By CP Staff
By Olivia LaVecchia
By Chris Parker
By Jesse Marx
By John Baichtal
By Olivia LaVecchia
By Jesse Marx
By Olivia LaVecchia
James McKune is rehearsing his Valentine's Day speech. "I'll say, 'Sarah, you are wonderful. You're a very beautiful lady. And you never cause trouble. And you don't say nothing to anybody. Sarah, you've been so wonderful. You're a very smart lady. And you're very lucky to have a guy like me.'"
The object of his tribute smiles shyly and looks away. Both her parents are at the table, eating lunch at Denny's in Wayzata. So are the program director of her group home, her boyfriend's conservator (a kind of court-appointed guardian), and an employee from his residence. This clan gathering has been convened to speak with City Pages about the most personal of all connections between Sarah Marie George and James McKune: their love.
If it were you, you might feel trapped in a Eugene Levy scene from American Pie. McKune, however, seems used to talking about such things with strangers, while George escapes the hot seat to concentrate on her food. Both depend in practical ways on the people sitting around them today. The two rarely go out on dates without accompaniment; they live in different suburbs and can't drive or navigate the bus system. Both have developmental disabilities: George was born with Down's syndrome and she requires help with such tasks as dialing the phone to call her boyfriend. McKune has a mild intellectual disability but he can call George without assistance.
Both are adults: James McKune, at age 64, is the oldest one here, his gray hair thick enough to sweep romantically to the side. Sarah George is 31. ("Boy, that's not bad," James quips.) Yet the two are not their own guardians (or conservators), which makes their most personal life choices a social decision.
Suddenly Sarah coughs. "You gonna be okay there, honey?" her companion asks, touching his hand on her shoulder.
This was how Sarah's mom, Sharon George, found the two when she first met James. She remembers the 1999 awards ceremony held by Opportunity Partners, where Sarah and James attend life-skills classes and perform manual-assembly tasks for pay. "When I got there, Sarah and James were sitting together waiting for me," Sharon says. "James cheered for every single person that got an award, and he was so proud of Sarah. Then we had a buffet lunch, and as we were waiting in line, he kept talking about what they should eat and shouldn't eat--that you shouldn't take the coffee
because it just made you nervous. We sat down, and he told me how lucky he was to have Sarah Marie as his girlfriend."
They've had relationships before, but never this serious. McKune and George go shopping; they exchange birthday cards; they celebrate holidays together. James makes taco dinners for her. On his day off, Wednesday, he meets the van that takes her to work and wishes her "a good morning, a good afternoon, and a good night," planting a kiss on her forehead. Last Valentine's Day, the couple slow-danced into the night at a party.
Those around George notice the change in her. "She'll start thinking about something and then say, 'I want to write a letter to James,'" says Cathy Miskowic, who is program director at the residence Sarah shares with two other people. Miskowic assists Sarah's romantic correspondence by transcribing what Sarah wants to say, then printing it clearly so Sarah can copy it in her own writing. "It's a good motivator, you know: 'You want to go to bed so that your eyes aren't puffy for James tomorrow.' Sarah doesn't like to waste time sleeping."
Still, Sarah is adept at stating what she wants and doesn't want from people, James included. "She'll say, 'I want to go to the dance,' and then we have to figure out what dance," Miskowic laughs. "And there was a period a year and a half ago when she didn't want to see him for a month or so."
Such independent-mindedness might reassure Sarah's parents as the relationship grows more serious. Only three months ago Miskowic met with Sharon, Sarah's mother and co-conservator, and Sue Walker, who is James's conservator, to discuss whether to allow unsupervised visits with James. The three surmised that such dates would probably involve nothing more than cuddling on the couch, but they wanted to talk as a group before granting the couple more privacy.
James has also expressed his wish to marry.
"I'd like to be engaged like other people," he says when I broach the subject. "Like when you have a family, a husband and a wife. They do that on the TV all the time. That's why I want to do that with her, because, you see, my other family, they're all in heaven."
He turns to George's mom. "Do you think that'd be okay if we get engaged?"
"Well, that depends," Sharon says gently. "Are you committed to each other?"
"What does 'committed' mean?"
"It means Sarah's very special to you, and she's the only one, and you, James, are very special to her, that you're the only man that she loves."
James mulls this over. And so do I.
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.
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.
Having freedom under the law won't necessarily help when it comes to finding a partner--ask any of your single friends. So it should come as no surprise that people with developmental disabilities often find that cultural prejudices and legal obstacles are the least of their problems. The more formidable challenge is finding and seizing the opportunity to chat up someone you might like.
Where do you start? "A common thing that came up when I worked in residential situations was when somebody liked somebody," remembers Beth Fondell. "If that other person didn't reciprocate, they would come to me and say, 'Make her like me; tell her to like me.' I'd say, 'Well, that isn't something I can make her do.'"
So what do you say? "Part of their problem is everyday conversation, just chitchatting," says Bobra Fyne, of the National Institute for People With Disabilities in New York. To teach such skills, Fyne has started a dating service of sorts, in which singles meet one another and play social games designed for their abilities. One activity involves Polaroid photos taped to a wall. People have to pick a picture, find the person, and discover three things they have in common with them.
