Indeed back in the 19th Century it was Helen Keller who stated “DEAFNESS SEPERATES US FROM PEOPLE AND BLINDNESS SEPERATES US FROM THINGS”. Back then she was right, she lived in a time where there was no assistive technology to help her live her life and having read about her since my own deafblind diagnosis it is fair to say she was one determined and inspirational lady.
I have often referred to both Helen Keller and Laura Bridgman before her. They both found a way to communicate and to make the most of their lives.
How we have moved on, I cannot imagine the isolation and frustration they would have endured.
Today there is no need for anybody to feel the separation/isolation that was experienced back then.
My disability isn’t the only issue when it comes to accessibility, more often than not I have been the educator.
The problem with this has often been those older than me, more educated or more senior than me can appear to have a problem listening!
When I was at a mainstream primary school as a deaf youngster I was very well supported because my teacher of the deaf understood deafness, equally my VI teacher knew her stuff but put the two together and both used mainly guess work to support me!
Being deaf meant I used hearing aids and a radio aid to access sound, the rest of my support was from people who for me were both patient and kind, providing me with confidence and the ability to be included in all aspects of mainstream school life. I was not seperated from people.
Early access to sound and appropriate support enabled me good communication skills which I used to tell my educators and support team what I needed particularly as my sight failed, the question again was were they listening?
The blindness diagnosis alongside deafness was beyond challenging and at this stage my support system began to creak and fall apart in a number of ways.
I was provided with a VI teacher (visual impairment) an older lady who was sympathetic and good at her job but knew nothing about deafness and as time revealed she was a bit of a technophobe, this was a real problem as it had become very clear to me that technology would be my way of accessing so much. I did eventually get a teacher who specialised in deafblindness and she was great but I only had access to her once a term!
Only 10 years ago many saw modern tech as ‘flash’ and inappropriate for school whereas I saw it as my way to be inclusive. I didn’t have to stick out like a sore thumb and I could make lessons individually accessible. Fellow pupils did not have to put up with large text or contrasts they didn’t want because all adjustments were made by me for me.
I became knowledgable about assistive tech by accident really and I applied that knowledge to my schooling. Unfortunately many educators stuck in their ways would openly admit they “don’t do technology” but do they know how much that holds people back?
I am delighted to hear that younger kids living with usher syndrome are using modern technology like iPads and MacBooks in school, also lots of apps to access eduction, enabling them to not only fit in but to be active achievers in mainstream environments. Things are moving on nicely but there is still so much more to do.
I no longer feel separated from people as although every morning I wake up a deaf person I soon fit my smart hearing aids and I am able to access sounds that make our world go round and I am a part of it, I am not isolated unless I choose to be.
Blindness is different, definitely the more challenging condition, particularly being combined with deafness but I refuse to be separated or isolated from things so I have embraced technology.
I am an ‘Apple Fangirl’ I don’t say this because no other tech works I say it because it works best for me.
Apple products have some amazing built in accessibility features which I am very familiar with and they have got better and better forming my hub for inclusion, the ultimate icing on the cake for me is the connectivity to my smart hearing aids, GN Hearings LiNXQuattro’s.
Using my iPhone I am able to access numerous apps made to make life easier for the blind, some of the best made by Microsoft. Without my hearing aids being bluetooth connected I would not be able to benefit from some of these apps which use audio description meaning I need a decent level of hearing, massive thanks to the team at GN Hearing for their innovative products.
The accessibility tools I use are all mainstream so useful and widely used by many it remains that all too many websites are not accessible or set up to enable full use of the built in accessibility features on most digital devices.
This Global Accessibility Awareness Day I’d like people to see accessibility as a doorway to inclusion, my wish would be for people to think about accessibility in everything they do. It is not just about getting in and out of somewhere it’s about everything, it’s a part of everything, it should be at the top of any to-do-list as it matters to all of us.
It should never be if but how!
San Francisco in November was an amazing experience, not just because I got to speak in Silicon Valley to some of the very top people in digital at Qcon I also got to re-visit my friends in the Accessibility Team at Apple Cupertino and I got to learn so much more.
I did a short informal talk about how and what accessibility features I use to some of the team, some I have met before and to a few new faces, we also discussed the new apple accessibility website.
