Why Intellectual Disability is Not Mere Difference.

A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall-any negative impacts on welfare are due to social injustice. This article argues that Barnes's Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad-by itself it makes a person worse off, apart from a non-accommodating environment; (2) universally bad-it lowers quality of life for every intellectually disabled person; and (3) globally bad-it reduces a person's overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior-lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference.

My son David, now in his late twenties, is intellectually disabled as the result of a prenatal brain injury. His disability adversely affects his communication, performance, and functioning in all areas. David does not read or write, is nonverbal, cannot understand significant choices, and requires assistance with every aspect of daily life: personal hygiene, housekeeping, and health. He will never live independently and will need support services his entire life.A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. F.M. Kamm (2004, 233) asserts the bad difference view: the “lives [of disabled people] are worse than the lives of the non-disabled.” Elizabeth Barnes, by contrast, affirms the mere difference view: “being disabled is not something that by itself or intrinsically makes you worse off” (6). (In-text page numbers refer to Barnes 2016.) She (10) restricts her analysis to physical and sensory disabilities and is agnostic about whether it extends to intellectual disabilities (ID). In this paper I argue that a Barnesian Value Neutral Model does not apply to ID—while physical and sensory disabilities may be mere difference, ID is bad difference. I focus on congenital ID like Down syndrome or David’s periventricular leukomalacia, not acquired ID like traumatic brain injury experienced beyond childhood. Barnes grants that fetal alcohol syndrome is bad difference because of the bio-psycho-social problems it brings—this hints that she might consider other forms of ID bad difference as well (158). But whatever Barnes herself would say, I claim that it is worse to be ID than non-ID. I must assert at the outset that while people with ID are functionally disadvantaged, this does not imply that they are morally inferior—lower quality of life does not mean lesser moral status.

Barnes’ Position: Physical and Sensory Disabilities Are Mere Difference

I describe the Value Neutral View in detail in order to avoid mischaracterization and to frame the argument that it does not apply to ID. “Being disabled is,” Barnes says, “a way of being a minority with respect to one’s body, just as being gay is a way of being a minority with respect to sexuality. It is something that makes you different from the majority, but that difference isn’t by itself a bad thing” (6). In her view, “disability is mere difference, and yet may still be… (in a restricted sense) a harm.” And “one needn’t say that all the harms associated with being disabled are socially mediated or caused by social injustice (that is, one needn’t deny that disability might involve harms even in an ideal, ableism-free society) in order to maintain a mere difference view.” It is possible “both that disability is not in general something bad and that disability is bad for some people or in some circumstances” (7–8, emphasis in original). But overall, “disability, like other minority features, is (by itself) neutral with respect to well-being” (9).

What Disability Is

Barnes begins by clarifying the concept of disability. Naturalist accounts define disability as a departure from typical human functioning. The concept of typical functioning is not merely statistical—about how most people function. It is also theoretical—it assumes that biological organisms have a design that furthers the goals of surviving and flourishing (13–14). Barnes rejects such theories on several grounds.Naturalist theories overgeneralize, since many deviations from typical function are not disabilities. Swimmer Michael Phelps—who has an unusually long arm span and large foot size, and muscles that produce a small amount of lactic acid—is not disabled because his atypical function is beneficial (14). Nor is disability a departure from typical functioning that substantially affects daily life and significantly restricts daily activities—people with achondroplasia meet both criteria but are not disabled (15–17). Nor can we distinguish disability (intrinsic features like blindness that limit people) from injustice (extrinsic features like racism that limit people). Many limitations faced by people with disabilities are due to social arrangements, not biological malfunctions (19–20). It is also inadequate to attribute disability both to social barriers and to intrinsic features of persons—this, too, assumes a notion of typical function (21). It is lack of abilities in combination with other features, not lack of typical function alone, that constitutes disability (18). An infertile person who has no desire for children is not disabled—while their body departs from typical function, it has no bad effect on their life. Finally, naturalist accounts are normative (14). Typical functioning is proper functioning—and disabilities are negative departures from proper functioning that are assumed by definition to reduce well-being.Statistical accounts of disability as the lack of an ability most people have are also flawed. Most people can roll their tongue, but those who cannot are not disabled. Nor are disabilities the lack of a significant ability or multiple abilities most people have, which create a significant impact on daily life. There is a wide range of everyday tasks that a petite woman cannot perform, but she is not disabled (16–20).

Social accounts define disability by social, not biological, facts. The disadvantages of disability are entirely caused by unjust discrimination against people with impairments (24–25). Barnes is sceptical of social models because they ignore the biological conditions on which social mistreatment acts—they create a “disappearing body,” which becomes a contingent factor unnecessary for disability (36). But disability is more than social injustice—it requires having a body “with unique challenges and difficulties… Being disabled is not merely a matter of what your body is like, but . . . it is partly a matter of what your body is like” (37). Social models are also implausible because a society free of ableism would not be free of disability. Atypical function can have bad effects in the absence of prejudice—and it is a false dichotomy to attribute disadvantage either to social prejudice alone or to individual impairment alone (26–28).Barnes’s own solidarity model acknowledges the role of both society and biology. Disability is a social category that “people have found meaningful when organizing themselves in a civil rights struggle… to work for progress and change” (41–43). But disability is also a medical category: to count as a disability theory, the people for whom justice is sought must have “physically non-standard bodies” (46). Disability is “the application of social features [i.e., movements of solidarity] to objective features of bodies” (47).

How Disability is Related to Well-being

There are three possible relationships between disability and well-being: disability has a negative, positive, or neutral impact on quality of life. Barnes rejects the first possibility, since disability makes a person different but not worse off. She also rejects the second, despite celebrating disability pride. Instead, “disability is neutral with respect to well-being.” While overall neutral, its impacts on quality of life are “complicated” and “tricky” (54–55).

The mere difference view allows that disability is socially disadvantageous (56). Many people with disabilities are on average worse off than people without disabilities because of social attitudes and arrangements.

