The Quality of Life is Not Strained:Disability, Human Nature, Well-Being, and Relationships
This paper explores the relationship between disability and quality of life and some of its implications for bioethics and healthcare. It focuses on the neglected perfectionist approach that ties well-being to the flourishing of human nature, which provides the strongest support for the common view of disability as a harm. After critiquing the traditional Aristotelian version of perfectionism, which excludes the disabled from flourishing by prioritizing rationalistic goods, I defend a new version that prioritizes the social capacities of human nature and the goods of personal relationship. This relationship-centered perfectionism is able to accommodate and explain disabled thriving. I also show how these issues have important implications for specific bioethical debates and clinical practices, using a cluster of issues related to Down syndrome as timely illustrations. My goal is to sketch a perfectionist theory that gives a more plausible account of the relationship between disability and well-being and that provides better practical guidance in cases involving judgments about the quality of disabled lives.
Jim, a resident of a L'Arche1 home in St. Louis, has Down syndrome and a variety of health ailments, which place restrictions on his independence, autonomy, and the range of activities open to him. Yet Jim loves his life because there are so many people he loves in it. He has more friends than he can count, and he receives invitations to so many events that he has trouble keeping his social calendar straight. He has regular chats with friends over coffee every morning, attends group water aerobics class every weekend, visits the nuns at his church every Sunday, and regularly invites friends to go out to eat. During parties and community gatherings, Jim can be seen going around the room shaking hands with [End Page 333] everyone in attendance. And when his paintings are on display at local art shows, he is mobbed by admirers of his work. Jim has the rare ability to light up a room and lift the spirits of everyone he comes into contact with. One would be hard pressed to find a happier person than Jim or to find many people who match his level of flourishing.
Jim does not have a problem, but he certainly poses a problem for the mainstream view of disability and quality of life among bioethicists and healthcare professionals. For one thing, many of them operate under the assumption that disability is a bad thing that significantly and unambiguously reduces a person's quality of life. Recent work on disability, however, casts serious doubt on this assumption. In addition, there has been little connection between biomedical ethics and the philosophy of well-being. But any adequate account of quality of life must grapple with philosophical questions about the nature of the human good. In this paper, I draw upon critical disability studies and the philosophy of well-being to explore the relationship between disability and quality of life and some of its implications for contemporary bioethics and health care.
I focus on the perfectionist approach that ties well-being to the fulfillment of human nature. On this framework, which has roots in the Aristotelian ethical tradition, what is good for human beings is the development and exercise of the characteristic human capacities. Despite its longevity and theoretical appeal, there has been very little discussion of perfectionism in the bioethics and disability literature. Many scholars ignore or quickly dismiss it and are suspicious of any appeal to human nature. The neglect of perfectionism is problematic, however, because it provides the strongest support for the common view of disability as a harm. Many perfectionists have held that if someone is significantly physically or cognitively disabled, the claim that she is flourishing is impossible to maintain. For this reason, the theory must be addressed and critically analyzed. I examine the traditional Aristotelian version of perfectionism that emphasizes rational capacities and goods, and I explain why it carries the implausible implication that disability undermines quality of life, and therefore it is a flawed account.
But, I argue, the wholesale rejection of perfectionism and the scholarly aversion to human nature are unnecessary and undesirable because perfectionism provides an attractive framework for understanding well-being and disability. People like Jim illuminate the connection between human nature, disability, and well-being in a powerful way by challenging the conventional Aristotelian understanding and suggesting an alternative [End Page 334] one. I offer a new version of perfectionism that is able to accommodate and explain the phenomenon of disabled thriving by prioritizing the social capacities of human nature and the corresponding goods of personal relationship. The reason why many disabled persons flourish is that relationships have the greatest welfare value, and relational well-being usually can make up for any ill-being that might result from impairment. By defending an alternative version of perfectionism that affirms disabled flourishing, I aim to give a more plausible account of well-being and to alleviate the widespread worry about conceptions of the good that are based on human nature.
Throughout the paper, I show how one's view of disability and quality of life has important consequences for specific bioethical debates and clinical practices, using a cluster of issues related to Down syndrome as timely illustrations. Two prominent examples are the withholding of life-sustaining treatment from severely disabled newborns and the increasingly popular practice of prenatal genetic testing for disability, followed by selective abortion. These practices usually reflect the common view that disabled persons cannot have a high quality of life. For this reason, they highlight the crucial importance of understanding the impact of disability on well-being. By the end of the paper, I hope to have sketched a perfectionist approach that gives a more plausible account of the relationship between disability and well-being than those offered by the common view and the traditional Aristotelian view, one that provides a better source of practical guidance in cases that involve judgments about the quality of disabled lives.
In what follows, I begin with an exposition of the common view that disability always reduces well-being and is incompatible with a high quality of life (Section II), followed by an overview of the philosophy of well-being and an examination of Aristotelian perfectionism and its connection to the common view (Section III). Then I offer a critical evaluation of the common view (Section IV), arguing that it should be rejected in light of the testimony of disabled individuals, empirical evidence on disability and well-being, and real-world counterexamples. I go on to confront an important critique of perfectionism that says it should be dismissed in light of its false implications concerning the disabled (Section V). In response, I offer an alternative, relationship-centered perfectionism that is able to overcome this objection (Section VI). I end by exploring some practical implications for specific ethical issues in healthcare (Section VII). [End Page 335]
II. THE COMMON VIEW: DISABILITY AS A HARM
Three major questions within disability studies are the definition or concept of disability, the correct model of the nature of disability, and the relationship between disability and well-being. The third question is the focus of this paper. There is dispute over the term 'disability,' but I am using it in a neutral, ostensive sense to encompass what goes under the heading of both impairment and disability (narrowly construed). In this paper, 'disability' is an umbrella term that picks out the conditions we usually classify as disabilities: blindness, deafness, Down syndrome, autism, paraplegia, quadriplegia, cerebral palsy, spina bifida, and so on. Those who think that disability is wholly a social construct can simply read me as saying 'impairment' instead of 'disability.' I will not weigh in on the dispute between the 'medical model' and the 'social model' of the nature of disability because nothing in this paper hinges on which view is correct. The concept of well-being will be discussed in detail below, but for the purposes of initial clarification it should be noted that 'well-being' and 'quality of life' will be used interchangeably to refer to that which is good for individuals, benefits them, and is in their interest.
A complete account of the relationship between well-being and disability is a complicated task that requires a more detailed and nuanced treatment than can be provided here. There are different ways that disability can affect well-being, and it is too simplistic to say that disability is simply good for persons or bad for persons in an unqualified sense.2 In addition, the impact of disability on well-being will vary depending on the particular disability in question. It is difficult to generalize because there are many different kinds of disability, with some having a significant impact on well-being and others having little to no impact on it. The focus of this paper is disability in general (cognitive and physical, mild and severe, etc.), with special attention given to Down syndrome in some places. But rather than examining every particular disability and explaining all the ways that disability affects well-being, I will narrow my focus to one common position and its opposition.
