A A A Accessibility A A A A
Monday, 22 August 2016 18:29

University: To Listen, to Learn, to Understand!

Written by  Molly Watt
Rate this item
(2 votes)

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’.

Read 9899 times

 


  

Donate

 

To support the work of MWT please click on any of the Donate buttons below or alternately you may send a cheque made payable to Molly Watt Trust and sent to Queen Anne House, 25-27 Broadway, Maidenhead,Berkshire, SL6 1LY.

All donations and support are gratefully received.

Please complete this form if applicable so that we may claim an additional 25% in gift aid.

 

 

Donations for the Molly Watt Trust help those with Usher Syndrome

Molly Watt Trust - Helpling those with Usher Syndrome

Paypal Donations to the Molly Watt Trust

 


 

 

Recent Blogs

My "Blind Date with Ushers

On Saturday 16 September 2017, Usher Syndrome Awareness Day,  I was very humbled to join in on an accessibility workshop hosted by Molly Watt from Molly Watt Trust and Chris...

Read more...

Applewatch, I won't leave home witho…

Hi Molly Watt Trust I want to thank you for funding my applewatch. I had so much catching up to do through the school summer holidays including  training with my new guide...

Read more...

September's Skydive/ Now November Sk…

Due to mechanical problems with the aircraft on Sunday 3 September 2017 we have had to re-arrange this fundraiser.  New date for this event iis Sunday 26 November 2017 We are...

Read more...

Maidenhead Charity Ball 2017

I was fortunate to be introduced to local couple Diane and Laurence Armstrong at a Christmas party in 2016. We quickly struck up conversation about both their's and my charity work. Diane...

Read more...

Applewatch, Cochlear Implant for Ush…

When I first got my applewatch from the molly watt trust I was really excited, being profoundly deaf and registered SSI with usher syndrome type 1.  I hoped the watch...

Read more...

Different, Unique, Priceless

Why don't people see the potential in different or in disabled? It is absolutely down to awareness, understanding and attitude in my opinion. As a little girl my parents made sure I...

Read more...

Emotion and Music to my Ears

I have had some additional personal challenges recently with the reality that my first trusty and gorgeous guide dog Unis is retiring early and that I will continue my journey...

Read more...

ReSound LiNX² to ReSound LiNX3D - En…

For the last two years I have raved about ReSound LiNX² smart hearing aids and rightly so, they literally changed my life. I would be lying if I didn't say "REALLY...

Read more...

Applewatch for kids

I recently received an email enquiry from the Mum of a 9 year old son living with Usher syndrome.   I regularly receive email from others living with the condition I’m...

Read more...

Usher Syndrome Children's Event - Se…

Since my young daughter was diagnosed with Usher syndrome 5 years ago I had never met another child or family living with Usher syndrome here in the UK. I'd been lucky enough...

Read more...

Is the NHS listening? Usher Syndrom…

We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since...

Read more...

The love of Unis

Unis came into my life when I was 16 years old.  Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of...

Read more...

A Visit to ATOS London Offices

I recently visited the ATOS London Offices, for an appointment set up by my Mum, Jane. We were there to meet with Dr McKillop to discuss varying issues and negative experiences...

Read more...

Mario's day to day life with Usher S…

My day to day life with Usher Syndrome (Retinitis Pigmentosa) is a constant fluctuation between moments where I can ‘get by’ and moments in which my disability presents real challenges...

Read more...

Disjointed Care or Digital Data?

I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services. It certainly got...

Read more...

Bali - Sound Sensations

At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali...

Read more...

Usher Syndrome / Christmas Challenge…

Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep...

Read more...

A toolkit to enable deafblind to acc…

San Francisco in November was an amazing experience, not just because I got to speak in Silicon Valley to some of the very top people in digital at Qcon I...

Read more...

Singapore Airlines - Never again

I blogged about my not just poor but disgraceful treatment by Singapore Airline cabin staff on 13 November during my flight, Heathrow to Singapore.  I very unpleasant start to travel...

Read more...

Singapore Airlines a Very Unpleasant…

13th November, the start of my adventure to the other side of the world.  It had been just two days since Mum and I had come off a plane from San...

Read more...

Deafness makes you more blind

My name is Colin Hetherington and I suffer with Usher Syndrome which is retinitis pigmentosa (blindness) which gives me all sorts of daily troubles from glare tonight blindness, headaches flashing...

Read more...

Facebook - Anti Social Media!

Dear Facebook I am a 22 year old who struggles with accessibility. I am registered deafblind, however, I was not born deafblind but deaf.  What that means, to you, is that I...

Read more...

iOS10 Accessibility

Dynamic text galore! As we all know Apple products, get fairly regular software updates.  I had read and heard a few things about iOS 10, but was intending on waiting to experience...

Read more...

My Trip to Parliament

My partner Lyn decided that we should head for the big smoke to celebrate my 50th Birthday.  We are both have guide dog owners and both love London. I used to...

Read more...

University: To Listen, to Learn, to …

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...

Read more...

I was hopeful but disappointed

My hopeful journey into the Wireless Bluetooth hearing aid world.   With Danalogic ifit cs71w hearing aids, Resound phone clip+ and a mini mic. I started off by asking my local NHS ...

Read more...

Being an Usher Mum

Being an Ushers Mum.  In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some tests.  I immediately had an in house...

Read more...

BA listened please listen more

After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed...

Read more...

Centre Stage Applewatch

AppleWatch and smart technology are brilliant for people with Usher Syndrome!  I have Usher Syndrome, which means I was born deaf and in the last ten years I have lost most...

Read more...

Unacceptable Audiology

I have Usher Syndrome, I am deafblind and my condition is degenerative. The fact that it gets worse and my abilities change all the time means that I have to make...

