January 15, 2023

The counterintuitive queer representation of Sandman

Posted in Uncategorized tagged , , , , , at 11:49 pm by chavisory

I had an initial, and not very charitable, reaction to this review of Neil Gaiman’s Sandman on Netflix from Autostraddle, but ultimately wound up grateful for the ways in which it made me articulate certain things, and found that I had a lot more to say on the topic.

I find it easy, in particular, to be frustrated with statements like “A lot of queer characters die, though I’d argue at least as many straight ones do, too,” because while I don’t even think that simply tallying up the number of certain kinds of characters or what happens to them can’t be a useful and informative element of analysis, I think body counts have sometimes, lately, become used to misinterpret a work. And in the case of Sandman in particular, are unlikely on their own to yield a reliable interpretation of what the work is trying to say.

I agree very much that on the whole, the subject matter of the graphic novels translates well to the screen, and that it’s a welcoming and accessible adaptation even for someone who hasn’t read the comics, and I’m thankful for the writing and casting decisions that helped make that the case. I think it also doesn’t hurt that a lot of Sandman’s newer fans have come of age in a media landscape so deeply and intrinsically shaped by…Sandman. That so much fantasy literature and media of the past 25 years or so has been, in one way or another, emulating Sandman. That Neil Gaiman and Sandman wrote a great deal of the language of fantasy that Millennials have grown up speaking, and so a lot of this story already feels like a native idiom. And yet I do think that newer fans would probably benefit in their appreciation of the show from some deeper context.

Beginning with the fact that Sandman was not a comic deeply beloved by people who felt secure and socially valued by the dominant political and cultural order of the late 1980’s to mid-1990’s.

In the comics, fewer characters are explicitly queer, and more of them are white and male, too. And when I was 15 to 19 or so and first reading Sandman, and Neil Gaiman stories more generally, especially Stardust and Neverwhere, I did not know I was queer. I did not know I was autistic. I did know that things were really not the same for me as they were for my peers, including even the ones who did know they were queer, and that no one wanted to admit that was true.

What I found in Sandman and in Stardust and Neverwhere and later in The Ocean at the End of the Lane wasn’t “queer representation” in anything like the way we talk about it now. It wasn’t about whether a character looked like me, shared my label, or shared my “identity.”

That stuff was just useless as far as identifying characters or stories that actually said anything worth saying to me. To a huge extent, it still is.

It was about people facing things, or finding out they were things, that weren’t supposed to be part of the “real” world. That weren’t, shall we say, admissible into evidence.

Neil Gaiman stories have always been on the side of people who tend to fall through the fabric of the world. Including people who that kind of stuff isn’t supposed to happen to. Farmers’ sons and guys with office jobs. People from nice, normal-looking, middle class families in pretty neighborhoods.

Sandman is a whole lot about acknowledging experiences that the waking world or the human-constructed world doesn’t want or know how to. People who have things happen to them that no one wants to explain or acknowledge.

And this is some of what you see in how grounded the visuals are in World War I and the AIDS crisis. (The show drastically toned down the state that Rachel is in when Morpheus and Constantine find her on the brink of death in “Dream a Little Dream of Me,” for instance.) Because some of the story under the story is about what war does to your body. What AIDS does to your body. How having to be a superhero can turn you into a monster or make you unrecognizable to yourself. How isolation and desperation can.

What humanity is dealing with in both the comics and the show is not just the consequences of lack of access to the Dreaming for a century–it’s war trauma, and the subsequent rise of the military industrial complex, and PTSD, and rampant addiction. When the comics were coming out, WWI was not so much in the immediate rearview mirror anymore, at least for most Americans, but the Vietnam War and the disillusionment it inflicted on people’s view of humanity and what humanity was capable of, very much was. More American Vietnam veterans died of suicide in the decades after the war than died in it. They’d seen and done things that there was no readily available way to cope with.

Seeing more explicitly queer and characters of color in the show feels like an acknowledgement that these are the people these things happened to. These are the victims of the rich and socially privileged playing with power that they do not understand.

