Social Workers Speak out on the HIV AIDS Crisis: Voices from and to African-American Communities

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SOCIAL WORKERS SPEAK OUT ON THE HIV/AIDS CRISIS

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SOCIAL WORKERS SPEAK OUT ON THE HIV/AIDS CRISIS Voices from and to African-American Communities

Larry M. Gant, Patricia A. Stewart, and Vincent J. Lynch with Willis Green, Jr., Darrell P. Wheeler, and Ednita M. Wright

PIRAEGER

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In order to keep this title in print and available to the academic community, this edition was produced using digital reprint technology in a relatively short print run. This would not have been attainable using traditional methods. Although the cover has been changed from its original appearance, the text remains the same and all materials and methods used still conform to the highest book-making standards.

Library of Congress Cataloging-in-Publication Data Social workers speak out on the HIV/AIDS crisis : voices from and to African American communities / Larry M. Gant, Patricia A. Stewart, and Vincent J. Lynch, with Willis Green, Jr. . . . [et al.]. p. cm. Includes bibliographical references and index. ISBN 0-275-96093-5 (alk. paper) 1. Social work with Afro-Americans. 2. AIDS (Disease)—Patients— Services for—United States. 3. HIV-positive persons—Services for—United States. 4. Medical social work—United States. I. Gant, Larry M. II. Stewart, Patricia A., 1950- . III. Lynch, Vincent J. HV3181.S628 1998 362.1'969792'00973—DC21 98-21658 British Library Cataloguing in Publication Data is available. Copyright © 1998 by Larry M. Gant, Patricia A. Stewart, and Vincent J. Lynch All rights reserved. No portion of this book may be reproduced, by any process or technique, without the express written consent of the publisher. Library of Congress Catalog Card Number: 98-21658 ISBN: 0-275-96093-5 ISSN: 0-275-96094-3 (pbk.) First published in 1998 Praeger Publishers, 88 Post Road West, Westport, CT 06881 An imprint of Greenwood Publishing Group, Inc. Printed in the United States of America

The paper used in this book complies with the Permanent Paper Standard issued by the National Information Standards Organization (Z39.48-1984). 10 9 8 7 6 5 4 3 2

This book is dedicated to the memory of WILLIS GREEN, JR.

esteemed colleague, faithful brother, loving companion, and loyal and trusted friend; a proud, African man, who dedicated his life and work to making the world a better place for those whose lives he touched. His vision, mission, and commitment to his people living with HIV and AIDS have helped them in countless ways and have inspired us to "Keep on Keepin' On." Rest in peace, our dear brother. You are sadly missed and your spirit will live on in us and through us.


A better model for examining what is going on with HIV in communities of color is not related to race . . . but to social realities that are legacies to slavery and segregation. — R. E. Fullilove. (1996, Spring). HIV among African Americans. Harvard AIDS Review, p. 2. Understanding the HIV epidemic among African Americans requires an examination of how factors such as poverty, disease, and the constant threat of racism combine with the virus to kill. — R. E. Fullilove. (1996, Spring). HIV among African Americans. Harvard AIDS Review, pp. 2-3.


Contents Preface Introduction 1 HIV/AIDS and African Americans: Assumptions, Myths, and Realities Larry M. Gant, Willis Green, Jr., Patricia A. Stewart,

xi xiii 1

Darrell P. Wheeler, and Ednita M. Wright

2 Social Work Practice with African Americans with HIV/AIDS: Challenges to Mind, Body, and Spirit Patricia A. Stewart 3 Strategies for Effective Intervention with African Americans Ednita M. Wright 4 The Challenges of an AIDS Service Organization Executive in Harlem Willis Green, Jr. 5 When Silence Equals Death: Advocacy and Policy Perspectives in AIDS and African Americans Larry M. Gant 6 Community-Based Evaluation of HIV/AIDS Services for African Americans Darrell P. Wheeler

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49 63

81

99

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Contents

7 Report from the Washington Summit on Social Work Leadership and AIDS in African-American Communities Larry M. Gant, Willis Green, Jr., Vincent J. Lynch, Patricia A. Stewart, Darrell P. Wheeler, Ednita M. Wright

119

8 Where Are We and Where Do We Need To Go: A Blueprint for the Future Larry M. Gant, Willis Green, Jr., Vincent J. Lynch, Patricia A. Stewart, Darrell P. Wheeler, Ednita M. Wright

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Index About the Contributors

155 161

Preface Vincent J. Lynch

On Friday, October 11, 1996, in the Boston Globe there appeared a powerful op-ed piece written by Globe columnist Derrick Jackson entitled "The New Face of AIDS." In that piece Derrick wrote about the crisis of HIV disease in African-American communities in a way that I had not previously fully comprehended. Some of the stark realities he cited included the fact that "by the year 2000 more than 50% of all AIDS cases will belong to African Americans." That reality becomes even more frightening when one remembers that African Americans comprise barely 12 percent of the U.S. population. In short, we are rapidly approaching a time in which fully one-half of all AIDS cases will be confined to only 12 percent of the population. A few days after reading Derrick's piece I saw the above statistic depicted in a graph from the Harvard AIDS Institute. The graph makes an even greater impact than do Derrick's words because at the same time that we see a massive drop in the number of AIDS cases in the white U.S. population we see a massive increase in the number of AIDS cases among African Americans (Figure P.l). We also see a slower, yet steady, increase in the number of Hispanic AIDS cases. Please study it; reflect on it. What do these trends communicate to you? What do they communicate about all of us in this nation — our leaders, our government, our institutions?

Xll

Preface

FIGURE P.l Actual and Projected AIDS Cases by Race/Ethnicity, United States: 1987-2005

Source: Foster, A. and Pagano, M. (1996). Leading for Life: The AIDS Crisis Among African Americans. Harvard AIDS Institute, 1997. Reprinted with permission of Harvard AIDS Institute.

In this book you will have the opportunity to read the passionate words of African-American social workers committed to providing HIV/AIDS care in their communities. Now is the time to understand fully the enormity of the crisis and to become part of the solution. Please join us.

Introduction Patricia A. Stewart

The planning for this book began when five social workers — four African Americans and one Caucasian — met to plan the first AfricanAmerican Social Work Leadership Summit on HIV/AIDS in February 1997. At that time, the originator of the idea for the summit shared that he had had a conversation with representatives from Greenwood Press about the summit and that there was a great interest expressed in a book by and about African Americans affected by HIV. Such a book would report findings and recommendations and would document the experiences of the African Americans who were planners and core faculty for the summit. More specifically, there was interest in having a book written by social workers from their perspective as professionals and as members of the African-American community. The contributors to this book are from various sectors of the professional social work community. Most are academicians, well respected for their work. One is executive director of the largest AIDS service organization serving African Americans in Harlem and another is a clinical practitioner who has worked as a clinician with administrative input in a family HIV program in a medical setting. Among the academics, there are gradations of interest and experience in community-based research, public policy and advocacy, and qualitative research with African-American women.

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Introduction

This book is not meant to be a scholarly work. The current literature on the subject, some of which is written by African Americans, addresses issues relevant to African Americans and barriers to effective models of intervention, some of which is cited. The unique feature of this book is that it is written by African-American social workers who speak out in their multiple roles. We are, first and foremost, African Americans, with all that that means for us. We have the experience of living in a society that does not fully value our strengths or our pain. We have each had our own personal experiences with discrimination, alienation, isolation, and internalized oppression. In short, we are aware of racism — we are keenly aware of it in its overt and subtle forms. We have the experience of knowing that it exists, unlike some of our sisters and brothers, and we often find ourselves in a dilemma about the when, where, and whether it is present in any kind of interaction. In our roles as mothers, fathers, brothers, sisters, daughters, sons, friends, and lovers, we feel the sting of racism as we see those that we care about on their own journeys in an oppressive society. We are also social work professionals. Our concept of a black extended family comes into play as we encounter the magnitude of this disease in African-American communities. The caring and commitment for our clients that all good social workers extend take on special proportions as we behold the faces in the mirror and see their withered bodies and wounded spirits. As we watch the numbers of HIV/AIDS cases grow in our communities, the alarm that we feel is matched only by the myriad feelings that tell us that prevention models are not working for our people. In attempting to understand this grave phenomenon, we seek to understand the problem. Where are our leaders on this issue? In fact, where are our leaders? Many have been slain, as a renewed spirit of anti-black, anti-poor sentiment has reared its ugly head like a sleeping giant. Racism is alive and well in the United States. Did we forget? The demands and negotiations and riots and rallies of the sixties provided many benefits for our people. There are now more African-American professionals than ever in the history of this country. Then what happened? Did we become complacent? Are we busy struggling to survive the systems that we fought to enter — dissipating the activist spirit and energy? Is it that we thought we had "made it?" The psychology of oppressed, colonized people is characterized by identification with the aggressor. In that regard, the oppressed, in this case African-American professionals, have choices: to forget that we are oppressed or to subtly oppress those who look like us but who we assume "just don't want to help themselves." How often has it been said

Introduction

xv

that black people "can make it if they just put their minds to it?" We have forgotten from whence we came. It is time to wake up. The alarm has sounded and not enough of us are listening. The system forces us to think and act in accordance with its values and beliefs instead of our own. We are an African people. A study of the strengths of our heritage teaches us that we are different — not worse than others, not better, but decidedly different. Because we have been taught that our difference is equated with inferiority, we may be blinded to the truth about our richness, our strengths, our contribution to the very building of this country. We must be mindful of the context in which we view ourselves. It is not possible to assess the circumstances of an African-American individual or family without seeing them through several lenses. One lens is the unequal distribution of wealth resulting in a disproportionate number of poor in African-American communities. In a society that equates wealth with worth, it is easy to see that being poor or nearly poor would denote worthlessness. Consider the ravaging effects of low self esteem and self-hatred and then imagine one who suffers this malady pulling him- or herself up by their bootstraps, as in the U.S. ideal. It sounds ludicrous. A second lens is the infusion of drugs into our communities resulting in unprecedented numbers of addicts. Our communities were already struggling with the effects of the "all-American antidote to pain" — abuse of such substances as alcohol, heroin, and over-the-counter and prescription drugs. The introduction of crack cocaine — low cost with easy access and unbelievably disabling — resulted in the disorientation of communities in ways that have further destroyed lives, families, and relationships and that have predisposed the vulnerable to incredible risk for HIV infection. The nightmare this creates for "helpers" parallels that for those addicted and affected by the addiction to crack. As professionals, do we become so overwhelmed by it and by our inability to feel gratified and effectual that we project our feelings of failure onto our clients? Not me, we say. Consider this, however: when was the last time we thought about a crack addict with disgust? Was it when we wanted to move swiftly to punish him or her, or when we readily agreed with a decision to terminate his or her parental rights "in the best interests of the child?" A third lens is the unwillingness or inability to tolerate differences among us. The HIV epidemic in this country was first recognized among gay men: privileged, white, devastated. Acquainted with being empowered and feeling powerless, they, were focused and determined in their efforts to survive. The AIDS movement was unquestionably associated

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Introduction

with homosexuality. This set up a situation that automatically created barriers for many African Americans. The choice for many, it seems, was to dissociate — the human tendency when the psychic pain is unbearable. These are some of the issues that we address in the following pages. Join us as we share with you our journey, both personal and professional. HIV is, in many ways, a very personal disease calling for a personal response first. We invite you to grapple with complex, painful issues about your attitudes and values and to be honest with yourself about them. We invite you to seek ways to work through those personal feelings so that you can see clearly — through a different lens. The fact is that our people are dying and will continue to be infected at alarming rates if we do not, as a community, own this issue and resolve in our minds, hearts, and spirits to do something to stop the silence. We implore you to read and explore with us the issues, concerns, and barriers and join us in creating solutions that work for African-American people. Be informed and prepare yourselves to speak out about HIV and AIDS in any work setting and any life situation that involves African-American people. None of us is immune from this disease. We wish you a safe journey.



1 HIV/AIDS and African Americans: Assumptions, Myths, and Realities Larry M. Gant, Willis Green, Jr., Patricia A. Stewart, Darrell P. Wheeler, and Ednita M. Wright

ASSUMPTIONS We assume African Americans are a homogenous group based on anthropological similarities and cultural biases. The homogeneity we ascribe to African Americans makes it convenient to categorize and isolate a segment of the U.S. population. This segmenting is fueled by stereotypes that have long-standing histories in U.S. history and folklore. These include images of hyper-virility and sexual promiscuity, slow-wittedness, laziness, and social disorganization as a collective. Although stereotypes are said to contain some elements of truth, the wholesale application of these perspectives to an entire population is grossly inappropriate. What is often called African American often is not. All persons of brown complexion with particular features are not African Americans. Beyond saying this, many discrete factors have to be considered when planning any phase of HIV/AIDS service to African-American communities. The past century has seen many changes in the social, political, and economic circumstances of blacks and African Americans. Overall, these changes have moved blacks closer to the U.S. ideological middle class. Unfortunately, this movement has not been paralleled by the presence of adequate resources or social supports suggested by this accommodation process. Poverty, excessive mortality and morbidity, poorer educational outcomes, and many other social indicators suggest that, in the waning

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years of the twentieth century, black Americans have not gained equal footing with whites and in some instances are losing ground gained earlier this century. How does this backdrop contribute to what we see in HIV/AIDS? In health education, prevention and intervention services prevailing models have been based on a health belief structure that suggests that individual or community awareness of an event is a requisite for change. Many assumptions undergird this belief system. The person or group has a positive self regard or this can be tapped into, the person has or has knowledge of resources he or she can mobilize, and mobilization of resources toward the noted end is the option of reasoned choice. Where these assumptions do not hold true our models of intervention and prevention are less productive. This may be the case with African-American and black communities facing HIV/AIDS. Economic considerations provide a more concrete example. Most federal and state labor statistics suggest a disparity in economic resources and earning power between blacks and whites and between men and women. Fewer resources equate to fewer options for ways of spending funds. In a capitalist-welfare society, economic self reliance is valued over all else. Not having these resources creates intra- and extrapsychic stressors. When confronted with choices for sinking limited resources into preventive health for a future that is seen as conscripted by social barriers, it is not difficult to imagine the refunneling of those resources to life's more immediate pleasures. Forces and factors, both external and internal to the individual, have an impact upon individual actions related to HIV/AIDS prevention and intervention. Understanding that these forces work in tandem is important in this work. This is probably more true with historically marginalized groups that have limited social power and limited and controlled access to a society's privileges. MYTHS AND REALITIES The efforts to engender and facilitate a coherent strategic response to HIV/AIDS have been hobbled by lack of information, misinformation, and disinformation. This chapter lists some of the most commonly held myths regarding AIDS and African Americans and provides accurate and reality-based responses. Some of (he information revealed paints a grim picture about the current and future incidence and prevalence of HIV and AIDS in African-American communities. Encouragingly, other information suggests that a majority of African Americans are concerned, ready, and willing to begin and sustain a community response to HIV/AIDS.

Assumptions, Myths, and Realities

3

Epidemiological Information about AIDS and African Americans Myth: HIV infection rates and reported AIDS cases are decreasing in the United States. Reality: The February 1998 projections provided by the Centers for Disease Control and Prevention reflect a dramatic decrease in the percentage of AIDS cases among white Americans. The same data indicate modest increases in AIDS cases among Latinos and a dramatic increase among African Americans. Conservative projections suggest that over 50 percent of newly diagnosed AIDS cases will be African Americans by the year 2001, three years away. Myth: AIDS is a "equal opportunity disease"; AIDS is a "gay white male disease." Reality: The risk of AIDS among African-American men (compared to white men) was 5 to 1 in 1995 and will increase to 14 to 1 by 2005. In other words, African-American men are now 5 times as likely to have a risk of AIDS than white men and will be 14 times as likely to have a risk of AIDS by 2005. For African-American women, the picture is even more alarming. The risk of AIDS among African-American women (compared to white women) was 15 to 1 in 1995, and will increase to 20 to 1 by 2005. In other words, African-American women are now 15 times as likely to have a risk of AIDS than white women, and will be 20 times as likely to have a risk of AIDS by 2005. Finally, Centers for Disease Control and Prevention projects, conservatively, that there will be 75,000 to 125,000 motherless children in the United States because of AIDS (AIDS orphans) by the year 2000. Ninety percent of these children will be African Americans. Myth: There is no link between AIDS cases among African-American women and injection drug use among African-American men; they are two different problems for two different populations. Reality: In fact, HIV/AIDS rates among African-American women and AfricanAmerican injection drug users (IDUs) are closely related. Substance abuse is a major contributing factor to the transmission of HIV, responsible for 40 percent of all reported cases of AIDS through September 1998. The incidence of HIV infection among African-American men who inject drugs is as high as 65 percent. The primary transmission of HIV by substance abuse is through the exchange of body fluids (typically blood) that remain in the syringe or

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needle and are transferred from one person to another. Secondary transmission of HIV occurs as a result of the disinhibiting effects of mindaltering drugs, such as alcohol, marijuana, and cocaine, which promote unprotected sex and unsafe drug-injection practices. In addition, addicted men may be the initiators or typically the recipients of a sex-for-drugs trade, particularly when crack cocaine is inexpensive. Finally, a growing body of literature points to the immunosuppressive effects of the consistent consumption of alcohol, tobacco, and other drugs, which increases the susceptibility to HIV infection. Epidemiological investigations have revealed a strong pattern between infection rates in IDUs and infection among women, many cases of which occur because of women having unprotected sex with IDUs. Generally speaking, if no epidemic of HIV/AIDS exists among IDUs, the likelihood of HIV/AIDS infection among women is extremely low. In Seattle, for example, there have been few cases of AIDS among women and IDUs, despite the epidemic among gay and bisexual men. An analysis of seroprevalence patterns in San Francisco, before and after community health outreach workers implemented selective needle exchange and bleach-distribution programs to the city's injection drug use community (estimated at 10,000), illustrates the encouraging possibilities of such an approach. The San Francisco programs have stabilized the rate of infection among IDUs at 10 percent; stabilized the rate of HIV infection among the latest cohort of IDUs at about 1 percent; and led, for the first time since surveillance began, to a decreasing rate of HIV infection among women in San Francisco in 1994. The budget for this intervention was $800,000. Myth: AIDS affects everyone, regardless of social status, income, or education. Reality: Although true, it is difficult to ignore the realities reported in Women, Poverty and AIDS (Farmer, Connors, & Simmons, 1997): Half of all women with AIDS have not graduated from high school; Seventy-seven percent of all women with AIDS have an income of less than $10,000; In Los Angeles County (1997) nearly 78 percent of African Americans with AIDS were from low income areas (compared with 47 percent of whites with AIDS); In a recent survey of HIV-infected women at Boston City Hospital, nearly 80 percent suffered domestic violence, rape, or both.


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Observations and Implications: Epidemiological Issues AIDS has established itself as the leading cause of mortality among African Americans and by a huge margin (2 to 1 for men, and 3.5 to 1 for women) over the second leading cause of mortality, homicide. In other words, twice as many African-American men die from AIDS than from homicide, and three-and-one-half times as many African-American women die from AIDS than from homicide. For the foreseeable future, African Americans will comprise over 50 percent of all new cases of AIDS although they will continue to constitute approximately 12 percent of the U.S. population. Nearly 90 percent of all new cases of AIDS among children and youth will be African American. AIDS is well on the way to being a permanent fixture in African-American communities unless radical change occurs, and soon. For many African Americans residing in urban communities the lack of access to adequate medical care is itself a risk factor for HIV infection. African Americans who are poor, drug-using, and largely female experience high degrees of prejudice and social rejection as politically unpopular segments of the U.S. population. Further, many African Americans do not have either the social or political structures to support mobilization of prevention efforts or motivation for behavior change. Services for African Americans Living with AIDS Myth: There are plenty of services for African Americans with AIDS. Reality: In human services, the most common response to managing complex systems is the use of case management, which coordinates community mental health services and services to elderly people and people with developmental disabilities. As the HIV/AIDS epidemic has progressed, there has been a growing consensus among infected people and frontline service staff that case management works better for some populations than for others, largely because case management services for people with AIDS were created to respond to the initial concerns of the first infected group, gay white men. The basic needs of food, shelter, clothing, and finances of middle-class gay white men with AIDS already had been met substantially. Care services, therefore, generally were oriented toward facilitating the use of resources these individuals already possessed, maintaining those resources when they could no longer do so, appropriately disposing of these

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resources upon their death, and helping them maintain a high quality social, emotional, and psychological life. These case management systems operated largely with and within a context of the gay community, enclaves that were generally economically sustainable, that assumed responsibility for generating relevant, comprehensive prevention and treatment responses to AIDS, and that were capable of providing a substantial nurturing response to both infected and affected members of the gay community. The core services typically included HIV support and education; crisis intervention; counseling; case management; support and bereavement groups; telephone information and support groups; financial and legal assistance; and linkages to other services, resources, and social security entitlements. The care systems established for persons with AIDS whose basic needs largely were met and who had access to some resources were quickly overwhelmed as AIDS spread to marginalized groups with access to far fewer resources or, in many cases, no resources. Many poor, ethnicminority, drug-using people with AIDS did not have resources to meet their basic needs for food, shelter, clothing, and economic sufficiency. The managers of case management systems today are extensively taxed in coordinating the care of these people with local and state public programs, federal programs that provide disability benefits, and private charity programs. Interactions between case management systems and programs in the local community have been severely limited where AIDS has overwhelmed the already underfunded and overburdened housing, social services, and health care systems. Community-based organizations have less access to private resources and are not able to compete equitably with their more established counterparts in the white gay community for scarce private funds or public dollars, such as funds from the Ryan White CARE Act and Housing Opportunities for People With AIDS. These organizations — virtually the only ones available for the largely disenfranchised groups of poor men and women, children, and communities of color — serve populations with the greatest need for assistance. Service systems are fragmented and conditionally available, depending on the resources of the community and local and state auspices. Even the best of these systems offer only a limited and inadequate response to the need. Furthermore, it is clear that support systems that were designed to meet the needs of gay white men are not appropriate for African-American men, women, and children. To paraphrase Jonathan Mann, the implementation of and access to AIDS-related care and support services depends on who you are in this society.


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Myth: Nationwide, African-American churches have provided a clear, compassionate response to people living with AIDS. Reality: The issue of religious involvement takes on a somewhat different perspective with regard to the African-American communities. The impact of religious and faith communities on the African-American community has been pervasive, comprehensive, and much investigated. Because AfricanAmerican churches have provided the basis for community, social, and economic development in many African-American communities, they were considered a logical source of help, solace, and assistance for African Americans with AIDS. Yet, like nearly all other religious communities, African-American congregations were silent during the early period of the epidemic. Some observers pointed to doctrinal fundamentalism and social conservatism as the reason for the reluctance of African-American churches to respond. Others suggested that church leaders gave greater priority to urgent structural problems, such as unemployment and crime. Still others believed that the church leaders were loathe to take ownership of a highly stigmatizing disease. Yet African-American churches have demonstrated a history of pragmatic response to community problems, despite doctrinal pronouncements. The personal accounts and experiences of HIV/AIDS activists in African-American communities suggest that the response of the AfricanAmerican church community to AIDS has been both diverse and complex. Although many African-American churches remain officially silent and resistant, a smaller and growing number have provided exemplary responses to HIV/AIDS. Most church-sponsored activities have been based on the experiences of local communities with HIV/AIDS. Myth: One reason for the lackluster response of the African-American leadership to HIV/AIDS continues to be the association between HIV and gay men. After all, African-American communities are among the most homophobic communities in the United States. Reality: Assertions of homophobia in African-American communities, as well as within the diverse cultures of African-American communities, are legion and certainly not without merit. Homophobia continues to be a factor preventing a greater religious response to HIV/AIDS among African-American populations. However, no evidence exists that homophobia is greater in religious congregations serving African Americans than it is in other communities, nor is there evidence that African-American cultures are any more or less homophobic than other communities of color or the dominant European-influenced U.S. culture.

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It does seem that the expression of homophobia in African-American communities is different from the expression elsewhere. Dalton (1989) observed that among communities of color (with African Americans the illustrative case) the response to homosexuality is characterized by "boisterous homophobic talk, tacit acceptance in practice, and a broad-based conspiracy of silence." It is likely that this observation holds for sectarian and nonsectarian aspects of African-American culture and life. The manifestations of homophobia must be recognized as a complex issue requiring a comparably complex assessment and strategy for effective action. General Attitudes toward HIV/AIDS in African-American Communities Myth: African-American community members are not concerned about HIV/AIDS. Reality: In fact, a majority of African Americans are extremely concerned about the impact of AIDS on the nation, their communities, and their families. A 1996 survey of AIDS and African Americans was conducted by the Kaiser Family Foundation. Among other surprising information was the following: Unprompted, most African Americans (56 percent) name AIDS as the most urgent health problem facing the nation today (compared to 44 percent of all Americans). Most African Americans (51 percent) are concerned that the country is losing ground in the fight (compared to 48 percent of all Americans). Six out of ten (61 percent) often say AIDS is a "very serious" problem for people they know (43 percent of all Americans). A majority of African Americans (55 percent) are "very concerned" themselves about getting AIDS (22 percent of all Americans). An even greater proportion of African-American parents (70 percent) are "very concerned" about their children's risk of AIDS (53 percent of all Americans). Most African Americans (83 percent) believe someone is most likely to be infected with AIDS at age 25 or younger, including 43 percent who say it is in the teen years. Perception among African Americans is that the rate of new AIDS infections within the African-American population is going up (72 percent as compared with 57 percent of all Americans who know this to be true). Most African Americans (56 percent) know someone who has died from AIDS or tested HIV positive (39 percent of all Americans). A majority of African Americans (54 percent) report having been tested for HIV (37 percent of all Americans say they have been tested), including 28 percent who say they have been tested within the last 12 months.


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Myth: African Americans do not approve of AIDS education, condom distribution, or needle-exchange programs. Reality: In fact, African Americans are supportive of a range of different, often controversial, strategies to fight the spread of AIDS: Seventy-six percent say children should begin receiving information about AIDS by 12 years of age (69 percent of all Americans). Sixty-nine percent favor needle-exchange program (66 percent of all Americans). Sixty-one percent favor making condoms available in high schools (46 percent of all Americans; the remaining 49 percent favor just making information available). Myth: African Americans are poorly informed about ways to prevent HIV and treat AIDS. Reality: In fact, African Americans are more informed than average Americans about some of the advances in preventing the spread of AIDS but less aware of some important treatment options. The vast majority know HIV can be spread by sexual intercourse (97 percent) and that a mother can pass the virus to her baby (92 percent). Only 40 percent know drugs are available that can reduce risk of perinatal transmission. Fewer than average (65 percent) know drugs that can lengthen life are available to treat people with AIDS (75 percent of all Americans). Myth: Most African Americans attribute the AIDS epidemic among African Americans as a genocidal conspiracy. Reality: Although many African Americans feel there is some truth to conspiracy theories regarding HIV/AIDS, most do not. Forty-eight percent of African Americans (as compared to 13 percent of white Americans) say there is some truth to reports that AIDS was produced in a germ-warfare laboratory. Forty-one percent believe AIDS is a form of systematic destruction of minorities (as compared with only 13 percent of whites). Forty-three percent of African Americans do not believe the government is telling the whole truth about AIDS (33 percent of whites). Observations and Implications: General African-American Community Attitudes toward HIV/AIDS The African-American community concerns about and response to HIV/AIDS far outpace those of nationally elected, appointed, and espoused African-American leadership. Significant numbers of African

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Americans are knowledgeable about HIV/AIDS, know someone who has AIDS or has died from AIDS-related illnesses, perceive their own vulnerability to HIV, believe AIDS is a very serious problem, report being tested, are aware of the increasing impact of AIDS in the African-American community, and endorse a continuum of conservative and controversial strategies to prevent HIV infection. In many ways, many African-American communities appear ready, willing, and able to sustain community responses to HIV/AIDS. This is extremely exciting and wonderful news. The question is, how long will the community wait for national leadership to endorse or spearhead action? REFERENCES Amo, P., & Freiden, K. (1992). Against the odds: The story of AIDS drug development, politics and profits. New York: HarperCollins. Arras, J. (1988). The fragile web of responsibility: AIDS and the duty to treat. Hastings Center Report, ^(supplement), 10-20. Braunstein, M. (1993). Sampling a hidden population: Noninstitutionalized drug users. AIDS Education and Prevention, 5(2), 131-139. Centers for Disease Control and Prevention. (1993). HIV/AIDS surveillance report. Atlanta, GA: Centers for Disease Control and Prevention. City of Detroit Health Department. (1993). Detroit eligible metropolitan area community needs assessment. Detroit, MI: City of Detroit Health Department. Cose, E. (1993, April 23). National affairs: Larger than life. Newsweek, pp. 30-31. Crimp, D. (Ed.). (1988). AIDS: Cultural analysis, cultural activism. Cambridge, MA: MIT Press. Dalton, H. L. (1989). AIDS in blackface. Daedalus, 118(3), 205-227. Devore, W., & Schlesinger, E. (1987). Ethnic sensitive social work practice, 2d ed. Columbus, OH: Charles E. Merrill. Fan, H., Conner, R., & Villarreal, L. (1994). The biology ofAIDS, 3rd ed. Boston, MA: Jones & Bartlett. Farmer, P., Connors, M., & Simmons, J. (Eds.). (1997). Women, poverty, and AIDS: Sex, drugs, and structural violence. Monroe, ME: Common Courage Press. Fumento, M. (1990). The myth of heterosexual AIDS. New York: Basic Books. Gant, L., & Ostrow, D. (1995). Perceptions of social support and psychological adaptation to sexually acquired HIV among white and African American men. Social Work, 40, 215-224. Gould, P. (1993). The slow plague: A geography of the AIDS pandemic. Cambridge, MA: Blackwell.


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Greeley, A. (1991). Religion and attitudes toward AIDS policy. Chicago, IL: National Opinion Research Center. Gutierrez, L., Ortega, R., & Suarez, Z. (1990). Self-help and the Latino community. In T. Powell (Ed.), Working with self-help (pp. 212-236). Silver Spring, MD: NASW Press. Higgins, D., Galavotti, C, O'Reilly, K., Schnell, D., Rugg, D., & Johnson, R. (1990, June). The effect of HIV antibody counseling and testing on risk behaviors: Are the studies consistent? Paper presented at the Sixth International Conference on AIDS, San Francisco. Hombs, M. (1992). The AIDS crisis in America: A reference handbook. Santa Barbara, CA: ABC-CLIO. Horrigan, A. (1988). AIDS and the Catholic church. In R. Berk (Ed.), The social impact of AIDS in the United States. Cambridge, MA: Abt Books. Jackson State University National Alumni AIDS Prevention Project. (1991). AIDS and the African-American church: An AIDS education and training guide for African-American religious leaders. Jackson, MS: Jackson State University National Alumni AIDS Prevention Project. Kaiser Family Foundation. (1998). National survey of African Americans on HIV/AIDS. Menlo Park, CA: Kaiser Family Foundation. Kirp, D., & Bayer, R. (Eds.). (1992). AIDS in the industrialized democracies: Passions, politics, and policies. New Brunswick, NJ: Rutgers University Press. Kwitny, J. (1992). Acceptable risks. New York: Poseidon Press. Lambert, B. (1989, June 10). Black clergy to address AIDS threat to race. New York Times, pp. B29, B32. Lloyd, G. (1990). AIDS and HIV: The syndrome and the virus. In L. Ginsberg et al. (Eds.), Encyclopedia of social work, 18th ed., 1990 suppl. (pp. 12-50). Silver Spring, MD: NASW Press. Loiacano, D. (1989). Gay identity issues among black Americans: Racism, homophobia and the need for validation. Journal of Counseling and Development, 68, 21-25. Longshore, D. (1992). AIDS education for drug users: Existing research and new direction. Journal of Drug Issues, 22(1), 1-16. Lynch, V., Lloyd, G., & Fimbres, M. (1993). The changing face of AIDS: Implications for social work practice. Westport, CT: Auburn House. Mann, J. (1994, March 31). AIDS, health, and human rights: The future of public health. Presentation at the University of Michigan School of Public Health, Ann Arbor. Miller, H., Turner, C, & Moses, L. (1990). AIDS: The second decade. Washington, DC: National Academy Press. Mitchell, A. (1990, November). AIDS: We are not immune. Emerge, I, 30-44. National Association of People with AIDS. (1992). HIV in America: A profile of the challenges facing Americans living with HIV. Washington, DC: National Association of People with AIDS.

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SOCIAL WORKERS SPEAK OUT ON THE HIV /AIDS CRISIS

National Research Council. (1993). The social impact of AIDS in the United States. Washington, DC: National Academy Press. Neighbors, H., Elliott, K., & Gant, L. (1990). Self-help and black Americans: A strategy for empowerment. In T. Powell (Ed.), Working with self-help (pp. 189-217). Silver Spring, MD: NASW Press. Newmeyer, J. (1994, May 17). HIV and drug users: Prevention on the cheap in San Francisco. Presentation at Wayne State University, Detroit. Patton, C. (1990). Inventing AIDS. New York: Routledge. Patton, C. (1985). Sex and germs: The politics of AIDS. Boston, MA: South End Press. Perrow, C , & Guillen, M. (1990). The AIDS disaster: The failure of organizations in New York and the nation. New Haven, CT: Yale University Press. Quackenbush, M., Benson, J., & Rinaldi, J. (1992). Risk and recovery: AIDS, HIV and alcohol. San Francisco, CA: AIDS Health Project. Randall-David, E. (1989). Strategies for working with culturally diverse communities and clients. Washington, DC: U.S. Department of Health and Human Services. Reamer, F. (Ed.). (1991). AIDS and ethics. New York: Columbia University Press. Ryan White Comprehensive AIDS Resources Emergency Act of 1990. RL. 101381, 104Stat. 576. Sepulveda, I., Fineberg, H., & Mann, J. (Eds.). (1992). AIDS prevention through education: A world view. New York: Oxford University Press. Specht, H., & Courtney, M. (1994). Unfaithful angels: How social work has abandoned its mission. New York: Free Press. Squire, C. (Ed.). (1993). Women and AIDS: Psychological perspectives. Newbury Park, CA: Sage. Taylor, R., & Chatters, L. (1989). Religious life. In J. Jackson (Ed.), Life in black America (pp. 105-123). Newbury Park, CA: Sage. U.S. Congress, Office of Technology Assessment. (1992). Difficult-to-reuse needles for the prevention of HIV infection among injecting drug users. Background paper (OTA-BP-H-103). Washington, DC: U.S. Government Printing Office.

