i hate when people who dont have marfans make/headcanon characters with marfans as some quirky trait. i really do, i've seen it a lot in my life as someone who was diagnosed at 3 with the condition and it honestly grinds my gears they always do the most stereotype-y traits, or ignore how much of a struggle it is to live with marfans, or how marfans can fuck up your body further by just how much shit it causes.

to put it into perspective, i got tagged like a fucking animal at school because they didnt want to take too much care into explaining that i needed extra care if something happened, or that people should be gentle with me because i could die on school grounds. ive sat cooped up in my home most of my life, i've only been on a fair ride once because getting on a roller coaster could harm me as well. i need help walking or getting around because my body cant always handle it, i have other problems due to marfans that have hurt me greatly for my entire life.

i'm slowly going blind from marfans and theres nothing a doctor can do that will stick. i risk aortic dissection simply by being hit in the chest, i used to be afraid of going to bed because if anything hit my chest too hard i could literally fucking die then and there, because my heart would fucking collapse on itself and theres a decent chance that i wouldnt make it to the emergency room.

it's not just some trait, it is a disability. and it's not quirky!! it was never fucking quirky!!! getting discriminated against for being disabled by the age of 4 wasnt fun! it wasnt silly! it was traumatizing!!!!

if you're going to make a character or headcanon a character with marfans take into account how much of a stereotype you're making them. there are short people with marfans, fat people with marfans (like myself), poc with marfans, there are people who cannot walk or function because of marfans, people with marfans arent scary or shy or weak all the time. we're human people! we vary!

talk to actual people with marfans. look up posts about the condition from people with the condition. dont confuse marfans with EDS. just have common sense!! its exhausting trying to look at content from people like me and either seeing headcanons, EDS posts, or people telling everyone with marfans that they have no hope (this ones common on reddit, but it applies).

people with marfans dont immediately die either, btw. i saw a post recently that was just "haha this character better have had amazing doctors or his marfans would kill him in 2 seconds!!!" and that's not how it works. of course it can be fatal thats with all things, but dont act like its an immediate death sentence, please. i'm sure a lot of us have heard it enough already

the funniest meltdown ive ever had was in college when i got so overstimulated that i could Not speak, including over text. one of my friends was trying to talk me through it but i was solely using emojis because they were easier than trying to come up with words so he started using primarily emojis as well just to make things feel balanced. this was not the Most effective strategy... until. he tried to ask me "you okay?" but the way he chose to do that was by sending "👉🏼👌🏼❓" and i was so shocked by suddenly being asked if i was dtf that i was like WHAT???? WHAT DID YOU JUST SAY TO ME?????????? and thus was verbal again

i think we should remind musicians they can absolutely make up little stories for their songs btw. it doesn’t have to be about them at all. you can invent a guy and put him in situations to music. time honoured tradition in fact.

lived my whole life in guilt bc i thought i was responsible for people's feelings. newly realizing that other people are responsible for their feelings and reactions, even if they make it seem like i'm the problem. a lot of the time it really has to do w them and their own emotional regulation. i can't keep thinking i'm not allowed to have space bc of other people's insecurities. like i literally refuse to dim myself. other people are responsible for their feelings just as i'm responsible for mine.

I saw this on FB today and I wanna try and express something about it. Like, you know the curbcutter effect? Where when curbcuts are put in it benefits everyone (bicyclists, people with baby strollers etc) and not just disabled people?

There is also whatever the opposite of the curbcutter effect is. And this is that.

This isn't just anti-adhd/autism propaganda... this is anti-child propaganda.

Kids have developmentally appropriate ways that they need to move their bodies and express themselves and sitting perfectly still staring straight ahead is not natural or good for ANY CHILD.

Don't get me wrong, I was punished unduly as a kid for being neurodivergent (and other types of kid will ALSO be punished unduly for it... Black kids come to mind) and thus UNABLE to perform this -- but even the kids who ARE able to perform this type of behavior are not SERVED WELL by it. They don't benefit from it.

This is bad for everyone.

The idea that bc some kids may be capable of complying with unfair expectations, those expectations don't hurt them... is a dangerous idea. Compliance isn't thriving. Expectation of compliance isn't fair treatment.

Blood of my blood

at some point it's just like. do they even fucking like the thing they're asking AI to make? "oh we'll just use AI for all the scripts" "we'll just use AI for art" "no worries AI can write this book" "oh, AI could easily design this"

like... it's so clear they've never stood in the middle of an art museum and felt like crying, looking at a piece that somehow cuts into your marrow even though the artist and you are separated by space and time. they've never looked at a poem - once, twice, three times - just because the words feel like a fired gun, something too-close, clanging behind your eyes. they've never gotten to the end of the movie and had to arrive, blinking, back into their body, laughing a little because they were holding their breath without realizing.

"oh AI can mimic style" "AI can mimic emotion" "AI can mimic you and your job is almost gone, kid."