Ironically, that means you see more bad things happen to more queer characters, but it’s not rooted in unconcern for bad things happening to queer people. I also don’t think it’s the case that “There just happened to be a lot of queer characters in this show where danger is around every corner.” It’s not coincidental. What you’re seeing is the victimization of queer people, Black people, poor people, strange and vulnerable people who have no words for why, by those who exploit cruelty and injustice for their own profit, brought into the light.

It says that these are not things that ~just happen~ to us because of who we are, but are the result of things people did, decisions that people made, that have deprived us of dreams, of an unlimited sense of possibility of what can be true. Whether proactively, evilly, carelessly, selfishly, occasionally with misplaced good intent, or simply in ignorance of the broader consequences of their actions. As with The Shape of Water, as with Brokeback Mountain and what I feel are the similar misinterpretations that many people have made of those films, the message is not “This is just what happens to you because of who you are. This is all that can ever be true for people like you.” It’s to pay attention to who is doing those things.

The bigots, the authoritarians, and the warmongers.

*

Yes, Sandman was always ahead of its time in terms of representing queer people, and people who defied binaries and boundaries in other ways. A lot of people who loved it then were already identified as queer. A lot of us weren’t. We were just people who fell through the cracks, or who there was no explanation for. And no one would admit what was happening to us.

It isn’t and wasn’t seeing bad things happen to queer people that was affirming, it was someone telling the truth, if even in highly figurative ways, about the fact that it was happening, even if we didn’t understand why it was.

January 3, 2023

Kickstarting “Far Hills!”

Posted in Uncategorized tagged , , at 5:36 pm by chavisory

One night back in 2018 or 2019, Nathan and I spent an evening scouring a building from top to bottom in search of a missing marimba for a concert that was starting in a couple of hours. Not only did we find it in the nick of time, I somehow walked away from the whole ordeal with two spare bottles of post-show reception wine.

Now his group, Faoileán, is fundraising to produce their debut album, Far Hills, written during the pandemic, and I would really, really like to see them make it. People ask me from time to time if there’s anything they can do or contribute financially to me and my work, and while I will never dissuade friends and readers from contributing to the Thinking Person’s Guide to Autism, this is a project that would mean a lot to me to see succeed!

If you are so inclined or love Irish music or supporting independent artists and performers or all of the above, you can contribute here!

December 4, 2022

Autistic lives and legibility in research

Posted in Uncategorized tagged , , , at 1:13 pm by chavisory

Given the current uncertainty regarding the future viability of Twitter, I’ve started screen-capturing some of the threads I wrote there that I would most hate to lose and adapting them into easier-to-share blog posts. Here’s the first!

I volunteered doing social media work for an autistic-led organization for several years, and we would regularly be asked to share surveys or calls for participation in research, and my personal policy was to take every single survey (or ask a fellow moderator to, if I didn’t personally fit any part of the criteria, like being a parent) before sharing it with our community, to ensure that the goals of the research fell within our general values as an organization and not written in a way with a high potential to be offensive or hurtful. There were a lot of researchers trying to look at something worthwhile but whose surveys as written had issues that meant I didn’t feel like I could share them, and many were thankful for that feedback.

I’d say the far greater number of surveys, though, we did share. Efforts by researchers over the years to engage more meaningfully with autistic adults, including by autistic young adults and scholars entering the field who’ve grown up engaged with the neurodiversity and self-advocacy movements, initiatives like PARC and the #AutINSAR/AutIMFAR chats for helping to foster direct contact between interested researchers and the autistic community, and, I think, a growing acceptance that autism is in fact a lifelong condition, meant that over time I saw more studies looking at things like experiences of depression and anxiety, healthcare, employment issues, parenthood, and menopause.

But I would still often find them frustrating to take, for reasons that it took me a long time to articulate or to realize were probably not unique to me.

My aim here is not to rebuke students or researchers who are, in fact, listening to autistic people and looking in the right directions at the kinds of issues that impact our wellbeing and quality of life. In fact, the thread from which I’ve adapted this post was inspired by the fact that I’d recently seen and taken part in a lot of overall good and thoughtful research that had actually allowed me to see more specifically where I was having trouble or what I was finding frustrating in ways that were deeper or more specific than just that I thought the research was bad or poorly designed or entirely on the wrong track in its aims.

