A A A Accessibility A A A A

My outward journey to Las Vegas was nowhere near the way it should have been.

The necessary call to ‘special assistance’ had been made by my mum prior to the trip and my specific accessibility needs spelt out then, again at check in and still sadly the necessary provision was not in place.

Whilst my condition is rare my accessibility needs are not overly out of the ordinary:  

I personally need safety instructions I can read, so large print and a one to one, maximum 5/10 minutes explanation as to where I can find the emergency exits, toilets and assistance button.  In addition to this I would need a menu with large print.

From a safety and comfort prospectus it would be preferable to be seated in a bulkhead seat for several reasons.  firstly toilets tend to be near bulkhead seats, secondly I am quite clumsy not being able to see or hear properly I then have a little more personal space and therefore less likely to knock into or irritate other passengers and thirdly if I am travelling with my guide dog she needs that extra space.

As a result of the unacceptable lack of provision and discussion with one of the onboard staff I was assured my return flight would be stress free and that I should not worry.

My experiences widely publicised on social media again I was assured my return flight would be better!

Once again at checkin I checked my disability was recorded in the booking which was confirmed and I was asked if I needed assistance, calling for a wheelchair!  

This awful stereotyping and assumption that all people with a disability need a wheelchair really needs to change.

Naturally I did not use the provided wheelchair but did take up the assistance in getting through customs relatively stress free.

I boarded the aircraft with my cane in hand and was shown to my seat and that was that. 

No accessible safety instructions or anything else, in fact worse as the entertainment system was not working so the staff did a manual briefing of the safety instructions.  I am fortunate to have the very best in hearing aid technology however, I could not hear the verbal instructions very well and certainly couldn’t see the staff member doing his demonstration.  What I did hear was things like ‘Your nearest exit can be found here and here’ well, where is here? not useful at all to somebody who is deafblind or blind - this is certainly something that needs to be addressed.  Everybody needs full access to safety instructions.

Again the staff member spoken to was shocked and surprised that according to her ‘iPad’ I was not noted as having a disability at all and she showed me her iPad. It occurred to me then, why not have an iPad available to people like myself with the safety instructions on it, then each individual could then adjust text to their personal needs, simple! 

Evidently any person travelling with a disability should have a small sign beside their name indicating such - strange as ground staff had confirmed it was on the booking at checkin.  At this stage I was informed BA could only identify me as either deaf or blind not deafblind as their system would not allow it - SPEECHLESS, clearly my needs could never have been considered appropriately with this system.

Needless to say my experience with BA had not been a good one and I am sad to say exactly the same happened to me on a flight to Hong Kong in 2012, back then I was assured the system would change!

I travel a great deal as do many with my condition and the service I endured was not acceptable and as a result I have publicised my experience in the hope BA will consider the deafblind and look to address the unacceptable treatment I endured.

I am absolutely delighted to say today I received notification from BA that as a result of my experiences the following has happened:

BA’s Customer Services have conversed with their both Policy Manager and Facilitation Manager and as a result their system will now allow both deaf and blind indicators on their bookings, sadly not deafblind as their system won’t allow it at this time, hopefully this will come, but this is certainly far better than previously at least now cabin crew will know when a passenger has more specific accessibility issues.

I am oral however some with my condition (Usher Syndrome) may need safety instructions in braille, some might use sign language.  

I think it would be prudent of airlines to consider communication needs also.

 I’m told it is now possible to select both deaf and blind when booking too which is great news as many deafblind are unable to use a telephone to advise of their needs.

Of course this hasn't made my experience any better but it has given me faith that I have been listened to and that BA have immediately looked to improve their service for all deafblind travellers and of that I am eternally grateful. 

So, again thank you to social media for enabling me to get my message across to British Airways and to British Airways for listening and acting.

Thursday, 19 May 2016 07:55

Global Accessibility Awareness Day 2016

Usher Syndrome for me means my whole world is accessed via accessible assistive technology.

A year ago to the day I was fitted with Resound Linx2 hearing aids.  It has been quite a year, a year that I have experienced some amazing things.

I was born deaf so very used to wearing hearing aids and I coped pretty well.  Great support as a child, I could speak well and on the whole was doing pretty well at school, I accepted deafness, I knew no different.  However things changed upon my usher diagnosis.

