Daily Archives: October 13, 2006

Views from above

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I am sure there is a fancy sociological term for what I am about to describe, but I don’t know it, and I also suspect that such a term could even detract from descriptions of this (at least, coming at this without training in it means that I may not stay totally within the bounds of accepted theory, which can be a good thing). I am not sure, also, why I call this “views from above” except that this is the spatial relationship my mind comes up with when I think about these things. The “above” I am thinking of is not actually superiority, but many of the people engaged in “views from above” certainly think of it as some kind of superiority. And this post is rough and unfinished, I’m just hoping it will spark discussion and hashing-out of this idea.

The “views from above” are not limited to books about autistic people (or even disabled people in general), but most of the books I’m about to describe are at least partially about, or by, autistic people. That’s just because they’re the ones I’m familiar with. Note that these books range from ones that I find useful in some respects, to ones that I utterly detest, but that the “view from above” aspect of them is troubling in every single one of them regardless of my overall opinion.

Independence Bound: A Mother and Her Autistic Son’s Journey to Adulthood, A guide for professionals, families, and those persons who associate with adults having autism. By Jacquelyn Altman Marquette. And Wake Me With the Morning Light by Nicky Mann. Autistic Adults at Bittersweet Farms by Norman S. Giddan and Jane J. Giddan. Transfer Boy: Perspectives on Asperger Syndrome by Ljiljana Vuletic, Michel Ferrari and Teodor Mihail. Confusion Loneliness Depression: Asperger’s Syndrome — A Journey by John and Patricia Brine. Finding You Finding Me: Using Intensive Interaction to get in touch with people whose severe learning disabilities are combined with autistic spectrum disorder by Phoebe Caldwell. Finding Ben: A Mother’s Journey through the Maze of Asperger’s by Barbara LaSalle. An Anthropologist on Mars: Seven Paradoxical Tales by Oliver Sacks. Send in the Idiots by Kamran Nazeer. Autism: Explaining the Enigma by Uta Frith. Count Us In: Growing Up With Down Syndrome by Jason Kingsley and Mitchell Levitz. Retarded Isn’t Stupid, Mom! by Sandra Kaufman.

As you can see (if you’ve read the books), the books I’m referring to take very different attitudes towards disability, some of the books are way better than others, they’re written by professionals, parents, and disabled people, and in general they are varied in a number of qualities. What they have in common is, to greater and lesser extents, that quality that I’m calling “view from above” for lack of a better term.

Here are some excerpts from a conversation in Count Us In. This is between Charles Kingsley and Mitchell Levitz. Charles Kingsley is Jason Kingsley’s father. Jason Kingsley and Mitchell Levitz have Down syndrome. Tami does too. Leah, Mitchell’s sister, does not.

Charles: Well, at one time Jason was madly in love with a girl named Leah. Yes, your sister. That scared the hell out of me. One of the happiest moments of my life was when he fell in love with Tami instead of Leah. [...] My feeling was that Leah would eventually go on to college and would become a doctor or a lawyer or something. She would always feel deeply for Jason. But eventually, she would leave Jason behind — because she grew past him — and that would give me a lot of pain. Now with Tami, or another girl who has similar skills, similar potential to Jason, they could grow together. And develop comfort with each other and love for each other and safety with each other. Mitchell, you have a bias and a prejudice against a girl with a disability. You don’t want a girl with a disability.

Mitchell: There are a lot of interpretations of being prejudiced.

Charles: If you can’t consider a girl with a disability, that’s a prejudice.

Now, whether Mitchell is prejudiced against disabled people is one thing and may be true, but Charles seems to come off the more prejudiced in this exchange. He is saying that the only outcome in a relationship where one partner has an intellectual disability and one does not, is for the partner without the intellectual disability to “outgrow” the disabled partner. There’s no room in his mind for such a partnership to work, for growing together to be possible with widely differing cognitive abilities between the two. And then when Mitchell says there’s a lot of ways to be prejudiced (possibly pointing out Charles’s prejudices?) Charles brushes him off.