It is often assumed that disabled persons generally have lives of low quality. According to what I am calling the Common View, in virtually all cases disability is a bad thing that significantly reduces a person's quality of life.3 Disability always makes a person worse off, and this badness is due to the impairment or disability itself rather than adverse social factors. One contemporary proponent of the Common View, at least when it comes to "serious" disabilities, is Dan Brock. He claims that "serious disabilities [End Page 336] are, all else being equal, undesirable disadvantages," and "for the entire class of people who suffer a serious disability it is, on balance, a burden, even if for some individuals it turns out to be a benefit for them, for others, or for society" (2005, 98; 88).4
This understanding of disability is deeply engrained in our culture. Joan Retsinas observes the following:
Attitudes toward congenital disability per se have not changed markedly. Both premodern as well as contemporary societies have regarded disability as undesirable and to be avoided. Not only have parents recognized the birth of a disabled child as a potentially divisive, destructive force in the family unit, but the larger society has seen disability as unfortunate.(1991, 89; cited in Asch 2001, 306)
Despite the fact that the majority of disability scholars today reject the Common View, it is still the most popular position among bioethicists. Adrienne Asch points out:
Although bioethics has been the means of challenging unbridled uses of technology and of calling for protections for participants in medical research, most bioethics literature has never contested prevailing notions of what it means to have an illness or impairment or to be a person with a disability. … Most bioethics literature and most legal decisions in bioethics cases conclude that the impairment reduces the quality and value to others and to self of the life lived.(2001, 302)
The Common View is also pervasive in healthcare. Disability is typically considered a substantial harm or burden that reduces a person's quality of life, especially when it comes to decisions about providing, withholding, or withdrawing treatment. Sunil Kothari, a physician, accuses his fellow clinicians of "systematic misperceptions" regarding disability. He documents a series of studies showing that healthcare professionals tend to drastically underestimate the quality of life of people with disabilities (2004).5
In sum, it is safe to say that the majority opinion among the general population, bioethicists, and healthcare professionals is that disabled people have a significantly lower quality of life merely in virtue of their impairment (as opposed to social factors), which reflects the assumption that a disabled life is less valuable than a non-disabled life. An even stronger variant of the Common View, which is less prevalent but still disturbingly common, is that disability is overridingly bad: it guarantees that a person's life will be bad on the whole, all things considered. [End Page 337]
Issues involving persons with Down syndrome provide clear and consequential illustrations of the Common View in action. Take the famous "Baby Doe" case, which involved the decision of whether to provide life-saving treatment for a disabled newborn. In 1982, an Indiana infant with Down syndrome who had a correctable tracheoesophageal fistula was allowed to die. His parents declined surgery to correct the condition and instead chose to withhold nutrition and hydration, causing the baby's death. During the ensuing court case, the obstetrician candidly testified that even if the surgery had been performed successfully, "the possibility of a minimally adequate quality of life was non-existent [because of] the child's severe and irreversible mental retardation" (Pence 2004, 220).
Consider also the increasingly popular practice of prenatal genetic screening and selective abortion. Data on the rate of Down syndrome births in Iceland, for example, indicates that 99% of pregnant women choose to abort fetuses that test positive for Down syndrome. A widelypublicized recent report documented that "since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women—close to 100 percent—who received a positive test for Down syndrome terminated their pregnancy. Iceland has on average just one or two children born with Down syndrome per year" (Quinones and Lajka 2017).Other countries do not lag far behind: "According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995–2011); in France it's 77 percent (2015); and Denmark, 98 percent (2015)" (Quinones and Lajka 2017).
These examples highlight the important connection between one's view of disability and specific ethical decisions. A major motivation for both of the aforementioned practices is the assumption that someone with Down syndrome will not be able to have a high enough quality of life to count as a "life worth living," and therefore should be allowed to die or aborted. Baby Doe's parents and their obstetrician cited this assumption when attempting to justify their decision, as do many of those involved in Iceland's healthcare system. Helga Sol Olafsdottir, an employee of Landspitali National University Hospital of Iceland, is on record as saying, "We don't look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication … preventing suffering for the child and for the family" (Quinones and Lajka 2017). She is not alone in this opinion. In a study from the Netherlands, 83% of mothers who had aborted their Down syndrome fetuses reported that they were motivated by a belief that Down syndrome would be too [End Page 338] heavy a burden for their child to bear (Korenromp et al 2007.) As these examples illustrate, the relationship between disability and quality of life is not just a topic of academic or theoretical interest, but one that has dramatic practical effects on flesh-and-blood individuals. If the Common View is mistaken, as I will contend it is, it is a false doctrine that has life-and-death consequences.
III. THE PHILOSOPHY OF WELL-BEING AND ARISTOTELIAN PERFECTIONISM
Why is the Common View so widespread in contemporary bioethics and healthcare? A satisfactory sociological answer to this question would require a separate study in itself. Rather than attempting to identify all the motivations and reasons people have for adopting the Common View, I will focus on one that is popular among bioethicists, healthcare professionals, and the general population, which also happens to offer the strongest theoretical support for the view that disability precludes well-being. From a philosophical perspective, the Common View is connected to a longstanding tradition in ethics: an Aristotelian, perfectionist framework that ties well-being to the fulfillment of human nature. Before examining this approach and its implications for disability, I will offer an overview of the philosophy of well-being and explain why it is important for the topics covered in this paper.
'Quality of life' is a nebulous term with a multiplicity of meanings in bioethics and healthcare.6 I am using it as a synonym for 'well-being' and its opposite 'ill-being' (i.e., benefit and harm), which seems to reflect the most common usage of the term.7 'Well-being' refers to that which is intrinsically good for an individual, benefits her, and is in her interest. It is important to clarify the type of value in view here. First, it is goodness for a person, not the value of a human person herself or the value of a person's life for others or for society. Second, it is prudential value rather than one of the other kinds of value that contribute to the overall goodness of a life (e.g., moral, aesthetic, or epistemic value).8 For my purposes, quality of life and well-being are roughly equivalent to several other notions frequently employed in medical decision-making: the best interests standard, the assessment of benefits vs. burdens of treatment options, and a broad conception of health like that of the World Health Organization.9
To avoid misunderstanding, it is worth noting that in employing the notion of quality of life, I am not addressing the debate between a "sanctity of life ethic" and a "quality of life ethic." All of my claims in this paper are consistent with both of these broader ethical doctrines. I am referring [End Page 339] to the question of what makes a life go well or badly for the one living it, not the question of whether human life is always intrinsically valuable and deserving of moral respect regardless of how well or badly that life is going. Even those who are committed to the position that human life is intrinsically valuable or sacred, and that the intentional killing of human beings is always morally wrong, can and should make quality-of-life judgments about individuals' well-being and the benefits and burdens of treatment options. It is perfectly consistent to hold that all human beings have full moral status, equal intrinsic value and dignity, and deserve basic moral respect even though their quality of life differs greatly.10 It is also worth noting that I will not discuss any quality-of-life measures, such as QUALYs, which are often used in healthcare to operationalize the concept of quality of life. Instead, I will focus on the nature of well-being: what really is good and bad for individuals.
The concept of quality of life is very prominent in contemporary bioethics and healthcare, where appeals to benefits and harms/burdens are ubiquitous; and quality-of-life considerations have an important bearing on a myriad of health care-related issues. It is surprising, then, that in comparison to the vast literature on quality of life there has been relatively little connecting quality of life to the philosophy of well-being. As Dan Brock observes, the biomedical ethics literature "provides little in the way of well-developed, philosophically sophisticated accounts of the quality of life or of a good life," but at the same time "it is a rich body of analysis, data, and experience on which philosophical accounts of a good life can draw" (1993, 126). One of the aims of this paper is to forge a tighter link between these two fields.
