Exploring                                   the sexual                                   vulnerability                    ...
ForewordUnraveling deaf sexual vulnerabilityT    his study, enabled by a two-year fellowship by the Macarthur Population P...
Project Signpost           T    here has never been a study, either in India or abroad, that looked at the deaf           ...
Deaf children are among India’s most vulnerable to sexual abuse —           and yet their vulnerability is the least ackno...
There were 6.5 million deaf Indians in 1991. This is probably the world’s       largest deaf community, but a small fracti...
193,607 deaf Indians might already be HIV positive. This may               be the world’s largest infected deaf population...
Deaf persons’ ignorance about issues that affect               their health is chronic and lifelong, because their alienat...
By the time the deaf child enters adolescence, her parents’ ability to  communicate with her is much reduced, specially ab...
Seven females who spoke about childhood sexual abuse, named the            offenders are father, uncle, brother, servant a...
Low levels of education and communication rob India’s deaf of the   conceptual frameworks needed to discuss and explore se...
Objectives          Project Signpost’s main objectives were    marriage partners, preference          to gain a better und...
3. Questionnaire                           a questionnaire to collect data from the  Brief descriptions of each of these  ...
The differences in knowledge and emotional maturity between a       deaf adolescent and a deaf adult would be nearly negli...
DESCRIPTION OF SAMPLE BY EDUCATION              DISTRIBUTION OF SAMPLEMost deaf people appear to receive educa-       ACCO...
Groups of the deaf in Chennai that did not have a good interpreter found         it nearly impossible to fill out the sexu...
Findings                                             through much agonising about the    1. FAMILY LIFE                   ...
When a family does not resolve its initial reaction to its deaf child, it will               continue to exert a retarding...
An ambivalence, or love-hate relationship, colours and                   dominates all deaf-hearing relationships.visually...
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
Exploring the Sexual Vulnerability of Urban Deaf Indians
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Exploring the Sexual Vulnerability of Urban Deaf Indians

  1. 1. Exploring the sexual vulnerability of urban deaf Indians Shilpa Patil C Y Gopinath 2000E N A B L E D B Y T H E M AC A R T H U R P O P U L AT I O N P R O G R A M F E L LO W S H I P
  2. 2. ForewordUnraveling deaf sexual vulnerabilityT his study, enabled by a two-year fellowship by the Macarthur Population Programme Fellowship, is possi- bly the first one conducted in India which attempts to explore the sexual behaviour and vulnerability of thedeaf community. We would like to note at the outset that there are formidable difficulties to be faced in arriv- 1ing at a research sample group that is truly representative of the diversity of India’s deaf. The project’s sever-est limitation was that it could only work with groups that were accessible through clubs, hostels, schools orassociations. Such groups represent a decimal minority of India’s deaf people. There is also a clear danger of generalising on behalf of the national community of deaf persons based onour limited study sample. We are at pains to underscore the fact that we worked with urban deaf youth, andhave made reasonable inferences about rural deaf youth through our findings. We are aware that whatevervulnerabilities have been revealed by our study sample, they are only likely to worse with the larger commu-nity of scattered and isolated deaf Indians who will go through their lives without recourse to any facility thatcould improve their conditions, self-respect or survival options. Most of them will probably subsist as burdensupon the families into which they were born. Though we have reason to believe that they may receive a loveand acceptance of sorts, harsh economics will dictate that their needs will be lowest on the priorities. The study unravels the issue of sexual vulnerability by examining the familial, educational and social con-texts in which the attitudes, self-perceptions and survival options of a deaf Indian evolve. This takes us on ajourney that starts with the cradle, and allows us to understand how the treatment and behaviour of hearingsociety towards the deaf person finally bring about the hardening of certain key attitudes, and create certainglaring gaps in knowledge, which together form a basis for a lifelong vulnerability. We would liked to have had more time than two years, and more venues for research than merely the threemetropolitan centres of Mumbai, Delhi and Chennai. However, the project’s imperatives precluded a widerstudy, and we hope that it will be taken up in the future, as there is clear need for an even deeper understandingof the issues raised here. Anecdotal evidence From the study itself, and also the interviews and conversations we had during the course of the project, webelieve that the deaf in India are uniquely vulnerable and at risk in the age of HIV/AIDS. To establish thedimensions of deaf sexual abuse and vulnerability in this report, we have drawn on anecdotal evidence thatcame from our research as well as the interviews and conversations around it. This deviation from the strictprotocol of research is our response to the knowledge that such studies are not common in India, and that thenext such may not happen for many years ahead. We are keen that this study be convincing enough about deafsexual vulnerability to provoke action. For that reason, we have harvested insights from the entire project peri-od of two years rather than stick only to the hours and days of our focus group sessions, key informant inter-views and questionnaires. Not hearing impaired. Deaf. Throughout the report, we have followed international practice and used the single word ‘deaf’ to refer tothe range of hearing impairment from absolute deafness to varying degrees of hearing impairment. This deci-sion is specially significant in India where there is a poor census of people with hearing disability to start with.In this context, it is more important to use a term that reflects the marginalised status of this community ratherthan the biological degree of their handicap. The word ‘deaf’ can better focus attention on society’s attitudestowards this condition. When referring to a deaf person in the singular tense, we have arbitrarily used either ‘she’ or ‘he’, to side-step tricky issues of gender. However, in sections where a specific gender is more relevant, such as sexualabuse where the female is oftener the victim, we have used that gender. C Y Gopinath Shilpa Patil March 9, 2000 rehabit@vsnl.com
  3. 3. Project Signpost T here has never been a study, either in India or abroad, that looked at the deaf community’s vulnerability in the age of HIV and AIDS. Because the deaf are defined in terms of their primary challenge, their hearing impairment, the atten-2 tion has invariably been pulled towards language, technologies of hearing, and education. But not being able to hear has profound and disturbing implications for the quality and course of the relationships into which a deaf person falls. The deaf person is an unguided target, prone to drifting into situations of high risk armed neither with awareness nor with wisdom that could save his or her life. Project Signpost evolved as a first step towards assessing the risks a deaf Indian youth faces within relationships. The project evolved organically, through theatre workshops which led to discussions, which became finally a formal research pro- posal that was awarded a 2-year fellowship by the Macarthur Population Programme in July 1997. The objective of the study was to evolve an innovative non-verbal curriculum that could give deaf youth a better understanding of their health risks within relationships, and the choices before them. It has been a daunting and difficult study, beset by numerous limitations and hurdles along the way. Without any guiding precedent either in India or abroad, Project Signpost had to cut its own path through the woods on many occasions. The largest constraint was the absence of a single unifying sign language, which influ- enced both how