Feature

Strain your ears: you might hear something

It’s funny how people with perfectly good hearing can’t seem to listen to the ideas of deaf people, says Mark Heaton

Aged 45, I am a lecturer in a large university in the North West. Friends know that I am always busy in a variety of activities and never spend a whole week of consecutive evenings in. Mostly I am attending events, conferences, teaching or consulting on my specialist subject.

Not a particularly unusual story — but more unusual because I am profoundly deaf. Certainly it would be amazing news to the audiologists and health professionals I encountered during my early childhood. They might even feel a slight glow of pride. It would be severely misplaced.

After being diagnosed as deaf, I tried to get on with my childhood while being constantly interrupted and made to sit in a hospital chair straining for the slightest possible noises through massive earphones — muffled sounds which had no meaning and were not of the least interest to me. As this process went on, my keenness to communicate with my teachers, and even my very caring parents, began to wane as they seemed more bothered about those intermittent mysterious noises coming through the hearing aid. The professionals thought they had the whole subject sewn up and my parents hung on their every word. My relationships with the adults around me became more rather than less superficial.

But at school I met children I could relate to at a deeper level, deaf children who gave me a true education in a thrilling world by showing, pointing, relating and surreptitiously signing to each other when teachers were not watching. A dramatic contrast to the hours and hours working on different speech sounds with my teacher while life went on outside.

I left school and got a job aged 17. The shock of discovering that my ‘excellent’ speech was completely incomprehensible to my fellow workers was immense. I had gradually to re-learn how to deal with the world and the first step was to chuck my hearing aid in the bin. I don’t mean to be ungrateful but I need to say that I have found fulfilment, happiness and purpose in spite of the system which poured endless resources into trying to make me hear and speak.

That was 30 years ago and perhaps mine was a one-off case — a small statistical failure. Things have changed immensely and there is even a miracle solution now in the form of the cochlear implant, while mainstreaming has become the norm.

Or have they changed? Thirty years ago medics and teachers alike were united in the conviction that their prime goal was to enable deaf children to ‘hear’ and ‘speak’ to the greatest possible extent and to solve the ‘problem’ of deafness. I work in the Deaf Studies Department and every year get to know a variety of ‘products’ of the current system in the form of deaf students. A significant number of them still report that the ‘system’ has failed to accept that their priorities are completely different from those of the professionals who have so much power over them from early childhood. For them, and for most deaf people I meet, learning to understand some sounds and speak in a semi-intelligible way are only a small part of living life as a deaf person. Being valued for what they are, learning about life and understanding the world, as well as being understood, are far more important priorities which do not rely on the spoken word.

The sliding scale of deafness makes this a very complex issue and for certain children a technical aid may be all that is needed to help them achieve these goals. But there are still many children for whom that is only part of the solution and this group needs an acquired language, such as British Sign Language, from a very early age.

It breaks my heart to see headlines like the one in the Daily Mail (21 October 1997), ‘Implants really can make the deaf hear’. At the huge cost of £50,000, the cochlear implant is a success for some but not all, leaving many with the problem that they still fail to produce adequate speech to communicate with the hearing community but additionally have no other communication method during those crucial learning years. According to one American magazine, 66 per cent of children with a cochlear implant preferred not to use it — thousands of dollars effectively gathering dust in a drawer. Money that could have been spent more effectively on a sign language interpreter in the classroom, on providing parents with a wider range of choices and information about the route for their child, or on additional language support.

What I find particularly frustrating is that the powerful views and feelings of deaf people themselves are dismissed as readily as they were 30 years ago. This is in spite of the fact that we have a wealth of experience and information to bring to the crucial but very difficult debate over allocating resources for deaf and partially hearing children and adults. It bewilders me that we are not asked to contribute to that debate. Deaf people, and many disabled people, need some sort of forum where we can contribute our unique perspective and add enormously to professionals’ understanding of our lives. There is no reason to be wary of our views — just listen. It could make all the difference to the happiness of a few thousand deaf children in the UK.

.