A A A Accessibility A A A A

I was prompted to write a blog on reading this quote: 

“For people without disabilities,technology makes life easier.  For people with disabilities technology makes things possible” (IBM training manual 1991).

That quote was made 3 years before I was born and how true it is.

My life would be so different without technology, even in my lifetime it has gotten better and better and allows me to be the person I am.

Without hearing aids I would struggle so much more with communication, that is not to say I wouldn't be oral but life would have been far more difficult as I know it was for many older than myself. 

I had analogue hearing aids to start with, friends my age who were profoundly deaf and did not find hearing aids useful were not implanted until 3 or 4 years old meaning they were a long way behind their hearing peers speech wise, some caught up and some didn’t.

Today children are bi laterally implanted often under a year old and that early access to speech is allowing them amazing communication skills, being implanted 2/3 years earlier makes a huge difference.  

The earlier the access to sound the better.

Profoundly deaf children are now so much more inclusive than ever before.  I really enjoy speaking in schools where they have deaf children and seeing how well they are doing with their up to date technology - the Cochlear Implant.

However, it makes me very sad that children and adults who need hearing aids often do not get the best available and have to get by.

I did okay with analogue and early digital hearing aids but I was one of the lucky ones, I had fantastic support from my family and local services, unfortunately this sort of support remains a post code lottery.

Now that I have the very latest in hearing aid technology, GN Resound's Linx2 I can see what so many are missing.

Anybody who wears hearing aids will tell you a new pair of hearing aids takes some getting used to, usually a couple of weeks or so and I was fully expecting this with my Linx2, however, these hearing aids took nearer 6 weeks to fully appreciate and it was really hard work.  The reason for this was there was so much more for my brain to process, yes a whole lot of new sounds I had never experienced, it seemed my brain heard the new sounds before the old ones and I was in a state of confusion with it all for at least 2/3 weeks and it was a very tiring time, however, I slowly got used to the new sounds. The new sounds and different way of hearing has resulted in lots of compliments on the new quality in my voice.  

Strange, I thought my voice was ok before but to be told it has improved has made me very happy.

The clarity of sound is amazing, I can decipher lyrics in songs rather than humming along and making up my own words.

I hear familiar voices differently and I can now rely on my ears to compensate for my blindness which really is a massive deal.

I have blogged about coping strategies and how the deaf can hear with their eyes, lipreading, facial gesture, body language, how some use sign language, a completely visual way of communicating and how I felt more deaf as my eyes began to fail when in actual fact my hearing was stable it just showed how reliant I was on visual clues - I was more deaf!

Usher Syndrome (deafblindness) has brought a whole lot of new challenges and some of them can be eased with the ability to rely on the awesome technology in the Linx2 which goes a way to compensating for failing vision with their ability to provide such clarity in hearing, to make listening less exhausting and the most amazing feature that blew me away “Spatial Awareness” now not only can I hear things I have never heard before, I now know where sound is coming from and can adjust settings myself based on my environment. 

When you then add the amazing connectivity to smartphone and Applewatch I can now hear and speak confidently on the telephone, giving me the ability to communicate in a way I never thought possible.

Usher Syndrome type 2, the type I have is the most common of all Usher types and can be diagnosed at any age.  Most have a hearing loss between mild, moderate or severe so tend to be hearing aid users and yet they do not receive the same consideration as those profoundly deaf, in fact there are areas in the UK where they have or are looking to save money by not providing NHS hearing aids to those with a mild loss or only funding one which is a complete nonsense.

Hearing aids, even the very best like mine are a fraction of the cost of cochlear implants.  

Being able to hear is important to ALL deaf people irrespective of level of loss.

We need the best technology for all, it means allowing people like myself to be valuable and inclusive members of society and not isolated.

Blindness and technology is different for me, firstly I was not born blind, I had perfect vision until I was 11 years old, at least I did for sure in daytime, darkness has always been my enemy, I thought just because nobody liked the dark!  Perhaps I was night blind back then!

Anyway it doesn't matter, I was brought up a very visual learner and for that reason a lot of what is expected of a “blind person” doesn't work for me as a deafblind person.

Firstly I was told I must learn braille and learn to touch type!

Braille didn't work for me as I could read text, even though the text has to be in a certain format for me to access it and I can only read a little at a time, why did I need Braille, perhaps a string to my bow at some stage but not a priority for me.  

Touch typing was an interesting one because I could virtually do it already, I guess because I’d had use of a computer from an early age it wasn't really something I had to learn.

Having a macbook has enabled me to access the world since my Usher Syndrome diagnosis no extra software just awesome accessibility built in.

However, I have realised there is a lot of work to be done on accessibility and I guess understanding will come as those involved with accessibility become more aware of the different conditions and exactly who they are catering for.

Deaf people with hearing aids or cochlear implants can hear, how much they hear comes down to the individual, lots rely on captioning or subtitles to access information.

In my case I’d rather be asked what i can hear, then my needs can be accommodated properly.  

