Personal experiences – the social and emotional development of deaf children
A feature of this website is the inclusion of personal accounts of the topic under consideration. This makes it possible to include different perspectives, including accounts from professionals and consumers, and different views on decisions that have been made.
We welcome these contributions at any time, and guidance for contributors is given in the ‘overview of the project‘ section.
We are also happy to include here links to signed contributions.
Click on the link to go directly to the relevant contribution.
- Janet’s diary – Janet Goodwill After a number of different jobs, Janet obtained a post at Rampton Hospital
- Making plans for Nigel Paddy Ladd – author and researcher of deaf issues. Until recently he was coordinator of the MSc, Centre for Deaf Studies, University of Bristol.
- Cause for concern Susan Gregory – coordinator of this website and author of ‘Deaf young people and their families’
- 10 years working in NDCAMHS Constanza Moreno – a deaf clinical psychologist working in the London outpatient team of NDCAMHS. This article first appeared in the BATOD Magazine, September 2016.
In the first two accounts a deaf man and a deaf woman provide accounts of their personal experience of growing up in the 1960s. In account 1, Janet Goodwill describes her life, her relationship with her siblings and family, growing up, and marriage and children. She writes about the times she felt depressed despite the support she had, and her finally accepting a job that suited her and which she felt she would enjoy. In account 2, Paddy, writing as Nigel, describes his frustrations and loneliness at school, the possibilities offered by college although he did not feel he could be fully part them.
Both these accounts have been previously published in ‘Being deaf’ (ed) George Taylor and Juliet Bishop, Published by Pinter Publishers, London.
In the third account, Susan Gregory describes a group of young deaf people who found their lives distressing and in some instances not worth living. While they are not typical of deaf young people, the reasons for them feeling the way they did is worth considering.
All three of these accounts describe very vividly the stresses and frustrations that can be, and have been, felt by deaf children and young people. It is of course not the full picture; other accounts may paint a more positive picture but in the context of ‘social and emotional development’ it is also important to reflect upon these views.
In account four, Constanza Moreno reflects on her personal experience of the positive steps that have been taken to address mental health issues in deaf children and young people since 2000.
There are also personal accounts on this website which are relevant to this topic, see for example:
- Spoken Language and deaf pupils: 4. Mandy
- Sign language and the education of deaf pupils: 5. A language for Ben
- Deaf children, the family and education: 6. A toy merry-go-round
- Cochlear implants: 6 Living life to the full
In the following extracts from her diary, written retrospectively, Janet vividly recalls events from her childhood, adolescence, early adulthood and recent past. Her attempts to make sense of what often seemed a confusing world are movingly described. Her eventual success is finding fulfilling employment concludes the piece.
My mother came from Dewsbury and my father came from Saxonby, Lincolnshire. I was born near Dewsbury. I am one of twelve children. I have six brothers and five sisters; there were also twins who died at birth. I am the youngest. I was born deaf and so was my sister, Ann, but she didn’t become deaf till she was seven. She was sent to Doncaster School for the Deaf. My mother and father were concerned about my hearing. They knew that there was something wrong with me because I wasn’t speaking – just screaming, angry and going very wild. My mother couldn’t cope with me at all. My parents went to the doctors who suggested I should go to Leeds School for the Deaf. My father refused to allow me to go to Leeds. My sister Ann was at Doncaster School. So why should I go to Leeds? The doctor finally agreed for me to go to Doncaster.
Going to School
The day I started school I was three and a half years old. I did not know what was going on for I could not speak. My family started to cry, especially my adored sister Renee who had looked after me when my mother couldn’t cope. My mother, my sister Ann, and I went to Wakefield railway station to catch a train to Doncaster. We all got to Doncaster. We went through very big, double, iron gates and all along the massive path, it was a huge boarding school and on the notice board right at the front it said ‘Residential School for the Deaf’. We went through a double, heavy, brown, wooden door and the headmaster was waiting for us. His name was Dr Eric Greenaway. He was a very tall, big man with a moustache and balding white hair. His hands were in his pocket.
We were shown to the nursery school. Ann had already gone to the secondary department, so it was only me and my mother. There was this very tall lady with round glasses and fair wavy hair, with a smile on her face. She said ‘hello’ to me and showed me the two wooden rocking horses. I had a ride on one not realising my mother had gone and never even said ‘bye-bye’. When I got off the rocking horse and began to look for my mother I started to scream and cry for I knew something was wrong. I wouldn’t eat or drink. We children went to the bedrooms. There were about six bedrooms with six beds and six little cupboards. We had a few helpers from the secondary department. One of the girls helped me to get undressed but I kept putting the clothes back on. I refused to let her undress me. I was getting frustrated. Finally, they brought my sister Ann over. I was so pleased to see her. I let her do everything for me. She washed me in the bath and put me to bed. It was 6.30pm and Ann had to leave me and go back but I was unsettled. I got up and screamed, refusing to go to sleep. Ann was brought back again and had to lie with me until I went to sleep. This went on for a fortnight. In the last two weeks of term Ann was very worried because she was going on a school holiday for one week to the Isle of Man. When Ann did not turn up for me, I was a bit unsettled. I went to bed and slept but started to wet the bed which I never did before I came to school. I had been dry. Ann was relieved when she came back from her holiday to see that I was all right. It was three months before I saw my mother. I had my own home clothes on when Ann and my mother called for me. I didn’t smile at my mother, it was as if I didn’t know her. We went on the train and went to my home. I saw Renee my sister; I went and hugged her but I never looked at my mother. I hated her for what she did to me; leaving me at school like that. It felt as if she had dumped me. All I wanted was Renee. Renee and Walter, her boyfriend, went everywhere with me. They really spoiled me very badly.
When I was four I was a bridesmaid for my sister Renee and her fiancé Walter. That day I felt that there was something wrong and I was very sulky. I kept going to Renee all the time and I wouldn’t let go of her. Renee had to leave home to live in her new home with Walter and I wasn’t very happy. Renee was very worried about me. I went to stay with her a few times.
When I was seven years old my big brother Brian came to see me at school; he always spoiled me very much. He was in his air-force uniform. I don’t know why he came to see me. He took me out for the full day. He hugged me and bought me a lot of things. I didn’t understand why. It was time for me to go. He was in tears and hugged me and kissed me as if he didn’t want to let go of me. He was gone. That night I went to bed and in the middle of the night I had a very bad nightmare. I dreamed of three black aeroplanes chasing around. This went on for a fortnight. I have that same dream often. I can never forget the dream to this day.
At the age of eight I started to go to junior school. Ann had left school. She was sixteen years old. She had got a job as a typist. I never knew much about Ann at school. I never wanted to go to school. I never made real friends. I was always alone but I never wanted to go home either, as I had no friends at all at home. I still wet the bed. There were four dormitories. I went into the fourth dormitory, for eight year olds and nine year olds. We had forty beds plus two prefects to look after us. I hated it.
