Wednesday, July 15, 2015

Living in the Borderlands

The absolute hardest thing about living with my vision condition is that I don't fit into any definition. 


Sighted: You can see. You use vision to gain information and accomplish tasks and enjoy sensory experiences. 

Blind: Legally, your acuity is less than 20/200 or your field of vision is less than 20°. You use vision if you can for some tasks, and when you can't, you use alternate non-visual skills, like Braille. 


I don't fit either one of those! 

So I talk to blind people, like a friend tonight at a meeting and they invariable say what he said. Why aren't you legally blind? If you can read the eye chart, doesn't that mean you can see? Your eyes are healthy? Doesn't that mean you can see?

You know what? I TRIED to be sighted for the first thirty years of my life! IT DID NOT WORK!!! Why can I see steps but not tell where they are? Why do objects in my house disappear until I touch them? Why can't I recognize faces? Why to things turn invisible when they move? Why is someone walking in from my peripheral vision not there? Why does wearing glasses (or contacts) give me a migraine within 20 minutes every. single. time? Why does light wash out a scene or why does twilight turn everything into nothingness? How can I look right at something I'm searching desperately for, and not see it? Yet when I touch it, suddenly I can see it? Why do curbs look flat and shadows look like curbs? Why is the visual world terrifyingly confusing all the time? Why does reading feel more tiring than running a marathon? Why do I have no idea what eye contact is supposed to do? Why am I constantly running into everything? Why do people look at something and point and I can never figure out what they are talking about? Why do my eyes play tricks on me and stuff looks like something else all the time? Why are museums the most boring places on the planet even though I love history, just because I have no idea what is behind the glass? Why do basketballs come out of nowhere?

Can I see? Yes. 

Can I use vision? No. I'm not sighted. 

But my "corrected" vision doesn't fit the definition of blind. And I CAN see. I just can't use it. I'm not blind. 

There is this tidy crack just between sighted and blind. A borderland, as author Beth Omansky put it. I live in that borderland, and what it means is I'm rejected by both groups. 

You should see, says the sighted group. You should drive and read and recognize me. Well, you know what? I tried. I can't. I tried so hard I gave myself panic attacks. It DOESN'T WORK. I can't use vision like you can. I don't fit in your group. 

You need to fit the legal criteria, says the blind group. We have gatekeepers to keep shysters like you out. You can't get any help or accommodations or solidarity from us! You don't belong. Well, you know what? Maybe your definition doesn't include me, but maybe it should. But I don't fit in your group either. 

So to all the people in my life who have ever told me I was imagining things or faking or trying to get attention or clumsy or absentminded or that I should do things differently, or just LOOK HARDER, you can all just be quiet. Just because neuroscience doesn't know everything about visual processing doesn't mean I'm making this up. Just because eye doctors have a rigid, narrow definition of sight doesn't mean I'm faking. If anything I'm faking sight! And why in the world would I invent this anyway? It's not like blindness is some exotic, desirable trait to have! I can think of a lot more interesting things to lie about, if I wanted to lie about something. But I don't. I just want to live my life. And quit having people tell me how I'm supposed to see and where I'm supposed to fit. 



  1. I just read your post on a Mothering forum about sewing and visual impairment. Thank you; your ideas were great! I have poor vision plus a cognitive visual impairment and like you can't see moving objects (why would I invent a problem where I can't see the new Star Wars movie? Sheesh.) Yes, it's a strange borderland. I knit, can't see what's happening but my face has to be pointed at the knitting. My neuro calls it blindsight. Fascinating topic. Now i'm off to read your blog.

    1. Oh my goodness! I'd love to chat sometime! It is so rare to find someone who also has a cognitive vision impairment and it sounds like we have a few other things in common too. If you'd like to chat more, my email is on my profile.