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 he Claimed Neutrality of Disability

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التوقيع : رئيس ومنسق القسم الفكري

عدد الرسائل : 1500

الموقع : center d enfer
تاريخ التسجيل : 26/10/2009
وســــــــــام النشــــــــــــــاط : 6

he Claimed Neutrality of Disability Empty
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مُساهمةhe Claimed Neutrality of Disability


Many plausible accounts of well-being can explain why life can and often does go comparably well for people with most disabilities relative to people without disabilities. There are unresolved issues about how broadly the objective elements of well-being can be framed without becoming so broad as to lose distinct content. But these questions may be less about disability and more about objective list theories generally.
Some philosophers have argued more affirmatively that disabilities are “neutral” characteristics or “mere differences”, with no average or generally adverse impact on well-being. They argue that disability should be regarded as a characteristic like race or sex, which are widely seen as neutral with respect to well-being, once discrimination and its effects are factored out—or even if they are not. Disability is grouped with these characteristics in anti-discrimination law. But it is also grouped with those characteristics by writers who argue, more ambitiously, that disability, no less than race or sex, is a neutral characteristic—one that, in the absence of social exclusion, does not make lives go any worse on average (Barnes 2009a; McBryde-Johnson 2003). These writers do not deny that becoming disabled may make life go worse for some time, but no more so than other wrenching changes, like losing a job, home, or loved one. In the former case as well as the latter, the bad or harm is in the transition—in the loss and disruption—and not in the end state. Any disadvantage that persists after the transition is plausibly attributed to social factors.
There are various ways to distinguish disabilities, on the one hand, from neutral characteristics like race and sex, on the other. The distinction can be easily made on a maximalist view of well-being which holds that life is presumptively better with more valuable capacities. In contrast to race and sex, disabilities, by definition, involve fewer valuable capacities, so they presumptively make life go worse. It is simply better to have more senses, more intelligence, and a greater range of motion, even if they do not make one happier, have limited practical value, and do not advance one’s specific projects. This view regards standard disabilities as among the most salient limitations to which humanity is subject. Less is always worse, although how much worse will depend on contingent circumstances. But many philosophers reject maximalism, in part because they balk at the implication that we should strive to acquire, and bear children who will possess, the greatest number and range of possible capacities.
Jeff McMahan offers a non-maximalist argument against the neutrality of disabilities, based on a view of how people with single impairments flourish despite them:
اقتباس :
A single disability may seem neutral because it can be compensated for by other abilities that develop to fulfill its functions. Blindness, for example, may be compensated for by the enhancement of other senses, particularly hearing. But if disabilities were individually entirely neutral, they ought also to be neutral in combination; but they are not (2005: 96).
Some might dispute McMahan’s claim that disabilities cannot be neutral in combination, but our focus here is his claim that neutrality for individual disabilities implies neutrality in combination. In support of this claim, he argues the effects of disabilities on well-being “are largely additive”, because with each further disability, it becomes harder to compensate for other disabilities. This argument assumes that the possibility of living as well without as with any given ability depends on the possibility of compensating for its absence. This assumption may be mistaken: the possibility of flourishing with a single disability may depend not on compensation but on what we could call “saturation”. A blind person can live as well as a sighted one not because she develops better hearing—she may not—but just because the senses and abilities she has are more than adequate to allow her to live as fully and richly as possible. As Asch and Wasserman argue:
اقتباس :
[H]uman beings enjoy a fortunate redundancy in many of the capacities that are instrumental for, or constitutive of, valuable human goods and activities, from intimate relationships to rewarding work. Humans with a standard complement of senses and motor functions rarely use all of these functions in achieving such goods, and humans lacking those skills can use only some. But those are usually sufficient (2005: 208 ).
There may be a limited number of ways to realize important human goods like rich aesthetic experience, and those with disabilities may have fewer ways to do so. But the ways they have may be as good as the ways they lack, and employing the ones they have need not be seen as compensating for their inability to employ the ones they lack. Having more ways to realize a good does not mean that you can realize it more fully.
