‘Nothing About Us With out Us’: 16 Moments within the Battle for Incapacity Rights

As with every other civil rights movement, the fight for disability rights is one that challenges negative attitudes and pushes back against oppression. But it is also more complex.

Often the movement has diverged into a constellation of single-issue groups that raise awareness of specific disabilities. It has also converged into cross-disability coalitions that increasingly include intersections of race, gender and sexual orientation.

Regardless, the prevailing demands of the movement are the same: justice, equal opportunities and reasonable accommodations.

Though it is difficult to distill modern disability history in one thread, here are a handful of moments that have stood out in the collective memories of disability advocates.


The earliest disability law in the United States dates from pensions guaranteed for men wounded in the Revolutionary War.

“You tend to have a grateful nation that wants to figure out how to help them reincorporate themselves to society,” said Heather Ansley, the associate executive director of government relations for Paralyzed Veterans of America.

By the 1940s, rubella and polio were on the rise, further raising awareness of disabilities.

Summer camps and rehabilitation centers were established to provide nurturing environments. In the 1960s and ’70s, friendships were cultivated among a generation of people who would go on to become some of the foremost activists of the modern civil rights movement.

Ed Roberts was among those top activists. He was the first student who used a wheelchair to attend the University of California, Berkeley. Because there were no accessible dormitories, he lived in Cowell, the campus hospital. He inspired the blueprint for the first Center for Independent Living. There are now 403 C.I.L.s that are run by and for people with disabilities who live independently of nursing homes and other institutions.


Portrayals of disabilities in the mainstream media have often been negative, said Adela Ruiz, a sociology professor at Monroe College. Take villain archetypes: Captain Hook was an amputee, Maleficent used a staff and the main character in the film “Joker” (2019) is depicted as a “mentally ill loner.”

But there was also Ray Charles, who “played a big part of my growing up,” said Leroy Moore Jr.

Mr. Moore noticed a lot of Black disabled musicians — Stevie Wonder, B.B. King, Robert Winters and many more — on album covers as he rummaged through his father’s record collection. Today, he pushes for the representation of disabled musicians as a founder of Krip-Hop Nation.

“Sesame Street” also shed a positive light on disabled people.

“Linda Bove — who’s a fabulous Deaf actor — was playing Linda, the librarian, but there are also other disabled folks and disability topics popping up in ‘Sesame Street’ across the 1970s,” said Susan Burch, a professor who teaches critical disability studies at Middlebury College in Vermont. “That was a big darn deal!”


In 1972, the conditions at the Willowbrook State School, an institution on Staten Island in New York City, set off national outrage when the journalist Geraldo Rivera shared harrowing footage in the documentary “Willowbrook: The Last Great Disgrace.”

“It was like a badly run kennel for humans,” Mr. Rivera said while giving a speech in April 2010. “It was something that shook me to my core.”

Institutionalization and false treatments had been in practice for decades, including at the Hiawatha Asylum for Insane Indians in Canton, S.D., which closed in 1933.

“It wasn’t like, ‘Oh, this is the place where we’re going to treat mental illness,’” said Jen Deerinwater, founding executive director of Crushing Colonialism and a citizen of the Cherokee Nation of Oklahoma. “It was, ‘We’re going to round up a bunch of Natives and throw them in this asylum and just traumatize them.’”

A video that surfaced in 2012 showed the staff of the Judge Rotenberg Educational Center in Canton, Mass., using electric shock on Andre McCollins, an autistic resident, 31 times over seven hours because he would not remove his jacket.

“They started with other forms of what they call ‘aversive punishment,’ like slapping people, pinching them; tying them down for hours at a time, subjecting them to forcible inhalation of ammonia,” said Lydia X. Z. Brown, an autistic advocate and attorney who maintains an archive of the center’s abuses.

The Food and Drug Administration announced a ban on the center’s shock devices earlier this year, but it has not gone into effect, evidence that an era of deinstitutionalization is far from over.


The Education for All Handicapped Children Act (now the Individuals With Disabilities Education Act), enacted in 1975, required federally funded public schools to provide equal access to education and one free meal a day to children with disabilities.

The law was passed after parents filed a number of lawsuits that referred to the landmark Brown v. Board of Education ruling.

Legislators have also used the education law as a model for other disability laws.

“If you don’t have an education, we can’t get you to get a job; we can’t have you participate in society. If you don’t have transportation, you can’t get back and forth to your job,” said Pat Wright, a disability rights activist who co-founded the Disability Rights Education and Defense Fund. “So each one of those things that nondisabled kids take for granted become the linchpin of people with disabilities’ lives.”


On April 5, 1977, demonstrators marched outside government buildings in San Francisco and several other cities across the nation. Their demand: Sign the regulations enforcing Section 504 of the Rehabilitation Act of 1973. This provision, which had been modeled after the Civil Rights Act of 1964, prohibited recipients of federal aid from discriminating against anyone with a disability. The federal Department of Health, Education and Welfare had been tasked with writing the regulations and implementing Section 504, but it still had not been enacted four years later.

