January 15, 2020
Institutionalization and Daryl Hannah and autistic people like me
[This post is slightly expanded from a recent Facebook comment]
A friend posted this article about Daryl Hannah this week, which is a few years old, and which I enjoyed very much despite the totally melodramatic and unnecessarily stigmatizing headline (which she probably had no role in choosing).
And though the fact of Hannah’s autism, and the fact that autistic people can and do succeed at counter-intuitive, high-visibility careers like acting, is old news by now (and Sense8 has sadly reached the end of its run), I think it’s especially worth drawing attention to one aspect of the article, because it bears on an issue that is still very much under discussion in the autism community.
In particular, the childhood history Hannah relates really highlights how the gulf between autistic people whose parents and professionals say need to be in institutions because of the severity of their autism, and those of us who they say are “mildly affected” and just can’t understand, is just not what they assume it is.
Daryl Hannah is someone who could well have been institutionalized, had her parents believed the doctors who recommended it. And then anything that happened to her there, any deterioration of her condition, any given set of skills or knowledge she failed to acquire as a result of institutionalization, would have been used as evidence that she belonged there and not as evidence of injury by institutionalization. She’s probably right that she’d still be there today.
And today, she’d be being held up as an example of someone whose condition was so severe, whose daily living skills and ability to exercise autonomy was so lacking, that it was clearly understandable to institutionalize her, rather than someone who’s so outrageously successful her autism obviously can’t be that serious. Or that even if she is, she shouldn’t talk about it or use that label for herself because it takes attention away from autistic people with more intensive support needs.
When really the only difference is in the kind of chances she was given.
I know I’ve quoted my high school math teacher before, who said “A lot of times kids will ask me, ‘When am I going to use this?’ And the answer is, ‘Probably never.’ But if you don’t learn it, you definitely won’t.”
Someone never genuinely given a chance to live and grow in their own community, never will.
Daryl Hannah narrowly avoided institutionalization. And for all that some factions of parents and autism professionals will say that this isn’t really about autistic people like me or Daryl Hannah, for as different as they say I am from autistic people who they insist really do need to live in institutions, frankly, if it could’ve happened to Daryl Hannah, it could’ve happened to me.
I don’t think somebody else’s kid really does belong in an institution because their support needs really are greater than Daryl Hannah’s, or mine. I think they deserve to live in their communities as much as she or I do.
I think the rest of us would be as fortunate to have a chance to know them and have them in our lives as much as we are for the pleasure of having Daryl Hannah’s art in the world instead of having her locked in an institution while we’re told why she really belongs there.
July 17, 2017
Allies and alienation
The last few years, I’ve spent a lot of time baffled and confused about many of the ways that activist communities talk to and about allies.
Until I realized that what “ally” means now…isn’t really what it meant, or what I took it to mean, when I was younger.
Around 10-15 years ago, in the contexts in which I was involved, “ally” had more of a connotation—or at least, I thought it did—of people or communities who were similarly marginalized making common cause, out of recognition that the prejudices against us worked similarly and had similar effects and implications, and that no one was truly free while anyone was not.
When I started having more contact with communities of activists again a few years ago, I was very shocked, for a while, to hear allies consistently spoken of with such disdain because that wasn’t my experience of the concept at all. I don’t know when things changed and “ally” came to mean something rather different.
Finally I started to suspect that this difference in experience as to the concept of allies may underlie a lot of miscommunication and strife, at least in part…
I see things like this, and I think…we may be talking about different things.
Because when one group of people says “don’t alienate allies,” they mean,
Don’t show any anger or resentment that might be difficult or unpalatable to clueless privileged people. Don’t be abrasive. Don’t raise your voice. Be unfailingly non-confrontational at all times. Never tell me I’m wrong.
And people who claim the identity of “ally,” but behave like that, exist. They do.
But when another group of people says “don’t alienate allies,” they mean,
Don’t perpetrate the same forms of mistreatment, psychological abuse, and bigotry against other vulnerable people as both of you have already been injured by. Don’t recycle those very same dynamics into your own communities and belief structures. You can only hurt and alienate people that way who are already hurt and alienated.
I am not an ally*, but yes, I am alienated.
