January 27, 2024
“Loss of self,” and lacking the experiences of other women
I’ve been looking around lately for decent books about the experience of giftedness or twice exceptionality in adulthood (though mostly coming up short), and one that I came across was Reclaiming the Lives of Gifted Girls and Women by Joan Franklin Smutny.
The book draws so heavily on the 1992 AAUW report “How Schools Shortchange Girls” and also on the work of Carol Gilligan that I was surprised in a way the author didn’t cite Mary Pipher as well, and though she doesn’t, I found myself almost immediately not identifying with what it describes—the focus on the loss of self of middle school-aged and adolescent girls. That they crumple under the sexist expectations of parents, teachers, and broader society, and lose their self-concept, lose their beliefs in their own abilities, give up on their own ambitions, slowly give their lives away to the approval and expectations of others.
That thesis wasn’t the only thing, but it was one of the big things that made reading Reviving Ophelia feel like reading about an alien species when I was a teenager.
It’s not that I didn’t feel the dissatisfaction of adults and society, but I felt like I never let go of my authentic “self” in that way for the love or approval of others, in part because I knew I couldn’t do what they wanted, anyway.
I could not be the girl they wanted. I couldn’t even pretend.
I could see, on and off in various ways since I was extremely young, that a whole lot of the various paths that other people saw for me just weren’t going to work.
Invisible disability gave me something that I knew. That I knew and they didn’t, that meant I knew more about my life and myself than they did. And I knew it, even though I didn’t have those words for it.
Looking back, it was protective in a way, though it did not feel like it at the time, that a certain level of caretaking responsibility or prioritizing the feelings or needs of others was something I couldn’t take on or sacrifice myself for because I was not capable of it.
And there’s a huge, huge parallel with how many autistic women now tell a story of not knowing who they really are, or of not having a core self, because of intensive masking from an early age, or because they learned to adopt the personality or mannerisms or the likes and dislikes of peers or whoever would take them under their wing, and I just could never do that. And I’m cut off from a lot of the dominant narrative about autistic women because of it.
And I’m very wary of portraying this experience as more virtuous or more honest or playing “more disabled than thou” about it, but it is exasperating, when this is so often understood as why things are the way they are for autistic girls and women, and it just has nothing to do with me.
It’s interesting to me that while, in many ways, I think disabled and twice-exceptional people are probably having experiences that the existing literature about giftedness doesn’t account for very well at all, but this is something I see in writing about both giftedness and autism/disability… but don’t relate to at all from either direction.
I want to know more about the way things have been for the other autistic and gifted people who couldn’t pretend or couldn’t mask in the ways that term has come to signify.
In a way, I wonder if we have better lives, if we’re more self-knowing, more secure in our abilities, more adept at self-accommodation, more likely to have found a niche professionally, because when it’s very clear what you’re not capable of, it’s easier in a way to decide to expend your resources on what you are.
I also wonder if we’re more likely to be lonely, less likely to have a certain kind of support network or friend group, because we both can’t and won’t sink energy into superficial relationships or pretending to be something we’re not just to have them, because we have to be so extremely wary of wearing ourselves thin, because we can’t adopt or maintain the persona that so many other women seem to look for in friends…and because we may not be capable of performing the kinds of caretaking (emotional or physical) that solidify family and other kinds of close relationships.
I desperately want to see someone else talk about what the costs of that are.
January 23, 2024
All in a Row: the puppet problem
In light of continuing concern over the future stability of Twitter, I’ve been working on adapting some of my threads there into easier to archive and share format here. This post is adapted and expanded from a thread I wrote in 2019 in response to the play All in a Row.
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In 2019, a play called All In a Row was produced by Southwark Playhouse in London. In the play, married couple Tamora and Martin grapple with challenges within their marriage as they prepare to send their nonverbal autistic son, Laurence, to a residential facility after they learn a report has been made to social services.
The autistic child character, Laurence, was the only character in the play portrayed by a puppet. The rest were played by live actors.
In the ensuing controversy and backlash from the autistic community, the production’s now-deleted Twitter feed posted the following:
As it happens, I wrote one of my honors capstone papers in college on East Asian ritual puppetry traditions and their relationship with continued social marginalization of puppet theater practitioners even in the present day. While it hasn’t been my professional focus, puppetry is something I’ve maintained a peripheral interest in. And I don’t believe Southwark’s response adequately or accurately addressed self-advocates’ objections to this portrayal, or what the core issues with this character actually were.
Because it’s not, in fact, automatically jarring or off-putting to me to see an autistic character portrayed by a puppet. I need to know more about the context and concept of the production to know how I feel about it.
