When I look back I can see I isolated myself when I was first diagnosed with Usher Syndrome.
I could carry on as a deaf person, no difference. I went to school, I was anxious as I struggled to cope with my changing world. I couldn't wait to get home to the safety of home and my Laptop. I'd always have an excuse not to go out!
Communicating online was easy, back then we all had Bebo and MySpace, before Facebook and Twitter, I felt no different!
I was in my bedroom chatting to my friends, I didn't have to think about falling over, walking into things or people and although my eyes were terrible and often sore and tired I had a little more sight than I do today, it was ok!
What I sort of did but didn't realise was I was isolating myself, the Internet allowed me to do so because I could and because it made me feel "normal" but I was in denial, a very cosy place to hide until hiding is no longer an option.
I have blogged about "coming out" as Molly with Usher Syndrome and as painful as I thought that would be it wasn't and it made me feel much better, after all I was only kidding myself deep down! I've found if people understand me and my challenges they are supportive without being patronising.
One of the real positives of accessing the Internet for me has been social networking, bringing people with Usher Syndrome together, as an American friend once said "You don't find somebody else with Usher Syndrome on the next block".
Usher Syndrome / deafblindness is an isolating condition, by definition and yes it's rare but we don't want to feel alone or different and now we have access to each other, we can support each other, inspire each other, share experiences and we can raise awareness of our condition and hopefully make a difference.
At a recent event I was asked what my favourite piece of technology had been and of course my hearing aids have to be right up there as they along with the best support, hard work and determination I'm able to communicates with speech.
Communication is something most take for granted but it really is something I value particularly now I'm blind, deafblind - I can explain where I'm at, what I need and I try to use this ability to help others with Usher Syndrome.
After my hearing aids came my first trusty MacBook and the reason, besides what I've mentioned above was as my world closed in my MacBook allowed me to continue accessing the world because of its unique built in accessibility features and at 12 years old I learnt how to use the functions with little help and I feel very lucky to have grown up with this technology.
I hope technology becomes more accessible to all and that developers consider the individual access needs of all.
At that very same event I was asked who inspired me most and besides my close family my reply was Helen Keller because not only was she deafblind but she did amazing things without the technology I totally rely on, an incredible lady. I wonder what she would have thought about today's assistive technology?
Happy Birthday Helen Keller 27 June
