NOAH AOC

I suppose that my biggest problem is vision- especially when it's really bright outside. Being older, my eyesight is changing, making keeping up my prescriptions a major pain.

Keeping my hair from looking dingy is another problem. My eyebrows are white, but my head-hair is gold, with white roots. I've thought about trying 'sun-in' to see if that would fix it, but I don't like messing with my hair too much. I do use some shampoo that gets chlorine out of hair, but haven't seen it for a while at the beauty store.

I have tyrosene-positive albinism, which means that my skin has gained a bit of color as I've gotten older. But my 'tan' is everyone else's winter skin. I'm just glad that Mom insisted that I wear sunscreen and a hat when I was small. My skin is in pretty good shape because of that.  

 

 

Hi,

I am writing a research paper on the negative portrayal of albinism in literature and in the cinema. Your post caught my attention because it seems that you have also noticed this trend.

The use of albinistic characteristics to describe/illustrate an evil character is reffered to as "evil albinism" or albino bias.

If anyone has further information or sources on evil albinism, it would be greatly appreciated.

My main reason for posting here is to ask if anyone with albinism (or who has a close relation to someone with albinism) has experienced the effects of evil albinism. A particular movie or book that upset you, an expierence with someone who was influenced by evil albinism in popular Western culture, etc.

Any information or input would be greatly appreciated! Even venting on the idiocy of how albinism is portrayed would be helpful; I know I am disgusted at how literature and especially Hollywood exploits albinism, I could only imagine how I would feel if I was personally affected by albinism.

By noting the misconceptions presented in evil albinism, we can stop this fatuous portrayal of albinism in popular culture.

Thanks,

Hannah

Hi Hannah

I don't know whether you came accross this link yet http://en.wikipedia.org/wiki/Albinism_in_popular_culture while reaching . I feel this link migh thave what your looking for as it regards the negativity through hollywood superstitions and myths though other cultures. 

Now to try to answer your question-- Frankly, I never felt deeply upset or angred (maybe alittle frustraited and amused) of the negative exploitation from Hiollywood or other sources, As I think of such as quite bogus

To be very blunt I feel that I probably face a double whammy of being evil or negative as I am a Muslim who wears a veil and have albinism. While at the same time I keep reminding myself that just as long as poeple see me for me, they will realize that I'm decent like most human beings are. I feel that the albinism part is more easy as hollywood exploits such as rather science fication or super naturaln I feel that someone has to be a real idiot to  think that I have suoer natural powers and so forth because of my paleness.

Well that's all of my input for now

best luck on your research

Asiya  
 

I know I'm not a tean or anything (24) but my biggest problem is not driving. Everything else with the vision is fine, ,but not beable to dive is just such a killer for me. I can't live in the places I want to live in and need to rely on poeple and public transportation...which is hardly reliable in most areas so/... so.... yeah...

~Megs 

Hello,

I have two children with albinism.  When we go swimming and their hair turns green, I have them use the Loreal Kids Swim Shampoo.  It really has worked to take away the green.  Also, my daughter has long hair, and it gets straw-like on the ends.  That shampoo really softens it, and makes it shine.  It might be worth a try for everyone.

Angie

I think my biggest problem is that I can't drive (yet anyway). The low vision doesn't really bother me, I mean, I'm 17, I'm used to it by now. I don't really know what I'm missing as far as vision goes since this is all I've ever known. I just hate not being able to just go anywhere anytime without having to depend on someone else to take me there. Me and my mom are going to ask my eye doctor what he thinks about me driving at my next appointment in July. Thanks to this web site, my family is beginning to realize that there is hope that I may eventually be able to get a drivers licence. (Thank you to all of you that have posted saying that you were able to get a license) Another thing that bothers me is not being able to stay in the sun long. I start to get a sunburn after maybe 15 or 20 minutes. This may not be that big of a deal to some of you, but I LOVE being outside. And I still do stay outside for hours at a time, I just make sure that I stay in the shade for the most part. It's mainly not being able to do things outside where there is no shade. For example, I was thinking about playing basketball for my school team next year since I'll be a senior and that would be my last chance. The problem is that my school has a rule that if you play basketball you also have to run Cross Country. I've seen pictures from our Cross Country meets and most of them are through open fields, and needless to say, I can't run 3 miles in 15 minutes. Just thought I'd share some of my thoughts on this subject. I haven't been on here in a while (my computer crashed for about 3 months and I just recently got it fixed) I'm glad to be back on again. Talk to yall soon.

Beth T.

Hi, I was just flipping through the forums when I came accross this entry.  First off you are beautiful.  I am a mother of a 8 month old girl with Oca1. I have two other girls ages 7 and 5 (normally pigmented)  I love the pic. you posted that appears to be your prom, and you may think this is corney but it was so nice to hear about you hanging with your friends.  That has been my biggest concern, being accepted in the community.  Being socially interactive with others is so much a part of growing up.  Don't worry about the driving thing, rely on others while you can.  I have heard from many that they started driving into their 20's (mid), with determination I am sure you will get there.  

 Needless to say, I was wondering what you use for sunblock when you still burn in 15 min. 

Again thanks for securing my hope.

Mom of a snow princess

My biggest problems with albinism have to be the vision thing and the sunscreen I really have problems with bright light, even on overcast days the light still hurts my eyes. I hate wearing sunscreen I guess after putting it on so much It just gets really old. The visual impairment has always made me feel different, that and the way I look of course. I have been going to the NC school for the blind and that's helped because there are other albinos there but it still sucks being an albino.

I hate two things--one is not being able to recognize people until they are close.

I also agree in that I hate how movies make albinos look like evil mutants.

When I was younger my mom bleached my green hair. Haha. I suppose that worked. Lake and river water is the worst.. eww.. who wants icky orange hair... haha.

 I think the only thing that really honestly bug me is the bad vision. not being able to have a driving license is really hard for me because I absolutely love cars and travelling. I also don't like the fact that employers over here won't give me a chance soon as they realiseI have a vision problem, and they don't even take the time for me to explain to them how I work around that and it's not really a problem they should worry about.

Living in Italy where people are naturally very dark skinned and tanned all year round, and living on a coastal destination, kind of bothers me a bit but not too bad to be honest.

Also the fact that I need to wear shades or tinted glasses almost every time I'm outside bothers me a bit. I love being in the open air and not being able to enjoy colours and details because of the "filter" is a bit upsetting.

As for the hair I do dye it just a bit, I get some brown blonde bits dyed in the area  around my neck to make it look fuller, and then I "break out" the whiteness with very light golden blonde which looks just totally natural.