Let's Talk About Sex!

If you’re sexually active or thinking about becoming sexually active, it’s important to get the facts so that you can stay healthy and safe. For example, it’s important to know how to prevent pregnancy and how to protect yourself against sexually transmitted infections (STIs) such as HIV/AIDS.

Many teens and young adults with disabilities have additional questions and concerns about becoming sexually active. You might feel awkward about discussing them with your parents, physician, and girlfriend or boyfriend. That’s completely normal. Learning more about sex and relationships can help ease your concerns, and help you decide if you’re ready.

Before you become physically intimate, get to know your partner – and yourself. Talking honestly about sex, including how ready you feel, your likes and dislikes, and your concerns, is part of sexual well-being. Lynda Roy, health promoter for The Anne Johnston Health Station, a not-for-profit community health centre in Toronto, says that couples who are thinking about becoming sexually active should feel comfortable sharing their thoughts with each other. She adds that, to be healthy sexually, it’s important to have positive self-esteem, a sense of control, and a sense that you can make choices regarding your body, as well as access to the information to help you make those choices.

To start, consult a reliable source, such as a physician, nurse or one of the resources in “Learn More.” There may be programs in your area that focus specifically on sex and disability for young people. For example, The Anne Johnston Health Station has run the Sex-Ability program since 2000 for people with disabilities aged 13 and up. Roy explains that it focuses on sexual health rather than reproductive health. “It’s more about a particular time in a person’s life. It’s about pregnancy options and it’s about safer sex. Sexuality and sexual health are things that we have throughout our lifetime. We’re born as sexual beings, we die as sexual beings, and whether or not we are being sexually active, we are sexual beings, and so that’s what we focus on.”

Many young people think that they have to go “all the way” in order to be “sexually active.” Roy says that when participants arrive at the SexAbility program, their biggest misconception is that “sex” only means intercourse. “People don’t see other things as equally valuable.”

The truth is, there are many ways to be intimate with another person, including hugging, kissing – even just talking. Sharing your interests with someone, for example, helps bring you closer together.

Sarah, 27, who has cerebral palsy and has been in a relationship with the same man for about five years, considers friendship to be one of the factors in a successful relationship. “Common interests are just as important as intimacy for our relationship to stay strong. In fact, it makes the sex better!” She also considers “open communication” to be an important factor.

Steve Kirk, a social worker at Grandview Children’s Centre in Oshawa, Ont., also counts communication as an important factor in a relationship, along with trust, honesty, love and intimacy. It’s a topic that’s discussed at Grandview’s six-week “Relationships and Sexual Health” workshop, which it launched five years ago in collaboration with the Region of Durham’s Health Department. The workshop usually runs in the spring or fall, and it is open to Grandview’s clients.

One of the best books on the subject is The Ultimate Guide to Sex and Disability, which contains an entire chapter on communication. You might think that it isn’t a big deal, but Dr. Miriam Kaufman says that in early drafts of the book, she and co-authors Cory Silverberg and Fran Odette had even more content on the subject. “We cut out probably a chapter’s worth because we knew that people were going to be reading the book and think- ing, ‘Okay, where’s the sex?’”

The book has a great number of topics, including how to pleasure yourself. (At the Grandview workshop, Kirk says, “Is it okay to masturbate?” is the question he is most often asked about sex. The answer is “Yes.”) It also has diagrams, exercises and information about sex and various disabilities and conditions.

You can also consult other reliable sources, such as your physician or the resources listed in the box above, for information about contraception and STIs.

Sarah talked to other women with disabilities about their experiences. She suggests that youth talk with others of the same gender, and that people shouldn’t be concerned about having intercourse at the beginning of a relationship – it takes time to get to know your partner’s physical limitations, and vice versa. “There are many aspects of sexuality to explore. When it becomes a challenge to get to the ‘end,’ the joy is lost.”

