letting the deaf be deaf reconsidering the use of cochlear implants in prelingually deaf children

14 H A S T I N G S C E N T E R R E P O R T July-August 1997

In the Country of the Blind the One-eyedMan is King.” Or so thought Nunez, the pro-tagonist of an H.G. Wells story who findshimself the sole person with sight in a com-

munity of people who have all been blind for fifteengenerations.1 Surrounded by persons he considersdisabled, Nunez sets out to convince the inhabi-tants of the country of the blind that they aremissing out on a great deal because of their blind-ness. Despite his best efforts, however, the blind arenot persuaded by his rhetoric, and Nunez, exasper-ated by their lack of understanding, shouts: “Youdon’t understand . . . You are blind, and I can see.”Broken, Nunez gives up his attempts to convincethe blind of his superiority and in an interestingrole reversal he himself becomes the subject of anattempt to be assimilated into the community ofthe blind. Convinced that all of Nunez’s talk aboutsuch obvious nonsense as “sight” and “blindness” isdue to the effect of Nunez’s prominent eyes on hisbrain function, the community doctor proclaims:“And I think I may say with reasonable certainty

that, in order to cure him completely, all that weneed do is a simple and easy surgical operation—namely, to remove these irritant bodies”—his eyes.To which a blind elder replies: “Thank Heaven forscience!”

Wells’s story of confrontations with difference issurprisingly relevant to a discussion about the per-missibility of using cochlear implants on prelin-gually deaf children. Given that 90 percent of deafchildren are born to hearing parents, it should notsurprise us that hearing parents, upon discoveringthat their child is deaf, perceive the child as essen-tially different and seek out any means available toremove this difference. These parents have realized,after all, that they have a “disabled” child; a childwho is “abnormal.” And this designation of abnor-mality, far from being a neutral, descriptive catego-ry, carries evaluative import:2 the child will be per-ceived through the socially available constructionsof normal functional ability and the attendant sig-nificance of deviation from the established norm.According to many among the hearing, the life of adeaf person is a priori an unfortunate and pitiablelife, and is considered by some to be a full-scaletragedy. The hearing parents of the deaf child,themselves members of hearing society and wellaware of the so-called abnormality of deafness, will

Robert A. Crouch, “Letting the deaf Be Deaf: Reconsidering theUse of Cochlear Implants in Prelingually Deaf Children,” HastingsCenter Report 27, no. 4 (1997): 14-21.

In theory, cochlear implants hold out the possibility of enabling profoundly prelingually deaf

children to hear. For these children’s parents, who are usually hearing, this possibility is a great relief.

Yet the decision to have this prosthetic device implanted ought not to be viewed as an easy or obvious

one. Implant efficacy is modest and the burdens associated with them can be great. Moreover, the

decision to forgo cochlear implantation for one’s child, far from condemning her to a world of meaningless

silence, opens the child up to membership in the Deaf community, which has a rich history, language, and

value system of its own.

LLeettttiinngg tthhee ddeeaaff BBee DDeeaaffRReeccoonnssiiddeerriinngg tthhee UUssee ooff CCoocchhlleeaarrIImmppllaannttss iinn PPrreelliinngguuaallllyy DDeeaaff CChhiillddrreenn

by Robert A. Crouch

“

H A S T I N G S C E N T E R R E P O R T 15July-August 1997

naturally turn to the medical com-munity in the hope that their child’sdisability will be “fixed.”

In the hands of the medical pro-fessionals, the deaf child is putthrough a battery of auditory testsdesigned to uncover defects and, infact, to “decompose” the child into“functions and deficits.”3 The deafchild is then placed into one of manyavailable categories: severe or pro-found hearing impairment, moderatehearing impairment, or some residualhearing present. One otologist invid-iously categorizes such patients asbeing bronze, silver, or gold perform-ers, respectively.4 If the hearing im-pairment is sufficiently severe, thechild will be a potential candidate fora cochlear implant—a prosthetic de-vice that can presumably correctdeafness.

The parents discover in their in-teractions with the medical team thatthe socially available, culturally con-structed views of difference are notlimited to the general public: themedical community too conceptual-izes deafness essentially as disabilityand abnormality. But it goes furtherthan that, for the perils of deafnessare great. Images of banishment andisolation abound. One writer claimsthat the deaf are “cut off from theirfamilies and other hearing people.”5

Echoing this sentiment, an otologistwrites that the deaf are “like foreign-ers in their own country.”6 The med-ical profession, implicitly endorsingSamuel Johnson’s remark that deaf-ness is “one of the most desperate ofhuman calamities,” has adopted thegoal of fixing the hearing loss of itsyoung patients.7