So here are some things I would like to tell autism researchers in general about surveys.

1. I am so tired of having to retake the AQ screening (or EQ, or both) as the entire first part of your survey.

It’s sexist, it was designed to affirm outdated stereotypes, its assumptions have been countered by newer and better research, it is long and easy to game. And because it was designed in the first place to confirm certain sets of beliefs about autistic people, it risks leading you to circular conclusions.

And frankly, I’ve already been diagnosed with autism, and it can feel like having that called into question again, and again, and again.

I very much understand the need for validation that study participants are autistic. But the AQ is such a flawed and onerous tool that unless what is under study is some aspect of the AQ test itself, I would really like to see its use as a gatekeeping device rethought.

2. So many problems could be solved by allowing multiple answers or “check all that apply” boxes on questions about self-identification.

There are categories for which I can choose a best-fit answer, and there are ones for which I cannot.

3. Relatedly, if you’re studying gender variance or gender non-conformity in autistic people, it must be possible to identify as GNC or genderqueer but not transgender.

I know that it’s become common and accepted to see the transgender umbrella as encompassing the whole range of gender experiences other than that of being uncomplicatedly cisgender. But some people do experience themselves as gender non-conforming, genderqueer, or genderfluid but not trans.

If you’re truly only looking to study experiences of trans autistic people, that’s an important and necessary area of inquiry.

But if you say you’re studying autistic gender non-conforming people but you’re really only asking about trans experiences, or you’re classifying any experience of gender variance as transgender experience, you’re going to risk missing nuance or outright misclassifying a certain number of people’s experiences.

According to common, present definitions of what it means to be cisgender vs. transgender, for instance, I literally cannot call myself either without lying in about three different ways. I’m not trans, but to call myself cis currently requires me to agree with things that either didn’t happen or that have nothing to do with my relationship to my body.

But I’m also not a woman in the same ways that, for instance, most straight, non-autistic women are. And I’ve had to back out of surveys when it became clear that they were going to classify my experiences as trans whether I actually did or not.

4. Questions about employment status need to allow for some truly, wildly, unconventional and fluid situations.

For instance, I spend some of my work life under union contracts, but not all. While a freelancer in some regards, I am mostly not actually self-employed. I have an average of six different employers per year, some of which are the same from year to year, but some of which are not.

In any given month, I probably have income from two to three different sources.

Whether I’m employed part-time or full-time, self-employed, or unemployed can change on a week-to-week or month-to-month basis. I have weeks when I work sixty hours and weeks when I work fifteen hours.

It’s very worth knowing what overhire and contingent work is. This is the kind of instability that many of us who do this kind of work—including a lot of arts workers—deal with. And I have reasons to believe that autistic people may be significantly over-represented in arts-related fields as well as other kinds of unstable and seasonal work.

(In all of your defense, let me just say that these are things I still have trouble getting people like federal judges to understand every single time I get called up for jury duty. What it means that I have multiple jobs, none of which ever have the same schedule from one week to the next, unless I’m on an AEA contract for a full production, and then that’s all I do for ten to twelve weeks. That I do not have a salaried job, or even an average weekly number of hours with a single employer who becomes obligated to keep paying me if I get called away for three to four weeks. That I can’t afford to just not work for that long. I had a long, frustrating interaction with a jury pool administrator once who kept telling me “But if you weren’t here, you’d be at work. So where would you be?” and I kept trying to explain “Yes, but I don’t know where, because I had to mark myself unavailable everywhere in order to even be here today.” There was no answer to that question she could understand.

My experiences with the court system as a potential juror actually played no small part in convincing me I probably needed to be assessed for autism.)

I think there’s also a higher likelihood of autistic people being engaged in under-the-table work, caretaking, or other informal or flexible work arrangements that may be hard to shoehorn into the way most survey questions on the topic are written, than tends to be accounted for. I think there’s a tendency to see autistic people, if we’re employed, as either being employed through some kind of placement or training program; or in mainstream, conventional employment with or without formal supports, and I suspect this may fail to account for the realities of people who are cobbling together a living in far more unconventional and marginal ways.

