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Writer's pictureDagbjört Andrésdóttir

This makes me feel so sad and angry

Hey guys, I know I posted a blog yesterday, but I saw something and just had to say something. This comment that many people say ,, You can choose to use your vision or not”


WRONG!!


When CVIers get visually fatigued their vision turns off. So we can’t use it at all. It’s gone. Even if it partially shuts down, then it’s also unusable. We don’t think ,,ok I am tired now so I’ll switch to hearing or touch.“ We do it by default, cause it’s our only option! I didn’t know I had CVI until i was 26 years old. I didnt know I wasn’t using vision.

It’s a bit like if you would want to use your computer instead of handwriting your work, but your computer would be frozen. Or if you wanted to walk, but your foot would be broken. Even if we want to use our vision, we aren’t able to!


It’s weird, but these comments about us being able to choose wether or not to use our vision we feel like we aren’t validated, ( at least I do ) I would use my vision all day every day if I could. I want to make people proud. I want to feel validated and respected just like anyone else :)

We have no choice but to switch to an alternative, our vision is off.


Another comment I hear often is ,, It’s so strange to me why you saw this yesterday but not today!”


Guys, it depends on how we are feeling, what we see and don’t see. Visual fatigue again. Let’s take an example. I have to ,,shut off my vision“ when singing, because I have to concentrate so hard on delivering the musical piece well. I cannot use my vision properly in a crowded place - too many distractions… noise, people, etc.


I saw a good example of this the other day when I heard from someone that wasn’t understanding why their child couldn’t find them in a shop. Think about this for a minute.

  1. The child probably was confused because of all the stuff, noise, people and chaos at the store.

  2. The child probably had a busy school day with a lot of studying, and playing with friends.

  3. Maybe the child wasn’t feeling well when they woke up, so they couldn’t function as they normally do

  4. Maybe something happened recently that is worrying the child

  5. Yesterday the child might have seen you becacuse the school day wasn’t as hard or they were feeling fine physically or mentally when they woke up :)


All of this can cause visual fatigue - which makes it even harder to find you in any place , let alone a store.


So, I just wanted to remind people how they speak about CVI. Some comments make me ( and Im sure many more CVI people) sad and angry. All we want to do is to fit in and feel normal. That doesn‘t happen when people are unaware of how we might feel when they comment on us or our CVI :)


I want to stress, I understand that people need to learn those things as they dive into the CVI world <3

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