AGM 2016

Speech by William Van Zwanenburg ©


One of the most famous stories by the Science Fiction writer H. G. Wells, “The Country of the Blind”, depicts a society, enclosed in an isolated valley amid forbidding mountains, in which a strange and persistent epidemic has rendered its members blind from birth. Their whole culture is reshaped around this difference. Their notion of human beauty depends on the feel rather than the look of a face; no windows adorn their houses; they work at night when it’s cool and sleep during the day, when it’s hot. A mountain climber named Nunez stumbles upon this community and hopes that he will rule over it: “In the Country of the Blind the One-Eyed Man is King,” he repeats to himself. Yet he comes to find that his ability to see is not an asset but instead, a burden. Their houses are pitch-black inside and he loses fights to local warriors who possess an extraordinary sense of touch and hearing. The blind live with no knowledge of the sense of sight and have no understanding of what it means to see. They consider Nunez’s eyes to be diseased and mock his love for a beautiful woman whose face feels unattractive to them. They enslave him because of his apparently subhuman disability. But when they propose to remove his eyes in order to make him “normal,” he realizes once again the beauty of the mountains, the snow, the trees, the lines in the rocks, and the brightness of the sky — and he climbs a mountain, attempting to escape.

Wells’ unsettling story addresses how we understand neurological differences that run deep into both the mind and the brain. What one person thinks of as his heightened ability, another thinks of as a disability.

Today, some activists both explore and celebrate cognitive differences under the rubric of neurodiversity and it’s a term that is central to this talk. The term encompasses those with Autism, Attention Deficit Hyperactivity Disorder depression, dyslexia, and several other neurological phenomena affecting both the mind and the brain.

The proponents of neurodiversity argue that far from amounting to a mental or physical impairment as the terms “disability” or “disorder” imply, there are in fact many positive aspects to having brains which function differently. It is these positive aspects which serve to nullify the “disabled” label. They therefore argue that we should see these differences simply as variations rather than as disorders. Why, they ask, should that which ultimately that makes them, them need to be classified as a disability or require fixing? Such claims do of course force us to examine what it exactly it means to be disabled.

When it comes to understanding human neurological diversity, the dominant paradigm in the world is that which I refer to as the “pathology paradigm.” It’s my belief that both the long-term well-being as well as the empowerment of Autistics, hinges upon our ability to bring about a paradigm shift – a shift away from the pathology paradigm to what advocates describe as the “neurodiversity paradigm.” Such a shift must happen internally, within the consciousness of individuals, but must also be propagated within the cultures and societies in which we live. It’s a desire to convince of this that is the motivation for preparing this talk.

So what do all these fancy terms mean? What are these “paradigms” of which I speak, and what does it mean to make a “shift” from one paradigm to another? This talk is an attempt to explain this, in plain simple language that I hope will make these concepts easily accessible.

Most of us know vaguely what a paradigm is because marketing people either over use it or misuse it. A new paradigm in wireless technology! A new breakthrough car design. Ultimately a new paradigm in sales hyperbole. However this isn’t what it means.

A paradigm isn’t just an idea or method. Rather, it’s a set of fundamental assumptions or principles, a mindset or frame of reference that shapes how one both thinks about, and talks about, a given subject. A paradigm dictates the ways in which one interprets information and determines what sort of questions one asks about a given topic. A paradigm then is the lens through which one views reality.

Perhaps the most well-known example of a paradigm shift comes from the history of astronomy: the shift from the geocentric paradigm which assumed that the Sun and the Planets revolve around the Earth, to the heliocentric paradigm in which The Earth and several other planets revolve around the Sun. At the time this shift began, many generations of astronomers had already recorded extensive observations regarding the movements of planets. But now all their measurements meant something completely different. All this information had to be reinterpreted from an entirely new perspective. It wasn’t just that existing questions had different answers, the questions themselves were different. Questions like: “What is the path of Mercury’s orbit around The Earth?” went from appearing important to being outright nonsense, while other questions that had never previously been asked because they would have seemed like nonsense under the old paradigm, suddenly became meaningful.

That’s a true paradigm shift: a shift in our fundamental assumptions; a radical shift in perspective that requires us to redefine our terms, recalibrate our language, rephrase our questions, reinterpret our data, and completely rethink our basic concepts and approaches.

