Andrew Doucette, 22, clearly remembers being a teenager with raging hormones.
“Its mind-boggling,” he declares. “All of a sudden, things are happening that weren t happening before. I started discovering that the opposite sex was yucky. It was a whole different story.”
Doucette s emerging sexuality was complicated by his spina bifida. He wondered if girls would find him attractive. He worried about incontinence (which can “be increased during sexual arousal”).
Doucette is not alone. Most teens struggle with issues of sexuality. For young people with disabilities, there are many additional fears and concerns.
Dr. Miriam Kaufman, a physician who works with teens with chronic illnesses and disabilities at Toronto s Hospital for Sick Children, says, “There s still a really big thing in our culture if you have an obvious disability… People do have a tendency to think of you as not being sexual, or not being as sexual.”
Kaufman adds that, “every teenager thinks no one is ever going to want to be in a relationship with them. Every teenager goes through the stage: No one is ever going to love me. I m undesirable. I m not perfect enough. But when a disabled teen has those feelings, they tend to focus in on, because of my disability. ”
Kaufman reassures them by advising, “Everyone else is feeling the same way – including those cheerleaders with short skirts and flipped-up hair.”
Although sexuality is often difficult for teens to discuss, Kaufman says young people “will really grab an opportunity to talk about it when they can.”
Rick Enright, social worker at the Thames Valley Children s Centre in London, Ontario, finds that young people usually “giggle for the first five minutes” when sexuality is raised in conversation. So, when he was speaking with a group of adolescents with disabilities at Camp Woodeden s Teen Independence Camp last summer, he announced, “We re going to talk about the thing that drives you crazy. Were going to talk about sex.”
Then, encouraging laughter and learning, he gave them (a tongue-in-cheek, sexual trivia quiz of 10 questions. The first was, puberty is: a) the name of the neighbour s dog (“Here, Puberty, come here, boy”); b) the name of a statue in New York City; c) the changes in the body which lead to physical sexual maturity; d) a disease of early adolescence.
The touch of humour opened communications. Enright says it was the “best-received presentation” hes ever done. Topics included masturbation, sex without sensation, sexually transmitted diseases, contraception, pregnancy, childbearing and rearing, abstinence as choice, and personal autonomy and personal space.
When I visited the campers a few days later for a column I was writing, they were well informed and appeared comfortable discussing sexuality with me.
The first thing they told me was they had learned about sexually transmitted diseases. They were very clear about “two major ways to avoid STDs… abstinence and condoms.”
While much of the information covered was generic, they also explored specifics of some disabilities. Becky Neumann, 17, who has spina bifida, reported that this condition is genetic. But, she advised, if a woman takes folic acid from sexual maturity onward, she reduces the risk of passing spina bifida on to her child.
The young people learned about how others disabilities affect their sexuality. Kris Kenyon, 15, who has cerebral palsy, explained that many people with spina bifida have a latex intolerance, making use of conventional condoms impossible. Although they can use condoms made from animal skins or organic materials, these often have pores or holes in them, so HIV can still be transmitted.
Enright was encouraged by this groups willingness to discuss. His general experiences differ from Dr. Kaufman s. He “could count on one hand” the number of teens who have raised this issue with him. A few years ago, Enright “started to get intrigued by the fact that such a large issue was a non-issue, and the more I explored it, the more intrigued I became.”
Enright hoped to survey 50 teens on the topic. Of 150 kids he contacted over two years, 121 “flatly refused” to participate. But Enright kept plugging away. The result was a fun, upbeat, illustrated, easy-to-read book, Do Not Open until Puberty! An Introduction to Sexuality for Young Adults with Disabilities.
Although teens may not openly discuss the book s contents, Enright sees them tuck it into carry bags to take with them. He firmly believes getting information to teens on this topic is critical to helping them understand their sexuality and to making them less vulnerable to abuse.
Enright says teens with disabilities are often left out of the sexual maturation process which able-bodied young people experience. He outlines some of the reasons:
– School-based sex education programs. Enright finds that students with disabilities are “either de facto or practically” excluded from classes. Even when they are taking them, he has “never heard of a school-based education program that deals with issues of disability and sexuality, things like mobility, sensation and fertility.”
