We really need to get beyond the assumption that all deaf people hear nothing and all blind people see nothing.

There are those with no sight at all and there are people with no hearing at all, however there are lots of variations in between.

People born blind are different to those who go blind and the same with deafness, all need to be considered for accessibility.

I'm no expert, have just learnt these things since going from deaf to deafblind as a result of Usher Syndrome.

Being born deaf means I was brought up a visual learner and even though registered blind, not partially sighted, I choose to use my 5 degrees of useful vision to access information.

I accept that at some stage I might need to transition to voiceover, I am fortunate, I could access voiceover with my linx2 hearing aids, with my previous Phonak hearing aids I would not have been able to even consider using voiceover.

When you consider lots with Usher Syndrome in the UK will be using standard NHS hearing aids, many without direct bluetooth connectivity making voiceover a no no - this is one of many reasons why deafblind hearing aid users should have access to the best available assistive technology as using their eyes is not always an option, as may well become the case for me going forward, however at this time I choose to read text.

I continue to find accessing information online and using apps difficult as there remains insufficient accessibility features available to me.

The regular fob off is there is voiceover for the blind, not all blind use it and I am deafblind or there are captions for the deaf which are often too quick for me to keep up with.

It took forever for Facebook to get dynamic text as a feature, we are still waiting for a choice of colours and contrasts.  Will it ever come, who knows?

Just over a week ago I attempted to contact Waterstones Book Shop with a view to them stocking my children's books and I was faced with this https://www.waterstones.com/help/independent-publishers/48 impossible for me to read, colours made it completely inaccessible.  I'm told this matter will be looked into.  In the meantime I've had to have additional help, not quite how I want it to be at 21 years old!

Then last week LinkedIn. LinkedIn offer voiceover and nothing else, there is no dynamic text, no way of changing colours or contrasts or changing text sizes on their app.

It is possible to use the iPhone zoom feature - is it right to assume every LinkedIn user will have an iPhone?

I may well have Usher Syndrome which is a progressive condition without a cure, however, as people grow older they too begin to need larger text more choice in colours and contrasts, they do not just switch to voiceover.

The accessibility features I speak of would help huge numbers of people so why are these things not taken into account by developers right at the beginning?

Frustrating is an understatement for the way I feel. Sadly so much remains inaccessible and wonder when it will all change?

All I can do is hope access for all comes sooner rather than later!

 

A year ago I first blogged about my applewatch, link below, the reaction was unbelievable.

I fully intended to return my applewatch within 14 days, however, it transported me on a journey into a new world of accessibility, confidence and independence.

In three words I’d describe it as 'Accessible, Enabling and Empowering'.

I guess the best way to explain why it has been a game changer for me is to give an idea of what I deal with on a daily basis having 

Usher Syndrome (deafblindness). 

Besides being severely deaf, blind and deafblind and the obvious not being able to hear or see well there are the added extras people often don’t consider.  Communication, mobility and little awareness.

As a result of my condition I have suffered with anxiety and depression, mainly because of lack of understanding.

I rely on technology, for me it isn't simply about having the latest gadgets its about enablement and inclusion.

As difficult as life has become since going blind and becoming deafblind I am fortunate to have been given access to the most amazing technology, thanks in the main to a very supportive family.

As a teenager, my ability to see went and along with it went my ability to access text and written information which was very traumatic.  I was at school and although I was assigned support assistants most didn't really understand my needs and as a result I was let down.  Sadly relying on other people rarely worked well for me, unlike technology.

Technology allows me to be independent.  My first MacBook was my first step towards independence.  

Once I had worked out the built in accessibility features I had access to a lot of what everybody else had and most importantly at that time I could access text and my school work on my own, I could have larger text, I could zoom in and invert colours, something so useful to me as my window of vision shrunk and my aversion to glare grew.

Then came iPhone, iOS and apps.  Back then I couldn't use the phone as a phone very much as I really struggled to hear however it was a fantastic tool with fantastic built in accessibility, brilliant again and very simple.  FaceTime was a revelation for the deaf, allowing signed conversation.

However as grateful as I was for the support and technology I had access to, I still remember feeling quite different to my peers, I felt isolated and unhappy.   I remember watching my younger sister become a much more independent teenager.  I regularly made comparisons to her which exasperated the way I felt about myself.  Despite the 5 year age gap it was clear she was far more independent than I was even though I'm the 'older sister' I found it very upsetting and it made me feel both depressed and cut off from normality.  I craved independence.

Then last year came, for me, one of the most enabling pieces of technology.

