A History Lesson: Disabled Activists and our Right to Exist in Public
For a History Lesson and reminder of the role Disabled people have played in activism, I singled out a few instances, but there’s hundreds of thousands throughout America’s history. Many of the privileges and rights people have had are due partly to the fight of our disabled ancestors.
(Much of this post references the following books: A Disabled History of the United States by Kim Nielsen, White Rage by Carol Anderson, A Queer History of the United States by Michael Bronski, and An Indigenous People’s History of United States by Roxanne Dunbar-Ortiz. Any other references are linked in the post).
A Bit of History, starting in 1800s as an Intro
Through the 1860s through 1940s, the Ugly Laws as they came to be called dominated many of the state and federal laws. These laws made it a crime for a person with a “physical or mental deformity” to be out in public places. Since a large percentage of Civil Wars veterans came home disabled, many of these laws targeted them.
As an example of an Ugly Law, San Francisco in 1867 banned ““any person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object” from the “streets, highways,thoroughfares or public places of the city.” Other cities such as Chicago and Portland and many others soon followed suit.
These city officials claimed distinctions based on class, and furthered the demonization of disabled people with anti-begging ordinances. Thus locking out of public sphere and out of jobs many poor disabled people.
However, despite these ugly laws, the public grew fascinated with what they deemed “deviant bodies” and as early as 1840s, traveling “freak shows” in vaudeville, P.T. Barnum’s Museum in New York, circuses, county fairs, and World fairs. Disabled people were put on display based on “physical and mental deformities.” For some disabled people, this was the only way to survive.
Institutionalization and demonizing of “Deviant Bodies”and “antisocial behaviors”
After Civil war, insane asylums began to increase as well, and patients were segregated based on gender, race, and “physical and mental deformities.” These places were often deadly due to poor medical hygiene and care. Experiments were also conducted on patients. For example, Dr. Julius Wagner-Jauregg would without consent from the patient purposely inject them with malaria to ‘cure syphilis’ and many died from malaria.
The diagnoses for admission ranged from epilepsy to religious excitement to disease of the brain to fatigue to hysteria.
Those admitted included war veterans, women, Indigenous people, Black people, and anyone the medical establishment deemed ‘physically or mentally deformed.’ They’d often trapped there, with their right to freedom rescinded. It was incredibly hard to leave the insane asylum, as even arguing for freedom could be deemed a ‘mental deformity.’
For Black patients, medical institutions relied on harmful racial theories, which resulted in even worse care than white patients, increasing the malnourishment and mortality rates.
Historian Jim Downs wrote: “freedom depended upon one’s ability and potential to work… Scores of disabled slaves remained enslaved for decades.”
If not trapped in their prior enslavement, they often ended up incarcerated within insane asylums.
Image from wikimedia, that depicts Black patients and White patients crammed in a room at an insane asylum.
The intersection of class, gender, race, and (dis)ability resulted in the loss of freedom for many within asylums.
Between the increase in insane asylums, ugly laws, and anti-begging laws, many disabled people found it near impossible to exist in public at all. Who was labeled insane or “deformed” shifted and changed to include more people of specific demographics, especially those targeted by city, state, or federal governments. The Medical establishment played a large role in such approaches to anyone that was deemed “deviant” by authorities.
These laws were enforced brutally, but also met with resistance from disabled people of all races and gender. However, many of these ugly laws were not fully repeated in may states until the 1970s and 80s, and in some cities, they were never fully repealed, simply not enforced due to federal anti-discrimination laws.
Repealing the Ugly laws did not happen on a whim. It involved decades of intense protests, sit-ins, and coordinated sets of strikes by disabled union members and their non-disabled union allies, which grew outward from there. Since anyone of any race, gender, orientation, and citizenship status could become or be disabled, the fight involved people from many disparate and decentralized groups.
So with that introduction, let’s take a look at a few crucial examples that had a large role on the civil rights struggles.