I mean, of course, you shouldn’t be able to alienate allies from their beliefs or support for your cause by not being nice enough because deeply-held beliefs about human rights shouldn’t be based on whether or not an arbitrary group of people is nice enough to you. It should be a matter of right and wrong. If a position on the human rights of a group of people is that easily shaken, it’s not a conviction, it’s just expedient.
So no, you should be able to alienate allies from their positions by not being “nice enough.”
But you can absolutely alienate people from wanting anything to do with you by being addicted to cruelty, by celebrating hatred, by re-enacting highly recognizable patterns of emotional abuse and coercion, by pursuing an agenda of upsetting people for the sheer sake of it, and by an alarming dedication to ends-justify-the-means reasoning.
These are the things that have alienated me from communities that I, at least in theory, belong to. I’ve been alienated by being told that other people know better than me what I think and what I feel and that I need to simply accept that. I’ve been alienated by demands not to use my own critical thinking or judgment or conscience, or to lie about my own life because that would make it more convenient to someone else’s politics. I’ve been alienated by gossip and smear campaigns and hypocrisy. I’ve been alienated by unwillingness to distinguish between missteps and malice and by embrace of the social control tactics of evangelical fundamentalism and outright abuser logic (“the fact that you’re defensive means you’re wrong so just admit it and apologize”).
I’ve been alienated by rules for allies that I can neither follow, nor expect anyone else to, not as an ally but as a human.
If I see women saying they hate men or that men are trash (and garnering social media accolades for it), that doesn’t make me any less dedicated to the equal rights of women. It just makes me profoundly sad. Because I thought we were supposed to be the people who didn’t devalue people for their gender or their bodies. I thought we were the people who didn’t celebrate hatred.
So when I hear you say those things, it doesn’t make me less committed to justice, it just makes me think your values are crap.
These are not issues of niceness to me, but of ethics and integrity and core values.
I don’t actually think I’m a particularly nice person and “niceness” doesn’t mean a whole lot to me. But civility does. Kindness does. Intellectual honesty does. Ethical consistency does. Freedom of conscience and of self-reflection does.
My values are not shaken. But yes, I am alienated.
So I can only imagine how people on the outside, looking at how we treat people and wondering whether they dare wade into engaging seriously with activism or issues of social justice, may feel.
I’m not “worried” about alienating “allies.” I know that the way we treat people has consequences.
I do not believe that the fact of fighting back against oppression, of being angry, of calling injustice what it is, makes us “just as bad” as our oppressors, but I am worried about how we undermine our own supposed values, when our communities turn out to be very, very willing to engage in the exact same modes of abuse and anti-individualism and authoritarian thinking as our oppressors. I think that what we are and are not willing to do matters.
I don’t believe that our rightful anger is hatred, but I see actual hatred being valorized and yes, I worry.
I am not worried about people who only want to be “allies” if it gets them enough brownie points; I am worried about vulnerable people seeking a social justice-oriented community and being told that the price of admission to being a decent person is to accept being treated appallingly.
I worry about who we become when we accept that.
That’s what worries me.
That’s why I’m alienated.
*Yes, of course I believe in working to understand intersectionality and standing against injustice and battling oppression in all its forms, but the designation has acquired too many terms and conditions that I can’t consent to, so I will not use it for myself.
August 16, 2016
Deprivation of privacy and other thoughts
{This post is adapted from comments made elsewhere. Also there’s profanity.}
From this post (Stop Isolating Autistic Adults and Calling it “Community-Based Housing“):
“It is dangerous to reveal private details about disabled people online—in part because it reinforces the narratives that we are burdens, people no one would miss if we just disappeared, or it tells people that it’s understandable to abuse and kill us because we are such burdens, and let’s all sympathize about what burdens our kids are.”
I want to draw attention to this quote because…in the neurodiversity and self-advocacy communities, we often draw parallels between the kind of thinking that excuses revealing personal or humiliating details about a child’s life online, or other various ways that disabled kids are treated differently from typically-developing kids, and the kind of thinking that ultimately excuses more overt abuse, dehumanization, and murder.
I think that those parallels are often true and justified.
But persistently violating someone’s privacy over time also just establishes a standard (to both that person and everyone around them) that it’s acceptable to persistently violate their privacy over time.
And that might seem like a small thing, comparatively speaking, but it is actually a harm in its own right, to set a precedent that a certain person, or that a certain kind of person, isn’t entitled to the same privacy and respect that other people are.