By now it is well-known, for instance, that Sesame Street has an autistic character who’s a puppet (rather, a Muppet). And while her introduction wasn’t greeted with universal acclaim in the autistic community, her reception has been generally positive, and relatively little of the criticism leveled at her portrayal is based purely on the fact that she’s a puppet. Because in the rules of the world of Sesame Street, with which a large proportion of the U.S. television-watching population is at least glancingly familiar, both humans and Muppets are considered possessed of full personhood. (Indeed, there’s a long tradition of journalists and interviewers treating the Muppets as if they’re as “real” as any other human performer.) Both human and Muppet residents of Sesame Street participate in learning to understand and appreciate their neighbors’ differences. Many forms and styles of communication are respected. No character is considered fundamentally unknowable, or treated as non-sentient, based on their puppet-hood.
And so it’s not a coincidence that many autistic people adore Julia (who additionally was developed in consultation with the Autistic Self Advocacy Network and real-life autistic people). Not all do, but many. She’s a whole person, and not just a portrayal of deficit, in the context of that world.
One of the things that puppetry can do is enable empathy rather than undermine it, allowing the audience to confront intense or difficult emotions it can be too difficult under normal circumstances to allow ourselves to experience with regard to other actual human bodies. In the 2015 Off-Broadway production of The Woodsman, which chronicles the transformation of Nick Chopper into the Tin Woodsman we know from the Wizard of Oz stories and movie, for example, something is accomplished by having the audience see the title character’s body progressively replaced by puppeted mechanical limbs, and finally, entirely, by a near life-sized puppet Tin Man, that could not be by the simple addition of costume pieces or prosthetics.
That same year, I myself worked on a project in which only one character was a puppet. Other characters were played by human actors, but as the story progressed, you realized they might be fictional, or they might be part of a video game. Or they might be imaginary friends or fantasy creations of another character in the play. They might all be totally real people within one huge interlocking, reverberating set of stories, and it might be that multiple worlds are bleeding into each other, allowing characters from different timelines or levels of the story to wander between them. The possibility existed that the Boy, a rough wooden puppet who never spoke, might be as “real,” as human, as any of the others, or none of them.
And so you had to invest in all of them. You had to empathize on some level and buy into the stakes of all of them, because any one perspective on which characters or which aspects of the story were “real” might not be reliable. No one within the story had the whole truth.
(How’s that for a demonstration of theory of mind? But I digress…)
And as rehearsals wound into tech and performances, cast members seemingly instinctively came to treat the puppet Boy with a great deal of tenderness. People took turns holding him like a child. He was sat up in a house seat for notes sessions, and handled far more respectfully than other props.
So no, just the idea of an autistic character being portrayed by a puppet isn’t necessarily jarring or upsetting to me. It’s the portrayal of an autistic character as a puppet in the context of the whole, entire rest of the marketing imagery and synopsis given about this play.
I’ve seen puppetry used to some remarkably creative, humanizing, thought-provoking effects, but nothing I ever saw of the information made available to the public, in this case, gave me high hopes.
It’s that this production takes place in a cultural context in which most people are very accustomed to thinking of autistic people as somewhat less than fully human or fully sentient. The way this subject matter is handled would need to be massively subversive in order to have the autistic character, alone, be a non-human and yet succeed in undermining rather than reinforcing that incredibly pervasive preconception.
And that would not be impossible. But I saw no indication whatsoever in this case that it was true.
It’s the playwright’s remark that the autistic child character is “so individual” that it would be wrong to ask someone else to play him. Which makes me suspect either that he does not know what makes the character unique…so I’m uninterested. Or that every other character onstage is so formulaic…that I’m uninterested. If what you’re telling me about your play is that none of your characters are distinctive individuals who I might care about, learn something about, or identify with in a way I didn’t expect—then to be honest, I’d rather stay home and read a book.
It’s the marketing image of four little candies with the blue one alone tipped over wrong, literally out of line, which, frankly, is what most people already think they know about autism and autistic people. It’s both telling me that the play doesn’t set out to challenge that at all, and also belongs to a whole class of imagery about autism that autistic people have been combating for over two decades at this point as both dehumanizing and a fundamental misrepresentation of the reality of the condition.
And I’m bored of it.
Like way more than being hurt or offended by it, I’m just bored. Again—I’m being told not to expect any new perspective, from this play, on what I already know people believe about people like me.
“Like any couple, Tamora and Martin have big hopes and dreams. But when your child is autistic, nonverbal, and occasionally violent, ambitions can quickly become a pipe dream.” This isn’t only other stories that have been told before, it’s what most people already think they know about certain kinds of autistic kids, and it’s those kids who are most vulnerable to dehumanization: who can’t easily make themselves understood, who are subjected to rampant invasions of their bodily autonomy, and whose reactions of frustration are so often characterized as reasonlessly violent.
So when a production implies that they’re showing an audience something they don’t know about life with an autistic kid, but really is just reinforcing what they think they already do know, and it’s this—that violent, nonverbal autistic kids upend their families lives—and that the minds and experiences of kids like this are so opaque, so unknowable, that they might as well be replaced by a puppet onstage rather than give a human actor the responsibility of developing any insight or identification with them—that stands a very high chance of entrenching the victimization and dehumanization of those kids, rather than challenging it.
