I’m spending #WorldAutismDay in the hospital dealing w/ the effects of #COVID_19. A lot of things got me to to this place, including our society’s failure to understand autistic people and our needs.
Do not worry about me. This is very scary, yes. But I trust I’ll be fine. I’m having difficulty breathing, but my oxygen levels are good (the most important thing).
Turn that focus and energy into connecting with each other and keeping those around you safe.
When I first talked to a nurse on the phone in determining next steps, she threatened to hang up because I was yelling at her. I wasn’t. She didn’t understand and wasn’t trained on how autistic speech often sounds.
This happens to autisic people a lot. It’s a health threat.
Imagine a world where our health needs are understood, where all our needs are understood.
We have a wonderful future ahead for #ActuallyAutistic people, our parents, and our families. But, we’ll only get there if we empower autistic people and if we lead.
❤️♾
And THANK YOU health professionals!!!
Last night was actually the scariest. I texted a couple of key friends with my status and instructed them to call me if they didn’t hear from me by a certain time this morning. I also placed this note next to my bed.
I am feeling much less fear and anxiety now.
🌈
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Someone wrote that Judge Amy Coney Barrett would bring “heart” to ‘special needs’ if confirmed to the #SupremeCourt. After showing my respect for the person who wrote that, and understanding of where they were coming from, this was my response:
“Disabled people don’t need lawmakers or jurors to bring “heart” to ‘special needs’. That’s what has led to patronizing policy which has f%¥ked over the exercise of our equality and marginalized our full participation in society over-and-over-and-over again...
It’s one of the greatest things we organize and fight against and we will continue to fight against it until the law and policy makers recognize that we are just like everyone else...
The whole #BobWoodward thing reminds me that our better politicians understand the press will try to ‘get’ them, and that’s a good, healthy thing for our democracy. They respect and welcome that.
—> It’s a BS check.
Bad politicians think the press is there to serve them.
*I should say it’s not as much that the press tries to “get” politicians, but that they don’t regard a politician’s messaging priorities when they are reporting stories. That’s an amazing thing, and when I was a press officer it drove me up the wall.
I hated it, but I loved it.
And the #BobWoodward tapes remind me of #LouChibarro of the @WashBlade. When I was a press officer, he was so masterful in asking a question, letting you answer, then NOT SAYING ANYTHING.
The subject felt compelled to fill the silence with more information.
👨🍳💋
So, while I very much *feel* #SpoonTheory in my being, it all falls apart when trying to use it as a metaphor with others (or as an accommodation strategy for myself). I constantly miscount and lose them.
When speaking, or in meetings, I’m often asked by folks to explain spoon theory. I usually just turn to someone I trust and ask “Could you explain it?”
For myself, I’ve learned to just make myself stop, slow down, or turn down requests when needed — and to be ok with that.
I mean, I’m a huge supporter of spoon theory as a metaphor to explain things to others and as an accomodation peoole can use themselves. It just all gets tangled and anxiety-inducing for me.
I love to laugh at that, though. You kind of gotta.
I often think on how research, medicine, and psychiatry approach and ‘treat’ autistic people today in the exact same manner they approached and ‘treated’ homosexuality until 1972.
Then, thanks to #LGBTQ advocates, homosexuality was suddenly ‘cured’ by @APAPsychiatric overnight.
Where are the endless research papers about the genetics and epigenetics of gay people?
Where are the warnings of “risk factors” for lesbians?
Where’s the pleading for “early intervention” for bisexuals?
What about environmental factors?!?!
We probably know less about gay people now than autistic people. But, we know enough not to funnel everything about LGBTQ people through a pathological frame.
All the questions we ask about autism are still there (and largely unanswered) for LGBTQ people.