Deaf and Hearing Impaired People
I would like to propose myself as Information Coordinator for Deaf and Hearing Impaired People in England. I am forty-three years old, working-class, white, second-generation Irish, and raised-poor. The easiest way I can outline my qualifications is to tell my story as a deaf person.
I was born deaf in my right ear (or became deaf in it soon after birth). Until I was seven I had no awareness of being any different from anyone else. I assumed that everyone lay one ear on the pillow at night to block out noise in order to sleep. At age seven, a school nurse noticed my deafness (by whispering 'ice cream' very loudly into my right ear and getting no response). My parents were informed, and then it seems all hell broke out-I was referred to the most prestigious children's hospital in England and underwent a series of painful tests, medications, experiments, and unnecessary operations (none of which made the slightest difference, as the nerve of hearing in that ear was already 'dead').
It was unsettling to suddenly get all this attention for something that had never bothered me or limited my life as far as I or my family had been aware. There was a huge emphasis placed on pretending there was no problem but also on making it better (very confusing). My parents seemed to think that if they and my siblings pretended I wasn't deaf, then I wouldn't notice it myself. This led to ridiculous and painful situations. Familiar phrases in my household were: 'There's none so deaf as those who don't want to hear,' or 'Christine never hears the washing up being done, but she can always hear a sweet being unwrapped.' When I asked someone to repeat something I was often told, 'You heard.' That particular phrase completely threw me. I felt sure they must be right, and I would struggle for hours to try to figure out what it was I had 'heard.'
Discovery of my deafness brought about an alienation between myself and my older sisters. Suddenly I was 'different.' I kept disappearing off to hospital and was getting a huge amount of attention from my parents. Relations that hitherto had ignored my existence were sending me sweets and 'get well soon' cards. Parental attention was in short supply in our household, and this led my sisters to resent and reject me when I was at home. I, in my turn, suffered enormously from being separated from them. I was in and out of hospital at a time when it was not considered hygienic to allow children to visit their siblings on the ward. I missed my sisters and brother and longed to be with them where I felt safe. I was uncomfortable with all the adult attention which was coming my way because of something that really had nothing to do with me. As the third of four children, I was not used to having so much direct contact with either of my parents. I felt guilty that they were not spending that time with my sisters who needed them as well.
After about a year or so of hospital treatments, things died down a bit and I continued going to school and doing well academically. My parents were keen for me to pretend that my hearing was not a problem and so would tell me to sit at the front of the class and pay attention. My mother, in particular, had a horror of my being fitted with a hearing aid, as the only ones available at the time were strapped on your chest (an advertisement of deafness). They didn't want me to look like that. They never even considered the possibility of sending me to a deaf school as they were clearly keen to protect me from the oppression of 'obviously' deaf people. To this day, my mother proudly tells people that I have been deaf since I was thirteen years old and 'you would never know unless you knew me.' My grandmother on my father's side had gone deaf in later life, and there were many ribald stories about the confusion and embarrassment her deafness caused. My mother would express exasperation at her 'saving the batteries' on her hearing aid. I therefore had heavy pressure not to draw attention to my condition and not to make it a problem for other people.
A film I remember watching several times with my family around this time was called 'Mandy.' It was about a profoundly deaf girl who was completely rejected by her father because she could not speak. My sisters would laugh at the strange noise she made at the end of the film when she finally managed to say her name and her father finally accepted her because of it. I used to feel strange watching this film which was very sad and which I felt had something vaguely to do with me. I used to feel embarrassed for my family and wonder what was so funny. Equally, I learned to laugh with them at my deafness and the confusion and embarrassment they sometimes felt around me because of it. I was never very comfortable about laughing in this way but figured it was better to laugh with them than to have them laugh at me the way they did at Mandy.
At thirteen, the hearing in my left ear began to deteriorate (a condition completely unrelated to that in my right ear). My schoowork became harder to keep up with. I had relied on lip-reading all my life, but at about that time teachers began to work more with their backs to the class, writing on boards and talking over their shoulders. I missed whole chunks of lessons. I was (and still am) unable to take notes and listen at the same time, as my 'listening' involves so much watching of the speaker. I began to feel stupid and was often nagged at home for my laziness. I didn't realize that the reason I wasn't keeping up had anything to do with my deafness. I had had such rigorous training in believing it wasn't a problem that by then it would never have occurred to me to blame my deafness for anything. Most of the teachers at my secondary school were completely unaware that I had a hearing problem, and those that knew tended to forget. I became unhappy and started playing truant. When I did go into school, I was even further behind, and so a cycle was set up that eventually led to me leaving school early with no qualifications.
