Living the queer crip life
by Heather Cassell
Everyone wants to be seen for who they are, but for disabled LGBT individuals, being truly recognized as both queer and disabled remains elusive.
"The 'temporary-abled' world has extreme difficultly dealing with disabled bodies," said John Killacky, 54, co-editor of Queer Crips: Disabled Gay Men and Their Stories and producer and director of the film Crip Shots. "I mean, people are so frightened for their own bodies when they encounter a person with disability that they just don't know what to do and it makes us invisible, absolutely."
According to the Census Bureau, there are an estimated 267,387,983 people living with one or more disabilities in the United States. It is unknown how many people with disabilities identify as queer, according to LGBT disabled activists.
Michael Perreault, 61, a gay man who was diagnosed with polio when he was a child and now has post-polio syndrome and uses a wheelchair, told the Bay Area Reporter that he was marginalized by both the LGBT and disability communities for a large part of his life.
"I didn't belong fully in either one," said Perreault. "It totally fragmented me. It's a double kind of marginalization; so I didn't feel like I belonged anywhere. The disability movement didn't include me, the gay rights movement did not include me, and to a large extent that's still the case."
Marginalized and isolated, Perreault said that he didn't find the intersection between the two communities until he was 50. He participated in Axis Dance Company, a mixed abled and disabled dance company in Oakland, run by Judy Smith, 47, a disabled lesbian. He then became involved with the now-defunct Able-Together, a networking group. Later, people joined to produce Bent: A Journal of Cripgay Voices. The online journal is published by Bob Guter, who was also the co-editor of Queer Crips with Killacky. Perreault, with Guter's encouragement, began to write.
Perreault said that "my life started to get integrated," but that he remained invisible.
"I've been invisible in the gay community all along and continue to be so," said Perreault. "I can go down into the Castro and be totally invisible. People get out of my way, but nobody says hello. I don't get cruised. There is no such thing ... of the wink and the eye that you get from men when you walk down the street."
In the gay male culture, according to LGBT disability activists and others, emphasis is often placed on physical attractiveness. Having what is perceived to be a less than perfect body often leaves out disabled queers.
"Men are much less forgiving of a physical defect than women," said Peter Little, 55, who started the San Francisco Gay Amputees, a "peer support and discussion group for gay amputees only," in 2006. The group meets monthly at the LGBT Community Center. "For gay men â€“ I've experienced this myself â€“ there is a specific part of the community who will reject you simply because you are an amputee."
Little said that he overcame his own internalized phobia about disability after losing his lower right leg in a motorcycle accident 15 years ago when a tourist made an illegal left turn in front of him. It took him time to recover and get used to wearing a prosthetic leg, and to alter his perspective about disability, especially around attractiveness.
"It's your sense of self-sensuality that really takes a hit when this happens to you," said Little. "I was a gym bunny and was used to being looked at a certain way and so I didn't realize [that] I didn't want anyone disfigured or disabled around me. All of the sudden, I was one of those people and I had to fight this prejudice within myself."
Little's work has paid off. He returned to the gym and actively makes his prosthetic leg visible by wearing shorts. He also returned to dating and is currently in a relationship.
What is most important is that he is fulfilling a need with SFGA. According to the Amputee Coalition of America, 4.9 out of every 1,000 Americans are amputees. There are probably a couple of hundred LGBT amputees in the city, Little estimates. He said that about six people attend the group regularly, but he continues to seek other amputees.
Through the group, Little said that he has been able to reach out and help other amputees. He recently assisted a lesbian couple in the East Bay when the non-amputee partner contacted him after her partner wanted to end the relationship. After speaking with them and obtaining information to help them, the couple remained together.
"To me, that's my reward," said Little.
A special meeting of SFGA will be held Pride weekend on Saturday, June 23, from 11:30 a.m. to 12:30 p.m. at the LGBT center. The meeting is open to amputees and their partners.
The problem might boil down to the fact that issues surrounding disability and sexuality aren't discussed as Killacky, a former dancer, marathon runner, and now paraplegic, found out.
Killacky was paralyzed from the neck down 11 years ago after doctors tried to remove a slow growing tumor in his spine. Killacky has Brown-Sequard syndrome, a rare neurological condition that causes weakness or paralysis on one side of the body. He is paralyzed on the right side of his body and he lost the sensation on the left side of his body. Killacky alternates between using a cane for short distances and a wheelchair.