I was able to speak about features I like, things I don’t and to pass on some great ideas from those around me, in the hope we can all do our bit to make things even better not just for the Usher Syndrome community but for everybody. If it works for minority groups it will work for the majority.
We then had a great questions and answers session. I love this part of my work, the more curious people are the better the understanding of need and the better result for the end user.
Apple products have enabled me to do so much so far. I am proud to be a small voice that gets listened to and am very grateful of the time spent with the team in Cupertino.
I was delighted to speak in great detail about the importance of ‘iPhone ready’ hearing aids and what that can mean to the deafblind, deaf, hearing impaired, hard of hearing - whatever term used, this connectivity is fantastic.
Forty four different types of hearing aid now ‘work’ with iPhone which is awesome. The one question I didn’t ask and which I wish I had is how many of the forty four are also ‘Applewatch ready’ as that really is the icing on the cake for the deafblind, with it’s prominent haptic abilities (vibration alerts on the wrist) and what for me make life a little safer and are very reassuring. I love the fact my Linx2 have direct connectivity to all of my apple products including applewatch.
This whole conversation really got me thinking about how amazing my hearing aids really are having direct that connectivity and what it all means to me.
I think knowing just how much I benefit from these things makes me feel really frustrated for the many people I know who could also benefit as much from my set up / toolkit.
The more I looked at the list of forty four the more annoyed I became.
The main reason being, the number one brand provided by NHS England does not have even one model, yes ‘NOT ONE MODEL’ on that list of forty four meaning millions and millions are missing out not just on best technology but on enablement and inclusion to carry out so much more than these now very outdated and out performed hearing aids.
Neck loops and faffing around are simply not good enough anymore, particularly as incredible assistive technology exists with built in connectivity and has done so for many years now.
Neck loops are fiddly and easily misplaced by the deafblind. Many don’t offer direct connectivity and are anything but inclusive and most have to self fund these extras too, also radio aids to assist with hearing in more challenging situations like meetings, classrooms, offices and the various other places not environmentally friendly for hearing aids, more cost and often to the individual.
Even with these things in place it is often not enough and then comes more expense for Government Services (Access to Work) who will need to fund STTR each and every time to enable accessibility.
How complicated is this system?
An up to date pair of smart hearing aids is the answer potentially saving a fortune.
NHS England need to think about ROI when providing hearing aids. Something even as simple as being able to use a telephone can give so much more in the way of enablement also employment, resulting in less unemployment, less mental health issues and most importantly less isolation.
There is no price for confidence so NHS ENGLAND isn't it time you considered how far technology has come, consider all the things it can do and enable your patients.
It is a fact, confirmed to me by my deafblind trained social worker that all deafblind people should be issued with two pairs of hearing aids and two pairs of reading glasses because of the impact of dual sensory loss and the complete reliance on assistive technologies. This is detailed in my own personal Deafblind Assessment.
Sadly it seems few Health Authorities are aware or do they simply just ‘turn a blind eye or a deaf ear?’ Many in my position do not have two pairs of hearing aids and even worse often have hearing aids that are years old, denying them the opportunities to connect with modern enabling assistive technology, this really is not acceptable.
Perhaps when considering that each and every deafblind hearing aid user should have two pairs of hearing aids, instead provide one pair of modern smart aids enabling an exceptional hearing experience, also enabling locational sounds, access to speech near and far, to telephones, to access not just the sounds to stay safe but to understand them, to hear inside what is happening outside, to adjust and understand environment, also to enable control of hearing aids via apps, all of these things all assist with the challenges of deafblindness. Simply insist the hearing aids are insured.
I mentioned the add ons that dated hearing aids require like neckloops, radio aids. My hearing aids need neither, sound is streamed through the outstanding connectivity from iPhone to hearing aids and my iPhone even acts as a microphone.
I was told some months ago by an audiologist the reason people with deafblindness who choose to have cochlear implants will usually get funding for two at a cost far exceeding that of top of the range hearing aids is to enable locational sounds for safety - shouldn't this be the same for hearing aid users?
Best access to sound for safety reasons should be all, not based on which type of hearing aid required. Safety is safety.
Outside can be a very frightening place when unable see or hear danger and not just for the deafblind person but also a potential danger to others.
