Weird As Fuck Living In A Culture Where It's Considered More Impolite To Speak Up And Defend Yourself

chronic illness really makes the weirdest ‘would you rather’ scenarios come to life.

like, would you rather: show up to christmas with no presents for anyone or show up having not showered for a week?

would you rather: feed yourself or do the dishes?

you can choose both but your penalty is to spend an unknown amount of time bedbound afterwards.

me: ive been bedbound for six months

dr: have u tried getting up?

me:

dr: being upright is good for u to prevent deconditioning

me:

dr:

me: it was in fact the first thing i tried

what if ablebodied people believed disabled people when they said stuff exhausts/hurts them, even if said ablebodied people didnt understand or couldnt relate. lol

When talking about disability and chronic illness, people don't understand that happiness isn't optional. Humans have a fun meter in their brain just like the sims, and that doesn't change for disabled people.

I love recognizing limitations and accommodating myself when I can, but at the same time, I WANT to do things for my own happiness. I WANT to cosplay at an anime convention, even if that means I won't be able to walk for 3 days. I WANT to go canoeing with friends, even if that means I'll be sick for 2 months after. I want my room to be clean and I want to decorate my space and I want to go have fucking fun in the real world and not just video games for once.

And when it comes to instances of stuff we do purely for fun, people still talk down to us and give us the "know your limits" speech like us having fun exists in the same context as breaking our bodies for the sake of capitalism. It's not the same thing. Quit shaming disabled people for doing shit. Let disabled people chose informed risk for the sake of fun and happiness. Fun and happiness are not optional.

New favourite thing to do is to remind people of how much they hated lockdown when they say they wish they could stay home as much as I do.

Like no you dont you were miserable when you were forced to stay home all day everyday for the good of your health. Thats my entire existence as a disabled person so pack it in.

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

Your friends and family with chronic pain aren't doing well.

Yes, even the ones that say they are.

Yes, especially the ones that are complaining and lashing out already.

Chances are high that however bad they will admit things are it's actually worse. By a lot.

We're conditioned to be "okay". If we're breaking down at non scheduled times we aren't coping well. I promise.

Your sibling/partner/bestie/parent who is breaking down without preamble on a Tuesday is suffering. Be kind. We're sorry.

disabled people should be allowed privacy. visible disability isn't an invitation to demand personal information from someone. and disclosing disability isn't an invitation to lay out each facet of that disability in excruciating detail. someone having a medical episode deserves privacy even if that episode happens in public. someone who is disabled and struggling or taking a break deserves to refuse people offering help without having to explain why. a disabled person who mentions some things about their disability but not every little thing is under no obligation to explain anything more than they already have. disabled people don't just deserve basic rights. they deserve dignity and grace and respect. and they deserve privacy

visibly disabled people will present others with the most basic and easy to understand request like “please don’t talk to me like I am a small child” and in response people will just start monologuing about how difficult and confusing this is for them and how they’re doing their best and how they need patience and understanding too and it’s so fucking tiring lol

Had an appointment with my neurologist today. Guess who went there with a stupid spark of hope to be taken seriosly this time and ended up crying ugly in the parking lot 🙃🙃