Of People of Power
We have a powerful person in our family, except he doesn’t know it. His name is Scott Clegg, the third child of my brother Mike and his wife Sue, born on July 9, 1973, with Down syndrome. At age three he also developed leukemia—a challenge to treat with the usual medications. But now he’s a happy forty; and because of Scott, great things have happened.
Mike and Sue lived close enough to University Hospitals to be able to take turns being with their little boy during his bout with leukemia, and realized out-of-town parents of sick children needed a place to stay and bond. Result: Mike founded the Ronald McDonald House in Cleveland.
Scott helped keep his teenaged brother in line. When the paper did a story on the family, Chris said: “I’ve seen kids at school do things to their bodies with drugs and alcohol that I could never do after watching my little brother fight so hard to live.”
Scott carried the Olympic torch through the Public Square before the 1984 Games in Los Angeles, raising a lot of money for Special Olympics.
Mike won the battle for an independent group home in a nice neighborhood where Scott now lives with three other handicapped people. It has become the model for others in Ohio.
Scott’s parents were stunned when he was born. They weren’t expecting a child who would never read a book or memorize a multiplication table. “Remember the piece by that ‘Sesame Street’ writer?” asks Mike. “You’ve been planning for nine months to go to Italy, but when your plane touches down, the pilot comes onto the intercom and says ‘Welcome to Holland’. You’re pissed, you’re not prepared, but then you realize Holland has tulips and windmills and isn’t all that bad.”
Raising a disabled child, Mike points out, you manage your expectations more realistically. Anything he does is a plus; you get excited. You don’t take things for granted; you applaud achievement. You reach out more to all kinds of people and end up embracing imperfection.
“Scotty is why I have so many different kinds of friends,” says his sister Tracey, “because to him everybody is the same, whether they’re old or young, fat or skinny.”
And he certainly has a talent for making people laugh. Some endearing stories: Scott had gained weight so he was told he couldn’t buy any wrestling comic books—a Saturday treat—if he kept sneaking snacks. One night Mike heard noises in the kitchen and found him in his pajamas reaching into the refrigerator. Looking up, he saw his father, closed the fridge door, put his arms straight out in front of him and sleepwalked back to his room.
Scott wanted to watch Happy Days instead of going to church Christmas Eve and his father was trying to get him into his blazer: “They’ll sing all those songs you like, and have candles and live animals,” noted Mike, “and you can say ‘Happy Birthday, Baby Jesus!’ ” “Oh, no,” said Scott with a groan. “Is He going to be there, too?”
Waiting for the Olympic torch to arrive in the Public Square, Scott led the 200 intellectually disabled people in the bleachers in a cheer for himself: “Give me an S!” (they yelled “S!”). “Give me a C!” (“C!”), and so on. Finally, “What’s it spell?” And nobody knew.
Scott went next door to visit neighbors, big tennis buffs, who were giving a dinner party that night. Everything was ready, the table set, the water poured. After he left, the hostess returned to the dining room to find a tennis ball floating in each glass.
Watching through a one-way glass window while Scott interviewed for a job, Mike saw the people around the table suddenly start laughing and loosening their ties. He’d answered a string of questions about things like where he’d gone to school, then stopped abruptly, commenting: “You know, I think I’ve given you entirely too much information.”
“Hey, Aunt, I’ve got bad news,” Scott told me. “Billy Smith died.” “I’m sorry to hear that,” I replied, “but I didn’t know Billy Smith.” “Well,” said Scott, “it’s too late!”
After a haircut, Scott said to the young receptionist at the shop, “You’re so cute I could kiss you!” Driving home, Mike told him that was inappropriate and he should apologize. So next time they went, he said to her: “I’m so sorry, so sorry.” She didn’t know what for until Mike explained. “Oh, that’s okay, Scott,” she said. “Don’t worry about it.” But he kept apologizing. “I’m really, really sorry—so how about lunch?”
His mother was in the hospital with a lung problem and Scott wanted to visit her. “Sure,” Mike agreed. “When do you want to go?” “How about next Saturday?” answered Scott. “I’ve got a very busy week.”
In fact a group called Pathways keeps him busy on weekdays; twice a month he takes tickets at Shaker Square Cinema; and he just "raced" for Our Lady of the Wayside, a group that offers services for 300 mentally and developmentally handicapped people, flashing V for Victory at the finish line.
On our last visit Jack and I joined the Cleggs at Benihana where Scott brought down the house doing a perfect imitation of a Japanese waiter—complete with bowing and ah-sos—which led the hibachi chef to remark: “You know, if there were more people like Scott in the world, it would be a better place.”
Scott Clegg is indeed a victor—a guy who, with his family, has made more of an impact on society than he will ever know.