Friction - Blog Posts

just wanted to share the National Down Syndrome Society’s message for this year’s World Down Syndrome Day (21st March) 💛💙

It's the last weekend of data collection for my thesis survey on disability, so if you're 18 or older and identify as disabled or partially-disabled (even if you live outside the U.S.) I'd love to hear from you! The survey is about how social friction is perceived in interactions between disabled and able-bodied people, and takes about 15 minutes to complete. It's also completely anonymous.

As an incentive for participation, there's an optional raffle that you can participate in for the chance to win an Amazon gift card (yep, even if you live outside the U.S.).

"Let Me Get That For You": Analyzing Frictional Situations in a Disability Context (via Google Forms)

Big thanks to everyone who has already completed the survey, and if you fall into that group, you don't need to take it again.

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This research survey has received approval (IRB number 2025-037) from Delta State's Institutional Review Board.

every time anyone talks about liberation for the intellectually disabled in any real material way (i.e. creating plain-language educational resources accessible to adults reading on a first-grade level, detangling literacy from basic requirements to participate in society, destigmatizing inability to benefit from pedagogy, criticizing the construct of financial literacy as a necessary skill, etc etc etc), some chud comes along calling it "anti-intellectualism" and blabbing about how you're a morally inferior person if you only read middle-grade novels for fun, i'm so tired and we are never making it out

I realized the other day that the reason I didn't watch much TV as a teenager (and why I'm only now catching up on late aughts/early teens media that I missed), is because I literally didn't understand how to use our TV. My parents got a new system, and it had three remotes with a Venn diagram of functions. If someone left the TV on an unfamiliar mode, I didn't know how to get back to where I wanted to be, so I just stopped watching TV on my own altogether.

I explained all this to my therapist, because I didn't know if this was more related to my then-unnoticed autism, or to my relationship with my parents at the time (we had issues less/unrelated to neurodivergency). She told me something interesting.

In children's autism assessments, a common test is to give them a straightforward task that they cannot reasonably perform, like opening an overtight jar. The "real" test is to see, when they realize that they cannot do it on their own, if they approach a caregiver for help. Children that do not seek help are more likely to be autistic than those that do.

This aligns with the compulsory independence I've noticed to be common in autistic adults, particularly articulated by those with lower support needs and/or who were evaluated later in life. It just genuinely does not occur to us to ask for help, to the point that we abandon many tasks that we could easily perform with minor assistance. I had assumed it was due to a shared common social trauma (ie bad experiences with asking for help in the past), but the fact that this trait is a childhood test metric hints at something deeper.

My therapist told me that the extremely pathologizing main theory is that this has something to do with theory of mind, that is doesn't occur to us that other people may have skills that we do not. I can't speak for my early childhood self, or for all autistic people, but I don't buy this. Even if I'm aware that someone else has knowledge that I do not (as with my parents understanding of our TV), asking for help still doesn't present itself as an option. Why?

My best guess, using only myself as a model, is due to the static wall of a communication barrier. I struggle a lot to make myself understood, to articulate the thing in my brain well enough that it will appear identically (or at least close enough) in somebody else's brain. I need to be actively aware of myself and my audience. I need to know the correct words, the correct sentence structure, and a close-enough tone, cadence, and body language. I need draft scripts to react to possible responses, because if I get caught too off guard, I may need several minutes to construct an appropriate response. In simple day-to-day interactions, I can get by okay. In a few very specific situations, I can excel. When given the opportunity, I can write more clearly than I am ever capable of speaking.

When I'm in a situation where I need help, I don't have many of my components of communication. I don't always know what my audience knows. I don't have sufficient vocabulary to explain what I need. I don't know what information is relevant to convey, and the order in which I should convey it. I don't often understand the degree of help I need, so I can come across inappropriately urgent or overly relaxed. I have no ability to preplan scripts because I don't even know the basic plot of the situation.

I can stumble though with one or two deficiencies, but if I'm missing too much, me and the potential helper become mutually unintelligible. I have learned the limits of what I can expect from myself, and it is conceptualized as a real and physical barrier. I am not a runner, so running a 5k tomorrow does not present itself as an option to me. In the same way, if I have subconscious knowledge that an interaction is beyond my capability, it does not present itself as an option to me. It's the minimum communication requirements that prevent me from asking for help, not anything to do with the concept of help itself.

Maybe. This is the theory of one person. I'm curious if anyone else vibes with this at all.

A disabled woman fell on the bus I'm on and I'm literally the only one who listened to her and didn't try and pull her up when she said she wanted to sit for a second, or crowd her saying what she should do next.

Can we actually listen to disabled people maybe? This is exhausting.

Every country should have options for free/affordable accomodation for disabled people who don't want to live with their families and I'm so serious. Personally I'm in the process of realising that my current living situation is actually making me feel miserable lmao, and I was fortunate enough to stumble upon an opportunity to live somewhere else, where I would have 24/7 care without having to see my parents every day. I'm still on the waiting list, but it honestly can't come soon enough. The codependency between disabled people (especially people who were born disabled) and their parents isn't talked about nearly enough (or at all?) and it's a huge fucking shame because I think that if it was more present in the discussion on disability rights, there could be more tools in place to help disabled people who want to be independent from their families while still receiving the care they need.