And maybe I’m wrong. Maybe something about the writing or direction of this play is so subversive that it manages to convey the opposite of that message. I can accept that possibility (and on some level I have to, as I can’t readily just fly to the UK to see for myself).
But pattern recognition from a long time in advocacy and even longer in the performing arts says probably not.
That’s my concern. It’s not just the puppet, in and of itself. It’s the nonverbal autistic kid alone as a puppet, in all of that context.
The creative and marketing teams of this show have treated the autistic self-advocate community as if we just don’t know enough to be alarmed and pessimistic about this production—when the reality is that we are operating with a degree of context it seems they are not.
January 20, 2024
The shot that didn’t win
Back in November I entered WNYC’s 2023 “best photo sitting on your phone” contest with this picture of flowers for sale outside a local grocery store as I was out doing errands one afternoon. It didn’t get picked, but I’m very proud of it.
The winning entries and honorable mentions are all here. I think my favorite is the one of Mary Oliver’s typewriter. I used to keep that exact same offcut from a sheet of stamps with the word COURAGE on a notebook of mine.
Anyway, I took this one with an iPhone 12 mini, and it’s completely unfiltered!
January 10, 2024
Coffee shop in a train!
For as long as I can remember, and almost certainly much longer, a pair of decommissioned train cars–a red caboose and a longer yellow passenger car–have stood at the railroad crossing in the town near where my parents still live. For a time when I was a kid, they were home to a Mexican restaurant, which failed within a few years, and the train cars stood empty for most of the next three decades.
On a recent trip back, I saw that someone had finally put a coffee shop in them, but over Christmas I finally got to go in and have coffee, and it’s delightful.
January 6, 2024
A train of thought on autism, inertia, and addiction
This past summer I did my first ever gig as an autism consultant for a new musical in its early stages of development, and had written down something our director said:
“Alcoholism comes in a lot of different shapes, just like autism, as we’re finding out.”
And it made me wonder, belatedly, whether the addiction/recovery communities suffer from some of the same “myth of the single story” issues that the autism/autistic communities do, and some of the same kinds of resentments among people or between factions around what the dominant story is, or pressure to tell a particular story about the experience.
For instance, are people trying to tell slightly more nuanced stories than the traditional ones accused of being in denial or trying to erase challenges in similar ways? (When I read this op-ed after the death of Matthew Perry this fall, I suspected even more that this might be the case.)
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Something else that’s been turning over in my brain since I read it a few weeks ago is this study on autistic adults’ experiences of inertia, which I just so happened to read in the same week as I listened to this RadioLab episode on how to make your life feel longer (tl;dr: by giving yourself more experiences of novelty, which forces your brain to slow down and encode more information than when you’re having basically the same experiences day after day). And it got me to wondering about the possible relationship between inertia and autistic experiences of time and memory in a new way.
It’s long been anecdotally reported, for instance, and studied a little bit, that autistic people tend to have longer memories, and more detailed early memories, than non-autistic people do on average, and I’d wondered before whether cognitive inertia might be involved–whether we have more trouble, literally, “moving on” or cognitively moving through time than non-autistic people do…or whether it was simply that we pick up on so much more detail than most kids in our early years.
But this made me wonder whether, if the predictive coding hypothesis of autistic inertia is at least partly right (and I think it’s likely that it is), then is it the fact that our brains are noting more unpredictability/variability, that we encode more occurrences as novel, that may underlie both inertia and long/highly-detailed early memory?
And is it even possible that our tendency towards ritualization and routine is an adaptation towards countering inertia? If novelty, disruption, and prediction errors are part of what makes us “stick,” do predictability and ritual help us move?
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And further…is there a possible relationship specifically between autistic inertia and experiences of addiction?
We know that addiction is a huge and understudied problem in the autistic community. To the extent that I do see it discussed, it seems to mostly be considered in terms of social risk factors in tendency towards addiction (loneliness, depression, use of alcohol especially as a social lubricant), or as self-medication for anxiety or sensory overload.
“But can someone put it down and choose to walk away?” I asked in a conversation I was having over the holidays about screen addiction vs. people who just actively enjoy video games and voluntarily devote a lot of time and attention to them. Which, my father affirmed, is a pretty good encapsulation of what distinguishes an addiction. Can you choose to stop, put it down, go do something else?
And if it is both the case that a substance is biochemically compelling, and that we have trouble with stopping and changing activities–with putting something down and choosing to do something else–for independent reasons, what is the interplay between those factors and how they may reinforce each other?
Could it be the case that substances that involve some kind of a tactile or ritual component, like drinking or smoking, are particularly compelling to autistic people, and would it be possible to study how much of a contributing factor to maintaining an addiction inertia is to autistic people compared to non-autistic people?
Could addiction even involve inertia-mediated experiences of time and memory?
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