empowering the deaf. let the deaf be deaf

8/10/2019 Empowering the deaf. Let the deaf be deaf

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Empowering the deaf. Let the deaf be deaf

Irma M Munoz-Baell, M Teresa Ruiz

AbstractDeafness is often regarded as just a oneand only phenomenon. Accordingly, deafpeople are pictured as a unified body ofpeople who share a single problem. Froma medical point of view, we find it usual towork with a classification of deafness inwhich pathologies attributable to an innerear disorder are segregated from patholo-gies attributable to an outer/middle eardisorder. Medical intervention is thusconcerned more with the origin, degree,type of loss, onset, and structural pathol-ogy of deafness than with communicativedisability and the implications there may

be for the patient (mainly dependency,denial of abnormal hearing behaviour, low

self esteem, rejection of the prosthetichelp, and the breakdown of social relation-ships). In this paper, we argue thathearing loss is a very complex phenom-enon, which has many and serious conse-quences for people and involves manyfactors and issues that should be carefullyexamined. The immediate consequence ofdeafness is a breakdown in communica-tion whereby the communicative functionneeds to be either initiated or restored. Inthat sense, empowering strategiesaimedat promoting not only a more traditionalpsychological empowerment but also acommunity oneshould primarily focuson the removal of communication barri-ers.(J Epidemiol Community Health 2000;54:4044)

Pathology/disability model versussociocultural model of deafnessOver the past few years, two opposing perspec-tives of conceptualising deafness in contempo-rary society have been reported and discussedin scientific literature.15 The first one definesdeafness as a pathological condition, while thesecond one regards deafness as a cultural iden-tifier. Consequently, both models have condi-tioned how recent research on deafness hasbeen conducted,6 and have strongly aVected

and determined the social view of deaf peopleand their education.The pathology perspective focuses on the

failure of the hearing mechanism. Deafness isdefined as a medical condition that requiressome kind of remediation, either throughcorrection or compensation. This model findsthat moderately and profoundly hearing im-paired people can be analysed and groupedtogether for study.6 Moreover, it emphasisesthe need to encourage speech and lip readingbased on the assumption that competency in aspoken language is the only means for cognitivedevelopment in the child.5 Its direct conse-

quence is, therefore, the rejection of the use ofsign language in schools.

However, an ever increasing number of deafpeople do not consider themselves to be handi-capped or disabled7 but claim to be seen andrespected as a distinct cultural group with itsown beliefs, needs, opinions, customs and lan-guage. Members of the deaf community definedeafness as a cultural rather than an audiologi-cal term. The sociocultural model recognisessignificant sociolinguistic diVerences betweenpeople who label themselves deaf and peoplewho label themselves hard of hearing, peoplewho feel proud of their belonging to the deafcommunity and those who reject it, because ingeneral they belong to separate cultural andlinguistic realities. It is therefore reasoned that

hearing impaired people need to be groupedseparately for analysis.

As we have just put forward, both perspec-tives are contradictory because they upholddiVering notions of deafness. When con-fronted, people who share one or the otherstandpoint usually end up in unsolvableconflicts, which are nothing but the result ofdiVering expectations about each others be-haviour that necessarily clash. An example ofthis can be found at present in some schools fordeaf children, in which deaf parents advocacyof the use of sign language as part of the schoolcurriculum in the education of their childrencomes into conflict with the hearing teachersanchorage in a still pretended importance ofcompetency in a spoken language as the onlylegitimate way of educating deaf children.8 9

The hearing community versus the deafcommunityTHE HEARING COMMUNITY

Historically, the dominant hearing culture hasrelegated deaf people to social categories suchas handicapped and outsider. The historyof oppression and exclusion of the deafcommunityalthough with important varia-tions depending on the countriesand theignorance and rejection of the natural and pre-

ferred means of communication of many ofthem is a well known and many timesdenounced phenomenon.