This response, however, suggests two final sources of difference, both of which involve what we might call “welfare security”. Even if people with a single major disability can live as well as people without one, 1) it requires more effort or luck for them to do so, and 2) they are at greater risk of lacking the means to do so. The first claim is that the fewer means there are to achieve a particular good like rich aesthetic experience, the more difficult it may be to achieve it. An individual who can meet his aesthetic quota, so to speak, with sunsets or symphonies, doesn’t have to work as hard or need as aesthetically rich an environment as one who can meet his quota only with symphonies. The second claim is that people with single disabilities are at greater risk than people without any disabilities of losing the means to achieve various goods, since they have a smaller surplus or reserve. The plausibility of these claims depends on a myriad of unresolved issues: Is there an irreducible plurality of objective goods and if so, how they are individuated? Are there a limited number of means for attaining those goods? If it requires greater effort to attain a particular good with fewer functions, does that additional effort itself enhance or reduce well-being?
Another argument for the conclusion that disabilities entail setbacks to well-being is suggested by the human variation model (Scotch and Shriner 1997). This treats disabilities not as a distinct category, but as conditions falling on a continuum of physical or mental difference. It is not intrinsically disadvantageous to be near the end of such a continuum but may be disadvantageous in a society in which only a small proportion of people fall near that end. This is because many of the physical structures and social practices of that society will inevitably be designed for its average members. No matter how just a society, how committed to inclusion, there would still be some disadvantage in being toward the end of the spectrum. There may be some truth to this claim, but it is easy to overstate. Universal design advocates argue that it is, or will become, feasible to build structures and practices that fully or equally accommodate individuals across large ranges of human variation. Even if their claims are also overstated, they suggest a need for caution in concluding that minority status is intrinsically disadvantageous.
Perhaps the most tenacious source of resistance to the “mere difference” claim comes from a stubborn asymmetry, which appears to distinguish disability from race and sex and to challenge its neutrality. We generally seek to prevent individuals who are not disabled from becoming disabled, but not vice-versa. We strongly support measures to prevent disability, if prevention can be accomplished without coercion, harmful side effects, or the loss or disruption of personal or narrative identity. Consider a form of prevention widely seen as unproblematic: taking folic acid during pregnancy to prevent spina bifida. Some governments mandate that certain food be enriched with folic acid. These mandates are controversial, but the controversy concerns the issues of involuntary medication and possible side-effects rather than the intended preventative effect. Few, if any, disability advocates object to these mandates, any more than they object to the myriad safety measures imposed by the modern state, from requiring seat belts to restricting teratogenic drugs. Many object to the needlessly grim depiction of disability in some safety campaigns; few to the campaigns themselves (Emens 2012).
No such asymmetry exists for other allegedly neutral characteristics. There would be strong opposition to government measures to prevent them, alter them, or reduce their incidence. Imagine that a dietary supplement as safe as folic acid could alter the sex of the fetus, or lighten its complexion. We suspect that most people would find it troublesome for pregnant women to take that drug voluntarily, let alone for the government to put it in the food supply. Or imagine a fluoride-like substance with a similar effect, which could be safely added to the water supply. Fluoridation to prevent female sex or dark skin would strike most people as offensive, even though it would not prevent the existence of anyone on the basis of a disfavored characteristic, at least if personal identity survives alteration of race or sex. The claim that women or people of color lead worse lives on average due to pervasive discrimination would not be seen as a justification for changing sex or race. Undertaken by an individual, it would be seen as complicit with sexism or racism regardless of its motivation; undertaken by the state, it would be seen as an egregious expression of racism or sexism. Public health measures to prevent disability, like dietary supplements, would not provoke similar objections. In general, measures to alter other significant characteristics—not only race and sex, but minority cultures, sexual orientations, and social identities—would be considered unjustifiable or only justifiable in special circumstances. By contrast, measures to prevent disabilities are considered presumptively acceptable.
