Disability justice movements: history and practice

Socialism and movements for disability justice–Dana Cloud

In March, 1990, The Americans with Disabilities Act (ADA) was stalled in Congress. But on the eve of the vote, activists engaged in momentous direct action. In addition to marches and rallies at the Capitol, activists in ADAPT, long experienced in militancy, led what would become one of the most compelling protests in the history of the movement. Activist Michael Auberger, in an interview with historian Fred Pelka, recounted these events:

It didn’t feel like ADAPT to just march and not do any sort of direct action. So the crawl-up was something that we set up to meet that need. So, after the speeches, those who wanted to, participated in the crawl-up, which was people getting out of their wheelchairs and crawling up the steps of the Capitol. It was definitely theater, but it was also a statement: As far as you’ve gone, you’re not there yet. Probably 100 people did the actual crawl-up. Everybody who started made it up—we made sure of that. I was surprised at all the emotion that came out of it, and everybody at the bottom who watched, they couldn’t believe what they saw. I guess it was a catharsis, is the best way to describe it. And I don’t think any of the people that actually crawled up thought it would be that way. Somewhere in there, with all the energy that was expended, it just put everybody right there on the edge of, and in touch with, their anger, and in touch with a lot of history about access. All the years of oppression seem to come out right then and there. Tears. People were crying. Then the next day we did the demonstration in the Rotunda, chanting “ADA Now!” and “Vote Now, Vote Now!”

106 activists, having chained their wheelchairs together with kryptonite locks, were arrested in a process that took six hours. Activists blockaded buses and jammed the courthouse and jail until police were forced to release them.

In the wake of this protest, the Americans With Disabilities Act was passed on July 12.

Before the ADA, the Rehabilitation Act of 1973 was the most significant piece of legislation, itself won through hard struggle by Disabled in Action and its leaders, including Judy Heumann (who died this year), who led 80 activists in a sit-in on Madison Avenue. Disabled activists also demonstrated in Washington, D.C. to protest the Nixon veto of the act.

Section 504 of that Act prohibited exclusion of disabled people in any service or program receiving federal assistance. This section defined people with disabilities as a category facing discrimination, redefining disability from a problem to an identity deserving protection under the law. The Carter administration hesitated to enforce its provisions, however, until another act of militant protest forced its hand.

What is now known as the 504 sit-in took place when, on April 5, 1977, activists gathered to demonstrate at the San Francisco Health, Education, and Welfare offices around the country to demand the signing of regulations for Section 504.

Heumann and others planned a demonstration and occupation. After 500 activists demonstrated on Civic Center Plaza, 150 people with disabilities and their allies entered the Federal Building to occupy HEW regional director Joseph Maldonado’s office. Organizations of allies outside the building prepared to support the occupation.

Cross-movement solidarity was crucial to this effort, as disability rights groups had formed coalitions with civil rights groups, the Black Panther Party, a number of queer liberation organizations, the United Farm Workers, the International Association of Machinists, the Gray Panthers, and others.

Protesters with diverse needs occupied that space for 26 days. As Kitty Cone described the scene, protesters addressed each other’s medical needs, helping people to obtain and take necessary medications, turning some occupiers over in their sleeping bags to prevent bedsores, reading to the blind, assisting people in eating, and assisting people to the bathroom. People attended to each other–from each according to their ability, to each according to their need. The occupation developed committees and routines to care for and feed this large group. They held daily meetings. They played games, made art, and debated about politics.

Notably, the Black Panther Party arrived to volunteer to feed the occupiers and stood up to FBI attempts to prohibit them, saying, “We support you because you’re asking America to change, to treat you like human beings, like you belong. We always support people fighting for their rights.” The Panthers provided food for the duration of the occupation.

On April 28, HEW secretary Joseph Califano signed a complete set of 504 regulations.

Along with the ADA, section 504 of the Rehabilitation Act of 1973 has been the foundation of successful disability rights legislation, litigation, and reforms to this day.

Movements for disability rights and justice in the United States have been diverse, creative, and militant. The movement’s organizations and activists overlapped and were inspired by–and often operated in solidarity with–the civil rights, Black power, feminist, labor, and queer social movements.