We had our own swimming pool. We started to have swimming lessons. My PE teacher had white hair and was very strict and cruel, I would say. We all went out of the building and went to the swimming baths. We all got changed which was very exciting because I loved swimming. I got undressed and was the first to get into the water and went to the bottom of the water but the teacher was looking for me and saw me in the water and made me come out. I was a good swimmer.
One day my mother, sister Ann and I went to the Deaf club in Dewsbury which was a very big building like a hotel. It was the Christmas party for the children. I just sat on the chair very quiet, refusing to speak or play. I would not do anything in front of my mother. We never had a very close relationship. I went to the Deaf club a few times but I was not keen on it. I liked to be on my own.
As I got older I started to feel happier in myself, although I still hated being deaf. I always blamed my mother for everything. I was very difficult and always wanted my own way. My mother could not communicate with me. I always seemed to take it out on my mother. I would break down and say ‘I hate you! Nobody likes me! Why me? Why am I deaf? Why me?’ Everybody would go quiet.
I was difficult with my sister Jillian too. One day, Jillian went out playing with friends; there was a lot of girls playing with a skipping rope in the middle of the road. I was just sitting on the wall watching them. Jillian wouldn’t let me join them. I always showed her up. I just spoiled everything. One day mother told Jillian she had to take me swimming. We all went and had a good time but on the way home we stopped at the sweet shop. Jillian showed me the sweets that I could get with my money but I wanted sweet sugared almonds. Jillian said no I couldn’t because I didn’t have enough money. I wanted them and got very angry. Everybody was looking at me because of the way I wanted my own way. Finally, I did get the sweets but only five in a bag. I was happy but Jillian was angry with me.
When I was ten years old, one Saturday afternoon my father was sitting in his own armchair, in his usual place next to the fireplace; on the right side on the floor there was a brown leather belt, it was always there; on the other side there was a wooden stand with an ashtray for his cigarettes. He was always very comfortable in his chair relaxing on Saturdays ready to watch ‘Saturday Sports’. Wrestling was his favourite and mother’s as well. Of course, I was sitting on my own because I had no friends. Jillian was with her friends. As soon as the sports came on television I switched it over to the other side; it was ballet. I was watching it. Father went to switch it back to sport, I went to switch it to ballet. Father was getting fed up, so I stood in front of the telly so he couldn’t see it; he was furious because I was getting my own way. Father got the belt out; I went out and went upstairs and made a fool of myself. I started to scream, and kept saying, ‘Nobody like me or want me because I am deaf.’ Everybody hated me, nobody talked to me. I was always alone. It was very confusing. I was always bursting into tears.
At the age of fifteen, I started to go to technical college on my own. I went with Mrs Harrison who was my interpreter and had been my school teacher. She as a lovely woman, very friendly and I liked her very much. Her husband was a vicar. He was very handsome; dark black hair and black glasses. I like him very much. I started college on the first morning with Mrs Harrison. I was so embarrassed as I had to wear my school clothes. I wore school uniform; blue and white stripes and grey knitted socks with black shoes. I was scared because the people were hearing and cleverer than me.
It was very difficult for me to make friends with the hearing students. I did commercial work, typing, maths and book-keeping. I was doing English. The teacher (I never knew his name) said ‘Write about the “government”.’ I had never heard of it before. I never knew we had a prime minister. I had no idea how to write. Mrs Harrison wrote everything down for me and all I had to do was copy it and remember because I was doing this for exams. I thought myself stupid; I was very worried but I never told her. I kept everything to myself. I never told anybody about my feelings. I cried so easily and when I cried I blamed my mother for everything she did to me. ‘Why me? Why am I deaf?’. At fifteen years old I was studying English for eight year olds. We were learning ‘Jane is behind Peter, Peter is in front of Jane.’ I was fed up with it. I liked the book-keeping but the Maths was too difficult for me and I couldn’t follow it at all. I was only doing x, +, ? and -, but it was so difficult. I loved typing as it was easy to follow. I was there for one year.
At the age of sixteen I left school. I was so pleased that I had left. I never made a real friend at school. My only friend Susan had left early because she started art school. I never wanted to go back to school because I hated it.
Mother and I went to the Job Centre. First I went to Readicut to do typing. I did a test but failed. I didn’t know why. We went for another job. It was a very big house with a small office inside. Maureen Divine had ginger hair, curly, quite pretty, freckles and was always smoking. She showed me what I should do. Anyway, I got the job. The business was Peter Divine Plant Hire. The first day of my job I was wearing a black tight skirt, white jumper and black high heeled shoes. I really did look nice. Maureen was waiting for me at the door. She showed me what to do. I sorted all the papers out. That was all I did on the first day. I was learning every day. I learned to do the wages and filled the time sheets.
It wasn’t a very big job. I was on my own all the time. I didn’t do any typing at all. Maureen sent me to do shopping. I thought to myself that this is not what I wanted to do. I was alone again and I’d made no friends at all. I started to get upset and started to cry. I took it out on my mother. I hated everything. Why am I deaf? Nobody likes me because I am deaf. I just go on hating myself.
I started night school to learn shorthand typing. On the first night I was very excited but nervous. I can remember the teacher, but I didn’t know his name. He was short, had a big belly, was balding and wore glasses. I tried to catch his words but he kept turning round to the blackboard. I didn’t write a thing in my book. I thought ‘this is stupid’. When I went home my mother said ‘Did you manage?’ I said ‘OK’ but I never told her anything. I kept everything to myself. I tried again for a few weeks but eventually I gave up. I couldn’t do it. I carried on working. I was getting fed up with myself. I stayed in most of the time, just baby-sitting for my sister Ann. I started to smoke. Maureen taught me how to smoke. All I did was smoke, baby-sit and watch too much telly. My feelings got worse and worse. I burst out and told Jillian I didn’t like where I worked and that there was never anything to do; that I was always on my own. I had no real friends. I’d never had any.
Mother and I went for another job at Slazengers in Horbury. We went inside and had an interview with a woman; I have forgotten her name. She was rather old fashioned. She asked me if I would like to work in the office with all the girls. I said no, thinking that it would be the same as I had experienced before. I decided to work on the factory floor. She showed me round and I saw all the girls. They were all hearing. At the end of the day I went home and burst into tears. My mother said ‘What is the matter?’ Nobody likes me. Eric, the foreman, said that I couldn’t go on the machines. He gave me the box of cottons to sort and he made me think that I was so thick. Nobody talked to me. I was still alone. I thought it would be different but it did not work. Maybe because I am deaf people can’t talk to me. I hated everybody. I wished I was dead. Why am I deaf?
Mother and I went to see the boss about what had happened. The boss called Eric in and he explained to the boss. The next day Eric called me into the office and we had a chat; he asked if I was interested in reading books. I said no, that I had never read, as it was too difficult. I never read newspapers. I didn’t understand them. He tried to make me take three books home to read. I refused because I wanted to go on the machines. He agreed for me to go on them and I was so pleased.
