Casey House // Aurora Stewart de Peña
Aurora Stewart de Peña reflects on the role Casey House has played in community building for people with HIV and AIDS.
Derek Yee danced across the floor, light as a water-bug. He narrated the steps.
“You take three steps forward, you bend down, you turn around, that’s time to pause, time to reflect.”
He was still for a moment, then he rolled his shoulders down and back; perfect dancer’s posture. We were in the Quiet Room at Casey House,Canada’s first hospital dedicated to people with HIV and AIDS. I remember the receptionist watching us through the glass, smiling.
In 2017, I was the strategist on a campaign that launched Casey House’s new facility. For the launch, we created a pop-up restaurant staffed entirely by HIV positive chefs. We called it June’s. It was named after June Callwood, the founder of Casey House. When Callwood opened Casey House in 1987, their first patient was delivered by a team of medics in hazmat suits. The people who lived through that time, and who are living today, still face a lot of fear, stigma, and misunderstanding. A recent study by the Prevention AccessCampaign found that over a quarter of millennials avoid hugging people who are HIV positive.
The dance Yee was doing was called Hard On:the HIV/AIDS Resiliency Dance. It was Yee’s own choreography. He’d been writing a proposal so he could get funding to make a professionally-produced video. Yee has lived with HIV for 25 years, so he knows how important it is to move everyday. He wanted to help other people with HIV to dance. Dancing was the way Yee, who left home as a teenager, found his community.
“WhenI came out in the ’80s, I ran away to a discotheque—dancing to'Super Freak' all night long. We used to have these big parties and the whole club gets dancing.” In the ’80s, the Toronto clubs Yee loved, like the Barn and the Twilight Zone, were safe places. They were hubs of celebration and defiance. When AIDS hit, those clubs brought people isolated by stigma, sickness, and grief together. Yee feels the need for this shared experience and care, still: “For people like myself, who are on disability, you need to go out. You need to feel like you’re part of the community.”
Yee is part of Casey House’s Day Health program. It’s a new kind of program for people with HIV, one that recognizes the people in it are going to live.
TheDay Health program offers nutritionally balanced meals and showers.It provides access to nurses, physiotherapists, social workers, and a community of people facing similar challenges. It also offers lockers, which clients use to store their medication—lockers come in useful if somebody doesn’t have secure housing, which many people managing HIV in Toronto do not.
Yee speculated that he’d been HIV positive since 1988, though he wasn’t officially diagnosed until 1993. “I had full-blown Kaposi’s sarcoma,” he told me. He’d just begun to seek treatment, only to be told he’d be dead in three months. He wasn’t.
1993, the year of Yee’s diagnosis, was also the year Tom Hanks starred in Philadelphia. Hanks played Andrew Beckett, a bright young lawyer fired from his firm after the senior partners discover he’s both gay and has AIDS.He won an Oscar for his portrayal. Philadelphia set the template for the still dominant narrative about AIDS in popular culture. A handsome, gifted, tragic, beautiful gay man(generally played by a beautiful straight man), is diagnosed withAIDS and therefore, an inevitable death. But the HIV narrative has changed.
Today, it’s actually more common to have HIV than it was in the ’90s.Part of that is because new people are being infected— diagnoses are up 17% since 2014—but it’s also because increasingly, people diagnosed with HIV are surviving.
In1996, a combination of antiretroviral drugs known by their acronymHAART (Highly Active Antiretroviral Therapy) drastically improved and extended HIV-positive lives. Today, a person living with HIV can expect to live up to 70 years, if they take care of themselves by managing stress, exercising, taking care of their diet, and being vigilant with their medication.
But for a lot of older, low-or-no-income people living with HIV—who might also be dealing with external stressors like homelessness—exercise, a nutritious diet, and staying on top of medication gets very difficult. Particularly for people who must choose between paying for things like housing or paying for their prescriptions. These are some of the people the programs at Casey House are designed to help.
Leroy Preston has been living with HIV since 2003. He’s 51 years old with a slow, warm smile. Like Derek Yee, he’s also part of the DayHealth program at Casey House. In the early 2000s, Preston moved toCanada from Barbados, leaving behind a baby daughter. When we met, his daughter was about to graduate high school; and she wanted to come to Toronto and study musical theatre. The two talked on the phone every morning.
