by Jessica Lopez (edited by Eric Prince)
One in seven people on Earth are disabled in some way (that’s one billion people worldwide).
In the United States, one in five people are disabled (that's 60 million people in the US).
Now, you may be wondering to yourself – how is ‘disability’ defined?
Disability is defined as a physical or mental condition that impairs someone's ability to do certain activities.
A disability can be clearly noticeable, like someone who doesn't have hands and feet.
But a disability can also be invisible, like someone with an intellectual disability (for example, Autism Spectrum Disorder).
Obviously, disabilities aren’t a new issue - people have lived with disabilities for all of human history. But, as a culture, we’ve only recently begun to address the needs of people with disabilities. For most of human history, disabled people have, at best, been overlooked, and, at worst, been outright persecuted.
Unfortunately, this history is often just as overlooked. We don't learn about the injustices disabled people have faced throughout history, we don't learn about the groundbreaking activism that changed how we view disability, we don't learn about the social attitudes that can lead to disability discrimination, and we don't learn how disability rights affect everyone.
So, today, we’re going to take a deep look at the history of disabled people.
A Brief History of Disability
Up until the 1800s, disabled people were often considered demonic or cursed.
Because of these views, disabled people were often a source of embarrassment for families. They didn't know how to care for their disabled family members and, many times, they couldn't afford to care for them (sometimes they just didn't want to). As a result, many disabled people were hidden away from the sight of others or kicked out of the home altogether.
The mid-1800s saw the age of industrialization, an era well-known for its horrible working conditions. There wasn’t much protection for ANYONE, let alone for disabled people.
Unfortunately, disabled people were hit the hardest. Many were unable to work in manufacturing positions due to their disabilities. And unfortunately, there weren’t many other options out there. So, disabled people often resorted to panhandling on the street to survive.
This made a lot of non-disabled people resentful. They often felt these panhandling disabled people were lazy, and that they were scamming hard-working people out of their money. A prevalent view arose during this time that disabled people just didn't want to contribute to society (and, unfortunately, this ideology persists today).
In response, cities began 'warning out' people with disabilities. This emerged from the concept that a city had the responsibility to care for its citizens, and if a city didn't want to take responsibility for someone, they had the right to send them away.
'Warning out' disabled people could be done with a city notice saying that a person is not welcome in town, or by 'passing on' a person by loading them into a cart and dropping them off in the next town. Displacement and the jailing of people with disabilities were both extremely common at this time.
Institutionalized
But these "solutions" weren’t effective. They were also largely unpopular with socially progressive people. So, an alternative solution was created: Institutionalization.
Institutionalization gained traction by providing disabled people rehabilitation so that, one day, they might be able to assimilate back into regular society (it also provided them a place to live).
Dorothea Dix was a notable figure at this time. During the mid-19th century, Dix created the first generation of state institutions for people with intellectual disabilities and mental health conditions.
This was a turning point in American history. People began to support the idea that the government has a specific responsibility to care for vulnerable or disabled people. The era of social reform had arrived.
Because of Dix's lobbying, the government began to fund state institutions. However, the institutions weren’t without their own set of issues.
Inside these institutions, disabled people often faced extremely poor living conditions and experienced high rates of abuse & neglect.
These institutions often had questionable and cruel methods of rehabilitating people. These methods ranged from shock therapy and dangerous experimental drugs to methods of negative reinforcement that usually resembled torture.
A major issue of institutionalization was the imposed isolation that often came with it. Many people in these institutions reported high levels of loneliness, depression, and anxiety (institutions today still struggle with these issues).
Another major issue was the lack of choice for disabled people. Many families viewed institutionalization as the best (or only) option for their disabled family member. However, disabled people were often left out of this decision-making process and were taken to institutions against their will.
Institutionalization created an atmosphere where families and doctors struggled to recognize the autonomy of disabled people, and, oftentimes, the preferences, beliefs, opinions, and personal autonomy of disabled people were ignored.
Because of this cultural mindset, institutionalization became a widely-adopted practice. Around the world, hundreds of thousands of disabled people were segregated away from society in these institutions (a practice known as 'warehousing').
However, life outside these institutions wasn't much better. Many disabled people remained in a society that didn't accept them, and, for these people, a new response was forming.
The “Ugly Laws”
In the late-1800s and early 1900s, a new set of laws became popular. They came to be known as 'ugly laws'.
These 'ugly laws' banned 'unsightly' people from being seen in public places. And if you were a disabled person resembling an 'unsightly or disgusting object' you could be legally denied service, fined up to $50 (that's over $1,300 today), or even arrested.
