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Monday, 13 December 2021 20:20

A time to reflect

15 years since we found out I, little deaf Molly, was going blind.

I am 27 years old and have been registered DeafBlind for 15 years. I keep thinking about the hard fact that I’ve been blind over half of my life. Sighted days and memories are further away from me as the days and years past, as a person it’s daunting as a deaf person it’s pretty devastating. 

I’ve had questions like “do you remember what it’s like being sighted,” “when you dream, are you sighted?” And truthfully I don’t know how to answer these questions because truthfully I don’t know. All I know is that is I remember life being easier. 

I’m not saying being deaf was easy, but day to day I was able to get by without needing to ask for help on a daily basis. I talk a lot about being independent and I thrive to be, but when all is said and done the hardest part of acceptance was accepting I need help, and I’ve noticed as I’ve gotten older I’m less bothered asking for help when I need it. 

That said, this past year I have moved out - my guidedog Bella and I, finally live in our own little home. I’ve wanted this for a very long time, not because I am 27 because it’s of course it's not unusual for anyone any age to still live at home - but I’ve known for the past 2 years especially since lockdown that, I’ve been ready to pursue a life of full independence.  One thing I definitely have learned even just recently, that I’ll never stop needing help. That’s okay. With a progressive condition like Usher syndrome it is, inevitable,  as today reminds me, it was always going to be this way. That doesn’t stop me from doing what I can do, it just means a little help along the way will help me be where I want to me. 

2021 has been a testing year for everybody I’m sure, but for me a few good things happened, the main one I got myself a boyfriend, one who I can whole heartedly be myself with, never not shy away from being Molly - previous relationships I treated Usher syndrome like it was a part time job, I shied away from asking for help at the risk of feeling a burden. But as Usher syndrome goes, it being progressive and unpredictable with the mood swings and seasonal changes, I just cannot afford to treat it part time any more. I express constantly before anything I am Molly, being DeafBlind is not who I am but a part of who I am. 

Even when I was ‘just,’ deaf I never imagined being deaf would in any way stop me from doing life the way I wanted, and that’s one thing I miss most - the certainty knowing that although I was deaf, I coped amazingly with my hearing aids, lip reading and I didn’t resent being the only kid having hearing aids and asking people to repeat themselves constantly.

Now, as a DeafBlind person, there’s no resorting to lip reading, there’s actual things I’ve wanted to do that I’ve not, or will never be able to do for example: driving. I’ve always envied anyone who could get in that drivers seat and drive. “You’ll never be designated driver,” cor how I’ve clung to that phrase, and “it’s so expensive,” but isn’t life? As I am learning more and more since I’ve left home. 

Quite honestly I think I’ll always be a little gutted I’ll never be able to jump in the drivers seat and drive wherever I would like, just because! Times I’ve sat waiting in the car while friends went to put petrol in, or get cash out and I’ve sat staring at the steering wheel wishing, imagining - that’s something I have of course accepted, but it doesn’t make it easier. I am independent, I am able to jump on a train or a plane and travel - but we all know how awful public transportation is - imagining that being your lifeline? Cancellations, delays, inaccessible locations that requires extra Uber’s - and dare I say, the high risk of them refusing you because you have a guidedog - it’s pessimistic to say so but unfortunately it happens more often than not. 

Molly Watt Trust was set up many moons ago to help enhance the daily lives of those with Usher syndrome, and it’s fair to say we’ve done that and continue to. 

Molly Watt Talks was set up almost 5 years ago where I continue to use my voice to fight for a more inclusive planet, one that designs to be more accessible, for all services provided to be more accessible, for attitudes to be more inclusive, environments to be more accessible, workplaces to be more diverse and inclusive. 

Molly was brought onto this planet to be this person, to help others and create positive impact for others living with challenges. I am proud to do the work I do and along with the crew at Nexer Digital doing great things, we’re succeeding.

Times like today, particularly since I’m isolating (I’m fine,) I have been reflecting. 

The very realisation that I’ve been blind over half of my existence has been a bit of a reality hit for me and one that I’ve been thinking about a lot. Which is a crazy thought since I talk a lot about my story at work, and in my day to day purely to raise awareness - I know my story and many who have seen my talks know it back to front, but I’m still a little taken aback at the realisation.