After a while there was no work. I was watching everybody and they were too busy talking to one another. I was there all alone with no one to talk to. I just burst into tears in front of everybody. The supervisor asked what was the matter. I replied that nobody was talking to me because I was deaf. It was very frustrating.
One day, I got a letter from my old school friend Susan asking me to go to Doncaster School Sports Day; I agreed to go. I went and met her. I told her all about myself. Susan was all right. She made friends easily. I couldn’t. Susan said ‘Why don’t you live with us?’ I said I would. Susan’s mother said that I could live with them. I told mother but my father disagreed. I was so upset again. I took it out on mother. I was very lonely. Nobody liked me because I was deaf. Why me? I wished I was dead. Father and Susan’s father had a talk and finally they agreed. Susan wanted a deaf friend. I was over the moon and got a job, pressing, where Susan and her mum worked. I left Slazengers and went to live in Doncaster. I settled down.
I went with Susan to Sheffield Deaf club. It was my first visit. There were a lot of nice, deaf people. I had thought deaf people were so thick but they weren’t really. Susan said she liked one of the men there, his name was Peter. She really fancied him. She made me talk to him and introduce them and they started to go out. I was all alone again. Susan and Peter were going to get married. I went back home. All alone again, and hating myself.
I lived with my sister Renee after I returned home from living with Susan. I didn’t want to go home to mother. I could never settle in one place. Renee and Walter and their sons, David and Jonathan, decided to emigrate to Australia and asked me if I would like to go with them. We all went to Leeds for an interview. They could all go to Australia but not me; I couldn’t go because I was deaf. I would never get a job there they said. I was so upset. Why me? I would be better off dead. I cried and cried, hating myself. That night I took a lot of tablets but it made me feel sick. I was poorly over the next few days. I didn’t tell Renee about it. She thought I was depressed. She was very concerned about me. She called in a social worker, who came to see me. I was very lonely. He said that there was a job for me in Harrogate at the Deaf School nursery. I said, ‘No’, because I didn’t want to sleep there; I was thinking I would be shut in and never come out. I was wrong but I refused to go. Renee did her best but couldn’t persuade me. I had to move out of Renee’s house. I went to live with Jillian. I still wouldn’t live with mother. The day Renee, Walter and their two boys left I cried and cried. I should have been with them. A first marriage
I had my twenty-first birthday at the Horse and Jockey pub. I invited a few families and friends from work – no one the same age as me, they were all a lot older. I wore a white dress which was very short. It looked like a smock; it was a beautiful dress. I loved that dress. A man asked me what record I wanted on. I couldn’t think what to ask for. Then he sat next to me and had a chat with me. He asked me for a date the following Friday; I agreed. I waited for the week to pass but I wasn’t all that excited when I saw him. He was quite handsome; he had ginger hair and a lovely smile; his name was Philip. He was my first real love, I would say. He was so kind and gentle. We had been going out together for about four months, when we got married. Our marriage wasn’t a success. I don’t think we had known one another long enough, I now realise. He stayed out at the pub until all hours. I was all on my own. I was so upset that I was on my own and fed up, feeling that he didn’t care about me. I thought, ‘I will have a baby then he will stay in.’ It didn’t work. I had a baby girl, her name was Nicola Jane. She had blond, curly hair, and was very much like me. We only lasted five years. Our marriage was on the rocks. I was getting depressed and tried to kill myself. My life wasn’t worth living. I gave my friend Dave, who lives a few doors away from us, a note and told him ‘I’ll only last today.’ On the note I wrote ‘Please tell Philip to look after Nicola. I can’t cope any more. My life has ended.’ I took a lot of tablets, but I can’t remember what happened to me. All I can remember is that Philip had Nicola. The house went up for sale and I had to live with Jillian, my sister. I was very depressed. I knew nobody cared about me. I tried to improve my life but it did not work.
One night I was sitting and watching the TV and heard somebody knock at the door. I opened it. I did not know who he was, but he was a deaf man. I couldn’t sign properly with him because I hadn’t signed for about five years. I had shut everything off. I asked who he was and he said ‘John Goodwill’. I remembered his name from school but I didn’t know him. We were two years apart in age but I couldn’t remember him. He told me all his friends’ names. I knew them all but not him. I let him in. We had a talk. My life changed that night and he began to come and see me every week. John and I went out for one year. I went to live in Scunthorpe and I thought my life was improving. John had been married before to a hearing woman but it did not work out for him. He had no children. We bought a house in Scunthorpe and we got married a year after. Then I had a baby boy. He name was Timothy John. I cried a lot; I felt guilty because I had left my first child with Philip. It was very painful. It was a horrible feeling. I could never really tell John. I hadn’t wanted more children but John did as he had never had a child. I understood that. A year after Timothy, I got pregnant again; this time it was twins. I could not believe it. I just cried because Timothy was such a terror.
One afternoon I went to the hospital for a check-up. I said ‘Don’t forget I’m deaf.’ The nurse put down in her book that I was deaf and she said she would give me a shout. I said that was no good; shouting was all right for the hard of hearing but I was different; I was deaf from birth. ‘You will have to come to me,’ I said. The nurse said ‘OK’. I sat and waited. There were a lot of women. I’d never seen so many. I was sitting for one and a half hours. I thought I’d make a move. I asked the nurse ‘What about me?’. She said, ‘What?’. They had forgotten that I was deaf. There had been a change of staff. They were sorry. I had been in hospital for two and three-quarter hours. I was getting angry. In the end I lost my temper. They forgot again. I just went home and never bothered to go back. I went to my doctor instead.
The twins were born – Victoria Rose and Rachel Elizabeth. I was so pleased that they were girls as I didn’t want another boy. The next day we had photos taken by the newspaper and a TV crew. I thought ‘What is going on?’ Well, I was famous. I felt so proud. We were on TV and in the national papers. I was so tired that day.
I was in hospital for ten days. I brought Victoria home but left Rachel behind for another week. I finally brought her home. It was hard work. I did not have any help at all. I had a health visitor to see me who said that I should have nursery nurse or home help. I refused to have them. They thought I was stupid. I’d show them I could do it. I remember that it was very hard work and I was on the go all the time. I went thin and lost one stone. When the girls were three months old I had to go to see a specialist to see how they were getting on. I had a social worker with me. The specialist saw the babies, and asked me how I was coping. I said ‘I can look after Timothy so I can look after my girls.’ He was rather worried. I said ‘I am not stupid, I am no different from anybody else, only deaf’. I think he was concerned about me. I was getting angry because he asked me if I could hear and asked all sorts of questions about me. I said ‘Look I have brought the babies for you to check not to talk about me.’ I said ‘I am going home.’ He wasn’t very pleased.
When the twins were one year old the newspaper men came back again to see how we were getting on. We had photos taken again and again. We were in the paper.
We never went on holiday. I couldn’t do it. It was too much for me. It was a lot easier to stay at home.
