Empowering the Deaf. Let the Deaf Be Deaf

40 J Epidemiol Community Health 2000;54:40–44 Empowering the deaf. Let the deaf be deaf Irma M Munoz-Baell, M Teresa Ruiz Abstract quence is, therefore, the rejection of the use of Deafness is often regarded as just a one sign language in schools. and only phenomenon. Accordingly, deaf However, an ever increasing number of deaf people are pictured as a unified body of people do not consider themselves to be handi- people who share a single problem. From capped or disabled7 but claim to be seen and a medical point of view, we find it usual to respected as a distinct cultural group with its work with a classification of deafness in own beliefs, needs, opinions, customs and lan- which pathologies attributable to an inner guage. Members of the deaf community define ear disorder are segregated from patholo- deafness as a cultural rather than an audiologi- gies attributable to an outer/middle ear cal term. The sociocultural model recognises disorder. Medical intervention is thus significant sociolinguistic diVerences between concerned more with the origin, degree, people who label themselves deaf and people type of loss, onset, and structural pathol- who label themselves hard of hearing, people ogy of deafness than with communicative who feel proud of their belonging to the deaf disability and the implications there may community and those who reject it, because in be for the patient (mainly dependency, general they belong to separate cultural and denial of abnormal hearing behaviour, low linguistic realities. It is therefore reasoned that self esteem, rejection of the prosthetic hearing impaired people need to be grouped help, and the breakdown of social relation- separately for analysis. ships). In this paper, we argue that As we have just put forward, both perspec- hearing loss is a very complex phenom- tives are contradictory because they uphold enon, which has many and serious conse- diVering notions of deafness. When con- quences for people and involves many fronted, people who share one or the other factors and issues that should be carefully standpoint usually end up in unsolvable examined. The immediate consequence of conflicts, which are nothing but the result of deafness is a breakdown in communica- diVering expectations about each other’s be- tion whereby the communicative function haviour that necessarily clash. An example of needs to be either initiated or restored. In this can be found at present in some schools for that sense, empowering strategies—aimed deaf children, in which deaf parents’ advocacy at promoting not only a more traditional of the use of sign language as part of the school psychological empowerment but also a curriculum in the education of their children community one—should primarily focus comes into conflict with the hearing teachers on the removal of communication barri- anchorage in a still pretended importance of ers. competency in a spoken language as the only (J Epidemiol Community Health 2000;54:40–44) legitimate way of educating deaf children.89 Pathology/disability model versus sociocultural model of deafness The hearing community versus the deaf Over the past few years, two opposing perspec- community tives of conceptualising deafness in contempo- THE HEARING COMMUNITY rary society have been reported and discussed Historically, the dominant hearing culture has in scientific literature.1–5 The first one defines relegated deaf people to social categories such deafness as a pathological condition, while the as “handicapped” and “outsider”. The history second one regards deafness as a cultural iden- of oppression and exclusion of the deaf tifier. Consequently, both models have condi- community—although with important varia- tioned how recent research on deafness has tions depending on the countries—and the been conducted,6 and have strongly aVected ignorance and rejection of the natural and pre- and determined the social view of deaf people ferred means of communication of many of and their education. them is a well known and many times The pathology perspective focuses on the denounced phenomenon. Department of Public failure of the hearing mechanism. Deafness is However, deaf people are disabled more by Health, Edificio de defined as a medical condition that requires their transactions with the hearing world than Ciencias Sociales, some kind of remediation, either through by the pathology of their hearing impairment. Universidad de correction or compensation. This model finds Unfortunately, the social image of deafness is Alicante, Apdo de correos 99, 03080 that moderately and profoundly hearing im- still marked nowadays in too many countries Alicante, Spain paired people can be analysed and grouped not only by a deeply rooted pathological together for study.6 Moreover, it emphasises stigma10 11 but also by negative stereotypes12 Correspondence to: the need to encourage speech and lip reading and prejudiced attitudes13 14 toward the deaf I M Munoz-Baell. based on the