Hi folks I hope you are all well and keeping your spirits up.
I thought I’d write an update on my experience wearing Linx Quattro hearing aids from Gn Resound for just over a year. Donated by the Molly Watt Trust in collaboration with GN Hearing and The Hearing Clinic, Glasgow.
I was the first person to be asked to take part in a very important and necessary project to acknowledge the real hearing aid need, over and above deafness alone for those living with deafblindness. I have Usher Syndrome type 3 which is incredibly challenging.
I am now living with a severe to profound hearing loss and around just 3 degrees of central vision, no peripheral vision and total night blindness.
Usher Type 3 is different from both Type 1 and Type 2 and the rarest, it really hits home later in life.
I went through my teenage years ok but noticed something with my vision was wrong at around 21 years old. I’m sure you’ll appreciate I only see through my eyes and presumed nobody sees in the dark, I didn’t have any idea I couldn’t see because I had a condition causing night blindness!
My deafness came later.
I remember at about 28 years old I applied for a very good job at a nuclear plant working in the turbine hall . There was over 800 applicants and I was told the job was mine, however, after a medical I was told I had failed due to my hearing loss. You could’ve knocked me down with a feather!
So back to reality it was one of the many kicks in the teeth that people with Usher often deal with!
I progressed with life, had to work really hard even set up a couple of businesses along the way but at the age of 45 I reluctantly had to admit defeat. By now my eye sight so bad I couldn’t even find my way to the bus stop on a winters night!
I applied for a guide dog and got the result to my genetic testing which took a while but came back that I have Usher Syndrome Type 3, I was at this time told I needed a hearing check up! My hearing quickly went down hill from mild to moderate to severe now I’m tipping severe to profound.
To date there is nothing that can enhance my blindness accept to use assistive technology where I can, however options for the deaf or blind don’t always fit for deafblind people, all too often we have to muddle through either as a blind person person with deafness of a deaf person living blindness rather than seeing the bigger picture!
I’ve found in my experience I need to continuously adjust and try to stay ahead of the curve just to live my life. I’ve gone from cane to guide dog to specialised wrap around glasses to multiple hearing aid types.
So why is the very best available access to sound so important to somebody deafblind like myself?
Enablement to access sound, not just to hear but to hear so well you can rely on your hearing to keep you safe and inclusive.
Struggling to get by isn’t ok when there is tech to make life so much more doable.
I feel very privileged to be the first person chosen as part of an important and, excuse the pun ‘eye opening’ project being run by the Molly Watt Trust with the support of GN Hearing and in my case The Hearing Clinic, Glasgow.
The project is to demonstrate the additional challenges of people deafblind over and above deaf or blind and the absolute need for us to access the very best in hearing aid technology.
Molly Watt Trust collaborated with GN Hearing and Chris Stone at The Hearing Clinic to enable me to be fitted with Resound LinxQuattro smart hearing aids.
The day I was fitted with my hearing aids I learnt more about my hearing than I had ever learnt in my years of wearing hearing aids and to say I was blown away by my initial experiences of sound really is an understatement and here I an a year on and life has never sounded or been better even through this awful pandemic.
I have blogged about my experiences but been quiet as little happening with the many lockdowns that have been in place however what I have done is take the time to reflect on what smart hearing gives me.
I can now hear traffic when I’m out with my guide dog, I hear 360 degrees around me which when you consider I only have 3 degrees of central vision. To say my hearing compensates for my blindness, I think the numbers say it all!
I feel safe, my confidence and ability to get around hugely enhanced.
Throughout lockdown I’ve been out every day rain hail or shine on many walks, fully appreciating the noises of nature, the different birds singing. It’s also the simple things too like listening to songs or being able to hear a mobile phone conversation.
I am one of many people who really need the very best in smart hearing aid technology which is why they need to be made available to the deafblind community.
Unfortunately at this time Resound Linx Quattro are not available on the NHS which is madness when considering the positives they bring to my relatively small community
Yes they appear expensive initially however when you look further ahead - enablement to get out and about without fear of danger, when you’re able to work, access telephone calls, be inclusive, live your life and not feel the isolation often attached to Usher Syndrome and all the problems attached to it of which mental health is often a big part. When you consider these things are these hearing aids really so expensive? I think they would save huge amounts in financial support for many. Financial independence is beneficial to all.