So do I remember things as a sighted person? 

I really don’t know. One thing I know, is I have a hell of a lot of memories that have justified my lack of vision. My experiences will forever be talked about, I will always be an open book since that’s just my personality.  Over the years it’s been hard to talk my Deafblindness, but like it or not, it’s brought me here. I didn't feel overly 'different' as a deaf child but Deafblindness has brought so many experiences I never thought possible and I have accepted never will I experience things as a hearing and sighted person, again. Those words are scary to write, but are my reality. 

I don’t resent my life, I don’t feel my existence is pointless - there were times where these were very things I thought daily. Mental health has and will always play a big part of my growth. But here I am, living in my small pad with my guidedog listening to music to uplift my spirits (big shout out to GN Hearing) and to go along with the mood I’m in, I’ve changed my flat around for the 26364738th time. I love it. This is me, Molly, 27 and Deafblind. Happy and independent.

I’ve always called it a phobia, the way I think about the future - I would avoid thinking too far forward as it would terrify me because I know my 5 degrees window of vision can only get smaller. But for the first time, ever, I am not afraid to think a little further into my future and all I see now, is me continuing as I am, this time with a boyfriend as well as selected family members (who’s family is perfect?) and few good friends - and I can say that with full confidence. 

27 years severely deaf, 15 years blind, 13 years with depression and severe anxiety > 27 years of Molly’s adventures that have not yet finished. Let’s see where the next few years take me.

Friday, 03 July 2015 20:33

Tools to Navigate Usher Syndrome

I wrote about my very early experience with my Apple Watch and I'm continuing to use it, experimenting with the apps that I am able to access and those I think can be helpful / useful to me as a deafblind, guide dog owner.

My Apple Watch certainly isn't an expensive gimmick to me.

Taptics is definitely the most amazing accessibility tool for those with dual sensory impairment.

At the moment it is very rare to find anything with good accessibility for the deafblind.  Up until now it has been very much for the blind or the deaf and single sensory impairment consideration often does not work for those with Usher Syndrome.

Unis my gorgeous guide dog has made my life easier, making me more independent, she gets me from a to b safely, however, Unis can only go where I ask her to.

Unis knows familiar routes, which is how she is trained.  For instance if I walk to the end of the road and turn left Unis knows we are likely to be heading to the train station. To get to the train station we have to go via one of her favourite free run areas and if I have time I will let her have a run before getting to the train station, that's very easy for her.

If we turn right at the end of the road she knows we are heading to the town and possibly the bus station and that is also easy, like being on cruise control, however if we are going further afield Unis relies on me to give her instructions, that's when life becomes more challenging, we are both out of our comfort zone! 

I am safe with Unis but we might have got lost!

Most apps for the blind rely on auditory instructions so often not accessible to the deafblind. 

The deaf can see so would look at their phones for direction, plus the deaf can drive so mobility not the same issue as with the deafblind and blind.

I cannot express enough how important taptics are I just wish more of my fellow Ushers could experience what I'm enjoying. Sadly financing what they need is often the biggest access issue!

I spoke about my use of maps when I first got my Apple Watch and how I can now get around safely with Unis in areas I'm not familiar with which has widened my world.

Another navigation app was brought to my attention ViaOpta Nav which works on the iPhone and Apple Watch so I was keen to see how it worked in comparison to maps.

I always have to check settings first: 

Good that that there are different colours and contrasts, text to speech initial setting (normal) far too fast and no voice choice - immediate change to very slow which is much more appropriate for English speech in my opinion.

Accents are often difficult for me and many with deafness so a variation of voices could make life easier, at least one male and one female voice would be useful.

It is disappointing to not have a varied text size, unless I have missed it.

The light theme is good for me but unfortunately when setting the theme the actual "light" theme doesn't show until leaving settings - to set themes is the worse colour combination for me personally - white background with black writing, the glare from white background is unbearable, this is the case for lots of people with various types of blindness.

I found using the app very easy and useful for Unis and I, particularly that the app can advise of useful places around me and direct me there using taptics and it was fairly accurate too. 

It would be useful to have information about navigation on foot and public transport when going further afield.  I put in my Grandfather's address which is 198 miles away and the only navigation instructions I got were by car - I can only use public transport!

