From the time she was 12 years old, Lois Curtis spent most of her teen and adult years in state-run institutions for people with disabilities.
After her repeated requests to live in the community were denied, she and another woman sued the state of Georgia in 1995. They won, the state appealed, and the case wound up in the U.S. Supreme Court.
The court's landmark decision declared that unnecessary institutionalization amounts to segregation and violated the Americans with Disabilities Act. The case has had nationwide implications, prompting Illinois and other states to re-evaluate how they support those with disabilities.
"Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life," the court wrote.
Curtis, 38, who is developmentally disabled, is now a budding artist and continues to push for disability rights. She is preparing for her first art show, which will feature her pastel and acrylic portraits of women.
"She's an incredible person," said her employment coach, Jessica Long. "She's just full of life and full of joy."
Curtis will visit Springfield this week to take part in the Freedom Ride by the Campaign for Real Choice in Illinois, which stopped in Urbana Tuesday morning. About 30 people are on a four-day, 700-mile tour to push for an end to institutionalization of seniors and the disabled.
The Freedom Ride ends Thursday in Springfield, where advocates will urge legislators to pass the Community First Act. It would compel the state to spend money on support services allowing the disabled to live in their communities, rather than institutions or large group homes.
Barbara Pritchard of Urbana, who initiated the Freedom Ride with her husband, Lester, said research shows people with disabilities do much better when they're integrated into a social environment. Living alone or in small groups, with access to nursing care when needed, gives them privacy and a chance to be "part of a neighborhood."
"People with disabilities should be given the same opportunities to enjoy the same rights as any other citizen," she said. "There is a more effective alternative to large institutions and nursing homes."
Lester Pritchard is chairman of the Illinois Council on Developmental Disabilities, and Barbara Pritchard is former director of Persons Assuming Control of Their Environment, in Urbana.
Among the speakers was Bill Drake of Danville, who moved into his own apartment nearly five years ago. He worked with the Community Reintegration Program run by the independent living center Persons Assuming Control of their Environment, which has "liberated" 90 consumers in all, said coordinator Jack Delzell.
After a massive heart attack 10 years ago, Drake spent five months in intensive care and seven years in a nursing home. He admitted that moving out was "scary, very scary" at first, but "it's a great feeling once you get out on your own." He said both he and the community benefit, because he's now "a consumer, rather than a user."
From her home in Georgia, Curtis said it's unfair to force people to live in institutions if "they don't need to be there."
After the Supreme Court decision, Curtis was eager to leave the sheltered workshop where she'd been employed. Through a federal support program called Jobs for All, she landed a job at Target. But she soon found it wasn't right for her and decided to pursue her passion – art.
The federal program provided money to buy art supplies and brochures to get her business off the ground. She's sold some paintings and had her work in a number of shows.
"I love it," she said. "I'm doing my art pictures and I'm living in the community."
She's no longer in an institution, living now in a group home, but still hopes for a place of her own.
"It's better than where she was, but it's still not perfect. We still need some systems to change," Long said. "We have to make sure that people have the right to follow their dreams and contribute to society."