we conducted out workshops, as well as the methods in which we chose to clarify biological and technical concepts. Midway through the project, we had to make a radical course correction and redefine the ending of the project as peer education. This arose from our growing awareness that the curriculum would succeed only when it empowered the deaf to help themselves rather than leave the instruction in the hands of the hearing, with whom there is always a subtle tension. Apart from the Macarthur Foundation’s India office, which has been a remark- able enabler and support to our entire project, we have to acknowledge Tasneem Raja, who worked with the project for its duration as Project Coordinator, and brought her skills from her earlier work. The contents of this report owe a great deal to her efforts. We also owe a deep debt of thanks to Arun Rao and Anil Rao, the two hearing individuals who have dedicated their lives to working with deaf youth, and did much to support our work by giving their time, attention and inputs. The sexual health curriculum belongs to them and their deaf friends to take forward. It will be difficulto to list all those others who gave of their time, insights and experience, especially our innumerable deaf friends who were generous with us, but of them we specialy mention C. Rajeshwari, co-founder of DAWN in Chennai, and Sangeeta Gala, of the Bombay Foundation of Deaf Women, who was our sign language teacher in the early days, and later our via media into deaf communities. Finally, we mention that this report is a first step, and we look forward to com- ments, criticism, insights, and observations — as well as consolidation and further work into the sexual health issues of the Indian deaf community, particularly in the area of sexual abuse and HIV/AIDS. Shilpa Patil C Y Gopinath rehabit@vsnl.com
  4. 4. Deaf children are among India’s most vulnerable to sexual abuse — and yet their vulnerability is the least acknowledged.M urari, a 10-year-old boy living in Bombay, suffered from theWaardenburg Syndrome, a condition institute authorities gave up, unable to understand the girl’s signs and ges- tures. She had developed some commu-marked by profound deafness and some nication system of her own. 3mental retardation. For some months,he had been making steady and visibleprogress with Nilam Patel, a teacher ofdeaf youth. Under her individual I n a slum near in north Bombay, 30- year-old Niki, deaf since birth, died of AIDS in December 1998. His wife Mona,tuition, his attention span and commu- also deaf, had died in March, also of Murari’s parents left onnication skills had improved consider- AIDS. Their child, born HIV positive, vacation; the boy wasably. He had picked up a vocabulary of had died at age one month, soon after driven by a chauffeur to his daily classes. Todaynearly 7,000 Hindi words. Christmas, 1997. Niki’s sister Mamta Nilam believes that, in One day, Murari’s parents left on was his caregiver during his last days. his parents’ absence, thevacation; the boy was driven by a chauf- She was the one who struggled to pro- boy was sexuallyfeur to his daily classes. Today Nilam tect his identity and dignity in the slum abused by the chauffeur.believes that in his parents’ absence, where they lived. Even finding a nursethe boy was sexually abused by the willing to administers a glucose drip tochauffeur. She began to notice certain strengthen him for a hospital visitdisturbing changes in his behaviour. proved a near impossibility. Finally, anHis concentration deteriorated. He’d aunt reluctantly did the job. At the hos-keep glancing over his shoulder, as pital, a ward boy offered to ‘extermi-though someone else were in the room. nate’ Niki for a mere Rs 50. Through allA battery of neuro-physiological tests, the indignity, Mamta says, “Niki simply After a hospital check-including Magnetic Resonance Imaging refused to believe that there was any up confirmed sexualand CATSCAN, showed nothing physi- such things as AIDS right up to the time assault, the grandmothercally wrong with him. he died of it.” filed a police complaint. Meanwhile, his performance went These three stories highlight impor- The problem, of course,from bad to worse: Murari began to for- tant aspects of the sexual predicament was that only Aparnaget the vocabulary he’d learned. At of the deaf child in India. They are could describe thehome, he displayed extremely violent among the Indian children most vul- incident and provide anybehaviour. Soon, he had regressed nerable to sexual abuse — and yet their clues about the rapist —totally, and forgotten almost everything vulnerability is the least acknowledged. and she was deaf.he’d learnt. Disheartened, his parents They are one of this country’s most dis-removed him to a deaf school. jointed communities, divided by lan- When Nilam shared her suspicions guage, isolated by their lack of sharedabout the chauffeur with the boy’s par- identity, and left rudderless through theents, they dismissed the idea as absence of a national level lobby thatunthinkable. could represent their interests. And finally, in this age of HIV/AIDS and At the hospital, a wardT he second story is from a news item in India in June 1998. It reportedthe rape of Aparna, a 7–year-old deaf infection through uninformed contact, the deaf are deeply endangered by their ignorance and low levels of awareness, boy offered to ‘exterminate’ Niki for agirl, by a neighbour. Aparna is an aban- and also by their friendly, affection- mere Rs50. Through alldoned child of divorced parents, and seeking temperaments that makes the indignity, Mamta says, “Niki simplystays with her grandmother. After a them prone to high-risk behaviour with refused to believe thathospital check-up confirmed sexual little forethought or attention to the there was any suchassault, the grandmother filed a police consequences. Already marginalised by things as AIDS right upcomplaint. The problem, of course, was their deafness, they are doubly discrim- to the time he died of it.”that only Aparna could describe the inated against when they becomeincident and provide any clues about infected by HIV, the AIDS virus.the rapist — and she was deaf. Who talks about sexual and repro- Aparna was taken to a national insti- ductive health matters to deaf Indianstute for the hearing handicapped. The in a language they can understand?police hoped that they, using signs to How much do they know about mattersspeak with Aparna, could help them that affect their well being and survival,nail the rapist. But after a few days, the of behaviour that would place them-
  5. 5. There were 6.5 million deaf Indians in 1991. This is probably the world’s largest deaf community, but a small fraction of India’s population. selves and their loved ones at risk? Being deaf in India What sort of curriculum could address The most intimidating thing about the needs of the deaf using a methodol- being deaf in India is probably India4 ogy they could access? These were our itself. The population is numbingly questions. Our objective was to evolve a large — 98 million people and growing. non-verbal sexual health curriculum The country is divided into 32 states for deaf Indian youth. and six union territories, each with its Our research into the awareness lev- own government — and culture els of the deaf alone took the better part As if this were not bad enough, each of 24 months, and was beset with diffi- state has a distinct language with its culties. It is not easy to apply estab- own script — and unique culture, histo- lished research methods to a communi- ry, traditions and sense of identity. It is ty whose first obstacle is their unique sometimes said that an Indian is an mode of communicating and under- Indian only when he is out of India. The standing. Our study was conducted in national language, spoken over most of collaboration with six groups of the north India, is Hindi. In addition, there deaf in New Delhi, Mumbai and are 42 languages spoken by over 1 mil- Chennai (see Annexure 3). While they lion people, as well as 325 documented took part in workshops consisting of dialects. Most school-going Indians games, role plays and theatre exercises, learn English, and it functions as a sort we observed, and learnt much from of second language. their reactions. The last Indian survey of handicaps In important areas of Separately, we convened focus was conducted in the 47th round of the sexual health, the deaf groups