Cofounder, Paraquad Inc. and the Starkloff Disability Institute
By Jeannette Batz Cooperman
Photograph by Mark Gilliland
He used to race sports cars, had a little bug-eyed Austin Healy Sprite. “I’d raced it that afternoon,” he recalls, “in Washington, Mo., then we went to a swimming party at a friend’s farm out by the old Daniel Boone Home. It was a Sunday night, and I remember my date, Patty, was mad at me because I was late picking her up. We weren’t drinking, either one of us—people always assume we were—and we left the party fairly early because I had to go to work the next morning at National Lead.”
Starkloff was 21, just back from the Marine Corps and taking night courses in business at Saint Louis University. The St. Charles police recorded the accident just after 11 p.m.
“I was going around a corner, and I’d taken the roll bar off in case my date wanted the top up. I misread the road in the moonlight, thought it went straight when it curved. I overcorrected, and the car caught on the edge of the road and flipped over. Patty was thrown clear.”
Starkloff, 6-foot-5, was pinned by the steering wheel.
“A friend of ours was following; he saw it happen and pulled over. Patty was hysterical. Jim said, ‘Where’s Max?’ and I tried to answer, but no sound came out—I’d broken my neck. When Jim finally saw me, he lifted the car off me all by himself. To this day he does not remember doing it.”
“Back then, they took what were essentially ice tongs and drilled them into your head to keep your spinal cord straight, then rotated you like a rotisserie. My mother was sitting beside me one day, and I said, ‘I guess I have to start getting serious, don’t I?’ and she said, ‘Yes, you do.’
“After four years of her trying to take care of me at home, we realized I had to go to a nursing home. I was scared stiff. My image was that I would never wear pants again. We found this place in Eureka run by the Franciscan brothers, St. Joseph Hill, and I remember Brother Dismas, this little bitty guy, saying to me on the first day, ‘You’re not going to become our pet. We had another man who was a quad, and he became our pet.’ I was furious. They were condescending about everything. The minute you become disabled, people talk louder to you.
“On Sundays, visitors would come. Most of my friends were in college or out of town; their lives were going on. So I used to go outside with a book and sit behind a tree, because I wanted to see people, but I was too embarrassed for them to see me. If they did see me, I always wanted to lie about why I was there, say, ‘Oh, I’m just visiting.’
“It would be exciting to hear about my friends’ meeting someone, falling in love, getting married, going to grad school. I wasn’t jealous—but I felt very alone. I used to have fantasies about girls, jobs, what I could do. My mother’s friend tried to get me a job selling insurance, but I was terrible at it.”
One of the brothers taught Starkloff to paint in oils, and he found himself, brush clenched between his teeth, caught up in the passionate fury of the German Expressionists. He read Kierkegaard and Camus. He fell in love with Stravinsky and Beethoven. And then he fell in love with Colleen Kelly, a young physical therapist he met at the nursing home.
They married, adopted three children and began a lifelong fight for disability rights, founding Paraquad together and achieving one victory after another: statewide legislation for curb cuts, disabled parking, public-building access, wheelchair lifts on public buses and a million changes to make independent living more possible. Max served on a presidential commission and holds two honorary doctorates—but he’s still mortified that he flunked out of SLU High in 1954. “Education gives you confidence,” he says, “an ability to discuss things a certain way.
“Independence,” he has explained—to politicians, judges, CEOs, U.S. presidents, Japanese delegations, Afghan citizens injured by shrapnel—“is the ability to make choices. Someone has to cut up my food, but I can control when I eat, and I can speak out if something is not done right.” He pauses. “People are patronizing because they’re scared: Disability is something that very clearly could happen to them. Here I was, this macho former Marine ... When I joined a conversation, men would change the subject from politics to, ‘Where did you get your wheelchair?’” He grins. “My high-school friends stayed entirely natural, though. If they offer to hold a drink for me and spill it down my shirt, they don’t care—‘It’s your shirt, bud!’
“From strangers, the comment is always ‘How can you live this way?’ This is sort of corny, but I think we rise to the occasion. We all have more strength than we realize—and more ability to shift where we are going.” He shrugs. “The direction I was going wasn’t a bad one, but it wasn’t going to be anything earth-shaking; I probably would’ve wound up a paint salesman at National Lead for 30 years. And what I do now, I love.”
