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Monday, 11 November 2019 16:20

Meet Colin

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Our first case study (CS1) is Colin age 53 and living with Usher Syndrome Type 3 the rarest of the Usher types.

Colin has worn hearing aids since he was 40 years old and is currently severely deaf and has been registered severely sight impaired (blind) for several years.  Colin is oral.

Having worked full time in management until his early 40’s when the deafness and progressive blindness of Usher Syndrome became too severe feeling he had neither the tools or the support to continue so very reluctantly he chose voluntary redundancy. 

Having felt forced to leave full time employment Colin then attempted self employment in an endeavour to continue working.  This also proved to be incredibly challenging as a result he could not continue. 

Usher Syndrome was making the decisions for Colin his blindness could no longer be compensated by his hearing. 

Cane training and some time later Guidedog training changed his life giving back the ability to be more mobile and more able to escape the isolation of the condition.

Making new friends and finding a new found confidence Colin was able to more accept his condition. 

Colin like most with Usher Syndrome wants to be busy so volunteers for charity. 

Socialising had become particularly difficult without sight and average sound from NHS hearing aids which so often made social environments difficult or unbearable. 

Being completely night blind and unable to hear environmental sounds and sounds of danger when out causes extreme anxiety and often causes many with Usher Syndrome to self isolate. 

Colin was fitted with Resound LiNXQuattro smart hearing aids on 16 November 2019.

Follow his story here.

Thank you to our supporters:

GN Hearing

The Hearing Clinic Glasgow

Previous Usher Projects

Previous Usher Projects

We have undertaken a number of projects to help those with Usher Syndrome.

We appreciate the efforts of all who take part in fundraising events for us and assist in not just our Usher Projects but in supporting other Charities who support those with Usher Syndrome.

For fundraising ideas or to support MWT please contact us.

"No act of kindness, no matter how small, is ever wasted."

Aesop

2015 - Present: Global Giving

Usher syndrome charity projects.Our most current project - as of April 2016 we have donated 36 Applewatches to the Usher Syndrome community and have a considerable list.

Applewatch with its unique accessibiliy feature enables safe navigation for the deafblind using prominent haptics, along with new and accessible apps to make life easier and more accessible leading to a new independence.

In order to use the Applewatch there has to be an iphone.  In choosing Applewatch it was noted by the Trustees that most people now use a smartphone, many choosing iPhone because of it’s amazing built in accessibility.  The AppleWatch also has amazing bluetooth connectivity and as a result is capable of connecting to certain hearing aids which then allow more enhancement to everyday life.

This project is very popular, we are now looking at various ways of funding the project and are delighted our project has been accepted by GlobalGiving Foundation Inc.  Visit our donate section or click on the link below.

£350 can change somebody's life, reduce isolation by enabling them to leave their homes and navigate safely.

 

Click here to donate to this fantastic project!

Thanks in advance

2014 - 2015: The Bradley

bradley projectThe Bradley world's first tactile watch.

Not only was this project exciting as the product very innovative for people with Usher Syndrome being completely tactile, please see Molly's blog.

This was another very popular project and was funded in numerous ways.

The sale of our anti-bullying children's book, Frog, Froggy and Froggit, written and illustrated by Molly-Jane Watt helped fund the project.  This book was published and remains available to purchse via the website.

The Molly Watt Trust funded 22 Bradley watches to the Usher Syndrome Community whilst the project was live.

2013 - 2014: UsherEyes

UsherEyes - the funding of protective eyewear was funded to the Usher Community.  Usher eyes are incredibly sensitive and this sensitivity varies throughout the day and differs throughout the year, hence the need to protect.

The Molly Watt Trust funded in excess of 40 pairs of protective eyewear whilst the project was live.

2012 - 2013: Access to Reading

access to reading

 

Our first project Access to Reading was a huge success in just over a year MWT was able to fund and provide more than 70 eReaders to people living with Usher Syndrome.  

For those with a little sight eReaders are ideal as they offer good contrasts, no glare and larger text. Some wrote they'd not been able to access a book in many years and that being able to read again a complete pleasure in what is often an isolating world.

The success of this project led to Rekindle where we invited those lucky enough to be able to upgrade their eReaders to consider donating their old models to us.  This enabled us to donate these to others living with blindness who could benefit - both projects remain in place for an application form please contact us.

