By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
Under Minnesota law, "conservatees" have the right to fall in love, to get married, to have a baby, and to be parents. Those rights reached paper in various states as early as the Eighties. But what's more interesting, and problematic, is the task of making such rights count for something in practical terms. As the extended-family meeting at Denny's shows, pursuing relationships often requires a group effort. And it's doubtful that family and staff would go to the trouble unless everyone was entirely enthusiastic.
"If any side had been resistant, any one of us could have dropped the ball along the way," admits Miskowic. "All we would have to do is blow off a couple dates. But both sides have been real supportive of the staffing and the time it takes to get them out together."
"Because they just wouldn't take the initiative on their own," adds Sue Walker. "We wanted to bring everyone together here to show you how we helped this happen."
It takes a village to fall in love, in other words. But this fact of life for as much as one percent of the population remains entirely off the cultural radar. The issue of sex, love, and developmental disability provokes hard questions: How do we help people who can't always care for themselves pursue the best things in life? And are we morally obliged to do so?
Yet even the groundbreaking new Sean Penn movie I Am Sam skirts the sticky issue of sex, framing Sam's ability to love purely in terms of parenting and friendship. His daughter, the subject of a custody battle, had to be conceived somehow. But the affair is left offscreen, while Sam's apparent desire for closeness is suggested only fleetingly in a few tender scenes with Michelle Pfeiffer.
Loneliness has been identified as the chief cause of depression among people with developmental disabilities--and that makes it a national problem. Consider the vastness and diversity of the population we're talking about. According to the Surgeon General, between .3 and 3.1 percent of Americans have "mental retardation" (which is the official medical term, despite a lifetime in the slang lexicon). The most common criterion for that diagnosis is a propensity to score below 70 on IQ tests, with cognitive disabilities generally broken down into four classes: "mild" (IQ 50-70), "moderate" (IQ 35-49), "severe" (IQ 20-34), and "profound" (IQ below 20). People with "mild" developmental disabilities can usually enter the work force and live independently, while most people with "moderate" disabilities need more sheltered employment and living situations. Others with "severe" and "profound" disabilities require complete supervision, though they can also learn self-sufficiency skills. Needless to say, all of the above, like the population at large, are fools for love.
Most can express the words for it, too. By far the majority of folks with developmental disabilities (an estimated 87 percent) are diagnosed with mild or moderate impairment, a proportion that jibes with the social-services picture that emerges here in Minnesota. An estimated 80,000 residents have developmental disabilities, with some 17,000 people over the age of 18 receiving support services from the state, according to the Department of Human Services. Tens of thousands live free from Minnesota tax dollars or official support.
Such a state of independence is a relatively new condition. A century ago, a man with even mild developmental disabilities might well have been castrated in the Minnesota School for the Feeble-Minded and Colony for Epileptics. As recently as the Seventies, mentally handicapped adults were put in institutions and sterilized as a matter of course. There were important local exceptions to this trend: The national advocacy group the Arc (formerly known as the Association for Retarded Citizens) was launched here in 1946 by parents of children at the Hammer School in Minneapolis. And Hammer's community-based approach caught on, as it joined the push for integrated living, eventually morphing into Hammer Residences, Inc. The group now houses James McKune, who last year enjoyed watching workers demolish Hammer's Wayzata dormitories, empty since 1989.
Minnesota is ahead of most states in other ways: It mandates conservatorship as well as guardianship, which gives conservatees the franchise, for example. Conservators often have wide-ranging powers over peoples' lives, but Minnesota law contains checks against their authority. Under one statute, for example, no guardian or conservator may give consent for sterilization unless the court approves it first.
That said, skittishness about sex among the developmentally disabled population runs deep in America (Remember Lenny from Steinbeck's Of Mice and Men?). You can detect a certain Puritan bias in even classifying mental impairment by the level of likelihood that a person will contribute to the economy. Far worse is the fascist tint of eugenics (read: selective breeding), which is making a comeback and is combined with fears that disabilities will be reproduced through procreation. Brian Abery, at the University of Minnesota's Institute on Community Integration, says such worries extend even into the field of direct-support care for people with developmental disabilities. This is no small industry, charged with tending to some 17,000 people in settings that typically involve one to six residents. The round-the-clock staff in these homes bring their own values to difficult situations.