neetpunk - Tumblr blog

[neetpunk]

Wow given how many people have reblogged it this must be a very funny TikTok! Too bad it just appears to be a person's face for 20 seconds and there's no captions.

TikTok may have endless faults but it really is good about supporting captions, which makes it all the more infuriating when people don't use them. Or worse, use them to just introduce the setting and then NOT CAPTION THE FUCKING DIALOGUE WHICH IS THE DAMN POINT

[neetpunk]

shout out to every disabled person with a rare condition. to people who's condition doesn't have a Wikipedia page. people who have a condition so underresearched there's no developed treatment. someone i knew has a condition which has been recorded in fewer than 100 people worldwide. i don't even want to say the name of it because it's a privacy concern. and it's not limited to like this 1 guy i knew. it can be isolating having to keep quiet about your condition because it's so rare. it's isolating that no disability positivity posts has ever named your condition. or being considered a medical anomaly. it's especially important for the autonomy of these people that disabled people don't have to disclose all/any specific disabilities we have

[neetpunk]

"op I just don't understand why you don't want Evil Piece Of Shit Disorder on your medical records"

[neetpunk]

Don't call the cops on a mentally ill person in crisis. Ever. They're far more likely to traumatize and hurt us than actually resolve the situation. No matter how worried you are, involving cops just isn't safe

[neetpunk]

Accessibility takes too goddamn fucking long.

My brother was paralyzed in October 2023. We got him home from the hospital (in Texas, when we live in Iowa) in a clunky old hospital chair. He hated it. He was scared and angry and in pain and his life had just changed forever and he couldn’t do anything for himself in that wheelchair. His first goal (aside from learning how to transfer) was to get a wheelchair. My family was lucky enough to afford one so we thought it would be easy enough. Nope.

We couldn’t buy him a wheelchair. He needed a prescription. For a wheelchair. A doctor had to examine him and declare him in need of a wheelchair. It wasn’t good enough that he had scans and tests showing tumors cutting off his spinal cord. He needed his primary care doctor to examine him during a physical and write a prescription. He was making 2-4 transfers a day, tops. He had no energy to get to a doctor. Home health was in and out every day. He had no time to get to a doctor. He didn’t get a prescription for almost a month. Then it had to go through insurance.

We asked if we could skip insurance and just buy a wheelchair for him. Nope. They wouldn’t sell us one, not even at full sticker price. It needed to be approved by Medicare. We ordered a wheelchair, a nice one, a good shade of green, sporty, small. It would let him move around the house. He would be able to cook, to reach drawers and get stuff from the fridge and brush his teeth and put his contacts in at a sink. We were told it would take awhile, maybe two months. Silently we all hoped he would be around to see two more months.

He went on hospice care on a Saturday in March. On Monday, I was calling his friends to come see him before he died. I got a call on his phone. It was the wheelchair company. They were about to order his wheelchair, she said, but there was an issue with insurance— had he stopped being covered by Medicare? Well, yes. When he started hospice care, he got kicked off Medicare. The very nice woman I talked to told me to call her if he resumed Medicare coverage so she could order his wheelchair. He died less than 12 hours later.

We ordered that chair for him in early December. Medicare didn’t approve the order until March. He was dead before they got around to it. He wanted that fucking wheelchair so badly. The only reason he had any semblance of independence and any quality of life for the last five months of his life was because the wheelchair company lent him an old beater chair, a very used model of the chair he ordered. If I could go back and change one thing about his end-of-life, I would get him his dream wheelchair. He told me again and again he couldn’t wait to get it, so that he could feel like a person again. He made the best of what he had with that old beater chair, but it still makes me mad to this day. He was paralyzed. He needed a chair that afforded him dignity. We had the money for it. And yet, we were left waiting for five months, for a chair that wouldn’t even get ordered until the day he died.

[neetpunk]

‘we support all people with disabilities’ are you normal about people being disabled because of being fat

[neetpunk]

The real problem with people speaking to wheelchair users as if they are developmentally/cognitively disabled is not that they think that (though that is a weird assumption to make) its how they treat us because of that assumption. Talking to someone like a baby or talking to people around them about them instead of to the person is the problem. That is not okay to do even if they are developmentally/cognitively disabled. People with those disabilities are not children and should not be talked about/to like that. Talk to the person. Simpler language is not the same as baby talk and cooing. Infantilisation is the problem. Assumptions are the problem. The issue is that they do it because they assume that we are mentally disabled and think that it's okay to do it because of that.