Monday, 14 October 2019 19:47

Ultimately we can all be winners

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This year saw me nominated for three awards, Young Digital Leader for Digital Leaders for the second time (Too old for that one again) Positive Role Model for Disability, National Diversity Awards and lastly second year running I made it onto Shaw Trust’s Disability Powerlist 100 and I am extremely proud of this acknowledgement of my work. I want to thank everybody that nominated or voted for me I am truly humbled, it is my intention to remain in the public eye and continue my work raising awareness of digital, accessibility, diversity and inclusion. We all have a unique skill set, something I believe we should be taught to embrace from a very young age, something I wasn’t particularly aware of throughout my education, however it became more clear when my first employer, recognised my skills as positive and that as a result of my condition I was overly aware, in fact very attuned to accessibility, usability, diversity and inclusion particularly within assistive technology. It is no secret that up until being employed by Apple in Reading I had experienced discrimination and rejection throughout my senior school education, my part time job search and then higher education, and as a result anxiety and depression. My hand was forced 4 years ago when University let me down. My choice was either fight to be included on my course or walk away and fight the cause on a bigger scale. It really was the most difficult choice, however, the thought of fighting with tutors and lecturers to access a course I would have excelled in for 3 years was not something I could have dealt with back then. Exclusion had become an every day theme and it had become detrimental to my mental health and for that reason my choice was made. I left and threw myself into running the Molly Watt Trust and my part time job at Apple and began learning exactly how enabling assistive technology really is. Training at Apple is brilliant, it was here that I realised not only how aware I already was about accessibility and usability but how beneficial my unique skills were because ultimately I really was the ‘Needy” end user in many ways. Already my iPhone and MacBook had enabled me to access a plethora of things throughout my fragmented education, it had also inadvertently allowed me to isolate myself but still feel included, that’s a whole new story! Apple was the first big organisation to give me a chance, I had been turned away from several potential employers from age 16 through to 20 years old, watching my hearing sighted friends getting on, earning money working in all the usual places. Until Apple I had experienced more exclusion than most and yes, it does nothing for confidence. It was at Apple that I really found myself. I was a very much respected member of staff, in fact I inadvertently became something of an accessibility champion because of the person I am. Without realising it until then I had become quite a whizz with assistive technology and that coupled with Apple training propelled me into a whole new place. Everything I touched, felt and experienced became all about accessibility, usability and finding the ultimate route to inclusion. Many will remember my blog my-apple-watch-after-5-days it went viral, I think in the main because I was looking at exactly how, what was the newest Apple product at that time, was useful to people with disabilities, how accessible it was and it was from here that I found my stage. I can thank applewatch for finding GN Resound, they were the first to have hearing aids both iphone and applewatch bluetooth connected and who’s game changing smart hearing aids changed my life providing me with access to sound like I had never experienced before, accessing sound in a pure way enabled me to be included in a whole new world of sound as my vision had deteriorated. GN Resound took a real interest in me and my condition. They genuinely wanted me to, as their strap line says “Hear more, Do more, Be more” and their hearing aid technology has done that and more, it gives me great pride to be both ambassador and advocate for their life changing assistive technology. My understanding and complete reliance on assistive technology has resulted in me consulting in this field alongside some amazing organisations including GN Resound, Apple Cupertino, Sigma Solutions, BBC Accessibility, NHS Digital, Government Digital Services, Business Disability Forum, Spotify, ASOS, LinkedIn San Francisco, Pro-QR Netherlands, Diversity and Inclusion Advisory Board, Open Inclusion, Scope the list goes on and on but all in the name of diversity and inclusion. I continue to raise awareness of my condition and to mentor and bring together people living with Usher Syndrome/deafblind and will continue to do all I can to encourage those living with this cruel condition to live their best lives. I didn’t win any of the awards I was nominated for, some amazing competition out there but being involved and being a part of positive change every day, I know ultimately we will all be winners.
Tuesday, 02 July 2019 16:00

Virgin Train #Fail

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We were truly horrified to hear of Molly's recent expereince at London's Euston Station and it must never happen again:

 

I travelled from Maidenhead to London Euston to catch a train to Warrington Bank Quay.

I am registered DeafBlind and a Guidedog owner, I am a regular traveller. 