I would like more English terminology too, for instance transportation is very American.

I'm going to mention the variation in needs here as deafblind is very different from the blind.

When I was first diagnosed we were told to consider Usher Syndrome not as Deafblind but deaf, blind and deafblind, to give an idea of the complexity of the condition and I think that's very relevant when it comes to accessibility.

A blind person could use this app very nicely wearing headphones for the auditory commands via the phone, albeit they would miss out on environmental sounds unless using one earphone or could hold the phone for the sounds.

I'm not a fan of holding the phone for safety reasons. 

In my opinion the Apple Watch would be better but the blind would have a choice, however deafblind people would be relying solely on taptics so no choice, would need the Apple Watch (cost just increased).

There are varying deafness and blindness within the Usher Community so I can only comment from my own viewpoint.

I started wearing my Linx 2 hearing aids at the end of May.  Having worn hearing aids since I was 18 months old I coped fairly well until my sight deteriorated and then I realised how much my hearing had also relied upon my sight - I felt more deaf, the visual clues I'd relied on have virtually gone so I was sceptical but curious particularly because they worked with via Bluetooth with both iPhone and Apple Watch the two things I rely on most.

Not only have these hearing aids improved my hearing experience but have given me access to so much more that I couldn't access before. 

Previously my hearing when aided was ok but in perfect environments, quiet and on a one to one if not I could hear but highly likely to mishear.

With Linx2 not only am I hearing new sounds, I'm hearing much clearer sounds, in noisier environments and I'm so much more confident.

I would not have been able to access auditory commands and struggled to hear on the telephone, however I now have the option of hearing some instructions directly into my ears which has been a huge leap forward for me as I mentioned previously and I can now use some of the many apps designed for the blind, however it isn't ideal.

Being deaf and wearing hearing aids and listening is hard work and very tiring which is why we desperately need more apps designed more specifically to make life easier for people like me in mind.

I want to be involved in the world of the hearing and sighted, to help those with my condition as I believe we have so much to offer.

Few consider the accessibility needs of the deafblind, I guess that is why lots of us have become quite expert at adapting what we can and try to enjoy what is available.

What no hearing aids do is cure my deafness, without them I cannot access speech, so always remember aided I'm ok without I'm a different person!

I am, however, so grateful to be young enough to understand and access the amazing assistive technology available and I'd so like to help others in the Usher Community access it and help them learn how to use it and allow them the same opportunities as myself.

Monday, 29 June 2015 12:26

Coffee and Cake isn't Easy!

