Histories of cochlear implantation

Social Science & Medicine 49 (1999) 1257±1268

www.elsevier.com/locate/socscimed

Histories of cochlear implantation Stuart S. Blume* Department of Science and Technology Dynamics, University of Amsterdam, Nieuwe Achtergracht 166, 1018 WVAmsterdam, The Netherlands

Abstract The cochlear implant, an electronic device by means of which some totally deaf people can be provided with a form of hearing, has been increasingly used since the early 1980s. The mass media have typically presented it as an example of the remarkable success of modern technological medicine. In France and the Netherlands, the countries on which this paper focuses, as in many others, deaf communities have rejected the technology. They have protested at its use with deaf children in particular. Rather than locating it in a history of medical progress, they have located it within a history of their own oppression. Each historical rendering is used to try to in¯uence policy. The contest, however, is an unequal one. # 1999 Elsevier Science Ltd. All rights reserved. Keywords: Deafness; Deaf history; Sign language; Children; Medical technology; Health policy

Introduction Medical pioneers, clinicians working at the scienti®c and technical forefront of their speciality, rarely have much time for doubters. Moved, according to their own interpretations, by the desire to help patients whose desperation they cannot ignore, they try to do all in their power to push forwards the frontiers of what is medically possible. When we read their stories, or accounts of them published in the newspapers, we too are moved. We applaud. We donate money to medical charities. Not only are we moved by the plight of a su€ering fellow human being, but we too want to believe in the capacity of medicine endlessly to move forwards. For nearly a century medicine has rested its claim to ecacy, and its promise of a healthier future

* Tel.: +31-20-525-6899; fax: +31-20-525-6579. E-mail address: [email protected] (S.S. Blume)

for all of us, on its scienti®c and technological success. The wish to believe in the claims of medicine and in the histories of its triumphs, is deeply embedded in western industrial culture. It is only recently that these claims have become subject to critical scrutiny of a kind to which other technologies (military, industrial) have been subjected for much longer. It is with claims and counter claims of this sort that this paper is concerned. It can thus be viewed as a contribution to the growing volume of historical±sociological research on the origins and deployment of new medical technologies (e.g. Blume, 1992; Fox and Swazey, 1992; Pickstone, 1992; Howell, 1995). The focus of the discussion is the relatively recent technology of cochlear implantation, involving insertion of a tiny electrode in the inner ear (or cochlea). With this device otologists (ear doctors) believe they can provide some totally deaf people with a form of hearing. On the other hand, deaf communities have profound reservations about this practice, and in particular about its

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use with deaf children. Use of the technology, particularly with deaf children, has become the source of con¯ict. Deploying their sharply di€erent interpretations of the history and the signi®cance of the technology, each side seeks to in¯uence the future course of events. However, not only do the two histories di€er profoundly in their authority and in their implications, but the possibilities of reaching some kind of (political) compromise with which both sides can live seems to vary from country to country.

Cochlear implants as medical triumph In the 1950s, despite decades of progress in understanding basic physiological and psychophysical aspects of hearing, the medical profession could do little for anyone su€ering total sensorineural deafness1. In February 1957 a totally deaf person about to be operated on begged Paris otologist Charles Eyries to ®nd a way of giving him some hearing, however minimal. In deciding to implant an electrode used in physiological research on hearing, Eyries was taking an heroic step. By stimulating the (functioning) auditory nerve directly, the electrode should do the job of the patient's non-functioning cochlea. On 25 February the operation took place. Despite the patient's ultimate disappointment and decision to have the device explanted and despite technical limitations, Eyries and his medical physicist colleague felt sure that the technique had a future (Djourno and Eyries, 1957; Albinhac, 1978). In 1961 a Los Angeles otologist, William House, made a second attempt. House's implant was di€erent from that used in Paris. Aiming at speech discrimination, House's implant stimulated the cochlea at ®ve di€erent positions along its length, each sensitive to a di€erent range of frequencies. Once more, however, technical limitations led House to explant his device and to call a temporary halt to this work. By the early 1970s, major advances in materials and electronics technologies had taken place. The implantable pacemaker had become a well-known symbol of the emerging `bionic' technology. Electrical engineers 1 Deafness is conventionally characterized as being either `conductive' (a failure of the mechanism of sound conduction usually associated with problems of the outer or middle ear) or `sensorineural' (a failure of the mechanisms by which sound waves are converted into neural impulses, and subsequently processed by the brain). Sensorineural deafness can result from failure of the inner ear or cochlea, of the acoustic nerve or of higher order processing by the brain. This account of the development of the cochlear implant is based on Blume (1995).