2 Social Work Practice with African Americans with HIV/AIDS: Challenges to Mind, Body, and Spirit Patricia A. Stewart

Working with people with HIV/AIDS can be one of the most challenging experiences of one's career. The continually rising tide of the disease and its impact on the lives of African-American men, women, and children is painful to behold and to experience. The disease strikes most adults in the prime of life. It began in this country among primarily white, gay men who were accustomed to power and empowerment. Scores of men were stricken and died, leaving a legacy of fear and grief as entire communities were being wiped out. I have frequently heard people say that all, or practically all, of their friends have died. Mainstream Americans were slow to respond, convinced that this was the gay man's punishment for his sins, and distanced themselves from the disease because it only affected "them." Substantiating that myth was the very fact that the disease was initially identified exclusively with gay men by its very name, Gay Related Immune Deficiency. Many black Americans, already weighed down by myriad social ills, were in no way ready to take ownership of yet another burden. Homosexuality among black men was something that was barely tolerated and not acknowledged, even when obvious. There was no "elephant in the living room," so people walked around it. The large numbers of black gay men who died from complications of AIDS were designated as having cancer, pneumonia, or anything else that was "safe" and could maintain the denial system about the amount of homosexuality in our communities. Many

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black churches, historically beacons of light and sources of support, were silent at best, and some blatantly refused to acknowledge the problem. Scores of individuals and families with otherwise solid, comforting relationships with their ministers were left to their own devices in their grief when unable to get past the shame, fear, and anger about homosexuality. Pastoral counseling around the person's death and the eulogies delivered at funerals were often hollow and generic. Healing cannot begin until the truth is told. When, in the second wave of the disease, large numbers of injection drug users were becoming infected, another disgrace, nationally and in the African-American community, reared its ugly head. First the faggots and now the junkies — the community was not going to embrace either group, much less have compassion. Anyone who has loved an addict and attempted to have a relationship with him or her knows how exhausting and painful such a relationship can be. Again, the black community suffered in silence. When the women, presumed to be infected by their partners who were injection drug users, or men having sex with men became infected, they ushered in the third wave of this disease. Another silent wail arose from the community: now there had to be more acknowledgment as children became infected and they and their affected siblings were being preceded in death by one or more parents. Caretakers, often grandmothers, were devastated as they alternately rose to the challenge of rigorous care, on the one hand, or sat helpless by, on the other hand. The demand of the surviving children's needs left no time for grieving the loss of the parent, a loss that was often experienced long before the actual illness in cases in which parents had denounced differences in lifestyle and refused contact. Children who are critically ill with AIDS in the first year of life can have barely any quality of life — sometimes experiencing chronic pain, repeated hospitalizations, and invasive procedures. Although we can be relieved and gratified when infected children do well, the reality is that one day, any day, the child can fall prey to this vicious disease. Children who are affected by the disease try to assimilate in their fragile minds the painful losses of parents or siblings. They know in their guts, in their spirit, that there is something that is not quite right about the amount of sickness within their environment. The parents of these children, too, face overwhelming odds. Their own loss of control and fear of dying, as painful as all of that is, is often expressed as a concern secondary to the guilt about transmitting the virus to their children, the illnesses and often tortuous death of their infected child, or the possibility of leaving their children to be reared by others. I have witnessed the depths of that

Challenges to Mind, Body, and Spirit

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parental pain; it is intense and seemingly incomprehensible. The pain and the losses are compounded for African Americans and other children of color in the United States, many of whom, because of racism, live in poverty. That people can get up in the morning with all of these issues weighing on them is, to me, truly amazing. The courage to allow someone to reach out to them and to begin the process of healing from the effects of poverty, addictions, pain, and loss is often witnessed as nothing short of a miracle — a spiritual phenomenon. This chapter will address that spirituality — that healing journey — from multiple vantage points. Developing a working definition of spirituality, I will, with case illustrations from my practice, bear witness to the spiritual aspects of social work practice with people living with HIV and AIDS. The spirituality inherent in recovering from addictions and other life stressors and traumas will also be explored. Healing from the emotional trauma of HIV disease is possible when old wounds (that predate the diagnosis and that can resurface during treatment) are healed. The courage and the triumphs of people who live with this disease will be acknowledged and applauded. Connecting with that spirit (that is, being present with that person and family) through it all is sometimes all we can do, yet it is from that place that we can best help them to meet their physical and social, psychological, and emotional needs, which also will be discussed in the context of the social worker's need for cultural knowledge and genuine respect. Furthermore, connecting with the spirits of those living with HIV can help social work practitioners to connect with their own spirits and, with adequate support, this can foster personal and professional growth and richness. The faces-in-the-mirror phenomenon of African-American social workers treating and healing our own people will be discussed and put in the context of the pain of the African-American community as it relates to this disease or as segments of the community do not relate to those with this disease. A discourse on the interface between religion and spirituality will lead to my vision for the future in the healing of the African-American nation state. WHAT IS SPIRITUALITY? This chapter is not meant to be scholarly in the traditional sense. The goal of this work is to share my experiences as an African-American person and as a social worker. Spirituality, as I see it, is a very personal issue. I talk about it in this chapter from the standpoint of what it means to me

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in my work and in my personal experiences. Although I will talk about some constructs that are in social work publications or that are otherwise considered common knowledge, I will, as do we all, filter those truths through my own experience. Stating that something is or appears so for me makes clear that I am speaking about my experience or perception and leaves room for the reader to agree or disagree and apply that to your own work with people with HIV. In this way we each come from the place of our own truth, acknowledging it as simply that, and give space to each other to do the same without judgment or criticism. M. Scott Peck talks of "the willingness to extend oneself for the sake of one's own and another's spiritual growth." It is his definition for love (Peck, 1978). I also define spirituality as: Oneness with self and with a power greater than myself, known by such names as God, the Creator, Allah, the Universe, and so forth. I believe that our resilience as humans (and for African Americans, as a people) can be attributed to relationships with self and others and faith in someone or something greater than ourselves. It can impart the ability to get through hard times and helps me to have some place to put my questions and anger about things that I do not understand or whose meaning I cannot interpret on my own. The seeking of God's will, asking for direction, guidance, and patience are all part of my spiritual program. Having this personal frame of reference has helped me in all of my work experiences, which have been richly deepened by my work with people living with the virus. Two things are important to remember. First, no one is perfect. I seek to live by certain ideals every day, but these are subject to much interference when I place my focus on people and their behavior, rather than on my source. Second, although this spiritual diet works for me, the sheer beauty of it is that I do not impose it on or require it of others. When, in my humanness, I am tempted to do that — to impose it on or require it of another — I violate my own definition of spirituality. Spirituality is the ability to find peace and happiness in an imperfect world and to see that one's own personality is imperfect but acceptable (Siegel, 1986). It is the basic human drive for meaning, purpose, and relatedness. It is the very essence of a person, the life force. SPIRITUALITY IN A RACIST SOCIETY Problems develop when one's relationship with one's self, to others, or to one's source is blocked. A fundamental challenge for oppressed people is to maintain the spiritual connection in an often hostile environment. Social workers work with people from all backgrounds, many of whom


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have been traumatized. They have been courageous survivors of some unspeakable traumas for years. Added to these traumas we find in anyone's history is what I call the societal backdrop of racism that has, for generations, ravaged many communities of African Americans The lack of resources, unequal distribution of wealth and opportunity, and the consistent and persistent efforts to convince African people that we are subhuman only begin to tell the story. White Americans have tried their best to kill our spirits. As a result, many of us are lost to crime, drugs, poverty, homelessness, inadequate or no health care, untreated mental illness, hopelessness, despair — the list goes on, seemingly ad infinitum. Not all who are lost, however, will or must remain that way. Although the conditions just listed are decidedly social in nature, I submit that they are also conditions of the soul (that is, of the spirit) and, therefore, healing can take place independent of any change in social circumstances and can, in fact, lead to the empowerment that may be needed to change. What racism and white supremacy have taken from many of our people is the positive sense of self. We are often confused about the meaning of our lives and our purpose on this earth. These feelings correlate highly with those who are oppressed by society and the same dynamics are evident in work with those who are abused on a personal level. Questioning the reasons for one's existence with respect to the pain and misery in one's life is a spiritual issue. I have found that certain basic needs are unmet; people need the space within which to be heard. The need for unconditional love and acceptance and the need for belonging are recurring issues in my work. Before any information is shared in intake, and any assessment is attempted, it is my belief that the social worker, the human being, must connect with the humanity of the person before her. With a clear lens, an open mind, and a nonjudgmental spirit, it is possible to see (the nonverbal effect) and feel the unstated condition of the client and to attend to that. It is essential to be mindful of the woundedness of the person in need. I have found in my work and in my life that the wounding — above, beyond, beneath all of the behavior and other forms of human presentation — is the root cause of the presenting problem. THE JUXTAPOSITION OF SPIRITUAL WOUNDING AND ALL FORMS OF ABUSE The wounding can take many forms. Simply stated, some form of abuse — physical, emotional, sexual, intellectual, spiritual — is in the life

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experience of people in despair. When one has been beaten, or sexually violated, or told that one is stupid, or that one will never amount to anything, or that one is not wanted, the messages stay intact. Abused children grow with scars that are often invisible or at least indiscernible to the untrained eye and to the closed mind. It is troublesome to hear fellow and sister social workers dismissing the effect of abuse on the well-being of an individual. Abuse in any form, intensity, or duration has long-term consequences for the way in which one lives one's life. If the social worker does not know about the abuse or if the information about abuse and other wounding is not sought in the assessment, the social worker misses something very valuable about the client. What is worse is if it is known and seen by the practitioner as unimportant or an excuse for behavior. The social worker not only misses an important clue but also may lose the trust of the client and, thus, the opportunity for meaningful connection and healing. Abuse in any form is a spiritual insult. It may not be acknowledged as an issue or, as we know, it may not even be remembered. When such is the case, it is, in my opinion, even more of a factor, predictor, and determinant of maladaptive behavior and diminished quality of life. Abuse correlates highly with HIV disease, as found in the work of Allers and Bernack (1991) who found a strong correlation between childhood sexual abuse and HIV. This was evident in the HIV program in which I worked. It was an issue that was consistently reported, often told by the client like a story or a fact of life, sometimes with little or no effect. There often would be adaptation, like the parable about the thorn in the lion's paw. Over time, there is so little consciousness of the thorn that what is left is merely a lifestyle of often unrecognizable adaptation to the pain. The point in one's life at which social work intervention is begun, whether sought or included in a bevy of services, provides an opportunity for the social worker as a spiritual healer. This calls upon the social worker to follow the directive "know thyself," which, I believe, enables us to be ourselves and to see the person before us. We are then able to include the spiritual — the lens that detects the wounding — in the assessment and intervention. WOUNDING AND WOUNDEDNESS IN THE BLACK COMMUNITY These are my beliefs about many people with whom I have worked in the general population. I want, however, to talk about my experiences in and knowledge of issues of wounding and woundedness in the black


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community, in general, and then, more specifically, among African Americans living in poverty with HIV/AIDS. There are many indications of woundedness in the African-American community. We have a unique history in the United States. We did not immigrate. We did not choose to be here. The finest of our African ancestors, kings and queens and noble people, were kidnapped, dehumanized, and enslaved. Children were ripped from their mothers' breasts, separated from the guidance and wisdom of their fathers. Those who could speak the same language, and who otherwise had a common bond, were separated and dropped off in different countries and on different plantations, lest they plot a revolt. It was illegal for men and women to marry. Our women were used for the baneful sexual pleasure and power disorders of the white male slave masters, polluting our race with their blood while denying us the opportunity for basic humanity. The result was that there were various shades and colors of children, complete with varying hair textures and senses of identity, which set in motion a divisiveness and mistrust among those of our race — conditions that exist to this day. Our men were humiliated, dehumanized, castrated, and hanged. Branded and sold like cattle, deemed valuable according to their physical prowess and strength, they were feared for the very same reasons. To look at a white woman lustfully was to die. To look anyone white in the eye was forbidden. Without power, they could be removed from the plantation, necessitating separation from family and loved ones, including their women and their children conceived in love. If they had any thoughts about owning their own power by resisting the harsh treatment or running away, they were publicly beaten with whips. They were shamelessly beaten by the white slave masters and their designees. They were beaten and physically tortured into submission. It is important that we not forget our history of the mindset that could design and facilitate slavery. The myth of white supremacy and its correlate belief that African people are subhuman has been handed down through the generations, evident in personal attitudes and actions and public policy and economics to this day. THE WOUNDEDNESS IN CHILD REARING IN AFRICAN-AMERICAN COMMUNITIES A major component of the tyranny of slavery is what it taught us about how to value and treat ourselves and each other. It is not fashionable to talk about this. There are many of all races who can see no relationship

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between slavery and what is happening in our villages today. I see it, though, and will talk about one aspect of it as I believe it relates to the issue of HIV and African Americans. This brings me to the subject of child rearing among our people. It is, in my opinion, a major illustration of the woundedness and one way in which we as a people participate in the perpetuation of our social condition. As a clinician, I am trained to look at the etiology of human behavior. Much has been asserted and accepted about the first three years of life and its impact on later functioning. Another assertion is that there is a parenting style among African Americans that is decidedly different from the way many white people, particularly the privileged and empowered, rear their children. Recently I encountered a white man whose little boy, who appeared to be about two years old, was sitting on the sidewalk, refusing to get up. He was howling and thrashing his hands, obviously angry about something. His father stood near him looking down, alternately talking with him and attempting to soothe him. What struck me most was that he did not seem to attempt to force him to change, to get up, or to stop the behavior. He did not scold or beat him. He allowed him his moment, which seemed like an hour, even to me as the onlooker. My friend and I were mesmerized as we watched for quite some time. As we left we remarked to each other, "Can you imagine if we had done that when we were children, we would have been killed [that is, beaten by our parents] — no, we wouldn't even think about allowing ourselves that type of expression." and, "That little boy will likely grow up to rule the world [that is, to get what he wants — to know how to get his needs met.]" I told the story about the little white boy on the sidewalk to women in the parenting group that I facilitate in a homeless shelter. They are all African American. As I told them, the nonverbal responses were immediately angry, incredulous, and critical. They then talked about how they would beat their kids' behinds for "embarrassing me like that in public." They went on to say that "white kids talk to their parents any ole kinda way . . . they have no respect." It took some work to help them even to begin to embrace the concept of treating children with respect. We repeatedly discuss the concept that children do not deserve to be beaten. What I have found with this group mirrors my work with African Americans throughout my career and is evident in my personal and social life as well. Over the years, as I have raised the question of child beating with African Americans, there have been very similar responses. It is seen as the way to discipline children, the justification for it being a variation of these themes: We were beaten as children; that is the way to discipline; I turned out all right; being beaten made me respect my parents more.


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The social correlate to the myth of white supremacy is the myth of black inferiority and the expectation of suffering. These constructs have been passed down through the generations for centuries. It continues to destroy the fabric of our families and our communities and perpetuates the forfeiture of power to white people to the detriment of our own growth. There is simultaneous awe, reverence, and criticism of their ability to raise powerful people while we continue to emotionally scar our children, just as our ancestors bore the whip. True to the clinical dynamics of abuse, we have identified with the aggressor and picked up the whip to use on ourselves and each other, including our children. To my continual dismay and amazement, we defend these actions as the right way to rear children, while the behavior of so many of our children screams at us that something is very, very wrong. We look at the behavior and blame them, oblivious to our part in what is going wrong and often without the correct information about how the treatment of children is essential in their development. It is my experience that this kind of thinking cuts across all socioeconomic lines within the African-American communities. Black children of means grow with these scars and pass them on to their children. The pain is often evident in their decreased quality of life. Things like conspicuous consumption — when they acquire many or especially high quality material goods while the joy of life passes them by — workaholism, alcoholism, drug addiction, sexual addiction, and failed relationships are all the marks of this pain, often going back to cruelty in the name of good parenting. When this abusive child-rearing scenario is played out among children who live in poverty, the same kinds of effects are seen and felt with devastating consequences. The same decrease in quality of life can be seen. The addictions to drugs and alcohol, sex, and so forth are even more visible because of the voyeuristic nature of the system that is supposedly established to help the poor. The lack of self-esteem that results from physical and emotional abuse and spiritual neglect and undernourishment is significant. When that is accompanied by the societal construct of poverty in the midst of plenty — in a nation of abounding resources to which some citizens do not have access — it compounds the sense of hopelessness and despair and rage. The rage, as I see it, manifests itself in a number of ways in poor, innercity communities: poor self care (as seen in diet and crisis-driven medical and mental health care); black on black crime; high drop out rates from the educational system; acceptance, for some, of drugs as a way of life for both making money and numbing pain. The pain is rooted in the social correlates of institutional racism found in each of the conditions in this

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partial list of rage manifestation. The rage and the racism then feed on each other, caught up in a destructive cycle that challenges the ability to attend to things spiritual for the hater and the hated. CANNOT SEE THE FOREST FOR THE TREES In 1997,1 participated in a research project interviewing HIV-positive African-American women in Philadelphia, Pennsylvania. Most of the women were poor. I was struck by the number of people who, when approached with whether there is or has been stress in their lives because of racial discrimination, immediately answered that there was not. The response was different for women who were involved in activism who had received formal education. How can that be? My personal conclusion is that this is evidence of the far-reaching effects of racism as a form of abuse — the root cause of the problem is obscured. By and large, the problems in one's life were seen in a very personal way — with focus on the negativity one toward another, blaming themselves and various others in their lives for their conditions without adequate information about how their history or the macro issues of policy and economics affect their lives today. I recall that one woman, who literally lived from hand to mouth, told me, however, that she was proud that at the end of the week she had "five whole dollars left over." She had stayed within her budget. She was one who did not think she has ever been discriminated against. The sense of the denial of opportunity — of discrimination against the collective, her race — was not a part of her view. It pains me to know that so many of my people are oppressed and do not know it. There has not been comprehensive, effective teaching about history and culture and politics to the masses of black people. Not knowing oneself, individually and collectively, is spiritually wounding. Just as no child should be without adequate food and shelter, no parent should look narrowly at a situation that produces that scenario. In the absence of the truth, oppressed people, in this case mothers and fathers, can blame and shame themselves for not being able to provide. This sort of parental shame leads to addictions and abandonment of oneself and one's children, not only physically but also emotionally. It is the breeding ground for what I call a state of spiritual disconnectedness — that inability to be present for oneself or the beloved. In fact, the very capacity for love can be questioned when one is in state of spiritual emergency. Of course, the ultimate question is whether God exists or loves or cares.


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THE SEARCH FOR MEANING AND SOLACE I would venture to say that people seek solace for the pain of life in their own ways. Life is difficult (Peck, 1978). Problems and pressures can mount and, without help, despair abounds. In my experience, this is true for many. Help is often available, yet we have a culture that is still mental health phobic — many segments resist the very help that could provide clarity, emotional evolution, and maturity. I must say that the practice of mentoring and relying on the knowledge and guidance of the elders in our communities has been a construct that must not be minimized. Yet for many, and as in any culture, the informal support system has its strengths and limitations. Sometimes professional counsel is needed as an adjunct. GENERATIONS OF UNMET NEEDS Because of our mode of entry and history in this country, African Americans have been largely in survival mode that has included a profound distrust of the establishment and a system of coping that often circumvents authority. The basic premise is this: I will not be considered, appreciated, heard, or respected anyway, so why bother? The anger in response to this belief develops into a resistance to authority, which ultimately harms the one without the power in some way. This has been passed down through generations and is evident in communities across the socioeconomic spectrum. I have seen this primarily in my work with people with HIV in poor communities. MENTAL HEALTH CONCERNS Concerns about being stigmatized and considered crazy have a lot to do with the perception of mental health service as a last resort. The problem is further compounded for poor people who may not choose who treats them, and the scope and quality of the treatment is variable. For African Americans, the issues of privacy, "not telling your business," or "airing dirty laundry" adds another dimension. Often their experiences with the mental health system have been less than optimum quality or culturally ignorant or insensitive, and their health needs are not met. I miss no opportunity to espouse the value of good professional help. As African Americans, we are so used to being ignored and cast out that it almost seems as though the pain is a part of life. You will recall the parable of the thorn in the lion's paw. I firmly believe that no one seeks help

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until the pain is unbearable, the ways of coping do not work any more, and the person is exhausted — emotionally, spiritually, and often physically. A good social work assessment for the newly diagnosed includes questions about the client's mental health history and current status. Being culturally competent in this area means recognizing that black people may use different terminology to describe themselves and their issues. I may ask, "Have you ever taken any medicine or been to a doctor or been hospitalized for your nerves?" I also listen keenly as I assess for the functional capacities — the activities of daily living and eating and sleeping habits. I have had some clients deny taking medication and then talk about taking "a little something the doctor gives me to help me sleep at night." Undiagnosed mental illness is a problem. A skillful survivor will find ways to compensate for the problem; a common way to do this is to selfmedicate. For example, alcohol can certainly mask depression, but then in its place can be alcoholism, another big forgotten addiction, about which I will talk more later. Because illicit drugs are pipelined into AfricanAmerican communities and crack is epidemic and so destructive, crack tends to get a lot of attention. It is not organically one of the high risk predictors of HIV, but it is commonly accepted that its effect on the user leads to high risk activity. Anyone who is newly diagnosed with HIV may have a period of adjustment that may appear like a mental health problem. When an African American is diagnosed, the intervention must take into account the issues of self-esteem and coping strategies in the context of being African American. This requires practitioner skill, vigilance, and sensitivity, because clients may not be aware of the impact of racism on their everyday lives, as I mentioned earlier. Grier and Cobbs (1968, 161), in their classic work Black Rage, talk about a kind of cultural paranoia that exists for many people who are conscious of the extent to which they must survive in this society. This hypervigilance and rage and anger need to be carefully and respectfully analyzed to determine whether they are mental health issues or firmly entrenched cultural pain that may decrease over time with the help of a sensitive social worker. It is a challenge for the social worker to do in-depth work in institutions that serve people living with HIV. Yet, having the perspective to work intensively and thoughtfully, respectful of the myriad issues of the African American sitting before us, can help us to join with the client and lay the groundwork for not only retention in medical treatment but also for a referral to a good mental health professional if and when the need arises. In this way, the barriers to consideration of mental health treatment that exist in our communities can be minimized — they have already had an


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experience of trust and safety because of the nature of the treatment received from the social worker. Spiritual healing has already begun when one feels safe in our presence. SOCIAL WORK'S ROLE IN MEETING EMOTIONAL AND SPIRITUAL NEEDS IN HIV CARE The primary mission of the profession of social work is to enhance human well-being and help meet the basic needs of all people, with particular attention to the needs and empowerment of people who are vulnerable, oppressed, and living in poverty. The profession's focus on individual well-being in a social context and on the well-being of society are two of its unique features. Fundamental to social work is attention to the environmental forces that create, contribute to, and address problems in living (National Association of Social Workers, 1996). Social work's mission is rooted in a set of core values that are the foundation of its uniqueness, purpose, and perspective. These values drive the ethical principles that guide the work. They are: Value Service Social justice Dignity and worth Importance of human relationships Integrity Competence

Ethical Principle The social worker's primary goal is to help people in need and to address social problems. Social workers challenge social injustice. Social workers respect the inherent dignity and worth of the person. Social workers recognize the central importance of human relationships. Social workers are trustworthy. Social workers practice within their areas of competence and strive not only to develop and enhance their professional expertise but also to contribute to the knowledge base of the profession.

Any discussion of spirituality in social work practice needs to address the core values that guide the operating principles of the profession (National Association of Social Workers, 1996). All of the practice standards of the social work profession speak to the overriding principle of the client's right to self-determination and freedom of choice. It is this principle that leads to the strong focus on advocacy for and on behalf of clients' rights. We model for the client, teaching

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assertiveness and advocacy skills that, when learned by the client and then combined with our efforts, make for a powerful approach to problem solving. No system is immune from the scrutiny of the social worker. Anything or anyone that affects the client is the purview of the social work practitioner, and its impact will be included in a good baseline assessment. We are concerned also with all aspects of the client's being — biological, social, psychological, cultural, and spiritual. Social workers who are truly culturally competent understand and appreciate their own differences from the client and are willing to work with these differences internally in an ongoing, dynamic, self-exploratory process. This is not easy to do with any issue, even given that the use of self in one's work is a fundamental aspect of social work education. Working with African Americans with HIV gives new meaning to the concepts of transference and countertransference. Working with people with HIV and AIDS has forced us to pay attention to multicultural issues. Cultural competence is a must in this — and all — work with people. In my experience, what is meant by these concepts has been variable. Truly understanding people in all their complexities and contextual fabric is what makes social work practice effective. Moreover, I submit it is essential to seek to know a client fully, with genuine interest in and acceptance of the person. This requires the social worker to withhold judgment, regarding and treating the client with dignity and as an equal. This is the essence of spirituality. ISSUES ADDRESSED IN WORK WITH PEOPLE WITH HIV AND AIDS My colleagues in an HIV medical care program used to say that HIV was tenth on a list of social problems that people who are affected must face, especially if they also are poor. The effects of the medical illness, especially for the asymptomatic or newly diagnosed, can sometimes seem incidental to the problems that African descendants living in poverty in the United States already face. Some of these problems are living with fear and hope, death and dying, sex, drugs, poverty, homelessness, violence, homosexuality, children facing death or loss of siblings and parents, and child placement issues. The list goes on to the extent that the greater proportion of the care for the HIV-positive patient is social. Physicians and other medical personnel who work with HIV patients recognize this and will consider the social worker an integral part of the team.


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In my experience, it seems that 95 percent of the work with people with HIV is social. The other 5 percent, however, is so critical that social workers also have to know about the medical issues as well. This is a relatively easy process for social workers who also work in medical settings. As part of the medical team they must complete in-service training — working in tandem with the physicians and nurses to provide up-to-the-minute support for the patient. I believe that this provides the patients who have acute illness or symptoms with the best model for support. In optimum conditions, the social worker on the team will know in advance of the planned disclosure of the disease to the patient and may sit in with the medical practitioner as the information is being delivered. On the ideally rare occasion that the social worker is not aware of a potentially disturbing new development in the medical sphere, there would be adequate social work presence to intervene in an emergency. I recall that in the program in which I worked, a child, whom I shall call Devon, was diagnosed with HIV while on the service of an internist. Twoyear-old Devon had been unexplainably sick for six months. His primary physicians, frustrated with his care and increasingly disturbed by the symptoms, decided to call in the immunologist, the medical director of the HIV clinic, to do an evaluation. After the appropriate tests were run and returned positive, the social worker, as part of the team, was alerted. As it became apparent that little Devon was infected, the social information was obtained from the unit social worker and nurses as a part of the preparation for a conference with the child's mother. All were set in place when our physician began to tell her of the test results. She had, of course, received pretest counseling, but I think that nothing feels very real to someone waiting for HIV test results. Not until that actual diagnosis is given does the reality hit some people. That was the case for Suzy, Devon's mom. When told that she is HIV-positive and had transmitted the disease to her newly diagnosed HIV-positive son, Suzy began to cry, and then to scream, and then she bolted from the room, running up and down the hospital corridors, crying and screaming. Fortunately the situation quieted down relatively quickly, largely because of the skill level, dedication, and flexibility of the varied immunology and other hospital staff who came forward to console and intervene with her. Social work follow-up after the initial diagnosis was crucial. It involved talking with the mother by phone; making a home visit, when indicated, to help her to talk through some of the issues; and assisting her in getting to the next visit. An assessment of the parent's coping skills and support system was made in an effort to help her determine who else may be brought into this new situation to support her. In addition, there was

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some discussion about how to pace herself in telling anyone, carefully reviewing the speculative reactions of the various people in her life based on to what degree each person had been emotionally supportive in the past. I generally believe it is a good idea that newly diagnosed people wait before telling anyone who is not absolutely trustworthy until they can begin to adjust to the diagnosis themselves. With that model, then, the client may be more open to establishing new, perhaps additional, supports that are HIV-specific, and that may also increase the chances for practical education about the disease, including hearing how others cope. This process of selecting in the interest of one's own self care is in itself a valuable lesson. To honor oneself in that way is, in my opinion, to be spiritual, that is, to reach deep within oneself for new ways to take care of oneself. SPECIAL ISSUES AND ATTENTION FOR AFRICAN-AMERICAN MEN As a matter of good social work practice, I strongly encourage the participation of the partners of the women and of the fathers of their children for a number of reasons. First, they may be a source of support for the woman and, most importantly, may also learn something in the process about how better to support her. Second, I believe that fathers have a right to the information about their children if the mother agrees, because a disclosure about the child also discloses the mother's status. The third reason to include partners and fathers is that it gives them an opportunity to make decisions for their own health. The same issues of knowledge, awareness, pretest counseling, and help with decision making about testing apply to them, not to mention that this will afford them the opportunity for early intervention if necessary. It is my contention, then, that whenever possible, it is ideal to have the father included in the plan of treatment for any family. In my experience, I have found that special effort is needed for this welcoming of the fathers in African-American communities. Now, why is that the case? Men, in general, are less likely to enter treatment of any kind. Because they are less likely to avail themselves of primary medical care, they die at earlier ages than women. Endowed with the privileges — and curses — that come with being "in a man's world," they tend to hold in more and talk less about feelings, which predisposes them to physical health problems in addition to undiagnosed emotional concerns. Black men have the additional daily stresses of being the most feared and despised group of people in this country. In addition to the disproportionately high


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numbers in prison, the figurative chains of psychological slavery are heavy. Generally misunderstood and denied opportunities, resources, or freedom of expression, they are set up for spiritual sickness and death. The system often excludes them from eligibility for services, assuring by its very design their separation from family. THE INVISIBLE MAN, THE WOUNDED FAMILY When the Bureau of Maternal and Child Health was created, were the service needs of the men who partner the mothers and father the children thought about? Not much, it would appear. In child welfare, to cite one system, the fathers are often what I call "missing and presumed dead." I have seen the phrase "father, whereabouts unknown" so often that it is troublesome. In many instances, however, I have learned that, with some probing and genuine interest expressed, the fathers do play a very important role in the child's life. Once social workers are aware that someone exists, however, the need for a special manner of approach and intervention arises. This calls for an examination of myths, attitudes, and stereotypes on the part of the practitioner so that respectful, relevant treatment that is not condescending is provided. The failure of the system to adequately support the reunification of families, along with the current movement to free our children for adoption because of their special needs, is passed on as a fault of our people rather than being seen for what it is — institutional racism in its purest form. I recall that one child welfare agency in which I worked brought me face to face with this phenomenon. The following narrative illustrates one way in which I see the perpetuation of the external divisive forces that exist for African-American families. I received a referral from a worker who told me many times about a mother who had thrown one of her children out of the window. This was relayed in very judgmental terms and given as a reason for the immediate foster care placement of the newborn. OK, I reasoned, of course we must keep the child safe while, I added, we assess the situation. The whole time I listened to the horror story, I wondered what could have been going on for this mother to have done a thing like that. I will never forget the day I first met the mother, Fatimah, who was in the advanced stages of HIV disease. No one had to identify her for me. She came into the agency, thin and frail, with her head hung low, making no eye contact. I extended one hand and clasped our joined hands with my other hand, letting her know how glad I was to meet her, and I thanked her for coming in. When I invited her into my office, I noticed that she was looking at me as though I had come from another planet. Simultaneously, she smiled ever so slightly and there was light in

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her soft brown eyes. The ice was broken. She became progressively more relaxed with each of the visits that were supervised in the agency. She would often seek me out, sharing her visit, taking and bringing pictures, and she referred to me sometimes as Malik's grandma or Auntie Pat. She shared one of the most painful life stories I've been privileged to hear. The pain had been handed down through the generations in such a way that she knew no alternative to it. Another thorn in the paw, adapted to without question. I was able to let her know what I saw in her, helping her, accepting her with all her human qualities, and encouraging her to work on the ones that diverted her from her goal of reunification with her son. First, she needed to reconnect with herself and her worthiness as a human being, to acknowledge her strengths, and then to forgive herself. She made great strides. Awareness, forgiveness, and growth are all spiritual gifts. At that point her husband, Hassan, was not in the city. She said that she had left him and wanted nothing to do with him, partly because he had been abusive. As I worked with her, however, I realized that after a period of separation the anger wore off, and she began to talk more about him. They resumed contact and it seemed that they would be reuniting at some point. Regardless of my thoughts and fears about that, I recognized his importance in her life. I directly addressed her relationship with her husband. She told me that she still loved him. The work with her, then, was to help her to keep herself safe as she continued to be involved with him. She learned this was easier as she grew to love herself, one day at a time. I met him shortly after our discussion, extending the same quality of care. He was grateful for the outreach and the manner in which I approached and worked with him. Some of my concerns about him began at the time of the initial referral. He had been more feared by the establishment than his wife. I knew that because of the disparaging comments made about him by the referring worker. I knew that I needed to increase my supports so that I could work through the issues of fear and judgment that naturally arose for me, given what I had been told about his past behavior. I quickly saw that, in some ways, he was more emotionally needy and more vulnerable than Fatimah. In addition, he had a confused and agitated style of speaking and had been deemed mentally ill, which made him even more formidable, and the tendency was to distance from him. He was high-strung, and it took more effort for me to relate to him. As I got to know him, however, I found he would calm down when I reasoned with and supported him unconditionally. Many months later, when Fatimah was dying, Hassan called me, and I went to her hospital room. When he stood with me at the bedside of his dying wife, he shared a lot more than I had previously known about him. He was beyond angry; he was enraged! He talked a lot about the treatment he had experienced in the system, some of which I knew to be true. As he ranted and raved about it and I listened, he began to self-monitor his behavior, and it was then that I saw the fear and the sadness in his eyes. He looked like a small boy who was about to lose his best friend. His wife was dying, and there was nothing he could do about it.


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That connection, symbolized in our eye contact, was a profound experience for me. As a man — a poor man, a black man — he had not been socialized to show his feelings. It seemed that his goal was to be heard and to get his needs met by any means necessary. Like so many black men with whom I have worked, rage and the threat of violence was, much to my dismay, his way of communicating those feelings. They were so intense that I challenge myself and anyone, given the same circumstances, to handle them differently. He needed to find more acceptable ways of expressing his feelings and to set boundaries. When he asked me for a ride from the hospital and I was unable to do so, I explained the reasons to him. He then gave me a spiritual gift. He told me that he understood and he trusted me to tell the truth because I had always done all I could for him and his family and that I had, from the beginning, treated him with respect. I thanked him for that. Sometimes we do not know what impact we are having on people, but I have learned that when I seek to see the good in people I usually find it and a whole lot more. It is important to acknowledge, set limits on, and otherwise work with a person's behavior but not to judge or dwell on it. I call this looking beyond the behavior to see the need. That is the juncture of good social work practice and spirituality. Work with Hassan was so profound, in part because, as well as I thought I knew his issues, I had underestimated what I call "the societal backdrop" of racism. He articulated it well as a feeling experience, and I began to see the entire situation through a new lens. It was helpful, actually a privilege, to be given a glimpse of his reality from his own perspective. SPECIAL ISSUES IN CAREGIVING FOR THE AFRICAN-AMERICAN SOCIAL WORKER Throughout my 25-year career, I have worked with people of various ages and races and from various walks of life and socioeconomic strata. In fact, my experience spans such varied lifestyles as those who live on the Philadelphia Main Line, one of the wealthiest areas in the country, to North Philadelphia, an area blighted to poverty. My work in both areas has been of high quality, characterized by a high degree of concern and genuine caring for all who have come for help. I believe that the early start I received in life, living in a predominantly white suburb from third grade through high school, gave me some skills in relating to white people that I might not otherwise have obtained. Because I had had so much

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experience with being the only black in many situations, I was and am able to cross over in my work and in my life. I attended college in the 1960s. It was meaningful and exciting to be part of a movement that sought to make things better for black people. I still have that spirit. I subscribe to the Code of Ethics of the National Association of Black Social Workers (1997) that says, "I adopt the concept of the Black extended family and regard all Black people as my brothers and sisters, making no distinction between their destiny and my own" (p. 1). It was not until I was in college that I learned things about my people that were good and about which I could feel proud. I had never been taught these things. There are still many children and adults who do not know the truth. I often wonder what our African-American communities would be like today if we were to really get it — to understand that we are the descendants of kings and queens who were kidnapped and enslaved, stripped of dignity. It is so disturbing that so many view our people with the slave mentality that has taught us to hate rather than to feel love and pride for who we are. To hold dear those truths and to impart them to African-American people I encounter has been an integral part of my style of practice and of life. When we are out working in the fields and "de sweat is on we brow," it is good to be reminded about our strengths as a people. It helps us to do more than survive; it helps us to become whole. Social workers are socialized and trained to work with the less fortunate, a nice word for those who are oppressed and denied opportunities and access to resources. I recently had a student ask me why I kept bringing in examples about black people when I talked about oppression. "There are white people who are poor, as well, " he said. I thanked him for the question and told him, unashamedly, that I do it because it is the right thing to do. The fact that there are poor white people is also unjust; it is abhorrent to me and just wrong. I went on to say, however, that, because of racism, there is a disproportionate number of African Americans who live in poverty and who have substandard housing and homelessness and poor health and earlier death rates and on and on and on, and yet it is not talked about. The truth has been withheld. Moreover, the perpetrators have projected the blame onto their victims. This student's question perfectly illustrates what I have experienced with many white people. It is uncomfortable to talk about African-American issues. Many times I have witnessed a glossing over of the issues if they are addressed at all, or an obscuring of the reality of racism by renaming it things like diversity or multiculturalism, or using the demeaning term "minority." How insulting! I, for one, am no minority and do not


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subscribe to that designation for my people, who are a worldwide majority in terms of numbers and not minor in any sense of the word. Furthermore, to be problack is often misconstrued as being antiwhite. Important issues do not get addressed adequately in some schools of social work, resulting in more social workers in the field who are ill-prepared to work with our people. As an instructor in a school of social work, I choose to set the record straight by giving time and attention to issues regarding my people commensurate with the intensity of the daily ongoing atrocities as well as the overwhelming strengths and richness of black people living in this country. The student was brave to ask, thankful for the answer, and admitted that he had learned more about black culture and the racial realities for African Americans in one semester than he had learned in all of his years of schooling. FACES IN THE MIRROR I have mentioned that many of my years of social work practice were in predominantly white settings. With that, however, I have also labored tirelessly for the advancement of my people. It has been an important aspect of my concept of quality psychosocial care. What I say next may very well be misconstrued, so close attention to not only my words but also the spirit of what I am about to say is in order. My pride as an African American is instantly felt when I encounter another African American. What I mean is that there is a certain spirit with which we usually relate. It is often felt, if not spoken, and there is a special connection. If I am on the street, there is a friendliness and warmth that naturally abounds. If I emerge from my office in the role of helper in an agency, often there is a look of amazement and eventually the comment, "I was so surprised [or glad] that you are black." In another situation, some conversation about being black will inevitably be initiated by the client behind closed doors that may not be held so readily otherwise. I resonate with them and they with me. Likewise, I have sought out African-American social workers and other professionals, building liaisons and forming alliances for the support and nurturance that comes with having a similar value and experiential base. I have worked in the community, on community boards, and in agencies in the service of large numbers of African Americans. Nothing, however, could prepare me for what it would be like to encounter large numbers of poor African-American and Latino people — families afflicted with HIV. To know the conditions of our people and to work in less intense spheres regarding the practice content is one thing. To sit day after

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day, week after week, with babies and children and their mothers and fathers, all infected or affected by HIV and AIDS, was truly a turning point for me in my experience as a black social worker and as a black person. As I have contemplated many plights and heard many stories told, my heart has cried out. More than once I thought, "There, but for the grace of God, go I." I recall one special young woman, Nina (I refer to many of them as special because they have great courage and dignity), who was 18 years old when I met her. Nina had had a tumultuous childhood and, as an adolescent, she ran away from home, drinking and drugging her life away. She had been diagnosed for some years prior to our meeting. She was a star — she was on the lecture circuit, and she was an HIV buddy and peer counselor. She was warm and genuine and had, with good counseling support and a lot of hard work over the years, worked through a lot of her original pain with her parents. She had a maturity brought on by that process, coupled with her attempts to rectify her strong spirit with her failing physical self. She was a delight. As time wore on and it was apparent that she was losing the physical battle, she became more scared and vulnerable. When she would receive bad news about yet another opportunistic infection or disease process she sometimes would get very upset. I especially recall a time that she fell into my arms sobbing, telling me about the way she felt her body was betraying her today, and saying to me, "Pat, I don't want to die." I will never forget that moment or the flood of my emotions. Now I know about countertransference issues and am respectful of the concept. I was fortunate to have outside clinical supervision to keep me on track, and, yet, it was a constant challenge to keep the professional distance I learned about in graduate school. Nothing seemed to prepare me for this. I had to have some place to put this pain. It had many manifestations. On the individual level, to be with someone in such a tender way is in itself enough to deal with. The intensity of my emotional state was then compounded by so many other griefs: the tragedy of a young black woman facing death; at that time we were serving more than 350 families, most of whom were black; we were also serving a large number of Latino individuals and families; and the knowledge that the largest increase of new infections is among some groups of people of so-called color. It all amounted to what was nearly an all-consuming experience for me. Faces in the mirror — young faces, young adult faces, men, women, children, babies — all who look like me. I hurt and I cried and I visited hospitals and I attended death-bed scenes and funerals and I hurt and I cried. I felt intense anger and a great deal of fear.


