In Memory of Lois Curtis (1967–2022)
Summary
Lois Curtis, a Black disability activist, died in November 2022. She worked hard to make sure that disabled people could get help at home and visit their families and friends. She was tired of living in hospitals and other institutions where she couldn’t make her own choices. She filed a lawsuit against the state of Georgia that ended up going to the Supreme Court. In Olmstead v. L. C., the Court ruled that disabled people have the right to get help in the community. In this post, we remember the work she did to help disabled people get the help they need while being able to make their own choices.
We at the Autistic People of Color Fund are profoundly saddened to hear that Lois Curtis, a pioneering disability activist, artist, and public speaker, died of pancreatic cancer at the age of 55. As a Black woman with multiple disabilities, Curtis spent her life fighting discrimination, prejudice, and marginalization at multiple fronts.
Lois Curtis was born in the late 1960s and grew up in the state of Georgia. Diagnosed with an intellectual disability and schizophrenia, Curtis spent much of her adolescence and early adulthood in institutions, including jails, psychiatric hospitals, and private care facilities. Although she frequently asked to live in the community, she was denied this right. In these institutions, Curtis was often sedated with potent medications that stopped her from living the life she wanted to lead, prevented from pursuing her artistic dreams, and isolated from her family, friends, and community. She often called Legal Aid Atlanta, asking, “When can I get out of here?”
Eventually, Curtis did get out. In the mid-1990s, Curtis was living in Georgia Regional Hospital, where she was told that, although there was no need for her to be involuntarily committed, the hospital would not support her to live in the community. With the help of the Atlanta Legal Aid Society, Curtis filed an Americans with Disabilities Act (ADA) lawsuit against the state along with Elaine Wilson, another institutionalized woman with developmental and psychiatric disabilities. After arguing their case at federal district court and a federal appeals court, Curtis, Wilson, and their legal team went to the United States Supreme Court. In Olmstead v. L. C., the Court ruled in Curtis’s favor, 6–3. The Olmstead ruling declared that under the ADA, that people with disabilities across the United States are entitled to live at home and receive services instead of being consigned to institutions that deprive them of their autonomy, rights, and human dignity. It is this ruling that caused Medicaid to shift much of its funding from institutional settings to services that people receive at home, within their communities, among their friends, families, and neighbors. Though there is still progress to be made—institutional care under Medicaid is an entitlement, whereas home-based services require waivers—Olmstead played a pivotal role in deinstitutionalizing disabled people. Without Curtis’s tenacity and grit, thousands of disabled people, including Curtis herself, might still be languishing in institutions rather than living in the community with disabled and nondisabled people alike. After the Olmstead ruling, Curtis moved out of Georgia Regional Hospital, living in various group homes and community settings before living in her own apartment. Before her death, she had a support system in place to help her make decisions about her life while respecting her autonomy.
As an organization dedicated to disability justice and liberation, we are proud to carry on Lois Curtis’s legacy.
Rest in power, Lois Curtis. May your memory be a blessing.
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