Acceptance of Diversity within Neurodiversity (?)
Neurodiversity. The better part of a year since I first heard the word, and I still can’t tell you what it means. It’s not for lack of trying: I’ve been reading posts by people who label themselves as part of the movement; I’ve read opinions by those from outside trying to define or critique the movement; I’ve put plenty of my own time into trying to figure out an internally-consistent definition of it too.
In one breath, it speaks to an open-minded attitude and acceptance of the various lives we choose to live (particularly of the value of different lives lived by disabled people). But in the next breath it excludes and invalidates any divergent opinions from the very people it purports to represent. For example, if an autistic individual should choose to speak out about the objective hardships of their condition and how they would prefer to live without autism, their opinions are likely to be attacked, ridiculed or dismissed as distorted, by the very people arguing that diversity is a good thing.
But of course, not just any diversity; their diversity. Because neurodiversity is ironically often about seeing the world in one way; their way. It’s very much like those who argue that the top value in this world is tolerance, and then attack people who are intolerant; tolerating anything as long as it’s not intolerance. Letting anyone speak their minds unless their minds speak something different. To place tolerance – or in turn, diversity – as your top value, from which to attack other people, sets you up for a fast road to confusion and eventual contradiction. There are higher values than acceptance for the sake of acceptance.
It needs to be “we want diversity / tolerance / acceptance because…”. Because it leads to happier or fuller lives. Because it allows more personal / economic freedom. Etc. If the diversity being exalted actually ends up in more misery and objectively worse off lives – lives of restricted movement and interactions when the person dearly desires such things – then something has surely gone very wrong.
There is an important further potential contradiction within the movement, that appears overlooked: If you see neurodiversity as a good in itself, then why is it inherently bad for someone to choose – if they indeed have that choice – to seek another neuro-way-of-being? To clarify, if someone with autism, would rather and actively chooses to go to another point on the rich and diverse neuro-diversity of mankind, then why is that something to be attacked? How is choosing to be less autistic by seeking treatment and a cure, worse than choosing to be more autistic, by completely giving in to autistic ways-of-being? The obvious reply is going to be one of authenticity or truth-to-self; that being autistic is a particular way of being that should not be fought but embraced and accepted.
But that presupposes truths that the core of neurodiversity would seem to deny: That human beings can be always neatly pigeon-holed into one category or another. That we’re not all on a spectrum (in the normal usage of the term) of existence where the lines of difference and disability are arbitrary and un-necessary. If it is true that the line between one type of mind and the next is arbitrarily and culturally (though those are not the same thing) defined, then who is to decree that someone can not of their own volition choose to slip towards one end or the other?
Often the neurodiversity movement will not be this intense though; some (not all) accept that there is some defined grouping called “autism” (despite its historically and ever shifting parameters), which means a person is pre-determined to function, and perceive the world, in a particular way; and that denying that instinctual functioning and perception is somehow inauthentic, wrong, or ill-informed. But to take this holier-than-thou line denies the experiences and perceptions of many others who have the same condition; supposedly the same mind-iness. If there can be – is – this division, within a defined population group, then who gets to choose the correct voice? Who speaks the truth over the other’s truth..?
If one wants to speak beyond personal truths, then it seems the answer has to lie in science and objective evidence. If one side is claiming acceptance will remove all obstacles that autistic people face, and the other is claiming acceptance will still leave objective and severe challenges in those same lives, either someone is wrong, or they are both partially right. I personally see partial and co-existing truths here: Acceptance would help a lot, but it will not eradicate the objective problems faced by many autistic people; sometimes life-threatening problems.
However, what is the point of all that discussion, if we can’t pin down neurodiversity? Does it mean acceptance of an individual’s choice to live exactly as they are; autistic or otherwise? Does it means broadening the perspectives and acceptance of others; to see disability and difference as natural variation when it doesn’t objectively hurt anyone? Does it mean accommodation and encouragement of all and any mental diversity? It cannot be all of those things, but depending on who is speaking, it is. So – it would seem – there is diversity within neurodiversity, and some of that diversity explicitly attacks diversity.
You may be noticing that subtle shift, if you didn’t pick up on it earlier; as I move between “diversity” re neuro, and diversity re beliefs and values. It’s not fatal to what I’m saying – it depends as always on what neurodiversity even means – but if it disturbs you and you dig deeper, you’ll find it doesn’t disappear quite so easily as that: You may be tempted to reply, that neurodiversity welcomes neurodiversity, just not diversity of beliefs about neurodiversity; that neurodiversity is valuing and acceptance of neurodiversity. Whereby the “correct” attitude and belief system is supposedly built into the word itself. The word is a value judgment. So the disagreement – the seeming lack of diversity / tolerance / acceptance – is at the level of the value placed on neuro-diversity.
Claiming then, an authority on perception; an access to truth higher than those who don’t place the same value on it. But on what grounds? Science? Science will show you things but not tell you how to value them. It may reveal the slippery slopes between one mental state and the “next,” it may reveal an unrecognised history of a condition, but it will still show you the differences and the existence of the condition; the closeness of L to M does not deny the existence of A and Z. (I have written before about the common folly of thinking penumbras ruin all meaningful categorization.)
Maybe the grounds of cultural and anthropological awareness; difference is treated differently in different societies. But do they still recognise difference? Yes, even if only to show that someone of a certain ability and temperament is better suited to a particular role within the community than another. Is there a way to perhaps stand outside of culture and make an objective statement about what you’ve observed? If you fully appreciate the complexities and deeply developmentally-ingrained ways in which we perceive the world, you’re going to have to be very suspicious of your own claims to then be able to transcend what you’re observing; to think you have the correct way to make sense of the observed variation.
