March 22, 2022

“When Something Finally Clicks”

Posted in Uncategorized tagged , , , , at 8:09 pm by chavisory

Hi all! This week I reviewed Mickey Rowe’s debut book, Fearlessly Different: An Autistic Actor’s Journey to Broadway’s Biggest Stage for the Thinking Person’s Guide to Autism! You can read it here.

December 15, 2021

Dana Scully and the trauma of unanswerable questions

Posted in Uncategorized tagged , , , , , at 12:32 pm by chavisory

[This post contains major spoilers for season 5 and beyond of The X-Files!]

The inspiration for this post was, of all things, a silly X-Files quiz I was taking at work that inspired a Twitter discussion of a badly written question.

The question in question was “How many children has Dana Scully had?”*

And, well, the tricky thing is that there are a few different possible ways to determine the answer to this question.

Are we counting only the child that she gave birth to by choice? Then the answer is one: William.

Are we counting the children who we actually met as characters in the course of the run of the show? Then the answer is two: William and Emily.

Are we presuming that by now she has had the child we find out she’s pregnant with in the series finale? Then the answer is three. Her known, living children? We’re back to either one or two (William and the as-yet-unnamed baby), depending on the time frame we’re looking at.

But if we really want to count the number of children who might exist or have existed, who might be genetically hers?

We don’t know, and neither does she.

And I don’t think that the quiz writer meant to provoke any such debate or serious consideration of this subject. I don’t think the intent was to write a question requiring this level of interpretation. Honestly it seemed like the whole thing was written by someone who was barely familiar with the show but went through a guidebook or something for material. Because anyone intimately familiar with the story would know that that’s a virtually unanswerable question without specifying some additional conditions or boundaries. You can make some assumptions about what the test is looking for and make an educated guess based on those assumptions. (I went with “how many did we meet as characters within the broadcast run of the show,” and got counted right.)

But I think it’s actually significant to some of the central tragedy of the show and its depiction of ongoing trauma—one of those things being told around the edges without ever actually being articulated or drawing our attention directly to it—that we don’t really know. That there are some incredibly basic questions about her own life that Dana Scully cannot answer.

Like where she was for three months of her life. And how many children she has.

“The answers are there,” she says in the pilot episode. “You just have to know where to look.”

But she doesn’t. In regard to a couple of issues of central to her life, she doesn’t really know where to look (or might not want to), and there may not be an answer. (We learn in “Emily” that the Syndicate might not have been keeping astonishingly good track of the children it created in the course of the hybridization experiments. Mulder and Frohike manage to trace a handful of birth records, but it seems like a lot of these children were just kind of abandoned to the social services system.) Even after all this time, there aren’t any straightforward answers, not just to some of the biggest questions in her life—but to some of even the barest facts.

And the thing is that that exacts a toll on you. It takes a toll on your ability to function in the world, to not be able to fill out things like forms or surveys or screening questionnaires. It takes a toll on your ability to form normal relationships when you can’t answer basic or casual questions in straightforward ways. To in effect always be lying by omission, either to yourself or someone else.

Even if the underlying story isn’t inherently traumatic, which Scully’s is. Even if the answers do exist and you do know what they are, they just don’t translate into checkboxes, forms, applications, or casual conversation. When they are none of the available answers to the multiple choice questions. When normal, innocent inquiries force you to lie, evade, or say “Where do I even begin.” When this is a constant fact of your life.

Scully has to lie in some way, shape or form, to virtually every possible question about her children. The two she didn’t get to raise for differently terrible reasons. The unknown names or even number of who knows how many others.

It’s interesting to me that we see at least a couple of instances in which Mulder has to give an evasive answer to a question that should be easy but isn’t.

“Do you have a significant other?”
“Um, not in the widely understood definition of that term.”

“Do you have kids, Agent Mulder?”
“Uh, well, I have son, who’s… he’s grown, though.”

