CripRevolution

ID requested - low spoons

The disability system is ableist, causes harm, and even kills disabled people.

Ableism. Able-what? What is that? We have so many -isms, why are we so worried about being politically correct? *scoff*

The people who hurt autistic people the most are the people who care the most. I know I just bothered a lot of readers, but there's a lot of unlearning and relearning to be done, so set your discomfort aside and sit with what you're about to read before a gutteral rejection of that statement.

People who have ableist ideas, do ableist things, teach ableist methods, etc. are not bad people. We all have ableist ideas. Yes, even you. Me, too.

Ableism is not usually an intentional abuse of a disabled person, and it is usually the result of a well meaning person or organization that "didn't think of it that way". We all experience the world through a filter of our own experiences, and when people have only experienced the world from their own perspective, it can be tough to understand how circumstances impact someone who lives a different experience. We could pathologize this and use terms like "theory of mind", but that isn't what I do here, so we're just going to say "I didn't think of it that way." And that is exactly why it's so important to ask disabled people about their experiences and needs. Because disabled people have "thought of it that way."

Ableism is not providing opportunities for growth and success, or not presuming competence.

Ableism is not listening to a disabled person when they explain or request their support needs.

Ableism is talking about a disabled person as if they can't hear or understand us, or we speak for the person without first having listened to the person, or if they'd rather speak for themselves.

Ableism is limiting access to information or to the disability community.

Ableism is an event that does not have a clear directive on how to request accessibility.

Ableism is systems that don't allow for accessibility because of bureaucracy or set procedures that have no wiggle room for accommodation.

Ableism is assuming that a person's disability is a flaw, or using their disability to dismiss, insult, or degrade the way they experience and interact in the world.

Ableism is loving the person but hating their neurological classification.

Ableism is calling someone rude for not being able to or not wanting to speak, or tone policing the things that they do say.

Ableism is having a negative perception of a group of disabled people because you had an unpleasant interaction with someone, or because you don't agree with them.

Ableism is denying agency or autonomy, not allowing disabled people to make decisions about their own lives or bodies.

Ableism is denying a disabled person's rights to accessibility, because you want them to be able to do something, or because "the world won't change for them."

Ableism is disclosing or exposing a disabled person's private medical information, sharing meltdown videos, potty pictures, etc.

Ableism is expecting that a disabled person has access to support staff, which alleviates your responsibility to provide accessibility.

Ableism is passing judgment on people, not knowing their disability status, and assuming they can do something because you can do something.

Ableism is assuming that someone has a support in place so that they are able to do something that you think they should be able to do.

The vast majority of people have good intentions, but they just "haven't though of it that way" because that isn't the experience they've had in the world. That is why it is so important to listen to disabled people on the topic of our disability. It is not because we have all the answers (we don't), and it's not because we don't appreciate or want your support (we do), but we have spent our entire lives "thinking of it that way". So when we talk about something being ableist, it is not an evaluation of someone's character, it's an identification of discrimination, a barrier, or support need. And sometimes a support need is something as simple as validation and acceptance.

Ableism doesn't have to be intentional in order to be harmful. So if a disabled person says, "hey, that's harmful," please listen. That's how you show your character, that's how you demonstrate that you're a good, caring person.

The USA has never cared about disabled people. The system is designed to be ableist and harm disabled people. We deserve better.

Part 2 in the comments

Yesterday, I reshared an old post that felt important. It talked about my misperceptions about Brooke “disengaging” or, as I described it then, “being in her own world.”

In the comments, I shared a second post, and that one feels important too. Because it explains that those aren’t words that I would choose anymore, and more importantly, why. This is what I wrote …

Friends, there’s something I’d like to talk to you about.

I’d really like us to stop saying that autistic people are “in their own worlds.”

I understand why it feels like it makes sense. I really do. I said it myself for a really long time. Heck, we used to literally say that we’d “lost Brooke to Brooke Land again” when she’d appear to zone out or become disengaged with what was happening around her.

