#albinism representation

My oc has oca2 albinism along with that brown skin and nystagmus, and golden blonde hair, I wanted ask if that’s okay especially since doing ton of research on it.

Hello!

The appearance you mention is very much possible, although generally more associated with OCA3 rather than OCA2 (the darkest-skinned people with it that I've seen were somewhat tan at most). But overall yes it's very much one of the ways in which albinism can present.

Hi!

Anecdotally, I know a decent number of people with albinism who are deaf or hard of hearing, so I'd say it's not uncommon.

It would be fairly rare to be genetically deaf and have oculocutaneous albinism without some family history of both, but it would be significantly less rare if, say, one parent was Deaf.

Albinism is recessive, so both parents would need to have the gene, but genetic deafness can be dominant or recessive.

There's also non-genetic deafness, which just happens. Almost half of congenital deafness is not inherited. This would make your character's child being deaf less likely, but it is also a possibility.

Mod Rock

Hey,

both albinism and deafness are a feature in many conditions. One of those that has both is literally called albinism-deafness syndrome, which is X-linked recessive, so it depends on the both of the characters' exact genetics (chromosomes) if the kid would inherit it. Ocular albinism type 3 also comes with hearing loss. ABCD syndrome, same thing except autosomal recessive. All of these are rare, but they certainly exist. I think it'd be rarer to have "regular" albinism (whether OCA or OA 1/2) with "regular" deafness but it's absolutely possible as well.

Also, please don't say 'albino'.

(Her dad also has Albinism as well as Strabismus. He's not treated as a joke by the narrative and is a responsible stay at home dad)

Hey!

Standard disclaimer, we have no active mods with albinism right now, take everything with a grain of salt + check the linked resources and/or the albinism representation tag.

For this ask I'm going to assume that your character has oculocutaneous albinism (OCA). If I'm wrong feel free to resend the question.

It is unlikely that your character's eyesight will be fully corrected with contact lenses. People with albinism do often wear glasses because refractive errors are extremely common, but it's usually about having better vision, not good vision. Much of the vision loss in albinism is non-correctable with glasses or contact lenses. Some common issues include foveal hypoplasia (a retina problem) and optic nerve abnormalities, which are completely different things.

As a side note, depending on the type of albinism, she might already have blue eyes. So you'd have to consider if the contact lenses are worth it for her, especially since she would probably need sunglasses, as a lot of people with albinism do, due to photophobia.

If you want to not magically erase her disability, consider:

photophobia and the ways of dealing with that,

sun sensitivity and the ways of dealing with that,

low vision aids (yes, even if she uses contact lenses),

if she has a different type of albinism than OCA, then you have to consider the possibility of autoimmune diseases, bleeding problems, lung disease, etc.

If she's a wizard, give her a high-contrast spell book or a magnifying glass. If she's not blind (not all people with albinism are), then she might not need a white cane or a guide dog, but that's just one end of the spectrum. There are many more options between "no aids needed" and "aids used by totally blind people".

To quote a post from mod Zohar:

"A good litmus test for this is to consider if you would give her OA — a type of albinism that does not result in the white hair/pale skin/red or purple looking eyes. If that is an automatic dealbreaker for you, then that is a sign to re-think your motives."

It's important that your character actually passes this test - if you want her to have no vision problems (which are unavoidable in albinism, so throwing contact lenses on them and calling it a day would be an unrealistic solution), you can always just give her light skin and hair without attaching a medical condition to it.

I recommend you check the NOAH website for more research.

Hope this helps,

Hello, thank you for your ask! We currently don't have any active mods with albinism, so all the information comes from research, and if anyone with albinism would like to give their opinion feel free!