There is an element of viewing from above in his statement. It’s hard to describe, but it is as if there is a view of his own life as large and expansive, and a view of Mitchell’s, Jason’s, and Tami’s life as considerably narrow and constricted. This view permeates what is not meant to be a book like that (it’s meant to be a more positive book than that), despite the fact that Mitchell Kingsley and Jason Levitz at times openly contradict the idea that their lives are any narrower than anyone else’s.

Bittersweet Farms is owned and operated by a non-profit corporation, the Autistic Communtiy of Northwest Ohio, Inc. The farmstead was immediately named “Bittersweet Farms” after a Bittersweet vine found in the field. The name seemed to exemplify perfectly the Board’s experience in realizing the creation of the program, as well as the bitter-sweet lives of the autistic. The program was quickly translated into a plan for the site, which was intended to insure the interrelatedness of all future construction, its coherence with the philosophy of Bittersweet Farms and the desire to adopt an architecture which reflected the ideals and goals of the program. The result is buildings which are both home-like and functional and which are at home in the rural Midwest. Home and farm buildings, grouped by function, are integrated by overall style and building materials. Fields, lawns, woods, ponds, and pasture flow into one another, linked by trees and flowers profusely planted by the residents and staff. The overall effect is one of beauty, tranquility, and purpose.

That’s from Bettye Ruth Kay’s chapter in Autistic Adults at Bittersweet Farms. I can explain even less why this book or that quote exemplifies the view from above, but it does even more through and through than Count Us In, which is relatively mild in comparison.

Another book that is saturated with view-from-aboveness, is Independence Bound. I often recommend the book because it shows what’s possible for someone not remotely labeled high-functioning, but at the same time… very view-from-above. “Trent loves his brothers and exhibits smiles when they come to visit.” I can’t explain that one either, or why the whole book feels view-from-above-ish.

I view my life, and the lives of my friends, as good lives, whole lives, and complete lives. I am often startled when I come across other people’s views of how restricted our lives supposedly are. Somehow our lives, as full as anyone else’s, become limited and pathetic, devoid of something vital. Somehow the fundamentals of who we really are get left out, and instead of real people, we become shadow-people or partial people. We know that we are real, but that is not how most other people see us. There is a view of our lives as being like theirs, only with the core cut out somehow.

This sense of people cutting the core out when describing people is not limited to non-disabled people. Disabled people do it too, when describing others or even when describing themselves. Kamran Nazeer’s book is full of this attitude when describing his former classmates, and it is this attitude that made me dislike the book so strongly.

The website The Autism Picture Page engages in it — especially in articles such as Contrasts — much though I like the pictures and the somewhat autie-positive attitude.

People do it to us all the time in real life, and it becomes second nature.

It’s notable that not all books about disabled people by non-disabled people follow this pattern, either. It’s not an inevitable consequence of the subject matter or who the author is, it’s a consequence of a particular way of looking at our lives.

It’s also a consequence of looking at our lives as fodder for metaphor about everyone else’s lives. Oliver Sacks does this constantly in his books and it makes his writing intensely aversive to read. Kristina Chew does this frequently in her Autismland blog. The interesting thing is, neither Sacks nor Chew would probably view themselves as doing that — they both view themselves as possibly doing the opposite. I know that one of them will read this, and I will be at a total loss as to how to explain why I see this in her writing, and the writing of Oliver Sacks, yet not in some other people’s writing. And why I see her writing as so totally view-from-above that I often cannot get through it. (I am also aware this could look like an insult. I know no better way of phrasing it. Just because another blog author and I happen to have both been selected for the same blogging group according to someone else’s taste in blogs doesn’t mean that we are going to agree on things like this.)

Yet there are people who write about the same sorts of scenarios, from the same sorts of perspectives, and do not write it in a view-from-above fashion. I can’t explain the difference. Dave Hingsburger went from writing view-from-above type views to writing non-view-from-above-type views, but both sets of writing are about the same people and situations. I don’t know how to explain how he changed over time, but I have most of his books and I can see the change in his writing. Not that the earliest books are valueless or don’t contain good ideas, far from it, but it’s only later on that he loses the view-from-above perspective more and more.