The San Francisco contingent of more than 100 people entered H.E.W.’s offices and stayed for weeks.

“It was kind of like a crescendo,” said Judy Heumann, who led the demonstration. “Like, ‘if we leave, we’ll never get back in.’”

About two dozen of the demonstrators were chosen to make their case in Washington, where they found success — the regulations were signed on April 28, 1977. It’s now considered a precursor to the A.D.A.


On July 5, 1978, a group of 19 people gathered at one of the busiest intersections in Denver, at Colfax Avenue and Broadway, got out of their wheelchairs and lay down to stop traffic. Their goal was to protest the inaccessibility of the city’s public transit system.

The group had been pushing the city to install wheelchair lifts, and when a new fleet of buses was released without them, they were angry. The protest ultimately led to the creation of the Americans Disabled for Accessible Public Transit (now the American Disabled for Attendant Programs Today), in 1983, which quickly expanded with chapters all around the country. The group then pushed for transportation provisions to be added to the A.D.A.


In 1982, the parents of a baby with Down syndrome in Bloomington, Ind., were advised by doctors to decline surgery to treat the baby’s blocked esophagus. Disability rights activists tried to intervene, but Baby Doe, as he came to be known, starved to death before legal action could be taken.

Dr. C. Everett Koop, the surgeon general of the United States at the time, said the boy was denied food and water not because the treatment was unreasonably risky, but because the baby was intellectually disabled, a decision he did not agree with.

In 1983, another case surfaced on Long Island that came to be known as Baby Jane Doe. The baby was born with an open spinal column; her parents opted against surgery, even though it could have prolonged her life.

The Reagan administration called for the creation of “Baby Doe squads” in which government officials, including child-protective service agents, went to hospitals to inspect reports of discrimination of newborns with illnesses.

“At a time of maximum stress for parents, the squads descended on hospitals and interfered with the roles of parents, physicians, infant care review committees, hospitals and state authorities,” James H. Sammons, the executive vice president of the American Medical Association, wrote in an op-ed for The Washington Post in 1985.

The issues raised by both cases ultimately led to the 1984 passage of the Baby Doe Amendment to the Child Abuse Law, which established guidelines for treating newborns with illnesses.


On March 6, 1988, Gallaudet University in Washington, a liberal arts college for Deaf people, appointed a president who was not Deaf.

The university had, in fact, never had a Deaf president. This set off a student protest that came to be known as Deaf President Now.

It was an important moment in Deaf civil rights history because it “in some ways, led to contestations over what it means to be deaf and questions of belonging within deaf spaces,” Dr. Octavian Robinson, a historian and disability studies scholar, wrote in an email.

After several days, the university named I. King Jordan its first Deaf president.


In the months before the A.D.A. was signed into law by President George H.W. Bush on July 26, 1990, it was stalled in Congress.

“All the i’s have been dotted and all the t’s have been crossed,” Rep. Major R. Owens, a primary backer of the A.D.A., said of the law at the time. “There have been enough negotiations — delay is the real enemy.”

On March 12, hundreds of demonstrators on the National Mall abandoned their wheelchairs and crutches and began crawling up the marble steps to the west Capitol entrance. The Capitol Crawl, as the event came to be known, underscored the injustices of inaccessibility that the A.D.A.’s “reasonable accommodations” clause was intended to fix.

Many of the protesters were arrested, including Anita Cameron, who said she had been arrested 139 times in her fight for disability rights.

“I think on that day and at that time, more people learned about disability discrimination and equal opportunity than we can imagine,” said Lex Frieden, a disability policy expert who helped shape the A.D.A.


In 1993, Jim Sinclair, one of the founders of Autism Network International, spoke at the International Conference on Autism in Toronto, focusing on a sentiment that was often expressed by parents of autistic children — a sense of “loss” upon learning their child wasn’t “normal.”

“You didn’t lose a child to autism,” said Jim, who prefers not to use gendered pronouns or honorifics. “You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden.”

“Grieve if you must, for your own lost dreams,” Jim added. “But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”

The speech became a foundation for what has become known as the neurodiversity movement, a belief that cognitive differences are part of normal variations of human behavior.

“Neurodiversity affirms that everyone deserves to be accepted and included for who they are,” Sharon daVanport, the founding executive director of the Autistic Women & Nonbinary Network, wrote in an email.


In the 1990s, debates surrounding assisted suicide and Dr. Jack Kevorkian’s campaign to assist terminally ill people to end their lives unfurled on the national stage.

The discourse led to the founding of the disability rights group Not Dead Yet.

Tucked into the polarizing conversation was an assumption that people “don’t want to be disabled, that they feel that being disabled is undignified,” said Ms. Cameron, the director of minority outreach for Not Dead Yet. “And as a person with disabilities, I totally resent that.”

