I am 24 years old and when I was 14 I was officially diagnosed with Stargardt’s Disease. My central vision is gone, my contrast and colour vision are damaged and in total have a vision of about 5%. Which is really just a number. I believe it depends a lot on what you do with it :)
I find that a picture makes it more personal, so, here I am haha.
When looking at me, people do not notice that I am visually impaired. Well, not at first. There is often this prejudice about visual impaired people. That they are old, mentally challenged or that they dress old-fashioned or dull. I have experienced these types of prejudice when asking for help and also while not asking for help. When I do ask for help, people often don’t understand the term ‘visually impaired’. I have experienced with other terms to explain why I need help and I find that it helps to keep it simple. When I am in a supermarket and I need to weigh some fruits. I stand there trying to read the price tags so up close that it looks like I am smelling the sticker. And yes, although I might not see very well. I am aware of people looking at me funny. That is what sometimes happens when I don’t ask for help (because I do not always need it or want it).
So, there are a few reasons that I prefer telling others in my environment that I am visually impaired. Not just the people that I ask for help in a store (because I probably don’t see them ever again). The people that I do tell about it are for example, my colleagues, my fellow classmates, my roommates, the people at the pole dance studio I train and teach and often people that I come in contact with when I am having a nice conversation.
I find it a very comforting idea that others know why I do what I do and why I am who I am, with respect to my impairment. If others know that I have a vision of 5% (and that glasses are not the answer), I feel more free and more like myself. If others know about my vision, I don’t feel that I have to worry about what others will think. I often don’t care what others think but if they aren’t aware of my situation I feel being watched and that is not a nice feeling.
I tell my classmates about my vision loss and that I need an electronic magnifier in class to read what’s on the paper. If they didn’t know about my vision and they would stare at me, well, there could be all sorts of things going on in their minds. But if they do know ad they still would stare, well, than I don’t care because they know why I am ‘smelling’ the paper. So, it is kind of like.. taking the potential prejudice away by explaining why I do what I do.
But what does this say about my confidence? Does it mean that I am very insecure? And that I would like to control everybody’s mind with the truth, my truth? Hmmm, I actually am not sure what to think of this. I would like to say that I am always very confident and that I don’t care what others think but that would be a lie. Yes, I have a lot of days where I feel confident but that doesn’t mean that I don’t care when others are watching me because of the things I do (due to my impairment).
I also have a lot of days where I am not even a bit occupied with what my environment thinks of me. I think it has something to do with the fact that I really don’t like injustice. And when others do not understand the situation that I am in, it would feel like an unjust moment. And I have the urge to correct it by explaining it to them.
Two weeks ago I talked to a man who is also visually impaired but he got it three years ago when he was 50. He told me he got very tired of explaining to others about his vision loss and that he didn’t like to talk about it. Meanwhile, he was very occupied with what others would think of him when he did not recognize his friends on the streets. He thought others would find him arrogant by not saying hi. So I told him how I felt about it and then I realized that it actually takes a lot of confidence to explain to others what is going on. Instead of not saying anything and feeling uncomfortable by not holding yourself back and not being yourself around others.
I would like to end this post by saying that there is not a right or wrong way to ‘be visually impaired’, as long as you find peace within yourself and this is how I find mine :)