March 16, 2017

Coping with the world–yeah, we get it.

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

{This post references the comments made here.}

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

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

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

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

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

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

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

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

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

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

With all due respect: No shit, Sherlock.

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

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

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

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

Let me ask you something.

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

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

We didn’t just not think of that.

We didn’t just not notice.

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

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

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

We know.

We notice that everything is harder for us.

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

We notice that you look down on us for this.

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

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

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

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

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

August 16, 2016

Deprivation of privacy and other thoughts

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

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

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

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

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

I think that those parallels are often true and justified.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parents would have a shit fit.

That would never, ever fly with you.

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

Why is that?

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

April 27, 2016

The right to not understand

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

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

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

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

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

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

Or “He’s too young to understand.”

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

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

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

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

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

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

 

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

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

 

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

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

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

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

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

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

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

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

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

Just don’t be disabled?

 

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

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

Why is that?

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

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

March 15, 2016

Love and duty of, and for, creative children

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

I started reading this article (How to Raise a Creative Child. Step One: Back Off) wanting so badly to like what I think it’s trying to say, but just wound up so annoyed at many of the assumptions and implications the author makes in order to say it.

It’s true—you can’t program a child to become creative. You can’t engineer that kind of success. Love is a better teacher than a sense of duty.

But Grant is kind of just imposing this duty on a certain set of kids in a different way—implying strongly that the right outcome for those kids is to become a revolutionary or visionary leader in their fields. I don’t think that’s fair, either.

Grant also seems unfamiliar with some of the realities of being a gifted child. Whether someone suffers from social or emotional problems, or is kept from learning to be original by adult expectation or fear of failure, aren’t the only factors in whether or not they’ll grow up to change the world. There’s more to the equation than that, and not all of it is even wrong.

I’m going to go point by point:

  1. “They learn to read at age 2, play Bach at 4, breeze through calculus at 6, and speak foreign languages fluently by 8.”

This is not the trajectory that probably most genius follows, though. Particularly for twice-exceptional kids, probably including Einstein, who Grant keeps quoting approvingly. This describes a tiny number of child prodigies, and doesn’t include most people who grow up to be accomplished, creative adults…many of whom spoke or read late, have no particular musical or mathematical talent, or were simply unspectacular at school until they found their own groove later on.

Underscoring Grant’s ignorance here, he talks about giftedness, creativity, genius, and prodigy status almost interchangeably throughout the piece. But they’re not the same thing. Giftedness is widely accepted to entail a high capacity for creative problem-solving, but most gifted children are not prodigies. Prodigies are not necessarily geniuses, nor particularly creative, nor geniuses prodigies. Many impressively creative children are never identified as gifted, indeed are often perceived as academically lacking. All of those things can manifest very differently in different children under different circumstances (and historically, many of the ways in which they’ve been identified have been problematic, to say the least, on multiple levels).

And none of them equate to limitless capability. Any ability =/= every ability. This is a common misconception about academically gifted children in particular. The fact of our advanced abilities in one regard is misapplied to argue that we should be able to do anything else we really want to do (or someone else wants us to do).  This is especially obnoxious for twice-exceptional kids, who have to expend a lot of cognitive resources on navigating the world in ways that most people don’t. In some ways, those struggles can spur creative development. In some ways, though, they’re just draining.

Everything’s not just easy for a very talented child.

  1. “Their classmates shudder with envy; their parents rejoice at winning the lottery.”

They often don’t, though. Classmates often demean and ostracize precocious or conspicuously different kids. Their parents often misunderstand and undervalue their talents, struggle to relate to them, and fear not being able to meet their needs. Siblings and teachers resent them. Schools tacitly allow bullying and obstruct opportunities for acceleration. Kids with IEP’s are told they’re not eligible for honors or AP classes.

In a recent case in Canada, two brothers were both admitted to a prestigious arts high school. The boys’ home district didn’t blink at transferring the required funding for the younger brother, but refused to do so for the older brother, because his educational funding stream was disability-related.