At sixteen a consultant doctor told me I would probably be completely deaf by the time I was thirty. As far as I was concerned he might just as well have said: 'You will be dead by the time you are thirty.' I couldn't imagine a life where I would not be able to hear anything. I saw a future that would leave me completely alone, with no friends, no allies, no work outside the home, and no contact with the world. I decided I had better get a move on and do all the things I wanted to do before I was thirty because there would be no life for me after I had gone completely deaf.
I went through my teenage years in a haze of not seeing (I am short-sighted but refused to wear glasses) and not hearing. This may have saved my life at the time, as there were many things around me it was safer not to see or hear. I worked in boring office jobs and read a lot. At twenty I went back to education and started an evening class in 'A' level English. The embarrassment and injustice of being accused by the teacher of not having read the text, when I had merely failed to hear his question, finally convinced me I had to get a hearing aid.
When I told my mother I was going to buy a hearing aid I felt awful. I felt that I had let her down somehow and was giving in to my deafness. In addition, I was angry at the unfairness of my having to pay a huge amount of money for a behind-the-ear aid (at that time they were not available on the National Health Service). A salesman came to my house and fitted it for me. I had no experience with hearing aids and no idea whether or not I was being given the right aid. (It quickly became apparent that the one he sold me was too limited in range for my hearing.) It's hard to describe the terror I felt on having to hear things I had never been aware of before-the sound of the washing machine 'booming' in the kitchen, the roar of traffic bearing down on me, the way boiling kettles sound so loud that they drown out normal human conversation. Wearing a hearing aid is not a cure for deafness-it amplifies everything and distorts sound so that the wearer has tolearn all over again how to 'listen' and how to block out background noise.
My urgency about having children while young came from the consultant's prediction that I would lose all hearing by age thirty. I had two daughters, at age twenty-three and twenty-six. I had not been told that pregnancy would exacerbate the rate of hearing loss in my left ear and was thus terrified in my first pregnancy to find my hearing deteriorating rapidly-I thought the consultant's prediction was coming true even earlier than anticipated. It leveled out between pregnancies but deteriorated again with my second child.
I encountered huge opposition to having my first child (I was a single parent). It seemed everyone was suddenly convinced that I would not be able to cope because I was deaf. All these years my family and friends had been pretending that my deafness wasn't a problem, and now I was shocked to realize that they had never really believed it. Throughout my pregnancy people who had hitherto treated me as a sane, competent, and intelligent human being cliented at me about their anxieties around whether or not I would be able to hear the baby crying and attend to her needs adequately. I internalised most of the pain this caused me and following the birth of the baby had a complete collapse of my self-confidence. I eventually ended up in a psychiatric hospital with a diagnosis of puerperal psychosis. Actually I was just hurt!
Throughout my adult life it has been very important to me to earn a living to support myself and my children. Any threat to my ability to do this will plunge me into the depths of despair, panic, and terror. I began my working life by not telling people about my deafness. I would bluff my way through interviews and pretend I knew what was going on even when I didn't. I am skilled at looking as if I have heard every word, when in fact I haven't followed anything. I once arrived at an important meeting just as my hearing aid battery failed. I didn't want to draw attention to my deafness by having to go out, find a chemist, get a new battery, and come back, so I carried on throughout the meeting pretending I could hear. When anyone looked at me and asked a question I gave a noncommittal answer. My then partner, who was also at the meeting, was completely unaware that I couldn't hear. Afterwards he said he thought I had been using an extremely effective strategy for intimidating the 'other side' by not saying what I thought about anything.
This pretense has cost me a lot in human contact. Sometimes it has kept me too long in situations I should have left. For instance, I stayed far too long in an abusive relationship with a man largely because I was dependent upon him as an interpreter. He was one of the few people in my life who always noticed when I was not able to hear something or when I was not following a conversation. He encouraged my dependency around this, and I started to believe I couldn't leave because no one else would ever be able to 'look after me' in the same way. Fortunately, his other abusive patterns were too difficult for me to live with forever; otherwise I would still be there. It has also been hard for me to change jobs (although I have done so frequently). Sometimes it feels too hard to have to get used to another set of 'voices' and lip patterns, to have to educate people around my deafness, to have to deal with their distress, to have to hear all about their Auntie Mabel or their cousin's friend's son who is also deaf and how they know all about it. I rarely come out as deaf until I have known people for a while. This means some potentially good relationships never get off the ground because I can't hear the other person and s/he doesn't know why we are having such difficulty communicating. I have a horror of being remembered as 'the deaf girl' and being subjected to the stereotyping and oppressive behaviour people exhibit around deaf people. Some of the worst attitudes I've met have been amongst people who work professionally with us. Throughout my life I have not been able to talk withhearing people about my deafness without them clienting at me, and I didn't meet any deaf people until fairly recently (I would probably have run a mile if I had).