Over the years I have spoken with numerous audiologists who see best available hearing aid tech as the best option for me as they will enhance my hearing for as long as is possible, and in doing so compensate a little for my blindness until the possibility that I may require cochlear implants, something I hope doesn’t become necessary, however should it become my only option the NHS would fund this at a cost exceeding £50k plus and yet won’t provide top quality hearing aids at a fraction of the cost - WHY?
Please help us on our quest if we don’t shout out we will not be heard!
If you want to help or make a donation so someone else could get the amazing benefit of these wonderful hearing aids which do change life’s take it from me as I know, then please contact www.molly-watt-trust.org .
Together we will change life’s for the better.
For now I’m thankful to the Molly Watt Trust, GN Hearing and The Hearing Clinic and hopeful Molly Watt Trust can continue to work with GN Hearing and help others like myself.
Ok so finally I can write my first Resound One review.
On 3 September I was fitted with my new hearing aids. For me it always takes a good few weeks for my brain to embrace new hearing aids.
As many of you will know I have been on a smart hearing aid journey with GN Hearing for over 5 years now.
In that 5 years I have experienced a revolution in hearing and sound enablement that has changed my life.
As I’ve waved goodbye to most of my useful sight I have benefitted from the invaluable gift of sound.
As a creative person I’d describe hearing with Resound One like peeling an onion, the more you peel the deeper you go and the more you might cry but tears of happiness and the artistic person in me describes the experience as hearing in colours, just about the entire colour palette.
Resound Ones together with the ability the app provides for change/variation in different environments have provided a new clarity in layers of sound.
A good example of this would be a noisy outside environment (in other words a nightmare situation for a deaf person, even worse for somebody deafblind) - there is ongoing building work near where I live, lots of drilling, banging, thumping sounds and yes I can identify those sounds now, something I would never have identified some years ago, I can now thankfully hear all that racket as background noise and on walking past I can hear builders chatting and I know from what direction those voices are coming but I cannot see the builders - they swear a lot!
When I walk with my guidedog at night I am very comforted and feel safer knowing I can hear what is going on around me as I cannot see a thing, the joys of Usher Syndrome.
It’s been a strange year for us all but I have taken the time through the first lockdown to really appreciate the gift of hearing, this was with LiNXQuattro. Closing my eyes in the summertime I experienced silence, only interrupted by bird song, I was surprised to realise all birds sound different, yes I know, it took me until I was 26 years old to appreciate that!
More recently I was struggling with a migraine, usually I’d retreat for peace and quiet and remove my hearing aids, on this occasion I laid on my bed listening to the rain fall and the wind whistling around outside my window, it was so peaceful, one of the most relaxing things I’d heard, quite therapeutic and unbelievably for me I fell asleep wearing my Resound One hearing aids, I never ever sleep in my hearing aids but just shows what I’m getting from them. Silence when I need it, relaxation when I need it and excellent amplification when I need it. To add to that experience when I woke up the next morning my hearing aids still had enough charge to see me through the rest of the day which really is quite amazing. I cannot tell you how relieved I am to not have to faff around with tiny batteries, anybody living with Usher Syndrome will tell you how challenging they are having little useful vision.
Another thing I have really appreciated now more than ever is that having access to speech and sound has enabled me to continue working remotely. I hear well so well via Bluetooth connection to the various enabling assistive tech I am totally reliant on daily.
It is still early days for me with Resound One smart hearing but I’m sure as life returns to some sort of normality more benefits will emerge, but for now I shall enjoy each and every colour of hearing possible.
Well it’s the year of 2020 everyone!
It certainly has been a time of reflection for me, as a result I wanted to share my last decade in a blog that might provide hope for those living with progressive conditions such as mine. As hard as it can feel there is a future, it will be challenging but hard work and determination can see you through.
I have always hated New Years, I’m that emotional sobber in the corner as midnight strikes!
For me the concept of time is quite terrifying, to be frank I have always tried hard to not look too far forward nor back! However it’s this time of year where you’re forced to think about these things.
And then there’s the people talking about the past DECADE as we walk into the next.. well my mind has been having an inevitable real field day thinking about all those years...
