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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, 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/

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