Many advocates link assisted suicide to the eugenics movements of the 1800s — which pushed for “undesirable” traits to be bred out of the gene pool — and the Buck v. Bell decision, which allowed doctors to sterilize “mental defectives” without their consent because, as Justice Oliver Wendell Holmes Jr. famously wrote, “three generations of imbeciles are enough.” The ruling still stands.

“It comes back to that fundamental belief that some people are actually more valuable than other people,” Ms. Burch said, “and that’s core to how ableism functions.”


This Supreme Court ruling played a major role in categorizing mental illness as a disability under the A.D.A.

The case involved Lois Curtis and Elaine Wilson, two women with mental and intellectual disabilities who had been treated in Georgia hospitals but were held in institutions for years, caught in a bureaucratic limbo as they waited for placements in community-based facilities.

The case against Tommy Olmstead, who was the commissioner of the Georgia Department of Human Resources, was filed in 1995 and made its way up to the Supreme Court. In 1999, the court ruled that unjustified segregation of people with disabilities constituted discrimination that violated the A.D.A.


Disability pride parades are now held in several cities around the nation, challenging society’s stigma of disability while celebrating disabilities as a form of diversity. The first such parade was held in 1990 in Massachusetts, but the events became more regular after Chicago held its first parade in 2004.

“My fibromyalgia-slow-cane-using body is not something I’m going to hate,” said Leah Lakshmi Piepzna-Samarasinha, the author of “Care Work: Dreaming Disability Justice.” “I’m not just this symbol of brokenness — I’m a place of power.”

But some who are still in the throes of advocacy have found pride to be a complicated term to embrace because there is more work to be done.

“Pride is tricky,” said Eli Clare, a writer and activist who was the Chicago parade’s grand marshal in 2010. “Pride often only comes to us after we have some community and after we have some politicized framework around who we are.”


In 2006, the National Federation of the Blind filed a class-action suit against Target Corporation saying that the company’s website was not accessible.

“Is sexism OK online? Is racism OK online?” asked Haben Girma, a disability rights lawyer who works closely with technology and policy. “Most people would answer with an immediate no. I want our society to get to the point where if one asks, ‘Is ableism OK online?’ the answer is an immediate no.”

The court held that the A.D.A. applies to websites that have a connection to a physical place of public accommodation, and that Target must modify its website.

Amid the coronavirus pandemic, as social distancing and remote work have made the internet indispensable, tech accessibility has become even more critical.

“Schools, health agencies, and hospitals have been posting videos without captions,” Ms. Girma said. “Images with critical health information, figures and charts, lack image descriptions for blind people.”


About 30 to 50 percent of all people killed by law enforcement officers are disabled, according to a study by the Ruderman Family Foundation. As tensions heightened in 2014 alongside the rise of Black Lives Matter, this statistic became especially apparent.

Disability was overlooked in news reports of the deaths of Sandra Bland, Eric Garner, Freddie Gray and many others, said Cyrée Jarelle Johnson, a Black disabled poet and librarian. Instead the term “underlying conditions” was used to refer to depression, asthma and high blood pressure — “a euphemism that is bent to make people feel like they’re not murdering disabled people.”

Mx. Deerinwater, of Crushing Colonialism, pointed out an even more stark statistic.

“The C.D.C. actually says that Native people have the highest rates per capita of police brutality,” Mx. Deerinwater said. “I want to say that ‘per capita’ piece is always crucial when we talk about any issue related to Natives because we’re a little less than 2 percent of the U.S. population.”

Confrontations with the police present a real concern for people like Vilissa Thompson, a social worker and the founder of the blog Ramp Your Voice!

“I’m someone who’s hard of hearing and if I cannot hear a command that’s given to me by law enforcement, that can make me appear to be noncompliant,” she said.


Throughout the disability rights movement, the merging of communities has been the driving force behind major changes.

Organizations like the Harriet Tubman Collective and Sins Invalid have created space for art and collective liberation.

“Disability justice is about political organizing and legal change and all of that,” Ms. Piepzna-Samarasinha said, “but it’s also about creating communities where we can be all of ourselves without shame, and with joy.”

In 2016, the #CripTheVote Twitter campaign was created by Alice Wong, the founder of the Disability Visibility Project; Andrew Pulrang, a contributing writer for Forbes.com; and Gregg Beratan, the director of advocacy at the Center for Disability Rights.

In the past four years, they have organized 64 Twitter chats or live-tweets of events, which are all archived.

“As with most branches of disability culture,” Mr. Pulrang said, “it also helps disabled people discover that they are not alone, and that their experiences are usually not unique or strange.”

People of color and L.G.B.T.Q. voices have asserted themselves in the movement, raising awareness with hashtags like #DisabilityTooWhite.

“To me, disability justice means that we’re taking into account people of color, and people that are marginalized within the disability community,” said Mr. Moore, the founder of Krip-Hop Nation, adding, “we’re taking these principles and really living by them, not only in organizations but in our own lives.”

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