Professor Elizabeth Barnes has produced a tightly and carefully reasoned philosophical examination of the significance of disability. It provides a clear defense of certain core principles of the disability rights movement in contrast to the many professional philosophers (those which I will term ‘mainstream bioethicists’) who consider that movement to be ill-conceived. An example of this tradition can be seen in the volume From Choice to Chance: Genetics and Justice, coauthored by four of the most prominent bioethicists of the turn of the century (Buchanan, Brock, Daniels, & Wikler 2000). (For discussion see Amundson & Tresky 2007, 2008.) I confess to the prejudice implied by my label of ‘mainstream bioethicists’ as those beset by the prejudice of ableism. The late Adrienne Asch considered herself a mainstream bioethicist even though her progressive views of disability were rare among her colleagues.
Disability rights is a serious civil rights movement, equal in significance to gay rights, feminism, resistance against discrimination on the basis of ‘race,’ and a number of other such movements. Just as earlier generations of philosophers assumed the legitimacy of the social prejudices of their own times, mainstream bioethicists have assumed the correctness of prevailing assumptions about disability. In this tradition, disabilities are conceptualized as inimical to well-being, they essentially involve suffering, and any civic ameliorations of the problems of disability are seen to result only in slight improvements to the essentially low quality of a disabled life. Barnes argues the contrary. Disabilities should be conceived as mere differences, not bad differences. Her neutral model of disability comports with a great deal of testimony from disabled people themselves. But such testimony is vulnerable to principled dismissals from their philosophical critics (few of them disabled). Barnes proceeds to argue against those dismissals, concluding that they are cases of testimonial injustice. I will sketch aspects of these two conclusions: first her neutral model of disability, and second her defense of the contrary testimony of disabled individuals against dismissal.
The Value-Neutral Model. Barnes acknowledges that individual cases of disability often co-occur with lowered well-being. However she argues that it is a mistake to conclude that disability is itself the cause of lowered well-being. Arguments in favor of the conceptual linkage between disability and lowered life quality are common in the literature. For example: Disability is abnormal function, normal life opportunities require normal function, sub-normal life opportunities therefore imply reduced well-being, which proves that disability implies reduced well-being. (This argument is reconstructed from Buchanan et al. 2000.) How does Barnes refute this inference? She begins by distinguishing between local ‘bads’ and global ‘bads.’ Global bads are things that are bad for you on the whole, largely without respect to your situation. Local bads are bad for you only with respect to certain contexts or situations. This is nearly all she needs to reveal the value-neutrality of disability. Using a list of individual cases of ‘goods’ and ‘bads’ she shows (a) that many things that are highly valued by individuals also have serious ‘bads’ associated with them and (b) that many people who have significant disabilities also find important ‘goods’ associated with their disabling conditions. To weaken our assumptions of the bad-making properties of disabilities, Barnes cites some important examples of conditions that have recently been socially reclassified from ‘assumed to be bad-making’ to ‘assumed to be neutral.’ One of these is gayness. She reports gayness to be a neutral trait, even though it can surely be associated with very low well-being when it occurs in a social context that is heavily prejudiced against gayness. Our own society has only recently come to hold that gayness is a neutral trait. Not long ago, and certainly within my lifetime, gayness was classified as a psychiatric illness by medical authorities and deemed (by typical Americans) to cause very low well-being. We must notice that majority agreement with Barnes’s assessment that gayness is a neutral trait is not necessary for the strength of her argument. Even if her view about gayness (which I share) is not shared with the general public, it is surely shared among the majority of liberal, college educated Americans. (The recent election has shaken my confidence in guessing the opinions of my fellow countrypersons.) The important point is not that academics are correct in our views, but that we have changed our views with respect to gayness in recent decades. Barnes offers a corresponding argument with respect to biological sex, and claims that being a man is neutral with respect to well-being. This view was rejected not only by Aristotle, but by many others (predominantly men, the sex that dominates the historical record) well into the 20th century. (I was shaken by Barnes’s hypothetical discussion of how the lives of men might be assumed to be much lower in quality than those of women . I would have been more comfortable if she had stuck with social prejudices that matched my own.) Even if we liberals relinquish our claim to objective correctness, Barnes’s point stands. Earlier assumptions about how traits influence well-being have changed. The assumption about disability might change also. We must not assume the contrary, especially if evidence is against it.
