Character with Albinism

DavidZahir · Sep 4, 2009

Since the matter has come up, I want to double-check some details about a character of mine who has albinism. I'm nailing down lots of little details as the outline is finished and before I go into the writing proper.

We'll call him Robert.

Robert is in his early twenties, and probably has Oculocutaneous albinism type 2, which essentially means he has a tiny amount of pigment. Physically, Robert has enough pigment in his hair to make him a platinum blond (think Gwen Stefani or Christian Aguilera) and his eyes are such a pale blue they can seem violet. He is much, much paler than the norm. His skin is, for all practical purposes, white (although of course his lips, nipples, etc. are more pinkish).

He has poor vision, being far-sighted and with a mild astigmatism as well as being photosensitive (i.e. he finds direct bright light somewhat painful). Thus he wears tinted prescription eyeglasses. As far as such things go, he is actually somewhat lucky in that his eyesight isn't much worse. Or so it seems to me.

I'm not sure whether his astigmatism might be cured with laser surgery or not.

But physically he is also quite strong and healthy otherwise. He is thin and muscular--what most would call "wiry". Since childhood he has been an avid swimmer and tree-climber. His main area of study is the violin and he plays very well (his ambition is to be First Violin in a major orchestra).

I should probably mention his family is rich--not Kennedy-rich or Rockefeller-rich but wealthy enough to have owned a mansion for several generations in Marin County. This has a lot to do with how his personality developed--that and the specific dynamics of his family. He learned to act like a prince, and coupled with his startling appearance and intelligence, his entry into school proved traumatic (a rich, smart, arrogant albino in elementary school has a target on his back as far as I'm concerned--sad, but true). After a nasty incident, his father insisted on (top-of-the-line) home schooling until Robert qualified for college.

(Said incident is an extrapolation that happened to me as a child--but made much worse.)

Simply put, Robert has an attitude. He isn't cruel but he does not suffer fools gladly and in his eyes most people are fools. His favorite clothes are dark gray and purple, despite (or because) that highlights his own exotic appearance. So he throws his looks in others' faces--as a defense more than anything else. Nothing earns his respect (and a little irritation) more than to be unfazed by these antics. Part of this is an emotional belief that of his father's three sons, he is the least favorite (he isn't quite mature enough that the other two think precisely the same thing about themselves--and that the truth is far more complex than that). Balancing the attitude is a sense of style--he can be quite gallant, for example.

He's not terribly self-aware, and has only vaguely begun to suspect that some women find him very attractive (his features resemble those of Daniel Radcliffe).

My concern is that Robert not come across as a stereotype, and that his physical condition (i.e. albinism) be accurate (or at least perfectly within the range of possible).

For the record, his albinism is the result of the fact his parents were fourth cousins, so the recessive genes involved managed to match up.

Thanks in advance

CaroGirl · Sep 4, 2009

He doesn't sound stereotypical to me. The only albino I knew was quite self-conscious about his appearance. His eyesight was terrible. So bad, he didn't even bother to wear glasses. He used a magnifying glass to read. He was a pure albino, no pigment, and his eyes were red.

Be careful in making him a swimmer. Without pigment, albino skin is vulnerable to devastating sunburn. I'd make sure he swims indoors only. You also might want to make sure albino skin isn't typically oversensitive to chemicals such as chlorine.

jeseymour · Sep 4, 2009

I can only give you my experience, which is as the mother of a child with albinism.

But physically he is also quite strong and healthy otherwise. He is thin and muscular--what most would call "wiry". Since childhood he has been an avid swimmer and tree-climber.

This I find hard to believe, based on our experiences.