How many brilliant kids does this happen to whose families simply don’t have the resources or social networks to fight back like the Wrays could?

Particularly gifted or creative kids just aren’t automatically given the supports they should have; they’re often being actively thwarted.

  1. “But to paraphrase T. S. Eliot, their careers tend to end not with a bang, but with a whimper.”

This is insulting. How are we defining a “whimper” for these purposes?  Why is the most concerning thing about a gifted child’s life the way their career ends, anyway?  Why do you get to declare the outcome of an artist’s career a “whimper” because they didn’t go as far as you wanted them to?

  1. “Consider the nation’s most prestigious award for scientifically gifted high school students, the Westinghouse Talent Search…From its inception in 1942 until 1994, the search recognized more than 2000 precocious teenagers as finalists. But just 1 percent ended up making the National Academy of Sciences, and just eight have won Nobel Prizes.”

Quite frankly, so what? What percentage of anybody makes the National Academy of Sciences? There is one Nobel Prize awarded per year in a tiny handful of fields. That leaves the vast majority of gifted researchers and creators doing necessary, valuable work who will never win a Nobel Prize. That’s not a meaningful benchmark of whether or not they fulfilled their potential as human beings or as scientists or artists.

“For every Lisa Randall who revolutionizes theoretical physics, there are many dozens who fall far short of their potential.”

Why is “revolutionizing theoretical physics” and “falling far short of [your] potential” a meaningful juxtaposition? Those two extremes don’t accurately represent the possibilities available.

Maybe the Westinghouse Search just isn’t a very good predictor of future paradigm-shifting achievement. How does he know that Talent Search finalists who don’t go on to revolutionize a field aren’t in fact fulfilling their potential, but just in ways that are harder to quantify? That don’t win the shiny awards? Maybe their potential just wasn’t what you thought it was.

And anyway, why is anyone particularly obligated to always pursue to the highest possible level the subject they were good at in high school? Does a gifted teenage scientist not have a right to give up something that they find is no longer in line with their own goals or desires?

  1. “The gifted learn to play magnificent Mozart melodies, but rarely compose their own original scores.”

I spend a lot of time trying to explain this in other contexts

Different skills are different skills.

Technical virtuosity is a worthy talent—it just isn’t the same thing as compositional originality. Maybe a technically masterful musician isn’t an innovative composer because they don’t work at it—or because they don’t work that way. Accepting that isn’t a sin. We need original composers, and we need highly skilled musicians to execute and interpret their work. One of those things is not morally superior. That it’s relatively rare for someone to be both is possibly not actually wrong.

We have a common language of music because most musicians aren’t going around reinventing the rules of music. That’s okay. (And meanwhile, a lot of young musicians not identified as especially gifted as toddlers are composing their own original works.)

  1. “They focus their energy on consuming existing scientific knowledge, not producing new insights.”

But you don’t usually produce new insights by focusing your energies on producing new insights, but rather on solving the really unglamorous, day to day, moment to moment problems, and seeing something differently.

I have to tell you here about my favorite piece of paperwork.

It’s a character/scene breakdown. It was the result of a spreadsheet tweak by an unpaid intern PA. It was the third in a series of attempts to satisfy a director who didn’t like either of my prior versions. And he didn’t like that one, either.

But it was simple and brilliant. I would never have come up with it; I have a tendency towards over-thinking. It eliminated an entire layer of translation from the problem. And it has persistently improved the quality of my work in every way, for every show, ever since. It saves time, it saves anxiety, and it saves scheduling mistakes, which saves money; it became almost every piece of organizational paperwork I use while stage managing a whole other multi-media project.

It’s just a rearranged Excel spreadsheet. That’s how unspectacular creative innovation can look. We weren’t sitting there focused on producing new insights; we were trying not to get snapped at by an unhappy director again. And we failed.

But small breakthroughs like this accrue, hourly, daily, in every creative field, into major shifts in thinking over time.

