So intertwined are these oppressions that any attempt to rid the nation of racism without doing away with ableism yields practically nothing. The same is true in reverse. Disabled communities attempting to rid the nation of ableism find themselves having made very little headway because they are still practicing racism.
Selections on kindness from “Sitting Pretty: The View from My Ordinary Resilient Disabled Body”:
I am a magnet for kindness. Like the center of a black hole, my body attracts every good deed from across the expanse of the universe to the foot of my wheelchair. I move through parking lots and malls, farmers’ markets and airports, bookstores and buffets, and people scramble to my aid. They open doors and reach out their arms to help, they offer prayers, grab my handlebars for a push, watch over me, and hold out wads of cash.
Okay, so not every single person who comes within my orbit suddenly sprints to my service. There are plenty of people who don’t seem to notice me, and some people who are actually repelled by my magnet. They look down, pull their bag or their child closer to them, draw their legs up to their chest as I roll by. (Yeah, it doesn’t feel great.) But it’s the abundance of kindness that gets me all tangled. It’s the fly that won’t stop buzzing, won’t hold still long enough for me to swat it, won’t die.
It’s harmless, really. What damage can a tiny fly do? But then why do I feel like tearing down the house every time I hear its familiar buzz? And here’s the real nasty cherry on top of the fly: more than any other subject I write about, people do not like what I have to say about the complications of kindness. Because how could kindness be anything but good? What do I possibly want from the people if not kindness? And really, what kind of ungrateful hag must I be to complain about people trying to do nice things for me??? I’ve talked enough with folks to know—this conversation is uncomfortably disruptive.
As a culture, Americans are pretty well convinced that disability is something they’ve figured out. In fact, this was a puzzle solved years ago. How could ableism exist when we’ve memorized the rules? Don’t say the R-word; don’t make fun; disability doesn’t define anyone; just try to be helpful; and the rule that guides them all: Be kind. I’ve seen so many people perform these creeds in one form or another.
Like the folks who try to do me a favor by keeping me separate from this disabled body of mine: All I see when I look at you is a beautiful woman. I don’t even notice your wheelchair! I don’t think of you as disabled. It’s meant as a kindness, but it feels like erasure. These words handpicked to soothe the wounds of disability are weapons themselves, reinforcing the deep-seated belief that beauty and value can’t coexist with the deviations we all know I embody.
I think I understand how it happens: If you live in a community where disability is framed as tragic, sad, and inferior, then claiming not to see that so-called defect feels like a favor. We try to extract the disability from the person, because we think disability is ugly, and the rules tell us that this separation is nice. But do we attempt to extract thinness, Ivy League education, or wealth from a person? Of course not. We see these characteristics as inherently positive. Maybe individuals hold on to these features as part of their identity, maybe they don’t, but as a culture, we don’t take it upon ourselves to graciously inform people that we see past their fit bodies, fancy diplomas, and piles of cash. There is no urgency to ignore thinness, no discomfort in recognizing education, no knee-jerk desire to erase wealth. Deep within our cultural understanding of what it means to be a human with a body, we position disability below ability and at odds with health, beauty, wholeness, success, and happiness. But I don’t need my paralyzed legs to be erased in order for me to be seen as able, healthy, beautiful, whole, successful, or happy.
Time and time again, people in my life and readers of my work become uncomfortable with, ruffled by, and hostile to the stories I share about sitting on the receiving end of “kindness.” Maybe it’s because so many of us claim “kindness” as one of the most important qualities a human can possess. Disrupting our understanding of kindness is a direct threat to our sense of self and understanding of the world around us. But as a veteran Kindness Magnet, I’ve found people’s attempts to Be Kind can be anything from healing to humiliating, helpful to traumatic. It’s complicated.
Selected quotes on the ableist framing of “normal”, “natural”, “defectiveness”, and “overcoming” from the opening of Eli Clare’s “Brilliant Imperfection: Grappling with Cure”.
On “overcoming” disability
Overcoming bombards disabled people. It’s everywhere.
To pose individual hard work, rather than broad-based disability access, as the key to success for people with dyslexia is absurd and ableist.
Sometimes disabled people overcome specific moments of ableism—we exceed low expectations, problem-solve lack of access, avoid nursing homes or long-term psych facilities, narrowly escape police brutality and prison. However, I’m not sure that overcoming disability itself is an actual possibility for most of us. Yet in a world that places extraordinary value in cure, the belief that we can defeat or transcend body-mind conditions through individual hard work is convenient. Overcoming is cure’s backup plan.
Declaring disability a matter of social justice is an important act of resistance—disability residing not in paralysis but in stairs without an accompanying ramp, not in blindness but in the lack of braille and audio books, not in dyslexia but in teaching methods unwilling to flex. In this declaration, disability politics joins other social change movements in the ongoing work of locating the problems of injustice not in individual body-minds but in the world.