Applewatch offered me more than I could have imagined and was simple to use, literally mirroring my iPhone. 

Built in accessibility including, for the first time prominent haptics which have enabled me to get out and about, to go outside of my comfort zone, giving me a new sense of confidence and independence.  It allowed me to push my boundaries. 

Prominent haptics enabled me to get from a to b relying on sense of touch alone, with cane or guide dog, day or night.

Feeling taps on my wrist meant a new and reassuring way of navigating, receiving text messages, calls and various other reminders.  

It also pleased my family as they could contact me and not just hope I would hear the call or text, so real peace of mind for them.

The anxieties of going out, possibly getting lost, missing texts or calls have gone which is a great feeling and great for the confidence.

I was not a total recluse before applewatch as I had my guide dog, Unis, however for those not aware guide dogs learn regular routes which is fantastic however when it comes to going outside of your comfort zone it is not easy.  For me it wasn't helped by a series of discriminatory scenarios, all too common for those of us using guide dogs.  Being denied access to the places most people enjoy without issue does nothing for the confidence.

Being able to follow instructions by sense of touch is something my condition cannot take away and a very natural way of accessing information for me. Prominent haptics have been very empowering.

Unis and I began travelling further afield, my confidence grew and as time has gone on the anxieties I used to feel about being out and about have subsided.  

I have travelled all around the UK, to Boston, Miami and San Fransisco, maps is incredibly accurate and I completely rely on it because of haptics.

Whilst travelling I have used several apps on my applewatch, Citymapper, Foursquare, Moovit, Trainline and Tube Map also Hailo and Uber.  Uber isn't an app I use anymore since hearing about a few cases where guide dogs have been denied.

applewatch allows me to feel very safe, I can glance at it for lots of things whilst my iPhone stays safely tucked away.  

applewatch wallet means I don't need to fumble around at cashpoint machines or in my purse for money I cannot see.  

I remember how vulnerable I felt holding my iPhone and my purse, I don't have the need to do either so much anymore thanks to Applepay which is brilliant.  I used to really struggle, particularly in the US where all bank notes look the same to me, the embarrassment of holding up a queue, thanks to Applepay on applewatch these situations are now avoided.  I hope over time the £30 limit is increased and that more places take Applepay as this would make life easier, even though it wouldn't be safe for my bank account!

Accessing my bank account details on my watch is also very useful and stress free. 

I have also started using Siri much more and on the whole I'm very pleased with it.  I feel this feature has definitely improved a great deal.

I still have 5 degrees of vision in my right eye so the applewatch screen suits me well, meaning I don't have to scan such a large area like with iPhone, as a result I'm not getting as much eye strain or headaches.

Siri has become a great friend, so much easier to ask Siri than to strain my eyes looking for things online. 

My applewatch has allows me to not use my iPhone as much as I did. I happily rely on haptics, meaning my eyes are rested and I feel more relaxed.

Since having Unis I had to learn to trust her to make decisions, this can be hard for someone who is registered blind but still has a little remaining vision.  My applewatch has become like a security blanket because with haptics together with my four legged friend I feel I am in good hands or I should say paws.

Back to Siri, speaking into applewatch or iPhone to ask basic instructions or so I thought.  

It is, however, not as basic as I initially thought!  By saying the words, 'Hey Siri,' followed by (for instance) 'I would like to order Dominos,' it brings up the number for me to call and order my dinner. All without even using my fingers; without needing to scan to find numbers on a cluttered website. 

So that's on iPhone. Brilliant right?

On the applewatch it's one step better for independence. 

Saying the words, 'hey Siri,' into my watch, followed by 'I would like to order Dominos,' it takes me to maps, and directs me to my nearest dominos via prominent haptics. How's that for independence? 

Again, all this whilst resting my eyes.  I do have to confirm my location and pick which dominos (though it lists the nearest dominos in order, so I always tap the top on the list without reading too much - that's trust!).

The comparison would be me attempting to navigate a cluttered website, my worse nightmare, with many images, the Siri route is far easier for me.

Over the course of the year lots more apps have become available on applewatch which again makes life easier.

I began monitoring my exercise, with the activity app and was surprised at how many miles I walk in a week with Unis. I can also say that over the year of monitoring my heart rate both before and after exercise I have become so much more calm.  

I do still feel anxious from time to time, however nowhere near as much as I used to.  

On the whole I feel much more comfortable with my new found confidence and independence. 

Usher Syndrome is an incredibly tiring condition.  Concentrating so hard on listening and using whatever sight I have along with my  memory is exhausting and can make me clumsy and forgetful.  Thanks to applewatch I have become so much more organised.  

