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 met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since she was 4 years old and was managing very well.
At that particular event we were very fortunate to have a presentation from GN ReSound’s Graham Roberts who was able to share with us the many impressive hearing aids and products available from the supplier.
That presentation together with Molly’s in depth and ongoing testimony of her GN ReSound LiNX² and how they have enhanced and enabled her life led to an influx of enquiries about how and why these enabling smart aids are not available to those living with Usher Syndrome (deafblindness), particularly as they offer far more than most hearing aids provided by the NHS.
It is fair to say everybody at that event, particularly those using hearing aids where very interested in the enablement smart hearing aids can provide.
Molly coped with standard Phonak hearing aids provided by the NHS until she was 20 years old, however, from 14 years old when she became registered blind, deafblind she struggled and the reason for this in the main was because of her blindness.
For 6 years Molly insisted her hearing had deteriorated even though test after test showed her hearing, thankfully remained stable.
In actual fact what had happened was her ability to lipread, to use facial expression and body language had gone along with her sight, her ability to access sound and communicate had dwindled, demonstrating just how much the deaf rely on their eyes to hear. In other words she could no longer ‘fill in the gaps’ that her eyes had enabled.
It is a fact that the deaf hear with their eyes.
GN ReSound LiNX² provide a hearing experience those who have experienced really benefit from. They provide an incredible clarity of hearing, they enable directional sound meaning that whilst Molly is blind she can now turn towards a sound, something she could not do with her NHS provided Phonak hearing aids, she can also identify not just where sounds are coming from but most importantly she knows the sounds of danger - just imagine how important that is to safety for the deafblind.
These hearing aids have incredible bluetooth connectivity to iPhone and applewatch, also android devices giving the ability to many deafblind to access aurally things they could only dream of previously. Using a telephone as a telephone for the first time ever is most certainly a huge positive.
Not only can they be adjusted be independently adjusted but enable a very personal hearing experience and in so doing bring great confidence and independence.
Our friend from North Ireland was one of many desperate to have access to GN ReSound LiNX² and indeed has asked her NHS audiology department, their response was somewhat bizarre - an appointment with the Cochlear Implant Clinic!
Cochlear implant is amazing technology for the deaf, however, not only is it not for everybody it is also incredibly intrusive, expensive and most importantly not what the patient wants why not consider more enabling hearing aids which happen to be a fraction of the cost.
Figures suggest the cost of 1 cochlear implant would be close to the cost of 10 pairs of best quality smart hearing aids!
There are lots of people who have been hearing aid wearers a long time and like Molly have gotten on very well with them but now need more as Usher Syndrome/ blindness looms close.
GN ReSound have a variety of hearing aids including the ENZO2 for those with a profound hearing loss and whilst they are the creme de la creme of smart hearing aid technology their cost in comparison to cochlear implant is very reasonable.
Cochlear implant involves surgery, it is considered that deafblind people should have two implants to enable directional sound for safety and rightly so, directional hearing is a must for the deafblind, safety is imperative for all, whatever hearing aids worn.
Most get one implant at a time so often two surgeries after each substantial aftercare and rehab at huge cost.
I’m not saying this shouldn't be the case, of course it should where appropriate, however not every deafblind person wants such invasive surgery preferring an alternate option.
Patients should always have a say in their care as it tends to be them who are the real professionals and who will have done the research based on their condition.
I know there is a long and in depth assessment for cochlear implant and so there should be but surely every patient’s individual requirements should be considered?
My friend in Northern Ireland was told there is a 3 year waiting list is this acceptable? Why not consider best hearing aid options?
We continuously hear that our NHS remains financially fragile, that it needs more funding but very rarely do we hear about solutions, about genuine savings that do not include reducing staff - surely this scenario has to be seriously considered
I would like to say our friend in Northern Ireland’s scenario is unique but sadly it is not!
I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services.
It certainly got me thinking and discussing in depth my journey of care with my Mum, the more we discussed the more obvious it became that there are really important communication issues amongst the many professionals connected to my care and wellbeing.
It had not dawned on me that since being diagnosed deaf at 18 months old and then deafblind at 12 years old just how many people, professionals, departments, agencies have been involved with me and on so many levels and how clear it is that there is a very serious lack of communication between them all!
