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Friday, 10 January 2020 15:10

A Decade of Progress

Well it’s the year of 2020 everyone! 

It certainly has been a time of reflection for me, as a result I wanted to share my last decade in a blog that might provide hope for those living with progressive conditions such as mine.  As hard as it can feel there is a future, it will be challenging but hard work and determination can see you through.

I have always hated New Years, I’m that emotional sobber in the corner as midnight strikes!
For me the concept of time is quite terrifying, to be frank I have always tried hard to not look too far forward nor back!  However it’s this time of year where you’re forced to think about these things. 

And then there’s the people talking about the past DECADE as we walk into the next.. well my mind has been having an inevitable real field day thinking about all those years...

10 years ago, I was 15, had been registered blind a year and it was not long before I was put on the waiting list for a Guidedog. I was at boarding school, where I was tormented for being different - I couldn’t sign British Sign Language, so therefore I was “a sad excuse of a deaf person,” I didn’t look blind so therefore I was “pretending,” I had both pupils and teachers grind me further into the ground daily. All I wanted was to be like everyone else, to have no worries besides my GCSEs - not the worry of not being able to actually see enough to read them let alone sit the exams and pass. 

At 15 I was put on extremely strong medication to try and rectify a secondary eye condition (Cystoid Macular Oedema,) in the past decade I was on these twice for between 6-8 months. Both times I went from an average size 8/10 to a size 4/6. My mental distress was at the brink and I’d spend most nights crying in pain. The medication never worked. I even had injections and eye drops to try and save my failing central vision - none of which worked. All this while I was at a school who to be quite honest, didn’t want me there. 
I had 5 degrees vision left. (Thankfully it’s been stable since.) 

Fast forward a few years, I lost friends I gained friends I found the college who restored my faith in humanity... I found *Molly* again. I have Strode college in Egham Surrey to thank for that.  I’ll always be eternally grateful for the teachers, the support and of course the life long friends I made there. 
Leaving college I proved the little doubtful molly I had inside me that I WAS worthy of succeeding, I even got into university. Sadly university wasn’t to be even after my tireless battle with the authorities to gain the support I absolutely deserved. 

At 20 I got a job at Apple where I worked as a specialist and these guys, I’ll always thank for seeing my true value. I found my niche - technology! The ever impactful tech that had gotten me that far and I hadn’t actively realised it until then. 
My confidence built up and I built a field of contacts, I bought my first applewatch and wrote a blog that went viral and literally changed my life.

 After the applewatch blog I made contact with GN Hearing who's smart hearing aid technology would go on to enhance my life.  GN produced the first hearing aids completely compatible with applewatch and iphone meaning I had the a pretty enabling awesome accessibility toolkit.  My confidence was high and as a reult I left apple to persue a self employed journey in accessibility, web and app design and usability.

My first dear Guidedog Unis who had come into my life when I was 16 years old was forced to retire early, saying goodbye was to date one of the hardest things I’ve had to do.  Thankfully her forever home is with a good family friend and she is now loving a happy retirement.

 
My second guidedog the beuatiful little Bella aka Welly trotted into my life and has been instrumental in my life since. Thanks to that poppet, I can earn a living and do so safely and with genuine happiness having my little best friend by my side at all times. 

I have been able to work with massive companies like Apple (HQ,) LinkedIn, NHS Digital, Spotify, ASOS - the list goes on.

I started working with the amazing guys at Sigma - they too, have been amazing in contributing to my growth in independence, knowledge and confidence. 
I have travelled the world, travelled europe delivering keynote presentations and meeting amazing people. Making memories ?

And here I am, I am the person I’ve grown into today and well, I'm pretty proud of myself. 

Though things as always remain challenging, the past couple of years have been steady upward progress for me.
In 2019 I proved to myself that I could get even *better,* and with my Molly Watt Talks journey have done incredibly well - if I may say so myself! Also as a person, I’ve grown so so much. 

I won’t finish saying it’s all been perfect - it’s been awfully hard at times, I still battle with my mental health and spend some days in bed crying at the thought of leaving my house. 

That’s life though, and never be afraid to sit a day out here and there - it’s not easy being human, learn to give yourself a break and to not feel bad. One thing I learned just in the past year. 

My wish list for this next year/decade is to grow, to advocate for others, to travel, to work and meet more awsome people, buy my own home and to see others living with my Usher Syndrome thrive.

So before I sign off I want to thank YOU all for still being here - I see you! Not literally obviously, I am blind (heh) you’re so very appreciated.

May we all continue to grow, and learn. Here’s to the next 10 years...

