Understanding the American Disability Rights Movement

When most people think of civil rights movements in the United States, they think of THE civil rights movement, and the fight for women's suffrage, feminism, and probably also the LGBT movement. However, very few immediately think of or even know about the disability rights movement and how it still persists today. Despite being the largest minority group in the United States and making up 20% of the US population, people rarely think of disabled people when they think of persecuted minorities, or even when they think of minority groups at all. So, Let's quickly go over the disability rights movement and then finish on why it's relevant today. Firstly, we have to understand the models of disability, mainly the moral, medical, and social models. A model of disability is a societal understanding of what disability is and how society should respond to disabled people. Each model of disability is still around somewhat today, but they are largely tied to specific time periods, which provides a nice way of framing the disability rights movement throughout modern history. Let's go over the models first. The moral model of disability frames that disabled people are an act of God. For an example, the moral model of disability is seen traditionally in very religious households, believing that the disability is either the result of sin on the parent's part, and thus should be shunned, or as a trial that God is placing on the disabled person or their family, and thus should be cared for in order to receive blessings. The medical model of disability frames disabled people as victims of circumstance, to be pitied, treated, and cured. Given that largely disability today is seen through the lens of the medical model, we can look for examples in the common search-for-a-cure marathons and charities set up to treat and develop a cure for a certain disability. The social model of disability frames disability as a problem of society and pushes to change society for the betterment of disabled people. The social model is beginning to gain hold in the U.S. and is traditionally associated with disabled activists. For an example of the social model in action, think of disabled people that use wheelchairs. The social model would say that a person needing a wheelchair doesn't make someone disabled unless society is built in such a way that the person with a wheelchair is inhibited. Shaping society where a person in a wheelchair can easily access every location a person without one can. thus eliminates the disabling factors of the disability. Think of the models of disability like this. The moral model at its best seeks to pity and care for the disabled person as a community. The medical model at its best seeks to treat and cure all disability, and the social model at its best seeks to change society to create equal access for the full participation of disabled people. We need to understand the models of disability because they give us a nice framework of how society's view of disability has changed over the past 250 years. Let's start with the moral model in U.S. history. I'm going full U.S. centric partly because the disability rights movement itself is deeply tied to U.S. history and also because going into the disability rights movement throughout the world would make this thing far too long. Let's first start with Dorothy Dix, an early disabled activist. In the 1840s, she set out to conduct statewide investigations of care for mentally disabled people. She saw how mistreated the mentally disabled were in hospitals and how even local communities that had designated individuals to care for mentally disabled people could not uphold their duties. After publishing a report condemning treatment of disabled people in Massachusetts, her lobbying resulted in statewide action. Although she, and others like her, truly did care about disabled people, her action manifested itself in legislation into the creation of the first residential institutions for people with disabilities in the U.S. At first, these institutions were set up to house disabled people who were homeless, charged with crimes, or needed care that their families or communities couldn't provide. Unfortunately, due to underfunding and lack of oversight, These institutions quickly became breeding grounds for abuse of disabled people and a way for society to lock disabled people out of the public eye. Additional efforts to keep disabled people out of the public were the so-called ugly laws, which prohibited anyone unsightly or physically disabled from appearing in public or working a job, unless the job displayed their disability for profit. This led to an increase in the amount of not only mentally but physically disabled people institutionalized, and the ugly laws pushed disabled people towards the only work they had available. the circus, or the freak show. While institutionalization was occurring from the 1840s to the 1980s, there was a growing movement focusing on science, shifting the U.S. from the moral model to the medical model. This was called the eugenics movement. You might have noticed somewhere that this seems nothing like the moral model, which it isn't exactly. Originally, institutionalization, as awful as it was, was a way for communities and families to care for the disabled people, but as time went on and society shifted, the moral model lost its grasp and the medical model took hold. Instead of caring for disabled people being the justification for institutionalization, the eugenics movement shifted the justification to science says we need to advance the human race and allowing disabled people to breed will degenerate the