Deaf Children and Their Families

Sarah Beazley, Michele C. Moore

• Publisher: David Fulton Publishers
• Year: 2013
• eBook ISBN: 9781134087457
• Edition: 1
• Topic: Education
• Subtopic: Education General

This book is about the importance of placing the views of families with deaf children at the front of policies and practices which impact on their lives. It concerns such families in a variety of different situations and circumstances, facing a whole range of issues, many of which are equally relevant to children with other impairments and their families. The aim of the book is to raise awareness of how enabling environments can be provided for deaf children and their families.

Chapter 1
Deaf Children, Their Families and Professionals

What this book is about

This book is about the importance of placing the views of families with deaf children at the front of policies and practices which impact on their lives. It concerns such families in a variety of different situations and circumstances, facing a whole range of issues, many of which are equally relevant to children with other impairments and their families. The aim of the book is to raise, awareness of how enabling environments can be provided for deaf children and their families. It is about taking disability out of their experience of hearing impairment.

Background

The 1994 conference proceedings, 'Keeping Deaf Children in Mind', present some of the dilemmas raised when we think about the situation of deaf children and their families (Laurenzi and Hindley, 1994). One debate the editors consider is 'Are deaf children disabled, should we think about their development in terms of what they can't do? Or are deaf children provisional members of the Deaf community and so different rather than disabled?' (1994). These are important questions for anyone connected with deaf children and their families and we felt we should spell out our perspective right at the beginning of this book.

We feel that deaf children are, by virtue of hearing impairment, 'different' from children who are not deaf. One way in which deaf children are different from their hearing peers is certainly in their right to prospective membership of the Deaf Community, and we agree with Laurenzi and Hindley that it is essential to recognise this important dimension of a deaf child's identity from the outset. We have a different way of looking at the question of whether deaf children are disabled, however. In this book we will argue that deaf children very often are disabled. But in a slightly different vein from Laurenzi and Hindley, we think disability has absolutely nothing to do with what deaf children themselves can't do. We wholeheartedly reject any outlook which views deaf children's development 'in terms of what they can't do' (1994). We argue that deaf children can be disabled; we do not however, think that deaf children have disabilities. In our view, deaf children have hearing impairment, and other people enable or disable them and their families, depending on how they behave and what values underpin their attitudes.

Ideas about the way in which the experience of disability is socially produced have been developed by disabled writers themselves, notably Oliver (1990, 1993a), Finkelstein (1993) and French (1993). This theme is most usefully applied to an understanding of the situations of deaf children and their families and enables us to see that barriers to inclusion are not within the child. Hearing impairment is not the central problem which faces deaf children and their families. We view disabling barriers and oppressive environments which undermine deaf children's chances of an ordinary and fulfilled life as the major problem. Thus we talk about deaf children as disabled by other people who make life difficult for them and their families; disabled by assessment procedures which fail to pick up that they are deaf; disabled by a school's failure to provide a satisfactory communication environment; disabled by professionals who insist they know better than the child's own parents what would help them; disabled by segregation and so on. These are all ways in which a child with hearing impairment can be disabled by other people's attitudes and oppressive environments. Therefore we are arguing deaf children do not have disabilities, rather disability is something imposed upon them and their families by inadequate support. Stories families told us also provide many opportunities for showing how, when other people are enabling, deaf children and their families are not disabled and have access to exactly the same activities, achievements and aspirations as anyone else.

Our argument is that deaf children are disabled if other people have prejudicial attitudes towards them and towards their potential achievements. We argue that deaf children can be disabled by oppressive social and educational practices, by professionals who disempower both them and their families, and by any individual or group who, or which, is intolerant of difference and refuses to celebrate diversity. In short then, we argue throughout this book that deaf children and their families can indeed be disabled, and profoundly disabled too, but this has nothing to do with the fact of a child's hearing impairment. Intolerant people and oppressive environments disable deaf children and here, we think about deaf children and disability in terms of what everyone else, beyond the child, can or can't, and does or doesn't, do. We agree with Laurenzi and Hindley (1994) that it is completely unhelpful to think about deaf children in terms of what they themselves can't do.