Sarah cautions against rushing into things. “I was at a point in my life when I was finding out that a lot of my peers had become sexually active, and I felt I wasn’t moving fast enough,” she recalls. She wasn’t dating the person she had her first sexual experience with, and says she took unnecessary risks to lose her virginity. “I learned that an important part of having a good sexual relationship is self-confidence, disabled or otherwise. It’s not a game, and it’s not about who can become sexu- ally active first, or keeping up with your peers. Do it when you’re comfortable with somebody.”

Dr. Kaufman’s advice for young people who are thinking about becoming sexually active is to get to know yourself first. “It’s really important to have explored, in your head, what you think seems exciting or interesting sexually, and to have figured out what gives you sexual pleasure,” she says. For example, find out how you like to be touched by touching yourself. That way, you’ll know which parts feel great when stimulated and which don’t.

It’s important to prepare to talk about what you do and do not enjoy sexually. You can practise this while you’re alone: “Could you just move a few inches?” or “I don’t like the way that feels” or “Wow, that’s perfect, keep doing that!” When a person has explored and knows their preferences, Dr. Kaufman says, he or she is sexually active – just not with others yet.

There are several myths about sex and disability, such as “people with disabilities aren’t sexual” and “people with disabilities don’t need sexual education.” Dr. Kaufman and her co-authors devoted the first chapter of their book to debunk- ing these and other myths. “People are really uncomfortable talking about sex and disability,” says Dr. Kaufman, adding that today’s young people were “brought up to pretend that they don’t notice that anybody is different than they are.”

She also believes that people without disabilities are afraid of “catching” a disability. “I can’t believe how many kids have told me that their friends’ parents don’t want them getting together because maybe they could get sick, too.”

To complicate things further, if an able-bodied person or someone who does not have a “visible disability” begins a romantic relationship with a person who does have a disability, they may be worried about how it will end. “When it comes time to split up, [they worry] that everybody will think they’re awful, for splitting up with somebody who’s disabled,” explains Dr. Kaufman. “Others might say ‘How could you do that to a person with a disability?’ which is really stupid, you know, because everybody splits up.”

Overall, sex and disability are not often discussed, says Dr. Kaufman. “Our book was part of a growing movement of more talk and openness around sex and disability. There’s more to be done, but I think there’s more and more dialogue.”

Dr. Kaufman is glad that the media are starting to broach the subject of sex and disability. She cites an episode of Degrassi: The Next Generation in which a character with a disability worries about his ability to have sex with his girlfriend because he initially doesn’t become aroused with her. Dr. Kaufman also liked the film Murderball, which includes a discussion about the sex lives of American wheelchair-rugby players. Scenes like these raise awareness that sex and disability can go together.

Roy points out that media representation still has a long way to go. “We don’t often see people’s sexuality expressed. It’s a certain type of person who we see having a healthy sexuality, and it’s usually someone who’s young, thin, able-bodied, really, really attractive and white. Anybody who doesn’t fall into that category doesn’t have a sexuality, if you look at what the media depicts.”

Sarah has noticed more media representation of people with disabilities, but says, “The jury’s still out for me on whether or not [sexual] media images empower people with disabilities. It concerns me that they could do the opposite.”

Sarah points out that youth with disabilities shouldn’t assume that what characters on TV are doing sexually is what they should also be doing – instead, explore your own preferences.

Lynda Roy believes that people with physical disabilities should view their disability not as something that’s wrong with them, but simply as a difference. “A difference doesn’t mean it’s bad – it’s just a difference,” says Roy. “A disability is a normal part of life. We’re often told by society that our bodies are not attractive, that our bodies are abnormal, and...difference is equated with something negative.”

Roy thinks that feeling sexy and beautiful does not necessarily have to start with someone else telling you that you’re sexy and beautiful. “Often, it’s a process. Making time for yourself, reading a good book, going out and watching a movie that makes you happy, makes you laugh or even cry can all be ways of making yourself feel good.”

Feeling sexy begins with feeling good about yourself, adds Roy. “Celebrate who you are and who you are becoming!”