March 20, 2018

Up from under

Posted in Uncategorized tagged , , , , , at 2:06 pm by chavisory

The Brooklyn Bridge, late winter, post-poetry reading and tacos with friends from out of town this weekend


March 11, 2018

The Shape of Love: Cupid and Psyche and other considerations of monstrosity in “The Shape of Water”

Posted in Uncategorized tagged , , , at 7:35 pm by chavisory

The truth is that I wasn’t going to write about the Shape of Water at all. I wasn’t going to see the Shape of Water at all.

The truth is that I can still sometimes fall prey to the mental trap of feeling compelled to avoid engagement with a work, either out of fear that it cannot possibly live up to an artist’s beloved earlier work (which in terms of Guillermo del Toro’s work is Pan’s Labyrinth for me), to preemptively protect myself from disappointment or out of fear that it will be too good, too fraught, will touch me too closely in ways I don’t know how to handle or will set off a new obsession that I don’t have time for.

Also, frankly, movie tickets are $16.50 here.

But then something happened, which was that, similarly to when it became apparent that I needed to see Mad Max: Fury Road, despite it not really being my genre at all, just because it was making MRA’s so mad that I had to see what it was about, I was starting to see a particularly enraging bit of criticism crop up on social media, even well before the movie’s release:

That it was just awful that the protagonist of the Shape of Water would be a woman who was “literally silent.”

Because it was evidently unimaginable that women with communication disabilities…exist?  Or count as women?  Or should get stories. Let alone be heroines. I saw the movie with a friend from work and we practiced our ASL while we waited through the commercials.

Prepared to defend the film against further charges that portrayal of a non-speaking woman constituted irredeemable misogyny (it’s a topic well beyond the scope of this post, but mainstream feminism has something of a troubled history when it comes to its regard of disabled women), I was honestly unprepared for the heatedness of some of the condemnations that have subsequently emerged from the disability community itself for yet other reasons.

“I found that really unfortunate because it sort of reproduces the stereotype that non-verbal people can’t express themselves in a way that’s actually comfortable or natural for them. And then also it reproduces the stereotype that disability is like a cage,” says Aimee Louw in an article at CBC Radio.

Elsa Sjunneson-Henry writes, “I wanted to feel included in the human world. Instead, the film reinforced the narrative that I belong below the surface, to be put on display when it suits the narrative.”

I just hadn’t felt that way at all.

It’s not common to see a non-speaking woman as a protagonist with control over her own life, with work, with friends, with sexual agency, in a blockbuster movie, or anywhere, really. It was nice. I loved that her power, her worth, her fulfillment as a character, weren’t made to be dependent on her “finding her voice,” as someone for whom speech did not come easily and never will and who has often felt, especially as a child, that people wanted my speech more than they really wanted almost anything else about me. I don’t really look to movies to be “empowering,” but I found it a resonant, meaningful experience, personally, as well as beautifully designed. It’s also one of very few films that very explicitly centers women’s strength and relationships that I didn’t find myself intensely alienated by.

People can, of course, have sincerely different interpretations of a work, but I was curious about the sheer intensity of the disconnect between the way I felt about it and the way that other viewers have.

One of the first things I wondered was whether there was simply a generational difference at play. Guillermo del Toro, after all, is closer to my father’s age than my own or most of my peers who are likely to see the movie. Whether it was possible that disabled and autistic people, or even just those who felt intensely different, who grew up in a different time, who might’ve been far less likely to be diagnosed or identified with a distinct label at all, might be more likely to identify with fairy tales or story book monsters than people who grew up with an available narrative of disability, even if it wasn’t a particularly good one, to work with or push back against.

Whereas many of us who didn’t have those explanations available at all, filled in the blanks in our minds in some interesting ways, including various iterations of not feeling completely human. (I distinctly remember identifying most with the dragon in a beautifully illustrated version of “Saint George and the Dragon” that was read to me as a small child.)

