April 14, 2020

In thanks for the legacy of Mel Baggs

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

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

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

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

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

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

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

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

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

January 28, 2020

Donation request–Autistic People of Color’s Fund

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

Hi all! As you may or may not know, I’m also a social media volunteer for the Autistic Women & Nonbinary Network (AWN Network). One of the community resources we make available is the Fund for Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment (or the Autistic People of Color’s Fund for short). The fund exists to provide direct, individual financial aid to autistic people of color for a variety of needs, due to the disproportionate barriers accessing services and community support often faced by autistic people of color.

In the past week or so, we have received a record number of applications for assistance.

I and many other autistic people have written often about how the financial priorities of the biggest and most visible autism organizations fail to support our actual well-being. If you’re able and would like to contribute in a way that will support the quality of life of autistic people materially and very, very immediately, the link for more information and how to donate is here.

January 15, 2020

Institutionalization and Daryl Hannah and autistic people like me

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

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

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

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

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

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

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

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

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

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

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

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

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

May 27, 2019

I identify as tired

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

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

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

But mostly I’m just so tired.

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

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

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

“Why?”

“I don’t know.”

I mean, I didn’t.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

tiredHannah Gadsby, another autistic performing artist who is tired.

May 23, 2018

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

Hey everyone!  I’ve got a new post over at TPGA again this week, “Autistic Commonality and the Illusion of ‘Quirky.'”  Check it out!

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 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!

http://www.thinkingautismguide.com/2018/02/what-neurodiversity-movement-doesand.html

March 16, 2017

Coping with the world–yeah, we get it.

Posted in Uncategorized tagged , , at 1:58 am by chavisory

{This post references the comments made here.}

Once, when I was still a stage management intern, I was assistant stage managing a show on which I was having a lot of trouble and just generally felt like I couldn’t keep up. Some of the reasons why I was having such a hard time under those particular circumstances are much more clear to me in retrospect, and some are honestly still a mystery. There were blind spots and skill deficits on my part involved. There were certain ways in which I was ill-prepared that both were and weren’t my fault. There were other factors at play that didn’t originate with me at all. But it certainly wasn’t that I was just being lazy or not trying or didn’t care enough.

I was having a talk about it with the production stage manager one day—I could see well enough even then that she was overwhelmed and unhappy herself—about why I was having so much difficulty doing the job she expected from me, and she said to me something along the lines of:

“You know, you’re going to have to take jobs sometimes that you don’t love just to pay the bills.”

I have possibly never wanted to hit someone in the face so badly as I did right then.

Not just because that was so not the issue. Not just because she was displaying no comprehension at all of how hard I was trying but just hitting some kind of internal brick wall that I couldn’t fully comprehend. Although both of those things were true.

But because… doing what I had to do just to get by, pushing myself into things that I didn’t really want to do because I didn’t think I had a choice… had been my whole entire fucking life for almost as long as I could even remember.

She said it the same way that people had always tended to say painfully obvious things about my own life to me as if they were concepts I’d just never been presented with before:

“Emily, you have to understand that not everyone is like you.”

“Emily, you’re going to have to learn to work with people different from you.”

“Emily, you have to realize that not everyone can do what you do.”

With all due respect: No shit, Sherlock.

I was rather overly familiar with the concept that I was going to have to do things I didn’t love to get by. I’d done a lot of jobs I didn’t love, and I would do a lot more. I’d done a lot of things that were hard and unpleasant and violating just to prove I could or would do anything I had to do. I had done awful things to myself.

And she had decided I was just being snotty and spoiled instead, when actually she just had no idea.

The way I felt in that moment—that violently sinking, helpless, unspeakably sad feeling of hearing your whole life erased in a single instant, in a single arrogant comment, and knowing that nothing you can say to defend yourself will matter—is about the same way I feel when we write intricately and agonizingly about both the internal and external obstacles we face as autistic people, about the injustice and damage of being erased from our own lives, about our rights and choices being made contingent on how well we can just pretend not to be disabled, and someone says something like

“It’s about ability to cope in the world.”

Let me ask you something.

What on earth makes you think that we don’t know that our ability to cope in the world is at issue here?