and materials scientists were more willing to collaborate with clinicians than they had been previously. The climate was changing, and House felt he could try again (House, 1985). Soon after doing so he changed his strategy, and decided to concentrate on a single-channel electrode. This meant trading the likely bene®ts of frequency discrimination provided by the earlier multichannel device for the greater ease of construction of the single channel device. The simpler device should make it possible rapidly to provide deaf people with a useful prosthesis. By the mid '70s a number of other groups had also started to develop cochlear implants. Technically and surgically their approaches di€ered from that of House and also from one another's. At Stanford University, for example, F. Blair Simmons was convinced that implantation of the single channel device was premature: that for speech to be made accessible to a patient an implant would have to be multichannel. A workshop which took place in San Francisco in 1974 showed disagreement about the experimental or `experimental/ therapeutic' status of the technique (with most inclining to the former view); about the value of single channel implants; and about the additional bene®t to be expected from a future multichannel device. Participants agreed however that the future was rosy: that of the 300,000 profoundly deaf individuals in the USA as many as two thirds might derive some potential bene®t from an implant device (Merzenich and Sooy, 1974). Not everyone was convinced and among basic researchers there was downright opposition. Many scientists working in the physiology and neurology of hearing (perhaps most notably Nelson Kiang of the MIT) took the view that present knowledge provided insucient grounds for o€ering any kind of `therapy'. Whatever clinicians' aspirations, far too little was known of how speech signals are coded at the level of the auditory nerve for proper design of an implant. Responses to critical opinions like those set out with authority by Kiang di€ered. Whilst some groups changed the thrust of their work, House was unwavering. Convinced that he was doing the best he could for his patients he carried on as resolutely as before. There are clear parallels with Fox and Swazey's ``sociological portrait of the transplant surgeon'' (Fox and Swazey, 1974, pp. 109±121). Having read Kiang and Moxon's (1972) critique another American researcher of that time (Dobelle, 1973) retorted: I think a recent remark made in my presence by ``Pim'' Kol€, inventor of the arti®cial kidney, is very important and bears repeating. When asked about the fact that, after 30 years, the arti®cial kidney was still not fully understood, he replied, ``If I

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really worried how it worked, I would still be studying membrane transport in cellophane, instead of building the ®rst arti®cial kidney''. I feel the same way about the auditory prosthesis. If it works, I will take it. Auditory physiologists like you, Dr. Kiang, can then try to explain why. And the fact is that House's work was beginning to attract attention from clinicians abroad. Among those who listened with fascination to a lecture he gave at the 1973 international otolaryngological conference which took place in Venice was French otologist Claude-Henri Chouard, head of Service at the StAntoine Hospital in Paris. Often thinking back to what his teacher Eyries had told him years before, Chouard writes of having ``dreamt constantly of an electrical system, a James Bond-style gadget, which would be able to alleviate the formidable handicap of total deafness'' (Chouard, 1978, p. 35). He had read of Simmons' work and of that of House. He had visited Los Angeles to see House operate. In May Chouard attended the Venice conference together with Patrick MacLeod, director of the laboratory for sensory neurophysiology at the Ecole Practique des Hautes Etudes (EPHE) in Paris. Chouard rapidly concluded, as had Simmons, that his objective had to be that of permitting implantees to distinguish speech. This necessitated a multichannel device: the more channels the better. The design which he and MacLeod chose would sample di€erent frequency bands in a speech signal, each band then stimulating a single segment of the cochlea. By 1974 Chouard needed an industrial partner willing and able to produce an implant along the lines he had conceived. After failing to generate interest among the large electronics ®rms approached (including Thomson and Philips), Chouard found a partner. Bertin, a smallish French electronics ®rm, would take on the task, aided by a government subsidy. In late 1976 the ®rst prototypes of the (now improved) Bertin device were implanted. Consonant with his belief in the proven value of the technique, through the mid 1970s Chouard implanted as many patients as his resources permitted: roughly one per month. These programmes of work, of House, Simmons and Chouard illustrate the work going on in the late 1970s. Others were at work too: in Austria, in Britain, in Germany. Looking back from the perspective of 1999, when a device based on his design has captured most of the world market, one might conclude that the most signi®cant work had been that of an Australian otologist, Graeme Clark. In¯uenced in particular by the work of Simmons (Epstein, 1989), and like Simmons and Chouard, Clark was convinced that for speech to be made perceptible a multichannel device was needed.

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The development of such a device, he believed, would depend upon considerable basic research, starting with animals. After a decade of work, in 1978 Clark felt able to try out his prototype on a volunteer. A 48 year old man who had been deafened in an accident two years before, reading about Clark's work in a magazine, approached him and eventually became his ®rst implantee. Among House's listeners in Venice had been other (European) otologists who would have liked to have started similar work but felt unable to do so. The fact is that many leading clinicians were opposed to the development and clinical testing of the devices. Chouard had not allowed himself to be deterred by opposition: others were. In the Netherlands, for example, the Amsterdam professor L B W Jongkees (Jongkees, 1978), a leading ®gure in Dutch otology, wrote a highly sceptical piece in the country's principal medical journal: Dr. Chouard from Paris has just favoured the world with an indication of the remarkable success of French medical science by sending out an announcement that he and his colleagues, by computer-assisted signal ampli®cation directly to the auditory nerve, are now in a position to let the deaf hear. The modest scholar adds: so far as hearing speech is concerned, matters are now resolved, though not yet for music. Poor deaf, poor family practitioners, poor ear doctors. It is a soap bubble . . . Without careful experiments, for which animals are far more appropriate than people, it is highly unlikely that through playing with electrodes, sticking them in the auditory nerve without much understanding, there is much more chance of providing a deaf person with useful hearing than there is of a rhesus monkey, provided with a typewriter, of producing the book of Genesis, even in Swahili. By the beginning of the 1980s, though numbers implanted worldwide were small, cochlear implants were acquiring some degree of professional respectability. Jongkees, among others, bears witness to this change of heart. In a 1982 article in the same journal he admitted that, whatever the lack of fundamental understanding, it did appear that the device o€ered something to some at least among the deaf (Jongkees, 1982). By this time, other industrial corporations were also becoming interested. In 1981, 3M, after a number of abortive involvements with other groups, entered into a licensing agreement with William House. In that same year the Australian government agreed to sup-

