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.