Caring For Lesbian Icon Phyllis Lyon, With Love And Deceit
San Francisco lost one of its most influential queer elders this year. Phyllis Lyon was a lesbian activist and trailblazer. She died in April at the age of 95. Phyllis developed dementia in her final years and was able to live independently in her own home. Or so she thought. A community of lesbian, queer, and trans people supported her with kindness... and deceit.
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Dottie Lux is a nightlife performer in burlesque and drag shows around the city. But it's arguably her day job that's more interesting. She's a caregiver for queer elder and activist Phyllis Lyon. In the winter of 2019, Dottie is pulling up in front of Phyllis' house for her shift.
"She's well into her nineties," Dottie says. "She still cannot conceive of needing help, from washing her dishes to washing her butt. And to convince her that she does need help is not possible," Dottie says lovingly.
At the foot of the stairs to Phyllis's house, Dottie points to the initials "PL + DM" carved into the sidewalk. A few months ago, she convinced a construction worker to let her draw Phyllis and her partner Del Martin's initials into the wet cement. "She's famous!" Dottie told him. But she imagined the construction worker wouldn't know why.
LGBTQ Trail Blazer
Phyllis Lyon was born in Tulsa, Oklahoma in 1924. Her family moved to Sacramento when she was in high school. She studied journalism at Berkeley and covered the police beat in Fresno. When she moved to Seattle to write for a trade journal, one of her co-workers was a woman named Del Martin. Del was a lesbian and wasn't shy about it. Phyllis was fascinated. For a year they were just friends. Until one day, the story goes, Del made a half a pass, and Phyllis completed it.
In 1953, Phyllis and Del bought a small house in the Noe Valley. It had a huge window with a view of the San Francisco skyline. But they knew very few lesbian couples. So they were excited when a friend wanted help starting a group for lesbians. Daughters of Bilitis, or DOB, started as a social club. It was a place where women could dance and meet each other while staying safe. But it quickly shifted to be political. DOB was the first national lesbian organization. They distributed their newsletter, The Ladder, across the country. And Phyllis was the editor.
The Ladder published information about the gay community that you couldn't find anywhere else at the time. Homosexuality was criminalized in the 'fifties and people kept their gayness a secret. If they were found out, it could cost them their jobs or their family and friends.
In 1965, Phyllis helped found a group bringing together religious leaders with queer activists to advocate for gays and lesbians. Four years before Stonewall, they held a fundraiser costume ball. Drag queens and clergymen showed up. So did the cops. It was one of the first times that straight religious leaders saw first-hand how gay people were being targeted by the police. Phyllis and Del also helped to create a hotline to report police intimidation, harassment, and violence.
In 1972, Phyllis and Del wrote the pathbreaking book 'Lesbian/Woman', which described and affirmed the lesbian experience. "There'd been loads and loads of books about male homosexuals," Phyllis said, "and there hadn't been anything on lesbians that was worth talking about."
Even as they got older, they stayed active. Congresswoman Nancy Pelosi appointed Phyllis and Del to the White House Conference on Aging in 1995.
Phyllis and Del didn't care much about marriage, but they also felt that denying gays and lesbians the right to marry relegated them to second class citizens. When California legalized gay marriage, Phyllis and Del were invited to be the first couple married and became the face of gay marriage in San Francisco. Their wedding was officiated by Mayor Gavin Newsom. But two months after they legally married and 55 years since they got together, Del Martin passed away.
And that's when things began to change.
There are many friends and family who are part of the story that comes next. One of them is 71-year old Pan Haskins, who had been Phyllis and Del's bookkeeper for decades.
After Del died, "We were all very concerned for Phyllis." Pan and other friends organized a network to support Phyllis, who had begun struggling with everyday tasks. Pan says Phyllis had learned how to manage so that some of her friends didn't realize she was showing signs of dementia.
But by 2013, it was clear Phyllis needed help. Strangers would call when she was home alone and Phyllis would try and write them checks. Phyllis let the insurance on the house lapse. Phyllis left the stove on and nearly started a fire. And when her daughter, Kendra Mon, tried to talk to her about these things, they would argue.
"There's no sense in arguing with somebody who has memory loss," Kendra said. "It quickly became clear that we just needed to take care of things without her knowledge. I got good at lying."
Kendra and Pan met with experts on dementia at UCSF who gave them guidance on how best to care for people with memory loss. One of the things they emphasized was little lies are okay if it helps Phyllis accept help and care.
Kendra and Pan hatched a plan that would 'trick' the fiercely independent Phyllis into receiving the care she needed. They told Phyllis a young lesbian who was interested in lesbian history wanted to come over. This young lesbian was actually a caregiver Kendra and Pan had hired, named Carrie Schell. Carrie said the premise was believable. "A lot of young lesbians are really impressed by Phyllis Lyon and want to hang out with her," Carrie says.
Carrie had a social work background and was a perfect fit for the job. At first, she would come by for just a few hours a day. She pretended she was helping Phyllis archive her newspaper clippings.
"It wasn't very long before she kind of forgot where I came from and how long I'd been around," Carrie said. "So in that way, her memory loss kind of worked in the favor of her getting care."
