Hi all!
There is one thing about CVI that I couldn't not write about on here. While I completely understand why this term is talked about - It's a common misunderstanding, a myth, that needs to be corrected ASAP. Not only for CVI - but for all disabilities and/or conditions.
You might relate to this when your child was first diagnosed. The doctor might have said - don't worry - they seem to be on the ,,milder" side of CVI.
You see, CVI (just like any kind of blindness) is a SPECTRUM. When the word spectrum is mentioned you might visualize a line - with very severe case on one end ( for example complete blindness) - and on the other end very subtle symptoms ( very few types of CVI present.)
This is not the case in any way.
A better visualization for a spectrum would for example be the color wheel.
This can be said about a lot of conditions/disabilities. In other words - nobody is exactcly the same.
If we take a look at the color wheel we can see both individual colors and mixes of them.
Do you see red? Yellow? Orange? Green? Or blue? - or all of these at the same time?
Let's take an example of a completely made - up random CVI individual. They might have :
Lower visual field absence or loss
Prosopagnosia ( difficulty processing faces)
Simultanagnosia ( difficulty or inability to see more than 1-3 things at a time)
Dyscalculia
Dyslexia
Dyskinetopsia ( difficulty or inability to see things that move)
These are just a couple of symptoms from an endless list of possible ones for CVI.
Now let's pick a color from the wheel for each of the symptoms. (F.x. Red for lower visual field absence or loss .... etc.) Try to color all of them on a white piece of circle. Here we have a personal CVI color wheel for that individual. No two persons have the same colors in their wheel (symptoms).
The point being : The CVI individual themselves will never experience their specific condition as a mild one.
This can of course be said about other things as well, fx autism or ADHD. Nobody's case is ever mild in the mind of the affected person.
I get diagnosed at age 26 in 2018. After being beaten down by many school mates and even some teachers. Being told I was lazy, stupid or cognitively impaired. After believing those statements myself and dragging myself down because of them. Nothing is mild about that.
I didn't know about my blindness, much less the nature of my symptoms and how they manifested themselves. But as I learned more ( and am still learning more) I realized there is nothing mild about any of them - whatever the severity is for each individual type.
While I again, completely understand why people want to hold on to the term ,,mild" when it comes to CVI and other things - we as people who know /work with CVIers need to do our best to stop using that term. CVI will always have a drastic impact in a person's life, regardless of how it shows itself or when in life it occours. CVI is always CVI.
I will include this beautiful powerful Ted talk. It's about autism. Only thing we need to do is to replace the word autism with CVI. Or add the word CVI beside autism. I bawled my eyes out listening to it. This is a part of why I wrote this blog post.
I strongly encourage you to take 10 minutes and get inspired by this powerful beautiful person.
,, I don't experience my ( CVI) mildly. You experience me, mildly"
Hugs - over and out
Dagbjört