AIDS at 30

AIDS at 30: West Hollywood Mayor John Duran Rides in AIDS/LifeCycle 10

Karen Ocamb — Tue, 21 Jun 2011 20:30:00 GMT

West Hollywood Mayor John Duran talks about AIDS and riding in AIDS/LifeCyle 10. Richard Zaldivar from The Wall Las Memorias is behind him. (Photo by Brett White courtsey the city of West Hollywood)

(UPDATED for video) Openly gay West Hollywood Mayor John Duran, who has been living with HIV since 1994, is one of only three HIV-positive elected officials in the country. At a news conference announcing that he is riding in AIDS LifeCycle 10, Duran said that he has lost more than 100 friends to AIDS during the epidemic.

“If I can help raise more badly needed funds by placing my tailbone on a bike seat and pedaling to help save lives, I am all in!” Duran says.

During the late 1980s and early 1990s, Duran, a civil rights and criminal attorney, was the chair of the LIFE AIDS Lobby, the statewide LGBT lobbying organization that became LIFE Lobby, the predecessor to Equality California where he also served as board chair.

Duran – who has raised $18,900 for AIDS LifeCycle 10 – has been amusing his friends on Facebook with regular updates on his training. He is expected to continue to post about his adventures as the tired rider at the back of the pack.

In late 1989, as a civil rights attorney in Orange County, Duran had to be escorted out of the Santa Ana City Council meeting after he argued for the right of LGBT people to hold a Pride parade in that area. Sheldon and company surrounded Duran, placed their hands over his head and “prayed” – “Out, Satan, Out!” Shortly thereafter, the White Aryan Resistance plastered his law office with Nazi stickers and tried to burn the office down. I reported on what happened and asked him if he was afraid. He was. John’s law partner pictured with him in showing the WAR sticker died of AIDS.

AIDS at 30: David Reid on Transgender AIDS Diva Connie Norman

David Reid, producer of AIDS Watch — Wed, 29 Jun 2011 17:24:00 GMT

Transgender AIDS Diva Connie Norman kissed by Winston Wilde, author/AIDS activist Paul Monette's partner (Photo by Karen Ocamb)

This is one of the most concise bios you can find on Connie Norman:

“I often tell people that I am an ex-drag queen, ex-hooker, ex-IV drug user, ex-high risk youth, and current postoperative transsexual woman who is HIV-positive.” —Connie Norman

Born in Texas, Norman fled to Hollywood at the age of 14. Having recovered from drug addiction, Norman underwent therapy and then a sex-change operation in 1976. She began her political life as an AIDS and Queer activist with the Los Angeles chapter of ACT UP. In 1991 she transformed the media landscape by becoming the first openly queer host of a commercial talk radio show. "The Connie Norman Show” aired daily on XEK-AM where she was able to share her views on LGBTQ and human rights issues. In 1993 Norman became the first transgender Director of Public Policy at AIDS Service Center in Pasadena, a California non-profit agency. Norman’s reach was broad, as she also co-hosted an LGBTQ Cable TV program and was a newspaper columnist for a San Diego publication. Because of her unyielding activism, she was honored with awards from various groups including the City of Los Angeles, County of Los Angeles, California State Senate and California Assembly. ACT UP/LA never gave an award or honor to anyone except Norman. Just before her passing they made official her self-proclaimed status as “AIDS Diva." Her ashes were scattered on the lawn of the Clinton White House as part of the national ACT UP “Ashes Action” on October 13, 1996. Her legacy is sustained by Christopher Street West who established the Connie Norman Award to honor an individual or organization for outstanding achievement in fostering racial, ethnic, religious, and gender unity within the LGBT community.

It doesn’t do her justice, but in today’s short attention span world it covers the bases.

She was all this and more. I first met Connie at ACT UP/LA. It was 1987.

She had a mouth on her. Thankfully it was connected to a mind. And she was a she; on many occasions I heard her say, “I paid $50,000 to be who I am and I get to pick my pronouns.” She picked her battles, too.

We first become closer when we spent the night together.

It was outside of County/USC hospital in downtown Los Angeles, a monolith you must see to believe. The protest was aimed at the County Supervisors to designate more beds for AIDS patients. There were ten beds quarantined for the purpose. At the time there were over 6,000 known HIV+ cases. ACT UP/LA organized a sleep-in. It was a seminal bonding experience for the group. And Connie and I became friends.I didn’t know much about transgender then. I knew Connie had started life physically as a male always knowing she should have been a female. She made the surgical transition to become herself at the age of 27.

