Latest Posts by zylahbee - Page 2
likes to charge, reblogs to cast
im on day 39 of a migraine, hospital have given up on me, makes it hard to not give up on myself.
people dont understand the boredom of being disabled.
i see a lot of people suggest to people to embrace boredom and creativity will come from it. that to improve your attention span and get your life back from the trap that is quick form media you need to be bored more.
but i dont think that is the case for many disabled people.
its not the case for me.
i am SO bored. EVERY day. i cannot do all the things i want to engage in. i cannot play games i cannot read i cannot do art i cannot bake. these things arent being stopped by a social media addiction, they are being stopped by my health.
and my attention span isnt struggling for the same reasons as many abled people. mine struggles because of my symptoms. my fatigue, my pain, they are distracting and fog my brain.
so disabled people, when youre looking for tips about how to improve your attention span, and engage in your hobbies more, keep in mind that the reason for your struggles may be completely different to the people who are sharing suggestions and tips on the topic.
hey all, originally this post used the term “deformed” and some people who were born with illnesses that have caused them to look different have asked me and other people to not use that word unless they have an illness that causes such. completely valid so i changed it.
i was not born with an illness that did that, however i have many medical issues that have lead to my body looking different to those around me. i do not know whether that makes me “valid” in using that term and i dont feel comfortable sharing my medical history to try and “prove” as such. so i will no longer be using that term online.
i also want to point out the OR in the first sentence of this post. i am bringing up two different occurrences here, and expanding on the disabled one.
love and kindness i am not offended by any of this 🩷
being unattractive or physically different/disabled DOES NOT equal being morally bad/evil. there is an atrocious amount of ableism that occurs when someone doesn’t look “normal.” and i am so fucking sick of it.
in media it is (almost) always the villains who are different/disabled. and media is a massive part of how people form their world views.
i want to mention arcane for example, because people seem to be confused about what good representation is. people praise the hell out of that show, and for good reason it has great things about it, but people told me it had good disabled representation. so i watched it. and while parts of the disabled representation is good.. almost all physically different/disabled characters are portrayed as bad/evil/villains at some point in their story (or all of it.) and then by the end of the show most of them are dead.
abled people i need you to understand that is not good representation. please look out for these tropes it happens ALL the time.
good representation includes different/disabled characters who are heroes and morally “good” too.
if you make all your villains physically different and none of them are heroes i hate you. i am so sick of this.
THIS its so important to understand that while yes absolutely we need support and funding for sick kids - these same kids will likely still be sick as young adults and need support then too.
I feel like people forget that pediatric illnesses generally last into adulthood like…childhood cancer survivors often have medical complications for the rest of their (adult) lives. My juvenile arthritis will be around when I’m 75. Crohn’s disease, cystic fibrosis, congenital heart defects - all of these things, when acquired in childhood, have lifelong complications. Childhood diseases aren’t just cute, happy kids smiling from hospital beds. Theyre pain and suffering and learning to live differently forever.
i want my life back fuck being ill.
yes! ive definitely seen that hypermobility trick thing
disabled people!!!
what are some illnesses/disabilities that youve never seen representation for and would love to see?
let me know in replies reblogs asks messages whatever suits you :3
i’ve decided on which story i want to tell first. very excitedddd
THIS like im not lazy im not unmotivated i have so much i want to do and see but i CANT. do you know how frustrating that is??? nobody wants me to get better more than i do.
its hard to think about world issues when most of my world is just trying to deal with my health.
my world feels so complicated and big and demanding and exhausting.
and then trying to think about the 8 billion other people living lives.. many in countries where there are political wars or genocide or severe environmental damage etc.
its overwhelming.
Classical Ehlers-Danlos syndrome, pancreatic insufficienty, hemiplegic migraines
thanks for the suggestions ill add them to the research list!!
"I can't do this. my disability prevents me from doing this"
another disabled person: well I have to do this! have you considered just doing it anyways?
"I'm not sure you know what can't means and I also don't think you realize that I, too, have to do those things. I just.. y'know, can't."
Helping physically disabled people doesn’t mean manhandling us like we're pieces of luggage.
Ask how you can help, rather than going ahead and hauling us like sacks of human cargo. It's for both respect and safety reasons, by the way.
really struggling with this atm.
ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.
im exhausted. trying is exhausting.
disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)
what happens to consistency, to habits, when you have a dynamic disability?
i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.
you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.
for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.
for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.
and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.
then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.
understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.
marfan syndrome :)
okay! on the research list! 🩷
disabled people!!!
what are some illnesses/disabilities that youve never seen representation for and would love to see?
let me know in replies reblogs asks messages whatever suits you :3
Please understand that not every marginalized person is going to have a list of peer reviewed sources and accurate statistics proving the bigotry they face in their daily life and you sometimes just have to decide to believe people when they tell you they are suffering
absentmindedly doodling. i always have a nostalgic soft spot for the season 1 dynamics in winx club.
painted for a whole hour today :3 it felt great.
im so exhausted now though.
i have so much art i need to get out of my brain its all stuck in there while i cant do any 😭😭😭😭😭
this is officially my longest migraine. day 28.
i am beyond sick of this. mentally struggling with how reliant on my carer i have to be during migraines.
i can handle it when its only a few days but this long is a whole other world. i dont experience this level of dependance that often so im not really used to it still.
on day 5 of a migraine get me out of here
being unattractive or physically different/disabled DOES NOT equal being morally bad/evil. there is an atrocious amount of ableism that occurs when someone doesn’t look “normal.” and i am so fucking sick of it.
in media it is (almost) always the villains who are different/disabled. and media is a massive part of how people form their world views.
i want to mention arcane for example, because people seem to be confused about what good representation is. people praise the hell out of that show, and for good reason it has great things about it, but people told me it had good disabled representation. so i watched it. and while parts of the disabled representation is good.. almost all physically different/disabled characters are portrayed as bad/evil/villains at some point in their story (or all of it.) and then by the end of the show most of them are dead.
abled people i need you to understand that is not good representation. please look out for these tropes it happens ALL the time.
good representation includes different/disabled characters who are heroes and morally “good” too.
if you make all your villains physically different and none of them are heroes i hate you. i am so sick of this.
yes. yes. yes.
honestly i get so excited when i see someone switch over to the “i could never” response because so many people do the “lucky you, you get to be lazy” and that one just really hurts.
so when i see even a small step in the direction of understanding my life is not glamorous, even if its still a response i hate, i feel excited dkdhks
i really cannot understand how people see disabled life as this glamorised lazy life. i genuinely cannot wrap my head around this.
how could ANY of what i go through be seen that way i just dont get it.
i really cannot understand how people see disabled life as this glamorised lazy life. i genuinely cannot wrap my head around this.
how could ANY of what i go through be seen that way i just dont get it.
yea..
It’s hard not to feel alienated sometimes by your friends, even if unintentionally, as a physically disabled person.
“Oh, let’s go to this place!”
“How far away is it?”
“It’s only a three-minute walk.”
But you can’t do that three-minute walk. And it’s uncomfortable speaking up that you can’t do that three-minute walk. And maybe you’re well enough that day to push through it, but you pay for it afterwards. The worst part, your friends think they’re being accommodating because it’s such a short walk. However, a short walk to them isn’t a short walk for you. But eventually, you simply start saying no to hangouts because you don’t want to be a burden because you can’t engage in basic activities that are easy for everyone else.
Sometimes you do speak up, and you’ll ask something like, “Can we drive there?” and there’s always pushback. “Oh, it’d take longer to drive there than to walk” or “walking is good for you!” You regret mentioning anything at all; the discomfort and guilt linger.
Structural inaccessibility adds another layer to this problem. You’re forced to say no to countless hangouts that aren’t wheelchair-accessible. Even if you can walk, you might not be able to walk far enough to enjoy the planned outing. People start noticing you always say no, and before long, they stop inviting you at all. Maybe it’s better this way. It still feels lonely.
laughs at how its less than a day since i answered this and my number has already gone up again 👍🏻👍🏻👍🏻
IS THAT AN EXPENSIVE SOUND 😭😭😭😭
Just random stuff I find annoying