It depends on what kind of albinism your character has. For future reference please also include what symptoms your character has and their severity as well! The most common type of albinism is OCA, which has eight subtypes (though only the first four are common, and OCA8 is a more recently discovered type so there's very little information on it), but there are many more types besides OCA as well [this website has a pretty good list (not 100% complete but good nonetheless), though its symptom section is pretty hard to understand so I would also definitely google them]. OCA1a is what most people think of when they think of albinism, as it causes a complete lack of melanin in the skin and eyes, and tends to have the most severe eyesight symptoms for that reason. Other types of albinism have varying levels of melanin, and generally less severe visual impairment because of it. So while someone with OCA1 could have very severe blindness and photophobia, another person with OCA7 could have nearsightedness and nystagmus, as well as dark skin and hair. [Quick note, OCA1-8 isn't a severity scale or anything, for example OCA2 & OCA4 both tend to have very similar symptoms while OCA3 can have more melanin than either of them. Also the examples listed are just examples and don't fully show how OCA1 & 7 can affect eyesight!]

Symptoms of albinism can include nystagmus, photophobia, farsightedness, nearsightedness, strabismus, poor depth perception, refractive errors due to the shape of the eye, and more. It can also cause a lack of pigmentation in the retina, which affects the brain's ability to process visual stimuli rather than affecting how the eye itself sees.

Essentially the severity and symptoms of your character's albinism is going to entirely depend on what type of albinism they have. I would recommend doing some more research to choose a type, checking out our #albinism representation, #blind characters and #photophobia representation tags, and if you still have more questions feel free to reach back to us!

Have a nice day!

I've heard that albinism can appear in any race group, but I'd just like to know how you view just random characters casually having albinism (even without it being sexualized for fetishized)

Hey!

Casual representation is great. Not just albinism, but disability in general. You don't always have to go into complicated details of "how's it like to be disabled". But just because it isn't meant to be a work about a certain condition doesn't mean you shouldn't do your diligent research—if by making random characters have albinism you mean giving them the "aesthetic" and nothing besides that, it would be fetishization or at least just poor representation.

Also, for this answer I'll be talking about oculocutaneous albinism because I'm fairly sure that's what you were referring to, but please be aware that there are other types, like;

ocular albinism (has 3 different subtypes),

Heřmanský–Pudlák syndrome,

Chédiak–Higashi syndrome,

Griscelli syndrome.

Oculocutaneous albinism also has multiple (7) main subtypes, with some of them splitting further. You should take that into consideration as well when deciding on what kind of albinism your character(s) has. I'm not saying that you should write "X has oculocutaneous albinism, type OCA1b" in your book, but it will help to inform you what their needs and symptoms could be.

Another thing I will mention is that the word "albino" is generally not the preferred term, and you probably shouldn't use it unless you have albinism yourself. Here's a page on it by the National [USA] Organization for Albinism and Hypopigmentation or this post we reblogged recently.

To make sure that your representation works, you need to understand how albinism works. Even if it's a side or minor character, you should be aware of the symptoms other than just the lack of melanin. Prime example, the extreme majority of characters with albinism in media don't have any vision issues at all, which is not how it is in real life. If you make a character with albinism, you're making a character who is blind or low vision. It's important to research aids and assistive technology, as well as blindness tropes that your character could fall into. For a character that only shows up occasionally, it's still important to show things like a white cane, their light sensitivity, them having to avoid the sun.

If that's your approach to "making random characters be disabled" then you should be good. A lot of disabled characters end up boxed into specific tropes (for oculocutaneous albinism: being evil, being emotionless, having magic powers [in a setting where that's not the norm], or being mystified because of their disability) so having e.g. a background character with albinism who has a regular job and shows up in the story from time to time would mitigate that. People with albinism are normal people.

It's true that a person of any race or ethnicity can have albinism. Some types of albinism are more common in certain demographics; for example, Heřmanský–Pudlák syndrome appears much more frequently in Puerto Rico and OCA4 is almost exclusively seen in Japan, and oculocutaneous albinism is more common in sub-Saharan Africa as a whole (which is a giant area, but there's not much statistics about it). But your character could be of any background to have albinism in general.

In short, if the representation would end at "giving a character pale skin, white hair and red eyes*" then it's more fetishistic than representative; that's just using the appearance but ignoring everything else. Keep in mind that it's a medical condition, not an aesthetic. If a character stops having albinism when they dye their hair and wear colored contacts, then that's just a character who happened to have light hair skin and eyes, not a person with albinism. Good representation of disability means showing the disabling parts of it—again, you don't have to go into detail about how it is to have albinism if the character shows up for two chapters, but show them navigating with a white cane or at least wearing clothes that take into account sensitivity to sunlight.

