In her Blog 10, Yellowstone started explaining the difficulties and frustrations both explaining her vision and understanding our (those of us who do not have CVI) vision.
In Yellowstone’s Blog 16, around difficulties at the Movie Theatre / Cinema, we suggested ‘overwhelming’ might be a good word to explain her difficulties.
Continuing the conversation, we try to find a simple way for Yellowstone to explain how she sees, so she can answer questions like ‘can you not see hands?’
Yellowstone: Yes, I think ”overwhelming” is a great word to describe my situation, and I use it when people’s questions are open-ended enough that I can. The problem is that they rarely are. Usually, people ask me questions along the lines of ”What does it look like?” and ”overwhelming” doesn’t really make sense in that context unless the person already knows about CVI. Here’s a particularly difficult example that happened recently:
At my summer camp, I’ve been training to become a counselor (which involves watching the kids/doing activities with them). A few weeks ago, a woman from an organization outside the camp came to talk to us about leading kids, which is why my mom has dubbed her ’Leadership Lady’. During that time, she spent about ten minutes talking about being open to different perspectives (I’m just adding this because it makes what she did next seem ironic). When she was done talking, she had us do an activity that was supposed to show the importance of ’communication’ where we had to line up in the order of our birthdays without talking, so everyone started making hand signals at each other. You can probably see why this might have been a problem for someone who has trouble seeing. I told my church’s youth minister about this, and she said her daughter, who is dyslexic, would have had similar problems to me. Leadership Lady had seen my cane earlier, but I cut her some slack because she probably had the activity planned beforehand and didn’t know there was going to be a visually impaired kid until she got there. I explained to her that I couldn’t see what the rest of the group was doing, and Leadership Lady said, ’Oh, can you not see hands?’
I’m not sure how anyone would answer that question, actually. What does ’not seeing hands’ look like? Did she think that to me it looked like everyone’s hands were chopped off? Regardless, she was expecting an answer, and I couldn’t come up with anything better than ’I don’t know.’
Leadership Lady came back a week later, and this time I was hoping she’d planned a little better because by that point she knew I would be there. Just in case, I went up and asked her if there would be anything potentially difficult. Then my counselor specifically mentioned an activity we’d done previously that had been difficult, which was where one person looks at a picture and describes it, and the other person draws it without talking. Leadership Lady said there wouldn’t be anything like that... and then did exactly that. I explained why I couldn’t do this and asked what she wanted me to do, and she kept suggesting activities that would ’keep me occupied’ or whatever, but wouldn’t enable me to learn what the other kids were supposed to be learning. Eventually I left and shadowed a counselor for a group of younger kids. This was much more educational.
The point is, I’m not just getting questions such as ’What’s the problem?’, sometimes I’m getting questions like ’What does it look like?’ or ’Can you not see hands?’ and it can be hard to answer those. But when I do get broader questions like ’What’s the problem?’, I can (and do) use ’overwhelming’.
CVI Scotland: If you had joined in the exercise, there would have been lots of moving hands each meaning something different, to see, select from, and interpret.
For most people with CVI, this is not possible to do, and you knew that you would have been no exception.
So, overwhelming answers some questions sometimes but does not answer questions like ‘can you not see hands?’ Uuuumm…
How about we think of vision like a television screen, as televisions have moving pictures with sounds. They don’t have depth but let’s leave that for now. The tv turned off is all black, like a black rectangle, easy to see.
If the only thing on the television was a hand, like below, we imagine it would be pretty quick and easy for you to both see and identify as a hand. This demonstrates that you have the capacity to see and identify hands…
but not always.
As more complexity is added to your ‘tv screen’ it gets harder to see everything at the same time. Seeing nothing (a black rectangle when switched off) or one thing (a still hand) is easy. With real life, in brain terms, where a group of you are together and you are expected to be able to see and interpret hand signals, that single hand you can see is lost in a sea of thousands of demands on your brain at the same time. This image (below) we know is not a perfect representation from your summer camp description, we tried to find an image of a group of young people doing something together showing hands, hopefully it will do to explain the point.
It’s not that you can’t see hands, it that you can’t find them if you don’t know they are there – and that doesn’t mean you don’t know most people have hands at the end of their arms!
The hand sign exercise was extremely demanding. In addition to being visually complex, it is real people (people are the most complex ‘things’ in brain processing terms), there is movement and likely noise even though you are being required to interpret a sign. Plus, it was new to you so you have no existing memories to help you. Plus, we imagine it was important to you, so there was the motivation but also the pressure to do well.
So, what could you do differently? The only thing we could come up with at present, and this is for everyone not just you, is to ask what people plan to do in advance, and ask more questions if necessary, and then think about a way that would work for you but ideally include you – so for example everyone sit in the same place, ensure quiet, go one at a time, slowly, and allow time to process and think.
The short answer to the ‘can you not see hands?’ question, is yes and no, or sometimes, but that doesn’t really help – but we are not sure there is a short answer.
Yellowstone: I think you’re right about the seeing-hands thing, but I don’t think that would make a whole lot of sense to someone who didn’t already know about CVI. I agree that asking ahead of time is a good strategy, only in this particular case I did do that the second time, and she wrongly answered a very specific question.
CVI Scotland: Trying to find a simple explanation shows how complex understanding each person with CVI is. We appreciate you still need a simple answer though.
For you, meaning everyone with CVI, there is no simple answer to the questions ’how do you see differently to those without CVI?’ and ’how do we, without CVI see differently to you?’
We do agree it would be good to have some sort of simple reply that would apply to many situations, not just the ’can you not see hands?’ question.
It needs to be simple, not for you but for the people you are explaining it to. Most people don’t realise your brain creates your vision, and explaining that you see with your brain is a leap too far for many.
How about, to start...
Your generous donations will be put to immediate use in supporting our charity...
At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.