Hello! I need advice for writing a character with oculocutaneous albinism who’s a platonic love interest without descriptions of her coming off as fetishising albinism. Her name is Glass and she’s blind and an investigative journalist and will be a reoccurring character in the series. The MC is gay and he describes her very affectionately in the narrative. When she’s introduced he fondly points out (to the reader) a lot of traits about her including things related to her albinism like “slightly wavy snow white hair in a fashionable bob and striking dark blue eyes that gently danced back and forth. One eye was pointing slightly inwards as she tilted her head and smirked at him.” I got the “dancing eyes” idea from a short film made by someone with albinism and nystagmus. I’m going to try and describe other traits about her more, especially about her personality to counter this.
I also have a question that might be too specific? I’m planning on giving her a little brother with ocular albinism, OA. If someone has a daughter with OCA are they more likely to have a son with OA or are the two kinds of albinism genetically unrelated? I wanted to include him to have more then one blind character in the story. Thanks for your time. :) -Anon Blue.
Hey! We don't currently have mods with Albinism, so I'll try my best. I recommend our #albinism representation tag for resources made by people with it.
If you don't put most of the attention of how she looks to her hair or skin color, I think it should be fine. It's okay to mention it—I mean, that's just how she is, would be kinda weird to fully ignore it—but don't make other characters or the narrator gush over her paleness or eye color every time she comes up. Change it up and praise her fashion sense (like you did with her hairstyle), the shape of her nose, how bushy her eyebrows are, or how her gums show when she's smiling instead. Her appearance shouldn't be reduced to just "girl with albinism"—give her other visual traits.
For other descriptors, I would avoid making her "angelic" or "ethereal" because of her disability. Remember to not make it mystic or magical; there's the whole "Magical Albino" thing out here that you should try to avoid.
You mentioning nystagmus and strabismus is great. Those are often forgotten or ignored in characters with albinism because they're not seen as "pretty". I've seen some people describe their nystagmus as "dancing eyes" before too, I think it's a very cool of conveying it.
In general, a good way to avoid fetishization is to include the "boring/mundane" things. When you show the medical parts of albinism like the esotropia, avoiding the sun, having her use a white cane or a guide animal, or using Braille, the representation will be more informed overall and not just an "aesthetic"—which a lot of characters with albinism unfortunately end up being. There's a big difference between a blind journalist guided by a German shepherd who happens to not have melanin and needs a Big Hat, and an evil sniper with bright red eyes and mysterious powers.
In case that Glass is Black, I'd recommend looking at the #albinism tag at @writingwithcolor —it's always good to make sure your descriptions don't come off as unintentionally colorist if you go into her skin color. Things like describing her as more frail or delicate (when compared to other Black characters) would be in poor taste, so look out for that intersectionality if it applies.
The brother with ocular albinism part; those two types are completely unrelated, and it would be incredibly rare (not impossible) for that to happen as far as I know. For reference, almost all OCA (1-7) and OA (1-2) types are caused by completely different genes. The only exception could be OA1 and OA3; we don't currently know what causes the third one, and there's a theory that it's just a different presentation of the first. But I'm not aware of anything like that for oculocutaneous albinism, so if Glass has OCA1 (as I'm assuming from the description), her brother would have OCA1 as well (as opposed to OCA3 or any other subtype) if anything.
One interesting thing that you could do to have him have OA that I never see in fiction is to have him be adopted. I know multiple families who had a child with a certain disability and decided to adopt a second (or third, or fourth...) one with it. I think it could be very cool and would make sense with him being the younger one. Here is an interview/vlog from a real-life family with six adopted blind kids, if you want an example of that.
Wanting to include multiple blind characters is a great idea—if adoption doesn't work for your story, he could have the same type of albinism as Glass or have a non-genetic cause of blindness, like CVI, Retinopathy of Prematurity, glaucoma, or a whole lot of other things.
A story about a blind investigative journalist sounds awesome. Good luck with your writing.
mod Sasza