Such an approach is clearly appar-ent in a recent editorial by the editor-in-chief of an ear, nose, and throatjournal. Referring to the world of thedeaf as “a world of silence,” the edi-tor-in-chief writes, “There is in factlittle reason to condemn anyone to bea prisoner of deafness,” and goes onto conclude, “It is not only to the ad-vantage of the child and his or herfamily to eliminate hearing loss, butalso to society, which will see in-

creased benefits from these produc-tive individuals” (emphasis added).8

The implications are clear: thedeaf serve no useful purpose in oursociety, and should be “cured” or“fixed” so that, among other things,we will all benefit from their new-found “productivity.”9

The Problem

The central concern of this paperis the problematic use of coch-

lear implants in “prelingually” deafchildren; namely, those who are borndeaf or who become deaf before anymeaningful acquisition of oral lan-guage has taken place (roughly, be-fore three or four years of age). Myarguments against the use of cochlearimplants do not apply to postlingual-ly deafened adolescents and adults.And while I will be principally con-cerned throughout with deaf chil-dren of hearing parents, my views areequally applicable to deaf children ofdeaf parents.

In theory, the use of cochlear im-plants holds out the possibility of giv-ing hearing to profoundly prelingual-ly deaf children. In this regard, theuse of cochlear implants in prelin-gually deaf children may be con-ceived of as an intervention that candetermine community membership.In other words, the cochlear implantis intended to help the deaf child ul-timately learn an oral language and,in so doing, to facilitate the assimila-tion of the implant-using child intothe mainstream hearing culture.When the child receives a cochlearimplant, he or she is put on a lifelongcourse of education and habilitation,the focus of which is the acquisitionof an oral language, and ultimately, ameaningful engagement with thehearing world.

Hearing parents, not surprisingly,almost always decide that it is intheir child’s best interests to be “likeus”; that is, to be hearing. Of course,given our predominantly hearing so-ciety, parents are also likely to believethat being hearing is objectively bet-ter than being deaf. Regardless of the

parental motivation, these considera-tions underscore my claim that theintervention of cochlear implanta-tion can be thought of as one thatdetermines community membership.Struck by the otherness of the lifethat they imagine their child willlead—a life they imagine to be liketheir own lives would become if theywere now suddenly to lose their hear-ing—parents will usually choose toprovide their child with as muchhearing as is medically possible eitherto prevent a chasm from opening upbetween them and their child (so thattheir child is in the same communityas they are), or to avert what they be-lieve will be the tragedies of a lifebereft of sound (so that their child isin the “better” community).

The hope these parents have ismade possible by the cochlear im-plant, an electronic device that con-sists of an externally worn speechprocessor and headset transmitter,and a surgically implanted receiver-stimulator. Incoming speech isprocessed and transmitted throughthe skin to the implanted device,which then directly stimulates theauditory nerve of the child, thus by-passing the dysfunctional nerve end-ings within the deaf child’s cochlea.Not all children who are born withprofoundly impaired hearing, howev-er, are potential candidates for coch-lear implantation. The National Insti-tutes of Health, in its consensus state-ment dealing with cochlear implantsin adults and children, recently artic-ulated a set of eligibility criteria to aidclinicians in identifying those whomight reasonably be expected to ben-efit from a cochlear prosthetic. Pro-spective candidates must be olderthan two years of age; they must haveprofound bilateral sensorineural hear-ing loss with a hearing thresholdgreater than 90 dB (as a point of ref-erence, the threshold of those with-out hearing loss is less than 25 dB)10;they must have used conventionalhearing or vibrotactile aids and havereceived little or no benefit from suchaids; the family and the child mustdisplay high motivation and appro-


priate expectations vis-à-vis the coch-lear implant; and there must be nomedical, financial, or psychosocialcontraindications to implantation.11

Once selected and implanted,however, what can the child and thefamily expect from the cochlear im-plant? The most basic aim of thecochlear implant is to help the childperceive sound, and in this limitedcapacity the implant does work. Ulti-mately, however, the pragmatic goal

of the cochlear implant is to facilitatethe entrance of the previously deafchild into the hearing community. Toaccomplish this end, the followingthree conditions must obtain. First,the implant-using child must learnhow to perceive, not merely sound,but speech. That is, the child must beable to identify parts of speech—forexample, that the word just spokenhas two syllables and that the stressis on the second syllable. And thechild must be able to identify spokenwords—for example, that the wordjust spoken was “dog.” Second, oncethe child can identify speech and itscomponents, she must then learnhow to produce intelligible speech her-self; if one is to function in the hear-ing world, one must be understood.Finally, the child must be able to ac-quire an oral language, by which Imean that the child must be able tohear and understand speech and thenbe able to respond intelligibly ingrammatically correct speech.

