September 12, 2017

Disappointment

Posted in Uncategorized tagged , , , , at 9:37 pm by chavisory

A friend of mine not long ago strongly recommended the television show True Detective to me (and I’d acquired HBONow recently for purposes of playing Game of Thrones catch-up), and that is how I came to be watching it one evening last week, as it happened, right when I learned from Twitter that Matthew McConaughey had partnered with Autism Speaks and Kiehl’s on a new autism awareness campaign.

It was an especially bitter moment of irony, but sadly not an unfamiliar one.

One of the hard things about learning to let yourself love things unreservedly again when you’ve quashed that instinct in yourself for much of your life—beyond the fear that it’ll be too much, that an obsession will consume you in a way you can’t sustain, that it’ll be off-putting to other people if you let it show, or that you’ll burn out your capacity for that kind of love—is that, with a not-insignificant frequency, an artist you really, really like and respect turns out to think people like you shouldn’t really be here.

It’s a difficult risk to contend with, when you’ve only just relatively recently learned to let go and let yourself fall in love again after so long, that every now and then, you’re going to be really into something or really intensely identify with a body of work (when that’s kind of a rare experience for us to begin with), and then wake up one morning to find that that creator thinks the world would be better off without you.

It makes it hard to let yourself enjoy something wholeheartedly, when you know you have to guard your heart against this possibility.

It affects what and how much I can let a thing mean to me once I know.

And it most definitely negatively affects my willingness to pay to see that artist’s work in the future.

Even beyond the fact of channeling huge amounts of money to an organization that’s been pretty useless at best and actively dangerous, at worst, to the very community it claims to speak for, this is the harm that it does to us, individually. We’re people built for overwhelming, obsessive joy, but it’s vulnerable to put yourself at the mercy of that passion and then have your trust in it smashed like that every now and then.

Maybe it seems like a small thing, comparatively, held up against all the things we struggle with. But it happens over and over and over again, and it takes a psychic toll over time. When you always have to be a little bit paranoid that this is how your enjoyment will be answered.

I don’t expect artists to be perfect people with wholly unproblematic views any more than I expect that from anyone else, and it’s not that I think autistic people uniquely should (or, realistically, could) be shielded from disappointment by public figures and celebrities, or that basically decent people can’t sincerely have different opinions about ethical matters. But, man…I really wish that more of them would do their research and search their own hearts and maybe, maybe, not put us in this position so damn often when choosing causes or charities to conspicuously support.

That’s all.

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September 4, 2017

Fix your hearts or die

Posted in Uncategorized tagged , , at 8:39 pm by chavisory

This post contains SPOILERS for episode 18 of Twin Peaks: The Return.

It occurred to me, as I was looking for a RedBubble artist who might put this motto on a t-shirt or sticker for me, that, to the extent that this show could be said to have a thesis or a moral in any coherent sense, this might well be it.

“Fix your hearts or die,” we’re initially told is what FBI Director Gordon Cole said to his skeptical colleagues upon Agent Denise Bryson’s decision to live openly as a transgender woman, but throughout this season of Twin Peaks:  The Return, we see this warning play out in the lives of other characters and in the world of Twin Peaks as a whole.

Nadine fixed her heart, deciding she was capable of finding joy apart from maintaining her control of Ed and giving Ed and Norma their freedom to pursue true happiness together.

Ben Horne has fixed his heart.  We last see him at the end of season 2 bemoaning that he’s only ever wanted to do good, to be good, and at long last he seems to have mostly figured it out, though it clearly hasn’t been an easy endeavor for him.

Bobby Briggs has fixed his heart.  We’ve seen him capable of such impulsive malevolence and recklessness in his younger days, and such goodness, joy, competence, and responsibility more recently.  Bobby has individually embodied many of the dualities of Twin Peaks that most of its characters seem to sit on one side or the other of.  It hasn’t been easy on him, either.  He knows what it is to do both good and evil, more than maybe any other character in this world.

Whereas many of the characters who’ve met nasty ends, or seem to be hurtling towards them, or who cause the destruction of others, are those who would not fix their hearts.  Steven.  Richard.  Ray.  The “truck you” guy.

Becky is learning, maybe, that you can’t fix the hearts of others.  Only your own.

We can’t undo the catastrophic vulnerability, the moral damage to the fabric of the world itself done by something like the advent of the atomic bomb.  But we can work to fix the corruption of our own hearts, the juxtaposition of the overwhelming scale of the sin of Trinity and Hiroshima and Nagasaki with the more pedestrian struggles of the characters to make their own lives bearable seems to say.  We can’t always help what happens to us, what is done to us, but we have a choice about whether to follow that darkness into the future.

Will Sarah Palmer be able to fix her broken heart, or will the darkness we saw behind her face consume her totally?  Is there damage to the human heart that can’t be fixed?

I wrote a lot of this before I watched last night’s two-part finale–and as I watched Cooper find Laura in the forest and take her hand, I felt not relief or hope, but a mounting dread.  It mounted as Coop and Diane drove over the dimensional border, down that dark highway, and into Odessa.  This wasn’t Bad Cooper, but previously, I think we’ve only seen Bad Cooper driving into darkness this way.

dark road

He was choosing wrong.  Everything about the recurring visual language here tells us that Coop is making a horrible mistake, even in his determination to do good.  He’s trying to undo what has been done, to turn back the consequences of undeniable evil, rather than to carry those lessons into the future.