The book makes a plea for readers to recognise their own role in the production of disablement for deaf children and their families. Families who spoke to us are challenging readers to think about how they can change what they do, so to produce enabling environments and support which is not oppressive. This sometimes makes the book an uncomfortable read. In parts, it proves disconcerting because we have recounted the stories families told in order to provide them with a vehicle for self-expression rather than to protect the sensitivities of those whom the stories are sometimes about. We feel that not to have done so, while much safer for us as writers, would have been a betrayal. If a particular passage does jar, it might be worth stopping to think why, and also to reflect upon the roots of one's agitation.

Throughout the book families with deaf children describe how they encounter potentially devastating crises, often harrowing encounters with other people and endless episodes of struggle in isolation as they battle for opportunities which would give them an ordinary life. What we argue is that these ordeals have surprisingly little to do with a child's hearing impairment yet everything to do with the way in which other people, especially (but not only) professionals, respond to deaf children and their families. We are certain of this because when a family's story is characterised by positive responses and enabling circumstances then the fact that a child has a hearing impairment is not necessarily associated with any crises other than those which ordinarily appear in any family with children from time to time.

How we assembled this book

The content of each chapter emerges from many hours of talking with families, and the material we present consists in direct reporting of their reflections. We rely heavily upon the words of the families who took part to add new perspectives to what has previously been written about their situations and experiences. Quotations are mainly taken from face-to-face interviews, and we add passages from letters, diaries and poems too, where these reveal more about the realities of family life when a child is deaf. A brief outline of the context in which the research came about, together with a description of our approach is presented next.

The families who took part

The families whose stories are represented in this book all experience family life with a deaf child. In other respects, the families are quite different from each other. The accounts which provide the main basis for this book, are those of a small handful of families who were the first to reply to a notice published in the magazine of the National Deaf Children's Society, inviting people to take part in the research (TALK, 1992). Those who came forward were all hearing parents of deaf children. One family was part of a cultural and linguistic minority group. The pattern of responses immediately raises important questions about the type of families whose views we are presenting and this is an important issue. Obviously we do not claim our small sample is in any way representative of families with deaf children generally, but we would add that there is no reason to suppose the material gives an atypical snap-shot. The families differed greatly, not only in geographical, social and material circumstances, but also in their reasons for choosing to take part in interviews. Their stories are amplified and extended by reflections of others who contributed to the project through writing.

Many times, one family's problems would be retold by another whose circumstances were totally different, except that they too had a deaf child in the family. Many readers will have heard or been involved in similar stories themselves, perhaps on numerous occasions. The continual echoes between anecdotes affirm the authenticity of those we recount in this book. When we started talking to families with deaf children, the complexity of what happens to them and the directness with which they could recall often painful chains of events, was immediately striking. The same preoccupations were repeated to us time and time again by different families and these vividly reveal the ease with which, without perhaps anyone having any awareness of doing so, a child's hearing impairment can be turned into a lifelong experience of disability — disabling not just for the deaf child, but often for the whole family too.

Critics will say the accounts are retrospective and memories are only partial; they are invariably selective and may be distorted, even inaccurate. Even so, we have been told the things that have stuck most in a family's mind. If professionals would recount the same events differently, then the mismatch between their version of events and the version which has stayed with a family is, no doubt, very revealing. In addition, some episodes which families discussed were not retrospective, but concern ongoing events and situations, and sometimes prospective events.

Another criticism could be that perhaps the families who volunteered to take part were the sort who like to protest loudly and that many other families who are content with the support they receive, simply did not come forward. This is plainly not the case. Families who took part did so for very different reasons, not least for some, because they felt they were getting good support and it would benefit others to know about it. We felt it would be helpful to specify the motivations for taking part to help forestall this reproach.

Reasons for taking part

Most families wanting to take part felt that by doing so they might help others:

Jenny: everything is quite normal that we are doing and we are experiencing ... I think [families] just need reassuring [and] we've come a long way. ... I would be more than willing to help you.... Chloe was eventually diagnosed as profoundly deaf at 22 months. She is now ten years old and we have reached all sorts of obstacles and hurdles on the way. Our main regret is that when we truly needed help and support or other parents to talk to we hadn't anything. Your world is shattered when you learn one of your children is disabled. I have lots to tell and hopefully all information you amass for your studies will benefit others.