Connie Norman talks to passerby at ACT UP's protest outside the Reagan Library (phot by Karen Ocamb)

I often tried to imagine her as a gay boy growing up in Texas.

We were not good friends. Not yet. I was a little to mainstream gay for her. I was on the Board of GLAAD/LA. She was trying to shut down the FDA. I worked a job with a paycheck, she had the good fortune to fall in love with a man, Bruce Norman, who was able to support her full time activist work. But circumstances would put us very close together.

A group in L.A. contracted with a Tijuana radio station (XEK-950 AM) to rent their signal and start a new talk station. This was long before Glenn Beck. Rush Limbaugh was not a household name. And the gentlemen that approached us were not pro-gay by any means, quite the contrary. But they were sharp business people. Well, enough that in a market where the FCC isn’t issuing new radio frequencies, they found a way to get a signal in this market. And “The Connie Norman Show,” a title I had to argue with her to use, was born. Arguing doesn’t begin to describe our conversations. She wanted a different show name, something more for the community and all-inclusive. I won.

So on November 25, 1991 “The Connie Norman Show”—the “first week-nightly Gay & Lesbian Talk Radio show in America”—went on the air. (B, T & Q had not joined the community alphabet yet. A bit ironic considering).

I was asked to be the producer on the show by David M. Smith from the Gay & Lesbian Center, then a two story hodgepodge on Highland Avenue, south of Fountain. Nothing like the buildings today. David knew I had a background in radio and no one else in their right mind would tackle the task. My “day job” allowed me a lot of free time to devote to the show.

Connie Norman interviews David M. Smith during her radio show's premier (Photo by Karen Ocamb)

We launched early that day, I’d say around 4p.m. Lots of media, lots of hoopla. Then a snag, the phone lines for callers—it was, after all, a call-in show, weren’t working. So Connie vamped and filled for half an hour with a few of the community dignitaries there for the event. We decided to move the “live” show to the studios. That was 15 blocks and 15 floors away. It was my “driving” through the back streets of Hollywood that brought me a whole new level of respect from Connie. We made it in mere minutes. And we were off to the races.

Producer David Reid talks to Connie Norman about call-in difficulties (Photo by Karen Ocamb)

We took a roadshow version to San Diego. Mere miles from the Mexican border, the signal was very strong. We had a “live” four hour show. A crowd turned out to watch. Easily a hundred. Seeing this reaction truly inspired Connie. Radio is tough when you doubt if anybody is listening.

This turn out turned that tide. And the volume of calls each night let us know it was working. We were reaching.

Everybody wanted to use her momentum. A big homophobe of the time, Wally George, had a local (albeit in the number one television market in America) rant show on KDOC in Orange County. He wanted Connie on his show. We agreed—only if he would in turn do our show. And if we got to bring half of the 50 or so in the studio audience he always had—usually a rag tag bunch of late teen/early 20’s thug types. His audience made Jerry Springer’s look like a Sunday social. It was somewhat of a miracle a fight didn’t break out.

Connie Norman with radio ranter Wally George (Photo by Karen Ocamb)

Our side held them at bay with wit and gay repartee. Both Wally and Connie had to talk to the audience about fairness and civility before we went on. But it was quite the hour. Connie more than held her own. And Wally George kept to his word and trekked up to Hollywood and did two hours of our three hour show. He wanted to do all three but we thought better of it. The only caveat was we would not discuss his daughter, actress Rebecca De Mornay. Connie agreed to this. When Mr. Blackwell guested he said he would walk out if we brought up his mother. But he did come out on the show—which surprised no one but it gave us a little more credibility.

We had volunteers help screen the callers—and we had callers. We did not deny callers airtime, everyone was welcomed—but a lot of giggly teenagers would call or people wanting to talk off topic. We had several great shows that sprang from these conversations.

We also had battles over radio fundamentals. Connie often would refuse to identify herself or the show before the commercials breaks – much because she wanted to be different. We were different enough: some radio basics still apply. And this was a commercial operation. She was getting a paycheck. So each break we segued with “You’re listening to ‘The Connie Norman Show,’ America’s only week-nightly Gay & Lesbian talk radio show.”

