#cripple punk
By the end of yesterday’s two hour shoot the muscle weakness I suffer from was manifesting clearly. In my face, in my feet that would not pick up from the floor, in my arms that shook as if 50lb weights were hanging from my wrists. I know I ‘overdid’ it when muscle weakness persists into the next day, as does the unignorable pain that indicates cellular dysfunction. Today I can barely move from where I sit to the bathroom when I need to go. I cannot sit upright without total support of my body, my limbs and my head. I’m unable to separate my arms or hands from my body as I type this; only my fingers themselves are mobile. The searing burn in my upper arms and hands as I haltingly and weakly stab across this tablet’s touch screen keyboard is deemed 'exercise intolerance’ in medical terms. I dislike this term and find it misleading. Most people would describe exercise as a workout, or at the very least a good paced walk for a few miles. But, as with many words, what have one meaning in common lexicon will have another entirely in medicine. 'Exercise intolerance’ is a broad term with much variance in application among disease processes. For me, it relates to the muscular and cellular dysfunction I experience.
Today, just 2-3 chews on soft bread or a hand to my neck to scratch elicits a lactate burn from the pits of hell in the deepest depths of the muscles that are trying to activate. Many will be familiar with a mild form of this burn: usually as a result from running too hard, too long, or really, too much of any intense exercise in too short a period of time. It is, after all, a natural process. Some even pride themselves on this burn; it’s an indication for them that they are working hard. Lactic acid is a byproduct resulting from mitochondrial cells (energy production cells) using alternate forms of fuel when the correct sources are depleted. It is backup processing. This waste product causes pain, but in nearly all human beings this lactic burn will resolve within a couple of minutes to an hour once the exercise is stopped. (Other forms of muscle pain are different and likely a result of small tears, so take longer to resolve).
As long as I’m able to remember I’ve experienced lactate burn from as little as good paced walking, any amount of running, or even any kind of yoga or other mild activity. Now, as my conditions have progressed, the fiery pain manifests from even the simplest of daily activities; brushing my teeth, cooking, walking even 100m, propelling my wheelchair. It can last for days if I don’t get the correct nutrition, hydration, have trouble getting enough oxygen, don’t sleep enough or deplete my energy stores too rapidly or for too long a time. This is the price I pay every day now. Related, but different is the muscle weakness; the only outwardly visible sign that anything is malfunctioning.
I’m utterly exhausted writing this. I have to rest, but I want to thank you all for the supportive comments, the messages, the love. I have a hard time replying consistently for obvious reasons, but I read everything and I thank you. For watching, for reading, for learning, for your support.
{please don’t remove my words}
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Trying on jeans. Painful, but necessary when you’ve lost 4 clothing sizes.
Why are dressing rooms some of the least accessible places in all of retail? Disabled people want to try on nice clothes too, fuckers.
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Android in Space. I’ve finally discovered a way to break the icy exterior of my Internist… Wear awesome space leggings. First time I think I’ve seen him smile. Thanks, Jeffie! Also, my Zak Smith shirt… One of my faves.
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Cripple Punk with all the angles, city, mountains and sea. Shorts & Scarves & sunny winters.
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pastel punk
[ID: Photo is a tweet from Wonder Cripple (twitter handle: @wonder_cripple). The tweet reads:
“When an abled person tells you you’re an inspiration, ask them why. Seriously. Ask them, and watch them rack their brains for an answer. They’ll understand the problem when they can’t come up with one.
I have done this before. It works.” END OF ID]
Real Talk: Abled people view disabled people as perpetual children. Change my mind.
ID: [Photo is a tweet from Wonder Cripple (wheelchair emoji) Twitter handle: @wonder_cripple]
The tweet reads:
Stop blaming terrible behavior on mental illness or disability. I don’t care who you’re talking about. I don’t care if it’s @realDonaldTrump or a school shooter. It’s fearmongering, and IT WOULDN’T EXCUSE THEM.
[END OF ID]
For anyone who’s interested, feel free to follow me on Twitter so we can talk activism on there too!
(reply or reblog with your handle so I can follow you back!)
@wonder_cripple
My faith in humanity died the day I had to explain ableism to a psychology professor.
Inpired by a social media post from @brightlotusmoon:
Just so you know, lacking focus or motivation does not make you lazy.
If you’re disabled and people claim to be inconvenienced by you, it’s not your fault and you’re not the problem.
Chronic pain is real.
Chronic fatigue is real.
Fibromyalgia is real.
Ableism is real.
Vaccines do not cause autism.
This has been a PSA.
Fellow disabled people, what does a good day look like to you?
