Feature Issue on Disability Rights, Disability Justice

Clear-language summary

Everyone should know how the Disability Rights Movement began, and where it stands today. There is a long history of mistreating people with disabilities, from using them in scientific experiments and keeping them from having children, to making them live in large facilities with little control over their daily lives. The Disability Rights Movement that began around the time of the U.S. Civil Rights Movement helped create laws to improve living conditions, education, and work opportunities for people with disabilities, but reality often falls short of these standards. Involuntary sterilization and healthcare injustices still happen. So do disparities and stereotypes based on culturally learned values and perceptions. As we pursue social justice for people with disabilities, we must address the unfinished business of disability rights, which includes securing opportunity, inclusion, independent living, and economic self-sufficiency for all people with disabilities, regardless of the complexity of the supports they need.

The disability community, policy makers, and the public need to know how the disability rights journey began. They also need to know where laws, regulations, and research stand today. Despite decades of deinstitutionalization and legislation giving people with disabilities the right to education and other important aspects of community living, many remnants of the past linger in all states and in all public education and supports and services systems. For proof, consider that individuals with disabilities between the ages of 16 and 64 continue to represent the single largest population living in poverty, according to the Bureau of Labor Statistics. This makes no sense when the federal Individuals with Disabilities Education Act (IDEA), Rehabilitation Act, Social Security Act, Americans with Disabilities Act (ADA), and Medicaid Home and Community-Based waivers are all completely aligned today. They are based on an expectation that all persons with disabilities, regardless of supports needed, have strengths, interests, and preferences that can be discovered and used to build an education, a career path, and a meaningful life as a valued member of the community. Unfortunately, the reality is that laws do not always change people’s behaviors that are based on culturally learned values and perceptions, leading to negative stigma and stereotypes.

Values in Culture and Policy

All public policies are based on societal values. Values change over time in laws and court decisions, but those powerful words do not erase culturally learned stigma and stereotypes, referred to today as implicit bias. The field has transformed on paper and in some communities from a medical model of fixing deficits, eugenics, “ugly laws,” pity, charity, and institutionalization to an arc of civil rights, individualization, community inclusion, participation, and belonging during the past 50 years. Laws can be amended or repealed at any time, however. Federal and state funding are continuous issues and often threatened. Disability advocacy is a participatory sport and requires eternal vigilance if we are to move from civil rights achievements in policy to social justice and community belonging in everyday life. As long as children with developmental disabilities continue to spend the majority of their school days in segregated school settings, their neurotypical peers, who are future parents, teachers, physicians, and employers, will continue to develop implicit bias that perpetuates segregation. Disability advocacy requires action, participation, and pride, rather than shame and separation.

On March 12, 1990, people with disabilities left their wheelchairs to demonstrate the inaccessibility of many public spaces and the need for the Americans with Disabilities Act. “Capitol Crawl,” photo by Tom Olin.

Fighting for Disability Rights

To be sure, some progress has been made, but the fight for disability rights is ongoing. Issues of disability rights in the past still leave an impact on the present.

Institutionalization has declined dramatically in the last half century – but it proliferated in the middle 1800s. In 1848, The Experimental School for Teaching and Training Idiotic Children opened in the state of Massachusetts. It was later renamed the Walter E. Fernald Development Center in honor of its third superintendent, Walter Fernald, an advocate of eugenics who used the school’s residents as test subjects for sterilization and radiation experiments. It remained open until 2014.

Though discredited, eugenics, an ideology aimed at altering the population’s gene pool to promote or eliminate certain characteristics, gained favor many times throughout history, including during the reign of Nazi Germany.

As recently as the COVID-19 pandemic, persistent inequities in access to healthcare resources ignited the disability advocacy community.

Meanwhile, most local school districts and state education agencies continue to debate the topic of school inclusion. The hard-fought values of dignity and respect and massive research funded by the U.S. Department of Education through the SWIFT Project and the TIES Center (tiescenter.org), among many others, prove the value to all students of inclusive classrooms when they include competent staff, individualized universal design for learning and assistive technology, as required by law.

