#loaf screm

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so am not saying u can’t comment or critique about disability related stuff in china n if they ableist or affirming, n not saying nowadays modern global culture n perception not influence eachother even if very far apart, but do find it distasteful when you then go on only cite european & US history & lens n make no effort mention chinese history n chinese cultural lens

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not to disturb my own tumblr peace but recently sth on instagram (the ONE time go on it in like months coincidentally) etc etc n so posted this over there. going post here too to keep things same

any “you” in here = general you

original instagram post transcript:

i don’t owe anyone explanation on why call self the way i do beyond that these what i call self

so something happened recently, and dont feel comfortable nor safe talking about what. in fact this post incredibly uncomfortable to make for reason relate to and unrelated to this specific thing. so may delete this later. but there things wanna talk about because of it.

do not owe anyone explanation on why i call myself way i do beyond what already said

n that be. HSN (high support needs).

really not know how make it any more straightforward than that, listed in bio like that.

if people not believe that then that should not be my responsibility. n you should wonder why you think you know me better than me.

for longest time (and especially now) never found any comfortable way call myself. this goes for support needs labels but especially for autism levels.

not comfortable call self level 2.

not comfortable call self level 3.

not comfortable call self level 2-3. or 2.5, or 2.75, or whatever new unofficial colloquial way to appease self.

doctors have called me level 3 n simply not feel comfortable claim it. knowing how people see my life history n knowing my level 3 friends without functional communication and need 2:1s, who may never able do things can do for myself, that am worried am watering down for.

to retrospectively apply terms, was more level 2 MSN younger, low-medium support needs when adolescent

then adolescent young adult had complex disability situation including autistic catatonia (medically diagnosed with research backed diagnosis n experience), which comes with - whether want call it, regression or deterioration or skill loss in all fronts (while regression typically describe young autistic child experience, in rare cases it do happen later than age 3, n word regression for that has been used by ICD 11 n other sources n doctors).

it not something bother hiding, will see me mention on tumblr in past n now when relevant. am rarely on instagram, most posts here be repost from tumblr, n cannot keep track when n where said what with what context.

also,

some people’s autism level not neatly “line up” with their support needs labels.

am not split level. but people with split level may also have complicated relationships with their support needs labels.

am not here dictate what they are. esp not when they have their support needs label clearly written. am not here to analyze what their autism level should translate to instead.

don’t have standard high support needs / level 2 / level 3 autistic experience n would be scrutinized no matter what

not owe anyone life story or explain my complex relationship to how feel abt identify

but feel pressure do that because keep be misunderstood n assumed.

n also, will not explain why, but in place in life where feel more and more unsafe talking about my medical information and extent to my disability online. am still thinking about what to do about it. it possible leave autism advocacy altogether.

everytime post something write something know my wording going be scrutinized and picked apart.

it immensely stressful as someone with communication disability, cognitive disability, n intense OCD… on top of autism, which inherently impact social communication and not realize other people may interpret words differently from what you trying to communicate until it happen.

know my friends with intellectual disability also experience similar anxiety.

being in autism (& comorbid) space inherently mean this will happen. but unfortunately do not feel there enough grace for when it does.

unfortunately be invalidated n spoken over be quite… typical experience for high support needs (and medium support needs!) autistic.

know that because experience that on daily myself, online and irl (gotta remember am nonverbal and that invite whole slew of things).

get really sensitive about it naturally.

but it does not mean you get authority over and scrutinize others and do similar to others.

no matter who you are or what you experience.

will probably not be responding to anything more than this.

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tbh been think abt leaving autism advocacy for while now because so many ppl be so insufferable about it, the bullying the harrassment the fake claiming the drama the idolizing

plus internet n data privacy concerns esp w so many places checking social media now, like for visa n travel. am not doing anything wrong but it really easy change goal post n change definition. n talking abt medical info, esp my level of stuff, n leave that record for people to see. am not in situation where can just pretend it *just* paranoia (like it both ya know). overwhelming anxious urge to purge all social media n internet trace too n while think that be anxiety suffocating me atm but still

but also it’s like been doing advocacy been doing disability advocacy autism advocacy for years now six eight years it just naturally what drawn to n it what am really good at n for long while it be special interest n it’s not quite gone just tired n. it hard just stop sth so big of your experience n part of who you are

n as someone v isolated irl. online be rare place can meet ppl, place where be with people n talk into void talk *at* people without need actively talk to people.

plus can never escape consequences of autism advocacy esp *bad* autism advocacy. will be one of the first people to experience consequences of it bc amount of my layors

no decision just thoughts but maybe one random day just stop doing it n tbh that sound freeing if can make self be okay w it

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high support needs (HSN) include HSN ppl who cannot communicate independently enough or independently at all n need caregiver assist

if your definition of “HSN __” (HSN spaces, etc) not include HSN ppl like that n caregivers they need to be there n communicate, or worse think that kick them out of HSN, then it a you problem

sometimes spaces still exclude these HSN ppl even if not mean to. for example: anything with implicit (hidden) requirement that need person to communicate independently, when claim to represent *all* HSN

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for some people their wheelchair made their world lot bigger

for some people their wheelchair made their world lot smaller

for some people it feel both at same time. or neither.

other people realities different from what you know shouldn’t feel threatening to you n if it does it yours to work thru

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reminder that EDS just one type of connective tissue disorder & hEDS just one type of EDS & hEDS just one type of connective tissue disorder

ppl w EDS have connective tissue disorder but reverse not always true

ppl who say they have connective tissue disorder or even genetic connective tissue disorder =/= assume they mean EDS or have EDS

e.g. other genetic connective tissue disorders like marfan syndrome, loeys-dietz syndrome, osteogenesis imperfecta, n much more. when look beyond genetic there even more, like autoimmune ones like lupus & rheumatoid arthritis & scleroderma & sjögren’s, or also like sarcoma cancer (tho some rarer cases be hereditary)

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even if u do happen see more severely disabled ppl or high support needs disabled ppl get support they need

1) frequency illusion and confirmation bias. you see one well supported severely disabled / HSN person, it more remarkable for your brain, you think see it more often than it actually happens, n you filter out ones that not confirm your idea.

2) the amount of support we need to merely stay alive much more than disabled ppl less severe or lower support needs. we may look like we receive amount of support that allow lower support need person to thrive, but it may just barely keep us alive n we actually still very neglected.

3) severely & HSN disabled ppl *especially* isolated n locked away n hidden, historically n now, whether institutionalization, or lack of support to go outside or be online, or we home bound bed bound bc inherent disability symptoms, or other reasons. ppl you see who can be not locked away often naturally be the more privileged among us. u not see the less privileged ones.

4) severely & HSN disabled ppl who not privileged to get enough support just. die.

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sometimes (most times!!!) disabled people just exist! sometimes we just exist n want to do stuff and just do that like nondisabled people! not everything we do be part of disability plan or care plan or accommodation or service or therapy! we just regular person existing!

if your first instinct to hear “disabled ppl who do this should get to” be “that shouldn’t be part of accommodation because [prejudice dress in social justice language]” then problem is YOU!