And still it feels like it's not talked about because families should "stick together" and "sort it amongst themselves" and their disabled relatives are "their cross to bear". Like. Has anyone asked the disabled people in question whether they want to be their family's cross to bear? Whether they want their parents to be the people they see and talk to the most throughout the day? Whether they want to have only them to depend on, and if they were both sick or something, then I guess they're fucked lmao?

So. Accomodation for disabled people who seek independence from their families. Now 🤲🏻

Just something I really want to share on here because it’s important.

So many people wouldn’t have asthma in the first place if it wasn’t for these corporations…Shifting blame from actual culprits to people with asthma (and people who can’t help but use plastic straws at that) is peak capitalism.

My husband and I became catechumens in the EOC for which we are incredibly grateful. Here’s my dilemma though.

I can’t attend Divine Liturgy because of my chronic illness. The priest is very understanding of this and is genuinely trying to accommodate us the best anyone can.

He wants us to get plugged into the community despite my limitations and is thinking of safe ways for us to do so, since I am immunocompromised and my husband (who has lupus) is also facing potential new health concerns. Though we want community as well, I am having debilitating anxiety around it.

My illness is so unpredictable. I have good days and bad days. Some days, I need my wheelchair or another mobility aid (which I don’t like using because I don’t like being vulnerable but I NEED to use them for safety and/or energy preservation). But other days, I do not need anything. Chronic illness has SO MANY facets and triggers and layers of unpredictability! In the past, many people (mostly people from our old church) have accused me of faking my disability when they’ve seen me on a good day, or when they’ve seen me without a mobility aid after needing one a previous day. They’ve told me I’m making excuses, that I’m faking for attention, etc.

No one but my husband ever sees the “details” of my chronic illness, after all. They don’t see me when I’m curled up all night on the bathroom floor bc of gastroparesis agonizing and crying for it all to end, or being SO extremely fatigued due to POTS that I can’t move a limb out of bed. They didn’t see me when I fell that morning which warranted me using my rollator for the rest of the day to prevent another concussion. They don’t see the painful internal struggle of trying to walk in the summer heat without support. Anyone with a chronic illness can relate!

People from my last church (not an OC) said hurtful things and more and told me I’m going to hell for a number of reasons- because I don’t have kids, because I don’t go to church on Sundays etc. i had poured my soul into that parish. Then, everyone left. We felt abandoned.

This served as the catalyst to question our faith -tradition, theology, and everything- and ultimately, everything came together to lead us to Orthodoxy which is a HUGE blessing! But I’m just SO EMOTIONAL because though I’m more than ready to embrace the fullness of faith and the Sacraments when the time comes, I don’t think I can ever be a part of a community.

It’s exhausting to have to try to explain the ins- and- outs of my illness to new people, many of whom wouldn’t even believe me. And I just don’t want to get hurt again. I know it’s wrong of me to assume that every new person I meet will eventually judge me and leave, but that’s just what we’ve consistently experienced. That’s all we know. I have a small circle of friends, and I’ve known all of them for many years - those friendships have stood the test of time and I’m grateful for them.

I honestly don’t know why I’m making this dumb post. I’m not trying to throw myself a pity party, I just need a place to vent and let it all out. I’m also just in a totally bad headspace right now and my anxiety levels overall are insanely high with my husband preparing for a high stakes surgery in a few days and me having side effects from the rescue medication I had to take last night. But if you’re reading this and have any advice, please tell me. And please pray for us. Please pray for peace and healing in our lives, spiritually, physically, and emotionally. Please pray that i can stop myself from spiraling into depression - I can feel it happening. I feel like a burden to my husband and the few friends I have and the devil is probably angry that I made the decision to become a catechumen. Please pray that we can find joy this Pascha, even though we are separated from the Church, knowing that we rejoice in Jesus’s resurrection. The pain runs deep but His love runs deeper.

Thank you. 🤍

one of my absolute favorite conversations i have with random gentiles goes like this:

me: i face a lot of harassment and weirdness when i wear a kippah and star of david in public.

gentile: ok but u could just not wear them.

me: i mean yeah but i do.

gentile: but u could just not wear them and then ppl wouldn’t harass u and be weird to u.

me: yeah maybe but i do wear them.

gentile: but u have the option not to.

me: correct. but i choose the option to wear them.

gentile: but if u didn’t wear them then no one would know.

me: sure. but i do wear them.

and it goes round and round and round in a circle for like 20 minutes bc goyim cannot comprehend why i would not want to just shut up and assimilate.

anyway here’s ur reminder that telling ppl who are being oppressed or discriminated against to just hide whatever it is that people are targeting them for is contributing to said oppression and discrimination. forced assimilation is violence, and telling people “just don’t do/wear/say x thing that’s a core part of your identity” makes you complicit in that violence, if not actively a part of it.

People love to talk about whether or not disabled people can work

but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more)

Dead silence. Nobody cares.