August 8, 2020

Mushrooms and minor updates

Posted in Uncategorized tagged , , at 11:37 am by chavisory

IMG_1200I went hiking a little bit upstate last week and saw some beautiful bracket mushrooms. I climbed Sugarloaf Hill in the Hudson Highlands, and it was fascinating to see how much the ecosystem changed along the way even in a relatively small elevation gain. Further up this same trail was cactus.

Also I once again have a couple pieces in the newest issue of Fuckit: A Zine, the “Vote Motherfucker Vote” issue–one poem, one essay about hope in fundamentally unpredictable times, weird dreams, and Game of Thrones.

May 14, 2020

Elsewhere

Posted in Uncategorized tagged , , at 9:52 am by chavisory

Hi all!

Just wanted to let people know if you’re interested that I have two pieces out in other places this week. First, in issue #2 of “Fuckit: A Zine,” a short musing on prayer and Call the Midwife. It’s available here.

And second, I have a new post, “Why Doesn’t Respect For Communication Diversity Include Non-Speaking Autistic People?” at the Thinking Person’s Guide to Autism, here!

I hope everyone is holding up okay and getting to enjoy spring at least a little bit!

 

April 14, 2020

In thanks for the legacy of Mel Baggs

Posted in Uncategorized tagged , , , , at 12:59 pm by chavisory

As much of the autism and disability rights communities have heard by now, writer and activist Mel Baggs passed away suddenly over the weekend, after years of complicated health issues as well as medical neglect and denial of sufficient home and community-based services.

While Mel was multiply disabled and often emphasized that sie felt more solidarity with the developmentally disabled community more broadly than sie did as simply autistic, sie also wrote the very first thing I remember, specifically about autism, that made me see myself. I remember sitting on the floor of my bedroom in my last apartment in Athens, GA and feeling my world kind of turn inside out as I read words that could’ve just been written about me. I was 21. So while it’s not as if I’d known hir all my life, Mel was inherently part of the world as I knew it, in which I knew myself in important ways.

Mel was, in ways, much more intensively disabled and had much higher support needs than mine. Sie could not speak, most of the time. Sie didn’t live independently. Sie had been institutionalized. Sie wrote about times when people looked at hir and assumed that sie could not think, or had the mind of an infant.

And sie wrote in a way that made me see myself in the world more vividly than almost anyone else would for a very long time.

So when people say things like “We aren’t talking about autistic people like you” when they talk about the autistic people they are sure need to be cured, prevented, controlled, institutionalized, or who they assume “just can’t communicate,” think, understand, or learn, Mel is one of the foremost reasons why I know they are wrong. That they are talking about autistic people like me, and that neurodiversity, presumption of competence, disability rights, and human rights, are for all of us. Every single one.

Mel was like me. And I am like Mel. Not in every way, but in important ways.

I didn’t know Mel personally but had the honor once of editing hir work. My mother said “So you felt like you knew her,” but really, it’s more like my entire generation of autistic people felt like we knew ourselves because of hir.

If you’ve never seen Mel’s video “In My Language,” it was truly a groundbreaking piece of media not just about autism, but about the sheer diversity of human thought and language and possibility of communion with the world.

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.

October 13, 2016

Posted in Uncategorized tagged , at 2:01 am by chavisory

I know it’s been quiet around here lately.  It’s not an intentional silence or hopefully an overly long one.

I could make the expected excuses about being busy (true), or that I went from unemployed to very employed in a blink (true), or that I’m working intensely on finishing up another project (true).  Which are all true, but not the whole reasons.

One factor is that I actually have a great deal that I feel like I need to write, but most of which I probably can’t publish.  Not now and possibly not ever.  For either personal or other reasons.  But they still feel like important things to say, and to commit to paper, so I’m dedicating some time to doing that.

I halfway considered getting a secret blog for some of it (yes, I use a pseudonym here, but most of my social network knows that this is me, and a very minor amount of research using information I’ve provided would probably tell you who I am), but honestly I’m just not up for the work of maintaining yet another internet identity and ensuring that it remains secret.

I’ve gotten bad at splitting my identity up into pieces.

Not unrelatedly, I’ve found myself irritated with a lot of my own writing.  Simultaneously with how much I feel compelled to over-explain, and how much I feel like I have to leave out.  I’m working on both of those things, with trusting my voice and my words, and saying everything that actually needs saying, with less concern for a potential audience.

The result is writing that I’m happier with, and also less able to publish.

The third thing is that I’ve been feeling a little futile about blogging.  I know that’s not really true.  I know I’ve written valuable things.  A couple of which have been republished and are actually now getting me paid on a semi-regular basis.

But I look at what’s happening politically, and…too many of my posts from four to five years ago are just recyclable.  I look at what’s happening in the world, particularly with regards to police violence and Black Lives Matter, and I just don’t even know what I can say to people who really don’t believe it’s happening.  Or don’t see a problem.  I feel like I’ve been saying a lot of the same things for a long time, and not very much is different.

And maybe that’s self-important, to think that it should be.  But it seems time to go in a slightly different direction, and I’m not entirely sure what that is yet.