reptation of the U,S. Public Health Service stiilI smarts from the notorious Tuskcgee Syphilis Study. Not too long ago women \yere expected to submit, without question, to radical ~nastectomiesand hysterectomies simply bccaersc the (male) doctllr recomn~endedthem.

Finally? PC medicine has flourished because too few irtcuple have becn paying attention. While the nation has becn preoccupied with h a d line-grabbing subjects such as HhfOs, bledicare coverage and the millions of uninsured Americans-all yl-essing issues indeed-the indoctrinakogists haw swauped in under the radar, kVhile it is impmbable than this activi& cCPhm1:of pubjic health professors will ever spark ptlMic leaders and politicians into enacting the massive social refortns they dream of-in short, to equalize the heakh status of all Arncrica~~s by redistributing wealth-their animating spirit is being felt in a number of clinical domains. 'l'heir efforts to adn~inisterPC n~edicine,as we will see, are gdining momentum, and their prescriptions will be hazardous to our heafth.

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Public Health and the Quest for S o c i a

in public: health took place in B854 it1 the Golden Square area of London, which was reeling Gom an epidemic of cholera. At the worst poillt five hundred people died ovcr a ten-day gcriocl, Jiohn Snow, a British physician who ollce attended to Queen Victoria, got a rnap of London and marked the locations of the homes OF cholera victims, Qing clever detective work, he pinpointed the Broad Strect grrxrap as thc sourcc of the backria-contaminatcd water that Snoiv put the townspeodc were carrying by bucketfuls into their pump tan Braad Street out of' commission by removing the handle, and the cholera epidemic stopped virtuably overnight, Snow3 ttrirtn~k?hantremoval of the Broad Street pump handle is the stuff of medical legend. It harkens back to a simpler time when protection from communicable diseases was the exclusive focus of the public health profession. Its tasks were well defined-disease tracking and ensuring hod and water safety-and its victories dramatic*Today puMZIc I^rcalthis still very rnuch concerned with infection c o n t r ~and l epidemiology-the study of diseases in puptzlations-but over the last ccntwy its scope has expanded .to incfudc activities such as monitoring air quality>administcring public health services (such as vaccination pmgrams and communitybased clinics) and preventing chrorlic conditiorrs like asthma, diabetes and heart disease. The effort to avert what were O ~ C Ccaliied social diseases, NE

oil: .rnrt;,M U S ' ~FAMOUS

MOMENTS

such as teen pregnancy, domestic vtofcnce and homelessness, is also whhin the orbit o f publid: health, Since masly diseases and amictions depend direcdy 017 Hiving conditions, 31: was inevitable t l ~ a public t I-realth ~+rctuldoverlap with public policy, Indeed, thc profession has always had a reformist spirit. In colonial times, for cxamplc, lucat governments passed sani-tation laws and imposed fines for selling putrid meat or refusing to drain swamps. By the end of the Z 800s same of those lessons had been fi>i,rgc~tten, In fact, during the antit~~berculosis campaigns in this country, rcfsrmers argued strenuously>and often to no wail, that fighting the disease went b e ~ n personal d hygiene: nutrition, housing and working conditions had to be ifmprowd as well. In the early p a t o f the t%venaiethcentury rhc ""iidustrial hygiene" ntovement played arr important role in condemning the waking cwnditions of many labcrrcrs, such as coal 111iners and fdctory workers, md the needlessly hazardous conditions that resultect in severe injuries, lung disease and poisoning from mercury, radium and solvents. In doing so, these health pr~kssionalsrecalicd t11e spirit of RudoXFVirchow, the nineteenthcentury German biologist, physician and statesman who spoke cletqtlc~Iy about the effect of social conditions s n fitness and health, even catling physicians the ""natural attorrreys of thc poc>re9'2 Documenting these phenomena and calling them to the attention of civic leaden;. is one thing, Some cuzrtempsrary pklblir health experts, however, have gorte much further. As this chapter shows, a cadre of acade~~~ics have put themselves in the business of condcming ""competitive meritocrac):" opposing the free rnarket system, supporting affirl~~ative action and derailing w e l f a ~reEorn1-aB1 in the name of health, Their rationale is simple: since health is inextricably tied to ~ ~ c a P and t h social position, WC shorlld try to equalize power in sctcicti., Hence the theme of the 1996 annual meeting of the American Public Iiealth Association (APHA): "Empowering I h e Disadx311tagcd: Social justice in Public Health."' No orie would secontl-guess Snow's wisdom in disabling the Broad Street pump: it was causing the spread of cholera. Nor is there much dispute that public health professionals should "ntcsnihorair quality or report infectious disease outbreaks or launch educational campaigns to discour-

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age cigrrrette smoking, one af the nrsst potent health risks, cl.n the other hand, mobilizing against economic and social ineq-onities to achieve the distant gaal o f better health is h a d c r to justify*Yet, as wr wifl see, many in the public health elite are puttix~gmore passion into the promotion of yoliticaf doctrine than into d i ~ cefforts t to improve health,

This new activism in public treaftll is the outgrowth of "political correctness:' which has deep philosophical roots in post modern ism. This popular social theory was first impcarted to the U~litedStates through the ~rritingsof Micbel Foucault, the French social i3hilosopher. Foucault condemned the '"orninant- culture'Yor imposing its values un society's pawerless and disenfranchised members. In his view, postmodern man is a mere cog in the sociaJ tttachine, Although he may think in Enlightenment terms that he is ratiollal and self-governing, according to Foucault he is a mcE malleable product of cult~re.3 Certainly the social environments in which people grow up and live exert influence 011 their thoughts and actions. Yet postmodernists see the influence as so stnlng and pervasive that certain1 groups, such as minorities, art perpetual victirns of the status quo. Many university professors have avidXy embraced the postmodern doctrine, CPn cortege campuses it has become an ideological staple in the humanities, fine arts and social studies, Until recently, the apptiecir sciences have been spared, blrt the post113odern trend is creeping into those do~nainsas well: for example, the practitioners uf PC medicine tell us that unless the douninant culture is toppled, we will never dose the health gap betweeall whites and blacks. 1 am by n 0 lneans the first- to describe this wor~dvie~v~ The medical economist Rvbert C;. Evans comments in his 1994 buak $\Ti~yAre Some People I-IFnltl?~?urld OfilersNot! that, "for those on the left, health differentials are markers for sociaE inequality and injustice mol-c generally, and further evidence of the need to =distribute kvealth and povver, and rcstructurt. or overturn the existing social orbed" "Xbat is exactly how Sally Zierler of Brown Unkrsity's L)eparlmemt of conamunity E%e;akthsees AIDS-as "a

biotogical expression of socid inequality." f3urixrg her lecture at the 1999 annual meeting of the American Public Health Association, I copied down her five ~c&~mmendations for curbing the AIDS epidemic: limit the p a ~ ~ e r of coq?orations, cap salaries of CEOs, eliminate corpumate subsidres, prohibit corpora* contributions to pc~liticiansand s t ~ n g t h e ntabor unionse' Tuberculosis is another disease one light call a "biological expression" of disenfranchisement, since it primarily affects the poor, homeless and addicted, Yet it was New York City's hard-nosed derision in the early 1990s to require that cwryone who needed mcdicatim take it dail?j,right in kont o f a health scdorkea; that checkcl TB's spread, 'The workers\utopia envisioned by Zierler would l~avecured no o12c af TB, and it is a ludicrous i3nti-AIDS prescription. try to chi.tnge society in the name of health when prevention strategies are already at hand? Ironically*irzdoctrino%ogistswho want nothirlg less than revo2tltian in the name of health have hcell quick to candeinn practical hygiclze clr forts as dangerous social intrusion. As Paul Starr notes in his sweeping history The Social Ti.arrsforrnatT:08*dqfAnrerrcan Medicine: ""The recent antiProgressive historians, including both Marxists and libcraIs, tend to reclass;& as social control everzts like tlxe conquest of disease that werc once appropriately regarded as histrrric achieven~entsof human freedom. ITI-rcy ~merarbcrthe public health nurse who instrtlcted znorhcrs in inpdnt hygiene as a kind of surreptitious agent of the police, insinuating bourgeois ideals into the authentic culture of the working class:'h That the nurse may have taught noth hers how to prevent their babies from dying, Starr says, we are II~JWsupposed to pass over as secondary and irrelevant, Starr's observation exposes the l~ypocrisyof a muvetnent that condelnns the prevention of infections in infants as intolerable social control yet awmves efforts to organize against capitalism and the ~xeritocraqas pro-health, This paradox nicely captLlres the politidzed eultut-cof the new public health, a disciplhe whose practitioners consider themselves cmsaders for social justice.. As Rmwaa's Sally Zierler herself told a ju~~rrralist: "Those of us who were activists in the 1960s are now professors. This is a way of continuing the work [only) we arc now working froin the inside. In the 1950s we would haare been hiiacklistcd. MIe couildnk have had the agenda we have and be hiredY7

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72hat agenda i s to bring about political change in the lime of t~eafth, ft is typkaatiy advanced in Marxist terms in ~vhichthe world is a zero-sum game: ' " f i e good fortune of some [is seen1 as the cause of ill fortune in others, wllether in econorraic: terms OP in ternns sf health, love, or otlller benefits:'8 In other wards, the good health of the well-off somehow depends 013 the poor being sick, AS PauZa Brawrmana, a physician with the Jnedical school at the University of CaIifarnia at San Francisco, claims, ""iilncss is caused by h e power irnizalancc" inherent in a capitalist sacict;y, "Even if thosc living on the lowcst rung of the social ladder had sufficient rnaterialt resources:kshe said at a meeting of the Atncrican Public Health Associalion, "their hcaith would still suffer because they are d e p r k d relative to otherd"~ccordingly% she urged the a~ldicnccto ""cohxtzleract the free rnl-lrlcet with social progran~s.'~v

Starting in the early 1 9 9 0 ~ a ~new acade~nicenterprise called the ""social prodtaaion of disease'' was born, Many scholars consider Richard G , \%riiilkinson,ymfcssor of social epidemiology at the University of Sussex, the father of ""sacial production theorylW?'hat:theory forms the basis OS the study of social variables, arnong them classism, racism and sexism, that may cnrltribute to discase,l0 V1Tilkimol-r'~seminal 1992 article on the relationship bemeen incamc and health was fclrllotn~cd,as his colleagues gut it, by ""airtuaf cascade of papers."" Social productionism posits two gneral pathways by which social disenEranct~isez1xex~t can lead t.o infirmity and sl-rorter life expcctaxzcy One is direct: through the stress of oppression. The atfizer p a t h ~ v ~is~tbrolagh y material disadvanpage and inferior access to health carc, which take thc greatest tall on the poor and on rminorities, w i ~ oare overrcprclsented among thc goor, It is well known that, on average, people who are further down on the socioeconomic ladder are less healthy and do nut live as long as those above them. But thc questioll is this: Is one's hcalth totally at the lnercy of social forces? Soxne public health experts come extremely dose to saying yes. Rodney Clark of Wyne State University's Department of Psychology asserts that thc emphasis on the mle of personat rcspunsibiliv in main-

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tailsing health constitutes a '"subtler form of racism,'"'" Richard S, Cleiogelr; a plysician with Loyola University Medical School in Chicago, is sixnilarly pessimistic: ""For all intents and purposes, black people in this society are imprisoned by institutisnaf racism; this is the attribute of blackness which at hotto~ndcter~ninestheir heafth:"j I fiorte~lsiaAmaro of the Boston Uzaiversity School of Public Wealth says that '‘women's social staus is a central feature of their risk for X-IIva'14 So powerful in fact are racism and sexism, claim Sally Zierler and her colleague Nancy Krieger, an eyidcmiologist at the Harvard School of PuhIic Health, that they practically lead people to contract I-IfV from dirty ncedtes and unpmkcted sex: ""X rasgonse to daily assaults of racial prej udicc and denial of dignity, women may turn to readily available mind altering substances for relief* . . . Seeking sanctuary from racial hatred through sexual connection as a way to enhance self-esteem . . . may offer rewards SO compelling that condam use beconles less of a priority'qs According to academics like Krieger; Zierlcr, Cooper and ,?;\mare, the fundamentat prescription for kXIV prevention is the eradication of power inequalities in our country. And. as public health experts conduct more rcsearch on health and inequality, s y s Krieger, "a major implication for public healllt intermntion b i l l ] bc policies promoting social and economic justice," M" No one disputes the Fact tlrat poor and dkenkanchised people haw fewer choices. At the very least, they cannot get medical care as easily. Rut is there no roam far them to exirrcise personal responsibility over thcir health! The answer, according to Gladys F-l. Reynolds of the Centers for Disease (:on?trui (CDC), is no. To value s e l f - c a ~is to "king issues of blame to our interpretations of sickness and health:' she writes in the /Innnls of Epidemiology Scaicli~lgher colleagues she says: "We the scienti6c comrnunity are n o different from the public or the media: B7ebring everything we hme been taught by our cuIture-our ~ n o p h a b i aour , huraropkr~bia,our iiacis~n,our sctcjsm, our 'classism: our tendency to 'utherize,' Yet the notion that social farces are xndor deterlstinants of healththat they arc so overwhelming in Pice that personal rcsyonsibility and selfcare are reduced to quaint notions and middle-class values--is one of the most pernicious themes in PC medicixlc,

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WFiLb the Centers h r Disease Control (Reynotds's own i n s t i t ~ i s n ) estimating that at least 50 percent of premature deaths are caused by diseases that have modifiabfe risk factors, it is dowmight rccMess to diminish the vital role of personal betzavior," This is why regarding the yatienb or the public, as a passive victim of malign social forces is a prescription for disaster* Solne of the greatest successes in public heitlth have involved efforts to change personal behavicar by cdt~catingthe pubZIc &out the risks of activities such as smokinf;, unhealthy eatinl; and unprntccted sex. As Richard E%sterraah-k,director of preventive cardiology at klassachrrsetts General Hospital, says, "If p u eliminate thc factors that know about, ivhich are largely lifestyle issues-smoking, high blood pressure, high cholester-d, lack of exercise and diabetes-you can eliminaie sorrzewhere b e ~ e c n70 and 90 percent of disease ir-t our popu!ation."~~ But sctti~lgout to eliminate ""racism" or ""dassism" in the m m e of health leaves a trail of problems. First, the upstream collditions targeted by- indoztrinologists (such as income inequality) correlate with, but do not necessarily cousc, ill health. Indeed, inferences about the causal pathway to a disease "ncccpme less aaad less secure the f'urther upstream one looks for the root cause-tlmus, therc is no guarantee that the social revisions they seek would evca improve health. Second, abstract proposals for artairring social justice have vast repercmssians Eor other sectors of satiety, Unlike discrete vaccinatSon prograrns and cancer screening campaigns, activist prescriptions for social restructuring are intended to go Fdr beyond the confines of ca health care agenda, Third, there is nluch we can do by ourselves to safegr-rad our own health through diet, exercise, safe sex and so on, My hith in such choices and in our capacity to take advansage of them coarres from my work as a staff psychiatrist in a methadone clinic in northeasr Washington, D C , Our patlcnts come from ~ h ""other" c Washington, where violence and crumbling housing yrojecb are standard features of the [andscape. Methadone, a long-acting heroin replacement, is a txatment of last ressr~.for Inany addicts, with the exception of a handful of mentally ill patients, it is the rare patient at our clinic who is clueless about how to get himself together. Itifost have been addicts on and off

far SO Inany )fears that there is Little they don? know about what makes rlmem vtdf nerable ta relaizsc, They know, for example, that boredom is one o f their worst enera~ies-show me a. bored substance abuser, and X'lt show you ssmeotle tvlxo is seriously tl~inkingabout gettirzg I^ligh,Users know that they I3a-w to stop associating with their drug-taking friends, and that it helps to spend time at Narcotics Anonymsus meetings. They know that getting a job is more tlaan just a way to make money, It keeps them busy, out of trouble, &@ling pmductivc and maybe even yurposcftll, Between help-wanted ads anit training prugram announcements, my paticns k m w how to get work, And n~ostof them do, Many of rkesc men and tvamen atss know that they do best when errternal lirnits are placed on "izer-ir,Those who are Emorneless may drliberatety choose tl, stay at a local shelter that requires its residents to work or obtain a vulunteer bb, Such a shelfer also helps them save some of ehcir earnings and tests the13 for drugs on a weekly basis. A handful of patients talk about taking jobs, like truck-driving, that periudicaUy drug-test. Patients who get a rcgular paycheck have thcix employer deposit it directly in their bank account so that they have no tempting cash on hand, These are just some of the barrierti that patients erect between f l ~ m selves and their drugs, Not all o f tI~ernwant to take advantage of tl.aesc techniques and the niyriad otlzer ways 1.0protect themselws, bu t- xl.rnaIly paticnts choost: to do so, Is it hard work? &st assuredlyybut what can PC: medicine offer thcm insteacl? Simply thc demoralhing message that drug abusers truly don't have a choice or a chance-that is, until sexisn~and racism disappear and inequalities in w e d h are abolished,

Advocacy i n Academia---Part 1

The blurring of the boundaries between scholarship and political action is an cw-present risk in the classrooms o f indoctrinologists. klindy Thompsolz-Fullilove of the Columbia University School of Public Health exhorted her colleagues to "in\rent a new science that embodies human rights and civil rights essential to fke fiealth of Lauman ~~c>pulations."~~

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Vincel-ttlacapino, a physician with the School of' Xkb'oc Ilealth at the University of Califorl~iaat Bcrkeley, speakil~gat an American Public Health Association panel calIec1 ""Pubting Politics Ba& into Public Health Education:' urged "merging the acade~nywith advocacy."" He referred to the World Health Organization's oft-quoted definition of health-"a state of comylcte physical, mental and social weW k i n g , not merely the absence of diseitse or infirmityn--as justification for doing so. Such an expansi'c~edefinition of healtla probably explains why Delrorah Prothrow-Stith of the Harvard School of Public Health gets so impatient with her colleagues: "At our worst, yltbllc heakh professicsnals can be self-righteous know-it-a1Is: emphasizing a violence y revention curz-iculrrm when people want and need jobs and economic dcvclopment; focusing on lead paint re~novaiwlren people are homeless; preaching abstinence when people are Ioctking for someone to love them, . . . We sometimes just don't get it:'" Pruthrow-Stith is right in nanling honrelessrtess, joblessness and insufficient low as causes of muck suffering, But the job of public health is to prc"v@ntinjury arid illness in practical ways, including making the public aware of risks for accidents and disease and ways to nlinimizc them, 1x1corporating abstract, broad social goals into schools of public health will only divert them from imparting their practical mission to students and society, "i%Tehave alearly converted the scbwul of public health from an institution committed to developing the scielltitic bases for disease yrevention into one of many arenas for advancing social justice, or some people's idea of social justice:' writes Philiy Cole and his colleagues of the t3ublic health. school of the Uniwrsity of AXaballla at Birmingham,"" Here is a sample of what Cole is referring to when he s q s that academic public: heaIth is increasingly devatcd to ""sale people's idea of social justice:' In her statement explaining why she should be elected to the APHA governing board, Mary Rnne b1ercer of the Scl-rcoof of Public E-Ieallh of the University of iVa;ts't-ringtolzat Seadtfe Nrrote that it w a s ""painful to sec the =cent welfare "reform"pass witllout an effectiw re-spsnse from the public health community.'"Z" At the 1998 ane--l~~al APWA meeting, Sally Zierler told audietlce rnembers that their goal as public

health professionals should be to overthrow the ""comgetitikie n~erifocracy," Wi1y? Because, in her words, 'hneyual distribution of goods and services and property and profit means that deprived populations are i e s ~ able to reduce [HlV infection] in their community."'" Dillrid G , FVhiteis o f Indiana-Prrrdue University il~aotbersocial production rcaearcher,'nas proclaimed that any public kcaltb policy that ignores ""social justice is unworthy of the raarne,'%%iteis literally calls far the designation sf ""pverey as a rncdical pathogea."I"hese matters make Inorc apprclpriate su5ccts for politicians and activists, but indoctrinologists like WFhiteisinsist that they lie squarely within their gurvie~.cd~ After all, the argument goes, since the health status of a population is closely related to wealth and social position, irnpsvving itcaltb depends on political en1pe7;\verme11t,~~ This reasanrr~gis rc8ectc.d in the bmad defir~itionsaf public health that experts have put forth over the years, In 1920 6,-E, A, MPinslu~~ of the Yale School of Public FTealth proclaimed that, in addition to disease prevention and iafectian control, the prukssion should address the ""dveio p e n t of the social, machinery which will crrsurc. to e x r y individual . . . a dandard af living adequate far the maintenance sf health?" Oathers idemtificd "¢ housing, adequate hcomc, freedom from war" as part of the puhlk health mission," Anrguing for a redefinition af thc field half a century later, Cad M, Shy of the Universitgr of Nortla Carolia~aSchool of Ptabiic: Health said it should be the ""stpndy of the distribution and social determinants o f the health stattrs o f pogu2ations.""o Perhaps the most expansive outlook belongs to the forrrler CDC director WiXIiam H, Foege of h e Emory Ulli\7ersity School of Public Health in Atlanta. "Every problem is a public hcalth pn~blem:' he said in 1993. ""Our job in pulflXie heal& is to be indignant on behalf of everpne,""" If Faege were correct, then it would indeed make scnsc to look to public hcalllr to solve all of societyS problems, According to Lawrence Wdllaclic of Pofeland State University and Eori Dorf~x~an of the School of Pubfic T-Iealth of the University of California at Rerkele); "The practice of public health is, to a large degree, the process o f redesigning society. . . . It is Inore about closing the 'power gay' than the 'knowledge ga17."'32 Academically

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speaking, postmodern medicine is best suntmed up by frjarvcy V. Fineberg, former dean of the Harvard School of Public Health: 'A school of public heal& is like a school of jwstice;""'l If it is the rraturt? of a social movemerzt to advance ever more expansive definitions of the yrobleln over which it seeks to provoke public outrage, then public health, as eszvisionecl by the academic etitc, is wry much a social movement, Moreover, it is a xalob1enlea-ftisr which social reform and utopian vision often ~nasqurradeas health policy, This is a dra~naticdeparterre from the fciwding missions of the APHA and schools af public health, XR 1872 several physicians fisrmcef hi:h r r i c a n PUbIic E-Iealtla Association to promote the "'sanitary sciences: and lhe following ).car t l x cnatilrtr~Sfirst public hcdth journal, T12e Swnitariml, made its appearance, T'hc rapid progress in understanding the lirllcage bet~reembacteria and contagious dixascs hastened tkc development of ncw approaches to public health, so that by the turn of the nineteenth century it was becoming clear that specialized training was needed to perform the job of pu1,lic healtla officer. In 1916 thc School of Hygiene and Public Health was fomded at Johns Hspkins liniversiv, and soon Harvard, Yale and Gdr-smlaia had estaMlshed such schcaols. These institutions h a d a yragmadc focus on reducing disease and maintaining health, In pursuit of these aims, variorrs disciplines came together in one academic setting: epidemiology to trace outbreaks of disease; vital statistics to measure birth and death rates; diagnostics for identifying contagious diseases; and bacteriolcrgy, toxicology, sanitation and food and wakr inspection. Public healtl~was thus a discipline af inquiry and practice, not a saciopoiitical rn~\~ernent, True, progrcssiw city health departments in the ntid- t 8(iaDs, such as New Yorh-ks, n~ountedactions against disease-promoting filth and congestion. And in the 191OS the APHA joined in the fight to influence government to amclisrate unhealthy factory condi"rions and elir~iaatedecrepit and overcrokvdcd bowing. But these were practical reforms that addressed obvious and direct causes of illness and were driven by the recognition that dismal living and working conditions led to poor health. By contrast, the currents of politi-

ca2 correctness now flowing through scfno01~OF public health and the APHA are gellerated not by local pragmatism to change rcal circumstances hut by a global ideology to manipulate the way people think about disease ancl i t s remedies.

So uncomf'ortable with social hierarchy are the PC academics that when they do field research (for example, comparing the effectiveness of two tllV prewmtion programs in a commua?ity), they bend over backmrard to deny the simple Pdct that thc researchers generally know mare than cammunity leaders about how to do a study. "Socially and econo~nicallymarginillizcd comrnktnitles often have not had the power t s name or ddine their olvn cxpcrlence,"' states Barbara A, lsracI of the Uni\rcrsity of Michigan School af Public Heahh, Her prc'scription: "Mlparties /shuulidj participate as equal members and share control aver all phases of the rcsearch proccss""Uhcc~rding to Ernest 7:Striqer of Curlin Liniversity in Australia, the special trajnixlg in inquiry should confer no special ro1e in dettr~nininghow the pmject should be designed. "All participants:' he says, "[should] share the perquisites of priviiegci3'5 'This research style is known as "participatory research:' Unfortunately, not all parties are qualified ta participate.. ""Smetimes community Iwders push a study qucstiun, but it is unanswerable because they don't know how to fm'ame a hypothesis, aperationalize variables and a d y z e data:' according to a program director at the 1i.S. Department of Health and Htlrxan Services (HHS) Office of Matcmal and Child WedtX.1tvho did not wailt to be named, "When you yoillt this out, they car1 get very offended,'? Me Douglas Anglia, an addiction researcher at UCLA, expcrienced his own frustrations with local groups involved in a large-scale treatment project. "MTe spent hours educating members of these groups, one by one, on the limits of epidemiological research, They all loved the idea that they gat a vote in dcsigrting the project, but we had to kGcp saying that p b t cannot do science by consensus if you want the work to be crediblc*'"""

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Uilt without coilaboration, exnpolverment researchers s a b the):

~rouldnot be able to achieve one of ttlieir major gods in attending to social inequalities through empowerment, How best to empower, InssVewxa is a subject of considerable debate. As Msredifh Minkler and her colBeagtrc Nina \&'allerstein of the University of New Mexico ask, "Can people in positions of dominance or privilege derrried from ~ ~ l r tg ~e nrd~e ~,race, or class empower others, or must people empower themselves! If empowerment i d u d c s the dinlension of trans-fcrring power to others," they assert, "professionals may necd to let go of their owl1 powcr to make it more available to otf1erse"37 The implication of all this, Professor Cole of the University of AIabama paints out, "is that nothing lies outside the realm of public kealllr.'" Such mandates m a k schools of public- health 'ball-inclusive, diltiks their resources and blur their focusi'lVs Donaid E. Waite, professor elneritus of family medicine at Michigan State Ulliversity College of Osteopathic Medicine, larrlented to me, "The field has beer1 co-opted by confused visionaries who are seekl'l~gwhat they view as a socialist ~tctpia,'"~Vndeed, epidemiology is being transforlned from the study of disease in poyulations into a science far converting empirical findirrgs-such as the demonstrated linkages between economic status and lrzcaltfl-into a pmgram of social i%ctic~n~~~~l XI is a prograIn whose barely corrcealed contempt for practical clinical achievement prompted the epidemiologist Kcnneth Rothman and his coflcagues to cxprcss nhcir kustratiun: ""Itis rcrnarkable that [we] are now chastised for our scientific accomplishments, which include such victories as the claburation of the effects of tobacco srnokirsg on many diseases, and the effect of foiic acid on neural-tube defccts. Countless other fragments o f useful epidemiological knowledge have enabled many people to improve their bedtth even if they cuutd not avaid poverty and repression:'"l Along with scltools of public health, academic journals arc also risking their reputation as neutral arbiters of scierlce when they p~~blish second-rate studies purporting to show that the haves are literally makir~gthe have-nots sick, Indeed, race and ethnicity research has been criticized by rnany scholars for "lack of rigour in conceptualization, terminology and

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interpretation; according to a survey by 'Prude Bennett and Raj Bhopaf af the medical school at Newcastle-upon-Tyne With its strong emphasis can nonperformancc criteria in admitting students to schools caf public health--the Alnerican College of Epidemiology itself decries the '"cornpetitive meritocracym---there is reason to worry about standards of scholarship."-" 'The social production of disease seems w c l on its way to becoming the acade~nicarm of the social justice nlove~nentin public health, 'The gatekeepers of the scientific literature-the editors and peer remsrst be aXert for weak science and far advocacy masquerading as scholarship. "These men and women are the safeguards against researchers indulging h e i r idcaiogics;'" says Dwid A. Savitz, praofessor of epidemiology at the University of North Carolina. "Mixing scientific and activist roles not only threatens the valicliv of our work, it SOWS doubt that our methods are even capable of rigor,""%Alexander M. TbVdlker of the Maryard School of Public FIealth acknowledges that public health researchers may have to draw on discipiincs such as econcrn~icsand sociologyybut he rightly insists thar ''W need to [ C ~ O O S C Jtheorics that can hc challenged and ref1.nte&,"45 This is not to sap that social productiorl research is inevitably weak. (Jarefuf cpidemiutogists have produced Grst-rate analyses using social variables, suc11 as accurnutated wealth, educational level, church aNiliation and com~nunitycohesion. The prevalence of vellereal disease, for example, has been strongly f inked to sigrcls of neighbarhood deterioration (such as garbage pilcups, graffiti and abandoned cars) independetlt of the local powrty indices."" These researchers know that variaibles must be nleticuBously defined and measured, A variable like "feeling discrinfinafed against,'%huwver, is hard to measure and vcri& because it rdies on a subject's inferences a b o ~the ~ t attitudes and intentions of ant~therperson (the yotenaial discriminator), Not surprisinglg~,society can act as a Worschach test pattern upon which individuals project their expectatiol~sand fears. For example, UCLA ant h r ~ p ~ l o g ifouxcld s t ~ that many black iustomcrs interpreted the "relative restraint" of the demeanor of Korean American storekeepers as a sign of

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racism. Cu11\7crscIy>the storekeepers tended to interpret the "~latively personaMe introhernent" of the Hack patrons as disrespectful." How to separate such projections Gclm true (intentional) racial. discrimination? The National lashitutes of Health (NTI3) "ns recently taken on tlsat de~xandingtask. The agency is now a~vardinggrants ta study the relation-ship bettciecn health and "powerlessness;" ""ctiscrimination:" ""radsm3'and "classism."" The epidelniologist FJavid Savitz believes that this research could be useful, though he acknowledges how dificult it is to do properly Hi: urges peer rcvicwers and editors who judge the findings from such studies to maintain rigorous scientific standards,

Ca@ Racism M g k e You Sick? Onc awntnc of social pmduction ~ a e a r c his thc health effects of racial discrimir~atiern,Blood presstlre is a good condition to evafwte in this cantext because it is easy to measure and responsive to stress. M ~ r c ~ v ehigh r, blood pl-cssu~,also called hypertension, is two to three times morc likely to afii'fliict black Americans than wtrites, I:uriausl.y2 even when known risk Fdctors such as diet and exercise are taken into acccnullt, blacks are still Inore likely to have high blood pressure. Several explanations have been posed--most often genetic predisposition or diet or a combination of the ewo-but the issue has continued to intrigue medical researchers. In 1996 Nancy Kriegcr of the Harvard Sclzoul af Public Heaitl.2 and her colleague, Stephen Sidneb a physician at a. Kaiser Foundation Research Institute, claimed to have sotved the wtlitc-black blood pressure przzle: racism was the culprit, 'The stress of being a victim of racial bias, tl;re)rsay?corxXd explain the higher levels of hyyerte~lsianwithin the black population. Krieger and Sidney's study "Racial Discrimination and Blood Pressure" appeared in the Amencrrin I:)UTMOICL(PubllcNrmlfh, and it made news instantIy*49 "Study: Discrimination May Cause I-Iypertension in Blacks:' declared the t~VhsiairrgtonVc,sl;"(' National Public RacZio broadcast a lengthy report in which one psychologist interviewed about the study said, "PVe now I~aveconcrete data showing that what society does to you affects your

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heaftk."'~'The study has been widely cited, including in a t 998 report fronr President Clintank Initiative 012 Racc, which stated that ""~esearclasuggests discrimination and racism create stress leading to poorer health fin 11%narities].""" Brent Staples, an editorial writer at the New Brk-Tinzes9wrote a column titled "Death by Discrimination? Of Prejudice and Heart Atm tacks.'"Vh~hrcc: years later Staples was still commenting on the study's findings, going so far as to remark that "the medical system has yet to list 'racism' as a cause of death [even though) some social scientists now see tension ~ l a t c dto discrimination as a health hazard on par with smoking and a high fa.t diet."" It is not unreasonable to think that the stress of being a victim of discrimination eouiid produce certain kinds of illnesses. After ail, it is W& established that many key physiological processes respond .to psychological stress." For example, our in~rr~urle arrd hormonal systems and cardiovascular functioning can be affected by emotional states, And indeed, since the Mriegcr and Sidney article appeared in the Fdll of 1996, it has gracticaiily become ra medical truism that racism c3oesr1't just make its targets sick at heart but can make them pl~ysicallyX i 1 as ~rcll.5" As we will see, however, Krieger and Sidney's claim fails to pass scientific muster,

Blood Pressare and Racial Discrimination IYhafi cifidencc do Nancy Krieger and Stephen Sidncy put k r t h to support the cancIusloass they drew in their much-discussed t "36 artidc"r'They collected information on some fc~rty-onchundred black and white men and women between the ages of ti%fenty-fiveand rklirty-seven who byere questioned about their ""exyeriences of racial discrimination and unfair treatment:' The researchers asked, for example, whether the subjects had "ever been yrcventecl from doing somerhing (hrexample, getting a job, securing housing) or been hassled or made to feel inferior" because of their sex or race. Tkcy divided their subjects into e h ~ groups e based a n the number of times they reported having been victims of racial discrimination owr their lifetimes: zero episodes, one or two episodes, or t h e e or inore episodes. Meanwhile, known risk factors for high blood pressure such as

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0besi;r)i and srnoking were t a k n into account so that they w u t d not skew the results. (The researchers, li~owever,on~ittedsalt intake, which is one czf the major deterlninams of bioasd pressurc leveis, particularly in African Axr~ericans,) 'X'hc authors looked at inldividual blood gressuf.;. readings withrn the groups to see whether thc levels correlated with the subjects' experiences of bias. The),. assumed that the incidents perceived by sut~jectsas discrianinatory i>rudrxc;edan equal amount of distrclss in all of them; othenvise, thex would be no reason to hypothesize a linear "dose-response" relationship b c t ~ e e nstress and blood pressurt., But this quesCimablc assuqficln became even more tenuous oncc the relationship between blostl pressure levels ancl the reported episodes of discriinination was revealed, Instead of shucaiirlg a dear- linkdge between blood pressure and discrimination, the rcsujts were all over the map. Black working-class men and Fvomen who reported zero episodes of discrimination had higher blocrd y ressure readings than those reporting one or more. Black professional woxncn who reported one or twcz episodes of discrimination had lower blood pressure readings tlzan those with none s r with three or more, And bilack prokssional men with one or two episodes of discrilnination had higher rcadings than those with nolle or with three or more, Krieger and Sidney also asked subjects hrlw they ~ s p o n d c dto being discrimixlated against: Did they ""ds nothing about it" or did they "balk tu someone about it"! Again, the results were scattcrshot. The llighest blood pxssures sverc. found among black working-class women who "did no&ing:' while black working-class men who "did nothing" had lower readings, Thus, in order to align the findings with the theorb Krieger and Sidncy had to assume that tkc subjects undcrrcporrecl discrimination, either because their experiences of racism Iverc "too pF7aiE1tX IQ talk about'" or beca~~sc somehow the subjects felt they deserved ta be t ~ a t e dunfdidy because of their race, a y rocess called internalized oppression. (The possibility that sorne subjects awrreporteci episodes of discrimixraticsn was nut esztertained,) Krieger and Siclney's assumptions about wily subjects did s r did not report certain experiences raise a red flag: conveniently, they can be used

to explain awdy any finding thal does m t neatly fit the expected direction of the data, it is a standard rule 06 research that hypotheses must survive i3ncmpts to ClsiQ them bchre they can be regarded as true (more precisely?as highly probable). In atfizer words, Krieger and Sidney wadd have had to show that subjects reportillg nonc or few episodes of discrimination did so br reasons other than that talking about such tr-eatment Lvas "too painful" or that they felt undeserving of respect. The catch is that inkrnalized oppression, by its very nature, is not falsifiablc, After all, hrw could Kricgcr and Sidncy possibly know that thcir Hack subjects were in some way thinking tktcy cdesewed mistreatment because of their race, especially when they were apparently unaware of those thoughts themselves! Nonethelas, the researchers confidenlfy conclude, ""Our resuf ts irldicate that raciaMiscrimination shaper; yatkrns o f blood pressure among the U.S. Black populatio17i"7 One more observation, "Thesubjec~sstudiecl by Mriegcr and Sidncy were healthy rnen and wornen tlrlder age forty with normal blood presSUES, In fact, the average blood pressurc readings recaded-109167 for black women and 1 15/71for black men-would makc any internist very happy, the ideal reading being 120188. As these Ivartlen and men age, it is likely that many will be diagnosed with hypertension (140/90 or higher). But those who dewlop the condition can count on this: if they fnithfukly take care of thexnsekves, they will do a lot more for their heahh ixl a matter of weeks than could any campaign for social equality. Research continues to show that self-management through medication and diet has considerable impact. According to the NII-1 "flypertension Detection and Follow-up Strrtdy,'"tkc ink~erscrelationship bct~veen educatisnissciscco~~omic status md ~Icvatcdlbiood yressurts disappears when patients take blood pressure mcdicatioxz,'%~nother large study called "Dietary Approaches to Stop Hypertension" (or DASH-Sodium) found that eating lcss salt can significantly duce blood pressure." %mtimes a. low-salt diet can, by itsell; correct high blood yxsstlre, especially in black patients, who tend to have "salt-scnsitivc" hypertension luore often than whPit~s,"OThus, pharmaceutical anad dietary changes can literally save Iives tndajj by averting stroke or heart attack.

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The Redistribution of Health? In adJition to physiological changes supposedly engendelrd by the stress of oppression-the changes that Krieger and Sidney claimed to have found amid their scattered data-ET medicine emphasizes the relationh , be sure, those higher up on the socioship between health and ~ ~ e a l t% economic ladder, on kiveragc, enjoy better heaftk thalz those below them, Rut does this mean that inhabitants uf the lower rungs are necessarily doo~nedto ilrkness and disabifity? Is it true, as Dczvid Fnitcis of Indiana University says, that thcrc is something aborrt pcwcrty ig-self that makes it a health problem! If so, would redistributing wealth (beyond simply exte~~dirtg health caverage) make poor people healthier? A sizable numhcr of public Ilealth cxpcrts think so and advocak as much in a 15399 collection QC essays catled The S o c i e ~and ) PopuEntiotz Healftl Reader: hclame ff2qunlif-y arid FBealtff,"The higher I-teaith achievement of egalitarian socieeics makes a persuasive case for the rcdisrrihution of incorne:klainl the Reader" editors, who are from the Harvard School of Public Health md the Uniwrsity of Sussex, England."' (;XearZy,this is a conlylicded and politically delicate issue, With that in mind, Let us explox the basic interactions bet~reenhealfIa arrd wealth, In general, the wealthier one is, the healthier one is. In Idondonduring the Black Plague in the 1660s,the wealthy had the mealls to flee the infested inner cities; they also benefited from better aamritioa and sanitation, which made them more resistant ICJbubonic plaglle and more likely to survive if infected, In the modern em, too, walth gives people access t~ betkr health care, better- nutrition and better li\iing and uccuyational conditions, Convcrscfy people who are healthy are. mare 1&cly to hold jobs and tct work connpetitively>activities that help them advance their socioeconomic pusirioll and, ir~turn, protect heir kc~~lth. Sociologists caf I this the healthy worker effcct. Thc pattern is especially obvious among the elderly members of mirsority groups. Because of pourer health histories, they arc much more tikefp to lose functional ability than are whites and so arc unable to generate income in their senior ~ears.5~

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'The overall prohabiEity of dying bet;v\leen the ages of twenty-five and sixty-four has been declining since 1960, but poor and poorly educated people stilt die younger," "This phcllomenon is relakd to a host of factors otyerwhich people have mirnimal day-to-day control, Fur erample, lowpaying jobs tend to have less flexible hours, making it difficult for the w o r h r to fit in cfwtors' agpointmenzts or take thc day off whcn they have the flu. Simply finding a reliable baby-sitter in order to take two city buses to the doctor carit be a mi3jor task, kor-er people cannot aff0t-d to buy bigger, safer cars, and they are more likely to bc the victims of violent crime. They genesaIay know less abulrt flow to stay healthy. Social service bm~aueraciescan be intimidating, waiting lists stalled and scfieduling inconwnicnt, if once tried to refer a patient to a free clinic in Baltimore, hut f was permitted to call the intake counselor wxnly bet~veerzseven and eight o'clock irz the morning on FVedapesdays.) IVErcn these forces influence health and access to care, it 113akcs sense to say that ""social class gets into the body>''in the words of Nancy Moss of the Pacific Institute for F4Tom-k Health." "IthlIPfi about my patients whose chilidrcn have ast'n~na.This lung conditirtll has been on the rise since the 1980s and now afk-lictsabout five million cli~ildren.Black children are F~IPII:to six times as likeiy to die from it as white children.6Wm leirnportant trigger for asthma, especially among inner-city kids, is the mundane cockmach," Tiny parts af the insects%ooilies are shed a d inhaled, causing allergic reactims that constrict small airway passages in the [ungs, My paiients (mainly single mothers) may keep a clean apartment, but there is little they can do about their neighbors' housekeeping habits. The city may e~lentuallyget arsuxzd to fumigatmlg, but the maches (and the rodents and the dust mites) come back because the neighbors don't change tli~eirhabits, Social class gat '"into the body" of the son sf one of my patients who was bumed oblt uf her apartrncnt house by a ncighbor who fcE asleep with a cigarette. She had no fire insurat~ce,and her only local relative, a sister, with whom she fleetingly considered staying, sometimes smoked crack and had an alcoholic boyfriend. 50 the mother and son spent weeks in a damp shelter until the asthmatic child developed pnetln~oniaand had to be hospitalized. Xxl I e s c situations 1 am more of a social worker than a

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physician as I try to he%ppeople navigate the District of Colurnbids inrpossibly byrantine social services mazs. Then, of course, the= are the obvious issues o f access to care, Lowwage wurkcrs and minorities are less Likely to have elr~ylayer-basedhealth insurance than arc better-paid emp1oyecs," Not having a regular source of care is a big obstacle to receiving tilnely care and maintailling a idmiliar relarionship with a doctor. Eve11 when they are enrolled in managed care, minorities are mare likely to pay the price when managed care plans ~"irecd out doctors with caseloads weighted with Medicaid-insured paticnts or sickr-and thus more costly-patients, P a t i e ~ sthemselves can be excluded from plans if their care is too expensive, and alder paticnts are yenalized when nursing bolnes limit the li~umbea: of Medicaict rccipiesats they accept or when home health wurI~(:ers refuse to lnak visits in dangerous neiglzborhoods."" Finally, simpfy having insurance can itself he a prtrxy for social and attitudinal factors that influence health. For example, a 1993 study of rhc~usiarirdsof New jersey women with invasive breast cancer farrnd that w m c n \rJhc) were not privately insured recekcd thc diagnosis iatcr and died sooner after diagnosis than those with prihrate insurance."' Obviorrtdy, private insurance means better access to care, but coxrage o f scrvices is not always enough. In fact, the Mew jersey women w h s c mammogram costs were covered by ptlbtic insurance did as poorly as a gall, e IfiThy? In large part hccarrse wTomenwho Iive those with no c t ~ ~ ~ e rat on the lower rungs of the socioeconoinic ladder are more likely to deny cancer sylnptoms, to distrust the medical systeln and to fail to perform self-examination, Some are not aware that public insurance wilb pay for screening services. These are all possible explanations for higher mortality among poor women.

Putting Correlation in Perspective Hruce G. Link of the Colu~nbiaUniversity School of Public Hcalth and Jo C. Pheilan, a sociologist:at UC1,A, urge us to view socieseccsnsmic status as a "fundamental cause" of disease. ""X we truly wish to reduce ii~equikllties in hcalth:"Ilacy advise in the Arrreriimtr klrrllnl c?('BublicHealfh, ""we muse

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addmss the social inequalities that so reliably pradrrce ttsc'n7,""7:"But just how reliably do social conditions actually cause disease? It is crucial to re&lizethat many ""dteamilzanfs" of disease are rcaHy currelates 06 disease, not necessarily direct causes of: it. Social inequalities are associated with the habits and Lirnited opp~rtunitkfithatoften read to poorer health, but they dta not literally produce the sedentary lifestyle, obesity and risky behavior that typically underlie many of the differences in health status between the less wealthy and the better-off. Anc~therpoint a f confusion is tkc assumptio~rthat what is true about a population's health is also necessarily trrae about an individual from that population--an un-fourtded conclusion that sociologists calf the ecological faLXaq* True, it may be a statistical fact that one out of every three young black inner-city men ends up involved with the criminal justice systeln by age twenty, but this need not be the future ior any particular young black man. Even a low level of education does not inevitably lead to poor prospects, A high school dropoub. need not succumb to his statistical fate; he lmn get a C;EISP, take college courses, postpone having children until married, exercise regularly, refrain from smoking and drilzkir~gand tkcrcby grt.at1.r).improve his financial and medical fortunes, There is no denying the pressures on him---one of the most runalignant, in my 7Jiew, is the pressure exerted by his own peers to fail in school-but the irrstitutions that will bolster h i n ~are r~eitherbuilt nor maintained by the public health profession. Itis civil society and its mcmbcrs---qualified teachers annafraid to discipline, attentive parents, intcrested raeighbors and. olhers-that are crucial to llais p u n g man. Because public health focuses on popuiations, not ctn individuais, its wsearch properly concerns the rcl&ionshi;p between particular variables (for exanlple, iyollution, incosne, diet) and the health status of groups, Even so, it is striking that indoctrinologists consistently horne in on aspects of these relationships titat fie a gartcular political orientation, For erraxrrple, noting that wealth and health correlate, sonle pubfic hetllfh experts condemn capitalism and decry efforts to roll back entitlement programs and racial preferences in college admissions. However, if they must be social activists, these experts could just as easily fight for school choice

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in inner cities with faifing public si-hoofs. AAer all, we know that cducation is finfced to both FUture earning and beat&, And wouldn't it make sense to encourage marriage and religious activity, since both an: associated with better healtha7' 11wokald, but- dorl't expect tu hear as much about these options from the practithners of PC: medicine---they simply do not fit their political agenda, M'e must also put into perspective the evidence for a relationship between emotional state and pkysiclilc~gy~ Numerous studies have documented an association bc.t~"\rcen emotional slate, especially anger and hostilit)r,and carcliovascuiar disease.'" In an exharrsdw book on the topic, ,4nger, Hostilitjj and the Heart, the psychologist Aron W. Siegman classifies s angc.r: withheld anger (also caled scpressed anger) and cxtwo ~ p c of pressed anger, Siegrr~andocuments scorizs of studies showing a relationship between both kinds of anger and increased blood pressure, stronger contracr-iEityof the heart (sometimes experienced as palpitations) and irreguiar heartliJec2tse~ S. Lsonar-d Syme of Rekefey" SSehool of PubXic fiealth was one of tk@first to describe the ""cotrot of destiny'9hcory when he examincd the landmark kvhitel-rall studies perforxned by rcsc.arcbcrs at University College in London." The studies examined workers in the five grades of the British ChiX Service, all of whom had access to nationaSizccli EmeczIth care, F a i l e it did not surprise researchers that the civil servants in the lowest grade suffered heart disease at about three til~lesthe rate of administrators in the highest, or fifth, strattnll, they were puzzled to find that even highly paid professionals in the fourth grade suffered twice as much cardiovascutar disease as top-ranking administratars.7"%7hat appeared to =plain this finding was the fact t h a ~these professionals haci Bittlc ""control: of desti11y"-their jabs were fraught with respoa~sibilivbut they could exerarise little. authority, Another term for this phenomenon, discovered independently by the psycht~logisaMartin l?. SeIigrnan in his work with animals, is ""learned helplessness": a posture of defeat and resignation (often accolnpallied by physical symptoms) that follotvs repeated Oiled attempts by the animal to change its environment. Eventually the animal "learns" to adopt a help-

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Icss, passive stance becalxse there is little it can do to idrrence events. Ikeopie, too, can become passive when they &cl tanable to control their Iives. Nat all people retreat into passivity, of course, b-rrr for those 011 the threshold of resigrzation, the indoctrinoilogists' nlessage of hoyelessr~essin the face of prevailing social conditions is probably the last thing they need to hear, Such defeatism can only encourage the d e v e t o p ~ ~of e ~learned ~t hel ylessness and a feeling of lack of "control of destiny." After all, imagine being told that your health is determined by your place on the socioeccrnonlic ladder (which tl-icst. commentators erroirrorisly assume to hc pertniment), If you are mired at the bottom, why bother to take care of yoursclg Social pri,ductisn rescarcbcrs rcact predictably one-sided inte~uceations into neutral datia, FVe see this in the use to ~rhichevidexlce w f the relationships b e ~ e e nhealtl-r and sociocconorrnic gradients has been put: as unc-sided cautionary tales about the perils of hierarcb. As John W. Lynch and George A. Kaplan crf the Irniversity of Michigan speculate, "flealth may be affected through indikridual appraisals of relative position in social order. . . . Even those with good incomes rnight feel 'relatively deprived' camparecl to the super rich:"'" Kichard FVilkia~sonis more empklatic: "The social consequences of gespllck differing circumstances in k r m s of stress, self-esteem and social relations, m y he one of: the most important influences on heilltfiP77 'This assun-rytiwn leads l;t.Tilkirrsonand others to conclude that a less economically and socially stratified society is a healthierp and hence prnfcrable, society But wait a. mctxnent, If this so-called xtative position theory is true, aren't there alternative lessons to be gleaned? Far example, couldn't we just as easily think of the lbrhitehalE stu* of cardiovascular disease as an object lesson in the isnportancc o f free eilterprise, accountability and opportunities to be creatiliie on the jab? i%rorkerswho arc responsihfc for ccrtain tasks tvould have tiitc latitude to fulEU ckcm, thus minimizing the stress that coxrles horn being stymied when urle wants 10 do a goad ,iob, kVith accountability they could take more pride in what they haw accomplished and e ~ q u yenhanced seff-esteem. b$%y overthrow the meritocracy as Zierler suggests, when reinforcing it-so that peol~lecould get results

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based a n their performance-might be a famidable antidote to learned tzelplessness? The answer by 13ow should be clear: the only acceptable rcmedics in PC medicine arc social actions that -cvould cfisrlrpt our prevailing ecoaornic and social systems. In the end, whatever larger social meanil~gwe ascribe to "control of destiny;'" the consensus among responsible scientists is that chronic-, lowgrade stress is not good for one's health. The precise mechanisn, by which ""cotrsl of destiny" aress might translate into physical darnage such as sus~ainedhypcrknsian, heart attack or heart failure is not known, but intriguing data and plausible theories abound," PI"crhaps there is trauma to the inside of blood vessels frorun repeated frustration-indw ced surges in blood pressure, Or perhaps s t ~ s disrupts s the normal cardiac rhythm, pmduces a blood vessel spasrn or even leads to making, which in turn has its own cffects on blood pressure.79I lormonal, neural and immunologic chal~gesare also probably involved in regulating the cardiovascular system. Although I could find no research on emotional states related to ""racism'"per se, who could doubt that ycoylc who have been disc-riminated against kcl anger (withheld ar expressed)? This couid conceivably contribute to high blood pressure and other cardiuvascular i.rrublems, X t is important to remember, however, that the body callnot ""16.111"' ivher-c tbc anger is coming kom, Thus, ironicafly, the anger and stress cngendered by being it victim of bias are no different, physiologically speaking, from the anger and stress experienced by the victilnizrr himself. After all, the classic racist is a scetl~iargindividual who stews in his hatred until he erupts-that is, he withholds and then expresses rage, This ivould seem to describe the prototypical ""angry white malen-the man who feels that minorities and women are gettiag ahead at his expense. Is he not a perfect What" s o r e , this dynamic is by no candidate fclr ""lw control of desti~~y"'! lraeans limited to black-white interactions. W ~ aabciut t thc kcnsicllxl and. resentment between lighter- and darker-skinned individuals within a minority group?""" Gra~lted,it n~lakesa 1non.c coanpcU-ing,and certainly politically cmrect, story to link the stress in lninorities (and subsequent illness) to being a victim of white antipathy, but an evenhanded approach to research on

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stress and disease canntrt be guided by a script, To be store, researchers should nurture their hunches about the way the world works (it's hard to imagine they could ;i%aistit), but their job is t s ksb these hunches, or 11ypotheses, by interpreting the data from all angles, not just the olles that mesh with their political philosophy.