The objective, Fyne explains, is to try "anything that gets people to talk. We'll have a dance," she continues, "and in the last hour we kind of help people hook up with one another. We yenta--a yenta is a Jewish word for matchmaker."
Fyne adds that of the 80-odd people currently participating, 70 to 80 percent of them had never had a date before. "I really wasn't prepared for somebody 50 years old who had never had a date," she says. "That was really overwhelmingly sad for me."
Here in the Twin Cities, Jonathan Kigner has for the past six or seven years published a mass mailing of personal ads by people with developmental disabilities, Personal Pages. "Most people don't have very many vehicles for meeting new people," says Kigner, who explains that staff often recite the ads to those who can't read. "And loneliness is a real problem among people with developmental disabilities."
Even some of the most fortunate couples--those who succeed at love and get married--often discover that society's care system is ill-equipped to help them. Of the three weddings Beth Fondell has attended among people with developmental disabilities, one ended in annulment, another in divorce. "The other couple is still together quite a ways down the road, but it's a struggle," she says. "The thing that has been a struggle for them is figuring out these 'cross benefits.' Because the support networks in place are not geared to think about a man and a woman with 'mental retardation' as husband and wife."
Karen Martinson's parents were wary when she told them she wanted to get married. She had met Bill Martinson at work in 1983, at the Minnesota Diverse-Die Industry, a nonprofit workplace for people with disabilities. They often bought each other lunch, but both were dating other people. So they remained friends for the time being.
"We had a crush on each other but we were too shy," says Karen, pulling up a chair at the kitchen table of the house she shares with Bill in the Longfellow neighborhood of Minneapolis. "I always thought our ex-boyfriend and -girlfriend knew we had something by the way we were looking at each other."
After those relationships fizzled, Bill and Karen began to talk on the phone to each other in 1985. Bill proposed to Karen on Valentine's Day of 1986, and she remembers him being so nervous that he got down on both knees instead of one, barely able to say the words. They decided to take it slow and move into their own apartment before getting married, which they could do without permission. Both Bill and Karen are adults, of course (Bill is 54 years old, Karen 39), but they are also their own guardians; their developmental disabilities are considered mild. (If this is any measure of their awareness, I can detect skeptical stares behind both sets of thick glasses whenever I ask a painfully obvious question like, 'How do you make a marriage work?')
Still, they had to slowly learn the skills of living on their own: Both received training in how to shop for groceries, fix meals, keep the place clean, budget, and open up a checking account. Bill is still learning to read.
"I talked to people and they would try to discourage us from getting married," says Karen. "They tried to say, 'It won't work out--you know, you've got to have responsibility to keep a house.'" Most of it was my parents. They were trying to tell me that Bill would take advantage of me--not in that way, but with money. We treat each other, though. We don't bug each other about money."
Even after the two had moved in and were managing on their own, Karen's parents were skeptical. "My mom didn't think it was a good idea for us to live together before we got married," says Karen. "She's like an old-fashioned person. I'm the baby of the family; I'm the only daughter. My brothers would tease me a lot and my mother would always take my side. I was spoiled. She did not want me to leave the house to move down here from Hibbing. But somehow the social worker convinced her to let me."
When I bring up the topic of the couple's sexual relationship, Karen blushes and falls silent. Bill admits that having sex would have been difficult in the group homes where they previously lived. And he says yes when I ask him if, once they finally got some privacy in their own apartment, they began to pursue a more intimate relationship. "If I got married again I would have waited," he adds.
When I ask why, he hesitates. "Because there are a lot of diseases out there."
"You know you're talking behind your hand again," Karen chides him. "Are you nervous?"
As it turned out, getting to know each other before exchanging rings allowed the two to discover and cultivate their common interests (football, baseball, puzzles). After a few years, they were married on August 8, 1992. ("Bill's birthday," says Karen, adding with a laugh that this makes the anniversary easier to remember.)
Such success under these circumstances is somewhat rare. But at every step along the way, friends, reluctant family members, and a swath of service providers helped the couple cope with the stresses of their new independence. Arc employee Jodie Atkinson founded an informal "couples group" in the early Nineties, and today she and her husband are still friends with the Martinsons.
Arc also had a grant program that helped Bill and Karen make the down payment on their house. "I was working with a person from Arc because I needed to work on some things," says Bill. "And I told her one of my dreams won't never come true. And she said, 'What is that?' And I told her. And she said, 'Well, you never know, Bill, because maybe that will come true.'"
Leading me to the back window, he shows me the garden that Karen's brother helps them tend, though it's buried under the snow in the wide backyard.
When I ask to see the wedding album, Karen disappears into the basement and emerges with a yellowing book. Suddenly, she exclaims, "Look at the vows that we took! It was in the back of the photo album! I thought I lost it!"
She unfolds the piece of paper, which reads, in part, "I'll share my thoughts, my feelings, my life with you."
Karen remembers now that she and Bill forgot their lines. They needed prompting from those around them to remember the words. They wrote the vows, and they meant them--they just needed a little help.