Up and ready to go out, mum notices my top on inside out, another of the joys of blindness, quick sort out and a check, hearing aids in, Apple Watch on wrist, iPhone charged and safely in bag along with spare hearing aid batteries, purse, reading glasses and case for dark glasses, tissues and doggy treats! Thankfully my bag isn't as full as it used to be thanks to a few things incorporated on my iPhone like magnifiers and torch, things I could never leave home without. Unis in Harness and we are almost ready to go, a quick check of the timetable on my watch and we leave. As we are going on a regular route to the train station Unis knows the way just by the direction we are heading, however since getting my Apple Watch I like to test it to make sure it is reliable so set it to maps and away we go. On reaching the station we approach the ticket office to buy our ticket, am hoping this is made easier when Apple Pay comes to the UK as I do feel vulnerable opening my bag and fumbling to find my purse, especially if there is a queue. I pay, carefully put my purse away and put my ticket safely in my zip pocket. We proceed to the platform. One thing I have learnt about travelling on the train and particularly the tube is public transport staff seem to be pretty well trained with assistance for blind people or deafblind in my case. I was told a while ago to use the first carriage as it is more likely to be less crowded. I also know to make myself known to a staff member, finding one with limited sight is often the hardest part. I would find it helpful if a staff member made themselves known to me! Anyway, Unis and I are used to the train so get on and having checked how many stops there are get comfortable for the journey, on this occasion we get a seat without any problem and I'm able to have Unis sit tucked in close beside me. There are seven stops before we need to get off so I sit back and enjoy the journey. It is very rare for anybody to ask if I need help or where I need to get off, I think it would be nice to be asked but I guess some wouldn't. Gets me thinking taptics could help here! At the seventh stop we wait for the carriage to empty a little and then we mobilise, now comes the main challenge, finding a staff member to help me navigate the underground. Unis is out of her comfort zone but always makes sure I am safe. Thankfully a member of staff taps me on the shoulder and offers help. We follow him down some steps and through a couple of tunnels and onto a very dark platform and all the way to the end where we wait for the tube. Wondering if there's an app that uses taptics through the underground, how cool would that be? When the tube arrives the staff member sees Unis and I on to a crowded carriage and moves somebody so that I can sit down and Unis be comfortable, he tells me I have six stops to go, he then radios ahead and gets off the tube. Again I sit back and count the stops and at the sixth stop I take a deep breath as I know I'm going to have to fight my way off with Unis, however, as the door opens I'm surprised to feel a hand on my shoulder and a man clearing the way for Unis and I to leave the tube safely. The staff member asks me where I'm heading and offers to "point me in the right direction" Thank you Transport for London, very impressive. Checking my Applewatch I know we only have a short walk to where we are meeting my friend for lunch so we set off. The taptics are brilliant on maps and Unis and I get through the crowds safely and into the coffee shop where my friend is waiting and greets us. We order drinks which I pay for with my Applewatch and sit back to enjoy my coffee and friendship before considering my journey back home! A few years ago I would not have attempted this journey, I could connect with my friends online so I would probably have made an excuse rather than admit my vulnerability and lack of confidence, that's denial. I was only kidding myself, but denial is a safe place to be, to hide, but hiding for me was only an option for so long! My day out to meet a friend is quite different to most people my age. Not only do I have to rely on Unis, technology and human kindness to be independent I also need to strategise and to be very organised. I do enjoy a day out but it is very tiring as I'm permanently concentrating on what happens next, having Usher Syndrome is exhausting but that's just the way it is. Life is a daily challenge but what's the alternative?

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I should make people aware of the type of blindness associated with Usher Syndrome is called Retinitus Pigmentosa (RP). The characteristics of RP usually start with night blindness, followed by a progressive loss of peripheral vision, so tunnel vision and what we see varies in different light conditions too and not just light to dark but from room to room, outside to inside in brightness and glare, environmental changes that just happen, yes, it is a nightmare! Of course I'm no expert on these things so the following is me talking about myself and just an outline for those reading my blog. Again everybody with the condition is different, I was very unlucky to have been registered blind or I should say registered Deafblind at just 14 years old and being already deaf it was the most distressing time of my life - that's possibly a blog for another time. Anyway, the loss of sight has to be one of the worst nightmares for somebody already deaf. Not only did I lose my sight within two years along with it went all the visual clues I relied on to hear, lipreading, facial gesture, body language - it felt like I was more deaf. The irony that I was often told "Molly you've got eyes in the back of your head" so observant was I! The level of concentration required to carry out everyday things is exhausting having Usher Syndrome and I can have days and days of migraine and sore eyes, but it's just become part of life. Back to what I wanted to blog about: Molly with Usher Syndrome / Deafblind I had to learn to use a cane, I hated it and by 16 years old I became a Guidedog owner. To get the independence I desperately wanted I had to learn to trust others, rely on others including my Guidedog Unis and technology, it did not come easy! That was then, now at 20 years old I have accepted that I need help but I like it to be as discreet as it can be and I feel lucky that there is good technology out there, often accessing it is the difficult part! I guess lots of you will remember my blog "My Apple Watch after 5 Days". For me it was a lot about, awareness, accessibility and independence. I therefore decided to leave the watch at home after 10 days and to carry out what would be a quiet day for me on a regular route that I would have no problems with Guidedog Unis. I found myself constantly looking at my wrist and strangely felt vulnerable as I immediately went back to holding my iPhone in my hand for fear of missing messages which I had gotten used to feeling on my wrist. The more I looked at my wrist the more anxious I became! Very strange. By the end of the day I had a terrible migraine and very sore eyes. It was then that I realised I had not had a full on migraine since I had been wearing my watch. Having thought about it a lot and of course going back to using my Apple Watch I believe the "no major migraine" had been since using the watch! Maybe it's coincidence, only time will tell. Funny I had thought the small screen of the Apple Watch, even though I chose the bigger of the two available, would have been a major issue for me, however because what I see is the equivalent of looking through a straw the screen is actually better for me than even that of my iPhone. I do not have to scan so much for information, glancing is actually easier on my eyes particularly as I have adjusted down the brightness, made the text bigger and use zoom. Surprisingly 10 days was all it took for me to become pretty reliant and attached to my Apple Watch. I'm very excited to have the opportunity to try ReSound Linx2 hearing aids from next week as they are said to be the first "Smart Hearing Aids" fully compatible for iPhone, iPad and Apple Watch. For those interested, I will blog about how I find the new hearing aids but it probably won't be for a few weeks as new hearing aids take some getting used to. Watch this space.

