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. 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 firstname.lastname@example.org
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 email@example.com
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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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,
19. which weakens with increasing age. and deaf. Deaf males reported closer bonding The residential deaf school, in con- with hearing sisters compared to deaf trast, offers limited socialisation oppor- 18 females with hearing brothers. tunities to its students. Deaf persons In families with a deaf child, the old- from these environments have corre- est and healthiest siblings may func- spondingly fewer or no hearing tion as intermediaries between the friends.Family Life external world and the deaf child, between parents and other siblings, and between the parents themselves. 2. EDUCATION For example, the parent may rely on a sibling to translate what a deaf child is 2.1 Deaf persons’ education saying or the meaning of a non-verbal gesture. The “normal” child in the family feels pressured by parents to balance the scales against the deaf sib- I n India there are 478 government schools for the deaf, with a capacity of about 33,000 deaf children (Direc- ling’s shortcomings. tory of Schools for the Deaf, AYJNIHH). When both siblings are deaf, as in 13 At an average, each school has around cases brother and 14 cases sister, there 45 male and 25 female students. This did not seem to be closeness. They do excludes the vast majority of India’s A woman reported that not seek each others help in any situa- estimated 1,443,431 deaf children and she required her sister tion whatsoever. youth between ages 5 and 14 years. to interpret for her as Moreover, these schools are beyond she could not 1.5. Deaf person and peers the reach of parents, because of pover- communicate very well. Another woman participant reported that P eers are a significant part of this population. Though deaf persons live among hearing people and have to ty, low awareness of their existence, and a poor referral system. Effectively, the deaf in India may be described as a she could manage to deal with them daily, they relate more population beyond the reach of rele- communicate only very to their deaf friends. Our questionnaire vant education. simple things and that data shows that the younger age group It is an irony that special education she depended on her (14-20 years) have as many deaf as for the deaf falls within the realm of older deaf oral brother to communicate with her hearing friends. This may be because Ministry of Social Justice and parents they are school-going and socialise in Empowerment, and not the ministry of their neighborhoods. Those in the 21- Education. This reflects a governmen- Focus Group 30 years group said that they had a lim- tal stance that education for a handi- Discussion ited number of hearing friends. When capped person is an act of charity. The it came to support in a problem situa- Ministry provides a 100% grant-in-aid tion, only 21 who had hearing friends for teaching and non-teaching staff of said they would seek their help while special schools, and an additional 12% 66 who had deaf friends said that they of the total grant for other non-salary would seek their help. This corrobo- expenses like rent, electricity and tele- rates the findings of the focus group phone.) The Ministry is also supposed discussions as well. In a Figureheads to provide a 50% grant for the purchase session, the players had to choose from of new equipment every year. a panel of figureheads for help in solv- However, schools report that this latter ing a dilemma, and picked ‘[Deaf] grant has not been disbursed even Friend’ as first choice every time. Only once in the last ten years. if the friend was unable to help did the Education for the deaf is free of cost. deaf person turn to a hearing person. However, this comes packaged in an The family’s acceptance of the deaf attitude that the deaf cannot really ben- child plays an important role in the efit from any education. The provision child’s socialisation. It was seen in our of education for the deaf by the govern- data that among families who routinely ment is best seen as a mere gesture, introduced all their children, deaf and not backed a commitment to better the hearing, to guests and others, deaf chil- lot of this community or help them dren had more friends, both hearing actualise their potential.
20. Deaf education falls under the Ministry of Social Justice and Empowerment, and not Education. To the government, education for a handicapped person is an act of charity. As there is no standard curriculum the specific needs of deaf children, theyfor the deaf, most schools follows their have access to information and knowl-own approach. Since 1997, when the edge they need in such an environ-Person with Disabilities (Equal ment. 19Opportunities, Protection of Rights and For deaf children in special schools,Full Participation) Act 1995 and its teachers are an important part of theRules 1996, were enforced, there has support system, being among the very Educationbeen confusion about who is responsi- few adults who can understand andble for designing a special curriculum communicate with them. Teachersfor the deaf — the Commissioner of here take on substitute parental rolesDisabilities, the Rehabilitation Council, in the child’s life and also form theor the state governments. child’s link with its parents. In February 1999, after a meeting to Most special schools go up to 7thdiscuss shortcomings in the implemen- grade, and follow the curriculum oftation of the act, the onus of developing hearing schools, with the concessiona curriculum was placed on the State that the deaf child is given 1.5 to 2Government. Maharashtra’s special years to complete one year’s syllabus. A father brought his 6 orcurriculum, for instance, consists of Thus, by the time the child completes 7 year old daughter to andowngrading the normal syllabus, middle school, he is about 18 years old. institute’s Clinicalwhereby a deaf child in 10th grade will After completing 7th grade, he can Psychology department.study maths of 7th grade level. either pursue vocational courses such He claimed that she was It is compulsory for teachers of the as bookbinding, photography and mentally retarded anddeaf to receive special training and be screen-printing or integrate into a wanted to institution-registered with the Rehabilitation hearing school. alise her for psychiatric check-up and treatment.Council of India. This body now enjoys However, the reality is that most After a while, thestatutory status through an act of par- deaf children passing out of special psychologist on dutyliament namely the Rehabilitation schools fail to integrate successfully asked the father to stepCouncil Act, which enables it to shoul- into hearing schools. Various factors out for a while, and thender the responsibility of regulating and are responsible for this. tried to communicatetraining rehabilitation professionals. Integration into a hearing environ- with the little girl. TheThe Rehabilitation Council of India ment requires the deaf child to have a girl broke down andintroduced the bridge course, which sound language base, which is usually began crying. Throughenables people working with the deaf acquired during the pre-primary and signs she explained thatpopulation to register as teachers with the primary years of education. It is she did not want tothe Rehabilitation Council, without tak- during this stage that the deaf child will return to her house and did not want to be withing into account their designation or require the most effective and spe- her father. She had beenyears of experience. Even a non-teach- cialised training. However, the the victim of sexualing individual who has worked with Rehabilitation Council of India, the abuse for some time.handicapped persons may attend the body responsible for training profes-bridge course and call himself or her- sionals and monitoring them, concen- Clinical psychologistself a teacher. Such poorly conceived trates on the higher levels of specialmeasures only further impoverish the education. The deaf child receivesquality of education that a deaf Indian shoddy educational inputs in his earlymay expect. school years, because the poor quality of his teachers. 2.2 Deaf children There are two levels of training for in special schools the special educators, the B.EdC hildren who go to special schools realise, often for the first time, thatthere are other deaf children like (Bachelor of Education) course and the D.Ed (Diploma in Education) course. B.Ed-level professionals teach higherthem. Partly because of this, deaf chil- classes while D.Ed-level trainers teachdren are most comfortable studying in pre-primary and primary classes. Thespecial schools, where their prime D.Ed level trainers do not have the nec-need for communication is met, reduc- essary specialisation to handle theing their sense of isolation. Because a needs of the deaf child at the lowergood special school is geared to meet level. This is an important barrier to
21. The reality is that most deaf children passing out of special schools fail to integrate successfully into hearing schools. successful integration of the deaf child cents and their hearing classmates in later years. reveals that deaf students were not Ironically, a deaf child who is well comfortable with hearing students. 20 trained at the lower levels will not The hearing initiated interactions but require specialised trainers at the often the deaf did not respond to the higher levels. Thus, the Indian deaf overtures. Deaf students seemed to child is affected by the misplaced prior- lack sensitivity to the feelings of others.Education ities of those who plan his or her edu- Many hearing students felt rejected by cation. the deaf. On the other hand, the deaf Another important factor is that most perceived the hearing as having no hearing schools are unwilling to admit problems. They felt disadvantaged, and deaf children, though a special provi- in a sense, ‘inferior’. sion by the Social Welfare Board allows It must be added that access to spe- for the post of a specialised resource cial schools or successful integration person to help teachers in hearing into a hearing school is possible for schools that have more than 6 deaf stu- only a small part of the deaf population. dents. Most schools either are unaware Thus a majority of those deaf children Niki’s earliest memories of this provision, or lack the budget to who go to school at all might go to just of the hearing school add to their staff. any school, for reasons of proximity or were they enrolled him cost rather than suitability. must have been of 2.3 Deaf children in teachers who had no idea what to do with hearing schools 2.4 Deafness and employment him, and classmates who shrank away from his approach. His sharp S evere delays in acquiring language and communication skills block deaf children from the informal T he Ministry of Labour has estab- lished 17 Vocational Rehabilitation Centres (VRCs) for the handicapped all intelligence found no avenues of learning that hearing chil- over India. One per cent of jobs in class fuel to fire it in the dren use to extend their social environ- III and class IV posts in central and barren environment of ment and develop life skills. state government services are reserved Mangalore. Frustrated, Studies abroad and experiences in for the deaf. he would stand outside India prove that there may be many The Vocational Rehabilitation the school building advantages for a deaf child who inte- Centre in Mumbai registers around throwing stones at it, breaking its windows grates well into a hearing environ- 1,500 to 1,800 handicapped