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."
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.
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.
In time, you come to feel Anzaldua’s words—“Identity, like a river, is always changing, always in transition, always in nepantla. You begin to define yourself in terms of who you are becoming, not who you have been” (p. 556).
You see new connections in the world from your vantage point as a BIPOC person with disabilities that others cannot. The past begins to make more sense, the present feels more real, and the future’s uncertainty becomes less intimidating despite the many obstacles in your path. But far from being an individual psychological journey, the call is an intense exploration of intersectional identities catalyzed by and viewed through the lens of your subjective experience of the human condition of disability.
The state of piecing together Coatlicue is a creative process of meaning-making and storytelling as nepantlera. Anzaldua says, “By now you’ve found remnants of a community—people on a similar quest/path. To transform yourself, you need the help (the written or spoken words) of those who have crossed before you. You want them to describe las puertas, to hold your hand while crossing them. You want them to guide your journey within the Chicana, queer, artistic, feminist, spiritual, and disability communities. You ask, ‘How can I contribute?’” as you shapeshift.
Connecting with the works of Simi Linton, Gloria Anzaldua, Albert Camus, bell hooks, Frantz Fanon, and James Baldwin has been pivotal to the shifting development of my disability identity at the borderlands of difference. We need connection with those who, from their own unique intersectional positionalities, are well-acquainted with the shock of el arrebato, the uncertainty of nepantla, and the unending hard work of piecing together Coatlique. We need guides familiar with the rich historical, literary, and academic traditions of BIPOC, disability, queer, and class cultures worldwide as our multifaceted disability identities emerge and questions arise. This requires not only knowledge and experience, but facilitation of connection to resources and opportunities for community leadership and development.
Borderlands disability culture is self-determination in action—individual and collective action in response to oppression. It is redefinition on one’s own terms, reclamation, reframing, and allyship within and across difference to facilitate the full participation of all in a more humane world.
Identity is resistant to categorization because people don’t experience life, think, or behave singularly as a trans person in this situation, as a disabled person in that one, or Tejana in another. These strands of identity are tightly interwoven and cannot be separated out without violently rending the fabric of our very selves. Accordingly, the guides we seek and the sense we make of their teachings are not only projections of our whole selves but emerging indicators of who and what we are becoming. Likewise, others’ choices to guide us are indicative of their own journeys, values, and strivings. We shape each other as we all shift.
Gestalt psychology teaches of the figure-ground relationship, saying that in an ambiguous scene in which many patterns may be perceptible, a figure will emerge from the ground that gives a clue to your internal mental state. Our various strands of identity work in a similar fashion in our relations with others. Emergent themes of self-definition throughout our lives in turn bring certain elements into stark relief against a backdrop of ambiguity. For example, bell hooks said, “When I left the segregated world of my poor and working-class home environment to attend privileged-class schools, I found that I often had more in common with white students who shared a similar class background than with privileged class black students” due to their shared language, customs, struggles, values, and fears (2000, p. 119). As we learn of and contribute to our newly-discovered cultures over time, we may relate more to people from this strand of identity than that as we make sense of different things.
“It depends on your perception, what you focus on” (Anzaldua, 2000). Our openness to the idea that we may connect deeply with someone from a background seemingly completely different from our own except for the shared experience of disability-based marginalization is the start of a lifelong expansion of our worlds, where we belong in them, and our purpose as a member of overlapping human communities. It is the role of our guides to serve as midwives throughout the process of borderlands disability identity emergence.
Once we have connected with our borderlands disability identity and have started to learn with others about this (as well as its complex syncretic interactions with other strands of our identity and culture), we take greater authorship of our life story, making new meanings, revising old narratives, and reframing the world. We reconstruct Coyolxauhqui again and again in a lifelong process of personal and communal reinvention in light of new realizations, which, in turn, contributes to the larger narrative of borderlands disability culture as a whole.
Thus, it’s crucial for guides to help us record and share our decolonization work, to add to the nascent borderlands disability culture body of knowledge, artistic traditions, and cultural practices. This cultural work makes soul, and in doing so heals the self and others. This should be practiced quite broadly.
My writings have challenged me to root out and shine a spotlight on the self-loathing I’d internalized as a colorless person of color in a white supremacist world, a so-called madwoman in a society pathologizing the non-normative, a poor person in a materialist society, and a teen mother in a nation that fetishizes chastity. I mix theories and methods like a DJ at the table, creating a rhythm and melody paying heavy homage to those before me.
We must share our cultural mixtapes and engage in lyrical analysis of their content. In doing so, we redefine and reclaim our lived experiences at the borderlands of difference to include our whole selves and communities.
Dr. Rosa Sierra is a disabled Chicana psychotherapist living in Canada who has written and taught in the academic and clinical worlds for about 15 years. She comes from a place of generational and childhood trauma and poverty rooted in family and societal dysfunction, and adds that "the writings I've done that are closer to the heart of my lived experiences have been much harder for me to share".
*Rosa wanted to make it known that she is in agreement with the extremely valid critiques of Anzaldua's retooling of Jose Vasconcelos's concept of la raza cosmica as the aim of mestizaje (racial and cultural admixture)? She did NOT take it far enough, nor did she take him to task as much as deserved.
Anzaldua, G.E. (2002). Now let us shift…the path of conocimiento…inner work, public acts. In Anzaldua, G.E. & Keating, A. (Eds.). This bridge we call home: Radical visions for transformation (pp. 540-578). New York: Routledge.
Anzaldúa, G.E. & Keating, A. L. (2000). Interviews = Entrevistas. New York: Routledge.
hooks, b. (2000). Where we stand: Class matters. New York: Routledge.
Kafka, F., & Corngold, S. (1981). The metamorphosis. Toronto: Bantam.
Moraga, C. & Anzaldúa, G.E. (1983). This bridge called my back: Writings by radical women of color. New York: Kitchen Table Press.