By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
By Jesse Marx
Consider an anecdote related by Abery, who for seven years has trained people with mild disabilities to become "bridge builders" and encourage romantic relationships among those with more "severe" disabilities. In one instance, he recalls, a male resident in a group home who wished to court a female housemate faced stern admonishment from staff. "The response went something like, 'Well, of course she can't develop a relationship with him, because if it ended up in a sexual encounter that would be like incest.'"
Such attitudes, however, are increasingly rare. "Most of the time, staff are directed to look at people as sexual beings," says Rick Cardenas of St. Paul's ACT (Advocating Change Together), which is part of the self-advocacy movement that encourages people with disabilities to fight for their own rights. "I think that that's a change from even ten years ago, when it was unstated. But the main issues for group-home owners are still: Who's actually getting screwed, literally; and don't let anyone get killed."
Safety will always be the overriding concern of any conservator or care provider, and for obvious reasons: The law holds them responsible for exposing people in their care to pregnancy, disease, and abuse. And, the sad fact is, the overwhelming majority of adults with developmental disabilities report some kind of abuse in their lifetime.
"The aspect of all this that is extremely complicated is that anyone over 18 who has been diagnosed with 'mental retardation' is considered by law a vulnerable adult," says Beth Fondell, director of advocacy at Arc Hennepin-Carver. "You talked about industry standards--there really aren't any. I've been on the advocacy end, of promoting personal choice and individual service plans around sexuality and socialization. But I've also had to implement the practices in homes. And it's not clear what we should do. Are there gray areas? It's all gray."
"Criminal law is not progressive in this area," agrees attorney Bud Rosenfield, of the Minnesota Disability Law Center. Take the not-so-theoretical situation of men and women who are gay and have developmental disabilities. Because their dating pool is so small, these folks usually seek out partners who are not disabled, though their choices can be subject to the approval of conservators with broad powers. The hitch is, even if a partner without disabilities seeks, and receives, a conservator's permission to pursue a sexual relationship with the conservatee, he or she is not immune from prosecution.
Robbie Weisel, who has trained caregivers in sex-education techniques with Planned Parenthood, empathizes with the tough position residential staff find themselves in. "We're good at saying, 'No, you can't do that,'" she offers. "We are not very good at helping people understand what they can do, and what's okay. To have someone other than the couple help them understand boundaries is kind of like having someone be the third wheel: How can you make laws to help people be in the middle of somebody else's relationship?"
All this can be even trickier when the third wheel is a parent. Toni Parrish is guardian of her 25-year-old daughter and fully supports her choice to date. "My husband, when I even broached the subject, said, 'Absolutely not'--his little girl and all that. And I said, Well, your little girl has a mind of her own, and if that's what she wants to do, then our responsibility here is to make sure that she's living her life."
Safety aside, the idea of letting people make bad choices, either as protectors or matchmakers, may be the hardest for caregivers and parents to swallow. "Human relationships take a lot of different forms," says Canadian sex-abuse counselor Dave Hingsburger, who recently conducted an Arc-sponsored seminar at the Mall of America titled "Healthy Boundaries, Healthy Relationships." "If I had the right to intervene in a lot of people's relationships, I would. So we have to use similar criteria: Is this about us and our values, or is it really about the life that the person with the disability is leading?"
Still, you can't do nothing. The paradox might be that people with disabilities are more vulnerable as a consequence of our reluctance to enter the fray, and counter society's sex-negative messages. "What we've discovered is that a lot of folks with disabilities don't report abuse because they get abuse and sex mixed up in their head," Hingsburger says. "They're told that sex is bad, sex is dirty, sex hurts, and sex will get them into trouble. Well, abuse feels bad, dirty, and they feel like they're in trouble.
"The issue for me is that people are not vulnerable because of their disability; people with disabilities are vulnerable because of the system they live in. People with disabilities aren't voiceless, they just aren't being listened to."
Hingsburger and other counselors have become sex educators of last resort for a generation of adults raised to believe they weren't supposed to have those kinds of feelings. Yet teaching people how to say "no" and how to determine what makes "appropriate" behavior is difficult when the students are at once eager to please, live in homes with a high staff turnover, and have difficulty understanding abstract concepts. A birds-and-bees discussion--much less a map of fallopian tubes--will not cut it here.