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Disabled Lives: Who Cares?

Kittay plausibly suggests that our political discourse is pervasively shaped by the idea of society as based on a contract for mutual advantage, an idea that has dominated political theory in the Western tradition. All social contract theories adopt a fictional hypothesis that appears innocent: the fiction of competent adulthood. The parties to the social contract are assumed, as John Locke wrote, to be “free, equal, and independent.”4 Contemporary advocates of social contract theory explicitly adopt such a hypothesis. For the American philosopher David Gauthier, people of unusual need are “not party to the moral relationships grounded by a contractarian theory.” 5 Similarly, the citizens in John Rawls’s Well Ordered Society are “fully cooperating members of society over a complete life.”6 And since the partnership envisaged is for the mutual advantage of the contracting parties, provisions for people who aren’t part of the bargain will be an afterthought—not part of the basic institutional structure to which they agree.

Kittay is right to concentrate on Rawls—not only because his theory is among the strongest the Anglo-American philosophical tradition has produced, but also because it is committed to removing the unfair influence of various “morally irrelevant” accidents of life and to promoting equal respect among citizens. Just as race, class, wealth, and even sex do not give one person greater worth than another from the perspective of the principles of justice that should underlie society’s basic institutions, so too, one would have thought, the facts that one person’s body is more dependent than another’s, or that one has a dependent aged parent, should not be sources of pervasive social disadvantage.

Kittay might have done well to observe that on this topic Rawls’s Kantian starting point is likely to give bad guidance. For Kant, human dignity and our moral capacity, dignity’s source, are radically separate from the natural world. Morality has the task of providing for human needs, but the idea that we are basically split beings, both rational persons and animal dwellers in the world of nature, never ceases to influence Kant’s ideas.

What’s wrong with Kant’s distinction? Quite a lot. First, it ignores the fact that our dignity is that of a certain sort of animal; it is a dignity that could not be possessed by a being who was not mortal and vulnerable, just as the beauty of a cherry tree in bloom could not be possessed by a diamond. Second, the split wrongly denies that animality can itself have dignity; thus it slights aspects of our lives (our bodily desires, our sensory response to beauty) that have worth, and distorts our relation to the other animals. Third, it makes us think of the core of ourselves as self-sufficient, not in need of the gifts of fortune; in so thinking we misrepresent the nature of our own morality and rationality, which are thoroughly material and animal themselves. We learn to ignore the fact that disease, old age, and accident impede the moral and rational functions, just as they impede mobility and dexterity. Fourth, it makes us think of ourselves as not subject to the effects of time. We forget that the usual human life cycle brings with it periods of extreme dependency, in which our functioning is similar to that of the mentally or physically handicapped throughout their lives.

Rawls’s contracting parties are aware of their need for material goods. But they are competent contracting adults, roughly similar in need. Such a hypothesis seems required by the very idea of a contract for mutual advantage.7 In conceiving of persons in such a way, as Kittay shows, Rawls explicitly omits from the situation of basic political choice the more extreme forms of need and dependency that human beings may experience. Although caring for people who are not independent is “a pressing practical question,” Rawls argues, it may reasonably be postponed to a later, legislative stage, after basic political institutions are designed.

Kittay is right to find this reply inadequate. Care for children, the elderly, and the mentally and physically handicapped is a major part of the work that needs to be done in any society, and in most societies it is a source of unfairness. Any theory of justice needs to think about the problem from the beginning, in the design of basic institutions.

Rawls’s deferral of the question of extreme dependency makes a large difference to his political theory, as Kittay shows. For his account of the “primary goods,” the things every society must arrange to distribute fairly to its citizens, is explicitly connected to his account of the capacities of “independent” citizens: it is said to be a list of what citizens need for their own lives, when they have the two “moral powers” (meaning, roughly, the capacity for instrumental reasoning and the capacity for ethical evaluation), as well as the capacity to be “fully cooperating.” Although such a list might possibly be expanded to include care during intervals of dependency such people are likely to experience in their own lives (although Rawls does not so expand it), it has no place for the needs of people who are never going to be independent. Rawls’s list of primary goods includes liberties and opportunities; income and wealth; and the social bases of self-respect—by which Rawls means institutional structures ensuring that all citizens are treated as having worth and dignity.8 But care during lengthy periods (or a life) of extreme dependency is never mentioned.

Still more questionably (and something not emphasized in Kittay’s argument), Rawls measures relative social position with reference to income and wealth alone, ignoring the possibility that a group that is denied dignity may not, as a class, be most deprived economically. Some handicapped people are economically disadvantaged and others are not; Sesha, Jeffrey, and Arthur are all relatively well-off. All encounter special problems in achieving self-respect that a just society ought to address.