Disabled Miners and Widows and the Mining Strikes of 1970s
In West Virginia 1968, seventy-eight miners died in a mine explosion, which shocked the country and put a spotlight on mining dangers. Regional doctors began to fight back against the mining companies’ long medical coverup and denial of black lung disease, and brought that to the union halls. About this time, “Tony” Boyle gained control of United Mine Workers of America (UMWA), and began cutting the pensions of Disabled mine workers.
In 1969, Joseph Yablonski ran against a corrupt “Tony” Boyle to end corruption within the UMWA. However, they were assassinated by Boyle, per the courts investigations into Yablonski and his wife’s death.
Angered, miners founded Miners for Democracy and together with Disabled Miners and Widows and the Black Lung Association, they led the fight to reform the UMWA.
Robert Payne and other Disabled miners in the 1970s started a five-week strike, where they compelled non-disabled miners to join them until over twenty-five thousand workers adhered to the picket lines. These disabled miners led the charge in reforming the UMWA union, which included strikes and lawsuits to push for regulations to make mining safer and for disabled miners to received their promised pensions. The abled-bodied miners understood they risked becoming disabled themselves via injury or daily intake of coal dust.
One crucial point is that there was no one leader for the wildcat strikes that started in 1970 and concluded in 1978. The movement stayed decentralized as the rank and file conducted their strikes from West Virginia to Illinois. This culminated in 1977/78 with one of the longest running strikes in labor history.
Solidarity across class, race, gender
Like prior Disabled activists in the early 1900s, Payne and the members of Disabled Miners and Widows proclaimed themselves worthy citizens. By using terms such as “rights” and “discrimination” the borrowed from earlier anti-war and racial freedom movements.
This fight grew outward from the miners as more activists, advocacy organizations, and ordinary citizens began to put pressure on the government to made disability a protected class. This fight intersected not just disability but also class, race, and gender.
In 1973, one notable activist, Clara Clow, fought for accessible public spaces in her town of Frederick, Maryland. Her husband helped organize the Disabled Citizens of Frederick County United.
“Our main focus is architectural and attitudinal barriers,” Clow told a reporter in August 1990. “In the beginning people really did think we were outrageous. It’s been kind of a long fight. I guess I’m an activist. I think it’s just caring.”
Much of the fights grew outward until pressure from disabled activists and their allies pushed for the American Disability Act to pass. There’s a lot of crucial justice work and solidarity that went into that century long fight, so I recommend reading up on it.
For now, I’ll focus on one of the important precursors, a fight Disabled activists today are having to face yet again.
Rehabilitation Act and Section 504
In 1972, Congress drafted the Rehabilitation Act, which was driven largely by the needs of Vietnam veterans. However, this act drew the gaze of the civil rights activists largely due to Section 504.
In Section 504, it stated that people with disabilities should not be “be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”
The bill was first vetoed by Nixon in 1972, however, activists across the country from various disability advocacy groups and many student groups testified before state legislatures and Congress to push for the elimination of architectural, educational, bureaucratic, and other barriers. They argued heavily for elimination of these barriers and for the ability to be considered for jobs.
Despite Nixon vetoing the Rehab Act a second time, it passed in September 1973. Its section 504 gave disabled people legal and cultural frameworks to gain access to the parts of society they’d been denied prior.
However, these laws were not enforced. Through the lawsuit Cherry v. Matthews, activists pushed for enforcement regulations, and in July 1976 a federal judge ordered the Secretary of Health, Education, and Welfare (HEW) to develop regulations.
With the continued federal failure to enforce Section 504, Disability activists staged demonstrations in Washington D.C. and in each of the ten HEW offices across the country. This sit in lasted twenty-five days. Judy Heumannhelped lead one of the largest sit-ins of federal offices.
Image of Judy Heumann in her wheelchair as she speaks into a microphone. There is a sticker on her coat that reads “sign 504.” Image from wikimedia.
“Oh deep in my heart, I do believe that we shall overcome today,” protesters sang at the sit-ins.
These protests gathered allies from local and national labor unions who joined protestors and wrote statements of support.
When phone lines were cut, the Butterfly Brigade, who were a group of gay men who patrolled streets to stop antigay violence, smuggled in walkie talkies.
