ICIDH Meets Postmodernism, or 'Incredulity toward Meta-Terminology'
By M. Miles (m99miles@hotmail.com)
After heroic linguistic labours by the World Health Organisation and collaborators during the past decade, the World Health Assembly in May 2001 will have a chance to nod its approval of the new version of ICIDH, the International Classification of Impairments, Disabilities and Handicaps. This is when ICIDH is supposed to give way to the lovely, cool, refreshing new terminology of "Impairments, Activities and Participation". To avoid any possible confusion, the new version will be known as the International Classification of Functioning, Disability and Health, or ICIDH-2.
Decent and Edible
The impulse to classify people in Indo-European societies can be traced back at least as far as ancient India, where it was important to know whether one was dealing with beings who belonged to settled human society and were of consumable quality, or belonged to the jungle and were unfit for decent society or consumption. The Indologist Brian K. Smith has shown how the latter could be considered as half-human, dwarf, ape or human manqué, if they fell outside the Aryan settlements and weren't good to eat. [1] At a later period, perhaps the middle of the first millennium B.C., a Jaina author issued one of the earliest known cautions on disability terminology, in the Akaranga Sutra:
"A monk or a nun, seeing any sort (of diseases), should not talk of them in this way: 'He has got boils, or leprosy, &c.' [Note: this '&c.' calls up earlier lists adding 'consumption, falling sickness, blindness and stiffness, lameness and humpbackness, Dropsy and dumbness' and so forth], 'his hand is cut, or his foot, nose, ear, lip is cut.' For as all such people, spoken to in such language, become angry, hence, considering well, they should not speak to them in such language." [2]
A little later still, fines were prescribed in the Arthasastra as punishment for using abusive, hurtful or politically incorrect terms with disabled people. Calling someone "by his right name, such as 'the blind', 'the lame', etc." attracted the lowest level of fine. In a case where "the blind, the lame, etc., are insulted with such ironical expressions as 'a man of beautiful eyes', 'a man of beautiful teeth', etc", the fine was four times higher. [3]
The capacity of disability terms to give or reflect adverse shape in thoughts and feelings has had a long and eventful history since Indian antiquity, but has been neglected as a field of knowledge, probably in all regions. Studies in the 20th century run from H.-M. Fay's philological notes on "Cagots, Gaffos and Cassots" in France of 1905, to the work of Judith Abrams on disability in some 1500 years of Jewish historical texts [4, 5]. Terminological deliberations at Geneva, being on a 'scientific basis', naturally omitted reference to these earlier discussions, political measures or cultural studies.
Earlier I-D-H
The use of 'Impairment, Disability and Handicap' as an ordered series appeared at least as early as 1958 in the work of the U.S. Rehabilitation Codes Advisory Committee coordinated by Maya Riviere of the Association for the Aid of Crippled Children, New York. The work of Riviere and colleagues aimed at a system of classification that would bring into focus the positive assets of blind people, such as education and experience, and potential for a future independent life. Existing terminology exemplified by the U.S. Surgeon General's draft code, and the attitudes embodied in it, were denounced by Riviere as:
"just the kind of labeling which the project intended to jettison, in desiring to re-orient professional attitudes and services towards individualized evaluation of the person as a human being, rather than the possessor of some detrimental condition." [6]
This vigorous rejection of a 'deficit model' by professionals in the rehabilitation field in the 1950s may surprise those who suppose that such views were discovered two or three decades later. Certainly, Riviere and colleagues seem to have been innovative in their time. Yet it is quite possible that the I-D-H series may have originated even earlier.
The World Health Organisation incorporated the I-D-H terminology into its International Classification of Impairments, Disabilities and Handicaps, which was approved in 1976 and formally published in 1980. It was the fortune or misfortune of this instrument to be launched onto the slowly rising tide of postmodernism, in which all grand theories are automatically suspected of being somehow male, monocultural and probably malevolent. Not surprisingly, the ICIDH was targeted early as a new form of oppression, easily associated with eugenic experiments, gas chambers, IQ testing, Disability-Adjusted Life Years, and efforts to remove the unfit from a world that should be run by mentally and physically superior males. The comparatively innocent origins of I-D-H, i.e. an effort to envision disabled people as full human beings rather than possessors of something nasty, disappeared rather quickly with the addition of "International Classification" at the front. It was also difficult to deny any taint of the 'biomedical model' in ICIDH, when it was issued by an organisation whose middle name was "Health".