  1. “In adulthood, many prodigies become experts in their fields and leaders in their organizations. Yet ‘only a fraction of gifted children eventually become revolutionary adult creators,’ laments the psychologist Ellen Winner.”

…And what of the people who do become revolutionary adult creators who weren’t identified as particularly gifted in childhood? What of the disabled and outsider artists, some of whom are supported and represented by places like the Creative Growth Art Center, but some of whose work is never identified until after their deaths or ever at all, who spend the majority of their lives assumed to be categorically incapable by everyone around them?

Where’s the lament for that injustice, when we talk about lost creative promise?

A more interesting question might be, what fraction of revolutionary adult creators was overlooked or written off as untalented in childhood? Or told that they shouldn’t pursue what they did? How many Nobel Prize winners weren’t extremely impressive young children, and what does that tell you?

Again, it looks to me more like the frameworks we have for identifying conspicuous childhood ability just aren’t very good at predicting adult achievement.

  1. “Most prodigies never make that leap. They apply their extraordinary abilities by shining in their jobs without making waves.”

But why should “making waves” be a goal unto itself?

I have seen some of the worst efforts at advocacy or activism born from a desire to “make waves” without having a deep understanding of the topics involved. A lot of acquiring that deep understanding, in order to effect sustainable, lasting change in a field, can look like years and years of absorbing existing knowledge and doing unglamorous work without making waves just for the sake of making waves.

Novices absolutely can make important contributions and insights. They also can crash and burn, or do more harm than good, when they don’t know what in the fuck they’re doing or the history of what they’re trying to do. Context matters. Revolution isn’t always the greatest possible good.

And like, we need gifted surgeons. We need brilliant defense attorneys! To become one can take everything that even the most gifted student has to give. Someone who gives their very best to healing their patients or defending their clients isn’t under-performing because they don’t necessarily decide to make overhauling the system their own highest priority. The problems entrenched in the health care and criminal justice systems have thwarted many of the greatest minds that have taken them on for many years.

And again, there are professionals who actually do this kind of advocacy for systemic change. Just because most people don’t doesn’t mean that the people who should be doing it aren’t. But skill at neurosurgery and skill at lobbying or activism are not the same thing. Different skills are different skills. The fact that the health care and criminal justice systems still harbor massive waste and injustice is more evidence of those issues being very big and very entrenched than of isolated child geniuses not reaching their full creative potential.

I also imagine a lot of highly accomplished doctors and lawyers might take issue with the framing that really they could be doing so much more to reform the system if only their youthful sense of originality hadn’t been quashed. That’s a judgment of somebody else’s life that I’d be very wary of making without an intimate familiarity with what they do and why. Maybe they’re dodging their true potential. Maybe they’re making canny decisions about work/life balance. Maybe they’re actually doing the best they can.

*

There is room for both broad and narrow approaches to art, science, and social problems. Neither is more genuinely creative. The nature of the problem matters a lot.

Love is a better teacher than a sense of duty. So what is all this presumed duty of gifted kids to grow up to be as creative as you think we should be? To solve the problems you want us to solve for you? (If you know so much about what needs to be done, why don’t you go do it and stop foisting your existential disappointment on us?)

Maybe a precocious child’s actual true potential is not the same as your prejudice about their true potential, but that doesn’t make it actually inferior.

Parents shouldn’t drive their highly talented children like achievement robots not because it short-circuits the kind of creative development we really want from them, but because it’s objectifying and cruel.

I just don’t think the goal should be making sure more Westinghouse Talent Search finalists go on to win Nobel Prizes, as opposed to making sure that all children are more able to live their fullest, freest lives. I am so much more troubled by the thought of how many kids—whether formally identified as gifted or not, whether conspicuous musical or linguistic prodigies or not—have their promise and talents thwarted by poverty, by broken educational and criminal justice systems, by ableism and endemic racism, than I am by statistics about a relatively tiny number of prodigies who don’t do what some professor of management thinks they should be doing with their adult lives. And those problems are all of our responsibility to contribute to solving, not to put on the shoulders of singular children to fix for us.

