blondewhimsy

looking at life through a platinum blonde fringe.

Are y’all related?

Are y’all related?

We recently attended a conference in the US (NOAH conference) and conversations led to comments and questions passers by ask.

“Is that your natural hair colour?”

“People would pay heaps of money for that hair”

“My kids were that blonde too, he’ll grow out of it”

“Why have you put sunglasses on your baby?”

We agreed that one of the most annoying of these is when we’re with another PWA (person with albinism) and someone asks “Are you related?”

Often people just say yes because it’s easier.

I actually experienced this twice in one week, both times with the same friend. One person just asked if we were related, the other referred to my (11 year younger) friend as my daughter.

The same thing came up – why do people only look at our hair? Why can’t they see past that one common factor?

If you approached a table of numerous Chinese people together, would you simply assume they are family? If you saw a group of Africans together, are they friends or a large family? We aren’t any different, although I admit it’s more unusual to see a group of people with albinism. And while I don’t expect people to look closely enough to see our differences and similarities, it seems people tend to make quick assumptions.

Albinism is only one small part of who we are. we also carry the genetic makeup of our family, so noses, ears, height, weight, curly or straight hair, loud, quiet, jokey or serious…. is all uniquely our own. So while I have the same hair colour as my friend, she actually looks nothing like me. Our children would never mistake us. But still it is an assumption.

I believe it relates to education. Many times I have heard “wow there are chinese albinos!”, or similar. The understanding that albinism is genetic not racial is one that people don’t instantly “get”. And that’s not their fault. With only 1 in 17 000 people in the western world having albinism, it’s not very common. Even medical specialists can go their whole career and only meet (maybe) one in their time.

Just as other genetic hiccups occur worldwide, albinism does too. As soon as two parents with the same recessive gene create a child, there is a one in four chance the child will have albinism. And given that we all carry about 20-30 recessive genes, (1) and 1 in 70 carry the gene for albinism (2)…… it’s interesting odds.

With so many people bleaching or lightening their hair, and people buying the stereotype of albinism – that of red eyes, straw like white hair and tissue-like skin,sometimes people with the condition aren’t even acknowledged! (For example, most people tell me they thought I was just really blonde. The word albino doesn’t always register with them because I ‘don’t have red eyes’.)

Families having one or two children each for a couple of generations can unknowingly mask the presence of albinism as well. Suddenly, a child is born with albinism and both parents look at each other and say “well it’s not from MY side of the family”. Actually, it is. Recessive genes need a copy from both parents to become active. The one in four chance means it can skip two children (or appear in two children!) for a couple of generations, coming as a surprise. There may be a vague recollection from a relative or it may be obvious that there is a connection. Either way, there is your beautiful child with platinum hair.

As the world becomes smaller – or more accessible – people with albinism reach out to each other and connect and share stories. There are facebook pages, email / chat groups and conferences. Connecting with other people who have been through the same as you – the questions, the teasing and bullying, the misunderstanding, the frustration of low vision – is a link that is strongly forged; in some cases almost instantly. Meeting and reuniting with these people from all walks of life and all locations of the world is a joy and a frustration. It’s a bittersweet time of catching up, talking about new technologies and research, finding out about colour schemes that work and whose life has changed and how – it’s kind of a great big family reunion. A non-blood family reunion. Because, you know, we’re not all related.

(1) http://healthland.time.com/2012/06/06/an-unborn-baby-gets-its-dna-sequenced-is-it-cause-for-celebration-or-alarm/

(accessed July 2012)

(2) http://anthro.palomar.edu/synthetic/sample.htm       (accessed July 2012)

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I don’t see things the way you do

Full disclaimer: I have good vision for someone with albinism. Corrected – ie with glasses – it’s 15/60, which means something “normally sighted people” can see clearly from standing 60 metres away, I see only from 15 metres away. (So I need to be closer)
Most people with albinism have a best corrected vision of 6/60. Note that’s the very best score possible if it’s corrected. Usually visual acuity (readings) in albinism are much lower. The US equivalent is 20/200, the difference is purely metric – measuring in metres vs feet. While I do suffer from glare issues and vision issues, and while a lot of what follows pertains to me, (mostly without glasses on!) my issues aren’t to the extent of my brothers and sisters with the full tote “legally blind” vision. My visual acuity allows me to drive, something the vast majority of people with albinism are unable to do, so I am blessed with what I have. This is a privilege I take very responsibly. Therefore, the following is formed only from my thoughts and understandings, and is in no way meant to act as a voice for every person with albinism.  A lot of this information has been gleaned from conversations, emails and blogs, but remember as well as there being different types of albinism which affect people in varying ways, each person is unique with their own genetic makeup, personality, situation and location to mix in.
 