Equally most blind people can see something, I have read somewhere that only 5% of blind people see nothing at all, again for me I’d like to be asked what I can see.

The assumption that all deaf people hear nothing and communicate with sign language and that all blind people use Braille or Voiceover is stereotyping and not acceptable.

Clearly nobody considers people with Usher Syndrome might not be able to use Braille and not hear to use voiceover or like myself not made the transition to aural learner in which case it would make absolutely no difference how much verbal describing any app does, Facebook are you listening?  

You are not meeting the needs of the majority of blind or deafblind people who choose to read text they can modify themselves.

It is pleasing to hear Android users can finally access dynamic text, just cannot understand why the hold up for those of us using IOS, especially as it has been made available on Facebook messenger.

I have asked when the required changes are being made but no response to date, I’m hoping sooner rather than later.

I know lots of people with Usher Syndrome and our needs do differ however we all have one thing in common, we want to benefit from technology, it really does make so many things possible, it can enhance our lives, allow us inclusion and safety, give us the ability to communicate with others and to be active members of society.

Please, please, please consider all our needs..

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.

Monday, 03 August 2015 17:38

Communicate Don't Assume

Up until 12 I believed I could do most things, why not, I was deaf but with hearing aids could hear. 

It did make communication an issue sometimes, group settings, noisy environments and bad acoustics did make life more difficult, using a phone could also be testing with my early hearing aids too and unfamiliar voices and accents could be testing but I could usually after a little practice get used to them.

Of course there would have been a few things I couldn't do but in the main I felt capable of most things.

To my surprise my disability was more of an issue to the outside world than to me.

This very strange assumption that firstly I would use sign language to communicate was the first barrier I came up against followed by the assumption I would use Braille!

I remember being very shocked at the thought as I had not met a first language signer until I was 14 years old and all I knew about Braille was learning about Louis Braille in Year 2 at Primary School!

I learnt to speak just like my older sibling accept I was slower and I needed specialist speech therapy and I learnt to read books in Primary School as I could see perfectly back then.

BSL is a beautifully visual language and I did learn it just to communicate with other deaf people who use it, I'm not the best at it but I do my best as communication and inclusion is so important to us all.

I really struggle with sign language now my sight is so poor but if it is somebody's only way of communicating I can interpret if the environment is right, this means good lighting, not bright lighting and for the person signing to be at a distance that suits my small window of vision. 

The level of concentration for me to interpret is huge as I have to be very alert to scan, process and convert what I'm seeing into speech, that said I'm happy to do it if I can to help.

Being able to communicate with speech is a huge asset to me, particularly since I became deafblind.

Life is challenging but I am able to communicate with the larger society, it is larger society who need to realise not all deafblind or deaf people communicate with sign language and not all deafblind or blind people use Braille.

Also not all blind and deafblind people use voiceover!

I realise going from deaf to deafblind reduces my options, causes confusion and is very misunderstood.  However, I like to be the person who decides what I can and cannot do.

Assumption and patronising is very annoying and often damaging, those of us with disabilities that are able to communicate tend to be the experts on us, respect us enough to listen.

Communication is a two way thing and if those who should listen don't then we have a problem!

I was matched with Unis when I was 16 and over the past 4 years have been subjected to terrible discrimination simply because people either do not follow the law or have no respect for it or people like myself.

Denying guide dog owners access to the majority of places is illegal yet it goes on all the time, sadly there is little support for people like me who often feel very alone and unprotected by a society that often appears not to care.

Only the other day a taxi was ordered and on mentioning I had Unis with me all of a sudden the company had no availability!  This is nothing rare, I've ordered a taxi before now and not mentioned Unis and been refused entry, no reason just NO!

Almost a year ago I was staying with my grandfather in Wallasey. 

On the evening of 27 July 2014 we decided to go for an early evening Indian meal.

I have been to Wallasey lots of times, having family live there and it is coincidently the place where the whole Guidedog movement began in October 1931, something the people of The Wirral are very proud of and rightly so.

However, seems not everybody in the area is as accepting or understanding of the laws with regard to accessibility for Guidedog owners and their Guidedogs!

We arrived at the Tandoori Mahal on King Street, Wallasey, apparently the oldest Indian restaurant in the area, just after 6pm (opening time) my grandfather told me the restaurant was empty.

On entering the restaurant we were told Unis was not permitted on the premises.  My grandad and I told the two men at the restaurant it is illegal to deny Unis and I to which they replied that they knew it to be illegal but that their boss didn't like dogs as they "scared away the customers!" strange as the restaurant was empty. 

It was very clear Unis and I were not welcome.

My grandad pursued things as I left the premises in tears, not only did I feel humiliated I was made to feel like I and my needs were unimportant.

As my grandad turned to leave having had his say to the two men another man appeared at the door, he was, apparently, the owner and told my grandfather that No dogs, Guidedogs included would be allowed in his restaurant!

All three men knew the law and all three men willing to illegally deny access.

I was distraught but so was my grandfather who was almost in disbelief at the complete and utter disrespect of myself, Unis and the law, that upset me even more.        

