Personal experiences – deaf children, the family and education

This article gives some indication of the range of activities of the organisation; a more comprehensive account is given in: Kate Appleton: The National Deaf Children’s Society 1944-2004, published by the National Deaf Children’s Society, London.

The beginning

The National Deaf Children’s Society can trace its beginning back to 15th December 1944 when a small group of 14 parents came together in the flat of Dr and Mrs Terence Millin ‘to form an association of parents of deaf children to deal with the various problems associated with their education’. The annual subscription was set at five shillings (25p) per annum.

The following January the organisation adopted the name ‘The Society of St John of Beverley’ although this was changed six months later to ‘The Deaf Children’s Society’ (DCS). The objects of the society were ‘to further in every way possible the provision of a full modern education for all deaf children in England as already accorded to hearing children’. This was a particularly good time for such an organisation, as the 1944 Education Act made particular provision for children with disabilities including suitable programmes of study and specially selected and trained teachers.

The first annual conference was held in 1956. This brought various local organisations together to discuss ways they could work together and led to the proposal that a national organisation should be developed to coordinate national matters. This was proposed at the AGM and in March 1958 the National Deaf Children’s Society was formed with Freddy Bloom as its chair and Gordon Smith as its general secretary. Royal patronage of the organisation was first proposed in 1952, but it was not until 1961 that the Queen Mother agreed to be a patron of the society.

In 1959, the first of a tradition of focusing on deaf children’s issues during May was launched with the May campaign of 1959. The highlight of the first campaign was The Flower Ball in the Savoy hotel on the 20th May attended by 370 people. By 1961 though, it was felt that concentrating activity into a week rather than a month was more effective and the May week came into being, a tradition that continues.

Teachers of the Deaf

The first concern of the new organisation was the training of Teachers of the Deaf and priority was given to the training of as many teachers as possible to a high standard. The course at Manchester was supported and bursaries provided. In 1949, a positive step forward was taken when the Education Minster agreed that local authorities should pay qualified teachers while they were re-training as Teachers of the Deaf. This focus on teachers, provision and teaching competence continued as a theme for many years.

Through the 1960s, the shortage of teachers remained an issue. The organisation welcomed a new teacher training course in London and continued to support the established course at the University of Manchester through bursaries. A campaign to improve the numbers of qualified teachers continued with a joint conference with the National College of Teachers of the Deaf (NCTD). The handout was entitled ‘Deaf Children’s Schools – a National Disgrace’.

A major debate developed in the mid-1980s when there was a move to suggest that teachers of the deaf and of blind pupils would not require a specialist qualification. In 1984, the National Deaf Children’s Society, together with the British Deaf Association, protested at this proposal. Eventually the government agreed that the mandatory qualification should remain.

Early diagnosis of deafness

The second concern in the early days, and one that has been a recurring theme throughout the 60 years of the society, was the need for the early diagnosis of deafness. It was, and still is, seen as important that all children should have their hearing tested as early as possible so that appropriate communication and educational support could be provided where necessary.

A major development in the late 1970s was the possibility of a screening programme to identify deafness in infants. The parents’ conference on this theme, held at the University of Manchester with the Department of Audiology and Education in 1977, was a landmark development. The society had actively supported the development of a screening programme, including funding a research project at Southampton University.

In 1988, the society renewed its demands for a neonatal screening programme to identify deafness as soon as possible after birth. This followed the publication of a report by the Medical Research Council saying that, of the 840 deaf babies born each year, less than half were diagnosed by eighteen months. This was also a theme in the society’s Open Day in 1998 on ‘Paediatric Audiology and Healthcare for the next ten years’. Success came in 2001 when at the National Deaf Children’s Society Paediatric Audiology Healthcare conference, John Hutton, the Minister of State for Health, announced that the long awaited programme to screen all new born babies for deafness would be implemented in England.

Education of deaf pupils

The publication of the Lewis Report in 1968 was anticipated as a milestone in deaf education, but the report was seen as disappointing and inconclusive. One of its suggestions was that there should be further research into the introduction of manual communication into the classroom. After some time, when little seemed to have happened, the society approved the proposal that it should support carefully controlled experiments into the use of the combined method (speech and sign) in the education of deaf children.

There continued to be a sense of unrest among parents who felt dissatisfied with the then system of educating deaf children particularly at secondary age. Jack Ashley, the deaf MP denounced Edward Short the Minister for Education and the Department of Education for their ‘breath-taking complacency’.

As a result of pressure from the National Deaf Children’s Society, as well as other organisations, the education of all children with special educational needs came to special attention with the formation of the Warnock committee to report on this issue. In 1974, the society submitted evidence to this committee presented by Winifred Tumin. It was comprehensive and covered such areas as the role of parents, the supply and training of teachers and other staff, curriculum, teaching methods and aids, organisation of education, and further education.

In 1981, the draft Education Act was produced with its focus on the education of children with special educational needs. The society made extensive comments on the draft circular emphasising the need for local authority services for deaf pupils to be ringfenced, and the importance of qualified Teachers of the Deaf. The Act was implemented in 1983. The National Deaf Children’s Society felt that many of their comments had been addressed.

In 1989, there was a major bill, the Education Reform Bill, dealing with the National Curriculum and Grant Maintained schools. At its discussion stage, the society successfully argued against the right introduced for Grant Maintained Schools to exclude children with special educational needs.

Methods of communication

In the early days of the National Deaf Children’s Society, the Lancet agreed to publish an article about the society and the education of deaf children. This raised the issue as to whether they should have a position on the preferred method of communication. They decided not to advocate a particular approach but rather to endorse the notion that the form of communication used should be the one that suited the particular child, a policy which the society still maintains.

In 1958, a policy statement on communication had been drawn up.

The Education Committee is convinced that every deaf child should be given the maximum encouragement to use any residual hearing and given every opportunity to learn lip reading and speech. It is for this reason that the National Deaf Children’s Society supports all measures leading to early and accurate diagnosis; early educational and auditory training; modern and well-equipped classes and schools; smaller classes; a more flexible approach to placement in schools; more people trained to help deaf children and their parents; all people supervising deaf children should receive adequate training.

A deaf child with no means of communication at all reflects the lack of flexibility of our educational provisions. Any method of teaching deaf children must ensure that each child is given a means of communication.

Equipment

As part of its development, the society aimed to support deaf children through provision of additional equipment. By the mid-1960s, the organisation had purchased 38 Auditory Training Units (ATUs) which were loaned to teachers in the hope it would encourage local authorities to provide this equipment. Through the generosity of Mrs Lyons, the chair of the organisation, it was able to buy four minivans, and later another four, which were lent to the regions for deaf children’s excursions and general transport.

By this time, technological developments were having a major impact on the lives of many deaf children and many of the enquiries coming to the society required technical information and advice. They decided to set up a special service as part of its provision to give telephone advice and information about developments and equipment available. They also set up a loan service so parents and children could try equipment before purchasing it as much of it was very expensive. An appeal for £250,000 was made, supported by a number of well-known showbusiness people. Many businesses contributed as well as the government.

In the winter of 1986, Tony Winstanley was appointed head of the new National Deaf Children’s Society Information Centre in Birmingham. This was supported by the Blue Peter Lend An Ear campaign which raised over £100,000. They facilitated a loan scheme for equipment as well as the employment of two extra staff.

On the first day of 1990, the society was besieged by journalists because of their report documenting the intensity of the sound that could be issued from personal stereos and the potential damaging impact on hearing. The society demanded that the stereos cut out when a particular sound level was reached or alternatively a warning light should be installed that came on when the music was particularly loud.

The National Deaf Children’s Society Technology Information Centre in Birmingham held its first Open Day in June 1991 when 26 exhibitors were present. In 1995, these services were transferred to London and in the spring a fully equipped technology room opened complete with communication aids, environmental aids and educational toys. The range of available hearing aids then was vast including behind the ear aids, in the ear aids, bone-anchored hearing aids, vibrotactile aids and transposition aids as well as cochlear implants. The possibility of reaching children and their families throughout the country was made possible by sponsorship worth £195,000 from the Midland Bank which enabled the society to take a mobile technology exhibit to the community.

Medical issues

Rubella in pregnancy was recognised as a potential cause of deafness in the unborn child and in the 1980s the National Deaf Children’s Society linked with other organisations to improve the uptake of the rubella vaccine, a vaccine which could prevent some instances of deafness in children. This move was given an impetus in 1983 when Diana, Princess of Wales became the patron of the Nation Rubella Campaign in 1983.

In September 1990, the National Deaf Children’s Society published a report on audiological services for children, based on research and raising a number of concerns about access to medical advice. Among other things, it recommended direct self-referral by parents to children’s assessment centres, improved training for professionals and better information to be made available about otitis media (glue ear).

Cochlear Implants

Cochlear implants for children were first introduced in the late 1980s amid much controversy. The National Deaf Children’s Society published a detailed article in TALK which looked at the technical, medical and moral aspects of this development. In 1989 the society, together with the Royal National Institute for the Deaf (RNID), published guidelines for the consideration of children for implantation. This included audiological, educational and social criteria that needed to be taken into account. These guidelines were accepted by the British Cochlear Implant Group.

Dissemination of information

By 1960 the National Deaf Children’s Society was growing and had established itself as a major organisation addressing the concerns of deaf children and their families. One of their main activities was disseminating information and to this end they developed, and have continued to develop, leaflets on many different topics. Currently this role is also shared by their website. They also produced the ‘List of books for deaf children’ which was very popular and constantly updated. Among the many publications produced in the 1960s, the book by Freddy Bloom ‘Our deaf children’ was particularly significant, based on her own experiences as the mother of a deaf daughter and written in a provocative style. Its main focus, as one might expect, was communication and she writes:

The primary task of parents, and one which they must never forget, is to establish some method of communication with their child right from the beginning; and it does not matter what that form is … The important thing is that the child should be able to understand and that he should be able to make himself understood.

The first issue of TALK, the magazine of the organisation, was produced in September 1956. Previously, newsletters had been circulated, but when Freddy Bloom was appointed as newsletter editor, she proposed a new format for what was to be a quarterly magazine. This was professionally printed rather than being duplicated. The year 1983 was the end of an era as Freddy Bloom retired from this post. Under her editorship, the magazine had changed and grown. The print run had gone from 6000 to 15000, the magazine cost £20,000 per annum to produce and was read in 35 countries.

On a lighter note, in 1986 a story book for deaf children was developed which included signs. The book used was ‘Where’s Spot’, a very popular book with young children. An artist was brought in with the difficult task of fitting signs on the page alongside the illustrations. A measure of its success was that the book was short listed for the Smarties book prize. Television

Deafness and deaf children became more visible on television in the early days of the organisation. In the 1960s there had been a deaf boy on the popular TV programme ‘Dixon of Dock Green’ where the presentation was sympathetic. However, an American thriller showing a deaf girl without speech was criticised by the society.

In the 1964, Pat Kensal first presented ‘Vision On’, a programme of arts and mime designed for deaf children but appealing to all children.

What had begun as a small initiative by the programme ‘Blue Peter’ developed and had long term impact. This children’s programme held a fundraising event every Christmas. In 1977, they asked children to collect small metal objects such as keys and dinky cars and send them in. These were turned into cash to provide mobile classrooms for deaf children which were well equipped and used by teachers visiting isolated deaf children. The funds raised allowed four such classrooms to be purchased by the society. At a later date, Blue Peter decided to repeat its Christmas appeal for deaf children. Again, it asked for metal objects but this time these would raise funds to provide radio hearing aids, environmental aids, speech trainers and portable audiological equipment. It was a very successful appeal with millions of parcels arriving with metal goods, some of which were very valuable.

The introduction of subtitling on television, including the live programme Blue Peter, had facilitated access for deaf children to these programmes. This had been made possible by a grant from the society. However, the BBC planned to stop providing this facility on Blue Peter, transferring the resource to the news programme. Pressure from the society among other groups meant this decision was reversed.

Deaf children from ethnic minorities

In the 1980s the situation of deaf children from minority ethnic families came to the society’s attention. Harry Cayton, the then director, said ‘deafness is a severe difficulty for a child without their ethnic origin acting as a further bar to education and health and social services’. An equal opportunities working party was formed in 1986 under the chairmanship of Sajjad Munir. In July 1995, Melissa James, National Deaf Children’s Society Ethnic Minorities Officer, launched a project to investigate the particular needs and problems faced by black and ethnic minority deaf children and their families.

In 2003, the society developed a large scale project in East London to help Asian families communicate more effectively with their deaf children. This built on the success of other schemes with mixed ethnic groups in other parts of the UK.

Child protection

Abuse was another concern, particularly in the late 1980s. Because of the isolation experienced by some deaf children, it seemed they could be a particularly vulnerable group. Keep Deaf Children Safe was a project set up jointly by the Nuffield Centre and the National Deaf Children’s Society to look at the issues for deaf children and ways of preventing such abuse.

Links with other groups

In June 1990, Harry Cayton, Director of National Deaf Children’s Society was elected President of the European Federation of Parent Associations of Deaf Children (FEPEDA). The following year, 60 parents from 14 countries assembled for the first FEPEDA General Assembly in Lisbon. It coincided with a youth camp and a three-day seminar for professionals working with deaf children.

In the UK, a Council for Deafness was formed linking all organisations concerned with deafness, and facilitating their putting their views across with one voice. Hearing children of deaf parents also linked up in the organisation Children of Deaf Adults (CODA).

International perspectives

The International Deaf Children’s Society was launched in 2002 with the aim of improving the life chances of deaf children everywhere. Two thirds of the 123 million deaf people live in the developing world where only ten per cent receive any education at all. This initiative aimed to build on the experience of the National Deaf Children’s Society in supporting families and advocating for better services for deaf children and their families. One of their achievements at that time was to compile the largest and most comprehensive on-line directory of deaf organisations across the world.

Further developments

Since those early beginnings, the National Deaf Children’s Society has considerably expanded its services and continued to act as a passionate and informed campaigner for deaf children and their families. For a brief review of current developments see the contribution by the Chief Executive, Susan Daniels, also included on this website.

Susan Daniels, Chief Executive of the National Deaf Children’s Society, shares the charity’s more recent achievements and its ambitious plans for the future.

Over the past 13 years we’ve continued to build on our strong history, providing expert support, raising awareness and campaigning for deaf children’s rights.