Philosophical theories of well-being attempt to explain the good-making features of a life—what is good for us and why. Our view of the nature of well-being will directly influence our view of the prudential value of disability. What we think about the impact of disability on quality of life will hinge on which theory of quality of life we assume. For example, if we think that well-being is a function of pleasure, and there is strong evidence that disabled persons experience significantly less pleasure than the non-disabled, we will have good reason to think that disability inhibits well-being. In this paper, my focus is on a particular theory known as perfectionism, which says that what is good for us is human flourishing : the fulfillment of human nature or the development and exercise of the characteristic human capacities.11 On this approach, well-being consists in the development and exercise of our natural physical, cognitive, volitional, [End Page 340] emotional, and social powers. Knowledge, for instance, is good for us because it fulfills our intellectual capacities.12
Perfectionism is an objective theory of well-being. Subjective views hold that what is good for someone is a function of her mental states alone—beliefs, desires, pleasures or pro-attitudes. Objective views hold that what is good for someone is not a function of these subjective features but is a matter of achieving objective, mind-independent or attitude-independent goods. Individuals are not the ultimate authority on what is good for them and how well their lives are going, and they can be mistaken about their own welfare. Both conceptions are pervasive in healthcare. Subjectivist assumptions about quality of life come into play when evaluating patients' ability to enjoy pleasurable experiences, avoid pain and suffering, fulfill their desires and preferences, achieve their goals and life plans, and be satisfied with their lives on the whole. Objectivist assumptions are reflected in considerations about the preservation of life and avoidance of death; the ability to engage in ordinary activities like work and play; the realization of objective goods like health, relationships, achievement, and autonomous choice; the restoration and optimization of physical and psychological functioning; and the development and exercise of basic human capacities. It is a mistake to think that quality of life is necessarily subjective or objective, and it is often taken to encompass both aspects of a life.
All of my general contentions about disability and quality of life are consistent with all the major theories of well-being. In this paper, I assume a perfectionist framework because it has received very little attention in the literature, and it is an attractive framework for biomedical ethics. It also poses the greatest challenge to the claim that disabled individuals can have a high quality of life. The reason is that there is strong empirical evidence that disabled people do not report significantly lower levels of subjective well-being than the non-disabled (I discuss this data in the next section). Hence, if we assume a subjective theory where well-being is a function of mental states and individual self-assessment, it is much easier to establish that disabled persons thrive. Perfectionism, by contrast, is the easiest theory to use to defend a negative view of disability. For one thing, it is an objective theory, so the subjective self-evaluation of disabled persons does not straightforwardly tell us whether they are objectively flourishing. Second, disabilities typically are thought to inhibit or preclude the development and exercise of human capacities. I return to these points below. [End Page 341]
Perfectionism has significant appeal as a framework for well-being. For one thing, it recognizes the objective dimension of well-being, unlike purely subjective theories such as hedonism and desire theory, which hold that well-being is solely a function of pleasure and desire satisfaction, respectively.13 On a perfectionist analysis, an objective good like friendship contributes to well-being directly, non-instrumentally, and non-derivatively, rather than being an instrumentally valuable source of pleasure, desire satisfaction, or some other subjective mental state that is the true bearer of intrinsic prudential value. A person's well-being increases when she develops and exercises her social powers by actively participating in personal relationships with others. It is plausible to think that at least some goods—e.g., friendship, health, wisdom—have objective value and benefit a person even if she does not take pleasure in them, desire them, or care about them. It is equally plausible to see some harms—e.g., loneliness, illness, and ignorance—as objective evils that detract from a person's flourishing regardless of her mental states. Perfectionism validates these intuitive judgments.
A competing 'objective list' approach to well-being also accounts for the objective aspect of well-being by positing a list of things that are good for us, where each of these goods is basic and irreducible to some more fundamental good. Many people are dissatisfied with objective list theories, though, because they merely identify the various goods but do not explain what makes each of them good or provide a unifying thread that ties them together. Instead of positing an unconnected heap of brute goods, perfectionism offers an underlying framework that unifies all these goods and explains what makes them good: they all fulfill various aspect of human nature.14 On top of this advantage, the distinction between perfectionism and objective list theory is important for the purposes of this paper because, as I explain below, the strongest case for the Common View targets disability's impact on the development and exercise of human powers rather than the realization of objective goods.
Furthermore, perfectionism should be especially attractive to healthcare professionals because it has commonsense, intuitive plausibility in the context of medical practice. The primary end of medicine is the good of the patient, and much of what doctors, nurses, and therapists do is aimed at healing, restoring, or improving their patients' physical and psychological capacities so that they grow and function as they should. These activities presuppose that the development and exercise of the characteristic human powers is beneficial to patients. [End Page 342]
Perfectionism also has the virtue of wide applicability and explanatory scope, especially in the healthcare setting where quality-of-life considerations pertain to both adults and children. The same account of well-being applies to patients of all ages because the same fundamental things are good and bad for both children and adults—the healthy growth, development, and exercise of their human powers. Subjective theories, by contrast, have a hard time accounting for commonsense judgments about the well-being of children. If well-being consists in desire-satisfaction, for example, then what is good for infants and young children is the satisfaction of their desires or preferences. But virtually everyone recognizes that the desires of children are often not good—and are often bad—to fulfill. And in the case of infants, the psychological mechanisms needed for authentic desire-satisfaction are not yet developed, precluding a desire-based account of infant well-being (See Kraut 2007, 105).15
For all of these reasons, perfectionism enjoys both theoretical and practical appeal in the context of healthcare.
The features and strengths I have mentioned so far apply to perfectionist theories in general. But there are a variety of specific forms that such theories can take. The mainstream version of perfectionism is Aristotelian in spirit and emphasizes that we are rational animals. Pride of place is given to the cognitive and volitional capacities and their corresponding goods of knowledge and self-awareness, autonomy, and practical reasoning and choice. In discussions of what is most distinctive about humanity and what plays a dominant role in our flourishing, the focus is on wisdom (knowledge and understanding, practical wisdom, or both) and autonomous agency (free choice, self-determination, the formation and execution of a rational life plan, and so on.). The locus classicus of this view is, unsurprisingly, Aristotle, especially Book X of the Nicomachean Ethics, where he argues that intellectual contemplation is the highest and most perfect kind of human activity, followed by the life of virtue (i.e., practical wisdom in action). Erik Ostenfeld, a contemporary proponent of the Aristotelian view in biomedical ethics, expresses it as follows:
[Aristotle] claims that eudaimonia (human flourishing) is the realization of mental capabilities (though certain external goods, a good fortune, are required too). What then does the realization of mental capacities, i.e., activity in accordance with complete virtue mean? It means a realization of both feelings and intellect, both practical and theoretical. … The flourishing man or woman to Aristotle is a person who is well-adapted and well-functioning socially and psychologically, and who lives a rich life in the [End Page 343] sense that he or she uses all human potentialities. … That is to say, a life in contemplation of truth and as a responsible citizen and part of a society and a family.(1994, 31)
This picture of human flourishing is deeply embedded in the contemporary moral milieu, and a significant number of contemporary bioethicists and healthcare professionals operate with Aristotelian presuppositions about human nature and quality of life, even if they are unaware of Aristotle or the perfectionist tradition. Intellectual abilities for knowledge and reasoning are often considered to be weighty determinants of quality of life. And with respect to autonomous agency, we need only observe the common tendency to make autonomy the supreme good and the resulting hegemony and prioritization of self-determination in contemporary bioethics and medicine. For my purposes, the most important feature of Aristotelian perfectionism is the Rationalist Thesis.
