By Kazi Ashraf Uddin, University of New South Wales
This piece accounts for the first 18 months of my doctoral studies as an academic with degenerative disc disease causing mobility diseases. My need for reasonable adjustments at desk work led me to ponder upon my lived experiences as a disabled Southern researcher at a Northern university. I explored how the normative linear ableist understanding impacts a researcher with chronic illness. Looking through the lens of crip temporalities and “ethics of pace”, I propose an alternative temporal understanding in the academia for researchers with different dis/abilities.
When I applied for and when I started my doctoral studies at the University of New South Wales – both moments were clouded, slowed down with Covid. I had to wait for one full year to know the outcome of my admission and scholarship. It was a moment of uncertainty which jeopardized my other college application plans. Then once the happy moment of my admission and scholarship offer letter came, I could not start my term right away due to Covid-induced travel restrictions and on a micro level, Covid-induced domestic protocols of social-distancing, quarantine and compulsory home-stay. While physical mobility was confined through these restrictions – both domestic and international – as a result of the international travel-bans, I had to push back (defer) my admission for two terms (i.e., 8 months), so another limbo in waiting to start a PhD that partly deals with transgender disability.
Recent scholarship has put emphasis on crip temporality – a confined and restricted living condition under “late capitalism, global technocracy a, and medicolegal regimes” (Samuels & Freeman, 2021, 245). Alison Kafer (2021) considers the term crip more than just indicating to mobility impairment or physical disabilities, rather she encourages us to think about its causes and consequences within the temporal dimension of existence – aftermath, afterlife, remission, prognosis, chronic, recurrent, “living with” and “dying from” disability. Kafer’s critical provocation of disability caused by trauma, trauma caused by disability, trauma by trauma or disability by disability (in Samuels & Freeman, 2021, 424) leads us to think about the nature and dimension of crip time, a notion that this article attempts to provoke through an academic analogy. Therefore, such a notion has a connection to the linearity of a crip moment – its past, present and future, its before and after. What happens to a body when it falls into a certain impairment and how does/did the body react to its surroundings during, before and after such physical confinement? These queries help us substantiate our critical understanding of what South Atlantic Quarterly famously terms their April 2021 issue as “crip temporalities”. In their introduction to this issue, Samuels and Freeman (2021) urged us to think of illness and disability in linear temporal terms (245). Now the question is – how does a doctoral student live with mobility impairment and how do they perceive the temporality (and spatiality) of having disability?
I was diagnosed with degenerative disc disease (DDD) for L4 and L5 of my spine at the age of 19 after getting hurt while moving a boxy television from the living room to bedroom. With the Magnetic resonance imaging (MRI) report at hand, my physical declared, “you life will be different from now on and you have to go through periodic rehabilitation programs”. Now when I ponder on my doctor’s phrases – “from now on” and “periodic rehabilitation” –, I cannot resist myself from thinking what I have lost and how I have been alienated with chronic neuro-orthopedic complications. Apart of periodic inertia of your back, having DDD means no weightlifting, not long-term sitting/standing, no fatiguing the back with any stressful labour. However, living in a lower middle-class family household without much domestic helping support and with chronic disease is not easy. It makes you a bad patient to your doctor as you cannot always pay heed to their advice and report with periodic spells of bed-ridden non-mobility resulting from injustice to the pelvic joints, i.e., carrying heavy groceries, lifting bags upstairs and even babysitting a 3yo nephew. You even think twice before taking the newborn into your lap lest you feel the tear-jerking pain for any wrong maneuver of your body. The trauma of past (medical term sacroiliac joint pain) and future occurrence of sacroiliitis confines my present movements.
My first year of PhD is marked by an imposter syndrome emanating from the rehabilitative chronic lower back pain that does not let me sit at the desk for more than 30 mins and if I keep sitting for longer period at my desk, during the rest of day I face headache and nausea. Added to this was the “Confirmation of Candidature” that demands several deadlines to be met ultimately (if not illogically) creating a need for speed. Disability scholar Moya Bailey argues that imposter syndrome is often supported by internalized ableism that leads us to overwork causing physical consequences (2017). And in my case, I pressed on working hard despite my kind supervisors’ repeated emphasis on self-care. Here the researcher finds themselves in a limbo in between their supervisors as the individual caring entity versus the institute as the demanding one. There are some flexibilities, but it comes with a price, e.g., extensive bureaucratic procedures for extension, financial restrains etc., formalities which sometimes make you even slower. Hence, I prefer to call this a systemic burden that a research with disabilities has to negotiate with.
Coming from a global South university doing PhD at a global North university like University of New South Wales enhanced my imposter syndrome urging me to prove myself at every moment resulting in the obvious strenuous overwork. The fear of being tagged as a slow-performer or less productive always has been haunting me since I began my academic career. I don’t want to add up to the Orientalist stereotypes of laziness, low intelligence and so on. Am I afraid of being identified with disability as an Asian research student in Australia? Do my racial identity (Asian), visa status (temporary student visa), healthcare status (without state-sponsored health insurance), and financial status (on scholarship for limited period) constitute my fear of getting slow or being identified as less productive?
