insane-cripplepunk

[insane-cripplepunk]

the thing about disability is it really does sometimes boil down to "wow i wish i could do that" and then you can't. and it sucks.

[insane-cripplepunk]

I am pro-self-dx for a number of reasons however I am very tired of hearing from self-dx'd autistic people about how autistic people aren't oppressed and how neurotypicals are actually super niceys about our differences. You're self-dx'd, which means you have most likely never received professional autism-oriented behavioral intervention. If you were to receive such intervention, the oppression would be laid bare to you. Stay in your damn lane.

[insane-cripplepunk]

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Wheelchair and other Mobility Aid Stimboard

PT: Wheelchair and other Mobility Aid Stimboard

Not requested

My disability may be worsening, but I'm glad that so many have been so proud with their use of wheelchairs and other mobility aids. It gives me the confidence to advocate for what I need. I love you disability community.

Credits: x x x | x x x | x x x

[insane-cripplepunk]

self proclaimed schizoposter nervously typing '911' into their phone and hovering their thumb above the 'call' key as they hawkishly watch a disheveled guy at a bus stop make repetitive movements and ramble to himself

[insane-cripplepunk]

Today my therapist introduced me to a concept surrounding disability that she called "hLep".

[plain-text version of this post can be found under the cut]

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hLep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!

Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.

Plain-text version:

Today my therapist introduced me to a concept surrounding disability that she called "hLep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hLep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

P.S. Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!

Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.

[insane-cripplepunk]

OBVIOUSLY nobody should ever be abused and abuse is bad and abusers should not be coddled. I went through abuse myself, I know this

that being said. I don't think being a victim of abuse gives you the right to go around telling people that they remind you of your abuser for reasons they cannot control. it is unkind, unfair, and incredibly manipulative to treat other people this way. I don't care if it is because your abuser was an addict, or had a particular religious background, or had a particular disorder, or something else entirely. you cannot hold an entire group of people responsible for what happened to you

you are not morally obligated to spend time with people who remind you of your abuser. but you are morally obligated to treat other people with dignity and respect

[insane-cripplepunk]

[insane-cripplepunk]

For those not in the know, this is one of the Amanita mushrooms referred to as a Destroying Angel. Never, ever, ever, ever forage with an app. Especially for mushrooms.

[insane-cripplepunk]

A Man of Few Words

[insane-cripplepunk]

fellow narcissists, sociopaths, and psychopaths,

we're going to hear those words being thrown around a lot over the next few years. more than we already do, which is not an insubstantial amount. i want you to remember that you are not monsters, or fascists, or scum.

as more and more people throw around diagnoses they do not care to understand and words that they do not see as harmful, i want you all to remember that you are not alone and that the entire world is not against you.

there are people out there who care and understand and are not afraid. you are not alone, and you are not unloved.

dont let them make you fearful of yourself, you deserve so much better than that.

stay safe

[insane-cripplepunk]

notes for my impostor syndrome:

• no, it's not painful to walk for abled-bodied people

• no, healthy people don't usually use every chance they get to lean against walls or sit down

• no, ableds don't dream about shower stool

• no, ableds don't celebrate days when they're not in pain. because usually they're not in pain

• no, ableds don't want to stop walking mid-way, lay down on the ground, curl up and cry and whine from pain

• no, ableds aren't exhausted by their own bodies 24/7

[insane-cripplepunk]

I've been disabled for almost 29 years. Here's what I've learned.

Tablets sink and capsules float. Separate out your tablets and capsules when you go to take them. Tip your head down when taking capsules and up when taking tablets. Liquigels don't matter, they kinda stay in the middle of whatever liquid is in your mouth.

If your pill tastes bad, coat it with a bit of butter or margarine. I learned this from my mom, who learned it from a pharmacist.

Being in pain every day isn't normal. Average people experience pain during exceptional moments, like when they stub their toe or jam their finger in a door, not when they sit cross-legged.

Make a medical binder. Make multiple medical binders. I have a small one that comes with me to appointments and two big ones that stay at home, one with old stuff and one with more recent stuff.

Find your icons. Some of mine include Daya Betty (drag queen with diabetes), Stef Sanjati (influencer with Waardenburg syndrome and ADHD), and Hank Green (guy with ulcerative colitis who... does a bunch of stuff). They don't have to be disabled in the same way as you. They don't even have to be real people. Put their pictures up somewhere if you want; I've been meaning to decorate my medical binders with pictures of my icons.

Take a bin, box, bag, basket, whatever and fill it with items to cope with. This can be stuff for mentally coping like colouring books or play clay or stuff for physically coping like pain medicine or physio tape.

Decorate your shit! My cane for at home has a plushie backpack clip hanging from the end of the handle and my cane for going places is covered in stickers. All of my medical binders have fun scrapbooking paper on the outside. Sometimes, I put stickers and washi tape on my inhalers and pill bottles. I used my Cricut to decorate my coping bin with quotes from my icons, like "I've seen enough of Ba Sing Se" and "I need you to be angrier with that bell".