The laws kept many disabled people from going out for necessities and emergencies. Ugly laws were originally meant to keep beggars out of communities. However, in later decades they were used to deny disabled people services and keep them out of sight.
Sadly, these 'ugly laws' aren’t an ancient piece of American history - many of these laws existed in various forms until the 1970s.
Eugenics: The Era of Science Nobody Likes to Discuss
Unfortunately, "ugly laws" aren't the most egregious reaction to disabled people in the 20th century. That award goes to Eugenics, and in the early 1900s, the Eugenics belief system was spreading among intellectual groups around the world.
Eugenics took Darwin’s theory of evolution and morphed it into something truly and utterly disgusting. The fundamental tenet of Eugenics is the belief that certain people are inherently inferior due to certain undesirable genetic traits, and that in order to create a more successful species, these inferior people had to be eliminated from the human genome.
The practice of Eugenics caught on more than any of us care to admit, and the sterilization of disabled people happened all over the United States. Even the Supreme Court allowed it to happen. In 1927, the US Supreme Court passed a ruling stating that governments had the right (even the social responsibility) to forcibly sterilize anyone with a disability.
Over 70,000 people were forcibly sterilized without their consent in the US. The ruling responsible for this, known as Buck v. Bell has never been overturned (though it is now limited in certain cases).
The theory of Eugenics changed the way many people viewed disabled people within American society, and one of the most powerful ways Eugenics succeeded was by tying its belief system to a sympathetic moral anchor.
For example, many parents rejected food or life-saving treatment for their disabled children because they believed it would be better for their children to die than to live what they saw as a 'poor quality' of life. In their eyes, they were doing their child a favor.
Even medical doctors internalized the Eugenics belief-system. The most common response was to simply deny treatment or healthcare to disabled people.
A now famous case involves Harry Haiselden, a Chief Surgeon at a hospital in Chicago, who refused to perform life-saving surgeries for several children born with severe birth defects. Instead, he allowed them to die.
In fact, Haiselden himself wrote and starred in a film about his beliefs (The Black Stork, 1917). In the film, he portrayed his actions as merciful and sympathetic.
Even when doctors did not directly practice Eugenics, social standards often influenced their decision-making process.
Many times, a doctor could independently assess someone's 'quality of life'. If two people were in the emergency room - one non-disabled and the other disabled - a doctor might often choose to attend to the non-disabled person first.
Doctors also began to feel that using extended resources on a severely disabled person was 'futile'. This concept is known as 'medical futility', and it still exists today.
The worst instances of the Eugenics belief system led to the murder of thousands of people.
One of the most notable examples is the Nazi Germany program called Aktion T4, which oversaw the involuntary euthanasia (aka murder) of 300,000 disabled people in hospitals and mental institutions. Nazi officials hired doctors to carry out 'mercy killings' of people deemed to be incurable of certain disabilities.
At first, these doctors began with disabled children, allowing them to starve to death under the care of the hospital system. Soon, however, disabled people of all ages were killed, either through starvation or more direct & active methods (like poisoning and gassing).
They killed so many disabled people that they built chimneys next to hospitals to burn all the bodies.
The Aktion T4 program was "officially" suspended after religious groups protested. However, the Nazis continued the program in secret until 1945.
Disability in the Modern Era
The 1960s in America brought a lot of social turmoil: civil unrest, protests, and the Vietnam War.
The Vietnam War was a nightmare for most people, but it was particularly damaging to the disabled community. The U.S. Secretary of Defense at the time, Robert McNamara, created a program known as Project 100,000. This program had a goal of drafting 100,000 intellectually and physically disabled people to use as expendable manpower.
The U.S. falsely marketed the program as a great skill-building opportunity for people with disabilities. Under the program, people with disabilities had a separate mark on their files identifying them as disabled. They were 3 times more likely to die in combat.
But the 1960s also brought about an era of social change. People began to recognize the flaws of "the system": the oppression of minorities, the legal inequalities, and the cultural issues that were widely accepted & adopted without question.
When the Civil Rights Act of 1964 was passed, it protected against discrimination based on race, color, religion, sex, and national origin. But it didn’t protect against discrimination based on disability. And despite attempts to be included in the bill, disabled people were again left out of the conversation.
This exclusion spurred disability rights activists to push for laws that directly addressed disability rights.
Section 504, passed in 1973, was one of the first pieces of legislation to provide disability rights. It was written as a law meant to curb disability discrimination in federally-funded programs. But it took a long time to be implemented.