As my sight went I felt as though my hearing had deteriorated too, thankfully this was not the case but in actual fact I had lost my ability to hear with my eyes.  I couldn't lipread, i couldn't see body language or gesture properly.  I visited audiology to be told my hearing was stable so I continued to use the same hearing aids, I then realised how much I had relied upon my vision to help me hear.  I could no longer see much and I was really struggling to hear and there I was expected to just get on with it.

To say it was difficult is an understatement so I isolated myself, the world was a frightening place when you cannot see or hear.

I look back now and it makes me angry to think this is so unnecessary knowing so much more about the available enabling technology.

Had I been fitted with Linx2 when I was diagnosed with Usher Syndrome my blindness would not have impacted so heavily upon me.  The clarity of these hearing aids, their ability to enable spatial awareness, to have several settings changeable depending on environment instead of feeling more deaf and more isolated than I had ever felt as a deaf person I would have felt more confident in my ability to hear and to trust my hearing.

Linx2 bluetooth connectivity has enabled me to use a telephone for the first time in my life and to hear clearly, I was 20 years old before I could make a phone call with confidence and to hear the voices of my family properly, things most people take for granted.

I can now localise, I know where sounds come from.  Before I was blind I would hear sound and often need to look all around to find the source, looking all around is no longer an option with only 5 degrees of sight left so this feature is priceless.  I can be out and about with guide dog Unis and hear the sounds of danger, I can also hear the sounds I've missed over the years, I can hear birds sing and dogs bark, I can hear aeroplanes and the more important things I can hear voices, the voices of my family so clearly.  I can hear new tones, I hear music, I can hear mood and picture atmospheres and so much more.

Blind people rely on their hearing and deaf people on their sight and yet deafblind people like myself are expected to "make do" to get by.  As if life isn't tough enough with dual sensory impairment, surely we should be entitled to technology that will enhance our lives, to enable us to get on as best we can.

Linx2 enable me to access so much more.  With full connectivity to my iPhone and applewatch I can now access lots of useful apps developed to assist the blind, something I could not do with my old hearing aids.  

For me blindness is the most challenging part of my condition, there is no cure for it, it affects how I personally access information and also my mobility.

There is no cure for my deafness either but the hearing aid technology I use has been life changing so not the issue it was for me.

My interest in assistive technology and accessibility heightened on my Usher Syndrome diagnosis.  Being only 12 on diagnosis and then registered blind at 14 I had already begun strategising and experimenting with assistive technology as it enabled me to "fit in" as best I could.  

I see myself as fortunate to be born at a time when technology was good and am thankful it continues to get better and better, sadly for many accessing the best enabling technology is all too often out of reach financially which is very sad.

In my mind best technology is the only way forward and long term would work out so much more beneficial to all.

More people with Usher Syndrome would have the ability to be active members of society.  Able to get out and about with confidence, work in different environments, use a telephone, communicate confidently rather than be home, unemployed often feeling isolated and depressed.

Technology should not be "frightening" to anybody it should be embraced by all it is not just fancy gadgets for people like myself, with other disabilities and for the elderly it is enabling.

I am deafblind, I am 21 years old and technology has given me my life back.

I am hearing with the most amazing technology, technology I'd dearly like for others who would benefit from them.  I am able to access lots of information via my iPhone and Applewatch, I am even seeing things with my 5 degrees of vision, things I haven't seen in years via the Ricoh Theta s 360 degree camera.  This little camera enables me to take a 360 degree picture which appears on my iPhone screen, I can move the picture around with my finger to see a whole screen of information.  A strange experience for me the first time I used it but an amazing experience I can only describe as seeing an atmosphere, zooming in on every area of my screen.  It gives me a memory of peripheral vision, something I lost almost 8 years ago, absolutely amazing.

I cannot imagine my life without my trusty MacBook or my iOS products they enabled me to access my education, to reach out to others and to maximise my abilities as a deafblind person and more excitingly these technologies keep improving 

I love teaching others how to use the technology I am lucky enough to enjoy, I want others to understand what technology offers and I want those in technology to understand the often unique needs of people with sensory impairment, particularly Usher Syndrome and deafblindness. 

Whilst accessible technology is available and amazing it remains that far too many websites are not accessible, even with fantastic technology.  This is an area that needs to improve and an area that interests me.

There is no reason why it remains that many educational intranets and government websites are inaccessible.  Still many of the most important Social Media platforms are not fully accessible and this needs to change.

I myself was denied my University education and in this day and age this is absolutely not necessary.

It is refreshing to know there is now a Global Accessibility Awareness Day as it must means Accessibility is firmly in the minds of many going forward and this is absolutely good news.

