There are certain phrases or sentences that we use in daily life without thinking. They are harmless to most people, but when it comes to someone with CVI we have to pay attention to them. They can cause fright, sadness, anger, anxiety or confusion to the CVI individual. All of these phrases have been said to me, and have caused all of those negative feelings. Now, I want to say, I'm not blaming anyone that said them at all! My CVI wasn't diagnosed until 2018 - so how should people have known? I wrote about some of these phrases, the impact, and my suggestions on what to say instead.
,, You saw this yesterday, so why not today?"
This sentence can kill whatever motivation you have to use your vision while doing a task. It causes sadness to us CVI'ers, cause we feel like we're not doing well. We want nothing more than impressing both you and ourseleves, but we can't when this phrase is used. While we're children and haven't learned about our condition we can't answer this question. Which makes matters even worse, and leaves us more frustarated and confused. As I have learned more about CVI I now know that the answer to this question can be a lot of things. Depends on how high level of visual fatigue the individual has, - it depends on if they have visual field loss, and it can depend on how their head is positioned. ( tilted to either side or facing down f.x.). A better phrase would for example be : ,,I see that you are tired today, maybe we should switch tasks, you might be in a better place for this one tomorrow". This way we can try to do something else instead, like do a tactile task - or listening!
,,Look at the __________"!
I never knew why this phrase caused me such heartache - until I was diagnosed. Why could someone point something out and I couldn't see it? For example a bird flying by, a rainbow or a dog? After someone said this to me I honestly spent the rest of the day fiourious with myself - What in the world was wrong with me ?? This type of CVI is called Apraxia of gaze, and is very common. Instead of asking the individual to look at something you might want to say ,, There is a ____ ( bird, dog, rainbow etc.) there! ( and then describe the object you are pointing out. )This way we know how the object looks like and we can share our opinions on it without having to search for it visually.
,,Look at your toes when you're walking"..../ ,,Stand tall"
This was a big confusion for me. Due to my lower field loss I frequently trip and fall over, expecially as a kid. When that happened, people would say to me ,, Look at your toes when you're walking. So, I ultimately always had my head down when walking around. When I would walk past someone with my head down, they frequently would say ,, Stand tall". So - what was I supposed to do? Look down? Or be upright? I was only a child/teen - I couldn't say: Well, you see, if I stand tall I will bump into something and fall and hurt myself - but If I look down I look ackward to everyone around me. So , which one is better to do ?" Because I can't see down you know". Here it might be best to encourage a child to use white cane. ,, Don't you want to try to use your white cane here? Otherwise it will be dangerous, you might fall. And it's not good for your back to be bent down all the time". If the individual doesn't have a cane, it's probably time to talk to an O&M specialist by now.
., Have a seat over there"
This phrase, in all it's forms and versions ... is soooo infuriating. ,, Over there" isn't telling us anything. As a result we stand still thinking what we should do next, maybe not knowing to say we don't understand that sentence. But we also don't want to make people feel akward by saying ,, I'm blind/ visually impaired, I don't get what you mean" - even though that is what we should do! And kids probably don't know to respond that way. Here, is better to use words of direction, f.x. There is a chair to your left/right - you can sit down and wait for your turn" This way we also know better where we are in space.
,,You can read text, why can't you then read numbers or sheet music?"
When hearing this phrase - again - in it's many shapes or forms... I start thinking - ,, what is the point in trying to explain my problems if nobody listens to me?" I know it's not the way to think, but sometimes I can't help feeling that by saying this people minimize what I'm going trough. It wasn't until very recently that I could answer this question, by saying ,, the damage in my brain severely affected my ability to read numbers and sheet music, but it didn't affect me when reading text. Numbers, sheet music and text are all processed in different parts of the brain." Even if I try to explain by answering their question, I feel very few people will understand. Instead of rephrasing this sentance, I would omit it completely , best is to show interest in what the individual is doing, by saying for example ,, What are you reading?" That way we can tell you about the book; and you might find something interesting to read for yourself!
,,Hi, how are you.....?"
Ok, now you might think I'm mad.. how can this cause something negative ? Well, you see, you have to add something more to this sentence. Introduce yourself! Here I don't mean the individual's immediate family or closest friends, but what about someone that the individual hasn't seen for quite a time? A former school/workmate f.x.? The one affected by CVI might have trouble recognizing you. And what is important to remember here is that this is most important when someone has face blindness But This also applies to someone who is NOT faceblind. The individual might not recognize your voice anymore. So, if you haven't seen eachother in a considerable amount of time - always introduce yourself! :)
,,You see too well to use any visual aids"
There is nothing that exists that you can call ,, mild CVI". This phrase, which was said to me by my opthalmologist left me confused, broken and sad - even still does. CVI always has a big impact on everyone affected, however it manifests itself. I remember when I had my first O&M lesson, learning how to use the white cane, I met this same opthalmologist of mine. and greeted him. He then said ., Why are you wasting your time using the cane, you don't need it cause you see too well". This comment still leaves me confused and sad. I'd rather say ,, This visual aid might not work for you, but maybe the next one will". People with CVI might not need all help products there are, but definately they will need some of them.
,,Search a bit more"
This was a big source of sadness for me. I have extremely limited visual field, so it's very hard for me to search for things. I remember when I tried to search for f.x. a book in my room, I stayed there for several minutes searching, came back out and told my mom I couldn't find it, she'd say ,, search a bit more" - and then again same process, I in there for several minutes, coming back saying I couldn't find the object. Then mom would enter my room and pick up the book I was looking for from the table which was right infront of me. I remember always feeling so worthless ( still do ) when I couldn't find something that others had no problem with locating. Instead you can suggest where the object is - ,, Is it on your table? ( etc). That way we specifically know where we can look instead of scanning a whole room.
So, there are many such phrases. This isn't all of them, just the ones I had in mind just now. I still feel the nagging worthlessness writing this - as I felt when this was said to me. But again, I wasn't diagnosed until 26 years old, so how should people have known? I'm not blaming anyone at all. And also, do not fear if you say some of these things. It's just something to have in mind. You can make mistakes. This can be hard for everyone involved. You're doing awesome! <3
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