A more detailed and perhaps more solemn analysis of the childhood and youth of ICIDH, and the problems into which it ran, has recently been produced by the strong international team of Jerome Bickenbach, Somnath Chatterji, Elizabeth Badley and T. Bedirhan Üstün, who have been heavily involved in development and testing of the new version ICIDH-2. [7] They outline some of the criticisms of ICIDH by advocates of SMODs (Social Models of Disability). They also expose some of the problems encountered by SMODs, which have merits as political slogans and advocacy tools but hardly lend themselves to the generation of research evidence. Whether intentionally or not, the team also reveals the extent to which the development of ICIDH-2 has been influenced by the need to be (or to appear to be) responsive to criticisms particularly by Disabled People's Organisations, while still preserving a strong biomedical basis. Thus,
"The ICIDH-2 embodies what is now termed the 'biopsychosocial' model, a synthesis of the medical and social approaches to disablement. Each dimension of disablement is conceptualized as an interaction between intrinsic features of the individual and that person's social and physical environment." [7]
Point Of No Return
That publication by Bickenbach et al was lucid and well argued, but the year of its appearance, 1999, seems to have marked a turning point. Revision of ICIDH had been under way since 1990, with collaborating centres in Europe and North America and a modest number of individuals from elsewhere. Among participants listed in the Beta-1 draft revision (1997), non-European and non- North American countries were represented by Australia (3), Ethiopia (1), India (4), Japan (3) Jamaica (1), Jordan (1), Kuwait (1), Morocco (1), Thailand (1), Tunisia (2), Uruguay (1), making 19 out of a total of 177. Not surprisingly, the Beta-1 draft continued to embody a number of fundamental concepts and assumptions that are basic to the way the 'western world' represents itself as central to the universe and perceives its cultures as normative for everyone else.
Nevertheless, the World Health Organisation has had much experience of field-testing materials in countries with strong, non-western cultures, and of trying to incorporate cultural and conceptual difference and, consequently, has some recognition that western middle-class values are not universally admired or desired. It was claimed that ICIDH was "being created in a transcultural way in a number of languages in order to develop the best international terminology", with concurrent testing for "cultural applicability and standardization of concepts." Among the "Novelties introduced in the ICIDH-2 Beta-1 Draft", 'Disabilities' was replaced by the 'Activities' dimension, and 'Handicap' was reformulated as 'Participation', giving a positive spin to both. More ominous was the cheerful assertion in the Introduction that a number of key terms would be "used with specific meanings that differ from their everyday usage", and that the aim would be to "provide a unified and standard language to serve as a frame of reference for the 'consequences of health conditions'."
These statements are still comprehensible, in the sense that one can see what the WHO team was looking for. Yet it is also clear that the team was launching forth upon the uncharted currents and reefs of an ocean of anthropological, sociological, religious and philosophical issues, terms and arguments. The hope was that the achievements of the scientific world in building and maintaining a closely defined and globally controlled biomedical vocabulary could be extended to encompass such loose and floppy experiences as how ordinary people in different parts of the world think, feel and act around their bodies, their infirmities and their relationships with one another. Oh dear... The anthropology of disability is in its infancy as a recognised field of study; but the available literature, even if modest in quantity, should have sufficed to caution the WHO against imagining that any broad consensus would be achieved in less than a century or two of work. [8]
The Unspeakable in Pursuit of the Incredible
The 1999 final draft Beta-2 version of ICIDH-2 was received with great interest in various parts of the world; yet already in October 1999, the Dutch national organisation collaborating on ICIDH revision remarked in its newsletter that:
"we feel that a discussion on the Classification of Participation is of the greatest importance if we want to prevent [that] that classification will suffer the same fate as the Classification of Handicap: That is to be badly defined and unclear by itself. Consequently users will tend to interpret the classification as they feel like and apply it according to their own wishes at the expense of the unity of the language and comparability of data." [9]
Using the goods the way one feels like using them, regardless of what the manufacturer intended or said in the handbook, is a human right so fundamental that even the United Nations has never bothered to write it down. This applied to ICIDH-2 with all the greater inevitability once the collaborators got the green light to translate it into their own languages, and thereby to begin to roll it around their tongues and adjust and reformulate it in their own conceptual terms. The whole of the 20th century was spent discovering the intimate connections between concepts, thought processes and the language available for building them. The proverb "Traduttore tradittore" (the translator is a traitor) has never had better evidence. In your own language, you can really kick an idea around the back yard and see how it bounces. This is what the ICIDH revision collaborators have done in the past few years, and a lot of differently shaped ideas have resulted.
What seems to have happened next is a process familiar to senior planners and global document revisers in many fields: after a protracted period of ponderous deliberations, during which great care is taken to hear many points of view, the central document becomes quite complicated with all the additions and Ptolemaic epicycles. More seriously, it diverges from the original aims, promises and guarantees. Meanwhile deadlines loom closer, and those centrally involved start to notice that what was designed as the finest thoroughbred horse now begins to look remarkably like a camel. The time for listening closely to everyone has gone past. As the difficulties become more complex and require more careful thought, there is instead a pressing need to take action faster and with less pondering. It becomes necessary to persuade people that a camel is what they really needed and wanted all along: it's far better than the horse they had before, it can be used in more ways.