10 years ago, I was 15, had been registered blind a year and it was not long before I was put on the waiting list for a Guidedog. I was at boarding school, where I was tormented for being different - I couldn’t sign British Sign Language, so therefore I was “a sad excuse of a deaf person,” I didn’t look blind so therefore I was “pretending,” I had both pupils and teachers grind me further into the ground daily. All I wanted was to be like everyone else, to have no worries besides my GCSEs - not the worry of not being able to actually see enough to read them let alone sit the exams and pass.
At 15 I was put on extremely strong medication to try and rectify a secondary eye condition (Cystoid Macular Oedema,) in the past decade I was on these twice for between 6-8 months. Both times I went from an average size 8/10 to a size 4/6. My mental distress was at the brink and I’d spend most nights crying in pain. The medication never worked. I even had injections and eye drops to try and save my failing central vision - none of which worked. All this while I was at a school who to be quite honest, didn’t want me there.
I had 5 degrees vision left. (Thankfully it’s been stable since.)
Fast forward a few years, I lost friends I gained friends I found the college who restored my faith in humanity... I found *Molly* again. I have Strode college in Egham Surrey to thank for that. I’ll always be eternally grateful for the teachers, the support and of course the life long friends I made there.
Leaving college I proved the little doubtful molly I had inside me that I WAS worthy of succeeding, I even got into university. Sadly university wasn’t to be even after my tireless battle with the authorities to gain the support I absolutely deserved.
At 20 I got a job at Apple where I worked as a specialist and these guys, I’ll always thank for seeing my true value. I found my niche - technology! The ever impactful tech that had gotten me that far and I hadn’t actively realised it until then.
My confidence built up and I built a field of contacts, I bought my first applewatch and wrote a blog that went viral and literally changed my life.
After the applewatch blog I made contact with GN Hearing who's smart hearing aid technology would go on to enhance my life. GN produced the first hearing aids completely compatible with applewatch and iphone meaning I had the a pretty enabling awesome accessibility toolkit. My confidence was high and as a reult I left apple to persue a self employed journey in accessibility, web and app design and usability.
My first dear Guidedog Unis who had come into my life when I was 16 years old was forced to retire early, saying goodbye was to date one of the hardest things I’ve had to do. Thankfully her forever home is with a good family friend and she is now loving a happy retirement.
My second guidedog the beuatiful little Bella aka Welly trotted into my life and has been instrumental in my life since. Thanks to that poppet, I can earn a living and do so safely and with genuine happiness having my little best friend by my side at all times.
I have been able to work with massive companies like Apple (HQ,) LinkedIn, NHS Digital, Spotify, ASOS - the list goes on.
I started working with the amazing guys at Sigma - they too, have been amazing in contributing to my growth in independence, knowledge and confidence.
I have travelled the world, travelled europe delivering keynote presentations and meeting amazing people. Making memories ?
And here I am, I am the person I’ve grown into today and well, I'm pretty proud of myself.
Though things as always remain challenging, the past couple of years have been steady upward progress for me.
In 2019 I proved to myself that I could get even *better,* and with my Molly Watt Talks journey have done incredibly well - if I may say so myself! Also as a person, I’ve grown so so much.
I won’t finish saying it’s all been perfect - it’s been awfully hard at times, I still battle with my mental health and spend some days in bed crying at the thought of leaving my house.
That’s life though, and never be afraid to sit a day out here and there - it’s not easy being human, learn to give yourself a break and to not feel bad. One thing I learned just in the past year.
My wish list for this next year/decade is to grow, to advocate for others, to travel, to work and meet more awsome people, buy my own home and to see others living with my Usher Syndrome thrive.
So before I sign off I want to thank YOU all for still being here - I see you! Not literally obviously, I am blind (heh) you’re so very appreciated.
May we all continue to grow, and learn. Here’s to the next 10 years...
Do you have a year plan, a ten year plan or a wish list? If you do please consider sharing, write us a blog we can share and lets make these things happen.
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 said how I didn’t understand them.
Well, that was before I was fortunate enough to receive a Series 1, 42mm Apple Watch from the charity The Molly Watt Trust This was a piece of accessible technology I would never have been in a position to justify buying; even though I have seen the benefits others have gained from it.
So I took a chance, I applied to the charities project and crossed everything!The Apple Watch arrived at the end of November. And after I plucked up the courage to open up the box it was like love at first sight! (If such a thing can happen with an inanimate object like a watch!)
