Claire Morley

Claire Morley

I was born in 1974. When I was two it was determined that my older sister Catherine was deaf so I was tested too. I was also deaf. I got my first pair of hearing aids then. I don’t remember life without them.

We are a catholic family and our local catholic primary school wanted to provide places for us and give us any support we needed. This was before teaching assistants existed. At that point the local education authority wanted to send us to a specialised school for the deaf but our parents resisted. I therefore attended mainstream education and loved it.

I wore a “phonic ear” radio microphone system which in those days was the size of a brick and worn in a harness on the chest. Our grandma sewed us fancy harnesses to match different outfits, I felt very snazzy!

To me that was normal life. The other kids just saw me as Claire, I was no different.
As a kid I never had night sight but again that was normal for us. I do remember being amazed that other people could see in the dark, I was very impressed.
Fast forward to age 23. I was referred to Manchester Eye Hospital by my optician. He had seen something and wanted it checked out. I didn’t give it much thought.
Two days before Christmas I took the morning off work and went to my appointment.
Well I got the shock of my life. The consultant moved his fingers at the side of my face and said “tell me when you see them”. And this sick feeling plummeted in my stomach. In that instant I realised I couldn’t see them and I should be able to see them. He then asked me about my night vision and my balance. You have something called Usher Syndrome, he said. He then went on to say I would lose my sight but hopefully retain some useful vision, told me there was no cure and sent me on my way. I went back to work and worked the rest of the day in a daze.
It was textbook how NOT to tell someone.

The biggest thing on my mind was that I then had to relay this bombshell to my sister. Finally, an explanation as to why we were born deaf, but here’s the next bit – we are losing our sight. That was hard.
It sounds daft but neither of us had any idea we were visually impaired. Once I knew, it was obvious. So much started to make sense, the clumsiness, the night blindness, the not recognising people from a distance.
In one way I was glad to have a name, a diagnosis.
My kind and lovely GP wrote to me, apologising for not having heard of Usher Syndrome and therefore not picking up on it. I understood why he hadn’t though – nobody had heard of it. This was the 90s, before the internet had really kicked off. I felt like a very rare bird, so few of us were known about.
These days children are being diagnosed much much earlier and of course, for parents it is devastating. As a mother myself I know you don’t want your children to suffer in any way.
This is what I say to parents in this situation:
It’s ok. It really is. I’m 43 now, married with a beautiful daughter. I got my degree, my post grad, and went on to have a rewarding career in social services. I have just had a cochlear implant this year, last year I got my guide dog Thea. I also use a long cane if Thea is having a day off. I currently still have some useful vision.

I use apple products (iPhone, iPad, Apple Watch) as they are the most accessible for me. I plan to learn Braille (when I get a chance!) and I’ve also learnt the rudiments of deafblind manual sign language.
It’s not the end of the world.
Life is different but the value is the same.

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