#a) literally where is the connection b) The Ableism c) die

[vampmilf]

i asked my trainees if they have any pens that write blue bc mine just ran out of ink and i only have black ones left but i dont want to switch colours mid-notes and one of them immediately went "hahaha are you autistic or smthn? :D" ... 😐 die

[osokasstuff]

i want to have more representation of people with congenital heart defects.

i have a congenital heart defect, and i've known about it for my whole life, and i've never felt represented.

it's not rare (rare conditions deserve representation, too!), it's kinda 2% of children are born with congenital heart defects, but like. where we are? oh i forgot. we either die in early childhood or get surgery and become perfectly healthy (tm). /sarcasm

when i look for media about characters with congenital heart defects, it's either tragedy (tm) or inspiration porn. when i look for experiences of people with congenital heart defects, it's either parents of children with chd (i don't mind of caregivers being in disabled spaces, but a) i wanna see actual people with chd too; b) their discussions are from parents to parents, so they don't center living experiences of people with chd and it's not all what i looking for; c) some of them are ableist), or medical articles, or tragedy stories (tm) centering struggles of caregivers of people with chd, or inspiration porn, and very rarely actual people with chd being people and talking about their experiences.

like. i wanna awareness and acceptance. i wanna stuff like for some others disabilities, i wanna "nothing about us without us," i wanna pride, fuck, i even agree on discourse (/half-jokingly), i wanna something besides radio silence!

there is tons of info! there is tons of shit to debunk, there are tons of questions to consider, there are tons of overlaps and comorbidities and intersections! (what am i doing i'm literally promoting talks about chds to online community. here lack of representations can get you. /jokingly)

do you know that chds aren't rare? do you know that surgery (tm) doesn't make you perfectly healthy? do you know that surgery isn't always performed on infants/younger children? do you know that surgery isn't always necessary? do you know that lots of us have to undergo several surgeries, sometimes lots of surgeries? do you know that lots of us have other disabilities, congenital or acquired? do you know that surgeries (tm) cause complications (tm)? do you know that lots of chromosomal conditions are associated with/directly causing chds? everyone knows that autism often co-occures, if not causes, the digestive issues, but do you know about high comorbidity of autism and chds? (maybe i overestimate awareness about autism & digestive issues overlap. i'm sorry if it's so. it wasn't intended to erase someone's experience. i just often see talks about autism & digestive issues in popular autism advocacy and never see any mentions of chds. i don't know how to word it better. i recognize we still need to raise awareness about autism & digestive issues comorbidity, especially awareness that doesn't center lsn perspective. i appreciate work of autism & digestive issues comorbidity advocates. i simply mean that we need autism & chd awareness and advocacy too). do you know that anesthesia may cause brain damage? do you know that connective tissue disorders have a huge comorbidity with chds because the cardiovascular system contains lots of connective tissue?

do you know that infectious diseases are dangerous for us because we can get heart complications? do you know that we are often immunocompromised because of our chds?

do you know about ableism towards us? do you know about the idea that heart problems are something for elder people and not for children/teenagers/young adults? do you know how anti-fatness stereotypes and narratives affect us and frame our experiences? do you know that heart problems are often framed as personal fault and failure, as a result of having a "bad lifestyle?" do you know how extremely healthist the society attitude towards heart conditions is? do you know that, while heart conditions are often framed as something "extremely serious," our struggles are often overlooked, denied, and erased because of assumptions around this idea (children can't be disabled, children can't have something serious (tm), chds are only for children so adults can't have them (if you have chd, when you get 18 yo, you explode, i assume /sarcasm), surgery (tm) completely fixes us (tm), so if we have some symptoms after surgery, no we don't, and more more more).

i can elaborate endlessly. i think i'll make other posts about some experiences with having a chd. so stay with me if you wanna read more.