Life Story: Lois Curtis (c. 1969–2022)

Lois Curtis was born around 1969 and grew up in Georgia. She enjoyed going to school but struggled in class. As a child, she was diagnosed with cognitive and developmental disabilities. Her parents struggled to take care of her. Lois often ran away and her mother had to call the police to find her.

When Lois was 11 years old, her family decided to commit her to the Georgia Regional Hospital. At the time, it was common to send people with developmental disabilities to live in hospitals. But these hospitals were not always equipped to support or treat patients with developmental disabilities. The hospital treated Lois like a patient with an emotional or mental disorder, not like a child with developmental challenges. 

Patients at Georgia Regional Hospital had little freedom. The state government funded the care of people with developmental disabilities, but there was generally no plan or support for transitioning them back into their communities. Lois decided she wanted to move out of the hospital when she was 19 years old. She hated living in a hospital.

After a few years of trying to leave the hospital, Lois received permission to relocate to a personal care home. Lois had lived in the hospital for over a decade and it was difficult for her to adjust to life outside of it. Although she did not need 24/7 care like she received in the hospital, Lois still needed support from trained staff. Unfortunately, the home was not prepared to provide that level of care. The state of Georgia refused to pay for staff to help Lois in her daily life.  Sadly, the only option for her was to return to the Georgia Regional Hospital. 

Lois remained determined to build a life for herself outside of the hospital. Her doctors once again determined that Lois would be able to live on her own as long as she received the proper  support. However, the state continued to refuse to pay for this care.

While living at the hospital, Lois met Sue Jamieson, a lawyer with the Atlanta Legal Aid Society. Sue asked Lois if there was anything she could do for her. She replied, “Would you please get me out of here?”

Lois’s doctors explained to Sue that they were very frustrated with the state. They knew Lois would be able to live in the community. The issue was funding. While Georgia had a program to provide support for people with developmental disabilities, Lois was not eligible. She lived in a state hospital and only patients in private hospitals could apply. Even if she had been eligible, the wait list was years long.

Around the same time that Lois and Sue were getting to know one another, the Supreme Court decided an important case. In Helen L. v. Pennsylvania, a young mother sued the state to pay for her care to live in the community. She argued that the government already paid for her to live in a hospital, so it could use that money for her to live on her own with her children instead. The court sided with Helen. The decision was based on the Americans with Disabilities Act of 1990 (ADA), which requires services in the most integrated setting possible. For Sue, this was a sign that Lois had a strong case against the state of Georgia.

Still, Sue and the other lawyers at the Legal Aid Society knew that they faced significant challenges. There were many stereotypes about people with cognitive and intellectual disabilities. Courts regularly ruled in favor of keeping patients institutionalized. But despite these hurdles, Lois agreed to participate in the case. 

Sue filed a lawsuit on behalf of Lois in 1995. The request was for the state of Georgia to pay for Lois to live in the community with proper support, as her doctors recommended, instead of in the hospital. The case became known as Olmstead v. L.C. Tommy Olmstead was a government representative for the state as the Commissioner of the Georgia Department of Human Resources. To protect her privacy, the lawyers used Lois’s initials instead of her full name.

The lawyers added a second plaintiff, Elaine Wilson, shortly after they filed the case. Elaine was a patient in a similar situation. She suffered brain damage as a child and moved into a mental hospital at the age of 15. In the early 1980s doctors determined she was able to live on her own. As with Lois, Elaine found it difficult to get by without support and she was also in and out of hospitals. Elaine’s doctors also felt she would be better off living in the community with support. 

The case made its way through the courts and came before the Supreme Court of the United States in 1999. The lawyers understood it would be difficult to win. Out of the nine justices, they knew three justices would likely vote in their favor and three would vote against. Of the remaining three, they needed two votes. 

On the day of oral arguments, Sue and Lois walked up to the Supreme Court. They saw hundreds of disability rights activists on the steps with signs. Sue and the other lawyers were even more nervous, realizing that this case would decide the fate of so many people. But Lois loved it. The entire trip to Washington, D.C. was an incredible taste of freedom.

On June 22, 1999, the Supreme Court released its decision in the case. Justice Ruth Bader Ginsburg wrote in the majority opinion that under the ADA it is illegal for a state to discriminate against a person because of their disability. The court ruled that the state of Georgia discriminated against Lois and Elaine for requiring them to live in a hospital. The state was required to provide services for them to live in the community, as they wished.

Lois and Elaine both moved out of the hospital and lived independently with support services paid for by the state. The lawyers had shown that it was not only legally required, but also cheaper for the state to support people with disabilities in their own homes. In the two decades since the Olmstead decision, as the case became known, thousands of people have been moved out of hospitals to live independently.

Lois thrived on her own and became a visual artist. She focused on portraits with bold colors. Lois did not have pictures of herself as a child, so the portraits depict the value of personal relationships with the people in her life. In 2004, the U.S. Department of Labor provided her with an employment grant that allowed her to organize several exhibits of her work. For Lois, the joy of self expression was the most important in being an artist.

On June 20, 2011, President Barack Obama invited Lois to the White House. She met him in the Oval Office and gifted him one of her original paintings, Girl in Orange Dress. It is a piece from her collection of self-portraits.

Lois Curtis passed away from pancreatic cancer on November 3, 2022.

• Atlanta Legal Aid Society: A nonprofit legal organization based in Atlanta that provides legal services to people in need.
• cognitive or developmental disability: A condition that makes it more difficult for someone to perform mental tasks.
• institutionalize: To send someone who is mentally or physically ill to live in a hospital, usually for an extended period of time.
• majority opinion: An explanation of the decision made by the majority of the justices in a Supreme Court case, written by one of the justices that agrees with the majority.
• personal care home: A living facility where staff assists residents with their daily needs.
• plaintiff: A person who brings a court case against someone else.