I wanted to write something for GAAD (Global Accessibility Awareness Day) this year to take into account a lot of the work I have been doing over the last 3 years and how and why I do it.
Being born deaf and living as a deaf person with NHS hearing aids until I was 12 years old allowed me to adopt lots of coping strategies that saw me through my primary school days. Back then I did not realise my hearing aids were assistive tech, I just wore them so I could hear, so I could be a part of everyday life. Apart from my hearing aids I used a radio aid at school, hated the fact it drew attention to me but looking back my hearing friends were not bothered by it. Considering I didn’t speak too well until I was 6/7 years old I did very well at my local primary school with visits from the teacher of the deaf, a speech therapist and a teaching assistant, deafness is not rare.
My big challenges came when I was diagnosed with Usher Syndrome, deafblindness, a progressive condition with no cure.
I could dwell on all the negative things that happened to me back then like being bullied by staff and pupils at a school for the deaf, being in denial, mental health issues as a result, counselling but actually I want to concentrate on the positives that came from those ugly and unnecessary things.
Nobody was in my shoes, however, strangely many liked to talk for me, tell me what I was thinking and what I needed to do to deal with myself, well, actually NO. I was brought up to speak up about my needs as few people knew much about my condition so there I was speaking up, which at 12 years old is a big deal, sadly few listened!
Determination to make something of myself I initially chose to be a primary school teacher, worked my socks off at College.
I wanted both a career and to make a difference but it wasn’t to be, unfortunately my dear old friend ignorance reared it’s ugly head again and I was denied access to my course by a very highly thought of London University!
So another avenue closed for me, however, the realisation that every step of the way I was excluded was because of my accessibility needs and an unbelievable lack of care or understanding.
What I had not realised was how my coping strategies and desire to be included in society had grown hugely from that deaf child relying on hearing aid technology and assistance from those very experienced with deaf children.
The lack of understanding of deafblind needs had led me to discover the world of assistive technology #techforgood #techforall
Using my faithful MacBook I was accessing the world, something I couldn’t do on a laptop as the accessibility features simply were not there without incredibly expensive software and for me even with it I wasn’t comfortable.
I loved Apple accessibility features right from the start and thankfully for me things got better and better, along came iPhone and then iPad and applewatch all of which I use, each of which have opened up my deafblind world.
To add the icing to my “Deafblind Accessibility Toolkit” today I wear state of the art smart hearing aids made my GN ReSound. I have been very fortunate to have worn LiNX2 which were upgraded to LiNX3D which changed my life beyond all recognition.
I was used to my old NHS Phonak Hearing aids and to be fair whilst I was just deaf they were ok, however, becoming deafblind, losing the ability to use my eyes to lipread, see body gesture, see sign language, hear sounds and although not knowing where they came from I could turn around and look around to find the sound, often sounds of danger - those coping strategies gone so unless somebody close by talking to me on a one to one and in an acoustically appropriate room I would struggle to hear. Life for people with progressive conditions like myself have to deal with ever changing challenges, many of my challenges similar to the ageing process! I blogged about this http://www.mollywatt.com/blog/entry/accessibility-grandad-and-me .
Enter GN ReSound technology. I could now hear well enough to use my iPhone as a phone because of direct streaming, never had I been able to do that confidently with the previous hearing aids. I could hear differently, the voices of those closest to me sounded different, I could hear different tones, a new clarity. Something very new to me and something that blew my mind was directional sound, now not only could I hear better but could localise, I could hear people speaking behind me, I could “earwig” on other peoples conversations and as if that whole new access to sound wasn’t enough those smart hearing aids could be paired to my iPhone, iPad and applewatch enabling me to access directly streamed sounds directly to my ears along with apps many of which are so enabling to somebody like myself. On that note GN ReSound had an app for my smart hearing aids which initially enabled me to adjust my hearing aids further, I could change base and treble, a number of different setting again that I could change depending on the environment I was in and as if that wasn’t simply amazing the next generation LiNX3D enable all of those things and more, now I can remotely report any problem I might have with my hearing aids, my audiologist check my hearing aids and deal with my issue without me having to attend or send them away. Not sure it gets much more awesome than that for somebody deafblind because of course we also have mobility challenges!
Something else that has happened as a result of my wearing these smart hearing aids is the quality of my own voice has improved which is awesome.
I have written extensively about applewatch and it’s importance in my life http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days and today it is something I never want to leave home without.
Today I am using all of this technology, I know I am very fortunate to have this equipment as it has changed my life and resulted in me operating in the fields of accessibility, usability and inclusion.
I want to share my experiences not just of what is available to enable, but how these things can be life changing and life enhancing not to mention bring inclusion to many who do or have felt isolated.
Today I am listened to, I am a regular keynote speaker around the world and in varying fields, I have spoken to some of the biggest in digital and continue to have my say in all things accessible.
I provide accessibility workshops where I use the skills I’ve developed to access the world and these skills can and are used by those involved in developing and designing accessible websites which brings more inclusion but also by those struggling, people like myself, our ageing population in fact accessibility makes life easier for all.
It has become very clear that often those in high places, the decision makers are often unaware of exactly what is available by way of assistive technology and as result millions are missing out, excluded through lack of awareness and this has to change. Knowledge and a return on investment makes complete sense.
I am pretty sure if I did not have access to the assistive technology I use daily I would not be the person I am today, I would not experience my as close to normality as it gets being deafblind. I would not be the confident person I am today, I’d probably be that quiet introverted person struggling to deal with life, mental health problems and zero confidence.
Everyday I thank my lucky stars that my parents taught me to speak up, everyday I know how fortunate I am that I was given access to technology that has changed my life and everyday I’d like to bring positive change, make a difference for others to benefit and to raise awareness of just how enabling digital is for us all.
