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Items filtered by date: October 2019

Saturday, 26 October 2019 11:28

Sometimes ignorance is bliss!

I’m on the train home after a long day 3 trains and a 3 hour journey . I was just about first on so I placed my rucksack on the seat with my harness over it and put Frankie on the floor under the seat . I then thought I heard a gent mutter something under his breath so I tuned my aids in on the outdoor setting and sure enough he was. If he had only had the decency to ask I would have gladly given up my seat for him or his wife. There was no need to call me under his breath. I was dying to say something but sometimes somethings are better not said. I guess I got the last laugh. 

Sunday, 20 October 2019 11:27

A little time to reflect

Today I’m feeling a bit washed out it’s been an exciting emotional but most of all a life changing week. 

I decided to chill out and take the dogs up the big hill.  It’s about 4 miles through the woods and dams with stunning views. Today I found myself taking a lot longer than normal as it suddenly hit me that I could hear pitch perfect silence at the bottom of the hill, there was no muffled white noise or whistling, something that had become the norm with my standard NHS hearing aids, not even the constant irritation of wind whistling through my ears.  In that moment I realised just how difficult hearing had become with all those unwanted sounds.  That clear silence literally was golden.  As I walked on I could hear aeroplanes approaching the flight path into Glasgow airport some 5 miles away . The clarity that I could hear aeroplanes before I could possibly see then, I was blown away. 

As I began walking again I quickly realised I had a better connection with the dogs too, I could hear them even though I couldn’t see them as they enjoyed their free run. 

As I was walking I noticed I could also hear my heavy feet trudging in the mud, this brought a smile to my face . I continued to walk poking my cane step by step grinning. I took my finger off the pulse, a lapse in concentration as I engulfed myself in the joy of the sounds of the woods , it went from light to dark in the woods not a great thing with Usher Syndrome/Rp (Night blindness).  I found myself With 2 dogs running around and as I stepped forward in the dark I ended up knee deep in water in a ditch!  I didn’t even attempt to scramble out but took the time to listen to the sounds of the water running past my boots. It sounds stupid but it what such a joy.

As we approached the bottom of the hill in the dark silence I suddenly heard a lone bird singing.  I stood still for about 5 minutes listening to it’s glorious chorus, I had never heard any of these sounds!

Boy what a day you really don’t realise what you’re missing. 

Thank you so much to the Molly Watt Trust and GN Hearing

Having Usher Syndrome (deafblind) is beyond challenging.  As I write there is nothing to enhance my sight, though I do have my guidedog Frankie and also a cane to help me get around.  As my sight loss deteriorated I had to rely more and more on hearing with hearing aids.  As most living with Usher Syndrome will confirm, losing sight makes you feel more blind as we can no longer use the usual visual strategies to obtain information.  Hearing aids become so much more important.  Before I was registered blind and wore hearing aids I might hear a noise and be able to look around to find the source of the sound, however when you can only see through a straw hole and then only in good lighting conditions looking around to find sound is not an option in fact it is incredibly dangerous.  For instance with my old hearing aids I might hear a muffled siren sound, a sound of danger but I wouldn’t know where it was coming from and I could be in serious danger or worse I could use serious danger. The NHS hearing aids I had been wearing did not give me the confidence I’m all of a sudden experiencing. If technology can be so enabling I’d suggest everybody with Usher Syndrome should have them!

So here I am a couple of days since being fitted with my GN Hearing LiNX Quattro smart hearing aids and I’m still very much overjoyed by these amazing aids. Today I noticed a few things quite different as I walked with my guidedog in harness. I was so much more aware of traffic noise especially from behind me.  As a deafblind guide dog owner this is incredibly reassuring. Later I was working in my shed, Lyn, my wife to be, shouted only once to let me know my lunch was ready.  As I popped my head round the door I scanned around to notice her  putting her shoes on to come get me, like she usually would, knowing I wouldn’t have heard her.  I cannot tell you how surprised she was as she usually has to come get me! 

Another thing was today, I was fiddling with the TV and hearing aid app settings and have gone from volume 24 on TV to volume 8 to 10 and can hear every word.  In fact I’m currently sitting in the kitchen writing this and can hear every word from the tv in the living room, all so new for me. There a couple of things I think I will need to adjust to my taste and probably re-adjust again as I get used to this new clarity in hearing and appreciating sound.  I’m going to try a different size ear dome in my left ear as it doesn’t feel right, however the dome in my right is as perfect as it can be . Domes do feel different as for the first time s a hearing aid user most of my ear is not covered, will take a bit of getting used to.  Molly says to persist, it took her a little while. The second thing is I will need to consider is something that enables me handsfree use of my iPhone as I feel I need this when working guide dog Frankie who is fairly newly qualified so I do need both hands for maximum control at the moment. 

After some research I’ve found GN Hearing do a multi mic and also a clip which could be the answer.  I cannot tell you how much I am loving these smart hearing aids.  I have followed Molly Watt’s journey with ReSound LiNX hearing aids over the past years and seen how they have transformed her life but until getting my own I could never have imagined just how life changing they are.

I am so grateful to Molly Watt Trust and their supporters GN Hearing and Hearing Clinic Glasgow.

Monday, 14 October 2019 19:47

Ultimately we can all be winners

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, 01 October 2019 16:20

Meet Colin

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. 

Usher Syndrome began to take over

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. 

Making adjustments

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 LiNX Quattro smart hearing aids on 16 November 2019.

Follow his story here.

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