Literally everything and everyone tells us, without ceasing, that our disabilities are going to affect our ability to be successful, and that we’re just making things harder for ourselves by being different, and that “you have to be able to cope with the world!”

We didn’t just not think of that.

We didn’t just not notice.

We get told every day how much our inability to cope with the world is a problem.

We get told every day how much the things we can’t do are a problem.

We get told every day how we’ll “never be able to make it in the real world if you can’t [whatever arbitrary thing is the issue today].” That “the world isn’t going to change for you.”

We know.

We notice that everything is harder for us.

We notice that we can’t do things that other people take for granted.

We notice that you look down on us for this.

We notice that we have far fewer chances to succeed, and that we have our choices and autonomy constrained because of other people’s estimation of our ability to cope with the world.

We notice when people decide that it’s their place to make things as hard and unfair for us as they think they should be, and the excuse is always that it’s about our ability to cope with the world.

We are the ones who bear all the consequences of what it becomes okay to do to us in the name of our “ability to cope with the world.”  Like deciding that you’re justified in whatever it takes to make us successful in the world in the ways you think we should be …and if that means making us as normal as you can figure out how to, then so be it.

People treat us this way all the time, and we notice.

We get it. We get it like you cannot even fathom.

August 16, 2016

Deprivation of privacy and other thoughts

Posted in Marginalization tagged , , , at 1:03 am by chavisory

{This post is adapted from comments made elsewhere.  Also there’s profanity.}

From this post (Stop Isolating Autistic Adults and Calling it “Community-Based Housing“):

“It is dangerous to reveal private details about disabled people online—in part because it reinforces the narratives that we are burdens, people no one would miss if we just disappeared, or it tells people that it’s understandable to abuse and kill us because we are such burdens, and let’s all sympathize about what burdens our kids are.”

I want to draw attention to this quote because…in the neurodiversity and self-advocacy communities, we often draw parallels between the kind of thinking that excuses revealing personal or humiliating details about a child’s life online, or other various ways that disabled kids are treated differently from typically-developing kids, and the kind of thinking that ultimately excuses more overt abuse, dehumanization, and murder.

I think that those parallels are often true and justified.

But persistently violating someone’s privacy over time also just establishes a standard (to both that person and everyone around them) that it’s acceptable to persistently violate their privacy over time.

And that might seem like a small thing, comparatively speaking, but it is actually a harm in its own right, to set a precedent that a certain person, or that a certain kind of person, isn’t entitled to the same privacy and respect that other people are.

Teaching someone that they have no right to basic privacy is its own harm.

I think, having been at this a few years, that a lot of parents feel that drawing parallels between very common blogging practices, and (relatively) rare occurrences of murder or outrageous physical abuse, is hyperbolic and unhelpful and tars most frustrated, lonely, exhausted parents who are really trying the best they know how with too broadly incriminating a brush.

In some ways, I think that they are right. I know that the very vast majority of parent bloggers would never dream of deliberately harming their disabled children, don’t think of them as burdens who they wish would just disappear, and are horrified, not sympathetic, when abuse and murders come to light. No one has to convince me of that.

Not that I don’t think that the relationship between those things, and far more mundane mistreatment and ways of talking about autistic people isn’t real or isn’t dangerous; I think it is.

But often I think that jumping straight to the most rare and extreme consequences predictably inspires defensiveness and dismissal of what feel like ridiculous accusations, because most parents do find them unthinkable. (This isn’t a criticism of the author of this piece. This is a community-wide tendency, which in many cases is justified, and in some cases, I think, is less effective as a first line of argument.)

And what also gets lost is that these seemingly little, daily, constant violations—having physical discomfort or boundaries ignored, or having sensitive information revealed to an audience of strangers without your consent—are themselves a significant harm, even if an unintentional one. They don’t have to lead straight to overt dehumanization and murder in order to be wrong. They teach people subjected to them that they should not be able to expect the same level of consideration and respect as other people do.

Depriving someone of privacy over time—even in seemingly mundane and insignificant ways—erodes their sense of their own right to privacy over time.

That has consequences for the whole rest of a person’s life. That alone should be enough to be objectionable.

