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

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!

July 9, 2020

Posted in Uncategorized tagged , at 11:59 am by chavisory

Hi everyone! In case you missed it, I have a new post up at the Thinking Person’s Guide to Autism again this week, “When Adaptation Looks Like Laziness,” about some of the ways we may try to adapt to executive functioning or motor planning issues when we don’t necessarily know how to explain what’s really happening. Hope you enjoy!

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.

November 1, 2019

Would you believe your own child? (Autistics Speaking Day 2019)

Posted in Uncategorized tagged , , , at 11:42 am by chavisory

For Autistics Speaking Day this year, I actually have a question for parents.

If you’re the parent of an autistic kid, and you have ever told an autistic adult (or are still in the habit of doing so), “If my child could speak or write like you, I would consider them cured…” or anything along those lines…

What if they could?

What if some form of treatment or therapy, that currently exists or that might yet be developed, works, and your autistic child gains the ability to share their thoughts in speech or writing?

And what if they said to you, “But I’m not cured.”

What if they said “I am working so hard, in ways I don’t even know how to explain to you.”

“I am so tired.”

“This is draining all of my cognitive and internal resources and I don’t know how long I can actually keep it up.”

“Maybe this looks easy to you, but it feels like my brain is swimming in molasses or doing complicated gymnastics to me.”

“Yes, I can talk, but you’re still speaking a foreign language and every time I answer you I’m carrying out a multistep process of translation and back-translation.”

“I was a real person this whole time. I heard every word you said.”

“I’m actually engaging in this act of elaborate fakery which makes me exhausted in order to make you happy because apparently that’s the only way I get to have rights or choices.”

(Or just because it hurts for you to be so unhappy with me all the time.)

“Sometimes being autistic is hard but sometimes it’s wonderful. I don’t need to be changed as much as I need other people to respect that I exist in the world differently.”

Would you believe them?

Or would you say “No, you’re cured! You’re not autistic anymore.”

Or “That’s great for you, but some people are really disabled.”

Or “You must be very high-functioning.”

“But some autistic people can’t communicate at all.”

“Not everyone is like you.”

“What gives you the right to speak for all autistic people?”

Is that what you would say to your child, if they were to gain an ability you say you dearly wish they could, if they were able to illuminate for you some aspect of why things are difficult for them in the ways that they are?

Would you treat them the way you treat other autistic people who’ve committed the sin of being even slightly articulate on the internet, and saying things like “I think we all deserve acceptance, I think our needs deserve respect, I think we all deserve not to have to live in institutions, I don’t regret my life the way it is?”

We often say that the way you treat autistic adults now is how you’re teaching other people to treat your child when they’re older.

You’re also telling your child how you’d treat them if, heaven forbid, they actually accomplished what you say you want.

And if that’s not how you would talk to your kid if they could speak or type, if they could translate their thoughts and wishes and experiences of the world to you…

Then why is that the way you talk to autistic adults you’re so convinced don’t have anything in common with your child now?

A few years ago, Maxfield Sparrow asked, in a post for We Are Like Your Child, “Do you believe in your children?

My question is… Would you even believe your child? If they said the kinds of things you say you wish they could say?

August 16, 2019

Betrayed on Sesame Street

Posted in Uncategorized tagged , , , , at 2:37 pm by chavisory

I wrote this story down intending it to be part of a different post entirely, about a particular set of musical experiences. I didn’t really want to be telling it for this, but here we are.

A few years ago, shortly after Sesame Street came under fire from the autistic community for its participation in Autism Speaks’ annual Light It Up Blue campaign, I was one of many people, invited through various organizations, to give feedback on development of the “See Amazing” web materials, centered on the character of a 4-year-old autistic girl.

I didn’t have any illusions that our feedback would all be incorporated or that the end result would be everything we wanted, but it was a chance worth taking that some of it would be, that we could affect on a really basic level what American children learn about autism.

And what might be some of the earliest representation of themselves that autistic children ever see.