We’ve brought about ground-breaking change, successfully campaigning in 2006 for hearing tests for every newborn baby in the UK. We’ve also tirelessly challenged cuts to services for deaf children, with MPs debating this issue in parliament in 2013.

Deaf children have always been at the heart of everything we do and this has continued up to the present day. We created the Buzz, our website for deaf young people in 2010. And in 2016, we launched our new Roadshow bus, which visits schools across the UK, delivering information about deafness and confidence-building workshops.

This June sees another key point in our history – the launch of Overcoming Barriers, our new strategy for 2017–2022. It’s ambitious and bold and will set us on an exciting path for the next five years.

Central to this is our ambition – that by 2030 no deaf child will be left behind, at school, in their community, or at home. To make sure we achieve this goal, we will work to overcome the barriers deaf children face in three key areas: local and national services, language and communication, and independence. These are areas where we know we can make the biggest difference, and where not taking action would have serious consequences for deaf children.

Since the charity was formed in 1944, we’ve believed that deaf children have a bright future – but only if we break down the barriers they face. The support of our amazing members, supporters, campaigners, volunteers and staff will be vital in reaching our goal. Together we can overcome the barriers that hold deaf children back.

This article is taken from Freddy Bloom’s ‘Our deaf children’ published in 1963, chapter 10 ‘The family.’ Some of the terminology used has since changed.

One of the biggest burdens handicapped people have to bear is non-handicapped people. This is proved, over and over again, with the deaf and the hearing. It leads to a number of dilemmas.

It is essential to gain the sympathy and understanding of the general public if the atmosphere in which deaf children grow up is to change. When the public realizes just what deafness in a child implies, it is almost always deeply touched. This emotion often leads to a romantic, unreal attitude. People become sloppy about poor, dear little deaf children. They just ache to do something for them. When they come up against the reality of our non-hearing boys and girls, they often cannot take what they find. They expect helpless, appealing little creatures who are pathetically grateful for any kindness they receive. It just does not work out that way.

It is always a dangerous thing to generalize, but certain generalizations are fairly valid. Our children are usually self-contained, self-willed and self-centred. They take what comes to them, good or bad, for granted; but they are more vehement in expressing their disapproval than their approval. They seem thoughtless and rude and have an infinite variety of ways in which to be embarrassing. They are determined but, in their early years, are rarely persevering. Their energy is incredible, and their affection violent when they feel like it. They are simple little animals. This unattractive picture is not enhanced by the noises they make.

It would take a most exceptional person, or an emotionally dishonest one, to feel nothing but warm love for a deaf child all the time.

There are moments when one would like to throttle the best of them. It is hard not to lose one’s temper, even though one understands exactly why they are as they are.

A big trouble is that the majority of parents faced with their own deaf child do not realize that this abominable behaviour is normal, general and inevitable. They worry and make excuses for themselves and for the child. It is often a worry that parents find hard to discuss, even amongst themselves, for it seems disloyal and wrong to suggest that any young thing, especially a handicapped young thing, can be obnoxious. But obnoxious they are!

It is much better if we face this fact without any guilt. It is not our fault. It is not the child’s fault. It is all the result of lack of communication. As soon as we face the situation squarely we also face a magnificent challenge. It is within our power to do something about this. One of our most effective weapons will be a sense of humour. Nobody knows exactly what this is, or how to measure it. It implies a sense of balance, a sense of the ridiculous, an enjoyment of the incongruous and the ability to laugh at ourselves. If you are going to deal with a deaf child you cannot take yourself, or the child, too seriously.

The emphasis is usually on the tragedy of the handicap, the pain of frustration, the strain of endless work and patience. Our deepest emotions are so intimately involved that we don’t see the fun. This fun could not exist if the boys and girls were suffering, physically or otherwise. Make no mistake about it; no young deaf child suffers unduly because of the deafness. He enjoys life. It is the parents who suffer.

But even suffering should be done in moderation or it becomes slightly ridiculous.

I have always found that one of the most delightful talents of deaf children is the smooth way in which they prick the balloon of unwarranted authority, mainly parental authority. If you ever had any idea of being boss in your own home put it away the moment a deaf child enters. Respect, or even the outwards manifestations of it, is something to be learned by any child. It is a lesson which the child without communication rejects with no trouble at all. In the early years, he takes it for granted that the world and all people and things therein are his to be dealt with as he pleases. This attitude is naturally encouraged and substantiated by the activities of those about him. Mother and father are devoted to him. They feed him, cuddle him, play with him and quite obviously are his slaves. If they then try to assert themselves, they seem inconsistent and troublesome.

The young deaf child cannot take other people’s feelings into consideration because he does not know they have any. He functions in a completely logical pattern that appears unreasonable to us. There is something utterly ridiculous in our futile efforts to teach the child something he is not ready to learn. Our own egos have to go by the board. If we sit back and think how many years we have been busy building up our egos, and then see the ease with which these little tots tear them down, the safest, sanest reaction is to laugh.

Intrinsically tied up with our urge to confirm to society is our sense of dignity. The man who slips on a banana peel, or has a custard pie flung in his face, is funny because his dignity has suddenly gone for a Burton. There is no parent of a deaf child whose dignity does not get knocked to pieces. We seem to go from one embarrassing situation to another. Our children create scenes when scenes are out of place. They have no sense of discretion or discrimination. They make us go through hell. Again, there is an element of humour in our futile indignation.

But there is comfort as well as humour in knowing that our offended sensibilities are shared by all other parents of non-hearing children. All over the country, all over the world, there are other poor fathers and mothers going through the same turmoil. Hundreds, thousands of them: all at the mercy of the little fiends.

(It is probably unnecessary to mention that these horrible children are also the enchanting creatures who fill our hearts with such exquisite pain when their trusting, innocent, questing eyes gaze into ours. It is not sloppy sentimentality that fills our eyes with tears then; it is the recognition of a reality so pure as to be almost unbearable.)

Once one has the right attitude of mind, there is real joy to be derived from the stupidity of outsiders. These include neighbours, strangers, friends and relations, probably very nice people who do not know what they are talking, or thinking, about. The lady in the bus who gives your child a disapproving glare before looking away is an idiot unable to spot what is the matter with the child. Most of us come across at least one well-meaning soul who comforts us by saying, ‘Don’t worry, they have such wonderful Braille books now.’

Your deaf child will land you in innumerable funny situations which you might as well enjoy. If you do nothing about it, however, the humour of the situation will pall considerably when your child is older. You are not going to make a civilized human being out of the little wretch without a struggle. It is a serious struggle which can be a sport which both you and the child enjoy as grim sportsmen do. It is a game in which only you know how high the stakes are. The odds are actually in your favour, for you can collect a whole team to play on your side; whereas the only support the child will get will come from your own weaker nature.

Occasionally, one hears parents excusing their own lack of success with their deaf child by mentioning that they had other children to consider as well. It is a great pity that they were not helped to see the situation in another light. Surely the bigger the family the more the handicap can be shared and each portion will be that much smaller. A good family is not just a group of individuals each leading his own life. A family is a unit which acts and thinks and feels together. Therein lies the strength of the individual. The unit shares what is pleasant and unpleasant.

The best way of dealing with the deaf child is to give him a sense of belonging to that unit and of sharing with it right from the beginning. If the other children in the family are brought up with this feeling, too, then they will accept that the handicap of one of them belongs to all of them. This sounds ideal, but it is also practical. In fact, I know no other way in which the problem of the handicapped child in the family can be efficiently tackled. At all costs one must avoid the disastrous attitude of ‘poor little Johnny’ or ‘poor little Sue’. This puts all concerned at an immediate disadvantage. Johnny or Sue is an ordinary child who happens to have bad ears. It is wrong to make him or her an outsider, an object of pity. It immediately exaggerates the importance of the handicap and paves the way towards self-centredness and moral blackmail. It is an attitude that will make the other children resent, rather than accept, their deaf brother and sister.

The deaf child must have extra attention and care. Jealousy from siblings can be avoided only if they understand and participate in coping with this nuisance, which affects not only the handicapped child but the entire family. It is no good, however, making this a purely logical business. There must be rational explanations; but all human beings, including very young ones, are ruled more by their emotions than by reason. Each child will need that much more cuddling, affection and attention because one of them makes special demands.

Perhaps it is as well to mention here that there is a danger that one or both parents may try so hard to do everything for the deaf child that they overlook the needs of each other. Husbands and wives are human too; and they got married because they were looking for something in each other. It will not help the deaf child at all if the relationship between his parents becomes strained. Perhaps it would be better to say over-strained. The presence of a non-hearing child in the home must cause tremendous stress. This cannot be avoided. Great care must be taken to see that this stress does not become unbearable for anybody.

The greatest consolation lies in the fact that time passes. The child learns, improves, grows up. The better the job done, the better the results. One becomes accustomed to responsibilities that seem incredibly difficult in the beginning. Any mother who can remember bathing her first-born for the first time will recall the fear and trepidation with which the operation was undertaken. The baby seemed so small and slippery and wiggly. Hands felt so clumsy. Disaster seemed inevitable. After only a very few weeks all the uncertainty has left, and giving baby a bath became an automatic business that was not even a chore. It was just a habit. And then, suddenly, before one was really aware of it, there was an independent young creature sitting in the tub scrubbing himself. This is the normal pattern and applies to work with deaf children.

It is important to remember that it will be many years before the deaf child himself is aware that there is anything the matter with him. He just knows he is himself and he will accept himself exactly as he is accepted. Like all of us, he will have a little world of his own of which he is the centre. At the same time, he finds himself as part of the world about him and he will take for granted his position in it as long as this gives him security. It is much easier to lick him into a socially acceptable shape if he has to take his place with other brothers and sisters. They will soon let him know what is his and what is theirs. They will have fun and games and hell-for-leather fights. He will learn that he cannot always have his own way.

One should be able to say that the larger the family, the more opportunities there will be for the non-hearing child. As always, though, it is not basically the quantity that matters, but the quality. Judging quality depends upon standards and these, in turn, depend upon one’s philosophy of life.

I have never been able to understand why almost all the books written about deafness in children concentrate on facts, theories and techniques. They seem to be mainly concerned with communication and formal education. Even when the sociological or psychological aspects of the deaf are discussed, it is, from an objective, scientific point of view, on a fairly superficial level.

Knowledge is unprogressive unless it is accompanied by action, and all action is emotionally motivated. This must be appreciated and the motivation recognized before there can be deep understanding.

Self-examination is often painful and unwelcome. It seems impossible, however, for parents to be good parents of any children, handicapped or not, unless they have some idea who they are, and why they are. There must be standards of what is desirable, of what is possible and what is impossible. One must have means of measuring the value of things and the price one is willing to pay. Without a goal one wanders aimlessly, but there should be valid reasons for choosing the particular goal.

The philosophy of life of the parents of a deaf child is of far greater importance than early diagnosis or a properly functioning hearing-aid. This is true not only because their attitude towards life will determine his place in it, but because for many years they will interpret almost all of his experiences for him.

This excerpt is taken from the book ‘The day is ours’ by Hilda Lewis, published in 1947. She was a well-known fiction author writing books for both adults and children. While it is unusual to use fiction on this website, Hilda Lewis knew a great deal about deafness and the award winning film ‘Mandy’ was based on this book.

See the section of this website on Spoken Language, Personal Account 4 for more information about the film and its background.

From Chapter Five

Dr. Jane Ellis looked at Christine with eyes that missed nothing.

So they came, year after year, the mothers, the fathers. So they sat, very patient, very still, not to betray to the stranger the heart’s pain. But the eyes; and the hands that could not lie quiet; those told everything.

She never got used to their pain; nor to the exultation that quickened within her when she knew she could help. But when it was not deafness alone; when deafness was part of mental deficiency and she had to tell them – the parents who looked at her as though she were God -that she could do nothing, then she knew herself old . . . useless.

And yet, she thought, chin resting upon the fragile arch of her fingers, to think that way was wrong, ungrateful. For she had been blessed in her work. And when she herself died, the work she had begun would go on – here in this school of hers; the closed mind unsealed, the dumb lips opened; the child taken by the hand and led step by step into his rightful world. To have been allowed to do this work! One was never so old but that one could be grateful.

“I’m glad you came to me,” she said and they were not mere words.

Christine’s set face relaxed.

“There’s a great deal that can be done for deaf children,” Jane Ellis said. “How much we can do for your child I cannot say until we have seen her and tested her. Of course we can’t work miracles. But almost, almost. We train our children to use eyes instead of ears; and all of them learn to lip-read. We teach them to speak, to speak in the normal speech of the spoken word – almost. To catch the words, to answer them. To understand and to answer – that is communication. Communication,” she said softly, “the deepest desire of the human soul.”

Christine, unable to speak, nodded.

“That of course, you understand, happens only with our very best children. But it does happen. When such a child goes out into the world he is no longer isolated.”

No longer isolated. She had put her finger on the spot, the old woman with her wise eyes.

“Of course,” Jane Ellis said. “we can’t do it alone. We need cooperation. The child’s. And – yours.”

Christine said nothing. She looked at Jane Ellis as though she looked upon salvation.

How alike they were, all mothers! There was always that look upon their faces as though they were willing to be cut to pieces. And yet Jane Ellis thought, sighing, how quickly, at the first hint that the child has not yet settled into its new world, they come rushing, all good resolves forgotten, eager to take the beloved little one home again. Human nature!

“You realize, of course” Jane Ellis said, “that if I do decide to admit her, you must leave her with us entirely. No visits home. No visits from home. Not at first. These emotional upsets – they’re too strong, too wearing for the young child fresh from home. They set us back for weeks, if they don’t make the work impossible altogether. We must, for a term at least, have the child altogether to ourselves.”

There it was again! They ran true to form, these mothers! One knew the thoughts of this woman sitting there without even looking at her . . . The afflicted child in the midst of strangers – alone. This mother, like all the rest, hardly able to give some pain that much good might come; unable even for the child’s sake, to rob herself of the sad joy of standing between it and the world.

“It’s absolutely essential, believe me.” But with this mother, desire to serve the child was not emotion merely. It came from the head as well as the heart.

Jane Ellis went steadily on.

“You see, here the child will have companionship of her own kind – free companionship. You wouldn’t know – until you missed it – how essential that is. To know that you belong. It’s the only free companionship. Once your little girl felt that, she would begin to lose the dreadful oppression that the deaf-mute knows – the untaught deaf-mute. Oppression, frustration…”

“Frustration….” Christine repeated it, softly, bitterly.

