AIDS in the Black Community 1988 PDF

Rapid #: -22341912 CROSS REF ID: 820540 LENDER: INTARCHIVE (Internet Archive) :: Main Library BORROWER: XFF (Western Washington University) :: Western Libraries TYPE: Article CC:CCL JOURNAL TITLE: Death studies USER JOURNAL TITLE: Death studies. ARTICLE TITLE: AIDS in the Black Community: The Plague...

Rapid #: -22341912 CROSS REF ID: 820540 LENDER: INTARCHIVE (Internet Archive) :: Main Library BORROWER: XFF (Western Washington University) :: Western Libraries TYPE: Article CC:CCL JOURNAL TITLE: Death studies USER JOURNAL TITLE: Death studies. ARTICLE TITLE: AIDS in the Black Community: The Plague, the Politics, the People ARTICLE AUTHOR: Lester, Calu, and Larry L. Saxxon VOLUME: 12 ISSUE: 5-6 MONTH: YEAR: 1988 PAGES: 563–71 ISSN: 0748-1187 OCLC #: 10890428 Processed by RapidX: 4/1/2024 3:10:33 PM This material may be protected by copyright law (Title 17 U.S. Code) Internet Archive Interlibrary Loan Fulfillment Request on Monday, April 1st, 2024 Death Studies 1977-2014 0748-1187 AIDS in the Black Community: The Plague, the Politics, the People Lester, Calu, and Larry L. Saxxon volume 12 issue 5-6 year 1988 pages 563–71 Response from Internet Archive from: https://archive.org/details/sim_death-studies_1988_12_5-6 We hope this is helpful. Did we make your day? Tweet us @internetarchive Please explore the Internet Archive! Archive Scholar for fulltext search of over 25 million research articles https://archive.org/details/inlibrary and OpenLibrary.org for books to borrow Archive-it.org for library curated web collections Audio, software, TV News, and the Wayback Machine as well. The Internet Archive is a non-profit library with a mission to provide Universal Access to All Knowledge. NOTICE: This material may be protected by Copyright Law (Title 17, U.S. Code) [email protected] 300 Funston Avenue - San Francisco - California - 94118 - www.archive.org GO GO CO GO GO GO GO CO GO CO G0 GD GO GD GO G0 CO G0 0D G0 GO CO GOD GO GO G0 CO GO CO CO G0 CO CO CO AIDS IN THE BLACK COMMUNITY: THE PLAGUE, THE POLITICS, THE PEOPLE 0 GO GO GO GO GO CO GO GO GO G0 GO GD CO OO GO GO GO 00 OO GO GO GO GO GO CO CALU LESTER KWICEFAN, San Francisco LARRY L. SAXXON Saxxon Quinn Associates, San Francisco | This paper was originally developed by Calu Lester, the founder of KWICFAN, which took a novel approach to grass roots AIDS education in the black community. Calu died of AIDS before completing the work and the paper was completed by Larry L. Saxxon, who was both a friend of Calu’s and an AIDS program consultant. The paper presents a critical perspective of black America’s response to the AIDS epidemic. The findings are frightening. Denial within the black community, coupled with a lack of support from the agencies responsible for funding AIDS education, has created a potential epidemiological nightmare. IV drug use continues to be a critical problem of frightening magnitude, allowing an efficient vehicle of HIV transmission. Most sadly of all, the social conditions that create and perpetuate the problematic drug abuse patterns still continue in black America. Black people are clearly becoming the new face of AIDS. The Plague Black and brown people are quickly being acknowledged for their | position in the ranks of those people affected by the acquired immunodeficiency syndrome (AIDS) epidemic. Although gay white men have been the focus of attention with regard to the AIDS epidemic, the number of black and brown people affected is growing at a dangerously high rate. In Existentialism: A Theory of Man, Ralph Harper notes: Death Studies, 12:563-571, 1988 Copyright © 1988 by Hemisphere Publishing Corporation 564 C. Lester and L. L. Saxxon The temptation to exhaust reality by universalizing it has been passed through successive inversions of intellectualism down to present popular varieties of cynicism and disrepute, basic insights belong to the individual only and not to the culture, and thinking men find it necessary to clothe even their own ideas in the style of the acceptable past. (1) | \ i Here lies the most recent approach to the AIDS epidemic currently raging around the world and striking hardest in communities color. of Poverty, ignorance, indifference, and a buy-in to the myth that AIDS is a disease of gay white men have contributed to this situation. According to the Centers for Disease Control in Atlanta, between June 1, 1981, and September 8, 1986, a total of 24,576 cases of AIDS were documented (2). Of this number, 8,412 (40%) were black and brown people (25% and 14%, respectively). Also, 80% of women with AIDS were black or brown (3). Of all children with HIV infection, 80% were black or Hispanic. (The total comprises 21,010 people 13 years and older and 292 children under 13.) It has been estimated that 73.1% of the babies diagnosed with AIDS (most of whom are black) have at least one parent who uses intravenous (IV) drugs. Indications are that the IV drug epidemic in the black community has not lessened but has increased dramatically— and the implications are startling. Most black and brown people admit that there is a drug abuse problem in their communities. Because AIDS is a bloodborne disease and substance abuse and needle use contribute significantly to the transmission of AIDS, the virus has the opportunity to expand rapidly within these particular communities. The myth that AIDS is a gay white male