Since she was a child, Lois Curtis was involuntarily moved from one mental institution to another. She had grown up with cognitive and developmental disabilities that had made it difficult for her family to care for her at home and for teachers to cope with her at school.
She would randomly wander away. Missing person calls to the police would land her temporarily in jail or in a psychiatric hospital. She had not yet celebrated her 12th birthday when she became a part-time patient at Georgia Regional Hospital, in and out of its child and adolescent mental health unit, where she was often kept sedated.
She was confined for nearly two decades in institutions, all along wishing that she could be transferred to a more suitable setting, like a group home in her own community.
“I prayed to God,” she recalled in an interview for the University of Minnesota’s Institute on Community Integration in 2014. “I cried at night so I prayed to God every night in my bed.”
Ms. Curtis ultimately became the lead plaintiff in Olmstead v. L.C., the case in which the United States Supreme Court ruled in 1999 that warehousing people with developmental disabilities in deficient mental institutions, when they are capable of being integrated into community settings in group homes or host homes, constituted discrimination under the 1990 Americans With Disabilities Act.
“What has changed as a result of the decision? Everything,” Susan Walker Goico, director of the Atlanta Legal Aid Society’s Disability Integration Project, said in an email.
“The way states provide disability services has completely transformed,” she added, “from a mostly institutional model to one that is much more community-based.”
Ms. Curtis died on Nov. 3 at her home in Clarkston, Ga., outside Atlanta. She was 55. The cause was pancreatic cancer, her aunt Shirley Traylor said.
The case that took Ms. Curtis’s cause to the Supreme Court began in 1995, when the Atlanta Legal Aid Society filed suit against Tommy Olmstead, Georgia’s commissioner of human services, demanding that the state transfer Ms. Curtis, who was 27 at the time, to a group home or other facility where she could receive more appropriate care. Ms. Curtis was identified only as L.C. in court papers.
“She’d say: ‘Get me out of here. Would you please get me out of here?’” Sue Jamieson, her Legal Aid lawyer, recalled in an oral history for the society. “‘When am I getting out of here?’”
A Justice Department ruling had determined in 1991 that services and programs under the disabilities act were to be offered “in the most integrated setting appropriate to the needs” of the people being served. By the time the suit was filed, state doctors in Georgia had concluded that Ms. Curtis could receive more appropriate care in an intimate group home.
The Legal Aid Society convinced the federal courts that Ms. Curtis and another plaintiff had been denied their civil rights because, they said, Georgia had violated what became known as the “integration mandate.”
Georgia appealed the decision to the Supreme Court, having argued, as one defense, that there had been insufficient funds to provide community care. (Seven states filed supporting briefs, but 15 other states that had originally joined with Georgia reversed their position before the Supreme Court ruled.)
The 6-3 opinion by Justice Ruth Bader Ginsburg declared that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment.”
The Court ordered state and local governments receiving federal funds to comply with regulations that required them to make “reasonable modifications” to provide more community support systems for disabled people, like counseling, housing assistance, job training, medical care and help in managing daily tasks like shopping and cooking.
“This is the first time the court has announced that needless institutionalization is a form of discrimination,” Ira Burnim, the legal director of the Bazelon Center for Mental Health Law, a Washington nonprofit that coordinated briefs for the women’s Supreme Court case, said at the time.
Lois Jeanette Curtis was born on July 14, 1967, in Atlanta to Mae (Traylor) Curtis Keith, a housekeeper, and Melvin Lewis Curtis, a truck driver. She was institutionalized for most of her teenage years and her 20s.
Stephen F. Gold, a lawyer representing Adapt, a national organization of people with disabilities, pronounced the Olmstead ruling “the Brown v. Board of Education for disability rights,” likening it to the Supreme Court’s 1954 opinion that a separate but equal school system for Black students was unconstitutional.
But even after the court ruled, said Maria Town, president of the American Association of People With Disabilities, Ms. Curtis “lived in and out of institutions for the next decade, because it took time to build the systems of community support that the Olmstead decision mandated.”
She eventually moved into her own apartment, worked as an artist and exhibited her work, boldly colorful pastel and acrylic portraits, in Georgia galleries. She became a public advocate for the rights of people with disabilities and on June 20, 2011, she presented one of her paintings to President Barack Obama in the Oval Office.
In addition to aunts and uncles, she is survived by two sisters, Patricia Cook and Bobbie Jean Cloud.
In 2014, Ms. Curtis was asked what she would say to people who were still institutionalized but who hoped some day to have a better life. She paused, uncertain of how to respond, until her interviewer referred her to a letter she had written a few years earlier.
“Hello to all the people living in institutions, I remember you,” Ms. Curtis wrote. “Give me a prayer. Sometimes I feel good about my life. When I feel bad about my life I name my country, sing the gospel and bring my mind back home. I will sing with you again. Have a beautiful day. Love, Lois.”
Then, with a big smile and a deep laugh, she added: “Yeah! I think some day it always gonna be a beautiful day!”