Rowan, They/it

19, they/it, hEDS POTS and FND haver.

[cowsabungus]

Obvs not all access is wheelchair access I'm just a wheelchair user so hence it centring around wheelchair access

(Inspired by Ruth Martin on Insta go check them out they're super cool and amazing)

ID in Alt Text

[cripplepunk-salad]

It happened. My worst nemesis.

I ran out of advil and didn’t realize until I desperately needed it.

[shamebats]

"it's just stress" oh thank god, it's just the silent killer that slowly kills you, perfectly harmless, no need to worry

[oscarwildeboytoy-deactivated201]

Hey, unpopular opinion, apparently. But people don’t just “have pain for no reason” doctors say this all the time (especially to women and chronically ill people) and the truth is, Thats literally not possible. Even if your pains are psychosomatic (a word I hesitate to even use because of the way its used so often) there is a reason you are having those pains whether its mental illness, abuse, etc. If your doctor consistently tells you that “well some people just have pain for no reason” get a new doctor. That’s a doctor who is not going to give a shit what your actual symptoms or experiences are.

[kamorth]

I just wanna add to clarify the psychosomatic thing.

That word DOES NOT MEAN you’re making it up. It doesn’t mean you’re imagining the symptom. What it means is that the symptom ISN’T DIRECTLY CAUSED BY ANY OF THE THINGS THAT WOULD NORMALLY CAUSE IT.

I fought to get a PCOS diagnosis for 2 and a half years. For the ENTIRE time I was fighting, I was dealing with 3 cysts that were not going away by themselves and eventually required surgery to remove. At one point close to the end of the battle, I suddenly went blind. I was visiting my parents and was standing on the veranda looking out over the tree we had planted in memory of my dog and suddenly I got one of the shooting pains that I was quite frankly used to at that point and my vision started to go dark. It was like the sun was setting while being completely hidden behind storm clouds but it was 2pm in the middle of Summer on a clear day. Within about 30 seconds I couldn’t see ANYTHING. I was 27 years old and I was screaming for my mother.

My mum raced me to her doctor (he was a 15 minute drive away as opposed to 45 minutes to the nearest hospital) and he quickly worked out that there was nothing wrong with my eyes and what had happened was totally unrelated to them. Then he said it was psychosomatic and I freaked out, yelling that I was NOT making this up and I definitely wasn’t imagining it. Very quickly he calmed me down and said he believed me and I had misunderstood. He explained that whatever was going on with my abdominal pains (he suggested PCOS which I hadn’t even heard of at that point) had been ignored for so long that my body was starting to do things other than the normal pain response to try to draw my attention to the problem. My sight going was my body basically jumping around in front of me going “HEY ARE YOU EVEN LISTENING TO ME HELLLOOOOOOO??????”

He gave me some prescription strength painkillers and my sight started to come back as soon as they started to kick in. About 45 minutes after it started I could see well enough to walk around without help and within a day and a half I was back to normal. On top of that I finally had a scan booked to figure out what the hell was causing all the pain.

Psychosomatic symptoms are NOT imagined or fabricated or happening for “no reason”. Experiencing them DOES NOT make you a liar. It makes you someone who has been battling with something serious for so long that your own body has started to get impatient with you.

[oscarwildeboytoy-deactivated201]

I completely agree. Thank you for sharing this.

[antique-scarecrow]

Psychosomatic symptoms are literally your body flipping random alarm switches just to get any alarm blaring because you’ve been ignoring the regular ones

[chronicillnesshumor-deactivated]

[behaviornerdwithahat]

In case anyone finds it helpful because mobility aids are horrifically expensive and inaccessible…

And for those people who have access to mobility devices but might benefit from a second chair they can abuse without risking expensive damage…

Erik Kondo has made a website, Open Source Innovations, that details plans for DIY wheelchairs. These wheelchairs can be made from common materials like wood, plastic, and pvc. They are lightweight and can be custom fit to the user allowing from the same degree of movement you would get from a custom chair. And they are durable and easily repairable. (he has been stress testing his latest design by dropping it down stairs, dropping it out of a car, launching it across a driveway, and throwing it off a deck). Its 12lbs and I think he said its was in the $200 ish range for parts.

