Disability Studies Quarterly Winter/Spring 2007, Volume 27, No.1-2 <www.dsq-sds.org> Copyright 2007 by the Society for Disability Studies

The right to have rights, according to Hannah Arendt's valuable formulation, bases human rights on the right to belong to a political community in which individuals are judged by their actions and opinions.i Only this species of political belonging guarantees the recognition of individuals as members of humanity, with the consequence that the deprivation of human rights is manifested above all as the deprivation of the status of being human. Arendt first becomes aware of the need to have a right to have rights in her study of the dark implications of totalitarianism. The rise of totalitarian regimes in the first half of the twentieth century, she argues, made visible the "constitutional inability" of European nation-states to guarantee human rights, revealing the general weakening of the nation-state in the world order (Arendt, 1976, p. 269). Totalitarian governments found it useful to impose their values on neighboring states: for example, when Nazi Germany denationalized its victims, singling them out as pariahs, they were received as pariahs everywhere because their human rights had ceased to exist in the absence of state guarantee. Once driven from their homes, the victims of totalitarian regimes found it impossible to find new ones. The only practical substitute for their lost homeland became the internment camp. Totalitarianism reveals a crisis in human rights caused by "a new global political situation" (Arendt, 1976, p. 297), Arendt explains, but the solution to this crisis is not obvious:

This new situation, in which "humanity" had in effect assumed the role formerly ascribed to nature or history, would mean in this context that the right to have rights, or the right of every individual to belong to humanity, should be guaranteed by humanity itself. It is by no means certain whether this is possible (Arendt, 1976, p. 298).

According to Seyla Benhabib, Arendt's hesitation about whether it is possible for humanity to guarantee human rights has two sources. Benhabib suggests first of all that Arendt is insufficiently aware of the effects of globalization: transnational migration and the emergence of multicultural states make it difficult to base human rights on state-guaranteed citizenship. Arendt apparently doubts universal human rights and clings to citizenship rights because she does not understand that globalization has made state-guaranteed citizenship obsolete. Second, Benhabib ascribes Arendt's hesitation about universal human rights to a "certain melancholia." Notice that Benhabib does not define this melancholia as a psychological condition; rather, she calls it "an attitude of philosophical reflection and meditation about the fragility of human bonds and institutions, a new sense for the catastrophes and calamities of history, an appreciation for the profound contingency of those human institutions and practices which make freedom possible" (Benhabib, 2000, p. 14).

The emphasis in Arendtian melancholia on the frailty of human bonds and institutions mirrors the theoretical perspective on human fragility associated with disability as a critical concept, but Benhabib does not make disability a part of human rights discourse. While recognizing the fragility of human bonds and practices in the global political context, she insists on incorporating citizenship claims into a universal human rights discourse in which one's human status establishes one as a rights-bearing person. Benhabib sets as her goal the possibility of a transnational political membership in which humanitarian interventions by NATO and the international human rights regime will enforce human rights. Nevertheless, Benhabib admits a moment of hesitation where the presence of disability does pose an obstacle to the system of universal rights based on human status. She notices that the institution of civil society in the European context defines citizenship not by a hierarchical decision from above but by whether "individuals show themselves to be worthy of membership in civil society through the exercise of certain abilities" (Benhabib, 2000, p. 60; my emphasis). These "abilities" include, among others, minimal knowledge of the language of the host country, civil knowledge of laws and governmental forms, and economic sustainability through either independent wealth or employable talents and skills (Benhabib, 2000, p. 60). Benhabib is careful on a number of occasions to explain that people without these abilities should not be excluded from political membership, but she offers no specific arguments for their inclusion, and the difficult question remains how disabled people might fit into a model of citizenship or human rights based on the ideology of ability.ii In fact, closer attention to the philosophical melancholia of Arendt suggests that her hesitation about human rights derives from this same difficult question. Once freed from international law and based solely on the idea of humanity, human rights become vulnerable, Arendt complains, to arbitrary conclusions about what is best for humanity and who the best kinds of human beings are. "For it is quite conceivable," she writes, "that one fine day a highly organized and mechanized humanity will conclude quite democratically . . . that for humanity as a whole it would be better to liquidate certain parts thereof" (Arendt, 1976, p. 299). Arendt's melancholia has its source in the worry that human status will be summoned in the future as a principle of exclusion rather than inclusion.

