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Why Every Social Worker Should Be Challenged by AIDS

1990

It is safe to say that if it has not already done so, Acquired Immune Deficiency Syndrome (AIDS) will touch the professional lives of almost all contemporary social workers before they retire. The number of cumulative AIDS cases in the United States alone by the end of 1989 is estimated to exceed 100,000, and, at the end of the next 2 years, between 300,000 to 400,000. It is estimated that there are more than 1.5 million people in the United States infected with human immunodeficiency virus (HIV) (Heyward & Curran, 1989), and this number is still growing. The worried, the ill, the dying, and the bereaved will occupy social workers' caseloads and continue to touch their personal lives as well. Whole families of intravenous drug users are becoming infected and dying (Leery, 1989; Williams, 1989); orphaned children with AIDS languish in inner-city hospitals; gay men die; elderly parents grieve for sons, daughters, grandsons, and granddaughters; and agency staffs are immobilized by the illness of a social work colleague repeatedly hospitalized for one opportunistic infection after another. No setting in any region of the United States will be spared by the pandemic of AIDS that will continue into the next century, according to all the best estimates.

Social Workers as Pioneers

This profession can be justly proud of the often pioneering work done by social workers from the onset of the AIDS health crisis in developing psychosocial services of singular diversity and effectiveness that reach out to people infected and affected by HIV. Even before the significance of HIV was known and complete knowledge of the modes of transmission was verified, social workers began to make important contributions to all professionals' understanding of AIDS.

AIDS Work and the Social Work Tradition

The history of social work and the profession's innovations during the Progressive Era and the New Deal under the leadership of Jane Addams, Lillian Wald, Florence Kelley, Harry Hopkins, and Frances Perkins resulted in the creation of settlement houses, playgrounds, child labor laws, visiting nurses, maternal health clinics, social security, and labor legislation. This tradition was very much in evidence as social workers like Diego Lopez in New York, Judy Macks in San Francisco, Caitlin Ryan in Atlanta, David Aronstein in Boston, Bill Scott in Houston, and Anthony Hillin in London pioneered the design and delivery of the first psychosocial services for people affected by AIDS.

These early efforts by social workers, in many cases serving as unpaid volunteers, demanded that people with AIDS have their food trays brought into their rooms, instead of having the trays placed outside their hospital room doors, or not be left to wallow in their own excrement when nursing staffs were too fearful to change the linen. Edith Springer, a professional social worker and recovering narcotic addict pioneered AIDS prevention outreach to intravenous (IV) drug users by teaching them how to clean needles and use condoms in the crack dens and shooting galleries found in abandoned buildings in the Lower East Side of Manhattan (Evans, 1987; Morgan, 1988). The author and a colleague developed and disseminated a radical yet effective approach for AIDS prevention for gay and bisexual men through eroticizing safer sex currently used all over the world (Palacios-Jimenez & Shernoff, 1986; Shernoff & Palacios Jimenez, 1988).

Clearly, much remains to be done, and social workers continue to make important contributions in their agencies when they recognize the challenge of AIDS. For example, one social worker in an agency for the blind reached out to people with AIDS whose sight was affected by the opportunistic infection of cytomeglovirus retinitis (Gross, 1988). Braille training brings dignity and comfort to these clients, even though their lives are foreshortened by HIV disease.

Hospital social workers are often the first to see AIDS in a community, if people with AIDS have not reached out previously to a local AIDS service organization. More than 80 percent of women with AIDS are black or Hispanic, and more than 90 percent of all children with AIDS are black or Hispanic from inner-city areas where the source of HIV infection is IV drug use (Williams, 1989). Poor people, women, children, and addicts are more apt to use the hospital emergency room for primary medical care, arriving there in desperation and in run-down conditions with severe HIV symptoms or one of the opportunistic infections associated with a diagnosis of full-blown AIDS.