Killacky, the program officer for arts and culture for the San Francisco Foundation, recalled a counseling session with a therapist at the Sister Kenny Rehabilitation Institute in Minneapolis, where he spent six weeks recovering, when he inquired about advice on the return of his sexual function. The response he received was less than what he expected. According to Killacky, the th
"She should be able to answer that from anyone's perspective and experience," said Killacky.
Killacky recounted his experience in an essay, "Careening Toward Kensho: Ruminations on Disability and Community" in Queer Crips. In the essay he wrote that with the support of his partner of 12 years, Larry Connolly, they learned how to express sensual pleasure and sexual joy within the new parameters of his body.
"I wish that therapist had said, 'Start where you are, what do you feel? So do you feel your left nipple? Great! Go from there. Have that be your pleasure point,'" said Killacky. "You don't need to define sexuality around just your genitalia. You're whole body can be a different kind of map. I've learned how to ... find new movement possibilities through the restrictions and constrictions ï¿½"
Killacky was also disheartened to find homophobia within the disability community. He recounted an experience at a conference he attended in 2000 for disabled artists where one of the comedians, a quadriplegic woman, dismissed his response to a skit making fun of Las Vegas entertainers Siegfried and Roy. He approached the comedian after her performance to address her homophobic comments, but only received "Don't be such a sensitive sissy" in response.
Once again angered by the lack of sensitivity and awareness about queer disabled people, Killacky said that he set out on a goal to connect with other LGBT disabled individuals and to also educate people. His effort resulted in the award-winning film, Crip Shots, and book, Queer Crips. Killacky completed his second film, Holding On, about disability and relationships, in 2006.
Other queer crips have to deal with a variety of situations regarding disability, sexuality, and sexual orientation. A large part of the problem, LGBT disabled individuals said, is that many people don't want to deal with sexuality and disability.
"I'm a lesbian, and people would look at you and say, 'You are disabled?' [and] since disabled people don't have sex, 'how can you be a lesbian?'" said Smith.
"I don't know if it's homophobia or sexphopbia, in general, in dealing with and approaching disability organizations and disabled people," said Raymond J. Aguilera, 31, a gay man who has had cerebral palsy since birth. Aguilera took over as editor of Bent this month. He is currently in the process of revamping the Web site and plans to re-launch it sometime this summer. He also is a freelancer for the B.A.R.
"Individually, a lot of disabled people are sort of taught or discouraged from talking about sex and thinking about sex," he said. "I think that being queer adds a whole new wrinkle to the whole thing that makes it even more difficult."
Little told the B.A.R. that he believes the disability community is much less visible than the amputee community.
Part of the invisibility could be due to access issues in places where the LGBT community gathers. According to queer disabled people who spoke with the B.A.R., venues such as bars are often inaccessible or expensive to get into. According to Aguilera, those are both serious issues that "are kind of off limits to queer men with disabilities."
Queer disabled activists agreed that there was a difference between accessibility in the gay male community and the lesbian community.
"I think the lesbian community is a lot better with dealing with disability issues," said Aguilera. "I notice that whenever there is any kind of women's event at the bottom of the flier there's always information about accessibility or any kind of disability policies. It seems like the most disabled women I know are bisexual or lesbian and I kind of wonder about that, like they just have more visibility because they can get out and do more because the community is a little bit more accepting."
"The lesbian community has been on top of the whole issue more than most communities in general," said Smith. "I think there is still a long way to go and a lot of work to do. We live in an area that is very into multiculturalism, diversity, and inclusion and yet ... when they go through the list of what is considered being multicultural ... I can remember being at gay day one year and the person running down the list of all of the people that need to be represented [and] going down the list they never mentioned disability. So, my feeling is still even today disability gets pretty much left out of the whole discussion of multiculturalism."
Aguilera is hopeful that in the future disabled queers will be more visible and included in both the LGBT and disability communities.
"It definitely seems like the younger generation of queer disabled folks are being more vocal and getting out a lot more, which makes us a lot more visible," said Aguilera. "I definitely think things are improving which is good to see."
The San Francisco Pride Celebration Committee has long had a viewing section accessible to disabled people along the parade route and a space near the main stage. Tickets can be obtained at no cost. For more information, visit www.sfpride.org.