Valuing disability, Causing Disability

Ethics

Volumn 125, Issue 1, 2014, Pages 88-113

  Barnes, Elizabeth ^a  

^a UNIVERSITY OF VIRGINIA   (United States)

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EID: 84919721413     PISSN: 00141704     EISSN: None     Source Type: Journal    
DOI: 10.1086/677021     Document Type: Article

References (42)

1. If you accept a terminological distinction between “disability” and “impairment,” with “disability” referring to the socially mediated effects of impairments, then you should reinterpret what follows as talk of causing impairments.
2. Elizabeth Barnes, The Minority Body (Oxford: Oxford University Press, forthcoming.).
3. Furthermore, it doesn’t seem like the mere-difference view can only allow that disabilities involve the absence of some intrinsic goods if the lack of those goods is somehow “compensated for” by other, disability-specific goods. Consider a different case. We might think that the ability to be pregnant and give birth—to grow a new person in your own body—is an intrinsic good, at least insofar asany ability isan intrinsic good. People who are biologically male lack this ability. Nor is there any obvious man-specific ability we can point to which compensates men for this lack. But we don’t tend to think that people who are biologically male are automatically worse off than people who are biologically female, simply because they lack an ability we might count as an intrinsic good.
4. Again, just because they often do support this characterization of the bad-difference view doesn’t mean that they have to. Nor is commitment to a mere-difference view in any way commitment to a rejection of objective list theories of well-being. It’s perfectly consistent for an objective list view of well-being to simply leave out nondisability from their list of things which are objectively good for you. Likewise, it’s perfectly consistent for them to maintain that disability always incurs a loss of some objective good but can also create opportunities for experiencing other, different objective goods.
5. For those not happy with (ii), some of these issues with (iii) could be addressed by adding everyone’s favorite counterexample avoider: a ceteris paribus clause.
6. Jeff McMahan, “Causing Disabled People to Exist and Causing People to Be Disabled,” Ethics 116 (2005): 77–99.
7. John Harris, “One Principle and Three Fallacies of Disability Studies,” Journal of Medical Ethics 27 (2001): 383–87.
8. Guy Kahane, “Non-identity, Self-Defeat, and Attitudes to Future Children,” Philosophical Studies 145 (2009): 193–214.
9. Peter Singer, “Ethics and Disability: A Response to Koch,” Journal of Disability Policy Studies 16 (2001): 130–33.
10. Allan Buchanan, Dan W. Brock, Norman Daniels, and Daniel Winkler, From Chance to Choice: Genetics and Justice (Cambridge: Cambridge University Press, 2000).
11. It is worth pointing out that this is the same for removing disability: many people adapt well to the removal of disability, but not everyone does. Jonathan Glover discusses the case of S.B., a man who had been blind from infancy but then had his vision restored by a surgical procedure. S.B. fell into a deep depression after his blindness was removed and died less than two years after his operation.
12. Jonathan Glover, Choosing Children (Oxford: Oxford University Press, 2006), 19–23.
13. Similar points will allow the mere-difference view to uphold the idea that becoming disabled is a misfortune and a harm, even if being disabled is—by itself—neither.
14. McMahan, “Causing Disabled People to Exist and Causing People to Be Disabled.”.
15. In the looser sense of “identity” (traits that determine self-conception) rather than in the stricter sense of “identity” (traits that determine numerical identity).
16. If this is the case, then to make the analogy to gayness or femaleness the mere-difference view would need to maintain that disability is similarly identity determining. But this tends to be what advocates of the mere-difference view think in any case.
17. S. D. Edwards, “Disability, Identity, and the ‘Expressivist’ Objection,” Journal of Medical Ethics 30 (2004): 418–20.
18. Elizabeth Harman, “‘I’ll Be Glad I Did It’ Reasoning and the Significance of Future Desires,” Philosophical Perspectives: Ethics 23 (2009): 177–99.
19. This line of argument is explored—for the case of “procreative beneficence”.
20. Guy Kahane and Julian Savulescu, “The Moral Obligation to Create Children with the Best Chance of the Best Life,” Bioethics 23 (2009): 274–90.
21. Note that in pointing out the comparative risks of blindness and sightedness, the advocate of the mere-difference view doesn’t tacitly endorse the idea that it is better to be sighted. The greater risk to well-being associated with blindness could be largely or entirely due to how we treat blind people.
22. The most telling evidence for this is the suicide rate among gay teens. A recent meta-analysis of nineteen studies of suicide in gay teens showed that gay teens are three times more likely than heterosexual teens to report a history of suicidal thoughts, plans, or intent.
23. Mark Moran, “Data Sounds Alarm on Gay Teens’ Heightened Suicide Risk,” Psychiatric News 46 (2011): 9–28.
24. I realize it might not strike everyone as homophobic. For those who disagree, the main point is simply this: the permissibility of the two cases—Reverse Disabled Baby and Reverse Baby Genes—should stand or fall together. If you’re happy to grant that both cases are permissible, then it will be easy for you to allow that there is a cause/remove discrepancy for disability.
25. It is not obvious why it wouldn’t, or why the case is importantly different from that of sexuality. Many disability rights activists argue that cases like Reverse Disabled Baby are exactly the sorts of cases that communicate ableism.
26. Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (London: Verso Books, 1995).