My goal here is to revisit Arendt's melancholia as a positive foundation for the right to have rights—a goal that requires disability to play a universal role as the guarantor of human rights. To acknowledge melancholia as a philosophical intuition about the fragility of human bonds and institutions is equally to acknowledge the fragility of human beings—a fragility long recognized by disability studies scholars—since the vulnerability of human bodies and minds underlies as a first cause that of human institutions. The catastrophes and calamities of history do not destroy human institutions without first striking down human beings. It is the person who is truly fragile: bereft of the sheltering embrace of political community, human beings are reduced to "mere existence," Arendt contends, "all that which is mysteriously given us by birth and which includes the shape of our bodies and the talents of our minds" (Arendt, 1976, p. 301). Moreover, human identity is, as Alasdair MacIntyre explains, primarily "bodily identity," and it is by reference to this identity that "the continuities of our relationships to others" are mostly defined: "Among the various ills that affect us are those that disturb those continuities—loss of or damage to memory, for example, or disfigurement that prevents others from recognizing us—as well as those that disable us in other ways" (MacIntyre, 1999, p. 8). The fragilities of body and mind define us as human beings, determining the longevity of our institutions, enhancing the quality of our associations, and establishing our place in and responsibilities for the natural environment.

The problem today with using humanity as the basis for human rights is that it drags behind it outdated notions that define the human according to eighteenth-century ideals of rational cognition, physical health, and technological ability. When political membership relies on the ideology of ability, people with physical talents, the famous, and those considered geniuses have little difficulty maintaining and adjusting their citizenship status, even during times of great crisis.iii But if a person does not display rational thinking, healthiness, or technical skills, he or she risks to be seen as less than human and to lose the rights bestowed by membership in the human community. In the United States at this moment, disabled people are subject to forced confinement, deprived of the right to sue or to be sued in court, denied money damages against employment discrimination for state jobs, blocked from polling places by inaccessible architecture and obsolete voting rules, and severely limited in their ability to travel from place to place.iv Moreover, Douglas Baynton demonstrates that one of the greatest obstacles in the modern era to the civil-rights agenda of women, people of color, and immigrants has been the stigma of disability. The right to vote was withheld from women because of their supposed lack of higher reasoning. People of color had no chance to acquire civil rights as long as they were considered feeble-minded or diseased. The criminalization of refugees, asylum-seekers, and immigrants continues today to rely on representing them as less than human, imagining them as diseased, disabled, or dishonest but primarily as the first two. The presence of disability further feminizes the female other, further racializes the racial other, and further alienates the alien other. In each case, the association of disability with a particular group justifies exclusion from the community of rights-bearing people. Disability, then, is a significant factor in the imagination of the right to have rights, but it serves usually as a negative operator. What difference to human rights would it make if we were to treat fragility, vulnerability, and disability as central to the human condition, if we were to see disability as a positive, critical concept useful to define the shared need among all people for the protection of human rights?

It has often been objected that "human" is not a category that applies across cultures because the distinction between human and nonhuman is historically and culturally variable. This objection must be answered if human rights are to be guaranteed globally on the basis of human status. Moreover, the practice of granting rights to only those people capable of demonstrating a prescribed level of physical and mental ability must be swept away if being human is to serve as a universal standard for political membership. Basing human rights on disability, however, presents a more minimum standard for universality. Bryan Turner has outlined a "minimal, thin theory of human rights" that uses a "minimum criterion" of commonality based on human frailty, seeking to avoid "rich theories of human culture, symbolic communication or reason" (Turner, 1993, p. 505). He argues that human beings are frail because their "lives are finite," because they "typically exist under conditions of scarcity, disease and danger," and because they are "constrained by physical processes of ageing and decay" (Turner, 1993, p. 501). Turner understands that some human rights thinkers may protest that the condition of frailty is also historically and culturally variable and that it cannot substitute for human status in the securing of rights. He nevertheless maintains that human life is "finite" and that the majority of the world's population lives under circumstances of scarcity—and despite the existence of institutions and technologies designed to reduce these circumstances, institutions and technologies that now appear as part of the problem, not the solution (Turner, 1993, p. 501). World events appear to confirm his argument. The danger of an avian flu pandemic exposes the smallness of our planet as well as the fragility of global civil society. Hurricane Katrina has demonstrated the threat of internal statelessness to nations where there is no political will to care for those who have neither the economic nor physical ability to avoid catastrophe. Meanwhile, the emergence of technologies supposedly designed to improve human existence, such as industrial farming, mass manufactured housing, and oil refinement, have produced disabling conditions such as pollution and personal injury even as they seek to provide food and shelter for large numbers of people.v Nothing reveals the circuit of global flow and responsibility among nations with greater urgency and clarity than populations displaced and put at risk by natural disasters, famine, industrial pollution, and the spread of disease. Turner insists that rights as a system of mutual protection gain their emotive force from the collective recognition of human frailty, offering a crucial adjustment to the call for a universal rights discourse based on human status (Turner, 1993, p. 507).

