By Sarah Petherbridge (and her Mum)
Welcome to Hear me out; a series of blog posts written to introduce you to the world through my eyes and, most importantly my ears, as a profoundly deaf person.
They will form a personal storybook that I hope will both entertain and educate on just what a difference an inclusive workplace and society can make for people with disabilities such as deafness.
As with most stories, it seems right to start at the beginning. To do that, I need to hand you over to my Mum, as my early years are really her story to tell. Just before I do, I want to say that my Mum and Dad became parents to a deaf child 50 years ago, before the support widely available today existed, and in a small rural town, miles from anywhere. They absolutely did the best that they possibly could in the circumstances of the day and for that I am completely thankful.
Sarah was born, by induced breech birth. We already had a son, our own home, and everything seemed set for a normal family life. How little we knew.
Sarah developed normally during the first year. She was a good baby at night and not easily disturbed. By 12 months she was saying “Mummy, Daddy, Bye Bye” but there it seemed to end.
She was alert and bright, but at her 2 year checks, the doctor became concerned. She was well ahead of expected development in all aspects, apart from speech.
About this time, a teacher of the deaf was visiting the local hearing assessment clinic. He believed Sarah had a high frequency loss which would be compatible with the circumstances of her birth. An appointment was made with the ENT Consultant at Exeter hospital for further tests.
We shall never forget that day. We were asked to wait after the tests and then told – not unkindly – that Sarah was deaf.
We sat in the small decrepit room surrounded by elderly people, clutching our much loved little daughter, wondering what had hit us, numb with shock.
I once read in the magazine called ‘Talk’ a lady’s description of her reaction to being told her child was deaf. She said she felt old and grey. So did I. Here I was, in a little market town in the backwoods, miles from the main centres of help, not knowing what help was available. Not knowing any other parents of hearing impaired children. Not knowing what deafness meant for a child.
Why should this have happened to us? I was the most unsuitable person to cope with such a situation. We were older parents, not highly educated nor well off. I’d never known personal tragedy and was totally unprepared for this. I certainly wasn’t blessed with patience; I was set in my ways and expected things to go as planned. How on earth would I cope? I was distraught.
How would her brother cope? How would it affect his life?
How would my husband react to this diagnosis? He had recently lost his mother. I could sit down and weep when I felt depressed but he had to carry on at work for all our sakes.
Regardless, we had to accept that Sarah would always be profoundly deaf. Until we did, we couldn’t help her.
Soon, she was fitted with her aids; an acknowledgement to the world that she was profoundly deaf. Weekly visits with the teacher for the deaf began, and I arranged for Sarah to attend playgroup. She gained from the contact with other children and I had a period each week when I could relax. I became more deeply involved in the running of the playgroup and this helped to restore my own confidence. It saps you, having a disabled child. I felt envious and inferior when I looked at my friends and their hearing children.
Sarah still had no speech and this was a constant source of frustration for her. She would scream and lie on the floor if I couldn’t understand her.
I bought her a blackboard and easel so that she could paint and draw. At 4, she started ballet lessons. These all became outlets for self-expression until she developed her speech further.
In the meantime, we were teaching her language and encouraging her lip reading, something we had to get used to as much as Sarah. I have lost count of the number of times I broke or spilt things as I turned to face her when she spoke to me.
We used a speech trainer twice daily and often visited the library, shops, Post Office, and went on country walks. This helped to build her vocabulary of every day words.
We had hoped that by the time she was 5, Sarah would cope in one of the small local village schools. This wasn’t to be. The partially hearing unit at Pilton primary school in Barnstaple was the best place for her education. But it was 27 miles away.
A bus left our street each day taking students to the North Devon College in Barnstaple. A reliable student looked after Sarah on the hourly journey, where she was met at the college by taxi and then taken to school. This meant a 90 minutes journey each way. The care and dedication of her teacher helped her to cope with the long day, as did the unfailing kindness of the bus driver and her escort. As her speech was still limited, we had a little notebook which travelled with Sarah, to pass messages back and forth.
Academically she did well in the unit and began to integrate into mainstream classes a year ahead, still holding a place in the top half of her class and making friends with hearing girls.
Over her school years, Sarah needed much love and encouragement. Because she couldn’t hear the varying tones of my voice, she needed the comfort of physical contact. She didn’t like to see me looking sad and would say ‘why are you sad mummy?’ when I wasn’t really sad, perhaps just tired. She had to rely on my expressions for communication and sometimes placed undue significance on them. I used to sometimes wonder if she felt that I looked sad because of her.
The loving interest of Sarah’s aunts, uncles and grandparents was a great help, as was that of the inhabitants of our small town. For example, I first sent her to the local shop with a note, then I encouraged her to go and ask for perhaps two items, and gradually built up her ability to ask people for things. The assistants were always helpful and kind and this increased Sarah’s confidence in her speech.
When we first learned that Sarah was deaf, the task ahead seemed formidable. Yes, we had some bad times, but so much else besides.
The great satisfaction in Sarah’s achievements, sometimes things which one would take for granted in a child. The wonderful, dedicated people we have met and received support from. The wider, less self-centred view of life.
We soon learned that we were lucky. Sarah achieved more than we dared hope as a child. We were very intense at first and had we remained so we would have burnt ourselves out whilst she still needed us. We learned that ours was a marathon, not a sprint, and we found our own way to stay the course. For let’s face it, schools, teachers, and equipment can do so much to help our child but it is us, the parents, who are responsible for our child in the end.
Reading this back myself I will never underestimate how difficult it must have been for my parents, especially in the 70s, raising me. Society is still so far behind full inclusivity even now, that I can’t always fathom how they did as well as they did back then.
Mum’s words above actually come from a piece she wrote when I was 11 years old. Since she dug it out for me a few weeks ago, we have had lots of open conservations about the things within it. Not included above, was Mum’s memories of me as a pushy and persistent child. Which I’m sure I was…but I had to be.
Mum’s right of course, the parents are responsible for the child. But parents are just people. They cannot magically create an accessible, inclusive world for their children who, from birth, or through accident or illness, have a disability.
That is the responsibility of us all. Over the course of these blog posts, I hope to show you how, and why. My tales are a mixture of shocking, embarrassing, thought-provoking, and inevitably, funny. Together we can cringe, laugh and learn. I really hope you’ll join me on this journey.
Written in collaboration with Written by Lyds Ltd (www.writtenbylyds.com)
Read more about me Sarah Petherbridge