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Friday, 01 January 2021 16:27

2020 and Me!

I remember thinking 2020 is going to be my year, finally I’m getting somewhere, I’m going places, I had work plans, a diary full of work and travel all round Europe and Scandinavia - many events booked a year in advance, why?  Because clients wanted me!  Yes, I was approached directly.  I cannot express how good that feels.  My hard work, my desire and persistence to make a difference had really begun to pay off my work, my commitment and passion for accessibility, inclusion and positive change noticed for what it is.  The importance of diversity.  Could things really be taking off for me?

I have been self employed for 4 years and my hard work had begun to pay off, things were popping up here and there and with other bits of contracted work, life was heading in the right direction - finally able to save for the first time in years, to move out and be independent. 

The first 2 work trips of the year went according to plan, first to Stockholm and the next to Paris, both went really well and then BANG, COVID-19 struck big time.

Of course I had heard about it but I certainly hadn’t considered the severe impact it would have on everything and everybody.

Lockdown struck leaving us all a little lost. Thankfully I had my work at Sigma IT to keep me going and how important that was, we could continue to work remotely, however then came furlough and along with it routine and structure flew out of the window. 

The nightmare continued:

“You can leave the house once for essential shopping or independent exercise” 

“Masks must be warn at all times”

“Keep 2m distance at all times”

Truth be told I didn’t leave the house, not for a long time. Essential shopping? The thought made me heart race, how could I being deafblind be able to exercise the 2 meter distance rule? Let alone find essential items in a busy shop full of anxious people wearing face coverings: obstructing my ability to ask for assistance!

After a fair few weeks I did build up the strength with the help of my family to go for walks with the dogs from time to time, but even that I did find it tough to keep up.  

Hibernation was something a tad too familiar to me, a bit too easy for me to fall into. I could feel myself falling, I recalled when I first came home from boarding school (for good) all those years ago, all I would do was hibernate - sleep became my best friend! 

My old friend anxiety and his best mate depression swept over me and I just felt defeated, deflated and tired. 

My family and friends allowed me time to reflect and to straighten myself out as best I could and as time went by I did come to terms with the situation. 

This time I was not alone in a world of isolation, the world that many deafblind like myself can live in, in fact more than ever before many had entered our world and they were also struggling.

Three of my closest friends made it their mission to FaceTime regularly, arranging quiz nights and chinwags with a glass (maybe two!!) or wine. This became my routine, became my social interaction and my medicine - seeing familiar faces made my heart warm.  We like so many found a way of following the strict rules of lockdown and socialising.

I became motivated to start the family quizzes as the almost daily calls to my grandad who lives on his own did not feel enough. He has an iPad - the exact iPad I tell everyone I helped set him up on, why not put to good use and keep him in the loop?

Wednesdays became family quiz nights with Grandad, my parents, my sister and I plus my auntie and two of my cousins.  We would join from 3 devices (this household, auntie’s household then grandad’s) to make it a little less confusing for grandad. 

Thursdays became immediate family quiz nights - My parents, sister, brother and girlfriend plus brother and wife (with beautiful nephew of course.) 

We had a routine, that’s when things got a little easier. 

Lockdown eased and we could do a little more, but with precautions. This of course made me very nervous. I struggled with it for a while and again, would avoid it whenever possible!  My friends made the effort to come and sit in my garden or go for walks and get coffee - all at a distance but knowing they could still offer assistance if absolutely needed be, again my nearest and dearest made me feel safe when I couldn’t be sure for myself.

I then braved the train for the first time in several months with Bella, she was keen as ever to dust down her harness and get me back out. We did a short run to Reading where one of my friends lives to see her new flat, she had offered to pick me up and drive me home but I insisted on doing at least one of the trips independently - and I am glad I did.  Bella doesn’t do social distancing but she does safe and Im good with that, we do have to rely on the public realising we can only do what is possible and they must consider we do our best in the most difficult of situations.

Somehow the Molly Watt Trust carried on as best it could with Mum rallying the troops, finding local ladies and gents to come together to make home made accessible face coverings (face masks with a large clear window) whilst we searched for an outlet to buy in bulk.  Those face coverings made life a little more doable for those of us who rely on lipreading, in fact the compulsary wearing of facemasks made so many people much more aware of how much they relied on lipreading and facial gesture even though not knowingly deaf or hard of hearing.

We also continued to work with our friends and supporters, with those at GN Hearing and audiologist Sarah Vokes at Correct Hearing to bring the gift of hearing to two more people living with Usher Syndrome - huge thanks to all involved in making this happen.  Hoping to continue this work into 2021.

Then came another lockdown then Tiers then more tiers... Honestly I am a little lost with it all at this stage. 

All I know is Christmas was strange. My sister gave birth to beautiful baby boy almost 3 months ago and his presence in this household has made life in lockdown/ tiers far more bearable. 

I first became an auntie the day before the first lockdown struck - this was really tough!!

Casper is now 9 months old and an absolutely gorgeous bundle of joy.  It was so hard not being able to meet Casper the first 3 and a half months of his life. 

Living with Noah who is almost 3 months has made me feel almost sadder that we missed those months with Casper, though we were inundated with pictures and video calls, not being able to meet him, to smell him, to cuddle him and listen to his coos in the first few months were precious times, lost. 

Speaking of listening in September of 2020 I began wearing Resound One smart hearing aids that for me was a high point, one of the few, it coincided with me getting to see so much more of Casper and the little man had found his voice.  I got to experience his cooing, gurgling sounds, his raspberry blowing, his giggles, his belly laughs along with his squealing and crying.  I got to play with him with all his noisy toys, boy can toys be noisy!  I didn’t get to appreciate noisy toys when I was little my hearing aids simply weren’t up to it!  I have to say I enjoyed every sound of his, he really is the cutest.

