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...
I have now realised after many years that always trying to fight Usher Syndrome certainly does not work.
I don't know if it's a pride thing or that I am just perhaps so damned stubborn that it gets in the way of actually letting me try to live a normal life.
I can always remember as a child being given a thick pair of NHS brown glasses I hated them with a passion and fought hard against wearing them!
Thank goodness lessons have been learnt since then and those hideous glasses are a thing of the past.
I also fought against hearing aids but now I know I am not alone.
I fought against the fact I had to give up driving.
I fought against using a cane then the realisation I needed a guide dog.
I thought I was the most stubborn person in the world until I realised I was only fighting with myself, with acceptance of Usher Syndrome, that both my hearing and sight were worsening, the very things that would help me cope I would not accept! I did not want to be “different!”.
I struggled with myself, my changing world, changing needs and I wasted years not accepting the inevitable.
I have Usher Syndrome type 3, the rarest of the Usher types, I am different but I am not alone.
I have searched my soul so long and hard and realised the guy in a wheelchair, woman with a birthmark, the boy with a prosthetic limb, old lady with a wig surely they must feel the same way as I do . So if you analyse these things who defines what perfection is in a human being? I'll tell you it's you and no one else .
So when you wake up to that fact as I did you won’t let Usher Syndrome tear you apart.
I had for years and years quite literally allowed it to rule my life in such a negative way but now I have my life back to a certain degree. You have to learn to live with Usher Syndrome then you are more in control.
I’m now glad to say I'm a lot happier and can for once share information openly the word BLIND no longer hurts I can take a joke about it and even make the jokes about it .
The most important thing is I adapted I now have more glasses than Specsavers to make sure I got what was right for me and I don't care as long as they work for me.
I have a huge array of multicoloured canes because that's what it took for me to come to terms with cane training.
I lost my driving licence so I bought a tandem.
I love my guide dog and can travel places I would never dream of going and have without a doubt met the most inspiring people in the world who actually turned their lives around and just get on with it and enjoy it.
My Bradley watch has even become something of a fashion iconic symbol.
I’ve learnt some Braille too.
I strive to keep busy I now love life so much more.
I’m excited by the latest technology that is out there.
I am on my third set of hearing aids and yes my ears are sadly like my eyes deteriorating but as anybody with Usher Syndrome, deafblindness knows good hearing aids are essential as the ability to use any visual clues diminishes.
I am grateful to the internet for finding more people with Usher Syndrome, it is rare but there are a fair few scattered all around and we are all looking for each other as sadly there is little specialist support for us so we all need each other.
This is how I came across Molly Watt, her supportive family and The Molly Watt Trust.
I was very fortunate to have a cracking weekend at The Molly Watt Trust Edinburgh Event and sat through a very informative presentation from a guy from ReSound a hearing aid manufacturer leading the way in hearing aid technology followed by a short presentation from Molly herself speaking of her work for MWT but also about how her life has been transformed by Linx2 ReSound hearing aids.
I am pretty switched on with my iPhone and after such a positive blog about Applewatch http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days I am looking to getting one as soon as possible as it will absolutely allow me access to new things including navigation and safety and now I also need access to these hearing aids, they will give me so m much more than the ones I have at present.
I've done research on these and they appear to be the best available hearing aids which we can now be in total control of in every situation . These aids can link via Bluetooth to a free app from ReSound so you can adjust your aids as appropriate be it where a busy, noisy pub or outside in the park . This is what we have been waiting for this is very high tech but very simple to use .
The amazing thing is they can even be paired to the Apple Watch via Bluetooth . So now my quest to make life better and enjoy it a little more also making me safer on my many travels I will try and try hard to get these at the top of my
Wish list .
Remember life is what we make it if we adapt it gets better we don't have to fight all the time .
Technology is definitely the way forward as I know it can and will make a huge difference to my life ..
I recently read about somebody I know who has Usher Syndrome and had got into a very scary situation.
Having Usher Syndrome this sort of thing is very easily done.
An accident as simple as getting on the wrong bus in the dark, being put off the bus with directions to safety but you didn't understand the directions and finding yourself all alone in the dark bearing in mind you are completely blind in the dark, terrifying.
Being deafblind is often very disorientating at the best of times and lots of us experience dizzy spells or vertigo, often seems part and parcel of the condition and being lost or feeling lost adds to the anxiety lots of us can feel when out and about particularly in unfamiliar areas.
Similar happened to me before I had guide dog Unis and I was petrified, fortunately for me I had my cane, must have looked lost and was helped to a bus stop and onto the correct bus home. To say it knocked my confidence was an understatement, I didn't attempt to go out alone for several months, isolating myself rather than face the possibility of getting lost again.
The day that happened to me I did not have a smartphone or the technology I am lucky enough to enjoy today I just did my best with what I had.
I am pretty confident today and I know that confidence and independence come from incredible technology and of course Guide dog Unis who has saved my life on more than one occasion as back then I struggled to see or hear traffic even with my old hearing aids.
I have blogged about my new hearing aids Linx2 but after four months of this incredible technology along with iPhone and Applewatch I can say my safety and feelings of vulnerability have improved substantially.
Now when I am out and about with Unis I have the ability to change my hearing aid settings to block out certain sounds so that I can not only hear traffic but I can identify the direction of the sound, something I have never ever been able to do so now I see so little I can have trust in my hearing even though I'm deaf and I hear nothing much without hearing aids - get this, "My deaf ears compensate for my dodgy eyes!"
I am now 21 years old and in four months I've learnt so much more about sound than I ever knew.