Lastly for those who take the time to listen and make changes thank you for making life more inclusive.
We were delighted to be chosen to be Maidenhead’s Thames Riviera Hotel charity of the year. Early in January we began planning a September event to mark the 3rd Official Usher Syndrome Awareness Day (USAD).
It was soon realised that the Hotel would be hosting an Amy Winehouse Tribute the day before and decided MWT would run USAD around this event.
Friday evening was all about #InitTogether the importance of bringing an often isolated community together for a fun, sociable evening around a three course meal and music. It was a great evening.
Saturday morning was all about our accessibility and usability workshop run by our own Molly Watt and work colleague and friend of Molly Watt Trust, Sigma’s Chris Bush. The chance to learn and be interactive with each other whilst learning how to maximise the many uses of handheld devices, smartphones and tablets which can provide real enablement.
The feedback for the whole weekend has been very positive:
‘I have never met anybody else with Usher Syndrome, a room full of Ushers, fantastic.’
‘Thanks for your very informative workshop, one little tweak and my life is made much easier.’
‘I learnt more about accessibility features on my iPhone at your workshop than I did after an hour at an apple store!’
‘Your event was the first I've ever attended, I was so nervous but found everybody so friendly and helpful and I now have friends with Usher Syndrome.’
‘I appreciated the patience of Molly and Chris being so patient, I was comfortable to ask over and over until I understood a few useful tips about accessibility on my iPhone.’
‘I thought I knew all about accessibility on my iPhone, I was wrong, the MWT workshop taught me so much.’
‘I found your workshop more useful than anything else I’ve experienced. I came away feeling enabled not so disabled.’
Just a few of the many quotes received since the workshop along with requests to run the workshop around the country.
We would like to thank the Thames Riviera Hotel for hosting our event and continuing to support our cause. To their staff who took on board some very important points for the comfort of our guests. Providing a well lit room, waitress service to our guests and little things like contrasting tablecloths and crockery and blue glasses a huge assistance to those with visual impairment. Staff were also very helpful with the many guide dogs on site even helping escort several guests across the busy road and directing to the bigger park close by.
This was the first event we have held in the south east, even so we had guests and support from all over the country all wanting to be a part of our #InitTogether #Ushlookslikethis weekend.
All in all the whole weekend was a huge success and one we would like to repeat. We look forward to Usher Syndrome Awareness Day 2018.
Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person.
My answer would be ‘touch,’ however so many seem uncomfortable with this!
I have noticed here in the UK most people are not as “touchy feely” as those in Europe.
Here a greeting tends to be a fairly stiff and formal handshake which is a nightmare for me as I cannot see a handshake coming, whereas in Europe and further afield a greeting is more of an embrace, a kiss or cheek to cheek which is better from my point of view as I am able to establish eye contact fairly easily.
I think the general feeling here is not wanting to evade somebody’s personal space, however for those of us with sensory impairment being touched/tapped appropriately as a way of getting somebody’s attention is no big deal and usually acceptable.
I was born deaf and now deafblind I can say getting the attention of a deaf person is different to getting the attention of a deafblind person.
Touch has taken on a whole new meaning.
Before I lost my sight I got used to being tapped on the shoulder to get my attention, tapping is acceptable.
I could use my sight to compensate for my deafness, a tap would bring an immediate response in that I would turn and look to where the tap came from. On getting eye contact a conversation could begin, orally or sign language as I could lipread, follow facial gesture and body language.
Reliance on visual clues on a one to one basis is always much easier than a two, three or more way conversation, something to bear in mind.
I am oral, however this would be the same irrespective of method of communication. Whether communicating with speech or sign language most deaf people lipread.
Being deaf means concentrating really hard on all visual clues to aid with listening and communication and is very tiring.
Environment can make a big difference, quiet or noisy, light or dark can effect communication and patience is always appreciated.
If approaching somebody you know to be deaf and who's involved in a visual orientated conversation, the key would be to tap that person on the shoulder and wait until they turn to face you - DO NOT stand too close, or exaggerate your lip movements when you open conversation.
Be happy and willing to repeat yourself if asked to do so, repeat, not shout!
Equally if somebody uses sign language allow that person to tell you how they would like to communicate, just because you might not sign do not think you cannot communicate, there’s always a way be it by gesture and a little guess work or even by writing things down.
NEVER, NEVER, NEVER think deaf, cannot hear so no point trying to converse at all. We all want to be included, isolation is a very lonely place. Think VISUAL,VISUAL, VISUAL.
This is how things worked for me whilst I was deaf.
I enjoyed socialising and rarely felt left out.
In mainstream my friends knew to give me a tap on the shoulder to get my attention and I coped very well.
The time I spent with deaf children I noticed they used touch regularly to get each others attention, they would also flick the light switches on and off which I hated as changing light effects my sight so much and is painful, not to be recommended, tapping far more friendly for all.
For a deafblind person, the approach is different.
A tap is a gentle touch and not as useful for a deafblind or blind person.
I benefit more from a hand gently placed on my arm or shoulder, this enables me to turn towards the hand touching me and scan from where the hand is upwards toward the face of the person wanting to converse with me.
Once I’m looking towards the face then speak clearly. This is really helpful.
As someone who has both deafness and blindness the sense of touch has become so important as has the sense of smell in my daily coping strategies.
Both senses enable familiarisation, familiarisation of places, of people and of things.
Touch is another way the deafblind communicate, hand on hand or tactile signing, braille.
I’ve often wondered is the thought of simply touching somebody offputting, if it is please reconsider, I would far rather somebody touched me to get my attention than ignored me.
I always want to feel included, I want people to want to talk to me, to feel comfortable in my company.
I am Molly, I just happen to have Usher Syndrome.
“Blindness separates people from things;
deafness separates people from people.” Helen Keller