On arriving to London Euston - an extremely busy and challenging station for anyone with a severe sight loss.  Whilst doing my best to navigate the station  I dropped my ticket and couldn’t see enough to retrieve it , I have just 5 degrees of sight in one eye, I couldn’t find my ticket -  I had lost my ticket.  At this stage I was not stressed as I did have a printed receipt and a digital record of both the booking and receipts. 

 

Whilst I was stressed I’d lost my ticket I felt quietly assured my proof of purchase would suffice.  I found my way to the assistance section of Euston in good time, I was then escorted to the ticket desk where I was greeted by a lady who was the extremely unhelpful “You have to buy a new ticket” I was shocked, I stood there with my Guidedog.  I told her I had dropped my ticket and was unable to find it as I am blind, she could clearly see I was stood there with my Guidedog.  I asked for the manager who arrived and suggested  “18 months ago I could’ve helped you”.  He didn’t explain further.  Just stating that any lost/ stolen tickets have to be re-placed and repaid for in full before I could get on the train.” 

Once again I explained I’d dropped my ticket and for obvious reasons I could not find it, by now I was in tears, completely stressed and anxious, he just looked at me, not an ounce of care or consideration for my situation. The manager just left, leaving me with this rude and unhelpful woman.  I took the opportunity to ask what the relevance of why I would have been helped 18 months ago but not now, he response  ‘that’s a conversation with the manager!’

This rude woman was quick to charge me full price for a ticket without even asking if I have a railcard - which I do because I am BLIND. 

This woman put the card machine down and all I heard was “put your card in there,” I, was in tears and said to her “I am blind’ where is the card machine?  She walked away and just left me knowing I was struggling and getting ever more distressed.  ‘I can’t see the machine, I asked for contactless she said no, it’s over £30. “Talk to your bank”.  I failed to key in my PIN properly  first time as the card machine was inaccessible.  The woman was clearly inpatient.

As I was about to leave I asked her about my reserved seats - “No, no seats it’s too late.” I was gobsmacked - she had just booked my ticket knowing I am blind, in need of  assistance and space for my Guidedog. In floods of tears I told her how unhelpful she was. I am sat on the train currently feeling very emotional and disheartened. This customer serviced is completely shocking. How dare they treat me such a way. 

 

Virgin Trains this is completely unacceptable and I expect an early response, a full apology and a full refund but even more importantly I want your staff to be fully trained and aware of how to treat people with disabilities.

Friday, 28 June 2019 12:16

Helen diagnosis 'I felt my world fell apart'

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My name is Helen Colson. I’m 29 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely deaf, Ushers Syndrome last year. 

It wasn’t easy getting my diagnosis after Specsavers were concerned about my visual field test results and referred me (via my then GP) to Heartlands Hospital in Birmingham as that’s where I was based at the time. 

After dilating my eyes and other tests, they initially wanted to write it off as jelly breaking off at the back of my eyes which is apparently common for someone in their late 20s but they were concerned about scarring on the back of my eyes and was told I’d be seen again December 2017. 

In November 2017 I went to do my visual fields testing again but didn’t see a consultant until July 2018. I weirdly don’t remember this appointment at all. Other upon informing them I was just about to move to Southport; I was asked to stay until my diagnosis was sorted. Two months later I had another visual fields test and the nurse was concerned as it was getting worse, so managed to get me to see a trainee. We had a chat and it was suggested I needed to go to two other hospitals in Birmingham for further testing as they couldn’t do an MRI scan. 

In October I went to the Midland Eye Clinic for electrodiaganostic testing which I got very anxious about as by now I was getting desperate for answers. I returned in November to see a different consultant who didn’t know why I was there and would later on send my diagnosis via letter. 

I felt like my world fell apart after reading that letter and jumping straight onto Google. I’d only ever heard of Ushers when Molly appeared on SeeHear about a decade before. 

I did eventually see my consultant again January 2019 & my care wasn’t transferred. But I am seeing Professor Black in Manchester next month. 

It’s been a very scary six months post diagnosis especially as I was left with no information or support initially and due to my pre-existing ambolyia in my left eye I didn’t want to go blind. I also had a massive breakdown but now I’m learning to rebuild my new life. I have a symbol cane & am learning to use my long cane. I am going through the process with Guide Dogs to get one. I’ve luckily found someone here who also has it herself. So we both really support one another. 

