Joe Aliaga died on Christmas.
An 82-year-old former therapist, he was hospitalized for nearly a year following a number of falls that made it impossible to live on his own. He broke his shoulder and lost most of his teeth after stumbling in the street and hitting the pavement. On an earlier occasion, the fire department had to smash through his window after he fell in his apartment, crying out to his neighbors for help through the locked door.
His friends brought ice cream and ginger ale to the Upper West Side nursing home where he shared a small room with John, a 90-year-old suffering from severe dementia who often screamed in his sleep.
Joseph Small, who had known Aliaga for 15 years, says that his longtime friend was no longer the independent, caring man he once knew. Joe was angry and despondent about the rapid deterioration of his body, but even more than that, he was terrified that the nurses in his home would learn he was HIV-positive.
“He became very paranoid and suspicious of everything,” Small said. “How would anybody feel if they walked out of their apartment one day, fell down in the street, and never went back?”
Aliaga was diagnosed with HIV at the height of the AIDS epidemic in the mid-1980s, a time of widespread fear and panic about the disease. Small remembers that during that time, it was common to not hear from a friend for a couple weeks and then read their obituary in the paper. Fearful of being subjected to the discrimination that so many had faced three decades earlier, Joe became closeted in the last years of his life.
After cleaning out his friend’s apartment, Small discovered “hundreds upon hundreds” of empty prescription bottles for his HIV medication. He was afraid of someone discovering them.
But a recent decision from the Trump administration will further push LGBTQ elders like Aliaga back into the closet. Questions about queer and transgender seniors have been deleted from the National Survey of Older Americans Act Participants, an annual survey conducted by the Department of Health and Human Services. It polls older adults who rely on service providers and nursing homes about their experiences. Many LGBTQ seniors worry about being discriminated against by caregivers in assisted living facilities, which often compels them to stay silent about their identity.
The White House has also removed LGBTQ elders from its Annual Program Performance Report for Centers for Independent Living, which gauges the effectiveness of support systems for people with disabilities.
Removing LGBTQ older adults from these surveys ignores the extreme isolation faced by this extraordinarily vulnerable population. The lack of support networks among queer and trans elders often leads to more rapid health declines than others their age, including a shorter lifespan. An estimated one in four LGBTQ seniors are single and many don’t have children, meaning that they have few people around to care for them as they grow older. This a population that often faces profound loneliness in the twilight years of their lives.
The Trump decision isn’t just an affront to the dignity of those who deserve greater attention and care, not less. It erases the lives of a generation that helped pave the way for the rest of us.
People often say that Shelly Weiss was the first lesbian in Park Slope, but she believes that the “rumor has been greatly exaggerated.” Weiss, now 70, moved to the Brooklyn neighborhood 47 years ago, when Park Slope wasn’t the nexus of brunch restaurants and strollers it is today. In the 1970s, the neighborhood was filled with Puerto Rican, Irish, and Italian working-class families, as well as artists and intellectuals who sought out Park Slope’s radical atmosphere.
“Park Slope was this place where you could be a political person,” Weiss recalls.
Weiss, a frequent volunteer at the Park Slope Co-Op, was open with friends and strangers about her orientation at a time when many LGBTQ people were still inching out of the closet. The Stonewall riots took place just a year before Weiss, who grew up in Brownsville, relocated to the neighborhood. For instance, Weiss would casually drop that she and her lover went to the movies last night during conversation. That made her one of the only openly queer people that most people in her life knew, which is how she gained her reputation as a trailblazer.
“I would be so open, natural, and at ease with it,” Weiss said. “I was the lesbian in every straight woman’s life, a lesbian that they felt comfortable with.”
Park Slope has changed a great deal since the 1970s, and so have the rents. Today it’s one of Brooklyn’s most expensive enclaves, where a one-bedroom apartment will cost you around $2,500 a month. Even a studio is over $2,000. Weiss was forced to move from the neighborhood she has called home for more than three decades after her landlord raised her rent twice — first by $300 and then by an additional $200. As a single person, paying that amount of money each month is unsustainable.
Weiss said that she knew the “gig was up.”
“I can’t tell you how crushing it is to be displaced,” she continued. “It’s the place that has shaped my identity, that has given me a sense of safety, and is the breadth of my adult experience. It’s severing my connection to the only neighborhood that has been so welcoming of me as a lesbian, queer person, and lesbo mom. It’s very frightening.”
Unable to pay for rising rents, many LGBTQ older adults find themselves gentrified out of their neighborhoods and forced into assisted-living communities. Even those options, which are designed for seniors on fixed incomes, can be unsustainable. Aliaga, who required extensive rehab after his accidents, was running out of money in the final weeks of his life, and his friends didn’t know how they would continue to be able to care for him. Managing the complications around his HIV was expensive, and they were unable to find alternative care in his price range.
In addition to the difficulty of finding low-income facilities, it can also be a struggle for older adults to find LGBTQ-inclusive housing where they can be assured that they won’t be discriminated against by caregivers or other residents.
Marsha Wetzel filed suit against Glen St. Andrew, a senior living facility in Niles, Ill., after she claims that staff failed to stop her from being harassed by others in the housing unit. Wetzel, who was forced out of her home after losing her partner of 30 years to colon cancer, told The New York Times that she was “pushed, shoved, and spit on” by other residents. The 69-year-old lesbian was also harassed by a man who repeatedly shouted obscenities at her, calling Wetzel a “dyke” and a “slimy homo.”
