#disability asks

[whumpinggrounds]

hii! I wanna write an albino character (boy, if that's important) but I don't wanna be offensive/ignorant about it and I figured you'd be the best person to come to! How do I go about describing his skin, hair, eyes (ect) accurately? Also he's a little insecure about it btw

And, of course the actual medical aspect of it all

(please feel free to ignore, I know it's a lot! 🫶🏽🫶🏽)

Hi! Was off Tumblr for a bit but happy to answer this now if it's still relevant!

Obligatory disclaimer: I have worked with individuals with albinism before, so my advice is rooted in real people's real experience! That being said, I do not have albinism myself, nor is anyone's experience monolithic, so feel free to ignore, disagree, or seek alternate sources of info!

First things first, the word "albino." Some people consider it empowering, others actually find it incredibly offensive. I know you used it in your ask but please don't feel bad, because there isn't a consensus, and also, you didn't know! That being said, your character will maybe have strong feelings about the word, possibly rooted in life experience relating to discrimination or stereotyping - that is the case for a lot of people with albinism. When in doubt, "people with albinism" is a very safe way to phrase it, but if you want to use albino respectfully, you should also feel free to do that. I would personally advise you to steer clear of referring to this character as "an albino" or having others do so. Similar to a queer person describing themselves as "a queer" (vs. "a queer man/woman/person") for comedic effect or because of personal pride, "an albino" (vs "an albino man/woman/person") does not land the same way when someone who is not part of that identity says it.

As for physical descriptors - honestly, the hair and skin of a person with albinism is not that different from a person without the condition. In general, I would follow the same guidelines as when writing anyone's skin color, where people have been discouraged from over-relying on food metaphors or spending an unnecessary amount of time on the specifics of someone's skin, particularly when that person is nonwhite. (In this case, your character presents with pale skin, but that may not accord with their nationality or ethnicity.) Albinism does not always mean pure white skin/hair; sometimes it's pale yellow or paler than it would've otherwise been.

Eyes: Human beings with albinism do not have red or pink eyes. You probably already know this, but I still needed to say it. Please. Please do not write a character with albinism that has red eyes. Because of different structures, eyes may appear reddish in some lights, but people do not have straight up red eyes. Ever. Most common is blue, sometimes eyes are hazel.

Quick medical aside -

Your character with albinism will have light sensitive eyes and photosensitive skin. This is kinda nonnegotiable, and will affect the way they move through the world. Many people with albinism have other eye problems - low to no vision is common. I highly encourage exploring the possibility of writing a low to no vision character, because that is the lived experience of so many people with albinism! If it doesn't work for your story, or you just don't want to, that's totally okay! Give 'em some cool sunglasses and know that if they're outside all day, even with those sunglasses, they're going to have a helluva headache.

Last thing I'll say is about skin and sun, and outdoors more generally: unless the sky is black from a storm or nighttime, your character is likely not going out without all their skin covered, and sunscreen everywhere that's exposed. A character with albinism is not going to be wearing a crop top and cutoffs on a fine summer day. This sounds buzzkill-y, but truly, a responsible person with albinism is going out wearing long pants, a long-sleeve shirt, a hat, and sunglasses almost always. This does not mean responsible in a Mom Friend overachiever way - this means responsible in that they care if they get a potentially deadly illness way, because the rates of skin cancer for people with albinism are astronomical. Someone I know had an alarm on her phone and reapplied sunscreen every four hours in summer - and that was with her pants, shirt, hat, and sunglasses. She loved swimming, but had to be careful with it, because the sun reflecting off the water was way harder on her skin and eyes than a bright summer day on its own - and that was plenty hard already. I imagine snow would have the same effect.

Okay! That is my unnecessarily long and ridiculously late response - hope it is useful! If it's not, please ignore it! Best of luck, and happy writing :)

[tourettestaco]

13 and 6 for the ask game!

13 - Whats the most abled person thing someone has said to you?

Probably "Oh so you could just beat someone up and say after it was a tic so they can't get mad!" I have had multiple people say things like this to me.....

6 - Whats something good that has come out of being disabled?

Well that is quite a hard question to answer because I don't necessarily like having tourette syndrome. But I do really like the disabled community. I find it a very welcoming place, I like that I don't feel like I'm being judged for ticcing when I'm around other disabled people. I feel like I can just be myself.

[howtobeapersonwithfibro]

I would like 6 and 15 for the disability pride ask game, please

I love that you chose particularly positive questions!

6. what's something good that's come out of being disabled?

