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Yellowstone’s Blog (15) Career Choices

  • In short, I have no way of knowing what my future might look like because I don’t know anyone like me and there aren’t any programs for people like me either.
photograph of Yellowstone national park, with a pool of blue water with steam rising, brown ground, green trees and hills in the background, blue sky with white clouds.
Yellowstone is a teenager with CVI who was diagnosed a few years ago.  

Yellowstone:  I have routinely faced the problem of not being disabled ”enough” to get proper support, because people get it into their heads that I don’t need it and that my parents are making stuff up. Another thing that annoys me is that most resources for CVI are for young children, so people don’t realize that CVI is something you have your entire life. It doesn’t go away when you become too old for color-coded toys. It doesn’t go away when you graduate school. It never goes away, and it affects all areas of your life.

A few years ago a teacher assigned us an essay answering the question ”What do you want to be when you grow up?” I had to explain to her that I hadn’t even thought about that yet because I wasn’t sure what I would be able to do as an adult. And if I’d continued with the level of support I was getting then for CVI (which was zero), there would probably be a lot of things that I still wouldn’t know how to do and wouldn’t have any idea how to learn. But she took me aside and said ”You are a very smart girl who is capable of doing great things.” Which definitely wasn’t true then, and I don’t think it’s true now either. She seemed to not realize that my difficulties in school would translate to the real world. Like how if I’m having trouble reading a table, I probably shouldn’t get a job that requires me to work with spreadsheets.

CVI Scotland:  We were discussing your choices and where you could get advice from.  Even with an excellent understanding of you, as you have, what with being you for your whole life, you need experts in the college courses or careers, to identify where issues might arise for you.  And together consider options to see if these issues can be managed, or not.  And to make a choice, as is your right, you need many experts to be able to do that across a range of subjects and careers.
Let’s use lawyer as an example – you are clearly clever enough, but only if it is accessible.  The course material could probably be formatted for you, but what about having to defend or prosecute in a court room stuffed full of people, where evidence might be difficult to follow videos, or police reports with complex diagrams or photographs that are difficult to see.  This is just an example, but with every option, each will need to be considered, and where adaptations are needed, are they possible and achievable?
The problem is too few people understand CVI, and it is different for everyone, so adaptations for one person with CVI will be different to another, so advice needs to relate to the individual and the career choice, not just the career choice and CVI, because CVI is not a single thing it is different for everyone.
How can you make a choice if you don’t know what your choices are?
Others will be facing the same issues. 

Yellowstone:  I was 12 when I had this conversation with my teacher, and while I’ve considered being a Special Ed teacher, I have no one to tell me how I might go about it. Things like getting a job and paying your taxes are rarely covered in school (except in my Special Ed class, which my mom thinks everyone should take regardless of disability but unfortunately that would be illegal), and even less so with specific problems like this. I’ve been invited to Zoom meetings where visually impaired people talk about their careers, but I can never get anything out of them because I have a hard time processing Zoom. And none of those people (from what I’ve seen) have had CVI specifically. I’ve never met another person with CVI, let alone someone older, so I’ve never had anyone to ask about what my future might be like. Most websites are geared toward parents of young children (although I do appreciate that CVI Scotland is more inclusive). I don’t even have TV characters to serve as a model because the only TV portrayal of a blind person I saw (in the colloquial sense) and actually liked was Toph from Avatar, who is twelve, and also eye-blind (the cause of her blindness is never specifically mentioned but if I had to guess I’d say she got cataracts as a baby).

In short, I have no way of knowing what my future might look like because I don’t know anyone like me and there aren’t any programs for people like me either.

It’s actually a bit of a funny story how I found Nicola McDowell’s blog, but it’s the closest thing I have (and might be the closest thing I’m going to have) to any kind of outline for stuff like having a job. I stumbled across her name (as I mentioned, I have a hard time navigating the website, although I’ve gotten a bit better, and sometimes I’ll see a label without being sure what the label is for because I’m not looking at anything else on the page) a few years ago and it reminded me of a video game we’d had to play in my Civics class where we had to run for president (I do have a point that I’m getting to), and you had to name your character, and my friend wanted to be ”individualistic” without giving the game her real name so she named herself ”Nicole McGonagall”, after her middle name and her favorite Harry Potter character. So when I was on the website I misread ”Nicola McDowell” as ”Nicole McGonagall” and I wondered how my friend’s screen name had gotten on the website, until I clicked the link and realized that wasn’t the case. My point is that Nicola McDowell is the only person like me I’ve even heard of (not met) who is married and has a job. The only one. It’s very hard to answer questions such as ”where do you see yourself in ten years?” when there’s only one person who has the same problems and managed to get where you want to be, whom you haven’t even met.

Rafael is a graduate journalist enjoying his career and is a great role model for young people with CVI.
ABC News


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