Reading stuff from the view-from-above perspective, by the way, feels like eating badly made potato salad. I try to swallow it and end up choking and retching. This is only partly metaphor, I do become somewhat nauseated reading view-from-above writings too much in sequence. There’s a reason I am no longer quoting anything, I could not stand looking through the books for quotes. It’s a strong aversion that gets to the point of feeling almost physiological. Perhaps I have too much empathy for the subjects of this particular literary treatment, the same way I cringe when I see children with faces and bodies like mine displayed naked in medical journals held in place by large men. The sense of simultaneous violation and distortion is too great to stand, even when the person is superficially agreeable to the situation. My body reacts physically to this kind of writing and art as if it’s trying to get rid of some kind of spiritual poison before the room starts spinning and I can’t tell which way is up anymore.

I’ve never been able to explain this reaction to people, though. People often say that this or that book or website — which never deviates from the view-from-above viewpoint for one instant (I’m not talking about ones that satirize it or use it to make a point and then stop) — is such a great one (in terms of acceptance, or positivity, etc, so we’re not talking cure stuff here) that there is really no reason I should complain about it. Probably 9 times out of 10, the problem is that it’s a view-from-above piece of writing through and through, and that my aversion to that stuff is just too strong in that case to deal with it. In some instances I might still recommend it to people (despite my strong aversion), but my emotional reaction is just to not be able to stand it.

There are many different kinds of view-from-above patterns, too. Some are more pervasive than others. Some come at things from different angles than others. And some occur within the contexts of books or writings that I like and will recommend to some people for some reasons — but the view-from-above factor is always a detracting factor. Some of the strangest view-from-above stuff is stuff where the author clearly wants to sound positive about disabled people, like Oliver Sacks is always trying for, but never quite gets there because of the view-from-above factor among other things. Many parents of disabled children write about their children that way — I also remember it throughout Retarded Isn’t Stupid, Mom! which is another book I occasionally recommend because despite its flaws (and its incredibly view-from-above vantage point, including the end where the merits of all sorts of awful things are discussed as if they really do have merits) it shows a woman with a developmental disability living independently at a time when we just were not expected to do that. Even some disabled people write about themselves or other people in this manner. It is never a positive addition to a piece of writing, even when the piece of writing is useful. Unless, of course, as I’ve seen it done and at times done myself, it’s being used to satirize or make a point about that pattern.

It is the view-from-above pattern, for instance, that I drew on when I wrote the first part of Getting the Truth Out. I understand fully some people’s inability to finish that first section and get on to the rest of it because of pure disgust, but I did not write it for those people. Anyone who gets queasy around view-from-above stuff already understands at least part of the basic message I was trying to get across.

After writing all this, I started looking for book reviews of Oliver Sacks’s stuff in order to capture some of the ideas I’m trying to get across without having to slog through more view-from-above stuff in order to do it. Some of the reviews understood the view-from-above perspective and commented on various aspects of it, and others gushed about how compassionate he was to his patients and wondered what the less positive reviewers were talking about. (Gushing about how wonderful and compassionate various people are is a particular response I get often when I start talking about how I can’t stomach the view-from-above standpoint.)

[Sacks's] mode of sympathetic observation is distinct from Grandin’ s mode of `seeing’ because it encompasses her `seeing’ as only one of many modes of vision or understanding. By implication, his — the authorial presence — is the complete humanity by which hers is defined as partial…

That’s from “Ethnography and Oliver Sacks: The Anthropologist on Mars” by John Wiltshire.

The most dominant figure in the text, however, is not one of the patients, but Oliver Sacks. Why does he play such a large role in the stories he tells? Whereas he develops very little in the way of therapy, medicinal or surgical curatives, why is his presence so dominant in the text? Even though he does discuss a series of fascinating individuals, the strongest link that forms the book is the forceful presence of Oliver Sacks.

One movement Sacks makes to increase his importance in the text is to shift his function as doctor from healer to interpreter. Since Sacks is not able to reverse the effects of the neurological illnesses of his patients, he makes diagnosis his prime function. While the previous physicians have generally mislabeled and misunderstood his patients, he alone has the ability to name the disease. Sacks is able to demonstrate his power and knowledge by examining the variety of mental tics and awkward mannerisms and giving them a name.

