Disabled Rage: Disability Justice and the Politeness Paradox
You know the scene in the Barbie Movie where America Ferrera goes on a monologue about the oxymoronic expectations of women? (If you don’t, go on and watch it. It’s truly standout in a hilarious movie.) Here’s a snippet.
But always stand out and always be grateful. But never forget that the system is rigged. So find a way to acknowledge that but also always be grateful.
You have to never get old, never be rude, never show off, never be selfish, never fall down, never fail, never show fear, never get out of line. It’s too hard! It’s too contradictory and nobody gives you a medal or says thank you!
It resonated with many viewers of many genders, but for me, it made me think of my time in disability justice. Certainly, my perceived gender, my actual gender, my sexuality, my skin color — all of these intersect with my disability and interact in many ways. The fact that people see me as a woman means that the above applies to me to start with, but there’s an added layer when you start talking about disability.
There is an expectation that disabled folks should be grateful for — well, everything. The medical treatment we get, any acceptance society feels it fit to bestow on us, having partners and relatives that don’t abandon us, that legislation made us a protected class, for access. But we should always be fighting for more. But never offend people, always work with the goal of getting able-bodied people to understand! But also build community, show solidarity with other disabled folks and other marginalized folks across the intersection. But don’t expect too much from others, because they’re fighting their own battles (never mind that they might also be our battles, because disability is a marginalization that spans every age, every race, every ethnicity, every religion or lack thereof, every gender and sexuality).
But. But. But. I could go on like this for the length of a movie monologue. It’s exhausting. And on top of the unspoken (and sometimes loudly spoken) societal expectations, there is the ableism itself.
(This is the part where I note that people of color have long had to deal with the same accusations of rudeness and anger when demanding their equality and justice. MLK writes about the white moderate handwringing over the respectability of protest, saying, I agree with your desires, but your methods…people of color have always been expected to be deferential to white people. Respectability politics as a concept began in civil rights circles, and anything I have learned about it is owed to Black liberation theory.)
Systemic Issues
Did you know disabled people are prevented from adopting and fostering children? Did you know people with disabilities are disqualified from organ transplants? Did you know that disabled people were less likely to get adequate care when hospitalized with COVID, leading to higher mortality rates? Did you know that many hospitals worldwide placed Do Not Resuscitate orders on disabled patient charts without express permission?
How about the ADA? A thirty three year old piece of legislation, hanging on by the skin of its teeth, is considered the bulwark against mistreatment in the United States. But what does it do? It protects against public places refusing access, and expands on the 504’s provisions against discrimination in employment by enshrining reasonable accommodations in law.
What it doesn’t do: guarantee anything other than the opportunity to sue if an entity violates the law. It is not, as many people think, a government body like the FDA or NLRB. The onus is on us, as disabled people, to a. experience a discriminatory event, b. find a lawyer, c. sink time, resources, and emotional energy into a lawsuit, and d. risk the ADA being struck down for everyone by an extremely biased conservative Supreme Court. Yeah. It’s a bit of a burden.
Meanwhile, a returning candidate for the highest office in the land is known for mocking a disabled reporter. It clearly wasn’t an issue for Republican voters in 2016. Why would it be now? But hold on, the incumbent President’s administration prematurely declared Mission Accomplished on COVID-19, leaving immunocompromised and disabled Americans isolated and forgotten. CDC director Walensky has stated that it was “really encouraging” that COVID is only killing vulnerable people, and the head of Biden’s COVID Taskforce is a known eugenicist whose claim to fame is an article titled “Why I Hope to Die at 75”, claiming disability and old age are tragedies.
So no help is coming from above. What about our own doctors? Well, more than eighty percent of 714 surveyed doctors believe that disabled patients have a worse quality of life than abled patients. Just under 41% reported feeling confident that they can provide the same quality of care to their disabled patients compared to their nondisabled patients. Well, crap.
Employment gives many people a sense of purpose; maybe that’s an area that’s better. It’s true for disabled people with the ability to work, too, but protections are slim. It’s up to your HR department to decide what a reasonable accommodation under the ADA is. It’s entirely plausible that you might go in asking for, say, a better office chair, and you wind up being put on administrative leave by an HR representative who is overeager to avoid lawsuits. Managers perceive disabled employees as less competent and more aggressive. By the by, in America, it’s totally cool to pay certain disabled workers less than $7.25 an hour.
Surely there must be some respite in our personal lives? Well. Intimate partner violence against people with disabilities happens at a much higher rate. According to a survey by the Spectrum Institute Disability and Abuse Project, 70 percent of responses by disabled people indicated that they at some point experienced abuse by a partner, family member, carer, or acquaintance/stranger. Statistics indicate that disabled people are more than twice as likely to be a victim of violent crime, and in encounters where deadly force is used by police, about half of victims are disabled. Oh, and we don’t have marriage equality.
I haven’t even gotten to schooling. In emergency drills, disabled kids are left out. A friend of mine recounts being left inside the school building on the second floor in a wheelchair while the fire alarm blared. Students with disabilities are disproportionately disciplined, and subject to physical restraint and seclusion. In college, two thirds of students with a disability do not inform their campuses, due to unforgiving professors, a disproportionate focus on self-advocacy by the disability resource offices, and the nonsensical application of “stock accommodations”. These usually boil down to “extra time on exams”, but not every disabled person needs that, and often accommodations they do need are denied.
