Disabled Lives: Who Cares?

1.

Sesha, daughter of the philosopher Eva Kittay and her husband Jeffrey, is a young woman in her early thirties. Attractive and affectionate, she loves music and pretty clothes, and responds with joy to the affection and admiration of others. Sesha sways to music and hugs her parents. But she will never walk, talk, or read. Because of congenital cerebral palsy and severe mental retardation, she will always be profoundly dependent on others. She needs to be washed, fed, dressed, wheeled out into Central Park. Beyond such minimal custodial care, if she is to flourish in her own way she needs companionship and love, a visible response to the capacities for affection and delight that are her strongest ways of connecting with others. Her parents, busy professionals, both care for Sesha for long hours themselves and pay a full-time caregiver. Still other helpers are needed on the many occasions when Sesha is ill or has seizures, and cannot help by telling where she hurts. In Love’s Labor Kittay argues that Sesha’s need for care suggests both major criticisms of our dominant theories of social justice and major changes that should be made in our political arrangements.

My nephew Arthur is a big, good-looking ten-year-old. He loves machines of all sorts, and by now he has impressive knowledge of their workings. I could talk with Arthur all day about the theory of relativity, if I understood it as well as he does. On the phone with Arthur, it’s always “Hi Aunt Martha,” and then he goes right into the latest mechanical or scientific issue that fascinates him. But until recently Arthur has been unable to learn in a classroom with other children, and he cannot be left alone for a minute when he and his mother are out shopping. He has few social skills and he seems unable to learn them. Affectionate at home, he becomes terrified if a stranger touches him. Unusually large for his age, he is also very clumsy, unable to play games at which most younger children are adept. He also has distracting bodily tics and makes weird noises.

Arthur has both Asperger’s Syndrome, a type of autism, and Tourette’s Syndrome. His parents have full-time jobs, and they cannot afford much help. Fortunately his mother’s job as a church organist allows her to practice at home, and church people don’t mind if she brings Arthur to work. More important still, the state in which they live has agreed, after a struggle, to pay for Arthur’s education at a private school equipped to handle his combination of gifts and disabilities. None of us knows whether Arthur will ever be able to live on his own.

Jamie Bérubé loves B.B. King, Bob Marley, and the Beatles. He can imitate a waiter bringing all his favorite foods, and he has a sly sense of verbal humor. Born with Down Syndrome, Jamie has been cared for, since his birth, by a wide range of doctors and therapists, not to mention the non-stop care of his parents, the literary critics Michael Bérubé and Janet Lyon. In the early days of his life, Jamie had to be fed through a tube inserted into his nose, and have his oxygen levels monitored by a blood gas machine. At the time his father describes him in Life As We Know It—using a detailed life story as the basis for a political argument on behalf of the rights of the mentally disabled—Jamie is three. A speech therapist works to develop the muscles of his tongue; another teaches him American Sign Language. A massage therapist elongates the shortened muscles of his neck so that his head can sit straighter. Movement therapists work on the low muscle tone that is the main obstacle to both movement and speech in Down children. Equally important, a good local preschool in Urbana, Illinois, includes him in a regular classroom, stimulating his curiosity and giving him precious confidence in relationships with other children, who react well to his sweet personality. Above all, his brother, parents, and friends make a world in which he is not seen as “a child with Down Syndrome,” far less as “a mongoloid idiot.” He is Jamie, a particular child. Jamie will probably be able to live on his own to some extent, and to hold a job. But his parents know that he will, more than most other children, need them all his life.

Extreme dependency comes in many forms. And it is not only the wide range of children and adults with disabilities who need extensive and even hourly care from others. The mental, physical, and social disabilities that I have just described all have rough parallels in the conditions of the elderly, who are generally even more difficult to care for than disabled children and young adults—more angry, defensive, and embittered, less physically pleasant to be with. Washing the body of a child with Down Syndrome seems vastly easier to contemplate than washing the incapacitated and incontinent body of a parent who hates being in such a condition, especially when both the washer and the washed remember the parent’s prime. So the way we think about the needs of children and adults with disabilities is not a special department of life, easily cordoned off from the “average case.” It also has implications for the way we think about our parents as they age—and about the needs we ourselves are likely to have if we live long enough.¹ As the life span increases, the relative independence many of us enjoy looks more and more like a temporary condition, a phase of life that we move into gradually, and which we all too quickly begin to leave. Even in our prime, many of us encounter shorter or longer periods of extreme dependency on others—after surgery or a severe injury, or during a period of depression or acute mental stress.