The Black Panthers provided one hot meal a day, and Chicano activists brought food regularly.
Chuck Jackson, who was part of the Black Panthers, joined the protest by provided attendant-care services for Disabled Black Panthers in the sit-ins and other protest members.
Increasing media attention brought the focus of the nation. Images and video of disabled people crawling up the steps to reach the sit-in were heavily publicized.
Four weeks into the occupation, HEW secretary Joseph Califano signed the enforcement regulations, thus ensuring all programs receiving federal funding could not discrimination based on disability.
The Fight for our rights is about access for all
In A Disability History of the United States, Kim Nielsen writes:
“Movement participants argued that disability was not simply a medical, biologically based condition. Indeed, the movement sometimes directly challenged medical authority to define “disability.” Using the work of activists and intellectual theorists such as Erving Goffman, Jacobus tenBroek, and Irving Kenneth Zola, advocates argued that disability is a social condition of discrimination and unmerited stigma, which needlessly harms and restricts thelives of those with disabilities and results in economic disparities, social isolation, and oppression.Just as the civil rights movement critiqued hierarchy based on racial differences, and just as the feminist movement critiqued hierarchy based on sex and gender differences, the disability rights movement critiqued hierarchy based on the physical, sensory, and mental differences of disability.”
Part of that movement involved independent-living and deinstutitionalization of disabled people. In this vein, the disability justice movement slips into the abolition movement neatly. As both movements seek to end the imprisonment and non-consensual institutionalization of people the state deems ‘less than’ or ‘problematic’ or ‘too violent.’
Disability Justice developed the model of ‘spaces’ to help explain accessibility. Starting with architectural (physical) space, transportation space, and sensory space, various Disabled theorists and activists expandedupon these to better explain the barriers they faced. Other spaces include digital space, media space, information space, community space, justice space.
The ‘spaces’ model depicts the multi-layers of access (or lack thereof) which impact disabled people (of any race, gender, orientation, citizenship status, parent or non-parent). However, these ‘spaces’ also impacted abled-bodied people of other groups such as parents with kids, Black and Indigenous People of Color, LGBTQIA people, immigrants, and those at the intersection of all those identities.
The fight for accessibility and access never ended for disabled folks.
I’ll stop there for now. I really need folks to understand the crucial role disabled activists like myself play. And when we are abandoned and left for dead, that means all you currently abled-bodied folks are next, as any of you can become disabled at any time whether by virus, disease, accident, hereditary, born with it, traumatized, or proclaimed so by authorities.
Disability is the one marginalized group anyone can join at any time.
We are in this fight together. Listen to the activists of prior decades, see how the Disabled activists, Black Panther, union members, gay and trans folks all worked together to lay our activist foundation.
“Until all of us are free, none of us are.” Please do not forget us. Fight alongside us. Thanks for reading.
#activism #civilRights #disabilities #disability #disabilityJustice #disabled #disabledHistory #humanRights #insaneAsylums #intersectionalFeminism #justice #laborStrikes #Race #section504 #strikes #uglyLaws
There was a movement to make the treatment of mental illness more humane during the 1700s and 1800s, but what did day-to-day life actually look like in the insane asylums of 1854?
Frank T. McAndrew Ph.D. (Psychology Today)
Accessible Spaces
For definitions on the terms used here and an example that breaks down ableism, see my Tackling Ableism post.
NOTE: i think i am probably preaching to the choir here, but i’ve thought a lot about disability justice lately and how movements practice that. (Note: i’m in pain today so capitalization isn’t happening). This was written as an Facebook post in September 2020.
when i ask for accessibility as a disabled person, most abled-bodied (as in non-disabled people) assume that means if the ‘physical space’ is accessible for mobility reasons. it’s a common and not entirely accurate assumption of the ask itself. we are taught to view accessibility only as physical space adjustments, but this is not the only meaning of the word ‘accessible’ and it erases the diverse needs within the disability community.
the needs within the disability community can also improve the lives of those who aren’t disabled; accessibility is about justice for all people, where we create an multi-layered environment that is accessible not just transport-mobility-wise or physical-space-wise but also information-wise and multiple-role-wise.
