From Forbes:
“5 Reasons Why Disability
Activism Is Still Hard”
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 identifying 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.
^ This has some really
interesting points most people don’t know about. ^
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