Given the above three necessaryconditions for the possibility of be-coming a fully functional member ofhearing society, the idea behind thecochlear implant is simple: the morespeech a child can perceive, the easi-er it will be for that child to under-stand speech, to produce intelligible

speech, and ultimately, to function inoral English. As one enthusiasticotologist claimed, “cochlear implantscan drastically alter the future formost hearing-impaired children andtake them into the 21st century asproductive citizens in the hearingcommunity.”12

Has experience borne out such aproclamation? The results of longitu-dinal studies suggest that many deafchildren who use and train with

cochlear implantsfor extended peri-ods of time do notimprove their oralcommunica t ionskills sufficiently toenable them to be-come functioningmembers of hearingsociety. In terms of

speech recognition, the gains afford-ed by cochlear implantation for manyprelingually deaf children are modest,especially if we recall that these chil-dren are engaged in auditory trainingand habilitation every day, be it athome with the parents, in the clinic,or in the school.13 Similarly modestgains are observed when it comes tothe speech production capabilities ofimplant-using children. A recentstudy showed that after five years ofimplant use the mean score for cor-rect pronunciation of vowel soundswas 70 percent; although 70 percentis encouraging, this is a small benefitwon only after five hard years of orallanguage habilitation, and a benefitthat doubtfully brings the child clos-er to the ultimate goal of immersionin the hearing culture.14 Moreover, inanother study that measured thespeech intelligibility of prelinguallydeaf children who had used theircochlear implants for three and a halfyears or more, only approximately 40percent of the words spoken by thesechildren were understood by a panelof three persons.15

Of course, there will always besuccess stories among implant-usingprelingually deaf children. Yet suchsuccesses are so infrequent that focus-ing on them would misrepresent clin-

ical reality. Despite the limited suc-cesses of the few, and despite the suc-cesses of the many on audiologicaltests of lesser importance, the perfor-mance of the cohort of interest onspeech perception, production, andintelligibility is quite poor. The orallanguage acquisition skills in manyimplant-using children is at this stageessentially nonexistent.

The vexing clinical problem pre-sented by prelingually deaf children isthat unlike postlingually deafenedchildren or adults, the prelinguallydeafened child has no solid linguisticfoundation in place prior to the onsetof deafness to enable the learning ofan oral language. While the postlin-gually deafened person, once fittedwith a cochlear implant, can main-tain his or her present speech produc-tion capabilities and relearn to hear,the prelingually deaf child using acochlear implant must be intensivelytaught and trained to recognize andproduce each vowel and consonantsound and each word from theground up. For the implant-usingprelingually deaf child, then, the pathto oral language development is along and arduous one beset withmany pitfalls, where there seems tobe no guarantee that the destinationwill be reached.

Overcoming the Narrative of Disability

The evidence suggests, then, thatthe benefits of cochlear implan-

tation in many prelingually deaf chil-dren are modest. A general problemwith the information available is thatit has only been a little over six yearssince the U.S. Food and Drug Ad-ministration gave pre-market ap-proval to implant children with theNucleus-22 multichannel cochlearimplant. Longitudinal studies withlonger follow-up periods would beneeded to determine more clearlywhat the peak benefits of implant usecan be in this population. Nonethe-less, with the available information,we might reasonably ask whether thebenefits associated with the use of

We should rethink the policy of using

implants in many prelingually deaf

children and examine other options.


cochlear implants outweigh the bur-dens of this procedure, and whetherthere are other reasonable options fordeaf children. Although the cochlearimplant works quite well in popula-tions of postlingually deafened per-sons,16 the good results of those stud-ies simply cannot be generalized toprelingually deafened children. I be-lieve that given the current state ofknowledge vis-à-vis cochlear implantefficacy, the burdens associated withcochlear implant use do indeed out-weigh the benefits and we should re-think the policy of using implants inmany prelingually deaf children andexamine other options.

However, as with many newly in-troduced medical interventions, it isnot unreasonable to expect that fiveto ten years hence, when more fol-low-up years have been observed andwhen possible improvements in tech-nology have been made, otologistsand audiologists will be able to claimgreater successes for the cochlear im-plant in prelingually deaf children.Yet even if such were the case, Iwould invoke another, perhaps morefundamental critique. It is my con-tention that the predominant viewof deafness—that the deaf are “mere-ly and wholly” disabled17—is wrongand that we should quickly disabuseourselves of this ill-begotten notion.Considered in the proper light, thedecision to forgo cochlear implanta-tion for one’s child, far from con-demning a child to a world of mean-ingless silence, opens the child up tomembership in the Deaf communi-ty, a unique community with a richhistory, a rich language, and a valuesystem of its own.18 Thus, contrary topopularly held beliefs, the child whois permitted to remain deaf can lookforward to acquiring a language,namely, American Sign Language(ASL), or whatever signed language isindigenous to the child’s geographicalarea. And when the child has ac-quired such a language, she therebypossesses the language of an activecultural and linguistic minority group,which can then serve as the linguisticfoundations upon which new written

languages can be built, thereby ensur-ing access to the wider hearing soci-ety. Once we conceive of the Deaf asbeing members of a linguistic andcultural minority, our moral land-scape should be altered. My beliefsregarding the value of Deaf culture,the richness of the lives of Deaf per-sons, and the importance of recog-nizing and overcoming our culturalbiases regarding the Deaf wouldtherefore be unchanged by a dramat-ic improvement in implant efficacy.