Mexican American W O ~ ~G PI ZI the I~ Healthy Baby "Paradox" Many Mexican Anlericrans are found in the lower reaches of the incsrne and education scales, but Mexican American infdnts arc significantly healthier that1 infants from other Low-income groups. The Mexican Amerit-ail ix~fant:mortality rate (dc6ned as death before one year of age) was the same as for white bcrbics-almost six deaths per thousaltd live births-in 1947, according to the Natisnaf Center for Health Statistics. For Nati~reAmericans the rate was dighrliy under nine deaths pcr thousand live birtl-rs, and for black babies i~l~nost f~urteen~gi Health i~rsadranceplayed Xi"i1e role in these differences, since Mexican h c r i c a n wamcn were less likely than other groups to have public or private i~~surance. Sixty-two percent of them were insurecl, whilc 85 percellt of white women and 76 percent of both African American and Puerto Rican women %vereinsured, Xn fact, Mexican An~ericiznb.~4b"tes were no re than twice as likely to be born outside of a hospital compared to babies of all other graups,gWn~sngbfcxican Americans themselves, we find a difference between tlac children of recent Mexican immigrants and those of acculturated Mexican Americans. Tiaough the immigrants are poorer and have less education and only tenuous; access to health care, their babies weigh rnore at birth and have a greater chance of surviving their first year than those s f U,S,-bor1-r mothers of hfexican descent-babies who, in turn, still have lower rates of infant ~nortalitythan many other groups in this country, The health of Mcxicar~Amrrkan i n h ~ scspesially , the babies of recent immigrants, was so rrwrexpccted by researchers chat they iabeled it the ""epidemialugicai; paradox."'"' 1%seems e s s pkzradoxical, hawever,

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when W sec that the imlnigrant women have headthictr diets and are far less likely to use drugs in pregnancy than their acculturated counterparts."qfavier I. Escabar, a p s ~ h i a t r i s at t the Robert NToocl Johnson Medical School, believes these differe~~ces reflect an ""accult~ration'~ effect ar-rd the emsion of Mexican tradition. "I stmngly suspect that the real reason for the advantages that Mexican immigrants have may be. . a protective or buffering effect of traditional culture:' he writes.P' According to David E, Hays-Bautista, a professor of mcdicinc at UCZLA, tatinas in Los Artgeles "have one of thc longest life expectancies and lowest disease burthe d e ~ ial ~ sspite o f their lack o f heaitkl iizsul-ance,"'""raditionalllr, ctoso-knit, extended fa~x~ily networlcs of %-Iispanicsoffer a great deal of support, These boncis b ~ a ctown k sonlethihat once immigrant families are e v o s e d to and absorbed into America11 cuftrrrc., Escobar says t l ~ a t lifestyle is also affcckd-diet becot^ff~es less healthy; fclr instance, Vet solne of the beneficial effects of the Mexican heritage lingcl: 'Thus, Mexican American babies are better off than those of other groups, but worse off than babies of raew irn~nigrarats, It must hc noted, howcvcr, that familial support, good nutrition and self-care are nor always enough to ensure healthy babies, Epidemiologists and pediatricia~~s remain puzzled about the extremely high rate of infant mortality in Acrican Rmraican babies: bet\vcen thirteen and fourteen per thousand live births among African Americans, compared with six to sever1 per thousand live births in all other groups, The twoto-one mortality pattern persists into the highest reaches of the sociseconomic scale. The Centers for Disease Control and other agencies and research institutions arc investigating why the leading causes of infant death, such as birth defects, problerns associated with low birthweight and sudden infdnt deah syndrome (SIDS), are more cunlmon arnong black babies. lames !V. Cullins Jr., a ncsnatolc~gistat Norehwestern University School of Medicine, suggests racism as an underlying cause. "Even if a middle income couple ends up in a carnhrtabiie rxlorne in an rconomically stable neighbarhood that is not adjacent to a toxic landfill, is the psychosocial cost they pay to overcome racial barriers not of some im-

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portancel Indeed, could not this sort of experience have direct adverse health effects?" ask Collius and his colleague R. J. Davis in the article ""Bad Outcsmes in Black Babies: Race or Racism;?"'"' According to Cotlins and others, the chronic stress incfuced by racism could elevale hormones that set off pre~naturclabor or hwer resistance to vaginal infections, also known to be more prevalent asr-rong African American n30therse88 The theory that disproportionate rates of infant morta1i"Fy in black babies arc attribrrtallle to racism-induced strcss cxperienccd by thc mother has as little empirical foundation as Krieger and Sidneyk blood pressure-race discriminltrjion theory Nonctheicss, to the extent that some women, for whatever reason, are at risk far sustained levels of stress during pegnancy, the physiologically buffering effects of good self-care, prenatal checkups, adequate nutrition and abstinence from nicotine, alcohol and drugs become even more important.

Choices and the Health Care System Even when yrevclltivc hedtP1 sewices are available, pour and minority ixldit-idtsals tend to make less use of them, For example, when the Breast Exarnination Center of Ftarlern began offering free rnatrlrnograms in 1994, "its doctors were disxx-rayedto discosjer that the .c5romex1of .-iarXetn were not banging down their dosrs,'"eported the New Yo& TiwzeS.qY'rhe expcricnce of Haricm's center is sadly familiar. Ibor and aninoriv women often dccline o f k r s of a free matnmogram."' One study found that most of the women who had not obtained one didn't think it ivas necessary-i~ rcasor?i more comrnonly given than Lack of health insurance or ability to pay,gi According to a 19% study reported in Carecc-, bfack women arc more lilic%y to go to thc doctor for trc'atment uf something that is bothering rhem than far preventive care like ~creening~92 Follow-up rates rnv differ as well, A number of studies found that white womcn returned to the doctor for follow-up treatment when a breast cancer abnormality was diagnosed at significantly higher rates than black and Hispanic ~ o r n e n . ~Wth 2 respect to screening for cervical cancer, anahcr study found that, among women with abnormal Pap smears,

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30 to 50 percent: never returned to the doctox; and poor and mirlority

Rromen were ~verrcpre~entcd among the no-shows."" This i s cspeciaUy tragic because screenkg far cervical cancer works, The diagnosis of a pre- or early canceruus state is relative111easy to nmake, and treatment for early stages of cancer is very effective: 95 percent of wca~~cr-r ~vitbearly cervical canzcer are alive five years after diagnosis and treatment. "Part of this has to do with attitude:' explains Roshan Bastani, the lead researcher on a bj'(_',LAAbreast cancer study, Bastani fc~undthat nearly all white women diagnosed with a breast abnormality followed up, but only 75 percent of black and Hispanic women did, some of them thinking, Rastani says, that "it will go awdye3'95 Social networks are important too, According to a study by researchers a l -the tinkerslty of California al: Berkele~black worner1 were rnore likely to undergo a routine mammogram (even after controlling for age, health and insurance status) if they bad strclmg tics to fi~milyaaci community." 'rt-~eresearchers concluded that social connections -were inlporrant in encouragir^rgwomen not or~lyto seek an initial test but to fallow up thc rcsuits. No doulrt tbcse findings exknd to wonlen of all races. Some patients put off ftocfors' aplpointnlents because they believe their kieatllr is in God's bands. Such fdtalism may be especially common among FTisyanic pdienrs, explains Clay E, Simpson Jr. of the HIIS Office of Minority FIealth," Natiw Americans, some u n a c c u f t u r a immigrant groups and populations in the Appalachians may cleave to folk wisdom about health (especially in communities with stmng traditions based on such wisdom) and feel intimidated by the health system. Too many men, especially Akicara Americans, avoid being checked for prostate and colon cancer because of their aversion to the rectal exam and colonuscopy, rcspecti\?ek 7'he side effects of cancer treatnleats keep some people from screening (in particular, the high risk of impotence, so~netimcsirreucrsible, that accompanies che~notl~erapy, racfiation and surgery for prostate cancer), as do pessimism about surviving cancrr and a general lack of information about symptoms, diagnosis and treatmentev8 These factors may explain why black me11 are more likely to came to their doctors with an advanced stage of prostate cancer even \*.hen there is access to

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Less-educated men and women, whatever their race, may be rclativcly uniniormed about the importance of screening or uneasy with technology, For example, wolnen with under twelve years of education were less likely to have been screened Por cervical cancer-wr to have e\iera heard of Pap smears-and to have obtained mammograms."'" In a sample of minority wornell in Settlctlc, those who did not get mammugrams rcgularly told researchers that, among other things, they worried that gfc.ssrrre from the machine would cause breast canccc~~" Says Lsrna G , Ganlas, a Ilursc with an East Ilarlern clinic that cares for a Lain0 population, ""Most clicr~tsI encounter nted to be persuaded of: tkte validity and utility of modem medical pr~ictices."l~* The phenomenon is not limited to cancea: In lMassachusctts and obhcr states, expansion of state-funded prenaeal care services did not result in the anticipated increase in use of care or improvement in birth; o u t c o n ~ e s ~ ~ ~ Elsewhere, free or low-cost prclnalat circ was r~nclerused.~ Thc yrobrdem o f law regional vaccination rates was discovered to be the result of inothers not bringkg their c h i l d ~ nin for scheduted shuts ratl~crthan a lack 01: free vaccination sen;ici.s,l'"V~nner-cityblack patients with HIVII~LDS,according to the New York City Tkatment Access Data N e ~ o r k dedined , free or lowcost drug therapy; other analyses of patients reporting nonreceipt of drug therapy sho\ved that patienfs WCR in fact offered the n ~ c d i c a t i c ~ ~ ~ s . ~ ~ ~ ~

Making a Difference at the Front Lines Rut the= is much that ran be done in the areas I've just described, and frontline pubtic health professionals arc ctoing it. ~acrassthe cvulltry thousands of partnerships between cvmmunities (especially churches) and nox~profit health fouxldations and acdemic medical ceaPters are under way. Solne very practical solutions have emerged--for example, sending personalized reminders for screening in the mail or by phone; televising ads with toll-free numbers for making appointments; and deploying mammogrxphy \rans, In 1999 the Boston Public EIcalth Commission launched an q g r c l s sive tfaree-poi~ailticmcer campaign. First, every Boston household received information on cancer prevention. Scectnd, free and low-cost

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screening was made available, and munkipal emplojfees were allowed to take fc~ur(paid) bsurs off each year for screening. And third, all Bostc3nians with cancer were provided with transportation to and from chexnotherapy, radiation treatments ancl Auceor visits,"'"' Far the poor, rural population of Birmingham, the University of Alabama helped create a cookbook of heart-healthy meals for church dinners and developed a food stamp prograrn for i~urchasingfresh produce at local farmers' markets.108 W t h less than half of Korean wolnen over fifty being checked for cancer in the past year, the University of Caiifor12ia at Berkeley distributed Korean-la~~guage educational materials a bout brc=ast aad cervical cancer and held worlcshops in &rean churches, Improving hcajth Iikracy has taken on urgency as well, The American Medical Foundation, the phili~~ithruy ic arm of the America11AMedicihf; Association, began efforts to help patients use the drugs they arc prescribed after a large study of functional literacy in thc United Stdtes found that one-thid of English-speaking patients could not read or understand directions on p ~ s c r i p d o nbottles, agyuintmeut dips and other printed information.~~)9 With managed care cutting into doctors' incomes and piling on paperwork, the impulse to provide clilitri~care has diminished considerably over the fast decade, From 1993 to 1998 the Robert Wc~odJohnsebn Foundation funded Operation Reach Out, which took care of the burdensome paperwork and handled tbe bureaucracies so that doctors could provide free care with 1nil1in2al hassle, One could easily devote a separate valumc tca the countlrss eduiational and health care outreach efforts under way, including public-private partnerships between Ihospitais and commlmities, But in the end tkcsc services arc cmpcnsatory part of thc health care safety net. One probkm is that even the best screening ser~ricesdon" help the working poor when a test comes back positive for cancer-they cannot afford the next step: cancer treatment. Dr. Ann S, OMMalley of the Gcorgctokvn University Health Cerlter confronts this ro~~til~ely, Her patiexlts are in the no-win position of having their callcers dctcctcd through public screening progralns yet depencting for treatmel~ton the chance availability of increasingly scarce charity care from physicians and hospitals. 'To

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ar@medythis far women, Congress passed legislation to cover breast and cervical cancer treatar~entbenefits in 2000. Admittedly, this is not f ~ i to r ul~instrredmen who are diagnosed with postate or colon cancer. "Picking one group over another in addressing problems posed by lack of insurance is a practice that is far from idcar' says O'fcrlalley. ! ""~licleccl, wiil we need more piecemeal legislation to ensure cancer treatment for the uninsured? Must we depend on a safety net tu catch them and all the others who still fall through the gaps in our private and public insurance systrtlns? Do we need universal bcalth care? These questims won? be ~ s a l v c danytizl~esoon, but at kast they franrt. an, appropriate problem-unc tbrith pafpabie consequelaces far the fieaftin of Americans-far public heal& experts to tac'klr,

A Profession Losing I t s Moorirzgs? If the "reallocation of society's resources' and the quest t'or social justice seem remote from practical puMic health, poliq statements issued by the American Public Health Association show just how far b e p n d the bounds of clinical rclcvancc the profession has drifted. The association has 0%cially opposed aid to the contras in Nicaragua and war in the &fiddle East, and it has issued a policy statement for a "nuclear-weapon-free world:'l l On the domestic front, the association has called for congressional campaign finance reform, tried to stymie wclhre reform and rejectcd a proposal for increased state control owr Medicaid.""" Fernando M, Revifio, a farmer association president and dean of the public heaftt-t sckool at the University of North Texas, assures me that a preoccupa.tion wieh politics does not reflect the ""silent majority o f the APHA." Nevertheless, hc cautions, ""unless the API.1A leadership is politically and phi8osopl1ically in coilcert with the rank and tile, the association runs the risk of becornin(: irrelevant."i l3 That would be a sharne, since the rank-and-file members are data-dri~~en professionaIs who practice traditional public health, like tracking infectious discascs and cancer, protecting us ham drug-resistant tuberculosis and bacterial outbreaks afier natural disasters and educating communities about ways to reduce the

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risk of illness, 1biFaen E-XIVIAILIS first appeared in the early 1980s, it was thcsc professionals wl-scl urged adoption of standad pubtic health procedures wlitilc the association as a bo+ rcrnained silent. The association, like the CDC, the Insiitute of Medicine, the m i t e House AIDS Offlice and most gay acivocacy groups, struggled tvith the q~restionof whether concerll about the civil rights o f gay men should outweigh the opportrlnity to curtail HIVlA1DS through routine public health maneuvcrs, The principles at st&e were hy no means trx'v'ial,involving potential discrilninatiol~against homosexuals, and especially infected homosexuals, if confidentiality were not tightly preserved, But as Randy St-ailtsstated in h i s book And the BnnrZ Played On: "CPesgledied while put>lic health autl-roritics . . . refused to rake the tough measures needed to curb tlze epidenrzick sspread,""i"4s the journalist Chmdler Burr noted in his 1997 article "The AIDS Exception:' Inany doctors and public health officials were sympathetic to the gay community's repudiation of the use of tracking and notification practiceseH5 Today there is virtual consensus amang public I-realth professiurtals that wc could ha= liimitcd the AIDS cyidcmic had some or all of thc fullowing steps been taken: (1) routine testialg for infection, (E) reporting of positive individuals to the local Eaealth dcpartmrnt, (3) cctabct tracing to identifi others who may b w e been exposed (key for babies born to infected molhers since medication can significantly cut the risk of AIDS developing in newbarns), and (4) notification of tbosc people. These '10~s practices arc roucrsely emyloycd for outbreaks o f scores of contab* diseases like tnberclalosis, tygl-laid and syphilis-few o f which, unlike If fViAf DS, are virttralky always lethal, Yet as o f the sprillg of 2000 the APHA has been silent on testing newborns for HIV and opposcs mandatory testing of pregnaltt worneneH6 Katherine Marconi, a melnber of the API-!A and director sf s c i e ~ ~ c e and epidemiology at the Healtl-r Serrviccs Resources Administration, cxpresset2 her irustration about the assacnation's pursuit of a larger social agenda. Writing in the association's monthly newspaper, The Notiolti Health, she asks: ""lthere rooall lcA in the APHA for health brorkers who def?rre themselves as conservati\icl or centrist, agree with tianitations on

41

abortloll or support statesyrights? . . . hfernluers colne from the whole spcctrum of political perspectives. . . . If the 'An3ericanYin APHA is fargotten, and the hssrsciationk svision cel-rters on politics and not pu"rsic Izealtl-n,there will be lirxited rc401.rr in APE3A for i f s ~neznbers."~ i7 The pursuit of social justice is loosening the public health profcssio~~ from its scientific and clinical moorings, Certainly, as citizens, public health professionals are free to be active in any i~oliticalsphere they like, but they must keep their politics from inBuencil^rgtheir classroom, their interpretation of research ancl. their health prescriptions. Professionals betray the public" trust when they use their status, as health experts to continue thc work they bcgan as political activists in the 1960s. Soznctimes it is difficult to know where the bousldaries arc, I mysdlf nlay have crossed the line between clinical care and ""rehrr-rr." h the 1994-95 palicy debate over ~vhetkxeraddiction to drugs and aLcahol shotlZd be considered a disability by the Social Security Administration, Collgress specifically asked whether the individuals concerned should receive income maintenance in the form of cash in the s a m way that other disabled bcncfreiarics do..At a ct-sngrcssional hearing 1 ar.iswert.d no. I had spe"t years watching cash benefits clnder~ncrinethe ~ w r kof hcaith professionals, Mcrrt. important, since my patiena o fm spent part tar all of their monthly check on cocaine, the cash b e n c f i ~undermined their expressed desire to quit drugs. A s o h t i m ? X suggested that drt~gtrcatmcnt compliance be a condition of xseiving benefits; that only ill-kind, not cash, bene&ts be distributed, and that titrle limits be placed on eligibility for "addiction disability" benefits, Tn other words, the program should he run like a treatment scholarship, Not c ~ r y o n cagreed wieh my proposal, of course, but it had the a d v a n t a ~of being dinically Inhrmecf: it was prompted by: rny- experience in the;:fidd, and the experiences of others like me, and it was specific. Unlike the indoctrkologisas, 1 was not o t ~to t trar7tshrm the nafion3s economic and political systenls in the rrame o f health; I wanted .to push the day-to-day bchavior of drug addicts toward the achievable: measurable scpbriciy and personal prodrrcti\t.ity. This Is not to deny the existence of social problenas in our nation, nor to say that certain social changes couldn't improve the Illrman cundi-

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tion (heallh Included) in the fong run, There is no reason, furthermorcl why caref~ilresearch OBI the relationship betwcen social variables and health should not proceed and quality results be published for the cnlightenmerrt of professio~zalsand the lay public alike, Buf the more yassionately public health experts pursue social justice, the less effort, time and money tl-rey can devote to promoting t-realth for Americans today With more than half of all deaths resulting from diseases that are prrventable or n~odifia"rPe,it is indeed recMess to d o ~ ~ n p l athe y virtues of self-care, Wbrse, ptttting social justice at the core of the pttblic heaith enterprise undermines individual accountability, k o p l e who practice unsafe sex, stick dirty necdlcs in thcir veins or fail to take their %B r~edizaticsns daily are two often seen as passive vi~tlmso f malign social forces, One is accused of "blaming the victim" ior expecting them to make safer choices, an exycctdeion that takes on added urgency when third parties are endangered by their behavior. On the colzfrary, %to accept reckIessnes6-or worse, to expect it-is a g ~ a disservice t to vulnerable people, blinding them to the power thcy do kalrc to enhance thcir own welt-king. Do 1 think that public leaders and politicians are going to atternpt lnassive social refor~ns(for example, by "closing the power gap:' "counteracting the free narke et with social programs" and so on) based on Ihc urging of an activist cohort of public health prokssors? Of co~irsenot. Yet "ihe essence of thc indoctrinologists' claim--that being a victiln of social forces can make YOU sick---is not to be dislnissed, Victim politics is indeed finding expression in a number of real-world clinical dornains. Irt the subseyuent zl~aptersX use specific exaanyles to show how identity politics has takca greccdrnce over clinical imperalives. I describe how clinical kacli~ingis being potiticizsd, how the importance of personal responsibility for one" health is being undermined and how differences in health outcomes between groups arc uncriticatty accepted as evidence of bias in the health care systelrz. People are often surprised to hear tllar y sliticaf correctness is spreading into the clinical arena, But as we will see, not even nledicinc is i e ~ ~ n ~ u n e ,

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Inmates Take Over the Asy

OCTOBER 5, 1998, hrty-six-year-old Margaret Ray set her backpack and pursc down by the railroad tracks in a sxnall Colorado town. Then she knelt in front of an onrushing coal train arad was instantly killed, Ray who suffered h l n schizophrel.lia, had become kfarnuus for s~alkingDi~vidLetterman, the television personality; she harbored the dclusitln that she was having a love affair with him. She had once left co&ies and an empty whisk\/ bottle in the foyer of the Letterman h o n ~ ein New Canaan, Connecticut. Ray's history of mental illness had been long and troubled. Sincc her t~rexieies,she had beerr in and out of psychiatric hospitals and jails, On antipsyclzntic mcdication she did weil, but eventtlally she stopped taking the medicine and quicHy detcrioratecl, 'rwo months k f a r e hcr suicide she was arrested for the last time, At the hearing at which she was freed, the ~Vewbrk- Erne reported, "A judge opellfy lamented thc absenccl of any lcgal mechanism to make surf she receivect lnedical hely."2 In fact, such a mechanisnr dues exist.. Xn a f0rt.n o f involuntary treatlnent called outpatient commitment, a court may order a regime of thcrapy and medication, and the patient xnay bc rehosyitatixd if she fdils to comply Because of acivism by a small but vocal group of Ear-nzer psychiatric patients, however, supported by civil liberties !avers, thousands of people like Ray are not rccciving the tre?aimeflt&C.); need to gct we11 or at least to be safe. These aclivistli call tlhenlseZves "cor~su~ner-.survivorss (idsol "pychiatric surviv~rs").The terrn ""consu~ner"¬es a user of mental u

MIDDAY OK

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heafth services, and ""survivor" refers ta one who has e n d u ~ dpsychiatric care. '3urvivorn k isof used in this term in the same sense as ""cnceer survivor>"" someone who has had cancer and survived it, sajrs the psychiatrist and researcher E. Fuller Torrey. "Rather:' he poirlts out, "it is beirlg used like 'Holocaust survivor,' an individual who has been unjustly imprisoned and even tortured,"' Some ~ o n ~ t l m e r - ~ u rhave v i v ~requested ~~ that thc mental health profession "make an apology to consumers for past abuses of potver;'q As vtre will see, radical consumer-survivors arc the ones wha Inore properly owe apologies to patients for standing in the way of cons ~ u c t i v etreatments and policies* Csnsrrmer-srrrvivctfs claim that psychiatrists make therm sick, As Coni Kalinowski, a psychiatrist Itersell; and the consumer-s-carvivorDarby IJenapey pur it, '"X-patients came to learn that their feelkgs of isolation, inadequacy>and powerlessness were the result of real practices within the mental health system . . . not . . . products of their illnesses,""?'hey point to the dei31orable history of the rnental heaith systeln earlier in the tbrentieth cilnturp when ncgtigencc and ewn brutalit)[ were common in state p~chirrtrichospitals, but ignow the reforms that have largely ekirninatcd such abuses, The National Association of Coursux~~er-Survivor bfea~taf. Health Administrators-a subcommittee of a group called MadNation-wants ""an uvcrsight board including consumers and survivors to inspect treatment facilities and rrzechanisms for grievances" and laws "to Limit the powers of psychiatry by rnaking consumers full partners in diagnosing and treatment,""" Jackie Parrish, a Inurse who formerly served as director of sommunity support programs at the federal Caenter for hjfentai Health Serviws (Q_:i""sXHS), secs this type of partnership as merely a transitior~alphase, Consumer-sur%rivori~~voivement in det~eloyiqstate mentat. health plans is good, Parrish believes, but it "is only an interim step to being totally she says, the patients should become ""ee consumer driven,"W~plintally~ nlanagers, and admirrislratsrs-that is wi~iltwill bring reat change+"T f"arris11 exlvisinns peer-run serviu-.~, Based 011 ~iationskipso f eqtraliv betwec.11 peers, these services are a pustmocfern altematke to the traditional psychiatrist-patient relationship, which consumer-survivors condemn for perpetuating a " p r ~ t dif%"erc.ntialm r i b c ~ e e nthe heaithy, dominant doctor

inmates Take Over t h e As~)lurra

and the iU, dependent patient,W%\iladNationvsnsarcd art online ~ f e r e n dum asking respondents to vote yes or no on the question: "Is the demonizatiorz af people diagnosed with mea~talillness a hate crime?'" Cecilia Vergaretti of the Mental Health Association of Oregon extends the battie against "power differentials" beyond the lnental health system, which, to her, is mereZy a microzvs~rmof the larger universe uf societal injustice, "This is not about reforming an ailing [mental] health cart system:' she says, sounding like a prc3fessicrnal ixadoctrixaolagist. ""X's about =forming soci-

CV:''"

Do 1 deny that some ~nentatlyiki people have been treated insensifvely, even rnatt~ated,by psychiatrists and hc)spitats? Not fa~ra runhutc, In fact, I would readily join with consumer-survivci"rsif they workcct toward weecling out incompetent cliniciarts or prontotirrg naore vocational rehabilitation, supported housing and so on* But whatever real or percei\icd ir~jmsticcsh a w embittered the~n,we c'annoa: afford to comprc4mise the prospects of severely illentally ill people like Margaret Mary Ray by allowing consuxncr-survivors to be in charge of others?reatment,

Their Crusade, Your Tax D~flcars Unfortunately, the federal government and state mental health agencies across the cotlrltry arc givitlg mural and financial support to the consumersurvisior movement, Or-reof the biggest huustcrs is Bernard ~irans,director o f CMHS, Lll~dethim, CMI-XS funds the Mational Empowermealt Center, an advocacy organizatioll that is flatly agaix~sttreatment by psychiatrists. ""Our prin~arypl~ysicial>smust be asurselves:britcs Scott: Snedecor;, pmgram manager a f a consurner-operated drog-in center in hrtland, Oregon. In his cenkr's ncwsIetter, Sncdcccar claims that "medication can bc worse than psychosis,"" P a t Deegan, a consumer activist and S~ledecor's colleague a t the Portland center, is interested in "rehabilitating mental health workersf9She produnld a project called "Virit Breaking: 1-IOWthe Helping Professions Hurt."'2 Paolo Del Vccchio, a CMHS consumcr affairs specialist, explained to me why he and his colteag~~es oppose invofutatary treatment: it re~t-akdsyatienls of "their own pers~nalEiolocaust and leaves then1 kelitlg hopeless, believing they will nwer rccoc?cl:"i3

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Not all people who refer to tliaernselves as "'canst~txer-sur\rivors"are hostile to psychiatry. E k e Ken Steele, a fifty-two-year-old New Ybrk City man with schtzopbr-cniawho was profiled in a front-page story in the rJklw li-trk Tisnes and wllo is writing a book about his life. Steele has no interest in undermining professional care, but he does want to see collsumers more actively involved in the system. (Stcele himself serves on the boards of several mental health professional organizations.) He sees a psychiatrist and takes an andpsychotic rnedicatioax called risperidone, Wllten he bcgm the medication in 1995, onc year after it came on the narke et, the unsccn voices that he had head since age fourteen L-inally ceased, Stecle geiblishes .lVew R r k C i v K2ices, a newspaper a b u t mental health issucs, altd he counsels and busts groups for people with schizophrenia to help keep them from lapsing inte social isslation, As a self-identified constt~xcr-survivor,Ken. Steele is an asset, not a danger, He is nut part of the radical clement that denies the reality of mental illness, rejects medication and won't acknowledge the need to step in when individuals are deranged beyond reason. Ken Srcefe does not want to t a k over the system. But the radical consumer-suri~ivc~rs> &spite daeir f r i ~ ~ grh@foric e and niodest head count (they probably total only a few hundred), have infiltrated the mental healLh system in wdys that are truly clest ructive, The Natianal Merztal Health Consetnters' Self-Help Clearinghause promotes the fi70rk of the radical consumer-survivom It is funded largely by the feclcral Center for*Mental Health Services. In the sklrnmcr of 1999 the clearinghouse organized the National Summit of Mental flealth Consumers and Survivors irt Portland, Orcgc~x-(, Among the major topics were "seclusion and restraint" (the hospital practice of puttillg violent or outof-controi patients in iscked rooms or securing them in bed ctntiX they are safe) and outpatient commitnient, Both practices were deervned intslerablc by the summit Ieadcrship,"i" Consumer-survivors have been spreading the word to other countries as well. In September 1999 a group of fifteen flew to Santiago, Chile, to artend the biannual meeting of the !4Torlct Federation far Mental Wealth (an otherwise mainstream conference), courtesy of travel scholarships

inmates Take Over t h e As~)lurra

funded by GMMS, ihs~n~png the scholarship recipients was DaviJ Oaks, director of the National Support Coalition International, based in Eugene, Oregon. Oaks, a Flarvard graduate who suffered a psycl~oaicepisode as a prrrtg man, i s staunchly opposed to psychiatry. tie talks about I3ming been a "guinea pig" for doctors prescribing psychiatric drugs ("a hundred times worse than a bad acid trip") and vows to Lead a "guinea pigs' rebelXionl'Waks insists that mentally ill people can recowr through diet, exercise, tncditaticrn, writirlg and yccr support.'" &dos1dramatically hc claims to have organized what coalition members call an ""undergraund railroad'" to help par;ients cross state lines in order tct ""escape f'r~rcedoutl3atient psychiatric drugging?" A month before the Santiago conference, he helped kill several invohlntary treatment bills urzder consideration by the Oregon Iegiskaturc.17 CMHS also publishes the d'onsunler 1"cfl~il-sBrr2le~in,in which the mental health system (the very $).stern that the center's block grants susrain) is portrayed as heartless and repressive. Here is an excerpt fmm an item by a consumer-survivor who calls herself Niyah: I ~ ~ c ~like u l to d sharc with you what life has been like for myself, my children, and zrry gra~zdchildrenas a cor~surner-sttrvivc>r/~~atier~t~ H~PM race, ~ sex, and dlsabiiity have hurt us, . . . 1 believe rl~aeracism, stigma, mentalism, povtrrvy,victimization, horx~clessness,anc4 in~titutioa~zlizatitj~~ have contributed to a continued intergenerational cycle of needs and dependency, I am a woman who hbiis st~rvivedevery form of violence knokvn to man, sexual incest . . . ritual abuse, neglect arid system abuse, I've also survisred what many of us call re-traurnatizatiop~.This happel~sw11er.t you try to get help and the doctr~rshurt yorz again, I've been anisdiagnosed, beaten, bd t tereci, raped repeatedly; held hc~stage,

'IBx trluncy was afss spcmt to get the car~srrsumer-srrm.ivarmessage to

Congress and the president via the National Disabdiv C O L L ~anCinde~~, pendent federal agency with fifteen presidentially agpointed and Senatecol~firmiedwnembcrs, The countsilk rn3c;ol~mcaadati.o11sfor mental health services, released in early 2000, had the fiageryrlr~tsof the radical

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cansurmr-survivors all wer them, This was not starprisinlg sincc the public hearing at which thc council listened to trstilnony was held on-site at the 1998 anl~ualmeeting ofthe National Association of Rights, Protection and PZsBvocacy, a vigorously antipsychiatry organization, The titk of the council report ernbodies the ethos of the consumersurvivor movement: "From Privileges to Rights: People Labeled with PsyI.abeled! In other council chiatric ilisitbilities Speak for The~nselves."~~ documents there is no 1-c.fel.enccto people iabetcd with gh)?sical dkipbilities. That is because physical disabilities can be seen; it 3s hard, after all, for any observer to dispute the reality of a wheelchair= But psychiatric diagnoses, c ~ n s ~ m e r - s ~ r v i vargtle, o r s do not exist as fixed and defined cntitics, 'They are socialy constructed and exist merely in the eyes o f the beholders-namely, psychiatrists and other members of the dominant culture, In a letter to Presidcfae Clinton, the cauncil tricd to portray inwltxntary treatment as a violation of the Americans with Disabilities Act. "All policies that restrict the rights of people wi& psychiatric disabilities simply because of their disabilitics are inharmnicrus with basic principles csf law and justicel as we11 as willz such landmark civil rights laws as the Americans with Disabilities Act: wrote Pvfarca Rristo, chairperson of the ~ounci1,"~l'Tfnc council missed the vital point that psychosis itself>the very jrastifidlatio~~ for invc~luntaryinter-arentionsin the first place, can be "inharmonious" with the basic human impulse toward self-preservation. In its zeal to promote alternatives to medical and biochemical apprcaaches (such as so-called peer support-), the council dex~ouxlcederlectrc-rcsnvdsiwtherapy (ECT) and inswancc coverage for injroluntary hospitalizations.

Alternatives '99: The Guinea Pigs' Rebellion Since 19885 CblHS has fuxlded an annual consuxrrer-survivors' coxrferenrce called "Alternatiw" At one Adternati~iesc o n f e ~ n c ea ps;clhologist named Ai Siebcrt prescntcd a talk entitled '%uccessfimi Schizopbreni;ttrrhe Surv i w r krsonality; advertised in the conference prograln as a discttssion of ""haw schizophrenia is a healthy3valid, desirable condition, not a disorder."'"' Accoding to Siebert: "Schizophrenia has never been proven tu be

inmates Take Over t h e As~)lurra

an illness or disease, byhat is called schizophrenia in p u n g pcupie itplyears to bc a hcitrthy transformationat process that should be fi~cilitatedinstead of trcated*'%~lowironic that CMHS is supporting a movement that minirnizes the severity of mental illness and discourages the treatxnents and Ixograms far which CMHS itself, in its role as the government's adminis-" trator of public firnds for mental health trclatmegtt, is paying. 1 attended the four-day Alternatives '99 ccbr~fercncein ETorjrston in October of that year. There werc seminars on grassroots cprgax-trzing and on creating openings for consumer-survivors on thc boards of managed care organizations and ather social services agencies, Consumer-survivors were given alnple instruction in how to lobby ccongressyeople, stop involuntary commitment bills and get more hnding h m thc federal governmen. Everyone seemed to agree that the state-level success of the consumer-survivor movement had to be replicated at the national level, "There werc a rsumbcr of distractions during the Pistar-day eventpoetry readings, ciay-molding sessions, group skits. Pertraps appropriately? the nearby Caruso Dinner Theater was putting un a production of Shear ~Vladness,1 also heard dozens of personal testimonials about thc &uses o f the ""t;ystemn a n d the kilrmphs of: self-help, 'The "Memorial WdEYkwas meant to be a palpable reminder of the fdilure uE organized psychiatry. M o ~ ~ n t con d three huge poster boards were scores of colorcd three-by-five cards, each a ~ m e m b r a n c eof someone who had died, "Dickie Dow, Portland, Oregon. Consumer killed in police custody, Fall 2998:' read one, ""Rrrpert: a good hiend and next door neighbo-from all of us, Merit Hall, Long Beach." "In Memory of Tacky Jachner: Your star shined brightby, Barbara," It \was a sad and torrckiug dispfq yet I cot~idnot hctp but wonder tlow many of these people would have still bccn aliw if involuntary treatment laws werc more widely in use. To tuncede that involuntary treatment is sometimes necessary?I~owever, was bc)lond the capacity of these cor~sunaer-surviv~rs, who already felt so subjugated and powerless. In fact, a major theme of the lneeti~lg was that cansunxer-furvivors are the ""last rnino~itb',)'"I've always been struck by the similarities bctwecn our struggles and those s f women, minorities and homosexuals," said Jean Campbell, a consurner-survivor who is on the faculty of the tiniwrsity of Missouri School uf fvledicine in Co-

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lum"tsia "PVe are aid, disemlsowered, stigmatized, discrimixnated against, denied our humanity*" There was even a meeting-within-a-meeting called the P.Jational People uC Galor Consumer-Surviafor Network, also funded by CMHS, This W O - d q e.~.c;"nt was devoted to ""laming about the many ways discrimination against consumers exists (cage,race, crhnicity, sexual srientation, religion, gender, other disabilities, etc.), the 'isms,' and how discrimination and uppression are related tress^"^^ Sally Zinman of the state-funded California Network of Mental Health Clients attemlsted to document the experience of being a mcntbcr of the last mlnartty. In her ""strrdy;""funded by the state of California, Zinman discovered a "consumer-suzvivor ctrltu~'9rhatwas as recognizable as any eahnic culture, After interviewing 135 ce?nsu-nre~-s~lrvic~o~"s Ilir focus group settings, Zinman foul~dthat the nlost frequent self-descriptions we= " s e ~ m d - c l a scitizen:" ~ ""sereotypecl" and member of ""another civil rights movement." Sol31e spoke of' being "celebrated" as rnental health clie~lts,and others about r k iimportancc of "idcx^tti@[irag]with their consumer c~1ltt1rc.'~ Zinmal-t works with other diversity trainers (the conventi~nalkind who lecture about African American, Hispanic or Asian American cuftures) teaching the personnel. in. managed care urganizations atrout the coxrsearrrer culture, A few months befc~rethe Aternatives 999 conference, Zinman was one of a group of psychiatric "survivors" invited by Tipper (;ore to participate in thc F%ite Huuse Conference on Mental Healtile Zinman had wanted to engage the vice president's wife in a candid discussion about consumer-survivors and offer her ""eitiques of a system that often does harm:' as she w n ~ t ein an op-ed article, but did not get the opport u r ~ i t y . ~ ~

Stake-Level Follies 'I'hc activists iverc largely ignored at Mrs. Gore's tcjcviscd evem, but beyond the rmge o f the Hicg lights they are wieldirlg infiucncc, By 1997 more fhan half the statcs had at least one paid p s i t i o n for- a "CUXISLIMC~"

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in the central office of the state mental health department.'"^ sympathetic to the consumer-survivors was Eileen Elias that during her tenur~. as Massachrtsetts co~xmissiunerof mental heal& ciurirag the mid-1990s she sent a memo to state hospital staffmeinbers instructing them to allow thernsclves to bc put in restraints as an educational exercise,"VSwlrsequeszdy, advisers to the National Association for Sbte Mental: Health Program Directors suggested that training ibr ~~hysicians, nurses and social workers "migfit also include such first hand experiences as being admitted to an inpatient facility.?'z"~odney E. t:opeland, a psychologist and Vermont's cummissic~nerof mental health, issued a mea culpa to the cihizeary in which he said that the rnrntal health prukssiatn was guilty of "over-emphasis un pawer, control and patema4isnz"z" State-employed consumer-survivors have access to high-lewt meetingw Their abiIity to use the ~3oliticalclout of their dcpartlncnts gives ti~em considerable power over the administration of mental l~ealthscrviccs, Roughly thirty state mental health authorities have established offices of consumer affairs." These are generally staffed by consurner-survivors whose job, according to CMHS, is to "support consumer empowerment and self-help in their particular skate~~'~""JFederal bisck grants to slates require the esta'hlishnnent of a rnearedl heal& ptartkng council in each state to runonitor the allocation and. adequacy of mena;dl health semi~(1s.At feast half of the council sraff members rrmust be '4adttlt~ with serious inen~alillnaess avks are receiving (or have received) mental services" or hmily members of such people.?"At the kdcral level, CMWS c ~ a t e dthe GwnsumeriSufuvi'ifor Subcommittee to assist its o%vmNational Advisoq Council, "The creatio~lof this subcon~xnittecis a landmark c~ccasion,"" said C:R;lHS Director Bernard Arons. ""jf-t] continues our efforts to pmmotr: crsnsun-tcr/survivsrparticipation at @wrylevel af the n~errtalhealth system:""" ldeologucs comlnitted to the consumer-survivor ethos are often put in charge of state ofhces of patient affdirs. Darby knney, the director of recipient a k i r s of the New b r k State Office of hfental Health ancl a 13emher of h"ldNatior2's steerin~gcmmittce, is one, X n 2992 she was aypointed by the commissioner of mental health, Rlchard C. Sudes, to advise him on the perspectives of consumer-survivors in policymaking. By

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n1ril:Iewuti reports, she has consistently used her position to tllansart compulsory tpc.atment. This was the cxgeriea2ce of Paul F, Stavis, a taivyer who served as chief counsel of the New Uork State Cclmrr~issiorion. the Q u a l i ~ sf Care for the Mentaily Disabled. In 1935 Sta~riswar;asked by Clowrnor is rights advocacy ""Snce Penney docsnk thcliekc: in &reatmcnt,"hneNew York City psychiatrist told me, " b o wc m she be in a position to prtrmote quality in treatment services!" Other colleagues have wondered whether politicians and administrators endorse Penncy" rhetoric as an excuse to avoid spending money on thc costly needs of the mentally ill-an allegation fit for a tenacious inwstigative journaiist, X t is ilrapr~rtantto understand that radical coarsun~er-srxrvivc3rshave financial interests to protect as w11, 'Thmtlgh CbIEIS, they can apply for funds to dewlap ""peer-rurr programs.'%pplicants can also receive rncliney to establish ""zatioraali technical assistancc cetltcrs" and ""sate netkvork grants;" thc gc~aPsof which, according to "Guidance far Appfie'ants:hre to foster the "leadership skills of consurner organizations . . . [and] irrlprove coxx-rmuoication and C O C I ~ C T ~ ~amorlg ~ O M stakehotders and advocates in the mental hcdrh system:'-;-" According to the National Association of State &ientaI Health X1rcagram Ijircctors, New Vork State warded $5 miilion to consumer-run organizations in 1995, New Jersey $1.6 million and Tennessee $1.2 ~niXliaxa..~" X should aff-irm my conviction here that individuals who have in the past been very ilil with P S ? J C ~ Q ~or ~ Csevere mood disorders can do much that is pusiti\re, HCcn Srechc, for example, lectuscl; to patient groups, hrn-mily rnembers and the public on the importance of medication colnyliance. Others occupy advisory spots with local mentart health agencies; therc: i s a group called Schizophrenics Anonymous. l'ht difircs~ccbctweetl thcse individuals ancl men~bersof the radical conslxn~er-survivorn~avernen"k:s that they want ta make the current system function better, not tear it da~vn,'row"drc4 &at end, {hey use public funds constructively-for example, to sponsor drop -in centers, clubhouses, employment services a d self-help groups, which can provide desperately needed opportunities far sclcialization and morale-building, The problem is that consumer-run orgaalizaiictns vary grcatZy in quality "Wf~engovernment ageetcics first started to involve farmer pa-

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t i a h in the carly eighties in s d e r to help in ganning community scrvices, I thought it was a good idea:" Fulter Torrey tells me. ""Thc tragedy i s that the effort got hijacked by bureaucrats who ivclt. antipsychiatry and naturally gave funding to activist patients:'" Mentally ill irldividuals take a co~~sidcrable risk if they lnistakenly join one of the organizatims that puts victim politics befort. h e i r own clinical best interests, Eike the ones that actively discourage patients from cooperating with the conventional mcr~ralhealth syste~a-rand from taking n~cdication, It is certainly true that sorrlc af thc oldcr antipsychotic medications like 'Thorazine, Mellarif and klaldot were once g k n in doses corrsicjered too high by today" standards, Psychiatrists used to increase doses ahrupdy; now it is done more gradualljr. The side effects suffered by rnany patienh, such as oversedatisn, ""ctton-headsdness?" musde stifhess arrd tardivs: dyskinesia-ua1contr~1~ak~~e movements of the mouth and athsr parts of the body-made them understandably leery of those medications. Now dosing schedules are more refined. and the new antipsychotics produce fiswr disabling side effects, But many consumer-survivors who had bad experiences with medication in the 1970s and 1980s are fighting an irnage of pharmacotherapy that no longer applies. They don't rilalizeor don't want to realize-how lnuch things have changed.