There were lots of highlights: callers that got through to her only to yell, “You fucking faggots will all burn in hell,” or some such diatribe. And Connie would launch off on a tirade that was just poetry.

There was the night with Robin Tyler. The conversation went where for what reason I don’t recall now—but both women did the second hour of the show topless. We had other transsexuals on the program. And through these visits we learned that Southern California was a hub of post-op transsexuals—with a disproportional amount of transsexuals working in the aerospace industry. Connie posited that people able to come to reason with themselves and realize nature made a slight mistake were of a mind strong and wise enough to work in such a field.

There was a double page ad that ran in the L.A. Times and the Wall Street Journal for BMX. Big bucks. It showed the interior of the latest greatest Beemer with the radio station tuned into 950 AM. Quite odd to have an AM station in the graphic. We learned later this was not happenstance. Just a couple of major ad execs that wanted to pay homage.

Connie Norman with her friend Harry Hay, co-founder of the Radical Faeries (Photo by Karen Ocamb)

We got calls from as far north as Shasta, yet couldn’t reach much of West Hollywood and Silver Lake. Radio signals on the AM dial, especially the ones coming from South of the border, take all sorts of bounces. But we reached enough the phone lines were rarely open. And many nights Connie would stay after signing off and talking to people struggling with the closet. Or HIV.

The FCC was not pleased with this Mexican radio signal coming across the border illegally. But there was little they could do. Instead bad management took care of things for the feds.

Then the furniture started to disappear. Other hosts were being let go; repeats of our show played throughout the day. Connie’s paycheck bounced. She wanted to walk. We kept on going despite her wanting to show them they couldn’t treat her that way. And then there was a sheriff’s lock put on the station doors. This was on the 15^th floor of the building at Sunset & Vine. It wasn’t a shack in some warehouse district.

We tried to get another station to pick up the show. If the Internet had been viable then, we would have gone to a webcast. Instead we just went off the air. No fond farewells for the faithful. No time to say goodbye.

Connie went on to continue the fight for HIV/AIDS drugs to be release. People don’t realize the change AIDS brought to the way the FDA does business. And drug trials. HIV patients demanded to be guinea pigs. Many were in that fight, but Connie was near the front of the line.

Connie Norman with fellow ACT UP friend Mary Lucey, a lesbian with HIV (Photo by Karen Ocamb)

A now-closed HIV center at Cedars hospital was opened by AIDS Healthcare Foundation in her honor.

Connie was 47 when her t-cells dropped low enough that it was time to simply rest. She was a resident/patient of the Chris Brownlee hospice. She had fought the battle to take this old World War II facility and turn it into the haven of caring it be became. It’s not there anymore. The need has diminished. But it was a remarkable place in a world that still treated people with HIV like pariahs.

Connie mentors AB 101 hunger striker and PWA Rob Roberts (Photo by Karen Ocamb)

Connie spent most of her time those last few months thinking. She tried hard not to get herself get riled up. We spoke often about how shitty it was to end the radio show like it did, a whimper instead of a bang. We certainly went into it with a bang.

Connie was a chimney. She smoked a cigarette like it was an oxygen line. During the radio days at every break she would hit the lobby and light one up. Taking it down to the filter in less than the 3-minute commercial break. Life in the hospice didn’t change that.

Connie Norman at AB 101 hunger strike site with hunger striker Rob Roberts (in red), former AIDS hunger striker Wayne Karr, and ACT UP friend Patt Riese (Photo by Karen Ocamb)

Connie died. And it was such a shock. If anybody was to rally back, we thought it would be Connie. She was one of a kind. She even found her husband, Bruce, a new lover to replace her.

Connie Norman is remembered and honored annually at the LA Pride Parade. A transgender activist is honored in her memory. As each year passes when I see the honoree ride down Santa Monica Boulevard, I can’t but help wondering if anybody in the crowd remembers who Connie was or has heard of her work.

The last time I interacted with Connie Norman was in October 1996. Following a march from the U.S. Capitol to the fence around the White House—she and several other activists had their cremated remains thrown over the fence in protest. To the very end she made a difference. Or tried to. She never quit trying.