In the Bay area, and particularly at the University of California at Berkeley—then in cities across the country—Deaf people, the blind, neurodivergent people, people with mobility and neurological disabilities, and people diagnosed with mental illness demanded access to jobs, public spaces, adaptive communication technologies, education, transportation, health care, access to services, and the freedom and resources to choose where and how to live. The reforms won over the course of this diverse movement resulted from the continual pressure on the part of activists in the courts, schools, hospitals and “homes”–and in the streets.

Every moment of past struggle that results in greater access and equity should inform our work today. Demanding that capitalist society recognize people whose bodies do not conform to the imperatives of the system is revolutionary in itself. That said, both independent living and disability rights frameworks were limited by, in the first case, an emphasis on individual responsibility without demands on the system and state, and in the second, by faith in the reforms that the system was willing to offer.

Hard-won rights legislation can only go so far when the oppression of people with disabilities is closely tied to the imperatives of capitalist society, whose definitions of appropriately productive bodies generate ongoing exclusion, stigmatization, and violence. For-profit health care, insurance, and the pharmaceutical industry deprive disabled people, who are disproportionately poor and unemployed, of vitally necessary resources. Religious beliefs, eugenics, moralism, assimilationism, and the medical model have framed disability awareness and policy over the course of capitalism’s history in ways that justify ongoing oppression.

For these reasons, a key tenet of contemporary disability justice theory and activism today is anti-capitalism. The principles of disability justice articulated by the Sins Invalid Collective include the following:

We are anti-capitalist, as the very nature of our mind/bodies often resists conforming to a capitalist “normative” level of production. We don’t believe that human worth is dependent on what and how much a person can produce. We critique a concept of “labor” as defined by able-bodied supremacy, white supremacy, and gender normativity. We understand capitalism to be a system that promotes private wealth accumulation for some at the expense of others.

Keith Rosenthal’s anthology of the writings of revolutionary socialist and disability activist Marta Russell, along with Roddy Slorach’s A Very Capitalist Condition, explains the connections between the oppression of disabled people and the capitalist system. Russell, a civil rights activist with cerebral palsy and film industry worker, was involved with disability activist organizations like ADAPT (Americans Disabled for Accessible Public Transit, then simply ADAPT) and Not Dead Yet (a group contesting the practice of cost- and stigma-driven physician-assisted suicide).

Russell argues that capitalism in particular not only oppresses and excludes disabled people; its exploitation of workers also actively disables people through dangerous, repetitive, and numbing work. Moreover, the imperative of imperialist war in capitalist society sends working class people to the front lines, many of whom return injured, ill, and traumatized. Disabled veterans then face lives of exclusion, poverty, homelessness, addiction, and suffering.

From its outset, the capitalist system defined workers as free insofar as they have the right to choose between work and death. Economic discrimination thus became necessary regarding bodies that are not capable of producing surplus value at the prevailing rate. The definition of the disabled as defective on a medical model reinforces oppression and pathologizes us. Even as the meager welfare system has provided some social services, it also regulates and surveils the lives of recipients.

The category of disability is a means of controlling the labor supply, pushing less “productive” exploitable workers out of the mainstream workforce and sustaining a hyper-exploitable labor reserve. Disabled workers face inherent economic discrimination, as employers are unwilling to bear what they regard as excessive additional employee costs, and the state is reluctant to acknowledge the rights and the needs of the disabled because, in neoliberal capitalism, elites are unwilling to extend state resources for care and accommodation. What welfare exists, in the form of supplemental security disability income payments, is completely inadequate, especially when even sporadic and part-time employment disqualifies recipients. This is why disabled people are disproportionately poor, living in conditions without adequate healthcare, housing, or assistance.

At the same time, ironically, disability has become big business as corporations offer “solutions” like privatized institutionalization and costly private care. Retailers pay lip service to inclusion in advertising images of happy disabled bodies. Disabled bodies thus become commodities.

Today, the problems facing disabled people include ongoing poverty, unemployment, lack of access to care, and violence. In particular, abolitionists and disability justice advocates have called attention to the fact that half of people killed by police are disabled.

We cannot look to reforms—however crucial they may be—the legal system, the legislative process, or the Democratic party to solve these problems. The two major acts defining disability rights in the United States were passed during the administrations of Richard Nixon and George H.W. Bush, not Jimmy Carter—who was reluctant to enforce the most significant section 504 of the Rehabilitation Act—or Bill Clinton, who ended the welfare system and replaced it with one in which people must be able to labor in the paid workforce to qualify for even temporary aid.

