Reviewed by Rachael Zubal-Ruggieri
Content Warnings: Discussion of murder and violence, use of the R-Word.
Neuroqueer Heresies collects essays, blog posts, and other foundational works by Dr. Nick Walker. As indicated by the subtitle, the book is divided into three parts: “The Neurodiversity Paradigm,” “Autistic Empowerment,” and “Postnormal Possibilities.” Walker has written introductions or prefaces as well as added notes for many chapters or sections. These contextual frameworks and supplementary details indicate when pieces were written, explain how some works have been expanded since earlier versions, and offer other aspects that make the text cohesive as a whole.
Walker admits some of her writing has been both “clunky” and “groundbreaking.” She shares how her essays, as well as other material written by Autistics have “historical purposes” (p. 12). Autistic people have been, and are, documenting their own histories, opinions, and experiences, though not in hindsight and most definitely not necessarily for neurotypicals. Simultaneously, this text could serve as a useful guide and/or primer on the subject of Neurodiversity and Neuroqueering for all audiences.
Walker acknowledges writings on the Neurodiversity paradigm have indeed served as building blocks for the neurodiversity movement. Some writing and ideas have been collaborative, and she acknowledges other Autistic scholars or allies who have come up with similar theories or phrases as she had, during overlapping time frames. I appreciate how she acknowledges such facts, and this practice serves to strengthen the legitimacy of her book.
She also acknowledges that the first essay was written primarily for an Autistic audience to mediate “discourse on autism” for Autistic people. As Walker notes, this content serves as easy to read, neurodiversity 101 material for neurotypical people while also being useful for non-Autistic “Neurominorities” (p. 14) who might “…apply…[her] analysis to the discourses on dyslexia, ADHD, and other pathologized neurocognitive styles” (p. 13).
But what isn’t as clear (or perhaps a good thing, really) is that other portions of the text use primarily scholarly terminology, and therefore do not seem to have been written for all Autistic audiences. While it may have been prudent to have included some content for academic purposes, the third half of the book offers concepts and language that led me to almost “tune out.” However, Walker periodically intersperses easily understood definitions and examples within these sections, as well.
While Walker provides some adept illustrations of how Autistic and Neuroqueer rights are examples of civil rights, there is no explicit acknowledgement of either the challenges faced by BIPOC Autistics or the importance of the principles of disability justice. I would have expected Walker to at least have mentioned intersectionality in a book about Neuroqueering and Neurodiversity. This doesn’t mean Walker has never written about these subjects, doesn’t support BIPOC Autistic people, or doesn’t ever consider intersectionality—on the contrary. Rather, because there is consistent erasure of and/or a lack of inclusion of BIPOC Autistics (and BIPOC Disabled people, altogether) in many domains, not just within autism discourse, it was particularly surprising to me that Walker, who has elsewhere addressed these erasures, did not do so in this collection of her work.
One of the most important concepts or theories that Walker discusses is the clear distinction between the Neurodiversity paradigm and the pathology paradigm. And I have to admit, at first, I wondered if Walker’s conceptualization of the pathology paradigm might be the same as the medical model of disability. While in some ways I believe the pathology paradigm might be perceived in this way, in other, more important ways, this paradigm is not quite the same as the medical model. What is perhaps more important is that Walker wants the reader—Neurodivergent or not—to understand that a paradigm shift is necessary. In no uncertain terms, more needs to be done than just instituting new ways of thinking—not thinking outside the box, but rather thinking in new boxes.
Walker also coins terminology not often occurring in prominent discussions about autism, such as autistiphobia, which I perceive to be not just a fear of autism, but perhaps a specific kind of ableism. Autistiphobia might even be considered an ableist, neurotypical fragility.
In the section discussing person-first language (PFL),1 Walker pointedly makes clear that many Autistic people have spoken again and again about their objection to the use of PFL. She points out how many nonautistic parents and caregivers are lost in the dangerous fantasy that autism can be erased. As Walker notes, “in the case of many autistiphobic parents, the truth [is] that they’ve been unable to accept and love the person their Autistic child actually is” (p. 111). So, instead, some parents and caregivers end up murdering their Autistic children.