Laws imposing fines on people with disabilities who dared to beg, panhandle, or otherwise exist in public remained on the books for decades, until Chicago became the last to repeal its law in 1974, just 50 years ago. Immigration laws in the early 1900s explicitly barred “feebleminded” immigrants who were likely to become dependent on certain government benefits in the future, making them a public charge. Though altered several times, the concept is still part of U.S. immigration policy and may play a role in why, according to the Kaiser Family Foundation, many immigrants today are afraid to apply for benefits.

In 1977, protestors in San Francisco advocate for the signing of Section 504 of the 1973 Rehabilitation Act. Photo by Anthony Tusler, atusler@aboutdisability.com

In 1927, U.S. Supreme Court Chief Justice Oliver Wendell Holmes wrote the majority opinion in Buck v. Bell, arguing that a state statute permitting compulsory sterilization of the unfit, including people with intellectual disability, was "for the protection and health of the state" and did not violate the due process clause of the Fourteenth Amendment. Despite the changing attitudes regarding sterilization, the Supreme Court has never expressly overturned Buck v. Bell.

Today’s federal disability civil rights statutes, including Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, should provide legal protections for people with disabilities, including those with physical, sensory, and mental impairments.

Still, involuntary sterilization continues. A November 20, 2023, New York Times article stated that “Forced sterilization, with its history of racism and eugenics, is banned under multiple international treaties. Thirty-seven European nations and the European Union have ratified the Istanbul Convention, which declares, without exception, that nonconsensual sterilization is a human rights violation.” An investigation by the Times “found over a third of those countries have made exceptions, often for people that the government deems too disabled to consent. Some countries have banned the practice but have not actually criminalized it. And records show that the Istanbul treaty’s official watchdog has repeatedly criticized governments for not doing enough to protect disabled people. (The United States has signed but not ratified a separate treaty on the issue [the U.N. Convention on the Rights of Persons with Disabilities (rtc.umn.edu/prb/252)], and sterilization laws vary by state). The result is that people with intellectual and other disabilities — mostly women — are still being sterilized, even when it is not medically necessary.”

During the New Deal era, President Franklin D. Roosevelt established Social Security and Crippled Children’s Services, renamed 50 years later as the Program for Children with Special Health Care Needs. Roosevelt, a polio survivor who used a wheelchair and did his best to hide it from public view, created the children’s services program with a provision that services could only be provided to children who “could benefit.” This excluded children who also had an intellectual disability.

The Fair Labor Standards Act of 1938, under Section 14c, allowed employers to pay workers with disabilities less than minimum wage. This was intended to increase jobs and pay for people with disabilities, but disability rights activists today are working to end subminimum wages, noting that advances in supported and customized employment, assistive technology, and civil rights protections requiring reasonable accommodations can better assure equal opportunity and equity.

In the late 1940s, as some parents began to seek alternatives to institutionalization for their children, they created the Arc and United Cerebral Palsy, organizations that are still providing services and advocacy today through large networks throughout the country.

President John F. Kennedy, with his sister Eunice Kennedy Shriver, powered legislation in the 1960s that established what is known today as University Centers for Excellence in Developmental Disabilities after their sister Rosemary was institutionalized following a prefrontal lobotomy at age 23. Legislation several years later created a network of state councils on developmental disabilities, followed by a network of protection and advocacy agencies in every U.S. state. The federal government also began the development of community mental health services.

Discrimination based on disability was not included in the sweeping Civil Rights Act of 1964, but people with disabilities did win expanded health care access through the enactment of Medicaid and Medicare in 1965, programs that continue to require diligent advocacy work to sustain.

An ad for the movie Crip Camp, featuring a young man in a wheelchair in front of another man standing with a guitar over his shoulder. A man holds another man in his arms while another man looks at them.