Monday, 01 February 2016 14:22

Mr Cane in the Rain

Over the years I have become more and more anxious in and around London. I live about 40 minutes away from the city in a small town. Not a lot goes on in the town I live in. 

Growing up I loved visits to London it really is fantastic, a City I love.

However, as my sight progressively got worse, I became more stressed in crowded areas, that horrible feeling of claustrophobia.

Moorfield Eye Hospital became the only reason I would go to London, a day at Moorfield Eye Hospital is not a pleasant day out. 

At one point I was living independently on the outskirts of London, from a convenience point of view and as a guide-dog owner, this was fab. Hopping on and off the bus to get anywhere, the buses were so regular and reliable, I loved it. 

Being on the outskirts of London was perfect, it was not as busy as central London,  yet it was ‘happening’ enough for me and Unis to get about with ease and no stress. Independence was grand.

On a Moorfield eye appointment day I would take Unis, usually my Mum drives us into London, so I am able to avoid the crowding on public transport. Being driven in saves me the anxiety I feel on crowded public transport. 

Being out with guide dog Unis in the busiest parts of London I feel incredibly stressed, worrying more for her safety than myself particularly as I've had a few bad experiences of her being trodden on, I'm sure by accident but as I can't see I can't save her from harm and it's incredibly upsetting.

People in London are always so busy rushing around, rarely considering others.  It's something I am not used to and it troubles me.

I know lots of people who live in London and have guide dogs and for them it's all very normal but I am a small town girl and that is what Unis is used to, just the way it is.

I have lots of friends in London and I'm often invited to meet with them but I'd talk myself out of going because of the anxieties I feel about using Unis and in effect missing out on lots of social events.

I am very fortunate to have friends who understand my challenges and do go the extra mile to help/ support me whenever they can

Yesterday I was invited into London for the day. 

Knowing my anxieties my friend offered to meet me at Paddington Station which would have meant me just getting on the train local to me and getting off at the last stop.

However, I was feeling brave and wanted to try to get further into London independently, with my cane, Mr Cane that is.

I would have to tackle the underground, I was going to need lots of confidence but it also meant independence. 

I got up and took Unis for a long free run, and made sure she was happy with a few goodies, the company of my parents and her big box of toys, it was her day off.

I dusted off one of my red and white canes and off I went.

I still can’t believe I did it.

I was cane trained at 12/13 and I absolutely despised everything about it. 

At the time I did cane training I was in absolute denial, completely refusing to believe I needed any help let alone a cane. 

Even when I went on the waiting list for a guide dog it was extremely rare that I would use my cane - except for the Moorfield trips with my Mum. I never minded this because in the busy hustle of London smoke, who was going to know me? 

I did not want to be seen with it locally period.

Having had Unis now for 4 and a bit years, I have fully accepted my condition and accepted needing Unis on a daily basis for my independence. 

I have accepted Ushers syndrome, Deafness, blindness and Unis. 

However, could I truly be brave enough to brave London with the dusty Mr Cane I have done my absolute best to avoid it up until now?

I really did surprise myself.

It was raining, Unis was wet from her free run.  It was just as well she wasn’t having a day in London on such a wet windy day she would have been smelly (sorry Unis) and another reason to avoid going in. ‘Nope’ I thought to myself, no excuses today.

My Dad gave me a lift to the local train station where I spoke to someone at the desk and got my ticket using my applewatch and I was on my way. 

The ‘Tube tamer’ app is brilliant, sadly not accessible on my applewatch which is a shame so I had to use my iPhone to check my route. 

I screen shot 3 different routes just in case, and saved them as my wall paper, so I could quickly remind myself of the route/ tube line/ direction I was heading.  

