I attended the @CalSCDD Meeting in Sacramento yesterday to offer public comment on the Paid Internship Program (PIP). While there, the SCDD Executive Director & @MicaelaConnery (@TheKelseyMore) offered a beautiful narrative on why society has moved away from institutionalization.
Both talked about how loving intent from citizens drove California to create institutions for developmentally disabled people 170 years ago. However, both also discussed how increased understanding of disability helped California realize the harm that institutionalization brings.
Where institutionalization of developmentally disabled people was once the norm in California, in the last decade the state has undertaken an effort to close its institutions and support institutionalized residents as they are returned to integrated community living.
Despite this development, a small but dwindling remnant of family members and organizations have fought against the right of disabled citizens to live in an integrated community setting with support. Hearing both Connery and the SCDD ED speak with empathy for them was powerful.
It reminded me that non-disabled viewpoints on disability issues are often rooted in care & love, even when those viewpoints are wrong and lead to our marginalization and harm. Our work in disability advocacy must recognize & honor intent, even where intent serves as an obstacle.
This is tricky work for disabled people and allies to do - to say “I appreciate and honor your intent, but your intent is serving as an obstacle to my normalcy, accomodation, and societal integration.” It’s almost a magic trick to say both “thank you” & “I must stand my ground.”
This bleeds into almost every aspect of life for the disabled person. It’s central to the criticism (and assurance of success) of employment approaches for autistic people and #AutismAtWork programs. It goes to housing, transportation, friendships, relationships, to all of life.
Non-disabled people often don’t recognize the pressure cooker in which their intent places the disabled person (although friends who are people of color often instantly recognize this). We constantly have to ask ourself “Do I smile here, or do I shout?”
That is a horrible place to be, but one in which the disabled person often finds themself. So to see two people like SCDD Executive Director Aaron Carruthers & Micaela Connery of ‘The Kelsey’ exercise themselves as allies to speak to that at the SCDD Meeting was wonderful to see.
Honoring the intent of those who often stand in the way of our progress, even unintentionally so, is a difficult task. I appreciated seeing two allies undertake that difficult, delicate work on our behalf.
Thank you.
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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.