On so many questions about employment status, I have been just barely able to tell the truth, because none of the options presented truly describe my situation. Like, even “full time or part time” is a false dichotomy. And I’m not even in an especially strange situation. Lots of people, both autistic/disabled and not, have work lives like mine, which are just invisible to most people outside our specific communities. I suspect the fact that autistic people often have incredibly niche strengths may play into this as well.

And issues of employment instability lead me neatly to…

5. Healthcare and health insurance

Before the pandemic, I had never been insured for more than 18 consecutive months, at any point in my adult life.

While I technically had the same insurance for most of the years between, say, 2012-2020, I was in constant danger of losing eligibility for it every six to twelve months, depending on the number of weeks I’d worked on certain union contracts over the previous year.

(Yes, that’s as much of a blast as it sounds like it’d be. The cost-saving measures implemented by our health and pension fund since the onset of the pandemic have made it even worse—harder to earn eligibility to buy insurance, more expensive for lower-quality coverage, and harder to keep it.)

And I was taking a survey on disability and health care a few years ago that didn’t have an easy way of articulating that situation, but it’s one that, again, is very common to people in my field.

I paid penalties under the ACA most years until the individual mandate was struck down, because it was uncommon for me to be insured the entirety of a calendar year. (One year I didn’t, because while I’d been uninsured twice in the course of the year, it was for less than three months both times.)

Since the outbreak of the pandemic in 2020, I have managed to remain continuously insured through a patchwork of short-term bridge plans, relief programs, COBRA subsidies, and the intensive assistance of an experienced and dedicated ACA navigator, but I have therefore been on five different insurance plans since the fall of 2020.

You can’t really call that acceptable continuity of care.

6. So many of the things I need support with are less about needing autism-specific or even disability-specific services, and more about the fact that the world assumes to an outrageous degree that people over a certain age have a spouse or romantic partner.

And if you don’t, people don’t really know how to help or what to tell you.

I encountered this in the worst way while attempting to get exceedingly minor surgery. The surgery itself could be done under local anesthesia, only…they wanted to sedate me as well. And that would require that I have somebody to accompany me home.

If you don’t have a partner, if you don’t have family in the same city, if you have friends who would absolutely be willing to do this but have caregiving responsibilities themselves (or live in a different city), if your longtime roommate is out of town, if you don’t feel like you can ask a local friend to take a day off work which will entail them giving up income (see above) or possibly even finding and paying their own replacement only to feel jerked around when your surgery date gets rescheduled three times…who is that? Who is assumed to have some kind of obligation to be there for you?

Are single adults just not supposed to need certain kinds of healthcare?

I did have the surgery, without sedation, so that I’d be allowed to leave and go home by myself. Having to fight for this was hands down the worst part of the entire process. Not being awake for the actual surgery—that was kind of interesting. Not the pain, for which I took Advil, not the recovery process, not having limited use of my dominant hand, although that definitely also presents certain difficulties when you’re on your own. But having to try to make someone understand, over, and over, and over again, that there would be no one coming to get me, and so they needed to work with that.

The obligations of keeping a life together fall extra hard on me, not only because I have limitations other people don’t, but because I don’t have many of the same kinds of relationships and support structures that most people just tacitly have, and are widely assumed to have.

And in no way do I mean this to suggest that no one really needs individually-tailored services or that inadequate supports for people who need them in order to live in the community aren’t a problem; they are. This is just an example of how I think it’s assumed that inadequate support provision looks a certain way—and sometimes it does—but sometimes it looks a way that is much more complicated to check a box about.

(And I think there’s a lot more worth writing, and that has been written, about the particular burdens of bureaucratic fuckery on the lives of autistic and disabled people already getting by with insufficient support.)

This is not intended to be an exclusive or exhaustive list, but I hope it might be a useful and thought-provoking one. Again, I’m not aiming to be too harsh on researchers for just not knowing what they haven’t had any way of knowing, and I think one culprit is that we still just don’t know that much about what older and unidentified autistic people’s lives look like on the ground, outside of school/clinical/institutional contexts. For a lot of reasons that I’ve glanced off of before but that get hard to delve into in a post of this length. But I think we have a tendency to fall through a lot of categorical cracks, and I like to think there are ways our lives could start to be less illegible. Because I think we suffer a lot for that illegibility.

