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Sandeep R. Singh is an Assistant Professor of Comparative Literature at Ambedkar University Delhi, India. He teaches courses on Disability Studies, World Literature, Literary Comparison, Narratology and Life-Writing at the Undergraduate and Postgraduate level. He is a co-applicant on the Disability Matters Project funded by Wellcome Trust, United Kingdom. His research interests lie in the areas of Critical Disability Studies,  Life-writing, and Narrative Discourse.

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To restore the human subject at the centre-the suffering, afflicted, fighting, human subject-we must deepen a case history to a narrative or tale; only then do we have a 'who' as well as a 'what', a real person, a patient, in relation to disease-in relation to the physical.     

Oliver W. Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales, viii

This paper aims to engage with an experiential perspective in understanding disability discourse from the notions of ability, normalcy, capacity and subjectivity. Simultaneously, attempting to trace disability as an epistemology. The paper will also focus on the presence of disability inclusive health research environments, and on thinking about how to cultivate a new generation of disabled and disability-positive health researchers.

My interest in life narratives of illness and disability began to take shape when I was a student in the Masters Programme at the Centre for English Studies, Jawaharlal Nehru University, New Delhi. I was fortunate enough to meet and be taught by the late Dr. Navneet Sethi who was a fellow disabled person and mentor, invaluable teacher and a beloved friend. She was also my Ph.D. supervisor in the formative years of my thinking through the ideas of disease, illness stories and the life narratives of the disabled. A lot of the ideas I thought through were predominantly an outcome of enriching conversations that I had with her about disability discourse, human predicaments, and narrative as therapy in general, and also about her illness and disability in particular. Her experiential narratives were about her lived realities of the everyday. She was a person with ailing lungs and a failing spinal cord, and required constant care, attention and a life support system for survival.

I came to understand how teaching and learning from her students, as she explained it, gave her joy and satisfaction amidst her struggles to stay afloat in her disabled body. There was one instance I recall very vividly; she was late for a class and promptly apologised the moment she arrived. We were quick to point out that she was only occasionally late whereas students came in late all the time. If she could help it, she told us, she wouldn’t be late at all⸺it was her body that planned her day, not her mind. It was her body that decided how far she could go, and for how long.

As for her classroom space, she loved it immensely. She talked about it as a place where she could flourish, foster deep personal and social relations, study emotions, and through the creative lens make the textual contextual, allowing personal narratives to be the source of wisdom about life. From her students, she would say, she drew the strength to go on with life, as her struggle for survival continued.  She also taught me to think about disability from the vantage point of epistemology, and how Disability Studies exists at the uneven boundaries of the social, foregrounded in resistance and celebratory in its insistence that disability is neither tragedy nor inspiration but a satisfying and enjoyable way of “being in the world”. This led me to think about disability as an epistemological resource to reflect on fundamental concerns within society such as the meaning of family and community, the role of the state and the very meaning of what it means to be human.

This opened up new vistas of learning in the classroom for me, and as a fellow disabled person, she would talk to me about how her illness and disability informed her academics as well as her politics. The embodied experience of disability, and the bearing it had in her classroom discussions and the courses she taught provided me with a broader understanding of disability, its lived realities, and the life narratives  about varied forms of writings.

As Arthur W.  Frank observes in The Wounded Storyteller: Body, Illness, and Ethics, “Ill… People tell stories not just to work out their own changing identities, but also to guide others who will follow them. They seek not to provide a map that can guide others—each must create his own—but rather to witness the experience of reconstructing one's own map….Storytelling is for an other just as much as it is for oneself" (17). The abovementioned observation by Frank, while acknowledging the self-exploratory nature of this kind of writing and further recognising that these narratives guide others on the same trajectory, also interestingly situates illness narratives as universal in scope, indicating that they invariably appeal to everyone.

Furthermore, this form of storytelling by the ill and the disabled carries within it the potential to rewrite the relationship between the margin and the centre. The embodied nature of our existence and the anxieties of illness, disease, disability and the vulnerabilities thereof mark the contours of our preoccupation with bodily perfection. It is this idea of bodily perfection that foregrounds the concepts of illness, disease and disability, and paves the way for the body to mediate its identity. One way to conceptualise this mediation is to understand that the identity thus arrived at is “embodied” i.e. determined by our being in the world while negotiating the realities of limitations that arise due to labelling and classification of the ill and the disabled. This results in contingencies of stigma, trauma, discrimination, struggle for survival and constant disruption of life, perpetuated by social disablement that occurs through the normative order and ableist rhetoric. To counter this tyranny of a dominant, hegemonic discourse, the ill and the disabled (through their embodied identity and the experiences of  everyday realities) make a claim for personal experience to be used as a reference for self-expression.

In my own life, having undergone eye surgeries as a blind person, I have only ever been a passive recipient of healthcare. I never knew what procedures were performed on me, what spaces I was taken to or who the doctors or nurses were. As their hands ran over me in the process of the surgery, I couldn't run my hands over them in return; to gather information about who they were and what they were doing. As a young child this was a particularly traumatic experience that led to a fear of hospitals and suspicion about medical care. These experiences were instrumental in cementing my conviction that healthcare experiences need to be more inclusive.

Health research often ignores the specificities of disabled people’s lives and the health inequalities that they endure as a consequence of disabling systemic factors. I am of the opinion that, critical disability scholarship must create a level playing field so that we can proactively thrive rather than passively live with our disabilities.

As a disabled early career researcher, I strongly believe that disabled people shouldn't merely be  considered consumers of health. They should play a pivotal role in guiding health research and practice. We must position people with lived experience of disability as experts and advocates in the formulation of health priorities.

References

Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1997. Print.

Sacks, Oliver W. The Man Who Mistook His Wife for a Hat and Other Clinical Tales (1970). New York: Touchstone, 1998. Print.