I have always simply wanted to be a part of society and when I began losing my sight at twelve, having been such a visual person, like deaf people are, I found the isolation of not being able to follow simple text devastating.
I am very glad I have grown up in an age of growing technology and that I have been able to benefit from it. Probably the only good thing about being diagnosed with Usher syndrome while at school was that I was young enough and willing enough to learn how to use the technology made available to me.
Looking back, the first technology that worked for me were analogue hearing aids at 18 months followed by a radio aid with lots of wires when I went to nursery at age three. The hearing aids changed to digital when I was eight, and after a little getting used to I could hear the difference. I remember leaving audiology with my mum and hearing two sounds that made me jump, one was the sound of my zip as I did my anorak up and the second the rustle of my hair across my anorak. I’d never heard either before. It was after this I heard bird song for the first time – I feel lucky to have this as I know my profoundly deaf friends will never hear these things.
By twelve, my rather bulky radio aid which I had worn in a “bumbag” with its wires connecting to my hearing aids went too. Replaced with a much smaller version, wireless, all Bluetooth and far less obvious which I really liked. At the same time as my new state-of-the-art radio aid and my new school came my Usher diagnosis and my world was about to change beyond all recognition.
My sight loss was quick and I didn’t really understand what was going on. Environmentally my world had become dangerous but that’s another story.
The simple things I’d taken for granted were gone. I could no longer access books or work sheets at school, I couldn’t see the whiteboard, the sun was a nightmare, changing lighting conditions… I was now having to rely on more technology and somebody able to use and control the machines that could provide me with modified materials.
Sadly, it is a big mistake to think enlarging is acceptable in a school / college / university environment – modifying means making reading materials accessible. For me I would need materials put onto buff A4 paper with a font size of 18. I would not want A3 paper of any description, you’ve no idea what hard work that is, if like me you see the equivalent of looking through a Smartie tube, just imagine how long that would take me and how tiring it would be! However, having experienced dreadful modification I am quite expert in knowing what I need and if I don’t get it I will ask.
I have been lucky enough to have been introduced to Apple products a few years before being diagnosed with Usher syndrome and also having a friend whose mum worked for Apple, amongst other things training people how to use their machines. Looking back, how lucky was I?
It wasn’t long before I had my own MacBook and very quickly learnt how to use their built-in software. I could access the internet, do lots of my school work by simply enlarging the print, changing fonts and or contrasts, and I could, via a piece of software, access whatever was on the whiteboard on my MacBook.
I know some aren’t lucky enough to have use of Apple because of cost which is such a shame. The alternative is a PC with very expensive software and to be honest the two together easily equal the cost of a MacBook.
I use an iPhone and an iPad which, like all Apple products, have excellent accessibility including VoiceOver, and keeps me contactable when I’m out. You can see Apple keeps my world accessible, but the one thing I struggled with on my iPad was the fact it is backlit and whilst I can download books onto it, something very vital for my study, I could read only for very short spells and then my eyes were painful and there’d usually be a migraine, which was completely miserable and very frustrating.
Then we discovered Kindle, a much cheaper gadget to read from than the iPad and the basic model is not backlit, meaning no glare. My mum got one for her birthday and I basically took control of it until a dear friend bought me my own. The Kindle allows me to download books, adjust the font and the contrast is great for my Usher eyes. Now I can read for up to an hour before my eyes tire – for me this is fantastic, several chapters instead of several pages!
We had decided some months before my discovery of Kindle to set up the Molly Watt Trust to fundraise specifically for people with Usher syndrome and there it was, our first project would be “Access to reading”.
After only ten months of sheer hard work fundraising we have funded and provided Kindle eReaders and enabled almost 50 people with Usher syndrome to have “Access to reading” and whilst the application forms keep coming in we will continue to fundraise.
The testimonials from those who have received Kindles from the Molly Watt Trust have been heartwarming and keeps us focused on helping as many as we can.
There is nothing like disappearing into a book and we should all be able to do it……. Accessibility really is key.