So, teens with disabilities are frequently in a “profound information vacuum” about their sexuality, with a sense it is something they shouldnt talk about.
– Diminished and delayed sexual experience. Teens with disabilities requiring attendant services frequently don t have privacy for sexual exploration.
“Most teens spend time sulking in their rooms and doing whatever it is teenagers do, which probably includes masturbation. If youve got a lifestyle that requires a lot of intervention by adults for basic things like toileting and dressing, youve got very porous boundaries in your world. How do you get a chance to read Playboy or to indulge in erotic fantasy or conversation with friends?”
Being excluded from sports and locker-room talk also contributes to sexual knowledge delays. “Good or bad, it gives you a starting place to work from to determine how much is useful information, how much is bad.
– Media. Young people with disabilities have no role models in movies, on TV or in books. In those rare instances where sexuality with a disability is depicted, it is usually portrayed as a loss or a negative experience.
With other physical issues such as lack of movement or sensation, sexuality for teens with disabilities can be confusing or even frightening. Enright hopes Caution: Do Not Open until Puberty will assist teens with disabilities with some of their issues. But he doesn t pretend to have all the answers. “I m not an expert on sexuality for the disabled,” Enright says. “I m just dumb enough to keep asking the questions.”
Kaufman says “what [teens] often think they know, they dont actually know. But they are more knowledgeable than people think.” She says the biggest question youth with disabilities have, but don t ask, is, “Can I have sex – am I a normal sexual being?”
Emphatically, Kaufman says, “The answer is almost always yes, if you use a realistic definition of sex and sexuality. Unless you re in a coma, you re a sexual being and you can have sex.
“Some people can t have intercourse. Some can have intercourse, but cant feel it. Some people can have intercourse and choose not to. There are all kinds of parameters. We in general working with teenagers are trying to help all teenagers get beyond the point of equating intercourse and sex, because it leads to all kinds of risks.”
Kaufman finds kids don t always ask questions, but they are “avid listeners” when she raises the issue in a trusted, confidential atmosphere. Sometimes, she looks up answers about specific disabilities in the sexuality chapter of her book, Easy for You to Say: Q & A s for Teens Living With Chronic Illness or Disability. (She says kids often think it s “goofy” she has to look up something she wrote.)
Both Kaufman and Enright express concern about the vulnerability of teens with disabilities to physical, emotional and sexual abuse.
“We train these kids with medical problems and disabilities to be compliant and to do what we tell them, and to not put up a fuss and to let strangers look at their naked bodies,” says Kaufman. “It becomes very difficult for them to say no. Because of that, we as health care professionals really put these kids and teenagers at risk.”
Teens who, because of a disability, “can t run away from an assailant or yell” are particularly vulnerable.
Enright thinks the best way to protect youth is to educate and inform them. He says often kids with disabilities have a “localized view” of themselves because, “from infancy, they have had to depend on adults to do things for them.
“They are often quite resistant to saying, This is my life. How big is the personal bubble of a 17-year-old boy who still has someone helping him go to the bathroom?”
In the case of an adolescent with quadriplegia and no lower-body sensation, “How does he tell the difference between an attendant worker catheterizing and inappropriate sexual contact?”
Kaufman says a more subtle form of abuse involves a young woman who may think: “With my disability, no one s ever going to want me. This may be the only chance I m going to get at sex. This is not the person I would choose and it seems kind of creepy, but maybe I should do it.
“We do try to encourage kids that there are possibilities for love and romance and affection despite the disability, and they can wait for that to happen.”
Doucette believes the best thing we can do for youth is to encourage independence. He says the confidence he developed as a child attending Sunnyview Public School in Toronto has helped him to be more outgoing with women. Throughout his teenage years, he “discovered a lot of things about [himself] through trial and error… whether a sexual act or liking a certain type of person.”
He considers his earliest sexual experience the first time he kissed a girl. His first intercourse was at age 16, “after a lot of talk and thought. It wasn t something I just jumped into.
“Sex to me is more than just intercourse. Sex is everything from kissing to intercourse. Doucette asserts.
Now involved in an intimate relationship, Doucette thinks dialogue is the best route. “In talking openly, we show teens that it s okay to talk about it, that you should talk about it. The worst thing we can do is have somebody who doesnt know, who doesn t want to talk about it.