Things gradually got a bit better in work terms. I always wanted to a be a teacher and realised that teaching adult literacy was one way I could fulfill my dream. We teach small groups of roughly eight students so it is relatively easy for me to 'hear' everyone in my group. Plus I am in control of the communication and can direct the conversation. It was difficult doing the study I needed to qualify, since much teacher training takes place in large lecture theatres. I couldn't hear questions addressed to the lecturer from behind my back, but if I didn't sit near the front, I couldn't hear the lecturer. Despite this I have achieved an amount of recognition for my academic and vocational work. I have had many interesting jobs and have taught people from beginner readers to post-graduates. I am a skilled organiser and manage adult basic education provision for a local authority.
When my union recently started up a Disabled Members Network, I suddenly noticed that the reason I had never become active in my union before (although I've had a lifelong commitment to the trade union movement) was because they had never fought for me before. Suddenly I noticed how lonely and hard it has been to be the only disabled member of the staff in most of my posts. I have had to fight people's prejudice and patterns around hearing impairment single-handedly. I started to think about how different my working life would have been if I had known I could go to the union when my workplace failed for a whole year to get me a phone I could use, or when they neglected to put up a loop somewhere where I was giving a lecture. The fact that I had never even considered the union as an option shows the depth of my isolation. Incidentally, I am now on the negotiating committee of my branch and am to be a delegate to a national Equal Opportunities Conference.
Since starting RC six years ago my life has changed in many ways, particularly in relation to my deafness. I have (with a great deal of support from counselors) become able to think more clearly about my needs as a deaf person. I am just beginning to get glimpses of the truth that deafness is not my problem-it's other people's reactions that make problems for me. I have begun learning British Sign Language, made contact with people in the deaf community, and learnt a lot about my people.
There are good things about being deaf. For instance, I have phenomenal powers of concentration. The only way I hear things is if I decide to make a conscious effort to hear. If I decide not to hear, and to focus on some paperwork or a creative activity, there is no noise on earth that will shake my concentration. My years of training in reading other people's body language and listening with all my attention have led to inspired counseling sessions. These same skills have helped me to create and nurture wonderful relationships with my own and other people's children. I notice how people are, regardless of what their lips say.
I still have a long way to go in order to fully reclaim pride in myself, but I know this much: I have never regretted being deaf; I have never wanted not to be deaf. I have regretted the ways in which I have been treated as a deaf person, but I would not give up this condition I have even if I could. I do not now want, nor have I ever wanted, to be 'cured.' Being deaf is as much a part of me as having brown hair or a loving disposition. I wouldn't be who I am if I wasn't deaf, and who I am is just fine.
Whilst writing this I discharged a lot, and I've really discharged hard by using it in sessions. Counsellors have read this letter aloud to me while I have cried and cried. Never having believed that anyone was interested in this information, the contradiction is in having a hearing person read it who is really interested in knowing what it is like for me to be deaf and who really wants to know my story. At the same time I have had to deal with a lot of fear that this information will not be treated respectfully.
I think it would be useful for all of us hearing impaired and deaf people to know each other's stories and to have a higher profile in the RC Community. Everyone will gain by learning more about us and about how oppression affects deaf people. I have met other deaf RCers at workshops from time to time, and we are always delighted with each other. We need each other's support and information. In my local RC Community, I am getting closer to where I want to be in terms of my deafness. I have a deafened assistant in the fundamentals class I am teaching, and we are able to support each other and educate others about our needs more easily together. One person in the group has a deafened partner, and another person recently joined the Community who grew up in a deaf family and can use sign language. One member of the Community is learning signing and others promise to take it up 'one day.' I find that in thinking about other deaf people's needs I am more able to think about my own, and I know that contact with others will move me on in my re-emergence.
Christine O'Mahony
London, England