Teaching someone that they have no right to basic privacy is its own harm.
I think, having been at this a few years, that a lot of parents feel that drawing parallels between very common blogging practices, and (relatively) rare occurrences of murder or outrageous physical abuse, is hyperbolic and unhelpful and tars most frustrated, lonely, exhausted parents who are really trying the best they know how with too broadly incriminating a brush.
In some ways, I think that they are right. I know that the very vast majority of parent bloggers would never dream of deliberately harming their disabled children, don’t think of them as burdens who they wish would just disappear, and are horrified, not sympathetic, when abuse and murders come to light. No one has to convince me of that.
Not that I don’t think that the relationship between those things, and far more mundane mistreatment and ways of talking about autistic people isn’t real or isn’t dangerous; I think it is.
But often I think that jumping straight to the most rare and extreme consequences predictably inspires defensiveness and dismissal of what feel like ridiculous accusations, because most parents do find them unthinkable. (This isn’t a criticism of the author of this piece. This is a community-wide tendency, which in many cases is justified, and in some cases, I think, is less effective as a first line of argument.)
And what also gets lost is that these seemingly little, daily, constant violations—having physical discomfort or boundaries ignored, or having sensitive information revealed to an audience of strangers without your consent—are themselves a significant harm, even if an unintentional one. They don’t have to lead straight to overt dehumanization and murder in order to be wrong. They teach people subjected to them that they should not be able to expect the same level of consideration and respect as other people do.
Depriving someone of privacy over time—even in seemingly mundane and insignificant ways—erodes their sense of their own right to privacy over time.
That has consequences for the whole rest of a person’s life. That alone should be enough to be objectionable.
There are a couple of things I want to say about the comments on this article as well:
- “I am glad that you are a vocal self-advocate. I applaud your ability to do this. However, there are many who do not have a voice or are unable to convey their feelings and views. The person in the article is one. My daughter is another. And there are many, many others. So, what is your solution to help these individuals seek life opportunities?”
This is not a remotely new question, and yet people still throw this in our faces as if we’ve never heard it or thought of it before. As if we’ve never considered this, never encountered people more significantly disabled than ourselves, or even as if some of our fellow self-advocates aren’t, in fact, the very people they’re talking about, who have high support needs and can’t easily make their needs and desires understood.
As if we’re suddenly going to go “Oh, wow, we never thought of that! You’re right, some of us have more intensive needs than others, and that just undermines our whole entire belief system about the civil rights of disabled people.”
As if the self-advocacy and neurodiversity movements haven’t been answering this criticism for decades.
Parents, please, please take a little bit of time and read about the history of the disability rights movements. This discussion is not new, and some of the people who have been having it for many years have won some really important advances for people like your children. Read Jenny Morris’s Pride Against Prejudice, read about the history of isolated, planned farming communities and the Olmstead decision. Read Cal Montgomery’s “Critic of the Dawn,” and the discussions that happened here (the whole series, and all the comments, are well worth it) and here (again, all the comments). There are a lot of instances in which we don’t want the same things, but there are a lot where we very much do, but I see people who seem to just not know the history of these issues trying to reinvent the wheel.
I have been following this very same debate since about 2004, but it has been going on for longer than I’ve been alive. Please familiarize yourself with it. You’re wondering how it’s possible that someone like your child could ever live in the community without you? Well, some of the people telling you it’s possible are the ones who have been coming up with solutions and insisting on her right to access them for a very long time.
You’re right, I’m very lucky to have the capabilities I do and relatively few support needs. I know. I’ve also come of age looking up to the activism of people who can’t speak, can’t live on their own, can’t manage their own personal care needs, who have been institutionalized or narrowly avoided institutionalization. We know that such people exist. Our positions about the housing and self-determination rights of disabled people include them. In many cases, were pioneered by them.
None of which means that solutions are easy or magical. But it really is not the case that we never thought to ask the question and it just destroys our whole position.
- “With us parents, it is our lifetime experience with our loved ones that gives us the right to plan their futures for when we are not there to advocate for them.”
If autistic/neurodiversity advocates were the ones saying “Because their disabilities are more severe than ours, your children deserve fewer rights to self-determination than we do. Your children don’t deserve to live in our communities, don’t deserve legal protection from wage and housing discrimination, and you should be forced to make all their decisions for them for the rest of your life…”
Parents would have a shit fit.