AIDS at 30: Keiko Lane on ACT UP/Queer Nations Cory Roberts

Karen Ocamb — Tue, 21 Jun 2011 20:25:00 GMT

ACT UP/Queer Nation's Cory Roberts swarmed by the LAPD during an AB 101 protest (photo by Karen Ocamb)

The Unimaginable Future

By Keiko Lane

“You need gloves,” was the first thing Cory said as I walked into his house. It was Los Angeles 1991, the first week of queer street rebellion in response to then-Governor Wilson’s veto of AB101, the bill that would have outlawed workplace discrimination against gays and lesbians. Cory had been arrested and badly injured by the LAPD. I was preparing to bandage his wounds.

“Let me see, first,” I said, taking of my jacket.

“Gloves. Don’t argue,” he said, tired and pissed off. As close friends and comrades in ACT UP and Queer Nation, we loved each other fiercely and argued constantly. I rummaged through my bag, which in those days always contained latex gloves—both a safe-sex prop and a precaution against blood contact when taking care of police-inflicted injuries. Cory peeled off his T-shirt and jeans. Even though I had seen him injured before, and seen other ACT UP and Queer Nation friends injured in demonstrations, I still gasped at the damage to his thin body. He was covered in scrapes and bruises, his joints swollen where the police pulled his limbs in unnatural directions before they cuffed him too tightly, cutting off the circulation to his hands.

For hours I washed his wounds, some of the scrapes breaking through and bleeding, some of the bruises so deep and pushing against the boundaries of his skin that they bloomed like the KS lesions we had tended to on other friends. The gloves, slippery with antibiotic ointment, made holding onto his limbs too difficult. I took them off, without him noticing, gently stretching his arms trying to assess the damage to his joints, and whether any of the muscle micro-tears and spasms were protecting severed ligaments. I worked limb by limb, ice packs against the deeper bruises. Eventually he slept.

Twenty years ago. Twenty years—almost the lifespan of some of my graduate students. Here’s what happens almost every time I teach my Queer Bodies in Psychotherapy class to graduate counseling psychology students in San Francisco: There’s at least one person in the class—an elective –doesn’t know anyone who has died of AIDS. And most of my students are queer. I don’t know how to feel about this.

There is a small part of me that wants to feel hopeful, that wants to believe it’s because the dying has ceased, that the plague now really is a chronic manageable illness, that infection rates are slowed. But this is a fiction. We know that infection rates have not slowed, but that the demographics have shifted, first in primary risk slightly away from gay, white and affluent, toward communities of color where HIV infection is often co-occurring with other issues of marginal survival, and now rising again in multiple overlapping—and not-overlapping—communities.

In my class we talk about the psychological impact of infection and the various kinds of needs expressed by members of different communities who students might see while in their psychotherapy training internships.

Psychoanalytically, infection is symbolic. It is also literal, somatic. I tell stories, as do some of my students who lived through the queer and AIDS activisms of the 90s. Rebellion, as a tool of empowerment and a fight against the loss of agency, was sometimes successful. Rebellion as a defense against grieving was not. And so in class, we also talk about loss. Or I do.

Cory roberts (l) with other Queer Nationals (Wayne Karr, second from right) at a high school "teaching" youthabout homophia (Photo by Karen Ocamb)

The role of grief in the queer psyche is the most tender of class lectures for me, more so than talking about navigating the imbedded sexism that underlies much of heterosexism, while simultaneously claiming responsibility as a community member, professor and ally to my transgender students, clients and friends, for my cisgendered privilege as a queer femme. Lectures about grief and loss leave me shaking and my breath rattling much more than when I talk about racism and cultural accountability in queer communities—even when I’m the only person of color in the room.

On the first day of class, I show a film of Tim Miller’s wonderful performance monologue “My Queer Body.” I’ve known Tim’s piece since I saw it premiere at Santa Monica’s Highways Performance Space in 1992. I love his remembrance and embodiment of his young queer self. And my students love the connection they feel to his portrayal of the anxieties and desires of queer adolescence. Sometimes they weep as they laugh in recognition. Sometimes I weep with a different recognition.

Tim moves through the audience at Highways, where the show was filmed, engaging the audience, talking with them, making physical contact, and sitting on someone’s lap. In this performance, the lap he sits on belongs to Steven Corbin.