As well as participating in an interview, Jenny contributed her personal diary to the project, again with a view to helping others:

Jenny: you see as I wrote these things, I was experiencing these things at the time .. just they might be little things that .. whatever, if it's of any help to anybody.

Other motivations were similar:

Paula: I feel by helping you, [we] might benefit others in some way, however small. That would be a bonus for us.

Two families wanted to address specific issues of ongoing concern:

Eleanor: Rachel is a bright happy child who keeps up with her peers and enjoys school. We have encountered many problems and frustrations along the way, both at school and at home and would be happy to share them with you. Our two concerns at the moment are (i) that as a 'mainstreamer' she has very little contact with other deaf children, (ii) her transfer to secondary education.

Graham: we too have a story to tell, it involves a deaf child, the DHSS, ourselves and of course, money. Our story started 870 days ago and will continue for a lot longer, during that time we have had a few skirmishes but the biggest battle is yet to come.

Most participants simply felt it would be productive to share experiences:

Foster mother (anon): I have learned a lot, in case it is any use for your project.

Gillian: I would like to tell you about an incident when my daughter was four and first went to school, one of the first pictures she brought home was of her family, Mum and Dad, two younger brothers and herself, all drawn as normal ... except Siân [see front cover]. This is the only time she has mentioned her ears, mostly she is very matter of fact about them. At the time she had only had her hearing aids nine months and drawing was one of her main enjoyments. ... If you are covering all of the UK in your research we would be interested in taking part.

Helen: I would like to take part in your project involving Deaf children and their families. Our daughter Katy is 23 years old with a wealth of experiences to discuss.

Characteristics of families interviewed

Pseudonyms are given for all members of the families interviewed who were living at home at the time of the research, or to whom informants refer by name.

Informants: Helen (mother), Andrew (father) and Katy

Deaf child: Katy, aged 23, living away from parental home. Helen contracted rubella during pregnancy and Katy was diagnosed as deaf at eight months.

Other immediate family: Martin and Stephanie (older siblings), living with parents.

Informants: Maureen (mother) and Graham (step-father)

Deaf child: Ian, aged 14, Ian was born prematurely and diagnosed as deaf at eight months.

Other immediate family: Robert and Scott (younger brothers). Nine stepbrothers and sisters living elsewhere.

Informants: Pat (mother) and Tony (father)

Deaf child: Christopher, aged ten. Christopher became deaf at the age of five, following meningitis. He had a cochlear implant at the age of nine, approximately twelve months prior to our meeting.

Other immediate family: one grown up half-brother living elsewhere.

Informants: Jenny (mother), Chloe, Joanna (older sister), Holly (younger sister) and Chantal (children's friend)

Deaf child: Chloe, aged ten. Following complications at birth, Chloe was diagnosed as deaf at 22 months.

Other immediate family: Doug (father) and Shelly (older sister).

Informants: Gillian (mother) and Siân

Deaf child: Siân, aged nine. Siân was diagnosed deaf at three years.

Other immediate family: Mike (father), Oliver and Dylan (younger brothers).

Informants: Eleanor (mother) and Rachel

Deaf child: Rachel, aged eight. Rachel was diagnosed deaf by the time she was 18 months.

Other immediate family: Brian (father), Richard and Simon (older brothers) and Hanna (younger sister).

Informant: Emma (mother)

Deaf child: Sam, aged two. Sam contracted meningitis in hospital soon after birth and was diagnosed deaf in the early months of his life.

Other family: Kevin (father), living elsewhere.

Three of the fa...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Acknowledgements
• Foreword
• 1 Deaf Children, Their Families and Professionals
• 2 Discovering a Child is Deaf: Dismantling Personal Tragedy
• 3 Getting Communication Going
• 4 Education Matters
• 5 Shared Experience: Overcoming Barriers to Ordinary Family Life
• 6 Images and Futures
• 7 What Can Be Done?
• References
• Index