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Spencer Cox, Iconic HIV Activist, Through the Eyes of His Mother and His Friend

A Conversation With Beverly Cox and Peter Staley

September 12, 2013

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Peter Staley: Right. So we waited until they had finished this long session of CPR. Then they finally said, "OK, you can go see him." And we went in there. He really looked like he had been through the wringer. He just wasn't there anymore. He was on complete life support, and it looked like he had been through the wringer, as far as them continuing to do these, kind of, really brutal sessions of CPR.

Tim and I said, "Please, don't do any more of those."

And then, within 15 minutes, they came out and said he was gone.

Terri Wilder: After Spencer's death, people seemed to reconnect together -- folks who had not seen each other in a while. And the Medius Working Group was formed. I know that they had an event in May addressing long-term survival. It seems that Spencer's death has brought the community back together. It seems, as tragic as it was, there was a purpose to it. It almost feels like it stimulated something to happen.

Peter Staley: Again, it's horrible that a tragedy [was needed to bring this about], but so much has come out of this, and continues to, that it's very ... it's a wonderful coda; let's put it that way.

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Beverly Cox: I continue to be amazed myself. I've talked to friends and I've said, "It's like he's still giving."

One of the examples is, I have a client who is a therapist. Actually, I'd never met her. We'd spoken, but it was only on business. I never said anything personal to her. I never told her I had children -- nothing.

So this year, she mailed her information in and then she called me and said, "Could I come pick up a copy of my tax return?" I said, "Sure, and we'll get to meet." So she came in and she sat down and we started talking. She's very interesting.

I said, "I have a son who passed away right before Christmas."

She said, "I know."

I said, "You know?" She didn't even know I had children.

She said, "I connected the dots. I started reading about him." And I showed her the playbill of his memorial. She said, "Do you mind if I have this? Do you have more?" I said, "No, you're welcome to keep it."

She went back to her office and she emailed me. She said, "I so appreciate your speaking to me about Spencer. The reason I asked you for a copy of the playbill is because I have patients with AIDS. I'm going to use this to show them that just because you have AIDS does not mean you can't accomplish things."

She'd seen the interview that David France [director of How to Survive a Plague] put out about his thoughts on life; she said, "I'm going to use that in my therapy also." And I thought: He's still helping people.

Peter Staley: Some of the things that have come out: First of all, the memorial was extraordinarily beautiful.

Beverly Cox: It was stunning.

Peter Staley: There was a line around the block. I was stunned by the turnout. And everybody afterwards was like, "We really miss each other." So it was a wake-up call that we had all lost touch. We had lost touch with Spencer. And we lost him before we knew it.

So some ACT UP alumni formed a committee, and started planning for a series of reunions, including the first one they did the weekend before Gay Pride, which was the quote-unquote, non-reunion reunion, that was over 350 ACT UP alumni, including Larry Kramer and all the regulars. That was just beautiful, absolutely beautiful. And they plan on doing more events in the future.

One of the things that Spencer pushed for in creating the Medius Institute for Gay Men's Health was actual research. "Give me the data," right? He wanted research really defining what the needs are of his generation. So Judy Rabkin, who is a great AIDS social science researcher, has been working with TAG to design a social science clinical trial, which has already gotten institutional review board approval. It will interview at least 200 ACT UP alumni, with a control group, to see how we are doing as a group, and what our needs are, and what our issues are -- both the good and the bad -- and how we were affected by that experience. So that study is going to happen.

Beverly Cox: I think Spencer would have been so proud of that, and would have loved to have been in the middle of it.

Peter Staley: Yeah. I mean, that's what he was calling for.

Beverly Cox: As a matter of fact, when he was living with me, we spoke about the deaths. I said, "Spencer, I'm sure you saw so much that a person really shouldn't have seen." And he said he did.

Peter Staley: The community forum that the Medius Working Group put on in May at Baruch College, titled "Is This My Beautiful Life? Perspectives From Survivors of the AIDS Generation," that had over 500 people in attendance, that continues to have some extraordinary ripples.

Recently, Medius Working Group called together, at this gorgeous conference room at Broadway's Equity union's meeting room, off Times Square -- we asked all the co-sponsoring organizations of the forum to send their high-level leaders, their CEOs. And we got amazing attendance. GMHC was there; amfAR; the LGBT Center; Sage; Harlem United, Callen-Lorde Community Health Center -- and on and on. All these AIDS groups across New York City came together.

We threw it to them and we said, "Listen. What did you hear at this forum? And what are you doing now to meet the needs of this generation? Or what would you like to do that we can all figure out how to implement?" We even had representatives from the City Council there, and from Christine Quinn's office, in case there were things that would be a good match for New York City to help fund. There were some great ideas put forward. And there's going to be a lot of follow-up on that that's going to happen.

But one of the most interesting things that happened that night was that these groups kept remarking, as the night went on, how useful it was to hear from each other on what they were doing. I was on the stage, and I was stunned. I said, "You mean you guys don't meet on a regular basis?" These are the leading AIDS groups across New York City. I thought that there was some mechanism by which they were sitting across from each other on a regular basis. But there wasn't. And I was, like, wow.

Spencer has gotten everybody in the room. And one of the bullet items that came out of that is we're going to set up some sort of mechanism, a New York City AIDS lobby, as it were, where these CEOs can be in touch with each other on an ongoing basis, and coordinate their efforts. You would think that that had been happening, but it hadn't. And now it will. And this all came out of that. So it's incredible.

Beverly Cox: His death, as awful and as shocking as it was to us, it is a comfort to me to know that it did stir things up like this.

He did miss the camaraderie, I can tell you, of the group. Because I think he lost that.

Peter Staley: Yeah, we all did. We all did.

Terri Wilder: I was at the event in May at Baruch College. One of the things that I walked away with -- and Peter, you even addressed it when you were speaking on the panel -- was that a lot of this is about trauma. It may be untreated post-traumatic stress disorder [PTSD]. And calling for trauma-informed care, and being aware of the long-termers who "survived the plague," that have been forgotten. I've certainly had friends in my hometown of Atlanta, Ga., say, "I don't feel like there's a place for me. I got infected in the '80s or the early '90s; and when I walk in, I feel like I'm just the old gay guy with AIDS. They don't really know what to do with me. I witnessed so much, and I don't really have anybody to talk to about it with."

Peter Staley: Right.

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