Well folks today so far for me has been a real rollercoaster of emotions.
To be honest I’m usually very straight forward and generally a get up and go sort of person, however today it felt very different! Firstly I got up later than normal 10am which is not like me, usually by this time I have done a daily 4 mile walk in the woods with my guide dog Frankie if we are not working. Something I know is good for my all round wellbeing.
Noticing the time I jumped up and headed to the kitchen where Lyn my wife was, she was organising breakfast for me. I certainly wasn’t myself as It had taken me a little while to realise I hadn’t put my LiNX Quattro hearing aids in. I noticed I was only picking up the odd word from Lyn as we tried to piece together a conversation. I then realised that Alexa was playing something in the background, it was simply just a noise! It was at this stage I realised two things, just how deaf I am and also how totally reliant I really am on my new hearing aids. Having worn LiNX Quattro for over 6 months now I have gotten used to hearing music and recognising songs without any problem.
Lyn then got up and walked away bit still talking to me, wearing my new hearing aids I usually hear every word but not today. Something else I noticed was not only have I got used to the sound I access with my hearing aids but so too has my wife! Today I had to asked her to repeat herself several times which she did, apologising that I couldn’t hear her! I soon put my hearing aids in!
We have been busy spring cleaning throughout the lockdown and today we were clearing out the bedside drawers, I came across all my old spare hearing aids , changed batteries cleaned tubes etc , always good as a back up I thought! I took out my LiNX Quattros and popped them in my ears to remind myself of what I used to live with. The sound was horrendous, crackly and as if I’ve got a bad cold and they felt massive!
I was told by my old audiologist that I had the best available equipment, I used to think I had the best equipment and they were good but in truth they don’t come anywhere close to what I have now!
After cleaning out I went for lunch with my wife again at the kitchen table we talked . She knew something was really bothering me. Alexa was playing, I asked Alexa for the volume, she told me volume 3, I could hear every word perfectly wearing my LiNX Quattro, so I asked Lyn what volume was on for me without hearing aids earlier in the day, she said you start to pick up on some sounds at around volume 6, so I put Alexa on Volume 6 and it was far too loud for me, actually uncomfortable for me wearing my LiNX Quattros.
This hit me Square in the face as to just how bad my ushers syndrome type 3 is now and how it really is catching up on me. For those who do not know, Usher Syndrome type 3 is the rarest type and it often means we are born with both hearing and sight and sadly can lose both.
I’m not embarrassed to say this but it’s the first time I’ve ever cried at the harsh reality of deaf-blindness. I feel so damned privileged to have these aids and generally good health. It’s left me thinking very deeply today as to why I’m in this position and how I can help others.
I have a voice I strongly believe I need to shout as loud as I can so that others not able to shout can also be heard.
The deafblind community need the best assistive technology available as standard we should not have to fight tooth and nail for things that truly enhance our lives.
The better the quality the more enhanced and enabled our lives are and the more inclusive we can be.
There is no feeling like independence and the ability to live fulfilled lives.
I know I lose a bit more sight and hearing every year but I strive to be independent as long as I possibly can so I personally strive for the best equipment to help me along on my journey of deafblindness.
Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed.
It remains a condition without a cure. There are variations in level of deafness, in level of blindness, in chosen mode of communication, in chosen method of mobility aid(s).
We all have daily challenges living with deafness and progressive blindness but it doesn’t mean we are incapable of living fulfilled lives.
Since my diagnosis and acceptance of my condition I have learnt lots of things not just about the condition but also about attitudes towards it.
Sadly there is still ignorance surrounding it and also far too much negativity.
Usher Syndrome is a challenge for all living with it, however the challenges vary from person to person.
Communication is an interesting one, age is definitely, in my opinion a big factor.
It is wrong to assume all with a profound hearing loss communicate using sign language. At 24 years old I have met lots of people with usher worldwide and my observation is that the older generation of all usher types with varying levels of deafness are more likely to use sign language to communicate, but there are some younger people still using sign language, that said some do communicate orally too. There must always be consideration of the varying communication types.
