Disability

the feet of a person sitting in a wheelchair

Several key debates in practical ethics revolve around disability. Is it permissible for prospective parents to use reproductive technology to screen against disabilities such as Down’s syndrome or even deafness, or is it just a form of dangerous eugenics? Don’t such parental choices express a repugnant negative statement about the value of disabled people and their lives? On the other hand, there are disabled couples who want to use reproductive technology to create children who are deaf like them. Would that be wrong? How could it be wrong if the resulting child wouldn’t have even existed otherwise?

Another set of important questions revolve around justice, prejudice, and normality. On the widespread ‘medical model’ of disability, we should think of disability as akin to disease: it is a deviation from biological normality that needs to be cured or corrected. But is there anything inherently bad about deviating from the biologically normal? Why is normality important? According to the opposing ‘social model’, defended by many disability activists, disability is no more than the product of social prejudice against the different and atypical. But even if pernicious prejudice against disabled people is still pervasive, is it really the only reason for the difficulties faces by many disabled people?

Resources

Death or Disability?

Wilkinson, D., (2013), 'Death or Disability?  The 'Carmentis Machine' and decision-making for critically ill children'. (Oxford, Oxford University Press)

  • Written by an expert in both paediatrics and ethics
  • Illuminates the medical and scientific aspects of ethical dilemmas
  • Draws on the latest in neuroscience
  • Moves the debate forwards, with practical suggestions

This book reflects a remarkable blend of philosophical sophistication and clinical expertise . . . Wilkinson's book will be mandatory reading for philosophers and clinical ethicists who are writing on, or working with, critically ill children and their parents. - J. Paul Kelleher, Mind

this is a wonderful book: wise, clever, humane, realistic and humble. It will be, and richly deserves to be, the cornerstone of academic and practitioner debate about this terrible, and terribly important area of ethics and medicine. - Charles Foster, European Journal of Health Law

His style, clear and simple for a work on a subject of considerable complexity, and yet profound in its way of dealing with issues more related to philosophy and ethics, make this book a read of great interest not only for professionals pediatric medicine, but also for affected families and for anyone who wants to know the problems of bioethics from a multidisciplinary perspective. - Revista Española de Discapacidad

the best book of the decade in bioethics . . . this is a book that must be read by everybody who is seriously interested in the bioethical issues that arise in neonatal intensive care or, more generally, in decision making for children with chronic, debilitating or life-threatening conditions. - John D. Lantos, Notre Dame Philosophical Reviews

this was an interesting read, comprehensive, analytical, and thought-provoking . . . Wilkinson does a good job of articulating and providing evidence to support his point of view. He successfully accomplishes what he sets out to do, while keeping the reader entertained with historical points, clinical examples, and philosophical theories and vignettes. - Marlyse F. Haward, The American Journal of Bioethics

The author skilfully draws on his training in philosophy, bioscience and clinical practice to offer an analysis that is original, not merely in content but also in form. Wilkinsons comparison of the Carmentis Machine with contemporary neuroimaging is inspired. - Deborah Bowman, Times Higher Education Supplement