Rationalist Thesis: The rational capacities of human nature and their corresponding goods have greater prudential value than all the other human capacities and goods. The development and exercise of the cognitive and volitional powers contribute more to well-being than the development and exercise of the other human powers.16
Perfectionism appears to provide the best theoretical support for the Common View that disability reduces well-being. In the minds of many scholars, perfectionism implies that disabled persons are "defective" instances of human nature who are incapable of a high quality of life. As Thomas Schramme notes, "It is indeed plausible to say that many people regard restrictions of disabilities as bad because they see them as undermining basic human capacities, such as seeing, hearing, speaking, walking, abstract thinking, remembering, and so on" (2017, 166). For instance, those who are physically impaired may not be able to exercise their physical capacities and participate in the goods of physical functioning, work and play, or the appreciation of beauty. Or those with cognitive impairments might be incapable of exercising their rational powers to achieve knowledge, self-awareness, or autonomy. Richard Kraut, one of the leading philosophical defenders of perfectionism, maintains the following:
If you say of a human being that he is flourishing, your statement is thrown into doubt if he is correctly described either as psychologically or as physically unhealthy, weak, damaged, and stunted. Certainly, if he suffers [End Page 344] from both kinds of disabilities, the claim that he is flourishing, or that he is doing well, is impossible to sustain.(2007, 133)
Traditional Aristotelian perfectionism makes this problem even worse, at least when it comes to the cognitively disabled, including persons with Down syndrome. If intellectual and volitional goods have the greatest prudential value, and cognitive disabilities prevent the achievement of these goods, then we must conclude that the severely cognitively disabled are excluded from flourishing. It is no coincidence, then, that Aristotle himself endorsed the common ancient practice of killing disabled infants by leaving them outdoors to die.17 In our own time, there is a widespread tendency to assign autonomy a value greater than all the other human goods, and a corresponding mindset that cognitive impairments that diminish the capacities for autonomous agency make a life much less valuable. In the minds of many bioethicists and healthcare providers, a non-autonomous life is a far worse life, to the point where it is often considered a "life not worth living." This kind of rationalistic bias is not restricted to ancient philosophers, the general population, bioethicists, or healthcare professionals. It also affects disability scholars. Adrienne Asch and David Wasserman put it this way:
In one area, cognitive impairment, disability scholarship often displays the same limitations of experience and understanding as bioethics. Like bioethicists, disability scholars are typically highly educated individuals who prize rationality and intellect, place a premium on 'autonomy,' and tend to denigrate, or ignore, the interests and rights of people deficient in those characteristics.(2006, 167)
IV. DISABLED FLOURISHING
I have noted that many people take it for granted that disability is harmful and significantly detracts from quality of life. In recent years, however, scholars across a variety of disciplines have called the Common View into question and have highlighted the complexities involved in understanding the nature and value of disability. One of the lessons to be learned from recent work in disability studies is that we cannot simply assume that disability inhibits well-being. On the contrary, many disabled individuals can and do experience high well-being, just like the non-disabled.18
Two lines of evidence support the claim that disabled individuals are capable of a high quality of life. The first is empirical research on happiness and well-being and the testimony of the disabled community. A substantial [End Page 345] amount of data indicates that the majority of disabled people report to have a good quality of life. While non-disabled members of the general public and the healthcare professions typically think that being disabled is something that significantly lowers one's quality of life, this radically diverges from what disabled people actually say about their own lives (Albrecht and Devlieger 1999; Gill 2000; Kothari 2004).19 Although someone might unreflectively assume that disabled people consistently rank their well-being lower than the non-disabled do, this is not the case. In most studies there is no significant difference between the two groups with respect to self-reports about their quality of life (Gill 2000; Amundson 2005).20
As Elizabeth Barnes illustrates at length, while some disabled people do think that their disabilities decrease their well-being, others differ:
Many disabled people claim that disability is not bad for them, even in their actual, present circumstances. For some, this claim is similar to that of the grateful cancer survivor—they claim their lives have on the whole gone better because of disability, but they do not value their experience of disability itself. Perhaps their disability has taught them valuable lessons in perseverance, perhaps it has made them stronger, etc. But others claim to value their experience of disability itself and strongly reject narratives of 'overcoming' disability. It's not just that disability happened to have some nice consequences which they valued enough to not mind the disability, but rather that being disabled is something valuable. This idea is the bedrock of the disability pride movement.(2016, 92, emphasis in original)
Barnes offers a lengthy argument that we should trust the testimony of the disabled when it comes to the relationship between disability and well-being. She addresses the most common form of skepticism about such testimony, which appeals to the phenomenon of adaptive preference to cast doubt on the ability of disabled individuals reliably to judge their quality of life, and she attempts to show that it is unjustified. In her view, much of the skepticism about disability-positive testimony constitutes a form of testimonial injustice (Barnes 2016, Ch. 4). Whether or not Barnes's response is entirely successful, she is correct that merely to dismiss the testimony of disabled persons about their own well-being would be an instance of epistemic injustice, which is one reason why this testimony provides support for the position that disabled individuals flourish. The testimonial evidence is defeasible, but it is evidence all the same.
Now, one might worry that the studies in question rely upon self-reports and often measure subjective well-being—how a person evaluates his or her [End Page 346] own life—and for this reason they cannot be used to support an objective theory like perfectionism. Even if we can trust the testimony of disabled individuals about their subjective well-being, we should be skeptical of taking it as an indicator of their objective well-being, because the relevant studies do not measure objective well-being and individuals could be mistaken about their welfare.21 This worry, while correct to point out that we cannot make a simple, unexamined inference from assessments of subjective well-being to judgments about objective well-being, does not undermine the empirical evidence. For one thing, most studies measure not just mental states, but also objective goods like health, friendship, and meaningful activity. More importantly, self-reported subjective well-being still provides evidence about objective well-being as long as we make the plausible assumptions that subjective and objective well-being usually go together, and that most people are not systematically mistaken about their own lives, especially when it comes to objective features like health, relationships, accomplishments, and work. Finally, this kind of skepticism is misguided for the same reason it is wrong to discount self-reports about subjective well-being: it involves an unjustified dismissal of the testimony of disabled people about their objective quality of life.22
Additional support for the position that the disabled can flourish is the existence of communities where such flourishing is apparent. One of the best examples is L'Arche, which was founded in 1964 in France by Jean Vanier and has since become an international organization with around 150 communities across thirty-five countries. L'Arche exists to welcome, serve, and empower those with disabilities by forming communities of disabled and non-disabled persons who share a home and a common life. When visiting a L'Arche home, one cannot help but be struck by the powerful and undeniable example of disabled people living rich, meaningful, thriving lives.23 Jim, whose story began this paper, is a shining example of this phenomenon.
Another example is Adam, a resident of the L'Arche Daybreak Community in Toronto whose story is told in Henri Nouwen's deeply moving book Adam (Nouwen 1997). Adam was severely cognitively and physically disabled. He was never able to speak and never said a word his whole life. He was also an epileptic who experienced daily seizures and used a wheelchair most of the time. Adam was completely dependent on others and needed assistance with all of his daily activities like bathing, dressing, and eating. When he lived in an institutionalized hospital setting in his early adulthood, he struggled and suffered greatly. But when he [End Page 347] moved into the L'Arche home, he flourished. As Nouwen illustrates in abundant detail, the reason was social: Adam was lonely and isolated in the hospital, but at L'Arche he was surrounded by friends and family. Despite his significant limitations and his inability to speak, he was able to form deep personal connections, which enabled him to have a profound impact on Nouwen's life and the lives of many others. Reflecting on the moment when he gazed upon Adam's body at his wake, Nouwen thinks to himself:
Here is my counselor, my teacher, and my guide, who could never say a word but taught me more than any book, professor, or spiritual director. Here is Adam, my friend, my beloved friend, the most vulnerable person I have ever known and at the same time the most powerful.
Real-world examples of individuals like Jim and Adam could be multiplied at length. This living, breathing evidence, combined with the empirical data and the testimony of the disabled, give us good reason to think that the flourishing of the disabled is a fact that a correct theory of well-being must acknowledge and explain.
