A A A Accessibility A A A A
Sunday, 23 June 2019 19:32

Whispers in the Dark

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. 

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 was made 3 years before I was born and how true it is.

My life would be so different without technology, even in my lifetime it has gotten better and better and allows me to be the person I am.

Without hearing aids I would struggle so much more with communication, that is not to say I wouldn't be oral but life would have been far more difficult as I know it was for many older than myself. 

I had analogue hearing aids to start with, friends my age who were profoundly deaf and did not find hearing aids useful were not implanted until 3 or 4 years old meaning they were a long way behind their hearing peers speech wise, some caught up and some didn’t.

Today children are bi laterally implanted often under a year old and that early access to speech is allowing them amazing communication skills, being implanted 2/3 years earlier makes a huge difference.  

The earlier the access to sound the better.

Profoundly deaf children are now so much more inclusive than ever before.  I really enjoy speaking in schools where they have deaf children and seeing how well they are doing with their up to date technology - the Cochlear Implant.

However, it makes me very sad that children and adults who need hearing aids often do not get the best available and have to get by.

I did okay with analogue and early digital hearing aids but I was one of the lucky ones, I had fantastic support from my family and local services, unfortunately this sort of support remains a post code lottery.

Now that I have the very latest in hearing aid technology, GN Resound's Linx2 I can see what so many are missing.

Anybody who wears hearing aids will tell you a new pair of hearing aids takes some getting used to, usually a couple of weeks or so and I was fully expecting this with my Linx2, however, these hearing aids took nearer 6 weeks to fully appreciate and it was really hard work.  The reason for this was there was so much more for my brain to process, yes a whole lot of new sounds I had never experienced, it seemed my brain heard the new sounds before the old ones and I was in a state of confusion with it all for at least 2/3 weeks and it was a very tiring time, however, I slowly got used to the new sounds. The new sounds and different way of hearing has resulted in lots of compliments on the new quality in my voice.  

Strange, I thought my voice was ok before but to be told it has improved has made me very happy.

The clarity of sound is amazing, I can decipher lyrics in songs rather than humming along and making up my own words.

I hear familiar voices differently and I can now rely on my ears to compensate for my blindness which really is a massive deal.

I have blogged about coping strategies and how the deaf can hear with their eyes, lipreading, facial gesture, body language, how some use sign language, a completely visual way of communicating and how I felt more deaf as my eyes began to fail when in actual fact my hearing was stable it just showed how reliant I was on visual clues - I was more deaf!

Usher Syndrome (deafblindness) has brought a whole lot of new challenges and some of them can be eased with the ability to rely on the awesome technology in the Linx2 which goes a way to compensating for failing vision with their ability to provide such clarity in hearing, to make listening less exhausting and the most amazing feature that blew me away “Spatial Awareness” now not only can I hear things I have never heard before, I now know where sound is coming from and can adjust settings myself based on my environment. 

When you then add the amazing connectivity to smartphone and Applewatch I can now hear and speak confidently on the telephone, giving me the ability to communicate in a way I never thought possible.

Usher Syndrome type 2, the type I have is the most common of all Usher types and can be diagnosed at any age.  Most have a hearing loss between mild, moderate or severe so tend to be hearing aid users and yet they do not receive the same consideration as those profoundly deaf, in fact there are areas in the UK where they have or are looking to save money by not providing NHS hearing aids to those with a mild loss or only funding one which is a complete nonsense.

Hearing aids, even the very best like mine are a fraction of the cost of cochlear implants.  

Being able to hear is important to ALL deaf people irrespective of level of loss.

We need the best technology for all, it means allowing people like myself to be valuable and inclusive members of society and not isolated.

Blindness and technology is different for me, firstly I was not born blind, I had perfect vision until I was 11 years old, at least I did for sure in daytime, darkness has always been my enemy, I thought just because nobody liked the dark!  Perhaps I was night blind back then!

Anyway it doesn't matter, I was brought up a very visual learner and for that reason a lot of what is expected of a “blind person” doesn't work for me as a deafblind person.

Firstly I was told I must learn braille and learn to touch type!

Braille didn't work for me as I could read text, even though the text has to be in a certain format for me to access it and I can only read a little at a time, why did I need Braille, perhaps a string to my bow at some stage but not a priority for me.  

