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AIDS Activism Has Always Meant Caring Across Generations

How bitterly ironic it would be if the first generation of HIV-positive seniors, a generation that, through unprecedented community effort, has managed to survive the plague, should in their last years fall victim to a system that is utterly unprepared to care for them.
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I was already 36 years old in the fall of 1987 when I joined ACT UP -- the AIDS Coalition to Unleash Power -- and began working as an AIDS activist, work that is profiled in the Oscar-nominated documentary How to Survive a Plague. By that time AIDS was ravaging my East Village neighborhood, as it was ravaging so many urban neighborhoods across the country. More and more of us were becoming ill with a wide array of rare and mostly untreatable conditions. Most of the ill died within two years of their first symptoms, and many more were infected. Yet most of the country went on as if nothing out of the ordinary was happening -- even as the members of the communities most affected by AIDS, gay men and intravenous drug users, were dying at a rate faster than any community had died in any war America ever endured.

By 1987 it was hard for a gay man (as I am) not to conclude that the dying had been left to die because their lives -- our lives -- had been discounted. My community had already built the AIDS service organizations that were caring for the ill. But securing the treatments my community needed would require a new kind of activism, one that would draw on the expertise of the affected community to forge a new way to deliver effective treatments to the infected. It would also require that activists put our bodies on the line in a series of dramatic acts of civil disobedience, those same bodies that were often ill with the very disease we were fighting to cure.

At 36 I was (I estimate) about eight years older than ACT UP's median age. Peter Staley and Mark Harrington, also featured in How to Survive a Plague, were 28, while Spencer Cox (who recently died) was only 20, and just one of the cute young college-age guys that stood in a row against the back wall at ACT UP's Monday night meetings -- on the Coordinating Committee we referred to them as "the swim team." Since AIDS activism was rigorous work, the group drew heavily on their youth and vigor. But we drew as well on the expertise of many older members who'd cut their teeth in the Gay Liberation groups that sprung up in the wake of the Stonewall Riots of 1969 and helped forge modern Gay America.

Larry Kramer, ACT UP's godfather, was a decade-and-a-half older than me. Still older was Carl Sigmon, a retired Wall Street businessman, who taught me what I know about what New York gay life was like in the years just after World War II, and with whom I was arrested because we were in the same affinity group. The affinity group was a small band of ACT UP members that chose to risk arrest together during our big street demonstrations or smaller targeted actions. It provided a system of mutual moral and physical support designed to ease the stress inherent in any arrest situation. The affinity group also provided special care for our sick (or, like Carl, infirm) members. During the years of ACT UP's greatest successes, the organization operated like a super affinity group, members caring for each other as we had cared from the beginning of the epidemic, caring when no one else would, caring across our many generations, and when we ceased to provide that mutual care, ACT UP broke up.

After a 15-year absence from AIDS activism, personal experience at performing a different kind of caregiving has brought me back to the front lines. At 92 years old, my father recently died. For the last seven years of his life he was housebound and I was his primary caregiver. For two and a half years I slept on his couch so I could provide the amount of care he needed. After a year and a half of trying, I finally succeeded in getting him Medicaid-reimbursed home care a few months before he died. But by then his health had deteriorated to the point where he needed me several hours a day, more hours as the months wore on, to do things his caregivers could not legally do.

I myself turned 61 last September. Already the front end of my generation, the baby boom, has reached retirement age. I now am pretty expert in the difficulties the infirm elderly can face under our woefully inadequate system of providing home care. Many gay men of my generation are HIV-positive. I worry about what will happen to these seniors with special needs, odd chronic ailments, long-term use of strong medicines at a time they are requiring new medicines, and often no families to help them through the maze of securing care. HIV-positive seniors from beyond the gay male community have other special needs.

For the last few months I have been part of a group that has been meeting to deal with this potential crisis. Most of the group members are representatives from AIDS activist and service organizations, coming together as we did in 1987 and for the decades since to stop a different plague. We have partnered with the organization Caring Across Generations, a campaign uniting those in need of care and those who give it, to take a big first step toward fixing the system of home care in the US: economic justice for the home caregiver. Right now the system exploits those caregivers, allowing providers to pay them for up to 12 hours of work a day, even when the job is round-the clock. For years, I dedicated my days and my nights to caring for my father. The hundreds of thousands of care workers who do the same for America's elderly and those with disabilities deserve our respect, not exploitation.

We hope other campaigns will follow. But we are united in our belief that the time is past due for AIDS groups, gay groups and the healthcare establishment to focus on making necessary changes so the current system of care can meet the special needs of HIV-positive seniors, and treat them whenever possible in their home environments. How bitterly ironic it would be if the first generation of HIV-positive seniors, a generation that, through unprecedented community effort, has managed to survive the plague, should in their last and most vulnerable years fall victim to a system that is utterly unprepared to care for them.

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