Book Reviews: Two New International Collections on Disability & Culture
By N.D. Wyteman (ndwyteman@aol.com)
M Priestley (ed) (2001) Disability and the Life Course. Global Perspectives. Cambridge University Press. www.cambridge.org. xix + 252 pp. isbn 0521797349.
TB Üstün, S Chatterji, JE Bickenbach, RT Trotter II, R. Room, J. Rehm, S. Saxena (eds) (2001) Disability and Culture. Universalism and Diversity. Seattle: Hogrefe & Huber. x + 328 pp. isbn 088937239X.
These books are part of a minor industry aiming to get a fix on disability around the world, mostly within euro-american academic research paradigms with a garnishing of live, inside stories from 'other cultures'.
Mark Priestley introduces chapters from five disabled adults born in India, Estonia, Japan and the US, plus 19 non-disabled researchers working in Russia, Western Europe, North America, South Africa and Australia. Three of the disabled people lecture in universities; the other two have been involved with university research. The age group seems to be 28-60. The language is English. Priestley notes that, "the academic literature of disability studies consistently privileges minority world accounts (especially, those from Western Europe and North America)." (p.3) The next phase predictably will privilege anglophone accounts from people who have third world credentials but have entered the western academic orbit, still hugely distant from the lives of the great majority of disabled people.
Some chapters nonetheless make an original contribution. Swapna McNeil's personal 'journey of discovery' is replete with politically incorrect and contradictory statements from life. She was born in Bihar with albinism, to a Hindu family that knew nothing about her condition. However, "My grandfather had been chief medical officer and my uncle was a doctor. So I was in a medical environment and that must have made a positive impact." (p. 79) McNeil attended "the best chain of girls' schools in India" (p. 81), and proceeded up the food chain as far as Leeds University in England. Accustomed to colour prejudice in India, she had the unusual experience of being acceptable in England. "Because of my skin colour, nobody made me out to be different" (p. 85). The same applied to her visual impairment, which she managed to conceal, feeling it was nobody else's business. Consequently, "I had lived in England for seventeen years and had never heard anything about services for blind people." In her 40s, after meeting some blind people, McNeil gradually learnt how to be a disabled person, perhaps too late in life to pick up the full theoretical jargon.
McNeil's view of Indian pedagogy (influenced by the best chain of girls' schools?) is that
"Back home [in India] if you had the ability they would try to develop that. Education has to be a priority. The opportunities are simply not there for disabled children in England and the schools are not interested in developing them. I am not sure whether it is society that makes people like that, but it becomes an ever-decreasing circle where everyone suffers." (p.87)
Such a positive view of education in India contrasts sharply with that of Anita Ghai, a university psychologist with physical disability at Delhi:
"Integration is an illusory concept in a country where schools continue to marginalise children for being different. A low caste girl child for example has enormous difficulties in securing education. Children with significant impairments are trapped within a school culture that has no place for them. Inclusion and integration are difficult concepts in a culture embedded in discrimination." (p.32)
Perhaps these two critical and perceptive disabled Indian women could have ironed out a few wrinkles if they had seen each other's chapter.
Staggering under the Rhetoric
Sue Philpott & Washeila Sait focus on disabled children, noting (p. 152) that among 39 million South Africans "a staggering 44.24 per cent of the country's population" are below 18 years of age. (But UNICEF data suggest that in the rest of sub-Saharan Africa more than half the population is below 18). They also point out that South Africa has "some of the most progressive disability policies in the world". The only problem is that progress "remains by and large at the level of rhetoric" (p. 154), a phenomenon well known across Africa and the rest of the world. The 'life course' approach looks different when the average life lasts 44 years rather than 88....
Also from South Africa, Ruth Morgan is excited about life stories. From three narratives she selects parts that underline current agendas of (non-disabled) disability advocates, allegedly "to empower the narrators through the process of telling their stories" (p. 90). One of these stories is of an African woman, [T], formerly a journalist and political activist. Now [T] "perceives herself to have twenty per cent of the capacity that she had before her stroke." (p. 92) Eighty per cent of her memories, abilities and life have been blanked out by aphasia according to [T]'s understanding. Morgan knows better: [T] "does not realise that it is in fact the larger society that is exacerbating her impairment." (p. 93) There is something odd about the 'empowerment' of [T] by having her reduction to 20% retold with sociological commentary. Is society disabling, or is it sociology?