I’m also currently running my own page (Living with Ushers Syndrome) & am making a documentary about the condition as so many have no idea. 

I don’t know what the future holds but I’m trying to tackle it head on & won’t let it stop me from continuing to add to my many achievements.  

Thursday, 27 June 2019 15:26

Olivia's Usher Life - Last few months of emotions

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Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to tell you all and I can’t wait to tell you everything. I think this blog is going to be a very long one so I think you will need a lot of time to read it, sit down with your favourite thing to drink and a few snacks and I just hope you are looking forward to reading it. The things I am going to tell you are, going to the hospital and getting tests done, getting an Apple Watch, more stuff about my cane and meeting others with usher syndrome such as Molly Watt so here it goes....

So let’s start from the beginning of these hectic months, so I went to the hospital to have an electro diagnostic test where I had my eyes numbed and I had wires put under my eyes to test my muscles and nerves in my eyes, not going to lie I was sooooo nervous because I had no idea what was going to happen and I kind of liked it that way but then I didn’t if that makes sense. Like I knew that if I didn’t really know I wasn’t going to freak out as much, honestly it wasn’t that bad! There was just no pain at all which was soooo good, the only bit that wasn’t very nice was the eye drops and then when the doctor put these sticky pads on my head he had to use some sticky glue for it to stick and it was gritty so it hurt when he was putting it on my head it was like a scratch but yeah it really wasn’t bad which was such a relief haha!!  My next appointment to go to my normal hospital is in August when I will find the results as much as I do want to know my results it’s not going to change anything, as you all know there is no cure, it’s still upsetting but there’s no point waiting for one to happen you’ve just got to keep going!! The people who have had eye drops will know what I mean haha, your eyes do just water!

Next up is about MY APPLE WATCH!!!! I haven’t wanted an Apple Watch just for the fun as you know I love technology haha! But now my eye site is getting worse I’ve found out that an AppleWatch is like the next best thing because it’s small for my peripheral vision and it vibrates to notify me when I’ve got a text or call. I can answer calls on it and I can hear it very well and it’s always with me, so it’s very handy! Another thing I’ve learnt is that it can tell you where to go if your on google maps, I had a go on the weekend it was really good, different taps tell you to go left or right and then when you have reached where you have to go. It is a very good gadget so anyone with usher syndrome I would definitely recommend it. I’ve only had it for about a month and it’s changed my life completely!!

So here goes the more emotional talk, as you all know my views on having a cane from a previous blog.  The lady has come in again and has ordered a cane for me, like really? I sooo don’t want one but then I’ve got to try! We were going to have a go with one she has brought in but because of exams being on we couldn’t which I was quite happy about haha! I just hate the fact that when I get the cane out I’ll be read as blind, I’ll become a book! I just don’t want to be seen as blind because I’m just scared that people will say stuff like omg she’s blind or oh yeah let’s trip her up she won’t see me or even laugh at me because I’m holding this cane. Just yeah I’m not really happy about it but at the end of the day it will tell others to stay away from me and to just mind out the way, if they don’t they will get hit haha! But yeah no one is alone, people do have canes and manage so I’m sure I will. Once I start training I may enjoy it which will be good haha!

The final thing I want to talk about is on the 22nd June there was an Usher Kids Day for children and families who are suffering with usher syndrome and need help and get to know others with usher syndrome. I’m not going to lie I really really didn’t want to go because I was like what difference is it going to make? But believe me it made me way stronger and I met some amazing people who I can now talked to about my condition and help me with any problems. I spent a whole day there and

everyone was so nice and so understanding and it was nice to know that I wasn’t alone. It was very emotional hearing other people’s stories and about how they felt but also how similar everyone’s symptoms were! It just brought a massive relief that I’m not the only ‘deaf blind’ person in the world. One of the best things that happened to me was meeting literally like my hero Molly Watt who also has Usher Syndrome, I don’t know how I would of coped these couple of months if it wasn’t for her

positivity! She is literally the best person ever in the world and just to meet my idol was sooo emotional! She was just soooo lovely and it was really nice to get to know her even more although I was in a right state haha how embarrassing!! 

 

 

Thursday, 27 June 2019 11:13

Where did our journey with Usher Syndrome begin?

