"Deviants, Invalids, and Anthropologists*: Cross-Cultural Perspectives on Conditions of Disability in One Academic Discipline: A Review of DISABILITY AND CULTURE. Edited by BENEDICTE INGSTAD and SUSAN REYNOLDS WHYTE (Berkeley: University of California Press, 1995) [Pp. 307]
* A play on the title of Chapter One, "Deviants, Invalids, and Freedom Fighters: Historical Perceptions of People with Disabilities in the United States," in my recent manuscript, "Investigating a Culture of Disability."
This is a critical, expansive review about an important book, which may be somewhat unfair to the editors and authors. Turnabout, some say, is fair play. People with disabilities have been fair game for academics, helping professionals, politicians, and anyone else who has sought a hand in our affairs for centuries. Generalizations, ideas about what is best for us, and who knows best about us, has been essentially unquestioned for millennia. Similar attitudes prevail throughout this anthology, within the quest for answers to difficult questions, a desire to comprehend diverse cultures, and an amazing array of definitions of disability itself.
Buried on page 247 in one of the two editors many essays is the statement that recent anthropological writings stress the importance of giving an account of the researcher's background. Appropriate and fair enough. I am a historian by academic training, an activist by experience, and have recently begun to consider myself a philosopher by choice. I am a middle-class, middle-aged, white male of Jewish ancestry who has a disability. Much of my identity is entwined with my perception of myself as an individual with a disability and my self-identified life mission to promote pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.
Benedicte Ingstad, the editor referred to in the preceding paragraph is the mother of a son with a disability. She conveys this information on the same page that she stresses the importance of identifying the researcher's background. In addition to the biographical paragraph about her in the back of the book, this is the third, and final, essay in which she claims authorship. It is the next-to-last entry in the book. But it is not until this point that she shares this very important component of her background with us.
What does this have to do with the rest of the book? There are fourteen essays by twelve authors. There are apparently six male authors, one of whom is a member of an ethnic minority and has a disability, which is alluded to during the course of his essay. The remainder of the authors seem to be of European or North American origin. The editors choose to use the terms "Northern" and "Southern" to describe Western and non-Westernized cultures. Aside from the startling omission of Australia and New Zealand from Westernized status (they describe "Northern" as Europe and North America), there is a more serious question concerning the ability of the researchers to understand "Southern" cultures when only one author appears to be from such a culture himself.
This concern stems not from pre-conceived notions of any particular researcher's capabilities, but from warnings contained in the book itself. For example, from the Introduction: "But we want to be wary of a pitfall of cultural juxtaposition: our tendency to look at other cultures in terms of our own problems and thus to fail to grasp the premises upon which other people are operating" (p. 5).
A warning well-taken. Why, then, are there not more contributions from representatives of these "Southern" countries? Value-laden statements send shock waves from some of the essays. Again from the Introduction: "Although a bodily or mental deficit does indeed function as a lack for which one is entitled to receive something, the giver may also be recompensed in achieving virtue." Buried in an endnote on page 26 is the idea that someone with a disability is owed something for a condition which is unequivocally considered negative and the idea that goodness is a reward for this offering. This concise statement is a description of the charity mentality of aiding helpless cripples which people with disabilities are now rebelling against all over the world. In another essay, Ingstad states:
People with mental retardation necessarily have to be represented by their parents, or close kin..." (p. 179) This statement would be disputed by members of People First and by many community members who work with individuals with mental retardation. How much of this statement is influenced by Ingstad's role as a parent of a son with a disability (she does not state what disability) and how much by her background as a Norwegian, where family may be more important than community, unlike other parts of the world?
There are two reasons for devoting so much energy to these statements. First, the editors contribute five of the fourteen essays, slightly more than one-third and have had a hand in encouraging the development of a majority of the remainder, influencing the development and execution of this anthology more significantly than usual. Second, as these examples are intended to demonstrate, the emphasis on cross-cultural sensitivity is easier to admonish than to administer.
Facts about the books itself: The fourteen essays include an Introduction and an Epilogue. The remaining twelve contributions are divided into two sections--"Disability, Cosmology, and Personhood," and "Social Contexts of Disability." Nations included in these articles are Belgium, Botswana, Germany, Kenya, Malaysia, New Zealand, Nicaragua, Norway, Somalia, Sweden, Tanzania, Turkey, Uganda, United Kingdom, United States, and Zaire.
Both the "Introduction" and the "Epilogue" comprise interesting, stand-alone chapters which provide an appropriate beginning and a provocative conclusion. Each section is introduced with a short prologue which seems obtrusive and unnecessary. Articles contain bibliographies and endnotes. In many of the articles, the endnotes are full of minutiae, interrupting the flow of the story.
The variety of definitions about disability begins on the first page of the Introduction, "A preliminary common-sense definition of disability might be that it is a lack or limitation of competence. We usually think of disability in contrast to an ideal of normal capacity to perform particular activities and to play one's role in social life," (p. 3) and continue throughout the volume. Even with continuous redefining of disability there is a sense that there is a "Northern" view of disabling conditions, which is accepted by all. There is little exploration about the contentiousness of perceptions of disability exemplified in all aspects of American life, including organizations of and for people with disabilities. This may be attributable to the idealized status accorded the late Robert Murphy, author of a classic analysis of living with a disability in the United States, THE BODY SILENT. One chapter is excerpted from this work.