Screen shooting is something I do regularly to make life easier for myself.

I did get lost. Of course I did! 

But for what it was worth, I really enjoyed testing myself. 

I interacted with a fair few Londoners that day, don't let anybody tell you Londoners aren't friendly, they are and they offered me help and reassurance that I was heading in the right direction. 

Tube maps are impossible for me to access, and my Applewatch was inactive underground. 

TFL (Transport for London) staff were all hugely helpful. 

I did not feel like the cane was my label that day, I actually felt that the cane was my reassurance and my safety. 

I did not care at all that I had this red and white cane in front of me, I could sense people staring but did I care? 

For the first time since 14 using Mr Cane, I did not care. I was more focused on getting where I needed to be, safely.

I got there in good time and had a lovely day. 

Whilst with my friend I folded and packed Mr Cane away in my bag and enjoyed being guided by my friend. I was guided around successfully, no bruises or bumps!

It was a good day.

It took years but finally at 21years old I managed a whole route into London from the small town I come from, just me and Mr Cane.

Let me tell you, despite the great day I had and the beaming pride I felt, returning home in the dark after a long wet day in London I was mighty pleased to see Unis again. 

Unis will always, as long as I have her, be my number one mobility aid, but now I have a ready and able alternate in Mr Cane.

Wednesday, 06 January 2016 14:16

My Applewatch Experience 8 Months On

I thought it fitting that my first blog of 2016 should be an update on "My Applewatch Experience" after 8 months and to mention the project set up to fund it for others.

I’ve read lots of posts about applewatch, some very technical, some good and some bad.

For me it has been more personal, more about accessibility and inclusivity and how it has changed my life, enhanced it in ways I didn't believe to be possible.

Who would have thought a watch could bring independence, aid mobilty, reduce isolation and along with it confidence.

In my first blog http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days I talked about maps and safe navigation using taptics, my world has opened hugely and I have used this feature a great deal not just around the UK but also in Boston and Miami. It is very accurate and very impressive. 

I’ve now found applewatch apps for public transport which have taken a lot of stress out of getting around independently.  I can now access information via the watch like train platform numbers and departure times, this is something I could not do before, unable to access moving information boards or hear muffled tannoy in noisy crowded stations, I can also flag a taxi without any hassle using my watch.

Stress free navigation has been huge for me.

Applewatch is simply part of my everyday life, its features have eased my daily challenges.  I have invested in a couple of new straps which allow a little variation on the look.  I personally love the look, shape and size of my Applewatch, I think it’s chunky look is quite trendy.

Usage wise and from a health and wellbeing point of view I am no longer using my iPhone as much as I did which has reduced eye strain and migraine, I’m able to rely more on what my watch offers.

I enjoy the Activity feature, I walk a lot with guide dog Unis and find a satisfaction in knowing I have achieved certain goals.

My life in general is also less stressed than it was.  

Usher Syndrome is deafblind however deafblind is only part of this disability, mobility is a major issue and cause of much stress when you cannot see or hear properly and this has been well addressed on applewatch as detailed above.

I have found voice to text very useful and fairly accurate, I would however like any text or message sent to state ‘sent via applewatch' just so the recipient is aware should the text be slightly out rather than possibly assume my English questionable!

Alerts via taptics is brilliant and over the months I have realised that text messages, whatsapp, tap, sketch and phone calls all have customised vibrations which means I only look at the watch if I feel I want to, again resting my eyes more than I’d previously been able to.

I still use taps as a quick and easy way of getting attention if I need to, very clever and easy on the eye too.

I use the Starbucks app regularly and also love Applepay as it means not only do I not need to carry cash but I don't feel the vulnerability and stress I used to at opening my purse and struggling with money and change.  Being able to access my bank details on my watch is also so useful as cashpoints for the deafblind are very challenging, pretty inaccessible and something I would dread.

I personally don't use my Applewatch for accessing email preferring a bigger screen for anything long, however I have recently found the App Spark which I think would work for me if the text was bigger.

Applewatch is hugely convenient for anybody, even more so for somebody deafblind like myself for whom it becomes a reliable friend.

In my first Applewatch blog I wasn't using Voiceover just because of personal preference however, I have started using it on my other iOS devices and have found some speech preferences.

