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HEALTH ETHICS TODAY
The social construct of health and medicine Dr. Gregor Wolbring Science and technology (S&T) have had throughout history, and will have in the future, both positive and negative consequences for humankind. It is said that S&T is value-neutral, and that inanimate technological inventions cannot harbour values. But these claims are false, perhaps simplistic, perhaps simply beside the point. As the result of human activity, S&T is imbued with intention and purpose. The goals for which S&T are advanced are value-laden, reflecting the cultural, economical, ethical, spiritual and moral framework of society. Technology follows social norms. S&T embodies the perspectives, purposes, prejudices and objectives of society, and of powerful social groups within society. Many technologies including Bio/Gene/Nano-technology are sold as a tool for fixing conditions described variously as disabilities, impairments, diseases, and defects, and for diminishing suffering. These promises raise quite a few questions. Which and whose values and perceptions are reflected in the definitions of the above conditions and the attached ‘suffering’? Which and whose values and perceptions are reflected in the choice of solutions for the ‘problem’ of these conditions? How do the predominant societal values and perceptions that define these conditions, its attached suffering, and the proposed solutions affect the self-esteem and self-understanding of the people involved? Does the self-perception of people who are labeled (the afflicted) match the perception that the non-afflicted have of the ‘afflicted’? Do ‘afflicted’ people define their ‘problems’ and the solutions to them in the same way as the ‘non-afflicted’ do? Do the ‘afflicted’ and the ‘non-afflicted’ have the same values and perceptions about what constitutes a good life? If we look at the common understanding of disabilities, impairments, diseases and defects, they all seem to share one feature: they define a ‘subnormal’ state of existence. A “defect” implies that something is faulty and needs to be fixed. An ‘impairment’ implies that the person has a “subnormal” set of abilities. Certain functions, deemed intrinsic to a normal state of existence, are impaired. “Disease,” in its strictest definition, is seen as a deviation of normal biological functioning. “Health” is characterized as the optimum functioning of biological systems. Disease is the lack of health. An “abnormal” condition is a specific deviation from a statistically defined norm. “Disabled” is used to describe a person who has an intrinsic defect, an impairment, disease or chronic illness leading to subnormal functioning and expectation. Suffering, in the above understanding of disabilities, impairments, diseases and defects, describes the situation of having to live in an undesirable (subnormal) state of existence. These views put forward by the ‘non afflicted’ contrast sharply with the perspective of the ‘afflicted’? For example in the case of the characteristic ‘spina bifida’ it seems to be a forgone conclusion that ‘spina bifida’ is a medical condition in need of prevention through, for example, the use of folic acid supplement in the mothers’ diet. But one of the resolutions of the 12th International Conference for Hydrocephalus and Spina Bifida in Toulouse, 2000 states: “That people with spina bifida and hydrocephalus live a full life with equal value to that of any other citizen and they should not be seen as a medical condition. Their views should be sought and heard by Governments and Health professionals, who should acknowledge the right of people with spina bifida and hydrocephalus to speak for themselves.” (Toulouse, 2000) At the 8th working meeting of the UNESCO International Bioethics Committee the group Inclusion International (a group representing people with Down Syndrome and their parents and friends) was listed as a ‘patient’ group. Inclusion International denounced this description as they do not see people with Down Syndrome per se as patients and they see Inclusion International as a human rights group not a patient group. Many people born after their mother took the drug thalidomide are labeled as people with a birth defect, whereas many ‘thalidomiders’ see themselves as people with non-mainstream body compositions. Many deaf people see themselves as part of a distinct culture whereas non-deaf people see deafness often as a defect. It becomes evident that the self-perception of the ‘afflicted’ is not accepted by the ‘non-afflicted’ if it does not suit them. Bioethicist Dan Brock is quoted from one of his lectures as having said “Our notion of how good a person’s life is [isn’t] fully determined by their own [the disabled] subjective self-assessment” (Rivera y Carlo, 2002). Furthermore, the notion that disability is not a medical individualist problem but a societal problem (see Wolbring 2001 for a more detailed description of the different models) is negated by many (Harris, 2000; Singer, 2001). The dynamic of associating certain conditions with subnormal characteristics or functioning, the above-described dichotomy of perception between the ‘afflicted’ and the ‘non-afflicted’, and the non-acceptance of the views of the ‘afflicted’ has serious consequences. One is the concept of ‘normative creep’. Reality is that the time where we fix people only to fit the norm will be over soon. Soon we will be able to increase the ability of beings beyond the existing norms whether through genetic or non-genetic (bionic) augmentations. As we like to link the norm to abilities, these new abilities will become the new norm, as many people will see these increases in abilities as desirable. This means that people who are seen as ‘normal’ will become the sub-normal the ‘disabled’. And as their self-perception is of no consequence they will be forced to augment themselves. Furthermore, the reality that others decide what is acceptable will lead to the reality that parents will have to act on these prevailing societal perceptions by making sure that their children will have the best abilities possible. Not doing so will be seen as child neglect or abuse. (Harris, 2000) Increasing interventions at the level of the individual to achieve norms and health will move away from the concept of heath as described in the Jakarta declaration on Health (Jakarta, 1997), which assumes that health is more than the normative individual existence. According to the Jakarta declaration on Health, pre-requisites for health are peace, shelter, education, social security, social relations, food, income, empowerment of women, a stable eco-system, sustainable resource use, social justice, respect for human rights and equity. Above all, poverty is the greatest threat to health. The declaration states further that “Creating supportive environments is about recognizing that people's health is affected by their environments whether it be physical, cultural, social or economic”. Unfortunately our focus on disability, impairment, disease and defects as individual flaws to be fixed, will lead us away from the holistic approach of the Jakarta declaration and will not fix the problems of poor health. References Harris, J. (2000) Is there a coherent social conception of disability? Journal of Medical Ethics, 26, Seiten. 95-100. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10786318&dopt=Abstract) Jakarta Declaration on Leading Health Promotion in the 21st Century (1997, 21-25 July) From the Fourth International Conference on Health Promotion, Jakarta. http://www.who.int/hpr/archive/docs/jakarta/english.asp Rivera y Carlo, R. (2002) Targeting the disabled. Boundless Webzine. Retrieved from http://www.boundless.org/2002_2003/features/a0000685.asp Singer, P. (2001) Response to Mark Kuczewski. American Journal of
Bioethics 1(3) 55-57 Wolbring, G. (2001) Bioethics and Disability: Making Assumptions Explicit. Health Ethics Today 12(1). http://www.ualberta.ca/~bioethic/HETVol12No1/page14.asp
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Updated September 7, 2010
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