Views from above


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.


About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

125 responses »

  1. Ruka once did a book review where he mentioned an attitude he called “postcards from the asylum.” It’s similar to what you describe here– something that manages to simultaneously be a little condescending, where it never leaves your mind that the author is interpreting this person rather than listening to them, who superficially makes pretenses of trying to make the reader relate to you but is actually presenting you in an exoticized light. And there’s always that laid-on veneer of interpretation– they always manage to make it look either cutesy, horrific, or bizarre, when to the person who experiences it, it’s none of those things and simply their life. Although how others choose to react to them may easily come across as any of the above.

    We’ve got a whole lot of articles from the 80s and 90s (most of them were technically collected by Astraea) that are saturated with this attitude, things like you said.

    “Mrs. Ross, 40, of Redondo Beach, California, said she eventually learned she was living with an ‘inner family’ of 13 personalities, each with a name and a purpose.”

    “Like most multiples, Marion has been through more trials than Job, including misdiagnosis as a schizophrenic, commitment to a Bedlamesque state mental hospital, repeated suicide attempts, inappropriate drug treatment, even a would-be exorcism.”

    “The Ripper, a violent male personality given to fits of rage, felt angry and threatened because the Child, a youngster of 4, had told their therapist the deeply hidden secrets the Ripper had guarded for so many years.”

    (Well, there’s the luridness in addition to the attitude, which crops up in a lot of autism articles too, although I think the luridness is actually part and parcel of the attitude in some cases.)

    I could probably go through, if I really tried, and pick out a lot of discrete elements that contribute to the attitude, such as word choice, how people are described immediately after being introduced, physical descriptions of people, what aspects are focused on and which are ignored, but none of those are it. And even if I could say “Well, this thing and this thing and that thing make it condescending and add an air of unwarranted authority on the writer’s behalf and like they’re looking down on you like rats in a maze,” I don’t think isolating those specific things would fully get rid of the attitude, either. It’s something very permeating, like an odor– but I also don’t want to get too intensely into ripping such writing apart to pick out what makes it like that, because of what you said here:

    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.

    Yes, that’s as good a description of any that I’ve found to it, I think. The feeling of having to purge yourself of it continuously as you read, and the feeling that it’s going to get into your head and sit there influencing and poisoning you unless you shove it out forcefully, comes up for us often while reading such things. There’s also another kind of writing I react physically to, that’s also a very intangible attitude, where the message seems less to be “view from above” but more “I AM RIGHT I AM RIGHT,” though that’s… neither here nor there.

    I often find myself at odds with people in the LJ-Multiplicity community and elsewhere, when people ask “what books should I read” (answer: if you’re talking about professional ones, I tend to tell people not to read any) or “which books have a positive depiction of plural characters” (answer: there are almost none, except in science fiction and fantasy). Because there are some people who can gloss right over the “view from above,” or say “Well, but the author did a lot of other things right, so I can overlook the flaws,” and I… can’t. I mean, I can grit my teeth and turn the page, but it sticks in the back of my head like a nasty taste, and the knowledge that the author has that attitude colors my perception of the rest of the book. And my subsequent conclusions as to the accuracy of their perceptions, or the lack thereof.

    Based on what I’ve seen, however, I don’t actually think my fear of having my thinking invaded by such attitudes is in any way unwarranted. People can just as easily be made to describe themselves in the same kinds of pathologized, intellectualized, medicalized terms (I get very annoyed at some autistic authors for this), to package themselves for others’ consumption. It’s easy to fall into, and difficult to stay in a constant state of fighting it.

  2. My impression of the Karman Nazeer book was almost exactly the opposite: that his classmates (or at least the ones he chose to feature) were limited more by society’s view of them than by their actual “disabilities”.

    Do you know if Robin Williams’s version in Awakenings was pretty close to the real life Dr. Sacks? Because when I saw it, I found Sacks, as impersonated by Williams, was someone quite like myself. Which would imply that Sacks might himself be on the spectrum. (I’ve never gotten around to reading the books.)

  3. I tend to view disabled people as primarily limited by the societies we live in, but I’m not sure that was Nazeer’s take on the matter. (So, I would see people that way, even if the author didn’t write them that way.) Even if the author did write them consciously that way, that doesn’t preclude the view-from-above thing. That book was pretty thoroughly saturated with that view-from-above thing I’m talking about. (But this is part of what I meant: It is not how “positive” a portrayal is that makes the difference in what is and is not a view-from-above sort of thing.)

    I don’t know if that was accurate or not, nor am I totally sure how much of Sacks’s public persona matches his personality. It’s been ages since I’ve seen Awakenings, and I don’t really keep up with his writing anymore.

  4. I used to think Oliver Sacks was this hero-like person… But after I saw the video of George and Charles the savant twins, I remembered reading about the calendar calculating twins in one of Sacks’ books and how he described them, basically, as ugly. And he set out to trick them with a math question or something that seemed disrespectful, once I saw video of George and Charles. I kept thinking, these can’t be the same twins that Sacks described because these guys don’t even look like Sacks described them… he said they were like tweedle-dum and tweedle-dee or something, he made them sound freaky looking. But what I saw on the video were two pretty nice looking guys.

    Oliver Sacks commentary in the Stephen Wiltshire book, “Floating Cities” is gross, he comes across like an egomaniacal fool, or a bit mentally ill. It’s really sad if you think that Sacks might be on the spectrum himself. Maybe his, “view from above” stuff is trying to distance himself from the freaks as a non-freak.

    I would say this process is called “claiming a privileged perspective.” Or maybe, “privileging of perspective.”

  5. Julian:

    It’d be cool if there were someone strong-stomached enough (maybe there already is) to figure out which elements make it that way. I couldn’t finish this entry the way I wanted to, because I couldn’t read the material enough without that spit-it-out-spit-it-out-NOW reaction with my mind.

    That reaction seems not to be “vomiting in disgust” (even though I might be disgusted by that point), but more like “vomiting of the kind that results from poisoning”, or the sort of uncontrollable coughing that happens when inhaling smoke during a fire or something — there’s a sense of trying to expel something that’s trying to get inside of me and that doesn’t belong there.

    And, you’re right, it’s like an odor, I’m not sure it can be quantified (although maybe someone with a gas mask and other equipment could isolate the chemical components — I don’t have that kind of equipment).

    There do seem to be degrees of it. Even Hingsburger’s most view-from-above writing (at least that I’ve seen) doesn’t provoke that reaction as strongly as, say, Oliver Sacks, who in turn doesn’t always provoke that reaction as strongly as some others. (Although Sacks’s writing is already far above the threshold at which I find it hard to differentiate.)

    The biggest problem I have, though, isn’t when reading, because I can put the book down, close the website, etc — I don’t have to read anything I don’t want to, and often exercise that right. It’s when I’m actually trying to hold a conversation with someone who is speaking from this viewpoint. About someone else. Often someone I know, or someone a lot like people I know (or a lot like me).

    It’s very easy for me to just lose it rapidly in those circumstances, because I know no easy, rational way to explain my reaction.

    I do agree with you completely that the reaction is a productive one. It’s the same way your body vomits or coughs instinctively in response to certain noxious stimuli. That view-from-above thing can creep into and take over a person’s mind (and even their thinking about themselves) with disturbing agility and speed. Sort of like Disability Shame Speaks, which is about a seriously overlapping concept

    And, with regards to isolating the pieces not totally helping, you’re probably right. Because the specific aspects it takes in finished outward form are quite varied but all seem to come from a similar sort of source-mindset, changing the outward form won’t help the source-mindset. It’d be nice to be able to explain it to people, though, I just don’t know, at all, the words for the entire concept, just for bits and pieces (before the discomfort sets in too much to think).

  6. “I tend to view disabled people as primarily limited by the societies we live in…”

    Me too. But given that you share this view, I’m curious as to why you continue to use the term “disabled” at all. The term has always struck me as a classic example of the “view-from-above” mentality that you’ve critiqued (very well, I think) in this post.

  7. I have seen evidences of that “view” in interactions on parent groups where I know that intellectually I am on the same level with the group but there is a difference in that by admitting you have a label some feel obliged to feel sorry about or condescending towards (or outright ignore you) or defintely feel a superiority because of course they do not have a label. It is actually why I had made an effort for a while to not disclose that because I knew I would be treated differently. I know another mom who also made a “confession” to having a label when she could no longer tolerate the misinformation and rightly assumed that everyone would now think of her as crazy. Some people even if they are making an effort to be understanding still see a person as having a scarlet letter on them or something – regardless of the variety of labels like autism, OCD, bi-polar, ect. That is why I often don’t think the actual label itself matters, but merely the fact that you get labeled. Unless you get into smaller groups where people WITH the “label” will find a way to dissasociate or catagorize people onto various levels.

    One book I read (an older one on OCD) called The Boy Who Could Not Stop Washing was different to me because it was written it seemed to me by someone who did not “imagine” what having OCD was like. The author did not have it – nor did I get this sense of pity or awe. That may an oversimplification on my part though because of the other books I have seen about OCD or autism that have a presumption of knowledge about the condition. I also recently came across someone with the attitude that it is a disservice to kids on the spectrum to give them additional lables. I didn’t understand what is supposed to be meant by “disservice” because in the context being made it sounded insulting. But it was a label I have so how nice to have it be considered a disservice to someone (lol).

  8. I am definitely familiar with this “view from above” perspective. It’s very prevalent in most media-published articles about autism — one thing I’ve noticed is this tendency to use the word “we” to refer only to “we who are not autistic”, and to refer to things like, “the difference between autistic brains and our brains”.

    And I’ve also noticed that articles or pieces of writing BY autistic people tend to be preceded by some sort of introduction written by a nonautistic person that sets the stage for the reader to experience a perspective of “other-ness” in what they are about to read.

    For instance, the summary paragraph on the back of Thinking In Pictures includes the line,

    “…a woman who thinks, feels and experiences the world in ways that are incomprehensible to the rest of us.”

    It’s like they’re just assuming that autistic people aren’t actually going to be reading the book. So we’re not included in the “us”.

  9. Nicky: I use “disabled” because…

    * that’s how most of the disability community self-identifies
    * shifting words around doesn’t actually make that much of a difference (and only leads to confusion — handicapped was supposed to take care of this problem, for instance, by making it clear that society was involved, and now it’s way out of favor)
    * cutesy euphemisms are even more view-from-above than just the word itself
    * “disabled” doesn’t have a particularly negative or even medical meaning to me
    * “disabled” is often used to mean “dis-enabled by society”.
    * there are no more accurate and easily-understood words yet to describe what I’m trying to describe, and I’m not going to make up neologisms for that one
    * most attempts to shy away from the word “disability” are motivated by assorted (often covert) forms of ableism, and it shows up in the words people try to replace it with
    * I have trouble coming up with words to begin with, and often use terms loosely, I think my intent is clear in how I use them (just as a person could use all the perfectly correct terminology and have a view-from-above sort of perspective, a person can say “disabled” and “retarded” and “crippled” or even worse, and not have such a perspective, this problem isn’t that formulaic)

  10. i recognized you immediately (little girl you), behind a dear cat in the Autism Pictures Pages.

    is it the secondguessing of the Other person, that makes view-from-above? or simply the Other-ing of the person under consideration?

    thinking of secondlife, if i use separate camera i never see what my avatar sees. i see view from above (or under, or skewed sideways, or looking opposite direction entirely).

