Month: May 2016

I have a secret. I won’t tell it to you, because I have a right to tell people when and if I want to. But then, what if I don’t have a choice? What if it’s really sunny and I don’t know where I am? What if I can’t read the task we are meant to do? Then I have to tell you. Even though my eyesight is my business, sometimes I have to make it known to others. There are occasions, where I have not had the energy to tell people and I look completely disengaged with tasks instead!

To me, disclosing my disability used to mean making myself vulnerable. I am telling people that I am different, and that can be hard – it takes a lot of energy! When I tell someone about my visual impairment, that is letting myself be real in front of them. I don’t know how they will use the information. I just have to trust that they don’t abuse it. For me telling someone, still involves a big discussion in my head – weighing up the reasons for (or not for) telling someone. It often comes down to how much I feel I need help and how stubborn I am being! I remember telling a course trainer once, and she then starting treating me like a 5 year old – it was so embarrassing!

Sometimes there isn’t any opportunity to tell someone I can’t see, because I don’t want to use a symbol cane (like the mobility trainers wanted me to!). People often swear at me from their cars, when I cross the road (because I sometimes cross at bad times… not just randomly!), or get annoyed at me for bumping into them on the pavement. I feel so awful after stuff like this happens, but sometimes I get angry too. Like when; there is a cycle lane on the road, but bicycles are zooming on the pavement, when I am meant to interpret the results from a coloured chart, or when people start showing me things on a tiny laptop.

Over the years, I have become more open about my visual impairment, as I have become more confident in myself. It has helped me to feel more like myself, and less like I am pretending to be something or someone that I’m not. I think it comes down to me being happy with who I am, and not feeling guilty or apologetic about it. This is a long process! I hope I get to the point where telling people I am visually impaired, is not a big deal for me. It helps me to remember that, everyone has something they need some support with (whether that be a shoulder to cry on or a hand with the stairs!), but needing support doesn’t mean you can’t help others.

Oh – it seems like it’s not a secret after all.

People always ask me, so what can you actually see? There is a scientific explanation of course (which is here: http://www.aapos.org/terms/conditions/10 ), then there is my simple explanation (I have said this so many times I’ve got it down to a fine art!). It goes like this: You know you have cones and rods in your eyes? Well my cones – I don’t have enough of them and the ones I do have, don’t work properly. Cones help people see things in focus and in daylight. So this condition affects my day vision, (so seeing things outside in bright light is really tough – my eyes are often half closed – a good look!) seeing things in colour (it’s hard to tell what colours are and differentiate between them, but before you ask, I can still have a favourite colour – blue) and seeing things in focus.  I also have a shaky eye and generally just need to look closer at stuff, to see things people with full vision normally can.

So that is me – my condition. I have had it from birth. It is all I have ever known. I have no objective way of knowing what fully sighted people see and I do wonder, probably just as much as people wonder about my sight! I know I can see more than someone with no sight and less than someone with full sight. This means I am in some kind of huge in-between. So how much can I actually see? Honestly, I don’t really know. When you live your life only seeing from one pair of eyes it’s hard. How do I know that I am not fooling you all? I sometimes wish I could just see with a pair of fully sighted eyes – just to see how different I am. I want to know how much I actually compensate for my lack of sight. I know I use my memory a lot (when you do a route every day, surprisingly enough, you don’t really need to see where you are). There is also good old social conditioning; from birth I have been told the sky is blue. So when someone asks me the colour of the sky, why wouldn’t I say blue?! Just like the grass is green and blood is red. It’s not only sight that can help a person see. If I close my eyes, I can still hear footsteps, I can remember where my room is and I can still feel the heat coming from a candle.  I know I use these things to help me make up for my lack of sight – but I still want to know HOW MUCH!

So now you all know what my disability actually is. You know I feel like I am in this massive group of people, with some functional sight. But you don’t know this often means that I feel like I can’t fit into a group. Maybe I was never meant to fit in, but maybe sometimes that’s all I want.

Next post will be no later than two weeks away. I have already started writing it!