A sense of identity & a strong interest in the disability community. I've learned so much about the way people with all kinds of disabilities live, because I gained an interest in disability studies when it became my reality. I worked at a school for the blind because of this interest while I still had more physical strength (btw, I have no visual impairment myself that isn't fixed with my glasses) and it was one of the best times of my life.

15. what does disability pride mean to you?

Disability pride means having a strong sense of identity as a disabled person and seeing that as a good thing. Not your disability or symptoms necessarily, but your identity. This unique experience that belongs to you and a bunch of other people, but not most of the population. It's really cool and I'm glad a lot of us can embrace it.

[disableddyke]

[starcountr]

10 - What is your favourite real example of disability representation?

Thanks for asking anon 🦋

Don’t have many but Toph has to be my top one. Humor, vulnerability and not trying too much to overcome awkwardness worked wonders on how I viewed myself as a kid (even if I don’t have the same level of impairment)

[post-grammatic-stress]

If you've ever told a person who's had to be bedbound for a period of time that you wish you could "just stay in bed", DO IT.

Stay in bed. For days. But don't get up if someone needs you to, or you get bored, or you get antsy. Don't do anything other than rest. Just lie in your bed, whether you need to get stuff done around the house or socialize or anything else "productive". You'll have to cancel on people, you'll disappoint them, they won't understand.

And if you're thinking, "well, i CAN'T just be in bed. There's stuff that has to be done - I have plans", maybe ask yourself why you assumed a disabled person doesn't have plans or things to do or desires.

[weekly-eons]

Disability pride sylveon for disability pride month? maybe with one of those dog wheelchairs?

A good doggo!

[daily-dragon-drawing]

Disability pride dragon for disability pride month?

#129 - 身心障礙 (shēnxīn zhàng'ài / disability) - Happy disability pride month!!! ❤️

[varian-ross-horror-author]

"Disabled people should be allowed to be as independent as we can be" and "disabled people should not be pressured to be hyper-independent in order to not wind up in nursing homes against our will" are two thoughts that can, and should, exist at the same time.

[cpunkwitch]

ask game 4

[ask game 4]

game 1(link), game 2(link), game 3(link)

i know i said i wasnt gonna make another but i thought of more qiestions

1. is there a phrase or term you wish people understoon/would stop saying or otherwise have issues with especially when used by an ablebodied person? (outside the term cripple/crippled)

2. is there a phrase or term you want normalized/to hear more of?

3. is there some specific thing about the daily life of a disabled person that you want to see represented in media more?

4. is there something able bodied people who advocate for the disabled need to recognize, be aware of or stop doing themselves?

5. whats your average pain level? (if comfortable sharing)

6. whats your pain level right now (if comfortable)

7. do you have pets? if so how do they handle your disability? (ie, do they notice youre in pain and stay near you, or do they have to be moved out of the way and kept away from your aids etc)

8. do you have any hobby recomendations, especially for people with the same conditions as you?

9. what are your hobbies and how does being disabled affect them?

10. is there a certain food or drink you go to on bad days for your condition? (ie, chocolate on bad pain days or tea when the aches and shakes get worse)

11. do you have a comfort object for pain?

12. what helps you best if you have sever pain or mobility issues?

13. whats an accesibilty you have in your life that youre thankful for?

14. what are your boundaries in public?

15. whats your favourite mobility aid deco/custom/mod that youve done or seen so far?

16. what mobility aid deco/custom/mod do you think is a bad idea or wont/doesnt work?

17. if you do or would cosplay, would you fit your mobility aid into the costume and if so, how?

18. spoon ballance rn?

19. does getting sick like catching a cold affect you condition in any way?

20. free space! custom ask.

[whumpinggrounds]

Hi there! Could I ask for some advice on writing nonspeaking characters/characters with mutism? One of my characters is unable to speak due to an early injury that resulted in paralysis of his larynx. He primarily uses ASL to communicate. Do you have any tips on how best to write or characterize him?

Hi! To be honest I forgot about this ask briefly, sorry!

So, a character with a paralyzed larynx. While I don't have any experience with this specific diagnosis, I can tell you that there are some ASL signs that require sound - or don't require it, but someone fluent in sign would make sounds with certain signs, which would be a signal of true fluency. Usually, these sounds are not super distinct, as many of the people making them can't hear them. You should explore whether your character makes noise when he signs or not.

It is worth mentioning that this character might not be welcomed with open arms into the Deaf community, depending on Deaf culture where he lives. This is something that is changing right now, but the Deaf community has been known in the past to be insular and difficult to break into if one is not Deaf, even if one does use sign language for a separate medical reason. There can be toxic standards of "Deaf enough" and being "Deaf of Deaf," or the Deaf child of Deaf adults.