Once the international travel ban was lifted, I could travel to Australia for my doctoral research after attending the first term online, having regular online meetings with supervisors. However, my chronic neuro-orthopedic conditions required me to make a “reasonable adjustment” of my office desk. UNSW has an Equitable Learning System (ELS) that helps students with special needs offering them either extension of time for assignment submission or physical adjustment such as ergonomic desk arrangement. For me it was the last one. For someone overwhelmed by the effect of a global pandemic and chronic illness and with a behavioral imposter syndrome, waiting eagerly for the ergonomic desk arrangement in a foreign country to start his doctoral research right away is like negotiating between two mindsets – working fast (need for speed) and imposed slowness by the structure. By structurally imposed slowness, I mean the bureaucratic procedures to undergo to avail an ergonomic “reasonable adjustment” (as UNSW terms it). In this century, several universities across the world have arranged such “reasonable” accommodations for students with disabilities and chronic illness (in Rodgers et al. 2022)
Such procedures include approvals and recommendations from relevant schools, faculty, ELS, physician and post-graduate coordinator, needless to mention the actual time required for purchasing and setting up the logistics. Yes, I struggled for four months and a half before I could sit properly/ergonomically at my office desk. Of course, as an international research student, my health insurance does not cover any rehabilitation or physiotherapy expenses. So, easing the chronic pain through physiotherapy was not an option, rather living with it was the only way to survive.
This article is not meant to shower grievances and complaints, but to point at the importance of inclusivity and care that universities like UNSW attend to while dealing with the students/staff with chronic illness/disability. Medical understating of disablement is expected from institutions, yet it is not enough to fully comprehend how a concern for time is integral to disability, how a student stresses out thinking time is running out. For example, leaving everything to ELS from assessing the adaptive need to managing the adjustments for the researcher might be inadequate. An empathetic intervention of the post-graduate studies leadership is necessary to bring the consideration on time, i.e., deadline etc. ELS can often be a third-party private service provider which caters neo-liberal education’s outsourcing agenda. While service from ELS supported me quite a bit, I don’t expect them to understand my situation completely as they are a “different department”. To resume my story, despite struggling with the bureaucratic procedures for the ergonomic sitting arrangement for about five months, my annual progress review was due in July 2022, in two months after my office desk problem was arranged. Several factors work as problematic in this situation – my imposed slowness due to the formalities, imposter urge/need for speed for productivity, the upcoming "Confirmation” deadline and living with chronic illness. Coping up with the neoliberal academic demand to meet the deadline in order to be recognized as a “regular” student poses a challenge to the academic with chronic physical issues. The concept of time is crucially embedded to such crip moments – slowness in production or comprehension, chronic illness, deadlines, all require an understanding of lived experiences through an alternative temporal framework, not the chrononormative and ableist notion of time. Due to the linear understanding of time, neoliberal universities fix time in terms of minutes, hours, weeks and months. For me (both abled and disabled researchers), a researcher with chronic illness, it was thirty-five hours of weekly office time and at the end of nine months – the confirmation of candidature through a rigorous review panel. No matter how many months I have to wait for the reasonable adjustment, to be “fit” in the neoliberal-ableist standard of the university and be identified as “regular” student, I have to complete my annual review in time. Contrarily, an alternative understanding of the positionalities and identities of those who face different forms of disabilities and/or challenges/resists the normative ableist discourses is called “crip” (McRuer, 2006). So, “crip time” challenges the normative understanding of temporal experience of dis/abled positionalities, identities and practices, and challenges our assumptions about pace and scheduling (Rodgers et al. 2022). Therefore, within this emerging paradigm of understanding and accommodating different abilities, academic institutions need to rethink temporal conceptions like deadlines, productivity, pace, schedules and durations and attempt to sensibilize an alternative temporal dimension of time for academic with or without disabilities.
References
Bailey, M. Race and Disability in the Academy [Online]. The Sociological Review Magazine. 2017, November 9.
McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. NYU Press, 2006.
Rodgers, Jess, et al. “Ableism in Higher Education: The Negation of Crip Temporalities within the Neoliberal Academy.” Higher Education Research & Development, Oct. 2022, pp. 1–14. DOI.org (Crossref), https://doi.org/10.1080/07294360.2022.2138277.
Samuels, Ellen, and Freeman, Elizabeth. Crip Temporalities: An Issue of South Atlantic Quarterly. Vol. 120, No., 2. Duke University Press, April 2021.
Kazi Ashraf Uddin is a doctoral researcher at the University of New South Wales (Australia). His research project looks at the ableist discourses surrounding the identification and perception of the South Asian transgender community, the hijras.