I do think it’s interesting that I’ve felt differently about other stories involving timeline revision before, and I don’t know what to say exactly other than that the worlds of Doctor Who and Twin Peaks are not the same and don’t work in exactly the same way.  Amy’s story isn’t Laura’s, Audrey’s, or Cooper’s.  In this one, a timeline can only be healed by reckoning fully with grief and guilt.  And the characters we’ve seen turn out for the better are the ones–notably Bobby–who have done that within their own stories.

Looking back, appropriately enough, it was Bobby who back in the very first season took the entire town of Twin Peaks to task at Laura’s funeral for its denizens’ complicity in her death, for refusing to acknowledge what was going on in front of their eyes all along.  “Everybody knew she was in trouble, but we didn’t do anything.  All you good people.  You want to know who killed Laura?  We all did.”

Laura can’t simply not die, and everyone involved not have to fix their hearts.

(Furthermore, if the events of seasons 1 and 2 catalyzed by Laura’s death didn’t play out, then BOB is still loose in the world, not banished back to the Black Lodge.)

We cannot go back on what we’ve done without compounding destruction and chaos.  Only forward, if we dare to fix our hearts.

January 26, 2017

Distraction

Posted in Uncategorized tagged , , , at 2:16 am by chavisory

In the aftermath of Mike Pence’s attendance of Hamilton at which the cast delivered a harsh but courteous address to him personally, Trump unleashed a series of tweets bemoaning that the theater should be a “safe and special place” that attracted a storm of media and social networking attention.

The same week, Trump settled the fraud case against Trump University for $25 million.

“It’s just a distraction!” people yelled about the Hamilton debacle.

And though it may have been intended that way, the then president-elect’s tweets actually conveyed an entirely real message about how he views the proper role of the performing arts, free speech, and dissent in American society, and it was not benign or trivial at all.

On the day that we celebrated the collapse of Republican efforts to undermine the Office of Congressional Ethics, Merrick Garland’s chances of being confirmed to the Supreme Court were rapidly running out, and, lacking any evidence whatsoever that those events were connected or that the attempt to hobble the OCE was anything but a rushed, arrogant, disorganized power play, I saw another Facebook denizen declare:

“I knew it!  This was just planned to distract us.”

(Never mind that Merrick Garland’s nomination had languished for most of a year; it was not news.  It was not unexpected at all that it was going to expire without action from Congress.)

A few Republican legislators dared to rebuke Trump for his tweets mocking John Lewis; I note this is an interesting piece of information regarding who in the GOP might be more willing to openly oppose him on other matters.  I’m told “pay attention if you want, but know that it’s just a distraction.”

 

I’m just gonna throw this out there:

There are a lot of bad things happening all at once right now. Some of them are really big deals and some of them are less so. That doesn’t necessarily make any one of them a “distraction” from any of the others.

We’re also going to have things go right, and just because something goes right in the midst of other things going wrong, doesn’t make it a distraction.

We might not be able to control very much right now, but that doesn’t mean we can’t meaningfully influence outcomes, and when we manage to do that, even if our victory was relatively minor in scale, does not make it a distraction. It makes it a lesson in what we did right and how much further we should reach.

Seizing on the issues that we can influence strongly and immediately does not mean that we were “distracted” from something that meant more. Sometimes that may be true, but it’s not just automatically true that if we saw a chance and took it, that we were “distracted.”

There’s no shortage of things that need doing right now.  There’s no shortage of things that need attention.  Very few of them are inconsequential. Sometimes we’re going to benefit from unity of purpose and sometimes from diversity. I’m not saying not to be conscious of how we’re using energy, but just because something isn’t everything, doesn’t make it nothing.

That bad things will keep happening doesn’t make good ones not count.

 

One of the ironies is just how distracted they really are.

Trump is not on the same page with his Secretary of Defense about the value and legacy of NATO.

Trump is not on the same page with his Republican congress about the actual content of the ACA’s supposed eventual replacement.

The Republican congress was not on the same page with Trump or their constituents about the OCE.

Trump has to have his television time restricted like an impulsive child.

Trump is distracted by the hijinks of National Parks Service employees on Twitter.

Trump is distracted by dissent over the size of his fandom.

Trump is upset that protests and marches have disturbed his ability to “enjoy” the White House in the way he feels he should be able to.

We are not distracted.  There are 63 million of us and one of him.  Our resulting ability to pay attention to more than one bad thing at a time is not distraction.

Let’s not give undue time or energy to Twitter drama, but the fact that there are people paying attention to the content and implications of what he says directly to the American public on a media platform used by millions, is not distraction.

There was a time not that long ago at all when I thought that he was frighteningly good at derailment and distraction, but I’m not so sure of that anymore.

He is distracted.

I say keep him that way.

 

February 10, 2016

When did ‘The X-Files’ get this cool?

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

This is a screen capture of the top headlines from the New York Times Television section one day last month.

The_New_York_Times_-_Breaking_News__World_News___Multimedia

[Image description: Under the section heading “Television” on the New York Times online home page, featured headlines are “How Well Do You Know Your ‘X-Files’ Monsters?” “The X-Files Season 10 Premiere: A Crazier Mulder Than Usual,” and “A Word With: William B. Davis: The Cigarette Smoking Man of The X-Files Resurfaces.” Accompanying photograph is of actor Doug Hutchison as Eugene Victor Tooms, with glowing yellow eyes.]

