A A A Accessibility A A A A
Friday, 20 March 2020 17:46

Welcome to the world of Isolation

Alex Elle: “I’m thankful for my struggle because without it I wouldn’t have stumbled across my strength.”

I have addressed the isolation I experience because of Usher Syndrome on many occasions, how isolation can impact on my mental health and every day life.

Helen Keller described DeafBlindness “Blindness seperates people from things; deafness seperates people from people.”  I would imagine many now being asked to work from home, self isolate or social distancing because of Covid19 are feeling a level of isolation they have not experienced before and finding it difficult and it absolutely is. 

My condition is progressive and whilst described as DeafBlindness the add-ons are often as challenging. 

The isolation I sometimes feel makes me feel depressed and anxious, often claustrophobic, fortunately it doesn’t last but there are often no tell tale signs, no rhyme nor reason as to why and when it triggers itself!

I have experienced this since my early teens which coincides with my Usher Syndrome diagnosis!  Thankfully I have learnt to manage it, however it isn’t always easy.  I have accepted these feelings are all part of the person I am and I have accepted that it really is ok to not be okay.

I have been observing my own Dad who as those who know him will confirm a healthy, happy and chatty person.  His work takes him out and about in his car, he visits his clients in their homes, coffee shops, hotels and occasionally his office.  He attends conferences, seminars and meetings all over the UK.  He cycles daily, he plays squash, loves his sport and above all he loves people, he’s old school! 

I have helped him advise all clients he will, until further notice be available by telephone, skype, FaceTime, email or text for obvious reasons and thank goodness he is still able to get on but he is struggling not having the usual interaction with people.  For him this has certainly been a time to reflect on how fortunate he is that usually nothing holds him back and also to have more of an understanding as to how difficult and challenging life can be for those who are regularly isolated through no fault of their own! 

This whole coronavirus outbreak has made me feel very anxious, also very sad that lots of my work travelling has had to be postponed or cancelled, that I am unable to meet with my clients or colleagues, however it has also made me feel incredibly fortunate that I can and often do work remotely thanks to access to the accessible tools I have access to, the internet, accessible apps and websites.   It has also made me very aware of just how much needs to be done to make online fully accessible.  It also demonstrates how those organisations who have and regularly address accessibility are now in the best position as more and more people have to go into isolation and rely on online services!

It shouldn’t be that a pandemic influences organisations to do the right thing in making online and online services more accessible but that accessibility and inclusion be priority all the time. 

I feel the anxiety of the nation but it has been quite an eye opener (excuse the pun) not only my own father but so many others who ordinarily have no accessibility restrictions no longer able to go about their daily business and are struggling.  I’m hopeful these difficult times will be a time for us all to reflect and think outside the box, that it brings out the better in people, a new understanding and empathy for others who don’t have a choice, isolated by various disabilities or conditions.

I have spoken to my Grandad on the phone, thankful my ReSound LiNXQuattro allow this, wouldn’t be a blog without mentioning him!  He is 80 years old and in that vulnerable group, he lives 200 miles from me.  Grandad was something of a technophobe, however, I have dragged him into the world of technology and told him to keep his iPad and iPhone fully charged and to make FaceTime calls to us all because we want to see him, not just to check he is well but to make sure he doesn’t feel isolated. 

My grandad always checks in on me, now the tables have turned, we all have to try to do the same at this difficult time.

Technology is keeping me connected to work, to my clients and colleagues and big thanks to my family who are keeping me as positive as I can be, I am well.

Jerry Springer always said “Take care of yourself and each other.” 



Monday, 27 July 2015 06:25

No Sight, No Sound, No Social Media!

Being born with a condition is very different to acquiring one, I have the experience of both!

I was born deaf, hearing aids from 18 months old, audiology appointments, speech therapy and a specialist teacher of the deaf for support.  It was all I knew until I was 12 years old and it all worked very well. 

It all changed when I was diagnosed with Usher Syndrome.

