Alec Jeffreys’s Experiments to Identify Individuals by Their Beta-globin Genes (1977-1979)

By: Corey Harbison
Published:

Olmstead v. L.C. (1999)

Editor’s Note: The following article contains discussion of terms that, as of 2022, are no longer acceptable for describing people with disabilities. Terms such as "retarded" belong to the people who originally used them and do not reflect the views of the Embryo Project authors and editors.

In the 1999 case Olmstead v. L.C., hereafter Olmstead, the United States Supreme Court held in a six-to-three decision that the forced segregation of people based on disability violated the Americans with Disabilities Act. Two women with mental and intellectual disabilities, Lois Curtis and Elaine Wilson, referred to as L.C. and E.W. in case documents, sued the state of Georgia and Tommy Olmstead, the Commissioner of Georgia who headed the Department of Human Resources, for alleged violations of the Americans with Disabilities Act. The two women each voluntarily admitted themselves to treatment in the state-run Georgia Regional Hospital in Atlanta, Georgia, in 1990. After doctors cleared Curtis and Wilson for transfer into a community-based health setting with non-disabled people, the hospital denied them treatment in a community-based setting due to the financial costs of such treatment and the lack of space. Olmstead protected the rights of people with disabilities outlined in the Americans with Disabilities Act by finding the unjustified segregation of disabled people unconstitutional.

Olmstead involves interpretations of the Americans with Disabilities Act, or the ADA, a federal law passed in the US in 1990. The law prohibits discrimination based on disability in public accommodations, employment, and by the government. Title II of the ADA specifically outlines provisions against government-based discrimination based on disability, extending to institutions that receive federal funding, like schools and hospitals. The ADA requires that disabled people be integrated into community settings as much as possible through reasonable accommodations as necessary. The ADA also requires integration and modification of disabled people into settings without disabled people as long as the alterations do not change the basic nature of the service. The case also involves the Fourteenth Amendment of the US Constitution, which prohibits violations of due process, which means that a person can only be denied rights like freedom or property after a fair proceeding, such as a hearing or trial.

Curtis and Wilson were intellectually and mentally disabled individuals who spent many years of their childhoods and adult lives institutionalized in medical facilities because they did not receive support for their disabilities in a community setting. Curtis was born in 1969 to a low-income family. Curtis was diagnosed with schizophrenia and what was called "mental retardation" at that time and spent most of her teenage years in institutions as her family could not afford to take care of her. Curtis had a history of calling the Atlanta Legal Aid Society and other legal service groups while in the hospital asking for assistance in getting released from her confinement. Wilson was born in 1951 and had physical and developmental disabilities resulting from brain damage caused by a high fever during infancy. Wilson experienced over thirty-six stays in mental institutions where the people holding her subjected her to shock treatments and psychotropic drugs as a teenager.

In 1990, Curtis and Wilson were admitted into Georgia Regional Hospital and confined in the psychiatric unit. After receiving clearance from their doctors to continue their treatment in a community-based setting, the hospital denied their transfer request and kept Curtis and Wilson in confinement for several more years. The Atlanta Legal Aid Society, an organization that provides free legal aid services to low-income people in civil rights cases, sued the hospital system on the women's behalf in 1995, alleging violations of the ADA and the Fourteenth Amendment of the Constitution. The Atlanta Legal Aid Society sued the Georgia state officials in charge of Georgia Regional Hospital's decision to keep the women in isolation, and specifically named Olmstead in the lawsuit who headed Georgia's Department of Human Resources.

Olmstead built on several previous court cases on the right to rehabilitative services and integration for people with disabilities in medical facilities. One case was the 1972 case Wyatt v. Stickney, a district court case in Alabama which held that people involuntarily committed to institutions have a constitutional right to treatment that will improve their conditions and provide them with the opportunity to return to society. Another was the 1975 federal circuit court case New York State Association for Retarded Children v. Carey, which found the conditions of Willowbrook State School, a state-run institution for children with disabilities on Staten Island in New York City, New York, unconstitutional based on extreme overcrowding and squalid conditions.

In 1997, the Atlanta Legal Aid Society argued the case before the US District Court for the Northern District of Georgia. The court appointed Jonathan Zimring as the guardian ad litem for Curtis and Wilson. A guardian ad litem is an individual responsible for representing the interests of a person in court deemed too young or otherwise incapable of representing themselves. The district court granted summary judgment in favor of Curtis and Wilson, which is an order given by a judge without a full trial, saying that they qualified as people with disabilities and that Olmstead discriminated against them on that basis. The court found Olmstead in violation of Title II of the ADA but said they did not have to rule on the alleged Fourteenth Amendment violations since the court already found the hospital at fault for violating the ADA. No other court addressed the Fourteenth Amendment complaint.