A really is for Accessibility...

Wednesday, 30 March 2016 21:11

Why Access to Social Media Matters

I have been asked many times what my favourite social media is and why and my answer is always Twitter.

The reasons I like Twitter are firstly from an accessibility view point.  There is choice, there are several Twitter apps each offering something a little different and those little differences mean more chance of there being something that works for those of us with varying needs like blind but with low vision, hence able to access text if the right size, colour and contrast, bearing in mind biggest it not always best!

Twitter is an excellent platform for accessing and sharing information also for finding like minded people and for support.

Through blogging and networking mainly using Twitter as my favoured platform I have been able to reach out and communicate with people and companies I would never have met without accessible social media.

I have been quite overwhelmed on occasion that people from all over the world and from fields varying from technology, accessibility and healthcare have taken an interest in my work and remembered me in such a way that they post and tag me in things they feel may be useful or interesting to me and my cause which is quite incredible and I am very thankful of that consideration.

My passions continue to be to raise awareness of Usher Syndrome, it's many challenges, to recognise accessible and enabling assistive technology for those with sensory impairment and test if possible then share my findings.

Twitter is so easy to access, simple rows, easy to scroll up and down unlike my least favourite social media platform, Facebook.

I blogged a great deal about Facebook last year and I was very pleased to see the long awaited arrival of dynamic text for those of us with limited sight.  That said they still have a long way to go to make accessibility easier for people like myself, particularly on mobile devices.

Facebook is very useful for specialist support groups, bringing people together, however if those who need the support cannot access it it becomes frustrating and quite a let down to many in need.

I remember there used to be more than one app for Facebook but that no longer appears to be the case, which is very unfortunate, we are all different and all like choice.

Facebook changes / updates regularly but remains very cluttered and hard to navigate.  

It seems Facebook sees blindness as total and that voiceover is a requirement even though there are so many with low vision.

The low vision group would include the ageing. Then there are those with Usher Syndrome, deafblindness some who cannot access sound so voiceover not an option.  These people are therefore reliant on accessing visually and it is very difficult amongst the clutter.  

There needs to be options to invert / change colours at least.

If you can imagine looking through a straw and actually realising how little of a screen you would see at any one time then you can imagine the difficulty experienced on a cluttered screen, it's exhausting.

I guess frustration best describes Facebook and it's very disappointing as so many vulnerable groups rely on it to catch up with others when they cannot get out and mix easily.

Facebook make regular changes and I noticed are looking to make more improvements including describing pictures, which is great for those who need it but again won't help the deafblind.

I feel Facebook should be a friendly and easily accessible place for all to find friends or support groups, here's hoping this is coming too, until then its “Frustrating Facebook.”

I am very fortunate that I have access to quite a range of accessible assistive technology and all are mainstream products which really goes to show how far things have progressed for people with sensory impairments, however so many apps and websites have a long long way to go to allow full access to all.

Tuesday, 15 March 2016 18:38

Applewatch - Thank you Molly

My son read Molly's applewatch blog to me last year.  She made everything sound so easy and to be honest I didn't believe it.

My son kept on and and and on about me getting one as I had become quite a recluse.

I could always find an excuse not to go out, my neighbours helped out with shopping and my son visits regularly.

I have had an iPhone for just over a year and learnt how to use it just by playing with it.  

A couple of years ago I was assessed by Guidedogs for a dog but was told I couldn't be considered for a dog until I had some sort of routine as the dog needs to work.

To be honest it put me into a state of depression and I withdrew further.

I was trained to use a cane some years ago but didn't like it and didn't feel I needed it.  I was definitely in denial.

Anyway, I had been unhappy for many years.  Usher Syndrome has isolated me and I let it.

My son advised me of the project Molly had put together through her charity and he more I read the more I wanted to give the applewatch a try.

I admire Molly, so young and doing her best to live happily and to help others, she is definitely an inspiration to me.

At 54 years old I am not an expert in technology but I'm learning and I quite like it, I have surprised myself with my iPhone, set up my own email and a few apps and games with a little help.

I decided to apply for the applewatch thinking I'd have no chance, as I don't have a regular routine, haven't even ventured to my local shop on my own for probably 5 years.

I'm sure there are lots of people hoping to get an applewatch and  Molly Watt Trust is a small charity and fundraising isn't easy.

When I got the email to say I had been approved for a watch and after a few formalities it would be sent to me I was in shock, I hadn't expected it especially as at this stage I knew MWT have asked for feedback to help with fundraising and I asked to be anonymous - it wasn't a problem.

