The cosmologist Carl Sagan said, “You have to know the past to understand the present.”1 Even though this might be your first time learning about disability history, there is a long legacy of disability activism. None of this work exists in a vacuum, and I’m grateful for the disability activists who paved the way for me and those who will come after.
As a brief history, I encourage you to use the information laid out in this chapter as a catalyst to dive into areas that are of interest to you. Professor Kim E. Nielsen’s book A Disability History of the United States could be a great place to start.
I first started learning more about disability history in 2015 around the twenty-fifth anniversary of the ADA. I was living in New York City when the mayor proclaimed July Disability Pride Month, and the city was celebrating its first Disability Pride Parade. Even in the process of researching for this chapter, I learned a few things!
So how did it all start?
In the ancient world, disability was viewed through the lens of superstition and religious beliefs. In some religious cultures like Christianity, it was seen as a manifestation of the divine, but it was viewed mostly as a curse or punishment from a god. During the periods of the Greek and Roman empires, which valued human perfection, disability was seen as inferior, undesirable, and disposable. Roman fathers were responsible for deciding whether a disabled child would live or die, and the child was often abandoned in the woods. In Sparta, the child was the property of the state, and abandonment of a disabled child was required by law.2
From the Middle Ages through the Renaissance, around 1000 to 1700, disability continued to be shunned as the devil’s work or punishment for a parent’s, and eventually the grown child’s, sins. During this period of social and economic hardship, families couldn’t afford to care for disabled family members—or they simply didn’t know how to—and disabled people were evicted and often became beggars or were hidden out of public spaces. In 1247, Europe’s first mental health hospital, Bethlem Royal, was founded in Britain, later gaining notoriety for its brutal “treatments” of disabled patients, such as bleeding and cold-water therapy,3 that were a mix of punishment and religious devotion, and for its use of “chains, manacles, locks, and stocks.”4 Owing to the rise of witch hunts during the 1600s, many disabled people were also accused of witchcraft and sorcery.5
By the 1700s, the start of the Industrial Revolution, disability was commonplace. Long hours in horrible working conditions and a lack of workplace safety regulations, combined with a rise in population and poor medical facilities—as well as wars—left many disabled.6 Technological advancement also exacerbated social inequities and increased poverty. Into the 1800s, disabled people continued to be scorned and cast off. As the number of people experiencing homelessness grew in cities, new policies were enacted to address the “problem.” Cities began the practice of “warning out” disabled people, which meant telling them that they were no longer welcome. Disabled people were also loaded onto carts and dropped off at the next town.7 In addition to forced displacement, disabled people were locked away in poorhouses or jails.
The 1800s also saw the first emergence of disability rights in the United States. Formal education for the Deaf community began when oral and manual schools were created in the early 1800s.8 Oralism and manualism are two methods of teaching Deaf people to communicate, with oralism using speech and lipreading, and manualism using American Sign Language (ASL). Around the mid-1800s, nurse and advocate Dorothea Dix visited jails, poorhouses, and asylums across the United States and observed appalling conditions where disabled people lived.9 Dix appealed to Congress to set aside land to accommodate disabled people, paving the way for the first publicly funded state institutions in the United States for people with disabilities. This was a turning point in promoting the belief that the US government had a responsibility to care for its disabled citizens.
