The LGBT movement shifts its focus beyond marriage
Vinny Allegrini shuffles slowly into the diner down the block from his West Village apartment, his gaunt legs shaking as he sits down cautiously. Vinny is followed closely by his husband of almost 20 years, Mark de Solla Price, who keeps a close eye on his partner. The wait staff smile. They know Mark and Vinny well. “Back again?” says their waitress. “Vinny was just here early this morning.”
Both Mark and Vinny have been living with HIV and AIDS for the past two decades. They share an omelet for breakfast, and order identical iced coffees. When Vinny’s unsteady hand causes some egg to spill onto his t-shirt, Mark immediately wipes it off.
After their first date at Rafaela’s Café in 1993, they knew they had to get serious fast, because of their medical conditions. A year later, Mark had proposed marriage at Rafaela’s, and over the years the two have gotten married three times: once to a rabbi who lost his congregation for marrying a gay couple, once to a Catholic priest, who was kicked out of the church for performing the ceremony, and once in 2000 when Vinny got sick. Shortly after he was diagnosed with AIDS, Vinny had to quit his job as a hair stylist. He was told that his death was imminent, and Mark placed his partner in home hospice that same year.
“We had a visitor one day and she came in with a bad haircut,” said Mark.
“You see, I worked under Vidal Sassoon for two years,” interjected Vinny.
“So Vinny tried to stand up, and a hospice nurse had to help him, and he did this spectacular haircut for her. The rest of the day he was glowing. Before that, he was this pale guy about to die and then he did his art.”
“I never thought I was dying,” said Vinny with a boyish grin. “I knew I was going to beat it.”
For four and a half years, Vinny was told he was going to die any day. To this day, both Mark and Vinny’s list of daily and weekly medications fills an entire sheet of printed paper. But they are still alive and fighting, and they join a steadily growing number of aging gay men with AIDS known as HIV veterans.
These are the issues, says Janet Weinberg, chief operating officer of Gay Men’s Health Crisis, that have been swept under the rug in recent years, as the fight for marriage equality has absorbed much of the media’s and public’s attention. But since the Defense of Marriage Act, or DOMA, was overturned in June, New York LGBT activist organizations like Queerocracy and Gay Men’s Health Crisis feel that it is time to focus on some of the unanswered questions and issues of the LGBT community: How do we treat a new generation of elderly AIDS survivors? And how do we curb the spread of HIV among the largest demographic of new contractors – young black men?
“Unfortunately everything old is new again,” said Weinberg. “We sit here and watch the epidemic numbers for HIV amongst young black gay men and it’s a very underserved and under-discussed population. We have an aging LGBT population for the first time since our movement began at Stonewall who are now having aging issues like diabetes and cardiovascular problems, coupled with HIV.”
For Mark and Vinny, everyday living will become much more difficult once Vinny turns 65 in a couple of weeks. When that happens, he will no longer be eligible for the private disability income that he began receiving when he officially retired as a hair dresser. Mark and Vinny will have to scrape together a living for two years until he can file for social security at age 67.
“There’s nothing anyone can do for us,” said Mark, shaking his head.
“Tell them to call my office,” said Senator Brad Hoylman, an openly gay Senator who lives with his husband and their two-year-old daughter. “I’m going to be fighting for increased funding for NYS AIDS institute to help our seniors with AIDS, as well as the young homeless kids with AIDS.”
But New York State just may be the best place for all members of the LGBT community to receive proper healthcare. Doctor Barbara Warren is the director of LGBT services at Beth-Israel Medical Center, the only program of its kind in the country. Beth Israel, according to Doctor Warren, is a leader in all modes of criteria- from sensitivity to non-discrimination policies and educating staff members about how to treat people of different sexual orientations.
This is still a very different scene from 20 years ago, when Mark had to fight to be acknowledged as Vinny’s partner and next of kin – not just a casual acquaintance.
“I could not have imagined 25 years ago we would be where we are today,” said Dr. Warren. “But there’s still a lot to be done. We know there is a lack of access to LGBT preventative healthcare in New York City. There are a couple of these centers around the city that have done amazing work, but they’re small and overwhelmed.”
For Perry Halkitis, an NYU professor, Chelsea resident and published psychologist who has written multiple books on gay men and living with HIV, finding an LGBT-specific healthcare clinic has always been an important, though difficult, task.
“I was born and bred in New York City so I haven’t experienced discrimination, but I prefer talking to an LGBT provider because you feel more comfortable talking about sexual habits and experiences,” said Halkitis. Like Mark and Vinny, Halkitis has been surviving the HIV/AIDS epidemic for a long time. He has had HIV – but not full-blown AIDS – for 30 years. He said that although he has been successful in his career, and has stayed relatively healthy, he constantly worries about the future. At age 50, Halkitis looks at the long lineup of pills he has to take every day and wonders how he is going to afford this in years to come.
“For me what it feels like is that you’re in awe that you’ve survived this war, but you’re afraid the war is hiding and ready to re-emerge,” said Halkitis. “There are people my age who think that all this attention on DOMA detracts from other issues. They feel that we’ve forgotten about HIV. I think there’s still an HIV problem but our health options are constantly improving.”
For Halkitis, Vinny and Mark, luck, survival and access to modern medication has not prevented them from watching their friends pass away, one by one. “No one I knew who had AIDS made it through the 90s,” said Vinny. And as survivors, they are left with battle scars: at one point Mark contracted Hepatitis-C, but was able to beat it, and was left with back and leg problems, along with diabetes. Mark explained that with HIV, his body has aged two or three years for every year he has lived with the disease. And of course, Vinny’s body has been significantly weakened by his brush with death.
Between the costs of their medication and doctor’s visits, and the steadily climbing rents in their neighborhood, Mark predicts that they within the decade will not be able to live in the West Village anymore.
For now though, hobbled with disease, the two live on West 4th Street right near the 1 stop, where they have resided for years. You can barely move in their tiny, narrow apartment, which doubles as a living space and storage from when they sold their old office. They look at each other silently, as Mark helps Vinny into a chair. They kiss. It is a private moment – that of two men who have memorized each other’s every tick, personality flaw and pharmacy prescription. Like thousands of men and women in the LGBT community, they struggle. But they fight like New Yorkers.
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