A photo and an ad for the film Crip Camp. Photos Courtesy of Crip Camp: A Disability Revolution.

Seven years after the Civil Rights Act, parents sued the Commonwealth of Pennsylvania for denying their children with disabilities an education, alleging civil rights violations. A consent agreement was approved by the federal court in 1972. This laid the groundwork for a 1975 civil rights law known as the Education for All Handicapped Children Act, guaranteeing the right to a free, appropriate education for students with disabilities in the least restrictive environment, a standard that advocates still fight for nearly a half-century later. The Individuals with Disabilities Education Act (IDEA) in 1990 amended the law to focus on each child’s individual plan and removed the negative term “handicapped.”

Following the momentum created by the Civil Rights Act of 1964, the disability community advocated for and won passage of Section 504 of the Rehabilitation Act, prohibiting discrimination against people with disabilities by any entity receiving federal funds. It took more than four years – and protest demonstrations across the country – to create regulations to even begin enforcing the 1973 law. I was one of more than 500 persons who attended demonstrations in San Francisco’s Civic Center Plaza. After 28 days of the sit-in and consistent pressure from the protestors, Secretary Joseph A. Califano, Jr., an appointee of President Jimmy Carter, agreed to sign and implement Section 504 and provide greater access and accommodations for people with disabilities to federally funded buildings. The 504 Sit-in was a groundbreaking moment in the Disability Rights Movement. It brought public attention to the struggles faced by people with disabilities and highlighted the need for better accessibility and accommodations. For the first time, disability was looked at as a civil rights issue rather than charity and rehabilitation at best, pity at worst. The protest was a powerful reminder of the importance of each person with a disability advocating for one's rights and fighting for change, even in the face of adversity.

Media began exposing egregious denials of human rights inside state institutions. A 1972 television expose by ABC investigative news reporter Geraldo Rivera showed serious overcrowding, dehumanizing practices, dangerous conditions and regular abuse of residents at Willowbrook State School on Staten Island, New York. Residents filed a class-action lawsuit, resulting in a consent agreement that established new rules at the facility. In 1987, it closed permanently. Congressional hearings on Willowbrook led to the legislation that created the previously mentioned protection and advocacy agencies in each state.

Ed Roberts, a person who acquired polio at age 14 and who used a wheelchair and ventilator, sued the University of California Berkeley to gain admission, which the school had denied. He enrolled in 1962, fought with friends to not use the infirmary as their dormitory, and founded the Physically Disabled Students Program, which became the Independent Living Center at Berkeley. The program informed the creation in 1978 of the Centers for Independent Living under amendments to the Rehabilitation Act. The centers are organized around values that include consumer control, peer support, self-determination, and full inclusion of people with disabilities in the community. Every state has an Independent Living Council and multiple Centers for Independent Living, and individuals with disabilities make up a majority on all boards of directors. This historic legislation was the first of all federal disability laws in effect today to focus on valued outcomes in the community for each individual with a disability.

“The Largest Minority,” transit riders in Tennessee protest poor service for people with disabilities (1990). Photo by Tom Olin.

Building on the Independent Living Movement and the closure of institutions, the fledgling Self-Advocacy Movement of individuals with intellectual and developmental disabilities (IDD) organized the first national convention in Salem, Oregon in 1974. More than 600 self advocates attended. Today, Self Advocates Becoming Empowered (SABE) is a national organization with representatives in every U.S. state.

The 1980s also saw the establishment of options for individuals to receive Medicaid waivers for home and community-based services (HCBS) in lieu of institutional care, and additional Rehabilitation Act amendments added the Client Assistance Program (CAP) as a method for individuals displeased with their rehabilitation plan or process to appeal, with an advocate. In most states today, the CAP is housed in the state’s Protection & Advocacy System, for increased objectivity. The decade also saw advances in early intervention services and supported employment, and the National Council on Disability documented massive examples of discrimination against people with disabilities, which spurred momentum for what would become the 1990 Americans with Disabilities Act.