cases every and croaking his fury at ment. Deaf children who are main- year. The centre provides training in 13 his classmates and streamed into their local schools prob- different skills, according to the suit- teachers. ably do develop better life skills in cop- ability of the individual determined by ing with their surroundings (Patricia medical and psycho-social evaluation. Excerpt from Niki’s Bryant, 1980). The individual is then trained from 3 Caregivers, story of a These advantages would be possible months to one year depending on the deaf man with AIDS only if the deaf child was given a great skill needed and his capacity to learn. deal of special attention to cope with After this, attempts are made to secure the pressures of a hearing environ- gainful employment or encourage self- ment. This means special training: employment for him. There is a relax- speech therapy, language training and ation of the upper age limit of up to 10 auditory training. The deaf child’s suc- years for appointment to clerical and cess in a hearing environment largely subordinate posts. The minimum edu- depends on the degree of hearing cational qualification for recruitment impairment, and the child’s ability to to the clerical cadre in banks has been lip read and pick up oral skills. Only a relaxed in favour of the deaf person to small fraction of the deaf population II division for matriculates and III divi- succeeds in this enough to integrate sion for those who have studied up to successfully into a hearing set up. higher secondary. A study by Bello and his colleagues The Mumbai VRC reports that jobs (Wilbert L. Pronovost, 1978) on devel- for the deaf are not easy to get. Even oping an approach to psychosocial registered members may have to wait adjustment and communication for years. Special recruitment drives between mainstreamed deaf adoles- are launched once in 3-5 years, but the
22. Most tragic of all barriers to deaf employment is the exploitation of the handicapped quota by hearing peoplenumbers of vacancies are limited and system precedes a writing system.there are too many applicants. In addi- Normally children learn to speak andtion, the training given by the VRC is of understand much of their languagemediocre quality and not regarded as before they learn to read it. Reading 21adequate by employers. It has also readiness instruction focuses on recog-been noted that VRCs do not make any nizing the units of written languagespecial effort to promote the recruit- and stirring them in short term memo- Communicationment of handicapped persons for ry into some sort of system that match-advertised jobs. es what is stored when listening to Most tragic of all barriers to deaf speech. By the time hearing personsemployment is the exploitation of the reach adolescence, they have devel-handicapped quota by hearing people, oped sufficient skills in reading towho have sometimes procured fake allow independent learning of newcertificates of deafness to bag jobs information through print.reserved by quota for the handicapped Educationally, instruction in writingpeople. is introduced after children have In brief, Indian deaf people general- learned some reading skills. Writingly do not have stable employment, and calls for the coordination of visual-are therefore dependent on hearing motor activities and linking these skillsmembers of the family to support them with an internal language symbol sys-financially. This is more so if the deaf tem. A woman reported thatperson has a family of his or her own. The deaf child is faced with the task she had a language of learning to read without having problem at home developed an internal language symbol because she had studied 3. Communication system. Reading also involves develop- in an English medium ing a symbol system for a deaf child. school and therefore3.1 Communication and language The majority of deaf students have an could not lip-read the inadequate symbol system by the time language spoken at home. Another womanO ur most complex aspect is one that we typically acquire effortlessly:language. Natural language has two they finish education. For deaf chil- dren, the most complete signal is a visual one, their auditory signal being reported that her mother took special classes in English to communicateprimary categories: auditory-based distorted and incomplete (Kathleen F. with her.language and visual-based language. Crandall, 1978).The vast majority of languages are of The detection of deafness in a child Focus Groupthe first type, being spoken languages at an average happens around 3-4 Discussionthat are highly dependent upon the years of age. Even when it is earlier,ability to detect, process and produce there is no help and guidance availableauditory signals. These languages are to the parents. Due to this the childacquired by hearing people without loses out on the most significant yearsconscious effort. The second type of of development during which spe-languages are gestural ones. These are cialised training might be useful inhighly dependent upon the ability to acquiring a symbolic language base.detect, process and produce visual sig- Demographic studies in USA indi-nals. These languages are acquired by cate that deaf students attending spe-most deaf people without conscious cial schools or classes demonstrate lit-effort. tle growth in reading achievement Significant learning obstacles are between the ages of 13 and 20 years,evident when attempts are made to and that only about 10% of young deafteach an auditory-based language to a adults can read at or above the eight-deaf individual. These problems are a grade level (Trybus & Karchmer, 1977),direct result of trying to convey audito- the level of many daily newspapers.ry language through fragmented audi- In our study, there were 152 casestory cues and auxiliary systems, such who had a similar language of commu-as speech, reading and writing, which nication in school as that spoken byare artifacts of the auditory language. their family at home. Out of the 30 peo- Developmentally, a language symbol ple who used English as a language for
23. Studies indicate that deaf students in special schools demonstrate little growth in reading achievement between the ages of 13 and 20 years communication, 17 also had families diate family. In addition, the overpro- who communicated in English. The tectiveness of parents hampers the nat- remaining 13 were taught in a lan- ural socialization of the child when 22 guage different from the one used at they insist on being a part of the deaf home. child’s every interaction with outsiders. Deaf education institutions insist on One consequence of this is that the developing oral skills and believe that deaf child does not absorb norms ofUpbringing to achieve this goal the child must be approved social behavior. discouraged from using signs. Parents The deaf child is socialized in the are strictly cautioned against this same environment as the hearing means of communication with the child, but the process in often fractured child. This compounds the problem of and incomplete. While deaf children the deaf person acquiring any lan- may correctly imitate the visual aspects guage base at all that respects their of the social model, the auditory infor- abilities and needs. mation — such as tone of voice, style of As reported by deaf people, 114 used language, intonational features, and both signing as well as oral language specific language structure — which for communication. 102 of them are learnt incidentally by hearing chil- reported that their families used a style dren, are often unavailable to them. of communication similar to theirs. Thus, their behavior may be inappro- However the families’ efforts to com- priate simply because they lack aware- municate were not perceived as suffi- ness of specific social customs (Mary cient to meet the needs of a deaf per- D. Mcginnis, Clarie Davis Orr, and Jane A recent advertisement son. Very few (9) deaf people reported Moore Freutel, 1980). of Whispers sanitary no communication from their families. Parents may be uncertain (Patricia napkins on TV features a Deaf people who have had education Bryant, 1980) of what demands to make well-known personality in residential special schools and are on their deaf child or may rebuke them and a blind girl. The ad around other deaf children all the time inconsistently. It is often more conven- targets women, report the use of both oral language ient for them to keep the deaf child requesting them to buy and signing for communication. sheltered from experiences that could their brand of sanitary The fractured communication challenge them and provide them with napkins and assist them in helping the blind. One modes that thus develop between the opportunities for learning and growth. deaf woman watching deaf child and the family, the school, Too often, the magic world of TV the ad thought the and society at large contribute enor- becomes the deaf child’s window on personality was mously to the child’s vulnerability, par- life. Programs seen through inexperi- explaining the use of the ticularly in intimate relationships and enced eyes are not completely under- napkin to the blind girl. sexual situations. Unable to express stood, and certainly do not accurately her experiences and feelings smoothly, reflect real life. In all focus group dis- Hearing spouse and never certain how much was mis- cussions, participants displayed a of deaf female understood or not understood at all, the detailed knowledge of different pro- child experiences intense loneliness. A grams on TV, and were able to accu- deaf child experiencing sexual abuse rately mimic the behaviour of different will probably have no trusted person to well-known heroes and heroines. In whom she could turn for advice, general, though, deaf children are redress and help. unable to fit what they see on TV into any kind of framework acquired through interactions at home. 4. UPBRINGING 4.1 Socialization 4.2 Disciplining the deaf child: difficulties parents face T he inability to communicate fluent- ly with family and society limits the deaf child’s socialisation and reduces T he overprotective attitude of most parents towards their deaf child fosters greater dependency. A hearing the meaningful interactions she will child in the same family, for example, initiate with people outside the imme- might learn about the nature of respon-
