ABSTRACT The American Journal of Bioethics 1.3 (2001) 57-58 Mark Kuczewski (2001) observes that b... more ABSTRACT The American Journal of Bioethics 1.3 (2001) 57-58 Mark Kuczewski (2001) observes that bioethics could, but so far has not, contributed importantly to public understanding of the role of disability in the life cycle. As Kuczewski cogently argues, fulfilling this potential can advance the field. To do so, bioethicists would exercise their analytic and rhetorical skills in alliance with the disability community. Of course, these prospective allies would have to respect each others' thinking. Otherwise, the beneficial dialogue Kuczewski envisions won't quicken and grow. To engage fairly and fruitfully with each other, bioethicists and disability advocates need to construct a conceptually neutral space. Disability is an essentially contested concept, so to maintain a level discursive field, both bioethicists and the disability community must resist bringing preemptive assessments of disability to the conversation. Each group must relinquish its dogmatically held normative convictions about disability. For each, that will be very hard to do. First, neutrality about the intrinsic value of being disabled must be achieved. Bioethicists will have to give up assuming that disability is intrinsically bad and that reducing the incidence of disability is unchallengeably good. It will be most arduous but enormously beneficial to do so, for nondisabled people commonly suffer from a very limited imagination regarding the abundant possibilities for functioning successfully in atypical or nonoptimal ways (Silvers, Wasserman, and Mahowald 1998). Their skills in exploring assumptions that limit other people's thinking should assist bioethicists in investigating medicine's preference for species-typical functioning. The desirability of familiar ways of functioning should be an open question, ripe for debate, rather than an unquestioned standard for judging disability. As a corollary of this neutral and open stance, bioethicists will not presume that people are benefited by being cured of their disabilities. Nor will they burden disabled individuals with having to persuade the nondisabled world of the comparative harmlessness of many impairments. Undoubtedly, there are legitimate arguments for resisting disability. But bioethicists need to develop systematic criteria for determining when these arguments are sufficiently categorical or compelling to outweigh the risks posed by medical interventions aimed at eliminating disability. In a neutral framework bioethicists will base their beliefs about the difficulties of living with a disability on facts rather than fears. It will be unethical to assume, without empirical confirmation, that people do better by risking medical intervention than by adapting to life with a disability. Philosophical bioethics will then be better positioned to understand the complex dynamic of biological and social elements that divide pathological from benign biological differences, and therefore better able to specify what life cycle factors propel certain biological anomalies across the line from difference to disability. In this same spirit of neutrality, however, disability advocates will not preemptively reject bioethicists' beliefs about the contingent harms of being disabled. Nor will they categorically insist that life with a disability always is worth living. Nor will they presumptively declare that medical interventions aimed at eliminating disabilities express bias against disabled people. Bioethicists understand this so-called expressivist objection as a complaint against the injustice of medical practices that are complicit in devaluing disabled people's lives. But in discussing this subject, neither bioethicists nor disability advocates have been fully coherent. Some bioethicists dismiss the problem by declaring that medicine devalues disability, but not people with disabilities (Buchanan et al. 2000, 278). Their response is not reassuring. Treating disabilities means treating patients. So where medical practice devalues disability, patients with disabilities are made vulnerable by medicine's fatal attraction to normalcy (Silvers 1998), which leads physicians to underestimate the risks disabled people often are subjected to by procedures meant to make them more normal (Satz and Silvers 2000). On the other hand, it is hard to believe that disability advocates who press the expressionist complaint actually embrace its principles. For whoever objects, on the basis of principle, to medical interventions aimed at avoiding disability should eschew prophylactic medical treatment for all disabling conditions, both for themselves and their children. Yet there is no evidence that even the most ardent disability advocates are prepared to do so. Quite the contrary! The point of...