The mere difference view allows that disability involves the loss of some intrinsic goods (75–76). Particular aspects of life with disability can be difficult—but the loss of some goods does not mean that a person is worse off overall. Men lack childbearing abilities, but that does not reduce their well-being all things considered (57).

The mere difference view allows that disability by itself is responsible for the loss of particular goods (58–59). Not all the bad effects of disability are due to social organization (78)—even if we eradicate ableism, disability would have negative effects (62). A blind person will not see their loved ones’ faces even in an ideal environment.

Disability, then, can reduce well-being, involve the loss of some goods, and be intrinsically bad independent of social context (59). But the following bad difference assumptions are false.

Disability makes a person worse off because it involves the loss of intrinsic goods. This claim is false—being male does not reduce well-being, nor does disability (60–61).

Disability makes a person worse off because in a perfect society a person with disability would still have lower well-being than a similar person without disability. This claim is false—interpersonal comparisons of well-being are impossible because they involve “too many variables” as well as incommensurable values and experiences (64–65).

Disability makes a person worse off because, if we could remove their disability but keep the other circumstances of their life constant, we would very likely improve their quality of life. This claim is false—just as we cannot compare a person with disabilities to a different person without disabilities, we cannot compare a person with disabilities to themselves without disabilities. It may not be possible “to hold fixed someone’s personal and social circumstances while removing their disability.” Because disability impacts the entirety of a person’s life and identity, to remove it would be to change a whole set of activities, relationships, and experiences—making the hypothetical comparison incoherent (65–66).

The mere difference view rejects these formulations of the bad difference view. Barnes denies that disability by itself makes a person worse off overall. The relationship between disability and well-being is complicated rather than simple. Something’s “being a neutral feature is compatible with it being—in a restricted sense—something that’s bad.” That disability is neutral on the whole “doesn’t make its bad effects any less real” (79). A trait can, then, be locally bad (bad with respect to certain aspects of life) but globally neutral (not bad on the whole). The simpliciter claim is that a trait is bad if, because of having it, a person has a lower level of overall well-being than they would have without it (86). The combination claim rejects the simpliciter claim. “Disability, by itself, is neutral. But it can be… bad, depending on what else… it is combined with” (90). Having inflexible joints is neutral, but in combination with wanting to be a ballet dancer, it is disadvantageous (85–86)—and disability is neutral, but in combination with social injustice, it has a negative impact on well-being.

In summary, Barnes’s highly qualified Value Neutral Model claims that “disability by itself isn’t something that’s bad” with respect to well-being (97–98). “Disability is neutral simpliciter. It can sometimes be bad for you—depending on what (intrinsic or extrinsic) factors it is combined with… [It is] sometimes—perhaps always— …locally bad for you (that is, bad with respect to particular things)” (88)—and these disadvantages may be “fairly substantial” (105). Not all of these harms are social—some are natural and would occur even in a perfect society. But overall, disability is like sex, race, and sexual orientation. Being female, black, or gay are not, in themselves, bad differences; in the absence of sexism, racism, and heterosexism, it is not inherently bad to be female, black, or gay—these are mere differences (69–70).Barnes allows that disability reduces well-being because of how society treats people and can be a local bad that leaves someone worse off in particular aspects of life. Disability can be intrinsically bad (by itself it makes a person worse off, apart from a non-accommodating social environment)—but only in a restricted sense. Barnes denies that it is universally bad (it lowers quality of life for every disabled person) and globally bad (it reduces a person’s well-being overall). The difficulties of disability are individual (limited to particular persons) and local (limited to specific aspects of life). Disabilities are harms that make a person’s life more difficult at some points but are not “negative difference-makers” that make life worse overall (Barnes 2009, 339).

My Position: Intellectual Disabilities Are Bad Difference

Barnes claims that “most disabilities are mere difference” (103). She acknowledges that her argument may be limited in scope: it is perfectly possible “that some traits that we class as disabilities are not themselves neutral…., that there are particular disabilities that are bad simpliciter” (102). Consider Kelly, a woman with profound ID (Reinders 2008, 20–23). She sits in a wheelchair, staring into space—seldom responding to staff who care for her. Kelly has no apparent self-awareness or purposive agency. She cannot engage in important elements that characterize human lives—productive communication, significant relationships, and meaningful activity. Profound ID damages the psychological capacities that are necessary for achieving valuable human goods, which are available to Kelly only in a very diminished way. I take it as true that Kelly’s ID is bad simpliciter—it has a significant negative impact on her whole life and is bad not only because of social arrangements but because of intrinsic deficits that, by themselves, make her worse off overall. Kelly would have a higher level of well-being in a counterfactual scenario where she is not disabled. Her ID is unlike sex, race, and sexual orientation, features that truly are mere differences.

We cannot, however, just assume that a particular disability is bad simpliciter. “To have warrant for such a claim,” Barnes says, we “need to have good reason to think that the disability would be bad even in the absence of ableism.” But “a world without ableism is a very, very different world from our own [and so] evidence that a particular disability would be bad simpliciter even in such a world doesn’t look easy to come by” (102). Moreover, empirical research shows that people with disabilities report positive quality of life—and philosophical reasoning suggests that intuitions about the badness of disability are unreliable since they are formed in an ableist culture (70–73).We need, then, an argument that ID is bad simpliciter: I make that argument in what follows. (For other responses to Barnes, see Andric and Wundisch (2015), Bognar (2016), and Kahane and Savulescu (2016).) I adopt Barnes’s definitions that a trait is bad if it has a negative effect on well-being, is locally bad if it is bad with respect to certain aspects of life, is globally bad if it has a negative effect on overall well-being, and is intrinsically bad if by itself it has disadvantages (80). The “Barnesian analysis of ID”—a construct that extends the Value Neutral Model to include ID—affirms that “having [ID] is something that makes you different, but not something that by itself makes you worse off” overall (78). ID may be bad because of social injustice (i.e., in particular societies), certain desires (i.e., for particular individuals) and specific losses (i.e., in particular respects). But the fact that ID is bad in these restricted ways does not make it bad simpliciter.I reject this analysis as implausible. The disadvantages of ID, I argue, are unrestricted—intrinsic, universal, and global. ID is a simple bad—it is bad in all circumstances, for all people, and in all areas of life. But ID is also a complicated bad—its effects on well-being, while negative, vary significantly depending on the person’s impairment and life circumstances (Gould 2020a). The Barnesian claim that ID is a restricted harm but not bad simpliciter rests on the combination harm claim (ID is bad when combined with certain desires but not bad for all life plans—it is a local harm that is bad for specific individuals and in particular respects, but not bad universally and globally). First, however, I challenge the testimony argument (ID is not bad because people with ID report good quality of life) and elaborate the social harm claim (ID is bad socially but not bad intrinsically).