Not Really All That Sick One migIit reasonably ask: Could someone like Margaret Mary KT, David Letterman's stallcer, hold a responsible position in a government agency? Of course not, And therein lies one of: the pruble~nswith Ihe radical consumer-survivor movement. Its leaders are relatively weil hlnctioning, as mental patiellts go. I could find no systematic survey of the diagnoses or current sy-mpmrm~proHe of the movement% nmnost actilrc members, brat it is safe to say that their activities require the energ5 focus and coherence that elude people who are hallucinating, incoherent, clinically paranoid or unable to concentrate, The radical consumer-survivors spend mrrch of their t i m e speakrzg to audiences, mobilizing actkists, applying for grant money, (organizing

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and attending conferences, lobbying politicians and advising state and federal agencies involved with t r e a t ~ ~ e and a t disabikity rights.. All the ivhile, many arc ~ceivixlgdisability gaymen& because they consider themselves too ill to hold a job, Ykt they manage to marshal their resources in the effort to preserve the "right" of psychotic people to refuse medication, to ensure that hospitals abandon the use of restraints and to ovcrturll oulpatiexlt commitment taivs, In doing so, they work against the best intcmsts of those who are most seriously ill-hose too psychotic to competently ~ h s medication, c too aggwssiw or confused to be sak without restraint and too unreliable to take the lnedicatiuns that keep tfzern from lapsing back into psychssis. Bcrnard Zubcx; for one, is appalled by the rhetoric of activists who preskrane to speak for him. In 1952, when he was rrineteen and living in Paris, he tried suicide by hurling himself backward into the path of a taxi. He spent eight years, from 1982 to 1989, in and out of psychiatric hospitals and jails, setting srnall fires, homeless and filthy on the street. ("I Xoclkd like Alathony FIopkins in the movie Then Zuber was admitted to the West Los Angeles Veterans' i-fosgitat. He hacl celbuli-tis (infection sE the skin) and was n2alnourished; he stayed mu& and curlcid in a fetal position, rchsing to eat. He denied wanting to kill himself because, as he told psychiatrists, 'c19m~1Ixadydead,"" convinced he had been killed years before under the wheels of that Parisian taxi. Clearly he was in no position to give informed consellt for treatment and would have died had his psychiatris~snot petitioned the court to authorize surgery for an intestinal blockage that developed during the hospitalization. It was not until 1 9 0 that the doctors diagnosed bipolar disorder; before then his diagnosis bad been depression. ?Uay Zuber w r k s as a clerk b r a state agency. As an active member of the Cafifc3rnia National rillianee for the Mcntalfy flf (NAMI), he also supports involuntary t~atment-he credits it with saving his Me, He is clismayd by the efforts of a nzan nanaed Rona S~hraiber~ who is the director of the Office of Consumer Affairs of the Los d4ngelesCounty De-partment of Mental Heafhh. Zlabcr says that Schraiber is suppoxd to be ad~~isiny, the state's mental health director abollt: heEyisag people like lrirn

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but instead is fighting against involuntary care, "Sckzraiber and the other cc~~lsurncr-sur~~ivors portray a mcdicai issue as a civil rights issue,'" Zrrber told me. ""Sornc even say they don't bcliew in the hmcfical modcl' of mental illrress. So what was hagperling to me? There wasnk something wrong with my brain! I just decided to live a certain wq?Oh, please:' bloe Armstrtrng, a fifty-four-year-& resident of Cambridge, Massachusetts, with schizophrenia, agrees with Zuber on the issue of compulsory care. Art~~strong spent rougXlly a dozer1 y a r s in mental ftacitities. Many "professional consumers:' as he calls thcrn, really "don't have enough contact with sick pcagIc, and so they are nat a true voice for us:'97 Sclrvae peaple simply need to live in state hospitals, he insists, s r should be highly supervised in pmgrams like outpaticra~tcammitment. Gortstn~~er-survivors, an the uther hand, nzaintain that anyone can live independently with pmper ccrn~munitysupports that are im~di\liduajized to the patient, iflelltding modified vchides and other special cquiymiat, rto xxlattea-what the cost, b b e r t E, N'iklicl, a social w~srkrer,and his colleagues describe the consurner-srarviw mind-set in an article in Psychiatric Services: "Living in the community is viewed as a civil right and a necessary antidote to the victimization, subtle and not-so-sub-rjie,that has accsnzpanied the status of menbl patient in most B7e&ernindustrialized ~ u ~ ~ u I . c s P ~ " As the National Emyotvcrl~entCcnierk director-,Daniel B. Fishcn; a physician and fornmer gsycEziatric patient, proclaims: '39% are not cases, and we do not want te, be managed. Instead CYC seek to work with personal care attendants i i k people with other disabilities:"TTke spate of Massachusetts shows how fir a c c ~ t x l ~ n ~ d acan t i ogo: ~ ~ it actually bought a patient a house and suppiicd him with attendants twenty-fc3ur hours a day.40 Hc needed round-the-clock monitoring because one manifestation of his mental sonditioa~was Ilabitual fire-setting. 'I'he psychiatrist Jeffrey L. Gellcr, then medical director of the county adjacent to the one in which this patient resided, calculated that the arrangernc'nt cast Si50,006 a year-rnore than three tilnes the cost of supervising and caring for this individual in the state hospiraf, Inclependent living PPC)VCCE deadly for Shirttey Martos of Modcs~o, California. In 1993 the thirty-eight-year-oln Mattos was set up in a boardand-care home where she was to be under constant observation by case

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workers. A few nronths eadter, according ta an account in the Los ilr~geles Ernes, M~attctswas admitted to Nitpa State Hospitd bccause she had an odd habit of swaUawing objects such as pens and pencils when she hccame angry or frustrated." Having undergone more than fifty operations to remove these objects, shc still wanted to Jive independently About a year afrcr Mattos and her lawyer sccurcd her d i s c h a ~ efrom N d p a Stakc (over the objections of her psychiatrists), she swallowed a pencil and died soon after having surgery to remove it. "That yt.ax;""said Ban Pone, Mattos's lawyer, "was probably one of thc best, if not thc best year, of hcr life. She was able ta Iive out hex dreanz." Even b r patients who do not require protection Emm themwlves, independent living is not alwap the hest approach. ""f can be devastatingly lonely and isolated;? Armstrong s q s . ""Sonre people actually prefer a sanctuary--not ail, hut some." He thinks the mental health system needs " m o huma~~ity~"blrt ~ he duesn? r:svant it dismanded. ""Ill need medication and supervision for the rest of my Life; I freely a h i t it. 1 wish others WOUI d." The state agencies and poIiticiaas are making a gra\rre ermr in assusning that those who claim to represent consumers are actuitiily- representative of them, explains D, I. Jaffe, a blander of the Treatment Advocacy Centcl; which advc3cates the benclits of involuntary t ~ a t m e n for t the severely mentally ill, "The people I most worry about are tile ones who are too psychotic to eve11 know they are ill:' Jaffe says." That describes roughly half of all individuals with schizophrenia. But the consumer-survivors would let people like 1.arr-y Hogue run free. Dubbed the 'Wild Man of Ninefy-S1~"; XFttrcel,'9-1ogue terrorized the Upper %rest Sidc of Manhattan in the early 1998s by screaming at people, lunging out at them from between p a r k d cars and destroying property Homeless and mentally ill, he became violent when hc used crack cocaine, but local judges released him to thc streets as soon as he was not overtly dangerous. Upon release he would stop his medication, use cocaine and end up back in jail ar in the pvchiatric ermzergcncy room in a cycle that went on for. years. Or consider the case of Joyce Brawn, who in 1987 becarme ;3 test case for civil liberties. Homeless and wildly p s ~ h o t i c screaming , obscenities

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and smeared witin her BWTZ.excrement, tlrown (who called Izerself BiElie Roggs) was taken against her will to New Yorki Rellevue hospital. In the legal batde over whether Brown, forty p a r s old at the time, cod$ be released, the presiding jaidge, Ritibert Lippunan, sided with Brown, who called herself a political prisoner and was represented by the New I'ork Civil Liberties Urnisn (NYCLU), Society, not Brown, was sick, Judge tippman insisted, declaring that "the blarne and shame must attach to us:'43 After her discharge, the NYGLU employed her far a while as a rfceptionist, Xt also helped arrarlge a speaking engagement far her at Hwvard Law School; the title OF her talk was ""The Xlorrzeless Crisis: A. Street View." Soon, however, Brown was back living over the steam grate she caUed home, For a while in the early 1990s her family bad no ictea where she was, but acquaintances told the New York Times that she lived in a group hor-ile,'i.qSkewas back at Bellevrre at least once, but as of the sprit~g of 2000 she was ~ 1 sin. t an institution, accofaing to Norman Siege1 of the NVC;bdU,* "4s he had promised Joyce Brown, he would not give out dekiils about whether she was w r k i n g or living in a gmup home.~~"~*;onaehave wunbcrcd whether she suf8"crc.dfrom hcr brush witl~falne. "All the exposurt., going to Warvard and all, in the end was very detrimental in terms of coming to terms with who she really is:' says roan Olson, director of an ;%gem)? that once provided housing for Brown. Rabert Goutd, Brown's farn x r psychiatrist, agrees, ""In retrospect, it was too rn11c11."47

A Brief History of Consumerism The radical consuxner-surviw znovemernt g ~ out w of the 1960s libtrationist ethos, wltich S;IN~mental patients as a class of social dissidez~tand psychiatry as an agent of social control. In the words of the Marxist social critic Mcrbert Marcusc, psychiatry was seen as "one of the most e f f e i t i ~ engines of suppression." Explanations for the origins of psychosis abounded, Sarnc impiicakd psycbiatv itseBE According to Erving Coffman, author of the inillliential Asy/t,lums ( t 96l), thc mental hospital itself imposed ""abasements, degradation, humiliation and prohrratio~nsof the self:' reinforcing the psychopathology it was meant to cure. R. D. Laing, a

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Scottish psychiatrist, thought of psychosis as a rational adaptation to an insane warld, ltn the poprllar culture, films like King ofHea~t$(1966) and b o o h like Ker~Kesey's One FIew aver the CIZ(ck'o03Nest (1462) s e ~ ~ f i ~ n e n talized the insane as ernbadlying truth, sponpaneity and innocence, their souls crushed by stonr-hearted authoritarians. "Every psychotic is a potel~tialsage or healer:' wrote the physician Andrcw \Veil, later famous as at1 alternative medicine guru, in his t972 book The RTaturalkfii~d By 1974 the lzrrmbcr of patients in psychiatric hospitals bad Zsecn mare than halwd, from slightly more than five hrxndrcd thousancl in the mid-1990s. Once released, m a y of these ex-patients gravitated to one artorher, ""E daily life they were shunned and stigmatized,'" write Raei Tean lsaac and Virginia Amat in AVacllaes in the Sfreets, They bunif solace in '%an ideology that cast them as rornarrtia:figures cornbating oppression, individuals whose perceptions of the world had equal if not greater validity than those of "sane' societye"4g The Insane Liberatior~Frs1.x.~: was founded in 1970 in Portland, Oregon, In 1971 the Mental Patients Liberation Project and the Mental Patients Liberation Front 3ppean.d in New York and Boston, r e s p c c t i ~ l y ~ The next )fear formet- patients in San Francisco organized the Network Against P s ~ h i a t r i cAssault and the kladrtess News Network, The first Ccsnkrence on Human Rigllts and Psychiatric Oppression was k~eldin Retrait in 1973, Taday the nlost vocal antipsychiatry consumer-survivor groups are the Nationd Enapowermwt Center near Boston, the National Association far Ri&& Protection and ildvucac): in Rapid City, South Dakota, and the Support Coalition in Eugene, Oregon. Working with civil liberties ] a v e r s and patients' rights groups like the Mcrltal Health Law Project (which changed its name to the Bazelon Cexzter for:Mental Health Law in Z993), activists have lobbied to scale back commitment laws and block involuntary treatment Laws from being passed or impjemcnted. They have championed the rigl~kof sewrely ill patielits to refuse treatment (rep~seartingthe expressed wishes of their client-patients even %.hen they arc delusiepnal) and campaigned agair~st electroconvulsive therapy."' They have succeeded in getting lawmakers in a r~urnberof states, ir~cludingCaiihnzia, Massachrxsetts, 'Tennessee and

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rrexas, to s o l l a b o r ~ ein writing and, in some cases, passing legislation re-

stricting the madability o f ECTeso ECIrT; or shock thcrapfi has a had public image, crystallizeci in Inany az~incfsby the horrific scene in the 1975 film version of' 031e Flew o.tYerthe C3ickoa's hTesjteIn het, EGT is one of the most effective treatments available for severe depression, I7ct major public hospitals, including Bellcvt~e, Coney Island, Kings County and Woodhulr Hospitals in New York City, have stopped pcrforr~~ing Ef:T because uf pressure from collsumtr g r o ~ p s . 5W ~ e n the first-ever surgeon general's report on mental health, isstaed in 1999, g;tkre a clean bill of health ro EC'Z', the consumer-survivor cc~mrmunitywas livid, the New ki)rk T i ~ t f ireported," ?~ ":Ysurties threaten to re-traumatize these survivc?rs," h m e d David Oaks in a Ietter to {he surgeon generale33 Conwmer-sumiw idedogy has t?Ou~~d exprerssion in the Pr~k~"ctioll and Advacacy for the Mentally 111programs (P&A) cxatcd by C:ongrcss in 1986. Like so many other consumer-survivor-frie11~31yenterprises, it is funded by (:MI-IS, The fifty protectior~and ad-vacaq pmgrams, one Sirr each state, were created to investigate allegations of abuse and neglect of mental patients in hospitals and gmup homes. Federal regulations rcquire$ that protection and advocacy programs establish a mental health advisory council and that 60 percent of the council membership be current or farrraer psychiatric: patients or their family tnembers--a good mally of whom, no doubt, offer useful suggestions. Indeed, many pruteition ancl advocacy programs haw scored important victories, ullcovering serious cases of mistreatment and enacting soxne valuable reforms. The New York State program, for cxa~~lplc, was Esponsible for making Clozaril, a highly effective but expensive antipsychskic drug, available to patients on Medicaid, But in some other states time pmtectisn ar-rd advocacy programs have collahorakd with civil likcrtics lawyers to vbstruct patic~~ts" access to care, 112 Iatc f 999, for example, Vermont's P&A ~nanagedto overturn a law making it easier to medicate psychotic individuafs.5" "1 New jersey, IE7&Alawyers abandoned a shortlived hospital monitoring program and instead retur~ledto actvising patients of their legal right to demand release and refuse medisation.35

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A tragic exawr~pleof P&A intrusion occurred in 'Exas in 1987, I)espite a mother's warning to the P&ii agency that her hospitalized (and suicidal) daughter wntecl to leave the San Antonio state hospital, a Ptkk lawyer went to the daughter, ascertained her desire to leave and then represented her. After her discharge was secured, the daughter killed herself. ?'his story was reported to the authors of Awladfiessif1 the Stwe~sby Carmen Johnson, one of the few metnbers of the Texas PStA advisory board who was not a recavering mentally 111 person, 14fl1atfloored Johnssn even more than the girl's release and subsequent suicide was the board's reaction: they reported i t as a "'successfufly closed*casee3'SG The hraerican Psychiatric Asstztliatisn has a%soobjected to the priorities of many PtkA Lawyers, "We are deeply concerned," the association wrote in 2995 in a fetter to Bcmard Arons of Ch'lHS, "hat the critical elelncnt of protecting patients has bee13 seriously under-emphasized."V Little has changed, howcver. The P&L?;$response to outpatient cummitn~ent has exernplitied their practice of sacrificing protection for advocacy An item in the newsletter of the National Association of Protection and Advocacy Sptems, Pr~~kction and A ~ ~ Y C Systel~zs I C G L ~News, rhctsrically asks whether sutpatie~lti-ummitment is "Prescription or fkrsecution?" "and answers, implii~itly~ th& it is the latter,-'" W e n PkkA agencies have been unable to derail commitment yolicies outtight, they have hacl no c h t ~ i ebut to adopt the rule uC watchdog, rnaking sure the policies are fairly and efficiently applied. Ironically, it is just this kinct of oversight that P&A agencics should have embraced as their job in the first place and that Congress intended as their mission all dong. Unfortunately time and money h a w been wasted on their initial cfforts to dckat otttgatjcnt commitmrnt, Politicians are exceedingly vuEl~erabiisto pressure from constrmersurviwr groups, ,Jilthc~ughthey make strange bedkllows indeed, budgetconscious politicians who want ts save money arc syr3anpathetic to advocates who want to dis~nantlethe expensive state inslitulic~ns.Legislators get understandably nervous when told that their constituents' rights are being trampled, but they rarely know enough about the inanagemcnt of severe n-nental illness to evaluate the ccrl-nswwaer-survivors%histrionic

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clairns of having been abused through involrrntary treatxnent policies, Such claims make them quick to grallt conassions. In installccs where actual abuse a r nedccr has been uncovered, politicians are again quick to take the advice of vocal consumer-survivor groups, not realizing that their recosnxncndations will only cxate mure yroblernse

The Commonsense Family Movement Orre of the ices against the antips~hiatryextremism of carrstrmer-survivors is the so-called farnib movement, ted by the National Raliance for the Menally 111. Begun in 1978 by parents seeking services far their se%rely mentalliy iZI children, NAMX and the consumer-survivors haw clashed bitterty o w r the virtkles sf involuntary treatment. "The alliance lobt>iesfar txatment scrviccs and research into discascs Iikc schizopbrcnia and bipolar illness and is vocal atlout tightening i x ~ v o l u ~ ~trcatn~ent ~ary laws, It I-tas 195,000 membcrs, 70 percent of wham have adult children suffering from schizophrenia or bipolar illnessesg Consumer-survivors paint NAMI as a bunch of parents seeking to control their children, in part, to alleviate their own guilt at hming raised a child who developed a mental glness, Sylvia Caras, a disabdity rights advocate and former psychiatric patient in Santa Cruz, California, says that families fincl ""exoneration" when medications are prescribed for their children. Phar~nacologythen becomes thc parents' way to "medicate socid disarraySTarashas kit ""thcix shunning sixlce 1 started p b l i c f ~to f Rformulate what T thought about my own experiences with the mental health systcm.'3SBnc accuses families who commit ~ l a t i v c to s treatment of trying to silence them. Because these Families acknowledge the occasional need for rcstrair~ts,sedation or seclusion, Caras accuses then1 of endorsing practices that have a "chilling effect on civil rights:' Today's lnental health approaches, she declares, "will be remembered along with the Safem witchcrafi trials as a dishonorable scapc-goating of transforrnatil~e

experience^."^^^ Cor.lsramcr-surviv~rsadsu l s b h st~ntlouslyagainst extending insurance coverage, including Medicare and Medicaid, to hospitals that care for

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involuntarily committed patients. 'l'tne hnti-Ps~hiatryCoalition, a mid%resternvolunteer group ola"people who file1 wc have been harmed by psychiatry:" gacs a step I'urthe~Oddly enough, the group fohbicd h a d in btassachrsseus to defeat a bill that would have required that psychiatric scrviccs be covered on the same basis as other medical and surgical care. As thc coalition prochimed: Mental health parity [cotrerage] will encourage more human rights violations: unnecessary psychiatric incarcerattcjn (""hospitaiizatiic~n"),l~armfulpsychiatric drugs unnecessarily imposed on kxopLe against their will, mare brain-damaged pt"opt&y psychiatry" ddrggs and ciectr-ctshock. . . nlore peopite with znnjustificd psychiatric stigma for the remainder o f "r~cirtifetil~le~. Contrary to poyrrlar beliel; psychiatry is not health care. It is a form of social cc?ntrlies,~~ With about 10 to 15 percent of jail inmates x-raticsnwidcknown to be mentally ill i~~dividtaals ~cvhowere arrested for disruptive behmiors that cotlld have been controlled with medication or supervision, these courts could make a real impact, Patient-offedcrs could be ushered into supervised treat~nentand kept out of jail (where they arc oftell brutalized by other inmates), Meanwhile, jail crowding wotald be rcliewd, And the crowding can be extreme. "The nation's largest ~nentdlinstitution:' is how the Ncav b r k Tinfesreferred to the Los AngcIcz; Coul-~ty jail." On any giwn day in the spring of 2000, it held more than two thousand inmates who suffcrcd from selrere lncntal illness. The largest mental institution in California, Patton Statc Hospital in Sal1 Bernardim County, has around hundred patie11ts~6~~

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Melltal keaXth courts are gaining p o p u t a r i ~'There arc glarrs in Congress to offer grants through the U.S. Attorney General's Office to set up and evaluate twenty-Eve of the coltras between 2008 and 2005, Mirag Courlty in Washington State unveiled its mental health court in the winter of 1999, and the NAMI of Multnomah County, Oregon, has proposed establishing one, The Oregon proposal inlmediatclgi sparked panic in the state's consurner-sktrvivar community, M'hat's next, asked Pat Rissel; a consumer-survivor, "'AGican-Annerican' courts, or maybe "ay a d Iesbiankcourts?'"5 Iudi Chamberiiin of the National Empowerment Center nominated "apartheid courts,'"'"" These fi41-in-the-victirn-csuggestions reflect the consumer-survivors' collective self-image as "the last rninoritye3'h7

The Consumer-Survivor Code of Silertce 7"e)e sure, not. all psychiatric patients oppose i~~volux~tary t ~ a t m c n tre, ject psychiaric medication or regard mental illness as a transformaticfe experience. "'"12~1~get excommunicated from the consumer-survivor movement if you speak againd the status quo," says Eve, a former psychcltric patient who works with a visiting nrrrse servia in New York Clty.68 IWost of her patients suffer from schizopk~niaor manic-cfcprcssive illness. Thirty-eight, illarried and the mother of a seven-year-old daughter, Eve spent xnucb of her adolescence institutionalized, After her daughter was born, hcr postparturn dcpressiun was treated wit11 ECX: Scwral years later she sdfexcd another bout af dqrcssion and agreed to h a w ECT again. Now she takes an antidepressant and a mood stabilizer and is doing well. Like Ken Steele, she calls bersctf a consumer-survivor, but unlike Steele, Eve feels that she has to go along with the party line. She refr~sedta let me use her real nanlc, Evc was sncc active with thc radical cccsnsurner-survi\7col- T P I O V C M I ~ ~ I ~ but has putled back because, she says, it is "too closed-minded," "Still, she is reluctant ta disagree openly lest she be frozen out dtogether. She dcparts from the consumer-survivor party line in two ways. She fnvors involuntary com~nitmexnt(about half of her patients are under court o d e r to receive treatment and take medications), and sl-isesees value in ECT. Evc

inmates Take Over t h e As~)lurra

telb of a. texlarat of a housing program who stopped his antipsychotic medication, began hallucinating and went back to using crack cocaine. Psychotic and aggressive, he got into a figha and broke his ar~n-a stroke of luck since it landed hirn in the hospital. Odlerwise, Eve says, the housing director would have '"just let him deteriorate, because that was what her politks said she should do." Eve didn't protest---she knew it wasn't right to let the man remain so sick, but she also didn't want to get fired for being a traubtc~nake~ It is at this level of day-to-day management that ideology overrides clinical judgment, with f"rightea3ing consequences, Many clinicians report sin~ilitrstories: patients stop taking their medication and $ken become too psychotic to mnlain in supervised housing, Thc ""cumpassionate" xresyonse of the consumer-friendly management has been to evict these patients rather than obtain court orders for treatment. Consumersurvivor aclv~cacygroups like the Bazclon Cemcr for Mental Health Law insist: that treatment not be required as a condition of residenrcc, and they arc y uite adept: at creating legal and political obstacles for facilities that disagrce.bc' In their essay "Housing as a %a1 of Coercion," Hmry Kormaxz and his colleagues at a~cepting.7~

Frese's ~-ccovery> incidentally, was so spectacular that he went on to earn a doctorate in psycl-hology and now works in a state hosyi~dX. Not everyone who is taken to the bospitd unwillingly> however, i s later thankful. I rcmember Karen, a young Lvoman wirh schizophrenia who struggled with the policemalx who brought her irlto our erraergency room. She could f-~aveeasily been a r ~ s t e dfor disturbing the peace since she had been throwing garbage at pssers1~yand screaming at thc top of her lungs, 1 wmtcd to admit her to the hospitai, but Karen insisted on. going hack to the New Haven streets, though the temperature was four degrees and she had no money. 7"cp r n a k matters worse, she thought that Agent MuXder of the TV' shoiv 771e X-Fidi-rs was prcttectixlg her from beililg vaporized. So I cornrnitted lacr to the t2ospital. A .cveek later she was still angry at me for making her slay in the hospital, but at least she had started taking her medication again and agreed to enter a group home. As long as there is ser;crc mental illness, there will always he yeog7le Eke Karcn. But data suggest that most patients who arc cucrccd into the hospital will adnowledge that they needed the care. One cent study in the American journal c;tff"sycI~irlt~ interviewed patients two d q s after admission and then again se1c~erafwc&s latereH'"t two days dmost h d f of all patients admitted irwoluntaray said thaa they had needed to be admined. Only 5 percent had changed their minds when interviewed again severat weeks

later. Of the patiel~tswho initiaEy felt that they did not need to be admitted (about 52 percent), roughly haif had changed their minds a few weeh after adn~ission,saying tlmt the deckion to haspitalkc them agdirrst their will was justified, Thus, over three-qeiatters oC the study sample ultimately felt that their treatment had been warranted-though fw expressed gratitude as effusively as Sbdey and F ~ s c .the , researchers pointed ouf.

The Bellevue Experience &/last states permit outpatient commitment, although it is employed only sporadicalljr. Paul S, Applebaum of the hi-uersity of Massachusetts School of iVedicine in iVorcester warned in 1986 that oulpalierlt cctmrnitmcnt could Inme demonstrated value only if the civil liberties l a ~ ~ ecooperrs ated by realistically assessing the necds of their clients." AAer longtime resistance to the IJassage of outpatient commitment legislation, the New York Civil Lit3erties tiniarz, the Mental Eiiygiene Legal Sewice (a nonproft advoraq group) and the New York Statc Bar Association" (Committee on Mental and Physical Disability findly agreed ta a law establishing a l k ited pilot progran1 in 1994. In 1995 New York initiated a pilot project at Manhattan's BeUevuc. Hosy3i~aLto see whether court -ordered treatn~ent and intensive outpatient services reduced hospital stays for severely mentally ill people with a history of disastrous consequences wl-rel~they stcpppecl their medication, I11 December 1.998arx independent research team evaluated the pilot and announced the results, The court-orderecf group spent a ~nediansix w e k s in the hospital while the non-coerced group spent fuurtecn. Over twice as many in the latter group were seat on far longer-tcnn care to a state haspital. These results arc cvcn more impressive considering that patients in t l x court-crrdcrecl group were morc Iikety to abuse drugs and alcohol, behavior tha.t further increases the risk of h o s ~ ~ i t a l ? ~ a ~ i o n ~ ~ ~ In December 1998 the New York City Department of Mental IIealth held a hearing at BeBlevuc to help decicle what would happen after the project's expiration in June 1999. A procession of consumer-survivor acs rights groups like the Urban Justice Centen; tivists, including i 3 ~ e r for

inmates Take Over t h e As~)lurra

testified against outpatient com~nitment.Same of the witnesses wert. on the state payroll, elraplsyed as ""per specialisb'3y the Office of &%eaxl Health; sewrali %'ere members of the l"v1en~alPatients Liberation L411h~~cc, a group that also receives state funding. "Psyshiatry kills:' a frazzled young black woman kr>m the Support Q:oalition warned the audiencc,s"\Ve9re living in Nazi Gcrman)l:'shc added. Then she played the race card: Far a long tirnc African Americans have been prirx~argitargets of the mental fiealtb system, Carganizctitictns like the National Alliance far the iMei-ntally111, plus federal and state goc"cllrnlnents,are campaigning now to escalate psychiatric oppression of Africdn Americans. A big part of this campaign is to increase the use of court orders and other a~ercioxrto force psychiatric drtlrgs into people Livii~gOUI in the community itself, such thrr~raghlegal orders called "in~~ofuntary outpatient coramrnitment:" This amounts to the governmexst and the drug industry gusk~ingdrugs into the cun~munity,@~

Althorngh every one of' the witnesses who act trnfty had experience with the Bellevue pilot program (patients, their family melllbers, staff) favcrrcd its continuation, nearly half uf the forty-five witnesses spoke out agilinst outyatien t col31mitment. "Consurner-survivors and their advocates are stvept up in denying the reality of mental illness,'" says I-Iowad Telson, the psychiatrist who directed the Bellevue project." '"'rhey blame s take their n~cdicationon everything but the illthe fdct that p a t i e ~ don't ness itsctS: Constrmer-survivors misguidedly think that medicalion would be unnecessary if 017LY the staff were more compassionate or provided more services.'Tet3as rI'elson paints out, and even soxne critics admit, the Rellevue project gave excellent services. And the fact remains that psycl-rosis itself can make pcoyle resistant to taking medications, About one in two afflicted patients are so delusional, and their thinking so disordered, that they sixnpDy haw no insight into the fact &at they arc ilk86 Despite the controversy skrrrorrxrdlng the kllevrrc prolject, Crelsonis a hero to the patients in his program and their families. Mel Silverma~~, ~rlmosefc~rty-thrce-year-C~IJ sun, a Czornell graduate, is a patient in the Bellevue project, tesdfitd at the hearings that he is the envy of other par-

73

ents with mentally ill children, In Saverman's words: "My son is doing better now than he ever I-tas during the last twenty-three years of his illness, You name the hospital in the New b r k C:ity metro arca, and he" been irz it. He is rrow on an even keel far t41e first tinre in so long." Roxame Laltqtaetot also testified. "Afaes our son refused to continue a new medication, we i.;?ep.~ frantic. Me shrieked, Eaugbed hptcrically and stog3ped visiting us because the voices in his bead forbad hiln to come up to the tenth floor, where the apartment is. [Now in the Belicvue program] WC parexits arc relieved. Our son has not stopped taking medication nor decsnaprnsated since he was last in the hospital:" \$%en ptients, parents and clinicians spoke movindy about outpatie~ltcommitment-several proclaiming it '"kifesa~ing"~11-r.any o f the consun~er-survivorsin the audience booed and lzeckled thenn, me11 one of the patients left the podium after describing how much he had improved on the program, catcalls of "traitor" echoed through the auditorium. Saving the Beljevtle program took un added urgency when, three weeks after the hearings, thirty-two-year-old Kendra i4/ebcEale was pushed to hcr death undcr a Manhattan subwq train. Andrew Goldstein, a man wi& schizophrenia who was about ivebdatc's age, was charged with the crime, Goldstein had been in and szlt of L~ospitals,Eaalhay houses a d clinics, :tfa.alaytimes he himself askcd to be admitted to the bospt~al,!&Then he took medication, he was s ~ b l ewlrerr ; he stopped, he spiraled back into the abyss of psychosis.R' Out of Kendra Webdale's tragedy callle two good things. The first was "Kendra's Law," passed by the New York legislature in the summer of 2998; it extended the Bellevue program and expanded outpatient corn~nitmcntpolicies statcwidc, The second was Governor Cicorge Pdtaki's Jecisisn to in- pose a moratorirnm OTI. hospitat discharges and to put more money toward outpatient programs." "edictably, consumer-survivors condemned the moratorium, insisting that only more outpatient servi~cs and residential f~cilitiesweriz needed, Granled, better outpatient care and housing are needed, but no matter how sophisticated and accornme>dating they are, these measures will never be eilough for all patients. The protection of institutions and the oversight of Kendra's Law are critical for a small but yotelltially dangerous minority*

inmates Take Over t h e As~)lurra

Yet Kerxdra's Law itself almost did not survive the consunlers and the civil liberties bar, A kcy senator, Thornas Libous, etlairman of the Senate Mental Health Committee, was set to vote against the bill, probhly influenced in his decision by nlental health "consumers:' their legal advocates, advocates fbr thc homeless and even sox-r~e""soA on con~mittnent"n~el?tal. health professionals who testified before his cormzmitke," Yn the end, Libous did vote for Kendra's Law, but I suspect that, like rnany t3oliticians trying to balance a respect for civil rights with the need far legitimate paterrrabsm, hc was s~vayedby consrrmcrs' aflcgatitrns that outpatient cotnrnitment was "torturousl"" ""coercive" manQ""dispropurtionalely aimec'i at peoylc of ~olod"~]

The True Shame In 1948Mbert Delttsch shocked the world with SIznmc o f f h eStates1 his expos&of abuses in state psychiatric hospitals, The horrors he described have mosaly disappeared, although newspapers stilt carry the occasionai. investigatiw accoulrt of a buses in a state f a c j l i t ~ In ~ ] the dystoyic worldview of the radicd consanmcr-survivors, however, the ~nentall~caiithsystem remains a s i ~ a k xpia, Yet that vcry system provides the money with \*rhich they have financed a small industry of grievance and entitlement. It i s the same ha&d sysenl that has beat over baclcward to create places for consumer-survivors in its organizational charts. So much for oppression. The point of ilnposing treatment is ta heltp gstaticnts attain autmomy to h d p them break out uf the figuratirrc straitjacket binding thought and will. So mally pcuple with untreated schizophrenia become incapable of kcing even the modest challenges of ordinary life, rlluch less exercising their rights as individuals. Being required to take medication i s hardly a violation of thc civil rights of a persun who is too ill to exercise free will in the first place. The freedom to be psychotic is not freedom. As a psychiatrist and a taxpayex; I find it: a tragecSy. that consumersurvivors spend their time and energy-and public funds that could tsc going to patient care-fighting against policies that can help tklollsands arc far sickcr than they are and, one hopes, will ever be, I realize that the political fi$zt may itself be a form of therapy for consumer-survivm:

75

it gives them hcus, identity and a social etwo work. It fz111ncls their energies and large reserves of anger. They are right to want a sense of purpose; we i 3 1 need one, But the price of their ""therapy'\rnaast not be paid by the very people they pasvort to protect, 1 nlust also reservc criticis~nf > rthe mental hcaljth administrators, some of hihorn are? psychiatrkts, Tragically they seem willing to sacrifice the needs of those with the most severe illnesses to political correctness and to the expedienq af placating the vocal and annoying consumer-survivor lobby. k%khaw more effective tmatmicnts, both sociaf and pharmacological, than ever in the liistory of ps~hiata"-?r, and it is a shame when ill peoyle arc. denied them, By supporting consumer-survivsr activities---or by simply saying nothing when they are give11 funding ur administrative control--nnental health administrators are yrsrnoting a motPernentthat has had disastrous consequences fc~rpeople with severe psychiatric illness.

Nursing Grudges

N

w e SUMMER OF 1998 it group ctf nurses gathered at a uniwrsity in

New England for a graduate-level class. Tust as the class was ending, a groundskeeper who had been working in the heat outdoors walked in and told the nurses he was feeling Fdint. Earlier in the week, he explained, he had sufkred a hard blow to the head*Full of symyalhy and concern, the nurses jumped into action. Here is what these trained pr-c~fessic~nah did, Numercr~~s pairs of hallds began waving a few inches from thc groundskceper's body as the nurses assessed his ""hmemrgy Geld," One sltldent toid him that what he really needed was "a good cry." Finally, one nurse thought to put together the man's s y m p t o m wit12 hbs recent head trauma and suspected, carrcctiy, that a blood clot was farming arokrrad his braira, The rnan required emergency lnrdical attention to relieve the life-threatening condition, The quick-thinking stuctent who rushed thc groundskeeper off to the hospital was merely acting as any trained nurse wauld, The heartstopping yuestiull is: )%Thaton earth were his cEassmates, all fellow nurses, doing? The ans'kcleris "heraperrtic taucf?;' or 7'T Developed in the 19770s by Dolores Krieger (no relation to Nancy Krieger), a professor of nursing at New RH-kUniversity, and her lnentor Dora Kunz, TT draws sn a theory of life force fro13 Eastern religions and from the concey t of animal magnetism postulated during tlw eighteenth centrrry Contrary to what its

name suggests, 'IT' (also called reiki) is not deriwd fr-arn the evarzgeiical tradition of laying-on-of-hands prazticed by fditb healers. In &c& no hands s w r touch the patient, instead, practitioners sweep their hands over the p t i e n t to adjust the ""human energy field" that suyaposedly stlrrlaunds and penetrates him. A freely flowing and symmetrical field is a prerequi-site for health, practitioners claim, and by resolving energy blockages, TT can treat nlany problems, including high blood pressure, premenstrual cramps and lingering infections, Although 1'1' fails to pass objective tests of effectiveness, it is warmly embraced by the two mnost puwerft~Pr-tursing organizations in the country: the National League for Nursing and the American Nurses Association (ANA). The league accwdits the nation's nursing colleges and actkety pt-smotes TT tl~rsughbooks and videotapes, The 12N.A holds TT workshops at its national conventions, white the North American Nursing Diagnosis Association, a divisitsn of the AXA, explicitly recognizes "energy field disturbance" as a diagnosis-and the prescribed treatment is TT.2 Tr-rdeed, the t~f6cialplabfici3tiol-r of the ANA ran an article about 'iheding touch" with the teaser; "rl'kke a claser look at one of thc 'ecnergetic' therapies. tt just miglat recharge your pr-n~tice,'~ TT has been the sexFecl of numerous dacttjral dissertations and master" theses wri.t-ten by advanced degree nurses," To stay updated, nurses can earn a continuing education certificate in 'f'"I'through the A111erican Hotistic Nurses' Association, and prxctitioners can Eodlow the "Standards o";C:are and Scope uf Practice far PTlaeraperttic Ilbuch" aand ""Poicy and Procedujre for dXea1tP1 ProfessioxoaIs" "Wished by the Nurse fiealer-S-Professio~~aX Asscrciates International.5 In 3 9% tthe ANA annual convention in San Antsnic~offered not only the. traditional continuing edrrcatianl tracks but a ""hid ilzg arts" track, which explored energy fields and TT and included the seminar "Crones, Nurses and Witd'hes)'6 AS the Colorado Board of Nursing has stated, "TT is completely within the mainstream QC moderr1 nursing practicef7 lllow can this be? Part of the ansru.c.reris that these nurses share their fervor far 'l'T with millions of other ilmcricans who swear by tlrrprovell or discredited treatrrlerlt techniques. Rut their TT carnyaign is also fu-

eled by something else: a fiery resexzt~nerato f the medicai establishment, the so-called male medical elite.VTheir antipathy represents a thoroughly postmodcrn rejection 01: the prcvaiiting medical cuiture wherein doctors direct the patient" treatalent and nurses carry out many of those directives. Here we see, oncc again, the draina of the dorninant ovcr the disenfranchised. To stake out their own expertise in protest over physicians' "priviXeged'btatrts and vast store of technical knowledge, postmodern nurses have decided to champion non-Western healing tcchniqucs, like 71°K Tbcy have assailed researchers who questim 'IT'Seffectiveness, accusing them of simply wanting to preserve control over medical practice in general, and aver the predomir~andyfemale nursing professim in particulill: In their journals, K nurses challenzge the very idea that medical knowledge should be obtained in an unbiased, repeatable and cantroticd fdsl~ictn, As WC will see, these power struggles over tkerapeutic techniques and the conduct of clinical research are unhealthy for both patients and the nursing profession alike,

April Fools On April 1, 1998, the nurses' good vibrations about TT were perturbed. The burnat of the Alnerit-an Medical Association published a paper demonstrating, quite li.tcrally>that 'I"?' is such quackcry that even a child can debunk it."The stlxcly undercut the idea behind TrI;'by showing that its own pracdtioners could not reliably detect the prcsence uE a human cnergy field. The authors rctruitcd t\venty-one TT practitioners and askcd them to perceive the hurnan erlergy fieid by putting their hatlds, palms up, through two cutours at the base o f a screen, On the other side of the scRrsz, o b s i ~ r ~kom d the praititsoner's vkw3w ~ sthe examine&who hdd her right hand, palm down, about four inches above one of the practitioner" hands. Each practitioner undewent ten trials in which she was askcd to detect whether the exrtmia~cishand was positioned a b o x her left or right hand. The r"c"sult?The practitioners were no morc likely to be correct than if they had simply guessed.

One of the pq3er2 authors was nine-year-old Em2y b s a of Loveland, Colorado. She had devised the experir-nenzt for her fc~usth-gradescience fair, The nowlty of a child exposing a popular alternative therapy became a media sensation. Emily and her project got front-page coverage in the N@wX ~ r kTiwre7s and the Los A~gelesTinres. She m s fcatured in Time and Pec~plemag~zinesand 3ppcarc.d on NBCysToday Sholv, Ir is not difficult to imagine the reaction of the alternative rrledicine community*Susan B,ColXins of the Axnerlcan Holistic Nurses Association said that she cared "very little whether a practitioner can feel energetic cxchange in ;a contrived situation . . . whexl 1 see o ~ t c o m e sthat the 'TT process as a whole works."'0 Mary Ireland of the Rutgers College of Nursing ctismissed the experiment as unrealistic because, among other rklings, "it glosse[dj over the fact that practitio~~ers generally use both hands to assess the Human Energy Field."ll (:ynthia Ilutchinson, a TT instructor in Boulder, Colorado, with a doctorate in nursing, told the Los ~lrlgelerTimes that JAiM14 itself was co~nylicitbecause "it is a political orpanization and many physicians . . . feci threatened by human aura therapy because it Incans that their poMrer and money are being takcn waym''" On lntcrnct b~atletinboards nllrses scoffed at the work of a nixle-year-old-nevcr mind that the payer was stringently peer-reviewed, not by other nineyear-utds but by medical experts*! Even Dr. Andrew F+ki19the alternative tnedicine guru, weighed in. "I don't buy [Emily Rosa's] tindings:' 11e wrote in his "Ask Dr. \Veiln online column. "There is too much evidence that healing energy systelns work in cultures throughout the world, in a variety of forrns:""ndeed, TT has mulccultural appeal. According to tlie textbook Nursing Dicigrzosb: Application to Clinical IJmctire, 'TI. helps us "celebrate the diversity alnong us, . . . Be~%use of our kjiestern culture orie~~tation, we search for research to explain its effects. The Eastern mind dcresrr't care haw it works, only that it docse5'I5This is not so, of course, The practical \"Vestem znind happily explaits therapies that are effective even if it doesn't tunclerstand why. In fact, many mainstream therapies-lithium hr manic-depression, morplline for pain, aspr-rin for stroke prevention-wcrc used for years hefare anyone knew precisely how they worked, The problem with 'Tr' advocates i s that SO marly of them resist demands to pmw that their therapy works tlr aiL

Emily RosaS articIe in 1;"1iv~was 4 a surgical strike against a mowlnent that has gained impressive momentum. Accorditrg to the National Council for Reliable Health Information, tkerc are approximately fifty tholasand practitioners o f TT in this country todagi'h 'Therapeez~ictouch is offered in a t least two hulldred hospitals, including Columbia Prrsbyterian Hospital in New York City and Georgetown Medical Center in TYI.fiashingtorr,D C e More than eighty lrsliversiq nursing colleges in North America reach TT elective courses. Most of the major hospitals of Denwr and Rodder s&r TT to patients. The Swedish Hospital in Denvcr even has a special ""Department o f Eneru" (as in psychic energy), TT has also attracted Ecderal tax money, "The Division of Narrsing of the Department of Health and Xjtmlan Services gme a S200,OOQ grant to D'Yottv21c Nursing Cenler in Buffalo, Mew York, to tmin student nxrrses in the technique, h tn d thc University of iriabama at Birmingham received $355,080kom the Department of Defense to study the use of TT to promote healing and pain relief in burn patients. The National Center for Nursing Research and the Office of Alternative Medicine, both at the National Institutes of Health, h e l v e ma& grants as .1vel1.17 What does 'TrI' louk like? A typical TT sessiola lasts between ten and thirty n~inutcs;it is performed by a practitiutrer who first must hc "ccntex-ed"-a state of mind ackievc?blethrough meditation. She scans the patient with hovering hands, searching for imbalances in the energy field, claiming h, feel through her hallds a sensation of tingling, throbbing or heat ~ivhenthey pass over aRas of pain, inflammatior.1or tension. Then she sweeps her hands over the patient in order to distribute excess energy to areas of deficit. If the practitioner thinks she has picked up excess or negative C P I C she ~ ~literally ~ shakes it off k@r hands. According to: TT proponents, the technique can actuaily be dangerous if not performed properly;, As Dolares Krieger, the mather of TT, ivrites, "Human encrgks are not well unckcrstocnd at this time, but we do know that indiscriminate and g3ersisten.l:interaction can overload the human system; a healer can overdose on human energies."ls She also warns that if the healer is cmationally upser or physically ill, she can "transfer negative energy" to the patient, rnaking him sicker. Il'hile this is no Inore plausible than TT itsell.; if the practitioner beliews it? h e n she

shorlld inforn~the patient of this potential side effect. But mary do not; TT is often performed without cunsent on patients who arc asleep or in a coma, or on irrFants whose parcnts are unaware: that their child is being "treated*"

The Placebo Cure Given the enthusiasm oC TrT promoters and their confidence in the procedure, one might imagine that a few of them would have tried to win the $1 million "Paranormal Challenge." Thc magician Tames Randi ("Thc Amazir~gRandi'" 0oEfert.d the huge re-rvard to anyone w l ~ ocould detect the human energy field. As of February 2000, Mr. Randi told me, only one person has taken the challenge since the offer was put ssr the table in 1498, And she fai1~d.j~ No surprise. Human energy fields don? exist. But the humant conditia1-r does, Common sense tells us that a sick person who is frightened, lonely or borccl will. probabfg. feel a bit better after receiving attcntio13 from a caring, unhurried individual. Or perhaps the patient experiences a "placebo effect": the illusion of having received an effective therapy. Generally we. thinlfc of placebos as inactive (""sitgarn")ills, but: they can also take the form of hand-waving. Reseach routinely shows that between 35 artd 75 a^tercentof patients elrperience relief if they "olievcr t h y have been given an effective therapy for pain or anxiety. Thus, experimenters typically use a placebo in their research design so that they can be more confident that the effects of the new therapy they are testing exceed the ""beafi e'hssocittted witlt placebo, The promise of' relief can be pewerlul, Sornetirnrs even physical symptoms, not just subjective complaints like pain, nausea or mcbnd, can improve after a patient receives a placebo. For exitmple, the symptoms of full-blown heroin withdrawaldiarrhea, sweating, vomiting-can be re-\rersed in some addicts simply hy adrnjrtistering an injection of inert s~xlifrc: that they bciicve. to be morphine. In surgery as iveX1, patients ha= =port& mdd impri)vemeur~of some ileumlogical illnesses with. placebo, or '%sham," surgery in which the physician goes through all the preparations for

surgery, including making the hitial incisions in the skin, bile does not actually operate sn the brain. Keep in mind, of coursc, that experimenters who have fi~ithin the treatment they are testing can be as suggestible as the patients who want it to work. This means that both must be "blind" to whether the patient received the red or the sham therapy, An experimenter who knows which patients received the actual medication, for example, may inadvertently give thcm subtle hints about her confidence in the drug or her exgecfation that they will feel better. Even the surgeon performing a sham operation does not know whether she will perform the real surgery or sinrply make the skin incisions until she is in the operating room with the patient anestbetized, It is very likely that T'T recipients who feel "utter afterward are simply expriencing thc time-honored placebo effect. This effect has rightly been called a window into the mind-body connection, hut it is by no rneans a illagical pheno131enon. In fact, any number of not-so-mysterious processes can expiain why some patients ayel-ience relief after taking a dummy piU. Soaletimes it is as simple as self-&aption. A colleague of mine had a dramatic encounter with this, One sf his patients w i ~ hbreast cancer had undergone a double mastectomy and chemotherapy but her turnor returned, spreading to her chest walf, ~vhere it created obvious bumps under her skin. In desperation, she went to an offshore clinic for vitamin therapy and upon returning from the clinic a few weeks later saw my eallcague again, She was a new woman, he said, buoyant, thrilled at her medical progress. ",l.ly turnors have disappeared," she told bi~n,""liook h r yr~ursell-:"But 1vhc.n he unwrapped the bandages on hcr chest, he saw that not only t"vrercthe tumorous tzoduics still present, but they had become ixafected ax-tcl were Iiterafly crk~wlingwith maggots. The won2an died a weck htervz0 If some pcapfe can fool themselves about rcmissiuxt of major diseases, in~aginethe possibifities for perce3ving that minor ailments have din2inished. Placebo effects do not always represent self-deception, of course, Sometimes impravemerat i s real, xxlosa likely owing to the comp2cx rela-

tionship between mentat state and the immune, cardiovascular and hormonal systems. This is why many researchers agrce on the need for investigations into the placebo effect itsdf? its duration, the conditions under which i t seems to manikst and the ethics o f its application. Through such work we Inay learn n ~ o r eabout the p~yfksltogy~ physiology and control of pain. Until wc know more, it is reasonable to tl~corize that a patient who is reassured by the practitioner and confident of feeling better rnay undergo some physiological changes, such as endorphin release, heart-rate dcctine and lom~crlevels of stress horrnoncs tikc corticsstereid, How long these physiological changes last and l ~ o wdramatic they are vary from person to person. Mehough {hey rarely alter the course of much of the benign effects associakd with serious illness, they can ex~?lairz placebo, Cnnverscly, placebos can also produce ill effects (the so-called nocebo effect-).!b%en patients are told that they y n q experience amvying side effects Like tingling, rlausea or headache after taking a pill, many will indeed report such symptoms, Presumably the body produces these syimptms in ~ s g o n s cto suggestion, even though it was a dummy pill that was taken.

What is wrong with indulging our iascination with the lnpstical and occukl ''his is a question asked by Dr. Marcia Angell in her 1496 book Sctetrce on Dial: TIac Clash $Medical Evidcncc and tire Law in the B m s t Implant d"la-;t*. Nothing . . . L I I I C ~ ~we smart deceiving oursclvcs. The '"disdain for sciexlce has vast irrzplicaticrns lirr L31~lrvwe C O I B ~to know the truth about the human bctdy>'Xngell writes, The topic of her boolc is silicone bgcast implant litigation (a saga of lawyers and patients ilaimirzg in1ylan.t-induced illness where science could find none), but her rnessage applies to altemativc medicine (a saga of practitioners and patients claiming heaiing-frc~m, say, TT-where there really isn't any). As the physicist Robert Park sums it up: "Altcrnatirsfeseems ts define a culture rather than a field of medicine--& culture that is not scientifically demanding."21

Nonetheless, a1tcrnatik.e medicine is popular, According to the dircctar of the Ccnkr for Colmpferunentaryand ALternatiw Medicine at NI tI, 42 pmrcc~ltof ail Americans used snc or more alternative treatments in 1997, up kom one-thrd in 1991,'VThis is ur-tderstarrdable. Alternative practitioners arc kn(3w1.1for sper-rdingmore time with patients than mainstream doctors. Moreover, many of the irztcrw~aticsnsappear effective---I say "vpear" because, in Inany instances, either the problenl would have gone awoly 011 its own or it may h a w responded to the placebo effect, Lastly, some people turn to alternative agyraaches when mainstream who is enmedicine has run out of answers, The clinic of a practitis~~cr thusiastic about his treatments, gencrsus with his time and full of promises about rclief or even cure can secsn an irresistibk oasis of hope. The downside, however, can be devastating. As the anthropologist and physician Melvin Konner writes: "Some take herbs with serious but corn-prctely tlnstltdied advcrsc effects. Some empty their bank accounts and give up their last months with their families to travel from one healer to the next, trying untested therapies and changing their faiths like cwercoats in an cffort to knd off pain and f~al-,"".~ Despite these danger indeed, because of these dangers-doctors must keep up with the u n c o l l v e ~ ~ t therapies in their patients may be using. It is crucial flur physicians and advanccci practice nurses to be farnifiar wit11 the range of herbs, natural h o d store items, Eastern inferventions like acupuncture and SQ on. D i l c t ~ r sshould he prepared to answer iluestiuns /"Does Saint-John's-wor~really help with dcpressio~~?") and know which rlovel theragies are showing prcrn3ise in well-designed clinical trials. They should know the risks involved in fad diets and which alternative treatments can be dangen~usif combined \.;ith con'irentional medical trratment. 'T'hey should be ready to aprevent needless tragedies that can arise when sick people waste tin~eon fad therapies b e f ~ ~turnre ing to co~lvcntllonattreatment, or when they subslitute an alternative treatment altogether, Most medical schools now offer instruction in alterlaative n~cdicil~e, either full courses or a series of lccrures. But teaching about alternative rnedicine should not be a license to advocate for it uncriticaily. According

to a revie\v in Acadelnic hledickne by Dr. Wallace Sa~r~pson of the Stanford University School of Medicine, a worrisome fraction of the course instructors are quite partisan about afternative medicine, extolling its v i r ~ c despite s lack of data,'"%ihen Sampson asked about their teaching philosophy, a nutnbcr of course directors had some pretty shaky responses. The one who exposed students to past lives therapy (a form of "therapy" that helps you discover who you were in, sa): the Middle Ages) did so in order "10 open the door of possibilitys"B h e r s spoke of not being 'ijudgmerutaI" "'We believe in the First Arnendmcnt," said one dircctar), "Healing is about love:" said a course description. The University of Chicago, by contrast, is approaching alternative medicine responsibly k c e n d y the rrniversity3smedical school received a $5 miftiorr grant front the 'Fang Foundation to study the effecb of Chirrese herbs that have been used far centuries in the East and arc gaining popularity in the United States. "The most important thillg is to make ctiscoveries," said Professor Shutsung I h o , a biochemist who will oversee the research." k~deed,discowry, nut dogmarrc faith in unproven methods, is how rnedicai schools and nursing schools should approach the subject of aitrrgrnative arredicine,

Florence Nigh tingale Meets Gloria Stcinem "Tosonue extent, nrarses' ef-hrts to set themselves apart fmm 1nainstrca1-n medicine by practicing and extolling TT reflect a jockeying for turf that occurs regularly ke~ee1.lrclated professions, Nurse aneshetists, Ear exampie, have tried far jrcars to loc~senthe reyuiement that ancsthesialogists suyelvise thenr; nurse practiticrllers and physicians have tussled over the extent of the fc~mcr'sauthority m prescribe drugs.26 But feminism has imbued some nurses with an ideofogicaf zeal that goes fdr beyond guild issues, "Jhbmen ntlrses are women finit,'? kvrli-es the nurse Jo Ann Ashley in her article "Power Is Structured hjisogyn):" wllich appeared in the journal Aharaces in Ararsing Sciences. Instead of complementing the doctor's traditional "curing" role with their traditional "caring" role, some nurses are pitting care against cure," They bristle at the

Florence Nightixlgalc isnage of the nurse as a wsnzan obedient to the doctor---his "handmaiden:' as Nightingale put it. Postmodern nurses would rather fly the banner of viceimbuod rmfuried in the l 970s by feminists Iike Barbara Ehrenreich and Deirdre English, wrote in their pamphlet I/Vitc/tes, hfkdwives nd Narses: Our oppression as wonlen health workers tc?rdayis inextricably linked to our c~ppressictnas cvomerr. Kursing, our predominant role in the health s)rp;tcn~~, is siizliyly a workplace extension. of arzr rdes as ~iiif&" and mcirther. Tbe ntirse is socialized to believe that rebellion violates x-nnt only her "professionalism," but her very fe~mininity.This Incans the male medicdt elite hds a very sg~ccialslake in tllic maintenance of sexism in the society at: large: L3uctors are the bosses in an illidustry where the workers are primarily women, . . . Fake away sexism and YULXtake away ~3neof' the rx~ains"iysof tX~chealth hierarchy.2"

Kahryn A. Ballou, a clinical instructor in nursing at thc U n k r s i t y o f Missat~rif and yracticing indoctrinolugist), firids herself immersed in nursing's struggle for recognition and autonomy. If nurses truly wish to advance 'bur prokssicsnal power base; she exchints, they w i l nccd to liberate thernselws from the confines of the sxtedicltl prokssion. "Imitation of an oppressor group such as rr2edicine will only keep us oppressed:"alIOU contends. "Otherwise we will lnost assuredly continue to feel unapprecia ted and ~ ~ o ~ v e r l e s s ~ " ~ ~ Adetine R, Falk Rake1 o f the University of Colorado School of Nursing complains that simply being female has consigned women to the nursing profession. Femixzislity has y ~ p a r e dwomen to be dominate4 she contends, making them submissib~e,helipless, dependent, rs-t~rturingand altmistic., "'Even today: Rafael bments, "ntarsesYlanguage suggests [that1 deference is still required of nurscs as they follow 'orders' that physicians write:'3" In describing the nurse-physician relationship, a Canadiall nurse named A, J, Barrmgart says that nurses, like women cwrpilere, are denied ""rightful k~lowerstatus," In a patriarchal syste~ax~ as Baumgart descrrbes it, the nurse ""should nut know" hclsause knowled# is the province sf the (mate) physician.-"l

inll this talk of oppression ignores the remarkable progress wasnren have madc in medicine. WirFn women accountil~gfar about 11dE of a51 health administrators and aElxzczsr ha16 of all medical st-udcaats, the riledicat establishment is no longer overwhelmingb male, Nurses can lzow tn.3in.l for jt~bswith considerable clinical responsibility, like advanced practice nursing, with a salary range uf $55,800 to 75,080 per year, depending on experience and locatian, An a d v a n ~ dpractice nurse caxr prescrilltc many types of medications and order and interpret laboratory tests, Nursc midwives can deliver babies. Nurses in neonatal, coronary and surgical intensive-care t t l l i t s track vital signs, clean arad monitor invasive catheters, evaluate heart monitor readouts and rnanagc fragile metalPolic states, Nursing has come a very long way since the days of Florence Nightingale.

