a moment of silence for all us disabled ones who had to watch each of their friends move on with their lives without you and get jobs, go to school, have partners come and go, get engaged and move house etc.
shout out to my fellow struggling people who are still sitting in the same bedroom they grew up in. the ones who can't get a job, can't make new friends, can't find a partner or partners, can't move house and can't go to school.
I hope one day we can all find someone to at least sit with us in our rooms. I see you and I understand... and I'm sorry we can't be that person for each other
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i talked about it a little bit already but i have things to say about it. for context, i was born with amniotic band syndrome. the amniotic band wrapped around my left wrist in utero and stunted the growth of my hand. i was born with about half a palm, four nubs for fingers, and a twisted half of a thumb. i can open and close my thumb and pinkie joint like a claw.
yesterday at work i had a shift in the room with 5-10 year old kids. i had my left hand hidden in my sleeve (a bad habit of mine). a kid asked if he could see my hand, and even though internally i was debating running into traffic, i said “sure you can” and showed him my hands. he stared for a moment, looking disturbed, and then said “i don’t want to look at that anymore”. that hurt to hear, but i understand that kids are new to the world and he probably didn’t mean it out of malice. i put my hand away again, told him that it was okay, and that i was just born that way.
he then went on to talk about how he knows a kid with a similar hand to mine and called it “ugly”. i told him that wasn’t a very kind thing to say and that he wouldn’t feel good if someone said that to him, and he replied that no one would say that to him—because he has “normal hands”, and he’s glad he does because otherwise he’d be “ugly”. i tried to talk with him for a bit about how everybody is born differently, but he just started talking about a girl he knows with a “messed up face” and pulled on his face to make it look droopy. i went on some more about how it wasn’t very kind to talk about people that way, but the conversation moved on to something else.
i’ve told my supervisors about it and they’re going to have a talk with his mom. what i wanted to say is this: i’m genuinely not upset with the kid. kids are young and naturally curious, and he clearly simply hasn’t been taught about disabled people and kind ways to speak to/about others. which is why i am upset with his parent(s). i know he’s encountered visibly deformed/disabled people before (he said so himself!), yet his parent(s) clearly haven’t had any kind of discussion with him about proper language and behavior. i knew from birth that some people were just different than others, but my parents still made a point to assert to be kind to and accepting of others. i wonder if adults in his life are the type of people to hush him and usher him away when he points out someone in a wheelchair. that kind of thing doesn’t teach politeness. it tells children that disabled people are an Other than can’t be acknowledged or spoken about; which, to a child, means disability must be something bad.
i’m lucky enough that this was a relatively mild incident, and that i’m a grownup with thicker skin. i’m worried about the other kids he mentioned to me. has he been talking to them this way? when i was a kid, i had other kids scream, cry, and run away at the sight of my hand. or follow me around pointing at me and laughing at me. or tell me i couldn’t do something because i was ugly or incapable or whatever. one time a girl at an arcade climbed to the top of the skeeball machine, pointed at me, and screamed at me to put my hand away and wouldn’t stop crying until she couldn’t see me anymore. another time, a kid saw my hand, screamed at the top of her lungs, and ran into my friend’s arms, crying hysterically about how i was scaring her. that second incident made me cry so hard i threw up when i got home. i can kind of laugh it off now, but having people react to me that way as a child is something i’m still getting over. why do you think i have a habit of keeping my hand in my sleeve? it just irritates me to see children that have clearly not been taught basic manners and kindness—their parents Clearly missed something pretty important .
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I think it would really benefit people to internalize that mental illnesses are often chronic and not acute. Some of us will never be able to jump the hurdle of managing illness, much less sustaining a sense of normalcy. Many of us will never "recover," will never manage symptoms, will never even come close to appearing normal - and this is for any condition, even the ones labeled as "simple" disorders or "easy-to-manage" disorders.
It isn't a failure if you cannot manage your symptoms. It isn't a moral failure, and you aren't an awful person. You are human. There's only so much you can do before recognizing that you cannot lift the world. Give yourself the space to be ill because, functionally, you are.
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I know its not a lot for most writers, but y'all. I wrote the first 2200 words for an original story of mine. I haven't written much of anything (outside of roleplaying) in like 15 years. I could cry. I miss this so damn much.
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