“There was such a terrible sense of urgency”: Guest Post on AIDS Activism by Ingrid Nelson and Liz Highleyman

There are some amazing events happening in San Francisco this weekend, commemorating important events in the early AIDS activist movement (specifically, the 25th anniversary of the 6th International AIDS Conference in San Francisco, and ACT UP’s week of protests). This is important and fascinating history, well worth knowing and remembering. If you’re interested in queer history or the history of street activism, and you’re in the San Francisco Bay Area this weekend, I urge you attend at least some of these events if you can.

There’s a great article in the Bay Area Reporter by Liz Highleyman about ACT UP, 6th International AIDS Conference protests, the history of AIDS activism, and the reasons behind this weekend’s commemorative events. (A full calendar of the weekend’s events is in the article.) She interviewed my wife, Ingrid Nelson, a nurse practitioner specializing in HIV — but as is almost always the case with reporting, only a small portion of the interview was quoted. Liz and Ingrid have given permission to quote the interview here in full.

Liz Highleyman: Why were these events so important at the time?

Ingrid Nelson: Because people were desperate for scientific information. There was no Internet! These were the early days of patients learning to be their own advocates. They wanted to find out what drugs were being studied, what clinical trials they might qualify for. And they wanted input into where the research should be focused in the first place. There was such a terrible sense of urgency, and so little access to information. It was a terrifying time.

Why is it important to remember them now 25 years later?

It would be such a shame if all this history were lost. Our community was so traumatized, and I think it’s too painful for a lot of survivors to talk about now. People lost their lovers. Multiple times. They lost entire circles of friends. And many were estranged from their families of origin. It was like a war, except it was invisible to the rest of society. I think those of us who are still here, who are able to, feel a sense of obligation to speak up about it. We want people now to learn from what we accomplished, and also from our mistakes. And we are passionate about honoring and remembering our fallen comrades.

What did the protests accomplish?

We did get passes into the conference for people with HIV and AIDS. Many conference attendees — medical providers and scientists — stood up and publicly joined their voices with the activists, during Peter Staley’s speech. Research protocols became more open, and parallel tracking speeded things along. We got tons of news coverage that was very much on message. We brought issues of race, immigration, poverty, and sexism into the discussion. And huge numbers of queers from the community showed up and got arrested for their first time, and became lifelong activists starting with that week.

Do we still need AIDS activism today and if so why? What issues remain?

silence equals death poster
We didn’t have the word “intersectionality” back then, but that’s what the ACT UP/SF philosophy was all about. It wasn’t enough to just demand “drugs into bodies,” like the treatment activists used to say. You had to ask “whose bodies?” One of our fears was that AIDS might become a two-tiered epidemic, and that’s exactly what is happening now. We have effective treatments, but we don’t have equal access. If you have HIV but you are poor, or a person of color, or trans, or a woman, or a youth, or in prison, or mentally ill, or a drug user, or an immigrant, or homeless, or a sex worker, or live in an isolated rural area or a resource-limited country, you are more likely to get sick and die. There is still tremendous stigma and shame and invisibility. People have this idea that HIV is a problem that has been fixed. We need to shatter that myth. We need to educate the public about the “cascade of care,” and realize that the biggest gap is in retention of patients in primary HIV care.

Any anecdote or event you found particularly inspiring?

There are so many. The INS protest was amazing. The PISD caucus going over the barricades was such powerful symbolism. Seeing so many men getting arrested at the women’s demo was extremely important and meant a lot to me personally as a member of the ACT UP Women’s Caucus. I also loved the red paper chains that the women wrapped around themselves — that was a wonderful visual. Peter Staley’s speech from the podium was huge, and possibly the first time a person with HIV had spoken from the main stage. I remember Peter asking the con attendees to stand up and chant with us, and a lot of them did. I remember him saying (not exact words, but close) “someday, people will talk about how there used to be a terrible disease. But there were some very brave people who fought back.” I will never forget shouting down Louis Sullivan. Our feelings about that were complicated — we believed in free speech, and we didn’t like the idea of a group of mostly white people shouting down a black man. But we talked through all that, and we ultimately decided that the federal government’s inaction was so grotesque, and so criminal in the face of so much suffering and death, that in this case it was justified. That symbolizes so much about how we all felt then — that we were literally fighting for our lives, and that therefore all bets were off and the old rules didn’t necessarily apply. Drastic action, as long as it was nonviolent, was absolutely called for and was entirely appropriate.

I also remember when the con was over, and we all marched to Market Street and essentially crashed the Pride parade. We always refused to get any type of permits for our protests — it was against our principles, and we made no exception for Pride. We didn’t know exactly what the crowd’s reaction would be — there were some people in the LGBT community who disagreed with our tactics. But that march felt like our own ticker tape parade. We got nothing but cheers and thumbs up the whole way. I remember turning and saying to someone marching next to me, “it’s such a lie that this community hates us.” We did our usual routine of “dying in” at regular intervals, and drawing chalk outlines around each other’s bodies. It’s one of my most vivid and proud memories of those times.

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“There was such a terrible sense of urgency”: Guest Post on AIDS Activism by Ingrid Nelson and Liz Highleyman
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2 thoughts on ““There was such a terrible sense of urgency”: Guest Post on AIDS Activism by Ingrid Nelson and Liz Highleyman

  1. 1

    ” If you have HIV but you are poor, or a person of color, or trans, or a woman, or a youth, or in prison, or mentally ill, or a drug user, or an immigrant, or homeless, or a sex worker, or live in an isolated rural area or a resource-limited country, you are more likely to get sick and die. ”

    I’m HIV positive. When I got laid off and had to go shopping for insurance on the Washington exchange, I took a good look at how the offered plans treated HIV meds, and was appalled. Just about every plan treated drug therapy as a “specialty medication,” which meant a co-pay of between 20% to 35%, depending on the plan. Given that a 30 day supply of what I’m taking retails at my local pharmacy for around $2600, I would have had to spend at least $520 a month — on top of the premium and on top of the cost of seeing a doctor — every month. And there is a growing trend to require that patients get their meds by mail-order, where the drugs can either be left in a hot mailbox all day ready to be stolen (HIV meds are heat sensitive and will degrade in such conditions) or have them delivered to their place of employment, where the mail room will probably open the package and destroy any shred of patient confidentiality.

    With a lot of research I found one plan, out of the two dozen being offered, that treated HIV meds like an ordinary prescription. One: a premium gold-tier plan that’s expensive but at least cheaper than a 20% co-pay. And it will only be getting worse as insurance companies make better use of the MANY flaws in the “Affordable” Care Act.

    So, yeah, HIV/AIDS activism is still very, very much needed. I’m a reasonably privileged person in a state that actively promotes the availability of health care insurance, and it was difficult and expensive to get the meds I need to stay alive. I cannot imagine what it must be like for others.

  2. 2

    A little too polite on one point though:

    “ACT UP/SF, however, split in the fall, with some members wanting to focus on HIV treatment while others favored a broader social justice agenda. The former group started ACT UP/Golden Gate (later renamed Survive AIDS), while the latter group dwindled in numbers and eventually became dominated by AIDS dissidents.”

    Those ‘dissidents’ were HIV denialists and they dwindled because they refused effective treatment and died. That such a vital, important, movement could be split by pseudoscientific craziness is another layer of tragedy. Another failure to face the epidemic frankly and teachably.

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