    Amy told me how to use “mouse-view”, which is 1st-person view. i tried it and in that view could see what my avatar sees.

    how would you go about seeing first-person view from a real person? other than really asking them what is their view and really listening… and really taking that into account somehow.

  11. Ah! Thanks for that explanation! It actually hadn’t occurred to me that “disabled” could be interpreted as meaning “dis-enabled by society.” Now that you’ve given me that perspective on the term, its use in your writing won’t trouble me anymore.

    I tend to use the word “marginalized,” which emphasizes the “dis-enabled by society” factor. But although “marginalized” is a great term for talking about those situations in which the issues facing Autistic/blind/wheelchair-using/etc. people overlap the civil rights issues facing other social minority groups, there are many situations in which it’s not sufficiently precise. Now that you’ve helped me overcome my aversion to the word “disabled,” maybe I’ll try using it myself, next time I need a more specific term than “marginalized.”

  12. “Other” …
    i may have used it wrong, as i am not all that expert in postmodernism (not even expert enough to know if that is a postmodernist phrase)… but what i meant it to mean was just making or identifying people as Other who don’t have to be… if, for example we could just see all people as people. or as individuals, and we by definition can’t pretend to know what’s going on with another person unless we ask them, but when we ask them we could maybe believe their answer.

    i just realized i am making a confusion. on the one hand it’s inevitable that other ppl are “other” because they are not us.

    “Other” with capital, i meant as “another person is unlike me” -in some way that makes him less a person than me- (opinion) which is different from “another person is himself, and not me” (fact).

  13. Just a question, do you mean with ‘view from above’ something like the word ‘patronizing’ means ?

    When I read your text, I thought about the Dutch word ‘belerend’ which is in my dictionary translated as ‘pedantic’, which didn’t felt right, but looking in a few more dictionaries I found ‘patronizing’, but I’m not sure that is what you meant exactly.

  14. What you said about Oliver Sacks pretty much explains why his books are in the fiction section of our bookcase and not in the disability section.

    ^Meta has speculated about Sacks’ neurology before; that perhaps he’s one of those people who think they’re neurotypical but are really autistic, leading to mental reactions like “Hey, that’s what I do when I… …nah, that can’t be why she does it, she’s not like me.” When we didn’t know we were autistic yet, we used to think that we were missing something when people said that autistics were so different, so hard to empathize with, etc.; and that in some way they must be really much stranger than they seemed to us. We see similar reactions from relatives who don’t know they’re autistic themselves.

  15. Um, make that “literature”, not “fiction”. It’s essay-like, but much more general-essay-like than disability-essay-like, because you’re more engulfed by his musings about everthing and everybody than… well, than by everything and everybody. The atmosphere is a bit fictional even though the form isn’t; if Charles Dickens ever wrote an article about meeting Tiny Tim, it would fall into the same category.

  16. In some of the reviews I was going through to get quotes for this entry, there was serious speculation as to how much of his characters are fictionalized, as in they’re real people but that he puts his words into their mouths.

    For instance, from the same review that the final quote came from:

    His books abound with similar instances of confusion as to who is the real hero, physician or patient. All of the patients, as he describes them individually, are invariably endowed with such qualities as “intelligence, imagination, judgement, and humour,” with “unsparing perspicacity,” or “the power to remember, to compare, to dissect, to testify” (1983,p. 19). The “human spirit” of each one of his subjects has always been “preserved” despite the devastation of disease (1985,p. 38). But why are the very same patients, when described not as individuals but in aggregate, so notably lacking in intelligence and charm? And why are the able-bodied members of their families so spiritually deadened? Sacks describes the patients on a ward complaining that one of their members “talks to ‘isself” (1983,p. 81). The mother of another patient complains of “your darned El-Dopey” (1983,p. 197). Sometimes the confusing split occurs in one and the same person. We learn about a Korsakov’s patient in The Man Who Mistook His Wife For a Hat, a former submarine radio operator, that he can draw the periodic table up to the “transuranic elements,” name the planets, their dates of discovery, distance from the sun, estimated mass and gravity. But when Sacks enters his hospital room, this astonishingly well-educated man greets him with, “Hiya Doc . . . You are a doc, ain’t you? . . . Neurologist? Hey, there’s something wrong with my nerves?” (p. 24). Have these conversations been debased in the portrayal, or has Sacks elevated his estimation of their capacities and characters? Whichever it is hardly matters, for the problem is the same either way: these people exist as undifferentiated rabble just until the point that they are singled out and transformed into fictional characters through the writer’s notice and attention.

    Even when the patients are themselves eloquent about their own condition, we are simply never sure whose words are whose. (I noticed that the English-born Sacks occasionally places in the mouths of Americans such British locutions as “going in hospital” (1983,p. 150), thus justifying my suspicions that he is making them up.) A woman in The Man Who Mistook His Wife For a Hat, who is stricken by a mysterious disruption of her proprioceptive “sixth” sense, struggles for an understanding of her situation with the most hapless inarticulateness (“What I must do then . . . is use my eyes in every situation where I used–what do you call it?–proprioception before”) alternating with the most sublime eloquence (“This proprioception is like the eyes of the body, the way the body sees itself. And if it goes . . . it’s like the body is blind”) (p. 46). Several essays later, writing about a similar condition in an old man, Sacks Says, in his own voice, “If proprioception is completely knocked out, the body becomes, so to speak, blind and deaf to itself” (p. 68). Is all of this wisdom appropriated from or attributed to his patients? In other cases, Sacks seems to arrogate to himself their very history and memories. The woman patient with the proprioceptive disorder complains that she has no memory of ever having been normal. Sacks’s response, he says, is to “show her a home movie with her children taken just a few weeks before her polyneuritis” (p. 50). How on earth, one asks, does Sacks know about the existence of such a home movie and why is he the one to show it to her?

    Sometimes, finally, these so-called case histories are just fictionalizing gone wild. In The Man Who Mistook His Wife For a Hat, a woman with multiple neurological problems also has a functional atrophy of her hands. They are not medically impaired, but she and her family have believed for her entire life that they are. Sacks relates the clever strategy he devises for getting her to use her hands–having the nurses, one afternoon, place her luncheon bagel slightly out of reach. Is it believable that such an event had never, from infancy on, occurred naturally to this woman? In another patient, an autistic man, Sacks discovers artistic talent that had been more or less dormant his entire life. Before entering the hospital, says Sacks, the patient had been living in a “cellar room,” isolated from the world, in a state of “moral closeness and febrile intimacy,” occasionally finding, “between seizures,” pictorial magazines like National Geographic and “stumps of pencil” with which to copy the pictures (p. 211-212). At this point this over-heated prose, this Dostoevskian drama, verges on comedy. Who gave this poor guy copies of National Geographic but left him to forage for his own stumps of pencil?

    Of course, that reviewer relies on her own stereotypes, and could well be wrong about some of that, and she is also definitely from a psychoanalytic school of thought, but she makes some really good points about his writing (if you weed out the therapy-babble).

  17. I’m trying to get a better understanding of this view-from-above. I’ve read the websites mentioned, and so far, there’s two ideas I’m getting that connect to this. I’ll list them, and if anyone can help clarify how or if they’re connected to view-from above, please do:

    – The power to define. The writer is saying, “I have the right to define them. If you want to know what their life is really like, who they really are, my outside observations are the best way to do it, because I know this better than they do.”

    – A longer leash. The idea that these people are inherently restricted in how much they can do. They’re always bound to a certain limited territory, and the best you can do is give them a longer lead to run around on. They’re not quite good enough to run free. Never think about the hand holding the leash.

    I’m not sure if these are the attitude described, or simply an overlapping phenomenon, so if anyone’s got a better idea, please let me know.

  18. I don’t know what this phenomenon is called by sociologists, but “othering” sounds just fine to me.

    I don’t know if these are similar phenomena, but maybe:

    The psychoanalyst Alfred Adler had a theory of “masculine protest” which was basically that men climb mountains in order to achieve, but women climb mountains in order to prove that they’re as good as men.

    And then there’s the 17th century lexicographer and conversationalist Samuel Johnson” “Sir, a woman’s preaching is like a dog’s walking on his hind legs. It is not done well; but you are surprised to find it done at all.”

    It’s where nothing you can do or say can get you taken seriously because everything you do or say is by definition a demonstration of your otherness.

    Oh, and I have an acquaintance who met Oliver Sacks while studying neuropsychology. She later left the field because you couldn’t do anything for people: you could just stand back and describe them.

  19. That mountain-climbing thing reminded me of something that happened to me in Yosemite.

    I was there on a hike with my class, and I was the only girl who had not claimed to be “too dizzy to continue” (one person was dizzy, the rest were her friends and wanted to stay with her).

    So I was there with all the boys and a (male) teacher.

    We were on some switchbacks, and the teacher scrambled up a rock instead of walking the long way around at one point.

    Then he told us that nobody in the class could do it, so not even to bother trying.

    Without even thinking about it, I scrambled right up after him. (I have always been good at climbing things, at least things that say “climb me” in a certain way — if they don’t, I can’t do it.)

    His back was turned at that moment.

    One of the guys in my class said really excitedly that I had just done what the teacher said was impossible for any of us.

    The teacher thought the class was playing a joke on him.

    Then all the boys joined in saying that I’d really done it.

    He still thought they were joking with him.

    I don’t think he ever believed I did that — because of the fact that I was a girl, and the fact that I’m… well… me.

    Never been, at school, considered athletic or graceful, because I could not do the things they taught at school, or climb the artificial playground structures as well as the other girls, or even do a single pull-up. Pretty much every single athletic activity at school seemed almost designed to prove how unathletic I was.

    But in reality, I balanced on fences and rooftops, I climbed trees and rocks, I could (while tree-climbing) grab onto with arms and legs and rotate up to on top of branches that were thicker than my entire body, and as long as it was between my body and a certain kind of object and there was no single defined “has to be done this way” thing attached to it, I could outclimb any of them.

    But, yeah, being a girl, and being me, I wasn’t expected to scramble effortlessly up a rock, even though that’s exactly the sort of thing I do.

  20. J — I think you’ve come closer than anyone to describing this stuff.

    It’s not simple condescension or even simple pathologizing, it’s a different shape than either of those even though it can include both.

    The power to define and the short leash are part of it. I also think there’s an element of size, of “I live in a big world and these people live in smaller worlds.” And a sense of… here’s a poem I wrote that wasn’t consciously written about this, but that reminds me of what I am trying to say:

    Your whizzing dizzy minds
    Built a cotton candy mess
    Ripped the heart out of the world
    Blew up the remains
    Now you expect us to
    Climb your rickety steps
    Call it love and freedom
    And wait for the floor to collapse

    The part about the heart being taken out, something central being missing, is what I’m trying to get at. The person being described (whether the person writing, or someone else) becomes a mass of fuzz. Like television static. They are in the shape of the person, but whatever makes them who they are, is not there. This is not because they as a person are missing anything, but because of the way the descriptions work.

    But people can also do this to themselves. The webpage Asperger’s Syndrome and Making Sense strikes me as incredibly view-from-above even though he’s mostly describing himself.

  21. I get the same sensation when I notice people doing this in real life, either to me or to other disabled people. It’s always felt, to me, like being coated in slime which needs to be scrubbed off urgently. It’s made me actively shudder before. I named it “othering” before I knew that “othering” was a commonly-used word or even what was really causing the slime-feeling.

