My least favorite part of being in pain and disabled is having people make decisions for me, without my asking.

Note for non-disabled people: don't make an assumption about what a disabled person needs or wants. Don't pick up their mobility device for them, even if it will put them in pain to get it. Don't get them a drink they didn't ask for because you assume they want it. even if it might be easy for you to get up and get a water, it takes away a disabled persons autonomy to do it without asking them.

Just... Do what they ask you and leave it at that. No more, no less.

This is doubly important when it comes to things that involve other people or materials.

I promise you, if the disabled person hasn't asked for it, there is a reason.

For me, it's because I don't want people to look at me funny. I don't want peoples pity, I don't want to make a scene. I will choose to be in pain for an extra few minutes instead of make a scene, 9 times out of 10. I don't want to draw attention to myself, even if it gets me something with which to lower my pain levels.

It's important to recognize that, especially for folks with mobility struggles, personal agency is incredibly important.

When your agency to walk, or do things people normally wouldn't even think about (like walking up some stairs) isn't in your control, or is limited in some way, little things like assumptions about needs make it even worse.

To use a mundain example, if you see a disabled person needs some ketchup for their fries, getting it for them takes away the agency to choose to do it themselves. Sure, it might hurt to get up and get the thing, but at least I can choose to do so or not. It's better that I choose if ketchup is worth getting up or asking for help for, than if someone does it for me. It tells me that you make assumptions about my abilities or capacities, and it shows me that my concerns and needs aren't as important as your discomfort with my being in pain/being disabled. You didn't get the ketchup for me, you got it so you don't have to watch me struggle.

This is a very important distinction.

Especially as I am going to struggle regardless, even if you save me the walk to the ketchup

Why did I choose ketchup for this example? What a weird choice

Also, seeing as I'm on this rant:

Don't touch a disabled persons mobility or accessibility aids without permission. Don't assume you can pick up a cane, don't assume you can help someone get their crutches. If they ask you, do it without complaint or expectation. If they don't, leave them better.

At least 3 people have decided my cane is something they can move or choose where it is today, and I'm over it. How would you feel if someone could just take your ability to walk into their hands, and leave you wondering if they will give it back or make fun of you for needing it.

Just fucking don't do it.

Anyways. Rant over, gonna go be disabled somewhere else

Wow this post has been boosted 45 times

I think that's my single widest reaching post yet on the fedi

@eclectic great rant!

I am using an electric wheelchair and if anyone, even my closest friends, try to drive it without asking, I am losing my absolute shit.

On the good side: the day I got my electric wheelchair, was the best day of my life. I felt so free, because I was able to drive by myself.

So yeah, mobility aids are immensely important and the freedom they give should never be taken away. Even if the freedom is not doing a thing or messing up.

@00Ni 100% agreed. "even if the freedom is not doing a thing or messing up" is exactly what I'm going for with all this.

we are people as much as anyone else is, and we should have the freedom to do things how we see fit - not how others see fit.

@eclectic I hate when people do that with my cane. I've gotten to the point of telling people I'll walk them if they move it. It's so dang disrespectful!

@eclectic I mean, it's mundane as hell, so something people with lots of ableism residue in their minds wouldn't think about. probably a good example

@eclectic and see, I personally would be fine with people asking if I want a water etc, but it's just weird to single out a disabled person and ask them for something like that unless you know them well enough to know they're okay with it
(and, ofc, most don't even ask they just *do* 🙄)

@raphaelmorgan asking is one thing, but to do something without even asking is just not right.

@eclectic yeah
I think what I was going for was "never do it without asking no matter who it is, and only ask to do the thing if it's someone you know, otherwise simply don't"

@eclectic ugh this happened just the other day to me, Home health Aide basically screwed up a weeks worth of cooking because she assumed and didn't ask

@eclectic I try to keep a saying I've heard in mind: "Helping in a way you have not been asked is not helping."

If I think I can do something that will help someone else, I should refrain. If I really want to, I should ask, and hope I can frame it in such a way that the focus is on my desire to assist. I take a "no" at face value.

@eclectic Thank you for the reminder. I'd like to add that it depends on the type of disabilities of the person. e.g. If they are autistic they might go mute at times of a shutdown. So if you see them struggling or if they seem very retreated into themselves and you suspect they're overwhelmed absolutely try to communicate with them. If they seem to struggle to answer, try simple yes/no questions they can nod or shake their head to. Ask them if they need a glass of water or a blanket

@alinanorakari As has been discussed by a few different folks, its all about asking. If you notice someone you know to have autism and who goes non-verbal during a shutdown might be struggling, the most important thing is giving them the agency to decide.

you wouldnt assume that this hypothetical person needs some kind of sensory aid, you would ask them - in whatever means works for them at the time.

its all about the agency to determine our own needs - when others do it for us, it only becomes more challenging.

@eclectic I have planned to create a little emergency card I can pull out that has the absolute basics like "Hello. I'm currently in a state in which I need help. I can hear you and I can answer yes and no questions by nodding and shaking my head. If you want to help me you can do the following: [a few bullets]. Please do not [another few bullets]" I'll be explicitly avoiding the term autism as to not prime them with their likely wrong preconceptions

@eclectic however I do know others who go into shutdown hard or who will lose control in or after a meltdown, and who will be totally unresponsive and who need someone to just be with them until it's better again. They usually need a blanket because they are paralyzed and will lose body heat

@eclectic I'm talking about people who are usually not appearing to others as somebody in need of support by the way, e.g. currently completing their phd, living alone and usually being able to care for themselves and with many strategies to mitigate problems they're facing, but sadly not always on top of or in control of the things that trigger their meltdowns/shutdowns.

@eclectic A good, non-obvious (to me, at least) point, well made.

@porsupah I'm glad. I was venting in a coffee shop, delerious from pain

@eclectic hug Gods, I wish there were something any of us could do to bring you a bit closer to understanding WTH's going on to bring you that pain, and what can be done about it..

@porsupah thanks <3. honestly, if it werent for the fedi im sure id still be telling myself that im just making it all up still

there may not be much that yall can do to help me figure out why im in pain, but at least yall so constantly make me feel like im justified and valid being upset or talking about the pain.

legit, if it werent for you and so many others here on fedi, i wouldnt be anywhere near where i am today - especially with all the mutual aid yall have offered.

Fedi soff, fedi comfy

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