I used standard issued NHS hearing aids from 18 months old until I was almost 21years old, I could access sound, I learnt to speak using those hearing aids and benefitted from all visual clues.
I was very typical of a deaf person, I coped ok. However since my Usher Syndrome diagnosis at 12 years old and being registered blind at 14 years old I felt more deaf, I struggled, particularly with tiredness. Back then I didn't really know why. I was told ‘Usher Syndrome is exhausting!’.
Today it is obvious, I could no longer lipread very well or benefit from facial gesture, from body language or from the many visual clues deaf people use. I had to completely rely on my hearing aids and they just were not good enough.
Sadly there are many struggling along just like I did but what makes it even worse is they are now much more aware of what ‘Smart hearing aids” can offer they just cannot access them!
It is time for NHS England to not just be aware of the everyday challenges to those living with deafblindness, the real impact blindness has on somebody already deaf, how isolating a condition it is then it becomes clear to see that each person should have access to the very best in hearing aid technology.
Helen Keller’s quote from all those years ago ‘Blindness separates people from things, deafness separates from people’ is very true, however best technology can now not just ease isolation but enable inclusion.
I feel very privileged to have the very best in hearing aid technology, it enables me to be confident in my work. I also feel very passionate that others like myself should also have access to the best.
My smart hearing aids are more than just hearing aids they are literally my ‘Linx2Life’.
Smart hearing aids and apple products are accessibility tools for people like myself, they are not flashy gadgets they are essential for the everyday challenges faced.
I'd like this post to reach Goverment, to be read by NHS England, Access to Work, Social Workers working with the deafblind, Audiologists with deafblind patients, Occupational Therapists working with the deafblind and to anybody else I have missed in the care sector.
We have to make life inclusive.
San Francisco had been on my long list of places to visit and I was lucky enough to go on a girls only adventure with Mum and my younger sister Lily.
Going away and out of my comfort zone can be very stressful, whether I am alone, with Unis or with others.
To deal with the anxiety I often feel I use my travel experiences as a mission to find who and what is accessible in my world.
Whilst I’m concentrating on the good, bad and acceptable it gives me something to think about rather than feel anxious.
Our journey begins at Heathrow Airport and our flight with Virgin Atlantic. Virgin were advised I am deafblind on booking and that safety instructions in large print be made available. They were also advised I am most comfortable to board first to avoid the crowds which are uncomfortable.
I was escorted to the aircraft, Mum and sister following behind. I was introduced to two staff and shown to my seat where I was made comfortable and provided with safety instructions in both braille and large print - impressive.
The nearest toilets and emergency exits were pointed out, not too far in front of me and button to call for assistance.
Very good, it would have been good to have the food menu in larger print as I did have to ask for help in choosing my meal, handy to have Mum and sister to rely on here so a little room for improvement but not bad.
It was a long journey, almost 11 hours.
It wasn’t too bad as we arrived in a warm and sunny San Francisco, 8 hours behind UK time so quite tired but adrenalised to finally be there.
This is the main reason I did not take Unis, long journey, time difference and we were only there for 6 days. It would have been a lot to ask of her so she stayed home with my Dad and had a mini break from work!
Unis always gives me a hard time when I leave her, sulks for days when I get back, it was for the best, she just doesn’t realise it!
I was disappointed with SFO Airport, it did not have an assistance lane in the arrival hall. I find crowding very stressful, especially when I am in unfamiliar surroundings, its very disorientating.
I was glad to have Mum and Lily to guide me.
I was really happy to arrive whilst it was light so I could appreciate the views from the taxi drive on our way to our hotel at Fisherman’s Wharf.
Check in was pretty painless and we were soon in the lift to our room.
A nice room but it was so dark, dark walls, dark furniture, and dark blinds. Thankfully the bedding was white so I could at least see the beds ok.
There were lots of lamps around the room but not a ceiling light so the dreaded uneven light that my eyes hate, a kind of dusky light.
I had several bumps and bruises from that room set up #ushersyndrome #issues.
I really liked the area we stayed in, it was quite easy to get around by public transport using my applewatch.
At the core of my visit was a trip to the Apple Campus in Cupertino which was a bus journey followed by a train trip. Pretty easy and pain free travel using my cane.
