July 2, 1999
Meet Jay Turnbull.
He was born with retardation and autism. As he matured, new problems entered the mix. Depressed, he wouldn't get out of bed some days. Obsessed, he'd shut doors over and over.
At 19, Jay had a half-time job in a sheltered workshop for people with disabilities. But he wasn't making it.
Jay's parents have six university degrees. They're experts in addressing the problems of kids like Jay. But they, too, were failing. Then, one day, a friend said, "No matter how far down the road you go, if it's the wrong road, turn around."
They heard that, and they took off with Jay down an untraveled road.
This was 1987, the year Ann and Rud Turnbull were scared every time the phone rang because it might mean Jay was in trouble. This was the year they left behind the professional services and sheltered workshops furnished for kids like theirs and started to invent a world around their son.
It's not a perfect arrangement. But the Turnbulls, co-directors of the Beach Center on Families and Disability at the University of Kansas, have made for Jay a world that meets him more than halfway. It doesn't shrink from him, as it often does from those who are euphemistically termed "special people."
In Jay's world, there are friends who understand his behavior. They've been engineered into his life.
Jay loves music. So the Turnbulls sought and found a friendship facilitator, Alice Darrow, in the KU music therapy department. They call her a "door-opener," and the KU faculty member connects Jay to people interested in music and therapy.
Friendships can't be one-sided of course. So Jay has been tutored to do the small things - such as communicating daily by e-mail - that sustain friendship. Strangely enough, Jay's autism has proved useful here. Jay memorizes song lyrics impeccably. So a current music therapy student at KU, Mike Brownell, came up with a sensible format for communicating to Jay instructions on how to be a friend: through song.
The creation of a world around Jay extends to every realm. The Turnbulls bought a three-bedroom home on which Jay pays the mortgage. He has two roommates, each of whom provides 12 to 15 hours of personal support a week to Jay. That helps when Jay gets manic, depressed or obsessed.
Jay's most difficult behavior is his refusal to get up on mornings when he's depressed and anxious. So he has a "morning coach" who comes three days a week to give rewards and enforce penalties depending on Jay's eagerness to rise and shine.
Jay holds a part-time job at the Beach Center as a clerical aide. A "job coach" supervises him. As a worker, his problems are inconsistency, repetitive language use and fixations. But his co-workers also describe him as a healer and a morale booster, the Turnbulls write.
Jay's life program is intricately thought out. It involves daily visits to places where people have been told his name, his story and what to expect. It extends right down to a card that he keeps in his wallet, which tells people who've never met Jay that he needs help filling out checks, that he loves music, that he dislikes big hugs and hard handshakes.
It's all pretty intense. As the Turnbulls say in the keynote address they'll deliver at an autism conference in Kansas City on July 6: "Creating comprehensive supports 24 hours a day, seven days a week, 52 weeks a year is a daunting task."
Prescription drugs are part of that support. "The bottom line is that on a 1 to 10 scale, his environmental support is a 15," the Turnbulls write. "We are convinced that we have a tremendous amount yet to learn about JT's biochemical functioning."
The Turnbull's dream for Jay and other people like him is, they believe, revolutionary. People with disabilities need a life that possesses most of the same elements and rhythms enjoyed by people without disabilities.
What will that require of the rest of us? Love, I think.
The Turnbulls have shown the way.
Column by Roger Martin