In my psychotherapy practice, my clients often bring in photos of family and friends, wanting me to see the faces and bodies that they talk about. For many of my heterosexual and younger queer clients, that means families of origin, friends, lovers past and present. For my older queer clients, it also means ghosts of the plague. We talk about them, invite them into the room with us. Sometimes clients read entire lists to me, calling out names the way I have over the past twenty years, refusing to let anyone go. Sometimes the lists sit on the couch next to them, not opened or read, a constant presence in the room.

Queer Nation protest (Photo by Karen Ocamb)

Somewhere in a box in my garage, I have a list. It’s a box I always know where to find but haven’t opened in a few years. The box also contains photographs, cards and letters from friends who have died. Over the years, some of the photographs have found their way out of the box and into my house. A black-and-white photo of Cory and me hangs in my dining room. The photo was taken in the middle of a playful afternoon photo shoot in Elysian Park. Cory hadn’t felt quite right for a few weeks—sleepless, fatigued, achy. I had spent nights sitting up with him. His T-cell count had dropped. So had the T-cell counts of a few of our other friends from ACT UP and Queer Nation. They began joking about pooling their resources, the good socialist activists they were trying to be, and sharing their T-cells. Loaning them out to whoever was in greatest need on any given day, the story went. During the photo shoot, we had laughed and played, darting around trees and through open fields.

“You’re feeling better,” I said, when we paused to catch our breath. I passed him a bottle of water.

He drank, then passed back the bottle. “I borrowed a few T-cells,” he said.

I bent to put down the bottle, took a deep breath and kept my head tilted and eyes closed so he wouldn’t see my tears. Cory moved behind me and wrapped his arms around me. He looked into the distance over my head, my hair blowing and catching in the stubble of his two day beard and shaved head. That’s the moment the photographer caught.

I don’t know how to explain this to my students. That our community is a space defined by absence. How do we bridge that experience? Sometimes I think that maybe it isn’t dissimilar to my experience as a young queer radical in the early years of AIDS, when my queer elders told me their stories of “remember when”—when it wasn’t safe to be out or visible anywhere, decades before queer street patrols were formed, when queers bash back was a public oxymoron and singular fantasy, and when Glee and The L Word were unimaginable. And yet enough of them survived to school me, to tell their stories.

Who tells the stories of our dead? Of course we do, but I don’t mean our stories of remembrance, which now are filtered through a future that was unimaginable twenty years ago and remained unattainable to our dead. Steven Corbin was working on a fourth novel when de died. What was it? What would his fifth have said? His sixth? What would James Carroll Pickett’s next play have been? What music are we missing from Michael Callen?

Recently I was asked to sit on a thesis committee about queer art and activism. I wrote a similar thesis fifteen years ago, writing about James Carroll Pickett’s last play, and Sarah Schulman’s novel People in Trouble, which fictionalizes ACT UP. Her novel was published in 1990. In the novel, one character defiantly says from his hospital bed “Not everyone dies. Michael Callen is still alive.” Michael Callen died in 1993. The last time I saw him was at Highways. I was with Steven, who died a few years later.

What is captured in Schulman’s novel, what was captured in our dailiness, was the urgency of justice as our only hope for survival. The idea that “it gets better” would have been infuriating in its passive construction. There wasn’t a guarantee of later. We needed to make it better now, or there wouldn’t be a later. That was the central force of ACT UP, and we were surprisingly successful in demanding drug trials, access to drug treatment, hospice programs and safe sex education. But now, for those of us who have stumbled into the unimaginable future? How does our fight still live and translate?

In class with my students, and with my old ACT UP and Queer Nation friends outside my classroom, we struggle to make sense of how the fight looks now. What about marriage? What about parenting? Some issues are clear—hospital visitation rights and freewill would have allowed dying friends to control their last days instead of the biological families of origin who came to control decisions at the end of lives they had abandoned who had fled from them.

For me, this too is where marriage fits in—transnational couples and queer couples with hostile biological families, fighting to take care of each other, to be recognized as family with primacy and claim, and self-determination.

Some of my younger queer students still look at me like I’m from another planet when I tell these stories. A few years ago, a student told me that he didn’t think it was possible to live through so much loss, that he wouldn’t want to if given a choice. I want to bridge this with my students, and don’t know any other way than to tell them. And so we sit together and watch Tim sit on Steven’s lap, and I tell them who Steven was. And I wonder out loud who he would have been now.

