Neurodiversity… but not quite.


I’m reading A Mind Apart: Travels in a Neurodiverse World by Susanne Antonetta. I had a gift certificate to a bookstore, and I picked it up because it had “Neurodiverse” on the cover, and because it referenced the Institute for the Study of the Neurologically Typical and It’s a book of musings by a woman diagnosed with bipolar, with one friend who is autistic and another who is plural. It’s supposedly about the value of neurological diversity to the human race. But I keep reading certain passages that are haunting me throughout the rest of the book.

In the introduction she says this:

Many things regarded as pathologies can be terrible, rendering a life as most people would define it — with things like autonomy and connection — impossible. Those lives are not the ones I’m covering here in this book. In many cases, though, things regarded as pathologies come with tremendous abilities, whatever behavior those gifts might come calling in. The Wired reporter notes that Ted Nelson drove like a maniac and wore a belt made of dog collars.

Then later in the introduction she says this:

I want to say at the outset of this book that there exist severe, low-functioning autisms and other cases, like untreatable manic-depressions (a place I’ve been but didn’t remain in permanently), that probably warrant the term tragedy. I do not address myself to those and would not have the hubris to declare anyone’s life livable for them. I write for myself and for those who do find a value, even a rich existence, in their mind ways, modified perhaps by treatment, but resonant still of what they are.

I keep thinking of those things throughout the rest of the book. They do not, as perhaps the author intended, warn me that she intends to be sensitive. They warn me that this is going to be a profoundly ableist book, and that the ableism is not going to be fully challenged. They warn me that this, like much neurodiversity writing, is a neurodiversity of the privileged. The ones who can say “Yes we may be weird, but don’t you need weird people like us even if you don’t need those other weird people?”

The author writes about the hubris of declaring anyone else’s life livable. She does not examine the hubris of starting from the ableist assumption that some lives, by virtue of disability, are not. She also does not examine the hubris of first declaring some people entirely incapable of autonomy and connection, and then judging the value of a person’s life based on her prejudices about what those two things mean. She does not consider what causes her to assume these things, nor does she consider whether or not other attributes might exist that are just as important if not more so. She talks about “a life as most people would define it,” but doesn’t question the way most people define a life.

She never says the word retard, or even its longer form retarded, but I keep reading it (in epithet form) between the lines (perhaps not in the author’s thoughts, but certainly shouting out at times in the pattern of prejudices that is mapped out) and somehow don’t think people who end up so described fit into her version of neurodiversity (unless we’re being described that way “by accident” in which case it’s probably okay, but the entire concept and the values around it are never questioned), which she defines in part at times by “intelligence” (in one part perpetuating the myth that a person needs extra intelligence to be multiple). She does explicitly exclude autistic people defined by others as low-functioning (she does not question that definition, nor is she apparently aware that two of the contributors to ISNT, myself and Shelley, the second being a woman who wrote some of the definitions she quoted, have been defined that way by professionals).

She says that the book is for people who already find a certain value in their lives. She sometimes questions the way the narrow range of people she includes as neurodiverse are taught to devalue themselves, but she does not question the way people labeled retarded, or low-functioning, or severely bipolar, or severely something-else, or tragic, or not having a life as most people would define it, are taught to devalue ourselves.

So as I read through the book, I am constantly aware that what she is describing is not really meant for me. Or for many of the people I care about. She might say that by virtue of saying this, I am not in the categories she means, but I know that to many people I am, and that she sets a default position of devaluation for those of us not in a position to say anything about it. If someone read this book, and passed me in the street, they would not value me any more than they already do, because they certainly would not stop to ask me if I counted among the narrow elite defined as neurodiverse by this book, and if they did I might not be able to answer. The minds of most people who meet me put me in the other category until proven otherwise. Devalued until proven valuable is a horrible way to do things, and this book reinforces that.

But most books that manage to get widely published, and movies that manage to get widely viewed, I have noticed, challenge only one idea at a time. Autism is a World challenges the assumptions that certain autistic people are also “retarded,” but does not challenge a myriad of ableist assumptions that make their way into that movie untouched. Thus people say “This challenges my stereotypes! Wow!” and go on with most of their prejudices intact and the politics of their position unexamined entirely. A Mind Apart only challenges the devaluation of people who are, at this moment, of “almost-normal” status in some people’s eyes, or have certain features that the vast majority of society considers redeeming despite (not because of, or along with) their eccentricities. Both Autism is a World and A Mind Apart view things on primarily an individual or medical level, and when society is brought up in A Mind Apart it’s more often in the sense of biodiversity in an ecosystem than in the sense of a system of power. Viewing these things as individual allows the worst to continue while people get only slightly uncomfortable (soon resolved by adopting whatever line they think absolves them of their discomfort) and only slightly changed.

