HEALTH

Since being diagnosed with Usher Syndrome at age 12 life has been incredibly challenging.

Having been severely deaf from birth I knew no different. I wore hearing aids, I had lots of speech therapy, a teacher of the deaf who visited me in mainstream school and a teaching assistant to help out in class. Lipreading comes fairly natural and a very valuable skill as lipreading along with body language and gesture help the deaf hear with their eyes.

I was the only deaf child in my class, however, having been born deaf I had met lots of other deaf children and took part in a few gatherings over the years. For me deaf was doable.

Deafblind is very different to deaf. Deaf is challenging, communication the main issue, however having been born deaf I had all coping strategies in place and I was ok. I am so thankful I have speech, it was a decision my parents made for me when I was very little. Communication has become one of my strengths.

I did learn BSL to enable me to communicate with those I know who use it before I was registered blind and on a good eye day in the right environment at the right distance I can just about communicate this way but it is both difficult and exhausting.

There are those with Usher Syndrome who are first language signers and I hope for them they retain more sight than I have to continue their chosen mode of communication.

Deafness did not prevent me from accessing books or school work, it did not prevent me from playing sport, I was just like my friends, I just didn’t hear so well, however I had my hearing aids and I was ok.

Usher Syndrome took away my confidence just at the time my friends were getting theirs and becoming independent. I could not access school work, I kept falling over, walking into people, my eyes hurt, the sun burnt my eyes and I couldn’t see, I was totally blind in the dark. I was dizzy going from inside to outside. Depth perception became an issue. I had to give up sport and for me that was it, I didn’t want to leave the house.

Reality hit home, going forward my condition would dictate a lot of what I can and cannot do. Depression set in. I isolated myself making excuses for not wanting to go out and although I shouldn’t have done that I did discover the world of technology and accessibility. I learnt how to make awareness videos on my macbook and I used that skill to try to educate my teachers about my needs. I am proud to say those videos went on to have me nominated for Young Deafblind Person of the Year in 2010, I was the youngest to win that accolade back then.

I quickly learnt the only way to move forward was for me to speak up, alongside my parents constant battle for funding and support. I cannot hear properly and my sight is very poor, however, communication is my gift.

I could recount untold issues with my support however I have chosen to use my bad experiences to try and educate others and to concentrate particularly on awareness, accessibility, assistive technology and enablement.

I am now 21 and passionate about making a difference to others. With the help of my parents I set up a charity supporting those living with Usher Syndrome www.molly-watt-trust.org I consult on accessibility, I blog a lot and I am a motivational keynote speaker.

It is my belief awareness will make a difference, that those working in technology can make a difference if they understand need.

To read more about my personal journey take a look at my website www.mollywatt.com and feel free to contact me.

Molly Watt