amfAR, The Foundation for AIDS Research

Awards of Courage

William B. Rubenstein, Esq.

Honoring with Pride 2000 Honoree


 William B. RubensteinIn 1983, as a brilliant young law student at the start of his career, William B. Rubenstein chose to dedicate his considerable abilities to protecting the rights of people with AIDS. It was the right choice, a rare choice, and a courageous choice. For nearly eight years, he fought discrimination and advocated equal rights at the National AIDS Project and the National Lesbian and Gay Rights Project of the American Civil Liberties Union — first as Staff Attorney (1987-1990) and then as the Director (1990-1995). Mr. Rubenstein’s books about issues of sexuality and health include Cases and Materials on Sexual Orientation and the Law (1997); the co-authored work, The Rights of People Who Are HIV Positive (1996); Lesbians, Gay Men, and the Law (1993); and AIDS Agenda: Emerging Issues in Civil Rights (1992), co-edited with Nan D. Hunter. He is a member of the Board of Directors of the ACLU of Southern California, the Board of Advisors of the HIV/AIDS Legal Services Alliance, and the Board of Advisors of the HIV Legal Check-Up Project, a Los Angeles-based program for people recently diagnosed with HIV/AIDS. Mr. Rubenstein has taught at the Harvard School of Public Health and at Harvard, Yale, and Stanford Law Schools. Since 1997, he has been a law professor at the University of California, Los Angeles (UCLA) School of Law. 


I first got involved doing volunteer AIDS work in law school, around 1983 or 1984. You’ve got to try to remember what the situation was like when we first learned about HIV — it was years before an HIV antibody test was widely available, and every aspect of the AIDS crisis resonated with uncertainty. Most of us who were gay men operated under the assumption that we were probably infected and didn’t have much time to live. Scientists were unable to explain why the virus seemed to lay dormant and harmless for years and then become suddenly activated. Our doctors — for those of us who had doctors — were unable to provide treatments and people had only limited access to experimental drugs, which then had little success. The primary response of many influential people was concern that AIDS would "break out into the general population," of which, presumably, we were not a part, and where, presumably, the deaths would really matter. So besides wondering why I was bothering to go to law school, I had two very strong feelings: first, that I had to do something for my community or I couldn’t expect other people to; and second, that if I didn’t have long to live, I wanted to make some contribution before I died.

After I graduated, I moved to Washington to clerk for a judge, and simultaneously began to do volunteer work with the Whitman-Walker Clinic, mainly drafting wills. I wrote dozens and dozens of wills that year, 1986-1987. And I applied for and received a grant administered by my fellow recent graduates of Harvard Law School to go to work at the ACLU full time when my clerkship ended.

In 1987, there were still very few legal organizations working on AIDS, but the ACLU’s traditional commitment to civil liberties made it a natural destination. Nan Hunter had just started a lesbian and gay rights project at the ACLU’s national office and was a leading AIDS lawyer, too, so it was a real honor to get to work with her. And when the ACLU put its name behind these efforts it brought the imprimatur of the traditional civil rights community to the cause. This was especially important because the gay community and HIV in particular were still very marginalized in the 1980s.

The enormously important AIDS issue at the time was whether HIV infection would be considered a disability for purposes of discrimination law. The Supreme Court implicitly decided this question in our favor, in a 1987 case involving tuberculosis, but we had to fight hard to ensure that this position would later be incorporated by Congress into the Americans with Disabilities Act. It was a battle to establish the principle that people should be treated on the basis of good public health data, according to their abilities, and that we should not give in to unreasonable fears and prejudices. Our other major area of work in the 1980s was in criticizing proposed public health strategies. We were extremely concerned in those days about a whole panoply of policies that had the potential to severely curtail people’s civil liberties: quarantines, very aggressive forced HIV testing programs, and of course perennial issues like name reporting and contact tracing. It was a time when civil rights lawyers were cynical about the idea that courts could be a place of social change, but we won almost all of our cases. We helped people keep their jobs, forced Medicaid agencies to pay for treatments as they slowly became available, defended attempts to distribute clean needles to drug users, and even won a $500,000 jury verdict in a discrimination case against a hospital.

Considering where we started and what we were up against, it’s amazing what has been accomplished in the public policy arena. I spent much of the first year that I was at the ACLU working as a watchdog over the commission that President Reagan had invented to "study" AIDS. This was 1987. I would say it was a joke if it hadn’t been so tragic. Six years of his administration had gone by and Reagan had never addressed AIDS in any way — so to set up a commission to "study" the problem at that point was the last thing we needed from the federal government. The final blow was that he appointed a generally ignorant group of party loyalists — including "AIDS experts" like the head of the Amway Corporation and Cardinal O’Connor — whom he thought he could rely upon to not criticize his Administration in any way. There was only one gay man on the Commission — a scientist named Frank Lilly — and he was one of the only people who knew anything about AIDS. We sued President Reagan on behalf of the National Association of People with AIDS to try to get a more balanced composition. This was my first lawsuit!

But my main job was to follow these people around as they held hearings throughout the country and to point out the hypocrisy of the whole endeavor. It was a fascinating experience for several reasons. I saw how initial reactions to the AIDS crisis were deeply influenced by a sense of revulsion towards those infected with HIV, gay men and drug users. The pervading sense that people with AIDS should be cast out from the community made it difficult to deal with the epidemic as a straightforward public health issue. But I also saw a demonstration of the general principle that knowledge is the best antidote to prejudice — the more people get to know those whom they think of as "other," the more difficult it is to ostracize them. I watched the AIDS community throughout the United States literally educate the members of this commission. And what was most interesting was that the commission’s final report was fairly critical of the Reagan Administration and made some important recommendations.

To the extent that we have been able to get people to confront HIV based on the public health facts and not on prejudicial ideas, we’ve been successful. But to talk about "success" in the context of the AIDS crisis seems terribly misguided. The fact remains that millions of people have died and are continuing to die because of this illness. Most of the clients I had in AIDS cases have died and I’ve lost many friends. So in the larger context of the entire crisis, it’s hard to take pride in these successes. I do feel very honored to have the opportunity to play a small role in contributing my skills as an attorney and an advocate to these important issues. It is enormously rewarding, having the opportunity to do something constructive in the midst of this horrible crisis, to work with such extraordinary people. I’ve never had any comparable professional experience, nor can I imagine one.

In March of 1988, I helped represent the 100 ACT-UP activists arrested at a sit-in on Wall Street. One of those activists, Michael Cowing, wrote in his affidavit to the court a passage that still captures my feelings about my AIDS work: "My friends’ deaths, and the deaths of the [millions] of others who have succumbed to AIDS, cannot and must not have been in vain. With the accumulated pain of so many losses, I have accepted the knowledge and the responsibility that I … must do everything within my power to ensure that others will not have to endure the kind of anguish and torment that my friends did. It is the most loving tribute to their memories that I can think of."