By Ray Downs
By Lindsay Toler
By Danny Wicentowski
By Lindsay Toler
By RFT Staff
By Lindsay Toler
By Allison Babka
By Lindsay Toler
Five years ago, Charlene Day had to be institutionalized. Dwarfed since birth, with arms and legs a third as long as the world expects and a narrowing spine pressing against her nerves, she had lost her ability to walk, use the toilet or get herself out of her wheelchair. Her muscles clenched with spasms; her brain stormed with seizures, depressions, bursts of fear and fury. The only option anyone could imagine for her was a nursing home. She was 33 years old.
At the home, life was a blur of drugs, braunschweiger and bingo. "They used Ativan (an anti-anxiety, anti-seizure drug) like water; it was the answer to every problem," she groans. "And the food! One night they were serving braunschweiger sandwiches and there was white fuzz on them, and the cook tried to tell me it was built-in mayonnaise. I said, 'I'm disabled, not stupid.'"
The worst of it was, she remembered freedom, remembered "riding the Bi-State bus to the YMCA, Union Station, the card shops. Pete, my friend who taught me about sports cards, he's in a wheelchair, and he got bored one day and took the MetroLink from one end to another, learned all the stops. We'd go everywhere." Now, the day's big interruption was recreation hour, "Bingo or trivia. It was OK," offers Day, her voice polite. "But it was not the way I wanted to live my life."
She tried to run away but only made it as far as the street. They sent her to a psychiatric ward, but when she described how she'd been treated, the home's psychiatrist showed up and said she was making it up. "I told him I had God as my witness," she says. "Then they sent me somewhere worse (a Midtown home that has since been closed). There were spiderwebs on the air conditioners, people were pouring down with sweat, and there were flies all over the food." Allowed to go outside, Day slammed the joystick on her motorized wheelchair and escaped down the sidewalk. Two hours later, police found her on the next block.
After two more trips to the psych ward and an awkward stay at her mother's inaccessible house, Day called Paraquad, one of the state's 21 independent-living centers. They helped her move into the Boulevard Apartments, designed to support people with disabilities. Nobody else thought she could make it living alone -- and for the first year, she proved them right with panicked daily trips to the emergency room and an attitude so defensive she'd smash her wheelchair into a brick wall rather than take help.
When the apartment manager started talking eviction, Duane Gruis, one of Paraquad's independent-living specialists, rolled his wheelchair into Day's tiny apartment and calmly began to teach her how to manage her frustration, modulate her anger and interact more "appropriately" (a word they now use to tease each other). Gruis gradually learned about hurts Day had never been able to voice: old instructions like "People your size shouldn't speak up -- something might happen to you"; care that manhandled the last vestige of control away from her. "If they just would've let me go off by myself and calm down, instead of grabbing me and taking me out of my chair," she says now. "I wanted to tell them that, but I couldn't express it. Duane helped me understand why I blew up."
Day has just signed her third lease, with no static. A personal-care attendant comes for five hours in the morning, three in the evening and three on weekends. As for the rest of the time, "I wear diapers," she shrugs, unfazed. "In the home, I was having bladder infections from them not cleaning me, and I was on 12 different medications and sleeping all day long. Now I just take a few. I go to the library, do research on being a self-advocate. I go to the card shops and visit my family; I go to Tom's Bar and Grill, and the 34 Club -- they've got a jukebox with Marvin Gaye." Her next goal is to "support myself, run my own transportation business."
Above the compressed body she's worked so hard to manage, her blue-green eyes are as bright and fluid as the ocean: "I have a lot of dreams."
Five years ago, moving Charlene Day into the community seemed ridiculous and criminally irresponsible. Today, not moving Charlene Day into the community would be grounds for a lawsuit.
The shorthand for the new imperative is "Olmstead," referring to a powerful U.S. Supreme Court decision rendered last June in Olmstead vs. L.C., which removed much of the wiggle room states had insinuated into the Americans with Disabilities Act. In the lawsuit, two women with mild mental retardation and accompanying psychological disorders were institutionalized for years, even though treatment professionals pronounced them ready for community-based programs. The U.S. Court of Appeals, 11th Circuit, branded this "unnecessary institutional segregation" and, when Georgia pleaded poverty, sharply reminded state officials that community services would have been cheaper in the long run.
The Supreme Court upheld this ruling, noting that even if it had cost more to place the women in the community, that cost was irrelevant. In accordance with the Olmstead decision, unless states can show that moving someone into the community would jeopardize existing programming for others with disabilities, they are expected to reallocate -- or beg from their legislatures -- until they can pay the bill. As long as the treating professionals say someone can thrive in the community, and the person does not oppose this, the necessary services must be made available as soon as possible.