Amartya Sen has made a related criticism of Rawls’s theory of primary goods: that it ignores the fact that people have varying capacities to convert income and wealth into the ability to function effectively.9 Take two people, one in a wheelchair and one not. If they are to have a similar level of mobility, a lot more will have to be spent on helping the person in the wheelchair. Moreover, a point that Sen does not emphasize, the expenditure will have to include ambitious social measures of a sort individual families, even well-off ones, cannot undertake on their own: building wheelchair ramps, ensuring that buses and trains have wheelchair access.

3.

Can a liberal theory of justice adequately address these problems? Kittay doubts it. She holds that Western political theory must be radically reconfigured to put the fact of dependency at its heart. The facts, she says, that we are all “some mother’s child,” and that we exist in intertwined relations of dependency, should be the guiding image for political thought. Such a care-based theory, she thinks, will be likely to be very different from any liberal theory, since the liberal tradition is deeply committed to goals of independence and liberty. Kittay supplies few details to clarify the practical meaning of the difference. She seems to believe that a care-based theory would support a type of politics that provides comprehensive support for needs throughout all citizens’ lives, as in some familiar ideals of the welfare state—but this would be a welfare state in which liberty is far less important than security and well-being.

Kittay is not altogether consistent on this point. At times she herself uses classic liberal arguments, saying that we need to remember that caregivers have their own lives to lead, and to support policies that give them more choices. While she rejects, in the abstract, solutions that emphasize freedom as a central political goal, the concrete measures she favors do not seem to have sweeping anti-liberal implications. She wants to restore and expand the Aid to Families with Dependent Children program, which was annulled in 1996, as well as expand the Family and Medical Leave Act of 1993. She advocates various educational measures aimed at promoting the dignity of the disabled, through a judicious combination of mainstream schooling and separate education (for those like Sesha). All these are familiar liberal policies, which can be combined with an emphasis on choice and liberty as important social goals. Kittay’s most controversial proposal, that of a direct non-means-tested payment to those who care for family dependents at home, clearly has, or could have, a liberal rationale: that of ensuring that these people are seen as active, dignified workers rather than as passive noncontributors.

We could reformulate liberal theory without adopting Kittay’s extreme theoretical alternative. Suppose we accept one of her suggestions, adding care during periods of dependency to a Rawlsian list of primary goods. Suppose we also make another change for which she expresses sympathy, conceiving of the entire list in Sen’s way, as a list of “capabilities” for various types of functioning. In other words, a society is assessed not by the sheer amount of income and wealth it gives people, but by the extent to which it has made them capable of various important activities—mobility, for example, or access to political life.

Suppose we add a further change that she does not mention, but one that seems desirable: we reconceive the list of primary goods as a list of the basic needs of citizens of all types, and not only those who have, to a “normal” degree, the mental and moral powers Kant specified. In other words, we substitute for the Kantian image of the citizen a more Aristotelian conception, thinking of people as animal beings with various needs to be able to function—including, but not limited to, the needs for care by, and connection with, others. At this point, it is worth noting, we have moved rather far from the social contract tradition and its basic idea of a bargain for mutual advantage.10

Suppose, finally, we add to the list of primary goods some items suggested by Michael Bérubé’s reflections on both what his son’s life requires and what it contributes. We say, that is, that all citizens need to develop imagination and the ability to recognize the humanity in one another—including those who have disabilities and unusual needs. Institutions promoting the “social bases of the imagination”—humane schools, public support for the arts—would have a place on the list, complementing institutions that foster self-respect.

Still, the redesigned theory is basically liberal. For it emphasizes that we want all people to have the chance to develop the full range of their human powers, at whatever level their condition allows, and to enjoy the liberty and independence their condition allows. Would we do better to reject this theory in favor of Kittay’s idea, jettisoning independence as a major social goal and conceiving of the state as a universal mother? To be sure, nobody is ever self-sufficient; the independence we enjoy is always both temporary and partial, and it is good to be reminded of that fact by a theory that also stresses the importance of care of dependent people. But is being “some mother’s child” a sufficient image for the citizen in a just society? I think we need a lot more: liberty and opportunity, the chance to form a plan of life, the chance to learn and imagine on one’s own.

These goals are as important for the mentally handicapped as they are for others, though they are much more difficult to achieve. Although Sesha will never live on her own (and although Kittay is right to say that independence should not be seen as a necessary condition of dignity for all mentally handicapped people), I can hope that Arthur will, and hold a job, and vote, and write his story. Bérubé, too, imagines his son writing a book about himself, as two adults with Down Syndrome recently have done.11 One day Jamie’s kindergarten class went around the room, asking the children what they wanted to be when they grew up. They said the usual things: basketball star, ballet dancer, fireman. The teacher wasn’t sure Jamie would understand the question, so she asked it very clearly. Jamie just said, “Big.” And his literal answer, said the teacher, taught them all something about the question. Bérubé too wants, simply, a society in which his son will be able to be “big”: healthy, educated, loving, active, seen as a particular person with something distinctive to contribute, rather than as “a retarded child.”