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AIDS tests the mettle of social workers in health care settings, whose tasks may include assisting parents through the crisis when they learn simultaneously that their son is gay and is dying from AIDS; helping a woman examine the possible consequences to herself and her child on discovering that her bisexual husband has AIDS; helping pregnant women with AIDS who have one or more children already dead or dying and who hope that this baby will be born uninfected; teaching adolescents in a family planning clinic that sexual activity must also include the use of condoms to prevent transmission of HIV; counseling newly diagnosed gay men with AIDS who are already overwhelmed taking care of dying lovers.

Social Injustice and AIDS

AIDS has exposed previously invisible faults in our social and economic order by pointing out the tragic inequities that exist in health and social services. The poor are less apt to know about or use advanced expensive medical procedures and participate in experimental drug trials (Kirby, 1989; Lee, 1989). Poor people who get AIDS -- mostly IV drug users and inner-city minority people -- generally lack private health insurance and access to university medical centers where the experimental treatments are being offered. Consequently, poor people and other disadvantaged people with AIDS tend to live a shorter time and in a more debilitated state of well-being, in physical environments that foster further decline and early deaths from infection (Kolata, 1987; Rothenberg et al., 1987). In contrast, many middle-class gay men with AIDS now live for more than 7 years following a diagnosis of AIDS.

The benefits of azidothyrnidine (AZT) and aerosol pentamidine in slowing the HIV infection and preventing pneumocystis has not been realized fully because of the slowness of Medicaid providers to accept the use and cost of newer lifesaving and life-enhancing treatments. How many poor people can afford drugs like AZT that cost $600 to $800 per month? Is our society prepared to write off poor people as not worthy of life -- a benefit only bought by well-to-do people? Are there ethical constraints on this rationing that will, no doubt, grow as a policy consideration? Because of their central positions in delivering services to people with AIDS in the inner city and elsewhere, social workers will continue to have crucial roles advocating decent care from the health care team, and they must vigorously defend services against cutback decisions made by planners and politicians. Social workers in community organizations must continue to hold large providers like Medicare, Medicaid, and private health insurance companies to the highest standards of equity for all people with AIDS.

AIDS poses challenges to all aspects of professional social work by providing the opportunity to work with some of the most disenfranchised and despised segments of our society. This includes urban poor IV drug abusers, homeless people who are HIV infected, and sexual minorities. These opportunities challenge professionals to rise above their bigotries about "junkies" and "faggots" and learn to see clients as people who are ill and in need of empathy, compassion, and most importantly, professional expertise.

Social workers working with people with AIDS need to ask themselves if their skills are blocked by blaming people with AIDS or their life-styles -- in effect blaming the victim. Distinguishing life-styles from the viruses and bacteria that cause disease is, for some, an overwhelmingly high barrier to cross. Simple professional ethics and humanity require such a leap.

Shame and AIDS

My brother died of AIDS 4 years ago. Our parents were so deeply ashamed of the fact that he had AIDS they told everyone he had lung cancer. Technically this was true, because he had Kaposi Sarcoma of the lungs. But their shame, both for themselves and for him, compounded the medical and personal tragedy. As Elie Weisel once said about victims of any tragedy who suffer in silence, "What made their being most unique was something they hid. That is most tragic -- to suffer and then to suffer for having suffered." Social workers, trained to listen and encourage clients to speak of their pain and suffering, can do a great deal to ease the isolation and suffering that accompany the stigma and shame of this illness for individuals and their loved ones.

AIDS Practice and Challenging Stereotypes

Meeting the AIDS challenge professionally means carefully assessing clients to see them as individuals and not categorize them as being "at risk" or "not at risk." Because anyone may become infected with the virus that causes AIDS, assumptions should not be made about a client's risk status for HIV infection. The heterosexual married man with children may also have a history of having sex with men. The stereotype of people shooting drugs is that they are poor or from the inner city. Yet, middle class and wealthy people also shoot drugs and share drug-using apparatus, risking HIV transmission. Lesbians, supposedly the lowest-risk group for AIDS, may have a history of having male lovers, or they may have shot drugs and even worked as a prostitute at some point in their lives, thus risking HIV exposure.

A dying young person can challenge personal and societal myths of immortality and what constitutes a good death. AIDS challenges social workers to change themselves by dealing with feelings about pain, illness, death, and the illusion of personal immortality. To continue doing AIDS work social workers must receive skilled supervision; they must have access to AIDS support groups and periodic retraining, and at times, a collegial embrace after suffering the loss of yet another beloved client.

