Another major hurdle, I've reached 21 years old and I still have "5 degrees" of vision still remaining. I know it doesn't sound great and possibly terrifying to many but I am able to cope, with a little support and understanding.
What it also means is I need things to be right, things to be modified and not simply enlarged or read to me. I don't use Braille or Voiceover, I can read and while I have this last bit of "normality" it is the way I want to access information!
It might sound strange to most but even though I am very blind I am still very much a visual learner! Being born deaf that is the way I learnt so now I'm blind and still have the tiniest amount of vision that is how I take in information so this is how it is for me. It may well change in the future but right now I am not ready or wanting to make the transition to accessing most information audibly and with the amazing technology available and improving all the time I will continue being a "Deafblind Visual Learner".
If you can imagine looking through a straw, in good light, good meaning not too bright and not too dark then you'll have an idea of what I'm working with.
So I can read text but it must be the right size and the right colours and contrasts - for me personally I need between font 18-24 and I like a dark background with lighter text.
I don't like glare, glare is as blinding as sunshine and darkness.
The fact that technology exists to meet my needs and quite simply I'm told, its hard to understand why so many large companies fail to consider that we all have a need and a right to access information.
It is not ok to assume that all deaf hear nothing and all blind see nothing. The definition of deafblind "To have a severe impairment of both hearing and vision" Oxford Dictionary.
Wearing hearing aids and "5 degrees" is my normality. There is no cure for my blindness at the moment but I do feel very fortunate to have the very best hearing aid technology which helps me cope with my blindness. I have now been using two Linx2 "smart aids" by GN Resound for over four months they allow me lots of things but something totally new "spatial awareness" for the first time in my life I can identify where sound is coming from rather than just amplified sounds. No big deal you might say but this ability makes a huge difference to me for lots of reasons but particularly from a safety perspective, they actually compensate in a way for my blindness.
Where I was once able to see perfectly and hear sound but not be able to localise I could look all around me quite simply to find the sound, now having only 5 degrees of vision and thats in good lighting conditions I can now with Linx2 literally track a sound by listening carefully, I can also adjust these hearing aids to block out certain sounds so that I'm able to listen more closely in certain conditions for instance I can block out whistling wind to hear more clearly when outside.
I'm going to tell you a little about what I can do with my "5 degrees" rather than what I can't with what has gone.
Looking through "my straw" first lets assume it's daytime and good light - if somebody is stood in front of me I can possibly see either an eye and side of nose or a mouth which is useful for lipreading. If somebody is a little further away I can see a little more of them but cannot make out facial features, if at this distance I could interpret BSL and I will if it means helping but it is a very tiring exercise with my "5 degrees."
People often ask me how I draw as it is one of my favourite pastimes and the explanation is this, even though I only see a small part of a person or a picture, I piece together what I once saw in my mind to have the full picture in my head. I've heard others say the same.
My memory serves me very well, it has to!
Now if you can imagine reading, I'd need to access whatever it is in the right colours and text size as stated above, sounds easy enough and yet it isn't even though today's amazing technology allows it.
I don't like change, it's very hard to adapt with my "5 degrees" and funnily enough even though I'm blind I notice any small change, it's not my eyes but my memory which I guess is part of my coping strategy.
I notice when websites change as I cannot find a thing, navigating with "5 degrees" is a mission and often the most tiring thing ever.
I recently noticed changes on Twitter which was the text, it had become thinner and harder to read so I've had to change to a different Twitter App where I can choose the text and the colours Twitterific is much better for now.
One App that continuously changes and I'm not sure why but never for the better is Facebook - it has one of the most "busy" pages, a complete nightmare to navigate with "5 degrees" and it continuously moves things, rearranges everything and doesn't allow dynamic text. Sadly it is causing unbelievable isolation to so many.
I feel fortunate to be in a position to understand and make use of some amazing technology I just find it frustrating that there is a lack of awareness as to how to provide accessibility to all.
My "5 degrees" along with technology allows me to do so many things, things can only get better.
of course we all want a cure for Usher Syndrome and while the scientists are hard at work life has to go on and I choose to make the most of what I have.
Onwards and upwards