FIGHTING BACK AIDS ACTIVISTS WIN SOME VICTORIES
Portner, Jessica
FIGHTING BACK AIDS activists win some victories BY JESSICA PORTNER Astudent at Howard University in Washington, D.C., was admitted to the university hospital for psychiatric care after...
...And these people have no political clout, so the leadership can't afford to care about them...
...With the paltry $1.1 billion allocated to AIDS education and prevention by the Reagan and Bush Administrations from 1982 to 1988, AIDS activists have become political organizers, lobbyists, and on-the-spot virologists to deal with the epidemic effectively...
...According to the Whitman Walker Clinic, which represented the student in a suit against Howard, "Hospital staff had strapped the woman to a bed for five days, [and] left her wallowing in her own feces," in an out-of-the-way facility...
...You'd have to quit your job, become disabled, and spend all your money so you'd be eligible for Medicaid," says Barr...
...People say gays have been devastated by AIDS, but my budget proves them wrong...
...The group often and effectively uses civil disobedience to challenge what it sees as a prejudicial legal system...
...Attorney Catherine O'Neill of the Legal Action Center in New York, who has been representing disadvantaged clients for more than a decade, sees the ADA as a Bandaid measure which will have little effect for her clients unless it is coupled with outreach and education...
...We said the ideal gift would be a dozen roses and a dozen condoms," she says...
...Kennedy modeled this bill as an "emergency aid package," comparable to California earthquake relief and the savings-and-loan bailout in order to leapfrog the often time-consuming Congressional approval process...
...The Alliance runs a resident facility, a food pantry, a family registry, and a weekly radio show...
...Americans suddenly wanted to know more about the disease...
...His chief focus now is drug testing...
...While some concentrate on this kind of political pressure, other AIDS activists muster entrepreneurial energy to get results...
...The insurance companies have a very powerful lobby," says NORA's Decker, who notes that the chances of passing a law requiring companies to end their biased practices were so remote that a bill was never even introduced in Congress...
...A young black man in Detroit recently entered the U.S...
...And this year, when actor Paul Michael Glazer's daughter died of AIDS— a contaminated blood transfusion her mother received shortly after giving birth was transmitted through breast feeding to the child—Ted Koppel devoted a Nightline show to the growing number of pediatric AIDS cases in the United States...
...The inclusion of AIDS in the ADA's definition of "contagious disease" is a victory not only for AIDS patients, but for the AIDS activists who made it happen...
...Safe sex isn't second nature to them...
...It's clear that if AIDS were primarily affecting middle-class straight white America, it would be more thoroughly reported...
...Seminars will be set up in businesses around the country to inform managers about the ADA...
...they need to be reminded," he says...
...The ADA now extends this ban on discrimination against sufferers of contagious diseases to the private sector as well...
...Sanders calmly discusses the clinic's innovative AIDS prevention program, which provides free testing, counseling, and health care to Washington residents...
...If you look at Legionnaires' disease [a, virus which mysteriously killed about twenty middle-aged white men in the early 1980s], and you compare how the press responded to that to how they're dealing with AIDS, the difference is overwhelming," says Sanders...
...The company threatened to revoke the policies of two other waiters and a bartender, all of whom just happened to be gay," he says, noting the company offered to reinstate the policies if they agreed to take an HIV test...
...We're all media queens out here," says Jesse Dobson, an organizer for ACT UP/San Francisco who discovered last year that he is HIV-positive...
...Julian Rush, executive director of the six-year-old Colorado AIDS Project, is a veteran activist...
...The purpose was to get them arrested," Barr explains, "so we could challenge the law...
...Let the patient take the risk," Dobson says, "because the downside is pretty bad...
...bered as the year the balance for people with AIDS was tipped...
...All refused...
...AIDS is just one of many oppressions," he says...
...Kennedy's position represents a sympathetic view that is gaining mainstream support in Congress...
...Insurance companies are, according U. many AIDS activists, the greatest villains in America's AIDS saga...
...And 1990 may be rememJessica Portner is a free-lance writer in Washington, D.C...
...And because most organizations are targeted at men, women are falling through the cracks...
...But when he talks about the mainstream press's response to the epidemic, he becomes visibly angry...
...In our sound-bite society," he says, "we have to have a concise Entertainment Tonight message to get people's attention...
...If it had been, proponents argue, the bill never would have passed...
