Getting it on when you've got a disability
Jill Allen is intelligent and outgoing, and has been interested in boys since the third grade. But the South Burlington resident only recently started dating, which is pretty late for someone her age -- 27. Allen has cerebral palsy and uses a wheelchair. And it's not easy to envision oneself in a relationship when most prospective partners assume that romance is off-limits. "Many people believe that people with disabilities have no sexuality, are sterile, or act sexually and are therefore 'deviant,'" explains Allen. Another assumption: that such people are asexual "because they can't get any," she adds.
These are all misconceptions. And Allen, who earned her Master's from the University of Vermont in Disabilities Studies and works as an information referral specialist for the Vermont Center for Independent Living, is out to set the record straight. "I'm passionate about disabilities and sexuality because I'm a person with a disability who expresses my sexuality," she states. "Sexuality is possible for people with any disability. It's just a matter of patience and creativity."
Allen will spread this gospel at an October workshop sponsored by the Vermont Parent Information Center (VPIC), a nonprofit that helps families advocate for their kids with special needs. Allen will be joined by pediatrician Dr. Barbara Frankowski, who gives sex talks to Burlington middle-school students. Frankowski, who acknowledges that even teachers and doctors have trouble tackling this topic, says she'll advise parents, "Be aware of kids' sexuality and don't ignore it. Start talking about it early, as all parents should. Be aware that it will be more difficult if your child is disabled. And the message can't be don't do it, because that's not humanly realistic."
According to VPIC's Jillian Kilpatrick, the workshop was prompted by the volume of sex-related questions the organization fields. "Parents are afraid that if they talk to their kids about sex, it will make them sexual. The most dangerous thing you can do is not talk to your kid," she suggests. "We hear about students who are potentially getting into legal situations because of inappropriate sexual conduct" -- behavior that arises because an adolescent with a developmental disability has never been taught how to handle his raging hormones.
People with disabilities are particularly vulnerable to sexual abuse, says Katherine McLaughlin, a sexuality educator with Planned Parenthood. Those with developmental impairments are especially at risk. And 99 percent of the time, McLaughlin adds, the abuser is not a stranger. This happens in part because kids with, say, mental retardation, are "often taught to please, to be compliant, to do as they're told," McLaughlin explains.
"The tendency is to treat them as children," she says. "They hug someone they don't know and we don't stop it. We say, 'Isn't that cute?' If a typical 17-year-old hugged a stranger, we would stop them." This double standard sets kids up for harm.
Even when students are mainstreamed and attend health class with everyone else, key concepts can easily be missed. Kids who are disabled are often isolated, so they're not privy to the casual information that's passed among peers to fill in where adults leave off. Formal explanations may not be concrete enough, and essential information may be overlooked, such as the difference between public and private. That's a no-brainer for most kids, but some need to have it specifically explained that masturbating on the school bus, for example, is not OK.
Stressing sexual safety is essential. But so is promoting safe, healthy sex, according to Allen. "Education that equates sexual abuse with touch is bad because it's only half the story," she argues. "You're teaching about the bad touch, but not the good touch." Promoting a positive sexual message isn't just a matter of mechanics. It also requires unlearning the lessons of a society that considers you asexual.
Allen had what sounds like an ideal upbringing. The twin of a sister who is not disabled, she was mainstreamed from preschool on. Her parents talked openly about sex and made literature on the subject available to the girls. In fact, Allen was the kid who taught everyone else about the facts of life. But all that wasn't enough. "What was missing from my sex education," she explains, "was viewing myself as sexually desirable."
She didn't get that message from boys, because none was ever interested in her romantically, she says. A lifetime filled with frequent medical exams, and the regular experience of being dressed and bathed by others, taught her to disassociate being naked in front of another person with sex. And being accustomed to having professionals physically manipulate her conveyed that she didn't have the right to privacy, or to have control over her own body.
In addition to adjusting such attitudes, learning sexual satisfaction is all about figuring out what feels good. When lack of feeling -- or pain -- comes into play, getting it right can take creativity. "People with physical disabilities say they're able to do their orgasm mentally," Allen reports. "They can experience sexual arousal in other parts of their bodies and share that with a partner. It's not just about getting into the missionary position and getting the penis into the vagina." Loss of feeling below the waist in men doesn't necessarily equal impotence; erections are automatic physical responses that can still happen, and be enjoyed.
People whose movement is impaired may need help preparing for intimacy -- be it dressing (or undressing) for a date, being positioned in bed, or putting on a condom. Assistance may come from a lover -- or, for solo sex or when the partner can't manage -- an attendant. Negotiating such requests is sometimes tricky, and the whole arrangement may sound unromantic, but it can work just fine, Allen suggests. And it's a lot better than doing without. "When you have a disability," she says, "you either roll with the punches and deal with what you're dealt, or you're angry all the time. I do get angry," she adds, "because I'm sad that I haven't dated, and I am very much horny, and I do have sexual energy and I have a great personality that I want to share."