disease has made its way into the black and brown communities and has contributed to a lack of understanding about the disease. The misinformation has delayed the asking of important questions that would provide an- swers those A these 3 4 4 + to how the virus affects lives. This tragedy affects not only at risk but black and brown communities in general. paucity of effective prevention and education programs within communities of black and brown people has allowed a virtual time bomb to slowly but steadily tick away. Despite the astounding data, there are to date no massive government-sponsored AIDS education and prevention programs in these communities. \ 4 AIDS in the Black Community 565 Safe sex practices and information have not been addressed sufficiently as part of preventing the spread of the AIDS virus in black and brown communities. This leaves an open avenue for the spread of disease. That black and brown communities appear to be 2 or 3 years behind in basic AIDS prevention and education is an obstacle to reducing HIV infection in general. As long as this remains the case, the virus will continue to spread. We need to look beyond the seropositive stages to what actually happens in those cases where there is a full-blown diagnosis of AIDS. The disease takes a different route within the minority communities. One major differences is survival rates among blacks with AIDS. The average remaining lifespan following diagnosis is ap- | | proximately 6 months for blacks compared with 18 to 24 months for whites with AIDS. According to Walter R. Dowdle, AIDS coordi- nator for the U.S. Public Health Service, ‘“This phenomenon may be due to the tendency of blacks to postpone medical services until very late in the course of the illness due to economic difficulties”’ (personal communication). Quality medical attention is an expensive commodity in America today, and blacks who exist on the lower rungs of the economic ladder are unable to obtain access to such care. The health care which is available may not be culturally responsive to the needs of blacks. | | | One important so distorted is that their efforts almost sexual population. reason the distribution of the AIDS infection is education and referral agencies have directed exclusively toward the gay white male and biThis situation is especially a problem for poor women and children. Politics The proportion of AIDS cases in the black and Hispanic communi- ties is significantly higher than might be expected given their distribution in the U.S. population. Blacks and Hispanics appear in all high-risk-of-infection behavior categories, which places them at in- creased risk of developing AIDS. Risk groups include homosexual/ bisexual males with and without histories of intravenous drug abuse, heterosexual intravenous drug abusers, heterosexual con- | 566 ) C. Lester and L. L. Saxxon tacts of persons with AIDS or at increased risk for AIDS, persons with hemophilia and other blood coagulation disorders, recipients of blood or blood product transfusions, and persons with ‘‘no known risk.’’ It is time to discuss the AIDS crisis in ways that will provide and encourage a wider understanding of its impact upon all Third World communities, including its devastating repercussions for these communities. The curtain has fallen, setting the backdrop for the second wave of the AIDS epidemic, and its primary target will be people of color. Until recently, the black and brown community leaders have taken a hands-off position, believing that this was solely an issue for gay white men. Yet there are 150 black and brown babies in New York hospitals dying of AIDS; most of these have parents who were simply not aware of the danger to their children whilé using intravenous drugs. Youth in communities of color are at multiple risk for exposure to the virus because many are still using IV drugs and participating at high-risk sexual behavior. Existing AIDS service-providing agencies are not adequately reaching them. Additionally, many youth cannot read or understand the material on AIDS prevention. Gay men of color constitute a significant portion of the total gay population and fall into multiple risk factor categories. As gay men, they did not share in the wealth of information that has influenced change in the gay white community. Many gay men of color are isolated in the impoverished inner city and have not been provided with the basics about how to keep from being exposed to the virus or spreading it. Also, many in this group are the victims of ignox rance, denial, drug abuse, and rejection by black and brown leaders. This homophobic reaction of black and brown leaders further alienates and isolates those persons of color at risk, as well as those already infected with the virus. At this of all times racism tends to rear its ugly head, prevent- ing normally eligible clients from reaping the benefits of much needed support systems that are already established for, and often by, white gay males. Scores of clients of color arrive at communitybased organizations providing AIDS-related services with virtually no knowledge of the mysterious disease which is draining the life from them. They know almost nothing about what is happening within their bodies because the attending professionals in medical institutions didn’t bother to assess whether their patients under- AIDS in the Black Community 567 stood standard