December 1, 2022

Iron Horse Park

Posted in Uncategorized tagged , , , at 1:53 pm by chavisory

I go wandering through Iron Horse Park in Tucson on a brief diversion from another errand, and it is simply one of the most liminal spaces I have ever encountered. It’s not a pretty park (indeed, it seems to be scheduled for a significant upgrade and redesign), but I think it’s weirdly beautiful.

It contains probably my new favorite piece of public art, about which I can find virtually no information whatsoever online. On maps it tends to be identified either simply as “public art” or “existing artwork.”

I honestly don’t know what to call this other than…it feels like some kind of a tiny sanctuary.

I am dying to know what happened here but the internet’s not giving me anything.

A small plaque on a rusted metal piece of sculptural artwork reads “This plaque honors the deeds of Jo-nathan, CBike, Jass-Hammer and Bripod, when on August 29th, 2011, four men drank Four Loko, fought crime, and still made happy minute.
Thank you for your service.

On another plaque I encounter the work of poet Genevieve Taggard for the first time.

Train: Abstraction

The steely train in the stupid green
Of sleepy, sleepy summer tore
An even rent in the placid clean
Cloth of the air with an onward roar.

Above the sharp diagonal, -the two
Lines either side the rended cleft—
The air closed in, the green stuff grew
Almost together—until the train tore left.

I saw this happen daily and watched both:
Saw the air mend, and the round earth pinch the crack-
After the train sprung them both open with an oath,
A massive pressure. Until the train came back:

Dark spot of these rails—lines laid merely for speed-
Dark clot of speed on pure line, to assert:
Idea the line; the dark acceleration, the deed,
Passing along the line to kill the inert.

-Genevieve Taggard (1894-1948)

Her writing reminds me just a little bit of Ray Bradbury or Ogden Nash. Sadly, most of her books are out of print, but I found a link to a free download of one here.

November 26, 2022

On being a friend to autistic people

Posted in Uncategorized tagged , , , at 2:20 am by chavisory

In case you missed it, I recently contributed to “How Non-Autistics Can Be Good Friends to Autistic People” from the Thinking Person’s Guide to Autism, along with three other autistic adults and advocates, about what non-autistic people might need to know in order to be good friends to the autistic people in their lives.

You can read the post here!

November 21, 2022

The Lincolnshire Poacher

Posted in Uncategorized tagged , at 7:57 pm by chavisory

for M. Kelter

I stalk a ghost through the internet now.

A post of yours I had bookmarked in my “best goddamn writing about autism” folder, but which, off of the top of my head, I can remember nothing whatsoever of the content or subject matter anymore. The entire contents of your blog, thankfully, made it into the Wayback Machine, but not, for some reason, that one entry. (And I find it darkly funny that an otherwise entirely searchable index page for your blog now appears titled “404—Page Not Found.”)

I should’ve asked you for a copy of it sooner. I think you took this one post down before the rest of the blog. I’d noticed the broken link before but wanted to respect your decision if you’d taken it down deliberately for some reason, and now here I am hoping against hope that someone else didn’t and either saved or reposted it without your permission.

A cursory Google search doesn’t give me any lead on the document itself, but still illuminates, tangentially, something of its spirit, of its substance. Like a planet or a particle that can’t be observed directly, but becomes detectable by its effects on the space or bend of light around it. The pull it exerts on the orbits of other nearby planets.

It’s like the inverse of that. I can’t see the thing itself anymore, but I can guess at some of the matter it revolved around.

A numbers station. A folk song of hunting. A band in England.

Mysterious, opaque, or maybe purposeless communication.

October 27, 2022

Postcards from Arizona

Posted in Uncategorized tagged , , , at 11:46 am by chavisory

Tucson is lovely in a way I didn’t know how to expect. It’s greener than I thought it would be. It feels a little bit stuck in time, in a different way than parts of upstate New York do. Part of it is the weather, and part of it is the quiet, and part of it is almost literally being in a time zone unto ourselves (since Arizona doesn’t observe Daylight Savings, it’s part of the Mountain Time Zone for part of the year, and part of the Pacific for the other part).

