TESTIMONIES
It will be noted in this section that not all deaf people use BSL and the two people who have kindly offered a testimonial demonstrate that you can be severely or profoundly deaf and not use sign language. This does not detract from the fact that they may still require the services of a home for those who are deaf as communication can still be problematic even when one wears a hearing aid or has a CI (Cochlear Implant) fitted.
Testimony from a Deaf Lady
I was about five years old when I realised that I was the only one in my family that wore a hearing aid. My parents, and my sister did not have to have one, and I wondered why. So at the next dinner time when the whole family were
sitting down together I asked my Dad why I had to wear a hearing aid and no-one else did. He said it was because
my ears don't work properly. So I asked if his ears worked properly and did Mum's and my sister's. He said "yes". I
asked "why?" His reply was that he did not know, but that the hearing aids were to help me hear. It was that day
when I realised that I was deaf.
I went to a normal primary school where I was the only deaf pupil there. It was a small school so I coped with lessons
etc. At the age of 11 I progressed to a boarding school for the deaf. It was the first time I had encountered so many
other deaf people like myself. It was very strange at first because I soon realised that some deaf people could speak
well, others did not and required assistance via means of sign language. However, I soon adapted there and could
communicate with everyone . I think my biggest surprise was how easy it was to understand the teachers. Classes
were small and everyone sat in a half moon circle so that each person could see the other whilst talking. The teachers
faced the class at all times. I found following lessons really easy and had thought I had coped at primary school!
When I left school, I had to re-integrate into the hearing world again. I was going to college. That was quite difficult.
But, because I had background from attending a normal primary school where no-one was deaf; I had to remember
how I coped. It was back to the front of the class again. I could not hear from behind if anyone asked questions etc.
I had to take notes, which was very hard as I had to memorise a few words, scribble them down, take in the next few,
scribble those down etc etc. My handwriting started off neat, and was a scruffy scrawl after an hour of taking notes!
My lecturer was aware of my hearing loss and tried to accommodate this by pausing every now and then so that I
could take notes, look up, and take the next lot of notes. It was hard; but I managed to cope. My colleagues; once
they got to know me were very helpful and those that were closest friends to me, sat at the front with me, and let me
copy off them if I got stuck. I still keep in touch with them today after 28 years! But; I think the best breakthrough I
had was when they asked me if I'd like to join them on an outing to see "The Elephant Man" at the cinema in London's
Shaftesbury Avenue. It was SUCH a compliment to be "one of them". I gladly accepted, and from then onwards, they
did their best to help me through films, social functions etc. It was by no means perfect; but I made compromises as
did they.
I tried to join Deaf Clubs in my area, but this was unsuccessful; mainly because of my good speech - to them I was not
deaf; so I felt like a fish out of water. I then tried the Hard Of Hearing Club in London called SHIP. This was much
more geared to people like myself. I went there for a number of years until the group moved to another part of
London and I could no longer attend as I had other commitments. But I made good friends with some of them and
keep in touch with a few of them today.
Professionally; I have found that my deafness has made it harder for me to get the jobs I really want. A lot of people
think that because you are deaf you are not able fulfil all the requirements of a job role. This is often with prejudice;
and not letting the deaf individual explain how some difficulties can be overcome and provide reasonable
adjustments. This has been fraught with frustration over the years. Those that knew me well gave me the chance if
they were able to persuade their bosses to let me have a go. Otherwise; I have been "blocked" or would be blocked
unintentionally from getting jobs I know that I can perform with excellence if it hadn't been for the select few
colleagues who really knew me. When I was made redundant at the end of 2010, it took me 13 months to get
another job. I actually got the job I am in now, because I was recommended by a colleague. The current system
where you apply online is fine, until you get a telephone call - then you are stuck! You cannot tell someone over the
phone what your skills are and this often lets you down. It is a hard world out there!
I was born profoundly deaf; have integrated with hearing people all my life. I have adapted well to the hearing world;
but I still come across stumbling blocks in my career and when I am out socially. I now have a cochlear implant which
has been invaluable to me; but; I am still deaf; and I will still have to struggle against all the odds. I am fortunate that I
have excellent speech and good friends who rate me; but it could have been a very different world if I did not have
those things or a supportive family.