A new job
Timothy started school at Easter, it should have been September but he went early so I could have a rest and more freedom. The twins started playschool and it was a lot easier for me. I started to have driving lessons and I passed the first time. I was pleased that I took driving lessons; I used to be scared of the road. Then I started my first job as a cleaner at my children’s school. The hours were half-past three to five o’clock. I worked to get some money for petrol for the car. The twins started school in September. I was looking forward to them going. ‘What shall I do?’ I thought. It was no different for me as there was still work for me in the house.
One day I got a letter from the school saying that there was a problem with Victoria’s hearing. I would have to take her to the doctor’s. All I could think of was ‘She is not deaf.’ I just went numb and cried all day. I don’t want her to be like me, having to go away from home and not able to hear the hearing world. John came home from work. I did not tell him about my feelings. I went to work at 3.30pm. The headmistress, came to see me in the nursery block where I worked and told me again that Victoria was having problems with her hearing. I just burst into tears. The headmistress said there was nothing to worry about. I burst into tears because it brought all my memories back of when I was little. I just don’t know why I did it. It just happened. On the Friday I went to the doctor’s. My doctor was a lovely man, very gentle and kind and he explained to me about the hearing chart. She was only a little low. I was still not very happy about it.
Mr Peter Whitehead came to my house. What a surprise. Peter Whitehead was my former teacher from Doncaster School. He came to tell me that Miss Hill, the headmistress, had called him to say that I was very upset about Victoria’s hearing. Well it was true. I don’t know why I did it. I just burst into tears. I knew I was being silly. I knew she wouldn’t be away from me. I knew she would hear better than I did. It was just the word ‘deaf’ I did not like. It bothered me so much. He explained to me that she might have to have grommets to drain the fluid away in her ears but that she would then hear better. I felt much better but I was annoyed with the hearing test woman. She had not explained and I think I ought to have known about it. I got a letter saying that Victoria had to go to hospital. I took her and saw the ENT specialist. He was very nice and very good. He explained to us what the operation was going to be like and what it all looked like. I just nodded a bit; I understood part but not all of what he said. I got the date for Victoria to go to hospital. She was admitted to hospital at 2pm on 21st September 1988. She was very good. The next day she was allowed to go home. The sister gave her an ice lolly. Victoria was allowed to have a week off as she couldn’t go to school. She was not allowed to go swimming. I was disappointed because she was a very good swimmer.
I was very busy with the house but we got nothing done. John and I decided to move house because the upstairs was so small. To tell you the truth I didn’t have any friends round there. I think it was because we were deaf. I never had anybody come to see me. We looked for houses. I got so fed up searching because John didn’t know what house he wanted. He wanted a big house but we couldn’t afford it. I burst into tears; I was very fed up. I told him ‘Right, I want this house!’ He had to accept it. I couldn’t take any more. We moved from Berkeley to Ashby, which was about two miles away. I liked the house, but don’t think John liked it.
A new job opportunity
I changed jobs but got fed up with the new job as the other cleaner was very lazy. I wasn’t very happy about it because I was a good worker; I always have been. One day I got a letter from John Clark, a lay chaplain, from Lincoln. In the letter there was an application form for a job at Rampton Hospital. I didn’t know what Rampton Hospital was. I asked my friend Ken and he said ‘It is a dangerous place.’ I thought to myself ‘No, I won’t bother.’ I thought to myself again ‘I will fill in the form.’ They wanted a sign demonstrator for the deaf patients. I got a reply and waited to hear from them when the interview would be. In the meantime I wrote a letter to ask if I could have a look around and find out what it was really like inside. I got a reply and they agreed that I should look round. When I went I met Rae Than from the education department. We went inside the building and it reminded me of my school. I went to see two deaf patients. It was very interesting. I stayed there nearly all day. When I went back home I told John my husband everything about it. I said ‘I must have this job. This is the job I want. I hope I get it.’ I kept thinking about it all the time.
In the August the children, John and I went to the Lake District for our holiday in our caravan. We had a super two weeks holiday and when we came back I had got a letter saying that I’d got an interview for the job at Rampton and also I got a letter from the organiser of the Deaf club at Rampton, asking me if I would be a volunteer visitor. I agreed. I was to go the next night. I went and found it very interesting. I just wanted to stay there and help them. When I got home I told John that my heart went out to them. I couldn’t help thinking about them.
My interview lasted from 9.30am until 4 o’clock. It was a long day. They had six people for interview. We were shown round all the building. We had our dinner there and the interviews started at 2 o’clock. Mine was quarter past three. I kept saying ‘I must have that job.’ I had a feeling that I would get it. I went straight home after the interview. John asked me how I got on. I said ‘All right, I wasn’t nervous.’ I just waited for the news of whether I’d got the job. I got a letter from the Rampton Hospital. I opened it and read it. I had got the job and I was to start on Monday. I was sure I would get it. I told everybody that I got the job.
We’re only making plans for Nigel
We only want what’s best for him
We’re only making plans for Nigel
Nigel just needs this helping hand
And if young Nigel says he’s happy
He must be happy
He must be happy!
(X.T.C. 1980; Excerpts from a composition produced by the musicians X.T.C.(Virgin Records)).>
In this section, I am going to do two things at once. I will take you through the years of childhood and how it relates to integration, and I will also deal with my feelings about being deaf and about my identity as it changed during that time. Let me cushion myself against the trauma of memory by assuming the third person .
The story starts with Nigel being diagnosed as partial/severely deaf at the age of three. He was born with this hearing loss, but was able to use his vocal cords quite well because he had enough hearing to use. He started to attend the Nuffield clinic in London where he and his parents were told: ‘Your son is not really deaf. He is a normal person who cannot hear very well. If he is to be normal, he must use his hearing aid well, or else you will lose your son to deafness’. He was paraded in front of parents at the clinic: ‘Now Nigel, show the parents how well you speak. Thank you. Now, if you work hard, your children will be able to speak like Nigel.’ (Implied, if your child doesn’t, you are to blame for not working hard enough.) This was grossly deceitful for two reasons. One, that many of the parents had profoundly deaf children, who had little hope of being able to speak like Nigel. And it also was calculated to make Nigel feel better than those other deaf children, so that he would make the springboard into the hearing world, and leave those nasty traces of deafness behind. Thus, little Nigel began life with a carefully instilled pattern of self-deceit. The parallels between this approach and the capitalist Great Lie are remarkable – both say ‘You can make it to the top if you work hard. Anyone can.’ In reality, of course, only those with the resources can do it, apart from a determined few who trample everybody before them. For the majority of people who have neither resources nor killer instinct, there is nothing but the branding mark of failure. The fact that this is not the only approach to life or to deafness is kept well hidden. These points will re-echo throughout our story.
Little children play around each other, rather than with each other. Nigel joins in with this; few problems show up so far. He is taken into a hearing infant school by a head who relishes a challenge.