human gene pool. Starting in the 1880s, the eugenics movement had nowhere close to the amount of stigma it has today. Claiming that it based itself in science, the eugenics movement was just what society needed to fully shift to the medical model. But wait, the medical model seeks to treat and cure disability. How is the eugenics movement like that? Well, eugenics wasn't just killing disabled people at first. At the beginning, in the late 1800s, the push was for as many people as possible to be institutionalized so that they are kept off the streets from spreading their genes with one another. Once the technology was available, forced sterilization occurred in the 1920s. Eventually, forced lobotomization was enacted, and the eugenics movement reached its peak in the 1940s when it was taken to its natural end by Nazi Germany. Okay, but what does this have to do with disability rights? Well, this is setting the stage, firstly showing that disabled people were absolutely an incredibly marginalized community, and secondly that almost every institution in the world was attempting to, at best, lock them away, and at worst, kill them. Never did disabled people have the chance to speak for themselves on the world stage until the late 1900s. This leads us right to the beginning of the disability rights movement in the 1950s. As the civil rights movement was occurring across America, changes started being enacted federally and locally in the direction of disability rights, and with the inspiration from the civil rights movement and changes in their favor, disabled people embraced the social model to push for change. Social security was amended to care for workers who were disabled and aid permanently disabled people. Some cities enacted programs to provide at-home attendant care. Deinstitutionalization slowly began from activists exposing the abusive conditions at the facilities and research centers to aid developmentally disabled people were funded federally in the 1950s. These slow chips away at the system paved the way for activists to enter from all walks of life. Ed Roberts successfully sued UC Berkeley to become the first student with severe disabilities to attend the school in 1962. Ed Roberts went on to lead a number of efforts, the most impactful of which being his founding of the Center for Independent Living in 1972. which created the Independent Living Movement. This movement fought for deinstitutionalization and reforms to the way society views disability, seeking to allow disabled people to lead their own lives independently. Roberts was appointed director of the California Department of Vocational Rehabilitation in 1976, an agency that had previously labeled him too disabled to work. After leaving in 1983, Roberts returned to Berkeley to form the World Institute on Disability with Judy Heumann and Joan Leon. Remember Judy for later. Let's go back to the 60s again. In 1965, Medicare and Medicaid were established, changing the care of disabled people from just those permanently disabled to those disabled for a period of longer than 12 months. Voting protections for disabled people were passed, and many states had started passing bills to fund research facilities for disabled people. By the 1970s, lobotomy had been banned in several states, the Fair Labor Standards Act was amended to allow people with disabilities into sheltered workshops, demonstrations were held to protest Nixon's vetoing of the Rehabilitation Act, several states ended their sterilization program, and sweeping laws that would change the landscape of disability in America were passed. The first of these was the Rehabilitation Act of 1973. Though Nixon had vetoed the bill previously, he did eventually sign it a year later. The bill would bar employment discrimination from the federal government, prohibit discrimination from any program receiving federal funding, and redefined what a handicapped individual was, changing it from, quote, a physical or mental disability which results in a substantial handicap to employment and can reasonably be expected to benefit in terms of employability from vocational rehabilitation services to, quote, a physical or mental impairment which substantially limits one or more of such person's major life activities, has a record of such impairment, or is regarded as having such an impairment. This might sound like a small change, but it shaped the way disability was seen from the government forever. A, quote, substantial handicap to employment is vague and narrow in terms of defining a disability, whereas, quote, limits to one major life activity or is regarded as having such an impairment is extremely broad. and thus protects even disabled people that do not consider themselves as having a disability. This road wasn't easy, however. To get the Rehabilitation Act passed, disabled activists led by Judy Heumann, remember her, protested the veto by stopping traffic on Madison Avenue in New York City, flooding letters and protest calls, and marching in protest. They called and mailed their representatives and made their voices heard, and the bill was passed. But that was the least of their worries. Once it was passed in 1973, Section 504 of the Act The section that actually defined disability and placed regulations needed to be signed by the Secretary of Health, Education, and Welfare, or Secretary of HEW. These regulations were not signed until 1977. After Nixon signed the act, and Gerald Ford's Secretary of HEW didn't sign the regulations, and then Carter's Secretary of HEW was delaying the signing, enough was enough, and disabled activists engaged in national protests now known as the 504 sit-in. Led by Judy Heumann and