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THE FEARS OF THE AFRICAN-AMERICAN SOCIAL WORKER The anger was familiar, I am sorry to say. Every day it was the same old story — black people suffering from a disproportionate share of something bad. This was worse, however; it was unlike anything I had encountered before, and I thought I had seen it all. As I worked through my anger and my fear, I realized that something had been unleashed and was mightily affecting our communities and would continue to do so for generations to come. I realized that the fear of genocide — ever present for an African American — had become a part of my everyday existence. I was afraid and sad and angry, and I had to have some place to put it all. I had some significant experiences working with people with HIV as I witnessed their courage to live. As I beheld their efforts toward resolution, it seemed that their lives had become a spiritual journey that I respected and facilitated. I learned from them that I really had no problems to speak of. I had my health and strength and had been spared much of what they were dealing with. I learned to be very grateful for my life and its many blessings. In short, my spirituality deepened. That is a gift for which I am thankful. THE DEATH-BED SCENE When the young woman to whom I previously referred was nearing the end of her time on this earth, I went to her bedside. She was weak and frail, and her chest heaved and sank with every breath. She drifted in and out of consciousness, and I talked to her. I waited, along with her family and others whose lives she had touched who came to be with her. Nobody wants to or ought to die alone. I sat some and walked some and consoled others and was consoled and waited. Then something occurred to me. She was trying very hard to hold on. She was struggling against the inevitable. She was a survivor and had come through so many hospitalizations before, but this was different. She was dying, and she deserved peace. No one had to tell me this, I intuited it in my spirit. I leaned over by her bedside and began to soothingly, lovingly tell her that I was here for her and how much she meant to me and how I did not want her to struggle any more. I said to her, "It's all right. It is OK to die. You don't have to fight it." She was in a near coma; sometimes it is difficult to know if the person in coma can really hear us. I knew — I mean really knew — that she heard me.

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Now, how is it, do you suppose, that I knew she heard me? Well, I believe she did, and one thing that helps that belief is that, after "giving her permission to die," she very shortly stopped the heavy, labored breathing, and a peace seemed to settle over her. The lines in her face relaxed, her body became less taut, and she looked like an angel lying there, ready for whatever was to come next. I whispered in her ear, "That's it, you have nothing to fear. I care about you. Goodbye." Seeing her in that angel-like state caused something deep within me to release. I soon realized that I could go then. I left the facility. There was so much power and richness in that evening — a human transaction with an unmistakable spiritual component. By doing what came to me naturally and intuitively, I believe that, at that moment, I was the conduit through which the Spirit was able to work. I had, in the human sense, helped her to cross over, and it was beautiful. It was late when I arrived home — too late to call anyone for support. As I prepared myself for bed, I talked to God. I mean, I really talked to Him. I thanked Him for her life and my life. I thanked Him that I was able to be there. I got angry with Him. I expressed gratitude for my life and my health. I asked for strength and courage to go on and to be nourished so that I could do what lay ahead of me, not just tomorrow with regard to Nina but also to continue this work. I lit a candle for Nina and watched the flame dance, seemingly with glee. It was as full of energy and spirit as she had been. I awakened from my sleep, refreshed and a bit heavy as I recalled the previous evening. I was fortunate to be able to take some time for myself after calling my office to explain that I had had a long evening. I was very gentle and contemplative in the peacefulness of the morning. When I was ready, I called the nursing home where Nina had been living. I was told that she had "expired." I prefer to think of it as crossing over. She had made her transition to the next life. I wept. Before I called Nina's family, I called my clinical supervisor and talked with her about my experience. We made plans to meet later in the day. That was comforting to me. I was also helpful to be able to talk to some of my colleagues on the team at the hospital about the experience. Because we worked so closely with all the patients, we cared about one another's cases, and the loss was felt deeply by my colleagues. That helped to lighten my burden. ADDICTIONS AND HIV DISEASE Sometimes I wish HIV did not correlate so highly with drug abuse. Like homosexuality, it is something that the unconscious in our society


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can use to label, shame, and blame the person. "How did you say she got infected?" It does not matter, I say. It certainly should not matter to someone who has no personal involvement with the patient. It is one of the ways that we distance ourselves from people who are different and, I believe, it is one of the reasons that so many people are getting infected. Some people really believe that it could not happen to them — that somehow they are immune. This denial is deadly. THE SPIRITUALITY INHERENT IN RECOVERY HIV correlates highly with addiction. It is a fact that injection drug use is the vehicle by which many have been infected. Commonly known as the second wave of the disease, injection drug use and, more specifically, the sharing of drug paraphernalia, primarily needles, is responsible for the infection of countless thousands. Once this fact was established, the authorities set out to design prevention efforts that would curtail the spread of the disease by this method. Unfortunately, however, the link between HIV and street drugs gave the general public another reason to distance themselves from the disease and from the fact that other groups of people are also vulnerable. I shudder to think how many times I have fielded the question, How did they get it. This, I quickly realized, was really a question with inherent judgment about the person who was homosexual or a drug addict. It is a dividing question; surely they had gotten what they deserved by behaving in socially unacceptable ways. It did not even seem to make much difference when the third wave arrived and women who were the partners of those people became infected. The women and their children who were affected were likely seen as victims of something that was bad, wrong, and immoral, and the wrath of God had visited them all. I worked in a family program in a children's hospital and I must say there is a special flavor to the pain of witnessing a child struggle with the disease from birth. Infected children typically have developmental and neurological problems in addition to the opportunistic infections that, at times, claim their lives in tortuous ways. Many times as I attended the bedside of a little child, stretched out with tubes and machines and lines, I lamented that the little one never had a chance in life. He never knew what hit him. It was a struggle, indeed, to manage the wellspring of my emotions in that situation. Like so many, I could have become bitter and harsh. I sought, instead, to honor my feelings and to get help with them so that I could be a source of support and comfort to the parents, who were often

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filled with pain, guilt, and shame. It was intense for them. They did not need my judgment; they needed my compassion and unconditional positive regard for them as human beings with human frailties. My role as a social worker and as a human being was to be concerned about them and to help them to cope with the immeasurable suffering that can only be known by someone who is infected and who, often unknowingly, had infected their children. I understand that it is not only not helpful but also not my place to criticize someone else's behavior. I am reminded of John 8:7, which says "Let he who is without sin among cast the first stone" (Holy Bible). That helps me to remember we are all on our own spiritual path, our individual journey in life. I believe we all do the best we can with what we have been given and, also important, I believe that behavior should be separated from the person. When we regard a person as bad we have forgotten that what we are really talking about is their behavior. I remind myself that despite our behavior, we all were created by God and are precious to Him. While many people were busy shaking their fingers at the gay men and the drug addicts, they continued with their own high risk behaviors, ignoring the fact that anyone who had had unprotected sex 10 to 15 years before this disease became widely recognized was vulnerable. This truth was obscured in the rush to develop risk factors early in the epidemic: although it was important from the standpoint of prevention, it served to fuel the hatred and judgment of those whose behavior was abhorrent to many. It also let people off the hook, that is, it took the focus off their own behavior. As a result, many heterosexuals and people who do not identify themselves as addicted became infected. Unfortunately, those attitudes and the denial about the realities exist to this day and people continue their high risk behavior and the number of AIDS cases continues to grow. We live in an addictive society. For the sake of brevity, I will only mention addiction to alcohol, sex, legal drugs, compulsive gambling, food, and other people. An addict is an addict. Edith Springer, the well-known social worker from New York who specializes in addictions, delivers a powerful message to the general public who could readily identify with addiction if only they were to examine their own medicine cabinets. Drug use and addictive behavior are promoted in our society and called by various names that are acceptable to us. The point is, we are not taught, in general, to feel our pain; we are encouraged to run from it by any means necessary. Addiction and the accompanying behavior is a problem no matter what the substance or object. It robs people of life and of the joy of life. It lowers self-esteem and, I believe, at the same time, it is the product of low


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self-esteem. What are we running from? I have learned a lot from the people I know who are in recovery from addictions. I have seen miracles happen when people have the courage to put down the substance and turn to something, to someone else, to help them cope with the problems of life. I choose to be around recovering people because it is through their courage, strength, and hope that I have come not only to admire them but also to receive the bonus of identifying and emulating their virtues. The story of Nyiemah is an example of the gifts I receive by association. Nyiemah was 27 years old when I met her. She had five children, the youngest of whom was a seven-month-old girl who had been diagnosed recently with HIV that had progressed to AIDS. What this meant was that Nyiemah had, at the same time, received the news that she is was infected. When I initially met with her, she was devastated. She badly wanted to deny that this was happening to her. She had been in recovery from a prolonged addiction to crack cocaine, and her life was beginning to turn around. She worked on a strong program of openness, honesty, and a willingness to live one day at a time, and she was spiritually connected to her higher power whom she chose to call God. She had a good support system, attended meetings regularly, and was instrumental in helping others who were addicted to get sober and begin their own journey of recovery. Her older four children were in foster care, having been taken from her years before because she could not care for them when her addiction controlled her life. Years of addictively acting out rendered her unable to visit her children. When she did get sober, the guilt and shame of what she had done to herself and her children kept her from approaching the agency about seeing them. After two years in the program, which helped to strengthen her and give her perspective, she began the process of reconnecting with them; she was beginning to have some hope about reunification some day. Her recent pregnancy was not planned. Nevertheless, she was happy about the baby and saw her as a gift from God — a chance to do it right this time. The baby was sickly, and she had weathered all of that with the help of her recovery program. She had remained sober and that had given her even more hope for herself and determination to continue working her program. The diagnosis hit her hard, shook her to her very core. "Why now?" she asked. The formerly familiar feelings of worthlessness and meaninglessness came to visit her again in this crisis. I encountered this scenario many times. Women and men who finally felt like they could do this thing called life, one day at a time, were beginning to have some hope, then learned that they were infected. Was God playing some cruel joke on them? Is there a God? If they could come to terms with their belief that there is a God, then the issue became that they were so bad that God was not interested in them at all and the proof was in the present circumstance. These are deep spiritual questions that, I have

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to say, also shook me to my core. I could not answer these questions because I had some questions of my own, generated, in part, by witnessing their plight. This meant that I had to embark upon my own journey, questioning God, praying for guidance and strength and for deliverance from my doubts. I needed help, I realized. I sought it and struggled with the questions and, as a result, became richer and stronger. My spirituality was strengthened. Nyiemah had given me a gift. My own spiritual process gave me the freedom to be there for her. I helped her through the initial shock and grief and as we worked together, she was able to continue her recovery behaviors and to work at a deeper level on some of her psychosocial issues. She began to talk about her early life, which she had avoided previously. Thinking that the past was behind her, she was enjoying a good relationship with her parents and had, therefore, felt no need to explore her original pain. She was now ready to do that. She knew that she must, or risk relapse — she was holding onto a family secret. Nyiemah had grown up in a "respectable" family. Her father was a Baptist minister and her mother was also very active in the church as the first lady. She had grown up in the church, having been taken there at an early age and participated in Sunday school and the church choir. She was a model child, doing all the right things at home and excelling in school. She recalls that her parents were proud of her accomplishments. When she approached puberty, her behavior began to change. She became irritable and listless. Her grades began to fail. She did not want to go to church, but that was not an option for this family. Her parents said that she had gotten in with the wrong crowd, which was steering her in this direction. She also believed that. As I probed deeper, she was able to talk about some of the imperfections in this perfect family. She and her mother really did not get along but she adored her father. She was his favorite, and everyone knew it; it was an unstated source of tension in the family. Behind closed doors her father was a heavy drinker, and the whole family covered that up in the interest of protecting their image. She had been affected powerfully by that, as many children of alcoholics are. In addition, she told me something that she had not ever mentioned to anyone. Her father, when drinking, would come to her bedroom and fondle her, beginning at age eight, and that progressed to rape. She had endured and been silent about years of sexual abuse until she finally ran away at age 15, about three years after her behavior had begun to change. Nyiemah thought that when she ran, she could also run from that painful truth. She had believed what she had been told by her father — that she wanted it, that she was his favorite, and that she would destroy the family if she told. Despite all of that she loved her father. Her confusion played itself out in her behavior as she took on the role of the bad child rather than talk about her pain. She lived in the streets or with older men for years. She drank and drugged and sold her body and


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began to have children. She was lost and she knew it, but she was unable to do anything different because she did not feel she deserved anything different. Her parents initially attempted to help her but eventually gave up on her, convinced that her problems were because she had stopped going to church and that God had turned his back on her as punishment for her sins. She believed that, too. Four children later and after the pain of having them removed by the Department of Human Services, she surrendered her addiction and began her program of recovery. Encouraged by her own progress, she did not believe that she would need to revisit the trauma of having been sexually abused. We worked intensively on the myriad feelings and issues that had been brought on by that buried pain. She realized that she had kept the family secret, protecting her beloved father and preserving the illusion of the perfect family at the expense of her own soul. As she courageously opened that wound and let it drain, she was able to allow healing energy to flow, adding another dimension to her recovery. She was able to see that it was she who had been wronged originally. She had made the unhealthy decisions for her life in reaction to that and in her efforts to run from the pain. Her self-esteem began to improve; she atoned for her behavior and learned how to begin to forgive herself and accept herself in a balanced way — with all of her strengths and human frailties. Once she got the story straight in her own head, she then had a lot of anger surface toward her parents. That was difficult. She had been socialized, as have many, that anger toward parents is not acceptable, but she had to experience that anger so that she could stop internalizing it and destroying herself. In doing so, she realized she could feel anger and love simultaneously. She worked diligently on these issues. For her, it was a matter of life and death. U S I N G RECOVERY PRINCIPLES TO COPE WITH HIV Nyiemah's journey exemplifies the rewards of the 12-step program, among other things. The program teaches honesty, openness, and a willingness to trust. Being honest with oneself about one's own character traits and behaviors, finding the courage to be open, and trusting others who are safe with personal information help to reduce the shame one feels about having the disease. Hearing others share their circumstances — touching the point of the pain— sets an example and gives hope and strength. The program then calls for making a decision to change something in one's life when one is able. To want a better life and to be willing to seek recovery behaviors realistically, one day at a time, are some of the principles of this program that save lives and bring joy back into life. The other very helpful principle is that of staying in the moment. Worry about what will happen tomorrow or in the future can be overwhelming and seem impossible to avoid. Worry makes it difficult to hope for a way out

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of the present, painful situation. The essence of the one-day-at-a-time concept is to stay in the moment about issues, no matter how large or small. Deal with the problem in small, manageable pieces. Let go. If the issue or problem was not handled well, let it go at the end of the day. Do not carry it into the next day. See each day as a new beginning, a clean slate. For an addict, and I believe for many of us, this works well because it minimizes the chances for resentments to build. It is one of the established beliefs of recovering people that stored resentments clog emotional and spiritual lines, making it difficult to feel in control — a perfect set-up for relapse. Recovery is a way of allowing oneself to be human and to find oneself. All of this, along with remembering to have gratitude for what one has received today, develops a relationship with a higher power that is sustaining in the best and the worst of times. Another thing I like about the 12-step program is the principle of keeping the focus on oneself. "Live and let live" is one of the many helpful slogans used in the program. Living one's own life is a full time job. There is no room in that model for judgment of others or focus on their weaknesses. People with strong recovery do not do this perfectly, but they do hold these principles dear, seek to reach these goals, and are willing to grow along spiritual lines. I think that is a good prescription for all of us. In my opinion, spiritual growth is inherent in good social work practice. The values and the ethical principles of the profession that were enumerated earlier in this chapter speak to the spiritual principle of believing in the dignity and worth of the client and are guidelines for how we relate to others. The guiding principles of the profession call on practitioners to reach deep within themselves to address bio-psycho-social-cultural-spiritual issues as they affect their clients and themselves. When this "spirit in the work" is acknowledged and allowed to flow, all who are in the process on both sides of the desk are powerfully touched. THE STATE OF SPIRITUALITY IN AFRICAN-AMERICAN COMMUNITIES TODAY The Blessing in Having the Disease Many times I have heard people express gratitude for getting infected, because otherwise they might not have stopped their self-destructive behaviors. The other thing I have heard is that HIV is the best thing that could have happened to them. It has helped them find themselves, to establish meaningful relationships, and to feel a sense of community and purpose in life. Whenever I hear this, I feel extremely sad. What a com-


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mentary on the emotional and spiritual nourishment that is missing in the lives of these people! To be grateful for a disease that slowly and systematically consumes the body (regardless of the powerful spiritual journey toward acceptance) and to see that as the best thing that could have happened says to me that the needs of people have not been met outside the context of suffering and preparation for death. The Role of the Church in the Spiritual Development of the Black Community The following is based on my experiences as an African American with a personal history in the black Baptist church and on my work with clients who have shared their experiences. Some content is likely to be controversial. Take what you can use and leave the rest. Historically, the black church has been both a spiritual haven and a social institution. It has been the focal point for many who may not have had status in other arenas in their lives. Early in our history in this country, there was no place that an African American could be highly regarded or be called miss or mister except in the church. It was a bastion of pride and accomplishment for many of our people. It is difficult for me to separate the tenets of Christianity, in general, from the relevance of the institution and the doctrine to the lives of an oppressed people so that while I am speaking about the black church some aspects will necessarily overlap with Christianity. What I do know is that there is much focus in the church on overcoming the negative. Surviving the burdens and toils and disappointments and evil in this world is a fundamental part of the teaching, accompanied by the hope for a bright side somewhere, which is in heaven, once we die and get our crown. There is exhortation to love our neighbor and for children to obey their parents and for all to respect our elders. Suffering and pain are seen as necessary aspects of this life, to be overcome by being faithful, trusting in God, and doing his work, that is, going to church, giving service, and giving money. When I was in graduate school, I was challenged by the belief in the necessity of suffering I had learned in my church. One of my professors asked how much, in that frame of thinking, might we subtly or unconsciously bring suffering to us, or even create it, so that we might have something to overcome. That idea had a profound impact on my thinking. When I think of the psychological construct of recreating the pain in our lives until we resolve it, this makes a lot of sense to me. Where, then, is the joy on earth? I would find myself asking. The message I got is that because we are born into sin we started out in deficit; the goal is to be

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reborn in Christ, who died for our sins, and to do His will. We are nothing, except in Him, says the doctrine, and we are admonished not to forget that we are nothing and that He is "the Way, the Truth, and the Life and that no man cometh unto the Father [God] except through Him" (Holy Bible, John 14:6). I must say that listening to this in church Sunday after Sunday and singing about being a worthless worm that had to do something —lots of things — to become worthy had serious implications for my self-esteem. It left some serious gaps for me in my understanding of God. The other thing that I had trouble with is the contradiction between how I was told to behave and what I saw in the behavior of those who were doing the preaching and the teaching. There was downright exclusion of those known to be adulterers, homosexuals, and drug users, yet it was pretty common knowledge who was running with whose wife or husband in the church, both hetero- and homosexually, and there were more than a few addicts and alcoholics. I also overheard a lot of backbiting and gossip, even among the church leaders, and I was very confused. Today I am not as confused about these contradictions as I am very saddened. I often ask questions about spiritual support when I interview people living with HIV Sometimes they think I am talking about church affiliation and have some comment about how it does not work for them. They express feelings about being judged and being unwelcome. There is also an accompanying feeling of shame and guilt; many people believe they should be in church. Many African-American adults were reared in the church, often a very powerful early life experience. Also, many receive the message that one must serve the Lord, which translates to must go to church to be pleasing in God's sight and to avoid the burning fires of hell and a life of hell on earth as punishment for one's sins. I am concerned about all the fear, judgment, and shame that is inherent in this preaching and these teachings. I think this has separated many people from the church and many cannot see God for the nonsense. Of course, the ultimate disgrace is that some people with HIV have been literally ostracized because of their disease or because they are gay or bisexual or addicted. Some churches have refused to have funerals for members or family members who have died from complications of HIV. I do not believe these practices are pleasing in God's sight. It is particularly sad that the church is not the resource it could be for AIDS-related tragedies. People who have HIV are often in dire need of the love and compassion and community that are the stated reasons for the existence of the church. In addition, the ostracism I have described is inconsistent with our history, both in this country and in our motherland,


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Africa. Historically, the black church has helped African Americans survive slavery and other forms of racism. It served as a vehicle for connection to God and, as such, the faith of individuals and of the collective was developed and strengthened. It was one of the few places that black people could receive some recognition, status, and positions of power on a consistent basis. It was a training ground for children and a potential empowerment zone for enterprising adults. Djawotho and Quansah (1996), in their book African Heritage in Black American Churches, discuss some aspects of our African heritage that have been preserved in church customs and practices. Some of the first Africans who came to America chose the church as a means to establish their culture. Historically and ideally, African-American churches function like a communal society where all become brothers and sisters. The concept of economic cooperation, self-help organizations, beneficial societies, and friendship associations evolving from the church was influenced by the communal structure of the African way of living. I often wonder if the role played by the church as a social institution for people who are denied the social opportunities of the dominant culture has not contributed to its undoing. I recall one of my cousins, a deacon in a Baptist church, said to me once, "White people go to church to worship, black people go to church to socialize." There was more to his sentiment, which has been lifted out of its context. Nonetheless, I think it speaks to the troubling aspect of mixing things spiritual with social mobility. It seems it is a set-up for clouding the spiritual agenda that, for me, simply stated, is to live and let live and to love oneself and others unconditionally. I would like to see the church as a reprieve from the harsh realities of social institutions, which is difficult because of all the needs it fulfills for African-American people. I often wonder whether the church contributes to the internalized oppression and self-hatred we all experience in various forms. Please know that these are my musings; they have evolved from my experiences. Certainly many people get their spiritual needs met in the church. In fact, my vision for our communities is that we can return to more of the regenerative aspects of our culture. MY VISION FOR THE FUTURE African Americans are a spiritual people. We are more than survivors. We are creative. We are resilient. Many of us, moreover, have learned to shake off the evil aspects of acculturation, discovering the beauty of our heritage and making inroads into knowledge about who we are, who we

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were meant to be, and how slavery and the centuries of lies about our value have made us a confused people. In countless ways, we African Americans are discovering ourselves and expressing ourselves within an African frame of reference. This is evident in many externals, such as manner of dress, hairstyles, name changes, Africentric cultural activities, models of practice, and so forth. When these outward symbols of Africanness reflect internal transformation, it is truly beautiful. When we take on these symbols, we demonstrate a spirit of community; we have a spirit of willingness to be there for each other. Some African Americans have attained material success. When emotional, spiritual, and cultural growth and development accompany that, these sisters and brothers feel they have a responsibility to reach back and to reach out to help others of our people who are still economically trapped. This can happen in all kinds of ways. To enumerate all of my thoughts about this is larger than the scope of this chapter; however, I will say that, in general, I want for us to continue to develop as a people in our sense of who we are and of whose we are. We are all created equal in the sight of our creator. Some of us, however, are not as in touch with that as others, as witnessed through our reliance on other measures of retaining our well-being that are actually only a temporary fix. When that misguided reliance leads to negative consequences, such as addiction and disease, it is painful. What those who have these and other painful consequences need is our unconditional positive regard — to love us, if you will, until we can love ourselves (Alcoholics Anonymous, 1976). REKINDLING THE SPIRIT OF FAMILY I am encouraged by the personal and community empowerment model set forth by the Rev. Dr. Willie Richardson of the Christian Stronghold Baptist Church in Philadelphia. In his Reclaiming the Urban Family (1996) he gives his prescription for mobilizing the church as a family training center. He is a leader and teacher who seems to be cognizant of a great deal of what people need in their everyday lives. His is not a book about HIV. What I like about it is that it addresses myriad problems that our people face in relationships, with finances, and in the church. I believe that one way to combat HIV is to see it as a wake-up call. With all the issues that beset our communities, we have not one more man, woman, or child to spare — to anything, let alone to this dread disease. We cannot do this, however, if we do not come together. Nothing pains me more than to see social workers look in a shallow way at the behavior of our clients or the consequences brought about by their unspoken truth


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and pain. I believe we need to stop buying into a model of practice that regards our people as deficient. I hope we see the need to rekindle the spirit of family. To truly adopt the "concept of a Black extended family . . . and to make no distinction between their destiny and our own. . . . To regard as our primary obligation the welfare of the Black individual, Black family and Black Community and . . . to engage in action for improving social conditions" (National Association of Black Social Workers, 1997). When we regard that as our professional commitment and loving responsibility to our people as well as to ourselves, as part of the community, we can begin, in the spirit of Harambee (Swahili, loosely translated, meaning "pulling together"), to see more healing of all kinds for our people. REFERENCES Alcoholics Anonymous. (1976). Alcoholics anonymous: The story of how many thousands of men and women have recovered from alcoholism, 3rd ed. New York: Alcoholics Anonymous World Services, Inc. Allers, C. T., & Bernack, K. J. (1991). Connections between childhood abuse and HIV infection. Journal of Counseling & Development, 70, 303-313. Djawotho, K., & Quansah, K. (1994). African heritage in black American churches. Atlantic City, NJ: International Christian Association, Inc. Grier, W., & Cobbs, P. M. (1968). Black rage. New York: Basic Books. Holy Bible, King James Version. National Association of Black Social Workers. (1997). NABSW code of ethics. Detroit, MI: National Association of Black Social Workers. National Association of Social Workers. (1996). NASW code of ethics. Washington, DC: National Association of Social Workers. Peck, M. S. (1978). The road less traveled: A new psychology of love, traditional values and spiritual growth. New York: Simon and Schuster. Richardson, W. (1996). Reclaiming the urban family: How to mobilize the church as a family training center. Grand Rapids, MI: Zondervan Publishing House. Siegel, B. (1986). Love, medicine and miracles. New York: Harper & Row.


3 Strategies for Effective Intervention with African Americans Ednita M. Wright

The AIDS pandemic is far from over, even though responses associated with the virus have drastically changed with the efficacy of treatments that prolong the lives of individuals privileged enough to access them. For African Americans, new advances in prevention and intervention strategies, health services, and pharmaceutical products are merely a painful reminder of a legacy of exclusion and discrimination. As the number of African Americans languishing with HIV/AIDS dramatically increases, treatment services and auxiliary support remain either inaccessible or culturally insensitive, thus leaving the majority of those in need without adequate services and exacerbating the pervasive ennui of many AfricanAmerican communities in addressing the issue of AIDS. Inequities in health care for African Americans are clearly brought to light by the continued negligence and use of culturally insensitive strategies that dominate prevention, intervention, and treatment methods. Additionally, the deafening silence from traditional community leaders and institutions must be challenged. Returning from an international conference focused on AIDS in Amsterdam, Alexis, who boldly confronted her community by putting a face to the pandemic, was full with an urgent need to share what she had learned: "I had to tell my people what was really happening, what I had learned at the conference. It has been real hard trying to get people to listen. I didn't know how to get people to understand that I really believed that AIDS could really be the thing that could

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get rid of the black population." The devastation of AIDS cannot be denied; an entire generation of African Americans is at stake. Homophobia must be confronted and removed as a barrier to advancing a unified plan that will eventually decrease the numbers of African Americans dying with AIDS. This chapter discusses impediments to effective intervention and their consequences; prevalent intervention models and diversity issues; challenging the dominant paradigm; implications for social work practice; and recommendations for clinical practice, research, and policy. If this pandemic and its cataclysmic aftermath are to be obliterated it will take all of us — those inside African-American communities and those outside. In the social work tradition we must eradicate any barriers, by any means necessary, that keep us from challenging the status quo of prevention, intervention, and treatment models and regimes that are steeped in racist epistemologies. They isolate behavior from the context in which it is found, discounting the economic, political, and cultural realities that shape behavior. The time is now. Too many African Americans have died waiting. IMPEDIMENTS TO EFFECTIVE INTERVENTION AIDS is the leading cause of death among African Americans between the ages of 15 and 44, and in 1995 more died from AIDS than from homicide, cancer, or heart disease (Wilson, 1997). African-American women are 15 times more likely than white women to have AIDS and 67 percent of all children with AIDS are African American (Wilson, 1997). Recognized intervention strategies to date have proven mostly to be ineffective in sustaining behavior change within our communities. There have been a variety of barriers discussed within HIV/AIDS literature in the past decade connected with attempts to understand the lack of response of African-American communities to prevention and intervention strategies. Although characteristics (poverty, crime, drugs) of the sociopolitical and economic environment of many urban African-American communities and the myths that emerge have been noted as possible deterrents to behavioral change, they have not been adequately investigated. The constant interplay between the people and their environment affects, among other activities, sexual behavior. Continuing to ignore this dynamic, particularly in research studies designed to develop or test prevention and intervention strategies, is to miss opportunities that could potentially decrease the number of those infected in African-American communities.

Strategies for Effective Intervention

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Four impediments that are tightly woven into the fabric of AfricanAmerican communities are the historical distrust of health care services, poverty, alcohol and drug abuse and drug traffic, and stigma. Historical Distrust of Health Care Services Receptivity of prevention and intervention strategies has been greatly hampered because of negative experiences African Americans have had with earlier prevention and intervention programs offered by health care and government institutions. The most notable historic event is the 40year Tuskegee Syphilis Experiment that brought 400 African-American men "to autopsy" (Jones, 1981) by recruiting them as research study participants with the promise of free health care. HIV prevention education, risk reduction interventions, and access to treatment strategies seem quite similar to methods used to recruit and retain participants of the Tuskegee Experiment — the use of indigenous staff, incentives, and the provision of health services (Thomas & Quinn, 1991). Furthermore, the myth that the virus originated in Africa depicts African Americans as virus carriers. The connection to Africa has been proven false, but the discord and cynicism it created further separated African Americans from health care services, institutions, and risk reduction programs and strengthened the belief that there was, and is, a conspiracy of genocide. The historical relationship between African-American communities and government and medical personnel, social service workers, and researchers is a part of the environmental dynamic that must be taken into account. Quick prevention surveys, short-term interventions, medical and pharmaceutical treatments, without consultation, do not provide the time for relationship-building and, therefore, cannot adequately reduce the suspicion and fear. Delia, a client, describes her internal process as she decides to stop adhering to her prescribed medication regime (Wright, 1995): I said they trying to kill me. That is how I think, it is really hard for me to trust people, since so much of things that went on with me that they didn't know and didn't ask about what it was. So, I had that doubt and thought that they be trying to do something to me. If Delia had felt that she had a collaborative relationship with her health care provider, she might not have placed herself at risk and continued her medication.

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Poverty The effect of poverty on the quality of life chances cannot be overemphasized. Clearly, an individual's socioeconomic class is a major determinant to the quality, accessibility, availability, and opportunity of resources that will enhance life chances. The highest percentage of HIV/AIDS cases are centered in poverty-stricken, urban, inner city areas, where many African Americans live. Additionally, just as for other persons with HIV/AIDS, the cost of health care and pharmaceutical interventions depletes limited resources and the onset of opportunistic infections renders some unable to work. Angela feels she is in a catch 22 situation because she is not yet sick enough to receive benefits from the government and not well enough to work (Wright, 1995). "Now basically my problem is that I have a lot of little health problems, little opportunistic diseases and that is a good name for them. Trying to get funds, trying to go to the doctor, trying to compensate for not working and acquiring transportation. [There are] special foods and things like that [that you need] and even when they give you Medicaid, it is still not enough. It is not enough with a daughter in college, it wouldn't be enough even if I didn't have her." The ability to meet basic needs (food, shelter, and clothing) coupled with limited opportunities to meet these needs sets the stage for the cycle of hopelessness, self-destructive behavior, and desolation. Violent crime, alcohol and drug abuse, high unemployment rate, health concerns inadequately serviced, poor education, and the recent welfare reform program, all inhibit the likelihood of safer sex practice. This reality produces other issues that are directly related to the quality of living for a person with HIV/AIDS. Generally, for most health concerns, African Americans enter into treatment later than European Americans. This is largely because of the imbalance of power and privilege, manifested in limited or no health insurance, a lesser likelihood of having personal physicians, and mistreatment by health care institutions (Bair & Bayleff, 1993), exemplifying a stark racial division. Treatment at later stages of any disease lowers the probability for recovery or improved quality of life. African Americans diagnosed with HIV/AIDS have generally experienced opportunistic diseases before seeking medical attention. In addition, because of the grief work inherent in the process of accepting the diagnosis, the depression, isolation, alienation, lack of support, and denial are fully present with no avenue for relief. The first encounter with a health provider is critical, therefore. Dismissing class (socioeconomic status) as


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an issue further complicates the success of prevention, intervention, and treatment. Further investigation is needed to determine whether preliminary findings that stress produced by living in an unsafe environment contributes significantly to health issues that plague African-American communities (Beardsley, 1990). There is even discourse regarding the connection between stress and susceptiblity to the virus. Living in poverty is stressful, living with HIV/AIDS is stressful, living as an African Americans in these United States is stressful. Continuing to construct service models without poverty in the equation evokes the belief in a conspiracy of genocide. Alcohol and Drug Abuse and Drug Traffic Intravenous drug use has become the primary mode of transmission of HIV for both women and men. In African-American communities, the association with drug trafficking and abuse is a complex and historical one. Drug abuse (including alcohol) and drug trafficking have permeated African-American communities for decades. Simultaneously, it has stunted community growth and financially supported families. Although in the short term it has seemed to relieve psychological suffering, it has incarcerated many of our people, including children, and in the long run drugs and alcohol have destroyed hope while intermittently creating the illusion of achieving the American dream. Drugs have stigmatized African-American communities. Even with this knowledge African-American communities have been silent. In "AIDS in Blackface," Dalton (1989) explains that the distancing of African-American communities from the pandemic was not directly in response to the physical manifestation of AIDS; rather, it was in reaction to the social issues that come with it, particularly the relationship between AIDS and drug abuse. Harm reduction programs have the potential to significantly decrease HIV infection among intravenous (IV) drug users. Harm reduction initiatives, particularly needle-exchange programs, have been met with hostility and outrage by African-American political and civic leaders. This anger, or unveiled distrust, is rooted in an historical context of perceived persistent neglect of the drug abuse epidemic, the belief in a conspiracy of genocide, and the lack of faith in the intentions of the dominant community (Thomas & Quinn, 1993). Additionally, needle-exchange programs highlight the politics of drug availability, the lack of adequate and accessible treatment programs, and the controversy related to whether these programs contribute to continued drug abuse.