The case is even stronger if we focus on Down syndrome. In a study conducted by Harvard researchers, 99% of people with Down syndrome indicated that they were happy with their lives (Skotko, Levine, and Goldstein 2011). This percentage is significantly higher than the general population. In addition, 97% said they like who they are and 96% said they like how they look. According to the authors of the study,
In our qualitative analysis, people with Down syndrome encouraged parents to love their babies with Down syndrome, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without Down syndrome. Overall, the overwhelming majority of people with Down syndrome surveyed indicate they live happy and fulfilling lives.(2011, 2360)
When respondents were asked "What would you like to tell doctors about your life with Down syndrome?", the most common response was some variant of "life is good" or "I'm happy to be alive."
I have already mentioned Jim, who has Down syndrome and clearly thrives. Another striking case is Frank Stephens, who delivered a powerful and moving speech before the U.S. House of Representatives Appropriations Committee in 2017. In his Congressional testimony, Stephens said: [End Page 348]
I am a man with Down syndrome and my life is worth living.
Why do I feel the need to make that point? Across the world, a notion is being sold that maybe we don't need to continue to do research concerning Down syndrome. Why? Because there are prenatal screens that will identify Down syndrome in the womb, and we can just terminate those pregnancies. In places as widespread as Iceland, Denmark and South Korea, government officials have proclaimed that these government-encouraged terminations will make them "Down syndrome-free by 2030."
It is hard for me to sit here and say those words. Let's be clear, I completely understand that the people pushing that particular "final solution" are saying that people like me should not exist. They are saying that we have too little value to exist.
That view is deeply prejudiced by an outdated idea of life with Down syndrome. Seriously, I have a great life.24
To recap, the testimonial evidence of the disabled, scientific studies of disability and quality of life, and real-life examples provide compelling evidence against the Common View and good grounds for thinking that disabled individuals can and do achieve a high quality of life. It is vitally important for bioethicists, healthcare professionals, and the general public to recognize that being disabled is compatible with robust human flourishing. Numerous authors have argued at length for this position and have successfully undermined the Common View. But they have mostly ignored the perfectionist framework that frequently underlies it. Barnes, for example, argues that none of the leading theories of well-being imply that disability is a "bad-difference" or intrinsic harm (2016, 107–18). Her insightful treatment covers objective list theory, desire theory, and hedonism, but leaves out perfectionism. As I noted earlier, perfectionism is different from objective list theory, so critiques of the latter do not directly apply to the former. This is a common oversight in discussions of well-being and disability, and it is significant because perfectionism provides the strongest theoretical support for the Common View, and therefore must be considered.
Hans Reinders is a rare example of someone who explicitly addresses perfectionism in the context of disability. He contends that perfectionism should be rejected because it excludes the disabled from human flourishing. First, he zeroes in on the traditional Aristotelian conception of human nature and the human good. He critiques "the Aristotelian-Thomist [End Page 349] tradition [in which] 'nature' refers to the development and proper use of the powers of intellect and will. … [and] the reason why profoundly disabled human beings do not lead a human life properly so called from the perspective of our final end is that they do not develop the capacities of reason and will" (2008, 92). As Reinders puts it, "Because [this account] defines the human good in terms of our capacities for reason and will, there is no way in which human beings with a profound intellectual disability can be said to participate in the human good" (118). The problem, as Reinders sees it, is not only that traditional perfectionism excludes the disabled from human flourishing, it also implies that they are less than fully human. In light of "the claim that the end of being human is the fulfillment of our natural being that consists in the perfection of the capacities of reason and will … it is difficult to avoid the conclusion … that the lives of these human beings could be anything but 'subhuman'" (101).25
It is not just Aristotle's or Aquinas's version of perfectionism that Reinders rejects, but perfectionism in general. He goes on to argue the following:
[On the perfectionist approach] there is goodness proper to human nature consisting in the perfection of its natural capacities, which leads to the judgement of imperfection to the extent that the proper use of these capacities is not actualized. What follows is that [this view] cannot without serious difficulty be true of profoundly disabled human being[s]. … The reason is that their potential for developing the capacities inherent to human nature is very limited indeed.(2007, 173)
Reinders alleges that "the framework of Aristotelian-Thomist metaphysics creates the danger of an anthropological 'minor league' for human beings with profound disabilities" (2007, 181 n. 26), and ultimately he condemns "the negative accounts of disabled lives—'evil,' 'defect of nature,' 'limitations and sufferings'—that follow from the Aristotelian-Thomist concept of the human good" (2008, 122).
Reinders is correct that disability poses a serious problem for traditional Aristotelian perfectionism. As I have argued, there are good reasons to think that the flourishing of the physically and cognitively disabled is a fact that a correct theory of well-being must accommodate and explain. Any theory that implies that such individuals are incapable of thriving conflicts with the empirical data and the observable fact that many disabled persons experience a high quality of life. Traditional Aristotelian perfectionism excludes the disabled from flourishing, and this is a sufficient reason to think that it fails to provide a satisfactory account of well-being or a [End Page 350] sound basis for medical and moral judgments concerning the disabled. However, Reinders is mistaken about two things. First, he is wrong to reject perfectionism in general for this reason. Second, he is wrong to reject Aquinas's perfectionism in particular. I explain why in the next section.
VI. RELATIONSHIP-CENTERED PERFECTIONISM
The conclusion to be drawn in light of disabled flourishing is not that the perfectionist approach to well-being should be rejected, because one cannot be a perfectionist without endorsing either the Aristotelian version or the Common View. Instead, it is that this framework must be modified to more accurately represent human nature and human flourishing. In this final section, I will present a Thomistic, relationship-centered version of perfectionism that is different from the traditional Aristotelian version. This alternative approach holds that the social aspect of our nature is the most crucial for understanding what we are and how we flourish.
The false implication that most disabled individuals cannot thrive stems from the Rationalist Thesis and a flawed philosophical anthropology that serves as the basis of Aristotelian perfectionism. This approach focuses on the intrinsic properties of human nature: ones that can be identified and understood by looking just at the individual human being herself, and nothing outside of the individual. Relational properties, by contrast, make essential reference to something external to the individual. Because well-being is a matter of nature-fulfillment, a flawed conception of human nature will lead to a flawed picture of well-being. The phenomenon of disabled flourishing shows the implausibility of an intrinsic-properties conception of human nature that prioritizes rational powers and goods.
Reinders mistakenly interprets Aquinas along the lines of traditional Aristotelian rationalist perfectionism. In fact, Aquinas offers an alternative picture of human nature and the human good.26 He argues at length that union with God is the highest good for human beings, who "attain their last end by knowing and loving God" (1920, I–II.1.8).27 He says that "in that happiness [of union with God] there will be the aggregate of all good things, because whatever good there be in these things, we shall possess it all in the Supreme Fount of goodness" (ST I–II.4.7 ad 2). Aquinas understands union with God as a relational phenomenon in which a human person achieves perfect happiness through an intimate personal connection with a personal God.28 He defines the supreme theological virtue of charity as friendship with God (ST II-II.23.1). On his analysis, "Charity signifies not only the love of God, but also a certain friendship with him, which [End Page 351] implies, besides love, a certain mutual return of love, together with mutual communion" (ST I-II.65.5). My goal here is not to defend a specific reading of Aquinas or to analyze his particular theological account. Instead, it is to look to Aquinas as inspiration for an understanding of human nature and human flourishing that represents a significant departure from mainstream Aristotelian perfectionism. Aquinas's relationship-centered approach can be transposed into a secular account of human flourishing that places the primary emphasis on sociality rather than rationality.29
A perfectionism that operates with a different philosophical anthropology—one that prioritizes the relational properties of human nature—can accommodate and explain disabled flourishing. The basic idea is that human beings who are impaired with respect to some human capacity can still experience social thriving. The reason why many disabled individuals have a high quality of life is that their lives are rich in loving and fulfilling relationships, and in most cases relational well-being can make up for any ill-being that might result from disability. Although impairments sometimes make people worse off to some degree, the disabled can still fulfill their social capacities and flourish socially, which is enough to make their lives go well for them on the whole.30
To be clear, I am not claiming that this type of explanation applies to every case of disabled flourishing. There are other ways for disabled people to flourish in addition to scoring high in social well-being (e.g., Stephen Hawking's thriving probably is attributable to his excelling with respect to intellectual goods). But I do think this analysis applies to the majority of cases and is a very common explanation of why disabled people have good lives.