The younger generation, our millennials, are much more likely to be oral, though again some do sign. I believe the reason for the change is because hearing aid technology has never been better. Cochlear implants have made an enormous positive difference along with the complete evolution of hearing aids in my lifetime from analogue to digital and more recently the smart hearing aid - yes, assistive technology wins the day.
It is actually technology that is evolving, not Usher Syndrome and we need to embrace it. To really embrace it there needs to be more understanding of needs and what assistive technology is available and the biggest ask is we need funding for real enablement.
Ever considered a pair of smart hearing aids would cost less then the equivalent of somebody being unemployed for a year and that is without considering the health and wellbeing of a person able to be an active part of society, to be included is priceless in my book.
Neither cochlear implant nor hearing aids are a cure for deafness but an amazing aid for listening, hearing and accessing communication and information, but that is only the beginning.
Did you know the *smart hearing aids I wear have bluetooth connectivity to a plethora of mainstream technology. What this means is that sound is streamed directly from my iPhone, applewatch and to my ears, as a result I can now hear and use a telephone which might not sound much to many but when you consider how often help is still only available via the telephone, it shouldn’t be that way but it is. Using a telephone is also very enabling in the workplace.
Being deafblind and able to hear clearly brings access to the many apps that amongst others Microsoft have developed for the blind that can only be accessed aurally, for instance I can point my phone at an object, person, environment and the app (Seeing AI) will describe it to me. This enables me to be more independent to not be fearful of not having somebody to ask when I am out and about, on that note I should mention the importance of directional sound for somebody deafblind. Since wearing smart hearing aids I have benefitted enormously, I can now not only hear a sound, be it speech, a siren, a sound of danger or an alert of any kind I can turn to that sound and act accordingly. I can now rely on my ears to compensate for my eyes, for me this has been the greatest thing I have experienced since losing my sight.
I always thought I had pretty good speech and I did but since wearing smart hearing aids my speech has improved. I hear speech differently, tones and clarity, a sort of warmness I hadn’t experienced before and has made so much difference.
I no longer feel the isolation I used to in what was a pretty silent dark world. Doesn’t everybody deserve that?
For your information:
These two youtube pieces demonstrate the change in my speech - check me out at age 14, excuse dodgy hair and glasses! https://www.youtube.com/watch?v=z8tXf36Qx6E
then compare now, thankfully dodgy hair and glasses gone too https://www.youtube.com/watch?v=Hq6rRQTIoqM - don’t we want this for everybody?
*Smart hearing aids worn LiNXQuattro by GN Hearing
I regularly champion assistive technology, it has changed my life beyond recognition and I want that for all living with Usher Syndrome who can and would without a doubt benefit.
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. My first thought was FANTASTIC for those choosing cochlear implant but the more I thought about it and re-read it the more concerned I have become.
Of course this is really great news for those choosing cochlear implant, great that the criteria has changed making, I assume, application, assessment and presumably funding easier, however what about those of us using hearing aids, isn’t our access to the best available hearing aid technology as important?
I then read this: http://www.hearingreview.com/2019/01/better-hearing-better-living/ and felt compelled to have my say!
I have always advocated for those who wear hearing aids. Having worn them since I was 18 months old they have been my access to the world, to sounds that enabled me to access speech and oralism, also very importantly to access the sounds of danger when combined with visual clues.
My belief is being able to hear opens the door to a whole world of inclusion and independence, that said it isn’t easy. Learning speech takes years and lots of patience and commitment and it is exhausting.
All people born deaf have to learn to listen and understand sounds, not just profoundly and severely deaf but also those with mild and moderate hearing loss who do have similar challenges accessing sound. It is fair to say all deaf people have to work really hard just being themselves!
I have met profoundly deaf people doing well and mildly deaf people struggling. Level of deafness does not always demonstrate need, just some cope better than others. I have in my lifetime been bullied because I am “not deaf enough” the fact is I am deaf enough to need hearing aids, I hear only loud noises without my hearing aids and lipreading these days is out - deafblind is hugely challenging.
Since losing most of my sight I am almost totally reliant on hearing technology to access the world.
I am a hearing aid user, I do not require or want cochlear implants at this stage in my life I cope very well with state of the art smart hearing aid technology, technology that has enabled me to access so much more than I had ever imagined.