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Nevertheless, the use of contaminated needles, syringes, and other paraphernalia is the most effective route of infection (Weissman & Brown, 1995). The marriage between HIV/AIDS and IV drug use holds within it the potential to debase African-American communities beyond that which was endured during the Holocaust. Needle-exchange programs reduce the necessity for IV drug users to use contaminated needles, thus controlling the spread of HIV among drug users, their partners, and children (Fortunato, 1996). The next step would be the expansion of drug treatment programs and the rigorous evaluation of programs offering services for these issues. If we do not act quickly to reduce the spread of the virus among IV drug users, we condemn those not infected to infection and those who are infected to death Stigma The first public appearance of HIV/AIDS promoted the virus strictly as a "white gay male disease." Literature was developed and disseminated concerning transmission and promoting safer sexual practices for the gay male population. At that time African-American communities believed that HIV/AIDS was not an issue that required attention. In the past decade, as the number of infected African Americans steadily increased, communities were forced to confront their myth of immunity, their denial of diversified sexual orientations, their fear of contagion and increased stigma, their homophobia, and their delayed responsiveness, all of which assisted the spread of the virus. More important, long-standing lesbian and gay community members were left to endure the manifestations of the virus alone, sick and dying. Historical and contemporary stereotypes have labeled African-American women and men as dirty, dangerous, sexually promiscuous, and aberrant, among others. These stereotypes have been internalized so that people are often defensive and hesitant when discussing sexual conduct — a necessary component of prevention, intervention, and treatment programs. These stereotypes also add to the tension of partner negotiation because the use of protection is loaded with power differentials that are not easily or commonly discussed. Two African-American women participating in an HIV risk reduction intervention research project (Carey et al., 1997) illuminate the complexities: I went home and talked to my man about our class yesterday and he accused me of going out on him.


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I liked what you all had to say the other day and so I tried to joke with him about using a condom and what fun it could be — and he got real mad. I just left him screaming and went down the street and got me a 40 ounce. Requesting the use of protection for these two women placed them at risk for domestic violence, for the withdrawal of financial support, or the end of the relationship. These realities must be acknowledged and programs promoting safer sexual encounters must develop strategies to address them. PREVALENT PREVENTION MODELS AND ISSUES OF DIVERSITY Most prevention and intervention strategies are based on the fact that AIDS is a consequence of behavior. Current theory-based intervention and prevention programs, therefore, focus on the reduction of risk behaviors and the adoption of safer sex practices. The four dominant models that guide most programs are the health belief model, the social cognitive theory, the theory of reasoned action, and the transtheoretical model (Fishbein & Guinan, 1996). The health belief model suggests that an individual must feel personally threatened and must believe that the benefits of change outweigh the barriers. The social cognitive theory identifies self-efficacy with respect to the behavior and incentive to perform the behavior as essential to change. The theory of reasoned action involves the intention of the individual to perform the given behavior and is fueled by the individual's attitude and the subjective norm concerning the behavior. The transtheoretical model views change as a process that consists of five distinct stages — precontemplative, contemplative, behavior exploration, action, and maintenance. Several factors in each of these models are critical to whether an individual will be motivated to change behavior: perception of risk, beliefs about the positive and negative consequences, perceived community norms and support, and self-efficacy (Fishbein & Guinan, 1996). It seems obvious that consideration of these factors would need to include a thorough assessment of the targeted community's norms, values, beliefs, codes of conduct, and indigenous health practices, in addition to the availability, accessibility, and affordability of services and the political and economic environment that either supports or defeats efforts to perform and maintain behavioral change. Kelly (1995), in Changing HIV Risk Behavior: Practical Strategies, notes two root ingredients necessary for changing behavior: that the

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individual believes there is risk and that change will lessen that risk. Risk is relative and is measured against other daily occurrences inherent in an individual's environment. In addition to risk, one must determine whether the change will increase personal power or privilege, given the environmental context. Prior to the initiation of an intervention, therefore, empirical data must be gathered to ascertain the meaning the targeted community ascribes to changes in behavior as they relate to risk, power, and privilege and to the environmental context in which the behavior change must take place. First there must be open acknowledgment and dialogue that allows the expression of distrust and fear experienced by some African Americans concerning the historical legacy of the Tuskegee Experiment. Ignoring this historical fact, which is the usual response, only intensifies the fear and results in lost credibility of health professionals. Engaging in this dialogue would lead to a better understanding of intervention strategies that may increase those fears so that alternative methods can be developed and employed that are more culturally sensitive and acceptable. In addition, assumptions related to the client's level of AIDS knowledge, comfort in discussing sexual practices, level of familiarity with safer sex techniques, and basic knowledge of anatomy and physiology, to name a few, must be challenged. Current education concerning HIV infection varies from community to community. Some African-American communities include members that have received little or no AIDS information. Comprehension is highly dependent on the literacy level of the individual, which subsequently affects the behavioral outcome. The stigma associated with HIV infection further decreases the ease with which current practices and safer alternatives can be examined. Condom use is the primary method encouraged in prevention programs. A typical program component is practicing the proper positioning of the condom on a penis. A couple of issues surfaced during the facilitation of the research project (Carey et al., 1997) mentioned earlier in this chapter that are clearly illustrated in the following participant quotes: I amfifty-threeyears old . . . there are other things you can use besides those . . . that don't bust. . . but I do know how to use them. . . . Why you think I wouldn't know how to use them when I am a grown woman? I notice you got a dental dam over there but we ain't practicing with that. What if your partner don't have no penis? Clearly the methods employed were perceived as demeaning and defined relationships as heterosexual. There were also many assumptions inherent


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in the information given, particularly as it related to anatomy and physiology, which became most apparent when the female condom was introduced. You got to be kidding. . . . You don't mean that I am to put that up me . . . I don't know where that would go. . . . The only thing been up me is my man. In summary, the assumptions brought to the prevention or intervention may need to be abandoned and replaced by approaches that address the clients' and participants' real lives. Intervention and prevention programs that continue to exclude the environmental factors that influence the behavior of African Americans will continue to be ineffective. The risk of HIV infection may be less relevant when measured against other social, economic, and health issues that are perceived as more life threatening (Quinn, 1993). For AfricanAmerican women, involvement in programs that encourage condom use, without male participation, often leaves them in potentially volatile situations. The risk of losing economic support, social status, and relationship may far outweigh the risk of HIV infection. Participants in an intervention research project (Carey et al., 1997) stressed the importance of including partners, particularly males, as illustrated in the following quote: Why are you talking to us — why ain't you talking to the men? How are we gonna get them to use a condom if they don't want to — why are the women always being picked on? Whether an African-American woman believes she has the right to protect herself, and, thus, negotiate with her partner, depends on such factors as her age, her comfort level in discussing intimate and sexual matters, her self-esteem, her level of role definition adherence, the potential threat of violence, and the length of her relationship with her partner, to name a few. AIDS prevention and intervention cannot succeed with messages limited to condom use, dental dams, or abstinence. Strategies and techniques must be developed to enhance the communication skills of African-American women, empowering them to negotiate with their partners about how and under what circumstances sexual activity will take place and stay safe. Effectiveness of prevention, intervention, and treatment programs will increase when strategies that seek to promote, instigate, encourage, and motivate changes in behavior acknowledge the legitimacy of environmental

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influences in how AIDS is perceived and addressed within African-American communities. CHALLENGING THE DOMINANT PARADIGM Consider ways to critique and challenge the paradigm that has defined the agenda; defined the response strategy (for example, the Ryan White CARE Act); and defined treatment, prevention, services, and research. Specifically, until now the experience of gay white males largely characterized the shape and form and context of the dialogue. The experience of disenfranchised populations may need to define the context, shape, and form of the dialogue from this point forward. This dialogue and challenge must begin at the foundation of the mechanism that drives prevention, intervention, and treatment models: research. The dominance of a few prominent researchers and theoreticians sets the research agenda of the nation, leaving little room for innovative thinking and program development. Research protocol and methodologies must be grounded in African-American social and historical experience. Historically, the purpose of knowledge production (that is, research) for African Americans was not just to build theory. Knowledge was used as a means to vindicate African Americans from internalized and externalized oppression and to make society more just. Research must reflect the contextual realities of African Americans. Racist epistemologies must be challenged and others must arise from the African-American experience and win validity and legitimacy. If this challenge is not met, more profound and pervasive trauma will be created by the continued use of racist epistemologies. Such trauma infects minds, hearts, emotions, and spirits with distortions that necessitate the painful struggle of accepting and rejecting internalized negative and debilitating self-conceptions (Scheurick & Young, 1997). Research protocols cannot be devoid of ideologies that are free of racism. This is not to say that all research is intentionally racist, but that methods employed or hypotheses considered cannot be separated from the researcher. The researcher's location in the social structure is based, partially, on relations of race, social class, and gender; location frames what we see and consider significant. If we fail to recognize the ways in which social location influences the construction of knowledge, we are unlikely to change the established knowledge that contributes to the continued oppression of African Americans (Banks, 1995). The first step would be to acknowledge that research outcomes cannot be separated from researchers, just as researchers cannot totally separate


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their objective data from the context in which they were socialized. If we, as outreach workers, prevention specialists, social workers, social scientists, psychologists, care givers, nurses, and community activists, are to make any significant headway in decreasing the ravages of this pandemic, we must confront the issue of racism. Assumptions, filtered through racist lenses and promoted as truth, leave African-American communities in a sea of hopelessness and despair. The result of these distorted educated guesses, affirmed and passed into this culture as objective truth, become the basis of individual, group, and institutional attitudes, decisions, practices, and policies (Scheurick & Young, 1997). The current level of health care inequality — the lack of accessibility to and opportunities for quality services, the exclusion of the dynamics of race relations from the development and implementation of models for prevention and intervention — is unacceptable. Researchers, service providers, and social workers must acknowledge that responses emerging from African-American communities regarding prevention and intervention strategies are intricately intertwined with the current condition of race relations. Any analysis that does not accept and reflect on this larger reality, therefore, is bound to miss the mark (Fernando, 1993). IMPLICATIONS FOR SOCIAL WORK PRACTICE The African-American response to the AIDS pandemic has been well documented and discussed (Dalton, 1991; Wilson, 1997; Wright, Blackburn, & Taylor-Brown, 1996). We have learned that our perceptions, no matter how rational, have often led us astray when we have been seeking solutions to such a pervasive tragedy. We know that AIDS is not only a gay white man's problem. We have (reluctantly, in some instances) admitted that our people have diverse sexual orientations and we have survived the panic caused by the conspiracy theory regarding the origin of the virus and its potential to destroy our people — a bitter reminder of past tragedies that have possibly been geared toward our annihilation. Most important, what we have learned from our experience is what has not worked for our community. Ironically, this journey has led us back to ourselves and our tradition of community involvement and mutual regard, united in faith that, once more, we will overcome adversity. Focusing only or predominantly on modes of disease transmission is not enough for African-American communities. The entire fabric of the community must be considered and this includes many societal aspects that have an impact on the community, such as racism, history with services, politics, culture, geography, world view, gender, and accessible

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resources (Fullilove et al., 1991). For these reasons, community as the target of intervention — grounded in the ecosystem perspective, which assesses the individual and the environment and informed by cultural knowledge and responsiveness (Luckey, 1996) — has been embraced as the appropriate approach to addressing the issues of AIDS in the AfricanAmerican community. Assaulting the AIDS pandemic through an educational, skills-building (communication and negotiation), and behavioral change process and facilitated concurrently throughout a number of systems within the African-American community may provide a decrease in the transmission of the virus. It may also assist in re-establishing the sense of kinship that has been decimated through living in a hostile environment and deepened by the advent of HIV/AIDS. The models discussed earlier in this chapter, which are culturally respectful of and appropriate to the realities of African-American communities, can provide a starting point. Crafting programs for AfricanAmerican communities must include rebuilding connectedness through a sense of neighborhoods and community responsibility; values and principles; a sense of heritage, ethnic pride, and identity; and reliance on traditional community institutions. Most African-American communities are weighted by despair in their current situation with AIDS. It is critical to address this lack of hope if any significant changes are to be realized. Gutierrez (1990) marks four associated psychological changes crucial for moving individuals from apathy and despair to action: increasing selfefficacy, the belief in one's ability to produce; developing group consciousness and shared fate; reducing self-blame; and assuming personal responsibility. Serious consideration of the psychological changes, coupled with the aspects of connectedness, will influence the current belief system so that change can take place and be maintained. Five issues are addressed by this process: accurately assessing level of risk, strengthening hope, solution credibility, decreasing isolation, and increasing community support. This framework is directly aligned with social work principles that promote addressing real situations in communities and providing opportunities for collaborative program development while considering the complexity and strength of the fabric of the community. RECOMMENDATIONS FOR CLINICAL PRACTICE, RESEARCH, AND POLICY Social workers have the opportunity to highlight the importance of assessment and service provision in collaboration with communities.


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Social workers also have the opportunity to return to their roots — to advocate for the disenfranchised and oppressed. This advocacy must call attention to the inaccessibility of services to those infected with AIDS. As social workers, we are ethically bound to advocate for this population and change this odious inequity (Wright, Blackburn, & Taylor-Brown, 1996). Social workers must promote and insist upon the idea that environment influences behavior. It is important to recognize that the deterioration of some African-American communities leaves them, at times, unable to separate the negative impact of other political and environmental issues and AIDS. Social work researchers must lead the way in identifying ways to alleviate the current lack of African-American researchers. Why are there not more trained minority personnel? Has the system failed to train minority community researchers? Do systemic and institutional problems account for the lack of trained personnel? Answering these questions and others may increase the pool of African-American researchers and provide new services. The traditional supporting principles of African-American communities — survival of the group, commonality, cooperation, collective responsibility, and interdependence — must be upheld and supported. REFERENCES Bair, B., & Cayleff, S. (1993). Wings of gauze: Women of color and the experience of health and illness. Detroit, MI: Wayne State University Press. Banks, J. A. (1995). The historical reconstruction of knowledge about race: Implications for transformative teaching. Educational Researcher, 6, 15-25. Carey, M. P., Maisto, S., Kalichman, S., Forsyth, A., Wright, E. M., & Johnson, B. (1997). Enhancing motivation to reduce the risk of HIV infection for economically disadvantaged urban women. Journal of Consulting and Clinical Psychology, 65(A), 531-541. Crouse Quinn, S. (1993). Perspective AIDS and the African-American woman: The triple burden of race, class, and gender. Health Education Quarterly, 20(3), 305-320. Dalton, H. L. (1991). AIDS in blackface. In Nancy F. Mckenzie (Ed.), The AIDS reader: Social, political, and ethical issues (pp. 125-143). New York: Meridian. Fernando, D. M. (1993). AIDS and intravenous drug use: The influence of morality, politics, social science, and race in the making of a tragedy. Westport, CT: Praeger.

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Fishbein, M., & Guinan, M. (1996). Behavioral science and public health: A necessary partnership for HIV prevention. Public Health Reports, 3(\): 5-10. Fullilove, M. T., Weinstein, M., Fullilove, R. E., Crayton, E. J., Jr., Goodjoin, R. B., Bowser, B., & Gross, S. (1990). Race/gender issues in the sexual transmission of AIDS. AIDS clinical review, 6, 25-62. Jones, J. (1981). Bad blood: The Tuskegee Syphilis Experiment — a tragedy of race and medicine. New York: Free Press. Kelly, J. A. (1995). Changing HIV risk: Behavior practical strategies. New York: Guilford Press. King, M. B. (1993). AIDS, HIV and mental health (pp. 149-162). London: Cambridge University Press. Luckey, I. (1996). HIV/AIDS prevention in the African-American community: An integrated community-based practice approach. Journal of Community Practice, 2(4), 79-90. Scheurick, J., & Young, M. (1997). Coloring epistemologies: Are our research epistemologies racially-based? Educational Researcher, 26(4), 4-16. Thomas, S. B., & Crouse Quinn, S. (1993, Autumn). The burdens of race and history on black Americans' attitudes toward needle exchange policy to prevent HIV disease. Journal of Public Health Policy, pp. 320-347. Thomas, S. B., & Crouse Quinn, S. (1991). The Tuskegee Syphilis Study, 1932-1972: Implications for HIV education and AIDS risk education programs in the black community. American Journal of Public Health, 81, 1498-1506. Weissman, G., & Brown, V. (1995). Drug using women and HIV risk reduction and prevention issues. In A. O'Leary & S. Jermott (Eds.), Issues in the primary prevention of AIDS. New York: Plenum. Wilson, P. (1997, January). Our problem. Journal of the International Association of Physicians in AIDS Care, pp. 29-33. Wright, E. (1995). Deep from within the well: African American women living with AIDS. Doctoral dissertation, University of Michigan. Wright, E. M., Blackburn, E., & Taylor-Brown, S. (1996, fall). African American women still remain invisible: Are social workers doing enough? Clinical cultural competencies issues. NSWAN Readings and Writings, 7(3), 49-64.

4 The Challenges of an AIDS Service Organization Executive in Harlem Willis Green, Jr.

In this chapter I will share my experiences as a social work professional within the AIDS service industry. I have learned from these experiences and trust that, by sharing this information with others, new trails will be made in the jungle that is out there. This chapter is divided into seven sections: What We Were and Are Up Against, Strategies, The Harlem United Model, Outside Environment, Running the Agency, The Board of Directors and Staff, and Spiritual Principles. WHAT WE WERE AND ARE UP AGAINST In 1988, the AIDS epidemic began to show its face to the black and Latino communities of Harlem. In that year, the number of AIDS cases among African Americans exceeded the number among whites for the first time. Since then, the gap has widened. In 1995, 80 percent of all newly diagnosed cases were people of color. Although AIDS prevention strategies for New York's gay white community have worked, they have not managed to change the sexual behaviors of blacks and Latinos. In 1997, with a combined adult population of 406,520 in the New York City neighborhoods of Washington Heights, Inwood, Central Harlem, and East Harlem, 10,128 people were diagnosed with AIDS. These neighborhoods represent the heart of New York City's black and Latino population, and these statistics show the alarming rate at which the disease is spreading.

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I am the executive director of Harlem United: Community AIDS Center, New York City's largest AIDS service organization located within the black and Latino communities. Harlem United and I have been thrust to the forefront of the new AIDS crisis. Harlem United has grown threefold, practically overnight, as a result of the impact of disease on New York's Uptown population. Before the behaviors, knowledge, attitudes, and beliefs of AfricanAmerican and Latino men who sleep with men (MSMs) can be discussed along with values concerning prevention strategies for substance users, one has to understand the culture in which they live. The most prevalent issue in terms of HIV prevention that affects these populations is that many African-American and Latino men do not identify themselves as gay or bisexual but will only acknowledge same-sex activity when placed in the context of doing so for money, drugs, or survival. Making money by hustling in the city's sex establishments, bars, and parks provides a real opportunity for disadvantaged men to earn a living. The experience at Harlem United further indicates that the self-report of same-sex activity among black men is inaccurate because of the negative social implications of homosexuality. Review of data collected upon intake into services at Harlem United indicates that only 20 percent of the male clients identify themselves as gay or bisexual; however, when questioned about past sexual behavior, more than 75 percent indicate male-to-male sexual activity in the past 10 years. Although HIV transmission in African-American communities is primarily viewed as a problem among heterosexual injection drug users and their sexual partners, the proportion of AIDS cases among African Americans attributed to male homosexual or bisexual activity (36 percent) is almost equal to that attributed to injection drug users (38 percent). This invisibility creates enormous difficulties for the development of effective AIDS prevention strategies. Many black and Latino, gay and bisexual men have great difficulty affirming their sexuality within their communities' cultural values and norms. A study of 131 predominantly Hispanic and black, gay and bisexual males in New York City found that 80 percent engaged in anal intercourse with men and that 22 percent had bartered sex for money or drugs. For the young, the problems are even more complicated. For black and Latino youth, condom use is typically initiated one year after becoming sexually active. The survey found that 52 percent of study participants never used condoms or used them inconsistently. Substantial percentages reported use of alcohol (76 percent), marijuana (42 percent), and cocaine or crack

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(25 percent), and researchers found a significant correlation between sexual risk behavior and current alcohol or drug use.1 MSMs of color are burdened by systemic problems of racism, poverty, and homophobia. These men are more likely than white MSMs to be poor, homeless, or unemployed; have less education, less access to health services; or be foreign-born and not literate in English. Wide gaps in social service networks exist for MSMs of color. "Being both homosexual and a person of color in America, where problems of identity formation in the face of intense stigmatization make either one of these identities more than enough for one individual, particularly a young person, to cope with."2 Understanding the HIV epidemic among African Americans and Latinos requires an examination of how such factors as poverty, denial, and racism collude with the virus to kill. Unlike the factors that united the gay community of New York City and forced it to respond promptly to the AIDS crisis, the black community did not react quickly. When the virus descended on the black and Latino communities, many facts were known about the disease and transmission mechanisms. When articles first appeared that highlighted a mysterious type of cancer in gay men the white community at risk lifted an eyelid and opened an ear. There was no such article or wake-up call for the black community. We were facing more pressing obstacles, and, for many, AIDS remained a problem for gay white men. Those who were affected did not have political influence to demand and make changes and, for those who were infected, it was more realistic to hide, face the consequences, and keep the truth hidden from as many people as possible. The church, Harlem's source of pride and power, took on the same mentality as those who were infected and in hiding. The stigma associated with AIDS and homosexuality made church leaders hesitant to get involved and people with HIV found themselves on a waiting list of problems to be addressed. The general population's changing attitude regarding AIDS showed increasing compassion toward people living with AIDS, but the black and Latino communities did not follow suit. Unlike gay white communities, a dramatic change in public attitude and response to the disease could not occur in Harlem until church leaders became involved. STRATEGIES An effective strategy for contesting AIDS in New York City's black and Latino communities involves culturally relevant HIV prevention messages, education directed toward a community whose roots are spiritual

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and church based, and contemporary case and medical management for people already infected. MSMs do not relate to gay-identified HIV prevention efforts. To promote behavior changes (reduction in high-risk behaviors for HIV transmission) in vulnerable populations, members of the population at risk must be sensitized to the threat of AIDS. Behavior changes must be encouraged as normative in these populations. Various approaches to community interventions for the modification of high-risk practices have been demonstrated to be effective in other communities including social marketing, outreach, and community mobilization. Social marketing involves reaching out to an MSM community that is hidden in and interwoven with the general population. Marketing strategies must be created that will reach the entire population and yet not offend the public or frighten away individuals who do not wish to be labeled as homosexual or gay. Outreach involves not only the distribution of materials that provide a method for safer sex but also finding those who are in need of services and enrolling them in programs within their own communities. Community mobilization is the greatest challenge for the community of Harlem, not only in terms of HIV/AIDS prevention and treatment but also for such other issues as politics and economics. The church must serve as the leader in this mobilization process. There is clearly a gap in interventions aimed at reaching the Harlem community at large and engaging them in a process to shift norms. Currently there are no broad-based, community-level interventions for HIV prevention targeted to MSMs in communities of color. Sexual identity is the major barrier to dissemination of adequate HIV prevention and eduction information in the African-American and Latino MSM communities. Identification as heterosexual despite same-sex sexual behaviors causes disregard for education and outreach materials presented to gay-identified audiences in a culture that assumes HIV is a solely homosexual issue. These barriers include language, the secretiveness of the MSM population, the shortage of services targeted to non-gay-identified MSM, denial of risk among many MSM, the misperception that AIDS is a disease of gay white men, the tendency of men in general not to seek social services, and the absence of prevention techniques for non-gay-identified men. After nearly two decades of despair and denial over the AIDS epidemic, the black community is beginning to grasp the many problems incurred when poverty collides with pandemic. One such example is the success of Harlem United: Community AIDS Center. The political climate of New York City changed dramatically with the election of a new mayor. The climate was hostile for small, community-based


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organizations in minority communities. The majority of AIDS organizations in communities of color vanished under these hostile conditions. THE HARLEM UNITED MODEL Harlem United survived these adverse conditions and difficult times mainly because of careful planning around the development of a primary medical care facility for people living with AIDS. Those of us planning the future of the organization knew that a cure for AIDS was not likely to be found for many years. With this in mind, Harlem United's recently constructed Adult Day Health Center (ADHC) was planned in early 1990. No one predicted the tremendous cutbacks in Medicaid, but we did know that major changes in the health care system were in the works, and that managed care was one possibility. This made an adult day health facility the most realistic approach. The services once offered by the 41 small community-based organizations that vanished during the first few years of the AIDS epidemic needed a new medium. Harlem United's reputation in the community as an emerging leader helped to secure new funding from government sources for both AIDS prevention and housing services. The Harlem United staff increased from 28 to 75 in a one-year period in 1996. Almost overnight, Harlem United found itself one of the largest minority AIDS organizations in the nation. When new statistics released from the Centers for Disease Control and Prevention evidenced that AIDS was ravaging black and Latino communities, many turned to the new leader, Harlem United, for answers. Harlem United responds to the dire need for AIDS services by providing direct physical and emotional support to meet the survival and longterm needs of hundreds of homeless, formerly homeless, and disenfranchised HIV-positive individuals in the Harlem communities. The continuum of care offered by our agency is unmatched elsewhere in Harlem and includes outreach and prevention services, scattered site housing, a day center, a hot meals program, case management, pastoral care, referrals, and a variety of supportive and educational groups and workshops. In October 1996, Harlem United opened its ADHC. This fulfilled our founder's goal of a one-stop shop in which program members who may be suffering from AIDS-related exhaustion can receive all the services they need at a single location in their community. Harlem United's ADHC is designed to meet the needs of individuals living with and threatened by HIV and AIDS. Often this population does not feel welcome or understood in health care settings currently available

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to them. Situations exacerbated by poverty, inadequate living conditions, or substance abuse issues make it difficult for some individuals to keep medical appointments. Others suffer from inappropriate or uncoordinated medical care received from health care providers inexperienced with AIDS-related illnesses. This lack of primary care poses a fatal risk for those with an already impaired immune system. It also leads to more costly crisis care in the form of emergency room visits and longer or more frequent hospital stays. This day treatment program engages individuals who might otherwise be reluctant to seek primary medical care through meals, activities, and other services. The ADHC provides nursing, medical, and psychiatric services; TB screening and follow-up; and coordination of specialty medical care, social services, nutritional services, physical and occupational therapy, substance abuse counseling, health education, and case management. Other services include recreational and massage therapy. Services to the majority of clients is Medicaid reimbursable, which ensures a consistent source of funding, but Harlem United welcomes all from the community who are living with HIV to take advantage of the services offered under the ADHC program, even those who are not Medicaid eligible. One example of the importance of adding an ADHC to our other services involved a Harlem United client who is now deceased. The client went to a clinic repeatedly where he was improperly diagnosed and treated for a skin irritation. Each time the client saw a different doctor and each time he complained that the medication he was given had failed to alleviate his problem. This client was hospitalized because of kidney failure, the result of a condition that was treatable at an earlier stage. Harlem United's ADHC helps to prevent scenarios like this by offering coordinated, quality medical care provided by professionals experienced in caring for people with HIV/AIDS. This eliminates the needless suffering of our program members and reduces the overall cost of providing them with health care. Harlem United also offers a highly successful hot meals program. Breakfast, lunch, and a snack are served in the day center daily. Lunch consists of five courses (salad, soup, entree, vegetables, and dessert). All the meals served in the day center are nutritionally designed to meet the needs of people with HIV/AIDS and are culturally appropriate for the population we serve. Our delicious Afro-Caribbean meals draw clients to our program initially, providing the first incentive for them to confront and combat their disease by joining our other programs and support groups. Nutritional counseling is also offered to program members as a part of the medical treatment aspect of our culturally-sensitive, continuum-of-care model.


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The pastoral care program at Harlem United is dedicated to meeting the spiritual and emotional needs of the terminally ill. It offers bereavement counseling for the terminally ill and their families; preparation of Living Wills and Health Care Proxies; a buddy program, which supplements our staff with volunteers who conduct home and hospital visitation, providing companionship, assistance with errands and grocery shopping, and information; inclusive celebrations of holidays; and quarterly retreats to a rural setting. Harlem United addresses HIV prevention through its Outreach, Prevention, and Education Department, which features two prevention programs geared to this population's particular culture and circumstances. The first reaches out to those living in the streets or in single-room-occupancy hotels. The program draws socially isolated individuals into a supportive setting through seminars and get-togethers where the prevention messages are delivered and reinforced. The second focuses on the more stable population and utilizes leaders and institutions within the Harlem community where people naturally find their support. Church choir directors, barbers, and Harlem house mothers are trained as peer educators and continue to benefit others with their knowledge after their participation in this program has ended. Both programs feature ongoing prevention seminars, workshops, and informal get-togethers. The most powerful weapon for fighting HIV and AIDS in Harlem, as in other communities, is prevention, and I have made prevention my agency's priority. In addition to existing prevention methods, such as condom distribution, Harlem United realized there was a need to develop new methods for changing the social norms, attitudes, and behaviors of black and Latino MSMs and women who sleep with women (WSWs). With funding from the New York State Department of Health, Harlem United started its outreach, education, and prevention program in 1994. Three special aspects of the program involved AIDS education and outreach to three sectors of the Harlem community that are not necessarily considered havens for MSMs or WSWs but venues that normally would not be considered a place to find the AIDS prevention message being distributed freely. The first such venue was Harlem church choirs. The church would never admit that its choirs are as much a sanctuary for gay and bisexual men as any bar or disco, and Harlem United would not admit that either, but we do find Harlem church choirs offer excellent acoustics for singing the AIDS prevention message. The Harlem United choir campaign targets choir directors of the congregation and encourages them to take a leadership role in distributing the prevention message. The directors are offered leadership training to increase prevention awareness and are

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assisted by Harlem United's base of peer educators. Harlem United's peer team attends choir rehearsals to provide brief prevention presentations. The church choir outreach effort culminates in a gospel festival with a choir competition. Food and prizes are offered as incentives for participation. Harlem United approaches Harlem barbershops in the same manner it approaches church choirs. Barbers are trained on the facts regarding the spread of HIV/AIDS and the practice of safer sex, and they are encouraged to talk about safer sex in their establishments. Barbershops are offered a supply of prevention materials including condoms, lubricants, and palm-cards that describe the importance of practicing safer sex. Eventually, the chatty environments of barbershops include the topic of safer sex and AIDS. A "Safer-Cuts" competition is held annually for the barbers who participate in the program. This event focuses on the issues of AIDS prevention and offers area barbers the opportunity to compete with one another, using their hair cutting talents. Prizes and trophies are awarded during the event. Much of the effort of the outreach, education, and prevention program at Harlem United during its first two years of operation focused on the development of prevention materials designed with black and Latino MSMs and WSWs in mind. The results of our efforts yielded a program that soon gained national attention and won praise from national leaders. Finally, the general public began to see that many AIDSaffected individuals were blacks and Latinos, and many were turning to Harlem United for help and leadership. It was with this response to Harlem United's outreach materials that I decided to reach out to others across the nation who were attempting to create effective AIDS prevention programs for blacks and Latinos. The Harlem United scattered-site housing program is designed to improve and maintain an AIDS sufferer's ability to function in the community for as long as possible. Harlem United oversees 100 scattered-site apartments. These apartments include family and individual units. Because scattered-site housing is provided in conjunction with our other services, clients receive an exceptional level of care. The work of scattered-site is intensive and personal, providing encouragement and life skills to help integrate homeless people or families into their new, stable residences. Scattered-site apartments are also located in close proximity to our ADHC, allowing housing clients access to that center's supportive services as well. Case management and substance abuse counseling are provided by the staff at scattered-site. Volunteer services at Harlem United work to utilize resources of the Harlem community and those who are compassionate to further enhance


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their programs. Volunteers are used to perform functions ranging from being a buddy to working in the kitchen or assisting in the agency's fundraising efforts. Harlem United's mission is to provide quality HIV prevention and care services in a safe environment while uniting the diverse communities of Harlem to address all the needs of people living with and threatened by HIV and AIDS. We do this through physical, emotional, social, and spiritual empowerment, regardless of one's age, sexual orientation or identity, national origin, or ethnicity. The agency creates its vision through its work to eradicate HIV/AIDS from our communities using all available resources, thereby ensuring dignity, providing hope, and protecting the heritage of those we serve. As the faces of AIDS change, so will the body of Harlem United. The principles under which the agency is governed are: As Harlem United progresses, it will endeavor to maintain its unique characteristics while assuring accountability and quality in systems and practice. Harlem United will continue to ensure the integrity of its commitment to diversity as characterized by its mission statement. Harlem United is committed to protecting the future of the greater Harlem community through investing in the human resources of the community and providing quality services to those in need. Harlem United will continue to foster the empowerment and participation of community members in the planning and development of its programs. Harlem United will demonstrate its commitment to the ongoing development of staff by investing in opportunities for professional growth, education, and support. Harlem United will continue to support the community's efforts to respond to the HIV/AIDS crisis through networking, collaborating, and developing linkage agreements with community groups. It is our intention, in both letter and spirit, to remain ethically responsible to our communities, our supporters, and ourselves by upholding these principles. OUTSIDE ENVIRONMENT As a social work professional and administrator, I believe professionalism and respect for others are the best instruments for success and for creating one of the nation's largest and most respected AIDS service organizations. I do not have the reputation for being calm, cool, and

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collected, however. When the community where I grew up and the people I love who live there are faced with a pandemic, I do what it takes to be noticed and get what we need to survive. When I assumed the position of executive director of Harlem United, it was obvious the organization lacked publicity. The organization then was called "The Upper Room AIDS Ministry." We were looked upon by the few outsiders who knew us as the offspring of some Harlem church that fed drug addicts and handed out Bibles. To others more involved in AIDS activism, we were one of a handful of small community-based organizations in Harlem trying to duplicate the success of Gay Men's Health Crisis (GMHC) in the black community. Back then, the need for HIV prevention specific to the black community was beginning to surface. Individuals living with AIDS in such communities as Harlem were required to travel downtown to receive treatment, counseling, and other services. Often they would walk right past the doors of Harlem United, not realizing that we existed. I decided to obtain support from a leader in the fight against AIDS within the black community, an individual with widespread respect who could affect public policy and motivate leaders in the black community to respond to the AIDS crisis. Such a person would help to put Harlem United on the map. Undisputedly, the individual to talk to was the chief executive officer (CEO) of a national AIDS organization who was a major influence in public policy regarding AIDS. For months I attempted to contact the person. Regardless of the pleas made to assistants, receptionists, and everyone who stood between the legend and myself, the call-back never came. I was the new kid on the block. It was a shock to realize that prestige would not follow the new title placed after my name. Although the title may have had a larger impact within the white AIDS community, it did not change a thing in Harlem. It was time to make everyone take notice of Harlem United and me. I realized that once I made the decision to demand attention, it was all or nothing, win or lose. I met with an executive director of another AIDS service organization in Harlem. She, at least, returned my call. We discussed the issues of AIDS in the black community and what needed to be accomplished to stop the spread of AIDS in Harlem and to provide quality services to those already infected. Competition for funding between AIDS service organizations in Harlem was tough. Providers of AIDS services shared many of the same program members and were duplicating services. No one cared when someone in Harlem complained; it did not matter. We were not a force to be reckoned with, and what was worse we were not organized and


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working as a team. My colleague and I decided to begin meeting regularly for professional support and to work with each other around the issues of duplication of services, advocacy strategies, and ways we could help each other and, in the long term, help people living with AIDS in Harlem more effectively. A rumor circulated that the CEO of the national AIDS organization previously mentioned was leaving her agency. I drafted a letter to all the AIDS service organizations, public officials, foundations, and government agencies in New York City that deal with AIDS issues stating: "Please join us in a special emergency meeting (The National Organization) is losing esteem. CEOs and executive directors, we would appreciate your attendance to address (the CEO's) departure from this agency and to discuss recommendations and suggestions for the organization's future as it relates to providers and the black community." Instantly, I received a call from the CEO. She explained to me that she was not leaving the agency and wanted to set up a meeting of the directors of AIDS service organizations in Harlem to clear up all the misconceptions. In response to her request, I wrote: "This letter is to confirm my telephone conversation with you on Friday. I am pleased you are staying at your agency. However, I do hope that we can foster better communication between Black providers of AIDS/HIV services and your agency. As discussed, I would be glad to host a meeting with you and the Black HIV/AIDS service providers. Hopefully, ongoing meetings of this nature will minimize misconceptions." Overnight I was a hero in Harlem. I received telephone calls and faxes from executive directors of agencies in Harlem that I was not aware even existed. "Take no prisoners," stated one executive director. I was the underdog with nothing to lose, but the CEO's reputation was on the line. Finally, all the black leaders in the AIDS service delivery system of Uptown New York City began to work together. Nearly 20 people assembled at Harlem United's scattered-site offices the following Wednesday to meet with the CEO. The meeting proved to be beneficial to all. We learned that we needed to communicate with one another. AIDS service organizations in Harlem were small. None of us had the resources to compete with downtown agencies, but as a collective we could make a loud enough voice to be heard and respected. The CEO helped the group to see the need for formal organization. We agreed to hold weekly meetings under the name of Harlem Agencies Collective Effort. The group was comprised of the senior decision maker of each agency represented to ensure that strategies and plans made by the group would more likely be carried out. The CEO's agency agreed to work more