What I hope to demonstrate, then,is that parents of prelingually deafchildren have a reasonable basis uponwhich to refuse a cochlear implant fortheir child, either presently, becauseof a mix of reasons, including poorimplant efficacy, the burdens associ-ated with ineffective implant use,and the benefits of membership inthe Deaf community, or at some un-known point in the future whencochlear implants might work withgreatly improved efficacy, because ofthe benefits of membership in theDeaf community. I do not endorsethe view that the only reason it isacceptable to be a member of theDeaf community is that there is noway to treat one’s impaired hearing.This paper represents, then, one re-sponse to a current medical and soci-etal state-of-affairs. I ask: Given theefficacy of cochlear implants inprelingually deaf children, and giventhe authentic nature of signed lan-guages and Deaf communities, whatare some of the options available forprelingually deaf children, and whichoption might be reasonable tochoose? While many may find theterms in which the debate is present-ly carried out philosophically unin-teresting, preferring instead to exam-ine a possible world where cochlearimplants were significantly effica-cious, the present moral problem as Isee it seems sufficiently worthy ofattention.

It is important at this point to un-derstand why the goal of implanta-tion and oral language habilitationhas been pursued so aggressively. It isnot, I would claim, being pursued

simply because of the benefits thatcome with being able to hear in a pre-dominantly hearing society, but moreimportantly it is also being pursuedbecause of the perceived burdens as-sociated with being deaf. Indeed,given the rather poor efficacy ofcochlear implants in many prelin-gually deaf children, there seems tobe an implicit belief that while im-plants may not work that well, surelysome hearing and oral language,however rudimentary, is better thannone. To take one example, support-ers of cochlear implant use frequentlyrecite the fact that by the age of five,a child with no hearing impairmentwill commonly have a vocabulary ofbetween 5,000 and 26,000 words,while at the same age a deaf child willhave a far inferior vocabulary of only200 signed or spoken words.19 Theimplication of this line of thought isthat deaf children should be fittedwith cochlear implants and that ex-clusive oral language instructionshould be pursued aggressively sothat such tragic outcomes can beavoided. While this reasoning doesdisplay its own internal logic, itshows little sensitivity to the deafchild’s educational context, and tothe history of the education of thedeaf, which has produced generationsof deaf persons who have sufferedfrom linguistic and educational ne-glect.20 Once we recognize that his-torically deaf children have been edu-cated predominantly in an oral-onlyenvironment—despite their imper-fect auditory systems and to the ex-clusion of ASL training—it shouldnot surprise us that their vocabulariesare often much smaller, and that theiremotional and social development sooften lags behind that of their hearingcounterparts.

To be sure, the education of deafchildren has improved somewhat inthe last forty years, but the denial ofthe Deaf perspective chiefly remains.For example, legislation, in the formof the Individuals with DisabilitiesEducation Act (IDEA-B) of 1975,mandated that the educational segre-gation of deaf children be stopped

and that the deaf be “mainstreamed”into regular hearing classrooms sothat their oral skills would improve,and with them their emotional andsocial skills. However, with its em-phasis on educational integration, theIDEA-B purchased increased accessto oral education for deaf children at

the cost of a dramatic decrease in thequality of their education.21 Often,the best that the deaf student canhope for is to be given access to anunskilled ASL interpreter, or to aninterpreter in the classroom whoknows no ASL and who works onlyin manually coded English—a manu-al form of English that follows therules of English grammar, and thatseems not to help deaf children learnEnglish.22 The life of a deaf child insuch a mainstreamed educational en-vironment can also be very difficultsocially. A boy in the eighth gradewho testified before the U.S. Nation-al Council on Disabilities began bydeclaring, “I’m not disabled, justdeaf,” and went on to give an accountof how it feels to be forced into an ed-ucational environment where the fo-cus is on oral English acquisition. Hetestified: “Learning through an inter-preter is very hard; it’s bad socially inthe mainstream; you are always out-numbered; you don’t feel like it’s yourschool; you never know deaf adults;you don’t belong; you don’t feel com-fortable as a deaf person.” Anotherboy, also attempting to learn oralEnglish at school, put it more starkly:“I hate it if people know I am deaf.”23

The perspective of the Deaf in cre-ating educational policies for the Deafhas mostly been ignored, and conse-quently, the outcome of the “educa-tion” of deaf children by means ill-

suited, inimical in fact, to their needs,perpetuates the stereotypical view ofdeaf people as disabled and slowerwitted than their hearing counter-parts. Against such an historical back-ground, the proper response is not tomaintain that deaf people will un-avoidably lead impoverished and

fragmentary lives, butrather to start payingattention to the Deafpoint of view and torealize that positivechange can thereby beeffected.