As Marta Russell wrote, “Disability politics must challenge the system if they are not to be flawed strategies or forms of bourgeois ideology.” The socialist constructed category of disability is a product of capitalist society and one of the most brutal expressions of a system that produces disability and then asks people to pay to address it while at the same time excluding, segregating, abusing, and discarding people whom the system regards as unproductive.

In conclusion, disability justice is closely tied to the labor struggle and struggles against incarceration and policing. Issues of disability are tied to the fight for universal healthcare. In addition, the disability rights struggle offers lessons in theory, organization, and militant protest. Because socialists are committed to building both the labor and abolitionist movements and because we are anti-capitalist, revolutionary militants, disability justice should be an automatic priority for us today. It should be up front alongside gender liberation, labor emancipation, and anti-racism in our publications and organizational statements. Every union we work with should take up the struggle for disability justice. We should seek out and support disabled activists in our local work. And we must make every single meeting, event, and protest—virtual or embodied—completely accessible to everyone’s bodies and minds.

The struggle of disabled people—our struggle—calls upon us to rethink the very idea of disability: a construct produced in, by, and for capitalist society, in which employers and politicians attempt to negate our sense of power and agency. They have failed. The crawl-up protest for the ADA in 1990 and the 504 sit-in demonstrated the capacity of militant activists to dramatize and challenge the oppression and exploitation at the heart of the capitalist system. Present-day activists should look to these examples for lessons in militancy, leadership, and politics.

Socialist activism for disability justice now!–Nina Lozano

Disability justice must be at the forefront of any socialist project. The Sins Invalid 10 pillars of disability justice tell us to focus on intersectionality, leadership of the most impacted, anti-capitalist politics, a commitment to cross-movement organizing, the recognition of wholeness, sustainability, a commitment to cross-disability solidarity, interdependence, collective access, and collective liberation.

Audre Lorde reminds us that “we do not live single issue lives.” Ableism, coupled with white supremacy, supported by capitalism, underscored by heteropatriarchy, has rendered the vast majority of the world invalid. Aurora Levins Morales reminds us that “we are led by those who most know these systems.” We must be committed to anti-capitalist politics. In an economy that sees land and humans as components of profit, we are anti-capitalist by the nature of having non-conforming body-minds.

In terms of how social justice movements understand disability and contextualize ableism, disability justice lends itself to the politics of alliance. People have inherent worth outside of commodity relations and capitalist notions of productivity. Each person is full of history and life experience. We pace ourselves individually and collectively in order to sustain ourselves and others over the long term. Our embodied experiences guide us towards ongoing justice and liberation.

We must honor the insights and participation of all of our community members knowing that isolation undermines collective liberation. We must organize to meet each other’s needs as we build towards liberation, knowing that state solutions inevitability extend into further control over our lives. Demanding resources from the state is necessary, but disabled people must set the terms for their engagement with the system.

As queer, Brown, and Black bodied disabled people we bring flexibility and creative nuance that go beyond able bodied/minded normativity to be in community with each other. No body or mind can be left behind. Only moving together can we accomplish the revolution that we require.

The disability justice movement did not begin in 1990 with the Americans With Disabilities Act, but with Harriet Tubman in 1820. It includes Frida Kahlo, Audre Lorde, Cherrie Moraga, and Gloria Anzaldúa. It began with my ancestors.

The disability justice movement must be viewed in a Marxist lens. Rosenthal argues that disability is not static, but fundamentally linked to the needs of capitalist accumulation. So I agree with Rosenthal when he states,

Disability is a socially created category derived from labor relations, a product of the exploitative economic structure of capitalist society which creates (and then oppresses) the so-called disabled body as one of the conditions that allow the capitalist class to accumulate wealth. Therefore, capitalism and disability are structurally, necessarily, and ontogenetically linked in a dialectical process of mutual reinforcement.

How do we push back against this capitalist framework? How do we ensure that no body or mind is left behind?

