played for 30 min and my hands gave up great
#hEDS

I assume you've been to other locations already but I always like stopping by Kinokuniya (bookstore) since there's none where i live :)

MY SHAYLAAA T___T

I also got to meet a fellow Vietnamese person who was the head of the Hanoi Association of People with Disabilities and we had a lovely chat. I didn't know much about the disability movement in Vietnam and was filled with hope to learn more.

Also look at this professional person doing professional things +

the flavor is so rich!

omg i stumbled across a fellow Berlin graphic recorder :D

would you like to chat a bit to share experience? (no pressure of course)

however i also want to say that some parts of my life did change more positively after my disabilities got worse such as my research skills, my understanding of disability justice, etc. but i wish there were other ways to acquire those growth lol

absolutely, i saw a tiktok that compared having a chronic illness with someone having a child for the first time - your whole world is upended and you have so many things to consider now every time you want to do anything +

and i think if people actually meant to say "find joy despite it all" people can say that instead, because this phrase better acknowledge the impact of disability while still encourage joy :)

my disagreement was with the phrase "don't make your disability your personality" because it indicates a lack of understanding of how all-consuming my disabilities are and also the tone tend to be patronizing +

I understand the instinct to want to separate "disability" from "living your life" from "personality". But may I remind you of that Annie Dillard quote "How we spend our days is, of course, how we spend our lives"

I don't "let" my disability become my whole personality. It is already who I am.

As for hEDS (and its friends): I can no longer do a lot of activities that align with my identity that often/that well anymore. Whether it's drawing, painting, crochet, activism, hang with friends, or simply "have a think". I am more irritable, often not as sharp or funny as I want, (3/4)

I think for my neurodevelopment stuff or depression it's a bit easier to explain: this is how my brain has always worked. And I know "personality" is a complicated psychological concept, but for me my "self" reside in the brain, which is neurodivergent. (2/4)

Happy Hanko de Mayo!!

I know I say this every week but the line up is crazzyyyy

i am *too* aware of EDS this EDS awareness month 🥲

I'm sorry to hear that even basic self care is hard right now :(
we're in this together