Frank- Bow, sit-ins by disabled protesters occurred at the HEW buildings in Atlanta, Boston, Chicago, Denver, Los Angeles, New York City, Philadelphia, Seattle, Washington, D.C., and the most noteworthy in San Francisco. At the San Francisco sit-in, Judy Heumann and 150 other disability activists engaged in the longest sit-in at a federal building to date. For 25 days, they occupied the building until Joseph Califano, President Carter's Secretary of HEW, signed the regulations. Though it took more than five years, they had their voices heard and achieved a major victory for disability rights. The disability rights movement wasn't over yet. There was still a lot to do. Still in the 1970s, protesting led to the final ugly law being repealed. Independent living centers were established in many cities, the first demonstrations for wheelchair-accessible public transportation occurred, compulsory sterilization was all but finished, though sterilization itself was not gone yet, and the Supreme Court ruled in favor of a number of disability rights cases. On to the 80s, rules against sterilization started passing, the Americans Disabled for Accessible Public Transit, ADAPT, was founded, the Mental Illness Bill of Rights Act required states to provide protection for people with psychological disabilities, Widespread ADAPT protests saw legislation in the direction of accessibility and public transport, and in 1989, the original version of the Americans with Disabilities Act was introduced. This leads us up right to 1990, where the redrafted Americans with Disabilities Act was passed and signed by President George W. Bush. I've mentioned a lot of things that have happened, but I haven't really touched on how they happened. With the ADA being redrafted, discussed, and talked about, but not passed, Disabled activists realized that they could have another Section 504 on their hands. Not wanting to wait five years, they protested in an extravagant fashion. Organizing marches and demonstrations in DC and a number of other cities, the disabled activists realized they needed an attention getter, one that would get news stations to cover their movement. Their idea is what is now known as the Capitol Crawl, or, quote, the single most important catalyst for the passage of the ADA. Leaving behind their walkers, wheelchairs, crutches, and other mobility assistance devices, the disabled activists crawled up the 83 steps that lead to the Capitol. Children and the elderly alike participated in the crawl. While reporters captured their struggle to make their way up the steps that thousands do every day with ease, this demonstration came alongside protests involving thousands of people, and the ADA was passed. One more quick thing I should mention here is that the passage of the ADA was not a partisan issue. The legislation was supported by Democrats and Republicans alike, and was supported and signed into law by Republican President George W. Bush. Where was the pushback from? Religious groups and large business interests opposed the legislation for fear that installing accommodations would be too costly and could harm churches or business. Despite this, the ADA passed 76-8 in the Senate and passed unanimously in the House. How did a few thousand disability activists with little monetary lobbying power manage to convince legislators to vote in their favor? Part of this is the fact that disabled people are the largest minority group, and there were many senators and representatives that knew or had loved ones that were disabled. Famously, Ted Kennedy spoke of his sister's condition and his son's lost leg on the Senate floor. However, sympathetic senators can't be the only reason for the disability rights movement's success. Certainly the 504 sit-in changed history by sparking Califano to sign the regulations, and certainly the Capitol crawl and the numerous protests sparked the passage of the ADA. So, disabled activists didn't quite have money on their side, but they did have activism and persistence. So now the question remains, why is this important today? In case you haven't noticed, the Trump administration has sparked a new wave of the disability rights movement. Attempting to cut Medicare and the ACA, as well as attempting to provide protections to businesses over workers, threatens the rights disabled people fought for and gained over 30 years ago. Why is it that the Rehabilitation Act, Section 504, and even the ADA were passed with both Democratic and Republican support, yet now these rights are threatened? Unfortunately, just like it took activism to gain the rights, it takes consistent activism to maintain them. Going into all the reasons behind the various shifts the U.S. has had since 1990 would make this thing too long, but there is one thing to be certain of. No rights are ever safe. The civil rights movement did not end with the passage of the Civil Rights Act in 1968. It still lives on today in the fight against police brutality and discrimination. The feminist movement didn't end with women achieving the right to vote, nor will it with women achieving fully equal workplaces. The disability rights movement did not end with the ADA in 1990, though unfortunately many of the activists stopped fighting. The social model of disability is still not the most pervasive model seen today, but it does provide us a good framework to work from. No fight for civil rights is ever over. Just as rights can be gained, they can be lost. Never stop fighting, even when the law has been amended. Activism does not stop with a changed law, it stops with a changed public, when the activism is so ingrained in each and every person. that it is no longer needed.

