Archive | May 6, 2011

Growing up with a visible disability

 I’ve been watching the reaction to Lady Louise Windsor’s eyes since the wedding with great interest because it’s the same eye problem I grew up with and I’ve been seeing the same reaction from people to her that I grew up hearing.

 I think it’s major reason I still don’t like to meet new people. It’s the first thing a child born with a visible peculiarity becomes aware of. I call it a peculiarity because as a child you don’t notice that you are different because it’s what you’re used to everyday. What you notice is how people react to the visible difference and I’m afraid you learn early on there are a lot of shitheads in the world.

 I’ve seen the “Oh, how terrible, what a brave child!” or “poor child” reaction which I can tell you just makes you internally roll your eyes at stupid grown-ups. You see no reason, that you’re a “poor child’. You are just fine, thank you very much. And you know you aren’t being brave either, what is – is, period. This is how you see the world and most of the time you don’t know any different. I know I used to love messing with these, usually elderly* seeming ladies. It’s almost never a man.

 *When you’re small everyone is an old lady.

 My mom tried to discourage this as long as she could by putting me in a wide variety of rather fetching baby bonnets that had large bills. That only worked for as long as I would wear a hat. I still love to wear hats but I can rarely keep them on my head for long.

 You see the mean reaction where someone makes a remark, then, out loud, now, online but it used to be what they thought was out of ear shot and it almost never was. I had very good ears. Someone would make a remark about the cross-eyed kid or the child with the squint. One I could never figure out because I wasn’t squinting. And then say something really mean. Or the adult that pulls their kid away because disabilities can be catching.

 Mom and Dad would try and steer me away from people that did this, most often at church but other places like stores too or I would be told to ignore them because they were ignorant people. This also doesn’t really work because you have heard it and you are mentally making a list of people like that for future reference.

 You get the ‘invisible’ reaction. The “if I  pretend not to notice you then you don’t exist and I don’t have to deal with how you’re making me feel uncomfortable.” This is wildly amusing to a kid with any kind of impish impulse because of course, you have to make them notice you. And believe me, kids can sense this one a mile off. And it’s different from someone who ignores that you have something different about you because people who do that aren’t ignoring you.

 Then there are the ones you feel are idiots who ask you which eye you are looking at them with. Uh Duh, the one that is boring a hole in you for asking because the other one is probably looking at my nose.

 And then there are the best group who it just doesn’t matter to at all. These are people who are comfortable in their own skins usually so they let other people be comfortable too.

 I loved when I was working with kids because they ask you point blank, what’s wrong with your eye and then after you explain never pay attention to it again.

 I saw some articles online that say Lady Louise’s parents, Prince Edward and Sophie, Countess of Wessex her hiding her away out of the public eye and I doubt they were really hiding her away. They’re probably protecting her from dealing with people’s ignorance and potential unkindness. She’ll learn that soon enough from her schoolmates.

 I imagine she is going through the usual treatments although I haven’t seen her in glasses in any pictures. I know I went through eye exercises, pirate patches, and single lens glasses and then bifocals when I was four because strabismus can cause extreme farsightedness. They give you glasses to make you less farsighted which can be annoying if you like seeing. And finally surgery which may or may not work. My surgery worked because I now see out of that eye but cosmetically it when I hit puberty the strabismus came back. I now see out of only one eye at a time with the other contributing light and colour information but not much else. One eye is now nearsighted and the other is farsighted. So one works when I wear my glasses and the other when I don’t.

 The eye exercises were really boring. The first lady I had teach them didn’t know I could read so I have to admit I messed with her because I was bored and I admit I am an imp when bored. Maybe not an imp of Satan as Mom would call me but a mischief maker nonetheless and besides I always felt that grown-ups that treat you as if you’re stupid deserve what ever they get.

 The pirate patch was annoying because they would put it over my comparatively better eye and I would be totally blind. I used to move it at school, because I was being beaten up and shunned enough without running into the furniture too. I had surgery in second grade when I was seven as one of the first experimental ones. I’m glad they did it and I would love to know how the other girl who had surgery at the same times came out but I probably never will.

 Anyway, I hope the media leave Lady Louise alone. She’s fine just as she is and I’m glad she got to be part of the wedding.