I was told I'd go blind but that it would be a gradual process, for me I went from perfect sight to registered blind in two years, I have been one of the unlucky ones.

I was born with perfect sight and being deaf meant I used my eyes to compensate for my deafness.

I relied on my eyes to lipread, to learn to speak, I could see facial and body gestures which helped me understand mood, happy, sad, angry. 

Often when in loud or difficult situations where I couldn't hear with my hearing aids if I could see a face or faces I could lipread and get by. 

I could literally hear with my eyes.

The "deaf language" BSL (British Sign Language) for some is all about being able to see.  The deaf use their eyes the way nobody else has to.

To experience deafness from day one and then lose sight is very different to being born with sight loss.

I have had to learn to live with a second sensory loss, it doesn't just happen like it did with deafness.

The impact of blindness on an already deaf person is profound, particularly when it happens so quickly.

People seem to think all blind people use Braille, some do but for me and lots I know who have the smallest window of vision we still read text. 

For me it's like holding onto the smallest amount of "normality" however, it's no longer like picking up a book, a paper, a magazine, looking at a computer screen, no, that "normality" went with my sight.

Everything now has to be modified and that doesn't mean made bigger like so many assume necessary for the blind!

I see only with one eye and when reading I see the equivalent in size as a 5 pence piece, pretty tiny so things need to be right.

Making text accessible for me really isn't that difficult.  Firstly white paper / background is the absolute worse, the glare is painful. 

Why so many websites are white background and narrow small text is very irritating.  Buff or cream is so much easier and text size 18 or 24, in blue and arial is ideal or why not have accessibility features for those of us who need it to adjust to what suits, is that so difficult?

My preference for reading is on a Kindle, the basic one as there is no glare and it allows me to adjust text size and lineage.

I could read 3/4 pages on an iPad before suffering from the screens glare, with the Kindle I could read several chapters at a time.  It was only because of the Kindle that I managed to complete my English A Level.

I like the control of accessibility my MacBook gives me, particularly for the things I need to do online, however I have to restrict my use because my eyes are very delicate.

I am not ready to make the transition to voiceover and bear in mind I'm deaf so voiceover needs to be accessible to me.  I am fortunate that with my new hearing aids I am able to access sound with Bluetooth however, unfamiliar voices, accents, speed of speech, dialects, male, female can all be challenging so not quite as straight forward as some might think.       

there isn't a book to teach or explain individual access needs, one size or specification doesn't necessarily meet all need but I find myself adapting things myself, which is fine if they can be adapted!

Am obvious coping strategy is a good memory, those that know me well know not to move things without telling me or it means me falling over, knocking over or losing something which can be upsetting and / or frustrating and I don't just mean things in the house, work place but everywhere, anything that moves without my knowledge becomes an issue!

It is probably a good place to now discuss Facebook.

Facebook has a habit of moving things around far too often and they cause untold frustration and often real isolation to the blind community.

Already Facebook is a cluttered page which makes navigation difficult to start with.

Facebook presents itself very differently on my various gadgets.

I will start with the worse for accessibility. 

On my iPhone:

The app only allows white background with black text, the glare is unbearable and even worse it is impossible to enlarge the text - this makes the app inaccessible to me.

The icons at the bottom of the page, News Feed, Requests etc are tiny and in the faintest text.

The icons get moved around for no apparent reason making navigation unnecessarily difficult for those with visual impairment or blind.

On actual posts the text, reply or like is tiny and faint.  If like is tapped the writing apparently changes colour I cannot see this!

Strangely the Messenger app does enlarge text if the iPhone setting is set to large.

I have had to get help to write about Facebook for iPhone as I'm unable to use it because of the reasons stated above.

Facebook on MacBook:

Again all white background and black text, terrible.

The three vertical columns are very hard for me to navigate with such restricted vision, as I result I have to scan and can get lost quite easily.