That’s from “Your Friendly Neighborhood Neurologist: Dr. Oliver Sacks and the Cultural View of Physicians” by William Hunter.

These rounded, richly-developed characters certainly do come alive in Awakenings and The Man Who Mistook His Wife For a Hat, but it is an equivocal liveliness.It is often, in fact, difficult to discern just where the patients’ reality ends and Sacks’s imagination begins. In The Man Who Mistook His Wife For a Hat, Sacks writes about a sad, orphaned, retarded young woman named Rebecca. In the hospital she is the image of despair and misery, but Sacks sees her one day sitting in the garden.

Sitting there, in a light dress, her face calm and slightly smiling, she suddenly brought to mind one of Chekhov’s young women–Irene, Anya, Sonya, Nina–seen against the backdrop of a Chekhovian Cherry Orchard . . . This was my human, as opposed to my neurological imagination (p. 171).

This is an example, I think, of the physician’s fine and developed sensibility virtually annulling the existence of the woman he thinks he honors. [...] It is also too bad that these patients, who do come to life on the page, and have been “awakened”–albeit as fictional characters–by the author, should finally disappear again under the weight of Sacks’s heavy-handed metaphysics.

That’s from “The Soul of Oliver Sacks” by Ella Kusnetz.

Oliver Sacks, of course, is always looking around for the neurological basis for the ‘soul’, and thus usually insults at least a few disabled people every book he writes by pondering whether they are soulless or not. But the reviewers are onto something when they talk about how much of himself he throws into his characters (and, the way he writes them, I use the word “character” advisedly). There’s a sense of looming Oliver-Sacks-ness over everything he writes, to the point where the people he describes nearly always look like pale shadow-people in the face of the all-real Oliver Sacks.

The first part deals with ‘partial humanity’, and this is one important part of view-from-above. (I wrote the first stuff about some people being considered only partial, before seeing that quote, for reference.) This is true even of view-from-above writing that purports to show us as fully human; view-from-above writing is in many was the absolute opposite of life’s infinite richness.

So, that’s my rambling, repetitive, patchy attempt to summarize something I know when I see but can’t explain, and that occurs even in ostensibly “positive” (or even “from the inside”) representations of whatever sort of people is being view-from-aboved at that moment. Please discuss.

Articles of Misunderstanding

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The “Articles of Understanding” that GRASP and Autism Speaks have written, are not about understanding at all. The only thing they will promote is misunderstanding on all sides.

Alison Tepper Singer’s article can basically be reduced to the old, “LFA bad. HFA good. Don’t you get it yet?” stereotype that looks good on paper if you don’t understand what’s behind it. I emailed her urging her to read Getting the Truth Out, but I never received any particular reply. Her argument shows no subtlety or understanding of the real issues, just the standard and fairly naive response that of course people would want to cure someone like her daughter, who she portrays in an entirely negative light (and with the standard litany of “shocking” descriptors). Not that portraying her in an entirely negative light is so surprising in someone whose only stated reason for not killing her (obviously very loving, by the way) autistic daughter is because she has a non-autistic daughter at home.

Carley’s, though, is little better. He also discusses those he regards as LFA, but seems to not have spent enough time around us to do more than repeat hackneyed stereotypes. Happy in our own worlds? Give me a break. Not that, given the hostility I’ve heard about (from several GRASP members) in parts of the GRASP community, towards non-speaking auties, most of them have probably never even met one of us. And that “white-walled room” on my website is my living room. I don’t really find the concept of so-called regression all that frightening (or all that accurate).

So the entire debate between the two of them, as regards those of us who have at some point or another been labeled low-functioning, is between “Low-functioning autistic people are bags of misery and dysfunction,” and “Low-functioning autistic people are ‘happy in their own worlds’.”

Sorry, but, both of you? It’s way more complicated than that, and portraying the divides in the autism community that way (as well as the divides in what people think of those labeled at some point as low-functioning) does a total disservice to all of us. And makes a horrible organization sound more “understanding” than it is, merely for patronizingly informing us of the existence of people who can’t speak etc. (trust me, lady, I’ve noticed).