January 15, 2020

Institutionalization and Daryl Hannah and autistic people like me

Posted in Marginalization, Uncategorized tagged , , , , at 6:20 pm by chavisory

[This post is slightly expanded from a recent Facebook comment]

A friend posted this article about Daryl Hannah this week, which is a few years old, and which I enjoyed very much despite the totally melodramatic and unnecessarily stigmatizing headline (which she probably had no role in choosing).

And though the fact of Hannah’s autism, and the fact that autistic people can and do succeed at counter-intuitive, high-visibility careers like acting, is old news by now (and Sense8 has sadly reached the end of its run), I think it’s especially worth drawing attention to one aspect of the article, because it bears on an issue that is still very much under discussion in the autism community.

In particular, the childhood history Hannah relates really highlights how the gulf between autistic people whose parents and professionals say need to be in institutions because of the severity of their autism, and those of us who they say are “mildly affected” and just can’t understand, is just not what they assume it is.

Daryl Hannah is someone who could well have been institutionalized, had her parents believed the doctors who recommended it. And then anything that happened to her there, any deterioration of her condition, any given set of skills or knowledge she failed to acquire as a result of institutionalization, would have been used as evidence that she belonged there and not as evidence of injury by institutionalization. She’s probably right that she’d still be there today.

And today, she’d be being held up as an example of someone whose condition was so severe, whose daily living skills and ability to exercise autonomy was so lacking, that it was clearly understandable to institutionalize her, rather than someone who’s so outrageously successful her autism obviously can’t be that serious. Or that even if she is, she shouldn’t talk about it or use that label for herself because it takes attention away from autistic people with more intensive support needs.

When really the only difference is in the kind of chances she was given.

I know I’ve quoted my high school math teacher before, who said “A lot of times kids will ask me, ‘When am I going to use this?’ And the answer is, ‘Probably never.’ But if you don’t learn it, you definitely won’t.”

Someone never genuinely given a chance to live and grow in their own community, never will.

Daryl Hannah narrowly avoided institutionalization. And for all that some factions of parents and autism professionals will say that this isn’t really about autistic people like me or Daryl Hannah, for as different as they say I am from autistic people who they insist really do need to live in institutions, frankly, if it could’ve happened to Daryl Hannah, it could’ve happened to me.

I don’t think somebody else’s kid really does belong in an institution because their support needs really are greater than Daryl Hannah’s, or mine. I think they deserve to live in their communities as much as she or I do.

I think the rest of us would be as fortunate to have a chance to know them and have them in our lives as much as we are for the pleasure of having Daryl Hannah’s art in the world instead of having her locked in an institution while we’re told why she really belongs there.

January 5, 2020

Conscientious objector resources & alternatives to military service

Posted in Uncategorized tagged , , , at 3:09 pm by chavisory

I did not hope for this to be my first post of the new year, but as the situation in Iran and Iraq has quickly become more volatile and concerning, this is courtesy of a friend of mine who wanted to put this information out there without being credited by name.

If you are currently in the military and concerned about deployment or considering claiming conscientious objector status (which I did not know, but apparently you can pursue even after you have enlisted), or you are not currently enlisted and seeking alternatives to military service, below is some information that might help.

With hope for a more peaceful new decade for us all…

***

“If someone you know is in the military and wants to make sure they’re not hauled off to kill or die to boost Trump’s approval ratings, here’s some basic info and a hotline # for pursuing a conscientious objector discharge:
https://girightshotline.org/…/conscientious-objection-disch…

“If you know someone who hasn’t enlisted yet but is considering it as a way to get healthcare, free college, job training, etc, the Quakers have help finding other ways to get those needs met. We need Medicare for All and free college, but in the meantime, scroll down for free downloads and regional guides on what’s out there now: https://www.afsc.org/resource/alternatives-military

“And if it comes to it, while the maximum penalties on the books for going AWOL are brutal, but they haven’t been used since 1945. In practice the Pentagon only charges 5% of soldiers who quit, and only 1% receive any sentence. Compared to being asked to kill innocent people or get killed in pointless war, getting out is both the right and the smart thing to do. http://nymag.com/…/…/what-happens-to-most-awol-soldiers.html

December 31, 2019

Cold twilight

Posted in Uncategorized tagged , , at 4:24 pm by chavisory

IMG_0732

Wishing you all a restful, happy new year! I’m hoping to get back to writing a little bit more regularly in the new decade than I’ve been able to recently. In the meantime, enjoy this view from an evening walk in my hometown over Christmas!

November 1, 2019

Would you believe your own child? (Autistics Speaking Day 2019)

Posted in Uncategorized tagged , , , at 11:42 am by chavisory

For Autistics Speaking Day this year, I actually have a question for parents.