Touch typing was an interesting one because I could virtually do it already, I guess because I’d had use of a computer from an early age it wasn't really something I had to learn.

Having a macbook has enabled me to access the world since my Usher Syndrome diagnosis no extra software just awesome accessibility built in.

However, I have realised there is a lot of work to be done on accessibility and I guess understanding will come as those involved with accessibility become more aware of the different conditions and exactly who they are catering for.

Deaf people with hearing aids or cochlear implants can hear, how much they hear comes down to the individual, lots rely on captioning or subtitles to access information.

In my case I’d rather be asked what i can hear, then my needs can be accommodated properly.  

Equally most blind people can see something, I have read somewhere that only 5% of blind people see nothing at all, again for me I’d like to be asked what I can see.

The assumption that all deaf people hear nothing and communicate with sign language and that all blind people use Braille or Voiceover is stereotyping and not acceptable.

Clearly nobody considers people with Usher Syndrome might not be able to use Braille and not hear to use voiceover or like myself not made the transition to aural learner in which case it would make absolutely no difference how much verbal describing any app does, Facebook are you listening?  

You are not meeting the needs of the majority of blind or deafblind people who choose to read text they can modify themselves.

It is pleasing to hear Android users can finally access dynamic text, just cannot understand why the hold up for those of us using IOS, especially as it has been made available on Facebook messenger.

I have asked when the required changes are being made but no response to date, I’m hoping sooner rather than later.

I know lots of people with Usher Syndrome and our needs do differ however we all have one thing in common, we want to benefit from technology, it really does make so many things possible, it can enhance our lives, allow us inclusion and safety, give us the ability to communicate with others and to be active members of society.

Please, please, please consider all our needs..

Saturday, 28 February 2015 00:00

Success at the IBSA World Judo Championship

As most of you will be aware I am a judo player and represent Great Britain. I also have type 2 Ushers!

Last weekend (21-22 Feb) I attended the IBSA World Judo Championships in Eger, Hungary, along with 5 team mates.

The competition is a qualifying event for Rio so tensions were high! In my first round I drew the current Paralympic champion Masaki Kento – Japan (who makes me look tiny!). Unfortunately I was unable to conquer him and he threw me in a rather powerful throw. As I lost the first round I dropped into the repercharge which means I then had to win my next 2 fights to win a bronze medal.

I dominated my next fight against Baurxhan Begaidarov from Kazakstan , defeating him in 40 seconds which meant I moved onto the next round to face the semi-finalist Aleksander Parasiuk from Russia. Aleksander is already sitting nicely on the qualification ladder so he did not come across as very happy when I defeated him by ippon in 20 seconds! At this point my coach got a little excited as this is my first really big International win and will catapult me from 11th in the World rankings, to probably top 6 which is a very comfortable place to be! 

So all in all I was very pleased with this result. Out of the 4 medallists, the other 3 all competed in London 2012, so I am definitely up there!!

The following day I was entered into the Junior World Championships (I am 18). GB have a strong history in this event so I was determined to carry this on. Unfortunately for me 3 of my opponents refused to fight me! (Chuckle) so I obtained automatic wins from them and defeated Abderrahim Mehdaoui from France to take the Gold and the World Championship title. Top Junior in the World – think I can handle that!

Having the National Anthem played for me was quite emotive! Let’s hope I hear it again soon!

Following the 2 competitions we had a 3 day training camp so I got to spend a lot of time throwing people about – I made sure I got a few throws in on the big Japanese fella that beat me! Can’t let him think I’m a wimp!! J

 

I’m onto Brazil next in 2 weeks’ time followed by Germany in April and Seoul, Korea in May! Busy boy!

Please follow me on twitter – jackhodgsonjudo as I strive to qualify for the Paralympics next year!

 

Wednesday, 12 November 2014 00:00

Partially Deaf, Partially Sighted, Totally Usher!

My name is Fabrizio, I have Ushers and I am 35 years old. Or to put it another way, I am 18 with 17 years worth of experience!

