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’.
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.