The Disability Rights Movement

Pennhurst's legacy extends far beyond its physical grounds. The institution became a catalyst for the disability rights movement in America and around the world, helping to transform American jurisprudence and end mass institutionalization in the United States.[1] The history of the ADA did not begin on July 26, 1990 at the signing ceremony at the White House—it began long before, in cities and towns throughout the United States when people with disabilities began to challenge societal barriers that excluded them from their communities.[2]

From Exposure to Advocacy

Bill Baldini's 1968 television exposé, "Suffer the Little Children," did more than document abuse—it sparked a movement. Baldini notably placed blame not on individual staff members but on society's indifference, urging viewers to contact their state legislators and demand change.[3] The grassroots response was immediate and powerful. The state allocated $21 million for the deteriorating facility, though much of this funding was redirected to community programs, foreshadowing the deinstitutionalization movement to come.

Parent-advocates, social workers, and attorneys joined forces to challenge the dehumanizing conditions at Pennhurst and similar institutions. Their groundbreaking advocacy laid the foundation for lawsuits that would transform how America cared for its disabled citizens. The trial court's decision in Halderman v. Pennhurst is legendary among advocates for deinstitutionalization and disability rights.[4]

America's Undervalued Freedom Struggle: The disability rights movement has been described as America's most undervalued freedom struggle.[3] Yet it resulted in fundamental changes to American law, society, and consciousness comparable to other civil rights movements of the 20th century.

The Independent Living Movement

The ADA owes its birthright to the establishment of the independent living movement, which challenged the notion that people with disabilities needed to be institutionalized, and which fought for and provided services for people with disabilities to live in the community.[2] This movement began in the 1960s with pioneers like Ed Roberts, generally accepted as the father of the modern Disability Rights Movement, who became the first severely disabled student at the University of California at Berkeley in 1962.[5]

The independent living philosophy emphasized:

  • Self-determination and consumer control
  • Community integration over segregation
  • Civil rights rather than charity
  • Full participation in society
  • Economic self-sufficiency when possible

Legal and Legislative Milestones

The struggle for disability rights through Pennhurst contributed to several major legal and legislative achievements that transformed American society:

1963
President Kennedy's Call for Deinstitutionalization: President John F. Kennedy called for a reduction "over a number of years and by hundreds of thousands, (in the number) of persons confined" to residential institutions. Though not labeled such at the time, this was a call for deinstitutionalization and increased community services.[5]
1965
Christmas in Purgatory Published: Burton Blatt and Fred Kaplan's photographic essay documented the appalling conditions at state institutions for people with developmental disabilities, building public awareness of institutional abuse.[5]
1968
Architectural Barriers Act: The first federal disability rights legislation, mandating that federally constructed buildings and facilities be accessible to people with physical disabilities.[5]
1972
Wyatt v. Stickney: Federal court establishes right to treatment for institutionalized individuals, becoming a precedent in the battle for deinstitutionalization and establishing a right to community services for people with developmental disabilities.[6]
1973
Rehabilitation Act Section 504: Prohibited discrimination based on disability in programs receiving federal funding, marking the first major federal civil rights protection for disabled Americans. The 1977 HEW sit-in led by Judy Heumann secured enforcement of these regulations after a 25-day occupation—the longest occupation of a federal office in U.S. history.[7]
1973
Institutional Peonage Abolished: Following Souder v. Brennan, institutional peonage was outlawed. Pennsylvania's Institutional Peonage Abolishment Act of 1973 ended the practice of forced, unpaid labor by institutionalized individuals.[8]
1975
Education for All Handicapped Children Act: Guaranteed free appropriate public education (FAPE) to children with disabilities in the least restrictive environment, fundamentally changing special education in America.[9]
1978
Pennhurst Ruling: Judge Broderick's decision in Halderman v. Pennhurst established that institutionalization violated constitutional rights, providing legal precedent for closing institutions nationwide and establishing a right to habilitation.[10]
1987
Pennhurst Closure: After years of legal battles and appeals, Pennhurst permanently closed on December 9, 1987, with all remaining residents transitioning to Community Living Arrangements in the community.[11]
1988
Fair Housing Amendments Act: Added people with disabilities to those groups protected by federal fair housing legislation, establishing minimum standards of adaptability for newly constructed multiple-dwelling housing.[12]
1990
Americans with Disabilities Act: The landmark ADA prohibited discrimination based on disability in employment, public services, public accommodations, and telecommunications—the most comprehensive civil rights law for disabled Americans. President George H.W. Bush signed the Act on July 26, 1990, with widespread bipartisan support.[13]
1999
Olmstead Decision: The Supreme Court ruled in Olmstead v. L.C. that unjustified institutional isolation of persons with disabilities violates the ADA, reinforcing the right to community integration.[14]