Communication on a one-to-one basis starts. Nigel tries to cope but is too young to realise that he is missing a lot of what is happening. There is group playing where the action is fairly physical and therefore easier to follow and much game playing, so that if he can learn the rules by watching and copying, he can pass the time happily. In the classroom, which is small and cosy, he gets by by copying the others. Outside school he knows one or two deaf children, but he cannot lip-read them, or they him, so he doesn’t want to see them again. And anyway, he is better than them, isn’t he?
As the age moves upwards, verbal action plays a more and more important role in finding his true status in the school, including that most painful status for all children, whether in or out of favour. He feels very confused, but this is alleviated when he was adopted by the girls out of pity, or if he is good at sport, some of the boys will defend him.
Junior school gets tougher, and the process above intensifies. Unless in an inner city area, the very nature of a junior school protects the deaf child from too much aggression. He has to choose between being loud and trying to dominate the group so that he then knows what the subject is, and finds word-guessing easier, or by being silent all the time and just watching from the outside, as if all that’s happening is like a TV play. His feelings of confusion grow, and he wonders who really understands him. This is brought out clearly when he is ordered to wear a second hearing aid. He protests strongly; the sound quality in his right ear is so bad that it hurts his ears and gives him a headache after five minutes. ‘Keep wearing it, work hard at it and it will help you be more normal’, he is sternly urged. He says nothing, but goes home and drops it in a drawer and refuses to wear it again. This gives him the proof that nobody understands his needs; he withdraws into himself. If they ask him, he says he is ‘very happy, thank you’, because it is polite, and if you want to be normal you must learn to be polite.
Yet at the same time there is pressure from the opposite end. Having a ‘specialist’ teacher makes him feel like a pampered mummy’s boy. And he has to sit at the front of the class where the other ‘goody-goodies’ sit, not at the back with the ‘big’ boys. At home, nice kind people try to get him to join the cubs, or the church choir even. ‘Doesn’t matter if he can’t sing – we just want to help him.’ Aagh! Those places are for softies; he doesn’t want any part of it. Yet, shielded by such care and concern, he is still more of a Walter than a Dennis. Spinning around and around in these contradictions, withdrawal has to be the only viable strategy. Yet still he cannot explain his sulkiness to all around him – he doesn’t even know himself why he snaps at every attempt to ‘help’.
Secondary school results in a tremendous upsurge of pressure. He has to study ten subjects, most of which are new. He tries hard for a little while, but the strain is too much and he spends most of the time avoiding the teachers’ eyes in case they ask him a question, or hiding the fact that he is asleep behind the textbook. After a while the teachers leave him alone, and then he is free to draw in his rough-book. He survives by cunning; his homework is copied or else is simple enough to pick up from textbooks alone. He does poorly in term time, but better in exams; the strain forces him to specialise and he is literally top in a couple of subjects and bottom in others. He understands few of the events that the school involves itself in; it is impossible to hear in meetings, and he develops a terror of drama, gym, science and art, where you have to demonstrate whether you have understood by carrying out practical things. These are even worse when he is paired with another to demonstrate. His hopelessness is so obvious that the cry goes up, ‘Oh, Sir, don’t put me with him!’
The atmosphere in the school itself is a world apart – no longer sheltered by teachers, as at junior school. He has to face interaction which involves strength, pecking order, verbal jousting and intimidation every time he steps outside the classroom. Bluffing is inadequate, and the other children do not understand; he has a hearing aid so he can hear normally, can’t he? So he is faced with two choices – to accept the label of being ‘a bit slow/dim/stupid’, or try and blot it out altogether and retreat into a fantasy world, pretending that everything is fine, and become a two-dimensional individual. There is one form of escape in sport, and into this he flings himself desperately, spending all his time kicking a ball around. This makes life bearable for a few years. When his school has contact with the local deaf school, he feels a tremendous threat. He doesn’t want to be seen like them, because ‘they’ are regarded as stupid by his schoolmates, and so he shrinks from this contact like the plague. After all, he is different from them really, isn’t he? That’s what the doctors and teachers told him, didn’t they?
Meanwhile he misses the crux of just about everything; jokes, quick remarks, frantically flipping his head from one face to another like a Wimbledon umpire, trying to catch the last bit of whoever was talking and trying to piece together what so and so did, what so and so meant.
‘B’s mum said . . . to him after the . . .’
‘Ha, ha, ha, so that’s why . . . did . . .’
He can’t pick up whispers and nudges, and, worse still, he can’t use them. He tries to pick up topics, and drop them into conversation, but they all turn out by definition to be ‘serious’ ones, because these are easier paced. Humorous chat is too fast for him, and so he is seen as over-earnest, and boring.
He begins to build up an image of himself as a stumbling, blundering retard, breaking off his sentence half way through because he is sure no one wants to hear what he wants to say, lumbering around hopelessly on the fringes of things. After a while, the initial goodwill extended to him by his school mates dries up. The truce is over, and battle begins; he becomes one of the butts of all the digs and jokes. And the years creep upwards to the age when everything that is said is vital because it carries under-messages of power, control, wit, put-downs. ‘And what does lickel Nigel really think then? He don’t say much do he? Ah, he’s a poof, that’s it. Ain’t yer, Nigel?’ (What’s that? What’s that again? Homo? Eh?) ‘Afraid to do it with girls; has to make do with his cat, ha, ha.’
All this has its effect on him, and at home he stays in more and more, inventing and playing games alone. As close to the womb as he can get. I must be careful not to paint things too black. They are that black, but when you are growing up you don’t know any different; you are told repeatedly that this is what growing to be a man is all about. You still hate it, but because of this it rules out suicide as an option.
Nigel and his female equivalent Janie (they’ve never met) have a slight problem. They like girls/boys, but they cannot work out what is going on between all the others. The boys mutter in groups about ‘wanking’ and the best way to do it, whatever ‘it’ is. Janie watches the girls giggling to each other about boys and what they try to do (‘What do they try to do, please?’). Nigel feels he is not normal because he can’t impress the girls and make them laugh; it is all too fast for him. They frighten him because they talk too quietly, and you always meet them in places that are dark, or noisy, or both. Janie wants a hearing boyfriend, not one of those deaf boys she has heard about, but she can’t work out what they are saying so she just goes along with them and smiles, and lets them do what they do (‘But not that . . . And what should she do about that because she cannot follow what the other girls say about it’.) Nigel’s label of ‘queer’ haunts him but he can’t talk about it because if he asked anybody, they would laugh at him. Whenever he attempts to join in with conversations, he meets with no response, as if he had never spoken, or ‘Ah shut up, Ladd’, or ‘Ladd, why are you so boring, eh?’ or, worst of all and most common, ‘You what? What you think we’re talking about? ’Ere everybody, old Ladd thinks we’re talking about X, haw haw’.