English. During times of greater stress, many patients tend to revert to their native tongue, whether that be black vernacular or Spanish. For people of color, inclusion and advocacy are key words regarding the AIDS epidemic. People of color were not included at the outset of the assessment of groups at risk for AIDS. So, in turn, they have not been among the initial recipients of the vast amount le | of information and education available. Among those who have received excellent hospital, hospice, grief, and bereavement services, persons of color with AIDS have been few and for the most part invisible. The vast majority have i died alone and without benefit of family (who were usually the last to know and could only participate in the postmortem activities). This lack of inclusion and the restricted dissemination of relevant information have had an impact on mothers and infants as well. There are hospital wards where black and brown babies are dying alone, without stimulation, benefit of loving parents, or discharge plans, all of which would assure that their short lives would at least have some degree of happiness and enjoyment. The Advocate Support Services has played an exceptional role in assisting gay men confronted with this disease. Volunteers, both men and women, have made a difference in the lives of gay and bisexual men with AIDS through their tireless service and commitment. Volunteer agencies of special note include the Shanti Project in San Francisco, the San Francisco AIDS Foundation, New York’s Gay Men’s Health Crisis, and AIDS Project Los Angeles. Unfortunately, traditional service and advocate groups such as the NAACP, the National Black Social Workers Associa- tion, and the Urban League have been reluctant at best to comment or act on the issue of AIDS. The role of these groups is vital to the education and prevention effort within the black and brown communities because they have the established network to educate about the critical issues threatening the existence of the black and Hispanic culture. If this text does not provide the motivation to gete the leaders of the black and brown communities to respond to this call for action, we challenge them to take 1 hour of their busy day to visit a pediatric AIDS ward in New York City, Newark, Miami, or Washington, D.C., look into the faces of those helpless brown and black babies who had no choice about being caught in A | 568 : C. Lester and L. L. Saxxon such a horrible situation, and then say to them that they have ‘‘no comment.”’ Paul Kawata, executive director of the National AIDS Network, writes the following in his newsletter: / The disproportionate number of minorities who are diagnosed with AIDS is inversely proportional to the number of people of color who are involved in the AIDS education and service effort. Efforts to reach out to minority members of the gay community and to minorities in general have been hampered by a failure to appreciate the unique problems associated with communicating with these individuals. Who is at fault here? AIDS service providers for not adequately responding to the particular needs of persons of color, or minority communities and their leaders for not spearheading more effective education efforts? Undoubtedly, it’s a little of both. Whoever 1 is to blame, the fact remains that hundreds of thousands of minority citizens are in grave danger of ignoring or misunderstanding the realities of the AIDS epidemic. As our teachers once told us, statistics don’t lie. (4) One of the authors of this article became aware of this serious health issue as director of a homeless shelter, where he observed the attitudes of poor and homeless people toward health delivery sys- tems. More recently, when he worked as a psychiatric social worker in an AIDS clinic, specific problems, such as those described below, became clearer to him and the urgent need to address these prob- | lems more obvious. Clotelle, a black woman with AIDS and the mother of 16month-old Rayvette, who also has the disease, illustrates one of the problems facing mothers and children with AIDS. Clotelle died a year ago in a shelter for homeless people, lying on a cot next to her two older children, ages 7 and 8. Her main worry, beyond the pain of fevers and diarrhea, was what would happen to her children. Clotelle died without knowing who would care for them. She and her children might have been spared much anguish had the social services system made provision for children whose parents were dying of AIDS. Rayvette remains alone on a pediatric ward for children with AIDS. While she receives medical attention for her chronic fevers and bouts with pneumonia and unusual rashes, she has no family member to hold and cuddle her or to provide love, emotional stimulation, or support. The hospital staff do wha* they can, but they are overworked and do not have the time to give that needed sup- AIDS in the Black Community 569 port. Some volunteer programs are trying to recruit older people to meet this need. | Once a black or Hispanic person has AIDS, he or she can search in vain for culturally sensitive medical treatment or a support network. Hospitals routinely use English for informing Spanish-speaking patients that they have AIDS. Without a thorough understanding of their own affliction, these patients cannot pursue proper rhedical treatment, let alone process the anger and