No gold star

Today my friend Tom wrote in One Whole Life,
It is unfortunate it took a deadly virus to bring LGBT people into visibility to society.

You would have to know Tom even just a little to know that it would be really difficult to be angry with him. He is the kind of guy that is so affable, that being upset with him gives one pause. I know that I am the problem or have a problem to even feel a bit irked with him. So, when I read his statement, one very close to something I myself have written, and felt irritation, I knew it wasn’t with him I felt angry, but with myself.

You see, AIDS didn’t bring LGBT people into focus. LGBT people are actually still not in focus. But to the degree that we have been more visible in the past 30 years, it was not AIDS, but we who did it.

By the mid-1980s, HIV infections in the Midwest were having a big uptick. There was a very popular notion among gay men and public health officials, that the transmissions were happening elsewhere and guys were returning home to die. A popular notion, but not a factual one. Among the first people to publicly set the record straight was Larry Kale. One morning the front cover of the Milwaukee Journal showed his face in a photo on page one above the fold. This was big news because Larry had no intention of living small or perpetuating a lie. Larry was a gifted actor and graduate student in the theater program at the University of Wisconsin – Milwaukee. He was a favorite of theater critic, Damien Jacques, who interviewed Larry for this article and many others. Originally from Ohio, Larry hadn’t travelled in some time, but he was infected with the virus. He wasn’t about to be silent about local transmission because it was a public health emergency.

A Jan sandwich between slices of Paul and Gary

A Jan sandwich between slices of Paul and Gary

Within a day or two of Larry’s face appearing on the front of the newspaper, my forever friend, Jan Singer, and I decided we were going to track him down. And we did. He was with a bunch of other gay men with HIV in a ward at County Hospital. I still shake my head in disbelief that Jan and I were allowed to go into the hospital to see patients we didn’t know, each with an infectious disease that was still little known. We went there to meet these guys, find out what they needed, and try to make a difference. I saw almost immediately that several of the guys were experiencing severe symptoms of being over medicated. They were slurring their words, grimacing and contorting their mouths, standing or sitting abruptly, and flapping their hands. What Jan noticed almost at once was the results of their nearly complete lack of being touched

A few weeks later, I saw Larry again, but this time at a Mexican restaurant a few blocks from our apartment. Paul sat fairly quietly at my side at the bar while we waited for a table. This chance meeting was the first of hundreds more get-togethers. Larry and his partner Marty would be mine and Paul’s until they both died, first Larry and then Marty. Our companionship and commitment lasted for fourteen years. Over the course of our friendship, I completed a dissertation on depression in gay men with HIV, got a PhD in psychology, and opened an HIV mental health clinic and an LGBT mental health clinic. The four of us got through cryptosporidium in the water supply. I went to more than two score funerals, but knew 200 more men who died.

In 1989 I collected information for my dissertation, completing a battery of psychometric tests with 50 HIV- men and 50 HIV+ men. Each battery included an interview that lasted from 15 to 60 minutes, along with several standardized mental health measures. Because I had been working in programs for people with HIV since the first days of the epidemic, I got amazing access to people who were incredibly generous with their time. My data collection took under two months. One man with AIDS completed the tests a few hours before he died. I recruited one group of gay African American men who were having a dress-up Tupperware party in the middle of a Tuesday afternoon a few blocks from Fondy Market. Everyone of these men were in plain view of the rest of the world, but it seemed that no one actually saw them. They also were generally not noticed in their passing.

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Paul, me, and Larry

When Paul and I moved to our new suburban home in the late ’80s, it was in part to get some respite from HIV. Gardening became my salvation after Larry, Barry, Lance, Steve, John, and so many other men died. In one year, Paul and I dug a garden three feet deep and varying in width from 5 to 14 feet. We amended the soil and showed off to anyone who would watch our ability to shove an arm into the earth nearly to the elbow, so aerated was our soil. Larry had recently died and I was inconsolable. But Marty was alive, and getting increasingly ill in a very short time. I wanted to bring him home to live with us and knew that Paul would readily agree because they were nearly inseparable. To my surprise, Paul said no. Two decades later, after he was diagnosed with MS, Paul reminded me of this episode. He explained, “If one of us has to have MS, it is better that it is me. You would be a terrible patient, and I would be a terrible care giver.” While he surely shortchanged his assessment of himself, he was right on he money with me. I would be a terrible patient. Back then, however, his decision confused me.

