FadingPaperJellyfish

It’s the American government not allowing us to have over $2,000 at any given time without threatening to take away our only source of income. It’s still not having equal marriage opportunities, I cannot get married to my fiancée without my money being taken away. I bring in $750 a month from SSI. That’s not even enough for rent. (In case you didn’t know, $2,000 isn’t enough to live off of for a month, so to not be able to have it explains enough.)

Ableism is also taking away disabled parking and adding spaces reserved for cops. [That part is specifically aimed at Walmart.] Cops are abled, that’s how they can do their “job”. They’re even allowed to park at the very front of a building, they don’t need their own spaces.

Ableism is claiming a building is accessible when the “accessibility” features are broken or out of date, which can endanger mobility aid users.

Ableism is choosing to attack someone who doesn’t “look” disabled and shame them just because their disability/chronic illness is invisible; it is leaving notes on the cars that belong to disabled people who can walk, yet still need to park in the disabled parking space, that state that they’re “faking”, “going to hell”, or that they should be ashamed of themselves for “taking a spot from someone who actually needs it”. This includes the phrase, “But you don’t look disabled.”

Ableism is stopping autistic children from stimming, forcing kids with ADHD to sit still, infantilizing adults with down syndrome or other conditions because ableds assume that they don’t know what is going on around them.

Ableism is doctors not listening to their patients, the person who knows their body the best, due to medical racism, fatphobia, or misogyny.

Ableism is assuming every disabled person’s condition is the same, and that all treatments are a one size fits all; in reality, our treatment programs, the accommodations we need, which aren’t “special needs”, are all different and work with a case by case foundation.

There’s the PT/OT two or three days after the surgery to do things like put on pants and walk and go up stairs

If they went in through the side instead of the back, there’ll be the removal of a chest tube

Sitting up for the first time? Literal torture

You can’t even raise your arms over your head for at least a week or two

Can’t stand long enough for a shower either, chances are you’d have to use a shower chair which is, frankly, uncomfortable

Most of the time for the next couple weeks is just lying down, sitting up takes so much effort and hurts

Sometimes there’s random pain from the IVs? It was weird, like all my IVs were in my right arm but I kept getting weird shooting pain in my left arm anyway-

RIB PAIN. ESPECIALLY if they use part of your ribs for a bone graft; sometimes they’ll use an entire floating rib and part of the smallest rib

The annoyingness of the breathing thing to get your lungs and diaphragm working at full capacity, seriously like you have to use that thing for a couple weeks and it’s both annoying and sometimes hurts? Disgusting

The tenderness of the area around the scar and the numbness that extends further

Bending down for the first time weeks/months after is also torture- and even years after is still a bit if your back gets stiff

The constant want to move further than your new range of motion so you have to adapt to it

Vomiting for the first time- especially if it’s a handful of days later *cough* bc you had ice cream and then your mom made you drink gatorade *cough* is TORTURE. HORRIBLE pain

Then there’s the emotional(ish) part of it where everyone treats you like you’re completely fragile for weeks- which I mean, if you’re hit hard enough or fall and hurt yourself the hardware and/or fusion itself could be damaged but if it gets to the point where some people won’t even hug you it sucks

Muscle cramps in close to that side of your stomach and ribs when you sneeze to hard or something like that for literally basically forever

But then there’s the comfort part:

The people who help you through it

Who send you adorable animal pics to distract you

The friends who check in with you anytime you look like you’re in pain or sore

The people who don’t mind if you need to dip out early because you’re sore

The people who will give you a back/shoulder rub

The people who will make tea/a hot drink and sit with you, especially when you feel the need to lie down

people who make scoliosis puns

people who had spinal fusion surgery

people with current back braces

people who had back braces in the past

people who go to physiotherapy, massage therapy, and/or a chiropractor

people who have uneven shoulders, ribs, and/or hips

people who were born with it

people who developed it as a child

people who developed it as teenagers

people who developed it as adults

people with large curves

people with small curves

people with chronic pain

queer people who have scoliosis

poc who have scoliosis

neurodivergent people with scoliosis

intersex people with scoliosis

trans people with scoliosis

people with other physical disabilities on top of their scoliosis

people without other physical disabilities with scoliosis

people who's scoliosis significantly affects their life

people who's scoliosis doesn't affect their life much/at all

people who fall between the two

people who live in non-western countries with scoliosis

people who have limited access to healthcare with scoliosis

people with scoliosis who are open and proud about their curves and/or scars

people with scoliosis who are quiet and ashamed about their curves and/or scars (side note: you look awesome and your scoliosis doesn't change that!)

people with scoliosis who fall somewhere between the two

guys with scoliosis

girls with scoliosis

enbies with scoliosis

people of other genders that i haven't mentioned with scoliosis

people with lordosis

people with kyphosis

people with flatback syndrome

people with spina bifida

people with other spinal conditions not mentioned

i love y'all (/platonic) and you're doing great!

chronic pain

There is so much “positivity” surrounding the idea that you can do anything. No matter what. Regardless of chronic illness, mental illness or whatever else. You just have to put your mind to it.

And you know what? That’s bullshit. There are things we can’t do and we will often feel ashamed or harm ourselves trying.

Even if someone else with a similar experience can do something, it doesn’t mean you should automatically be able to. Even if you could do the same thing yesterday, it doesn’t mean you always have to be able to.

Sometimes you can’t do something.