27. The effects of social ostracism on persons with visible disabilities is often profound. There’s a vast literature on the topic, but one of the most telling examples is the effect of service dogs for people in wheelchairs. Service dogs perform many helpful assistive tasks, but their owners often report that the most substantial effect of the dog’s presence is a mediation of social exclusion. Research shows that strangers will smile or speak to a person in a wheelchair if that person is accompanied by a dog, whereas wheelchair users standardly receive little or no social acknowledgment (eye contact, smiles, etc.).
28. Bonnie Mader and Lynnette Hart, “Social Acknowledgement for Children with Disabilities: The Effect of Service Dogs,” Child Development 60 (1989): 1529–34.
29. Lynette Hart, Benjamin Hart, and Bonita Bergin, “Socializing Effects of Service Dogs for People with Disabilities,” Anthrozoos 1 (1987): 41–44.
30. For example: according to the 2011 World Health Organization Report on Disability, disabled people are more than three times more likely than their nondisabled peers to report lack of access to health care; in “developed” countries the employment rate for disabled people is 44 percent (compared to around 75 percent for nondisabled people); disabled children are significantly more likely than nondisabled children to drop out of school (http://www.who.int/disabilities/world_report/2011/report/en/index.html).
31. It might also, of course, vary from disability to disability.
32. The fascinating BBC documentary Me, My Sex, and I profiles some of these pro-intersex campaigners.
33. H. F. L. Meyer-Bahlburg, C. J. Migeon, G. D. Berkovitz, J. P. Gearhart, C. Dolezal, and A. B. Wisniewski, “Attitudes of Adult 46, XY Intersex Persons to Clinical Management Policies,” Journal of Urology 171 (2004): 1615–19.
34. But wait—haven’t I been appealing to intuition (especially certain “noninterference” intuitions)? Yes, I have. But I haven’t been appealing to intuition about disability. The argument structure has gone like this: (i) if the mere-difference view is correct, then disability is analogous to features like sexuality and gender; (ii) think about how we reason (sometimes based on intuition) about cases involving sexuality and gender; (iii) absent further argument to the contrary, if the mere-difference view is correct then it predicts that we should reason about disability in similar ways. Much of what the mere-difference view says about disability is counterintuitive—and intentionally so. But the upshot is not skepticism about moral intuition. It is instead the admission that moral intuition can be affected by prejudice and false belief and that in cases where we have good reason to think our intuitions are unreliable, we should look for principled ways of revising and reconsidering that aren’t based purely on intuitions.
35. It would be a mistake, furthermore, to think that the only potential good effects of blindness come from the (well-documented) sensory uniqueness of the blind. For example, blind storyteller and disability awareness campaigner Kim Kilpatrick runs a blog called “Great Things about Being Blind!”, where she documents positive everyday experiences associated with her blindness. Her list includes: not being able to judge people based on what they look like, having no sense of self-consciousness about personal appearance and no temptation to “check the mirror,” a love of and facility with Braille, and the deep, profound relationship she has formed with her guide dog (http://kimgia3.blogspot.com). Consider also the Mission Statement from the National Federation of the Blind: “The mission of the National Federation of the Blind is to achieve widespread emotional acceptance and intellectual understanding that the real problem of blindness is not the loss of eyesight but the misconceptions and lack of information which exist” (https://nfb.org/mission-statement).
36. Derek Parfit, Reasons and Persons (Oxford: Clarendon, 1984).
37. Another famous case discussed at length in the literature is that of embryo selection in in vitro fertilization and the permissibility of selecting for disability. I’m not going to discuss this case, simply because I think the ethics of embryo selection introduce a lot of noise and might well include complications that cut across the issue of whether we can permissibly cause disability. At the very least, it is important to note that there is clearly no obvious entailment from a mere-difference view of x to the permissibility of selecting for x. Most people think there’s no moral difference between being female and being male. And yet many people are uncomfortable with the idea of sex-based embryo selection. The permissibility of sex-based embryo selection isn’t settled simply by the fact that it is no better or worse to be male than to be female, and vice versa.
38. David Wasserman, “Ethical Constraints on Allowing or Causing the Existence of People with Disabilities,” in Disability and Disadvantage, ed. Kimberley Brownlee and Adam Cureton (Oxford: Oxford University Press, 2009), 319–51.
39. Wasserman, however, bases his case on the role morality of prospective parents and the “ideal of unconditional welcome.” I’m sympathetic to much of what Wasserman says, but I make no positive claims here about role morality. My claim is much simpler: the defender of a mere-difference view of disability should reject the background assumptions of cases like Child Now.
40. McMahan, “Causing Disabled PeopletoExist and Causing PeopletoBeDisabled,”90.
41. It is very difficult, of course, for most people to imagine anyone wanting to be disabled (or more strongly—wanting to become disabled). But most people associate disability merely with lack of ability. In a society with less ableism, it would be the case not only that many of the bad effects of disability would be lessened but also that many of the good effects of disability would be more widely recognized.
42. Laura Hershey, “From Poster Child to Protestor,” Spectacle (1997), http://www.cripcommentary.com/frompost.html.