As he progresses up the school it gets worse. The younger kids catch on and start to taunt him. When he becomes prefect they take no notice of him – the final humiliation. Now in sixth form, even sport is ruled out. Time to go to pubs and dances. Even worse for understanding people. But what does he do? Stay at home all weekend licking his wounds? So he has to have something to do with his hands. He learns to smoke and drink and stand on the fringe. When forced to dance with girls, he has to find excuses to withdraw every other number, which is for smooching, because he can’t pick up the rhythm if it is slow. He has to go to great lengths to avoid getting stuck with a girl at the end, because it means dark places where he is lost, like picture houses. Convinced of his thickness, he can find nothing to talk about except football, and what girls like football? Yet all the time he is running away he desperately wants to stay and get a girlfriend. Torn in two, he consoles himself by getting drunk, but that is even worse, because he can’t lip-read at all now.
His search for an identity becomes more intense. ‘I’m an introvert, that’s it. I can’t follow things. But that’s not because I’m deaf. They told me I wasn’t deaf, just that I can’t hear very well. So if I can’t follow, it must be because I’m thick. That must be true. I can never think of anything to talk about to others except football. So that’s what I am.’ Now he is truly split in half. His rational mind says that he can’t be thick, because he is where he is academically. Whilst his emotional mind sees no other alternative identity.
Oh Ewing, Oh Van Uden, what a marvellous choice you gave us deaf children. To see ourselves as stupid rather than to be able to see ourselves as deaf and accept it, and to work from there. I hope it gave you a sense of realachievement.
The only thing that saved little Nigel was going to college. If he had gone out to work at eighteen who knows what would have happened to him? Utterly unprepared for life, with his range of interests almost nil, and his knowledge of the basic facts of life also minimal, he might have become the proverbial good citizen on the outside, but on the inside he would have been more like a robot, a true dummy. Perhaps robots are what oralists want to product. But this time they did not succeed. College in the late 1960s and early 1970s was the hippy era – a lifebelt. People accepted you for what you were. If you chose your groups carefully, building up a network of friends, you could find the encouragement to develop as a person. With this new-found confidence, Nigel became interested in literally scores of subjects, most of which have continued to the present day. But no matter how good the friends were, they could not understand why he could not follow them when there were more than two people present, or if there was background noise (which was 90 per cent of the time). As at school, the sheer intensity of the pressure of leading a ‘normal’ life had negative physical effects, and there was nowhere to turn for relaxations. TV – lip-reading strain. Talking – ditto. Lectures and seminars – ditto. Music – ditto. Radio – ditto. Sports? The fame is fine, but what do you do when all the lads head for the pavilion afterwards? Be a bore or cissy, and drop out? Or sit there pretending to laugh and smile, trying to drink yourself out of the dull ache of boredom with no place to relax on a Saturday night, when everyone else is relaxing? So ditto. Theatre ditto. Telephone ditto. Politics ditto. Concerts ditto. Sex and romance ditto.
How then do you relax, Nigel? On you own, that’s how, walking and wandering alone. Sitting on your bed, reading and thinking, alone. Sometimes very happy and contented, sometimes lonely and depressed. But alone whatever way. Alone. Is that so bad, Nigel? Not if you want to be that way, and sometimes it is great. But if you wish to be elsewhere, among any of the dittos that other people are gaily undertaking, then, ah then, it hurts. How can you think of it best? You’re not deaf; you’re just a normal person who can’t hear. But if I am normal, then why can’t I act normally with others, or do their things? I know I’m not stupid now, but I still feel like a bull in a china shop when I try to join in. So what am I, then? If I am normal I can do normal things. If I can’t, I can’t be normal. So what am I? God, tell me! I can’t hear very well, but I’m not deaf. That’s just a word. It doesn’t explain anything or solve anything. So it doesn’t mean anything. So it doesn’t help. So I am a loner. That is what I am, and an outsider. Beyond anybody’s reach. Love doesn’t reach that far. Friendship – that’s the only part of me they can understand or want to see. The real me is imprisoned in ice. And no tears on earth can melt it.
In our interviews, over half the young people indicated that they accepted their deafness, and it was an integral part of their lives. However, there was a group that caused us great concern. These were those young people with very low self-esteem. Six particular questions from the schedule seemed to be good indicators of self-esteem and we use them to identify this group.
- Are you a happy or sad person?
- Are you confident or not very confident?
- Do you like yourself?
- Do you ever feel proud of yourself?
- Do you ever feel sorry for yourself?
- Are there any things about yourself that you do not like and wish to change? (We excluded concrete changes such as ‘my hair’ or wishing to be slimmer.)
Negative responses to these were taken to be feeling a sad person, feeling not very confident, not liking oneself, not feeling proud of oneself, feeling sorry for oneself and wanting to change oneself. They had to be definite responses; answers that were qualified in some way or spoke of ‘sometimes’ or ‘it varies’ would be coded differently.
About two-thirds of the sample (42/61, 69%) gave negative responses to at least one question. However, we decided that those giving more than half negative responses i.e. three or more, seemed cause for concern. This was the case for one in nine (11%) of the total sample. We found that to focus on the seven young people who gave negative answers to three or more of the questions was revealing, particularly in considering the factors associated with this.
Their feelings of lack of self-worth were very strong. The most dramatic was a deaf youth who three times in his interview commented that it would be better to be dead than deaf. He also said:
I never like what I am, I feel a bad character. I wish I was not alive. I’ve had a lot of pressure put on me, I’m always on my own, I talk to myself.
I feel angry inside. I want to be perfect like other people.
I feel sad, boring, I have nothing to talk about. () I don’t feel confident. I want to feel better. I want to feel more confident. I want to be a better signer so I can communicate more.
My body, my face and the inside of me, I do not like it.
I don’t like myself and nobody likes me. () I feel sad, I feel nobody, I can’t talk.
I am a sad person most of the time. I often feel hurt but I keep my feelings to myself.
Interestingly, a factor that was common to most of these young people was the report of serious teasing at work or school, and there was evidence of this for six out of the seven.
The reasons that this group should feel so negatively about themselves were complex, and different for different young people. Looking at the basic information, no clear factors emerge. There were five males and two females. They were educated in a range of settings and employed in a range of work situations. Three were oral, three BSL users and one used SSE. Five were severely deaf and two moderately deaf. They were no more likely than the rest of the sample to come from homes where the marriage had broken up or was experiencing difficulties. However, in considering the young people and their families, there did seem to be some common factors, which we speculate on here. In one case, however, we should point out that an additional contributory factor was likely to be significant physical abuse by the father over a number of years.
Five of the young people were among that group that wished they were hearing.
I wish I was born hearing. () Life would be different. I would have a lot of hearing friends, I would have a proper job.
I don’t mind being deaf, but if I was hearing I would have more friends.
Life would be better, I’d be cleverer. It would be easier with people. I’d hear music, get a better education.
The mother of another commented:
He doesn’t want to know about being deaf. I mean, we went through a big phase where he wasn’t deaf in his eyes. All right, he wore his hearing aids, but say ‘You are deaf’ and he got stroppy with you.