But I don’t think we ever really see Scully have to navigate such a conversation, although she must. (We do see a couple in which she just doesn’t answer an accusation that she doesn’t know what it means to be a mother, or to be abducted.)

It’s in and of itself a form of trauma we see perpetuated on both Mulder and Scully into the revival, that after everything they’ve been through, who can they even talk to about it? (Besides each other, and that seems to carry its own share of problems.)

And I know we love to pillory the writers for leaving Scully with so few female friends or close colleagues by the end of the show that we didn’t even know a single one of the women at her baby shower. But really? I have no doubt that this plays a role in the seemingly inexorable departure of pretty much every female acquaintance from Scully’s life, even aside from the ones we see die. The writers didn’t miss the mark all that badly at the end of the day. It is hard to maintain intimacy or equal footing in relationships with people who you have little ability to share everyday details of your life with because they just have no possible frame of reference.

It sucks. When the facts of your life don’t fit into the way the world works for anyone else. When even trying to explain is exhausting and only makes you a constant object of ridicule or fascination or just incomprehension.

I’ve been talking a little bit recently about illegibility in the lives of autistic people—how so often even well-meaning researchers and professionals don’t succeed at asking questions in a way that lets us give true or useful answers, because so few people really know what our lives look like. I can’t even tell you how many surveys or web forms I’ve just had to stop and give up on because of a question to which I had no possible true answer but also couldn’t skip or go around. About the need to allow for multiple answers and complicated answers and answers that don’t fall into any category you might have anticipated needing to identify, especially in the realms of gender and sexuality, relationships, living arrangement, and employment. I’ve had four meetings with my ACA navigator this year alone, largely for help in constructing the elaborate web of half-truths that will let me exchange data about my life for affordable health insurance, because the state of New York doesn’t know how to ask questions about those things that would let me just tell them the truth.

To say nothing of the things that I mostly just don’t tell people.

And it takes such a toll, to never be able to say true things about your life. Not just in terms of, say, getting healthcare providers or tax professionals or social services or educational institutions to understand what you need, but in your ability to feel known, feel counted, feel like what’s happened to you does count.

That you can be accounted for.

*Interestingly, when I went back to the quiz to make sure I’d remembered the wording right, the question had been changed to a more answerable version: “How many children does Dana Scully know she’s had?” Which is still tragic in its implications, but more possible to come up with a straight answer to. So it’s possible that more people than a handful of fans on Twitter said something…

December 11, 2021

Beacon Broadside’s Top Ten!

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

Hi all! I’m working on getting a couple of real posts up pretty soon, but in the meantime, I was recently thrilled to be notified that my column, “Dear Parents: ‘Autistic’ Isn’t a Bad Word” was one of Beacon Press’s top ten blog posts in the Beacon Broadside this year!

If you missed it the first time around, you can find a link to the original post as well as to the Beacon Broadside’s other nine top posts for the year here!

September 7, 2021

Interview with author Elena Taylor!

Posted in Uncategorized tagged , , , , at 12:44 am by chavisory

I was so happy to be able to do this interview recently with my old friend and favorite mystery author Elena Taylor for her own blog, along with my Sincerely, Your Autistic Child co-editors Sharon and Morénike and our contributor Lei Wiley-Mydske! We all talk a bit about disability acceptance, finding places we felt accepted in the world, and what inspired the chapters we wrote for the anthology.

And if you’re into mystery, Elena writes both the Eddie Shoes and Sheriff Bet Rivers series of mysteries! I very strongly recommend both. Back at the beginning of the pandemic, All We Buried kept me up many nights promising myself I would finish just one more chapter….

No, just one more chapter….

Really, just one more….

July 26, 2021

Neurodiversity is not a euphemism

Posted in Uncategorized tagged , , , at 12:21 am by chavisory

The Big Think earlier this month disappointingly published a piece in which philosophy instructor Jonny Thomson, wondering whether the term neurodiversity does more harm than good, states, “The notion of neurodiversity, mainly developed by those working in the autism advocacy movement, is said to be preferable to ‘disability’ or words with a similarly negative connotation.”

