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Issues of Death and Dying for Disability Studies

Rachel Purtell, Peninsula College of Medicine and Dentistry
Co-author(s): Professor Len Barton, Professor Peter Beresford, Simon Unsworth MA Hons


In 2006 the issues of death and dying were raised in a discussion session chaired by Professor Len Barton. The session posed some fundamental questions about our responses to death and what, if any, are the implications for Disability Studies around this subject. The discussion uncovered some very pertinent issues for Disability Studies. This abstract is an invitation to join in the discussion and the opportunity to contribute to the development of ideas and insights in this subject.

Broadly speaking, the discussion highlighted two different contexts of the experience of death: Those who had the experience of someone dying in what might be considered 'the normal' course of life, e.g. grandparents, parents, a friend or a colleague, one off rare events, etc, and those who have experienced the death of people as part of an almost everyday experience because of the disability context e.g. the death of school peers within the 'special school' system or those in residential care settings. The death of anyone can cause a sense of loss and distress, but this issue that has been somewhat neglected given that within a disability, including a mental health, context we know that there are high rates of death.

Future discussions on this subject could also consider a much more Societal approach, in that, for disabled people the issues of death are never far away: abortion of impaired foetuses, genetic screening, etc. Debates about treating deteriorating conditions/impairments means that death is omnipresent in the lives of disabled people.

We would like to have another discussion about the subject of death and dying and see what more we uncover and to see if, actually, the disability experience around preparing for, coping with and understanding death may enable disabled people to teach valuable lessons to mainstream services.

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