Pick your battles

Hello all!

Yesterday I saw something really triggering. I’m well aware that you have to pick your battles and you can’t let everything affect you. I saw a video from a TVI that says she ,,specializes” in CVI. I don’t think I should post the video here, because it can be VERY triggering for many. This individual made a short video on instagram to explain CVI in 60 seconds.

However there wasn’t a single claim in the video correct. The main points that struck me were

• She claims that CVI isn’t about vision loss. This is completely ridiculous and not true. Yes, CVI is a brain based issue - but it is a brain based problem that results in vision loss. Brain and eyes have to work together.

  
  

• She claims that people with CVI can learn to see better. Again, this is soo far from the truth. The point is, that with time, those who are born with CVI or get it early in life, will develop their own compensatory skills ( using hearing, touching, smelling etc.) so the vision impairment becomes less noticable. This means that we who have CVI are actively encouraged to hide our visual impairment. This is what is gravely dangerous. Would you ever make someone that is ocularly blind hide their disability? No :)

  
  

• She claims that most people with CVI are children - and they have too profound disabilities to be able to ( with help and time) tell you about what they are seeing/not seeing. This again, is far from the truth. Most people just don’t know they have CVI yet. I was diagnosed at 26 - which yes, is far far too late, but I’m lucky to be diagnosed at that time, and not even later.

As I said, I’m well aware of not letting things affect me too much, but this particular video made me … just so angry. We all know that there are a lot of professionals that don’t understand CVI - as well as non- professionals. But when you try to work so hard to bring awareness - and then see something like this… I am literally tearing up right now. Our community of CVI and professionals is small but fierce. We ain’t giving up until this becomes as normal as talking about the weather. But man, is this triggering! We need to think twice before we post something :)

Hugs - over and out for now

Dagbjört