Two of the group expressed feelings of not belonging with deaf people, although in both cases it was seen as a loss. Both these two wished they were hearing and both were oral.
Last year I went to a party. All the deaf people could sign. I couldn’t. I felt left out and I cried. I couldn’t understand without voice.
Interviewer: Have you seen deaf people using sign language?
Yes, in Lourdes, France. There were deaf handicapped using sign language. I felt different, I felt more with them than with myself, signing with them. () In the group, I talked to deaf people. It was like being back at school, talking to deaf people, it felt good. I was pleased to be with deaf people, coming away I felt bad about myself.
This rejection of deafness seemed to have its roots, in part, in the family and in particular in an emphasis on normality and a rejection of things to do with deafness. Three of the parents expressed the desirability of normality throughout their interviews using expression such as ‘She was going to marry somebody normal, which we knew as a mixed marriage would not work anyway’; ‘Children that are normal don’t accept the handicapped’; ‘If he’d had his normal hearing he would be. . .’
The young people in these families also emphasised the desirability of normality.
When I was young they wanted me to be like a normal person, speak very well. They did not want me to sign, because my speech would go bad.
People don’t understand odd people. They don’t want deaf people if they aren’t normal. It makes me say I don’t want to be deaf.
I didn’t feel deaf before I was seven – I was normal.
In addition, in some families there seemed to be rejection of deafness itself. One young person commented:
My parents are nice to my brother and sister (hearing). They argue with me. They say they don’t like deaf people.
In other families, there was a rejection of aspects of deaf people’s lives. Five of the families were seen by their sons and daughters to be opposed to the use of sign language, and a further one to have been opposed until very recently. This does not in all cases agree with the parental account of the situation, but was the young person’s perception.
A BSL user said:
My father and mother want me, but not signing. I ask them why they don’t want me to sign; they say they want me to improve my speech, but that’s impossible.
And her mother confirmed this in saying:
We wanted her to talk as far as possible
. In the oral young people, opposition to signing was often to endorse normality.
My parents don’t like signing, they think I should use lip-reading.
The mother here spoke of advice she would give to parents of newly diagnosed deaf children.
The first thing is to make sure you get them to talk as normally as you can. I swear the majority of them can talk. Get their speech as near to normal as possible, it helps you and it helps them.
And another mother of an oral young person said:
They did a lot of sign language which I didn’t agree with. Quite a bit of oral, but I mean obviously fell back on sign language which, to be honest, I don’t know whether this is right or wrong, I have never let him use it () I let him use whatever means he wanted to communicate, but not signing.
In three of the families the young deaf person was discouraged from using subtitles, even though they wanted to.
I told my mother I would like teletext but she said it was too much money.
My father chooses what television programmes we watch. He doesn’t let me watch the subtitled ones if he doesn’t want to watch them. If I try to watch See Hear my father either turns it off or switches channels. I have a TV in my room, but I am not allowed to watch it, because of the cost of the electricity.
If there are any programmes with sign language, my mother switches them off.
In a further case, the family had bought teletext television, but the young person themselves had rejected it.
We have teletext but we don’t use. I don’t feel happy using it. I lip read.
Interviewer: What do you do if you can’t see the face?
I turn it up.
Interviewer: Does this make it hard for you?
His father commented:
I think it is because he won’t have the teletext on and we don’t have the sound up high especially for him, because I think we have got teletext television for him for him and we got that purposely; he just won’t have it.
Interviewer: Why do you think that is?
I think it takes away the being normal. He has got to be normal all the time.
In three of the families the young person was discouraged from going to Deaf Club despite the fact that they wanted to go.
If I had gone to Deaf Club that would have helped me make more friends and be more confident. () My mother and father held me back for three years. Now I am trying to catch up. I asked first if I could go to the Deaf Mission. () I told my cousin I wanted to see deaf people and make friends but my mother and father kept me in prison at home. My cousin helped me; he telephoned my mother and said, ‘Please take . . . to Deaf Club to make friends and meet deaf people’.
I went to Deaf Club with people from my school. Then my Mum said no more Deaf Club so I stopped.
Interviewer: Why did you Mum and Dad stop you going to Deaf Club?
They said it was a long way.
Interviewer: Did you want to carry on going?
I wanted to go to Deaf Club but it’s hard to get there and I get home late. I wanted to go on the bus but there is no bus back so my father said ‘No’. He wouldn’t come and pick me up. I don’t know why.
In addition to this, there was a disappointment in two of the families, where the parents simply felt disappointed in their young people.
I expected better things of him. That sounds bigheaded but yes, I am disappointed.
The teachers years ago used to say, ‘Oh, she has got a good brain.’ Yes, I thought, but she’s encased in a useless body with it.
In two families, the deafness had been a result of rubella and the parents had considered abortion.
I had rubella, I should have had an abortion.
I am a great believer in it (Abortion). Even now sex is casual, every baby should be wanted, so erase it if it is not. I wouldn’t have brought . . . into the world to be like she is. () Don’t bring someone into the world if you know you’ve had German measles, honestly. Thank God you don’t get many deaf kids.
Both the young people were aware of their parent’s feelings.
Mother told me she would have aborted me if she had known about German measles.
Interviewer: What do you feel about that?
Yes I agree about handicapped being aborted.
Interviewer: Deaf as well?
In all of the families we have described except one, at least three of the following five characteristics have been described in the reports of the young people: emphasis on normality or explicit rejection of deafness, rejection of sign language, rejection of Deaf Club, rejection of teletext, a view that abortion is appropriate for cases of deafness. It seems to us that these were significant factors. There is of course a danger here; we could be asserting that such factors cause low self-esteem, when all we can say is that when we look at young people with low self-esteem, these elements are likely to be present.
We have referred to the one young person who does not fit easily here. He was a young man whose family accepted sign language, were very positive in their attitude to him and whose life seemed relatively problem-free. However, he himself had a very low opinion of himself, was constantly feeling that he should do better, and felt unliked and unhappy. We suspect that this young man was probably suffering from some form of depression, not arising in a clear way from his immediate situation.
In CAMHS the understanding of the emotional, mental health and behavioural difficulties that young people present with is called a ‘formulation’. During assessment, the multi-disciplinary team looks at multiple factors including biological, social and psychological issues. We use these to understand each young person’s unique formulation: their current difficulties, historical factors and triggers and hypothesise about what keeps these difficulties going. This in turn informs our intervention or ‘care plan’. In NDCAMHS, we also include social aspects of deafness, language, communication, Deaf culture and the developmental consequences of hearing loss (and the causes of hearing loss) in our formulations. By enriching the formulation, and sharing it with the family and professional network involved with them, we endeavour to increase the effectiveness of our interventions. Although the young people attending NDCAMHS represent those who are experiencing the most severe end of emotional difficulties, there are commonalities with those who have not accessed our services.