    And it doesn’t matter how “positive” the attitude supposedly is, either, as you said. A lot of view-from-above writers present outwardly “positive” views (for instance, talking about how inspirational a particular disabled person supposedly is) while doing a huge amount of othering.

    It comes into a lot of disability literature in some form or another, and seems especially common in the autistic-autobiography genre. Which is probably the main reason why I’ve struggled through a lot of the ones that I’ve read.

  22. I think people can do this to themselves if they become convinced that they are so very different. They lose their abilility to see their commonality and then also start to define themselves by their label. I think the phrase “people with (*insert label here)” immediately sets the tone that “those” people are seperated or limited.

  23. The webpage Asperger’s Syndrome and Making Sense strikes me as incredibly view-from-above even though he’s mostly describing himself.

    …well, the CONSTANT USE OF CAPITAL LETTERS AND BOLDFACE FOLLOWED BY RIDICULOUS NUMBERS OF EXCLAMATION POINTS is certainly something I’ve seen used on plenty of view-from-above parental or significant other websites.

    Beyond that, I tried to read it, but there were so many things I disagreed with that I wasn’t up to having to fight all that out of my head.

    What bothers me most of all, I think, is when this sort of writing and self-dissection is lauded as “honesty” and “bravery”, and the people who write it as examples of those who are supposedly truly honest with themselves about their limitations and the nature of their disability, rather than as examples of people whose attitude is truly dangerous and frightening.

  24. Julian: I remember reading in American Normal (a horrible book full of factual errors… Dave Spicer, who was misportrayed in it, decribes some of them)… something along the lines, that the author somehow thought authors like Jonathan Mitchell and David Miedzianik more representative of autistic people’s actual thinking, than others (who were more positive). Or something like that. I wish I had a copy on hand.

    Anyway, if you’ve read their writing, you’ll see general patterns of view-from-aboveness. So, apparently, if a person conforms to that pattern, they’re more authentically disabled… or something.

  25. I sometimes see some other people as proceeding without a theory of autistic mind.
    Not because its necessarily a good idea, in itself: but because it turns around a notion which is often used and applied in speaking about people who are considered autistic.
    When you speak or think about a person in this way, without an adequate theory of their mind: then you cut that core, that core thing out of them.
    The difficulty for non-autistic people, very often, is that they cannot have a theory of autistic mind: because they have little or no understanding of autistic occurrence; and without understanding of that autistic occurence, they cannot understand what the mind at the centre of that occurrence could be doing to sustain it.
    Human occurrence, taken up autistically, involves a comprehensive understanding of everything, that is distinct and different from that understanding of everyhting having to do with non-autistic occurrence.
    Very often, when the non-autistic senses and mind, see the evidence of autistic occurrence: the best that they can come up with, is to explain this evidence as the result of deficits; no (autistic) mind is seen as the author and cause of this evidence, so the mind that actually is (autistically) there is cut out.
    Perhaps only those who inhabit their autistic mind, and occur and live through it, and never abandon it, can avoid this view-from-above which Amanda decries.

  26. Thanks for your reply, Amanda. I’ve been thinking some more about this, and what I came up with seems to fit what you’re saying.

    The power to define seems to be a first premise. It’s not exactly a matter of “I have the right to define you,” since some people use it to declare their own understanding as inferior and defective. It’s like a hierarchy. The professionals are allowed to define the diagnosed, and the normal are allowed define the not-normal. So for the disabled, who are not-normal and diagnosed, the professional definition is given priority, followed by the observations of the normal, with the views of the disabled at the bottom.

    It’s a bit paradoxical, with people arguing, in effect, “You don’t know what it’s like not to be someone like you, so you can’t really know what it’s like to be someone like you.” Also, people with disabilites involving the mind seem to get the worst of it because all mental processes are assumed to be therefore unreliable.

    The commonly accepted defintion, which depends on the power to define, is that disability is the leash. It’s as if the fact of having a disability puts you in the unique category of people who walk through life on a tether. Other difficulties can be considered obstacles, and people can have varying talents for going over or around them, or find somewhere else to go. The disabled must be defined by their disability, which must always be seen as a restraint.

    This is particularly evident in the Asperger’s Syndrome and Making Sense website. The writer not only defines his Asperger’s Syndrome as consisting entirely of deficiencies, but also attributes various problems (not a difference, a leash), including other people’s mistreatment of him as resulting from his percieved defect (not just a leash, but the leash). And his biggest hope is to lead a nearly normal life (aka have a leash so long it rarely pulls him up short).

    I think this connects the “Your world is a tiny subset of my world,” with what I was going for with the longer leash. Ironically, it’s a lot of what’s been used to deny people’s observations about being kept on an actual leash by other people, or other similar restraints that have an actual human on the other end with the pover to let go.

    The power to define comes in when the disabled person complains,”I’m not on a leash. This is a wall I can’t climb. That’s a fence I can climb just fine. Over there is rough ground I can manage when I’m not tired. And right here, you just locked the door in my face.”
    The people with the power to define can simply deny this, because their defintions outrank everyone else’s.

    This is turning into more speech than speculation, but it’s a really interesting topic, and I’m glad someone brought it up. It doesn’t make nauseous (although it makes my skin crawl a bit) so I don’t mind reading through and trying to pin it down.

  27. Anyway, if you’ve read their writing, you’ll see general patterns of view-from-aboveness. So, apparently, if a person conforms to that pattern, they’re more authentically disabled… or something.

    The really “funny” irony that always gets to me is how much more often non-disabled, non-autistic, non-plural, etc, writers are praised for their “authenticity”– often in the course of writing about blatantly fictional characters, some of whom were created from very distorted versions of real people– than people for whom those things are their lives are praised for writing about it, unless they take an Oliver Sacks type of view of their own lives. And even then, it seems like the outsiders are still the ones who get a majority of the accolades. (Some of those writers, we’ve seen in several cases, go on to brag about how the group they’re representing in fictional form supposedly loved it and considered it a perfect representation of themselves. Even when we knew of plenty of people who disliked the depiction very much and had even written to them to tell them so.)

    And, yeah, I don’t know if Jonathan Mitchell knows this, but we know a lot of autistic people who write fiction. We used to have a page of our work online, although we’ve taken a lot of it down.

  28. Autismland scares me. A picture of a kid with his head underwater. Freaky. I’m being oversensitive there though…but reading further….ick ick ick. Sheesh, there is some really icky stuff out there. (and hey, I might do it too). There is the social game of “one upping” everyone else in the room or even one on one. It’s been happening to me a lot lately. As soon as I claim a disability, it seems I’m automatically in some secret under the breathe way some kind of “underclass” now even with the understanding and social facade. It’s like fake pity (that we don’t even want) is a social understanding/double standard everyone has. Humoring and smiling, it dismisses everything we say as “oh that’s nice”. It’s an excuse to ignore yet one more “less than” person.

  29. Well… he likes swimming, so having his head underwater makes sense. My inability to read much there relates more to the literary-metaphor sort of approach to describing autistic people, and the notion of a place called “autismland” that people enter into by knowing an autistic person, etc.

  30. Berke: Do you remember She’s Come Undone by Wally Lamb? I seem to remember a number of readers being stunned that Wally Lamb was male (and all over him to praise his “getting a female character right”), despite the fact that there are a ton of things in that book that are mostly stereotypes of women and fat women in particular, and for that matter stereotypes of psychoanalysis, so that the whole thing has its own sort of view-from-above quality to it.

  31. …yeah, in many of these cases “accuracy” seems to be defined as “how many of the stereotypes you manage to hit on.” And the ones giving praise for it are the ones who’ve bought into the stereotypes about themselves.

    There’s a particular (fictional) book that gets mentioned every once in a while on lj-multiplicity. We weren’t particularly impressed by it, either as an overall work of fiction or as an accurate depiction. The author used both Astraea’s essays and ours in the course of their research and then linked Astraea’s page with dismissive commentary about how their ideas were strange but interesting, but then acted like they constituted a questionable source because they mention that some groups perceive certain “spiritual” (for lack of a better word) elements to be present in their systems. (If you *really* want to read a lot of implausible BS about spiritual elements in-system, there’s always Ralph Allison and his ISH theories.)

    Anyway, people cite this book every once in a while as an example of a “good depiction” because “the author got a lot of things right, even if not everything,” and actually, we don’t think it’s a good depiction. Or that the fact that it talks about gender issues in-system makes it particularly remarkable, as there are some transgender stereotypes being invoked there too. There are a lot of people who seem to think “close but not quite” equals “good enough,” even when the “not quite” parts delve into blatant stereotyping.

  32. view-from-above = elitism?

    Definitions of Elitism on the Web:

    * Rich with a degree better. The perception of superiority based on family, income, job, education, etc.

    * the attitude that society should be governed by an elite group of individuals

    * Elitism is a belief or attitude that an elite— a selected group of persons whose personal abilities, specialized training or other attributes place them at the top of any field (see below)— are the people whose views on a matter are to be taken most seriously, or who are alone fit to govern. Thus elitism sees an elite as occupying a special position of authority or privilege in a group, set apart from the majority of people who do not match up with their abilities or attributes. …

  33. I think I can tell part of why the Bittersweet thing is view from above:

    “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.”

    While I was reading this, I had an old Ronald Colman tape on, an Arabian Nights kind of story. In a synchronous coincidence, just as I read those words, Colman gives some candy to his daughter and says “It’s made with honey and vinegar, like the good and bad things in life.” In the story, he had raised her to believe that dreams and idealism weren’t foolish, but he also wanted her to know it couldn’t always be roses.

    Having a bittersweet life is not limited to autistics. That’s just saying a mixture of pains and joys. That’s what it is to be alive. But they’re pinning “bittersweet” on us, as if our lives would be all roses all the time if we weren’t autistic. The writer is describing our lives for us as if he or she knew better than us what it is like.

    Many autistic lives would have much more honey in them if it weren’t for the interference of other people who presumed to do our thinking and feeling for us.

  34. I hadn’t thought of it quite like that. Hrm. It’s very subtle to me that “autismland” means that but then again, I haven’t read enough of the site in detail to get that. It seems a bit more odd than “above” perspective but I guess reversing roles makes it seem worse. Perhaps the fact that merely knowing someone makes someone a full blown authority and able to say anything at all? Even if the content is ok, the presumptions to say it with that much authority by comparison seems OTT.

  35. Taking the water and the view-from-above metaphors: I can remember an experience when I was being “dealt with” by senior college lecturers. Basically they wished me to stop making criticisms, however articulate and constructive, of what was being delivered as a course: but they wanted to do this “to” me, in a touchy-feely inclusive way.
    What they were saying, the understanding they were using, was so far away from what was real and true for me: that my experience was of being way underwater; and they were blethering on at some surface far above.
    I remember thinking, that it must be like that for so many kids at school.

  36. Found an interesting aspect in Amanda raising this view-from-above aspect of the autismland narrative by christine about charlie.
    What amanda says chimes with my experiences with reading autismland. But going back to autismland to have another read, I find that amanda articulating the matter has made the difficulty largely dissapear. What christine does and says in the narrative of autismland, is part of her being there for charlie: and her so being there is enough; no one need, or perhaps can get it all right, for charlie or any charlie-child; for christine is getting so much right, just by being and remaining there for charlie. maybe she can deal with this view-from-above thing, in some tomorrow, as charlie grows.