While I don’t ultimately think that age of viewership presents a consistent factor in interpretation or opinion of the film—I didn’t conduct a formal poll, but in asking and looking around a bit, I did encounter people both older and younger than me who loved it, and people with both more readily identifiable disabilities and those that are often called “invisible” who hated it—I did find something curious to me as I started thinking about the Shape of Water in relation to the work of other authors I know and love who write roughly in the genre of adapted fairy tale or who adopt the frameworks of fairy tales or fables.

Guillermo del Toro was born in 1964.

Neil Gaiman (author of so many things, but I think most relevantly for purposes of comparison here, The Ocean at the End of the Lane) was born in 1960.

Keith Donohue (author of The Stolen Child, Angels of Destruction, The Boy Who Drew Monsters, The Motion of Puppets) was born in 1959.

Gregory Maguire (author of Wicked; Confessions of an Ugly Stepsister; Mirror Mirror; and After Alice, among others) was born in 1954.

That is, tales like this seem to me to be being told particularly by men of a certain generation, frequently involving girls and women in central roles in somewhat magical circumstances, and including girls and women with disabilities at a non-trivial rate, possibly to navigate experiences involving vulnerability, social marginalization, perhaps issues of gender and sexuality, that could not be openly articulated or acknowledged in a certain time and place. So my first conjecture is that the Shape of Water resides well within a storytelling tradition of using fairy tale and fantasy to navigate experiences of outsider-hood, vulnerability, and difference.

(And yes, I am interested at the absence of women from that author list of mine. I don’t know whether women of that generation weren’t writing nearly as much in that genre, or whether they simply haven’t come to my attention. It certainly isn’t that there’s a general lack of female authors in my reading list in general, so I’m curious.)

And while it is not a mode of narrative that everyone has to, or does, like or identify with, I find myself failing to feel that it is categorically demeaning or objectifying of disabled people, rather than a fairly common expression of emotional experiences of many of what it is to feel oneself othered or devalued by dominant social strictures regarding who is acceptable. Who is fully human. What is normal.

“It was not considered normal,” del Toro has said regarding his childhood pre-occupation with monsters. “At one point I was taken to a psychologist, who gave me a bunch of clay and said make something. I made a skeleton. I don’t think I passed that test.”

Ultimately, these stories can help give us a vocabulary with which to hijack and undermine those strictures.


There are ways in which identification with the monstrous can be protective, defiant, or represent a stand for personal integrity. “FINE, then I’ll BE A MONSTER,” if I will always be a monster to you anyway, or a broken, failed attempt at what your conception of human is, it seems to me creators who align their heroes with the monstrous are saying. “Maybe I am what you say I am. And would that actually be so bad?”

As I had this some of this discussion on Twitter, I was also reminded of Huck Finn’s declaration in the musical adaption of his story, Big River. “ALRIGHT, I’ll GO TO HELL,” he screams as he decides to do what is actually the right and redeeming thing, though not in the view of his society. “I’ll take up wickedness again, which is my line, being brought up to it. And for starters, I’ll steal Jim out of slavery again. And if I can think of something worse, I’ll do that, too.”

If what society considers good is to return a man to slavery, and to attempt to forestall that event is wicked, then I will not be good, says Huck.

If it is human to countenance the torture and destruction of a sentient, complex being for human political convenience, then we are called on not to identify with that characterization of what it is to be human, or with what those who uphold those power structures tell us is human.

“If this is wrong, then I don’t want to be right,” these characters declare. If it’s wrong to be embodied differently, to communicate differently, to love differently. If it’s wrong to empathize beyond the bounds of who your society says is a person worthy of it. If it’s wrong to value the freedom and dignity of those unlike yourself.

If the way that characters like Strickland say is the only right way to be human…

Then you can take your “humanity” and shove it.