Other things to think about - does your character make noise when he laughs? Yells? Cries? What does any of that sound like? Does he ever make involuntary noises? What would that look and sound like?

As a person that is unable to speak, your character might or might not identify with the nonverbal community. He would likely not identify with selective mutism or "mute" as a label, as the former is a separate diagnosis, and the latter is no longer used and often considered offensive.

Think about who he surrounds himself with, how they behave, and how that behavior is addressed within the narrative. Do people learn sign for him, or not? Do they talk over him, interrupt him, ignore him, or try to guess what he's going to sign? If so, what affect does this have on your character?

Finally, the larynx doesn't just aid in speech, it also aids in preventing us from aspirating food and choking on it. Is your character able to eat by mouth? If so, how much? Does he have to eat slower and pay close attention to avoid choking? Does he have to eat certain consistencies of food to avoid choking? Does he have to drink particular consistencies of liquid to avoid choking? If he uses a feeding tube, what does that look like?

These are all just questions to get you started. It might feel overwhelming, but you don't have to know everything right away. Pick a few things that seem right, do some research, and decide more! I'm happy to talk through more questions if you have them. Anyone who has more experience with this or information to add, feel free to tag on. As always, happy writing!

[hexcii]

HI CAN I KISS FAE SUN'S RAYS??? (I saw the puffed up beast drawing and I 🥺🥺🥺 ngl zoned in on his rays lol) they look so delicate and texture wise, it reminds me of soft gummies ahshahshahs and are Moon's antennas sensitive? Cuz if so, I'll spare really, really gentle kissies 🙏🏻

Okay bye akfjowkfkwkkf (usually really nervous to ask but um yes okay thank you)

HI STARRIE!!!!!! 🩷🩷🩷💐💐

Of course you can! He’d be more than happy to let you <33

They’re a little bit sensitive so be careful! But they’re definitely not as sensitive as either of their antennae

Have fun with that >;))

[howtobeapersonwithfibro]

disability pride month asks: #12!

12. what's something (a struggle, a symptom, a weird phenomenon, or even a funny experience) people don't realize about your disability?

Standing is difficult and feels bad all the time. I get used to it and avoid it when I can. But it's hard for anyone to comprehend if they haven't felt something similar.

[inkskinned]

love when men cry about body hair bc "it's hygiene" and yet 15% of cis men leave the bathroom without washing their hands at all and an additional 35% only just wet their hands without using soap. that is nearly half of all men. that means statistically you have probably shaken hands with or been in direct contact with one of these people.

love when men say that women "only want money" when it turns out that even in equal-earning homes, women are actually adding caregiver burdens and housework from previous years, whereas men have been expanding leisure time and hobbies. in equal-earning households, men spend an average of 3.5 hours extra in leisure time per week, which is 182 hours per year - a little over a week of paid vacation time that the other partner does not receive. kinda sounds like he wants her money.

love that men have decided women are frail and weak and annoying when we scream in surprise but it turns out it's actually women who are more reliable in an emergency because men need to be convinced to actually take action and respond to the threat. like, actually, for-real: men experience such a strong sense of pride about their pre-supposed abilities that it gets them and their families killed. they are so used to dismissing women that it literally kills them.

love it. told my father this and he said there's lies, damned lies, and statistics. a year ago i tried to get him to evacuate the house during a flash flood. he ignored me and got injured. he has told me, laughing, that he never washes his hands. he has said in the last week that women are just happier when we're cooking or cleaning.

maybe i'm overly nostalgic. but it didn't used to feel so fucking bleak. it used to feel like at least a little shameful to consider women to be sheep. it just feels like the earth is round and we are still having conversations about it being flat - except these conversations are about the most obvious forms of patriarchy. like, we know about this stuff. we've known since well before the 50's.

recently andrew tate tried to justify cheating on his partner as being the "male prerogative." i don't know what the prerogative for the rest of us would be. just sitting at home, watching the slow erosion of our humanity.

[starcountr]

8 & 16!!

Thank you for the asks, sorry for the late reply but these ones are very fun 🦋

8. What sort of disability representation would you consider ideal for you?

I don’t really know… I’m not media representation’s number one advocate anyways. I mean, sure it feels good to consume fiction which is accurate but meeting someone like you in person is unmatched imo <3 in any case people with albinism who use white canes, read braille or large prints, own guide dogs and AI vision aids would be cool. A pwa not being evil for once in movies would be cool too

16. What kind of disability support would you really like to be able to get that you don't currently get?

I’d love to get my hands on Envision glasses one day but they’re so expensive and ship only to the US. Also I’d like to see how a guide dog works for me and why not try out driving one day…

[featheredadora]

Disabled people shouldn't have to jump through hoops!!