ABSTRACT The American Journal of Bioethics 1.2 (2001) 35-36 Norman Daniels's important in... more ABSTRACT The American Journal of Bioethics 1.2 (2001) 35-36 Norman Daniels's important insights about health being good for justice, and justice being good for health, shape discussion in both medical ethics and political philosophy. It follows from these insights that we may bolster justice by promoting health. It does not follow, however, that promoting health is intrinsically just. Special scrutiny is needed to ensure the neutrality of diagnoses of problematic health. Anomalous behaviors, especially those that diverge from patterns endorsed by social practice, have sometimes been medicalized to justify measures taken for their extirpation. Under the diagnosis that they suffer from poor mental health, people who challenge authority have been confined and subjected to medical intervention. Under the diagnosis that they suffer from frail physical and emotional health, women have been excluded from employment and educational opportunity. These examples show that being thought eligible for healthcare is not necessarily a benefit, a point too often overlooked in debates about healthcare justice under resource constraints (Silvers 1998). That interventions designed to promote health may also be used to promote injustice calls for carefulness in delineating the objectives for allocating healthcare. Special effort is needed to respect both personal and public objectives for healthcare resource distribution. Whether justice is conceived in terms of equality of opportunity to realize desirable outcomes, or instead in terms of equality of these outcomes, just healthcare should advance individuals' achievement of good lives for themselves and also advance our collective achievement of a good society. Healthcare policies likely will seem unjust if they sacrifice the immediate health of individual patients to the abstract prospect of elevating the aggregated public health, but also if they depress the general level of public health in exchange for benefiting a favored few needy patients. These possibilities call for careful aligning of personal and public objectives in allocating healthcare. In a good society, Daniels says, healthcare sustains people as fully participating citizens in political, social, and economic life (2001). In developing a theory of "thick" formal disability rights, I have argued that justice is first of all about interpersonal respect and inclusive social participation (Silvers, Wasserman, and Mahowald 1998; Silvers n.d.). Although endorsing the thrust of Daniels's approach, I reject the supposition that the just route to equitable social participation is "keeping people close to normal functioning." Daniels thinks this medical goal combats the diminution of individuals' opportunities. Regardless of whether disabled people are adjusted to and happy in their condition, Daniels thinks they lack an objectively fair share of opportunity normal or species-typical functioning would provide. But whether an atypically small opportunity range is unfair depends on whether quality of opportunity is less important than quantity. Too much opportunity can cause suffering, for uncertainty about which possible road to take is a familiar life-spoiler. How much better to focus successfully on a few fulfilling options than to be torn with indecision by many glittering ones. Being capable of achievement despite a limited option range is better security for well-being than being granted a glut of options. Daniels's standard of normal functioning is puzzling. Regardless of how satisfied they are, people whose limited function is attributed to impairment are judged lacking their fair share of the opportunity range and deserving the benefit of medical treatment. Regardless of how unsatisfied they are, people with identically limited function but no diagnosis are denied the same beneficial treatment. The short "normal" child misses opportunities calling for average height but "may have an excellent temperament or wonderful social or cognitive skills" and thereby fair opportunity. Yet dwarf children also may have such capabilities and thus the same opportunities as short "normal" children (unless society further limits them by practicing disability discrimination). It is odd to think the short "normal" child's opportunity share is fair but the dwarf child's identical opportunity share is unfair. People beset by disease or injury that induce permanent functional anomalies often experience such changes as disruptive. Patients and healthcare professionals usually agree that acute care's objective is to prevent such disruption of typical functioning. In rehabilitative care, however, patients and professionals may differ about the benefits of typical functioning (Caplan, Callahan...
ABSTRACT The American Journal of Bioethics 1.3 (2001) 57-58 Mark Kuczewski (2001) observes that b... more ABSTRACT The American Journal of Bioethics 1.3 (2001) 57-58 Mark Kuczewski (2001) observes that bioethics could, but so far has not, contributed importantly to public understanding of the role of disability in the life cycle. As Kuczewski cogently argues, fulfilling this potential can advance the field. To do so, bioethicists would exercise their analytic and rhetorical skills in alliance with the disability community. Of course, these prospective allies would have to respect each others' thinking. Otherwise, the beneficial dialogue Kuczewski envisions won't quicken and grow. To engage fairly and fruitfully with each other, bioethicists and disability advocates need to construct a conceptually neutral space. Disability is an essentially contested concept, so to maintain a level discursive field, both bioethicists and the disability community must resist bringing preemptive assessments of disability to the conversation. Each group must relinquish its dogmatically held normative convictions about disability. For each, that will be very hard to do. First, neutrality about the intrinsic value of being disabled must be achieved. Bioethicists will have to give up assuming that disability is intrinsically bad and that reducing the incidence of disability is unchallengeably good. It will be most arduous but enormously beneficial to do so, for nondisabled people commonly suffer from a very limited imagination regarding the abundant possibilities for functioning successfully in atypical or nonoptimal ways (Silvers, Wasserman, and Mahowald 1998). Their skills in exploring assumptions that limit other people's thinking should assist bioethicists in investigating medicine's preference for species-typical functioning. The desirability of familiar ways of functioning should be an open question, ripe for debate, rather than an unquestioned standard for judging disability. As a corollary of this neutral and open stance, bioethicists will not presume that people are benefited by being cured of their disabilities. Nor will they burden disabled individuals with having to persuade the nondisabled world of the comparative harmlessness of many impairments. Undoubtedly, there are legitimate arguments for resisting disability. But bioethicists need to develop systematic criteria for determining when these arguments are sufficiently categorical or compelling to outweigh the risks posed by medical interventions aimed at eliminating disability. In a neutral framework bioethicists will base their beliefs about the difficulties of living with a disability on facts rather than fears. It will be unethical to assume, without empirical confirmation, that people do better by risking medical intervention than by adapting to life with a disability. Philosophical bioethics will then be better positioned to understand the complex dynamic of biological and social elements that divide pathological from benign biological differences, and therefore better able to specify what life cycle factors propel certain biological anomalies across the line from difference to disability. In this same spirit of neutrality, however, disability advocates will not preemptively reject bioethicists' beliefs about the contingent harms of being disabled. Nor will they categorically insist that life with a disability always is worth living. Nor will they presumptively declare that medical interventions aimed at eliminating disabilities express bias against disabled people. Bioethicists understand this so-called expressivist objection as a complaint against the injustice of medical practices that are complicit in devaluing disabled people's lives. But in discussing this subject, neither bioethicists nor disability advocates have been fully coherent. Some bioethicists dismiss the problem by declaring that medicine devalues disability, but not people with disabilities (Buchanan et al. 2000, 278). Their response is not reassuring. Treating disabilities means treating patients. So where medical practice devalues disability, patients with disabilities are made vulnerable by medicine's fatal attraction to normalcy (Silvers 1998), which leads physicians to underestimate the risks disabled people often are subjected to by procedures meant to make them more normal (Satz and Silvers 2000). On the other hand, it is hard to believe that disability advocates who press the expressionist complaint actually embrace its principles. For whoever objects, on the basis of principle, to medical interventions aimed at avoiding disability should eschew prophylactic medical treatment for all disabling conditions, both for themselves and their children. Yet there is no evidence that even the most ardent disability advocates are prepared to do so. Quite the contrary! The point of...
