Disabled and Chronically Ill: Navigating Work Inside and Outside the Academy
Introduction by series curators Shanna Katz Kattari and Stephanie L. Kerschbaum
Over the past few decades, disability rights and disability justice movements have helped support disabled and chronically ill individuals claim disability as an identity and set of lived experiences, not simply a diagnosis. In turn, more and more people are claiming this identity, connecting in communal spaces of all kinds, and working towards dismantling ableist concepts. However, there are still incredible challenges surrounding disabled identity for faculty members in the academy, despite the benefits of having disabled faculty on campus. For example, many of us have been told to downplay or even not disclose our identities and experiences when feasible in order to get a job or tenure, have experienced high rates of ableist microaggressions (as well as explicit ableism), and have dealt with extreme tokenization while simultaneously fighting for basic accommodations to be made for our bodyminds. These experiences of disability within higher education occur against a backdrop whereby colleges and universities increasingly ask those who work for them to be hyper-productive even as conditions of long-term support decline — the effects of which the contributors to this special issue of Spark all touch upon.
The COVID-19 pandemic and ongoing protests for social justice unfolding across the United States have in many ways exacerbated these challenges. To take just one example, many disabled and chronically ill faculty have long requested options for participating virtually in meetings that were otherwise being held in person, only to be told that those things were impossible. When the pandemic spread and social distancing requirements made virtual events a necessity for everyone, then all kinds of opportunities for remote participation became available, but often without fully considering the range of accessibility practices required to enable participation. This challenge was on full display at the largest faculty senate meeting in University of Michigan (U-M) history in mid-September, when protests that the online voting interfaces and new motions were inaccessible to screen readers were met by the faculty in attendance voting against pausing for discussing or negotiating accommodation possibilities. This recent event illustrates that while access may have expanded for some people in some ways, many others are finding that hard-won accommodations and procedures have to be negotiated anew, often among circumstances as hostile as the U-M faculty senate meeting. Amidst these reconfigured environments, disabled and chronically ill faculty still find themselves working to have their experiences recognized rather than erased or dismissed entirely in considerations of college and university practices and environments.
Too, the effects of the COVID-19 pandemic put intense pressure on the most vulnerable and marginalized groups of faculty, among whom disabled faculty are disproportionately represented. The risks associated with teaching classes in person or of experiencing research disruption are not equally distributed across faculty experience. Many disabled faculty may find themselves unable to refuse to teach in person without risking their jobs, even if teaching in-person means risking their lives. In response, a coalition of disabled and multiply-marginalized faculty created the Accessible Campus Action Alliance (ACAA) with the explicit aim of promoting care-based approaches to college and university plans for faculty work amidst the growing COVID-19 pandemic. In “Beyond High-Risk,” the ACAA calls for colleges and universities to approach Fall 2020 campus re-openings as a matter of “disability, racial, and gender equity,” and they urge “university administrators and communities to value the lives of marginalized racialized and disabled people over the purported economic value of campus re-openings.” The ACAA’s call is among the most recent in a decades-long history of disabled people arguing for the right to be present in U.S. higher education, and it stresses the important links between interlocking forces of oppression, as articulated by Disability Justice activists such as Sins Invalid and the Harriet Tubman Collective.
The various contributors to this series share a range of experiences with disability and academic precarity, highlighting the hyper-productivity demanded of late-capitalist workers (Spiel; Luminais; Mahipaul and Katzman) as well as the demand faculty experience for producing legible performances of self and identity (Simpkins and Swift). These experiences of disability are inflected by the authors’ racial, gender, and sexual identifications, and reflect commitments to understanding disability as linked to experiences of race, gender, sexuality, economic precarity, and more.
Katta Spiel speaks to the experiences of many disabled people in navigating the academic job market, including accidental disclosures by letter writers to the barriers of paternalism and internalized ableism while Misty Luminais explores the experiences of being a researcher who researches some of the very systems that have failed disabled and chronically ill individuals even as she works through her own changing health and ability. In navigating these changes, Luminais recognizes the need to hold grace for herself in the same way that the transgender and nonbinary community did for her. The piece by Neil Simpkins and Brenna Swift offers a trauma-informed approach to both graduate students and early career faculty experiencing mental disability within the academy that values collaboration and works to ensure basic accessibility across all areas. Finally, in a conversation between a disabled person and a non-disabled accomplice, Susan Mahipaul and Erika Katzman discuss how compassion, advocacy, and inter-ability connectedness can create meaningful and supportive relationships within academic settings.
Reading these essays together, we deeply appreciate the reminder that disability can be, and indeed is, a beautiful thing: it reminds us to hold grace for ourselves; to challenge white supremacist and patriarchal notions of neoliberal hyper-productivity; to lean towards collaboration and interdependence in the midst of institutions that pit individuals against one another. The frustrating lessons we learn from navigating ableist and racist systems may wear down our bodyminds, but these essays remind us of the strength we gain through a connection within and across communities, through allowing ourselves to love our bodyminds for what they can do, and through sharing our truths with others.
Shanna Katz Kattari, PhD, MEd, CSE, ACS is an assistant professor at the University of Michigan School of Social Work and in the Department of Women and Gender Studies (by courtesy). Dr. Kattari’s research focuses on understanding how power, privilege, and oppression systematically marginalize, exclude, and discriminate against people regarding their identities/expressions through negative attitudes, policies reinforcing oppression, oppressive actions, and isolation. Her work centers on disability and ableism, and transgender/nonbinary identities and transphobia, using an intersectional lens.
Stephanie L. Kerschbaum, PhD, is an associate professor of English at the University of Delaware and a 2019–2020 NCID scholar-in-residence. Her interests include disability studies, narrative and story-based research, Deaf studies/sign language studies, as well as projects related to faculty mentoring, supporting minority and underrepresented faculty, and issues around academic culture and institutional transformation. Dr. Kerschbaun’s work focuses on understanding how the ways people interact can help higher education institutions address issues of diversity and difference.