Here it is worth recalling the arguments presented in Section IV to establish that disabled persons can thrive, which also lend support to relationship-centered perfectionism. One thing cited there is the manifest flourishing occurring in L'Arche communities. According to Jean Vanier, its founder, "The secret of L'Arche is relationship: meeting people, not through the filters of certitudes, ideologies, idealism or judgments, but heart to heart; listening to people with their pain, their joy, their hope, their history, listening to their heart beats."31 The stories of Jim and Adam illustrate that even the severely disabled are capable of luminous relational flourishing. Nouwen, echoing the view expressed by Vanier, says: "Adam's humanity was not diminished by his disabilities. Adam's humanity was a full humanity, in which the fullness of love became visible for me, and for others who grew to know him" (1997, 50–1). Adam and Jim stand [End Page 352] out as a shining examples of socially-fulfilled human nature because of their loving relationships, through which they connect with others in deep and life-changing ways. Examples like theirs, of good disabled lives that are rich in relationships, could be multiplied at length. The lives of such persons suggest that the most important factor in human flourishing is the fulfillment of our social nature through personal relationships.
This position is further supported by empirical data from the psychology of well-being and happiness.32 A massive body of research shows that relationships make a significant contribution to quality of life. Virtually every major study in the psychology of well-being identifies relationships as an essential component and primary determinant of well-being.33 And many suggest that relationships are the greatest contributor to well-being. In a meta-analysis of the literature, psychologists Richard Ryan and Edward Deci conclude the following:
Evidence supporting the link of relatedness to [subjective well-being] is manifold. Studies suggest that, of all factors that influence happiness, relatedness is at or very near the top of the list. Furthermore … affiliation and relationship-enhancing traits are among the most strongly related with [subjective well-being].
In a similar vein, several authors of the 2015 U.N. World Happiness Report argue that of all the determinants of well-being, social connection is the factor most strongly correlated with personal assessments of well-being: "It is the quality of genuine relational life (in a non-instrumental sense) that carries most of the weight, even compared to income, in people's estimation of subjective well-being" (Becchetti, Bruni, and Zamagni 2015, 141).
Martin Seligman, one of the pioneers of positive psychology, emphasizes that "the pursuit of relationships is a rock-bottom fundamental of human well-being" (2011, 21). He recalls a story about a time "when asked what, in two words or fewer, positive psychology is about, Christopher Peterson, one of its founders, replied, 'Other people'" (20). In a well-known study of the behaviors and personality traits that are correlated with high subjective well-being, Seligman and Ed Diener discovered that the single variable that is the most significant factor separating happy people from unhappy people is social relationships. They explain:
The very happy group differed substantially from the average and the very unhappy groups in their fulsome and satisfying interpersonal lives. The very happy group spent the least time alone and the most time socializing, and was rated highest on good relationships by themselves and by informants.(2002, 82) [End Page 353]
They summarize the most significant result of their study as follows:
Our findings suggest that very happy people have rich and satisfying social relationships and spend little time alone relative to average people. In contrast, unhappy people have social relationships that are significantly worse than average. One might conjecture that good social relationships are, like food and thermoregulation, universally important to human mood.(83)
In my view, the best explanation of why many disabled individuals flourish is that relationships contribute the most to the overall well-being of a human life. Rather than understanding human fulfillment primarily as a function of intrinsic properties, a more accurate philosophical anthropology emphasizes relational properties and sees human beings as creatures who are built for interpersonal connection. While rational goods like knowledge and autonomy are real and important goods, they are not the greatest goods. Ultimately, reflection on disability and well-being provides strong evidence against the Rationalist Thesis and suggests that a more plausible position is the Primacy of Relationships Thesis.
Primacy of Relationships Thesis: Other things being equal, the social capacities of human nature and the corresponding goods of personal relationship have greater prudential value and contribute more to well-being than the other human capacities and goods.
Although this thesis needs to be unpacked and qualified, and much more needs to be said to establish the truth of this position, the phenomenon of disabled flourishing gives us some reason to think that relationshipcentered perfectionism is more promising than the mainstream Aristotelian rationalist perfectionism. An approach that focuses on the social dimension of human nature and makes relationships the greatest good can avoid the implausible implication that most disabled individuals cannot thrive, and thus can avoid one of the most serious problems with perfectionism. This is a good reason to favor the relationship-centered approach over the traditional one.34
Now, I am not claiming that the Primacy of Relationships Thesis is the only way to explain disabled flourishing.35 But, as I have argued, I think it is the most plausible account because it captures what we see in the world around us. Similarly, I am not claiming that relationship-centered perfectionism is the only type of perfectionist theory that can acknowledge disabled thriving. There are other varieties of perfectionism that I have not explored in this paper, and they too might be able to affirm disabled flourishing.36 In my view, relationship-centered perfectionism is better [End Page 354] equipped than these other versions to explain the relationship between disability and well-being; but comparing the relative merits of these theories is a task for another time.
Adrienne Asch, the late bioethicist and disability-rights activist, observed that, "The values and perspectives of bioethicists profoundly influence their assessments of the quality of life of persons with disabilities and in turn influence central debates about how or whether to use such assessments to settle questions of clinical decision making or resource allocation" (2001, 301). And Ian Basnett, a disabled physician, explains why these issues matter for healthcare:
For disabled people, the training, attitudes, and behavior of health professionals toward them are all vital because of the important role health professions play in many disabled people's lives. … Many physicians are not trained to understand the perspective of disabled people and make any good judgments about quality of life. This is compounded by the biased view most physicians have of disabled people because most contact is limited to when we are sick or suffering from the most severe health problems.(2001, 452–3)
Sunil Kothari, a fellow physician, concurs with this assessment. He argues that in light of the normative and practical importance of quality-of-life considerations in healthcare, clinicians must gain accurate understanding:
Our obligation as clinicians is to make sure that our beliefs about quality of life after disability are accurate. … Given the evidence of how inaccurate our beliefs about quality of life with disability can be, I believe that the burden of proof has now shifted. When we as clinicians appeal to considerations of quality of life, we are obliged to verify and support our statements. … As in other parts of healthcare, our practice needs to become more evidence-based.(2004, 306)
In this paper, I have drawn upon philosophical arguments and empirical evidence to defend two central theses: (1) many disabled individuals can and do experience high well-being, and (2) there is a perfectionist conception of well-being that can affirm disabled thriving and avoid a common worry with theories that are grounded in human nature. The lessons that bioethicists and healthcare professionals can learn from this are, first, that disability is consistent with a high quality of life, and, second, that there is an objective, perfectionist, relationship-centered theory that can accommodate this fact. The fields of bioethics and disability studies [End Page 355] should change their attitude of neglect and dismissal toward perfectionism because both stand to benefit from an explicit, substantive, and accurate philosophical anthropology. I have suggested a new foundation for disability studies that consists of a radically social conception of human nature and the human good.
