French Experts' Cool Gaze at New WHO Disability Classification
By M. Miles (m99miles@hotmail.com)
The latest double issue of the French academic journal Handicap - Revue de Sciences Humaines et Sociales [1] is dedicated to examining the process of revision of ICIDH-2 and the curious emergence of the 'compromise version' of ICF (International Classification of Functioning, Disability & Health) adopted by the World Health Assembly in May 2001, together with reflections on some different francophone approaches to taxonomies of disability.
The journal is published by France's Centre Technique National d'Études et de Recherches sur les Handicap et les Inadaptations, at Paris, one of eight WHO Collaborating Centres to engage in revising the old International Classification of Impairments, Disabilities, and Handicaps. [2] English-speaking countries have maintained a strong language dominance in the revision process, with France almost the only country to expect its own language to be taken seriously as a vehicle for communication. This French 'resistance' is sharpened by the fact that the word 'handicap' (in English) was practically abandoned by the anglophone world during the 1990s and has disappeared from WHO's new classification, whereas the French word 'handicap' remains the principal term representing what would be called 'disability' (or sometimes 'disablement') by anglophones. [3]
Runners in The Great Handicap Stakes
The chief editor of Handicap, Catherine Barral, gives a frank account of the revision process (pp. 1-23), with a fascinating racecourse commentary. Starting around 1992, some Collaborating Centre horses galloped off in more or less the same direction with the goal of improving ICIDH. By 1995 we hear of more horses joining the race, which is now being run on several different routes simultaneously, while bookies are taking side bets on some unexplained features that the original runners are never told about. By 1997 the horses are being randomly tested for deviant thinking, and they have been joined by a troupe of bears juggling statistics, and some elephants on bicycles. The stewards set the finish at 1999, but as the runners near this line it is suddenly hoisted onto a lorry, which speeds off into the distance. Finally, as the weary creatures jump the last fence and turn into the finishing straight, their course is blocked by a brace of camels balancing on their humps and waving their legs in the air. To the consternation of all, a third camel appears on the far side of the obstruction and canters away to pass the finishing post and lift the prize amidst public acclaim.
As they trundled along down the decade of ICIDH revision, the French-speaking horses spent some time discussing philosophy, logic, and what to have for dinner. They also delegated one colleague to produce a linguistic analysis of the meaning of the final goal, i.e. an international disability classification, in terms of (A) a scientific tool; (B) a stuffed parrot. That task was given to Christian Rossignol [4], and a digest of his learned report appears in this issue of Handicap, pp. 51-93, with title translated as "Can the Classification Called ICF, proposed by WHO, Be of Scientific Value?" Briefly, his answer is "Non!"
Taxidermist or Taxonomist?
The preparation of a dead parrot by a taxidermist has as its goal that the parrot should be stuffed and mounted so as to present the appearance of the real thing. In contrast, for the preparation of a classification that will be of scientific value, one should engage a taxonomist who will produce the real thing rather than something that has been stuffed to give a pseudo-scientific appearance. Perhaps WHO participants were confused about whether they really wanted a scientific classification, or would find it simpler to have a stuffed parrot.
The general public can normally be expected to prefer the parrot, and displays some naive wisdom in this choice. A stuffed parrot can be dressed differently for any occasion. By the ingenious insertion of a micro-cassette and battery, it can repeat whatever its owner wishes it to say, in whichever language. A drawback is that the stuffed parrot continues to repeat, "It's a fine day! It's a fine day!" even though a glance at the window shows the rain pouring down. However, the public accepts this fault in weather forecasters, so why not in stuffed parrots?
Dr Rossignol nowhere actually calls the ICIDH-2/ICF a stuffed parrot, but he devotes much of his long article (and even more of his original reports in French and in English) to showing how and why the parrot is "severely disabled by congenital malformations which were known from early on and were exacerbated by its chaotic pregnancy and forceps delivery" (p. 52, translation). He details the clandestine addition of spin, the faulty translations, revisions where the parrot was merely given a new hair style and tail feathers, and the cover-up of problems by removal of explanatory material (pp. 54-55). None of these games could disguise the inherent flaws. The fundamental terms and categories of the ICIDH-2/ICF lack clear and stable definitions, and are not organised hierarchically. Either the terms were not defined at all, or the definitions were circular or overlapping, and they were washed forward on a tide of pseudo-scientific jargon, a vague, politicising rhetoric that defies penetration, resorting to desperate and sometimes ridiculous measures to sustain itself (pp. 62-63, 78, 87-88). Such explanation as the WHO team gives of the model and methodology of their classification, according to Rossignol (p. 88), seems to derive from a failed attempt to digest the contents of an elementary textbook on taxonomy. (This is quite a critical report…)
The advantage of having the 'conceptually anglophone' ICF scrutinised by native users of French is that they are less likely to confuse themselves by over-familiarity with the basic terms, and are not easily brow-beaten into thinking that perhaps their own language does not contain enough terms to convey the subtleties of English. To readers who are habitual users of English, the sentences and paragraphs of ICF might appear to run fairly smoothly; so any failure of understanding could be referred to one's own stupidity, which is best not advertised too widely. It is a different story when the whole thing is translated with the idea of making sense to French intellectuals (who, unlike many of their European counterparts, do not spend half their time thinking in English). One is not fully aware of what one has written in English, until someone else tries to put it into French.
