Albinism Help Blog 🤍

had to put a little bit of research into it but yeah, it…doesn’t look great. her grandparents being witches is questionable, her being in the school of evil is also questionable, her having “hooded red eyes”…it kinda just reinforces everything i’ve said in the past. i don’t know what it is with story/moviemakers and insisting that all characters with albinism have to be evil and red eyed and witches (the latter is the most degrading imo because there are myths that PWAs harness magic and are witches and we actually do get hunted, disembodied and killed because of these misconceptions…so you can usually tell absolutely zero thought was put into these characters, especially when they follow the same cookie cutter caricature route as all the other albino characters.) they’re always evil, too…like idk why every damn albino character has to be described as evil, but whatever.

and yeah, i don’t know how i feel about non PWAs playing PWAs…the only time ive seen a PWA actually play a PWA was with that whitey character and he said he regretted playing that role and wondered if it would just reinforce people into thinking is okay to make fun of PWAs and call them shit like q-tip. but yeah, like non PWAs playing PWAs is always so uncomfortable, especially considering they just make us look like ghosts or freaks. like the twins from the matrix, or the albino from the princess bride, or the guy from the da vinci code whose name i’m forgetting. like if these were just average people who tried to make a character with albinism, i’d give them the benefit of the doubt but like…these are influential people and influential movies. i’ve said this a billion times, but albinism isn’t commonly known about, so when the only exposure you have to it is “the evil twins” or “the albino wolf who got hunted down and whose name translated to “evil/unwanted ghost”…it holds a sort of influence to it.

i find it especially horrific that a person with albinism was cast to play a character named whitey, and he later came out to say he was worried that people were going to think it was okay to call people with albinism such names and mistreat PWAs because the movies make it look all funny and great. it takes five minutes or do a fraction of the research hollywood people don’t do.

it just gets annoying when people talk about “albinism representation” and the only good representation comes when PWAs make it because nobody can be bothered to not be a lazy fuck and spend five seconds googling things about albinism. you see it in popular media too with OCs—i’ve seen some really popular OCs with albinism who are just red eyed evil stereotypes. why must you give your villain character albinism? what does their albinism have to do with the story outside of something you just gave them for ✨AeStHeTiCs✨? i fucking hate that people are so enamored with how PWAs look because every other part of us gets ignored unless it’s stereotype fuel.

How NOT to make a character with albinism

(by a person with albinism)

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1. Don’t give them red eyes. People with albinism don’t have red eyes.

This is a myth, we do not have red eyes. Not even animals have red eyes. The reason our eyes look red sometimes is because our eyes are translucent, and when light reflects off our eyes, the red you’re seeing is the back of our eyes, even with animals. Animals don’t have hats and sunglasses to protect their eyes, or the camera people are using flash photography, and it’s the same thing. Animals also have naturally blue eyes, it’s just more rare to see that since they don’t have access to eye protection. And if it sounds painful, it’s because it is painful. I’ll get into that later though. Our eyes are naturally more blue/grey…you could argue for purple since sometimes that’s the case depending on the lighting situation. But no people with albinism have naturally red eyes.

2. Our hair and skin aren’t perfect! They can still get damaged.

My rule of thumb is the longer the hair, the more likely it is to be damaged. Whether it’s by the sun, or by natural causes, it’s still prone to damage to the point our hair color can turn a sort of buttery color if it’s long enough. our hair grows white from the roots, but the longer it grows, the more damaged it’ll get. It’s not as big of a problem with short hair, but longer hair can pose an issue. it’s usually sort of faded from white into this buttery color—it doesn’t grow in like that. that’s from natural damage from the elements. And with skin—we can still have scars, and acne, and pimples, and moles. The only thing with moles is that instead of being brown, they’re more pink in color. But we aren’t marble statues. We’re gonna have flaws in our skin and hair. It’s possible. The only thing we can’t have are natural freckles, because those come from pigment gained in the sun.

3. Don’t give us some name pertaining to our condition…please.

God, this one’s such a nitpick and I’ve only ever seen it in movies, but when you name your character after their condition, it’s almost like you’re taking away their humanity. Examples I’ve seen were Bhoot (translates to unwanted spirit/ghost in Hindi), Whitey (twice actually…one of them was nicknamed Q-Tip...ok.), Powder (even if it was a nickname it’s still objectively bad) and, of course, “The Albino.” Because how would you know they’re albino if that wasn’t their actual name? Like it’s fine to have a character have a name meaning light, or white, or snow…as long as it has a meaning outside of their condition.