There are a couple of things I want to say about the comments on this article as well:

  1. “I am glad that you are a vocal self-advocate. I applaud your ability to do this. However, there are many who do not have a voice or are unable to convey their feelings and views. The person in the article is one. My daughter is another. And there are many, many others. So, what is your solution to help these individuals seek life opportunities?”

This is not a remotely new question, and yet people still throw this in our faces as if we’ve never heard it or thought of it before. As if we’ve never considered this, never encountered people more significantly disabled than ourselves, or even as if some of our fellow self-advocates aren’t, in fact, the very people they’re talking about, who have high support needs and can’t easily make their needs and desires understood.

As if we’re suddenly going to go “Oh, wow, we never thought of that! You’re right, some of us have more intensive needs than others, and that just undermines our whole entire belief system about the civil rights of disabled people.”

As if the self-advocacy and neurodiversity movements haven’t been answering this criticism for decades.

Parents, please, please take a little bit of time and read about the history of the disability rights movements. This discussion is not new, and some of the people who have been having it for many years have won some really important advances for people like your children. Read Jenny Morris’s Pride Against Prejudice, read about the history of isolated, planned farming communities and the Olmstead decision. Read Cal Montgomery’s “Critic of the Dawn,” and the discussions that happened here (the whole series, and all the comments, are well worth it) and here (again, all the comments).  There are a lot of instances in which we don’t want the same things, but there are a lot where we very much do, but I see people who seem to just not know the history of these issues trying to reinvent the wheel.

I have been following this very same debate since about 2004, but it has been going on for longer than I’ve been alive. Please familiarize yourself with it. You’re wondering how it’s possible that someone like your child could ever live in the community without you? Well, some of the people telling you it’s possible are the ones who have been coming up with solutions and insisting on her right to access them for a very long time.

You’re right, I’m very lucky to have the capabilities I do and relatively few support needs. I know. I’ve also come of age looking up to the activism of people who can’t speak, can’t live on their own, can’t manage their own personal care needs, who have been institutionalized or narrowly avoided institutionalization. We know that such people exist. Our positions about the housing and self-determination rights of disabled people include them. In many cases, were pioneered by them.

None of which means that solutions are easy or magical. But it really is not the case that we never thought to ask the question and it just destroys our whole position.

  1. “With us parents, it is our lifetime experience with our loved ones that gives us the right to plan their futures for when we are not there to advocate for them.”

If autistic/neurodiversity advocates were the ones saying “Because their disabilities are more severe than ours, your children deserve fewer rights to self-determination than we do. Your children don’t deserve to live in our communities, don’t deserve legal protection from wage and housing discrimination, and you should be forced to make all their decisions for them for the rest of your life…”

Parents would have a shit fit.

That would never, ever fly with you.

But we mostly aren’t the ones saying that. And it goes mostly unchallenged by non-disabled parents when other parents all but say just that in mainstream media coverage of autism and developmental disability.

Why is that?

I’m afraid I already know the answer, but I’m curious. Why is that?

April 27, 2016

The right to not understand

Posted in Uncategorized tagged , , , , , at 3:21 pm by chavisory

As I’m finishing this post, it’s nearing the end of Autism Acceptance Month, and almost Blogging Against Disablism Day (which is officially May 1), and the more I thought about getting around to writing it, the more I thought that it kind of stands at the intersection of those two things… acceptance of autism and disability, and opposition to prejudice based on disability.

We talk a lot during Autism Acceptance Month about the rights of autistic and disabled people to education, to employment opportunities, to accommodation and acceptance in public spaces. We talk a lot about our capabilities, and about what we understand about our experiences.

But I think that there needs to be an understood right of people—particularly young people—to not understand. And to not have that impact their right to access and to information.

Here are some examples of how what I’m talking about plays out:

My most-shared post is one in which I ask parents to tell their autistic kids that they are autistic. And every time it goes around, a certain number of people respond, pretty predictably, “But what if he doesn’t understand?”

Or “He’s too young to understand.”

Or “She’s too much in her own little world to understand.”

Or “She doesn’t look like she even notices she’s different. She wouldn’t understand.”

Or when we weigh in on issues of language preferences or sexual orientation or gender identity among autistic people, people say “My child can’t dress himself; he would never even understand this debate.”  Or “Well, you’re fortunate to be able to understand your experience this way, but my child wouldn’t.”

