I am disabled and I am proud.

It took me a long time to realize that. I was 34 when I learned I was autistic, 35 when I first considered myself disabled. It took a long time to get comfortable with that word.

Ableism in society means we internalize contempt for the disabled.
So many disabled people don’t know they’re disabled, because they feel like normal human beings and they think “disabled” means something other than that. I was in this camp forever too. It gets programmed into us by society.
Some ways disability manifests:

Do you struggle with things that others have no problem with?

Are you spending more energy than your family or friends or coworkers to achieve the same outcome?

Are you tired all the time from living at your limits?

Huh.
Do you dread going to certain kinds of places because they’re too loud?

Do you avoid certain things so you don’t have to talk to anyone?

Do you live your life in constant terror of your own emotions seizing control and wreaking havoc?

These are disabilities. It’s fine.
Do you struggle with words? Are you ashamed because you can’t read as fast as other people?

Are numbers just impossible for you to reason about?

Do you stutter?

Do you feel unsafe in your day to day life?

Disability isn’t just wheelchairs and canes.
last point: so, so many people i know with invisible disabilities don’t feel entitled to use the word. It feels appropriative if you’re not obviously physically disabled somehow.

This is actually I think internalized ableism. We only feel comfortable using the word on The Other.
There’s no cutoff, there’s no disability police, and the only thing you’re doing by using the term disabled is wedging the definition open for more people to embrace their struggling selves. It’s a good thing. Embrace it!
More ways you might be disabled and not know it:

- you can’t fall asleep/wake up at “normal” times.

- you frequently find that people are upset with you after you speak, without knowing why.

- no matter how hard you try you can’t keep up with household chores.
(Manifestations of disability, continued)

You may have delayed audio processing - do you say “what?” a lot, only to catch up as they repeat themselves?

Try watching tv with subtitles, it’ll change your life.
Attention-related disability is real.

We talk a lot about adhd but honestly anyone who finds their mind wandering a lot, who can’t focus on tasks, who is subject to painful intrusive thoughts etc is dealing with a layer of struggle most people don’t have. That’s disability. Ok!
If you got Covid over a month ago and you still don’t feel recovered, REST! You have #longcovid and it could turn into ME/CFS. These are serious disabilities, not something to gloss over or push through.

If you aren’t facing that squarely you risk pushing yourself and suffering.
Sometimes you’ll hear people say stuff like “I’m autistic but I’m not disabled.”

This was me, at first.

In my humble opinion, this is 100% internalized ableism. What you’re saying is “I’m autistic but I’m still human”.
(This isn’t a callout post of autistics who don’t use the term disabled — it’s a call-in post for anyone who hasn’t worked through this stuff yet. It’s not your fault, society programs all of us.)
The real question is: why do we all grow up feeling like “disabled” means anything other than “fully human with some support needs”?

Why do people feel the need to defend their humanity by downplaying their disability?

It’s a false dichotomy! Blow it up!

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More from @mykola

3 Jul
You’re the main character, but you’re also the story.

The story is the main character in a story about itself, which is itself.

See?

What kind of story are you?
This is kind of what therapy helps with. Talk therapy is about telling your story over and over until the contradictions and compromises fall out.

In a very real way, getting your life together is a question of getting your story straight.
We are narrative animals. It’s the fundamental truth of our nature that we exist as characters within stories that exist within the confabulator running on our brain hardware.

No wonder we get confused! Reality is virtual, and those dynamics are non-obvious!
Read 4 tweets
3 Jul
Baldwin wrote about how our pain and struggles are universal. How the oppressed, along any axis, share some of the same identity-shaping forces.
But even beyond oppression - suffering is suffering. Oppressors and oppressed alike suffer, because to live is to suffer. And on that axis, we ARE all one.

Our work is to remove our own capacity to oppress, even ourselves.
Read 4 tweets
2 Jul
I think a lot about a guy I used to know. Undx’d adhd, in retrospect. We used to work together, at a college job. I knew him from age 18.

He was handsome and he was charming and he was wildly alcoholic.

He hurt a bunch of my female friends in ways I couldn’t understand at first
Alcohol made him uninhibited, and girls liked him, and he just… used them up. With no regard for their humanity. Serial cheater when in relationship, serial creep when not.
Ultimately he really hurt someone I cared about, and I cut ties with him. But I did it slowly and casually without making a big deal out of it, and I regret that.
Read 8 tweets
29 Jun
ME is one of the most debilitating conditions you've probably never heard of. Learn this today:

Most people with ME consider the CFS part to be dismissive and outdated. "Chronic Fatigue Syndrome" is such a misleading term that the doctor who coined it later apologized. #pwme
ME has always been with us -- some people, after they get a virus or have certain other kinds of trauma, experience ongoing symptoms that disable them for the rest of their lives.

During pandemics, we see waves of ME sweep across populations. Lots of #LongCovid patients have it.
But here's the catch: despite 9000 different biomedical findings in ME patients and despite ME being classified as a neuroimmune condition, there are still tons of doctors who treat it is as psychosomatic. Why?
Read 8 tweets
29 Jun
The one we never shipped, where we built a distributed graph database with a built-in compute fabric using event sourcing and immutable delta CRDTs.

The value is in what it taught me, from writing a binary format to wrangling Hadoop to how products can fail.
What if you wrote a database that didn't store state? What if you only tracked changes, via append-only logs of (hypernode) events carrying relational data between different nodes in your hypergraph?
What if state could be derived at any time from those changes? So you could pre-populate a downstream SQL database by parsing the changes and turning them into SQL writes. You could group events by target for quicker queries.
Read 24 tweets
26 Jun
This is a good question, what’s the difference between masking and simply using social skills that are maybe harder to learn?

Masking to me involves fear - a fear of being perceived as a fraud, a poser behind social skills, maybe? There’s an edge.
I’m having Interesting Thoughts based on some excellent replies.

What if what we call masking is a response to dealing with shame, and autistic people mask so much because we are taught to literally be ashamed of who we are?

Everyone masks a little, maybe. But we hide so much.
My advice to people who want to stop masking has long been “your shame is a map to those parts of yourself you were taught to hate, and so need more love.”

What if it IS that simple? Autistic trauma leads to toxic shame leads to masking.
Read 11 tweets

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