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born with Down syndrome. Her parents call her their “little angel.” The best-selling book, written after Robin’s death at an early age, lays out a powerful account of Robin’s divine mission—framing her life on earth as part of God’s plan to transform human hearts.
this notion has been used to script a certain kind of “sweetness” onto disabled bodies, the way that it demands a certain kind of embodiment that couples spiritual wisdom with worldly naivete.
If you want people to make a genuine spiritual choice to praise, she argues, you also have to equip them with the option for blasphemy.8
All too often, the idea that disabled people have a special affinity for the spiritual gets used to deny the complexity of our stories, to overwrite our very humanity, to cover over our feelings of anger, frustration, or malice.
Nondisabled folks often don’t account for disability and fail to notice disabled people in their midst. But when the presence of disability becomes undeniable? It often provokes anxiety or dread.
Disability stigma often exaggerates the impact of a disability, heightening other people’s perceptions of the way disability affects a person’s life. But this tendency goes hand in hand with another: the tendency to not see disability, to deny its presence and significance.
denials of disability represent a desire “to rescue people with disabilities from a discredited identity.”
“To be disabled is to be incapable, but I don’t see you that way.”
The failure to perceive disability also stems from a strong cultural presumption that everyone’s bodies and minds operate within a narrow range of what we consider “normal.”
It’s a lot to carry: the weight of other people’s projections, their dread, this resurgence of suppressed knowledge.
The uncanny, Freud maintains, is unsettling not so much because it is strange—but because it confounds expectation, troubling the distinction between the familiar and the unfamiliar. It brings us into encounter with something we think we know but then discover is slightly off.
How thin the space between the sublime and the stigmatized.
To affirm disability in and through the body of the angel is to recognize disability as a meaningful difference in the world, to recognize it and to celebrate it. To honor the brilliant peculiarity of bodies that cannot be assimilated, that refuse the cover of the conventional.
the making of art that illuminates the power and promise of disability politics and culture.
disability is an essential part of what it means to be human. Rosemarie Garland-Thomson calls disability “the etchings left on flesh, as it encounters world,”
Disability is a ubiquitous part of human experience, an ordinary part of our existence. The particulars differ for all of us. But the fact that disability will enter our lives? That it will change us and our loved ones? It is a universal truth, a truth that is as inevitable as our mortality.
Some disabilities are commonplace; others are very rare.
Disability is a wild, uncanny presence that rips through norms and shatters expectations.
Disability is a creative force, a provocation.
Disability often gets positioned as the antithesis of beauty. Beauty, we are told, lies in symmetry and harmony of form. It is bound up with grace and elegance; a matter of lightness, the capacity to fly. Even when we can’t quite pin it down, it seems we know what it is not: clunky, awkward, disabled.
Conventional notions of beauty feel impossibly intertwined with the norms of whiteness, with the policing of gender, sexuality, decorum, and class.
There’s a cultural story we tell—that aesthetic judgments are arbitrary, that beauty lies in the eye of the beholder. But within a given culture, at a particular moment in time, our notions of beauty are remarkably consistent. People judge the same types of bodies as beautiful, and they agree on which bodies fall short.
Economists Daniel Hamermesh and Jeff Biddle have studied the impact of beauty on the labor market. They determined that people judged “plain” pay a significant penalty in terms of employment and advancement in the workforce.
Beauty and ugliness aren’t simply deployed as physical opposites. We also use them to map out strikingly different moral terrain. We attribute goodness and kindness to beautiful faces, a move psychologists call the “halo effect.”
judgments about beauty and ugliness serve as key markers of cultural value, assessments by which we frequently measure social worth.
process of social disqualification, a process that “removes individuals from the ranks of quality human beings, putting them
at risk of unequal treatment, bodily har...
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“Aesthetics,” Siebers explains, “studies the way that some bodies make other bodies feel.”6 Beauty is a magnet, a lure, and a draw. Revulsion has a different power. When a body generates discomfort? When its presence makes us recoil or flinch? Those are the bodies most likely to be rejected from the human community, to be judged not worth our time, our love, our care.
Implicit in all this is the notion that disability is obviously, inherently unbeautiful.
associate disability with a particular kind of beauty: intricate, complex, and visually satisfying.
body forms that evoke disability are actually central to the aesthetics of modern art.
Disability pulses with vitality and dynamism, while pristine perfection ends up looking more like kitsch.
I want a world that knows how to look with pleasure at disabled folks, that knows how to appreciate us without trading in spectacle, without trafficking in freakery. I want a world that knows how to look without colonizing and commodifying. I want a world that knows how to savor the sight of us, a world that relishes us.
beauty makes a poor measure of value.
“We all run from the ugly,” Mingus writes. “And the farther we run from it, the more we stigmatize it and the more power we give beauty.”8
“There is magnificence in our ugliness,” she tells us. “There is power in it, far greater than beauty can ever wield.”9
“What would it mean,” Mingus asks, “to acknowledge our ugliness for all it has given us, how it has shaped our brilliance and taught us about how we never want to make anyone else feel?”
But the path of reclaiming beauty is fraught with its own risks. It rests on retraining the heart and the mind. It requires us to feel a certain way, to look and then to love. What happens when we can’t or don’t? Have we betrayed ourselves?
“What would happen,” Mia Mingus asks, “if we stopped apologizing for our ugly, stopped being ashamed of it? What if we let go of being beautiful, stopped chasing ‘pretty,’
stopped sucking in and shrinking and spending enormous amounts of money and time on things that don’t make us magnificent?”
So many of us who live with disability have known this kind of forced separation from the rhythms of ordinary life: the sudden rupture of accident or the revelation of diagnosis, the hospital stay, the bed rest, the long weeks of rehab, the institutionalization. If we come home, none of us comes home unchanged.
Ableism is a complex system, one that works in myriad ways to deny disabled people access, agency, resources, and self-determination. Ableism
manifests in the social attitudes that stigmatize disability, the architectural barriers that impede access, the complex set of power relations and structural arrangements that privilege certain bodies or minds as normal while marking others as deviant, dangerous, and despised. One of the ways ableism operates? It fashions speed and stamina as a threshold condition for basic belonging. Ableist values intertwine with capitalist pressures to laud those who work at a punishing pace. One of the lies ableism tells us? You only matter if you can keep up.
“We don’t believe human worth is dependent on what and how much a person can produce. We value our people as they
are, for who they are, and we understand that people have inherent worth outside of capitalist notions of productivity.”
To be b’tselem Elohim isn’t dependent on speech or smarts or your ability to work the system.
Disability justice calls us to recognize the connections: the way ableism links up with white supremacy, with misogyny, gender violence, and trans hatred, with antisemitism and xenophobia.
Ableism is part of what drives the brutal, brittle culture of efficiency that makes us to head to work even if we’re sick, that imagines the body as an obstacle to someone else’s bottom line. Ableism is the fear that gnaws us in the night: that we’re only as good as our last accomplishment, that if we’re feeling bad, we better fake it—that we only matter if we’re healthy, wealthy, and well.
Ableism puts tremendous pressure on disabled folks to absorb the cost of our own accommodations, whether the cost be financial, emotional, or paid in pain.
Who gets to rest? Who gets to live with ease? The transformation we need isn’t simply a transformation of the heart, a matter of spiritual awakening. There’s a risk here, a risk that we privatize these questions, a risk that we fail to challenge the social structures and public policies that make rest a luxury that only a few can afford.
