My random mental health confession is I can’t watch movies or TV shows w tweens/teens doing cool stuff bc it just reminds me of all the stuff I didn’t get to do bc I was stuck in racist, misogynist Saudi as a Pakistani kid. That took me over a decade of daily rumination & crying to get over bc of continued after effects re being “behind” my peers for basic stuff. & I don’t want to cry abt it more.

Randomly thinking abt how growing up my parents often got thought of as the cool parents by other kids bc they were usually not trying to make kids act like mini grown ups / let us do ridiculous things I went to the equivalent of a private school & while it was a big stretch financially for my family, my peers were from really well off families & there were elaborate big birthday parties. My 9th bday was a picnic at local park & kids had to be dragged home from it

Someday that is not a day when I’m in severe pain from prob another subluxation I’ll write a long long rant abt the terrible design practices in medicine where a good chunk of the tests are not at all designed to work for patients who can’t sit up & there are no alternatives There are other similar problems for a variety of access needs that are completely not considered anywhere bc patients are basically never the primary stakeholder of almost any medical tech stuff in the first place.

& also the profile of patients incl in design req is v narrow

Idk if this is a diaspora person idealizing “homeland” thing but one thing I’ve noticed is growing up in Pakistan I was taught ppl made bad decisions due to lack of edu/info & here w theoretical universal edu, bad decisions are blamed on lack of intelligence or mental illness Don’t get me wrong there’s intense amts of classism in Pakistan w stuff like elites saying ppl shouldn’t be allowed to vote w/o passing educational stds etc.

But things seem more attributed to social factors than inherent biological ones

To be controversial for a sec

the social model discourse in the disability community sometimes feels similar to how some Muslims respond to antiMuslim bigotry w certain idealized narratives abt the Muslim community

🧵 that often erase diversity of exp/thought w/in the community as well as gloss over issues or disagreements in the community

FML I’m getting harassed by EDD over an unemployment claim from 3 yrs ago that I gave them all the info abt. I quit bc job wasn’t providing disability accommodations. I explained that to them when their rep called me abt the claim after I filed it. Now I got a letter saying I need to submit a bunch of new stuff by Tuesday or I’ll have to pay them back. Like we already had this conversation 3 yrs ago. Why TF are your records so messed up? I suspect it’s their “fraud” dept trying to catch ppl out but I never said I was laid off.

I really really hate that pop culture uses psychotic as a synonym for violent & dangerous

Whereas when I’m psychotic I spend 99% of the time terrified of things like the colour blue or grocery bags or my bowl of cereal Actual convo w my psychiatrist abt a psychosis episode:

ya so I couldn’t unpack my groceries bc the grocery bags were sentient & looking at me like they were judging me

Not to be the iodine girl again but food writers need to stop demonizing iodized salt to an audience which seems unaware why it’s iodized in the first place. Iodine isn’t an “unwanted additive” akin to anti caking agents etc. It’s saving your life silly ppl! In case you’re curious this was me being iodine girl round 1

Somehow I end up talking abt iodine a lot bc I also don’t tolerate iodine based CT contrast

https://twitter.com/hellozeik/status/1518461856414793728?s=46&t=SyqyZp0QQf1dqmutrwZ_tQ

My thoughts on this are really nebulous so hoping discussing will help clarify. But I’m wondering if part of the reason why the pandemic response by regular ppl has been so bad is bc risk assessment as a general life activity is kind of pathologized as irrational anxiety? I’m not sure what risk assessment tools are even taught to ppl outside of certain professions. But it’s an essential life skill that applies in a lot of situations but I’m not sure if ppl are actually being taught abt it & possibly even actively discouraged?

My therapist had to cancel today’s appt bc sick & we were gonna discuss how to stop my parents triggering me which exacerbates my CSF leak symptoms & guess my parents have done it again just today. Twice. I’ve told them a bazillion times. Therapist also emailed & explained before This when I’m already having a hard time emotionally preparing for someone coming to help w cleaning tomorrow bc COVID risk. & I also need to prep stuff for them but can’t get up even more than usual bc fainting lying down thanks to being triggered.