We’re not entitled to the accomplishment of any child, and we squander the talents of too many others.

January 20, 2016

When it is who we are

Posted in Uncategorized tagged , , , at 12:25 am by chavisory

There’s a group of assertions that have become common, among a fraction of parents who, superficially at least, believe themselves to be taking an accepting approach towards their child’s autism or disability.

They’re not necessarily looking for a cure. They’re not subjecting their kids to 40 hours per week of repressive therapy. They’re not bemoaning their grief for the non-autistic child they lost or the tragedy that their family’s life has become.

They’re just really insistent that autism not be allowed to be meaningful to who their child is.

“But it’s not who he is. It’s just something he happens to have.”

“It’s just part of who he is; it’s not all of who he is.”

“It’s part of her but it doesn’t define her.”

“Autism isn’t him, it’s something that happened to him.”

Lately it comes to dominate discussions that aren’t even about person-first vs. identity-first language choices, so fearful is the notion that autism might have any sway in who a child is.

And in some ways, I am more frustrated with this variety of denialism than with the way more openly hateful outlooks of curebie parents. In some ways, I think the parents who far more openly hate their children being autistic are being more honest, as deeply unfortunate as I find their position, than the ones hiding fear and disgust behind “There’s nothing wrong with my child as a person; this is only a thing that they have. It’s not really part of them.”

“It’s not who they are.”

Because that would be the worst thing.

What if it is, though?

What if they can’t meet your demands that they cut themselves off from that much of their psyches? What if they can’t or won’t hack themselves up that way?

As long as it’s not actually who you are, isn’t actually de-stigmatizing.

Just as long as you can let us believe that this isn’t really part of you is not actually acceptance.

Just as long as it doesn’t have real consequences for how you have to live your life.
Just as long as it doesn’t affect you in any significant, unavoidable way.
Just as long as it doesn’t mean anything to you, let alone anything good.

Just as long as it’s fundamentally separate from you.

If it kind of sounds like “Love the sinner, hate the sin,” that’s because it kind of feels like it, too.

Being forced to hold something true and essential about you at arm’s length for years and years, being told that you’re not really the person you are, that the real you, the correct you, is someone who doesn’t move through the world the way that you do…that you are not really like this, it’s just something that you have….

(Let me tell you something about trying to do this. The horrible part isn’t that it can’t work; it’s that it can, for some amount of time, anyway. The result isn’t a person who isn’t autistic, it’s a person who feels like a stranger or a ghost in their own life.)

As long as your whole experience of the world—the way language and emotion, music and light, passion and movement, space and time work—isn’t really innately woven into who you are…

It’s a variant, not a repudiation, of who you are is not acceptable. You’re only a person if you aren’t like this.

“But it’s not who he is.”

How would you know? (How good were your parents at reading your mind, at knowing how you truly and deeply felt about yourself as a child? How right were your parents about who you’d grow up to be? How psychic about these things are parents, generally speaking?) Would she tell you? Would she have the words to? What expectation have you given her about how you’ll react if she comes to you and says “Yes, it really is?” Have you exposed him to the diversity of first-person viewpoints that would allow him to know one way or the other? Is he allowed access to autistic people who describe their own experiences in various ways? Different autistic people do have different conceptions of what autism is to them. Most say that it is part of who we are, but some don’t; the point is that we all, individually, have the right to make those judgments about our experiences and internal lives and descriptive preferences. Do your children not have the same right to conceive of who they are or aren’t for themselves?

What if it actually is? What are you going to do then?

October 13, 2015

Achieving better autistic representation on stage

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

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

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

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

I profoundly disagree with this stance for several reasons.

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

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

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

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

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

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

The writing is, usually.

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

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

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

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

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

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

3. It’s ethically dubious at best.

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

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

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

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

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

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

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

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

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

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

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

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

June 19, 2015

On collecting labels

Posted in Marginalization tagged , , , , , at 2:43 pm by chavisory

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.”