Women's Studies Goes t o Nursing School Xamdoctrinologist:onurses have wtaliated against doctors' alleged l~ronopoly on clinical knowledge isy creating their own literaturee fr contains h e a v doses of polclnic and social criticism, as exemplified by the work of Jean WFabr>n,a prokssur in the L'niversiy af Csturadu Shoo1 uf Nursing arid hrmer p ~ s i d e n ot f the National Leaguc of Nursing, As btTatsonwrites in t l x Akrsing Scier:.t.rceQunvfeib: &"ostrrroderndirections are already evident in zltirsirrg science knowledge and contemporary nursing theories, . . . This shift in extdnt nursin~gscience and kmc~wltdgen~atrixis reflcctcd in such shared mncepts as ec~ii-utioncbf coa~scicbrrsness,self-trax~scer-fciet~ce, open systenl, harmony, relativity of space-time, patterning, and holism, . . . In sun-zweary*as ntrrsing locdtes itself within tXse post~r~odern conditiasn of complexity, with its shadow anci light side, and as nursing seeks a d~vellir~g place whiclr i s open-ended, ambiguous, ilyxlamically constructed, incessantly qucstioz-fed, endle$sfy self--revising,rlever set, but floatillg and anclving with the river of Life, will nurses be part of helping nursing to nnatul-c and grow up both om1to2ogicaly and eyistemoEogicdX1y, witX1i1-z i t s m J n transforxnaticie praxis paradign1?32

Conhsedl Caratsctn's paper calls to lxlind the 1996 AIan Sokal affair, Sokal was a physics professor who published a payer in Social Textj an influential academic journal of cultural studies, in which he argued absurdly that gravity is a social construct with no objective reality. But while Scrkal's paper was a brilliant hoax, Wtson means for hers to be taken seriously. And her work is nut unusual, Publications such as the f i t r r ~ ~ ac?fTr~nsctrlk turn/ Nirr~ing~ AArivanca in Nursing Science, the Jo~lrnnlof Ntvrsing Educnriun and Zviuniig iirrquiry are b r h m i n g with incomg?rehensiE11e sel~tcnccs that create thc illusion of scholarship: From "Nursing the Pastmodern Body" in inVunirig Ivrquirp,: 'Tk7sixlg taueh as a medillin1 for ext~loriragthe ways in ~rhichit is constrrrctcd by nurses, the body is here characterized by a plethora of conmpeti~~g and co-existing terms: disobedient, obedient, mirroring, stigmatized, sinful, post-mortem . . . dominant, dominating, deceitful, disciplined, postmodern and corn131unicativc.?'33 R

From "Global Migration and EIealth: Ecofeminist Perspectives" in ildvarzca In Mirsiytg Science: '' [ Ecofemirtism is] the parallel oppression and domination of women and nature originating from a single logic of dominations"-"" From "thderstanding \Nomen's Risk of ISIV Infection in Through Critical Hcrmencutics" in indwnces irz Thaila~~d Nuasit3g Science: "!Women's oppression in 'Thailand is discussed as a position made af the moral imperative to use co~~nterkcgen~oaic methodologies in the study of W\; risk and prevention.'"""

a

From "Correlates of Prejudice in Nursing Students" in the Jotlrutal ~f Nursing Edacntio~:"k1ost health wcsrkcrs are socialized in the "equal treatment' modef, that all patkntsiclienbs should be trcatcd exactly the same. This equal treatment modcl emerges from a Ewrocen tric, lnictdle class persyec tive and often takes a paternalistic, patronizing view of the diverse patientlclient as a child in need of protection and guidance:".""

Frurnr '21rayuir.yinto the Paranorma135irrNtkfiIng Science Qtrarieriy: "Research of the paranormal may provide the thco~ticalbase for the spontaneous remission o f cancer. It is feasible that the rhythmical watyesaf garancsr~nralmanikstatiol~ can participate in patterning blond pressurel heart rate, and the Rtaw of substances sucl-r as insulin. "Phis might Ecssen depcndel-rce upon external substances srlch as xnedication. Undoishtedly tlaerc would be great savings far r k health care systen~and Inany drug companies might go bankrupt."'7 The health journaXist Sarah CZazer has waded through the poststructural llursi~lg~larriativesand obserws: "bor these nurses, \%rardslike 'reality,* 'objectivity: 'evidence-based practice: 'quantitative research ,' and ewn "measurclment' have become code w o d s for all that is evil, patriarchal, and insensitive about rxlodern n"~cdicineand rxlodern sciencee3'j8 Sornetirnes nursing ""sclsolarsfaiy" lapses into New Age sentimentality. Consider this poem by a nurse midwife cited, approvingly, in the Ntdusit~gScielzce Quarterly: And WIFCIE It coftles d Y X U T ~ Z ~ I E ; " tltc placesztu

I'm snrtirfg the particles and ~ w v e in s the Tectrum of light Arzd when my work is finisher2 I go from the p l ~ c eof birtl~

1 tvalk out azrt~ssthe fields nfthc" pkarrets in& ;rhespaces bettveert

the fiirthest st~rs.39

Gait 1. Mitchell o f the Ur~ivclrsityof Toronto brushes aside the quest for scientilic cvidalcc, The ""pokssional nursing practice is a living, unfo'sfcling mutuiality of inter-subjective being with;""she says. " m a t , then, can come from research findings that are generalized from persons not ~ R S C I I in ~ the nurse-person pru~css?"~t~ Quite a bit, One need not be imn~ersedin the "nurse-person process" to generate irxzportant findings about nursing practice, fufie Sochalski of the Ccntcr b r Heajth Outcomes at the University of Pennsylvania School of Nursing is conducting research "that is giving us insight into scores of important issues, Bike the mlatlonsh-ip bebveen staffing patterns and patient c~mtcomc;how to prcdict which premature

babies are at. greatest risk; how hospitals can retain good nurses (answer: give them greater tneasures of autonomy); which pain guidelines are most effecthe and easiest for the nurse to fo:^OXli4w."diSochi%lskiand her collcageres at the University of J2enns)ilvania are by no nteans a vanishing species, but the thorough absence of rigorous a n d empirical analysis from much of the nursing literature has a l~umberof academic nurses rightly concerned, "1 find 1 reject over 90 percent of the manuscripts I arn sent as a peer reviewer far scholarly journals:%fax-k Avis of England$ School of Nursing at the University of Nottingham tells me. "l am also appalled by thc poor standards of reviewing amongft:my peers and hrsrrifred by the poor scholarship of some of the papers that d s get accepte&.""Z Little surprise, then, that nursing tvas the Iwest-rakdof the scvcnv-two scholarly subjects exarnined in the 1992 ltesearch Selectivity Exercise coaduaed by the Urmiversities Funding Gouncil of the trnited Ki13gdc31~,43 Lorraine N, Smith, a professor of nursing at ~ h Uniwrsiey c of Glasgow, cornpared three influential nllrsing journals to the British Medical foclrrlal. She h u n d that the studies pw2,lisficd in the nursing journals had much smaller sarrlplc sizes and were sometimes triissing vital information, such as whether satnples were raiadomly chosen or what kinds of statistical analyses were used. "Nursing research is in danger of being seen as possessing much rhetoric and little slpbstancc: Smith i%rrites.dd The problern is not lirnited to British nursing. Writes Susan R. Gortner, a professor of nursing at the University of California at San Francisco, ""E'mpiricism has been giwn short shrift in nursing? It has, she says, been "criticized for the very fcatures that have nladc it the mainstay of scientific work . . . precision, cautim, and skepticism about outcomes:'"" Barbara J, Drew, a coronary-care;.nurse in a Sari Francisco t-tospital,makes a ""pea not to devatue the biological sciences at a time when a niaiority of nurses are drawing heavily from biological knowledge to provide increasingly complex care'' to sicker patienb. She adds: "In recoiling from the male-dsmirrated, reductionist, disease-oriented bionlsdical model, riursing science has (perhaps unintentiona%l-gi)narrowed its scope primarily to study the social and bchi3vioral sciences."""> Postmodernism may be a harmless approach to literary criticism, but in rnedicine the stakes are ~nuchIrtigk-rer. A health professionat who

brir~gsthe concept of relati*ristn ta her work is a frightening prospeck If she does not see the imporrance of making judgments about and clistinceions bet'~veentreatments, she wi!l lead patients to make bad decisionssay, chuvsirlg a homeopathic rexnedy ibasically water) over racliadon ar chelnotherapy for a treatable cancer. "This is not the Enlightenment triumph of autonomous persons resolving problems using 05ectivc standards of evidence, reason, and logic:' cconterrds Dolral O%fathktna of the Mount Carrnel College ctf Nursing. ""El is the p o s t m o k m triun?pl.r of individuals creating their own truths because no objective truth cxists."47

I-Iew is PC nursing manifested in tile real world? Ask KeGn Cstlrce.):. a nursc at Sacred Heart Medical Center in Eugenc, Oregon, h April 2998, Csurccg. ~ v a sone of millions to read about Emdy Rosa's aperiment in the local paper. Iie was elated: "Finally someone had figured out how to call the bluff of TT practitiaacrs:""" The ncxt week a colleague of C;atrl-cey's who is a stlrgical nurse told him of a strange experience, The nerrse, who has asked me to call her "Helen" for fear of losing 11cr job at Sacred Heart if identified, had been attending a postoperative patient. She left the room for a rnolnent to get some yain medication. When she returned, another hospital staff member was at the bedside and told Helen that she ""could help take away the patient's yain with therapeutic touch" and that no medication was needed, He1ell watched as her colleague p r ~ e d e to d wave her hands over the patient as though capturing the pain with her hands and shaking it off at tl.lc fcjot uf the bed. After a few minutes the patient said that her pain had irrdeed diminished. Distracted by llze diamaic, sweeping gestures, thc yatieat did not notice, until ticlen pointed itout, that she bad just bee11 given IV pain medication, ""Iwl-rs cus~cerl~ed that if the pashe wc~alfdhave attient hadn't been irlformed ail>olztthe pair1 ~~ledicatisn, tributed her relief to the magical arm-waving,"' Hclen says, ""Jelt this would have constituted fraudulent medical practice." Later that week Caurcey noticed that Sacred Heart was offering two TT courses for stag nurses, one for beginners and onc for those who

had been pracl-icing for at least six nzoxrths and who "felt ready to deepen their ser-rsitivitiesand aLvi3rencss of their practict.'Wt~y~ he wondercd, was a modern hospital nut only permitting worthless therapy but also training even xnore nurses to d s it? Perturbed, Caurcey took these questions to the medical chief of staff at Sacrcd Heart, The chief c x pxssed concern, but nothing happened, 24s snrrrses, we are held responsibiie by the state Nurse Practice Act to protect patients and report malpractice," Csurcey tells me, TT, he says, is "hmalpracticc:3ncleed, the ANA ""6odc far N-canes" Gates that ""t~cnurse participates in the ymfession's efforts to protect the puilrlic from m i s i n f a o and misrepresen tatioy~,?'~lY The Questionable Nursing Practices 'Task Force of the National Council for Iceliable Health fnforrniation krleps track uf such nt~rsingmisadventures.""" $ere are some cases frorn its files: A man in much pain was a s k d by a nurse whether. he would

"Eke same llelp with relaxation techniques.'~fmstljadof reporting the unusual amount of pain to the physician, the nurse sent in an aide to do ""healing touch." W ~ c nhe SLTWher waving her hands over him, he thought he was getting his last rites and became panicked, In anaher case, a patient was ss startled by the hand-waving of a TT practitioner that he fell out of bed and broke his arm. ia woman with abdominal pain went to a TT' nurse W B I ~ had a

private practice. The nurse recommended TT treatments only, and the Nrornan died of complications froln a ruptured appendix a few days later, A wonx2an who called her H M 0 nurse on-call when she developed severe abdsn3inal pain was ttttd Ilaat she should use the pain to get in touch with her inner setf. Nothing else. The woman went to an emergency mom, where she was found to h a w a pelvic mass, later determined to be a large ovarian tunlar,

Same nurses =port being pressurd to perfornr TT. When Elaine Bishop, an oncslagy nursc, was instructed ta participate in TT training by nurskg admkiritration at a hospital in Grand Rapids, Micigan, sl-rc cumplainecl: to an internal x v k w committee of doctors and gat T'T banned from her hospital, "*'Thedoctc~rsw r e easy to cc?win~ce,"Bishop xcalfs, "but the chief of nursing was a n ~ h e sr t o y She wasn? pptcascd, to say the l~ast*"~I Sharon Fish, a community health nurse, found TT spiritually offensive. According to Fish, Christians earlnot engage in TT without cornprolnising their iaith. As she rcminds her colleagues, "[God] alone can teach d ~ true e meaning of rhs: laying on of klands to coinfort, care and c_-ur;e,"5" Wrse, fbr Fish, is that the neol3agan Wiccan religion promotes a variant of 'TT-one major- difference being that thc FViccan healer is nude when she n~anipulateslife farces, Prompted by complaints from nurses who felt that their religious con.i~ictionswere violated by hospital-sanctioned 'TT9 the Equal Employment Opgartrulity Commission declared in 1488 that health care: exnlployees cannot be required to learn ur practice TT?

An Antiscience Agenda 'InJhat ?"I" advoc~ltcslack in fdmilir-~rity with scicrstifie methocl they m a k up for in political savvy, as this story from the University of Colorado shows, In 1994 a group of Colorado residents protested the use of taxpayer money to teach TT"at the University of Colorado's Ceater for Humcm Caring. The university convened a panel of in-house and invited faculty members to review the scientific evidence for 16'1: Henry C:liiman, a professor of medicine and immunslogy at the university's rnedical sehuol, led the panel, which fcjund no evidence confirnling TT's usefulness.'" Claman, a strong supporter of research, suggested to the nurses that they collaborate with energy scientists in the university's engineering department to study the hypothesized mechanism of TT. His offer Mrent ignomd, and in the end the nurses prevailed. Remarkalrljr, the university turned the issue into a matter of academic h eedo~n~ ""'f"heuniversity officials believed that removing the subject from the curriculum would vio-

late the academic freedarm of the nursing school:XGlaman has explained to rne.55 "There was no question that [the nurses] had an anti-male and anti-h1.D- agenda:' he said to Gina KoDiata of the Nr?w York Tinges,"but they cleverly turned it into an issue of acadeiraic rights."56 The University of Texas School of Nursing is another institutiur~that exercises its freedom to inisliead students. The school" 1998-99 continuing education series for nurses, which was approved by the Texas State Board of Nursing and the American Nurses CrrdcntiaZil~gC3enkr Cammission on Accreditation, includes such Ncw Age offerillgs as "Using Energy to Enhance Nt~rsingPractice: Use of CoXor, Music, rFouch and Movement:' "Holistic Nursing: Strategies That Transfor~nand Hcal:' "homatherapy for Nursia~gPractice,"' "Reflexolcrgy: Stimulating Hek~ling in the Body:' "Spirituality in Nursing" and "Using the Polver of Our Thoughts for Healing:' Courses in herbal medicine and homeopathy are offered side by side with staples likc poison control and yharmacology.'i These courses hardly seem consistent with the rnission of the nursing school's continuing education department: to ""harness the tcchx~ological advances of the information age and help tomorrow's practicing nurses stay ahead," "ftepbcn Barrett, a retired psychiatrist who is now a full-time chronieltr of medical hds, is bemused, ""fstearci c3f creating an authentic psvgraln to ea~hancenurses as prokssionats, tkey are sdfing an arrtitechnology, antiscience, antidoctor agenda," he says,38 The hiversity of %xas Skepticral Society was dscs appalled at the direction the curriculum was caking, Ruahn M,PVynar, a graduate student in physics and society member, wrote a letter from the society in the spring of 1998 to all nursing sc110ol faculty members: "Help us [get] the Texas State Board of Nursing to get TT de-certified for continuing education credit:' the letter said. T h e researcher inside yott must understand the silliness of TT as taught at UTSON. Why let this go on? Can we trust the war&:done at. a school, that cotlccts lnol~cyIbr y uackeary?"sg 14[ynar was referring to the fee that nurses must pay to take continuing educatio~l courses. According to Wynar, everycbni: right on up to the university p m ~ o s and t the nursing school crcdentialing authority rcsycrndcd to this appeal by saying "everything was okay."

Starched C a p Blues

Coxlditaons across the Atfarltic provide an intrigui~jgparsilei to develcsy~ n s n t here. s Tlqlrf?~ years ago British nlurscs were exj~ectedto obser'cre rules of silcncc, ritual and courtrsj~Tfhey were barred f r m getting married while in training, personal jcwelry was bmned and hair could not be lollger than shcruEdcr-length. Nurses were supervised by a strict ward maImn 'i.vhO handed doivn orders. "l don't thj;nk B ~ ~ O would X ~ C Eke to see a corrzplete return to the way things were,'"writes Minette Marriri, tz L O ; P E ~ O ~ Rlegruph columnist, "the ferocious matrons, the virginal seclusion of nurses' [dormitcarics],extrcme dcfcrcnie to doctors . . . the starched cap:" But, she says, British nrrrsirtg has ncsw embraced the opposite Other rvriters agree. In their essay "Extinguishing the Lamp:' Janet Warren and Myles Harris note that "the nursing profession in England became stridently sombati\re, "rights based' and feminist. Mirrslng began to be billed as a wider struggle fur better consimmer rights, equality for minorities, "gas,' any group which could be used as a means of cmrting leverage for rnore pay and a 'better' image."hJ By 1995 all the traditional nursing scfiot>lshad closed. Nursing training was expanded to include mciofogy3politics and race and gender awrarcncss,Patient care suffered. The Telegraph's Marrin cites the opinion of one National League of Nursing Inanager: p u n 8 nurses, who often begin their careers unable to insert a catheter or to take blood prcssurc, arc now ""aiiabiiity on the wards? Part of the problem is Fmancial,'""l;ere is no doubt that man): hcaith managers would much prefer to see fewer exyensiveiy-trained nurses and fir larger numbers of unskilled workers in the health service: "tYarren and lcliies write. Thus, two trends-government efforts to cut costs and nurscskfforts to break out of the traditional nurse-doctor relationshiphave combined to estrange nurses from tl-re bedside, Unfortunately, patients tend to suffer when competent nurses are rernoved from the front lines o f clinical work and the basics of practical nursing are left to ctrderlies and superficially. trained health workers, England now has a rnajor crisis in nursing ~ c r u i t m c n t From . l987 until 1994 the number of young women entering training fell 39 percent. The educational yuaiity of apfillicants Imas also deteriorated, and dropout

rates from ntzrsing school are cstilnated a t 15 to 28 percent over the course of the standard three-year training period, According to the Department of Education, some nurses arc ss weak in mathematics that they have difficulty calculating safe drug dosages"62 According to joflrz Clare, education editor of the Telegraph, the literacy and numeracy skills of half of all British aclralts arc so poor that they cannot cope with the demands of everyday life. Clare singles out nurses in his otherwise general report of a reccndy ~rleasedEuropean srrrwy on Xiteracy: "Nurses could be putting patients' livcs at risk because poor standoses, it has been claimed, dards in nzaths may lead to errors iar caXculati~?ig A meeting of the [nursing] profession's regulatory body, the United Kingdom (2entral Cot~ncilfar Nursing, was told that maths was a general weakness in xzu rsing educa tiuni""" The situation in this cobznztry is nut so dire, though it is worserrirtg, ?'hough the b i t c d States has more nurses in practice &an ever-about 2.1 million in 1996, the most recent year for which there are gokrernment figures--there is a growing shortage of hospital nurses.6W~ursi11gshortages pcr se are nothing new; they tcnd to occur in roughly ten-yar cycles, according tu Maryaan E Fralic, a prokssrsr at Johns k-fapkins Lmiversity School o f Nursing. For a number of reasons, howevel; this one is different, and FraXic worries wc may not be able to boul-~cehack as rclia"uly this tilne.65

Clne i ~ m g o r t adynamic ~ driving the currerzt shortage is the ytlsh tu save money on hospital casks, Inpatient stays are shortcsl; beds are clvsing and more care is being delivered outside of the hospital. One consequence is that nurses have other work opportunities, such as providing home health care or doing uti2iaation reviews for marmgcd care cmpanies. But d are being another result is that the nlrrses who stay In the h ~ ~ p i l asetting ~rorkc.dto rile bone. Marge Bradlcy o f Nortlm Haven, Connecticut, is s i n ply burned out: " h a w h a w to delegate moa tasks {of bedside care], . . . More time Is spent on the phone and at the corrlputers than in [patients'] roorns. I have never given worse care in my life. I am a darn good nurse and I will leave behrc: that changes*'l66 M'ith higher thresholds for hospitalizing patients, fewer llurses care b r sickcr patients. In 1999 California beca~nethe first state to mandate ra-

tios of nurses to paGents in response 143 concerns that nurses are stretched to the breaking point and padcnt care is at risk.67 Another reasoxt for declining cl~rolltmentsin nursing sci~oolsis that women have far wider career options than ever befox, both in ~nedicine and in other professions. Claire Fagin, a former dean of the University of hnr-tsylvania's nursing school, says the recreritmcnt prtablem wiU worsen "if women and men are encouraged to abandon caring roles in favor of more powerful and econo~nicallyrewarding roles:'h8 Also, during the ~ n i d1990s, when managed cart exploded, tf~crewas a general perception that staffing needs wortlcf,Pdvar unlicensed staff over n ~ ~expensive r e and highly trailled nurses. "It was discouraging to youl~gwomen and men considering a nursing carecl;"' Frailc said. ""'Theydicin" twant to go to nursing school if they had reason to think there would be fewer jobs for thein." According to the Aincrican Association of C;olleges of Nursing, the ntainber of enrollees in bachelor" sand ntasterk level nursiilg programs dropped 5.5 percent in 1998, the fourth straight decline. A spokeswoman far Samuel Merritt Nursing C:aliege in OaMand, California, told the J\~~I?I Erk-??rues in 7 999 that thc only way to keep college cnrallrner~tsteady was to accept Iess-qualified appticants.hyThu S, because o f declining cnrollmcnt, the agir-rgof the nzlrshg workfarce and the exodus from hospitat to no~?i-inpatientsettings, when experienced nurses retire from acute-care settings like emergency rcsonts, operating rsoms and intensive-care units, they arc not being replaced k s t enough. ff current trends continue, cstiimate Peter Buerhaus of the Vanderbdt Universily School of Nursing and his colleagues, the nursing workforce will decline nearly ?O percent below projected rcquiremcnts by the year 2020~7"

Nursing Shortage and Affirmalive Actiolz Compounding the nursing shortages is the problem of lowered acildernic standards in some nursing scbaols, Driwn partly by the desperate need to recruit more nursing students and by an enrbrace of affirmative action, many schools are graduating young trainees who are poorly prepared.

This trend could not come at a wswse time: wit11 hospitals admit-t-ingonly thc sickest p a t i c n ~nurses , must be astute enough and cool enough under pEssure to spot acute clinical changes and make quick decisions, Xm California especially, the nursing shortage and affirmati~reaction in nursing school admissions hmc csmbirted to worrisome effect, Beginning in 1995, according to the Los Arlgeles Tirrzes, state nursing programs offered by cornnlunity colleges have been mandated to adopt either "discrin~inatiun-proof"admission systems based on lotteries or first-camefirst-served waiting lists made up of students with at least a C average in prerequisite courses," Students with higher grades arc turmd away in order to cnsurc diversity The lack of selectivity has had alarming consequences. Some students are being held back because their acants are too heavy and can't be understood by patients. Several of the college instructors interviewed by the Los Angeles Tiylr~said that their students Tcvere stumped by the kind of single-variable algebra probleln used to calculate drug dosages. "They can't read at a high school Eevet . . . or they have undiagnosed learning disabilities:' said Sue Albcrt, interim dean of *4ntclopeValley (;allege. As a result of taltirrg any sttldevrt with a C minimum, dropout rates in Gajifornia sclmocbls have saarcsd. Bcfc~rethe new admissions policy, about S percent of students did not complete the two-ycar nursing program, Now rhad rate has doubled, and some schools have wached a rate of two dropouts for every five enrollees. Gradcs have dropped, scores o n the statewide nursing board exams have gone down as well and the number of students who need more than two F a r s to finish their coursewc3rl.ihas increased, )die I-lerda, a ycdiatric nurse practitioner in Orange C:oranty, was mowcl to speak about the e m i o n of standards: ""lindccd the California cammunity college syskm cannot admit potentrat nursing candidates based on academic perft3rmance (as is the standard for other professions), the education of registered nurses does not belong in that systen11*y272 In October 1999 a gruui3 of nursing iatstrrrctors called for a meeting with Tholnas Nussbaum, the c o r n u n i t y college chancellor, Hc decided to create a task force to develop lnore stringent nursing admission stan-

dards, hfcanxvh2e, most nursing yrograrns have been trying to repair the damage with intensive tutarrhg. Ir\ihile the 1995 ~nandatedid allow -for yrogt-ams to set their own admissioxlts standards, thc catch was rhat they lzad to show that tkaose standards would correlate with success, " ~ clate o only a handful of programs have undertaken these efforts. blary Parker, head of nursing at Ctaesta Cummralaity College in San Luis Oblspo, told the Los A~rgelesErnes that some students who were f-lunkingout had expressed ""sicidd" kelings in her office, Such desperate rcsponscs ~ V C ~not C the norm, but there is little question rhat many students we^ falsely promised a ctlailce at becolning a nurse. One wonders how quickly nursing education shndarcls will be restored with groups Like the National Organization of Nurse Practitioner Faculties bemoaning ""yower differentialt;,'?FIow can they be expected tu corlhont students about their deficiencies when they themselves seem so confused about the legitimacy of academic paternalism! "\Vhat are the power and status discrepancies that we must work with b e f m we can be effective teachers?'" tlae organization asks i t s mexnhers, xtoring that "studex~tsarc fearful rtf our p o w r to gradc,"'g'

Who's Watching the Morritor? ""Thcriigeutic touch and alternative rnedicine have q~readbecause a lot sf gooct nursing academics have said nothing:' says Linda Rosa, Emily Rosa's mother and liersdf a xaurse, It isn't safe to merely assume that common sense: wiU prevail, that the pustxnodernists will shrink in number and inflracl?ice.Dcrmbir~gdown the curriculum, teaching pseudo-science and promoting kel-good, tlinlproven rexx~ediesare deeply worrisotne trends. SQ is the flourishing of an orthodoxy that shuts out dissenting voiccs. Linda Rosa \vas told by a former ectitor of the ~ZmericunJownal of Nurrinfg, the oiffciail publication of the American Nurses Association, that be would not publish anything critical of TT because "it would confuse'3k rcaders.7" Responsible nurses owe it to their pn~fcssionand to their paticnts to protest, T h e y must not tolerate the viotatiorr of students' trust when they see a colleague teaching TT (ar homeopathy or crystal healing and so a n )

as a proven remedy2'"Kosa insists, Nursing schools, a~tlrsingjournals, the American Nurses Association and thc National League of Nursing should be taking 11142 lead in applying critical Judgment and scientific rigor and in rooting out the indoctrinsbfogists alnong them, As Lirrda Kusa s q s , "Patients shouldn't have to wonder whether sorneorle is watching their tnow itar or ~ y i n to g balance their energy fjeids."

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Sisterhood a n d Medicine

according tu Batricia frelax~d, president of the National Organization for jVomen (NOW), will be one ofthe mi:m.jorpolitical issues of the new mil[lennium.In the flrll of 1949 Ireland gathered on Capitof Ifill with Representative Mancy Pelosi, the C:alifesrrnia Denlacrat, and leaders cif the San Francisc*based Breast Can cer Ftmd and 0 t h ~~) ~ ~ V O Cgroups K ~ to announcc the fornation of the National Breast Cancer Ikrewtion Campaign.! "There are hundreds of synthetic chenlicals in breast milk," according to I ~ l a n d"Nre . are poisoning the earth, and women arc dyirrg because of it*"Arrdrea hilartin of the Breast Ca~lcerFund told the aaidience that rates of breast cancer are increasing. "We have a right to know what chemicals we arc carrying around in our breast:' she said. At the event, Ireland, Martin and the national campaign-which comprises about sixty women's and health advocacy organizations-den~ai~ded n2cprL. federal fk~ndingfor Rsearch into thc rote of a particular class o f synthetic chemicaIs callrd ""cdocrine disrupters," "~rlpposedly these cllenrlcals interfere with human hormones (specifically estrogens) to cause a range of defects. "The evidence-and our bodies-continue to pile up,'"claim the adv~cates,2 Now for the Ficts, First, the death rate frarn breast cancer has l-zeen declining sirlcc the mid-1 9861s, accordillg to the National Cancer Institute (NC:I),2 ?he i~~cidence is increasing only for the [lessadvanced stages of the diseitse,V'l'his srrggests that more lvametz are being screened and that cancer detection k i n c ~ a s i n gas the qualiv and availabiIity o f rnarnmcrgraphy

T

IIE ~ 0 x 1 6 OF 1 ~WOMEN'S ~ BREASTS,

improves. Inc~casedincidence neeci not mean1 that more new cases sf cancer arc cropping up. Thcre can he a higher incidence becausc cascs are: detected earlier and thus paticnts who are diagn~osirdarc staying alive-that3s good news, Second, the "en Jocrine disrupter" hy yothesis trumpeted in a 1996 best-seller, Our Stc~lenFuture, is scientifically bailkrugt.%cc:ording to the book, estrogen-like substances found in man-made materials from plastics to pesticides arc causing a host of problems, like infertijity and breast canccr in hrrinans and deformities in the sex organs of animals, k%%ilcit is true that exposure to high levets of estrogtn is a risk factor for breast and uterirle cancers, and also that some n~an-nlaclecl-rermicals have weak estrogen-like effects, thc authors of Orrr Srillerr F~zruretake a huge leap, They claim that these cherxlicals combine syrrergisticafiy to produce a poiverfwl estrogen-like effect that wreaks physiological havoc on our reproductive systems by disrupting tbc h~nciionof ular own naturally produced estrogen. So afarmed was Congress by this claim that in 1996 it required the Envirsnmcntai Protection Agencry (EPA) to develop testing and screening guidelines for endocrine disrupters. A closer look at the science, howe%rer;reveals n u m e r ~ u holes s 111 this tapestry of doom. First, there are naturally occwring estrogcnic compounds in fruits, nuts and wgetables that are fir more potent in their cstrogen-like effect than synthetic ehe~nicals,yet the forn~erare 110e considered risk Gictors for breast cancer, Second, the researchers at Tulane University who claimed in I996 to have measured a strong estrogen-mimicking effect from synthetic chemicals retracted their own data a year later because their results could not be r.eplicated,TThird, the environmenbl lcvels of lnost of the compounds suspected of being endocrine disrupters have decrt'ilsed over the last few decades as a conseyence of strict regulations regarding tf-seir usc and disposal," Researching preventable causes of breast cancer is logicad erzr~ckgh, but the National Breast Cancer Preventiazl Campaign" ppreoccugatlon with the role of man-made estrogenic chemicals in causing cancer is a trim p h of junk science-that is, the promulgation of a c a u s e - a n d - reIationship where none has beerr shuwar to exist, As knxrifer R. M y h of

the sociology department uf the Llniversity of Ckzlkfornia at 1F)ab.i~writes in the jnurnnl of the A~rerc-nr~ 1WebiictaE 5.%41nren% Associ6ltiolz: "Regadless of the scientific merit of the claims that environivlental p o l l ~ i c ~causes n breast can=& the grokvillg interest in environmental issues alllong breast callcer activists is sigllificant because it highlights the [breast cancer1 movement" stkrnyt to rclframe breast cancer as a social issue,"" Promoting women's "social issues" through pseudo-science does not help women. It cl-eates needless worry about health, takes wmen's focus away from actual risks and misdirects resources better spent on Inore promiskg avenues of research. Back iar the 1970s the landscape was different, American wolmen were more than ready for their own health movement, There was a growing intolerance of ""oiar xnotherk ggynecologist,""who often ptrsxssed a patronizing, tinere-there-it's-aIl-ix1-your-k2eadlittle-lady attitude. Women wanted control of their physiology beyond contraception, They wanteci more information, and they wanted doceors who let thern ask questions. The Beghimate concerns and can-do spirit of the 1970s welmen's hcalth movement haw given way to a campaign largely Euclcd by misplaced aggrievemcnt and misinformation. h4any advocates clalrn~rrsngly-that the medical estahlrshment is still run by men, that the research enterprise is denying women znedical breaktitroughs and that neither is paying serious attention to women's rr~edicalneeds.

I reccndy happcrzed upon an: hour-long special on PBS featuring Cbristiane Northrriy, a physician and author afthe best-sellilzg T~2,bonzen"sodies, T4brnenj.Wisdom: Crt.ating Physiull afzd Emotional I-leolth n ~ r dHmiirrg* Like the guru-doctors Deepak Chopra and A n d ~ wIYeil, who preceded her on public television as suk3jects of their own specials, Northrup spoke of ""chakrel encrgs' "deansing" mand ""iner guidance:'' Here is a smi11l samplc of what she preaches: Aggrcssivc bchavior can be associated with cancel:

An individual" sperccpfion of whether her body is permetrble to influences, either physical or emotional, is related to wrl~ethershe is suscepti"nle to cancer, m

An ~ ~ w r d e v e i ~ pwiU t ' d (owrasserti~~nesS) can result in hygcrthyraidisrrlt,

Blood clot formation Is related to stopping the Rcjw of i n t u i t k irrfclr~natisn,~ Northrc~pis rnore tharl just another New Age physician; she is an expert in ~r,~ornenS health, Strange, tincn, that some of the medical. wisdonl she dispenses is reminiscent of attitudes from one hu11dxd years ago, (I say "some" of her wisdorn kcalase Nortg;iruy3sd i ~ u s s i o nan the refatib~e safety uf breast i m p l a ~ sfor , exampe, is accurate, timely and thoughthl.) What the doctor is basically suggesting in ~nuchof her book souxtds fikc a modern parsdy uf Sigmund Freud: in other words, women are hysterics, As Freud described them in his 1895 classic Studies on Hysteria, Itysterical tzrornen are prsloundly out of touch wit11 their conflicting emotions and so "'express" then1 through the body in the form of pl~ysicalsymptoms. The patriarchy is a bountiful source of ills for worncn, Northrup says, She describes how she herself "ctgan tu ""recover from patriarchal in Q~~er~ces.'' Nj'krcn i first had a reading with GaroEyn Myss [an ir~tcrrzcnticrnatly known "medical intuitive""1she told me that my body registered a rape between the ages of tkventy-one and twenty-nil~e-the years that X was in 111cdical schoc.X at76 ctoing rgly resideracy. 7'horizgll X had not been physically raped, m y tmdy's energy system had been emtltionaliiy and psycholcrgicall "raped" by my medical trainingsomething I had not been consciousf-yaware of a t t h e tirne.1"

This is not byhat thc Boston iV~r~~ers's Health Book ColHective envisioned in 1973 when it produced its smart guide for women, the landlrlark Ozlr B o d i ~ Ounehw. , It is teanapring to think that Northrug's touting of Ncw Agc siliincss has little impact. But a covetcd slat on PBSI generally regw&d as an upscafe, edhlcationai networiic, confers resyectal-aidiv on her

~cltlandishtheories, What" more, with over one-quarter of a million copies of her book in print, she has a huge audience,

A Specialty of One's Own Northup's ""rp during " her male-dominated medical training is emblernatic of the sexist oppression that, according to the women's health lobby has spread its tentacles through ewry aspect of the medical syscm, from clillical research to treatment. According to the eight female physicians who established the Foundation far 14'onzen" kE-XeaBth in 1996: "Women are invisible in the health care syst~mbeyond their reprc~ctuc~ive systems. The medical mudel using male science, ~nalebody, n~alc.culturc is still the norm. Women die unnecessarily due to this male perspective."" The faundatian9sgoal is to create a specialty strictly for women's health that is similar in status to surgery or pediatrics. The American College of Women's Ijealth Physicians supports this effort: "Those of us who wcrc exposed to Woxncn's Studies in college find MIomcnk EIl-lealtA a very natural trarasitioll and progression," writes Kelley Phitlips, president of the college. "There is littte doubt tfzat the ialcrease in women's political and economic power durilag &c past quarter century is a driving farce in rhr development of a Wc~rncn'sHeaith Specialt?l;'"'" Scsme challenge the push far a new sl)ecialty, Dr.Michelle Harrisatl of the University of Pittsburgh School of Medicine is concerned that certifying physicians expressly to care for women would "allcstv the rest of those in medicine to feel absolved of responsibility for addressing the needs of women." Harrison prcdicts that creating a nt\v specialty woutd "marginaliz[e] those practitioners who commit themselves to its pracFurthermore, says Dr., FXorenze 1-Iaseltiaeof the National Irzstitutes ti~e.'"~ of Health, "we have a women's health syecialty, which is obstetrics and gynccoiogye" Haseiitirte, a brrraer ob-gyn specialist herself>is eager to make needed changes in her field but believes that women's health ""can be addessed by existing [medical] disciylines,""f Indeed, for most doctors (except urologists and orthoyedists), treatiarg women patients is the norm, since women make greater use of I~ealtbcare services than men do. After alE,

women are overreyresented in the age groups that rely rrlost heavity on medical services, constituting a bout 60 prcent of ehc population sixryfive and over. Indeed, apart from tkc trrulagics-11 problems that b c x t old nxrr, geriatrics could reasonably be said to be a woman's syecialt): because there arc mclre than two women for every man over age cighty-five. The Office of Women3$Health at the Department of' Health and FIurrlan Services has not yet called for a women's health specialty, but it is promoting a sey ara te medical schctol curriculum in wo~ncxl'shealth. "Curricula in women's health should begin to erase the misconceptions catrscd by a generation of training physicians in the nrale n~aclcrlof discase,'\explains Eieila V. RiosI a physician at the Office QR NTarne~~'s Hcalth.fi The call for a special curricuEum, like thc desire for a separate syecialty, is rooted in the belief that women are second-class citizens in medicine and that doctors are concerl~edprimarily with the "male model" o f disease. This charge, as we shaU sec, is a fundamental misconceptions underlying much of the advocacy efforts in women's health today.

T h e Myth of the Second-Class Medical Citizepll In 1999 half a million pcopBe in nisneq-eight cities ran the ""Race for the Cure:' Since the first running in Dallas in 1982, the race has become one of the iargcst series uf5K events in the nation, It is sponsored by the Susan G. Komen Foundation, and the proceeds go to community programs related to breast health education, scrcea~ingand treament and to breast cancer research. The race is a testament to t;tro~nen'spasSisn about their health and their faith in the yronlise of medical research to one day overcome a dreaded disease, These affimations are a f"nr cry corn $Eresullen aggrievement voiced by many women's health aclvocates, who accuse the 'caandroc.ea-r~ric'hmedical eslablisl-irnent of treating women as second-class citkens,'" The former dean of the Berketey School of Public Health, Patricia Be~fflea;has reinarked on the fact that "there is so much outrage that half the human populatiorl has been left out" of clinical trials.!7 First Lady Ftillary Rod-

ham Clinton has rcmarlced on the ik12pallingdegree to which womes'l were routinely excluded from major clinical trials of most illnesses."lfi During his presidentiizl campalp M Gore fold an aucliencc: ""'Tlirougtloutmy career, E have fought for more xsearch ft~ndstirr those diseases so recently considered less in~portantbecause they befell only women, such as breast cancer. . . . I pledge to you: tvumcn's health will always be at the tap of my agenda."m Et is hard to imagine what rnore Gore could do. LVon~enreylrsented 62 percent of the more than six million participants in NIH-filnded research in 1997,according to the NXXlk COffice of Itesearch on Wa~nen's Health.'" Breast cancer research has received more lnoney than any other type of cancer research each year since 1985, when the National Cancer ~xrskila-ttt: began keeping track of disease-specific furrding. 11has always received many times the fundili~gof prostate ca~~cer-about five times the arnlount in 1997 and triple the eqenditurtt in 1999,"l "Pbese imbalances have prompted the Men's Health Network, a Washington-based group, to lobby C:ongrcss fix rcd~ss." Thc incidence of invasive breast cancer in ~varne23is a IittXc less than the incidence of invctsive prostate cancer in men, In 1897, the last year far ~ r i ~ i cthe h KlH has prrblisked data, t 15 women in 104),800 received a diagnosis of invasive b ~ a scancc3; t while 147 men in 1041,000 ~ c e i v e dan invasive prostate cancer diagrtosls.23 Overall death rates are alnzosr identical, but the mortality patterns differ with age. For example, almost twice as Ilzallgr linen over sixty-five succumb to prostate cancer as do women tu breast cancer. Rut breast cancer in young women is five times more lethal than prostizk cancer in young men, Though relatively few w r n e n (and mell) under sixty-fiw die icra~ncancer of any kind, onc could make an argtlxaaent that breast cancer warran& more f u ~ ~ d i nthan g prostate since its yc3rmg victims fire less well, Breast cancer dso receives considemble ftinbittg c o m p a ~ dto other diseases, A 7 999 analysis in the JV~W E~glil~kCZ jlrtlrtlal r!f~Wedicinrcanducted by Cary P. Gross of the Johns Ffopkins University School of Medicine and his colleagues examinled how the NIH sets priorities for funding cl~ecificdiseases.24 M e n the researchers calculated allocations according

to the number of years of hcajtfiy l i f e lost to a disease, breast cancer was found to be atnong the five conditions most "generously" funded; the other four were heart disease, dementia, AlDS and diabetes, The enorrnous focus on breast cancer by wonlen's health groups has probably contributed tn worncn's skewed app~"cI"tion of health risks, Some middle-aged wornell believe they have a one-in-nine chance of dying frorn breast cancer at any point in time. One popular activist coalition an l,ong Island, New York, cails itself "One in Nine." h t in fact, rhe one-in-nine figure applies to a woman's chance of developing breast cancer in her lifetime If she lives to age eighty-five, In other words, one in nine women who live to age eighty-five will have had callcer at some point. A forty-year-utd wolvlan with no special risk factors (like a mother ur sister who had breast cancer at a young age'), for example, has less than a onein-two-hundred chance of getting breast canccr; the likelil~oodof dying forn it is still sluraller. According to a 1997 survey of one thousand wolnen by the National Council on the Aging, only one in four rccogniizcd that lung cancer is the jcading canccr killer among womcn.'s In 1997 about scventy thousand w0n.re.n died from lung cancer; less than forty-two thousand died from brcast canccr. Though heart disease, not brcast callcer or lung cancer, is the biggest killer o f women-annual deaths from heart disease excced deaths from all cancers coxrmbixred-l-zreast cancer coneerns then1 Inore, according to the survey Elaine Ratner, author of f i e Feisfy bl"omazS Bwast Carlcer Book* is worried that the "fear of breast cancer has reached epidemic proportions . . . because brcast cancer has moved into the spotiight," FEaving been treated for canccr hcrself, Ratner says she feels lucky that it was in her breast, "Na other body past: is as expendable,'" she writes, but she sirspccts that many women forgo mammography because thcir inflatcd idea of breast cancer3 lethalily s a x s them awdy,"? Less than 4 percent of women will clie of breast carrcer, avhile about one-thircl wiU die of heart disease,'7 ""X-%aven9t rye induced an urrn-tlalistic fear in our efforts to raise awareness?'" asks Jane Brucly>the Ibk1.1~York Tima health writec Heart disease, she writes, "does not con,iure up anything like the fear that breast cancer does."'"

WFomen\ health has also received considerable attention irz Congwss. The Ereast and Cervical Cancer Mortality Prevention Act of' 1990 authorized the CDC to provide free Pap slnears ancl screening mamIx1.ograms for indigent wome1-t. In 1999, $ L58 n~illionwas apympriated for screening. In 1998 and 1999, dozells of W O ~ I ~ I I ' health S bills were introduced, The Breast Cancer Patient Protection Act, for example, would guarantee a minitnurn stay in the hospital of li3rty-eight hours for mastectomy and hventy-four hours for 1ylnpi-xnode removal; the Breast kconstruction Snnplernctation Act would guarantee insurance cobrerage for postmastectorny recc~nstxuctivesurgery; the IVomen's Health and Cancer Rights Act ensures coverage for hospital care, procedures and second a p i ~ ~ i o n s . ~ ~ A few years ago the issue sPrnamrnogranzs for wetazen in their forties became an urgent rrlatter for lawmakers. In the winter of 5997 an NIX? conscs~stlsdeticlopme~~t conference announced that wornerr in their ictrties should decide for then-r?seXves,with the ac1\?3ceof their doctors, whether to get the breast X-ray.30 Given the high rates of false-positive mammograln r e s u l ~which , lead some womerz to undergo needless surgery and the ncgligible ~ d u c t i u nin mortality associated with the screening of women in their brties, the panel concluded that a universal recommendation far annual or biai~nuaImam~xcdgrayhywas ua-rwarranted* lclany in Cor~gressfound the panel 'S pyronsuncement unacceytabte. Within days of the cc~nferenceSenator Olympia Snokve, a h4aine Republican, introduced a nonbinding resolution in Cavur o f mammography for women in their forties. The resolution, which passed 98-0, advised the National C:ancer Institute (an NIH agency that played n o ctvcrslght role in the conference" recommendation) to "direct the public to consider guidelines isslled by other caPlcer orgaalizat.ions.'"p' The resolution also called sn the Ndtiond Cancer Institute's (NCI) advisory board to issue its own recommendation in hvur of regular malnmograms for women in their forties, h o w those urging the a h i s o r y board were thirty-nine congresswca~~cr-r, "!Ye believe the only rcal option?is tu give guidance to t h women ~ of our country," they wrote in a letter to the isoard.32 About a month later

the NCI boarct did just as the cswrcss.~nrol-rzcnreclutsted, earning the praise of HSS Secretdry Dsnna Shalata: "Today yedrs of confukon have been ~ p i a c c dby a clear, consistent scientific mcommendatis~zfor women betbreen the ages of 40 and 49.''33 Tfae iruny of clamming for explicit direction when won~~eazk health advocates had Ivng been promoting self-determination was noted by Virginia 1.. Ernster, an eyide~niologistat the Univerity of CaLitbrnia at San Francisco. "bVill physicians who promote ixlti-rrmed choice he open to legal suits!" she asks in her account of thc mammogram debate, published in the Alnerican lozkrzlnl qf' Plafilic Hen&. The furor was unparalleled, she writes. "Probably never in the twenty-year history of such conferences has a resulting report ever geracrated more rancor and nnedia atter1tio11."34

In Search of Sexisfn In its E 999 report to Congress and the president, the U,S, Commission on Civil Rights expressed mnccrn about "gender bias" in our health care systern,'" It pointed t s unfdirness in several syhercs, including the career devefoy ment of women physicians, women" pparticiy ation as subjects in experimental trials and the y uatity of their clinical trtratment. Let us begin with career developn~ent.The co~~rnis&ion claimed that medical schools practice the "steering of female [xnedical] students to ward the more 'accepted' specialtics such as pediatrics and general practice:' while men are "more likely to enter the richly rewarding surgical subspecialties."'?Thec o m ~ i s s i u npresented no evidence that woanen are encouraged to select certain syccialties. In fact, a fuller picture shows that many ezionlea doctors who want to plan a family are attracted to specialtics with the shortest residencies (family practice, internal medicine, pedii3trics and psychiatry) -37 Surgical subsyecialty training alter medicai school car1 take up to seven years at a time of life when women are in their prime childbearing years. True, the culture of surgery, with its brutal hours and strict hierarchy>may not appeal ta nlany women, but those who burn ta bt. surgeons

wiU make it through. "If you wallt to do surger$"advises *MaryAnn Ijopkins, a New surgeon, "'do it!'"b"I?atk mmorr, sbc points out, women surgeons arc highly sought after by both training pl-cbgrams and patients, est'ecially those with breast disease.3WObstetrics and gynecology, the specialty with the higk.lest malpractice insurance premiums in medicine, attraits 9 percerat of women medical students and 3 percent of men,"' The Cornmission on Civil Rights leveled another charge of sexism against the fk~ndingof medical research conducted by wmetl, Cziting data from l98 1 to t 992, -the to~mrnissisnnoted that women rcccived 2 l .5 percent of at1 research project fu~zdingfro131MtH and that their grants were, on average, $30,000 lower than gralmts given to male scientists. Calling this an '"uneven distribution" of funds and "it blatant civil rights violiation:2Ihc ccgxr~missionsaid that HHS ' h u s k marzdate that female scientists are akval-ded granlts at the same ratio as men"' to ensure that women conduct their fair share of the research-40 Remarkably9 abselnt aray evidence that quality proposals from women were being rejected at a greater rate than comparable proposals from men, the commission was not only claiming discrimination but advocating that grants be distributed according to the al?plicantk sex rather than the merit sf the proposed rescarch. Ironically had the commission looked at data from l9992 to 1998, it would have seen that mcm and women enjoyed comparable success, For exartzpiie, in l9%, the year far kvilich the rnost complete data werc collected, 18.3 percent of female applicants were awadcd grants compared with L 7,1 percent of the males; the sex of 3.5 percent of applicants was unrecorded (and about 15 percent of these ap17licants were s ~ c c e s s f ~ t l ) . ~ In other years the proportion of applicants who did not specify their sex was mlrch kiighcr, up t s 27 percent in 1997,prompting the NIH's sQffic6:o f the Director to warn that use of these data was cluestionable, ""The unknown is so large that compariso13sof male and female arc: nut valid; I was told by the Office," And the size of the grants"1H has not tabulatcla such data since 1992, but according t o Mohcrt F, Moore of rbr Dkision of Statistical Analysis, the larger grants tend to g0 to more senior researchers, who are mak. As felrzale researchers onovc

through the pipeline, kIoore says, they too will be srrbnzitting grants with larger budgets. Rut byhat arc the prospects for such advancement? For decades women physicians entered academic medicine at higher rates than their male counterparts but firerefar less fikeiry to be found at the associate and full professor levels, according to a study by Lynn Nonnemaker of the A~nericanAssociation of Medical Colleges.4' Is discrimination to blame! Nu one can say w i t h u t first examining the proportion of assistant professors who met criteria for ad\rancemcnt but we^ not promotecl, 'fhc current imbalance in the promotion of men and ~ r ~ r n e 1could 3 be due to a host of hctors, one uf the most Iilccly being lower production of puhfications by women who spend time away fram t l x laboratory to tend to fidanif y respansibiiities, Nonnemakcr's data support this interpretation. She found that women have a greater chance of being promoted from associate to Elrli professor than frorrl assistant to associate, suggesting that the point of departarc. from the tenrrn: track occurs -\hihenwomen are in their tate mentics and thirties-about the time when they are having babies and raising )fortrig children, It is importaa~tthat we learn nzort. atlour the reasons for women's sI~)weradvancement, but until then it would be fdly to heed the injuaaion of Dr. Catbcn~lcDeil-rgelis,now the editor of the k~drndo f t / ~ e ,4nrericnl.11Wediccl.l Associntiunl that women "must be prontotecl at a rate that is equitable to the rate for men."nlg To our north, the same debate about gltass ceilings has prompted the Canadian bureaucracy tu act. Worried because there awe fewer \r\r~metlRsearchers than men, the Natural Sciences and Engineering Research Council, Canada's main funding agency for research in biologj~,chemistry and phjfsics, i-einstatecf its practice of giving certain grants cxclclusiwlp to women, Xn a letter to the commission, Doreen Kimura, a professor af psychology at Sirnon Fraser University in BritisIt Columbia, a grant recipient herself and president of Canada's Society iksr Academic Freedorn and Scholarship, wrote: "I and many other scientists are deeply concerned at wl-rar amounts to flagrant discrimination?in the distribution of a valuable research r e s ~ ~ u r c e ~ ' ' ~ ~

7"hr targets of the discrimination rc;> whlda Kimmra alludes arc mcrl, fn factpdata show that women have been preferentially hired in Canadian universities, incjrrding in the sciences, since the early 1980s." KMimltra also questions the irnyor&xrce of sanne-sex role models, anolher of the corn~~zission'srationales far promoting women nor~competitiveE).,More women csicsuld become scientists and physicians, goes the theory, if there were senior FvtJImen t~ mentor thesn, yet in Canacia, as irr the United States, women are entering medicine and the biological sciences in numbers that are equal to or even outstrip those for men. At the very least then, their predominantfy male professors have not been hldirrg the~n back. Some might argue ahae wcjmen haw made strides in spite of nut having fenlale role models and mentors. True, there are fewer women in engineering and physical sciences, but data suggest that this reflects pxfe~"ei~ce-evclilthe most rnathemi3ticalty gifted high school girls are less Ilkely than sirnitarty talented boys to choose to specialize in mcathernatics or the physical sciences in college or graduate school.'"': Indeed, xreither Kimaxra nor X could find credible evidence that walncn learn better under female tutelage or that they are more interested in studying under female professcars (save for women2 audies students).