Many have written elsewhere about the silence of President Reagan about HIV. I was among the crowd that first screamed “Shame!” in front of the Whitehouse. I had travelled to DC expressly for that purpose. When the quilted panels of the Names Project were first displayed in DC in 1987, Paul and I were also there. We wept as the elaborate placement of the quilt on the Mall took place. Later, after Larry died, I went again for the unfurling of the quilt. For a variety of reasons, a full name could not be put on a panel without permission of a family member. Larry’s family did not give permission, so his first name was written on a white dove among others from Milwaukee whose families were similarly uncooperative. The man who fought so hard for visibility in his life would be limited in death. My indignation was unbearable. So, the last morning of the weekend exhibit, as the panels were being unfolded, I walked up to a guard and said I was going to sew a stitch onto the panel. He said it was not possible. I gave him an alternative. I showed him my needle and thread and promised I would put in a single cross stitch in the corner of the panel where my good friend’s name was incomplete. He could get some of his buddies to shield me from view, or he could call the police to have me arrested. But, I was certain I would get the damned stitch in before I was carted away. He got a posse to surround me while I washed the stitch in tears.

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Paul and Marty

I am reminded of that stitch as I see our international response to the Ebola and Zika viruses. While these are so much more rationally handled today with none of the silence surrounding HIV, it strikes me that clearly missionaries and pregnant women or Olympic athletes are more important than gay men. But, I confess that the most galling aspects of the response from the World Health Organization and the CDC today about these newer infectious diseases is that they do not honor those who died with AIDS by acknowledging what they learned from them two decades ago. Neither do those benefitting from drugs approved through fast-track protocols recognize that this system was won through the desperate fighting of lesbians and gay men who battled the FDA in the 1980s. Drugs for arthritis and other autoimmune disorders come from the knowledge gained addressing HIV. We need to thank the dead for them.

Somewhere in the early-1990s, representatives of a national study contacted me to participate. It was research on complicated grief and multiple loss, an emerging diagnosis associated with HIV care-givers. I recall being interviewed by phone two or three times. Then I was notified that because of my work in Milwaukee with mental health, HIV, and cryptosporidium, I would need to be excluded. I had just had too much loss for their study on multiple loss. I knew I was screwed. Around that time I stopped seeing new clients with HIV, and I drastically reduced the number of LGBT clients I saw. Instead I increased my family therapy case load with heterosexual people. I was just too sad and too angry about HIV.

My ongoing involvement with HIV took the form of administrative work, planning, and community-level interventions. I learned a great deal more about public health, and I opted to form partnerships with local, state, and federal public health programs addressing HIV prevention. It was heartening to see that Act Up was pushing the Catholic Church and the FDA to get out of the way of us saving our lives. But it was equally galling that Larry Kramer would be leading that charge from his privileged and precious existence in the Hamptons. It was also really aggravating to see resources going predominantly to the coasts and not the Midwest. The same movement of financial resources out of the Midwest is happening again in 2016, in part because the CDC has decided that medical care is prevention. It is not. In this case, medical care is part of an algorithm that masquerades as prevention while it devalues the lives of individuals.

What I have discovered in this account of some of my experiences with HIV in the first 20 years of the epidemic is why Tom’s comment bothered me. While I am deeply grateful for what lesbian, gay, bisexual, and transgender people have done along with our allies during the age of AIDS, I regret that we are still so regularly devalued and unseen. Just this week, there was a Davey Wavey video circulating in social media. The clip features the social media celebrity critiquing younger gay men who express disgust at being looked at by older gay me. The video rightfully suggests that older LGBT people fought for rights enjoyed by the very younger gay men who are disgusted by them. I have no grievance with the video, except this: We older gay men are mostly surprised to be alive.

500,000 of us have died in the US from AIDS since 1981 and few people actually seemed to notice. Our care has been expensive. Our contributions to public health and medical research have been plentiful. Still, we are expected to move on, to get over it. People look at us incredulously when we express anger toward Ronald Reagan, the Nero of our burning Rome.

Sorry, Tom, I am angry that we have still not succeeded.

2 thoughts on “No gold star

  1. Dear Gary – thank you for reminding me of the vitality and importance of the men I worked with and played with during my time at MAP and beyond. I was touched by the warmth and acceptance I felt, as well as the necessity of the work we all did together.

    Liked by 1 person

  2. Chris, you were then, and have remained since then, a constant conspirator in the efforts to address this epidemic. When the number of deaths continued to grow, your matter-of-fact approach to do the next thing needing to be done proved an effective model of action for scores of others in the fight. Thanks.

    Like

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