My daughter was born legally blind, although we didn't know it. When she was four months old, she was lagging way behind in development compared to my older daughter, no smiling, no eye contact. I asked the doctor about it, he shrugged it off. At six months she had what we thought was a seizure, it may not have been a seizure, but the visit to the emergency room put us in contact with a Neurologist and then an Ophthalmologist, and things progressed from there to Boston Children's Hospital where we got the diagnosis of Oculocutaneous Albinism. At six months her vision was 20/300. She lagged behind in all physical milestones, and actually started physical therapy at six months through Head Start, along with vision services through Perkins school for the blind. When she turned three, she moved from Head Start to preschool, where she was on an IEP and continued to receive physical therapy and vision services. During this time, she started to develop pigment. We met Dr. Richard King, who is leading researcher in the field of Albinism, and he said she has a very rare form of Albinism in that she is developing pigment. In the past eleven years, she has moved off her IEP and no longer wears glasses (her vision is now 20/60 and not correctable - most vision issues caused by albinism are not correctable.) However, she is not what I would call a great athlete. She has serious hand-eye coordination issues, and although her trunk strength has improved, she still has balance issues. She did try to play ball sports for a long time, but finally, at age 14, she's grown up enough to admit that it's just no fun getting hit in the face with the ball all the time. It was painful to watch her playing soccer. She does still have Nystgamus, her eyes move involuntarily as they try to focus. Most people with albinism have nystagmus, many of them use a null point, tilting the head to the side to stop the wiggling. It's important to note that the vision problems associated with the albinism are not correctable. Most people with albinism who wear glasses due so to correct other vision issues. This is because it's not the shape of the eye that's messed up, it's the wiring from the eye to the brain. Also something about the rods and cones, I never really understood it. Magnifiers can help. We have a huge collection of magnifying glasses, having bought every interesting one we saw in an attempt to get my daughter to use one.

So for a character with albinism to be athletic does not fit to me. I can't imagine him climbing trees. Swimming maybe, although my daughter is not good at swimming. She's just not terribly coordinated.

Oh, and when we were going through genetic counseling, my husband and I were asked repeatedly if we are related. We're not.

I'm English/Irish and he's English/Italian.

Oh - and one other interesting tidbit - most people with vision problems make up for it with stronger other senses. My daughter has good hearing and notices noises other people miss. She is also very vocal, has been since she was little. She loves to talk. She wants to be an actress.

Hope this helps. Feel free to pm me for further details.

DavidZahir · Sep 4, 2009

Everything I've read or seen about albinism--including interviews with those who have the condition--indicates that the degree of visual impairment varies from individual to individual. Thus while many, perhaps most, may be legally blind it does not follow all such are.

Robert wears glasses for his far-sightedness and his astigmatism, which are problems with the surface of the eye and thus are correctable. Problems with the nervous system regarding visual perception are another matter.

I don't doubt for one second Robert finds it difficult to climb, especially at first. My idea is that he has forced himself and learned how to do it anyway. Keep in mind my premise is that his visual problems are as minor as possible given his albinism. With those factors in mind, is this a within the realm of realistic?

Edited to add...
According to some sources I just found, it seems the very best vision Robert might expect to have (apart from the problems with the surface of his eyes) would be 20/50. So I feel I have that option at least.

BigWords · Sep 4, 2009

There has been a tendency in recent years to use albinos as the villains in novels, especially the nasty, trashy kind of novels (*cough* Dan Brown *cough*), so keep from painting the character in an unnecessarily negative light if that is where you were going with the story.

DavidZahir · Sep 6, 2009

Oh, that tendency goes back more than a few years. Case in point--The Eiger Sanction.

But while Robert has his less-than-pleasant traits, he is not a negative person nor (I hope) some of kind of caricature. At least, my hope is that the above character description gives some hint as to his personality and that isn't one of an evil mastermind or desperately twisted outsider.

Brutal Mustang · Sep 6, 2009

DavidZahir said:
Robert is in his early twenties, and probably has Oculocutaneous albinism type 2, which essentially means he has a tiny amount of pigment. Physically, Robert has enough pigment in his hair to make him a platinum blond (think Gwen Stefani or Christian Aguilera) and his eyes are such a pale blue they can seem violet. He is much, much paler than the norm. His skin is, for all practical purposes, white (although of course his lips, nipples, etc. are more pinkish).

LOL! Sounds like the description of a character in my WIP. Only he's a sweet guy, and one of courageous ones in my story. And it's sci fi, so many of the physical problems due to albinism aren't an issue (because of advanced medicine).

Character with Albinism

DavidZahir

Malkavian Primogen

CaroGirl

Living the dream

jeseymour

DavidZahir

Malkavian Primogen

BigWords

Geekzilla

DavidZahir

Malkavian Primogen

Brutal Mustang

Loves interplanetary chaos.