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port a collaborative programme of work involving Clark at the University of Melbourne and the Australian Nucleus group of companies. In most countries these two devices, the single channel House/ 3M device and the multichannel Nucleus device, were to dominate the following years. In France the situation was di€erent. Development of the ChouardBertin device had been subsidised through a programme of state support for industrial innovation, just as was the case for Clark and Nucleus in Australia. In order to give this French technology a chance to prove itself import of competing devices into France was for a time discouraged. In France, in other words, despite limited funding from the social security fund, the policy context in which cochlear implantation emerged was principally that of industrial rather than health policy. In October 1983, 3M sought premarket approval from the Food and Drug Administration (FDA) for its device, submitting data on the more than 350 patients implanted. FDA decided that the device was safe and that it provided access to environmental sounds. For some patients it ``may aid'' with lipreading. In October 1984 the 3M/House device became the ®rst cochlear implant to be approved for use in deaf adults (age 18 or over). FDA approval of the Nucleus device, based on Clark's design, followed 12 months later. Numbers implanted, which had grown from less than 100 worldwide in 1978 to nearly 500 by 1984, were set to grow more rapidly as devices could be marketed and used, backed by the authority of FDA approval. In the Netherlands, where two implantation programmes had recently been established, FDA approval proved important. In one of the two centres this led to the choice of the 3M/House device for the ®rst implantations (Huizing, 1992): We found that very important. Because, well, we had to import the device. We said to ourselves `what if problems arise, infection, leakage' . . . it would be extremely convenient to be able to refer to the great American experience and the FDA approval. We had the feeling that we'd then be covered if anything went wrong. The other centre initially opted for a di€erent device: the so-called `3M Vienna' device. Designed by a group in Vienna, this too was initially manufactured by 3M, (and thereafter by MedEl, an Austrian ®rm). Both devices were `single channel', but they di€ered in that whilst the 3M/House device was `intracochlear' (implanted right into the cochlea), the 3M/Vienna device was `extracochlear' (placed on the cochlea). Some surgeons believed that

an extracochlear device was not only almost as e€ective, but that it was a less risky intervention. In contrast to France, the ®rst years of cochlear implantation were marked by the absence of any policy context. Dutch industry was not involved, and in the absence of any direct government funding the ®rst implantations were ®nanced from the hospitals' own budgets. Internationally, the market in fact grew far more slowly than had been anticipated. Deaf people were not coming forwards in anything like the numbers anticipated by professionals and manufacturers. Concerned by the slow growth of the market, 3M launched a campaign to persuade physicians to promote the technology among patients (Garud and van der Ven, 1989, p. 504), but still results were disappointing. From 1986, 3M slowly began to reduce its commitment to the ®eld (Garud and van der Ven, 1989, p. 505): halting active marketing of the existing device as well as research on an advanced model. Part of the explanation was ®nancial. By the 1980s, the emphasis in health policy, especially in the USA, had come very ®rmly to be placed on cost containment, and on controlling the in¯ationary implications of new devices and procedures. In the USA, by far the most important market, hospitals faced ®nancial disincentives to performing cochlear implantations. In 1987 only 69 cochlear implantations were reimbursed by Medicare (Kane and Manoukian, 1989). If there were other reasons for the failure of the market to grow, there was little sense of what these might be. Clinicians were typically optimistic, as were those companies remaining in the market. Meanwhile a further development was taking place and one which would have major implications for the future of the device, both commercially and socially. The group for whom the implant was considered appropriate was being extended: from deafened adults (who could, hopefully, be reintegrated in the world of sound) to children (who may have heard for a very short time before becoming deaf, or who may never had heard at all). In purely quantitative terms, this meant a considerable increase in the possible implant population. A few years before it had been generally felt that the technology was not at a stage at which it could be o€ered to deaf children. Chouard in France was the ®rst to be convinced that ``the most successful results will be obtained on the youngest patients'' and in August 1977 he implanted his ®rst children, aged 10 and 14. Plans were already being laid to implant children as young as 6±8 years. Fellow professionals greeted this step with surprise or concern, regarding it as premature, though little was said in public. In the USA House started implanting children in 1980. Despite