As with previousstrategies for the deaf,the decision to pursuecochlear implantation

and auditory habilitation for one’schild also has burdens associated withit beyond the failure to achieve orallanguage competence. The childwhose life is centered upon disabilityand the attempt to overcome it growsup in a context that continually rein-forces this disability, despite his or herown best efforts to hear and to speakand despite the diligent work of theeducators of the deaf and hearing-im-paired. These children are thereforealways aware that they are outsiders,and not merely outsiders, but out-siders attempting to be on the inside.This narrative of disability withinwhich the deaf implant-using childlives is not the only one available toher. There is an alternate narrative inreference to which the child mayjudge her own life and it is the onethat exists within the Deaf communi-ty. Simply put, my concerns aboutthe burdens of using cochlear im-plants in prelingually deaf childrencan be reduced to a cluster of consid-erations grouped under the headingof “opportunity costs.” One of themain burdens of implanting a childand setting her on the course of audi-tory habilitation is that it deprives herof the alternate linguistic, education-al, and social opportunities that theDeaf community can offer her, while(presently) offering a poor guaranteethat functional membership in thehearing community will materialize.

Contrary to what many believe,the Deaf community has a distincthistory, language, and value systemthat plays a central role in the lives ofits members. Two prominent mem-bers of the American Deaf communi-ty have noted that the beliefs andpractices that make up the culture ofDeaf people should not be viewedsimply as “a camaraderie with otherswho have a similar physical condi-tion,” but rather as “like many othercultures in the traditional sense of theterm, historically created and activelytransmitted across generations.”24

Members of the Deaf communityhave their own language that, farfrom being merely a means of com-munication, is also, as are other lan-guages, a “repository of culturalknowledge and a symbol of socialidentity.”25 In contrast to HelmerMyklebust’s claims that the manualsigned languages of Deaf personswere “inferior to the verbal as a lan-guage” because they lacked “preci-sion, subtlety, and flexibility,” andthat humans would not be able toachieve their “ultimate potential”through signed languages,26 CarolPadden and Tom Humphries haveargued that

Despite the misconceptions, forDeaf people, their sign language isa creation of their history and iswhat allows them to fulfill the po-tential for which evolution hasprepared them—to attain fullhuman communication as makersand users of symbols. (emphasisadded) (p. 9)

Thus, the deaf child no less than thehearing child has all the requisiteskills that will enable her to achieve adifferent, but no less human, expres-sive potential.

The key point is that this narrativeis a validating narrative; it is, in otherwords, a socially available story towhich the child may refer whenbuilding his own life and makingsense of that life and the lives ofthose around him. As the child learnsabout adult members of his Deafcommunity, or historic Deaf figures,


The deaf child no less than the hearing

child has all the requisite skills that will

enable her to achieve a different, but

no less human, expressive potential.

or the history of ASL, or Deaf poetryand theater he “gains ideas of [the]possible lives that he can lead andfinds a basis for self-esteem in a [hear-ing] society that insists he is inferi-or.”27 But it does more than that: italso provides a basis for self-respect,that is, for the Deaf child’s sense ofdignity according to the community’sacceptance and valorization of theDeaf way of being-in-the-world.28

Identification with the Deaf commu-nity is important, then, because itopens up a cultural space withinwhich the Deaf themselves may estab-lish their own norms, and withinwhich one’s sense of personal dignityis thereby engendered. Access to thevalidating narrative of the Deaf com-munity will thus enable Deaf chil-dren to see themselves in a more pos-itive light, while their peers andteachers will see them in this wayand relate to them as similarly situat-ed individuals in a shared story.

The implant-using child, althoughnominally within hearing culture, is,as I have claimed, virtually con-demned to be an outsider—not onlyfrom the perspective of the hearingworld, but also from the perspectiveof the Deaf world, which generallylooks down upon those who attemptto be, as they say, ORAL. The childwho embraces Deaf culture, on theother hand, will have a context, hewill have a milieu in which to makesense of his life, and he will be aninsider.

A key component of this view in-volves regarding members of theDeaf community as part of a linguis-tic minority. In my discussion of thegoals of cochlear implants above, Iclaimed that the aim of the implantwas to facilitate the entry of the hear-ing-impaired child into the hearingworld. Two of the necessary condi-tions of entry were sufficiently com-petent speech production capabilitiesas well as the acquisition of an orallanguage. But as I claimed, intelligi-ble speech production is virtuallydenied to many implant-using pre-lingually deaf children, and conse-quently, so too is oral language acqui-

sition. Indeed, although intelligibleoral language acquisition is only mar-ginally possible, language acquisitionneed not be at all: “sign or speech canserve as the vehicle of language.”29