of the deaf and explored their National Sample Survey in 1991 (see person’s knowledge has large gaps. You can sexual experiences, beliefs and prac- Annexure 1). It covered all Indian states understand it from the tices by playing the Figureheads Game, and union territories, and encompassed silences, the empty which we devised specially for Project 4,373 villages and towns, representing sections of Signpost. Meanwhile, we conducted 39,271 rural families and 17,489 urban questionnaires, the flood Key Informant interviews with nearly families. From this survey, there were of child-like questions 30 people, both deaf and hearing, who estimated to be 2,573,000 rural deaf and wonderment that could share their insights from years of and 669,000 urban deaf in 1991. In addi- comes once they realise living or working with the deaf in India tion, there are an estimated 3,333,899 that they may ask (see Annexure 4). children between 0 and 4 years of age whatever they want — The findings of that research have with possible hearing disability. This and receive answers. led to this report. This is also the place gives 6.5 million deaf Indians in 1991. to say that in important areas of sexual Although this is probably the world’s health, the deaf person’s knowledge largest deaf community, it is a small has large gaps. You can understand it decimal fraction of India’s population. from the silences, the empty sections of Rural India has more deaf persons questionnaires, the flood of child-like than urban, for males as well as questions and wonderment that comes females. Between the two sexes the once they realise that they may ask prevalence of hearing impairment is whatever they want — and receive higher in males (498 per 100,000) than answers. Our attempts to enumerate in females (435 per 100,000) in rural ignorance or misconceptions, or to sta- India. In urban India it is higher in tistically tabulate it have yielded only females (355 per 100,000) than males meagre additions to the understanding (325 per 100,000). we received from our games, interac- Now consider the dilemma of tions and discussions with the deaf. Shahnaz, a deaf girl born into this We now suspect that we are looking chaotic country. Studying in the Oral at the tip of a frighteningly large ice- School for Deaf Children, in Calcutta, berg. Had it been some other country, Shahnaz comes from a large, low- with not so many people, or a different income family, and has six siblings. kind of deaf community, sharing a lan- Though at her home, the spoken lan- guage or a sense of identity, the prob- guage is Hindi, people around her in lem might have been less daunting. Calcutta speak Bengali and English as
  6. 6. 193,607 deaf Indians might already be HIV positive. This may be the world’s largest infected deaf populationwell. Which of the three should she be eases, particularly HIV and AIDS.taught to lip-read? How many deaf Indians are we talk- There are two oral schools for the ing about? Project Signpost did somedeaf in Calcutta, one teaching Bengali simple arithmetic — the National AIDS 5and the other English. Shahnaz was Control Organisation’s 1997 estimate isenrolled in the latter — her parents that 22.10 Indians per 1,000 surveyedthought English would better her pros- are HIV positive. Although this is apects. As a result, today, Shahnaz can small fraction of India’s population, inlip-read and understand English well absolute terms it represents a frighten-enough. However, because the lan- ingly large number. India is widelyguage at home is Hindi, which she can- regarded as being at the hub of thenot lip-read, school has effectively iso- Asian AIDS epidemic.lated her from her family. Ironically, the Evidence from earlier studies sug-only place where she feels at home is gests that a handicapped person’s sexu-school. Here she has friends with whom al experience is not likely to be signifi-she can discuss just about anything she cantly different from others — that is,pleases. he or she will not be sexually less, or The National Sample There is one catch — no matter more, active. We therefore assumed Survey Organisationwhich school she attends, Shahnaz will the same seropositivity rate for India’s classified a person asbe strongly discouraged from using deaf as for hearing. According to this, having hearing disabilitysign language. No surprises here — 193,607 deaf Indians might already be if “he/she could not hearthere is anyway no standardised Indian HIV positive. at all or could only hearSign Language that she could have This may not only be the largest HIV loud sounds or couldbeen taught. Of course, whether the positive deaf population in the world only hear shouted wordsteacher approves or not, deaf students but also the one least likely to receive or could hear only whendevelop their own local dialect of ges- life support resources, information, the speaker was sittingtures and signs with a working vocabu- education, and communication. in front of them, orlary, so that they can communicate with would usually ask to repeat the wordseach other. Characteristics of spoken, or would like to Imagine what might happen ifShahnaz were to visit some other part the Indian deaf see the face of the speaker.”of India, say, Kerala in the extreme 1.1 Population size Deafness was notsouth. To start with, she probably would included in the Indian censuses till thenot meet any deaf people there except National Sample Survey Organisation’sby chance, because the deaf in India are 36th round in 1981, the Internationalnot very well organised. There is no Year of Disabled Persons. India’s sprawlIndian association of the deaf that truly and vast population necessitates a largerepresents the interests of all Indian census-taking task force. Typical diffi-deaf people. Should Shahnaz meet a culties related to ways of training thedeaf Keralite, she would be able to census-takers, who are predominantlymake only a limited, superficial contact. non-medical, to accurately identify deaf Shahnaz represents a minority of people. The second count was carriedIndian deaf people who are fortunate out in the 47th round of the Nationalenough to attend school. Most deaf Sample Survey in 1991. In both surveys,Indians, living in rural rather than a person was classified as having hear-urban India, will not have that privi- ing disability if “he/she could not hearlege. They will probably not attend at all or could only hear loud sounds orschool. Those that do may be in hearing could only hear shouted words or couldschools, with teachers who are at their hear only when the speaker was sittingwits’ end about how to deal with a deaf in front of them, or would usually ask tochild. Many deaf children will grow up repeat the words spoken, or would likewithout ever forming a deep friendship to see the face of the speaker”.with another deaf person. 1.2 Low literacy The education of The same factors that isolate the the deaf in India falls under theIndian deaf also make them a group at Ministry of Social Justice andhigh risk for sexually transmitted dis- Empowerment, not Education. In other
  7. 7. Deaf persons’ ignorance about issues that affect their health is chronic and lifelong, because their alienation from the hearing world is chronic and lifelong. words, the education of the deaf is edge and awareness, especially in regarded more as a welfare activity issues that affect their well-being and with an element of benevolence and survival, even though their superficial6 charity attached to it. Not surprisingly, it information levels may vary. Their is poorly funded, and administered ignorance is chronic and lifelong, leniently, so that inadequate resources because their alienation from the hear- are inefficiently deployed. ing world is chronic and lifelong. There are 478 schools for the deaf, with a capacity of approximately 33,000 1.4 No developed, universally accept- students. This excludes the vast major- ed sign language The Indian deaf per- ity of India’s estimated 1,443,431 deaf son faces unique communication prob- children and youth between ages 5 and lems caused by two factors: the absence 14 years. A certain number of them of a formal, nationally accepted Indian attend hearing schools, but these tend Sign Language; and India’s own diver- to belong to better off, urban, middle sity of 42 major languages and 325 and upper class families. It is reason- dialects. Deaf schools, which will dis- able to assume a preponderant low seminate lip-reading and oral skills level of literacy among India’s deaf, either in English or in the dominant specially youth. regional language, restrict the child’s expression to that specific language. 