Ten years ago, lack of access to mental health services was a recurring theme in our formulations. Research indicates, unsurprisingly, that early intervention is key to preventing problems becoming entrenched and evolving as mental health difficulties later in life (e.g. Kim-Cohen et al, 2003). Then, many referrals took a long time to get assessed, partly because of commissioning difficulties. The services available were: Deaf Children and Family Service (DCFS) based at Springfield University Hospital in London, the national outpatient service in England set up in 1991; and Corner House also based in Springfield University Hospital, the inpatient ward for deaf children that opened in 2000. In December 2005 a pilot study commenced with DCYPFS and two CAMHS based in York and Dudley, which resulted in a bid to create a national mental health service specifically for deaf children with direct funding. In 2010 ‘NDCAMHS’ was launched consisting of Corner House and ten outpatient or ‘outreach’ centres around the country. This increase in centres and staff has no doubt increased access. Certainly, in London alone we have never had such a large or more varied caseload, in terms of communication preferences, school placements, ranges of presentations, and geographical location. Hopefully this also means that young people are getting help earlier than previously may have been the case.
In 2014 Peter Hindley, the previous Child & Adolescent Child Psychiatrist at DCFS wrote in the BATOD magazine about three areas of preventable developmental delay that can contribute to emotional behavioural wellbeing: the carer and deaf infant attachment, encouraging early conversations about thoughts and feelings and deaf peer relationships and deaf identity. These are still valid in many of our formulations but changes in practices over the past 10 years have altered the predominance of some.
Thoughts and feelings
One salient area of change is ‘conversations about thoughts and feelings’. Ten years ago, a large part of individual therapeutic work focused on teaching basic emotional literacy to facilitate readiness for therapy. It is noticeable that while we still carry out this work, it is to a lesser degree. More clients can recognise and label emotions upon referral. Much work is being carried out at schools with curricula and workshops being developed (e.g. NDCS’ ‘Healthy Minds’). We have noticed the difference already but it is clear that not all clients are accessing these schemes. Facilitating access to these curricula and workshops for all deaf young people would be a useful area of focus for ToDs so all are able to understand and express their own feelings, and begin to understand the thoughts and feelings of others also.
The attachment relationship between carer and infant continues to be an important consideration in our formulations. It is well documented that around 90% of deaf children are born to hearing parents. Ten years ago we hypothesised that, for a number of these families, the attachment relationship was disrupted because of late diagnosis of deafness as the carer lacked the awareness that their child was deaf. It was hoped that the Newborn Hearing Screening test, which has its ten year anniversary this year would ameliorate these difficulties. However, while we have seen a dramatic reduction in the number of children with late diagnoses of deafness, we have not noticed a parallel reduction in families presenting with attachment difficulties or disorders.
A disrupted carer-infant attachment relationship impacts upon brain development, which has far reaching implications for the child’s development: turn-taking, language and conversation skills, cognitive, social and emotional to name a few. Those children presenting with high levels of impulsivity and activity, together with difficulties concentrating, may be manifesting the consequences of prolonged attachment difficulties. While we work closely with families and with carers separately, intervention is not straightforward, particularly as the child gets older. The British Association for Adoption and Fostering in 2006 wrote in their position statement “The most effective intervention for attachment disorders is prevention.” This also stands for deaf children. While there has been an understandable focus on early amplification and language input after identification, I would argue there is also a need for greater awareness and early intervention in the carer-child attachment relationship. Potentially, ToDs working with newly diagnosed families could have a role identifying potentially problematic carer-infant dyads early and referring for prompt support.
As the number of deaf pupils placed in mainstream settings rises, we have noticed that identity is becoming an increasingly common issue in referrals. Some clients report that their initial assessment appointment is the first time they have met a deaf adult. Their responses to this are moving: one young person saying that it had ‘changed their life’. For the level of distress this can cause, it is relatively straightforward to address this issue. We work closely with, and refer to, organisations such as Remark!, deaf youth clubs, deaf sports, mentors etc. However, provision and funding to access these services can vary enormously in London alone. I can only imagine the variability across the rest of the country. In my experience, where the young person can access activities with other deaf young people, the positive benefits emerge quickly.
With the launch of NDCAMHS a new role was introduced, the ‘Deaf Family Support Worker’ (DFSW); this has been fundamental in our ability to facilitate effective interventions to address cultural and social aspects of deafness raised in the formulation. Their work includes carrying out individual, school and family communication profiles. These assessments are unique to NDCAMHS, highlighting the importance of communication in our formulations, both as potential contributing factors to difficulties, and as potential protective factors promoting resilience. In addition, DFSWs signpost to organisations, meet families and explain first-hand what it is like to be deaf, and work together with them on communication strategies. DFSWs receive much positive feedback from families and provide a crucial component of change for families.
Another area of growth over the past decade is our increased understanding of developmental pathways in deaf children. Teachers of the Deaf referring children say ‘I know about deaf children … these difficulties feel different, not to do with the deafness’. While other professions unfamiliar with deafness may attribute all difficulties to hearing loss, and therefore miss signs of atypical development or mental health problems, ToDs are well placed to separate out what is deafness and what is ‘over and above’. This is possibly one factor in the increased rates of referral for Autism assessments. Ten years ago these assessments were relatively rare. Now we run a monthly clinic and still struggle to meet the demand. While not all those assessed are diagnosed with Autism Spectrum Disorder, all present with complexities in communication and social interaction, which reflects the wide variation in developmental pathways that our clients present with.
We continue to learn about how being deaf affects development and we have a responsibility to keep up with research in this area and apply this to our clinical work – for example research by the Deaf Cognition and Language centre at University College London. In addition, we are constantly reviewing the evidence base, theory, and therapeutic approaches from research with hearing people and adapting them for our deaf clients. There is little research specifically about the mental health of deaf people. More is needed to build an increasingly robust body of evidence for this client group. The DIADS research developing assessment measures of autism in deaf clients in York is an example of such research. The hope is that with the increase in people working in NDCAMHS more opportunity will be available to build up this research and thus inform our practice further.
I am also aware that we need to keep pace with how communication is changing, such as social media. The rules of social interaction are different online and our deaf clients often miss out on the nuances of what are acceptable norms and lack the knowledge about what behaviours are legal. We all need to keep up to ensure that deaf young people stay safe.
I also believe that we must learn from our clients about what it is like to be young and deaf today, what is important to them and what causes them distress. Ultimately, a formulation is most effective when it is collaborative – created together, meaningful, and shared with the client. We rely on their involvement and feedback to ensure that our work serves them best, not only on an individual basis, but as a client group. In this way, we can strive towards ensuring the work we do remains relevant to the young people we see.
Kim-Cohen, J., Caspi, A., Moffitt, T.E., Harrington, H. L., Milne, B. J. and Poulton, R. (2003) Prior juvenile diagnoses in adults with mental disorder: developmental follow-back of a prospective-longitudinal cohort. Archive of General Psychiatry, 60(7): 709-717