Challenging Hopelessness and Barriers to Good Practice

Social workers need to be prepared to empower ill and dying clients by maximizing their options to live and to die how they want to. To accomplish this crucial clinical task with clients, professionals must feel empowered in their work. False barriers can get in the way of reaching out empathically to clients. Social workers erect these barriers for many reasons: perhaps the worker is heterosexual, and the client is gay; or the worker does not shoot drugs, and the client does; or the worker is not poor, black, or Hispanic, and the client is; or the worker does not have a life-threatening illness, and the client does. As Harry Stack Sullivan noted, people are more similar to each other than dissimilar. Social workers are challenged to let go of the need to feel different from people who have AIDS.

Many people with AIDS are living longer and with a better quality of life than they might have a few years ago. Social workers must learn how to empower clients with hope amid their illness. The hope may not be only for a cure, but to stay healthy long enough for the next generation of medical breakthroughs to occur. More time allows social workers to encourage people with AIDS to hope for and work toward improved relationships with estranged family members or friends.

Social Work Practice on the Cutting Edge

AIDS work challenges all social workers to contribute to human betterment through their professional excellence. But, from a selfish perspective, this work rewards each person who engages in it by opening up some of the most profound questions of human existence pertaining to the value of life and relationships, and how one chooses to live. Working closely with people who have a life-threatening illness allows social workers to expand their sense of the preciousness of life.

Lesbian and gay social workers have been largely the vanguard of providers since the onset of AIDS and can no longer do it alone. Many of the earliest social workers involved in AIDS work are now sick or have died. The fight for sensitive and effective services for all people with AIDS now requires the help of every social worker in the United States.

Robert F. Kennedy once said:

"Let no one be discouraged by the belief there is nothing one person can do against the enormous array of the world's ills, misery, ignorance, and violence. Few will have the greatness to bend history, but each of us can work to change a small portion of events. And in the total of all those acts will be written the history of a generation."
(Remarks made at University of Capetown, South Africa, June 6, 1966.)

Each social worker has the opportunity to help change a small portion of events by not shying away from working in the AIDS field. When the history of AIDS is finally written, let the social work response be recorded as one of the finest during this immense public health crisis.

Suggested Reading

The following is a partial list of recent social work literature on AlDS-related topics.

Addiction

Caputo, L. (1985). Dual diagnosis: AIDS and addiction. Social Work, 30, 361-364.

AIDS Service Organizations

Lopez, D., & Getzel, G. (1987). Strategies for volunteers caring for persons with AIDS. Social Casework, 68, 47-53.

Sonsel, G., Paradise, F., & Stroup, S. (1988). Case management practice in an AIDS service organization. Social Casework, 69, 388-392.

Antibody Testing

Buckingham, S. (1987). The HIV antibody test: Psychological issues. Social Casework, 68, 387-393.

Caring for AIDS Patients

Napolene, S. (1988). Inpatient care of persons with AIDS. Social Casework, 69, 376-379. Children and AIDS

Boland, M., Allen, T., Long, G., & Tasker, M. (1988). Children with HIV infection: Collaborative responsibilities of the child welfare and medical communities. Social Work, 33, 504-509.

Lewert, G. (1988). Children and AIDS. Social Casework, 69, 348-354.

Miller, J., & Cariton, T. (1988). Children and AIDS: A need to rethink child welfare practice. Social Work, 33, 553-555.

Countertransference Issues

Dunkel, J., & Hatfield, S. (1986). Countertransference issues in working with persons with AIDS. Social Work, 31, 114-117.

Family Therapy Issues

Rowe, W., Plum, G., & Crossman, C. (1988). Issues and problems confronting the lovers, families and communities associated with persons with AIDS. Journal of Social Work and Human Sexuality, 6(2), 71-88.

Walker, G. (1987). AIDS and family therapy part 2. Family Therapy Today, 2(6), 1-6.

