A A A Accessibility A A A A

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’.

Wednesday, 17 September 2014 01:00

University and Me

Sunday 14th September 2014, is a day I will never forget.
I'd always describe myself as too sensitive, and this day proved it on every level.
Moving from home, the place I'd lived all my life, in a small town with my parents and brothers and sister.
Even when puberty came, when friends grew out of playing with dolls and started walking to school on their own, even when my baby sister had gotten older and was out nearly every night after school, busy shopping, going to cinema or painting friend's toenails, I was at home with my best friend, my Mum. A real homely person, more so than most with my failing senses.
Having been away from home once, the less I say about that the better accept it scarred me for life.
How was I going to cope this time round?
Time has gone on, I have gotten older, wiser and lets just say, I've gained a lot of life experience. Despite being manically depressed and severely anxious I always did have dreams. Even the darkest days where I couldn't see my road ahead, and I didn't want to even try anymore; the easier option just seemed far too easy... I always wanted to succeed, live a happy lifestyle, independently. I always wanted to make a difference.

University was the next big thing coming for a long time. 'I'm ready,' I heard myself tell a lot of people. Little voices or deep thoughts still kept coming into my mind questioning e.v.e.r.y.t.h.i.n.g, but I just know I have always had the inner strength, mainly from the support from family and true friends, that I was going to university to learn a trade, have a profession, a profession I have wanted for a time. A profession I have chosen based on the best and happiest days of my life, the time before blindness became an issue in my life, before Usher Syndrome had reared it's ugly head.
I will be a primary school teacher.
I will get my degree and I will inspire young ones through teaching.

My stomach hasn't been settled for at least a couple of weeks before this day, food didn't taste the same, and my palms were sweaty constantly. 'What if?' 'Can I cope?' 'I CANNOT COOK' 'How will I tell people?' 'Will people be as accepting as they should?' 'Will I be able to enjoy this degree like everybody else?' 'Can I really do this?' 'Will they doubt me?'

The last few years have taught me that in life the vilest creatures do exist however, that there are the kindest most thoughtful, open-minded people around too. I have lost and gained faith in humanity, too many times to count. What was university going to consist of? Bullies? A short man with a ginger beard pointing fingers in my face telling me I don't belong?
Or people who would listen, accept me as I am, and help show me the way?
What is it going to be?

Either way, I can't change my mind now, I've battled through A levels, Skills tests and extreme stress levels to get this place and accommodation, the choice has already been made. There is no going back.

The tears never stopped, the lump in my throat was permanently disallowing me to speak. 'You're onto much better things,' I heard my Mum say in my ear whilst squeezing me tight. The tears were simple unlimited that day. Goodbyes were painful, every hug I gave/got I found myself burying into them with my tear stained and red face, not wanting to let go. 'Am I really ready for this?'

'This is it Unis, its me and you now.'

Unpacking and putting my personal belongings into my new room unleashed so many memories.
I remember doing this before. I cried as soon as my parents left, and here I was, crying. De ja Vu.
'It won't be the same Molly' I kept telling myself.

Having met the flat reps, who were the most warm people I could have met, I felt millions better. I immediately flashed my wicked sense of humour, and flooded out my life story. The relief I felt having told people the score, their reactions were so genuine.
My flat consists of (including me,) 3 girls and 3 boys. And everyone took me as I was and didn't question. The blatant curiosity on their faces was saved by my open personality. 'I am basically a bundle of dodgy genes!' Growing up with an optimistic family, I have always dealt with difficulties by having a sense of humour and having a laugh.

The first night, we went on over to the bar/diner on campus where we had to attend a talk in a room that was dim lit. Due to me misunderstanding what the event was, I had Unis back at the flat with a chew to save her from witnessing my immense alcohol consumption.

I immediately grabbed the girls' arms and reported to the girls that my eyes were struggling in the light changes; they were thrilled to be of help.
Freshers' week was beginning and there I was at the bar getting my first drink, 'This'll calm the nerves,' I think as I necked my vodka and lemonade. Having relocated myself to the bar, I turned around and realised I was on my own. I stood where I was for an awkward few seconds, swigging my drink through a straw. One of the guys from the flat came and patted me on the shoulder, 'It's George, are you okay?' 'Just say if you need a hand!'

Well this couldn't get better, my flat mates have fully embraced my condition, me at my worse, and me at my best. They have fully accepted I have good days, bad days and of course the beautiful Unis is a big part of me too. 'Cannot wait for my Unis cuddles later,' they all said within hours of meeting us.

2nd night of freshers' I was more apprehensive about.
More of a club theme on-campus that consisted of LOTS of UV paint, EVERYWHERE. 'I hope they don't forget me.'
So the lighting was terrible and not Usher-friendly, however again my flat mates 'striked' again with their brilliant discreet but great support, hanging onto me and telling me where steps were. Besides, UV paint glows in the dark, definitely came in handy in terms of determining where people's bodies were in the dark!

So far so good, but I'm tired, so tired, Usher does that, another of my daily challenges, hey oh, as mum would say "Onwards and Upwards" :) MJW

 

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