March 28, 2017
Got to see something incredibly cool this past week. I’ve been working on a staged reading of a new musical that did a presentation up in Binghamton/Johnson City, NY, at the Schorr Family Firehouse Stage. Next door is the Goodwill Theatre, which will eventually, when restored, be part of a four-venue performing arts complex. Our technical director was kind enough to take us on a guided tour.
It was a vaudeville house before it became a movie theater, one of the first in the country to show X-rated films before abandonment in the 1970’s or early ’80’s.
View of the stage from back of the house. The un-amplified sound from the stage is almost unbelievable.
Old note from the stage manager!
View from stage.
Second floor passageway to balcony seating and restrooms.
I feel incredibly privileged to get to do the job I do a lot of the time, but especially when I get to have experiences like this.
December 26, 2016
I hope everyone is having holidays as peaceful and restoring as possible.
When I don’t know what to do or where to start, I make lists.
I was moved to start a list a few days after election day, when everything felt very fearful and uncertain…when it seemed like nothing was impossible in the worst possible way.
As I started reading a lot about how to oppose a political regime the likes of which we’ve never really experienced before, and also Rebecca Solnit’s Hope in the Dark, about the necessity of hope and joy in activism, I felt like we needed a way not only to voice our opposition, but to account for what we are tangibly accomplishing in response.
Not to maintain that everything is really okay, not to worry, that it’s not as bad as it seems, or just to make ourselves feel better (although it has made me feel better). But to concretely track our successes at holding injustice and authoritarianism at bay, to remember not only that progressive and human rights victories can, do, and are still happening, but how they happen. Even now.
ETA: At least twelve pretty good things have happened in the world since election day. In particular, there have been important developments for the rights of trans and intersex people and disabled workers.
(A lesson that’s already really jumping out at me just from the list so far is that your city councils are important.)
The introductory post to Reckoning of Joy is here. I’ve also been including some resources and guides for taking action, inspiration, and musical encouragement.
Let’s get to work in the new year?
February 10, 2016
This is a screen capture of the top headlines from the New York Times Television section one day last month.
[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?
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.
June 19, 2015
The inspiration for this post emerged somewhat tangentially to an incident on Twitter several months ago, in which a pair of parent bloggers decided that publicly posting sensitive and humiliating information about their autistic teenager was a great thing to do for awareness. Plenty of other people wrote or responded to the inciting incident, so I don’t really feel the need to address it much further.
But something else happened in the aftermath that I actually do think deserves to be talked about more. It’s not even really about autism or disability itself as much as it’s about language deprivation and identity and the denial of minority experiences as genuine.
In a comment on one of the early Facebook threads about this particular series of Twitter posts, I said to this couple, “You need to read up on what exposure anxiety is, and what its effects are.” (Exposure anxiety isn’t even the central subject of this post, although I do recommend everyone to read about what it is.)
They said that they weren’t interested in anything I had to say. Nothing new. But a couple of other people were, and there was a conversation about what exposure anxiety is and why it matters. One friend said yes, that makes so much sense as to why the kids she teaches are often able to do some things but not others even though they seem closely related. One friend of a friend said “Holy cow, there’s a word for that?? That’s really a thing?!” and started a Facebook discussion herself about having been so glad to find this out.
And it was not very long at all before someone was accusing her in comments of “collecting labels.”
This is a really, really common accusation against people with a diagnosis of some kind. That we’re just “collecting labels,” “collecting diagnoses,” and “identifying too much with a diagnosis,” closely related to “using it as a crutch,” or in contrast to the ideal of someone who “doesn’t let their disability define them!”
But listen, people who make this accusation? People who don’t understand, because you’ve always just felt like a normal person?
You also go through life collecting labels. You also have a whole collection of terminology and shortcuts and vocabulary for thinking about how you work and things affect you.
The difference is, you grow up with a common language for common experiences with the people around you, for the most part. We don’t. We grow up often in a void of knowledge and vocabulary for how stuff works for people like us, and often deliberately deprived of it. (When parents decide to just never tell a kid about their disabilities? That’s what they’re doing.)
We try and try and try to make the language that we have available fit our experiences, trying to meld and forge and hammer language around experiences it wasn’t built for. Or we try to shoehorn our experiences into the language available.
It never, ever quite works, and the cognitive dissonance can tear you to shreds, or leave you feeling unreal in your own life, or like you’re kind of always walking through the world as a ghost.
Or you start making up your own language for things just to have a reference point if only to yourself. (In many instances, I’ve seen it turn out that different autistic people have come up with almost exactly the same language for a certain thing, almost or totally in isolation from each other. Or that even if I didn’t come up with the language, I’ll hear a phrase or piece of terminology and know exactly what it means, the first time I’ve ever heard it, because it describes so well, so intuitively, something that I’ve never been able to.)
I think you don’t actually do less label-collecting than we do, you just get to do it in a way that’s taken for granted as normal, from a much earlier age. I mean, unless you just don’t use descriptive phrases for the things in your life or the experiences you have in common with other people, or what your problems or weaknesses are, that help make sense of those things to you. Do you use any kind of shorthand language to describe your needs usefully to both yourself and others in a way that makes it more likely that you will be able to find some kind of solution or assistance?
That is what gets us told not to “use it as a crutch.”
Your right to learn how to apply language to your experiences is taken for granted, because your experiences are largely taken for granted as real. (The core belief, at the basis of most prejudice about disability, is that it is fake.)
Typically developing kids are widely regarded as having this right. Disabled kids, queer kids, kids who are atypical or exceptional in some other way, are not widely regarded as having this right.
We tend to be much older by the time this starts happening for us in a meaningful way, or by the time the crazy patchwork of scattered fragments of information starts looking like a coherent understanding of why everything is different for us.
Of course we’re thrilled when we start encountering explanations for our experiences that are more accurate, and useful, than stupid, lazy, rude, psycho, freak, immature, dumbass, selfish, stuck-up, incompetent….
Because for as much as some people have a problem with us collecting labels, they don’t seem to have such an issue with giving them to us. It’s almost like their problem isn’t with people having labels, it’s with their own inability to accept that any experience of the world is genuinely different than their own and warrants different methods of coping.
Or that for once they aren’t in control of what other people get called or whether our experiences are taken seriously.
I mean, try picking one thing about yourself, one thing you know intimately from long-term personal acquaintance, either positive or negative or just important, that’s really important to your ability to understand yourself and make sense of how the world works for you. Try imagining that you don’t know any words for that thing, and you never have. And then you find some.
In that moment—spoiler alert—you feel like the richest person on earth. You’re rendered speechless with astonishment, or you want to whoop with the thrill of recognition.
And then someone comes along and goes “Ugh, you’re just collecting labels.”