I've Been Disabled For Almost 29 Years. Here's What I've Learned.

pbs.org

The Iconic Civil Rights Protest You Don't Know | American Experience | PBS

Meet the protesters who crawled their way into history—and changed how all Americans live.

Imagine climbing up 83 steps. Perhaps that doesn’t seem like such a big deal—but that’s likely because you’d be walking. What would you do, though, if you couldn’t?  That was the premise behind the Capitol Crawl, a now-iconic protest to demand the passage of the Americans with Disabilities Act. The ADA was a landmark civil rights bill aimed at providing basic amenities and protections to some 40 million mentally and physically disabled citizens. Today we take many of the ADA’s changes to society—curb cuts in sidewalks and closed captioning on entertainment, to name just two examples—for granted. But the act’s passage, in 1990, was anything but guaranteed. By spring of that year, the ADA had been trapped in legislative limbo for months. Despite the strong support of then-President George H.W. Bush, the act was languishing in Congress, caught in the deliberations of House subcommittees. Many U.S. Representatives balked at the expense and complication posed by the ADA’s requirements. Enter ADAPT—American Disabled for Accessible Public Transit—a grassroots disability rights organization that had been staging protests across the country even before its official founding in 1983. On March 12, 1990, ADAPT led a procession of more than 500 marchers, including other disability activists and lobbyists, from the White House to the west side of the U.S. Capitol. There, in the kind of guerrilla civic action for which the organization had become known, scores of marchers dropped to the ground and began the long journey up the hard marble stairs leading to the “People’s House.” They climbed backwards or on their hands and knees, step-by-painstaking-step. “As I’m seeing the people around me,” recalled Anita Cameron, one of the ADAPT activists who made her way up that day, “I'm like, ‘whoa, we are doing it. We are really doing it. We’re, like, crawling into history.’” Rolled up in their pockets, protestors carried copies of the Declaration of Independence. Once they finally summitted the stairs, ADAPT reps delivered those scrolls to members of Congress as a reminder of the ADA’s importance. And while media coverage of the event wasn’t extensive, but the publicity that was garnered by the Crawl was impactful. “The pictures were striking,” said The New York Times several days later, “just as they were intended to be: Children paralyzed from the waist down crawling up the steps of the Capitol.” Six months later, following the bill’s now-remarkably swift passage through the House, President George H. W. Bush signed the ADA into law. “We did it to show that we disabled people, as second class citizens, needed change. And the vehicle for how it was going to change was the ADA,” Cameron told American Experience, reflecting on the Capitol Crawl’s significance. “But I think a lot of people forget that the ADA was the floor. It was not the ceiling. So it was the beginning of rights for us, but it was not the end.”

Disability History Crash Course

Throughout history, disabilities has been viewed in many different ways, from curses and bad luck, to simply unfortunate differences some are born with.  In some ancient civilizations, disabled individuals were often marginalized or viewed through religious/superstitious lenses.  In ancient Greece and Rome, individuals with physical or mental disabilities were abandoned or ostracized from civilization. 

 In Europe during the Middle Ages, disabilities were often linked to sin, religious disfavor, or divine punishment, which lead to social exile.  Often, if the disabled individuals received care, it was from family members or religious institutions.  As the age of Enlightenment came to prominence in the 17th and 18th centuries, society began to shift towards medicalization, which changed the view of disability from punishment, to a natural defect, to be diagnosed and treated. 

The 19th and 20th century brought about the rise of sanatoriums, asylums, and institutions designed as a way to 'treat' people with disabilities.  This new approach of 'treatment' was, in reality, a way to hide disabled people from the public, and often lead to isolation and severe medical mistreatment of the patients.  This, along with the creation of Eugenics movements, lead to many harmful stigmas surrounding disability.

As disability rights movements gained momentum in the mid-20th century, different bills and acts were passed in order to protect disabled people.  Some  landmark events were the Independent Living Movement and the passing of the Americans with Disabilities Act (1990).  As the U.S. shifted away from seclusion and towards inclusion, equality, and accessibility, many of the stigmas surrounding disability began to easy, and people began to see disability as not just a medical issue, but as a social and political issue.

yes, there are that many really disabled people on the internet actually

When I was less sick I used to think, "It seems like such a large portion of people on the internet are disabled, it can't possibly be that large of a percentage of the population" and then let my ableism demons tell me it was because they were faking (the same ones that told me I was faking, until I made myself really ill.)

But now that I'm sicker and wiser I realize I was logically just wrong because

The internet is disabled people's lifeline. There are more disabled people on the internet because OF COURSE. People who aren't disabled can be less chronically online because they don't have to be. This is textbook selection bias!

But actually also I was almost right, because there are way more disabled people in society than you would think! They're just systematically hidden and excluded from public spaces for abled peoples' convenience! 🙃

Anyway maybe this will help you understand and/or explain to abled friends and family.

A real, unbutchered pain scale.

Based on this, my base level of pain is a 7. Sounds pretty accurate

I'm sharing a few articles on disability rights. It's the history of forced sterilization in the United States. I think they give good insight and need more circulation.

Independent Lens

Unwanted Sterilization and Eugenics Programs in the United States

A shameful part of America’s history.

American Civil Liberties Union

Immigration Detention and Coerced Sterilization: History Tragically Repeats Itself | ACLU

The ICE detention story reflects a long pattern in the United States of the coerced sterilization of marginalized populations, particularly

This is a fascinating article about how the Medici, who had a hereditary mobility condition, adapted the architecture of Florence for disability access:

Florence’s Medici had a family curse: an agonizing hereditary medical condition causing torturous joint pain and severe mobility restrictions, so it was agony to stand, walk, or even hold a pen. Yes, Renaissance Florence, cradle of the Renaissance, was run by disabled people from a sickbed. The famous Cosimo had to have servants carry him through his own home, and used to shout every time they neared doorway. When asked, “Why do you shout before we go through a doorway?” He answered “Because if I shout after you slam my head into the stone lintel it doesn’t help.”

feliciakornbluh.substack.com

History Teaches . . . The Power of (Imperiled) Disability Rights

Civil Rights Histories are 'All One Piece String': Disability and "DEI"

A really good overview of the disability rights protections threatened by Trump and how his ableist and racist policies are inextricably woven together.

Disability Timeline

A non-comprehensive list of important events about the Disability Rights Movement from 1800-1990

1815-1817 - Formal Deaf Education Begins in the U.S

1829 - Louis Braille Invents the Raise Point Alphabet

1907 - Eugenic Sterilization Law for People with Disabilities is Enacted

1932 - Franklin D. Roosevelt, a Person with a Disability, Elected President

1934-1940 - National Federation of the Blind Founded

1935 - Social Security Act Signed into Law

1939 - Nazi Program Kills Thousands of People with Disabilities

1946 - National Mental Health Foundation Founded

1947 - Paralyzed Veterans of America organization founded

1954 - Brown v Board of Education

1963 - Community Mental Health Act signed into Law

1965 - Medicaid Assistance for People with Disabilities and those with Low-Income

1968 - The Architectural Barriers Act of 1968

1973 - Disabled in Action, PA founded

1974 - Last of "Ugly Laws" Repealed

1975 - The Developmental Disabilities Assistance and Bill of Rights Act Enacted

1975 - United Nations Declaration on the Rights of Disabled Persons

1978 - National Council on Disability Established

1982 - United Nations Encourages Global Equality and Participation for the Disabled

1990 - Americans with Disabilities Act (ADA) is signed into law.