He also is working on cheap, open source, accessible designs for beach chairs, off road chairs, motorized attachments (think smart drive), and so on. Plus he skateboards in his wheelchair. Cool dude, helpful info, pass it on.

[sumi-sprite]

It's incredibly sad people have to resort to this, but it's a damn good resource. Use it. Spread awareness. Maybe one day people with physical disabilities won't need DIYs like this. But until then, reblog and share.

[animentality]

[sirartwork]

[bongwaterer]

[gigglepuffpixie]

[cripplepunk-salad]

Thinking about how service animals do SO much good, and yet if you have a service animal you get treated awfully.

Like this!!! This is not the first time I have heard about a service dog correctly alerting someone who isn’t there owner, and this in turn helps people learn of their health conditions.

If anything, this should make people WANT to have more service animals in public. Service animals save lives but you’ve probably never thought about you or your loved ones life being saved by a service animal.

Isk I’m just thinking out loud here, of course it absolutely should not need any more justification than “service dogs provide a better quality of life to some disabled people” going out in public with a service dog, when you think about it, is a gift to the public.

Treat service animals with respect, treat their owners with respect, disabled people are just trying to exist.

If you see an animal in a service vest and your first thought is that it’s fake, or that that animal doesn’t belong there, this post is directly to you. Mind your damn business, nobody owes you ANY information, one day your body will fail. One day you will deteriorate.

One day you could get an early diagnosis and life saving treatment just by being near a service animal. One day you might become disabled and have a service animal and get denied access to public spaces for it.

It’s sad that people don’t give a shit about others unless you show it harming themselves, but that’s just the only way some people listen. And if that STILL isn’t enough for you? I’ll see you down in hell one day.

[cericertain]

someone; hey guys im disabled and i have a service dog that helps me with X Y and Z

random asshole: yea but are you even diagnosed wih any of this?

why to able bodied people feel so entitled to stupid questions? like they don't actually care about us getting rights but they care sooooo much about weeding out 'fakers'..

you help nobody by constantly asking people if theyre reallyyy disabled. sure, YOU only asked that person once but do you really think a disabled person wants to be asked dumbass questions in bad faith by every 5th person? jfc

[urbancripple]

If You’re Gonna Make Something Wheelchair Accessible, Don’t Make it a Thing

Here’s some examples awkward accessibility being a thing:

Your at a hotel that has a lift to get you from one sub-floor to another, but the lift can only be unlocked and operated by one specific person that the hotel now has to go find. Sure, they’ve made the entrance to the sub-floor is accessible, but now it’s a thing.

The buses are wheelchair accessible but the driver has to stop the bus, take 30 seconds to lower the goddamn ramp, move passengers out of their seats, hook up the straps and then secure you in the bus. Sure, they’ve made the busses accessible but now it’s a thing.

The restaurant has an accessible entrance, but it’s past the trash room and through the kitchen. Sure, the restaurant is accessible, but now it’s an insulting thing.

Here’s some great examples of accessibility not being a thing:

The train to the airport pulls up flush with the platform. I board with everyone else and sit wherever the fuck I want. Riding the train is accessible and not a thing.

In Portland, I press a button the side of the streetcar and a ramp automatically extends at the same time the door opens. I board in the same amount of time as everyone else. This is not a thing.

I get that it is difficult to design for wheelchair accessibility, but folks need to start considering the overall quality of the experience versus just thinking about meeting the minimum requirements.

[urbancripple]

7 years later and it’s still true.

[p0is0n-is-th3-cur3]

Let's talk about what I like to call ranch bottle inaccessibility (inspired by wrestling with a ranch bottle to get the seal off) (please tell me there's a real name for this) which is inaccessibility with packaging. Ten thousand rubber bands on toy packages, freshness seals that are impossible to get off, water bottle caps (fuck water bottle caps). They're so hard for disabled people (and children at that, why can't kids open their own toys without help?). It's pissing me off. Having to have help opening water bottles, using can openers, destroying my teeth since I was little to open toys and candy packages.

