Citizenship and Disability

...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...

...Perhaps if plaintiffs with disabilities had won a greater number of cases over the past thirteen years, the conservative backlash against the ADA—currently confined to a few cranks complaining about handicapped parking spaces and a wheelchair ramp at a Florida nude beach—would be sufficiently strong as to spark a movement to repeal the law altogether...

...And yet the IDEA did not wish that right into being overnight...

...regardless of whether they were born in twentieth-century Illinois or second-century Rome or seventh-century central Asia...

...its content is something we actually cannot know in ad vance...

...Yet at the same time, the state needs to enhance equal participation among its citizens simply in order to determine what its democratic processes will 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...

...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...

...Nor did we expect him to be so talented a mimic...

...And from this I draw two points...

...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...

...For what would it mean for Jamie to "possess" rights that no one on earth recognized...

...Disability is not the only area of social life in which the politics of recognition are inseparable from the politics of redistribution...

...That might be one way of recognizing and respecting something you might want to call our human dignity...

...Similarly, the Individuals with Disabilities Education Act of 1975 (originally the Education for All Handicapped Children Act) was not some kind of breakthrough discovery whereby children with disabilities were found to be rights-bearing citizens of the United States after all, and who knew that we'd had it all wrong for 199 years...

...First, the idea of participatory parity does double duty in Fraser's work, in the sense that it names both the state we would like to achieve and the device by which we can gauge whether we're getting there...

...The recognition of his human dignity, enshrined in those rights, was invented...

...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...

...How can we remedy this...

...So let me be especially clear on this final point...

...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...

...A fat lot of good it would do him...

...As disability activists and legal analysts quickly pointed out, this decision left these plaintiffs in the ridiculous situation of being too disabled to be hired but somehow not disabled enough to be covered by the ADA...

...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...

...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, DISSENT / Spring 2003 n 55 CITIZENSHIP AND DISABILITY or with life, liberty, and the pursuit of happiness...

...Does he wear glasses...

...That it did not is evidence that the ADA's coverage is restricted to only those whose impairments are not mitigated by corrective measures...

...In three identical 7-2 decisions, the Court found that the plaintiffs had no basis for a suit under the ADA precisely because their disabilities were easily correctable...

...He has some idiosyncrasies that do not serve him well in school or in testing situations: at one 52 n DISSENT / Spring 2003 point he memorized the numbers on the wrong side of his flash cards, the serial numbers that indicate each card's place in the deck...

...Had Congress intended to include all persons CITIZENSHIP AND DISABILITY with corrected physical limitations among those covered by the Act, it undoubtedly would have cited a much higher number of disabled persons in the findings," wrote O'Connor...

...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...

...We did not expect him to be able to do multiplication or division...

...But in another sense the promise is unspecifiable...

...And by the same token, those rights, and that recognition, can be taken away...

...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...

...Blue...

...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...

...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...

...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...

...What color is his hair...

...she asked...

...Of course, many of us would prefer to believe that our children have intrinsic human rights and human dignity no matter what...

...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...

...And what of reproductive rights...

...When I completed the book Jamie was only four, and had not yet entered the public K-12 system...

...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...

...But this is just a parent's—or a philosophical foundationalist's—wishful thinking...

...If the ADA were understood as a broad civil rights law, and if it were understood as a law that potentially pertains to the entire population of the country, then maybe disability law would be understood not as a fringe addition to civil rights law but as its very fulfillment...

...DISSENT / Spring 2003 n 57...

...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...

...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...

...This time, however, I want to press the point a bit harder...

...R R 'Guns CAN BE created, reinterpreted, extended, and revoked...

...One, he's a child...

...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...

...L L ET ME EXPLAIN...

...Over eleven years, then, we've come to expect that Jamie will defeat or exceed our expectations when we least expect him to...

...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...

...Because, as Silvers argues, "litigation under the ADA commonly turns on questions of classification rather than access," all three plaintiffs were determined to have no standing under the law...

...Rather, recognition politics have consequences for the redistribution of social goods and resources even though they cannot be reduced to their redistributive effects...

...MICHAEL BERUBE is the Paterno Family Professor in Literature at Pennsylvania State University...

...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...

...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...

...The passage of the ADA should therefore be seen as an extension of the promise of democracy, but only as a promise: any realization of the potential of the law depends on its continual reinterpretation...

...Rather, Jamie's rights were invented, and implemented slowly and with great difficulty...

...He likes to pretend that he does not know left from right, referring instead (with perverse delight) to his "left foot" and his "other foot...

...v. Kirkingburg...

...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...

...the key terms "appropriate" and "least restrictive" had to be interpreted time and again, over the course of fifteen years, before they were understood to authorize "full inclusion" of children with disabilities in "regular" classrooms...

...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...

...even though Jamie has led me to think this way, he doesn't talk the way I do...

...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...

...We've tried to make every available use of his startlingly prodigious memory, and we've learned that when he tells us that such and such bird is not a parrot but is instead a scarlet macaw, he's usually right...

...Imagine a building in which political philosophers are debating, in 56 n DISSENT / Spring 2003 the wake of the attacks of September 11, 2001, the value and the purpose of participatory parity over against forms of authoritarianism or theocracy...

...The question of whether any of them was justly denied employment was simply not addressed by the Court...

...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...

...We did not expect him to win a spelling award in second grade for maintaining an average above 90 on his spelling tests for the year...

...For a while he tried to put off unpleasant tasks by telling his teachers or therapists, "Let's do that tomorrow...

