September 13, 2022

My letter to my Senators regarding #StopTheShock

Posted in Uncategorized tagged , , , , at 10:45 pm by chavisory

As many of you probably know, the autistic community has been working for many years to oppose the use of an electrical shock device, known as the GED, employed as punishment and behavioral control at the Judge Rotenberg Center, a residential facility for autistic and intellectually/developmentally disabled people.

(It should be noted that the type of electric shock employed at the JRC is not ETC, or electroconvulsive therapy, which has an immensely troubled past but also legitimate and ethical uses, notably for treatment-resistant major depression.)

While the FDA banned the use of the GED device in 2020, the ban was later overturned on appeal. The autistic community is now advocating to #StopTheShock by asking the Senate to pass the Food and Drug Administration Safety and Landmark Advancements Act of 2022, including language as passed by the House of Representatives that would once again ban use these devices on autistic and intellectually disabled students. Below is my letter to my Senators on this issue.

***

Dear Senator Gillibrand/Schumer,

I am an autistic New Yorker, and I’m writing to ask you to vote to pass the FDASLA Act, including the language banning the use of electric skin shocks as behavior modification, as the House has already done. This is a practice the U.N. has found to constitute torture, and I think it is shameful that this kind of mistreatment is still being practiced on autistic and disabled students in this country. There are far more effective and ethical ways of helping autistic people with the most intensive needs.

Thank you so much for your time.

Sincerely,

{My Name}

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.

March 4, 2022

What feeling represented feels like

Posted in Uncategorized tagged , , , , at 1:09 pm by chavisory

I actually wrote this a few years ago, and for a long time I thought it was the bones of something else, before realizing it actually was what it was. I’m posting it between the occasions of this year’s coming release of season 4 of Stranger Things, and the recent death of author Gary Paulsen (1939-2021).

*

One day in 2017 I spend a rainy day off watching Stranger Things, and immediately afterwards start obsessively reading reviews and commentary. And I know by now I shouldn’t feel the wind knocked out of me when I read someone say things like “Sometimes she seems like a real person…at others she’s little more than a plot device,” or even “the ultimate in lazy sexist tropification,” but I still do. It happens every time. If I really, really love and identify with a character, and go looking for what other people have said about her.

Like I feel like I should just be used to the fact, by now, that every time I strongly and viscerally identify with a female character, she will be declared nothing like a real girl, and I can’t help but suspect that has some relationship to the frequency with which, growing up, I was told in effect that I had to be mistaken about what I was experiencing, because that’s not how things really are for people. That real people don’t work like that.

But Eleven disguised, in that ill-fitting dress and blond wig, looks the way I felt every time, when I was her age, that someone made me dress up kind of like their idea of a real girl.

I hated the way I looked like a boy in an uncomfortable girl suit with a tight collar, told to keep my hair out of my face.

She looks the way that felt.

And how everyone blames her for not being able to explain what she knows.

And only really value her for what she can do.

The way no one really thinks about what anything costs her.

The way they expect her to know things she couldn’t possibly, and the way she just says “no” to demands she knows she can’t meet.

*

At some point a popular blog publishes an honor roll of books containing examples of good representation of disabled people. It doesn’t make me want to read any of them.

The protagonists all sound like solutions to math problems, and I just don’t care.

*

Eleven has a back story that no one would believe even if she could tell it.

Treadway Blake can’t say “I’m sorry” in words, only in anonymously mailed sheet music and elaborate secret murder plots.

Amy Pond and Olivia Dunham both know what it feels like to exist in two different whole sets of memories.  I feel myself being re-embodied back into the world I belong to as Peter and Olivia do the same—Peter keeps defiantly being a person in a version of the universe he was erased from, Olivia learning how to live with memories of a whole life she wasn’t supposed to have had.

*

There were two books I had to read in 5th grade for the lunchtime book club. One was called On My Honor, and it was by far the more critically acclaimed, and one was There’s a Boy in the Girls’ Bathroom, and that was the one I loved.

The main character was a boy who was nothing like me in a lot of ways, who was actually more like some of the real-life classmates I found incredibly grating. But he felt like he couldn’t get anything right, and he talked to his stuffed animals.

My mother asked which one I liked more and I told her, and she said “No, really?”  I don’t remember what I said when she tried to make me explain why. Probably “I don’t know.” I had too much alexithymia and not enough abstract language to say something like Bradley behaves in ways other people find immature and aggravating because he feels unheard and alienated by the social expectations of his peers.

“I just did.”

The American Girl dolls and books had become a huge hit around the same time that I had developed an obsession with 19th-century pioneer life. But whenever I got bought any American Girl things, they were Samantha’s.

Kirsten felt shabby and insufficient and alone in her new world, where she struggled to make herself understood or valued in an unfamiliar language.

Samantha was elegant, articulate, polished, at home in her own skin, and seemed to have the world handed to her again and again in a way I found baffling. People listened to her. Adults believed her. She looked more like me, with her dark bangs, but I couldn’t figure out why, otherwise, I was supposed to like her more, why I was supposed to be more like her.