The first fun was setting the Watch face. Having previously had a Fitbit Surge I thought this would be easy...... it wasn’t! That’s a bit of a fib, setting the Watch face was easy it was rather trying to decide on what ‘complications’ I wanted to be able to have for easy access on the Watch face that was the difficult part. And it took just over a week to get the right mix, that I have continued to use ever since!
Since wearing hearing aids in 2017 I am no longer able to wear in ear headphones, this posed a huge issue for me as an iPhone user who relies heavily on Apple maps and google maps to help support me to keep more independence. Walking with my phone out in my hand wasn’t exactly safe either.
This is the one feature I was really excited about trying out for myself on the watch. The ability to set a route on my phone in apple maps and then have the haptic (vibrations) go on my wrist to alert me to an instruction.
It took some getting used to, and if I am honest I tend to make use of my remaining sight to look at the instruction, but I am learning to be more trusting of it.
While my phone stays safely away in my pocket or bag.
Another feature I have found incredibly useful is text messaging. Yes I can use my phone for most of my day to day messages (with the added support of zoom).
But if I am out and about (or even sat in a loud, busy venue) I can quickly scroll down to a pre-set message that simply says “struggling here”. This I find is enough to help raise the alert that I am not finding things easy.
This works particularly well with my friends who also have an Apple Watch, but for those who don’t, but who can quickly glance at their phones I am quickly able to find reassurance...... Or in the case of the other day; I am able to alert my friends that I have got lost on the way back to the table after going to the toilet (the waitress had kindly shown me where they were)
For me, the feeling of being safe in my surroundings is key; whether this is somewhere on my own, somewhere new or somewhere ‘different’ has always been important to me. As my sight deteriorated this became even more important. But when my hearing also started to fail me; I worried that I would loose myself with it.
In these past four months, I have felt like I have a new lease on life.
And I really do believe this is down to the support I have benefitted from from The Molly Watt Trust and The Apple Watch Project.
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 faced with the bleak reality of slowly losing your sight would be hard for anyone, let alone a young teenager already struggling with typical teenage problems. As the years went by with the emotional rollercoaster of being registered visually impaired at 16 and then being registered as legally blind at age 19, I learnt how to be more optimistic as I grew tired of wallowing in self-pity and not taking opportunities while I still could see. I learnt more and more about the concept of accessibility and that I wasn’t as limited in my abilities as I once thought. I became more aware of the importance of accessibility to people like me, I got frustrated at the lack of it even in today’s modern era.
I have always been a fan of Apple products due to their settings, a whole subsection dedicated to accessibility with amazing features such as Magnifier, larger and bolder text and specific volume controls for hearing aids. Since the Molly Watt Trust has kindly given me an Apple iWatch Series 1, I have taken advantage of its array of features which has already made certain aspects in my day to day life so much easier. I recently took up running and it is much more convenient using my Apple iWatch which has a fitness activity app which helps me record my daily activity. If I have important incoming calls or texts when I’m out and about or running, then I can answer from my iWatch rather than getting out my iPhone which could easily be dropped. One of my favourite features would be the Extra-Large Watch Face which make it easier for users with low vision to see the time and means I can quickly glance at it when I am on the move rather than getting out my phone and squinting for the time.
Due to the Bluetooth connectivity between my iPhone and my iWatch, I can leave my iPhone charging and still go about my day with my iWatch as my calls and messages will also appear on my iWatch’s screen and I can answer them accordingly. Apple iWatch also includes a range of settings to meet the needs of people with a wide variety of sight loss not just RP. These includes Zoom, Grayscale, Reduce Transparency, Mono Audio and much more. These settings can also be controlled and altered through the Apple iWatch iPhone app.
The only downside with the iWatch is that it can drain a lot of battery life from my iPhone which means I have to charge both my iPhone and iWatch overnight but aside from that I think Apple has really pushed the boundaries of accessibility by designing their products to meet the needs of visually impaired users, the Apple iWatch Series 1 has ticked all the boxes for me.
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 would enhance my life tremendously.Setting the watch up was easy, even with my limited vision and it connected to my Iphone easily too. I was so excited , it felt like it was my Birthday or Christmas.
I had just had surgery for a new cochlear implant after being depressed for many years, the applewatch came at a time of positivity for me, a time where I had decided I actually did need an implant to enhance my life and give me more independence, the applewatch was a real bonus.
The applewatch enables me to feel vibrations on my wrist if anyone texts me, I can now access all notifications, which is so much easier for me as I often don't have my iphone in my hand.
My mum panics if she can't get hold of me , she likes to know I am ok , safe and sound !! I have now had my applewatch about 3 months , besides the easy set up to iphone it also connects to my cochlear implant via Bluetooth. I experienced music for the very first time, it was amazing and I listened to different types of music to see what types of music to see what I liked the best. Shazam is a really good app because if I hear music I like but I don't know what it is then Shazam tells me and I can then download the song. It really helps me because I can feel the vibrations on my wrist, like an alarm.
I don't like to put my phone under my pillow or cushion as this can be dangerous but with the watch on my wrist I can feel any vibrations directly to my skin and it alerts me quickly. Because of my limited vision I often walk into lamposts or barriers or poles, especially if I have my phone in my hand while I am looking at maps and directions, however, my applewatch has made this much easier for me because now I just look at my wrist and I don't need to have the phone in my hand. I can check my phone through my applewatch without having to put my hand in my pocket to get my phone.
My new applewatch really helps with navigation and this will be even better when I get my guide dog as I won't have a spare hand for my phone.
I use the activity app to see how many steps and what distance I have covered, this helps with my wellbeing and it is much easier being on my wrist rather than on my phone.
Applewatch has really helped change my lifestyle for positive reasons, I worry sometimes when I am out on the streets , I am really independent but can't help but be a bit anxious on the streets with people stealing phones, applewatch means I can leave my iphone safely in my pocket, I feel much safer. I use it to check the weather too.
The TfL (transport for London app) and train line app is amazing , I can look at my watch and know what time my bus is coming , I can see any cancellations or delays, this is such a help as I can't hear announcements made by bus drivers or on platforms or bus stations.
My mum and my brother text me a lot , they worry about me , my mum panics if she can't get hold of me and I will see like 5 or 8 missed face-time calls on my phone, but with the Apple Watch I know straight away if they have texted me. I can adjust the vibrations and Taptics which is great, so if I'm chilling on my sofa and maybe tired the vibration can be changed to tapping on the wrist to feel it more.
There are so many exciting apps to try, the next one will be Uber. I often travel across London so if I ever get stuck I can use the uber app as I cannot phone and order a taxi.
I absolutely love my football , I can't wait for the season to start in a few weeks, one of the apps for the applewatch is to keep up with football scores and statistics of the match, this will help me a lot, as when I go to football it is very busy and not lit very well, so will save me getting my phone out and I can see all match scores and the latest football news on my watch. I am so grateful for this gift from the Molly Watt Trust.
I feel I would be lost without mine now.
I would recommend Molly Watt Trust to anyone with Usher Syndrome, this small charity is a great help to those with Ushers, not just for assistive technologies they fund but also for providing support, information and for bringing people with Usher together.
Thank you MWT
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 my needs had a huge part to do with the way I felt.
Having been born severely deaf and coping well with hearing aids and my daily support, having a service dog of any kind had never entered my mind, why would it?
However, at 12 I was diagnosed with Usher Syndrome meaning I was going from deaf to deafblind and along with that diagnosis came a whole multitude of change.
Unis was a huge part of that change.
I loved her the moment I met her but it took me along time to get my head around having her.
The fact that deafblindness is a hidden condition meant I had been able to hide my condition if I chose to and back then I chose to more often than not, after all I just wanted to appear to be like everybody else!
As beautiful as Unis was and is she made me stick out when it was the very last thing I really wanted.
Behind closed doors she was my everything, she understood me more than anybody, she was always there for me, she never doubted me accept on the occasions I refused to take her out with me - stupidly, back then I would rather fall over and hurt myself than be seen safe and sound with my guidedog.
I look back now and can see my being able to accept myself had been made harder by the thoughtless people around me in school. They made my life miserable by offering no encouragement or reassurances that I was ok, that I was doing the right thing in having and using Unis as my sight diminished, in actual fact they went out of their way to suggest I did not need Unis and that I should return her. Without a doubt these were the attitudes that made my life all the more challenging.
That was a time in my life I look back on rarely accept to say this disgraceful treatment of vulnerable children should never ever take place and if in my work I can make that never happen again my suffering was not for nothing.
Unis saw me through those hideous times, she knew how distressing I was finding life, she would sit at my side leaning on me so I knew she was close. In my time of denial and feelings of depression and isolation she has been with me.