That would never, ever fly with you.
But we mostly aren’t the ones saying that. And it goes mostly unchallenged by non-disabled parents when other parents all but say just that in mainstream media coverage of autism and developmental disability.
Why is that?
I’m afraid I already know the answer, but I’m curious. Why is that?
January 9, 2016
We know our history, but that’s not enough.
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.
October 13, 2015
Achieving better autistic representation on stage
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.
June 19, 2015
On collecting labels
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.”
October 14, 2014
“Men suck.”
It was for this statement that I felt I had to unfollow a Facebook friend recently. It wasn’t the only thing that made the absolutely screwball, back-asswards social justice discourse on Facebook unbearable during the week in question, but it was kind of a breaking point with regards to my ability to not say anything about it.
And according to some people, if I were really enlightened about sexism and oppression, or had the right belief system about those things, I’d know I was supposed to take it someway other than at face value, but I’ve never been any good at tests like that, where I fail some ideological standard by taking people seriously for what they say.
And according to certain formats of discourse about feminism and privilege and stuff, it isn’t supposed to bother me. But it does, and this is only part of the reason why.
See, when you say this, I think about the men who have also been betrayed and hurt by our culture, who already get told that they fail as people, or fail as men, or can never be real men. Not the self-described entitled “Nice Guys,” or cat-callers, or murderers. But the truly gentle men. The shy men. The feminine men. The trans men. The men who would never knowingly or avoidably hurt another person or creature. I think about the disabled men and autistic men, men who have suffered rape and domestic violence, men who work to undermine the exact same forms of discrimination and violence that you do, in any way they can, every day that they’re alive.
These men are already told that they suck by the very same system that tells women and people of every other gender how much we suck.
I think about the men who when they were boys were some of the very few people who treated me like a person. They aren’t perfect people, but like some days I made it home from school not hating myself, and some nights I didn’t cry myself to sleep because no one said a nice thing to me that day. The chubby kid who wore the same clothes to school most days whose locker was above mine in 6th grade? The other kids didn’t treat him better than me for being male. The girls in the gym locker room weren’t more careful than he was not to step on my feet or kick me in the head.
I think about the men I work with on a daily basis—the actors, directors, choreographers, assistant stage managers, and technicians. Whose work I depend on to make a living, and who depend on mine, because they’ve made it their life’s work to fill the world with beauty and tell better stories.
I think of every man hamstrung and violated and disregarded by this culture’s stupid, cruel expectations of manhood. Those men are already getting told that they suck a thousand times a day. I think about the men deciding what kind of men they really want to be, and how they could be good ones, in a society that doesn’t show them a lot of good options. I didn’t think “No, you’re right, there aren’t any,” was the lesson we were going for.
I think about the boys I know who are going to grow up to be disabled men of color, and what kind of chances are we going to give them to do that, who are already so vulnerable from almost every other possible angle? What kind of people are we telling them they could grow up to be? When we tell them “Men suck?”
I think about the men whose writing or music or art has healed and sustained me.
And when you declare that “Men suck,” you are talking about all of those men, too.
I think about the girls who may grow up to be men, and what they’re hearing in this, and the boys who may or may not grow up to be men. What are we telling them about what their choices are? You can be a man, or you can be a person who doesn’t suck, but not both.
The culture of masculinity that all of these men are coming from has already declared them worthless and wrong. Are we accepting refugees from that entire way of thinking, or are we just perpetuating it under a different name?
What are you telling a child about whether or not he can grow up to be a person you can love and approve of?
I thought the point was that we don’t do that to people.
I thought we were supposed to be the ones who didn’t attack and devalue people for involuntary factors intrinsic to their personhood. I thought we were the community that didn’t leave people with no feasible way to be an acceptable human being.
If I was wrong, if that’s not the case, somebody let me know. Because I can’t be a part of it.
May 30, 2014
It’s not a sin to be awkward.
I’m was in the office at work with my boss and a coworker, and I do not even remember how the topic of conversation has turned to public schooling vs. homeschooling. But it has. My coworker starts in on an anecdote, and I have a bad, bad feeling about where this is going.
“We had a homeschooled girl in my high school chemistry class. She was like 12. She was just so far ahead.”
(Maybe not. Sharp intake of breath. Slightly too-long pause.)