24. Fractured communication between the deaf child and her family and society at large contributes enormously to the child’s vulnerability, particularly in intimate relationships and sexual situationssibility and the value of personal com- in her environment also breeds in hermitment through the age-appropriate an ingrained mistrust of other people,behaviour she or he experiences from specially hearing people. Communic-others. The deaf child, however, is con- ation with them has always been a hur- 23sidered a perpetual infant, and may dle, and their motives have never beennever experience age-appropriate quite clear to her. As the child grows uptreatment. This serves to stunt both and develops a sense of her self, she Relationshipssense of responsibility and understand- fears that if she does not attend to hering of duties and commitment. own needs, no one else will. This leads The family is usually caught in a to a certain aggressiveness in gettingdilemma. On the one hand, they are what she wants, which may be inter-interested that the child acquire a ‘nor- preted by others as ‘selfishness’ ormal’ standard of living. On the other ‘pushiness’. This is a pattern of behav-hand, they may not be equal to the con- iour that can also be noticed withinstant effort and patience it requires to their own relationships, even withexplain rules and situations, and to other deaf persons: the deaf person’sinclude the deaf child in all conversa- main focus seems to be fulfilling his ortions. As a result, a deaf child is often her own needs.told or shown what to do but not why. Similarly, the sharing of experiencesBaffled and confused, the child between a deaf person and others isbecomes moody or stubborn, or throws limited to sharing descriptions of A deaf boy role-playingtantrums, which are labeled as indisci- events rather than the emotional his reaction to a hearingpline and punished even more. The undertones that accompany them. girl’s rejection of hisdeaf child is only aware that her par- During the project’s focus group dis- suggestion that they have sexual intercourse,ents, who used to be so loving and pro- cussions, there were several occasions argued with her thus: “Itective, now punish her often, inconsis- when traumatic childhood incidents helped you [sign fortently and for no obvious reason. were disclosed, often for the first time support] by buying you A deaf child thus grows up with a in that person’s life. However, the nar- ice-cream, I helped youfeeling that his life is not only con- ration would usually be unemotional, by coming for walkstrolled by hearing people, but that he sticking closely to the details of events with you, I helped you bycannot make do without them. This rather than the accompanying feelings. talking to you. Now howlifelong ‘bondage’ continues even after This is likely to reflect both the paucity can you refuse to helpmarriage, when hearing members of of the signed language and also a me by having sexualthe family might take decisions on degree of obstructed emotional devel- intercourse?”issues such as contraception for a deaf opment. Focus Groupcouple. When a deaf couple has chil- When deaf persons turn to a friend Discussiondren, they may hand over the responsi- for help, what they expect is sugges-bility of their upbringing to their own tions for action, rather than analysis orhearing parents. counseling. Similarly, they see their own mundane everyday interactions with their deaf friends as “help given”. 5. RELATIONSHIPS Friendship by itself is viewed not as an emotional bond but as a succession ofD eaf persons may have difficulty putting themselves in ‘someoneelse’s shoes’ and thus ‘empathising’ actions that one person did for another. The emotional content of those actions is often not sensed or acknowledged. Awith their situation. As they only pick male could easily place the same valueup visual aspects of information, they on buying a girl ice cream as on hergain only a partial understanding of ‘letting’ him have sex with her.the social and emotional give-and-takethat a relationship requires in order to 5.1 Deaf Hearing Relationshipsgrow. Abstract information, such asinferring mood from body languageand other behavioral cues, is not an A deaf Indian’s prime relationships are always with hearing persons. Throughout life, either willingly orimportant part of their understanding. unwillingly, the deaf person has to The deaf child’s early isolation with- interact with the hearing people in his
25. This lifelong ‘bondage’ continues even after marriage, when hearing members of the family might take decisions on issues such as contraception for a deaf couple. environment, beginning with his hear- not significantly different from that of ing parents. When viewed from a hear- others (AIDS Action): Asia Pacific ing point of view, relationships involve Edition, Issue 35, April-June 1997). 24 four basic communication skills (Mary However, their knowledge and aware- D. McGinnis, Clare Davis Orr and Jane ness of sexual functions, sexuality in Moore Freutel, 1980): relationships and sexual health is dra- 1. The ability to attend to another matically different. The overprotectiveSexuality person, such as following a topic, attitude of parents, their perception of change of speakers, and following a deaf person as a “perpetual infant”, lengthy presentations. and their difficulties in communicating 2. The ability to respond sponta- smoothly with them, all contribute to a neously within conversations; situation where sexual information is 3. The ability to clarify communica- actually withheld from the deaf. tion — to notice, point out and Parents and hearing peers may treat correct misunderstandings; them as people whose auditory prob- 4. The ability to understand appro- lems are much graver, and whose sex- priate and inappropriate social ual needs are of secondary importance. behaviour. This barrier to recognising the sexu- While a hearing person acquires al identity and needs of a deaf person such abilities through interactions is not restricted to India, but may be a within the home and in the environ- widespread global phenomenon. Even Roopa (50, deaf) related a 20-year-old incident in ment, the deaf person has few oppor- in countries such as the USA, it was which she discovered a tunities to pick them up. Thus, when a only in 1998 that the first stirrings of lump in her breast. She hearing and a deaf person enter a rela- protests began to emerge from deaf told her husband, who tionship, there are usually two differ- lobbies, who pointed out that life-sav- was also deaf. He, in ent and mismatched levels of interac- ing information on HIV/AIDS had not turn, told his sister, who tion, each with its own expectations. been designed for deaf populations and was a doctor. Tests Matters are worsened by each one’s hence was unavailable to them. Today, revealed that it was a attitude towards the other — on the the deaf in the USA are recognised as cancerous lump deaf person’s part, there is a simmer- one of the populations at high risk for requiring immediate ing, unexpressed resentment of the HIV/AIDS. surgery. Nobody told more varied options and abilities open At the World Federation of the Deaf Roopa or her husband what the tests where for to the hearing person. On the other Congress held in Brisbane in July 1999, nor the significance of hand, the hearing person may view the only three out of more than 200 papers the results. deaf person as an obligation, a duty, a dealt with sexual issues of the deaf. It After the operation, burden, someone to be helped and sup- might be said that deaf sexuality has there were no ported, someone who cannot stand up been a blind spot in the world’s percep- discussions. Roopa was for herself or himself. The acceptance tion of this community. The thrust of just told her that she of equality that is basic to a balanced ongoing research and discussions has was fortunate to have relationship does not come easily tended to be hearing impairment, lan- survived. between a deaf and a hearing person. guage, new audio technologies and Focus Group Exchange of health-related informa- communications. Today, this narrow Discussion tion in such a setting is minimal, and focus has created a deaf community often control of the deaf person’s body worldwide whose knowledge, ability, and decisions about it are taken with- and skills in safeguarding their sexual out the deaf person’s consent or knowl- health has been impaired. edge. This is starkly illustrated by the Although existing studies are inade- story of a deaf woman who was operat- quate, Project Signpost has encoun- ed for breast cancer without her know- tered enough empirical evidence in the ing that anything was wrong with her. last two years to say that the incidence of child abuse, rape, STDs, HIV/AIDS and abortions are likely to be danger- 6. SEXUALITY ously high among India’s deaf popula- tion. In the interests of a wider and R esearch indicates that the sexual experience of disabled persons is deeper understanding, we have sup- plemented the project’s findings with
26. Empirical evidence suggests that child abuse, rape, STDs and abortions are likely to be dangerously high among India’s deaf populationrelevant and supportive case histories of a women’s group were able to indi-that we gathered in other sessions dur- cate the existence of the uterus, whiching the project. some of them called the ‘baby bag’. 6.1 Knowledge about Function 25 the human body Participants seemed aware of theB ased on the Body Mapping sessions processes of digestion and breathing, Sexuality that were conducted with our six and felt that there must be organs con-core deaf groups, the average deaf per- nected with these. Females from theson’s understanding of the human more literate groups knew that men-anatomy and functions could be said to struation and child-bearing alsobe superficial. The body maps were require organs, but could not provideevaluated against three criteria: knowl- any further details.edge of the existence of a particular The more literate and affluentorgan; knowledge of its placement; and groups in general showed greater inhi-knowledge of its function. bitions about drawing or discussing genital and reproductive functions. InExistence of organs the discussion of parts of the body that A participant shared herIn general, there was a wide ignorance they liked or disliked, the focus was on grief, describing herof the fact that different systems are the parts with ‘accepted’ social func- brother’s suicide nineresponsible for different bodily func- tions, such as hands, legs, nails, ear, years back. Shetions. Among the functions, the heart and lips. The women of the least liter- described how herand the stomach were known to exist, ate group, at Chennai, also displayed family had had to breakbut their shape, position and function the least inhibitions when discussing down the door, and howwere poorly understood. Specialised reproductive organs and functions. she had seen himorgans like liver, bladder, lungs and hanging from the ceilingkidneys were unknown within the 6.2 The period of Adolescence fan. She admitted that she had never talkedgroups. The external reproductiveorgans were known, but the femaleinternal organs were not known or T he distinguishing feature of a deaf child entering adolescence is the absence of any guiding wisdom. A about this incident before because no one in the family had broughtunderstood. hearing child might already have it up with her or asked This overall ignorance was more acquired information on accepted and her how she felt about it.pointed in groups that had never been unaccepted behaviors through social She shared the episodeto school. In more literate deaf groups learning. Deprived of this knowledge unemotionally, stickingwith members who had attended a because of their disability, the deaf to the facts andhuman anatomy class in school, the must grope their way through adoles- observations.knowledge of organs was more cence. As a result, their behavior tends Focus Groupdetailed. to be impulsive. Guided, like anyone Discussion It should also be added that the deaf else, by the awakening hormones inperson’s ignorance of human anatomy their bodies, a deaf person may initial-was not more or less than that of an ly translate her or his sexual impulsesaverage hearing person who has not and urges into behavior such as mas-had the benefit of education. turbation, viewing pornographic mate- rial including blue films, and sexualPlacement experimentation.There was considerable confusion Problems, when they arise, are usu-regarding the placement of the body ally due to impulsive behaviour, fororgans in all the groups from the illit- without language to channel frustra-erate to the literate. There was com- tion and aggression, a deaf adolescentplete confidence while drawing visible has fewer substitutes for direct actiondetails such as fingers, arms, and nails. (Oscar P. Cohen, 1978). The added bur-However, the inner organs — mainly den of increased anxiety combinedstomach and heart, and occasionally with the increased physical energy thatthe intestines — were generally hap- attends puberty creates a formidablehazardly placed. Schoolgirls who had challenge: how can the deaf adolescentattended anatomy class, and members channelise his or her physical drives?
