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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.


Awareness, Accessibility and Technology = Independence

Awareness, Accessibility and Technology = Independence

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.

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