I got very busy, and when the campaign was finally released to the public, amid a flurry of mixed reviews from the autistic and parent communities, I just didn’t have the bandwidth to engage with any of it. But some of the criticism was confusing to me based on the initial materials I’d seen, which had been deeply imperfect, but also far from being anywhere as offensive as many mainstream depictions of autistic children or characters. There were fallacies that I hoped would’ve been corrected; there were places where I hoped the focus or language would be shifted, but for a curriculum set aimed at preschool-aged children, it had had a lot of good potential. Of course different people can have sincerely different reactions to the same thing, but it made me wonder whether the final product had somehow gotten much worse than it had started.

I was too afraid to find out.

Spring of 2017 came and, once again during a week when I just didn’t have spoons to spare, the announcement that Julia would become a real muppet, and not only a web character, and another wave of commentary that I didn’t feel I could usefully engage with until I had my own opinion of the results. But I hadn’t watched any of it. I just didn’t have it in me. Although assertions like “obviously they didn’t talk to autistic adults” made me furious, as I knew that they had. I didn’t know what the impact of our contributions had been, or if it had been disregarded entirely.

Finally one morning I knew it was past time that I caught up with Julia, and clicked on a video, of Abby Cadabby and Julia singing the Sesame Street theme song together. It started with Julia alone with her bunny, humming to herself, before Abby joins her. I assumed I knew how the skit would go. Abby would join in and sing along, Julia would keep humming, and they’d finish the song together, each in her own way. Cute. Mostly harmless.

But then after Abby sang a line, Julia started singing, too, and my jaw hit the floor.

I couldn’t figure out how they’d come up with it; I had never told anyone about this yet. I had never seen this portrayed or described anywhere.

Julia’s echolalia worked just like mine.

And the message wasn’t “See? She can be included too, even though she has autism!” She just was. It was that her echolalia was just like mine, and it was just …okay.

I have seen a lot of autistic characters portrayed in media. I’ve felt genuine kinship with some of them.

And I had never, ever seen that.

And yes, the portrayal of the character and the way her story was told was imperfect in many ways, but that mattered, and it was something I wanted four-year-old autistic kids, and four-year-old non-autistic kids, and their parents and families, to see

That the way we do things can actually just be allowed to be okay.

I went back to the notes that I’d submitted to see if I could figure out if I’d said anything that could have caused this, but I hadn’t really. It was extreme serendipity, or something someone else had suggested, or that the alchemy of all of our input together had made such an extrapolation or leap of understanding possible, I guess.

Research even showed that exposure to the program measurably increased parental feelings of competence, acceptance, and hope for their autistic children’s potential to be included in the their communities.

And it made what happened next all the more a betrayal of our input and good faith.

This week ASAN announced the end of its partnership with Sesame Street and the “See Amazing” program, after the show leadership declined to reverse course from its decision to use Julia to advertise Autism Speaks’ 100 Days kit, notoriously full of stigma against autistic children and poor-quality information.

A friend asked whether any of us are truly surprised by this development, and the answer, I guess, is no, not really. But it still hurts, like so many things that happen to us again and again and again and yet still hurt, every time. Like so many things that you see and hear when you’re an autistic person at all engaged with a popular media that presumes people like you aren’t watching or listening.

But God, there was so much reason to hope this time.

I really think Sesame Street owes the autistic community, and every family for whom Julia’s inclusion had been a positive development, an explanation for this.

May 23, 2018

Posted in Uncategorized tagged , , at 11:42 am by chavisory

Hey everyone!  I’ve got a new post over at TPGA again this week, “Autistic Commonality and the Illusion of ‘Quirky.'”  Check it out!

February 11, 2018

Posted in Uncategorized tagged , , at 11:26 am by chavisory

In case you missed it, I’m over at the Thinking Person’s Guide to Autism this week, talking about misconceptions about the neurodiversity movement!

http://www.thinkingautismguide.com/2018/02/what-neurodiversity-movement-doesand.html

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