(Side note: There’s a lot I still don’t understand about gender identity. That doesn’t make discussion of it unimportant or useless to me. That would still be true if I couldn’t speak or type or dress myself…which I couldn’t when I was the age those kids are now.)

Or we talk about the importance of learning-disabled kids having access to the same curriculum that their non-disabled classmates do, not only material judged to be on their own instructional level.

“But what if they don’t understand” the same books as their classmates are reading?

 

Well, so what if they don’t understand? How do you know if you don’t let them even try? Is it the end of the world if you give someone a chance to engage with the same material as their age-mates and they don’t understand?

They might not, but what if they did? What if they would, but you wouldn’t even give them a shot?

 

We have to be allowed to not necessarily understand perfectly, not understand everything, not understand right away, or to try and not understand at all, without being declared forever incapable of understanding, if we’re going to get a fair chance to understand. Those have to be acceptable possibilities.

We also might understand differently. We might understand something from an angle that you hadn’t considered. We might understand something later. It is actually pretty common that we understand something suddenly, but after it’s distilled for a long, long time.

That we have access to the information is important, the whole time, not only in the moment when we come to understand it. (Somebody tell me who here really understood, like, Huckleberry Finn, or A Wrinkle in Time, or To Kill a Mockingbird, the first time you read it? To say nothing of something like Hamlet? Here’s a great essay about how practically everyone has spent many decades misunderstanding a well-known poem.  Yet we don’t preemptively decide of non-disabled students that they will not understand this poem, so they should not read it, even though chances are that they will not understand it.  White people are famously having a hard time understanding Beyoncé’s “Formation.” In my elementary school, we were taught to sing “This Land Is Your Land” in kindergarten, “Erie Canal” in second or third grade. I guarantee you that we did not understand what those songs are really about when we were five or seven or eight years old. I saw Peter, Paul, and Mary perform when I was about that age, too, and I did not understand “Blowin’ in the Wind” or “We Shall Overcome.” Does that mean we should have been denied any knowledge of those works?)

And none of this means that it doesn’t matter if information is presented to someone in a form that they can understand whenever possible, whether that means in simplified language, with pictures, subtitles, or in whatever way increases its accessibility. It means that preemptive assumptions about what someone will or won’t understand aren’t a reason to not even present them with the information (or discussion, or work of art, or material that the rest of their class is learning).

How are we supposed to wrestle with information we’re not allowed access to? How are we supposed to ever understand if the fact that we don’t understand is reason enough to keep us from the tools of understanding? Like, do you see the trap?

It starts to look like you don’t, in fact, want us to understand.

Non-disabled people are presumed to be capable of learning from experience and becoming better informed over time. Part of that process is necessarily not understanding something at some point.

If the benchmark we have to meet to be given vital information about ourselves and our own lives is that there is no point at which we don’t or can’t understand it, that’s a game we can never win, because that’s not possible.

If whatever assumption somebody wants to make about whether we will or won’t understand is enough to deny us the information that would allow us to exercise more informed control over our own lives…how are we ever supposed to gain the rights to information, or to greater autonomy?

Just don’t be disabled?

 

And one major irony is that we write and write and write and write about the importance of knowing, of having language for our experiences, about what it means to be autistic, to be disabled, about the positives and the negatives, about the harm of compliance training, about the harm of indistinguishability as a therapy goal, about what acceptance does and doesn’t mean—and the majority of non-disabled parents and professionals persist in not understanding. Often sincerely. But often willfully. A lot of people just struggle with what we’re saying, but a lot of people keep intentionally twisting and misrepresenting what we say and hearing only what they’re determined to hear.

And no one says that for the crime of not understanding, you forfeit your right to new information, or to information presented differently, or to any access to information, about yourself or the world, or your right to keep trying to understand, or to take time to process unfamiliar concepts.

Why is that?

My high school math teacher would say to us periodically, “Kids are always asking me, ‘when am I ever gonna use this?’ And the answer is…probably never. But if you don’t know it, then you definitely won’t.”

If someone is given access to a discussion or a set of information, it’s true, they might not understand it. They also might not be able to express what they do or don’t understand. If they’re not given access at all, they definitely won’t.

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