“The younger it happens, the better… Teenage years are the most awkward years. Talking about things like that during those years can maybe make it a little easier. They ll be thinking, if someone is willing to talk to me about this, maybe I can ask them some questions.
“That applies to being a teenager in general, but being disabled makes it a little tougher. Its hard to discover things when youre wondering what s going on and there s nobody there to tell you or talk to. It can make some people just close up into a little shell. It can make some people really open up.
“I learned at a very early age, even before I was a teenager, just to be myself, and people are either going to like me or not like me,” Doucette concludes. “If people like me, they ll want to be around me. If they don t like me, well, I don t want to be around them. To me, it s that simple.”
(Lynne Swanson is a freelance writer living in London, Ontario.)
WHAT ABOUT TEENS WITH INTELLECTUAL DISABILITIES?
Teenagers with intellectual disabilities may have delayed cognitive and adaptive abilities, but their physical changes usually keep pace with their peers.
“What s it all about? What s this erection all about? What s this menstruation? What are these wet dreams?”
Chris Rowntree, psychometrist at The Child and Parent Resource Institute (CPRI) in London, Ontario, says those are frequently confusing issues for youngsters with intellectual disabilities and their families.
The kids have the same emotional and social interests in “hanging out with teenagers and meeting members of the opposite sex and expressing sexuality. That s no different whatsoever,” Rowntree says.
When their child is not as mature developmentally, parents often experience greater “trepidation” than other parents. Because of their concerns, parents may be reluctant to discuss sexuality. But Rowntree strongly encourages parents to open up dialogue.
“If theyre not going to get information from their parents, where are they going to get it?” Rowntree asks. “If it s not talked about, where is the sexual energy going? Whats going to happen?”
Often, the result of not chatting about sexuality with teens who have disabilities is “some inappropriate sexual expressions,” including “behaviours which may be illegal or that make a lot of us feel very, very uncomfortable.”
Examples include staring at or touching someone else s body, public masturbation, a young man kissing his sister “in a romantic, intimate manner” or stealing and hoarding female underwear.
Rowntree thinks that young people with intellectual disabilities have difficulty making sense out of events they see in the media, like music videos, television advertising and pop rock tunes. While those messages confuse most teens, one with an intellectual disability may “pick up on aspects of the depiction and act it out themselves.”
Rowntree gives the well-known example of Michael Jackson grabbing his crotch. “Parents say, We re trying to get our son to get his hand out of his pants and he points to Michael Jackson. Whats the message going on there? It s one of confusion for our teenagers.”
Or, on late night television, a seductive woman “invites you, encourages you, implores you, to give me a call and we will talk dirty. ” One family of a teen with an intellectual disability discovered hundreds of dollars in 1-900 calls.
Rowntree encourages parents to use those situations to stimulate discussion. He says this can serve as a “learning opportunity” to convey a “sense of [the familys] values.”
The media often portray relationships as “boy meets girl, then boy and girl end up in bed.” Rowntree suggests talking to your teen instead about rewards of “friendship first, boyfriend/girlfriend second and intimacy [maybe] third.”
Abuse of youth with intellectual disabilities is always a concern. Although there is no law governing consent for people with intellectual disabilities, there are serious issues about sexual victimization of a person with an intellectual disability. “It creates a really grey area that requires a lot of debate,” says Rowntree.
“Sexuality is a beautiful thing. It doesnt deserve to be maligned like that.”
by Lynne Swanson
PUBLICATIONS:
Caution: Do Not Open until Puberty! An Introduction to Sexuality for Young Adults with Disabilities
By Rick Enright
Available from: Devinjer House
P.O. Box 130
Sparta, ON N0L 2H0
Cost: $9.95 plus $2.50 S&H
Easy for You to Say: Q & As for Teens Living with Chronic Illness or Disability
By Miriam Kaufman
Published by Key Porter Books
Introducing Sexuality: A Guide for Presenting Sexual Issues to Adolescents and Young Adults with Developmental Disabilities
By Neil Butler, Rhonda Gilby, Jill McIntyre and Chris Rowntree
Available from: Child and Parent Resource Institute
600 Sanatorium Rd.
London, ON N6H 3W7
uploaded on 29-1-2004