Discrimination? My experiences - shedding light on some struggles

Okay, so this is something I've been thinking a lot about. I write this, only to describe what individuals like me ( and so many many more) have to go through . Why is CVI so much of a taboo? I'm constantly realizing how much discrimination and wrong information is being held at individuals with CVI - or any form of brain damage even. I can only speak from what I have experienced myself, but seriously.... What is happening? One thing I just realized i got - was at the conference we held here in Iceland. So, I do my lecture, opening up my heart and mind, telling people how this actually is, almost tearing up. Afterwards I of course got a lot of good feedback and questions. But what stabbed me was an opthamologist who was present. She thanked me for my story and then started to diminish it infront of everyone. She said that this condition is only found in newborns, and after that there is not a problem. She said that people have known about CVI since World War 1 – wich is true – but why doesn‘t anyone bring it up? She said that they still didn‘t think anything of it right now. As if people stops being blind! Opthamologist and neurologists are never tought about CVI as they go to school to learn. It doesn‘t exist in diagnostic code systems ! That‘s why she thought nothing of it. So, why did she show up at the conference if the only thing she did was diminishing our stories?

Another thing is when I found out I might be affected by CVI – We went to the opthamologist, who claimed he knew about me having it, since I was a baby, and he hadn‘t told us just because he thought it wouldn‘t affect my life that much. Or when he said that when I came to see him, he thought I was there to ask him to write permission for me to drive. DRIVE....

Later, I went for a lesson in learning how to use my white cane, as everyone does. As I walk down the corridor I came across this man, the opthamologist. I greet him as I usually do, then he says – Why are you spending your time on this? ( the cane), you don‘t need this – you see too well for that!

As a matter of fact – not long after this I got the actual results of my vision – 4 -5 % .

My mom always had a hunch I was visually impaired, as I constantly looked down on my feet, when getting around, lost my room in my own home (doors all looked the same), leaned close to my reading materials, tripped, fell, stumbled upon people and things. She talked about it to my opthamologist, teachers, and all kinds of people but nope....

I could read, write, watch tv, look into someones eyes ( sometimes hard though) etc. etc. My mom was told I was stupid, lazy, unenthusiastic, and not willing to learn. As I did well in linguistics but very badly in math ( couldn‘t see the squares or lines in the books) – I just was stupid enough to let people think I was visually impaired. Sport classes! Never could of course see my legs running, the ball flying, the other kids until they were almost on me ... still put in the middle of everything. Why? Nobody knew. Why could I sing, if I couldn‘t read the notes?.....

Again, I could go on and on about my experiences, this is only a glimpse of what an ordinary individual with CVI goes through every single day. My purpose of writing this down is only to shed light on what is needed to do about all this. There are some wonderful people working on this – but WHY doesn‘t most people appreciate this – just like being fully blind – or deaf? Impairment is an impairment people! Wake up!!

Hugs to you for reading all of this <3

Dagbjört