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profound disagreement regarding the appropriateness of this step and, once more, objections from neurophysiologists2, by the early 1980s the idea of implanting deaf children was securely on the professional agenda. In the Netherlands implant teams were much more cautious. It was the late 1980s before both groups in the Netherlands were convinced, principally by positive reports emerging abroad, that implantation should also be o€ered to deaf children. In 1989 the ®rst steps were taken. After implanting a child of 11 with the single channel device, in 1990 three children (one aged 14 and two 5 year olds) were ®tted with the more complex Nucleus device. In this same year the FDA granted approval to Nucleus to market its implant for use with children (aged 2±17 years). Looking back, clinicians involved with cochlear implantation see a process of continuing improvement, of growing certainty, of unquestionable progress. Resistance there had certainly been, but whilst not uncommon this is at root unfounded (Chouard, 1992): the physician is conservative to the extent to which his task is to conserve life. Any new therapy seems a potentially dangerous aggression. Think of the inventors of X-ray . . . Resistance is normal. And these resistances have embarrassed me in the beginning, but I always respected them and I continue to understand hesitancies on the part of those who work with deaf children and who continue to believe that the cochlear implant is not a good thing for a deaf child. But these resistances, you know, to the extent to which they are normal to that extent it's necessary to realize that they pass through three stages. The ®rst consists in saying ``What he's saying is false, it's not true, he's lying''. the second stage consists in saying ``OK, what he's saying is true, but it is of no interest''. And the third stage, in which we are now, and which I'm enjoying with much pleasure, is to say ``Well, it's true, it really works, and moreover I always said as much''. 2

The principal justi®cation given for implanting young children was in terms of a `critical period' in language development. Yet, just as happened earlier, neurophysiologists proved critical of clinicians' reasoning, as we can see from Dr. Gerald Loeb's comments at a 1983 Conference ``I just wanted to add a cautionary remark about this notion of the critical period, which we suddenly have decided is a real thing. First, the fact is that this is a very hypothetical notion. . . Second, the sort of pattern stimulation that we provide with electroneural prostheses may not ful®l its necessary inputs. Third, we have no idea at what age that period exists, or is critical, or ceases to exist'' (Loeb, 1983, p. 581).

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More commonly, and certainly where unchallenged by an interviewer, it is usual to indicate progress by pointing to various ®gures: the rapid growth of implantation, including of children, in most European countries; to audiological data which seem to show tremendous gains in reception and production of speech as a result of implantation; to numbers of children having been integrated (or `mainstreamed') in normal education after implantation. According to an authoritative report from the British Medical Research Council, ``Results from the UK and overseas'' have shown clearly that cochlear implantation (CI) (Summer®eld and Marshall, 1995, p. 186): is an ecacious treatment for profound deafness in many children who lose their hearing after the acquisition of spoken language to re-acquire useful auditory and linguistic skills, particularly if they are implanted soon after losing their hearing. It allows children who were either born deaf, or who lost their hearing before acquiring spoken language, to develop auditory and speech-perceptual skills, particularly if they are implanted when young. In accordance with this view, and despite the high cost of the procedure and the extended revalidation period required, the numbers of children implanted in Europe have risen dramatically over the past few years: from two or three between 1983 and 1986 to more than 600 in the period 1993±1994 (EUD, 1996). Approximately 90% of these children have been ®tted with the Nucleus device. As of July 1995, 1549 children in Europe had received this device. In the USA, as of July 1994, 513 children aged 2±5 years or 21% of the total population of deaf children in this age range, had received an implant (Van den Broek et al., 1996, p 111). Gradually, it seems, the criteria on which children are to be admitted to implant programmes are being relaxed. In line with the longstanding view `the younger the better', minimum ages are falling from 4 years to 2 years and now (in one German centre) to less than one year. Audiometric criteria are also being relaxed, so that some of the children now being given an implant have sucient residual hearing to have been excluded only two or three years ago. The medical understanding of cochlear implants is both a history of past success and a vision of future success. In my interview with him one of the Dutch implant surgeons said ``It will come. No one can stop it''. Eventually all deaf children will have cochlear implants ``though I don't know if I'll be around to see it'' (Huizing, 1992). Few clinicians seem to doubt that each step taken has been a step forwards. An exception is William House, who has recently argued that consensus favour-

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ing the multiple electrode system (in particular that of Nucleus) over his own single electrode system was unjusti®ed. House also deals with criticism of his ®rst work with children in the early 1980s, and in particular the claim that it was unwarranted and unethical. House retorts that such an overall assessment of what is warranted and what not can only be made once the signi®cance of deafness itself is also taken into account (House, 1995, p. 10): Deaf children face a number of wrenching diculties and extraordinary challenges. The human community is characterized by speech, and that speech is summarized by a mother saying ``I love you'' to her child and the child hearing and responding in kind. If we allow opportunities to o€er this birthright to pass away, unremarked, if we fail to act to correct a problem when we have the means at hand, we have violated our oaths as healers. Implanting children had nothing to do with glory; it had to do with responsibility. Deaf people do not see it quite like that.

Cochlear implants and deaf history Clinicians tend to attribute the success of their interventions to the inherent e€ectiveness of those interventions. Where objections are encountered these are explained away by reference to ignorance, jealousy, or conservatism. Sociologists, more sceptically, are not inclined to see `e€ectiveness' as quite so self-evident. How do colleagues, potential patients, the general public, health policy-makers come to accept that a new technology works, that it is better than previous interventions and that any risks it entails are worth taking? Viewed from a sociological perspective, what tends to be missing from professionals' accounts of the history of cochlear implantation is any re¯ection on these strategies of persuasion. In terms of the argument here what is most strikingly ignored is any reference to the role of the mass media, which historical±sociological studies of other new medical technologies have shown may be of great importance in stimulating political and popular interest and enthusiasm (e.g. Fox and Swazey, 1992). Outside France early work on cochlear implants was invisible as far as the deaf were concerned. Where work was conducted within a strictly research framework and reported only in professional media, it received little or no attention from the mass media and was not noticed by the deaf. Recruitment of the handful of volunteer subjects needed for research purposes typically took place via existing contacts. With the desire to provide a more extensive service came the