Part of the individualization process is also to value “emotional honesty” (with the broader sources or the appropriateness of the emotions not always examined too closely) over many other things. Such that if I were to confess assorted forms of self-hatred, it would be okay, but examining the sources of that self-hatred and concluding that the self-hatred is a product of ableism and that all of this affects the way I treat other people, the way I respond to how people treat me, the advantages I and others have and don’t have, how to change all of this, and so forth, would not be as okay (but would be much more interesting and productive). Much of this book reads as “emotionally honest” but skimming the surface of many other issues.

To go further than that, into ableism, into the ways society is set up to put certain people at a disadvantage, into the ways we are indoctrinated from birth into certain ways of viewing people (all of which go all but untouched throughout this book) would challenge too much at once. Would be too powerful. Would be something I’d have loved. But whenever the book approached those too closely, it veered back to the individual, often explicitly marking out the territory it refused to stray into.

So I suppose, a challenge to find and read at least some of the books/articles/websites that I’m about to link to, and apply the concepts to a broader definition of neurodiversity than the most common pop-culture one these days:

First Contact – Charting Inner Space: Thoughts about establishing contact with people who have significant developmental disabilities by Dave Hingsburger (About $5 USD — also try pretty much any of his other books)

When considering making contact with people who have multiple disabilities — those who are considered to be so significantly mentally disabled that they are in a “vegetative” (that’s what it’s called) state — there is a huge obstacle. Prejudice. Yours. Mine. Ours. Against them. The difficulty here is that prejudice will feel like pity. You may be overwhelmed by a sense of hopelessness and then, if you examine the feeling long enough, terror. […] Well, back off. This isn’t about you. […] The temptation is to engage in an incredible waste of time and psychological energy — spending time imagining what it would be like to be you inside them. How egocentric is that?

Critic of the Dawn by Cal Montgomery (web article)

There are people who call my uncle Bruce a threat to public order, people who call my sister Mary a whining opportunist, people who play “divide and rule” by attacking one or another representation of disability and encouraging defenses along — but never across — the traditional fault lines. And the fault lines that divide our community — the distinctions between those whom we treat as blocked by barriers and those whom we treat as innately limited — the very existence of the fault lines troubles me.

Past, Present, and Future by A M Baggs (web article)

Treatment didn’t get me out of an institution — if that were true, I’d never have left one because I don’t have the skills many think people need to do so. Institutions don’t grow up around people because they’re like whatever sort of person I was. People get put in institutions by other people who think that the only way certain people can live is inside of them.

Confessions of a Non-Compliant Patient by Judi Chamberlin (web article)

I wish I could show you the picture that hangs on my office wall, which inspires me every day, a drawing by Tanya Temkin, a wonderful artist and psychiatric survivor activist. In a gloomy and barred room a group of women sit slumped in defeat, dresses in rags, while on the opposite wall their shadows, upright, with raised arms and wild hair and clenched fists, dance the triumphant dance of the spirit that will not die.

When I Woke Up by Rus Cooper-Dowda (web article)

My point is that the medical and legal staff of that world-renown hospital were wrong and didn’t listen and made startling assumptions about the quality of life for the disabled community I had joined.

In their eyes, I only had two options then — full recovery and a lovely hospice death. I did spend time in a hospice against my will fighting to get to my OB-GYN appointments — but that is the stuff of another story. Leave it to say that it was beyond them that most of us — especially the disabled community — live full lives in between physical perfection and death.

Letter to a Baby Who was Thrown from a Bridge by Astra Milberg (web article)

There are two things you need to learn. First, you come from a group of people who have a history of being thrown away. We have been thrown out of families into institutions. We have been thrown out of schools into special classes. We have been thrown out of lives of employment into lives of poverty. And people like you and me, doctors don’t really want us to be here in the first place. But we, people with disabilities, are glad you are here and welcome you to the fight.

And I, a woman with Down Syndrome, want to be the first to give you the second bit of news. Yes, you come from people who have a history of being thrown away, but you also come from a group of people who have learned how to survive.

Mouth Magazine and Ragged Edge Magazine (websites)

I suppose after reading some of those things, it should be obvious that I, at least, believe that the concept of neurodiversity runs much deeper, requires more fundamental changes, and applies to many more varieties of people, than the easiest-to-swallow (for those not excluded by them) versions allow for. I have no wish to watch myself (at any point in my life, whether currently, in the past, or in the future) jettisoned from the ranks of the valuable so that people who are already very close to the valuable can expand the range to include themselves (and maybe their friends) as they are now, but no further. There’s a lot positive in this book, but I am finding that it does not go far enough, does not question enough, does not dig deep enough, or broad enough, for my preferences. And leaves me wondering about where I fit in this vision of the world.