This one is by a deafened lady
The first time I realised I must be deaf was when I was at secondary school standing outside a classroom critically
discussing the faults of the teacher teaching inside! It was quite a shock when she suddenly threw the door open,
pulled me inside and started telling me about my faults! I remember standing there thinking - how did she manage to
hear through the door?!
After I left school I started work, and after a walking holiday with my aunt she insisted I went to see my Doctor about
my hearing. He tested it with a tuning fork, which he held at various distances around my head. When he realised I
could only hear it when he held it against the actual ear-hole, he referred me to the National Ear Nose and Throat
Hospital in London. When I arrived for my first appointment the reception area was a huge high ceilinged room with
brick walls, lino floors and metal chairs. The receptionist had a quiet voice, so with hindsight I wonder how many
patients got into see the consultant? After an assessment, which included marching on the spot for 1 minute and
being tested for allergies, they decided it was nerve deafness and I received a behind the ear hearing aid.
A few years later I moved to the South coast and attended the nearest local ENT clinic and I was assessed by an
audiologist who just said: "Hello" as I walked into the room. She then asked me to take my hearing aid out and then
proceeded to hold a very one sided conversation with me!
After I had my children I returned to work and found my hearing had dropped because I was having difficulty hearing
on a volume controlled phone. I decided it would be a good idea to try lipreading classes, one evening a week. For
the first time I met deaf people who weren't drawing their pensions! Although I wasn't very good at lipreading I learnt
about deaf awareness: where to sit in a restaurant (back against the wall); how to ask closed questions (a question that
has only yes or no for an answer); and to stand in such a position, that the person you are talking to has the light
upon their face. I also took BSL stage 1 sign language lessons, as I thought this would help me when I lost more
hearing. However, I found this even more difficult than lipreading. Eventually, after 3 attempts and failing the exam, I
decided that sign language was not for me.
I went back to College and did a couple of A-Levels part time, and asked for a notetaker and was surprised when, after
being told that they only had a few and did I really need one, one arrived and made the lesson clearer and much less
stressful. However, the next course I did was in a different College and again I asked for a notetaker, but was told as it
was a small class I wouldn't need one! At the end of the course the teacher did apologise, but of course, by then it
was too late!
I am a member of the NADP (National Association of Deafened People) and I attend their conferences; the last one
talked about technology and how it benefits deaf people. Many of us stayed in the same hotel and were able to
impress upon Management that the television in each bedroom was useless to deaf people without subtitles! Poor
subtitling is frustrating although I did not complain; but through the NADP I learnt about TAG - an organisation which
campaigns for equal access to telecommunications and broadcasting for deaf people. So when there were problems
with subtitles: too fast or disappeared, I would advise NADP who took it up with the broadcaster.
I have only been to the theatre once as I find their hearing loops useless! I once went to see EVITA and it was a
stagetext performance, meaning it had captions beside the stage, so people can read the script. Unfortunately I didn't
have my glasses and was too far away to read the captions effectively. As I was now a member of NADP I could
speak to one of the founder members and tell them I didn't feel the captions were large enough.
After a long unsuccessful telephone conversation with a relative who was simply attempting to give me their new
postcode, I decided I was too deaf for a volume control phone and decided to buy a phone I could use with the Text
Relay Service. After doing some internet research I asked the email group for advice and the top recommendation
was for the ScreenPhone. I bought one and it has made using the phone very much easier. I even have my relatives
postcode now!
All in all I am glad I joined the NADP as this deaf charity mirrors my view of the world. Unlike some of the other
members I lost my hearing very gradually and still only have a severe loss in my right ear, so I have some usable
sound to help me understand speech. It is a small charity, so I feel any feedback or opinions are listened to, if not
always agreed with! But through such charities life for deafened people is made so much easier.
This Testimony is by a Deafblind Lady
This week I watched a blazing Spanish sunset on a beach in Ibiza: a molten sun melting into a sea shimmering with coloured light. It was an everyday miracle - the turning of day into night. But for me it held a special poignancy, because it could be among the last I see. The sunset is, in fact a perfect metaphor for my own diminishing sight: as the light ebbs from a darkening sky, so too, is it fading from my eyes.
