A A A Accessibility A A A A

I was asked by Berkshire Vision (previously Berkshire County Blind Society) to do a small presentation to a local school on Wednesday 23 September.

The children had been asked to design a remote control accessible to all.

It was my pleasure to talk to this group of children about accessibility for those not just with deafblind, but those with other disabilities.

Children are so receptive to this sort of challenge and I was impressed with the many ideas they came up with.

It dawned on me that these children are our future and that they can and will make a difference to people like myself with their fresh and intuitive ideas.

I have visited schools around the country and discussed Usher Syndrome, anti bullying and the importance of inclusion, understanding and acceptance of those of us who are ‘different’ for whatever reason.

I suffered at the hands of bullies and also as a result of a great deal of ignorance and I don’t want others to suffer in the same way.

I rely on technology to access most things and it is so refreshing and exciting to see what children are capable of now and to imagine what will come as they become adults.

keep up the great work kids and please keep me up to date with your designs and remember if you design something and consider accessibility features from the very beginning you will make your product inclusive to so many more people, including me!

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!

I should make people aware of the type of blindness associated with Usher Syndrome is called Retinitus Pigmentosa (RP). The characteristics of RP usually start with night blindness, followed by a progressive loss of peripheral vision, so tunnel vision and what we see varies in different light conditions too and not just light to dark but from room to room, outside to inside in brightness and glare, environmental changes that just happen, yes, it is a nightmare! Of course I'm no expert on these things so the following is me talking about myself and just an outline for those reading my blog. Again everybody with the condition is different, I was very unlucky to have been registered blind or I should say registered Deafblind at just 14 years old and being already deaf it was the most distressing time of my life - that's possibly a blog for another time. Anyway, the loss of sight has to be one of the worst nightmares for somebody already deaf. Not only did I lose my sight within two years along with it went all the visual clues I relied on to hear, lipreading, facial gesture, body language - it felt like I was more deaf. The irony that I was often told "Molly you've got eyes in the back of your head" so observant was I! The level of concentration required to carry out everyday things is exhausting having Usher Syndrome and I can have days and days of migraine and sore eyes, but it's just become part of life. Back to what I wanted to blog about: Molly with Usher Syndrome / Deafblind I had to learn to use a cane, I hated it and by 16 years old I became a Guidedog owner. To get the independence I desperately wanted I had to learn to trust others, rely on others including my Guidedog Unis and technology, it did not come easy! That was then, now at 20 years old I have accepted that I need help but I like it to be as discreet as it can be and I feel lucky that there is good technology out there, often accessing it is the difficult part! I guess lots of you will remember my blog "My Apple Watch after 5 Days". For me it was a lot about, awareness, accessibility and independence. I therefore decided to leave the watch at home after 10 days and to carry out what would be a quiet day for me on a regular route that I would have no problems with Guidedog Unis. I found myself constantly looking at my wrist and strangely felt vulnerable as I immediately went back to holding my iPhone in my hand for fear of missing messages which I had gotten used to feeling on my wrist. The more I looked at my wrist the more anxious I became! Very strange. By the end of the day I had a terrible migraine and very sore eyes. It was then that I realised I had not had a full on migraine since I had been wearing my watch. Having thought about it a lot and of course going back to using my Apple Watch I believe the "no major migraine" had been since using the watch! Maybe it's coincidence, only time will tell. Funny I had thought the small screen of the Apple Watch, even though I chose the bigger of the two available, would have been a major issue for me, however because what I see is the equivalent of looking through a straw the screen is actually better for me than even that of my iPhone. I do not have to scan so much for information, glancing is actually easier on my eyes particularly as I have adjusted down the brightness, made the text bigger and use zoom. Surprisingly 10 days was all it took for me to become pretty reliant and attached to my Apple Watch. I'm very excited to have the opportunity to try ReSound Linx2 hearing aids from next week as they are said to be the first "Smart Hearing Aids" fully compatible for iPhone, iPad and Apple Watch. For those interested, I will blog about how I find the new hearing aids but it probably won't be for a few weeks as new hearing aids take some getting used to. Watch this space.

Sunday, 09 November 2014 00:00

Learning From Each Other

 
Usher Syndrome is a rare genetic disorder caused by a mutation in any one of 10 or more genes resulting in a combination of hearing loss and visual impairment, and is a leading cause of deafblindness.
Usher Syndrome is incurable at present. 
 
That is what you get when you google Usher. For me it's totally different.  
 
I have RP (retinitus pigmentosa) which is the cause of the sight loss in Usher. I struggled with my sight loss for many years. Feeling angry, bitter, sad and annoyed.
 