Do you have a year plan, a ten year plan or a wish list?  If you do please consider sharing, write us a blog we can share and lets make these things happen.

 

 

 

 

Where does our story begin..... Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses) they picked up an issue all we were told is she had black spots in her retina it was nothing to worry about!! That she would be refered to the hospital.

On returning home I did what most of us do and used good old Google my heart sank I had a panic attack and didnt know who to turn to.

Fast forward to February after local appointments we had an appointment at Gosh where we were told Alice had rp and combined with her hearing impairment she has Usher1 syndrome (I knew as I had already been doing alot of research) just needed the formal diagnosis. Alice was registered sight impaired on that day and many appointments were booked. It was then on speaking with Paula the eclo we first heard of Molly Watt. On the train home both me and Alice watched videos and read articals by Molly it's then that we reached out. From day one Molly and Jane have been amazing.

Jane (Molly's Mum) has been a huge help to me as a mother who is that bit further ahead of Alice and I on the usher journey. The information she has given me has been invaluable to getting where I am today.

The Usher Road for us has been a very rocky one. School was awful they couldn't or wouldn't except Alice had issues because she used he residual vision so well despite 6 months after diagnoses being registered severely sight impaired. They even refused to allow her to use her cane in school!!! Jane guided me through many a minefield and eventually Alice got the support needed. As a result of her guidance pointing me in the right direction and letting me chew her ear off as well a many sleepless nights on my part fighting the local authority trubunal Alice now has a place at The Royal National College for the Blind.

Alice has a special bond with Molly and really looks up to her she is an amazing role model and advocate for Usher. We both follow one of the first things Molly said to us when we met her..... Focus on the can dos and not the can't dos. As a result Alice did complete her gcses including art. Also as a result of meeting Molly and Jane we now have so many new rp/usher friends (family) who I am now able to be there for if needed.

Molly and Jane thank you for the last 2.5 years helping both me and Alice learn and understand that anything is possible being deaf/blind having Ushers........ Exciting things are awaiting Alice now ❤️ #ushfam #rpfam #deaf/blind #inittogether

I have been asked over and over why I didn't complete my initial dream to be a primary school teacher and for some time it was a sore subject, however, today I can say once again that things do happen for a reason.

My education was anything but easy after my Usher Syndrome diagnosis, even those who professed to know about the condition proved only that they had heard of it, based on the support I got!

I had a few shining stars through my senior education (14yrs - 16yrs) one was the lovely lady from Sense, sadly I did not see her after moving to college.

Then at the college I went to Strodes College in Egham, Surrey had the most amazing staff and a SENCO (special educational needs co-ordinator) Nick, a man I will always be very grateful to.

Nick was fantastic for lots of reasons but in the main he was very honest and had a great attitude.

On meeting him he told me he had no experience of Usher Syndrome, not even heard of it.  Not only that Strodes had not supported anybody with significant hearing loss or blindness and they had certainly never had student with a guide dog, however, having seen my academic ability based on my GCSE results he offered me a place and then began considering the support I would need.

Nick found me a personal assistant who would modify materials for me, liaise with my teachers and the area support worker, email me anything I needed ahead of lessons so I could access easily on my macbook and be fully prepared for everything coming up.  All sounds easy - it was, the team around me were totally professional, completely organised and they made my access to learning fully accessible and to them it was no big deal, I did not feel awkward or a burden like I had been made to feel at the previous school!  

They made it that easy that guess what?  Not only did I get fantastic A level results and got into what at that time, I was told one of the top three universities in the UK for primary education but I got my confidence back, I made new friends who saw me simply as Molly and they just accepted me the way I am.  Those college days were some of the best days ever.

Sadly once again the rollercoaster of my life was to hit another major low and this time at university.

I felt so proud of myself having made it not just to university but to this particular university who offered me a place the same day as my interview, I was elated, sadly it was all to end very badly.

In March of 2014 the university offered me a place, subject to A level results which I felt fairly confident about thanks to my support at Strodes and also the mandatory ‘Skills Test” an online test that I could not access, yes, a Government website inaccessible, that was my biggest concern!  

Once again I had to rely on my Mum making telephone contact to advise I could not access the tests,! as back then I could not use a telephone!

Thankfully between my Mum and Nick at Strodes College an alternate test was set up for me and executed by the College, totally unacceptable but hey, we did it and my exam results confirmed my place.

Teachers inspire the next generation, I was and remain very capable of that, however, my feeling this confidence was to be crushed once again.

Before arriving at the university it was arranged for my lecturers to attend a pre start meeting to discuss me, my support requirements and guide dog Unis - I’m told nobody turned up!

