APA NEWSLETTER | PHILOSOPHY AND MEDICINE Weithorn, Lois, and Susan B. Campbell. “The Competency of Children and Adolescents to Make Informed Treatment Decisions.” Child Development 53, no. 4 (1982): 1589–98. Disability and Well-Being: Appreciating the Complications Stephen M. Campbell BENTLEY UNIVERSIT Y Joseph A. Stramondo S AN DIEGO STATE UNIVERSIT Y Being disabled is widely thought to be a bad thing for the one who is disabled. In fact, this view is so widely held that we may call it the Standard View of the relationship between disability and well-being.1 The purpose of this essay, which draws upon our more comprehensive treatment of this topic,2, is to highlight some reasons why the Standard View about disability and well-being is false, and why (with certain exceptions) it is difficult to make true generalizations about disability’s impact on well-being. Two terminological clarifications. First, we are not committing ourselves to any particular definition or model of disability. Instead, we use the term “disability” to pick out conditions that are commonly given that label.3 Paradigmatic examples include Down syndrome, cerebral palsy, achondroplasia, spina bifida, autism, blindness, deafness, paraplegia, and quadriplegia. With this terminological strategy, it is an interesting open question what the relationship between disability and well-being is since there is no valuation built into the definition. Second, whereas psychologists typically use the term “well-being” to refer to a purely psychological phenomenon, we are using that term, as philosophers standardly do, to refer to how well or poorly a person is doing or faring, or how well or poorly one’s life is going for her. Well-being in this sense is conceptually related to a range of other notions: benefit and harm, what is good or bad for an individual, self-interest, prudential value, one’s best interests, one’s good, flourishing, and the good life. Well-being, as it is being used here, is a normative (as opposed to descriptive or empirical) notion, and there is room for normative debate about what exactly well-being and the good life consist in. For our purposes, we will assume that such things as happiness, rewarding relationships, achievement, and knowledge are among the “goods of life.” We remain neutral, however, on whether there is some deeper unifying explanation as to why these things are good for us. 1. THREE FACTS ABOUT DISABILITY To set the stage for our critique of the Standard View, let us consider three facts about disability: (1) the variation across disability categories, (2) the variation within disability categories, and (3) the high impact nature of disabilities. experiences the world (e.g., through the absence or diminution of a sensory capacity or through its impact on cognition), whereas others have a more indirect impact. Some disabilities can be without any cost or inconvenience in the right kind of environment, whereas others involve features (such as chronic pain and early death) that seem costly independently of one’s environment. Some disabilities are “visible” in the sense that their presence is often easily apparent to external observers; others are “invisible” and might be difficult or even impossible for an observer to detect without the disabled person identifying themselves as such. Different disabilities have a tendency to evoke different forms of response from others (including pity, amusement, surprise, disgust, admiration, compassion, envy, etc.). Particular disabilities differi n terms of the size and characteristics of the population that has that condition and the extent to which those individuals constitute a community. In short, there is a host of differences among the different kinds of disability. Turning to the second fact, there is also great variation within most disability categories. Even when two individuals are said to have the same disability, there can be all sorts of variation in the nature of their conditions and in their experience of that disability. Imagine two deaf individuals. One has been fully deaf from birth, was raised in a household and community where ASL was the primary first language, knows how to successfully navigate her environment, enjoys a range of pleasurable pastimes (that are sometimes enmeshed in Deaf culture), and is secure in her identity as a Deaf person. The other person lost his hearing abilities late in life due to a workrelated accident, is surrounded by people who are unsure how best to communicate with him and often deal with this by limiting their interactions with him, has trouble navigating his environment, regrets no longer getting to listen to music, and thinks of his condition as a very serious malady. Here we have instances of the same disability that differ along several significant dimensions. Finally, there is what we will call the “high impact” nature of disabilities. High impact traits are traits that have a significant causal impact on how an individual’s life unfolds. To illustrate this idea, it helps to consider the contrasting