However, deaf people are disabled more bytheir transactions with the hearing world thanby the pathology of their hearing impairment.Unfortunately, the social image of deafness isstill marked nowadays in too many countriesnot only by a deeply rooted pathologicalstigma10 11 but also by negative stereotypes12

and prejudiced attitudes13 14 toward the deafthatattributable mainly to an extensive sociallack of knowledge about communicationmechanisms and how they work in conjunction

J Epidemiol Community Health2000;54:404440

Department of PublicHealth, Edificio deCiencias Sociales,Universidad de

Alicante, Apdo decorreos 99, 03080Alicante, Spain

Correspondence to:

I M Munoz-Baell.

Accepted for publication

2 July 1999


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with culturehave unfavourably influencedmedical, legal, and educational policies for thedeaf.

To a large extent, the world view of deafnesshas exerted an influence on so many issues ofconcern to deaf people that a review of thesubject emerges as vital at this point.

THE DEAF COMMUNITY

Many are the implications of being deaf, how-

ever little is known about them. Congenitaldeafness has probably been the most and long-est studied type of deafness because of the seri-ous consequences early auditory deprivationhas on the intellectual, behavioural, cognitive,psychological, and social development of thechild. Within this group, a distinction must bemade between (a) deaf children born to deafparents, who acquire sign language as a firstlanguage, (b) deaf children born to hearingparents, who ignore the existence of or rejectsign language,15 and (c) deaf children offamilies in which another member is deaf.

The consequences of congenital deafness donot diVer from those resulting from acquired

deafness in those cases in which people areborn with normal hearing and lose theirhearing in early childhood, just before theycome in contact with any spoken language.However, they do diVer from the consequencesresulting from acquired deafness when hearingloss occurs in late childhood. This is the reasonwe usually talk about preverbal (or prelinguis-tic) deafness to refer to the former andpostverbal (or postlinguistic) deafness to referto the latter.16 17

On the other hand, deafness acquired inadulthood creates problems that are diVerentfrom those of people who are born deaf or losetheir hearing in early or late childhood. Hereagain, though, we need to distinguish between

occupational deafness and elderly deafness.The hearing and the deaf communities share

a linguistic challenge. Both encounter acommunication barrier when having to dealwith each other.The diVerences then lie in howthis obstacle determines their lives and howthey perceive of it.

For early onset deafness, prompt languagedeprivation has a direct eVect on how the childacquires social knowledge, that is, if socialknowledge is naturally tied to language andsocial meaning, how can a deaf child with nolanguage construct his world? Low self esteem,childhood social isolation and parental stress18

are some of the consequences of a communica-

tion disability in childhood. Deaf people tendto have little education, low status jobs and lowincomes. Social rejection and alienation fromthe larger hearing community reinforce theirview of themselves as a cultural and linguisticminority group.19 Yet, the culturally deaf do notview themselves as handicapped or disabledbut as members of the so called deaf commu-nity. Membership in the deaf community mustbe earned, and being deaf or having a certaindegree of hearing loss is not the only criterionfor potential inclusion. A common language,shared experiences, social participation and asense of cultural identity are other recognised

criteria. What is more, belonging to the deafcommunity serves as therapy for deafpeople20 in many cases, and the importance ofusing methods of bilingual-bicultural educa-tion with deaf children rather than oralistmethods is emphasised.21

Deafness acquired in adulthood is of adiVerent nature. Communication breaks downwhen language has already been learned and isalready in use. People grow reluctant to change

or adapt their usual means of communicationand find it extremely hard to adjust to the newsituation. Changes after their hearing loss seeman insurmountable obstacle for them alone tocope with. Embarrassment, loss of confidence,anger and resentment are among the mostcommon feelings they have to deal with every-day. Noisy groups and strangers are avoidedand there is a growing preference to remain athome rather than to go out, which in manycases leads to inactivity, depression22 and isola-tion. A persistent denial23 of the new situationsprings from a view of it as illegitimate, some-thing to be ashamed of and hidden; hence, ingreat part, a dislike for or rejection of hearing

aids. Deafness in the elderly can bring aboutadditional diYculties, such as the inability toinsert the earmould, to name just one,24 as agerelated hearing loss means both an adaptationto the hearing loss and to old age.