(Note the words “appear to” in that last sentence. Hold on to those.)

A few years ago, I wrote about a conversation that I’d had with Katie. We were talking about when we’d first learned that Brooke was autistic.

Katie said, “I totally remember how you told me. I was five. You said, ‘Brooke is in her own world.’”

I cringed. “Oh God,” I said, “I wish I hadn’t used those words. They’re so friggin’ stigmatizing and so ... not true.”

“Yup,” she said. “We’re all in the same world, she just perceives it differently.”

“That’s exactly it,” I said. “And experiences and interacts with it in her own way. But to say that we’re in different worlds .. Ugh.”

I took a deep breath. “I’m really sorry I said that,” I said. “Just shows where I was at the time. I had a lot to learn.”

What I’ve since learned is everything that Katie and I said to each other that day, but also just how much power words have.

To say that someone is “in their own world” so casually dismisses our connectedness, our interdependence, our shared experiences and our common humanity. Those four seemingly benign words institutionalize the idea that we can’t reach each other, can’t breach the divide that they assume to be present.

And once again, they standardize the nautistic* experience: If someone isn’t engaging with us on our terms, they must simply be living in a totally different world.

Read that last sentence again, would you? Because that’s some pretty messed up stuff, my friends.

My girl is often the most engaged when she appears to be the least. Autistic people have told us a thousand times in a thousand ways that they can either show us the signs that we recognize as “paying attention” OR they can _actually_ pay attention, but quite often they simply cannot do both at the same time.

If you want my kid to sit still, face you, and look you in the eye, that’s where all of her energy is going. There’s none left for listening to what you have to say. If you let her bounce or draw or wander the perimeter of the room while you talk, she’s pretty likely to take in every word while she does.

For YEARS, I was convinced my kid wasn’t engaged. That she wasn’t hearing us. That she had no interest in joint attention or mutual enjoyment of the world that we share. It took me longer than I’d like to admit that I was wronger than wrong about that.

But even if she hadn’t been listening, even if she hadn’t been taking it all in, even if she had been shut down and unengaged, she still would be in the same world as the rest of us, just perceiving it differently .. and experiencing and interacting with it in her own way.

*Nautistic is Brooke's word for non-autistic. It is pronounced NOT-tistic.

{image is a photo of Brooke and me at Steps Beach a couple of weeks ago. She has her left arm around my shoulders and my right arm is around her waist. She is looking off to the side and I am looking at her. We are both smiling. While you might not know it from looking at the photo, she is in the middle of a joke and I am waiting for the punchline. To put that another way, we are fully engaged with one another. 😉}

Image ID:
What's it's like to be disabled

Imagine having to carefully plan every trip outside the house. You make sure it isn't too long that it makes you sick, but long enough that it's still worth it. You work out timings to make sure you leave at your most 'energised'. You save up meds to take to help get you through. You put in rest periods before and after to recover. All so you can go out and be a part of the 'normal' world just for a little bit.

~ leaving the house with chronic illness

I know this isn’t the kind of thing I usually share here, but this is huge news and a very welcome development on SO many levels.

{image is a screenshot of the headline in People Magazine showing Neffy nasal spray with the text, “EpiPen Alternative for Anaphylaxis Approved by FDA - No Needles!”}

COMIC STRIP


In a spinal cord injury research lab, a young man in a manual wheelchair is speaking with a man in a lab coat holding a clipboard.

WHEELCHAIR USER: I don't even care about walking again. Just lemme p**p normally...go research that.

Some ABA therapists and agencies are starting to claim that they are "neuroaffirming." This is intentionally misleading. ABA therapy cannot affirm neurodiversity without becoming something that is *not* ABA therapy. From Unstrange Mind, at TPGA:

https://thinkingautismguide.com/2024/02/can-aba-therapy-affirm-neurodiversity.html -SR

[image: Square graphic with a white background.

