Citizenship and Disability
In the six years since I published a book about my son Jamie, Life As We Know It, a great deal has changed in Jamie's life-starting with his realization that there is a book about him. When I completed the book Jamie was only four, and had not yet entered the public K-12 system. But I did not stop serving as Jamie's recorder and public representative when I finished that book: I still represent him all the time, to school officials, camp counselors, babysitters and friends, to academic audiences, and to Down Syndrome Associations. I take it as one of my tasks to watch for important things he's never done before, as a way of charting and understanding the irreplaceable and irreducible little person he is, especially as he gets less and less little, and more and more capable of representing himself.
Jamie is now in his sixth year of school, having entered kindergarten in 1997-1998. In the intervening years he has not continued to perform at grade level (he is repeating fourth grade, at age eleven), and he has occasionally presented his schoolmates with some eccentric behavior. On the other hand, he has learned to read, to do two- and three-digit addition and subtraction, to multiply two-digit numbers, and most recently to do division by single numbers, with and without remainders.
He is a stubborn ignatz, as people find whenever they try to get him to do something he has no interest in, or whenever his teachers or aides try to make him move from one task to another. For a while he tried to put off unpleasant tasks by telling his teachers or therapists, "Let's do that tomorrow"; before long he realized that this didn't work, and began saying instead, "We did that yesterday"-a ruse with which he has had some success.
His conversational skills are steadily improving, but unless you're talking to him about one of the movies he's seen or one of the routines he's developed at school or at home, you'll find that his sense of the world is sometimes unintelligible, sometimes merely a bit awry. He recently received an invitation to a classmate's birthday party (his third such invitation since we moved to central Pennsylvania sixteen months ago: we count and cherish each one), and Janet asked him what the birthday boy looked like: "he's a small boy," said Jamie, holding his hand around his shoulder level.
"What color is his hair?" she asked.
"Black," Jamie replied.
"What color are his eyes?"
"Does he wear glasses?" (Jamie has worn glasses for about five years.) "No," Jamie said, "just eyes."
Over eleven years, then, we've come to expect that Jamie will defeat or exceed our expectations when we least expect him to. And from this I draw two points. One, he's a child. Two, and this is a somewhat more elaborate conclusion, although it can be derived from point one: it might be a good idea for all of us to treat other humans as if we do not know their potential, as if they just might in fact surprise us, as if they might defeat or exceed our expectations. It might be a good idea for us to check the history of the past two centuries whenever we think we know what "normal" human standards of behavior and achievement might be. And it might be a very good idea for us to expand the possibilities of democracy precisely because democracy offers us unfinished and infinitely revisable forms of political organization that stand the best chance, in the long run, of responding adequately to the human rights of the unpredictable creatures we humans are. That might be one way of recognizing and respecting something you might want to call our human dignity.
Jamie is, of course, one reason why I am drawn to the question of disability rights and their relation to democracy: every morning I take him to school, I know how very fortunate he is to be living under a social dispensation that entitles him to a public education alongside his nondisabled peers.
But beyond my immediate interest in forwarding Jamie's interests, I want to argue that disability issues are-or should be-central to theories of social justice in a much broader sense. Nancy Fraser's account of the "politics of recognition" and the "politics of redistribution," for example, offers a theory that tries to accommodate what were the two major strands of American progressive-left thought in the 1990s, multiculturalism and democratic socialism (in all their varieties). Fraser has shown convincingly that the politics of recognition and redistribution offer a productive way to think about feminism: cultural politics with regard to body images or sexual harassment, for example, are not to be understood as distractions from "real" politics that address comparative worth or the minimum wage.
Rather, recognition politics have consequences for the redistribution of social goods and resources even though they cannot be reduced to their redistributive effects. And since many left intellectuals in the 1990s were all too willing to think of politics as a zero-sum game in which any attention paid to multiculturalism had to come at the expense of democratic socialism and vice versa, Fraser's work seems to offer a way for the left to champion a progressive tax code and an end to racial profiling at the same time.
It is striking, nonetheless, that so few leftists have understood disability in these terms. Disability is not the only area of social life in which the politics of recognition are inseparable from the politics of redistribution; other matters central to citizenship, such as immigration, reproductive rights, and criminal justice, are every bit as complex. Nonetheless, our society's representations of disability are intricately tied to, and sometimes the very basis for, our public policies for "administering" disability. And when we contemplate, in these terms, the history of people with cognitive and developmental disabilities, we find a history in which "representation" takes on a double valence: first, in that people who were deemed incapable of representing themselves were therefore represented by a socio-medical apparatus that defined-or, in a social-constructionist sense, created-the category of "feeblemindedness"; and second, in the sense that the visual and rhetorical representations of "feebleminded" persons then set the terms for public policy. One cannot plausibly narrate a comprehensive history of ideas and practices of national citizenship in the post-Civil War United States without examining public policy regarding disability, especially mental disability, all the more especially when mental disability was then mapped onto certain immigrant populations who scored poorly on intelligence tests and were thereby pseudo-scientifically linked to criminality. And what of reproductive rights? By 1927, the spurious but powerful linkages among disability, immigration, poverty, and criminality provided the Supreme Court with sufficient justification for declaring involuntary sterilization legal under the Constitution.
