What if Disability Rights Were for Everyone?
By Ari Ne’eman
In the fight between red state governors and the federal government over measures to control the pandemic, the Biden administration has deployed an unexpected weapon: disability rights law.
Citing the Americans with Disabilities Act (A.D.A.), President Biden’s Department of Education launched investigations into five states that have prohibited schools from requiring masks. Already, a Federal District Court has blocked Iowa’s ban on mask requirements, citing the A.D.A. The legal reasoning is simple: by prohibiting mask mandates, these states may be pushing disabled students — who are at greater risk from Covid — out of the classroom.
When the public thinks about disability rights, they usually imagine laws that protect those with visible disabilities — wheelchair users, for instance, or people with Down syndrome. But the scope of disability law is far broader, encompassing less obvious diagnoses. Young people with diabetes, asthma or other conditions that put them at risk from Covid may not think of themselves as people with disabilities — but by legal definition they stand to benefit from disability law’s protections.
President Biden’s efforts to protect mask mandates represent only the latest effort to use disability laws to protect broad swaths of the public. In recent years, the A.D.A. has been used to challenge immigration restrictions, police brutality, mass incarceration and many other broad social problems.
The disability rights movement emerged to champion the interests of people who had been pushed to the margins of our society, seeking to rectify a long and dark legacy of disabled Americans being forced into institutions, discriminated against in the workplace, and denied access to mainstream schools. For those who experienced such horrors, the movement exists to secure the rights of a specific oppressed minority group.
But the increasingly broad reach of disability rights protections also offer a set of tools to help many who never thought of themselves as disabled and perhaps never will. Which raises a question: Can a movement born to address discrimination against a particular minority evolve into something greater — a larger push for rights for all? And what would that evolution mean for the future of disability rights advocacy?
Eighteen months ago, the world broke. As Covid spread throughout the country, so too did the experience of disablement. Like the polio generation, students suddenly found themselves able to attend school only through the miracle of technology. Those adults who couldn’t work from home began each morning with a complex calculus of risk and worry familiar to many chronically ill people with compromised immune systems. But for those lucky enough to bring our jobs home with us, a new universe of possibilities opened up.
There is a certain irony in these changes. “People with disabilities found that accommodations they were denied for decades suddenly became universally available during the pandemic,” said Colin Killick, executive director of the Disability Policy Consortium, a disability rights advocacy organization (disclosure: I serve as a volunteer member of the consortium’s board). The sudden willingness to offer flexibility long deemed impossible for the disabled minority before Covid was frustrating, Mr. Killick told me, “but it also presents an opportunity to imagine what a world in which accommodations were available to all might look like.”
Disability rights law goes beyond many other civil rights statutes. The A.D.A. prohibits obvious discrimination, but it also requires reasonable accommodations and modifications — changes to typical policies and practices to give disabled people equal access and opportunity to participate. This is an obvious necessity for people with disabilities, but it also offers an intriguing precedent for the broader public.
In May, the House passed the Pregnant Workers Fairness Act, legislation that would require employers to offer pregnant workers the same reasonable accommodations protections made available to disabled workers. Pregnancy is not a disability under the A.D.A., but disability law has inspired a more expansive vision of workplace rights. Just as wheelchair users have the right to ramps and elevators, pregnant workers may win the right to more frequent breaks or to sit down in jobs that usually require standing.
Beyond legal protections, the work of the disability rights movement is also at the core of one of the Biden administration’s major policy initiatives: a proposed mega-expansion in Medicaid home care that stands to benefit both those with lifelong disabilities and many seniors for whom disability has never been a part of their personal identity. As we begin to plan for post-Covid health policy, the mounting death toll in nursing homes and the longstanding abuses in such settings have forced many to rethink the wisdom of congregate care. In doing so, aging advocates are heading down a path disability groups traveled long ago. Activists are succeeding in extending the disability rights revolution in the interest of fundamental human rights and dignity.
During the 1980s, Judy Heumann, one of the pioneers of the modern disability rights movement, co-founded the World Institute on Disability, which worked to export the ideas of the disability rights movement into aging policy. “Frequently, I talk to older people who are telling me about the problems they’re facing from aging, and it’s things that disabled people have been working on our whole lives,” Ms. Heumann told me recently, “Maybe one of the outcomes of Covid will be that we’ll make the reforms necessary to allow people to remain in their homes and communities and not end up in these segregated places where over and over again we see atrocities.”
Yet there is a tension here, one that raises an important challenge for leaders in disability rights. Though the disability rights movement emphasizes the importance of proud disabled identity, many — perhaps most — who benefit from disability rights don’t know it. Few see themselves as part of a disabled minority group. The disability rights movement remains obscure, even as its legal and policy victories have become more relevant than ever. Increasingly, activists are struggling with a simple question: How do you go about representing a constituency that doesn’t know you exist?
I recently spoke to Ryan Easterly, the executive director of the WITH Foundation, an organization that promotes health equity for adults with developmental disabilities. “For professional advocates, disability is often acknowledged as a core part of who we are,” he told me, “but the average person with a disability may not always feel that way.” Mr. Easterly began his activism as a teenager participating in the Alabama Governor’s Youth Leadership Forum, a program designed to build advocacy skills and connection to the larger disability community for youth with disabilities. Such programs represent an important investment in the disability movement’s future — but efforts to encourage a proud disability identity may not be enough to reach many who benefit from disability protections.
According to Mr. Easterly, those who are diagnosed with a condition early in life have more opportunities to see their disability as part of themselves. For others who acquire a disability, especially from trauma, age or acquired illness, the path is more of a struggle. And regardless of a disability’s origin, other forms of marginalization can complicate things. “Often, getting a diagnosis is the first step to disability identity,” Mr. Easterly explained, “But that takes resources — resources that aren’t as readily available in communities of color, who don’t get access to that identity.”
He raises an important point: Though worthwhile, the modern effort to recast disability as a positive form of self-identity has reached some more than others. Disability identity remains an important tool — but positioning the disability rights movement only around people who identify as disabled leaves out those for whom life circumstance blocks access to identity, leaving many struggling with the problems of disability without the words to claim it.
Framing disability rights as identical to other identity-based movements can present other problems, too. Early disability rights leaders borrowed heavily from the language of race-based civil rights activism. In 1966, the National Federation of the Blind’s Jacobus tenBroek made the comparison explicit in a seminal law review article that shaped the movement’s future direction: “As with the Black man, so with the blind. As with the Puerto Rican, so with the post-polio. As with the Indian, so with the indigent disabled.” Later, activists with the organization ADAPT, previously called Americans Disabled for Accessible Public Transit, sought to frame themselves as the heirs of Rosa Parks, carrying signs reading “I can’t even get to the back of the bus.”
For some parts of the disability community, such comparisons were not entirely without merit. After all, disability rights emerged out of the systemic exclusion of disabled people from schools and communities. Throughout the 20th century, hundreds of thousands of disabled Americans were subject to institutionalization and sterilization by a eugenics movement that sought to wipe them from the earth.
Still, disability is not the same as race. In relying so heavily on such a comparison, the disability movement may do itself and others a disservice. The breadth of the definition of disability encompasses many life experiences that don’t fit neatly into the frame of a minority struggling against an oppressive majority. At times, disabled activists’ analogies to race suggest a kind of stolen valor, especially from a movement that frequently falls short on racial diversity.
What’s more, in drawing such a sharp line between those whom disability rights protects and those it makes demands on, the disability movement may be leaving power on the table. Covid-19 has illustrated that disability rights are of near-universal relevance. An opportunity is emerging to frame disability advocacy in the language of shared social and economic liberties we should all protect, for reasons of self-interest as much as abstract notions of equity.
To accomplish this, activists may need to consider universalizing the disability movement, presenting disability rights as broad protections available to all Americans, not just those who self-identify as disabled.
There is some precedent for this. Conceptually, scholars have long promoted a “social model” of disability, which presents disablement as emerging out of the interaction between an individual and their environment. Just as dyslexia would be unlikely to be diagnosed in a pre-literate society, so too are other forms of disablement only noticeable when context makes them important.
The experiences of those with at-risk diagnoses during Covid offers a powerful validation to what at first seems like abstract theory. By one estimate, nearly half of American adults have a chronic condition that places them at greater risk. Their medical issues existed before Covid, many even met the technical criteria for A.D.A. protections — but they are now more relevant than ever before.
Disability legal protections are similarly flexible. When the Supreme Court issued a series of opinions restricting the definition of disability, leaving many people with less obvious impairments out of the scope of nondiscrimination law, advocates convinced Congress to pass the A.D.A. Amendments Act of 2008. The law ensured the A.D.A..’s definition of disability was interpreted broadly.
There are other examples to build on. Laws like the Family and Medical Leave Act (F.M.L.A.) and HIPAA’s privacy protections (under the Health Insurance Portability and Accountability Act) overwhelmingly benefit disabled people — but because they create rights available to all, they are thought of as universal, not targeted, protections. Similarly, the Affordable Care Act’s prohibition on insurers charging more to those with pre-existing conditions represented one of the greatest disability policy achievements in a generation. Yet few saw it as a gift only for the disabled because proponents sold it to the public as a universal benefit that helped everyone.
Not every disability policy priority can be recast in such universalist terms. Sign language interpreters or supported employment services could never be replaced by broad and diffuse benefits spread across the entire population. Relatively few people need these things, and those that do need them to be financed with a level of resources far above what others get. In such cases, the framing of an oppressed minority group is useful. Even if the disability movement is to expand beyond identity politics, it won’t be able to leave them entirely behind. The prism of identity remains essential for many whose disability experiences are defining.
Still, the disability rights movement could position many other disability priorities as public goods, akin to clean air or privacy rights. Laws like the A.D.A. would still serve as a backstop for the minority that identifies as disabled, but could also come to be seen as useful protections for a larger public, much like HIPAA or F.M.L.A.
One can imagine future disability advocacy proceeding on two tracks. A small vanguard of “loud and proud” activists, motivated by disability culture and the discursive claims of identity politics, can mobilize to secure new laws and public programs. Meanwhile, these initial policy victories will be defended and grown because of their concrete impact on the lives of the far larger group of people who benefit from disability protections even without identity. Reaching the latter group will require activists to highlight “bread and butter” issues the public can easily understand. Keeping students safe from a deadly pandemic, guaranteeing rights to pregnant workers, and helping seniors stay in their own homes all seem like good places to start.
The Biden administration’s leveraging of disability law is a welcome effort to protect the rights of disabled students in a pandemic. But it is also more — it suggests a complex future for disability politics, where disability laws may come to be seen as both the liberation of a discrete minority group and a broad protection that benefits all regardless of self-identification. Such a change will present a challenge to a disability rights movement used to an exclusively “minority group” model of activism — but also a tremendous opportunity to make disability rights relevant to an American public that already receives so much from it.
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Mr. Ne’eman is a doctoral candidate in Health Policy at Harvard and a visiting scholar at the Lurie Institute for Disability Policy at Brandeis. He previously served as executive director of the Autistic Self Advocacy Network and as one of President Barack Obama’s appointees to the National Council on Disability, and is currently writing a book on the history of American disability advocacy.