The Testimony Argument and Why It Is Unsound

I begin with an argument that, if tenable, refutes my claim that ID is bad difference. Barnes supports her view that physical and sensory disabilities are mere difference by citing reliable, positive testimony from people with those disabilities. Since they experience similar levels of life satisfaction as people without disabilities, these conditions are neutral with respect to well-being (97–99). To discredit their assessment of their own well-being as self-deception or adaptive preference is demeaning and unjust. A parallel argument from ID-positive testimony states that since people with ID report good quality of life, ID is mere difference. I do not doubt their experience, but it does not support the claim that ID is neutral concerning well-being. Research finds that people with ID are as happy, on average, as people who do not have ID. Brian Skotko’s research team (2011), for example, states that ninety-nine per cent of people with Down syndrome are content with their lives. We should not dismiss these good quality of life ratings as delusional. Numerous studies show that the link between impairment and well-being is tenuous and that people without disabilities are poor at accurately judging the quality of life of people with disabilities (Amundson 2005; Ubel et al., 2003). Being unable to function in a typical manner does not mean being unable to flourish—life with ID can lack important features without falling below zero on an integer line of welfare. There is no way to determine that David’s cousin Matt, who graduated college, is married, owns a home, and works in marketing, has a better life than David, who lives in a group home, attends a day training program, plays Special Olympic sports, and volunteers at a gardening project. Their different lives are incommensurable—David’s life satisfaction is different from, but perhaps not less than, Matt’s. There are two ways to measure quality of life. Hedonic happiness is a matter of internal experience (a person’s satisfaction with their life), while eudaimonic happiness involves external standards for a good life (how someone’s life is actually going). Subjective theories of well-being emphasize pleasing sensations and desire fulfilment, while objective theories require participation in substantive goods like meaningful relationships and worthwhile activities. Dan Brock (2005, 70) claims that well-being “includes the person’s own subjective assessment of or happiness with his [or her] life as well as objective components such as accomplishments, personal relations and self-determination.” Jonathan Glover (2006, 95) agrees that there are two strands to a good life: happiness (a subjectively contented life) and flourishing (an objectively rich-in-human-goods life). Well-being—exercising human capacities to actively pursue a life of varied activities and experiences—requires more than feeling happy. A neo-Aristotelian account claims that flourishing consists in a bundle of basic goods, given in human nature, such as the means of subsistence, pleasurable experiences, personal relationships, and meaningful activity (work, rest, play).1 These are constitutive components of a good life, and a person’s life goes better if it includes more of them and worse if it has fewer. People with ID report subjective life satisfaction—they also enjoy good objective quality of life. Chris Kaposy (2018, 178) notes that “when researchers ask [them] what makes their lives go well, they tend to discuss the sorts of things in objective list theories, such as friendships, family life, enjoyable and rewarding activities, rather than describing a good life in terms of hedonistic sensations or subjective desire fulfillment.” David Wasserman and Adrienne Asch, 2014, 148–149) agree: “the life satisfaction reported by people with disabilities does not appear to be based primarily on the experience of simple pleasures or the satisfaction of modest desires…. Rather, they describe what they do with their lives”—their activities, achievements, and relationships.

The issue concerning ID as mere difference, however, is not whether people with ID have subjectively or objectively good lives—it is whether they could have had objectively better lives without ID. It is reasonable to think they could have. The fact that David cannot care for himself, make life choices, or function independently does not mean that he is unhappy. It does mean, however, that he misses out on important experiences and significant opportunities—even if he does not realize it. His life is worse objectively even if not experienced as such.2The bad difference view does not entail that people with ID have poor quality lives, and the fact that they have good quality lives does not make the mere difference view true. All the bad difference view requires is that people with ID could have better quality lives. The relevant concept of harm is counterfactual—as Melinda Roberts (2019) says, “a person P is not harmed at a given world w unless there exists some alternative world w* such that P has more well-being at w* than P has at w.” ID makes a person worse off relatively even if not badly off absolutely. Particular mental abilities are necessary for achieving the relationships and activities which constitute flourishing—so ID frustrates, in complex ways, having a full life. As Peter Byrne (2000, 117) puts it: “impairments in cognitive functioning cut [people] off from doing many of the basic things other human beings can do: things like speaking, relating to others, coping with novelty, reading and writing.” Intellectual abilities are not an irrelevant trait like eye colour—and ID is a disadvantage even if it does not create subjective distress or objective ruin. The bad difference view is not based on a broad, unjustified generalization that people with ID have lives of low quality. It only assumes that they have lives of lower quality, as measured in terms of objective components of well-being, than they could have if they did not have ID. This fact—not negative stereotypes about life with ID—grounds the view that it is detrimental to flourishing.