Though much has been said about Elisa’s monologue in ASL to Giles about her conviction that they must rescue the Amphibian Man, just as revealing of the film’s theme, I believe, is a line spoken by Strickland:

“You may think that thing looks human — stands on two legs — but we’re created in the Lord’s image. And you don’t think that’s what the Lord looks like, do you?”

…which makes explicit the tension between god, monster, and human present in most stories derived from the myth of Cupid and Psyche, of which the Shape of Water is one (as well as “Beauty and the Beast” tales, and, I’d be willing to make a strong argument, Shrek.) That the plot of the Shape of Water is so resonant with the Cupid and Psyche tale is very informative of how both Elisa and the Amphibian Man are positioned in the story.

The Cupid and Psyche story has been important to me since I first read it, and I’m not even sure I could fully articulate why.

(The name of Giles’s ill-fated cat, Pandora, also points us gently in the direction of making associations with Greek mythology.)

In the myth, after the human princess Psyche is called more beautiful than Venus, Venus decrees Psyche be punished for the supposed crime of arrogantly imagining herself above her station by being induced to fall in love with “some low, mean, unworthy being.” (Cupid, of course, takes pity and wounds himself instead of Psyche, causing himself to fall in love with her.) To appease the gods, her parents prepare to sacrifice Psyche on a mountaintop, imagining her fated husband to be “a monster whom neither gods nor men can resist.”

The monster, however, turns out to be a god. Cupid, the god of Love himself.

Jealous, Psyche’s sisters insist that her unseen husband is in fact a terrible monster who intends, eventually, to devour her, and persuade her to betray his trust and view his true form by lamplight. In commanding the heroine’s loyalty to the realm of the “human,” these characters are also attempting to enforce their own value judgments about what constitutes personhood, as Gaston and the townspeople do in the animated version of Beauty and the Beast most of us are probably familiar with, as Beauty’s sisters impel her to do in other incarnations of the tale (while Belle in the Disney version was the only daughter of an eccentric tinkerer, in older versions of the story, she is the third daughter of a prosperous merchant), as Giles briefly does when he tries to discourage Elisa from her determination to save the Amphibian Man, declaring “he’s not even human.”

In resisting or rejecting those commands (which Psyche initially does not, to her own suffering), the heroine rejects the antagonist’s values and those of a repressive, unjust society.

In repeatedly calling her a “princess” in his own retelling, Giles identifies her with Psyche, Beauty, and other women of royalty and status who usually fulfill this role in the Cupid and Psyche tale. Del Toro, too, is making a statement by paralleling a frightful (even if god-like, and in his way, beneficent) amphibian creature with Love, and a scarred, disabled, lowly-regarded and awkward woman with Beauty.

Love is not only for the pretty, typically abled, socially valued, or heterosexual. Beauty is not only what the convention of the majority considers desirable.

As Psyche is given ambrosia to drink and becomes immortal herself at the conclusion of her trials, Elisa is transformed into the same kind of being as the Amphibian Man—a god. Whereas most of society’s preferred disability narrative is that we become more fully human in becoming less disabled (or at least trying to look like it), Elisa doesn’t do that. She becomes more wholly herself in becoming more, not less, of what conventional human society deems broken or undesirable about her.


I also didn’t find The Shape of Water particularly off-putting from a disability perspective for other reasons.

Primarily, the problem of the story isn’t Elisa’s disability, or the Amphibian Man’s monstrosity. Just like it isn’t Giles’s gayness or Zelda’s blackness, though we see the cruelty and injustice that both are subjected to for those characteristics. That these two characters are the people most closely allied with the romantic duo is not an accident or coincidence.

The problem is society’s relegation of people like them to less than wholly human status. The problem is the unchallenged ability of elements like Strickland within that society to exercise authoritarian, even deadly, control over the bodies, the freedom, the fates, of those whose being they deem inferior or abominable.

That, the movie says, is wrong. And that is a concept that powerful factions of our society still struggle with or reject entirely.

