Ever since America's big pharmaceutical companies served up the "cocktail" -- a potent, toxic mixture of prohibitively expensive antiretroviral drugs designed to suppress HIV and extend life while simultaneously creating side effects worthy of Dr. Frankenstein -- those of us living with HIV and AIDS have largely been expected to sit down, shut up and take our medicine. Lots of Americans think we've been "cured," some remain completely clueless about how HIV is transmitted and plenty others drone on unwittingly about how HIV has become a chronic, manageable disease -- just like diabetes. Only HIV is not diabetes. It's not just like anything else at all, really.
There are many ways in which HIV is not just like having diabetes. Some people with HIV are fired from their jobs, have their rental agreements torn up and receive inadequate health care when their HIV status is revealed. It happened in 1984 and it continues to happen in 2004. According to a survey of 43 community-based AIDS service providers in 11 states conducted by the American Civil Liberties Union (ACLU), civil rights violations continue to be widespread against people with HIV/AIDS throughout the United States. The ACLU's report, released in late 2003, documents denial of medical treatment, violations of privacy, deprivation of parental rights, workplace discrimination and refusal of admittance into nursing homes and residential facilities.
"The situation is much worse than we thought it would be," said Paul Cates, director of public education for the ACLU AIDS Project. "It is pretty horrible stuff when you realize this is not a disease spread through casual contact and we are more than 20 years into this epidemic." Medical privacy violations were reported by nearly all of the providers surveyed. Tamara Lange, an ACLU AIDS Project attorney, offered up a grim summation: "Breaches of confidentiality can and do unravel people's lives, forcing them to find new jobs, new schools and new homes." The stigma of HIV is alive and well in the United States of America.
Need proof? The ACLU has published HIV & Civil Rights: A Report from the Frontlines of the HIV/AIDS Epidemic, a compilation of two years' worth of research and interviews detailing all kinds of HIV discrimination and disregard for confidentiality. Among the incidents:
Even in America's heartland -- Nebraska, to be exact -- a 19-year-old woman is suing two former employers, a restaurant and a convenience store, for firing her after they learned she has HIV. Unfortunately, this young woman's story is all too common among people living with HIV. "Stigma and ignorance continue to hound people with this disease, even though we now know you can't get HIV through casual contact," remarks Leslie Cooper, a staff attorney with the ACLU's AIDS Project. "Fortunately, our laws make it clear that you can't discriminate against someone because they have HIV." With lawsuits filed in both Nebraska state court (where it's illegal to discriminate on the basis of HIV infection) and federal court (her firing is a violation of the Americans with Disabilities Act), the 19-year-old's former employers will have to explain how her jobs as a restaurant hostess and shelf stocker made her a threat to the community ... without sounding mean and stupid at the same time.
HIV discrimination is not confined to America's small towns. In the spring of 2003, HIV-positive gymnast Matthew Cusick was fired by his employer, Cirque du Soleil -- the enormously popular traveling circus featuring dance, high-caliber acrobatic performances and aerial, high-flying, balancing and manipulation acts. Cusick, 32, has been HIV-positive for the past decade and a gymnast since the age of 5. After auditioning for Cirque du Soleil, he was selected to receive four months training. He disclosed his HIV status prior to training, went through extensive medical exams with Cirque du Soleil's own doctor and was deemed a "healthy athlete" who "should be able to perform."
Cirque offered Cusick a contract to perform on the Russian High Bar, in which he hung upside down and caught aerialists, and the Chinese Poles, in which artists perform tricks on tall poles. Just three days before he was to take the stage for "Mystère," a show playing at Treasure Island in Las Vegas, Cirque told Cusick the company would not continue to employ him because he has HIV. Cusick brought his dismissal to the attention of Lambda Legal Defense and Education Fund (a civil rights group for gays, lesbians and people living with HIV and AIDS), who filed a federal discrimination complaint on his behalf and took the story public.
If Cirque du Soleil thought it could fire a gymnast because he has HIV and nobody would notice, they were mistaken. AIDS activists rallied, demonstrations were staged outside Cirque shows and protest letters and e-mails swamped the company.
Despite all that, it took Cirque du Soleil over six months to issue any kind of public statement. Finally, senior Cirque spokeswoman Renee-Claude Menard issued a rambling, obnoxious letter claiming Cusick was fired "solely for safety reasons" because "the risk of exposing fellow artists, technicians and/or spectators to HIV as a consequence of injurious physical contact was too great." She noted that Cusick was eligible for other jobs at Cirque and declared that "Contrary to the allegations, Cirque du Soleil has not discriminated against this particular acrobat."
Menard, apparently a direct descendant of the Wicked Witch of the West, didn't offer Cusick any of those other positions, quoted no statistics substantiating acrobatic transmission of HIV, but courted sympathy for Cirque by whining that "Our name is being dragged through the mud. This is more hurtful than anything else." Yes, it took her six months to come up with all that.
Is Matthew Cusick a threat? The American Medical Society for Sports Medicine and the American Orthopaedic Society for Sports Medicine said in a joint statement that sports-related transmission of HIV is unlikely, although the theoretical chance is "not zero." But they concluded, "Based on current medical and epidemiologic information, HIV infection alone is insufficient grounds to prohibit athletic competition." Even an organization as conservative as the National Collegiate Athletic Association (NCAA) admits, "There are no validated cases of HIV transmission in the athletics setting," and concludes that "there is no recommended restriction of student athletes merely because they are infected with HIV." Reality check: Cusick would need to be having some form of sexual intercourse or shooting up drugs with his fellow performers and audience members for there to be a real threat of HIV transmission.
After a torrent of criticism, numerous efforts to educate the folks at Cirque du Soleil and an acknowledgment of discrimination by the U.S. Equal Employment Opportunity Commission (EEOC), the company announced at the end of January that it's willing to reinstate Matthew Cusick. Renee-Claude Menard spoke on behalf of Cirque again, asserting that "It was a learning procedure, and we're going to keep learning. We can't be experts in everything." It's not at all clear exactly what Menard learned in the nine months that passed after Cusick's firing, although it does make one wonder if she had maybe been an acrobat herself once and dropped from the Russian High Bar on her head. Repeatedly. Because, you know, it really shouldn't take any reasonable, conscious adult nine whole months to understand how HIV is transmitted.
And so, for all those folks out there who want to characterize HIV as another chronic, manageable disease just like diabetes, the question remains: Do you honestly think Matthew Cusick and that 19-year-old Nebraska girl would have been fired if they had diabetes instead of HIV?
David Salyer is an HIV-positive journalist and AIDS educator living in Atlanta, Georgia. He leads safer sex presentations for men and has facilitated workshops for people infected or affected by HIV since 1994. Reach him by e-mail at CubScout@mindspring.com.