amfAR, The Foundation for AIDS Research

Awards of Courage

Matthew Coles, Esq.

Honoring with Pride 2000 Honoree


For over 20 years, Matthew Coles has been an exceptionally tireless leader in the movement to protect the civil rights of people with HIV and AIDS, gay men and lesbians, and, indeed, all Americans. His efforts stand behind many of the courtroom victories that define current law, including several historic cases protecting the rights of prisoners and health-care workers with HIV. He wrote and helped lead the campaigns to pass California’s first comprehensive gay rights law, California’s statewide law banning employment discrimination based on sexual orientation, and San Francisco’s domestic partnership law. He was also one of the main architects of the successful challenge to Colorado’s Amendment 2, culminating in the landmark U.S. Supreme Court decision in Romer v. Evans. Since 1995, Mr. Coles has been Director of the American Civil Liberties Union’s national HIV/AIDS and Lesbian and Gay Rights Projects. 


InIn the early 1980s, I was working at a small two-lawyer firm in San Francisco — my office was at Market and Castro. At that time, we were the only lawyers in the neighborhood. We did a mixture of civil rights work and what we called "lesbian and gay family law," real estate, small businesses, and wills. We thought of the gay community as our client, and we had been working for a number of years on a bill to make discrimination on the basis of sexual orientation illegal in California.

Some of our clients were among the first people to get sick in what we now know of as the AIDS epidemic. That was when it was called GRIDS — "Gay-Related Immune Deficiency Syndrome." California state assemblyman Art Agnos, whom I knew from working on anti-discrimination bills, called me when AIDS testing first became available. We managed to put together a very unusual coalition of blood banks, public health people, and civil libertarians to create an early anonymous testing system and very strong confidentiality protections for AIDS information.

I found myself working more and more often with clients and friends who were getting sick. I found myself frequently doing wills in hospitals — and on deathbeds. I faced more situations than I care to remember where I had to tell parents that their child was gay and that he was dying of AIDS. By 1987, between the emotional toll and the lack of resources, I had grown tired of fighting these battles on my own. So I took a job as an attorney at the ACLU of Northern California, based in San Francisco.

By then, the response to the epidemic was changing. People were more aware of the disease, and there was infrastructure like the AIDS Legal Referral Panel in San Francisco, which got lawyers from all sorts of firms to donate services to people who needed help. But some people were falling through the cracks, and we were in a position to begin addressing their needs at the ACLU. We quickly decided to focus on the criminal justice system and prisoners with HIV — because, then as now, almost nobody cares about people in prison. We also focused on schools. It’s hard for some people to imagine this now, but at that point there were people who wanted to put kids with HIV in separate classes. And we focused on health care workers, police, and other public safety officers.

The extent to which responsible people let fear of HIV overrun their reason could be very discouraging. I represented a doctor with HIV who did routine physicals on FBI agents. The FBI fired him after it heard the rumor that he had HIV and he refused to discuss it. There is, of course, no risk of transmission in a physical. It took three hearings, a trial, two appeals, and four separate decisions on appeal to vindicate him. By the time the vindication arrived, my client had died. The FBI, of course, is part of the Justice Department, which is supposed to enforce the laws against discrimination.

I fought with prisons that segregated people with HIV, schools that wanted to tell everyone on staff the names of students who had HIV, police departments that wanted to broadcast the names of people with HIV over their radios on emergency calls. You’d get their own doctors in to explain why it made no sense, they would understand, and then you could see the fear come over them, and they would come up with the most amazing explanations of why they had to do it anyway.

I think the incredible challenge of AIDS is that the only way you can slow or stop the spread of this epidemic is by informing people about what they need to do to take care of themselves and other human beings, and then persuading them to do it. There’s nothing else you can do, and generally Americans don’t like that kind of an answer. Americans like to think of disease or policy in the same way you think of an automobile — they want to take wrench in hand, tune it up, and make it run right. Unfortunately, this tendency plays into the hands of people whose ideology makes them want to react in as punitive a way as possible to anything involving gay people, or people who use intravenous drugs, or minorities: lock people up, track names, track sexual partners. It has been a challenge to point out that this is not actually a common sense solution.

I’m a congenital optimist — I really tend to think everything is going to turn out for the best. For instance, I’ve never had any doubt that, long before I retire, lesbians and gay men are going to be functionally equal in this society. Having said all that, I’ve found the last couple of years, thinking about AIDS and the law, very grim. We once had a near consensus on the importance of anonymous testing and a voluntary partner notification system, but this consensus has fallen apart. And we know today exactly what we knew in 1986: the lack of a true anonymous testing system deters people from getting tested for HIV. I think that the current shift in policy reflects a mixture of blind love of statistics with the fact that a very large proportion of the people who are being deterred are extremely poor and already deeply marginalized, even more so than a lot of the communities we were talking about earlier in the epidemic, and people just don’t care about them very much.

Convincing courts that AIDS was a covered disability under the Americans with Disabilities Act was one of the great victories of the civil rights movement of the 20th century. But today, for reasons that in some cases are almost comic, courts are reading this best of laws like it was an anti-trust regulation — in a very crabbed, word-parsing, technical way, which is not typically how we look at civil rights statutes. As a consequence, the very usefulness of the law has been severely limited. That’s bad enough, because it means that we will not be able to help many people who we should be able to help. But the more serious issue is that, from a public health standpoint, the ADA was not about who should or shouldn’t be able to sue. It was meant to persuade people that society was ready to take care of them, that they could take the risk of getting tested, the risk of being identified as someone with HIV, because the "good guys" were going to be on your side, protecting your rights, protecting you from the people who are in the state legislatures proposing to make lists. As the message gets out that there actually is no very good protection, that society is not really there on your side, it’s going to help drive the epidemic back underground, making it much harder to fight and much harder to bring to an end.

The saddest thing to me in the AIDS epidemic is that many, many people whom I know — knew — died because of something that they had no idea how to prevent. But by the time HIV began to move as an epidemic among people who used IV drugs, we absolutely knew how to prevent widespread infections. Needle exchange. It was cheap and easy to do. But, except in a couple of places in the country, we didn’t do it, and thousands and thousands of people are living through incomprehensible misery and dying as a result of that astonishing decision. To a certain extent it will happen again, as a result of the decisions to make test results reportable and to limit the ADA. People are going to suffer great misery while we’re mouthing this stuff about drugs being able to prolong and improve the quality of people’s lives. As a nation, we need to look at why we’re willing to let so many people die. And as a community of activists, we need to look beyond society’s marginalization — and find the courage and compassion to fight harder than ever for those who need us most.