We have recently heard from a young person with CVI who has some important opinions on common misconceptions about CVI, and they have agreed that we can share them. The young person is a teenager from the USA who was diagnosed a few years ago, and is academically able in a mainstream school. Below is the actual conversation, edited just slightly to ensure anonymity.
Their name has been changed to Yellowstone.
This is brilliant!
Earlier today I was struggling with how to explain to my grandma (whom we don’t see often) what CVI is and how it affects me, when my mom suggested sending her a link to your website or another one about CVI. I told her I was hesitant to do so, because every CVI website I’ve found so far is either written by people who don’t have CVI themselves, or is written by one person with CVI whose experiences are their own and no one else’s. Either way it didn’t often tally with my own experiences. I explained some of the things I saw in your newsletters that I didn’t necessarily agree with, and she suggested I reply to your newsletter and that you might like to hear from me. I wondered if you would even get my email, but I decided to send it anyway
A big thing I don’t really agree with that I’ve been noticing a lot is that every CVI website I’ve been on, as well as my IEP (Individualized Education Programme, for children in the USA with additional educational support needs) agrees that people with CVI (mostly they say ”children”, but there are adults with CVI too and I’m sure this applies to at least some of them, and I’ll be an adult myself in a few years), tend not to use their vision while using their other senses (often referred to as ”impaired visually guided reach”, but it applies to more than reaching). This is true. But what I don’t agree with is that they usually refer to this like it’s a bad thing, or like ”we need to eliminate other sensory stimuli so ’the child’ can look!” I hate it when people try to do this to me.
What people who don’t have CVI don’t realize, is that I only look at things when I absolutely need to. I look at things when I’m reading, for instance, but most daily activities don’t require looking. I’m not looking when I write this email. I actually like to turn the brightness all the way down so it’s not shining in my face and it doesn’t force me to look at it, but the computer assumes I’m looking and won’t let the brightness go below 1%. The point is, I don’t like looking. It’s taxing. Most of the time, I can get the same information from my other senses. When I don’t look at things because I’m using my other senses, it’s not because the other senses are blocking out my ability to look, it’s because I don’t need to look anymore, so I don’t. A lot of CVI websites don’t seem to realize that not looking at things is often a better option, and I would like to see that in a CVI website. I still don’t know if you’ll get this email but if you do I hope it helps.
We know a boy a few years younger than you who has CVI and he can’t look and do anything else at the same time, and we definitely don’t see it as a criticism, in fact I think he is incredible and awesome! With this boy, (and many other children we know), it is a constant balancing act, and sometimes he chooses to look, other times to listen, and sometime to feel, but none at the same time. He can only attend to one thing at a time. For many years he chose life with his eyes closed, because looking was so overwhelming for him. Now, like you, when doing something he enjoys, he does look, but he uses all of his senses, particularly touch.
I often do not look while doing something else either, but what I don’t like is when people think not making noise will make me able to see something better. Sometimes it’s actually the opposite, and anyway I keep having to explain to people that seeing and perceiving are not the same thing; i.e., I don’t need to see something to perceive it. I think just wording this differently would be good.
Thank you for sharing about the boy. I rarely ever hear about people with CVI close in age to me; most of the time I either hear about small children whose parents are writing about them or adults writing about themselves. I have never met another person with CVI so I have never really had someone to really ask questions of.
(Replying to a question about the boy using a keyboard) The boy would never be able to visually process something as complex as a computer keyboard, but hiding it, and initially putting some tactile sticky pads on certain keys, he learnt to use it by touch alone.
He can skip forward and skip back, pause, change the screen size and turn the volume off when it gets too much. He can also flip the screen. Not only that, he can go to any computer with any keyboard and work out which keys do what within seconds - clever huh?
I’m not sure if you have seen this page Not Looking To Listen. It was a girl a few years older than you, and when people were talking to her, to hear them, either she had to turn around, or she needed the person talking to her to turn around. Of course people thought she was being rude and that she didn’t want to listen, when she was trying really hard to listen.
More and more young people are being diagnosed, and we need to understand your worlds - who better to explain them to us? You are our teacher, we need to learn from you.
Sorry I didn’t reply sooner, I went camping in one of the National Parks with my grandma yesterday and it slipped my mind. The trip was awesome, and I figured out that I could use a walking stick to feel for rocks and stuff going downhill (similar to the way someone would use a cane, although I haven’t had any cane training because my school considers it unnecessary).
I am also able to navigate a computer by touch alone. My computer has little bumps on the f and j keys (where you put your index fingers) to tell you where they are so you don’t have to look (and the best part is that this is part of the standard computer; it’s not anything specifically for visual impairment at all). I can’t really see a computer keyboard either. In fact, when I was in fifth grade (10 years old) we were using computers for the first time in school and I took forever to find all the keys, when my teacher suggested I learn to type with two hands and set me up with an (excessively visual) ”learn to type” program. Literally the only thing I paid attention to was where to put your hands on the keyboard and then I figured out the individual keys from there. It took a long time, but it’s been a few years and I can type completely without looking now. My mom says it’s actually kind of creepy that I’ll be typing and looking in her direction. I tried to explain that I’m not actually looking at her, since I’m not really looking at anything when I type unless I’m trying to copy something.
I have not seen a lot of your site other than the newsletters because for a site about CVI it’s ironically hard to navigate because of my CVI. I have had the experience of looking away from someone and they think I’m not listening to them when in reality I’m getting every word they’re saying.
Gordon Dutton adds…
This remarkable conversation shows that we need to not only listen to what those with CVI tell us, we need to believe them, and we need to recognise that they are our teachers.
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