Column 1:

Name in bold, if I was not using my Mac which allows me to enlarge I would struggle to read.  Underneath the name is small subheadings with small pictures in front of them - either events, groups or pages, next to these small numbers, I struggle to see all of these things again relying on my Mac to zoom in.

Column 2:

This is where most friend context lands, as previously mentioned again the awful white glaring boxes with the "like" option very faint text and a nightmare to see through the glare.  Again the colour changes from grey to light blue, the contrast is very poor.

The font size is very small on all columns so I have to rely on my Mac's ability to zoom in which I do manually though this can cause the screen to break up making it difficult to stay I in the correct column.

Column 3:

Again same colour scheme, white, pale grey, dark blue and a light blue.  The bulk of the smallest text is in pale grey underneath comments, again terrible contrast and impossible for me to access.

A little further down the page is "Your Pages" again most text in the awful pale grey colour, I don't even try to read these, simply not accessible.

"Trending" also in the awful pale grey text.  A lot of the posts in this column if the sub titles are lingered over little boxes of black text appear, I can actually read this and then another box this time grey with pale grey writing, completely inaccessible.

Furthest along the page are friends profile pictures which are small with tiny dots to indicate if they are online.  I have noticed if I linger with the mouse another column pops up with people's names.

I find it hard to speak to somebody via the Facebook webpage because the text is too light, easier with the Messenger app!

Requests, Messages and Notifications are small icons in the top corner of the page again there is very little contrast for me to recognise one icon to another.

Beside the Notifications is the smallest icon and a tiny arrow. This is very important as it's the privacy settings, I had to have help setting these so perhaps not as private as I'd like! Major fail for those of us with poor sight.

I find navigating my own profile considerably easier as there is only two columns, much less cluttered which is good but still small grey text.

Changing cover photo remains something I need help with, the camera icon far too small to see.

On iPad

This changed on Friday and after over an hour trying to navigate the new layout I had very painful eyes and gave up.

Facebook is widely used to bring people together, often very lonely and otherwise isolated people who find huge comfort in reaching out to others similar to themselves.

It is a fact that people in smaller communities like mine often have never met or spoken to others with the same condition which is in itself isolating. 

Facebook is great for relieving these issues but sadly they are failing some of the most vulnerable with their poor accessibility.

Good accessibility would work for everybody, a choice of colours, contrasts and text sizes is that so difficult?

Friday, 10 July 2015 06:15

Let Me Be a Part

In a lot of my talks I often mention how grateful I am to have great family and friends. I could not imagine myself as a person without either, I really cannot.

As I grew up I was very close to my parents and am lucky to have been well socialised.

I have some amazing and happy memories, from days out to holidays.

I always also looked forward to being with my friends at school.

I have mentioned before I knew I was different pretty early on.

Lots of my friends were walking to/ travelling to school independently, I was walked or was put in a taxi to get to school.

I always had to leave the house with my friends to be assured of my safety or I would get my parents to drop me off exactly where I needed to be.

Not being able to hear cars from very young, and then with my eyes failing so quickly I wasn’t able to be as independent as my friends.

I didn't resent this until my sister grew up and realised just how dependent I was and had been through my younger years and right the way through my teens.

Now with Unis I have independence, I know it isn't the same as most but it's as good as it gets for me.

I work part time, spearhead my charity advocating for others and I'm currently building up my own business as a Motivational Speaker - I work very hard and it's exhausting but I am very determined.

I am a very sociable person - believe it or not being sociable is really hard work for me but I'm no different to lots of 20 year olds in this respect, I want to be a part of what is going on.  Be it with family or friends I love eating out, sitting in a pub chatting, clubbing, or partying - I like a good laugh but doing these things can be quite a challenge but on the whole those close to me know how to make life easier without making me feel a burden, thankfully as that has to be the worse feeling ever.

Last week, for the first time in a long, long time I got forgotten, I cannot tell you how upset I felt and nobody was really to blame - it was a real "Usher Syndrome" moment "isolation" I was very hurt and a painful reminder of what this hidden condition can do to those of us burdened with it.

