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Lennard DavisCompelling reading. Charlton is a subtle thinker....he avoids painting his picture of oppression with simple, broad strokes.
— The Nation
Charlton finds an antidote for dependency and powerlessness in the resistance to disability oppression that is emerging worldwide. His interviews contain striking stories of self-reliance and empowerment evoking the new consciousness of disability rights activists. As a latecomer among the world's liberation movements, the disability rights movement will gain visibility and momentum from Charlton's elucidation of its history and its political philosophy of self-determination, which is captured in the title of his book. Nothing About Us Without Us expresses the conviction of people with disabilities that they know what is best for them. Charlton's combination of personal involvement and theoretical awareness assures greater understanding of the disability rights movement.
Nothing About Us Without Us
I first heard the expression "Nothing About Us Without Us" in South Africa in 1993. Michael Masutha and William Rowland, two leaders of Disabled People South Africa, separately invoked the slogan, which they had heard used by someone from Eastern Europe at an international disability rights conference. The slogan's power derives from its location of the source of many types of (disability) oppression and its simultaneous opposition to such oppression in the context of control and voice.
"Nothing About Us Without Us" resonates with the philosophy and history of the disability rights movement (DRM), a movement that has embarked on a belated mission parallel to other liberation movements. As Ed Roberts, one of the leading figures of the international DRM, has said, "If we have learned one thing from the civil rights movement in the U.S., it's that when others speak for you, you lose" (Driedger 1989:28). In this sense, "Our Bodies, Ourselves" and "Power to the People" can be recognized as precedents for "Nothing About Us Without Us." The DRM's demand for control is the essential theme that runs through all its work, regardless of political-economic or cultural differences. Control has universal appeal for DRM activists because the needs of people with disabilities and the potential for meeting these needs are everywhere conditioned by a dependency born of powerlessness, poverty, degradation, and institutionalization. This dependency, saturated with paternalism, begins with the onset of disability and continues until death. The condition of dependency is presently typical for hundreds of millions of people throughout the world.
Only in the past twenty-five years has this condition begun to change. Although little noticed and affecting only a small percentage of people with disabilities, this transformation is profound. For the first time in recorded human history politically active people with disabilities are beginning to proclaim that they know what is best for themselves and their community. This is a militant, revelational claim aptly capsulized in "Nothing About Us Without Us."
The Dialectics of Disability Oppression and Empowerment
Very little has been written on disability oppression and even less on the resistance to it. Furthermore, while there is a growing body of literature on disability in Europe and the United States, little information is available about disability in other parts of the world. What we know about disability—a significant part of the human condition—and hence about the human condition itself is thus fundamentally incomplete. I have undertaken such a discourse on disability. It is part descriptive, part conversational, part theoretical, and wholly argumentative. My thesis synthesizes theories and opinions about oppression and exploitation, power and ideology, resistance and empowerment. In the end, this book is as much a polemic, filtered by many voices and personal experiences, as anything else.
Chapters 2 through 6 explore the outrageous conditions in which hundreds of millions of people with disabilities live the world over—a reality that, unfortunately, cannot be contested. Beginning with chapter 7 I describe how some people with disabilities have organized to resist these conditions. Some might think any attempt to establish a comprehensive theory of disability oppression is preposterous, given the thousands of cultures and the political-economic disparities across the globe. These differences present many problems, but they are not, I believe, irreconcilable. One of the most important findings from interviews with more than fifty disability rights activists in ten countries is the similarity of lived disability experiences across cultures and political-economic zones. It is also clear that in the most disparate places the disability rights movement approaches and resists the particularities of the disability experience in very similar ways. Within this resistance lies the potential, however speculative and problematic, for the elimination of (disability) oppression. Simply put, this book is about the dialectics of the disability experience: oppression and its opposites, resistance and empowerment.
My mission is threefold. First, I wish to familiarize readers with an epistemological break with previous thinking about disability—a break that has affected millions of people with and without disabilities and that will even more widely influence people in the decades to come. Second, I intend to suggest ways of thinking about relationships and conditions of oppression and resistance that have rarely been applied to disability. In doing so, I attempt to answer, among other questions, why so many people acquiesce to oppression and why some people not only individually resist these conditions but also actively organize to change them. Third, I want to provide a political, economic, and cultural context to better understand and support an emerging international disability rights consciousness and movement. The point is not that every person with a disability experiences the same kind of oppression and identically resists it but rather that people with disabilities are oppressed and resist this oppression individually and collectively in ways that are generalizable.
