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Borderlands Disability Culture & Identity: A Manifesto

by Dr. Rosa Sierra

"Borderland Disability Culture is redefinition on one’s own terms"

"We are the queer groups, the people that don’t belong anywhere, not in the dominant world nor completely within our own respective cultures. Combined we cover so many oppressions. But the overwhelming oppression is the collective fact that we do not fit, and because we do not fit we are a threat. Not all of us have the same oppressions. We do not have the same ideology, nor do we derive similar solutions. Some of us are leftists, some of us practitioners of magic. Some of us are both. But these different affinities are not opposed to each other. In El Mundo Zurdo I with my own affinities and my people with theirs can live together and transform the planet."

(Anzaldua, 1981)*

Borderlands disability culture is about bearing witness to the intersectional, complex lived experiences of BIPOC disability.

It is our history, language, beliefs, creations, and expressions borne of lives as marginalized border crossers projected through the lens of disability. Borderlands disability culture is self-determination in action—individual and collective action in response to marginalization. It is redefinition on one’s own terms, love, reclamation, reformation, and alliance within and across difference to facilitate the full participation of all in a more humane world.

“As Gregor Samsa awoke one morning from uneasy dreams, he found himself transformed in his bed into a horrible vermin…” (Kafka, 1915)

So starts Kafka’s “Metamorphosis,” so starts much of what I’ve termed “vit lit,” the personal accounts of people with vitiligo. The discovery of your first white spot, especially among people of color like myself, is often described in vit lit as alarming, frightening, anxiety-provoking, dizzying. Philosophers call this the onset of an existential crisis. Jean-Paul Sartre described it as nausea, but I’ve always related more fully to Gloria Anzaldua’s “el arrebato”—a rupture, shock, loss of ground. Like many people of color with vitiligo, I was forced to confront the meaning of turning white in terms of my racial identity.

(Photo: Subvertivo Lab on Unsplash)

As you get your bearings, you soon find out that that little void in pigmentation is actually quite full, holding within it an unknowable future of life in a body displaying anything from a mottled pattern of reverse freckling to complete depigmentation. Vit lit storytellers describe waking up to find that their alarming new whiteness has spread across their face like a splash of milk on an ebony table, their hands as white as if they’d dipped them in paint, or their hair now growing in shocks of platinum.

Deep sadness, anxiety, self-loathing, and anger are felt as aftershocks to el arrebato. The shock can throw one right into the closet, where you hide the truth of your identity as much as possible from those who’d stigmatize you. You are inundated with the dismembering messages of the Western medical discourse of disability—you’re a suffering victim, broken, sick, in need of a cure. You desperately try treatment after treatment and place your faith in the hands of physicians who objectify you as an interesting case study to be experimented upon.

In time, you find that only a few things are certain: There is no cure nor any effective treatment, spontaneous repigmentation almost never happens, and other people will (and do) stare. They ask prying questions—

“Are you a burn victim?”

“Do you…have leprosy?”

“Can I touch it?”

“Are you white…down there?”

As your body involuntarily transitions, you find yourself thrown into the state of nepantla—liminality, “ni aqui ni alla.” The intrusive speckles and splashes of unreal whiteness disrupt your self-image. “On the edge of awareness,” Anzaldua says, “you seek comfort by blanking out reality and retreating into fantasies. You succumb to your addiction of choice…” (2002, p. 552). You may return to the closet, where you encounter other scared souls full of shame and self-hatred. The world is not what you thought, and neither are you. Life as a new nepantlera is a time of pain, of reflection, of realization, of struggle.

A photo of a woman with vitiligo holding a booklet.