A A A Accessibility A A A A
Monday, 23 June 2014 00:00

House of Commons Presentation – 23 June 2014

Written by 
Rate this item
(3 votes)

I was invited to speak at The House of Commons as a result of my previous work raising awareness of Usher Syndrome the condition that first took away my hearing followed by my sight.
I should say that whilst I am not a big fan of Usher Syndrome I have learnt it's best to work with it rather than fight it or hide away from it.
Once I took charge I am in charge of what I can and cannot do.
Usher is just a part of me and does not define the person I have become, first and foremost I am Molly.
That said I am the first to stand up not just for myself but for others with the condition, something I am always proud to do.

I was surprised but incredibly proud to be asked to speak about the challenges of life with living with Usher Syndrome by ParliAble in the House of Commons.
I had never taken an active interest in the goings on in Parliament but like everything was happy to learn.

On arriving at the Palace of Westminster I realised what an honour it was to be allowed to park in the grounds, we were, naturally searched as was the car before we could obtain our visitor passes.
I found this part quite stressful as the hustle and bustle of policemen and women, security guards and visitors was quite intense, thankfully Uni was as calm but alert as always and on receiving our passes and along with our guide helped me safely find the way to the room in which I was to present.
I was delighted to get to the room well ahead of time, I was able to scan the room, to admire the decor and to get my bearings.

It was in the main green with leather bound seats and dark wooden panelling, patterned carpets which I couldn't look at as they made me feel quite dizzy another of the delights of Usher Syndrome.
From the ornate windows I could see the River Thames, my parents pointed out the boats and whilst it was a beautiful bright summers day, a brief scan around was all my damaged eyes could take before I had to look away and replace my dark glasses to protect my eyes from any further torment and strain and to avoid the dreaded headaches they so often cause me.

I was excited to speak in such an affluent place, I was just amazed people here would be interested in hearing what I had to say, but they were!

It turned out the room we were in was not the room in which I'd speak in, it was the one a couple of doors up but identical.

The lighting was ok for me, not too bright and not too dark and although an old building it had warm furnishings so acoustically worked for me with my hearing aids in.

My presentation was about the daily challenges and struggles of people like myself, the lack of understanding of people with sensory impairment and the desire to succeed and to be valued members of society.

I spoke for about fifteen minutes and while I spoke I could not see the people I was speaking to as my level of sight loss is to the degree that on a good day I tend to just see a part of a persons face, perhaps an eye and nose but usually I'd set my sight on a nose and mouth to try to lipread whilst using my residual hearing to assist me to access the hearing world.
My world might be tiny to see but my determination spans the world.

I was pleasantly surprised to get a round of applause and lots of questions. The questions were relayed to me so I could answer, without assistance I cannot respond to people unless they are very close to me.
I always believe the more questions the more I am raising awareness.

There are at this time no deafblind people working in Parliament but several deaf and several blind. There is, however, no reason a deafblind person couldn't work there, this was confirmed to me during "My Question Time".

I was asked if I was offered a job could I get to and from work, of course I would engage Guidedogs for the Blind to run the route with Unis several times, right up to the room I would work in and I could them completely rely on her to get me to and from work very safely.
My biggest pet hate is the assumption that deafblind always means no hearing, no sight and no speech when with the amazing technology available lots of us can access all sorts of information and our communication can differ but with the right support we can all be successful, support really is key.

We discussed accessibility, modification, technology and mobility in detail along with "reasonable adjustments" all well received and I'm told lots of notes were taken which is very pleasing.

Presenting in The House of Commons was one of my proudest moments and knowing I'm the youngest ever makes me feel very special and privileged and I have been asked if I would return which is a big fat yes.

I have since been back for a tactile tour of Parliament which I would absolutely recommend and will remain in touch with the team at ParliAble in the hope we can continue to raise awareness of Usher Syndrome and perhaps in time get somebody with Usher into work there because "Why not?"

I'd like to thank all those involved in my being invited to do this presentation, to my parents for their support and Unis for being Unis and keeping me safe......

Molly

Read 12071 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

Usher Awareness Weekend and Workshop…

Well it finally came, a date in the diary both Lyn and I had been looking forward to for some time, Amy Winehouse on the 15th of September and 16th...

Read more...

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...

 


 

 

Bradley Timepiece - Usher friendly timepiece - Molly Watt Trust

©2017 molly watt trust, registered UK charity 1154853