It might be objected, as Barnes does, that we should be sceptical of counterfactual comparisons because they involve numerous variables and incommensurable values (64–66). True: comparative assessments are difficult. Yet experts do compare categories of ID. The American Psychiatric Association (2013) identifies mild, moderate, severe, and profound functional limitations. The American Association on Intellectual and Developmental Disabilities (2015) looks at intensity of needed supports—intermittent, limited, extensive, and pervasive—to classify severity. The burdens of ID come in degrees: mild conditions are mildly bad while profound conditions are profoundly bad. Kelly would be better off having mild ID and David worse off having profound ID.If evaluation of alternative possibilities cannot be made, then thought experiments like Derek Parfit’s (1984, 245) are meaningless. Child is born with moderate cognitive disability, which is curable by a safe medication. Mother has two choices to compare: (1) give the medication and remove ID or (2) refuse it and retain ID. The Barnesian model—in which ID is neutral with respect to well-being—opts for 2. The non-interference principle says that “you shouldn’t go around making substantial changes to people’s lives without their consent” (147). It is especially wrong to change identity-determining traits that cause a child to be a different person (150). But if Mother chooses option 1, this is not an unjustified interference. The beneficence principle, which directs us to improve the lot of others, assumes that we can—in a rough way—compare possible futures. There is reason to think that in option 1, Child will enjoy valuable experiences, projects, and activities that he will be deprived of in option 2. While they may be equally happy subjectively, Child 2’s quality of life will be worse objectively—and so we criticize Mother’s choice not to cure ID. (I leave aside questions about identity—about whether Child cured of his all-affecting ID would be himself better off or a different person better off (Barnes 2016, 64–66).) Parental grief at the prenatal diagnosis of a disabled fetus or the birth of a disabled baby are also due to comparison between the anticipated child and the actual child. Parents compare the disabled fetus or infant to the non-disabled baby they imagined—their shock and disbelief, sadness, and anger, are responses to this comparing of their dreams or hopes with reality. I grant that counterfactual comparisons are difficult to evaluate because of epistemic uncertainty. That said, it appears that alternative world comparisons can be made and that they undermine the mere difference view of ID.

It might also be objected that it is able-centric to take the voice of non-disabled people like myself as authoritative on life with ID and to discount the self-reported well-being of people with ID. I, as an able-minded person, inhabit a world very different from theirs. This epistemic opacity makes me unable to enter their perspective, and so people with ID who can speak about themselves have an epistemic advantage over me. As Ron Amundson (2005, 112–113) points out, disabled individuals know their own lives, while non-disabled people have never experienced life with disability. So

… who is judging from ignorance? On what grounds [do we] favor the opinions of nondisabled over disabled people, when the issue… is the quality of life of disabled people? ...Why should the opinions of nondisabled people be epistemologically privileged over those of disabled people? …The fact that we can trump subjective quality of life judgments with judgments that we believe are objective does not mean that we are correct when we do so.

My argument appears ableist—indeed arrogant—in undervaluing the testimony of people with ID and taking myself and my cognitively abled peers to be better epistemically situated to know their quality of life.True: as Amundson (2005, 112) says, “the testimony of disabled people about their lives has been dismissed in favour of nondisabled ‘experts’ for a very long time.” I agree with Sara Goering (2008) that there is a presumption in favour of believing their claims about quality of life with disability. Individuals with ID have epistemic privilege over me in terms of understanding their own life experience. But I, it seems, have epistemic advantage in understanding what they are missing. The case of the happy slave who reports a good quality of life but nonetheless should be thought to have a diminished life suggests that a person can feel happy when things are going badly for them (Amundson 2005, 111–113; Brock 2005, 69–70; Goering 2008, 131–133). We have good reason to question his reported satisfaction, since slavery reduces quality of life even for individuals who do not recognize the fact. As Amundson (2005, 111) puts it, “we (the third-person judges) can understand a slave’s failure to recognize an injustice… that outside observers (like us) can perceive. We recognize oppression, and the possibilities of liberation, in ways that slaves…do not. Our superior knowledge allows us to trump their subjective judgments with our objective ones.” It is certainly possible that third-person judgements of quality of life which differ from the judgement of the subject are correct, and that non-disabled people have superior knowledge about some aspects of the lives of people with ID. This verdict is not simply a reflection of the stigma of ID or an expression of ableist prejudice. There is, instead, an epistemological basis for thinking that I know better about their lives than David or Kelly do—indeed, that is the argument of this paper. The happy slave has an epistemically-privileged inside position—he can see that he is happy. But non-slaves have an epistemically-privileged outside position—they can see that he is a slave. While we should not ignore or under-emphasize self-reported quality of life—to do so would be epistemically unjust—neither should we absolutize or over-emphasize it. Consider Thomas Nagel’s (2010, 181) scenario in which “an intelligent person receives a brain injury that reduces him to the mental condition of a contented infant, and [where] such desires as remain in him can be satisfied by a custodian, so that he is free from care. Such a development would be widely regarded as a severe misfortune…for the person himself.” Even though he experiences no transition costs and is subjectively happy with a full stomach and a dry diaper, the deprivation in what he can do makes it objectively diminished. While he cannot see the loss from inside, we can see it from outside. Just as the happy slave may report being contented but would have a better life if he were not mistreated, so we cannot infer that ID is not bad from the fact that people with ID report meaningful lives. Challenging the happy slave is not liberty-centric in a problematic way, nor is reframing ID-positive testimony improperly able-centric. It is unjust to discount the views of people with ID as inaccurate subjective accounts of life satisfaction, but it is not unjust to claim that their perspectives are incomplete as to objective quality of life. Just as outsiders are qualified to condemn Nazi morality as inferior, so able-minded persons are qualified to judge that someone with ID—Kelly or Nagel’s deprived adult—has a less full life.3

