AIDS Project Forges Ahead
AIDS Project Director Hayley Gorenberg and Staff Attorney Jonathan Givner discuss Lambda Legal’s ongoing battle to protect and defend the civil rights of people with HIV.
Published 02/23/04
Q: WHY IS IT IMPORTANT FOR LAMBDA LEGAL TO HAVE A STRONG AIDS PROJECT?
Gorenberg: HIV is inextricably tied to civil rights. As the epidemic has progressed, it’s become clear that people who are marginalized and who don’t have their rights respected are more vulnerable to HIV. This vulnerability can be linked to being closeted or to being a young person who is gay – or questioning – without strong support systems or to experiencing the persistent impact of racism in our society. We see these connections among our clients all the time.
Givner: There is also a continuing societal relationship between homophobia and fear of HIV, so that if someone is discriminated against because of their HIV status, it’s often linked in more complicated ways with homophobia. We see that, for example, in what employers say to employees. An employee might say, “You didn’t give me this job because I’m HIV-positive,” and the employer will say something like, “We don’t discriminate against gay people.”
Gorenberg: And when we look at calls to our Help Desks, we see that HIV continues to have a heavy impact on LGBT communities. It’s not unusual when we talk about job discrimination to hear reactions along the lines of “Is that still happening? Wasn’t that so eighties?” But the fact is we get many HIV discrimination calls. The education isn’t finished and the stigma is still operating.
Q: WHAT KIND OF TRENDS ARE YOU SEEING IN HIV DISCRIMINATION?
Gorenberg: We hear a great range of problems from the people who call us. We have people coming to us because they’ve been discriminated against in jobs they can do very, very well, where their HIV status has no impact on their ability to do the job, but they’re being kept from doing it. Those are folks who are often quite healthy and have well-managed HIV. Then there are people who’ve been disabled by HIV and can’t do their jobs anymore, and the way they live day to day is through government programs such as Social Security Disability benefits, or they get their medications through ADAP [AIDS Drug Assistance Program], so we focus on keeping those programs strong.
Givner: Also, people with HIV are living longer. More and more people over 50 or 60 are living with HIV and experiencing everything that happens to other people in that age group. They experience other non-HIV-related incidents and health problems, and then they encounter discrimination in nursing homes and in long-term care.
Q: AND HOW DO PEOPLE’S FEARS OR MISUNDERSTANDINGS PLAY INTO THIS TYPE OF HIV DISCRIMINATION?
Givner: People with HIV often face discrimination based on fears about HIV transmission. It’s not uncommon for employers or medical providers or landlords to refuse to deal with a person with HIV because they incorrectly believe that that person is a direct threat to them and to other people. Even though we’ve known for two decades that this is not true, people with HIV are still mistreated because of these unfounded fears. It’s important that employers and others make decisions based on the scientific facts about HIV, not on their own misconceptions, and we’re fighting to make sure that happens.
Q: HOW IMPORTANT IS THE FEDERAL AMERICANS WITH DISABILITIES ACT [ADA] IN HIV DISCRIMINATION CASES?
Gorenberg: It’s a very useful tool, and we use it to the greatest extent possible. In order for the ADA to apply, a person has to have a “substantial limitation of a major life activity.” The major life activity that is substantially limited often has nothing to do with your work life. For instance, the major life activity that was found to be substantially limited by HIV in a pivotal Supreme Court case was having children. Obviously, you wouldn’t expect that limitation to have anything to do with the ability to do various kinds of jobs, but it means that the person falls under the ADA’s protection and can’t be discriminated against on the basis of having HIV.
Givner: The thing about the ADA standard is that, as any person with HIV knows, HIV affects your life in a lot of ways. In our ADA cases, we’ve argued that HIV significantly affects people’s lives, which brings them within the disability definition. Every case is different, but by and large, the ADA protects people with HIV and other disabilities against discrimination and that’s true even for someone who is healthy.
Q: HOW HAS LAMBDA LEGAL BUILT ON ITS OWN HISTORICAL HIV WORK?
Givner: In many ways we’re dealing with the evolution of the same issues that Lambda Legal and people with HIV have been dealing with for 20 years, so in that sense we’re building on our work in the past. And in the past Lambda Legal won a lot of very important cases setting precedents to strongly enforce the Americans with Disabilities Act and other state laws, and obviously those victories help with our HIV work now.
Q: WHAT’S IN STORE FOR LAMBDA LEGAL’S AIDS PROJECT IN THE FUTURE?
Gorenberg: We’ve filed several new lawsuits that will be working their way through the courts in the next couple of years. We’re also getting extremely involved as the Social Security Administration reevaluates its criteria for HIV disability. This is crucial to the tens of thousands of people across the country who get their subsistence benefits and their medical care through this program, because they’ve been disabled and can’t otherwise work. We’ve led efforts to build a national coalition of legal and medical experts, and we’re trying to work with the Social Security Administration in an ongoing way through their policy conferences to make this come out right.
Givner: Confidentiality issues remain very important. A person’s HIV status is their own business, and many states have laws that protect this confidentiality and prohibit doctors, employers and others from telling the world that a person has HIV. Those laws exist in part because if someone’s HIV status is widely disclosed, it’s very possible that the person will become a target of discrimination, which is still rampant.
Gorenberg: I’d also like to build on our successful work in securing the right to transplants for people with HIV; we need to take a hard look at the whole system of transplantation and cell and organ donation and make it as fair as possible. We received a call recently from an HIV-negative man who’d been on the bone marrow registry for years and was ready to donate, but when he was contacted as a potential match and answered yes to the question of whether he’d had sex with a man in the last five years, he was told he would be struck from the list. He was haunted by the possibility that there was someone out there whose life he could have saved, but he hadn’t been allowed to help because he was gay, even though we have the testing technology to show that there is minimal risk in this situation. That’s a stark example of why these policies need to be challenged – and why Lambda Legal’s HIV work is such a critical part of our mission.
