Matthew Passen has severe cerebral palsy. He can’t move around much on his own.
For the last two months, his electric wheelchair has been broken.
That means he can’t go outside, or get in and out of bed, or get on the toilet by himself anymore. His electric wheelchair is his lifeline to the world.
“It’s his way of getting around,” said Teresa Collins, who has been Passen’s caretaker since 1996.
Passen’s cerebral palsy means it can be hard to understand him when he speaks, but Collins doesn’t miss a word. She also understands how important his wheelchair is—lifting Passen every day is wearing out her back.
“It’s frustrating to me,” she said. “And it’s so frustrating to him that he has these mental breakdowns. He had a mental breakdown on Sunday past. He tried to hurt himself.”
Passen lives in an apartment in Evanston, in a building for people with physical disabilities run by a group called Over the Rainbow Association. Besides its low counters and power outlets halfway up the wall, the place is a pretty standard one bedroom.
But for Passen to even get around in here, Collins has had to become a sort of DIY wheelchair technician. The crumbling plastic arms of the wheelchair are wrapped in duct tape.
But the real problem is the footrest. It’s worn away completely. While they wait for a repair, Collin’s has rigged a replacement by running intertwined strands of wire and telephone cord between the chair’s legs.
“It’s to hold the legs together so they won’t fly out,” she said. “I bought some Gorilla Glue, too.”
This is not what is supposed to be happening. Normally, Passen could have his chair repaired by an actual wheelchair technician through his state Medicaid benefits.
But the state budget impasse has made that impossible.
The company that Passen usually works with, WS&S Medical, hasn’t come out lately—it says the state is no longer paying it for repairs on time.
WS&S technician David Hart says it’s not that he doesn’t want to do it—at this point, he can’t even buy many of the parts he needs.
“Two of our manufacturers have put us on credit hold,” he said. “I could not even order a part.”
Candace Huber is Vice President of Property Management for Over the Rainbow Association. She says about 40 of the 200 people that the group provides housing for have broken wheelchairs that need to be fixed.
“What makes everyone on the staff angry is how dependent our tenants are on the system to work properly,” she said. “And now that it’s not—they have almost no recourse.”
Take Michael Williams. He lives down the hall from Passen. His chair is stuck in a sort of permanent recline, forcing him to lean back. It’s been stuck like that for six months.
“I have pain in my lower back,” Williams said. “I have to use a couch cushion to be able to sit upright.”
Williams was known as “Massive Mike” when he was a basketball star at Bradley University in Peoria. He even played in the NBA for a while.
But Williams was caught in the crossfire of a shooting in 2009. He’s now paralyzed from the waist down.
Despite his injury, Williams tries to workout as much as he can. He spends a lot of time lifting weights by the window in his apartment. He was even a candidate for bionic legs at one point, although that hasn’t worked out yet.
For now, he’s stuck in a broken wheelchair. And he says people who aren’t disabled can’t understand how important it is for that chair to work right.
“All they have to do is come out and fix it and the problem is over,” he said. “But they can’t come out, because these guys in Springfield are holding things up.”
Miles Bryan is a producer and reporter for WBEZ. He’s on twitter at @miles__bryan