“But you know that of course! And make no mistake – the more intelligent the child, the more desperate the sense of frustration.”

Frustration. Exhaustion. Quiet periods of resentment. That was now the pattern of Tamsie’s life.

“If you knew that we could stabilise your child through speech, it would be worth the pain of parting, wouldn’t it? To speak – “Dr. Ellis said softly “that meant more than communication with one’s own kind, much, much more. Until you can grasp an abstract idea, you cannot communicate with your own mind, your own soul. With . . . God.”

“Yes,” Christine said, “yes . . . I’ve thought and thought. I’ve nearly gone crazy thinking.” Her mouth twisted as if she were going to cry. “The simplest ideas of right and wrong . . . no way of reaching her.”

“The mind locked up,” Jane Ellis said. “How can you unlock it without words?”

“The mind locked up,” Christine repeated. “And how locked! Every child has at least heard of God, has some simple notion of a heavenly father; but Tamsie – not the faintest.”

“The notion of God,” Jane Ellis reminded her gently, “it isn’t so simple, not even when you can hear; not event when you’re sixty instead of six.”

“It’s easier at six,” Christine said.

“When she’s ready for the idea of God, she’ll come to it. We do our part when we take down, bit by bit, the barrier that shuts in her mind. She must take her own time. And – fast or slow – you must trust us.”

“I trust you,” Christine said. “And I shall be grateful all my life.”

She must part with the child. The thing was clear – above all question, all argument. If this woman had refused, then she would have gone on her knees, until she had consented. But never had the child seemed so pitiful, so dear; never herself more futile, more useless. To be able to do nothing for one’s child except send her away!

The hardest way, Jane Ellis told her, unspeaking.

“There is so much you can do.” She set her wise old eyes full on Christine. “After a while, when Tamsie is settled, there will be holidays. And that’s where you come in. You’ll have to learn, too; you’ll have to help her.”

If that were true! If one could help, could a little ease the sense of one’s own guilt!

“You could train yourself at a school for the deaf, you could learn how the deaf are taught.”

“Yes,” said Christine, “oh yes . . .”

“There’s a school at Brantham – very good I believe – but a day school. Here we believe in having the child altogether. Learning to speak – that isn’t a matter of the classroom alone. For the deaf it’s a way of living. Still, if you choose, you could send her there. It does good work.”

“No,” Christine said. And – No-one but you. Her mind cried it again and again.

“I say we must have the child altogether, but that doesn’t mean anything drastic, you know. We shall go very gently, very slowly. And, of course, we shan’t start teaching her to speak. We couldn’t. There are other things she must learn first. We have to calm her, stabilize her, not allow her to waste precious energy on useless rages. And above all we must build up confidence. Those things come only with discipline. So discipline comes first. But – ? she smiled, “our discipline isn’t harsh. We’ve no corporal punishment. No punishment in the accepted term at all. We try to build up a sentiment, an atmosphere – and it works. So don’t worry, Mrs. Garland, Tamsie will settle. They all do . . . and I’ll let you have the Brantham address.”

“Thank you,” Christine said. How poor her thanks! She wanted to take the frail old woman by the hand, to pour out her heart’s gratitude. And all she could say – a bare Thank You.

At the door she stopped. “There’s so much I want to say, but I am not able. I am so grateful. And so happy. And – “she shrugged.

“Don’t be grateful. And don’t be sad. Just be happy.”

“You must be a happy woman,” Christine said abruptly.

Dr. Ellis nodded. “It’s the work I want to do most in the world. You see I was deaf myself – for a little while. After measles. I was nine. A little while – did I say that? There was no time . . . endless. Shut up in silence; only the noises in one’s own head, the tiring, unmeaning, unceasing noises from which you can’t escape for a single minute. Human voices – none. Not my mother’s voice; nor my father’s. Not my own voice, even. Horrible. And terrifying. I have never forgotten that either. And now . . . now?” She cupped a hand to her ear. “Well, now I’m old and it doesn’t matter so much. A rough and ready justice, payment perhaps for being allowed to help.”

“But,” Christine said, “I never thought . . . never guessed.”

“Lip-reading,” the old woman said and smiled.

Note: We have tried without success to get permission to use this material. Anyone holding the rights to this book should contact us via the website.

Pre-school visits were the most satisfying part of my work, where I felt that I was fully using my skills. At one stage there were twelve pre-schoolers on my books, to be visited at home once a week, but my general average was six to eight. If my diary were full, it was not unknown for me to fit six such visits into one day. It was not always convenient, however, to call at some homes too early in the morning, and at the end of the day toddlers grew tired and irritable. Visits had to be planned around a baby’s morning or afternoon nap. From the time of diagnosis of hearing loss, until they started at mainstream school or the unit for hearing-impaired children, the supervision of their hearing and speech was my responsibility.

My initial home visit was just to chat to the mother about the child and his/her past history and to observe the little one in the home environment. On all subsequent visits I worked with the child, sticking to the same routine to give confidence and security. The mother would sit and watch, hopefully picking up ideas which she could follow up with her child during the week. First the hearing aid, if any, had to be checked, otherwise there was little use continuing the lesson. I took along a specially selected bagful of toys which drew the child’s eyes as soon as I walked in. With babies, I worked on the floor. (For this reason I generally wore trousers.) At the age of two, most toddlers could be encouraged to sit on a child-sized chair at a child’s table or coffee table. Older children could sit at a kitchen or dining table. Having initially greeted the mother and enquired after her health (most important) and then how the child had been, I thereafter addressed my remarks to the child, avoiding eye contact if the child were shy, but keeping up a running commentary about the toy in hand. My speech was purposefully repetitive until the child was completely relaxed and eager to participate. There was no need to ask a child to copy any word or phrase. Indeed this would probably have caused him/her to become silent. Soon he/she would be echoing my animal and vehicle noises. Then it would be single words (up, down, hello, bye, ball, baby, etc.), leading on to phrases (in the box, round and round, stand up, sit down, good boy, oh dear, etc.). At a later stage I would ask questions and answer them myself, until gradually one-word answers were forthcoming and eventually incomplete sentences as vocabulary increased. Nouns and action verbs were fairly easily acquired. Adjectives and prepositions took a little longer and needed to be encouraged by appropriate toys. I used colloquialisms in my speech, so that these would be echoed (oh bother, never mind, hurry up, etc.). Before starting school, most of these children were able to name colours, familiar animals, toys and everyday objects. They could respond to simple instructions (put it away, turn it over, open the book, etc.) and give a short answer to simple questions (where? what colour? who? how many?).

It was important to have the child mixing with other children and adults as soon as possible. Part of my function was to investigate local toddler groups, playgroups and nursery schools, to advise the parents and to liaise with the group leaders and teachers of whichever one was chosen. So many playgroups that I visited were in large community halls with adult-sized chairs and tables, some with no outdoor play space and sometimes with untrained play leaders who stood around chatting to each other about their own affairs instead of guiding and stimulating the play of their charges. One hall, with tightly closed windows, visited on a Monday morning, had had no ventilation since the Saturday night booze-club had met there, leaving a beery smokey atmosphere for the children to breathe in.

The whole aim of my home visits was to encourage speech and language in a normal pattern of development, so that the child would be able to cope at school age.

From Children of Silence by Kathy Robinson, published by Victor Gollancz, London, 1987

The month in which we waited for the appointment with the teacher of the deaf passed slowly. When the day finally arrived Sarah and I made our way to the clinic three miles from where we lived.

We entered a square hallway and through one of the doors leading off it, I saw a lady sitting opposite a small boy was holding a feather between his teeth. Sarah would soon be doing that, I thought. Learning how to pronounce words properly.

Another door opened and as the teacher ushered a small girl from her room, my heart jumped when I saw her black hearing aid. It was strapped to her chest, blatantly ruining the front of her dress.

The teacher greeted me and said ‘Hello’ to Sarah. She was well-groomed and self-assured, and this made me feel even worse than I had before. If Sarah needed a professional like this to help her, what could I possibly have to offer? She had a specialist knowledge of deaf children and I had none.

Sarah was asked to sit at a small table upon which stood a machine and a pair of earphones. The teacher placed the earphones over Sarah’s head and adjusted them to fit her ears tightly. She switched the machine on and spoke into a microphone which hung from a cord around her neck. ‘One, two, three. Hello, hello. Testing. Testing.’ When she was satisfied it was working she looked up at me. ‘This is an auditory training unit,’ she explained. ‘It amplifies sound. I can adjust it to suit Sarah’s hearing loss. This knob here boosts the high tones and this the low tones. That dial there tells me how loud my voice is. I have to keep it on a level which makes the needle stay on the red line.’

I watched the needle as it wavered near the red line and saw it fall when the teacher stopped speaking. Sarah was fascinated too. It surprised me she hadn’t made a fuss about wearing the earphones. They were far too large and cumbersome for a child.

‘If you watch everything I do,’ the teacher went on, ‘then you’ll be able to copy the session at home with Sarah.’ She held the microphone near her mouth. ‘Hello Sarah’.

. . . I moved forward in my chair to interrupt. I would have to explain that Sarah didn’t know her name. I had been saying ‘Sarah’ for years. Surely she realized that Sarah couldn’t hear.

On the floor by her teacher’s side was a large cardboard box, and, as the lesson progressed, she pulled pieces of a toy merry-go-round from it and joined them together with gaily painted nuts and bolts. I concentrated on every move she made. I noticed she spoke clearly and that she held the pieces of the merry-go-round up near her mouth.

‘Here’s a stick,’ she said. ‘A long stick.’ She traced her finger slowly across it, then added, ‘I’ll push the stick through the hole.’ She pretended to find this difficult to do but as Sarah reached out to help her, she drew the stick back up to her mouth. ‘You push it through it through the hole,’ she said.

She passed the stick to Sarah and when Sarah had pushed it through the hole, she took it away from her again.

Sarah looked deflated.

‘You don’t have to exaggerate your words though it will be a temptation to do so’ the teacher said. ‘But you must speak clearly and in short sentences. When you get home try practising in the mirror. If you put a slight emphasis on the key words it will help Sarah, but you must keep them in the context of a sentence, otherwise Sarah won’t learn words like “the, through, and, round, in” and these are important for the sense of the sentence. At the beginning you’ll find “action” words will be easier for Sarah to understand because she will see their movements. So try using words like “pushing, pulling, running” and “jumping”.’

I stared at her, mesmerised by her glossy pink lips, and tried to make sense of it all. As far as I could tell Sarah wasn’t understanding anything that was being said to her. As for me, it was like trying to learn a foreign language. Why wasn’t Sarah being taught to say words? Why did the teacher put earphones on her? Why couldn’t Sarah play with the toys?

‘If you bring the toys up to your mouth it will encourage Sarah to watch your lips for information,’ the teacher’s voice interrupted my thoughts. ‘Some people call it face-reading because information is gained from the whole face and not just the lips.’

Information, what information? I tried to look as if I understood the whole magical process, a process which was so far removed from my experience that it was impossible for me to understand.

‘Why can’t Sarah play with the toys?’ I asked.

‘Because she would be looking at them and not at your face.’

I was pleased with Sarah. She looked calm but I knew that, inside, she was like a taut ball of wire, waiting to spring. It would happen. After we had left the teacher’s presence Sarah’s frustration would find release.

‘Here’s a horse. It’s got some eyes.’ The teacher pointed to the horse’s eyes and then her own. ‘The horse has a nose. You have a nose.’ She touched Sarah on the tip of her nose. Sarah stiffened.

The lesson dragged on interminably until the merry-go-round was complete. At last Sarah could play and I could ask the questions I had stored for over a month.

‘Will Sarah have to go to boarding school?’ This had worried me so much I hadn’t been able to sleep.

The teacher helped Sarah to undo the screw on the merry-go-round before she answered me. ‘Some Authorities do make boarding school placements but we think a child should be helped by the mother in the home. You see, if parents learn to help their children from the beginning, their support usually continues right through the child’s education. When Sarah starts school she will go to the school for the deaf.’

Then I asked the question which had tormented me even more. ‘Will Sarah learn to talk?’ That was all I wanted to know. In the last month I had alternated between thinking deafness was a handicap of immense proportion, or a sad, but nevertheless minor, inconvenience.

The teacher drew in her breath as if she was preparing herself for something unpleasant. ‘I can’t tell you whether Sarah will learn to talk’ she answered. ‘No one can. A lot will depend on how much you are prepared to put in. We’ll just have to wait and see how much she develops. It will take a long time. Hearing children listen for many months before they say their first word. If you do these sessions at home and talk as much as possible, then you will be giving her the best chance she will have for learning language.’ She opened her handbag and took out a package containing an ear mould. ‘Have you brought Sarah’s hearing aid with you?’ she asked.

I handed Sarah’s hearing aid over together with the harness I had made the week before. It had a pocket at the front to hold the hearing aid and straps to go over Sarah’s shoulders and around her chest. To keep the aid in place I had sewn on a button and a small piece of elastic to loop round it.

‘It may take Sarah a little time to get used to wearing an ear mould so if she objects don’t force her’ the teacher said as she slipped the harness over Sarah’s head. ‘Let her wear it for a few minutes each day and build it up until she’s wearing it all the time. It will become as routine for her to put on the aid in the morning as it is to put on her vest.’

I thought of the fight I had with Sarah each morning to put on a vest and marvelled at the way the teacher made it sound so easy.

‘When you speak, your voice will go into the receiver here at the top of the aid and be amplified. Look I’ll show you.’ The teacher told Sarah to bend her head on one side while she pushed the ear mould gently into her ear, then she switched the aid on and turned the volume control to number three. At that point a whistle blasted from the earpiece.

‘When this happens you’ll have to turn the hearing aid lower,’ the teacher said, as she adjusted the control. ‘Sound escapes from the ear mould if it doesn’t fit tightly enough and then you’ll get a whistle.’

Sarah started shaking her head from side to side, disliking the feeling of a strange object in her ear.

The teacher quickly removed it. ‘Don’t make a big thing of the aid,’ she advised. ‘Get her used to it slowly.’

She stood up to indicate that the lesson was at an end, and I began to gather up the paraphernalia which would accompany us from now on. The ear mould and the lead, the hearing aid and the batteries, the auditory training unit, and the box with the borrowed merry-go-round in, then I thanked her.

