History Teaches . . . The Power of (Imperiled) Disability Rights
Civil Rights Histories are 'All One Piece String': Disability and "DEI"
In the name of conquering what it repeatedly refers to, without definition and without explaining exactly what’s wrong with it, as “Diversity, Equity, and Inclusion (DEI)” efforts, the Trump administration claims it has the power to eliminate completely the U.S. Department of Education and to attack and defund public bureaucracies and even private institutions (law firms, law schools) that have committed themselves to expanding opportunities for and representation of a range of people who aren’t male, straight, white, cisgender, native-born, from upper-midd-class backgrounds or major inherited wealth, or are non disabled.
People aren’t talking much about the disability piece of the story — there’s so much else! And trans, nonbinary, intersex, and queer people are really taking it on the chin!! And the frank racism, even courting resegregation a la Woodrow Wilson’s administration in the federal workforce, is almost unbelievable to many of us who study 20th-century politics. But disability rights and the fates and fortunes of disabled employees, students, and consumers of medical services are also central to the story of this moment — and the histories of disabled people’s hard-won fights and already-inadequate handholds that enable access in the U.S. are genuinely in play here.
One way disability civil rights have been expressed is as “The Right to Live in the World” (1966) in the field-defining essay by UC-Berkeley professor and long-time President of the National Federation of the Blind Jacobus tenBroek — what he also called “integrationism,” a right that has come to include access to public education in relatively unsegregated and unrestricted environments, access to public buildings and other institutions that receive public funds, post-secondary education where appropriate and desired, and lots else. (I’ve written about tenBroek and the history of the NFB, which is a truly remarkable history of pursuing civil rights in the shadow of the New Deal and well before many scholars acknowledge that there was agitation by or for disabled people.)
Image: Jacobus tenBroek, founding president of National Federation of the Blind, scholar, and activist, standing in dark suit and tie with white cane and two unidentified men in suits, from Lou Ann Blake, “Who Was Jacobus tenBroek,” Braille Monitor (ink print edition online), https://nfb.org/sites/default/files/images/nfb/publications/bm/bm11/bm1107/bm110703.htm
We can also consider what’s at stake with the help of a quotation from the classic essay, “The Mountain,” by my Vermont neighbor and colleague and teacher, the poet, nonfiction writer, and activist Eli Clare:
Clare’s picture is kind of a best- (or better-) case scenario for being a disabled or other marginalized person under conditions of lightly or ambivalently enforced civil rights laws in the late 20th and early 21st centuries. What the Trump administration is seeking to do now is to completely throw out the “topo maps” — which help disabled and non disabled people alike figure out whether the mountains they seek to climb are too rough or steep or uncleared for them to navigate (there are also tactile maps for people with vision impairments that help with spatial awareness) — and burn all the bridges to embers.
The Department of Education does many different things. Among the most significant are administration of Title I of the Elementary and Secondary Education Act of 1965, as amended, which provides funds to schools in lower-income areas throughout the U.S. Project 2025, the blueprint for the current Trump administration, proposed eliminating Title I, which reaches over half of U.S. public schools. There is an overlap between disability and poverty, so any Title I cuts, or hampering of the bureaucracy’s ability to administer the program even if were to survive the destruction of the Department of Ed., mean less staff and support for disabled kids.
The Department of Education also implements and monitors compliance with one of the first national civil rights laws for disabled people, the Individuals with Disabilities Education Act (IDEA), formerly Public Law 94-142, passed in 1975. This was kind of a Brown v. Board for disability, accomplished through Congressional legislation not a court case, and establishing an expectation under law that disabled young people would be educated — and included in regular school buildings and classrooms, with supportive services, instead of being sent someplace else on the short bus and segregated among people who were supposedly their peers (but actually, back in the day, included a polyglot profusion of people with all kinds of differences and disabilities, physical, cognitive, behavioral, etc., creating a completely incoherent educational environment).
So the administration’s proposal sounds bad, right? Eliminating government capacity to overcome educational inequality, segregation, and lack of services, in a country built on the promise of mobility and opportunity, no kings, no aristocracy, transformation of your fortunes through hard work and effort, blah blah blah. Pretty bad. It’s also inextricable from racial segregation, we must remember, because the battle over education funding at the national level has since the 19th century been a battle over the right of states, localities, and school districts to segregate on the basis of race — as we see with the repeated failures of the U.S. government, even as the country was becoming more unified through a national marketplace after the Civil War and to some degree creating national government bureaucracies to create coherence, to fund education at the national level. (The reason it took until 1965 for us to have an Elementary and Secondary Education Act is because of racial and sectional discord — as explained in an old essay on Black responses to the repeatedly introduced by never-passed Blair Bills to fund elementary and secondary ed. in the 1880s and 1890.)