I received my applewatch in January, it was like Christmas.  I charged it and set it up on my own, I fiddled around with it, sorted out the accessibility settings and changed the faces.  My son did help me with a few apps and applepay then he helped me set up a route on maps for me to walk on my own with my cane. He was more excited than me.

It took me 2 weeks to actually walk that route, I had sleepless nights thinking about it.  I was fighting with myself, I wanted to do it but I was frightened and hated the thought of being seen with my cane.

I planned the walk over and over until I finally took a deep breath and just did it.

The route was to my local shops, just over a mile a way.

At first I was really slow and apprehensive but the further I got the better I felt, the watch guided me with taps on my wrist for left and right.  I made it to the small supermarket and I felt so adrenalised I wanted to walk and walk.  All of a sudden I didn't care if people were looking at me, I felt confident, I felt great.

I decided to go in the coffee shop next door something I'd never have done for fear of knocking something over, I walked in, it was quite empty, I ordered my coffee and the young girl asked if I wanted to pay with my applewatch, I stretched out my arm and beep, done.

I sat down and my coffee was brought to me.

I couldn't believe myself, I was smiling to myself for the first time in a long time, I had done it and I did it for myself.

I text my son from the coffee shop, he didn't believe me so came and met me.  We both cried, silly I know but a big deal for me.

My son took me home and we talked about technology and how it can change people, enable people, just amazing.

That was the first time and now I go out everyday, I feel so much better for it.  No longer a prisoner in my own home, I can get from a to b fairly safely.  I do get a bit  stressed if it is busy so I avoid busy times.

For me this is just the beginning, I will contact Guidedogs for the blind again perhaps in the summer when I can say I go out regularly, we will see.

For now I just want to thank everybody at Molly Watt Trust for making this happen and for Molly for being such an inspirational young lady.

I will write again soon.


Wednesday, 09 March 2016 20:17

San Francisco Adventure

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.

Wednesday, 09 March 2016 19:01

Effortless Applewatch One Month In

So I've now had my Watch a month and the best way I can describe it is 'Effortless.'

When I first got it all in its beautiful packaging it felt like Christmas again, all thanks to the Molly Watt Trust's GlobalGiving Project.

I was chosen as one of the first to trial this idea and wow I'm very thankful!

I Have Usher type 2 so born partially Deaf and now slowly losing my sight due to Retinitis Pigmentosa, that is Usher Syndrome.

I'm pretty much the worst for missing calls or notifications and emails simply because I don't hear the pings and don't see until I check myself usually just before bedtime.

Well since this lovely piece of tech came into my life that is now a thing of the Past....

'Haptic's where have you been all my life?'

So when I first got this all set up, I adjusted the font and display and synced to my IPhone 6, I turned Haptic's up and volume down ( I'm higher tone deaf so no point for me as I wont hear it) I was well away.

I downloaded some apps such as my Bank and Email also Around Me so I could use it with Maps to use as a walking Sat Nav, also BBC news app.

All of these worked well for me the At a Glance I found really useful as well as the Call Feature as when I'm on a bus or the school run it isn't ideal with Guide dog in one hand, child in the the other so now in an emergency with just a quick click and a tap or even a 'hey Siri Call...' at my wrist I could call for help without being at risk. That was a huge biggie for me.

However for me there is one very big FAIL!  It is not the fault of Apple or the Applewatch but my hearing aids, they do not work with Bluetooth, no connectivity so I can't hear directly to my ear so I found myself holding my wrist right up to my ear looking abit 'James Bond esk' but not a great feeling trying to juggle everything child, dog and school bags it was abit of a pain but as I say not Apple's fault but the Oticon spirit Zest hearing aids supplied by the NHS so no perks which a real shame as I feel I could probably gain a whole different view had I had the right equipment.

Any way a month down the line the applewatch feels great it's amazingly light and easy to forget it's on my wrist until I get the helpful Haptic's reminder of something in my calendar or emails, and even to navigate to somewhere new, very useful In busy town centres when I just need to go from A to B without scanning around which causes terrible eye strain and headaches, Applewatch has helped stop this, no more scanning just relying on a simple tap or taps on my wrist enabling me to simply direct my guide dog left or right accordingly.

Pretty awesome and effortless for me, my daughter likes the drawing bit in the contacts with those who also have the watch she thinks its magic and cool.

