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Advocating for those living with accessibility needs. Sharing experiences, raising awareness and understanding of how assistive accessible technology enhances and enables those in need.


Tools to Navigate Usher Syndrome

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.

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