Those of us still here still fight for one another’s lives. But it looks different now. There have been cancers, serious illnesses, surgeries, and the deaths of parents and spouses. We help one another now in the ways we learned then. And, there is still AIDS. We aren’t post-AIDS. The success of the protease inhibitors bought more time for some and the illusion of more time for all of us. But we know that until there is a functional health care system with true access to medication and treatment—and agency about treatment choices for all—we are not post-anything.

Cory and Keiko (Photo by Sonia Slutsky)

That photo of Cory and me hangs in my dining room, and I walk past it every time I walk through my house. Sometimes it leaves me doubled over with grief, with memory and longing. I wouldn’t have it any other way. To my students who say they don’t know if they could tolerate so much loss, I say I would do it all again. There was no other choice. And still. I want them back. I would do anything for that.

AIDS at 30: ACT UP Demonstrates at the Federal Building in Los Angeles

Karen Ocamb — Tue, 21 Jun 2011 20:10:00 GMT

One of the largest of the early ACT UP demonstrations in Southern California brought in over 400 people from all walks of life in October 1989 to demand that the federal government grant people with HIV/AIDS access to experimental drugs in the glacial FDA pipeline. Here’s the fairly comprehensive LA Times story about the protest during, which 80 people were arrested. Here’s an excerpt:

“I’m about to get arrested, and I’m a little afraid,” said psychologist Martin McCombs as officers dragged away a man squatting next to him. “But I’m willing to get arrested because I’m more afraid of doing nothing.”

Just before he was arrested, [Metropolitan Community Church founder Rev. Troy] Perry said much of the apathy that exists about AIDS springs from such misconceptions as “only homosexuals contract the disease and it’s a punishment from God.”

“I don’t believe in a theology of disease,” said Perry. “This is no more God’s punishment of homosexuals than sickle cell is punishment for black people.”

And in the end, demonstrators conceded that they had little impact on the employees.

“I’m telling people I’m dying,” said Brian. “And I’m asking them to help me and I feel like I’m talking to people who were never alive in the first place.”

Federal Protective Services chief Mike Anderson told The Times that Perry suffered minor shoulder injuries during his arrest. Troy—one of the true heroes of the AIDS crisis for comforting so many as they lay dying—told me that the injury was so severe, he still feels pain at times all these years later. We captured that arrest in this report which my friend Tad Feldman and I shot and produced for West Hollywood City Channel News.

AIDS at 30: Project Inform Director Martin Delany Talks About Compound Q

Karen Ocamb — Tue, 21 Jun 2011 20:32:00 GMT

Project Inform Director Martin Delaney’s appearance in West Hollywood to discuss experimental AIDS medications drew praise and concern that the drugs wouldn’t be available in time to help those who most needed them.

AIDS at 30: California AIDS Ride 1996

Karen Ocamb — Tue, 21 Jun 2011 20:27:00 GMT

AIDS at 30: Rob Eichberg Talks About National Coming Out Day

Karen Ocamb — Tue, 21 Jun 2011 20:23:00 GMT

Rob Eichberg was a noted psychologist and LGBT activist who created “The Experience” to help LGBT people with the coming out process. He died of AIDS in 1995, just before the life-saving HIV/AIDS medications became available. He and LGBT and Democratic activist Jean O’Leary created National Coming Out Day in 1988. O’Leary died in 2005 of cancer. This is a video I helped produce – sad now for how many people in the piece are now gone.

AIDS at 30: The AIDS Memorial Quilt on Display in Washington, D.C., 2000

Karen Ocamb — Tue, 21 Jun 2011 20:34:00 GMT

My friend Renee Sotile covered the unfolding of the Names Project AIDS Memorial Quilt in Washington DC as part of the March on Washington in 2000. She and her wife Mary Jo Godges of TraipsingThruFilms.com have edited that footage to commemorate the 30th anniversary of the first CDC report on AIDS set to a song they wrote called “Higher Power,” performed by Edna Wright.

On Sunday, June 5, over 3,000 participants in AIDS LifeCycle 10 will leave San Fransisco to ride 545 miles over 7 days—no doubt some of that challenging distance in the rain—to raise money and awareness to try to end AIDS. Many of them are riding in the memory of someone they lost to HIV/AIDS. Many of them are Positive Pedalers—living with the disease, not dying from it. And about half of the participants are straight. Each person has a story—as does each person whose name is memorialized on the Quilt and those who shed tears for them. 30 years of AIDS is too long.