I know I have a lot more to learn about my Applewatch and I'm sure in the coming months I will have more to report.

I'm feeling more confident and independent and feel with this technology and my guidedog I can become ever more independent, maybe a part time job soon.

The only snag I have are these 'prehistoric' hearing aids. Having hearing aids with full comaptibility would be absolutely awesome, I guess a girl can dream!

That said I love my new watch, it is more than a watch and whoever developed Haptics - Thank you life is definitely a little easier. 

I want to say Thank you to to the MWT Global Giving project for this awesome gift!

Thursday, 25 February 2016 16:41

When a Picture is more than a Picture

Taking a photo to me is not just a picture, its capturing a moment, capturing sight I no longer have.  

I take a picture and then take it apart to put it back together in my mind.  I zoom in, mentally analyse and take in each little part, put it together like a jigsaw puzzle and make a full picture. 

Slowly but surely I use my tiny amount of vision to form a mental picture that I can reproduce in art.

Whilst registered blind (legally blind in US) I do have 5 degrees of vision left in my right eye. 

I believe that being born deaf is why I’m a visual person, with such visual strategies, even though I’m now deafblind.  

Lipreading is all a part of hearing with your eyes when you are deaf but now deafblind I really struggle with lipreading so I’m now sort of transitioning to other coping strategies 

I now try to look at eyes as opposed to lips as I would automatically start trying to lipread which is very tiring to deaf people but absolutely exhausting with damaged eyes like mine. 

The small window of vision I have can be pretty useless, however I have found using my iPhone camera to take a photo of something like a menu or label makes that tiny print all of a sudden accessible. Sounds funny right? Using my iPhone to take a picture means I can use my fingers in a pinch motion to zoom in and move the screen around to view what I originally couldn’t see, simple, unfortunately it  doesn’t always work. 

Depending on the quality of picture or if its a picture of something moving the quality isn't always good enough to make sense of.

I have taken a fair few videos of Unis when out on a ‘free-run’ and I often like to as a hobby edit and slow them down. I also learnt that whilst viewing a video on my iPhone 6 I can zoom in. Quality isn’t always great on this if I have since edited the picture, but it’s enabling me to get a little closer to Unis’s flapping ears in the wind, or her wagging tail. I experience that moment slightly differently. 

I take a lot of photos. Yes I take a fair few selfies too! (cringe, I know!).

I store all of these and go over them regularly. I zoom in, I view them on my Mac, I might edit them a few times over and each time I see something different and very strangely I notice small differences   even though I’m blind!

Being someone who’s creative and often liked to fiddle with colours and doodles, I guess this is fairly natural. 

I also see the benefit of this with my condition.

I attend lots of events, I nearly always take pictures if I can. I always take more pictures than I need to. When I am taking pictures I only have to focus on one thing. Thats my phone screen, and the section with the camera ‘button’ (obviously iPhones being touch screen, it’s not a literal button). 

I feel less stressed focusing on the one screen and taking photos. Whilst I experience the whole atmosphere on a holiday, or at an event. I am also simultaneously capturing it. I love taking  panoramic pictures too. 

Later I will zoom in, review, delete and edit.

Taking a picture and zooming in is almost the way I see a person’s face now.

When I look at someone’s face I now only see one eye and maybe an eyebrow, the rest is a blur on a good day I might have the occasional blind spots too.

In order to view a whole face I move my eyes around to scan to the other eye/ eyebrow, above to the hairline, down the nose to the lips and all around to capture the hair, quite exhausting typing it, but thats the process I go through to see now and yes, it’s exhausting. Once I’ve scanned once or twice that face is memorised in my mind.  I  will have remembered certain features, not always all, depending on lighting and positioning. 

However, if I was to take a picture of a face using my iPhone, I zoom in, split the picture, and view the eyes, the eyebrows, the nose, etc and piece it all together.

During my A Levels, I painted a fair few portraits to try and interpret how I view a face. My main pictorial outcome for people to understand in an abstract sense was a jigsaw puzzle. I see a face, but just the one piece at a time. In my mind I am piecing together the jigsaw puzzle of someone’s face.

Taking a picture allows this. Photo’s allow me to interpret what my eyes alone cannot. 

Being on holiday, amongst the smells, various textures, tastes and aural surroundings the pictures help me complete the experience at the end of the day/ holiday. 

A selfie helps me complete my make up!

A recent experience was San Fran, more of this in another blog:

San Francisco was amazing. I fell in love with the city and all coping strategies kicked in and along with Mum and Sister I was able to quickly adapt.  

