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By Kyle Stoner
Copyright by Eye Weekly.com. Posted by permission. Originally posted at http://www.eyeweekly.com/eye/issue/issue_08.12.99/news/sex.php
Ron* and Kayla* live, together with their books, their computers and their pet Lab, in a downtown apartment. Ron is in his early 40s; Kayla, in her late 20s. They have been dating for two years, and plan to get married next spring. Both have cerebral palsy. Both use wheelchairs. While Kayla can wash, dress and do household chores without assistance, Ron is visited several times a day by male attendants who are hired by the non-profit agency that runs their building.
Privacy, they both say, is the single biggest obstacle to their relationship. “At night I want to undress, to be naked,” Kayla tells me. “I don’t want to have to cover up. If my clothes are off, I have to set the alarm clock 15 minutes early to put on a nightie or a housecoat before the attendant comes in. I have to revolve my sex life around the attendants. I just have to be careful when and how and where we do it.”
Says Ron, wistfully, “No matter how much I love her and how much I want to make her happy, this is my life. There’s not a lot I can do about it.”
But Ron and Kayla, living independently as a couple, are the lucky ones. If you’re in a wheelchair — whether you were born with a disability, acquired it gradually (as happens with multiple sclerosis, for example) or severed your spinal cord in an accident — there are plenty of obstacles to your sex life. “There are always obstacles, and always options,” says Cory Silverberg, a researcher for CITY-TV’s Sex TV who is writing a book on sexuality and disability. “Lack of hand movement, lack of partners, are not facts of life which say that you can’t be sexual — they are obstacles in your way. We have professionals who are willing to spend their lives helping people get around other obstacles — how to help someone,you know, toilet themselves, how to bake a cake. Those professionals are never thinking about how to help someone masturbate.”
But there’s the rub, so to speak. Sexuality and disability is an explosive issue in the already delicate and often stressed relationship between those who use wheelchairs and the attendants they rely upon.
Says Scott McArthur, educational manager for the Ontario Federation for Cerebral Palsy, “Some people are very religious and they don’t think you should have sex unless you’re married. And some people… there’s a good parallel with cats and dogs. They’ll say, ‘You’re not going to die without a dog, so why should I be looking after your dog? I’m not here to clean up your cat litter. I’m here to feed you and bathe you and dress you and toilet you. You’re going to die without food and shelter. But you’re not going to die without sex.’ “
In some facilities, McArthur says, “staff won’t even put two people alone in the same room together, sitting in their chairs.” But other attendants and caregivers will go so far as to hire sex workers for a client,booking a room at a motel to ensure the client’s privacy and shield him from the ever-present gossip. “They make sure the person comes and they even help people give money afterwards. So they don’t get taken advantage of.”
McArthur, a gay man with cerebral palsy who uses a wheelchair himself,adds, wryly, “Prostitutes run about $200 and the motel room’s an extra$89. Since most of us get about $676 from ComSoc (the Ontario Ministry of Community and Social Services) a month, this isn’t going to be something you can turn to very often, although you might be very happy for half an hour. This is not supported by the agency, or by the union, or by other staff. It’s between you and me. I think this is a problem for people at the management level, more than at the level of the caregiver and the individual client, who arrive at their own arrangements — sometimes.”
Advocacy groups for the disabled are themselves split over the problem.Vic Willey, director of the Federation for Independent Living, is angry about the idea of ordering attendants to make such arrangements. “No one should be forced to do it against their will,” he says. “To say they can be jeopardizes the fragile, important relationship with attendants. Our civil liberties are being abused every day. We can’t get into the community, can’t move around, can’t get jobs, can’t get housing, can’t get on public transit. This is an issue that’s come up maybe once. It’s a zero issue.”
Susan Ludwig, a York Region public health nurse consulted by many disabled clients, disagrees: “It’s not a zero issue because we see people in wheelchairs as being asexual. And the dehumanization starts right there.”
