Empowering the Deaf. Let the Deaf Be Deaf

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Empowering the deaf. Let the deaf be deaf

Irma M Munoz-Baell and M Teresa Ruiz

J Epidemiol Community Health 2000;54;40-44 doi:10.1136/jech.54.1.40

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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 Downloaded from jech.bmj.com on 28 October 2008

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. are some of the consequences of a communica- To sum up, deafness implies diversity, and tion disability in childhood. Deaf people tend diversity in relation to hearing loss needs to be to have little education, low status jobs and low acknowledged, understood, and most impor- incomes. Social rejection and alienation from tantly, respected. the larger hearing community reinforce their It is paradoxical, if not highly reproachful, view of themselves as a cultural and linguistic that there still exists nowadays an enormous minority group.19 Yet,the culturally deaf do not gap in many countries between the legislation view themselves as handicapped or disabled and their recommendations favouring equal but as members of the so called deaf commu- opportunity for hearing impaired people on the nity. Membership in the deaf community must one hand (The European Parliament Resolu- be earned, and being deaf or having a certain tion on Sign Languages, 198825; UNO Uni- degree of hearing loss is not the only criterion form Rules Resolution, 199326; EU Committee for potential inclusion. A common language, Report, 1996,27 just to mention a few), and the shared experiences, social participation and a signs of incipient attention paid to deafness in sense of cultural identity are other recognised many countries on the other. Downloaded from jech.bmj.com on 28 October 2008

42 Munoz-Baell, Ruiz

European Union initiatives at both national and trans-national levels are making a signifi- KEY POINTS cant contribution to the empowerment of deaf x The medical point of view in the classifi- people. However, they also involve certain risks cation of deafness does not fit with the that need to be pointed out. Two of these needs of health promotion strategies in so projects shall be mentioned to illustrate such far as members of the deaf community risks. In this respect, for instance, the European define deafness as a cultural rather than Social Fund HORIZON Chapter of the audiological problem. Employment Initiative should ensure that the x Pathological stigma, negative stereotypes distribution of projects to deaf organisations and prejudiced attitudes towards the deaf with diVerent goals and levels of deaf awareness have unfavourably influenced medical, is carried out on an equal basis. In the same legal and educational policies. Deaf peo- line, the EU Technology Initiative for Disabled ple are disabled more by their transac- and Elderly People should ensure that the tions with the hearing world than by the devices being developed at present are dissemi- pathology of their hearing impairment. nated to all countries and are aVordably priced. x In dealing with this social issue, five Knowing, understanding and taking into strategies could be identified: improving account the cultural, linguistic, sociological, legislation on communications barriers, psychological, educational and prosthetic as- providing the necessary information, im- pects of hearing impairment is the first step in proving patient’s coping strategies, im- the delivery of quality health care for deaf peo- proving the health care setting and imple. Professionals who serve hearing impaired proving patient-physician communication. people need to be aware of what being deaf implies, and the obstacles they must overcome synonym for capacitation—that is, the need to to be able to use their knowledge to counsel, increase the decision making skills of people. It advise, and advocate for the people they work 7 can also refer to power-with, which is concerned for. But also, deaf people need to be aware and with the idea that people feel more powerful well informed of what to expect and demand when they are organised and work towards the from the health care system. In this way they same goal. In that sense, power-with promotes will be able to become sensible users of those the strengthening of organisations, social net- services and make meaningful choices in works and alliances. Lastly, empowerment can relation to how they want to live their lives. also be seen as power-inside, which is based on increasing the self esteem, self acceptance and self respect of people. , , bring Empowering the deaf Power-for power-with and power-inside about respect and acceptance of other people as The concept of empowerment is extremely complex. Empowerment models are character- equals and contribute to a notion of comple- ised by a bottom up strategy for change and a mentariety instead of one of duality and exclu- wide contextual framework.28 sion. Still, it should be bourne in mind that Empowerment primarily implies giving actions aimed at empowering deaf people need power and authority to a person. In that sense, both to take into account the risk of increasing it deals with a redistribution of resources and conflicts instead of reducing them and to make power, which brings up the question of whether sure deaf people are well aware of such risk. an increase in empowerment for one group of These three dimensions of empowerment people automatically means a decrease for are not mutually exclusive. This is the reason others. why strategies, even though being directed Within this framework, deaf people are towards fostering one of the three dimensions, regarded as being completely capable of self should never be regarded as being restrictive, representation, decision making concerning but rather as contributing to one same goal. their health and participating in health care Some of these strategies include the following: work. The notion of giving power to deaf people ENHANCING LEGISLATION ON COMMUNICATION seems clear and easy to put into eVect. BARRIERS However, the issue is not so simple and merits Both to protect deaf people’s rights and to take further analysis. Attempts made to increase the legal action when laws are infringed.29 power of people have usually resulted in a x The present impetus given to the removal of highly objectionable situation of dominance/ architectural, urban and transport barriers subordination; power is therefore seen as being should also include the removal of commu- in the hands of just a few people who wield it nication barriers in some EU countries, over other people. If applied to deafness, it Spain in particular, as a distinct target and leads to a painful hearing/deaf duality, which not as part of the other three goals. far from narrowing the gap between both situ- x The high degree of non-compliance with ations, contributes to aggravating it. Strategies laws governing the removal of barriers and directed towards empowering deaf people equal of opportunity should be monitored should not result in reversing the above and cut oV. mentioned present situation. x Legislation on the removal of barriers, too Still, power-over is not the only option often incomplete, needs to be both imple- available. To give power can also be understood mented and regulated so that it can be put as power-for, which refers to power as a into eVect shortly. Downloaded from jech.bmj.com on 28 October 2008