Lastly, even though increasingly the numberof persons with hearing loss in later life is muchlarger than that of those with hearing loss inearlier life, people in the second group tend tobe better organised and active. The systematicuse of a classification similar to the one justdescribed would greatly contribute not only toobtaining exact figures on such a diVerence butalso to conducting and evaluating any course ofaction.

Health promotion and deaf peopleIt is clear, then, how heterogeneous the deafpopulation is and how this fact has made itmore diYcult to establish a set of generalmeasures to deal with the diVerent issuesfacing this community.

It is also easy to see why there are so manyassociations and organisations nowadays(formed by prelinguistic deaf people, parents ofdeaf children, cochlear implanted people, post-linguistic deaf people, and interpreters, amongothers), not to mention the ferocious argu-ments and resulting confrontations and dis-agreements they are often drawn into.

To sum up, deafness implies diversity, and

diversity in relation to hearing loss needs to beacknowledged, understood, and most impor-tantly, respected.

It is paradoxical, if not highly reproachful,that there still exists nowadays an enormousgap in many countries between the legislationand their recommendations favouring equalopportunity for hearing impaired people on theone hand (The European Parliament Resolu-tion on Sign Languages, 198825; UNO Uni-form Rules Resolution, 199326; EU CommitteeReport, 1996,27 just to mention a few), and thesigns of incipient attention paid to deafness inmany countries on the other.

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European Union initiatives at both nationaland trans-national levels are making a signifi-cant contribution to the empowerment of deafpeople. However, they also involve certain risksthat need to be pointed out. Two of theseprojects shall be mentioned to illustrate suchrisks. In this respect, for instance, the EuropeanSocial Fund HORIZON Chapter of theEmployment Initiative should ensure that thedistribution of projects to deaf organisations

with diVerent goals and levels of deaf awarenessis carried out on an equal basis. In the sameline, the EU Technology Initiative for Disabledand Elderly People should ensure that thedevices being developed at present are dissemi-nated to all countries and are aVordably priced.

Knowing, understanding and taking intoaccount the cultural, linguistic, sociological,psychological, educational and prosthetic as-pects of hearing impairment is the first step inthe delivery of quality health care for deaf peo-ple. Professionals who serve hearing impairedpeople need to be aware of what being deafimplies, and the obstacles they must overcometo be able to use their knowledge to counsel,

advise, and advocate for the people they workfor.7 But also, deaf people need to be aware andwell informed of what to expect and demandfrom the health care system. In this way theywill be able to become sensible users of thoseservices and make meaningful choices inrelation to how they want to live their lives.

Empowering the deafThe concept of empowerment is extremelycomplex. Empowerment models are character-ised by a bottom up strategy for change and awide contextual framework.28

Empowerment primarily implies giving

power and authority to a person. In that sense,it deals with a redistribution of resources andpower, which brings up the question of whetheran increase in empowerment for one group ofpeople automatically means a decrease forothers.

Within this framework, deaf people areregarded as being completely capable of selfrepresentation, decision making concerningtheir health and participating in health carework.

The notion of giving power to deaf peopleseems clear and easy to put into eVect.However, the issue is not so simple and meritsfurther analysis. Attempts made to increase the

power of people have usually resulted in ahighly objectionable situation of dominance/subordination; power is therefore seen as beingin the hands of just a few people who wield itover other people. If applied to deafness, itleads to a painful hearing/deaf duality, whichfar from narrowing the gap between both situ-ations, contributes to aggravating it. Strategiesdirected towards empowering deaf peopleshould not result in reversing the abovementioned present situation.