There is an obvious reason why disability rights are so rarely thought of in terms of civil rights: disability was not covered in the Civil Rights Act of 1964. And as Anita Silvers points out, over the next twenty-five years, groups covered by civil rights law sometimes saw disability rights as a dilution of civil rights, on the grounds that people with disabilities were constitutively incompetent, whereas women and minorities faced discrimination merely on the basis of social prejudice. Silvers writes, "[t]o make disability a category that activates a heightened legal shield against exclusion, it was objected, would alter the purpose of legal protection for civil rights by transforming the goal from protecting opportunity for socially exploited people to providing assistance for naturally unfit people." The passage of the Americans with Disabilities Act (ADA) in 1990 did add disability to the list of stigmatized identities covered by antidiscrimination law, but thus far the ADA has been interpreted so narrowly, and by such a business-friendly judiciary, that employers have won over 95 percent of the suits brought under the act.
Jamie Berube currently has a right to an inclusive public education, but that right is neither intrinsic nor innate. Rather, Jamie's rights were invented, and implemented slowly and with great difficulty. The recognition of his human dignity, enshrined in those rights, was invented. And by the same token, those rights, and that recognition, can be taken away. While I live, I promise myself that I will not let that happen, but I live with the knowledge that it may: to live any other way, to live as if Jamie's rights were somehow intrinsic, would be irresponsible.
Of course, many of us would prefer to believe that our children have intrinsic human rights and human dignity no matter what; irrespective of any form of human social organization; regardless of whether they were born in twentieth-century Illinois or second-century Rome or seventh-century central Asia. But this is just a parent's-or a philosophical foundationalist's-wishful thinking. For what would it mean for Jamie to "possess" rights that no one on earth recognized? A fat lot of good it would do him. My argument may sound either monstrous or all too obvious: if, in fact, no one on earth recognized Jamie's human dignity, then there would in fact be no human perspective from which he would be understood to possess "intrinsic" human dignity. And then he wouldn't have it, and so much the worse for the human race.
In one respect, the promise of the IDEA, like the promise of the ADA, is clear: greater inclusion of people with disabilities in the social worlds of school and work. But in another sense the promise is unspecifiable; its content is something we actually cannot know in advance. For the IDEA does not merely guarantee all children with disabilities a free appropriate public education in the least restrictive environment. Even more than this, it grants the right to education in order that persons with disabilities might make the greatest possible use of their other rights-the ones having to do with voting, or employment discrimination, or with life, liberty, and the pursuit of happiness.
IDEA is thus designed to enhance the capabilities of all American children with disabilities regardless of their actual abilities-and this is why it is so profound a democratic idea. Here again I'm drawing on Nancy Fraser, whose theory of democracy involves the idea of "participatory parity," and the imperative that a democratic state should actively foster the abilities of its citizens to participate in the life of the polity as equals. Fraser's work to date has not addressed disability, but as I noted above, it should be easy to see how disability is relevant to Fraser's account of the politics of recognition and the politics of redistribution. This time, however, I want to press the point a bit harder. Fraser writes as if the promise of democracy entails the promise to enhance participatory parity among citizens, which it does, and she writes as if we knew what "participatory parity" itself means, which we don't. (This is why the promise of disability rights is unspecifiable.)
Imagine a building in which political philosophers are debating, in the wake of the attacks of September 11, 2001, the value and the purpose of participatory parity over against forms of authoritarianism or theocracy. Now imagine that this building has no access ramps, no Braille or large-print publications, no American Sign Language interpreters, no elevators, no special-needs paraprofessionals, no in-class aides. Contradictory as such a state of affairs may sound, it's a reasonably accurate picture of what contemporary debate over the meaning of democracy actually looks like. How can we remedy this? Only when we have fostered equal participation in debates over the ends and means of democracy can we have a truly participatory debate over what "participatory parity" itself means. That debate will be interminable in principle, since our understandings of democracy and parity are infinitely revisable, but lest we think of deliberative democracy as a forensic society dedicated to empyreal reaches of abstraction, we should remember that debates over the meaning of participatory parity set the terms for more specific debates about the varieties of human embodiment. These include debates about prenatal screening, genetic discrimination, stem-cell research, euthanasia, and, with regard to physical access, ramps, curb cuts, kneeling buses, and buildings employing what is now known as universal design.
Leftists and liberals, particularly those associated with university humanities departments, are commonly charged with being moral relativists, unable or unwilling to say (even after September 11) why one society might be "better" than another. So let me be especially clear on this final point. I think there's a very good reason to extend the franchise, to widen the conversation, to democratize our debates, and to make disability central to our theories of egalitarian social justice. The reason is this: a capacious and supple sense of what it is to be human is better than a narrow and partial sense of what it is to be human, and the more participants we as a society can incorporate into the deliberation of what it means to be human, the greater the chances that that deliberation will in fact be transformative in such a way as to enhance our collective capacities to recognize each other as humans entitled to human dignity. As Jamie reminds me daily, both deliberately and unwittingly, most Americans had no idea what people with Down syndrome could achieve until we'd passed and implemented and interpreted and reinterpreted a law entitling them all to a free appropriate public education in the least restrictive environment. I can say all this without appealing to any innate justification for human dignity and human rights, and I can also say this: Without a sufficient theoretical and practical account of disability, we can have no account of democracy worthy of the name.
Perhaps some of our fellow citizens with developmental disabilities would not put the argument quite this way; even though Jamie has led me to think this way, he doesn't talk the way I do. But those of us who do participate in political debates, whether about school funding in a specific district or about the theory and practice of democracy at its most abstract, have the obligation to enhance the abilities of our children and our fellow citizens with disabilities to participate in the life of the United States as political and moral equals with their nondisabled peers-both for their own good, and for the good of democracy, which is to say, for the good of all of us.
Michael Berube is the Paterno Family Professor in Literature at Pennsylvania State University. This article is adapted from a talk given at the 2002 convention of the Arc of the United States (formerly the Association of Retarded Citizens of the United States).