looking at life through a platinum blonde fringe.

A letter to my teachers

on August 17, 2012

Dear past teachers
It has been 30 years since I left school. In that time my life has changed as I know yours has. I have learnt a lot of things about myself as have you.
A lot of you did some great things for me, some set solid ideas on what it takes to be a leader, teacher and person. Others didn’t set such a memory for me but you know what? That’s okay, I probably left a sour taste in the mind and memory of many of you as well.
So, one of the things I learnt about myself is that I have albinism. I am an “albino”. We didn’t know that at the time I was in your class. You may have suspected it because I had white blonde hair and fair skin, but we didn’t ‘officially’ know it. It affected a lot of things I did and said and you did and said though, and I’d like to explain how.
Albinism affects my hair and skin; you may not be aware it also affects my vision. I have a number of visual issues, some of which you may not have heard of. I have astigmatism, strabismus, nystagmus and monocular vision. I have photophobia and foveal hypoplasia. They all play a role in my ‘crap’ vision.
So how did this affect our relationship?

You: (seeing me looking at someone else’s paper during an exam or class) ‘don’t copy from their work‘.

I wasn’t, I couldn’t and I didn’t need to. I physically couldn’t see what they had written. My vision is, to put it bluntly, ‘crap’. I see at probably 6/60. Which means what you see clearly at 60 meters away I can only see from 6 meters away. So what you can see clearly two or three feet away – the next person’s test paper, for example, which might be 60 cm away, I  need to be >–< this close to. Chances are I was looking to see if they were still writing but trust me I couldn’t read their work.Unfortunately I didn’t have the vocabulary to tell you; because I didn’t know I had albinism, I had no reason to give you that made sense. I wasn’t, however, lying.

You: “What do you mean you can’t see the blackboard?”

I meant I couldn’t read the blackboard. No offence to your writing at all, but I needed to be incredibly close to the blackboard to read it. If i ahd to copy from the board, I learnt to write really quickly in a mishmash of shorthand and scribble while you spoke. Maybe I asked you to repeat yourself a lot so I had more time to write what you said. Astigmatism means the vertical and horizontal lines of your writing are unclear. I couldn’t  always see the cross line of a ‘t’ and it looked like an ‘l’.  A ‘b’ can look like a ‘b’, a ‘lo ‘, a ‘t’. The letter beside it may have made the b more obvious or it may have confused the issue. So even though I was actually the best reader in your class, I wasn’t trying to ‘act the fool’ or embarrass you when I stumbled over words on the board you asked me to read out loud. A way to simulate this is to use the clear panel from a window faced envelope. You can still see, but you can’t see as well. Its not an exact replication, but it’s close.

Having a green board with yellow or white chalk made it hard as it’s not bold or distinct. Black on white, navy on white, sometimes white on black works best, and I’m also finding that whiteboards aren’t better for a reason I’ll explain shortly. If you lightly rubbed something out and wrote over the top, it gave a cloudy effect to the new word, making it harder again. If there was any glare in the classroom, I struggled even more to read, as sunshine completely obliterated the board, and glare from overhead lights blanked out parts of the board. This is the photophobia. Glare/ light means my pupils dilate, which lets more light in through my iris, which in turn gives me even less vision because I get a ‘whiteout’ or ‘washout’ effect. Thisis why whiteboards aren’t the answer either. Glare on a white surface is just as hard, and the surface is glossy to boot.

Calling me out as ‘weak’, ‘lazy’ and a liar because I was sitting in the front row didn’t help me, as I would have to have been at your shoulder as you wrote to see clearly. Calling me out as ‘weak’, ‘lazy’ and a liar because I wore glasses didn’t help either, as while most times glasses make it easier to look, they don’t necessarily make it easier to see. Sitting in the front row helped but didn’t at the same time. Wearing glasses gave me the best chance I had of seeing, but if I couldn’t see, I couldn’t see. This is due to foveal  hypoplasia, with the fovea in the eye being a critical part of visual determination. This is where visual acuity is at its best. Hypoplasia simply means underdeveloped, which occurs – or in this case, doesnt occur – in utero. So if this critical part of my visual production is underdeveloped, it remains so for life. No amount of magnification, surgery, lenses or hope is going to make it better. Sometimes glasses mean things are clearer for me, but still only up close. So they help me see a bit more clearly, but from a couple of metres away in the classroom… Zilch help.