... how do i explain to you - you can make AI that does a perfect job of imitating me. you could disseminate it through the entire world and make so much money, using my works and my ideas and my everything.

and i'd still keep writing.

i don't know there's a word for it. in high school, we become aware that the way we feel about our artform is a cliche - it's like breathing. over and over, artists all feel the same thing. "i write because i need to" and "my music is how i speak" and "i make art because it's either that or i stop existing." it is such a common experience, the violence and immediacy we mean behind it is like breathing to me - comes out like a useless understatement. it's a cliche because we all feel it, not because the experience isn't actually persistent. so many of us have this ... fluttering urgency behind our ribs.

i'm not doing it for the money. for a star on the ground in some city i've never visited. i am doing it because when i was seven i started taking notebooks with me on walks. i am doing it because in second grade i wrote a poem and stood up in front of my whole class to read it out while i shook with nerves. i am doing it because i spent high school scribbling all my feelings down. i am doing it for the 16 year old me and the 18 year old me and the today-me, how we can never put the pen down. you can take me down to a subatomic layer, eviscerate me - and never find the source of it; it is of me. when i was 19 i named this blog inkskinned because i was dramatic and lonely and it felt like the only thing that was actually permanently-true about me was that this is what is inside of me, that the words come up over everything, coat everything, bloom their little twilight arias into every nook and corner and alley

"we're gonna replace you". that is okay. you think that i am writing to fill a space. that someone said JOB OPENING: Writer Needed, and i wrote to answer. you think one raindrop replaces another, and i think they're both just falling. you think art has a place, that is simply arrives on walls when it is needed, that is only ever on demand, perfect, easily requested. you see "audience spending" and "marketability" and "multi-line merch opportunity"

and i see a kid drowning. i am writing to make her a boat. i am writing because what used to be a river raft has long become a fully-rigged ship. i am writing because you can fucking rip this out of my cold dead clammy hands and i will still come back as a ghost and i will still be penning poems about it.

it isn't even love. the word we use the most i think is "passion". devotion, obsession, necessity. my favorite little fact about the magic of artists - "abracadabra" means i create as i speak. we make because it sluices out of us. because we look down and our hands are somehow already busy. because it was the first thing we knew and it is our backbone and heartbreak and everything. because we have given up well-paying jobs and a "real life" and the approval of our parents. we create because - the cliche again. it's like breathing. we create because we must.

you create because you're greedy.

I watched Starship Troopers tonight.

have realized that while i am not a fan necessarily of "people meet and immediately fall in love" i am a fan of "people meet and are immediately obsessed with each other." the love can come later but the absolute fixation should be immediate

Today my therapist introduced me to a concept surrounding disability that she called "hLep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hLep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!

Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.

going through my old journals as part of therapy homework and i'm reading a section written in the emotional wreckage of a full-on breakdown when i get hit with this line:

There is never a satisfying answer to ‘Why didn’t they love me?’

like wow babe. good fucking point

there is something unique and deeply special about monkey d luffy as a protagonist. he’s overwhelmingly ADORED by the fandom. he’s consistently the most or at least top 3 most popular characters in the whole series. peoples takes about him are gushingly positive. and that’s… really uncommon.

a LOT of fandoms i’ve witnessed or been in have a tendency to favor characters other than the main character. especially in anime. the main characters are often written as a blank slate for readers/watchers to project onto, but that makes them not as interesting and so they don’t get the fan attention.

but luffy is so far from that. and he’s ALWAYS been this way. we love him so much. he’s the heart of the story and the heart of the fandom in every single way. and i think that speaks to how well-written he is as a character. he’s fun and charming and complex and interesting and he makes us laugh and cry and cheer and hope and love. he’s able to inspire so much joy in people, both in his world but also in this one. and i think that’s really special. i feel so grateful to have found this story that means so much to me, and i’m so grateful that luffy exists.

so, this is something i've noticed in fandom spaces and want to see how people ~generally~ feel regarding genderbends & genderswaps, especially if they are transgender themselves!

if there's a reason for why you like/dislike genderbends please share in the tags, this is something that genuinely interests me

friend wanted to see my tumblr, and when i told him i can’t show it to him bc it’s basically my personal diary he went “oh so I can’t see it but a bunch of strangers on tumblr can??” he literally does not get me. no one will get me like the people in my phone get me

I feel like many people have a fundamental misconception of what unreliable narrator means. It's simply a narrative vehicle not a character flaw or a sign that the character is a bad person. There are also many different types of unreliable narrators in fiction. Being an unreliable narrator doesn't necessarily mean that the character is 'wrong', it definitely doesn't mean that they're wrong about everything even if some aspects in their story are inaccurate, and only some unreliable narrators actively and consciously lie. Stories that have unreliable narrators also tend to deal with perception and memory and they often don't even have one objective truth, just different versions. It reflects real life where we know human memory is highly unreliable and vague and people can interpret same events very differently

"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.