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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

Tuesday, 25 June 2019 14:11

The evolution changing Usher Syndrome

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Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed. 

It remains a condition without a cure. There are variations in level of deafness, in level of blindness, in chosen mode of communication, in chosen method of mobility aid(s).

We all have daily challenges living with deafness and progressive blindness but it doesn’t mean we are incapable of living fulfilled lives.

Since my diagnosis and acceptance of my condition I have learnt lots of things not just about the condition but also about attitudes towards it.

Sadly there is still ignorance surrounding it and also far too much negativity.

Usher Syndrome is a challenge for all living with it, however the challenges vary from person to person. 

Communication is an interesting one, age is definitely, in my opinion a big factor. 

It is wrong to assume all with a profound hearing loss communicate using sign language.  At 24 years old I have met lots of people with usher worldwide and my observation is that the older generation of all usher types with varying levels of deafness are more likely to use sign language to communicate, but there are some younger people still using sign language, that said some do communicate orally too.  There must always be consideration of the varying communication types. 

The younger generation, our millennials, are much more likely to be oral, though again some do sign.  I believe the reason for the change is because hearing aid technology has never been better.  Cochlear implants have made an enormous positive difference along with the complete evolution of hearing aids in my lifetime from analogue to digital and more recently the smart hearing aid - yes, assistive technology wins the day. 

It is actually technology that is evolving, not Usher Syndrome and we need to embrace it.  To really embrace it there needs to be more understanding of needs and what assistive technology is available and the biggest ask is we need funding for real enablement.

Ever considered a pair of smart hearing aids would cost less then the equivalent of somebody being unemployed for a year and that is without considering the health and wellbeing of a person able to be an active part of society, to be included is priceless in my book.

Neither cochlear implant nor hearing aids are a cure for deafness but an amazing aid for listening, hearing and accessing communication and information, but that is only the beginning.

Did you know the *smart hearing aids I wear have bluetooth connectivity to a plethora of mainstream technology.  What this means is that sound is streamed directly from my iPhone, applewatch and to my ears, as a result I can now hear and use a telephone which might not sound much to many but when you consider how often help is still only available via the telephone, it shouldn’t be that way but it is.  Using a telephone is also very enabling in the workplace.

Being deafblind and able to hear clearly brings access to the many apps that amongst others Microsoft have developed for the blind that can only be accessed aurally, for instance I can point my phone at an object, person, environment and the app (Seeing AI) will describe it to me.  This enables me to be more independent to not be fearful of not having somebody to ask when I am out and about, on that note I should mention the importance of directional sound for somebody deafblind.  Since wearing smart hearing aids I have benefitted enormously, I can now not only hear a sound, be it speech, a siren, a sound of danger or an alert of any kind I can turn to that sound and act accordingly.  I can now rely on my ears to compensate for my eyes, for me this has been the greatest thing I have experienced since losing my sight.

I always thought I had pretty good speech and I did but since wearing smart hearing aids my speech has improved. I hear speech differently, tones and clarity, a sort of warmness I hadn’t experienced before and has made so much difference. 

I no longer feel the isolation I used to in what was a pretty silent dark world.  Doesn’t everybody deserve that? 

For your information:

These two youtube pieces demonstrate the change in my speech - check me out at age 14, excuse dodgy hair and glasses! https://www.youtube.com/watch?v=z8tXf36Qx6E 

then compare now, thankfully dodgy hair and glasses gone too https://www.youtube.com/watch?v=Hq6rRQTIoqM - don’t we want this for everybody?

 

*Smart hearing aids worn LiNXQuattro by GN Hearing

I regularly champion assistive technology, it has changed my life beyond recognition and I want that for all living with Usher Syndrome who can and would without a doubt benefit.

Sunday, 23 June 2019 19:32

Whispers in the Dark

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It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant. Having to feel your way through an unfamiliar room in the pitch black. Having to hold onto your mate as they stroll through the club. Having to desperately apologise to someone after walking straight into them in the supermarket. Those of you with Retinitis Pigmentosa know exactly how it is. Those of you who don’t might only begin to imagine. What on earth is it like to see in front of you, and to your left, but not in the middle? Is it black? Is it blurry? It’s neither. It’s just not there. I ask you the same question: What is behind your head? Is it black? Is it blurry? No. It’s just not there. This is what it is like living with peripheral vision loss. “Oh, you’ve got vision loss? Have you thought about wearing glasses? Are you wearing contact lenses?”. I can’t blame people for being uneducated on the matter. How many people do you ever bump into with peripheral vision loss? It’s just not a common thing.

