A teenager with albinism

If I were to define essential things a teacher should know about visual impairment one would definitely be to have to listen to a teenager at school talk about what it is like being visually impaired in school. This is why I have included the following account from one of my students, who kindly agreed to talk about her condition to me. I know it was not easy but it was very revealing and taught me some things I never realised myself. Read what she says and consider what it means to the way you as a teacher or parent respond to the young person in your care.

My name is Susan (pseudonym) and I am in my final year at a school in London England doing my ‘A’ levels, after which I hope to go to university to study theatre studies and drama. I have albinism. I understand albinism to be a genetic disorder from chromosomes that I inherited from my mum and dad. So I have two Y genes in my eyes that cause eye problems and low pigmentation.

When I am at school the things that affect me most are distance from the board, the way the classes are set up, glare on boards, the lighting in rooms and the awareness of teachers. If teachers don’t know anything about my eyesight it can affect my learning. If they know nothing about albinism then nothing is going to be done in the room to make it better for me.
One of my main problems in school is a subject like Maths. Maths is a fast paced lesson and if I’m not sitting in the right place I can’t keep up with board notes because I cant see them. So I have to copy off my friends, which is obviously not ideal for them.

Texts can be a problem. If the text is not big enough I can’t read it, but also if it is in italics I can’t read it. When you put writing in italics it makes the writing go really thin so I can’t read it. When its slanted some of the letters can merge together depending on the size and font of text. If every text is enlarged it helps so enlarging italics does help but its still harder to read than if it were for example highlighted in bold instead of italics, when it would be much easier to read.

With respect to size of text I find anything under point size 14 hard to read. Most texts at school are size 12 or smaller. 14 is the minimum size I can read but size 18 is better because it’s just so much clearer and less of an effort for me. Time New Roman is the commonest font but it is one of the hardest fonts to read for me. I always use Comic Sans which some say looks childish but because all the letters are separate and there are no serifs it’s easier to read. Another one is High Tower Text, which is smaller but its clearer so all I do is put it in a bigger size font. I always increase my line space to at least 1.5. I find it easier when the paragraph is justified with equal lengths on both sides. I’m not sure why I just find that easier to read. When the text is only left justified I find the different line lengths on the right margin harder to follow.

One of the things that affect me most is light, either too much or too little light. The glare you can get on the board is a problem for me. In schools they have artificial florescent ceiling lights. A florescent light shining directly on the board creates problems for me. To me

ceiling lights make the writing disappear. But when there is too little light it is equally impossible for me to read. Everything goes the same colour. So light is a major issue for me. Normally I’d ask the teacher to use natural light and if there is too much glare I’d have the blinds drawn and have the lights on at the back of the classroom rather than near the board. If the room is lit with only florescent lights and no natural light it hurts my eyes. The florescent lights are always yellowish and I find it easier with proper white light. Natural light makes things clearer.

In the Underground
When I go from light to dark or dark to light I find my vision goes white for a little bit and everything is blurry for like 20 seconds until it adjusts properly. It takes a while to get used to changing light conditions. In the Underground it is hard for me to get around because it doesn’t have good lighting. It’s particularly difficult if it is a line that’s unfamiliar to me, one I don’t normally use, and the signs giving information about stations have really bad glare so that I can’t see them unless I am standing right in front of them. As for the boards that tell you when the trains are due, I can’t see them at all because of this orange on the back. That is poor contrast and is impossible for me to read. Fortunately normally I am with other people. So it’s not always reliant on me to see where to go. But before I leave or before I use the underground I check on the internet so I know exactly where I have to go so I don’t have to rely on what I see when I am there.

Crossing roads
Crossing roads can be hard. The traffic lights are not easy to see. With buses I can’t see the numbers until they are really close. So hopefully the bus driver sees me when I put my hand out. I have a monocular but I don’t use it. I have it with me but I feel silly when people look at me. If I take out a little monocular and I am on a bus I feel silly. It’s not that I care about what people think but I find it easier to just not use it because people don’t really understand. I get a lot of people judging me why you I it. Obviously they don’t know me so they don’t understand what’s wrong with me. I get weird looks and if I don’t look like I have albinism then they are not going to think twice about it. I don’t like to put my glasses on. I don’t wear my glasses because they are too far away from my face to really help me. My contacts are too hard and they are uncomfortable. I am waiting for them to develop softer contact lenses. So obviously it doesn’t look like there is something wrong with my eyes. And I get weird looks when I squint and stuff. Also at school a lot of people come up and be like they don’t understand; if I say I have albinism they don’t know what it is. They have no idea.

What I don’t appreciate

I dyed my hair blond. I wanted something different. It’s not that I don’t want people to see me as an albino or something, it’s more I was bored with it. I do also hate the fact that when I go out and I am with people, they’ll go, “Oh look for Susan; you can see the white hair anywhere.” They say it to me without thinking: “Oh I saw your white hair; I knew everyone must have been over here then...” It does bother me sometimes. Obviously you’ll look for something that’s prominent but… After all people dye their hair so why not? I dye my eyebrows and eyelashes. I always wear mascara because my eyelashes are so blond it looks weird. People say it as a joke, “Oh Susan from over here it looks like you have no eyebrows!” I do not appreciate that at all!