A few months ago, in Femail, I told the story of how after being born profoundly deaf, I heard for the first time last year at the age of 39, thanks to life changing cochlear implant surgery. The moment when the implants were switched on, when my silent world exploded into a cacophony of sound - of ticking clocks, birdsong, running water, traffic noise and children's laughter - was overwhelming, I burst into tears of joy! The first sound I heard was a human voice, then the tap of shoes along a corridor. I cried at the sheer wonder of it; at the everyday wonder of sound.
Yet, just as one new sense was opening up another was deserting me. My sight was irrevocably dimming! For I have usher syndrome, a genetic condition that caused me to be born deaf and since my teens has slowly and progressively been robbing me of my sight. And now, a year after I heard for the first time, the darkness is closing in on me. In the past 12 months my vision has dimmed to such an extent that faces are fading from my view. If I looked at you across a table, I might only see your eyes, nose and lips. This is the diminishing tunnel from which I view the world. Soon, it will leave me in complete blackness! I don't know when that day will come, but I feel it approaching ever closer. And each night, before I go to sleep, I only hope that I will wake to see another day.
To lose one sense just months after recovering another, might seem a cruel blow, but it has made my new sense of hearing more precious than ever! I treasure the independence hearing has brought me; the vivid new sensory world it has opened up. I may not see traffic approaching, but I hear it's roar as I cross the road. I may not see birds, but my heart will lift at their song. And as the darkness encroaches, hearing will become my window to the world around me; the dimension in which I shall learn to live.
Now, in my mind I am consciously building up a library, that I can imagine, when my sight has gone. i will recall the sweet face of Cassie, my niece, who is five; my fresh white kitchen; the glitter of the chandelier and burnished mirror in my hall. it is only when we stand on the brink of huge loss that we really learn to cherish what others accept unthinkingly. I never felt burdened by my deafness. I'm determined too, that i will learn to live with the small impediment of blindness. i will continue to wring joy out of life. For that is what I have always done!
As a child growing up in the seventies, with two loving parents - my Dad, Al, a cable contractor and my mum, Ann, a housewife- my deafness may have set me apart, but i never felt isolated by it. My wonderful mum made sure of that! From the age of seven, at her insistence, I went to a mainstream school, in my hometown of Gateshead, Tyne & Wear. My deafness did not feel like an impediment: I'd never been able to hear, so I didn't miss the voices around me. However, I was still fitted with a phonic ear - an amplifier strapped to my chest, which worked alongside a hearing aid. It amplified low sounds (white noise) as it was a comfort to have some sound, even if I did become the butt of bullies because of it: there were cruel jibes from children, who called me 'robot'.
As I grew older, I sang along to Duran Duran on Top of the Pops with my sisters, Julie, now 44 and Alana, 35, but only because I lipread the lyrics from them. As a teenager I would be on the dance floor, moving in time to the vibrations, that pulsed through my feet! I never felt constrained or marginalised because I could not hear. There was nothing I felt I could not do; no mountain I could not climb! I enjoyed relationships - and heartbreaks - like any other young woman.. My deafness never held me back from experiencing everything that life had to offer. But if someone had then threatened to take away my eyes, my channel of communication with the world, I might have succumbed to despair! My eyes, of course, were doubly important, because I was deaf. They allowed me to lipread, to learn to speak in a Geordie accent because I spent hours and hours - years in fact - in speech therapy, learning to mimic sounds. But then, the day came when my vision started to go.
It was in my teens that I first noticed things were not right. As I drove around in my greenn Ford KA in my career as a disability rights co-ordinator, the signs that all was not well began to accrue. I'd park and not notice a bin preventing me from opening my door and I would fail to see cars coming up behind to overtake. I passed this off as lack of concentration until, finally, I confronted the inevitable and went to see my GP, who referred me to a consultant. A series of eye tests revealed the truth I had been trying to evade - though I could still see enough to get by, my sight was so poor I was officially blind, I had retinitis pigmentosa, a symptom of usher syndrome, where the retinal cells die. I left the consultant's office thinking: "what next?" I could still see as well - or rather, as badly - as I had when I'd walked into the hospital and yet that awful diagnosis had changed everything. And then the tears came. You could take my arms, legs, anything, but not my eyes, not my eyes!