depression a with discovery of a terminal illness. Many die in confusion without any understanding of the AIDS virus that has ravaged their immune systems or infected their partners. The small number of people of color who are social workers, nurses, counselors, or doctors on AIDS wards makes it difficult for patients to find a caregiver with whom they can identify, and medical personnel may have difficulty establishing the rapport necessary to learn a patient’s medical, drug, and social history in order to provide proper treatment. Bud, a 27-year-old black man with a 5-year drug habit, was losing weight for months and suffering unexplained fevers and rashes. His poverty, coupled with a feeling that white doctors treated him with condescension, made him postpone seeking help. He finally went to the emergency room of the county hospital when an AIDS-relation lesion had closed his rectum and made it impos- i sible for him to defecate. Although the doctor attending Bud immediately diagnosed him as having AIDS, he gave Bud no explanation. Bud sought help from an AIDS support agency and was accepted into one of the organization’s shelter programs. However, the stress of being the only nongay man in the organization’s care tended to made Bud hostile. To protect the other people in the shelter home, the organization forced Bud to leave. Bud moved into a rundown hotel in the Tenderloin District of San Francisco. He died alone in his room 3 weeks later. ! Black and Brown AIDS as a World Problem: The Second Wave In June of 1986, the International AIDS Conference was held in Paris. The conference attempted to provide a sense of the scope of the AIDS problem in Africa. The data suggested that there may be i 570 C. Lester and L. L. Saxxon large numbers of people in East, Central, and West Africa who are seropositive and have AIDS. It is estimated that from 5% to more than 15% of the population in Central and equatorial Africa are infected with the virus (5). However, there were not enough consistent data to describe the epidemiological aspects of its spread due to a lack of diagnostic laboratories for testing and the reluctance of some governments in Africa to collect and report data on AIDS. For example, pediatric AIDS in Africa is confounded by other risk factors—namely, 75% to 80% of children in Central and East Africa have malaria and other immunosuppressive infections. The acute poverty in Africa exacerbates the threat of the AIDS epidemic there. Poor nutrition may also contribute to lower immune system responses to the virus, making it more likely that exposure to the AIDS virus will result in the development of AIDS itself. In Africa, people’s immune systems are also compromised by the large number of sexually transmitted diseases. Several studies have documented a high correlation between seropositivity for HTLV-III/ LAV antibody and heterosexual promiscuity (6). Poverty also impedes the development of adequate health delivery systems in many African countries. There are inadequate facilities for the sterilization of equipment and for the storage of blood for transfusions, and there is an acute shortage of needles for inoculations. This latter problem has the alarming result of putting many people who depend on rural clinics for their vaccinations in the same risk category as IV drug users. Illiteracy and limited facilities for dissemination of information further complicate the task of providing AIDS education and prevention. Poverty, malnutrition, and inadequate health and education services that form the backdrop to the AIDS epidemic in Africa are reproduced in the ghettos and pockets of poverty in U.S. urban centers, where impoverished communities of blacks and Hispanics are being infected by the AIDS virus in ever increasing numbers. If the second wave of the AIDS epidemic is to be prevented from inundating black and Hispanic communities in the United 8 States, a major national prevention program must be launched. Such a program would have to organize a pool of trainers— preferably people of color—who have a broad-based understanding of how AIDS affects black and Hispanic communities. Culturally and racially sensitive educational materials must be developed for AIDS in the Black Community 571 people at risk as weil as for service providers. New agencies must be established and old ones expanded so that people of coior at risk for AIDS have access to the full range of services and information concerning prevention, treatment, and suppert. Such a program is dangerously overdue. References 1. Harper, R. (1948). Existentialism: A theory of man. 2. 3.. 5. Cambridge, MA: Harvard University Press, p. 6. Update: Acquired immunodeficiency syndrome (AIDS)—United States. (1984). Morbidity Mortality Weekly Report, 32, 688-691. Centers for Disease Control. (1986). Update: Acquired immunodeficiency syndrome (AIDS) among blacks and hispanics—United States. Morbidity Mortality Weekly Report, 35, 655. Kawata, P. (1986). NAN Monitor, (newsletter of the National AIDS Network), 4(1), 9. Chase, M. (1986, June 24). AIDS has spread almost everywhere in Africa, Zaire doctor tells parley. Wall Street Journal.. Clumeck, N., Robert-Guroff, M., Van de Perre, P., Jennings, A., Sibomana, J., Demol, P., Cran, S., & Gallo, R. C. (1985). Seroepidemiological studies of HTLV-III antibody prevalence among selected groups of heterosexual Africans. JAMA, 254, 2599-2602.