ANNAPOLIS – Put him in an institution. He’ll be nothing but a vegetable.
That was the advice doctors gave Nancy and Lawrence Capone 42 years ago, shortly after they learned their fifth child, Ken, had cerebral palsy.
The doctors were only pushing the prevailing wisdom at the time, but the Capones “wouldn’t even hear of it,” said Ken’s half-brother, Steve Harrell. “There was no way Kenny was going in any institution.”
Four decades later, Ken Capone’s cerebral palsy has left him unable to walk or talk. The Prince George’s County man has such limited use of his arms that he uses a headstick both to operate his motorized wheelchair and type messages to others on a computer that sits on his wheelchair.
Despite those challenges, Capone will soon begin his fourth term as an intern concentrating on disability issues in the Maryland Senate. He has become such an influential advocate for those with disabilities that the Senate Education, Health and Environmental Affairs Committee has never rejected one of his recommendations.
Capone has helped pass laws like the “The Right to Be Informed,” which required the state to inform clients of community treatment options.
“Even at times when we were very, very restrained fiscally, he made such compelling cases” for legislation, said former Sen. Sharon Grosfeld, who Capone interned for during two legislative sessions.
With the legislature set to convene next month, Capone said he will continue to target one prize that has so far eluded him — persuading lawmakers to close Rosewood Center, the state’s troubled residential center for people with developmental disabilities.
“It’s a no-brainer for me,” Capone said. “I’m frustrated that the higher-ups can’t see that.”
Capone says that passion for advocacy — and for closing Rosewood — stems from what he terms a happy upbringing and the realization that others with a disability were not as lucky.
Capone grew in Prince George’s County, with four older half-siblings and a younger full sibling.
After Nancy Capone went back to work, older siblings Steve and Wendy alternated days watching Ken. And quickly, Steve said, their friends became Ken’s friends, too.
“Kenny’s always had that happy, positive attitude,” Steve said. “You just can’t help but love him.”
Afternoons with Steve meant hiking, fishing or horsing around: playing in the woods, climbing hills and racing down the street on Ken’s wheelchair, with Steve perched on the back.
“If my front wheel hit a rock, my chair would flip front ways,” Capone said. “My face met the pavement quite a few times. But boys get hurt.”
Days with Wendy meant eating ice cream and listening “to all the girl talk,” Capone said.
Capone said he “assumed growing up that everyone had a family life.” Then he found out a friend from school, Missy Perrott, lived at Great Oaks Center in Prince George’s County.
“She hated to go back after the school day was over,” Capone said. “I remember asking my parents why she was there.”
Capone eventually met others who had grown up in institutions, which set him on the path to advocacy. Seven years ago, he started working for the advocacy group The Arc of Maryland because he had a friend who worked there.
When he started, Capone was “very shy. He wanted to tag along and be a part of things, but he wouldn’t really be the leader,” said Cristine Marchand, executive director of The Arc. Even a few years later, during his first session at the State House, Capone said he still was nervous.
“I did not want to screw up,” he said.
But eventually Grosfeld, D-Montgomery, began giving Capone more responsibility. Capone, who received weekly assignments his first year in the Senate, then became more of an independent adviser on disability issues and started testifying on disability issues.
“I used to get intimidated when talking to legislators and elected officials,” Capone said. “Now, I’m confident in my ability.”
Others saw a transformation in Capone as well.
Marchand recalled one occasion when Capone was tracking down senators to co-sponsor a bill. “Then he came back with this huge list of co-sponsors,” both in the House and the Senate, she said.
Sarah Basehart, assistant director of The Arc, said Capone has evolved from “someone who didn’t know about the advocacy movement to someone who’s leading” it.
He “now runs the whole gamut of what a grassroots organizer does,” Basehart said.
And that is good news for Marylanders with a disability.
“Nothing is more powerful,” Marchand said, “than the person most affected telling their story and the impact” of legislation and government decisions.