Which is all to say that sooner or later, as you travel the neurodiversity road, you’ll have to admit that you’ve added in a value judgment that claims an objectivity that supposedly gives you the right to drown out and deny the voices of those choosing a different perception of neurodiversity. It is that value judgement – that neurodiversity is itself a good thing, an intrinsically and always good thing, and above other competing values of what is good – that remains a tripping stone even if one chooses to argue that diversity in a broader sense is not at the heart of the movement (and I have already outlined that that’s not self-evidently the case).
So where does this leave us?
Mostly where we started.
Nowhere.
Because without a clear non-self-contradictory definition of neurodiversity, it’s hard to either praise or attack it; to draw conclusions about its value or correctness. Better to openly state one’s belief, than hop on the neurodiversity band-wagon, because that wagon is over-loaded and the wheels look wobbly from where I sit.
I used to think I knew what neurodiversity meant, and I hated it. Then I thought it meant something else and I loved it. Then I thought about it further and wrote a post called “Acceptance of Diversity within Neurodiversity.”
(And if you can appreciate the circuitousness of that link, then you’re starting to get my point.)
Acceptance of Diversity within Neurodiversity (?) first appeared at Autism & Oughtisms, and is republished here by permission.
[image via Flicker/Creative Commons]
related: Autism In The Mirror
related: Cornering Slim Shady in the Round Barn: On “Pinning Down” Neurodiversity
Autism & Oughtisms on 08/12/11 in featured, Language | 4 Comments | Read More
Comments (4)
It’s often the case that controversies arise from different understandings of words. As much as we may strive for precision in our words, the simple fact that individuals have different experiences necessarily means that no two people will ever interpret a word in exactly the same way.
On the subject of becoming more or less autistic, I recommend reading Mark’s article Mountain Goats of the Uncanny Valley. The social pressures to which Mark refers are described in great detail in the personal stories posted at the Autistic Passing Project.
A&O,
You posed some questions I would like to attempt to answer.
It is not inherently bad for someone to choose to seek another neuro-way-of-being, IF they are choosing for the sake of personal preference RATHER THAN choosing to do so to avoid stigma and prejudice that should be eliminated.
For example, I am bad at math. There are psychological and educational reasons for this which provide certain handicaps that exacerbate my lack of proficiency in math, but basically my brain works better with words than it does with numbers. I value words. I would not sacrifice my skill with words for a skill with numbers. But, if I could add the mental component “good at math” to my brain without otherwise changing who I am, I would because I would like to use math skills more effectively. This is morally neutral.
On the other hand, if I were a full-blooded Native American who could not pass for white (in truth, I’m racially mixed, but was raised “white”) and I wanted to change my physical make-up so I could pass for white or so I could be white, in order to avoid the prejudice and disadvantages of being a Native American, rather than devote my efforts to attaining equality-that is not morally neutral. That is giving in to those who think and who act as if “white” is the right way to be.
There’s ambiguity there that’s difficult to pin down. Admitting that some full-grown, emotionally-mature adults may choose to be non-autistic if they could threatens some people who are autistic and who embrace their autism. Their reactions are intolerant; they are also self-defensive. Autistics have so many people telling them that their existence is wrong that having one of their own kind betray them to the other side is threatening on a level that goes beyond the personal choice of that betrayer. But, of course, the language I used is intentionally inflamatory and loaded. Whether they are neurodiversity advocates or not, it seems most of the people who are passionate enough to speak out about anything are also trapped in a dichotomous viewpoint. There are many exceptions, but those exceptions still don’t touch the majority as far as numbers go. This is a societal problem that goes way, way beyond autism-take a close look at politics in this country if you’re unaware of this.
This us/them mentality is not tolerance. It’s not inclusion. It’s not neurodiversity, but there are those who advocate for themselves who cling to neurodiversity (hi-jack the term, if you will) and yet tout the us/them mentality.
BUT…and this is a BIG BUT…their concerns are also valid for two main reasons.
1) The enormous pressure for standardization, and the susceptibility for abuse, creates a situation where fully-grown, emotionally-immature adult autistics crave normalacy from self-hatred. The solution to this isn’t a cure, the solution to this is acceptance and psychological help.
2) The cure that is sought by most organizations (i.e., the cure that may someday be available) is not something to be used on fully-grown, emotionally-mature adults. Most of these organizations that do this research pay little attention to the problems of adult-autistics at all. They’re lost and worthless-it’s too late to “save” them. The cure is one that would be, if these people had their way, forced on vulnerable young children who have no choice. Including, and especially, those who are still in utero. It’s not a cure to benefit the people; it’s a cure to benefit society, to save society from all these unwanted autistics. It’s eugenics. And that’s not morally neutral either: it’s evil.
Intolerance of different opinions is not neurodiversity, but neither is self-hatred or eugenics. There’s middle-ground, but it’s shaky. Few people with enough passion to speak out stand in the middle-in autism as it is in politics and other major issues. Those people who hi-jack an inclusive word, like neurodiversity, and use it to exclude do not invalidate the word-at least, they only do so with complacency from those who would use it for truly inclusive purposes.
I’ve /a/ Asperger’s and /b/ great and hopeful joy at seeing you ask questions (about neurodiversity) that I thought I was the only one to have.
I am not sure, though, that it is wrong to cure vulnerable you g children if we can. We cure children of blindness when we can, don’t we? … without (so far) asking their permission or waiting till they are grown.