It is a little bit hard to get words around my bafflement at this state of affairs. People are gushing with happiness all over my Facebook news feed. People who I never knew previously were huge X-Files fans. People who I don’t remember as being similarly obsessed when the show was last on the air.  (Some people who I just didn’t know yet, and I’m thankful that I do now, and not only for the purposes of squealing about The X-Files.)

Don’t get me wrong; I’m happy about this. That I can flail about The X-Files pretty visibly these days; everyone else is, too.  Maybe it just seems that way.

That somehow, between when I was 11, or 21, and now, it’s become perfectly acceptable, if not normal, to be openly obsessed with The X-Files.

It’s a weird thing to feel a little betrayed and befuddled over.

When I was a kid, when I was in college even, and got on about The X-Files, other people tended to get quiet and move away. People who had professed their mutual love of it just moments before. My adoration of this show was mostly something vaguely embarrassing, tolerated, indulged. Over the years I had a couple of friends who shared my interest to a limited extent…I was really excited when I met one other girl at camp who was into it, too. But we didn’t get close.  For a short span of time, I had the AOL message boards, but I was too young to have really great conversations there…and then AOL itself became more grief than it was worth, and I didn’t anymore.

A lot of teenagers would say they liked it, but then would shy away from actually talking about it. Were they saying they did just to make small talk? To placate me? Because that was the thing to do, when someone said they liked something, was to say you liked it, too, regardless of how clueless you actually were, because to admit you didn’t understand something that someone else did was the cardinal sin? (That would explain a lot, actually. Though I feel like I tried that a couple of times and it didn’t work out well.) Did they really, but it was too uncool to admit how much they did, especially to someone like me?

Was it the aliens?

My dedication remained no less steadfast over the years of the show, but it was something I got more and more embarrassed of, and in the later years of the show even fellow serious fans started dropping away. I know, I know, I missed Mulder, too. (If you watch some of those season 8-9 episodes now, they’re actually good—even I had no memory of some of them and was surprised at how good they were upon re-watch—but everyone was so disillusioned by Mulder’s departure that they just gave up.) But stuff just doesn’t let go of me that easily. And it became one of those loves that left me more and more alone over time instead of less.

I kind of just packed it away in my heart after the end of the show. I had a load-in the night of the series finale, which I made peace with videotaping for later. It was time to move on. The second movie got uniformly bad reviews; I continue to maintain its release was mishandled.  But I didn’t even get to go with anyone to the theater to see it.

A decade later I got onto Tumblr and was stunned to find a trove of loving, thoughtful, incisive commentary on the show, by people who were too young to have even watched it in its original run.

And now we’re at this point.

What happened? What changed?

Granted, for one thing, I have more neurodivergent female friends now. Dana Scully turns out to have been a cultural touchstone for a lot of girls who felt chronically weird and out of place. But that isn’t all; a lot of it isn’t coming from those people.

Did pervasive mistrust of the government come to seem less silly and paranoid in the post-9/11 Bush years?

Did everyone just get sick and tired of the culture that required we be aloof, indifferent, and uncaring?…of constantly swallowing their enthusiasm and sincerity and hiding what they loved?

(Even when I was too young to really get a lot of what the show was about, I think that may’ve been a huge factor in what attracted me to it. Mulder and Scully just cared so damn much, when all the grownups in my life always seemed to be telling me to care less.

Care less about the environment. Care less that school was an unfair, mean, and stupid waste of my time. Care less about being home by 8:00 on Friday night.)

It’s really great. It’s more than a little incredible to me. It feels in a way kind of like I just stumbled into the world the way it always should’ve been.

But I also can’t help but wonder, where was all this when I was 12, when it could’ve meant everything?

October 13, 2015

Achieving better autistic representation on stage

Posted in Marginalization tagged , , , , , at 2:53 am by chavisory

Months and months ago now, I saw an early preview performance of The Curious Incident of the Dog in the Nighttime on Broadway.

There were things I liked a lot about the show (most of the design, most of the acting), and things I didn’t like (the conclusion of a plot line involving abuse by a parent).  I found the show not un-problematic, but powerful and well-executed in many ways.  I was looking forward to discussing things like how well-rendered Christopher’s internal life and thought and emotional processes were, or whether the sensory intensity of the design was effective in conveying the experience of an autistic person to a largely non-autistic audience.

But I didn’t get to have a lot of those conversations, because most of the autistic community was occupied primarily not with critiquing the show or its protagonist’s portrayal, but with protesting the casting of the actor who portrayed Christopher, Alex Sharp, specifically with the criticism that an openly autistic actor should have been cast to play the role, and that going forward, theatrical productions should commit to having openly autistic actors play autistic characters.

I profoundly disagree with this stance for several reasons.

1. It has every potentiality to hurt and not help the situation.

Almost every argument I have seen for imposing an expectation that autistic characters be played only by autistic performers is equally applicable to argue that only non-autistic or non-disabled actors can play non-autistic or non-disabled characters.