Murphy's status as an anthropologist and a person living with an acquired disability combined to make him an authority about disabling conditions. Unfortunately, he tends to be presented as the authority. Even when writing in the 1980s there were also others writing about life with a disability from other perspectives. But for the most part, these authors have been hidden in non-traditional publications and have yet to dent the mainstream, academic market. A distinct lack of knowledge about other colorful and scholarly authors such as Carol Gill, Harlan Hahn, Paul Longmore, Adolf Ratzka, and the majority of the work of Irving Kenneth Zola permeates the entire book. More disturbing is the assumption that what Murphy had to say in the late 1980s would stand unchanged in the mid-1990s. Murphy's own description of the liminal status of disability might just as aptly apply to his own work--standing at the crossroads between perceptions of disability as a negative condition making it difficult to function in society and today's refined idea of disability as a natural process of life which is not only not completely negative, but has characteristics non-disabled society could benefit from emulating.
The book provides extensive ideas about defining disability in various ways in "Southern" countries, despite its monolithic portrayal in the "North." In vivid contrast, the term, "culture" is never discussed.
Although all contributions are made by anthropologists who evidently intend to speak primarily with each other, it seems astonishing that there is no awareness of the vigorous ongoing debate over the use and concepts of "culture." In my own work, people seldom question how disability is defined, but are continually challenging how "culture" is employed. The conclusion I come to is that both concepts need to be explored individually and together in rigorous discussion. Key questions explored throughout the book are succinctly posed by Patrick Devlieger in "Why Disabled? The Cultural Understanding of Physical Disability in an African Society:"
Looking at disability from a cultural point of view starts with asking questions such as, what does disability mean in a certain society? How is the status of the person with a disability determined by the culture in which he/she lives? What are the most important issues when talking about disability in a certain society?" (p. 94)
The concept of rehabilitation itself, which is also painted as a unified concept without much shading, is one such issue. Despite the sensitivity and awareness demonstrated throughout the book that "Southern" cultures differ significantly from "Northern" ones there is almost no question that rehabilitation or Community-based Rehabilitation (CBR) should be exported to these countries:
If CBR can be perceived not as something new (author's emphasis)that mainly needs expertise from outside but as a way of mobilizing the community itself, it stands a much better chance of being sustained. This is the way the model is intended to be used, but because insufficient effort is usually put into examining these local communities before (author's emphasis) a program is started, it does not always turn out this way. (p. 192)
Within the United States especially there is currently a national debate over the efficacy of rehabilitation programs. People with disabilities who mobilized in an impressive fashion to advocate for the passage of the Americans with Disabilities Act are unable to form any kind of stable coalitions over this issue. While being sensitive to issues of other cultures perhaps we need to retrench and resensitize ourselves to our own culture prior to uncritical export of "Northern" institutions into "Southern" colonies.
Throughout the book is a theme of respecting cultural diversity and difference. Yet, in the final chapter, Susan Reynolds Whyte states, "rehabilitation emphasizes integration into a society of similar people through individual effort and social compensation, and the unspoken agreement to identify difference and pretend it does not exist..." (p. 273) As people within the "Northern" countries are becoming proud of our identity as individuals with disabilities and members of a disability community, perhaps that is a primary cause of rebellion against the rehabilitation system. It may also be a reason not to export rehabilitation to cultures whose diversity we claim to respect, and who, as frequently exhibited in this book, are already proud of who they are the way they are. Adapting the "Northern" way of rehabilitation may be of more benefit to the giver than to recipients.
Some essays include historical perspectives. But few authors delve earlier than the phase of individuals with disabilities leaving some sort of institutionalized setting to move into a seemingly integrated environment. There are frequent comparisons of "Northern" institutional rehabilitation entities with "Southern" pre-institutional rehabilitation life. Many authors contend that analyzing the more positive aspects of, for example, "Southern" family and community life could be beneficial to "Northern" countries. While we are exploring cultural diversity, we may want to explore our own diverse, cultural pasts and look at what life may have been like in pre-institutional days. We may have more to learn from the diversity of our own history than we can imagine.
DISABILITY AND CULTURE is a fascinating book, both for what is and what is not within its covers. The editors have accomplished a provocative study. Criticisms of it need to be tempered with the knowledge that it is one of the best compilations so far developed. Both interesting and provocative, it could serve as a textbook or an addition to a community library. The many gaps it contains shows more than anything else how much further we have to go to create a sturdy foundation of scholarly work in disability studies and to recognize that work that is already in existence, but difficult to access.
Final words come from Whyte's Epilogue, "Disability between Discourse and Experience," and reflect the content both of the book and of this review:
Do people with impairments accept the constructions of themselves that are offered? If they adopt the discourse, how do they transform it? Or do they resist it? In what contexts do they accept, ignore, contest, or rework a given discourse? (p. 268)
Reprinted with permission from DISABILITY & REHABILITATION, Biomedicine & Bioscience Journals Publisher, Taylor & Francis Limited, P.O. Box 25, Abingdon, Oxfordshire, OX14 3UE United Kingdom. WWW: www.tandf.co.uk/