ID Is Intrinsically Bad: Why the Social Harm Claim Is False

The Barnesian model says apparently contradictory things about disability. On one hand, it acknowledges that some limitations experienced by people with ID do not result from oppressive environments (20). “One needn’t say that all the harms associated with being disabled are socially mediated or caused by social injustice (that is, one needn’t deny that disability might involve harms even in an ideal, ableism-free society).” If we eradicate prejudice and provide full support, ID will still have negative effects (62). On the other hand, it equates ID with being gay—the harms of both are due entirely to social attitudes, not the conditions themselves. In a just society there would be nothing worse about being gay or having ID (56).The harms of ID have three axes of variation. They are (a) social (caused by external environments) or natural (caused by internal malfunctions), (b) individual (relative to specific persons) or universal (applicable to all persons), and (c) local (restricted to particular aspects of life) or global (affecting all areas of living). Each of the first disjuncts makes ID contingently bad (bad in some circumstances, neutral in others)—each of the second makes it necessarily bad (bad in all circumstances). The tensions in Barnes’ view may be reconciled by allowing that the disadvantages of ID can be (1) natural, individual, and local or (2) social, universal, and global—but cannot be (3) natural, universal, and global. This claim, I think, is false.The social harm claim asserts that ID is bad socially but not intrinsically. The difficulties faced by people with ID are partly the product of ableist social attitudes and political decisions that exclude them from public life and limit access to opportunities and services. Many people with ID experience loneliness, isolation, discrimination, and lack of support, which diminishes their well-being (Gould 2020b). A Barnesian analysis grants that an exclusively social model of ID is not plausible. Some of the limits which ID brings hold in all circumstances. Kelly’s multiple disabilities disrupt reasoning, communication, voluntary activity, and self-awareness—they prevent her enjoying a life of significance in any society. Given his cognitive limitations, David will never do certain things regardless of social adjustments, even if he can do other things with proper support. It is true, as Barnes claims, that “a world without ableism is a very, very different world from our own” (102). And yet, as Ronald Berger (2013, 28) points out, “there are practical disadvantages to impairments that no amount of environmental change can entirely eliminate.” If some hardships of ID would occur in a perfect environment, then they must be due to intrinsic features of the body. That David has brain damage, experiences limitations in functioning, and requires assistance with all aspects of daily life are natural realities separate from social setting. Despite rejecting naturalism, the Barnesian model acknowledges that people with ID have “non-standard” minds (46) with “unique challenges and difficulties” (37). But if there are non-standard (or atypical) minds, then there are standard (or typical) minds. The Barnesian view, then, cannot avoid something like a typical function model. There are natural features which define ID—medical diagnoses (like Down syndrome), psychological facts (an IQ of less than 70), and functional deficiencies (in everyday activities). Internally caused disadvantages of ID remain after we subtract externally caused harms. Ron Amundson and Shari Tresky (2007) call these unconditional disadvantages (they occur irrespective of social arrangements and are contingent) as opposed to conditional disadvantages (which are caused by social organization and are inevitable). The extent of disadvantage is determined both by biological impairment and social context. A person with a moderate impairment like David’s experiences less disadvantage—someone with a profound condition like Kelly’s experiences more disadvantage. If society is accommodating, they experience less disadvantage—if it is non-supportive, they experience more disadvantage.The Barnesian model affirms that ID is intrinsically harmful (not bad simply because of social arrangements). It is also universally harmful (bad for everyone who has it) and globally harmful (bad across all domains of life). I now turn to these consequences which the Barnesian model denies.

Why the Combination Harm Claim Is False

The Barnesian analysis acknowledges that there are intrinsic harms to ID but insists that these only occur when combined with particular life goals. ID can be intrinsically bad “depending on an individual’s hopes, dreams, desires and plans” (96). Call this the combination harm claim. If ID is bad depending on what it is combined with, then the relationship between ID and well-being is contingent in two ways: it is bad relative to particular people (i.e., individually) and to particular aspects of life (i.e., locally). These assertions are implausible: ID is bad for all people (i.e., universally) and in all areas of life (i.e., globally).

ID Is Universally Bad: Why the Individual Harm Claim Is False

The individual harm claim makes the relationship between disability and well-being conditional to specific persons. Infertility is bad if someone wants children—but not otherwise (18); joint inflexibility is bad if a person wants to dance ballet—but not for a runner (85–86). In the same way, ID is individually bad when combined with particular desires that only some people have but is not universally bad for all affected individuals.It is true that ID has degrees of badness and that its specific badness depends on what it is combined with—when paired with a loving family or just society it is less bad, when paired with loneliness and social indifference it is more bad. But ID is bad either way—it is bad in combination with all plans of life, not just some. Consider an analogy. If poverty is contingently bad, then being poor is bad for specific people depending on what it is combined with—for those who want luxury it is bad, for those content with deprivation it is neutral. This is implausible, since a decent minimum of material resources is necessary for anyone to flourish. Ultimate interests are individual goals like having children or dancing ballet. Welfare interests, by contrast, are necessary means to ultimate goals; they are inherent in human nature and common to all people. External welfare interests include material resources—internal welfare interests include mental abilities. When welfare interests are diminished, any person is seriously harmed because their entire set of interests is damaged (Feinberg 1984, chapter 1).While ultimate interests are relative to particular individuals, welfare interests are universal to all persons. Natural needs are essential—something that a person cannot do without, something they must have. Needs are conceptually related to harm and welfare. To say “A needs x” is to say “A will be harmed without x”—and so the statement “A needs x but it would not be bad for A to lack x” is a contradiction. Either we secure our natural needs, or we are deprived of valuable aspects of living (Brock and Miller 2019; Thomson 1987). (Martha Nussbaum (2006) makes the same argument using the concept of capabilities.) Since everyone has the same basic needs, material resources are a necessary means to living well for everyone. This is why poverty affects all poor people negatively. There are, of course, degrees of poverty with different impacts: modest poverty affects well-being moderately while absolute poverty affects it profoundly. But either way, people who cannot afford life’s necessities report significantly less well-being than those who can (Haidt 2006, 88–89). Adequate material resources are necessary for anyone to flourish, so poverty is universally bad. In a similar way, primary intellectual abilities are resources necessary for flourishing applicable to all persons.4 Material goods and cognitive abilities affect everyone—they are unlike joint inflexibility which affects only some people. The desire to dance is a very specific desire and so flexibility is a very specific good. The need to function intellectually and adaptively is, by contrast, universal and basic. Because mental abilities are a primary good for every person, ID is a universal bad—like poverty, it disrupts the lives of everyone with it. While ID is bad simpliciter, its negative impacts are complicated. I have noted that in combination with loneliness or prejudice, its difficulties are aggravated, and with a caring family or just society, they are mitigated. That said, all people with ID are disadvantaged. Kelly has more disadvantages than David—the negative impact of her profound ID is worse than that of his moderate ID. Both are disadvantaged, but to different degrees. ID could, of course, be universally bad but not globally bad—it could affect all people with ID negatively but not affect all aspects of their lives negatively. I now challenge this notion.