For that to happen, his dependence must be understood and supported. But so too must his need to be a distinct person and an individual: and at this point Bérubé refers sympathetically to the ideas of John Rawls. He argues that the concept at the heart of the Individuals With Disabilities Education Act (IDEA)—that every child has the right to an “appropriate education” in the “least restrictive environment” possible, based on an “Individualized Education Plan”—is a profoundly liberal idea, an idea about individuality and freedom. And thinking of the large differences between Jamie and Arthur helps us to see why this emphasis on individuality is central to respect. Jamie’s educational needs and Arthur’s are hugely different; any society that treated them as indistinguishable members of a “special education” class would be grossly unfair to both. One of the most important kinds of support that they both need is the support required to become adults who will make their own free choices, each in his own way. Insofar as Kittay suggests that we downplay or marginalize such liberal notions in favor of a conception of the state that makes it the parental supporter of the needs of its “children,” I think she goes too far, misconceiving what justice would be for both the disabled and the elderly. Even for people like Sesha, who will never vote or be able to write, doesn’t a full human life involve freedom and individuality, namely, a space in which to exchange love and enjoy light and sound, free from confinement and mockery?

4.

How, in practical terms, would a just society deal with such problems? Bérubé, like Kittay, discusses both the different images of dependent people and practical legal strategies to help them. An English professor accustomed to professional discussions of the “social construction” of various human categories, he writes that both the limitations and the value of that idea became much clearer to him as a result of his life with Jamie. Part of Jamie’s condition is clearly not socially created, and Bérubé gives a detailed genetic and medical account of Down Syndrome, with all its particular physical manifestations. But much of Jamie’s condition is social: Will he be called a “mongoloid idiot”? A “retarded child”? Or will he get a chance to meet other children as simply “Jamie,” a kid who is a little different, but then children are all different anyway—he’s just a little more so? Such changes in labeling make a difference, Bérubé argues, and he is a staunch defender both of medical intervention and of a concern for language that might be seen pejoratively as “political correctness.” Much of social justice, he argues, lies in the way we see and speak of one another.

Beyond good attitudes, though, we need good laws. And here both Bérubé and Kittay are worried. The progress that laws protecting the handicapped, such as IDEA, have made is fragile. It can easily be undone, particularly in a society determined to decrease the size of the public sector. Bérubé worries particularly about the current view that people who are not “productive,” in a narrow economic sense, are a drag on the whole society. Children like Jamie may soon be seen as luxuries that society cannot afford. Bérubé is also worried that in a competitive society such as ours, attending a regular classroom, which has been so important to Jamie, will be regarded as a waste of time, decreasing the more profitable learning time of other children. To this worry he responds that classrooms are not just for teaching skills: they are also for learning how to be a good citizen. And that means learning how to see the humanity of another citizen, whoever it may be. In that sense, Jamie has taught his classmates at least as much as they have taught him.

Bérubé sees complexity in the issue of “mainstream” versus special education. He and his wife have chosen for Jamie a combination of the two strategies. Special education can be indispensable to consolidate mastery and to give a child a sense of worth. And mainstream education, both he and Kittay agree, is crucial, since it shapes a society in which a wide range of human abilities are encountered every day as pretty normal, part of what being human includes. However, my sister, who used to be a staunch defender of mainstreaming, now opposes it, at least for children like Arthur, who look like other children and get teased because they behave oddly. After a month in a classroom with only other Asperger’s children, Arthur is for the first time starting to make friends with other children his age.12

But what about the people who take care of children with disabilities and elderly parents? Williams, like Kittay, sees the work of caring for dependents at home as a crucial issue affecting the social equality of women. Holding that women are often subtly coerced by social norms into shouldering the burden of caring for a dependent, she argues that any solution to that problem has three parts, which must operate together. One part is the reallocation of domestic responsibilities between men and women in the home. A second (Kittay’s primary concern) is the role of the state. The state may lighten the burden of people who care for dependents through a wide range of policies, including subsidized leave time, subsidies for special education and therapy through the school system, and the direct, non-means-tested payment that Kittay favors for the work of caring for a dependent.

But Williams emphasizes that the workplace should change as well. Through comparative data, Williams shows that in countries with a promising range of state policies (Sweden, for example), women still do most of the work of caring for dependents.13 The reason, she plausibly argues, is that men do not want to jeopardize their careers, or to be perceived as marginal part-timers. They aren’t against sharing domestic responsibilities, but they do not want their careers to pay the price that such a decision would now exact. For most jobs today, workers are expected either to work full-time and have normal opportunities for promotion or to accept greatly diminished opportunities for promotion if they work part-time. In some occupations matters are even worse: there is a macho competition to work long hours on the job, and anyone who refuses to work overtime is seen as unproductive.