Arguments that having life experience as a disabled person is the only way that an actor could realistically portray disability, or that physical, first-hand experience of autism is necessary to accurately “embody” an autistic character on stage, are perfectly reversible to argue that since people disabled from birth have no life experience of being non-disabled, their ability to represent non-disabled characters is necessarily inferior. Or that since autistic people have no first-hand, innate experience of being non-autistic, then how could they have the capacity to portray non-autistic characters?

If non-autistic actors can’t realistically portray autistic characters because of their lack of life experience, then how can autistic actors realistically portray non-autistic characters, when they don’t have that life experience?

This framing of the issue stands every likelihood of enshrining a bias that autistic actors are only capable of playing autistic roles.

2. It’s not the source of the problem.

The writing is, usually.

Of all the stage and screen portrayals of autistic characters I’ve ever seen, ranging from very bad to so good they took my breath away, and all played by actors who are non-autistic as far as I know, I have practically never thought that the problem was the actor. It’s almost always the writing—the attitude of the writer and of the other characters towards an autistic character. Are they positioned in the narrative as an object or a plot device or as a fully-fledged character central to their own story?

The writers of the Big Bang Theory, for instance, very clearly see Sheldon as an entirely appropriate target for the derision and mockery of the other characters. The screenwriter of Napoleon Dynamite positions Napoleon as an acceptable object of the patronizing amusement of the audience, not of true empathy or identification.

If a playwright is writing an autistic character with the attitude that they don’t need to be as fully developed and central to their own narrative arc as any other character, or based on largely inaccurate common knowledge about autism, then that is the core of the problem and is only going to be able to be partially mitigated by hiring an autistic actor to fight with the writing.

If a playwright and the rest of the creative team of a problematic work is convinced of the rightness of their portrayal because of what they think they know about autism, then putting an autistic actor into that role for the purpose of battling those misperceptions…frankly, that just sounds like an unbearable working environment.

And if actors are relying on media stereotypes or previous stage convention in order to animate their autistic characters, then what you are seeing is bad and lazy acting, not merely a result of the wrong kind of person playing a role.  But most actors in my experience care about and want to empathize with their characters.

What’s the supposition about how this would work, anyway? That if productions buy into an expectation that autistic actors play autistic roles, and they can’t find an autistic actor to fill an objectionable role, then the play won’t get done? That won’t happen. Productions get done when their producers care about them getting done and think they will sell tickets. If producers are unable to find an autistic actor willing to play a problematic role, they will find a non-autistic actor who will. There is no shortage there that’s going to keep a production from getting done.

3. It’s ethically dubious at best.

I have yet to figure out, or have anyone explain, how it’s possible to require that autistic characters be played by autistic actors without requiring that an actor disclose their disability in order to be considered for employment. And nothing about that sits well with me. I’m unclear how it would be legal under the ADA, either.

It’s also requiring that an actor out themselves into a professional world in which most people, including most people in positions of hiring power, still hold conventional beliefs about autistic people including that we’re incapable of things like reciprocity, emotional expression, empathy, and seeing things from points of view other than our own. In other words, the core requirements of acting. We don’t get to dictate that somebody take that risk with their career, or that a producer demand it.

I’ve had people ask why someone who didn’t want to out themselves would even answer a casting call…and it’s that acting roles are jobs. For Actors’ Equity members, they are how we earn our health insurance eligibility, pensions, and sometimes a living wage.

I don’t think we get to hold those things hostage to someone being willing or able to take a public stance about their own disability. That’s not an intrinsic requirement of what acting is. I don’t think it’s a good or fair idea to establish a double standard under which the expectation of openness to public scrutiny about one’s personal life, identity, and medical or psychiatric diagnoses is higher for disabled actors than non-disabled actors, or actors playing disabled roles vs. non-disabled roles. That doesn’t sound to me like the fairness or equality I think we’re seeking.

Absolutely none of this is to say that I don’t think there’s anything that can be done to change the situation or that we have to just accept poor representation.

1. Some Equity agreements and codes already require that producers “actively solicit” minority, female, and disabled performers to participate or audition.  More should, and maybe all of them should.

2. The responsibilities of producing companies to ensure the rights and accommodations of disabled performers needs to be strongly stated, posted at auditions, included in the information to be posted on call boards, etc…. including that if you disclose a disability or diagnosis to your employer, your privacy will be protected to the greatest extent possible.  Our unions need to strongly assure disabled performers that they will back them up in asserting their rights in the workplace, and how.

3.  There is a phenomenon in which non-disabled kids get to have hobbies/interests/activities because those things are considered good and constructive for their own sake, but autistic kids get everything good in their lives turned into therapy of some sort.  That’s wrong.  Theater education is, in and of itself, skill-building in the best ways.  Turning something that someone enjoys into just another avenue for therapy, for someone trying to fix you, is a huge turn-off.

We need to keep on combating stereotypes that suggest that autistic people can’t excel in the arts or humanities–that we lack empathy or imagination, for instance, or are mainly good for low-level, ultra-repetitive tech sector jobs.

And for the love of all that is good, stop telling kids that work in the arts isn’t realistic.  Parents, teachers, counselors, job coaches–stop it.  People work in the arts.  If a student is interested in pursuing the performing arts, help them connect with real opportunities for training and experience.

4.  Autistic people and allies–attend and critique productions involving autistic characters.  Companies should be taken to task for putting bad portrayals on stage, and should know that any time they are talking about autistic people, we are watching and listening.