Like many Ushers I was born deaf and again like many that is all I thought it was. I did speech therapy, I played lots of sports, particularly rugby, and over time I got confident in myself and really did not see the deafness as a barrier to achieving any realistic goal that I set myself. I did notice that I suffered from night blindness in my teenage years, but thought nothing more of it. I also found playing rugby a bit more difficult because I started to struggle to catch balls thrown to me from the side (but not from the front or up high) and I put it down to being outside a centre with a really weird passing technique. With hindsight, it is one of the interesting things that you realise as an Usher, the brain will very subtly adapt to accommodate any shortcomings without you even noticing.

And so life went on. I went to university, I learnt how to drive a car and then I got a job in the civil service. Around 2004, at 25 years old, I thought that I really should look into the night blindness. I was working in London at the time and walking among the daily commuters in the dark was proving to be quite a bruising challenge. So my GP referred me to the Chelsea and Westminster for a specialist eye examination. The doctor assigned my case was a pretty girl of Iranian descent. She looked into my eyes and said, “Hmmm, I think I would like to run some more tests.” Five hours later, three rounds of eye drops, a boring cycle of waiting in the waiting room and then having bright lights shone into my eyes, and a brief examination by her boss produced the verdict.

“I think you have RP, Retinitis Pigmentosa” she said. She showed me blown-up pictures of my eyeballs (I still have them and so included with this post) and pointed out the faint dots scattered around. She further explained that in view of my deafness, it may well be a condition called Usher’s syndrome, but she would have to refer me to another specialist for that diagnosis. I took the news pretty calmly, not least because it had been a long and very boring day and the whole thing felt rather surreal. But things were going to get a bit more amusing. “What are you doing on Saturday?” she suddenly asked. “Wow” I thought, “maybe this day is about to get better?” So I replied that yes I was free. “We have a group of trainee doctors and we like to have good subjects for them to practice diagnosing.” Noticing the odd expression on my face she paused. To which I explained to her that asking a man if he was free on Saturday usually meant something else. Her subsequent blush was the highlight of my day! She was a nice girl and yes I went along and got peered at by a group of trainee doctors. Some of them even got the diagnosis right!

It has to be said that not much changed for me. I went to see more specialists and the Usher diagnosis was confirmed. I got on with things, I had things to do, places to be and I wasn’t going to let Ushers stop that. I moved to Bristol and was still driving. It felt like a problem that could wait. The tipping point for me came about five years later when I started to get worried about the driving. For those who know Bristol, it is not a car friendly city and there are a lot of reckless cyclists and pedestrians seemingly bent on lemming like dashes into odd places. I realised I was missing things, important things and it started to feel like one day I was going to just not see someone with tragic consequences. So I referred myself to the eye specialist and the DVLA who came back with the devastating judgement that I would have to surrender my driving licence.

It was quite a shock, which seems silly really as I should have been expecting it. More than anything else, it was the perceived loss of independence that really got to me. I wanted to continue to be self sufficient, to be able to go anywhere I wanted and to do what I felt like doing without having to rely on others. It was how I lived my life, with the attitude that my disabilities were not going to stop me. In some ways that feeling never goes away, if I am having a bad day that feeling of not being as independent as I once was bubbles up. I have grown more comfortable with it over the years. I can even make the joke that others have to do the driving so I will have to do the drinking on their behalf. But that little spark of resistance is still there, couple that with my innate stubbornness and no doubt I do persist in doing things that others would give up. For example I still cycle to work whenever it is light enough. Risky? Undoubtedly, but I feel it is manageable and I absolutely do not want to give it up unless I have to. I feel that as an Usher sometimes it is vital to stubbornly hold onto the things that are important to you even if it does involve taking a bit of measured risk on the way. It is the only real way we have of showing that we will not let our disability rule us and we are still capable of having meaningful lives and having fun while we are at it.

So yes life has changed a lot, but that is inevitable for anyone, with or without a disability. I have to make some adjustments, but I find it is more a matter of planning ahead and thus avoiding putting myself in difficult situations. Work is sending me to Copenhagen for a couple of days next week. I am looking forward to it because I have never been there before, but I am going on my own and a northern European city in late November is going to get dark early which is a bit daunting. However, I have planned the route and I am informed that the Danes are superbly friendly and helpful. In fact, I even have a small bet with myself as to whether I can make it to the train at the airport while carrying my white stick without receiving an offer of help. Sometimes you just have to ignore caution and take a bit of risk to experience the best of life and people.