One of the strangest things is how early it gets very dark. The clouds are astonishing every single night.

New Yorkers kept talking about this place as if it were a Republican hotbed, but there are Support Ukraine and Climate Action Now! yard signs everywhere.

Trains, both freight and Amtrak, run close by my loft all night and it reminds me of a friend’s place back in Athens. Radio towers remind me uncannily of the ones in the Selenetic Age in Myst, where I’m still stuck in a game I haven’t played since February.

There are a lot of tattoo studios, a lot of ice cream parlors, and a lot of feral cats. A fluffy black one seems to be the night patrol of our block, and a green-eyed tabby crosses my patio wall in the mornings. There are wind chimes somewhere I can hear but can’t see. There’s a bird with a strange, complaining call who’s always too fast for me to glimpse.

The grasshoppers are enormous.

Browsing in a local head shop, I find the “I Want to Believe” poster in their stacks. The Moody Blues’ “Nights in White Satin” comes up on the shop playlist, and I want to tell my 14-year-old self things she wouldn’t understand or believe.

It’s a beautiful fall day, and you’re in a hippie shop in Arizona. The Moody Blues are playing and people still love the X-Files. You’re 40 and you’re here for work because you have a career in theater. Also you just survived your first global pandemic. There’s a café that will make you an Irish coffee. Everyone here has tattoos, and so do you. There’s a bar that doesn’t treat you like you’re strange if you go there to watch baseball and write letters.

A plaque says Jascha Heifetz played at the dedication of the theater here. The church downtown has a mosaic of the lyrics to my favorite hymn, and the bookstore carries my preferred brands of planner and notebooks, which is good because I should’ve but I didn’t bring a spare one.

Hallelujah.

A young man approaches me on the sidewalk one night. He sounds German or maybe Dutch and he’s asking me where the Old something-or-other is, and at first I say “Sorry, I just got here, I don’t know anything!” before I realize exactly which establishment he’s looking for, and luckily, it’s one of the three or so things I do know.

October 1, 2022

The meadow

Posted in Uncategorized tagged , , at 8:17 pm by chavisory

The last few years I’ve been going home to the Midwest more often in the summertime, as various factors have made it the easier time to have large family gatherings, and the pandemic has made it the safer time, too. But almost never is it the case that I see anything that makes me happier about new development in the area where I grew up. There’s always a new subdivision of identical-looking houses in yards without trees. Another cheap-looking strip mall of chain restaurants and mobile phone stores on former grassland or woodland. Almost all of the woods along Highway 9 into Parkville are strip mall now. A local shopping development turned a patch of grassland into parking decks and chain stores and restaurants, and the pandemic subsequently turned most of it into a ghost town.

My old school district, last I checked, was planning to put a new elementary and high school complex on the site of some of the very last original forest in the city.

But this year when I was back for the 4th of July, as we turned off the highway on the way home from the airport, a corner plot of land that had been a usually-fallow soybean field for as long as I could remember, and then untended scrub that I was increasingly afraid was about to become another barren housing development any minute, was, somehow, forest. Extremely young forest, probably not more than four or six acres, but forest. It was a variety of shock I’ve never experienced before in my life. Somehow the opposite both of turning a corner to see a building where there wasn’t one before, and of turning to find a patch of sky where last you checked there was a building. For a second I was so disoriented I doubted where we were, even though I’ve driven that way probably hundreds of days of my life.

A friend said that apparently there’d been an agreement made to leave the plot undeveloped as flood control. Another roadside plot a little ways down is now a monarch butterfly preserve full of wildflowers and milkweed, and a sparse patch of woods across the street is protected watershed.

I’ve seen buildings both appear and disappear seemingly in the blink of an eye. I’ve come back to the city from summer stock to find apartment buildings where there had been a parking deck or a vacant lot. I’ve seen buildings demolished and natural habitats destroyed for buildings, and buildings long since decayed and abandoned and the land they occupied gone feral. I know of places this has been allowed to happen, though mostly long before I was born, like North Brother Island or Doodletown. Earlier this year as I returned home from a hike via a subway station I hadn’t used much in recent months, I emerged onto the sidewalk to a patch of sky I’d never seen before in my life where an older building had been demolished to make way for a new mixed-use development. The new building rose and eventually blotted out the sky again, but for a few weeks, a patch of sky existed that hadn’t been seen for decades.