what do i mean by multi-layered accessibility?
accessibility is about movement through the multi-layered spaces within our society. it’s about mobility.
mobility through physical space, information space, community space, intellectual/engagement/labor space, sensory space, transport space, time-independent space, and justice space.
mobility is the way we move in society whether physically through spaces such as buildings or streets. mobility is also how we move figuratively through community relationships.
mobility is how easy it is for us to access information and share information. another form of mobility is the roles we have in a community or in a movement — those roles provide emotional and intellectual spaces where people can exist based on their gifts.
so mobility justice and accessibility is a multi-layered space that exists not just in physical/transport space but also in community-space and information-space and sensory and intellectual/labor space.
we need to be cognizant of these multi-layers when creating events and movements so that we can be accessible to our most vulnerable members of the community.
so when a disabled person asks if something is accessible, we aren’t just asking if we can navigate to and from the event, or if we can understand the information presented (such as is there interpreters, etc), but also if there is a role we can exist within to further the goals of the movement as well as information about the movement and/or event that is easy to access and share.
Community Care and Accessibility
community care is also reliant on accessibility from a mobility justice framework. we cannot care for one another unless we find ways to center accessibility so that all people feel able to access support systems that may meet the multitude of needs in a diverse community.
to build up community care so that these diverse needs can be explored for possible accessible services and care practices is crucial to the goal of mutual aid efforts and the idea of community care itself.
accessibility is a gift not an add-on. it is a gift that provides a multitude of avenues for people to participate in ways that fits their abilities and energy levels.
if we reframe how we view accessibility, where we see it as a gift that creates more depth and space for all to exist and participate, then we can revolutionize our approach to community and building movements. centering accessibility — and its multi-layered definition that goes beyond just physical space — is crucial to liberation of all people.
our most vulnerable populations are Black disabled trans people, and thus accessibility also needs to be examined from their viewpoint in order to best meet their needs.
when we view and create access with our most vulnerable populations, we are creating a multi-layered space that is accessible for all people, as it is when our most vulnerable populations needs are met that all needs will be met as well.quote by me
that theory of building up has shown to be helpful especially in many Black Lives Matter groups around the country and in Indigenous groups, where their centering of the most vulnerable populations often created a fluid accessible multi-layered space that is held accountable to the needs of those communities. it created a creative and dynamic space for the diversity of people to exist.
to remind, the disability community is a vastly diverse community of so many different genders, sexual orientations, races, ethnicities, etc — to center accessibility and the multi-layered tenants of mobility/disability justice means opening up community and movements to a diverse and gifted group of people. it nourishes and inspires more creative ways of existing in relationship with one another.
may we learn and seek understanding. may we hear the voices of the vulnerable and seek to meet their needs. may we create community systems that are accountable to one another and care for one another as we are. may we listen and grow and uplift one another in the work we do.
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feel free to offer thoughts or critique what I’ve written here. as a scholar, i read a lot and try to distill ideas into digestible formats, and as long as people speak in good faith to me, i’ll welcome more information and creative exchange!
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Bibliography of Sorts
these ideas and definitions are based on the writings of disabled people such as Alice Wong, Imani Barbarin, Matthew Cortland, A. H. Reaume, and other disability activists as well as conversations with local disabled activists.
a great book about this is the anthology: Disability Visibility: First Person Stories from the Twenty-First Century edited by Alice Wong
another great book about this is Mobility Justice by Mimi Sheller.
Care Work: Dreaming of Disability Justice by Leah Lakshmi Piepzna-Samarasinha
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Crafting Accessible Spaces
I typed up the following guide for a friend to assist them with what questions to consider when centering accessibility at their event. May it help all of you as well.
Do you have any questions to add to any of the categories that I may have missed? Is there further details on a suggestion that I could add? Let me know in the comments! I’ll edit this post as needed.
physical space:
- is the area accessible for limited-mobility folks? As in can we reach it and navigate through it easily?
- If there are speakers, can everyone in the audience hear the speaker? If not, how can the physical space be adjusted so people can hear better or see the interpreter better?