Accessibility on the watch meant I was using calendars much more, however I recently found Fantastical, I do think it is too expensive for an app however it is very accessible and easy to use. There are many similar apps, typically the better ones cost!  

I like lists, lists are so much easier for me to access and lists keep me organised. 

The tiredness, often exhaustion can make me feel unmotivated, however lists give me a meaning to get on and once I'm started those lists give me focus.  

Routine has always been very important to me, if I feel in control of a situation I feel calm so this new way of organising myself has given me the feel good factor. 

Spark is another app I like, it makes accessing email nice and easy on the go.

I look forward to more apps becoming available on applewatch and to finding my uses for them.

The year has flown by and as a result of that first blog I was able to make contact with GN ReSound, the manufacturers of the first hearing aid, the Linx2 to offer complete connectivity not just to iPhone but to the applewatch.  Connectivity to applewatch has made a huge difference to my communication skills when I'm out and about.

Linx2 hearing aids enable me to access telephone calls for the first time in my life and via my watch.  I can answer a call on my watch and the sound is streamed direct to my hearing aids.  I have experienced a completely new hearing and listening experience.

Being able to use a phone is something that has been hugely enabling and it has given me huge confidence so much so I have been interviewed live on radio over the phone and I have taken part in several conference calls something I would never have been able to do with my old hearing aids.

I have experienced new sounds, music, lyrics and spatial awareness.  I always liked music, I couldn't hear the words but felt the rhythm.  I now love music, I love the story telling, the atmosphere, mood it can create, I certainly now know what I was missing.

I can also ask Siri to play my music on a wireless speaker I bought recently, it's all just amazing.

Very importantly I can now hear the sounds of danger and know where those sounds are coming from when I'm out with Unis. 

Not being able to see or hear can be very frightening.

That first blog brought me lots of opportunities to meet some amazing people, to discuss accessibility for people with sensory impairment, deafness, blindness and Usher Syndrome and to raise awareness of needs something that gives me personal satisfaction.

365 days on my overall health is better, I'm fitter and in the main much happier.  I do still suffer with bouts of anxiety and depression.

Being deafblind will always be challenging however I have faith in technology becoming more inclusive and more enabling.

My hope is that more people needing it have access to it.

I bought my applewatch because I was curious and with the intention of returning it within 14 days.

Instead I have been so impressed by what it has done for me that I set up a fundraising campaign to help fund applewatch for others living with Usher Syndrome, positive feedback available on my charity website and of course if you could help enhance and enable the life of another with Usher Syndrome www.globalgiving.org/projects/deafblind-need-access-to-life-enhancing-technology/ Thank you.

I absolutely would not be without my applewatch today and look forward to more apps coming along to assist with daily life.

 

Job Title:    Spearheading The Molly Watt Trust,  

                 Ambassador for Deafblind Charity Sense

                 Advocate for those living with Usher Syndrome, Sensory

                 Impairments and Hidden disabilities. 

                 Published author and illustrator of 2 children’s books.

                 Keynote and Motivational Speaker and keen Blogger.

                 www.mollywatt.com

                 www.molly-watt-trust.org

                 twitter @mollywatttrust             

I am 21 years old and registered deafblind as a result of Usher Syndrome.  Usher Syndrome is varying deafness and blindness.  The blindness is retinitis pigmentosa.  There is no cure.

Usher Syndrome is not just ‘deafblind' it is much more.  It brings challenges of communication, accessibility and mobility.

There is little awareness of my condition, being a hidden disability makes it all the harder to deal with and as a result little understanding by the world at large making it very difficult for all dealing with its many challenges.

Since my diagnosis at age 14 I have been raising awareness of Usher Syndrome, making basic videos, blogging and speaking publicly.

I won the award Young Deafblind Person of the Year in 2010 at age 16 for my awareness videos which are now used to educate those working with Usher Syndrome.

I have spoken in some amazing places including Harvard Medical School, Houses of Parliament, Hospitals, Schools, Charity Events to businesses and very recently at the Apple Campus in Cupertino.

My whole world is very much about accessibility. 

I recently began consulting on website and app accessibility as well as blogging about accessible products, my http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days went viral and along with it came lots of interest in what I am trying to achieve.

Without assistive technology and my trusty guide dog Unis I would be a very different person.

I want to speak about the challenge and barriers I have faced and how technology helps. About the need for understanding all accessibility needs.

For accessibility to be an important part of every design, in technology, in public places, in everything. 

I am very much looking forward to meeting and presenting to this influential audience.