Another prominent criticism centers on Elisa’s dream sequence in which she sings, imagining herself the star of a movie musical, as unrealistic or portraying disability itself as a cage from which she can only wish to be free. I did cringe during this segment of the movie, not because I felt that way about it, but because I knew that it would elicit a great deal of the kind of condemnation which it did. Though I experienced it not that way at all, but rather as a variety of fantasy very familiar to my own experience, that things would be better if it were easier to say what I wanted. If I were graceful in a way that I’m not. Is it overused? Yes. Is it an experience that I’m remotely interested in making unspeakable? No. We have a right to full range of human emotional experiences, including wishful thinking and politically imperfect personal fantasies. I won’t denigrate the way that anyone else felt about this sequence.  It was difficult to watch.  But we also have a right to ambivalence.

But there’s an argument to be made that when Elisa dreams herself in the movie scene, what she’s really wishing for is not to be speaking, or non-disabled, but to experience herself in the same kinds of romantic situations that fill the movies she herself so loves. And again, the reason she cannot have that in the world she actually lives in is not the fault of her disability, but of the ways in which her society isolates and makes invisible people like her. (Where are other humans of her “own kind” in her world in this time and place? Well, a lot of them are institutionalized.)

“You don’t have to be marginalized in some way to be swept up in its beauty and romance,” Sarah Kurchak writes of the movie in her review. “But if you happen to have had a long-term unrequited relationship with the cinema, there’s a certain joyful rush that comes from having the object of your affections finally turn around and notice that you’ve been there all along.”  And in Elisa herself, that is what del Toro has given to many of us.

Not only in that Elisa Esposito, the character, is disabled. Sally Hawkins is weird-looking. She isn’t conventionally pretty. She isn’t what most people probably expect a leading lady to look like. (For the same reasons, I’ve enjoyed watching Eddie Redmayne’s career ascension to leading man. How often do we see men who look like him portrayed as romantic heroes?  Not that his movies have always been un-problematic, but I do think that’s important.) And as someone who never will meet mainstream expectations of feminine beauty, I appreciated it.


While I am by far not the first to observe this, I find myself compelled to agree that any consideration of del Toro’s storytelling is incomplete without attention to his Catholicism.

Del Toro himself says, “Catholicism is a big influence. For me, it cemented virtue and pain in a single emotion — that in order to achieve goodness you have to suffer. Of course, it is also a faith full of ghosts and gore and gargoyles… And the side effect was, I ended up thinking that monsters are sort of the patron saints of imperfection. I try to celebrate imperfection in my movies; the really scary characters are always the ones who insist everything has to be perfect.”

Christianity (at its best) and Christ himself concern themselves with the dignity and value of the vulnerable, the oppressed, and the powerless. Those, fittingly, who are the heroes of this film.

Of course the Church has often, and spectacularly, failed to uphold those very values. Throughout its history it has often been all too ready to protect the privileged and powerful at the expense of its avowed duties to the widow, the orphan, the stranger, the weak. The portrayal of Strickland’s superficially picture-perfect family life—nuclear, hetero-normative, male-headed and religiously-sanctioned, yet also harboring deep pathologies and abuses of power—juxtaposed with the more genuine, equal, yet highly stigmatized and legally unprotected intimacies of both sexual love and friendship between the four main protagonists, is intended to draw attention to this very hypocrisy.

The difference between the Church’s promises, and some of its realities, is what’s on display in Strickland’s family unit.

And of course the parallel with Christ in the trope of resurrection of the wounded god is unavoidable; Amphibian Man and Elisa both die for the sins of a less understanding and compassionate world. The sin, that which separates us from divinity (from full humanity, from existing in the image of God), is cruelty towards that which we fear or seek to control. Not embodied difference, not disability, not imperfection. Not wish fulfillment fantasies or loving that which society considers strange or unacceptable.