The liberal tradition represents citizens as autonomous, rational beings who enter freely into social contracts by which they agree to be bound in return for rights and protections (Carey 2003). The assumption remains, however, that these contracts are not necessary to human existence. Defined by an essential freedom and independence of existence, citizens are construed as autonomous beings who are fit to walk the earth in solitude if they so desire. A focus on disability provides another perspective by representing human society as a community of dependent frail bodies that rely on others for survival. Notice that dependence does not figure here as an individual character trait but as a structural component of human society. In other words, my point is not that disabled persons are dependent because of their individual properties or traits. It is not a matter of understanding disability as weakness but of construing disability as a critical concept that reveals the structure of dependence inherent to all human societies. As finite beings who live under conditions of scarcity, we depend on other human beings not only at those times when our capacities are diminished but each and everyday, and even at those moments when we may be at the height of our physical and mental powers. The human life cycle, even though it may differ from culture to culture due to economic resources, represents a universal experience familiar to all members of the human race and with which they may reach toward common political society. Disability and dependence on others, as MacIntyre succinctly describes them, "are something that all of us experience at certain times in our lives and this to unpredictable degrees"; "consequently our interest in how the needs of the disabled are adequately voiced and met is not a special interest, the interest of one particular group rather than of others, but rather the interest of the whole political society" (MacIntyre, 1999, p.130).

Establishing the fragility of the mind and body as the foundation of a universal human rights has significant advantages. Of first importance, the principle previously used to exclude people from human status would become the principle used to include them. Accepting human fragility, vulnerability, and disability as the standard of inclusion for rights-bearing status generates a minimum, thin standard as the common denominator for humanity, one that would be difficult to use for exclusionary purposes. Second, a standard based on vulnerability is more adaptable, permitting a continuum of experience elastic enough to include people with physical and mental disabilities, the poor, refugees, children, the elderly, and persecuted ethnicities. Third, by emphasizing embodied frailty, human rights discourse moves away from more abstract determinations of rights based on membership in a nation-state or on the philosophies of various institutions such as NATO, the United Nations, or the International Red Cross. Fourth, it exposes the widespread dependence of people and nations on one another, dispelling the dangerous myth that individuals or nations exist naturally in a state of autonomy and that those individuals or nations that fall into dependence are somehow inferior to others. Finally and most crucial, it locates the activation of human rights at the point of greatest need, requiring the recognition of humanity in those people at the greatest risk of losing their place in the world. Altruistic gestures on the international scene toward people in danger, such as Mexico's offer to receive homeless victims of Hurricane Katrina, would be the rule and not the exception. The HIV/AIDS epidemic would be a human rights problem for the world, not merely a dilemma for South Africa and other affected nations to solve. Communities victimized by racial or ethnic hatred would attract international attention and support. Populations displaced by natural disasters, violence, and disease and those seeking relief from poverty would have the right to immigrate to more secure locations and to be integrated into new communities. It would no longer make sense to maintain pockets of economically deprived populations in order to make use of cheap labor for economic gain in the world market. The exploitive circuit between cheap labor and robust consumerism would be broken—replaced by a flow of immigration based on greater economic opportunities and more secure and safer living conditions.