I have albinism and I’m not afraid to use it.
 
Having this condition means more than that I have whiter hair than your granny and pale skin tinged faintly pink or yellow.
 
It means I can’t see very well. I can see, I just can’t see well.
 

Let me try to explain.

 
What I see isn’t blurry per se, but it’s indistinct. I’ve heard it compared to pixels in a digitised picture. You see clear pixellation, I see an image that has the pixels muted. Like when you enlarge and enlarge a digital image and the pixels (squares) make the picture look unfocused Or seeing a small photo in the paper of someone and trying to read the saying on their t-shirt.
 
 
So this vision can mean a lot of things. It’s very hard to explain my vision because I’m used to my way of looking and can’t even imagine yours

 Light can affect my vision. If it’s bright out, I can’t see because of the glare. Even with my prescription wrap around polarising sunglasses and a wide brimmed hat – giving me the best chance – I still won’t see well.  I have no pigment. That involves the back of my eye as well. So where yours is dark, and absorbs light coming in through your iris, mine is white, reflecting light back from there to the front of my eye. This can physically hurt as well as just being uncomfortably bright.  If the light in a room is bright it can affect my vision as well. I might ask to have blinds and curtains closed, or to have a lamp on instead of an overhead light. I’m not being precious; honestly, I’m trying to ease the burden on my brain to help me see
 
·           It means if you wave to me and I don’t respond, either a. I am purely and simply distracted, a non-albinism thing, b. I didn’t see your slight hand movement, c. You had light behind you or d. I didn’t recognise you. This can complicate things because I have ‘ignored’ people I know well simply because I didn’t recognise them. If they speak and I know their voice I know who they are. If I have seen them earlier and noticed their clothes, or just recognise their clothes, I’m okay. Once you get closer I may act surprised to see you and then say hello enthusiastically. This will no doubt confuse you! Sorry about that.
 
·           If you wave to me from your car, I can’t see you through the glass windows, tinted or not. I just can’t see you. If I recognise your car it helps. If you speak it helps. If you toot your horn it doesn’t. If you’re driving and I’m in a car as well, forget it, that’s two lots of windows I’d have to see through.
 
·           I don’t always see your facial expressions. Visual cues don’t work for me, so if I miss your wink, eye roll, head point at someone or slight shoulder shrug, I’m not ignoring your gesture, I didn’t see it. Across a table, at a dinner or a meeting, I won’t always know if you’re smiling or snarling, your lips are just a line to me, if I can even see that. (so I’ve cut “spy” out of my career possibilities)
 
·           I can’t see your computer screen. I can’t read your emails; I can’t see the web page you’re on. So if you think I’m reading over your shoulder, relax, I’m not. I might be looking at the words on the page wondering how you can see small print and I can’t… It’s mostly just black marks on white to me. Every now and then I might make out a word if I concentrate. That doesn’t mean I’m lying to you, it means my brain has learnt to make pictures out of the shape of a word and I recognise it.
 
For example the word “little” has the following letters:  tall short tall tall tall short. It also looks like latte, litter and kitten, amongst other words. If I see it with another word I recognise the shape of, I can start to discern which word it is.
I also learn to ‘cheat’. I know which words happen when, so if you’re in a computer program I know, I might guess that the shape of the word says ‘print’ … Or I might take a guess at a word that might logically be there… either way, I’m faking it.
 
If however you want me to read what you are, you could have your screen enlarged (Ctrl and +) or change to a larger font. Around size 18 as a minimum works best for me.
 
·           When you point things out to me I will likely miss them. A particular type of bird flying past? By the time I’ve worked out where to look, it’s gone. A squirrel in a tree? Unless it’s very still and I’m very close, it blends in. A bright red bird in green grass? I’ll see the red and be thankful. A flower? Let me get in close, or hold it out for me. If I have the time to get my monocular out and focus, by all means show me and let me delight in it. Or take a digital photo and enlarge it on the screen to show me. I’m not really sad that I can’t see, I don’t know that I’m missing seeing it. You might well be sad for me, but honestly, it’s not a biggie. Your being upset for me is likely to upset me more.
 
·           If we’re eating fast food, I can’t read the menu on the wall. I can’t see prices or descriptions. I can see the big pictures of the food but that, surprisingly, might not be an accurate indication of what I’m ordering! – and I don’t always get enough information from the picture. I might ask you a lot of questions about things that are clear to you. Trust me. If I could read it, I would because I’d be so thrilled.