1.3 Poor access to information For lip-reading to be successful socially, Communicating to society around in an environment where two to three A deaf person of 16 will them, and receiving communication languages may be concurrently pres- not have significantly from society both constitute formidable ent, requires enunciation on the part of different reactions or hurdles for the Indian deaf person. The the speakers and alertness on the part knowledge than a deaf absence of an Indian Sign Language of the deaf person, to discern which person of 40. Unlike a also poses unique difficulties when language is being used. This combina- hearing individual, evolving a curriculum on sexual health tion of factors constitutes a nearly insu- whose knowledge and and HIV/AIDS, an area that has several perable barrier. personality develop throughout life, a deaf abstract concepts such as risk and vul- Although there have been several individual represents a nerability, technical terms like virus attempts to compile an Indian Sign tragic stasis, which is and immunodeficiency — as well as Language, the efforts have not yet led to the result of communi- controversial moral issues. a single language of nationally codified cation starvation. In general, though, it is possible to and accepted signs with a sufficiently say that a rural deaf Indian from a low- large vocabulary to be useful. Instead, income household will probably face there seem to be ‘dialects’ of gestures, proportionately greater difficulties in which reflect local peculiarities of cul- communication than one in an urban ture and experience. When two deaf setting coming from a middle-income people from different states of India or high-income household. These dif- meet, there will usually be a short peri- ferences in the communication envi- od of negotiation to establish a mutual ronment are, however, negligible. In lexicon. After that, communication is absolute terms, it means a deaf person relatively smooth, as long as abstract of 16 will not have significantly differ- concepts and technical subjects are not ent reactions or knowledge than a deaf broached. person of 40. Unlike a hearing individ- On top of this, deaf schools generally ual, whose knowledge and personality discourage signing, pushing instead for develop throughout life, a deaf individ- oral expression. The result is a half- ual represents a tragic stasis which is formed communication skill, and a the result of communication starvation. great degree of alienation. When conducting Knowledge/Att- itude/Belief/Practice (KABP) studies on 1.5 Absence of sex education sexual health issues, this anomaly ren- Currently, Indian materials on sexual ders demographic divisions largely health are not only poorly designed, but meaningless. The Indian deaf, by and created with literate, hearing people in large, uniformly lack depth of knowl- mind. They require a degree of verbal
  8. 8. By the time the deaf child enters adolescence, her parents’ ability to communicate with her is much reduced, specially about sexual health.literacy, as well as comfort with graph- vast majority of Indian deaf persons areic conventions such as perspective and not members of even such clubs.magnification. This excludes the great Project Signpost points to the bleak pos-majority of deaf Indians. sibility of tens of thousands of deaf 7 In general, deaf schools do not Indians who may never form a mean-extend beyond 7th grade. Sex education ingful friendship with another deafis not a part of the curriculum at this Indian through their lives.level. When deaf children are integrat- This fragmentation or lack of identi-ed into ‘hearing’ schools which may ty has led to an embarrassing alienationhave sex education as part of the cur- of the Indian deaf community from thericulum, the deaf child cannot compre- international deaf community. Thehend the information because of its Indian deaf have not been representedlargely verbal representation. at the World Deaf Congresses, conduct- By the time the deaf child enters ado- ed every four years. For example, at thelescence, her parents’ ability to com- last World Deaf Congress held inmunicate with her is substantially Brisbane in 1999, all the Indian dele-reduced, specially in areas that abound gates were hearing. They included awith abstractions such as sexual health. Member of Parliament, who hadAt schools, many teachers are ill at ease announced himself as Chairperson ofdealing with sexuality as a subject, and the Delhi group called the All Indiadiscussions tend to be limited and Federation of the Deaf. He treated the At the World Deafinhibited even with hearing students, conference as a junket for himself and Congress in Brisbane inlet alone deaf. his wife, and made only a brief token 1999, all the Indian There also do not exist the commu- appearance on the morning of the first delegates were hearing.nication methodologies that might day of the conference. The second del- They included a Memberenable a hearing researcher to work egate was the head of the Malwa Deaf of Parliament, whoempathetically with a deaf group to Association, a committed hearing per- claimed to be theexplore their dilemmas, questions and son who dedicated his life to working Chairperson of the All India Federation of theanxieties. Traditional research tech- with the deaf when he lost his deaf Deaf. He made a briefniques tend to be linear, verbal and older brother in a train accident. The token appearance on thestructured, and usually alienate most third person was C Y Gopinath, who morning of the first daydeaf Indians. As tools to explore a deaf had been invited to present a paper on of the conference andperson’s intimate and personal sexual the Figureheads game used by Project then disappeared withknowledge and experience, they are Signpost. his wife in tow,not of much help. presumably for a 1.7 Low level of social and interper- vacation.1.6 Lack of national identity The sonal skills Within the families intoIndian deaf suffer from a lack of nation- which they are born, deaf personsal identity. Neither is there a genuinely never seem to evolve either at the samerepresentative national body — such as pace as their hearing siblings andthe Indian blind have in the National friends, or to the same level. Their par-Association of the Blind — nor are there ents’ time, energy and money is drainedactivists, either deaf or hearing, capa- away by the complex and subtle needsble, informed and influential enough to of bringing up a deaf child, a labour forlobby on deaf issues in the corridors of which most parents are not naturallypower. Urban centres usually have equipped. In addition, communityassociations and clubs of the deaf, and resources do not exist that can preparethose deaf people who gain member- parents with advice and resources thatship in these build up a loose sense of could help them in their tasks.community with other deaf persons. The result for the deaf child is aThose who attend deaf schools also childhood in which parents overcom-build up a local sense of identity based pensate by being lenient and toleranton education shared with other deaf once they get over the shock of havingpeople (though this may not be true of a handicapped child — and then, withdeaf children sent to hearing schools). the first tantrums and assertions of ado- However, it is more likely that the lescence, turning over-strict and