27. Deprived of acquired information on acceptable and unacceptable social behaviour, the deaf must grope their way through adolescence. For a deaf person, peers are the adolescents address their identity main source of information on various issues by linking up with the ‘deaf issues including sexuality. However world’. Others deliberately avoid it and 26 only a small fraction of the deaf popu- develop aspirations to be accepted by lation comes together as a peer group. the ‘hearing world’. Both attitudes stem These are mainly deaf children who from a poor self-image and feeling of have attended deaf school or those who non-citizenship. They feel rejected bySexuality belong to deaf clubs or organisations. and rejecting of the hearing world. The other deaf are left without these Deaf adolescents generally experi- sources of information. ence the same physical changes, and Even among the deaf who have usually at the same time, as hearing access to information through groups, adolescents. However, the tasks of males seem to have better access to negotiating independence, sexuality information than females, who are and career identity are more difficult more cosseted. In our study, 61 deaf for deaf teenagers. They develop males had seen blue films, compare to strong dependency relationships, live 13 females. with marred physical self-images that Risk assessment and pleasure seek- impinge on sexual identity, and face ing behavior are opposed to each other. significant limitations as to career The ability to assess risk depends on choices (Andrea Marks and Michael deductive reasoning as well as the Cohen, 1978). existence of a conceptual framework Contrasting these findings is the that helps understand behavioral conclusion that the sexual experience options and their consequences. Thus of a disabled person is not significantly it is largely an ability acquired through different from any other person. Part of “If I was unemployed, then my wife could earn education and learning. For most deaf the evidence comes from a United money by selling sex. I people without access to education, States survey of disabled young people would not find it risk assessment abilities are low. Deaf between 12 and 18 years old (J. C. objectionable at all.” persons’ understanding and expression Suris, M. D. Resnick, N. Cassuto, 1996). happen at a more experiential level. Approximately 500 of the group studied Focus Group Impulsiveness in gratifying needs, had obvious disabilities while in 1,100 Discussion low awareness about norms of socially or so the disabilities were not apparent. acceptable behavior, limited sources of The researchers found that the dis- information, and a reduced ability to abled did not differ from their able assess risk contribute to the prevalence peers in the proportion ever having of casual and indiscriminate sexual intercourse, age of first sexual inter- relationships among the deaf popula- course, causing or having a pregnancy, tion. This above any other factor makes and contraceptive use patterns. them a group vulnerable to HIV/AIDS Parallel to this are the findings of as well as to other STDs. Indian studies conducted in the 1990’s by SECRT/FPAI, Goparaja (1992-93, 6.3 Development of self image Hyderabad), Savara and Sridhar (1994, and interpersonal relationships Maharashtra), and Sehgal et al and during adolescence published in Sexual behaviour and AIDS in India (Moni Nag, 1996). The T he hearing adolescent’s crises of trust, autonomy, initiative, and competence are more or less resolved study reported high incidence of pre- marital sex among youth, with the age of first sexual encounter between 15 by the time he reaches adolescence and 19 years. Respondents in the age (Erickson). Not so for the deaf child, for group 14-20 years knew about paid sex whom adolescence is fraught with and 5 had had paid sex. When directly delayed or incompletely resolved crises questioned whether they considered it (Oscar P. Cohen, 1978). Language dep- acceptable to have sex before mar- rivation adversely affects learning, riage, 102 respondent answered “Not conceptual skills and understanding of okay”. interpersonal relationships. Some deaf In the absence of specific studies
28. The sexual experience of Indian deaf adolescents is not likely to be significantly different from that of Indian hearing adolescents.that examine the sexual experience of and the ability to have children aredeaf adolescents in India, our study has linked. The menstrual period is desiredmade the assumption that the sexual because they have come to believe thatexperience of Indian deaf adolescents women are supposed to bear children. 27is not likely to be significantly different Absence of menstruation is equatedfrom that of Indian hearing adoles- with inability to bear children.cents. This assumption is based on the However, unmarried women are Menstruationfindings of the two studies cited above. unable to make this connectionHowever, the implications for the deaf between menstruation and child-bear-youth are severe and important, as his ing.or her sexual experience occurs Hearing mothers are reluctant toagainst a background of poor self- inform their daughters about menstru-image and poor understanding of inter- ation, either before menarche or at thepersonal relationships. time of it. The reasons for this may Translated into daily life, it means range from ignorance on their part tothat a deaf youth may not see anything diffidence. When the daughter is deafwrong with buying or selling sexual there is the added factor of limitedservices. Many see it as a legitimate means of communication, whichsource of employment. Equally of con- allows for little information to becern is the conclusion that a deaf ado- passed on to the deaf girl.lescent might perceive sexual inter- Though menstruation is traditionallycourse as only a physical act and not be regarded as inauspicious, it is alsoaware of its role in a relationship as an ‘proof’ to many families that the girl isexpression of emotions and feelings. now ‘marriageable’ and can bear chil- “If a friend of mine dren. In many parts of south India, this wanted to have sex with occasions a celebration. Ironically, this me, then I would not is sometimes the first time in her life charge him for it. But if 7. MENSTRUATION that a deaf girl receives attention, good someone I don’t know food and some new clothes. asks for it, why should I do it for nothing?N one of the females in the study had any knowledge of menstruationbefore they reached menarche. The Males from the south were aware of menstruation perhaps because of cele- bration associated with it. However, for Focus Group Discussionlevel of awareness and knowledge is the deaf girl, the celebration adds tosimilar through all the deaf groups. For her inner confusion — why is everyonemany of them, the onset of menstrua- so happy that she has begun bleeding?tion was surrounded by myth and What is the significance of menstrua-superstition, with little practical advice tion to them? In such social settings,or biological explanation. One woman the onset of menstruation also puts thewas told that menstruating is set off if a girl in the focus of family attentioncrow should accidentally come into briefly once again, contradicting thecontact with a female’s head. (“kavla slow isolation that usually happensshivla”, a colloquial term in Marathi). between childhood and adolescence.In the early body mapping sessions, The actual experiences of the firstsome women thought that menstrua- menstrual period were generally sud-tion was “an organ of the body”. den and traumatic. In most deaf women, the onset of All women could vividly recall themenarche evokes fear and apprehen- circumstances surrounding their firstsion stemming mainly from ignorance, menstrual period, which was charac-and also disgust towards the body terized by ignorance and the layingbecause of the inherent messiness of down of various menstrual taboos.menstruation. Most hearing women Many women recall that their mother,have negative feelings associated with sister, or friends showed them how tomenstruation and voluntarily maintain make a pad using strips of cotton cloth.silence about the matter. Although physical segregation was not Older women, through personal reported by any of the groups, allexperience, infer that menstruation women are informally taught avoid-
29. A deaf youth may not see anything wrong with buying or selling sexual services. Many see it as a legitimate source of employment ance behaviour: “Don’t tell anyone received one letter, which was a photo- about it”; and “Don’t touch boys”. copy of a similar one sent to the rich Women raised in rural areas believe girl. The rich deaf groom attracted 8 28 that physical isolation for 3–4 days is offers, including a divorcee and 2 phys- required as the women must ward off ically handicapped women. The mid- the ‘evil eye’ during menstruation. dle-class deaf groom got one response from a partially deaf girl. Analysis ofMarriage the responses indicated that they 8. MARRIAGE ranged from charity to calculated, bla- tant commercial interest. The most calculated response came 8.1 Finding a Marriage Partner from a middle-aged man from Andhra F inding a marriage partner for a deaf person is not easy. Of 87 respon- dents who answered this question in Pradesh whose marriage, he claimed, had been annulled in a day. His tightly crammed inland letter described a dil- our study, 26 said that they could not ettante and man of the world, with a find a partner of same ‘caste’, 30 more doctorate in criminology, law, social said they were still searching, and 25 sciences and literature, and “vast expe- said that they were still studying. Only rience in handling blind/deaf/dump 4 females and 2 males said that they [sic] as a government officer in a proj- did not intend to marry. ect”. However towards the end of his urgent letter, he stated explicitly: My 34-year-old deaf daughter wants to get married. We have been looking for a No DOWRY! No Demand!! boy and have registered her name in var- Only a request to support me to have ious marriage bureaus run by a deaf an independent income. Because I am organisation. A man from a deaf organisa- not satisfied with my present income. tion approached her saying that he would Open to settle