By Chris Parker
By Jesse Marx
By John Baichtal
By Olivia LaVecchia
By Jesse Marx
By Olivia LaVecchia
By Tatiana Craine
By Judy Keen
The extreme example, of course, is actor Christopher Reeve, who suffered a spinal-cord injury while horseback riding. Reeve is the alpha male of the disability movement. He has helped raise millions of dollars for spinal-cord research as chairman of the board for the American Paralysis Association; started the Christopher Reeve Foundation; even returned to the stage and screen. He is also blessed with round-the-clock nursing care and the best equipment money can buy, including, according to press accounts, a $100,000 exercise bike.
But Minneapolis psychologist Lynn Lockhart says the reality for most disabled people is far grimmer. "It's easy for him to smile because he's not dependent on the state to pay for [personal-care attendants] and he doesn't have to rely on Metro Mobility," Lockhart, who is blind, says of Reeve.
Lockhart notes that a certain amount of psychological turbulence--anger, resentment, self-pity--is inevitable with any serious accident or sudden illness. "A feeling of powerless rage is part of what happens with a person coping with a disability," she says. (Or, as Wesley Snipes's character observes in The Waterdance, a 1992 film about three men struggling with their spinal-cord injuries: "Even a quad needs to slug a man sometimes.")
No wonder. Between transportation problems, the difficulty of finding accessible, affordable housing, and the lack of reliable home care, it's not hard to imagine how a person can literally be driven mad. For instance, because of his isolation and poverty, Marco is completely dependent on state-subsidized personal-care attendants (PCAs) to get him through the day. It is hard, inglorious work, and the pay is low--generally eight to nine dollars an hour. Not surprisingly, there's a chronic shortage of reliable attendants. "We have a PCA shortage right now," says Eva Hansen, an individual advocate with the Metropolitan Center for Independent Living. "For the amount of money they're making, they surely could go to McDonald's and work."
Mike Dreier, who runs a PCA company called Minnesota Independent Living Services and is himself a quadriplegic, says he'd hire 15 more people right now if he could find them. "It's been exacerbated by the economy, but it's always been tenuous," says Dreier. "You're always on that bubble there."
In Marco's case, the bubble keeps popping. Either his personal-care attendants don't show up or he drives them away by being abusive. And when his care falls through, life comes to a halt. "It means that he might not receive assistance in going to bed at night," says Sindy Mau, an ombudsman with the nonprofit Advocacy Center for Long-Term Care who has worked on Marco's case. "It means that he might not receive assistance getting up in the morning, or going to doctors' appointments, or going to an activity that's been planned. It means almost every detail of his day-to-day life is negatively affected by the shortage of staffing."
Earlier this month Renada, Marco's primary personal-care attendant, walked out after a dispute over how many hours of work she'd be paid for. (Marco is entitled to 12 hours of state-sponsored home care a day; he can divvy up the hours any way he chooses.) Another attendant replaced her, but Marco worries that the tenuous situation will collapse, which would force him back into the hospital. According to police records, since moving into the apartment in 1998, Marco has sought assistance from officers on more than 100 occasions, usually for health problems.
Some handicapped people have enough money to purchase immunity from the inadequacies of the publicly funded support system. They can hire and pay their own attendants, purchase customized, wheelchair-friendly vans. Most people with spinal-cord injuries, laid economically low by overwhelming medical bills, have to grit their teeth and endure the daily degradations. And then there are the ones like Marco, who become embittered and lash out in anger.
Four years ago when Marco was marooned in a Chicago nursing home, he assaulted a nurse. The way he tells the tale, he was provoked into taking drastic measures when the medical staff refused to provide him with sufficient pain medication. "I'm sweating, I'm pale, I'm shivering," he recalls. "I'm having withdrawal." He managed to persuade a sympathetic health aide to put a can of shaving cream inside a pillowcase and tie it to his arm, and went in search of the nursing supervisor. When she refused to up his dosage, he pressed the issue. "She said, 'Hey, it's not my problem, I'm off in five minutes.' I said, 'I'm gonna ask you one more time. You see I'm sick. It's obvious that I'm sweating. Call the doctor.'" When the nurse again refused to help, Marco says, he cracked her over the head with the can of shaving cream. "She looked at me for a second, and I said, 'How does pain feel?' And I just watched her knees buckle and she hit the ground. They took her out in an ambulance. She needed stitches in her head."
Marco recounts the incident in a relentless monotone, as if he were enumerating items on a menu. He says the police were called but no charges were pressed. Instead, the episode marked his first stay in a psychiatric ward.