Bodies on the Margins: A Multitude of Voices

Kevin Timpe Reviews Elizabeth Barnes’ The Minority Body: A Theory of Disability

Elizabeth Barnes. The Minority Body: A Theory of Disability. Oxford University Press: 2016 pp.160. $45

Few of us like to anticipate what it would be like to have a disability. But we should, considering the U.S. Census Bureau reports that approximately 19% of the country’s population has one. This, along with the Social Security’s estimate that over one quarter of 20-year-olds will become disabled before the age of retirement, suggests a high chance that either ourselves or a loved one will one day face such a reality. Thus, in light of these and other similar statistics, we have good reason to consider what it would mean to live with a disability. Yet this may not be a well-received recommendation, likely because many of us try to avoid thinking about this possibility—perhaps we think our lives would be worse off in some way if we were to become disabled. Indeed, it is common, especially for individuals with little significant interaction with individuals with disabilities, to think just this–that being disabled makes one worse off or less happy simply in virtue of having that fact. That is, having a disability is, in Elizabeth Barnes’ terminology, a “bad-making difference.”

Since the 1970s, individuals with disabilities, advocates within the disability rights movement, and disability studies scholars have pushed back against this mistaken assumption of the “badness” of disability. Stuart Sharipo’s No Pity: People with Disabilities Forging a New Civil Rights Movement, for example, provides an excellent treatment of the history of the disability rights movement in the United States, one which asserts that “this simple but iconoclastic thinking—that a disability, of itself, is not tragic or pitiable—is at the core of the new disability rights movement.” Indeed, Shapiro’s engaging exploration aims to show that it’s often how people respond to disabilities, and not the disabilities themselves, that are problematic.

Among the many important moments in the history of disability rights advocacy that he covers, Shapiro draws the reader’s attention to a 1981 New York Times opinion by Evan Kemp, Jr., who would go on to help shape the Americans with Disabilities Act as chairperson of the Equal Employment Opportunity Commission. In this letter, Kemp explains that the association of disability with badness encourages people to “consider the disabled to be childlike, helpless, hopeless, nonfunctioning and noncontributing members of society.” We tend to pity and fear, to treat as helpless and hopeless, to infantilize individuals in light of their disabilities. But insofar as these attitudes are often unwarranted, it is our response to them and not the disabilities themselves that harm and marginalize the individuals in question. “Playing to pity may raise money,” Kemp writes, “but it also raises walls of fear between the public and us.”

Yet it would be wrong to think that Shapiro or Kemp speak for all individuals with disabilities. As Shapiro says, “no one leader or organization can claim to speak for all disabled people.” To understand what it’s like to be disabled—indeed to understand what disability is—we need a multitude of voices.

Contributing to that multitude of voices is Elizabeth Barnes, a professor of philosophy at the University of Virginia, whose recent book, The Minority Body: A Theory of Disability is a welcome addition to the growing corpus of careful and sensitive philosophical reflections on disability. At a recent conference session dedicated to the book, Barnes described it as a “love letter to philosophy,” a field which has not always been especially friendly towards individuals with disabilities. Aristotle’s On the Generation and Corruption of Animals infamously describes individuals with disabilities as monstrosities, and his Politics claims there should “be a law that no deformed child shall live.” Aristotle suggests that even if a particular polis has banned the practice of leaving of disabled children to die from exposure to the elements, the community might still wish to consider aborting fetuses likely to have a disability in order to minimize the number of disabled children who are ultimately born.

And this is often what happens, even today. Consider, for instance, prenatal testing for Down Syndrome. One often sees the claim that 90% of prenatal diagnoses of Down Syndrome in the United States are aborted. There is reason, however, to think that number is inaccurate. According to a recent review of twenty-four studies, the mean termination rate is lower, but still rather shocking at 67%. More recently, philosophers such as Peter Singer and Jeff MacMahan are well known for arguing that we have higher moral obligation to non-human animals than we do to severely disabled infants.  Singer, for instance, denies that all humans have the same moral value. He instead thinks that an individual’s moral status depends (in part) on their cognitive ability, and not whether they are human or belong to another animal species. In a paper entitled “Speciesism and Moral Status,” Singer thinks it’s obvious that many nonhuman animals are significantly more cognitively advanced than some human beings. And from this he argues that “the view that all human beings, irrespective of their cognitive abilities, have equal moral status, and that this status is superior to the moral status of the most intelligent nonhuman animals … cannot be defended.”

Reflecting on disability, Barnes writes in the preface, “is personal.” Barnes herself has a disability. In a blog post she wrote while finishing the book, Barnes elaborates:

I have sat in philosophy seminars where it was asserted that I should be left to die on a desert island if the choice was between saving me and saving an arbitrary non-disabled person. I have been told it would be wrong for me to have my biological children because of my disability. I have been told that, while it is not bad for me to exist, it would’ve been better if my mother could’ve had a non-disabled child instead. I’ve even been told that it would’ve been better, had she known, for my mother to have an abortion and try again in hopes of conceiving a non-disabled child. I have been told that it is obvious that my life is less valuable when compared to the lives of arbitrary non-disabled people. And these things weren’t said as the conclusions of careful, extended argument. They were casual assertions. They were the kind of thing you skip over without pause because it’s the uncontroversial part of your talk.