Unfortunately, history would show that institutionalization was not an ideal solution. Like Bethlem Royal Hospital six hundred years before, these institutions had poor and overcrowded living conditions. Instead of providing care and rehabilitation, they abused and neglected the disabled residents, adopting cruel treatment methods that resembled torture, imposing isolation, and even using the residents as free labor. Additionally, institutionalization took away the choice and agency of disabled people, leaving them in the hands of their family members and doctors. Nevertheless, institutionalization became a widespread practice, keeping hundreds of thousands of disabled people segregated from the rest of the population in a practice known as “warehousing.”10 Meanwhile, outside institutions, “ugly laws” in certain cities banned disabled people who were “diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object” from showing themselves in public.11 Ironically, disabled people with “disfigured, disabled, or exaggerated bodies” were displayed as “oddities” in county fairs for the enjoyment of spectators.12
The early 1900s saw the rise of eugenics, “the science of the improvement of the human race by better breeding,”13 according to Charles Davenport, a central figure of the movement in America. The belief was that certain “undesirable” human conditions like “feeblemindedness,” epilepsy, and insanity were hereditary and should therefore be “bred out.” Disabled people were on the front line of this attack, with seventy thousand disabled people in the United States undergoing forced sterilization without their consent after a 1927 Supreme Court ruling, Buck v. Bell, which states that governments have the right to forcibly sterilize people with disabilities.14 Despite certain limitations, the ruling is still in place today. Most famously, the eugenics movement made its way to Nazi Germany, where disabled people made up one of the many groups targeted by Hitler in his campaign for racial purity. In 1933, people with what were believed to be “hereditary” conditions had to undergo compulsory sterilization. Hitler decided that the next step was to kill babies with congenital disabilities and later disabled adults. In total, the Nazi program Aktion T4 carried out the murder of 300,000 disabled people.15
After World Wars I and II, disabled veterans pressured the government to provide them with rehabilitation and vocational training as a way to thank and honor those who had sacrificed their lives and health for the country since they could no longer serve in the military. In the 1930s, economic growth, increased government assistance, and advancements in technology and medical care helped to bring disabled people closer to self-reliance. However, there was still a lack of accessibility in public spaces.16 Significantly, in 1938, the Fair Labor Standards Act (FLSA) passed, with Section 14(c) legally allowing employers to pay disabled employees lower wages due to what was seen as limited productivity.17 This was originally meant to incentivize employers to hire disabled people, but it resulted in unfair wages. As of February 2024, twelve states have phased out Section 14(c), and five states are in the process of doing so.18
By the Civil Rights Movement in the 1960s, disability rights advocates had joined forces with other minoritized groups to demand equal rights, treatment, access, and opportunities. Parent advocates were a big part of the disability rights movement, calling for their disabled children to be removed from segregated institutions and enrolled in schools where they could learn alongside other, non-disabled children.19 When the Civil Rights Act passed in 1964, it protected against discrimination based on race, color, religion, sex, and national origin, leaving disability out of the picture despite the efforts of advocates. This exclusion pushed activists to call for laws specific to disability rights, which eventually led to the Rehabilitation Act of 1973 (Section 504), where, for the first time in US history, the civil rights of disabled people were protected by law. The law prevented disabled people from being discriminated against in federally funded programs, such as hospitals, public schools and universities, and public transit systems, and it also mandated equal access to public services. Crucially, this law focused on fixing the environment as opposed to fixing the individual.20 Previously, for example, schools and libraries had been “available” to the public but not accessible to disabled people.21 The law was signed in 1973 but was delayed due to the enormous financial costs it required of the government, such as updating public buildings to meet the new standards. Disability activists, including Judy Heumann, Kitty Cone, Brad Lomax, Mary Jane Owen, Corbett O’Toole, and Hale Zukas, wrote letters and lobbied lawmakers, and in 1977, they organized sit-ins, including a twenty-six-day action at the San Francisco federal building known as the “504 Sit-In,” the longest non-violent civilian occupation of a federal building in US history.22 That finally got the program moving.
Riding the momentum of this win, disability rights activists continued to organize and protest, fighting to represent and speak for themselves. In 1983, the World Institute on Disability was founded by Judy Heumann, Ed Roberts, and Joan Leon. It was one of the first international disability rights organizations led by people with disabilities. Judy Heumann, known as the “mother of the disability rights movement,” was the first wheelchair user to become a New York teacher. She sued the New York Board of Education in 1970 at the age of twenty-two after she was failed on her mandatory medical exam because she could not walk.23 And Ed Roberts, known as the “father of the independent living movement,” successfully sued the state of California after the University of California, Berkeley, tried to reverse his acceptance after realizing that he was quadriplegic because it was unprepared to accommodate his needs. He became its first student to use a wheelchair.24 Roberts went on to organize the first disability-led student organization in the United States, advocating for accessibility on campus, which later inspired him to found the country’s first independent living community. In his words, “No longer would we tolerate being spoken for.”25 In 1988, a weeklong student protest at Gallaudet University, a university for Deaf and hard-of-hearing students, led to the election of the first Deaf university president.26 On a national level, activists fought for specific laws like the Voting Accessibility for the Elderly and Handicapped Act of 1984, requiring accommodations for disabled people during elections, and the Air Carrier Access Act of 1986, prohibiting discrimination against disabled people by airlines, among others.27 However, what was still missing was a wide-reaching and broad civil rights law that would protect the rights of disabled people in the United States.