ID Is Globally Bad: Why the Local Harm Claim Is False

The Barnesian model acknowledges that there are intrinsic harms to ID but insists that these are individual harms that occur only to particular persons or local harms that impact persons only in specific respects. Having argued that ID is not simply an individual bad, I now claim that it is not simply a local bad but a global bad that negatively impacts all aspects of life.The Barnesian model denies that we can reason as follows: Ability X is good; therefore, to lack ability X is to be worse off (94). But “good” in the premise has two different meanings. Suppose X is a secondary good like the ability to bear children: men, who lack this feature, are not worse off overall. But suppose X is a primary good like the ability to access material necessities: people in poverty, who lack economic resources, are worse off overall. Or suppose X is intellectual abilities: people like Kelly and David, with limited cognitive capacities, are worse off overall.Joint inflexibility may prevent the achievement of particular goals like ballet dancing but does not lower quality of life overall—it is a local harm. Material resources, however, are a primary good necessary for any set of life goals. Poverty is globally bad—it negatively affects all aspects of life. ID is similar—it disrupts all life plans, not just some particular desires. While flexibility is a specific-purpose good, intellectual abilities are general-purpose goods. Alan Buchanan et al. (2000, 167) put it well: intellectual abilities

… may be thought of as a general-purpose means—useful and valuable in carrying out nearly any plan of life or set of aims that humans typically have. [They are] a “good” not only from a distinct perspective or plan of life that some may adopt but many others may reject. … [They] can be thought of as a “natural primary good” analogous to… “social primary goods”—in each case, general-purpose means . . . valuable in carrying out nearly any plan of life… [The] loss of a general-purpose capacity . . . significantly diminishes the range, and makes more difficult the pursuit, of life plans that humans value.

ID affects the capacities necessary for the personal relationships and meaningful activity which are elements of living well—it lowers overall well-being, not just one domain of well-being. David lacks specific abilities—he cannot play the guitar because he lacks the intellectual ability and motor coordination; this inability does not reduce his well-being overall. But David also lacks general abilities—he cannot read, speak, or count and has difficulty with problem solving, working memory, attention management, proper judgement, and other mental tasks. He cannot communicate, reason, plan, or choose effectively—and these limitations negatively affect his ability to achieve an entire range of life goals. During childhood, David was diagnosed with pervasive developmental disorder, a condition in which multiple basic functions (intellectual, social, and communication) are disrupted. “Pervasive” means that something is present throughout every part of an entity—and David’s dysfunctions affect every aspect of his life.“Practical reason and choice are extremely important capabilities,” Nussbaum (2008) says. “They have an architectonic function, pervading and organizing all the others.” And so cognitive limitations have a cascading impact on well-being, causing a cluster of negative effects on quality of life. Jonathan Wolff and Avner de-Shalit. (2007) argue that drug addiction is a corrosive disadvantage where a deficit in one domain spreads its effects to other areas, disrupting many activities and states of being. Self-control, by contrast, is a fertile functioning where an achievement in one area brings further benefits elsewhere. ID results in corrosive disadvantage—it causes additional disadvantages to core elements of well-being. Barnes acknowledges that Fetal Alcohol Syndrome, for instance, involves “a complex range of biopsychosocial problems” (158) that are tightly interwoven. Typical cognitive abilities, by contrast, are a fertile functioning that increase other capabilities. Intellectual functioning is multidimensional, and so ID is also multidimensional—it impacts all life domains: IQ, adaptive behaviour, health and wellness, community involvement, social relationships, and home life (Schalock 2013). Being unable to communicate in ways that others understand, for example, can upset David. When frustrated, he sometimes acts out with non-compliant behaviour and gestural threats. Because of his somewhat unpredictable actions, staff at his vocational program are hesitant to include him in community-based volunteer and recreational activities—which isolates him in a segregated work centre. Because it disrupts David’s well-being, family and professional caregivers continue to work on helping him identify emotions and communicate effectively. We also continue to advocate for one-on-one support from a staff person dedicated solely to assisting him.

ID interferes with two sets of general-purpose abilities. Limited executive function and adaptive behaviour are defining features of ID—and the disadvantages they cause are not restricted to one area but impact the totality of a person’s life. Executive functions are mental skills that enable individuals to control thoughts, emotions, and actions—to pay attention, organize, plan, and self-monitor—and thus to manage life tasks of all types (Cooper-Kahn and Dietzel, n.d.). Adaptive behaviours are cognitive skills necessary to meet the demands of everyday living—self-care, self-direction, communication, home living, functional academics, community integration, and health and safety (Reynolds et al., n.d.). A person with deficits in these conceptual, practical, and social skills needs significant assistance with activities of daily life.David’s brain damage adversely impacts his executive functioning and adaptive behaviour in all areas. His nonverbal vocalizations, physical gestures, and iPad chatter are often incomprehensible to all who do not know him well. He has no literacy skills and does not grasp basic concepts like time and money. He depends on caregivers for assistance to prepare food, bathe, and take medications. David cannot meet his own basic living needs. If he loses bowel control, he cannot wash himself clean; he cannot care for himself when sick; he cannot prepare food, even microwave pizza, without direction; he has no concept of climate so may not choose weather-appropriate clothes; he cannot perform oral hygiene sufficiently to prevent gum disease. Nor can David meet his own quality of life needs. Without caregiver support he would sit at home all day playing computer games rather than interacting with other people and participating in structured activities. His inability to master basic life skills creates what Havi Carel (2014, 243 and 249) calls “a complete form of life” that is disadvantaged. David’s ID is holistic, all-pervasive, influences every aspect of living, and impacts his entire being-in-the-world. While I do not want to overstate the value of practical independence, and while I acknowledge the inherent vulnerability of the human condition and the virtues of acknowledged dependence (MacIntyre 1999), it is true that a lack of personal autonomy creates disadvantages in modern society.The Barnesian model grants that the lived experience of ID can be frustrating and have difficult aspects. But people with ID are not worse off overall because some things are hard: “disability is not in general something bad” (7). This is implausible. ID is not neutral concerning well-being, and we must be realistic about the global challenges it brings. Inflexibility is a restricted bad because it affects fewer and less central aspects of life. ID is an unrestricted bad that impacts the entirety of a person’s life, a whole set of activities, relationships, and experiences. ID is global bad difference—it is detrimental overall even if not devastating.