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closely with service providers in Harlem. Most important, through this first meeting we learned not to be afraid of one another. Competition is natural in the not-for-profit sector, and with just under 50 organizations providing AIDS services in Uptown New York, fierce competition will exist. We agreed, however, to work as a team to help each other out when possible, and to offer professional support to one another. Harlem Agencies Collaborative Effort was comprised of executive directors from about 15 agencies. We experienced difficulties in obtaining the representation of senior level managers from each agency, so we made a rule that only executive directors could attend. After this rule was strictly enforced, the group size diminished to ten. The group changed its name to The Harlem Directors Group and established an organizational charge: To act in collaboration with and as advocates for the people of Harlem who are affected by HIV/AIDS. To ensure visibility and a voice for disenfranchised populations within the Harlem community. To share information, identify duplication of services, and ensure coordination of services with a focus on the needs of the community. To plan for the needs of the community utilizing data, evaluation, and research findings to inform the planning process. To engage in discussions regarding funding, service delivery, expansions/streamlining, and policy issues utilizing consensus decision making. To hold one another accountable for adhering to decisions made by the Group, and to develop an ethical process for dealing with disagreement among individual members of the group. The Harlem Directors Group also set forth a list of principles: Planning and decision making regarding services and funding must be focused on the needs of the community. Collective action is critical to community survival. A common vision is needed to ensure that disenfranchised populations are well served by the participating organizations. It is the goal of AIDS service providers to minimize suffering and to improve the lot of people affected by HIV/AIDS. Issues of justice and equity are central to fighting the AIDS epidemic. Services for people affected by HIV/AIDS must be based on individual and community empowerment. The Harlem Directors Group served as a springboard for my appointment as a voting member on New York City's HIV Planning Council and as chairman of the Mental Health Workgroup of the council. The council is responsible for determining the guidelines for the distribution of Ryan White Title I funding in New York City. Additional council duties include planning for the comprehensive delivery of HIV-related services and monitoring the allocation process of Title I funding. The New York City


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region received $115 million in Title I funding over the past six years. Since the inception of this funding, communities of color have been left out of the funding arena. I knew my blatant unwillingness to back down had worked to get me appointed to the council, and I was determined to remain actively vocal. I learned quickly that gay men and lesbians are just as forthright as I am. Undoubtedly, the greed of a few members of the planning council could easily be misconstrued or interpreted as racism when the good old boys from GMHC and other predominantly white AIDS service organizations are standing in line to ensure they get their piece of pie. Blacks, Latinos, and women were the new groups emerging into the forefront of the pandemic. Gay white man, who were first to face the crisis, now assumed that they were the experts in providing services. Because of this, they felt they were the group most experienced in helping other groups of individuals; however, statistics show that HIV prevention messages for gay white men are not effective for black and Latino communities. For instance, a poster on a subway showing two gorgeous blond men hugged up with matching rainbow-ring necklaces around their necks is not something a "Bangee Boy" from Harlem can relate to. I also would like to see anyone try to determine the proper methods for discussing safer sex with a "ruff-neck" cruising in St. Nicholas Park. During my tenure on the HIV Planning Council, we focused on demonstrating that money for AIDS in Harlem could be spent and used most effectively by those who live there. I try not to scare people, however, and usually will apologize after I jump up on the conference table and scream like a fool. People have begun to warm up to me downtown. Sometimes it seems as though members of the group attend the meeting just to see what I might do, but even downtown folks have praised me for my efforts and strategies. Another important organization with which I have associated myself is the National Social Work AIDS Network (N-SWAN). N-SWAN's purposes are to foster communication and support among social workers who work in the field of HIV/AIDS; advance HIV/AIDS social work practice through continuing education; advocate for programs and policies to meet the psychosocial needs of people living with HIV/AIDS and their partners, families, and care givers; establish liaison activities with existing HIV/AIDS social work groups and other professional and human service organizations; and promote the highest professional standards and ethics in the practice of social work in the field of HIV/AIDS. I realized the importance of such an organization and it served as the perfect means to

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share the resources of Harlem United and what it had learned regarding the spread of AIDS within black and Latino communities. I was appointed as the president of N-SWAN in 1995 and used the position as a springboard for assembling a team of professionals who could put aside their egos and begin to create effective models for both HIV prevention and treatment. What actually formed was a group of pioneers in the fight against AIDS, as the disease shifted course and was preparing to destroy black and Latino communities across the nation as it had the gay community in the early 1980s. RUNNING THE AGENCY The biggest challenge as executive director is finding a means to harness the power of the black community of Harlem, the wealth that does exist here, and the influence of Harlem's church leaders — channeling our own resources — to create a weapon for fighting the disease for our own people. Raising money for an AIDS organization in Harlem, frankly, is like pulling teeth. This task has proven to be my most difficult responsibility as executive director of Harlem United. I come from the old school. When you tell me no, I come back with a larger set of pliers! Harlem United receives more than 80 percent of its funding from government sources. With the implementation of the ADHC and the new feefor-service environment, the restrictions imposed by government contracts are fewer for the agency. With such a dependence on government funding it is a very difficult task to juggle politics and the need for advocacy. Making the wrong statement about an elected official could result in the discontinuance of funding for Harlem United. Other leaders of AIDS service organizations have criticized Harlem United and me, in particular, for cultivating relationships with political leaders who are not noted for their compassion toward people living with AIDS. With such a dependence on government money I know not to bite the hand that feeds us. It is much more productive to growl on occasion. Raising money from private sources and individuals is a talent, I must admit, I have not come close to mastering. It would be so much easier if I could give a fire and brimstone sermon to the community of Harlem on a weekly basis and pass around an offering plate. It seems that to many, charity is a coat one wears twice a year. The development department of Harlem United is in a constant brainstorming session to try to help our community develop passion for the masses who are living with this disease.


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Motivating the huge resource of black entertainers to help raise public awareness and funding for AIDS can be frustrating at times. One wellknown Harlem community organization was approached to perform at Harlem United's annual special event, "The Harlem Life Awards." Like the CEO of the national AIDS organization, telephone calls were not returned and letters were not answered. With the assistance of a Harlem church leader, we finally received a telephone call telling us they were not interested. One year later the same organization performed at a benefit for GMHC. Harlem United has been fortunate to receive the support of such celebrities as Ruby Dee and Ossie Davis, Keith David, Carmen Delavallade, Mercedes Ellington, Maurice Hines, Ashford and Simpson, and Tommy Hilfiger. Harlem United's largest donor is an individual I met at a bar on Christopher Street. This experience has taught me to leave no stone unturned. THE BOARD OF DIRECTORS AND STAFF Cultivating professional relationships between members of the board of directors and staff members requires approximately 90 percent of my effort. A board can be both an asset and a hindrance. It is important to demonstrate to a board one's ability to run an agency effectively, win their respect, and gain their support in fulfilling a vision for the agency. There are always disagreements — almost always. When a milestone is reached it is important to know that one cannot sit back to breathe and boast; whatever one accomplishes is never enough in this industry. It is truly a thankless job we all must do, and I have learned to expect no acclaim and continue to move full speed ahead. It is important for board members to offer challenges and question decisions. It is also important for the collective to respect their own final decisions and work together to ensure the plan is implemented. As an executive director, one also serves as the one thin line between the board and staff— a place where one is pulled from both sides with constant tension. In hiring staff, I have found that loyalty is as important as an educational background and previous work experience. The problem is discovering those who will be loyal when the need arises. There are very few who will remain loyal to the bitter end, and to discover just one such individual who will remain in your corner is a milestone. It is important, therefore, to know that everyone loves you and the paycheck they receive. The existing staff at Harlem United is my pride and joy. It takes a certain quality to survive and work at Harlem United; one either has that quality or one does not. It has taken the entire four years of my service to

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Harlem United to build the staff to where it is today, and I respect, admire, and have total confidence in each employee on the payroll. Keeping the lines of communication open between staff and the executive office is important. Many have complained about the number of staff meetings at Harlem United, but I am confident that these meetings are instrumental in the success of Harlem United. There is a monthly staff meeting for all employees, biweekly meetings of assistant directors and directors, biweekly meetings of directors, and weekly meetings of senior managers. Staff turnover at the agency has decreased by 75 percent since my first year of service, and the ability for each staff member to have a say and be aware of all decisions is our secret. Managing staff is also a very emotional responsibility. It is nearly impossible not to feel responsible for the lives of those who work under your leadership. There was an individual who came to work for Harlem United during the days when the agency was still known as the Upper Room. Our work environment was horrendous, and we shared office space with rodents and roaches. Air conditioning was something one enjoyed on the subway ride home. This individual had true dedication to the agency and those we served and went well beyond what was expected from him as an employee. He entered the agency as an administrative assistant and eventually was promoted and led the agency through the construction of its new health facility. Everyone adored and respected this staff member, and he served as the answer-to-everything kind of employee. Just as midnight affected Cinderella, a small chain of events occurred within the ranks that caused the eventual termination of this employee. I share this story to demonstrate how the daily dealings of keeping staff in shape is the most difficult task as a director. A disagreement occurred between this staff member and a coworker. The coworker eventually resigned from the agency for numerous reasons. Several weeks later a letter arrived in the mail claiming that a representative from immigration authorities would be investigating the employment eligibility of Harlem United's esteemed employee. (The actual origin of this letter is most obvious.) I was in Atlanta at a conference when the letter arrived, and the letter was received by Harlem United's deputy executive director. Panic struck, board members were called, and accusations ere made claiming that Harlem United had an illegal alien. Suddenly the well-respected employee was treated like a deadly virus. Both board members and staff members of the agency deemed it necessary to terminate the employee immediately. I disagreed. The employee himself was living with HIV and an immediate termination would have adverse results for his well-being. I was accused of having knowledge of


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this individual's noncitizen status and the rumors went as far as to claim that a sexual relationship existed between the two of us. The same individuals who once enjoyed the benefits of such a loyal and intelligent employee were fighting for his defeat. Eventually I lost the battle, and the employee lost his job. This was, indeed, my most disappointing day as executive director for Harlem United. It was also a lesson well learned involving understanding the importance of loyalty and how the AIDS service industry, at times, can be more destructive than an opportunistic infection. Soon after overcoming the disappointment of losing a most valued employee, I was asked to resign from the Harlem Directors Group, an organization of which I am cofounder. As mentioned previously, it is difficult to balance politics with funding, and my removal from the board of the Harlem Directors Group is an excellent example of how it is not done. Soon after the agency that served as the community service provider (CSP) for Upper Manhattan was closed down, New York State Department of Health had solicited a request for proposals from organizations interested in assuming the responsibility and claiming the millions of dollars that came along with the obligation. The Harlem Directors Group applied for the funding as a collective and would serve as a parent organization for distributing the responsibilities and funds to organizations within the collective. The idea was a good one, and I had committed Harlem United's participation initially. This would at least force existing service providers to work together to meet the common goal of serving the HIV affected and infected of Harlem. A director from the funding agency, however, had contacted me as well as other members of the Harlem Directors Group to share her feelings regarding the appointment of the group as the new CSP. She had stressed that the possibility of the group receiving the money was very unlikely. The Harlem Directors Group would be required to spend a large portion of the funding to build infrastructure, whereas if the money were presented to an existing organization, it could be spent more efficiently on services to people with AIDS. I agreed with her reasoning and decided that Harlem United should also apply for the funding independently, in fear that an agency not located in Harlem would receive it. The director of the funding agency was wrong, and the Harlem Directors Group was appointed as the new CSP. I was asked to resign from the group and Harlem United was relieved of its commitment to work with other service providers as the CSP. I regret the decision to apply for funding, not because it was wrong, but because AIDS service organizations in Harlem are back to square one and not working together as a team.

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SPIRITUAL PRINCIPLES There are seven principles underlying the traditions of Kwanzaa. I believe these principles, along with an endless supply of ice cream, can help anyone keep a sound mind as we strive to remain professionally and spiritually connected in our service to people living with HIV and AIDS. They are: Umoja (unity) — to strive for and maintain unity in the family, community, nation, and race; Kujichagulia (self-determination) — to define ourselves, name ourselves, create for ourselves, and speak for ourselves instead of being defined, named, created for, and spoken for by others; Ujima (collective work and responsibility) — to build and maintain our community together and make our sisters' and brothers' problems our problems and to solve them together; Ujamaa (cooperative economics) — to build and maintain our own stores, shops, and other businesses and to profit from them together; Nia (purpose) — to make our collective vocation the building and developing of our community in order to restore our people to their traditional greatness; Kuumba (creativity) — to do always as much as we can, in the way we can, in order to leave our community more beautiful and beneficial than it was when we inherited it; and Imani (faith) — to believe with all our heart in our people, our parents, our teachers, our leaders, and the righteousness and victory of our struggle. NOTES Editor's note: Willis Green, Jr. completed this chapter in the final weeks of his life. He had a fierce determination to complete this chapter as part of his legacy. We thank him for this gift. 1. The impact of homophobia and other social biases on AIDS, a special report by the public media center. (1996, February). AIDS Reference Guide, p. 6. 2. Ibid.

5 When Silence Equals Death: Advocacy and Policy Perspectives in AIDS and African Americans Larry M. Gant

UNDERLYING ISSUES IN HIV/AIDS-RELATED POLICY AND ADVOCACY IN AFRICAN-AMERICAN COMMUNITIES With the exception of the Kemron controversy that occurred between 1990 and 1994 (discussed elsewhere in this chapter), the national policy and advocacy response to HIV/AIDS from the African-American community has been devastatingly silent. No coherent response or action agenda has been presented by any of the traditional forums for national African-American leadership. The impact of HIV/AIDS has not been publicly addressed by African-American political leadership. This is all the more horrifying given the unremitting, double-digit increases in the number of new cases of HIV infection and current cases of AIDS within the African-American community. Although there is extensive activity among local African-American communities, the efforts are far more programmatic than policy-oriented. This extensive local response is heartening; however, the increasing incidence and prevalence of HIV/AIDS among African Americans is a clear reflection of the limitations of solely local, nonpolitical initiatives. This chapter briefly discusses the context, impact, and implications of the current nonresponse in the areas of HIV/AIDS-related policy and advocacy within African-American communities and suggests specific

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actions to stop the silence — hopefully, before it becomes impossible to do so. AIDS AND TRADITIONAL NATIONAL AFRICAN-AMERICAN POLICY AND ADVOCACY VOICES: THE SOUND OF ONE HAND CLAPPING Since 1981, nearly 200,000 African-American men, women, and children have died from AIDS-related complications. These deaths seem a high price to pay for the silence of national discussion, debate, and political actions within African-American communities. Apparently, however, it has worked. Thanks, in part, to the unwillingness of national AfricanAmerican leadership to forthrightly address the issues of HIV/AIDS treatment and prevention in African-American communities, within two decades African Americans will comprise more than 50 percent of all cases of AIDS in the United States. How many more African Americans need to die before the traditional policy and advocacy voices of AfricanAmerican communities decide it is time to declare in clear, unambiguous terms, that African Americans will not go quietly into the night? Since the inception of the pandemic in 1981, the traditional nationwide policy and advocacy voices of the African-American community — churches and social, professional, and political organizations — have failed to provide coherent vision or leadership in responding to HIV/AIDS. Periodic declarations and celebrations during World AIDS Day notwithstanding, AIDS as an agenda issue has been ignored to the point of embarrassment and outrage by African Americans working in the field as well as by the thousands of African Americans living with — and dying of—AIDS. Political Organizations We conducted a 15-year review and search for policy statements and action guidelines elicited by the two major black policy centers in the United States: the Congressional Black Caucus and the Joint Center for Political Studies. Although final results are still under review as of December 1997, our preliminary results are unfortunately very clear. Since 1981, neither the Congressional Black Caucus nor the Joint Center for Political Studies has released major policy statements or position papers on HIV/AIDS within African-American communities. Our correspondence and telephone calls requesting clarification and understanding remain unanswered. Why do they appear not to care?

Advocacy and Policy Perspectives

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African-American Social Organizations, Fraternities, and Sororities Within these organizations, our research suggests extensive local activity within AIDS epicenters around the United States. As we will discuss later, the current hope for HIV/AIDS responses lies at the local level of activity. Through four telephone calls to national offices and reviews of membership publications (for example, newsletters), however, we were unable to locate any national position papers on HIV/AIDS from a long list of more than 200 African-American associations (including Jack and Jill, 100 Black Men, Black Panhellenic Council, and so forth). Traditional African-American Organizations This group of organizations is represented by such historical presences as the National Urban League, Southern Christian Leadership Conference, and the National Association for the Advancement of Colored People. After nearly 100 years, these organizations are unquestionably among the most widely known, most influential, and powerful of African-American organizations, rivaled and surpassed perhaps only by African-American religious communities. Our review of national policy statements and position papers between 1981 and 1996, however, reveals no major positions or sustained comprehensive programs by these three major organizations. In fact, wonderful prevention initiatives were conducted by both the Urban League and the Southern Christian Leadership Conference during the late 1980s and early 1990s. However, we were unable to locate any major, national position papers or conference proceedings addressing the problems of HIV/AIDS within African-American organizations. Furthermore, internal organizational crises impacting all three organizations do not inspire hope that coherent responses will emerge anytime before the end of the twentieth century. Perhaps it is time to acknowledge the limits of the traditional national organizations. It simply may be that the traditional African-American organizations can play many essential and important roles, but policy and advocacy leadership in the AIDS pandemic may be beyond their individual or collective organizational capability. Religious Communities In many ways, the African-American religious community response to HIV/AIDS is the most intriguing. In our review of position papers by denominational divisions, we were unable to locate any major ecumenical

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presentations, liturgical responses, or denominational statements regarding HIV/AIDS within African-American religious communities, with the notable exception of the Nation of Islam (NOI). (Because most of NOFs responses have focused largely on the access and administration of Kemron, we will discuss NOFs impact more fully later.) We have documented literally hundreds of local church-related programs and activities, however. A handful of individual churches, such as Glide Memorial Church, have demonstrated considerable local and regional leadership in AIDSrelated advocacy for services and people living with HIV/AIDS. In many ways, this is an all too perfect example of the ambivalent response to HIV/AIDS by African-American leadership: a conspiracy of national silence but a tradition of quiet service. The all too frequent review of the dramatically increasing numbers of AIDS-related deaths, people living with AIDS, and people infected with HIV suggests, however, that this well-meaning response is simply inadequate. Radical and Nationalist African-American Professional Organizations Historically, there has been a handful of so-called radical organizations that have embraced politically and socially sensitive causes and issues. Such organizations as the All Afrikan-American Peoples' Revolutionary Party, the National Association of Black Social Workers, and the Association of Black Psychologists are appropriate examples of African-American organizations reflecting an Afrocentric, worldcentric, politically dynamic perspective. These organizations, however, have been largely silent on the issue of HIV/AIDS. It is useful and important to note that a few of these organizations have recently begun to struggle toward the generation of a national organizational position regarding HIV/AIDS in African-American communities. For instance, the 1998 national meeting of the National Association for Black Social Workers convened its first major session ever on HIV/AIDS in African-American communities. Those of us who have been working with HIV/AIDS say "Welcome"! We need to ask as well, "What took you so long?" WHERE THE ACTION IS: AFRICAN-AMERICAN RESPONSES AT THE LOCAL LEVEL In the absence of national policy debate, discussion, and vision among African-American political and social leadership, we were gratified to find extensive activity at the local level in both treatment and prevention


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realms. The total number of initiatives remains unknown and, frankly, was overwhelming. We have opted to provide general observations, patterns, and trends of some 500 programs we identified and reviewed. Here, we found numerous examples of African-American individual and community service activities and programs. Here, we found the real action. In many ways, we were gratified to find that local groups of people felt the need to do something, anything, and not wait for national leadership or attention to verify what they already knew. Organizations that formed policy and generated policy analysis were extremely rare; far more common were prevention initiatives, compassionate care responses for people living with AIDS, and advocacy for appropriate and responsive service delivery. We found many grass-roots programs developing into collaboratives — securing and leveraging resources to continue organizational missions, services, and programs. Generally, we found that grass-roots programs that were able to generate and sustain organizational capacity, secure grants and contracts, provide quality service, monitor and track outcomes, and involve clients in organizational planning and development were likely to have more varied and extensive programs and services. We also found a number of people and organizations rapidly depleting personal and organizational resources. Small, grass-roots organizations were increasingly at risk of dissolution, lacking fiduciary capability, organizational capacity, and resources to secure funding and program sustainability. We also observed a troubling frequency of burned out and departing staff, utterly fatigued after a decade or more of sustained activity. We were pleased to see new and younger faces willing to take up the struggle, but we are not sure that the numbers of staff leaving are balanced by new entrants. Still, too many community programs are unaware of each others' existence — within cities, within states, and across state lines. National conferences, such as the National Leadership Conference and the AIDS and Social Work Conference, provide all too infrequent gathering places for African Americans working with HIV/AIDS. Other wonderful conferences, such as the Conference on AIDS and the Black Family, are offered once, then gone forever, with no record of conference proceedings or activities. Within prevention programs we were also pleased but concerned to hear of people's dissatisfactions with prevention strategies that were seen as irrelevant to African-American populations or outdated. There were concerns that powerful and demonstrably effective interventions, such as those pioneered by John and Loretta Sweet Jemmott, needed to be updated for the realities of the 1990s. There is a clear call for new and

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creative models of prevention and care, but few new models or ideas are emerging. Finally, we reiterate the omission of public policy analysis at the local level. The skills and experiences of these local workers are directed toward service activities. We wonder how much more effective and synergistic services could be if they were framed within a public policy context. FUTURE POLICY AND ADVOCACY STRATEGIES We suggest that three critical barriers prevent intelligent articulation and planning at the national level. We will leave the discussion of what we believe are the major barriers to all responses to HIV/AIDS and the African-American community — homophobia and fear of indelible stigmatization — to others, and proceed to outline three specific strategies that may be useful in developing effective policy statements and advocacy leadership at the national and local levels: the paralysis of analysis, conspiracy theories, and the need for more research. The Paralysis of Analysis Many of Robert Hill's writings (1972, 1977,1993) refer to the common phenomenon of immobilization because of data. In many ways, the lack of African-American response is reminiscent of groups of people experiencing post-traumatic stress syndrome. Although not pursuing that metaphor to extremes, it is possible that the welter of grim news regarding new infections and the increasing black, female face of the current and future AIDS pandemic in the United States and worldwide simply evokes overwhelming anxiety. Every population group comprising African Americans — young, old, male, female, gay, lesbian, straight, employed, unemployed, and so on — appears to register steady and dramatic increase in numbers. Denying the onslaught may be one desperate way of facilitating day-to-day life and activity; however, this denial, this paralysis, leads only to more infection, suffering, and death among too many African Americans. Conspiracy Theories Samuel Duh's remarkable but largely overlooked published work on AIDS in Black Communities raises and answers questions about the utility of conspiracy theories about HIV. There are a number of articles and


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books claiming to provide compelling evidence of the human creation of HIV and the selective infection of identified populations (typically blacks and gay white males) by an elite cadre of individuals. Duh's questions, which we paraphrase, are as follows: Let's say there is a conspiracy. What are the implications for praxis and struggle? How does knowing this change anything? If the knowledge that a conspiracy did occur could be verified, would that galvanize African-American outcry and public response? Would this stop the increase in infection by unprotected sex and intravenous drug use? Would this engender change? We recall the time in the late 1980s when many of these books and ideas were presented and discussed. A review of infection rates and mortality indicators reflects a steady increase. Despite the macabre and morbid comfort some might find in a declaration of conspiracy, it is not likely to lead to radical change. We think the search for conspiracy theories is a waste of effort and intellect and urge that such efforts be consigned to the nearest scrap heap. There are sufficient tragedies and traumas to be analyzed with real evidence. Finally, if people persist in their pursuit of conspiracy, we provide a compellingly real apparent conspiracy that cries out for legitimate discussion and community response — the conduct of unethical randomized clinical trials of AZT on mothers and infants in Africa. The Need for More Research This perspective begs the question of how much more research is needed before decisions to generate HIV/AIDS policy and advocacy for African Americans. We think this is a question that has no answer. Let us consider what is known and what needs, perhaps, to be widely known. The pathogenesis of HIV and AIDS is generally known. The routes of infection (unprotected sex with an HIV-infected partner, injection drug use, and maternal-fetal transmission) are well known. The prevention of HIV is well known (the practice of safer sex and drug use harm reduction strategies including abstinence from risky sex and drug behaviors). The need to fund and continue to fund prevention and care programs is documented. In short, do we not have sufficient research on the critical few indicators? Do we not have sufficient research to substantiate action and analysis? Other communities and religious organizations outside of AfricanAmerican communities have developed policies and actions with far less

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research. Exactly why does the African-American community require more research? FOUR EFFECTIVE STRATEGIES FOR MOVING BEYOND THE STATUS QUO Reality Bites: Using the Mark Smith Protocols In early spring 1997, Mark Smith, M.D., M.B.A., and CEO of the California Health Care Corporation addressed the annual meeting of the National AIDS Fund in Albuquerque, New Mexico. During his presentation, some pragmatic strategies for response to HIV/AIDS were presented (Smith, 1997). We think they have particular relevance for the AfricanAmerican community and summarize them here. How Do You Know That? Rather than cries for more research, how about carefully examining the data and information available? Smith suggests that people not beat the data to death and make an informed decision to act. More than three decades earlier, Binder exhorted people to "accept the usefulness of particular data even when the level of analysis available for them is markedly below that available for other data in the empirical area" (Binder, 1964, p. 294). Follow the Money The uncomfortable reality of health-related social policy is that much of the policy is structured around income, revenue, and employment. At the same time, AIDS is a disease; a cause; a labor of love; and a source of organizational identity, strength, and income. Issues of organization, power, and substance are at stake, therefore, policy should consider what is both good and useful for people living with AIDS, people at risk for HIV infection, and the apparatus that serves them. Focusing AIDS Policy and Advocacy The three domain areas for the focus of policy and advocacy in the fight against AIDS are treatment and care, prevention, and a supportive social environment. Policy can call for the care of people living with AIDS, the means and methods to prevent new cases of HIV/AIDS, and create a social environment in which this is possible.


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Treatment and Care By and large, new treatments for HIV/AIDS are effective. They are not perfect (for example, combination therapy is effective in only 70 percent of cases), but this is good news. The evidence for the effectiveness of AZT and reduction of HIV infection in newborns is incredible. Administration of AZT beginning the second trimester through the first month of life has resulted in nearly an eightfold reduction in perinatal HIV infection. Additionally, the overwhelming majority of pregnant women with HIV elect AZT prophylaxis, making efforts to mandate AZT for pregnant women with HIV/AIDS moot. Obviously, there are challenges to treatment. First, treatment is not as effective as it could be, and the treatment is expensive. Combination therapy averages $15,000 annually. For many people living with AIDS, some form of funding is usually available to cover some portion of costs. Compared to the costs of care for other medical problems (for example, kidney disease), the costs are comparable and, in the jargon of managed care, are manageably expensive. The Kemron debate must also be resolved. In a scathing attack on the African-American response to HIV/AIDS, Elinor Burkett (1995), noted that "Gay men have had stellar moments of courage that forced the nation to pay attention to an epidemic it desperately wanted to ignore — and wound up with that attention and a new level of respect for their community. Black America wound up with Kemron" (p. 190). Interestingly, most of the information concerning policy and AfricanAmerican communities has focused around the Kemron controversy between 1990 and 1994. In retrospect, it appears that much political capital was spent in what was, and is, an ultimately futile battle. We summarize here the realities of Kemron: Kemron (low-dose alpha interferon) was not, in fact, an African creation but came from Japan (the alpha interferon being used was manufactured by Hayashibara Biochemical Laboratories of Japan) and only distributed through Innovative Therapeutics, Ltd., a Kenyan distributor of the compound. Costs for monthly supplies of Immunix (an oral suspension of alpha interferon manufactured by an Australian pharmaceutical corporation and sometimes touted as superior to the powdered Kemron brand of alpha interferon) ranged from $50 (Dallas, Texas buyers' club) to $250 (Abundant Life Clinic, Washington, D.C.).

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In nonrandom clinical studies, alpha interferon users showed temporary improvement in some physical symptoms. In randomized clinical trials conducted in Kampala, Uganda, from 1991 to 1993, the results from 560 patients revealed no differences between treatment and placebo groups in HIV seropositive status, CD4 counts or body weight, and survival rates and disease progression. Davey Koech and A. O. Obel, the Kenyan authors of the original 1990 study, have, to date, been unable to replicate the results of their study. The promises and hopes raised by the Kemron controversy evaporate in the light of this information. The African origin of Kemron is clearly false and evidence clearly indicates the drug is ineffective. Kemron does not work. African-American policy and policy makers should consign the controversy to history and move on. The debate is over (Burkett, 1995, pp. 399-^00). Prevention There is a clear and demonstrable market for prevention science, and a clear need for prevention science that addresses the particular concerns of African-American communities. Associations, such as the American Psychological Association and American Medical Association, are beginning to synthesize this information. African-American counterpart organizations, such as the Association of Black Psychologists and the National Medical Association, could begin to synthesize analogous information for African-American communities. One challenge is to directly address the antiscientific notion that only people with frontline experience have accurate and true knowledge. Just because someone was born and reared "in the hood" does not automatically translate into the ability to view and know things from an empirical perspective. A Supportive Social Environment Mindy and Robert Fullilove and their colleagues are passionately articulate in their calls for the creation of a supportive social environment for addressing HIV/AIDS in African-American communities. Invariably, policies will need to address the importance and necessity of countering expressions of homophobia and AIDS-related stigma and discrimination both within and outside African-American communities. We can think of no better way to begin this than by reading and reviewing the analysis and suggestions made in Harlan Dalton's classic "AIDS in Blackface."


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Beyond this, perhaps, it is time to talk plainly about the uncomfortable issues of homophobia, sexism, and classism that impact African-American communities. How much of the policy silence within the AfricanAmerican communities reflects leadership discomfort with AfricanAmerican gays, lesbians, and bisexuals? Given that the greatest increases in new HIV infections and AIDS cases occur among poor, injection drug users and women, how much of the policy silence reflects class bias and elitism? How much of the policy silence reflects an underlying and unadmitted sexism toward and devaluation of African-American women? Further, policy makers would do well to revisit the Great Reform Movement of Public Health. The advocacy for affordable housing, accessible health care, integration of preventive health care and spirituality, due diligence of managed care, and basic educational reform are traditional themes endorsed by an extensive range of African-American organizations, even if they are not explicitly involved in HIV/AIDS prevention and treatment. Advocating such initiatives also reflects sound basic public health practice and good basic HIV/AIDS prevention and treatment. The three organizational challenge arenas for the focus of policy and advocacy in the fight against AIDS are managed care, categorical funding of care, and prevention. Managed Care Despite the bias against managed care, the reality is that capitation programs will characterize many types of service programs including social and medical services. Policy and advocacy can focus on the need to create and implement due diligence and to monitor protocols for managed care systems. Categorical Funding for Care Categorical dollars for disease treatment and health care is simply dysfunctional. In Oakland, California, alone, more than 200 funding sources have political structures. If total decategorization is not possible, collapsing some categories may be feasible for care provision and should be explored. Policies might call for the exploration of taking dollars allocated to indigent care (under AIDS drug assistance programs, Medicaid, and Ryan White CARE Act) and using them simply to purchase health care for such individuals. Prevention Elsewhere we have already explored the possibility of packaging, marketing, and distributing effective prevention strategies. These strategies

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for distribution should include multimedia presentations as well. For instance, the American Psychological Association has already initiated discussion with television producers regarding the presentation of HIV/AIDS topics on commercial television stations. What prevents the Black Association of Psychologists from initiating discussion with Black Entertainment Television? Focusing AIDS Policy and Advocacy beyond the African-American Communities From African American to the African Diaspora The vast possibilities for linking the African-American HIV/AIDS struggle with the struggles of people of African descent worldwide have been virtually ignored. According to the 1997 United Nations' HIV/AIDS: A Global Report and Tarantolla, Mann, and Netter's exhaustive AIDS in the World //, among African countries (as well as other people of color in Southeast Asia and South America): in 1997 alone, there were 2.3 million AIDS-related deaths, a 50 percent increase over 1996; in 1997 30 million people worldwide were living with AIDS — 70 percent of those are people of African descent; daily, worldwide there are 16,000 new HIV infections — 80 percent of those occur in Africa; currently, 1 million children worldwide are living with HIV/AIDS; AIDS orphans number 9 million, with a majority of these being of African descent; more than 90 percent of new AIDS cases emerge from Southeast Asia, Africa, and South America. The Slaughter of African Children in the Name of Science For those who simply assume that African and African-American national policy response requires a visible target, one need look no further than the incredible and real conduct of nine unethical research experiments designed to determine the efficacy of AZT reduction of perinatal HIV transmission funded by either the National Institutes of Health or the Centers for Disease Control and Prevention. Even though a randomized controlled trial funded by the National Institutes of Health (the 076 Protocol) demonstrated in 1994 that AZT reduced perinatal transmission of


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HIV by 66 percent (a finding so dramatic that the study was stopped prior to its conclusion), some or all of the women in U.S.-funded studies in the Ivory Coast, Uganda, Tanzania, South Africa, Ethiopia, Burkina Faso, Malawi, Zimbabwe, and Kenya as well as Thailand and the Dominican Republic are not receiving effective prophylaxis. This placed their infants at risk for HIV infection. Instead, these women are being offered either placebos or interventions that have not been proven effective (for example, vaginal washing). A total of nearly 1,000 infants, therefore, will be expected to die unnecessarily in these experiments, some of which were underway as of April 1997. These preventable deaths can simply be averted if women in the studies are offered some type of AZT regimen or any other regimen that proves similarly effective. This is not to oppose randomized clinical trials of different types of arguably effective interventions. What should be opposed are clinical trials that deny women access to already proven effective interventions, such as AZT. We frankly wonder where the outcry about this issue is in the AfricanAmerican community. Is this not sufficiently horrid? Is this not enough to compel action and advocacy? Finally, to the conspiracy buffs: will this conspiracy suffice? Endorsing the World Declaration of Human Rights December 11, 1997, marked the fiftieth anniversary of the World Declaration of Human Rights. Drafted in 1947 by Canadian attorney John Humphrey, the declaration is simply a declaration of each person's right to basic needs (food, shelter, and clothing), to health and education services access, and to live without fear of discrimination or hatred. The declaration has been ratified by nearly all developing countries and nearly every industrialized country with one glaring exception: the United States. As Malcolm X struggled to move the African-American struggle from the local arena of civil rights to the world arena of human rights, could African-American leadership not assume this simple mantle and responsibility? CONCLUSIONS Depending on others to develop and implement both treatment and prevention strategies is ultimately disempowering for African Americans and invokes slavery and ownership metaphors, unfortunately far too prevalent among far too many African Americans (and that would be admitted by far too few). Unless action is swiftly taken, however, begging outsiders to help those who will not help themselves will be the default strategy.

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National African-American leadership should be held accountable by local African-American communities and voters for actions and inactions regarding national policy toward HIV/AIDS in African-American communities. Simultaneously, local African-American communities must relearn and implement again the social political strategies historically used by African-American communities. In particular, this latter action — interactive social action at the local level — is critical for two reasons. First, national policies serve as guides, mandates, and inspiration, but only local implementation enables national policies to be realized and actualized. Second, African-American communities may simply have to move past the current paralysis that immobilizes national African-American leadership and threatens to persist in the future. This certainly would not be the first time community constituencies outwitted national leadership. Most of all, African-American communities must simply act — with intelligence, political sophistication, and urgency. Already, death rates because of AIDS and other causes exceed birth rates in the African-American community. If the current reality of national silence and local, disconnected initiatives continue, African Americans will meet and exceed the projections of representing more than 50 percent of HIV/AIDS cases in the United States. Death rates will continue to increase; the AfricanAmerican community will become smaller, younger, and less resourced by the end of the twenty-first century. In a last act of empowerment (selfinflicted genocide by silence) the destruction of African Americans will be piloted on a steady and unwavering course toward completion within two centuries. African-American leadership will have finally, ultimately wrought the most macabre of miracles. REFERENCES Albert, J., & Stryker, J. (Eds.). (1993). The social impact of AIDS in the United States. Washington, DC: National Academy Press. Amo, P., & Frieden, K. (1992). Against the odds: The story of AIDS drug development, politics and profits. New York: HarperCollins. Blake, D. (1993). AIDS: Epidemiology and the international response. Tropical Medicine and Parsitology, 44, 130-134. Boyd-Franklin, N., Steiner, G., & Boland, M. (Eds.). (1995). Children, families and HIV/AIDS. New York: Guilford Press. Burkett, E. (1995). The gravest show on earth: America in the age of AIDS. Boston, MA: Houghton Mifflin. Cameron, T. (1994). Children orphaned by AIDS: Providing homes for a most vulnerable population. AIDS and Public Policy Journal, 9, 29-35.


