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The Journal of Multimodal Rhetorics

ISSN: 2472-7318

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On 'Crip Doulas,' Invisible Labor, and Surviving Academia while Disabled

Adam Hubrig, Sam Houston State University

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“Crip mentorship/coaching/modeling at its best is ‘disability doulaship.’ [. . .] I am thankful for every person who has trusted me with the honor of supporting them through their journey and those who have supported me through the same. My survival and resilience has depended on it.”

—Stacey Milbern (qtd. in Piepzna-Samarasinha)

 

I’ve recently moved to Texas, and I’m on my way to the emergency room because my remaining bits of intestine have quit working, again. In a small group chat with 4 other disabled scholars, I express my own fears about working with a new doctor, share my frustration with pain management, and ask how I might handle this situation with my new department chair and a new institution.

My disabled friends are incredibly supportive, understanding chronic illness and the need for what seems like a never-ending cycle of surgery and recovery and surgery and recovery. They also offer material support, asking if they can send me care packages or cash to help with medical costs.

In this particular chat group and in many similar interactions with disabled friends and colleagues, we do our best to make due: we support each other and are supported. We hold space to listen when one of us needs to vent. We offer advice on how to navigate the ableist spaces of academia as disabled people. We give our emotional and material support to one another in whatever ways we can. While I enjoy doing this work, it is work. I write about this work inspired by Leah Lakshmi Piepzna-Samarsinha, who theorizes care work, the work that disabled and sick people do to support each other, work done disproportionately by queer disabled femmes of color. The survival of many disabled people trying to survive academiaand my own survivaldepends on this labor continuing against a backdrop of institutional ableist structures. The most meaningful work I’ve done in academia has been to do this labor for others. We give advice on how to navigate ableist systems as disabled people. We affirm each other’s disabled identities.

In conversation with Leah Lakshmi Piepzna-Samarsinha, Stacey Milbern describes the role of the “crip doula.” Milbern describes how this work disproportionately falls do disabled people of color, and goes on to describe the process by which disabled people welcome other disabled people into disability. Milbern says “the transition itself, of becoming disabled or moving along the ability spectrum, is frequently invisibilized, to the point that these changes do not even have a name” (qtd in Piepzna-Samarasinha, 2018, p. 240). Often, in conversations with other disabled students and faculty, this workthis labor of affirming disabled identity, of reminding each other that we are more than the sum of our damn CV lines anddespite what our institutions may be telling us at timeswhat our bodyminds are going through are real and legitimate.

Because academia is a capitalistic, neoliberal enterprise, bent on extracting as much labor as it can from us with minimal investment in us. As Carmen Kynard arguesalong with a reminder to not confuse the job and the work“neoliberalism does not love anyone, not even its white citizenry” (2020, p. 19). Disabled people are frequently reduced to cost analysis of our access needs (Hubrig and Osorio, 2020, p. 88), and Academia deftly gaslights us about these exploitative practices, and would like us to believe that it’s on us when we can’t meet whichever ableist demand being made. This is only compounded for multiply-marginalized disabled people whose bodies “have been rendered immobile under the weight of discourse and inaccessible spaces” (Jackson) by the white supremacist, heteropatriarchal institutional bullshit our institutions were built on.

This gaslighting is harmful: I’ve noticed a pattern in conversations, recently. It goes something like this: a colleague confides in meI’m a person who is very publicly disabledthat they experience a certain disability. I’m going to be vague here to protect people’s confidentiality, but maybe they are struggling with depression or anxiety, or have POTS, or are dyslexic, or a million other disabled embodied experiences. They then add, but I’m not disabled. Because disabled people are pressured to do so much to conceal our disabilitieseven, sometimes, from ourselvesit can be hard to claim disabled identity. I find, in these conversations, that reaffirming disability and welcoming others into disabled identity is often important work. These conversations are often difficult. But sometimes people are looking for a person they recognize as disabled to tell them their disabled embodied experiences matter, that they count. Affirming disabled experiences, affirming disabled identity is care work.

And it’s that care work that builds disability communities: as Piepzna-Samarsinha said in conversation with Milbern about crip doulaing, “naming disability as a space we can be born into, not alone but supported and welcomed by other disabled people [. . .] that changes not only the entire way both individuals can experiences disability but the ways disability communities can be formed” (241). While so much discourse on disability in higher education is about how we accommodate disability, I’m more excited and energized about the conversations about creating disability community, about affirming disabled identity. I’m excited about this labor of crip doulaing as a celebration of disabled community.

I try to be attentive to the gendered, racial dynamics of this labor. Piepzna-Samarasinha draws frequent attention throughout Care Work: Dreaming Disability Justice to the ways in which care work is frequently expected from femmes, and particularly queer disabled femmes of color (see especially their essay “A Modest Proposal for a Fair Trade Emotional Economy”). As a white, nonbinary, masculine-coded, queer, disabled person, it’s important to maintain awareness of the amount of care work I’m asking for, and my own willingness to do care work for others. Attending to these dynamics is central to interrogating howeven within disability spaceswhite supremacist, heteropatriarchal crap still gets centered.

In some ways, this is a love letter to those who do this labor--not just in my circle, not just in academia, but everywhere. It’s also a love letter for those I have the honor of doing this labor for and who do this labor for me.  I am grateful for disability community where and when we can create it, even if some of these coalitions and communities are short lived or if we check in once a semester or once a year or even less frequently. Of course, this community is imperfect and has its own problems just like any other, but I couldn’t survive without it. The care work of affirming each other’s disabled embodied experiences amid the ableist, racist, capitalist, and hetero-patriarchal systems is vital, and being in community with you is often the most joyful part of this work. I love you.

But it’s also an indictment: Care work for disabled people is some of the most meaningful work I do as a scholar. It’s some of the most meaningful labor I do as a human. Yet, in the bureaucratic calculus of annual reviews and other ways in which labor is quantified, understood by my institution, and rewarded, this work is rendered invisible. These systems are designed to push marginalized people out, as Christina Cedillo (2018) notes, “Within academic spaces, institutionalized communication permits some to enter privileged spaces at the expense of those who are pushed out.” Confronting ableism means recognizing the devalued labor that makes disabled folks’ survival possible.

 

References

Cedillo, C. V. (2018). What does it mean to move? Race, disability, and critical embodiment pedagogy. Composition Forum, 39. https://www.compositionforum.com/issue/39/to-move.php

Hubrig, A., & Osorio, R. (Eds). (2020). Symposium: Enacting a culture of access in our conference spaces. College Composition and Communication, 72(1), 87-117.

Jackson, C. A. (2019, July 14). How does it mean to move? Accessibility and/as disability justice. Medium.

Kynard, C. (2020). “All I need is one mic”: A Black feminist community meditation on the work, the job, and the hustle (& why so many of yall confuse this stuff). Community Literacy Journal, 14(2), 5-24.

Piepzna-Samarasinha, L. L. (2018). Care work: Dreaming disability justice. Arsenal Pulp Press.