A paradigm can be reduced down to just a few general principles or assumptions. The pathology paradigm reduces to just two:

(1) There exists one, and only one, “right,” “normal,” or “healthy” way for both human brains and minds to function; and

(2) If your particular way of thinking and behaving, differs substantially from this standard of “normal,” then there is something wrong with you. By definition, you’re abnormal, defective, impacted upon, or worse still, “disabled”.

The psychiatric establishment that classifies Autism as a “disorder”; the “Autism Charity” that describes it as a “global health crisis”; Autism researchers who keep coming up with new theories of “causation”; scientifically illiterate wingnuts who believe that Autism is resultant from some form of “poisoning”; anyone who speaks of Autism using medical terminology such as “symptom,” “treatment,” or “epidemic”; the mother who thinks that the best way to help her Autistic child is to subject it to Behaviourist “interventions” intended to train it to act like a “normal” child; the “inspiring” Autistic celebrity who advises other Autistics that the secret to success is to try harder to conform to the social demands of non-Autistics. All of these groups and individuals operate within the pathology paradigm, regardless of their intentions or how much they might disagree with one another on various points.

Here’s how I’d articulate the fundamental principles of the neurodiversity paradigm:

Neurodiversity – the natural diversity of human brains and minds – is a normal, healthy, and valuable form of human diversity.

There is no one specific “normal” or “right” style of human brain or mind, any more than there is one “normal”, “right” or “correct” ethnicity, gender, or culture.

Neurodiversity is the idea that neurological differences like autism are the result of natural variations in the human genome. It’s a viewpoint that is not universally accepted, though it is increasingly supported by science. We are realizing that autism, dyslexia, ADHD and other similar phenomena emerge through a combination of genetic predisposition and environmental interaction; they are not the result of disease or injury which terms like “disorder” or “condition” necessarily imply. In other words, no one type of mind or brain is “right” or “wrong.”

In 1979, the American poet Audre Lorde delivered a speech entitled: “The Master’s Tools Will Never Dismantle the Master’s House.” In it, Lorde, a Black Lesbian from a working-class immigrant family, castigated her almost entirely white and affluent audience for remaining rooted in, and continuing to propagate, the fundamental dynamics of the paradigm she felt continued to oppress her; specifically, their hierarchy, exclusion, racism, classism, homophobia, their obliviousness to privilege, and their failure to embrace diversity.

What does it mean,” she asked, “when the tools of a racist paradigm are used to examine the fruits of that same paradigm? It means that only the narrowest boundaries of change are possible and permissible. For the master’s tools will never dismantle the master’s house. They allow us to temporarily beat him at his own game, but they will never enable us to bring about genuine change.” To work within a system and to play by its rules, inevitably reinforces that system, whether or not that’s what you intend.

Lorde’s warning applies equally well, I believe, to the Autistic Community and our fight for empowerment, recognition, respect and acceptance. The assumption that there is something inherently wrong with us is disempowering and that assumption is intrinsic to the pathology paradigm. So the “tools” of the pathology paradigm (by which I mean the strategies, goals, ways of speaking, or ways of thinking) that buy into the pathology paradigm’s assumptions, will never empower us in the long run. We must throw away the master’s tools and employ different ones.

The concept of a “normal brain”, or a “normal person”, has no more objective scientific validity – and serves no better purpose – than the concept of a “master race.” Of all the master’s tools – i.e., the dynamics, language, and conceptual frameworks that create and maintain social inequities – I submit that the most sinister is the concept of “normal people.” The members of such a group are simply thought of as “healthy people,” or just “people” – with the implication that those who aren’t members of that group represent deviations from that which is normal and natural, rather than being equally natural, healthy and legitimate manifestations of human diversity.

This is why an essential early step in establishing the neurodiversity paradigm was the coining of the term neurotypical. Neurotypical is to autistic as straight is to gay. The existence of the word makes it possible to have conversations about neurotypical privilege which hitherto were impossible. It’s a word that allows us to talk about members of the dominant neurological group without implicitly or inadvertently reinforcing that group’s privileged position.

Its establishment is an essential piece of the new vocabulary that’s beginning to emerge, that needs to change if we are to free ourselves of the pathology paradigm and if we are to successfully propagate the neurodiversity paradigm instead in our own thinking and in the sphere of public discourse.

Another useful word is neurominority. Autistic, dyslexic, and bipolar people are all examples of neurominorities but there are several others. I’d like to see it come into more widespread usage because there’s a need for it. There are a lot of topics in the discourse on neurodiversity that are much easier to discuss when one has a good, non-judgmental, non-pathologizing word for referring to the various groups of people who aren’t neurotypical.