For those not aware Voiceover is a built in accessibility feature in Apple products which is a navigation service that reads aloud EVERYTHING you scan with your fingertip.

I feel there is room for improvement on Applewatch, it doesn't work in the same way as on other devices because of its much smaller screen.

on iPad and iPhone one finger is used to scan and listening to what is being said is fairly easy for somebody blind, for me, thanks to my Linx2 hearing aids I too can hear if I’m in a quiet environment, however, scrolling down a whole screen using Voiceover you have to use three fingers, this does not work on Applewatch.

The small screen of the Applewatch works well for somebody with very limited vision like myself and able to access text, however if reliant on voiceover I’m personally not too keen.

On the home screen the icons are very small, I struggle to see them, if you scan with your finger Voiceover will read them to you which is very useful however, moving the screen to see hidden icons whilst on Voiceover, is a real challenge, in fact, I still haven't sussed this out!

I personally would recommend setting up glances if available on your iPhone as it is much more easily accessed this way and then mirrored on the watch by swiping rather than straining your eyes to see tiny icons.

I set up as much as I could on my iPhone and it has definitely made using applewatch very easy.

There are lots of apps on my iPhone that would be very useful to be on Glances, I’m hopeful more and more will become available.

 Looking back to before applewatch I used my iPhone all the time, I worried it would be snatched from me as I couldn't see or hear things around me particularly outside, I worried about battery life, would rarely venture out of my comfort zone, I really felt very vulnerable.

I had to hold the phone or have it very close to me to feel a vibration indicating a text or call and even then often missed them.

 I am now easily contactable, I am well connected because of state of the art accessible assistive technology.  

It has made me feel independent and confident and such a long way from the isolation I once felt and sadly so many others with Usher Syndrome still feel.

Technology does change lives and it will only improve, it needs to be available to all. 

I feel so passionate about this technology that my charity The Molly Watt Trust has set up it’s first GlobalGiving project to fund applewatch for others living with Usher Syndrome https://www.globalgiving.org/projects/deafblind-need-access-to-life-enhancing-technology/

Friday, 24 October 2014 01:00

Hi "I am Claire"

Hi I'm Claire Cooper and I have Usher Syndrome type 2, I've been partially deaf since birth with 2 digital hearing aids but never considered myself deaf as I've always been oral and never needed BSL. I had help where needed throughout school and college. 
 
When I left college I began a career in the hospitality industry working in bars and clubs I was living a normal teenage life. But then when I hit 20 I began to notice the spotlights at work were becoming an issue among many other things like bumping into lampposts and falling off curbs etc, and soon became known as "Clumsy Claire".
 
At 21 I got married and only a month later we got the answer as to why I had been so clumsy.... Usher Syndrome
 
Well that took the wind out of my sails and really knocked our honeymoon period into a downward spiral, I couldn't see the light So became depressed and questioned my marriage as I didn't want my husband to become a carer, it felt like I had been given this life sentence and wondered what I'd done so wrong to deserve this. I learnt the prognoses and thought my life was over. 
 
My husband was amazing he said he would stick by me no matter what, that he would always be there.
My parents and family took it hard with self blame as its a genetic condition but they too said they would support me through everything I did. 
 
I also found Molly and Jane Watt before MWT was born.  They were the first people I discovered with a link to Usher, when I discovered my diagnoses I'd never heard of it and felt alone so to find these amazing people really showed me the light, even though Molly is younger than me she was so positive and was achieving so much, her mum is such a fighter too helping so many with Usher Syndrome overcome obstacles if something isn't right then Jane is there without question. 
These people are amazing and have helped me through so much they don't even realise, without them I don't think I'd be where I am today.
 
Which is a Mother to a Beautiful 3 year old girl, we decided to move our life plans forward so I could see my child grow up while I still have sight. I'm also a Guide Dog owner, my dog Minnie has been another little life changer and has firmly put our lives back on track. 
I also enrolled myself into Open University to start studying again which without Jane and Molly's help I don't think I would have ever considered again. 
 
Usher Syndrome may have been the worse news I've ever had to hear and also the biggest life changer but it's made me who I am today thanks to the amazing people around me I've become a fighter and a person who has Usher and proud!