Thursday, June 9, 2011

Pioneers Who Began as Volunteers: A retrospective on the AIDS epidemic at 30

Dr. Lawrence D. Mass (r.) with his longtime partner Arnie Kantrowitz, GMHC’s chief executive officer, Dr. Marjorie Hill (c.), and Janet Weinberg, the agency’s chief operating officer. (GAY CITY NEWS)
Published: Wednesday, June 8, 2011 5:36 PM CDT
I’m honored to be here today to help GMHC commemorate the 30th anniversary of AIDS, and to do so here in GMHC’s new home.

As too many still don’t realize, AIDS remains this great global scourge that has yet to reach its peak. In fact, it is now, alongside the great influenza epidemic of 1918 and the Black Death of Europe, one of the three greatest epidemics in recorded history.

Thirty-five million people have died. Tens of millions remain infected, with rates soaring in various cohorts around the world.

Here in America, people of color, Hispanics, women, urban teens, and gay men remain disproportionately affected and underserved as funding dries up and resources dwindle. Meanwhile, even as so many lives have been saved and normalized with treatment, too many still die and remain gravely ill from AIDS.

Prevention leadership remains invisible and prevention failure has become entrenched.

I turn 65 next week and my memory is no longer so sharp, but I do remember those early days when GMHC was entirely about its volunteers and their work. I remember the endless stuffing of envelopes, with their smudges from my fingers, and the dryness of my mouth from so much licking.

Some of the most vivid images of it all are captured in Larry Kramer’s play “The Normal Heart,” currently enjoying a sensational revival on Broadway. Larry Kramer, of course, was the principal and guiding force behind the establishment of GMHC. He was a visionary with what in those days seemed impossible dreams –– of sea changes in gay life, of waging war on discrimination, injustice, and apathy, of epic battles for services, research, and treatment. He will always deserve a lion’s share of the credit for GMHC’s founding, early organization, and for the brightness of its star.

This play, written before HIV was even identified, before the cause of AIDS was known with certainty, recalls as nothing else does the dread, pain, confusion, anger, suffering, courage, and humanity of our early gay men’s health crisis. Whatever the past conflicts between Larry and GMHC, some reflected fictionally in composite form in characters and incidents in the play, “The Normal Heart” is a must-see for every gay man, for every person having anything to do with AIDS, for every person with a heart.

I also want to mention here my own involvement, because the work of GMHC became all about people doing what they could in the absence of certainty of exactly what was needed. As a physician and writer, I wrote the first, albeit woefully inadequate fliers about risks and precautions, one of which Dr. Brookner throws to the floor as worthless in “The Normal Heart.” I also helped develop GMHC’s first newsletters.

Over time, as HIV was finally identified, I formulated a more incisive booklet, “Medical Answers About AIDS,” which GMHC published over the next ten years in four revisions. It never relinquished my early certainty that we must not become sex-negative.

And each edition ended with a concept that I’m proud of in light of today’s marriage equality struggles –– a plea for what I called “the cultural sanctioning of same-sex relationships as an essential consideration in the long range preventive medicine of HIV/AIDS and other STDs.” Thirty years ago, domestic partnerships and civil unions were only beginning to be talked about, and marriage wasn’t even an impossible dream. Of course, marriage is no guarantee of remaining HIV-negative, but civil unions, domestic partnerships, and marriage can be the same safeguards for same-sex couples as they can for everyone else.

I’m grateful to GMHC for giving me, as it did so many others, the opportunity to make a contribution.

I want to recall several other images of early volunteerism that came most strongly to me in anticipation of this event.

Judy Peabody, who was a key figure in getting the whole buddy system off the ground. I got an insider’s view of Judy, who died last year, via her friendship with my close friend Vito Russo. Judy, as most of you know, was this high society lady, very aristocratically appointed, and well spoken. When I first met her, it was difficult to take my eye off the large emerald and diamond brooch she was wearing.

I thought it both incongruous and brave of her to get involved in something as politically volatile and socially declassee and scrappy as AIDS was in those days, even though as it turns out she had done service work with drug addicts prior to that.