I have also attempted to forge connections between philosophical accounts of well-being and issues in healthcare ethics for the sake of a more accurate understanding of quality of life and better clinical practice. Attending to the real-life experience of the disabled and to empirical data concerning their quality of life can improve our bioethical theories, and better bioethical theories can improve our real-world practice, such as how we treat persons with Down syndrome.
If the position I have defended is correct and the disabled are capable of human flourishing, then the practices of allowing disabled newborns to die and selectively aborting disabled fetuses lose one of their primary moral justifications: a negative quality-of-life judgment about disabled lives. Insofar as these actions are based on the false assumption that disabled persons are incapable of a high quality of life, they are extremely morally suspect. In this vein, consider a prominent consequentialist defense of the practice of euthanizing severely disabled infants, the argument that such infants are incapable of having "lives worth living." This practice is supposed to be justified by the moral principle that is permissible to end the lives of individuals who fail to achieve a certain quality of life; and this principle depends on a particular theory of well-being, usually hedonism or desire theory.37 On my view, this moral principle is false for a variety of reasons, one of them being that disabled lives are not "lives not worth living." On a perfectionist approach, well-being is not a function of subjective pleasure or desire-satisfaction, but of objective flourishing. Even severely disabled individuals are able to achieve at least some human goods and flourish in some respects, despite the suffering they may experience as a result of their condition. It is implausible to think that disability makes a person's life bad on the whole; to the contrary, even severely disabled individuals like Adam are capable of flourishing. Moreover, on a relationship-centered view where personal relationships contribute the most to well-being, most disabled persons are capable of achieving the greatest goods and flourishing in the most crucial respect. Therefore, the consequentialist principle that authorizes their killing is false because it rests on a false conception of well-being. There are all sorts of implications for a host of other bioethical issues as well, given [End Page 356] that debates over genetic engineering, euthanasia and physician-assisted suicide, rationing and resource allocation, and healthcare justice, to name a few, typically involve judgments about the value of disabled lives.
Finally, if it is true that the phenomenon of disabled thriving points us toward a picture of human flourishing on which relationships are the greatest good, then reconfiguring our understanding of quality of life to reflect the primacy of relationships will be of the utmost importance for healthcare, a practice that has at its heart the special relationship between caregivers and patients.
Matthew Shea, PhD, is the Senior Clinical Ethics Fellow at the UCLA Health Ethics Center. His doctoral dissertation focused on the nature of well-being and the primacy of relationships for human flourishing and the moral life. His current research covers normative ethical theory, bioethics, and disability studies.
I am very grateful to Harold Braswell for helpful conversations and extensive comments on earlier versions of this paper. His generous advice greatly improved the finished product. Thanks also to Rabbi Elliot Dorff for feedback on the paper, Jeffrey Bishop and Eleonore Stump for the encouragement to write it, James Hynds for the creative title, Bruce Shea for several references, and two anonymous reviewers for their substantial and constructive comments. Last but certainly not least, thanks to Kathleen Shea for introducing me to the L'Arche community in St. Louis and sharing her insight and experience regarding her time there. She and our L'Arche friends have taught me a great deal about disability, the good life, and what it means to be human.
1. L'Arche is an international organization that forms live-in communities of disabled and non-disabled persons. I will discuss L'Arche in more detail later in the paper.
2. See Campbell and Stramondo (2017) for an excellent overview of this topic. See also Wasserman, Bickenbach, and Wachbroit (2005) for a collection of essays on various topics related to disability and well-being.
5. These studies usually ask a group of disabled individuals to evaluate the quality of their own lives, and then they ask a group of clinicians how they would evaluate their quality of life if they found themselves in the disabling conditions of the individuals in the first group. The consistent result is that the evaluations of the two groups are diametrically opposed, with the disabled group reporting a high quality of life and the clinician group reporting a very low quality of life.
6. The entry on quality of life in the Encyclopedia of Bioethics notes that "there is much ambiguity about what quality of life means, and consequently there is little agreement about the definition of this criterion" (Walter 2004, 1818). And one of the most popular texts in clinical ethics says that "there is little question about medicine's dedication to enhancing quality of life, but there are many questions about what quality of life consists of, about who determines quality of life, and about the effects of such judgments on the care provided to the patient" (Jonsen, Siegler, and Winslade 1986, 101).
7. See Aiken (1982), Brock (1993), Musschenga (1997), and Schramme (2017) for helpful surveys various meanings of 'quality of life.' All of these authors appear to concur with my identification of quality of life with well-being.
8. In addition, well-being should not be confused with goodness simpliciter—goodness that is not good for anyone or anything, just "good period." Furthermore, well-being is a normative notion that must be contrasted with the concept of happiness, usually understood as a mental state such as subjective satisfaction or contentment, a psychological condition that does not include evaluative judgments. Well-being has normative significance and is reason-giving. For a helpful taxonomy of these concepts, see Haybron (2008, Ch. 2).
9. "Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity" (Constitution of the World Health Organization, online at http://www.who.int/about/mission/en/). This broad, all-encompassing conception of health as overall well-being must be distinguished from a narrower conception of health as a natural, biological norm, e.g., Leon Kass's definition of health as "the well-working of the organism as a whole" and "an activity of the living body in accordance with its specific excellences" (Kass 1975, 29).
11. Perfectionism can be a theory of well-being or of some other kind of value, such as goodness simpliciter, the good life on the whole, or moral goodness. Throughout this paper, the focus is perfectionist theories of well-being. For a helpful overview of welfare perfectionism, see Bradford (2016).
12. One might be wary of perfectionism because of the assumption that it depends upon a metaphysically-loaded, controversial, or scientifically untenable conception of human nature. This worry is misguided. Although perfectionism traditionally has been associated with an Aristotelian metaphysics that includes essentialism and natural teleology, one can endorse perfectionism without committing to any metaphysically-loaded conception of human nature. All that is required is the claim that there is such a thing as a common human nature in the sense that: (1) all of the central human capacities are possessed by all or virtually all human beings; and (2) all of these powers belong to one and the same thing—an individual human being—and work together as a unified system. I am grateful to James Dominic Rooney for suggesting this way of articulating a minimalist conception of human nature.
13. One of the most significant concerns with perfectionism is that it does not sufficiently capture the subjective dimension of well-being. I think this charge is mistaken, and there is a way to develop a perfectionist theory that includes enough subjectivity. But this is a complicated debate that would take me far beyond the scope of this paper, and I will not address it here because my goal is not to defend perfectionism as the correct theory of well-being.
14. See Bradford (2016). Because of this key difference between the two theories, the frequent practice of classifying perfectionism under the heading of 'objective list theory' is not the most accurate way to taxonomize theories of well-being. A more fine-grained and precise taxonomy makes them two distinct types of objective theories.
15. One might worry that this line of reasoning could be used to support hard paternalism in medicine. But perfectionists usually reject paternalism on the grounds that autonomy is an important component of human flourishing. As Kraut explains, "Since our well-being consists in the exercise of our powers, and among these powers are those that are involved in reasoned choice, it is bad for us when matters that we can decide about, on our own, and take pleasure in controlling are taken out of our control" (2007, 196). Unlike babies, typical adult human beings are capable of understanding what is good for them and exercising some degree of autonomy. While some forms of paternalistic intervention are justifiable (e.g., attempting to thwart the will of a suicidal patient), paternalistic control tends to do more harm than good by diminishing the good of autonomy (234–8).
