Once upon a time… and then and then… they lived happily ever after. Narrative frames provide both fitting familiarity and, at times, some unfitting discomfort. Disability narratives, Disability Studies, disability justice, and disability experience have long been disrupting —and "cripping"—time. The pieces collected in this issue of DSQ demonstrate some of the locations, capacities, and movements of disability studies, in time.
In 2018, Jay Dolmage published a timely entry on "Disability Rhetoric" in the Cambridge Companion to Literature and Disability (Barker & Murray, Eds.). Dolmage's essay drew from the field of classical rhetoric (and philosophy) and focused on the three primary times of Disability Studies scholarship:
- ❖ Epideictic: discourse and study of the present, of celebration and blame, of ceremony, of current events. (Note: epideictic, by nature of being "in the present" is almost always then also grounding some in the past while it likely also references itself forward, to the future. Time is like that.)
- ❖ Forensic: discourse and deliberation, study and scrutiny, that aims to excavate, recover, re-examine, and even re-invigorate the past.
- ❖ Deliberative: discourse that leans toward the future as it imagines, presents, re/considers and often also charges forward with an activist/change orientation.
Of course, no time exists in its own frozen moment. Most rhetorical discourses—and certainly most Disability Studies research —often engages, and travels through, multiple times at once, even if they might ground in one primary time zone. So too, our DSQ Time is spent "not alone" but in collaboration and community.
Our time at DSQ this Winter/Spring 2021 was also enhanced by continued, collaborative work with the graces of undergraduate interns from UConn's "Writing Internship" program. Here Jess Gallagher, DSQ intern for Winter/Spring 2021, locates some of her own experience with the journal:
Interning on DSQ Time
DSQ Time moves both slowly and quickly, and it allows us to travel beyond the period we inhabit—blurring the boundaries between our own experiences and the stories of others. DSQ Time has forever changed the way I view the world. In my time at DSQ, I've had the privilege and joy of working with the DSQ editorial team and watching my own understanding of Disability Studies grow with the publication process of this 41.2 issue. I don't think I can well express how grateful I am for the DSQ community, and the opportunity I've been given to engage in a field that is so diverse and welcoming.
As an English Literature major at UConn, I found myself wondering why my years at the university passed so quickly. I merely went through the motions of academia as an undergraduate— read, write, and move on to the next requirement. I failed then to see the bodies and minds behind the texts I encountered. In contrast, working with DSQ showed me that I should challenge my own understanding of ableism and be critical of the environmental contexts surrounding higher education by examining the rhetoric and language used around people (students, faculty, staff) with disabilities. I began to ask myself, alternatively, "How does higher education and society continue to place those with disabilities in positions that make basic access increasingly more difficult?"
As Jay Dolmage asserts in Disability Rhetoric, "Disability rhetoric should also be seen as an alternative ontology" (106). I believe that Disability Studies gives us a way to continually, and alternatively, (re)theorize how minds and bodies make meaning in the world by analyzing how constructed differences are classified by, and within, systems of power. When I reflect on what I've learned by engaging with a wide variety of submissions at DSQ, new books within the field, and the DSQ community, I can't help but think about where DSQ is going and where we've been.
Working as an intern at DSQ during Winter/Spring 2021, my main responsibilities were:
- gathering books to be reviewed for the forthcoming DSQ-R issues;
- finding peer reviewers for new submissions;
- copyediting article submissions for this 41.2 issue; and
- developing an author style guide for DSQ.
While gathering new books for the next set of reviews, I was initially shocked by how much scholarship was being produced within the field! After traveling from press to press, the small list of just 3 books grew and grew from 35 to 46, and then 72! Much like the field of Disability Studies itself, I know this number will continue to grow, just like the number of article and creative submissions we have received in the last six months. Reading each new submission and helping to find 5-7 reviewers from both inside and outside of the DSQ community was truly an honor!