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Centers for Disease Control and Prevention. (1997a). HIV prevention case management: Guidance. Atlanta, GA: Centers for Disease Control and Prevention. Centers for Disease Control and Prevention. (1997b). HIV prevention case management: Literature review and current practice. Atlanta, GA: Centers for Disease Control and Prevention. Centers for Disease Control and Prevention. (1995). Facts about HIV type 2. Atlanta, GA: Centers for Disease Control and Prevention. Centers for Disease Control and Prevention. (1993). HIV/AIDS surveillance report. Atlanta, GA: Centers for Disease Control and Prevention. City of Detroit Health Department. (1993). Detroit eligible metropolitan area community needs assessment. Detroit, MI: City of Detroit. Cohen, F., & Nehring, W. (1994). Foster care of HIV-positive children in the United States. Public Health Reports, 109, 60-68. Cose, E. (1993, April 23). National affairs: Larger than life. Newsweek, pp. 30-31. Dabis, R, Chene, G., Salomon, R., & Msellati, P. (1993). Estimating the rate of mother-to-child transmission of HIV. AIDS, 7, 279-280. Dalton, H. L. (1989). AIDS in blackface. Daedalus, 118(3), 205-227. Dane, B., & Levine, C. (1994). AIDS and the new orphans: Coping with death. Westport, CT: Auburn House. Duesberg, P. (1996). Inventing the AIDS virus. Washington, DC: Regnery Publishing. Duh, S. V. (1991). Blacks and AIDS: Causes and Origins. Newbury Park, CA: Sage. Fan, H., Conner, R., & Villarreal, L. (1994). The biology of AIDS, 3rd ed. Boston, MA: Jones & Bartlett. Fullilove, M. T., Weinstein, M., Fullilove, R., Crayton, E. J., Jr., Goodjoin, R. B., Bowser, B., & Gross, S. (1990). Race/gender issues in the sexual transmission of AIDS. AIDS Clinical Review, pp. 25-62. Fumento, M. (1990). The myth of heterosexual AIDS. New York: Basic Books. Gallo, R. C. (1991). Virus-hunting — AIDS, cancer and the human retrovirus: A story of scientific discovery. New York: Basic Books. Gant, L. M. (1995). HIV/AIDS: Men. In Encyclopedia of Social Work, 19th ed. (pp. 1306-1314). Washington, DC: NASW Press. Gostin, L. O. (1990a). The AIDS litigation project: A national review of court and human rights commission decisions. Part I: The social impact of AIDS. Journal of American Medical Association, 263, 1961-1970. Gostin, L. O. (1990b). The AIDS litigation project. Part II: Discrimination. Journal of the American Medical Association, 263, 2086-2093. Gould, P. (1993). The slow plague: A geography of the AIDS pandemic. Cambridge, MA: Blackwell. Greeley, A. (1991). Religion and attitudes toward AIDS policy. Chicago, IL: National Opinion Research Center.

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Hill, R. B. (1977). Informal adoption among African-American families. Washington, DC: National Urban League. Hill, R. B. (1972). The strengths of the black family. New York: Emerson Hall. Hill, R. B., & Billingsley, A. (1993). Research on the African-American family: A holistic perspective. Westport, CT: Auburn House. Hombs, M. (1992). The AIDS crisis in America: A reference handbook. Santa Barbara, CA: ABC-CLIO. Horrigan, A. (1988). AIDS and the Catholic church. In R. Berk (Ed.), The social impact of AIDS in the United States. Cambridge, MA: Abt Books. Jemmott, L., & Jemmott, J., III. (1992). Increasing condom-use intentions among sexually active black adolescent women. Nursing Research, 41(5), 273-279. Jemmott, J., Ill, Jemmott, L., & Fong, J. (1992). Reductions in HIV risk-associated sexual behaviors among black male adolescents: Effects of an AIDS prevention intervention. American Journal of Public Health, 82(3), 372-377. Jemmott, J., Ill, Jemmott, L., Spears, H., Hewitt, N., & Cruz-Collins, M. (1992). Self-efficacy, hedonistic expectancies, and condom use intentions among inner-city black adolescent women: A social cognitive approach to HIV risk behavior. Journal of Adolescent Health, 13, 512-519. Kirp, D., & Bayer, R. (Eds.). (1992). AIDS in the industrialized democracies: Passions, politics, and policies. New Brunswick, NJ: Rutgers University Press. Kwitny, J. (1992). Acceptable risk. New York: Poseidon Press. Lambert, B. (1989, June 10). Black clergy to address AIDS threat to race. New York Times, pp. B29, B32. Lifson, A. R. (1992). Transmission of the human immunodeficiency virus. In V. T. Devita, S. Hellman, & S . A. Rosenberg (Eds.), The global impact of AIDS (pp. 183-190). New York: Allan R. Liss. Lloyd, G. (1995). HIV/AIDS. In Encyclopedia of Social Work, 19th ed. (pp. 1257-1283). Washington, DC: NASW Press. Lloyd, G. (1990). AIDS and HIV: The syndrome and the virus. In L. Ginsberg (Ed.), Encyclopedia of Social Work, 18th ed., 1990 suppl. (pp. 12-50). Silver Spring, MD: NASW Press. Loiacano, D. (1989). Gay identity issues among black Americans: Racism, homophobia and the need for validation. Journal of Counseling and Development, 68, 21-25. Lynch, V., Lloyd, G., & Fimbres, M. (1993). The changing face of AIDS: Implications for social work practice. Westport, CT: Auburn House. Mann, J. (1994, March 31). AIDS, health and human rights: The future of public health. Presentation at the University of Michigan, School of Public Health, Ann Arbor. Mann, J., Tarantola, D.J.M., & Netter, T. W. (Eds.). (1992). AIDS in the world:


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The global AIDS policy coalition. Cambridge, MA: Harvard University Press. Marin, B. V. (1997). Analysis of AIDS prevention among African-Americans and Latinos in the United States. In M. Gluck and E. Rosenthal (Eds.), The Office of Technology Assessement (OTA) report: The effectiveness of AIDS prevention efforts. Washington, DC: American Psychological Association. Miller, H., Turner, C , & Moses, L. (1990). AIDS: The second decade. Washington, DC: National Academy Press. Mitchell, A. (1990, November). AIDS: We are not immune. Emerge, 1, 30-44. National Association of People with AIDS. (1992). HIV in America: A profile of the challenges facing Americans living with HIV. Washington, DC: National Association of People with AIDS. National Research Council. (1993). The social impact of AIDS in the United States. Washington, DC: National Academy Press. Neighbors, H., Elliott, K., & Gant, L. (1990). Self-help and black Americans: A strategy for empowerment. In T. Powell (Ed.), Working with self-help (pp. 189-217). Silver Spring, MD: NASW Press. Newell, M. L., & Peckham, C. (1993). Risk factors for vertical transmission of HIV-1 and early markers of HIV-1 infection in children. AIDS 92/93, S91S98. Newmeyer, J. (1994, May 17). HIV and drug users: prevention on the cheap in San Francisco. Presentation at Wayne State University, Detroit. Patton, C. (1994). Last served?: Gendering the HIV pandemic. Bristol, PA: Taylor and Francis. Perrow, C , & Guillen, M. (1990). The AIDS disaster: The failure of organizations in New York and the nation. New Haven, CT: Yale University Press. Peterson, K. J. (1995). HIV/AIDS: Women. In Encyclopedia of Social Work, 19th ed. (pp. 1325-1330). Washington, DC: NASW Press. Reamer, F. (1995). Social work values and ethics. New York: Columbia University Press. Reamer, F. (Ed.). (1991). AIDS and ethics. New York: Columbia University Press. Rothstein, M. A. (1989). Medical screening: AIDS rights, and health care costs. National Forum, 99, 7-10. Ryan White CARE Act of 1990. PL. 101-381, 104 Stat. 576. Sepulveda, J., Fineberg, H., & Mann, J. (Eds.). (1992). AIDS prevention through education: A world view. New York: Oxford University Press. Smith, Mark (1997, March 25). AIDS care and treatment in the 1990s. Keynote speech, National AIDS Fund Partnership Meeting. Albuquerque. Special Report: AIDS. (1996). Science, 272, 1876-1890. Squire, C. (Ed.). (1993). Women and AIDS: Psychological perspectives. Newbury Park, CA: Sage. Stine, G. L. (1996). Acquired immune deficiency syndrome: Biological, medical, social and legal issues, 2d ed. Englewood Cliffs, NJ: Prentice-Hall.

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6 Community-Based Evaluation of HIV/AIDS Services for African Americans Darrell P. Wheeler

Staff meeting at a large CBO to program coordinators heading HIV/AIDS services to women: (Director) "It's once again time to submit our annual report and re-apply for funding. The funding cycle is coming to a close and there's a competitive bidding process this time. If we don't get this grant renewed we could lose a significant portion of our funding. Now let's get this process underway. Are there any questions? (Silence. A question, then a response). What do you mean where do we begin? Just tell our story. What have we been doing all year? We know our services for these families work so let's just get the report and proposal done." This scenario represents an oversimplified situation that has been repeated many times by agency staff. Marked by time constraints, dwindling resources, limited staff, increasing client case loads and complex interagency and governmental affiliations, agencies providing HIV/AIDS services have increasingly complex demands placed on them. The tasks associated with running an AIDS services organization or community-based organization providing HIV/AIDS services often seem antithetical to expending resources on program evaluation — until it is absolutely necessary. Over the past decade we have seen HIV and AIDS flourish in such dramatic ways that many agencies now have committed resources, if not entire programs, to providing some aspect of service related to the

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epidemic and those it has or could impact. As the AIDS epidemic has moved into nearly every imaginable health, human, and social service arena, service providers have had to respond to the growing needs of diverse constituents. In some instances, the need to respond rapidly has overshadowed the need to develop systematic plans for evaluation of services. In fact, for many agencies, as the above scenario highlighted, the evaluation of one's program functioning is often dictated by the need to respond to funding or potential funding and regulatory bodies. This external pressure can create a sense that evaluation is something done for someone or something extraneous to the business of serving the target population. Issues of accountability, dwindling resources, and more agencies competing for these scarce resources will require agencies to document in no uncertain terms the rationale for and the benefits of such services. This growing competition means that agencies will have to become expert in documenting as well as delivering their services. In this chapter the author provides an overview of key issues of evaluation with an emphasis on their utility for community-based HIV/AIDS services targeting African-American families. This overview is followed by a discussion of the application of evaluation techniques in communitybased practice. Case examples are used to underscore applicability and utility. Use of this information will facilitate at least three purposes: to provide a program management and development tool, to strengthen accountability relating to the services provided, and to reduce the likelihood that programs are managed in a crisis oriented manner. These are, indeed, ambitious goals. This chapter is not intended to create expert evaluators but rather to raise issues that providers will have to consider as they seek to remain competitive in a tightening HIV/AIDS market. Some readers will find this information supports their own evaluation efforts, while others will find useful strategies for moving their evaluation processes along. Still others will find this information useful in their negotiations with outside evaluators, increasing their awareness of evaluation issues that can serve as stumbling blocks in the agency. A very real and personal goal in writing this chapter is the author's desire to enhance the capacity of community-based agencies to engage in self-determined and purposive evaluation. This cannot be accomplished without attention to the nuts and bolts of both evaluation methods and organizational needs. In seeking this optimistic goal, the author does not want to underemphasize the many complex and detailed elements involved in program and research evaluation that go beyond the scope of the present work. Numerous authors have written on these complexities and entire curricula have been constructed to advance training in this area.

Community-Based Evaluation

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The goal here, at the risk of being redundant, is that upon completing this chapter, social work professionals, specifically, and HIV/AIDS practitioners, in general, will have a renewed faith, through skills acquisition, in their capacity to design, implement, and utilize evaluation strategies with and on behalf of African-American and black families impacted by HIV and AIDS. MONITORING, EVALUATION, AND RESEARCH: THEY ARE NOT DIRTY WORDS Tracking services, promoting programs, refining services, and developing a greater sense of exactly what a program accomplishes are major components of program management and administration. Most providers, from community outreach workers to executive directors, employ some version of self-evaluation on a daily basis. Distinguishing between the needs for developing and collecting the information is a critical step in determining what type of assessment should be conducted. When the goal is to track or count, such as resources and services, a monitoring or tracking mechanism may be appropriate. Here, a tally or enumeration of the items or issues may be all that is needed, for example, knowing how many condoms or brochures were distributed last month or how many telephone hotline calls were received. At another level, the questions may be What are the mechanisms of our services and What impact do they have. In this instance a question calls us to evaluate some service or program aspect. An example of this could be our need to know the precise mechanism used to conduct outreach and whether the outreach is having an impact on our target population. Finally, there are times when we need to generate new information or test assumptions about things we believe are occurring. We seek to generate new knowledge about an unexplored or poorly explored area; we want to research an area. Each of these strategies is useful in service delivery settings. Knowing what we want to accomplish when we have gathered our information is the first step in establishing the mechanisms for collecting the information. There are times when external forces will dictate what we will need to do. Nonetheless, knowing what the intended outcome is to be is still a requisite step. The taxonomy here is not exhaustive or mutually exclusive. This schema represents three areas frequently faced by community-based services. Often, these terms are used interchangeably and in combination. For our discussion we will use the word "evaluation" to describe any of several systematic processes for assessing the impact or efficacy of a

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program or intervention. The reader will note that this is often referred to as evaluation research. EVALUATION Evaluation is a mechanism for taking information (data) in its raw form and using it in ways to understand better the effects of social programs and interventions on the phenomenon we are seeing. This process can be applied in many different ways and for different purposes. The critical element that remains constant across all sound evaluation efforts is their systematic application. Systematic application, simply stated, means that we can and must document the design, implementation, and findings in consistent, clear, and concise form. Evaluation and evaluation research have come to be significant tools to assess social service programs. Their form and intensity of use have ebbed and flowed with various social and political forces over the past three decades. Social service programs emerging after World War II and during the War on Poverty were accompanied by a plethora of new evaluation strategies (Chen, 1993). During the Reagan and Bush years, with a guiding philosophy of decentralized government, evaluations of social programs, at least universally applied, declined significantly. Today, as we look at the cost-savings mechanisms being employed in health care settings and rapidly transferred to other human- and social-service settings, we cannot ignore the necessity of documenting the outcomes and processes of our services in a competitive market (Aseltyne, Cloutier, & Smith, 1995; Greene, 1997). A significant concern in evaluation of HIV/AIDS is understanding the roles of agency-based intervention in bringing about client change. This is often a complex matter in real-world studies contrasted with experimental or laboratory study designs (Covey, 1982). In laboratory or classic experimental studies, the researcher has the capacity to manipulate or hold steady most factors influencing the events being investigated at that time. Social work practice is rarely conceived, and less likely applied, under such conditions. Our client interactions are typically focused on the interaction between the client and the environment (Germain & Gitterman, 1980); thus, in our efforts to document effects of program designs and service interventions we cannot separate many factors that exert influence on the client system. This limitation has significant implications for our capacity to truly gauge success of a specific intervention from the intervention's interaction with other forces or factors. Even with these


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limitations we need to document, as completely as possible, the effects of our interventions. Specifically, we will look at ways to work with everyday experiences in HIV/AIDS initiatives to inform agency-based practices. The approach for this discussion is intended to support agency-based efforts in the field. The objective is to create an atmosphere that encourages social workers' efforts without overburdening their senses with technical excesses. Major assumptions that apply here are that social workers are more than marginally familiar with the workings of their agencies and target populations, are committed to providing quality services, will benefit from technical supports related to developing more rigorous mechanisms for evaluating the services they provide, and their critical and planned self-evaluation is a sign of commitment to quality services to client groups. EVALUATION RESEARCH: IT DOES NOT EXIST IN A VACUUM Evaluation is necessarily a political and contextual matter. That a program exists suggests its emergence through some process that exists in the real world. Conceptualizing the evaluation and its implementation must, necessarily, attend to these realities. Evaluation and Social Work Practice — Evaluation as Empowerment and Advocacy As previously suggested, social work practice requires us to work with clients where they are. This perspective predicates our need to attend to myriad forces concurrently affecting the functioning of the target group. Clients affected by HIV/AIDS are dealing regularly with physical health; mental health; and social, political, and other forces. The programs and interventions developed must provide structure yet be flexible enough to accommodate idiosycratic client differences. Although many of our efforts are focused on empowering the client through discrete and direct services, another level of the social work practice continuum calls us to address issues of social justice and social advocacy. The systematic evaluation of our services can contribute to this professional mission. In our service settings we often know or believe that our clients need more than medical care. They need and want housing, education, literacy training, and immigration supports. Conflicts can arise between what we know clients want and what we can offer based on existing program policies and funding constraints. Our ability to document the effects of

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interventions that address client needs as they exist, not just as funding streams would have them exist, is one tool available to us in seeking to rectify this dissonance. Systematic evaluation not only supports our own programs and interventions but also informs and influences a broader social agenda. Conversely, our inattention to this area will support the status quo and we abdicate this role to some other professional group. The latter point is supported by the author's experiences in preparing this chapter. In reviewing the Social Work Abstracts database for the past 20 years (1977-1997), not a single citation was noted in a search using the terms "AIDS program evaluation" or "evaluation of AIDS programs." This is in contrast to 647 citations using the term "HIV or AIDS." In a report by Marin (1995), the author notes that since 1986 there have only been "41 scientific reports evaluating HIV prevention interventions directed at or including primarily African American or Latino samples," and no such reports for Native Americans or Asian and Pacific Islanders (p. 19). In the face of current HIV/AIDS demographics, these findings speak for themselves. Theoretical Perspectives on Evaluations Many authors have written on the issue of evaluation; however, the scope of this work allows three perspectives to be presented briefly here. Participatory Evaluation Participatory evaluation, evolving from studies in developing countries, seeks to increase the participation of stakeholders at multiple levels. More specifically, the focus is on gaining input into the evaluation process from stakeholders who would normally not be partners in the evaluation process — clients and front line staff are examples. Participatory evaluation, furthermore, focuses "on changing larger social structures through a process of grass-roots empowerment" (Papineau & Kiely, 1996). Empowerment Evaluation Empowerment evaluation shares with participatory evaluation the increased role of varying levels of stakeholders and multiple uses of the outcomes, but adds an emphasis on developing the capacity of participants to become more skilled evaluators themselves (empowerment) (Patton, 1997).


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The Integrated Model of Community-Based Evaluation The integrated model of community-based evaluation has, as a major thrust, the goal of increasing evaluation as an ongoing part of the delivery system. Four characteristics are associated with this model: flexible (change is a constant aspect of communities and community-based service programs), adaptable (allowing for the participants to define the intervention or problem addressed), longitudinal (looking beyond the end of funding or service periods), and comprehensive (a wrap-around orientation) (Telfair, 1997). Although these perspectives do not cover the full gamut of evaluation perspectives, they do represent perspectives that move beyond the expert evaluator coming into the setting model of early evaluation initiatives. Evaluation with African-American Families — Contextual Factors In HIV/AIDS work, and specifically work with African-American and black families, many unique factors shape, direct, and impact services, their implementation, funding, and longevity. Elsewhere in this volume the reader has been shown how unique social, political, and economic factors impact the lives of African-American and black families responding to HIV/AIDS. Before moving to a detailed discussion of conducting community-level evaluation, I will state a few of the unique factors facing African-American and black families responding to HIV/AIDS. The terms "African-American" and "black" are not synonymous and the populations referenced are not heterogenous. Work with families labeled by these terms requires attention to the cultural and social factors as well as the anthropological and intrinsic characteristics of the group (Lester, 1993). The historical experiences of these groups with majority medical and social service institutions have significantly impacted the ways in which black and African-American communities perceive and deny the genesis and epidemiology of HIV/AIDS (Airhihenbuwa, DiClemente, Wingwood, & Lowe, 1992; Guinan, 1993; Thomas & Quinn, 1993). Issues of economic inequalities, geographic isolation, and racism have created conditions that promote behaviors associated with the transmission of HIV infection. Acknowledging the social factors that contribute to these circumstances becomes a critical element in the design, implementation, and evaluation of HIV/AIDS services for black and African-American families (Ankrah, 1993; Boyd-Franklin, Steiner, & Boland, 1995; Wallace, 1993).

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Despite recent data suggesting declining trends in death rates and new sero-conversions among white gay men, the numbers for black and African Americans are increasing (Lester, 1993; Lollis, Johnson, Antoni, & Hinkle, 1996). Given the current demographics of this epidemic in the United States, it is very likely that many unique characteristics are impacting other communities seeing increasing HIV/AIDS cases. This chapter does not attend specifically to these other communities; however, the evaluation strategies discussed here should prove useful in any community-based HIV/AIDS effort. EVALUATION: A TOOL FOR COMMUNITY-BASED HIV/AIDS WORK To this point we have discussed issues relevant to conceptualizing evaluation of HIV/AIDS programs and interventions for black and AfricanAmerican families. We now move to a discussion of component elements of an evaluation. Although this discussion will hopefully be of much use to community-based providers it is not intended to replace collaboration with trained evaluators or other literature on the topic. The author provides numerous references in this chapter that will be useful to those seeking a more detailed discussion of community-based evaluation. At the start of this chapter, a brief scenario described a hectic interchange between an agency director and her staff. The immediate need of this fictitious agency was to respond to an external demand. Responding to external demands is an important reason for conducting an evaluation, but it should not be the only one. Increasingly, agencies are seeking greater understanding of the ways in which their services make a difference for those they serve. As was noted earlier, being clear about the need for an investigation is a necessary step in forming a sound strategy for achieving the desired outcome. We move forward with the premise that what follows will benefit agencies seeking to address the question What effect is my program or intervention having.1 Calling the Question — What Type of Evaluation Do We Need? Recognizing the need for an evaluation is an important first step, regardless of the impetus. Engaging in an evaluation, as stated at the outset, is an indicator of a commitment to providing the top notch service to clients. Once the need for the evaluation has been determined the issue of


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what type of evaluation is needed must be addressed. Does the evaluation have to address outcomes? Will the evaluation be used to inform further programming or is the evaluation intended to provide detail about the services offered? It is likely the answer will be some combination of the above. Three evaluation types are presented here. Types of Evaluations Process evaluation addresses three broad questions: What was done, to whom, and how? Process evaluation can also play a role in improving interventions by providing the information necessary to change delivery strategies or program objectives in a changing epidemic. We may also call this type of evaluation interim analysis. Outcome evaluation (also summative evaluation or impact assessment) seeks to identify consequences and to establish that consequences are attributable to a project. Here the questions being addressed are: What outcomes were observed and What do the outcomes mean. The term "outcome" does not mean that you must wait until the project is completed to conduct this type of assessment. Repeated assessment of outcomes is valuable, possible, and appropriate. Formative evaluation is a special type of early evaluation made during and after a program has been designed but before it is broadly implemented. Formative evaluation is used to understand the need for the intervention and to make tentative decisions about how to implement or improve it. During formative evaluation, information is collected and then fed back to program designers and administrators to enhance program development and maximize the success of the intervention (National Research Council, 1991). Process

Remembering that the intent here is to look at how well (true to form) the services are being delivered, data must be gathered on the content of interventions and their delivery systems. This is admittedly no simple task. The process becomes highly complex when our ability to control the circumstances surrounding intervention implementation (threats to validity) is limited or not fully known. Because this is the most common case scenario in many practice settings, particular attention must be given to this area. In a process evaluation we attend specifically to the who, what, when, where, and how of the actual implementation of the program or intervention. If we have not defined a specific protocol for implementation it will be difficult to undertake this type of evaluation and obtain meaningful results.

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For example, in a recent interchange with a local agency, the evaluator was asked to help evaluate the outreach services to families in the community. One phase of the evaluation was to review existing protocols for conducting outreach. Another was to talk with outreach workers about their understanding of the protocol and their experiences implementing it. The evaluator soon learned that there was no detailed written description of what the agency did for outreach. Additionally, and not surprisingly, outreach workers provided varying accounts of their outreach tasks. In the above scenario the missing documentation and the interpretation of outreach created a real dilemma for the agency's evaluation goal. Without a systematic approach to the description and reporting of their outreach efforts it was difficult for the staff or the evaluator to assess whether the outreach was conducted as planned by the agency. Two strategies useful in implementing this type of evaluation are direct observation in the form of case studies (participant observers unobtrusively record encounters) or nonparticipant observations (structured opened interviews or focus groups and record keeping in the way of standardized and structured reporting tools). Both of these strategies require consistency in the implementation process. Creating a detailed intervention and providing training and retraining on the intervention's use will increase the likelihood that all persons involved will be monitoring the same processes. The more we can assure consistency in the implementation, the more rigorously we can support our claims that a given intervention is producing an effect. Outcome At the core of outcome evaluation is our attempt to answer the question What would have happened to the same participants in the absence of the program. In our attempt to understand the impact of interventions on the targeted group, several design alternatives exist. Unfortunately, some designs are not feasible in our daily practice settings (that is, randomized control and double blind studies). The following are three designs for use in outcome evaluations. Nonexperimental before-after, or pre-post study designs. In this design, people are surveyed before and after the intervention. Although we may note change, there are many problems associated with this type of design as we attempt to link our service to the assessed outcome (mediating variables, intervening variables, and other threats). Outcomes of this nature are quite common in community-based practice, however, they typically give us information about immediate responses and do not provide support for long-term effects of the intervention. These designs,


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furthermore, have the potential of netting biased results based on any number of factors, for example, participants' reaction to the weather on any given day, the types of people drawn to a particular event or service, or that the person giving the intervention was particularly well trained compared to any other staff or volunteer. These and other factors can obscure the results and limit our ability to make absolute statements about the success of our services. Quasi-experimental designs. These attempt to overcome limitations as noted in the nonexperimental design; however, various limitations will still exist, namely, the inability to control for variance (differences) between the experimental group and the comparison groups. In this design we may attempt to compare one group with another group to see if the results are consistent. This is an improvement over the nonexperimental design because we can measure differences between groups receiving the service; however, if we do not know about the characteristics of the group members that participated in each group, or if they were not randomly assigned, we may find that we are detecting differences relative to the composition of the groups. Randomized group assignment. This seeks to ensure that the estimated differences between groups are statistically unbiased. Randomized assignment greatly improves our ability to suggest that the groups being compared are not different in major ways other than the degree to which we are applying (treatment group) or not applying (control group) the intervention. Another benefit to this strategy is that when results are obtained we have greater belief that our findings are applicable to a larger audience (generalizable). Legal and ethical considerations are warranted here because randomization can create an appearance of unfairness or raises questions about not giving a service. Formative Evaluation Now, you may be thinking, this is all well and fine, but my project has been underway for a while. I cannot stop what I am doing to accommodate what I may have needed or wanted to do a year ago. This is where interim or formative evaluations are useful. Formative evaluation can be conceptualized as a hybrid of process and summative evaluation designs and can draw on strategies from each of them. The main difference is that formative evaluation seeks to refine work efforts and not to make a final statement on the outcome of those efforts. As noted earlier, this evaluation strategy allows us to look at a work in progress with the intent of informing further intervention (feedback) and evaluation strategies.

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Some of what is being suggested here may seem foreign and initially tangential to the work. Our assertion, however, is that you are already doing most of what is being described. Your daily work requires a level of critical self observation and analysis. What may vary is the degree to which each of us recognizes the potential of what we do for impacting evaluative processes. We are not suggesting that you recreate the wheel, but that you shore up the process for smoother operation and richer understanding of your efforts. Interventions pan out to client services. Designing the Evaluation Process Now that you have decided on the type of evaluation you need, it is time to design your evaluation process. Before you begin handing out evaluations, conducting focus groups, or setting up control designs great thought should be given to what is being measured or evaluated, how it will be measured, and by whom. In work that has not been well supported or documented by evaluation and research studies you may find yourself with more questions than answers. In evaluation work with black and African-American families, this may be the norm instead of the exception (Marin, 1995). Early in the evaluative process consider what your hunches and assumptions are about the way things really operate (your hypotheses). Hypothesis Generation Often the evaluative process will be initiated by a hypothesis or a supposed answer to a question or series of questions. This question sets forth a tentative relationship that you, the provider, would like to understand the services you provide and the process and outcomes of these services (for example, stress associated with persistent poverty increases sexual risk taking behaviors). Hypotheses answer a set of questions to help us direct our efforts — to focus. We hypothesize daily. We link what we know and observe (empirical data) to beliefs about unknown or future events (anticipated outcome). We ascribe a degree of confidence (statistical confidence) that what will occur is what was planned, or we make decisions that our belief (inference) was correct and that our efforts (interventions) resulted in (causality) or are associated (correlated) with the change. This emphasis on hypothesis generation supports a growing trend in evaluative studies to apply theoretical perspectives to social programs and interventions, in addition to data collection methods, as a way of strengthening our understanding of observed phenomena (Chen, 1993; Covey,


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1982). Theoretical perspectives inform our thinking about the way factors are interrelated and can contribute significantly to the ways in which we plan and develop interventions. Attending to the theoretical perspectives that inform our interventions can also help us make critical decisions about programs that do not seem to work with certain populations. I must make a few cautionary notes about hypotheses statements. Hypotheses should be clear and concise statements. Each hypothesis should suggest a single relationship. The elements in the hypothesis should be observable and measurable or should be translatable into measurable states. Program operating principles, goals, and objectives are useful in helping to refine the hypotheses. The following is an example of good hypothesis development. An agency with a long history of conducting community development services obtained substantial funding to provide AIDS Day Treatment Services. In collaboration with their evaluation consultant, the agency decided to incorporate evaluation efforts into the early developmental phases of their project. When asked about the operating hypotheses the agency coordinators were able to articulate several operating principles, but not a concise set of hypotheses. Over a period of several meetings, the staff and evaluators brainstormed about the operating principles and compiled a comprehensive list. Once all participants were comfortable that the list was exhaustive, the group worked to link the principles into hypotheses. After several versions the team emerged with four hypotheses that they endorsed. Goals and Objectives Most agencies operate with defined goals and objectives. The goals and objectives will, hopefully, speak to the reason for your efforts and the outcomes you are seeking (for example, case management of at-risk moms will reduce the number of infants being born with HIV by 5 percent in the community). A frequent dilemma is the creation of goals and, more precisely, objectives that are not stated in measurable terms. Care should be taken to create focused questions that increase the likelihood of being able to attain your evaluative purposes. The creation of compound questions is not an uncommon occurrence. Dividing one complex objective or statement into two or more simplified statements is highly recommended. Central to the development of your hypotheses, goals, and objectives is selecting observable and measurable criteria. Observable criteria are those you can see or capture. Measurable criteria are those you can quantify. This sounds simple enough, but think about things that we often say we

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can measure. Attitudes, values, and beliefs should readily come to mind for the experienced HIV/AIDS worker. Then ask yourself what an attitude or a value looks like. If it were sitting on the office floor, would you be able to identify it based on its mere presence? For most of us the answer is no. What we really call an attitude is some behavior or action that we believe conveys the underlying attitude, belief, or value. This occurrence underscores the difference between a concept and a construct. Concept to Construct In seeking to select the appropriate factors for observation and measurement, you must consider the difference between the idea and the empirical. We might say, for example, that attitudes held by at-risk moms are barriers to mounting effective intervention and prevention campaigns. Although many of us would agree with this statement, capturing the attitude of an individual or even a group is very difficult. What we need is a proxy for this attitude — a construct — that operationalizes the concept. Being unclear about what we are observing and measuring versus what we believe or would like to measure can create big problems when we try to evaluate our services. If we have not done our homework we may find that our professional perspectives are not congruent with the perspectives of those using our services. The net result is that when we attempt to measure our ability to impact an attitude, for example, what we may really be measuring is our interpretation of the attitude. To deal with this situation we may want to use structured assessment measures that have been created and used over time. One shortcoming with selecting existing tools has been their inappropriateness for use in all populations. Many HIV/AIDS interventions draw on models of health belief that suggest that being aware of risk is the first step in altering behaviors that place people at risk. Over time, instruments have been constructed that measure various aspects of health belief. Although these instruments have shown remarkable utility for some populations, their utility is not confirmed with other groups. The use of tried and tested instruments has many advantages; however, the evaluator should be familiar with the instruments and select those most appropriate to the target group. Where there is limited evidence that such instruments exist, the evaluator may seek to combine standard instruments with newly developed measures. References in the professional literature and texts, such as The Measures for Clinical Practice (Fischer & Corchoran, 1994), provide resources in this area. Before you begin to collect the data, you need to consider how to collect it and what data need to be collected. The systematic collection of


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data will be key to providing the information needed to determine the accuracy of the hypothesis and to respond to the inquiries of funders, administrators, and constituents. Systematic data collection can be conducted by using structured instruments created for the purpose of the evaluation, by selecting instruments prepared by others, or by using instruments already in use in the agency setting. Another important question to consider in the development phases of the evaluation is whether you will use a qualitative or a quantitative approach. Quantitative Measures Quantitative measures typically reference numeric representations of variables using scaled instruments and data collection tools. The information gathered is readily transferred to numeric values for data analysis. Qualitative Measures Qualitative measures are systematic investigations that include inductive, in-depth, nonquantitative studies (for example, field studies, focus groups, and ethnographic studies). Although debate has existed for some time between proponents of each perspective, evaluations using mixed or integrated methods are rapidly emerging as the strongest designs. This is particularly true in HIV/AIDS evaluations, where limited information exists about a particular occurrence or group (House, 1994; National Research Council, 1991; Reichardt & Rallis, 1994). The choice as to which to use is not always so clear; both have benefits and short comings. As has been mentioned throughout this chapter, knowing the intent of the evaluation is a key in shaping its design and implementation. Your plans are progressing and you are nearing the time when you are ready to start the actual evaluation. If you have not already done so, you will want to designate a person or persons to be responsible for your evaluation process. Bringing key players to the table early is an important but frequently overlooked aspect of the evaluation process. The time and energy it takes to prepare staff and volunteers to collect useful data will be well worth the effort. Remember, the stuff we are calling data is not just for the purposes of research and evaluation. These data are what make your services work. You are collecting data every minute you work with and for your clients. Collecting and Analyzing Information Executing the evaluation is greatly facilitated when the plan for the evaluation is well articulated and the key stakeholders have been a part of

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the planning process. Informing others of your plans to evaluate and the purposes for your evaluation will help address concerns often raised in the evaluation process. It has been this author's experience that when evaluation comes as a surprise to staff, volunteers, and even program participants the level of resistance increases dramatically. Having representatives from each of these domains can improve receptivity and can contribute to the comprehensiveness of the final product. The following scenario illustrates this process. An evaluation instrument was designed by project coordinators and an evaluator. The instrument was introduced to staff after it was completed. When the administration staff were aware that an evaluation component was part of the overall project, however, the evaluation process had little frontline staff input. Staff response to the instrument was strong and unfavorable. Based on this feedback it was evident that the evaluation process could not proceed for fear that the staff could sabotage the process. The coordinators and evaluator met with the staff for three two-hour sessions. In these sessions the staff were encouraged to express their concerns about the evaluation and were then brought up to date on the project's hypotheses, program goals, and review of the evaluation process. Staff exercises included role playing and an item-by-item review of the evaluation instrument. The feedback from staff resulted in significant changes to the original instrument and included new items developed by the staff. Following this process, staff showed increased understanding of and investment in the evaluation process. In addition to informing others of the evaluation setting, a realistic timetable for evaluation phases is an important task. Making clear the lines of communication and keeping options open for regular feedback can also facilitate what sometimes seems to be an untenable task. Making sense of the data once it is collected is the main purpose for data analysis. Whether the evaluation has used a quantitative, qualitative, or mixed methodology, the time comes when data are in and people want to know what the information says about the effectiveness of the program or intervention. In developing the data analysis strategy, several points are worth noting: data analysis should be considered in the planning phase, resources for data analysis should be calculated into the overall cost of the evaluation, data analysis must provide information that addresses the purposes for the evaluation, and analysis of the data may provide unfavorable information that must be dealt with. The specific issues of data analysis procedures are well beyond the scope of this chapter. The reader is encouraged to collaborate with a knowledgeable source for specifics on data analysis.