“But she was so awkward. And it made the whole class awkward, and it was just awkward to have her there.”
And here we are. At the moment in which, prior to this, I had actually thought that my acceptance in this place, to these people, wasn’t based on me passing myself off as the right kind of person instead of the wrong kind.
The awkward kind.
But it was. And I am. She hadn’t realized, in the way that people usually don’t stop to think whether it’s possible that the people they’re about to mock or denigrate are actually the people they’re talking to.
Oops. Fuck.
And I don’t want to start a really nasty fight right then in front of my boss, so I say something moderate and reasonable-sounding about how what really matters is not whether a kid is homeschooled or not, but whether they’ve been isolated or allowed to have outside social opportunities. How some homeschooling families actually just isolate their kids, and that’s wrong, but as long as they’re giving their kids chances to interact with other groups…choir, scouting, church groups, music lessons, art classes…
…instead of “Fuck you very much.”
And I didn’t say what I actually should have, either…in the interest of starting my shift on time and also…not having an awkward argument in my boss’s office.
It’s not a sin to be awkward.
Can we stop talking about it like it is?
A 12-year-old girl hasn’t done anything to you by being awkward, or by taking advantage of her legal right to a free and appropriate public education while awkward.
While we’re at it, can we also stop using “awkward” as a euphemism for incompetent, irritating, immature, overbearing, invasive, inappropriate, or probably autistic but we can’t be seen as scorning someone for being actually disabled so we’re gonna say they’re “awkward” which is obviously just a personal failing that’s fine to use an excuse for their ostracism?
Here’s another newsflash: I know a lot of people who in fact went through 13 years of mainstream public schooling, who are still awkward people. Because it actually isn’t being confined in a cell-block building with a limited number of people, exactly your own age, for over a decade, isolated from your community and adult company, and subjected to sufficient peer pressure to just stop being different, that makes you non-awkward. It’s already possessing a manner of speech, body language, common interests, and gender presentation that’s consistent with those of the vast majority of other people. It’s having a native language of social engagement that is the same as most people around you.
I served my full term in the public school system, I went to the second-largest high school in my state, and I followed that with four years at one of this country’s most regularly top-ranked party schools.
I am still an awkward person. And if you thought I wasn’t, you just haven’t seen me in the right—or the wrong—situation. But I guarantee you it wasn’t lack of ridicule or social pressure to be anything other than what I was that caused this.
It also isn’t being allowed to do your academic work outside of a classroom setting, at a pace that works for you, that makes you awkward, because plenty of non-awkward people do that.
I’d really like people to consider, before the next time they scorn a kid for being awkward, or homeschooling or unconventional schooling for making kids awkward, that they are likely committing a fundamental chicken/egg fallacy.
A homeschooled kid probably isn’t awkward because they were homeschooled.
They are probably homeschooled because they are awkward.
Because they have probably already been forced out of the school system by bullying and abuse or discrimination, or because the school couldn’t or wouldn’t meet their academic needs.
(Being academically precocious: also not a sin.)
I mean, mandatory, universal public school attendance wasn’t even a widespread thing in this country until the early-mid 20th century. Were we really just a nation of incredibly awkward people until the 1920’s or so?
Even if it really were homeschooling that caused awkwardness, I would so much rather a child of mine be awkward than a whole lot of other things that are nowhere near as socially stigmatized as awkwardness: Mean, bigoted, superficial, callous, snide and scornful towards people different from or more vulnerable than themselves.
I’ll take awkwardness any day.
June 26, 2013
It’s my birthday today. I’m 31. Yikes.
And I had just finished breakfast this morning, in the kitchen of a friend I’m visiting, when we got the news, just after 10:00 AM, of the Supreme Court decision overturning the Defense of Marriage Act, and shortly thereafter, Proposition 8.
I remember being a teenager, sitting at my own kitchen table, at breakfast time, in the house where I grew up, reading the news about DOMA’s passage. I wasn’t all that attentive to what went on in politics or the world at that time, I didn’t know things I do now about my own identity, and I didn’t think I knew any gay, trans, or queer people. I still believed some things about sexuality and morality then that I don’t anymore and am not particularly proud of to look back on.