  37. There are some really good points being made here. When I think of what Amanda must mean by “view from above” the first words I come to are arrogant condescension. You know, the idea that somehow the autistic person is inferior to everybody else because they experience life in different ways. Of course, J does a good job adding more. If the truth be told, autistics and neuro-typicals all experience the world differently from each other whether it be other neuro-typicals, or other autistics (is that a word?) or both.

    I have been reading the “Autismland blog”. I don’t find the blog to be attempting to be offensive, but I can see why naming it “Autismland” can be considered offensive to this audience here.

    I think that for neuro-typicals like me, it is almost impossible to not eventally, accidently offend a person with autism. I think that this is in large part due to the fact that we are commenting on something that we just don’t really understand or experience. When commenting on something different, even if you approach it from the angle of differnent doesn’t equal inferior, you are still bound to get it wrong either in interpretation of what you are observing and or the expression thereof.

    Our four year old daughter has been diagnosed with autism, adhd-impulsive and possibly bi-polarism, and like any parent, I want to do what is best for her. Whatever that is. I am trying to learn about autism, and obviously here is a great place for me to learn from those who are most qualified to know.

    Edith’s autism doesn’t scare me. Her epilepsy does. She has had quite a few seizures that have lasted over an hour. Let me tell you, as a parent standing beside her bedside in the ER watching her seize while nothing the doctors try seem to help, is an extremly frightening experience. You can help but begining to feel the panic of “is this the end for her this time?

    Has her autism caused us concerns? Of course. There are anger issues, self injury issues that are of importance to us. We can’t just take her with us shopping, church etc. But, I am not necessarily looking for a cure for her autism. I do admit that I would love for her epilepsy to go away!!!

    I don’t think a “cure” for autism is even possible. What is more important for Edith regarding her autism, as well as her other diagnosed conditions is that we help her to be able to live her life to the fullest quality possible. Her joy matters. Her ability to express her desires and control her destiny to her satisfaction is our number one goal as parents.

    I am reticent when it comes to just going head long into whatever is out there. For instance, consider ABA. I understand, that it can be intensively intrusive on her. I don’t want to subject Edith to something that she doesn’t need in the first place and that furthermore could cause her pain just because its there. The same is true of the glutein/casein (sp?) diet, the dubious “chelation” and other things.

    I do, however, find the “Autismland” blog helpful. Because, as a parent it helps to see how others are trying to help their child, even if I may not follow the same path.

    I hope I haven’t offended anyone here. If I have, please forgive me, because, I am admittedly dealing with something that is potentially “way over my head”, but that I must deal with nonetheless.

  38. Having a bittersweet life is not limited to autistics. That’s just saying a mixture of pains and joys. That’s what it is to be alive. But they’re pinning “bittersweet” on us, as if our lives would be all roses all the time if we weren’t autistic. The writer is describing our lives for us as if he or she knew better than us what it is like.

    This is what I meant with “Other-ing”. Making someone(s) seem Other and different when really that’s just another kind of human.

    Is it the same thing that “aspie supremacists” do when they talk about “Humans” as some species inferior to us? Feels similar to me…

  39. “* I have trouble coming up with words to begin with, and often use terms loosely, I think my intent is clear in how I use them (just as a person could use all the perfectly correct terminology and have a view-from-above sort of perspective, a person can say “disabled” and “retarded” and “crippled” or even worse, and not have such a perspective, this problem isn’t that formulaic)”

    I wrote a page on my website about that, in which I said that though I prefer not to use person first language, I’d much rather someone say “people with autism don’t need to be cured, because they’re not broken” than “autistics are trapped in an underending horror-story”. It seems to me that sometimes it’s so incredibly hard to find words that carry no offensive connotation about disabled people, mainly because the words refer to people considered inferior. I could easily see the word ‘idiot’ being used in a respectful manner to refer to profoundly delayed people, because it’s not so much the word itself that’s bad but how people use it.

  40. PS to Clay Kent:

    In case you haven’t read that part of the blog, the reason Kristina Chew &co do the GFCF diet for Charlie is that he was having these mystery rashes that went away when they excluded (at advice of a real medical doctor) those foods. It doesn’t make him less autistic; it makes him a healthier, less stressed-out autistic boy. My husband quit drinking milk becos it disagreed with his digestion. Doesn’t make him any less aspie. He’s the same autistic man, with a happier digestion.

    Thing is, sometimes those diets are called a cure for autism (just silly IMO) and sometimes they are actually effective to make an autistic person physically healthier (which would be good). Plus, I know several NTs -adults- who have those kind of food allergies. It’s just a physical thing.

  41. By the way, Kristina’s blog is not the only one I’ve seen that’s very view-from-above-ish, it’s just the first one I thought of that’s both very view-from-above-ish and not a lot of other things that would confuse the matter.

  42. “View from above”s often don’t see themselves as patronizing/condescending to their subjects–though it’s safe to say that by far most of them engage in the practice. A view-from-above does see himself as the better half of the pair, the more functional in almost all–if not all–respects; sees himself as the more intelligent, rational, stronger, adaptable, resourceful, sentient, etc. They view themselves as sitting “above” their peer.

  43. n,

    Thanks. I would agree that diets such as the GFCF can be beneficial, if the person actually is in need of it, i.e. has some sort of allergic reaction to foods containing Gluten/Casen (sp?). I approach those things with respect to Edith with the notion that let’s test her to see if she needs such a thing first,and not just implement it. The same is true of vitamin therapies and ABA. If Edith doesn’t need these things then I see no reason to put her through them. Oh, and I would agree that these things aren’t a cure. They only help to improve her quality of life (I’m not trying to suggest here that poor Edith is living in hell by any means). I’m not desperately looking for a cure anyway. She is autistic, that is her, regardless of whether she was born that way, or is a byproduct of encephilitis. The only condition she has that I would like to cured is her epilepsy. I would very much love for seizures to stop happening to her.

    What we are doing for Edith now is she attends occupational and speech therapy, out side of what little bit she receives at school, and she takes 3 different anti-seizure medicines that so far (I’m crossing my fingers are working) and she takes Risperdol to help keep her calmed down, less hyper which seems to have stopped the self injurous behavior, and has slowed down the instances of banging her head on the couch. Not that rocking back and forth on the couch is in itself a bad thing, but the force with which she used to do it was a bad thing. Still trying to repair the holes in the walls.

    So far, these things seem to be working for her. Albeit, she demands 100% attention all day long, but, she has come a long way from the constant crying, violent temper tantrums, self-biting, biting others, throwing things at peoples faces without warning, head banging on the floor and walls days. For that we are thankful.

  44. I don’t even think “view from above-ers” even necessarily view themselves as a “better half” of a pair, at least not consciously. I suspect that some probably don’t realize that they are coming across the way they are and in some cases, it might just be a person’s writing style that makes their writing sound very “above”-ish. Someone who tends to see everything and everyone as a potential metaphor applicable to something else will probably do this no matter what they’re writing about.

    And I had another thought: the “view from above” thing might be vaguely similar to the “stuff on my cat” problem, or those pictures where they have a cat or dog asleep posed with an empty liquor bottle or with some other object (and a tagline that tries to interpret the situation in the picture as something the animal is doing of its own volition).

  45. The “stuff on my cat” thing definitely provokes the same visceral reaction in me, but I don’t know if that means it’s the same or not. (I have a suspicion they’re related.) Of course, I also have that visceral reaction every time I hear of a child (and for cripes sake an epileptic child?) being put on Risperdal or other neuroleptics (only forced on autistics so widely because of aggressive, unethical marketing practices which I saw occurring right as they started but could do nothing to stop despite trying, and I do not believe that such dangerous drugs should be taken by anyone not old enough to consent except in medical emergencies such as severe vomiting where they are anti-emetics)… but at the moment I’m too sedated (lots of Benadryl, after a huge allergic reaction earlier this week) to get as worked up about that one as I should be.

  46. Yeah, there’s a reason I said “vaguely similar to” as opposed to “the same thing as”. There’s a constellation of things that seem to inhabit the same conceptual space, and that provoke similar reactions, but aren’t all exactly one and the same. But the relationship is there.

    Someone asked me recently what I thought of the recent “approval” of Risperdal for application to irritability in autistic children. I linked them to info on tardive dyskinesia and neuroleptic malignant syndrome and noted that I’d had a horrible reaction to the drug, and that I knew of people who had nearly died from it, and that the approval for something as vague as “irritability” would likely lead to the setting of a very bad precedent and even more kids were going to receive this medication inappropriately than already do.

    It seems to be tremendously difficult to impress upon people how serious these drugs are; they’re not the same thing as aspirin or even antidepressants or Ritalin — neuroleptics really are in a class by themselves with regard to being dangerous. I’ve encountered a few adults who claim to feel better on them and to not experience any undesirable side effects, but I don’t think this should set the precedent, especially not for children. I know of some people as well who have had their kids on neuroleptics because they were prescribed by doctors that were themselves either ignorant or not forthcoming enough with proper information about the risks — this in itself is a problem.

    My own experience was being given Risperdal as a *first*-line treatment for apparent “anxiety” (which I’m guessing was just normal-for-me autistic fidgetiness) and that was *completely* inappropriate. But I’m sure it’s not rare for things like that to happen.

  47. Reading more of autismland, to get a fix on what Kristina is doing with Charlie, and just why that could have seen us apply this views-from-above metaphor.
    Kristina’s ongoing care for Charlie, sees her creating and sustaining herself as an intensive caring presence: Charlie has this intensely caring and sustaining presence in his occurring; perhaps as his occurring. Kristina maintains her presence as a mainstreaming one, and autismland is part of seeing that done.
    In doing that, Kristina is not doing autism, or autism acceptance, or autistic-specific occurrence. Unless you view Kristina’s basic strategy itself, as autistically manifesting.
    The failing with our views-from-above approach to Kristina, was that it wasn’t sufficiently interactive: it was a coming-at-Kristina-from-outside-her-box; it wasn’t empathetic enough.

    To jump a bit. What Kristina offers Charlie (and it’s what all parents do) is a chance to become something like herself. That sees Charlie maybe not getting too much into what I know as the autistic: but Kristina is not me, nor I her; and that’s what the parent-child deal boils down to.

    Maybe what I’m getting at, is that the autistic approacher is also involved in this views-from-above outcome: where the limitation in Amanda’s initial blog, is perhaps to see herself as too subject to what others, such as Sachs are about. There is, perhaps, an interactive way to influence another involved in a views-from-above outcome.
    There is, in the spectrum of autistic approaches to things, some possibility of leaving yourself more powerlessly subject than is absolutely necessary.
    The corollary in this views-from-above notion maybe, that to preserve this interaction, and to avoid creating yourself as too powerlessly subject, you have to watch the architecture of how the notion is applied and used.

    I think that, having applied this notion/metaphor to Kristina, we have a responsibility to work it through to where we have the architecture for genuine interaction with her, and she with us.
    Or am I getting this all wrong.

  48. So, Amanda. I take it you are upset with me because my child is taking Risperdol? (“for cripes sake and epileptic child”) I checked out the site you referenced. It is obviously a site with a bone to pick. Risperdol, like all medicines has possible side effects and risks. We aren’t having any problems with it, she has taken it for quite some time now and she is being monitored.

    If not Risperdol, then what?

  49. I think that my ‘view from above’ detector is not as finely honed as other commenters (which is probably due to being NT, and thus not used to being ‘viewed from above’). But it still exists, and I still have some very visceral reactions; the worst one was to a book called ‘I’m not naughty – I’m autistic!’ in which a mother writes in the persona of her autistic son. Something about that just felt so wrong with that.