In theory, disabled people (“consumers” is the current politically correct term, “clients” is another) should see attendants as their “hands and legs,” who can only turn down a request if it’s abusive or dangerous, not if it offends them. The reality is different. Sarah*, a freelance attendant for 10 years, confirms this. “In order to maintain,to introduce, disabled people as sexual beings, you end up forgetting about the attendant, who’s bringing their own baggage, cultural conditioning,fantasies, inhibitions and pains, problems of the past.”
The politics of sex and the disabled have the potential to set physically disabled people, as a group, head to head against organized labour. Race is a factor as well, since many, if not most, attendants are immigrants from the Caribbean, Latin America or the Philippines, many from conservative backgrounds with religious schooling.
Says Carl*, a longtime Bellwoods Park House staff member, “This is an issue that’s really divided the staff. Some people don’t have a problem with positioning people or putting them in bed or putting a condom on them, as long as it’s kept between the attendant and the client. Some people just completely refuse. They’re personally offended at the expectation they would do that. Management doesn’t want to piss off either consumers or the attendants’ union. So they’re more or less sitting on the fence.”
(No one at Bellwoods Park House would comment on anything for this article.The facility director, Susan Andrews, said the Bellwoods executive director was away on vacation and then referred me, to his bewilderment, to the Bellwoods accountant, but would not speak on or off the record herself. Service Employees Union Local 204 confirmed that at least one grievance has gone to arbitration over the issue of consumer sexuality.)
Says Patty Bregman of Advocacy Research Centre for the Handicapped (ARCH), “People who live with disabilities see their attendants as extensions of who they are. And sex is part of who they are. My sense is, the policy of these places is to let staff who don’t want to pass, while still meeting the person’s needs.”
Bregman says a shortage of accessible housing in group homes and independent living centres leaves many residents intimidated. And because the non-profit agencies that run various homes and centres have volunteer boards, “there isn’t a lot of accountability. They’re not well-structured to reflect the power imbalance between the disabled and everyone else. It’s built into the idea of a shared attendant. If the attendant cares for seven people and you, as one client, really don’t like them, you’re stuck.”
This is true even for those in their own apartments. Says Ron, Kayla’s boyfriend, “We have to accept, basically, whoever walks into our apartment.Mind you, if they get mad at you or steal from you, you can refuse them. Otherwise, you can’t. So if you don’t like each other, basically, tough.”
One of the issues dividing both “the disabled community” (if such a thing exists) and their advocates is just how far you should push things: how much you should obligate attendants to assist. When I ask Ron whether there should be a policy obligating attendants to help their wheelchair-bound employers have sex — with themselves, or others — he strongly objects. “Nobody should ever be coerced to do anything. If I’m in that situation, I’ll find someone who’s really willing to do this, not someone I have to force.”
Michelle Hurtubise, who runs clinics for women with disabilities at the Anne Johnston Health Station at Yonge and Eglinton, doesn’t think most have this luxury. “We just completed a women’s sexuality group,” she says. “Across the board, there was not one woman who had had a positive experience with an attendant in negotiating it.”
“I understand the fear of coercion,” Hurtubise insists. “But I also believe that there’s a way you can maintain respect for the individual and maintain the eye contact. There’s a way you can say, ‘OK, if I’m positioning you on the bed or assisting you with, for example, supporting your legs while your partner is climbing on top of you, then I can do that in a way where I’m not sexually involved. I’ve provided assistance to people with getting into bed and preparing food for their partners.”
Hurtubise admits she hasn’t been involved in actual positioning for sex. “But I’ve been involved in situations where there’s a fair amount of sexual tension in a room, because the partner is there, and I’ve been helping somebody get ready and get into bed. And then I’ve just left. And I have not been part of the intimacy that’s happening between those two people because I’ve been acting professionally.”
Says Scott McArthur, “I think the big issue that stops the conversation dead is, attendants think you’re going to ask them to masturbate people. That’s what they always think you mean by ‘sexual assistance.’ And staff really are uncomfortable with that.”
“It isn’t even to the point of masturbation,” says Hurtubise.” It isn’t even to the point of positioning. It’s to the point of ‘Do I have someone who will help me get dressed into some sexy lingerie?’ When we were trying to get an attendant to talk about her experience assisting people in this area, nobody would work with us, nobody would speak to us.”