Lots of ppl need to hear this…bc too many absurd posts abt making holiday travel & gatherings safer

safest options are to not travel & do online gatherings

In person is not safe. Period. Harm reduction w vaccines, rapid tests etc do not equal actual safety. For the 10 millionth time,
Vaccines reduce but don’t prevent transmission
Rapid tests have false negatives esp early in infection esp w newer variants
Asymptomatic infections exist
Outdoors is safer but not safe esp maskless w prolonged close exposure like over a meal

I wish ppl would stop saying “physical disability” / reinforcing the inaccurate physical/mental divide at least within disability community

I understand needing to identify diff access needs etc but physical is a broad category anyway & access needs overlap a lot My pet peeve abt this is both abt technical inaccuracy & latent bias against certain forms of disability vs others that these distinctions give rise to…w the type of disability the bias is against shifting by the parameters of specific spaces

Unsure what they taught in yours but generally it’s to learn that it’s an ethical responsibility to whistle blow if your company is dumping toxic waste into a river but designing nuclear bombs is completely ok bc the govt said it was for protecting freedoms or something

https://twitter.com/lamont_mm/status/1602391824467128320

FWIW mine was at a Canadian engineering school & covered topics the provincial professional engineering licensing body thought were important so we’d be prepped to take their ethics exam

also spent time on stuff like OSHA, IP law etc but never on the ethics of making murder tech

I’m reading a book w an ND character whose upset at ppl lying to her bc they think it’ll make her anxious to be told certain things

& like it’s so real it’s almost triggering bc I’ve had this exact discussion w family so many times & sometimes my doctors I wish ppl would learn that not knowing is often more stressful than knowing or learning later that it was possible to know abt an issue & plan for it before it became urgent

Idk if this is a STEM workplace thing but lack of “human performance” margins in everyday work is so pervasive

It’s esp silly in space science bc we spend so much attention/effort on project margins – technical/schedule/cost

But that doesn’t translate to accessible workplaces It’s like humans are expected to not need margins like objects we build do

system engg has whole philosophies of well margined projects for safety & perf. But we don’t seem to apply that logic enough to ppl on the ground tho there is some consideration of this for astronauts

So it turns out I can’t actually do the test needed to check for CSF leaks bc it uses iodine based contrast which causes a severe neuro rxn for me even just injected into vein & this test involves injecting it into cerebrospinal fluid which is an extremely bad idea. I’ve not been offered an alternative so idk what to do now.

I’m gonna write a longer blog post abt this later but there’s a phenomenon on internet that really annoys me which is ppl assuming everyone is aware of same facts/issues & treating lack of awareness as always willful. This ignores info bubbles re algo but also “unknown unknowns” Like I totally get the idea of ppl should actively educate themselves abt various social justice issues. & also ppl have to know the issue exists to look up info abt it. The info context they grew up with / live in matters to what they even know to look up.

I’m seeing a lot of “ppl are being misled abt COVID” sympathy & while I don’t disagree w that, it doesn’t apply to everyone. So many ppl I personally know who have long critiqued govt/health sys for oppressive practices are accepting CDC & co’s words at face value for convenience That’s why I’m a bit harsh in my judgement of ppl around me. Literally so many ppl I know are social science & humanities academics whose life’s work involves identifying & critiquing oppressive systems but they’re just not applying their usual logic to COVID

Tbh I once peed myself in public. Not a health thing. a drank 3 iced teas, forgot to go to bathroom before leaving restaurant & had to run around trying to find one in unfamiliar city at 1 am thing. But after that I decided to not be embarrassed abt stuff that didn’t harm ppl

https://twitter.com/butchanarchy/status/1594731989051052039

Thankfully this happened in NYC & no one batted an eye so there’s that too

So I’ve been admining a large Public FB group for 6 yrs.

Mastodon instances are similar to Public FB groups in some ways except *all* your post data lives there & can be deleted by admin if you’re kicked out. Moderating content is not easy. It involves a huge learning curve & lots of judgement calls on setting & enforcing rules.

For an FB group, you can get kicked out & it’s usually not a big deal bc you don’t lose all your posts.

Can confirm

Me & my brother went to elite private schools in Pakistan growing up & the diff in type of social education b/w my all girls school & his all boys school was stark

https://twitter.com/sdpowell1/status/1584391376220803073

Admittedly my school was run by nuns & when I went to visit it last time I was in Pakistan, I had to stop by the headmistress’ office & like everyone else on my trip she asked if I was married now & I said no & unlike everyone else she said “good. women should be independent”