Inevitably, someone will say, “Well, if you don’t like it here, leave.” Ha. Ha ha. People with disabilities can’t come here and we can’t go there.
Social Problems
Are you tired yet? We’re tired. And this is all just systemic ableism. We’re still subject to individual encounters with people who want us to prove we’re disabled, with people who insist on praying for cures that don’t exist and that we don’t necessarily want, stigma against mobility aids and personal care devices, ableist language, lack of representation or bad representation in media, government, and on the boards of charities about disabilities, and so much more. But always be grateful.
So now you know a portion of why disabled people might be angry. Now you know why ableism is a frequent topic of conversation. Now let’s talk a bit about encountering disabled rage in the wild.
Even the most inclusive spaces have a disability problem. The example that always comes to mind is Pride parades. The fact that they are held in June in wide-open spaces can preclude heat-sensitive people from attending. Long routes mean people with fatigue or limited mobility are left out. Speakers without ASL interpreters exclude Deaf and Hard of Hearing attendees. Sidewalks are often blocked off by police or people standing and observing. Masks are almost never encouraged. And unfortunately, in this political climate, it needs to be said: if something goes wrong, if violence breaks out, people with disabilities are vulnerable.
These are not insurmountable problems. Having someone on the organizing committee dedicated to accessibility and safety goes a long way. Providing pop up tents, medics, interpreters, keeping allies and community liaisons available should trouble arise — these are all steps that can be taken.
Unfortunately, not every organizing committee is open to the feedback or suggestions. Indeed, many spaces are resistant to simple and often very polite requests. I was on an inclusion team governing observances at a prior workplace and every single appropriate suggestion for heritage months, Pride, and remembrances was taken — except Disability Pride Month and Disability Day of Mourning. Marketing was dismissive. “You already have Autism Awareness [should be Acceptance, but okay] Month.”
We met our disability quota, guys! We solved ableism!
Even hardcore reform spaces that preach solidarity and (supposedly) the dignity of every person regardless of race, religion, class, and gender and sexuality have a problem with refusing to wear masks, embracing eugenics, meeting in inaccessible spaces, and saying things like “each according to their ability” and calling everyone “workers”. Some of us can’t work.
That trickles into messaging like “no one who works full time should live in poverty.” Great! Love the thought, just one thing- disabled people tend to work part time jobs at a higher rate than nondisabled people, and again, some of us can’t work at all. Do we deserve to live in poverty?
And when this is pointed out, people get defensive. If there is even the slightest edge to our tone, that becomes the issue rather than the problem we raised. We become “entitled” if we ask people to mask or to make events accessible. We’re “oversensitive” when someone uses r*t*rded or cr*pple and we remind them that these are considered slurs against our community. Heaven forfend if we use the word “ableist”. It’s rather in vogue among the intelligentsia to make fun of people who critique ableism.
We’re called “terminally online”. Many of us are largely house or bedbound, and social media is how we interact with the world. We’re called “armchair activists” for the same reason. Online organizing is looked down upon. This is what I got, and it is still useful. It leads to projects like the Long COVID Moonshot and patient communities around diseases doctors like to thumb their noses at. We provided a lot of information in the early days of COVID (when people still gave a damn about not killing the vulnerable).
So yeah, we’re a little pissed off, and you may not be getting our best, most polite answer. Maybe you’re the seventh person this week who’s insinuated Deaf people need curing. Maybe I’m tired of having to explain that doctors don’t always have their patients’ best interest at heart. Maybe you’re even a doctor who’s actively making fun of people with my disease on Twitter. (Yeah, that’s a thing they do.)
It could well be that I am also in excruciating amounts of pain. Maybe my knee is dislocated. Maybe my health insurance dropped me for no reason (that took a month to fix, thank you Kaiser). Maybe I am dealing with chronic, persistent health issues while trying to convince you that not killing or hurting people is important.
That last bit. I want you to look at that. I want you to let it sink in. Because a lot of the time, what we’re asking for boils down to stop killing us. Stop hurting us. Should I be polite while I ask that? Or does it demand a little urgency?
We have to be perfect models of disability when advocating. We have to dress modestly and neatly. We have to look reasonably healthy. We have to be well-spoken, never lose our train of thought, never get nervous, never be rude, always represent every disability but never talk about the ones we have. Don’t bring up your other marginalizations. But recognize that the struggle is intersectional, but never talk about how, because your target audience is already on edge. Be inspiring, but make sure that you don’t get used as inspiration porn. Cite your sources, but remember — mainstream media doesn’t carry our stories well very often.
Be charming! Be charismatic! Reflect well on the community and the culture. Because sometimes, we’re the only disabled person you know. Be understanding of ignorance, but always call it out, even when the blowback will be fierce. But no one will thank you for expanding their understanding. They may resent you for it. Because they’re always afraid of becoming you. Make them see you as a person when society is bound and determined not to. But they’ll never meet you where you are.
And do all this when you’re carrying the weight of all that structural ableism, all the socially acceptable ways to cut you, but always be grateful.
I’m tired, everyone. Really, really tired.
Meet me where I am. And understand when I get snappish. It’s not just you. It’s all of that.