Black text on the left reads,

"ABA therapy cannot affirm neurodiversity without becoming something that is not ABA therapy. -Maxfield Sparrow"

"tinyurl.com/ABAisNotNeuroaffirming
""

In the right lower corner is a image of a zebra wearing a green Mardi Gras mask cropped in a circle.]

Tumblr user chronicsymptomsyndrome:

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself though if you were to “tough it out.”
If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.
If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to w**d people like that out of your life.
If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.
You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?
Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes
It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once
You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you

Stop telling disabled and chronically ill people that they're "lucky" because they cannot work 👔

Many of those with chronic illness will have heard the sentence "you're so lucky you don't have to work" or "I wish I could stay in bed all day and not have to go to work"

These comments are really hurtful. To say we're lucky because we don't have to work is to say we're lucky because we have debilitating chronic pain & fatigue that's so bad we can't have that career we dreamt of

Chronically ill people have dreams too. We have passions and things that we want to pursue. But unfortunately chronic illness can mean that just isn't possible. Can you imagine how hurtful it is to go through this and then be told you're "lucky"? 😣

Please think before you use these kinds of statements and how they can really invalidate the pain and fatigue the person you're talking to has to live with daily

[ID: An illustration of a rainbow pen, laptop and alarm clock. Above the illustration is a sentence that reads "Stop telling disabled and chronically ill people that they're "lucky" because they cannot work"]

Most able bodied people don't understand the dread chronically ill and disabled people feel leading up to meeting with a new medical professional.

Those who have dealt with multiple doctors and specialists over the years have dealt with all kinds of traumatizing situations. Doctors dismissing symptoms, gaslighting their patients, refusing to run tests, accusing them of faking, accusing them of drug seeking, blaming symptoms on their weight, blaming symptoms on mental illness. This list could continue on and on.

And this isn't just a one and done situation. It happens over and over. It's not a “one bad apple” doctor. It's the majority of doctors, and happens more often the more complex your case.

I recently had to establish care with a new sleep doctor. Upcoming I have to establish care with a new pulmonologist and new dermatologist. The dread takes over. It causes fear and anxiety, it becomes hard to focus on anything else.

With the dermatologist specifically, for example, I am experiencing symptoms that my previous dermatologist said is most likely a very rare disease. But doctors hate diagnosing very rare diseases (for a variety of reasons) and also many don't even know about them. So now I have to wait to see if the new dermatologist knows about this very rare disease, whether they'll take my issues seriously, whether they'll run the necessary tests, and so forth.

I have to brace myself for the worst. I have to prepare to fight for my needs and advocate for myself. I have to plan for the fact that it will probably bring up medical trauma. I have practice what I will say if they start gaslighting or accusing me. There are so many possibilities, all of them terrible, that are likely to happen.

Chronically ill and disabled people's dread, fear, and anxiety (or any other feeling) is real and valid, and we see you.

-Levi

Masking is when we camouflage or hide our true personality and behaviours to conform to social norms 🎭

Many neurodivergent people will mask in order to fit in to societal expectations. Usually it’s something we’ve learnt to do over our lifetime after being bullied or told that we’re “too much” or “weird”. For many people, it isn’t a choice to mask. It’s an automatic response to past experiences

Masking can look like: suppressing stims, mimicking facial expressions and body language, practicing facial expressions before a social event, pre-preparing conversations, food orders, questions and conversation topics, stopping yourself from talking about special interests

Masking often leads to burnout, meltdowns and anxiety. Having enough time to unmask, stim openly, have time alone and be ourselves, can make us feel better 💜

[ID: rainbow text at the top of the image reads “what is masking?” White text on rainbow bubbles read “suppressing stims, mimicking facial expressions and body language”, etc. Small illustrations of flapping hands, two purple masks and a green eye are placed in between the text.]

ID: post by Kirst

I want to have a shower. I want to watch tv. I want to see my family. I want to sit up. I want to feel the sun on my skin. I want to breathe fresh air. I want to laugh. I want my life back.