This is something I don’t want to spend a great deal of time, attention, or words on, because as I said in the tweet thread that brought this article to my attention, a virtually countless number of rebuttals have been written at this point, addressing various misconceptions and misrepresentations of what neurodiversity is and means, some of which are reproduced once again in this column.

And yet I feel like this is a distinct variety of misunderstanding that I have seen pop up somewhat more recently, and particularly in educational contexts, than more usual misconceptions that supporting the ideas of neurodiversity means denying disability in favor of favor of considering autism and other neurodevelopmental conditions as “merely a difference,” namely,

That neurodiversity is first and foremost a position on terminology, primarily focused on reducing stigma by replacing words, and that the term “neurodiverse,” applied to individuals, should therefore supplant terms like “autistic,” “disabled,” or the names of other specific learning disabilities in the interest of people with them being treated as normal. Essentially, that “neurodiversity” is a euphemism, employed to eliminate the need to discuss neurological variance in terms of disability.

Thomson is correct insofar as this is a position that exists, and that it’s intensely problematic for some of the reasons he lists, including that it risks denying the reality of disability, and the ability of disabled kids to have their real challenges identified or supported appropriately.

It’s just not actually what neurodiversity means, and it’s not a position coming from within the neurodiversity movement, Thomson’s characterization of which is almost entirely alien to my experience of the advocacy movement in which I’ve been personally and intensely involved for over a decade at this point.

As far as I can tell, it’s coming from education professionals with little to no first-hand contact or involvement with the neurodiversity movement themselves or familiarity with its major figures or writing, who may have had a superficial level of training, but lack a genuine understanding of the concepts of neurodiversity or its history.

You see a similar dynamic at play when it comes to the seemingly eternal debate over person-first vs. identity-first language. Autistic and disabled people, researchers, and journalists on social media are, even still, frequently lectured about how the correct terminology is “people with autism.” Confronted with the fact that, no, their information is out of date, the autistic community overwhelmingly prefers to be called “autistic,” that this has been established in research and surveys multiple times, and that some research has even suggested that person-first language is more stigmatizing rather than less, almost invariably they will say that they were taught this in teacher training or grad school, etc.

And I know they were. I know.

The problem is that, as far as I can discern, they were taught this by people who were taught this by people who haven’t had significant contact with real-world communities of disabled adults in 30-40 years, and the feelings on the subject of many of our communities have changed over that time.

I remember once being told by someone who’d worked as a volunteer with a disability advocacy organization, after she attempted to correct my language use, that understanding of person-first language as correct was only about three years old.

I had to tell her that actually, the backlash to it was over 20 years old.

Being told repeatedly that we’re wrong about what we call ourselves by those not familiar with our communities is obnoxious. I believe the potential bad consequences of the propagation of this particular misunderstanding of the neurodiversity movement are worse, which is the only reason at this point I’m even bothering to rebut this piece. But, for future reference:

1. The ND movement does not advocate denying disability, not using the word “disabled,” or supplanting the concept of disability. (The neurodiversity movement is related to but not synonymous with the social model of disability, and not everyone who subscribes to the former has the same beliefs regarding the latter. I myself do not subscribe to a pure social model of disability.)

If you are interested in what the neurodiversity movement does mean, and are not familiar with at least some of the work of Mel Baggs, Laura Tisoncik, Cal Montgomery, Emma Zurcher-Long, Amy Sequenzia, Hari Srinivasan or D.J. Savarese, I urge you to become so.

And this has been expounded on at great length, in many, many blog posts, articles, anthologies, films, biographies, and even scholarly works at this point, but the neurodiversity movement by and large understands itself as an outgrowth of the disability rights and self-advocacy movements. Pioneers and widely respected writers and activists aligned with the movement were and are people who identify as disabled, many of whom have multiple disabilities, intellectual disabilities, very significant support needs, who are non-speaking, and who have been institutionalized.

