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 for all of us, on its scienti®c and technological success.

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: blume@chem.uva.nl (S.S. Blume)
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 con-
tribution to the growing volume of historical±socio-
logical 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 technol-
ogy 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 reser-
vations about this practice, and in particular about its

0277-9536/99/$ - see front matter # 1999 Elsevier Science Ltd. All rights reserved.
PII: S 0 2 7 7 - 9 5 3 6 ( 9 9 ) 0 0 1 6 4 - 1
1258 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
use with deaf children. Use of the technology, particu-
larly 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 pro-
foundly 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 under-
standing basic physiological and psychophysical
aspects of hearing, the medical profession could do lit-
tle 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 mini-
mal. In deciding to implant an electrode used in phys-
iological 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 tech-
nique 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 discrimi-
nation, 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 implanta-
ble 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 sub-
sequently 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 collabor-
ate 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 dis-
crimination provided by the earlier multichannel device
for the greater ease of construction of the single chan-
nel 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 im-
plantation 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 dis-
agreement about the experimental or `experimental/
therapeutic' status of the technique (with most inclin-
ing to the former view); about the value of single chan-
nel 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 poten-
tial 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 chan-
ged 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 kid-
ney was still not fully understood, he replied, ``If I
 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
really worried how it worked, I would still be study-
ing 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 St-
Antoine 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 vis-
ited 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 pro-
duce an implant along the lines he had conceived.
After failing to generate interest among the large elec-
tronics ®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 otolo-
gist, 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.
1259
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 maga-
zine, 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 com-
puter-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 use-
ful hearing than there is of a rhesus monkey, pro-
vided 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 respectabil-
ity. 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-
1260 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
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 situ-
ation was di€erent. Development of the Chouard-
Bertin device had been subsidised through a pro-
gramme 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 pol-
icy 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 environ-
mental 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 pro-
grammes 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 implan-
tations (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 cov-
ered 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 manu-
factured 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 im-
plantation were marked by the absence of any pol-
icy 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 pro-
mote the technology among patients (Garud and van
der Ven, 1989, p. 504), but still results were disap-
pointing. 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 exist-
ing 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 contain-
ment, and on controlling the in¯ationary implications
of new devices and procedures. In the USA, by far the
most important market, hospitals faced ®nancial disin-
centives 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 con-
sidered appropriate was being extended: from deafe-
ned 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 prema-
ture, though little was said in public. In the USA
House started implanting children in 1980. Despite
 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
profound disagreement regarding the appropriateness
of this step and, once more, objections from neuro-
physiologists2, by the early 1980s the idea of implant-
ing 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 com-
plex 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 im-
plantation 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 begin-
ning, 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 chil-
dren was in terms of a `critical period' in language develop-
ment. 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).
1261
More commonly, and certainly where unchallenged
by an interviewer, it is usual to indicate progress by
pointing to various ®gures: the rapid growth of im-
plantation, including of children, in most European
countries; to audiological data which seem to show tre-
mendous 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 authori-
tative 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 ac-
quisition 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, par-
ticularly 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-
1262 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
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cul-
ties and extraordinary challenges. The human com-
munity 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 birth-
right 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 inter-
ventions to the inherent e€ectiveness of those interven-
tions. 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 pub-
lic, health policy-makers come to accept that a new
technology works, that it is better than previous inter-
ventions 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 frame-
work 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 hand-
ful 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 insur-
ance 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 enthu-
siastic. Chouard's early work was presented as a
`remarkable breakthrough' a `triumph of French medi-
cine' and as foreshadowing the `vanquishing of deaf-
ness'. 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 hear-
ing, parents and education and social work organis-
ations, issued a statement expressing concern. This
statement, which appeared in the periodicals of a num-
ber of these organisations, stressed the need for cau-
tion 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 ser-
iousness 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 communi-
cations 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 con-
cern 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 organ-
isations 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-
 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
pression. It was becoming apparent that the vast ma-
jority 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 exagger-
ated 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 inven-
tion, 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 ma-
ternal 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 cen-
tral 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 iso-
lation (Higgins, 1980). Higgins con®rmed and elabo-
rated, on the basis of extensive ethnographic research,
what GreÂmion's text had declared. Deaf people have
1263
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 in-
dividual lack of interest in being implanted, and
beyond complaining simply at the publicity given im-
plantation. Deaf people have come increasingly to pro-
test 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 handi-
capped 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 func-
tioning 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 under-
stand 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 sociol-
ogist 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 per-
spective 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-
1264 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
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 opposi-
tion, based on their knowledge of events abroad, but
this did not materialize until about 1993.
In France, however, although the main representa-
tive body of deaf people in France was relatively cau-
tious 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 objec-
tive (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 cul-
ture. 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-audiolo-
gist who also has a degree in social psychology, pub-
lished 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 pro-
vided to their parents totally disregarded the possibili-
ties 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 pur-
pose is to support studies aiming at evaluating new or estab-
lished 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 win-
ning 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 commit-
tee 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 con-
trol 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 publi-
cation 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 per-
son, 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):
 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
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 hear-
ing.
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 work-
ing class history, commonly has an emancipatory
objective. Life histories, where they have been col-
lected, show the isolation su€ered by deaf children
unable to communicate with their families and fre-
quently forbidden to use the only language in which
they could freely communicate. They show the des-
peration 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-
1265
ian of the deaf Harlan Lane has been particularly pro-
minent (Lane, 1992). According to this interpretation,
the primary historical antecendents of cochlear implan-
tation 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 auto-
biography, 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 atro-
phy. 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 normalisa-
tion. This a tale of the oppression of the deaf: of hear-
ing 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
1266 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
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 mem-
bers of the Deaf community. Each grounds its claims
in its own particular history.
Where is battle joined? Who and what is to be in¯u-
enced? 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 render-
ings and lacking so clear and collective a voice, parents
seek information and help; they turn for advice to pro-
fessionals, to other parents. They are o€ered unsoli-
cited 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: de-
cisions, 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 fun-
damental components of modern industrial culture.
The deaf perspective draws on and re¯ects the experi-
ence of a traditionally marginalised and stigmatised
group. The medical perspective is sustained by the sub-
stantial 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 his-
tory in the Netherlands. Con¯ict is not in the interest
of parents of deaf children and serves only to exacer-
5
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 ben-
e®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 implan-
tation 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 work-
shop took place at which representatives of the deaf
community, members of the implant teams, and repre-
sentatives of the parents' organisation (FODOK)
debated the issue of cochlear implantation in a con-
structive 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 resol-
ution, 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 implan-
tation via normal health insurance. It would be better,
those present agreed, to continue to regard the pro-
cedure as experimental, or in need of further assess-
ment, whilst more data on the long-term (socio-
psychological and linguistic) e€ects of implantation
were being obtained. Both resolutions were sub-
sequently implemented. And although senior clinicians
 S.S. Blume / Social Science & Medicine 49 (1999) 1257±1268
were certainly unenthousiastic regarding the second
they have willingly participated in the activities of the
Platform. In the Netherlands, unlike in France, dialo-
gue 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 emer-
gence of a compromise policy in the Netherlands, but
not in France, has certainly been facilitated by econ-
omic considerations. Cochlear implantation is an ex-
pensive 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 render-
ing 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 spe-
ci®cs of deaf emancipation.
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