    I’m sure you’ve probably seen this; but Risperidal is now officially FDA approved for use in autistic kids:

  50. …it’s funny how people will decide that a drug has made you calmer when what it’s actually done is deteriorate the link between your ability to think of something and ability to do it (well, among other things).

    To me, that’s a pretty far cry from the state that I actually think of as calmness, but being crazy and all, what do I know. :-P

    I guess it’s assumed to be one of those WYSIWYG things.

  51. You were told it can make seizures worse, right? (I hope. I’ve run across people whose doctors mistakenly thought it made seizures better.)

    Like Zilari, I’m simply not sure if people realize the difference between “all meds have side effects” and what neuroleptics do to the brain over time. (As in, the longer you take them, the more possible it is to get side-effects, both cognitive and motor, that will never go away even if you stop taking them.) Which is why, like Zilari, I think that only people old enough to consent (and who are fully informed, as opposed to the sort of “informed” most people get) should be able to take them.

    The site may appear to have a “bone to pick,” whatever that means, but it is run by autistic people who were given such drugs, often, like me, against their will and while young. You will note, in the “all meds have side effects so what are these people complaining about” department, that there is no organization called Autistic People Against Anti-Depressant Abuse, or Autistic People Against Stimulant Abuse, or Autistic People Against Anti-Convulsant Abuse, or Autistic People Against Sedative Abuse, and so on. The reason there is an APANA is because these drugs are pretty much unique in how nasty they can be to the brain and how few people actually want to have taken them. Most autistics, even if they were given other drugs and didn’t like them, are unlikely to band together and form a group against the routine prescription of those drugs to autistic people, because they’re not nearly in the league of neuroleptics and there’s no consensus there.

    Whether I’m angry at you is irrelevant — I don’t think I am, but I have a real problem with the fact that these drugs are being recommended for use in children and that people are not aware (or at times not caring, I hope because they don’t understand fully because if they do that’s scary) of exactly the effect they often have long-term on the brain, and the specific risks for autistic people (and for that matter epileptic people), and the fact that these are pretty much like no other class of drug in this respect.

    It was only ever recommended for short-term use, too, but nobody ever pays any attention to that, or to why.

    By the way, I was given Risperdal among many other such drugs as a child, because I had pretty much every single “behavior” anyone ever wants to eliminate with it, and I still don’t think it was right, even though everyone around me seemed to think it was.

    I’ve talked to a lot of other autistic adults, and only a handful liked this kind of drug, and even that handful mostly preferred to be able to make their own choices about it (and of course are old enough to do so), rather than have it forced on them.

    So, I think it’s awful that kids are being put on it. No matter who tells me their kid is on it. If my best friend told me they were putting their kid on it I would still think it was awful.

    As far as “If not Risperdal, then what?” I would say I’d do nearly anything but give someone a neuroleptic, and get them off any neuroleptics as fast as safely possible to minimize risks (not all risks are of tardive dyskinesia, by the way, there’s also things like tardive dysmentia which is much harder to look for because it’s a loss in cognitive skills and has no obvious signs). (Unless they had uncontrolled vomiting, but that’s lower dose and shorter term.)  What do you think people did before Risperdal existed (and please don’t say ‘Thorazine’ or ‘Haldol’)?

  52. Colin: You’re mostly speaking in language that I don’t understand (I understand the individual words, but I can’t understand what they mean when they’re put in a sentence together), but, if I read you right, I don’t think that describing the views-from-above phenomenon as occurring, is the same as creating some kind of powerlessness. Oliver Sacks has never written about me, so I’m confused by your references there.

  53. Risperdal is not candy, and it’s not anodyne. I knew someone who–immediately after being prescribed just 2 mg daily–just stopped reporting to work at a mid-5 figure job. And then had trouble navigating her way around the block of her own neighborhood.

  54. I didn’t understand Colin either.

    No offense, Colin, but could you repeat the same idea in more everyday language? Perhaps my dazed-monday-brain and Amanda’s benadryl-medicated brain are not processing that text. And who knows, we might not be able to process it tomorrow either.

  55. Wow. In plowing through 58 comments, and spurred by something very cerebral I think Julian said, I determined to take it upon myself (and I’ve tried to do this before, ’cause I know exactly that type of writing, and I also become overwhelmed — though I don’t get nauseous; I get spastic, which is not quite as unpleasant as nauseous, so perhaps I’ve got an advantage) to identify exactly that “view from above” phemomenon on an elemental, syntactical level. Meaning, exactly what words in what order evoke what and why.

    Now, as the discussion is shifting, I’m reminded that there are other elements I’ll have to look for — elements of self consciousness in the writer. Not self-awareness, meaning acknowledging one’s own tendencies and applying them where it’s necessary in the context; but writing that’s coming from an apparent (apparent in the writing, naturally, for some reason) concern with how others are going to interpret the “tone” of the writing (meaning whether or not it sounds “nice”), or with how much authority the writer appears to have on the topic. I wonder if it’s the reverse of writing that’s often interpreted as “harsh” or whatever by folks who aim to please in their writing, and to be pleased by the response. (Interesting trick — many agree that if they read my writing very slowly, it sounds very calm and rational, but if they read it quickly it sounds demonic. I tend to use emoticons more than I care to for this reason.) And of course, all writing is surely a device, and is loaded with device — but with some writing the device is used to distract the reader from what the writing is saying, whereas the device ought to be used to just say it. Eh? Arrgh. That’s about as vaguely articulable as explaining why the vase looks better on the west end of the room. And I know nothing of vases.

  56. Colin’s comment was a nice warm-up exercise for my syntax endeavor, actually — it seems he’s making gerunds (“X is an __er, is an __tion”) out of what I believe should be simpler noun-verb combinations. Though I don’t get it either. Colin, please do try again.

  57. I reread Julian’s comment, and noticed the word “veneer” in there.

    Much of reading a view-from-above depiction of someone’s life, is like watching the person through a thick, gelatinous, shiny, slime that distorts things. (May even distort things to look “good,” but only in a superficial sense of good.)

  58. Amanda, n.
    Not being understood happens to me all the time. I’ll articulate what I’m seeing and thinking and feeling: and, some of the time; get zero communication and comprehension. So, down to me, and no offence taken.
    It’s what I see as my autistic aspect. Formally, I’m dyslexic.

    I teach students on the spectrum, and those who mainstream schools in our area have no real provision for. So, for years now, all I’ve really thought about has been the autistic.

    In working with my students, what most concerns me, is the thinking and feeling they are doing. Amanda’s blogging has amazing value, because it reveals the scale and quality and detail of the person that can be going on, behind for example non-verbal and passive presentation. I just assume there is an Amanda behind or within every student.
    What I look for is just how the student is controlling, or controlling for their environment: through the thinking and feeling they present to me; thinking and feeling with which they deal with me, because as a teacher I’m one of their problems, very often. And I look out for me doing just the same: I’m having thoughts and feelings; and that allows me to cope, and perhaps cope with them.

    Now, when I have thoughts and feelings, I know that I’m not just seeing the world, I’m actually creating my world. What my world is, changes as I articulate thoughts and feelings. So, if I come up with the idea of people who use “views-from-above”, or use that idea as given me by Amanda: then I know that I’m not simply seeing something, that is there to be seen; I’m actually doing something much more complex, and creating me a world, and controlling my sensory environment.
    Any idea or feeling I have about my students, does exactly that.
    When I do that, I have to be very careful not to lock them into my comprehension, my understanding, my terms and concepts. My thoughts and feelings should just control my “space ship”, and shouldn’t interfere with what they choose to do.
    A while back I read an Amanda-blog, where the people Amanda was with were talking in a certain terms, and Amanda ended up banging her head of a wall in a corner: that was those people securing their own “space ship”; but what they used to do that, had a terrible impact on Amanda.
    My teaching colleagues will often use conventional ideas about the autistic, when discussing students: and that use of these ideas, will have something of the effect on me, that was had on Amanda; how it works for me is different, I’ll just blurt out my rejection of what is being said, and with a lot of emotion. My perspectives have a lot in common with Amanda’s: and having blurted out in a mainstream staff meeting, I have to back up my rejection; and there is always the risk of not being understood at all. What I’ll be saying to my colleagues, will be along the lines of what Amanda points to when she speaks of views-from-above: I’ll be saying that if they insist on speaking and thinking about our students in they way they are doing; then they should not be surprised when things don’t go well for our students.

    But, if what I’m doing with my colleagues is to work, then I have to not do what I’m seeing is wrong in how they are viewing their students: I have to use thoughts and feelings in doing this with them, that leave them free, and don’t interfere with them; I have to leave the space for them, that I want them to leave for our autistic students.
    So I’ve had to become very disciplined about using all my thoughts and feelings, just as tools to control my “space ship”: and to stop myself imagining that my ideas and thoughts can capture the other person’s truth or reality; what I say, or think, or feel, can never do justice to who and what they are.
    My thoughts and feelings control my sensory environment and process, and do very little else: and, when I do that, the stage is left clear for my students to come through.

    I think that Amandas writing is good and necessary. Coming up with articulating around the metaphor of views-from-above, is just valuable. But, there is a degree of overrun in Amanda’s use of the metaphor: and maybe it was demonstrated in speaking of Kristina; and maybe what the overrun blocks, is the positive use to which Kristina could be putting what impacts adversely on Amanda. Maybe Kristina would be better positioned to understand and embrace just why this impact was had on Amanda, and perhaps take on board something to Charlie’s ultimate benefit: if what Kristina was doing through this same view-from-above, was able to be endorsed affirmatively.
    The impact on Amanda and others has to be recognised and controlled out: but equally, just why Kristina is using what impacts so adversely on Amanda, and to what (good) effect, has to be acknowledged too.

  59. Evonne,

    You might one to calm down and take a deep breath. You’re ranting.


    I will run your concerns by Edith’s psychiatrist. I find it hard initally to think that she would wish harm or want to play around with Edith’s life like that, if what you are concerned about is the norm and not the rare exception. But who knows? Thanks

  60. Growl. Thank you again, Amanda. (Like I said, read fast = demonic. Or perhaps it’s something personal. Clay, I don’t know you, nor you me. But I believe you meant “want” instead of “one”. *You* calm down.)

    Yup, it was “veneer” in Julian’s comment that got me wanting to dissect syntax; that’s about the perfect word. Now I’ve gotta figure out what specific syntactical device is used to create veneer.

  61. I sure hope everyone’s reading stuff I and others have said correctly, because I can’t even remember half the conversation at this point. (Benadryl again. Doing wonders to my brain. But also doing less sarcastic wonders for my lungs, so I’m not complaining too much. I’d rather be able to breathe and not think as well as usual, than the alternative, and the alternative is still a little too close in my memory to make the Benadryl haze seem worse.)

    I don’t think I remember saying anything about the doctor wanting to put someone at that much risk, many doctors are not well-educated on the risks of neuroleptics, because over the years they’ve historically been run away from because of the perceived benefits. (The risks have been that way slow to be studied and often even when studied are not always discussed with everyone. I was the one who had to tell my psychiatrist when Sertindole/Serlect was pulled, for instance, because he didn’t even notice.) So, it’s not a matter of malice, as much as ignorance, and many of these things have not even been studied long-term in children at all, and barely long-term in anyone at all.