*In real life, people with albinism don't have red eyes. I mention it because it shows up in media all the time. It just screams fetishization because it's not a thing—most people with albinism will have blue, gray, hazel, or brown (!) eyes.

I hope that this helps—if you have a more specific question, feel free to send another ask. I also recommend going through our #albinism representation tag, it might answer some of the questions you might have.

Her name is Lis, and she is one of the main characters in an urban fantasy setting. She has an older sister who doesn't have albinism, and I'm still considering if I'm gonna give her (Lis) nystagmus and/or dyslexia as well (nystagmus because apparently it's common between people with albinism, so I thought it'd make sense, and dyslexia because it's an idea I've been cooking in my head since her early concepts). She also learns magic on the course of the story, if that's relevant.

She's a very bubbly teen with a chaotic personality, and I decided to give her a very colorful design to represent that, and I also thought tinted glasses would both help her photophobia and fit in with her overall design, so I'm doing more research on them as well. I'm still figuring out how her vision is because I'm not familiar with the concepts yet, but I think she has low vision moreso 20/60.

I was wondering which other aids she could use on her day-to-day vibe. Any tips?

And thank you for running this blog!

oh, i forgot to give another information in my former ask (about Lis, the girl with albinism), that my character lives in North East Brazil, that is, in a very warm and tropical country, so maybe the accomodations she needs might change because of that.

Hello!

We do not currently have active mods with albinism, so I will respond as someone with photophobia, just keep this in mind.

Glasses are definitely good. They do need to be darkened, but if you want to play with colors you can either give Lis colorful frames or use a dark shade of a color rather than just black/gray for the shades. You can also make it so she has multiple pairs that she switches around to go with her outfits if she's into fashion - she'd be probably wearing sunglasses every day, it'd make sense for her to have more than one.

Another aid that's really helpful (and not really seen as an aid) is a big hat, or at least big enough to protect someone from the sun above. Glasses are good, but they only cover the front (unless she's wearing sport ones that go closer to the skin) and the light from above can still be painful. Bucket hats, sun hats, baseball caps, anything helps.

This is the part you take with a grain of salt because I don't have albinism;

Giving her nystagmus and/or strabismus is good since it's really common. Dyslexia doesn't have anything to do with albinism, but there's nothing unusual about a person having two unrelated conditions.

Assuming she has oculocutaneous albinism (there are multiple types of albinism, and not all of them involve the melanin of the skin), she will need to protect her skin too to not be constantly sunburnt. Since she lives in a hot and sunny place, flowy, but long clothes would be the best. Think maxi skirts or breathable shirts with longer sleeves. If she has ocular albinism, I don't think this matters since her skin shouldn't be affected. For the rarer types, you'd have to check her specific one.

The rest would be focusing on her as a low vision character, and a character who has photophobia on top of that - you can be able to navigate well at home where it's relatively dark, and not see shit when outside because it's too bright. So she might, for example, have to use a white cane sometimes, but not at other times. Or if her sunglasses are unusable for whatever reason (those break just as all other aids do), she'd need some other way to navigate. What does she do then? Is she so used to relying on her remaining vision that she'd need a sighted guide (I definitely was there because of my photophobia being really bad), or does she have enough O&M training to be able to use a white cane? What would her resources allow? Etc.

I'm also assuming that she's not the only magical character, but I'd advise you to read up on the "mystical albino" trope, since it's really prevalent with characters with albinism (oculocutaneous mainly).

Hope this helps,

I have a character with albinism in my story and I need help figuring out what to do about her photophobia. The setting is a medieval fantasy world and the character is a dragon.

The problem I'm having is that she's huge. She's probably around the size of a blue whale.

I was going to give her sunglasses, but they would be absolutely massive and extremely heavy, and I feel like the weight of the frame pressing down on her skin all day would probably be extremely uncomfortable or even cause skin damage. Also, the glasses would probably be really thick and I'm not sure if she would even be able to see through that much tinted glass?

I thought about a hat, but I'm not sure what it would be made out of. I feel like any sort of fabric at that size would just crumple under its own weight. I could have supports inside of it, but that would probably make it really heavy which wouldn't be good for her neck.

