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UBC Theses and Dissertations

Survival of the misfits : dependency care as a site for political representation Munawar, Sarah


From physicians advising families to pull the plug on the to-be-disabled, to the eugenics movement and sterilization laws, at the core of threats to the existence of dependents with severe disability are narratives of tragedy and misfittedness. Through this horizon, the embodiment of difference is ostracised as deviancy or deficiency and dependents living with severe disability are least recognizable as political subjects due to their structural positioning--casting relations of care to the margins of public accountability. What increases the risk of death, violence or injury is not the dependencies or corporeal embodiment of individuals with severe disability, but rather the lack of institutional support for relations of care--their primary means to sustenance. The multi-dimensional practice of care, as it arises from dependency and corporeal vulnerability, is a political resource through which dependents with severe disability can exercise a greater degree of authorship and self-definition in the democratic claims-making process. Central to this task is mapping the alignment between the values of attentiveness and responsiveness, at the heart of the ethics of care, and what democratic representation draws its legitimacy from: proximity and attention to the particularity of the represented. The shared perspective between dependents and dependency workers, looking out from a dependency relation, when mobilized in the process of representation, paves way for the empowerment of the dependent because it increases not only his self-esteem as an individual, but also, the performance of institutions of care--shielding dependents from the differential distribution of precarity. The process of representation, as exercised through the activity of care, must be as fluid as the move from wheelchair, to walker, to cane, to his one's own legs—whatever the shifts in capacities may be for the dependent, the dependency worker adjusts her care through attentiveness. This requires reconciling the politics of presence with the physical (the corporeal situation of the political subject): designing institutions in a way maintains an ever-present, ear to the ground, process of representation between the representative and the represented, which is also, fine-tuned to the particularity of the individual's structural positioning, the changing human body, perspectives etc.

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