 

My advice to other Ushers is don't let the fear, particularly of the dark, rule you. Try to avoid staying at home because facing that dark and noisy world is so daunting. You are probably not going to really enjoy clubbing, but there are still so many things you can do. You just have to want it bad enough and to be willing to plan well to make it happen. Failing all that, just cheerfully jump onto a friend or even a stranger for help. You can be amazed how positively responsive they can be.

Or as it says on the T-shirt – Partially deaf, partially sighted, totally Ushers!

 

Pin It
 

Recent Blogs

Helen diagnosis 'I felt my world fel…

Helen diagnosis 'I felt my world fell apart'

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...

Read more...

Olivia's Usher Life - Last few month…

Olivia's Usher Life - Last few months of emotions

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...

Read more...

Where did our journey with Usher Syn…

Where did our journey with Usher Syndrome begin?

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...

Read more...

The evolution changing Usher Syndrom…

The evolution changing Usher Syndrome

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...

Read more...

Whispers in the Dark

Whispers in the Dark

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...

Read more...

GAAD - Not if but how!

GAAD - Not if but how!

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...

Read more...

Equal access to sound for all

Equal access to sound for all

Today is ‘Rare Disease Day -2019’ So I decided on a blog about hearing aid technology that can and does enhance lives.  This http://www.nciua.org.uk/latest-new/ was brought to my attention several weeks ago. ...

Read more...

LiNXQuattro 'LiNX to Everything…

LiNXQuattro 'LiNX to Everything"

I have to admit that as time goes by, wearing high tech smart hearing aids has become just a part of me.  I imagine this must be how natural hearing...

Read more...

#GAAD 2018 - Exclusion to Inclusion

#GAAD 2018 - Exclusion to Inclusion

I wanted to write something for GAAD (Global Accessibility Awareness Day) this year to take into account a lot of the work I have been doing over the last 3...

Read more...

Applewatch is lots of useful things …

Applewatch is lots of useful things but also bossy!

When I peer into the mirror I see my right hazel/green eye.  Traveling downwards and towards the left I can see my nose then my mouth.  Following the nose upwards...

Read more...

Happy Haptics

Happy Haptics

How is it that a few simple vibrations can give you SO VERY MUCH?If you had asked me the same question just a few months ago I would have probably...

Read more...

Counselling - My Rollercoaster of Em…

Counselling - My Rollercoaster of Emotion

I haven’t blogged for a while, but feel this heartfelt blog needs to be written. I had never really considered the sadness, even grieving that happens when somebody you have loved...

Read more...

Applewatch Down Under

Applewatch Down Under

Coming to the end of the school year, I have realised how much I rely on my apple watch. The apple watch has given me so much support that has...

Read more...

Charlotte's Applewatch

Charlotte's Applewatch

I was aged 14 when I was told I had Ushers Syndrome Type 2. I was devastated and my dreams for the future were gone in a single moment. Being...

Read more...

Usher Awareness Weekend and Workshop…

Usher Awareness Weekend and Workshop 2017

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

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…

Applewatch, I won't leave home without it

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…

September's Skydive/ Now November Skydive

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

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…

Applewatch, Cochlear Implant for Usher Syndrome type 1

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

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

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 - E…

ReSound LiNX² to ReSound LiNX3D - End User Review

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

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…

Is the NHS listening?  Usher Syndrome, when you no longer hear with your eyes!

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

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

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…

Mario's day to day life with Usher Syndrome

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?

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

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…

Usher Syndrome / Christmas Challenges

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…

A toolkit to enable deafblind to access the world

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

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…

Singapore Airlines a Very Unpleasant Experience!

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!

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

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 …

University: To Listen, to Learn, to Understand!

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

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 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

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

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

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

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 …

Molly Addressing Accessibility with British Airways

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

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…

Applewatch for Award Winning Paraclimber John Churcher

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…

Safe and Secure with Accessible Ring Video Doorbell

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…

Global Accessibility Awareness Day 2016

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…

Learning from each other - 'In it Together @ W Midlands'

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…

Ready to meet others with Usher Syndrome

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

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

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

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 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

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…

When a Picture is more than a Picture

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 …

Applewatch Awesome but Hearing Aids Disappoint

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...