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Wednesday, 16 September 2015 11:45

Hear No, See No, Techno!

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.

Tuesday, 16 June 2015 12:18

Knowledge but Frustration

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.

If you have an experience you'd like to share please contact us

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.

  

 

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