I’d never seen a piece of land restored to something approaching wildness within such a shockingly small amount of time.

And I didn’t think I was going to see such a thing twice in one summer, either, but back in NYC, I was out walking in Central Park one night and took a turn up a trail I don’t follow much because it only led to a scraggly hillside along the road dividing the Ravine and North Woods from the ballfields. But I did, and rounded a corner to find a landscape I’d never seen before.

Signs on nearby fences said that the Central Park Conservancy was restoring a plot of native meadow.

There were plants I’d never seen before, insect sounds I’d never heard before, a kind of light I’d never seen, about half a mile from the apartment where I’ve lived for 18 years. Clouds of chimney swifts darted across the sky above.

As I stood and just looked at it, I watched probably half a dozen people stop and do the same. I like the idea that for people who are kids now, this is just the way it will have always been.

[Three photos of an urban meadow with tall grasses and purple and yellow wildflowers under a deep blue sky]

September 13, 2022

My letter to my Senators regarding #StopTheShock

Posted in Uncategorized tagged , , , , at 10:45 pm by chavisory

As many of you probably know, the autistic community has been working for many years to oppose the use of an electrical shock device, known as the GED, employed as punishment and behavioral control at the Judge Rotenberg Center, a residential facility for autistic and intellectually/developmentally disabled people.

(It should be noted that the type of electric shock employed at the JRC is not ETC, or electroconvulsive therapy, which has an immensely troubled past but also legitimate and ethical uses, notably for treatment-resistant major depression.)

While the FDA banned the use of the GED device in 2020, the ban was later overturned on appeal. The autistic community is now advocating to #StopTheShock by asking the Senate to pass the Food and Drug Administration Safety and Landmark Advancements Act of 2022, including language as passed by the House of Representatives that would once again ban use these devices on autistic and intellectually disabled students. Below is my letter to my Senators on this issue.

***

Dear Senator Gillibrand/Schumer,

I am an autistic New Yorker, and I’m writing to ask you to vote to pass the FDASLA Act, including the language banning the use of electric skin shocks as behavior modification, as the House has already done. This is a practice the U.N. has found to constitute torture, and I think it is shameful that this kind of mistreatment is still being practiced on autistic and disabled students in this country. There are far more effective and ethical ways of helping autistic people with the most intensive needs.

Thank you so much for your time.

Sincerely,

{My Name}

July 21, 2022

The strange loneliness of liking too much

Posted in Uncategorized tagged , , , , , , , , , , , , , , , at 4:53 pm by chavisory

A Facebook memory from about four years ago popped up in my timeline recently; I’d been looking for someone, anyone, else to talk to who’d been listening to both the Rabbits and Point Mystic podcasts. Rabbits was another podcast by the creators of TANIS, a mystery involving a missing woman and something that might be an elaborate role-playing game or might be something much darker or might be all in the imagination of the narrator. Point Mystic in its early days was kind of like if Ray Bradbury and Neil Gaiman had teamed up to write a family-friendly horror podcast for old Millennials (and if that sounds like something you’d be into, well, I highly recommend it).

Two friends had heard Rabbits. None had heard Point Mystic, and so obviously none had heard both, and I was just helplessly desperate to find someone to talk about common themes and symbols between them with, and I was completely out of luck.

To the best of my knowledge, I still am.

Or I saw a slightly older horror movie a few years ago called YellowBrickRoad, and wanted someone to talk to about its parallels to both LOST and Limetown, and there was just…no one. Or no one interested enough, anyway. Even though Limetown had been hugely popular at the time, and the movie had come out the same year LOST had ended, it was an indie release that just not enough people had seen, I guess. Or they did, but no one saw what I saw.

Lately I’m really into the relationship between ghosts and time travel, and that’s a hard one, even though it seems like it shouldn’t be. I was reading a book called Ghostly Matters by Avery F. Gordon last summer and I’d love to see someone discuss Twin Peaks in light of that work, and it seems so obvious to me, like they were written for each other, but no one really has, as far as I can tell.

