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Disabled civil rights activist Lois Curtis dies at 55

As a young woman, Lois Curtis was imprisoned.

Curtis was not a criminal. She hadn’t even been accused of a crime. The only thing Curtis had done was be born with a disability in a society that did not value her rights.

When she was 11 years old, Curtis was sent to live at the Georgia Regional Hospital, an institution for people with disabilities. For the next 18 years Curtis was stuck at the hospital, even though her care team had determined that she could be supported effectively in the community. But the state of Georgia disagreed – at least they didn’t want to have to pay for the services necessary for her to succeed outside the institution.

Curtis continued to be held against her wishes until she met Sue Jamison, a civil rights attorney. “Get me out of here,” was Curtis’ only request.

This was in May 1995, and Jamison spent the next four years building and fighting a case on behalf of Curtis, another resident of the hospital, and all people with developmental disabilities. Eventually, the case went all the way to the Supreme Court. In 1999, the Supreme Court heard the L.C. v. Olmstead case and decided in favor of Curtis and her co-plaintiff.

The Olmstead decision was a landmark decision for people with disabilities. The court found that states must provide equitable funding and supports for people to live in their communities and move out of institutions if the person chose to do so and their care team agreed. Because of Curtis, millions of young people with disabilities like her have avoided imprisonment in an institution.

That taste of victory led Curtis to understand her own power as an advocate. After the Olmstead decision, Curtis moved out of the hospital and over the years, she lived in a variety of host homes and apartments. She became a talented artist and used her art to connect with people and spread her message of freedom for people with disabilities. She also traveled the country as a public speaker, sharing her story and encouraging others to stand up for their rights.

On Nov. 3, Curtis died in her own home as a result of pancreatic cancer. She is mourned by family and friends and disability advocates across the country.

Curtis’ death comes just as the Supreme Court is faced with another case that could significantly impact the civil rights of people of disabilities. Health and Hospital Corporation of Marion County v. Talevski raises the question of whether people with disabilities who receive Medicaid services and programs have the right to sue local and state governments if their rights are infringed.

Disability advocates hope that the case will be dropped and there will be no curtailing of the capacity for people with disabilities to sue when their rights are violated. The case is set to come before the Supreme Court this week.

We suspect Lois Curtis is looking down in eager anticipation that her work to ensure full civil rights for people with disabilities will not be undone.

Tara Kiene is president/CEO of Community Connections Inc.