The M y t h of Gender-Biased Research The U.S. Commission on Civil Rights also cites as evidence of gender bias it critthe allegation that wornen have been excluded fro121clinical trial~.4~ icizes the ""gender-incompetent rrmanner" "with whicl--rcare is delivered, citing, for example, the fi~ilureto treat wornen aggressively for heart discasee4gAs we will sec, tliaese claizns are highly misleacli-ng, h o n g the many myths perpetuated by the women's health lobby is that tvomena.hwe been systcl-naticallyexcluded from participating in medical research, m e n she was head of the FIHS Office of"tVorr~enS Elealth in the mid-193Cfs, Dr. Susan j, Blumenthal routinely spread the word that wo~~cr-r had been systematically undcrrcp~sentedas subjects in medical research, This spurred a campaign un Capitol l-ilill to get Ivosrten into re-

search studies, '"It was my female colleagues and 1 who led the charge to put an end t s clinical trials conducted entireiy s n men---ewn for breast cancer," Senator Olympia Sno~vesays,"' But rreither the senator" clairxs of success nor BllunnenthaE's accilsations of sptematic undlerrepp~s~ntatioll arc correct. Thc fact is that neither the NIH nor drug companies cvllduded trials predominantly on men, Andrew G. Kadar, an ar~esthesiologistat IiCLA School of Medicine, was one of the first to point out the sex-bias mflh in medtdnc, "For a decade nolv charges of gender bias in medical care have gone unans~rcred:' he wrote in d ~ Atlnrltic e ICrlonlhl2, in 19%. If avthing, Kadar pointed out, stuJics that looked at only one sex more often focused o n women than ~2en.3i That is ertainly the case with antidepressants. Back in the late 1950s and 1 9 6 0 when ~ ~ these medications were being tested in clinical trials, women were routinely includcd2W~)neo f the largest an J earliest studies T muld find involved 215 subjects and was conducted in the late 1950s at the Massachusetts Mental Health Clinic.' Most of the participants in this placebo-controlled study of two antidep~ssantsWE women (or "houscwives:hs the authors called them). Ncwrtheless, w0rnel.r" hheatth advocates routinely claim that the hormonal fluctlratiuns brought 011 by women's rnenstruraI cycles led researchers to bar them from clinical trials and thrrs early antidepressants were not studied in women,"" Goverrrmental surveys in 1983 and 1986 fourrd that ""botfi sexes had substantial presentation in clinica! trials . . .in proportions that usually reflected the prevalence of the disease in the sex and age groups inclucted in the triais."ii In fact, conditions such as depression, osteoi~orosisand arthritis have always been rrtork. thoruug!21y studied in wonten, the FDA found, This should come as no surprise, sincc =searchers tend ta study the group most at risk, \il"hen the Institute o f Medicine conducted its study on the status ofwo~nesras research subjects, as requested by NI13 in 2991, the institukk pancl could not ""nail doivn the truth o f the perception that women have beet1 under represented'? in clinical trials,'" Still, as late as 1 9 9 advocates like PhyIlis Greenberger of eke Sociee.). b r 1Women7sHedth &search contl~luedta make remarks l i k : ""If's going to take some time before it$ generally accepted that women and men have to he in clinical trials.""" 111 the spring of 2000 I receiwd a prnmotiorrat let-

ter Gom the HnrzinreZ kIbtnerlS Heabtlz kVntch newsfetter tdling rtladers that "nearly all drug testing has been done on men:''g i%'rirong. The Office of Rescar& on !Vomcn's Health at NlH, c ~ a t e din 1990 to respond to iust these concerns, found that in 1994 research subjects h r ongoing M M clinical trials were 57 percent vI.iclmcn, 36 percent men, and 6 percent urtk ~ m ~Thc ~ n c,o r n p ~ s i t i ~OFn subjects in trials funded in 1997 was 69 percent wonlen ancl 31 perce~lt133en.59 Women's health advocates hwe a way of t;aking credit fbr conditions they did not create, For example, they attribute the rccea3-r:nrrmbcr?;of women as sub*iectsto a I993 law rccluiring NXH-funded researchers to include women. It may well be true that women's prrdon~i~lance in trials is attrilsutabfe to the I a q but W O ~ C I I ' S indtlsion predated 1995, the year Ihc law went into effect. According to the earliest NIH data I could find, since 1979 wo~nezlhave been wry much a part of the rescarch enterprise. That year 268 of the t o l d 293 HIM-r6unded dinicaf trials contained female subjects, Thirteen of the 293 lliere dl female, and 12 were aiif ~ x ~ , a l c ~ ~ Since the mid-1990s major phar-maceutieai csmynnies like LiXIy, Pfizcr and Wyeth-i\yerst have boasted of their "women's health" divisions or initiatives. In doing so, they have largely repackaged research already under way, "More pharmaceutical companies are cxyected to develop ivamen's health initiatives, if anything, to avoid mishaps in markting;'' the iVew York Times reported. "Many of the Ilew drugs yrornoted during the last several years-notably treatments h r migraine and dopwssion-arc so sil-tllgar in effectiveness [in Ix2csn and woamenj that the manetFacttarers have ta find other. selling gointseBH One can't Fault these companies for seizing the opportunity to hit a public relations home run. After all, despite the prevailing assulnption that wcrlrtlcn are underserved by the health care system, women buy rrmare pharmaceuticals than men and visit doctors tnorc often. The upside of aggressive advertising is that it may help i n h r m women and belter prepare them to ask questions of their doctors. But the fact is that clinical trials for drug devclcppment have rorrtincfy included women. For decades, drug cornyanies have been developing medications for menopause, osteoporocis a n d other conditions that exclusively or disproportionately affect Myomen.

When Excl.oasis~1Mezkes Sense Have vvomeua ever been systematically omitkd 11"01"61 clinical trials? k s , starting In 197749, the Food and Ilrug Administration excluded pregnant and fertile wornen from participating in the toxicity testing of pharmac c ~ i i a l s'The , policy, ~vithdrawl~ in 1993, evolved in the wake of t h birth ~ defect tragedies associated with thalidomide and diethylstilbestrol (DES). k%Tomenwere excluded Itram the so-called phase I and II clinical trial the small-scale safety-testing phases of pharmaceutical trials-to pmtect fetuses and, to some extent, avoid liability. Thsugkz the policy deserved its labcl af paternalistic, the point was $0pmtect wcjn~enand fetuses, not $0 fdvor men at their expmse. Indeed, men themselves have not been rushing to volunteer for toxicity tests; why else would so Inany of the subjects who sign up be men from military bases and prisons? IVhen wonaen havc been srnitted fro112 othcr studies-the so-called late phase II and phase III studies of effectivenescthe reasons have been similarly practical and well intentioned. Somtimes women were nut known tr:, bc at risk for a, particular illness at the time thc rcscarch was canduckd, Such was the case with early ciiinical trials involving patients with AIDS. in the early 1980s homosexual men were the only gmup identified by the CDC as being at risk, but as it became clear that \vc?rnen could also be infected, researchers began to recruit them. In 1986, for example, only 2 perccxlt of subjects in ciinnicai trials were women; by 1942 nlore than 18 pertent were women. Despite their 15 percent representation among all AIDS cases in 1098, they represented 36 percent of all subjects in NXTZ-funded AIDS clinical trials,bz Anothcr reason for limiting certain trials to males is the f i c t that fenldc subjects possessed clinaacad characteristics that made them difficult and expensive to study at a point in the investigation of a new treatment where the most basic questions of clinical value had yet to be answered. The older age at which women suffer heart attacks explains their absrilce from a number of large NIM-fursded cardiac trials conducted in tbc 1970s and early 1980s. Researchers had learned from the first major federally fk~ndedcardiac study*the Framingham I.Icart Study?that ~romen's

phase of risk far kltart attack is ten to melaty years later than that fbr men, When Framinjil~amresearchers recruited their first cohsrmof subjects in 1948, f ~ ~ l55 l y percent were women. Because the women wtx'c relatively young (ages thirty to sixty-two) when the study began, follow-up in the early years of the study revealed few myocardial infarctions among the women, Age has had a major efkct on participation in studies of coronary risk factars, OIder subjects, whether rnen or wo~nen,are underreprescnred in heart disease trials, Indeed, the Lipid Research Clinics Ccrrunary X3rilnary Prevention Riat (designed in the carby 1960s to look at the benefit of cholesterol-towering drugs in people under sixty-five with a prior history uf heart i3ttac.k) and the large Multiple Risk Factor Intervention "rrial and tipid IXesears-h Clinics in the 1WOs (both of which exalnia2ed risk factors for heart attack) IcA worracn out because the focus was on preventing heart attack in middle age---and few middle-aged wcjIncn suffer heart attacks, Also, the eiderfy subjects arc s m e t i m e s too frail to tolerate the study p r f ~ e d u r citself; this was the case with t r ~ a t m i l trials ~ ~ t related to angina (cardiac-related chest pain), which usually require vigorous treadxnill exercise tests.h" i 992 article in the Jolerrmk"c$ the Avrzcricnn Medim2 As~ocI:l;lti~)n by f, H , C ; u r w i ~and ~ his coleagucs, "The Exclusion of the Elderly arrd \Yamerr from Clinical Trials in Acute Myocardial Infarction," captured the phenomenon nicely.'." In reviewing trials froln 29(50 to 1991, the authors found that more than 60 percent uf them excluded people--women and men-older than seventy-five. C;urwitz's research team concluded that age, not sex, determined who was enrolled, This simply reflected the way research is done: wl~cn scientists begin studying a condition, they choose subjects who are most at risk and least medically complicated in order ta control as many variables as possible, Because women are oirder when they manikst heart disease, they are rmre likely to be suffering Groan additional age-related illnesses and taking several medications, clinical realties that make it difficult to assess the impact of the interventictns being studied, 'This explains why older male subjects were also osnitted. Research on blood prcssurc feflccts this practice as wefi. The large 1973 Hypertension Dc-

tectian and Follow-up Study financed by N f W enrolled comparable nuambers of men and women because both sexes enter the phase of risk at al>ot18:the same age, fin all^; expense plays a role. The I98 1 PiE~ysiciansHealth. Stucly-the stu* in which aspirin was found to reduce the risk of heart attack-induded only maic physicians as subjects, P'liysicians sverc seleckif as the study pop-lrlation bet;:luse they were asswed to be likely to have a high rate of coanp'liance with the self-administe~dprcbtcpcu'l."" ""Maley hysicians in particular werc sclei-tcd because very few female doctors (about one for etrer)jten nrales) svere old enough to be at risk For heart disease when the trial began. Young female doctors could havc becn included only if many msrc. subjects were enr~llcd(to enhance thc cl-ranccsof '"catching" h e few at risk) or female enroltees were observed for a longer period than male enrollees. Crsnsider this f x t tots: abau t 260,008 nsak physicians were screened for the 1981 study in order to recruit the 22,000 who actually participated. Had the study been perbrnled on worr?en, the number of subjects screened and then randomk~ed1.0the placebo and active arms of the trial w u l d havc had to he three t h e s as iargc-and the srttdy at least three times as exgensrvc---to obtain the same magnitude of rcsults fc~undin the men,"" For the past two decades women have been rey~scntedin most cardlac studies to the degree that they are at risk, b a the practical reasons for their earlier omission are unappreciated by the Commission oil Civil Rights and many women's health activists, So are explar~ationsfor pl~ysicians' tendency to put wornen through fewer complex dragnostic procedures such as ar~erialc a t h c ~ r i zation. The combination of age and callcurrent disease has traditionally put them at higher risk for adverse side effects. ivVonzenk ss~nallcr anatomy is another consideration, The arteries around the heart, fur exm r > l e , are sometimes too narrow to accommodate the dog-cleari~~g dcvices, In fact, the rate of complications, including death, fium trying to unclog arteries (through procedures such as baXloon angioplasty), though small overall, is still considerably higher in worrtene6?n the excel'tion that proves the rule aboilt size, one of the very first artificial

heart operations, in 1966, was perhrmed a n a Iltirty-~eved*l--year-o1d whose chest cavity was big enough, "1,"tJe're always trying to pcrfect the mir~iaturizalioraprocess,'" says-Michaef E. ReBaEccy, the pioneering surgeor1 who did the o11eratio11.68 Indeed, cadiac surgeons are developirlg ""liyhule heart strrgerg a. minimally invasive form of surgery used to repair heart valves, perform coronary artery bypass and repair congenital malformations. The rnajor advdr_itagesu x r traditional open-chest methods are ducti ions in blood loss and in the chance of wound infection, because there is less tjrss~~e traulna, Also, the typical hospital stay is less than a lveek, Stepken 13. Cobin, chief of cardiothoracic surgery at New York University Medical Centcl; is perfecting this technique. He predicts that older and rn0r.c. fragile palients with cardiac disease-that is, wu~nen-will be especially gaud candidates. In fact, Colvin and his team chose to offer the keyhole surgical techniquc (which now almost unc tl-rousand patients have received) not to yo11nger and healthier patients btlr to those with diabetes, osteoporasis and previous open-heart surgery The prctcedurc, he said, '"is especially beneficial for older, frailer patients for whom open-chest surgery wau td be devastating or ~artntraitldicated~"A9 Another difference in the use of procedures between men and ivomen ref3ects the difi2culty (3rf making a diagnosis of heart attack in women. The reasons a r e multiple. The location and natuPe of chest pain do not always foliow easily recognizable patterns, and exercise treadmill tests and imnging studies Inay be difficult to interpret. Even if her chest pain ibllows the more typical pattern, a sixty-year-old woman has an approximately fifty-fifty chance of haviilg significant coronary artery blockage; a s i x t y - ~ a r - o l dm n with the same symgtcrms has a 90 percent cllance of hnving blr>cka;ge.'o If a wornan doesn't realize she is having a heart attack or the physician is confused by her symptoxns, she will miss the time-sensitive window (within about twelve hours of onset of symptoms) for receiving clot-dissolving treatment (thrombolysis)." If this trcatlncnt is not administered witli~inseveral hours of the onset of chest pain, the bencfit of dissolving the clot may no longcr exceed the risk of causing bleeding eisewhers. in the bo~ly.~?

On the other hand, if her chest pain symptoms are aaot really cardiac in origin, a wolnan may undergo needless intervention. Indeed, actual cornnary artery sbstruction is minimal or ahsent two to three times as often in waxnen as in men, a discovey that repeatedly emerged when women jvere catheterized on the presumption that they were at risk for heart attack.73 (Notably, when a definite diagnosis of heart attack is made, women are as likely as men to undergo catheterization, dot-dissczlving tlaerapy and bypass,) By comparison, with medical conditions djagnoscd more readily than heart attack, lib infection, sex-related diEfcl-cnces arc nor an issue, For example, women and men with pneumonia and orber infections x m i w the same tax-antibiatic treatmei-rtis sbrted rapidly in both, ancl treatment i s of sin~ilarduration.7"

Outrageous Practices! 1?l&vc4carescondemn the omission of wonaexa froan some studies and the Besscr tikcIihood that thcy will undcrw certain procedunrs as evidence of the devaliuaGon of wonlen's lacajth, yet they turn around and charge sexism again when women get too much attention from othcr quarters of the medical prcafession. Efforts by Pfizes, the ~nankrlactrtrerofViagra, tu apply that medication to women were condemned by fexnirrists as attexnyts to "medicalize" fe~nalesexuality-that is, as turning sexual responsiveness, or the lack of it, into a discase that needs to be curcd. In protest, a number of women's groups gathered at an international meethlg sn female sexual dysfunction held at the Boston University School of Medicine in thc frill of 1999. Acwrding to the Boston Globe, the women considered using a six-foot papier-1.mnhchd vulva as part of a protest dispjay*Though they ultimately r e j e e ~ dthat idea, they remailled wcal about their concerns, For example, h u l a Clayian, a psychologist at Brown University, i-retted .to the Globe reporter that a sexual enhancer (such as Viagra) for wornell "is going to put enortnous pressure on womcrr who may not want to haw sex:"75 Gynecologists have also been criticized for paying too ~nuchattention to women, "The Z,ord givetk and the gynecologist takctia, atvi~y;kclairnis

the antihystcrecton~ygroup HERS (f-iystcrctctony Educatioxaal itesources and Services Foundation), implying that women's surgery is propelled by mercrclnary i n t c ~ s t"Gynecoiogisrs, . hospitals and drug companies make more than 5 biUion dollars a year from the business of hysteree-tun~yand cast ration."^^ But what about the benefits women1 derive from hys~reaonny?Hnterviews with women just before and then several years after hysterectomy have found that urinary incontinence improws, sexual interest increases and pain with intercr~rrnediminishes after hyseerectomy.77 In 1999 Urziwrsity of Marytaaad epide~niologistsreported in fAWA that women enjoy enhanced sexual ft~nitisnkgafter hystcre~tomy7~ More than eleven hundred women were interviewed before klte procedure and then several times withirr a two-year period after it, b%ererrs 7 9 percent co~np1aine.dof pain with intcrcuurse before, only 4 ycrccnt had this symptom two years later, 'There are several reaso~tsfor less pain with sexual ir~tercoursea f er b~tersctorny~ includirrg the changes In anatomy that accompany the procedure and its ameliorating effect on chronic pain and bleeding (rnast commonly from endomctriosis). 7"e treatment of breast cancer with radie-231 maskctonl)i, the standard pmcedurc until the early to mid-1980s, skill rankles some women's health advocates. In her 1999 book A DnrErer Ribbon, Ellen teopold? a writer and menlber of the W o ~ ~ e nCummunity 's 0ncc.r Project in Cambridge, Massachusetts, opines: The surgical removal raf the breast has to be seen as a vic~lenract. The ayparerlt barbarity caf the procedure raises the question of male intent, It is not much of a stretch to view surgery as yet an~>ther tapporturaity to purlisb a worninan f t ~ the r ambivalent feelings she pro~lokes.. . . The aura surrounding breast surgery reinforced thc worst gcndclr stercuryyes, attribtating (111 power to the male Kerc),'""

"Today we? know that radical mastectomy is not. necessary for most women, but belbre the late 1970s and early 1980s it was the accepted lifesaving procedure, A surgeon who did not perbrln it would have been

considered derelict. In hindsight, we can see that many wcrlrtlerz underwent needlessly aggressive surgery, but there wasn't a gender bias: men too have been subject to the radical nature of cancer surgery, 'Thotssaa;lds of men with yositi~feblood tests as their only sign of possible proseate cancer hak~e undergone necdless radicaf pmstatectomies, sometimes itlvolving the removal of pelvic nerws and thus destroying their ability to perforn~sexually. Then, if rnetastases appeared, lnen were castrated, since testosterone seemed to promote cancer gra~rth,The developn~cntof mori. conscrvativc and safer pmcedures and operations for both women and men is a continuing priority for physicians, but surgical practice must not be taken nut of its kistoricak colltext, Until the 1960s and f 970s that context reflected a different conceptualization of ca~lcerpathology than doctors hold today. "The flawed concept . . . that caalcer was a local proess and best approached by extensix excision of surrounding tissue was applied to all types of tumors:~feromc Groog>anan,an oncoiogist and professor crf medicine at FTarvard, points out, In rctsponse to Leopolbk feminist interpretasion 0f breast cancer, C;roopman cannot help but wmcict in his r&.vic~v of her book: ""Bocs this mean that urological surgeons were, cunsciuusly or subconsciously, acting out as alpha males to d m i n a t e and abase the vulnerable rnen of the tribeT3'SO In the 15394 book Outrageous Practl'cm: HOWCa'entferBias 7'1?~ea&ns hior-llen's Health, the journalists XdesliieLaurence and Beth Winhouse note that elcctrocunvulsivc therapy is given to women disproportionately and say that '"hat alis worrisome is that more women rhan rnen are gettillig a pc~tentiallydamaging treatment:'" "clmen do, in fact, receive ECT more oftell than men do. And with good reason: Inore women than men are diagnosed .cvitfi dqressiun, Furthermore, there arc rnore elderly females with depression because wolnen live Longer. ECT : is often safer than mcdicatisl~in the frail elderly; properly coduceed, it rarely leads to complications and is generally very effective. Yet kvhen the authars were gtlests an Clpr~iz,the host whipped the audience into hooting indignation at the plight of felnale patients, exclaiming, "Are you angry

Vive la Diffduewce?: N o t So Fast T h e women" llaealth Iobby atso conicnds that researchers h w ignored ckgenifer-specificazedicine:kr differences in the way men and 14~on3en respond to naedications. 'To be sure, some meaningful sex differences ds exist, The hormonal fluctuations af the arzenstrt~alcycle, pregnancy and

menopause and the use of oral contraceptives may interfere with the effectiwness of some medications and not others. But tntufix~gthe discovcry of gender-bascd differences in pharmacology as a research revolution is prematur.c.; i t s practical impact on disease is only starting to be evaluated. Mtlctl of the emphasis on ""gender-based medicine'hseems to overlook the Fdct that wlzerz yhysiciaxls admirrister medicatiazzs they e;zifor the dose to the particular patient they are treating, Thcy account h body mass, fit, kidney and liver ft~nctionand additional medications the p"fient is taking, i n some cases-as when sraedic~ingpsychosis or pain-dosage is based a n intensity of symptoms and then ralsed if they persist or Bowcred if side e.rffecas arc too uncombrtable. In short, patients generally end up oa individualized, elrapirical dosing sckdules that do rast rely on a set fc~rmufaderived from gender colraparison research, Nevertheless, if sex-based differences are sometimes impureant, it is striking that a failure to look far the112 is reliably depicted as hurting only women. "M'omen are not ~nerelylittle men:' said Phyllis Greenberger of the Society for Women's Health Research in asserting that lvomen get the sl~ortend of the research stick rvhen researchers assunae that results of mixd-sex clinical trials automaically apply ta women."" Perhaps dislinctions in drug responses have been glossed over too readily, but if so, then large rnen have been disadvantaged as well. After all, averaging the results o b s c u ~C s l i ~ csex-rcirated ~t~ differences for bob sexes, As if following Creenberger's lead, the New 'virrk Tilni"~ran the fai[owing headline on a i~urnberof reports on wc~men'shealth research: "Re-. search Neglects P"tJunnen%Health, Studies Find: Reports Say Health C$i'riais Often Disregard Differences in the Se~es."~%~n editorial in US.4 Toriay

echoed the sentiment: ""Gowrnment-Funded Studies Ileny PVomen &y Health Data:?t went on to rehash the myths about women's health: "The habit of overlooking vllomcn in medical ~ s c a r c his deeply ingrained and hard ta shake. Far decades, women have been alterrzatively ignored or overprt~tcctcd,And the wscarch hierarchy is still largely dominated by the interests and concerns sf white males,"M The fclctts of both the dp\,TewYork Tinrt?~ and USA Ejd~rhjfartides was a repart on the status OF NTamerras research s ~ i ~ , ~released c ~ t s in the spring of 2000 by the Gcncral Accounting Office (CiAO). The report claims that many clisrical trials have not included women in "numbers large envugBn to allow analysis that wiould definitively nleasure different outcomes for tzrornen and men*''" The GrlCP is rckrring to a provision of the g993 Nf H I<evitalizadionAct that recluires N1iF-l-hnded researchers to conduct: a "valid analysis" of sex differences, a provision pushed thmugh largely at the behest of the Cangressional J%bmen'sCaucus." That NIH-furrdecl researchers failed to consistently conduct sex-response analyses, the GAO SixYS, suggests that the NlI-I was rrrniss in e~~forc'ing the analysis rcytririr~ n c n of t the t 993 Eaw. But the NtH is keenly aware of the anaiysis mandate. From the very beginning, the exact meaning of the trrm "valid analysis" has been a topic of heated dcbi.tte among researchers. If civalidanalysis" 'leans the ability to discern a sintr'rticnt'ljt meaningful differerlce in resporlse betweerr sexes, researchers point out nervously, then the difficulty of doing clinical trials greatly increases. It also poses ethical challenges. Imagine that a treatrrlent for lung citncer is being tested in a group of men and women, and early results show that: it is wry effective in causing tumors to shrink. Commonlj: if studies show a strong effect, either beneficial or k~arfi~ful, in the cohort o f patients enrolled early an, researchers arc ethically required to halt thc study, If the drug is a boon, then its me in other patients is rapidly promoted; if it is harmft~Lword goes out to researchers and doctors arid patients to csrzsidel- stopping its use," Analyzing data by sex introduces a big ethical wrinkle: If dramatically positive results are found, what patient is going to w a l ~ tto continue on placebo just so researchers can study enough subjects for a subgroup analysis? Moreat~er;is it ethical to give a female patient a %>laccbo when the

experimental druff has already shown itself to be superior to placebo irz both rmen and wonlen? Ethics aside, sex comparisons would inllatc thc costs of research hecause statistical analysis requires large numbers of n ~ d and e female subjects fClr cach clinical trial, Consider that every study has a minimum of two groups right from the start: the group that receives the inedication or intervention, and the control (nr placebo) group, Adding other camparison groups-men versus women, to see whether the medication has different outcomes in each-requires a three- to fourfold increase in the total nun~bera f subjects. If the threshold number of subjects in ala four groups (cxperimentaf versus yiaccho, and w w e n verslks men) is not met, a reliable statistical analysis simply cannot be done. t f tl-rcre are too few subjects in each group, a difference is likely to go urrdetected unless it is hugely obvious, "Tomake matters mnrc complicated, few medications have dramatically different effects in men and women anyway The Food and Drug Administration did not seem especialiy concerned about the issue of subgroup analysis when it was raised in 1987. "The number of docurnen ted g e n d e r - t pharmacological differe~lcesctf clinical consequence is at this time small and conducting formal effectiveness studies to detect them may be difficult, . . . Such studies are tI~er.ct'arenot routinely rrecessal-$V9 And thexi11 lies the real Issue: How can we justi+ the cost of routinely searching for differences that are unlikely to matter! After a14, including morc. stlF?jec@makes far larger, mrlrc expensk studies that take longer to complete. The NIFI would end up funding S;c."iliertotal studies and would thus generate less biomedical knwledgr, The biggest risk is that pr~tentiallyfifesaving therapies will gs untested hccause money is being wasted aamining unimportant rtlatiw diffe~nccs in response to treatment. Back in 1993 the NIFI recogllized these implications of the Icgislatke provision, and the next year it alficialliy ciefineb '%did suhgromp analysis'?to mean an unbiased evaluation that could have "clinical" or "public health significance" rather t h a l ~statistical significanceWqnotl-rer words, it dropped the standard scientific practice. of &$iscounting group differences that arise by chance. Thus, the NIfI is now being Mamed far fdiling to cnforcc a law that wlls ill cctnsidered in the first

place ax-tcl whose requirements were defined (and made a%raitablefor public coxnment in the Fedevak Register) by the institute itself Fortunately, not every stt~ctyhas to be anaiyzed by sex: researchers need a reason to anticipate that nxrr and wornen will respond differexrtly Typically, such infc~rmationwould come from the smaller safety and efficacy trials that prclceclc a Large clinical trial. According to Paul Lekr, a ysychopharmacologist and forrner division head at the FDA, "Almost any disinterested dinkal trials analyst woxtlz his or her sake: would routinely exarmline thc data to determine to what exteMt membership in variotls groups (liar example, sex, age, race) claiztributtld to the positive fi~~di~~g*"gl Moreover, researchers can obtain more precise information about tzrornen's ((and men's) responses et) medications throangh single-sex trials. lf the preliminary safety and efficacy dara or the clinical trial itself suggests a sex difference, researchers should follow up with separate trials for men and women, In fact, that seems to be the direction the NIH has already taken. For example, of the forty-nine trials initiated in 1987 by the National Heart, Lung and Blood Xnstituk at Nlf-1 and reporkd in May 1 !%U3, seven inwlvcd only w m e n , and one involved only men." h If9137 thc NXH had alrnost one thousand single-sex clinical studies in progress, Of rlmose, aver 70pemnt were women-only9" It is not clear haw Congress and the Nlel will resollte the matter of "valid subgroup analysis:' Zjays after the GAO report came out, Senators Tom Harkin (D-IA), Barbara Mikulski @-MD) and Crtyrnpia S n o w (KME) ancl Reyresentativc Henry 1Vdxm;an (D-CA) called far heari~~gs.~jl "JV~llJencontinue to be shortchanged by federal research efforts:' said Snawe." NonetheBess, the story as it has unhlded so far is a classic example of the unerring tendency of so many women's health advocates to view ewf~tsthrough a lens of aggrievcenent and to ignsrc. the nur-rmerarrsadhrerse ccjnsequences of elevating politics over science in sekting research policy,

There 1s Ncs Women's H e a k ~ hCrisis In 1996 Secreeary of Health and Humall Scrvias Donna Shalala said, "\VC arc rapidly approaching the day when worrasn3 heitkfh =search i s not only sitting in the front of the bus-but is heading toward a clinic or hospital

administered equdly by men and wornen.'"qCZihen the secretary made that statement, woruncnk health research was drcady sitting in front and wemen iverc well represented in the ranks of hospital administrators at the Xcvcl of vice presiden~37'Today women have cortsiderable inRut.net. in the medical marketplace. \Vc~men'shealth centers are springing up; in 1999 at least thirty-six hundred prclgrams airclss the country called themselves bvolnen's health centers," There are few comparable cenkrs h r men, Tr, say that r~~ainstreilm medicine itself caters 1.0men cannot be the case since even after thcir childbearing years women visit the doctor more than. men.YVParmaceutical coxnpanies are advertising vigarotlsly to women, thereby increasing the likelihood of an informed consulner and along the way generating competition bctcveen companies that can bcnef i t the consumer by lowering costs and expanding variety. In some specialties wolrzen are in special demandelNUAndat the end of the centrrry 44 percent of the entering class in our medical schools was f e n ~ a I c ~ ~ ~ ~ ~ But some will always portray women as deprived. After all, the women's health lobby and i t s fund-raising apI2aratus rull on the perseption that wcpme1.t haw been slighted in order to benefit mcn.Jo"Thc Society for i%bmenk Health Research, for example, decries the fact that "52 percent of the population rezceivcs barcly 14 percent a f kdera"i1ealth rcsearch f u l ~ d i n g . "Except ~ ~ ~ for the tiny Office of Research on Won~ell's fiealth, ""re ~rho2erest of the NIH is the ~nen's tcliaixns Marianne I'egato, a physician who directs thc Partnership for 14Tomen's Health at the Columbia School of Physicians and S ~ r g e o n s * ~ ~ ~ 4 Apparently, these advocates count only the portion of the NIH budget earmarked for diseases of woIjlen as beneficial to females-nut the great mass of research on human health gencralfy. By that bar{2mctcr, less than 7 percent of funding goes to clinical research on all male diseases. That means at least 93 percent goes to diseases that affect either women or both sexes. Ths, 52 percent of the population (women) benefits from at least 93 percent of the researe11 budget. Pitting the well-being of wuxnen against men is not only petty but, considering that worner3 outlive men by six years, rather absurd, The babf-truths dissexnix~atedby the women$ health ~novcmcntand the righteous indignation it seeks to provoke are not wiZhout h a r m f ~ ~ l

consequences for svomen, Facts taken out o f context (such as women's l ~ > ~ arate ; . r of catheterization) can lead patients to clamor for, and ultimately rcceive, procedures that may cause them more harm than good. After a l , if you were a woman, waulcZ113 you press the doctor fur a test if you were fed t-o believe he was withholding it? This mcnta1i.t). often contaminates the doctor-patient relationship, "JYhen I give lectures on the doctor-patient relationship to physicians, rrlany of the overworked doctors-male and fe~naXe-typically con~xncnton how frustrating it is to deaE wirh -rvr>n.aerIwho come into their office. with an-2 attitude r ~ f'Prove that j-au're nut going ta 'take advantage of me:" 'says Edward BartIett, associate adjunct professor at the George k$TashingtonUniversity School of Public Health.Eij" Assuredly, there is more to know abc~srtthe treatrmmenl of diseases in women. We need to know more, for cxamgle, about the way natural hurmoncs, contracepti\rcs and replacement hormones affect other medications woinen take. Increasingly>there is evide~lcethat pre- and postmenopausal women may metabolize drugs differen.t.ly We need ta know Inore about efficient diagnosis of heart attack and chest pain in wcvomen and to develop better ways to interpret diagnostic tests for chest pain. But it is wrongheaded to confuse the need to know more-an imyeratiw tl3a.t will aiways be with us-with the notion that women arc second-class subjects of medical research.

Crack Moms of South Carolina

olil-ta,in the late 198f"is,doctors and nurses at the Medical lint\rersity of South Carolina wcre begging yrcgnant addicts to get drug treatment. They were sadly falniliar with the drastic effects of potent stimulants like cocaine during the third trimester: rzterinc hemarrhagr, oxygen-dcprid babies, spontaneous abortion and cxtrcmc prcmat-crrity Betweeaa October 1988 and September 1989, 119 pregnant women who came to the Medical University's emergency room were identified as using cocaine. Ten miscarried, and the remaining 109 were still using cocaine at the tirnre o l delivery. Not one went t~ drug treiztment either beb r e or a&er her baby was born,! In the spring sf 1989 a srnall group of kusirated nurses and doctors rnet with Charlcston's police chiet Reuben Greenbelag, and the county solicitor, Charles it$.Condon, w h orould later become state atwrney gcneral. That October they unveiled a policy that aimed to use the force of law to ensure that pregnant wonlen got treatment: a wonlan colltd be arrested and charged with child neglect or delivery of drugs to a lninor if shc was usil-tgdrugs just prior to delivery, tested positive for drugs more than once during the third trirnrester or tested positive during the third Irisnester and subsequently refused or missed an aypointnlent with the substartce abuse or prenatal clinic, Condon appeared in stern public service announcements on TV. "Not only will you live with guilt, you could be arrested:' he warned. "This is a tragedy p u can grcwnt. . . . If -you stay with the [treat-

mentj program, yotx won? be ilrreskd, Wake up &on1 the nightmare, Think about your baby first."'" The get-tough policy soon sho\nred signs of success, '"fheincidence of cocaine-positive urine screens among pregnant women corning to the emergency room dropped dramatically after the restrictive policy was in~plcmcnted,from more. than twenty per wzonth to five or six, according to a report in the Jourrtal o l rhc Soutll Cnroiirlu Medical Association. DeIi\?criesat the institution did not dccfit~efollowing i m p l c x n e t t of the p~licy~-S 'The MeJicaX University's drug testing policy drew fire. 7'he Genter fc~r&productive Law iind Policy in New York C3ity condemned the Sorzth Carolina program as an excuse CO "punish women far their behavior during pregna1lcy."4 Catherine Christo~~h illis, a state y rosecu tor who helped craft and enforce the child protection effort, was personally targeted. "The ACLU,women's rights activists and local defense attorneys came after me, 1 was a terrorist, a Nazi, the pregnancy poiice. 'l'ktey said babies would be barn dead in the streets of Scsttth C:aroXina because women would be tao afitaid to go thc Erospitat,"-" ShirXcy Bro.il;~n,the obstetrical nrrrsc who helped organize the meetixig with Gxeeherg and Candon, received death tl-nrcats.6 A~i\?ocatesfor the pregnant addicts assailed the Charlcston plan. M i l e I too saw no need to arrest and incarcerate women, the innposilro~l of drug testing and treatment requirements, as we will see, is often critical, Et the advocates insisted that acldicts didn't reed to be cc~crceeiiinto treatment ~ v i t hthreats. "The true crisis" is lack of treatment, according siF I'ynn M.Paltmw of the Ccntsr for Reproductive Eiwv and F"slicy.7 If thcre were only more treatment programs available, she said, the problem would be salved: drug-addicted pregnant wonten would Rock to them. Paitrow was half right: as continues to be true in most places, Charleston did not have enough prograrns (residential prograrns specificaliy) for pregnant women and women with young children. But she and her activist colleagues are dead Lvrong about the need for leverage if many addicts are to belletit from treatment. The substance abuse treatment sys-

tern has tong recognized the virtues of coercion, ""Legalreferral to treatlnent is a consistent predictor of succcss:'says Georgc De Leon of the National Drug Research Institute in New Ifark City and a world-rcnwnccl expert in drug teatmeant,"" The Medical University of Soutfi (Samlina was fotleawing a uscf~tltradition of applying leverage 10 change destructive behavior. But the war waged against the Medical University, first by women's rights and civil Liberties ad\rc~catesand then by the Ecderal grtwrnment, is the story of how a campaign for victim rights competed with the hospital's clinical imperative to treat addicted mothers-to-be, defend the health of the near-term fetras and protect the mother-newborn relationship,

In 1993 the Gcntcr for Reproductive L i i and ~ Policy filed a 53 ntil4ion class action suit against the city of Charleston un behalf of ten women who were drug-tested.' The defendants included the Medical Unik~ersity,solne nurses and doctors and the solicitor" office, Thc allcgaticrns included violation of ehc: womerz's privacy and rcpradut-tive rights and fiecatlsc eight of the woillen tested were black) racial discrimination. By 1994 the Office of Chil Rights in the Dcgartmcx-teof Health and Human Services had cntered the picture. It threatened to kvithhuld the Medical University" federal funding, a total of 60 percent of its budget, unless it abandoned its policy. F%?arningthat thc program violated Tide V l of the Civil Rights Act (the iw prohibiting discrijnination in federally funded institutions), the Office o f CXil Rights tatd the hospital that "it is the gowmmentk sobiigation to ensure that Fcdcral funds do not support a program which discrimir-iates:"l"" 117 the words of Doruthy E. Koberts of Flirlgers School of Law at Newark, the "khoicc of a punititie Rsponse perpetuates the historical devaluation. of Black wcjmen as mothers? I t Czhief Grcsenberg, who is black, fortnd the charges of devaluation and I'd ccollrsider it discrin-tinatior~ludicrous. ""Punishment? Discri~nit~ation? discriminatory if tliley didn? ggu out of their way to save these black ba~ X G S , " he told me when X visited Charleston, ""The doctors and nurses

wanted to Ievel the playing field fc,r these unborn babies, at least during time Last three montl-asbefore they were born,"' he cantinucd. ""They wanted to give them the same chances as a, kid ivit1-nmiddle-dass white p a r e ~ ~ t s ~ " ~ Frorn a logistical srandpoint it is no surprise thai most of the women were poor and black, The MedicaI hinivcrsity was the only local institution that offered obstetrical care to the pedominantty black indigent popufation, the population inz which crack use happened to be concentrated, Judge C:. FVeston I-louck of the U.Se District Court in South izaroiina ruled in t 997 that tbcre was no basis b r thc acctxsatiiun uf racial discri1~inatir3rn.i.~ "The evidel~cepresenkd by the defendants slaotvs that whenever a llatient presented with c.rne of thc criteria Ifor testing], they w r e tested. There is no evidence that the criteria were applied strbjcctiveXy9""Huuck wrote. He also nofed that a ""substrzntia2 majority of the pliaintiffs stopped abusing cocaine," perhaps as a mnscqtlcrzcc of the very policy they were chaltenging in tour-IS But I-iouck's ruling came too late. In 1994 hospital administrators felt that they had no choice but to close the program, After the R.lcdicaZ Uniwrsity susgcndcd its d r - h r g - t e s t i n g - w i t h - ~ ~ n s e ~ ~poficy, ~ ~ e n the ~ : e ~state chdb protection agency was still brought in on cases of poknGaf child endangerment, but police were not notified if the noth her was uncooperative. A toothless policy was just fine with Prokssor h1ary Faith Marshall, director of the Prograxn in Uioethics at the Medical Universit); who had objected to the progratn all along. Testifying in 1998 at a U.S. House of Reyresentati~~es hearing on substance abuse and pregnancy, she dis~nissed the assumption that a woman avhs uses crack is unfit to be a noth her> arad anyii): she said, restrictions on p ~ g n a ntvorrmen t constitute sex discri~nination. "The symbol of tbc anti-motfacr is easily c x p l o i ~ dby political opp~rtalslistswho trade on myth, symbol and fear to further their political agenda," she declared. Marshall also condemned society's "moral judg~ncnt;kla~m about substance abase,"bi Even sotne physicians talk abo~ltaddiction usirlg the vocabulary of victinahood, Stephen R, Kanda13, chief of neunatalogy at Beth Israel Medical: Ccnter in New b r k , pronounces drug abuse to be the "result of manipulatirttl by the media, inqpropriatr over-medication by physicians, or

[addicts'] own atte~l-rptsto cope with social barriers to achieving equality and seiif-h1b-ilmenttIt1 He adds, "Mthough women wirh ccanomic and family support c m mask their addiction, however tragic their circumstances, substance-abusing women are united in a, punishing sisterhood whose hunnan costs are inesti~na!~!e."~~ In their 1994 documentary film Women of Substance: The Sfr~~ggIes a r ~ dTriumphs of' Miornen Addicts Seeking Twutrne~t,Rory Kennedy and Robin Smith portray women in a residential treatmctlt program, IVc watch long segments of the women sitting in group therapy, talking about their feelings and hugging and crying. I assrtlxi: these women were required to fioId jobs or complete GEDs---t13at5s what most goad programs expect-but the message that k\bn.rer~qf Srnbshri.tzcc7 conveys is unmistrakable: these wonlerr are victirns of a disease. "They take drisgs to medicate thern~clves,'~ B~arryZuckcrman, chairman of pediatrics at Boston City Hospital, says in thc film, '3Idon" tehnk it is any different than me taking a beex'hafter a hard day. The film also cast a disapproving Book at the South C:arcrlina siettation. "We can no longer afford to be angry and punitive:' says the narrator, tlne actress joclnne 14'a~dward.'"There are too rl-rany lives at stake,'"3"h.e fidEsc-choice rhetoric---"treatrnc12t9 yes, punishment, no3"is the mantra of advocates who reh'ust to ack~~orrledge that serious addiction freajuentjy requib-es the qylication of coercion if the 13alient is to get better, Francine Feinberg is the executive director of Meta Housc, a residential treatment program in Milwaukce. In 1998 she told a subcomrnittee of the House Gok~ernmentalAffairs and Oversight Committee: ""Punitive measures ignwe the root causes of addiction for so many women-sexua! abuse and battering-during which wolrzcn are victimized h n i t i v e aypraazhes such as these make these women victi~ns againlV~"0ynnnM,Paltrow of the Center for Reproductive f,aw and Policy toid Te$ b p p c t on ABC's Nightiitlc, "Er,7crytrodyk sready is call these women selfish, kvhert the real yroblent is that they are not selfisli enough:' Though they expose their unborn children to potentially dangerous substances, Paltrow reasons, the ones harmed ""first and foremust 1arc j tl~en~sclves,"~~

'The fen~inists'preoccupation with the mother at the apense OF the near-term child is not new, Jzdia Sn~ithAndre was a woman with a mctabolic disorder known as phenylkctonuria. She was a%varethat she neecicd to be on a restrictive diet during pregnancy to avoid subjecting her fetus to a high probability of mental retardation. She refused to follow dietary restrictio~lsand, as her doctors expected, gigve birth to a yrcpbuncbly rctarded child. Mere is how the bioethicist Mary Briody hfahowald of the I-inilrersit): of Chicago rationalizes Andre" actions ~rsitlg'Yeminist standpoint theory": Patients generally betong to the non-dun-tinant grotlp tc? whom privilcgc stdtus nlay be imputed bccausc the rccommerzdaticsns that cover their care are governed by tlze dc~minarrtgroup, . . . Grar~ting privilegecl status to [Andre"] decision regarding diet control and xrredicdt il~terventionsduring yregnr-lncy is supported by fclminist standpoitlt theory. . . . So 9oa1g as the impact of her decision does ncjt disprrzportionalety burden others, an egalitarian view of fcmiaxism further supports l ~ e decisi~)n.[~ r

The Andre case is f ~ ~OP l llegal land mines, to be sure, Rut in condoning her behavior on ethical grounds, Mahowald joins the ranks of &farshall, Paitrow and the feminist-legal establishment, at1 of whom put rime rights of the autc-3nnmousmothcr---autonomous in "chat she has the yowcr to determine the hcahk of her newborn-~tbasve those of the nearterm fetus, tvho is utterly helpless*'"6liearly the standpoint o f the person most affected is crucial to this assessmlent? Mal-rowald asserts, rcfcrring to Andrc, not her brain-damaged chiM, as the ""pcrson most affectcdP'~

Harm Reduction or Harm Prodzkctz"~7n?? Another advclcacy group assailing the lM~dic~tf University of S o u h Carolina was the Lindeslnith C:enter in New YorKit);. Eindesmitk has Iong been a proponent oEaharm reduction:' the philosophy that drug abuse is inevitable and that society sharalck t h c ~ f o r ctry to minimix the damage

that addicts do to thenz~sekes,As defined by the Harm Iteduction Coalition, which is based in QaMrand, Califc~l-nid,karnl reductiot2 "meets uscrs ivher-c they are at . . . accepting, for better or worse, that drug use is part of our woddP"1 This acceptance of drug use has reached its zenith in the Netkerlanciis, where addicts hwe forsned a union callled the Federatio~msf13utch Junkie T.eagues, which lobbies the government for selavices such as housing, health benefits and wetfare paynzents. Addict activists and their supporters say that drug abuse is a huar?;zn right and the government has a respnsibility ta mttke i t safer to be an addict, In the United States needle exchange programs are the most familiar example of I-rarrn reduction. The programs may make somc impact when they help ellroll addicts in treatrrlent programs and, in the ixlkerim, rsquire that addicts bring back used needles and exchange thekn for the same number of clean ones. However, in many cities addicts are simply given handhfs af clean racedies, a t no cost and with no expectation that they wilt quit using or enter drug trcatmcr~t~ In 19% BaZtimarek ccommissioncr of hcalth proposed going a step further and administering heroin, at taxpayer expense, to addicts, I-3e was insyired by govemnrent- run y rograars in Australia, Switzerland and the Netherlands, which do just that. Whether puMic f~~i-tnds should support ~ b t s eefforts is another debate, but tfic idea that addicts represent a class of' oppressed citizens is partic~~larly ironic. Aftcr all, it is generally their own failure to control their drug use-resulting in addiction, accidents, arrest, job loss and so on-that Icads to their "oppression:' That the collsequences of drug addiction arc to be accorrtmodated by a ""nunjtrdgmental" "society becomes chilling ~ r h c nchildrcl~arc involved, "kfothcr Dug,'" the nom de plume of a drug-abusing mother, has a regular column in the Harm Redlrrtion Coolitiorr Conrnirrnicntiorr. She describes her colkrmll as a h r u m a n L c p a r ~ a t i ~ and ~ gpl-cviews " such ropics ar; "what to tell your child when they ask about your lifestyle ('Mommy, how come all )~OUYfriends come over at 3:00 p t , ~ , ? ' ) ) , money managenlent issues for parents who use drugs, and how to deal with a child that is using [drugs] or has begun to ask questions" about them.

Mother Dog contir~ues: As a single ~nibtltlsrof two,parentia~gis a subject csf great imptrrtance t o rime, . . . hfy drug of cbolce for tile last 15 yedrs hiis been speccl by injection. . . . [We live] in abject poverty. Tl~ercare very few resources available to me as a r-r-rotherin my situation and particularly ds a rnclltlrer who uses drugs--other than the many drug dealers i1.t the neighborhnctd [who] anonylmous4y deliver cic~thilag, food arrd rr~cdicalsupplies to nay doorstep. I decided to start tX~is cttlumn so that other parents in similar situations can come together and share ideas and infclrrl-zation,discuss triurnphs and challenges and en2ptrIver one anclther i n our yarentialg and ira our lives*

Later: Mother IIog laments that she has "few if any positive role models" and that she suffers from "stigmatization and negative labeling."" 'To be fair; most critics of the South Carolina pcllicy do ntrt regard the use of crack and heroin as an izcceptahle altematke Lifestyle, but at bettom

they share a ph2osopkical kinship with Mother Bog. They sec the drugusing mother as the victi~nand the child as a bit piayer in the clrama, one whose ir~temstsmay be sacrificed to the naother's autono~nyThey want to spare the mother the burden of pl-csvkg that she is a fir parent. And if she turns out to be incompetent, they reason, it is the responsibility of social sevvice agencies to catch her fdiling at it.

Nolv Bad Is Crack for Babies? Critics of the hfedicdl Ciniversiv of Sauth Caraliraa are quid; tcc remind u s that crack's effect on children is not as dire as once karcd, Follow-up studies of "crack babies" have indeed failed to idelltify the horribly brain-darnaged cohort o f $erto children predicced in the 1980s. Furthermore, standics that did find developmental problems neglected to control for the mothers' use of other substances desrkg p r e g ~ alcohole and for Lack of prenatal care, untreated wnrreal disease and poor Ilourishmcnt." 20 be sure, crack use could have created or exacerbated the violence, alcohol consl1~11ytion, cfjsru1)tion and disease in the women's

lives, but it is almost impassible to disentangle the prenatal effects of co~ i s c in the caine horn that of all the olher kctf~rsh a t can c o m p r c ~ ~ ~babies womb and doam them to a stunted incaacy and troubled chddhoc3d. Xm the nzid-1990s better studies began to appear, They docurraent-ed that while premrrtal crack exposure per se did not lead to severe mental deficits and uncolltrollable bchavior, as originalliy b r e d , cocaine did have a discernible, if srahtle, eflect or1 the central rzerwus system in many cfxi1drcr~.A con~prehcnsiwanaiysis of the data was conducted By Barry Idester> a 13rowr-r University psychologist, and his collcagues. They reviewed t B1 published studies that used ot9jcc-tiw measures of tsch~~viior and cognition and employed a control group to account for the numerorxs additional risk factors common ts cocaine-using motl-rers. Most of the stucfies were condracted.Mritlz infants arad yreschoslers. The eight studies condlscfed on school-age chiiict~n~vea1c.ddeficits in XQ and language." Childre11 whose mothers used cocaine had IQs measuring about three points lower than those of the control children. This is not a big numerical diffe~nce,but. it takes on new n~eaningwhen placed in context. For children growing up in poverty, the average IQ is ten to fifteen points or Inare below the norm of 100 withorat brtrgs. "For these ckildrcrz,'%cskr says, ""thrcc points can, make the difference between normal and ahnsrmal [because) even srxa2l differences that do not start out as abnorz~zalities could becorne ab~~ormalities if exaggerated by environmental factors:'l" In an article in Scl'irtzcc, the aa-rthursextmyohte from the total nmmber of cocaine-expose infants born annually to a cast cstimaic of more than $100 rnillion per year for special education to address their learning and language problems. 1x1 a six-yclar Xongitudir~alstudy uf 425 irmer-city children beginning at birth, Ltnda Ma)ic.s,a Yale: psychiatrkt, reports that at age four and a half the cocaine-exposed children bad movc trorrble focusing and blocking out distractions and were more impulsive than peers with otbcrvvise similar backgmunds,'" (:rack c a c a i ~ ~carries e especialiy pernicious obstetrical risks. Unlike alcohol and other substances, legal and illegal, which can produce birth defects by derailing fetal developlnent during the iirst thrcc months, cocaine exerts much of its most devastating damage in the third trimester. A stimulant, cocaine can cause premature labor by prccipiuting uterine

contractions-indc@ci, it is common street wisdom that cocaialc can help a wonlan induce absrdon, Cocaine is absorbed into the fetus's circuEattlry system and cor~strictsblood vesscrls, which can lead to stroke in the fetus. Through surges in blood pressure, cocaine can cause the placenta to detach from the wall of the uterus, resulting in life-threatening helnorrhage ta both the baby and the mother, This complication, called placental abruption, occurs in about 1 percent of the general obstetrical population but may reach 15 percent in cocaine abusers,"" Haw many MTomelr arid babiilis are at risk for thcsl: problcrns3stimates range widely f r o ~ na IOW of 45,06)Cr per year ta 375,000. The lower number; derived from the federal National Pregnancy t3eal.t.h Studg: is based on self--reporting and thus is probably an underestimation. The higher rrcrmher is from hospital medical razcords of babies "oor with cocaine in their systems, but these hospilal; bvere in areas of hea-crdrug use, An. accurate i?ltlmberis somewhere in "cttwcen, It is true that rnost babies of cocaine-using mothers are born normal, but the real problem is that their odds of stayir~ghealthyyplaysically and psychologically, diminish precipitously after birth. "l'hc crack baby problem is basically a pediatric one;""explains Hardcl Poflack of the University of Michigan School of Public Health. "Most pregnant women who use drugs will have basically hei-rltl2i-b): babies, The issue is &at they can? take care of them when they get home, That's why yzediatricians generally take a sonlewhxt hiider line on a substance abusing wowaan than other health care yrraveders.'"Vfndced, yediatrizians realize that the harm to which chronic cocaine-using mothers subject their children arises out of behaviors that did not begin with pregnancy and will not end with dclixry. That is why all state?;=quire physicians to report suspected child abuse, some even holding them liable for faaure to report or susylect the abuse.