My motivation is simple. I have seen and felt how people with disabilities are treated. In the most obvious and the subtlest ways, these conditions cry out for attention and are, in themselves, a fundamental critique of the existing world order. This book is not a plea for pity. We have had enough of that. It is also not an expression of hope for a helping hand. Hope is useful only when it is not illusory, and help is useful only when it leads to empowerment. Nothing About Us Without Us both advocates an epistemological break with old thinking about disability and demands an end to the cycles of dependency into which hundreds of millions of people with disabilities are forced.
Methodology and Other Considerations
This book is founded principally on the everyday life of people with disabilities. It derives first and foremost from my own particular experiences as a person with a disability and as an activist in the disability rights movement in the United States. Second, it comes out of others' experiences described in conversations, discussions, and interviews or excerpted from the existing literature. The "evidence" that follows is on one level self-reflection. We might call this method of observation "human sensuous practice" or "lessons from life." I would argue that these experiences so closely coincide that they can be synthesized into a general, albeit partial, description of everyday life for people with disabilities.
Most of these lessons from life come from the Third World. To consider disability oppression as a generalized phenomenon, attention must be directed to those parts of the world where 80 percent of all people (with disabilities) live. To do this, I have used the analysis and personal stories of disability rights activists from these regions, along with those of activists and political theorists from other parts of the world. The political-economic and sociocultural dimensions of disability oppression, as well as peoples' resistance and organization, are framed by these narratives.
Concerns and Limitations
It should be emphasized from the outset that this book rests on what Eric Hobsbawm called "curiously uneven foundations" in the preface to his book The Age of Extremes. Although I believe the everyday lives of people with different disabilities in different cultures have many common qualities and characteristics, I also know there are serious limitations my general exposition has to acknowledge. Many important geopolitical and cultural areas of the world are not covered in this study, among them, most prominently, northern Asia (Japan, Korea, the People's Republic of China [PRC]) and the Middle East. My understanding of Europe, especially eastern and southern Europe, is also limited. Some aspects of Chinese culture are picked up in interviews with the Chinese DRM leaders in Hong Kong (and in secondary sources), but the reach of the PRC's political, economic, and social influences is not shown. Cultures of the Middle East are not accounted for, although Moslem views and attitudes toward disability are partially covered in examining Indonesia and consulting secondary sources. I cannot say if Indonesian practices resemble those of the Arab Middle East.
In addition, many types of disabilities are not sufficiently represented. The absence of people with mental and cognitive disabilities is especially notable because these disabilities combine to make up the largest disability "category." Although I have incorporated some material from U.S. sources, it is sketchy. Still, I received almost universal confirmation from disability rights activists that people with mental illness are the most discriminated against and the most isolated in their respective countries. This is a significant finding.
Also meriting fuller representation are people who are deaf. Their isolation, especially in the Third World, parallels that of individuals with mental disabilities. The scarcity of sign language interpreters exacerbates this condition and also compounds the difficulty of identifying and interviewing even those who are politically active.
Finally, I have set the topic of AIDS aside to narrow the scope of this project. To be sure, in many countries and regions—indeed throughout Africa, Brazil, and possibly Thailand as well—one can reasonably argue that AIDS is the most important disability issue. There is no doubt that the ideological and social experiences of people with AIDS closely parallel those of people with other disabilities, especially disabilities closely linked with "illness"— cancer, mental illness, diabetes, and so on. Susan Sontag's two brilliant expositions on the "feelings" embodied in and the imagery associated with various disabilities, Illness as Metaphor and AIDS and Its Metaphors, are applicable. General economic and specific sociocultural similarities do, however, unify the experience of disability. We realize this almost intuitively. Besides the ubiquitous conditions of poverty and degradation that surround it, we know that when a person becomes disabled, she or he immediately becomes "less"—what Wilhelm Reich refers to as "bio-energetic shrinking." This is the phenomenon Sontag explores in Illness as Metaphor and is the thought most associated with disability per se. A person goes to a physician to get a routine physical exam. After the procedure, the physician, noticeably different in demeanor, announces that the "patient" has cancer. The person immediately feels sick (sometimes referred to as a sinking feeling) and shrinks. They become less, although there is nothing different from moments before, when the person felt healthy and full. The psychosocial manifestation of this phenomenon unifies all disabilities, from cancer and AIDS to spinal cord injury and amputation to deafness and blindness.