I thought of Mum, I'd never even heard her voice, yet I knew every inch of her smile. I could tell her my secrets and take her advice simply by watching her lips move. i thought of my sisters and their constant good-humoured mickey-taking. They would translate phone calls from boys who called for me as a teenager, making up false confessions of love from them to make me giggle! And I thought of all my friends: the laughs we'd had, the jokes we'd shared. I didn't want to be an outsider. I didn't want to be cast into darkness, unable to share my life with them. I sank into a deep depression that lasted for years. I was forced to give up my car then my job. I spent weeks sifting through photographs, trying to burn memories onto my brain, while I still had the chance: my Mum's face, the outfits she'd put us in as girls, childhood trips to the seaside; my first holiday abroad with boyfriends, the girls, my family: my whole life, stored away in a capsule in my memory!
I'd stand in front of a mirror wearing a Breton striped top and count how many lines I could see. I watched over the years as they vanished into a blur. I learned to use a white stick; I trained with a Guide dog. Seared in my mind is the vision of a blind woman, reflected in a shop window, holding onto the harness of a guide dog. My heart went out to her. Then, I realised it was me! And then a miracle happened. A few years after I was diagnosed as blind, I was walking in the peak district, with my guide dog, Matt. As he raced ahead of me, weaving up and down the grassy banks, the wind blowing back his black velvet ears, I looked up and for the first time in years I allowed myself to see the beauty of the landscape. Despite the shadows closing on my vision, I could still make out some of the wonders around me: the sky was turning pink as the sun set, bathing me and the valleys beyond in a warm glow. All these years I 'd wasted worrying that my sight was about to leave me and yet there was life right in front of me. Why stop looking? I took in that view and vowed never to take my eyes off life while I still had them!
I left the Peak District that day a different person and one of the first things I vowed to do as a result, was look into cochlear implant surgery. I had heard of it, but had no idea if it would work for me. However, instead of making myself a victim, I decided to empower myself. If fate was to rob me of one sense, I would do my hardest to restore another. And that is how I found myself propelled onto the world stage! More than 9 million people watched me on youtube when Mum filmed me hearing for the first time! In those first few days my brain was overwhelmed with different sounds and I found that my ears did the job of my eyes, too. If someone left the room to make a cup of tea, my hearing filled in the silence. I heard the whoosh of the kettle being filled, the click of the fridge opening, the slosh as milk was poured into a mug. I had never realised until that moment just what the gift of hearing would bring me; those small insignificant sounds, coloured and heightened my life, making my flat world three-dimensional.
So, as i became accustomed to hearing, I built up a library of sounds and in those exciting first weeks and months, I didn't notice my sight was slipping away from me. My focus had been on hearing life, not seeing it; the roar of the crowds at my first football match; the moving songs of my first West End show; the sounds of far away cities such as Hong Kong. And among all of this there were little things that meant the world; Little Casey running into my house, so proud in her grey skirt and royal blue cardigan to tell me about her first day at school. While I hung on every word, I realised i could barely distinguish between the colours of her uniform. But I had come to a wonderful realisation; going blind was no longer a matter of fierce regret as it once was because i had Casey's sweet voice as compensation!
So, losing my sight no longer fills me with dread because I I now have another sense to compensate. That is not to say that I don't wish that this progressive illness wouldn't just stop in it's tracks or that there wasn't another operation available that could halt or reverse it's progress. However, I have reached equanimity; there is no point worrying about what I can't control. There is, instead happiness to be found in places I would like to visit; Glastonbury festival; working my way around the seven wonders of the world; dancing on a beach in Rio. And the simple wonders of life; the lit up faces of Bangladesh children when I take hearing aids to them. I might be going blind, but life feels exciting because i have been given the impetus to enjoy it while I still can. That makes me the lucky one! So, I savour even the onset of my parents greying hair because it means I have kept my sight long enough to see them grow old! i just hope too, that my eyes serve me long enough to see Casey grow up a little more, to see if she ends up looking like her Mum or her Dad. I have spent this past week in Ibiza with Casey and Mum and while others may tire of her endless One Direction inspired dance routines, I am thrilled by every single one of them. Because - just like the sunset, who knows how many of them I have left?
Jo Milne