...For the IDEA does not merely guaran tee all children with disabilities a free appro priate public education in the least restrictive environment...

...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...

...Nothing about the law is set in stone...

...No," Jamie said, "just eyes...

...we did not expect him to be able to ask us "why" questions, as when he asked me why I could not leave him alone in a hotel room while I went to park the car...

...But I've since come to believe that the literalism of the decision is an indirect acknowledgment of how broad the issues at stake here really are...

...Perhaps some of our fellow citizens with developmental disabilities would not put the argument quite this way...

...One case involved twin sisters who were denied the opportunity to test as pilots for United Airlines on the grounds that their eyesight did not meet United's minimum vision requirement (uncorrected visual acuity of 20/100 or better without glasses or contacts) even though each sister had 20/20 vision with corrective lenses (Sutton v. United Airlines, Inc...

...other matters central to citizenship, such as immigration, reproductive rights, and criminal justice, are every bit as complex...

...another involved a driver/mechanic with high blood pressure (Murphy v. United Parcel Service...

...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...

...we did not ex CITIZENSHIP AND DISABILITY pect him to open books and ask us to read and tell all the things...

...Could anything make this clearer than the politics of disability...

...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...

...he can imitate both of us, just as he can imitate break dancers and gymnasts and snakes and lemurs...

...This is why the promise of disability rights is unspecifiable...

...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...

...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...

...Nonetheless, our society's representations of disability are intricately tied to, and sometimes the very basis for, our public policies for "administering" disability...

...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...

...The only philosophical "foundation" underlying the IDEA and its various realizations is our own collective political will, a will that is tested and tested again every time the Act comes up for reauthorization...

...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...

...For the meaning of the word, just as Wittgenstein wanted us to believe (in order that we might be undeceived about how our words work), lies in its use in the language...

...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...

...But then again, perhaps if the law were read more broadly, more Americans would re 54 n DISSENT / Spring 2003 alize their potential stake in it...

...As Jamie reminds me daily, both CITIZENSHIP AND DISABILITY 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...

...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...

...irrespective of any form of human social organization...

...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...

...On the contrary, the point is central to the practical workings of any democratic polity...

...Jamie is now in his sixth year of school, having entered kindergarten in 1997-1998...

...HERE IS AN obvious reason why disabil ity rights are so rarely thought of in terms of civil rights: disability was not covered in the Civil Rights Act of 1964...

...the third involved a truck driver with monocular vision (20/200 in one eye) who in 1992 had received a Department of Transportation waiver of the requirement that truck drivers have distant visual acuity of 20/40 in each eye as well as distant binocular acuity of 20/40 (Albertson's, Inc...

...My wife, Janet, and I did not teach him these things, but the minute it became clear that he could do them in school, we picked up the ball and ran with it...

...In one respect, the promise of the IDEA, like the promise of the ADA, is clear: greater inclusion of people with disabilities in the so cial worlds of school and work...

...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...

...Black," Jamie replied...

...And then he wouldn't have it, and so much the worse for the human race...

...It is possible to object that O'Connor's decision was excessively literalist, and that the potential number of Americans covered by the ADA is, in any case, quite irrelevant to the question of whether a woman can fly a plane when she's got her glasses on...

...We did not expect him to be designated by his classmates in third grade as the kid with the best sense of humor...

...It is striking, nonetheless, that so few leftists have understood disability in these terms...

...One of the tasks required of democrats is precisely this: to extend the promise of democracy to previously excluded individuals and groups some of whom might have a substantially different understanding of "participatory parity" than that held by previously dominant groups and individuals...

...For in order to maintain a meaningful democracy in which all citizens participate as legal and moral equals, the state needs to judge whether its policies enhance equal participation in democratic processes...

...Nancy Fraser's account of the "politics of recognition" and the "politics of redistribution" (Adding Insult to Injury: Social Justice and the Politics of Recognition), for example, offers a theory that tries to accommodate what were the two major strands of American progressiveleft thought in the 1990s, multiculturalism and democratic socialism (in all their varieties)— or what Richard Rorty, in Achieving Our Country, termed the "cultural left" and the "reformist left," the former concerned primarily with combating social stigma and the latter concerned primarily with combating greed...

...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...

...This is not a meta-theoretical quibble...

...In 1999, for instance, the Supreme Court ruled on three lower-court cases in which people with "easily correctable" disabilities—high blood pressure, nearsightedness—were denied employment...

...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...

...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 irrespon sible...

...Indeed, in writing her opinion for the majority, Justice Sandra Day O'Connor explicitly refused to consider the wider question of "access," noting that 160 million Americans would be covered by the ADA if it were construed to include people with "easily correctible" disabilities (under a "health conditions approach"), and since Congress had cited the number 43 million in enacting the law, Congress clearly could not have intended the law to be applied more widely...

...and second, in the sense that the visual and rhetorical representations of "feebleminded" persons then set the terms for public DISSENT / Spring 2003 n 53 CITIZENSHIP AND DISABILITY policy...

...or, to put this another way, plaintiffs' "easily correctable" disabilities were not so easily correctable as to allow them access to employment...

...On the contrary, the IDEA invented a new right for children with disabilities, the right to a "free and appropriate public education in the least restrictive environment...

...Jamie has worn glasses for about five years...

...But then, Janet and I did not expect him to be able to describe his classmates at all...

...Jamie Berube currently has a right to an inclusive public education, but that right is neither intrinsic nor innate...

...j j AMIE 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...

...What color are his eyes...