Who does all the work that extreme dependency requires? In most cases, as Eva Kittay and Joan Williams, a law professor and author of Unbending Gender, emphasize, this work is done by women.² Ordinary child care is still disproportionately done by women, since women are far more likely than men to accept part-time work and the career detours it requires. Fathers who agree to help care for a child who will soon go off to school, moreover, are much less likely to shoulder the taxing long-term burden of care for an extremely disabled child or parent. In the United States, furthermore, most women who do such work cannot count on much by way of support from an extended family or community network.

Much of the work of caring for a dependent is unpaid; nor is it recognized by the market as work. And yet it has a large effect on the rest of such a worker’s life. My sister could not hold any job that did not allow her long hours at home. That the Bérubés and Kittays both share their child-care responsibilities more equally than most other ambitious professionals is made possible only by their flexible schedule of university teaching and writing. They also can afford a lot of help—most of it, as Kittay notes with unease, from women who are themselves, even though paid, neither paid very highly nor as generally respected by society as they should be for performing a vital social service.

Three urgent problems of social justice emerge in the books by Kittay, Bérubé, and Williams. First, there is the issue of the fair treatment of mentally and physically disabled people who need a lot of care throughout their lives. In another era, Sesha and Jamie probably would have died in infancy; if they had lived they would have been put in institutions and given minimal custodial care, never getting a chance to develop their capacities for love, joy, and in Jamie’s case substantial cognitive achievement and, probably, active citizenship. Ten years ago, before Asperger’s Syndrome was recognized as a disease, Arthur would have been treated as a smart kid whose parents had messed him up emotionally. He would probably have been put into an institution, with no opportunity to learn, and they would have lived with crushing guilt.

Second, there is the related, but distinct, issue of providing adequate care for people who at times function relatively independently during phases of their lives in which they are profoundly dependent. The elderly always received some care, especially if they had children; but until recently they did not get, and many still do not get, the sort of care that shows respect for their dignity and encourages continued activity of body, mind, and heart. Providing such care looks like one of the things a just society would do.

A just society, we might think, would also look at the other side of the problem, the burdens on people who provide care for dependents. These people need many things: recognition that what they are doing is work; assistance, both human and financial; a chance at a rewarding career for themselves and at participation in social and political life. At one time, as Joan Williams shows, it used to be assumed that all this work would be done by women, who were not full citizens anyway and did not need to work outside the home. Women weren’t asked whether they would do this work: it was just theirs to do.

We now think of women as equal citizens who are entitled to pursue the full range of occupations. We also generally think that they are entitled to a real choice about whether they will assume the burden of caring for a disabled elderly parent. Nor would most people say, if asked, that the accident of giving birth to a severely handicapped child should blight the prospects, for the parents or one parent, of living a productive personal and social life. But the realities of life in a society that still assumes that this work will be done for free, “out of love,” still put enormous burdens on women across the entire economic spectrum, diminishing their productivity and their contribution to civic and political life.

2.

What have theories of justice said about these problems? As Kittay insists, virtually nothing. Nor, she argues, can the omission be easily corrected, for it is built into the structure of our own strongest theories. Kittay believes that these theories have done real harm, shaping our practical political ideas through their subtle effect on the ways we speak and think. (For example, she plausibly suggests that attacks on providing welfare for non-working mothers are influenced by images of the citizen as an independent worker that come to us from centuries of social-contract thinking.) Thus she holds that more perceptive philosophical theorizing is important to addressing these issues in practical political life. Even if not immediately, theoretical conceptions shape public arguments, giving people the concepts they use and shaping the alternatives they consider. Her point has force: without explicit feminist arguments about rape and sexual harassment, for example, prejudiced conceptions of sexuality would very likely have continued to suffuse our political culture.³ Persuasive theories are only one part of good political action, but they are a part.

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.