As we walked from the building, I considered the job I had been given to do. It was my responsibility to help Sarah to speak. To speak when she had never heard the sound of her own voice, had never heard my voice either. I was unprepared and felt totally incapable of carrying out such an undertaking. Yet Sarah depended on me.

While we were at the clinic I had left Joanne with my friend Pauline and, after I had picked her up, I raced home to try the hearing aid on Sarah. I had a desperate need to see if she could hear and couldn’t wait a moment longer.

At home I placed the harness over Sarah’s shoulders . . . and removed it when she began to scream. I was determined to do this thing properly even if it did require waiting. I wasn’t going to give Sarah the chance to think the hearing aid was important to me, no matter what it cost to curb my impatience.

When lunch was over, I carried Joanne upstairs to her cot, then returned to the kitchen. I lifted Sarah on to a chair by the table and placed the merry-go-round on the floor before sitting opposite her to begin the lesson.

‘Sarah’ I said clearly. ‘Here’s a horse.’ I raised the horse to my mouth. ‘It’s got a nose.’ I touched my nose and then Sarah’s. She spat at me, stood up on her chair, leaned over the table and snatched the horse from me. When I moved to take it from her, she screamed and threw the horse across the room.

Disheartened, I pulled another piece of the merry-go-round from the box and held it to my mouth. Sarah began kicking and stamping her feet. And that was it. The lesson was over.

I picked the toy up and put it back in the box. Only then, when it was out of sight, did Sarah stop her awful screaming. Her actions seemed to say, ‘I’ll work with the teacher but I’m damned sure I’ll not do homework as well!’

And once Sarah had made up her mind about anything, nothing would change it.

From Children of Silence by Kathy Robinson, published by Victor Gollancz, London, 1987

The month in which we waited for the appointment with the teacher of the deaf passed slowly. When the day finally arrived Sarah and I made our way to the clinic three miles from where we lived.

We entered a square hallway and through one of the doors leading off it, I saw a lady sitting opposite a small boy was holding a feather between his teeth. Sarah would soon be doing that, I thought. Learning how to pronounce words properly.

Another door opened and as the teacher ushered a small girl from her room, my heart jumped when I saw her black hearing aid. It was strapped to her chest, blatantly ruining the front of her dress.

The teacher greeted me and said ‘Hello’ to Sarah. She was well-groomed and self-assured, and this made me feel even worse than I had before. If Sarah needed a professional like this to help her, what could I possibly have to offer? She had a specialist knowledge of deaf children and I had none.

Sarah was asked to sit at a small table upon which stood a machine and a pair of earphones. The teacher placed the earphones over Sarah’s head and adjusted them to fit her ears tightly. She switched the machine on and spoke into a microphone which hung from a cord around her neck. ‘One, two, three. Hello, hello. Testing. Testing.’ When she was satisfied it was working she looked up at me. ‘This is an auditory training unit,’ she explained. ‘It amplifies sound. I can adjust it to suit Sarah’s hearing loss. This knob here boosts the high tones and this the low tones. That dial there tells me how loud my voice is. I have to keep it on a level which makes the needle stay on the red line.’

I watched the needle as it wavered near the red line and saw it fall when the teacher stopped speaking. Sarah was fascinated too. It surprised me she hadn’t made a fuss about wearing the earphones. They were far too large and cumbersome for a child.

‘If you watch everything I do,’ the teacher went on, ‘then you’ll be able to copy the session at home with Sarah.’ She held the microphone near her mouth. ‘Hello Sarah’.

. . . I moved forward in my chair to interrupt. I would have to explain that Sarah didn’t know her name. I had been saying ‘Sarah’ for years. Surely she realized that Sarah couldn’t hear.

On the floor by her teacher’s side was a large cardboard box, and, as the lesson progressed, she pulled pieces of a toy merry-go-round from it and joined them together with gaily painted nuts and bolts. I concentrated on every move she made. I noticed she spoke clearly and that she held the pieces of the merry-go-round up near her mouth.

‘Here’s a stick,’ she said. ‘A long stick.’ She traced her finger slowly across it, then added, ‘I’ll push the stick through the hole.’ She pretended to find this difficult to do but as Sarah reached out to help her, she drew the stick back up to her mouth. ‘You push it through it through the hole,’ she said.

She passed the stick to Sarah and when Sarah had pushed it through the hole, she took it away from her again.

Sarah looked deflated.

‘You don’t have to exaggerate your words though it will be a temptation to do so’ the teacher said. ‘But you must speak clearly and in short sentences. When you get home try practising in the mirror. If you put a slight emphasis on the key words it will help Sarah, but you must keep them in the context of a sentence, otherwise Sarah won’t learn words like “the, through, and, round, in” and these are important for the sense of the sentence. At the beginning you’ll find “action” words will be easier for Sarah to understand because she will see their movements. So try using words like “pushing, pulling, running” and “jumping”.’

I stared at her, mesmerised by her glossy pink lips, and tried to make sense of it all. As far as I could tell Sarah wasn’t understanding anything that was being said to her. As for me, it was like trying to learn a foreign language. Why wasn’t Sarah being taught to say words? Why did the teacher put earphones on her? Why couldn’t Sarah play with the toys?

‘If you bring the toys up to your mouth it will encourage Sarah to watch your lips for information,’ the teacher’s voice interrupted my thoughts. ‘Some people call it face-reading because information is gained from the whole face and not just the lips.’

Information, what information? I tried to look as if I understood the whole magical process, a process which was so far removed from my experience that it was impossible for me to understand.

‘Why can’t Sarah play with the toys?’ I asked.

‘Because she would be looking at them and not at your face.’

I was pleased with Sarah. She looked calm but I knew that, inside, she was like a taut ball of wire, waiting to spring. It would happen. After we had left the teacher’s presence Sarah’s frustration would find release.

‘Here’s a horse. It’s got some eyes.’ The teacher pointed to the horse’s eyes and then her own. ‘The horse has a nose. You have a nose.’ She touched Sarah on the tip of her nose. Sarah stiffened.

The lesson dragged on interminably until the merry-go-round was complete. At last Sarah could play and I could ask the questions I had stored for over a month.

‘Will Sarah have to go to boarding school?’ This had worried me so much I hadn’t been able to sleep.

The teacher helped Sarah to undo the screw on the merry-go-round before she answered me. ‘Some Authorities do make boarding school placements but we think a child should be helped by the mother in the home. You see, if parents learn to help their children from the beginning, their support usually continues right through the child’s education. When Sarah starts school she will go to the school for the deaf.’

Then I asked the question which had tormented me even more. ‘Will Sarah learn to talk?’ That was all I wanted to know. In the last month I had alternated between thinking deafness was a handicap of immense proportion, or a sad, but nevertheless minor, inconvenience.

The teacher drew in her breath as if she was preparing herself for something unpleasant. ‘I can’t tell you whether Sarah will learn to talk’ she answered. ‘No one can. A lot will depend on how much you are prepared to put in. We’ll just have to wait and see how much she develops. It will take a long time. Hearing children listen for many months before they say their first word. If you do these sessions at home and talk as much as possible, then you will be giving her the best chance she will have for learning language.’ She opened her handbag and took out a package containing an ear mould. ‘Have you brought Sarah’s hearing aid with you?’ she asked.

I handed Sarah’s hearing aid over together with the harness I had made the week before. It had a pocket at the front to hold the hearing aid and straps to go over Sarah’s shoulders and around her chest. To keep the aid in place I had sewn on a button and a small piece of elastic to loop round it.

‘It may take Sarah a little time to get used to wearing an ear mould so if she objects don’t force her’ the teacher said as she slipped the harness over Sarah’s head. ‘Let her wear it for a few minutes each day and build it up until she’s wearing it all the time. It will become as routine for her to put on the aid in the morning as it is to put on her vest.’

I thought of the fight I had with Sarah each morning to put on a vest and marvelled at the way the teacher made it sound so easy.

‘When you speak, your voice will go into the receiver here at the top of the aid and be amplified. Look I’ll show you.’ The teacher told Sarah to bend her head on one side while she pushed the ear mould gently into her ear, then she switched the aid on and turned the volume control to number three. At that point a whistle blasted from the earpiece.

‘When this happens you’ll have to turn the hearing aid lower,’ the teacher said, as she adjusted the control. ‘Sound escapes from the ear mould if it doesn’t fit tightly enough and then you’ll get a whistle.’

Sarah started shaking her head from side to side, disliking the feeling of a strange object in her ear.

The teacher quickly removed it. ‘Don’t make a big thing of the aid,’ she advised. ‘Get her used to it slowly.’

She stood up to indicate that the lesson was at an end, and I began to gather up the paraphernalia which would accompany us from now on. The ear mould and the lead, the hearing aid and the batteries, the auditory training unit, and the box with the borrowed merry-go-round in, then I thanked her.

As we walked from the building, I considered the job I had been given to do. It was my responsibility to help Sarah to speak. To speak when she had never heard the sound of her own voice, had never heard my voice either. I was unprepared and felt totally incapable of carrying out such an undertaking. Yet Sarah depended on me.

While we were at the clinic I had left Joanne with my friend Pauline and, after I had picked her up, I raced home to try the hearing aid on Sarah. I had a desperate need to see if she could hear and couldn’t wait a moment longer.

At home I placed the harness over Sarah’s shoulders . . . and removed it when she began to scream. I was determined to do this thing properly even if it did require waiting. I wasn’t going to give Sarah the chance to think the hearing aid was important to me, no matter what it cost to curb my impatience.

When lunch was over, I carried Joanne upstairs to her cot, then returned to the kitchen. I lifted Sarah on to a chair by the table and placed the merry-go-round on the floor before sitting opposite her to begin the lesson.

‘Sarah’ I said clearly. ‘Here’s a horse.’ I raised the horse to my mouth. ‘It’s got a nose.’ I touched my nose and then Sarah’s. She spat at me, stood up on her chair, leaned over the table and snatched the horse from me. When I moved to take it from her, she screamed and threw the horse across the room.

Disheartened, I pulled another piece of the merry-go-round from the box and held it to my mouth. Sarah began kicking and stamping her feet. And that was it. The lesson was over.

I picked the toy up and put it back in the box. Only then, when it was out of sight, did Sarah stop her awful screaming. Her actions seemed to say, ‘I’ll work with the teacher but I’m damned sure I’ll not do homework as well!’

And once Sarah had made up her mind about anything, nothing would change it.

This extract is from Gregory S. (1976/1995) The Deaf Child and His Family. London, George Allen and Unwin. Reprinted as Deaf Children and their Families. Cambridge, Cambridge University Press.

Apart from equipment, special help for young deaf children is available in the form of teaching. Relative to other handicaps, the young deaf child is reasonably well provided for by a peripatetic service of qualified teachers who usually visit parents and children in their homes though in city areas the parents and children may visit a central clinic. Ideally these visits are once a week.

Sessions with a peripatetic teacher could take various forms. Some parents found the emphasis was on the teacher teaching the child.

Boy, 3 years, moderately deaf
He used to bring games and puzzles, and do things to get him to look. That was the main object, to get him to look at your face

Boy, 5 years, moderately deaf
It was sensible. I mean it was just showing you games. Probably you couldn’t see much point in a lot of it, you know. Hiding things under cups and telling him to tell you which one it’s under, but I suppose it was all getting general language into him.

More often though the teacher’s role was to show the mother what sort of things she could do with her child.

Boy, 5 years, severely deaf
Basically, he came to encourage me. He said he was making progress, even if I couldn’t see it.

Boy, 3 years, moderately deaf

I learnt off the teacher what to do with Shaun. Otherwise I don’t think I should have known how to go on with a deaf child.

Boy, 3 years, partially hearing

He tries to give me guidance, you know. He’ll try and give little things to do with Billy just to see how we get on with them – that sort of thing.

Mothers, while appreciating the teacher coming in and teaching, found it far more worthwhile for the teacher to discuss with them the things that parents could do. In fact, most advice to peripatetic teachers stresses the need for them to work with and through the mothers, rather than just the child. As a report on the work of the peripatetic service puts it:

It has to be made clear that these sessions are for the purpose of helping the parents of young children to understand the nature of their child’s disability, and its effects which include lack of normal means of communication. The teacher’s role lies in convincing the parents that since facility in spoken English follows progressive stages and can be developed, they have an active part to play. Through purposeful guidance over a period, parents can be encouraged to accept increasing responsibility for this growth of oral language and to make fewer demands on the teacher’s time.

One mother went to great pains to point out how much more sensible it is to work though the mother, as she is in a far better position to spend time teaching the child than the teacher.

Girl, 6 years, severely deaf

He was very good but not in an obvious sort of way. I didn’t think he was that good to start with, because he didn’t seem to be getting down to anything, but very obviously in the end this was more than what was needed. Half an hour or an hour he came for, and in an hour how little he could have taught Janet was really negligible and I think he’d sorted this out. By comparison, the amount he could teach me to teach her during the week was immense.

There are many things the teacher has to get across to the parents. The basic aim of most teachers at this stage is to introduce to the child the idea of communication through the spoken word. Understanding of the spoken word for the deaf is usually through a combination of reading the lip movements and listening to the amplified sound they receive though their hearing aids. One of the important aims then is to get the child to look at the face of the speaker. Here, the teacher who gave advice as to how this could be done, other than just that this should be done, was an immense help.

Girl, 4 years, severely deaf

I have to get her to look at my face.

(Q: How do you do this?)

Well I just put her in front of me and try to tell her. I tell her as I would Nicholas, her brother, but clearly, and show her as well as telling her. While I’m telling her, I’m showing her at the same time.

One important thing arises from this emphasis on the deaf child looking at the face, for while he is looking at a speaker’s face he cannot be looking at what he himself is doing. This means that one very common aspect of mother-child communication is missing, that where the mother describes to the child, or talks with him about what they are doing. It means that any commentary on a game involves interrupting the game. It means that naming objects or pictures cannot be accomplished while the child is looking at them; instead he must hold the image while his mother tells what they are. Getting used to this can be very difficult.

Girl, 4 years, severely deaf

We’ve had to teach her to watch. You have to say ‘Look’, and point to your mouth. There’s one thing I do not realize, I used to say ‘Look at the cat’ and point at the same time, so that she turned around and looked and missed what I was saying, but in time somebody pointed this out.

It also means that whereas mothers of deaf children are often aware that they need to spend a lot of time talking to, and playing with their children, this can be more difficult than with normal children. The interaction required is not a simple or natural one but one which leads to constant interruptions and this makes it more difficult to sustain interest in such games.