So, Let's quickly go over the disability rights movement and then finish on why it's relevant today. Firstly, we have to understand the models of disability, mainly the moral, medical, and social models. A model of disability is a societal understanding of what disability is and how society should respond to disabled people.

Each model of disability is still around somewhat today, but they are largely tied to specific time periods, which provides a nice way of framing the disability rights movement throughout modern history. Let's go over the models first. The moral model of disability frames that disabled people are an act of God.

For an example, the moral model of disability is seen traditionally in very religious households, believing that the disability is either the result of sin on the parent's part, and thus should be shunned, or as a trial that God is placing on the disabled person or their family, and thus should be cared for in order to receive blessings. The medical model of disability frames disabled people as victims of circumstance, to be pitied, treated, and cured. Given that largely disability today is seen through the lens of the medical model, we can look for examples in the common search-for-a-cure marathons and charities set up to treat and develop a cure for a certain disability.

The social model of disability frames disability as a problem of society and pushes to change society for the betterment of disabled people. The social model is beginning to gain hold in the U.S. and is traditionally associated with disabled activists. For an example of the social model in action, think of disabled people that use wheelchairs.

The social model would say that a person needing a wheelchair doesn't make someone disabled unless society is built in such a way that the person with a wheelchair is inhibited. Shaping society where a person in a wheelchair can easily access every location a person without one can. thus eliminates the disabling factors of the disability. Think of the models of disability like this.

The moral model at its best seeks to pity and care for the disabled person as a community. The medical model at its best seeks to treat and cure all disability, and the social model at its best seeks to change society to create equal access for the full participation of disabled people. We need to understand the models of disability because they give us a nice framework of how society's view of disability has changed over the past 250 years. Let's start with the moral model in U.S. history. I'm going full U.S. centric partly because the disability rights movement itself is deeply tied to U.S. history and also because going into the disability rights movement throughout the world would make this thing far too long.

Let's first start with Dorothy Dix, an early disabled activist. In the 1840s, she set out to conduct statewide investigations of care for mentally disabled people. She saw how mistreated the mentally disabled were in hospitals and how even local communities that had designated individuals to care for mentally disabled people could not uphold their duties. After publishing a report condemning treatment of disabled people in Massachusetts, her lobbying resulted in statewide action.

Although she, and others like her, truly did care about disabled people, her action manifested itself in legislation into the creation of the first residential institutions for people with disabilities in the U.S. At first, these institutions were set up to house disabled people who were homeless, charged with crimes, or needed care that their families or communities couldn't provide. Unfortunately, due to underfunding and lack of oversight, These institutions quickly became breeding grounds for abuse of disabled people and a way for society to lock disabled people out of the public eye. Additional efforts to keep disabled people out of the public were the so-called ugly laws, which prohibited anyone unsightly or physically disabled from appearing in public or working a job, unless the job displayed their disability for profit.

This led to an increase in the amount of not only mentally but physically disabled people institutionalized, and the ugly laws pushed disabled people towards the only work they had available. the circus, or the freak show. While institutionalization was occurring from the 1840s to the 1980s, there was a growing movement focusing on science, shifting the U.S. from the moral model to the medical model. This was called the eugenics movement. You might have noticed somewhere that this seems nothing like the moral model, which it isn't exactly.

Originally, institutionalization, as awful as it was, was a way for communities and families to care for the disabled people, but as time went on and society shifted, the moral model lost its grasp and the medical model took hold. Instead of caring for disabled people being the justification for institutionalization, the eugenics movement shifted the justification to science says we need to advance the human race and allowing disabled people to breed will degenerate the human gene pool. Starting in the 1880s, the eugenics movement had nowhere close to the amount of stigma it has today.

Claiming that it based itself in science, the eugenics movement was just what society needed to fully shift to the medical model. But wait, the medical model seeks to treat and cure disability. How is the eugenics movement like that?

Well, eugenics wasn't just killing disabled people at first. At the beginning, in the late 1800s, the push was for as many people as possible to be institutionalized so that they are kept off the streets from spreading their genes with one another. Once the technology was available, forced sterilization occurred in the 1920s. Eventually, forced lobotomization was enacted, and the eugenics movement reached its peak in the 1940s when it was taken to its natural end by Nazi Germany.