notion of a “low impact” trait. Take hitchhiker’s thumb, the ability to bend the top portion of one’s thumb back at an angle approaching ninety degrees. It is safe to say that, for most people who have this ability, it has played no major role in the direction that their lives have taken. Had they lacked this ability, their lives would have unfolded in more or less the same way. In contrast, the conditions that we come to label “disabilities” are almost always on the high-impact end of the spectrum. Blindness, paraplegia, achondroplasia, Down syndrome, cerebral palsy—these conditions tend to have a colossal impact on the direction that one’s life takes. They can have a significant influence on a person’s day-to-day activities, her choice of employment, the nature of her interactions with family, friends, and strangers, her goals and aspirations, and even her sense of identity and the phenomenology of her everyday life. The first fact is that there is great variation across the different types of conditions that we label “disabilities.” Some disabilities have a direct impact on how a person FALL 2016 | VOLUME 16 | NUMBER 1 PAGE 35 APA NEWSLETTER | PHILOSOPHY AND MEDICINE 2. EXPL AINING DISABILITY’S VARIED IMPACT ON WELL-BEING might be debated), there is clearly a rich diversity of ways that the trait can be realized in a life. The three facts about disability help to explain why simple generalizations about disability and a person’s overall wellbeing cannot be made. We can begin with high-impact traits. Consider this case: These considerations help to explain why we cannot make simple generalizations about the relationship about wellbeing and disability in general. Furthermore, the highimpact nature of disabilities and the variation that exists within disability categories helps to explain why we often cannot even generalize about what role a particular disability has on the well-being of those with that condition. Imagine a set of identical triplets, sisters with paraplegia who use wheelchairs and who live in different cities. The sisters have a great deal in common. They are of a similar temperament, have had similar life-experiences, and share common values. Furthermore, each lives in an accessible building and enjoys accessible public transportation. Despite these similarities, the sisters’ lives diverge radically. The first sister attends a social gathering for people with paraplegia where she meets and eventually marries a woman who becomes the love of her life and her best friend. They live happily into their old age. The second sister attends a similar social meeting and falls head over heels for a woman who turns out to be physically and emotionally abusive. This leads to years of suffering, an eventual divorce, and deep regrets. The third sister is traveling to the same type of social gathering, but her taxi gets hit by a bus and she dies instantly.4 As this case illustrates, even if a group of disabled individuals were to have very similar disabilities, social environments, temperaments, values, and so forth, we can easily imagine ways in which their disabilities, in combination with the intricate contingencies of life, can take their lives in very different directions, resulting in very different patterns of well-being. (Notice that we would not expect a low-impact trait like hitchhiker’s thumb to have that sort of effect.) But the intricate contingencies of life are only one type of difference in people’s lives. People vary in their temperaments, likes and dislikes, values, beliefs, jobs, projects, etc., and live in a range of different kinds of physical and social environments. When you combine a high-impact trait like a disability with variations in individuals’ life-circumstances, this leads to further variations in life-circumstances and, often enough, variations in well-being. This point applies even if we focus our attention on individuals with more or less the same high-impact trait.5 Of course, more often than not, disabled people do not have the same high-impact trait. Our first fact about disability—the variation that exists across disability categories—reveals that “disability” encompasses a wide range of different types of high-impact traits. Since a single type of high-impact trait can yield great differences in wellbeing in different circumstances, it should come as no surprise that the presence of different high-impact traits will have an even greater tendency to produce divergence in well-being. Our second fact about disability highlights important differences in how a single type of disability can manifest itself in the lives of different individuals. If such individuals possess the same high-impact trait (a point that PAGE 36 3. INTRINSIC, INSTRUMENTAL, AND COMPARATIVE VALUE To this point, we have been referring somewhat vaguely to individuals’ overall well-being. Let us now get more precise. The Standard View states that, in the vast majority of cases, having a disability is bad for those who are disabled—or, in other words, having a disability negatively