I hear sounds I've never heard, I've corrected my own speech, things I've said wrongly for years simply because I couldn't hear the sounds properly, I've "overheard" conversations, a really new concept for me, I can speak and hear well in small groups, I hear so much more its hard for me to explain its just quite an "Eyeopener and I'm blind!"
My confidence in my own hearing has improved my vocabulary, yes, even at 21 I'm learning new vocabulary, I'm not mishearing which was often my biggest frustration.
This last week I did something I never thought I'd be capable of doing without help - I took my first ever conference call yes, not Skype, not FaceTime I totally relied on technology to hear and this is how:
The ReSound Linx2 connect to both my iPhone and my apple watch via bluetooth. When the call comes in I can answer via my watch, clear speech goes directly into my ears, no background noise or interference.
I cannot describe my elation at being able to access a three way conversation, to hear clearly two unfamiliar voices and to make plans for an upcoming event.
I'm sure lots of people are thinking it's no big deal but it really is because using a telephone is something most take for granted and yet people with with Usher Syndrome who use hearing aids often cannot and as a result struggle, particularly in the workplace and yet it's possible if only this up to date technology was available to them.
To have these "Smart Aids" (the first to be fully compatible with the applewatch) the watch and an iPhone work out to be very expensive, however when considering what this kit enables a person to do it makes complete sense in my opinion.
I feel very humbled to have access to this technology, it absolutely makes me me.
I am not a tech expert, an expert of Usher Syndrome or anything else for that matter but knowing that this sort of technology exists and what it can do to enhance the lives of those with such challenges it has to be viable.
Speaking about Siri I have noticed it is by far better on my Applewatch than on my iPhone, I'm curious to know if it will improve on iPhone with the new operating system, either way I will continue to use Siri on my watch so I have the security of leaving my phone out of view and safe while I am out and about with Unis.
I'm still a huge fan of taptics but am now finding Siri so useful, when Siri talks to me the sound goes straight into my ears so I hear clearly thanks to these amazing Linx2 hearing aids and if Siri cannot help then there's almost certainly an app that will do so.
It's great to have so much independence via technology that I can access so easily.
I was asked if Siri understands "deaf voices" well, it understands mine is all I can say.
I'm also looking forward to understanding what "native apps" work on the new operating system for Apple watch and just out of curiosity to see if there is any safety element there.
Along with the excitement of so much new assistive technology available comes the frustration of knowing so many people who would benefit won't because they cannot afford it.
There is so much advancement in technology surely funding the right equipment as opposed to the cheapest equipment makes absolute sense.
The main aim of the Molly Watt Trust has always been to raise awareness of Usher Syndrome and we continue to do this in as many ways as we can.
Molly continues to raise awareness with her keynote presentations and motivational speaking as often as she is able and to as many people as she can reach, all different ages in all different walks of life.
Our guest bloggers also raise awareness by sharing their personal experiences which is a huge help.
The smallest bit of awareness can help somebody's daily challenges hugely.
Most of you will be aware of Molly's recent blog about her apple watch which was seen by over 200,000 people in a month, the awareness from this one blog created a very healthy interest in Usher Syndrome and it's many challenges, particularly from the world of technology which is very encouraging moving forward with accessibility.
The blog showed how all sorts of new technology can enhance the lives of people living with the condition.
A most generous offer from GN ReSound UK Ltd to allow her to try their new smart aids, compatible with Apple iPhone but even more exciting and exclusively, at this time, compatible with the new Apple Watch.
Of course experiencing this new technology has been fantastic for her but as important is her feedback and her thoughts relayed to both the company and to other hearing aid users and particularly those with Usher Syndrome.
The result of this is that Molly produced a further and much more detailed blog (My Eyes, my ears, my Apple Watch) which can be viewed at www.mollywatt.com which again pointed out the importance of up to date technology and how it has enhanced her life and continues to do so.
Whilst this is fantastic it also makes it crystal clear that people with Usher Syndrome and hearing aids could hugely benefit from the very best technology just like those who need and rightly get cochlear implants.
Research into new and useful technology is exciting so whilst we wait for science to catch up thankfully there are things that can make a difference to everyday life, the most frustrating part is funding it!
If you can help in any way please contact us.
In the meantime we will continue our work raising awareness and funds as best we can to purchase smaller pieces or equipment to enhance daily life.
Firstly I'd like to congratulate my beautiful, inspirational daughter on her recent blog http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days two weeks on over 193k hits and growing which means fantastic awareness of Usher Syndrome and particularly so in the world of technology.
Molly has been taken aback by the interest in her blog which had initially been written as new content for her newly designed website www.mollywatt.com where she is building her own profile and to inform those with Usher Syndrome, deaf or blind of the possible advantages of using the Apple Watch.
Together we looked over the many reviews and comments to the blog which have in the main been met with great interest and from all over the world which is amazing.
Of all the reviews one particular comment stuck out and it was one that questioned the number of people who actually benefit from the built in accessibility in some products, most notibly Apple.
Those with Usher Syndrome clearly benefit but in real terms those with deafness or hearing impairment, blindness or visual impairment or those with deafblindness and numerous other disabilities also benefit.
This is before we consider the ageing population who often become visually impaired or / and hearing impaired or deaf, blind or Deafblind, so a considerable number to consider for accessibility.
Helen Keller's profound quote is something for us all to think about when we think about accessibility:-
“Blindness separates us from things, but deafness separates us from people.”
So to the techie community out there, please continue to consider the needs of those with sensory impairment, you are making a huge difference to millions and a huge thank you to all who read, considered and enjoyed Molly's blog, there is certainly much more to come from her.