Empowering the deaf 43

x Legislation that is being developed in many x Developing programmes that are responsive countries to be applicable only to certain to families’ needs as empowerment of the regions within those countries should be family has numerous benefits for the deaf broadened to become national in scope. child.30 x Legislation should not only focus on trans- x Developing programmes sensitive to the cul- port, education and administration but also tural and linguistic diVerences of the hearing on health care. For instance, the recent impaired.31 regulation in some EU southern countries of x Starting rehabilitation programmes support- the presence of interpreters or people trained ive of specific demands, problems and func- in sign language in airports, bus and train tional limitations of late deafened people. stations should also extend to health care x Helping deaf patients to face and examine centres. their needs and develop strategies for coping with some of the consequences of being deaf: stress, loneliness or/and isolation.23 PROVIDING THE NECESSARY INFORMATION: One of the obstacles numerous deaf people IMPROVING THE HEALTH CARE SETTING: have to confront as part of their daily life is an The planning and design of an environment overwhelming deprivation of their right of free from communication barriers should be access to information. This is mainly because one of the goals of any health care setting. This of the fact that many of them can neither follow could be implemented by: the news on television nor, for instance, read a Investing and equipping the setting with newspaper. As a consequence, many deaf peo- x video-telephones, minicoms, faxes and the ple meet regularly in their local associations. internet. This should always be accompa- Associations of deaf people become a way of nied by a previous consultation with organi- seeking interaction with each other, accessing sations and representatives of deaf people. culture and exchanging information. In many Installing emergency systems using visual/ EU countries, particularly in the southern x luminous means. ones, providing information on health issues is Installing amplifying systems for hearing aid organised by the association and usually takes x users. the form of short and infrequent speeches Presenting visually notices and important about AIDS, pregnancy, or any other related x information on signs, panels or through the topic. It follows from this that: use of graphic symbols.32 x Associations, federations and organisations of deaf people should be contacted and IMPROVING PATIENT-PHYSICIAN profited as natural places for providing COMMUNICATION: information to deaf people. Besides, agree- A recurrent topic in scientific papers over the ments between health care providers and past few years has been the growing concern association presidents should be reached so for the doctor-deaf patient relationship.33–36 that speeches on health issues no longer The need for doctors to be aware of and depend exclusively on an association’s good- understand the problems related to communi- will and initiative, but also cover a wide and cation, low self concept and social functioning varied range of themes, being given by has been pointed out and emphasised to:37 professionals trained in dealing with deaf Deal with the initial crisis and resultant con- people. This could also lead to basic courses x sequences for parents—parental denial of in sign language for professionals, which their infants’ hearing loss,38 guilt, grief, feel- would result in a greater degree of trust and ings of impotence, aVection detachment, an improvement in doctor-patient commu- “doctor shopping”—when informing them nication. of an irreversible hearing impairment in x Television subtitling systems as well as news their child. programmes should be created or improved Respond to parents looking for advice on the (if they already exist), by making them the x best education for their children at the point rule and not the exception, incorporating of entry into school.39 sign language to programmes for those Help deaf patients and their families over- whose preferred means of communication is x come negative attitudes toward their hearing sign language or whose reading comprehen- status. sion is very poor, and most importantly Contribute to the acceptance of prosthetic showing them within hours deaf people can x help by increasing the self perception and watch them. awareness of hearing impairment,40 discuss- x The interpreters’ services should be made ing the stigma related attitudes that prevent use of, their limitations known, how they people from giving hearing aids a try, work, and how to contact them. encouraging the use of hearing aids that are aVordable and available to them, helping IMPROVING PATIENTS’ COPING STRATEGIES: them select the most appropriate aid for Impairment, disability and handicap are three their hearing loss and age. aspects of the same reality. Yet, sometimes x Reduce and dispel some of the serious actions focusing on impairment and/or disabil- misunderstandings physicians can provoke ity can result in turning it into a handicap when during a medical evaluation (underestimat- the goal pursued had been just the opposite. ing their patients’ intelligence, relying a hun- Strategies should therefore include the follow- dred per cent on lip reading, giving oversim- ing: plified explanations)41 because of ignorance Downloaded from jech.bmj.com on 28 October 2008

44 Munoz-Baell, Ruiz

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