in a mutually agreeable help her get married. He showed her a place provided you help me with place- few photographs of boys out of which she ment in business or industry. I was sweeping the selected one. After this there was no word floor. Another girl came from him for several months. One day, There seemed to be an assumption and told me there was she got in touch with him, and he asked that a deaf bride would have nothing to blood on my skirt. Sister her to meet him after office hours. He gave me a cotton pad invited her for a cup of tea and took her to offer to a marriage and so should con- and a raw egg to eat. a lodge and closed the door of the room. sider herself lucky to get any groom at She called my mother. My daughter was scared and ran. He ran all. Many replies hinted openly that a behind her and tried to explain to her that My parents came with “sweetener” — either a place to stay, or he did not mean anything and that he was flowers and sweets. sorry. a business opportunity — would be They took me home to Excerpts from a letter by the father needed if they were to consent to marry the village and had a big of the deaf girl to a deaf women s the deaf girl. The letter below came celebration to which organisation from a clerk in Bhubaneshwar: lots of people were In order to study society’s response invited. I have a proposal to implement export to a deaf person looking out for a business as a merchant exporter with- Focus Group spouse, Project Signpost placed four out capital dealing 6 crores by IRREV- Discussion advertisements in the matrimonial OCABLE letter of credit. I shall send columns of the Times of India. Two of you a copy of the relevant papers. If you have doubt please clarify with the the ads sought grooms for deaf females Foreign exchange Department in the — one of them was a beautiful and rich bank. I really IMPLEMENT this after I girl; another was a nondescript, marry and settle in one place. . .You employed, middle-class woman. Two have mentioned in advertisement about your daughter since birth totally other ads advertised deaf men, one deaf. Still I accepted because I have from an affluent, princely background human being nature and worship of and the other from a middle-class set- God Lakshmi, Vishnu, Ganesh, ting. Maheshwar. Rich candidates received more The most compelling reason some responses than others did. The affluent respondees were able to furnish for deaf girl received 28 offers of marriage, being considered as grooms was that while the middle class deaf girl they would take the girl to a hospital to
30. People assume that a deaf bride would have nothing to offer to a marriage and so should consider herself lucky to get any groom at all.“cure her deafness”. One, after cialised training, marriage is relativelyexplaining that his poverty was due to easier though the responsibility stillhis business misfortunes over the last rests with the boy’s parents. With socialfew years as a cable operator and acceptance foremost in mind, such 29entrepreneur, added that he was parents look for a hearing match, whoexpecting a United Nations job soon, they regard as having higher social sta-after which he would make arrange- tus and also being better suited to pro- Marriagements to give the girl whatever med- vide care and support for the boy.ical treatment she wanted. However, to compensate for the boy’s handicap, they will generally relax My aim is to first of all settle with the some criterion, such as the girl’s caste concerned girl and immediately follow up for better treatment in America. or family’s economic level. A girl from Since my brother is in South America, I a poorer family would be considered if can proceed to that area for better the boy was deaf. treatment. My cooperation with the It is families from the lower and concerned girl will be everlasting. . . Please see that the girl s problem does middle income groups, whose ability to not become known to people. offer incentives is low, that face the greatest problems in negotiating a There was even a response from a marriage partner for their deaf off-charlatan, a self-styled mystic, yogi, spring.gemnologist, magnetotherapist andsage from Sholapur, Maharashtra, who 8.2 The choice of a marriage One matrimonialoffered to travel to Mumbai and spend partner: Deaf versus hearing applicant, after explaining that his90 days casting the girl’s horoscope andthen working out a cosmic plan oftreatment for her — at no cost: D eaf people believe that deaf-deaf marriages are more likely to be successful because the partners would poverty was due to his business misfortunes understand each other better and be over the last few years I am quite confident of completely cur- able to communicate with ease. as a cable operator and ing your daughter and restoring her entrepreneur, added that hearing within a short period, provided Parents of deaf people however, he was expecting a the whole family in general and the girl believe that it would be more pragmat- United Nations job soon, in particular whole-heartedly accept me ic for a deaf person to marry a hearing after which he would as a guru to start with! person who would be better able to make arrangements to Why do most suitors seem to expect provide care and support when need- give the deaf girlan added incentive when the candidate ed, as well as be an interface with the whatever medicalis a deaf girl? Meera Sikand, Toronto ‘hearing world’. Most deaf people treatment she wanted.based Vice-Chairwoman of the Cana- believe that a deaf-hearing marriage isdian Association of Independent Living virtually doomed, because of the hear-Centers International Committee, says ing spouse’s inability to communicate(Network 1999) that in India “women with the deaf spouse. Underlying thesewith any disability never learn about viewpoints is also the fundamental dif-reproductive health because they are ference in the deaf person’s self-per-considered to have no marriage ception and the hearing person’s per-prospects. They are denied education ception of the deaf in India. To a hear-and are not seen as full human beings. ing person, the deaf person is a burdenAny imperfection that compromises a who will never stand on his or her feet,woman’s ability to take care of her fam- always need care and support. Such aily means she is out of the marriage view denies the deaf person his or hermarket”. individuality and independence, sup- Thus it would appear that an added posedly in their own best interests.attraction such as being affluent is The deaf person, resentful of therequired for the deaf individual to be hearing world’s impositions and yetconsidered as a marriage partner. In dependent on them, sees marriage to athe case of deaf males from upper class hearing person as the ultimate surren-families who have integrated well into der of individuality. However, there isthe hearing environment have good no evidence to suggest that either kindcommunication skills as a result of spe- of marriage is inherently superior or
31. “Women with any disability never learn about reproductive health because they are considered to have no marriage prospects.” more sustainable. maternal health. This leads often to the The main problem in a deaf-hearing familiar situation of dependence tinged marriage, according to 56 respondents, with resentment. Over time, the con- 30 is that the hearing person would soon trol of the family unit, and key deci- get bored with the deaf and have an sions shifts from the deaf couple to the affair with someone else, probably a parents in law. Not only does this hearing person. Another significant increase the number of interactionsContraception problem area was identified as com- between the deaf couple and hearing munication with in-laws. The only adv- people around them, but it also under- antage of a marriage between a hear- mines the deaf person’s ability to cre- ing and a deaf person seems to be get- ate a family unit that is truly self- ting help in practical aspects of daily reliant. life. Males consider it beneficial — The situation often changes for the from their point of view, children might better if hearing children are born. As be normal and also household respon- these children grow up, they learn to I want to marry a deaf sibilities would be shared. Deaf mar- handle responsibility for their parents girl this time. My first ried to other deaf did not see this as an from an early age, and become their wife was hearing, my advantage, feeling that the hearing parents’ link with the outside world. Of family had arranged this would take responsibility for the deaf course, if the deaf couple should pro- marriage. She was person and soon would begin looking duce a deaf child or children, then better educated than I was; she was SSC pass down upon them. their woes will increase dramatically. and came from the Out of the 36 married couples we They will face all the issues that centre village. When we got interviewed, 23 had deaf partners; 13 around the upbringing of a deaf child, married we lived were married to hearing partners. but will be far less informed about the together with my brother possible choices than a hearing person and his family. From the 8.3 Deaf-deaf Marriage might have been. beginning she was not very happy, and kept to herself. She hardly T he deaf perceive several advan- tages in marriage with a deaf per- interacted with me or son. While they are single, they expect that good communication is the chief 9. Contraception others in the family. One day, she went away to her mother’s house and advantage. After marriage, they feel that better understanding of each other is the main benefit. However, only very F orty respondents in the study, of whom 24 were unmarried, said that they knew about condoms and oral never returned. A little later, she asked for a few deaf couples will be self-reliant pills as a method of contraception. divorce. That is why this enough to live independently, and most Males in various focus group discus- time I will marry only a of them continue living with their in- sions reported using condoms and the deaf girl. At least she laws, either the boy’s parents or the withdrawal method in pre-marital rela- will be able to girl’s. This slowly starts a new process tionships for avoiding unwanted preg- understand me. of interference, stress and loss of self- nancies. Their main sources of infor- Personal sharing respect. mation were either peers or older deaf Responsibility issues such as people who passed on their personal employment, financial support and experiences. It must be borne in mind child-rearing are handled with help that peer-to-peer information sharing from hearing members of the family, happens only with deaf people who typically the parents-in-law. Hearing have access to other deaf people, either in-laws find it difficult to adjust to their through schools or associations and deaf daughter-in-law, and simply clubs of the deaf. As the vast majority of expect the same behaviour from her as India’s deaf do not fall into this catego- from a hearing. However, they are ry, it must be assumed that knowledge unwilling to put in the effort required of contraception is almost completely to communicate and understand her. absent among most Indian deaf people. On the other hand, the deaf couple Compared to males, unmarried simply have no option but to rely on women did not seem to be aware of their hearing family members when it various contraceptive techniques. A comes to important issues such as deaf woman does not get any instruc- child-rearing, family planning, and tion in contraception at the time of her
