Mistrust
Disabled people’s attitudes towards politics and activism are complicated.
Distrust in politics is almost standard among Americans today. Some of that distrust extends to various forms of activism as well –– or to anyone trying to change public policy, or people’s beliefs and behaviors. But what about people with disabilities, who have historically benefitted from the fruits of politics and activism, but also felt let down by them more than once?
Despite the urgency of problems and issues disabled people face, a great many of us remain alienated and suspicious of social and political action. Exploring the reasons why is important if we are to fully understand ourselves, and if others –– especially politicians and policy makers –– are ever to understand us.
It helps to start by recognizing some of the reasons for disabled people to be optimistic about politics and activism today:
- There was more detailed focus on disability issues by the 2020 Presidential campaigns than ever before. At least ten candidates for President issued specific, multi-point disability plans, nearly all of which included at least some of disabled people’s most cherished priorities.
- Voter participation by people with disabilities significantly increased in the 2020 Elections. Rutgers University researchers Lisa Schur and Douglas Kruse report that although there is still a participation gap between disabled and non-disabled voters, it shrunk in 2020. Disabled voter turnout was 5.9 points higher than in 2016, and 17.7 million disabled people voted in the 2020 Election overall, a potentially powerful contingent of voters.
- There is a rare chance right now for passage of major investments in home care through the Better Care Better Jobs Act, and for significant reform and updating of SSI in the SSI Restoration Act. Both are high priority issues for the disability community that are finally being at least taken seriously by a Presidential administration and Congress.
All of these developments suggest that disabled people’s involvement in activism and politics really can work. And they didn’t come out of nowhere, or because politicians are suddenly more compassionate or interested in disability issues for their own sake.
These gains and opportunities exist today because of decades of organized protest, policy activism, and political engagement starting in the early 1970s by movements of disabled people, fighting for ourselves. This movement has won specific victories, like passage of the Americans with Disabilities Act in 1990, as well as more gradual shifts, like inclusion in schools, deinstitutionalization, and the gradual expansion of home care.
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These are impressive gains, won by disabled people’s involvement in activism and politics. But yesterday’s victories can only do so much to persuade most disabled people that fighting for change is time well spent. Many if not most of us remain wary and skeptical about organized activism and electoral politics. Some disabled people are distinctly hostile to them.
Precise reasons are hard to pin down. But there are broad factors worth considering:
1. Politics and activism aren’t accessible.
Despite clear and longstanding mandates, voting accessibility is inconsistent from region to region. Would-be disabled voters still regularly contend with inaccessible polling places, antiquated voting systems, and poorly trained poll workers.
Now, some measures that made voting a good deal more accessible in 2020 are under direct attack in many states. This includes efforts to restrict or eliminate voting by mail and early voting. Meanwhile, countless other petty measures are being passed that make the act of voting more physically restrictive and demanding rather than less. Whether intentionally or not, these measures turn voting into a test of endurance, instead of a civil right.
Political events are often inaccessible too. This includes party and campaign meetings, public forums, campaign rallies, and voter outreach activities. Disabled people who want to participate in politics constantly run into problems with:
- Wheelchair accessibility
- Sign Language interpreting
- Captioning for video content
- Transcripts for audio content
- Website accessibility
- Plan language versions of key documents
Even disability organizations can fail at some of these basic components of accessibility. And there are other, more subtle problems with inclusion in disability culture as well.
Disability activists sometimes put unreasonable physical and emotional demands on each other. Sometimes this happens because of sincere enthusiasm and momentum for a vital cause. Other times it’s part of a vain effort to demonstrate disabled people’s ability to achieve in mainstream social action, without compromise to our impairments. Either way, it’s ironic and wasteful that so many disabled people are allowed to conclude that their own disabilities make it impossible for them to do disability activism.
These practical deterrents don’t just keep disabled people out of politics and activism physically, but discourage us from even trying.
2. Mainstream politics tends to either ignore or misunderstand disability issues and culture.
Until fairly recently, disability issues and disabled voters were virtually invisible in political campaigns. When they were addressed, it was only in the most vague and inconsequential ways. There has always been lots of “support” for our rights, but little in the way of policy that was politically challenging, or likely to make a real difference in our lives. This is beginning to change, but the progress so far is lopsided.
It’s progress that ten Presidential candidates offered substantial disability plans last year, but unfortunate that they were all from one party. Republican Presidential candidates offered no plans or positions on disability policy. And few “lower ballot” candidates of any party bothered to put out disability plans, even though Congress and state legislatures have far more practical impact on disability issues than presidents do.
