Kicking out a karate move or bench-pressing 300 pounds used to be no problem for Tim Toerber. But after a car accident in 1976, he can only walk a few feet on his own. His souvenirs include arthritis, fused bones in his spinal column and emphysema.
“My disability was a complete turnaround for me,” Toerber says. He now spends his spare time as an advocacy volunteer at the Progress Center for Independent Living, which provides services, advocacy and support for people with disabilities.
“When I see the disabled being mistreated, now they raise my ire and I’m ready,” he says. “I’m tired of people having a nonchalant attitude.”
One of his missions is making Forest Park”and the rest of Chicagoland”fully accessible to people with disabilities. His red scooter doesn’t fit in narrow strips of sidewalk, up stairs or through heavy doors. So he’ll call people on it, asking that they build a wheelchair ramp, stop blocking the sidewalk or replace the heavy doors.
Advocacy is just one of the functions of the Progress Center for Independent Living, a Forest Park-based non-profit that also provides services and support for people with disabilities. People with disabilities run the group, which reaches out to all ages and any disabilities. “It’s a peer-based system,” says Diane Coleman, the executive director.
Programs are geared towards the idea of “independent living,” that people with disabilities deserve the same freedoms and choices as people without disabilities. “We want to be treated like anybody else. It’s just common sense,” says Larry Biondi, an advocacy coordinator. “But the problem with common sense is it’s not all that common.”
Since public transportation can help people with disabilities live independently, Doug Horsley at the Progress Center runs a program that teaches people how to navigate the Chicago transit on a wheelchair. Wheelchair users learn how to use “gap fillers” between the train and the platform to embark and disembark on CTA trains and how to board bus lifts.
“You will be surprised at how the public responds,” Horsley says. “They get up, they move.” PACE busses are especially disability-friendly, the people at the Progress Center agree. Patty Martin, who has epilepsy, recounts one PACE driver, known by her 6-year-old daughter as the “silly bus driver,” who always talks with the two of them and drops them off right where they need to be, even if it’s out of his way.
The center also gives referrals for personal assistants who help with cooking, cleaning, bathing, dressing, laundry and shopping, so that people with disabilities can live on their own. Programs that teach deaf and hearing people how to use telecommunication devices to communicate with each other and Hispanic outreach programs round out the services. Last year, the center gave intensive, one-on-one services to 466 people around the Chicago area and served more than 4,000 people with their information and referral services. They also help people get out of nursing homes and live independently.
The center provides meeting space for other grassroots disability groups, such as the Coalition of Citizens with Disabilities in Illinois (CCDI), Community Health Action Network to Gain advances for Epilepsy (CHANGE) and “Not Dead Yet,” an anti-euthanasia group.
Martin, who organized CHANGE many years ago, says the support group gave her strength and some special friends. “It’s like a family,” she says.
A long way to go
The people at the Progress Center are fighting against attitudes, which are hard to measure or to see. But when they feel them, attitudes can be ugly.
They recounted a story of one Progress Center wheelchair user who was forced to use the street when the snow on the sidewalks hadn’t been shoveled. A driver honked his horn and shouted at the person to get in a nursing home, expletives deleted.
“I think people have been raised to feel that in a better world, we wouldn’t exist,” Toerber says.
The group recounted their frustration when people pat them on the head or feel sorry for them but aren’t willing to go the extra mile. It infuriates Mark Karner when waiters or waitresses ask his family or friends “what does he want?” instead of asking him.
“The thing you’re taught to feel is shame,” says Coleman. She felt that for the first 30 years that she lived in a wheelchair.
But she was inspired when she got involved with the disabled community. Now, she wouldn’t be any other way. “Would I take the cure? I wouldn’t [now]. For my first 30 years, I probably would have,” she admits. Being disabled is seen as a negative identity, but it should be a positive one, she says.
Karner, who has been disabled since the age of 2, says that having a disability has taught him a lot about life. “I got the benefits of a lot of experiences I would not have had, I learned about discrimination at an early age,” he said.
As Larry Biondi says, “I am who I am because of my disability, however my disability does not define me.”
Out of the nursing home
One of the Progress Center’s most important initiatives is getting people out of nursing homes and into their own homes. It’s organized by Trish Hardy, who used the Progress Center’s Services to pull herself out of a nursing home.
Hardy was pulled away from her job teaching third and fourth graders and ended up in the hospital and then in a nursing home. Between spells of excruciating pain, she’d black out, fall down and find herself unable to see.
“All of a sudden, my body decided, ‘I’m going to be allergic to you,'” she recalls. She spent months in hospitals and then in nursing homes, fighting for her life. At one point, she heard her own flatline.
“If you don’t walk like everyone else, don’t move like everyone else, they want to put you in a box and hide you away,” Hardy says.
As soon as she could sit up for 15 minutes, she knew she wanted out of that nursing home. But that wasn’t easy. In a nursing home, you lose everything you own and become a ward of the state, Hardy says.
In that situation, “you’re trapped,” according to Coleman.
They told Hardy that she had to accept it. She wouldn’t. “I needed my life back,” she says.
She made a call to the Progress Center early on, asking for help to get out of the nursing home. The people at the nursing home called her a conspirator and hid her phone. “The best part, I’m telling you, was that phone call,” she says. It gave her hope.
Her determination earned her a following, from nurses and other patients alike. “They all came to my room,” she remembers. They wanted to catch a few of her encouraging thoughts. “Are you getting out of the nursing home?” they asked. “I told them every day, I am.”
Now, she’s out of the nursing home, and she has a job at the Progress Center helping other people do the same thing. “If you say it’s hard, then you’re not ready,” she says. “It’s something that has to be done. You don’t label it, you just do it.”
As she said in a poem, her work at the Progress Center is “more than a job. I’m taking my turn.”
The Progress Center for Independent Living, at 7521 Madison St. in Forest Park, is online at www.progresscil.org. Call 209-1500 for more information.