As has emerged from the preceding paragraphs, it is necessary for a mother of a deaf child to spend a great deal of time talking to her child. No one can totally compensate for the deaf child missing the incidental conversation which accompanies ordinary everyday activities and is the background to most normal children’s lives. However, the more the deaf child is talked to, the more he will learn about language.

For some mothers this came easy. Usually these mothers had talked to all their children and happily gave a running commentary on anything that was going on.

Boy, 4 years, moderately deaf.

I just talk to him. I mean it’s no good being silent all the time. You can’t. Even if he can’t hear. You’ve got to talk to him really.

Girl, 3 years, moderately deaf

Well I don’t stop talking at any time. If anything I talk more. When I’m walking along holding her hand I talk all the time, generally making conversation that you wouldn’t do, a running commentary as we’re walking. I think I do it automatically. Someone told me the more I talked the better she’ll be, so I just talk all the time.

Some mothers acquired the habit out of necessity.

Boy, 3 years, moderately deaf

If you’ve got a deaf child you probably talk to them more than you would a normal child anyway. Because I don’t think the average parent actually talks to their children very much, but if you’ve got a deaf child you’ve got to talk to them to make them understand, otherwise they don’t hear. So all day you’re really talking to them, repeating what they’re doing and what they’re saying, without even thinking about it, so that it becomes a habit.

For many mothers, to talk to their child constantly was difficult.

Boy, 2 years, profoundly deaf

Earlier I did not tend to speak because I thought ‘Well he can’t hear so it’s not worth it.’ But I discovered, of course, that you should talk to them all the time, so now I try to talk to him a lot. It is difficult. Mr. ——- (the peripatetic teacher) says every time he looks at you, you should try and have something to say – in fact all the books say that, but it is difficult. It might be better when Anna’s (his sister) at school, because it will be so quiet I’ll find myself talking to him I think, like you do a baby. But I did tend before not to speak, it was almost subconscious.

Girl, 2 years, profoundly deaf

I don’t find myself talking every day. I’ve just not got that patience, and it just doesn’t come. I suppose if you did keep doing it, it should come natural to you. I haven’t found myself making that effort to do it. I do do it sometimes, naturally, but it should be more of a natural thing I suppose.

Some mothers find the whole idea a bit impractical.

Boy, 3 years, partially hearing

The only thing I do find difficulty with – they say you must talk to the child every minute of the day, and they don’t take into account what you’re doing. Well I don’t find it easy to do. If I could go at Neil’s pace it would be better, but with other members of the household to look after, and cooking and housework to do, it’s impossible. I mean I can’t be washing dishes up in the sink and talking to him at the same time. It’s probably all right but it doesn’t work out in practice.

It must be remembered that talking to a deaf child requires more effort.

Girl, 6 years, severely deaf

It’s just more difficult talking to her. You do get used to it, but even then it is a bigger strain having her sitting up in the evening than Sharon (her sister). You have to keep talking to her all the time. It’s an effort when you’re tired to be patient and to talk.

– and takes longer.

Boy, 3 years, severely deaf

I think it is something to do with the deafness – it takes quite a while to get things through on occasions. But if I point, which makes it easier for Paul, he does it quicker, but if I try to make him spend the time understanding what I’m saying it takes longer.

As one mother explained – learning to talk to one’s child in this way is a skill.

Girl, 6 years, moderately deaf

I think I realize now – I mean – people say to me, and all the books you read, and all the people you talk to, carry on about this business of talking to the child, talk, talk, talk, talk, talk, to the child. This is what they say. Now this I didn’t find easy and neither did my husband. He probably found it easier than I did though as I say he misses the exchange of conversation he would have had with Carol if she’d been a normal hearing child, but I am not a chattery sort of person. I like to be quiet. When Carol was occupied with something my attitude was that she’s happy, let’s leave her alone. I don’t agree with interrupting children when they’re playing. Some people do. I mean, some people never seem to let them play by themselves, but of course I realize now I should have talked to Carol more. This is a skill, it’s a skill I think you’ve got to learn.

My children

I have four daughters; my two older daughters Joanne and Nicky are now in their late 30s and married, and my twin hearing-impaired daughters, Alex and Beth, are 30 years old. I was well throughout the pregnancy with them and their delivery was without complications. In fact, Beth popped out 15 minutes after her sister Alex. They weighed 6lb 10oz and 6lb 6oz – so good sizes for twins. On their discharge from hospital they were pronounced hearing by the doctor.

Two months after their birth I took them to church on Easter Sunday. I thought it strange that they stayed asleep whilst during a drama one of the youth group shouted in a very, very loud voice and they didn’t respond. Another child of the same age screamed very loudly and needed to be taken out of church.

I breastfed them at the same time (to save time) until they were a year old but I thought it was a little strange that they didn’t look at each other or respond to each other during that time. They played together as they grew older and they turned around and sat up on their knees in their double front facing buggy to look out at the world. This was something I hadn’t seen other children in double buggies doing.

Alex and Beth didn’t look when I entered the room unless someone with them looked up. It was then I began to think that they were not hearing. This was before the days of being able to accurately test for deafness at that young age. I was assured they were OK by everyone around me. They began to babble which sounded normal so I felt encouraged by that BUT I didn’t know, until catching part of a TV programme on deafness I had on while ironing, that it is normal for deaf children to babble BUT the babble doesn’t mature into speech for an unaided deaf child.

At this point I became more and more convinced that they could be deaf despite being told by those around me that they were not. Eventually, when they were 10 months old, I made an appointment to see the audiologist and they were both diagnosed profoundly deaf two days before Christmas. They were given temporary hearing aids while their own moulds were made and these were fitted after Christmas. They had a waistcoat with pockets in them kindly made by our hospital Teacher of the Deaf/audiologist for their body worn radio aids. She made harnesses to fit the season and there was a big letter A on Alex’s and B on Beth’s so that others and sometimes ourselves were able to tell them apart. Alex had red shoes and Beth had blue shoes which was also to help them know which was which.

Our first visit 30 years ago to a deaf children’s party at the local deaf centre really upset me. They were playing party games like musical bumps with a lamp being turned on and off to tell them when the music started and stopped. None of the children were saying anything but they were signing. It made me think that my children were going to have to live their lives without speech and not be able to hear music and laughter and jokes and learn in a class with children they knew from home. Most of those children were at boarding schools for the deaf from three years of age. I was devastated at that thought for Alex and Beth. I could not even consider that as an option, but was that going to be our only choice?

How things have changed since those days 30 years ago. Now babies are checked and diagnosed for deafness electronically very soon after birth. They are fitted with cochlear implants if that is the parental wish from one year onwards and they often go into school at five years old with age appropriate language. They find it much easier to make friends and do the things that hearing children do. Alex and Beth both had their first implant when they were 13 years old although unfortunately these slowly failed and were replaced a few years ago.

Do they generally appreciate the friendships of deaf peers? Definitely. This is why our family has been committed to the local Deaf Children’s Society throughout the last 30 years. Many parents and children still appreciate, alongside the support from services, talking to other parents and meeting other children to share activities where everyone can feel included. The local Deaf Children’s Society had 130 people attending the annual garden party last year and about the same number at the Christmas party, where the children hear the music, do musical bumps, and have a wonderful time together. Deaf children can now also enjoy friendship with hearing peers so much more easily these days with improved technology.

Alex and Beth still continue to struggle to pick up all the sounds they need to hear for language because of their slow start and they both greatly struggled at university. However, they did, with lots of support, both gain an upper second-class degree in Occupational Therapy. It is common place now for young deaf people to go off to university or college to further their education and skills.

The family

My husband had a different journey to me and he found it very difficult to come to terms with Alex and Beth’s deafness. He felt they had no quality of life ahead of them. They were eight years old before they had useful language and it was only as they began to use language that my husband came to terms with their hearing loss. Is it still difficult? Yes. Has it changed all of our family for the better? Yes.

Alex and Beth are beautiful people with hearts for deaf children and their families. Joanne as a doctor and Nicky as a teacher would both say that the experience of having Alex and Beth as their sisters has enriched their lives and helped them care for the vulnerable. Nicky teaches primarily special needs young people. She learnt her skills in teaching by supporting a young boy with autism as a teaching assistant before training. Both Joanne and Nicky would say that Alex and Beth taught them a lot in preparation for their chosen careers.

Is it easy for Alex and Beth in the work place? No. Beth has full time communication support from an interpreter as she is an occupational therapist in a hospital where the conditions make it very hard for her to hear due to bad acoustics and not always having direct vision to lipread staff. Looking after elderly patients and dealing with families during discharge planning can be difficult. Does she do a good job with that support? Yes. Alex and Beth are very gifted in many ways and are very good hearted. Alex did a two-day course on dry stone wall building and came back and took down our half collapsed 12 metre dry stone wall which she and Beth rebuilt last summer. The two of them scheme to redesign our house and garden, re-laying patios and paths, decorating, planning the demolition of our garage and building an extension in its place. They cook, entertain, take meals to sick people and get involved in community projects. They have good friends and they are admired and respected for their determination to make their life count.

Education

I would say that education has been the hardest part of the journey for Alex and Beth. Three days after their diagnosis we were very fortunate to find out that we had a very experienced expert in deaf education living in our village, Con Powell. Con and his colleagues had done a lot of research into the pros and cons of all of the communication modes used by deaf children and the outcomes. He and colleagues set up a charity called DELTA, Deaf Education through Listening and Talking. He talked to us for hours about deaf education amongst other things and recommended we looked at different provisions across the country. This was extremely valuable to us making our decisions about education.

Con arranged for us to visit a resource base provision using a natural aural approach, a school for the deaf using a natural aural approach and a school for the deaf using a signing approach. We went to visit the schools and made the decision that a natural aural approach that we could all use easily at home with natural gesture was the way forward for us. We felt this could give the girls the best opportunity of a rich and integrated life both at that time and in the future. We went on courses with DELTA and implemented that philosophy.

When Alex and Beth were diagnosed nearly 30 years ago locally all deaf children were educated in their own classroom. Leicestershire education authority accidently discovered that hearing-impaired children could thrive in a mainstream classroom using a natural aural approach. Shortly after that Oxfordshire started to educate hearing-impaired children in mainstream schools with resource base support and trained Teachers of the Deaf in the natural aural approach.

I then began a journey based on our determination to keep our family together at home and not have to send Alex and Beth to a boarding school for deaf children. Our older children Jo and Nicky were brilliant with them, playing games, reading to them and encouraging them to do sports, which was a huge bonus. When Alex and Beth were seven years old they went to train with their county tennis team but they felt very isolated and not able to follow conversations. Now Alex is captain of one of the local club’s A team where they both play. They have both played international deaf tennis over the years and I think that has also helped them learn how to socialise better with hearing people.

The girls went to the local mainstream play group, and then into a local independent school at four years old. The play group gave them independence, friends and their parents who loved and cared for them inviting them to parties and play dates. From there I started a music group at our home and we had instruments and sang songs with actions and then had some play time. That was really valuable. Mums around us got to understand about deafness and more importantly so did the children. Interestingly we met up with a couple who subsequently emigrated to Australia when they were visiting our village last week. We got together with others of the music group and they all reminisced about the value of that group to them and their children and how their children benefited from knowing Alex, Beth and two other hearing-impaired children.

The girls went from playgroup to an independent local school which uniquely was funded by the Local Authority. The daily support from the hearing-impaired service was excellent, but it was difficult for some of the mainstream teachers having this outside support where the girls were taken out for individual and focussed teaching. From a friendship point of view the placement was amazing. Alex and Beth were very much loved and invited to parties, we invited the whole class to parties and they all came and their relationships were wonderful. The hearing children tried hard to be inclusive and the majority of parents were a great support to both them and me. We did have issues with some of the staff who really did not understand how to meet Alex and Beth’s needs but others who were brilliant. Being an independent school the pressure from parents for their children to be high achieving was great.

Later we were advised to move Alex and Beth to a local state school so we did. This school also worked socially really well. The girls had lots of friends and invitations to play and were really happy. However, one really traumatic experience for them caused us to withdraw them into the local hearing-impaired resource base.

I will describe this experience. The girls were working with the teaching assistant (TA) in a quiet room. Alex asked if it was break time and the TA said something that Alex thought was yes. She got up and packed her things and left the room. Beth left shortly afterwards because it was almost break time. The TA went into the staffroom and said “you wouldn’t believe what Alex has just done, she has just walked out of my lesson”. After the break, the girls went into their lesson and the class teacher shouted at Alex so loudly that the head teacher heard it down the corridor and called the Teacher of the Deaf and me to the school. Alex just sat scared and shocked by the teacher and had no idea what the problem was and why the teacher was shouting at her. Beth started to cry and was sent out of the class, Alex remained paralysed with absolutely no idea why this was happening. The Teacher of the Deaf arrived and I was called and we took the girls home. The outcome was that, on advice from the hearing-impaired service, we took the girls from that school into the hearing-impaired resource base school. Both girls were very traumatised by the outburst from the class teacher as they had no idea what it was about. For years they cried when they talked about it.

The girls finished their primary education in the local resource base school. We considered Mary Hare at that point but were persuaded by the service to keep them in mainstream secondary provision. We decided to go along with that advice but, although the resource base provision was good, the mainstream teaching was not well accessed by the girls, particularly Alex. They also found themselves very isolated from their hearing peers. They sent a birthday party invitation out to the whole of both of their classes, only one person replied and only one girl from school came and she had a moderate hearing loss. That was a very damaging experience for both the girls.

After three years we made the decision for them to go to Mary Hare as day girls as it was so close to us. They repeated Year 9 as they had missed so much and continued through Mary Hare and on to University. Mary Hare again gave them a good peer group and was close enough for them to continue their competitive tennis at our local tennis centre. They both had passed their driving test when they were 17 years old and so drove themselves daily to school.

After finishing school, Alex and Beth went to do a gap year working with children and youth in a New Frontier Church, Alex in Luton and Beth in Milton Keynes. The following year they both went to University to study occupational therapy. Alex went to Northampton and Beth to Oxford Brookes. Both got 2:1 degrees but there were inevitable gaps in their knowledge and understanding. Alex didn’t have the confidence to work as an occupational therapist (OT) and got a job as a TA in Mary Hare School. She was eventually able to use her OT skills supporting students with physical needs and liaising with the OT and physiotherapist who visit the school, staff and parents of the young people. Beth got a job as an OT, also locally, and has gradually been filling gaps in her training and increasing her caseload as she is inevitably still slower than her peers. Both Alex and Beth have had good support from their line managers at work.