2. Neurodiversity does not ask us not to identify, diagnose, understand, or provide appropriate supports and sometimes treatment for specific disabilities. It says we are all just as valuable, just as human, just as much a natural part of human society and human diversity as non-disabled people are. It says we all deserve acceptance, accommodation, and support no matter what our disabilities are. That neither autism nor any other neurodevelopmental condition makes us less than fully human, lesser people than neurotypicals, or less entitled to human rights. It doesn’t say not to name or distinguish between autism, dyslexia, epilepsy, etc., or the ways in which students with those conditions may need or want different varieties of support.

3. Neurodiversity isn’t just a term. Neurodiversity is a political movement having to do with the acceptance and human rights of neurodivergent people. It began with, but is in no way exclusive to, autistic people. Neurodivergence is something of an umbrella term that can refer to a broad range of neurological divergences from the expected norm. (Yes, “even” mental health conditions!) It was never intended to stigmatize or make unspeakable the realities of individual or distinct disabilities. While some people do identify simply as neurodivergent, particularly if they have multiple, similar, overlapping disabilities (it can sometimes be hard to distinguish where autism ends and ADHD begins, for instance, for people who have both), or aren’t sure whether any one diagnostic label best describes their experiences, in communities of neurodivergent adults both online and off, you will find people who openly embrace their labels of autism, ADHD, epilepsy, cerebral palsy, dyslexia, intellectual disability, and more—sharing our experiences, life hacks, strategies, advocacy, and mutual support.

Neurodiversity is not about saying “well, he/she is a bit different” as a placeholder for accurate diagnosis and support. It’s about the acceptability of all of us here on earth, as we are, as part of humanity.

Lastly, I am simply flabbergasted at the apparent lack of any sense of responsibility on the part of people who continue to write pieces like this to understand what they are actually talking about. To find out whether what they think they know, or have heard or read, about a movement like neurodiversity is accurate. Is this the way they would write about a social movement by and for a different group of marginalized people or highly stigmatized population? Maybe it is. I hope it isn’t.

I think disabled people deserve the same respect. That, as the neurodiversity movement holds, we deserve to be treated like real, whole, entire people, who have experiences and viewpoints.

And your misrepresentation has consequences for the cognitively and neurodevelopmentally disabled people who are going to bear most of the burden, most of the energy costs, of attempting to rebut you and mitigate the impact of the misrepresentation you’ve once again lent credence to. And again, I wouldn’t bother, but I think this actually has consequences: that educators believe embracing neurodiversity, embracing acceptance and respect of neurodivergent students, means denying disability or hiding from kids knowledge about their own disabilities. Or that someone is denied access to the ideas of neurodiversity, and to the history of the disability rights and self-advocacy movements, because a parent or educator buys into this pallid imitation of what it means.

All disabilities are differences. Some differences are also disabilities. I don’t understand why this is being treated as a serious or interesting question anymore by reputable publications. Organizations broadly aligned with the precepts of the neurodiversity movement include ASAN, AWN, and the Meyers-Rosa Foundation (which publishes the Thinking Person’s Guide to Autism); any of them would likely be able to connect anyone looking for comment or information with interviewees who have significant involvement or history in the neurodiversity movement.

July 24, 2021

Posted in Uncategorized tagged , , , at 12:22 am by chavisory

“Many people, again lay and professional alike, believe that all people with autism are by definition incapable of communicating, that they do not experience emotions, and that they cannot care about other people or the world around them. My experience, both personally and with others like me, is that in many cases quite the opposite is true. A significant number of autistic people who care deeply about all manner of things, and are profoundly emotional about them, share these capabilities in the privacy of their journals, diaries, and poetry. they do not show them to the world, which is too intense and often too destructive or, worse, dismissive. They do not show them to professionals, whose beliefs about the abilities of autistic people and the power they wield over their clients sometimes make them too frightening to challenge. They do not even show them to one another. And so a vast resource of knowledge about the diversity and beauty of autism rests on countless pages, like layers of archaeology, covered with the dust of fear.”