On days when I feel anxious she has been there to calm me down. Snuggling up to her and stroking her beautiful silky fur has been assuring and also enabling.
Caring for Unis was initially overwhelming but doing so strengthened our bond.
I am never alone with Unis, she understands me better than anybody. Unis knows when I am at my most anxious, she has been calming and encouraging and has made me go that extra mile on many occasions.
Unis has been more than my eyes over the 6 years I have had her, she has been my best friend, even my therapy, she has kept me sane through the most difficult times.
Sadly Unis has found working with me difficult over the last year and we have together reached the heartbreaking decision that she should retire and enjoy her retirement rather than struggle on looking after me now she has developed anxieties of her own.
Naturally I am devastated and hope my family can keep her as a pet when my new match is found.
Unis will always be special to me, we have been through so much together including some of the most unpleasant experiences in my life and for that I cannot thank her enough.
Even though she cannot deal with the pressures life as a guide dog brings she is still always here for me, she helps keep me calm and focussed on the days I don't feel I want to leave the house. She knows I care more for her than anything and that I need to give her the same consideration and that means having to go out when I really don’t want to and strange as it might sound once I get out I always feel so much better.
Without Unis on those bad days I might have no need to leave the house and my mental health would absolutely suffer.
Before https://therapypet.org I would not call myself a ‘dog person’ in actual fact as a little girl I was quite afraid of dogs. My parents bought a dog to try and help me over my fear, I accepted the dog but had little to do with her, however, when she died I was devastated and when the next family pet dog was brought home, the most gorgeous and fun boxer dog called Dexter I grew to love him, he grew to be big and bouncy but also incredibly affectionate and protective of us all. Without Dexter I would never have opted for a guide dog and in effect missed out on all the positives they bring, not just in guiding me but in everything she has given me over the years.
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 also got to re-visit my friends in the Accessibility Team at Apple Cupertino and I got to learn so much more.
I did a short informal talk about how and what accessibility features I use to some of the team, some I have met before and to a few new faces, we also discussed the new apple accessibility website.
I was able to speak about features I like, things I don’t and to pass on some great ideas from those around me, in the hope we can all do our bit to make things even better not just for the Usher Syndrome community but for everybody. If it works for minority groups it will work for the majority.
We then had a great questions and answers session. I love this part of my work, the more curious people are the better the understanding of need and the better result for the end user.
Apple products have enabled me to do so much so far. I am proud to be a small voice that gets listened to and am very grateful of the time spent with the team in Cupertino.
I was delighted to speak in great detail about the importance of ‘iPhone ready’ hearing aids and what that can mean to the deafblind, deaf, hearing impaired, hard of hearing - whatever term used, this connectivity is fantastic.
Forty four different types of hearing aid now ‘work’ with iPhone which is awesome. The one question I didn’t ask and which I wish I had is how many of the forty four are also ‘Applewatch ready’ as that really is the icing on the cake for the deafblind, with it’s prominent haptic abilities (vibration alerts on the wrist) and what for me make life a little safer and are very reassuring. I love the fact my Linx2 have direct connectivity to all of my apple products including applewatch.
This whole conversation really got me thinking about how amazing my hearing aids really are having direct that connectivity and what it all means to me.
I think knowing just how much I benefit from these things makes me feel really frustrated for the many people I know who could also benefit as much from my set up / toolkit.
The more I looked at the list of forty four the more annoyed I became.
The main reason being, the number one brand provided by NHS England does not have even one model, yes ‘NOT ONE MODEL’ on that list of forty four meaning millions and millions are missing out not just on best technology but on enablement and inclusion to carry out so much more than these now very outdated and out performed hearing aids.
Neck loops and faffing around are simply not good enough anymore, particularly as incredible assistive technology exists with built in connectivity and has done so for many years now.
Neck loops are fiddly and easily misplaced by the deafblind. Many don’t offer direct connectivity and are anything but inclusive and most have to self fund these extras too, also radio aids to assist with hearing in more challenging situations like meetings, classrooms, offices and the various other places not environmentally friendly for hearing aids, more cost and often to the individual.
Even with these things in place it is often not enough and then comes more expense for Government Services (Access to Work) who will need to fund STTR each and every time to enable accessibility.
How complicated is this system?