As I began to work on the DSQ Author Style Guide that Fall 2020 interns, Ashley Roy and Greta Schmitz, had set in motion, the editorial team at DSQ and I decided that DSQ and its authors should have a guide that doesn't solely reference different citation formats and writing mechanics. Instead, we believed we should design a guide matched to our field —one that also references style and language within the field, disability rights frameworks, and research and writing ethics for the field.
I can confidently say that I've learned greatly from these internship responsibilities. As I look towards the future, I see, well, a future with DSQ! From launching a possible DSQ Blog that will showcase an abundance of new voices, to continuing work on the DSQ Author Style Guide, I couldn't possibly imagine leaving when there are so many exciting opportunities ahead! I look forward then to working with DSQ, once again, as a Fall 2021 intern.
—Jessica Gallagher
Timing and mapping the contents of this issue
In the opening piece, "Blogging to Counter Epistemic Injustice," Cavar and Baril offer a netnographic analysis of blog posts written by trans and disabled authors between the years of 2013 and 2019. They deploy a theoretical framework grounded in trans and disability/crip/Mad theory to illuminate the blogging sphere as a present-day (and future) site of "micro-activism," in which opportunities for self-diagnosis, community formation, testimony, and advocacy abound. TD bloggers facilitate opportunities for epistemic justice by reclaiming experiential knowledge and decentering psychiatric authority.
In their present-focused study of uneven healthcare access in São Paulo, Brazil, Serrano and Martin write about the compounding precarity of immigration status and disability. "Immigration, Disability, and Healthcare Access in Brazil" offers a qualitative method that synthesizes domestic and international studies of physical, linguistic, architectural, cultural, and attitudinal barriers to healthcare access. This discursive and political context pairs strongly with ethnographic accounts of Bolivian immigrant women with disabilities and their caregivers as they navigate neglectful healthcare systems.
Chandler, Dion, and Rice think with the activist art of Vanessa Dion Fletcher to decolonize concepts of indigeneity and disability in their present-to-future time collaborative essay, "Decolonizing Disability Through Activist Art." Their triangulated project demands an ontological reckoning with the presumed knowability of "disability" and "indigeneity" as stable concepts, given the myriad cosmologies, languages, and cultural practices across Turtle Island, varied understandings of complex embodiment over time, and the ongoing violence of centuries of colonization and genocide. Leaning toward deliberative/future time, they argue that activist art and its capacity for reanimating Indigenous pasts and critiquing contemporary processes of debilitation might offer new modes of relationality that promise decolonized futures.
Also grounded in a present-day situation and analysis while aiming an argument toward the future, Krause and Ueno find that young adults with learning, intellectual, or multiple disabilities attained fewer adulthood markers, like employment, marriage, and independent living, when compared to young adults with physical disabilities. Using Poisson regression to assess data collected by the National Longitudinal Study of Adolescent to Adult Health, they argue that policies and programs addressing these disparities are too individualistic and that structural redesigns of residential communities, employment, and education would be more effective.
In a reflective essay centered on the past (but bearing much on the present state of Disability Studies research), Chelsea Temple Jones considers moments of tension in IRB work. She thoughtfully considers her qualitative research methodology for a project working with intellectually disabled writers, and she elaborates on the ways her research design reflected a position of Nothing About Us Without Us (NAUWU), which was at times in opposition to the IRB's conception of competence.
In "Accommodating Disability at University," Bruce and Aylward examine student/faculty relationships as sites for understanding how barriers to access and marginalized identities get reinforced within complex systems and institutions. They conducted interviews with students and faculty at three Canadian universities to reflect on their past and present access labor and ultimately concluded that strong faculty/student alliances are understudied and are a rich location for transforming Canadian universities into more accessible, equitable institutions.
Also set in the context of the contemporary university, Farrimond and Toller relay between the past, present, and future in dialogue with chronically ill students as they navigate university accommodations during their study at UK universities. Their findings reveal that chronically ill students were more willing to disclose their disabilities than previous studies have indicated. Leaning forward to the future, the authors suggest that an individualized and student-informed accommodation process would have benefitted students and that a greater understanding of chronic illness in society at large and within universities is needed.