Terminology, Definitions, and Statistics
Now we come to questions of terminology and definition. The first term requiring definition is "disability." For my purposes, disability is based on social and functional criteria. This means, first, that disability is not a medical category but a social one. Disability is socially constructed. For example, if a particular culture treats a person as having a disability, the person has one. Second, the category "disability" includes people with socially defined functional limitations. For instance, deaf people are considered disabled although many deaf individuals insist they do not have a disability. People do not get to choose whether they have disabilities. Most political activists would define disability as a condition imposed on individuals by society. This definition is mirrored in the Americans with Disabilities Act of 1990: "The term 'disability' means with respect to an individual (a) a physical or mental impairment that substantially limits one or more of the major life activities of such individual; (b) a record of such an impairment; (c) being regarded as having such an impairment."
Estimates of the numbers of disabled persons based on this definition (broadly considered) have been available for twenty years and have not changed much. Writing in Rehabilitation International in 1981, John H. Noble, Jr., stated, "In 1975 people throughout the world suffering [sic] all types and degrees of disability numbered an estimated 490 million (12.3 percent of the world population); by the year 2000, their number will reach an estimated 846 million (13 percent). Whereas in 1975 more than three-quarters of this population lived in developing countries, by the year 2000 more than four-fifths of all disabled people will live in these countries." Ten years later, the U.S. General Accounting Office quoted the United Nations as estimating that 80 percent of the world's 500 million persons with disabilities live in the "developing countries" (the UN's term). In the 1995 UNESCO report, "Overcoming Obstacles to the Integration of Disabled People," England's Disability Awareness in Action breaks this number out further: 300 million people with disabilities live in Asia (70 million children); 50 million in Africa; and 34 million in Latin America.
The second term needing clarification is "oppression." Oppression occurs when individuals are systematically subjected to political, economic, cultural, or social degradation because they belong to a social group. Oppression of people results from structures of domination and subordination and, correspondingly, ideologies of superiority and inferiority. In Justice and the Politics of Difference, Iris Young presents five "faces" of oppression: exploitation, oppression that takes place in the process of labor; marginalization, the inability or unwillingness of the economic system to incorporate a group of people in its political, economic, and cultural life; powerlessness, a group's lack of power or authority; cultural imperialism, the demeaning of a group by the dominant culture's values; and violence, random or organized attacks on a group (1990:48–65). These categories, if interpreted correctly, are helpful in defining oppression.
Most important, oppression, like all social processes, must be understood as experienced in and conditioned by real life. Political, economic, and cultural contexts determine the similarities and differences in the experience of people with disabilities.
Two other terms that require definition or at least an explanation are "underdeveloped countries" and "Third World." These terms are intertwined, and many people do not much like them. Analogous terms or phrases include "transitional societies," "developing countries," "undeveloped countries," "the periphery," and "newly industrialized countries." All of these mean different things to different people. I prefer "underdeveloped" because it implies the process colonies went through as colonizers expropriated and exploited the cheap labor and resources available there. These countries and regions were underdeveloped. In my use, "underdevelopment" denotes the expropriation and despoliation of huge chunks of what has come to be known as the Third World. Some prefer the term "maldevelopment." Both locate the root causes of the political-economic circumstances of these regions in colonialism and imperialism without casting aspersions on the region's people, although both recognize the collusion of indigenous elites. This is my intent as well. Many prefer to use the term "developing countries." The problem, of course, is that most, if not all, are not developing. They are, and have long been, stagnating in crisis. It is important to remember that "underdevelopment" is a political-economic condition and does not imply anything about history and culture. Economically poor countries have exceptionally rich cultures and histories.
And finally, I use the terms "Third World" and "periphery" to position Latin America, Africa, and Asia and parts of the Middle East in relation to the first (the United States) and second worlds (Japan and Europe) in the context of political economy. In the past, some people divided the first and second worlds between the capitalist and socialist worlds, but that division is now unnecessary. Significant political-economic divisions do, however, separate the United States from the rest of the world because of its military superiority. Some people have suggested the term "Fourth World" for those nations whose national economies generate less than $1,000 per capita. This is splitting hairs. All nations of the Third World are poor whether they are at the low or high end of the economic range (most often cited as $200 to $4,000 per capita). I use the terms "Third World" and "periphery" interchangeably because both imply an economic center and an economic periphery.
Excerpted from Nothing About Us Without Us by James I. Charlton. Copyright © 1998 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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|1||Nothing About Us Without Us||3|
|2||The Dimensions of Disability Oppression: An Overview||21|
|3||Political Economy and the World System||37|
|4||Culture(s) and Belief Systems||51|
|5||Consciousness and Alienation||69|
|6||Observations on Everyday Life||83|
|7||Empowered Consciousness and the Philosophy of Empowerment||115|
|8||The Organization of Empowerment||130|
|9||The Dialectics of Oppression and Empowerment||153|