An up to date pair of smart hearing aids is the answer potentially saving a fortune.
NHS England need to think about ROI when providing hearing aids. Something even as simple as being able to use a telephone can give so much more in the way of enablement also employment, resulting in less unemployment, less mental health issues and most importantly less isolation.
There is no price for confidence so NHS ENGLAND isn't it time you considered how far technology has come, consider all the things it can do and enable your patients.
It is a fact, confirmed to me by my deafblind trained social worker that all deafblind people should be issued with two pairs of hearing aids and two pairs of reading glasses because of the impact of dual sensory loss and the complete reliance on assistive technologies. This is detailed in my own personal Deafblind Assessment.
Sadly it seems few Health Authorities are aware or do they simply just ‘turn a blind eye or a deaf ear?’ Many in my position do not have two pairs of hearing aids and even worse often have hearing aids that are years old, denying them the opportunities to connect with modern enabling assistive technology, this really is not acceptable.
Perhaps when considering that each and every deafblind hearing aid user should have two pairs of hearing aids, instead provide one pair of modern smart aids enabling an exceptional hearing experience, also enabling locational sounds, access to speech near and far, to telephones, to access not just the sounds to stay safe but to understand them, to hear inside what is happening outside, to adjust and understand environment, also to enable control of hearing aids via apps, all of these things all assist with the challenges of deafblindness. Simply insist the hearing aids are insured.
I mentioned the add ons that dated hearing aids require like neckloops, radio aids. My hearing aids need neither, sound is streamed through the outstanding connectivity from iPhone to hearing aids and my iPhone even acts as a microphone.
I was told some months ago by an audiologist the reason people with deafblindness who choose to have cochlear implants will usually get funding for two at a cost far exceeding that of top of the range hearing aids is to enable locational sounds for safety - shouldn't this be the same for hearing aid users?
Best access to sound for safety reasons should be all, not based on which type of hearing aid required. Safety is safety.
Outside can be a very frightening place when unable see or hear danger and not just for the deafblind person but also a potential danger to others.
I used standard issued NHS hearing aids from 18 months old until I was almost 21years old, I could access sound, I learnt to speak using those hearing aids and benefitted from all visual clues.
I was very typical of a deaf person, I coped ok. However since my Usher Syndrome diagnosis at 12 years old and being registered blind at 14 years old I felt more deaf, I struggled, particularly with tiredness. Back then I didn't really know why. I was told ‘Usher Syndrome is exhausting!’.
Today it is obvious, I could no longer lipread very well or benefit from facial gesture, from body language or from the many visual clues deaf people use. I had to completely rely on my hearing aids and they just were not good enough.
Sadly there are many struggling along just like I did but what makes it even worse is they are now much more aware of what ‘Smart hearing aids” can offer they just cannot access them!
It is time for NHS England to not just be aware of the everyday challenges to those living with deafblindness, the real impact blindness has on somebody already deaf, how isolating a condition it is then it becomes clear to see that each person should have access to the very best in hearing aid technology.
Helen Keller’s quote from all those years ago ‘Blindness separates people from things, deafness separates from people’ is very true, however best technology can now not just ease isolation but enable inclusion.
I feel very privileged to have the very best in hearing aid technology, it enables me to be confident in my work. I also feel very passionate that others like myself should also have access to the best.
My smart hearing aids are more than just hearing aids they are literally my ‘Linx2Life’.
Smart hearing aids and apple products are accessibility tools for people like myself, they are not flashy gadgets they are essential for the everyday challenges faced.
I'd like this post to reach Goverment, to be read by NHS England, Access to Work, Social Workers working with the deafblind, Audiologists with deafblind patients, Occupational Therapists working with the deafblind and to anybody else I have missed in the care sector.
We have to make life inclusive.
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 quite a year, a year that I have experienced some amazing things.
I was born deaf so very used to wearing hearing aids and I coped pretty well. Great support as a child, I could speak well and on the whole was doing pretty well at school, I accepted deafness, I knew no different. However things changed upon my usher diagnosis.
As my sight went I felt as though my hearing had deteriorated too, thankfully this was not the case but in actual fact I had lost my ability to hear with my eyes. I couldn't lipread, i couldn't see body language or gesture properly. I visited audiology to be told my hearing was stable so I continued to use the same hearing aids, I then realised how much I had relied upon my vision to help me hear. I could no longer see much and I was really struggling to hear and there I was expected to just get on with it.