AIDS at 30: ACT UP/LA’s Mark Kostopoulous—Unforgettable!

Peter Cashman — Tue, 21 Jun 2011 20:05:00 GMT

ACT UP's Mark Kostopoulous talks with Connie Norman (Photo by Karen Ocamb)

“What the hell is this West Hollywood pretty boy doing here!”

That was my personal thought as I watched a curly-haired, slightly mustachioed, levi’d hard bodied fox work the room passing out fliers.

The room was one of the largest halls at that city’s Plummer Park. The event was a November post-1987 March on Washington community meeting which was packed to overflowing with both hard core activists and inspired community members.

The fox, I would discover very shortly after, was Mark Kostopoulos who had just turned 33. Four and half years later he would be dead.

What he accomplished in that time is simply remarkable.

The flier announced a public meeting the first week of December to form a Los Angeles chapter of ACT UP.

Could he have imagined that hundreds would turn out on a dark and stormy night to found ACT UP/LA. That in time his counsel would be sort by lawmakers, academics and people of faith. I doubt it very much.

Nor could he have imagined being honored by the California’s largest health advocacy organization (Health Access) at a San Marino garden party.

After all Mark’s politics had been forged in the deepest of red and would later be shaded in pink as a leading light of Lavender Left.

ACT UP had no leaders said the mantra, but if ever there was a natural born leader is was Mark. The public meetings of ACT UP/LA were governed by consensus votes. Meetings and votes that were magnificently guided, and dare I say manipulated, by his sheer will, vision, skill and intellect.

Mark soon recognized that folks coming to ACT UP’s weekly meetings were politically diverse ranging from ‘his’ left to liberal moderates to disaffected Reagan Republicans and libertarians. Mark adapted to these realities, and he went about educating, coercing and strategizing like no one I had ever seen. And I had seen plenty having had a politician father and working in the media all my life.

Political correctness, always a great laugh in those days, was given short shrift.

However It was impossible to be in Mark’s company without being aware of the broader progressive issues and sensitivities that informed ACT UP/LA’s AIDS activism.

ACT UP/LA protests President HW Bush in Century City in late 1980s (Photo Karen Ocamb)

Mark was a mail carrier by day and all his free time went to ACT UP. Well, almost all. Somehow he found time to date—he could hardly avoid it in a predominately gay male ACT UP. A relentless force shepherding Sunday ACT UP coordinating meetings’ at his Echo Park home. Meetings, that like the general meetings, could be interminable. However consensus would be arrived at, minutiae prioritized and action plans developed and executed.

Fear and being surrounded by the dead and dying has a way of concentrating folks determination to act to get something very concrete accomplished.

Talk was critical but ACT UP was committed to action, specifically non-violent direct action, to fight the ‘business as usual’ policies that hobbled the war on AIDS. Mark repeatedly reminded us that this was what ACT UP did, that no-one else would or could do. He initially resisted efforts at the more genteel forms of political engagement, letter writing and lobbying. Later ACT UP would be famously effective in embracing these means to further pursue the issues it had angrily and often humorously voiced “on the streets.”

Mark Kostopoulous leads at news conference (Bad Photo by Karen Ocamb)

Whether it was demanding a long overdue dedicated AIDS inpatient ward and eliminating ing the terrible conditions at the 5P21 outpatient ward at County /USC Hospital. Or fighting discrimination against PWAs or getting more rapid access to promising drugs and treatments. Mark was brilliant at keeping people focused.

ACT UP got people’s attention rapidly. but despite progress after ACT UP’s week-long vigil at the hospital, civil disobedience at County Board meetings, newspaper op-eds etc. he did not hesitate to tell the L.A. Times at the end of 1989 outpatient care at County-USC remains “a scandal”.

Being Alive’s, Sean Kinney wrote in 1997, “For those who receive their care at 5P21 (the L.A. county AIDS clinic), not one single day should pass that you do not publicly speak the name Mark Kostopoulos in pride. You benefit from his courageous fights.”