If a flare-up is making you unable to eat or keep food down, consider going to the ER. A pharmacist once told me that since my eye flares can make me so nauseous that I cannot eat, then I need to go to the hospital when that happens.

Cola works wonders for nausea. I have mini cans of Diet Pepsi in my coping bin.

Shortbread is one of the only things I can eat when nauseous. Giant Tiger sells individually-wrapped servings of shortbread around Christmas or the British import store sells them year-round. I also keep these in my coping bin.

Unless it violates a pain contract or something, don't be afraid to go behind your doctor's back to get something they are refusing you. I got my cardiologist referral by getting in with a different NP at my primary care clinic than who I usually saw. I switched from Seroquel to Abilify by visiting a walk-in.

If you have a condition affecting your abdomen in some way (GI issues, reproductive problems, y'know) then invest in track pants that are too big. I bought some for my laparoscopy over a year ago and they've been handy for pelvic pain days, too. I've also heard loose pants are good for after colonoscopies.

Do whatever works, even if it's weird. I've sat on the floor of the Eaton Centre to take my pills. I've shoved heating pads down my front waistband to reach my uterus.

High-top Converse are good for weak ankles. I almost exclusively wear them.

You can reuse your pill bottles for stuff. I use my jumbo ones to store makeup sponges and my long skinny ones to hold a travel-size amount of Q-Tips.

Just because your diagnostics come back with nothing, it doesn't mean nothing is wrong. Maybe you were checking the wrong thing, or the diagnostic tool wasn't sensitive enough. I have bradycardia episodes even though multiple cardiac tests caught nothing. I probably have endometriosis even though my gynecologist didn't see anything.

You can bring your comfort item to appointments, and it's generally a green flag when someone talks to you about it. I brought a Squishmallow turkey (named Ulana) to my laparoscopy and they had her wearing my mask when I woke up. I brought a Build-A-Bear cat (named Blinx) to another procedure and a nurse told me that everyone in the hall on the way to the procedure room saw him and were talking about how cute he was. Both of those ended up being positive experiences and every person who talked to me about my plushies was nice to me. If you don't feel comfortable having it visible to your provider during the appointment, you can hide it in your bag and just know it's there, or if you're in a video appointment, you can hold it below frame in your lap.

Get a small bucket, fill it with stuff, and stick it in your bed (if you have room for it). I filled a bucket with Ensure, juice boxes, oatmeal bars, lotion, my rescue inhaler, etc. in October 2023 in anticipation of my laparoscopy and I still have it in my bed as of January 2025.

If your disability impacts your impulse control (e.g. ADHD, bipolar disorder), you should consider setting limits around your spending -- no more than X dollars at a time, nothing online unless it's absolutely necessary, and so on. Or, run these purchases by someone you trust before committing to them; I use my BFF groupchat to help talk sense into myself when I buy stuff.

Feel free to add on what you've learned about disability!

[insane-cripplepunk]

Medical schools don’t teach their students well about disability, which can have negative effects for both disabled patients and disabled medical students, according to a new study published in the Journal of General Internal Medicine.

Researchers found that medical school curriculum often treats disability as a problem, leading students to make negative assumptions about the health and quality of life of people with disabilities. That makes them ill-prepared for treating disabled patients.

The overall attitude also results in fewer disabled people becoming doctors.

“Doctors do not know how to care for people with disabilities because they never learned,” lead author Carol Haywood, PhD, assistant professor at Northwestern University’s Feinberg School of Medicine, said in a press release.

“Ultimately, our work reveals how medical education may be playing a critical role in creating and perpetuating ideas that people with disabilities are uncommon and unworthy in health care.” (Read more at link)

Imagine if they just fucking listened to us.

[insane-cripplepunk]

Y'all need to get a lot less comfortable telling disabled people what they can and can't say/feel about their disability.

"My disability does not make me unworthy of life, love, or happiness."

and

"I don't like being disabled and would like to no longer be disabled."

Are two statements that can coexist. Fuck you if you want to try and police people's perspective of their own bodies.

[insane-cripplepunk]

you can always give your blorbos mobility aids btw . you can always make them disabled its always morally correct

[insane-cripplepunk]

99% of "mysterious disappearances" esp of people in their 20s who start acting weird for 48 hours and then vanish are not mysterious, thats just when a lot of reality-obliterating mental illness tends to kick in and it's pretty easy to get a short circuit in your brain that makes you go family guy death pose in joshua tree national park. it's not any less tragic, it's just a documented phenomenon and not particularly predictable. its a big reason the medical advice is for people with a family history of schizophrenia to completely avoid weed and psychedelics. "people just go crazy sometimes" is a principle of human health that used to be a lot more accepted prior to the american midcentury and to a certain extent thats a healthier way to conceptualize and prepare for the risk, as opposed to the modern assertion that anyone acting weird is dangerous and broken forever.

[insane-cripplepunk]

Mental illness doesn't excuse someone being an asshole. But assholes STILL deserve mental help. It doesn't matter how much you hate them or how unlikable they are. They are still a person.