You: “Get your head up from your book” or “put your book straight, not turned”

Again with the up close thing. I need to get in close so I can see detail of what I’m reading or writing. The font might be really small or faint. As I’m writing, I might start getting even closer to my page as I’m concentrating more.

I have nystagmus which is an involuntary eye movement; often putting my head on the side or at an angle helps me to see a bit better through that problem. While as a rule it doesn’t affect my seeing (I’m unaware of it) my brain does this head turn by itself. This may be why I have a book at an angle or my head at an angle. I actually need to be reminded of my posture though, because my body contorts itself to see and work. These positions can increase headache backache neck ache and tension. The vision doesn’t necessarily cause these, often it’s due to the physical position I get into.

You: “I asked you a question” or “what do you mean you didn’t know? I was looking right at you”

I am unable to see clearly. If you look at me I may not know; I can’t see your facial features well enough. If you point at me I may not know as I can’t see the end of your finger. If you are standing in front of a window, a light or a bright doorway, chances are you are only in silhouette. I simply can’t see your facial expressions or subtle movements. Slamming your ruler on my desk, yelling my name or sending me out of the classroom for rudeness doesn’t help my confidence. Using my name the first time does. If I ignore you after that, I’m being rude. I also can’t see your raised eyebrow, eye roll or subtle movement, so please know I’m not being rude.

You: “Why can’t you just try harder to catch the ball / hit the ball?”

Know what? Kids who can catch and hit balls are cool. If I could try harder to catch and/or hit a ball, I would. I’d love to be cool. I have monocular vision, so I can’t use both eyes at once. I look at the ball being thrown or coming my way from someone I see the shape of, but then I need the other eye when the ball gets closer so I can hit it

I need you to try something now. I want you to look at something on a wall, maybe a clock, a picture… Focus on one spot of that point and cover or close one eye. Now, looking at the same spot, hot tuning your head, change eyes. See how you see the same thing but from slightly different angles or views? How what you’re looking at kind of splits when you only use one eye? Thats how I see. While I have peripheral vision, it depends which eye is working as to how much I see. The ball may disappear from view totally

I also have awkward distance vision. If I see stairs with a shadow falling between each step, I know there is a gap up or down. If there is no shadow, no yellow lines or other identifier, I can be fooled into thinking it is in fact a flat surface. So I can learn ways to determine depth. When a ball comes towards me, if I can determine its size against what is around me; ie a golf ball size compared to a person and a football size compared to a person, I can guesstimate how far away a ball is. If a ball is coming from above, or I have no identifiers, I can’t estimate its speed and when to hit it or catch it.  A small number of people with albinism can, but I think they hone this skill relentlessly. Or they’re just really lucky.

You: “that’s not how you use a microscope, I need you to use it properly”

Again, this is the monocular vision. I know a microscope has two eyepieces, but trying to use both bits at once sends my brain into chaos as it can’t work out which eye  to use. Please let me shut one eye or use a monocular microscope, still shutting one eye,  even though it’s not being ‘used’.

You: “look at me when I’m talking to you”

Oh dear. I am, I am. Honestly. Nystagmus means my eyes move, generally side to side. It’s not rhythmic, I can’t turn it on and I can’t stop it. When I’m stressed, this can get worse. I also have strabismus, which means one eye might wander off on its own. While I’m concentrating on using one eye, the other may be pointing at you or at the ceiling or a wall.  It’s not deliberate and I don’t know where it’s pointing. I can’t stop or start it. Again, when I’m stressed, it can be more obvious.

None of this misunderstanding was your fault. Neither was it mine. It was a result of miscommunication and ignorance. I now know a lot more about my vision issues and I hope I can now help you and newer teachers understand about having a child with albinism in the classroom. I will do so in my next post.

Until then, also know that a lot of my peers, people with albinism, are very intelligent. With the right tools and motivation, we can achieve. We have copious amounts of the ‘S’ gene – stubbornness, and often see our inability as a challenge. We may frustrate you and drive you crazy, but we are learning our way round our learning.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: