Disability Activism
Disability activism can be exciting, empowering, and enormously fulfilling — especially for people with disabilities themselves. It can also be exhausting and frustrating. And to outside observers, newcomers, and longtime activists, disability activism can seem futile, maybe even fatally flawed.
In 2017, disability activists were instrumental in fighting off efforts to abolish the Affordable Care Act and severely limit Medicaid. In 2020, most of the Presidential candidates felt it politically necessary to offer some kind of detailed disability policy plans. A few of them were notably comprehensive and ambitious.
But despite these encouraging signs of greater political influence over the last few years, the disability community still seems politically underdeveloped and underpowered. It’s worth thinking about exactly why. Here are five likely factors:
1. Disabled people are discouraged from being part of the “Disability Community”
Ideas about “disability pride,” or even the existence of a “Disability Community,” are still fairly new. Many still view these ideas skeptically, including many disabled people.
There are still more immediate and obvious social rewards for disabled people who strive to downplay their disabilities and assert they are “just like everyone else.” Disabled activists are sometimes admired. But they are always one provocative action, blunt remark, or unwise tweet away from being branded a complainer, a malcontent, or a “bitter cripple” obsessed with self-pity and lacking the “positivity” necessary for personal happiness and success. Not wanting to become “one of those people” can powerfully discourage disabled people from disability activism.
Especially for both young disabled people and older people with newly acquired disabilities, disability also tends to at first seem like nothing but a depressing negative, something to gloss over, not talk about and rally around. That leaves a comparatively small subset of the disabled population who are likely to view their disability experiences as something to think about when voting, or a cause for sustained and ambitious advocacy for much beyond immediate needs.
For organized, cooperative disability activism to work, disabled people need to be willing to identify themselves as part of a disability community, and invest in the goals and aspirations of people with disabilities other than just themselves. That’s not an easy ask. For unfortunate but entirely understandable reasons, far from every disabled person feels the need or ability to respond to the call.
2. Disabled people have vastly different needs and goals
Disability is not a small, niche bundle of one or two concerns. There are scores of equally important but vastly different disability issues that need attention. They run the gamut from ramps on public buildings, to earning and saving thresholds in Social Security — from Sign Language Interpreting and remote participation options for public meetings, to policing practices and a dozen difficult questions about disabled students in education — from employment rights, to health care access and affordability — from home care to airline handling of wheelchairs — from access to restaurants, to lifelong supports for intellectually and developmentally disabled youth.
It’s hard enough for disability activist organizations to agree on what should be the “top five” disability policy priorities at any given moment. It’s nearly impossible for them to unite on a single issue to the point where it can be noticed by mainstream observers. The defense of the Affordable Care Act was a rare example. Even then, a comparatively small core of disabled activists who manage to unite around a clearly defined and broadly-supported handful of goals still leaves millions of disabled people who may feel like their priorities are unjustly ignored or sidelined. And plenty of high-priority issues never make the cut to receive sustained and collective effort.
It seems likely that many would-be disabled activists don’t join organized disability activism either because they don’t see their preferred issues being addressed, or because they aren’t interested in working on issues they perceive to be for someone else. It’s just hard to build unity around such a wide range of issues.
3. Ableism and other prejudices within the disability community elevate some disabled people while marginalizing others
There isn’t a formal, codified hierarchy within the disability community and disability organizations. They are more or less all committed to some vision of equality of opportunity and full inclusion across all types of disability. But in practice, even the groups and coalitions most committed to genuine inclusion and equality still struggle to live up to those ideals.
One profound divide is between people with physical disabilities and those with mental or cognitive disabilities. Physically disabled people — such as wheelchair users — have tended to dominate leadership and popular images of the “Disability Community. People with intellectual, learning, or mental disabilities have typically been sidelined, or left to their own separate coalitions. While disabled people fight ableism from the non-disabled majority, they perpetuate it among themselves. Meanwhile, race, gender, sexuality, education, wealth, and other facets of marginalization and privilege also continue to generate informal but powerful hierarchies in disability communities and organizations.
Disability organizations, even when not led by non-disabled people, (a structural problem in itself), have historically been led by physically disabled, white, better educated people who more easily fit into upper middle and professional class circles, and who present a very standard, mainstream, conservative, and reassuring image of disability to the public. Disabled people of color, gender non-conforming people, and those who come from poor or working-class backgrounds are rarely in leadership, or put forward to represent disability communities.
All of this continues to send a message to millions of disabled people that even within disability organizations committed to equality and inclusion, they are likely to be marginalized. In turn, this undermines real disability solidarity.
4. Like the rest of society, disabled people are divided and polarized
Good measurements of disabled people’s political views are hard to find. But evidence from recent elections suggests that the disabled population of the United States is about as politically divided as the population as a whole. Both conservative and progressive wheelchair users care about accessible restrooms. Parents of kids with disabilities care about education access, and disabled adults want better job opportunities, whether they voted for Trump or Biden. But broader political beliefs and identities often seem to overwhelm these small areas of potential “red and blue” overlap on specific disability issues.
Liberal, conservative, progressive, radical, populist, or libertarian ideologies can also powerfully influence how disabled people view basic needs and problems they all share. And ultimately, most disabled people seem to vote based on background ideology and political identity. Specific disability issues rarely seem to make the kind of difference one might expect between disabled people voting for one candidate or party over another.
This isn’t necessarily a bad thing. Even for disabled voters, there is more to politics and political belief than one or two disability issues. But it also means that it’s harder to make the case to parties and candidates that disability issues and positions can make a real difference in coalition building and electability. And it makes it harder for ideological foes to work together on common disability matters.
5. Congress and state legislatures are divided and distracted
Political polarization and other divisions in among disability communities can be hard to pin down exactly. But the divisions in Congress and state government are almost purely a numbers game — easily mapped out in votes, executive offices, and legislative seats.
No matter how unified the disability community is or may someday become, it will still be extremely difficult to pass any substantial disability legislation in states or Congress as long as they are both evenly and deeply divided along partisan and ideological lines. It’s worst of all in Congress, where the continued threat of filibusters in the Senate mean that only a few budget-related bills can ever pass with less than 60% support. That is nearly unheard of in the last twenty or so years for any bills of substance. And there are few indications that voters will give either party a victory lopsided enough to significantly break the gridlock anytime soon.
Plus, government isn’t just divided, it’s distracted. At the moment, Covid, inflation, and the war in Ukraine dominate just about everything — with worries and fears for democracy itself looming on the horizon in this year’s Midterm Elections and the next Presidential Elections in 2024. It might be possible to pass a narrow disability bill here and there. But big reforms that could make a big difference seem unlikely.
It’s always been hard to get voters, candidates, and elected officials to pay attention to disability issues. It’s always been hard to get actual changes and investments across the finish line. It’s harder now than ever before for reasons that are mostly beyond the disability community’s control.
These are just five factors constraining the disability community’s influence. One could easily describe five more reasons, or ten. But what can be done? Most of the solutions are broad and conceptual. How disability activists and organizations can accomplish them is hard to say in detail. But a few general directions can still be useful to keep in mind:
- Keep working on more thorough inclusion within the disability community — leaving nobody behind or relegated to a lower priority.
- Don’t be afraid to expand the disability community’s horizon and work with others, including on issues that aren’t exclusively disability issues.
- Continue to support the ways that non-political disability culture fosters a sense of belonging and positive community among disabled people, so that more of them feel good about identifyig and working with disability communities.
- Deliberately and consistently fight against disillusionment, hopelessness, and narrow, “Zero Sum” thinking.
So ironically, one of the results of seeing how many barriers the disability community faces, might be understanding the need for more optimism, not more cynicism.