-Dr. Dawn Prince-Hughes, Songs of the Gorilla Nation

May 5, 2021

“Coming of Age” interview

Posted in Uncategorized tagged , , , at 3:08 pm by chavisory

“For me, anyway, the irony is that a lot of the strengths of autism have to be spent on navigating or compensating for the ways in which our society is still very hostile toward autistic people. And I think a lot about the kinds of things we might be able to create or accomplish if we all had the support that we need or weren’t required to expend a lot of our energy and cognitive bandwidth having to look out for ourselves in ways that non-autistic and non-disabled people don’t, if we didn’t have to leverage our strengths so hard just to survive.”

Photo credit: Charlie Stern

I had a great time doing this interview with with Beacon Press editorial intern Evangelyn Beltran, which is out in the Beacon Broadside this week! In addition to discussing autistic identity, I talk about growing up undiagnosed in the 1980’s, and stage managing while autistic.

It’s the third part of a series, “Coming of Age and Living Authentically on the Autism Spectrum,” with my co-editors Sharon daVanport and Morénike Giwa Onaiwu! Sharon’s interview is here and Morénike’s is here!

April 26, 2021

Dear Parents: On the importance of community language for autistic people

Posted in Uncategorized tagged , , , , at 2:31 am by chavisory

I keep forgetting to post this here, but in connection with the publication of Sincerely, Your Autistic Child, I have an op-ed published in the Beacon Broadside about the importance to kids and families of having access to language to talk about autistic identity and our disability communities.

“There’s nothing shameful about being autistic. Nothing about knowing and understanding our linguistic history detracts from your child’s individuality or personhood. And there’s nothing trivial or strange about having discussions about autistic identity.”

You can read the rest of “Dear Parents: ‘Autistic’ Isn’t a Bad Word” here!

March 29, 2021

Sincerely, Your Autistic Child

Posted in Uncategorized tagged , , , at 7:07 pm by chavisory

Well, I’ve got a happy announcement about how I’ve been spending my time this pandemic, in addition to doing a little bit of hiking, and harassing our building management into fixing our apartment, while I wait for my industry to get back on its feet…

A few years ago, the organization I volunteered for, AWN, self-published our first anthology, What Every Autistic Girl Wishes Her Parents Knew, of seventeen essays by autistic people writing directly to parents about what we wanted them to know as people who had been autistic girls, particularly because at the time, so little information for parents from other autism organizations had much to say about the unique and specific experiences and needs of autistic girls.

Since that time, our name has changed to the Autistic Women & Nonbinary Network, and our mission and goals have expanded to more fully include people of all gender minorities and not just women and girls, and then last spring we learned that Beacon Press had chosen that book for republication. And so over the last eight months, my co-editors Sharon and Morénike and I have been hard at work with our team at Beacon on giving the book an expansion and update, including a new Letter from the Editors, chapters by six new contributors, new cover design, and perhaps most noticeably, a new title! We’re so happy about how it’s turned out, and that our little book will once again be available, just in time for Autism Acceptance Month this year, this time as Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance, and Identity.

Pre-orders are open now, and it will be available everywhere including Bookshop.org, Barnes & Noble, Amazon, or from the Beacon Press website on March 31! We hope you’ll check it out or share it with the family of an autistic kid in your life!

February 10, 2021

Dear Performing Arts Community: We need to talk about Autism Speaks

Posted in Uncategorized tagged , , , , at 1:02 pm by chavisory

Today I am proud to have a guest editorial up at OnStage Blog, about the bizarre phenomenon of support for Autism Speaks within the entertainment industry, why it needs to end, and its relationship to the catastrophe of Sia’s Music.

You can read it here!

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