Objections Considered

My claim that people with ID are necessarily worse off is controversial, so I conclude by addressing several objections to the entire argument of this paper.

First, it might be thought that I paint with too broad a brush since the form of ID, as well as contextual factors, make a difference in how bad ID is. There are variations between types of ID—Fragile X, Down syndrome, autism, and other diagnoses each have varying impacts on intellectual and adaptive functioning. And there are variations within types of ID—Down syndrome, for example, comes in different degrees and with diverse effects on mental abilities. Because ID is a heterogenous category, the impacts of ID on well-being are complex—ID is not a single category that marks a bold line between a good life and a not-as-good life.True: I have acknowledged that the relationship between ID and well-being is complicated by biological condition, social environment, and personal temperament. But the fact that the disadvantages of ID are individualized does not mean that they are not generalized. Every person with ID is disadvantaged in his or her own way —but each is disadvantaged (Gould 2020a). People with moderate ID like David often cannot meet their own basic needs or perform in important domains of life. People with profound ID like Kelly often are incapable of controlled movement, thought, speech, and self-awareness—some never walk, talk, think, eat, see, or hear. While the degree of harm differs (Kelly is deprived of more good things than David is), its scope is the same (ID compromises all domains of well-being for both of them).

Second, it might be objected that empirical evidence indicates that people with ID experience good lives—they have meaningful relationships, enjoy engaging activities, and make social contributions. David rides his recumbent tricycle hundreds of miles each summer, participates in a gardening project, and plays several Special Olympics sports. This positive quality of life suggests that well-being should not be defined in terms of conventional accomplishments like college, marriage, and career (Kaposy 2018, 41–44).True. But there are basic goals—principal human activities and everyday life tasks—that people with ID often cannot perform adequately. Even if David need not meet sophisticated goals in order to flourish, his inability to meet his own simple needs of daily living compromises his well-being. The fact that ID is bad does not mean it is tragic. I do not wish to perpetuate simplistic assumptions about the kind of life a person with ID experiences or add to unexamined stereotypes that paint ID as poor quality of life. But nor do I wish to pretend that ID is irrelevant—like being left-handed—when it is not.It might also be thought that the well-being enjoyed by David indicates that my argument only applies to profound ID like Kelly’s. The goods I list—meaningful activities and relationships—are both possible and actual for David and many others, and the kinds of profound ID that eliminate meaning almost entirely are very rare. True. But this does not mean that less severe ID is not disadvantageous. David’s ID is bad for the same reason as Kelly’s—it interferes with basic functioning and disrupts well-being, but to a lesser degree. Even mild ID is bad—it, too, impacts well-being, but by an even smaller amount. The reasons for thinking that profound ID is bad generalize to all ID: it impedes achievement of important goods—to varying degrees, but always negatively (Gould 2020a).

Third, it may be objected that I rely on ableist assumptions about the accomplishments that constitute a worthwhile life, and that my position is intelligist—it makes intelligence and practical independence essential to well-being, with the result that people with ID have less prospect for a satisfactory life (Vehmas 1999). Disability scholars sometimes contrast two rival views of human flourishing. According to the intellectualist view, rationality is the human function. Mental abilities are necessary for the purposive action that constitutes flourishing, and so people with ID have reduced well-being. According to the relationist view, relationality is the human function. Quality of life depends on being in relationship with others, which means that people with ID need not have lower well-being. Eva Kittay (2019) and Barbara Schmitz (2014), for example, argue that human beings have non-cognitive functions (like emotional responsiveness, social relationships, and aesthetic appreciation) in addition to cognitive functions.True. But while these non-cognitive aspects do not require narrow rationality (specific abilities of reasoning, logic, and problem-solving), they do depend on broad rationality (general mental tasks like long-term memory, sustained and selective attention, auditory and visual processing). Because cognitive function is a supporting element of all human functions, John Vorhaus (2018, 17) says, “rational and non-rational capacities do not come apart.” Psychological abilities make social connections possible, and since some intellectual competence is a precondition of meaningful relationships, ID threatens them. While rationality is a plural set of abilities and while people with ID seldom have no rationality, those who are profoundly impaired like Kelly do not flourish relationally because they do not reason adequately. And while David enjoys rewarding relationships, he cannot establish deep connections involving self-disclosure and intimate conversation.5

Fourth, it might be thought that my claim that people with ID cannot participate fully in certain human goods is no different from other prejudices that were common in the past, like the assumption that gay people are unable to take part in the good of parenting.True: at first glance, my position appears identical to other forms of prejudice against historically marginalized groups. A deeper look, however, indicates that it is not. The “inability” of gay people to raise children was entirely socially constructed—there is no natural reason that they cannot be perfectly good parents. Indeed, children raised by same-sex couples are as likely as those raised by heterosexuals to be healthy, successful, well-adjusted, and securely attached to parents (American Psychological Association 2004). Any barriers to gay people parenting are based solely in prejudice. The inability of people with ID to flourish equally, however, is not entirely socially constructed. As argued, a society free of ableist injustice would not be free of ID and some of its disadvantages since functional limitations are due not simply to how society is organized, but to the impairments themselves. Disadvantages experienced by gay people are entirely due to discriminatory social arrangements—disadvantages of people with ID, by contrast, are due to both prejudicial social systems and inherent biological malfunctions. While the Barnesian model equates being gay and being ID, I do not. To assert that Kelly has less participation in certain goods of human flourishing is not the same as claiming that gay people cannot participate in the good of parenting.