I work and have many contacts around the UK working for the NHS and the funding of hearing aids seems to be so complicated I have been unable to get the answers I’m looking for.
I am no expert on these things. I have tried to find out who funds what, it is all so incredibly complicated, NHS Trusts, NHS England, the list goes on, then there is the post code lottery which dictates who gets what hearing aids. Sadly many NHS Trusts have little or no experience of deafblindness and attempt to assume our needs! In short we miss out. It is a fact that the deafblind should be provided with two pairs of hearing aids and two pairs of glasses if appropriate, again this is a postcode lottery, but demonstrates the needs of those with dual sensory impairment do differ considerably. Surely in recognising this why do we not go further and offer the very best in hearing aids as smart hearing aids can and do to a degree compensate for visual impairment.
I rely on my hearing aids more than ever before, they are my link to people, to speech and to education and I don’t just mean school, I mean learning to be a part of society, away from silence and it’s isolation and in my opinion that is where so many problems can begin. The hearing aids currently provided by the NHS can only offer so much, having lost visual clues means they do not meet the needs of the deafblind.
Inappropriate hearing aids can lead to a lack of confidence, a vulnerability and often isolation and depression as blindness sets in.
At 20 years old I was very fortunate to discover GN Hearing and to benefit from “Smart Hearing aids”. In 2014 I was fitted with Resound LiNX2, then LiNX3D and now LiNXQuattro and it is really here that I want to begin:
Smart hearing aids have revolutionised access to sound, they are a real alternate to cochlear implant, they enable choice for those with all levels of deafness and whilst it could be said they are more expensive than the standard NHS hearing aids they are a fraction of the cost of cochlear implant and when considering what they provide for the deafblind they are priceless. I cannot put into words how enriched my access to sound has become. I now hear things I had never heard in my life, as a result I can do so much more. Not only that but my confidence is at an all time high, I can access the world around me.
Smart hearing aids have enabled me to use a telephone, they give me directional sound. They literally help compensate for my vision loss. Directional sound and enriched hearing means I can engage with people, I hear danger and I can live a pretty full life.
I’d really like to know why funding quality hearing aids is such a big issue, the ROI (return on Investment) like cochlear implants is clear, they provide inclusivity not just to sound but to our world.
Living with dual sensory impairment, deafblind is more than challenging and from my view point very frustrating as I know exactly what smart hearing aid technology is available and yet most are denied this because of cost.
In a paragraph at 24 years old I have experienced the evolution of hearing aids, from analogue to digital and now to smart hearing aids resulting in me being able to “Hear more, Do more and Be more” doesn’t everybody deserve that?
Usher Syndrome is the most common cause of congenital deaf blindness, that said according to recent research we are between 1 in 10,000 and 1 in 20,000 so in the scheme of things rare.
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 sounds, if that makes sense!
GN hearing’s assistive technology over the past 3 years has sort of become a part of my DNA, a real part of me, something I wouldn’t want to think about changing and for this very reason it’s almost trickier to begin talking about it. Nevertheless I am going to try and share my recent experiences with the latest GN Hearing re-chargeable additions “LiNXQuattro”.
About a month ago when I was fitted with them https://youtu.be/I7oXcSy9EEA
I was not just excited to be receiving GN’s latest and most innovative smart hearing aids but also excited and curious that the hearing aids I was being fitted with would be the rechargeable version, I know to many excitement wouldn’t be a way of describing “rechargeable hearing aids,” maybe useful or maybe practical but for me being deafblind I was excited - no more fiddly tiny batteries, easily lost, often resulting in no hearing until battery found or shop found to buy spares! As organised as I’d be I’m a girl, I change handbags regularly, have all sorts of things to carry and on occasion that spare pack of batteries I’ve fumbled around for in my bag have had all dead batteries! Leading to frustration, anxiety, sometimes even panic when I’m in an unfamiliar area and “virtually completely deaf” quite frightening.
No more having to pack spare batteries or worrying I’d lose sound whilst out and about - it really is the little things!