The difficulties of selling a camel to a single prospective horse-buyer are not negligible. Where the program has developed (as ICIDH-2 has done) to the point where you have a short and a long version of the design (one hump or two humps) and you have translated the design documents into 17 languages and are negotiating the speed tests of the two types of camel across different sorts of sand, snow, earth, air, fire or water, the problems become considerable. The moment arrives when you must go for broke and assert that design perfection has been achieved, and production must go forward. The blurb for a new WHO promotional publication breathlessly asserts, "ICIDH-2 is expected to revolutionize care of disabilities."
Son of Babel
The WHO team seems to imagine English as a sort of free pool from which scientists can fish out terms for their own redefinition and use. After playing around for a few years with 'disablement' as an umbrella term, they finally came back to using the word 'disability' "as an umbrella term for impairments, activity limitations or participation restrictions". (ICIDH-2 'Introduction'. See http://www.who.int/icidh/intro.htm). Everyone's going to love them for that. WHO also decided to stop being shy about its middle name: ICIDH-2 frankly confesses to being about health domains and health-related domains. It "systematically groups different domains for a person in a given health condition (e.g. what a person with a disease or disorder does do or can do). It is one of the 'family' of WHO classifications, which provide "the language to code a wide range of information about health".
Further, WHO reasserts the idea that people with disabilities are people. It wishes to correct:
"the widely held misunderstanding that ICIDH-2 is only about people with disabilities; in fact, it is about all people. The health and health-related states associated with all health conditions can be described using ICIDH-2. In other words, ICIDH-2 has universal application."
This does not mean that all horses are camels, or vice versa, even when translated into languages where both beasts are unfamiliar. But the relation of the ICIDH-2 coding language to everyday reality can be further illuminated by its explanation of the use of 'body':
"2. 'Body' refers to the human organism as a whole; hence it includes the brain and its functions, i.e. the mind. Mental (or psychological) functions are, therefore subsumed under body functions. 3. Body functions and structure are classified along body systems; accordingly body structures are not considered as organs."
That's what the WHO is offering to the people of the world. So much for the mind! So much for René Descartes, and for 3000 years of Indian philosophy on the mastery of the body by mental concentration. So much for missing organs. And in case you thought you might be able to figure some of this out for yourself, and do so in your own language and thought-forms, ICIDH-2 cautions that "Users are strongly recommended to obtain training in the use of the classification through WHO and its network of Collaborating Centres." This one must not be kicked around in your back yard. It has come a long way since the WHO Note for the Press No 19 of 20 August 1999, where one of the aims of ICIDH-2 was "to improve communications between health care workers, other sectors, and disabled people / people with disabilities."
The End of the Beginning
The World Health Assembly is unlikely to have had much training in the use of ICIDH-2, and is likely to nod it through along with a pile of other more or less incomprehensible documents. Then the next decade of field-testing and revision can begin. The attempt to construct a specialised, controlled coding language with universal application, by which people in white coats can describe aspects of the human condition and make more accurate comparisons of attempted solutions, adjustments or redesigns of the environment, is for the most part a worthy enterprise. It will be all the worthier, and less liable to generate cries of anger and paranoid reactions, if its users and developers are encouraged to explain their work and their intentions in ordinary language, using well-known words in their everyday sense, to the other six billion people on the planet. Perhaps the code can yet be cracked.
References & Notes
1. B.K. Smith (1992) Classifying animals and humans in ancient India, Man 26: 527-548.
2. H. Jacobi (transl.) (1884) Gaina Sûtras, Oxford: Clarendon, pp. 152-153 (and enclosed note 'imported' from pp. 53-54).
3. R. Shamasastra (transl.) (1923) Kautilya's Arthasastra, 2nd edition, Mysore: Mysore Printing & Publishing, p. 236 (= Arthasastra 3.18).
4. H.-M. Fay (1905) Notes pour servir à l'histoire de la lèpre en France. Les Cagots, Gaffos et Cassots. Bulletin de la société française de l'histoire de la médicine IV: 69-109.
5. J.Z. Abrams (1998) Judaism and Disability. Washington DC: Gallaudet University Press.
6. [M. Riviere, 1970] Rehabilitation Codes. Classification of Impairment of Visual Function. Final Report 1968, [U.S. National Institute of Neurological Diseases and Blindness].
7. J.E. Bickenbach, S. Chatterji, E.M. Badley, & T.B. Üstün (1999) Models of disablement, universalism and the international classification of impairments, disabilities and handicaps, Social Science & Medicine 48: 1173-1187. (See p. 1183).
8. See e.g. the range of work in: B. Ingstad & S.R. Whyte (eds) (1995) Disability and Culture, Berkeley: University of California Press; and in: B. Holzer, A. Vreede & G. Weigt (eds) (1999) Disability in Different Cultures. Bielefeld: Transcript.
9. Editorial (1999) RIVM Newsletter 2 (3) 3. Published by the National Institute of Public Health and the Environment (RIVM), Bilthoven, Netherlands. Accessible on site at
http://www.rivm.nl/publichealth/whocc-icidh(This site also offers a zip file listing nearly 2000 published papers or documents on ICIDH and its revision).
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