 

·           In conferences and talks I’ll want to sit in the very front row. If you’re a back row person, let me know so I know I’ll be alone at the front. It isn’t a guarantee I can see the presenter’s face, their PowerPoint or their props, but it’s a better chance than not trying it.

 

·           At concerts and performances, if I’m not in the first few rows, I may not enjoy it so much. I’ll probably need my monocular as well. If that’s an issue, sorry, but I’ll want my money’s worth as well. I can enjoy the music and the atmosphere but if I want to see facial expressions or makeup, or someone I know is in the cast, I want to see them up close. From the photos below, I can see the lovely Lior, just not as clearly as my camera can! I was about six rows back, and I manipulated the image to show more light glare and less distinction in his face.
 
 ImageImage
 
 
·           Sports games require extra work. My monocular is a necessity. Unless the person I’m following on the field has something distinct about them (like yellow shoes) I won’t be able to pick them out. School sports days, I’ll want my kids wearing something I can see so I can watch them.
 
 
Having said all this though, I CAN see. I’m not blind. The term “legally blind” applies to most people with albinism, but that’s for, well, legal stuff and is a benchmark for claiming benefits and maybe assistance for kids in school, not really a description of the vision.
 
I bring things close to my face to see the detail. If it’s a scarf or an ornament, I want to see it properly. If it’s a watch or a computer part, or a gadget, I may need to get close to see what I need to see. Remember, what you see at 60 I see at 15. So I see it, I just need it closer to see it as well as you do.
 
I have strabismus which means one of my eyes might behave like (as a friend says) the eye of Mad Eye Moody from Harry Potter. It will randomly roll in another direction. It’s not deliberate. I can’t make it happen and I can’t stop it. One of my eyes is likely stronger than the other, and the weaker eye might misbehave while I’m using the good one. It’ll likely be worse when I’m stressed or tired, but it’ll be there.
 
I also have nystagmus. It happens in varying degrees to everyone with albinism. It’s an involuntary shake or jerkiness of my eyes. It does affect what I look at but it doesn’t affect me looking if that makes sense. Again it’ll be worse when I’m stressed or tired but it’ll be there and it might freak you out a bit, but it doesn’t hurt and it doesn’t bother me.
 
As I mentioned earlier, glare affects my vision. So if we’re outside I’ll put on my sunglasses and a hat even if it doesn’t seem like I need them. Not to be a poser, or for sympathy, it’s for our safety. I don’t want to trip on things I can’t see or walk into poles or other people any more than I need to, and glare can create a complete washout of the area a few feet in front of me. If you’re sitting in front of a window or opening which is lit, you may actually just appear in silhouette to me. So I won’t see your facial expressions.
 
I’ll likely surprise you when I do see things too. I’ll spot an unusual leaf or shell and you’ll start to think I’m making up this vision thing. It’s most likely that it had contrast with something else. Maybe it cast a shadow or it is a different colour to its surroundings. Little people with albinism can see one ‘100s & 1000s’ on the floor… But when questioned, parents often say it was pink or blue on a white floor or highchair tray, or white or yellow on a dark floor. So it’s not a miraculous improvement, it’s just a nice change.
 
I may or may not wear glasses. I know that glasses help people with low vision or vision issues but in my case it’s different. The melanin which is needed to create pigment for hair and skin is missing in my genetic makeup, giving me my pale appearance. It’s also important in the development of vision in utero, it’s needed in the visual pathways… And it’s not there, so nothing can fix what isn’t there. I know you’ll get cross and tell me to get my eyes checked; you just have to trust me that some people with albinism who wear glasses say it just make it less tiresome to look. The muscles don’t have to work so hard. But it doesn’t help the majority of people with albinism SEE. I’ve asked countless doctors optometrists, and ophthalmologists. Other than that I’ve spoken to heaps of people with albinism and that’s what they’ve found. If I could make it better, I would.
 
But you know what? I don’t treat this as a disability. It might be registered as one, but I see it as a difference. Not seeing well means I have honed other senses. I’ve learnt to recognise people by their footfall, by their smell or their voice before I see their face. This allows me to read their mood better than other people with low social skills or ‘attitudes’. I get to “see” people in a way you may not. I get to see their patience, their understanding and their tolerance – or lack thereof. I learn a different level of trust with people, and I know that my difference makes me who I am. It has shaped me in ways I can’t even understand, and makes me – not one in a million – but one in seventeen thousand people… and that’s okay.
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