We went to another restaurant that evening and the following day contacted my mother who decided enough is enough and contacted Guidedogs for the Blind in Liverpool, they offered to call on the restaurant to "educate" and also contacted RNIB legal team to discuss the possible way forward - I was and still am very angry to be advised not to contact the media as it is my belief that bad publicity costs money and this would work in the favour of Guidedog owners and make others think twice about denying access.

To cut a long story short I was left by Guidedogs for the Blind to deal with RNIB's legal team who advised of the options.

I decided, with the financial help of my parents that I would pursue the matter and even after the restaurant was served with the relevant documents they had no answers for their unlawful behaviour and I therefore obtained Judgement against them, they ignored the Court documents and on 21 April 2015 a Warrant was issued to be followed up by the local bailiff.

The debt remains outstanding even though the restaurant remains open and the owners still in the local area!

This is nothing out of the ordinary, it happens all the time.  I do not feel protected by the law - I personally think trial by media works better than the law which really is alarming.

I'd still like the Wallasey media to get onto this because at this exact moment in time I have been wronged, it's been proved in law and yet I am still the loser - how can that ever be right?

Things really do need to change!

Tuesday, 23 June 2015 13:25

Internet Good and Bad

When I look back I can see I isolated myself when I was first diagnosed with Usher Syndrome.

I could carry on as a deaf person, no difference. I went to school, I was anxious as I struggled to cope with my changing world. I couldn't wait to get home to the safety of home and my Laptop.  I'd always have an excuse not to go out!

Communicating online was easy, back then we all had Bebo and MySpace, before Facebook and Twitter, I felt no different!

I was in my bedroom chatting to my friends, I didn't have to think about falling over, walking into things or people and although my eyes were terrible and often sore and tired I had a little more sight than I do today, it was ok!

What I sort of did but didn't realise was I was isolating myself, the Internet allowed me to do so because I could and because it made me feel "normal" but I was in denial, a very cosy place to hide until hiding is no longer an option. 

I have blogged about "coming out" as Molly with Usher Syndrome and as painful as I thought that would be it wasn't and it made me feel much better, after all I was only kidding myself deep down! I've found if people understand me and my challenges they are supportive without being patronising.

One of the real positives of accessing the Internet for me has been social networking, bringing people with Usher Syndrome together, as an American friend once said "You don't find somebody else with Usher Syndrome on the next block".

Usher Syndrome / deafblindness is an isolating condition, by definition and yes it's rare but we don't want to feel alone or different and now we have access to each other, we can support each other, inspire each other, share experiences and we can raise awareness of our condition and hopefully make a difference.

At a recent event I was asked what my favourite piece of technology had been and of course my hearing aids have to be right up there as they along with the best support, hard work and determination I'm able to communicates with speech. 

Communication is something most take for granted but it really is something I value particularly now I'm blind, deafblind - I can explain where I'm at, what I need and I try to use this ability to help others with Usher Syndrome.

After my hearing aids came my first trusty MacBook and the reason, besides what I've mentioned above was as my world closed in my MacBook allowed me to continue accessing the world because of its unique built in accessibility features and at 12 years old I learnt how to use the functions with little help and I feel very lucky to have grown up with this technology.

I hope technology becomes more accessible to all and that developers consider the individual access needs of all.

At that very same event I was asked who inspired me most and besides my close family my reply was Helen Keller because not only was she deafblind but she did amazing things without the technology I totally rely on, an incredible lady.  I wonder what she would have thought about today's assistive technology.

Happy Birthday Helen Keller 27 June

Sunday, 17 May 2015 16:13

Dear Tech, Please keep listening

 

Firstly I'd like to congratulate my beautiful, inspirational daughter on her recent blog http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days two weeks on over 193k hits and growing which means fantastic awareness of Usher Syndrome and particularly so in the world of technology.

Molly has been taken aback by the interest in her blog which had initially been written as new content for her newly designed website www.mollywatt.com where she is building her own profile and to inform those with Usher Syndrome, deaf or blind of the possible advantages of using the Apple Watch.

Together we looked over the many reviews and comments to the blog which have in the main been met with great interest and from all over the world which is amazing.

Of all the reviews one particular comment stuck out and it was one that questioned the number of people who actually benefit from the built in accessibility in some products, most notibly Apple.

Those with Usher Syndrome clearly benefit but in real terms those with deafness or hearing impairment, blindness or visual impairment or those with deafblindness and numerous other disabilities also benefit. 

This is before we consider the ageing population who often become visually impaired or / and hearing impaired or deaf, blind or Deafblind, so a considerable number to consider for accessibility.

Helen Keller's profound quote is something for us all to think about when we think about accessibility:-

“Blindness separates us from things, but deafness separates us from people.”

So to the techie community out there, please continue to consider the needs of those with sensory impairment, you are making a huge difference to millions and a huge thank you to all who read, considered and enjoyed Molly's blog, there is certainly much more to come from her.

 
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