Reason to Live #9075

  Buying yourself a small treat after a rough week. – Guest Submission

(Please don’t add negative comments to these posts.)

shoutout to everyone dealing with. thhe fucking difficulty

the fact that all of my mutuals immediately reblogged this from me really says something about all of us, doesn't it

hey. I dunno who needs to hear this today. but

you are not wrong for getting better. You are not betraying our community. you are not a bad person for trying to prevent others from falling into it. you are not hurting anyone by easing the pain for yourself.

disability is a hard, hard thing. being able to climb up to feeling better, tooth and nail, is an incredibly difficult process. but abled people tend to forget that there is a community here. there is a home to this pain. it has shaped us and our lives. our identities might be forever impacted by that.

you are not forgoing that by healing. it’s okay to get better. it’s okay to work towards being better. you are not betraying, forgetting, or abandoning us. it can be hard not to target yourself or others about this ‘crime,’ but I want you to know that it’s okay.

I believe in you.

On October 4, at about 2:20pm Eastern Standard Time (EST), FEMA is doing an emergency alert test. This means that all phones, regardless of if they have been placed in do not disturb will go off with that beeping noise. If you have a secret backup phone that you need the people you're with to not know you have, set a reminder to turn it all the way off.

For apple phones, this means holding the power button for five seconds and swiping the "power off" switch that shows up on the screen. Same with androids and early google pixels, except you'll be tapping a button. For google pixels 6 and later, you'll hold the power button and the volume up button at the same time. To turn on for all phones, you'll hit the power button and wait a sec.

Remember that the alert will still come through when you turn your phone back on, so make sure that you are in a place where that noise is safe.

Note that, for whatever reason, if they can't put out the alert, the backup test date is October 11th.

The link below is to the official press release with the information.

hey

hey whoever is out there trying to police how cripples talk about our disabilities

stop your fucking toxic positivity shit

people are allowed to be sad about being disabled

we don't have to turn cripple into a positive thing, or crippled

we are allowed to express sadness, rage, depression, fear, upset, all of it over the things we can't do and the things we lose

we are allowed to say that our disabilities "cripple" us

we do not have to reframe it as a positive thing

that shit is poison to actually learning how to live well with your disabilities.

YOU ARE ALLOWED TO HAVE NEGATIVE EMOTIONS ABOUT YOUR OWN DISABILITY AND TO TALK ABOUT YOUR NEGATIVE EXPERIENCES WITHOUT SOMEONE TRYING TO TELL YOU THAT YOU NEED TO CHANGE YOUR LANGUAGE AROUND YOUR OWN FUCKING EXPERIENCE

people are allowed to be sad about being disabled, and no, not just about how ableism impacts our lives. i am allowed to be FUCKING SAD that my disabilities are progressing and i can't knit anymore (maybe ever) or that i can't take my dog for long walks anymore

i am allowed

fucking stop it

Also, we’re allowed to refer to our disability however we want. Don’t come to me with that “you have to say person with autism” shit. I’m an autistic person. Watched a woman nearly get bullied off tiktok because she called herself hearing impaired instead of HoH. Don’t police how other people describe their own fucking disability

This applies to both abled people and other disabled people. The "stop doing this, by the way" part. Yes, a lot of this is perpetrated by the abled both out of misguided attempts at being an ally and just as another attempt to wield social power but we need to not fucking pretend that lateral violence on this shit isn't a big thing.

Don't come to me with that person-first language but also if another person prefers to refer to themselves as "person with autism" shut up and let them. If you have a relationship with them where it's appropriate you can talk about that shit in an ongoing way and maybe reach mutual understanding of reasons and whatever, but for now just shut up and let them refer to themselves how they're comfortable!

As if fucking words were the biggest problem we have!

Being frustrated with the limitations that my autism does place on me and my experience is not incompatible with absolutely, utterly fucking rejecting the idea of being "cured". For that matter, being willing to, in a heartbeat, take something that would make my FUCKING anxiety and depressive disorders disappear, reliably and with only acceptable side-effects does not mean My Life Isn't Worth Living Now, either!

Disability is, unavoidably, one of the most complicated areas of dealing with this shit and trying to impose a single Permitted way to talk about or relate to us and our experiences is not going to work, and never was. And we need to stop duplicating dynamics that are mostly about mechanisms of instilling social conformity in our attempts to disassemble the things that hurt us.

fun thing that I got to do in lab meeting yesterday: moderating another (non-autistic) lab member's request to soften the phrase 'executive dysfunction is one of the most debilitating aspects of autism' in a student's draft.

you know.

because the folks who bristle at any description of autism as disabling sure exist, but I don't know that I would actually view catering to them as an inherently more 'empathetic' approach to discussing fucking executive dysfunction. from the standpoint that autism can be both a disability (and sometimes an incredibly frustrating disability!) and also something that does not need curing, the sentence was fine. so we talked about that and about the underlying community dynamics that the student might have to negotiate if he ever chooses to dip out of the academic context he's largely writing for.

(poor fucker: I also nudged him hard about a sentence that clearly framed a distinction between researchers and autistic people and assumed that the audience would be just researchers, and noted how dehumanizing that shit gets in the long run.)

Chronic illness journal ideas :

I don’t know if anyone else experiences this, but I hate when I’m flaring and in lots of pain and finally manage to sleep, and then I’m in pain in my dream too. It is so frustrating to not even be able to escape the pain while sleeping.

I don't know if abled people will ever really be able to understand the kind of pressure that being in a messy/dirty environment and being unable to clean it up puts on you

like, we just managed to clean off our desk and vacuum for the first time in... over 6 months?

The amount of relief we're feeling is amazing

but also like

That was pressure before we did that. We were feeling that for over 6 months. This relief is that pressure being LIFTED.

Anyway, PSA:

Don't blame someone for having a dirty or messy living space. If it's a problem for you, it's probably a problem for them, too. Maybe offer to help clean it up, or just kindly shut the fuck up? That person is probably putting a large amount of pressure on themselves about the space, too. Don't make that worse by being a dick about it.

Chronic illness is so discouraging…every time I have something important going on I get sick.

I wish I had a body that was able to keep up with me.

I come from a long line of people with something wrong with them

Is it my meds or one of my conditions making me nauseous?

A novel by me.

it's OK if you "don't get out much", it's OK if most of the time you leave your house it's for medical appoints, it's OK if the only time you leave your house is for medical appointments. it's OK if you can't go out alone and need help to get around. it can be lonely and isolating, and holy fuck does it get boring sometimes! but it's nothing to be ashamed of. we're in this together even if we're on opposite sides of the world. i love you.

Friendly reminder: even if to you the idea of living without a partner seems sad and lonely, if someone tells you they don't want a romantic or sexual partner, it's not a sad thing. It's a beautiful thing - it means they're living the life that will make them happy rather than abiding by societal expectations.

the worst thing in the world is doing things. the second worst thing in the world is not doing things. how has no one ever come up with a solution for this

it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

seeing trans ppl in public is literally life giving. wish there was a normal way to express to other trans people in public that we’re family and that i love them

🌳 For any spoonies for whom trauma and/or abuse are a contributing factor in your physical disability or physical chronic illness, we see you and we love you.

The fact that we only get 24 hours in a day is bullshit. And I gotta spend 8 of those sleeping otherwise I collapse??? And I gotta spend another 9 of those doing a Job or else I become homeless???? And then for the remaining 7, I have to spend a hefty chunk of that mentally recovering from the 10 hour job? And also taking care of myself and my place of living? This is bullshit. Days should be longer.

Everyone responding to this with “what if we just go to work for less hours” you are so objectively correct lets kill capitalism together <3