Wearing two dead hearing aids would make me feel more deaf than I am without hearing aids at all so I’d even take one aid out to use the tiny bit of residual hearing in an exhausting effort to keep my baby toe in with reality - of course this was ridiculously unreliable because lets face it, I am severely deaf and registered blind I need and totally rely on my hearing aids day in, day out and I can say without question that since being fitted with GN LiNX2 followed by LiNX3D and now LiNXQuattro this incredible technology has compensated in a positive way for my deafblindness more than anything. I’ve said it over and over and cannot stress the importance of this assistive technology it really is the “gamechanger”.
I’m going to begin by comparing my experience of having hearing aids with batteries and moving to rechargeable ones - shoutout to all hearing aid users : You know when you can tell your week is up and the sound quality starts to fade and you hear those beeps indicating you’re in need of a battery change?
That feeling when you change the batteries, that fresh feeling, almost feels like your hearing has improved a kind of ‘fresher!’ hearing (I personally loved a good new pair of batteries, no hearing person could understand that satisfaction but WOW new hearing aid batteries!)
Well, with rechargeable hearing aids, a full, new battery every single day - “fresh,” “clean” just like new hearing aid batteries every day, what a great start. A simple charge takes a relatively short time, I recharge overnight and throughout my waking hours use/stream without a care in the world. I have got into the habit of taking the little charging unit with me but am yet to need it - better safe than sorry until I know exactly what these aids are capable of.
If you’re hearing I can imagine you might be struggling to empathise with this however I just had to mention that it’s a very noticeable improvement with these new babies and a perfect start!
Like previous models these “made for iPhone” smart hearing aids still have the ability to connect the dots between all my accessibility tools - the sound quality streaming has improved making listening to music and taking phone calls so much easier and more enjoyable. I’ve experienced a new kind of sound quality, familiar voices have a different sound, I guess I’d describe as more of a richness, I’m picking up on things like expression of sound, sarcasm, exaggeration, pitch, those sort of things, things I’d never really realised I’d missed!
I love music, all sorts of music and since wearing LiNXQuattro I’ve begun listening more carefully and can pick out different instruments rather than just listening to words - before GN hearing aids I couldn’t decipher either. I used to make up the words and think what I heard was how it was, WRONG. Actually hearing was hard work and I’d rely on visual clues like lip reading and gestures, those days long gone along with my sight, how grateful I am to GN Hearing that I’m more than coping without visual clues.
I tend to use FaceTime to communicate with my friends, they seem to prefer it, not that they are deaf or deafblind, they just seem to be enjoy it more. I can still just about make out their faces, but that said most important to me is the direct stream of sound whilst doing other things (I’ll often rest my phone against something while I’m busy) I can walk around the room and keep busy and talk with my friends as if they are in the room - I’ve never been so productive whilst on the phone before!
The quality and clarity of sound has meant I don’t mishear very often, as a result I feel very confident in conversation not just with friends but with clients on the phone. I can still hear things around me like kettle, the microwave, the toaster - whilst on the phone.
I have often rung my Mum for instructions on something or the other and put the phone down while concentrating on those. The hearing aids feel like an extension of me, they allow me to do more than ever before.
I continue to enjoy the independence to swap and change settings in the changing environments I find myself in. Also to save hearing aid settings for places I visit regularly, it’s also pretty cool that the hearing aids remember settings for saved places.
I’m enjoying life with my rechargeable LiNXQuattro, that “Fresh Battery” feel, the rich way I’m experiencing sound, the seamless direct streaming is priceless, totally enabling.
My work involves lots of speaking and lots of listening at Q&A time which at one time I’d feel a little anxious about but not any more, my ability to access sound and to feel inclusive has had a massive impact on my everyday life, I’m anything but that poor deafblind girl sat in the corner.
My confidence and independence is at an all time high and yes, I rely totally on assistive technology to live my life and of course, rely on my Guidedog for keeping me safe but it has to be said my smart hearing aids are without a doubt the “LiNX to everything”
I’d like to comment on the remote hearing aid repair but accept to say it’s an amazing as my LiNXQuattro are yet to let me down and judging by my previous GN smart hearing aids besides the odd tweak in the early days completely problem free, perfect performance.
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 years and how and why I do it.