The people were friendly and once again I was looked after using my cane wherever I went. The weather was beautiful. We went on a tour bus and ventured around to ‘see’ as much of SF as possible. I felt happiest I had been in a long time. I took full advantage of my camera on my iPhone. 

I have always been creative and photography was not always a strong suit of mine, taking photos has always been a strategy for me to zoom up close after taking a picture. 

Thanks to my iPhone I actually did see the Golden Gate bridge, all 1.5 miles of it via pictures and zoom. 

I take a fair few panorama pictures, at first I wasn’t sure why accept I liked them and what they allowed me to see when I zoom in.

It only occurred to me recently that taking a panoramic picture which involves standing and viewing one view and gradually rotating around creating a long stretch of a view in one. Well, with my restricted field vision, this is very beneficial. 

My lack of peripheral vision means I cannot take in one landscape at once, using my fingers to pinch in and out of a landscape (like I do with any picture,) means I am breaking up the image to fit into my small 5 degrees and moving about gradually to fully view an image. 

Panoramic artistically create a long view, two perspectives in one. For the detail I zoom in to fully appreciate it, I almost feel like I have peripheral vision again. 

Two perspectives on one screen create more of a memory for me of these amazing experiences.

Pictures mean a lot to me.

Pictures capture more than a moment, they become treasured memories that Usher Syndrome cannot take away.

Wednesday, 10 February 2016 20:46

Applewatch Awesome but Hearing Aids Disappoint

I recently received an applewatch from The Molly Watt Trust, via their GlobalGiving project.

I love gadgets. I have ushers syndrome type 3 which is gradually robbing me of both my hearing and my sight.  My vision is now about 3 degrees and my hearing which is moderate to severe and will get worse.

There is nothing to aid my eyesight but thankfully I use NHS Phonak hearing aids to hear, in a small way they compensate a little for my blindness, life is very challenging.  I also rely on Jason my guide dog.

As my condition deteriorated I was unable to continue with my career.

As a result I now keep myself busy travelling around carrying out charity work for various charities.

Travelling is very challenging, however, I am very determined.

I recently upgraded my phone to the iPhone 6s plus yes it's big but I can see it.  The accessibility is fantastic and there are so many useful apps.  I really don't know how I managed before.

I also have the latest Phonak hearing aids from the NHS and a Phonak ComPilot neck loop which works brilliantly with my iPhone and iPad so really important to me for simple things like taking calls while I work my guide dog with ease.  I can listen to music or watch a video on my phone in a crowded place or on the train, the sound streaming directly to my hearing aids.

I had read so much about the applewatch and couldn't wait to set it up and synchronise everything.

I’ve become quite good at ‘pairing’ and ‘syncing’ and I could not work out why I could not answer a phone call on my applewatch, I fiddled around, I contacted both Connevans and  Phonak, to find out what I was doing wrong to eventually be told by Phonak that their equipment is not compatible with applewatch I am absolutely gutted that I am not stream sound from the applewatch apps using speech, yes tactics are fantastic but being able to stream sound directly to my hearing aids would allow me full accessibility to many more apps.

I really struggle to hear a call on my applewatch also I don't really want everybody else to hear my conversations meaning I am missing out on accessibility that would make a difference to my daily life.

Thankfully the maps on the applewatch use taptics, something new to me and brilliant for the deafblind as it vibrates in sequences for turning left or right.

If I could get sound streamed direct to my hearing aids that would be perfect.

I am an independent guy and I like to plan as many routes as possible on my own, the last thing I want is to look vulnerable in a city with a guide dog.

My verdict so far,  "applewatch is brilliant, it is making my life easier" but Phonak hearing aids and ComPilot are a let down.

It is so frustrating that I could have the very best connectivity and accessibility but sadly not with the hearing aids and equipment I have .


Tuesday, 02 February 2016 15:05

Applewatch Accessibility and Connectivity

To quickly introduce myself, am Colin and I have Usher Syndrome type 3, the rarest of the Usher types.  

I recently received a letter to collect a package from the post office, pretty handy for me as its right beside the train station and I was on my way to Glasgow . 

I picked up the parcel and signed for it or should I say the postmaster did, very kind of him as he had spotted Jason my guide dog . 

I was very inquisitive as to what could be in that box and was wishing for the train to hurry up so I could open my parcel.

The train approached and I was on my way  another two hour journey to Glasgow, however, this time it was going to be a very exciting journey that would fly by!