The state of Georgia appealed the district court decision to the U.S. Court of Appeals for the Eleventh Circuit in 1998. The appellate court affirmed the district court's decision in favor of Curtis and Wilson. However, the appellate court also remanded the case back to the district court to consider Olmstead's defense that integrated settings were unreasonable accommodations as the strain on the state’s mental health budget would fundamentally alter the nature of the service. Olmstead argued that the cost of including people with disabilities similar to Curtis and Wilson in community-based settings would be so substantial that the state would no longer be able to afford its current mental health programs, thus altering the nature of the mental health services performed by the state. Before the district court heard the remanded case, the US Supreme Court granted certiorari, which means they would hear the case themselves.

Arguments before the Supreme Court occurred on 21 April 1999. Beverly Downing, the senior assistant attorney general of Georgia, argued on behalf of Olmstead, and civil rights lawyer, Michael Gottesman, argued the case on behalf of Curtis and Wilson. Downing argued that the ADA mandates equal treatment of people with disabilities but does not mandate that Georgia build more integrated facilities to meet the demand for those services. Gottesman argued the contrary, stating that the interpretation of the ADA by the Attorney General of the US indicates that services must be provided in the most integrated setting possible. He admitted that no part of the ADA mandates that a state must offer mental health services. However, since the state does offer the service, they are not permitted to discriminate on the basis of disability for access to the service.

On 22 June 1999, in a six-to-three decision, the Supreme Court ruled in favor of Curtis and Wilson, finding that the state cannot discriminate on the basis of disability concerning who could access integrated community-based services. Writing the majority opinion, Justice Ruth Bader Ginsburg was joined by Justices John Stevens, Sandra Day O'Connor, Anthony Kennedy, David Souter, and Stephen Breyer. Ginsburg wrote in the opinion that the court's ruling on the case was exclusively an interpretation of legislative statute as they considered no Constitutional question in the arguments. The majority found that Title II of the ADA requires that states integrate people with disabilities into community settings whenever justified. Ginsburg further wrote that unjustified segregation of people with disabilities perpetuates notions of unworthiness of people with disabilities to engage in community life and opportunities. The dissenting opinion was written by Justice Clarence Thomas and was joined by Chief Justice William Rehnquist and Justice Antonin Scalia. The dissenting opinion disagreed with the majority's definition and application of discrimination, arguing that temporary segregation of people with mental disabilities in an institution does not constitute discrimination on the basis of disability.

In the decades following Olmstead, multiple US presidential administrations used the precedent set by the case to expand protections to people with disabilities in various settings. President William Clinton’s administration looked to use the case to support the implementation of policies involving people with disabilities. Secretary of Health and Human Services Donna Shalala advocated to state legislators and governors in the months following Olmstead to implement the integration required by the Supreme Court's interpretation of the ADA. In 2001, President George W. Bush issued an executive order for federal assistance in implementing community-based alternatives to institutionalization as required by Olmstead. In 2009, President Barack Obama took additional executive action to bring all state institutions into compliance as well as expand the efforts to include nursing homes and congregate care facilities. Litigation by the US Justice Department and advocacy groups expanded the influence of Olmstead to schools and sheltered workshops. Sheltered workshops are segregated working facilities for people with disabilities that often do not have to meet state requirements for employment standards and pay subminimum wages to disabled employees.

Because of the case, Curtis and Wilson continued to receive integrated care in a community setting. As of 2022, Curtis remains in community-based care in Georgia, where she works as an artist. Curtis has showcased her work across the US, including in the White House. Wilson remained in community-based care until her death on 5 December 2004.

Olmstead broke down barriers preventing full integration of people with disabilities into their communities. As of 2022, people with disabilities continue to experience segregation based on their disability. However, the Olmstead decision began the process to eliminate those experiences. Hundreds of thousands of people with disabilities have benefited from community integration that Olmstead helped support. As of 2022, some consider the right to integrate within broader society inapplicable to people with certain disabilities, and advocacy to the contrary is an ongoing dispute.

Sources

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How to cite

Harbison, Corey, "Alec Jeffreys’s Experiments to Identify Individuals by Their Beta-globin Genes (1977-1979)". Embryo Project Encyclopedia ( ). ISSN: 1940-5030 https://hdl.handle.net/10776/12955

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Arizona State University. School of Life Sciences. Center for Biology and Society. Embryo Project Encyclopedia.

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