Disability

My son Terry (names have been changed) is 8 years old. He is profoundly deaf and wears a cochlear implant. He attends a mainstream school with a Hearing Impaired Unit. He is educated for core subjects including English and Maths in his mainstream class with the support of an Educational Communicator.

I have had concerns about my son’s progress for quite some time now. When speaking to his class teacher I was reassured that he was doing well academically and progressing well. This has been a pattern that has been repeated at every parents’ evening since he started school with various teachers. At no point has a teacher looked me in the face and been upfront and transparent with me. Looking back through his school reports I am aware that this is not the case.

He has not progressed academically as would be expected and his attainment is quite a way below the national average. I think that it is disgusting that I can be mislead in this way. My son is not doing well in school and their expectations of him are low. Had I not known a little about this from experience of previously working in a school, I would have taken them on face value. This suggests to me that there are other parents out there who believe their child is doing well when this isn’t true.

It was only when I had an independent assessment done that I realised how far behind Terry actually is. He is approximately three years behind his peers. The attitude that I have had from the school including the Special Educational Needs Co-ordinator and the Teacher of the Deaf is that this is perfectly normal for a deaf child and not to worry. I find this astonishing. Deafness is not a learning difficulty. There is no reason, with the right support and attitude, that my son should not achieve academically. The support from the school has been inconsistent at best. Input from a speech and language therapist and a qualified Teacher of the Deaf has been patchy.

I am now in the process of fighting the Local Authority so that my son can go to a specialist school. It’s a very stressful time and really emotional. All I want for my child is what every parent wants – the right for their child to have a good education and to be supported in an appropriate way so that they can achieve their full potential. Trying to remove my son from mainstream teaching is not something that I ever thought I would do, however whilst this culture of low expectation remains in mainstream provision, I feel that I have no choice. I wholeheartedly support the Close the Gap campaign that has been lead by the National Deaf Children’s Society and urge other parents not to take reports of good progress at face value.

Deciding to have a cochlear implant as an adult has been to date the hardest decision of my life and one I didn’t take lightly. You may think ‘wow it will make you hear again, surely it’s a no brainer’ but it’s exactly this attitude which made it so much more difficult for me.

You see, a huge part of my self identity is my deafness. It took me many years to get to this point but I was and still am proud to be Deaf. My life experiences, character traits and attitudes have been shaped by being Deaf and they are an integral part of who I am. I am part of a Deaf community, I have lots of friends who are Deaf, attend social events for Deaf people and work with Deaf people. We have a rich culture and heritage and a beautiful language – British Sign Language (BSL). At no point in the process did I ever want to be ‘hearing’.

So why go ahead and have a cochlear implant I hear you ask. For me, having been born profoundly deaf in one ear and severely deaf in the other (although I was profoundly deaf in both ears by my early teens) I used a hearing aid and relied upon it especially to help me with lip-reading. It was only when as an adult I lost the residual hearing in my left ear that I could no longer use hearing aids.

Life for me became so much harder. It wasn’t what I was used to and I found it difficult to adapt. I struggled to communicate with my ‘hearing’ friends and most importantly to me I missed the sound of my son’s voice and music. Previously I had existed happily in both worlds, the ‘hearing’ world and the ‘Deaf’ world. I found myself avoiding situations with hearing people as much as possible, instead choosing to spend time with BSL users where I felt comfortable, safe and included and still do.

After some time, though, I realised that I missed the ‘hearing’ world. This environment that I was distancing myself from was one that I had grown up in and was also part of my identity. A cochlear implant had been suggested to me many times before but I had always thought it wasn’t for me. It was only after much soul searching that I agreed to go for an assessment. Throughout this process I learnt about the operation required, the risks involved and spoke to others who had already had cochlear implants. It was a really difficult and emotional journey for me.

Finally, I decided that to me if I could still take the implant off then I was still Deaf and that only I have control over my self identity. I know several people who did and still do disagree with this idea. Cochlear Implants have always been an incredibly emotive subject in the Deaf community. I was petrified that I would lose friends because of my decision. I have been lucky enough that this has not been the case. I fully respect everyone’s opinion on implants and can only say that I believe that I have made the right decision for me. I would never suggest anyone else has one as I believe that it really a personal choice. I went into hospital for the operation with very low expectations.

So how did it work out? Well, I can hear better than I have ever before. I love music again and can cope in most situations. At times I wish I couldn’t hear my son’s voice as he’s now a teenager! I had underestimated the time, effort and perseverance it would take to be able to use my implant effectively. It’s important to stress that I cannot hear like a ‘hearing’ person would. I still struggle with some sounds, find noisy environments really difficult to cope with and still rely on lip-reading too. I don’t listen naturally and it takes concentration. If I am not focusing on listening I often miss things. There’s nothing more satisfying than getting home and taking my implant off, and I definitely can’t cope with putting it on first thing in the morning as I get sensory overload. I get incredibly frustrated with implants being seen as ‘miracles’ and what I see as misleading media stories which are inaccurate and dangerous as they promote unrealistic expectations. I am also aware that I am one of the lucky ones. I know people that have decided to have a cochlear implant (wiping out their natural residual hearing in the process) and have then hated them or they have not been very successful.

My son Lateef was born 12 weeks early weighing just 2 lb 8 ozs. He spent the first two months of his life in the neonatal unit. Lateef passed the initial screening test before we went home. It wasn’t long after being home that I realised that Lateef wasn’t responding to sound. He only reacted to toys with lights and never responded to the door slamming or sounds like that. I was so worried that one night I hammered a saucepan with a spoon right beside his cot. He didn’t respond at all. It was then I knew for certain that there was something not right with his hearing.

