Al

A pixel art portrait of Al

Hi, I'm Al

I'm a disabled New Yorker with a background in social science and public health research. I write to process things, document patterns, and blow off steam.
Since 2025, my disability has made writing significantly harder, and sporadic. It feels like a part of my soul has been eroded by the neurological damage.

But enough horrific despair!

BIFT stands for Before I Forget That: a personal philosophy around writing things down immediately and organizing information in ways that hold up under pressure. It's the principle behind most of what's on this site.

I care about accessible systems, patient and disability advocacy, and the gap between how institutions describe themselves and how they actually function. A lot of my reading, writing, and project work circles back to those themes in one form or another.

I also care about preserving my voice, and tracking snippets of it through the drafting.
Thanks to the glory of technology I can look back at the progress of my writing through university, with the papers written under professors really pushing the importance of key writing books to inform communication, and I can also reference the long and short writign I have done for and with friends.

As an austistic child I would be the overly open kid who would wander over to approachable strangers to knowledge-dump on them. Horses, cats, Star Trek, history and medical/scientific factoids.

This website has sections that feel like an extension of that.
The source files are ones that I can reference to:
'Oh, my style got more structured and tense when I did not have my pain managed' or 'The rough draft of this piece showed my cognitive hiccups/Oh this was a Dear Livejournal type depress-o-post.'

Most importantly: In writing I can moderate my voice. I can structure and revisit and revise. In collaborative settings writnig allows me regulating how I respond to things.

Projects and Tinkering

Writing Archive

Personal essays, longer pieces, and other writing collected in one place. Password protected, for only the nerdiest medical discipline.

On Camouflaging, One Straw at a Time

Eye contact is treated as evidence.
Hold it and you are listening, engaged, trustworthy.
Break it and you are hiding something, or not paying attention, or rude.

This is the entire cultural framework, and it is built on a frankly bullshit assumption that never gets checked:
Eye contact costs the same for everyone who performs it.

Eye contact, or other direct social attention giving, is exhausting.
It adds to a neurological burden.
Each instance of that awful camouflage reflex lighting up is basically a straw on my back.

Looking is not neutral.

I was taught to hold that gaze before I had language for what it cost.
Not coached.
Beaten into compliance until the performance became automatic.
Until I could produce something that reads as warm, present, attentive, on command while under threat.

This impactful little gesture actually draws directly from the same resource that turns sound into meaning.

Research using high-tech live dual-brain imaging has found that forcing autistic participants to fix their gaze on another person's eyes produces abnormally high activation in the subcortical system that processes faces, not reduced activation. The signal is not absent. Basically, the input is flooding in faster than it can be processed.

A 2024 interview study of nine autistic adults found the same thing from the inside.
Several described losing the ability to speak while holding someone's gaze, and regaining it the moment they looked away. (Mood.)
One participant put it plainly: he could look someone in the eyes for a few seconds and say nothing, but the words came back as soon as he looked away.

The same interview study found that autistic adults build deliberate systems to fake it.
Looking in the general direction of the eyes instead of directly at them.
Sitting at an angle to avoid a direct line (this is my personal favorite, especially for streaming/video chat).
Saying what needs to be said and only glancing up for a second afterward, as insurance.

Importantly: None of this becomes easier with repetition the way a skill does. It stays effortful because it is not a skill.
It is a performance run on top of the actual conversation, permanently.

One instance of forcing that gaze is generally survivable.
It is a straw.
And when the collapse happens I wish more people understood that nobody sees a camel collapse under just one straw.

But the straws do not reset between conversations.
They accumulate across a meeting, a day, a week of ordinary interactions that everyone around you assumes are free because you make them look free.

The exhaustion that follows has no single visible cause, which is exactly why it gets read as fragility, or mood, or making excuses, instead of what it actually is: cumulative neurological load with a compounding bill.

I am paying that bill quietly until I snap under the load.
My MS impacted CNS means that I need to take more breaks and not restrain myself.
I am freer with laughing, stimming, other That Girl Ain't Right behavior.

Even in public.

From a cursory skim of the MS community globally... I'm not the first or last person with MS to allow themself to 'act weird' to preserve energy levels and reduce CNS stress.
It just means I get to manage the load instead of absorbing it, and it means the people around me get to know what they are actually asking for when they ask for my eyes.

Sources:

Garvey, A., Ryan, C., & Murphy, M. (2024). Deliberate and self-conscious adaptation of eye-contact by autistic adults. Journal of Autism and Developmental Disorders, 55(7), 2272–2283. https://pmc.ncbi.nlm.nih.gov/articles/PMC12167331/

Cook, J., et al. (2021). Camouflaging in autism: A systematic review. Clinical Psychology Review. https://www.sciencedirect.com/science/article/abs/pii/S0272735821001239

HeyASD Editorial Team. Autism and eye contact: What it costs you to keep looking at them. https://www.heyasd.com/blogs/autism/autism-and-eye-contact