I want more autistic and disabled actors playing autistic and disabled characters.  I want more autistic and disabled actors playing traditionally non-autistic and non-disabled characters.  I want autistic actors to be considered equally capable across the board of playing any character.  And I want non-autistic actors to gain a deeper and more realistic understanding of autism and disability in their work.  I don’t think that declaring that that work should be off-limits to non-autistic actors serves the causes of either empathy or artistry.

September 15, 2015

Thoughts on NeuroTribes

Posted in Uncategorized tagged , , , , , at 11:29 pm by chavisory

I wasn’t going to write a formal review of Steve Silberman’s NeuroTribes, because plenty of other people have done so admirably, but I finished reading today, and I just wanted to casually share a few things that struck me….

-The extent to which WWII and the rise of the Nazis shaped the personal history and viewpoints of so many of the early pioneers in recognizing autism: Asperger, Kanner, the Frankls, Bettelheim.  And the extent to which some of these people who had suffered horribly or lost family to the Nazi regime reacted so…counterintuitively… to the issue of autism, taking the route not of “these people are misunderstood and being treated unfairly,” but “this thing that we don’t understand, we have to stamp it out.”  Who saw what virulent xenophobia can do, who were themselves some of its victims, and yet who largely revisited it upon several generations of autistic kids.

I could almost read a whole other book just exploring the impact of WWII on the lives and thinking of the major players in the early history of autism’s recognition.

-The extent to which so many of these early prominent experts were making shit up.  So little interpretation of autistic traits or interiority or experience is substantiated by evidence as opposed to shoehorned into personal theories.  The extent to which so many things that people have thought they knew about autism over the years were just what some semi-professional like Rimland or Bettelheim decided about whatever their own pet theory was.   Like Rimland’s writing that real autistic people never spun or toe-walked and always had savant skills….

-And the extent to which personal agendas or personal ambitions shaped what so many of these people said about autism.  Kanner trying to play both sides of the field regarding whether autism was an inborn genetic feature, or inculcated by bad parenting, for instance.  Public opinion about autism and the fate of autistic people often come off as pawns in these self-appointed experts’ personal quests.  

-I did not expect to wind up so upset with Lorna Wing.  Her “parents won’t accept having a child with autism, but they’ll accept having a child with this interesting new syndrome!” line of reasoning regarding Asperger’s Syndrome….has really left us in a mess.  Even more than Asperger’s emphasizing the strengths over the disabilities of his clinic patients in attempting to safeguard their lives, this rationale would seem to have established and perpetuated this binary, divisive thinking in a lot of the parent-advocate world that Asperger’s Syndrome isn’t real autism, that “ultra high-functioning aspies” have a totally different condition than what their severely-affected, “classically autistic” children have, that acceptance and accommodation might be fine for people with Asperger’s Syndrome, but their children with “severe” autism need a cure, etc.

-There are multiple stories of parents being told that their infant child was mentally r*tarded, and that being taken at face value.  How did it come to be believed that was a thing you could even know about an infant?

-I think that this book is best considered not as a comprehensive history of autism or autistic people, or of autism as experienced by autistic people.  This book is laying out a really specific thesis about how what we think we know about autism came to be, and how professional and popular knowledge of autism has been distorted by that history.  It’s a modern history of how the personhood of autistic people has been libeled in the interest of certain ideologies and professional ambitions and how that is just starting to be undone.

And so, it’s not that I don’t share frustrations over lack of portrayal of autistic women and people of color (and also of rural autistic people, autistic people in the arts and humanities rather than STEM fields, queer autistic people, etc.), but knowledge of those people’s lives, too, is a casualty of the history of how and why people thought about autism, of the racism and sexism of those professionals and of the times in which they popularized their own views, and of a lot of the stereotypes and prejudices that they’ve left us with, and not simply a weakness of the book.

NeuroTribes is not a perfect book or a flawlessly comprehensive book, but it is a deeply necessary book.  I have seen other criticism that the stories and perspectives of autistic people ourselves seem to take a backseat for much of the book compared to the stories of professionals and researchers.  And I found that true, to an extent.  NeuroTribes is not the chronicle of autistic people and autistic culture that we still need and want, but I think that it stands a good chance of helping pave the way for those stories to gain more widespread acceptance.  It has been too easy for any substantial work by autistic people about autism to be written off as the perspective of only the token, exceptional, “very high functioning.”  Or of the supposedly very rare non-verbal person who finds a method of communication and turns out to actually have a profoundly articulate “intact mind” after all.  It’s been so easy to marginalize autistic narratives this way precisely because of the history of distortion at the hands of professionals we’ve been saddled with.  This isn’t the history of autistic people and autistic experience that we want; this is a history of our sidelining from our own lives and histories that helps begin to set the record straight about how that happened.  It’s a course correction, not a conclusion.

Anyway, consider this an open thread–I’d love to hear your thoughts.

September 26, 2014

Signal-boosting post!