The contrast between sex and race, on one hand, and disability on the other, is especially striking in light of the fact that in the former, measures to alter stigmatized social identities are often regarded as more objectionable than measures to alter dominant social identities that are not stigmatized. Just the reverse is true for disability. Giving deaf children cochlear implants is somewhat controversial; deafening hearing children would be considered criminal abuse. And this would be so even if the children were too young to have the self-conscious experience of hearing, had no other effects from being deafened, and faced no discrimination on the basis of deafness. These contrasts raise the question of whether the asymmetry with respect to disability-prevention is compatible with the view that disabilities are neutral characteristics—that they do not make life go worse overall.
Recently, Elizabeth Barnes has sought to challenge this perceived asymmetry between measures to prevent or correct disabilities and other significant characteristics. She attributes much of the objection to changing sex or gender to moral considerations equally applicable to “correcting” disability: 1) they would violate the individual’s right to control her own body unless consented to; if consented to, they would be permissible elective procedures (as would, Barnes maintains, procedures to create disabilities); and 2) such procedures generally involve considerable loss and transition costs—but so do procedures to correct disabilities, as many “cure” narratives attest. For preventative measures not involving bodily modification, loss, or transition costs, Barnes argues that the claimed difference between preventing disabilities and preventing less favored races or sexual orientations is simply question-begging—no good reason has been given to accept the former and reject the latter, merely the “negative-difference” view the intuition is supposed to support.
Barnes’ argument, not surprisingly, has proven controversial. Several commentators sympathetic with mere-difference claims for some disabilities have questioned Barnes categorical claim for all disabilities; others have questioned whether she is too quick to accuse those claiming an asymmetry in the case of preventative measures of begging the question (see Dougherty 2014).
Yet even if disability could be regarded as neutral if other features contingently associated with it, such as social exclusion, physical pain, and the loss of valued functions, are factored out, that conclusion might have limited practical significance for decision makers who cannot factor out those features. As noted earlier, the question of whether it is disadvantageous may have a different answer for those who can significantly modify the physical and social environment and those who cannot. Many decision makers, from prospective parents to healthcare policy makers, will fall in the latter category.
Before discussing specific decision making contexts, then, we need to consider arguments that significant disabilities can be neutral, in the sense of not reducing overall well-being, even if various contingent harmful features are not excluded. We will examine two grounds for claiming that disabilities, including painful, disruptive, and stigmatized ones, need not reduce overall well-being, although they may still be conditions worth preventing: 1) if disabilities deny some valuable experiences and achievements, they provide others, which may not be accessible, or may be less accessible, to nondisabled people; and 2) there is a non-additive relationship between parts or aspects of a life and life as a whole.
Barnes (2009a) argues that having a disability can make an individual’s life more difficult and challenging at some points without making it go worse overall, or even making it more probable that it will. The challenges of disability are like those of other minority characteristics such as homosexuality; facing those challenges can give a life greater depth or direction. For example, some individuals who are disabled in adolescence or adulthood find that their previously shallow or aimless lives gained focus and purpose from the challenges they faced, and some individuals find that they acquired new skills or interests more rewarding than those precluded by their impairments. Because such enriching responses are so common, there is no basis for concluding that people with disabilities have a lower quality of life overall. But because disabilities
اقتباس :
are, in general, the kinds of things that make life harder—they impose limitations, they cause pain, they subject their bearers to stigmas and discrimination (2009a: 339)
—they are associated with with harms and should be prevented in some circumstances. They should not, however, be regarded as “negative difference-makers”—conditions that necessarily make lives worse overall.