I am informed by the work of Leah Lakshmi Piepzna-Samarasinha in their book Care Work: Dreaming Disability Justice. I am also informed by the work of Shayda Kafai in their book Crip Kinship: The Disability Justice & Art Activism of Sins Invalid. While socialist projects tend to focus on public protest that makes demands of the state and system, Piepzna-Samarasinha’s work reminds us of the importance of mutual aid. Mutual aid must not be dismissed by socialists. Mutual aid is a political because care collectives provide necessary supports for disabled activists and because the organization of such care builds organizations and networks across movements and identities. Piepzna-Samarasinha states,

What does it mean to shift our ideas of access and care (whether it’s a disability, childcare, economic access, or many more) from an individual chore, an unfortunate cost of having an unfortunate body, to a collective responsibility that’s maybe even deeply joyful? If collective access is revolutionary love without charity, how do we learn to love each other?

For some, disability justice may mean rejecting the state in favor of organizing care among our chosen kin. Piepzna-Samarasinha talks about these grassroots groups in struggles as “care webs.” Revolutionary care may mean cooking meals for others, listening without judgment, sharing meds, supporting each other during psychotic breaks, or even lifting each other onto a toilet or a scooter. Crip-on-crip care is revolutionary.

Questions to ask as you start a care web or collective:

1. What is the goal of your care web?
2. Who needs care and of what kind?
3. Who is in it? What are their roles: caregiver, care receiver, both, admin person, fundraiser?
4. How are you resisting the charity model in your work?,
5. What are the best practices that allow the people receiving care to receive care well?
6. What are the best practices that all the people offering care to offer care well?

I have severe fibromyalgia. I live in constant pain. I hurt every day. Most days the pain is unbearable. I now must use a cane or a scooter. Unless I am using one of these devices, my disability is invisible. Invisible disabilities are one of the largest issues plaguing the disability justice movement, especially when we must include neurodivergent disabilities. Assuming people are lazy or lying is straight up ableism.

We must engage in accessible activism even as our organizations operate in ways that are, if unintentionally, ableist. This conference, for example, is not accessible to participants who cannot travel. As a foundational principle, collective access advocates that spaces and events can push past ableism and instead creatively establish access for all our body and minds. All conferences should have a virtual option to view and to present. Consider providing seating for audience members who might need extra space for their bodies. Conferences should provide multiple language options including ASL interpretation, as well as audio descriptions of visual material. Remind participants that they are entering scent-free venues.

What about protests? I must use a wheelchair, a walker, or a cane. I cannot keep up with the pace of most marches and find myself at the back trailing with others who have been left in the dust. Protest leaders should call on disabled people to lead the march at a pace that will include everyone.

We must interrogate other forms of activism as ableist. I cannot sit or stand on a picket line for hours a day. There should be rotating bodies to help fill this void. This would at least ensure that disabled people can keep up and participate fully.

The politics of care work challenge ableist and classist stereotypes about our lives. No, my life does not need yoga, losing weight, or being more mindful. Care should not be individualized into a bourgeois, privatized model of self-care. We need what bell hooks calls “a community of resistance,” or what Shayda Kafai calls “crip-centric liberated zones”:

a multidirectional community love practice. It is a place of our own creation where we, the disabled, queer of color many, can exist and thrive liberated from the oppressions that regulate our daily lives.

Such liberated zones engage also in cross-movement solidarity in recognition of shared oppressions and struggles.

Disability justice should be recognized as central to our work. I call on my comrades to enact these principles, to recognize the needs and capacities of disabled revolutionaries in every aspect of our practice from slogans and principles to the organizing of meetings, routines of our organizations, and protests.

Suggested Reading:

Fred Pelka, What We Have Done: An Oral History of the Disability Rights Movement (University of Massachusetts Press, 2012).

Julia Carmel, “’Nothing About Us Without Us’: 16 Moments in the Fight for Disability Rights.” The New York Times, July 22, 2020.

Marta Russell, Capitalism & Disability: Selected Writings by Marta Russell, ed. Keith Rosenthal (Haymarket Books, 2019).

Roddy Slorach, A Very Capitalist Condition: A History and Politics of Disability (London: Bookmarks, 2015).

Shayda Kafai, Crip Kinship: The Disability Justice & Art Activism of Sins Invalid (Vancouver: Arsenal Pulp, 2021).

Suggested Viewing:

Disability  Rights Education and Defense Fund, “The Power of 504” (2008), https://www.youtube.com/watch?v=SyWcCuVta7M.

Nicole Newnham and Jim LeBrecht, dirs., Crip Camp (2020). Available on Netflix.

Featured Image Credit: Disabled and Here project, photo taken by Chona Kasinger; modified by Tempest.