4. Don’t ignore our disabilities.

Regardless of what type of albinism you have, you’re going to have a visual impairment. You will be legally blind (20/200 vision or lower—20/200 basically means that i would need to be 20 feet away from something in order to see something someone with perfect vision could see at 200 feet). There’s a varying degree in how bad one’s vision is, but it’s never going to be above that 20/200 mark—not uncorrected at least. And even then it’s impossible to get it to 20/20. Personally, the closest I’ve gotten with double lensed, super prismatic glasses was 20/180, and that was pushing it. Same thing with the photophobia—photophobia doesn’t mean we’re all vampires who are going to explode when exposed to sunlight, but we’re also not exactly safe in the sun either. We need a hat and/or sunglasses, and sunscreen, even in the winter. I think the longest I’ve been in the sun without burning (and without sunscreen) was fifteen minutes, for reference. We don’t have the pigment in our bodies to protect us from the sun like a non PWA does. When you erase the disability part, you cross that line between ableism, and into fetishism. If you don’t want to put the effort into researching the disability aspect, don’t give that character albinism. You have no right to cherry pick what you do and don’t like about this condition. At some point, it boils down to laziness and an unwillingness to put even an ounce of thought into what you’re portraying.

5. People with albinism can still work around their disability.

Yes, being visually impaired makes life difficult, and I’m willing to give some grace here because people who aren’t legally blind don’t know what it’s like to be legally blind, but it’s not too hard to figure out solutions to a problem. I’ve never known life without a visual impairment—no person with albinism has, so thinking of ways to overcome that sort of just comes naturally. For example, I used to work as a cashier, and on the rare occasion people paid with cash, it took me quite a while to count out change because it’s hard to see the numbers on the dollar bills, but I learned pretty quickly that $1 bills were light green $5 bills had a purple tint, $10 bills had an orange tint, $20 bills were similar to $1 bills but more yellow…etc. Or when I was first learning to cook and do laundry on my own, I had to buy large print measuring cups, or I’d mark the ones I already had with a sharpie/bold label. Same thing with the cup you put detergent in. It’s not impossible, really. Or if I’m filling a cup of water I usually have to just put my finger along the edge so I can feel when it’s full. Little things like that. You can work around it if you find the right ways to.

6. Don’t ignore other eye issues: Exotropia and Nystagmus

These are often overlooked, but our eye muscles are also incredibly weak, in the way a non PWA’s eyes aren’t. So, many of us have Exotropia or Nystagmus. Exotropia is basically just when one eye drifts out to the side…it can kinda make it look like you’re looking in two different ways. With me, it’s especially prevalent in photos (mostly cause the flash aggravates it), but there are fixes. There’s a surgery that could work (though it’s rare it does), or you can wear an eye patch, I guess. You don’t have to though! It’s a personal thing. If your character would be fine with their exotropia, cool! If not, those are some fixes. Nystagmus is more commonly heard of I think—the way it was explained to me when I was maybe 5 and the way I explain it to people is that it’s also called “dancing eye syndrome”—basically it just means our eyes bounce around from left to right. It actually does increase when we’re tired, or sick, or when eye fatigue is getting bad…it slows down when we’re wearing prescription glasses or contacts. Allegedly it also completely stops when you get drunk, and I wasn’t a witness to that…so. When our eyes mive randomly, it’s basically just muscle spasms. IMy vision moves with my eyes with neither my exotropia, nor my nystagmus. I don’t notice it until people point it out, but it’s still a thing people with albinism need to deal with. So don’t ignore that either.

7. Technology

There are many methods of technology we use—white canes being one of them. Most of us do use a white canes, although sometimes, it’s more so for your safety than ours. It has a double meaning—it both helps us navigate the area so we don’t trip and fall on our faces, but it’s also used to indicate to people passing by that we’re visually impaired. There are many different methods of cane usage and types of canes, but there’s no way I could fit it all on here. Canes do come in all sorts of colors though! So feel free to design a cane of your choosing! All of them are red in the ends, however. Another thing I’ve gotten asked about a lot is a service dog. Service dogs are typically given to people who are legally blind (which all PWAs are), so a guide dog could be a possibility for your character! And if you’re feeling extra spicy, apparently seeing eye ponies exist…I don’t have much info on them though lol. The only downside to a service dog is you need to be beyond proficient in cane usage in order to qualify for a dog. Service dogs aren’t pets. But a cane and/or a service dog are typical with PWAs.

8. The word “albino”

This one’s more of a nitpick on my end, and I guess it depends on who you’re talking to, but most people with albinism aren’t too fond of the word “albino”. I can’t speak for everyone, I can only speak for myself, but the word “albino” feels borderline animalistic and inhuman. It’s incredibly degrading and the only reason I refer to myself as “albino” is 1. out of habit and 2. because people know the word albino, but they don’t know albinism, the condition. So if I say “I have albinism” people don’t know what I’m talking about until I say smth like “Yeah, I’m albino”. Then people get it, and half the time it’s followed up by “oh like an animal?” But generally speaking, I would strongly advise not using that word. It’s a “put the person before the condition” sort of thing. Person with albinism or PWA is preferred. Albino is such a gross, degrading and inhuman thing to call someone. That’s what you call an animal. Again, this might be a me thing, but just to play it safe in case other PWAs feel similarly to how I do, just say person with albinism, or shorten it to PWA.

