November 1996
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She litigated for our right to medical privacy

["Denise Denise McWilliams jokes that she wanders the streets with an easel and pointer, looking for a meeting; that's what she and the agency she directs, the Boston AIDS Consortium, specialize in. The 44-year-old Cambridge woman has been at the helm of the BAC since 1992, when she left GLAD's AIDS Law Project, which she directed for six years. While at GLAD, she litigated precedent-setting cases around HIV testing and privacy, particularly with regard to the insurance industry. At the BAC, which started in 1988 as a project of the Harvard School of Public Health but is now an independent agency, her mission is to bring together "work groups" of AIDS professionals to brainstorm solutions to various problems. A work group led by Jonathan Scott of Victory Programs, for example, is exploring how agencies can help people with complicated lives stick to their grueling drug-taking regimen.

One in Ten: Do you remember the first time you heard about AIDS, or what would later become known as AIDS?

Denise McWilliams: The time I first heard of it, I was a legal services attorney in Fall River. A friend of mine had visited from New York City, which of course got the brunt before Boston even knew there was a problem. It must have been in late 1980 or early 1981, because I think it was still in the GRID (Gay-Related Immunodeficiency Disease) stage. He came here and was saying how a lot of his friends in New York were dying very mysteriously. And I remember him saying that they didn't know what it was, but it must've been caused by track lighting and industrial carpeting. It was a funny gay joke, but I look back and think, "Oh, God, would that had been true." He died just two or three years ago.

OIT: What were some of your first cases at GLAD?

DM: Most of what we were dealing with at that point involved really outrageous cases of discrimination. From a legal perspective, they were actually very simple cases. Somebody would say to their boss or to a dentist, "I have AIDS," and they would say, "I don't want you here. Go away." The factual stuff was always very easy. The problem was in establishing what the legal protections were and what the legal consequences were for that sort of thing.

One of my first cases -- in fact, the first AIDS case where the Massachusetts Commission Against Discrimination found probable cause for investigation -- was a man named Stephen Dutil, who worked at a bank in Worcester. He had gone out on disability. And at the time people thought, you get diagnosed with AIDS, you die. Steve, I think, thought that was gonna happen, but after a month or two felt better, and very much wanted to go back to work. He approached his employer and his employer said no. They offered to continue paying his salary and his benefits as long as he lived, so it wasn't the sort of thing where they're going to cut you off and hang you out to dry. Unfortunately, in the middle of [the case], Stephen died. Nobody felt vindicated. To their credit, the bank after that became pretty devout converts to the cause of AIDS education in the workplace. But it didn't do a damn thing for Steve.

OIT: How did your cases change over time?

DM: People got a lot more sophisticated. The lesson you always hope people learn is that you don't have to discriminate; there's no reason to. Or at least that if you do it and get caught, you're gonna get nailed. Unfortunately, what they do learn is how to do it without getting caught. So it became increasingly sophisticated. Dentists began referring people out for what they said were complex problems. I had one client whose local dentist assured her that her dental problem was so sophisticated he couldn't begin to resolve it. He referred her to -- I think it was Brigham and Women's dental unit, and when she got there it turned out that the "serious problem" was a piece food trapped in her filling.

OIT: What do you think some of the most significant developments in the epidemic have been?

DM: From a legal perspective, it's clearly established, at least on paper, that folks with HIV -- in fact, with any disability -- are entitled to an individual assessment. People are to be judged by what they do, not who they are. That's critical. And I think the second development is a greater awareness of the privacy issue. Again, HIV was one of the first diseases where people started asking, "Why do you need to know this information? What is the relevance? Why are you asking me this?" Now, as you look at the increase in computerized data banks, the information itself is a marketable commodity. AIDS has made us all very sensitive about the privacy ramifications of that. The third element is that AIDS in some ways was the first organized assault on the insurance industry. The insurance mentality is, "We want to provide insurance to all people who will never need it." People with AIDS were the first organized client base that said, "We had a contract. We have made payments for a certain amount of time for services that you claimed to provide, and we need them. And by God, we're gonna make sure you do it."

OIT: Do you think Boston has been different, has distinguished itself in any way in how it has responded to AIDS?

DM: One thing I consistently hear from people across the country is that we do a better job of cooperating with each other. In many other places, either folks are at each other's throats -- I hear stories coming out of New York and San Francisco and I just think, "Thank God I don't live there" -- or there's this strong party line and nobody dares speak out against it. We actually have a nice balance between those two situations. We can have rigorous debate -- and we do -- and people who disagree with a decision can walk away and say, "Well, I disagree with that. I don't think anybody was evil, I don't think anybody was stupid, I just would've come to a different conclusion."

OIT: How do you think AIDS has affected you on a personal level?

DM: With the [advances made in] new treatments, any normal person would say, "Oh my God, that's so exciting." But for many of us who have been doing this, it's so hard to let yourself feel that excitement, because you don't dare to begin to hope. The level of detachment from any sense of "God, this could be great" is so scary. And the other thing you think is, why now? Why not three months ago? There was a guy at AIDS Action, Paul Mitchell. Why did it come after he's dead? For those of us who don't have a religious affiliation, there's no good context for this.

P R O F I L E S, Boston-area AIDS activists: Larry Kessler | Max Essex | Denise McWilliams |
Matt Florence | Ray Schmidt | Ken Mayer | Barbara Gomes-Beach | Brian Rosenberg

T I M E L I N E, 1981 - 1985 | 1986 - 1989 | 1990 - 1996 | The N A M E S | AIDS L I N K S

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