I was so excited to be starting university, I was following both of my older brothers and I felt incredibly proud, especially after all I had endured especially in the hideous school I went to between 14 and 16.  I had nothing to prove to anybody accept myself.

I had amazing flatmates who on day one I sat down and did the whole ‘this is what Usher Syndrome is” was as simple as that and they were fantastic, goes without saying Unis was a favourite from the beginning.

Sadly the university staff were far from understanding or considerate let alone organised.  Most would comment on how gorgeous Unis was then didn't consider me any further.

It was clear there was no consideration for me or the other deaf girl on my course, lecturers would continually speak with their backs to us and even though I have little vision I had learnt as a deaf child to always sit towards the front to give myself the best chance of lipreading, reading body language and gestures and basically fill in the gaps, nothing new for deaf people, just a part of the coping strategy learnt from very young. 

Over and above the “back facing me” bad practice there was often the use of look ‘here and there’ when referring to slides, what that means to somebody blind is ‘WHERE?’ not a clue.  

It was so clear none of the lecturers using these methods had attended the awareness class set up for them.

On top of that bad practice lecture after lecture came and guess what?  No reading material often followed by its on the Moodle (university intranet) another of those wonderful websites I couldn't access, simply couldn't enlarge the content so snookered from the beginning and it didn't matter how many times the various staff members were told nothing changed.  The best response was ‘we will allow you more time for your assignments Molly’  not at all useful for me.  Besides the fact I get totally exhausted just being me having a build up of work and being behind played havoc with my anxiety - nobody was listening.

My MSI (multi sensory support) worker did her best but I don't think she was listened to either.

Visit after visit to the disability co-ordinator did not resolve anything in fact the first one was replaced by a man with a guide dog, blind but not deafblind and my only memory of him is nothing to do with my course or support but that his guide dog and Unis had some sort of confrontation and she was never the same thereafter!

I coped up until the half term (late October) with the support of my flatmates and new friends I had made.  I really enjoyed the independence of living away from home with Unis and the social life that I was completely involved in, again thanks to my friends but the very reason I was there was not working and I Knew people were not listening.

After a week at home and some long conversations and soul searching I decided I would need to take things further as without a doubt I was behind and still very little reading material and several assignments not complete.

It had been part of the agreed support that all reading material would be provided ahead of lectures, that it would be modified to my personal requirement, that i could then read it ahead of a lecture meaning I could then sit and completely concentrate on each lecture - listening and concentrating with Usher Syndrome is enough of a task without having to try to listen, follow a lecturer and read, far too unreasonable to even assume it possible.

Pretty early on my return to university I was told my first school placement would be in a nursery, I was horrified, not that I don't like little children but from a safety point of view little children are small and new to school and school rules so often a little unpredictable and having just 5 degrees of vision I wanted to avoid any possible accident.  I voiced my concerns and also my desire to work with children of junior school age (7-8 upwards) for the reasons I have stated - fair comment I thought.  I was told if I didn't accept the placement I might not get offered another, as if I should feel lucky followed by the flippant comment ‘how do you think you can be a teacher if you can’t work with little children?’  I don’t know how I didn’t cry that day, I felt totally crushed.

Instead of complaining I spoke to my ‘MSI’ and agreed to visit the school, sadly it was with the same university assistant who had decided I was incapable.

The journey was awkward and on arrival at the school it was even worse.

The rules were:

Unis would not be allowed in the classroom, she would need to be in an allocated room along the corridor (I would have to find my own way)

The children would always come first (obviously).  

There would be 30 minutes for lunch, that would include me attending to Unis. (No parks were within 5 minute walk radius.)

When I did outdoor gross-motor activities with the children (LOTS of this in nursery) Unis would not be with me, but in her 'room'

The last one, my favourite, NOT:

In the event of a fire the children would come first, again, 

obviously - If Unis was indoors in the specified room and I was outside with the children and the fire alarm was to sound I would not be allowed back in the building to get Unis for safety reasons. My automatic response was that I would give anybody inside 

permission to take her lead and escort her out! The response: ‘We couldn't guarantee that, the children are our priority.'

Whilst of course children are always a school's priority, they had set 

unacceptable rules, firstly distancing me from my guide dog, my mobility aid and secondly had not considered my need or her worth in any shape or form.

I have Unis for a reason, it is not for others to set unacceptable rules but to consider us as a valuable package and a package that would add value to any working environment.

Just ask the Headmaster at Oldfield Primary School, Unis and I 

volunteered there for six months, she was a very treasured member of the team and they were sad to see is go.

