A delicate affair

Though aware of risks, some parents encourage romance for their mentally disabled children

Posted: Tuesday, May 07, 2002

   The workshop was about the sexuality of young people with mental disabilities. To the organizers' dismay, only four families showed up.

   ''Parents don't think this is something they need to talk about with their son or daughter,'' said Nancy Murray, who helped plan the Pittsburgh-area workshop. ''It scares the bejeebers out of them.''

   The fears are understandable. While most parents fret about their children's initial encounters with sex, parents of the mentally disabled confront a distinct set of challenges and choices.

   Some parents -- worried about pregnancy, disease and the extra-high risk of sexual abuse -- try to steer their disabled children away from sex altogether, even as they reach adulthood. Other parents, though wary of the risks, believe their children are as entitled as anyone to have sexual relationships.

   ''There's been a profound change,'' said Steven Eidelman, president of The Arc of the United States, a national advocacy group for the mentally retarded. ''More and more parents want their kids to have somebody to love and be loved by.''

   Murray, who is president of The Arc of Greater Pittsburgh and has two grown children with Down syndrome, is heartened to encounter parents with bold ambitions for their disabled children.

   ''Their dream is that their son or daughter will have a job, will live in a house or apartment with as little help as possible, and will have relationships,'' she said. ''It comes down to educating the person about what it means to be in a relationship -- is it companionship or sexual intimacy?''

   A father in Pittsburgh, George Owens, is encouraging a romance between his daughter, Teri Lynn, and Jeff Hladio, a longtime friend who attends the same special-education school.

   In contrast to some anxious parents, Owens was delighted to find Teri Lynn, 21, and Jeff, 20, kissing on the porch swing recently. He is building an apartment for her -- tailored to her mental and physical disabilities -- at the back of their house, ''so she can explore as much independence as she wants to.''

   ''Teri has feelings that are no different than what we feel,'' Owens said. ''I'm willing to help her explore those feelings -- to an extent. I want her to collect as many experiences as possible.''

   All four parents approve of the romance, but are uncertain where it will lead because Teri Lynn, a quadriplegic who uses an electric wheelchair, needs help with such basic tasks as dressing and eating.

   ''Jeff talks about being my son-in-law, about a honeymoon in Hawaii,'' Owens said. ''It's pretty neat, but it scares the hell out of me.''

   Jeff's mother, Julie Hladio, said her son, who has cerebral palsy, realizes marriage would mean new responsibilities and taking care of Teri Lynn. ''They both would like to get married, but as families we know there are great challenges around that,'' Mrs. Hladio said. ''They're willing to not rush into it.''

   Susan Fitzmaurice of Novi, Mich., has given her son, Teddy, who has Down syndrome, steady doses of sex education since he was little.

   ''You can't be embarrassed about this stuff,'' Fitzmaurice said. ''The difference is you have to be much more specific. With a typical kid, you can give them the basic idea. With Teddy, you have to connect the dots.''

   Teddy recently turned 18, considers himself old enough to have sex and has been supplied by his mother with condoms.

   ''Here's an opportunity no one has taken advantage of yet,'' Fitzmaurice said. ''If the appropriate situation came up, I would encourage it, even though there's a risk something bad can happen.

   ''Being sexual is part of what makes us human,'' she said. ''If you take that away, you're depriving them of something central to what adults are. You're keeping them as children.''

   In some cases, the sex lives of the mentally retarded get entangled in legal complexities. For example, state courts have moved so emphatically away from the now-discredited practice of involuntary sterilization that it can be hard for a mentally disabled person to obtain a voluntary sterilization.

   The right to marry also is subject to debate; many states restrict the options of disabled people who are in guardianship or institutions. But many mental health professionals and advocacy groups say the right to marry should, as a general rule, be respected.

   Legal uncertainty also overshadows the policies on sexual activity in community-based group homes, where an increasing number of mentally disabled adults live.

   Some group homes discourage any sex among residents, for reasons ranging from state regulations to religious beliefs to fear of lawsuits. Many other homes allow consensual sex, although experts acknowledge that staff members may sometimes have trouble judging whether there has been consent.

   Martha Churchill, an attorney from Milan, Mich., has campaigned to ease legal restrictions on the relationships and sexual choices of mentally disabled people.

   Churchill wishes the Supreme Court or Congress would expand civil rights protections for the mentally disabled. The Americans with Disabilities Act, which prohibits a range of discriminatory practices, does not extend into such private matters as sexuality and marriage, she said.

   ''God gave us these urges,'' she said. ''It's not something that parents should be able to opt out of on behalf of the child.''


Published in the Athens Banner-Herald on Tuesday, May 7, 2002.

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