Posted in Uncategorized tagged , , , , , , , , , , at 1:32 pm by chavisory

There are so, so many issues and projects and new art and fundraising campaigns out there right now that deserve time and attention and money, and I could almost write a post per day every day to get to all of them.  If I could I would just give the money to every project I like that needs it, but for the present moment I’ll have to settle for calling your attention to a few of my favorites:

1.  The deadline is coming up for submissions to Typed Words, Loud Voices!  This will be an anthology of writing by people who are non-speaking either some of the time or all of the time, who type to communicate.  The editors are Amy Sequenzia and Ibby Grace, two of my favorite advocates and bloggers.  Project description and submission guidelines are here!

2.  The Autism Women’s Network is planning an anthology on autism and race, and we have less than two days left in our fundraising campaign, with almost 50% of our goal to go!  This book is so important because the vast majority of discussion and visibility of autism centers on white autistic men, while autistic people of color suffer from an immense lack of recognition and understanding.

Project information and fundraiser are here.  If you are interested in submitting writing, guidelines are here.

3.  The WordPlay Shakespeare series, which I’ve been working on for about two years now with the New Book Press, has just released its third edition, Romeo & Juliet!  These are Shakespeare’s plays in dual text and video e-book format, and include both the full text and video of its performance by really stellar Broadway and Off-Broadway actors on every page, along with note-taking and study tools.

Almost every person, and teachers especially, who we show samples to, says that they wish they’d had these when they learned Shakespeare in high school.  I’m immensely proud of them, Romeo & Juliet is probably the play I’ve had the most fun working on so far as we’ve refined our understanding and process for this hybridized film/theater/new media format of production, and is available on iTunes and iBooks now.

4.  On Monday night, we had the CD release party and concert for the cast recording of Tamar of the River, a fantastically distinctive new musical that I stage managed last fall, the second original cast recording to be released for a show of mine.  If you have an interest in unique vocal music or storytelling technique, this is a piece you’ll probably love, and proceeds benefit Seeds of Peace, an organization that brings together young people from regions of seemingly intractable conflicts to work towards peaceful solutions.

5.  Out of Order is still fundraising!  This is a documentary about the journeys of LGBTQ candidates for ordination in the Presbyterian Church (USA), amidst evolving attitudes in the church about what it means to be both queer and a Christian.  I was excited for this to be out, like, yesterday, and the team (all of whom are working pro-bono out of belief in the importance of this film) is in a fundraising push to finish editing and post-production.

Please take a look at any or all of these that may be relevant to your interests. : )

September 16, 2014

The innocence and experience of Empire Records

Posted in Uncategorized tagged , , , , , at 3:09 pm by chavisory

The past few years have brought a series of movie and TV series anniversaries that…while I still can’t say I feel old, really put the relentlessness of time into perspective. The X-Files turning 21. The Princess Bride turning 25.

Empire Records turns 20 next year, making it older than I was when I first saw it. A generation of kids who weren’t even born when it came out are old enough to see it now.

This article (which is long, but worth reading all the way through) came up in my news feed recently about the story of its making and total commercial flop in 1995.

I first saw Empire Records when I was 15. I was at summer camp, one of the multiple summer academic programs where I spent my summers as a teenager. And literally all of my friends from the previous year had gotten too cool for me and stopped talking to me. It was the final night of camp, and the movie that had been voted on for everyone to stay up late and watch, was Empire Records.

I asked for it for, I think, my Valentine’s Day present the following year, and my mother bought it on VHS for me. I would name it without hesitation as one of my favorite movies for years, without ever being able to articulate why.

The article is an incredible nostalgia trip, and suffice it to say, the story of the making of the movie sounds almost as much fun as the movie. It’s comforting somehow to know that the cast of the movie were all truly friends, who loved making it as much as we’ve all loved it as we’ve grown up. Things surprised me (Coyote Shivers was Liv Tyler’s stepfather?! And A.J.’s checkered shirt was an “old-man” shirt? I thought it was the sexiest thing I had ever seen, though maybe that was just A.J. in it), and things didn’t (mischief and mayhem on the part of Ethan Embry), but a passage that really gave me pause finally gave me the scaffolding to explain how this became such an important movie to me:

Part of the feel of the film was also lost via Regency’s insistence that it remain PG-13, rather than have the R-rating of the original script; that’s why none of the characters could be shown actually smoking cigarettes or marijuana, why they couldn’t swear like actual teenagers, why Eddie couldn’t run his weed operation on the roof—why they couldn’t, in other words, fully behave like the teens they were meant to portray.

See, I actually have to epically disagree with Petersen and the filmmakers about this. I think it’s an immense strength of the movie that those sorts of depictions were dispensed with.

Because much as I love the movie, it’s not actually because I can particularly identify with any one character in it, as opposed to characteristics and combinations of traits and struggles of multiple characters (Corey’s academic prowess, with a hint of Warren’s resentment and insecurity and A.J.’s artistic ambitions)…and that even if I wasn’t there, the world they inhabited was a world I could inhabit.  (In some ways, unlike the world I actually did inhabit.)

And a huge part of that was the lack of completely rampant drug use and callous language. It’s not even that drug use or abuse wasn’t depicted in the world; it was—in Marc’s spending the day stoned on Eddie’s “special” brownies, and Corey’s admission of amphetamine abuse to keep up with schoolwork. It’s not, by a long stretch of the imagination, an anti-drug movie, but the world in which Empire Records exists isn’t one that revolves around getting fucked up. In some kind of wake of cynicism left behind by Generation X, there was this oppressive sense that real kids with real issues were all doing this stuff—and the movie as it turned out, apparently inadvertently, tacitly rejects that premise.