16. It is not the case that all thinkers within the Aristotelian tradition affirm what I am calling 'Aristotelian perfectionism' and the Rationalist Thesis. There are some Aristotelian philosophers who defend different theories of well-being altogether (e.g., Russell 2012) or defend a different version of perfectionism (e.g., Kraut 2007). I refer to the theory as 'Aristotelian perfectionism' because it is the view held by Aristotle and by the majority of perfectionists within the Aristotelian tradition.
17. He infamously declares: "As to the exposure and rearing of children, let there be a law that no deformed child shall live" (Aristotle, Politics VII 1335 b20, translated by Benjamin Jowett, http://classics.mit.edu/Aristotle/politics.html).
18. For good analyses of the relationship between disability and well-being and defenses of the position that the disabled are capable of high well-being, see Barnes (2016) and Campbell and Stramondo (2017).
19. In their landmark article, Albrecht and Devlieger (1999) call this phenomenon 'the disability paradox': "Why do so many people with serious and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these people seem to live an undesirable daily existence?" (977). These studies usually measure subjective well-being (how subjects rate their own lives), and the data includes ratings of various things: specific items like work and social relationships, overall life satisfaction, hedonic levels, etc. The terminology and methodology vary from study to study, but most studies use 'well-being' or 'quality of life' as a catch-all term for overall well-being.
20. For studies that do find a significant difference between the two groups, it is plausible that much of the difference is attributable to adverse social factors rather than features related to impairment itself. That being said, the empirical data does not speak with one voice. There are also studies supporting the position that disability tends to lower self-reported quality of life to a significant extent. See, for example, Lucas (2007). An in-depth and comprehensive review of the empirical data would have to be more complex and nuanced than the one I am providing here, but such an analysis is not possible in this paper. The bottom line, in my estimation, is that the counterevidence somewhat weakens the support that the disability-positive position gets from the empirical studies, but it does not neutralize the disability-positive case in the sense that on balance the total evidence is an even split between the disability-positive position and the disability-negative position. Instead, on balance the evidence supports the disability-positive position. Thanks to an anonymous reviewer for encouraging me to address this issue.
22. As Sara Goering explains, what we might think objectively lowers well-being "may not in fact do so, and … we need to listen carefully to people with direct experience of the conditions in question in order to develop objective criteria that are not simply common or popular criteria for measuring quality of life. Subjective quality of life claims surely have their limitations. … But discounting or even overriding them in favour of objective welfare assessments that simply ignore the claims of the individuals in question is not preferable" (2008, 133).
23. For those interested in observing this phenomenon first-hand, the website for L'Arche USA (https://www.larcheusa.org) is a good place to start. This website contains a map with the locations of all the L'Arche communities in the United States, and one is likely to find examples of flourishing lives at any of them. For those who would prefer to read about it, countless stories of good disabled lives can be found in the works of Jean Vanier.
24. https://docs.house.gov/meetings/AP/AP07/20171025/106526/HHRG-115-AP07-Wstate-StephensF-20171025.pdf. Video of Stephens's testimony is available online. Thanks to Audra Goodnight for this reference.
25. It is worth noting that there is a difference between the ethical question of the value of disabled lives and the metaphysical question of what disabled individuals are by nature. I am focusing only on the former. Contra Reinders, there is no good reason, on a perfectionist framework, to think that disabled human beings are less than fully human in the metaphysical sense of possessing a human nature and belonging to the same natural kind as non-disabled human beings. Reinders himself admits as much in the end (see 2008, 101–4).
26. In contrasting Aristotelian rationalist perfectionism with Thomistic relational perfectionism, it should be noted that the difference between them is one of emphasis rather than inclusion. Aristotle includes a role for sociality and friendship in human flourishing, and Aquinas includes a role for rationality and intellectual goods. The main difference between them comes down to which powers and goods are considered the most important component of flourishing. Aristotle, along with most thinkers in the Aristotelian tradition, claims that human beings are social animals by nature and that relationships are part of a good human life. Indeed, many Aristotelians go so far as to say that sociality is necessary for human flourishing. But, at the same time, Aristotle and the majority of perfectionists maintain that intellectual and volitional goods are more valuable than social goods. This is the key difference between Aristotelian perfectionism and relationship-centered perfectionism.
27. Hereafter cited as ST. See especially ST I–II.1.
29. The relationship-centered understanding of human nature and human flourishing is not restricted to Aquinas or Christianity. It can also be found in other philosophical and religious traditions, including Judaism. The crucial importance of human sociality and personal relationships is emphasized in the Torah and in the work of thinkers like Martin Buber, Emmanuel Levinas, and Abraham Joshua Heschel. I am grateful to Rabbi Elliot Dorff for pointing this out to me in conversation.
30. One might worry that my explanation of disabled flourishing excludes autistic individuals because autism affects the social capacities and seems to prevent people from exercising their social powers and forming relationships. A full discussion of this complex issue is beyond the scope of this paper; but the way around this problem is to see that while autism is an obstacle to relationships in some ways, it does not wholly inhibit the exercise of the social powers or completely preclude the formation of relationships. The reality is more nuanced. Autistic individuals are typically impaired in certain cognitive and social capacities, but it does not follow that they are impaired in social relations simpliciter. They find avenues of relating to others in alternative ways, which may be less efficient or less easy ways, but are still successful ones. The bottom line is that being autistic does not bar a person from flourishing. I am grateful to Eleonore Stump for a helpful discussion of this issue.
32. This research program is a branch of social psychology devoted to the scientific study of happiness, well-being, flourishing, or optimal human functioning. Its origins can be traced to the "positive psychology" movement that began around the year 2000 and attempted to shift the focus in psychology from negative phenomena—treating mental illness and disordered human traits and behaviors—to positive phenomena—understanding and fostering happiness and well-being, positive human traits, and the institutions that support human flourishing. This research program has exploded in recent years, and now there is a whole subfield that studies the psychology of well-being. For a helpful overview, see Alexandrova (2016).
33. As Carol Ryff and Burton Singer (1998) note, although psychologists defend competing theories of psychological well-being, there is universal agreement about the necessity and importance of interpersonal relationships for psychological wellness, optimal human functioning, and physical health.
34. I am aware that the view I am sketching here is incomplete and that much more needs to be said about the relationship between well-being and disability. For example, there is reason to think that some types of disabilities are intrinsically bad for individuals in some respects. I am omitting a discussion of these details for the simple reason that it is not possible to do everything in one paper. The important point for my purposes is that even if it turns out that some disabilities are inherently harmful, disability does not prevent a high quality of life and is compatible with human fulfillment.
35. For example, if one assumes an objective list framework of well-being and assumes that all of the basic prudential goods contribute equally to the well-being of a life, then one can defend the position that disabled individuals thrive by arguing that objective goods such as friendship or aesthetic experience are multi-realizable. Even if disabilities preclude the typical ways that humans realize goods, there are alternative, non-standard ways of participating in the same goods that are just as valuable. Asch and Wasserman employ this strategy and summarize it by saying that "human beings enjoy a fortunate redundancy in many of the capacities that are instrumental for, or constitutive of, valuable human goods and activities" (2005, 208).
36. A few alternative versions of perfectionism that are more pluralistic about the ways human goods can be prioritized within a flourishing life, and are more accommodating of human diversity and disability than Aristotelian perfectionism, are the capabilities approach of Nussbaum (2002), the virtue ethics approach of MacIntyre (1999), and the natural law approach of Tollefsen (2010). Thanks to an anonymous reviewer for encouraging me to mention the disclaimers and alternatives in this paragraph and for suggesting several of the references.
37. For the most well-known defense of this position, see Singer (2011, Ch. 7, especially pp. 162, 165, 177, 187).