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Old 11-14-2006, 09:07 AM   #1
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Jump on the bandwagon and ask the vision impaired albino

OK, I normally don't like to jump on thread bandwagons (though I think I once did one of these "ask ..." threads ages ago with a different angle), but the other two threads currently on the first page on similar topics, hearing impairment and autism, look as if they have the potential for some good discussion and improving awareness, so I thought I'd make one of my own threads. I am especially motivated by the fact that experiences over the last few weeks have really made me feel as if people just don't give any thought to albinos nor much of a thought to the seriously vision impaired - I feel that there is this attitude that if I have my glasses on, I must be quite alright, which is just complete bollocks.

For some context to guide questions, and to pre-empt the "what vision impairment do you have?" question: my vision difficulties are primarily related to my albinism. I'm not legally blind but I can't drive either. I have nystagmus (largely under control), astigmatism, and some other stuff. What a normal person can see from six metres, I can see from just one, and while I don't see things as blurry without my glasses, a good way to describe it would be that I see things at a lower resolution. Oh, and I've never met anyone with thicker glasses than my reading pair.

Anyway. I shouldn't make too wordy a first post or that will kill the questions! So ask away.

PS I'd like to ask my own question - any other albinos out there? I've never actually met (either on- or offline) another human albino.
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"Who buys U2 records anyway? It's just music for plumbers and bricklayers. Bono, what a slob. You'd think with all that climbing about he does, he'd look real fit and that. But he's real fat, y'know. Reminds me of a soddin' mountain goat."
"And as for Bono, he needs a colostomy bag for his mouth."

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Old 11-14-2006, 09:28 AM   #2
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is there a history of albinism in your family?
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Old 11-14-2006, 09:31 AM   #3
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I did have an acquaintance in grad school who was an albino, not someone I knew well though. Like you, he was quite severely vision impaired. I gather from a brief conversation I had with him once that this is characteristically associated with albinism, which was news to me--I'd always previously assumed it to be nothing more than a pigmentation anomaly. Are there other syndromes associated with albinism as well? What precisely causes it, and why does it affect anything beyond skin color?

And I'll ask you the same question I asked Mr Green Eyes--how has this affected your needs in various commonplace environments like the classroom and/or workplace? Also, I'm guessing you probably have to be extra careful with sun exposure--does albinism strongly increase your risk of skin cancer or serious sunburn?
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Old 11-14-2006, 10:46 AM   #4
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I went to elementary school/junior high with a girl who was albino, she was so pretty

I hope it's ok to ask this honest question, no offense intended

Do you feel as if people stare at you too much because of your looks? If so, how much does it bug you?
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Old 11-15-2006, 06:30 AM   #5
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Quote:
Originally posted by U2Man
is there a history of albinism in your family?
None at all, though I do have a great-uncle who is quite pale and often mistaken for an albino.

Quote:
Originally posted by yolland
I gather from a brief conversation I had with him once that this is characteristically associated with albinism, which was news to me--I'd always previously assumed it to be nothing more than a pigmentation anomaly. Are there other syndromes associated with albinism as well? What precisely causes it, and why does it affect anything beyond skin color?
Albinism and vision impairment go hand-in-hand. There are actually forms of albinism that only affect the vision and not the skin colouring (though I have the pale skin). Albinism affects the development of the retina and the nerve connections between the eyes and brain.

Besides the vision issues, I don't believe any other syndromes accompany albinism. The main medical worry for any albino is skin cancer and other skin issues related to the lack of pigment.

Quote:
And I'll ask you the same question I asked Mr Green Eyes--how has this affected your needs in various commonplace environments like the classroom and/or workplace?
Well, I hate going anywhere unaccompanied if I don't already know my way around. So many places are just not designed with the vision impaired in mind - I'm sick of being unable to read signs. A good example is fast food restaurants with menus behind the counter: I can't read them whatsoever. So that has reduced my mobility somewhat.

In high school, I became a bit tired of people making an issue over my vision and albinism. I very much appreciate their care and thoughtfulness, but the constant "André, is this alright?", "André, can you see?", "André, is it shady enough?" sort of stuff ultimately led me to play down my needs at university in an attempt to be independent. It has largely worked. Whenever I find myself in a position of difficulty, I seek help - my mother made sure I was assertive like that from a young age. As long as I seat myself away from any sunlight, close to anything that needs to be read or watched, and have my monocular and glasses, I tend to be fine. My academic achievement certainly hasn't been hindered by either my albinism or vision - I currently have a GPA of 7 (though I suspect it'll slip down closer to 6.5 after this semester's results). However, I have been very reluctant to seek employment and have only held brief jobs.