Casper loves a squeaky Hey Duggee toy and loves to watch The Chase, he seems to find the buzzer sound amusing.  So much joy to be had with the gift of hearing, thank you ReSound I’m enjoying the gift of sound more and more.

Back to Christmas: we were thrown into Tier 4 days beforehand meaning the original “three family bubble” wasn't going to happen. To say I was gutted was an understatement. 

Casper and Noah’s first Christmas was something we had all looked forward to - we’d bought matching outfits for the boys and so many presents for them.  Naturally we wanted it to be special but it was not to be!

Christmas was nice but next Christmas will be better!  

So there I was, writing this on 31st Dec 2020, thinking of the many challenges, the sadness, the anxieties, the isolation, the rejections, the fighting back and refusing to be beaten by the monster that is Covid and I've made it - I'm stronger than I thought!

I'd like to see my Grandad soon to see more of Casper and my family members.  

I've also really missed my work colleagues who I really need to thank them for keeping me busy online, always finding the way for us to carry on with our essential work in online design, accessibility, usability and enablement, which over the cause of this pandemic has become even more vital.

I'm hoping 2021 will be kinder to us all, that we can all be a little kinder to each other and that some sort of normality can prevail.

Tuesday, 17 November 2020 15:05

Covid Challenges and Solutions #DoingItAnyway

I was so excited about 2020, it was set to be another full year, lots of exciting projects, lots of learning, lots of educating, lots of travel, a new nephew and my own flat. 

Instead it’s been a year of cancelled travel, a bit of furlough, lots of remote working and learning, two nephews and here’s hoping that new flat happens too!

I still learnt a lot, observed a lot and looked to solve some covid related challenges for those around me.

Before Covid hit I had again been nominated for a couple of awards this year, I never win anything but it’s great to be recognised for the work I do in trying to make an overall difference to others.

On the whole I have worked remotely, which is much easier for me.  However I have missed seeing my work colleagues scattered all over the country and world.  I have missed having to be organised, timing trains, organising accomodation, walking in the rain with guidedog Bella , laden with backpack full of all sorts including dog food!  Feeling tired, weary.  The stress of airports and air travel, I've realised as much as it causes me anxiety I do it and I miss it, infact I have missed the daily challenges of being me!

Today’s blog is very much about my thoughts on how Covid 19 has impacted on us all. 

I wanted to talk about five things I live with every day since my Usher Syndrome diagnosis at 12 years old: 

Sound familiar?

I think people like myself had a head start on this resulting in us being in a position to support others.

I have, in a strange way drawn strength from this in the belief that now majorities are experiencing what is often my life they will, when the struggles of Covid die down, empathise more with those who live with challenges every day!

When I look back to March and the fear of that first lockdown I recall using skills I have developed because of Usher Syndrome to help others, be more accessible via technology. 

Of course I was not the only person doing this but being an early adopter of assistive technology and social media for learning and socialising it was great to see all generations wanting to embrace what is possible rather than what is not, an ethos my parents have drummed into me over the years.

I spent several days on and off talking my 81 year old Grandad through how to use FaceTime groups and Zoom, he found it all very confusing and stressful but he also showed determination to work it out so he was not so isolated.  Living on his own 200 miles away me and my parents were worried about his mental health.  I was so proud of grumpy old Grandad’s determination, just shows you’re never too old to learn new things! 

I recall the fear and anxiety of others scared to leave their houses, yes, I’ve been there too.  When I was just 14, I was registered blind and fearful of leaving the house.  As a deaf person I did not feel overly confident out on my own and as a result tended to have a small circle of friends and if out would invariably be with one of them.  However, going from being deaf to deafblind at such an early age I learnt an invaluable lesson, true friends are hard to find!

Matched with my first Guidedog Unis at 16 I was able to go out but my fear of the outside world not being able to see or hear particularly well only fuelled my isolation and as a result of Usher Syndrome, deaf blindness I fell into depression.  I imagine many have felt like this since ‘Social Distancing” became a thing.

My whole world and dreams fell apart.  The regular inference from professionals that I would make little of my life allowed me to feel stressed and anxious about the future and it took a long time for me to realise that yes my future may well be uncertain but I will be the judge as to how far I can go.

Challenge is all I know, I am very aware that in many things I do I must strategise, I must find my path and that dwelling on the negatives of the past is destructive and wasteful of my energy which only holds me back.

The many disappointments I experienced through senior school education and further education were painful and unnecessary, but they have taught me valuable lessons. 

Irrespective of what the so-called professionals have said I am very capable and here I am.

I cannot say I have escaped Covid without anxieties.  Social distancing remains impossible for me and my guidedog Bella. 

There have been terrible stories in the news about those who show little or no empathy for those of us who cannot see or hear properly.  It is totally understandable to not want strangers within 2 meters but surely with common sense the sighted could avoid this happening.  It’s a double edged sword for the deafblind, we also have to deal with the dreaded face masks, most of which deny us access to communication, why not use accessible face coverings, available here: https://shop.molly-watt-trust.org 

Perhaps take the challenge, walk around outside, near the public in the dark with your eyes closed and ears blocked, it’s fair to say you might well struggle with what is being asked and might consider moving aside next time you see somebody struggling, in the interest of us all being covid safe.

On the whole I have been ok throughout this scary time but I certainly now have some anxieties about when some sort of normality returns, but I know with Bella at my side I will overcome these things and hopefully more exciting projects will come my way, more travel, more learning, more educating perhaps not more nephews or nieces just yet but here’s hoping moving to my new flat actually happens!

2020 we are done with you, here's hoping 2021 is a big improvement for us all. 






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!