- How do you present any slides — is that easily seen by the entire audience?
- Do an audio-visual description of yourself: describe what you look like, skin tone, hair color and type, clothes, and your immediate surroundings. Have everyone include this in their introductions.
information space:
- are your materials easy to read? As in avoid jarring color combinations or too small font?
- Are there interpreters if there are speakers? (This includes ASL as well as spoken languages).
- Do you require everyone to include pronouns in their introductions? (You should.)
- Does your online materials have alt-text and/or captions for those with sight and hearing disabilities?
- Is information on accessibility easily available in your event invites?
- Is the information translated into a language that is understandable by one’s audience? (This includes adjusting words used based on culture as well as different spoken languages).
community space:
- How are you engaging the affected communities?
- In what ways are you engaging in mutual aid for those that may attend? (such as meeting their needs in the other intersecting accessibility spaces I listed here).
- In what ways are the needs of the community being listened to and addressed? Having accessible discussion spaces for community to provide feedback. Include the community in collaboration on how to create the access they need to fully engage with society and with one another.
- Is the community walkable (or wheelable with a wheelchair/mobility aids)? Is the sidewalks easy to traverse? Is needed services nearby? Is there a way to create a mixed zoned neighborhood so that the community can access the food, healthcare, parks, etc to fully engage one another and the city at large? To be able to access events within the town?
intellectual/engagement/labor space:
- How are you utilizing/leveraging the gifts of the disabled community?
- Are you sharing materials made by disabled people and providing compensation for their labor? Are you compensating the labor of disabled folks advising your event?
- Is compensation possible – why or why not? What would compensation look like ideally? Is the idea of compensation preventing you from utilizing the gifts of disabled people? Why is that?
- In what ways can you leverage those gifts to avoid tokenizing and/or erasure?
sensory space:
- Do you have a space cordoned off for those that may get sensory overloaded to cool down? (This will allow them to “take a break” to cool down and then return to the event. The spot should be behind any speakers, cordoned off with a sheet or a partially open door, and if indoors, lit dimly.)
- Do you have content notes/trigger warnings written into your scripts? (This allows people who have panic attacks to determine their level of engagement).
- Do you allow adequate time between speakers for people to process what was said? (Having speakers back to back without at minimum a two or three minute break can be exhausting for some disabled folks).
- Do you have materials set up for deaf or visually impaired folks to access the materials and understand content?
transport space:
- how do people reach your event? Is there an easy to find parking area and accessible walkway to your event?
- For those that may not be able to drive themselves, are you near a bus line or have a ride system?
- Do you have a way for people to make it safely home if they find they are too exhausted to drive themselves? (Safety drivers – give them a vest to make them easy to see. Give them a short training before the event on how to respond when approached for a ride home, and how to ask consent before offering to assist a disabled person into or out of the car)
- Is this information easily available in your event invites?
time-independent space:
- Does your event have a way to capture and share what transpired so others can view at a later date?
- Is there a way to make breaks and the timing of the event flexible for those with various disabilities?
justice space:
- do you have plans on how to adjust your event to meet the needs of disabled people? How can you collaborate with the community to enact these plans? (Keeping the community in the loop, so they can offer insight can avoid harmful blunders/accidents later down the road).
- For example, while going through the above questions, if you find something you need to tweak or alter to provide that space for disabled folks, is that something you are willing to do? Why or why not? What is stopping you?
- Did you create take-aways for people to take home that informs them of the event’s goals and aspirations? Is there suggestions on how people can virtually or physically assist your organizations and/or events goals? (Make these easy bullet points. For example, ‘write a letter to x senator. here is a script you can use.’ or ‘donate to z fund to aid political prisoners’)
- Is there ways to lead people toward justice and liberation through the above accessible materials, discussions, events, etc?
- When you enact the plans for improving accessibility within your city/town/group, do you collaborate with the impacted community and keep them informed? Allow them to assist with enacting the plans?
Thanks for reading.
#access #accessibility #activism #disabilities #disability #disabilityJustice #justice #mobilityJustice #socialJustice #space