    As far as positive functions of view-from-above… I think it’s possible to carry out everything genuinely positive that a person can do, without doing the view-from-above thing. Dave Hingsburger is a good example of that, because he does a number of positive things in his writing, and I have a large collection of his writing spanning quite a long period of time. It started out more view-from-above than it is now, and has gotten less and less so over time. Nothing good has been lost in losing the view-from-above standpoint, only some “seeming goods” have maybe been lost, and a lot has been gained by losing that standpoint. I don’t think there’s anything intrinsically useful about that standpoint, that cannot be accomplished some other way, and I’m not even sure there’s anything intrinsically useful about it to begin with.

    I hope I’ve covered several things there, I honestly can’t remember what I was doing ten minutes ago.

  62. Hi, Clay.

    I’m terribly curious about something. Did you give Evonne’s post a quick read, a slow read, or both? Because I didn’t percieve any ranting, if by ranting you mean either angry or irrational. I would really like to know if this ties in with what she mentioned about people who read fast seeing her as angry, and people who read slowly seeing her as calm. No condemnation, just honest curiosity.

    Because Evonne and Amanda have both mentioned being percived as angry when they didn’t intend to express anger. And Amanda wrote and interesting post on I’M NICE signals in writing that had nothing to do with the actual message being sent. I’m thinking that skimming and quick reads convey more of the (percieved) tone of the piece, and slower reads convey more of the facts? So someone not using I’M NICE signals would come across as more angry-seeming to people who were reading more of the tone?

  63. I’m curious too, actually, that was something I now remember I thought of when I read Clay’s response to Evonne, was Evonne had just mentioned the quick-read vs. slow-read thing.

    For what it’s worth, I often alternate quick and slow reads (it takes a long time for me to understand what I’m reading, so I rarely do single-reads of any speed) but I rarely have the response a lot of people do of viewing someone I am reading as angry, unless they put some serious indicators of anger in there. (Not just absence of I-am-nice signals.)

  64. Evonne,

    Thanks for providing me the easy way out. It says alot about your graciousness, but, I can’t take the easy way out. I am going to have to eat a heaping slice of much deserved humble pie. I misunderstood what you were saying in comment 59 and thought you were referencing my comments about understanding Amanda to be upset with me for giving Risperdal to my daughter, when if I understand you properly now, you were helping to answer what causes the “view from above” syndrome that appears in some authors writings regarding persons with autism, or persons with disabilites.

    Please accept my apologies. I know it may not look it, but I’m really not hear to offend, but rather to learn. I believe that if I just read what “experts” write, and what other parents of austistic children have to say, that I won’t be getting the whole picture. Obviously, autistic people themselves can be the most authoratative, hence why I am here. You are right I meant “want”, “one” was a typo ; )


    I hope this clears up any curiosity issues for you.

    I apologize to all.


    We weren’t told that Risperdal would reduce the seizures that Edith had, nor were we not told that a “possible” side effect could be lowering Edith’s threshold for seizures i.e. causing seizures.

    In fact, we have been informed all along, even prior to Risperdal, when we were just dealing with anti-seizure medicines, that even medicines used to control seizures can themselves cause seizures.

    It is my understanding that all of this is a matter of finding the right medication (or combination thereof) that can be gradually raised to the correct level to successfuly control the tendancy for seizures to occur. It can be nerve-wracking for parents, but it is what is is.

    For example, Edith was doing really well with Lamictal. But, as the level started being increased to correspond with her age, weight, whatever factors that drive that, Edith began having a lot of complex partial seizures, absence seizures and finally a big generalized clonic tonic seizure which landed her, once again, back in the hospital. The result was that the Lamictal dosage was scaled back and Keppra was added. After the last really big seizure, back in August, Dilantin was added. With the exception of a 13 minute clonic tonic seizure which ended of its own accord a couple of weeks ago, Edith has been seizure free. We have our fingers crossed.

    Like I have said before, Edith’s epilepsy scares me. Her autism, ADHD, possible bi-polarism doesn’t. I don’t view her autism has something to be cured. I’m not even sure it could be. I see it rather as something to learn about, and if there are things that can be done to help her (i.e. eliminate self-injurous behavior, help her to be able to communicate her desires, heck, communicate period,) then it is our responsibility as her parents to pursure it.

    Zilari, I believe, mentioned something about the dangers of prescribing Risperdal for “irritability” in children, especially the dangerous precedent it would set, and I agree with her/him whole heartedly! However, there is a large difference between irritability, (“grumpiness”, snapping at people), for instance, and violently bashing ones head on the floor, or the couch so hard that it knocks holes in the wall, biting one’s arms, biting others, throwing things at peoples faces without warning, throwing objects period, climbing furniture, ransacking room, and flying into complete all out violent rages (for no apparent reason).
    That is the conditions that we have had to deal with for Edith prior to Risperdal.

    It was very confusing, and scary. We first started seeing this behavior after she returned from the hospital from her contraction of encephalitis. At that time they started prescribing anti-seizure medicine, because she began having prolonged seizures that could no longer be called ‘febril seizures’. We at first thought this behavior was a side effect of the anti seizure medicines she was taking, maybe it was, but obviously we now know that those medicines were’nt the sole contributer.

    After several years of being ignored by our neurologists (that’s right two different ones) regarding Edith’s behavior we finally got refered to a psychologist who diagnosed her with autism.

    Her psychiatrist tried a few other medications including Ritalin, which only made Edith more hyperactive than usual. Finally, Risperdal was prescribed. At one point it was removed and replaced with Dextro-amphetamine, which did nothing. Once Risperdal was resumed, those violent behaviors she had, as well as, a large portion of her hyperactivity were eliminated.

    Prior to this medicine, it was clear that Edith was in torment, hurting herself as well as others, spending large amounts of time crying. She is now a much happier child and it will be much easier to focus on her education.

    Amanda, I don’t believe that you are in any way accusing Edith’s psychiatrist of purposely trying to harm Edith. I do appreciate you, as well as everyone else who has, providing me the negative factors surrounding neuroleptic drugs such as Risperdal.

    It is now my job to run these concerns by Edith’s psychiatrist. It may very well be that another medical solution will be needed. Or, Risperdal might be the solution for Edith

  65. Concentrating on what (I think) Amanda has been calling visceral reactions: and taking them to be somewhat involuntary responses; where our capacity to control them out, can be less than needed to stop them.
    And tying in to Clay’s daughter’s epilepsy (and autism): and Evonne’s posts; and Clay’s reactions and responses to these posts by Evonne.

    Taking Clay’s daughter’s epileptic fitting as an extreme visceral reaction.
    I would see Clay’s response to Evonne’s post (seeing it as ranting, and expressing that seeing in the public domain) as connected with his daughter’s epilepsy. Clay has a blog attacking liberal politics in America: what he saw and expressed about Evonne, is something Clay does much more habitually and routinely.
    What “fits” out for Clay’s daughter, Clay works out in his politicking.
    The important thing is, that how Clay handles what viscerally impacts him, is more personally controlled than in his daughter’s fitting.

    Evonne is actually something of a lovely dissembler: she breaks up what is incoming, and what could provoke a visceral reaction, as it is coming in; her concern with syntax is both beautiful and effective.
    Amanda is a deep-plane analyser: which sees her developing powerful analytic tools to control and defeat what provokes visceral reaction in her; she grapples with the concrete on the ground.
    Evonne’s dissembling, running all the time, is what Clay picked up on as “rant”. An irony is that both she and Clay deal with syntax: Clay being more orientated to syntax which (he sees) as expressing politically.
    Amanda’s analyses see her (autistically) taking on what is so infinite, that the gearing of what she does acts back regularly; and the universe she creates for herself (in countervailing the concrete) acts back on her, as visceral response.
    If Evonne is a butterfly, running a hyperspeed dissembling metabolism: then Amanda is King Kong; and sometimes she gets cornered in the city built by others. If Evonne is in the air: and Amanda is in the concrete; then Clay is in the waters of politics (and maybe religion).

    I would see us all (including Clay) as being and controlling the autistic.
    When that control is insufficient, then we get what presents viscerally: something overwhelms the self, overwhelms personal control.

    If Clay’s daughter is to gain control over her fitting, and channel what currently ends in fitting, in some other other way which lessens or removes that fitting: then she needs training in what can head of visceral outcome; she needs tools and instruments to do this.
    All of us, dealing with the autistic as Clay’s daughter does, have such tools and instruments. We all succeed in dealing with what can erupt viscerally, and we all fail. Collectively we have a great body of experience and wisdom and skill.

    But, if any of this is to benefit Clay’s daughter, then we have to be actively collaborating: and, dealing with the autistic as we all do; and being concerned to head off the visceral as we all are: that collaboration means going pretty deep, into ourselves.

    The priority, in my opinion, given that we are all pretty far down the road; has to be those in the position of Clay’s daughter.
    Get it right for her, control her fitting better: and how life is going to shape her can be brought under better control.
    I sense that, collectively, we could offer Clay’s daughter something useful.

  66. Colin: Seizures are not generally emotional reactions to anything. I spent the better part of a year being misdiagnosed with “emotional reactions” when I started having a new type of seizures (atonic and myoclonic, where previously I’d only had complex-partial and absent) because of the introduction of a neuroleptic drug. Trust me, it was not helpful.

    Clay: I’m well aware of all the “behaviors” that people use to justify neuroleptic drugs. Because I’ve been on them myself, for the same (or, quite possibly, “worse”) reasons. (It gets kind of irritating to say that I don’t think these things justify neuroleptics, only to be treated — every single time — to a detailed description of someone else’s behavior, the assumption being that, apparently, I haven’t heard it before, or just didn’t realize people’s behavior could be that “awful”, or something, and that as soon as I hear the actual behavior that it was prescribed for, I’ll suddenly think it was justified.)

    I have a real problem with the idea that neuroleptic drugs are the only, or even best, response to someone behaving that way. In part because people don’t do those things “for no reason,” in part because I don’t think behavior should be medicalized (and therefore considered something to “treat”), and in part because I don’t think neuroleptics should, except in their genuine medical uses, be given to people unable to truly consent.  Also I don’t like the idea that by behaving in certain ways, people lose the right to not have their brain invaded by that particular set of drugs.  (Because that would mean that the aftereffects of forced drugging that I deal with are okay, and they’re not.)
    For reference, all that these drugs were ever truly recommended for, even for that — not that I agree with it — was very short-term use, less than a year, possibly less than six months, while some other means of dealing with things was found. Nobody ever seems to follow that, either.

  67. Colin,

    I have to disagree with your analysis of me. My political conservative blog has nothing to do with my daughter’s epilepsy. On my blog I express my conservative political views, just as those with politically liberal blogs express their views. I am not the only one out their with a conservative blog, nor is my rejection of liberal viewpoints unique to me. (ref. But, enough on politics, since it doesn’t belong here.


    You said:

    “Clay: I’m well aware of all the “behaviors” that people use to justify neuroleptic drugs. Because I’ve been on them myself, for the same (or, quite possibly, “worse”) reasons. (It gets kind of irritating to say that I don’t think these things justify neuroleptics, only to be treated — every single time — to a detailed description of someone else’s behavior, the assumption being that, apparently, I haven’t heard it before, or just didn’t realize people’s behavior could be that “awful”, or something, and that as soon as I hear the actual behavior that it was prescribed for, I’ll suddenly think it was justified.”

    If you are irritated by my description of my daughters condition, I apologize. I am not particularily trying to justify anything to you. I shouldn’t have to. Right? Nor, was I coming from the veiwpoint that maybe you had never heard of what my daughter has been going through before either.