"You're not going to be able to change what you are, so you might as well work with what you have," says Ben Brown, a 29-year-old South Burlington man. Like Allen, Brown has cerebral palsy and uses a wheelchair. And like her, he started dating late. He's been living with 29-year-old Sandy Schacter, his first girlfriend, for four years. Schacter also has CP. She and Brown both asked to use pseudonyms.
"I was the only one in my school who was disabled . . . so I didn't have any peers to bounce things off of, and there was really no one to relate to," Brown recalls. "That frustration put all my energy into just getting by. I wasn't really looking at the social side. By the time I was in college," he continues, "if someone looked interested in me, they'd get a nudge and a wink from a friend and I'd hear them whispering, 'He's in a chair.' I don't know if it was a misconception that I couldn't function."
Schacter tells a similar story. "Before I was in college I didn't run into any disabled people," she says. "My friends and cousins were all dating. I felt like an outcast." Although she was friends with boys in her classes, "in terms in romance and courtship, I don't think I was looked at that way. My main social life was with my parents."
Brown and Schacter met through an online dating service shortly after he moved out of his parents' house. For their first date, they met at a restaurant to which Brown could roll alone. He doesn't drive, and preferred not to arrange for a ride. "I didn't want to broadcast that I was going on a date," he explains. "I wanted some privacy."
Getting around remains challenging for Brown and Schacter, so they don't go out very often. Other than that, though, they consider their relationship "typical" -- including in bed. "The hard part for me was finding a date," Brown says, "getting to the point where sex was even an issue. Once you have that, it's just a matter of figuring out what works."
A disability that happens later in life can redefine a romance. On April 19, 29-year-old Andrea Mallar of Essex Junction was riding through the Appalachian Gap on the back of her fiance's motorcycle when they were hit by a car. Mallar was thrown in the air and landed on her back, shattering her L-1 vertebrae. Two months later, she left the hospital with eight rods and four metal screws in her back, no feeling in her legs, a loss of control over her bladder and bowels, and little hope of walking again.
After nine weeks of rehabilitation, however, Mallar started regaining sensitivity. Today she can feel from the knees down. She can cover up to about 100 feet using leg braces and a walker. She's looking forward to refitting her Jeep with hand controls. But her relationship will never be the same.
"The accident totally changed our lives," Mallar says. "In some ways we've become closer." Her boyfriend has become her caregiver, often assisting in very personal ways. "Sometimes when I'm having trouble cathing myself, he has to do it for me," she reports. "My bowels are screwed up, so sometimes I have to give myself an enema, and if I have an accident he has to clean it up."
Sex is also different, Mallar says. "We used to be intimate every day, but now it's monthly sometimes. The positions are different, because if he puts too much weight on me, my back's really fragile." Before the accident, Mallar was looking forward to an October wedding. Those plans are now on hold. "He wants me walking," she says.
Men are at the highest risk for becoming disabled between 15 and 22 -- the age of contact sports, reckless driving and other dangerous activities. Patrick Standen of Burlington was 16 when a car accident left him paralyzed from the navel down. Now 41, Standen teaches philosophy at St. Michael's College. He often can be seen whipping down the Burlington Bike Path in his sporty chair, his muscular arms pumping the wheels. In 1996, Standen married his high school sweetheart. The couple is currently childless, "but we're working on that," he says. "Sexual drive doesn't dissipate because of a disability. Certainly in my case it didn't."
Standen believes he was able to roll right back into his social life following the accident because he was young, a good student and athletic, and because "I didn't see my disability as a disfigurement or an obstacle." Supportive family and friends also helped. Most important was his rehabilitation at Craig Hospital, a Colorado institute specializing in spinal-cord injuries.
Standen sees a big difference between how later-onset abilities are handled here and out West. "In the East they still treat you as someone who's damaged, and get frustrated because they can't fix you," he suggests. "In the West, it's more practical and hands-on." At Craig, Standen met people in wheelchairs who were married and sexual and had children. The teenager's rehabilitation also included sex education and sessions with a sex therapist. "The attitude was just, 'Here's what you do,'" he recalls. "I dealt with it as I did a lot of the other issues I did in life. I always just figured that if I wanted to have a full life, I'd be sexual and I'd just have to compensate."
Standen also says attitudes also differ between the genders. "Men say, 'You can't get it up, can you? I would kill myself if I were you.'" But when Standen returned to Essex High School he had no trouble finding women to date. His paralysis may even have helped, he suggests. "For a lot of women, seeing a male wounded or disabled or vulnerable, I think they were attracted to that. It brought out their maternal instincts."
As for intimacy, Standen's "first awkward sexual moments were no different from anyone else's," he says. Although he admits to having his share of "silly experiences and stories about things not working properly, or things falling out of things," he doesn't believe a disability matters much within a caring relationship. "Sex is a multifaceted thing," he points out.