Being born deaf and living as a deaf person with NHS hearing aids until I was 12 years old allowed me to adopt lots of coping strategies that saw me through my primary school days. Back then I did not realise my hearing aids were assistive tech, I just wore them so I could hear, so I could be a part of everyday life. Apart from my hearing aids I used a radio aid at school, hated the fact it drew attention to me but looking back my hearing friends were not bothered by it. Considering I didn’t speak too well until I was 6/7 years old I did very well at my local primary school with visits from the teacher of the deaf, a speech therapist and a teaching assistant, deafness is not rare.
My big challenges came when I was diagnosed with Usher Syndrome, deafblindness, a progressive condition with no cure.
I could dwell on all the negative things that happened to me back then like being bullied by staff and pupils at a school for the deaf, being in denial, mental health issues as a result, counselling but actually I want to concentrate on the positives that came from those ugly and unnecessary things.
Nobody was in my shoes, however, strangely many liked to talk for me, tell me what I was thinking and what I needed to do to deal with myself, well, actually NO. I was brought up to speak up about my needs as few people knew much about my condition so there I was speaking up, which at 12 years old is a big deal, sadly few listened!
Determination to make something of myself I initially chose to be a primary school teacher, worked my socks off at College.
I wanted both a career and to make a difference but it wasn’t to be, unfortunately my dear old friend ignorance reared it’s ugly head again and I was denied access to my course by a very highly thought of London University!
So another avenue closed for me, however, the realisation that every step of the way I was excluded was because of my accessibility needs and an unbelievable lack of care or understanding.
What I had not realised was how my coping strategies and desire to be included in society had grown hugely from that deaf child relying on hearing aid technology and assistance from those very experienced with deaf children.
The lack of understanding of deafblind needs had led me to discover the world of assistive technology #techforgood #techforall
Using my faithful MacBook I was accessing the world, something I couldn’t do on a laptop as the accessibility features simply were not there without incredibly expensive software and for me even with it I wasn’t comfortable.
I loved Apple accessibility features right from the start and thankfully for me things got better and better, along came iPhone and then iPad and applewatch all of which I use, each of which have opened up my deafblind world.
To add the icing to my “Deafblind Accessibility Toolkit” today I wear state of the art smart hearing aids made my GN ReSound. I have been very fortunate to have worn LiNX2 which were upgraded to LiNX3D which changed my life beyond all recognition.
I was used to my old NHS Phonak Hearing aids and to be fair whilst I was just deaf they were ok, however, becoming deafblind, losing the ability to use my eyes to lipread, see body gesture, see sign language, hear sounds and although not knowing where they came from I could turn around and look around to find the sound, often sounds of danger - those coping strategies gone so unless somebody close by talking to me on a one to one and in an acoustically appropriate room I would struggle to hear. Life for people with progressive conditions like myself have to deal with ever changing challenges, many of my challenges similar to the ageing process! I blogged about this http://www.mollywatt.com/blog/entry/accessibility-grandad-and-me .
Enter GN ReSound technology. I could now hear well enough to use my iPhone as a phone because of direct streaming, never had I been able to do that confidently with the previous hearing aids. I could hear differently, the voices of those closest to me sounded different, I could hear different tones, a new clarity. Something very new to me and something that blew my mind was directional sound, now not only could I hear better but could localise, I could hear people speaking behind me, I could “earwig” on other peoples conversations and as if that whole new access to sound wasn’t enough those smart hearing aids could be paired to my iPhone, iPad and applewatch enabling me to access directly streamed sounds directly to my ears along with apps many of which are so enabling to somebody like myself. On that note GN ReSound had an app for my smart hearing aids which initially enabled me to adjust my hearing aids further, I could change base and treble, a number of different setting again that I could change depending on the environment I was in and as if that wasn’t simply amazing the next generation LiNX3D enable all of those things and more, now I can remotely report any problem I might have with my hearing aids, my audiologist check my hearing aids and deal with my issue without me having to attend or send them away. Not sure it gets much more awesome than that for somebody deafblind because of course we also have mobility challenges!
Something else that has happened as a result of my wearing these smart hearing aids is the quality of my own voice has improved which is awesome.
I have written extensively about applewatch and it’s importance in my life http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days and today it is something I never want to leave home without.