Of course everybody has a GP, I then had an audiologist, a speech therapist, a teacher of the deaf, a teaching assistant and a social worker - I believe some of these did communicate with each other.
Then on diagnosis of Usher Syndrome I then had all of the above plus a teacher of the blind /VI, a teacher of the deafblind (eventually) an ophthalmologist, eventually a social worker but not trained to work with the deafblind and an occupational therapist - it is pretty clear these professionals were not working together.
Also involved was Department od Work and Pensions (DWP) and at one point Job Seekers Allowance (JSA) these two clearly did not communicate with the professionals involved in my care.
Strangely all of them would have details of me and my condition, each needs to be fully aware of my wellbeing, my needs and support required and yet everything is so disjointed.
Each writing to each other for information, often having to check or confirm information before there can be any positive action.
Why are my details not simply amalgamated digitally? I am not an expert on Data Protection but I'd be more than happy to give permission for my medical data to be shared amongst the various professionals deemed to be responsible for my care rather than me having to all too often explain my situation to all.
I am fortunate, my communication skills are good and I have a good understanding of my condition, however, some struggle to communicate and get across important information or need to rely on interpreters to communicate their needs.
I understand we cannot expect every professional to know about every specific condition, particularly the ones like my own, not as rare as some suggest but a condition that does vary from person to person.
Digital could make life so much easier in these situations and so much less time consuming.
To give an idea of the difficulties I have encountered as a result of having more than 12 professionals involved in my care please read on:
The longest relationship I have had was with my NHS audiologist, she was advised I had gone from deaf to deafblind, that I had Usher Syndrome, it made zero difference to how she treated me, for instance she would use gestures I couldn't see when communicating with me, take me into bright rooms that blinded me further. These actions and behaviours would have been perfect whilst I was just deaf but communicating with me as a deafblind person should have different and my condition as a whole been fully considered. She would write to me with the results of my hearing test in font 10 on white paper with tiny graphs all completely inaccessible.
The receptionists would insist hearing aid batteries be ordered by telephone or in person, I couldn't hear on the phone back then and mobility is never easy when deafblind - none of these requirements considered my situation, but they were the rules! I had to rely on others!
Then for me there was regular appointments with ophthalmologists and again, expert in their field but they would speak to me whilst looking at their computer screen and point to screens of graphs I couldn't hear them or see what they were pointing at, just bright screens that blinded me! Correspondence from them did come in a larger font but again on bright white paper I cannot look at, so again inaccessible!
I don't blame these professionals, I don't expect them to know everything about me but I can tell you these scenarios cause stress and anxiety.
Continuously having to communicate my situation, my condition is exhausting and my communication skills are good, many with my condition struggle with communication, I'm sure for them even more stressful and consider how long these explanations take at each appointment!
Two other unnecessary scenarios that could have been avoided:
The first, I finally got a social worker trained to work with deafblind when I was 18 years old, she spent a huge amount of time getting to know me, understanding my requirements and carrying out a thorough deafblind assessment, pages and pages of information amongst which recommendations for important alterations to my home.
The deafblind assessment should have been carried out as soon as I was diagnosed, https://www.gov.uk/government/publications/deafblind-people-guidance-for-local-authorities it took six years and as if that wasn't bad enough the report was presented to Occupational Therapy (OT) for them to advise I looked ok and therefore all requirements recommended in my DeafBlind Assessment were ignored!
Thankfully my family, with the help of Sense took the matter further and another three years later the alterations were carried out.
The second scenario and one many with my condition will be aware of are the never ending assessments insisted upon my Department of Work and Pensions (DWP) for Disability Living Allowance and more recently Personal Independence Payment (PIP) again carried out by professionals who cannot possibly know about every possible condition and as a result regularly make inappropriate awards.
How much time do all these appointments and assessments take, how much do they cost, how much distress do they cause patients like myself.
How easy would it be to have all my data on a screen, on a memory stick, even on my smartphone for me to share with the parties that need to know all the facts about me.
There wouldn't need to be assessment after assessment by people who really do not know my situation. I wouldn't have the stress and anxiety of continuously explaining myself and taking unnecessary time that could be better utilised.
My experiences make it very obvious there is little communication amongst the various departments and teams which clearly makes life unnecessarily difficult for us all.
Digital data seems so obvious, makes life so much less stressful for the patient and frees up time for the professionals to do what they do best and treat patients.