assumption that competency in a that—attributable mainly to an extensive social Accepted for publication spoken language is the only means for cognitive lack of knowledge about communication 2 July 1999 development in the child.5 Its direct conse- mechanisms and how they work in conjunction Empowering the deaf 41 with culture—have unfavourably influenced criteria. What is more, belonging to the deaf medical, legal, and educational policies for the community serves as “therapy” for deaf deaf. people20 in many cases, and the importance of To a large extent, the world view of deafness using methods of bilingual-bicultural educa- has exerted an influence on so many issues of tion with deaf children rather than oralist concern to deaf people that a review of the methods is emphasised.21 subject emerges as vital at this point. Deafness acquired in adulthood is of a diVerent nature. Communication breaks down THE DEAF COMMUNITY when language has already been learned and is Many are the implications of being deaf, how- already in use. People grow reluctant to change ever little is known about them. Congenital or adapt their usual means of communication deafness has probably been the most and long- and find it extremely hard to adjust to the new est studied type of deafness because of the seri- situation. Changes after their hearing loss seem ous consequences early auditory deprivation an insurmountable obstacle for them alone to has on the intellectual, behavioural, cognitive, cope with. Embarrassment, loss of confidence, psychological, and social development of the anger and resentment are among the most child. Within this group, a distinction must be common feelings they have to deal with every- made between (a) deaf children born to deaf day. Noisy groups and strangers are avoided parents, who acquire sign language as a first and there is a growing preference to remain at language, (b) deaf children born to hearing home rather than to go out, which in many parents, who ignore the existence of or reject cases leads to inactivity, depression22 and isola- sign language,15 and (c) deaf children of tion. A persistent denial23 of the new situation families in which another member is deaf. springs from a view of it as illegitimate, some- The consequences of congenital deafness do thing to be ashamed of and hidden; hence, in not diVer from those resulting from acquired great part, a dislike for or rejection of hearing deafness in those cases in which people are aids. Deafness in the elderly can bring about born with normal hearing and lose their additional diYculties, such as the inability to hearing in early childhood, just before they insert the earmould, to name just one,24 as age come in contact with any spoken language. related hearing loss means both an adaptation However, they do diVer from the consequences to the hearing loss and to old age. resulting from acquired deafness when hearing Lastly, even though increasingly the number loss occurs in late childhood. This is the reason of persons with hearing loss in later life is much we usually talk about preverbal (or prelinguis- larger than that of those with hearing loss in tic) deafness to refer to the former and earlier life, people in the second group tend to postverbal (or postlinguistic) deafness to refer be better organised and active. The systematic to the latter.16 17 use of a classification similar to the one just On the other hand, deafness acquired in described would greatly contribute not only to adulthood creates problems that are diVerent obtaining exact figures on such a diVerence but from those of people who are born deaf or lose also to conducting and evaluating any course of their hearing in early or late childhood. Here action. again, though, we need to distinguish between occupational deafness and elderly deafness. Health promotion and deaf people The hearing and the deaf communities share It is clear, then, how heterogeneous the deaf a linguistic challenge. Both encounter a population is and how this fact has made it communication barrier when having to deal more diYcult to establish a set of general with each other. The diVerences then lie in how measures to deal with the diVerent issues this obstacle determines their lives and how facing this community. they perceive of it. It is also easy to see why there are so many For early onset deafness, prompt language associations and organisations nowadays deprivation has a direct eVect on how the child (formed by prelinguistic deaf people, parents of acquires social knowledge, that is, if social deaf children, cochlear implanted people, post- knowledge is naturally tied to language and linguistic deaf people, and interpreters, among social meaning, how can a deaf child with no others), not to mention the ferocious argu- language construct his world? Low self esteem, ments and resulting confrontations and dis- childhood social isolation and parental stress18 agreements they are often drawn into.

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