Today I am using all of this technology, I know I am very fortunate to have this equipment as it has changed my life and resulted in me operating in the fields of accessibility, usability and inclusion.
I want to share my experiences not just of what is available to enable, but how these things can be life changing and life enhancing not to mention bring inclusion to many who do or have felt isolated.
Today I am listened to, I am a regular keynote speaker around the world and in varying fields, I have spoken to some of the biggest in digital and continue to have my say in all things accessible.
I provide accessibility workshops where I use the skills I’ve developed to access the world and these skills can and are used by those involved in developing and designing accessible websites which brings more inclusion but also by those struggling, people like myself, our ageing population in fact accessibility makes life easier for all.
It has become very clear that often those in high places, the decision makers are often unaware of exactly what is available by way of assistive technology and as result millions are missing out, excluded through lack of awareness and this has to change. Knowledge and a return on investment makes complete sense.
I am pretty sure if I did not have access to the assistive technology I use daily I would not be the person I am today, I would not experience my as close to normality as it gets being deafblind. I would not be the confident person I am today, I’d probably be that quiet introverted person struggling to deal with life, mental health problems and zero confidence.
Everyday I thank my lucky stars that my parents taught me to speak up, everyday I know how fortunate I am that I was given access to technology that has changed my life and everyday I’d like to bring positive change, make a difference for others to benefit and to raise awareness of just how enabling digital is for us all.
Lastly for those who take the time to listen and make changes thank you for making life more inclusive.
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.
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 Christmas again, all thanks to the Molly Watt Trust's GlobalGiving Project.
I was chosen as one of the first to trial this idea and wow I'm very thankful!
I Have Usher type 2 so born partially Deaf and now slowly losing my sight due to Retinitis Pigmentosa, that is Usher Syndrome.
I'm pretty much the worst for missing calls or notifications and emails simply because I don't hear the pings and don't see until I check myself usually just before bedtime.
Well since this lovely piece of tech came into my life that is now a thing of the Past....
'Haptic's where have you been all my life?'
So when I first got this all set up, I adjusted the font and display and synced to my IPhone 6, I turned Haptic's up and volume down ( I'm higher tone deaf so no point for me as I wont hear it) I was well away.
I downloaded some apps such as my Bank and Email also Around Me so I could use it with Maps to use as a walking Sat Nav, also BBC news app.
All of these worked well for me the At a Glance I found really useful as well as the Call Feature as when I'm on a bus or the school run it isn't ideal with Guide dog in one hand, child in the the other so now in an emergency with just a quick click and a tap or even a 'hey Siri Call...' at my wrist I could call for help without being at risk. That was a huge biggie for me.
However for me there is one very big FAIL! It is not the fault of Apple or the Applewatch but my hearing aids, they do not work with Bluetooth, no connectivity so I can't hear directly to my ear so I found myself holding my wrist right up to my ear looking abit 'James Bond esk' but not a great feeling trying to juggle everything child, dog and school bags it was abit of a pain but as I say not Apple's fault but the Oticon spirit Zest hearing aids supplied by the NHS so no perks which a real shame as I feel I could probably gain a whole different view had I had the right equipment.
Any way a month down the line the applewatch feels great it's amazingly light and easy to forget it's on my wrist until I get the helpful Haptic's reminder of something in my calendar or emails, and even to navigate to somewhere new, very useful In busy town centres when I just need to go from A to B without scanning around which causes terrible eye strain and headaches, Applewatch has helped stop this, no more scanning just relying on a simple tap or taps on my wrist enabling me to simply direct my guide dog left or right accordingly.
Pretty awesome and effortless for me, my daughter likes the drawing bit in the contacts with those who also have the watch she thinks its magic and cool.
I know I have a lot more to learn about my Applewatch and I'm sure in the coming months I will have more to report.
I'm feeling more confident and independent and feel with this technology and my guidedog I can become ever more independent, maybe a part time job soon.
The only snag I have are these 'prehistoric' hearing aids. Having hearing aids with full comaptibility would be absolutely awesome, I guess a girl can dream!
That said I love my new watch, it is more than a watch and whoever developed Haptics - Thank you life is definitely a little easier.
I want to say Thank you to to the MWT Global Giving project for this awesome gift!