But what really amazed me was the depth of her commitment. Her volunteerism wasn’t just about guest lists or donations. It was an all-out, sleeves-rolled-up, tireless mission. I saw how she was frequently in touch with Vito, always getting feedback about the many aspects of our crisis and the people in it. Her genuine friendship with Vito seemed a reflection of how up-front and personal she became with AIDS and those affected by it.

I remember thinking, “Gee, even if I had her advantages, would I be able to do half the job she was doing?” What I took from the example of Judy Peabody is that this wasn’t about one’s status, one’s knowledge, one’s experience. It was about how much one cared and the willingness to try to act on that.

Which brings us to the next image, of GMHC’s first executive director, Rodger McFarlane, who took his own life in 2009. Rodger invented a lot of the volunteerism we know today. He took it as far as it seemed it could possibly go, and then way beyond that! Of all our losses, there is none greater or more painful.

As stated in the Wikipedia entry on him, McFarlane walked into the offices of Gay Men’s Health Crisis, offering to serve as a volunteer. He began a crisis counseling hotline that originated on his own home telephone, which ultimately became one of the organization’s most effective tools for sharing information about AIDS. Shortly thereafter, he was named as the first paid executive director of GMHC, helping create a more formal structure for the nascent organization, which had no funding or offices when he took on the role.

As summarized by Larry Kramer, who became his closest friend, GMHC is essentially what Rodger McFarlane started –– crisis counseling, legal aid, volunteers, the buddy system, and social workers as part of an organization that serves more than 11,000 people affected by HIV and AIDS. Rodger went on to become a founding member of the New York branch of ACT UP, as well as a co-founder of Broadway Cares: Equity Fights AIDS. In his last major role of public service, he was executive director of the Gill Foundation.

The final of these images is also, for me, the dearest. It’s from Victor Bumbalo’s 1990 play, “Adam and the Experts,” an AIDS play and exemplar of gay theater. It features Eddie, a gay man dying of AIDS. Extremely depressed, to the point of being speechless, he is visited by a GMHC buddy who is on his first assignment. The buddy is very insecure about what he’s doing. When he tries to introduce himself and offer help, he becomes bumblingly inarticulate and breaks down in a sobbing apology for being so incompetent. Paradoxically, this inspires Eddie, the guy who’s dying of AIDS, to break out of his depression shell to comfort his GMHC buddy! Their bond is forged. Moral of this story: The issue isn’t so much about getting it exactly right, or even getting it wrong. It’s about genuinely caring and the willingness to try to act on that.

So let this event be dedicated to these heroes of volunteerism –– Larry Kramer, Judy Peabody, Rodger McFarlane, and to all GMHC buddies and volunteers whose genuine caring and willingness have touched the lives of persons with AIDS and brought inspiration, hope, spirit and soul to us all.

Eddie’s buddy in “Adam and the Experts” was trying to be a care partner before highly active antiretroviral therapy ––HAART –– became available, when the prognosis for AIDS was still universally fatal. Since then, we’ve come a long way, thanks largely to the all-volunteer and activist efforts of the organization Larry Kramer went on to found and lead: ACT UP.

We still may not yet have a cure or preventive vaccine for AIDS, but on the basis of what has already been achieved, these otherwise impossible dreams are sure to come true. All it will take is the decision to take that first step to join in –– to care, to be willing, to volunteer.

In the May 18, 1981 issue of the New York Native, Lawrence D. Mass, MD, published the first written account of an outbreak of a rare type of cancer and other unusual illnesses affecting gay men that, taken together, would in time be known as Acquired Immune Deficiency Syndrome.

Mass and the Native went ahead with the story despite being assured by officials at the federal Centers for Disease Control and Prevention that reports of a “gay cancer” were unfounded. On June 5 of that year, the CDC’s weekly Morbidity and Mortality Report published the first official acknowledgement of what Mass had reported two weeks before.

Mass was among six gay men who met in Larry Kramer’s apartment in 1982 to found the Gay Men’s Health Crisis. The other four founders were Nathan Fain, Paul Popham, Paul Rapoport, and Edmund White.

Fain, Popham, and Rapoport each died of AIDS-related complications.

This article in Gay City News was a speech delivered on June 5 of this year at a Kudos Reception at which GMHC honored Mass for his three decades of activism fighting AIDS.

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