As with other signed languages,ASL is not a manual version of Eng-lish; it is, rather, a distinct languagewith a syntax and a grammar inde-pendent of English.30 “Languages,” asHarlan Lane has observed, “haveevolved within communities in a wayresponsive to the needs of those com-munities. ASL is attuned to the needsof the deaf community in the UnitedStates; English is not.”31 This pointhas important consequences for theissue at hand. For the prelinguallydeaf child, signed languages are ac-quired with far greater facility thanspoken languages are acquired bythose using cochlear implants, andthere is no evidence to indicate thatthe use of ASL will interfere with thechild’s ability to learn written Eng-lish, or any other written languages.32

On the contrary, the deaf childrenwho perform the best on measures ofeducational and language achieve-ment are the 10 percent who comefrom deaf parents and who learnedASL as a first language.33 Thus, learn-ing ASL as a primary language willenable the learning of written Englishas a second language, and this famil-iarity with written English leads tofurther successes in the educationaland occupational disciplines to whichthe written word gives access, therebyincreasing the Deaf person’s linkswith the wider hearing community.

Placing prelingually deaf childrenin an environment where they canonly learn oral language through animperfect auditory system (even withcochlear implants) disadvantagesmany of them because not only dothey fail to acquire an oral language,but perhaps more harmfully, theirexposure to ASL is delayed, thusmaking their acquisition of ASL (andwritten English) far more difficultand incomplete.34 The delay in theacquisition of ASL caused by the im-plant-using child’s attempt to learnan oral language will delay the child’s

exposure to and engagement with theDeaf community, and is unlikely tohelp the child assimilate into thehearing community. Denying prelin-gually deaf children the opportunityto immerse themselves immediatelyin ASL puts them between two cul-tures and within neither of them, asituation we should strive to avoid.

Thinking Clearly aboutDeafness and Disability

I began this paper with a storyabout a dual confrontation with

difference: a confrontation betweenvision and blindness. Just as Nunez’sdisbelief that the blind could actuallybe happy and fulfilled without visionwas inappropriate, so have I arguedthat the belief that the Deaf need becut off from the world is similarly in-appropriate and shows a great lack ofunderstanding on the part of thehearing. Medical professionals andthe hearing parents of deaf childrenshould be finely aware of the conse-quences of implanting a prelinguallydeaf child with a cochlear prosthetic.Cochlear implantation is, as I sug-gested above, a unique interventionin that it may rightly be conceived ofas one that determines communitymembership. It is therefore all themore important for those who aretouched by this debate to carefullyconsider the social context in which ittakes place and to realize that it is anissue informed by many perspectives.Since cochlear implant technology isrelatively new, it is therefore muchmore urgent to be aware of and re-sponsive to the historical treatment ofdeaf persons. Many of our presentideas regarding the deaf are a directresult of the historical silencing ofthis population and the exclusivelyoral educational policies for the deafthat this silencing set in motion, thetragic results of which can still be wit-nessed today. Given this historicalbackground and its social and educa-tional legacy, it is not surprising thatthe idea of letting one’s child be Deafis met with shock and opposition.But if one has a more realistic view of


what cochlear implants can and can-not do, of what deafness is and is not,and of the richly rewarding lives Deafpeople can lead, then it is by nomeans clear that the use of cochlearimplants is justified in many prelin-gually deaf children, nor again is itclear that hearing parents of deaf chil-dren are aware of the options open tothem when faced with the questionof how to raise their deaf child.

The decision to forgo cochlearimplantation for one’s child is un-doubtedly a difficult one for hearingparents to make. Not only must par-ents consider their child’s future, theymust also consider their own interestsand that of other family members.What will it be like to have a deafchild? How difficult will it be to learnASL? Will a deaf child adversely af-fect family dynamics? Although thechild is the particular family memberwho is deaf, the family unit as awhole is undoubtedly affected by thedeafness.35 Consequently, the attitudeand commitment of the hearing fam-ily members toward the deaf child isof central importance to the child’semotional, educational, and socialprogress, as well as to the integrity ofthe family.36 Deaf children need notbe estranged from their hearing fami-lies (as some have claimed) if the fam-ily members are willing to make therequired social changes and if theycommit to learning ASL with theirchild. Indeed, one might say in gen-eral that communication betweenhearing and Deaf persons is primarilyabout connection rather than sound.A recognition of this fact will make itclear to parents that they can, withsustained efforts to be sure, raise theirdeaf child in such a way that he orshe can lead a fulfilling and completelife.

In my case for the legitimacy andimportance of the Deaf communityto the prelingually deaf child, I hopeI have provided reasonable groundsupon which parents can refusecochlear implants for their child. It isimpossible, of course, to construct aconvincing argument that will beapplicable to all deaf children, given

the different expressive capabilities(sign or oral) that such children willinvariably possess. But I hope to haveavoided some of the problematic ele-ments that come with, on the onehand, the arguments of those whomaintain that all cochlear implanta-tion is a form of cultural genocide,and, on the other hand, the argu-ments of those who believe thatcochlear implants are a panacea.