When Drug Addicts Have Children One shoulcln't make the leap, the bioedlisist Mary Faith Marshal! told a reporter, that ""bccuse a woman is a sanbtailce abuse%she is, therefore, a bad m ~ t h e r . " ~ W ~ hDog, e r the newsletter columnist, would agree with Marshall, but ample data cox^rtr.adicttlaem.

Clddren whose parents abuse drugs and alcohoi are over four times more likely to bc neglected than children with ssbcr parents.29 Forty percent of confimed cases of cltih.3 nlaltrrat~nnentinwlw the use of alcohol or other drugs.30

Childre11exposed yrenatall;v to illicit drugs are two to three times as likely to "a>e abused or neglected as those who were llst*3' Cascs involving parcntafi drug addiction are characterized by repeated reports frol-n welfare agencics.3"

Eurtherme~re,parental neglect often leads to sexual and ph;usicaii abuse by other ad-exl&such as the mother's boyfriends. hr-ents teaw their infants and children unattended whell they go out to find drugs or sequester themselves in the bathmonl or in their car to get high During tiisose tixnes when p a ~ n t arc s not arc)ur-id to pl-otece them, childrcn miiy be molested,-?' Stiff, t w ~ n c J.e Xelson, thc ethicist-lahyn; insists that the cjzild \vei&rc sptcm ""oul;ht not to assulzlle that [aU drug-usingj rnothers are unfit?"& Judy Howard of the IJC1.A School of Medicine, who ran an outpatient treatment prograna, found that cvcry one of the ir~fdntswhose mothers did not cease drug use durirag the course o f a fifteen-rrronth observation period "showed insecure attachment demonstrated by a variety of behav-ivrs including avoidance, kcir and anger toward their inorhers," She adds, "Such an extraordinarily high percentage of insecure attachments has only been previously seen in abused and neglected childrenfJ"~y comparison, a lowcr, albeit still discouraging, 30 percent of children of poor mothers who did 1101 use drugs dishslayed weak bonding, Even mothers who wish fo protect their chiidrcn are often disturbingly naive, One acldict told researcl.xers that when "she had a hit of crack, she'd just take another vitamin pill, figuring this would balarlce out the effect of the hit." Another told them that she ~voufdeat a Xot of ~rti~zitc bl-ead befc~resmoking crack. " h u know, like b"k[onderBread,'" she said, ""I figured all that bread would stop up the passage through the umbilical cord so the crack wouldn'1 get through to the bat3y.'"""

Many experts urge that childrcl~be removed from the home if their parents continue to abuse drugs. "On thcir own, most true addicts simply cannot take adeytrate care uf their children..FVitlrrout:sucietaf ittterxntion, their children are condexnned to lives of sewre deprivation and, often, violent assault:' writes Douglas J. Besharov, a child welfare specialist at the American Enlterprise I1zstitbttcs.~7In his book lf%lhenDrug ~4ddict,cHrlve ChiEd~ra,he conrpies the views of more than two d ~ z e nresearchers, dinicians, program administrators and government officials." They are nearly unanimous in calling for rapid termination of parental rights if substance abuse conti~zues, In interviews with more than nine hundred child welfare prclkssionals, thc researchers at Columbia binivi,rsify found that 82 perccl2t bclieve t41at repeated abuse should prolrzyt termination of parental rights.3" Given the popularity of family preservation among social service ivorkts, this regrescnts a profound shift in attimcte, The report carmzludcs that abused or ~leglectedchildren should be removed from the home for permanerlt adoption if parents who mistreat them fail to engage in treatment and to stop usifig drugs. 'Those advocates ' O Y ~ insist O that addicts are fit enough to be parents abruptly change their rnil~dsabout the limits of cotnpetence when it suits their political message, Gnsider the decision that Barbara klarris of Scanton, Galihrnia, places befarc. thein. Harris offers addicted wsrrrren $200 if they wit1 undergo sterilization (which C O U 1~36~a reversible tubal ligatioarn) or $50 if they will obtain sustained-release hormonal birth control, l&c Depo-Provera, \*rhich lasts three months, or Norplant, which lasts five years, Hcr organization, CRACK (Children kyuiring a Caring Kommur~ity),was startcd in 1994 anci is finallccd by private donations. 1-larris2sprogram has been harshly criticized by the ACLU and PIallned hrentj-rood, ""Thc essence of this campaign is profound hatred i3galnst poor people:" says Ethcl Long-Scott of the Wozncn's Economic Agenda PrQje3ct.a CfQACK3s practices are unethical, Long-Scott arid others contend, bccause the w m e n , lured by rmoney or addled by drugs, cannot truly give inhrmed consent. If that jverc ss, wlty is it that these critics consider the women sufficiently equipped to raise a child?

As of thc sumi-ncr of 1999, Ir-larrishad paid 57 w m e n who had been pregnant a total of 423 times, "Thcy had 161 abortions and gave birth 252 times:Warris told the iVew York Ernes." """Forty of those babies died and 175 are in hstet- care,"' Harris, who is white, shrugs off charges that her Ixogram is racist because the billboards announcing hcr offer ("If you are addicted to drugs---get birth control--get $200") are located prinlarily in rninority neighhorhoods in Florida, Minnesota and Illinois. "Don't minority babies matter?" she asked What's more, nearly half of the women she has paid are white. HarrisS own husband is black, as are the four children the couple adopted from the same crack-using woman. "Here's this irresponsible woman iva1king around having lirabics ycady . . . and she has no intention of raising them: Harris said of the xrrotber of her adopted kids, a woman who personifies the individual CRACK wants to reach.

The M y t h of the Willing Lightbulb The doctors and nurses at the Medical Uni\?crsity of South Carolina did not embrace the harm reduction ghilasupj~y,nor did they see value in thinking of women as victims. It was better to view them as patients who could improve with treatmc'nf eve11 if that. treatment had to be imposed on them The idea that patkeats can do well with itreament even if they don't tvant it does not jibe with popular understanding, whicl~is we11 cap-tured by the hrn-milik~r joke: How many psychi&rists does it take 1.0 change a lightbulb? Answer: Only one, Gut the bulb has to want to chmge, Many cdilaic-iansbeliew, mistakenly);;, that a patient must desire drug treatment in order to benefit Eran1 it, that shc ~ n u s first t "hit bc~ttonl""and that she rnust want to undertake treatlnent far herself ancl not because of any outside pressure. But: addicts are notoriously poor self-disciplinarians. Most are ext ~ m e l yarnbivalez~tabouf g i ~ ~ i nupg drugs, in spite of all the darnage that drugs have caused them. Addicts' problems of self-governance demand that a rehabilitative regime include limit-setting, consistency and sometimes physical containment. Paula Keller's experience captures this well.

"When il ran an outpatient program? she tells me, ''only two women in four years silowed LE^ voluntarily Onc of them dropped out after one week and the other lastecf. three weeks,'" Most addicts admit that they were pressrrred into treatxrzent by external forces such as employment demands, social relationships or financial conflicts, Only a small minority of addicts in treatment enrolled solely 01s their own personal initiative, unpressured by cothers.4 Women in a focus group sponsored by the General hccounting Office noted that, ""athough they Fvere forced into ircatmcnt by the state, once in twatment thcy gradually grew more rcccgti\re to the messages until thcy Gnally reached the point of seeking and accepting responsibility for their recovery:'l4 Coercion helped ilpfalissa Ann CrawIe): of Anderson, South Cawlina. fn I991 Crawley and her newborn son, Antwon, tested posiricre for cocaine, She was charged with unlawful r~eglectthree weeks fater, pleaded guilty and was given a five-year suspended sentence. Crawley was placed on probation, a condition of which was participation in drug treatment. During (:riawley$ probation her counsektr reported that she had frequent positive urines. Thc next year CrawZcy gave birth to a girl. Mother and daughter tested positive for cocaine, and Crawley was again indicted on a charge of unlawful neglect. A judge dismissed the charge, but Crawlcy was soon in trouble agai1-r for attacking her drug-dealer boyfriend with a kx~ife,a violalion of prcrbation. It was only after her probation was ~ v o k e dbecause of the knikwielding incident and shc Fdcecf jail time that Crawley stopped using drugs. She finally landed in jail in 1998 for the violation and serkred several nnurrths, But ol-rce released, she rcentered the community drug-free and cmplioycci. Both her AGLU lawyer and Bob L-lcrbert, the New York- Tiurres colurnnist, csllcietnrzcd the ""crack ~nczm"policb as it has bcen called, fbr r;rktintg (Jrawley-\vhosc parentkg skills they praised-away f'rorn her children,d' But the South Garoiii~~a prosecutor Catherine Christctphillis has a different appraisal. "After giving birth to two cocaine babies, testing positive on virtually every drug icst subsequent to her initial arrest, and breaking probation by knifing a known drug dealer, she successfully kicked the habit only *

Crack inkloms of Soutbr. Caradinn

when told that she &ced a jail sentence because sf her repeated offenses:" Christophillis says. "It is ironic that Maiissa Crawiey, %.hose case has been cited as an cxamplc of the program's inhkrmaaiy* is tl-ae best example 1 know of its s u ~ e e s s , ' ~ ~ ~ h a m my own experience treating drug addicts, I: know h0-w hetpfuk csuasidr: coercion can be in making treatment work, The. yatienlr and I do not have to waste time bagaining over how many drug tests she can fail bef0l-c she -pays eke conscyuertes. I, bs not haye to risk straining the treatmerit rciiationsbip, since X" n o t thc one who makes up and cntrorccs thc rules, Instead, with externally imposed limits and exgjectations, 1 am the patient's ally. We work together to develop strategies to resist temptation because we both know there are consequences for FdiXint;, but the ultimate goal is to discover Larger Peasorls to stay clean, What are some o f these larger rcasons~aamily,work, respect, aeitcsno~xy* Here Ss what my patiet~ts tell ine, AN~;ELAR,: I want to have rny dlifdrcn respect nme again, They Eclilow that when I said: "Mommy has to go ta the store," car>"R4onmy will be in the bathroom for a while:' that k was getting high, I was f o o t i ~ ~myself g tt:, think tlrey disl1-r" ~ I I U M ~And , now nny own authority with then2 is shrjt*How can I expect then1 to be honest wit11 nlc and gct tltern to listen when 1 tell tXscrn xmot to bc r t ~ ~ ~ n i n g the streets?

]osx:r)n S,:I want my own place, my own things..Some privacy it's been twca years in and cairt tzf shelters or sleeping on friends' couches crr OXtlors. I'm sick csf that, I warlt to have a place where my daughter can coEle and visit me and it's snok huli~iliatilzgfor both of us that her ktfier has nothing to show for I~irnself.

YI'ONNE E: X want to go to art srhooli, And in my spare tinze X want to keep ~vorking0x1 the tattoo dcsig-t~s I%vc xnadc, For a while I WGIS laecomlng a really yrspular skin artiscin New Orleans, but then f had et) seEk my ecluiprnent when f: started using t1entir.t. again. I tvarat "E nmke enough aasonegr "ibp~pythe eqrxiprr~cntagain, I23 Love to get a degree in fine arts, Painting is my passittn. T can bring yr~usome photcas next week if you wallt to see pictures of my wtxk.

545

No rnatter bow much treatment we provide, soar~eaddicts simply will not taltc advantage of it. The good news is $hat data consistently sho~vthat treatment, wftett mmpieted is quite effcckix in achieving abstillence, Thase ~ 1 1 0Jc)enter a program voluntarily rarely complete it; about half drop out in the first three months, and 80 to 90 percent have left by the end of the first year. Among such dropouts, relapse within a yean: is the rule.4' Numerous studies dealnnstrate that addicts who get *eatmew through court order or employer lnandates benefit as much as, and sometimes murc" than, their counkrparts who enter treatment vo1untari8yeThis is because time): are less iikcly to drop out of treatment, accordkg to a report from the %\IationalInstitute on Drug Addicdon titled "'Treatment for Dmg-Eqosed 'tVomen and FI'heir Childrenl'" h~naxle large-santple study, Barbara &ex at Mclear-r Hospital in Boston exarnirled data for five hundred women mandated to treatment by a civil judge sf Massachusctas in 1995. The cornrnitted group stayed in treatment an average of four ti~nes longer than a demographically similar group af women wko Mrerc voluntarily admitt~d.4~ 'The reason sanctions and incentives can WO& is that the compulsion to take drugs does not necessarily donlinate an addict's minute-to-minute car even day-to-day cxistcnce, Mrnost aXf addicts are capable of rsflection and purposeful behmicbr far some, perhaps a good deaf, of the time. f9uring the course of a heroin addict's day she may feel calrn and her thoughts may be lucid so long as she is confident of access to drugs and she is rasing them in doses adequate to prevent withdrawaj but not large enough to be sedating. L i k ~ r i s ethere ~ are priods la a cocaine addict's week when she is neither engaged in a binge nor racked with intense cravillg for the drug. At these nraments slrt is not contdled by a ""c!arsnic and relapsing brain diseasey'-thc medical nlanera introduced in the mid-19Ws by the federal Nationat Institute on Drug Abuse-and she might even choose to cl-tange her behavior, depending on what is at stake, This potential for self-antral permits society to entertain and enforce expectations of addicts that would aewr be possible for sulxcone who had a real c h r ~ l l i cand relapsing brain disease-for exatnple, multi-

plc sclerosis, epilepsy or schizop&lrcnia. IbiIaking such denlands is, of course, no guarantee that they will be met. But the legitimacy of such denzallds would encourage a range of policy and therapeutic options, using consequerlces and coercion, that are incompatible with the idea o f a nof;duXt brain disease. A major proble~xwith ~oercivepolicies is a shortage of treatment progranas in which to place addicts, For liability reasons, sorne programs wiEl not accept pregnitnt woxnen, O n e the child is born, Inany residential programs will not allow thc child to stay with the mother., 7"hc policy of some programs to adlow only one child is beercr; of course, but still poses an; obstacle far won~enwho do not have reliable relatives with wq?c)m to Icavc their oEdcr chadren. Months in a residential program away from aEI or ssrne uC their children can be so distracting ru sonne \%ramerias to jeogardize their treatment. Moreo~ref;it is hest to have the childrer~present so that thc mother can stxngthera fdmily bonds. "I'htzs, adequate txatnlent capacity is a very important matter, but the claim by women's advocates that the only "true crisis" of the crack-1130th~~-and-baby saga is a Laclr of treatmcnt is a dal~geroushalf-truth.

The Deterrence Debate Once sorraeone who abuses drugs is under the surveillance of the social service or crimnir~afjustia agencies, it becomes casicr to apply lek~erage, Sanctions and incentives can be define4 and compliance ~vithtrc'atnlent can be nerseen, Ideally, of course, a woalan decides that she wants treatment and yarticipaks wluntarily But what about the pregnant woman who is too afraid to seek help because she fears that simply shc~wingup at a clinic wit1 get her reported to anthr>ritics? The risk that pregnant women may be deterred from seeking prenatal care or substance abuse treatment if they fear being arxstcd or losing clrstody o f their children is a logical corncern of policy proporlexlts and critics aliikl,s"TThe Center for Reproducti.c.r.Law and Policy cites s-errve).s of women who said that fear of being arrested or losing their children, and even a reluctance to be scolded by doctors and nurses, were barriers to

seelcing treatment. ?%hrse claims, ho~verrcl;must be taken with a grain of salt, Any recoxred addict will tell p u that his ambivalence about giving up drugs or alcohol was once so great that virtuaily any excuse to fc~rgo drug treatment-from bad weather to a headadlpe--evorbXd have been sufficient "reason" not to get help that day. The only evidence of avoidance that 1 cau2d locate was a f 995) report froln the Gerleral Accounting Office stating that "hospital officials told us that some women are now delivering their infdnts at hotme in order to pmvent the state frorn discovering thcir drug use:' The (;A0 report, while anccdotaf, is a matter sf concern. Forkuna$el~< hard data from the S O U ~ ~ I Carolina Department of Health and Envirc3nmental Control JBHEC) Kveal a more sanguine pict~rtl.'~ in eharlcstcpn and C ~ e n v i l t cthe fraction of live births occurring outside the hospital among aII minority wtl;.l.rer-t actually diminished somewhat from 1989 to 1994 (the years when the Medical u ~ ~ k c r s iof t y South Carolina policy was in place). In Ghadeston out-of-kospitall births totaled 1.4 Wrcent in /989,2 percent in 1890, arad less than I percem in the remaining years. Creenville "ixd 1.3 percent out~Ghsspitalb i r t h sin '1989,and icss than 1 percent thexaher. 'Thus, women were nst. having their babies in the streets, as had been feared. Nor did tbcy stay a ~ ~ from a y prenatal care. In fact, ~msstof the 119 waxnen seen in the emergency room cvere not deterred from obtaining prenatal care; they never sought it irr the firs1 place*" h~n 1989 roughly 5 percent of all lninority women in Charleston failed to get prenatal rare. The next year the percentage was 5.5, and thereafier it hovered around 3. In Grernville as well, about 4 percellt of rninority women had no prenatal care in 19tS9; s-crhscqerendyi t was about 3 percent (DI-IEC data). 'Fhe Czharleston experience is mmir.liscent of the exannplc of mandatory HIV reporting. As of November 1, 1999, thiry-four states had implemented a system o f name-based reporting of 131'1' infection. Rightly, the question of ~vhetherthis practice affected individuals' wiiihgness to seek testirlg and care was examined by the Ceilters for Disease Control. Afer looking at whether HXV testing patterns changed aftcr reporting policies went into effect, the agency canctmded that it has no such cffect.5' In one n i n e - s t a ~saxwey the CDG intervie~vedroughly t~renty-threebun-

dred. untested but at-risk individuails and asked why they had not yet been tested for HIv The most common reply---given by 25 percent of the samplc-was fear of learning they were pasitive, By co17tra~f)only 2 percent said that havirrg their name reported was the primary reason Eor avoiding the testP "This does not prove, of:course, that in South Camti~lasame women did not stay away from a prenatal clinic because of the risk of being reported- Similarly, there may he mothers who don't b r i ~ their g abused rhiXdren to the pediatrician for fear of being reported. Hut to my knowledge, there is little published information on whether ur not fewer pregnant women actually sought care in the wake of more restrictive policies. One survey of ten haspirats across the country found that 29 ta 70 perccllt of women usix~gdrugs did not gel: adequate prenatal care, depending wn the hospital, csznpat-cd with 8 to 35 percent who did not use drugs: it is sin3.ply not a priority for most wolnen who are heavy drug users.55 Asking women, as surveys do, whether, in principle, they would stay away from treatment if they c o ~ d dbe prosecued and jailed for using drugs is irrelevant to current practice, Sout11 Carolina and other states impose only conrplrlsory treatment, not criminai penalties and Incarceration, and do s;ct only after se~reralattempts to bccctme drug-free hwe fazed, Not surprisingly, ofhcials like Wifliam ), Domina uf the district attorney's office in FVauksha Ccnurrty, Wisconsin, are fiustrateci with the ad\locaks, "By continually mischaracterizing the Wisconsin law [fbr compulsory treatment] the e x t ~ m i s t sspreacl the fear they criticize the law Pur generating:Wr. Domina says-56 At Leigh Beasley's clinic in Pickens County, in a hardscrabble part of ~-torthwestcmSourh Czarolina, there scems to be littic proble1.n with deterrence. The data even silggest that being held responsible may eencourage women to get treatment. Of all women who delivered live babies in I989 (the year testing began), 65 to 70 percent entered care during the first trimester, That proportion steadily rose, to 73 percent in 1991, 80 percent i13 1994 and af most 84 percent in 1997, O w r the sanle period the porcun of women whose prenatal care was inadequate, as defined by widely accel3ted standards, fell 2 1 percent. "Our testing certainly did not

have a negative effect on coming in for prenatal care," a y s clinic charge nurse Trish Locklair. According to her log on "late entriesm--women who do not start coming in for care until the second or third trimester-even those who used drugs dexlied that they put off care because of a k a r raf being reported-57

Safe Havens

Bcastcy's Pickens C:ouniy cZirnic is one place that's getting it right, Her brightly lit clinic, which 1 visited in t 998, serves primarily poor white f ~ m ilies. Pregnant women in Pickens Czouaty who use drugs are more Likly IQ use marijuana than cocaine. In Green~rillc,about forty miles i~~vay> the poor population is predominantly black and pregnant women are nlore likel-). to use crack. rlll pregnant women are asked to give a voluntary urinc sample for drug testing when they begin prenatal visits at the Pickeals C:caimty clinic, Reparting a pr~sitivetest or reporting a woman's refusal to take a test to child protective services is not mandatory until after the twenty-third week o f pregnanq, The clinic has an exccf4cxlt record of cooperation. In time first ten Fars c\lFtc.s"sing,which was initiated in 1989, only one woman refused. Urine testing is critical bccausc a substantial minority of drugusing wonzen deny doing drugs, In one study, 24 percent of byomen who used cocarkm~ecv~uldhave been naissed if the clinic had relied so!ely on self~port,~"~athem;Bcasleyk patients are willing to disclose use, but, rhct doctor coxlf-it-med,"we fvurnld have missecl nisleteear women in 1998 if we did not do testing.')jy If a kvoman tests positive in thc first ~ e n t y - t h r e e~ ~ e kshe s , is rcferred ta substance abuse coilx-tsetingwith Jo Ann Musto Brink, who says that her goal is to "help the wornell get drug-free before givil~gbirthe3'60 She rtsuatfy succeeds, ""The women all, talk to each other, and tl~cyknow that our goal is IQ help them, riot to get them in trouble with the law; Rrillk says. Of the seventy-four wolllen who tested positive in 1998 for marijuana, cocaine or heroin, only two went un to have babks who rcsrs.d positive; one of those babies was placed in protection agency custody*

Urenda Gummir-igs,one sf Brink's patients, got maxried for the first time at age fourteen and had hcr first child at fifteen. She used alcohol and marijuana far the next decade and a half* At ag"zhirty she came to the clinic twelve weeks yregmant, She was smoking nmal-ijuana rtlgexfarly, and despite the urging of clinic staff3sshc didn't stop. Finally Brink made it clear 143 Gumming5 that if she didn't quit by her skth month, there would be serious consequences. The child protection agency "got me scared," C:urnmings tells me. ""Edidn? have a h o i c c but to quit. 1 couldn't ]me my kids..Did it seem like punishment? k s , but the Lord g a x us children, and wekre the ones who have to take care of them. I was forced to use my ~riEipower.I'm not sure I would have done "chat without fc9 I"Pnn:'bI Gummings's sdaughrcr Margarct tvas born healthy and drug-Dec and lives with Cummings and her new husband. Brink's yatiel~tsoften need more than drug treatment. Without job skiIBs or a high school di-ploma, these women, even if they stay cjean?will almost inevitably rernalar oal public assistance. Panda Kellcr runs Serenity Place, a residential program far young mothers in Grcenvillc. Thirty-WOvar-old Kiva Grccm; a rcsidcnr I interviewed in 1999, had no intention of quitting drmgs when she canle in. "hthoughe I'd come in here and play around and tell them what they wanted to hca$ she says,"" For the past decade she had been in and out uf drug treatment clinics for problems with marijuana and alcohol; five years before she had begun using crack. Two o f her children, ages eight and ~ c i v elibre , with rclativcs; hcr t~c~oand. three-ycar-old sons arc with her at Serenitplace. M'hen "Noodle:' her youngest son, was born, Greer was using marijuana. The hospital notified the child protectiw agcncly; and she was told that if she didn't stop she'd risk losing two of her other children and going to jail, "!%"hat choice do yau really have?" "she asks. ""Iasak Serel~ityPlace, f didn't want give up Noodle."'en did she decide to take the pmgram seriously?""Xd ncwr been in a residence bcfc~re,lt took about three week, I rnean, ysuke around people all the tirne, you can't get a ~ % ~with a y too ~ ~ ~ uAnd c h ,1 saw how firell thc atlzer women were doing, how they wcrc getting it together, getting jobs or going back to school. That's what I want. Maybe a career in fdshion merchandising:'

OAca the women are so ill prepared to be snothers, Keller says, that

a major focus of the program is simply helping them to develop self-ctis-

cipiine, Without the regimentation of the daily routine, KeIler s a p , rnany of the wojnen would "feed their kids candy f c breakfast ~ or lay in bed most of the day33 Teaching them how and when to discipline their children is also important, Kellcr explains, Three-quarters of her referrals arc from prenatal clinics like Reasley's, neonatal nurseries and the County Itcaltl2 Department-f~trtkcr evidence that w m e n arc nor staying awdy en lnasse from medical services. "When I first heard about the polic).," Leigh Beasiy telfs me, "X was very uneasy* 1 was afraid it corild scare women away. But now I'm a great supporter when I see how many women and chadrcn were he1pt.d:'hsi

The Whitner Case: Supreme Court Versus An ti-Mother Baclr: in CE~arleston,in the southem end of the state, the %\/Iedicall-l~rsiversity had suspended its drug testing policy in 1994, after the Office of Civil ]etails like these arc crucial in cxytaining why surgery was used less for biaclc patients and why death rates differed, but those were not the questions that Bach and his colleagues set out to answer,'"Tndeed, the authors then~selvessaid they could slat offer an explanation for different rates of surgery based on the kinds of data they collected,

Other physicians, however, \*.ere ready with hypotheses. "Possibly, pl~ysiciansare treating cancer patients 13otjust based upon their illness and recommended treatment, but on the basis of their racc:' suggested Dr. Hugh Stallworth of the Arnerican Cancer Society" A nmore emphatic rraction greeted a report in the itnnals ofEm~rgencykfedicine that 74 yercent af white patients with fractures af the cxtxmities received pain medication in the emergency roorn colnpared with 57 percent of black patients," "1 think it's racism, flat outjhaid Dr, Lewis Gotdfrank, director of emergency services at Bellevue Hospital in New Yc~rkCity.ii) Responses like these would probably not surprise John Landsverk of ChiEdxnk I-laspital in San Diego. As he obserk~es:""The usual innyllication of such disparities [in treatment rates) is that the health care system is biased against !>ersons of the ethnic minority group and rhae the bias is likely ta be found ewn in professisnal clinicians\~erceytii>nsof clinical problems and (referrals for] clinicd prsccdures,"'"'" Xn light of this, Landsverk is especially enthusiastic about one study led by a group of doctors from the Ul~iversityof Pittsburgh that fc~undno race-related differences in the treatment of chilclren with hehaviorral problems." Their report appeared in the journal Medical Care one month afier

B a c h snldy3h t it attracted Little public attentkn. It should have: it was ""an imnpltrtant nonfinding," as Landsverk notes in an accompanying editorial in the saxne jo-rrrlral, Not only did the Pittsburgh stucly include a very Xarge sample--almost fifteen tfa~tlsaradchildren treated in clinics across the country and IZallada-hut mast important, the rcscarchers intetniicwed the parent and doctor of ezlely patient, The ~swlrs:tbe race and ethnicity of the child had no relationship to clinician patterns of drug prcscribing, referral or diagnosis af bekwiarai problems. The dinicians also reported. spending saightly rt.rare time with minority ctlild~enthan with their white counterparts. The handful of studies just discusscd g i ~ as taste of the challenges inhep-cnt in i n t e r p ~ t i n gheal& disparities data. Erst, the vast majority of tre.atment disparity studies are what scientists call ""r&ospecti~~e*'"That is, the raw data already exist in hospititl rcrcc~rds,and researchers use them (in retrospect) to exyIort a specific question, (For example, are there more visits to emergency rooms on nights with a full moon!) The disadvantage of this approach is that key questions cannot be asked directly of the wry people being studied: for example, in the case of tbc lung cancer study>did subjects writ or refuse a specific treatment? Did tileir physicians offer it, and if nut, why? Secand, as Landsverrs ~ a c r i o nto the University of Pittsburgh study suggests, the abserrce of alleged racial bias does not xnak news, Corrsider the following example of a ~ e r d that y nrade a media s1;ttasiil the first tinne around.

A Misdiagnosed Case of Physician Bias Cardiac catheterization is a prcrcedurc used to dismm whether there is blockage ixn the coronary arteries-the vessels tliaat feed blood to the heart itscllr--and thus whether the patient is at risk for a heart attack, The delicate process invoIves introducing a catheter into an arfcl-y in the leg and threading it repward toward the heart, \%"hen it reaches the poirrt near "ihe apex of the heart where the coronary arteries brallch off, dye is squirted in, and the arterial patterns show up on a real-time X-ray. This is generally the first step in deterrnirling whether the wssels can be opened wider

rtsix~ga tiny balloon (balloon angi~plasiy)or whet-her some or all of the vessels must be replaced in a bypass operation, Struck by the observation that black patients undergo cathctcrization less oAen than whites, Dr, Kevixl A, Sc-lrrtlman and others at Georgetown University Medical Center wanted to examine how doctors make their decisions to refer patients for the procedurc.'Z "rhe researchers recruited 720 generd iarternists at medical aol.rverrtions arrd asked thern to participate in a study of clinical decisionmaking. Tfhe internists were not told that a primary purgssc of the study was tft cxyfure how the race and sex sf the patient n~ighraffect those decisi~ns,nor that the researchers expected to find that African Americans (and women) would be rckrred for cardiac ca the tertzation less freqjrtenedy eh311 white mcrz. The doctors watched a video of a w r s wearing lzospital gowns and answering questions poscld to them by an interviewer who caicited their comptiaints about chest pain and other releva~~t medical ancl personal history. The viewing doctors were inforrned itf the actor-patients' insurance types and their occupations, Ail the questions asked of the xctors and their responses, dowrl to the gestures they used in describing their symptoms, were scripted tit mix-aimize inconsistencies. As a group, rhc doctors, most sf wliorn were white, viewed 144 difkrent videcstayes, cane for every possible combirmatiorn o f race (black or white), sex (male or female) and age (fifty-five and sevenhy years otd),;znd including differing clinical xrariablcs, like the nature of the chest pain and EKG and stress test results, Individual dsctcbt-s were s h o w one randomly seieihed video. Next, the pilysicians we= asked whether the patients' complaints appcal-cd to reilcct heart disease or another kind of distress, such as indigestion, and CO rate the likelihood that the pain was indeed hcart-related, As it turned out, all eight actor-patients received similar ratings from the doctors, feading the authors to assume the doctors would refer for catheter-lzation at sinnilar rates as well. Yet this did riot happen; according to Schral~nan,'"omen and hIacks [in the study] were less likely to be Rfcrred far cardiac catheterizatifsn than EXICF~and ~~hites:'Doctors did llot refer white men about 9 percent of the time, while the black actor-patients

and women of botln races did aclt 91'1 rekrrcld 15 percent of the time, If representatiw of actual clinical outcomes, Scl-rulman told the media, this ivaafid mean that blacks arc " M pperccalt lcss likely to be referred for cardiac caiheterizatisn compared to tyhitesP2' He misspok, bo~fevrrr:what it really would mean is that white patients have a 40 percent dotver chance of not being referred. Quite a difference, as .\ye will see, These findings were presented in an article titled "The Effect of Race and Sex on Plzysicians' Recr>mmendationsfor Cardiac C:atheterization:" published in the New England Jvurrlai of Medicine in February 1999. Schrriiman and his associates speculate: O t ~ fri n d i ~ ~that g the race and sex 0f the patient influence the. rclccjma~aendationsof play"icians independcntiy c~fother factors may strggest bias clin the pdrt of the physicians, I-laavever; our study cortld not assess the form of bias, Bias Inay represent cwert prejrzdice on the part of pfi~ysiciansor, 1 1 3 0 likely, ~ ~ ccbuld lac the rcsult of st~bconscic~tls percepticons rather than delhiberate actions trr thoughts, Subct~.nscic.rus bias occurs when a patient" membership in d titrgclt group dratoxnatically activates a cult urdf stereatypcr in the physician" smemtrry regardless of the levct uf prejudice the physician hasa24

The study was a media sensaticpn, On ABC's TYodd News Tj;zis ~VIctmirrg, luju Chang told viewers: "How your doctor treats your heart may dcpend on the color of your skin,. . . 'The bias shows up in the diagnosis, and doctors don't even realize it."" Peter lennings predicted that the study ivautd make "pa1itiil-al waves" because it shorved that ""pejtadice among doctors causes a gap in the quality sf health care between blacks and whites,'"2" On Nightline, Ted Koypel set up the story like this: "Last night we told you how the town of Jasper, Texas, is coming to terms with being the place w h e a~ black man was dragged to his deatfi behind a truck by an avowed racist. lbnight we're going to focus on [doctors] . . . who would be shochd to learn that what they do routinely fits qllite easily into the category of racist behavior:'" Newspaper headlines echoed the theme:

"Cardiac Testing: Study Finds i%Toxa7en, Blacks Arc Being Shortchanged,'" the Chicago Tribrrne said.28 "l-Iealth Care: It's Better if You're White:' announced 7lire E~orzumi,ct,~ And all the articles rcpeatcd Schrxlma~Te'sclaim that blacks were 40 percent less likely to be referred, Some of the most intense---indeed, self-flagellating-reactions came from the medical profession itscff, An editorial in the Latzcet, Brititin's forernost rnedicai journal, saw the findings its being "as close to a definition of institaionalised racism as doctors and hcalth-care providers rnay dare to get.""' Aubrey Lewis, a Long Island cardiologist, warned on Nz"gla?iinsthat "if this Iphysician biasj conthues on, yuu'fc" looking at literally rz decimation of the African American population." Na one seemed to notice another article, published cadier that same February 111 the Aal~scalsof Internal 1Wediciure by the Ffarvar-d researcher I a cian I,. Leape and his colleagues. In their evaluation of thirteen New York City hospitals, Lcapek group faund that African L4~nerican patients arc as likely to undergo cardiac Is)lpass or baltoon angiaplasty as whites and Hispanics, and in some hospitals more likely to r e ~ i v ae r e c o m ~ a for o these p m c c d ~ r c s . ~ ~

A Second, Sober Look a t Schulman's Study A caref~kllook at the

ol^SB-hulmanand his colleagues reveals a nurrz-

ber of intriguing things. One is the doctors3impressions of the subjects: one might be surprised to learn that they found the wlzite actor-patients to be the least agreeable. FV2en asked, for example, to rate their imyressions of the subjects' personal characteristics, the doctofi rated the white rncn as rnore "'hostiXe'harzd gave thetrr the ]lowest ratings on scales that ranged from "&gnorant.'"lle~west score) ta "knowXcdgcaMje'" (highest score) and from "poor communicator" to "good communicator:' Similarly, doctors judgd (twhiec men to be more ""depen"f"ntr' than their black counterparts, more "sad," rnore "negative" in disposition, more " ~ ~ o r r i e dand " more "likdy to over-report symptoms(' Finally, the white mafes were judged ""most likely to sue? With such a litigious profile, one might have expected white men to be over-referred by physicians in order to avoid malpractice lawsuits.

7"e second rewfatio~acarlle six months after the Schulmaxk study appeared, when the ATiw England Jrturnal of Pvfedicinc? itself published a powcrft~Xret~tlttal.Lisa M, Sclw~niartz,Steven W0Xoshia-t and FE, Gilbert FVelch, all physicians at the m i t e River Junction Bieterans Administration Hospital irt Vermont, r e a n a i ~ c dSclilultnan" data and shcswd that tlac actual average rderraf rates far three of the b u r groups werc in fact the same,"' M i t e men, white wolllen and black Inen wer@all referred by nine in ten doctors, Only black wQpn-rcr.1,for reasons that remain unclear, had a leturcr referral rate: about cigh"iin ten, Put anrrthcr w(a5 thc black warner1 were 88 percent as 1iks.X~as the white women and men o f both races to be referred fc~rcathekrizatisn in the actor-patient studyy The doctors from Whitc River Junction also expresticd dismay at w l ~ a rrnight be called the statistical sleight-of-I-mazlcl that Schaslman and his cnlleagues used to support their hypothesis of pl~ysicianrekrral bias in favor of white men, It was only because Schutman a n d colleagues conlhined the referral. rates for black n2en (91 pcrcexll-) axad black women (79 percer~t)to yield an R5 percent black referral rate that they could conclude that the racial differences -ryereso nlarked." This nlancrairer led to h e "mistaken impression that blacks had a. 40 percent Lo~vcrprabability of referral than whites, whereas, in Pact, the probability of referral fbr btacks was 7 percent Iswel;'krt'~(fte the White River unction doctors, 'These exaggerations serve only to fuel anger and undermiz~ethe trust between physicians and their patients."'l Schwartz and her colleagues were not alone in expressing concern; the NEJM editors published a note in the sanle issue rcgl"t'tti~2gthat they had not reqxlired the mthors to use nlore straightforward statistical measures, "!Ve take rcsyollsibility for the media's c~verinterprc'tatic~~ of [this] article, . . . The eviclcnce of racisnr and sexisn~in [tine SchuXmaa f study was ouerstated,"9he editors wrotc.3" Ncwrthcless, even after seeing hokv itis findings had bcczt i n t e r p ~ t e d by "re press and used to guad racial rssentrsaents, ScEzulman wouldn't budgc. "OLKstudy will . . .encourage the medical pn3fession to seek ways to eliminate ursconscious bias h a t may influence physicians' dinical decisions:' he maintainede36Schullnan also met with the Congressional Black C:aucus at its invitation and briefed the men~berson bias in the health care

system." Als0 sticking with Schillman's interp~tationwas Paul DougXass, a cardiologist at Morehouse School of Medicine. "You can argue with statistics all da\i,32hetold U S A Tlia~laj)."We haw to ficc the reality of our siruation: there is a ger-tderand racial bias:"" Compared with the tidal wave of coverage triggered by the Schulnaan study, the article by Schwalrtz and her colleagues generatecl a mere trickle of lnedia interest, as noted by the columnist John Leo and the media magazine Brill5 CrJntent,j9

Alternative Explanations for Differences in Trecltment Less eycr-catching than accusations of bias are the e\rer);day aspects of clinical care that accoullt for many of the recorded disparities.. For exa~npiie, one reason pmcedure rates difkr is that medical problems do not necessarily occur with the same frequenzc-gi across races, As a 1999 =port from the I-Ienry J. Kaiser Family Foundation points out,"It should be noted that eIrery differential in care is not necessarily a problem and the level of care obtained by whites may not be the appropriate standard for comyarisun:"lo Consider these facts: txtcrine fibroid turntrrs, and thus hytstcrilctunlies, are more cebn1sz2ol-m in black wonzen than in whites, while osteoporosis-rirlated fractures, and thus hip replacements, are rarer. Limb amputation is Inore common arnong black yatients, typically because tlGcker atherosclerosis of the blood ~ s s c l i17 s the leg makes it lzarder to perhrm limb-saving surgery,"" A6icart An~ericansstiffer strotce. at maray times the rate of ~rhitesyet undergo a procedure to uxzclag arccries in the neck f cndarte~c&my)only one-fourth as ofien, Racism? Ux~likely.Same studies have documented a greater aversion fa surgery and other invasive proccdurcs among ADicawr American patients, but the morc substantial reason, in the case of endarterectcln~y,is c1inicd.Q It turns out that whites tend to haw tfieir gsbstructions in the large, superficial carotid arteries o f the neck region, which are readily accessible to surgery. Blacks, by con~parison,tend to have their blockages in the branches of the carotids. These smaller vcsscts run deeper and further up into the head where the surgeon cilnnot reach tlleln.43

721us, even without fixlaracial obstacles, arr African h e r l c a n patient at high risk for stroke is h r less likely than a white counterpart to undergo endarterectr~my* Yet indoctrinologists like David R, MriUiams, a sociologist at the Univwsity of Michigan's institute for Social Researcb, are quick to turn this disparity into evidence of bias. After all, they argue, if money is not art issue, then nl-tc d i f f e ~ n c cin trcatsnent nrust reprc'sent bias on the part of the doctors. Antericar? Medical Ne~us,the newspaper of the American hfedical Association, gives voice to this view: "National studies, such as one that examined care at Dept. of Veterans Affairs medical facilitieswhere a11 of the patients have comparable insurance coverage-suggest "racial disparities in the quality of medical care do nor merely reflect the behavior of a few bad apples: Dr*Wilfiasns said. The evidence is too averwhelming and the patern is too pervdsive."'44 Witliams seems not 10 consider a differeat iellerpretation: the yatients' clinical ilceds rather than the doctors' personal biases are dictating the care. Think about it: If not for concern about the patient (many of whom are treated in private l~ospitalsand have health Insrrrax^rce),why wouldn't physicians perform a reilnbursable procedure! Another consideradon in performing procedures is the cli~~icaf condition of the patient, Does he have other medical problems that alter the risk-to-benefit ratio of a psucedurc and make the outcome less fdvorable? The treatment of heart disease, for exar-irple,ohera needs to be modified in the p:"csP=nceof uncontrolled high blood pressure and diabetes---conditians more typical of black paients with heart disease than o f their white cot~nterparts*~~ Then there is the site of care itself, Some hospitals simply cla not oEsr certain cal-diiats pwcedrrrcs, such as bypass grafts or balloon angiaplasty Exarnistirzg a samtple take11 froin New York City hospitals, Dr,Lucian L. Leaye of the Harvard School of Public Health and his colleagues founck that about one-fifth of all patients needing tl~eseproct6lurs.s do not gee rlmem, largdy because 111ose hospi"els do not offer them, Leaye found that Fdilurc to recommend these procedures---and hence to transfer a patient to a hospitd where ir could be performed-is equal across all groups of black, white and fiispanic patients." Conversely, when rnedical care is ~ a d i i available y for specid yatier~t poputatians (for example, the veterans"

afEdirs medical cent crs or the military services), racial differences in treatment and outcome can m l t away For exampie, wtarans w i h cslorectal and prodate cancer sbaw no race-related differences in t ~ a t m e n availt ability, treatment methods or survival rates,"?

Fairness a n d Kidney Trarrsplantation Patientskttitudes mwarcl illness and care also play a role in delernlining the treatment thcy recei1.e. The nature of their belief in their personal susccpribility to disease, the seriousness with which they perceiw disease, their confidex~cethat tbc treatn7ent wi2i woric-and even that the lraedical system is benign-are ail, relcvant,i~":ifferenccs in heatth beliefs account for seaale o f the rc.lucfance in the African American community to donate (and sometimes receive) kidneys, according to t)s, C:live 0.C:allender; head of transplant surgery at Hsward University Medicr-sf Cen ter in IVdshington, DC, Galtender tells me that, compared to whites, Akicar-t American paticnts are less trustful that they wit1 bc wclI cared fol; whether as a Iii~ing ~ l a t i v cundergoing surgery to dollate a kidney or as a patient undergoing transplantation surgery to receive one. Some fear that signing a donor c a d wiU lead to prernatt1r-c:cteciaration of deatl~.dVOtbcssexpress concern that a deceased dollor will either be disfigured or unable to get into heaven without all his body parts, A pstel~tialxciyient n2ay ellso ~ l h j ~on c t reIigious grounds to having the tissue of a dead person in his bocty. Moreover, blacks are not as likely as whites to believe that people who get trallsplaaats gain additional healthy years of lift,"" 'To enhance recruitlncnt of African American donors and dispel thc myths sinrrcaundirlg donation, Cliw Callel~derdirects the national &Minority Organ Tissue Transplantation and Education Program (IVTBTTEB), wlaich operates in over a dozen cities, Undcrsbnding patients9objections to donation anti de~nystiEyingthe process is critical because severe (or "end-stage") renal disease is about four times more common in blacks than in whites and, as we will see, thcrc arc culzsidcrable benefits to receiving a kidney from a living donor of the sarne race.