Tags: books neurodiversity autism autismcommunities outsideperceptions disability politics power beauty hierarchies shinyhappyliberals functioninglabels psych

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

8 responses »

  1. Have you ever read the book “Inside Out”? It’s a book written by people who interviewed two “retarded” people about their lives and wrote them down as autobiographies. One of these people, who is apparently mildly delayed, said something to the effect of “we’re not retarded, we’re slow learners. The people in the O ward [severe and profound delays] are retarded, but we’re not.”

  2. Pingback: Sweet Perdition » Blog Archive » Outlander!, or, Whose Neurodiversity is It, Anyway?

  3. I don’t remember some of the earlier stuff you mentioned, about distancing neurodiversity from people consdiered low functioning. I do remember the assertion of higher intelligence being connected with plurality.

    I read this a few months ago, when a friend had it on loan from the library and she let me borrow it. It was a pretty interesting read, and it got me introduced to the perspectives of a plural, when before I had only encountered the clinical descriptions (in 9th grade health class, I even had to do a presentation on it).

    I think ultimately it was the author’s way of trying to “step on safe ground”, so to speak. It seems to be a much “safer” position for people to say, “Well, neurodiversity is fine for high-functioning people, but it doesn’t mean anything for those more SERIOUSLY disabled.”

    Unfortunately, this is all too common, in the autistic community and without. People often, in arguing for their own self, will make concessions of the rights of other people without examining the issues for their prejudices. Sometimes just it is politically easier. More often, it is just easier to reconcile with their own preconceptions if they don’t have to examine themselves.

  4. Yeah, I wondered about the “plurality as neurodiversity” thing also. I’ve said before that I do think it *might* have something to do with brain wiring, but there really haven’t been any studies either way because “MPD/DID” has such a bad rap in academic circles right now, and I definitely do not believe that “all plurals are geniuses” or anything like that. (Like anyone agrees on what genius actually means anyway– and honestly, most of the groups I’ve met don’t fit the social stereotype of a genius, at all.) I get really tired of “we’re better smarter more creative etc” in the community, particularly when people coming at it from a survivor standpoint start pulling out the whole “we survived because we were more smart and creative than people who didn’t” and are totally unable to see what kind of social advantages might have been working in their favor and helping them to survive. I guess it’s another case of “I could never have been one of the unlucky ones” rationalizations after the fact.

    But… I guess I also view choice, when it comes to plurality, as being similar to how I view choice when it comes to sexuality. Right now, for me personally (Lilac), the term “lesbian” could be applied to me in the sense of someone who would only ever consider having a romantic/sexual relationship with another woman, but I don’t identify with it in the sense of someone who knew when they were two years old that they were only attracted to girls and would only ever be attracted to girls and would never have even thought about a relationship with a man, etc etc. I take people’s word for it if they say it was that way for them, but it wasn’t for me, it just happens that it works out this way for me now (partly because none of my experiences with men were good), and I don’t think there’s anything wrong with that.

    I think part of the reason I find the “you can only be a REAL one if you’ve known it your whole life and could never have been any other way” view worrisome is because of the implication that it (it being same-sex relationships, in this case) are only acceptable because “they can’t help it,” and that if there were any choice involved the matter would be totally different. (And obviously, if I say that I only date women partly because my experiences with men were all bad, in a room full of heterosexual men, at least one of them is going to start trying to convince me that he’s the one who can “convert me back,” etc.) But you can extend it to other things too– that, in general, a whole lot of other deviations from the “norm” are only allowed or considered okay, by some people, if “they can’t help it.” As soon as choice is involved on any level, people start yelling at you about why you choice to not be normal and to make yourself look so bizarre to others and face rejection, etc. (Even if the “choice” involved is a question of “Yes, I could choose to do/not do this thing if I expended a huge amount of energy, and I would be constantly uncomfortable and miserable, but I could technically do it.”)

    In retrospect, I don’t know if being multiple was something totally inevitable for us in any case or something shaped by life circumstances, but I don’t think it makes any difference, whichever one it is. One of the reasons I’ve been kind of dropping back from a lot of communities lately is that I get really tired of people who are always willing to get up on a soapbox and toot their own horn about how great they are and about how their difference, whatever it is, gives them some superiority that “normals” can never have or consciously choose, but that “the really disordered” or “the severely afflicted” just have the disadvantages and none of the advantages and all the medical dogma about what to do with them is correct.

  5. Pingback: Outlander! or, Whose Neurodiversity is it, Anyway? « Sweet Perdition

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