Victim Baggage
The question recurs in Devorah Kalekin-Fishman's chapter, reminiscing on "the hidden injuries of 'a slight limp'". Fishman knows that as "as a woman, a Jew, dark-skinned, born into a poor family of immigrants from East Europe", she already had a lot of victim baggage for life in the USA, without needing a limp. This was highlighted at school by another girl, Jean, who "with a bad case of acne and a really bad limp was bright, an officer of the student council, unafraid to pace the length of the assembly hall in order to walk up on the stage and address all the teachers and the girls" (p. 141). Jean was not carrying all the other baggage, so had the confidence to carry off her impaired foot. Devorah had such confidence in the right context, the Zionist youth movement where "it all came together, and even my body fitted", though not to the extent of long country hikes (p. 141). Throughout emigration to Israel, marriage, children, university lecturing, the limp cast a shadow in her own mind, until older years came. Now "the slight limp finally fits me nicely into a socially approved place." (p. 146) As a researcher with sociological interests, Fishman stirs some theoretical reflections into her story; but so far as the 'social model' is concerned, it might have been her own socialised mind that turned her impairment into a disability, rather than the minds and attitudes of 'the others'.
Remarkable too is a minor item in Elena Iarskia-Smirnova's account based on interviews with Anna Vassilievna, a Russian woman disabled in infancy. Stories are commonplace of the anger and contempt of disabled Europeans at having money thrust into their hands by street passers-by; but Anna succeeds in getting outside her own 'disabled' skin and understanding something about her fellow Russians: "she accepts these charitable moments without irritation because it helps people to find peace in their own souls." (p. 105) This acceptance of the needs of able-bodied people contrasts with the black-and-white story by Kaido Kikkas, born with cerebral palsy in Estonia. "This was the USSR, a state that officially denied the very existence of disabled children." (p. 113) What does Kikkas intend by this notion, flatly contradicted not only by Iarskia-Smirnova in the same book, but by several chapters, well documented from Soviet sources, in McCagg & Siegelbaum (1989)? Kikkas follows with the practical impossibility "for disabled children to attend school with their peers" (p.115); yet on the next page, "We decided to try for a mainstream school and, to our surprise, I was accepted quickly and got on well."
Mairian Corker uses her chapter pertinently to muse on over-dominant agendas in some of her earlier writing on deaf lives, and the danger
"if we allow ourselves to be led by narcissistic agendas that distort the richness of lived experience that changes over time, and limit the range of interpretations and understandings that are possible in the interests of preserving epistemic orthodoxy". (p. 132)
Corker should perhaps have lent a hand editing this book. She describes her efforts as a counsellor, to "believe unconditionally and be alert for contradictory information" (p. 132); i.e. the counsellor may feel that unconditional acceptance is a necessary pose, without switching off her critical intellect. Book editors too might like to consider whether maintaining an unconditional critical intellect, without diminishing the warmth of welcome to life stories (preferably first person), would in the long run serve the disability movement more effectively.
Revisiting Attitude Studies
To learn about the behaviour and attitudes of 'the public' toward disabled people, one can ask for self-report from several hundred members of the public; or ask people on the receiving end of public behaviour. Such studies had a vogue in the 1970s and 1980s, but either approach is plagued by sampling problems and subjectivity, both in the awareness of what other people think they are doing and in the honesty of assessing one's own part. A tougher method sometimes leading to more plausible data is to set up situations where spontaneous behaviour is seen and noted, e.g. the study of street assistance offered to apparently disabled strangers in 23 cities across the world, by Levine et al (2001). The latter are experienced cross-cultural psychologists; their design and discussion indicate a serious awareness of pitfalls and possible flaws. To conduct such studies cross-culturally with samples large enough to produce convincing results does however require a great deal of careful work.