...Pooling resources from such groups as the American Foundation for AIDS Research (AM-FAR), local governments, and concerned citizens, community-based organizations have grown larger and gradually stronger...
...Patrick's Cathedral last December, a group of ACT UP protesters stormed into the church with banners and placards denouncing John Cardinal O'Connor as a "devil" while the cardinal delivered his Sunday-morning sermon...
...Robert Garcia heads ACT UP/New York's Latino Caucus, formed recently to address the growing AIDS crisis in the Hispanic community...
...And, as Chai Feldblum of the ACLU's AIDS Project argues, the educational effect could be enormous...
...The logic is that if it is illegal to discriminate, it must be wrong.' can only be seen "within the context of malnutrition, lack of education, crime, and drug use...
...Evening television reports showed young men in black T-shirts feigning death in the aisles and chomping on communion wafers...
...We have an antiviolence project where volunteers patrol certain neighborhoods," Waybourn notes...
...But the ADA is a crucial first step toward giving AIDS sufferers—increasingly the poor, minorities, women, and children—the tools to fight back...
...Two lesbians working in a manufacturing plant for Johns Hopkins University in Baltimore were almost fired recently because co-workers suspected them of "spreading AIDS...
...Michael Perelman, a twenty-six-year-old visual artist in New York City, took a job at Clyde's restaurant in the West Village in 1986 and paid $59 a month for a group health plan...
...Wilkerson advocates a positive approach to education, pointing to her group's Valentine's Day drive...
...Senator Edward Kennedy, Democrat of Massachusetts, wants to move beyond the ADA...
...Howard University was found guilty of discrimination and now allows any person with HIV infection equal treatment in any unit of the hospital...
...William Waybourn, president of the Dallas Gay Alliance and a consummate businessman, boasts a $1.2 million budget for 1991, 70 per cent of which comes from individual contributions of $20 or less...
...Department of Labor's Job Corps, which provides residential training for disadvantaged youth...
...Congress recently passed the Americans with Disabilities Act (ADA), which extends civil-rights protection to people with AIDS under a definition of "contagious diseases...
...Official sources" will be spreading the word about disabilities and AIDS...
...Dob-son and others are putting pressure on the Food and Drug Administration to adopt "parallel track" guidelines for releasing AIDS drugs immediately after safety testing, without waiting for clinical trials to assess possible health complications...
...He charges Latino leaders are "in a deep state of denial" about the impact of AIDS...
...It's one of the things we're most jazzed about these days because it's been a successful effort," Dobson says...
...The National Organization Responding to AIDS (NORA) stepped in with an impromptu educational seminar about transmission and risk factors on the job, preempting any lawsuit...
...When the doctors discovered from her medical charts that she had tested positive for the HIV virus, which causes AIDS, they refused to admit her to the psychiatric ward...
...And just last May, the Hoffmann-LaRoche pharmaceutical company, which manufactures the newest antiviral drug DDC, filed an early-release application with the FDA...
...That means the estimated one to two million Americans with HIV infection who may be asymptomatic may have no medical option if they become ill...
...In poor Hispanic neighborhoods, says Garcia, AIDS is one epidemic of many and 'Civil-rights law can have a powerful effect on attitudes...
...It is not a question of resources—because we can find the resources...
...Currently, ACT UP is on an "illicit campaign" to distribute clean needles to drug users around the city...
...Volunteers go into local bars and "do one-to-one contacts about safe sex...
...Rush points out that safe-sex dialogue has to be direct because of the rate of relapse behavior...
...At its now-infamous demonstration at St...
...His AIDS funding bill, which would provide $600 million in "emergency funds" for "hard-hit" cities and states to develop HIV care programs, recently passed both houses of Congress but has not yet been signed into law...
...Twenty-five-year-old Scott Sanders, the public-relations director of the Whitman Walker Clinic in Washington, D.C, sits in his white-walled office, which is decorated with photos of fundraisers and a fluorescent poster of a red-eyed Reagan with the word AIDSGATE in black letters underneath...
...One innovative program is the Beauty Shop Project, where volunteers go into salons and distribute safe-sex manuals and condoms to the customers...
...In major cities from Los Angeles to New York, activists are plastering kiosks with posters announcing AIDS education meetings, rallies, and fundraisers...
...Though ACT UP/New York may be the national model, each AIDS group has to adapt its style to its constituency...
...It also protects people perceived as HIV-positive...
...For example, hotels may now be fined for refusing rooms to guests who fall into high-risk categories...