[cripplepunk-salad]

Staring and considering sending this to my sister.

EXCUSE ME TUMBLR HELLO WHERE THE FUCK DOD THE POST I WAS ABOUT TO REBLOG GO?!?!

[cripplepunk-salad]

Saw a new physiotherapist yesterday and I just have to say that it renews some of my faith in humanity to meet someone who just GENUINELY wants to give the best care and doesn’t view himself as smarter than you and THIS GUY IS A PRACTICING PHYSIOTHERAPIST DESPITE BEING WAY OVER QUALIFIED!!! He’s a qualified scientist with a PHD and I believe he’s also a qualified doctor?! And despite being the most overqualified person on my medical team I have worked with he treats me more like an equal than anyone else!!!

He explained EVERYTHING in depth while going through exercises/consultation. I’m autistic and a very literal thinker- And after just ONE session he’s helped me achieve understanding of what I’m supposed to be doing more than anyone else. AND he emails me notes reviewing everything from the appointment-

And he doesn’t try to oversell his skills and “comfort” me that it’ll get better. He’s real about it. ‘No you can’t be fixed but let’s strengthen your muscles because they need to work harder to stabilize your joints. Let’s work on exercises to teach you how to properly walk and move without damaging your joints’ he’s on the same level as me. No pity, no false hope and rose coloured glasses, but not allowing me to give up either, exactly what I look for.

It’s almost too bad that I’m only at this hospital for one more month because this guy is amazing. I’m definitely going to be making the most out of this month. We’re going to go over everything with my hands and writing/drawing and all that stuff next week :D so hopefully I can draw without causing lots of pain.

[chronicillnesshumor-deactivated]

[cripplepunk-salad]

Guess who went fucking ROCK CLIMBING yesterday. I think I may be bedridden.

[fibromyalgicaf]

It's strange how, after a while of living with fibromyalgia, I have to regularly remind myself of what healthy actually feels like.

I have to remind myself that most people don't experience pain every day.

I have to remind myself that going to the park for an hour is not a big outing.

I have to remind myself that most people don't have to decide between cooking and showering.

I have to remind myself that most people can achieve more than one thing a day.

After 5 years, what I see as my baseline has distorted. It's so easy to slip back into old patterns, to try to do more than I have the capacity for, to get angry at myself, to push myself too hard.

So I have to remind myself to be gentle and patient, to pace myself, to set boundaries, and to ask for help.

[fibro-memes]

[cripplepunk-salad]

Fucking real 😭 I just start crying from it sometimes even if it’s just a low pain day

[j4k3we3b3r]

If I say "my distress is from physical symptoms", my distress is from physical symptoms.

If I say "I don't need to see my psychiatrist, I need to see a doctor" I don't need to see my fucking psychiatrist.

If I say "I'm crying from pain", it means I'm crying from pain.

Just because I am mentally ill does NOT mean you can blame my physical disabilities on my mental ones.

THIS POST IS ABOUT PHYSICAL DISABILITIES. DO NOT FUCKING DERAIL. [pt: This post is about physical disabilities. Do not fucking derail.]

[tavalen]

disability advocacy went wrong when it became about inspiration porn and “differently abled” and savants. its incredible that that guy with no legs did a triathlon but your sister with no legs will not and she doesnt need prosthetics or five hour training days to deserve respect and compassion and accommodations. its incredible that that autistic guy can look at a city from a helicopter for an hour and then draw the entire detailed skyline from memory when he lands but your autistic friend cannot and they dont need to have a special Autism Power to deserve respect and compassion and accommodations. 

activism framed around “we are just as CAPABLE” means that when people genuinely are less capable they are left behind. activism framed around “we are just as WORTHY” is fundamental to radical compassion.