thedishranawaywithmyspoons

[thedishranawaywithmyspoons]

[thedishranawaywithmyspoons]

my utopia has disability in it. my utopia includes free healthcare and no-questions welfare and state-funded carers. my utopia includes building requirements that centre disabled bodies — ramps and lifts and dimmer switches and braille signs. my utopia has disability in it. because without disability, it’s not much of a utopia at all

[thedishranawaywithmyspoons]

May your pain medication always kick in right after you take them. May your compression garments always slip on your body with ease. May you always find your footing when you walk. May you wake up with energy and zest. May your sinuses always be clear

[thedishranawaywithmyspoons]

The embarrassing parts of a disability never stop being embarrassing. The visible parts don't become invisible. Some days you will notice the stares, the looks of confusion or disgust or intrigue, and you'll look inward and feel those same thoughts returning.

It's okay. You are allowed to be upset still, you can be upset and embarrassed for the rest of your life. You'll get used to it most days, but just cuz "it's been 20 years" or "i've been like this my whole life" doesn't make how you feel suddenly invalid.

You can mourn not being able to walk or run forever. You can mourn not being able to socially connect forever. You can mourn being pain-free, medication-free, disability-free. You don't have to "get used to it" or "get over it" so harshly. You can always cry a little, it's okay.

It's okay to be disabled, and it's okay to feel like it's not. You are loved no matter what ♡♡♡

[thedishranawaywithmyspoons]

we’ve made autism into a small insignificant personality trait/identity like being queer and that’s actually so fucking wrong and insulting

37.9% of autistics have an intellectual disability

1/3rd of autistics are completely nonspeaking

most autistics will not be able to hold a job, go to college, or live on their own

autism rarely travels alone and has many medical comorbidities like epilepsy, mitochondrial disorders, and genetic disorders (which are the most common comorbidities - these aren’t rare complications.)

we can have discussions about autism and ableism and how society sees us without spreading misinformation.

autism is a lifelong, often debilitating neurodevelopmental and genetic disorder that affects how one communicates and interacts with the world. it is not “just being socially awkward” or feeling nervous in social situations. it is a neurological disability. start treating it like one.

[thedishranawaywithmyspoons]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[thedishranawaywithmyspoons]

the fact “doctor shopping” is a term that exists at all is constantly fucking insane to me. imagine if that existed for any other profession. imagine if you went to a mechanic and told them your car was making a strange noise every time it started and they said well that’s actually not a big deal at all and it’s totally normal and you’re overexaggerating the issue so you can get car parts you don’t need. and then you left and told your friend you were considering looking for a new mechanic because of that and they were like ummm why are you mechanic shopping?? you can’t just go around to different mechanics until one tells you what you want to hear. obviously if that mechanic said your car is fine it’s fine! and you’re like oh ok i guess so you just keep driving your car like normal and then two months later it explodes and nearly kills you. now you have to pay for your medical bills AND a new car. also the mechanic that told you everything was fine is deemed completely unresponsible for this and you still owe them 300 dollars for telling you your car was fine and also all your friends STILL think you’re overreacting for wanting to find a new mechanic after the last one nearly got you killed

[thedishranawaywithmyspoons]

[thedishranawaywithmyspoons]

tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.

when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. stop doing a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

[thedishranawaywithmyspoons]

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[thedishranawaywithmyspoons]

I don't want to make ““doctor’s appointments””and ““schedule a follow up.”” I want to be coaxed gently into a crate and taken to the vet.

[thedishranawaywithmyspoons]

She still refers to is a autistic burnout, but I know there are a lot of people in the autistic community who want to move away from the term burnout, including me. I can it neurocognitive decline. There is no set term for it right now though. But it's tough going through it. Some people take it seriously and I'm seriously thankful. There are other people I know who don't take it seriously... and that had been exhausting to deal with.

[thedishranawaywithmyspoons]

I need a cpap machine but theyre so expensive…. Idk what to do anymore

[thedishranawaywithmyspoons]

So funny* to me when very loud disability “activist” type folx will angrily post about needing necessary accessibility accommodations and then turn around posting maskless selfies in public. Your lateral ableism is showing and it’s louder than you intended it to be.