  9. 9. Seven females who spoke about childhood sexual abuse, named the offenders are father, uncle, brother, servant and chauffeur. authoritarian. The deaf child is baffled tices, and dealing with illness. In a and hurt. Why has everything changed questionnaire-based survey of the deaf so suddenly? In this difficult environ- that we conducted, deaf men and8 ment, the deaf child grows up with an women under 30 believed that it was all ambivalence towards hearing people, right to have sex with one’s brother, sis- torn between constantly needing their ter, uncle, domestic servant, and chauf- support in even the most mundane of feur. Seven females who spoke about daily matters and resenting their con- childhood sexual abuse, named the trol and power over them. offenders are father, uncle, brother, A deaf Indian grows up with severe servant and chauffeur. lacunae in his or her ability to interact socially. The concept of concentric cir- 1.10 Insufficient employment oppor- cles of relationships, from inner family tunities Low education, low levels of to relatives to friends to colleagues is vocational skills, and poor presentation difficult for a deaf person. Within the skills sharply reduce the employment family, the child may instinctively sense options of a deaf person in India. The parental and sibling bonds, but has dif- disability quota mandated by the ficulty in distinguishing between rela- Ministry of Social Justice and Empow- tives and non-family outsiders, perceiv- erment results in a certain number of ing them more as “frequent visitors” or deaf people being ‘dumped’ into non- The concept of “infrequent visitors”. important jobs where their ability to concentric circles of ‘interfere’ with organisational working relationships, from inner 1.8 Alienation from hearing people A is nearly zero. Needless to say, none of family to relatives to deaf person continuously feels misun- these leads to a future where choice, friends to colleagues derstood by the hearing people she or dignity of labour, feelings of self-worth, seems difficult for a deaf he depends on, and believes that deep self-respect and confidence get a person. Within the down, only a deaf person can really chance to develop. From the point of family, the child may keep the best interests of the deaf in view of sexual health, there are often instinctively sense mind. From ‘hearies’, a deaf person situations where sex is equated with parental and sibling bonds, but has difficulty suspects charity, patronisation, poor employment, and commercial sex seen in distinguishing understanding, and worst of all, as a viable vocation, especially in a between relatives and exploitativeness. This feeling is borne home where the deaf man is out of job, non-family outsiders, out by the immediate family which and his deaf wife is unskilled in any perceiving them more as struggles to behave consistently with other vocation. “frequent visitors” or their deaf child, and in the process vac- “infrequent visitors”. illates between intense caring and Barriers to exploring helpless unconcern. deaf sexual experience 1.9 Vulnerability to abuse Deaf Indians and vulnerability become greatly vulnerable to exploita- tion and abuse both within their fami- 2.1 Poor level of abstraction skills; lies and in society, chiefly because of concepts such as risk and vulnerabil- severe shortcomings in their ability to ity do not exist. Low levels of educa- interact socially and interpersonally. tion, social skills, information, aware- According to our research, many of ness and communication rob India’s them have a tenuous understanding of deaf of the conceptual frameworks the concept of family and blood rela- needed to understand, discuss, explore tionships. and analyse certain issues of sexual In later life, this can lead to difficul- health. Typically, it is very difficult to ties in understanding and dealing with approach issues of risk-taking behav- some of the more complex and subtle iour, vulnerability, privacy, rights and aspects of a relationship, such as trust, violations, because of the absence of mutual respect, faith and fidelity. such a conceptual framework. Particularly in sexual areas of relation- ships, this can lead to difficulty in con- 2.2 All available material is designed fronting issues, negotiating safe prac- for hearing populations. There is vir-
  10. 10. Low levels of education and communication rob India’s deaf of the conceptual frameworks needed to discuss and explore sexual health.tually no information and awareness issues relating to education, communi-raising material that has been prepared cation and therapy, including audiologywith the needs of non-verbal, non-hear- and hearing aids. There are no studiesing populations in mind. As a result, of the sociology and psychology of deaf- 9available information is incomplete, ness, nor data on attitude formation,patchy, difficult to assimilate and not perceptions, belief systems and sourcesvery likely to be effective in bringing of guidance, or risk behaviour. In thisabout behaviour change. Since the deaf sense, researchers of deaf sexuality inperson’s main mode of information India have a formidable task, as theygathering is visual rather than verbal, have to start from fundamental levels,there is scope for serious misunder- and necessarily include informationstandings caused by free and unintend- dissemination as part of the explorationed re-interpretation of a visual without process itself. For instance, the attitudereference to the accompanying words. towards risk-taking cannot be explored until the concept of risk within the2.3 No studies on extent of HIV/AIDS HIV/AIDS epidemic has first beenor sexual abuse within the deaf com- explained.munity. The deaf community has been Virtually no informationlargely omitted from the agendas of and awareness raising material has beennational planners, even more so than, prepared with the needsfor example, the visually impaired who of non-verbal, non-have a strong National Association of hearing populations inthe Blind. The few existing studies of mind. As a result, whatthe deaf community tend to focus on information is available is incomplete, patchy, difficult to assimilate and not very likely to be effective in bringing about behaviour change.
  11. 11. Objectives Project Signpost’s main objectives were marriage partners, preference to gain a better understanding of: between deaf and hearing spouse, problems related to child rearing, rela-10 • The deaf person’s life, both within tionship of deaf parents to a hearing hearing families and deaf families; child, marital breakup. • The problems faced by deaf persons • Implications of difficulty in commu- living in a hearing world nication. • The socialization pattern of a deaf Based on these questions, 10 areas of person from childhood through enquiry were drawn up. These were: adulthood. 1. Family background 2. Growing up • The deaf person’s patterns of relating 3. Pre-marital relationships in close interpersonal relationships. 4. Marriage 5. Contraception • Deaf females’ vulnerability to sexual 6. Homosexuality abuse. 7. Sexual abuse 8. Masturbation • The deaf person’s awareness and 9. STDs understanding of sexual abuse. 10. HIV/AIDS Some of these, such as Family • Support systems available for the Background, were dealt with better in the deaf person. questionnaire, while others, such as Sexual Abuse, were easier to address dur- • Significance of peer group for a deaf ing Focus Group Discussions. This report person. represents the combined findings from all the research methods used in the project. • Knowledge, attitude, beliefs and practice of deaf persons vis-à-vis the Approach and human body and reproduction. methodology • Knowledge, attitude, beliefs and Gathering data on the project’s areas of practice of deaf persons vis-à-vis interest was done by negotiating two- sexual activity. year commitments with established groups and associations of the deaf in • Knowledge, attitude, beliefs and three major Indian cities, namely practice of deaf persons vis-à-vis Mumbai, Delhi and Chennai. Six such sexual preferences. core groups were identified: the Bombay Foundation of Deaf Women, • Deaf persons’ awareness of sexually the Shruti School for the Deaf, the transmitted diseases and HIV/AIDS. Sheltered Workshop for Adult Deaf Women, the St Louis College for the • Pre-marital sexual relationships. Deaf, and the Delhi Deaf Friendship Club, and the Delhi Foundation of Deaf • Influence of parental attitude in the Women. Commitments from each of development of a deaf child. them were necessary to ensure that the participating group remained constant • Dynamics of deaf-hearing relation- through the duration of the study. A ships. workshop plan was formulated. Detailed profiles of each group are • Knowledge, attitude, beliefs and included in Annexure 3. practice of deaf persons about Data collection used three methods: contraception. 1. Focus Group Discussions 2. In-depth interviews with Key • Marriage issues: problems in finding Informants