Acknowledgments

I would like to thank the Fonds pourla Formation de Chercheurs et l’Aide à laRecherche (Quebec, Canada) for re-search funds while I was working onthis project. I am thankful to the fol-lowing people for their helpful com-ments and criticisms: Carl Elliott,Karen Lebacqz, Jamie MacDougall,Gilles Reid, Lainie Friedman Ross,Charles Weijer, Anna Zalewski, the ed-itors of the Report, and three anony-mous reviewers. I am also thankful toaudiences at the 7th Annual CanadianBioethics Society Conference in Van-couver (1995), at the McGill Universi-ty Biomedical Ethics Unit in Montreal(1996), at the Montreal Children’sHospital (1996), at the Annual Meet-ing of the Society for Health andHuman Values/Society for BioethicsConsultation in Cleveland (1996), andat the University of Virginia HealthSciences Center in Charlottesville(1997) who heard and commentedupon earlier versions of the paper.

I would like to dedicate this paperto the memory of my first bioethicsteacher, Benjamin Freedman.

References

1. H. G. Wells, The Country of the Blindand Other Stories (London: T. Nelson &Sons, 1911), pp. 536-68.

2. On the origins, circa 1835, of the ideaof measuring different characteristics of apeople in order to determine “normality,”see Ian Hacking, The Taming of Chance(Cambridge: Cambridge University Press,1990), pp. 107-8.

3. The view that certain medical tests“decompose” patients into “functions anddeficits” is found in Oliver Sacks, The ManWho Mistook his Wife for a Hat (New York:Harper Collins, 1987), p. 181.

4. Richard T. Miyamoto et al., “SpeechPerception and Speech Production Skills ofChildren with Multichannel Cochlear Im-

plants,” Acta Oto-Laryngologica 116 (1996):240-43.

5. John C. Rice, “The Cochlear Implantand the Deaf Community,” The MedicalJournal of Australia 158, no. 1 (1993): 66-67, at p. 66.

6. Michael E. Glasscock, “Education ofHearing-Impaired Children in the UnitedStates,” The American Journal of Otology 13,no.1 (1992): 4-5, at p. 5.

7. As quoted in Oliver Sacks, Seeing Voic-es: A Journey into the World of the Deaf (NewYork: Harper Perennial, 1989), p. 1.

8. Jack L. Pulec, “The Benefits of theCochlear Implant,” Ear Nose and ThroatJournal 73, no. 3 (1994): 137.

9. Others have made similarly objec-tionable remarks regarding deaf persons. Inhis Presidential Address read before theAmerican Society of Pediatric Otolaryngol-ogy, Robert J. Ruben draws the link be-tween hearing losses and criminal behavior,and he warns us that those with “communi-cations disorders”—such as those with hear-ing losses, and those who are deaf—presenta threat to the progress and prosperity ofAmerica because they are “economicallyburdensome and destructive of the socialfabric.” See, Robert J. Ruben, “Critical Peri-ods, Critical Time: The Centrality of Pedi-atric Otolaryngology,” Archives of Otolaryn-gology–Head and Neck Surgery 122, no. 3(1996): 234-36.

10. Thomas Balkany, “A Brief Perspectiveon Cochlear Implants,” NEJM 328 (1993):281-82, at p. 281.

11. National Institutes of Health,Cochlear Implants in Adults and Children.NIH Consensus Statement 13, no. 2 (1995):1-30, at pp. 18-20.

12. Glasscock, “Education of Hearing-Impaired Children in the United States,” p. 5.

13. Richard T. Miyamoto et al., “Prelin-gually Deafened Children’s Performancewith the Nucleus Multichannel CochlearImplant,” The American Journal of Otology14, no. 5 (1993): 437-45; John J. Shea IIIet al., “Speech Perception after Multichan-nel Cochlear Implantation in the PediatricPatient,” The American Journal of Otology15, no. 1 (1994): 66-70; Harlan Lane, “Let-ters to the Editor,” The American Journal ofOtology 16, no. 3 (1995): 393-99.

14. Bruce J. Gantz et al., “Results ofMultichannel Cochlear Implants in Con-genital and Acquired Prelingual Deafness inChildren: Five-year Follow-up,” AmericanJournal of Otology 15, Suppl. no. 2 (1994):1-7.

15. Miyamoto et al., “Speech Perceptionand Speech Production Skills of Childrenwith Multichannel Cochlear Implants.”

16. Noel L. Cohen et al., “A Prospective,Randomized Study of Cochlear Implants,”NEJM 328 (1993): 233-37.


17. The phrase “merely and wholly” dis-abled is inspired by Oliver Sacks (The ManWho Mistook his Wife for a Hat, p. 180), andis invoked to express the view that the deafare disabled and nothing other than dis-abled people.