Because believe it or not, kids of my generation not doing drugs or acting out in those ways actually existed. Teenage culture without pervasive drug use actually existed, and the outlook that “oh this is what teenagers really do, though,” was a hugely alienating aspect of other movies about misfit teenagers for me (like Dazed and Confused, of which I remember not one single important thing).

I would hazard a guess that this aspect has actually contributed hugely to the movie’s long-term success, especially among, as the article notes, an audience slightly younger and more sheltered than that originally intended by the producers. The writing of Empire Records treats the problems and internal life of all of its characters with equal sincerity and seriousness, and that’s something that I really felt the lack of in a lot of media aimed more successfully at Generation X (even in things I did like and identify with in some regards, like Daria). It’s an unabashedly sincere and hopeful movie.

A movie like that, with a PG-13 rating, could be shown for movie night at summer camp, where a desperately lonely 15-year-old could fall in love with a story of hope that belonging somewhere exists. An R-rated movie with all the characters drinking/smoking/cursing for two solid hours, couldn’t.

It’s not an everyday occurrence that I aim heartfelt thanks to the MPAA for its contributions to a brilliant narrative decision, but today I do.

Because the themes of love and ambition, and enforced conformity vs. what it means to find a place where you really fit in the world, are pretty universal to teenagers, but contrary to a lot of mythmaking, pervasive drinking, smoking, and drug abuse actually weren’t. That wasn’t what teenagers all just did.

If Empire Records failed to coherently indict “The Man,” it did effectively undermine something snide and dismissive that had arisen in factions of teen culture, that very much conveyed that you had to be edgy or cynical or damaged enough for your problems or issues or dreams to matter.

Empire Records is exactly the movie it should have been.

empire records[Image description:  The characters Warren, Eddie, A.J., Corey, Jane, Joe, Lucas, Gina, Marc, and Deb sit on a building rooftop at night, under a lit neon sign reading “EMPIRE RECORDS, since 1959.”]

May 10, 2014

Behind the scenes of WordPlay!

Posted in Uncategorized tagged , , , , , at 6:14 pm by chavisory

If I may engage in some excuse-making for my recent absence from writing…I’ve been working for the past couple years on a new media project which I’m very proud of and excited about, and we just finished filming our third installment, the WordPlay Shakespeare edition of Romeo and Juliet, which took up most of my past month.

Here’s another good preview in which our director and publisher/producer talk a bit about the aim of the project.  Besides making Shakespeare less daunting for students in general, one of the things we’re hoping is that students with all kinds of learning differences and learning disabilities might find this a useful form of support.

It takes the actors some time to get used to working on the white cyc…it’s a pretty disorienting experience.  Apparently human brains think corners are a useful thing….

romeo_montaguePictured: John Leonard Thompson and Drew Ledbetter

A great snapshot by my ASM from the filming of the opening fight between the Montague and Capulet servants.

WordPlay Romeo Jump 140501

Pictured: Carman Lacivita, Kristin Villanueva, Drew Ledbetter
Photo by Hannah Barudin

Me in the studio, watching the script, and probably telling somebody to do something.  Look at that gorgeous spreadsheet on my computer….

IMG_1190

Photo by Alexander Parker

Romeo and Juliet will likely be available by the end of summer/early fall.  A Midsummer Night’s Dream and Macbeth are already available on iTunes!

Our New York Times review

Edutopia review

It’s been a fascinating thing to work on as a stage manager as well…both in learning to work in an entirely different medium, and very different capacity than what I’m used to doing, and in getting to help make something so permanent in the world.

April 2, 2014

A Call for Accountability

Posted in Uncategorized tagged , , , , , at 1:27 am by chavisory

To Autism Speaks and its supporters, for Autism Acceptance Day~

There’s a conversation that plays out over and over again, in the wake of the release of a PSA, press release, blog post, or video, painting autism in conventionally negative and dehumanizing terms.

Autistic people object that those descriptions do not fairly reflect the realities or value of our lives.  That while, yes, often it is hard, that’s not all our lives are.  That characterizations of “epidemic,” “tsunami,” or “national catastrophe” devalue our lives, and that we suffer when attacks on “autism” fall on us.  Which they do, always, because autism is not separable from us.  That we might wish some things were easier, but those issues need to be addressed with the complexity and nuance that they truly require to understand.

And invariably, someone will make the excuse that such rhetoric is necessary to raise awareness, to make the public feel a sense of urgency, to keep people interested, to get lawmakers invested in these issues, to raise money.

“But how does that fit on a billboard?  How do you put that into a one-line slogan?  Or a 30-second PSA?”

Guess what:  That is not our problem to solve.  It is not our fault, our job, or our responsibility.  It is not an excuse for you to malign our humanity and our worth.

It is not okay to demonize us and call our existence an epidemic, a tragedy, and a national disaster because that’s easier to fit on a billboard.

It’s not okay to instigate pity and fear against us because that’s easier than asking people to work to understand us more deeply.

It is morally and intellectually lazy, is what it is.  Since when does something being easier make it right or okay?  That’s what you’re saying.  That it’s easier on you to talk about our lives this way, so you get to, and our objections are meaningless.

Only…many, many autistic people have made themselves very clear about how awareness campaigns like this have done us more harm than good.