A survey from the National Resource Center on LGBTQ Aging in 2010 found that an overwhelming majority of respondents — nearly 8 out of 10 — felt that they couldn’t be open about their sexuality in senior housing due to the specter of discrimination. Ninety percent believed that staffers would mistreat them if caregivers knew about their LGBTQ status.
A 2016 survey from Gallup illustrated just how widespread this problem is. While more millennials identify as LGBTQ than ever, fewer Baby Boomers and Traditionalists — the latter referring to those born between the years of 1913 and 1945 — identified themselves as such. Since 2012, the percentage of Boomers that identify as LGBTQ has dropped from 2.7 to 2.4, and there was a .4 percentage point decrease in LGBTQ people over the age of 71.
While it might be shocking to think of LGBTQ seniors forced back into the closet, the reality is that queer people of their generation have been forced to make these kinds of hard choices all their lives just to survive.
“Our country has progressed quite rapidly on many of the principles that younger LGBTQ people hold quite dear around equality and being treated respectfully,” said Hilary Meyer, the Chief Enterprise and Innovation Officer at SAGE, which operates LGBTQ senior centers in 20 states. “That has not been the case for the majority of our older adults’ lives. A person could be hospitalized and treated for a mental illness just for being gay or bisexual, and people could be arrested for engaging in same-sex behaviors.”
Although LGBTQ-specific senior facilities have opened in cities like New York, Chicago, and Portland, these resources remain few and far between. This means that LGBTQ people often have to be their own caregivers and providers, despite limited resources.
When Michael Chanak’s mother, who is in her 90s, was placed in a nursing home, he moved back to Wadsworth, Ohio — a small suburb of Akron — to be with her. The closest LGBTQ community center is in Cleveland, nearly an hour’s drive. Chanak, who is 67, has built up a strong support network of friends and family around the country but has few other queer people in his town to talk to. He added that as he approaches his 70s, his circle continues to get smaller each year.
“The reality is that people get old, they get sick, and they die,” Chanak said. “In my generation, a big swath of us was taken out by HIV. It gets harder and harder to meet people. You lose people with death, and you’re not as physically capable to get out and do things. It’s not that I’m up on a cross, but when you get older, you don’t have the immediate connections that young people do You don’t have kids. You’re just like this stranger.”
For LGBTQ people who find themselves single in their senior years, dating can prove a particular challenge — which only increases feelings of dislocation and alienation.
“I haven’t been on a date in five years,” said Alexis Martinez, a 69-year-old trans woman living in Chicago. “I’m looked at as sexless. Once you hit 60, you’re no longer a sexual human being. I identify as a lesbian, which makes it even more difficult. Women my age are really centered on the idea that women are women and men are men. It’s a complicated thing. I go out with people socially, but I don’t get involved. It’s like I’m invisible.”
Martinez claimed that it can be particularly difficult for older LGBTQ people to find their place in the community because so much of it is centered around youth — having a body fit for a float at a Pride parade.
“We define our leaders by how glamorous they are,” she said. “If you’re an old person, your gut may be sagging, your belly is popping out a little bit, and you’ve got grey hair. I don’t dye my hair. I stopped wearing a lot of makeup. I wear it occasionally. I don’t want to play that whole young and beautiful game.”
What happens when queer seniors feel like there’s no space for them — whether it’s in their families, senior care centers, or even in their own community? Meyer claimed that “minority stress” can lead to depression, anxiety, and even higher rates of heart disease in LGBTQ older adults. They might be less likely to seek out supportive resources or engage in their communities, which can exacerbate negative health outcomes. As Chanak added, many elders “drop out” of the system entirely.
“They decide to be hermits,” he said.
If the White House sanctions discrimination against queer and trans elders by refusing to report their experiences, this decision will only compel more people to drop out — which could have grave consequences. A 2013 research study commissioned by San Francisco’s LGBT Aging Policy Task Force found that of the 616 seniors surveyed, 15 percent had “seriously considered” ending their lives within the past year. Local respondents reported "poor physical and mental health,” as well as high rates of depression.
Erasing these problems will further keep them from being addressed, and that will cost our community precious, valuable lives. When LGBTQ people lose our forebears, we not only lose friends. We lose a vital part of our history.
Although Joe Aliaga lived at a time when many queer people remained in hiding, he was extremely active in his community. Aliaga was a therapist with the Gestalt Center, providing low-cost mental health services to gays and lesbians. At his funeral in February, friends and former clients testified to the extraordinary sacrifices he made to support LGBTQ people during a time of intense need. During the height of the HIV/AIDS crisis, Joe sat with friends and even strangers in hospice to give them someone to talk to during their final weeks. He held their hands and told them stories.
Many of Aliaga’s former clients were frequent visitors at the nursing home, caring for the man who once cared for them at a time of immense need. Small went to Joe after September 11, dealing with Post Traumatic Stress Disorder from the attack.
Joe might have died partially in the closet, but like many in his generation, he lived his life busting those doors open. To honor the legacy of those who have lived and died for the rights we hold dear, each of us must do everything we can to prevent LGBTQ elders from being shut out and ignored. Too many lives depend upon it.