Dave Matthews stands by himself on the Burrard Station SkyTrain platform. He glances down the track to see if the train is coming, carefully avoiding eye contact with anyone standing nearby. Luck is with him: everyone is obeying public transit etiquette and staring at their shoes.
When the train finally arrives, Dave hurries on and looks for a vacant seat, preferably one where no one can sit next to him. Again, luck seems to be with him; he takes a single seat, breathes a sigh of relief and settles in for the long haul back home to Langley. The ride takes about an hour, so Dave decides to get some writing done to pass the time. He opens his backpack and pulls out his small electronic pocket diary.
Before he can type a word, he feels it coming.
It’s a sensation he’s felt every day since he was eight years old. The muscles in his face and neck are about to spasm. He looks up. Across from him sits a teenage girl. She seems to have noticed his discomfort because she’s staring right at him. This just makes matters worse. The last thing he needs right now is an audience. He can feel her big eyes drilling into him.
And then it hits. His muscles tense, forcing his neck to contort and his tongue and mouth to move uncontrollably. At this point, Dave knows he has to wait it out, that it will eventually pass. But every moment overflows with agony.
Matthews has dystonia. It’s a neurological disorder affecting over 300,000 people in North America. The Dystonia Medical Research Foundation says the disorder is characterized by involuntary muscle contractions which force certain parts of the body into abnormal, sometimes painful, movements or postures. It has absolutely no impact on intelligence and is not fatal.
In Dave’s case, the muscles in his neck and face, as well as his tongue and vocal chords, are affected. The constant spasms in his vocal chords make it difficult to talk. Some days are worse than others, but most of the time, communicating with other people is a chore.
“When you’re trying to talk, you have everything up here you want to say,” he says, pointing to his head, “but what comes out is not what you want to convey.”
That’s one of the reasons Dave has taken up writing. He finds he can usually express himself better this way. And it gives him an outlet to explore two things he feels passionate about: first, what it means to live with a disability, and second, what it means to be queer.
Dave “discovered” his sexuality later in life. He’d always felt strongly about the plight of gays and lesbians, but his life was so filled with doctors and treatments for his disorder that he hardly had time for anything else. But slowly, his feelings rose to the surface.
“I was sitting in the park one day,” he remembers. “This [straight] couple was walking by and I noticed myself looking at the guy’s ass.”
Dave finally came out to his TV one night in 1997 after watching a PBS documentary on homosexuality. He jokes that he would have tried to change the channel, but the same documentary seemed to be on every month.
It’s rare that most of us get a chance to see the world through the eyes of someone disabled. Being queer and disabled can give someone a unique perspective on the world. Dave knows better than just about anybody just how unique. He also knows how lonely life can be when you’re isolated from the straight world for being queer, but also isolated from the queer world for being disabled. And although he’s often felt like he was the only person in the world living in this situation, he’s not alone.
Gareth Llewellyn and Christine Waymark are both queer and both living with a chronic disability or illness. Gareth is a recently retired library assistant from New Westminster who now calls Vancouver’s West End home.
And Christine is a volunteer therapist who’s expecting her 10th grandchild any day now. Along with Dave, they attend a biweekly support group sponsored by the Gay and Lesbian Centre called Chronically Queer. It’s a place where queers living with disabilities can get together, talk about life, love, or whatever comes to mind in a welcoming and accommodating environment.
Both Christine and Gareth share many of Dave’s experiences. They, too, know the sting of being a part of two communities, but not really fitting in with either.
Gareth is a small man with a huge smile and kind eyes. His sprightly nature is perhaps surprising considering that he lives with pain on a regular basis. Gareth has psoriatic arthritis, a chronic illness that causes swelling and pain in his hands and back. For the last 19 years, Gareth has woken up every morning wondering if he’ll need help opening doors that day.
“It’s a practicality of my life,” he says during an interview in a West End coffee shop. “If I bump into it, then I deal with it. But it’s not a label I run around wearing.”
To demonstrate his point, Gareth picks up his bottle of cranberry juice and twists the lid off. That simple action, along with his big smile, is proof that he’s having a good day.
“I got the lid off today,” he says with a grin, “but I wouldn’t take a bottle of juice on a picnic if I was the only one on the picnic.”
Christine isn’t having one of her best days when she sits down to talk with Xtra West, but it isn’t one of her worst either. She’s enjoying her breakfast in a small reading room in her westside home while checking her email. Christine and her partner, Robin, are planning a trip to Banff with a lesbian cousin of Christine’s from England. But it’s not as simple as choosing a date and finding a motel. Christine lives with a number of disorders, including chronic migraines and fibromyalgia, and the end result is almost constant pain and fatigue. This makes planning a vacation difficult; she needs to make sure she won’t get too worn out.
Christine’s eyes mirror the pain and fatigue in her life, but also reveal a profoundly thoughtful person. She obviously thinks carefully before she speaks, and this often results in some profound statements.
“Those of us who live with a disability know the value of life in a way that people who are temporarily abled don’t,” she says. “Living with a disability teaches you to stop and listen to the music, smell the flowers, talk to a small child It’s made me aware of the fragility of everything.”
Although her disability has altered her perspective, so has her sexuality. Christine went through adult life first as a feminist, then also as a lesbian, and finally also as a person living with a disability. All of these have shaped her as a person, but combined, they have also brought loneliness and isolation to her life, not to mention a strain on her relationship.
“Sometimes a disability is almost too much for a relationship,” says Christine. “But standing up to the world when it was trying to tell [Robin and me] that our loving was wrong has helped us stand up to the pressures of a chronic illness.”
