WILMINGTON, NC – Kevin Farmer doesn’t want to be in inspiration to anyone.
“When people tell me that, I don’t want to be rude to them, but I’m just living my life,” he says.
Farmer lives in a small, sparsely furnished apartment in Wilmington close to his favorite coffee shop. He does an occasional deejay gig and, having been raised in the suburbs of New York, he loves the New York Yankees.
He is a 38-year-old man with above-average intelligence and a wicked wit. But he has to depend on others to help him through his day.
Farmer has cerebral palsy, leaving him unable to walk or perform many of the tasks most people take for granted. He was born several weeks premature on Nov. 20, 1971, weighing just over 4 pounds.
“Today that’s nothing, but it was a big deal then,” says his mother, Paula Hartman. “We couldn’t touch him for a week. He didn’t come home for over a month.”
Although he needs help for several hours each day, he treasures the level of independence he does have.
“Sure, I have to have somebody help me go to the bathroom and get in and out of bed, but other than that, I’m copasetic with the rest of you.”
Farmer majored in sociology at UNC Wilmington, “because I wanted to see what makes people tick, why people react the way they do to people with disabilities.”
A chance to educate others
One reason Farmer loves living in the community is that he can educate people about disability issues, and he does so with a sense of humor
Because he uses an electric wheelchair, people often assume he has a cognitive disability as well.
“Some people talk really loud,” he said, laughing. “I can’t walk but I can hear.”
But Farmer’s independence may be coming to an end. Because of the North Carolina state budget cuts, eligibility for Medicaid has been cut from 150 percent of the federal poverty level to 100 percent. Farmer’s income – disability and survivor’s benefits from his father, a disabled veteran who died of a service-related illness – is less than $15,000 a year, but he is being forced to pay about $2,000 a month (a so-called spend-down) to maintain his services. This leaves him about $250 to live on.
“Nobody can live on that,” he says.
Recently, a worker presented him with a bill while he was sitting at a coffee shop and told him it had to be paid in full that day or his services could be pulled.
Hartman thinks the whole thing smacks of extortion because if he’s late getting the money to his service provider, his home health aide might not show up. Without the services, Farmer will have to go into a nursing home, where he will have less freedom and few choices about his life.
And every month, that threat looms, and Farmer struggles to come up with the money.
Standing up for what’s right
Farmer has lived in this limbo for several months, but he is fighting.
“My parents raised me to be respectful, but I don’t take any shit,” he said.
He has called the New Hanover County Department of Social Services, but has found little help there.
“They have 200 cases,” he says. “They don’t have time to solve my problems. I think they don’t like me very much because I speak up for myself.”
Farmer has applied for a waiver that will allow him to keep his modest income and continue to live outside of an institution. But unless that approval comes soon, he could be forced into a nursing home.
He thought of getting a job and a job coach lined up several interviews, but none of the offices was accessible.
“I suggested maybe he could work as a greeter at Wal-Mart,” Hartman said. “But he said he doesn’t want to be the cripple at the door.”
“I don’t need to be on display, handing out stickers and telling people to have a nice day,” he said.
But it became a moot point because he learned getting any income would only make his situation worse.
“The more you make, the more you pay,” Hartman said. “You would have to be a multi-millionaire to survive without any benefits.”
Farmer will continue to fight to stay in the community and for a more just system for people who have disabilities.
“I’m just living my life,” he says.