March 17, 2015

On being an unexpected kinesthetic learner

Posted in Uncategorized tagged , , , , , , , , at 1:38 pm by chavisory

(Crossposted today at We Are Like Your Child)

I start to rediscover that I’m a kinesthetic learner, and it’s odd. It’s so contrary to everything I’ve ever been told about myself, and it feels so good.

When we started learning about multiple intelligences theories, kids who were described as kinesthetic—as learning most naturally through movement or action—were dancers, naturally talented athletes, the class clowns, physical actors, the kids who could never sit still. Kids who were always in trouble for not being able to stay in their seats, likely to pick up a diagnosis of ADHD somewhere along the way. High-energy, daring, uninhibited, and loud.

And I was very quiet, very still, very inhibited. I was always in trouble in PE for not knowing what in the world I was doing or being totally unable to keep up with the rest of the class. I was badly coordinated and nowhere near fast enough for any team sport. I never placed in any event in Field Day. I failed out of gymnastics.

Kinesthetic learners were generally thought not to do well in school because of their need for activity and movement. I sat quietly in class and got all A’s. I had a photographic memory. Teachers were always scolding, “You can’t expect to only study the night before and do well on this test!” But I could. I got into the gifted class and kept my hands rolled up in my sleeves.

But all the while, I just ached to be taught how to do things. I clawed my skin off from having not enough to do with my hands. And I could feel the terrifying void that existed between the fact that I knew about a lot of things, but I didn’t know how to do almost anything. The scrutiny of other people was literally paralyzing. I resented more than anything as a kid when we’d be told that we were going to learn how to do a really cool thing, but then what we actually got was obviously a fake, dumbed-down version, of making gingerbread houses or uncovering fossils. People told me a lot about how I was never going to make it in the real world, but nobody seemed to want to teach me anything real.

But writing is movement, too, and I was better at that than most people. So is beading. So is loading electrophoresis gels.

As a child, making tuna salad or cutting up fruit for myself, people try to take knives away from me, sure that I’m going to cut myself, but I never do. (They do.) I never fall on steep hills or icy sidewalks when adults are sure I will. I never sprain an ankle toe-walking.

I could feel that if I could know a thing in my body, in my joints, in my bones, in how it behaved in my hands…anything I could make a physical habit out of, was a thing I’d always be able to do, that I could never really lose or forget, the way I’ve forgotten calculus almost entirely from disuse, and chemistry, and how I’ve lost my photographic memory to other cognitive demands. (That one makes me mad.)

I start stealing opportunities to do that. Time without a well-meaning adult hovering over my shoulder was time to steal fire.

We have typing class in 9th grade, and once I start learning, my fingers twitch constantly, ghost-typing out any sequences of overheard words against my thigh. I had no idea what was wrong with me, why I couldn’t stop.

I was in high school, and may’ve been listening to a lecture from my grandfather about the difference between people who work with their minds and people who work with their hands, and thought silently, “If I don’t work with my hands, I’ll go insane.”

My acting teacher tells me to get my hands out of my sleeves. I turn out to be good at acting.

At a new job, I initially panic when I learn that my nightly duties will involve moving pianos by myself. But I quickly get a sense of the individual moods and idiosyncracies of the Hamburg, the New York Steinway, the Fazioli—their resistance and center of gravity. They almost have individual wills, like baby elephants.

I get told at a meetup that I have very loud hands, and it makes me so happy.

I start teaching myself a little ASL to make up for the apocryphal childhood gesture language I was trained out of, that I have no conscious memory of, and it feels like breathing air instead of doing complicated sorcery.

February 9, 2015

We aren’t your scapegoats. End of story.

Posted in Uncategorized tagged , , , at 6:40 pm by chavisory

I am oh so glad to see the anti-vaccination movement finally seeing some serious public blowback, and very, very sorry that it has taken a lot of sick kids to do it.  And alternately thankful at writing like this (Vaccines Don’t Cause Autism, But That’s Not the Point.  Stop Being Ableist.) being all over my Facebook feed, and ambivalent about some of its logic.  (It is still well worth reading.)

