The Life and Legacy of Lois Curtis

Photo of Lois Curtis, a Black woman with dark skin and short Afro smiling giddily as she sits in a room among friends.
Photo courtesy of NPR news

We regretfully share the news of the death of a Black disabled icon, Lois Curtis. Lois was the lead plaintiff in Olmstead v. Lois Curtis, the monumental Supreme Court Case that solidified people with disabilities’ right to receive services in the most integrated settings possible. Curtis fought for the elimination of unnecessary segregation of people with disabilities. She believed that people with disabilities had the right to live in integrated settings that keep us in our communities. 

While her case furthered the rights of people with disabilities, unfortunately, she was erased from its history as the case, and the laws that came from it are commonly called, “Olmstead” laws. Many in our disability community do not know Curtis’s story, or how she was the catalyst to ensure that we can live and die in peace in our communities. 

Curtis was born in 1969 to a family in rural Georgia. She had cognitive disabilities and schizophrenia and was known to wander off into the community. Because of a lack of education and understanding of disabled people, Curtis often found herself in the custody of authorities, demanding that her family force her into institutionalization. She found herself soon trapped as a young adult in the Georgia Regional Hospital, spending her life heavily sedated and at the mercy of horrific treatment from the staff.

In the mid-90s she sought help from the Atlanta Lega-Aid Society, asking to be released and given services to live on her own in the community. They filed a case against the state of Georgia, the defendant being the Commissioner of the Georgia Department of Human Resources, Tommy Olmstead. In 1999 she won her case after the Supreme Court found that she was unjustly segregated as a person with a disability and that such segregation was discrimination in violation of Title II of the Americans with Disabilities Act! 

Curtis went on to live her life in her community, just as she wanted. She later became a self-taught artist exploring songwriting and singing. She spent her life fighting for the rights of other disabled people trapped in institutions. She was a speaker and an artist who toured the country to bring awareness to her cause. On her life outside of the institution, Curtis shared, “I feel good about myself. My life a better life.”

Today we hope to shine a light on her and her legacy as a Black disability rights advocate. In South Carolina today, despite Curtis’ case and life’s work, we still do not have laws that follow the directive set forth by the Olmstead v. Curtis decision. We shine a light on Curtis’ legacy by calling on South Carolina’s state lawmakers to follow the law and create a plan to help people with disabilities transfer out of congregate settings and into the community.

Curtis died from Pancreatic cancer on Thursday, November 3, 2022. A GoFund Me page set up to help her with medical expenses remains open to assist with the cost of the funeral that she deserves. You can make a donation by going to this link:

We will continue fighting, Lois. Thank you for paving the way.

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