This is all about class hierarchy, too, of course, in that what we as a society settled on, in the main, instead of relatively uniform national funding was a system of local property-tax-based education funding that replicated income and wealth disparities on the topo map of residential segregation.
Beyond this, 17 state Attorneys General, all from Trumpy red states, have filed a lawsuit, Texas v. Becerra, claiming that the other great disability civil rights law of the 1970s, Section 504 of the Rehabilitation Act of 1973, is unconstitutional and should be discarded. As explained by law professors Karen Tani and Samuel Bagenstos, on social media (after I was a little confused from reading the court filings on my own), the Republican officials’ opening gambit against the law is that it now includes gender dysphoria, meaning an intense gender-based bodily dis-ease, a sense that one is in a body that does not align with one’s identity (the diagnosis that trans people typically seek and receive as a precursor to receiving interventions like hormone therapy) as a condition that would trigger civil rights protection. That was an addition from the Biden era and one for which they do not care.
But then it goes much further, to the protections at the historic heart of 504 for people with disabilities, including severe allergies, illnesses, and injuries. As the Disability Rights Education and Defense Fund puts it: “The states disagree with a few things in” the updated rules the Biden administration published in 2024 for implementation of Section 504. “But the lawsuit asks the court to get rid of all the updated rules – and to get rid of Section 504 itself, not just the rules they disagree with. The lawsuit says that Section 504 goes against the United States Constitution. The lawsuit says that no one should have to follow any part of Section 504. If the 17 states win, this would be a disaster for people with disabilities.”
How did 504 come to be? Activist and disability historians know it was a struggle: Although this civil rights language was included in the 1973 version of the Rehabilitation Act — itself a law that had vastly expanded services for disabled people after World War One and then again after World War Two — the Nixon, Ford, and Carter administrations did not issue the regulations that would actually make the law effective until activists forced officials to do so. When hopes for action from Democrat Jimmy Carter and his Secretary of Health, Education and Welfare (HEW) Joseph Califano, Jr., did not materialize, disabled activists and their allies seized ten federal government offices across the U.S. on April 5, 1977.
Most of the demonstrations didn’t last but the one in San Francisco lasted for a month and it made the difference. This occupation of the federal building in the city’s downtown, which housed the local office of HEW, was born from the local disability rights infrastructure, a generation after tenBroek and centered at the Center for Independent Living in Berkeley, and supported by local politicians, including Representative George Miller (for whom I worked when he chaired the Select Committee on Children, Youth, and Families) and Mayor George Moscone (assassinated in 1978 with gay leader Harvey Milk), and by the Black Panther Party headquartered in Oakland.
Image: Activists Hale Zukas, Ron Washington, and Judy Heumann (all wheelchair users) respond to a question at a press conference held at the San Francisco airport before protesters leave for Washington, D.C., to pressure Carter administration officials to finalize and realize the Section 504 regulations. Lynette Taylor, standing, provides American Sign Language interpretation. San Francisco Examiner Archive. Courtesy of the Bancroft Library, University of California, Berkeley, from National Park Service, “504 Protest: Disability, Community, and Civil Rights,” https://www.nps.gov/articles/000/504-protest-disability-community-and-civil-rights.htm
The demonstrators, many of whom were afraid that they wouldn’t be able to sustain the access they needed to medication and other life-sustaining needs, nonetheless pledged to stay inside the building until the Carter administration completed the regulations, without watering them down significantly, and issued them. They won, transforming the landscape for disability rights and also laying the foundation for the far better known Americans with Disabilities Act of 1990.
DREDF created a film about the sit-in called “The Power of 504,” which is available closed-caption and with audio description, in a bunch of languages: https://www.youtube.com/playlist?list=PL4EEE286B0AA7A774
The disability scholar Susan Schweik augmented our understanding of the protest with her essay, “Lomax’s Matrix: Disability, Solidarity, and the Black Politics of 504,” in Disability Studies Quarterly (2011) — reminding us that the categories “Black” and “disabled” are overlapping categories, and teaching about an activist named Alan Lomax who was in both groups and bridged between the disabled activists and the Black Panthers: https://www.dsq-sds.org/index.php/dsq/article/view/1371/1539
There are other very great risks afoot for disabled people and those who have disabled friends and family members for whom they provide assistance and care — for example, in what could be a proposed $880 billion cut in the Medicaid program, which provides vital support for paid caregiving. But these civil rights threats, won so dearly and already so little acknowledged relative to their huge importance, hit especially hard.