Not once did the university speak up for me.  Not one of the ‘rules’ were acceptable and clearly nobody had had the hindsight to contact guide dogs for the blind to ask what is and what isn’t acceptable. My safety was never considered in the workplace, nor was it ever questioned.

I was devastated to the point I felt not just bullied but discriminated against.  The drive back to the university was in silence.

I went home that night my confidence in bits.

Nobody knows me like I do and I would have made a fantastic teacher, a teacher who understands disability, who has a creative mind and a determination to make a difference, however it was not to be.

I visited my GP who was furious about my treatment and wrote a letter of concern to the university and I put in a formal complaint.

I could tell you so much more about how badly I was treated but its going backwards and I am one only capable of looking forward, especially was my level of blindness!

My last visit to the university for a meeting to ‘resolve’ things was the day I knew it was all over.  The long meeting just highlighted how inept they were, lots of empty promises lots of stupid excuses for not being organised and really a complete failure to understand me or my condition.  Nobody had listened at all.

They offered me a few choices but my confidence with them all was gone and there was no way I could have coped with years of their incompetence to support me.

I left for my own sanity.

My Mum furious at my treatment pursued them and all fees were returned, ‘lessons have been learnt they said’ and I had hoped if nothing else, nobody else would be treated the way I was!

Sadly I now know of two other students on my course, my friend who was deaf and another with various other challenges who have both since left, not being able to complete the course through lack of support and it is this what has led to this blog.

Leaving university was the right decision for me.  

I didn't feel a failure, I felt angry and let down but not defeated, I absolutely refuse to be defeated.

I had my charity Molly Watt Trust and various speaking engagements to keep me busy and by then I knew my path was just made to be different.

My skill set are not ones you can study for.  Today I am an educator, not in a school but in the fields I am passionate about, the things that educate and enable - awareness of need and assistive technology, both of which should lead to inclusivity.

These days I use my negative experiences to find positives.  

I advocate for others who feel less able to communicate their needs.

I call on my own strengths as a young deafblind person and use them to enable others.

I want an inclusive world, I don't want others to struggle or suffer the way I did because the treatment I endured was not necessary.  

Strangely as well as my family and few close friends I can now thank the very people who made my life a living hell for making me the person I am today - ‘Determined to make a Difference’.

Sunday, 22 May 2016 18:50

Usher to Usher

I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm 23, I'm from Staffordshire but currently living in Newcastle upon Tyne and like you, I have Usher's Syndrome. 

I was born profoundly deaf, I had the cochlear implant at around age 3/4 and at aged 11 I started to lose my sight. The realisation of my Retinitis Pigmentosa was pretty traumatic, I had woken up in the night, blind, frantically searching for the light switch. After this had happened a couple of times my parents decided to take me to get my eyes tested. It was then that they had diagnosed me with night blindness and shortly after, Retinitis Pigmentosa. My sight continued to deteriorate throughout my early teens, until I was around 15/16 when the deterioration stabilised, leaving me with tunnel vision and they discharged me. They also finally diagnosed me with Usher's Syndrome. Going through the troublesome teenage years I guess I chose to ignore it, push it to one side as I desperately wanted to lead a normal life. 

I finished my GCSEs, I did my A levels, I successfully completed a foundation diploma in art and design as like you, I am a very visual and creative person. I then left my small village and moved four hours up north to the bustling city of Newcastle upon Tyne to study at Northumbria University.

I was on the right track of leading a "normal" life and being a "normal" person. It was moving to university that made me realise that actually, life is different for me, life is harder. I realised my capabilities and my limitations, I struggled with it to say the least. Once again, I tried to ignore it but slowly I realised that I couldn't any longer and that I needed to be aware of my condition as well as others and that it was okay that I needed help. Slowly I started to tell my friends at university about my "challenges", and slowly I started to build my self confidence up. Since then, I have been researching Usher's Syndrome and RP, I even based one of my final projects at university on my condition where I created a publication called, "Tunnel", which consisted of imagery and short stories about my experience of having RP. I graduated from university last summer, obtaining a BA(Hons) in Fashion Communication which is one of my proudest achievements to date.

Every now and again I still struggle with the uncertainty of my future and after reading blogs like yours I realised that I need to stop suffering in silence and contact others with Usher's. I am currently going through the process of rebuilding my project that I created at university (Tunnel) by starting my own blog about my journey, focusing on improving my RP symptoms through changing my diet and lifestyle. I am also researching ways that I can get involved to help raise awareness.

Ultimately, I just wanted to say hi, to let you know that you have inspired me and to thank you. 

 

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