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J Med Ethics 2002;28:203 doi:10.1136/jme.28.3.203
  • Debate

One principle and three fallacies of disability studies

  1. T Koch
  1. Correspondence to:
 T Koch, SFU-Gerontology, 2118 W 13th Avenue, Vancouver, BC, V6K 2S1, Canada;
 tokoch{at}attglobal.net

    Abstract

    A question between John Harris and I is the degree to which lessons may be learned, and insights gained, from a life distinguished by physical differences. He argues it as the “aborting Beethoven fallacy”, I insist on the evidence that what we learn from physical differences may be critical and life enhancing.

    In this journal's recent symposium on disability1 Professor John Harris vigorously defended his general view2 on “disability” and “harm” before a range of critics, including me. This letter is not offered as a rejoinder to his argument but instead presents a brief clarification of a point he obviously misinterpreted.

    A part of my argument for the protection of persons of difference—especially those who might be aborted because of genetic distinctions—was that to eliminate a person who might develop a limitation later in life (Motor Neuron disease, Huntington's, etc) “would be to deprive society at large of people such as physicist Steven Hawking ...”.3 That is, that elimination of a future person of difference on the basis of that difference's presumed “harm” would be to deprive us all of important members of society.

    Professor Harris dismissed this as the “`aborting Beethoven' fallacy”.4 Choosing to terminate the birth of a fetus with inherited syphilis, he argues, “is not to decide that the world would be better off without Beethoven”. While I am unconvinced that the “aborting Beethoven” argument is a fallacy, that argument is tangential to the one I attempted to make in my paper.

    The point I sought to argue centred on the degree to which physical or cognitive distinctions may contribute to the life quality and achievements of individuals who are from birth or later become physically distinguished. That is: physically distinguished conditions may be the impetus to a rich life whose extraordinary and unique development results in consequent achievements. “harm” is balanced, and in some cases outweighed, by resulting “benefit”.

    Stephen Hawking, for example, has written about the manner in which his adaptation to Motor Neuron disease—a physically limiting condition—focused his work and in many ways enriched his life.5 In a real way, his life's work was enabled by his condition. As a US journalist with Motor Neuron disease has said, a physically restricting condition may result in a way of being whose physically enforced tempo requires a detailed and focused perspective that is itself extraordinarily rich and rewarding.6 For this reason a Canadian jurist with this disease called it a “life enhancing condition”,7 albeit one not freely chosen. A plethora of examples detailing the manner in which differences resulting in limitations acted as a catalyst for positive change, and often socially important work, can be marshalled.8

    Some would argue that the emotional and financial cost of care to the family members of persons who are or will be physically or cognitively distinguished results in a secondary “harm”. Opposed to this posture is a literature on and by parents of children of difference.9 A parallel literature reflects the view of caring adults maintaining adult relatives who are physically or cognitively distinguished.10 In these cases the experience is formative and in some cases positively transforming.

    This is a vastly different perspective, I believe, from the one dismissed by Professor Harris as a clear fallacy. It insists that assumptions of “harm” resulting from “difference” must acknowledge the potential benefits (to the individuals involved, their families, and society) resulting from difference.

    The issue of how we are to perceive those among us who are physically or cognitively different is a hoary problem, given new urgency by advances in genetics and genetic engineering. Because the issues of difference are important not only to those affected but to society-at-large, I offer this correction to assure that my limits as a writer do not affect the greater debate in which Professor Harris, others, and myself, are currently engaged.

    REFERENCES

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