[neetpunk]

I'm wishing a very Happy Pride Month to all the queer people who:

are disabled

are chronically ill

can't celebrate for health reasons

disability gets in the way of their gender representation

disability got in the way of a relationship

don't have anyone to celebrate with

have homophobic caretakers

Happy Pride Month to all disabled queer people

[neetpunk]

the number of jobs that disabled people could do with no problems if it weren’t for the way they would need to do it being deemed unprofessional is sooooo. 😐

[neetpunk]

reality of be higher support needs n have someone help for me is

wish able buy things whenever want. buy base on whim sometimes. spend a lil too much regret a lil sometimes.

wish able buy things don’t want other / carer see.

wish able own thing don’t want other / carer see.

wish able go toilet middle of night without worry reveal am still up late n get scold about it

wish able do thing spontaneous.

wish not need discuss own life options with other people.

wish not need other people help everyday cut up food for own pet.

wish able tell carer off n not have it be awkward next task shower naked. or worry if it mean they withhold care.

wish able clearly communicate what want n not want n like n not like n need n not need. wish able be easily understood with communication already have.

wish not be paint as bad person terrible temper selfish ungrateful when overwhelm overstimulate scream throw thing be visibly upset bc can’t hide because not able communicate & keep be misunderstood n that has become trigger

wish able ask help without “you need help with this basic of task?” sentiment

wish able exist without hear “want your disability gone but it’s all for you want you better life (n apparently that only way get it) but i accept your disability i promise”

wish able do bad thing have lil dignity of risk have lil privacy

[neetpunk]

Etna, my fire chariot ❤️‍🔥

Image description, provided kindly by @blatantescapism

[Image description: four photos of the same wheelchair, customized in a badass, bright, and bold Fire theme. The wheel spokes are done in alternating red, orange and yellow; they probably look amazing in motion. The frame is black and red, with hot rod style airbrushed orange flames. The back support cushion is covered with black and red fire-patterned fabric. The back of the cushion has a punk patch, held in place with safety pins. The patch is hand-embroidered with the image of a person with spiky hair, racing fast, while flames shoot out the back of their wheelchair. All together, the look is fierce and fun in a “just try and stop me” way. End ID. /]

[neetpunk]

shoutout to everyone with forget disorders (adhd, DID/osdd, ptsd/c-ptsd, asd, dementia/alzeheimers, schizophrenia, other psychotic disorders, major depressive, chronically ill/phys disabled people with brain fog, people with long-Covid, natural memory degradation, and etc.)

[neetpunk]

i wish people could be less “all or nothing” when it comes to accessibility efforts. by that i mean, of course it’s important that everything be made accessible. but i feel like some people get caught up in that mentality and decide “well, i can’t possibly make everything around me accessible, so i’ll do nothing instead.”

writing one image description is better than writing none. writing a very brief image description is better than writing none. providing transcripts for new episodes of your podcast moving forward is better than never providing any at all. making something slightly more accessible according to your own ability and resources is so, so much better than doing nothing!

[neetpunk]

idk i think a lot of people sort of build up schizo-spec diagnoses in their head as this example of a "clearly biomedical disease that is the scariest possible example of mental illness that is always a crisis no matter what." and i'm not going to sit here and say that schizoaffective is always pleasant to live with, or pretend that it's something that I can manage perfectly-it does cause me distress a lot of the time, and makes some things very difficult. but for me, psychosis is by far not the most difficult symptom i have to deal with, compared to some of the other things that have brought me distress. And yet it's always the symptom that is reacted to with the most fear, confusion, and disgust by other people. I hate it when people generalize psychosis as always and inherently and forever a crisis, and ignore the fact that everyone who experiences psychosis is going to have their own experiences, perspectives on how it impacts them, and that treating psychosis as a super scary, inherently dangerous symptom is incredibly stigmatizing and prevents us from receiving support and care from our communities.

idk. i just really wish people would realize that for some people, psychosis can sometimes be a neutral or even positive experience (i've had some incredibly lovely psychosis experiences), and that by positioning psychosis as a "super scary disease that has no quality of life" and only offering carceral solutions, it perpetuates a pattern where we get continually pushed into harmful treatments. Instead of a situation where our autonomy is respected, where we're offered a wide variety of treatments from meds to therapies to peer support like Hearing Voices Network to material community based support and where we're allowed to define our own experience of psychosis based on how it actually affects us. like, i don't want to deny that psychosis is often distressing for many of us--but I do think we have the responsibility to evaluate where we've learned about psychosis, what societal messages we've internalized about psychosis, what kinds of knowledge about psychosis do we not have access to, and just actually think in depth about how our biases impact how we communicate about psychosis.

[neetpunk]

[neetpunk]

You do not have the right to touch someone's disability aid without asking, whether that aid be a wheelchair or an AAC device.

"It's just a tablet, though." No, it is not. It is my voice. Touching or moving my device without my permission is like touching my mouth without permission, it's weird, gross, invasive, and rude. Stop.

Pushing someone's wheelchair without permission is like picking them up and moving them out of the way eithout permission, its weird, invasive, gross, and weird. Stop.

[neetpunk]

update: it's been occupied