The Capitol Crawl and ADA Passage

One of the most powerful moments in disability rights history occurred on March 12, 1990, when disability rights activists arrived at the U.S. Capitol to demand passage of the Americans with Disabilities Act. Over 1,000 protesters from 30 states gathered to protest the delay in passing the Act.[7]

After a day of rallies and speeches, over 60 activists abandoned their wheelchairs and mobility devices and began crawling up the 83 stone steps to the U.S. Capitol Building. Protestors chanted "What do we want?" "ADA!" "When do we want it?" "NOW!" As Paulette Patterson of Chicago stated while inching her way to the top: "I want my civil rights. I want to be treated like a human being."[7]

The "Capitol Crawl" became instrumental in the passage of the ADA, which was signed into law just four months later on July 26, 1990.

The ADA Definition: The ADA defined disability as "a physical or mental impairment that substantially limits one or more of the major life activities."[13] This definition, adapted from earlier Rehabilitation Act language, has shaped how American law understands and protects disability rights.

The Deinstitutionalization Movement

Pennhurst's closure was part of a broader deinstitutionalization movement that swept across America. The philosophy shifted from warehousing people with disabilities in large, isolated facilities to supporting them in community settings where they could participate in society, maintain family connections, and exercise self-determination.[15]

This transformation was not without challenges. Community-based care required significant investment in group homes, supported living arrangements, and community services. It also required changing deeply ingrained societal attitudes about disability and what people with disabilities could achieve given proper support.

The growth of Community Living Arrangements (group homes) and other support services reflected this change, as people returned to families and communities through deinstitutionalization. Home- and community-based services came to replace mandatory, and often lifelong, incarceration for citizens once referred to insultingly as "feebleminded" or "mentally retarded."[15]

Statistical Impact: At the peak of institutionalization in 1967, approximately 194,650 people with intellectual disabilities lived in large state institutions across America. By 2015, that number had dropped to fewer than 25,000, with most states closing all their large institutions entirely.[16]

Similar Institutions Across America

Pennhurst was far from unique. The Pennhurst story was repeated at many of the nearly 300 state facilities across the country.[3] Across the United States, similar institutions operated under similar conditions:

Willowbrook State School (New York)

Perhaps the most infamous institution after Pennhurst, Willowbrook housed over 6,000 residents in facilities designed for 4,000. In 1972, reporter Geraldo Rivera conducted an exposé revealing horrific conditions—naked residents covered in feces, lying on the floor in overcrowded wards. The resulting lawsuit, New York State Association for Retarded Children v. Rockefeller, led to its closure in 1987.

Fernald State School (Massachusetts)

Operating from 1888 to 2014, Fernald was the site of unethical radiation experiments on residents in the 1940s and 1950s. From 1946 to 1953, researchers from Quaker Oats, MIT, and Harvard carried out experiments to determine how minerals from cereals were metabolized. Parents were told their children would join a "Science Club" with special privileges, but were not told the children would be fed radioactive oatmeal.[8]

Rosewood Center (Maryland)

Opened in 1888 and closed in 2009, Rosewood at its peak housed over 3,000 residents. Investigations revealed abuse, neglect, and deaths that could have been prevented with proper care.

Sonoma State Hospital (California)

This facility sterilized approximately 1,000 residents between 1918 and 1952 as part of California's eugenics program—the model that inspired similar programs in Nazi Germany. California conducted more forced sterilizations than any other state.