On “normal” and “natural” and cure
As an ideology seeped into every corner of white Western thought and culture, cure rides on the back of normal and natural.
First, cure requires damage, locating the harm entirely within individual human body-minds, operating as if each person were their own ecosystem. Second, it grounds itself in an original state of being, relying on a belief that what existed before is superior to what exists currently. And finally, it seeks to return what is damaged to that former state of being.
The vision of me without tremoring hands and slurred speech, with more balance and coordination, doesn’t originate from my visceral history. Rather it arises from an imagination of what I should be like, from some definition of normal and natural.
At the center of cure lies eradication and the many kinds of violence that accompany it.
On “defectiveness” and eradication
Defectiveness wields incredible power because ableism builds and maintains the notion that defective body-minds are undesirable, worthless, disposable, or in need of cure.
Cartwright and the rest use the ableist invention of defectiveness in order to explain and justify the practices of enslavement, imprisonment, institutionalization, and state violence. In essence, they fortify white supremacy by leveraging ableism.
The list of body-mind differences, illnesses, and so-called defects that the medical-industrial complex wants to eradicate goes on and on. This kind of elimination benefits some of us in significant ways—saving our lives or increasing our comfort. At the same time, it also commits damage, routinely turning body-minds into medical objects and creating lies about normal and natural.
as a widespread ideology centered on eradication, cure always operates in relationship to violence.
On the bright side
We take constraints that no one would choose and build rich and satisfying lives within them.
ABLEISM a·ble·ism ˈābə-ˌli-zəm noun A system that places value on people’s bodies and minds based on societally constructed ideas of normalcy, intelligence, excellence and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, colonialism and capitalism. This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s appearance and/or their ability to satisfactorily [re]produce, excel and “behave.” You do not have to be disabled to experience ableism.
a working definition by Talila “TL” Lewis in conversation with Disabled Black and other negatively racialized folk, especially Dustin Gibson; updated January 2020
Source: TL’s BLOG – TALILA A. LEWIS
It’s been a thoroughly demoralizing few weeks on the advocacy front with a progressive Democrat endorsing ABA in education and the vile flood of ableism from the left directed at disabled self-advocates for sharing tales of ableism in the gig economy.
I cling to the bright spot that is Alfie Kohn’s powerful piece of advocacy against behaviorism in ed.
See also his previous piece on behaviorism.
By her own admission being autistic does not limit you, it just requires ‘the right circumstances’ – but it can be hard to find those environments if you don’t have a diagnosis and know about your condition. In my own experience, diagnosis has not limited me, it freed me. Ableism, in its many forms, is what limits me.
Our movement, however, needs nothing of respectability politics. Accepting — conceding, surrendering, submitting to — that will only erode our movement until it crumbles entirely. Respectability politics is what’s gotten us into reliance on foundations and nonprofits, and elected officials and bureaucrats, and policies and programs that only benefit the most privileged and resourced members of our communities at the direct expense of the most marginalized. Radical, militant anger — and radical, militant hope, and radical, wild dreams, and radical, active love — that’s what’ll get us past the death machines of ableism and capitalism and white supremacy and laws and institutions working overtime to kill us.
Why is fairness to people with disabilities a different problem from fairness concerning other protected attributes like race and gender?
Disability status is much more diverse and complex in the ways that it affects people. A lot of systems will model race or gender as a simple variable with a small number of possible values. But when it comes to disability, there are so many different forms and different levels of severity. Some of them are permanent, some are temporary. Any one of us might join or leave this category at any time in our lives. It’s a dynamic thing.
I think the more general challenge for the AI community is how to handle outliers, because machine-learning systems—they learn norms, right? They optimize for norms and don’t treat outliers in any special way. But oftentimes people with disabilities don’t fit the norm. The way that machine learning judges people by who it thinks they’re similar to—even when it may never have seen anybody similar to you—is a fundamental limitation in terms of fair treatment for people with disabilities.
I am repeatedly struck with the realisation that carers are unnecessarily complicating childhood and family life – while believing they have no choice. They would probably say that it isn’t their fault, autism did it. Or that they’re just trying to help their child to succeed. Or that noone else can understand (“Walk in my shoes!”). After many years of hearing this same bullshit, I realise it simply isn’t true. Autism didn’t make your kid’s childhood disappear – them being put into hours of therapy every week did that. Autism didn’t make your child feel like someone was always watching them – the constant attempts to correct their natural ways of being did that. Autism didn’t make your child stressed – ableism did. You did.
The movement that I want to see, is one toward more simplicity for our disabled children. Autism isn’t destroying your children – you are. And you can’t stop doing it if you won’t evaluate your role in it.
Being an autistic parent of an autistic child means navigating a world that doesn’t see us as whole while advocating for two people at the same time. Specialists don’t take autistic parents seriously, don’t trust that we know our own needs, let alone a child’s. How can we when we’re in need of special services and accommodations, too?