Through social media I made contact with some awe inspiring people who helped me accept that RP may be rubbish but it is a part of me and to be honest I like 'me'. Without RP I would be someone else, I wouldn't have made the great friends I have (and ditched some bad ones).
 
I had heard of Usher Syndrome at the hospital when my condition was being discussed, it happens when you are under a certain age, medical stuff is often talked about in front of you but because of your age you are not part of the conversation. 
 
I struggled through my teens and twenties trying to find my place in the world stuck between the seeing and the blind world. Feeling very alienated from both. 
  
Part of my journey led me to social media where I met some amazing people, some with Usher Syndrome too, who I am now very proud to call friends. Proper friends too. I have met them in person and everything.  
 
Through these simply brilliant friends I have learnt so very much. Simple things like where to stand when I am talking to people in a presentation, or which room to choose so that the acoustics are right for hearing aids, to think about how I speak making sure I am clear and I am facing the person and the little things like repeating what someone said to my friends without making a big thing about it really make a massive difference.  
 
Jane and Claire were part of the reason why I applied for my guide dog. Rachel is the reason why I strive at work to be the best I can be. And Molly is the reason why I volunteer to speak for guide dogs and raise awareness. 
 

I will at every opportunity try to raise awareness of RP, Usher Syndrome and Guidedogs.

 
As a very wise woman said awareness is key! 

 

Monday, 03 November 2014 00:00

Glendalough Trail - 1 November 2014

Well, here I am with some amazing friends and family( I'm the short one with red hair!!) getting ready to take part in my very first charity event here in Ireland to raise funds for the Fighting Blindness.ie.

It was an amazing but extremely tough challenge in the Glendalough Valley in the mountains in Co. Wicklow, especially as it was my first time partaking in such an event. Admittedly, I'm so delighted with myself for completing it and not even the sore legs can take the smile off my face. It was also a very important event for me personally, as while fundraising I decided it was time to reveal to everyone that I am losing my eyesight and that it is due to Usher Syndrome type 2. Only some of my close friends and close family knew beforehand, and even though they had given me enormous support and still continue to do so, it was time to make others aware. I wasn't diagnosed with Retintis Pigmentosa until March 2013, a few weeks before my 34th birthday. It was with complete and utter shock to learn of this diagnosis and I don't think i could ever forget that day, how could anyone really? After diagnosing me with RP, it suggested that it could be due to Usher Syndrome and I was urged to find out more about this condition. I left the ophthalmologist's office having heard his words but not comprehending what he actually meant. It was only when I got home and like everyone does, I 'Googled' it all. That's when it hit me, I'm going blind. When he spoke of my eyesight getting worse and worse but hopefully I might have good central vision for another 10/15 years, that's what he meant, I'm going blind. He talked of the possibility of gene therapy which looks promising but probably not for another 15/20 years, he meant I'm going blind and there's no cure at all. It was really difficult to believe that I was having to deal with going blind when I was already deaf. Kept thinking was this 'supposed god' having a laugh? Reading up on Usher Syndrome, I knew straightaway that it was what I had and more than likely it was type 2. It really was like reading about myself. Genetic testing later showed that I do indeed have Usher syndrome type 2 (USH2a). It was awful though, having to tell my parents that the hearing loss was in fact genetic (previously thought it was due to an infection) and that I am also going blind now. I know they did blame themselves for awhile but I'm hoping that with me being open and honest with others about it, it will show them I will be just fine. I came across Molly Watt during my first Google search on Usher Syndrome and kept thinking wow, fair play to her for all that she was achieving and not letting it hold her back. I really admired this girl and I still do!! I also came across Mark Dunning and the Usher Coalition, Megan Kennedy and many others, and the positivity and faith they had but yet being totally honest with how hard it can be was admirable. They all gave me the strength to believe that I can still achieve things in life despite it getting harder to do so. After a year and half of coming to terms with the diagnosis, I realised I didn't want to hide it anymore. I did hide my hearing impairment and I had left it to others to guess that I was so. But hiding going blind... no, that would be so draining and completely unnecessary. So I put up on Facebook the link to my fundraising page where I explained briefly what I had and how it was affecting me. It really worked out well as I had a lots of people talking about it and it really raised the profile of Usher Syndrome in my area which I'm delighted with.. Also by raising awareness of the condition I was hoping to get support and understanding in return, and that is happening. The amount of support I got was overwhelming! There is still some way to go though with raising awareness and making others understand how tough it is. But sure it's only the start of my journey with Usher and I intend to make it a posiitve one even if it does get a bit bumpy along the way.

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