Just another brief note on del Toro’s body of work in general: I haven’t seen Pan’s Labyrinth in a long time, but I did wind up re-watching the trailer this week, and it becomes apparent to me that the theme of “princess reborn from a secret magical land” (underground in Pan’s Labyrinth, underwater in The Shape of Water) occupies a larger place in the world of his filmography than I can probably address solely with regard to the Shape of Water.

I don’t think I know yet what it means in his personal mythology; I don’t know enough to know whether I like it or not. But it definitely is a larger trope in his work in which he has involved both a disabled and a non-disabled female protagonist, so I am very hesitant to try to discern any statement about his views of the proper place of disabled people in society from its occurrence in the Shape of Water.

Likewise, Elisa’s disability is not the problem solved by her death and resurrection. Elisa, like Ofelia, the heroine of Pan’s Labyrinth, dies in the act of attempting to protect another from authoritarian violence. She dies not because of what she is but because somebody kills her. Somebody who could not tolerate the challenge that her innate strength and her allegiance to her own conscience posed to his power and presumption of righteousness. Not because people like her simply don’t belong in the world. That’s the viewpoint of the film’s unambiguous villain.


Far from leading me to feel unwanted in the world, I believe Del Toro has woven together elements from a tradition in fiction of women and girls as capable protagonists in fairy tale settings, myth, and a Christianity populated by the weird and wonderful to tell a story that openly repudiates the values of those who would say that certain kinds of people don’t belong in the world.

Ultimately, however, I do very much want to see a far broader range of types of roles and stories unquestionably open to disabled characters and performers alike. What I do not want to see is for us to renounce traditions of storytelling in which those of us who find ourselves alienated again and again by the stories that society tries to tell us about ourselves, who cannot use that language, have been able to find another one in the realms of the numinous. In which we can find a certain freedom in embracing and finding power in what society says is our brokenness or monstrousness. In saying “Maybe I am.”

“I think what we need,” comments Kit Mead, “is, shockingly enough, a range of disability stories and representation…. like…. ones that show the otherness we feel, and ones that don’t, and ones that are somewhere in between.”

I want us all to expand the repertoire of stories that we know how to tell about disabled and marginalized experience, not constrict our ability to tell ones like this. An emotional and metaphoric landscape with as rich a history and as luminous with possibility as fairy tale is not one I’m willing to give up.

February 27, 2018

An offering to the Fair Folk of Central Park, I’m pretty sure

Posted in City life, Uncategorized, Weird stuff tagged , , at 11:14 pm by chavisory


FullSizeRender 2

FullSizeRender 3
Found on a very gentle hike around the North Woods about a week after spraining my knee.

Open to alternate suggestions than that these are faerie offerings.

I did not dare touch them.

February 11, 2018

Posted in Uncategorized tagged , , at 11:26 am by chavisory

In case you missed it, I’m over at the Thinking Person’s Guide to Autism this week, talking about misconceptions about the neurodiversity movement!

February 6, 2018

A poem on the underground wall

Posted in City life, Uncategorized tagged , , at 11:32 am by chavisory

let america be america again 59th st

[Image is part of Langston Hughes’s “Let America Be America Again,” printed on a black sticker in orange text, stuck on vertical beam on the 59th St. subway platform, that reads:

O, let America be America again-
The land that never has been yet-
And yet must be-
Out of the rack and ruin of our gangster death,
The rape and rot of graft, and stealth, and lies,
We, the people, must redeem
The land, the mines, the plants, the rivers.
The mountains and the endless plain-
And make America again!

Langston Hughes]

January 21, 2018


Posted in City life, Uncategorized tagged , , at 10:36 pm by chavisory


One of the things I loosely keep track of year to year is the first day of the year that it’s still light out when I leave work.  Depending on what I’m working on, sometimes it’s as late as May or June.

Being in daytime rehearsals right now, I think this year marks the earliest occurrence, and I stepped off the subway to this sky in early January.