An arrangement was made for drinks two train stops away with a group of colleagues and friends, the arrangement had been made with an online chat application which isn't great for me if its a long conversation with lots of people taking part it is virtually impossible for me to keep up as I have the font so large it would take me forever to keep a track of the conversation - I missed all the details and along with it the night out.

I was very hurt and to add to the hurt were the pictures posted online of everybody having fun whilst I was sat at home.

I know this situation wasn't manufactured on purpose but it happened all the same and I would like those around me to consider how they would feel if it happened to them.

I only ask that there could perhaps be a conversation on a one to one with me so that I know what it happening and I can then plan so that I can be included.

I have socialised as part of this group a few times and I don't think it was too big a deal for anybody else but it made a huge difference to me - I was dropped at the station where I was met by a friend and we travelled together, previously I was collected from home and we travelled by car, of course I'm always happy to offer travel expenses - I just want to be a part of things.

Guidedog owners are not permitted to work their dogs under the influence of alcohol so I am unable to be completely independent if going clubbing or partying which is absolutely understandable.

I work tirelessly to make people aware of the many daily challenges people like myself endure and I guess I'm fortunate these instances don't happen very often but when they do it is a constant reminder of the isolation Usher Syndrome can cause.

I never want to feel or be a burden to anybody but the reality is I do need assistance sometimes, we all do from time to time.

So for those who think mobility isn't an issue to those with Usher Syndrome think again, not only is it an issue it can cause real isolation...

Tuesday, 30 June 2015 20:31

Just Imagine

Having Usher Syndrome means deafness with a progressive blindness and for some complete blindness.

None of us can possibly know if we will be unlucky enough to lose all sight, however it is a consideration.

I lost so much sight so quickly the thought of any further progression has been scary and something I choose not to think about it unless I have to.

At the beginning of the year I found myself in that position, through no fault of my own, where was I going with my life.

The profession I'd originally dreamt of was gone and now at 20 years old I needed to reconsider what I could do being deaf and already very blind.

Most would assume "Deafblind" what can she do?  Well, you'd be surprised at the things I can do!

I doubted myself a lot after diagnosis, always questioning the whys and how's.

The one thing that never changed was my parents determination to nurture and fight for me every step of the way even though they had to learn as we went.

We all need a chance to achieve what we can but how does that work when you are not given the tools to access what everybody else does?

I suffered a huge amount of discrimination through ignorance and it caused me so much distress and naturally I was "being silly or over dramatic", after all I was only going blind through my teens - "no big deal" accept it was a huge deal and terrifying - just imagine.

However, since I was 15 I have spoken publicly, initially to educate those around me of my support needs and over the past 5 years spoken in some amazing places about all sorts of things.

Life with Usher Syndrome is ever evolving, constant changes but luckily for me so too is technology.

There is always something to learn for me as much as everybody else, I just see things differently to others and how to adapt them because I have to and because I can and do.

I try to share positive and negative experiences and I'm delighted to see there is interest in my blogs and in Usher Syndrome and it's challenges from all around the world.

Also he world of technology who in many cases can hold the key to not just those with my condition accessing the world but for lots with disabilities and also the ageing population who can become isolated.

I know what it's like to feel different, to be bullied, to feel isolated, to have anxiety and depression, I know about denial, acceptance and counselling, I've experienced them all just because I have a condition that few understand, but, I understand and I use my bad experiences to advocate for others.

My path is definitely different, it's been made different through lack of accessibility, something else I'm passionate about.

I cannot highlight enough the difference technology makes to my life.

I'd just like those who need it most to be able to access it, it makes complete sense in every sense of the word.

Imagine being able to read, to write, to walk around safely, to join in, be an active part of society and then slowly these things are taken away as sight loss progresses but that you know of technology to enable you to continue with these things but you simply can't afford it - imagine that!