Cory Silverberg suggests that even profoundly physically disabled people can become sexually independent, so to speak. “You have to look at what a person can do. If they don’t have fine motor control, they may be able to press themselves against a vibrator. There are vibrators you can put on the hand, and they can masturbate that way, if they can press their hands against their body. If they can’t use their hands at all, they maybe able to lie beside a vibrator. Men with muscular dystrophy often will have no use of arms and hands but complete genital sensation.” Silverberg has a promising third career retrofitting sex toys with things like tongue toggles for people with limited use of their hands. “There are toys that go over the penis but stay on it.”
Says Susan Ludwig, “I wouldn’t expect an attendant to be present during intercourse. I would expect an attendant to work with someone.” That ‘someone’ should be, in Ludwig’s view, an occupational therapist, who shouldn’t be limited to teaching disabled people how to make, say, macramé wristbands. “If you’re not that able-bodied, you’re not going to be able to use the missionary position. It just isn’t going to happen. But you can teach them to lie like spoons in a drawer, and you can teach them to use vibrators where it’s appropriate. You can fondle each other. You can have oral sex. You just have to be set up for it. Would it be so terrible for an attendant to prop them up with pillows so they could do mutual oral sex, and then leave the room?”
Is it fair to expect attendants to go along with this? Says Sarah, the freelance attendant, “There’s a huge butting of heads. What people want is the perfect employee who will show up at 5:30 every morning and get you dressed, all the tasks involved. You don’t come late, you don’t quit, you’re dependable. And the workforce that will do that isn’t necessarily the same workforce that has the time and liberty to spend their days becoming more enlightened about the world. It’s a hard job: lots of heavy lifting, lots of trying to communicate with people who often have difficulty speaking, in a language that often is your second or third. People are motivated to do a job like that because they need the money to feed their kids, or out of some religious faith.”
Sarah describes herself as “not typical at all.” She has assisted people in a variety of ways, including helping them into bed with partners and helping them have sex with themselves, depending on the circumstances and on her degree of friendship with her clients. “It’s so unfair, because this exact same workforce who might do a one-hour shift for 10 bucks when there’s two hours of travel time are helping people who turn around and say, ‘Well, they won’t help me out with my sexual health needs, and Sarah will.’ Well, Sarah isn’t going to show up for an hour appointment to do your bathroom break if it takes me two hours to get there.”
Explains Susan Ludwig, “In practice, if you leave it up to a person’s conscience, that person is making decisions for another person which should never be made for an adult by another adult. Attendants are a wonderful group of people. They have hearts of gold. They want to serve. Unfortunately,they would make more if they were feeding the penguins in the zoo. The attendant isn’t well-educated, isn’t well-paid, isn’t well-valued, isn’t well-trained. And then they’re confronted with something that nobody in our society is all that comfortable with. So they lapse into a parental type — ‘I’m not going to help you with that. You have no right to ask me to do that. I’ll clean up your shit, because it’s normal, but I won’t clean up your come.’ They need a professional college. They need money. They need training.”
Ludwig believes the problem comes down to training and management of attendant care. “Attendants say to me, ‘I think I need supervision on this. How can I go to my supervisor and say, how do I negotiate this so I can take care of this client’s needs and not feel like I’ve cheapened myself as a result?’ Supervisors will never listen to that. Supervisors are the ones who discipline them — for not wearing the right thing, for cracking their gum.”
Hurtubise says the problem lies, ultimately, with management — “I mean all management. Whether it’s unions, program supervisors or anyone else. They’ll talk about universal safety precautions, and point out they’re in general and not related to sexuality. Most of those people are able-bodied, they don’t see it as an issue. But people can’t spend the night over at their partner’s because they’re told it isn’t possible with Wheel-Trans, because they can’t arrange an attendant to get them in or out of bed there, because they don’t have privacy. It’s a nightmare.”