As I opened the box I realised it was an applewatch.

I had applied to The Molly Watt Trust for an applewatch after reading about their current project https://www.globalgiving.org/projects/deafblind-need-access-to-life-enhancing-technology/ which came about as a result of Molly's outstanding blog showing just how enabling the watch can be to people with Usher Syndrome.

I am delighted to have received an applewatch from This project, I had admired the watch in my local Apple Store on numerous occasions after reading Molly's blog but couldn't afford to buy one.

My first impressions, very smart in black and very very stylish.

Fortunately I had my battery pack on me so figured out how to charge the watch with the magnet on the back of the watch - very clever and simple, I was impressed already.

I switched on and paired it with my iPhone very very quickly by following the simple steps and scanning my watch with my phone.

I then went on a magical journey sussing out the basics of the applewatch.

Apple products are brilliant, particularly their accessibility features, but are very expensive.

As I began to play and find out more and paired my Apps I realised not all apps swapped over from my phone as not all are applewatch compatible, hopefully more and more will be going forward, but I'm still very impressed.

I was struggling with the concept of how an earth can I zoom in but I am getting to grips with the zoom feature.

I was also excited to pair it with my Phonak ComPilot today so I can answer calls on my applewatch and hear audible apps via the watch rather than just my iPhone to my hearing aids.

The first day I found it a minefield of new and exciting features but very similar to the iPhone in many ways but I seriously can't wait to find out more about this incredibly useful, deafblind friendly piece of kit. Here's to day 2

Day 2 was very interesting as I found out I could change the clock face so for now it's Mickey Mouse.  I love the way you can change the style for every occasion . 

Also looking at the strap yet again you can tell someone has spent a lot of time thinking of a different solution to hide the strap by tucking it behind, nice touch . 

Yesterday's mission was to pair my Bluetooth hearing aids to my Phonak compilation neck loop this I did with a varying degree of success and drained the battery quickly as searching for Bluetooth devices generally does.  The end result was it works on music through my hearing aids but not on the phone perhaps I've got a setting wrong along the line.

Also playing with the applephone last night I realised all the watch settings are on the iPhone watch app so today I will dig deeper. 

Overall view for day 2 frustrated about hearing aid connection to applewatch but sure there must be a way to overcome this, on the plus side clarity is very very good.

I cannot get over how stylish it actually is and I need to find out so much more.

iPhone is not rocket science but a form of sequences just like all Apple products I just need to get used to where everything is.

Yesterday I thought I made huge progress as I set up a route and followed it to the letter. 

I set it up on maps on my iPhone then experienced the taps on the wrist to indicate right or left sounds like an indicator on the car, this is brilliant.

I also found loads more apps like a money converter calculator speedometer also city tours very handy on a city break.  I even managed to put voiceover on and put my screen lock on at the same time also my screen locked out which threw me out a bit! I got a friend to google this and soon put it right.

I got somebody to google how to sort it out and sorted it out on my iPhone, it's easy just go to the App. 

I can honestly say like all Apple products the more its used the better it is . 

I'm still learning and loving my new applewatch.

I find the Taptic feature on maps a godsend, being deafblind getting lost is easy, however, so far maps have been brilliant I'm getting from a to be with ease and accuracy.

I also like the gimmicks like charging the applewatch sideways and how  it turns in to a digital clock, very nice touch. 

Also been playing with lots of accessible new apps, the only problem, irritation is trying to get my Phonak hearing aids and neck loop to stream from my applewatch!

I notice Molly Watt uses ReSound Linx2 hearing aids which have full connectivity to all apple products so hopefully there is a way with Phonak, fingers crossed, I will keep tinkering.



Friday, 04 December 2015 13:59

"Access to Tweet, Tweet to Access"

I was delighted to see that at last Facebook allows dynamic text for those of us who use iOS and rely on it.

Finally those who had been isolated from family, friends and groups because of inaccessibility enabled.

Thank you Facebook for listening and acting appropriately.  

I still find Facebook difficult as the layout is continuously changing, there's no option to invert colours and the page is generally very busy which is a navigation nightmare for those with low vision, in my case only 5 degrees of vision in one eye.

It seems unthinkable in this day and age with the technology available that this was not in place long, long ago and without people like myself having to voice our concerns of isolation as a result of inaccessible apps, groups or websites.

I use social media a great deal.

I have used it at my lowest times to reach out to others.  