    You don’t approve of drugs like Risperdal being prescribed to people who are too young to choose them for themselves, except in the rarerest of circumstances. I got that point from one of your earlier comments. Believe me, I’m not trying to convince you to change your viewpoint. It’s yours and your entitled to it. Just as I am entitled to mine.

    As for me, being Edith’s parent, I don’t wait to get Edith’s permission to give her medicine. That would be absurd since, she is only 4 years old and is incapable, most probably, of understanding the question to begin with. She also, more than likely, lacks the sufficient maturity to make a sound decision regarding medicine in the first place, even is she could understand the request.

    As I’ve told you before, I appreciate your concerns regarding Risperdal, as well as the feedback from others, and I don’t plan on just ignoring your viewpoint. I will raise these concerns about Risperdal with her psychiatrist.

    With regard to Risperdal being used for “behavior”, as someone has pointed out already in a earlier comment in this thread, the FDA has authorized the prescription of Risperdal to young children who not only are autistic, but also those with a bi-polar condition, which is what Edith’s psychologist believes her to have, as well as being mildly autistic.

    All I mean to say by this is, that the decision by Edith’s psychiatrist to prescribe Risperdal for her is not to “eliminate bad behaviors” that are troubling or bothering her parents.

    It would not be correct to assign “naughtiness” to her violent, and self-injurous behavior. Nor to characterize it as embarrasing and non acceptable public behavior. If one could get away with that as a true characterization of her behavior, then simple discipline would correct the behavior.

    I don’t consider a drug like Risperdal to be a form of discipline.

    Again, I’m not trying to irritate or convert you to my viewpoint. I respect your viewpoint, and have made it something to address with Edith’s doctors about. I want the best for Edith, and I know full well that I am not qualified to be the end all for knowing whatever that may be. I have a degree, but it’s not in medicine or psychiatry.

    But, enough said on this topic. I’m going to focus on reading more of your blog posts, as well as try and understand “view from the top” so that, if I can ever help it, not commit such a faux pas (sp?) myself. I think I’m on the edges of understanding what you are alluding to. I don’t want to remain this shallow on it, because I sense something deep being addressed here.

  68. Neuroleptics are more (in seriousness) close to ECT or psychosurgery than they are like Penicillin, Tylenol, or even Ritalin, and I don’t think calling it “medication” (in the sense that most parents can decide what medication to give a child) does anything more than cloud the issue and make it sound the same as the decision to give Penicillin, Tylenol, or Ritalin.

    If the psychiatrist was willing to prescribe it to begin with, I doubt she’ll do more than dismiss the concerns of me and other autistic people much the way you did at first.

  69. Colin, when Amanda says that the (self-injuring, violent) “behaviors” of Edith are not “for no reason”, I don’t think she’s implying that Edith is being naughty.
    I think the implication is that there is more likely something going on that Edith is reacting to, something is bothering her.
    I think Amanda means this, because (as she has written in other posts and other articles) her own self-injuring or “violent” moments were (are) often out of frustrations or overloads or other kinds of stresses… or at worst, in self-defense or where she perceived self-defense was needed.

  70. “n.” — pretty close to right, except that they have not always been “moments”. I spent years doing that kind of thing on a very regular, sometimes constant basis, but there were always reasons, beyond the brain-centered pathological medical out-of-“nowhere” reasons (which ranged, besides autism, from childhood bipolar to septal rage syndrome to childhood schizophrenia to vague “chemical imbalance” to “well she’s got an abnormal SPECT so it must be something about that” and so on and so forth) that people were told about it. I don’t like the reduction of behavior like that to something medical.

    Clay — at first, you said, “I checked out the site you referenced. It is obviously a site with a bone to pick.”  And then basically went on to dismiss concerns about side-effects as if they were the same as concerns with any other kind of medication.  (One reason they’re different, by the way, is not just in scope, but that some of the motor inhibition and so forth is not only a “side” effect but actually how the drugs affect behavior to begin with.)

  71. Amanda said: “Seizures are not generally emotional reactions to anything.”
    Depends on what we mean by emotional. There might be a range in what we mean by emotion.
    I agree with you, and accept n’s point about Edith: when you both point out that there are reasons, good causes if you like, and in a person’s setting or context.
    It also depends on what we mean by seizures. So there might be a spectrum of seizures.

    My sense is, that emotion is centrally involved in seizures.
    Einstein came up with the idea of a time-space continuum: and it seems to me that thought and emotion have the same relationship; the two form a continuum, and the two are only separate as abstractions.
    I think that thought and emotion, the whole range of what makes up a person, is involved in the range of seizures.

    What you, Amanda, here on your blog, articulate critically as thought, still has crucial emotion attached to it: and when these same thoughts were moving in you inchoately and unarticulated, because you remained non-verbal, and because of disposal others took over you in that time; then great emotionwill have accompanied that experience.
    If you went into seizure as some response or reaction to all that, then emotion would seem to figure hugely: the emotions, at the least, associated with being powerless, while in the “hands” of those whose comprehension (of you) you absolutely reject.

    Thought often is an attempt to avoid or control emotion: but the continuum of thought and emotion, entails that emotion is always tied in to thoughts; and that, under certain conditions, thought can unleash that tied in emotion.
    My sense is that a category of seizures, and that might well include the epileptic, critically involve just such a mechanism.

  72. I don’t consider thought and emotion separate, but I continue to absolutely maintain that seizures are not the same thing as emotions (some can occur in areas of the brain that provoke emotion, and they can be scary, but that’s different than seizures being emotions, any more than the fact that people laugh at fart jokes or become annoyed at smelly farts makes farts emotions). Seizures are no more intrinsically emotional by nature than farting, and I seriously hope that your next reply is not going to be to tell me that if I’ve ever farted while powerless then farting is an emotion too.

    Your theories of epilepsy remind me somewhat of psychoanalytic notions of autism — and unlike many of my fellow psych survivors, I have no more love or respect for psychoanalytic theory than biopsychiatric theory, given that I have spent considerable time in psychoanalysis (read: attempted brainwashing) by people who, much as you do, attributed emotional significance to all kinds of things that didn’t warrant it. I don’t need you telling me what I am feeling, or what biological events in me are caused by emotion, any more than I needed it back then when drug toxicity levels were never checked by people who were so sure they knew the “real” cause of seizures.

  73. Clay said: “I have to disagree with your analysis of me. My political conservative blog has nothing to do with my daughter’s epilepsy. On my blog I express my conservative political views, just as those with politically liberal blogs express their views. I am not the only one out their with a conservative blog, nor is my rejection of liberal viewpoints unique to me. (ref. But, enough on politics, since it doesn’t belong here.”

    We will continue to disagree on this one.

    It is noteworthy that the item you focus on exlusively, is this matter of your active politicking.

    Have a look a Kevin Leitch’s website/blog “Left Brain/Right Brain” as having an approach and perspective different to your ” In My Right Mind”.

    I’m not in any way choosing my politics over yours, or Kevin’s over yours.
    It’s just to start exploring how different people’s total approach and person’s can be.

  74. I think there may be a somewhat indirect connection between emotions and seizures? I’ve done some reading on this, and I used to know someone with (initially untreated) epilepsy, who was prone to frequent seizures. But I’m not very solid on this, so tell me if I’m wrong.

    From what I’ve gathered, exceptional psychological stress and high emotions cause certain chemical changes in the brain which increase the probability of seizure in people with epilepsy. So if someone with epilepsy is under exceptional emotional stress, they’re likely to have more frequent seizures than average. Stress reduction could reduce the frequency of the seizures among people with epilepsy, but not eliminate them. The cause would still be basically physical, and in order to have epileptic seizures, one would need certain physical abnormalities of the brain. Is that right? Or am I misinterpreting thing?

    And Colin, you seem to be defining and interpreting people symbolically. A lot of people here have been defined, interpreted and treated as symbols by others, to the exclusion of their own understanding of their selves. It’s not usually a pleasant thing to be subjected to. You might want to consider what you’re communicating.

  75. Amanda,

    You said:

    “Clay — at first, you said, “I checked out the site you referenced. It is obviously a site with a bone to pick.” And then basically went on to dismiss concerns about side-effects as if they were the same as concerns with any other kind of medication. (One reason they’re different, by the way, is not just in scope, but that some of the motor inhibition and so forth is not only a “side” effect but actually how the drugs affect behavior to begin with.)”

    Exactly how do we go from “I checked out the site you referenced. It is obviously a site with a bone to pick”


    you “dismiss the concerns of me (Amanda) and other autistic people much the way you did at first.”?

    Amanda, are you trying to say that simply because I have pointed out that the site you referenced has an agenda, that that means that I am dismissing autistic people and their opinions all together?

    Geez, I sure hope not. I wouldn’t be here if your opinion didn’t matter.


  76. Colin,

    You said:

    “We will continue to disagree on this one.

    It is noteworthy that the item you focus on exlusively, is this matter of your active politicking.

    Have a look a Kevin Leitch’s website/blog “Left Brain/Right Brain” as having an approach and perspective different to your ” In My Right Mind”.

    I’m not in any way choosing my politics over yours, or Kevin’s over yours. It’s just to start exploring how different people’s total approach and person’s can be.”

    Dude, you are still wrong about so many things regarding me.

    First off, just because I have a blog about conservative politics, doesn’t mean that that is all that I am. You can disagree all you want, and so I will leave you in your fantasy world.

    Second, Kevin’s “Left Brain/Right Brain” has nothing to do with my blog’s title of: “In My Right Mind”.

    It is a coincidence, and nothing more, that there happens to be the presence of the work “right” in my blog’s title, and “right” in Kevin’s blog title.

    Kevin’s blog is about autism.

    Mine is about conservative politics.

    I fail to see the connection between the two.

    You said:

    “I’m not in any way choosing my politics over yours, or Kevin’s over yours. It’s just to start exploring how different people’s total approach and person’s can be. ”

    Colin, I don’t really care about whether you agree with me politically or not, and I have no idea what Kevin believes politically, nor do I care.

    Political views are irrelevant here in Amanda’s blog.

    Unless I’m mistaken, “Autism” is the topic here.

    No offense, I am open to what you feel and think. I just think that you are confused as to who I am.

    Dude, I could also blog about “The Beatles”, “Badfinger”, C.S. Lewis, Star Trek and a host of other things if I wished.

  77. Clay – Just a few thoughts on the Risperdal.

    First off, it’s important to remember that neuroleptic is just a less scary way of saying antipsychotic. I’m not quite sure when then the term neuroleptic came into vogue but I am very aware that it doesn’t inspire the same knee-jerk shock reaction that antipsychotic does.

    Risperdal is considered an atypical antiphychotic. While you may be aware of the possible side effects of hyperglycemia and diabetes you may not know that the reason for these side effects are generally due to a decrease in insulin sensitivity.

    Many (if not most) antipsychotics raise prolactin levels. Increased prolactin levels can cause pituitary tumors. Risperdal raises prolactin levels more than most other antipsychotics.

    While Risperdal is used as a “mood stabilizer” in bipolar patients it has only shown that it can control mania. I’ve not seen any evidence that it can help ease depression or help to pull the depressed patient out of that dark pit. And, like most of the atypical antipsychotics, while it is an effective anti-manic agent it can also induce mania.

    Now, all that said – it is possible that Risperdal is the best med option for your daughter. The fact of the matter is that nobody really understands the chemistry of the brain, they understand bits here and there and that med x works for symptom z but they often don’t know why.