Whereas some parents and caregivers cannot accept their Autistic children for the people they are, other parents and caregivers succeed in breaking out of an autistiphobic fantasy. Nonautistic parents and caregivers can reach out to Autistic adults to find out what to expect or engage in ways to counteract their ableism. Walker is not the only Autistic or Neuroqueer scholar writing about the use of PFL and why it is not acceptable, and she states this sentiment rather plainly: “We’re not asking you to explain yourself, we’re asking you to start doing better.” (p. 112)
The irony of this discussion about PFL is that many people with intellectual disabilities have long objected to labels, such as “retarded,” and, yes, “Autistic,” due to the harm incurred by those classifications. While the self-advocacy movement (which involves primarily intellectually disabled individuals) started long ago, there are quite a few parallels between this movement and the Autistic self-advocacy movement, evident in works such as Walker’s, and the formation of the Autistic Self Advocacy Network (ASAN). Readers should note that self-advocates worked for many years to debunk the “R-Word” and replace it with respect. So perhaps it is the ultimate irony that self-advocates in the IDD realm fight so diligently for PFL whereas Walker proclaims that using PFL is far from respectable and such language is rooted in the pathology paradigm.
So much of the public discourse on autism remains focused on Autistic children, rather than elevating and centering Autistic adults, who can speak for themselves—thank you very much—and, as Walker points out, she continues to write and teach in order to change the rhetoric making “Autistic” such a dirty word. Walker’s essays, among the works of other Autistic activists and scholars, do important work in foregrounding the importance of Autistic identity and culture, and, most of all, promoting and establishing the Neurodiversity paradigm as a model for Autistics and other Neurominorities.
It wasn’t until well into the text where somehow, something just “clicked” for me. I read one particular passage and, at that moment, a connection back to one of the first essays became intricately related to the rest of the book. “Throw[ing] Away the Master’s Tools” (with thanks to Audre Lorde) is more than just an essay or chapter in a book; forming terminology (and fashioning our own “tools”) confirms much of what I’ve learned from reading as well as validates my own philosophy and approaches. Importantly, even though I identify as Neurodivergent, I still have to “check” my own privilege.
Walker’s book helps me to affirm my own ideas and recognize my own neurocognitive processing. I greatly appreciate an instructive text (or, yes, opinion pieces) where I might read a passage and then, within the next sentence, line, or paragraph, my own exact thinking is in front of me; I can read a text such as this one, and I feel I am not alone in calling myself Neurodivergent, but at the same time, still question whether or not I am Neuroqueer or if I Neuroqueer.
As Walker has used “heresies”2 in the title of this significant work, I found that I really had to examine potential alternate meanings of the term as to why this word was chosen. At first, I wondered if perhaps this text could be perceived as a series of manifestos related to the three distinct sections. One of the most recent works in Critical Disability Studies is a text of Disability manifestos, so that had me wondering: how might a manifesto differ from a heresy?
Apparently, there are subtle differences:
Manifestos provide a fulcrum for social change. They can take the form of formal manifestos, great speeches, books, pamphlets and now YouTube videos and even 140 character tweets. They provide a point of leverage around which activists can rally broader political and popular opinion to drive change (Kent, Ellis, Robertson and Garland-Thomson 1)
As a result, I can more fully understand how Walker selected heresies as compared with manifestos. While Walker doesn’t necessarily extrapolate the exact reasoning behind her book’s title, I realize Walker provides much more than mere opinion and/or philosophy, but ideas and theories which certainly might seem, and are, at odds with dominant rhetoric about autism and Neurodiversity. That is precisely Walker’s point in publishing this book, and thus the necessity of its publication.