Read more...

Life is a Rollercoaster

As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years. A husband and four children comes with challenges but nothing out of the ordinary accept...

Read more...

Molly Addressing Accessibility with …

My outward journey to Las Vegas was nowhere near the way it should have been. The necessary call to ‘special assistance’ had been made by my mum prior to the trip...

Read more...

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...

Read more...

Applewatch for Award Winning Paracli…

Hi I am John Churcher and I have Usher syndrome type 2. I have always had a hearing loss and was diagnosed with retinitis pigmentosa at the age of 14...

Read more...

Safe and Secure with Accessible Ring…

About a month ago The Ring Video Doorbell was brought to my attention and I was asked if I'd like to try it. I love technology, particularly assistive and enabling technology. What...

Read more...

Global Accessibility Awareness Day 2…

Usher Syndrome for me means my whole world is accessed via accessible assistive technology. A year ago to the day I was fitted with Resound Linx2 hearing aids.  It has been...

Read more...

Learning from each other - 'In it To…

Walsall 2016 'Hear no. See no, Techno' Jo Milne, Colin Hetherington and Me. Once again we were blessed with a room full of people all on similar journeys.  With Usher Syndrome or RP...

Read more...

Ready to meet others with Usher Synd…

I decided I would like to meet some fellow ushers as never met anyone and my sight has been steadily getting worse . I had support worker for blind visit...

Read more...

Why Access to Social Media Matters

I have been asked many times what my favourite social media is and why and my answer is always Twitter. The reasons I like Twitter are firstly from an accessibility view...

Read more...

What is in a logo

We are often complimented on our logo. Molly designed the logo for our charity. Below she describes how and why she designed it. The first thing you will notice is the Molly Watt...

Read more...

Applewatch - Thank you Molly

My son read Molly's applewatch blog to me last year.  She made everything sound so easy and to be honest I didn't believe it. My son kept on and and and...

Read more...

San Francisco Adventure

San Francisco had been on my long list of places to visit and I was lucky enough to go on a girls only adventure with Mum and my younger sister...

Read more...

Effortless Applewatch One Month In

So I've now had my Watch a month and the best way I can describe it is 'Effortless.' When I first got it all in its beautiful packaging it felt like...

Read more...

When a Picture is more than a Pictur…

Taking a photo to me is not just a picture, its capturing a moment, capturing sight I no longer have.   I take a picture and then take it apart to...

Read more...

Applewatch Awesome but Hearing Aids …

I recently received an applewatch from The Molly Watt Trust, via their GlobalGiving project. I love gadgets. I have ushers syndrome type 3 which is gradually robbing me of both my...

Read more...

Applewatch Accessibility and Connect…

To quickly introduce myself, am Colin and I have Usher Syndrome type 3, the rarest of the Usher types.   I recently received a letter to collect a package from the...

Read more...

A Simple Tap or Touch can Mean so Mu…

Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person. My answer would be...

Read more...

Linx2, Earbuds, Earpods - Definitely…

I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses! I read the piece several times and still thought it strange.  I'm 21...

Read more...

Me, Myself & My Guide Dog x 3 - …

Recently I was invited to appear at the Sense Awards at Kings Cross London.  I had been nominated by friends and colleagues from the Usher Syndrome and RP Community, I have...

Read more...

Josh Dealing with Usher Syndrome Typ…

Josh’ Blog for The Molly Watt Trust Hi, I’m Josh. I’m 22 years old and I have Usher Syndrome type 3. I was born with normal hearing and vision, unlike most...

Read more...

The Jekyll & Hyde of Usher Syndr…

I had never heard of Usher Syndrome until I worked with a girl who has it.   If I’m honest I saw her come in and out with her guide dog...

Read more...

Can Deafblind Access Wayfindr?

An audible App or program for the blind, accessible to deafblind, using hearing aids? There was a time when accessing such a thing would have been impossible and in my lifetime...

Read more...

"Access to Tweet, Tweet to Acce…

I was delighted to see that at last Facebook allows dynamic text for those of us who use iOS and rely on it. Finally those who had been isolated from family...

Read more...

A "Resounding" Success

When I wrote my Applewatch blog back in April this year, I had no idea of the interest it would generate, nor the amazing people or companies it would lead...

Read more...

Please, Please, Please Consider All …

I was prompted to write a blog on reading this quote:  “For people without disabilities,technology makes life easier.  For people with disabilities technology makes things possible” (IBM training manual 1991). That quote...

Read more...

Edinburgh Social Event 3 October 201…

Best Western Kings Manor Hotel, Edinburgh Saturday 3 October 2015 was a great success. It was brilliant to see old and new faces and a time to share some news and...

Read more...

Usher Syndrome - The Importance of A…

I have now realised after many years that always trying to fight Usher Syndrome certainly does not work. I don't know if it's a pride thing or that I am just...

Read more...

Usher Syndrome Awareness

Usher Awareness Day Sept 19th 2015 Dominique Sturz, Usher Forum Austria My name is Dominique and I am the mother of a 19 year old daughter with Usher Syndrome, she is a...

Read more...

Trials and Tribulations of an Usher …

As some of you may know, Jake our sixteen year old son was diagnosed with Ushers Type 2a 3 years ago, at the time Trev and I thought our world...

Read more...

I can no longer hear with my eyes - …

I was recently talking about cochlear implant and was told the reason those of ANY age with Usher Syndrome (deafblind) that are profoundly deaf and wanting cochlear implant and who...

Read more...

 


 

 

Bradley Timepiece - Usher friendly timepiece - Molly Watt Trust

©2017 molly watt trust, registered UK charity 1154853