To be honest though, albinism has actually had some considerable positives, especially at high school. I figure that I should make the best of a bad situation, and it certainly got me out of a lot of high school events I did not wish to do, such as inter-house sporting carnivals, compulsory Friday sport, and even fire drills (our gathering spot was in the direct sun on the oval, so I was allowed to go wherever I felt was shady enough)!

Plus, I like to make humour out of it. Whenever anyone complains about their skin being pale or being unable to get a good tan, I just tell them to stand beside me. I make anyone look dark in comparison!

Quote:
Also, I'm guessing you probably have to be extra careful with sun exposure--does albinism strongly increase your risk of skin cancer or serious sunburn?
Oh yes, absolutely. I can tell some horror stories about sunburn. I'll spare them now, but one essentially left me in a cold bath for a week, while another resulted in me having to wear bandages on my arms for a couple of weeks and the burn itself did not fade for months - a year later, I could still show discoloured patches on my arm to a teacher to convince him that I should not participate in some outdoor event. Luckily, both arms have now returned to normal, some 4.5 years later.

I always have to carry sunblock with me when I know I'll be in the sun for a while, and I've had to take umbrellas with me to block the sun when queuing for U2. I forgot to take one for the concert in Brisbane and security's response really bothered me. For some daft reason, they decided to make us queue in the direct Queensland sun with no shade provisions at all (which just made things uncomfortable for everyone), and when I went to security, they initially refused to help me and took the attitude that I was trying to con them into giving me some special preferential treatment that I didn't deserve. Now, I can understand many medical conditions can be easily faked, but my albinism is pretty bloody self-evident just by looking at me! So I tracked down some doctors and they managed to persuade security that I had a legitimate condition (yes, persuade; they initially tried to fob off the medicos too) and that I should be permitted to sit outside the line in the shade. Anyway, that's my disgruntled rant.

Quote:
Originally posted by MrsSpringsteen
I hope it's ok to ask this honest question, no offense intended

Do you feel as if people stare at you too much because of your looks? If so, how much does it bug you?
No offence taken whatsoever. With my vision, I'm obliviously unaware of anyone staring at me. Occasionally, my friends/family have pointed out someone staring, but it's usually just been little children and that doesn't bother me at all. Little kids stare at anything and I'll just smile at them.

I think nowadays, people notice me more because of my hairstyle than the actual albinism. Because I've tried to cut costs, I haven't had my hair cut much regularly, which has meant it has grown into a mini-afro quite reminiscient of the one Adam Clayton has on the cover of October. I can't decide if it looks cool or abso-bloody-lutely ridiculous!
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Ian McCulloch the U2 fan:
"Who buys U2 records anyway? It's just music for plumbers and bricklayers. Bono, what a slob. You'd think with all that climbing about he does, he'd look real fit and that. But he's real fat, y'know. Reminds me of a soddin' mountain goat."
"And as for Bono, he needs a colostomy bag for his mouth."

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Old 11-15-2006, 06:45 AM   #6
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no questions yet, but this is very intersting -- you write beautifullly axver.
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Old 11-15-2006, 06:53 AM   #7
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Quote:
Originally posted by Irvine511
no questions yet, but this is very intersting -- you write beautifullly axver.
Thank you!

Though I do have a tendency to ramble at considerable length.
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Ian McCulloch the U2 fan:
"Who buys U2 records anyway? It's just music for plumbers and bricklayers. Bono, what a slob. You'd think with all that climbing about he does, he'd look real fit and that. But he's real fat, y'know. Reminds me of a soddin' mountain goat."
"And as for Bono, he needs a colostomy bag for his mouth."

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Old 11-15-2006, 06:58 AM   #8
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Quote:
Originally posted by Axver



Though I do have a tendency to ramble at considerable length.
Me too!

I'm learning a lot, Axver. Thanks for sharing.