impacts the well-being of those who are disabled. This view is open to three noteworthy interpretations. First, the Standard View might be interpreted as saying that disabilities tend to be intrinsically bad for a person—that is, bad in and of itself, apart from its causal consequences. Second, the claim might be that having a disability tends to be instrumentally bad for a person. Something is instrumentally bad for a person when it leads to things intrinsically bad for her and/or prevents the occurrence of things intrinsically good for her.6 Third, the Standard View might be understood as saying that having a disability tends to be comparatively bad for a person—that is, it renders a person worse off than they would have been in the absence of that disability. The comparison in “comparatively bad” is between one’s actual level of well-being and one’s well-being level in a counterfactual scenario. With this trifold distinction in view, we are now in a position to specify our suggestion that we cannot make simple generalizations about the impact of disability on well-being. What we cannot do is make true simple generalizations about the instrumental or comparative goodness, badness, or neutrality of disability.7 The high-impact nature of disabilities pertains to their causal influence on a person’s life. Instrumental and comparative value are the modes of prudential value that are intimately bound up with causation. Because disabilities are high-impact traits and people’s lives vary along countless dimensions, we cannot make simple generalizations about the causal impact of disabilities on people’s lives and well-being. Given the diversity of disabilities and the fact that most of them are compatible with achieving many of the goods of life, we also cannot make simple generalizations that disability tends to be instrumentally or comparatively good, bad, or neutral for a person.8 We should therefore reject the Standard View on the instrumental and comparative interpretations. Intrinsic prudential value is a different story. The highimpact nature of disabilities has less relevance to the question of whether disabilities are intrinsically bad, good, or neutral for people. For here we are concerned not with a disability’s causal consequences, but with how the disability itself—apart from its effects—impacts well-being. While it is not possible to provide a full defense here, our view is FALL 2016 | VOLUME 16 | NUMBER 1 APA NEWSLETTER | PHILOSOPHY AND MEDICINE that, despite the wide variation across and within disability categories, most disabilities are neither intrinsically good nor intrinsically bad for an individual. With some possible exceptions,9 they are intrinsically neutral. This should not be a very controversial claim in light of the fact that the leading theories of well-being (hedonism, desire-fulfillment theory, perfectionism, and objective list theory), which purport to tell us what things are intrinsically and basically good or bad for us, do not identify disabilities as being intrinsically good or bad for us.10 So, the Standard View is false on the intrinsic interpretation as well. 4. CONCLUSION The Standard View tells us that being disabled tends to be a bad for a person. We have offered a partial explanation of why we cannot make true generalizations about disability’s instrumental or comparative goodness, badness, or neutrality. This gives us reason to reject the Standard View on the instrumental and comparative interpretations. The intrinsic interpretation of the Standard View should also be rejected, though not because it is impossible to make a true generalization about the intrinsic value of disability. The reason is simply that it is far more plausible that most disabilities are intrinsically neutral. Beyond that claim, we should resist the temptation to make broad and simple generalizations about the relationship between disability and well-being. 8. The so-called “Non-Identity Problem” introduces further reasons why it is difficult to generalize about disability’s comparative value, though this issue is beyond the scope of this essay. 9. Some disabilities may essentially involve features that are, arguably, intrinsically good or bad for a person. Examples may include fibromyalgia or major depression. 10. For more discussion of this point, see Campbell and Stramondo, “The Complicated Relationship of Disability and Well-Being.” REFERENCES Amundson, Ron. “Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics.” In Quality of Life and Human Difference, edited by David Wasserman, Jerome Bickenbach, and Robert Wachbroit, 101–24. Cambridge: Cambridge University Press, 2005. Barnes, Elizabeth. “Valuing Disability, Causing Disability.” Ethics 125 (2014): 88–113. Campbell, Stephen M. and Joseph A. Stramondo. “The Complicated Relationship of Disability and Well-Being.” Kennedy Institute of Ethics Journal, forthcoming, 2017. Toward a Critical Theory of Harm: Ableism, Normativity, and Transability (BIID) Joel Michael Reynolds EMORY UNIVERSIT Y NOTES 1. Ron Amundson, “Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics,” 103. 