I also noticed Walker’s periodic use of words prevalent in the Autistic community, and while some are known to be problematic, I cannot say whether or not Walker uses these fraught words intentionally (perhaps paradoxically?) or if their presence is coincidental. Examples include the discussion of Neuroqueering practices as “effectively infinite” (often the infinity symbol is used in Autistic spaces), references to “neuronormative performance” as being on a spectrum (as Walker shares, more often than not, proponents of the pathology paradigm use “on the spectrum” as a euphemism), and the phrasing “the next generation of professionals must be…inoculated against the pathology paradigm” (using the word inoculated brings to mind the number of autistiphobics who claim vaccines cause autism).
Finally, I recognize the writing as ultimately liberating Autistics as well as other Neurominorities from dominant, privileged discourse. As Neurodivergents, Neuroqueers, and/or Autistics, we need to fashion words to define ourselves outside those used to reify the concept of normality. Walker also shares language and theories that simply have not been as readily embraced as Neurodivergent or Neuroqueer, particularly neurocosmopolitanism and Neurominorities. And while neurocosmopolitanism might seem almost aspirational—imagining acceptance and inclusion as a potential reality that might really happen for those who are Neurodivergent or Neuroqueer—it also points out the purpose of the text, and the purpose of Walker’s work in general.
I perceive that in collecting these essays, in this particular order, and at this point in time, Walker is contributing to discourse on Autistic people and Neurodiversity, further cementing the necessity that Autistics and Neuroqueer individuals need to not only share their stories, but do their own theorizing, conduct their own research, criticize ableist cultural practices, and confirm that identities are never, ever static, but rather malleable, fluid, and subject to frequent review, from the inside out. Walker can’t say it any better: “Listen to Autistic people, and read what we write” (p. 161).
In Neuroqueer Heresies, Walker makes clear the work yet to be done. Her work is about a lot of things—subversion, disruption, refusing to conform, but also awakening and liberation—finding and freeing “potential Neuroqueer mutant comrades” (p. 220), myself included.
Citation
Kent, M., Ellis, K., Robertson, R., & Garland-Thomson, R. (2021). Introduction: Why manifestos, why now? In Manifestos for the Future of Critical Disability Studies [Interdisciplinary Disability Studies] (pp. 1-8). New York: Routledge.
Notes
- This has also been referred to within the intellectual disability field as People First language.
- Heresy – an opinion profoundly at odds with what is generally accepted (Oxford English Dictionary definition)
Title: Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities
Author: Nick Walker
Publisher: Autonomous Press
Date: 2021
Read Rachael Zubal-Ruggieri’s poetry in this issue of Wordgathering.
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About the Reviewer
Rachael A. Zubal-Ruggieri is the Administrative Assistant of the Office of Interdisciplinary Programs and Outreach at the Burton Blatt Institute. Mother to an Autistic teenage son, Rachael writes and presents about neurodiversity and autism parenting, seeking to debunk and disrupt traditional representations of “the autism mom.” She is a recent graduate of the Human Development & Family Science program at Falk College, with a Disability Studies Minor, at Syracuse University (SU). Her research interests include Creative and Design Thinking, Technical Documentation and Usability, Technology and Disability, and Parent and Family Involvement in Education. Rachael has dedicated her career to improving the lives of people with disabilities, including broad-based support to multiple disability rights initiatives on campus, in the CNY area, and nationally, through many grant-funded projects and opportunities and via long-term relationships with community agencies and programs. Rachael worked for over 30 years at the Center on Human Policy at SU. She is a founding member of the university’s undergraduate disability rights organization, the Disability Student Union (DSU). Rachael’s current activities include her roles as Co-Advisor of the Self-Advocacy Network (formerly Self-Advocates of CNY), and as a Board Member of Disabled in Action of Greater Syracuse, Inc. Rachael is also co-creator (with Diane R. Wiener) of “Cripping” the Comic Con, the first of its kind interdisciplinary and international symposium on disability and popular culture, previously held at SU. At conferences and as a guest lecturer, she has for many years presented on the X-Men comic books, popular culture, and disability rights and identities.
Editor’s Note: As of the Spring 2022 issue, Rachael has been appointed as Wordgathering‘s Assistant Editor! Huzzah!