  12. 12. 3. Questionnaire a questionnaire to collect data from the Brief descriptions of each of these deaf, in view of the low levels of gener-are furnished below. al literacy and verbal aptitude of the deaf. However, the method was finally 11 FOCUS GROUP DISCUSSIONS included in order to tap a few more jots(FGD): The 6 core groups participated of information from those deaf whoin a series of about 6 workshops each, might be able to respond to the format.between November 1997 and February Questionnaire forms were in multiple-1999. Each workshop lasted three to choice format in English, Hindi andfour days and consisted of sessions Marathi. Language was kept deliber-approximately 4 to 6 hours long. In the ately simple, and even grammaticalsessions, various innovative and the- structure was bent to match deaf sign-atre-based techniques were used to ing grammar in some questions. Formsexplore the 10 identified areas of study were distributed to deaf schools andbased on the project’s objectives. associations from Mumbai, Chennai, Typically, the project’s facilitator Delhi and Calcutta.would have identified the main areas of Our experience with questionnairesdiscussion prior to each workshop, and as a way of learning about the deaf indi-would accordingly record the proceed- cates that it is possible, and that tooings of each session, by taking detailed with limited reliability, only whennotes. Transactions between partici- group leaders or hearing interpreterspants would usually be conveyed by the are present to explain each question to Communications skillsinterpreter and go-between. After each the deaf group. and literacy areworkshop, the notes would be reviewed Below is an analysis of the participat- measured on aand a detailed content report and analy- ing core groups’ demographic profile scale of 0 to 9, withsis done. and the depth of coverage from the pro- 0 representing the lowest level. ject’s needs point of view. IN-DEPTH INTERVIEWS: These The table on this page provides awere conducted with Key Informants, rationale for conducting the focusboth deaf as well as hearing people groups and IEC trials in three cities. ECONOMIC INDICATORS:working with the deaf, and covered the Points which emerge are: 1—3 Lower-lower to10 identified areas for exploration. A set 1. The group that is most commu- Upper lowerof guideline questions was prepared for nicative and enthusiastically involved 4—6 Lower middle tothe interviews; all the interviews were in the project (DDFC, Delhi) is predom- Upper middletape-recorded and transcribed. inantly urban. They include married 7—9 Lower upper to QUESTIONNAIRE: The original and unmarried persons but do not rep- Upper upperproject plan had not included the use of resent the underprivileged sections of MUMBAI NEW DELHI CHENNAI GROUP BFDW Shruti MPTC DDFC St Louis Sheltered School College Workshop Communication (0-9) 4 4 4 9 6 6 Literacy (0-9) 4 7 5 8 7 6 Married Yes No No No No No Unmarried No Yes Yes Yes Yes Yes Demonstrated Yes No No Yes No Yes Vulnerability Economic Level 4–6 7–9 1–3 7–9 4–6 1–3
  13. 13. The differences in knowledge and emotional maturity between a deaf adolescent and a deaf adult would be nearly negligible the deaf community. hood. In effect, what seems like a het- 2. The most communicative group erogeneous choice of research audi- that has a reasonable rural representa- ences in terms of demographics, litera-12 tion is Chennai’s St Louis College for cy and income level is actually remark- the Deaf. However, this group is exclu- ably homogenous in terms of knowl- sively male. edge levels, attitudes and vulnerability. 3. Chennai has the project’s only ado- • This approach also enabled us to lescent, male, unmarried group (St cover as wide a canvas of the deaf com- Louis College). They all have complet- munity as possible. Being marginalised ed their schooling, are attending col- and un-understood, the deaf are not the lege and come from low to middle subject of many studies. In drawing too income families. tight a circle around our research audi- 4. The best insights into the predica- ence, and presuming that other studies ments of rural women comes Chennai’s later would add to the understanding of Sheltered Workshop. However, they deaf sexuality, we might not only have represent very low literacy and com- been naïve, but also would have munication skills. ensured that our output, the curriculum 5. The only other group with on sexuality, would have limited appli- females, as well as higher literacy and cability. communication skills is the Shruti School for the Deaf in Mumbai. Participants of the However, this consists exclusively of urban adolescents. Questionnaire Survey 6. Mumbai’s BFDW and Delhi’s The age range was 14 years onwards. DFDW are the project’s only married Various deaf schools and association from females group, representing both unde- Mumbai, Chennai, Delhi and Calcutta veloped communication skills, and also participated in this study. We had give out low literacy and middle income levels. 600 questionnaire and around 183 were Thus, the three cities represent a filled and returned. spectrum of deaf response that will inform the project’s IEC trials. Not rep- AGE WISE DISTRIBUTION resented anywhere are married cou- Age Freq Percent ples, who demonstrate conflicting 14-20 85 47.0 interpersonal dynamics that make them unsuitable for sustained joint par- 21-30 70 38.7 ticipation as couples in our research. 31-40 18 9.9 Note: An interim evaluation of the 41-50 2 1.1 project raised the question of why such a diverse mixture of groups, represent- 50+ 6 3.3 ing age ranges from adolescent to mid- dle-aged, was necessary, and why the SEX WISE DISTRIBUTION project did not instead concentrate on Sex Freq Percent one demographic profile, such as deaf youth or women. There are two reasons Male 109 60.6 for our approach: Female 71 39.4 • Based on our pre-start-up discus- sions with those who have worked with the deaf, we had reason to believe that DISTRIBUTION OF SAMPLE BY AREA the differences in knowledge and emo- tional maturity between a deaf adoles- City Freq Percent cent and a deaf adult would be nearly Mumbai 96 53.9 negligible, unlike what one would expect between a hearing adolescent Chennai 39 21.9 and a hearing adult. This is traced to Delhi 31 17.4 the striking absence of significant Calcutta 10 5.5 inputs between adolescence and adult-
  14. 14. DESCRIPTION OF SAMPLE BY EDUCATION DISTRIBUTION OF SAMPLEMost deaf people appear to receive educa- ACCORDING TO TYPE OF FAMILYtion only at the school level. Though a great There was a more or less equal representa-part of the sample (44.8%) of the sample tion of both the joint and the nuclear type ofwas school going, another 40% of the non families in the sample population. 13school going population reported educa-tion up to school level. Freq Percent Educ Freq Percent Joint family 81 46.3 School 152 83.1 Nuclear family 94 53.7 College 24 13.1 DISTRIBUTION OF THE SAMPLE BY Voc. Training 7 3.8 ECONOMIC STATUS OF THE FAMILY More than half of the sample came from theSTYLE OF COMMUNICATION lower economic strata with the income ofA combination of oral language as well as the family being under 5000.signs is the method used by most familiesto communicate with their deaf children. Income Freq PercentHowever 10 deaf people also reported that <2000 18 14.3their families did not communicate with 2—5000 49 38.9them at all. 5—10,000 32 25.4 Deaf Person >10,000 24 19.0 Style Freq Percent Don t know 3 2.4 Oral 39 22.3 Signing 22 12.6 Both 114 65.1 Limitations of the study One of the sharpest limitations of the Deaf Person’s Family study is that it could only access deaf Style Freq Percent people who were organised in some way (that is, through school, college, Oral 34 20.4 association or club). This excludes the Signing 18 10.6 majority of Indian deaf, who are rural, Both 105 62.9 possess low communication skills, and have little or no access to either infor- Did not 10 6.9 communicate mation or even to other deaf people. Moreover, on the parameter of vulner- ability, these harder-to-reach audi-DISTRIBUTION OF THE SAMPLE ences are more vulnerable. However,BY MARITAL STATUS reaching remote and rural deaf youth was beyond the scope of this fellow- Freq Percent ship’s purview and resources. Single 144 79.1 On a broader level, deaf adolescents, Married 35 19.2 youth, children and adults, are all equally vulnerable, though in different Divorced 3 1.6 ways [e.g. a child may be more vulner- able to being sexually abused, while an adult may be sexually exploited at work or at home). To that extent, the project has sought as wide a coverage of differ- ent deaf populations as possible, to maximise the insights.