The major question is why should we help them, why should we include the fragile, vulnerable, and disabled in our communities—that is, aside from the not negligible consideration that we are they? The standard of reciprocity, of course, has stood at the origin of human rights discourse since it was invented, but the value of disability is worth pursuing in itself for another reason. Ability as an ideology is about testing the potential of a person, making it known, and then granting admission or acceptance on what is known. The presence of this ideology explains why testing, whether for civic knowledge, medical health, or intelligence, is central to standards of political membership in the modern era. Starting from disability reverses the ideological expectation that human potential can be quantified for the simple reason that disability is variable and thus surprising, and surprise helps one to rethink human potential, producing an added bonus for human rights discourse. Michael Bérubé, for example, focuses on the surprising nature of disability in the story of his eleven year old son, Jamie, who has Down Syndrome. Bérubé soon discovers in the course of life with his son that Jamie routinely exceeds expectations for him, despite the research about Down Syndrome available from the medical establishment—about which Bérubé argues that the only expectation that Jamie meets is that he will surprise the people around him and from which an important inference must be drawn about human dignity:

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 (Bérubé, 2003, p. 53).

Bérubé concludes that the rights of disabled people should not be understood as a "fringe addition to civil rights law but as its very fulfillment" (Bérubé, 2003, p. 55). We must enlarge this claim, I believe, to understand disability rights as the fulfillment of human rights. My twofold conclusion is, first, that we can have no idea of human rights worth serious consideration in the absence of a theoretical and practical account of disability; and, second, that disability rights hold the key to universal human rights.

As a coda to my call for a new human rights discourse open to fragility, vulnerability, and disability, I offer the example of the city of Geel in Belgium, a society that provides if not a legal blueprint then a hopeful vision welcoming to citizens with disabilities (Airing, 1975; Goldstein and Godemont, 2003). Possibly since 600 AD and certainly since the thirteenth century, Geel has been a haven for people with mental disabilities. The earliest population records date from 1693. Legend has it that the King of Oriel, an island now part of the County Tyrone in Ireland, decided upon the death of his wife to wed his own daughter, Dymphna. She fled from Ireland to the present site of Geel, where her father found and killed her. The king's actions were considered insane, and because Dymphna was able to resist his advances, it was believed that she had special powers over people with mental illness, and she became their patron saint. As the legend of St. Dymphna spread far and wide, Geel became increasingly known as a center for the treatment of mental disability. Its church installed an infirmary to house arrivals in 1430, but the facilities soon proved inadequate to the influx of people seeking a new home, and the arrivals began to board with the people of the city. In this way the population of Geel became accustomed to the mentally disabled and accepted their presence as a point of pride. The church continued guardianship of the facilities until 1852 when the state took control. By 1938, when the population of boarders reached its peak, approximately 3,800 people with mental disabilities were living in the homes of the 20,000 inhabitants of the town. The presence of mentally disabled people was so common that mental impairment lost its stigma, and the people of the town embraced the boarders as citizens of Geel. The boarders came and went as they pleased. They worked in the houses or fields if they wished or did nothing if they were so inclined. If they worked, their wages were entirely their own, including if they worked for the people with whom they lived. Most surprising perhaps, the disabled people were not only Belgian; among them were found Dutch, French, English, Spanish, and Russian boarders. Others came to Geel from Chile, China, and the United States. About 45 languages or dialects were spoken by the boarders when their population was at its peak, and Geel was able to retain 80% of all persons sent there to live. Geel demonstrated no nationalistic attitudes toward boarders, requiring only that they be mentally disabled to gain entry as new citizens.

During and after World War II the population of boarders dropped by over half, and in subsequent years their numbers have continued to diminish. In 2003 there were 516 boarders living with 423 families. Researchers attribute the decrease to the growing medicalization of care for the mentally disabled and the belief that families should have formal training rather than the training of experience. Geel families shun the medical model when relating to their boarders, preferring to play the roles of supportive parent or teacher. For example, boarders were not even diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders until 2002. In the psychological literature, however, Geel has become a model for community-based mental healthcare. Though the number of boarders is now small compared to previous years, Geel continues to display practices and attitudes that make it a community ideally suited to receive fragile, vulnerable, and disabled people. Inhabitants of the city acknowledge and accept the human needs of the boarders, respond to those needs rather than acting on unfounded fears, and recognize new arrivals as members of their community. The townspeople know the boarders by name and know where they live. The entire population protects, apparently without regard for its own interests, the members of their community least likely to be accepted elsewhere.