Taking Their Word for It. What is the evidence that disability is neutral with respect to well-being? Some of it comes from questionnaires which clearly indicate that the average self-assessed well-being of disabled individuals is only slightly lower than that of non-disabled individuals. Published autobiographical reports often reflect similar valuation. One of Barnes’s many examples from this literature is Dostoevsky, who we learn had a serious form of epilepsy that strongly affected him throughout his adult life. Nevertheless, Dostoevsky valued his epilepsy highly because the special experiences that accompanied seizures, stating that “all you healthy people don’t even suspect what happiness is” (quoted in Barnes 2016, 109).
Nevertheless, mainstream bioethicists continue to believe that disabled people have a much lower level of well-being than nondisabled people. They do not change their opinions in the face of this apparent counterevidence. Instead they come up with reasons to dismiss the counterevidence. This is my second topic: Barnes’s discussion of the grounds on which mainstream bioethicists dismiss the disability-positive testimony of disabled people.
Disabled testimony is dismissed by likening it to cases like Stockholm Syndrome (in which hostages come to sympathize with their captors) or abused spouses who refuse to testify against their abusive partners out of a belief (that we presume to be irrational) that they are better off with the abuser than without him or her. The philosophical details of this problem are too complex to even summarize here, but Barnes does a fine job of explaining why dismissing the testimony of disabled people about their own well-being does not count as a liberation of victims from their delusions, as it would be for Stockholm Syndrome hostages or agreeable abused spouses. Instead it is an illegitimate dismissal of legitimate testimony. Barnes labels these dismissals as ‘testimonial injustice’ following philosopher Miranda Fricker (Fricker 2007). Disability studies authors (including your modest commentator) have rejected this kind of dismissal with similar purposes as Barnes. Unlike most other disability studies writers, Barnes has a close and detailed understanding of the theoretical background that underlies the dismissal. Her detailed discussion is welcome.
Overview. Barnes’s careful and concentrated philosophical discussions may not be attractive to some disability studies authors, who favor a more socially oriented approach to the problems of disability. She does little to position her writings in the context of other disability studies authors, except those that give autobiographical reports on their own well-being. A clearer acknowledgement of those relationships would have been useful. The book’s close philosophical focus will endear it neither to all disability rights advocates (it will seem curiously bloodless to some) nor, at first glance, to all philosophers (whose prejudices are being challenged). She reports that her entire book is aimed at providing a justification for the “disability pride” movement. I do not share that particular goal. It seems to me that the disability rights movement requires ‘pride’ only as a rhetorical flourish, as other ethnic movements have used it. But the arguments are especially valuable within the philosophical community. The neutral model of disability and other products of Barnes’s analysis are independently important. I was once told that one of my naïve efforts at explaining disability rights to philosophers was the first such published account (Amundson 1992). Since then the growth of interest in disability among philosophers has been impressive, though not overwhelming. It is time that close analytic attention was given to these problems, and Barnes’s book is a promising contribution.
University of Hawaii at Hilo
Hilo, HI, USA
Amundson, R. 1992. “Disability, handicap, and the environment.” Journal of Social Philosophy 23: 105-118.
Amundson, R., & Tresky, S. 2007. “On a bioethical challenge to disability rights.” Journal of Medicine and Philosophy 32: 541-561.
Amundson, R., & Tresky, S. 2008. “Bioethics and disability rights: conflicting values and perspectives.” Journal of Bioethical Inquiry 5: 111-123.
Buchanan, A. E., Brock, D. W., Daniels, N., & Wikler, D., eds. 2000. From chance to choice: genetics and justice. Cambridge: Cambridge University Press.
Fricker, M. Epistemic Injustice: power and the ethics of knowing. Oxford: Oxford University Press.