need to convince both deaf people and health insurance bodies of the value of the new technology. Here the mass media were to play an important role. Clinicians are typically uncomfortable in admitting the importance of publicity and their e€orts at obtaining it. Chouard, who moved fast and early, is here an exception. In his memoir, published in 1978 (Chouard, 1978), he makes very clear the importance that he had attached to (favourable) publicity (Blume, 1997). In France the reaction of the press was highly enthusiastic. Chouard's early work was presented as a `remarkable breakthrough' a `triumph of French medicine' and as foreshadowing the `vanquishing of deafness'. It was through these reports that the deaf began to learn of the `miracle' of cochlear implantation. In April 1977 the UNISDA (National Union for the Social Integration of the Hearing Impaired), an umbrella organization representing deaf, hard of hearing, parents and education and social work organisations, issued a statement expressing concern. This statement, which appeared in the periodicals of a number of these organisations, stressed the need for caution and drew attention to the dangers of exaggerated publicity. Only a small number among the deaf are likely to pro®t, at least for the moment; little is known of the physiological e€ects of implants; the risks and uncertainties in implanting children are great, all in all, the signatories insist: whilst recognising the good intentions and the seriousness of the research, [we] nevertheless invite all those involved to show extreme prudence. The con®dence of deaf people and of their families risks being destroyed if the results of the operation fail to correspond with the accounts which are being given. The con®dence of deaf people and of their families risks being destroyed by hasty communications not based on controllable results. Whatever the personal hopes of many individual parents may have been, the subsequent beginnings of child implantation were greeted with still greater concern by the organisations of parents of deaf children. In France the parents' organisation (ANPEDA) enjoyed close links with the otological and audiological professions and generally speaking shared doctors' faith in the possibilities of cochlear implantation. Even the ANPEDA, however, was outraged at what was seen as premature application to children. The concern of ANPEDA focussed principally on inadequacy of available knowledge: a point of view shared by many basic scientists and clinicians though rarely articulated publicly by them. Whilst these organisations possessed the social resources necessary to gain publicity for their views, the same was not true of deaf adults. Their concerns found little public ex-

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pression. It was becoming apparent that the vast majority of adult deaf did not see themselves as possible candidates for cochlear implantation, in contrast to earlier medical assumptions. However, whilst they were apparently unhappy at the publicity given the new technology, little more of their views was known to outsiders. The sentiments latent in the deaf community did in fact go beyond apathy and some concern for exaggerated publicity. In December 1977 a group of French deaf people prepared a text which was subsequently publicised by a hearing writer and philosopher, Jean GreÂmion. It presents a di€erent kind of concern regarding the cochlear implant (quoted by Albinhac, 1978, p. 86): We deaf, what do we see in all the newspapers and on the television: `Extraordinary invention of doctor Chouard: 17,000 deaf mutes can hear and speak'. We smile. Why not bleach the blacks and blacken the whites? When are they going to stop, once and for all, using us as guinea pigs? We are astonished that everyone is talking about this invention, whilst normally there's never a word about our life and our world. For years there hasn't been a single line about us in the press [ . . . ] when are they ®nally going to accept our world as a reality? [. . .] Many among us are married, have children and these children are happy [ . . . ] It is society which has oppressed us and continues to oppress us. The proof: this invention of Dr Chouard. We speak only with a gestual language, that is our maternal language and it is marvellous to speak that language. . . The need to proceed cautiously in introducing a new medical technology, the point made by UNISDA, seems self-evident. By contrast, the point made by GreÂmion's text was far from self-evident and a most unfamiliar one in the 1970s. It evokes a perspective on deafness very di€erent from its common-sense identi®cation with hearing loss. The idea that being deaf could be equated with being black was to become central to deaf protests a decade later, as we shall see, but a great deal of work would need to be done for that to occur. Gradually, sociologists were beginning to discover that more lay behind deaf people's lack of enthusiasm for `being made hearing' than fear of entering the world of sound alone. In a pioneering study the American sociologist Paul Higgins, himself the son of deaf parents, showed how deaf people's lives were by no means dominated by feelings of exclusion and isolation (Higgins, 1980). Higgins con®rmed and elaborated, on the basis of extensive ethnographic research, what GreÂmion's text had declared. Deaf people have