32. The main problem in a deaf-hearing marriage might be that the hearing person would get bored with the deaf and have an affair with someone else, probably a hearing person.marriage. Women in a focus group ses- illegal, forbidden by section 377 ofsion said that contraception is usually Indian Penal Code (IPC), which con-initiated after the birth of the first child, demns ‘sex against the order ofand that too upon the advice of other nature’. Although worldwide this defi- 31hearing people, either her in-laws or nition is being reviewed, India stillthe health professional she interacts adheres to this antiquated viewpoint,with. Hearing people around the deaf as a result of which homosexuals are Masturbationcouple fear that the couple may have a victims of considerable harassmentdeaf child. After the first child is born and discrimination. In general, thishearing, the deaf couple is made to use makes them a hard-to-reach popula-contraceptives so as to avoid the risk at tion. In the age of HIV/AIDS, they alsothe second child being born deaf. constitute a vulnerable population, andWithin a marital relationship, the onus reaching them with life-saving infor-of contraception falls upon the woman. mation becomes specially important.The most commonly used method Our study notes that the Indian gay One person married areported was the IUD . is probably as difficult to reach for pur- hearing partner because poses of delivering health and sexual he thought that it might safety messages as the average Indian increase the chances of having a hearing child. 10. Masturbation deaf person. Just as we were only able to work with organised groups of the Focus Group DiscussionD eaf people are generally aware of masturbation (76 respondents),though more males than females deaf, gays can also be accessed only through organisations. At the moment, Bombay Dost magazine is the best Amit and Saroj, bothseemed to be familiar with it. Two known gateway into the world of the deaf, married out of lovegroups referred to it as ‘sex with the gay. Yet they themselves face formida- and now live with Amit’shand’. The practice is more common ble difficulties in evoking a response parents. He is illiterateamong males than females; also, males from their gay readers. For example, in and unemployed, and sohave a stronger pleasure association a risk assessment study the magazine is she. As a result, they are entirely dependentwith masturbation than females. conducted only 150 readers replied out upon his parents for Deaf people share as many irrational of nearly 2000, over a period of 18 even their financialbeliefs about masturbation as hearing months. needs and subsistence.people do, ranging from its debilitating The deaf people in our study seemed Amit’s father has beguneffect to its impact on potency and the to be aware of homosexual behaviour: sexual relations with hisability to produce children. out of 71 respondents who were famil- daughter-in-law. During a Focus Group Discussion iar with the term, 70% were male and Everyone in the family iswith single women in Chennai, it 30% female. Of the males, about 40% aware of it, but no-oneemerged that the participants were not had studied in residential schools. feels capable of tacklingsure what masturbation was, and had As noted earlier, the deaf are cut off the matter. Amit feelsnot been aware that a woman could from a clear awareness of social norms powerless, as does Saroj.give herself pleasure through touching of acceptable and unacceptable behav-herself. They had also not been sure iour that are normally acquired Focus Groupthat this was acceptable behaviour. through communication within the DiscussionPart of the ignorance was biological — family and society. Free of this ‘con-they were not aware of the clitoris, or tamination’, they are generally non-other erogenous parts. As their interest judgmental about a homosexual orien-grew, they requested that a special ses- tation, and accept it as yet anothersion be conducted to teach them some ‘event’. In focus group sessions inways that a woman can masturbate. Delhi and Chennai, there were both disclosures as well as discussions of 11. Homosexuality homosexual behaviour. Based on these, it is not possible to arrive at anA ccording to Ashok Row Kavi, gay activist, around 50 million Indianmales practise homosexual behaviour. estimate of prevalence of homosexual- ity among the deaf; however, it is possi- ble to infer certain conclusions aboutHomosexuality is defined as an “unnat- how a low-communication environ-ural act” in Indian law and considered ment may increase the deaf person’s
33. Participants were not sure what masturbation was, and had not known that a woman could give herself pleasure through touching herself vulnerability due to high-risk sexual they have observed everywhere. behaviour. During the project, STDs acquired the sharp edge of reality only when the 32 12. STDs group was finally shown transparen- cies of the actual diseases. O f the respondents, 29 knew that STD referred to sex-related condi- In the absence of studies of deaf sex- uality, we found that hearing KeySTD/HIV/AIDS tions, but 113 respondents did not Informants generally saw the deaf as know the term. The deaf are aware of not capable of high risk behaviour paid sexual activity, and acknowledge its because of their handicap, though the I was married for three prevalence among the deaf population. Of reality might be quite different. For years to a deaf woman. the groups interviewed, 23 knew about instance, one Key Informant said that We lived with my female commercial sex workers, while 15 the deaf are careful not to acquire any parents. My job was respondents knew of male commercial sex physical problems in addition to deaf- temporary and did not workers. The respondents who had heard ness and thus would take extra care pay well. After 3 years of marriage my wife of male sex workers were above 21 years, not to get STDs once the word spread became pregnant for the and of them 12 were male and 3 females. through their network. She added that first time. My mother These 3 females have practiced commer- such information would pass rapidly found out about this. One cial paid sex. through the network of deaf Indians. afternoon without telling For a deaf person with limited edu- Our research does not lead us to agree anybody she took my cation and low career opportunities, conclude that the deaf are particularly wife to the doctor and commercial sex work is far from being careful to avoid falling ill, or that there got her aborted. Both of high-risk behaviour. Instead, it is exists a strong deaf network for carry- us were very upset viewed as a viable livelihood option ing vital information. about it but could not do and one that any deaf person needs no Another Key Informant guessed that anything. Even after 10 special qualifications for. As there is no a deaf person might avoid paid sex years I feel bad when I moral value or social sanction attached because of the difficulties of negotiat- remember this. If I were not deaf it would have to such behaviour in a deaf person’s ing with a hearing sex worker. Once never happened to us. mind, the notion of a violation of digni- again, this seems logical but may not ty, personhood, or sexual rights does take human sexuality into account. Our Personal sharing not cross the thoughts of any of the per- overall belief is that the deaf person’s sons involved, from the victim to the sexual experience is probably compa- initiator or client. A deaf person may rable to a hearing person’s in quantity ‘take advantage’ of another deaf per- as well as diversity. son’s need for an income and promote Masturbation is all right, sex work as option. there is nothing wrong Deaf people understand Sexually Transmitted Diseases (STDs) as the 13. HIV/AIDS with it. But if a person does it often, then he should drink lots of milk and eat good food, more old-fashioned VD or Venereal Disease. However, they do not seem to know the full form of VD either. With T he word AIDS is familiar to most deaf people. They associate it with disease that is incurable and fatal. otherwise he will the low level of language skills that They also seem to understand that the become weak. may be observed among deaf people disease is somehow linked with sex, who have not attended a good school but have no further details. A total of 74 Focus Group Discussion for the deaf, specific medical terms are (49%) respondents out of 183 reported likely to be baffling and meaningless. that they had heard about AIDS. Fifty of Fort a particular phrase to acquire these were males and 24 females. Out meaning, it needs an anchor in either of these 23.6% had studied or were personal experience or something studying in residential school setups. directly observed. Thus for those who 61.6% were males and 32.4% were have not ‘experienced’ STDs directly in females. Out of 37 who had attended some way, either through a close residential school, 14 had heard about friend’s experience or personal infec- AIDS. tion, the discussion remains theoreti- Given the low awareness of STDs in cal. She or he may connect the “STD general among the deaf, it is not sur- clinic” with “STD phone booth”, which prising that the deaf do not understand
