This week is deafblind awareness week, so we invited Usher Syndrome sufferer Molly Watt to guest post today. We come into contact with those who have poor eyesite every day, but how many of us really know what it is like to be losing our vision? And what if you couple that with a loss of hearing too? Molly’s positivity and zest for life should be an inspiration to us all.
I am Molly, I am 19 and Usher is just a part of me
Probably the best way to describe my journey through usher would be frustrating but determined.
Most of the things that have happened in my life are as a result of my frustrations that so few understand the challenges of usher syndrome, the continuous questioning of my needs because I look “normal!”
The lack of awareness of my condition has caused me major downs and led to depression, however, the main ups have been having a strong family to battle through the many problems and my resolve to get awareness out there.
It all started when I was 14 years old, having been born deaf I knew nothing else but wearing hearing aids and was doing well, however, I was diagnosed with usher syndrome at 12, meaning not only was I deaf I now had a progressive eye condition called retinitis pigmentosa, I was then registered blind at 14, my life changed beyond belief.
I’d had to leave my friends who’d always been part of my support system and go to another school as they understood the condition!
One can definitely know the basics of the condition but it is unique to each affected person and therefore each individual should be treated individually, just like everybody else on the planet.
This is where I began to express myself through my creativity. So frustrated was I that those that apparently understood the condition did not, in answer to the inadequate support I made videos to show how I was feeling, what I needed by way of support, I also realised that I felt better for getting word out there, having my say.
The videos were very well received and not only are they now used in training and informing newly diagnosed ushers and their parents of some of the challenges ahead, particularly in schools. I was also nominated and won Sense’s Young Deafblind Person of the Year 2010, It was a very proud time for me and made me realise how much awareness and support are key to success for people with usher syndrome.
We are not deaf with blind or blind with deaf we are deaf, blind and deafblind it is quite different and real understanding is essential.
I realised my creativity is my strength. I began expressing myself through my art, a lot of my artwork expresses my condition in one way or another, indeed there is a collection of four pictures known as “Usher Eyes” which demonstrate my take on my blindness, there is now a set of this collection on display at Moorfield Eye Hospital in London, something I am very proud of and hopefully the collection might appear in other hospitals too. They are available to buy.
As a result of my videos I began to be invited to speak about my challenges at which time I realised I was helping others both with the condition or living with the condition to understand, something that makes me feel good.
College has been fantastic for me, they didn’t know anything about my condition but they were happy to work with me and my support team and learn, attitude is absolutely everything and the desire to go that extra mile.
I have gone from strength to strength at College studying English Lit/Lang and Art and Design, my support has been excellent and this really is key to achieving great things.
I want the sort of support I’ve had at Primary School and College for all as it works.
Usher Syndrome is not a death sentence but is incredibly challenging, without awareness and appropriate support it is easy to fall into depression and despair, I’ve been there and it is avoidable.
My strength has come from my parents, particularly my mum and my desire to help others with my gift of communication and understanding of my own condition allows me to help others by public speaking and raising awareness of this often mis-understood condition.
I want those struggling with acceptance and dreading the future as deafblind individuals to realise life will change but it is doable, frustrating often but with help and determination it will be okay.
As I write I am nearing my A levels exams, I have two university offers for primary education, I am severely deaf, severely sight impaired (blind) and I have Uni by beautiful guidedog who I have had since I was 16 years old and with the right support I will teach children in the coming years.
I will continue to do public speaking whenever invited, raise awareness of Usher Syndrome and fundraise to support people with the condition because we can do amazing things…
I was delighted and flattered to be asked to be an Ambassador for Sense, I see it as not just a fancy title but a way to work with and alongside the charity in raising awareness of usher syndrome.
My keywords for living with usher syndrome would be support, determination, belief, desire, accessibility, technology and possibly the hardest speak up and tell your parents, teachers, support team what you need because it is only you who knows exactly what works for you.