Lois Curtis and Her Legacy on Disability Rights 

Friday, November 18, 2022

This month, the disability community lost a visionary, artist, oracle, and impactful leader: Lois Curtis. Lois Curtis is a Black disabled woman who passed in her home at 55. If you don’t know the name Lois Curtis, please read and learn about her and the immense impact she has had in the fight for disability rights.

The Story of Lois Curtis and the Olmstead decision 

Lois Curtis was a young disabled woman living in Georgia. She was diagnosed with schizophrenia and developmental disabilities when she was young. Approximately 40-50 years ago, a diagnosis like hers likely meant you would live in an institution. Americans with disabilities were largely housed in institutions like nursing homes, psychiatric hospitals, or in facilities for those with developmental disabilities, where residents had to follow rules about things like when and what they could eat, when they could go outside, and even who they were allowed to date or marry. Before the Olmstead decision in 1999, there were no laws protecting people with disabilities and their rights to choose where to live. That would all change with Lois and her advocacy. 

While living in a Georgia institution, Lois Curtis advocated for herself. She often called lawyers and social workers, talked about her experience, and asked for help to leave the state hospital she lived in. This advocacy paid off, because in 1995, a lawyer took on her case and filed a lawsuit on her behalf. Lois Curtis became one of two plaintiffs in one of the most influential disability rights lawsuits in American history: Olmstead v. L.C.. (L.C. was none other than the Lois Curtis.)  

This case was about how Lois Curtis and Elaine Wilson (Lois’s friend and other plaintiff) both remained confined to a Georgia institution for several years despite being deemed appropriate for community-based treatment. These two disabled women were more than able to participate and live in the community, but they were kept in an institution instead. The lawsuit argued that the choice to keep them in an institution was unjustified and discriminatory due to disability. Eventually, this court case made its way to the Supreme Court. In a 6-3 decision, the justices decided that unjustified segregation and institutionalization of individuals with disabilities was a form of discrimination prohibited by the Americans with Disabilities Act (ADA). After this ruling, people with disabilities had the right to get services they needed in their communities, rather than in institutions.  

Because of the Olmstead Decision, people with disabilities, like Lois Curtis and Elaine Wilson, gained the right to receive state-funded supports in the community – or in other words, not in institutions. This lawsuit and new right affirmed the argument that had been made by advocates for decades: having these choices in the community isn't more expensive.  In fact, living in the community costs less – much less. For example, in 2009, 10 years after the Olmstead Decision, the National Council on Disability found that annual cost of institutional care was more than community-based supports in every state.  Care costed $188,000 per person in a facility versus only about $42,000 for comparable services in the community.  

The Olmstead Decision led to other disability rights cases that pushed states to create plans to reduce their institutionalized populations. However, progress since Olmstead has been slow. According to the US Census in 2010, over two million people were housed in some kind of facility. The number of people living in institutions remains very high today.  

Community living isn't just a preference, it's a civil right. That's the legacy of Lois Curtis, Elaine Wilson, and the Olmstead decision. You have the right to choose your community and the right to access supports you may need in your home, rather than in a facility. As time passed after the Olmstead decision, Lois continued to advocate for disability rights, creating opportunities to visit President Obama at the White House, showcase her art, and share the talents and value of the disability community. 

Watch this quick explainer video summing up the history of the Olmstead Decision: 

Here are a few of Lois’s most popular pieces

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