When I first read The Lacuna, I didn’t even like the writing that much right away, but—and I couldn’t put my finger on why at first—Harrison Shepherd felt more like a real person to me than like a character. I actually thought, “I don’t like the writing that much but I like this kid.” I still feel guilty analyzing details of his characterization as if he’s a literary creation; it feels like betraying his privacy. He feels like a person.

And yes, he’s a multiply marginalized person, and yes, that’s significant, but that’s not why.

It’s the way he compares the tactile experiences of mixing plaster and making pastry dough.

“Mrs. Brown,” he says later, “I have an odd impairment.”

*

I’ve been thinking lately about how a lot of the social justice movement often treats people like collections of identities, and not actually like…people. I think those can look like the same thing, but they’re not.

*

I see these lists go around about how to write an autistic character or how to write a disabled character, and I’ve contributed to some, and I’ve been trying to put my finger on what bothers me about them, or where they miss the mark, even when I mostly agree with them.

Almost without exception, they start with “Say their diagnosis.” But we still live in a time when that isn’t the life that a whole lot of us have lived. A lot of our actual lives are going to fail those checklists and I don’t understand why I’m supposed to feel more represented by characters written as if experiences that broadly resemble mine are off-limits, or should be.

I read this list of books being honored for their representation of disabled characters and I can barely make it through some of the synopses.

But near the beginning of Zodiac, I watch Jake Gyllenhaal’s character walk into a conference room of fellow journalists who all act like they can’t hear him speak, and this character wasn’t created to make me feel represented (indeed, he is actually based on a real person), but I have never, ever, ever seen this experience—one of the earliest memories I have, one of the core constants of my whole life—represented on screen from the point of view of the person being targeted by it.

If there is a common thread to my experience of fiction, it’s probably that I fail to identify with the characters I’m supposed to, and do with the ones I’m not.

And sometimes these listicles about how to write an autistic character that I’m supposed to identify with just make my heart sink, because my life doesn’t add up right in this checklist, either.

In a way, it feels like yet another way in which disabled people are held to standards that non-disabled people aren’t in order to be considered good or real.

*

Part of why I think, even with so much guidance that now exists about how to write an autistic character, that I still usually find coded- or accidentally-autistic characters better-written than explicitly-identified ones, is that, when you can’t lean on clinical language or community-approved terminology lists to do your work for you, at all, you have to actually just write the experience. You have to show and not tell. You have to really be in your character’s head, and I’m afraid that a lot of the guidance I see on writing good representation, rather than helping in that regard, is actually just leading writers to believe that they can’t, that they shouldn’t, deeply and viscerally identify with their characters in certain ways if they don’t share a facet of their identity. And, as I’ve said before, I don’t think that prohibition serves either artistry or empathy.

“Write about us, but don’t write our stories.”

Well, I don’t want to read about a character if I’m not reading some facet of their story. What is the point?

*

If I’m thankful in one way for growing up not knowing the word for what I was, it’s that I never really had occasion to ask “What does this have to do with me?” when faced with the stories of people purportedly not like me in fiction or history. Any story might give me some vital clue about how to identify or understand my own experience. I had no basis on which to be picky about who was or wasn’t similar enough to me in some arbitrary way to warrant my attention, especially since a lot of characters with lives that looked like mine didn’t actually make any sense to me. I grew up surrounded by people who looked like me. But nobody was like me.

Attractive and graceful upper-middle class white girls with tight-knit friend groups and lives that added up and adults who were a dependable source of support just didn’t say anything for me. Those weren’t reliable signals.

So there was no real barrier to perceiving something important to me in the stories of Harriet Tubman or Sojourner Truth, or a boy stranded alone in the woods in a plane crash, or an Inuit girl who leaves a home where she’s not welcome to live with a pack of wolves, or the kind and humble daughter of an African king.

I don’t identify with characters because they look like me. I do when they feel like me.

When Jodie Whittaker becomes the 13th Doctor, I read the status of an immensely well-intentioned male friend, who says “Listen guys, for 54 years, we’ve always been able to see ourselves in the Doctor. And now it’s the other half of the population’s turn.”

And don’t get me wrong, I loved the casting choice. I love Jodie Whitaker’s work. I was happy, and I thought it was exciting, and right.

But the other thing is that I’ve never not been able to see myself in the Doctor just because he was a man. (Except, really, he’s a two-hearted humanoid alien masquerading as our preconception of a “man,” but, details.) I’m confused by and then I resent the implication that I never got to see myself in the Doctor when I did.

I agree that it’s ridiculous the way so many men insisted they wouldn’t be able to empathize with a female Doctor. Why is it not absurd to assume that people like me could never have empathized or identified ourselves with a male one?

I love the casting of a woman partly because I think male Whovians should get a chance to have that experience.

But I wasn’t not having it all along.

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.

April 14, 2020

In thanks for the legacy of Mel Baggs

Posted in Uncategorized tagged , , , , at 12:59 pm by chavisory

As much of the autism and disability rights communities have heard by now, writer and activist Mel Baggs passed away suddenly over the weekend, after years of complicated health issues as well as medical neglect and denial of sufficient home and community-based services.