After four years of waiting for Section 504’s implementation, disability rights activists organized sit-ins at eight federal buildings across the country. One of these was held at the San Francisco federal building where (beginning on April 4, 1977) 150 disabled protesters held the longest civilian occupation of a federal building in US history, at 25 days. Section 504 was implemented on April 28, 1977.
Despite this win, there was still a lot of work to do.
Decades of activism followed. One such demonstration saw disabled activists laying themselves in the streets to protest the unlawful implementation of inaccessible public transportation vehicles.
In the 1980s, disability rights champions often focused their attention toward grassroots activism. Disabled people organized to effect change in local and state public transportation, schools, and public services. One week-long student protest at a deaf university led to the appointment of their first deaf university president.
At the same time, other disability activists were fighting for change on a national level. They lobbied for laws to protect against specific forms of disability discrimination. Some of these laws included the Air Carrier Access Act which prohibited airlines from discriminating against disabled people, and the Voting Accessibility for the Elderly and Handicapped Act which requires voting accommodations during elections.
However, these laws only addressed specific instances of disability discrimination, and activists began to lobby for a comprehensive civil rights law.
The Americans with Disabilities Act
All of this activism eventually led to the Americans with Disabilities Act (ADA).
The ADA limited disability discrimination in many areas of life: specific building requirements (like ramps and doorway width), public infrastructure (like sidewalk curb cuts), job requirements (equal opportunities), public transportation (accessibility), fair medical treatment, and freedom to exercise these rights without retaliation.
Modeled after the Civil Rights Act to be a sweeping civil rights law for disabled people, the ADA was introduced to the Senate floor in 1988. But it wasn’t easy to pass.
Two years of negotiations, lobbying, and delays followed. The biggest hurdle were the many businesses that lobbied against the law because they didn't like its accessibility requirements.
But disability rights advocates kept fighting to pass the bill. Unfortunately, the bill stalled in Congress in 1990.
This stall was the final straw for many disability rights activists, and it led to a series of protests in Washington DC in support of the ADA. Over 1000 disabled people showed up to these protests which went on for several days.
In one of the protests known as the Capitol Crawl, dozens of disabled people shed their wheelchairs and crutches to pull their bodies up all of the steps of the Capitol Building. At least 108 disabled protestors were arrested, many of whom were in wheelchairs.
The ADA was passed a few months later.
Why Should I Care About The ADA?
At this point, you might be wondering, "Why should this matter to me? I’m not disabled!".
Well, disability rights affect everyone in one way or another. The ADA didn't just accommodate disabled people, it provided structures that everyone can benefit from. While many of these are conveniences for non-disabled people, they are essential for people with disabilities.
Here are some of the things the ADA created (count how many you use on a daily basis):
However, the law fails disabled people in other ways.
The Failures of the ADA
Though the ADA outlaws job discrimination in various areas of employment (hiring, accommodations, job benefits, and pay), it still doesn't prevent disabled people from being paid well below federal minimum wage if they're considered less productive in their jobs.
This unfair pay standard is actually the result of a separate set of laws called The Fair Labor Standards Act (FLSA), which allows certain employers to pay less than minimum wage to people whose productivity rates are considered impaired by a disability. And the results of the FLSA can be egregious: in some cases it allows disabled people to get paid just a few dollars per hour.
The FLSA effectively contradicts the equal pay provisions in the ADA for many disabled workers. While pay based on productivity can make sense from a business viewpoint, it contributes to the economic inequality of disabled people and treats their time and efforts as unequal.
Aside from this, one of the biggest issues with the ADA is that its regulations are often poorly and inconsistently enforced. Because of this, ADA violations abound across the country, keeping accessibility limited. The ADA doesn't always prevent disability discrimination either because discrimination is often very difficult to actually prove, let alone penalize.
Disability Rights Today
While the ADA addressed many needs for disabled people, it still leaves A LOT of room for improvement.
Contrary to many people's assumptions, disabled people still don't have full equality. The ADA took great strides in beginning the fight for equality, but it did not end the fight for equality.
While many of the historical events we’ve discussed today are considered extreme by today’s standards, the general attitudes toward disabled people persists today.
Disability is often seen as an "inferior condition", leading to the favoring of non-disabled people. The idea of having a disability is considered an inherently bad thing rather than just another fact of life. It has been viewed as an example of imperfection in humanity that needs to be hidden away or eliminated, by whatever means necessary.