  15. 15. Groups of the deaf in Chennai that did not have a good interpreter found it nearly impossible to fill out the sexual health questionnaire. Questionnaires As the questionnaires could not be Most questionnaires were filled with translated into Tamil, certain Chennai the help of institutional moderators, groups that did not have a good inter-14 such as teachers, deaf group leaders preter found it nearly impossible to fill and so on. Only in very few cases was them. the project team directly involved in In Delhi, a group had to abandon the getting the questionnaire filled up. The questionnaire when one of the respon- reasons for this were chiefly that the dent’s parents took strong exception to questionnaire survey was outside the the questionnaire. scope of the sanctioned project, and was something we had added on to increase breadth of coverage. Thus our Key Informants budget did not permit us to personally There is skewness in information col- facilitate each institution that agreed to lected through the Key Informants fill out the questionnaire. This, howev- Interview method both in terms of deaf er, reduced our control over the versus hearing and also in terms of the process. In many cases, only a small areas of information. number of forms would be returned The project had hoped to have an filled, and we would have to include equal number of deaf and hearing Key them without any deeper insight into Informants. However, only 7 deaf per- In certain cases, the the quality of the information received sons could be located who had an principals or teachers or the manner in which questions had overview of the deaf community, suffi- of the deaf schools been administered to the deaf children. cient insight into their lives, and the became barriers to the In certain cases, the principals or willingness and the time (6 to 7 hours) successful gathering of teachers of the deaf schools became to share their thoughts. information, because barriers to the successful gathering of The hearing Key Informants identi- they found the project information, because they found the fied by the project were chiefly teach- questionnaire to be questionnaire “shocking” or “inappro- ers, whose insights related primarily to “shocking” or priate”. In this, they reflected the over- childhood experiences and education of “inappropriate”. In this, they reflected the protective attitude towards the deaf that deaf persons. They could shed very lim- overprotective attitude is common all over India, and which ited light on issues of sexual health, towards the deaf that is increases their ignorance and vulnera- risk, abuse and exploitation of the deaf. common all over India, bility. The project could not locate anybody and which increases In certain schools, the schoolteach- who had worked on marital or repro- their ignorance and ers filled up the forms themselves, and ductive health issues of the deaf. This vulnerability. we must assume that their own biases was expected as this is an area that would have been reflected in those receives scant attention not just in forms. India, but even in other parts of the Whenever interpreters helped the world. group to understand the questions, as One or two Key Informants with long with the Delhi Deaf friendship Club or standing experience with the deaf the Chennai Deaf Friendship Club, refused to share information with the there is a likelihood that the inter- project as they felt that sexuality was preters’ biases might have coloured the not the most important issue concern- deaf person’s responses. ing the deaf in India. In low literacy groups, such as the women of the Sheltered Workshop in Chennai, the project team conducted a special session to help the deaf women fill out the questionnaire. However, it proved extremely difficult to explain certain concepts to the group, and the entire process was so slow and exhaust- ing to the group, that eventually the forms had to be gathered in an incom- plete or dissatisfactory state.
  16. 16. Findings through much agonising about the 1. FAMILY LIFE future of the deaf child. Parents from lower socio-economic backgrounds tend to give top priority to family sur- 15 1.1 The reaction of the family vival even at the expense of the deaf to the deaf child child. From a very early age children are expected to share in the financial Family LifeP arents are generally unprepared for the appearance of a deaf child, andare shaken to their foundations when burden of the family. Such parents usu- ally do not have the resources or time to deal with the special needs of thesuch a child is born (Kashyap, 1998). deaf child. For them, ignoring theNot only is every member of the family child’s problem emerges as an uncon-affected but each one’s reaction will in scious coping strategy.turn have its effect on each of the oth- Parents from middle class familiesers, including the deaf child. This will tend to view children as a support sys-finally affect family inter-relationships, tem for the parents during the laterthe family’s expectations from the deaf years of their life. A deaf child born inchild, her sense of self and self-respect, such a set up is more likely to remain aand numerous practical aspects of the lifelong responsibility than an old-agefamily’s daily life. support, and accepting this reality is a The parents’ first response to the shock to the parents. Though they“major crisis” that a deaf birth precipi- might want the best for their deaf child, The mother was unabletates is usually a reactive period of their limited resources are often inade- to accept the child.mourning, by the end of which most of quate to attend to his special needs. Though she put effortsthem evolve coping strategies. Parents’ In upper class families, much more into providing the childreactions range from denial of the emphasis is placed on the social with training, shechild’s problem to the rejection of the acceptability of the child. Eager to physically and mentallychild itself, to a round of doctor-shop- ensure that the child integrates well abused the child.ping and faith-healing in the hope of a into the mainstream of society, these Today the child is grown up. He hasmiracle. Due to such unrealistic activi- parents sometimes ignore the handi- limited education, noties, important developmental years of cap, and instead funnel resources into skills in communicationthe deaf child’s life are sometimes teaching the child to ‘speak’, be ‘oral’, and no confidence. Hesquandered. be ‘normal’ and so on. They may be is unable to find a job. To compound the difficulties, the overprotective or, on the otherdiagnosis is not accompanied by sup- extreme, totally reject the child. Many Educationist, Mumbaiport and guidance to the parents on such children grow up well suppliedhow to deal with the child’s disability. with whatever money can buy butThus most parents are left to work out starved of emotional support and car-their own responses to the child. ing. Ironically, parental neglect and Generally, the family’s strategy for lack of love contributes to their inabili-coping with a deaf child is greatly influ- ty to get the most out of education andenced by their socio-economic back- other resources they are provided with.ground. The deaf child will usually A word here about the effect of amake greater demands on the family’s deaf birth on the relationship betweenfinancial resources by way of medical the parents. The presence of a deafcare, prosthetic aids and appliances, child does not necessarily createspecial educational services, transport disharmony in a stable marriage, butcosts, and so on. The ability to pay for may precipitate conflict between mari-these facilities would depend upon the tal partners whose personalities andeconomic and employment status of interactions have already predisposedthe family and its number of children. them to conflicts (Kashyap 1991). AThe deaf child may also adversely survey in Wales by the Welsh Nationalaffect the parents’ earning ability School of Medicine found that thebecause of the extra time they must divorce rates among couples with adevote to his or her special needs. handicapped child were 10 times The parents of a deaf child go greater than the national average.