While Mel was multiply disabled and often emphasized that sie felt more solidarity with the developmentally disabled community more broadly than sie did as simply autistic, sie also wrote the very first thing I remember, specifically about autism, that made me see myself. I remember sitting on the floor of my bedroom in my last apartment in Athens, GA and feeling my world kind of turn inside out as I read words that could’ve just been written about me. I was 21. So while it’s not as if I’d known hir all my life, Mel was inherently part of the world as I knew it, in which I knew myself in important ways.

Mel was, in ways, much more intensively disabled and had much higher support needs than mine. Sie could not speak, most of the time. Sie didn’t live independently. Sie had been institutionalized. Sie wrote about times when people looked at hir and assumed that sie could not think, or had the mind of an infant.

And sie wrote in a way that made me see myself in the world more vividly than almost anyone else would for a very long time.

So when people say things like “We aren’t talking about autistic people like you” when they talk about the autistic people they are sure need to be cured, prevented, controlled, institutionalized, or who they assume “just can’t communicate,” think, understand, or learn, Mel is one of the foremost reasons why I know they are wrong. That they are talking about autistic people like me, and that neurodiversity, presumption of competence, disability rights, and human rights, are for all of us. Every single one.

Mel was like me. And I am like Mel. Not in every way, but in important ways.

I didn’t know Mel personally but had the honor once of editing hir work. My mother said “So you felt like you knew her,” but really, it’s more like my entire generation of autistic people felt like we knew ourselves because of hir.

If you’ve never seen Mel’s video “In My Language,” it was truly a groundbreaking piece of media not just about autism, but about the sheer diversity of human thought and language and possibility of communion with the world.

January 28, 2020

Donation request–Autistic People of Color’s Fund

Posted in Uncategorized tagged , , at 2:20 pm by chavisory

Hi all! As you may or may not know, I’m also a social media volunteer for the Autistic Women & Nonbinary Network (AWN Network). One of the community resources we make available is the Fund for Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment (or the Autistic People of Color’s Fund for short). The fund exists to provide direct, individual financial aid to autistic people of color for a variety of needs, due to the disproportionate barriers accessing services and community support often faced by autistic people of color.

In the past week or so, we have received a record number of applications for assistance.

I and many other autistic people have written often about how the financial priorities of the biggest and most visible autism organizations fail to support our actual well-being. If you’re able and would like to contribute in a way that will support the quality of life of autistic people materially and very, very immediately, the link for more information and how to donate is here.

January 15, 2020

Institutionalization and Daryl Hannah and autistic people like me

Posted in Marginalization, Uncategorized tagged , , , , at 6:20 pm by chavisory

[This post is slightly expanded from a recent Facebook comment]

A friend posted this article about Daryl Hannah this week, which is a few years old, and which I enjoyed very much despite the totally melodramatic and unnecessarily stigmatizing headline (which she probably had no role in choosing).

And though the fact of Hannah’s autism, and the fact that autistic people can and do succeed at counter-intuitive, high-visibility careers like acting, is old news by now (and Sense8 has sadly reached the end of its run), I think it’s especially worth drawing attention to one aspect of the article, because it bears on an issue that is still very much under discussion in the autism community.

In particular, the childhood history Hannah relates really highlights how the gulf between autistic people whose parents and professionals say need to be in institutions because of the severity of their autism, and those of us who they say are “mildly affected” and just can’t understand, is just not what they assume it is.

Daryl Hannah is someone who could well have been institutionalized, had her parents believed the doctors who recommended it. And then anything that happened to her there, any deterioration of her condition, any given set of skills or knowledge she failed to acquire as a result of institutionalization, would have been used as evidence that she belonged there and not as evidence of injury by institutionalization. She’s probably right that she’d still be there today.

And today, she’d be being held up as an example of someone whose condition was so severe, whose daily living skills and ability to exercise autonomy was so lacking, that it was clearly understandable to institutionalize her, rather than someone who’s so outrageously successful her autism obviously can’t be that serious. Or that even if she is, she shouldn’t talk about it or use that label for herself because it takes attention away from autistic people with more intensive support needs.

When really the only difference is in the kind of chances she was given.

I know I’ve quoted my high school math teacher before, who said “A lot of times kids will ask me, ‘When am I going to use this?’ And the answer is, ‘Probably never.’ But if you don’t learn it, you definitely won’t.”

Someone never genuinely given a chance to live and grow in their own community, never will.

Daryl Hannah narrowly avoided institutionalization. And for all that some factions of parents and autism professionals will say that this isn’t really about autistic people like me or Daryl Hannah, for as different as they say I am from autistic people who they insist really do need to live in institutions, frankly, if it could’ve happened to Daryl Hannah, it could’ve happened to me.

I don’t think somebody else’s kid really does belong in an institution because their support needs really are greater than Daryl Hannah’s, or mine. I think they deserve to live in their communities as much as she or I do.

I think the rest of us would be as fortunate to have a chance to know them and have them in our lives as much as we are for the pleasure of having Daryl Hannah’s art in the world instead of having her locked in an institution while we’re told why she really belongs there.

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