In the cross-cultural applicability research (CAR) study at 18 centres across the world described in 'Disability and Culture', edited by T. Bedirhan Ustun et al (details above) with over 50 contributors, a great deal of work was done; yet many questions remain about the outcomes. The exercise was shaped (or distorted) by conflicts between certain universalising beliefs on the part of the WHO organisers, and roughly a century of euro-american linguistic studies together with an accumulation of research on the part of doubters such as Benedicte Ingstad, Susan Reynolds Whyte, Nora Groce and other distinguished anthropologists of disability and health. The aim of the CAR study was to produce evidence, or at least to demonstrate that evidence could be produced, for a 'universal construct of disability', so that 'disability' could be classified and assessed trans-culturally with a good level of consistency, thus underpinning the field-testing of the new version (ICIDH-2) of the International Classification of Impairment, Disability and Handicap (now known as ICF).
The first and last chapters of the book run through some of the arguments but do not so much refute the doubters as simply dismiss them. Even this is done in such an amateurish way as to raise further doubts. The editors claim that "data presented in this volume make it abundantly clear that the radical position of complete and non-remediable incommensurability of the disability concept across cultures is radically mistaken ... the results reported here make it apparent that the radical position is likely to be false or at least unjustifiable on the evidence." (p.319) All that is clear from this two-tone statement is that the authors are uncertain of their own ground. The part omitted in the middle modestly admits that, "the work reported here is preliminary"!
The methodology of the CAR study will certainly come in for close scrutiny, starting with the idea that the "best possible informants within each culture" must be "prototypical" representatives, or "people selected as spokespersons for their cultures" (pp. 19, 35). In Cambodia, for example, the views of 11 million mostly rural people were given by 17 selected "key informants" all of whom "worked in international or national organizations addressing disability, with 40% being case workers, 35% teachers or trainers, and the remaining 25% working in the management of disability programmes" (p.71). Some disabled Cambodians took part in a focus group. The Cambodian reporters sensibly admit that the findings "are based on a limited sample of participants and should not be generalized to all individuals with disabilities in Cambodia" (p.84). Throughout the Asian and African country reports, recurrent problems surfaced of translating and understanding the disability concepts in the research materials, of their applicability to all sections of society and to either gender; and of whether the handful of 'representative spokespersons' really could speak for all the languages and cultures represented among, for example, one billion Indians, 110 million Nigerians, or 65 million Turkish people.
Cards in Life's Casino
Each study site was asked to play a kind of party game with 30 people chosen as "broadly representative of the viewpoints associated with disabilities in the culture" (p. 44) - such viewpoints apparently being already known at the start. The game consisted of sorting 90 cards, each presenting one item from the ICIDH-2 classification (translated where necessary), into any number of piles, according to perceived similarities or differences. Doubts and confusion abounded across the various nations and cultures. Even the British participants, who could be expected to have a fair grasp of English, complained that the language on the cards was "very American" (p.241). Most study sites had problems with the umbrella term 'disablement'. That was easily fixed: "the term was replaced by a more common term - "disability" - as the new umbrella term (p.310). Problem solved... (apart from the slight difficulty that the term 'disability' has for 30 years been one of the biggest battlegrounds between 'medical' and 'social' terminology!)
'Disability and Culture' makes an interesting read, with some fascinating data from countries poorly represented in the anglophone disability literature. There are league tables of more and less popular disabling conditions and diseases, from which people can weigh up their own victim baggage. There is also some unintended hilarity in the contrast between the local contributors' frank reporting of research difficulties and the editors' efforts to smooth over the problems and to usher in a new, global language of disability assessment (to be called Disperanto?) Readers will decide for themselves how seriously to take the data, and how much annoyance it would be appropriate to display; but disability anthropologists, ethnographers or historians need hardly fear that this report will oblige them to pack their bags and leave town.
References
Levine RV, Norenzayan A & Philbrick K (2001) Cross-cultural differences in helping strangers. J. Cross-Cultural Psychology, 32: 543-560.
McCagg WO & Siegelbaum L (eds) (1989) The Disabled in the Soviet Union. Univ. Pittsburgh Press.
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