November 1, 2017

Autistics Speaking Day 2017: What I would say to autistic people who want a cure

Posted in Uncategorized tagged , , , , at 2:12 am by chavisory


ASDay 2017

Autistics Speaking Day was founded several years ago in response to a particularly ill-conceived charity campaign, as a way of resisting the narrative that we are or should be silent or non-communicative. We’ve utilized it, largely, to talk and write about the truths of our lives and refute common misconceptions to a largely non-autistic audience.

It has been less focused on autistic people speaking to each other. That’s what I’m hoping to do today.

Recently I was asked, in the context of a broader conversation on Twitter about the foundational principles of neurodiversity, what I would say to autistic people who do want a cure or support the development of a cure for autism. This post is adapted from that discussion. I’m not sure it’s what the person who asked me expected, and I’m not sure how many people who fit that description might ever read this, but, well, this is what I would say.

1.  You have a right to your feelings. I’m not going to tell you that you shouldn’t think or feel this way. I’m not going to tell you that you only want this because of “internalized ableism.” I’ve never found attempts to argue other people out of their own feelings very effective, and I really hate it when other people try to tell me what I feel and why.

You have a right to feel the way you do about your own life. I’m sorry if you’ve encountered autistic communities where it was suggested that that wasn’t true.

I think too many of us spend our lives being told that by too many other people. It’s not right, and I’m not going to do it.

2.  However, your feelings and wishes are no more real and genuine, or more authentic an experience of autism, than mine are. I’m not sugarcoating the experience of autism when I talk about why I oppose cure-based research and favor acceptance; I’m telling the truth about conclusions I’ve come to from my own experiences as well as a lot of listening to other people from all sides of this debate. And it would be a mistake to assume that those experiences were easy or mild just because I have not come to the same conclusions that you have. Chimamanda Ngozi Adichie discusses “the danger of the single story” when the single story is a stereotype imposed from outside a culture or marginalized group. But I think one of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

Neurodiversity advocates get told a lot that we “don’t speak for all autistic people.” That’s true.

Neither do you.

3.  I actually think you should have a right to access any treatment or therapy (within certain standards of demonstrated safety and effectiveness that any drug or medical device is required, for good reasons, to meet in this country) that you and your health care providers think might make your life better or more comfortable. Like all of us should.

People who oppose or who do not personally desire a cure are not just the people who have everything easy, who have no real problems. We want our medical issues and other challenges taken seriously.

We just think they’re a poor excuse for why people like us shouldn’t exist at all.

4.  But a true cure for autism (that doesn’t consist of eugenic abortion based on genetic profile) is not only something that we are nowhere even remotely close to achieving, but seems, to me at least, increasingly unlikely to be achievable in light of current research. Autism isn’t something located in one part of the brain. In the vast majority of cases, it’s not attributable to a single gene or even to a small number of genes, or to any discernible damage or definite pathology, but involves differences in how the brain matures over time and processes information in complex and subtle ways.

Serious attempts at a cure, to date, have tended to be ethical and human rights catastrophes.

5.  I don’t say that to make you hopeless. I say it to strongly suggest that you not wait for a very hypothetical future in which you might be able to turn yourself non-autistic in order to try to be happier. To find the things that make you happy or satisfied and follow those things wherever they lead. Because if you’ve put all of your hopes for joy or contentment with your life in the basket of a potential cure, then you’ve already made your decision in a way that is very unlikely to have the resolution you want.

6.  In any way and to any degree that you can, get out of bad or incompatible environments. They can really easily make you feel like the problem when you’re not.

When you have, for a really long time, been surrounded by people who make everything about you into a problem, or only ever been in environments that sent the message that everything you want but can’t have is because of autism, then it can be very, very difficult to tell the difference between artificial, arbitrary barriers, and obstacles actually imposed by autism itself. And those messages, those arbitrary, imposed barriers, are very, very prevalent in our society and in a lot of the ways that our families, teachers, healthcare professionals, potential employers, and other people who have a lot of power in our lives, are taught to see and treat autistic people.