If you’re the parent of an autistic kid, and you have ever told an autistic adult (or are still in the habit of doing so), “If my child could speak or write like you, I would consider them cured…” or anything along those lines…

What if they could?

What if some form of treatment or therapy, that currently exists or that might yet be developed, works, and your autistic child gains the ability to share their thoughts in speech or writing?

And what if they said to you, “But I’m not cured.”

What if they said “I am working so hard, in ways I don’t even know how to explain to you.”

“I am so tired.”

“This is draining all of my cognitive and internal resources and I don’t know how long I can actually keep it up.”

“Maybe this looks easy to you, but it feels like my brain is swimming in molasses or doing complicated gymnastics to me.”

“Yes, I can talk, but you’re still speaking a foreign language and every time I answer you I’m carrying out a multistep process of translation and back-translation.”

“I was a real person this whole time. I heard every word you said.”

“I’m actually engaging in this act of elaborate fakery which makes me exhausted in order to make you happy because apparently that’s the only way I get to have rights or choices.”

(Or just because it hurts for you to be so unhappy with me all the time.)

“Sometimes being autistic is hard but sometimes it’s wonderful. I don’t need to be changed as much as I need other people to respect that I exist in the world differently.”

Would you believe them?

Or would you say “No, you’re cured! You’re not autistic anymore.”

Or “That’s great for you, but some people are really disabled.”

Or “You must be very high-functioning.”

“But some autistic people can’t communicate at all.”

“Not everyone is like you.”

“What gives you the right to speak for all autistic people?”

Is that what you would say to your child, if they were to gain an ability you say you dearly wish they could, if they were able to illuminate for you some aspect of why things are difficult for them in the ways that they are?

Would you treat them the way you treat other autistic people who’ve committed the sin of being even slightly articulate on the internet, and saying things like “I think we all deserve acceptance, I think our needs deserve respect, I think we all deserve not to have to live in institutions, I don’t regret my life the way it is?”

We often say that the way you treat autistic adults now is how you’re teaching other people to treat your child when they’re older.

You’re also telling your child how you’d treat them if, heaven forbid, they actually accomplished what you say you want.

And if that’s not how you would talk to your kid if they could speak or type, if they could translate their thoughts and wishes and experiences of the world to you…

Then why is that the way you talk to autistic adults you’re so convinced don’t have anything in common with your child now?

A few years ago, Maxfield Sparrow asked, in a post for We Are Like Your Child, “Do you believe in your children?

My question is… Would you even believe your child? If they said the kinds of things you say you wish they could say?

September 7, 2019

Nighttime visitor

Posted in City life, Uncategorized tagged , , at 1:04 pm by chavisory

IMG_0460
Well hello, friend!

[Image depicts a bright green cricket hanging out on the inside of a white paper lantern in a dark kitchen at night.]

August 28, 2019

A note on blog policies

Posted in Uncategorized at 9:08 pm by chavisory

Hi everyone!

So if you’ve ever gotten around to reading my About section, you’ve seen that I have a contact e-mail address for this blog.

The reality is that I do not get around to checking this address very often. I’m trying to get better about that, but the reality is that I have kind of a ridiculous and unpredictable work schedule that often leaves me with very limited bandwidth for non-work related communication for months at a time, and if your message is time-sensitive, there’s a good chance I won’t see it in a timely manner.

A lot of the messages that I miss have been asking for my permission to share, cite, or mention my work for another blog post or article or campaign, and I just totally didn’t see it in time to respond in a useful way.

So this is just a reminder that this blog has a Creative Commons License. It’s an Attribution/Non-Commercial/No-derivatives license, and it already lays out most of the terms under which I’m okay with my work being used, but basically, you do not need my explicit permission to quote anything I’ve written, to mention it, to cite it in academic work, to link back to it, to print it out and make copies for students to read, or to use it in a way that would legally be considered “fair use,” as long as you accurately credit/ attribute the authorship to me.

I do ask that you not use it for commercial purposes, or change and then redistribute it.

Otherwise, go to town. Have fun.

(Of course, if you’re using one of my posts in an educational setting or academic work, if you’ve shared it and people have found it helpful, I would love to know about it, but you don’t need my advance permission to do it. If for some reason you need my actual full name for a citation to satisfy someone else’s requirements, then do please e-mail me. I will give it to you, but I don’t publicize my real name here.)

August 16, 2019

Betrayed on Sesame Street

Posted in Uncategorized tagged , , , , at 2:37 pm by chavisory

I wrote this story down intending it to be part of a different post entirely, about a particular set of musical experiences. I didn’t really want to be telling it for this, but here we are.