It was at this point my fight to get a diagnosis and to the root of the difficulty started. I telephoned the hospital and asked for an Auditory Brainstem Response (ABR) Test. This tests the brain’s response to sound. I had been doing my homework by this point and knew that this was the next test that needed to be done. I was refused this test as Lateef had passed the newborn screening test. I took him to the doctors several times but was simply ignored. A nurse even said to me that she understood that he was my first born and that I was bound to worry more. I was really upset and at my wits end as I simply didn’t know what to do. It wasn’t until I moved house and saw a different doctor that I was finally taken seriously and Lateef was referred for further testing.

Lateef had the ABR test when he was about 12 months old. I was told there and then that he was profoundly deaf. I literally didn’t know what to do with myself. I was at the hospital by myself and devastated. I felt numb. When asking what was next I was simply told a letter would be sent. I was not offered anyone to talk to or given any information. I left the hospital in a daze. I walked in the wrong direction for over an hour before I realised I lived in the opposite direction! When I finally got home I called my mum and that’s when I started to cry. I remember saying that he would never be able to tell me he loved me. I literally didn’t know what to expect or who to turn to. I had so many questions, for example how would he ever communicate? What would his future look like? I had only ever met one deaf person before who always communicated by writing things down.

The journey to a full diagnosis was far from over and incredibly rocky because Lateef’s ear was working ok but his brain wasn’t responding to the sounds. He was eventually referred to see a specialist at Great Ormond Street Hospital and had to undergo lots of different tests often under general anaesthetic. This was a very scary and stressful time for us. Lateef was fitted with hearing aids but hated them and refused to keep them in. In fact the amplified sound was too loud and damaged his cochlear. His behaviour was terrible at this time. He was very aggressive and would throw terrible tantrums. He had no real communication method and was so frustrated. Lateef couldn’t communicate with others at nursery so didn’t make friends and people I knew simply didn’t understand our situation. They would be very sympathetic but this wasn’t what I wanted. I wanted Lateef to be treated normally but with understanding.

It took until Lateef was three and a half for him to be diagnosed with Auditory Neuropathy Spectrum Disorder. As explained before this means that the cochlear was working ok but the hearing nerve itself wasn’t processing the noise correctly. This means that Lateef’s hearing was literally cutting in and out, at times he could hear and other times he couldn’t. To be honest by this point I was simply relieved to have a diagnosis.

It wasn’t until we had a diagnosis that I received any kind of support or advice or input from a Teacher of the Deaf. It was then that I started to learn basic sign language to help Lateef communicate. I decided that Lateef should have a cochlear implant (a surgically implanted electronic device which gives a sense of sound). This was not an easy decision to make but one in which I felt was for the best. Since his implant, Lateef’s language has come along leaps and bounds. In fact one of the first things he said to me was that he loved me, which was really emotional. He loves wearing his implant and has always kept it on. I also noticed a change in his behaviour for the better almost straight away. We didn’t meet any other deaf children until he started school. It was through meeting other parents and also my local deaf children’s society that I have met other parents and people who fully understand and are able to provide me with advice and support. More importantly Lateef has met other children who are deaf like him.

My view of Lateef’s deafness has changed over the years. I am incredibly proud of my son for who he is and wouldn’t change him for the world. His deafness has opened up a whole new life for us that I simply didn’t know existed. I feel very positive about the future and know that will achieve what he wants in life. My advice to parents is that you know your child best. Always trust your instincts regardless of what you are lead to believe. I also recommend anyone that has a child who has been newly diagnosed as deaf to research local groups and support as it really does make such a difference.

One of our experienced trainers, Emily Yates, ran a twilight training session with members of the student union at Queen Mary University of London last week. The session was attended by 16 students who are keen to volunteer in the local community. It was like a trip down memory lane for Emily as this was the university that she attended. I asked Emily what the highlight of the session was. She explained that for her it was seeing the positive transformation of people’s perception of disability throughout the session. This got me thinking about what perception do we actually want to foster?

It’s much easier for me to think about what we don’t want to promote than what we do. Personal stories and experiences are an essential part of our training sessions but we certainly don’t want our trainers to be seen as inspirational just because they are disabled. I always feel a real sense of discomfort when I see what is known as inspirational porn – a phrase coined by the late Stella Young.

You know the type of thing, the ‘if we can do it then so can you’ philosophy. That being said, some of our trainers are inspirational! Emily is still in her early twenties and is a accessibility consultant, travel writer, blogger and presenter. She’s a go getter and I am full of admiration for her. Therein lies the difference though. I do not think of Emily as inspirational because she has a disability but because I know her as a person and am aware of what fantastic achievements she has accomplished due to her sparkling personality and bloody hard work! Emily’s disability simply does not come into the equation for me in that respect. I always remember that intense feeling of discomfort at school when a French teacher said, ‘if Claire can do it then so should all of you’! My parents in a roundabout way stuck up for the teacher when I went home and said that it was obviously more difficult for me as I am deaf so the teacher was right. The more I thought about it though, the more uncomfortable I became with it. Yes ok, lipreading in French and learning to speak it was really hard work, but I had a natural capacity for languages that other students simply didn’t have so in my view the teacher’s logic was flawed.

We also need to be careful of implying that disabled people can do everything non disabled people can. This is an easy trap to fall into. We want to encourage a positive image of disability and show that disabled people lead normal lives. It is very easy to underplay the challenges that we face and skim over the things that we can’t do. I myself have been guilty of using the phrase I can do everything that you do but in a different way. When you actually look at things clearly, this is simply not the case however much it galls me. The same can be said of all disabilities. That said, we clearly must ensure that we are not seen as individuals to be pitied. I think the crux of the matter is that we wish to promote empathy and not sympathy.