I was traveling in South Korea earlier this year and I saw a Korean albino girl on the train. She was holding her cell phone really close to her face while she was texting, and I thought it was because she was embarrassed about people staring (like my students, who despite my admonitions, gaped openly), but now I'm thinking perhaps it was the vision impairment?
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Old 11-15-2006, 07:18 AM   #9
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Quote:
Originally posted by maycocksean
Me too!
Maybe so, but your posts are insightful and make for great reading.

Quote:
Originally posted by maycocksean
I was traveling in South Korea earlier this year and I saw a Korean albino girl on the train. She was holding her cell phone really close to her face while she was texting, and I thought it was because she was embarrassed about people staring (like my students, who despite my admonitions, gaped openly), but now I'm thinking perhaps it was the vision impairment?
I'd be willing to guess that it was highly likely due to the vision impairment. People always remark on how close I hold books to read and how close I sit to the TV or computer. Mobile phones can be particularly tough to see! The newer models with clearer, more vivid screens don't help much either because the size is still so small.
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Ian McCulloch the U2 fan:
"Who buys U2 records anyway? It's just music for plumbers and bricklayers. Bono, what a slob. You'd think with all that climbing about he does, he'd look real fit and that. But he's real fat, y'know. Reminds me of a soddin' mountain goat."
"And as for Bono, he needs a colostomy bag for his mouth."

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Old 11-15-2006, 10:48 AM   #10
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Do you ever have any problem seeing the computer? Do you have to worry about being covered up in the summertime so you don't burn? What color are your eyes? Somebody once told me human Alibinos have pink eyes like rabbit albinos but I think they must have blue because that's what the rock star Edgar Winter had and he is abino.
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Old 11-15-2006, 06:10 PM   #11
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Well, when you made the remark about being albino in one of Tour Discussion threads, I thought you were joking about being a New Zealander living in Queensland. That'll learn me!

Quote:
Originally posted by Axver
I think nowadays, people notice me more because of my hairstyle than the actual albinism. Because I've tried to cut costs, I haven't had my hair cut much regularly, which has meant it has grown into a mini-afro quite reminiscient of the one Adam Clayton has on the cover of October. I can't decide if it looks cool or abso-bloody-lutely ridiculous!
Just stay away from the October-era headbands!
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Old 11-15-2006, 06:32 PM   #12
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Quote:
Originally posted by Axver



Though I do have a tendency to ramble at considerable length. wink:
Me too!


When I was living in Ghana there was an albino teenager in the town. Now we got enough attention as it was for being white, I can't imagine what it must have been like for that guy.
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Old 11-15-2006, 07:24 PM   #13
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Quote:
Originally posted by Butterscotch
Do you ever have any problem seeing the computer? Do you have to worry about being covered up in the summertime so you don't burn? What color are your eyes? Somebody once told me human Alibinos have pink eyes like rabbit albinos but I think they must have blue because that's what the rock star Edgar Winter had and he is abino.
1. Definitely. I have my computer set up at home so that I don't have too many hassles, assuming that what I'm reading is clear, but when I have to use other computers, I often find myself having difficulties. I especially dislike using laptops.
2. Oh, for sure. Not just summer either - it's year-round. I generally try to avoid doing anything that requires prolonged exposure to the sun, but that can be quite difficult when the thing I want to do is play cricket! So I have a good supply of thin long-sleeved shirts and trousers for summer weather.
3. Some human albinos have pink or red eyes, but it's not as common as people think. I have very light blue eyes.

Quote:
Originally posted by blueeyedgirl
Well, when you made the remark about being albino in one of Tour Discussion threads, I thought you were joking about being a New Zealander living in Queensland. That'll learn me!


Quote:
Just stay away from the October-era headbands!
Lucky I dislike headbands, eh?
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Ian McCulloch the U2 fan:
"Who buys U2 records anyway? It's just music for plumbers and bricklayers. Bono, what a slob. You'd think with all that climbing about he does, he'd look real fit and that. But he's real fat, y'know. Reminds me of a soddin' mountain goat."
"And as for Bono, he needs a colostomy bag for his mouth."

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Old 11-15-2006, 09:09 PM   #14
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This is very interesting, but I have to confess I've been chatting with you off and on via Interference and LiveJournal for at least a year, and have even seen a picture of you, and had no idea you were an albino.



But seriously, I hardly know anything about the condition, so very interesting!
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Old 11-15-2006, 10:30 PM   #15
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were kids mean to you at school about it?
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