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February 1 - February 5, 2023
This is one of the most beautiful parts of being a human—the drive to connect and understand, heal and blossom.
stories are fucking powerful.
If we live long enough, all of us, without exception, will become disabled. This is a prerequisite to having, living in, being a body. The idea that some of us are firmly fixed in the “able-bodied” category is a fiction.
ableism is the process of favoring, fetishizing, and building the world around a mostly imagined, idealized body while discriminating against those bodies perceived to move, see, hear, process, operate, look, or need differently from that vision.
The worth of a body is measured by its capacity for work and/or the longevity of life it’s able to sustain.
Some examples to start the sketch: the assumption that all people who are deaf would prefer to be hearing—the belief that walking down the aisle at a wedding is obviously preferable to moving down that aisle in a wheelchair—the conviction that listening to an audiobook is automatically inferior to the experience of reading a book with your eyes—the expectation that a nondisabled person who chooses a partner with a disability is necessarily brave, strong, and especially good—the belief that someone who receives a disability check contributes less to our society than the full-time worker—the
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Ableism separates, isolates, assumes. It’s starved for imagination, creativity, and curiosity. It’s fueled by fear. It oppresses. All of us.
“When you grow up in a world that doesn’t see you or welcome you or include you or represent you, you believe the world isn’t for you,” I finally told David. “It’s for all the other people.”
Here’s to dismantling ableism, building a bonfire from its pieces, and toasting marshmallows over the flames.
Disabled people are expected to cope with their own social ostracism, to handle being misunderstood and misrepresented, and at the same time to put at ease those who perform the ostracism.
I became accustomed to older women at our church stooping down to my ear, uncomfortably close to my face, and fervently whispering that I was so lucky to be loved by such a man. Can you believe how much that young man loves her? they’d ask each other. Amazing.
Brides walking down aisles are symbols of purity and goodness and beauty; we see them as the promise of the beginning of life. Mobility aids are sad symbols of defeat and disease; we see them as the promise of old age, the end. The mixing of these two symbols unsettles.
“Would you date a woman in a wheelchair?,” I’m struck by the unfortunate, unnecessary barriers seeping through so many responses. I just can’t imagine how it would work. What a tiny planet to create for yourself. What a limited way to experience love, intimacy, sexuality, partnership, and play.
Anytime we open up our hearts to another person, we risk it all, and keeping our hearts closed is the most straightforward guarantee for loss.
“Instead of fixating on disability as The Problem, the social model focuses on the experience of disability, the context of disability, the environments creating disabling moments. The social model looks at this image and says, ‘Let’s shift our focus from the woman in the wheelchair to the building with only one point of access. How limiting!’ The social model says, ‘Let’s build a ramp! An elevator! Let’s redesign this building with fewer stairs, and while we’re at it, let’s open up this floor plan!’”
A group is marginalized because society marginalizes them. Society also has the power to change that. What would it mean for disabled folks if society saw us as acceptable, equal, valuable parts of the whole?
I’m late to dinner, because I’m just so busy and important, but Nathan waits anyway, because he just loves me so much.
This idea that disabled people exist with one sole desire, one holy passion, one desperate fixation on an able body, is overemphasized and obsessively repeated.
it. It’s an old, uninformed, one-dimensional read on disability that burns on the stinky fuel of nondisabled fears.
And in case this isn’t clear, let me emphasize: more is at stake than hurt feelings, irritations, and misunderstandings. Stories written about marginalized people embed themselves in our culture and are used to justify our politics, to arrange our school systems, to determine a hospital’s budget.
We should bring disabled perspectives to the center because these perspectives create a world that is more imaginative, more flexible, more sustainable, more dynamic and vibrant for everyone who lives in a body.
As we reach for narratives that test the boundaries of identity and reimagine the expectations of gender, race, and sexuality, disability is ready to contribute to a conversation that challenges old paradigms and asks new questions about what it means—what it could mean—to be human.
Maybe hard work has its limits.
Maybe the state of your body isn’t actually the ticket to happiness. Maybe when someone’s difference scares you, that’s the precise moment to lean in, shut up, and listen.
Maybe there aren’t happy endings, maybe life is more like a bowl of soup flavored with contentment and angst, victories and heartbreaks, joys and defeats, rage and peace, and maybe it’s a special thing when you get to share that soup with anyone.
Not all of our bodies have the same access to care, and let’s be clear: all of our bodies deserve care.
I didn’t know how good it would feel to fit into the standard (ableist) equation of worth: Hours + Production + Wages = Value. This equation is loud, powerful, and everywhere.
This ableist model tells us that the human body is a work machine whose value is determined by its production—like a toaster that can toast six slices of bread instead of just the usual two. The more you do, the more hours of overtime you work, the less sleep you get, the more duties you fulfill, the faster you get the work done, the less help you require, the more you’re worth.
A system that measures our worth by an arbitrary amount of work that our bodies and minds are supposed to be able to produce within narrow parameters of time and space punishes all of us. We all eventually sag under its unsustainability.
A feminism that considers the injuries and oppressions of only white women ultimately punishes women as it continues to participate in racism. I can also see that when feminism equates womanhood with vaginas, it continues to fuel the harms of transphobia. When feminism expands its understanding of what it means to be a woman, it’s made stronger, better, richer.
I see it: disability that represents only people like me is missing the point, and feminism that considers only nondisabled bodies is a shortsighted feminism that eventually runs out for every woman claiming its protection. We need each other.
The point here is to pay attention to the human person in front of you.
When I imagine the shape of kindness that actually feels like kindness, it necessarily includes the pieces of this moment with Amanda: dignity and an unwavering understanding that falling is not the worst thing that can happen to a person.
The goal is not to avoid falling or needing help. The goal is to be seen, asked, heard, believed, valued as we are, allowed to exist in these exact bodies, invited to the party, and encouraged to dance however we want to.
We stop refining or expanding our accommodations only when we’re satisfied that those we want at the party can get there.
What would happen if we decided disabled bodies were worth including?
Access is a way of life, a relationship between you and the world around you; it’s a posture, a belief about your role in your community, about the value of your presence. There’s a fundamental difference between the experience of the person who wakes up taking for granted that they will, of course, have access, and the one who wakes up and wonders whether they’ll have access, how they’ll find or fight for their access, what they’ll do when they don’t have access.
why it’s so hard to achieve genuine change: the vast majority of nondisabled people don’t see—and certainly don’t feel—the experience of disabled folks. There are others who recognize the textures of inaccessibility—fat and queer folks, so many aging bodies, people of color and those encountering language barriers, anyone who knows poverty—all have an extra set of fears, costs, and concerns.
This future doesn’t only recognize but honors the fact that our bodies grow and tire and rebel and tremble and fight and change and scar and defy categorization. This future won’t appear out of thin air; we have to create it—little by little—as we practice listening to, caring for, and respecting all of our bodies. Please. Let’s create this world for each other.
My hope is that as we seek out these voices and draw them into our minds and communities, their insights will wash over us; change the way we look at, evaluate, and categorize each other; and prompt us to question our methods of determining human worth. I believe there is a kinder, more supportive, creative version of us out there, and listening to these voices is one way to move in that direction.
Insights like: sorting bodies into a hierarchy of those worth saving is an arbitrary and dangerous practice; health insurance should never be dependent on employment; collective collaboration will carry us so much further than individual pursuits. It’s not that disabled people have all the answers to the problems unfolding around us—good lord, who does?—but if ever there was a time to invite us to the (figurative, social-distancing version of a) table, I’d say we’ve arrived.