So despite some recent encouraging signs, “addressing disability issues” still too often means candidates running sentimental ads and photo ops with unnamed kids in wheelchairs –– or addressing the needs of disabled people indirectly and mistaking the concerns and priorities of parents, teachers, and “caregivers” as being the same as those of disabled people themselves. This condescension has done a lot to sour disabled people’s feelings about politics, despite other undeniable gains.
3. The goals are good, but it’s too hard to see or recognize results.
Disability activists and policy developers are often on the right track, and are being honest when they describe the better lives disabled people can have if we all join the push for needed reforms. But in disability activism and politics, satisfaction is usually not just denied or delayed, but also disguised.
Even when change does come, we usually have to wait far too long before seeing the direct, personal results we were promised. And it’s not always obvious that a modest improvement we are experiencing now is a result of intense and committed disability activism that happened five or more years before.
There is also often a strong status quo bias. Some disabled people don’t like their living, working, or financial circumstances, but come to believe that any sort of “change” is more likely to make their lives worse than better, no matter what activists say. This may partly explain some of the backlash, even among some disabled people, against changes like increasing funding of home and community based services, and ending sub-minimum wage.
A lot of disabled people feel burned, not just by those who oppose change, but by the disabled activists who promise it, but rarely seem to deliver. This breeds a very specific and corrosive kind of mistrust –– a mistrust of optimism itself.
4. It’s hard to keep track of what’s happening.
There is usually just too much going in disability activism and politics for most disabled people to keep track or up to date.
The disability community is fragmented. There is no one source of reliable information, no single recognized leader to rally support at key moments. This diversity is a strength. And it can be bad in a different way when a very few disabled people or disability organizations have a monopoly on attention and power. But being this decentralized is also a weakness, especially in situations where coordination and mass dissemination of information is vital.
Internet communications have more recently helped sew some of the various disability communities together. But social media is also making the task harder, because it speeds everything up even more. We have the tools to let millions of disabled people know instantly when calls are needed to pass a bill. But we can rarely count on anyone to put those tools to use in time. And most disabled people have barely even begun to explore disability networks online, much less in their own towns and local organizations.
Disability politics and activism may actually have been easier when there were fewer realistic possibilities for us. More opportunities mean more work. The disability community’s goals may be outpacing its capacity to achieve them. That’s a positive sign for the future. But it’s a real and difficult practical problem for the present.
5. Nearly every victory the disability community wins brings risks.
The Americans with Disabilities Act was a massive moral and legal victory for disabled Americans. It remains one of our proudest accomplishments and the basis for most of our current claims for access, equality and fairness. But almost as soon as it was passed in 1990, efforts were underway not so much to overturn the law, but to make it manageable and blunt its more demanding and significant mandates.
Large companies especially were quick to develop effective strategies to “comply” with the ADA, while avoiding more meaningful improvements for actual disabled people. People complain about disability activists and lawyers using the ADA to make money off seemingly small accessibility violations. But far more consultants and lawyers have been making a living for decades by teaching businesses and employers more how to avoid compliance, or accomplish it superficially and on the cheap.
This isn’t unique to the ADA. Disability policy changes are almost always so complicated that it makes them less effective. Reforms like the ABLE Act have done genuine good for disabled people. But like so many other disability policy bills, in order to pass it was limited, trimmed, and loaded with conditions in ways that leave significant numbers of disabled people out and make even approaching it intimidating. The combination of narrowed eligibility and hard to understand rules make even some of the best disability reforms and programs all but invisible to the people they are meant to help.
Advocacy success breeds other problems, too. Now that we are seeing more disabled people elected and appointed to key government positions, it’s fair to ask how much a numerical increase in high profile “disability representation” really improves things. There’s a danger that truly effective activists can win well-deserved positions in government and politics, only to be constrained by the shackles of government itself, and held back by the politics that helped win them power.
This isn’t even about corruption or “selling out.” The dilemmas disabled leaders and representatives face are real. It takes more than most people can manage to balance a true commitment to disability activism, the obligations of responsible office, and the need for political unity and mutual support within any administration. We want to see disabled people in government where they can do some good. But is that even possible?
Distrust in politics and doubts about the usefulness of disability activism are natural, even healthy feelings for disabled people to have. At best they prompt us to ask uncomfortable but necessary questions. The problem comes when healthy skepticism becomes toxic cynicism. For the disability community to keep moving forward, we have to be wary and aware, but without giving in to pessimism and apathy. If we can manage that, it could even be a lesson to all Americans, with or without disabilities.