Discrimination Today: Ableism
Today, negative judgement and misconceptions still follow disabled people. We've recently coined this mindset as ableism, which is the social prejudice and discrimination against people with disabilities.
Ableism is common and comes in many forms. It can range from obvious contempt or harm of disabled people, to holding incorrect assumptions, or neglecting to accommodate the needs of disabled people. Ableism is sometimes described as a conscious discrimination of disabled people, but most of the time this isn’t true.
Ableism often presents itself in simple, everyday interactions with disabled people. For example, many people are afraid to look at a disabled person or to ask permission to ask questions. People often avoid speaking directly to disabled people themselves, opting to speak to the person who is helping them (it’s important to not make this assumption). Other times, when people do speak to disabled people, they often exaggerate their mannerisms. While well-meaning, this comes across as infantilizing toward disabled people.
It also doesn't help that our culture has created (and continues to perpetuate) certain stereotypical views of disabled people. These stereotypes are best displayed by the media.
Many movie portrayals depict stereotypes like the disabled villain, the 'overly inspirational' stories of disabled people living ordinary lives, and 'super-disabled people' doing strenuous tasks.
So, how do we address ableism? Well, it begins by addressing the root of the ableist issue: Individualism.
Individualism and the American Way
In the latter half of the 20th century, a popular political ideology formed around Individualism. Individualism, at its core, is a well-meaning ideology. Adherents believe that the government and society should remove themselves from the lives of people and allow them to act freely within a society without interference.
Individualism emphasizes self-reliance, independence, and personal responsibility first over society as a whole. This can be good because it motivates people to use their strongest skills to reach their goals.
However, this mindset ignores those who face unique challenges in life. And the belief that the government and society should not interfere with everyday activity inherently makes life more difficult for disabled people.
Social Darwinism, Eugenics, and Individualism all emerge from a common mindset that often goes unnamed: the Meritocracy.
The Meritocracy is the idea that wealth and power are only attained through 'merits' like greater talent, effort, and qualifications. If you're not wealthy, you must be lacking those things.
Like Individualism, a Meritocracy is not inherently evil. It does not single out disabled people. However, the Meritocracy belief does ignore the needs of disabled people.
When someone subscribes to something like the Meritocracy or Individualism, they oftentimes focus on the positive feedback mechanism of these beliefs. That if you work hard and develop personal skills you will succeed in life. And because of this focus on the positive feedback mechanism, those who are disadvantaged are often ignored. This creates barriers that hold many people back.
The Future of Disability
The Disability Rights movement has come a long way, but it still has a long way to go to win true equality.
The question is, what can and should be done for the future? How can we give people with disabilities their rights to equality, fair treatment, and acceptance within a society that isn't fully equipped for them?
There is also enormous change we can make at a societal level.
We MUST listen to the voices of disabled people. They have voices and can speak for themselves - it's up to us as a society to listen to them. The only way to make any change is to expose ourselves to the perspectives of disabled people and allow our views to be challenged. We MUST amplify people with disabilities in the media and in civil rights discussions. The Disability Rights movement needs to be recognized as a major civil rights issue. We MUST increase the level of education about disability rights in civics and history classes in school. We need to bring disability rights into mainstream classes and apply it to the context of social studies as a whole, the same way we did for racial studies, gender studies, and feminism. And we MUST reset our mindsets about what it means to thrive and the role our society plays in ensuring that EVERYONE has the same opportunities.
If you are interested in learning more about disability and disability rights, here are some wonderful sources for you (we highly recommend all of them).
"I'm Not Your Inspiration", Stella Young
"Crip Camp", Netflix Documentary
"Our fight for disability rights", Judith Heumann
"Nothing About Us Without Us", by Julie Carmel at The New York Times
"Words Matter, And It's Time To Explore the Meaning of Ableism", by Andrew Pulrang at Forbes
"Introduction to disability and human rights" at hhrguide.org
"Social Darwinism" at history.com
"Medical Futility: Legal and Ethical Analysis", by Peter A. Clark at the AMA Journal of Ethics
Jessica Lopez (@realjessl) was born without hands and feet! She is very passionate about Disability Rights and hopes to build a career in disability advocacy. Currently, she is a social media manager for Diversability (@diversability), a disability rights organization, and will soon be starting undergrad as a business student. Some of her other interests are watching movies and finding her legs!
Eric Prince (@got2now) is the creator and operator of howwegottonow.com, a platform designed to provide context and nuance on the most important events happening around the world. Eric enjoys the daily NYT crossword puzzle, underlining entire paragraphs in books, and drinking three-too-many cups of coffee a day.
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