I use it to reach out to friends, to find friends, to share information and to learn about the things that interest, enable and enhance my life.

It is particularly useful for those like me who have a rare condition to reach out worldwide to find others, experiencing similar and looking for similar, to share and support each other through the many challenges Usher Syndrome puts upon us.

I find Twitter the best social media to do most things including raise awareness of Usher Syndrome via my Charity.

Another thing I like about Twitter is there is choice of apps to access it which is preferable particularly as the accessibility features vary from app to app.

I've tried twitter, echofon and  twitterific on my iPhone.  

Of these all three are free from the App Store.

My favourite of these and the most accessible for me is twitterific.

Once your twitter account is set up enable it on Twitterrific.

The initial set up was very fiddly but worth the fiddle. 

I found the settings, eventually!

Press on your Twitter picture at the very top of the screen and at the very bottom of the screen just right of the middle is the settings button, where you can set a few things, however, I think, strangely the most important setting for me was not in settings but another button again at the bottom of the screen left of centre, press it and a drop down menu at the top of the page appears and here you can change the contrast, size and type of text, also change picture size, lineage and even change the contrasts to be light during the day and dark at night - brilliant accessibility in my opinion.

I like that the pictures are not affected with the inverted colours.

Viewing tweets is home and reading everything on your timeline is easy on the eye, great for me as I don't get the glare. 

Home is indicated by a tiny house with a little dot underneath it at the top of the screen, next to it @ which has a little dot under it if you have been mentioned in a tweet and next to it a small envelope for your private messages, if you have any messages a little dot is underneath the envelope.  

At the right of the screen is circle and quill press here to write a tweet, remember only 140 characters maximum per tweet.

At the bottom of screen are tiny camera, search, draft and location which you can use when tweeting.

Once your tweet is typed look to top right and press send and then go to far left to close and return to your timeline.

I like the contrasts on the home section (timeline) and also the mentions section but do find the message contrasts quite difficult.

You can also press search to find people to follow, usually people of interest.

These are the main things I use particularly for my charity Twitter account (mollywatttrust).

If once your account is set up there is something you don't like you can edit by again pressing your Twitter picture. You will again see the list I mentioned above, this time towards the middle but at the top of the page is another little button press here to see your profile details including how many tweets you've sent and received and at the bottom of the page in the middle press to edit your details, when edit completed go to top top right to close and press home to see who has been tweeting, if you see something you are interested in commenting on replying to, retweeting or favouriting, click on the piece you will then see an arrow left, that's to reply, a little box in the middle which is to retweet (share with your followers) star right of that to favourite the tweet, quite basic.  On the far right is a small line of dots press this to see a discussion attached to any tweet and possibly comment thereafter or you can quote a tweet and add a comment above it - may sound complicated but really isn't once you've played around with it.

I do wish the settings were always at the top of the page, it's always the first thing we need to do and naturally where the eye goes to first - all this searching to set up is hard work for those of us with such limited vision.

Anyway once set up and after practice tweeting is a fantastic way of reaching out to others, reading and sharing information.

Tweeting is much easier to navigate on any of the three apps I have mentioned once you get the hang of it.

For me the layout of a page is so important, I prefer the lists in sections on twitter apps rather than the busy ever changing layout of Facebook.

The actual Twitter app is ok, fairly easy to set up if you are ok with the glare as if there is a way of inverting colours on the app I haven't found it.

The settings are just below your header picture, right of your profile picture so pretty obvious, better than Twitterific, press here to find the various settings, most important to me the place to alter text size, for me it should enable much larger to be really useful. Once settings set click done top right of screen to return to home screen.

Top right is box and quill to write tweet once tweet complete just above keyboard on right is blue box with tweet inside press to post.

Again there is search and camera on the left above the keyboard to use accordingly.

Interestingly, again the control features, home, notifications and messages along with "me" are at the bottom of the screen - press which ever you'd like to view.

I found echofon quite similar to Twitter but the text too small even on the largest available.

In short, Twitter easier to set up and use than twitterific but twitterific better and more aesthetically pleasing.

There are several other tweeting apps available and some available on iPad or MacBook but not iPhone - as each is a little different, varies in set up and layout I do tend to stick to the one once I have it up and running.

Having a choice is fantastic when you have quite specific accessibility needs, especially as each developer seems to have different ideas on accessibility.

I'm simply grateful when consideration is made for the blind or deafblind, in my case who still chose to read appropriately modified text.

Accessibility really is everything. 

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