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created a distinctive way of life, a community, with its own structures, institutions, norms and values. In the last few years the deaf have moved beyond individual lack of interest in being implanted, and beyond complaining simply at the publicity given implantation. Deaf people have come increasingly to protest against the way in which cochlear implantation is being used and indeed against the technology itself. Gradually, their concerns are attracting attention. How has this been achieved by a group which, not so long ago, was both marginal and stigmatised? Fundamental here is the accumulation of social and cultural resources with the aid of which an alternative rendering of the development of cochlear implantation could be constructed and made plausible. Central to this accumulation of resources was the work of a few linguists, who, in the face of widespread scepticism, in the 1960s began to study the sign languages used by deaf people. As it gradually became clear that sign languages had the properties of natural languages and were not simply mime or gesture, it became possible to conceive of the deaf in other terms. No longer a collection of deprived individuals handicapped by lack of (re¯exive) communication, the deaf could begin to lay claim to being considered members of a unique community of sign language users. Some authors began to use the term `Deaf' (with a capital D) to distinguish cultural deafness from audiological deafness or hearing loss. Sign linguistics research both led to and legitimated sociological interest in the functioning of the Deaf community, as well as historical research on the (social) life of deaf people. In the light of these changes we can better understand what lies behind GreÂmion's text protesting at the publicity given Professor Chouard's work. At more or less that time a remarkable action research project had recently been established at the Centre for the Study of Social Movements in Paris. Bernard Mottez, a sociologist and Harry Markowicz, a sociolinguist, had started both to chart and to contribute to the process of emancipation then taking place among the French deaf (Mottez and Markowicz, 1979; see also GreÂmion, 1990). Through a series of seminars they introduced the work of the major American sign linguists. Through the newsletter ``Coup d'Oeil'' they provided regular information on sign language related activities taking place in France and abroad. The ®rst ``half clandestine'' course in French sign language had started in late 1976. It was in the light of this new perspective that the cochlear implant came gradually to be perceived by deaf intellectuals and their hearing allies. A di€erent rendering of the history of cochlear implantation was in course of construction. Whilst this `re®guring' was taking place in France (as well as in the USA and elsewhere), there was little sign of it in the Netherlands. In a way this is surpris-

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ing. Sign language research had started early in the Netherlands: in the 1960s. However, in distinction to other countries this research was connected neither to any emancipatory movement nor to the organisation of deaf people in the Netherlands (itself in fact still new and weakly organised). When beginning to implant children Dutch clinicians had expected opposition, based on their knowledge of events abroad, but this did not materialize until about 1993. In France, however, although the main representative body of deaf people in France was relatively cautious in its opposition, a new and radical voice was emerging. ``Sourdes en ColeÁre'', founded in 1993, and partly inspired by earlier Gay Liberation action, made opposition to cochlear implantation a principal objective (Sourdes en ColeÁre'' n.d.): The cochlear implant is experienced, within the deaf community, as yet another attempt at socio-cultural genocide, of the same order as the banning of sign language at the Congress of Milan in 1880, bringing in its wake disastrous consequences for Deaf culture. But this time, the Deaf are not lowering their arms. Thus, ``Sourdes en ColeÁre'' are organising their ®rst national demonstration, on 16 October, at Lyon, against the cochlear implant. In February 1994 Jean Dagron, a physician-audiologist who also has a degree in social psychology, published a pamphlet on the subject of cochlear implants in which he criticised not only the lack of adequate knowledge of the implications of implants for deaf children, but also a system in which information provided to their parents totally disregarded the possibilities and the cognitive bene®ts of bringing up a child as a member of the signing deaf community. Dagron insisted on the need for thoroughgoing evaluation and for an adequate de®nition of ethical practice in so emotionally loaded a domain (Dagron, 1994). The passion of ``Sourdes en ColeÁre'', of which a prize-winning and nationally famous Deaf actress 3

The Fund for Investigative Medicine (Fonds Ontwikkelingsgeneeskunde) was established in 1988. Its purpose is to support studies aiming at evaluating new or established medical technologies or procedures with a view to advising on their suitability for reimbursement from the health insurance fund. Studies, which generally last for three years, typically have the form of a clinical trial, sometimes with additional cost/e€ectiveness studies and, in principle at least, studies of ethical and social implications. 4 This was also the time at which, in the course of my own research, I began to make contact with the deaf community, assisted by a young deaf man, Johan Ros. In a future paper I attempt to re¯ect on possible relations between these two sets of events

(Emmanuelle Laborit) is a leading member, was winning attention for the deaf point of view. In May 1994 a group of 20 (including representatives of ``Sourdes en ColeÁre'', Dagron, the sociologist Mottez, linguists, educators, psychologists and parents of deaf children) presented a document to the French national committee on medical ethics. In it, they argued that given the uncertainties regarding the linguistic, psychological and social implications of implanting deaf children, the technique should be regarded as experimental. Under French law, this would subject its use to rigorous control and oversight. A press conference was held to announce the document, and this resulted in a long article in Le Monde in which, almost for the ®rst time in France, the concerns of the deaf received serious and sympathetic coverage from a leading newspaper (FolleÂa, 1994). In the Netherlands, in striking contrast, little or no formal discussion of cochlear implantation took place in the deaf community prior to 1993. That was the year in which a pilot programme of paediatric implants, ®nanced by a special government fund for health technology assessment (the Fund for Investigative Medicine)3, began. Coincidentally or not, it was also a year which saw a small ¯urry of media attention for cochlear implantation. Trefpunt, a publication of the Dutch Ministry of Health, carried an article under the headline ``Electrical inner ear beats sign language'' (de Koning, 1993). In the course of that year4, this began to change. One indication of emerging concern was a piece published in the Newsletter of the Amsterdam Deaf Club (Kamerling, 1993). A discussion evening which had taken place in Amsterdam in October had been signi®cant for the deaf community. What it had shown, concludes the author, was clear unanimity regarding implantation both of adults and of children. Deaf adults are able to decide for themselves whether the device is something for them or not. So far as children are concerned, ``People found it a very bad thing if deaf born or early deafened children are deprived of their right to be deaf and if being deaf is viewed so negatively by the hearing world''. Choosing for a cochlear implant (Kamerling, 1993): means also abandoning your identity as a deaf person, and acquiring a new identity. Just as when a man, after hormone treatment and an operation, lets himself be turned into a woman. The di€erence is that in this (CI) case the majority stands cheering. The di€erence is also that as an ex-deaf person you don't become a hearing person. He stresses how most deaf people have long given up the outside world's dream of making them hearing: they see and express (Kamerling, 1993):