Those things aren’t just natural, inevitable consequences of being autistic, and learning how to recognize and challenge them might not make you change your mind, but life can be a lot more livable.

7.  There are ways in which I think the neurodiversity community could do a lot better for all of us.

I think we need to have more room for people who don’t necessarily feel prideful or self-accepting, who feel ambivalently, who are still coming to terms with difficult or ambivalent personal histories.

I think we need more room for people to admit to struggling, both with acceptance and with the pragmatic realities of being autistic.

I think we need to remember that neurodiversity is about the conviction that autistic and other neurodivergent people are truly and wholly human, with everything that that entails, that our existence is natural and innate to human biodiversity, and that it would be wrong to try to eliminate autism and autistic traits from the fabric of humanity; and not about feeling 100% positive about our lives or identities at every given moment.

That’s not something that’s expected of typically-developing, non-disabled humans in order to justify their continued existence.

I also think there are compromises we rightfully will not make. That the neurodiversity movement for the most part does not engage or condone “Well, I don’t need a cure and people like you might not need a cure, but low-functioning people do” rhetoric is not because we don’t understand how disabling autism can be. Indeed, some of the pioneers of the neurodiversity movement were and are very significantly disabled people. It’s because we believe that autistic people are real and whole people, no matter the intensity of their disabilities or their support needs, and that all of us have a right to our own thoughts and feelings and decisions about our lives. That if we’re serious about honoring diversity, we don’t get to say “We’re okay and intrinsically valuable the way we are, but people like you aren’t.”

There are a lot of things we could do better to find common ground with autistic people whose goals and desires differ from our own. That we won’t do that isn’t one of them.

October 24, 2017

Inside and outside

Posted in Uncategorized tagged , at 10:54 am by chavisory

Greenhouse at Wave Hill, Riverdale, NY.

October 5, 2017

Invisible history

Posted in Uncategorized tagged , , , , , , , at 2:00 pm by chavisory

I started watching Westworld last week. In a scene in the first episode, one of the android characters, a “host” in the immersive Wild West-themed amusement park, has found a photograph in his field, discarded by a guest, depicting a woman in modern clothing standing in Times Square at night. Disturbed and confused, he shows it to his daughter, Dolores, but she’s not similarly affected (at least, not yet).

Lacking any possible context or way to make sense of what she sees, she can only say over and over again, “It doesn’t look like anything to me.”

She can’t process the possible existence of a whole reality that she has no framework at all in which to understand.


With the premieres recently of both Atypical and The Good Doctor, I was having a conversation about fictional representation of autistic characters–what we wish we saw more of, what we find intolerable.

And one of the things I have managed to put my finger on that unsettles me consistently, that leaves me unable to connect with a lot of the portrayals I see, is the tendency for autistic adults or near-adults to be portrayed as baffled, bumbling, almost complete naïfs about the non-autistic social world and its expectations and the realities of how things work.

As if, at the age of 18 or even older, they walked out their front door and encountered an overwhelming and often hostile world for the first time yesterday.

When, in reality, and unless we have been terribly, inappropriately isolated or sheltered (though often even then, often especially then), we’re actually well-acquainted with the fact of a world that doesn’t work terribly well for us, and we’ve been navigating it for a long time.

We aren’t dropped into our world for the first time in the opening teaser of a television episode.

A lot of writers and actors seem to be able to get their heads around what autism basically is, in terms of language, sensory, and social communication difficulties. But then it’s as if they don’t know, or can’t extrapolate to, the full range of experiences that autistic people actually live. That things have happened to us, and things have happened in certain ways for us all our lives, and those things have had consequences for who we become and who we are.

So, for instance, by the time we’re adults, we have made a lot of social mistakes and had to deal with the fallout.