2. See Stephen M. Campbell and Joseph A. Stramondo, “The Complicated Relationship of Disability and Well-Being,” which is forthcoming in a special issue of Kennedy Institute of Ethics Journal. In that essay, we offer a systematic and detailed critique of the Standard View, discuss a probabilistic variant of the Standard View, and examine some practical implications of our conclusions about the relationship between disability and wellbeing. 3. Here we follow Barnes, “Valuing Disability, Causing Disability.” 4. This is a variation of an example presented in Amundson, “Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics,” 109. 5. Granted, it is possible to have a high-impact trait whose effects are so harmful (e.g., causing agony and an early death) that it will consistently ruin the life of anyone who has it. Those can be cases where a high-impact trait and variations needn’t yield great variation in well-being. However, a modest amount of empirical observation reveals that most disabilities are not like that. They are compatible with achieving many of the things widely regarded to be the goods of life, and there are countless cases in which individuals with disabilities have lives that would be regarded prudentially good on any remotely plausible view of well-being. 6. 7. To qualify as overall instrumentally bad for a person, a thing must involve a greater balance of instrumental harm (leads to intrinsic bads, prevents intrinsic goods) over instrumental benefit (leads to intrinsic goods, prevents intrinsic bads). A similar qualification applies to intrinsic badness. A clarification about our use of “neutral.” In the context of discussing well-being, this term is most naturally taken to refer to the space between prudential goodness (what is good for a person) and prudential badness (what is bad for a person). To say that a trait is neutral in this sense is to say that it is either (i) neither good nor bad for a person, or (ii) good and bad for the person to roughly the same extent. This is how we will understand and use the term “neutral.” FALL 2016 | VOLUME 16 | NUMBER 1 ABSTRACT Body Integrity Identity Disorder (BIID) is a very rare condition describing those with an intense desire or need to move from a state of ability to relative impairment, typically through the amputation of one or more limbs. In this paper, I draw upon research in critical disability studies and philosophy of disability to critique arguments based upon the principle of nonmaleficence against such surgery. I demonstrate how the action-relative concept of harm in such arguments relies upon suspect notions of biological and statistical normality, and I contend that each fail to provide normative guidance. I then propose a critical theory of harm, one marked by substantive engagement with both empirical and reflective inquiry across the sciences, social sciences, and humanities. I conclude by discussing implications of a critical theory of harm and how it might enrich ongoing debates in bioethics, philosophy of disability, and the health humanities more broadly. KEYWORDS Harm, BIID, Transability, Ableism, Disability, Philosophy of Disability, Bioethics Unless we can put ourselves in the place of another, unless we can enlarge our own perspective through an imaginative encounter with the experience of others, unless we can let our own values and ideals be called into question from various points of view, we cannot be morally sensitive. –Mark Johnson1 PAGE 37 NEWSLETTER | The American Philosophical Association Philosophy and Medicine FALL 2016 VOLUME 16 | NUMBER 1 FROM THE EDITORS Mary Rorty and Mark Sheldon SUBMISSION GUIDELINES Justin Bernstein Mandatory Vaccination: A Response to a Libertarian Defense John R. McConnell III Postcandelic Felicia Nimue Ackerman ARTICLES John R. McConnell III Aristotle’s De Anima and Modern Biology: Both Irresolute on the Nature of Viruses The Elbow Speaks Michael Boylan Using Fiction to Help Teach Ethics in Medical Ethics Classes Stephen Satris Wittgenstein and the Language of Abortion Michael Brodrick Moral Relativism and Medical Decisions Rosalind Ekman Ladd Children’s Rights and The Fault in Our Stars Stephen M. Campbell and Joseph A. Stramondo Sarah Bianchi Disability and Well-Being: Appreciating the Complications Everything Has Its Price: The Question Is Where to Draw the Line. A Kantian Approach to Human Gene Editing Joel Michael Reynolds Deborah R. Barnbaum and Ryan Comeau Revisiting the Voluntary, Nonvoluntary, and Involuntary Euthanasia Distinction Bertha Alvarez Manninen Balancing Parental Autonomy and Harm to Others in the Wake of the Modern AntiVaccination Movement VOLUME 16 | NUMBER 1 © 2016 BY THE A MERIC AN PHILOSOPHIC AL A SSOCIATION Toward a Critical Theory of Harm: Ableism, Normativity, and Transability (BIID) Lauren Guilmette Curiosity-as-Care: Feminist Philosophies of Disability, Foucault, and the Ethics of Curiosity Jennifer Scuro The Ableist Affections of a Neoliberal Politics FALL 2016 ISSN 2155-9708