Preston told me that everything he does is motivated by the goal of bringing his daughter to Toronto. When we met, Preston had his wheelchair with him. He didn’t sit down and roll, though. He pushed it like a grocery cart. He said it helped him stay in shape. “I push my wheelchair all over Toronto. I don't want a scooter, it’s a liability. They break down on you, you have to charge them at night, and if the rain falls … ”
Moving every day is also a big part of Preston’s survival regimen, just a sit is for Yee and many other people with HIV. And, like many of the older generation living with HIV, he’s been his own advocate. In the early days of his illness, Preston was misdiagnosed. Though he was on medication, a treatment that involved multiple pills a day, they were the wrong kind. “I’d get off the toilet bowl, my legs would tremble. I’d go in my shower, I would tremble like I was falling. Lay on my bed, get off the bed and tremble.” Finding a doctor who would listen and work with him changed his life, but it took persistence at a time when he didn’t have a lot of resources.“When I was weak, I felt like I was nothing. The time I got strong enough to bathe, and to sweep my floor without my cane, I felt like I could contribute. Now, I can do things.”
Being able to advocate for yourself is critical, and it’s easier if you’re part of a community. In 1993, the majority of the work done by activist organizations like ACT UP in New York or AIDS Action Now! in Toronto was about demanding action from a medical establishment that was directing thousands of infected people afraid to die toward hospice care.
Now that outcomes are better, organizations like Casey House, the People with AIDS Foundation, and The Committee for Accessible AIDS Treatment focus on building their clients’ capacity so they can get what they need. That capacity-building work begins by understanding the toll dealing with a lifetime of homophobia, racism, homelessness, and poverty can take.
Derek Yee immigrated to Canada with his family from Trinidad in 1970. A new Canadian, he faced a lot of racism and remembers the pain of the slurs white classmates would use to describe him. As he began to grow into his sexuality, home wasn’t a comfortable place, either. His traditional West Indian family didn’t talk about sex, so when puberty hit, he sought advice from, as he called it, 'The Canadian Side of Things.' “They said ‘homosexuality is okay. Go home and tell your parents you’re gay and you’re proud.” He went home and told his parents he was gay and he was proud, but it didn’t go as he’d hoped. He ran away from home a few weeks later. “I was proud, I was stubborn. My eyes were crying, but I packed a Le Chateau bag and disappeared on the streetcar.” He didn’t speak to his family for the next 30 years.
Throughout high school, Yee slept on the street or in bath houses, and was a sex worker. He looks back on some experiences that were important, and a lot of them were scary. He remembers being in sexual situations with adults, feeling afraid, and not having control. What happened caused a lot of damage, but it’s also helped him understand how to help people who have lived lives like his. “I was touched over a thousand times before I became an adult. Me too,” he says, reflecting on the hashtag. “Me, too much. But with the support I’ve had, I’m healing. These days I have a choice. It’s my choice todo what I want to do. I didn’t know that, before. So now, I advocate for children. What happened to me as a child should not happen to anybody as a child.”
Like Yee, Preston remembers the heavy stigma surrounding gay people inBarbados, when he was a boy. He did everything he could to stay away from kids he worried could “turn him gay.” Instead, he threw himself into school, diving into Walt Whitman, T.S. Elliot, and D.H.Lawrence. He became one of the top students in the country. He got married to a woman, and he became the owner of a successful car dealership.
But when he came to Canada without his wife and young daughter, the loneliness hit him hard. He began to use crack cocaine. “That's the worst thing in the world, I wouldn't wish it on my enemy. It strips you of your basic common decency and humanity.” It was during this time that Preston thinks he contracted HIV, but his brain was clouded from his drug use, and he doesn’t remember a lot.
Looking back is hard for him: “At two o'clock in the morning in my bed, I cry. Because I’ve done so many bad things to so many people, and so many people have done good to me.”
Preston goes to church a couple times a week. It’s a place for spiritual reflection, and it’s also a place where his HIV status doesn’t define him and defies those who characterize him by his illness. “Everybody’s treated the same way. There, I’motherly abled, and not so much disabled.” He’s inspired by his church’s child refugee welcome program, which he supports with volunteer work, and by donating money, when he has extra. “So many people are doing so many good things for other people, including myself. So why can't I do something good for somebody?”
“We’re here.” Yee says. “We’re growing older and we’re getting back into the community and we’re contributing.” Yee is teaching capacity-building workshops with the Committee for Accessible AIDS treatment in Regent Park. There are a lot of people who have had life experiences like Yee’s, and they can learn how to live and thrive, just like he has. “You have to know how to take care of yourself.When you get better, what do you want to do?”
I asked Yee what he wanted to do. “I’ve never seen the world. I need to see and experience the world.” Yee paused for a second, straightening up, “and I think the world needs to see and experience somebody like me.”
Aurora Stewart de Peña writes plays and other things. She’s had her work produced in Brooklyn, Manhattan, New York State, Bath, West Yorkshire and here in Toronto at the SummerWorks, HATCH, Rhubarb, and Fringe festivals as well as independently at Double Double Land, Videofag, and The Theatre Centre. Her short stories have been published in The Puritan, Little Brother, and Petal Journal. She has contributed to Canadian Art Magazine and Definitely Not The Opera.