By Josie Ballew
The following is an excerpt from my final paper for Dr. Nadia Guessous’ FG308 Critical Disabilities Studies. My paper was structured as a collection of reminders to myself, using the mosaic of Eli Claire’s Brilliant Imperfection as inspiration and permission to present my final thoughts in multiple sections. Although this piece was initially crafted with my future self as the audience, I am very excited to be sharing my reflections on the course in the Monthly Rag!
“I do not wish my anger and pain and fear about cancer to fossilize into yet another silence, nor to rob me of whatever strength can lie at the core of this experience, openly acknowledged and examined” (Lorde 1).
Audre Lorde’s The Cancer Journals are a vulnerable disclosure of grappling with the psychological and physical pain of breast cancer and mastectomy, of finding wholeness through loss, of the “care webs” she has created, of the affinity she is seeking with other breast cancer survivors, especially Black and lesbian women with whom she has shared experience. Thinking forward to when this class is over and I move on to my next class, and further on to graduation, I am very aware of how my class, whiteness, heterosexuality, location in the global North, and cisgendered and able body-mind provides a right of exit from the conversations of disabilities studies and disability justice work. I worry that my participation in this conversation may “fossilize into yet another silence” when I am no longer daily asked, if not required, to engage.
Many of the other authors we have read this block have commented on the violence of such silence. Disability Justice (DJ) activist and writer Leah Lakshmi Piepzna-Samarasinha writes that when it comes to the topic of disability, “there was a huge echoing silence in POC and/or queer activist communities” (18). She explains how this silence was shared by both disabled and non-disabled folks in QTBIPOC activist spaces she inhabited (18), and is often the result of multigenerational “histories of scarcity and shame” where survival necessitates silence about disability or access needs (129). In some ways this silence is self-preservation. The danger of this silence, however, is that without open negotiation of access needs, not very much can be accomplished. As Stacey Milbern, “friend and comrade” of Piepzna-Samarasinha, says, “access is only the first step in movement building” (129). This kind of silence then is antithetical to affinity, care, and movement building.
Jasbir K. Puar is also interested in critically examining what goes unsaid in academic and activist spaces. Throughout The Right to Maim, Puar points to the failing of a “disability rights frame”, a form of activism and scholarship that centralizes rights, empowerment, and disability as identity (Puar xvii). At the end of her chapter titled “Crip Nationalism”, she writes, “some versions of disabilities studies in the United States thus manifest a complex elision of their own imbrication in the production of debilitation through an absent critique of U.S. imperialism” (Puar 93). By omitting the critique, this form of disability studies work refuses to acknowledge its own role in U.S. imperialism, and is therefore refusing a real commitment to upending ableism, since as Puar also states, “warfare, exploitative laboring conditions, occupations, incarceration count as […] part of an inaccessible ableist social, as much as buildings, curbs, ramps, elevators, service animals, cognitive normativity, and chemical sensitivities” (Puar 74). A refusal to acknowledge any one piece of these interlocking systems of oppression will continue to protect those systems. This silence then speaks volumes.
Silence serves as a protective mechanism, a mechanism which may seem to protect people, but also protects the very systems of oppression that harm them. An oft quoted moment from Audre Lorde’s essay is “The Transformation of Silence into Language and Action” is “my silences had not protected me. Your silence will not protect you” (13). If silence is protecting harmful social, political, and economic systems, then it will not protect us. Silence will not be a uniting force, it will not create platforms for affinity, care, and movement building. I feel it is also important to emphasize that transforming silence into language and action does not rely solely on the spoken, or even the written word, so here is the final reminder: There are endless creative ways to make language and action, collectively. So continue to seek out those conversations. Especially seek out difficult and uncomfortable conversations that require a critical implication of your role in upholding violent systems, and remember the protections those systems are afforded by silence.
Cepeda, María Elena. “Thrice Unseen, Forever on Borrowed Time: Latina Feminist Reflection on Mental Disability and the Neoliberal Academy.” Crip Temporalities special issue of The South Atlantic Quarterly, vol. 120, no. 2, 2021, pp. 301-20. Doi:10.1215/00382876-8916046.
Clare, Eli. Brilliant Imperfection: Grappling with Cure. Durham and London: Duke University Press, 2017.
Lorde, Audre. The Cancer Journals. 1980. Penguin Books, 2020.
Piepsna-Samarasinha, Leah Lakshmi. Care Work: Dreaming Disability Justice. Arsenal Pulp Press, 2018.
Puar, Jasbir K. The Right to Maim: Debility, Capacity, Disability. Duke University Press, 2017.
Schalk, Sami and Jina Kim. “Integrating Race, Transforming Feminist Disability Studies.” Signs: Journal of Women in Culture and Society, vol. 26, no. 1, 2020, pp. 31-55.
 María Elena Cepeda, professor of Latina/o Studies at Williams College, elaborates on the complexities of disclosure, calling it “a type of forced intimacy” (310). She also notes that “disability disclosure is also inextricably tied to other factors, such as gender, rank, and ethnoracial identity, among others” (313).
 A “care web” is a support system modeled after a Disability Justice framework which values continuous, sustainable, mutual care and which relies on affirming each person’s agency to communicate and negotiate what is possible for them. This is a summary in my own words of an idea coming from Leah Lakshmi Piepzna-Samarasinha’s essay “Care Webs” in Care Work: Dreaming Disability Justice.
 Feminist-of-color disabilities scholars Sami Shalk and Jina B. Kim situate “affinity” in their work as follows: “Attunement to the workings of power, that is, how ableist violence operates alongside and through heteropatriarchy, capitalism, and white supremacy, further allows feminists-of-color disability studies to explore unexpected points of affinity that might build coalition across categories” (38). This is what I invoke in my use of the term. Although Lorde did describe a desire for coalition building with women who shared parts of her identity, I do not believe her understanding of affinity is limited to notions of identity and sameness, in fact it is Lorde’s work which likely inspired Shalk and Kim to use “affinity” this way, since they are among current disabilities scholars integrating Lorde’s work into the disabilities studies genealogy.