A few years ago, shortly after Sesame Street came under fire from the autistic community for its participation in Autism Speaks’ annual Light It Up Blue campaign, I was one of many people, invited through various organizations, to give feedback on development of the “See Amazing” web materials, centered on the character of a 4-year-old autistic girl.

I didn’t have any illusions that our feedback would all be incorporated or that the end result would be everything we wanted, but it was a chance worth taking that some of it would be, that we could affect on a really basic level what American children learn about autism.

And what might be some of the earliest representation of themselves that autistic children ever see.

I got very busy, and when the campaign was finally released to the public, amid a flurry of mixed reviews from the autistic and parent communities, I just didn’t have the bandwidth to engage with any of it. But some of the criticism was confusing to me based on the initial materials I’d seen, which had been deeply imperfect, but also far from being anywhere as offensive as many mainstream depictions of autistic children or characters. There were fallacies that I hoped would’ve been corrected; there were places where I hoped the focus or language would be shifted, but for a curriculum set aimed at preschool-aged children, it had had a lot of good potential. Of course different people can have sincerely different reactions to the same thing, but it made me wonder whether the final product had somehow gotten much worse than it had started.

I was too afraid to find out.

Spring of 2017 came and, once again during a week when I just didn’t have spoons to spare, the announcement that Julia would become a real muppet, and not only a web character, and another wave of commentary that I didn’t feel I could usefully engage with until I had my own opinion of the results. But I hadn’t watched any of it. I just didn’t have it in me. Although assertions like “obviously they didn’t talk to autistic adults” made me furious, as I knew that they had. I didn’t know what the impact of our contributions had been, or if it had been disregarded entirely.

Finally one morning I knew it was past time that I caught up with Julia, and clicked on a video, of Abby Cadabby and Julia singing the Sesame Street theme song together. It started with Julia alone with her bunny, humming to herself, before Abby joins her. I assumed I knew how the skit would go. Abby would join in and sing along, Julia would keep humming, and they’d finish the song together, each in her own way. Cute. Mostly harmless.

But then after Abby sang a line, Julia started singing, too, and my jaw hit the floor.

I couldn’t figure out how they’d come up with it; I had never told anyone about this yet. I had never seen this portrayed or described anywhere.

Julia’s echolalia worked just like mine.

And the message wasn’t “See? She can be included too, even though she has autism!” She just was. It was that her echolalia was just like mine, and it was just …okay.

I have seen a lot of autistic characters portrayed in media. I’ve felt genuine kinship with some of them.

And I had never, ever seen that.

And yes, the portrayal of the character and the way her story was told was imperfect in many ways, but that mattered, and it was something I wanted four-year-old autistic kids, and four-year-old non-autistic kids, and their parents and families, to see

That the way we do things can actually just be allowed to be okay.

I went back to the notes that I’d submitted to see if I could figure out if I’d said anything that could have caused this, but I hadn’t really. It was extreme serendipity, or something someone else had suggested, or that the alchemy of all of our input together had made such an extrapolation or leap of understanding possible, I guess.

Research even showed that exposure to the program measurably increased parental feelings of competence, acceptance, and hope for their autistic children’s potential to be included in the their communities.

And it made what happened next all the more a betrayal of our input and good faith.

This week ASAN announced the end of its partnership with Sesame Street and the “See Amazing” program, after the show leadership declined to reverse course from its decision to use Julia to advertise Autism Speaks’ 100 Days kit, notoriously full of stigma against autistic children and poor-quality information.

A friend asked whether any of us are truly surprised by this development, and the answer, I guess, is no, not really. But it still hurts, like so many things that happen to us again and again and again and yet still hurt, every time. Like so many things that you see and hear when you’re an autistic person at all engaged with a popular media that presumes people like you aren’t watching or listening.

But God, there was so much reason to hope this time.

I really think Sesame Street owes the autistic community, and every family for whom Julia’s inclusion had been a positive development, an explanation for this.

July 4, 2019

Posted in Uncategorized tagged at 11:30 am by chavisory

IMG_0299

And I don’t know a soul who’s not been battered,
I don’t have a friend who feels at ease.
I don’t know a dream that’s not been shattered
Or driven to its knees.

June 16, 2019

Pigeon standoff

Posted in City life, Uncategorized tagged , , at 11:53 pm by chavisory

It isn’t uncommon for me to wake to the sound of cooing or scratching pigeons–my building is bordered by alleyways on two sides–but one morning earlier this week, I was woken by that familiar sound… slightly too inside my window instead of out.

pigeon standoff
[Image description: A large, dark gray pigeon perches atop a stack of journals on top of my chest of drawers, beneath a photograph which he’s knocked askew.]

