Pathways to the Reconstruction of Selfhood in Chronic Transformative Disability: The Example of Spinal Cord Injury

Abstract

This essay contrasts the responses of persons with stroke described by Kaufman with the reflections of persons with spinal cord injury (SCI). It is suggested that, over the last decade or so, mainstream medicine has become less reductionist and more humane in focus. Many with SCI become reconciled to their new bodies, though this may take years. It is not clear whether this apparent difference in the responses of those with stroke, related by Kaufman, reflects their older age or other factors. Perhaps it takes longer than 2 to 3 years for some people to become reconciled to profound alterations in their embodiment. Medical and social models of impairment are discussed. The effects of personal reductions in function may be lessened in significance through appropriate environmental adaptations and changes in social attitudes. In agreement with Kaufman, the importance of an effective personal assistant/employer relationship is illustrated in relation to those with quadriplegia. Overall the perspective of persons with SCI is not as pessimistic as that of those with stroke, as related by Kaufman. However, her plea for a deeper and richer exploration of the lived experience of chronic impairment is supported for many reasons.

Keywords:

• chronic neurological impairment
• spinal cord injury
• subjective response