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Disability Advocates Gather to Learn About Their Rights

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A gathering in Chapel Hill focused on helping people with disabilities advocate for themselves. And attendees got inspiration from one of the disability community’s most famous self-advocates.

By Rose Hoban

In the early ’90s, Kim Bee was working as a job coach for Lois Curtis, a young woman in Georgia with an intellectual disability. At the time, Curtis was living in a group home for people with disabilities and she was unhappy.

“It seems to be she wasn’t being heard; people weren’t paying attention to what she wanted out of life,” Bee remembered. “She was working hardest to do the best she could.”

Lois Curtis was one of the two plaintiffs who filed the landmark Olmstead case, in which the Supreme Court reaffirmed the rights of people with disabilities to live in settings integrated into their communities.

Lois Curtis was one of two plaintiffs who filed the landmark Olmstead case, in which the Supreme Court reaffirmed the rights of people with disabilities to live in settings integrated into their communities. Photo credit: Rose Hoban

Then one day, Curtis disappeared. Bee said she later heard Curtis was reinstitutionalized at Georgia Regional Hospital because of problems at the group home. It wasn’t the first time Curtis had been in an institution and it wouldn’t be the last.

Bee never forgot Curtis.

Years later, in 1999, Bee heard about a court case, L.C. and E.W. versus Olmstead, that was making its way to the Supreme Court. Two women from Georgia were suing the state because they wanted to live in the community, but Georgia officials refused to allow them to leave the institution they were living in.

When Bee learned the L.C. in the Olmstead case was Lois Curtis, she wasn’t surprised.

“She’s quite a person,” Bee said. Lois Curtis, sitting beside her, nodded.

The two women were guests at a gathering for people with disabilities, their family members, advocates and people who work with them held Wednesday at UNC’s Friday Center in Chapel Hill. The one-day conference was organized by Disability Rights North Carolina to help people learn how to advocate for the rights of those with disabilities.

Vicki Smith, head of Disability Rights North Carolina, noted that Congress has passed many laws protecting the rights of people with disabilities, notably the Americans with Disabilities Act (1990) and the Individuals with Disabilities Education Act (1990). But Smith said that even when legislators put high-minded ideas into law, it’s up to people outside the legislative system to make sure those laws are put into action.

“It’s left to the disability-rights movement to push to enforce the policy statements of Congress and the Supreme Court,” she said, praising Curtis. “Lois is a person with a disability who had the courage to demand that the mandate of community integration written into the ADA be honored.”

Preserving basic rights

One of the most fundamental rights is that of voting, according to Disability Rights attorney Mercedes Restucha-Klem. But under the new voter ID law passed last year by the General Assembly, exercising that right could become more cumbersome for some people with disabilities.

Disability Rights NC head Vicki Smith said about 800 clients around the state told them they needed to do more training for advocates.

Disability Rights NC head Vicki Smith said about 800 clients from around the state told them they needed to do more training for advocates. Photo credit: Rose Hoban

Restucha-Klem explained that, for example, the new law prohibits a worker from a nursing home or adult-care home from helping a resident vote. Facility workers can no longer even witness a resident’s signature on an absentee ballot.

“So say I’m in the nursing home and I can’t get to vote outside and I don’t have family members near me. Then no one can help me?” asked D. Jones, a woman with a disability who also serves on the Disability Rights NC board.

Restucha-Klem explained that each county is supposed to create multi-partisan teams consisting of a few volunteers who will find such people in nursing homes and other institutions and help them vote. But she said many counties are having difficulty finding the volunteers to serve on these teams.

“If you’re in a socially isolated position, the people you know and trust are going to be the people in the facility that you live in,” said Evelyn Howe from Mecklenburg County, who has a family member with a disability. “It seems to me to disenfranchise those people.”

“It is disenfranchising people,” Restucha-Klem responded.

Howe said that working on multi-partisan teams might be good activities for peer-support specialists or family advocates.

Training advocates

Smith said the idea for the conference arose when Disability Rights NC surveyed more than 800 people they worked with over the course of a year.

“We heard from at least two or three people from each county … and the majority said you need to have a disability-rights conference.” The choice of topics, she said, was driven by demand. Aside from voting rights, sessions ranged from finding helpful resources for people with disabilities to discipline in special-education classrooms to overcoming the barriers facing people with disabilities who want to work.

Red Hat, a painting by Lois Curtis

Red Hat, a painting by Lois Curtis

“Money is always a question,” said DRNC attorney Lisa Grafstein. “One thing we think about is the barriers. People fear losing [Social Security and disability payments], Medicaid. They’re wondering, ‘How will I survive as I work my way into the workforce?'”

She said many people with disabilities worry that if they give up disability or Social Security benefits and then lose their jobs, it could be “catastrophic.”

“They’re not irrational fears.”

But throughout the day, the conversations, and the guests, kept circling back to Lois Curtis, who spent much of her time sitting at a table in the main conference hall laughing and chatting with admirers and selling her artwork. Curtis has become an “outsider” artist of note, who, in 2011, presented President Barack Obama with a self-portrait.

It’s a long way from the decade and more she spent living in several of Georgia’s large hospitals.

“She wanted to get out; she wanted a real life, like you and I,” Bee said.

Now Curtis lives in a three-bedroom house in Stone Mountain, Ga., where she has a studio for her painting and drawing, and she makes her living from her art. She’s been invited to show her art at a venue in New York City.

Curtis gets support from a team of friends and volunteers, including Bee, who help out with things such as paying bills and who travel with her to speaking engagements like the one in Chapel Hill.

“I’m having a good time making a ton of art,” Curtis said. “I’m enjoying my new home.”

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