Still, power-over is not the only optionavailable. To give power can also be understoodas power-for, which refers to power as a

KEY POINTS

x The medical point of view in the classifi-cation of deafness does not fit with theneeds of health promotion strategies in sofar as members of the deaf communitydefine deafness as a cultural rather thanaudiological problem.

x Pathological stigma, negative stereotypesand prejudiced attitudes towards the deaf

have unfavourably influenced medical,legal and educational policies. Deaf peo-ple are disabled more by their transac-tions with the hearing world than by thepathology of their hearing impairment.

x In dealing with this social issue, fivestrategies could be identified: improvinglegislation on communications barriers,providing the necessary information, im-proving patients coping strategies, im-proving the health care setting and im-proving patient-physician communication.

synonym for capacitationthat is, the need to

increase the decision making skills of people. It

can also refer to power-with, which is concernedwith the idea that people feel more powerful

when they are organised and work towards the

same goal. In that sense, power-with promotes

the strengthening of organisations, social net-

works and alliances. Lastly, empowerment can

also be seen as power-inside, which is based on

increasing the self esteem, self acceptance and

self respect of people.

Power-for, power-with, and power-inside bring

about respect and acceptance of other people as

equals and contribute to a notion of comple-

mentariety instead of one of duality and exclu-sion. Still, it should be bourne in mind thatactions aimed at empowering deaf people need

both to take into account the risk of increasingconflicts instead of reducing them and to makesure deaf people are well aware of such risk.

These three dimensions of empowerment

are not mutually exclusive. This is the reasonwhy strategies, even though being directedtowards fostering one of the three dimensions,

should never be regarded as being restrictive,but rather as contributing to one same goal.Some of these strategies include the following:

ENHANCING LEGISLATION ON COMMUNICATION

BARRIERS

Both to protect deaf peoples rights and to take

legal action when laws are infringed.29

x The present impetus given to the removal ofarchitectural, urban and transport barriers

should also include the removal of commu-nication barriers in some EU countries,Spain in particular, as a distinct target and

not as part of the other three goals.x The high degree of non-compliance with

laws governing the removal of barriers and

equal of opportunity should be monitoredand cut oV.

x Legislation on the removal of barriers, too

often incomplete, needs to be both imple-mented and regulated so that it can be putinto eVect shortly.

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x Legislation that is being developed in manycountries to be applicable only to certainregions within those countries should bebroadened to become national in scope.

x Legislation should not only focus on trans-port, education and administration but alsoon health care. For instance, the recentregulation in some EU southern countries ofthe presence of interpreters or people trainedin sign language in airports, bus and train

stations should also extend to health carecentres.

PROVIDING THE NECESSARY INFORMATION:One of the obstacles numerous deaf peoplehave to confront as part of their daily life is anoverwhelming deprivation of their right ofaccess to information. This is mainly becauseof the fact that many of them can neither followthe news on television nor, for instance, read anewspaper. As a consequence, many deaf peo-ple meet regularly in their local associations.Associations of deaf people become a way ofseeking interaction with each other, accessingculture and exchanging information. In many

EU countries, particularly in the southernones, providing information on health issues isorganised by the association and usually takesthe form of short and infrequent speechesabout AIDS, pregnancy, or any other relatedtopic. It follows from this that:x Associations, federations and organisations

of deaf people should be contacted andprofited as natural places for providinginformation to deaf people. Besides, agree-ments between health care providers andassociation presidents should be reached sothat speeches on health issues no longerdepend exclusively on an associations good-will and initiative, but also cover a wide and

varied range of themes, being given byprofessionals trained in dealing with deafpeople. This could also lead to basic coursesin sign language for professionals, whichwould result in a greater degree of trust andan improvement in doctor-patient commu-nication.

x Television subtitling systems as well as newsprogrammes should be created or improved(if they already exist), by making them therule and not the exception, incorporatingsign language to programmes for thosewhose preferred means of communication issign language or whose reading comprehen-sion is very poor, and most importantlyshowing them within hours deaf people can

watch them.x The interpreters services should be made

use of, their limitations known, how theywork, and how to contact them.