Perhaps the biggest sex-related problem, for both the disabled and their caregivers, is confidentiality. Kelli*, who has worked for a long time in the area of access and equality for the disabled, tells me, “I can see both sides. People are often made to do things they aren’t comfortable with.”
Lucy Costa Nyman, Hurtubise’s colleague at Anne Johnston Health Station– who is raising a four-year-old daughter from her wheelchair — believes the structure of many housing alternatives for the disabled is itself discriminatory. “In group homes, you pay rent for your room, but it’s still considered part of the house. And in most group homes they don’t allow you to be alone with anyone of the opposite sex in your room. That ends your chance of a sex life right there.”
Nyman bitterly recalls the “communication book” in the staff lounge at her group home. “Anything that happened in an eight-hour shift gets written in that book. Even, ‘so-and-so had a lot of candy wrappers in the wastebasket in his room.’ So when you talk about privacy, right there, there’s none. None.”
Robert Davidson, business agent for Service Employees International Local 204, which represents attendants at Bellwoods and elsewhere in the city, counters, “Do you think that concern is indicative of their station in life? They know full well that this communication has to go on in order to care for them. Let’s say the candy wrappers are in the wastebasket of a diabetic. Even the stuff that’s trivial could turn out to be crucial. It’s pieces of the puzzle that a professional caregiver needs to be aware of.”
“There’s so many things to negotiate when you work for a client,”says Sarah, the freelance attendant. “Where they want their toothpaste put on the counter. Whether they want their underwear pulled tautly all the way up or not. You get into somebody’s life. You hear their phone conversations. You see who visits them. You see when they’re aroused.”
Kelli says the attendant community is very small, and confidentiality is often violated. “Confidentiality’s essential, and you’d like to think it was respected. But it doesn’t happen. Word gets around what so and so wants me to help them with, and the freedom and privacy the non-disabled community takes for granted — to be able to spend the night with whoever,and who cares — is denied to us. Often people feel betrayed, but don’t complain because they’ll be ostracized by all the attendants.”
Susan Ludwig says, “If you start complaining about the people you can’t stand, word gets around that you’re a complainer. Being a little rough with you, running the water a little too hot or cold — that’ll get you in order.”
Davidson objects to this. “Revenge and vindictiveness would not be tolerated at Bellwoods or elsewhere. Part of the skill of being an attendant is to understand, to communicate, effectively and ethically. The employer[Bellwoods] is obligated to provide ongoing training to develop those skills and brush them up.”
Despite the frustrations, many, like Scott McArthur, are dead-set against creating a policy on attendants, clients and sexual assistance. They point out that, once guidelines come out, they’ll have to be followed, and since attendants are considered paid with taxpayer money, sexual assistance will become illegal.
“One of the lines in the guidelines that were before the Ministry [which, essentially, threw them into a drawer] says no consumers will have sexual relationships with caregivers,” says McArthur. “So I phoned up the Ministry and asked, ‘Is masturbation a relationship?’ and they said,’ We’ll have to get back to you on that.’ I never did hear from them again. We really don’t want any guidelines or rules on paper. We don’t want to take away what little people have.”
Victor Gascon, whose 19-year-old son Bill has cerebral palsy, agrees.”The lives of disabled people are already regimented to the max. If someone needs help to masturbate, it’s no longer masturbation even though the other person is supposed to be the person’s hands and legs. If the government makes policies, I don’t think anyone will benefit.”
Cory Silverberg believes one of the biggest obstacles to mainstream support for sexual activity among the disabled is that disabled people aren’t represented in the media as even interested in sex, let alone capable of having it.”When you live with a visible disability, you don’t see yourself in porn,” he says. “You don’t see yourself in Calvin Klein ads. You’re not on Baywatch. Except maybe once a year at Christmas you’ll have Timmy, the disabled kid, and he’s always either pitied, or he’s the big hero, or something. He’s never sexual, that’s for sure.”
Says Gascon, “There’s a constant struggle to remind people that Bill is a sexual being, and not to be ignored. How often do you see a sexy person in a wheelchair? You’re better off being a priest. They expect you to have sex more.”