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..
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!