We’ve often had to be responsible for ourselves in ways that other people our age haven’t, because adults haven’t been reliable sources of support. We’ve had to teach ourselves things that everyone else seems to just know.

We’ve had to be careful in ways that other people don’t and problem-solve for ourselves in ways most people haven’t.

We have to know things that most people don’t about navigating the non-autistic world. And we know more about what we don’t know than most people even realize there is to know.

We have to anticipate being mistreated or misunderstood almost constantly.

We have dealt with a lot of abuse, ostracism, isolation, loneliness, being disbelieved about our experiences and perceptions, and violation of our autonomy.

We’ve had to work harder to not just fall through the cracks of the world. We’ve also experienced uniquely intense beauty and joy, as well as many of the common experiences and challenges of growing up that most adolescents and young adults experience.

All of those things have impacts, besides that people learn and grow and are affected by their histories as they age. People become competent at dealing with the circumstances of their own lives.


And without that grounding in personal history, you’re left trying to construct a character’s personality around a diagnostic checklist, and you wind up with characters who are basically walking autism in some kind of imaginary pure state—without patterns of experience, without memory, resilience, or emotional connective tissue—who therefore have the social navigation skills of 6-year-olds no matter how long they’ve supposedly actually lived on this earth.


The more I thought about it, the more I started to suspect that this is actually what people are talking about when they say things like “But you don’t seem autistic.”

It’s not just that we don’t behave like children or that we don’t have the same “kind” of autism as a character they’re familiar with or don’t seem to occupy the same place on the spectrum as their own or someone else’s child.

It’s that the autistic characters they are used to seeing have no depth of experience.

They are people without history.

A growing number of people know children diagnosed with autism. But autistic adults are still overwhelmingly likely to be undiagnosed, or closeted, or both—if they’re not isolated from their communities in group homes or institutions or segregated workplaces, and many still are. So many people don’t really know autistic adults, or at least don’t know that they do. Their knowledge base of autistic people is still being drawn from children, or from fictional representations based on clinical knowledge of children.

And that leaves the reality of our life experiences, both positive and negative, and their impact kind of invisible. So if autistic people change or grow as people, or pick up skills we weren’t expected to, it must be because we overcame or outgrew autism, or “must be very high-functioning” in the first place…and not because we are capable of learning from our own experiences and the demands of our environment.

I speculated once (apparently in a comment now lost to the depths of the internet, sorry) that the myth of autism as developmental stagnation or eternal childhood, and a lot of “not like my child” rhetoric directed at autistic adults, stems largely from this inscrutability of what the passage from childhood to adulthood looks like for autistic people.

“They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them,” writes Rabbi Ruti Regan.

Most people just don’t have a framework of knowledge about the substance of our lived experience.

So it doesn’t look like anything.


A lot of the time, when autistic people complain that autistic characters are unrealistic, it’s presumed to be an issue of a character not representing the traits or experiences of a certain faction of the autistic community, and we get responses like “But one character can never represent all autistic people.”

But that isn’t the problem. It’s not that they’re not exactly like ourselves; it’s that they have no depth or complexity because they have no lived experience, because their creators didn’t know how to give them one.

Well-meaning non-autistic people frequently protest that “You aren’t only autism!” but it usually isn’t we who seem to think that we are only autism and not an intricate amalgam of our innate character traits, our strengths and weaknesses, our personal histories, our thoughts and desires and fears and embodied experiences of the world.

And yes, autism pervades all of that. But it doesn’t comprise our personalities in a vacuum.

Just because we’re new to many non-autistic people’s conception of the world, doesn’t mean we’re actually new to the world. We have histories, and we are affected, like all people, by those histories.

September 29, 2017

From summer

Posted in Uncategorized tagged , at 1:01 am by chavisory

IMG_2531From the Walkway Over the Hudson in Poughkeepsie, NY, end of the summer.

Next page