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Tuesday, March 4, 2008

Disability in Local and Global Worlds

The new issue of *Lancet* includes a review of the book *Disability in Local and Global Worlds* edited by Benedicte Ingstad & Susan Reynolds Whyte (University of California Press, 2007; ISBN 0-520-24616- 4).
The review is by Lenore Manderson.
Here's the review:

How disability is made
On Dec 10, 2007, around 50 people gathered in front of Parliament House in Malaysia, to be shepherded into the observation gallery for the first reading of the Disability Act. The reading was brief but it was momentous --a linchpin towards protecting the rights of many Malaysians, including many of the people in the gallery, to take part fully in society. It is the social dimension of disability that informs Disability in Local and Global Worlds. More than any single ethnographic work, of which there are precious few, this work highlights the need to see disability through a social lens.

In this new collection, the distinctions of ability, inability, and disability are pushed beyond conventional expectations to encompass chronic degenerative disease, old age, genetic conditions, infertility, and customary practices. Ageing is not conventionally regarded as a disability, but it becomes so when infirmity becomes a reason for social exclusion. Similarly, having a chronic condition need not be a disability unless others begin to treat the sufferer with suspicion and their condition a harbinger of evil.

Cultures can create the bodily as well as social conditions of ability and inclusion. As Aud Talle shows in her discussion of female circumcision, women who live in Somalia are regarded as physically defective and so disabled if they have not been circumcised or infibulated, whereas in the UK they become disabled when they are subject to a doctor's gaze. In a different context, Nancy Scheper-Hughes and Mariana Leal Ferreiraa explore how Domba, a Suya tribesman living in Xingu Indigenous Park in central Brazil, is culturally disabled because of his refusal to wear a lip disc. This is why, his father believes, Domba has developed kidney disease. When he returns from Sao Paulo after a kidney transplantation, with another man's kidney and also parts of his soul, Domba is perceived to be further disabled. And so is the group of people connected to him by sex and kinship, who must all now adhere to certain food taboos and who all, because of the transplant, have become "part white".

This extraordinary tale of witches, souls, animal doubles, biomedicine, and Suya cosmology is but one of the compelling stories in this impressive collection. All the contributors challenge assumptions of what is "normal" and what is "disabled" by illustrating the importance of local context and cultural values. In Uganda, for example, Susan Reynolds Whyte describes how men, who because of polio, injury, or other physical problems cannot walk, had used tricycles to trade across the border of Kenya and Uganda, so maintaining their independence. But when tax and import duty collection began in earnest, they lost out to more agile traders who could smuggle along hidden, unsurfaced, and cycle- inaccessible paths. In this way, the men with the tricycles became disabled.

Bodily appearance or function--from birth, accident, disease, or ritual-can enable in one setting but disable in another. Our task, as the contributors to Disability in Local and Global Worlds show, is to remain mindful of such local inflections, institutions, and systems and remember that disability is created, reinforced, or removed through social and cultural action.

Anne Lamott, quoting a friend's 5 Rules For Living:
1. Be born perfect, without imperfection or any significant differences from the majority that might make others uncomfortable.
2. If you have imperfections or are different in any way, get it fixed immediately.
3. If you can't get it fixed, at least act as if it has been fixed.
4. If you can't act as if it has been fixed, then don't show up.
5. If you must show up, at least have the decency to be ashamed.

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