Comparisons
Two papers in this issue give comparative analyses of ICIDH-2/ICF and the "Quebec Classification" known as "Handicap Creation Process", associated with Patrick Fougeyrollas and colleagues [5]. The philosopher and historian of disability, Henri-Jacques Stiker (pp. 95-109), constructs an anthropological analysis sketching some differences in the conceptual worlds underlying these two classificatory tools. Perhaps inevitably, both have the limitation of describing and measuring only what is quantifiable. The person under examination is liable to appear two-dimensional, lacking an interior, devoid of passions, history or conflict, almost bereft of any soul (pp. 102, 104). The Quebec Classification does go beyond the snapshot and provides for the accumulation of a portrait with development over time. Both tools are firmly situated in 'modern, western' models of society, but Stiker finds some underlying differences in terms of tendencies toward "neoliberalism à l'américaine" or toward "solidarity à la française". The second comparative paper, from the Institut canadien d'information sur la santé (Canadian Institute of Health Information), presents detailed results of a practical survey in which 524 participants (including some disabled people) used the tools and reported on their strengths and weaknesses (pp. 111-131).
Professor Stiker refers appreciatively in his paper to the contribution by Serge Ebersold (pp. 149-164), which outlines some of the implications of the switch (at least at the rhetorical and terminological level) from handicap and disadvantage to "activity and participation". Earlier ideas of integration of the disabled person within the solidarity of their local and national communities, being accepted perhaps at a lesser valuation but nonetheless having their role and social membership, are being replaced by an individually participatory model in which 'difference' is accepted but value is deemed to be equal. This could be a real advance - especially if it were ever the case that resources would be forthcoming and living environments significantly redesigned so that opportunities were also equalised. Yet the new thinking sometimes assumes an exaggerated kind of western individualism, paddling its own canoe through an appropriately adapted environment, taking its own risks, making its own choices, carving out roles and reinventing them whenever necessary, and enjoying (or suffering) the consequences. Such a mode of life would be considered a form of madness in many of the world's human communities, and a burden by many disabled people within western communities. Those who can rise to the challenges are welcome to it, but they are not so welcome to generate these risks for everyone else and require them to be dynamic, self-starting players.
Permanent Struggle
The WHO team sidestepped, leapt over, or gave token accommodation to the critical reports presented to it earlier. The French objections were ignored and buried. The (western) professional world is slowly picking up the over-ambitious, flawed and euro-centric tool that resulted, and will in due course rediscover all the problems. [6] Given the difficulties involved, the final document turned out at least to be quite interesting. It's still not the answer to anything, but that may be because what was being asked was everything. Multi-limbed, inter-cultural and basically impossible schemes like this soon develop a life of their own, far beyond the control of the individuals who thought they were driving them. The task grew and morphed into something that could not be controlled or accomplished within the time and means available. It's very doubtful whether it can be done at all, even with another 30 years' work; but some of the participants argue that it can be done, and shall be done. (And the world must pay for it to be done, and stop asking awkward questions).
Notes
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Handicap No. 94-95, April-September 2002, vi + 167 pp., from the Centre Technique National d'Études et de Recherches sur les Handicap et les Inadaptations, Paris. http://perso.club-internet.fr/ctnerhi/
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Other centres are in Australia, Canada, France, Japan, Netherlands, Sweden (for the Nordic countries), UK, and USA. The journal gives their addresses on p. 41, but lists "Royaume-Uni" (United Kingdom) twice, for both an address in England and an address in the USA. The "États-Unis" (USA), in fact won independence from the UK more than 200 years ago, and should now be listed separately.
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The earlier title in English, "International Classification of Impairments, Disabilities and Handicaps", appeared in French as "Classification internationale des handicaps: déficiences, incapacités, désavantages", making 'handicap' the umbrella word in French. The new title in French is "Classification internationale du fonctionnement, du handicap et de la santé".
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Dr Rossignol is Research Director at the Laboratoire Parole et Langage, Université de Provence, Aix-en-Provence.
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See e.g. P Fougeyrollas & L Beauregard (2001) Disability. An interactive person-environment social creation. In: GL Albrecht et al (eds) Handbook of Disability Studies, 171-194. Thousand Oaks: Sage Publications.
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Ongoing news of ICF is available in the Newsletter on the WHO-FIC, from the National Institute for Public Health and the Environment, also downloadable as pdf file from: http://www.rivm.nl/who-fic.
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