Queers feeling isolated from the straight world are nothing new, but queers who feel isolated from the queer world? That’s a fact of life for Christine, Gareth and Dave. Because of their disabilities, all three often feel excluded, unappreciated, or simply invisible to the mainstream queer community. One of the most apparent limiting factors is the accessibility, or lack thereof, for disabled people throughout the West End.
Christine’s condition often requires her to use a scooter for getting around. Every year, she rounds up the grandkids and heads down to the Pride Parade. But she has to arrive at least two hours early to secure a spot, and even then people stand in front of her, blocking her view as if she’s not there.
“It’s a total unawareness,” she says. “If I’m having a really exhausting day, for me to keep getting off my scooter and asking someone to move is even more exhausting.”
And it’s not just parade spectators who don’t understand, she says. It’s the organizers themselves. “Has the Pride Society ever thought of allocating a spot for people with disabilities?” she asks.
For Gareth and Dave, the problem is less the physical accessibility aspect as much as it is the social accessibility. Because his spasms can occur at any time, Dave’s life is filled with anxiety. At first glance, Dave shows no indications of his disorder. He’s a handsome man in his mid-30s with a funky sense of style. But without warning, his neck and face can contort into a painful position. This makes meeting people exceedingly difficult for him. When he walks around downtown, Dave often feels like people are looking at him.
“I feel inadequate not fitting into society’s norms,” says Dave during an interview in the Generations office at The Centre on Bute St. “Just having another man look at me or cruise me, it makes my spasms take over my whole body. I get anxious and panicked and just want to run away.”
Gareth’s arthritis has also put limits on how he meets people, especially potential partners. He, too, doesn’t feel like he fits the norms of the gay community.
“You look around and everyone walking down Davie St is in a muscle shirt,” he says. “It sort of reminds me that that’s the ideal, but it’s not my image.”
The pain he lives with puts a huge damper on Gareth’s energy levels, and that in turn can plunge him into a self-perpetuating cycle.
“When I’m interested in someone, the first question isn’t, ‘should I ask him home for the night?’ It’s ‘do I have the energy for this?'” he says.
Even if he does have the energy, Gareth then has to deal with “coming out” about his disability to people he meets, something he is more than tired of. He’s found that the moment he mentions the word disabled, people begin to put barriers up. He attributes this to the queer community’s fear of death, mortality, or illness, a phobia he thinks is a direct result of the AIDS epidemic.
“When the AIDS epidemic started, it turned the queer community upside-down,” he says. “The people who survived that are exhausted. You can understand the inclination of never again wanting to deal with aspects of illness and marginalization within the queer community. But that’s okay. That fatigue is okay.”
Christine, too, has seen the queer community’s reluctance to open its eyes and hearts to people living with disabilities. She thinks gays and lesbians have the capacity to understand other people’s struggles, but they are too caught up in their own struggles to recognize the plights of others.
“So much energy went into dealing with the AIDS crisis that other disabilities have become non-existent,” she says. “When I was really sick, I couldn’t access the queer community and it sure didn’t come to me.”
So how do disabled queers make their needs known in a community that is so afraid to deal with such universal aspects of life as getting sick or, perhaps, growing old?
That’s one of the issues the Chronically Queer group has been debating for the past two years. Although the group is still first and foremost a place where people can come together for friendship, understanding, and support, it’s also an outlet for queers like Dave, Christine and Gareth to advocate for disabled people from within the community.
Last November, the group organized a workshop and invited a number of queer community leaders, mostly business owners and people involved with community organizations. The aim was to build understanding and a way of valuing and supporting disabled queers.
But that doesn’t mean the community needs to start merely tolerating or accommodating queers with disabilities. Instead, truly valuing and supporting them requires a complete shift in attitudes.
“People need to start thinking, ‘We as a community need these people. They have gifts, not in spite of their disabilities, but because of them,'” says Christine.
And you don’t have to live the experience to be the ally, says Gareth. He thinks the community can begin to understand queers with disabilities by starting out slowly. He suggests that when able-bodied queers make a reservation at a restaurant, they should ask how accessible the restaurant is for disabled people. If it’s not accessible, they can just choose another restaurant.
To continue the education process, Chronically Queer is planning to hold another workshop this fall, but this time everyone will be invited. The group hopes this will be a way to show the community the true value of queers with disabilities. Then, in turn, the entire community can begin to work together to remove the barriers that are standing in the way of true accessibility and inclusion.
And Chronically Queer’s ambitions don’t stop there.
“After we’ve made the queer world a little more accepting,” says Gareth, with that same warm smile, “then we’re going to start on queering the disabled world.”
In the two years since Dave began attending Chronically Queer meetings, his life has seen some major changes. The majority of his adult life has been spent in isolation. There were few people he could talk to about his disability and even less he could talk to about being queer. But through his writing and coming to group meetings, Dave has begun to realize that he is an important member of the queer community.
“Hearing other people’s stories is so powerful,” he says. “And having the courage to share my story made me stronger.”
When interviewed, Dave was gearing up for his second Pride Parade. Last year, this self-described “shy” man bought himself a hard hat, a tool belt, and some rainbow ribbons and pom-poms, and danced his way down Denman St on the Centre’s float.
“Everyone tells me how far I’ve come,” he says, deep in thought. “But my goals are still for me to be more comfortable in my own skin; for me to be able to go up to a gay man, or anyone, and just start a conversation.
“To just be me.”
At The Centre.
1st and 3rd Thusday monthly.