The Complications of Kindness

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.

Source: Taussig, Rebekah. Sitting Pretty (pp. 128 – 130). HarperOne. Kindle Edition. and Here’s Why Kindness Toward Disabled People Is Complicated | Time

See also:

Ms. Morin herself has neurodivergent children, for whom virtual learning has been “a relief in a lot of ways,” removing the social pressure and sensory overload of an average day. “They’ve been so much calmer about school,” she said.

As nondisabled people rush to return to face-to-face interactions, accessibility threatens to narrow back to pre-pandemic levels. But the window is still open to make accessibility permanent, ideally under the guidance of people with disabilities, who used online tools out of necessity well before they became universal.

Source: Disability, Work and Coronavirus: What Happens Now? – The New York Times

My kids also prefer the sensory and social calmness of schooling at home.

Telemedicine and distributed education are accommodations our disabled and neurodivergent family had to fight for, usually unsuccessfully, that are now no longer accommodations because they have suddenly normalized. I’m cynical enough to expect to go back to fighting as soon as some sense of the old normal is reclaimed.

I updated “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life” with selections from “Black Autistics Exist: An Argument for Intersectional Disability Justice | South Seattle Emerald”.

The term intersectionality is used more broadly today to describe the cumulative effect within one’s lived experience of being in the world with two or more socially constructed identities; and the world’s perception, storying, and interaction with them.

The crux of intersectionality as a philosophy is that it does not allow for socially constructed identities to occur discreetly in the sociopolitical and sociocultural sphere. When someone like me walks into the room, I don’t have the opportunity to negotiate with others which of my identities they intend to hyperfocus on or criticize. I am a package deal. We all are. This is what I feel is so important when advocating for affirmation of intersectional autism. Just as we seek to discuss misogynoir, we need to bring in the complexity of these sorts of social dynamics into the autistic experience. Intersectionality can serve as a silencer of autism if the other seeks to home in on some other stereotype or archetype they find more threatening or – said with disgust – fascinating.

Autism doesn’t occur in a vacuum, and neither do any aspects of our intersectionality. They all happen at once, in the moment, and influence our being in the world, and how the world is with us at all times.

Intersectionality is not only arguing for factualizing these marginalized identities as inextricably intertwined, but also acknowledging that their accumulative interactions are absolutely inseparable.

It is unjust to only think of intersectionality as a crossroads of one dependent and independent variable. Instead, we must grow to see intersectional disability as a radial: multiple streams of energy coalescing at one central point of consciousness and lived experience.

Source: Black Autistics Exist: An Argument for Intersectional Disability Justice | South Seattle Emerald

Disability, Hiring, and the Glass Staircase

I would argue that for a lot of graduate jobs, there’s a significant barrier to entry for neurodiverse and disabled people. I like to call this barrier the “glass staircase”. YouTuber Gem Hubbard is a wheelchair user and has a great video on the concept, but I’d like to extend her metaphor beyond physical impairments because I believe it provides a useful framework to understand the job-hunting process for those with invisible or neurological disabilities too.

For all intents and purposes, the “staircase” is the relatively streamlined application process for jobs, that appears simple to non-disabled people, but which has plenty of obstacles for disabled people.

While it’s possible to negotiate the staircase when companies meet an individual’s access requirements, this often requires disabled applicants to put in significantly more time and effort than their non-disabled peers. We are constantly dependent on other people to allow us to continue in the application process without disadvantage.

Having to explain the same thing again and again at different stages, to different people, at different employers, is mentally strenuous and time-consuming – and used to regularly makes me wonder if what’s at the top is even worth it if it’s so much of a hassle getting there.

Source: Serena Bhandari – Jobstacle Course | Touretteshero

Via:

Imani Barbarin launched another great accessibility hashtag, #AdaptTheFeed.

The term intersectionality is used more broadly today to describe the cumulative effect within one’s lived experience of being in the world with two or more socially constructed identities; and the world’s perception, storying, and interaction with them.

The crux of intersectionality as a philosophy is that it does not allow for socially constructed identities to occur discreetly in the sociopolitical and sociocultural sphere. When someone like me walks into the room, I don’t have the opportunity to negotiate with others which of my identities they intend to hyperfocus on or criticize. I am a package deal. We all are. This is what I feel is so important when advocating for affirmation of intersectional autism. Just as we seek to discuss misogynoir, we need to bring in the complexity of these sorts of social dynamics into the autistic experience. Intersectionality can serve as a silencer of autism if the other seeks to home in on some other stereotype or archetype they find more threatening or — said with disgust — fascinating.

Autism doesn’t occur in a vacuum, and neither do any aspects of our intersectionality. They all happen at once, in the moment, and influence our being in the world, and how the world is with us at all times.

Intersectionality is not only arguing for factualizing these marginalized identities as inextricably intertwined, but also acknowledging that their accumulative interactions are absolutely inseparable.

It is unjust to only think of intersectionality as a crossroads of one dependent and independent variable. Instead, we must grow to see intersectional disability as a radial: multiple streams of energy coalescing at one central point of consciousness and lived experience.

Source: Black Autistics Exist: An Argument for Intersectional Disability Justice | South Seattle Emerald

It’s easy for people to dismiss online activism as somehow fake, or at least not significant. When it comes to disability in particular, that’s a mistake. Twitter is the most accessible real-time conversation. It is not perfectly accessible, but its text-based public nature allows people to talk to one another who have radically different modes of interacting with the world. People who have difficulty leaving their homes for reasons of physical or social disabilities, people who are blind or deaf (or both), who do not speak verbally and communicate by typing (regardless of appendage used to type), and those with other disability-related access needs can all use Twitter to talk to each other. I have been in wildly accessible physical spaces, with captioning, ramps, sign, and warnings about a lack of scent. It is possible to make accessible spaces, but Twitter brings us together by design. It’s a space, therefore, where the disability community can manifest as a powerful constituency. And it doesn’t hurt that both journalists and political operatives also hang out on Twitter.

Source: Where the Heck Is Joe Biden’s Disability Plan? | The Nation

Also: Bring the backchannel forward. Written communication is the great social equalizer.

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.

Source: » Brilliant Imperfection: Grappling with Cure | Eli Clare