Okay, but what does this have to do with disability rights? Well, this is setting the stage, firstly showing that disabled people were absolutely an incredibly marginalized community, and secondly that almost every institution in the world was attempting to, at best, lock them away, and at worst, kill them. Never did disabled people have the chance to speak for themselves on the world stage until the late 1900s. This leads us right to the beginning of the disability rights movement in the 1950s. As the civil rights movement was occurring across America, changes started being enacted federally and locally in the direction of disability rights, and with the inspiration from the civil rights movement and changes in their favor, disabled people embraced the social model to push for change.

Social security was amended to care for workers who were disabled and aid permanently disabled people. Some cities enacted programs to provide at-home attendant care. Deinstitutionalization slowly began from activists exposing the abusive conditions at the facilities and research centers to aid developmentally disabled people were funded federally in the 1950s. These slow chips away at the system paved the way for activists to enter from all walks of life.

Ed Roberts successfully sued UC Berkeley to become the first student with severe disabilities to attend the school in 1962. Ed Roberts went on to lead a number of efforts, the most impactful of which being his founding of the Center for Independent Living in 1972. which created the Independent Living Movement. This movement fought for deinstitutionalization and reforms to the way society views disability, seeking to allow disabled people to lead their own lives independently. Roberts was appointed director of the California Department of Vocational Rehabilitation in 1976, an agency that had previously labeled him too disabled to work.

After leaving in 1983, Roberts returned to Berkeley to form the World Institute on Disability with Judy Heumann and Joan Leon. Remember Judy for later. Let's go back to the 60s again.

In 1965, Medicare and Medicaid were established, changing the care of disabled people from just those permanently disabled to those disabled for a period of longer than 12 months. Voting protections for disabled people were passed, and many states had started passing bills to fund research facilities for disabled people. By the 1970s, lobotomy had been banned in several states, the Fair Labor Standards Act was amended to allow people with disabilities into sheltered workshops, demonstrations were held to protest Nixon's vetoing of the Rehabilitation Act, several states ended their sterilization program, and sweeping laws that would change the landscape of disability in America were passed. The first of these was the Rehabilitation Act of 1973. Though Nixon had vetoed the bill previously, he did eventually sign it a year later. The bill would bar employment discrimination from the federal government, prohibit discrimination from any program receiving federal funding, and redefined what a handicapped individual was, changing it from, quote, a physical or mental disability which results in a substantial handicap to employment and can reasonably be expected to benefit in terms of employability from vocational rehabilitation services to, quote, a physical or mental impairment which substantially limits one or more of such person's major life activities, has a record of such impairment, or is regarded as having such an impairment.

This might sound like a small change, but it shaped the way disability was seen from the government forever. A, quote, substantial handicap to employment is vague and narrow in terms of defining a disability, whereas, quote, limits to one major life activity or is regarded as having such an impairment is extremely broad. and thus protects even disabled people that do not consider themselves as having a disability. This road wasn't easy, however.

To get the Rehabilitation Act passed, disabled activists led by Judy Heumann, remember her, protested the veto by stopping traffic on Madison Avenue in New York City, flooding letters and protest calls, and marching in protest. They called and mailed their representatives and made their voices heard, and the bill was passed. But that was the least of their worries.

Once it was passed in 1973, Section 504 of the Act The section that actually defined disability and placed regulations needed to be signed by the Secretary of Health, Education, and Welfare, or Secretary of HEW. These regulations were not signed until 1977. After Nixon signed the act, and Gerald Ford's Secretary of HEW didn't sign the regulations, and then Carter's Secretary of HEW was delaying the signing, enough was enough, and disabled activists engaged in national protests now known as the 504 sit-in. Led by Judy Heumann and Frank- Bow, sit-ins by disabled protesters occurred at the HEW buildings in Atlanta, Boston, Chicago, Denver, Los Angeles, New York City, Philadelphia, Seattle, Washington, D.C., and the most noteworthy in San Francisco.