These institutions shared common characteristics: severe overcrowding, chronic understaffing, insufficient medical care, lack of educational or therapeutic programming, and widespread abuse. They also shared a common endpoint—exposure, litigation, and closure as society rejected the premise that people with disabilities belonged hidden away from view.

Key Advocacy Organizations

The disability rights movement was built by thousands of individuals and dozens of organizations working together:

  • The Arc (formerly NARC/PARC): Parent advocacy organization that joined the Pennhurst lawsuit and fought for community services
  • Disability Rights Education & Defense Fund (DREDF): Legal advocacy and policy organization founded in 1979
  • ADAPT: Grassroots organization that fought for accessible public transportation and community living
  • National Council on Independent Living: Advocates for independent living centers and consumer control
  • Speaking for Ourselves: Self-advocacy organization co-founded by Pennhurst survivor Roland Johnson

Modern Impact and Ongoing Work

The legacy of Pennhurst and the disability rights movement it helped catalyze continues to shape policy and practice today. Community Living Arrangements have replaced large institutions. The principle of "least restrictive environment" guides educational placement decisions. Employment opportunities for people with disabilities have expanded dramatically, though significant barriers remain.

Disability rights are human rights, as stated by both the Americans with Disabilities Act and the United Nations Convention on the Rights of Persons with Disabilities. This was a sea change in social attitudes and public policy.[15]

Yet challenges persist. People with disabilities continue to face discrimination in employment, housing, and access to services. The COVID-19 pandemic highlighted ongoing vulnerabilities, particularly for those in congregate settings. Advocates continue the work begun by those who fought to close Pennhurst, striving for full inclusion, equal opportunity, and recognition of the inherent dignity and worth of every person.

Looking Forward: The ADA owes its birthright not to any one person, or any few, but to the many thousands of people who make up the disability rights movement—people who have fought and continue to fight for the rights of people with disabilities to fully participate in all aspects of American life.[2]

Citations and Sources

[1] Disability Rights Timeline. Temple University Institute on Disabilities. "Halderman v. Pennhurst State School & Hospital: Landmark lawsuit leads to the 1987 closure of Pennhurst."
[2] "The History of the Americans with Disabilities Act." Disability Rights Education & Defense Fund (DREDF). March 28, 2025. Description of disability rights movement origins.
[3] J. David Smith and Michael L. Wehmeyer. "Remembering 'Suffer the Little Children' and Pennhurst's Enduring Legacy." The Philadelphia Inquirer. June 22, 2018.
[4] "The Pennhurst Doctrines and the Lost Disability History of the 'New Federalism.'" California Law Review. May 5, 2023. Analysis of trial court decision as legendary in disability rights advocacy.
[5] "Where We Came From: A Brief History of the Disability Rights Movement." Disability Rights Center of Kansas. Timeline of disability rights milestones 1962-1990.
[6] "Timeline of disability rights in the United States." Wikipedia. August 27, 2025. Wyatt v. Stickney establishing right to treatment and community services.
[7] Disability Rights Timeline. Temple University Institute on Disabilities. Section 504 sit-in and Capitol Crawl documentation.
[8] "Timeline of disability rights in the United States." Wikipedia. Souder v. Brennan and Fernald experiments documentation.
[9] Education for All Handicapped Children Act of 1975, Pub. L. 94-142. Now known as Individuals with Disabilities Education Act (IDEA).
[10] Halderman v. Pennhurst State School and Hospital, 446 F. Supp. 1295 (E.D. Pa. 1978). Judge Broderick's ruling on constitutional violations.
[11] Pennsylvania Department of Public Welfare records. Pennhurst closure December 9, 1987.
[12] Fair Housing Amendments Act of 1988, Pub. L. 100-430. Adding disability protections to federal fair housing law.
[13] "Americans with Disabilities Act (ADA)." Britannica. August 11, 2009. ADA signed July 26, 1990 by President George H.W. Bush.
[14] Olmstead v. L.C., 527 U.S. 581 (1999). Supreme Court decision on community integration.
[15] "Pennsylvania, inconvenient truths and developmental disability." Lancaster Online. Description of deinstitutionalization and community living arrangements.
[16] National statistics on institutionalization from University of Minnesota Research and Training Center on Community Living, compiled from State of the States reports 1967-2015.