I’ll start.
Today is a good day. I woke up happy to be alive and my pain level is at a 5 on a 0-10 scale.
I’m desperate.
PLEASE fill out my survey if you’re 18-29 years old: https://hofstra.co1.qualtrics.com/jfe/form/SV_brUSTiewxEWVyTk?Source=Tumblr
ANYONE IN THIS AGE RANGE CAN COMPLETE IT, DISABLED OR NOT.
It’s for my dissertation.
I wouldn’t be asking if it wasn’t important. I need 109 more responses.
US ONLY.
Thanks so much!
Why I will never be on board with the bullshit rationale for reopening schools right now.
I “needed to be in school”. They didn’t care.
My pediatrician had to write a letter for the school to grudgingly let me come back.
If you can kick up such an ableist fuss over a broken leg, you can keep kids and teachers safe during a deadly global pandemic. End of discussion.
Photo is a tweet by @wonder_cripple that says:
“When I was 12, I broke a leg. My school *insisted* my mom keep me home until it healed because I already needed 24/7 care as a disabled person. They labeled me a liability.
And you’re telling me schools are fine to open during a global pandemic?
OK.”

[ID: Photo is a tweet from Wonder Cripple (twitter handle:@wonder_cripple). The tweet reads:
“Please remember that accessibility means different things to different people.
I might need a ramp.
My blind/VI friend might need a transcription in Braille.
My deaf/HoH friend might need to lip read or use ASL.
Our needs are diverse. Respect them.” END OF ID]
Other people’s life hacks: Build DIY furniture out of your recyclables using only these 64 simple steps!
My life hacks: Wear scrub bottoms as pants! They’re as comfortable as pajamas, with twice as many front pockets, and with a nice shirt you can pass them off as slacks.
My heart goes out to every disabled person who works for a disability organization and has to deal with abled co-workers who care more about making things easy for themselves than helping disabled people. I’m sorry you have to think on a daily basis about how they must see you the same way.
oek:
Imagine a world where medical diagnostics specialists and disability services assessors were advocates instead of gatekeepers. Imagine their target being to make sure nobody who needs help slips through the cracks and doesn’t get it, rather than to make sure nobody who’s trying to “scam the system” slips through the cracks and does.
Scammers affect real disabled/sick people by taking resources from them. Also, many known fakers that have munchausen by proxy/attention seekers can get money from donation’s to pay for medical bills they don’t even have. They get trips to disney and expensive shit from make-a-wish and sympathy.
If every person isn’t checked when they claim they need disability assistence those that fake it have a easier time because they have “proof” and people will keep throwing money at them and wasting resources from real sick people.
You’re missing my point. My whole point was that even if there ARE people out there “faking” (which is way more rare than people seem to think it is - usually what’s perceived as a person faking is just a person whose disability you don’t understand), it would be better that those people are accidentally given resources they’re not entitled to than that any actual disabled person need those resources and not be able to get them. Proving your disability to the satisfaction of officials whose job is to try to keep people out unless they successfully jump through all the hoops would be a hard thing for most people to do, but it’s especially hard when *being* disabled in itself makes it harder to do all the running around necessary to gather what’s asked for. Because under the current model, the people in charge are not making it their objective to make sure every disabled person gets the help they need. They are focused instead on making people prove they are “disabled enough,” and a big part of that is not listening to people’s lived experiences, treating their word on their own bodies and lives like it’s worthless. Most of what we’re trying to get isn’t any kind of luxury, it’s boring necessities that we need just to survive and navigate the world but we still have to spend energy we don’t have appealing to agencies that make a point of denying people just to see if they “need it enough to fight for it,” and if you’re too sick to fight, you fall through the cracks. There’s something wrong with a system built on disbelieving disabled people as the default.
(Also, Munchausen’s is a real and serious mental illness in which people physically make themselves - or others, in the case of by proxy - sick, and those people need help. It’s not a word for “person on the Internet pretending to be sick” like people think it is.)
I hate stuff like this. Im literally in a wheelchair by order of my doctor. Youd think that would be “good enough” for the resources i need but nope. My disability benefit only went through after my doctor stepped in a told them i would end up DEAD without it. When my wheelchair broke? The only thing that lets me leave the house and actually function around the house? The benefit refused to cover it because i “wasnt sick enough”. We dont know yet if im terminal. I MIGHT BE TERMINAL and they still refuse to help me. This is what shit like this gets you.