IF vaccines caused autism, even in some tiny percentage of vaccinated children, then whether the tradeoffs were worth the risk might be an ethical discussion worth having. (In which I would still give a hell of a lot of weight to “Measles encephalitis will straight up kill you, autism won’t.”)

But it isn’t. Vaccines don’t cause autism, period.

A hypothetical situation: If there were some form of medical treatment that carried a risk of turning me non-autistic, I would be deeply hesitant to take it, whatever the risks of not taking it were. Not because I think being non-autistic is the worst possible fate. The experience of the 90% or so of people I know who are non-autistic suggests to me that being non-autistic is not the worst possible way to go through life.

But that’s not why I wouldn’t want to be non-autistic. It’s because, as the neurodiversity movement has gone to great lengths to attempt to communicate to the neurotypical majority, the patterns of how we innately experience the world on a neurological level are intimately entwined with our identities as people.

I don’t know what about being non-autistic is so compelling to non-autistic people. I don’t know how many of them could even articulate what it is if you asked them, but they seem attached to it, and as someone not sharing that experience, I don’t get to assume that they are wrong to be so.

Likewise, if there were some form of medical treatment that carried the risk of turning a gay kid straight, I think we would rightly express serious ethical concerns about that possibility. Not because being straight is the worst possible thing that could happen to a person. But because, as the gay community has spent decades trying to tell us, sexuality for most people is as intrinsic to identity and their sense of personhood as things like gender, ethnicity, language, or spirituality might be.

Try it: If you’re cis-gender, would you readily embrace some kind of medical intervention that, whatever its positive effects, carried the potential side effect of turning you into a member of another sex or gender? Even if you chose to accept that treatment because not dying was worth it to you, would you do it with no sense of fear or conflict?

Why not?

Because the fact that being autistic or not, a man or a woman, gay or straight, cisgender or transgender, isn’t a bad or wrong thing unto itself is kind of beside the point when we’re talking about altering deep-seated characteristics that are so profoundly tied to our identities.

If vaccination could cause autism, even if we overwhelmingly decided for good reasons that the tradeoff was acceptable, that would be something we’d have a responsibility to know. It’s not because it doesn’t. In fact, a great deal of research has been dedicated to finding out whether vaccination can cause autism, and I’m resentful of that not because autism isn’t something that should be feared (though it isn’t), and not because Andrew Wakefield turned out to be wrong, but because he committed fraud and every variety of ethical malfeasance and objectified autistic people in the process, for personal gain, with no remorse whatsoever. Being wrong and eventually discovering that you’re wrong isn’t a sin, scientifically, but that’s not how we got the myth that vaccines cause autism. It wasn’t just bad study design or misinterpretation of data, it was a knowing act of fraud and selfishness that set both acceptance of autistic people, and public health, back by decades.

***

And don’t get me wrong—I am really appreciative and glad to see so many of my friends, so many writers and bloggers that I respect, going “You know what, I would really rather my child be disabled than dead.  I would really rather have a living autistic child.” Because it’s still commonplace for parents not to feel that way, and it gets kids mistreated and killed.

But the thing is, the two things aren’t connected.  You’re not risking your child becoming autistic by getting them vaccinated, because there is no relationship between the two things.  And I’m honestly a little uneasy about reinforcing the link in people’s minds at all by saying “Of course I’d take the chance of my child becoming autistic to protect them from life-threatening disease,” because you’re not taking that chance.

Vaccinations don’t cause autism.  And autism isn’t a death sentence.  And those facts are unrelated.

And whether autism is a horrible affliction or an expression of human diversity with advantages and disadvantages like any other, has nothing to do with whether it’s okay to make autistic people boogeymen or rhetorical pawns, because the answer is “no” regardless.

Let’s take another example, of something that is generally agreed, including by the people who have it, to be pretty awful, like ALS, Parkinson’s, or Alzheimer’s disease…all of which are also not caused by vaccination. Would it be any less wrong to fearmonger about vaccines by using a popular fear of something that is pretty awful in its own right?