Fifth, it might be thought that my argument expresses ableist prejudice against people with ID by assuming that typical minds are more desirable. I do, after all, devalue the cognitive deficits that ID brings and present mental abilities as a special kind of good. But if mental abilities are sine qua non conditions of human flourishing, then people with ID experience less objective well-being. That claim is ableist, since the I who judges is able-minded.True. I do take rational abilities as an indispensable part of human nature that contribute to survival and flourishing. While mental powers are not uniquely human, they are essentially human—personhood requires rational faculties. I take something like Mary Anne Warren’s (1973) human/person distinction to be correct, and I assume that well-being and quality of life require some degree of psychological capacity. The limiting case is a permanently unconscious individual who, given the complete lack of mental abilities, cannot participate (in a first person, experiential way) in any of the human goods. This suggests that intellectual capacities are profoundly part of who we are as persons, enabling activities that define us as the distinctive creatures we are. Even Kittay (2005, 126 and 129), who strongly defends the moral personhood of her severely disabled daughter, acknowledges that “Sesha’s life lacks many things that make my life rich.” Unlike a permanently unconscious individual, Sesha’s cognitive capacities, while diminished, allow her to participate in some aspects of the human good—to respond to her environment and other people, to be involved in activities and relationships, to enjoy music. But Kittay is ambivalent about whether “[Sesha’s] life contains less good in it than yours or mine”—she certainly seems open to the possibility that Sesha, while a full human person, lacks a full human life.To emphasize the value of cognitive abilities for flourishing is not to be ableist in an objectionable way. Consider a comparison with ethnocentrism—believing in the superiority of one’s cultural knowledge and values and using that frame of reference to judge the beliefs and behaviour of another culture, often in a negative way. Part of ethnocentrism is finding the ideas of another social group to be in error—we rightly do this when we judge Nazi death camps as morally wrong and tribal dances meant to bring rain as scientifically mistaken. The claim that our perspectives are superior is not troubling—we have good reason to think they are. What is problematic is demeaning people who hold those ideas—looking down on Nazis and rain-dancers, belittling them with disrespect. In the same way, using my perspective to assert that David’s ID creates a lack of certain objective goods is not unjustly able-centric. Ableism involves prejudice and discrimination—and that is no part of my position: I devalue ID, not people with ID.

Sixth, it might be objected that I fall into circularity by assuming the truth of what I seek to prove—that ID is bad difference. To define disability as (1) deviation from typical functioning that (2) by itself reduces well-being means that ID intrinsically reduces overall welfare. This begs the question by taking for granted as true the very point in dispute.True: it appears that I define ID as something that intrinsically lessens overall well-being. But in fact I make no such definitional move—instead, I infer 2 from 1. I define disability as the Americans with Disabilities Act does: a physical or mental impairment that substantially limits one or more major life activities. The World Health Organization, as well as advocacy groups like Union of the Physically Impaired Against Segregation (Boorse 2010, 58–59), distinguish (1) disabilities or impairments (i.e., limitations in functional performance) from (2) handicaps (i.e., disadvantages that restrict opportunities to achieve vital goals or participate in personal and social activities). I agree with Barnes that many deviations from typical functioning do not reduce overall quality of life—being a petite woman is not bad difference, despite the wide range of everyday tasks she cannot perform (16–20). Instead of defining ID as bad difference, I provide independent support—arguments, examples, and expert opinion—for the conclusion that the limitations which ID involves are disadvantageous. It is true, of course, that my denial that the Barnesian model applies to ID rests on controversial philosophical claims such as objectivism about prudential value (i.e., what is good for a person’s well-being).

Finally, it might be thought that my position—ID is bad difference—should be rejected because unacceptable clinical implications follow from it. At the beginning of life, genetic counselling is often slanted to favour abortion when a fetus tests positive for disability. This is because, as Wasserman (2015, 235) explains, “many health professionals . . . believe that being born with a disability is almost always damaging and often disastrous for the child.” Throughout life, ableism—inaccurate assumptions about quality of life of people with disabilities—exposes them to medical error and affects the quality of care they receive (Peña-Guzman and Reynolds 2019). At the end of life, doctors may prematurely attempt to place people with disabilities into palliative rather than curative programs. Michael Putman et al. (2016) report that “physicians [are] half as likely to recommend full medical treatment when the patient [has] severe cognitive deficits” and are much more likely to use Do Not Resuscitate orders. At the start of the Covid-19 pandemic, numerous states in the United States had rationing policies that deprioritized people with disabilities from receiving ventilators (Hellman and Nicholson 2020). Since these troubling consequences follow from belief that ID is bad difference, it cannot be correct. True: clinical decisions are often based on the belief that ID is bad difference. But medical ableism—the denial of rights by medical institutions and clinical providers to patients with disabilities, with the result that they often do not receive the care they need—does not follow from my thesis.6 We cannot infer that because people with ID are functionally disadvantaged, therefore they are morally inferior. Lower objective quality of life does not mean lesser moral status or decreased claim to medical care. The fact that ID is bad does not mean that people with ID are less worthy of respect. To repeat: there is an important difference between devaluing a trait (a person’s dishonesty) and devaluing a person (the individual themself)—and there is an important difference between devaluing Kelly and David’s ID and devaluing Kelly and David. David cares about his disabled life as much as Matt cares about his non-disabled life—they are morally equal persons. General claims about lower quality of life for people with ID do not justify disability-based selective abortion, denial of life-saving treatment, encouragement of assisted suicide, or discriminatory rationing of scarce resources (Gould 2019; 2020c; 2020d).

Concluding Remarks

Barnes claims that disability itself is neutral—a person’s life “doesn’t go better or worse” in virtue of being disabled (109). I have argued that the mere difference view does not apply to ID. While I recognize the variety of lives that people with ID lead, ID is not bad only in certain environments or in combination with particular desires and for specific individuals. It is intrinsically, universally, and globally bad—it negatively impacts all aspects of life for all people with ID in all social contexts.While the mere difference view expresses the value of people with ID, it is problematic. ID is seldom tragic, but even conditions like David’s involve what Tom Shakespeare (2014, 105) calls “inextricable disadvantage.” The Barnesian model concludes that ID is mere difference since it does not exclude a good life. The bad difference view, by contrast, claims that ID is detrimental to human flourishing by depriving individuals of possibilities they would have without ID. It is better to be unimpaired (like Matt) than impaired or less impaired (like David) than more impaired (like Kelly).