The eye is a complex thing. Most people know about the lens, the iris, the pupil and the retina. Maybe you know about the cornea, the macular and the optic nerve too. The majority of those who suffer from some degree of sight loss have a problem with their lens; It just isn’t the right shape. Some people are shortsighted, where they are able to see things close, but not far. Some people are farsighted, where they are able to see things far, but not close. Some people just have a lens that doesn’t allow them to see either. This is all stuff that can be corrected with glasses. Glasses simply alter the way the light rays enter your lens, so that the correct image ends up coming out on the other side. Most of you probably know that the image projected on your retina is actually upside down. It is the brain that ends up inverting this image, so we see things the right way around. It’s amazing what the brain can do. There was an experiment where some guy was asked to wear glasses that turned everything upside down for a few weeks. After just ten days he was able to fully adapt to this upsidedowness, and his brain had actually inverted the image back the right way up. The process of him removing the glasses caused him to start seeing upside down again. It then took another week or so for his brain to adjust back again. Similar things happen to those with sight loss. Someone born completely blind just has no possible comprehension of colour. People say things like “hot is red and cold is blue”, but what the hell does that mean to someone who has never seen a colour in their life? You cannot fully comprehend something you haven’t experienced; it is just a fact of life.

“What did you say?”, “Sorry, what was that?”, “Excuse me, I didn’t quite catch that”. No doubt that these are phrases that deaf people almost feel like they need to have recorded on their phone, so they don’t have to waste their breath repeating them every fifteen seconds during a conversation. Being sat there on a table, watching people throw their opinions about whilst moving your head back and forth trying to lipread everything being said is, let’s put it this way, bloody exhausting. Some people are easy to understand; they have a clear crisp voice and speak in a way that resembles the language that you have grown up understanding. Their lips move in a concise manner and they don’t have any lisps or a strong accent. Personally, I find women a lot easier to understand than men. Their tendency to have higher pitched voices really fills the gaps in my hearing loss. On the other hand, some people just cannot be understood, no matter how hard you try. Whether they have a strong accent, a really quiet voice, lips that barely move, or a massive beard that gets in the way, it is just a constant struggle. I’m sure other deaf people can relate, but is there ever a certain person in your social group or who you work with that you just hope you never have to have a conversation with? It’s not that you dislike them, but it is just the fact that you know it will be a constant struggle to have a one to one conversation with them.

It’s not just the social struggles. Being deaf comes with its other problems. Ever wondered what it is like to be woken up by a vibrating phone under your pillow? Trust me, I’d sooner have an elephant wake me up. Ever had to go into a hotel and work out how you are going to know the fire alarm is going off? Ever felt extremely isolated because your hearing aid stopped working or you had forgotten to put fresh batteries in your wallet? Ever had terrible earache, but needed to make the decision between sticking the hearing aid in and suffering, or pulling it out and not hearing? It does come with its benefits though; Being able to turn your hearing off is a huge bonus in some situations. Kid screaming on the bus. Off. Bloke playing his music too loud next to you on the plane. Off. Annoying conversation that you don’t want to hear. Off. Car alarm going off outside when you’re trying to get some sleep. Off.

What’s worse though? Would you rather be blind or deaf? It is a common question that goes around, especially during philosophical discussions with a bit of alcoholic influence. I love these sorts of discussions. It really takes people to a different level of respect for their senses. Some people would rather be blind because of their love of music and the birds singing in the morning. Some people would rather be deaf, so they would still be able to drive their car and see the stars at night. Whichever you choose, it will no doubt mean a significant part of your life will be diminished, or worse, destroyed completely. Some people don’t have that choice though. Some people must deal with both. Being completely blind and completely deaf at the same time is extremely rare, but those who have some degree of both hearing and sight loss are fighting a battle of two competing senses. Typically, one backs up the other. You may hear stories of blind people with supersonic hearing, or deaf people with eagle-eyed vision, but those with Usher Syndrome and other deafblind disabilities are neither of those. One sense doesn’t help the other. Rather, it makes the other even worse. So I think it is safe to say that you should make the most of the senses you have, as it is something that you might one day wake up without. It is our senses that make us who we are, and without them, we would live in a very bland world. But for those of us who are deafblind, I guess we must make the most of those whispers in the dark. 