IMPROVING PATIENTS COPING STRATEGIES:Impairment, disability and handicap are threeaspects of the same reality. Yet, sometimesactions focusing on impairment and/or disabil-ity can result in turning it into a handicap whenthe goal pursued had been just the opposite.Strategies should therefore include the follow-ing:

x Developing programmes that are responsiveto families needs as empowerment of thefamily has numerous benefits for the deafchild.30

x Developing programmes sensitive to the cul-tural and linguistic diVerences of the hearingimpaired.31

x Starting rehabilitation programmes support-ive of specific demands, problems and func-tional limitations of late deafened people.

x Helping deaf patients to face and examinetheir needs and develop strategies for copingwith some of the consequences of being deaf:stress, loneliness or/and isolation.23

IMPROVING THE HEALTH CARE SETTING:The planning and design of an environmentfree from communication barriers should beone of the goals of any health care setting. Thiscould be implemented by:x Investing and equipping the setting with

video-telephones, minicoms, faxes and theinternet. This should always be accompa-nied by a previous consultation with organi-sations and representatives of deaf people.

x

Installing emergency systems using visual/luminous means.x Installing amplifying systems for hearing aid

users.x Presenting visually notices and important

information on signs, panels or through theuse of graphic symbols.32

IMPROVING PATIENT-PHYSICIANCOMMUNICATION:A recurrent topic in scientific papers over thepast few years has been the growing concernfor the doctor-deaf patient relationship.3336

The need for doctors to be aware of andunderstand the problems related to communi-cation, low self concept and social functioning

has been pointed out and emphasised to:37

x Deal with the initial crisis and resultant con-sequences for parentsparental denial oftheir infants hearing loss,38 guilt, grief, feel-ings of impotence, aVection detachment,doctor shoppingwhen informing themof an irreversible hearing impairment intheir child.

x Respond to parents looking for advice on thebest education for their children at the pointof entry into school.39

x Help deaf patients and their families over-come negative attitudes toward their hearingstatus.

x Contribute to the acceptance of prosthetic

help by increasing the self perception andawareness of hearing impairment,40 discuss-ing the stigma related attitudes that preventpeople from giving hearing aids a try,encouraging the use of hearing aids that areaVordable and available to them, helpingthem select the most appropriate aid fortheir hearing loss and age.

x Reduce and dispel some of the seriousmisunderstandings physicians can provokeduring a medical evaluation (underestimat-ing their patients intelligence, relying a hun-dred per cent on lip reading, giving oversim-plified explanations)41 because of ignorance

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of the specific communication problems,needs and rights of their deaf patients (rightto be assisted by an interpreter and to usesign language).To sum up the matter, hearing loss is a social

issue rather than just a pathology, hence thepressing need to remove the stigma of deafnessas a pathology. Communication breaks downbecause language fails and language, as we allknow, is the essential tool of human socialisa-

tion. Understanding the mechanisms that gov-ern linguistic behaviour and production, howlanguage and culture are part of the same real-ity, what deaf peoples opinions, needs andknowledge are,42 and what public attitudes,ideas, beliefs and assumptions toward deafnessand hearing are, is the essential starting pointfor any action in health care. Medical profes-sionals have the responsibility of reviewing andquestioning the traditional medical model ondeafness that emphasises pathology not only intheir diagnosis and treatment of deaf patientsbut also in their definitions of deaf peoplesneeds. Furthermore, because of its strong cul-tural bearing, medical research on deafness

should no longer disregard research findings onnon-medical areas when planning their re-search agenda and study designs.

Conflicts of interest: none.

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empowering the deaf. let the deaf be deaf

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