But I remember reading about it in the morning paper and being so sad. Something about it just profoundly didn’t sit right with me. I couldn’t think of another instance within my own lifetime in which a law had been passed for the deliberate and express purpose of depriving a specific group of people of rights or protections. And based on very little except the perception by the majority that they were simply the wrong kind of people, or willfully deviant–a burden which I had always felt, though for different and at the time unnameable reasons.
And no matter what I felt about homosexuality, I couldn’t believe that that was right.
It was part of a long pattern, that I identified with the wrong people in the given narrative.
I honestly didn’t think it would be so soon–though of course it’s been more than long enough for a lot of people who have suffered under the consequences of this law–that I’d get to look back on that day with a bittersweet happiness.
The world does change when people persistently stand up for what is right. We are capable of making the world kinder and fairer.
Remind people of this day, tomorrow, and the day after, and the day after, when they tell you any version of the lie that we can’t make the world safer by standing up for each other, or that it’s better to just keep your head down, fit in, and not speak up for justice or piss off anyone in authority, because the world never changes. It’s people with a vested interest in the world never changing who keep telling that lie.
(Edit: I hit publish on this, and then realized that I hadn’t come up with a title, but when I went back to edit one in, I thought that the date was kind of title enough. DOMA: 1996-2013. RIP.)
May 2, 2013
Dear Emily
I meant to write this even before I knew that today (er, *cough cough* yesterday *cough*) was Blogging Against Disablism Day. Hey, serendipity!
I saw this on Facebook, shared on a friend’s page, a few days ago:
Emily Xxxxx
Hey, my name is Emily. I’m 19 years old and I have high-functioning autism. I was diagnosed when I was 2 1/2, when my parents noticed that I stopped talking and developing normally. I never wanted to be snuggled. Loud noises scared me badly. I would parrot everything my parents said. I didn’t like people in general. I’d have a hard time sleeping at night. I was a very picky eater, and didn’t like things if the textures weren’t right. I also didn’t like it when things would suddenly change. Once I was diagnosed, I was put into speech and occupational therapy right away. My therapists thought that I would never be able to go to a mainstream school, learn how to drive, keep a job, or get married. I proved them wrong. I was put in an IEP program when I went to an autism preschool at 3 years old. I learned how to read when I was 4. I was good at remembering things with details. By the time I turned 5, my teachers ran out of things to teach me that were in their curriculum because I picked it up fast, so they started teaching me things that I would learn in kindergarten.
Now I’m in my freshman year of college,I changed my major this past semester to studying special education, and not social work. I work part-time in a call center for an anesthesia medical billing company as a billing specialist. I stopped being on the IEP program when I was in 9th grade. I have a driver’s license, I graduated high school with a 3.2 GPA, I’m engaged to be married next fall to an amazing guy, who loves me and accepts me for who I am. I still have some OCD tendencies, and I still have some texture issues when it comes to certain foods. For the most part, people can’t even tell that I have autism.
For you parents out there with children on the spectrum, don’t give up on them. Help them reach for their potential. Look for the talents that they have, and help develop them. My parents didn’t give up on me, and I’m forever grateful for them, because I get to live a normal life. I am getting married July 5th.
Thank you,
Emily
Dear Emily,
I saw your post on Facebook, through a friend’s page. (I’ve removed your photo and last name.)
My name’s Emily, too. And, with some notable exceptions, which we’ll get to, I could’ve written large chunks of your story.
You’ve done a lot, and you should be proud. But your note left me worried and uneasy for you more than anything else.
*****
I never developed normally. But I was misdiagnosed, and there were no IEP’s when I was in school anyway. I don’t know if there were special schools in our area, but if there were, from what I’ve heard from friends who were in special ed, nothing leads me to believe that they would’ve been good places. Speech and occupational therapy existed, but it had been decided that I was just shy and stubborn and didn’t want to talk, not that I was in fact having serious language problems. Far from being told that I would never do things like go to school, live by myself, or get a job, it was just assumed that I should be able to do everything that everyone else did, and so no one thought that they needed to teach me anything. I had to just figure it out. It was fly or die. And that much I knew for sure.
I read a lot. Thankfully, my first grade teacher was good at teaching writing, and I loved it. I spent a lot of time outside. I learned to drive. I was in gifted programs throughout school. I graduated from high school with a 3.9 GPA. I was captain of my scholar bowl team, copy editor of my senior yearbook, and editor of the school creative writing magazine. I graduated from college with honors and with two degrees. I learned to stage manage and held office in the college debate society. I worked in a campus biology lab, for the local community theater, and then as a barista for several years. I moved to New York with friends, and I work in theater full time now.
