Sunday, May 07, 2006

Romantic Life Of The Disabled

Mary Kate Graham’s boyfriend, Gary Ruvolo, is fond of recounting every detail of their first date 13 years ago and each candle-lit anniversary dinner since.

“God help me,” Graham said, rolling her eyes with affectionate indulgence.

Graham and Ruvolo, both 32, accept each other’s foibles with tenderness. The one time their romance was in trouble – a girl “was spending too much time at Gary’s house and I didn’t like it,” Graham said – they spent six months in couples’ counseling and worked it out.

Their next hurdle will be moving from their family homes, both in Brooklyn, to a group residence. There, for the first time, Graham, who is mentally retarded, and Ruvolo, who has Down syndrome, will be permitted to spend time together behind closed doors.

The pair were coached in dating, romance and physical intimacy by a social service agency that is at the cutting edge of a new movement to promote healthy sexuality for the 7 million Americans with mental retardation and related disabilities.

The next step

In what experts say is the latest frontier in disability rights, a small but growing band of psychologists, educators and researchers are promoting social opportunities and teaching the skills to enjoy them, often over the objections of protective parents.

A generation ago, young adults like Graham and Ruvolo were generally confined to institutions, with no expectation of a normal life. All that changed in 1975, when a court order closed the notorious Willowbrook State School on Staten Island, N.Y., and moved its residents, and others like them across the country, into community settings to live as fully as their limitations allowed.

That could include attending neighborhood schools and holding paying jobs. Now many men and women in their 20s and 30s, encouraged from childhood to be independent, expect the same when it comes to expressing their romantic and sexual needs.

The prospect of their children being sexually active often alarms parents mindful of the high rates of molestation among the mentally retarded. And agencies whose programs are at least partly financed by the government have been more likely to emphasize the prevention of abuse, disease and pregnancy than prepare clients for intimacy.

“Plenty of people still believe that the answer to this is abstinence,” said Philip Levy, president of the Young Adult Institute, a 50-year-old agency for the developmentally disabled that has been a trailblazer in offering sexuality workshops and social activities like the ones Graham and Ruvolo attend.

“But if you hide from this issue it will come back to haunt you,” added Levy, whose agency serves more than 20,000 people of all ages in the New York metro area. “Plus, once you train people to think for themselves, and give them a sense of promise, to not follow through is really cruel.”

Virtually all agencies endorse the right of a consenting adult to have a sex life, but formal classes in dating and sexuality, like those the institute offers, are rare.

“Informed choice is a major theme in the field but actual programs to support a sexual life aren’t out there,” said Charlie Lakin, director of research at the Institute on Community Integration at the University of Minnesota, who says that other agencies are buying the Young Adult Institute’s staff training materials and inviting their staff members to speak.

Parental permission

Graham’s mother’s first reaction was fear when her daughter’s social workers asked permission to teach her about dating and sex.

“My eyes got wide when they said this could happen,” said the mother, Maureen Graham. But more quickly than most she saw the logic: “I always wanted Mary Kate to have as close to a normal life as possible,” she said. “So how could I not want this for her, too?”

“This” includes the ring Mary Kate Graham wears, two hearts intertwined, a gift from Ruvolo. The couple talk on the telephone several times a day; go bowling, to the movies or to a restaurant most weekends, usually with their mothers in tow.

“They are so good to each other, so supportive,” Maureen Graham said. “I don’t know if they’ve already had sex but they’ve been pretty intimate with each other and that’s OK with me.”

Her blessing aside, Ruvolo and Graham say they intend to save themselves for marriage. “Before that, it’d be no good,” Ruvolo said.

At the institute, despite freewheeling talk, the goal of both staff members and clients seems to be fostering loving and lasting relationships.

Fyne and others have learned that social isolation is a more pressing issue than sexuality. At an early class, Fyne asked students whether it was “OK to have one partner in the afternoon and another in the evening?”

The response, she said, was a wake-up call.

“I don’t know how to get a date, Bobra,” one student called out. “So the rest of this is just garbage.”