Assaf, James and Danforth use discourse analysis to excavate "the politics of the hero's journey" in American special education textbooks. They introduce the profession as a hero's journey with a predictable narrative arc that has the power to be what one uses to read a teaching career. The authors' argue that the hero's journey framework dehumanizes disabled people and ultimately positions them as problems to be solved.
Set in a present urban context, Raquel Velho's "'They're changing the network just by being there': Reconsidering infrastructures through the frame of disability studies," uses a case study to examine wheelchair user accessibility in public transportation in London. Velho relies on disability theory to trouble foundational concepts in Science and Technology Studies, particularly that infrastructures are invisible and exert subtle power. Velho demonstrates that wheelchair users actively develop inclusion mechanisms to change infrastructures, which means the infrastructure is actively perceived and navigated and that "invisibility" is a category of privilege.
Sumskiene, Gevorgianiene, and Geniene "bridge yesterday and tomorrow" by examining the impact of disability theory and activism on policy and the implementation of the UNCRPD in European post-socialist countries. The authors triangulate findings from four disability researchers, interviews with five experts from disability organizations, and a review of articles on disability-related topics to illuminate the barriers to implementing a sustained, human rights framework that benefits disabled people in their daily lives.
Philippa Campsie's archival research offers a revised understanding of Charles Barbier, Louis Braille, and raised-point writing. This article uses original documents and correspondences to correct the few existing histories on the emergence of methods and tools of point writing for blind people. Ultimately, Campsie reaches into the past and recontextualizes Louis Braille's contributions for the present day.
In forensic time, McNamara historicizes the role of the police in spatially segregating persons regarded as "dangerous" or "mad" both during and after the age of "institutionalization" in Ireland. In "Policing in the Age of the Asylum: Early Legislative Interventions in the Lives of Persons with Disabilities," McNamara traces police involvement in contemporary mental health systems back to the expansion of the State in eighteenth and nineteenth century Ireland, along with subsequent attempts to cure social disorder and poverty with a growing asylum network. Mcnamara points to Ireland's recent ratification of the UNCRPD as a promising step towards shrinking the police surveillance of psychiatric disability while incorporating awareness-raising programs that might challenge cultural and structural barriers.
In another significant forensic excavation, Hrynyk offers a textual analysis of The Body Politic (1971 – 1987), Canada's longest running gay and lesbian newspaper, to examine representations of disability and disease immediately before and during the HIV/AIDS epidemic. In"'No Sorrow, No Pity.' Intersections of Disability, HIV/Aids, and Gay Male Masculinity in the 1980s," he explores how the aesthetics and language of physical disability was constructed as antithetical to virile, gay masculinity. Disavowals of disability in gay male communities would shape later conversations about the undesirability of the HIV/AIDS body, discursively linking disease and disability as threats to a "healthy" gay sexuality.
Anastassiya Andrianova analyzes disabled characters in Mikhail Lermontov's "Taman'," talking back to existing critical readings that position the three disabled characters as simply textual devices. This reading represents the experiences of these disabled characters as worthy of understanding on their own terms, not as simply metaphors or plot supports for the hero-narrator. This analysis also confirms the limited historical knowledge about disability (invalidnost') in nineteenth-century Russia, and it challenges notions of Romantic heroism and the Gothic.
This issue concludes with two powerful collections of poems. Jersey Cosantino's autoethnographic poetry collection, "Hauntings of Longing," reaches back through the author's personal past alongside histories of oppressive systems and ideologies in order to grapple with present and future of Mad and trans identities. Francis Goodman's "Five Poems" about Huntington's disease witness what Alice Riviéres in The Dingdingdong Manifesto calls a "very grave and unforgivable failure of medicine." Genetic "truth" not only stigmatizes those with this condition but it also maims time itself.
