Susan Cowell, AIDS Rochester founder and LGBTQ community pioneer, dies at 71
Susan Cowell, a politically savvy leader in the Rochester LGBTQ community who spearheaded the early local response to AIDS in the 1980s, died Saturday at age 71 after a long period of illness.
Cowell was a nurse, a political advisor and a small business owner. But the advocacy work for which she is best remembered got its start on the front porch of her Harper Street home in 1983.
HIV and AIDS had surfaced in the gay community a few years before that and already represented a public health concern in Rochester, but stigma around homosexuality had prevented a full response.
Cowell, then a nurse at the University of Rochester, gathered some fellow gay and lesbian leaders at her house to discuss what should be done.
Their concern was not only medical but also social and political: How could they best organize and provide resources and support to those who needed them?
"We had the vision that this was just the beginning," she said in a 2012 oral history. "It’s not like this is going to get better overnight. So you kind of had to realize that the sooner you can start building this network, the more prepared you’re going to be."
The organization that emerged from those front porch sessions was AIDS Rochester, which later merged into what is now Trillium Health. Cowell was a crucial leader and asset for the organization, both in her role with UR and later as Monroe County's AIDS coordinator.
"Somebody needed to do it," she said. "And I happened to be in a perfect position."
Susan Cowell: Leader in the Rochester LGBTQ community
Cowell was born in Jamaica, New York, in 1952 and grew up on Long Island, where she earned a degree in psychology from SUNY New Paltz.
Already as a college student she suspected she was a lesbian, but her friends assured her it couldn't be true: after all, she had hair like Joni Mitchell.
Her true coming out did not happen until the summer after graduation when she was working as a waitress at an all-night diner.
"I was doing the night shift at the diner and this group of women came in," she said in 2012. "And it’s like: 'There there actually be could be others like me around here.' …
"And so I just somehow hooked up with one of them. And then it was obvious to me that that’s what was missing."
Cowell went on to get a degree in nursing from Pace University and came to Rochester along with her partner in 1977.
At first she was dismayed to have arrived in what she considered the middle of nowhere. While in town for an interview, though, she turned on the television and saw members of the Gay Alliance protesting over exclusion from funding. Immediately she got involved and within two years had been elected president.
One of her early successes was drawing more than 1,000 people to a downtown rally in 1978. It came in response to a planned visit by the singer and anti-gay activist Anita Bryant, but Cowell made a point of labeling it a rally for human rights, not just gay rights.
“All the radical women didn’t like that and whatever," she recalled. "But that was the whole point, is, why do we have to be the only ones advocating for our rights and freedoms? Other people could come help. God knows we’ve helped plenty of other movements.”
'Earliest and darkest days': AIDS rampages through NY gay community
Cowell did not enter the nursing profession with the intention of advancing LGBTQ rights and access to health care. It was not long, though, before her professional and personal interests began to intersect.
AIDS was first identified as a deadly concern, at least among gay men, in 1981. Cowell then was a nurse at UR's University Health Services, which was a pioneer in empowering nurses to do more than "fluff pillows and hand out Jell-O," as Cowell put it.
She quickly helped organize a screening clinic on campus and delved deeper into the research on sexually transmitted diseases. That led to the Rochester Area Task Force on Aids and, around the same time, to the front porch meetings and the formation of AIDS Rochester.
"Those were really the very earliest and darkest days," said Bill Valenti, an epidemiologist who was heavily involved as well and later co-founded Trillium Health. "There was a lot happening at the same time, and Sue Cowell was often at the center of things."
Cowell later recalled the first man in Rochester definitively diagnosed with AIDS. He had relocated from Rochester to be closer to his family but found them to be unsupportive. Non-profit organizations helped him and others the best they could, but the episode made her determined to enter the political realm as well.
"It just politicized me, even more than I had been, that we have to make the system work," she said. "We will never have the resources (without) having legitimate government support."
Entering political arena in Rochester with Democratic party
Shortly after moving to Rochester, Cowell had become involved in ground-level Democratic party politics. In 1985 Tim Mains was running for City Council and seeking to become the first openly gay elected politician in New York.
His first choice for campaign manager fell through, so he called Cowell to ask if she would do it.
"I said, 'Well, I'll give it a shot,'" she said. "It's organizing; it's making phone calls and trying to get everybody moving in the right direction."
Mains won by 11 votes, overcoming intense opposition from local conservative religious leaders.
The next year Cowell helped Susan John get elected to her first term in the state Assembly. And in 1986 she helped Louise Slaughter earn her first term in the House of Representatives — only after persuading her supervisor at UR to give her a leave of absence to do so.
"I (said), 'I’m never going to ask for maternity leave, but I’d really like to have six weeks off to go work on this campaign,'" she later recalled.
In 1988 Cowell became the AIDS coordinator for Monroe County. She was also active over the years with various LGBTQ organizations including the Gay Alliance and the Empire State PRIDE Agenda, a lobbying coalition.
"There’s just so many different (areas where) being a player in the political arena resulted in tangible benefits for the community," she said. "Then it just becomes a snowball – like, you’re screwed if you don’t support the gay community."
'Genuine love for humanity': News obituary remembering Susan Cowell
Cowell is one of several icons of the local LGBTQ community to die in the last two years. Mains, her former candidate, died in January 2022. Evelyn Bailey, a community historian and activist, died in July 2022.
Valenti said that Cowell stood out among them as a quiet connector.
"She left her fingerprints everywhere in terms of bringing people together to get the job done," he said. "What stood out about Sue Cowell was her humanity. She had a genuine love of humanity and not only felt it but did something about it."
Mark Siwiec, a real estate agent and another early LGBTQ community leader, called her "the face of the community."
"She was a pioneer; she's an icon," he said in a 2013 oral history. "We all owe her an enormous, enormous debt of gratitude."
Cowell is survived by her wife, Marta Maletze. Funeral arrangements have not been announced.
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Justin Murphy is a veteran reporter at the Democrat and Chronicle and author of "Your Children Are Very Greatly in Danger: School Segregation in Rochester, New York." Follow him on Twitter at twitter.com/CitizenMurphy or contact him at jmurphy7@gannett.com.
This article originally appeared on Rochester Democrat and Chronicle: Susan Cowell, LGBTQ organizer and anti-AIDS activist, dies at 71