7"e)creat-e incentiws for organ donation and expand the bIacli organ donor pool, Wdyne B. hrilason, a minister writing in the Hastings G'frlter Reporr; has proposed an experimental protocol that would try to pair a black donor kidney with a black recipiexzt,'qorne Ahican An~ericanshave expressed a desire that their organs bc earmarked for black r e c i ~ ~ i e ~ ~ t s . ~ ~ Arraason's proposal addnsscs the fears of some black patients that they arc being discriminated against in the kidney transplantation process, fears stoked by obscrwrs like Ba-vid Bartan Smith, a socioftagist at the University of Michigan, who asserts in his 1999 book Henltla &"clreDivided: Race atrd !$eaEis~gn Nntion: "The assuarptions that served as justrificatietn for the Tuskegee Study remain in evidence among those providing health services to [the black] population, . . . BIacks have lawer rates of kidney transplants . . . ekren \%rhsreLIO differences in insurazlce or abiliq to pay exiSt,"53 "This matter has attracted the attention of a wide spectrum of adwcates, fran~the Revererrd Louis Farra&an jwho has said that whites condone black-on-black killing as a source of transplantable organs) to law professors who propose suing the federal government for violating civil rigl~rslaws in the allocation of 0rgans.5~'The U S . Chlnrnissi~non Civil Rights has also weighed in: "Black patients remain less likely than other minorities and whites to ~ c e i v ae kidney transplant:' it ~ p o r t c din 1999, calling this "an aspect of health care inequality that thus far seems to have eluded the [HHS's] Office of Civil Rights:'ss "lo assess the fairness of the charges levied by the Commission on Civil Rights and others we must first walk through the steps involved in dona.ting and receking a kidney The road starts at renal dialysis, Every two or three days patr;cnts with end-stngc kidney dIscasc undergo a process called renal dialysis while they wait far a kidney to become available. During the three-to-four-hour dialysis process, patients are hooked up to a machine that acts as an cxtemaf kidney>removing the fluid and metabolic by-products that are rlsrnially cleasecl by the kidney and excreted as urine* For rtncleaf reasalls, biack patknts, on aaicrage, tolerate dialysis better than white patients--.who are mare likely than black patients to die while an the waiting list-ancl blacks can be

maintained longer in a healthy state before transplantation,""just the opposite is true, however, ancc the operation has taken place: black patients, on average, do not tolerate the transplant& organ as well as whites, and they nlust return to dialysis s q p o r t soclnrr and rraore frcqucntly.57 Since patients of any race remain at greater risk of new complieations or even death the longer they are on dialysis, the definitive treatment is typically transplantation, Thus, it i s crucial that patierlts be put on the waiting list as soon as possible. Yet black patients are about half as likely to be l>ut on the list at any point in time; once ii~ted,they renlain there about twice as long as white patients until a suitable organ becomes availahte.'"hus, irz B98 thc averagc white candidate was t%viceas jikely to receive a kidney as his African American casunterpart,""These differexlces need to bc invcstigat~.dand explained, blerch of the demt~graphicand clinical data on orgall franspla~atation come from the private nonprofit organization UNOS (United Network for Organ Sharing), wl~ichserves as part of the organ a1iocatiol.r sptcm for the federal goet-nmcnt, It coodinaks tbc waBting list, distributes kidneys and devises complex formulas for organ allocation that take into account a patient's medical condition and other biological fdctors. The W O S syskrn also collects data on the cbaracteristks of transplant candidates and recipients SIP that researchers have access to large and repmsentat-i~uredatabases, Lzihat do these and otl~crdata tell us about the dynamics of kidney allocation? They indicate that the earliest step in the long I'rocess leading to kidney transplantahitrra-bct~~g gut on the waititlg list-depends on the paticnt having access to good health care in gencral. If a patiellt does not have a rcglrlar doctor who will refer him to a transplant center, the entire process of obtaining an organ is slowed. The center registers patients for the waiting list, determines medical sui"tabifity and conducts the pretaansplant workup, Ability to pay does net seeIn to pose a barrier to kidney transplantation, since any patient with end-stage renal disease is eligible for public insurallc~that CDVCYS dialysis, ntedicatioia, doctors' services and transpla~ltsu rgery*bO

Another key aspect of the transplantation process is the patjentk int e r ~in" receiving ~~ a kidney UNOS data suggest that AfPican America12 patients decline the procedure m r e often than cto whites,@ Reports have documented that blaclc transplant candidates were more often undecided, ITzore apt t s decline the transplmt operation at the last minute, nlsre often unavailable owing to illlless and more likely to be ulllocatable when a kidrley became avai1abje.e A l999 stlnciy l,y John %, Ayanian and his coileagues at the Harvard Medical School discovered yet another pattern, In interviews with about fourteen hundred patients o n dialysis, the researchers found that although black patients .cvere sosnewhat less 1ikeX.yto express a desire for a k i d n e ~their marlcedly lawer rates of referral to the ivaitirag l i s t (a little over 50 percent far bblarrk patiel~tsversus over 76 percent for whites) could not be explained solely by this difference or by other clinical fdctors." The Apnian sru* was especially noteworlhy because it was prospective: the researchers interviewecl paticnts directly, in real time, about their preferences. The drawback tcr the study, however, was that the researchers did not questicrn the doctors about their decisions to refer their patients to thc waiting list, A more detaiied took at the nonracial characteristics of patients who vnirere placed un the waiting list reve,tls some hetors h a t lnight have inRuelaced the doctors: whether the patient was ""verycer?ain'hbout wanting a kidney (about seventy out of one hundred white paients were '%very certain,'kcomyared 10 sixty out of onc hundred black patients), younger age, whether ehc patient expected to live longer with a trdnsplallt and \libether Ihc patient reported greater agreement with the doctor" srnedical decisions, Ayanian and Iais colleagues also fi>und h a t black patients were less likely to report that a physician had discussed with them the possibility of receiving a living kidney from a Fdn-aily member. Similarly, Eclward Guadagnoli and his coilcagucs, also at the I-larvard Medical School, found that hospital staff at i12 hospitals approached white families of the Rcently deceased to request the body's organs up to mice as octerz as they appoached black families. Apart frorn the obvious reason for not a y proaching the family-that the recentfy deceased was not a s~~itable medical candidate for donation-the atlthors speculate that sometimes

medical personnel pmrrnle that black families will &clix~esince their rates of refusal, when asked, are known to be higher." It Its also possible that differcnces in manikstaions of grief influence the dccisian to approach a fidrnily, krsonnel, for example, are more pellnctant to approach Fdrnilies wha seem e x t r m d y trak~matizedby their loved one's death because it might seem cruel to compound their distress.63 Thus, the remedy for recruiting more organ donors is better education of both medical personnel and the public. Medical prsonneI, research indicates, have l~ettcrsuccess at requesting donation when they arc mo~c'skdled at meeting fdmilies' inf'ornrationai and emotional needs,"" number of variables have been show11 to influellce willingness to donate a loved one3 organs9among them. the belief that thc loved one received the best possible care, In addition, fdmilies are nlezre likely to donate when they understa~ldthe concept of brain death (and have discussed it before the request for an organ is made), if they are given enough time to make an informed decision, if procedures are described in understa~rdablelanguage and if the disck~.tsssionrakes place in a quiet and prim& place.67 Combining t k c s ~principles -with better education for the public tflrough a program like Clive Callender's MOT'I'EII) seems most promising, Simply getting mart3 people to have a Eamiliy discussion about donation is important because Fdmilies arc: rnorc Likely ta a v e r to the donation process if they know the deceased had y reviously exyressed a desire to give his organs. The -Ist2QTTS3hbprogram also involves explaining the biology of matching and thc nature of the surgical procedure, and working with churches to dispel religion-based xnytha Calletxcler's results are encouraging: by the late 11990~~ 45 percctlt of kidneys transplanted at Howad University (a predominantly African American institution) were from black donors; a decade earlkr the Ggurc had been. under 20 percellt,

Now let us turn to the clinical aspects of transplantation, A crucial dimension is tissue compatibility Without a good the donor kidney will provoke the recipient's immune system to attack or "reject" it. The better the rnatch on bisliogical variables, the better the outcome, Accord-

ing to il, report issued by the UNOS k4iste~s;ompatibilityCommi~ec,black patients in need of a transplant wait longer owing to fdctoas such as blood type, stnsitization and ssnle a~~tigens.~X Simifi~rI);,Rand researchers found ~ l ~""on= a t a patient is on the wtziting list, biological facmrs may predominate" in explaining his lower chances of receiving a kid11ey.6~ A technique cd1ed antigen matching is used to test for different combinations of six major antigens, or proteins, found on the surface of tissues, A perfect six-out-of-six match is the ideal condition far compatibility between donor and recipient. A completc match is far less comlnon in African American transplant candidates than in whites because they have more passible amigcn combinations than whites do, and suene of those antigens arc very rare in the general populatii~n,Scientists are stilt debating the precise physiology of organ rejection, and y ar ticutarly the extent to which the orgall is jeopardized by less-than-perfect antigen matching.n"Vhat they do know is that black transplant recipients arc n ~ o l likely r to reject their new kidneys, Passible reasoxls include poor control of hypertension or a more vigorous im~nurreresponse,71 Even weftmatched transplants can be lost to wection, suggesting that the standard antigen-matching sptem may be too simplistic.'" Clearly, we need a better understanding of transplant immunology and more effective medicines to prevent rejection.7"If the comyatibility is marginat, it is sametimes most. practical h r the physician to have the patiellt stay on dialysis longer to wait for a better match. First, losing a kidney to rcjection from mismatch actually makes the recipient rnldsrc likely to reject future kidneys. Second, every rejected kidney is one less donor kidney that could have been available to anodlatr person s n the wailing Iist, This is a critical point because donor kidneys are among the nation" scarcest resources. In 1999, far example, more than 70,000 Americans began dialysis for severr. renal disease, but only about 12,500 received tran~plants.7~4 TO circrrmvent sorne of the biological constraints, physicians encourage donation of a kidney from a living relative so that the chance of a match will be enhanced, Livillg donation is also promoted even if the ~ O I I O Ris " rrot related and not of the same race because there is so much

added bencft from getting a k s h kidney-one that goes straight Gom the operating room of a llealthy donor to the operating room of the rec i p i c ~without spending too much time on ice, In hct, along with tissue coxnpa"libility and the clinical conditior~of the recipierlt, tire amourtt of time spent in "cold storage" is one of the 1110st important factors in the successful f~~nctioning of ;P trd~arnsplantcdorglm, Getting a Iir(r6:kidney has iitrle to do with the xnedical rstablishrraent and a great deal to do wish the health and attitude of one" famity and others of one's own race. Unfortunately, the black donation rate from likring individuals is very low relative to need. tn 1998, h r example, 438 living kidneys were donated by Ahican Americans, but 14,925 ilhican Americans needed a kidney (a ratio of 3 donaetid per 100 needed), %?hie2,559 whites gabre live kidneys and 20,616 were in need (a ratio of 22 per 100)," In addition to persollal reluctance and wariness of the system, the rvtv rate of black Live donatir~nrelative to need is due in part to the fact that so many potential donors are not eligible to give a kidney because they suffisr Frorn hypertension or diabetes, conditions that diminish the health of their kid11eys.7" UNUS data show that in 1998 almost one-third of all transplant candidates rece&ed a living kidney: 73 percent of "rose kidneys were. gilren by white indkiduals to their rclafives or friends, and ,t 3 percent by African Americans to iheirs.77 Most patients on dialysis, espcially black individuals, receive arr organ fmm a deceased donoa; a so-catkd cadaveric donor, Oncc on the from waiting list, how do black patients fare in the allocation of kid~~eys cadavers? In 1998 African Americans represented 36 percent of the waiting list for kidncp; as a group, they donated 1 t percent of all cadaveric kidncp (proportionate to their repraentation in the general pr~pulation) and receiwd 27 percent of ail donated kidncys.78 Thrrs, more than half of a11 cadaver lridneys received by black trans-. plant rccipicnts came froa3 donors of other races (p~doxninantlywhirc), As Maritza Rozon-Solurnon arld DI: Eewis Burrows 06 the Bepartrnerat of Surgery at Mount Sinai School of Medicine observe: 'Xfrican-Americans have historically donated significan tly kwer cadaver kidneys than they have received, They have benefitled frona Caucasian organ donation,"79

Donation is a gift of life that transcends racial score-keeping, but it is still important to look closely at the ntln~bcrswfmen bids in the allscation of kidneys is dlegcd.

Cultural Contpetence Commux~icarionbetweets doctor and patient has always been a vital @spect of the clinicat cncouatcr, A r ~ dwith more groups o f non-Englishspeaking immigrants in need of health care, the ductor-patient liaison has taken on atlded importance. 'The term ""cultural competence" has been coined to refer to the attitudes and activities surrounding such communication*A cu1turaH.y~mmpetent physician, accor-ding to the American hiedical Association, is one farr~diarwitEl the ""asliefs, valuesgactions) C U S ~ O ~ S : , and unique health needs of distinct population gr~ups.~'RO Cultural competc~.rzccis really a matter of common sense. Doctors and nurses who serh7ecommunities of unacculturated im131igrants or isolated rural poprrlatians need to Xearn local anthropology: dietary habits, child-rearing practices, folk remedies, colloquial terms for common symptoms and syndromes, family s t r u c t u ~characteristics, attitudes toward p11ysicians and theories of disease causation ar-rd prcwntian, Banslators arc often needed because it can be awk\vdrd and anproductive far a patient's English-spaking child or neighbar ~roixltcl-yret intinlate medical detaits or translate nlattcrs like sexual problems, injuries caused by dorraestic abuse and so an, Appreciation for these accomlnodations has grown markedly over the last decade. A cent best-seller about an immigrant I-lfxnong family and its encorxzxter with, American medicine is a poignant true story of cultural differences. In The Spirit 4;atchgs You arld You Fail klown, a klmoxrg daughter is afflicted with ey ilepsy.8' The family>attributing her illlless to spirits, ~lebufgsmodern medicine, In this account there are no villains, The book, 1 am told, has becorne de facto required reading amollg lnedical students.. The Harhorview Medical Celxter in Scattie and the Metropolitan Health Plan of Henncpin C:ounrgr, Minrtesotz, have created first-rate interpreter services for their ilnnligrant patients. Other hospitals and health

plans have set up cornmurrity-based interprtster banks that operate in conjunction with focal universities and immigrant service agencies. The Maiscr Bermanente Medical Center has produced a series of provider handbook that are packed with tecl~rtical~ferences,Facts on disease palkms, anthrcl;polrsgic,af detail and l~clyfilladvice. k Asian Arneriian a n d Pacific Kaiser's sek~enty-six-pageh a ~ ~ d b o oon Island Arnerican populations reminds doctors to "ask the patient to whonn he or she wants medical i~~formatioa? comlnunicatcd. Among some groups, the patient's hearing of bad news is believed to speed up the process uf death."" "'I'hey are also cautioned to ""bc aware of such yractices as coining [rubbing a coin on the body or cupping to avoid mistirking the reddened areas or marks on the skin as self--labuse or child a bmse""3 From the handbook uel Latinu poyulations, cliniciatls learn that ""sn~etatinas do not breastfccd cmt of a belief that it is not "nodern30 do so."""%i~d ""adlref that the life force dkvells in the heart is not uncommon and hence such concepts as 'brain death' are Loss readily understood by same Latinos;"'85 Currently, almost all of the t 25 accrcditcd iimcrican medical szhoaIs ofkr some teaching in cultural competence. hfany add it fa their required cclurse on doctor-patient communication, a staple of the first- s r secondyear mrricuIa W~ICII trainees start learning hol~tfto interview patients, elicit symptoms and establish rapport. According to the ksociation of American Medical Colleges, Sh schools had a separatc ~ q t l i r e dcouf-se on CLEXtural competence in the 1998-99 academic gear," Hospitals and health plans are also y rovidirrg training In crriittlrai cumgctenrce, Wt surprisingly, some i~~skitutions offer variants of cult~~raf competencc training. Some programs lapse into a bid for ccicbrating cultural rcIativisn~in the clinical setting, an appruxch that is not always in the best irlterrst af the patient. The Qffice of Minority I-leaftBz sk'tl-ae U,S. Public Health Service, for exaznple, asserts that "cubturaBy competcl~tpolicies and Fograms must be developed and implemented in a manner that does not conflict or require change of thc beliefs and behaviol-s of those befongillg to a racial or ethl~icgroup being served.""" lllelclorah L, d;olztcl, M.D., of the T'ermallellte Medical Group believes that cultural compe-

tence requires that a health prokssianal "get past one$ owrl socialization . . . [and reexamine] old assumptions regarding the needs and the diagnoses and treatment of patients based upon a pit-dominimdy homogerreous Westerrt ~ h i t n~odel~"gS e Such endorsements of czlltlnral rclatfvism can make it wry difficult for doctors to give important advice, according to Dr. Michacl Fetters, a Michigan f,lmily practice physician. Fetters started the Japanese Family Ifealth. Pmgram in Ann Arbor to serw the Japanese families who mowd to the area to work for Toyota.gYHis pregnant patients often dcdinc the falate smpplemcnts he prescribes to prevent spina bifida and related spinal cord defects, a common prenatal care practice in the United States. In Japan, Fceters expfai~~s, vitamins are considered xnedicine, and medicine is not to be taken during pregnancy Yet Fetters" patients are not served by a doctor who stands by in the name of cultural sensitivity when uncrthealtb practices prevail, 'The physician must acknowledge the lighte~~ed patient's belief, but it is also his ethical in~perativeto make a tactful attempt to change a yaticw's mind about taking the supplement. As Fetters sap, providing culturally sensitiw care docsn't rncan you ~vilfalways meet F u r yatients3expectations,

Wanted: Good Doctors for All Americnrzs Acceding to a 1994 IIarrils poll for. the Commonweal& Fuxzcl, race does not play an especially large role in patients' attitudes abcrut tlilein. doctors, TYI.qren asked to cite the factors that ""influence your choice of doctor>"the physician's ""nationalityiraccicrthnicit$inmra~kedtt-~relfthout of thirteen possible options.g"lust 5 percent of whites and 12 percent of minorities said it was important. A greater portion of Asians, 28 percent, rated raceiethnicity as important, probaMy o'vb6illg to Ianghlage harriers." hen. so, over 60 percent of white, bhck and Hispanic resyo~~dents said they did not consider the doctor's ability to speak their language particularly relevant to their choice of doctor.92 For the entire group of four thousand respondents, factors such as ease of getting an aypointn,ent, the convenience of the oftice location and

the doct~r'sreputation werc most influential, cited by about two-thirds of respondents.9-l When respondents who expressed dissatisfaction with their regular doctor were asked for details, only Asians claimed that race or ethnicity was the probleni~,{And the percentage was small--only 8 percent of all Asian respol~dents."l) Among the subset of the entire sample wl-ro said they ""did not fed welcome" at lhcir doctor%office, a tnere 2 gcrcent of African Americans and IIispanics and 4 perccrlt of Asians attributed the discomfort to racial-ethnic differen~es~95 'The main complaint of almost all groups was the doctors' "failure to spend enough time with me,"") And of those who werc dissatis6c.d enough to change doctors, only 3 percent of Asians and 2 percent of blacks did su on the basis uf the physician's race or ethnicity" "'Themost common collirpiaints were ""lack of curmtmunication:' "didn't jike him or her,""couldn't diagnose problem" and "didn't trust his or her judgment:'nR k s s ehan t percent of those who said tl-rcy had limited choice about where to get care attributed it to racial ol- ethnic discrimination."" In foals groups conrxnissicpned by the I-Ienry 1, Kaiser Family Faundacc~n,disclxssians revealed that ""tc nlcbst ccrlmnlon forxn of discrixnirzation described by minority consumers was xaot racial, [nrj ethnic, ratfaer it was discrimination based on the ability to pay for health services.'"'"" iS. 2999 strrwy by the Foundation queried almost thirty-nine l~undrcdpeople about their doctor, Arorarnd 85 percetlt of whites, African Annericans and Latirzos rated their doctor as good or excellent."]' Wl2ites and Hacks were about equal in an~swcrilag"vs"wl-ren asked whether their dinickan paid enough atknticrxx to them (89 and 87 percent, respectivejy), tho~~gltr slightly fewer X-fisganic patienls said so (80 pcx.ccnt),~fiVOne in h e black individuals pt-@i-'crl.eda doctor of thcir ovvn race, while 12 percent did not want a doctor OF their own rase."U Antong I-tispanics polled, 28 percent wanted a doctor o f thcir own race, and 17 percent sdid they did not, En a much smaller survey syrdnsored by ~%ORZ~OUSC College of Medicine in Atlanta, 28 percent of the 25 1 Afican Americans surveyed ""considered it i ~ n portant that their doctor be of the same cthnic group as themselvesi'"]" IVhile most minority patien~tsseem unconarned about their doctor's race, it is important to some. People with private insurance or

enough money can choose their doctor based on race or ;lly other criteria they like, hut those in managed care plans are limited to the plan's The American Association of Health Plans is acutely physician net~%fork. aware of this, "Plans make a concerted effort to employ a diwrse panei of doctors. They want to accommodate patients if they can:' I was h,ld by Dr. Charles M, Cutler, chief medical officer of the associaticsi-k, The data support him. A study of thirteen large urban collrlties in C:aZifornia conducted by Andrew B, Bindwan and his colleagues at the San Francisco General Haspitail found that ""non-white physicians wclrc m rnorc IikeIy. to be denied or terminated fronl [managed care plans] and HMO contracts than wcre white physicians:'"" Their sample was represcnkzfvc of the region's physicians, containing more than 70 percent of all ofiice-based black physicians in San Francisco and surrounding areas. A l~ationwidcsurwy by Elizabeth R, Mackenzie and her colleagues at the UIriafersity of Pennsylvania also Er>~~nct that a physician's race was not a predictor for whether he would apply to work for a managed care network and his subsequent a c c e ~ ~ t a n c e e i ~ l ~ N O I ~ C ~ ~ Cthe ~ ~National C S S , Medical Association claims that black physicians are being kept from participatix~giar managed care, In January 2000 the association hdd a press conference to ptxbiicizc the &arge that mallaged care plans discriminate against them*The gr-uup's p~rcsiderat,Da= FValter Shervingtcln, said that ""Bnealth plans are syste~naticallyexcluding black physicians frurn phpician p a ~ ~ e lati s ion wide, The omission limits patient choice in selecting physicians of like background, ultimakefy cornpromising quality health care for the patient and the c o m m ~ n i t y . " ~ i \%en asked for evidence by a correspondent f i r The NewsI$otir with Jim Lehrer on PBS, Shetrvington had none at Izand, "Association mcrnbcrs conceded that they lacked contprchens&e n a t i o ~ ~ data a l to buttress their claims,""said the News%rfourcorrespondent.Lo8 Xndccd, Mackenzie" ggrsblp found that managed care patients represent a larger proportion (80 percent) of black doctors' practices than of the practices of white doctors (70 percent), Asian doctors (66 percent) and Hispanic doctors (37 percent). Thus, while charges of systematic discrimination are unfounded, the anecdotal reports of black

physicians being dellied acceptance onto managed care panels no doubt reflect ssmc basic h e t s about the way managed care, for bettm or warsc, runs its business. Fur example, managed care plans prefer to hire board-cert iGed physicians [to avert the risk olnaalpractice'l, physicians with fargc practices and those whose patients have pivate insurance, Relative to white physicians, blacks are less likely to be certified and xxlore Iike1.t; to be scllio practitictners a d to treat psierats who are underor uninsured,

Rationale for Affirmative A c t i o n in Medical School W e t h e r the quality of health care for minority pa"liertts truty deperlds 01-1, producing greater numbers of minority physicialls is an unresolved empirical question. If anything, the evidence we have thus far suggests that the answer is no. Nonetheless, proponents of racial preferences in rnedical school admissions c011tend that x~hirephysicians tlrcat white patients bettcr than minority patients, with whom, it is said, they have difficulty dearelaying a raipp~rt."~'"Tjaisis not a quota born out of a sense of equity or distribution s6 jusdce, but a principle that the best health care may need to be delivered by those that hlly understand a cultural tradition'5says George Mildhell, the fomer Senate majority leader and the chairanan of the Pew 1EScaItl1 Professions Commissioxz.l To bc sure, u~~diersta~~ding a patient's cuftkaraI tradition is important, but need one be a product of that tradition to have sufficient sensitivity to tlae patiexlt?Virtually all of the major medical organizations, including the AMA and the federal Council on Graduate Medical Eciucation, say yes, Foremost among them i s the Association o f American Medical ColIegcs.lll When Cafifornia and Texas were planni~lgto dismantle racial preferences in 1990, thc M M & ;formed kicalrh Pmfessionals for Diversity> a coalition of major medical, health and educational associations, to lobby for the preservation of p ~ f e ~ n c eRy s , the time Initiative: 2061, the 'C(I1ashingtun Slate referendum to prohibit grefcrcmces by racc, ethnicity or sex in public institxllions, was on the ballot in 1998, the coalition included fifty-one associations among i t s mernbershb. According to an association

vice president, the true message of race-naeertral poticy to nlnority students is: "FVe don%tarlt ~~oLI:" Given the relatively small numbers of black, Hispanic and Natiw Arnerican physicians (3 percent, 5 percent arid less than 1 percent of the nation" smedical workbrce, rcspectiveb), compounded by the declining nuniber of minority applicants in the late 1990s, meclicaf schools knr>w they need to rely on racial preferences if they are to boost these numbers in the next few ye.ear~.~'3 Thus, a few weeks before Washington State votcrs were to cast ballots on initiative 200, the RAMC made a highly visible appeal in newspapers. I t r a n a full-page ad in wklich eight doctors appear under a huge banner headline: "The Toxic Side-Effects of initiative 200;"" The ;t;%MC3s ad warized readers that without racial yzreferenres in 1xedica1school admissions, n-ninority Americans wilB not get: the health care &cy nced, iafier all, the association argued, minority physicians tend to serve black, I-Iispanic and poor patients more often than white physicians do and are rn0t.c likely to practice in poor neigKhorhcpods.lMIn addition, the association pointed nut, minority medical students often state that they want to practice in medically underserved areas, 'The ad was allso quite specific in predicting that, with fc~vcrminority researcfiers, less pr"g-rc.ss will be made in dealing with sickle-ceH anemia, prostate c a a x r and ix~fantmortality-all conditions that disproportionately affect African Americans,

The Current Status of Minorities in Medical Schools Blacks, Hispanks and Native A~ncricanstogether xgzreseilt m m than one-fifsh sk' the natisrrt's population hut less than one-tenth of the physician workforce. As such, they arc undcrregrescated minorities, or 'YliKMs:" as the Association of A~nericanhkedical Colleges refers te thena. Asian Americans arc not considered ~1 rl~irloritybecause they arc well rep-resented among practicing physicians--10 percent versus 4 percent of the general population-and they represent 18 percerlt of rnedical school graduates,"fg

Racial prcfexnces have played a role in raising first-year enrotlrnent to the point wherc, by 199") it reached 8 percent black and about 7 pcrcent Hispanic, though it remains 1 percent Native AznericansHV~t recruitlnent has been clifhcanlt, f m 1995, whcn racial prefe~ncesin rnedical schools \ e r e nearly universal, only about 12 percellt of first-year students were black, Hispanic or Native American. Robcrt G , Pctersdorl, disrmer president of the AAMC, describes the recruitment challenge: "We ccanllot produce underrclpresentcd minctrity rnedical students if there is an insufficient number who are applying to our schools, graduating from college, or even finishing high school with sufficient skias to enable them to survive a premedical course of s t u ~ ~ y ~ ' ~ ~ ~ ~ Nonetheless, by 2010 the IZAAMChopes to attain raci,al and ethllic representation among physicians that is in proportion to the general population, That goal wi'll be unreachablc if curxnt trends continue, according to Dsnald L,Eibby of the FVisconsin Metwork for Health Policy Research and his colleagueseMWasedon a minimum requirement of 21 8 pi~ysiciansper I UO,OUU population, Libby calculates that, starting in 1998, the annual number of first-)rear residents xxlust roughly doilble dh>rMispmnic and black physicians and triyIe for Native American physicians if parity is to be attained by 201 U, Simultaneously the nt~mberof whik firstyear residents will have to be rcduclc.d by abr~crttwo-fiftl-tsand the number of Asian first-year resideas by two-thirds, The impact of race-neutral policies it? s m c states will make the 20 f 0 parity goal even mure eltlsit~.,Within two years after Proposlti~n209 passed in 1996, there was a 29 yrrcealt drop in applications by mialorities to six public medical schools in California."' This set alarm bells ringing throughout the rnedieai establishment. "'There is a nal.ional health need for pi~ysicianswho, after the 'I'lxskegee Syphitis Study9 for example, are trusted by large segments of our poyu1ation:'wrote Michaei 1. Scotti Jr. of the American IMcdical Association. ""BI: ~iotlbdbe dcyltarabltl%e continued, "if rnedical schools were. neat permined to consider the rleeds of gatients whcn deterlmining their criteria for selecting the hest qualified applicants:"Ei1 David M, Carlisle and his dleagues at the LJCLA School of Medicixze prodaimed it a ""tragedy that medical students may tltink they are not we[-

come . . .within the mediciil prsfession."""2' Rdndall Msrgan, an orthopedic surgeon and former president of the National Medical Association (NMji), ivhich represents more than twelziy lhousand of the nation's African American physicians, said: "War must be decdared on any and dl atternpts to limit access to rncdical education for students who comprise the under-rcpretsented mim~rinics.~'~"~kl pmtcst of the passage of Initiative 200 ina Wdshington, the NMA pulled its 2001 annual meeting from Seitttle.':' Perhaps the most overwrought statement came from H. Jack Geiger, a professor of public health at the City University of New York. His essay in the Arfiericcan Iszrmal $Public FrXecllfh, ""Ehic Clea~zsingin the Groves of Academe:" foresees these "creversais in mir~orityadmissions last merely the Icading edge af a potential pubtic health di~astc.r+'"2~"; pyublic hcaleh disaster? Only if there is rrothing more important to Americans about their doctors than race,

Care Trumps Color

Only a harrdfui of studies have been devoted to the clucstion of whether patierrtsbulltcomes are better if they and their doctors are OF the same race, hfany of these studies w r e C O I I ~ U Cwith ~ ~ ~psychiatric patients, and the m;ljority show that the clinician's race has a minixnai impact on haw black arrd white patients fire in their treatrrlent and recuvery,'zWne large study that a;i>pw"rdin the journal k~lniatrz'i-Scrvims itlvolved rn0l-c: than seventeen hundred homeless individuals participating in an inter-rsive services program. Each person ivas randomly assigned a case manager with whom l ~ worked e clascly. Over the ccturse of a year improwment in dimerlsisns likc thc number of drr)rs a patient worked at a job, he had drug problems and the number oF days he spent homdess had no reIatisnshig t s whether he and the case manager were &C" same race.ilh Other reseaschcrs laokcd at the doctor-paticlzt relationship in a different ivay* One recent study>led by Lisa Cooper-Patrick of the johns I-lopkins University School of Medicine and published in the Jotrrnol of the Anacrimn Medisirb i%ssui:iation,reports that black patients rate h e i r visits as more "participatory" when their doctors are also black.ll' T'atients gave the visits a ""participation score" based on the freqrtency with ~7hic.l

they felt the doctor invalvecl them in treatment decisions, The Johns Hopkins authors claim that their findillgs about participation "support the argument ^or increasing the numbers of minority physicians." Senator Edward iV, Kennedy of r3"tassai:busetts citecl their work as ecyidence for his assertion that '"bias in the health care system is also a factor in raciat a n d ethnic hedth disparitic~:'~~ A closer look at the Cooper-t3atrick data, howcvcr-,teak~esone unsure abo~rtits clinicaf significance, In particular, patients rated their interactiolls with a same-race physician (a participation score of 62.6 out of a pos"ilale f 21)) as barely different frotx interactions with a different-race yhysicial~(60.4 out of 120).1'V questioned Lisa Cooper-Patrick about the clinical significance of such a small nuaxerical diffcrencc. She assuxd me that it was important to the patients' healtEz and referred me to a study by Shcrrie 11-Maylan and her cotleagt~esat the Ncw EngZand Medical Centcr for further c~nfirmation.I+~ As it turljcd out, Kaplan's iindings on the relationship of race to the doctor-patient relationship are sornewhat different, Her group discovered that minority yatients who sec minority doctors have lower scares on the questions of participation than tknsc who see white doctors, My point here is not to quibble about conflicting findings by different researchers-this happens rt>r.ltincIyin clinical research, espccialfy when the results are rzat drarnatlc-but to call alteration to a hcror that is probably far more important to the doctor-patient rcl2ationsFxip than abstract ratings of participation: aamcly, their time together, GouperPatrick found that the duration of a patient's relationship with his physician is linked to higher a>articipatory ratings, c a ~ ~ ~ p a r a btof ethe samc-race ratings. Kaplarl also found that the amount of tilne thc patient coudd spend with the doctor helped detsrnrinc the participation score, fn that study, visits of less than rwcnty minutes appear4 ta be too brief to invohe patients effectively in treatment decisions, Mang these fines, another analysis by Kaplan found thaf physiciarls who have a "high-volume" practice are rated as less participatory than those who see fewer patients per day"! Thus, in this era of rnanaged care's fifteen-minute doctor visit, what much of the research 011 attitucri:really teUs us is that most patients attack

rnore value to the amount of time they can spend with their doctor than to the dc~ctnr'srace or ethnicity FVficn paticnts see a different doctor each time they go to h e clinic, as is oAen the case with l~unicipalclinic patients arrd those whose IiMOs l~avehigh turnover, it is ekren harder to establish can~fort;and trust,

Academic Performance atld Racial Preferences

In 1976 Bcmard D, Davis, a Harvard microbiologist, four~dhimself at the qicentcr of the debate about racial preferences, That year lie pcatbfished an essay in the New EftgirrnrfJ O L I I F I U of~ il/ledicif~ecluestioning whether "we have keen properly balancing our obligalion to promote social justice with war yrinlary obligation to protect the public inriere~t.'~~~"n his book Sta"~mr over Bioln~r)h i s elaborated on Harvard Medical Schut>l'saffirmative action strategy. The lnedical school Jean, Da\fis said, purposely dcprived the medical school faculty of objective feedback on student performance on part of the Natio~~al Board exam, a test g i x n halfivay througll medical school: "In the past, the ranking of our students in the National Board Examinations, in each stri3ject, was presented each year at a fdculty meeting, and any department fiat fell! below third place in the country virtually apologized. Shorl)y after the new [minority admissiunsj pmgrane started, the dea.tik office q~tict1.y. dropped this armlluaf report.''I33 Eventually>Davis reported, even the National Boards bince replaced by arm exam called the United States Medical Licensing Examination) "rrcame optional in some cases. I le cited the specific exarnple of a n~inority student who failed the boards f i e times but wham the dean still decided to graduate, AAcr the publicatioll of his essay Davis was attaclced by I h e Harvard Crimson, picketed by seudents, roundly cri"crcized by the dean of the medical school and verbally assailed by soPx1.e of his colleagues, Uhixnatciy, some other colleagues rallied around Davis, pointing out that loweri~lg standards would unkxirly put into doubt the qualitications of black and other nlinoritics WEZO would he admitted in the future, Davis wrote his essay in 1976, but alrnost twenty-five years later the admissions practices he brought to fight still go on in medical schools

around the country. Acceptance rates for minority students have fang been higher than for whik applicants with sim2ar qualifications, according ro the Association of A~~ericaaz Medical Colleges, In 1979, for example, a minority studen.t with high grades and board scores had a 90 percent challcc of being admitted to medical school, while a white applicant with comparable qualifications had a 62 percent chance, By 1991, tbc last year for which AAbfC has published data, the figures were 90 percent versus 75 percent, Conversely, a low-scoring minoriv ap~aficanthad a 30 pcrccnt chancc of ad~nissionwhite a similarly low-scoring white appticani had a 10 percent c&lance. At the Uniwrsity o f i ~ u t h Florida Cullcge of Medicine, fc~rexampie, black applicants with a B-phls grade point avcragc (GP111 had a roughly 33 percent chance o f admission between 2995 and 1997, but white and Hispanic applicants with the s a m GPA had only a 4 to 5 percent chance. ""atspite the passage of Proposition 209 in 1996 in California, minority applicants to some of California's public medical schools were two to almost three tixnes as likely to be admitted as whites and Asians with c~nsictcrabfyhigher grades."-2.5 Iltlring the y a r s 11387 through 1993, the medical, school sf the University of California a t San Diego was applying racial preferences, Students accepted through aflirmative action had fdr lower premtcl course grades and MCnT (Medical Ccrklege Admissions Test) scares fhirll their fellow white and Asian students. More precisely, the average student accepted through affirmatiw actions had scores comparable to t h lowest ~ n percent of his white and Asia11 counterparts. Not among those white students in f 992 was a brilliant computer science mdjor named lames Cook. Even though he had graduated Phi Beta Kappa from UC San Diego, he was rejeccctd by its medical school, and all the other public CaZihrnia medical scllzools to which &Icapplied. Cook's parents \Yere dumbfounded by their son's across-the-board rejection in his home stat specially since he was accepted by the Harvard Medical School. Moved to action, his kxther obtained copies of the academic rccc~rctsof the sttlde~~ts who tvere admitted to San Diego's medical school over a period of several years. (The race but not the names of the students ~vercmade arailable tct kfr. Cook.) With the scatterplots of

student scores spread out brhre him, Cvuk si~xvthat minority s t u d e ~ ~ t s with lower grades were distinctly favored over white and Asian students with higher grades, la t 994, when he prescxatcd the data to a rcgent of the University of Galifc3rnia rrarraed !Yard Csnnedy, he taerehed off' tlre antiaitirmative action campaign that ultimately rocked the s~atc.~J" Not only are black and Hispanic applicants Favurcd in medical school admissions, but h e y are ovcrrepresented arrrong studexlts who encounter trouble in medical school, According to the AAMC, they are mol-c likely to repeat their first year or drop out.'" For the medical school class adlxitted in 1984, over 20 percent o f minority students did not graduate four F a r s later, as is typical, Among white and Asian students, 8 perccnt did not graduate that year,'JVfn I996 the p i t u r e worsened across the board: 39 percertt of minority students were unable to keep pace, cornpared with 15 percent of nonminority students.')" A994 study published in the brdrrznl ofdae American ~WedecntAs~ciationfound that, in 1988,52 percent of black medical students had failed part 1 of the National Medical Boards (taken after the second year of medical school), over brzr times the rate of white students%which was t2 gcrcent. (Failut-c"rates for I-Iispanic stt1Qent-swere 34 percent, a11d Eor Asians 16 The typical path for students after graduating from medical school is application to a ~sicleacyprograjn in their chosen specialty. At this level there have also been different outcoarles, 'tractionsfor debate in courtrooms, classrooms and Legisldtures. lllstituting yrcferellces in order to enhance minority health, however, is a practical prcrposi"con that can be tested using rcal-world data. Thus far, the case has yet to be rllade that improving minority health depends on having mare minority doctors. It appears that racial prcfcrences represent an insfiicient way to increase the number of minority doctors-and thus minority health-for sebrera'b reasms, First, minority representation in medical schools remains M ~ G Ibelow ~ thcir repxscntatior-t in the general populatiorz, despite aggrcsshe admissions policics.fi"~ox-td, minority ~ c r u i t m e nhas t resulted in a two-tiered systenl of academic standards fbr ad~nission,This has created attendant y roblems: same potential nonminorit y medical studcasts have not been treated fi~tiriy,while sonle nninority students have elnbarked upon a career for which they arc ill prepared. Third, we lack cnmpelllirrg evidersce that same-race (minority j doctor-paeient relationships result in better patient outcctrz~es~ k matter who treats OUT nation2 poor and ~ninoritypatients, the fdct is that they tcnd ta havs multiyzlc, chronic medical conditions and arc. often clinically complticated. They need the best doctors &hey can get, regardless of race. Fortunately, inner-city poor and minority patients are most l&cly to get their care in high-volume municipal hospitals that are associated with academic meciical centers and thus have betfer access to resvurces and techa~icalsupport. 'They elrapfoy experienced physicians who perhrm hundreds of ahct same operations each year,"'" O.ifcrhalf of all p a t i e ~ ~hospitali7,ed ts irx major teaching hospitals in 3 "35 kvere w i n surecl, poor or minority*a Rand evaluation formd. Black and poor pezfie~~ts received better care in urban teaching hospitals than white and more afAucnt patients received in rural or nonteachkg wban l ~ a s p i t a l s ~ ~ ~ ~ But ambulatory care is a different story*TIlcrc are not enough doctors choosing to work in rural cgbmlnunity clinics and poor, inner-cit?~ neigkborkoods, In a rraarnbem of states, such as Florida, Illinois, North Dakota, Texas and New York, graduates of foreign lnedical schools represent one-Er)~~rth to one-half of the physician workforce in underserved areas.""California has approved legislation requiring its public rnedical

schools to Increase the number of training slots for primary care physicians and decrease slats for syecklists.'" Some rural ancl inner-civ cornmulzitics have used creative financial iaccntixs (for example, loan forgiveness, rent rebates, higher pay) to draw young doctors to their area. kVe sltnuld be promoting such strategies, not lowering standards for admission to medical school,"() As fir as patient preferences are concerned, again, it makes rrlore serlse to create mechanisms of health care coverage tlaahczizslare patient choice than to uperr the boors of medical schoals to unprepared students. Finally, we must not forget that the physician is part of a larger network of health carc providers. For some preventive care (such as vaccinations for childre11 and the elderly prenatal care, routine baby checkups and blood pressure surveiklance), physicialis are not even needed. Sgecially trailled nurses can help provide after-hours medical appointments and give basic advice over the teiepi~one,Public health nL1rsc.s or pkysiciaxs assistants cooperating with f ~ c ~chrches tl and cornxraunity organizations can deliver these services at least as effectively* Inner-city Fnosri~lsare now hiring health cducatars (idedly from within the community) to teach fciilow residents about diet and exercise, smoking cessation and screening for cancer, diaiactes and byertension. Thrse workrs also participate in outreach to get people into clinics for routine care, efforts that are so important because medically indigerrt people terrd to llnderusr available care, to show up in emergenq rooms for minor probletns and to delay seeking diagnoses br conditions like cancer u ~ ~ tara i l advanccd s ~ g c , Wile weli-n3caning groups like the AAMC ac'lvance the yxlestionable belief that minority health is dependent on minority pl~ysicians,cxyeriencc paints toward the virruc of expending e n e r g and resources on tfsc solutions ot1tlint.d in chapter I if we arc to narrow the health gap, 'l'hese include promoting health literacy, forming colnmunity health organizatiols partnerships and exparzding hcallh coverage to the uninsured. 14%at patierlts seern to want rnsst is a qualified doctor who will spend unhurried time with the~n* The racial disparities in health are rear, but data do not paint cor~vincinglyto systematic racial bias as a determinant, Nor does thc evidence suggest that racial preferences in lnedical school admissions are tlae remedy for health divaritks.

Therapy for Victims

HEY ~ ~ E L , Q D J, I EPEETwas ~ ~ ~ n n ~ i s s loof n niental er

r-e~adationand substance abusc services for the state of Maine, fr'r.om 1994 to the summer of 1999, she made it a priority to develop treatment servias for wcjmexa who, like herself3had been mistreated 3s chiXdrerr, Soon after Pect setded into her jsb,she told a gathering of mental health professionals: "1 haven? r-sccn o r heard anything that leads me to believe that a trauma survivor In Maine t s d v can walk into an); treatment fdcility . . . and be sure that she is going to be treated scriously."i And there are a lot of survivors. Maine" Office of Ziratlma Services estimates that 95 percent of the women who use the departn~e~lt's services were abused irr childhood.' Melding a~~tipsyd~iatry anirmrxs with the feminist-inspired "trauma9' naiovement, Pect established an Office of Trau~naServices within heragency. Chosen to head the Office of Trauma Services was Ann Jennings, who also had personal tics to the triletma movement. Her daughter Anna was scxually abused by a baby-sitaer during the yc.,-ars when Jcnnings herself had a sewre drinking proble~n,At age thirty-two, Anna hanged herself in a dlafifc3rnia state mental hospital. Jcnnrngs now lecturer;and writes a b o ~ ~Ali~na" k experien~es;she even wrote her doctoral dissertation on h n a ' s ordeal, blaming the lnental health system for her daughter's death since it failed to recognize that her problel~lssprang fro111 her sexual viajation in cbilidlIoorr2, No one would dare dispute that Anna, as a child, had been a victixn or that her death was a tragedy for her mother, But X seriously question

whether having access to ""lraum sert'ices; with their relentless harping on victilrahoad, would have saved Anna's young life, Nevertheless, the trala~naservies movement-based on t l ~ epremise that early trauma ir1evitably pmdlrces catas~ophicproblerrls neeclirrg special treatment-is gaining msmentuna. As the 1990s wound down, Florida, Massachusetts, New Hampshire, Ohio, Rho& Island, Texas, FViscarxsin and JVyaming were all considering establishing a trauma office in their department of mental health, In 1999 the federal, Substa13ce Abuse and Mrr~talHealth Services Ad~xinistration made $40 mdlion in grants available to applicants who wanted tu de\~elop trauma progralns for women. The National Association of State Mental Health Program Directors approves of this tread: ""PsychaXogicaX effects of violence and trauma in our society are pervasive, highly disabling yet largely ignored, [\Ye] believe that responding to behwioral health care needs of men, Mromen and chgdrerr who have experienced trauma should be a priority of state mental health programs."' The trauma movement crystal1ized in the late 1.980swith the publication of the best-selling Tht. C;suroge ~"nHeal. Thc i?r>crk fuclrd the false (repressed) memory craze by irahrming its readers, "If you think you were abused and p u r fife shows the symptoms, then you werc..'"Vf"op ps.;.chi-;rts i s t s are nttt the only ones who have sought to legitimize so-called repressed memories of abuse, At the schofatily end of the feminist spectrum is the Harvard psychiatrist Juditi-rLewis Herman, who insists that "the ordinary response to atrocities is to banish thein from consciuusncss:" Remembering, she says, is a prerequisite for healing. But is it! What is the evidence? At bottom, of course, child abuse does happen. But for unknown reasons, only some people an: left with gaping psychic wounds. At stake. uitit-natcfy is the issue of how those who have been so staggeringly betrayed by trusted adults can go on to lead productive, untormclated lives. CI-alIdren are certainb not responsible for their maltreatment at the hands of aclrxlts, brat when they grow up they are crccoux~tabieh r the present and must strive to deterlnine their future. Trarn~xa-sensitivetreatn3es^rt, as we will see, threatclas to k e p them mired in the past, This chapter has three interwoven sections. First, T focus on Maine as a case sru* in the development o f trauma-sensitive services because it

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is brthcr: along than other states in establishing these services, As we wiU see, Maine has not based its innovation on sound clinicai principles, Fur example, there is no sotid scientific base to support the t w i n assumptinns that recollectiotls of trauma are inevitably accurate and, more important, that focusing on them is ~~ecessarily beneficial. Like the consumersurvivors in Chapter 2, proponexlts sf the Maine plan challenge the exg3ertise of professionals. Further, the Maine philosophy holds that trauma patients, mostly women, have been rnade sick by tl7e brutali.e)i of fatkcrs and brothers-in other wards, by men, !&'rites jrrdith Herman: """Thestudy of trauma . . . becomes licgitianate only in a context that challel~gesthe subordination of women and childrcn:'h This last ncatiaa-of being made menta'ldy ill by a n oppltlssor-links the smry of Maine with the other two parts o f this chapter, The latter sectiolls explore feminist psychotherapy and multicultural counseling, what I call oppression-based therapies, The ""oppression fkerapists" bring h e i r politics to the couch, teliixag patients that psychological troubles arise from Jiving in a sexist or r;;acist society and evert, encouraging them to bccoIrle politically activtr. Sadly3it is thc therapists themselves, despite their good iaztentions, who may be the victimizers,

Precursors of Maine's Victim-Oriented Approach ?iditionally, distress related to childhood Qrrru~tlahas been considered one among many adult mental conditions, I3ntients who wcre abused ais children werc treakd an inpatient wards sr in clinics along with ever)lonc clsc with a mental problefn or ilhcss, Asking about aspccr;s of a patient's c!lildhoud-ideally in a nonleadialg, open-ended manner-was a standard part of the interviewing grsccdurc, The clinician, fc~sexample, might ask the patient, "\%m you werc growing up, was there ever any belai3vior in PUP. fb~llibthat p u considered--at the time or nob.; in retrospectabusive or sexually inappropriate?" But in recent F a r s many therapists have come to insist that acitairs who w r e viftimized in childhood =quire sp~cializedtreatment, An early model for trauma-based treatment arose in the mid-1980s in the form of specialized wards in psychiatric hospitals. These wcre often

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run by all-female staff aad usually treatcd only wo~nen.Semetixnes staff were expressly hostile to male psychiatrists; a number of my male colleagues have told me they were asked to Ieave if they entered the trauma ward-to conduct admiraistratiw business with the head nurse, for exaxnple-because the staff fcared their presence would ""uysct the In the era before mallaged care, patients used to remain in the hospital for about a rnonth in places like the Sanctuary, a private inpatient trauma program near Philadelphia. Sandra Bloom, the psychiatrist wbo deti.1ops.d the Sanctuary?wrote a book called Crew t l ~ t gSatzcttmry in which she endorses the importaalcc of remembering and then reliving longrepressed traumas. Mera~oriesof traumatic cxperiertccs, she wriks, ""must be assumed to hiwe at least son~cbasis in reality*'" Unfortunately3ker assumptions are flabred, First, a therapist cannot automatically assume that f'c~rrnerh""banished" n ~ e r n ~ r i eofs child abuse are true, Second, if true, it is not rsecessarily the case that they are at the root of a person's current sytrlptoms and life circumstances, Adults who are depressed or unfulfilled, far example, often attribute their current misery to prior stressful cvcnts, magnifying dwir importance in retrospect. Arsot forxz~ativi:(or deformative) c q e r i cnccls arc .irasrly comylcx, Child abuse takes place in a dcvelogmental context that generally includes other f o m s of maXtrec3trnent and degrees of Pdanify dysfunction, disruption and &eprivation.Vii:onc~ert;ely, rrnany people who experienced sewre early traulxa have no ~xeasurablepqchopathalugy as adults.9 Good data about the incidence of chit4 abuse and the effectiveness of treatments arc hard to come by. Askimg adults about childhar~dexperiences can prodtlce reports that are filse or grossly exaggerated; on the other hand, the researcher who =lies an self-rcports can also miss cases, Few researclaers have even attempted to prc3clzre decurraentirrg evidence, f n addition, nrost studies arc cross-sectional; ideally, researchers would perbrrn hllo\ikf-upanalyses to drterrnine whether chitdren who have endured actual events grow up to dcvejop probIe~xs,f;ranted, this kind of research is enormously time-consunnilag, hut it is needed, Without it, we know little about the scope of the problern and cannot discern which innovations arc worth replicating on a farg@rtherapeutic scale,

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721e notion that it is beneficial is dweH on early traunta rtlsts on shmiX;~rlyshaky ground. Many people who talk about their traumatic cxpcriencrs do no better than those who arc more stoic about their pains1{j Sometimes, in &c[, they feel nzore depressed and function at ;i lower level than their less emotive counkrparts when evduated o.bcr time,'X'hc saInc dynamic has been observed in patients recovering from heart attacks and in war wteritns, E-folocatlst surviwrs and bereak~edspouses," Moreover, traumatized people who talk relendessly about their anguish often end up driving away friends and loved ones, thc very people who form their support network.l" The treat~nentof adults with childhood trauma is also a poorly researched area, Most infornative are analyscs of interventions with ne~cvly traumatized adults, Stt~diesof rape victims x v e d that after a fi~re-week program in which the wrncn were toid to reexperier~cethe rape, the majority no longer had nightmares and other sympoms cornparecl to rage victirns who underwent sttpyortlvcl counseling,L%~wn here, howewr, not dl of the patients benefited, underscoring the fact that there is no onesize-fits-all method of coping with trauma, Sandra ESloon~offers no data about treatment stxcrcess at the Sanctua r y Nonetheless, she is optimistic that ""some of the insights we have gaitted h m our work with s m c of the most injill-cd warriors in the hattXe of life can conbibtnte to an interdisciplinary, interracial, trlansgendered, global conwrsation leading to a new, more humane and attainai~levision for the cel~turiesto c0mes"14 Though she may wax grandiose in places, one cannot read Bloom's book and doubt that she is sincerely concerned tlor patients and fc3r social justice. But good intentions are not enough to keep somc patients from burrowing deeper into themselves, especially when they are encouraged, relentlessly, to focus on traumatic experiences. My colleague Dr. G told me about such a patient, klerie W+b a i l c he was making daily rounds in a big-city emergency roon.2, be bras called to see Vtlerie, a wornan in her mid-twenties. He entered the room to find a large woman, perhaps five-feet-ten, in a fetal position on a gurney, clutching a teddy bear whose narne was "Strength." At the foot of the gurney were two large shopping bags tl.rat contained her wrIdly posscssiuns,

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"r'alerietold Dr. G her story while still huddled in the fetal position. Star had exyerienccd years of depression, storxny and unsatisfactory rctationshigs and preoccupation with ideas of suicide*klerie attributed her syrngtslns rc:, the fact that she had bee11 sexuaUy abused by her fidrher over a period of several years while a teenager. She exhibited "no need for rccovered memories:' Dr. G said to mc, because "she had never forgotten:' Despite her distress, which was considerable, she had attended and finished a two-year collef";"and bird a reirsollabty good job, an apartment, and a car, Thcn, six morlths bcfore, she !lac%b u n d a new therapist after a disagreement with her istd one, The slew therapist made the sexual abuse and the crianiazat culpability of' her father the central h c u s of their sessions, As the theri3py progressed, VaXerie told Dr. G, the abuse came to dominate her thetughts. She became more depressed and thouyht about suicide cotlstantl?r, Vdleric eventually had to be hospitalixed and spent several weeks on a syecial inpatiertt innit that bcwrd an abuse. And focus she did, After discharge, Dr..C recalled, she fourtd herself nu longer able to w r k , too absorbed in her memories and too depressed to do much clsc. 'tralcric dcscribed persistcnh intrusive thoughts about the prior abuse that secnlcd t s preclude any ability to focus on the ""hre and noMI13She was unable rtt makc payments on her car, which was repcrssesscd, and she had just been evicted fro111 her apartmear+thc precipitdnt for the ER visit, The practical difficulties of getting her appropriate care were formidable, As it was, she would get just a day or so of observation in the hospital, a new script for antidepressants and help finding both a new therapist and a shelter to go to, But Dr. C cvas ewn more. dismayed by the trampling of Valcrie's fragile defenses by her prior therapist and the inpatient unit. "The truth did not set her Cce:" l)r: G remarked, "'at feast not when dcli.crered by fire hose to a person who was barely holding it togcther.'"~ G kvwondered whether the therapist, who was tsl~reachable when he called Gam the emergency ruonl, considered the treatment a success. Does the story of Valerie W, a aclassic case of regression, mean that all patients are harmed by places like the Sanctuary! No. In het, with short

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stays af one to &vs kveeks, thanks to managed care, there is probably just enough time for stabilimtion and =spite but not enough for regression. As publlic mental health systems like Maine's, howeve& im-pore the dmbious tactics of the private ""saratrraries:" such casrai~l~ies may become more frcquen t,

La2ea1 hfelodie Peet took the reins as x22ental health comn~issioner,one of her first acts was t o appoint several lrauma advisory groups (TAn,hople ~ v h ocntcr relationships with baderlines describe being whipsawed between feeling desperately needed one rnolnent and

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hatefixlly rejected the next. In the notorious "black-and-whitc?"world of the borderline, friends who are idolized one day are degraded the next. Borderlines are fdmuhxs for the ""mixd messages'3ehc.y broadcast, As W will see, the push-pull nature of borderline pathology rneshes nicely with the consumer-survivors' plan fbr revising Maine's mental health system.

The Cult of the Borderline The borderlines of Maine want to he competent therapists and needy patients at the same time.. They want therapists to Irskn, but if therapists don't give the correct response, they arc clalded insensitive ur, worse, accused of being out to silence survivors, Maine" sconsnnzer-swrvivcars don't think they should be blamed if they are difficult to deal with because, after all, the system has traumatized them, "I-heydon" rvant to be regarded as fragile and ullable to rnake good decisions, yet they will have the unwitring therapist walk an eggshells lest she trigger a rnood swing or evcn a total personality switch. The Maine patients don't want to be "psychiatrically labeled:' but they do want to be recognized, a c c o ~ n m ~ d a t eand d given disat>ilitypayments or jobs as peer counselors. k e t aazd her colleagtses essentially coliucled with their confused patiellts by allowkg them tu define like terns?;of their therapy. \mat these patients needed instead were professiollals who encourage accountability and define [tmlits,In short, Peel ancl ctslnyav have fashioned a system that looks very much as if it were designed by borderlines for borderlines-a prescription far disasltl~, Borderline patients are among the most difficult to treat. Expcrienced therapists generally limit the nu1azbe.r OF borderlines iaz their psactice because treating them is so time-consuming and emotionally drahing, These patients need solid, well-trained clinicians, but: in Maine they are instead seeing low-paid therapists, nzarry of who1l-n have no more than a bachelor's degree. klaine's crcdentialing process is among the ~nclst rclaxect in the country. "Almost anyone can hang out a shingle:'says Linda Breslin, the retired superintendent of the Augusta Mental Health Institute.