The only other thing I can think of is some sort of semi-transparent fabric veil that she can tie around her head that covers her eyes, but I know that trope is kind of iffy. Although I'm not sure if it would count since she's not legally blind (her vision is around 20/100. I think. Would vision measurments still work the same for someone with giant eyeballs? 🤔)

Is there anything else I can give her to protect her eyes that won't hurt her?

If it makes a difference there are two blind characters in the story who do not wear glasses of any kind, and another character with albinism who wears sunglasses and a hat.

Hello!

I believe I'm the only active mod with photophobia so I'll try answering, but keep in mind I'm neither blind nor do I have albinism.

So photophobia is a spectrum, right - it's really wide. On one end you have people who can't open their eyes because of the pain unless they're in a completely blacked-out room and on the other are people who kinda just push through it and don't bother with anything. There's a huge variety in severity. I was on both of these (plus everything in-between, plus non-photophobic at one point too) so I'll try to give you some ideas.

If she's on the first end, then well - close the eyes, and hopefully she has a sighted guide. Sunglasses don't help here anyway (source: experience) unless she'd have to wear them while closing her eyes because the tiny amount of light showing through a person's eyelids can still be painful (source: experience). A hat or a veil here would be like putting a bandage on someone who blew up. If she's permanently like this, she's functionally totally blind (but with some stereotypes that don't really represent all totally blind people - most of them don't keep their eyes closed 24/7).

If she's on the second end then I already kinda answered your question; Nothing is sometimes a solution. Same how not everyone with knee pain uses a cane, even if it technically could be of some benefit - too much hassle.

Now for the hard part: everything in-between these two. Since your character is somewhat logistically complicated due to both being a dragon and of that size, I'll try to think of the accommodations one can do with their body rather than external aids.

Squinting is a legitimate strategy. Is it great, not really. But it does work for a lot of people. You can squint your way through a lot.

Hand (claw?) to shield against the sun, same as above. Most people (IDK about dragons) don't sit around in bright sun all day, if you quickly have to go through an area like this you can just cover it.

Brow ridge (no idea what is the dragon equivalent) is a sort of built-in sun protection on its own to be honest. It's definitely not 100% for obvious reasons, but it does help against the brightest light sources. However, with her being a dragon this could be a legitimately successful solution - both Eastern Asian and European dragons tend to be portrayed with protruding parts above their eyes. Normally I'd say that it would be a bit of a cop-out, but as you say there is another character with the same disability, so I'm not worried here.

Last solution would be some sort of contacts. Obviously they didn't exist in medieval times, but there's a dragon there already so it's fine to get creative - could shed scales be thinned down and used as a block-out contact? Maybe some sort of mineral? Or leaves from a comically big tree? All of these would definitely hurt a human but again, dragon anatomy and how tough their eyes are is free to speculate about until something very unexpected happens.

Now for the rest;

Consider her lifestyle and where she physically lives. Is there a lot of sun there? Does she go outside during the day? Does she prefer winter over summer because she can go out more (and/or with less pain)? Not all photophobiacs will have the same kind of lifestyle and will thus need different accommodations; keep that in mind.

Hope this helps! Good luck writing disabled dragons

I am writing a character with albinism in medieval dark fantasy, and can't quite figure out how to ease her photophobia. It's been mentioned on this blog that covering eyes with fabric won't help, but the sun glasses weren't invented as well, so I'd really appreciate any alternative.

Thanks!!

Hi asker,

A hat!

Hats with brims and/or veils tend to get invented and/or popularized when you need the sun out of your eyes, whether that's because you're photophobic or you work outside. On top of that, hats have been an integral part of fashion for a very long time.

Something like a straw or felt hat with a wide brim could be effective for your character. A veil as a part of it, which is a sheer fabric but is not directly covering the eyes, could also help. However, a veil (like sunglasses) can obscure a person’s remaining vision. If they rely on it, this could potentially be an issue.

In fact, people with photophobia don't all wear sunglasses today. They might also wear hats — like baseball caps, sun hats, visors, etc.

Hope this helps,