  17. 17. When a family does not resolve its initial reaction to its deaf child, it will continue to exert a retarding influence on that child’s ability to adapt. 1.2 The deaf person as self, stirs up anxiety, consternation and a member of the family alarm in his parents. The relationship 16 D uring the early years, a deaf per- son may be unaware of his or her handicap, and may enjoy instead the between a hearing family and a deaf adolescent is often characterized by abrupt and limited verbal communica- attention, warmth and tolerant atmos- tion that makes it difficult to discuss phere around him. This is to the deaf complex feelings in their subtlety andFamily Life child’s detriment as she does not get nuances. It may not be possible for a the corrective or disciplinary influ- family to make the special effort it ences that other children get. To an takes to encourage real communica- extent the parents overcompensate by tion, and this gives rise to experiences being over-tolerant of the deaf child. of rejection for a deaf person. However, as the deaf child grows up Over time, the deaf child may with- and, like other children, seeks identity, draw from his family, concluding that autonomy and assertiveness, the par- there is no future in seeking their ents’ permissiveness lessens sharply closeness and support. He will con- and is replaced with discipline and a clude that they are there to tend to his My driver used to drop sudden expectation of age-appropriate needs, but that he or she should never me and pick me up from behavior. hope for emotional closeness. Thus, school everyday. I used When this happens with a deaf child, over the years from infancy to adoles- to sit on the front seat he is confused by the inexplicable cence, a deaf child’s relationship with with him. One day while changes in behavior of those around the family moves from one with too returning from the him. He feels rejected, less important. much love and tolerance to one where school he touched my These feelings, complicated by the communication is sparse, and there is breast. I thought it had basic difficulty in communication, a feeling of distance, rejection and happened by mistake. He began touching me result in the deaf child withdrawing alienation. more and more while more and more into himself or herself. coming back from What did he do wrong? Why are they so 1.3 The deaf child’s relationship school everyday. I was upset with her? In later years, a deaf with family members too scared of him and was afraid that my parents would say that I person’s main childhood memories may be of these restrictions, rather than the earlier happy period of toler- T he deaf child is deeply affected, and for life, when she or he is deprived of close interactions and was making up stories. I ance and warmth. exchanges within the near family. Such am 55 years old and till Deaf people are perceived by their family interactions are the chief today never told this to families as a significant burden (Oscar source, and a rich source, of conceptu- anybody. P. Cohen, 1978). Between the trauma al information that helps a child under- Personal sharing, experienced by parents with a handi- stand behaviour, moods, bonds and Mumbai capped child and the limitations boundaries. For instance, the hearing imposed on the child by the sensory child learns to connect various words loss, deaf children and their families and tones of voice to body postures and are at risk from infancy through adult- stances, and thus slowly acquires an hood. When a family does not success- understanding of how body language fully overcome and resolve its initial signals various moods, such as anger, reaction to having a deaf child, it will disapproval, tension, conflict, or happi- continue to exert a retarding influence ness. This is an aspect of learning that on that child’s ability to adapt. a deaf child misses out on because of When a hearing child enters adoles- his handicap. Similarly, parents help a cence, the possibility of tensions in the child comprehend the meaning of family usually increases as he or she blood relationships, near relatives, dis- struggles to establish a new and inde- tant ones, acquaintances, strangers pendent identity within the family and friends through a combination of structure. The strain is intensified for a spoken words and body language. This deaf child, who will experience greater is an entire area of natural learning difficulty in establishing a personal that is missing from a deaf child’s life. position within the family structure. Again, a deaf child cannot pick up the The adolescent, just by being him- undertones of conflicts unless they are
  18. 18. An ambivalence, or love-hate relationship, colours and dominates all deaf-hearing relationships.visually demonstrated. problems. Nonetheless, they realise As might be expected, this has far- that they themselves would trust areaching implications on the deaf per- hearing person over a deaf person dur-son’s vulnerability in relationships and ing a real problem. This ambivalence, 17intimate encounters. Also, it limits the or love-hate relationship, colours anddeaf person’s understanding of shades dominates all deaf-hearing relation-of difference between the immediate ships. Family Lifefamily and the extended family consist- Analysis of focus group sessions in aing of uncles, nephews, aunts, nieces Mumbai School group indicated thatand so on. On top of all this, a deaf boys were comfortable with theirchild will tend to have fewer significant father when they displayed more of ainteractions with people outside the supportive than an authoritarianimmediate family. As a result, till approach.around late adolescence many deafpeople seem unable to differentiate 1.4 Sibling Relationships I was 12 years old whenbetween friends and relatives. Theirconclusions about who is who are oftenbased on the frequency of appearance S iblings serve an important family function. In general, they are less emotionally tied to each other than to this happened. One day as I was late for school because my father wasand interaction. their parents (Albert T. Murphy, 1979). very busy, so he sent There is more communication Siblings serve as confidants or behav- another man to drop mebetween the mother and the child than ior modifying critics for one another. at school. This manbetween the father and the child They test new roles, complement, frequently came to our(Kashyap 1983). This is substantiated observe and evaluate one another in house so I knew him. Heby our questionnaire data findings: 141 ways that can contribute to social dropped me in mydeaf people report a closer relationship growth and maturity. They learn to classroom. After he leftwith their mother, and 97 (69%) of share each other and share resources. my teacher asked methem said that they would rather seek They can protect each other, and serve who he was. I said Ihelp from her in a problem situation. as a buffer between each other and the don’t know. In the evening my father came However deaf children in residential parents or the outside world. They can to fetch me. My teacherschools did not show a similar reliance. make life simple or more complex, asked my father whoOut of the 40 cases, only 55% said that more comfortable or more difficult. was the man who hadthey would rely on their mother for The kind of acceptance a deaf child come to drop me. Myhelp while 27.5% said that they would gets from his parents determines the father laughed and toldrely on their father for help. The rest kind of relationship he will have with my teacher that he wasindicated that they would rely only on his siblings. When the deaf child is his brother, my Kaka.their brother, their sister, or both younger than the hearing sibling there Later at home my fatherbrother and sister. seem to be better chances of a good sat and explained to me However, this level of trust and relationship as the hearing sibling various relations andreliance is linked to whether the parent takes on the role of protector. how to address them.is deaf or not. Of 4 deaf children with The gender of the hearing sibling is Deaf activist, Mumbaideaf fathers only one said that he an important component of the atti-would rely on him for help in a prob- tudes towards the deaf personlem situation, while out of 4 cases who (Cleveland & Miller, 1977). Older malehad deaf mothers none would rely on hearing siblings will show lack oftheir mothers for help in a problem sit- information, perhaps because of lesseruation. Though our sample is too small involvement with the deaf sibling.for significance it does seem that deaf Female hearing siblings have a closerchildren do not rely on their deaf par- relationship with the deaf child notents as sources of help in a problem sit- only in the early years but continuinguation. into adulthood, perhaps because they As far as hearing people go, the deaf are probably given parent surrogatepeople tend to believe that deep and roles and thereby learn more aboutirreconcilable differences exist their deaf brother or sister. Our ques-between them, and that the hearing tionnaire data shows that the youngerperson will always have an imperfect age group (14-20 years) enjoys closerunderstanding of the deaf person’s relationships with brothers and sisters,

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