...And the new disability act doesn't remedy that...
...Such celebrities as Elizabeth Taylor started holding galas and chic fundraisers that made the pages of People magazine...
...A poll the project conducted last summer showed a 20 per cent increase in AIDS awareness among contacts, beating the state's education track record by a large margin...
...We have taken modern marketing techniques and applied them to gay rights," he says...
...It is clearly less popular these days to publicly argue that "deviant" behavior warrants violent punishment...
...So AIDS activists joined forces with the disability community, tacking it onto a disability-rights law...
...Employers will, however, be required by the act to find an insurance company to sign people with HIV infection, and cannot refuse to hire anyone because of the increased cost of a health policy—a measure that affects insurance companies indirectly...
...Many companies require new enrollees to take HIV tests, even if they do not fall into high-risk categories...
...The Council passes out its leaflets in "nontraditional settings," such as laundromats, churches, and town meetings...
...And, for many Americans, AIDS still generates a fear that they feel justifies differential treatment of those suspected of having contracted the disease...
...Six weeks after testing him without his knowledge, the administrators told him, "You have AIDS and you can't stay here any more," according to attorney David Barr, who recently filed suit on the youth's behalf...
...HIV infection among women, especially women of color, is increasing rapidly," explains Jacquelyn Wilkerson of the Women's Council on AIDS in Washington, D.C...
...It's a good way to reach women in a nondiscriminatory way...
...Unfortunately, the media attention does not ensure quick release of affordable drugs, nor does it alter national policy...
...ACT UP (AIDS Coalition to Unleash Power) of New York, the country's largest and arguably most militant gay-rights group, lashes out at judges, pharmaceutical companies, or the Bush Administration, depending on the crisis of the week...
...The company, Perelman says, claimed he had lied about a preexisting condition...
...Federal law previously protected only those people employed in and served by institutions that receive Federal funds (excluding military personnel and Federal prisoners...
...Barr, who "is on the staff of the New York-based Lambda Legal Defense Fund, the country's oldest and largest gay legal-defense organization, explains, "It's one thing to say, 'You have AIDS and you're fired,' and another thing to say, T think you have AIDS and you're fired.'" Businesses may no longer legally refuse service to patrons they "perceive" to have AIDS...
...They think junkies are the only members of their communities dying of AIDS," he says...
...People don't want to be seen as enemies of the disabled," says Kurt Decker of NORA...
...The law wasn't advanced in Congress or elsewhere as an "AIDS bill...
...Many AIDS activists say the pace of change in the public's attitude quickened in 1987, when Rock Hudson died of AIDS...
...AIDS has dramatically galvanized our society...
...The group has a highly focused mantra that kicks off every Monday-night meeting: United in anger and committed in action against AIDS...
...Civil-rights law can have a powerful effect on attitudes," she says...
...There is even a program called "Pet Pals" where volunteers help people with AIDS care for their pets by soliciting donations or taking animals to veterinarians...
...Privately funded AIDS hotlines are operating in dozens of metropolitan areas, providing referrals to hospitals, clinics, law offices, and crisis centers...
...Possession of any drug-related paraphernalia is illegal in New York State...
...He runs a controversial outreach program that is being duplicated in urban areas across the country...
...AIDS is a disaster that demands a response by the American people," he said recently...
...FIGHTING BACK AIDS activists win some victories BY JESSICA PORTNER Astudent at Howard University in Washington, D.C., was admitted to the university hospital for psychiatric care after attempting suicide last fall...
...The logic is that if it is illegal to discriminate, it must be wrong...
...In March, ACT UP deliberately announced the time and place of the needle distribution, sparking a counterdemon-stration at which ten ACT UP members were arrested...
...But ACT UP's goal is not just to advance the struggle on the evening news...
...What we need is the political will...
...AIDS is becoming as much a legal as a medical battle...
...And it's also convenient because they're not going anywhere," Wilkerson says...
...The Alliance provides a myriad of AIDS-related services from testing to counseling to inventive educational outreach...
...The ADA won't transform society's fear into compassion or create an accessible health-care system...
...There is safety in numbers...
...With the success of these gay-based AIDS coalitions as models, many new groups have organized around the concerns of women, blacks, and Hispanics...
...When he sent in his first doctor's bill, the insurance company canceled his policy...
...The bartender died last year of AIDS...
Vol. 54 • August 1990 • No. 8