18. The convention in the literature isto put the word deaf in lower case whenreferring to the biological condition of notbeing able to hear, and upper case, Deaf,when referring to the cultural aspects ofbeing deaf.

19. American Academy of Otolaryngolo-gy–Head and Neck Surgery Subcommitteeon Cochlear Implants, “Status of CochlearImplantation in Children,” The Journal ofPediatrics 118, no. 1 (1991): 1-7; Balkany,“A Brief Perspective on Cochlear Implants.”

20. The history of the education of deafpersons is indeed a tragic one, consisting ofa series of ignorant and destructive deci-sions made by the hearing on behalf of thedeaf. What runs through this history of thelast two hundred years is a systematic sup-pression of the Deaf perspective. Of course,the great triumph for the Deaf is that de-spite the attempts of the hearing to do awaywith ASL, it survives to the present daylargely unchanged from what it was, say,one hundred years ago. Two excellent ac-counts of this story are, Harlan Lane, Whenthe Mind Hears: A History of the Deaf (NewYork: Vintage, 1984); Douglas C. Baynton,Forbidden Signs: American Culture and theCampaign Against Sign Language (Chicago:University of Chicago Press, 1996).

21. On this see, Sy Dubow, “‘Into theTurbulent Mainstream’—A Legal Perspec-tive on the Weight to be Given to the LeastRestrictive Environment in Placement De-cisions for Deaf Children,” Journal of Law

& Education 18, no. 2 (1989): 215-28;Kathryn Ivers, “Towards a Bilingual Educa-tion Policy in the Mainstreaming of DeafChildren,” Columbia Human Rights LawReview 26 (1995): 439-82.

22. David A. Stewart, “Bi-Bi to MCE?”American Annals of the Deaf 138, no. 4(1993): 331-37.

23. As quoted in Lane, The Mask ofBenevolence, pp. 136-7.

24. Carol Padden and Tom Humphries,Deaf in America: Voices from a Culture(Cambridge, Mass.: Harvard UniversityPress, 1988), p. 2.

25. Lane, The Mask of Benevolence, p. 45.26. Helmer R. Myklebust, The Psycholo-

gy of Deafness: Sensory Deprivation, Learningand Adjustment (New York: Grune andStratton, 1960), pp. 241-42. This passagewas quoted in Padden and Humphries,Deaf in America, p. 59.

27. Lane, The Mask of Benevolence, p.172.

28. I am relying on the distinction be-tween self-esteem and self-respect articu-lated by Michael Walzer in Spheres of Jus-tice. According to Walzer, while self-esteemis a relational concept—one dependentupon the relative standing of citizens—self-respect is an external, normative con-cept—one dependent upon the “moralunderstanding of persons and positions”within the community. See, Michael Walz-er, Spheres of Justice: A Defense of Pluralismand Equality (New York: Basic Books,1983), pp. 272-80, at 274.

29. David M. Perlmutter, “The Lan-guage of the Deaf,” The New York Review ofBooks 38, no. 7 (1991): 65-72, at p. 72.

30. Edward Klima and Ursula Bellugi,The Signs of Language (Cambridge, Mass.:Harvard University Press, 1979); Scheinand Stewart, Language in Motion; Perlmut-ter, “The Language of the Deaf.”

31. Lane, The Mask of Benevolence, p.125.

32. Heather Mohay, “Letters to the Edi-tor: Opposition from Deaf Groups to theCochlear Implant,” The Medical Journal ofAustralia 155, no. 10 (1991): 719-20.

33. As noted in Lane, The Mask of Benev-olence, p. 138. See, Abraham Zwiebel,“More on the Effects of Early ManualCommunication on the Cognitive Devel-opment of Deaf Children,” American An-nals of the Deaf 132, no. 1 (1987): 16-20;Ann E. Geers and Brenda Schick, “Acquisi-tion of Spoken and Signed English byHearing-Impaired Children of Hearing-Impaired or Hearing Parents,” Journal ofSpeech and Hearing Disorders 53, no. 2(1988): 136-43; Stephen P. Quigley andRobert E. Kretschmer, The Education ofDeaf Children: Issues, Theory, and Practice(London: Edward Arnold, 1982).

34. Mohay, “Letters to the Editor: Op-position from Deaf Groups to the CochlearImplant.”

35. William H. McKellin, “Hearing Im-paired Families: The Social Ecology ofHearing Loss,” Social Sciences and Medicine40, no. 11 (1995): 1469-80.

36. Deborah Henderson and Anne Hen-dershott, “ASL and the Family System,”American Annals of the Deaf 136, no. 4(1991): 325-29; Debra D. Desselle, “Self-esteem, Family Climate, and Communica-tion Patterns in Relation to Deafness,”American Annals of the Deaf 139, no. 3(1994): 322-28.


letting the deaf be deaf reconsidering the use of cochlear implants in prelingually deaf children

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