I was also stewing about this in relation to question about what the things are that you feel are chronically under-appreciated. And the problem for me isn’t quite that, although those things do exist for me, being autistic and all. I do have a lot of favorite media that not very many people are familiar with, but the people who are love it a lot, even if they’re few and far between.

But the thing that really gets me, that leaves me feeling alone in what I love so often, is seeing relationships and parallels between my niche interests—or sometimes even between things that aren’t really niche phenomena but that just don’t tend to share a common audience—and the combination of uncommon interests and uncommon pattern recognition is what will really leave you without anyone to talk to, going “I can’t be the only person who’s seeing this, right?”

Take for instance Amazon’s Outer Range, which, with its initial appearance of being more of a Western family drama, seems somehow to have captured an audience that overwhelmingly doesn’t watch any other fairly popular television sci-fi. Reviews mentioned superficial resemblances to Stranger Things occasionally, but there should’ve been people yelling about the ways it was invoking tropes from the X-Files, Fringe, and Doctor Who.

And I half suspect that the rise of binge watching (and the production of much shorter seasons more suited to binge watching) might actually be accelerating the phenomenon. (A recent Tumblr post confirms that at least I’m not the only person perceiving this to be the case.) Where even shows that become massive smash hits are a flash in the pan as far as how long they really stick in the popular consciousness, as opposed to building a presence in the public awareness over time, so that a story’s language becomes our language. Instead, a show that’s a year or two old, let alone five or seven, seems to just have no grip on public memory anymore. And things don’t build followings by word of mouth over time, so that there are fans in various different stages of engagement. Everybody saw something when it came out a year ago, and now nobody has any sense of its connection or relationship to anything else.

I think there’s an aspect of age to it, too. When I was a teenager, you couldn’t really be too sincerely enthusiastic about much. Now you can, a whole lot more, but younger people watching the same things as you just don’t have the same background knowledge. So I watched the first season of Good Omens a couple of years ago, just constantly going “So we’re really not going to talk about the whole dialogue with the Screwtape Letters happening here? We’re really not going to talk about that at all?”

Anyone?

Bueller?

And I feel like there’s an inclination lately to ask whether an experience like this is ~an autism thing~ but I hesitate about that, because I don’t think it’s something just intrinsic to that or something other people aren’t capable of experiencing. Although I think it’s probably more likely to be a corollary of having a fairly broad range of somewhat niche interests, a stronger than average attention to detail, and a much longer than average memory.

There’s a loneliness to having too narrow a range of interests, to being in love with something that nobody else is, or that’s very displaced in time compared to the rest of your social circle (being obsessively in love with the music of Buddy Holly when you’re eight, or the Moody Blues when you’re 13 will not get you any conversation partners). There’s another kind, ironically, in having too broad a range of enthusiasms.

I want to talk about Radical Face’s “Family Tree” album cycle and Ray Bradbury and “The Nevers.” And Ray Bradbury and Tales from the Loop. And even though JK Rowling is totally canceled, I want to talk about all the X-Files easter eggs in Harry Potter. I want to read about time travel and trauma, about time and memory and the precise relationship between the Austin and Murry O’Keefe families. Sometimes I go searching fanfic archives, sometimes academia.edu or JSTOR for the kind of meta-discussion I want to be reading, though rarely to much satisfaction. Lately I really want to talk to somebody about Josh Ritter’s The Great Glorious Goddamn of It All and also Willa Cather’s My Ántonia.

I know entirely too well that what a lot of people would say is “Well, you could write about all of that!” That you have to write the things you want to exist in the world if no one else is going to do it. I am borderline afraid that this is what finally drives me into grad school, just for the opportunity to pick a topic no one else is ever going to and spend several years writing 200 pages about it.

But I could spend the rest of my life writing essays about this stuff just to placate my own restless brain, and it’s still not the same as getting interpretive feedback with people who can also see what you see. As getting to have a conversation.

“Is this something no one else has noticed and that’s why no one is talking about it?” I spend a lot of time wondering. “Or is it actually so obvious it doesn’t bear mentioning?”

In most cases, it’s a question I never get an answer to.

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