My conclusions

Technological progress has transformed the outcomes of profound deafness over the last 30 years. Cochlear Implants have transformed the ability of profoundly deaf children to thrive in mainstream schools academically. They have also allowed children and adults to hear conversations, music and theatre etc. but there are still limitations. Few theatres have captioned performances or British Sign Language interpreters to support hearing-impaired members of the audience in following the spoken word.

The integration of deaf children into mainstream schools has transformed the understanding of deafness by mainstream teachers, hearing children and their families. Mainstream experiences for deaf children can vary considerably and some young people can feel isolated socially from their hearing peers. It is therefore important to actively promote integration in school and in the community. Some, but not many children, still need specialist schools for the deaf to feel happy, relaxed and accepted because they are in an environment where their peers are deaf and their staff are very deaf aware.

When Piers was eight and a half months old, we were told by a Teacher of the Deaf that he was profoundly deaf. She told us not to worry, that if we worked hard, used his hearing aids at all times, then he would develop quite normally but at a slower rate than his hearing peers. She also told us categorically that using sign language with him would mean he would never learn to talk. Both statements are false.

What she said “felt” wrong to us. We decided before he was born that we would try not to impose our own needs over those of the child; that if important decisions had to be made, we would consider their impact on the future adult he would be. Having got over the initial shock of the diagnosis we settled down to life with our deaf son, never for a moment wishing to turn him into a hearing child.

We read as much as we could about deafness. We read about deaf education and the poor results achieved using the oral/aural approach shocked us and we sought advice from many people including deaf adults, believing them to be the best people to understand the full implications of the situation and advise us properly. We were given a lot of varying advice but we decided we must add signing to our programme and started at once.

Friends with a hearing child were bringing him up bilingually, each using a different language with him in the home and we aimed to do the same with Piers but our main problem was that we had no knowledge of the second language! Because I am very poor at languages and because we intended to continue to use Pier’s hearing aids, to help him utilise his residual hearing and try to develop his lip reading skills, we chose Sign Supporting English as the signing code we would both use at first. However, we did not want our ineptitude to keep Piers from having access to both his mother tongue and good deaf adult role models as soon as possible, so we asked some of the deaf people we had met to help us.

Soon deaf acquaintances became friends, helping us to ensure that Piers regularly had BSL bedtime stories, contact with signing deaf children, visits, outings and as much exposure to good BSL as we could manage. As he grew older, Clive’s ability to communicate in the new language increased and both he and our deaf friends helped me to incorporate many BSL features in my SSE, so that my signs gradually became less inappropriate. Piers rapidly learnt the art of code switching, using SSE when he and I played, worked at our daily oral/aural lessons or read together and BSL with deaf people and for his increasingly intense conversations with Clive. When he was two and a half we rented out a room to a young deaf man, who lived with us happily for over two years.

Piers began to read very early and adored books; whenever we went out shopping I would buy him a book as a treat and very soon I had to take him to the library two or three times a week to keep up with him. He had one or two hearing friends and with one of them attended an ordinary playgroup for a couple of hours a day from when he was two and a half to when he was four and a half.

Piers went to Heathlands Schools in St. Albans when he was four and a half. There he was taught using Total Communication methods. We continue to spend a small fortune and many hours travelling time to locate good, soft earmoulds in a continuing attempt to get some sound in his poorly functioning ears. Signing never, ever stopped him using his voice. After he went to school he began to try very hard to speak, working hard at formal speech therapy and taking informal corrections from us. His speech and lip-reading ability were fairly average for a very deaf little boy but his understanding and his school work above average. Some of his speech was understood by his teachers, family and close friends; some, particularly as his sentence construction was advanced, would have been impossible to understand without the clues that signing gave us. None of us suffered frustration because we were unable to understand each other, although we did find it tiring constantly having to explain what was happening on TV, at the theatre, or in mixed deaf/hearing gatherings.

We attended the Nuffield Centre annually for Piers to have an audiological check. When he was nine, his audiologist, Dr. Lim, said it was a pity that he was over their age limit for referral for a cochlear implant as she considered him a perfect candidate. I was shocked. Both Clive and I were strongly opposed to parents taking decisions on invasive surgery for children unless it was a matter of serious illness. We believed it breached the rights of the child. She pointed out that although she could not refer him to Nottingham, if I wished she could let me know of other options for cochlear implant tests for him. I said ‘No thank you’ and gave it no further thought.

When he was ten we arrived at the time for another crucial decision to be taken. Which secondary school would he go to? Leeds was impossible as it has no residential school. We all went up to Scotland to look at Donaldson’s School, which Clive and I thought would probably be the best place for him to continue his education but Heathlands began to press for him to take the entrance exams for Mary Hare. He and his school friends seemed very keen to go there and we all went to have a look without really considering it as a viable option. We noticed that all the children signed to each other outside their classes and all seemed relaxed and happy.

Piers passed the exams and was offered an interview. I was very opposed to going any further but Piers was equally opposed to going to Donaldson’s. We explained about the oral ethos of Mary Hare, about how it really breached our principles. Piers began to reason with us, explaining that he had been to a signing school and now he really wanted was to develop his speech and lip-reading. He assured us that he would be able to cope.

We allowed him to go for the interview; they too thought he would cope and he was offered a place. We decided to allow him to go for one year, reckoning that we could afford to lose a year at this stage if it proved a disaster. We reconciled ourselves with the thought that signing had not only helped him to achieve this standard of education but that it had also given him the ability to understand and make his own reasoned decisions.

He did well at school although he came home every weekend, usually bringing one friend or another. The next Summer he came home from school looking forward excitedly to returning in the Autumn. That was that; the die was cast, he stayed on at Mary Hare.

School work may have been going well but all was not 100% happy at school. Amazingly Piers was getting bullied at school for being deaf! It couldn’t have been his speech, most of his friends at school had speech no better than his, combined with very poor signing abilities. I found I had enormous difficulty in communicating with them. It may have been a result of this bullying that when he was halfway through his second year, he came home one weekend asking about the possibility of having a cochlear implant. It transpired that a boy in his class had had one and it helped his hearing. The thought of having more hearing was very exciting for him.

I was not at all keen and I was pretty certain that at twelve he was far too old to be an acceptable candidate but I agreed to think about it. We then discussed the whole idea within the family throughout the weekend and it was agreed that I should approach the school for their advice. I was referred to the deputy head. Initially he was as surprised as I had been and pointed out that the boy in Pier’s class had not only had meningitis at nine years old but also had experienced enormous difficulties adjusting to the implant. He said he thought Piers’ deafness would be borderline for acceptance on any programme. We decided it would be best to discuss the matter fully with both Piers and Clive present the following week when he would also have a copy of Piers’ most recent audiogram.

At this meeting Piers listened very carefully to all the pros and cons.

I thought there was a lot against it.

• It was a major operation which would remove all the hearing from one of his ears; it was irreversible.
• It would leave a very large scar on the side of his head.
• Other operations might come along in future that were better and if he had this one, he would not then be able to have another.
• He might die on the operating table.
• He was almost certainly too old to be accepted on any of the existing programmes. There would be a long process of selection to go through, lots of travelling to and from hospitals, and after all that he still might not be accepted for the operation. If he had the operation it might be unsuccessful or there might be post-operative complication or infections which could mean having to re-operate to remove the implant and leave him with even less hearing than he had now.
• If the operation itself was successful it might still be of little benefit to him.
• He might be too old now to ever learn to understand spoken language.
• There would be at least two years of speech and language work following the operation; more travelling to and from hospitals in the school holidays.

What there was on the plus side seemed to me to be pretty chancy.

• It was most likely to be successful.
• There was only a very small risk of death, post-operative infections of other complications.
• He would almost certainly be able to hear environmental sounds, car horns and fire alarms.
• warning of danger; door bells, telephones and the like.
• With luck he might be able to hear a great deal more and his brain might, in time, begin to understand the things he was hearing possibly even speech.

Then came the solemn warning that there was no way that this operation was going to miraculously change him into a hearing person. If he did eventually have it, he would hear more than he could now but he would still be deaf.

Well, that came as a great relief to all of us!!

However, Piers said it sounded good to him and he wanted us to go ahead and find a programme that might accept him. The deputy head said he would make some phone calls to various centres.

Mrs. Court, the head of the CI team at Addenbrookes Hospital in Cambridge, rang us a week later to tell us that if we could get funding agreed for the initial testing procedures, then they were prepared to put Piers on the programme. She warned us that is was not very likely they would accept him, as he was much older than the children they had operated on in the past. She explained that we could not have an appointment without an agreement for funding. This would have to come from our GP, who is a member of a fund holding practice and all the money for Piers’ tests would have to come from their practice budget.

This seemed an insurmountable hurdle but I went to see our GP and talked it over; they had a practice meeting and agreed to pay for all his tests! I was also told that if Addenbrookes accepted him for the operation, then North Herts would be prepared to fund all the costs for both the operation and all the post-operative visits. It was amazingly simple!

One month later we all went to Addenbrookes Hospital and met the CI team. It was the start of the arduous procedure of assessment and it necessitated many trips to and from Cambridge over the Summer and autumn of 1993.

Six months later Piers had the operation and in the 1994 Easter holiday, the cochlear implant was switched on.

I am glad that the decision was 100% Piers’. I have done my best throughout the intervening time to support him in that decision. From the first time he has been absolutely determined, sensible, brave and always quietly optimistic. He listened to all the advice he received from deaf and hearing people, from friends and acquaintances, for and against. Then, in a matter of fact way, he decided to go ahead. There was only one moment, when the needle was in his hand and the anaesthetic began that I spotted the fear in his eyes and realised for the first time just how difficult and frightening the decision must have been for him too; his determination had hidden those apprehensions.

Piers is different now but he’s not different because he’s changed into a hearing person. He’s still the same son; my deaf son. Piers is different because he’s happier. Of course he’s still deaf but now, at long last he’d got a decent hearing aid. For the very first time he has a hearing aid that actually works. For us, this means that he now hears me shouting his name; before he couldn’t. He tells me this is what he wants. Certainly he now actually goes looking for new batteries; before he didn’t even know when the battery was flat.

Piers tells me that with his cochlear implant he no longer feels isolated, cut off from the world; he feels that at last he is part of what is going on around him, a part of life. He tells me that he has no regrets, that he has made the right decision, that he would do the same again if he had to make a choice.

Sometimes I worry that he wishes I had made the decision for him earlier, on his behalf.

But I did what I believed was right at the time and I too would do the same again.

Achieving BSL support in school

Paul is currently in year 6 in mainstream school. He is the third of four children in the family, having an older half brother who is deaf and older half sister who is hearing. His younger brother is hearing. His father is deaf, mother hearing and works as a BSL interpreter. He is the ninth generation of deaf in the family (not proven).

Paul is profoundly deaf and during his early years also had glue ear. He did not regularly wear hearing aids until he was nearly four. He was born into a language rich, accessible environment with all significant adults fluent in BSL. He has no additional disabilities or impairments. Mother returned to work part time when he was five months old and he was placed in a nursery three days per week, where the staff had some experience of dealing with deafness. However, despite support from the Teacher of the Deaf and a communication worker once a week, at two years old he was taken out of the nursery placement by his parents who felt his communication needs were not being met. The nursery staff could not communicate to a level of fluency required by an intelligent and articulate deaf child, and he was exhibiting signs of stress and frustration on returning home. His sophistication with language was not sufficiently appreciated or celebrated during these early years, with the majority of professionals working with him being unable to sign fluently enough or appreciate the cultural aspects of deafness which was an integral part of his overall development. It was an isolating time for the family, who relied on extended family (grandmother, also deaf) for child care.

The family declined the services of the local social worker for the deaf, citing personal reasons and the fact that they had sufficient knowledge of deafness. However, they approached the generic social worker from the children with disabilities team. The rationale for this was that the local social worker would have knowledge of services and support available and could take a more holistic view of the family needs. This was a positive experience, as the social worker listened to the family and worked alongside them to set up support which proved invaluable. One of these elements of support was the provision of a sign language interpreter during the summer holidays at the nursery, when the local authority communication worker was not available out of term time. Paul thrived with access to a higher level of BSL in this environment, and the professionals around him remarked at the sudden increase in his fluency following this intervention. It was soon after the cessation of the interpreter support that he had to be withdrawn from the nursery due to his emotional health being affected by the frustrations of language deprivation in the nursery.

At the age of 2 ½ the parents applied for a statement of special educational needs. They went through the usual process of assessment and compilation of this statement. Most of the professionals involved were respectful of the wealth of knowledge the parents had in the area of deafness, yet the one professional most crucial and most knowledgeable in the area proved to be the only one to cause dissension. The Teacher of the Deaf was insistent that the statement should have a minimum requirement of level 2 BSL for Paul’s communication support workers in education. The parents were adamant that they should have a minimum of level 3 and knowledge of deaf culture. Level 2 would not have provided sufficient fluency or understanding of the visual grammar of BSL to supply the bridge required between the two languages and cultures. As a deaf child, Paul saw the world purely visually and therefore his understanding of it was necessarily different from that of a hearing child. He needed someone able to mediate between the hearing schemata and culture as well as language, and that of the deaf world. The parents were successful in stipulating level 3 BSL as a minimum, albeit knowing that in reality he needed someone with a higher level than that. They were also able to influence the pay grade for the post, to ensure that the best candidates were attracted to it.

The local mainstream primary school had experience of integrating a deaf child: Paul’s older brother. They were involved from the onset, and at parental request they were to be the employer of the communication support worker. The usual practice for the area was for teaching assistants for deaf children to be employed by the local authority, but the parents wished for the support for their son to be integrated fully with the school. This was accepted, and the parents were involved in drawing up the job advert and interview questions. The father was on the interview panel, and the mother undertook the skills tests for the candidates. They had to interpret a story being told to a small group of the children, and had time in advance to prepare the story. They also spent time interacting with the deaf child in their classroom. This gave an insight into their interpersonal skills and ability to provide access to more than just the curriculum, but also peer interaction.

