Own the Equinox Day 24, Part 2: Awareness is Key
September 15, 2016
by Molly Watt
Molly is 22 years old and lives in Maidenhead, Berkshire, England. A consultant in the fields of accessibility, usability and assistive technology, a motivational global keynote speaker, illustrator, published author and avid blogger. Molly's determination to make a difference reflects in the work she does. Molly is also an ambassador and advocate for her own non profit, Molly Watt Trust, Sense and GN Resound.
I was diagnosed with Usher syndrome when I was 12 years old. It's not unusual in the world of Usher syndrome but to the rest of the world it seemed to be a big question mark with comments ranging from pity to disbelief.
The day of my diagnosis I didn't look any different. No different from the day before when I was, what now seems like simply severely deaf, I wore hearing aids, relied on lip reading, facial expression, body language and gesture and yet my world was about to change tenfold.
Everybody had heard of deafness and knew people who were deaf even if it was their grandmother or grandfather.
A child wearing hearing aids was a bit different but thankfully the support services in place in my area were brilliant. I learnt speech and communication. By age 6 I was virtually on a par with my hearing friends. I was a very happy and popular child educated in mainstream. Accept for my hearing aids and back then radio aid I didn't feel particularly different.
Usher syndrome was and is a totally different ball game. Nobody had heard of it. Very few people were trained and experienced in supporting anybody in school with it. My many friends, deaf and hearing, seemed to desert me or distance themselves from me. Clearly they didn't understand what was happening to me. All of this occurring at an already testing time in life, adolescence, the time when everything changes and for me the onset of blindness, too.
All of a sudden I not only felt different I was different.
I was falling over, walking into people and things. I couldn't read the white board at school. I was struggling to read my school books. I had what seemed to be a permanent headache. The people involved in my support tried to help but they hadn't supported anybody with Usher syndrome They tried but clearly didn't really know what they were doing.
What was even worse were those telling me they knew all about Usher syndrome. Telling me how I felt, my capabilities and generally thinking they knew me better than I did myself. That behavior was actually very damaging!
Thank goodness I have a strong family who not only kept me sane but found me some real support reaching out to others with the same condition.
It became very clear to me at 14 years old that I somehow needed to raise awareness of my condition to educate and inform those around me how I felt, what I needed and how they could help. I now know several support workers did attend 'Deafblind Awareness Courses' but it felt too little too late. I believe those of us with the condition know best how we feel and how we want to be supported. We are the experts.
As a result I isolated myself but in that 'timeout' I thought about ways of raising awareness.
Having always been a creative person the first thing I did was set about making awareness videos on my MacBook. They are now used as part of deafblind training here in the UK.
I made it simple because it is the simple changes that make the most difference.
My videos were just the start, I began speaking publicly whenever I could about the issues facing people like myself and about the lack of awareness of the condition. I began speaking up for myself and advocating for others who for whatever reason felt less able. The more I did the more I was called upon.
Awareness is the key to living with Usher syndrome. We are not the small group so many speak of. There are people with this condition being diagnosed at different ages and stages all over the world and we just want to be understood.
Lack of awareness causes isolation, loss of confidence and often depression. Each of which add to the daily challenges those of us with Usher syndrome already deal with.
I have had more disappointing and negative experiences than I care to mention. However, I have learnt from each and every one of them and have found my way of turning those negatives into positives for others on a similar journey to my own.
I am passionate about awareness, accessibility, assistive technology and inclusivity. I now work in these fields.
I will continue to speak out for my 'Usher Family' whenever and wherever I can. I do not want the next generation to feel the way I did when life really can be made so much easier with a little understanding.
My dream would be to have a completely accessible world. I believe with such amazing assistive technology coupled with awareness and understanding we could get there.
Awareness videos available on YouTube