Words are tools and as we recognize that the master’s tools will never dismantle the master’s house, we are creating our own tools, which can help us not only to dismantle said house, but to build a new house in which we can live better, more empowered and fulfilling lives.

When we recognize that the struggles of neurominorities mirrors the struggles of other sorts of minority groups, we recognize this self-pathologizing talk as a manifestation of a problem that has historically plagued members of many minority groups. Specifically, a phenomenon called internalized oppression.

Once we’ve thrown away the concept of “normal,” neurotypicals are just members of a majority – not intrinsically healthier or more “right” than the rest of us – just more common. And Autistics are a minority group, no more “disabled” than anyone else. When we realize that “normal” is just one of the master’s tools and toss it out the window, the idea of Autism is a “disorder” or “disability” goes out the window right along with it. Disordered compared to what state of order exactly?

Without the imaginary reference point of “normal,” labels such as “high-functioning autism” and “low-functioning autism” are revealed to be absurd fictions. “High-functioning” or “low-functioning” compared to what exactly? Who gets to decide what the proper level functionality of any individual human should be?

If you reject the fundamental premises of the pathology paradigm, and instead, accept the neurodiversity one, then it turns out that you don’t have a disorder or are disabled after all. And it turns out that maybe you function exactly as you ought to function; that you just happen to live in a society that isn’t yet sufficiently enlightened so as fully integrate people who function like you. Equally, that maybe the troubles in your life that you experience are not the result of any inherent deficit. Maybe your true potential is unknown and yours to explore. Maybe you are, in fact, a thing of beauty.

As an autistic adult, I find the idea of natural variation to be considerably more appealing than the alternative – the suggestion that I am faulty, broken and in need of repair. I didn’t learn about my own autism until I reached my late 30s. During all of those pre-diagnosis years, I assumed my struggles stemmed from some inherent deficiency.  Asserting that I am simply different – not defective – is a much healthier position to take. Realizing the idea is supported by science is even better.

To many neurodiversity proponents, talk of finding a “cure” feels like an attack on their very being – a desire to invalidate their very existence.  They (as do I) detest those words for the same reason other groups detest talk of “curing homosexuality” or “passing for white,” and they perceive the accommodation of neurological differences as a similarly charged civil rights issue. There is no question that neurominority people have brought many great things to human society. If those achievements were indeed facilitated by their neurology, it logically follows that any attempt to “cure” future perceived disability by eliminating our differences would be tremendously harmful to humanity. It’s tantamount to genetic fascism and has all the characteristics of the underlying ethos of the eugenics movement.

If our neurological diversity is part of our makeup that we can no more change or affect than a left-hand person can cease being left-handed, or a gay person can cease being gay, we believe it’s our right to be accepted and supported “as-is.” We should not be compelled to behave like, or made into something else – especially against our will – to fit some imagined societal ideal. The difference – and this is a big sticking point for neurodiversity opponents – is that racial differences or differences in sexual orientation do not functionally disable a person whereas neurological differences can, even if such disablements are in fact, nothing more than a social construct. Previous campaigns to accept diversity were simpler in comparison. In them, all we had to change were beliefs and attitudes. With the neurodiversity paradigm shift we must change beliefs at the same time that we find ways to solve significant functioning problems.

This task is complicated by the fact that neurological difference is invisible. It’s hard for the general public to embrace an unseen thing that produces unexpected behaviour with no obvious explanation beyond that of “acting badly.” Some people think neurodiversity acceptance means accepting what are otherwise socially unacceptable behaviours in the name of embracing difference. I disagree. All of us need to act correctly (ethically, morally, humanely) towards one another.

In considering the question of how to deal with the diversity of neurological conditions, we would do well to remember H. G. Wells’ story, where “normal” is a fluid term. Nunez thinks of the blind as abnormal, but so do they of him. That each human being is biologically unique is in fact the norm. Eliminating this rich diversity in the professed interests of ameliorating or preventing suffering would, in the end, diminish our humanity. It would make us less visibly like the Country of The Blind, but at the same time more like them in their prejudice. Rather than working to create another set of public labels, the real value of the neurodiversity movement may be in helping us to recognize that we each face challenges and opportunities — and that a decent society is one in which we are each able to strive to make the best of what we are given.