To say it was difficult is an understatement so I isolated myself, the world was a frightening place when you cannot see or hear.
I look back now and it makes me angry to think this is so unnecessary knowing so much more about the available enabling technology.
Had I been fitted with Linx2 when I was diagnosed with Usher Syndrome my blindness would not have impacted so heavily upon me. The clarity of these hearing aids, their ability to enable spatial awareness, to have several settings changeable depending on environment instead of feeling more deaf and more isolated than I had ever felt as a deaf person I would have felt more confident in my ability to hear and to trust my hearing.
Linx2 bluetooth connectivity has enabled me to use a telephone for the first time in my life and to hear clearly, I was 20 years old before I could make a phone call with confidence and to hear the voices of my family properly, things most people take for granted.
I can now localise, I know where sounds come from. Before I was blind I would hear sound and often need to look all around to find the source, looking all around is no longer an option with only 5 degrees of sight left so this feature is priceless. I can be out and about with guide dog Unis and hear the sounds of danger, I can also hear the sounds I've missed over the years, I can hear birds sing and dogs bark, I can hear aeroplanes and the more important things I can hear voices, the voices of my family so clearly. I can hear new tones, I hear music, I can hear mood and picture atmospheres and so much more.
Blind people rely on their hearing and deaf people on their sight and yet deafblind people like myself are expected to "make do" to get by. As if life isn't tough enough with dual sensory impairment, surely we should be entitled to technology that will enhance our lives, to enable us to get on as best we can.
Linx2 enable me to access so much more. With full connectivity to my iPhone and applewatch I can now access lots of useful apps developed to assist the blind, something I could not do with my old hearing aids.
For me blindness is the most challenging part of my condition, there is no cure for it, it affects how I personally access information and also my mobility.
There is no cure for my deafness either but the hearing aid technology I use has been life changing so not the issue it was for me.
My interest in assistive technology and accessibility heightened on my Usher Syndrome diagnosis. Being only 12 on diagnosis and then registered blind at 14 I had already begun strategising and experimenting with assistive technology as it enabled me to "fit in" as best I could.
I see myself as fortunate to be born at a time when technology was good and am thankful it continues to get better and better, sadly for many accessing the best enabling technology is all too often out of reach financially which is very sad.
In my mind best technology is the only way forward and long term would work out so much more beneficial to all.
More people with Usher Syndrome would have the ability to be active members of society. Able to get out and about with confidence, work in different environments, use a telephone, communicate confidently rather than be home, unemployed often feeling isolated and depressed.
Technology should not be "frightening" to anybody it should be embraced by all it is not just fancy gadgets for people like myself, with other disabilities and for the elderly it is enabling.
I am deafblind, I am 21 years old and technology has given me my life back.
I am hearing with the most amazing technology, technology I'd dearly like for others who would benefit from them. I am able to access lots of information via my iPhone and Applewatch, I am even seeing things with my 5 degrees of vision, things I haven't seen in years via the Ricoh Theta s 360 degree camera. This little camera enables me to take a 360 degree picture which appears on my iPhone screen, I can move the picture around with my finger to see a whole screen of information. A strange experience for me the first time I used it but an amazing experience I can only describe as seeing an atmosphere, zooming in on every area of my screen. It gives me a memory of peripheral vision, something I lost almost 8 years ago, absolutely amazing.
I cannot imagine my life without my trusty MacBook or my iOS products they enabled me to access my education, to reach out to others and to maximise my abilities as a deafblind person and more excitingly these technologies keep improving
I love teaching others how to use the technology I am lucky enough to enjoy, I want others to understand what technology offers and I want those in technology to understand the often unique needs of people with sensory impairment, particularly Usher Syndrome and deafblindness.
Whilst accessible technology is available and amazing it remains that far too many websites are not accessible, even with fantastic technology. This is an area that needs to improve and an area that interests me.
There is no reason why it remains that many educational intranets and government websites are inaccessible. Still many of the most important Social Media platforms are not fully accessible and this needs to change.
I myself was denied my University education and in this day and age this is absolutely not necessary.
It is refreshing to know there is now a Global Accessibility Awareness Day as it must means Accessibility is firmly in the minds of many going forward and this is absolutely good news.
A really is for Accessibility...