For a long time, Barnes’ disability kept her from writing on disability, focusing her philosophical energy instead on vagueness and feminist metaphysics. She writes in the book’s preface:

I used to think I couldn’t philosophize about disability precisely because the topic is so personal.” But this, she thinks, is absurd, since all of us are personally invested in the topic of disability, whether we realize it or not. The last time I checked, most non-disabled people are pretty personally invested in being non-disabled…. When it comes to disability, I’m not objective. And neither are you. And that’s true whether you’re disabled or (temporarily) non-disabled.

Barnes points to the work of fellow feminist philosopher Sally Haslanger as helping her see that philosophy can be—and sometimes should be—personal, invested. From Haslanger, she learned (at least) two crucial lessons “that it’s possible to do excellent philosophy on topics in which you’re personally invested … [and that] philosophy needs the voices of those who are personally invested.”

Barnes’ The Minority Body itself beautifully illustrates both of these lessons.

While there is a plethora of existing philosophical work on disability, most of it focuses on issues in bioethics or the justice of resource allocation. These discussions, however, presuppose a view about what disability is. In The Minority Body, however, Barnes’s broad objective is to address the gap between how disability rights activists think of disability versus the ways in which our general culture, much of professional philosophy included, thinks of the same. But her suggested view is at odds with that which is often assumed.

The previous paragraph, though, is a little loose—Barnes is not trying to give an account of disability in general. She makes it clear in the introduction that her book is only about physical disability. She’s well aware of other sorts and acknowledges the need for philosophical reflection on them— but those non-physical disabilities aren’t her focus. Why this restriction? Barnes gives two main reasons, the first of which is simplicity: “The task of saying what (if anything) disability is, or what its connection to wellbeing is, gets complicated enough given the heterogeneity of things we classify as physical disability.” Barnes’ approach is ‘ground-up’ in this respect rather than ‘top-down’. She thinks we should work from paradigmatic instances of disability toward an account of what disability generally is, rather than privileging an account of what disability is that may not accurately reflect the experiences of those that have the range of disabilities that the account is supposed to include. Barnes is supportive of others who work up from different ground– that want to focus on other disabilities:

I don’t think we should infer that there is a unified category—or a unified connection to wellbeing—covering psychological, physical, and cognitive forms of disability simply because our word ‘disability’ can refer to physical, cognitive, or psychological disability. Modifiers like ‘physically’, ‘mentally’, ‘psychologically’, etc. can do a lot of work.

That said, Barnes is not committed to the claim that there is not a unified category of disability. Rather, in her view, the mere fact that we use the word “disability” with this range of modifiers doesn’t show that there is. For Barnes, “the best way to approach the question of whether and to what extent different types of disability form a common kind … is by first engaging in detailed analysis of the different varieties of disability and then exploring the potential commonalities.” Furthermore, she encourages us to keep in mind that there is great variation within each kind of disability. Not all physical disability has a particular feature in common, and some physical disabilities may be more similar to, say, a psychological disability, than they are to other physical disabilities. These points are extremely important to keep in mind, in part because I have concerns that Barnes’s argument for why physical disability involved mere-difference rather than bad-difference will not be true of other kinds of disabilities.

The second reason for Barnes’s focus on physical disability has to do with her reliance on the epistemology of testimony. As she writes, “psychological and cognitive disabilities raise complicated issues for the reliability of testimony that simply aren’t present in the case of physical disability.” In her own work, Miami University disability scholar Cynthia Lewiecki-Wilson argues that most of the gains that disability studies have helped bring about have failed to accrue to those with severe cognitive or psychiatric disabilities. This is, again in part, because such testimony is easier to obtain and, for many, easier to take seriously, coming from individuals with specifically physical disabilities. Thus, though she does not undertake it in Minority Body, we there is reason for other scholars to do the kind of careful work Barnes is doing for physical disability but with a focus on cognitive, emotional, and other kinds of disabilities.

Philosophy, especially the approach to philosophy that is referred to as “analytic,” is not known for being approachable for a wide audience. Indeed, much of it can be very technical and involve explicit logic in a way that those outside the discipline can find difficult. The majority of The Minority Body, though, will be approachable even to those not familiar with analytic philosophy: Barnes moves slowly through the arguments and draws important comparisons between, for example, gender and sexual orientation that help illustrate her claims. (Nota bene: Parts of chapters two and three, where she carefully develops and clarifies her own view about the nature of disability, are the most technical of the book. I have some concerns with her account in these chapters, but expressing exactly what they are would require a level of detail that would be out of place in this review.) For the most part, the book can be approached and appreciated without substantive background in philosophy or disability studies, and the broad strokes of Barnes’ value-neutral model of disability can be distilled from the rest of the text.

While her argument that all physical disabilities are such that they are mere-difference is debatable, the overarching argument that at least some disabilities are mere-differences rather than bad-differences is both compelling and welcome.

Kevin Timpe is currently the William H. Jellema Chair of Christian Philosophy at Calvin College. He works primarily on the metaphysics of free will, philosophy of religion, virtue ethics, and philosophy of disability.

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