In the 1980s, disability rights activist Justin Dart Jr. traveled extensively to collect stories about the injustices that disabled people faced. His ultimate goal was to create legislation that would address discrimination against disabled people in the United States.28 Iowa senator Tom Harkin took this information and worked with other prominent leaders to author the ADA in 1990, thirteen years after Section 504 had paved the way. Dart is widely recognized as the “father” of the ADA. Businesses that disliked the new accessibility requirements lobbied against the bill. At one point, over a thousand disabled people gathered in Washington, DC, to protest, including an action known as the Capitol Crawl when protesters left behind their wheelchairs and crutches and crawled up the steps of the Capitol.29 This protest was intended to be a physical demonstration of how inaccessible architecture impacted people with disabilities, forcing Congress to see disabled people. The late Michael Winter, who participated, said, “Some people may have thought it was undignified for people in wheelchairs to crawl in that manner, but I felt that it was necessary to show the country what kinds of things people with disabilities have to face on a day-to-day basis. We had to be willing to fight for what we believed in.”30
The ADA passed four months later on July 26, 1990.
Today, the ADA extends protections to all private institutions and workplaces, ensuring “the equal treatment and equal access of people with disabilities to employment opportunities and to public accommodations,” and intends to “prohibit discrimination on the basis of disability in: employment, services rendered by state and local governments, places of public accommodation, transportation, and telecommunications services.”31 This means providing accessibility in public services and infrastructure, such as ramps, elevators, automatic doors, handrails, and captions on TV and streaming services, which are accommodations that both disabled and non-disabled people benefit from. It also means mandating that private businesses and public services accommodate disabled employees, clients, and customers. Essentially, the ADA is landmark legislation because it mandates the “full participation, inclusion, and integration of people with disabilities in all levels of society.”32
However, as you’ll hear many advocates say, the ADA should be the floor, not the ceiling, of the disability rights movement. It is often poorly and inconsistently enforced across states, with multiple violations across the country.33 While there are fines for non-compliance of up to $75,000 for a single ADA violation and $150,000 for additional violations, there are exceptions and exemptions, and many disabled people lack the time and energy to fight for our rights. Prejudice and bias against disabled people still exist within families, in media representation, and elsewhere. Enforcing laws is one thing; changing attitudes is another and is necessary to create lasting change.
In 2006, the United Nations (UN) adopted the Convention on the Rights of Persons with Disabilities (CRPD), the first legally binding instrument to address the rights of disabled people at the global level.34 This was born out of a desire to shift from “viewing persons with disabilities as ‘objects’ of charity, medical treatment, and social protection toward viewing persons with disabilities as ‘subjects’ with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.”35
The passage of the Affordable Care Act (ACA) in the United States on March 23, 2010, was also significant because it improved access to health care for people with disabilities and chronic conditions and addressed disability discrimination. Because of the ACA, young adults can stay on their parents’ insurance until age twenty-six, and insurance companies can’t deny coverage or charge higher premiums to those with pre-existing conditions or comorbidities.36
I’ve been honored to meet some of the notable figures mentioned in this chapter, including the late Judy Heumann and Senator Tom Harkin, as well as many other pioneering advocates whom I hope you will read about in history books to come. I’ve also been learning about the ways that disability has been downplayed in history and erased from historical figures, such as Mexican artist Frida Kahlo, who developed polio as a child and acquired physical disabilities from a bus accident when she was eighteen;37 President Franklin D. Roosevelt, who also had polio; and Harriet Tubman, who developed epilepsy. This erasure of their disabilities makes their stories incomplete. It now falls upon our generation to remember and honor those who have come before us and to continue on the path they’ve laid out.
Where do we go from here? In the modern era of the disability rights movement, we are still trying to combat negative biases against disability. Newer terms like ableism are at the forefront of our conversations, and notions like disability intersectionality and disability pride—as well as movements like disability justice, which emerged in 2005 from a group of disabled activists of color called Sins Invalid that included Patty Berne, Mia Mingus, and Stacey Park Milbern and which we will learn more about in later chapters—give us valuable context and expand on our centuries-long fight for inclusivity and equity. The American Association of People with Disabilities (AAPD) highlights a few advocacy areas we can focus on: community integration, health care, employment, and political participation.38 I share more strategies later, in the Anti-Ableism and Societal Change section.
We must also remember to let disabled people lead the way. Haben Girma, a disability rights lawyer, author, and speaker—and the first Deafblind person to graduate from Harvard Law School—reminds us, “The disability community is diverse, full of rich stories of talented people improving their communities.… It touches all of our lives.”39
We are long overdue to be living in a time when our doctors, family members, and government authorities no longer make decisions for us. It is time to reclaim our stories. We have the agency and dignity.