The candidates were of high calibre, and the person who got the job was not only fluent in BSL but also bicultural: her husband was deaf. The start of school was smooth and positive for Paul. The school embraced the deafness positively, and arranged for BSL classes for the teaching staff, lunch time supervisors, reception staff and even the head teacher. The parents were involved in the deaf awareness training for all the staff team, and the mother set up a BSL club for the parents so that they would not be daunted at the prospect of inviting Paul to play with their children.

When the communication support worker went on maternity leave, the parents were again involved in the selection of the replacement. It was similarly successful, but by this time the questions were being asked by the parents about ongoing training and support for the communication support workers. It was clear that Paul would eventually outgrow their skill level, and require a more sophisticated level of BSL and interpreting skill. The parents asked that a programme of skills development be provided for the two workers who by this time were job sharing. However there was no funding available for this. They were not able to access formal BSL training to achieve the next level of BSL, namely level 6. They were not able to access any interpreter training courses or individual training programmes, and were deemed to be adequately skilled so as to not need further development input. This shortsighted attitude meant that without support the workers stagnated. Eventually the school agreed to pay for occasional online support sessions for one of the workers, provided through a contact that the mother had with an experienced interpreter and BSL trainer. This was not sufficient to actually enable the communicator to improve significantly. At the end of Year 4, when Paul was 9, the communicators handed in their notice. Their explanation was that he had outgrown them. He was often choosing to lipread the teacher and rely on his radio aid rather than watch the communicators, and they were no longer able to match his level of access needs.

The decision was then taken to bring qualified interpreters (RSLIs) into the school. The timetable was analysed after the first term when he had full time support, and with Paul’s input and the Teacher of the Deaf assessments of teaching style, certain subjects were deemed accessible without an interpreter. By this time, Paul was fully bilingual and able to move from speech, speech-reading and radio aid/hearing aid amplification and BSL. He did, however, require all new information and learning to be presented in BSL, and still depended on the interpreters to mediate cultural information and complex constructions. His strength in maths and the teaching style being very visual meant that he was able to access the teaching of this subject without an interpreter. Similarly, sport was something he thrived at naturally, and the teachers were able to accommodate his needs with the latest radio aids and making the teaching more visual. Paul was able by this time to articulate his own support needs, and feel actively involved in the way in which he accessed the curriculum. These are skills that will stay with him throughout life, enabling him to be an independent learner and worker in the future. He no longer looks to his communicator for ‘help’, but rather for access.

In terms of success, the access to high quality language input at home and early years education meant that Paul has developed fluency in both languages. He is achieving all the academic milestones expected for his age, and is placed in the top set for most subject areas. He naturally struggles with subjects such as French, but is not significantly delayed in any areas. He still requires additional support with written English, but his reading and comprehension is age appropriate. He loves to read for pleasure. He is happy, confident and achieving all the expectations of his age group and learning stage. He gets on well with his peers and enjoys out of school clubs and activities. This would not have been possible had he been denied good quality BSL access in the early years, provided by people able to bridge both the language and the culture of the two worlds in which he lives. The work undertaken to ensure his peers and all staff around him were also comfortable with his deafness means that he does not need to worry about being bullied or singled out as different in his school environment or community. The ‘success’ can be measured by saying that Paul is a ‘normal’ boy without significant educational, emotional or social delays or impairments. He is thriving.

Corvette came into the family with hardly any language, either expressive or internal. The family all used Sign Language as either a first language or second language and our efforts for Corvette were to let her relax in a signing environment and to ‘see what developed’. We offered her security and an accessible environment where we hoped she would learn to have an equal say. Communication and self-esteem were important for this child, and it was vital that they had to develop. As a family, we did not have to deal with all the issues that other families have to face. The trauma of adjusting, and accepting into the family a child who is born to us, and who is identified by society as disabled, has passed us by. We made a conscious decision to put ourselves forward as possible adoptive parents. We had a mix of skills and abilities within the family, and reasoned that there was more than enough capacity to absorb another member. We felt that as our own children were using the family to grow towards independence and adulthood and a deaf child, up for placement, could do the same.

We did have the massive trauma of having to adjust our way of life in order to absorb another member into the family. It was incredibly difficult, almost to the point of defeat. It was and still is a two-fold adjustment: to Corvette as an additional member, and to Corvette as a deaf child. Our youngest child, Johanna, is hearing, can sign, and is one year younger than Corvette. Watching them take on the world, and each other, is so very sobering. Despite all the fundamental adjustments we as a family have made to accommodate and absorb, Corvette is still making far more adjustments, daily, to cope with hearing society.

Our signing at home is a curious mix. Bedtime stories, information from newspapers, stuff from the TV, all tend to be delivered in BSL, or as near as we can manage. Routine information, instructions and directions tend to be in SSE (both deaf and hearing). Equally, Corvette’s signing seems to follow the same patterns. Mundane, practical details of everyday life are in SSE. Descriptions of hobbies, things learned in school that day, are in BSL.

Several good happenstances have helped us and Corvette. We lived near a school for the deaf. The first big hurdle straddled was the Local Authority agreeing with our wishes that funds had to be made available for Corvette to attend this school. And then the school was soon to decide to implement a programme of bilingualism. So it did not take too much effort to see Corvette in the pilot group.

The concept of bilingualism for deaf education was, and obviously still is, very attractive. We are both teachers of deaf children (one of us is hearing and the other is deaf) and the confusion about all the varied demands being made on deaf children by users of English, and by the educational systems, was very draining. Bilingualism was such an obvious option: the subject matter of all the lessons in the school week was to be delivered in BSL. Communication would cease to be an issue. Learning could go ahead, and hopefully ‘take off’. English would be taught as a second language. It is such a natural and obvious step to take, to split up the double function of English teaching: the development of the language itself, and the simultaneous use of the language to carry information about history, geography, maths, and all the rest of it.

It is good to see the school dealing with sign language, and discussing it in small groups. Corvette will come home and in conversation mention how they had discussed in school ways of tightening up inefficient gesture and replacing it with tight, effective signs. It might not be true, but in general, not many hearing children come home and mention that they were exploring new ways of putting words together. It is really quite sophisticated for nine-year-olds to do that. Corvette does it, and it is very precious, almost a privilege, to share her growing skill, confidence and involvement. It is refreshing to see this dialogue going on. In general, sign language is invigorating. Maybe hearing people are too blasé about English. We don’t recognise innovation and creativity as readily as we should. Maybe we have become staid and predictable. But sign language seems to be more creative and innovative. The visual buzz appears to be easier to recognise.

It may be emotive language but we feel for a child like Corvette, integration would turn her into a victim. Integration can work, but not for all deaf children. It would not work for Corvette. She is developing a sense of herself, and that would be too contorted to be healthy if she were facing the daily comparisons/pace of hearing schools. She would be set up to fail, with the differences being hourly emphasised, with the struggle to keep up being the underlying motivation to the work.

For her own progress, and impact in a hearing society, it would have been good to see a more complete blossoming of her English skills. She will be able to deal with a lot of lip-reading, which is important. Her lip patterns are good. Reading is a skill that she might not completely master. Her English, within an SSE framework, can be often grammatically correct. But it is still a slow progress. But this is not being held up as failure of the bilingual policy in the Primary Department. These are very complicated and interrelated problems, whose strands go far beyond the bounds of school.

For Corvette’s future, the least painful adjustment from childhood to adulthood is all we can ask for. The transition is not particularly easy for any teenager. It can be hard for a deaf teenager. And it is particularly hard for someone who has not had that security in the formative years. We want our child to be able to deal with the world on equal terms. We want our child not to be dependent. We don’t want our child to work out her anxieties and problems on the back of statutory agencies. We want our child to find a job that she will like, and we want her to have had enough exposure to good parenting skills so that when she herself has her own child, she will automatically have an instinctive sense of good parenting skills. We want our child to deal with society so that she does not succumb to the pressure of our commercial world gullibly, and the pressure that ranges from peer group to whatever. We want our child to have a working knowledge about the issues around deafness and about being deaf in a hearing society. Hopefully, she will not become de-motivated and go off the rails, but if she does, we hope we can deal with it, and we hope she comes back onto the rails before any damage is done.

Corvette stands a fighting chance of organising her life. She will have integrity, self-respect and the internal resources to deal with things. Obviously she will make some mistakes, but she is on the way to growing up, and we are confident that she is going to make it.

Endnote

Corvette now lives with her partner and two sons in the Midlands. She graduated from Nottingham Trent University with a BA Hons, 2.1, in Textile design. She is now Managing Director at Kingswell Support Service Ltd, and she also rents a unit selling antiques at Matlock Antique shop.

Sadly, Steve died in 1995.

First published in Deafness Issue 3 Volume 10 1994

Sheila is now employed by the Robert Gordon University in Aberdeen as a Lecturer in Social Work. She maintains a keen interest in Deaf Issues. This research formed part of her course work for the Open University Course D601 Social Work with deaf people.

Introduction

Luterman and Ross (1991) have emphasised the importance of sibling relationship, whilst recognising that their study is a much neglected area. They say:

Siblings are enormously important for the development of social skills. Within the sibling system, children learn how to resolve conflicts and how to be supportive of one another. They learn how to deal with authority in their relationships with their parents. The sibling system teaches them how to make friends and allies, how to save face while losing, and how to achieve recognition for their skills. In the sibling world, children learn how to negotiate, cooperate and compete. The “jockeying for position” within the family system shapes and moulds children into their adult selves. When children come into contact with the world outside the family, they take with them the knowledge they gained from their siblings to form their peer relationships.” (p.48)

Recently, while visiting the parents of a deaf child, the parents remarked that their deaf daughter was very close to her younger brother who often looked after and felt responsible for his deaf sister. Another family I visited had severe behavioural problems with their fifteen year old daughter. She showed resentment towards her younger deaf brother whom she felt was more loved by her parents because he was deaf. This seems to support Luterman and Ross’ (1991) research into the feelings experienced by hearing siblings about family relationships when there is a deaf sibling. Lorraine Fletcher (1991) illuminates this further from a parent’s perspective:

“Play sessions with Ben were a priority; play sessions with Sarah are fitted around them. Each of Ben’s demands is an opportunity to ‘work on’ him. Sarah’s are all too often met with delay tactics. Despite resolutions to the contrary she is given second place far more than I would have wished. I am hypersensitive about this, doubly aware of injustice, imbalance in my treatment of my two children.”

From a personal point of view the sibling relationship has intrigued me as my mother is a hearing sibling. As a late baby, my deaf aunt was very much attended to by her parents, aunts, family and friends. Sign communication was discouraged at home and the use of speech encouraged. Due to my aunt’s frustrations and resulting behavioural problems and tantrums, she was regularly appeased with pairs of shoes. At a time when money was tight my mother perhaps resented this.

There are a number of questions raised by the above situation:

• Is it usual for parents to face this dilemma of injustice, imbalance in the treatment of their deaf and hearing children? If so – how do the respective siblings feel? Do they resent this? >li>Have communication and attitudes changed since they were youngsters, and if so, how?
• Do hearing siblings feel a sense of responsibility for their deaf brother/sister?
• Has the sibling relationship progressed into an adult one or does the deaf sibling continue to be treated in a childlike fashion, protected from anything considered to be harmful or irrelevant?

For example, my mother and other family members, as I have said, were discouraged from using sign language with my deaf aunt when they were young. But recently one member of my family has enjoyed a change of attitude and enrolled in a local sign language class. I am aware that my involvement in the deaf world, and subsequently my beliefs about effective communication, influenced changes in my family, but is this a fairly typical scenario or an exception? What happens if no-one in the family becomes involved in deaf issues?

Method

Initially I imagined that I would simply approach siblings with a questionnaire which they would complete and return, but soon realised that making contact would be a problem as I had little knowledge of any extended family members other than young clients currently experiencing difficulties within their families. I chose not to use this client group as I felt this issue would be too raw and that any interview would become a lengthy counselling session with little or no opportunity for effective follow up. I also did not want to involve parents at this point as it may have raised many other issues for them which, although important, were not included in the aims of the study. I therefore targeted the deaf adult age group as I felt this group may be in a better situation to understand the aims of the research, be more able to be objective about the issues and be more rational in handling them. I subsequently developed two questionnaires, one targeted at the deaf adult and one at his/her hearing sibling. Prior to interviewing the deaf adult I asked if they could pass on a questionnaire to their sibling.

Fifteen questionnaires were distributed to hearing siblings, from whom I received ten replies and twelve questionnaires to deaf siblings, from whom I received eight replies. The questionnaires were anonymous and, as a result, I was unable to follow up non-returns. The Deaf questionnaire was divided into four sections entitled Information/Factual (which included questions about gender, family composition and other personal details), Growing Up, Present Time and Additional Comments; the aim of these sections being to focus respondents on a particular time in their lives.

The Results

All the deaf siblings were interviewed by me, with most preferring me to complete the questionnaire in line with their signed responses to my questions. I had no personal contact with the hearing siblings, who returned their written responses to the questionnaire by post. I will look at some of these responses in detail later in this article.

The first section of the questionnaire focused on “Growing Up”, with a particular emphasis on how deaf and hearing siblings communicated with each other and what the characteristics of their relationships were (Tables 1 and 2)

TABLES 1 and 2. RELATIONSHIPS BETWEEN THE SIBLINGS IN THE PAST

The following numbers of the deaf respondents reported that they were …

For the hearing respondents, the questions were worded differently. They reported the following:

There was a certain amount of resentment among the deaf siblings to the question about being spoilt because they were deaf. I feel that, though it was not intended, a negative view of being deaf was uppermost here and therefore the automatic, spontaneous response was “No”. This perhaps supports Oliver’s view that a negative, disabling stance is equivalent to “reinforcing onto the isolated, individual people the idea that the problems they experience in everyday life are a direct result of their own limitations.”

The question about being made to feel special received the same response, but left more room to comment. One deaf respondent said that “they tried to include me in the family but never understood – too much talking.”

Is this how hearing siblings saw their relationships? It was in this area that the questionnaire elicited some of the most illuminating and poignant responses, three of which are now reported in full.

CASE STUDY 1

“My brother and sister were very different in that my sister was brought up at a time when oral education was thought to be the best, whilst my brother, being 4 years younger, had the benefit of better equipment and of being in a very good unit in a mainstream school. This did make a difference when we were children – communication with my brother was easier, but then we were closer in age anyway and had more in common. There is not this difference now.

