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Tuesday, 30 June 2015 20:31

Just Imagine

Having Usher Syndrome means deafness with a progressive blindness and for some complete blindness.

None of us can possibly know if we will be unlucky enough to lose all sight, however it is a consideration.

I lost so much sight so quickly the thought of any further progression has been scary and something I choose not to think about it unless I have to.

At the beginning of the year I found myself in that position, through no fault of my own, where was I going with my life.

The profession I'd originally dreamt of was gone and now at 20 years old I needed to reconsider what I could do being deaf and already very blind.

Most would assume "Deafblind" what can she do?  Well, you'd be surprised at the things I can do!

I doubted myself a lot after diagnosis, always questioning the whys and how's.

The one thing that never changed was my parents determination to nurture and fight for me every step of the way even though they had to learn as we went.

We all need a chance to achieve what we can but how does that work when you are not given the tools to access what everybody else does?

I suffered a huge amount of discrimination through ignorance and it caused me so much distress and naturally I was "being silly or over dramatic", after all I was only going blind through my teens - "no big deal" accept it was a huge deal and terrifying - just imagine.

However, since I was 15 I have spoken publicly, initially to educate those around me of my support needs and over the past 5 years spoken in some amazing places about all sorts of things.

Life with Usher Syndrome is ever evolving, constant changes but luckily for me so too is technology.

There is always something to learn for me as much as everybody else, I just see things differently to others and how to adapt them because I have to and because I can and do.

I try to share positive and negative experiences and I'm delighted to see there is interest in my blogs and in Usher Syndrome and it's challenges from all around the world.

Also he world of technology who in many cases can hold the key to not just those with my condition accessing the world but for lots with disabilities and also the ageing population who can become isolated.

I know what it's like to feel different, to be bullied, to feel isolated, to have anxiety and depression, I know about denial, acceptance and counselling, I've experienced them all just because I have a condition that few understand, but, I understand and I use my bad experiences to advocate for others.

My path is definitely different, it's been made different through lack of accessibility, something else I'm passionate about.

I cannot highlight enough the difference technology makes to my life.

I'd just like those who need it most to be able to access it, it makes complete sense in every sense of the word.

Imagine being able to read, to write, to walk around safely, to join in, be an active part of society and then slowly these things are taken away as sight loss progresses but that you know of technology to enable you to continue with these things but you simply can't afford it - imagine that!

Tuesday, 02 June 2015 18:24

Smartly Aided

I feel incredibly humbled to have been offered to try a pair of the most up to date hearing aids now known as "Smart Aids".

I want to thank ReSound for their kindness and I'd like to give something back, not just to them but to the Usher Community of which I am just a small part.

To ReSound I want to share my experiences good and bad so that they can perhaps take into account my findings as somebody with Usher Syndrome and that they can continue to improve the technology available to people like me.

To others with Usher Syndrome I'd love to help fund these via The Molly Watt Trust but without serious fundraising or some very generous donors it can't happen, I will however keep plugging away to try and help.

What I can do is use my experiences to at least advise those with Usher exactly what is available by way of technology.

I've put together this piece about my initial meeting with two fantastic audiologist at ReSound UK's Head Office in Oxfordshire.

My blog about the Linx2 Smart Aids, their compatibility with my iPhone and Applewatch and how this technology enhances my life will follow.

I should make people aware of the type of blindness associated with Usher Syndrome is called Retinitus Pigmentosa (RP). The characteristics of RP usually start with night blindness, followed by a progressive loss of peripheral vision, so tunnel vision and what we see varies in different light conditions too and not just light to dark but from room to room, outside to inside in brightness and glare, environmental changes that just happen, yes, it is a nightmare! Of course I'm no expert on these things so the following is me talking about myself and just an outline for those reading my blog. Again everybody with the condition is different, I was very unlucky to have been registered blind or I should say registered Deafblind at just 14 years old and being already deaf it was the most distressing time of my life - that's possibly a blog for another time. Anyway, the loss of sight has to be one of the worst nightmares for somebody already deaf. Not only did I lose my sight within two years along with it went all the visual clues I relied on to hear, lipreading, facial gesture, body language - it felt like I was more deaf. The irony that I was often told "Molly you've got eyes in the back of your head" so observant was I! The level of concentration required to carry out everyday things is exhausting having Usher Syndrome and I can have days and days of migraine and sore eyes, but it's just become part of life. Back to what I wanted to blog about: Molly with Usher Syndrome / Deafblind I had to learn to use a cane, I hated it and by 16 years old I became a Guidedog owner. To get the independence I desperately wanted I had to learn to trust others, rely on others including my Guidedog Unis and technology, it did not come easy! That was then, now at 20 years old I have accepted that I need help but I like it to be as discreet as it can be and I feel lucky that there is good technology out there, often accessing it is the difficult part! I guess lots of you will remember my blog "My Apple Watch after 5 Days". For me it was a lot about, awareness, accessibility and independence. I therefore decided to leave the watch at home after 10 days and to carry out what would be a quiet day for me on a regular route that I would have no problems with Guidedog Unis. I found myself constantly looking at my wrist and strangely felt vulnerable as I immediately went back to holding my iPhone in my hand for fear of missing messages which I had gotten used to feeling on my wrist. The more I looked at my wrist the more anxious I became! Very strange. By the end of the day I had a terrible migraine and very sore eyes. It was then that I realised I had not had a full on migraine since I had been wearing my watch. Having thought about it a lot and of course going back to using my Apple Watch I believe the "no major migraine" had been since using the watch! Maybe it's coincidence, only time will tell. Funny I had thought the small screen of the Apple Watch, even though I chose the bigger of the two available, would have been a major issue for me, however because what I see is the equivalent of looking through a straw the screen is actually better for me than even that of my iPhone. I do not have to scan so much for information, glancing is actually easier on my eyes particularly as I have adjusted down the brightness, made the text bigger and use zoom. Surprisingly 10 days was all it took for me to become pretty reliant and attached to my Apple Watch. I'm very excited to have the opportunity to try ReSound Linx2 hearing aids from next week as they are said to be the first "Smart Hearing Aids" fully compatible for iPhone, iPad and Apple Watch. For those interested, I will blog about how I find the new hearing aids but it probably won't be for a few weeks as new hearing aids take some getting used to. Watch this space.

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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