January 20, 2016
There’s a group of assertions that have become common, among a fraction of parents who, superficially at least, believe themselves to be taking an accepting approach towards their child’s autism or disability.
They’re not necessarily looking for a cure. They’re not subjecting their kids to 40 hours per week of repressive therapy. They’re not bemoaning their grief for the non-autistic child they lost or the tragedy that their family’s life has become.
They’re just really insistent that autism not be allowed to be meaningful to who their child is.
“But it’s not who he is. It’s just something he happens to have.”
“It’s just part of who he is; it’s not all of who he is.”
“It’s part of her but it doesn’t define her.”
“Autism isn’t him, it’s something that happened to him.”
Lately it comes to dominate discussions that aren’t even about person-first vs. identity-first language choices, so fearful is the notion that autism might have any sway in who a child is.
And in some ways, I am more frustrated with this variety of denialism than with the way more openly hateful outlooks of curebie parents. In some ways, I think the parents who far more openly hate their children being autistic are being more honest, as deeply unfortunate as I find their position, than the ones hiding fear and disgust behind “There’s nothing wrong with my child as a person; this is only a thing that they have. It’s not really part of them.”
“It’s not who they are.”
Because that would be the worst thing.
What if it is, though?
What if they can’t meet your demands that they cut themselves off from that much of their psyches? What if they can’t or won’t hack themselves up that way?
As long as it’s not actually who you are, isn’t actually de-stigmatizing.
Just as long as you can let us believe that this isn’t really part of you is not actually acceptance.
Just as long as it doesn’t have real consequences for how you have to live your life.
Just as long as it doesn’t affect you in any significant, unavoidable way.
Just as long as it doesn’t mean anything to you, let alone anything good.
Just as long as it’s fundamentally separate from you.
If it kind of sounds like “Love the sinner, hate the sin,” that’s because it kind of feels like it, too.
Being forced to hold something true and essential about you at arm’s length for years and years, being told that you’re not really the person you are, that the real you, the correct you, is someone who doesn’t move through the world the way that you do…that you are not really like this, it’s just something that you have….
(Let me tell you something about trying to do this. The horrible part isn’t that it can’t work; it’s that it can, for some amount of time, anyway. The result isn’t a person who isn’t autistic, it’s a person who feels like a stranger or a ghost in their own life.)
As long as your whole experience of the world—the way language and emotion, music and light, passion and movement, space and time work—isn’t really innately woven into who you are…
It’s a variant, not a repudiation, of who you are is not acceptable. You’re only a person if you aren’t like this.
“But it’s not who he is.”
How would you know? (How good were your parents at reading your mind, at knowing how you truly and deeply felt about yourself as a child? How right were your parents about who you’d grow up to be? How psychic about these things are parents, generally speaking?) Would she tell you? Would she have the words to? What expectation have you given her about how you’ll react if she comes to you and says “Yes, it really is?” Have you exposed him to the diversity of first-person viewpoints that would allow him to know one way or the other? Is he allowed access to autistic people who describe their own experiences in various ways? Different autistic people do have different conceptions of what autism is to them. Most say that it is part of who we are, but some don’t; the point is that we all, individually, have the right to make those judgments about our experiences and internal lives and descriptive preferences. Do your children not have the same right to conceive of who they are or aren’t for themselves?
What if it actually is? What are you going to do then?
January 9, 2016
As I see various reactions to things like Donald Trump’s proposal to ban Muslims from entering the country, requiring American Muslims to register and wear ID tags, or the attempts of multiple mayors and governors to exclude Syrian refugees from residence in their cities and states, it’s common to see comparisons between the prejudices underlying those proposals and those that preceded events like the Japanese-American internment of World War 2, or America’s refusal of Jewish refugees from Europe.
These ideas are gaining traction again, it’s said, because Americans don’t know our history.
Takei’s remarks here are worth watching, but I disagree with his conclusions that the problem is that we don’t know this history.
Most everyone putting this stuff forward, or backing the politicians who do, I’m willing to bet, knows about the Japanese-American internment.
It’s just that they have some kind of reason or excuse for why it was justified. Why the human suffering was regrettable, but the reasoning for it was basically sound. Or why maybe it wasn’t right, but it was an understandable reaction. Or why it wasn’t really that bad. Why people were lucky to be in our concentration camps instead of German concentration camps. Or why what they’re advocating now wouldn’t be really, really the same thing.
Or on some level, they think that people who maintain that it was wrong then and it would be wrong now can’t really be serious. That they’re just saying what “everyone” else actually thinks but won’t admit.
I really suspect that leaders who promote these policies don’t fully get that those of us who object to them aren’t just trying not to look racist or sound politically correct–that we really think with deadly sincerity that the protections of the Constitution and ideals of equality before the law apply to everyone. That it is wrong, across the board, to single out a group for stigma or retribution based on their race, religion, or national origin. (Aside from that it has never made us safer.) Always. Not “unless they belong to a group that enough people are afraid of,” or “unless someone else who looked like them committed a high-profile crime,” or “unless their culture is one we don’t understand or approve of.”