I was impressed with the first bus stop I needed, it had both visual and audio description of which buses go where and when. I didn't find this function at the train station but did find a very helpful employee who showed me to where I needed to be.
Yes, I am the deafblind one but I like to be as independent as possible so Mum and sister let me find out what I need to and of course if I need help they are there.
The train was great, really clear audible information from what sounded like a real person rather than the recorded voices on public transport in UK.
I liked to hear a real person sounding cheerful announcing each station as we approached it.
We disembarked at Mountain View and were met by a cheerful English driver who drove us to the Apple Campus. It wasn't too far.
Having been dropped off the driver made sure we were okay checking in and met with a couple of the staff we were meeting.
I was a quite overwhelmed to be visiting the Apple Campus, it was all quite surreal.
We got lunch and sat out in the sunshine speaking to various people from various of the teams based there and of course we discussed my http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days was an amazing experience for me.
We got to look in the newly refurbished Apple Store, I really like the shop, the lighting was warmer than lots of shops here in the UK. The new large screen was awesome. I also particularly liked the new shelving of the accessories, right height and so easily accessible, perfect.
Lastly a meeting with those who wanted to meet me, my last chance to talk about accessibility and how I and people like myself use apple products.
We were at the Apple Campus for the afternoon, time flew, it was an amazing experience, a real WOW and something I’ll never forget.
Taxi journey back to Mountain View and the train back to the City in the dark!
The train was well lit and busy but worked fine for me.
The bus journey back to Fisherman’s Wharf was straight forward once I had found the bus stop, this was not ‘Usher Friendly’, at least not the way it is here in the UK.
Bus Stops in San Fransisco are not always obvious like in the Uk. Some do have proper bus shelters, some appeared to be just poles with small numbers stuck on them or bus stop written on the road. Thankfully I wasn't alone or I would have really struggled, particularly in the dark.
On the whole public transport in San Francisco is good, however I found road crossings are not ‘Usher Friendly’.
Here we have ‘zebra crossings’ which have flashing lights and they're very obvious, even to people like myself in San Francisco there are some pedestrian crossings which I understand however there were also crossings indicated by two thick white lines about 8 feet apart, however these were not obvious to me and I wasn't sure when it was safe to cross or who's right of way it was. I was confused and Unis would have bee too.
We went shopping in San Francisco and I know all my Usher friends in the UK will be interested to hear that both Hollister and Abercrombie and Fitch had decent lighting, not the awful darkness we endure in their shops in the UK.
I used my cane a lot in the City centre and on the whole felt very safe. We navigated around on foot to the various galleries and places of interest using my Applewatch.
As we were only there for a short time we decided to book a one day bus tour around the City. This was a disappointment as on boarding the bus I advised the driver of my deafness, I was not offer a loop system or anything else to give me access to the onboard guide. I definitely missed out on the audio, I relied on Mum and Lily to fill me in on what was being said. I’m pretty sure we all missed out because of that.
Fisherman’s Wharf was a buzzing area, we walked there and enjoyed some sightseeing and a boat trip around the bay, under the Golden Gate Bridge and around Alcatraz. It was a beautiful sunny day and I was lucky enough to actually see sea lion’s swimming alongside the boat. I felt really lucky to actually see them as each time Lily or my Mum pointed to them and I looked they were gone. I felt so sad but it was almost as if they knew I hadn't seen them as they popped up right in my field of vision just before we docked, it completely made my day.
I found San Francisco to be a friendly place and I would love to return, see and experience what I missed.
I know people with Usher Syndrome that live there who had hoped I was doing a public presentation, sadly not but maybe one day, fingers crossed.
We left our hotel with heavy hearts but I was looking forward to being reunited with Unis.
The check in with Virgin Atlantic at SFO Airport was straight forward and thankfully security not too stressful.
Again I was boarded first and given accessible safety instructions and made comfortable. Virgin were very good.
Now home in a very chilly Berkshire where Unis has stopped sulking and its back to normal, that said my 6 days in San Francisco have given me memories I’ll never forget.
Besides a beautiful City I got not just a visit to the Apple Campus but also to to meet and speak to some amazing people, a real WOW experience and a big thank you to those who made it happen.
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.