Blogs & News

Yellowstone’s Blog (4) CVI & Self-Identity

photograph of Yellowstone national park
Yellowstone is a teenager with CVI who was diagnosed a few years ago.

Our advisors note:

This blog from Yellowstone, a teenager with CVI who is still at school, discusses self-identity.  

Yellowstone is conscious that she is not aware of what she looks like.

Like many with CVI, when it comes to faces, she can only see one part at a time and can’t put the pieces together mentally to form faces.

Yellowstone also does not understand how others see her and does not know what other people look like. So what does ‘attractive’ or ‘cute’ mean then? Yellowstone is unable to understand the concept of ‘cuteness’ because when it is based on what someone looks like, often facially, she has no concept, and can only guess - not really knowing what she is trying to guess.

This is an area we believe has yet to be researched in relation to CVI. We have spoken to others with CVI and as with everything in this subject, there is a broad range of experiences, some similar, some not, with each being unique.

By sharing this blog we are opening a conversation with our community. Is this an area that needs research? We will keep you posted, and we thank Yellowstone for letting us share what we believe is an important topic.

The blog picks up on a discussion about Nicola McDowell’s blog 30.

Yellowstone: I’ve been reading Nicola McDowell’s blogs for a while now. I found her Blog 30 about not being able to visualize things really relatable. I think it’s a little different for me because I was born with CVI and have never really created ”mental images” of things, but I have been able to, for want of a better term, ”visualize” things with my other four senses (my mom was surprised to find out that my dreams have a sense of touch; I was surprised to find out that hers don’t). I’m pretty good at doing math in my head, I just don’t do it in a ”visual” way in my head. I’ve never even bothered to try to visualize what something might look like if I wore it; I don’t really know what I look like. So by extension I don’t care that much, which is probably why my standards for ”looking good” are something like, ”make sure I’m clean and wearing clothes that fit”, and why I don’t really have any clothes other than T-shirts and jeans and I’ve never worn makeup.

We shared this with Nicola McDowell who replied:

“Oh that’s a cool, lovely response! You can pass on that I am exactly the same when it comes to makeup. I only wear it occasionally and hate doing it! I can never visualise what my hair might look like cut a different way, so I just keep it the same!”

Yellowstone: I’m glad Nicola McDowell liked what I said. Whenever I got a haircut as a kid it would just be something like: we went into the Hair Cuttery (hairdressers), the person trimmed off a couple of inches, maybe gave me a lollipop because I was a kid, and then we left and that was that. I’m not actually sure when I realized that other people could tell when I’d gotten one, much less whether it ”looked good”. I generally just keep my hair tied back to keep it out of my face.

There is an activity that’s popular with the girls at my normal summer camp, known as the Blind Makeup Challenge, which is pretty much exactly what it sounds like; people trying to put makeup on each other while blindfolded. I don’t participate in any of this because for me, doing the Blind Makeup Challenge wouldn’t be very different from trying to put on makeup for real. I don’t really know what I look like (and everyone tells me something different), and wouldn’t even know where to start. When I was younger I didn’t even realize that other people knew what I looked like (I didn’t really know what they looked like, or what I looked like for that matter) and walked around with messy hair for years because I didn’t see any reason to brush it (my mom tried to explain to me that I looked different than the other kids did because of my messy hair, but at the time my CVI was undiagnosed and I also didn’t listen to her because she was my mom). Nowadays I brush my hair every day, tie it back, and be done with it. Mostly my outfits first have necessities (i.e. it’s comfortable, I can safely do whatever I’m supposed to be doing while wearing it, and it has pockets) and then if I even think about what I look like, I try to draw as little attention to myself as possible because I don’t like getting asked about my appearance (I got braces this past August, mainly for cosmetic reasons, and I couldn’t tell there was anything ”wrong” with my teeth, but I got metal put in my mouth anyway for something I couldn’t even tell was a problem. I told my mom it was a waste of money).

I have pretty basic clothing items, so mostly everything goes with everything, or at least all my dress clothes go with all my dress clothes, all my gym clothes go with all my gym clothes, and all my regular clothes go with all my regular clothes. This is on purpose, so I don’t even have to think about what ”matches” and what doesn’t. My sister really likes coordinating her outfits the night before she has to wear them, especially the colors. I don’t really get the whole concept of ”complementary colors”.

I also don’t really understand what makes someone ”look good” even without factoring in makeup and hair and clothes and all that. For example, at the Super Bowl (sort of like the World Cup for American football, but with an overwhelming amount of patriotism even if it’s for your own country, a halftime show by a popular singer, and expensive commercials thrown in. As you can imagine, I don’t often watch this), two years ago, we didn’t really know who to root for because neither of my parents’ home teams were playing, so I went around at school asking who to root for. My math teacher told me to root for one team because one of the players was cute. I repeated this to my family but couldn’t remember the player’s name. As soon as we turned the TV on, though, my mom could immediately tell, even though all the players looked pretty much the same to me. Later, I was teasing my mom for agreeing with my math teacher, and she asked me what made people cute to me, if it wasn’t looks. I didn’t have an answer for that, and I still don’t. To me, people just look like people and I’m not really sure who ”looks bad” or ”looks good.” 

I feel like I’ve probably been forced more to learn with my vision, but that’s kind of what my first blog was about; that in some situations I actually prefer not looking at things.

People have told me things like that it sounds nice to not have to think about what people look like, but I sometimes have tried to figure out what exactly other people think ”looks good”. The few times I’ve tried Googling it, I’ve always gotten results such as, ”It’s different for everyone”, or ”Different cultures view things differently”, or ”What you think everybody considers ’attractive’ is wrong,” But none of them ever explains the ”What you think” portion, which is the part I’m actually trying to figure out.

Recently in my Spanish class we had an assignment to describe pictures of people (and ourselves) in Spanish. I had to explain to my teacher that I knew the descriptive words but didn’t know what I looked like and couldn’t see the pictures, which is the opposite of the problem that most of the kids were having. What we ended up doing is that she wrote descriptions in English and had me translate them, so it wasn’t that big of a deal. We also learned these descriptive words from a music video for a song called ”Guapo”. ”Guapo” means ”handsome” or ”attractive”, which just a guy singing about how he’s so handsome that he doesn’t need to read or work or help out at home or have a personality. (This reminded me of the song ”Gaston” from Beauty and the Beast) For reasons discussed, I didn’t even know what to think. That video was pretty hard to understand (even with subtitles) when you don’t know what people look like.

I don’t think I’ve found anything on how people with CVI experience things like fashion trends, but to me it seems sort of obvious that someone who can’t see very well would view that stuff differently than someone who can. 


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