All of these problems need much more attention, about the possibilities both of state action and of reorganizing employment. None of these books offers more than sketches of approaches that might be considered, and the writers have little hope that any change will be tried, unless we first have better information about one another, and better images of decent relations among citizens.

Thus I think Bérubé is right to suggest that the key to social justice for both the disabled and those who care for them lies in enlarging the imagination. If we regard our fellow citizens above all as parties to a mutually advantageous bargain, we will never see much of value in the permanently handicapped. And we will see value in the disabled elderly only by thinking of them as formerly productive people who deserve some recompense for that earlier productivity; this is surely not all that their dignity requires. Finally, if we see little value or dignity in dependent people, we will be unlikely to see dignity in the work done dressing or washing them, and we will be unlikely to accord this work the social recognition it should have. We will confront these problems well only if we see human worth in Jamie’s playful sweetness as well as in his brother’s traditionally valued gifts, in Sesha’s need to be dressed as well as in her parents’ ability to dress themselves. Thus Bérubé’s book, which can be read simply as a father’s detailed and often quite humorous story about the life of his son, actually has an important theoretical purpose. All the detail and the humor are there to help readers understand the relationship with a “retarded child” not as a heart-wringing tragedy but as a valuable and enjoyable human relationship.

Although in both theory and practice American society has moved beyond earlier versions of the social contract tradition, by insisting on human dignity as a central social value, it is far from having shaken off a dark implication inherent in the very idea of a social bargain for mutual advantage, namely that those who remain dependent are not full participants.14 “A more capacious and supple sense of what it is to be human”15 is crucial if we are to think more clearly about problems of justice. One reason for optimism, as Bérubé says, is that we know that human beings are able to imagine and to communicate what they imagine even to someone who did not have that image before. If we were able to form the grim picture of the “mongoloid idiot,” a generic being living out its hopeless future in an institution, it ought to be possible to learn to put in its place the image of Jamie, a particular child.

  1. 4

    John Locke, Second Treatise on Government, Chapter Eight.

  2. 5

    David Gauthier, Morals by Agreement (Clarendon Press/Oxford University Press, 1986), p. 18, speaking of all “persons who decrease [the] average” level of well-being in a society.

  3. 6

    John Rawls, Political Liberalism (Columbia University Press, expanded paper edition 1996), p. 183 and elsewhere. Rawls’s moral version of the contract doctrine is obviously very different from Gauthier’s Hobbesian view, but in this respect there is a limited similarity.

  4. 7

    Thus, for example, Rawls refuses to grant that we have any duties of justice to animals, on the grounds that they are not capable of reciprocity (A Theory of Justice, Harvard University Press, 1971, pp. 17, 504-505); they are owed “compassion and humanity,” but “they are outside the scope of the theory of justice, and it does not seem possible to extend the contract doctrine so as to include them in a natural way” (A Theory of Justice, p. 512). His account of reciprocity seems very narrow, given the capacities of Jamie, Sesha, and Arthur for many types of interaction.

  5. 8

    Presumably, though Rawls leaves all such matters abstract, constitutional guarantees of race and sex equality would be central examples of such structures.

  6. 9

    Amartya Sen, “Equality of What?” in his Choice, Welfare, and Measurement (MITPress, 1982), pp. 353-372. Kittay refers with sympathy to Sen’s views.

  7. 10

    The idea of a mutually advantageous bargain also prevents the contracting parties from thinking about how they will support the needs of citizens who do not have the powers that they have. The premise that people are thinking of their own advantage is deeply built into the structure of the entire process of judgment in theories of social contract.

  8. 11

    Mitchell Levitz and Jason Kingsley, Count Us In: Growing Up with Down Syndrome (Harcourt Brace, 1994).

  9. 12

    Another issue on which both books take nuanced positions is the issue of aborting fetuses known to have grave mental disabilities. Neither author would stigmatize parents who choose such a course; both are concerned primarily that parents not be coerced into such choices by lack of social support for the children they would otherwise bear.

  10. 13

    As of 1986, 43 percent of working women in Sweden were employed part-time, and women took fifty-two days of leave for every day taken by a man (Joan Williams, Unbending Gender, p. 51, with references).

  11. 14

    Thus Gauthier says that while the elderly have paid for the care they receive by earlier periods of productivity, the handicapped have not (Morals by Agreement, p. 18, n. 30).

  12. 15

    This phrase is Bérubé’s, from a paper published after the book, entitled “Disability and the ‘Difference’ It Makes,” delivered at the Smithsonian National Museum’s conference “Disability and the Practice of Public History,” May 1999.

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