Zlotnik, J. (Ed.) (1987). AIDS: Helping families cope, recommendations for meeting the psychosocial needs of persons with AIDS and their families. Silver Spring, MD: National Association of Social Workers.

Gay Men and AIDS

Lopez, D., & Getzel, G. (1984). Helping gay AIDS patients in crisis. Social Casework, 65, 387-394.

HIV Dementia

Buckingham, S., & Van Gorp, W. (1988). AlDS-dementia: Essential knowledge for social workers. Social Work, 33, 112-115.

Buckingham, S., & Van Gorp, W. (1988). AlDS-dementia complex: Implications for practice. Social Casework, 69, 371-375.

Inner-City Issues

Honey, E. (1988). AIDS and the inner city: Critical issues. Social Casework, 69, 365-370.

Legal and Ethical Issues

Ryan, C., & Rowe, M. (1988). AIDS: Legal and ethical issues. Social Casework, 69, 324-333.

Prevention

Shernoff, M. (1988). Integrating safer sex counseling into social work practice. Social Casework, 69, 334-339.

Shernoff, M., & Palacios-Jimenez, L. (1988). AIDS prevention is the only vaccine available: An AIDS prevention educational model. Journal of Social Work and Human Sexuality, 6, 135-150.

Psychosocial Issues

Furstenberg, A., and Olson, M. (1984). Social work and AIDS. Social Work in Health Care, 9(1), 45-63.

Leukefeld, C., & Fimbres, M. (Eds.). (1987). Responding to AIDS: Psychosocial initiatives. Silver Spring, MD: National Association of Social Workers.

Rural Issues

Rounds, K. (1988). Responding to AIDS: Rural community strategies. Social Casework, 69, 360-364.

Terminal Illness

Moynihan, R., Christ, G., & Silver, L. G. (1988). AIDS and terminal illness. Social Casework, 69, 380-387.

Women and AIDS

Buckingham, S., & Rehm, S. (1987). AIDS and women at risk. Health and Social Work, 12 5-11.

Macks, J. (1988). Women and AIDS: Countertransference issues. Social Casework, 69, 340-347.

References

Evans, H. (1987, October 4). Spread word -- not disease: Fighting AIDS in the street. New York Daily News, p. 29.

Gross, J. (1988, January 25). A life defiant, despite AIDS. New York Times, pp. B1-B4.

Heyward, W., & Curran, J. (1989). The Epidemiology of AIDS in the U.S. In Gary Carlson (Ed.). The science of AIDS: Readings from the Scientific American (pp. 39-49). New York: W. H. Freeman.

Kirby, D. (1989). Community backed trials to seek minority involvement: Conference panel discusses access. Outweek, 1(5), 10.

Kolata, G. (1987, October 19). AIDS is killing women faster, researchers say. New York Times, p. A1.

Leary, W. (1989, February 9). U.S. needs data on drug and sex habits to halt AIDS, study says. New York Times, p. A25.

Lee, F. (1989, July 21). Black doctors urge study of factors in risk of AIDS. New York Times, p. B7.

Morgan, T. (1988, February 5). Inside a "shooting gallery": New front in the AIDS war. New York Times, pp. B1-B5.

Palacios-Jimenez, L., & Shernoff, M. (1986). Facilitator s guide to eroticizing safer sex: A psychoeducational workshop approach to safer sex education. New York: Gay Men's Health Clinic.

Rothenberg, R., Woelfel, M., Stoneburner, R., Milberg, J., Parker, R., & Truman, B. (1987). Survival with the Acquired Immunodeficiency Syndrome. New England Journal of Medicine, 317, 1297-1302.

Shernoff, M., & Palacios-Jimenez, L. (1988). AIDS prevention is the only vaccine available: An AIDS prevention educational model. Journal of Social Work and Human Sexuality, 6, 135-150.

Williams, L. (1989, February 6). Inner city: Under siege fighting AIDS in Newark. New York Times, p. 1.


Published in Social Work, V. 35, No.1, January 1990 by Michael Shernoff, MSW
©1990 Michael Shernoff

Permission is granted to copy or reproduce this article either in full or in part, without prior written authorization of the author on the sole condition that the author is credited and notified of reproduction



  
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