Daughter Kendra understood that if Phyllis knew that Carrie was a paid caregiver, Phyllis would feel diminished. So they let her believe she was living independently. "By disrespecting her and lying, we're respecting her," Kendra said. "We're keeping her image of herself, the way she wants it to be."
At first, Phyllis was in charge. Carrie would come by the house and hang out if Phyllis was in the mood. Sometimes they'd have lunch at Phyllis's favorite spot in Noe Valley, the now-shuttered Savor restaurant.
But one day when she was alone, Phyllis fell and hurt herself. Kendra and Pan decided she needed 24-hour care. They had to make some new decisions. Would they be able to find and train other people like Carrie? They tried the most obvious thing first: hiring caregivers from an agency.
But this didn't work. Caregivers would show up in scrubs with a pillow and Phyllis would turn them away. "The minute somebody would say, I'm a caregiver, she would say, 'Get the hell out of my house.'" Carrie said.
Now the goal was to find the kind of people who could get in the door and pass the 'Phyllis test.' And part of passing that test meant being queer. Carrie said that hiring queer and trans people was a crucial part of caring for Phyllis because queer people share cultural references. They speak the same language. For example, one day Carrie showed up at Phyllis's after getting out of work and referred to her own outfit as her office drag. "She doesn't know what day it is. She doesn't know what happened five minutes ago, but she still knows what 'office drag' is," Carrie said.
Carrie was able to find other queer and trans caregivers through friends and referrals. She found people that revered Phyllis like a queer grandma and that loved listening to her stories about the Daughters of Bilitis. And people who didn't mind when she was a little flirty. "When I'm trying to get her to do something, I flirt back, you know?" Dottie said. Phyllis was known to be playful with caregivers, especially if you were femme-presenting like Dottie. Caregivers have said Phyllis was more attentive on the days they dressed up and looked cute for their shift. "We'd be driving in the car," said caregiver Celeste Chan. "And I'd make a comment about how hot it was and she'd be like, you're a hot kid."
Caregivers would bring Phyllis out to a park or the beach. They'd hang out in queer spaces like drag brunch where she could enjoy the attention that comes with being a 'gaymous' activist. "She loves being recognized," Celeste said. "She loves when people see her on the street and they're like, 'Oh, I know who you are. Thank you for all that you've done.'"
Best Laid Plans
In November of 2019, Phyllis' caregivers have gathered for their quarterly meeting. It happens to be Phyllis' ninety fifth birthday and some old friends have taken her out to lunch to celebrate. So the caregivers take the opportunity to have their meeting in Phyllis' living room.
At the meeting, they discuss end of life planning. Unless Phyllis is in physical pain, they are instructed not to call 911. It is to Phyllis's benefit to ease out of life, they are reminded at the meeting, rather than have it prolonged at any cost just to live longer.
The house isn't just a meeting place for the caregivers; it's actually the reason why Phyllis can get this kind of care in the first place. Five years ago, Kendra, Pan and close friends cobbled together a unique financial set up to pay for Phyllis's 24-hour care. And it all hinges on the value of Phyllis's home. Basically, wealthy friends - mostly older lesbians - donated funds that pay the caregivers. And, Kendra explains, when Phyllis passes and after the house is sold, that money will go back to the original investors. "Phyllis is so lucky, and doesn't have any clue," Kendra says. Phyllis and Del bought the house in the '50s for eleven thousand dollars. It's a small home but it's on a double lot on a hill with a view and it's now worth millions.
Kendra says, it's a gift that Phyllis can live in her own home. "She has friends who ask her about stories from her past and remind her of all the great things she's accomplished."
"In a just and equitable world, we could hold and care for every elder the way we hold and care for Phyllis," Pan says.
Carrie adds that to get this level of care, you have to be wealthy or an icon. "I would love to see a queer community that takes care of elders in the same way that people take care of her" Carrie says.
Death Of An Icon
By March 2020, less than a week before San Francisco's shelter-in-place orders, Phyllis's health was deteriorating and she had to have an eye on her at all times after a recent fall. A month later on April 9, Phyllis Lyon passed away. The thoughtfulness that went into her caregiving also went into planning for her death COVID 19 got in the way. Family and friends gathered over Zoom for a funeral. Her community of caregivers still miss her in their lives.
"Everything that Phyllis did in her life was revolutionary and without fear," Dottie said, "I think that fearlessness is her biggest legacy."
"Care doesn't have to look so clinical, it can instead look like friendship," Celeste said. "It can be a true exchange between people."
Carrie echoed this feeling. "We don't need institutions. We can do this with just each other."
Phyllis and Del were the grandmothers of the lesbian movement, Pan said. "It will be great to say we showed up and were able to do the work we did and provide her that dignity at the end of her life."
All of their lives, Phyllis and Del were trying to create community. Kendra says in their later years, they expressed disappointment and hurt that younger lesbians thought their thinking was outdated and that they were no longer relevant. But Kenda feels that the younger generation of caregivers is the continuation of the community that Del and Phyllis created, albeit a community that Phyllis might not have realized she helped create. Since Phyllis's death, the caregivers have continued her legacy and created their own club, the Granddaughters of Bilitis.