And for most of my childhood and adolescence I was in a desperate race to prove, both to myself and others, that I could do anything that I needed or wanted to do, because I was so (reasonably, as it turns out) terrified of winding up not being allowed to live my own life.
I’m hugely proud of a lot of what I did. But I also did some fairly horrible things to myself, and it took me a long time to realize that the fact that I had to wage that war in the first place was wrong.
Recently I was out with a friend, and she said “Your education sounds like hell.” I had to agree. It was, and no one had ever said something like that before, or told me that yes, it was all real. Most people trivialized it or called me spoiled or oversensitive or assumed that because I was smart, it was all easy for me, not that it was war, day in and day out.
*****
Sudden noise, visual over-stimulation, and unwanted touch still hurt me. I’m still very sensitive to texture in my food and clothing. I still walk on my toes, I have a strange gait and an accent that people can’t place. Frequently my emotions don’t connect to my language abilities very well and so there are things I can’t communicate. I worked really hard at developing speech, organizational, and motor planning abilities, but they can still be overtaxed, and I can’t go around expecting to be able to function in the ways a non-autistic person would take for granted, or to push my boundaries for extended periods of time.
And none of that is a reason I can’t be happy or productive or ambitious. It does require that I honor how I’m actually built and how I’m not.
*****
I’m glad that I had people, who I know and who I’ve never met in person, in large ways and small ones, in words and not in words, deliberately, and not so much so, to tell and show me that it was okay to be autistic. That it isn’t wrong. We’re not wrong, to be this way. That we’re okay. That we’re supposed to be here.
I’m glad for all the writing and information from other autistic people that helped me put it together that autism is not what we can and can’t do. It’s not how we’re defective or inferior. It’s how we’re configured to process information, to feel, perceive, and use language, to learn and grow differently from most people, and there’s nothing wrong about that.
I don’t take pride in the fact that a lot of the time, people can’t tell I’m autistic, because all that means is that most people wrongly equate the condition of autism with prejudices about what we’re not supposed to be able to do, or with bigotries about us being incapable of empathy, love, warmth, or friendship.
These days, most people know that I’m autistic. Partly because I write and talk about it, but partly because both my ability and willingness to expend energy on suppressing physical signals of autism have gone away. I’m glad that I’d already read some of Amanda Baggs’s and Rachel Cohen-Rottenberg’s writing, so that I knew what was happening when it started happening to me and didn’t panic or blame myself. My brain gives me fewer choices now about how I can and cannot abuse it. I had to start letting myself feel what I feel and need what I need again.
And I’m better off. I mean that. I’m healthier. I sleep better. I feel like a whole person again. I feel like a real person, like I fit in the world again. It’s an incomparable experience, to know that you belong in the world exactly the way you are, that no one can take that away from you again.
*****
And the other thing? That whether or not anyone can tell you’re autistic has anything at all to do with what kind of opportunities you have, or what kind of respect or affection you get from other people?
That’s wrong. That’s bigotry by definition. If you would be worse off if other people were able to tell that you’re autistic–regardless of your actual, individual character traits, qualities, abilities, and intelligence–that doesn’t mean there’s something wrong with being autistic; it means there’s something very wrong with how other people see us.
*****
By all means, we should tell parents to look for and nourish their children’s strengths, and believe in their potential. But not giving up on your children doesn’t mean putting a premium on them having the most apparently normal life possible. Normal and good, or worthwhile, or satisfying are not synonyms. My life is hugely different from yours. Other autistic people will have lives that look very different from mine. And that doesn’t mean that they’ve failed. That doesn’t mean that they or their parents did it all wrong. It means that they’re different, and made the best choices possible for themselves, and that fighting their autism or any other aspect of their true natures into the ground was just not on the priority list when compared to learning things, or spending time with a topic of obsession, or just enjoying life for what it is.
What we did–to survive, to grow up, to have our own lives–is not wrong. But a lot of the ways in which we were forced to were.
I think we’re capable of making a world where no one’s success or acceptance depends on how well they manage to look like something they’re not. We all deserve better than that, and so do you.
Chavisory's Notebook 