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how beautiful and how rich sign language is and how important the deaf community is as a weapon in the struggle for an equal place in society. CI sounds like a brutal `no' against this ideal of a deaf community: a brutal `no' also to all that deaf people have hitherto achieved. There is a real risk that growing interest in sign language, and recognition of the rights of the deaf community, will come to seem irrelevant (certainly when it comes to the allocation of resources). For the ®rst time too, the deaf perspective on CI was noted in the daily press. In November a daily newspaper carried an article referring to deaf people ®nding it strange that a child should have to undergo a serious operation to correct something which hearing people, but not they, see as a handicap (Messer and van Corven, 1993). According to this view deaf people, after years of having been outsiders have created their own world with their own culture. The authors of the article go on to point out that (American) clinicians don't seem to understand this point of view. Clinicians are said to draw an analogy which deaf people would not draw ``There aren't any blind people who'd protest if a new treatment was discovered that could improve sight''. Many deaf people have so built their lives around participation in a community of sign language users that they feel neither desire of nor need for hearing. From the deaf point of view cochlear implantation was coming to be seen in other terms than as an aid to the (re)acquisition of hearing. It was becoming embedded in a distinctive historical and sociological understanding of deafness. A new history was being written and is being written: one of oppression of deaf culture and deaf language. It is a tale of a ¯ourishing deaf culture, its heroes and its vicissitudes, and of the suppression of that culture which began with 1880 and the infamous Milan congress on deaf education (Lane, 1984). Writing deaf history, like black history or working class history, commonly has an emancipatory objective. Life histories, where they have been collected, show the isolation su€ered by deaf children unable to communicate with their families and frequently forbidden to use the only language in which they could freely communicate. They show the desperation and the despair of many older deaf people, `outsiders in a hearing world', who, in many cases, achieved a degree of emotional stability only when they found and embraced the Deaf community (Padden and Humphries, 1988; Taylor and Bishop, 1991). The construction of an alternative rendering of cochlear implantation, in terms of deaf people's own history, has been pursued by a number of scholars, among whom the American psycholinguist and histor-

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ian of the deaf Harlan Lane has been particularly prominent (Lane, 1992). According to this interpretation, the primary historical antecendents of cochlear implantation are not to be sought among the physicists and physiologists who studied mechanisms of hearing. They are to be found in the attempts of otologists like Jean-Marc Itard to cure deafness with electric currents and potions poured into the ear or Alexander Graham Bell's eugenicist proposals to forbid marriages between deaf people. Emmanuelle Laborit has recently published an autobiography, setting out in moving detail what her family's discovery of sign language when she was 7 years old meant for her and for them. It was only then, she tells us, that she became aware of herself as an individual and could start referring to herself as `I' rather than `she'. A chapter of her book is devoted to cochlear implantation (Laborit, 1996, pp. 183±184): For twenty years or so, thus more or less from the time I was born, some, though not all, doctors have said ``A time is coming in which the deaf can listen to Beethoven''. First they talked in terms of the next day, then `in the near future'. Then they needed support from industry. Then they turned back to diagnostics and the idea that people who'd been deaf for more than ten years should be left in peace was born. Then they decided to give children an implant in the ®rst years of their lives, before the auditory parts of their brains had time to atrophy. As though they had to move fast in order to prevent themselves being shown to be wrong.

Histories in con¯ict There are thus two very di€erent accounts of cochlear implantation, embedded in two very di€erent histories. One is a tale of medicine's triumph, akin to many other such tales: a tale of courageous pioneers, of the wonders of medical science and technology. The other is in a genre which has emerged only in the past two decades and which highlights the subordination of medicine to surveillance, social control and normalisation. This a tale of the oppression of the deaf: of hearing society's inability to accept deaf people for what they are. We cannot say that one is true and the other is false. Both are true. Both accounts are grounded in the lived experiences of those who articulate them. Both are mobilised in the attempt to in¯uence the way in which the technology of cochlear implantation is to be used. Clinicians, audiologists, speech therapists, are largely convinced that the cochlear implant is a boon. As many young deaf children as prove suitable (with