ACT UP protest at the federal building in the lat 1980s (I think the photographer is Chuck Stallard)

Berating the Catholic Church locally in late 1989 for its refusal to embrace condoms in the fight against AIDS he responded to then-Archbishop Mahoney in the L.A. Times. “We don’t need compassion when we are sick and dying. What we need is help in staying alive.”

Being around Mark was not always serious. He would sometimes bicker with Gunther Freehill quietly and not so quietly during meetings. That they developed a partnership in activism and love that would endure until the end was a tribute to them both.

Nonetheless Mark’s life was increasingly beset by his own health problems. Initially diagnosed with what was then known as ARC (AIDS Related Complex) in the late 80s his incredible workload no doubt hastened an advance to a bevy of AIDS opportunistic infections by the time he died in mid 1992.

In January that year, Critical Path AIDS Project in Philadelphia reported a war weary Mark had been asked about whether his activism with ACT UP had prolonged his life. “I don’t know if that’s true, in fact some say that AIDS activism is killing me. I think the reality is that it doesn’t matter. The point is the quality of my life. Certainly the activism I’ve engaged in has made for an amazing four years. I would not trade them away for anything. That’s the point.”

He told me once that his time with ACT UP marked the first time in his life he did not feel marginalized.

ACT UP/LA protest Hollywood homophobia and AIDS-phobia at the Academy Awards (Photo by Karen Ocamb)

My final memory of that audacious flier fox of the fall of 1987 was visiting him very briefly a few days before his death on June 20, 1992. Ferd Eggan captured it shortly after, when he wrote, “It was not an easy death. He survived five bouts of PCP, but his body could not cope with disseminated KS, fungus in his lungs, MAC, CMV and other infections, all at the same time”.

Mark Kostopoulus was a helluva trouble maker. An over-achiever. He changed our lives. Those of us with HIV/AIDS that survive him, those who have succumbed to HIV since, benefit from all that he achieved. We are forever in his debt.

Demonstration following the death of ACT UP/LA founder Mark Kostopoulous (Photo by Karen Ocamb)

Peter Cahsman (r) during the protest march commemorating Mark Kostopoulous' death (Photo by Karen ocamb)

AIDS at 30: Noel Alumit on James Sakakura

Karen Ocamb — Tue, 21 Jun 2011 19:56:00 GMT

James Sakakura (Photo by Noel Alumit)

A Room Named James

By Noel Alumit

My standard of beauty at the time was some white guy. Seeing James, a well-built Asian man with a bald head and full lips made my head spin. He challenged my concept of beauty.

He was a waiter when I met him, and we became fast friends. Everyone who met him was immediately taken with his gentleness and warmth. He started volunteering for the Asian Pacific AIDS Intervention Team, a place where I’d worked since 1993. James was eventually hired as a Community Health Outreach Worker.

In the 1990’s (and even today), it was hard finding HIV positive Asians to speak to an Asian audience about their condition. When I asked him if he’d do a radio show geared toward Asian Americans, talking about having AIDS, he readily agreed. I don’t know how many people he’d touched that day. Afterward, the host and sound engineer were obviously touched by his story, particularly when James spoke of his father, a stern Japanese American man, thought it was natural that his gay son would get infected with HIV.

It took courage for him to live openly about his status in a community not used to talking about sex or disease or condoms. When he died, I thought it was unfair … and I still do. He was 36 when he transitioned. I was 27. Now, I’m 43.

Sometimes, on a slow day, I’ll sit in the James Sakakura Family room, named after our first staff person to have died from AIDS, and just remember him. Just sit there and think of him.

In 1993, I was only the fourth person ever hired. There was only five of us. We’re an agency of 30 people now, and we’re preparing to open our own clinic. In the plans for our new building, I asked where the new James Sakakura Family Room will be placed. In the blue prints, I was shown which room would grace his name. It’s larger than the room we have now.

We’ve had a complete turn over in staff since James died. All of the people I currently work with at APAIT have never met James Sakakura. He was my friend, I tell them, I recruited him to work here. Then we go back to work and never mention it again.

What they don’t know –and it’s not pertinent to their work, so I don’t tell them—is that I loved James so very, very much. I loved him like he was a piece of me. And when he died, a little piece of me died, too. When I saw him in his coffin, I wanted to go screaming from the room. There are still moments in a staff meeting where I’ll look at his picture and feel an incredible sadness. Then the staff meeting ends…and I go back to work again.