34. For a deaf person with limited education and low career opportunities, commercial sex work is far from being high-risk behaviour.HIV to be a sexually transmitted infec- deaf is greatly underscored by theirtion. Less than one-third of those ques- deep ignorance about issues relating totioned were able to correctly identify HIV/AIDS and other STDs.the main modes of transmission — 33blood infected by the AIDS virus;through sharing infected needles orsyringes; and from infected mother to 14. Vulnerability Vulnerabilityunborn child. Out of 109 males, 36 14.1 Implication ofwere aware of HIV transmissionthrough infected blood, while out of 71 sexual vulnerabilityfemales 16 were aware of it. Again, 23out of 109 males were aware that HIVcould be spread through sharing I n all deaf groups within the study, there were numerous reports of incestuous relationships, abuse andinfected needles or syringes, while 16 even rape. These were disclosed some- Jamal, 54 and deaf, isout of 71 females were aware of it. times as personal experiences, and generally regarded as a Roughly equal numbers of people sometimes as incidents that had hap- ‘counselor’ for youngheld misconceptions about how HIV pened to someone they knew well. In deaf people in his city.spreads, or claimed not to know. For all cases, the narration was matter of He admits having enjoyed frequent sexinstance, under 22% believed it can be fact, and there was usually an absence with sex workers, hastransmitted through kissing or by hold- of emotional undertone. The manner had several homosexualing hands with an infected person, in which the revelations took place encounters, and has alsowhile about 35% claimed they did not were consistent with the study’s find- enjoyed sex withknow. ings that the average deaf person has a children. He disclosed In general, males seemed to have poor understanding of permissible and these facts without anymore misconceptions than females, as forbidden behaviour. Frequently, the guilt nor pride, asthe table on this page shows. absence of any specific yardstick for matters of fact. Because The highest level of misconceptions judging abusive behaviour warped the of his age and sexualwas within the 21-30 years age group. reactions to it. In at least one instance, experience, Jamal isTransmission through infected blood it was not clear to the victims that there sought after by young deaf people for advicewas better known than transmission was anything wrong with the behav- on a range of sexualthrough infected needles. Focus group iour at all. problems from unwanteddiscussions revealed a high level of Another reason for the distortion of pregnancy, abortion,misconceptions about HIV/AIDS and reactions to abuse could be that, in a STDs, and issueshow it spreads. world where she receives little atten- concerning Although in general, deaf people had tion from hearing members of her fam- relationships. Hisnot come across any stories of other ily and in general feels cut off from awareness of sexualdeaf people with HIV or AIDS, a meaningful relationships, any attention health is low, and theMumbai key informant knew of two directed to the deaf child, even when it quality of his advicechildren who had been born infected takes the form of abuse, may be seen as would normally bebecause their parents were infected; positive. based on his own experiences.and another case of two adolescents Hearing families coping with incestwho had contracted HIV after having are marked by a distortion of relation- Focus Groupsexual relations with a foreign tourist. ships. The essential feelings of trust, Discussion In summary, it may be presumed sharing and safety are missing and inthat the behavioral vulnerability of the their place is a feeling of isolation, fear Modes of transmission Males% Females%Holding hands with an infected person 81.3 18.8Kissing an infected person 99.3 20.7Blood transfusion from an infected person 69.2 30.8From sharing needles with an infected perso 59.0 41.0
35. When the abused child is deaf, she already has an existing inability to express a personal point of view. Abuse adds to her helplessness. and secrecy. When abuse happens minated’ by an understanding of the within the family the victim is general- do’s and don’ts of hearing society, they ly the scapegoat and is made to feel are also often unable to distinguish 34 bad. The victim usually lives with a between blood relatives, friends and sense of isolation and feeling of being mere acquaintances. Thus they are cut off from nurturing contact with oth- vulnerable through not knowing which ers. Such isolation, however, is already parts of their bodies may be touched byVulnerability part of the deaf child’s normal experi- whom. They are vulnerable through ence of family life. When abuse hap- having a poor sense of personal priva- There is this man who pens within such a relationship, it may cy and boundaries. comes to our house very increase her loneliness, but more than Respondents in the age group 14–30 often. Six months’ back I that, it deepens the mistrust and fear said that it was alright to have sex with was alone in the house that she feels for the entire hearing one’s brother or sister, domestic ser- when he came. He world. To a deaf person, abuse vant, driver or with a ‘friend’. One asked me to make tea becomes is one more aspect of victim- female thought it was okay to have sex for him. He forced me to ization along with the many others with uncle. 24 respondents were not drink half of his tea. faced by her because she is deaf. sure with whom one could have sex. After drinking that tea I When abuse happens from outside Seven females reported being sexu- started to feel giddy. the family and goes unreported the vic- ally abused. The main offenders have When I woke up I found tim usually has a feeling that her own been father, uncle and brother, while that there were no clothes on my body and I pain is not important enough for the outside the family the servant and driv- was alone in the house. family to respond to. There is an er were the main culprits. Abuse is I told my parents about underlying feeling that the family can- reported as having occurred between it, they told me to keep not be relied upon for support and the ages 21 and 30 years, though this quiet. understanding. The victims of sexual may not be an indication of actual Focus Group abuse often believe that they are to occurrence. We believe that under- Discussion blame for abuse. It has happened to reporting may also have happened in them because they are ‘bad’. When a the 14-20 age group due to biases and deaf person experiences abuse these communication difficulties of the inter- feelings will be intensified. preters and teachers who helped When children are abused, their administer the questionnaires. A person can get ability to say no and set limits are through mosquito bites, severely damaged. When the abused dirty food, sex with a goat, babies, eating child is deaf, she already has an exist- ing inability to express a personal point 15. Conclusion meat that has HIV, traveling in an overcrowded bus, dirty of view. Abuse adds to her helplessness by making self-expression punishable. As noted earlier in this study, deaf T he exploration and its findings pre- sented in this document must be seen as a first step in a very long jour- needles, sharing a people perceive their childhood as ney. For the team of Project Signpost, drinking cup with an infected person, and spent in isolation, with difficulties in the two years of the project have been having sex with an HIV understanding and being understood. a period of great introspection and per- positive person. If a They feel that their parents do not treat sonal understanding. The most signifi- parent is HIV positive, them at par with their other siblings. cant area upon which the illumination the child will be born Due to these feelings, they gradually fell is not the sexual health issues that with the infection. The drift away from meaningful contact face Indian deaf youth but on the tem- attitude towards HIV with their families. This sense of isola- perament, attitudes and preconcep- positive persons is very tion and withdrawal already being tions that are brought to the study by negative. experienced by deaf persons makes hearing researchers. And it is upon Focus Group them easy targets for sexual abuse, as those insights that this concluding sec- Discussion their helplessness and inability to com- tion dwells. municate are already well known with- We do realise that the deaf in India in the families. are a long distance away from that per- Further accentuating their vulnera- fect day when their dilemmas and bility is their poor understanding of predicaments will be studied and relationships and personal privacy. Not understood by researchewrs from their only is the average deaf child ‘unconta- own communities, and answers