We understand that therapies cost money, that families need insurance coverage, that parents deserve respite, and that school systems need financing for the support services they’re required to provide.

But the beliefs about us that are inculcated—in the general public, in our family members, in our educators and therapists—by these kinds of ad campaigns, negatively impact the way we are actually treated by the medical establishment and in schools and therapy programs and by the people closest to us.  You don’t make sure a vulnerable population gets appropriate help and support by spreading vicious falsehoods about their condition, presenting them as objects of pity rather than full participants in their own lives, or disparaging their input on the actual effects of what you claim to be doing on their behalf.

The words you use about us have real-life consequences for us, and they’re not the ones you claim to intend.

This rationalization is arguably even more dehumanizing than the objectionable rhetoric itself—that we and the fullness of our lives are reducible to props for your awareness campaigns.  That our objections to misrepresentations of us don’t matter because they’re inconvenient to your ability to come up with billboard slogans.  That next to you being able to raise money in our name, the fact that the manner in which you’re doing so actually hurts us, is of no consequence.  That our ability to be treated like real, whole, present, self-aware, not stolen or missing or disappeared people is far less important than you having an easy time coming up with a catchy awareness campaign.

It is not our responsibility to be a sound byte for your convenience.  It is not our job to be the story the public wants to hear.  It’s not your kid’s job.

I won’t have to wait long for objections of ”But the low-functioning!  But the non-verbal!  But people who don’t have your abilities!”

IT’S NOT THEIR JOB, EITHER.  They are people; they are not storytelling devices, set dressing, blank slates or empty shells.  They have thoughts about their own lives; just because you don’t know what they are, does not give you the right to use them like that.

 

Autistic people talk and write a lot about our struggles.  Parents and families who are with us about acceptance and respect, talk openly and movingly about their challenges and their autistic kids’ obstacles.  We support each other in the hard things as well as the joyful.  You can do that without devaluing our lives or resorting to antiscientific, eugenicist alarmism.  The bloggers, activists, parents, and families of the neurodiversity community prove it every day.

Here’s what I think:  If you can’t figure out how to portray our issues and make a compassionate case for our support needs, succinctly and without resorting to dehumanizing us or devaluing our lives, then autistic people are not the ones who lack creativity, resourcefulness, communicative abilities, or empathy.

And just because I can’t necessarily give you a pat, convenient answer right now, on the spot, of how to best represent neurodiversity and autism acceptance in an easy-to-swallow PR campaign, does not make it an unsolvable problem that excuses your continued public relations war against us.  I’m not in public relations or marketing because that genre of writing is not my gift.  But it is somebody’s.  In fact, I’m pretty sure this is something people actually go to college and grad school to learn how to do well—to represent the message you wish to convey to the public cleverly and concisely.  I’m pretty sure that businesses routinely actually hire and pay large salaries to people who do this professionally.  I’d be willing to bet that you already do so, in order to craft the message you have so successfully and insidiously.

Better messages have been crafted in social media campaigns, for the purpose of countering your own, by autistic people, neurodiversity bloggers, and parents with no budget, training, or free time.  Who are disabled, mentally ill, in chronic pain, who work full-time, who are in college or grad school, who are raising high-needs disabled children, or some combination of all of the above.  Other organizations don’t seem to have a problem, either.

So you can do better.

The problem is not that the right message is too hard a story to sell; the problem is that the message you actually believe and wish to propagate is wrong.  It’s not that you couldn’t do the right thing if you put your minds—and voluminous advertising budget—to it; it’s that you don’t really want to because you don’t believe in it.

You have the budget to be making media campaigns like this, if that’s what you wanted.  You have the resources to be spreading awareness like this:

It’s not as if the truth isn’t dramatic or interesting enough:  That we have always existed, but only in recent decades provoked this intensity of mingled fascination and alarm.  That our society has quietly and systematically marginalized and excluded us on the basis of our cognitive, movement, and communication differences for centuries, pushing us to survive on the outskirts of society. That with the understanding of these traits as neurologically-based rather than the result of kidnapping by fairies, the stigma and scapegoating has actually focused and intensified.

That generations of us have been written off as uneducable and incapable of communication, disappeared and institutionalized. That it is still happening even though professionals and policy-makers have had every opportunity to know better by now.  That we are abused and bullied at devastating rates.

That under such hostile circumstances, some of us have been the foremost geniuses of science, math, music, and art.  We have made some of the most revolutionarily important contributions to humanity in physics, technology, and engineering.

We keep surviving, keep creating, keep loving, keep standing up for each other, keep believing we are actually worthy of a future.  We remain obsessively joyful.

That we’ve been so misunderstood and misinterpreted that most popular and professional characterizations of us are practically the opposite of the truth.   That it is routine and accepted for our families to be taught to fear and hate the way we are.  That you do not even begin to understand what you would rob the world of, to have it bereft of people like us.

I think that’s a pretty fascinating story, and urgent and important.  I know it’s more astonishing to me than practically anything you could make up.  It’s just one that requires a bit more self-reflection and active listening from your target audience than the easier one of rallying to defeat a common enemy.

As to how it fits on a billboard?  I don’t care.

If you are listening to our stories, if your intentions towards us are truly good, stop making us the targets of your laziness and lack of creativity.

The way we are is not the enemy.

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