As a child I never really thought about my siblings as ‘deaf’. They were just my brother and sister. I know my parents always tried to treat us equally so I would not feel left out because of the extra attention needed. However, over the past couple of years, I have been aware of feeling responsible for them and they tell me off for doing this! I think perhaps I have always done this and seem to be regarded as someone who is reliable – something I occasionally feel trapped by.

I did sometimes have the feeling they were more ‘special’ than me but I don’t know if this was related to the deafness so much as to the fact that they both shone in their particular fields of interest and received a lot of attention from outside the circle of family and friends. This meant when I was living at home with the family I seemed to be perceived only as someone’s sister instead of a person with my own identity.

I think the three of us are maybe closer now than we were as children, certainly where my sister is concerned. I wouldn’t say I ever feel sorry for them but sometimes I do feel angry for them because so many people cannot see beyond the deafness.”

CASE STUDY 2

“I was the third of eight children in our family, who were about two years apart in age. Only the youngest is deaf, and he has been all his life. He is ten years younger than me.

I left home at age 15 for a career in the forces so contact with my deaf brother has been just occasionally but fairly regular. My means of communicating with him has, however, suffered from a lack of practice. Being virtually unqualified he has been unemployed nearly all of his adult life. I have always felt deep concern for him and in particular for what the future holds for him. On a happier note, we both look forward to and thoroughly enjoy an occasional day’s fishing together.”

CASE STUDY 3

“My sister left school when I was two years old (I was very much an afterthought) and I was often told by my parents that on her return from (residential) school, my sister enjoyed nothing more than playing with me. They added that, from a very early age, I seemed to understand that in order to communicate with my sister, I needed to look directly at her and also learnt early on to enunciate words clearly. (At that time, her sole method of communication was speech/lip-reading – the method we still use within the family). She only developed fluency in sign language some ten years after she left school, when she joined the deaf club in the neighbouring town where the majority of members, having been educated in different schools, used BSL. Because my sister spoke (speaks) well and could act as an interpreter between her family and her deaf friends, there was never sufficient impetus or pressure on her family to become fluent in BSL. I much regret this – to have any second language at one’s finger tips (in this instance, quite literally) is a great asset.”

Deaf – hearing sibling relationships in the present – and a look to the future

These accounts also refer to the present status of sibling relationships. It seemed important to establish whether any of the elements of these relationships had changed, and this was the intention of the questions asked in Section 3 of the questionnaire which focused on the ‘here and now’ of sibling relationships. Table 3 is a summary of the responses obtained.

TABLE 3. COMMUNICATION BETWEEN SIBLINGS IN THE PRESENT

Seventy-five per cent of those deaf adults interviewed do not at the present time enjoy a full communicative relationship with their siblings – most still communicate using the family baby signs and mime used when they were growing up. For example, at one school for deaf children, Paget Gorman is used and classes are held to teach parents this system. When the deaf child is 11 or 12 years of age, they informally switch to using BSL which is considered to be “grown up sign”. However, unless self-motivated there are no classes within school at which parents/family can learn BSL and so a gap can develop, with the family continuing to use the Paget Gorman system, now perhaps with a “baby stigma” attached to it by the deaf youth/adult. As a social worker, I am aware that this adds increasingly to the stress of the adult/family relationship, and this may be an element of what we are seeing here. Again the subjective written responses throw further light on these figures. One deaf respondent who reported that they saw their hearing sibling ‘often’ wrote that ‘my sister comes to visit my mother who lives with me’, suggesting that although they see each other ‘often’ there is not much value in the visit. Others wrote ‘I see my brother, live together”, which conveys a similar feeling, and “no communication – so grew apart from brothers and sisters – never see now”, which again suggests that communication difficulties contribute to the quantity of social contacts. Where an improvement in communication was reported by deaf siblings, there is an indication that this was due to a shift in the approach to communication used – prompted, in one case, by changing patterns of responsibility:

• “Brother learned sign”
• “more signing, gestures, finger-spelling and visual aids”
• “visual aids make all the difference in communication and understanding”
• “now brother must sign – parents died and we live near together, but still not sign much, most talk”

For some deaf siblings, inclusion in full conversation seems to depend on someone being prepared to act as interpreter: “My sister interpret for me, if sister not there left out”. However, as this particular interview progressed it became apparent that interpreting by the sister was not spontaneous. The sister would wait until the discussion was finished and then “fill in” the deaf sibling on what had been said. This finding certainly reinforces my own personal experiences as my deaf aunt, although increasingly assertive, is regularly left and ignored, because frankly, the family seem oblivious to their communication needs, despite being able to understand deaf people and show sensitivity in other respects as the above case studies show. This is particularly clearly expressed in Case Study 1, where anger is expressed at the disabling attitudes of society – there is a sense, perhaps, of the dependency relationships created by this society impeding sibling relationships. This may be implicit in the discrepancy between the responses of deaf and hearing siblings related to the issue of responsibility. 60% of hearing siblings felt that they did feel a sense of responsibility for their deaf siblings now, as opposed to 37.5% of the deaf siblings who acknowledged that this was the case. This question elicited some of the saddest responses from the hearing siblings:

“Being virtually unqualified he has been unemployed throughout nearly all of his adult life. I have always felt a deep concern for him and in particular for what the future holds for him.”

“Over the past couple of years I have been aware of feeling responsible for them and they always tell me off for doing this! I think perhaps I have always done this and seem to be regarded as someone who is reliable – something I occasionally feel trapped by.”

I feel these two quotes may highlight a common feeling amongst those hearing siblings who have carried a perhaps instinctive, protective role from childhood to adulthood.

There remains a clear division between the deaf and the hearing siblings on the quality of communication. I feel that the deaf response must be more representative of the true situation. Very often, hearing people with whom I have contact think that because they sometimes acknowledge the deaf person by attempting to speak loudly or more slowly, they have included them in the conversation. The deaf person on the other hand, adopts “the nodding syndrome”, perhaps because they do not want to appear stupid. Certainly, in my own family I have observed this behaviour and my deaf aunt asks me “What did he/she say?” after the event. The effect of the neglect of communication needs on the already isolated position of the deaf siblings within the family must have an effect on their self-esteem and confidence. This, however, must be balanced against the lack of opportunity to learn how to communicate fully on the part of the hearing siblings, despite an awareness of changing attitudes towards deaf identity as a result of the higher profile of more positive images of deaf people. For example, one hearing sibling said that they found “watching new young deaf persons” helpful.

References

Charles, A. & Coombs, R. (1991) Growing up in Care. In George Taylor & Juliet Bishop (Eds.) Being deaf – The Experience of deafness. London: Pinter Publishers, in association with The Open University.

Fletcher, L. (1991) Deafness – The Treatment. In George Taylor & Juliet Bishop (Eds.) op.cit.

Luterman, D.M. & Ross, M. (1991) When Your Child is deaf – A Guide for Parents. Parkton, Maryland: York Press

Family life and communication Susan Gregory When their children were of preschool age, the majority of parents (76%) had described their main problem with their child to be communication and even more (89%) saw that to be the main difficulty from their child’s point of view. Eighteen years later just over half the parents in the study still claimed to be concerned about their son’s or daughter’s communication skills; over half of these ‘extremely’ so.

Aspects of the process of communication affected the dynamics of family life. In this chapter we look at these issues in more detail and ask whether this is inevitable for hearing families with deaf offspring. For the most part the families had worked hard to achieve a good relationship; they had followed advice they had been given. They had often reflected upon their situation and had been conscious of communication to a far greater extent than occurs in families where all the members are hearing. For hearing parents of hearing children, shared communication is simply a means to an end. Untaught and incidentally, language develops so that the means of communication can be taken for granted. For many of the deaf young people and their families, the development of communication itself was an issue.

Communication within the Family

An area of major concern for both the deaf young people and their parents was the dynamics of communication when there were larger groups of people involved. The major issues seemed to arise when the family came together as a group.

When I talk to Mum it’s all right, but if the family or someone interrupts, my mother does not finish what we are talking about. I say to her that I was talking to you first but when I try to talk to Mum or get in on the conversation, they tell me to wait.

Marion, 19 years, BSL

Many young people, as the above quote indicates, felt hurt at the way they could be excluded in such settings.

If I can’t follow I get angry, I say ‘I’m here’. At Christmas I get bored, I ask them what they’ve said. It’s the same now; nothing has changed. I keep telling them, but they can’t think about me all the time.

Interviewer: Could your family improve their communication with you? Yes. They could try and include me more and not pretend that I am part of the furniture. They should offer to tell me what they are saying.

Tina, 18 years, oral

I can’t follow the talk. I feel a bit angry and frustrated. If I ask them what they are talking about they say ‘wait a bit’, and then they don’t tell me what they are talking about.

Marion, 19 years, BSL

In many families, conscious attempts were made to fully involve the deaf person.

Even in family gatherings now I find myself interrupting people and saying to Carol ‘Did you hear what Aunty Vi said?’ and if she says ‘No’ then I go over it again and make them wait until I have let Carol know, so they realize they must include her as well. After all these years we are still doing it.

Mother of Carol, 23 years, oral

The effort made by this family led the father to reflect whatsit must be like for his daughter.

Father: I think that in all fairness to Carol, you don’t just appreciate her difficulties. This is the sobering thing, that we have had a deaf daughter for about 23 years and I don’t really think that possibly we have the basic understanding of what she feels like.

Mother: I don’t see how you can tell, because unless you have been deaf yourself you have got no clue.

Father: I think it’s so sad, because we tend to look at everything from our own standpoint; the effort that she has got to make just to remain in a conversation and pick things up that we take for granted

Parents of Carol, 23 years, oral

But, however much the family was sensitive to the needs of the deaf person, it was not ideal, for no one likes to disrupt the whole conversation. As Phillip said when describing how his family always explained any jokes to him that had been made at the table.

I want to laugh at the same time as others.

Phillip, 19 years, SSE

And sometimes, attempts by family members to involve the young deaf person were seen as patronizing.

I can’t remember any times (good times with the family) because a family party is not ideal for me. I never talk, I just listen. People say ‘Hello’, ‘How are you?’ or ‘Sunday dinner – OK?’ that’s all.

Nigel, 19 years, oral

It raises the issue as to whether such communication difficulties are inevitable. An interesting comment on this is raised by the following two excerpts from an interview with Paula, who contrasted the frustration of conversation with her parents with the ease of communication with her friends.

I get frustrated. If I try and interrupt they say, ‘Wait a minute’. I sometimes shout at my Mum and Dad because they do not understand how I feel.

And later in the same interview:

Lots of friends (deaf) stay here now and we chat all the time. Now my mother and father feel left out so they know how I felt.

Paula, 24 years, BSL

These quotes make an important point. This deaf young woman had lively and interesting conversations with her friends, yet when she was together with her family she often felt left out. Yet this was a family with a genuine concern for their daughter and where relationships between family members were strong and supportive. Clearly, her deafness of itself was not a barrier to lively and simulating conversation, as evidenced by her easy communication with her deaf friends.

You can’t catch the moment

Yet, although for many of the young people and their parents, one-to-one conversations were fine, for some they were just not adequate, and it was not possible to talk over those things that they felt it was important to discuss.

He misunderstands a lot. He thinks I am talking down to him a lot. He says ‘you make me feel small’ and it is a complete misunderstanding. I am not doing that at all and I don’t understand what he means when he says that to me. Talking things out, he finds he has not got the patience to sit and talk problems out. He gets upset unnecessarily; if he would stop and talk.

Mother of Colin, 24 years, BSL

I think the worst time is when he is upset, and he has to explain himself, what he feels inside. When Pamela died, he did cry, but he couldn’t explain his feelings. It was difficult to get through to him.

Mother of Bobby, 20 years, SSE

There were other difficulties. For many parents, sadness lay in their own appreciation of what the deaf young person was missing in terms of incidental conversation, asides, overhead conversations and ‘chats’.

You can’t carry on a normal conversation. It’s giving that instant comment, you can’t catch the moment. By the time you have got his attention the situation might have passed. He doesn’t say he misses anything, but he wouldn’t know if he missed anything.

Mother of Ray, 21 years, oral

The issue could arise over not understanding the nuances in conversation as even when communication was well established some of the subtleties could be lost.

He can’t understand the tone in a voice. He never has been able to understand sarcasm. He doesn’t hear that change in the tone of voice, and he doesn’t know what it means. He only hears the sentence; it’s like talking on a level all the time. Your voice does not go up and down; it’s unfair to speak to him in any other way than straight meaning.

Father of Alistair, 21 years, oral

She doesn’t know the meaning of a joke; if you say something, it’s serious. She can’t see double meaning. She’ll laugh at Laurel and Hardy, it’s visual; but as far as language goes, she doesn’t understand, you can’t play around with it.

Mother of Marion, 19 years, BSL

They said they thought I knew already

A more insidious consequence of the difficulties in group discussion and the limits on informal conversation, however, seemed to be that many deaf young people often found that they had not been made aware of significant family events, often not until well after the event. As far as it is possible to ascertain, this rarely seemed to be due to deliberate concealment, but just that they had missed out on the information. Assumptions hearing people make as to how information is transmitted may break down where there are deaf family members.

When my cousin was expecting a baby I was the last to know about it. It was not until she was a month due. It was all at the last minute before I knew.

Interviewer: What do you feel about that?

I feel mad sometimes. I feel, ‘Why didn’t you tell me?’ – you know. I felt annoyed sometimes.

Interviewer: Did you ask your family why they didn’t tell you?

Well, my Mum, she’s the one that knows everything, you know. So, she’s the one that tells everybody what is happening and this and that. I asked her why and she said, ‘I thought I’d told you’.

Interviewer: Did you accept that explanation?

No. Interviewer: Why do you think she hadn’t told you?

I don’t know really. I just think she should have told me.

Trevor, 22 years, oral

When my father left, my mother never told me where he had gone and why.

Ann, 21 years, BSL

I had a cousin in hospital. They didn’t tell me. My grandmother told me and I was angry. They said they thought I knew already.

Tina, 18 years, oral

When my grandfather died my mother never told me and I found out a lot later.

Mother of Andrew, 21 years, BSL

When young people were asked whether there were important family matters that had not been communicated to them, of the 49 who answered that question, 39 (80% of those who responding, and 64% of the total sample) said this had happened to them, although 15 of these did say that although it had happened they were not concerned about it. It is of course likely that this occurred to the majority of those who could not answer the question also.

From Gregory, Bishop, J. and Sheldon, L. (1995) Deaf young people and their families. Cambridge, Cambridge University Press.