From Sahiwal to Manchester: genes, genealogy and cultural heritage

Naseem, Sumaira Khalid (2023) From Sahiwal to Manchester: genes, genealogy and cultural heritage. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Laryngo-onycho cutaneous (Loc) syndrome is a medical condition which has been widely pathologised and racialised in medical literature, often tied to ungrounded and othering assumptions about Pakistani heritage and Islamic identity. As an impairment category, Loc’s creation has often led to people with Loc and their families feeling stigmatised, with reductive medical narratives eroding the complexities of history and heritage in place of an overly simplistic and sometimes hostile, racialised mythology of the condition. Drawing upon my experiences as a person living with Loc, this thesis comprises a substantial piece of critical analysis, alongside a film and other cultural artefacts, deploying creative and critical methodologies in order to develop an alternative, composite Loc narrative and thus a more holistic and ethical set of stories about the meaning(s) of living with this rare condition. Drawing upon histories and auto/biographical accounts of particular diagnostic categories and their effects, alongside an engagement with medical literature and creative practice, the thesis thus explores the multiple, intersecting and sometimes contradictory ways in which we understand embodied experience and sensory, cognitive and physical differences. In foregrounding this complexity, the thesis facilitates a more complete under- standing of Loc beneficial both to people living with it and to medical professionals involved in its treatment.