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Friday, 19 February 2016 14:59

The future will be bright if the future is Accessible!

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I didn't like to think too far ahead, however I was determined to make something of my life.

Thanks to amazing support at Primary School and later at College I made it through my A levels and to University.

Sadly University turned out to be very similar to senior school - something of a non event, big promises of support but failure to follow through.

Again let down by a system that failed in their duty of care, failed to provide accessibility or inclusion and enough really is enough.

Enough fighting, of feeling anxious, misunderstood, unimportant time to move on and do something different.

I spent two months soul searching could I physically and mentally deal with another two and a half years of fighting for support, fighting to be given access to a course I had for the first three months been denied.

This time my GP was to have a major part in my decision, he had seen what appalling treatment at senior school had done to me and he did not feel I should have to deal with anymore anxiety brought on by a society that should know better.

I felt better for that decision and also I felt relief that I had an option, something I enjoy, something I have been doing for years.

The irony that many years before I became a Keynote Speaker because of Usher Syndrome, the continuous ignorance, lack of understanding surrounding the condition meant rarely did I get the support I should have and it seemed the same for everybody living with this type of deafblindness.

Time to move on and find my individual niche.  

This past year I have spent my time working part time in retail, blogging, speaking and consulting about accessibility.

 I no longer have to rely on a system that simply doesn't understand the challenges of people like myself.  

The general inability to understand, yes I do look ‘normal’ and I am fairly ordinary accept I have very specific accessibility needs.  I am deaf but I speak, I make good use of hearing aid technology and I’m also registered blind making me deafblind.

I am tired of the constant fight for support, I have no idea how my parents battled for me for so many years, it is wearing and it really is time things were easier for the coming generations of people living with hidden disabilities like Usher Syndrome.

I set about making my mark in 2015.  

My first children’s book, Frog, Froggy and Froggy was published in December 2014.  A simple story about the importance of inclusion and anti bullying 

Starting at the end of January with a fantastic keynote presentation to a group of Company Directors in Hinckley Leicestershire which led to a second presentation for a sister company in March.

I visited several local schools talking about my book and spending time with children with SEN which was very fulfilling for them and for me.  I am very keen that young children realise that being different is both okay and acceptable a message I am portraying in both my first and second children’s books.

February 2015 I am was invited to two schools in Devon and to meet with a family in Dorset to talk about all sorts of things including living with deafblindness and my aspirations going forward.

I particularly enjoyed spending time with a very special little girl in Exeter who was special in lots of ways and she took a little of my heart with her.  I was lucky to meet with her loving and supportive parents and to take assembly in her school, a mainstream school who were doing a great job, long may it continue.

In March I spoke in Bath to another amazing group of Company Directors.  This presentation was one of my favourites as it was a joint one with my Mum, who is known to talk a lot but is not a keen speaker in public, she was awesome and so too was the audience.  

I met some amazingly influential people that day, many of who have been very supportive of me.

By April I was beginning to really enjoy myself.  

A few more local school presentations and something that was to change my life.

The day Applewatch came I out I was presenting to an awesome Company in East London.  

My presentation here was fun, a young group of really inspiring people all very interested in my take on accessibility and assistive technology, two of my passions.

At the end of April 2015 I put together my Applewatch Blog 

The reaction to my bog blew me away.  It had been intended for the Usher Syndrome community as I set out details of it’s accessibility.

The world was interested and whilst I’m sure the big interest was because it was ‘Apple’s Watch’ over a quarter of a million people read that blog and the words ‘Usher Syndrome” and “accessibility” were referred to so lots of awareness from one blog.

At the beginning of May I worked with the BBC's See Hear Team and was filmed for a piece abour Usher Syndrome and the deaf and shown in the Uk to mark Deafblind Awareness Week in June.

Mid May I was wearing my Sense Ambassador Hat, a job I take very seriously and spoke about Usher Syndrome Awareness at The Badminton Horse Trials.

May was also the month I met with ReSound and was fitted with my Linx2 hearing aids which have enabled me to access sound in a very new way.

June saw me at the London Offices of JustGiving where I gave a short presentation to a young team and where I got to speak about website accessibility.  Fantastic that so many companies are interested in fully accessible websites.

I was invited to another school, this time in Manchester.  It was one of my proudest moments as I was introduced as an “Author and Illustrator”.

Although I am, I had never really considered myself that way and it felt good.

Feeling good I did my first challenge for my charity The Molly Watt Trust in June as it was ‘Deafblind Awareness Week’.  I had by now decided what I wanted the Charity to fundraise for.

I was invited to do a presentation on accessibility at Facebook's London Offices in July, however I was fully booked with school presentations and speaking to local businesses, each time raising awareness of hidden disability, the importance of inclusion and accessibility for all.

In August I reached 21 years old and realised I have so much work to do and I want to get on and make a difference if I can.

I was invited to speak in Boston US in September on what was to be the first ever Usher Syndrome Awareness Day.

I set up a twitter awareness campaign #ushlookslikethis which I was delighted to see did trend for a while.

I spoke to the Boston Accessibility Group about Usher Syndrome, about my Applewatch blog and about general accessibility.  There I met some very inspiring characters.

By October I had been invited to be a part of a ReSound Roadshow, six separate presentations throughout the UK and Dublin.  I was able to speak in front of audiologists and hearing aid dispensers about Usher Syndrome awareness and accessibility - this invitation was a fantastic opportunity for me to be in front of an audience who can make a difference to people like myself.

I was invited to speak at https://www.manchesterdigital.com/events/camp-digital-2016 something I'm very much looking forward to.

At the end of October I had finally, with a little help, worked out how to set up a project with GlobalGiving https://www.globalgiving.org/projects/deafblind-need-access-to-life-enhancing-technology/ something I believe passionately about ‘Enabling Others’. 

The ReSound Roadshow continued into November and kept me very busy, it was enjoyable and very informative and I hope to work alongside ReSound again.

After the roadshow I was invited to a school in Kent where I took an assembly and then spent time with some SEN children, a fantastic day. 

November came my invite to be a Keynote Speaker in Perth Australia http://www.deafblind2016.com.au/key-note-speakers.

My last presentation of 2015 was a special day at a Bradford School where I took assembly, speaking about inclusion, anti bullying, accessibility and technology.  Then spending time with the children proudly opened the New School Library 

Most of the schools I visited last year have gone on to raise money for The Molly Watt Trust and to sell my books, proceeds from the books go to MWT.

All monies that go to The Molly Watt Trust go to Usher Projects as detailed at www.molly-watt-trust.org 

Did I make the right decision in leaving University?  

The obstacles that stacked up against me at University are gone.

Without a doubt, I no longer have to feel anxious about support for everything I do, I have independence.

My diary for 2016 is growing and my determination to make a difference is too.

I am passionate about inclusivity, inclusive technology and accessibility for all.

I am available for Keynote Speaking for more details  

 

 

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