This is exactly the kind of thing I’m talking about. Everything we need, we have to fight for. I had a similar experience with my own doctor, who is great, fighting so hard to get the right kind of wheelchair because insurance wanted to give me one that wouldn’t work for my condition because it was cheaper for them. Because you have to go through so many channels for everything, you find one person who will advocate for you but they have to refer you to someone else who doesn’t care or has an agenda of keeping numbers low. This happens all the time and just because some people get very lucky and don’t encounter it doesn’t mean it doesn’t exist.
oek:
oek:
Imagine a world where medical diagnostics specialists and disability services assessors were advocates instead of gatekeepers. Imagine their target being to make sure nobody who needs help slips through the cracks and doesn’t get it, rather than to make sure nobody who’s trying to “scam the system” slips through the cracks and does.
Scammers affect real disabled/sick people by taking resources from them. Also, many known fakers that have munchausen by proxy/attention seekers can get money from donation’s to pay for medical bills they don’t even have. They get trips to disney and expensive shit from make-a-wish and sympathy.
If every person isn’t checked when they claim they need disability assistence those that fake it have a easier time because they have “proof” and people will keep throwing money at them and wasting resources from real sick people.
You’re missing my point. My whole point was that even if there ARE people out there “faking” (which is way more rare than people seem to think it is - usually what’s perceived as a person faking is just a person whose disability you don’t understand), it would be better that those people are accidentally given resources they’re not entitled to than that any actual disabled person need those resources and not be able to get them. Proving your disability to the satisfaction of officials whose job is to try to keep people out unless they successfully jump through all the hoops would be a hard thing for most people to do, but it’s especially hard when *being* disabled in itself makes it harder to do all the running around necessary to gather what’s asked for. Because under the current model, the people in charge are not making it their objective to make sure every disabled person gets the help they need. They are focused instead on making people prove they are “disabled enough,” and a big part of that is not listening to people’s lived experiences, treating their word on their own bodies and lives like it’s worthless. Most of what we’re trying to get isn’t any kind of luxury, it’s boring necessities that we need just to survive and navigate the world but we still have to spend energy we don’t have appealing to agencies that make a point of denying people just to see if they “need it enough to fight for it,” and if you’re too sick to fight, you fall through the cracks. There’s something wrong with a system built on disbelieving disabled people as the default.
(Also, Munchausen’s is a real and serious mental illness in which people physically make themselves - or others, in the case of by proxy - sick, and those people need help. It’s not a word for “person on the Internet pretending to be sick” like people think it is.)
They aren’t focused on making people prove they are “disabled enough”. They are making sure people are not faking or asking for benefits for a mild illness or deficiency. If you worked as a builder and lost your leg you would need help since you wouldn’t be able to work as a builder anymore. If you lost a finger you can still work with many different jobs.
People with fibromyalgia for example don’t *usually* as far as i’m aware are eligible to benefits because it’s a illness that is not able to be proved through tests and is only symptom reported by the patient. So it’s very easy to fake it. Fibro isn’t a illness by itself, it is caused by something and if the cause is not found it is categorized as fibromyalgia. It could be something as simple as severe vitamin D deficiency for example that is fixable - so it isn’t something deserving of life long benefits.
I receive benefits because I have severe health issues - if you were rejected, chances are you don’t really need it. There are rare cases that people that need are rejected but this is far from being a common occurrence.
Yes, Munchausen’s is a mental illness but nobody should receive benefits for making themselves sick (or others). They need help, but if they commit fraud or injury other people they need to be responsable for their actions. Mental illness is not a excuse unless what you have is so severe you’re considered insane, which isn’t the case in Munchausen’s patients.
Fibromyalgia is actually a really good example, because it is a real and often debilitating illness that, yes, you can’t “prove,” it relies on doctors listening to and believing patients. There are several other chronic illnesses that are the same way, and many that now CAN be proven with tests but at one point couldn’t. The fact is that medicine is always evolving and things that are diagnosed clinically now might eventually be found to have markers that can be tested for if they develop the right test. That doesn’t mean that the people who have them now, when those tests don’t exist, should suffer.
I’m a disability activist so I don’t speak just for myself, I try to advocate for all disabled people. So please don’t assume that when I make posts like this I am complaining about my own experience. This isn’t sour grapes because an agency rejected me; this is a systemic problem that I can see where we function under a gatekeeping model rather than an advocacy one and I believe that’s the wrong tactic. You’re not going to change my mind about that.
I see a lot of ableism on your page, and yes disabled people CAN be ableist. I have multiple lifelong disabilities and also some recent health problems that have made things worse for me, and I do get help from a lot of places, but I also see people who need help turned away and I have a problem with that so I’m going to speak out about wherever I see it.