9. Stereotypes to avoid

If you’ve seen my posts before, you know about most of these, but there are some stereotypes that get tossed around in movies that people inadvertently attach to their OCs. One of which being the “evil albino” caricature. This one’s the most common one—albinism is often portrayed as an evil condition. One that makes the haver of it unsympathetic and villainous—the most common example is Silas/The Evil Albino from the Da Vinci Code. We aren’t evil or mean because we have albinism. If you meet a mean person with albinism, it’s just because they’re a mean person, not because the condition made them that way. Another one is the “Magical Albino” myth. This one started in more secluded parts of Africa I believe—people with albinism were often hunted and killed for their body parts, and said body parts were ingested and eaten because people with albinism were thought to hold magical healing properties. Giving your OC with albinism magic is harmful because of that myth. Unless some/all of your characters have magic powers, don’t give the one character with albinism magic. Not really a stereotype but please don’t make your characters incompetent because of their albinism. Being visually impaired/disabled doesn’t make one stupid. Don’t make your character with albinism the cookie cutter evil, dastardly character without a heart who has magical abilities. Another thing is, don’t let the character be an outcast unless it’s genuinely important to the story. A lot of PWAs are isolated enough as is, so unless it’s a genuine part of the story, I’d try to avoid it.

10.) Albinism around the world + fetishism

Different places treat albinism differently. As mentioned, in some remote parts of Africa, people with albinism are hunted and killed for food and so their body parts can be made into healing potions. In other countries, albinism is viewed as bad luck, leaving those people ostracised and even abandoned at times. Depending on where your character is from, give a bit of research into how PWAs are treated and responded to in that place. Some places treat us better than others. It’s all different. Just put a little bit of thought into it. Don’t be lazy. Albinism is also an extremely fetishized condition. It’s often chalked up to the looks, and that’s not all we are. It’s easy to fall into the pit of fetishism, but if you think you’ve crossed that line? chances are, you have. Even based off of the “frequently asked google searches” about albinism you can tell it’s extremely fetishized. Please just treat your characters with albinism as normal people and not sex toys used for their “unique looks”. I assure you, no person with albinism wants to, or should be okay with being fetishized like that. It’s gross.

Anyway, yeah! That’s all I can think of. I’ll probably reblog this if I think of anything to add. If you have questions, shoot me an ask! I’d be more than happy to help. I’m not gonna candy coat it, but a lot of characters with albinism are made very lazily, and I partially blame the movie industry for how horribly we’re represented, therefore how horribly we’re thought to be, but please give this a read through.

(i don’t normally ask this but please feel free to reblog to reach a wider audience! this is incredibly, incredibly important to me <3)

i think people find this to be complicated and i’ll admit, i find it complicated myself despite my mom and dad having taught me how it works many times in the past, but i’ll try to explain it as best i can! keep in mind im not a bio major (yet!) and im not expert in genetics so there’s prolly gonna be imperfections but yeah.

okay, so albinism is present in recessive genes. recessive genes require two copies of the same gene in order to be passed down to a child. in other words, both parents have to be carriers of the albinism gene in order for that child to have it. so in my case, i know my great uncle has albinism, meaning my nana’s/his parents (my great grandparents) were birth carriers of the gene, and they passed it down to my nana who had to have passed it down to my mom. i’m not so sure where my dad gets it from because as far as i know, i don’t have any relatives with albinism on his side of the family, but he’s still a carrier of it.

when both parents are carriers of the albinism gene, there is a 1 out of 4 chance that the child will have albinism. with albinism being a recessive gene, it doesn’t present unless both parents have that gene. if it was a dominant gene, only one parent would need to be a carrier of the albinism gene for a child to have it. in short, if one or neither parent carries the albinism gene, there’s a 0% chance the baby will have albinism. if both parents are carriers of the gene, there’s a 25% chance the baby will have albinism. and that’s if neither parent has albinism themselves and just carries the genes. if one parent has albinism but the other doesn’t carry the gene, the baby cannot have albinism. however, if one parent has albinism and the other carries the gene, there is a 50% chance the child will have albinism. if both parents have albinism (and if it’s the same type of albinism—say they both have OCA albinism) all their kids will have albinism. if both parents have albinism and they both have different kids of albinism (say one parent has OA albinism and the other has OCA), there is a 0% chance the baby can have albinism since the generic code for OCA and OA albinism are different. however, the baby will carry on the gene for both OCA and OA albinism.

i could get more complex with it but for the sake of simplicity and my own ignorance, this is as far as i’m gonna go with it. 1 in 17,000-20,000 babies have albinism in the us, although in different parts of the world, this can fluctuate. from what i could find, maybe .5% of the world has it.

plants and trees can actually have albinism! :)

there’s a specific kind of tree called an albino redwood that’s native to california i believe? but it’s a plant that cannot produce chlorophyll, leaving it white in color. albinism is a genetic condition, so while it’s much more common with animals and people, plants can actually have it too considering they have their own genetic makeup as well that gets passed down from parents to offspring since plants produce the seeds to continue on that genetic lineup.