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suitability de®ned in fairly ¯exible terms) should be allowed to pro®t from it. Deaf communities argue that too much is as yet unknown and that deaf children must always have the right to grow up as signing members of the Deaf community. Each grounds its claims in its own particular history. Where is battle joined? Who and what is to be in¯uenced? There are two kinds of decision at stake, though they are not wholly independent of one another. The ®rst is the decision that the parents of a deaf child must, or might, confront: ``Should we seek a cochlear implant for our deaf child?'' Many parents ®nd this an agonising decision, as well they should. Caught, as it were, between these two powerful renderings and lacking so clear and collective a voice, parents seek information and help; they turn for advice to professionals, to other parents. They are o€ered unsolicited advice by many more, and they cannot ignore the feelings of family members. Some, but far from all, also turn to the deaf community and/or to sign language, perhaps before having even considered an implant. The likelihood of their doing so depends on many things, including the visibility of that community and the availability of courses in sign language. The e€ect of any such experience is similarly variable5. The second kind of decision is in the public sphere: decisions, for example, regarding the reimbursement of the very expensive cochlear implant procedure. It is an unequal battle, since the two accounts di€er greatly in their authority. The medical understanding draws on and re¯ects the authority of science and the promise of medicine: both of which have become fundamental components of modern industrial culture. The deaf perspective draws on and re¯ects the experience of a traditionally marginalised and stigmatised group. The medical perspective is sustained by the substantial economic interests now associated with the technology and by the international collegial relations of the professionals involved who, in addition, share status and background ties with senior politicians and their advisors. The deaf perspective is sustained by no signi®cant economic interests and in most countries deaf leaders lack both institutionalised access to senior decision makers and the advantages of shared status and schooling. Con¯ict between these two historical±sociological renderings has a relatively long and dramatic history in France and a short and somewhat uneventful history in the Netherlands. Con¯ict is not in the interest of parents of deaf children and serves only to exacer5 Together with Lucy Yardley, a psychologist, I have explored this kind of decision process and the in¯uence of contacts with sign language and the deaf, in a further paper (Blume and Yardley, n.d.).

bate the painful dilemma with which they are faced in seeking to do the best they can for their child. Signi®cantly, in both countries attempts at formulating modest claims recognising the partial validity of each perspective have recently been made. Such attempts may derive from a weighing up of the evidence, as in the French example cited below, or from dialogue, as in the Dutch example. In both countries the prospects for such a middle ground have brie¯y seemed bright. Yet in the last resort clinicians remain reluctant to compromise on what they see as their responsibility to their patients. Two such episodes are worth recounting brie¯y. The French Ethics Committee issued its report on cochlear implantation of children in December 1994 (CCNE, 1994). The claim that this procedure should be treated as experimental was rejected as unrealistic, given the scale on which implantation was practised. Nevertheless the report was welcomed by the Deaf community in France, because the Committee went on to point to the major doubts regarding the overall bene®ts which still remained and which were unlikely to be resolved in the near future. To avoid the risk of compromising childrens' psychological and social development, all deaf children should be provided with access to sign language from an early age, whether they might subsequently be considered for implantation or not. Despite the acknowledged standing and neutrality of this advisory committee, the implant teams in France were unimpressed by its reading of the situation. It seems unlikely that much has, in fact, changed in the intervening three years. What of the Netherlands, where relations between implant teams and the deaf community have been far less confrontational? In October 1995 a two day workshop took place at which representatives of the deaf community, members of the implant teams, and representatives of the parents' organisation (FODOK) debated the issue of cochlear implantation in a constructive manner. Two resolutions were unanimously accepted. The ®rst concerned the establishment of a `Platform' in which service providers (notably implant and rehabilitation teams) and interested groups (deaf and parents) would regularly exchange information and points of view. According to the second resolution, the Health Insurance Council (Ziekenfondsraad ) would be advised, through a joint letter, to postpone a decision, which it was expected imminently to make, regarding the reimbursement of paediatric implantation via normal health insurance. It would be better, those present agreed, to continue to regard the procedure as experimental, or in need of further assessment, whilst more data on the long-term (sociopsychological and linguistic) e€ects of implantation were being obtained. Both resolutions were subsequently implemented. And although senior clinicians

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were certainly unenthousiastic regarding the second they have willingly participated in the activities of the Platform. In the Netherlands, unlike in France, dialogue has become institutionalised. In December 1996 the Ziekenfondsraad nevertheless advised the Minister to reimburse child implantation from normal health insurance funds. Alerted to the disagreements both by the Platform and by individual members, the Minister subsequently decided to consult the various interest groups represented. In November 1997, the Minister decided that the bene®ts of cochlear implantation for deaf children had not, as yet, been proven. Further assessment was necessary and the technique should continue to be treated as `experimental', at least in the case of children. Con¯ict between the medical profession and the deaf community is grounded in, and justi®ed by appeal to, these very di€erent renderings of the history of cochlear implantation. This is true of France, of the Netherlands and of many other countries. The emergence of a compromise policy in the Netherlands, but not in France, has certainly been facilitated by economic considerations. Cochlear implantation is an expensive intervention. It has also been aided by a political culture, in the Netherlands, in which dialogue and co-existence are highly prized. Beyond that, I would argue, the growing acceptance of the claims of the deaf to be regarded as a cultural minority and sign language as a natural language of communication, has resulted in a willingness in the Netherlands to grant credibility to the deaf community's alternative rendering of the history of cochlear implantation. The two histories are unequal in their status and their authority, but their relative signi®cance for policy is a contingent matter: dependent on political culture and on the speci®cs of deaf emancipation.

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