In blocking the inference from disability as a harm to disability as a negative difference-maker, Barnes adduces instances of the positive consequences that disabilities have had for specific individuals, despite or sometimes because of the “local” hardships they cause. It may be, however, that no positive consequences are needed to “neutralize” the hardships associated with a disability. Those hardships may simply get absorbed in the immense complex of factors that make a life go better or worse. It is only on a simple additive view of the relationship of parts to whole that a local harm would necessarily make a life go worse unless compensated for. It is difficult to be more precise about the impact of disability on whole lives, however, because it is not clear how the goodness or badness of parts of a life contribute to the goodness of the whole, on either objective or subjective accounts of well-being (Feldman 2008). David Velleman has argued that whatever one’s particular theory of individual well-being, the parts of a life do not contribute to the goodness of a life additively. That is, the goodness of a whole life is not the sum of the goodness of its parts. Instead, the goodness of a whole life is to be understood in terms of the narrative relations between its various parts. From this perspective, successes or failures at particular times in one’s life can retrospectively alter the meaning or significance of earlier ones (Velleman 1991).
Recent accounts of noncomparative harm (Harman 2009; Shiffrin 2012, 1999) provide additional reasons to challenge the inference from disability as harm to disability as negative difference-maker. These accounts reject the prevailing, counterfactual analysis of harm as a setback to an individual’s interests with reference to some baseline—her past, her expectations, or the average of her group or society. Instead, they understand harms as fundamentally bad states or events, like pain, disability, and death; states or events that (proponents of these accounts claim) can be regarded as bad without reference to any baseline. On these views, an individual is harmed merely by suffering pain or injury, regardless of whether that pain or injury leaves her worse off overall. She is harmed by painful life-saving surgery, although that averts a greater harm, or life-transforming disability, although her life may go much better as a result.
Obviously a critical question for these accounts is what makes something a noncomparative harm (Bradley 2012). Harman (2009) offers no general characterization of noncomparative harms; Shiffrin characterizes such harms in terms of a significant chasm, conflict, or other form of significant disconnect between one’s will and one’s circumstances (2012: 388). Disabilities, injuries, and illnesses and typically regarded as harms in these terms because they “often significantly impede one’s capacity to achieve substantial congruity between one’s will and one’s life (2012: 384). Shiffrin recognizes both that one’s circumstances may narrow that chasm considerably, and she considers it a strength of her account “that it can recognize quotidian conditions such as ordinary conditions as harms” (2012: 387, n. 46). Although Shiffrin does not take this additional step, it would seem that if ordinary conditions can be harmful in damaging one’s agency, extraordinary ones can be harmless, if they were congenital, predictable, or successfully adapted to, such that congruity between one’s will and one’s life is never lost, or is quickly restored. Further, although Harman and Shiffrin, like Barnes, regard the onset of most disabilities as harms, they also, like Barnes, hold that such harms need not make life go worse overall.
Another factor associated with disability—reduced lifespan—arguably has an adverse impact on well-being. Many disabilities, or their associated disease processes, result in lower-than-average life expectancy, though it is worth emphasizing that the relationship between disability and reduced lifespan is contingent, and so even if reduced lifespan necessarily reduces well-being, it would not follow that disability necessarily reduces well-being. Moreover, it is not clear that reduced lifespan necessarily reduces well-being. It is at least arguable that living to 80, with the last 5 years of one’s life in severe pain, does not yield more well-being than a life of 75 relatively painless years. And it is at least arguable that longer lives correlate with greater well-being because they enable one to pass through all of life’s stages—childhood, adolescence, young adulthood, middle age, and gradual aging—but that having passed through all of life’s stages, additional years yield small increases in well-being. Clearly, these are complicated issues that deserve more attention. We simply note that there is no straightforward inference to be drawn from disability’s correlation with reduced lifespan to disability’s having an adverse effect on well-being.
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» Disability and Health
» The Impact of Disability on Well-Being: What is at Stake?
» Disability: Health, Well-Being, and Personal Relationships
» Death or Disability?: The 'Carmentis Machine' and Decision-making for Critically Ill Children

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