When serving in Congress from 1982-94, U.S. Rep. Tim Penny helped pass the Americans with Disabilities Act. Arguably, he had as much of a personal connection to disability as any member of Congress.
“I have two younger brothers with disabilities,” said Penny in a telephone interview. “We’re a family of seven children. Our youngest brother, Troy, was born with hydrocephalus, which back in 1960 often was a fatal condition. But experimental surgery provided a shunt for him that would successfully drain his (excess brain) fluid for about five years.”
However, the shunt failed, and Troy went comatose for several weeks. When regaining consciousness, he suddenly had cognitive and physical disabilities.
Penny said, “When it was time for Troy to go to school, we began encountering larger societal problems because there wasn’t a place for him in the public school system. For a couple years, we had to shuttle him back and forth to Worthington (two hours away) to a large home for children.” The Penny family didn’t have health insurance.
About 1974, Penny’s other brother developed muscular dystrophy, and today, his 78-year-old mom cares for his two younger brothers in a fully accessible home. Troy is a 49-year-old wheelchair user and Joel is a 50-year-old, part-time newspaper editor.
Penny and his mother have discussed what will happen after his mother’s death. “I can’t say (my mom and I) have come to a hundred percent agreement, but our goal is to do our best to allow (my brothers) to continue living where they are, and to get whatever support we can for them.”
About four years ago, Penny had another firsthand experience with disability when his wife Barb developed pancreatic cancer and passed away 15 months later.
He offered advice for people recently learning of a loved one acquiring a disability: “Just love them the same,” he said. “Do everything you can to keep activities and routines the same for them. Do everything to allow them to live normally. With Troy, we tease him as much as we tease one another. We don’t tease about his disability, of course. We would never do that. But about silly things he says or does. He likes to be the center of attention. We joke around with him. I don’t think he ever feels he has a disability, mainly because of the way we treat him.”