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Findings and Results The results are in. After much planning and careful attention to implementation the evaluation process is completed — or is it? Important next steps include presenting the information to the stakeholders and using the information for the purpose for which it was generated (for example, formative evaluation). Different stakeholders may require different amounts and forms of information. The report to the hinder may focus on the relationships between their funds and specific program components. Consumer groups may be more interested in the impact of the study on their ability to obtain services, while staff may be most interested in potential agency changes as a result of this evaluation. There may be many groups and many needs served by one evaluation. Appropriate program staff will want to review the evaluation findings and tailor reports to meet the needs of these various audiences. Decisions will have to be made about presentation formats — written or oral, group or individual. The same diligence employed in designing and implementing the evaluation is warranted at this stage. The most critical factor is that information does not just sit on a shelf or in a storage room. Evaluations that produce nothing — no feedback, no ideas, no discussion — will be remembered by those who participated as a waste of time. Clearly this has the potential for lessening enthusiasm for any future evaluations. CONCLUSION In this chapter we have reviewed theoretical perspectives on evaluation and their relationship to social work practice. The social work principles of empowerment and advocacy were shown to be complementary to evaluative processes. A marked absence of professional literature on evaluation of services for black and African-American families was highlighted and implications for this dearth noted. Throughout this chapter, the author has presented a model of evaluation that is consistent with current trends. Case examples were used to underscore many of the thematic presentations. The thinking behind this approach is that the more we know about prevailing practices the better prepared we are to confront those practices for their shortcomings in our practice domains. As we develop greater skills in evaluation design, implementation, and collaboration the more we can target these efforts to produce desired outcomes with and for black and African-American families impacted by HIV/AIDS.

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NOTE 1. This discussion presupposes that a program was implemented to address a specific problem. Defining the problem is an important step in being able to assess whether your interventions made a difference. A needs assessment is one way of accomplishing this task. The needs assessment is a specific strategy for identifying gaps between services available and client needs. A detailed discussion of needs assessment goes beyond the scope of this chapter. One resource suggested for this purpose is K. A. Newuber, W. T. Atkins, J. A. Jacobson, & N. A. Reuterman. (1980). Needs assessment: A model for community planning. Newbury Park, CA: Sage. REFERENCES Airhihenbuwa, C. O., DiClemente, R. J., Wingood, G. M., & Lowe, A. (1992). HIV/AIDS education and prevention among African-Americans: A focus on culture. AIDS Education and Prevention, 4(3), 267-276. Ankrah, E. M. (1993). The impact of HIV/AIDS on the family and other significant relationships: The African clan revisited. AIDS Care, 5(1), 5-22. Aseltyne, W. J., Cloutier, M., & Smith, M. D. (1995). HIV disease and managed care: An overview. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology, 8, suppl. 1, pp. 11-22. Boyd-Franklin, N., Steiner, G. L., & Boland, M. G. (Eds.). (1995). Children, families and HIV/AIDS. New York: Guilford Press. Chen, H. T. (1993). Emerging perspectives in program evaluation. Journal of Social Service Research, 17(1/2), 1-18. Covey, H. C. (1982). Basic problems of applying experiments to social programs. Social Service Review, 56(3), 424-437. Coyle, S. L., Boruch, R. F., & Turner, C. F. (Eds.). (1991). Evaluating AIDS prevention programs. Washington, DC: National Academy Press. Fischer, J., & Corchoran, K. (1994). Measurews for clinical practice: A sourcebook. Vol. 2, Adults. New York: Free Press. Germain, C. B., & Gitterman, A. (1980). The life model of social work practice. New York: Columbia University Press. Greene, J. C. (1997). Evaluation as advocacy. Evaluation Practice, 18(1), 25-35. Guinan, M. E. (1993). Black communities' belief in "AIDS as genocide": A barrier to overcome for HIV prevention. AIDS Education & Prevention, 3(2), 193-195. House, E. R. (1994). Integrating the quantitative and qualitative. In C. S. Reischardt and S. J. rallis (Eds.), The quantitative and qualitative debate: New prespectives (pp. 13-22). San Francisco, CA: Jossey-Bass. Lester, B. (1993, Fall). The social context of HIV transmission in the AfricanAmerican community. Ethnicity & Disease, 3, 387-394. Lollis, C. M., Johnson, E. H., Antoni, M. H., & Hinkle, Y. (1996). Characteristics


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of African Americans with multiple risk factors associated with HIV/AIDS. Journal of Behavioral Medicine, 19(1), 55-71. Marin, B. V. (1997). Analysis of AIDS prevention among African Americans and Latinos in the United States. In M. Gluck and E. Rosenthal (Eds.), The Office of Technology Assessment (OTA) report: The effectiveness of AIDS prevention efforts. Washington, DC: American Psychological Association. National Research Council. (1991). Evaluating AIDS prevention programs. Washington, DC: National Academy Press. Newuber, K. A., Atkins, W. T., Jacobson, J. A., & Reuterman, N. A. (1980). Needs assessment — A model for community planning. Newbury Park, CA: Sage. Papineau, D., & Kiely, M. C. (1996). Participatory evaluation in a community organization: Fostering stakeholder empowerment and utilization. Evaluation and Program Planning, 79(1), 79-93. Patton, M. Q. (1997). Toward distinguishing empowerment evaluation and placing it in a larger context. Evaluation Practice, 18(2), 147-163. Reischardt, C. S., & Rallis, S. F. (Eds.). (1994). The quantitative and qualitative debate: New perspectives. San Francisco, CA: Jossey-Bass. Telfair, J. (1997, May). A culturally competent and community-based evaluation model: Focus on African American children and adolescents with special health care needs and their families. Paper presented at the Conference on AIDS and the Family, Birmingham, University of Alabama. Thomas, S. B., & Crouse Quinn, S. (1993, Autumn). The burdens of race and history on black Americans' attitudes toward needle exchange policy to prevent HIV disease. Journal of Public Health Policy, pp. 320-347. Vogt, W. P. (1993). Dictionary of statistics and methodology. Newbury Park, CA: Sage. Wallace, R. (1993). Social disintegration and the spread of AIDS-II: Meltdown of sociogeographic structure in urban minority neighborhoods. Social Science and Medicine, 37(1), 887-896.


7 Report from the Washington Summit on Social Work Leadership and AIDS in African-American Communities Larry M. Gant, Willis Green, Jr., Vincent J. Lynch, Patricia A. Stewart, Darrell P. Wheeler, and Ednita M. Wright

Hopefully, June 28-29, 1997, will become a historical watershed, when finally, fatefully, a small but determined group of 37 African-American social workers compelled the eyes, hearts, and minds of their fellow African Americans to meet head-on the spectre of HIV/AIDS in AfricanAmerican communities. If successful, the outcome of this National Social Work Leadership Summit Meeting on HIV/AIDS and African Americans will be the first major, comprehensive response by African-American social workers for African Americans infected or affected by the disease. The 37 social workers identified were neither members of some elite social register nor members at prestigious institutes of socially removed intelligentsia. Instead, these social workers were selected because of their long years of clinical or community practice frontline work with AfricanAmerican populations within African-American communities. Most, but not all, of the membership worked directly in the areas of HIV/AIDS. The three objectives were simple: to raise consciousness, sounding an alarm to national African-American social work leaders regarding the extent of the AIDS crisis in the United States; to build cohesion, mobilizing African-American social work leaders into a unified force in the fight against AIDS in African-American communities;

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to develop strategies and an action plan that identified roles and activities through which social work could assist in HIV prevention and education in AfricanAmerican communities. THE RESULTS OF THE SUMMIT Creation of a Mission Statement "The African-American HIV/AIDS Leadership is a Social Work Advocacy Group founded to promote culturally competent and comprehensive approaches for the education, prevention, intervention, research, and evaluation of HIV/AIDS, respecting and recognizing the dignity, spirituality, and economic well-being among persons of African descent." Five Challenges for an African-American Response to HIV/AIDS The five most critical thematic challenges for an African-American response to HIV/AIDS were determined to be: the need for more national fact finding (that is, what is going on, what needs to be developed, and so forth); the silence of the social work profession in the AIDS crisis and the need for a strong response from its schools, institutions, and organizations; the identification and discussion of child welfare issues in light of the explosion of needs because of the AIDS orphan issue in African-American communities; the need to get AIDS on the broad social work agenda (more AIDS content in social work conferences, in social work journals, and so forth); and the need to conduct high quality community-based, empirical research around prevention and treatment by African-American researchers. Personal Plans of Commitment and Action After a general discussion of the key points, five small groups were organized and a working dinner meeting was conducted to incorporate the general discussion into a specific discussion of action plan development and implementation. Each group was charged with developing a work plan and a timetable for each initiative to be undertaken, setting milestones for the achievement of subgoals and tasks, identifying a lead contact for each group who would coordinate and disseminate information for

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the small group,1 and developing a check-in system for the small group as a way to measure and monitor progress toward carrying out the action plans. Each group was also instructed that the action plans should reflect cultural, contextual, and community responses that address the ways in which the AIDS epidemic intersects for African Americans with the coexisting epidemics of poverty, racism, homophobia, ageism, and class and gender disparities. Follow-up and periodic review of group plans prior to a second national conference included: each group's lead contact person initiating phone or fax contact with group members on a biweekly basis during the summer to divide tasks and monitor progress of action items; the submission of a progress report to the core faculty and facilitators of the conference; a meeting of core faculty in early October 1997 at Boston College to review small group progress reports and to shape the agenda for the Prevention Conference2; seeking input for the Atlanta Prevention Conference from all summit participants in early October 1997; distributing a progress report to the entire group in late October 1997 by core faculty; during November and December 1997 and January 1998, continuing work by small group lead contacts around their action items; lead contacts encouraging promotion of the Prevention Conference; and the entire group of summit participants reconvening in Atlanta during the HIV Prevention Conference, February 20-22, 1998, to review progress on action items and to determine any future work together that the group wishes to carry out. THE IMMEDIATE FUTURE It was further agreed that this entire group, and a wider audience of people committed to further articulating and implementing social work responses for HIV/AIDS strategies in African-American communities, convene in Atlanta, Georgia, in February 1998. At this three-day national skills building conference, the progress on action plans would be reviewed, personal and professional commitments to activities be

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reconfirmed, and the movement catalyzed into nationwide, synchronous activity. OBSERVATIONS A N D C O N C L U S I O N S What distinguishes this summit from other prior attempts? The conveners of this summit were mindful of the number of prior attempts to galvanize African-American response to HIV/AIDS — and of their earnest and sincere efforts and all too modest outcomes. Although it is too early to conclude the efforts of this summit were any more or less successful than prior efforts, the conveners reviewed the efforts and results of prior meetings and attempted to build on those efforts with the following efforts: HIV/AIDS conferences where academics talk largely to other academics, frontliners to other frontliners, and community organizers only to other community organizers will not reap the benefits of a synergistic, multidisciplinary, and multiprofessional approach. We recognized the need to integrate and synthesize the needs to access and mobilize African-American communities with appropriate academic and scientific expertise and the time tested strategies of community organization and social action — hallmarks of professional social work macropractice and political action. Discussion of AIDS is a discussion of many other issues, some of which are painful and difficult to share openly among ourselves. We recognized the need to address directly and bear witness to the unspoken barriers we felt impeded a collective African-American response. The issues of homophobia, classism, sexism, sexuality, spirituality and power, class, and economic imbalances within African-American communities were honestly and candidly discussed. We recognized the banality and futility of leaving conferences with wellsprings of good feelings and mission but no action plan, no ownership, and no commitment to critical analysis, praxis, and action. We thought the generation of simple but specific action plans with clear lines of responsibility and activity timetables, coupled with the commitment to follow-up, would be a very different and enabling way to end the summit. We recognized the need to meet before another year elapsed, hence the meeting in February 1998. Given the needs for updated information about the pandemic, possible resources, and models for prevention and action, we felt that a meeting in a location very near the single most extensive HIV/AIDS resource site in the United States — the Centers for Disease Control and Prevention in Atlanta, Georgia — would provide a dramatic and effective response to these needs.


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These are encouraging activities and, from our experience, produced outcomes we have not seen in prior summits, conferences, or workshops. Ultimately, the success of this summit will be realized only in the not too distant future with the leveling off and decreasing of new HIV infections, routine discussions of HIV/AIDS interventions and activities in AfricanAmerican media, and an identified ease and ready response reflecting progressive action when the query is raised in coming years, What were the HIV/AIDS responses in African-American communities. We came together in great anticipation. Four of the seven facilitators had waited a decade for this day. The plans begun in the hearts of a few were now a reality. African-American leaders from all across the nation had answered our call. There was so much at stake, so many lives had already been lost; could we do what was necessary to turn this pandemic around? As the hotel reception room filled with our energy as we welcomed each other, met new colleagues, and hugged and kissed old friends, we were bursting with pride at being a part of this historic moment. We are indeed powerful people. Exchanges filled the room: What do you think? Why did you come? I am sorry to hear about the death of . Do you think we can do whatever it is that we need to do? How is ? As I listened, I wondered whether we could put aside the crabs-in-a-pail syndrome and come together as one unstoppable force — a force that would demand equal access to treatment protocols, the development of prevention and intervention programs that speak directly to African-American communities, and the support that would create the opportunities to train African-American researchers. Our agenda was clear — to provide information and obtain concrete commitments to work toward a national agenda that would seek to decrease the number of African Americans infected by AIDS — but I do not believe we took into consideration the emotion that would be in that hotel as we came together. We struggled with what specific issue was the most important. We struggled with our own homophobia. We struggled with freeing ourselves and each other from internalized oppression. We struggled with hearing each other's pain, despair, and lack of faith. We struggled and left with not too many casualties. We left with an overarching priority to create a resource center for social workers and AIDS that would provide the platform and exposure to create a national research agenda that would focus on African Americans. Five other areas were addressed and action plans were developed:

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give AIDS priority on the social work agenda; implement a multiple-site, community-based research study; enlist the support of other schools of social work; conduct a national survey of available resources; and address child welfare. The full text of the post-summit meeting report follows. National Social Work Leadership Summit Meeting on HIV/AIDS and African Americans June 28-29, 1997 The Carlton Hotel Washington, DC Meeting Report Prepared by: Vincent J. Lynch, DSW — Summit Meeting Coordinator Boston College Graduate School of Social Work Chestnut Hill, MA 02167 July 7, 1997 This project is organized by Boston College Graduate School of Social Work in collaboration with Columbia University School of Social Work, University of Michigan School of Social Work, Syracuse University School of Social Work, Harlem United Community AIDS Center and the National Social Work AIDS Network (N-SWAN). It is funded, in part, by a grant from Glaxo Wellcome, Inc.

EXECUTIVE SUMMARY Thirty-seven African American social work leaders from all regions of the US convened in Washington, DC on June 28-29, 1997 for the purpose of focusing on the exploding HIV/AIDS crisis in African American communities. Those who attended the meeting included deans and professors from schools of social work, as well as administrators and service providers from AIDS service organizations (ASOs) and community based organizations (CBOs) which provide generic human services (including, but not limited to, AIDS services). At this meetings a set of responses to the epidemic was developed by African American social workers for


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African Americans. The need for such a meeting became apparent in the last year when these data became available: • • • • •

although African Americans comprise 11% of the US population, over 40% of persons living with AIDS are African American; If current trends continue, by the year 2000, more than 50% of those living with AIDS will be African American; nearly 70% of all children with AIDS are African American; AIDS has overtaken homicide as the number one killer of African Americans, ages 25-44; it is anticipated that there will be 75,000-100,000 motherless children in the US because of AIDS by the year 2000 and nearly 70% of those children will be African American;

• Nearly 60% of all women living with AIDS are African American; The summit meeting was conducted with these objectives in mind: • • •

to sound an alarm to national African American social work leaders regarding the extent of the AIDS crisis in the US (raise consciousness); to mobilize African American social work leaders into a unified force in the fight against AIDS in African American communities (build cohesion); to develop an action plan which will identify roles and activities which social work can play in African American communities regarding HIV prevention and education (develop strategies).

General sessions were held which focused on efforts at more fully understanding the enormity of the present crisis and how each person at the meeting was impacted by this crisis in their personal and professional lives. Five breakout groups were then formed, each led by a summit faculty member. Individuals were assigned to break out groups based on the region of the country they represented (Northeast, New York Metropolitan Area, Mid-Atlantic, South, West-Midwest). In breakout groups individual action plans were developed which will target various unmet needs in the area of HIV/AIDS. Efforts will be made by participants to carry out action plans over the next six months. Periodic "check-ins" will be made by summit faculty members to participants to review the status of individual action plans. The entire group will re-convene in Atlanta during the February 20-22, 1998 African American HIV Prevention Conference. Action plan updates will be given at that time and plans for future work will be discussed. The group also prepared and adopted a mission statement.

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MEETING REPORT National Social Work Leadership Summit Meeting on HIV/AIDS and African Americans June 28-29, 1997 Washington, DC Introduction On the weekend of June 28-29, 37 leading African American social work professionals from academia as well as service delivery settings convened in Washington, DC to address common personal and professional issues surrounding the massive explosion of HIV/AIDS infection in African American communities nationwide. The weekend's activities included discussions about the ways in which HIV/AIDS has impacted each participant's personal and professional lives and those discussions resulted in the development of a set of priority areas and key actions which address those priorities. The group agreed that there is a disturbing level of inaction in all sectors of African American communities regarding HIV/AIDS despite the fact that it is now the number one killer of African Americans, age 25-44. A unified commitment was made by participants to carry out activities and tasks in their communities, organizations, and regions. These activities will comprise a major response to the HIV/AIDS crisis by African American social workers for African Americans who are affected by or infected by the disease. In addition, the group developed and agreed upon a mission statement of its purpose and pledged ongoing work together which would continue beyond the weekend meeting. The mission statement declares that: 'The African American HIV/AIDS Leadership is a Social Work Advocacy Group founded to promote culturally competent and comprehensive approaches for the education, prevention, intervention, research/evaluation of HIV/AIDS, respecting and recognizing the dignity, spirituality, and economic well being among persons of African descent."


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Brief History and Purpose of the Leadership Summit A team of African American social work professionals have worked closely with Dr. Vincent J. Lynch, Boston College Graduate School of Social Work, since 1993 to expand and develop African American content in the Annual Conference on Social Work and HIV/AIDS which Dr. Lynch chairs. This team includes Dr. Larry Gant, University of Michigan School of Social Work, Mr. Willis Green, Jr., Harlem United Community AIDS Center, Ms. Pat Stewart, consultant and adjunct faculty, LaSalle University, Dr. Darrell Wheeler, Columbia University School of Social Work, and Dr. Nina Wright, Syracuse University School of Social Work. In the fall of 1996 when an AIDS summit on African American issues was conducted by the Harvard AIDS Institute, this team began to consider that perhaps a summit style meeting of African American social work leaders should be conducted in the next year to discuss the AIDS crisis and to formulate clearer strategies for African American social workers to respond to the AIDS crisis in African American communities. The team obtained partial funding for such a summit from the pharmaceutical company, Glaxo Wellcome, Inc. Matching funds were authorized by Dean June Gary Hopps at Boston College Graduate School of Social Work, the school which founded and continues to be the principal organizer of the Annual Conference on Social Work and HIV/AIDS, now in its tenth year. During the late fall, 1996 and winter-spring of 1997, the team developed an agenda for the meeting, explored possible sites for the meeting, and developed an invitational list of 100 African American social work leaders. Only 30 responses to the invitation would be accepted given the need to keep the summit relatively small so that it truly could be a working group. The team was very clear that it wanted this summit to have tangible outcomes which could be monitored over time. Concurrent with the planning of the summit, the team also submitted a proposal to the Centers for Disease Control and Prevention for an HIV Prevention Conference grant which would focus on the role of social work in HIV prevention strategies for African American communities. Those funds were obtained and the prevention conference will be another product which builds on the team's activities. Those attending the summit will have input into the Prevention Conference as the agenda is shaped. That conference will be February 20-22, 1998 in Atlanta. Finally, the team (more recently designated as the core faculty for the summit) contracted with Ms. P. Catlin Fulwood, an organizational development consultant based in New York, to facilitate the summit meeting. They also contracted with Elias Ferajaje-Jones, an HIV educator from

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Oakland, CA who developed Africentric opening and closing rituals for the summit. Africentric perspectives involving the concept of "call and response" were utilized during the summit. Key Points A number of key points were identified by participants in the first general session of the summit. These comprised a "wish list" or a list of key initiatives which participants would like to see in African American HIV/AIDS care. They include: • More adolescent-focused initiatives — teen pregnancy, HIV prevention, education • More children-centered programs • More church-based initiatives • More National Organization-based initiatives • More HIV/AIDS education for social work students as well as practitioners • Training of community workers who could teach students • An AIDS course model which deals with African American issues • More international initiatives • More mentor programs • Technical assistance to African American communities • More research on Prevention/Intervention • AIDS in the Workplace initiatives • Clinical Trial participation by African Americans • Home-based services • Organizing HIV+ men and women • Child welfare policy, services, support • Addictions and mental health services and research • Collaborations between minority CBOs on AIDS issues • Lobbying efforts • National model of prevention/intervention/treatment for African American women • A clearinghouse, resource center, web-site established for African American AIDS issues • A speakers' bureau established • Managed care, welfare reform


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• More media attention to AIDS and African Americans General Discussion of Key Points From the general discussion of the key points identified, five major themes seemed to emerge rather prominently as areas where gaps/barriers/needs exist most. These included: • The need for more national fact finding (i.e., what is going on, what needs to be developed, etc.). • The silence of the social work profession in the AIDS crisis and the need for a strong response from its schools, institutions, and organizations. • Child welfare issues in light of the explosion of needs due to the AIDS orphan issue in African American communities. • The need to get AIDS on the broad social work agenda (more AIDS content in social work conferences, in social work journals, etc.). • The need for carrying out community based, qualitative research conducted by African American researchers around prevention and treatment. After a general discussion of the key points, small groups were organized and a working dinner meeting was conducted which incorporated the general discussion above into a discussion of action plan development and implementation. Small Groups — Process and Content Issues All participants were assigned to one of five tables for the working dinner meeting. Table assignments were made largely due to geographic representation. These included: a) b) c) d) e)

Table 1 — Northeast Region — Darrell Wheeler, facilitator Table 2 — New York Metro Region — Catlin Fulwood*, facilitator Table 3 — Mid-Atlantic Region — Nina Wright, facilitator Table 4 — Southern Region — Willis Green, Jr., facilitator Table 5 — West/Midwest Region — Pat Stewart, facilitator

•Larry Gant was to serve as facilitator for Table 2, but was unable to participate due to a family need. He will work with Table 2 participants in the post-summit period.

Each table discussed possible individual and/or regional responses in the small group format during and after the working dinner meeting. Each

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table was charged with: a) developing a work plan and a timetable for each initiative to be undertaken. b) setting milestones/benchmarks for the achievements of sub-goals and tasks. c) identifying a lead contact for each group who will coordinate and disseminate information for the small group. That lead contact will also send progress reports to the core faculty of the summit periodically. d) developing a "check-in system" for the small group as a way to measure and monitor progress toward carrying out the action plan(s) developed. Furthermore, each group was instructed that the action plan(s) developed should reflect cultural/contextual/community responses that address how the AIDS epidemic intersects for African Americans with the co-existing epidemics of poverty, racism, homophobia, ageism, and class/gender disparities. Small Groups Report on Proposed Action Plans Most of the last session of the conference was spent fine tuning action plans and then presenting each small group plan(s) to the large group for comments and suggestions. Below are highlights of action plans presented by each group, Group 1 — Darrell Wheeler, Reporter Areas of Concern • understanding sexuality in public life • understanding stigma, denial • confronting myths • confronting violence in lesbian relationships • what are the ethical issues relating to who gets the virus . . . who does not • confronting classism • confronting power, class, economic imbalances • understanding cultural messages around sexuality Action Steps • conduct focus groups to gather more information about areas above. • organize a speaker's bureau to address above topics. • develop a template for culturally relevant research strategies. Group 2* — Tricia Bent Goodley and Melba Butler, Reporters Areas of Concern • child welfare issues/policies • guardianship policies

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public support for families AIDS orphan issues building HIV/AIDS content into social education working with the media

Action Steps • contact CSWE, NASW, NABSW, CWLA to assure HIV/AIDS African American content in their professional meetings over the next five years. • contact CWLA for support of guardianship subsidy. • contact HBO, BET, Lifetime, MTV, Spike Lee, National Association of Black Journalists, Queen Latifah, sports figures regarding their need to support HIV/AIDS causes and to inform. • develop public service announcements. •Larry Gant will also be added to this working group in the post-summit period. Tricia will contact Larry. Group 3 — Nina Wright, Reporter Areas of Concern • need to deal with national leaders and national organizations • need to connect with fraternities, sororities • need to connect with National Medical Society • need to connect with clergy • what is out there . . . what needs to be gotten? • social work educators come from a Eurocentric model • what messages need to be delivered . . . who should deliver the messages? • need to make public what is private Action Steps • conduct a national needs assessment of what organizations have done and what organizations need to do. • plan a National Center to coordinate multifaceted action plans as well as to serve as a clearinghouse for resources and information. • develop strategies to better connect with media. • establish a web site on the Internet for information dissemination. • institute contact with national organizations listed above.

Group 4 — Maestro Evans, Reporter Areas of Concern • disparity of resources in urban v. rural areas • lack of clarity regarding existing resources • need for information to be organized • need for technical support/assistance • gaps in social work education re: HIV/AIDS both in schools and in continuing education

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• need for greater degree of partnerships with churches, schools of theology, and related organizations to deal with grieving, dying, spiritual issues Action Steps • obtain funding from CSWE Millenium Project to be used for national faculty development workshops for social work professionals. • develop a manual which explains acronyms used in AIDS care (such as HOPWA, HRSA, etc.). • develop a national clearinghouse/resource center. • provide urban technical assistance to rural communities. • use community based persons for adjunct faculty in schools of social work. • have deans at this meeting contact their fellow deans to attend the February conference. • give complimentary registrations to the prevention conference to all who attended the summit and ask that each person commit to getting at least five of their local colleagues to attend as well. • add Norfolk State, Southern, Howard, and Clark Atlanta to the list of schools of social work sponsoring the prevention conference. Group 5 — Pat Stewart, Reporter Areas of Concern • identify more fully the "sources of silence" • identify more fully the sources of hurt • confront the "Mandingo" complex (i.e., middle class blacks who "don't believe" gay men exist) • confront barriers, taboos, lies, denial, myths, lack of leadership, lack of ownership Action Steps • develop public service announcements about this summit to be disseminated to all participants who in turn will disseminate them to their organizations, communities. • commit ourselves to talk more openly/honestly • need a comprehensive list of what already is being done . . . we "don't want to reinvent the wheel" • need to develop workshops that can be given at NMAC's CBO Directors' Retreat, as well as the recently formed US Conference on AIDS.

Plan For Follow-up • each group's lead contact person should institute phone/fax contact with group members on a bi-weekly basis this summer to divide tasks and monitor progress of action items • each group's lead contact person should submit a progress report in writing to the core faculty (can be sent to V. Lynch who will distribute) by September 30


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• core faculty will convene in early October at Boston College to review small group progress reports and to shape agenda for the Prevention Conference. Input for prevention conference will be sought from all summit participants in early October • core faculty will distribute a mid-point progress report to the entire group in late October • Nov., Dec, Jan. — small group lead contacts will continue to work with group members around their action item(s). Lead contacts will also encourage promotion of the prevention conference • Feb. 20-22 — entire group re-convene in Atlanta during the prevention conference to review progress on action items and to determine what (if any) future work together that group wishes to carry out. SUMMIT AGENDA National Social Work Leadership Summit Meeting on HIV/AIDS and African Americans June 28-29, 1997 The Carlton Hotel 16th and K Streets NW Washington, DC 20006 This weekend meeting will bring together national African American social work leaders with these objectives in mind: • to sound an alarm to leaders regarding the extent of the AIDS crisis in African American communities (raise consciousness) • to mobilize leaders into a unified force in the fight against AIDS in African American communities (build cohesion) • to develop a range of action plans which leaders can develop and commit to carrying out in their organizations and communities (develop strategies) Core Faculty: Larry Gant, Willis Green, Jr., Patricia A. Stewart, Darrell Wheeler, Nina Wright Opening and Closing Rituals: Elias Ferajaje-Jones Facilitator: P. Catlin Fullwood Administrative Coordinator: Vincent Lynch

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Saturday June 28 1.00-2:30 p.m. 2:30-3:15 p.m. 3:15-3:45 p.m. 3:45-4:00 p.m. 4:00-4:05 p.m. 4:05-4:20 p.m. 4:20-4:40 p.m. 4:40-5:00 p.m. 5:00-5:15 p.m. 5:15-5:40 p.m. 5:40-6:10 p.m. 6:10-6:45 p.m. 6:45-7:15 p.m. 7:15-7:30 p.m. 7:30-10:30 p.m. 10:30 p.m.

Arrivals at hotel, check in Gathering, Welcoming Reception Opening Ritual Elias Brief introductions Why this Summit? Why Now? Panel, Core faculty Assumptions, Myths, Realities about AIDS and African Americans Panel, Core faculty Response Framing Our Hopes for An Action Agenda Panel, Core Faculty Break Towards Effective Action Planning Catlin Response — The Charge to the Group — Announcements Panel, Core Faculty Break Gather for Dinner Working Dinner Meeting Five Tables, seating arrangements to be Closing Comments Catlin Adjourn

Chesapeake Room Mt. Vernon Room Mt. Vernon Room Mt. Vernon Room

Mt. Vernon Room

Mt. Vernon Room Mt. Vernon Room Mt. Vernon Room

Potomac Room Potomac Room announced

Sunday June 29 Mt. Vernon Room Continental Breakfast Mt. Vernon Room Facilitator's Report Catlin Mt. Vernon Room 10:00-11:00 a.m. Action Plan Fine Tuning Small Groups 11:00 a.m.-noon Individual Presentations of Action Plans Mt. Vernon Room to Large Group Noon-12:30 p.m. Plan for Follow-up Mt. Vernon Room Catlin, Core faculty 12:30-12:45 p.m. Closing Comments Mt. Vernon Room Catlin 12:45-1:15 p.m. Closing Ritual Mt. Vernon Room Elias 8:30-9:30 a.m. 9:30-10:00 a.m.


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LIST OF PARTICIPANTS Ron Armstead* Harvard School of Public Health 718 Huntington Ave. Boston MA 02115 617-432-3055

Doris A. Coleman CHAMP Program 907 S. Wolcott Ave. Chicago IL 60612 312-413-5733

Gary Bailey* Boston Parents & Childrens Services 654 Beacon St. Boston MA 02215 617-437-1777

E. Hill De Loney Flint Odyssey House Health Awareness Center 1225 Dr. Martin Luther King, Jr. Ave. Flint MI 48503 801-238-2801

Tricia Bent Goodley 190-11 115th Dr. Jamaica NY 11412 718-526-2400-

Leonard Dunston President NABSW 8436 W. McNichols St. Detroit MI 48221 313-862-6700

Harold Briggs* Portland State University Graduate School of Social Work Box 751 Portland OR 97207 503-725-5020

Maestro Evans AID Atlanta 1438 W. Peachtree St. Ste. 100 Atlanta GA 30309 404-885-6800

Frances Brisbane* Dean SUNY Stonybrook School of Social Welfare Level 2, Rm. 093 Stony Brook NY 11794-8231 516-444-2139

Elias Ferajaje-Jones 472 43rd St. Oakland CA 94609 510-653-0139

Melba Butler Executive Director Harlem Dowling Westside Center 2090 Adam Clayton Powell Blvd. New York NY 10027 212-749-3656

Tawana Ford Sabbath Sabbath Funeral Service 2530 N. Broad Street Philadelphia PA 19132 215-227-7811

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P. Catlin Fullwood 540 Fort Washington Ave. #4A New York NY 10033 212-781-3732

Ella Harris 11802 Dorchester Road Brooklyn NY 11226 718-287-9242

Larry Gant* University of Michigan School of Social Work 2060 C. Frieze Bldg. 105 State Street Ann Arbor MI 48109-1285 313-763-5990

Aminifu R. Harvey 526 Oneida PL, N.W. Washington, DC 20011 410-706-3600

Dorie Gilbert Martinez University of Texas School of Social Work 1925 San Jacinto Austin TX 78712 512-471-8229

June Gary Hopps Dean Boston College GSSW McGinn Hall Chestnut Hill MA 02167 617-552-4290

Brenda Gray Big Sisters of Philadelphia, Inc. 1315 Walnut St. 14th Floor Philadelphia PA 19107 215-735-7775

Freda Hunt Dimock Community Health Ctr. 55 Dimock St. RoxburyMA02119 617-267-5782

Willis Green, Jr. Harlem United Community AIDS Center 207 W. 133rd St. New York NY 10030 212-531-1300

Julianne James 243 Bailey Rd. Yeadon PA 19050 610-622-6769

Mary Pender Greene Jewish Board of Family & Childrens Services 120 W 57th St. New York NY 10019 212-582-9100

Timothy James Johnson* Roberts Wesleyan College 2301 Westside Dr. Rochester NY 14624-1997 716-594-6013

Report from the Washington Summit Billy Jones Macro International 11785BeltsvilleDr. Ste. 300 Calverton Md. 10705

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Shirley McClerkin-Motley S.C. Dept. of Social Services Box 1520 Columbia SC 29202-1520 803-734-6044

301-572-0203

Hugo Kamya Boston College GSSW Chestnut Hill MA 02167 617-552-2539

Sandra McDonald Executive Director Outreach, Inc. 3030 Campbellton Rd., SW Atlanta GA 30311 404-346-3922

Bogart R. Leashore Dean Hunter College School of Social Work 129 East 79th St. New York NY 10021 212-452-7085

Moses Newsome Dean Norfolk State University The Ethelyn R. Strong School of SW 2401 Corprew Ave. Norfolk VA 23504 757-683-8668

Marjorie Lester Irby Oakland Psychological Clinic, P.C. Rochelle Centre 2360 S. Linden Rd. Ste. 300 Flint MI 48532 810-732-0560

William Pollard Dean Syracuse University School of Social Work 123 College Place, Sims Hall Syracuse NY 13244-1230 315-443-5582

Vincent Lynch Boston College GSSW McGuinn Hall Chestnut Hill MA 02167 617-552-4038

Mary Redd* Executive Director Steinway Child and Family Services, Inc. 31-62 27th St. Long Island City NY 11101 718-389-3656 ext. 528

Philip Mack Boston University School of Social Work 264 Bay State Rd. Boston MA 02215 617-353-3750

Chardial Samuel Blacks Assisting Blacks Against AIDS 3115 Grand, Ste. 506 St. Louis MO 63118 314-865-1600

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Richard Scott CHAMP Program 907 S. Wolcott Ave. Chicago DL 60612 312-413-5733

Willie Wise 11656 S. Laurel #2C Laurel MD 20708 301-317-1926

Ernestine Simpson 307 B. Mitten Lane Mt. Laurel NJ 08054 609-866-8795

Joy Workman* 1110FidlerLane#909 Silver Spring MD 20910 301-589-1529

Pat Stewart 806 Laurel Rd. Yeadon PA 19050 610-626-1478

Ednita Wright Syracuse University School of Social Work 415 Sims Hall Syracuse NY 13244 315-443-5563

Darrell Wheeler Columbia University School of Social Work 622 W. 113th St. New York NY 10025 212-854-5741

Dana Williams Blacks Assisting Blacks Against AIDS 3115 Grand Ste. 506 St. Louis MO 63118 314-865-1600

Erise Williams Blacks Assisting Blacks Against AIDS 3115 Grand Ste. 506 St. Louis MO 63118 314-865-1600

*invited, but unable to attend

NOTES 1. That lead contact was also to send progress reports to the core faculty of the summit periodically. 2. In fact, this update meeting took place during September 1997 in New Orleans, Louisiana.

8 Where Are We and Where Do We Need To Go: A Blueprint for the Future Larry M. Gant, Willis Green, Jr., Vincent J. Lynch, Patricia A. Stewart, Darrell P. Wheeler, and Ednita M. Wright

As we end this book, it is August 1998 — 17 years after the first reported cases of AIDS and less than 2 years before the new century. A collective response to HIV/AIDS in African-American communities is long overdue. Ironically, the dramatic increases in HIV infection and AIDS cases continue in the shadow of extensive information, treatment strategies, and care approaches. All the material resources needed to implement and maintain change are within the grasp of African-American communities — save the collective will, courage, and faith to make it happen. Consider what is now available and what we now know. TREATMENT According to the best of empirical research and scientific knowledge, HIV infection is completely and absolutely preventable. Implementation of this knowledge requires a health-focused, pragmatic response devoid of moral extremism. Testing for HIV is now widely available and, with oral administration, is nearly completely noninvasive. Treatment of opportunistic infections is substantially more efficacious than previously and is getting better. Treatment of viral replication of HIV has not yet led to a cure, but, for many people (about 70 percent) living with AIDS, combination therapy is

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resulting in an improved quality of life for a longer period of time. Buoyed by this partial success, pharmaceutical corporations are testing many more medical treatments at increasing rates. The Ryan White CARE Act provides a safety net of sorts for emergency care needs of people living with HIV/AIDS. It is far from perfect, but it is a valuable resource. The availability of geographic information systems allows visual trackings and projections of the epidemic across distance and time. PREVENTION Condom distribution programs do not lead to increased sexual activity or experimentation. Use of risk reduction incorporates and integrates the use of a variety of preventive strategies, from abstinence to eroticization of safer-sex activities and has been shown to be effective. HIV/AIDS school curricula have been created for children for all primary and secondary grades with specific guidelines and expectations for each grade. Syringe exchange programs do not lead to increased injection drug use. We also know of the challenges that await African-American communities. CHALLENGES TO TREATMENT Combination therapy increase risks of nonadherence to medication regimens and has resulted in the extremely risky and ill-advised use of "drug holidays." Longer life has not always translated into better quality of life for people living with AIDS. Although return to work initiatives are increasing, these initiatives presuppose pre-existing educational and employment competencies not found in some African Americans living with HIV/AIDS. The number of African Americans living with AIDS will increase, taxing already overburdened case management, care, and treatment systems. Staff stress and burnout are resulting in increased departure rates of HIV/AIDS-experienced social work professionals, leading to a brain drain in many states.

