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

July 11, 2021

July

Posted in Uncategorized tagged , at 6:02 pm by chavisory

[Image is of a pastel-colored evening sky, from rosy orange near the horizon to deep blue higher up, over the surface of a lake and horizon line of dark trees. Fluffy gray clouds are backlit by the sun so they look tinted orange in places.]

Spent some time back home in the Midwest recently, seeing family again and catching up on views like this.

June 13, 2021

Complex Personhood

Posted in Uncategorized tagged at 5:56 pm by chavisory

Currently obsessed with this quote from Ghostly Matters: Haunting and the Sociological Imagination, by Avery F. Gordon.

“It has always baffled me why those most interested in understanding and changing the barbaric domination that characterizes our modernity often–not always–withhold from the very people they are most concerned with the right to complex personhood. Complex personhood is the second dimension of the theoretical statement that life is complicated. Complex personhood means that all people (albeit in specific forms whose specificity is sometimes everything) remember and forget, are beset by contradiction, and recognize and misrecognize themselves and others. Complex personhood means that people suffer graciously and selfishly too, get stuck in the symptoms of their troubles, and also transform themselves. Complex personhood means that those called ‘Other’ are never never that. Complex personhood means that the stories people tell about themselves, about their troubles, about their social worlds, and about their society’s problems are entangled and weave between what is immediately available as a story and what their imaginations are reaching toward. Complex personhood means that people get tired and some are just plain lazy. Complex personhood means that groups of people will act together, that they will vehemently disagree with and sometimes harm each other, and that they will do both at the same time and expect the rest of us to figure it out for ourselves, intervening and withdrawing as the situation requires. Complex personhood means that even those who haunt our dominant institutions and their systems of value are haunted too by things they sometimes have names for and sometimes do not. At the very least, complex personhood is about conferring the respect on others that comes from presuming that life and people’s lives are simultaneously straightforward and full of enormously subtle meaning.”

May 28, 2021

Fiction does affect reality. That’s good.

Posted in Uncategorized tagged , , at 6:09 pm by chavisory

Only in the last couple of years, after a couple of decades of being too busy with work and other things, have I started to reconnect with online fan culture.

And it’s not that I expected everything to have just stayed the same since I was in college. I had entirely missed some major events in internet fandom like Strikethrough and Boldthrough and the subsequent establishment of Archive of Our Own.

I was surprised, however, by the emergence of a faction of fans, who seem to be primarily younger and socially left-leaning, sometimes called the “antis” (short for “anti-shippers”), noted for their opposition to the depiction of certain kinds of romantic or sexual relationships and other problematic elements, especially in fanfiction accessible to minors, based on their conviction that “fiction affects reality.”

It isn’t that this position didn’t exist in the 1990’s, or far earlier, or that I’d never encountered it before. But it primarily existed among the socially conservative political right, who believed that access to certain video games risked turning teenagers into murderers and carjackers, that Marilyn Manson’s music was responsible for the Columbine massacre, and that people my age couldn’t be trusted with the books I was assigned to read for AP English, and attempted to legally restrict the distribution of what they considered indecent media on the internet in draconian (and ultimately unconstitutional) ways.

Its prevalence among young, nominally progressive readers feels new and alarming. (And I’m tempted to connect it to illiberal trends in current left-wing activism more generally, but that might be beyond the scope of this post.)

And it’s not that I don’t believe that fiction has the power to affect reality, and to deeply impact people, but it has started to seem to me that even in our defense of problematic and difficult media, there has been a tendency to refute the notion that fiction affects reality in ways as simplistic as these people claim, without challenging the premise that the primary effects of media on reality are dangerous and bad.

Image description: Tumblr post with the name of original poster blurried reads “People really need to realize that “media can affect real life” doesn’t mean “this character does bad things so people will read that and start doing bad things” and actually means “ideas in fiction especially stereotypes about minority groups can affect how the reader views those groups, an authors implicit prejudices can be passed on to readers”

When we talk about how fiction affects reality, I don’t think we should just be talking about how media’s potential for negative or morally insidious impact on our beliefs is nowhere near as one-dimensional as the antis’ and “fiction affects reality” alarmists would have us believe. I think we also need to be unafraid to talk about how fiction affects reality in complex and subtle ways for the better, and not only in ways that are differently or more subtly bad. And I think we need to talk about mental autonomy and how we are not simply automatons of the media we consume, but have the ability and the right to reflect critically on what we read and watch.

One of the things that fiction enables me to do, for instance, when I see a character I like or identify with in some way making what I’d consider to be immoral choices, is to consider the thought process by which they arrived at those decisions, and how even good qualities in a person can become moral weaknesses, and proactively consider how I might do better or differently when faced with a similar situation.

Fiction teaches that you can empathize with someone as a person but not necessarily condone what they do.

Fiction can ask us to consider the value and validity of lives very different from our own. Fiction can further entrench harmful stereotypes of minorities, but it can also challenge those stereotypes and prejudices in readers.

Fiction can show us admirable characters who we can look to as examples of the kind of people we want to be and the kind of behavior we want to emulate.

Fiction inculcates empathy and identification with others to such an extent that I’ve heard it said before that the rise of the novel as a literary form may’ve contributed to the decline in popularity of public executions as family entertainment.

Fiction can ask us to imagine the ways in which the world could be better, and how we might choose to live differently.

Fiction can warn us of dangerous ideologies and the impact of things like fundamentalism and authoritarianism on people in the real world. There is a reason that authority figures bent on control and repression of others’ freedom of conscience, personal autonomy, sexuality and LGBTQ+ acceptance, for instance, so often attempt to restrict children’s access to literature about oppression and about the experiences of marginalized and persecuted people.

Fiction has the power to tell people that they aren’t alone in the world in whatever they’re going through, and to give people ways to articulate their experiences to others, to themselves, and to seek support, clarity, and greater control over their own lives.

It isn’t just that the power of fiction and media isn’t that bad; it’s that it has the capacity to be a powerful force for good—for compassion, self-knowledge, and freedom. And this isn’t only true of works written to be uplifting, un-problematic, or comforting. I think storytelling like that absolutely has its place, but the best of what literature and media can do for us can be equally true of works that are brutally dark or morally complicated, in which people do and believe and experience terrible things.

When I was a teenager, we broadly opposed those who wanted to take access to art and literature away from us. We defended our abilities to watch and read difficult media. We saw and read a lot of things that we were probably too young for, that depicted horrifying things. I honestly think we’re better off for it.

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!

April 20, 2021

Evening blossoms

Posted in Uncategorized tagged , , at 6:05 pm by chavisory

Dogwood blossoms from my walk in the park yesterday evening.

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 28, 2021

I want to believe

Posted in Uncategorized tagged , , at 1:30 pm by chavisory

[Image is of the brick wall of a pedestrian underpass tunnel, lit by warm sunlight, with a pair of shadows roughly forming an ‘X’ shape.]

On a warm day in the park when the snow had started melting, I caught this serendipitous arrangement of shadows on an afternoon walk in the Ravine.

There are so many things I want to believe these days.

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