At the San Francisco sit-in, Judy Heumann and 150 other disability activists engaged in the longest sit-in at a federal building to date. For 25 days, they occupied the building until Joseph Califano, President Carter's Secretary of HEW, signed the regulations. Though it took more than five years, they had their voices heard and achieved a major victory for disability rights.

The disability rights movement wasn't over yet. There was still a lot to do. Still in the 1970s, protesting led to the final ugly law being repealed. Independent living centers were established in many cities, the first demonstrations for wheelchair-accessible public transportation occurred, compulsory sterilization was all but finished, though sterilization itself was not gone yet, and the Supreme Court ruled in favor of a number of disability rights cases. On to the 80s, rules against sterilization started passing, the Americans Disabled for Accessible Public Transit, ADAPT, was founded, the Mental Illness Bill of Rights Act required states to provide protection for people with psychological disabilities, Widespread ADAPT protests saw legislation in the direction of accessibility and public transport, and in 1989, the original version of the Americans with Disabilities Act was introduced.

This leads us up right to 1990, where the redrafted Americans with Disabilities Act was passed and signed by President George W. Bush. I've mentioned a lot of things that have happened, but I haven't really touched on how they happened. With the ADA being redrafted, discussed, and talked about, but not passed, Disabled activists realized that they could have another Section 504 on their hands.

Not wanting to wait five years, they protested in an extravagant fashion. Organizing marches and demonstrations in DC and a number of other cities, the disabled activists realized they needed an attention getter, one that would get news stations to cover their movement. Their idea is what is now known as the Capitol Crawl, or, quote, the single most important catalyst for the passage of the ADA. Leaving behind their walkers, wheelchairs, crutches, and other mobility assistance devices, the disabled activists crawled up the 83 steps that lead to the Capitol. Children and the elderly alike participated in the crawl.

While reporters captured their struggle to make their way up the steps that thousands do every day with ease, this demonstration came alongside protests involving thousands of people, and the ADA was passed. One more quick thing I should mention here is that the passage of the ADA was not a partisan issue. The legislation was supported by Democrats and Republicans alike, and was supported and signed into law by Republican President George W. Bush.

Where was the pushback from? Religious groups and large business interests opposed the legislation for fear that installing accommodations would be too costly and could harm churches or business. Despite this, the ADA passed 76-8 in the Senate and passed unanimously in the House.

How did a few thousand disability activists with little monetary lobbying power manage to convince legislators to vote in their favor? Part of this is the fact that disabled people are the largest minority group, and there were many senators and representatives that knew or had loved ones that were disabled. Famously, Ted Kennedy spoke of his sister's condition and his son's lost leg on the Senate floor.

However, sympathetic senators can't be the only reason for the disability rights movement's success. Certainly the 504 sit-in changed history by sparking Califano to sign the regulations, and certainly the Capitol crawl and the numerous protests sparked the passage of the ADA. So, disabled activists didn't quite have money on their side, but they did have activism and persistence. So now the question remains, why is this important today? In case you haven't noticed, the Trump administration has sparked a new wave of the disability rights movement.

Attempting to cut Medicare and the ACA, as well as attempting to provide protections to businesses over workers, threatens the rights disabled people fought for and gained over 30 years ago. Why is it that the Rehabilitation Act, Section 504, and even the ADA were passed with both Democratic and Republican support, yet now these rights are threatened? Unfortunately, just like it took activism to gain the rights, it takes consistent activism to maintain them.

Going into all the reasons behind the various shifts the U.S. has had since 1990 would make this thing too long, but there is one thing to be certain of. No rights are ever safe. The civil rights movement did not end with the passage of the Civil Rights Act in 1968. It still lives on today in the fight against police brutality and discrimination. The feminist movement didn't end with women achieving the right to vote, nor will it with women achieving fully equal workplaces. The disability rights movement did not end with the ADA in 1990, though unfortunately many of the activists stopped fighting.

The social model of disability is still not the most pervasive model seen today, but it does provide us a good framework to work from. No fight for civil rights is ever over. Just as rights can be gained, they can be lost. Never stop fighting, even when the law has been amended.

Activism does not stop with a changed law, it stops with a changed public, when the activism is so ingrained in each and every person. that it is no longer needed.

Transcript for:Understanding the American Disability Rights Movement

Transcript for:
Understanding the American Disability Rights Movement