The ADA is a landmark civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities can access reasonable accommodations to enjoy the same rights and opportunities as everyone else. The U.S. Supreme Court affirmed the ADA in 1999 through Olmstead v. L.C., with Justice Ruth Bader Ginsberg writing the majority opinion in a case brought on behalf of Lois Curtis and Elaine Wilson, women with disabilities who were segregated in institutions instead of receiving appropriate supports in integrated settings. In 2014, new federal regulations further required that all Medicaid-funded HCBS settings be integrated into the community and that all person-centered plans be developed by and with each individual based on their strengths, preferences, and needs, with supports to make informed choices. A decade later, most states are still struggling to implement the person-centered planning rules and the requirement for providing supports for individuals in the most integrated setting.

The initial implementation of the ADA was positive for people with disabilities, but that began to change as ADA cases made their way into the federal court system. Increasingly, cases were decided on whether the plaintiff met the ADA’s definition of disability. Most of the time, the answer was no. People with medical conditions such as cancer, multiple sclerosis, intellectual disability, diabetes, and HIV were determined not to meet the definition of disability. Congress passed the ADA Amendments Act in 2008, which broadened the definition of disability to cover individuals the ADA originally intended to cover, but threats to amend the ADA are continuing today and require ongoing vigilance.

Disability rights activist, Teddy Fitzmaurice. Photo by Tom Olin

In 2017, ADAPT led demonstrations on Capitol Hill to prevent changes to the Affordable Care Act and Medicaid that would have severely impacted the health status and community living of millions of Americans. The changes would have forced many people with disabilities to move into nursing homes rather than receive services in their own home or smaller settings. Senator John McCain cast the vote that defeated the legislation in the U.S. Senate.

The same year, the Supreme Court ruled in favor of the parents of an autistic student, who sued the Douglas County School District for tuition reimbursement for private school because the student was unable to secure an appropriate education in the Douglas County district.

In January 2024, 35 years after the enactment of the Assistive Technology Act, the U.S. Department of Education issued a formal letter and a detailed report reminding educators of their responsibilities under the law (IDEA) to provide alternative and augmentative communications devices and other types of assistive technology as a "related service" in their individualized education plans, to students with disabilities who could benefit from them to enhance their educational outcomes. The need for this reminder speaks volumes about the gap between the law, regulations, and everyday life for students with disabilities.

Advocacy’s Future

The disability rights journey has been exciting, challenging and, at times, distressing. The Disability Rights Movement led and supported legal triumphs in accessibility in housing, employment, education, voting, and other critical aspects of daily life. As we move from court cases and legislation to social justice, with equity and equal opportunity for all individuals with disabilities, the four goals of the ADA are still as relevant as ever, and unfinished: Equality of opportunity. Full Participation. Independent Living. Economic Self-Sufficiency. These goals set high expectations for each person, regardless of the complexity or intensity of needed supports.

Disability rights activist, Tia Nelis. Photo by Tom Olin

Before any federal disability civil rights legislation was enacted, Senator Bob Dole, the first U.S. Senator with a visible disability, used his inaugural speech on the Senate floor in 1969 to provide insight that can still be useful today as the disability community fights for equity in new realms. He emphasized that disability can affect anyone.

“Mr. President, my remarks today concern an exceptional group which I joined on April 14, twenty-four years ago, during World War II,” Dole said, referring to the disability community. “It is a minority group whose existence affects every person in our society and the very fiber of our nation…. As a minority, it has always known exclusions: maybe not exclusion from the front of the bus, but perhaps from even climbing aboard it; maybe not exclusion from pursuing advanced education, but perhaps from experiencing any formal education; maybe not exclusion from day-to-day life itself, but perhaps from an adequate opportunity to develop and contribute to his or her fullest capacity….”

Share these words widely in your pursuit of social justice for all. As Justin Dart, Jr., considered the father of the ADA would say, “Lead on!”