I don’t think we don’t know our history. I think a lot of people just believe that their own prejudice is better. This time, their threat perception is accurate. This time, it’s truly necessary. This time, we know who the real wrong group of people is.
November 27, 2015
I lost a Facebook friend a few weeks ago. We didn’t know each other offline. I wonder if things would’ve gone differently if we had. A meme featuring what sounded like a Richard Dawkins-derived quote was shared. I protested. The conversation didn’t recover.
So here’s the thing. I understand that a lot of people say strident and absolutist things about religion out of anger at their own experiences. I can completely and fully accept someone else’s right to be hurt and resentful of their own bad religious experience. I am fully aware that such experiences are all too common and entirely real. No shortage of people have no shortage of solid reasons to be resentful of the religion they grew up with.
And I still just can’t deal with it when they go around declaring that “religion” is only ever this oppressive, anti-thought, patriarchal monolith. Because almost intrinsically, what that’s saying is, “Your faith tradition, your community, your religious background, don’t exist. Because religion that isn’t like this doesn’t exist.”
It’s no more true than the fact that the taiga exists makes deciduous forests not exist.
Those are both ecosystems. They’re both forests. They share some important features of forest ecosystems. But they are also different ecosystems in vital ways.
Temperate rainforests and tropical rainforests also both exist. Subtropical deserts and alpine deserts both exist.
I think I have not seen any other topic, especially among otherwise very well-educated, liberal people, about which it is still so accepted to say “My experience is the only genuine one. This was my experience, so that’s the way it really is.” And not just accepted, but considered clever and enlightened.
We don’t accept that with regard to sexuality or ethnic or cultural background, or gender, or even linguistic background (with AAVE and Appalachian dialects increasingly recognized as fully valid ways to speak English—there isn’t just one static, proper incarnation of “real” English). We increasingly don’t accept it with regard to neurology or disability.
(What I’m absolutely not saying is that anti-religious bigotry is the “last acceptable prejudice.” It isn’t. It’s simply a popular one in some factions of society. It’s not the last acceptable prejudice, but it is one of the broadest common examples of a No True Scotsman fallacy.)
But it is hugely acceptable and even considered laudable in many intellectual circles to declare “This is what religion is and this is what religion does and this is categorically true because it was my experience.”
Things get painfully ironic when anti-religion absolutists claiming that faith fundamentally precludes the exercise of rational skills, refuse to apply those same skills themselves when, and only when, the topic is the mere existence of varieties of religious faith other than those with which they are familiar. Then very observable facts don’t matter. World history doesn’t matter. Cultural diversity isn’t a thing. Religion only ever behaves in one way.
Listen. I have spent the vast majority of my life fighting my own erasure in multiple ways. There are so damned many ways in which people have tried to write me out of my own experience. “No, you can’t be both this and this.” Real people don’t work like that. I don’t understand, so you are mistaken about your own experience.
You are what we say you are and your experiences are what we say they are.
It didn’t work when I was ten, and it doesn’t now.
I don’t believe for a single solitary second that religious belief should be held above criticism or interrogation, or that the implications of statements of faith shouldn’t have to stand up to some kind of critical or ethical examination. There are all kinds of debates about religious thought that I’m happy to have, and that we should as a society be having. Pretty much the one fight that I just can’t with right now is that religious faith like that which I’ve experienced my entire life doesn’t actually exist. Or isn’t actually religion because it’s not what someone who doesn’t share that experience has decided it must be.
(And anyway, if religion is only, ever, inevitably repressive, misogynistic, homophobic, anti-intellectual, authoritarian, etc…. then how do we expect to be able to ask religious communities to be better? If the only true alternative is that they cease to exist? We actually lose a lot of ability to make useful criticisms if religion can only be considered as this insidious, monolithic, one-dimensional thing, not taking into account actual diversity of belief and practice.)
And I’m just at a point right now where I can’t cope with it or engage with it. And I don’t think that fully owning the fact that so many people have been hurt by religion means that I have to shut up and take it in the face of blatant denial of the very existence or possibility of experiences that are not that, or of communities like the one I grew up in and like the one I’m blessed enough to have now, and of even more faith experiences outside even my own ability to imagine or conceive of.
There’s a difference between listening, and consenting to erasure.
But having these arguments turns out to be constructive an infinitesimally small percentage of the time.
Relationships in which I have to continually defend the existence and acceptability of something pretty integral to who I am and my experience of the world are not relationships I have the energy for right now. And frankly I become skeptical of your feminism or your anti-racism or your neurodiversity acceptance if you then go and say “Religion should be eradicated.” That’s a serious qualifier on your support for the self-determination of people whose religious or faith experience is intrinsically tied up with their lived experience of gender, family, racial identity, culture, or neurodivergence.
I think people can be not bad people, and be validly hurt in ways that don’t play well together, and with sadness, I conclude that that may be the case if someone else’s pain means that they have to make these absolutist pronouncements that fundamentally misrepresent or erase another group of people and their belief systems.
October 13, 2015
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
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 1, 2015
Almost time to bid farewell to a long, weird, wonderful summer.