We had a little bit of a standoff while I caught my breath, figured out what to do, and naturally took a picture. Remembering a childhood incident in which a big crow had come down our chimney and gotten itself trapped in the living room, I opened the window wider and pulled the curtain aside so he could clearly see the only way out of the room, and a moment later he was …off on a different adventure for the day.

May 27, 2019

I identify as tired

Posted in Uncategorized tagged , , at 9:03 pm by chavisory

I started wondering something explicitly for the first time recently, and that is: How many autistic kids who fly under the radar for years, or forever, present primarily to non-autistic observers as exhausted?

I wonder this as I continue recovering from a recent production, and my main problem is just that I’m so exhausted. If I get up at 10:00 AM, I need a nap by 4:00 or 5:00, and not for having done all that much in my waking hours. Every time somebody has made me exercise the slightest amount of planning ability outside of work, I just want to cry. It’s taken my writing brain a couple of months to even think about coming back online. And transitions are still the worst.

But mostly I’m just so tired.

And I look back on being a kid and obviously there was so much that I just had no frame of reference to explain, but one of the things that was apparent, even to me, even when I was really little, was that other people didn’t think I should be so tired. In grade school I was too tired to talk to a friend on the bus ride home instead of just staring out the window at the sunlight flickering in the trees. In middle and high school (on the afternoons I got to come home), I needed a two-hour nap before I could regroup and start thinking about dinner and homework, and people just didn’t believe I was too thrashed from a day of school to do much of anything else before that happened.

While there were things that I couldn’t do at all and had no way to justify why, a fair amount of the time, it wasn’t that I just flatly couldn’t. It was that I could do what was demanded by school or social activities, or at least perform a superficial but apparently somewhat convincing pantomime thereof, for a sharply limited amount of time, and it took absolutely everything out of me to function that way until I couldn’t anymore, and then people didn’t understand why I couldn’t anymore.

And sometimes it was actually that something more specific was the real problem, like having trouble transitioning, or not having the verbal bandwidth or social knowledge, or having motor planning trouble. But I didn’t have words for any of that, and the closest approximation I had available was often “I’m too tired.”

“Why?”

“I don’t know.”

I mean, I didn’t.

I’m more embarrassed of it now than I was when I just didn’t know that I shouldn’t be that tired, and what the reason was. It’s one of the probably top three things I feel like I have to hide in terms of being autistic and doing what I do for a living.

That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse. That to you that’s just how humans work and to me it’s like performing an extremely high-level game of mental and physical coordination.

That there are a lot of things I’d like to accomplish but I flatly don’t have the energy.

That when people suggest I do things like ~go to grad school~ or ~run for office~ it is hard to admit “Okay, do you know how much of my available energy I am currently using just to hold my life together and meet my obligations to the extent that I am right now?”

All of it. It’s all of it. I’m not just skating here.

And that’s not even from masking or passing or pretending not to be autistic. That’s just getting the stuff done that I have to get done. The cost of masking is above my price point.

That what you are talking about is so far beyond my capacity to think in extremely abstract ways and be on the hook to communicate about for that much of the day and do high-level strategic planning/networking and also do the work of holding my life together. And also write papers?!

Why don’t I run for office? Why don’t I teach college? Because I can’t actually speak for more than about two cumulative hours per day, and it helps if even all of that time isn’t consecutive; why don’t you become an astronaut if that’s what you really want? Oh, what’s that? You don’t have the resources, either internal or external, to go back to school for a terminal degree in math or physics or astronomy followed by years and years of physical conditioning?

Okay. That’s close to the energy differential we’re talking about here.

“Twice exceptionality: When your test scores write checks your actual abilities can’t cash,” is how a friend put it once.

There’s a presentation of autistic reaction to unmanageable demands that gets called Pathological Demand Avoidance… and while I have a lot of problems with how that’s framed, I think it may be “real” insofar as being a recognizable pattern of coping strategy in the form of exhibiting disproportionate, preemptive or protective defiance to what seem like normal, commonplace demands to a non-disabled adult.

I think there might be another one in which autistic kids, whatever they’re feeling, try and try and try and try and try to meet adult demands to the point where they wear themselves out trying, or get fed up with the Kafkaesque paradox wherein no matter how well they manage, the outcome is even heavier demand on their limited abilities to manage.

Anyway, I wonder…in light of admittedly anecdotal personal experience, how many autistic kids—not that they don’t show other signs, but which might be misattributed or considered “quirks” or misbehavior—how many kids primarily have it noticed that they are so frequently so tired, and there’s not an obvious physical reason why?

To the next person who says to me “How are you really disabled?” or “I don’t see how you’re autistic,” I’m going to be hard-pressed not to reply “I am so goddamned tired.”

tiredHannah Gadsby, another autistic performing artist who is tired.

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