Thursday, 16 May 2019 07:02

GAAD - Not if but how!

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Indeed back in the 19th Century it was Helen Keller who stated “DEAFNESS SEPERATES US FROM PEOPLE AND BLINDNESS SEPERATES US FROM THINGS”. Back then she was right, she lived in a time where there was no assistive technology to help her live her life and having read about her since my own deafblind diagnosis it is fair to say she was one determined and inspirational lady.

I have often referred to both Helen Keller and Laura Bridgman before her.  They both found a way to communicate and to make the most of their lives.

How we have moved on, I cannot imagine the isolation and frustration they would have endured. 

Today there is no need for anybody to feel the separation/isolation that was experienced back then. 

My disability isn’t the only issue when it comes to accessibility, more often than not I have been the educator. 

The problem with this has often been those older than me, more educated or more senior than me can appear to have a problem listening!

When I was at a mainstream primary school as a deaf youngster I was very well supported because my teacher of the deaf understood deafness, equally my VI teacher knew her stuff but put the two together and both used mainly guess work to support me!

Being deaf meant I used hearing aids and a radio aid to access sound, the rest of my support was from people who for me were both patient and kind, providing me with confidence and the ability to be included in all aspects of mainstream school life.  I was not seperated from people.

Early access to sound and appropriate support enabled me  good communication skills which I used to tell my educators and support team what I needed particularly as my sight failed, the question again was were they listening? 

The blindness diagnosis alongside deafness was beyond challenging and at this stage my support system began to creak and fall apart in a number of ways.

I was provided with a VI teacher (visual impairment) an older lady who was sympathetic and good at her job but knew nothing about deafness and as time revealed she was a bit of a technophobe, this was a real problem as it had become very clear to me that technology would be my way of accessing so much.  I did eventually get a teacher who specialised in deafblindness and she was great but I only had access to her once a term!

Only 10 years ago many saw modern tech as ‘flash’ and inappropriate for school whereas I saw it as my way to be inclusive.  I didn’t have to stick out like a sore thumb and I could make lessons individually accessible.  Fellow pupils did not have to put up with large text or contrasts they didn’t want because all adjustments were made by me for me.

I became knowledgable about assistive tech by accident really and I applied that knowledge to my schooling. Unfortunately many educators stuck in their ways would openly admit they “don’t do technology” but do they know how much that holds people back?

I am delighted to hear that younger kids living with usher syndrome are using modern technology like iPads and MacBooks in school, also lots of apps to access eduction, enabling them to not only fit in but to be active achievers in mainstream environments.  Things are moving on nicely but there is still so much more to do.

I no longer feel separated from people as although every morning I wake up a deaf person I soon fit my smart hearing aids and I am able to access sounds that make our world go round and I am a part of it, I am not isolated unless I choose to be.

Blindness is different, definitely the more challenging condition, particularly being combined with deafness but I refuse to be separated or isolated from things so I have embraced technology.

I am an ‘Apple Fangirl’ I don’t say this because no other tech works I say it because it works best for me.

Apple products have some amazing built in accessibility features which I am very familiar with and they have got better and better forming my hub for inclusion, the ultimate icing on the cake for me is the connectivity to my smart hearing aids, GN Hearings LiNXQuattro’s.

Using my iPhone I am able to access numerous apps made to make life easier for the blind, some of the best made by Microsoft.  Without my hearing aids being bluetooth connected I would not be able to benefit from some of these apps which use audio description meaning I need a decent level of hearing, massive thanks to the team at GN Hearing for their innovative products.

The accessibility tools I use are all mainstream so useful and widely used by many it remains that all too many websites are not accessible or set up to enable full use of the built in accessibility features on most digital devices.

This Global Accessibility Awareness Day I’d like people to see accessibility as a doorway to inclusion, my wish would be for people to think about accessibility in everything they do. It is not just about getting in and out of somewhere it’s about everything, it’s a part of everything, it should be at the top of any to-do-list as it matters to all of us. 

It should never be if but how!

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