It Really Sucks That Structural Ableism Makes It Hard For Disabled People To Connect In Person Because

I wish health professionals understood that because I am disabled and in pain so much it takes a toll on my mental health...

that doesn't mean I have somatic symptom disorder

thanks for coming to my Ted talk

being a disabled environmentalist is hard.

i care so much and i wish i could aim for things like zero waste. but i just cant, doing something like that would be ignoring my health needs.

its quite isolating, because i try to find tips and environmental swaps but often they just arent possible for me to use/do and then i feel guilty for that.

even though i know its not my fault and i cant help it, it just triggers my inner ableism and i blame myself for being this way.

okay but why are so many medical professionals focused solely on getting their patients back to their jobs and not actually helping the patient feel better. like you will be literally unable to digest food or eat or do anything and they'll be like "that's not good we gotta get you BACK to WORK!!!!!!!!" and so they drag their heels and take up a bunch of time and give you treatments that don't work or take forever to give you ones that do and when you tell them. hey i still don't feel good the first thing is "BUT YOUR JOB!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"

fuck my stupid job. i'm dying. i'm a person not a walking job. help me. a lot of medical professionals will refuse to do their job and instead lecture you about being unable to go to your job instead. unreal.

cries its so beautiful

hello to my physically disabled friends. if you, like myself, spend a lot of time in bed and stick to one particular spot it might be worthwhile to see if your mattress needs rotating. i got mine shifted and it became immediately obvious that it had developed an indent and wasn't supporting me well. i could feel the difference immediately after lying down

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.

IS THAT AN EXPENSIVE SOUND 😭😭😭😭

Just random stuff I find annoying

if invulnerable means i dont feel the affects of my chronic illnesses, then i would probably do something super cool and crazy.

id clean my house.

30 whole minutes a month of pain/fatigue free cleaning??? do you know what i could accomplish??? id be unstoppable. maybe id also do a cartwheel or smth for funsies

If you could become immortal and invulnerable for 30 minutes once every month (it has to be all at once, you can't chop the time into smaller segments and use minutes separately), what fuckery would you commit?

"If tampons should be free, then so should my diabetes meds."

Yes? Yes they should be? Your life-saving medication that you need in order to live for a condition you were born with should be given to you at no cost?

natasha lyonne’s movies/shows <3333

thats all