*By funny I mean completely infuriating, but laughing helps me cope

[thedishranawaywithmyspoons]

Affirmations for Those of Us Still Masking & Doing What We Gotta Do To Protect Ourselves and Others From Covid:

I'M MAKING THE RIGHT DECISIONS

I'M DOING WHAT I CAN TO PROTECT MYSELF, AND THAT'S ALWAYS GOOD

I'M DOING WHAT I CAN TO PROTECT MY LOVED ONES, AND THAT'S ALWAYS GOOD

I'M DOING WHAT I CAN TO PROTECT CHILDREN, AND THAT'S ALWAYS GOOD

I'M DOING WHAT I CAN TO PROTECT THE ELDERLY, AND THAT'S ALWAYS GOOD

I'M DOING WHAT I CAN TO PROTECT DISABLED & IMMUNOCOMPROMISED FOLKS, AND THAT'S ALWAYS GOOD

AIMING TO BE WELL-INFORMED ABOUT COVID IS THE RESPONSIBLE THING TO DO

I HAVE EVERY RIGHT TO FEEL AFRAID ABOUT THIS VIRUS, AND THERE'S NOTHING WRONG WITH ME FOR LISTENING TO THAT FEELING

LISTENING TO MY INTUITION IS SAVING MY LIFE

TAKING COVID SERIOUSLY IS SAVING MY LIFE

TAKING COVID SERIOUSLY IS SAVING OTHER PEOPLE'S LIVES

WEARING A MASK CAN ONLY DO GOOD FOR MYSELF AND OTHERS

I'M DOING THE RIGHT THING

EVEN IF OTHER PEOPLE DON'T GET WHY I'M STILL MASKING, I WILL STILL LISTEN TO MY GUT & MY KNOWLEDGE ABOUT COVID BECAUSE I KNOW IT'LL BE WORTH IT IN THE LONG-RUN

EVEN IF OTHER PEOPLE DON'T GET WHY I'M STILL TAKING COVID SERIOUSLY, I KNOW WHY I'M STILL TAKING COVID SERIOUSLY, THEREFORE I WILL STILL STAY TRUE TO MY VALUES

EVEN IF OTHER PEOPLE DO NOT LISTEN TO THE KNOWLEDGE I HAVE ABOUT COVID, I KNOW I DID THE RIGHT THING TO TRY AND EDUCATE

I HAVE NOTHING TO BE ASHAMED OF FOR TRYING TO HELP SPREAD THE WORD ABOUT THIS ONGOING PANDEMIC

I HAVE NOTHING TO BE ASHAMED OF FOR STILL WEARING A MASK

I HAVE NOTHING TO BE ASHAMED OF FOR NEEDING MY LOVED ONES AND FRIENDS TO BE ON THE SAME PAGE AS ME ABOUT THE SEVERITY OF COVID & THE PRECAUTIONS WE NEED TO TAKE

I HAVE NOTHING TO BE ASHAMED OF FOR ASKING THE PROFESSIONALS I CONSULT (ESPECIALLY DOCTORS) TO WEAR A MASK IN MY PRESENCE

I HAVE NOTHING TO BE ASHAMED OF FOR DEMANDING HEALTHCARE ORGANIZATIONS & PROFESSIONALS TO TAKE COVID SERIOUSLY AND TO BE HONEST ABOUT IT

MY VOICE MATTERS

MY WELL-BEING IS WORTH IT

MY HEALTH IS WORTH IT

I AM WORTH THE EXTRA MILE TO PROTECT ME

MY LOVED ONES ARE WORTH THE EXTRA MILE TO PROTECT THEM

CHILDREN ARE WORTH THE EXTRA MILE TO PROTECT THEM

THE ELDERLY ARE WORTH THE EXTRA MILE TO PROTECT THEM

DISABLED AND IMMUNOCOMPROMISED FOLKS ARE WORTH THE EXTRA MILE TO PROTECT THEM

COVID IS NOT OVER, THEREFORE MY ACTIVISM IS NOT OVER

WEARING A MASK IS CRUCIAL

ADVOCATING FOR CLEAN & FILTERED AIR IS CRUCIAL

MY EFFORTS TO PREVENT CATCHING AND SPREADING COVID WILL ALWAYS MATTER

MY EFFORTS TO PREVENT CATCHING AND SPREADING COVID WILL ALWAYS BE WORTH IT IN THE LONG-RUN

MY LIFE IS PRECIOUS, SO I CHOOSE TO DO EVERYTHING I CAN TO PRESERVE IT

I AM NOT IRRATIONAL FOR CARING ABOUT MY HEALTH AND SAFETY

I AM NOT IRRATIONAL FOR CARING ABOUT THE HEALTH AND SAFETY OF OTHERS

I AM NOT A BURDEN FOR ASKING OTHERS TO WEAR A MASK

I AM NOT UNREASONABLE FOR GIVING A SHIT ABOUT MYSELF AND OTHERS

I DO NOT NEED ANYONE WHOM TRIES TO MAKE ME FEEL GUILTY & RIDICULOUS FOR CHOOSING TO MASK

I DO NOT NEED ANYONE WHOM TRIES TO MAKE ME FEEL GUILTY & RIDICULOUS FOR STILL TAKING COVID SERIOUSLY

[thedishranawaywithmyspoons]

The CDC is trying to limit the new COVID booster to only people 75+, pregnant people, and the immunocompromised.

We have two days (as of September 6th, 2023) to let them know this isn't acceptable.

Direct link to the page to submit your comments: click here!

Please, PLEASE fill this out and boost this post!

[thedishranawaywithmyspoons]