A Blueprint for the Future

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CHALLENGES TO PREVENTION Current prevention strategies are not working to stem the rate of new HIV infections among African Americans. The number of intervention programs targeting African-American communities is far fewer than necessary. Some specific prevention initiatives (for example, DiAna DiAna's "Heads-Up" programs for beauty shops, Detroit Health Department's NJIDEKA program for African-American drug-dependent women) have particular utility for African-American communities but require a national dissemination effort. Other interventions (for example, Jemmott & Jemmott [1992]) require a contextual and informational update. Current and future prevention initiatives require extensive multidimensional evaluations and extensive distribution and replication efforts. The complex response of HIV/AIDS among African-American communities can be characterized with denial, blindness, and deafness to the prevalence and incidence of HIV/AIDS, boisterous expressions of homophobia, and tacit acknowledgment of compassionate care responses. The preceding chapters provide an outline for what must be done and soon. What follows is a summary of the beginnings of an action agenda. STRATEGIES We need more and better strategies to develop effective social work interventions with African-American populations. The need to develop interventions that integrate personal and community level behavioral, affective, and spiritual change efforts is clear. Barbara Marin's review of published intervention efforts (1997) revealed only 37 scientific intervention reports targeting African-American communities published since 1986. The number of publications by year is informative and distressing (Figure 8.1). This much appears clear: generating interventions for millions of African Americans cannot be done on the basis of 37 articles, the majority of which were published prior to the innovations of combination therapy. (As of December 1997, the three articles had been accepted for publication but had not yet appeared in print.) Of these studies, 20 focused on adolescents, 7 on injection drug users (IDUs), 8 on women, 4 on patients with sexually transmitted diseases, and 1 on gay men. Here, we note the differential attention on youth, somewhat less on IDUs and women, and the near absence of studies on African-American gay men, lesbian and bisexual women, and heterosexual males who are not IDUs.

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There is not yet a critical mass of work from which to generate effective interventions. This is a critical gap that must be addressed immediately.

FIGURE 8.1 Published Empirical Reports of HIV/AIDS Interventions Focused upon African-American Populations

Source: Data from B. V. Marin. (1997). Analysis of AIDS prevention among African-Americans and Latinos in the United States. In M. Gluck and E. Rosenthal (Eds.), The Office of Technology Assessment (OTA) report: The effectiveness of AIDS prevention efforts. Washington, DC: American Psychological Association.

IMPLEMENTATION As better strategies emerge, we need to implement at least the existing strategies for evaluating our AIDS organizations and programs. The Centers for Disease Control and Prevention's latest (September 1997) Guidance and Current Practice publications addressing HIV prevention case management underscores the need and current inadequacies surrounding evaluation of AIDS case management organization and programs. The nature of case management evaluation continues to endorse the assessment of agency performance in the five core components of case management: assessment, care planning, service linkage, monitoring, and advocacy. The evaluation of community programs funded by the Ryan White CARE Act continues to prioritize the structure and design of their program, the process or method by which the goals are achieved, and the


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outcomes or effects of the program on the served population. Some communities have developed basic self-study checklists and are implementing and monitoring these. Certainly, one simple recommendation would call for the compilation and distribution (royalty-free) of case management and Ryan White CARE Act program evaluation frameworks and protocols, particularly at key national and regional meetings as well as by fax request and Internet access. ROLE OF AIDS AND SOCIAL WORK EDUCATION The role of AIDS and social work education must be clear, compelling, and unambiguous. For the past four years, the Council on Social Work Education has worked to incorporate AIDS content in its annual program meetings and aggressively recruit manuscripts and articles for its journals and newsletters. The council has been virtually alone in promoting a social work response to HIV/AIDS. At Tulane University School of Social Work, Gary Lloyd and Valerie Gordon Garofalo have continued the arduous and time-consuming work of compiling, editing, and distributing social work HIV/AIDS bibliographies to social work programs. The response of the National Association of Social Workers has been particularly disappointing in this regard, relegating its response to an HIV/AIDS spectrum training project, which provides useful information but has very limited resources and is nearing the end of its three-year contract (1995-98). Still, the curricula developed by the project — an all-day HIV/AIDS curriculum and a half-day specialized curricula on HIV/AIDS and ethics, HIV/AIDS and mental health, and HIV/AIDS and substance abuse — could easily be adapted to fit existing social work curricula. The classes are effective, stand-alone, single sessions that could serve as modules in existing methods and elective courses. The training could also serve as a ready basis for a term-long course in HIV/AIDS. Within African-American social work organizations, the response has been extremely sparse as late as 1997. A review of conference bulletins shows only marginal attention given to HIV/AIDS between 1981 and 1997. It is interesting to note that as a direct result of the African-American Social Work Summit, the National Association of Black Social Workers convened a special series of preconference sessions on AIDS education at their 1998 annual conference in New Orleans, Louisiana. We hope this represents the beginning of a new and essential dialogue and action response for African-American social workers. The National Research and Training Center on Social Work and HIV/AIDS will also continue its

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efforts to push the profession to more fully address these critical issues. ADVOCACY AND POLICY PERSPECTIVE An African-American advocacy and policy perspective is essential. The silence of national African-American shapers of policy and advocacy has been deafening. The national institutes and legislators must be held accountable for past and current silence and future action by an informed electorate. In addition, local implementers of policy and advocacy may need to enhance communication networks and take community control, in the manner of the African-American social activist parties and unions of the 1940s through the 1960s. African-American community leadership and action yet again may need to be the vanguard of HIV/AIDS social policy and invite African-American national leadership to follow the lead of the community. FUTURE DIRECTIONS FOR RESEARCH Because research drives what is attempted as prevention, intervention, and treatment strategies, there are three essential elements that will be required if we are to be successful in the future in African-American communities: evaluation instruments sensitive to communities must be developed that consider the cultural mores as they pertain to sexual conduct, perception of illness, and level of self efficacy; small community agencies that appear to be successful in their efforts need technical support to evaluate their methods and the level of potential to replicate; and federal funding initiatives must develop and implement programs that will train more African-American researchers. CONCLUDING THOUGHTS The authors of these eight chapters remind us that HIV/AIDS is a formidable opponent and that as social workers, particularly African-American social workers, we must respond now. The consequences of inaction on these issues is the pervasive feeling of impotence and hopelessness within African-American communities. Fundamental ingredients for all prevention, intervention, and treatment programs should be approaches that will instill hope, strengthen competency and level of self respect, and


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utilize community networks to heighten the motivation to desire health. Providing education is not enough, passing out condoms is not enough, hiring indigenous people is not enough, supplying conventional medical therapies is not enough. One of the prerequisites to motivation to change is belief. Healing can take place only in the presence of desire and belief. African-American communities need something to believe in. A variety of issues were enumerated within this volume that confront and, at times, confound social workers working with African-American communities. There are four that have, up to this point, received cursory, if any, attention from service providers, researchers, policy makers, and educators: the impact of racism; the needs of women and children, both separately and as a unit; the hornet's nest of violence, drug and alcohol abuse, and HIV/AIDS; and the lack of clinical data regarding treatment regimes that affect African Americans. Racism The issue of racism continues to haunt the United States. It is seemingly as daunting to the psyche as AIDS is to the body. HIV/AIDS has uncovered the reality that African Americans continue to be seen as the extreme other. As social workers, our tradition speaks to our concrete concern with the investigation, treatment, and material and economic aid of the economically underprivileged and socially disenfranchised. Although there are African Americans who are no longer economically underprivileged, as long as racism exists all African Americans will remain socially disenfranchised. HIV/AIDS creates the opportunity to evaluate and interrogate the health service delivery system, including the prevention messages, the intervention strategies, and methods of treatment employed. It stands to reason that beliefs held about the character of a community or the value ascribed to a community will influence the sanctioned attitude of the service delivery system. Social workers can help explore the insidious manner in which racism infects social service and health care provisions. Social work researchers must work to develop alternative epistemologies that include racism as a variable in the ability to prevent, intervene, or treat HIV/AIDS and in the acceptance of strategies used by AfricanAmerican communities.

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Women and Children Public health officials project that there will be 75,000 to 125,000 motherless children in the United States because of AIDS by the year 2000, and 90 percent will be African-American and Latino. Female AIDS cases continue to soar, with African-American and Latino women constituting 77 percent of those cases although they comprise only 19 percent of the total number of women in the nation. Many of these women are poor. Many African-American children face multiple risks. They may be infected at birth; orphaned during childhood; infected during the course of their adolescence; or they will maintain optimal physical health but will live in the midst of destruction, dying, and death. How does a child overcome this scenario? What is the long-term impact of this traumatic condition? How does a child heal in the midst of a war zone? We have merely scratched the surface with the recent attention given to African-American children. An entire generation may be lost. These children need social workers that will care for them and advocate for them. They deserve more than food, clothing, and shelter; they need tender loving care. Poverty intensifies other social issues (domestic violence, drug and alcohol abuse, inadequate health care, homelessness, hunger, sexual exploitation) that prevailing methods of HIV intervention and prevention programs do not address. By not addressing the reality of poor women and children, arming the women with only latex condoms and the children with foster care as their only option, service providers further jeopardize their ability to remain safe. Violence, Drug Abuse, and HIV The triad of violence, drug abuse, and HIV has not been addressed adequately in prevention and intervention programs. The combination of any of these would undoubtedly be a disruptive and traumatic experience that poses serious challenges for the affected individual and the care providers. It is difficult to tease out which of the triad is the nucleus of the problem. However, does it really matter? African-American communities have been plagued with drug and alcohol abuse for several decades with little or no assistance to combat them in any meaningful way. The upsurge of violence could have been (and probably was) predicted given the economic and environmental complexities in many African-American communities.


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The triad has consumed some African-American communities so extensively that disaster relief is warranted in order to reconstruct them. Service providers, researchers, and politicians must include the factors associated with each of these issues together. It is reprehensible to continue this fragmented approach to eliminating each of these issues from African-American communities. Genocide is not just a word, it is a reality if what is offered excludes crucial aspects of the environmental context. Instead of the current funding and programming scheme that perpetuates the separation of issues and interests, would it not be more cost-effective to try a multidisciplinary approach? Clinical Data The new wave of therapy using drugs known as protease inhibitors has been a blessing and a curse. It is a blessing in that those who can afford it have access to it and a curse for so many who cannot afford it. There needs to be more information regarding the effect of protease inhibitors on African-American people. There is no conclusive data to date as to what differences there may be between African Americans and European Americans or women and men. More clinical trials need to include African Americans in them. These trials must be cognizant of the historical legacy left to African-American communities by the Tuskegee Experiment. Researchers cannot expect communities that have been exploited to welcome them with open arms. We must cease empty rhetoric about prevention in African-American communities. There have been some creative, culturally sensitive approaches, as in the Harlem United model described in this book. It is not enough. The number of African Americans who are newly infected and minimally served continues to grow. The Invisible Man We cannot continue to talk about African-American communities without acknowledging all members of the family unit. When we talk of AIDS, certain groups are considered, for example, men who have sex with men, IDUs, women, and children. Where are the men? That is the hue and cry of many sisters. How can we continue to talk about HIV and AIDS and not address — no, not even mention — the heterosexual men who are the fathers of those about whom we profess such concern, that is, the affected children and the AIDS orphans, the partners and husbands and lovers of women in poverty, the sons and grandsons of the affected elderly?

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We must address the issues for and needs of African-American men who are heterosexual, otherwise they will continue to be at great risk. We also need heterosexual African-American men to speak out about that risk and about this disease. We cannot buy into the mainstream thinking about black men, who are controlled by any means necessary. They are feared and despised, shackled, bridled, killed, and taught to kill. They are incarcerated in staggering numbers, dead before their time, victims of senseless killings. When are we going to embrace all of our brothers? Consider systems that are not necessarily HIV-related. The government can create and sustain entire entities, that is, the Bureau of Maternal and Child Health, and not include the fathers and partners of the mothers and children in the mission or in the service delivery design. Advocates for those who have been impacted by domestic violence have created a much needed service delivery system without much thought about healing for those who abuse. What is their message? Why do we mimic them by excluding heterosexual black men from our outreach, service delivery, and prevention designs? African-American women are getting pregnant by men. AfricanAmerican children have fathers. Not all of these men are men who have sex with men or IDUs, and to assume so is short-sighted and prejudicial. At the very least, we need to be targeting prevention efforts to address the myriad needs of men who deny, in their manhood, that they are not at risk. Call and Response — Revisiting Our Spirit We must use the devastation wrought by this disease in our communities as a wake-up call about how we are to treat each other. We are quick to point to those with influence in our communities who are silent. They need to be accountable. However, it is time for those of use who have worked in the HIV/AIDS arena to stop and examine our own hearts. We believe that we must face our fears, acknowledge our prejudices, and resolve to stop the blaming, shaming, and judging by distancing ourselves from those who are different. If this sounds familiar, it is because we have insisted that others distance themselves from marginalized people living with HIV/AIDS who have been further alienated by the judgment of their lifestyles. We have, in turn, judged and alienated those, in many cases our own people, who have not been able to see the issue clearly because we have obscured the issue about HIV/AIDS. By following our white counterparts, we have used the HIV platform to promote issues for those who are gay, lesbian, bisexual, transgendered, and questioning. Certainly all people who are judged and discriminated against are worthy of our attention as


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human beings and as social workers, however, we must acknowledge that we who work in HIV and AIDS need a different approach. We cannot fight fire with fire. People are not going to respond to the call to change if they are also being judged. We must work to be as respectful of all persons, even when — especially when — their beliefs and values differ from our own. We can learn to heal. We can learn to treat them with compassion; we can love them despite the unloveableness of their prejudice. The truth is, we need them to join us in this fight so that our people, feeling unheard and rejecting our gay-oriented approach, do not continue to see AIDS as someone else's issue. A house divided against itself cannot stand. It is time to embrace all of our people and to hear their concerns. Homophobia is an overused word. I have talked with African Americans who deny homophobia, that is, fear of homosexuals. They come from a different place — years of indoctrination, religiously applied. They firmly believe that homosexuality is wrong, is unnatural, is a sin against God. They have been taught that, and they believe it. What would we do with a client with an entrenched belief system that is so different from ours? We would endeavor to see him, hear him, support him, not judge him. We all have a right to be here. Let us work with the resistance. We do not need increasingly staggering numbers of HIVinfected African-Americans in the United States before we realize that we need to act differently. We can lead our brothers and sisters by precept and example. As they see what we believe and feel respected for who they are, regardless of what they believe, we may see different results. If I am OK with me, I have no reason to make you wrong. Let us get right in the sight of our creator and clear our own channels so that we can see clearly the work that needs to be done with compassion. That is the loving, spirit-filled approach worthy of consideration in the quest for healing for a traditionally spiritual people. We are a complex and diverse people: many hues and colors, rich and textured cultures and subcultures, diversity of beliefs and customs and attitude and values. Some of us have had more opportunities than others. We live in and come from varied places. What unites us as a people is that we have endured the diaspora as well as slavery, which ripped from us our sense of belonging, obscured the richness of our heritage, separated our families, and destroyed our sense of community. We have endured the indoctrination that teaches us that we are inferior to white people and that, moreover, we are subhuman and not worthy of what is good and lovely and pure. That indoctrination overtly and subtly taught us to hate ourselves and each other, a hate often disguised as fear of each other. These

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have been factors in the history and condition of the community of African peoples born in and living in the United States. We assert, however, that in order to capture the diversity among us, we consider the term "African-American communities" to reflect the diversity among our people and, thus, realize the need for diverse approaches and strategies for intervention. These can be developed only after an acknowledgment of and attendance to the myriad feelings and issues that are faced by black social workers, as people and as professionals, on a daily basis. We are past the point at which it is useful to be angry about the silence, and it has never been helpful to judge anyone for anything, although much of that has been done. It is time to seek to understand from those sectors of the social work community that we deem silent how it is that they see their response (or lack of it) to the plight of African Americans with regard to this disease. Several issues come to mind when considering the issues of silence of professionals in the various aspects of the field of social work. For example, there is a need for a commitment to an action plan that has innovative approaches in the areas of prevention, practice, and policy. Social workers in all spheres and at all levels need to be brought on board. In order to interest people in the issues and add to the ranks of those who will join the cause, we need a unique approach. The approach should be: Engaging. The invitation to the meeting should be something that captures the attention and interests. Perhaps a personal appeal to do something to save our communities is in order. Nonjudgmental. We must avoid the use of such terms as "black indifference." Inclusive. We are all in this together now, regardless of where we have been on the issues. It is time to come together and reason about this killer of our people. Sensitive. We need to create safe space as a catalyst for sharing concerns, myths, fears, and so forth. Informative. We must present facts about the disease, its transmission, the scope of the problem, and the forecast for our communities. The point needs to be made that AIDS is no respecter of persons in certain classes or categories. It affects us all. Contextual. This means we need an approach that puts HIV in several contexts with which people can more readily identify. Contexts such as: The experience of being African American. Discuss the difficulties of that experience by itself and then add AIDS. Present this in such a way that participants can see the high numbers of African Americans being affected by and, therefore, needing to respond to yet another social ill.


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Racism and ignorance. Present an overview to which all can relate, with specifics as to how this evil is played out in the HIV arena. Internalized oppression. This issue needs to be raised thoughtfully and skillfully and exposed for the significant, often subtle or silent, role that it plays in all our personal and professional affairs. Long before there was HIV, there was divisiveness on many issues, dating back to and promoted by the institution of slavery and perpetuated in public policy today. We believe that African-American people, in general, and social workers, in particular, need help to see this larger picture — that our hatred of ourselves and each other is part of a carefully designed plan to divide us. The very personal nature of AIDS. Its correlation with poverty, drugs, and homosexuality will likely evoke strong sentiment that has been nourished by personal values. By this time in the phase of the epidemic many have had the experience of knowing someone who has died of complications of the virus. Unfortunately, it is still associated, in many cases, with behaviors people hate or to which they cannot relate. We will need to challenge thoughts and feelings, helping helpers to shift their paradigm and not buy into negative valuation of our own. In summary, in addition to providing medical, psychosocial, and public policy knowledge, it is essential to address the underlying issues of values about drugs, poverty, sex, homosexuality, fidelity in relationships, religion and spirituality, and so forth to safely penetrate the psychological barriers to involvement in the issues. Hopefully, this will enable practitioners to get past the resistance and get down to the business of saving our communities from further destruction or at least slowing the pace at which communities are being decimated. REFERENCES Amo, P., & Frieden, K. (1992). Against the odds: The story of AIDS drug development, politics and profits. New York: HarperCollins. Blake, D. (1993). AIDS: Epidemiology and the international response. Tropical Medicine and Parasitology, 44, 130-134. Boyd-Franklin, N., Steiner, G., & Boland, M. (Eds.). (1995). Children, families and HIV/AIDS. New York: Guilford Press. Burkett, E. (1995). The gravest show on earth: America in the age of AIDS. New York: Picador Press. Cameron, T. (1994). Children orphaned by AIDS: Providing homes for a most vulnerable population. AIDS and Public Policy Journal, 9, 29-35. Centers for Disease Control and Prevention. (1997a). HIV prevention case management: Guidance. Atlanta, GA: Centers for Disease Control and

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Index

Abuse: and HIV/AIDS, 4, 17-18, 40; as spiritual wounding, 17-18 Addiction, 38-39 Africa, HIV/AIDS in, 87, 92-93 African-American children, HIV/AIDS among, 14-15, 37, 89, 146, 147 African-American churches, 46-47; and HIV/AIDS, 7-8, 13-14, 43-45, 65, 76, 82, 83-84 African-American HIV/AIDS Leadership, 120, 126 African-American HIV Prevention Conference (Atlanta, Feb. 1998), 121-23, 125-26 African-American men, special issues for, 28-31,57, 147-48 African Americans: AIDS as leading cause of mortality among, 5; alcoholism among, 53; attitudes toward HIV/AIDS among, xiii-xiv, 8-10, 13-14, 49-50, 53, 54-55, 56-58, 59-60, 126, 141; belief in conspiracy of genocide, 9, 51, 53, 59,

86-87; and case management, 5-6, 142; child rearing among, 19-21; classism among, 91; concept of the extended family among, xii, 32, 46-47; distinguished from blacks, 105; distrust of health care services among, 50-51; drug addiction among, xiii, 3-4, 24, 50-51, 146-47; family problems among, 28-31; HIV/AIDS among children, 3, 14-15,37,50,89, 141, 146, 147; HIV/AIDS among women, 3-4, 14, 50, 141, 146, 147; HIV/AIDS incidence among, ix-x, 2-5, 50, 52, 63-65,81,82,94,106, 125,140, 146; HIV/AIDS intervention with, 49-61, 65-71, 85-86, 90, 91-92, 104, 105-6, 128-29, 141-42; HIV/AIDS policy and advocacy strategies, 88-94; homophobia among, xiii-xiv, 7, 13-14, 54, 64, 65,85-86,91, 121, 122, 123, 130, 149; local responses to HIV/AIDS, 83, 84-86, 93-94; mental health

156

Index

concerns among, 23-25; myths regarding HIV/AIDS and, 2-10; poverty among, xiii, 4, 15, 17, 21-22, 50-51, 52-53, 65, 91, 121, 122, 130, 146; and protease inhibitors, 147; and racism, xii, 22, 24,29,31,32-33,65, 121, 123, 145, 151; response to HIV/AIDS from national organizations of, 9, 81-84, 86, 144; services available for AIDS patients among, 5-6, 49; sexism among, 91, 121, 122; and slavery, 19-23, 32, 45-46, 149-50, 151; social work among, 23-25, 59-61, 144-51; as social workers, xii-xiii, 18,31-36, 119-38, 144-51; socio-economic conditions of, xiii, 1-2, 17,26-28,50-51, 52-53, 57-58, 59-61, 67--68, 105-6, 121, 122, 130, 151; special issues for men, 28-31, 57, 147-48; spirituality among, 42-47; spiritual woundedness among, 18-22; stereotypes of, 1, 54; violence among, 4, 146-47, 148. See also Harlem United Community AIDS Center; National Social Work Leadership Summit Meeting on HIV/AIDS and African Americans African-American social workers, xii-xiii, 18,31-36, 119-38, 144-51; importance of spirituality for, 18; special issues for, 31-36 African-American Social Work Leadership Summit on HIV/AIDS. See National Social Work Leadership Summit Meeting on HIV/AIDS and African Americans African-American women, 14, 147; and HIV/AIDS, 141; HIV/AIDS incidence among, 3, 50, 146; and injection drug users, 3-4 African Heritage in Black American Churches, 45

AIDS. See HIV/AIDS AIDS and Social Work Issues Conference, 85 AIDS in Black Communities, 86-87 Alcoholism, 24, 64; among African Americans, 53 All Afrikan American Peoples' Revolutionary Party, 84 American Medical Association, 90 American Psychological Association, 90,92 Annual Conference on Social Work and HIV/AIDS, 127 Association of Black Psychologists, 90,92 AZT: African clinical trials of, 87, 92-93; as HIV/AIDS treatment, 89 Black Rage, 24 Blacks: distinguished from African Americans, 105; HIV/AIDS incidence among, 106; HIV/AIDS intervention with, 104; socio-economic conditions of, 105-6 Bureau of Maternal and Child Health, 29, 148 Burkett, Elinor, 89 Case management and African Americans, 5-6, 142 Centers for Disease Control and Prevention (CDC), 3, 67, 92-93, 123, 142 Changing HIV Risk Behavior: Practical Strategies, 55-56 Child rearing among African Americans, 19-21 Children, African-American, HIV/AIDS among, 14-15, 37, 89, 141, 146, 147 Christianity, 43-44 Churches, African-American, 46-47; and HIV/AIDS, 7-8, 13-14, 43-45, 65, 76, 82, 83-84

Index Cobbs, P. M., 24 Combination therapy, 141 Condom use, 9, 55, 56-57, 64, 69, 101, 140, 146 Congressional Black Caucus, 82 Council on Social Work Education, 143 Countertransference, 26, 34 Crack cocaine, xiii, 24, 39 Dalton, Harlan, 90 Djawotho, K., 45 Drug addiction: among African Americans, xiii, 3-4, 24, 50-51, 146-47; and HIV/AIDS, 53-54, 64-65; and spirituality, 37-41; 12-step program in treating, 41-42; in U.S., 38 Duh, Samuel, 86-87 Evaluation of HIV/AIDS services, 99-115, 142-43; absence of literature on, 104, 115; data analysis, 114; data collection, 113-14; definition, 102; design, 110-13; and social work, 101-4; theoretical perspectives on, 104-5; types of, 107-10 Ferajaje-Jones, Elias, 127-28 Fullilove, Mindy, 90 Fullilove, Robert, 90 Fulwood, P. Catlin, 127 Gant, Larry M., 127, 133 Garofalo, Valerie Gordon, 143 Gay Men's Health Crisis (GMHC), 72,75 Gay white men: and HIV/AIDS, 5-6, 13, 58, 59, 66, 75, 87, 106; in New York City, 63, 65; services available for AIDS patients among, 5-6 Green, Willis, Jr., 127, 133 Grier, W., 24

157

Harlem Directors Group, 73-74, 79 Harlem United Community AIDS Center, 64, 66, 147; constructs Adult Day Health Center (ADHC), 67-68; fund raising for, 76-77, 79; HIV/AIDS prevention programs at, 69-70; management of, 77-79; principles of, 71; relations with other organizations, 71-76; services provided by, 67-71 Harvard AIDS Institute, ix-x, 127 Hill, Robert, 86 Hispanics. See Latinos HIV/AIDS: African-American attitudes toward, xiii-xiv, 8-10, 13-14, 49-50, 49-50, 53, 54-55, 56-58,59-60, 126, 141; and African-American churches, 7-8, 13-14, 43-45, 65, 76, 82, 83-84; African clinical trials of AZT, 87, 92-93; AIDS as leading cause of mortality among African Americans, 5; among African-American children, 14-15, 37, 89, 141, 146, 147; among African-American women, 3-4, 14, 50, 141, 146, 147; among people of African descent, 92-93; and categorical funding for care, 91; challenges for an AfricanAmerican response to, 120; and childhood sexual abuse, 18, 40; and drug addiction, 53-54, 64-65; educational programs, 9, 140; evaluation of services, 99-115, 142-43; future research, 144; and gay white men, 5-6, 13,58,59,66,75,87, 106; as genocidal conspiracy, 9, 51, 53, 59, 86-87; HIV transmission, 3-4; incidence among African Americans, ix-x, 2-5, 50, 52, 63-65,81,82,94, 106, 125, 140, 146; incidence among blacks, 106; incidence among Latinos, ix-x, 3, 63-65, 146; incidence among white

158

Index

Americans, ix-x; and injection drug users, 3-4, 9, 14, 36-41, 53-54, 87, 140, 141; intervention with African Americans, 49-61, 65-71, 85-86, 90,91-92, 104,105-6, 128-29, 141-42; intervention with blacks, 104; intervention with Latinos, 65-67, 104; intervention with men who sleep with men (MSMs), 66; local responses of African-Americans to, 83, 84-86, 93-94; and men who sleep with men (MSMs), 64-65, 69; models for prevention/intervention, 55-56; myths regarding African Americans and, 2-10; needle exchange programs, 9, 53-54, 140; policy and advocacy strategies, 88-94; research and racism, 58-59, 61; response of national African-American organizations to, 81-84, 86, 144; safer sex, 52, 55, 56, 70, 75, 87, 140; and social work education, 143-44; social work with patients, 23-25, 26-28; and socio-economic conditions, 4; spirituality in treating patients with, 15-16; transmission of, 87; treatment for, 89-90, 139-40, 141; U.S. attitudes toward, 13-14, 36-37; and women who sleep with women (WSWs), 69. See also Harlem United Community AIDS Center; National Social Work Leadership Summit Meeting on HIV/AIDS and African Americans HIV Planning Council (New York City), 74-75 HIV Prevention Conference (Atlanta, Feb. 1998), African-American, 121-23, 125-26 Homophobia among African Americans, xiii-xiv, 7, 13-14, 54, 64, 65, 85-86,91,121, 122, 123,130, 149

Housing Opportunities for People with AIDS, 6 Humphrey, John, 93 IDUs. See Injection drug users Immunix, 89 Injection drug users, 147, 148; and African-American women, 3-4; and HIV/AIDS, 14, 36-41, 53-54, 87, 141; HIV/AIDS incidence among, 3-4 Jackson, Derrick, ix Jemmott, John, 85-86 Jemmott, Loretta Sweet, 85-86 Joint Center for Political Studies, 82 Kaiser Family Foundation, 8 Kelly, J. A., 55-56 Kemron, controversy over, 81, 84, 89-90 Kwanzaa, principles of, 80 Latinos, 33; attitudes toward homosexuality among, 64; HIV/AIDS incidence among, ix-x, 3, 63-65, 146; HIV/AIDS intervention with, 65-67, 104; homophobia among, 65; poverty among, 65; socio-economic conditions of, 67-68 Lloyd, Gary, 143 Lynch, Vincent J., 124, 127 Malcolm X, 93 Managed care, 91 Mann, Jonathan, 6 Marin, Barbara V., 104, 141-42 The Measures for Clinical Practice, 112 Medicaid, 67, 68, 91 Men, African-American, special issues for, 28-31, 57, 147-48 Men, gay white: and HIV/AIDS, 5-6, 13, 58, 59, 66, 75, 87, 106; in New

Index

159

York City, 63, 65; services available for AIDS patients among, 5-6 Men who sleep with men (MSMs), 14, 64-65, 147, 148; and HIV/AIDS, 69; intervention with African-Americans, 66; prevention programs aimed at, 70

Peck, M. Scott, 16 Philadelphia, 22, 31,46 Poverty: among African Americans, xiii, 4, 15, 17,21-22,50-51, 52-53,65,91,121,122, 130, 146; among Latinos, 65 Protease inhibitors, 147

National AIDS Fund, 88 National Association for the Advancement of Colored People, 83 National Association of Black Social Workers, 84, 143; Code of Ethics, 32, 47 National Association of Social Workers, 143; Code of Ethics, 25-26 National Institutes of Health, 92-93 National Medical Association, 90 National Research and Training Center on Social Work and HIV/AIDS, 143-44 National Social Work AIDS Network (NSWAN), 75-76 National Social Work Leadership Summit Meeting on HIV/AIDS and African Americans, xi, 85, 119-38, 143; action plans developed at, 124; agenda of, 133-35; challenges for an African-American response to HIV/AIDS determined at, 120; conclusions of, 122-24; keys points identified at, 128-29; list of participants at, 135-38; mission statement at, 120, 126; objectives of, 119-20, 125, 133; small groups at, 120-21, 129-33 National Urban League, 83 Nation of Islam, 84 Needle exchange programs, 9, 53-54, 140 New York City, 63, 65, 66-67, 74-75, 79 New York State Department of Health, 79

Quansah, K., 45 Racism: and African Americans, xii, 22, 24, 29, 31, 32-33, 65, 121, 123, 145, 151; in HIV/AIDS research, 58-59, 61; and spirituality, 16-17; in U.S., xii, 15 Reclaiming the Urban Family, 46 Richardson, Willie, 46 Ryan White Comprehensive AIDS Resources Emergency Act of 1990, 6,58,74-75,91, 140, 142-43 Safer sex, 52, 55, 56, 70, 75, 87, 140 San Francisco, 4 Seattle, 4 Sexism among African Americans, 91, 121, 122 Slavery and African Americans, 19-23, 32, 45^6, 149-50, 151 Smith, Mark, 88 Social work: African Americans in, xii-xiii, 18,31-36, 119-38, 144-51; among African Americans, 23-25, 59-61, 144-51; among HIV/AIDS patients, 23-25, 26-28; and evaluation of HIV/AIDS services, 101-4; HIV/AIDS and education in, 143-44; spirituality in, 25-26, 42, 80; values and principles of, 25-26 Social Work Abstracts, 104 Southern Christian Leadership Conference, 83 Spirituality: abuse as spiritual wounding, 17-18; among African

160

Index

Americans, 42-47; and drug addiction, 37-41; importance for African-American social worker, 18; and racism, 16—17; in social work, 25-26, 42, 80; spiritual woundedness among African Americans, 18-22; in treating patients with HIV/AIDS, 15-16 Springer, Edith, 38 Stewart, Patricia A., 127, 133 Transference, 26 Tuskegee Syphilis Experiment, 51, 56, 147 12-step program in treating drug addition, 41-42 United States: addiction in, 38-39; attitudes toward HIV/AIDS in,

13-14, 36-37; drug addiction in, 38; failure to ratify World Declaration of Human Rights, 93; HIV/AIDS incidence in, ix-x, 3; racism in, xii, 15 War on Poverty, 102 Wheeler, Darrell P., 127, 133 Women, African-American, 14, 147; and HIV/AIDS, 141; HIV/AIDS incidence among, 3, 50, 146; and injection drug users, 3-4 Women who sleep with women (WSWs): and HIV/AIDS, 69; prevention programs aimed at, 70 World Declaration of Human Rights, 93 Wright, Ednita M., 127, 133

About the Contributors All contributors to this volume serve as Associates of the National Research and Training Center on Social Work and HIV/AIDS located at Boston College Graduate School of Social Work. They are also officers and members of the National Social Work AIDS Network. Larry M. Gant is Associate Professor, University of Michigan School of Social Work. He is extensively involved in the development and transfer of community-based psychosocial intervention in HIV/AIDS care. He collaborates closely with community-based organizations, hospital-based projects, and local and state departments of public health to develop enduring ties between the university and the broader community. He is a member of several national boards concerned about HIV/AIDS issues including the National AIDS Fund and the National Hemophilia Foundation. Willis Green, Jr. served as Executive Director of Harlem United Community AIDS Center in New York at the time of his death in December 1997. His career as a professional social worker encompassed work at a number of organizations over the past two decades including the AIDS Resource Center in New York, Queens Child Guidance Center, and the American Orthopsychiatric Association. He was also past president of the National Social Work AIDS Network and a member of many professional

162

About the Contributors

organizations including the Organization of Black Agency Executives and the HIV Planning Council of New York City. Vincent J. Lynch directs the National Research and Training Center on Social Work and HIV/AIDS at Boston College Graduate School of Social Work. He serves on several national editorial boards and organizational boards associated with HIV/AIDS care. In 1988 he founded the Annual National Conference on Social Work and HIV/AIDS, which he still chairs. He is recipient of the Council on Social Work Education's 1998 Distinguished Recent Contributions to Social Work Education Award. He has served as co-editor of The Changing Face of HIV/AIDS: Implications for Social Work Practice and Caring for the HIV/AIDS Caregiver. Patricia A. Stewart has been a professional social worker for more than 25 years with experience as a clinician and administrator in child welfare, medical social work, and HIV/AIDS care. She serves on the boards of the AIDS Law Project of Pennsylvania and the National Social Work AIDS Network. She has designed and facilitated many HIV/AIDS conferences throughout the country over the past ten years. As an adjunct faculty member at LaSalle University in Philadelphia she teaches an HIV/AIDS course in the Social Work program there. Darrell P. Wheeler is Assistant Professor, Columbia University School of Social Work. His research is in the area of methodologies and designs for assessing programmatic efficacy, especially in human organizations that serve racial and ethnic minorities. He holds advanced degrees in public health as well as social work and has previous direct practice experience in mental health, HIV/AIDS education and prevention, and maternal and child health care planning. He is past president of the National Social Work AIDS Network. Ednita M. Wright is Assistant Professor, Syracuse University School of Social Work. Her research is in understanding the lives of African-American women with HIV/AIDS. She is interested in coping strategies and the role of spirituality in these women's lives. Wright has received numerous community awards and, in 1996, was given the Social Worker of the Year award by the National Association of Social Work's Central New York Region chapter. She has worked in the addictions field for more than 20 years and has consulted nationally and internationally on issues of cultural diversity, addiction, domestic violence, and infant mortality.

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