Last summer I was asked to write a blog for the Usher Coalition for the first ever Usher Syndrome Awareness Day.
I thought long and hard and decided the best way was to use social media to show the world what this condition “looks” like, the irony of a hidden disability!
I am particularly proud of this awareness project as it highlighted lots of things and reached a huge audience, particularly on Twitter, I’m told it was trending at one stage.
I had realised the power of social media after one of my first ever blogs http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days which had interested so many people, I know because of the Applewatch but I am proud to say over 225,000 read that blog and all will have seen the words Usher Syndrome, deafblind and accessibility which really pleases me.
Social Media also has the power to bring otherwise isolated people together but only if they can access it which is why I am so passionate about accessibility,
As a result of my work and using social media, mainly Twitter as Facebook accessibility is not useful to me, I have met some quite amazing people.
I want to talk about one particular person who began following @mollywatttrust on Twitter around the time I set up the #ushlookslikethis project, his name @Fark09.
@Fark09 was very complimentary of my work raising awareness of Usher Syndrome in such a positive way and seemed to know more about me than he should, it really was quite mysterious.
As time went on it became more clear that the reason he seemed to know me so well was because he has a daughter with Usher Syndrome, she has a guide dog and is happily getting on with her life, a little older than me but just like me, refusing to let this condition ruin her life.
Soon after we found another connection, we are both very passionate about art and that we both express ourselves through art.
I was shocked that @Fark09 wanted to donate one of his beautiful pictures to me, for me to do with as I pleased.
We talked via social media for a few months and agreed we would meet when I was in the North West.
On Friday 23 October I went to meet the mysterious @Fark09 at his Stockport Studio with my Mum.
It was a very emotional meeting, his artwork is tactile and meaningful, a story behind every single picture which brings them to life.
The picture I was given has real meaning to me, titled “The Art of Communication” it is brightly coloured and although I cannot see it as a whole it is art that needs to be touched not only for its beautiful textures but for its hidden verse in braille “I wondered lonely as a cloud.”
I fell in love with this picture and as guilty as I felt at not wanting to donate it to my charity I had to keep it, Fark09 wanted me to have and to love the picture and I do.
Art is my passion and I can so relate to this beautiful tactile picture.
Usher Syndrome can make you feel ‘lonely as a cloud” it can make you feel painfully isolated, lead to anxiety and depression but we are not alone, even if we feel alone social media can take you away from that lonely place as long as you can access it.
Without technology I would not have had the ability to access very much at all, no sight, no sound and certainly no social media.
I would never have come in contact with @Fark09 had it not been for the work I do on social media and he is one of many amazing and supportive people I have met through Usher Syndrome and the internet.
I hope in the coming years everybody gets access to the internet, social media and that everything becomes accessible to those with disabilities, it really can be a lifeline..