203

'"fie therapists sf trauma victims are guod-hearted but have no scientific

groundil~gand are poorly supervised. I really worry about these patients; they are at severe risk for being rnalf~ated:'21 Theory and dinical ohservalion suggest that the person with bcrrderIine personality disorder has sustajncd a number of mqor developmental insults and that these have led to deficie.ns;Pet; in the must basic t a s k of iliving. O~aeis the inability to self-soothe, Most people can tolierate painful ernotional states-sadness, disappointment, anger%foss-by telling then7sclws they'll get through it,by thinking back on other storms tflhiy have weathe~cdor by figuring vlrt how to distract themseXvc.s in neutral or productive ways. The borc-liedine cannot. A horderlil-sepaticrte may cling to someone she idolizes as her savior only to rcvife him when he (inevitably) disappoints, Lynn k%rilbiarns,a woman who says she had ""worldclass symptoms of RPD:' describes herself as follows: "[It is lilce] having been borrr without an emotion~alskin-with no barrier to ward off real and 23ercelved enrotional assaults, What bvauld be a headache in emotional krms for someone else was a brair~tunfor for me. This ~"eaction was sgontancous and rlclit something that i chose, , . , Feelings swept over me like one of those nets used to trap animals in the jungle-black, clark, persistent, and, at times, suicidal feelings. Those feelings, accolnpanied by flawed logic, fdatasics of rescue . . . created chaos i13 min6."22 The chaos can lead to frightening expaiences;. \%en overwheln~ed by stress, the borderline may feel numb, as if she does not eve11exist. This may drive her to mutilate hersell: ""Iclt as if I was isolated fi-sm the world, dead, with no emotior~sat all," a self-abusing woman narned i.indsay told Mariiee Strong, author of A Bright Rerl Screctnr. 'The blood told me X was alive, that I could feel. I needed to see those bad feelings bleed away. Also 1 couldn't cry; bleeding was a different farm of cryingeWZ3 Orlncr patients burn rhcmsek\rcs with Eir cigarettes or score their bodies with razor blades car fingernails, Selif-mutilation typicalfy begins as an impulsive act but may becon~eritualized over tirxie. In addition to alleviating borderlines' misery, effective treatment for people with the disorder would ~ d m c the e high social cases of the condition incx1rr-r.d &rough drug and alcohol abuse, AIDS and other cornmu-

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rzl"cabic diseases, gaanbling, domestic virsjence, teen pregnancies, runaways, overuse of the courts and revolving-door emergency room visits and l~ospitalstays, Fortunately? there is a promising approach cdled dialectical behilvisral therapy, Ileveloped in 1991 hy Mitrsha Lirzehan, a University of FVashington psychologist, dialectical therapy has earned the wcfcome distinction of having "creels ~igarauslyrested in clinical trials"z4 It consists of weekly fifty-minute individual therapy sessions and two half-hour group therapy sessions per w e e k The individual session is devoted to the objective dissection nf a particularly difficult event from the past week. Ancient frdlxmas are not discussed, and n~enloriesare not actively retrieved. In painstaking detail, the patient and the therapist ycrft~rma kind of behavioral yostmortc~rz,going over the chain of cvcnts leading up to the episode (for exaxnyle, the patient's angry confron~allan with her spouse or her rejection for a job), reviewing various strategies far dealing with conflict, and examining the reasons the patient felt unable tu employ thcrsc strategies, The virtues a f dialectical tkcr-al-1~ underscore the hazards uf the bfaine approach. Whereas the dialectical approach helps patients define bsumdaries between themselves and others, the Maine therapists encourage dependent attachments, unlimited contact and, in solnc cases, even physical touching by the therapist (a thoroughXy unacceptable act it7 convendonal gsychokogical treatment). m e r e ~ the ~ s dialectical appwach instills impulse control and rcsgfor~sibiiityfor soothiitg orte%self, Maine's inEanii4izing hcrapists rush in to gratie*~"Irrdwhereas the dialeaicat ;ppproach tries to solidi^ a patient's sense of independent self, the Maine therapists talk of multiple personalities and encourqe patients to become swalisbwd up in group identity.

Mulf iple Personality Disorder: The Perils of Suggestion A g ~ adeal t of evidence demonstrates the power o f suggestion itr shaping people" tnemorics. Elizabcfh Lc~hus,a L'ni~rsitysf PVdshington psychdogist, has done nunrerous studies in which she is able to "create" Inerno-

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ries in college-age volunteers. In one experiment Loihrrs had subjects view a videotape of an alrtomc~bileaccident a d then asked t b ~ n 2" B~o w fiat was thae car going vvlaen it ran the stop sign?" and "Hoiv fast was it going when it passed the barn?'Yeb~o f the subjects noticed that the film contained ncitber a stop sign nor a barn. Suggcsti%silityalso plays a role in another phensmerzon popular with Maine therapists: mwlti.gsle personalitr)~disorde~A person who has bear diagraosed with multiple personality disordcr possesses an ided device for evading accountability and for n~aniprrlatingothers, Being a so-cailcd multiple gives the patient permission to bfarne her actions on an allernate personality or to conveniently "forget" them. Trauma therapy teaches pat i c ~ ~tot sbc jvary of atriggel's? events that will cause them to switch to another yzerssnality, It often b a c k f i ~ s as , orre therapist told me: '"These patients hold the hospital staff hostage by saying, 'If you do that, you are going to trigger me, and then who knows what I'll do!' They know it ties us in knots; we don't want to stress them unduly, but we don't want to be tricked into not holding them res13ansible,'l Haw common is multiplc persclnality disorder? l'hc Bingnosfic n t ~ d Statktlml iWarrurll ~ { M e n f n Disordem l (DSM)says that about t pemrit of the general poyulatim is afflicted, but many ps~rchiatriststhink that rage", comparable to the prevaZence of scl1iz~)~lhre11iai1 is to0 high, In the 19ROs, at the hei$l: o f the multiple personality craze, "rnt3s.z-psyclnialrists had probably still never mct a patient with the diagnosis:'wrote thc psychiatrist Peter D, Kramcr-" h e n fhe infamous "Sybil:' sukpiiect of the f 974 bes~seIIer,may have been little more than a profoundly unhappy and suggestible wcrman. Indeed, Paul McIIugh, h a i r m m of the fahns E-4ofil;ns University Depart~ncntof Psychiatry, is skeytical that the persmalliv condition exists at all except as an artifact of the therqist's suggestion. His advice: ""Close down the services [designedto treat it] and disperse the patients to general psychiatric units, Ignore the alters, Stop k~kjllgROTC'San them."'l" Mtlltiple g3ersonaili.t.ydisorder can certainly seern to tnanifest itself when the right incentives are yresellt. "The answer to how much of a multiple personality problcn~there is has ttr do with the kind of gratification it brings," explains William Anderson, a psychiatrist at Massachusetts Geaerdl X.Iosyitale" ' T a e n a person is toid that she is one of a special class

Tllerapy for Vactints o f patient, given sympathy and therapy sessions and nvt really expected to

act responsiblgr, you'd be surprised how many patients with multiple per-

sonalities there can bc on a \yard or in a clinic.'" tiZ7lzer1 childhood abuse has occurred, a guud therapist will help the patient use that experience as one explanation among several for her current state, rather than as a jrastificatisn for destructive bchaviur, "'The biggest prohlern [with Maine's approach] is that patients are sedoced by the emphasis on trauma,"' says Dennis Ratnel; a ps);chologist in private practice in "vtratervillc,Maine." h t n c r points out that the patients are rnade to feel that there is something special about being a victim of child abuse. ""X has beelz turned into a cause c612brc by well-meaning bul; sverzcaIous therapists and administratars and patients \nr11o embrace the identity of surcyivor:' he says. A history of sexual abuse becomes the currcncy in this system, cxplainir~gunhappiness and getting attention. I must point out here that suggestion works in either direction. h therapist who tells a patient that her memories of abuse are unreliable can be just as powerful a figure and as dalnaging an influenccl as one who tells h t r that recollectiaras will return if shc just 1-emcxnbcrshard enough, I suspect that a large fraction Gif the female patients in my drug treatment clinic probably did experience some fc~rmsof sexrxal violation as childreit, Only a hancll'ul of them rnelltisn this when Y first meet them, though many mars relate the experiena during subsequent visits, My strategy is to acknowledge the patient's painful past and its unDirness, but r~ ernpt~asizethe here and now, I focus un accepting resycrncibility ibr currmt behavior regardless of the past. If the woman is in a destructive relationship, getting out of it (temporar2y or permanently) is generally what our sessions arc about, After ail, how can she be a rcsponsible rnother if she exposes her cfiiddren to such ciilaos, disrcrspect and, often, danger? How can she expect to stay sober if she opens herself up to such miseryvn 117y experience, patients typically concede these truths, arrd mast uf then1 acterally fo1I0~vthrough on our step-by-step strategy If a woman wants to talk about "why I get myself into these situations:' we can do that. But first, I help her get herself our. Maine's system takes another approxh entirely, In short, it has come to resemble a cult. ""Tileir world\?iew is that you are either a victim, a per-

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petmator or a ~scuel;""hnderson tells me. Critics, of course, are cast in the role o f perpetrator by stslte offieiais and therapists alike. In the borderline's bllack-and-white world, evil is penonified by the outside universe, and good comes only from withirl the group, Because bordedines yearn for dimction and acceptance, they may "u cattracted to strong feaders like Peee, Anderson says. The role of survivor is indeed enticing, bar it provides instant and unconditiux~aiacceptance, automatic inti~nairyand a paternalistic leader who wilt be readily idealized. Breaking away from this fellowship would be difficult for anybody, but it is marly impossible for someone who derives sdf-definidan. and companirsx~shipfrom it and who is terrified of abandonment. According to Roger PViason, a psychiatrist who has run an inpatient unit at the Bangor Mental Health Institute for twenty years, "It is damaging to patients to focus on their victimhood instead of their strength."lg Wilson describes a patient he has known since tile l"a80s, For a while the patient was dctinlg rather well, holding down ii job and livir~gindependently, ""Then, around 1990, when Bangor therapists got into the ~nultipfegcrsonality disorder craze, she got involved and regressed tragically>"he says, Subseqtlerktly, W i l s ~ nrecalls, the patient has been ""hosgitatized many times and refuses to leave because she now can't trust her "alters" not to hurt her*''

The Rise of Oppression-Based Therapies Psychotherapists continue to take the "victiln-sensitive" approach into new t c r r i t o ~wizlt two new types of therapy-feminist tl~erapyand multicultbaral counseling, which are R~urlshiflgin public and urtiwersity mentat health clinics and enjoy a secure niche in graduate-levet training programs. Multicultural counselors populate high schools and social service agencies. Both therapies typify the postmodern approach, assu~nirlg that the rrtsst important cl~aractetisticof a patient is her mernhership in an oppressed group7 and that her pslrc~hologicaidist~itssis a product sE conflict between the individual and the sexist and racist society in which the patient lives,

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Feminist therapy and contemporary mtttticultural colsnscling have their ideological roots in a disciplilze called colnmunity mental health. Community psychofa;>gists,in the wards of the psychologist Dennis R, Fox, ""hve long insisted that preventiorl of mental disorder must begin with w i d e ~ y ~ and a d expansive social regk~rmin order to prcwnt the emotional distress and men~taldisturbance in our socieq that is due to dehumanizing social influences such as opy ression, meaningless work, racism and sexisn?."30 Feminist psychotherapy retlccts this doctrine. Accordil-tgto Laura S. Brawn, a prominent "fearinist practitionel;"" psj~achologistand author of Subversive Dialogues: Theory in Feulinist Thcmpy, feminist therapy is "one aspecf of the feminist ~voIution,"The therayy functiom, writes Brown, '?to subwrt patriarcli~aldominance a t the most subrle and ycawerftll Ievcfs, as it is internalized and personified in the lives of jpatients,i"" ln the dystopic r-calm of feminist therapy? there seem to be only victims and perpetrators. Irt Brown's scheme, society is dysfun.r;tia~-taI, not tii-te patient, And because a wom-nan's mcntal state is believed to r d e c t the position of wanren in society, any syrnptcrrnrs of depression or anxiety are seen largely as the prodrrct of a society that is hostile to women. Thus, a feminist therapist is oAen ~ t u c t a n rto suggest to a woman that she mlght bear soxne resgox~sibilityfor her problems at home, in her relationships or with her self-image. Such suggestions risk oppression of the patient by the therapist. The therapist" '""power to mme and define reality serves to deeper1 arxd exacerbate the pawer imbalance ;and ineqrrltkcs between the tii-terapist and the ciient:"rown writes, 'This isact establishes the authority and expcclise of the therapist in ns uncertain tcrms,""2 Wdl, yes, A patient turns to a therapist for help precisely becalase he h ~ the s expertise to take a patient on a guided expfsratisn of rtle s e l k t h c true task of ysycl-rothcrapy But that avenue of exploration is foreclosed wherr sources of discambrt are so readily identified as exterrzal and imposed by a male-dominated sociciy. Consider &c way this feminist tl-rcrapist introduced herself to a new patient, Ruth:

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a social and political pcrspcctivt: to my ul~derstandingof you and your life. I believe h e cazlses of the prctbferns many wt~nlenbring to cc>unselingare external. In general wcjmen are not vafxxed by our society arrd this creates psyclsologa'cal clistress. ' r i - i ~ ~ ~ r i r yXr sbring ~:

What follows is a comilressed excerpt from a session between this Cuurtseding lrrtd therapist and patient as it appears in Case Apptandi 12syt;j~o 2 herapy: KuFiH: I kllow it sot~ndssilly, but I Just feel Fat, cstd ar-ad ugly these clays,

73r twirtisr: R ~ t tluab' t s the t v q tve are trained to think, And if a wclman looks Itke I-tetl, she feels like hell because she i s devalued in oral- society. . . . Our bodies are: the single most powerft~lasset we have in our society You migfit try thinkng about yclur bveight by discc~veringways ir-i which being i-at affords ye)u gc3wer in your relationships ax~dbegirl t c ~love yourself just the way yotn are. REI'I'EI:That ~ ~ cthe~ easy, n l easy for me cithcr. . . . f forced rnyscll to look, at my body and learn to love itsi4

' r i - i ~ ~ ~ r i r yXr s~~I :O W ~11. wasn't

In this srlippet we sec the therapist unduly influencing Ruth, The issue may seem mundane (body image), but nu matter what the patient brings to the therapist, the goal should be helping her determine, for herself, how her best inkrests can be served. Because our feminist tl-rcrapist happens to resent thc notinn that some. bodies am consldcrcd m o ac~ ch?prabfe than others, she encourages her patient to ignore ionvention, She assumes that wanting a slim or shapely figure is rcally about pleasing men and so tclts her patient to "tove" he): body. ?"o the feminist therapist, Rrttk"s dismay aboka r her body must be a product of conflict with "gender-role expectation"-that is, thinness. While there's notrhing jvrang jvith Iwing unc's overweight body, a paticnt should do so because it makes sense to her, 170t to her therapist.

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Fernlnist therapists also fret &out 11-71:"power differcntial'yn the t h e r a p i s t - p a t i ~~lationslraip.To raetltratke this differential, the therap ist actively disc2osc.s personal details about herself-an unheard-of technique in traditional tllerapy, which maixltains bwndaries bemeet1 doctor and patient in order to preserve the former's objectivity. Some have even struggled with whether to accept yaylnent for their services, since doing so, they fear, enforces the notion of hierarchy. The ferxminist therapist is also an activist. "PVe are awarc of r h t 1Imitalr;ons that racism, sexism, classism, anti-Semidsm, ageism, hcteroscxism, ablebodiedism and other oppressions impose on groups and individuals: reads a statment of the Feminist Therapy Institute in Portland, Oregon." In order to "dIy ourselves with those who arc dedicated to building a suciety Gee from oppression; the institute urges therapists to get inifolwd in "public education . . . lobbying for legislative action and other apyropriate activities:"fi Some feminist therapists even encourage patients to take political action. "I-Iow would you encourage [your patients] to take social and politica1 actionl'hasZts a texthook written for students studying fcminist therapy.37 Feminist therapy is gaining ground, Crlrlduate training programs in clinical psychology offer specialty tracks in "feminist practice:' and university-run student health centcrs routi~~eby hire feminist therapists to counsel undergraii~rates,Fledgling clinical psychologists taking the Xicensing exam are expected to study feminist therapy* The board review preparatory mallual of the Association for Advallced Eaining in the Behaviorat Sciences devotes an entire section to it, The A ~ n c r i c a1)sycho~~ logical Association Eeatrrres feminist therapy along with time-l-ronored and well-studied techiliques in its information to the public on the kinds o f psychotherapies conducted by ~ ~ s y c l ~ u l a g i s t s . ~ ~

Just as feminist thrirai~iststhink of their patients as battling the g>atriarchy? ~Tzulitisialturalcaunselors assulTze that their patients are stmggling agahst racism. Multicultural counseling grew out of civil rights-era efforts to in-

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tegratc black men into the wokfortle, A 1950 artide published in the Jotsrno/ of Clinical Psycholog~fintroduced the topic of psychotherapy for minority patients. Tided ""The Negro Patient in Psychotherapy;" it raised two perkctly legitilnaie questions: \%at is the llature of the relatio~rshipbe~ e c annlinarity patient and a white therapist he pcrceivcs as rincist? And can a white therapist respond to a inierurity patient as an individual rather than as a member o f a minority group?" In 1950 the forward-looking goal was to move beyond race and treat all paticnts as individuals. %day's multicultural counseling, in contrast, argues for treating nrinority patients as members of a group rather than as unique individuals. Elaine Pinderhugbes nicely captures this persyece i in~ her book Understatrdiutf?Race, Ethnicity null Pnwer, A psychiatric social worker, Pindel-hughes condemns psychotherapists who practice what shc calls a "white, tniddle-class madcl of tkerapy'9that "'has valued individual xspsnsibility, looking inward, sc1f-ernclcrstanclIngand insight, personal growth and change, resolution of depelldency needs, verbal and emotional expressiveness and thinking problems through.'%ccording to Pinderhughts, ""Non-white, non-middle-ciass cuttures'hxny bc more likely to benefit from hands-on al?pmaches, advice-giving and ""cange effc~rtsdirected tscvard the envir0111ncnt-"40 Her recommended approach has ~xcrits,but those have nothing to da with race. As a psychiatrist warlcing mostly with srrbstance-abusing minority patients in wshington, D.C:., I generally cmphasizc advice-gking aimed at makil~gpractical cha~~ges in thc patient's environment, so as to reduce the stress and boredom that increase the risk o f drug use and crime. 1 did the same thing when 1 wrked in New Flk'tiven,Connecticut, ivhert. my drug-abusing patients were mostly white, Like Eerninist therapy, multicultural counseling promotes activism. At the American Gourrsc.ling Association (ACA) f 993 world confe~-cnccin San Diego, many members voiced approval of the mow to incovoratc social activism into the formal d e of the yrokssionai counselor, A new division called Counselors for SociaE Justice rccentiy joined the ACA with the goal of "eradicating oppressive systems of yowcr and privilege [and] the implementation of social action strategies."" In 1998 the association published a hook called Social Action: A it4r*1rldnteforC:lluilreicrr.,c.42

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Activism is not only 1^Ortherapists but for patients too, 1x1 his textbsuk LWalticmrltr.lmbTfiet-npj),Manrxei Raxnirez of the University of Texas at Austin. says that the ultimate goal of therapy is to encourage patients to becolale ""nnulticerlttrral a~nbassadors'Ear the develoynzent of a couperatijje and peaceful ~nulticulturalsociety."4YTRey are to go forth and become ""mulricuittrral educators and peer counselors for those who are suffering from feeling different and from lnistrlatch shock:' Mismatch shock, according to Ra~nirez, comes from Iilring in a society that has made one a "victim of conformity or assimilation."lg I suspect that no matter what a patient tells Ramirez, he will manage to diawose "~xismatchshock." But before counsciors can become actikrists they musk undergo the counding equivczfeazt, of sensitivity training. The ""lufktlti~ultura1 Counseling Cunapetencies'2devised by the Association for Mu?tticukturalCounseling and Developmellt state that "White counselors [must] understand how they Illay have directly or indirectly benefitted from individual, institutioxral and calltural racism:" The ideal cousaselors, according to the association, '"re constantly seeki~~g to understand themselves as racial and cultural beings and are actively seeking a non-racist identity." Some multicultural practitioners are utterly pessimistic that caunsclors can help patients unless the coranselars themselves first submit t s thesc soulsearching exercises, At the 1998 ACA tvorld conkrence, Kobbic. 7, Steward arrd her colleagues at Michigar~Scale University in East tansislg focused on the experiences and attitudes of counselor-trainees. They puzzled aloud over "ivhite trainees who, far reiisolls we do not quite understand at this tixne, are perceit.ctd as mralticktlturaXIy competent by miraol-ity clients befotlre receiving mu2ticulturaI counseling training or course worfe)'46

Teaching Multicultural Counseling "My students want to know E s w to do black tl~erapy,fispanic therapy arrd so on:' ccr~rrplair~s Morris L. Jacksctn of Bobvie Stak Universitb one of Maryland? historically black colleges. "I certainly don't know what racebased therapy is, What I teach them arc prilzciylcs and basic techniques that apply to human beings--to be respectful, open-minded, curious and caring:'" Jackson is right. Fie has taken on an uphill battle trying to per-

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suade the American Counseling Association and his colleagues to soften tlmeir race-conscious stance. Multicultural cnrlnscling is a rapidly expanding field, In the 1970s and early 19803, fackson explained, only a handful of counsding ~rairzingy rograms required ntulticul tural colrnseling courses, but now as ma~lyas six in ten prctgranlr; require such a course, and almost all offer at least one. obtain Zicenslarc. at the state fcvd, many states require a course in multicultural counseling. According to ehe National Board of Go-ctnselor Certification, many a p r f i c a ~ ssatis+ the Kquirement for learning about the "social and cultural foundations of counse1ingY%ytakintg a rnlrlticultural c ~ m s e l i ~CtOgU ~ S ~ . ~ K Jackson is dismayed by the attitude of many o f his ~raulticuttuial caunsctor cctlleagucs who "a~sumethat students who are not minorities are racist, and teach with that assumption in mind,'"Th;kt is the asslamption o f Allison Cummings-McCann o f Emporia State University in Kansas, who urges counselcrrs and trainecs to adopt "Mrl~iteawareness" and "unlearn racism."" I t is also the assumption of David Stone of Northerra Illinois University, who frets that counselars are unaware of their social privilege, TO bc effectiw cortnseiors, Stone bcIievcs, they must ""cumttat the detrimefttat effects of privilege,"" f i e Journal G~zinselirlgand R r v e l q ~ t e n (the t major journal in the field) devoted an cn tire issue to ""privilege" and ""opy;ression9~n ccorrnsefing called ""Racism: Healing Its Effects."~~ Indeed, s o m corr~-rselitrgprogrilms are literally educating the next generation of therapists to impart their own political worldview to patients. Says Edil Torres Rivera, on the counseling faculty of the University of Nevdda at Reno: '"any of my strnde~sand clients suffer from Litring in a sick societyy."" ?t is hard ts imagine how strrdcnts specializing in multicultural c ~ n s t l t r n gc m escape feeling pressure to conform to the political leaniilgs of their teachers. The only way, I fear, is when the traillees walk into grad schoc~lon the first day of dasses dready believing that the damirrarrt culture is the root of psyclropatholog~r.By the time they graduate as therapists, these multiculturalists will be so thoroughly schooted in the opprcssit~cw q s o f society that theyyl be able to read bias into virtually anything patients tell them. After all, as an ACA advocacy paper malces

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clear: ""'Z'hemajority of ccsunselors belong to donrillant groups and have b e n the recipients 06 less u p g ~ s s i o n[ t h m their siiients].. . .They am rccipknb of privilege due to their socio-racial identity in society and within the profession; they have iniluence dare kn their ri urnerieal n1?1jarity."53 The tcrrthoolrs, toe, assume that racism infects trainms, C'alinseling the Cr~lnrrullyDifierent a s h the reader, "As a me~llbcrof the White group, what responsibility do you hold for the racist, oppressive, and discriminating rrtaxlner by which you yacrsu~~alr)r and professionally deal with minorities!" The textbook's authors insist that "without a strong anti-racism training component, trainees (especiallyWhites) will contlntne to deny rcspansibillty far the racist system that oppxsses tbcir minority ciiientse"54 This encourages irnprcssionablc trainees to expect that minority patie~ltt;wIW be hostile, It also inculcaies the Lcirld of guilt-ridden attitkxde manifested by "Paul:' a subscriber to the multicultural co~unselinglist serve: "While it remains important to bring experiences of oppressed pcople to the fore, I believe this rnust be balanced by engaging members of privileged groups in a zonwrsation about their roles and respmsibiiitics regarding [homayhobia and Inetcroscxismj, . . . 1, as a. wizits: person . . . sni~stidenti6~racism as 1x1~ disease as I ann part of an institution that gains power by it.'?Ss This is just the kind of sentiment that prompted Kobert E, \Vubbalding, professor of counseling at Xavier University Ixr Ohio, to tremark, "I am convijlced that the multicultural nlovement is largely negative. I suggest graduate students ask thcir professors to spend at least as much time on the positive asi3ects of society as they do on racism, bigotry and prejudice"'~"T-Jsw can counselars help their patients owrcorne outlooks that are bleak and hopeless, \brubbolding wonders, if young counselors are being trained to see patic~~ts as set upon by such dark socic~ai.forces? ""I can't think of a better way to hold minorities back than to teach that ever)lcc?neis biased, p~jhaclicccl,racist and bigoted, It engenders an "I can"' worldview in clients," he says, Another problem with multicultural counseling is that it often requires the acceptance of blatant ellznic. stercutypes. Consider the following exarnples frorn textbooks on multicultural counseling:

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216

PC, M,12.

The worEdvic~vof the culturally different client baits down to one important question: "ai"IThat rnalces you any different from all the others out there who have oyyrcsscd and discriminated agdinst rne?'Sy The Asian American's "greater social awareness causes himiher to be somewhat mcprc scnsitivc to racisx~~ ancl to oAen react with otyertanger s r rnilitancr.'"'" ""Time is not a firndamcntal variable [for Tlispanics]; do not ask a [Hispanic] client reasons for being late to thcrapy."59

"Avoid linkkg mental problems [of African Americans] t s parents' behaviors; ttlesc problems result from envirvnrncsl~l conflicts in society'"* Culture, sFcourse, has a considerable influence on personal identity but it is only one infiuence alnonp a great man): and it does not predictabty determine the nature of one's distress nor the formula for its alnclioration. By evaluating cultural influences the same way they evaluate e~reryother inlrluence-individz1aIfyt one patient at a time-therapists can avoid thc confusisn that is thc inevitable by-product s E the group stereo~gingfc~undin various textbooks, 'To some ilcgree, of course, all counseling relationships are "cross-cult ural" relationships. No person can fulty ""knr3w" tthc reality of another's He, no n~lattcrhaw s i h l a r their I ~ W S may be in crkttward awearance, A student named Regina innocently succumbed to that confusion. Here is the message she posted on the diversity coglnselitlg list servc that I. was on. 1 a m a graduate student in a counseting prcpgram, . . , Is it difficult to work with fir patient] whe)se values and beliefs may be unknown 01-crliwrpletely different from yor.>rrrs? f have a dilemma, 1 have lived Xorsg enough in the Middle East, Italy, Uclgiurn, Poland, and othcr curantries so that 1 consider myself an individual with a mui.ricuit;urat background, Every client in n ~ caselrl~acf y will k3e an indivldrxal with a different; backgrc~u~~d froln m y own, Do you

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rhirlk it will be possible 631-me to be an effccttve cot117seIorwith such a backgr~und?~:

Regina's query cpitornizcs what ntulticufturalism in therapy has wrought. Here we have a dedicated student with a wonderful breadth of culturat and linguistic experiences who has been made to worry needlcssly. There nlust be some counseiingfor~ntilni can memorize, she is thinking, that will tell me what to do q-tlly er-lrflirbarkgrozand & A and my clierltS etllllic bnckgruund is B,If so, Rtglna is doamed. Afier all, cwry client belongs to numerous groups, "If does not take rnuclil imagination to recognize that the nurr~berof co~rabinationsand permutations of these groups is staggering;' notes C. H. Patterson, el~leritusprofessor of counseline, at the University of Illinois.~~ Indeed, as Patterson points out, attempting to develop different theories, methods and techniques for each of these groups w u l d bc an insurmountable task. Why haven't Kegina's professors taught her that the individual, with l~isunique emotions, cugnitions, actiolas and syirituaiit~~ is the focus of counseling, not the group to which he belongs? Why hasn't she learned that a kccn i n t e ~ s in t her patients and her kindness to them transcend the specifics of culture? How helpft~lis the rratzlticbaItaaral yerspective, we may ask, if it obscures the true purpose of therapy: to help patients observe themselves, understand and take responsibility far their choices and appreciate how they unwittingly get in the way of their own happiness and accomplishment.

The 2000 American Counseling bass&rca"a~P"rlb~z Conveatiksn "The ACA allows multicultural therapy to be a front for a political agenda:? Stephen PITeinrach, professc~rof counseling at Villal~ovclUniversity, told an audicnce at the 2001) ACA annual ~ricctingin Washington, I3.C." Therapy should be devoted to self-determination, kreinsach emphasized, ltoe to cataiaffing the ways in which the client has been held back, not to urging him 10 pblrstle social r c d ~ s s Sdf-awareness . is not a

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by-product of actiPlism; if anything, activism takes the ~OCIISoff the gaticnt. Victiln politics, he said, has "hijacked the profession of counscling; propaganda aborrt social justice now dominates our journals, our textbooks, caexr curriculurx~arid our co~~ventions." The 2080 conkrention,which 1 attended, offclred dozens of sen-linars on social justice and race-coi~sciousncss~ In one, caled "Promoting Social Justice Through Counselor Education." the audience was instructed to attend to the "advocacy needs of the community:'b" One example g i ~ ~ ewas n marching against welfare rrfomm. Another seminar focused on "the growing atvareness of how various forms of social injustice and oppression impact cfients' hnental health:' C o ~ ~ n s e l swere r s exhorted tc? address the racism and sexism that 'kcsntinue to be perpetuated in our societ)r,'""" Such practical mauers, frowever, are riot what rnany nnulticultural counselors have in mind. According t s list-serve member Chris, r o w selors should get involved, in their role as culrnselors (rather ban as concerned citizens), with issues such as "misuse crf nuclear power:'"consumer exploitation$ ""ecological ahuse" and the ""zcchnologicat o"rpsu1esccncc. of American warkers."~G Admittedly, a therapist must soxneti~nesassume a dixdive role, Many tirncs the clinician needs tu make the first move to jump-start a rcluc~antpatient on the path to taking charge, W e n one of my patit11ts said that she was molested by rr male nurse in a local enrergency raorn but was uneasy about reporting him, I put her in touch with the inuspitaX ombueisman, She then werzt un tea pursue her charge of abuse. h o t h e r patient couldn't read and was too exnbarrassed to do sonlethirlg aboxrt it, 1 helped her contact an agenq that would teach her to read. Qnc must be carc-f\nl,of course, not to let thc patient feel too comfortable and to assume that the therapist wall step in and take care af things. A posrusc of rescuing the patiel-lt has risks, as Professor Clemmont bTontrcssof the American University notes: ""The problems prcsented by niany clients cause some counselon;. to feel that they somehow must do for them what [the clients'] parents [and] teachers have been rrni3ble to do:""7 Not ollly are counselors, textbooks and the profession itself biased in tlae eyes of multicdtzrral corznseJars, but the patients themselves must be

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assessed far signs of bigotry as well, According to Julie Ax-tcis of Ceori;ia Stak University in ihlaratii, counselors must attend to their ""cknts' prejudicial attitudes and ctiscriminatory behavkrs."" H tf ey don't, Allcis warnerl art. audience at the 2000 ACA conference, their patients>syeEmological difficulties will never be resolved; they are, after all, linked to their bigoted attitudes and hehaviors, she said, I wondered how yatients>pcrsoarat prejudices were linked to the reasons they sought couraseling-ta improw a marriqc, to become more assertiw, to colne to terms with a Isss, 721e association required convention speakers to discuss diversity issues, If you wanted to organize snc af tlte special &l!- or half--$aytmining sessions during the three-day event, you had to first submit a written statement to the ACA attesting to the following: *

Your knowledge level of culture.icfivcrsity-rc1atcd information

on the topic you were pmptlsing Steps you w~orrldtake to avc~idprcgnting stemotypicaf i~nagery *

T h e nature and relevance of the case cxatxzples you would use,

inclrlding universal, or lack of universal, applications of the cases across culturessg It ~vvasthe naive speaker, alas, who resisted this assault on his professional autonamy. The assusiatiul~asked everyone in the audience to fi11 out an evaluation forrn and to rate the speaker on such things as "openness to discussing and answering questions on diwt.stt).iculte?r~-e issuese"7Q

Patients as Casualties Multicultural cuunscrling has not been put to any kind of test, Few, if any, o f the muleicui.rural clzunsding ""experts" have dexnort.strated their rechniques at professional rnectings or videotaped them (as is the collegial tradition in clinic& practice.), let alunc empirically validakd tficm.7' I could find no controlled studies of patients wherein half are randolnly assigned to mufticlrltura~counseling and baZf to co~~ientional counsciing. Such re-

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search, of course, would first r c p i r c that nlt~ltictlltilralcaunseling be defined and oyeratianalized, a task its p w o n e n t s have );ttt to undcrtakc, Nancthctcss, it is clear tltat one of the defining elements of multicultural counseling is the instillatior~of race-consciousness, A number 01my colleagues have told me of clinic directors who insist that black Faticn~tscan be treated ordy by black counselors. Others concede that perhaps the sounselors need not he black, but that the patients must stibf he cduca&d in oppression, FOr exampie, the federal Center for Substas~ccAbuse Prcvtaxticrn produced a booklet callcd An Africazl- Centered hfotbel Prevent ion for A f i - Z c a - Youth a t High Risk." The essays in the booklet say that black youngsters must first be made awarc o f their oppression if they are to avoid or overcome addiction, gang involvetnent and teen pregnancy. A West Dallas program for ninc- to twelve-year-olds is described in the booklet. As part of substance abuse prevention education, the students are taught Afrocentric myth: "Youths are taken through a study of African history. . . . They [learn about] Africa as the oriffinof architecture . . .astronolny . . .mathematics and libraricsf4" Mlhen Lauretta Omeltschenko worked as a cou~lselorin restdelltiaf programs for addicted women in the Midwest, Afrocentrism was a big part of the treatment programs, "One program f thneltschenko says. ""The African Anierican staff encouraged Africail dress, African values and Kwanzaa:' Anctther program put the black patients on a van ulzccl a week and sent them off to ""hack pride, errrpowermerst and recover). meet;ing, whether or not they wanted to g01))she tells me, Typically, a b u t half the black patients objected to the ififpican thcmcs, Ornettschclzka says, "They would say Kwanzaa isn't African, it was macle up in the sixties by an American,' or, My skin color has nofiing to dc3 with my recovery."'74 Meant to elevate their self-ateem by emphasizing black pride, the sessions ended tap ililstructing the women in how they had been victinls of racism, which mally found a silly distraction, Onr~eltschenkosays. But unfortunately, sonne used the lessons about oppression as a wedgc issue. ""Thc supposed fascism of the white staff and some of the other white patients

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became sotttethirng else for the black patients to focus on,'>she noks, '"l'he women should have bee11 workillg on their addiction and other problems, but instead we spent many hours on poinfless, divisive arguing about who discrimix~atedagainst whom." Wbrse, a number of tlze counselors encouraged the patients to view the social dynamics of the residential pmgram through the lens of race, Omeltschenko's descriptiorl of group process reminds me crf my tenure as a staff psychiatrist on inpatient wards, Like her residential program, these wards uftcn cn2phasized cocrpcration within a community of patients as an. essential part of the tklerapy. bye knew that the Gequent efforts of patients to blame staff and other patients NTereustlalty a w'dy to divert a ~ e n t i o nfrom the harti work of changing themseliws, MIe were constantly pointing this out to thenz; that was part of the therapy This technique works only when the" entire staff shares basic assurnptivns about therapy; o t h e r ' ~ ~ i sthe t , patients can play them off against each other. Onleltschenko herself eventually became so frustrated trying to pfotect patients from being inculcated a b u t their victimhoad-and being forccd to hire underqualified staff to rnect racial quotas-that she q~iil, I too encountered Afrocentric thelnes in counseling during my tenur.cl as a staff psychiatrist for the superior court in Washington, D.C. Our patients had ccrmnzltted minor crimes to maintain a drug habit and had bctn court-ordered to drug trtatment, Almost all ~~e1-c. iifrican American, most ofthcrn in their twenties and tfiirtks. On a daily basls most of their clinical contact was with courzselors who believed that self-esteen"~ was the key to success, fomeko~vthe patients were supposed to absorb self-cstecm by participating in ilfrocentric exercises, not from achieving anything in particulafllzere were "group thcrapies'7n which the men used craycjns to color in stencils of the African ccpnthent, Meanwhile, a good &action of the men wcrc" ilditerate or did not lxwe a GED, h l ~ ~of st the other patients, even if they had a GEB or high school diploma, had n s technical skills, And that svas wl-rat they wanted, To a man, each wanted to get a GED or learn a. trade like plumbing or electrical wiring and join a union*They

PC, M*12.

were struggfing to be polite when 1 asked them what they thought of the program: "Mickey Mouse" and "a waste of our time" were common chari~cterlzatians.The clinic director and I wanted to bring in tutors and even set up apprenticeships in plumbing and carpentry for sonlr patients. The counselors, for their part, did not lift a finger to help. If the situation wasn't depressing enough, our patients had no choice but to remain in a third-rats pro gran^, They were court-ordered to that particular one. 'l;;> be sure., the fact that they were rcctuired to attend was a blessing, That PEciorrs opportunity was sqrranclc~d,ho~vetier;on feel-good exercises conducted by mullickrt ttlrally orknted counseIors. Zronicalfy, the 1iCA 'YC:ode sf Etl-nics'happears to proscribe much of what multicultural ctlunseZars are doing, Tlae code specifically says that "counselors should avoid imposing their values on clients" and that they "should avoid exploiting the trust and dependency of clientsi'" To treat paien ts with the intention of getting them involved in social aciivism and teaching them to assume roles as multicultural "educators" and "arnbassadors" i s is ggrstss violation uf these codes. 'The job is not a buUy pulpit to hrthcr our awn social agenda," says Professor Briar1 S. Canfield CPPthe University of Louisiana at Manroeex "(G~~lnseIors should always respond to the issuer; presented by the client,'\ays Clcmmont Vontress of American University>'hot: the issues which trouble them, the counsclorsf?~ Nowadays multicultural counselors who work on college campuses must feel right at home, After all, campuses are grotlnd-zero for the cxccsses of political correctness, Many inssame that the era of"spcecl~codes is over, collapsed of its own ludicrous and Orwellian weight. But they are wrong. Xn The SI~aR~litt k/lZivenity3Alan Kars and Harwy SiJl~erglatedescribe racisln eradication exercises that are required for entering freshmen. A central goal of these progranzs is to root out ""internalized oppression:" as elaborated in the education planning doalments of most rtrriversities, At

brake Forest Gniversity I In li391rdj, one of' tltc fcw events

ctesigx-rated as "manciatory" hk>rS'a-eshrnanorienkation was attelldance

at Blue Eyed, a filmed racism awareriess kwrksl-rop in which whites are abused, ridiculed, nlarlc t t fail, ~ and taught helpless passivity so

Tllerapy for Vactints rhdr they can identi* with "vgpersibn of color for a dayy'3n Swarth-snoreCollege's dormitories, in the fail cbf 1998, first-yearstuder~tswere asked to Line up by skin cc~lor,from tightest to darkest, and to step fcjward dnd tdlk djnout how they felt concerning their place in that line. Indeed, at ajrrlose afl ol orir campuses, stlncle fo:orlraof rraoral and poiliticalr re-education has been built ir~tcrfreshmar1 orie~~tation and residential programming,

These exercises have become so "commonplace that most stude~lts do not even tl-rinkof the issues uE privacy rights, and dignity jnwlved;'" say Alan Charles Kors, professor of history at the University of Pennsyl.sa~aia.?Vsit too far-ktched to wonder whether an insufficictlef-giapoiogetic heshrnan would be sent to a multicuBtural therapist for a rr,~ortl intensive, grivratc. session of racism eradication?

X-Eoalosexualsalso I.~avea place on the muiticuXteural therapist" couch. Kelley, a graduate student in counseling, thinks that her colleagues must appreciate the existence of a homosexual culture. "In order to effectively counsel g i y men and lesbians, one needs tn recognize that their experiences living in our society rnay be different from other clients' experiences:hshe writes on my cliversity list serve." "GB1 KeUey reflexive1y fixate on "heterosexism" as the cause of unhappiness in her gay patients! She might decide to gct special credentialing from the Chicago Cexrtcr far Famay FIealtb, home o f the country" first certificate prugrarrr for LBGT (lesbian, bisexual, gay and transscxua2) counsetilizg.8"' Kelfcy is right that humusexuals haw ""cxpericnces" different G v ~ n those of straight people by virtue of their same-sex attraction. But the persona[ meaning of these experiences Is urticlere, shaped by the myriad strivings, conflicts, fears and wishes that each homosexual person, indccd all sf us, harhsrs. kcognizing this should not require special training un the part of the therapist, In fact, formal certification risks gkettoizirag the nzental health needs of gay peaplc and creates the illusion that special kno~~lcdge is required. This could lead a patient to deny himself care by a

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perfectXy competetlt but "uncertified'9hcrrayist. Conwrssly, it could lead young therapists to thiilk that perllaps they arc unqualified and hence to turn away patients whom they could truly help. A good therapist elicits each patient" one-of-a-kind constellation of thoughts and emotions-a veritable psychic fingerprint-and in doing so creates cr?nditiur~sfar the patient iu slmuw how hc secs hinlself and the world and t s tell what he thinks he needs. Orje of those needs may be to clari6 his sexual oriea~tatican.Though the nature-nurture debate surrounding holnoscxuality is unresolved, it is fair to say that same-sex attraction and gay or lesbim identiv exist alang a continuum. At one pole are individuals with a strong biological predisposition; at the other are individuals who have deliberately chosen a gay or Icsbian lifestyle, Many other nlen and woruren &ill sorrzewhere in bet~feera.Inhabifaxlts of that middle ground who are living as gay may be ambivalent about their scxrral orientation, Some seek psychological help to resolve that ambivalence-some with the goal of feeling Erlore colrlfortable as homosexual, others with the intention of expirtrixag heterosexualit)i, Both goals are cli~llcallyvalid, and some-though by no means aflof the patients who have set out to achieve them have been succcssfiab. Nc~netheless,the treatn~entof ambivatent znen and worncn who seek to " c ~ n w r t "to hetemse~ualiyhas sparkd angry debate among therapists, "All lnental health professional organizations rake issue with those who claim success in 'healing' gay merl and lesbians:' proclaims Bob Barret, former president of tile Assackation for Gay, Lesbian and Uiscxual Issues in Counselinge8'Other counselors have called such therapy "prejudicial:' suggesting that therapists wdat to conwrt unsuspecting patients because of their own hdltm0phobia.8? 'The accusations of prqttdice, hawevep; go bath ways. The American Psychological Association, for example, says on its general information web site &at sexual orientation is never a choice and that tkrapy cannot change it," Richard Isay of the hrner-ican Pvchiatric Association%Cmnmittee on Gay, Lesbian and Bisexuaii fsstlcs calls therapists who have treakd gay men and lesbiaxas who wish to I I S L I ~a~heter"~~sexual ~ lifestge "abusers of y~ychiatry~"~4 The National Association of Sociai Workers is-

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225

sued an official statcrnent denouncing so-called cmversion therapy (also called reparative therapy) and discrturaging social workers from referring patients to therapists who are willkg to see patients for that puryosee8" For men and women confused about their sexuality, the battle obYer cr?rrtvc;.rsicrntl-zerapy only heigl-ttclss thcir anxiety. If they are I ; L I ~ I U C ~ ~ enough to encounter a pxjudtccd therapist of either variety-one wl-rcs thitlks homosexuality is a pathology to be cured or one who is too 6-10~s.dminded to aclmowlcdge the mutability of sexuality-their- genuine dcsirc to cxptore themselves and. e)lgcnchange (or maintain) rhcir sexual bchaviors will be stifled in the name of gender politics.

San Francisco General Hospital San Francisco Gcr-ternl Hospital, the major %cachinghospital of tile University of California at San Francisco, is ho~neto the illost pro~ninent multicrrttrrral program in the country. Now called the Cultural C:ompcten= and Diversity Prc~gram,it bcgan in the 1970s when the hospital crcated a speciaity ward h r Asian patients to addrczss the language barrier fixed by many recent immigrants sceking mental health services. By c m tralizing staR members who spoke Asian Languages, the hospital f o ~ ~ n d that it could improve service--indeed, wlrat little quality research has been done on some forms of multicultural therapy has found that overcomillg language barriers is probably the only significant benefit. A. few years later a sirnilar program was started for non-English-speaking Hispanic patients; it too was a sr~ccessf~~l effort to extend care to ~rnderscrwd popmla tiuns."" But victim politics soon replaced the language 13arrier as tlne rationale for specially designed treatment. African Americans, gays and women also wanted their awn units (or ''teams: as they were called), T r d q each new patient lzdxnitted to the psychiatric service at San Francisco General is assigned h, a treatment team specializing in one of six specific groups-African Americans, Asians, Latinos, gaysilesbia~~sibisexuals, women and FiIV-positive individuals. Each teanl is guided by a "curriculum:' which specifies the proper procedures For treating members of the group, AX-

tflough staff members and patkrtts are not rigidjgi segregdted by groupt I was told by the head of the p y c & k " ~ t ~ e r v that i c e the hospi~aldocs n~lake an effort to have at least half the staff and patients on any given &am be homogeneous.8' The only patients without a team dedicated to them are white male heterosexua3s. The Black Focus Team is a striking example of multicultural therapy Merely in order to qualifjr for a job on the tearn, sotrle nurses, social workers, a r k d i e s and afl-ner no~lpkysicianstaff members have ta be certified by the San Fr;mncisca Civil Service 11e~hnm~7"rhire~ed~1i -lists/mninhlthi rnag00669,hrmI. Decen~t>er1.5, 1996. 17, Giddy5 II, Reynoids, ""E;errewt>ldto the Pxrnericdn College of EyidemicrlogyTerith Arlnuaf Sc1e.ntkfic Meeting Prt?ceedings:\lf~t~ulscf Ej?ldenzio/g3, na,2 (199931: I 19. 18. It. A. F-lal~n,S, M,'Teixtsch, R. B. EPotheni>erg,and I. S. Pihrks, ""xcess lleaths from Nine Chror~icDiseases in the United States, 1986," &jr,ur.rrrld rf ?lrc7 ,?nicrz'car~:2ilel-iit-u/ R~stirzi#~inn 264 (1990):2654--59, Hah1-a and his cofleagt~es(who arc from the GDG) report that 52 percent of all deari-ts in sire Tinrted Sr,~eesin 1986 were drtrikuldble to 9troke, cortlrtary heart disease, ~liabetes, ~brorlicctbstructive i7ulnronar)i disease, iturg cancer, txeast c d ~ t ~ ec~borectal r, cancer and cfironlc liver disease. Many ctf tltese dearins, they write, were :?revencalzle, The rr1itdifiat7lc: risk fdctors include srnoking, aicnhoi abuse, sedentary hfesryle, obes~tj: high rhofestcrol dl-rd fnifurc to tise screening tecbrrielues srrclz as mnmn~ogriapkyarid Pdp smears, bVlsen i spoke to Dr=X-lahn err1 k4dy 22,2000, he cc-rnfirmed that this cc-traiirrsionabout pre\ventnl?le deaths remains valid fcturteen years later. Ajso note that the C1JC estimates that Inore than 80 percent of the excess mc>rtalityobserved anlong mirtorities im"r.xccss'" flienns the amourlk that exceeds that R ~ S ~ ~ V ~ IC I IC C III Iwhites) ~ is due to seven causes: cancer, cardiovascular disease and stroke, substnltce akttse. diabetes, accidents, homicide, infant mortality ancl AIXJh, The course OF most, though nor all, of these cor~dlriorlsis rnctdifiable by the irldisridual, and substarice abuse is a coniptetely self-directed activity; see www.~dc,gov/~~l/~~d~~nif-re~tth.ht~~~, 1 C), Q U O Fin T~ Assclcidred i)res~,"Kiskor tSearh in Men wlfh High Blocs$ Pressure Is 1-oundto Vary by Region:" NCW York Tzrrr~s,Jdr~riarvA, 2000; Meir J, Stamyfer, Frank B. Flu, JoArlr~E. kfarrsun, r l d., ""BrimdryI'"rea?entiorrof Coronary Heart Uiwdse in iVc~menThro~rghDiet ntzd Lif.ect).icr:'ilkw Brglrrrril lourrrai c,,/ Mecllciilr 341 ia(i00l: 16-22, 20. Mirady "Ti1csmpsclr1-l;t~1Iiit~ve~ '"l$ba~ldortlilg'Race' as n Van~bieirz Y~iblic14enXth Research-An ldta Whose Time Ha3 Ccame:2n1e1iicnt? J U L ~ ~ I I Cc$I I Pirbirr XIe\~ernhcr17-21, l"j?S), 23, PhiIig Cole, Eltcnbsth tleirell, ancl. RrscS Itodu, "Moneyhangers in the Ternplc;" I)>itJenriclk(?gy l l , no, 1 E200il): 84-40. 24. Mary Anne Mercer. letter to APMA Go"~(3rlling CCIU~ICLI merrahers, October 26, 1996. 25, SclUy ZierLer; speaking ~ 3 the ~ 1 pdnd '"lnequdlily in Contat: Studying Ettecfs of Pa'eiglzborl~ooci Corrditiolzl and Social hliciea csrx Sudoeconc~micand RaclaVEthrxic flisparities in Heakh" at the 126111 drlntaal rr~eetingof the Arnerlwn Public S?ealth Association, WasI?ingfon, DC,: November 1 t ~ ,1998, 26, David G, i%rhitei%, C,hrolil~llt1$1ligh~rE~I~in~ti~)rr cmfiue coIIi)qtly, quy/99ic1rmhi.t)3.htn1~response y7il.i;tedSeprember 7, 1999. 27, Kohert Brtxi;lehole and Ruth Ilonit,~,Ptrbiii- X-leri.itli 111 the C:rossrr~nds: Arhzeirt'r?i~"~~fs mxfiii" ~~rnspecis iKew York: C2ai51kridge C:rzi~ersityPress, 19371,

28. C.-&.h, ivinslow, """Thetlntilled tieids of Public IXeaithP Scwnce S1 i i9201: 20-31, SO. 29. lnstitutf of b4cdicjne*T/ze F~~tttt.e ($ Pitbl~tFIea/th :liC2.*cl~l~ington, DC: Ndli~lldjPicaden?? Prcsi;, 1988t , 41). "Cnft~rrunntely,"write the qmpathetrc authors of Puftltc Hcnlfti ul tire l;r