No—the people coping with that condition deserve just as much as autistic people not to be made pawns in an ideological skirmish, to not have their lives and struggles be made the symbols of somebody else’s irrational fears.

Would it make any sense to say, “Vaccines don’t cause Parkinson’s, but anyway, Parkinson’s isn’t the worst thing in the world?”

Because here’s another thing—you can run the risk of being ‘splainy to someone who has less positive feelings about their own condition. Autism isn’t a degenerative and pretty much universally loathed condition like Alzheimer’s or Parkinson’s, but there are autistic people who really hate it. Who attribute a great deal of the pain in their lives to autism, who wish they weren’t, who would take a cure if one were available, who really feel that it is the worst possible thing to happen to them. Usually when I talk to these people, I have to question whether it’s the difficulties of autism itself that makes them feel this way, or years and years of being mistreated for being autistic, which can be a very difficult distinction to make when you have no standard for comparison. But sometimes it is the former and not the latter of those things, and ultimately people have a right to feel the way they do about their own lives. I hope that they come to a better place eventually, but they also have a right to do that on their own time and in whatever way they need to, not by being told by someone who doesn’t know anything of their experience that they should just accept it.

And they still deserve not to be made objects of fear in the wholly irrational campaign against vaccination…because whether a subjective experience of autism is the worst thing in the world or not, is logically, factually disconnected from whether or not vaccines cause it…and they don’t.

Something else that actually happened: A few weeks ago, after the release of a Danish study purporting to establish a link between circumcision before age 5 and development of autism, a Facebook friend of a friend said something along the lines of (I’m paraphrasing) “Obviously it’s totally ridiculous, but if it scares people out of circumcising, I’m all for it.”

Which to me was actually far more offensive on its face than the persistence of fear that vaccines have anything to do with autism.  Because that’s not just an irrational fear; that statement expresses a conviction that it’s okay to choose a group of people and use our existence as a scare tactic for your own ends. That if a group of people is presumed sufficiently voiceless, you can strip them of agency and the right to self-representation and use them to promulgate a falsehood that’s convenient to your own beliefs just because it’s easy.

(I don’t actually have a lot of blame for people who admit to still being afraid even though they rationally know that the connection is unfounded. Certain people and certain organizations have spent a lot of time, money, and effort to make them afraid.)

In this, it doesn’t matter how sympathetic I am to the cause of pushing back against routine, medically-unnecessary procedures on newborns.  It doesn’t matter how good I think that or any other issue is.  We are not your rhetorical props.  We are not your scare tactics.  Our wellbeing and acceptance as full and not defective or broken human beings are not your pawns for whatever your own pet cause is, no matter how good unto itself it might be.

There is one more way in which the anti-vaccination movement puts autistic people at risk that I rarely if ever see mentioned, and it’s this: Vaccination protects autistic children, too, not just non-autistic ones. Non-autistic children are not the ones who need and deserve protection from preventable disease while autistic children are the risk we run to do so. Further, most people at this point know that autism involves communication difficulties by definition, but what is less well-known is that autism often involves particular difficulty in communicating about pain or illness or other things involving body awareness. Also that pain or illness can take a particularly high toll on the communication and coping abilities of autistic kids compared to other kids. Autism is a complicated disability, and one thing that an autistic kid doesn’t need on top of everything else that they are dealing with—is the measles. The anti-vaccination movement treats consequences to autistic lives of preventable, serious illnesses as a non-issue (and the lives of immune-compromised and medically vulnerable people as utterly disposable, but that’s a whole other essay).

I actually find “Vaccines don’t cause autism, period,” to be a perfectly acceptable assertion. If you do feel the need to add an “and furthermore…,” some things to go with could be “Vaccines don’t cause autism, and vaccines also protect autistic people, whose lives count as much as yours,” or “Vaccines don’t cause autism, and autistic people are not appropriate scapegoats for your fears, so stop it.”

September 26, 2014

Signal-boosting post!

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

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

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

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

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

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

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

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

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

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

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