36. evolved from within the community only perceive as their sense of commu-rather than from outside it. Until then, nity and understanding evolve. Thata second-best situation prevails, one in evolution depends, for the moment atwhich well-meaning hearing resear- least, on the commitment and involve- 35chers will enter the fragile domain of ment of concerned and caring hearingthe deaf with their data gathering tools. people who are willing to undertake aThose researchers will also bring with daunting task. Conclusionthem an armoury of assumptions, most What is that task?of them misconceived and erroneous. It is to find ways to enter the world of We had to undo many of our the deaf as a guest, upon invitation, andassumptions along the journey. It is dif- understand and accept the terms onficult to understand, and later accept, which their lives unfold.that a fellow human being’s world can It is to tread gently, and find ways tobe so dramatically different from our empower, rather than offer packagedown that our rules simply cease to solutions that did not emerge fromapply. The way in which a deaf person their communities.perceives, comprehends, assesses, It is also to resist the call for quickinforms herself and takes decisions are results and swift advances. Behaviourthe result of a pattern of social and change among the deaf will only follow Some young girls whofamilial interaction learned from the deeper understanding. That under- had dropped out ofdays of childhood. No individual can standing will only be the result of an school joined a deafreverse that. evolutionary and revolutionary com- club. The older women The irony is that despite living in a munication. Such progress will not be there took advantage ofworld whose textures and flavours are made in a day, but will be the work of the fact that the girls were looking for work.so different, the deaf person is vulnera- many hands and minds working in They invited them homeble in the same ways as any other concert over many years. for an informal ‘meeting’,human being. The risk is one they will gradually developed a friendship, and began meeting frequently to view pornographic films. They then introduced them to their hearing male friends and asked them to have sex with them in return for some money. These girls fell into the trap of easy income. Key Informant
37. Bibliography 1. Research on family problems in India: Issues and implications, Volume II, TISS Unit for Family Studies, 1991 2. A Mentally Handicapped Child in the Family: A Guide for Parents: Mary36 McCormack, 1978; Constable & Company 3. Disabled have many needs for contraception; Network; Vol. 19 No 2, Winter 1999. 4. Why we need to look into sexuality issues; National Institute of Virology Journal; Ashok Row Kavi, Apr-1999, 2;39-43 5. India’s Pioneer: Ashok Row Kavi; Internet interview (April 1999) by Perry Brass. 6. Curriculum: Content and changes; by Sister M. Kirby, Editor, assisted by Peter Blackwell. Volta Review Vol. 82, No., Oct/Nov 1980, ISSN 0042-8639. Becoming a social being; Mary D. McGinnis, Claire Davis Orr, and Jane Moore Freutel Life skills and experiential curriculum: Patricia Bryant Thinking and Curriculum: Jeffery R. Cole Deafness and Adolescence, Arthur I. Neyhus & Gary F. Austin; The Volta Review, September 1978, Vol. 80 No 5, The Deaf Adolescent: Who Am I?; Oscar P. Cohen Developmental Processes of Adolescents: Andrea Marks and Michael I. Cohen Communicating with the world-at-large; Wilbert L. Pronovost Reading and writing skills and the deaf adolescent; Kathleen F. Crandall 7. The Families of Hearing-Impaired Children, Albert T. Murphy, Editor; The Volta Review, Volume 81, No. 5 September 1979 8. Members of the Family: Sisters and Brothers, Albert T. Murphy 9. Disabled have many needs for contraception, Network; Vol. 19 No 2, Winter 1999. 10. Disability and HIV; AIDS Action: Asia Pacific Edition Issue 35 April–June 1997, 11. Socialization and personality development in hearing child of deaf parents; Blaskey P. F.: Published doctoral desertion, Temple University 1984. 12. Factors predictive of the development of reading and writing skills in orally edu- cated adolescents: Ann E. Geers and Jean S. Moog 13. Sexual Behaviours and AIDS in India: Moni Nag 1996. 14. Sarvekshana, 61st issue, Vol XVIII, No 2, Oct–Dec 1994 (National Sample Survey Organisation, Dept of Statistics, Ministry of Planning and Programme Implementation, Government of India)
38. Annexure 1Number of person of age 5 years and above with Hearing Disability (HD)(Per 100,000 persons of age 5 years and above for each sex) RURAL URBAN Male Female Persons Persons with Male Female Persons Persons with HD (’000s) HD (’000s) 37Andhra Pradesh 657 662 660 284 476 526 501 81 Deaf CensusAssam 358 273 319 66 410 311 364 8Bihar 335 177 260 168 241 182 215 22Gujarat 352 389 370 89 293 344 317 41Haryana 477 460 469 50 423 338 384 14Himachal Pradesh 1601 672 1108 44 233 242 237 1Karnataka 603 583 594 162 346 318 332 42Kerala 513 501 506 98 314 436 376 28Madhya Pradesh 479 421 452 201 339 220 282 39Maharashtra 554 503 529 225 319 432 372 103Orissa 765 632 698 170 486 621 548 21Punjab 466 398 435 55 275 179 230 12Rajasthan 329 207 271 80 204 188 196 17Tamil Nadu 722 724 723 238 483 553 518 91Uttar Pradesh 307 266 288 276 231 220 226 56West Bengal 633 502 570 240 341 386 361 62All-India 498 435 467 2573 325 335 339 669Source: National Sample Survey Organization (1991)
39. Annexure 2 PREVALENCE AND INCIDENCE OF HEARING DISABILITY Per 1,00,000 persons of age 5 years and above obtained from NSS 36th and 47th rounds 36th Round (July–Dec 1981) 47th Round (Jul–Dec 1991) 38 SECTOR MALE FEMALE PERSONS MALE FEMALE PERSONS P R E V A L E N C E RURAL 595 510 573 498 435 467Prevalence and Incidence URBAN 386 395 390 325 355 339 I N C I D E N C E RURAL 20 18 19 16 14 15 URBAN 14 15 15 11 14 12
40. Annexure 3PROFILE OF CORE GROUPS SELECTED FOR FOCUS GROUP DISCUSSIONSBombay Foundation Delhi Foundationof Deaf Women of Deaf WomenMumbai This is a mixed group of mar- Delhi This is a mixed group with mar-ried and unmarried women. ried and unmarried women. 39Age range 20-35. Age range: 18 to 25 yearsEducation up to primary level. Education Primary to secondary level.Economics: Lower middle to upper Economics: Lower to middle class. Core Groupsmiddle. Some are self-employed in Most participants either work in thisactivities like tailoring, and working for organization or attend classes (com-the BFDW. A few do manual labour at puter, typing or English language).factories. Language: Hindi and English. All com-Language: Most of them understand municate with each other in sign lan-English and Hindi, but sign among guage.themselves.Religion: Hindu and MuslimShruti School for the Deaf St. Louis CollegeMumbai This is a mixed male and for the Deaffemale adolescent group. Chennai Mainly unmarried maleAge Range 18 to 20 years. youths.Education Higher secondary. Age range: 17 to 27 yearsEconomics Lower upper to Upper Education: Undergraduate level. Mostupper class. are from rural southern India, studyingLanguage Languages of instruction in on scholarship.school are Hindi, Gujarati and English. Economics: Lower middle to Upper mid-Though signing is not allowed, stu- dle.dents communicate among themselvesin sign language.Delhi Deaf Friendship Club Sheltered Workshop for AdultDelhi This is a mixed male and female Deaf Womenyouth group. Chennai A female unmarried group.Age Range 21 to 30. They have very little contact with outsideEducation: Higher secondary world as they live in strict residential insti-Economics: Lower upper to Upper tution.upper. Most are well supported by their Age Range: 20 to 35 years.families or hold secure jobs. Education: IlliterateLanguage All understand English and Economics: Lower-lower to Uppercommunicate in sign language. lower. Most girls here come from poor families. They live here and earn money by doing needlework, visiting their families once a year. Language: Only Tamil. They commu- nicate with each other in sign lan- guage.
41. Annexure 4 Profile of Key Informants Deaf: Totally 7 deaf key informants were interviewed informants were interviewed in depth. Their profes- in depth. All are founders or group leaders of various sions ranged from social work, interpreting, educa- deaf associations. Being deaf themselves they have tion and psychology to audiology, and also included 40 experience working with deaf-related issues, though people with personal commitment based on having a most have worked only in urban settings. deaf offspring. All the key informants have worked Hearing: Among hearing professionals, 19 key only in urban settings.Key Informants # DEAF STATUS EXPERIENCE COMMUNICATION NATURE OF WORK WITH DEAF WITH DEAF 1 Deaf 2 years Sign language + President of deaf group lip-reading with hearing (English) 2 Hearing 10 years Total communication Works at the National Institute of the Hearing Handicapped 3 Hearing 15 years Oral Educator 4 Hearing 16 years Total communication Interpreter, counselor in US, India for the deaf 5 Hearing 3 years Total communication Social worker 6 Hearing 40 years Oral Educator of deaf 7 Hearing 35 years Total communication Rehabilitation of deaf youth; Runs Deaf Youth Foundation 8 Deaf 12 years Signing with deaf President of a and oral with hearing. deaf organization 9 Hearing 40 years Signing President of a deaf organization 10 Deaf 7 years Signing and speech Works with National Institute of the Hearing Handicapped 11 Hearing 25 years Oral Founder and director of a deaf school; Audiologist 12 Hearing 30 years Speech Educator; runs marriage bureau for deaf 13 Hearing 40 years Signing Interpreter; works in national organisation for the deaf 14 Hearing 20 Speech Clinical Psychologist 15 Hearing 20 years Speech President of national deaf organisation 16 Deaf 30 years Signing and speech Organizing national sports for deaf 17 Deaf 35 years Signing and speech Founder and trustee of deaf women’s organisation
42. # DEAF STATUS EXPERIENCE COMMUNICATION NATURE OF WORK WITH DEAF WITH DEAF18 Hearing 10 years Signing Founder of deaf friendship clubs; Interpreter, teacher 4119 Deaf 30 years Speech Gen. Secretary of deaf organisation Key Informants20 Hearing 22 years Total communication Trainer for deaf21 Hearing 5 years Oral President of deaf women’s organisation22 Hearing 18 years Total communication Educator23 Deaf 4 years Oral Secretary, deaf women’s organisation24 Deaf 20 years Signing Office bearer of deaf women’s organisation25 Hearing 40 years Signing, oral Educator; started sheltered workshop for deaf women26 Hearing 5 years Speech and gestures. In charge of sheltered workshop for deaf women.
43. Annexure 5 Abbreviations AIDS . . . . . . . . . . Acquired Immune Deficiency Syndrome AYJNIHH . . . . . . Ali Yavar Jung National Institute of the Hearing Handicapped 42 DDFC . . . . . . . . . Delhi Deaf Friendship Club DFDW . . . . . . . . Delhi Foundation of Deaf WomenAbbreviations FGD . . . . . . . . . . Focus Group Discussion HIV . . . . . . . . . . . Human Immunodeficiency Virus KABP . . . . . . . . . Knowledge Attitude belief Practice MPTC . . . . . . . . . Multi Purpose Training Centre STD . . . . . . . . . . Sexually Transmitted Disease VD . . . . . . . . . . . Venereal Disease VRC . . . . . . . . . . Vocational Rehabilitation Centre Address correspondence to Project Signpost, 105A Sunswept, Lokhandwala Complex, Andheri West, Mumbai 400053. e-mail: firstname.lastname@example.org