ABSTRACT The American Journal of Bioethics 1.2 (2001) 35-36 Norman Daniels's important in... more ABSTRACT The American Journal of Bioethics 1.2 (2001) 35-36 Norman Daniels's important insights about health being good for justice, and justice being good for health, shape discussion in both medical ethics and political philosophy. It follows from these insights that we may bolster justice by promoting health. It does not follow, however, that promoting health is intrinsically just. Special scrutiny is needed to ensure the neutrality of diagnoses of problematic health. Anomalous behaviors, especially those that diverge from patterns endorsed by social practice, have sometimes been medicalized to justify measures taken for their extirpation. Under the diagnosis that they suffer from poor mental health, people who challenge authority have been confined and subjected to medical intervention. Under the diagnosis that they suffer from frail physical and emotional health, women have been excluded from employment and educational opportunity. These examples show that being thought eligible for healthcare is not necessarily a benefit, a point too often overlooked in debates about healthcare justice under resource constraints (Silvers 1998). That interventions designed to promote health may also be used to promote injustice calls for carefulness in delineating the objectives for allocating healthcare. Special effort is needed to respect both personal and public objectives for healthcare resource distribution. Whether justice is conceived in terms of equality of opportunity to realize desirable outcomes, or instead in terms of equality of these outcomes, just healthcare should advance individuals' achievement of good lives for themselves and also advance our collective achievement of a good society. Healthcare policies likely will seem unjust if they sacrifice the immediate health of individual patients to the abstract prospect of elevating the aggregated public health, but also if they depress the general level of public health in exchange for benefiting a favored few needy patients. These possibilities call for careful aligning of personal and public objectives in allocating healthcare. In a good society, Daniels says, healthcare sustains people as fully participating citizens in political, social, and economic life (2001). In developing a theory of "thick" formal disability rights, I have argued that justice is first of all about interpersonal respect and inclusive social participation (Silvers, Wasserman, and Mahowald 1998; Silvers n.d.). Although endorsing the thrust of Daniels's approach, I reject the supposition that the just route to equitable social participation is "keeping people close to normal functioning." Daniels thinks this medical goal combats the diminution of individuals' opportunities. Regardless of whether disabled people are adjusted to and happy in their condition, Daniels thinks they lack an objectively fair share of opportunity normal or species-typical functioning would provide. But whether an atypically small opportunity range is unfair depends on whether quality of opportunity is less important than quantity. Too much opportunity can cause suffering, for uncertainty about which possible road to take is a familiar life-spoiler. How much better to focus successfully on a few fulfilling options than to be torn with indecision by many glittering ones. Being capable of achievement despite a limited option range is better security for well-being than being granted a glut of options. Daniels's standard of normal functioning is puzzling. Regardless of how satisfied they are, people whose limited function is attributed to impairment are judged lacking their fair share of the opportunity range and deserving the benefit of medical treatment. Regardless of how unsatisfied they are, people with identically limited function but no diagnosis are denied the same beneficial treatment. The short "normal" child misses opportunities calling for average height but "may have an excellent temperament or wonderful social or cognitive skills" and thereby fair opportunity. Yet dwarf children also may have such capabilities and thus the same opportunities as short "normal" children (unless society further limits them by practicing disability discrimination). It is odd to think the short "normal" child's opportunity share is fair but the dwarf child's identical opportunity share is unfair. People beset by disease or injury that induce permanent functional anomalies often experience such changes as disruptive. Patients and healthcare professionals usually agree that acute care's objective is to prevent such disruption of typical functioning. In rehabilitative care, however, patients and professionals may differ about the benefits of typical functioning (Caplan, Callahan...
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