    The best thing that you can do (or any of us for that matter) is to educate yourself about the meds and then take your questions/concerns to your Dr.

    Here is one of my favorite med references. While nobody at the site is a doctor, they have managed to sum up the patient info sheets along with information from people that have actually taken the meds. If you want info on any med that is used for a mental illness, you’ll find it there.

    Best wishes to you and your family.

  78. J said: “And Colin, you seem to be defining and interpreting people symbolically. A lot of people here have been defined, interpreted and treated as symbols by others, to the exclusion of their own understanding of their selves. It’s not usually a pleasant thing to be subjected to. You might want to consider what you’re communicating.”

    J, could you say a bit more about what you mean by “symbolically” and “symbols”?
    Maybe if your could show me how and where I’ve been doing that.

    I’ve got a sense of what you might be seeing: but that sense isn’t strong enough to be really useful; maybe you could help me out there.

  79. J: Yeah. There’s an indirect correlation between a whole lot of things and emotion. Phrasing it the way it was phrased before, though, is equivalent to saying essentially that if someone has multiple sclerosis then it must be because of an emotional thing, just because stress can be implicated (sometimes) in the onset. (And it used to be considered possibly emotional, before they knew the real cause.)

    Clay: My blog isn’t specifically about autism, it’s also about disability politics in general. I happen to be an autistic person, so autism gets into it. But, if you’re defining politics in a narrow “left wing versus right wing, electoral politics” sense, then yeah that part is often irrelevant here. But politics in a broader sense are not irrelevant.

    I’m still not sure what you mean by “has an agenda”. All organizations have agendas, generally when people point out that a group “has an agenda”, though, it’s to lower the perceived credibility of that group slightly — they “have an agenda” and therefore can’t be entirely trusted, or somesuch. Not sure what the point of mentioning that a group had an agenda would be, otherwise, because all groups of any kind have agendas of one kind or another.

  80. And, girl88: Neuroleptic means “nerve-seizing” and was one of the fairly early names for these drugs. “Anti-psychotic” on the other hand is a word that appears to have happened later on, to describe them in terms of the (ostensible) usefulness to specific people, instead of in terms of the rather disturbing effects they had on the body. “Neuroleptic” came back into fashion later on when people were trying to point out the things these drugs did to people, rather than that they were supposedly “useful” (especially used by people who were diagnosed with psychosis but found that instead of, for instance, reducing hallucinations, these drugs just made them too out of it to act on them, which is relatively common).

    (At least, that’s as far as I remember it and my memory may be fuzzy.)

  81. Amanda,

    You said:

    “But, if you’re defining politics in a narrow “left wing versus right wing, electoral politics” sense, then yeah that part is often irrelevant here. But politics in a broader sense are not irrelevant.

    What? What is politics in the broader sense? The dictionary definition of politics?

    As for defining it in “the narrow left wing versus right wing” what else is there? Middle of the road? Wishy washy? Undecided? Tell me what to think? What is popular? etc.

    Whatever. As I said, I doubt politics belong here.

    Point taken regarding disabilities, and not just autism.

    Amanda, the phrase “has an agenda” means has a mission, a particular viewpoint. If you think that saying group X has an agenda (Y) is a way of dismissing them then that is your take. However, that is merely ignoring group X, because they have view Y, instead of view a, b or c.

    I don’t look at it that way.

    I do, however, call a spade a spade. If group D believes H and has H as it’s agenda, then I will identify group D as having agenda H.

    Is there a problem with that?

  82. Broader definition of politics, yeah some of the dictionary definitions fit actually: Social relations involving authority or power, also the process and method of making decisions for groups, or the distribution of power within a society.

    Which is much more the point of my blog than, say, medicalistic interpretations of what “autism” (or any particular other disability category) means. (And if you’re here for that, you’re likely to get incredibly frustrated here. That’s generic-you.)

    With regard to things other than left-right, what bothers me about that, is there seem to be a broad variety of views that people are encouraged to take on issues, not because of actual analysis of the issues, but because one “side” or another says that’s “our” issue.

    Which, for instance, means that somehow, in the way most people handle politics in this country, because I believe strongly in social programs, for instance, I am also automatically supposed to believe in euthanasia, because both are regarded as “progressive causes” for some bizarre reason. Meanwhile, in order to be pro-life you’re supposed to be a fiscal conservative, and in order to be conservative in most things you’re not always allowed to believe in social programs, and so on and so forth. And for that matter heaven help you if you think the idea of abortion (or anything else) is a little more complex (to read “complex” don’t read “wishy-washy” or “moderate”, read “complicated and needs to be looked at from several angles to understand it”) than a pro-choice or pro-life soundbite version.

    That’s what I mean by narrow, the issues seem to be divided in a weird way that doesn’t connect to the actual analysis, but more to choosing sides like a football team. If you choose the “team” who believes in one thing, you are supposed to agree with them in all other things, even if, again, the beliefs don’t all hang together under your analysis of the situation.

    Probably people in countries with more than two political parties can see this a little clearer than Americans can.

  83. As far as “agendas” go, all groups have an agenda, what I’m asking is, why mention it with that group and no others? You have not mentioned the fact that the Autism Hub has an agenda, even though it has a clear one, and you certainly haven’t referred to us as a group with a bone to pick (which is actually, rather than “has an agenda”, what you said).
    For that matter, I think you’ve also characterized this blog specifically as having no political agenda, but it does have one (as its main premise), and not a particularly wishy-washy one, despite the fact that people with (and without) this particular political agenda can be found among pretty much all political parties.

  84. Amanda,

    I don’t look at politics as picking teams, nor do I just follow what one party stands for lock, stock and barrel. I pretty much follow what I believe in. There might be people out there who do just identify themselves as “part of the team”. I suppose that’s ok for them.

    As far as agendas go, what is “Autism Hub”? How is this blog political? What does politics have to do with autism?

  85. The Autism Hub is a group of autism bloggers who are positive towards the idea of being autistic.

    All disability is political in nature. Even what counts as disabled and what counts as non-disabled has a lot to do with who has and does not have certain kinds of power, and who can and cannot demand that the environment be reshaped entirely in the favor of people like themselves, who is and is not counted as making a contribution to society, and so forth. This in turn shapes ideas about what is to be done about disability (which is not an individual trait, but the interaction of an individual and the environment).

    A statement that autism needs to be cured is political. A statement that autism does not need to be cured is also political.

    This post for that matter deals with who has the power to represent disabled people in which ways and get listened to, which is also political (as true analyses of power are, by definition). If you’re unacquainted with the politics of disability, it’s probably better to get acquainted with it than to wait for me to come up with a full explanation.

  86. Clay, Amanda never said you dismissed autistic people. She said you at first dismissed the OPINIONS of autistic ppl (including her) who disagree with using neuroleptics.

    It was a syntax thing.

  87. Clay, Amanda never said you dismissed autistic people. She said you at first dismissed the OPINIONS of autistic ppl (including her) who disagree with using neuroleptics.

    It was a syntax thing.

    For what this blog is about, you can read this text, which is linked from a capital D near the photo collage at the top of the blog header.

    I am not very good at politics myself but i do get how politics relates to autism, in the sense that we may protest that more of what is wrong in autistic people’s lives is due to our (mis)treatment by society, than to our different brain-functioning.

    BTW: Autism Hub has the following mission statement:
    “Autism Hub promotes diversity and human rights, with ethics and reality as the core guiding principles; aspects include empowerment/advocacy, acceptance, and a positive outlook.”

    Sounds kinda political to me.

  88. n,

    You must be confused, as I have not “dismissed the OPINIONS of autistic ppl (including Amanda and anyone else)who disagree with using neuroleptics”.

    Please read all of my last comments. You will see that I am grateful to hear the other points of view regarding Risperdal and plan to address these concerns with Edith’s psychiatrist at our next appointment.


    Ok. I get what you mean by “politics”. You are using it in a more general since than what I usually think of when I address the topic.
    Autism Hub sounds interesting. I will have to check it out.

  89. Ahhhh, thank you for the info on the word Amanda. I honestly don’t recall seeing “neuroleptic” used until the last 8-10 years. Now that I’m thinking about it, I don’t think I came across that word until I started doing some research on autism. My pdocs always held the antipsychotics over my head – just a reminder of what would happen if my bipolar self went too far ya know…

    It makes sense though. The neuroleptics are to “help” people. The antipsychotics are to get people under control.

  90. There is no such thing as bipolar anything (the name itself is a reformulation of the practice’s old folk label manic-depression which, for some reason, didn’t ring techie enough). It’s an industry invention to sell products (and services). Bipolar is a fad diagnosis, on par with the idea of “discovering a gene” for alcoholism. Everyone and their grandmother now has bipolar. (How did it become 50-times more prevalent than diabetes or heart disease?)

    Some of the results of Risperdal intoxication are lethargy, apathy, disconnectedness, confusion–a great way to vegetablize a person. Emotional expression is just one of the human aspects that are steamrolled by the pill.

    The ADHD isn’t a disease, rather it’s a regularly misunderstood and incorrectly diagnosed constellation of fundamentally personological abilities and disabilities (even plain distractabilities-–and surprising attentions to detail)–-as big as the autism spectrum. It’s equally as part of an individual’s complex makeup as social skills. Ritalin brings some people in line for that 1 perceived worst year on a classroom.

    The epilepsy, autism is an altogether different situation. The other stuff is red herrings and shaggy dogs–gooping up critical decisions with fake clinicalized baloney and certainly something I personally would never consider “medicating.”

    Politics is opinion-making, and one of the means by which one accesses and his/her decision makers and negotiates the greater organization, whether it be a corporate office, the country club or government. Politics is one of the ways that an individual gains or loses a host of things in society.

    A careful reading of each article in the blog reveals that the author lost her liberty in her formative years–unnecessarily and unfairly–through existing public policy (both health and law). Politics are a method by which one redresses those policies, for her and for others in like situations.

  91. In Spanish, POLITICS and POLICY are the same word (POLITICA). (would it be the same in Latin?) I think this has some useful implications, sort of along the lines of what “anon” is saying.

    I’m another one who finds myself at a loss when considering left/right or blue/red or liberal/conservative or republican/democrat/progressive/greenie/libertarian/etc. political distinctions. I remember a commentator once who declared himself to be of the “radical middle”… but even that doesn’t fit, if you are far from the middle on some stuff.

    But justice politics? There’s something to sink your teeth into. Because it’s about something that needs to happen or something else that needs to stop happening, rather than about believing in someone that you know is probably going to turn out a liar anyway (by that I refer to usual election politics).

  92. Amanda,

    Yeah, I agree with you. My remarks were kind of tangental to the original point. I’d just been in a lot of discussions recently about the benifits of relaxation and stress reduction as an addition to medication in treating epilepsy, and wanted to run my ideas by someone with some knowlege of the subject. I wasn’t endorsing the “epliepsy as emotional reaction” concept. Thanks for responding.


    Give me a couple days, okay? Your communication style and mine are very different, and I need to think through the explination.

  93. Colin,

    I just tried to send you an e-mail but I got an undeliverable. Could you send and e-mail to me at I replied to your first e-mail to me a couple of days ago and hadn’t heard anything from you so I just tried to touch base with you when the e-mail came back undeliverable.

    I would like to hear from you.


  94. J says: “Give me a couple days, okay? Your communication style and mine are very different, and I need to think through the explination.”

    I really will appreciate that J.

    I become uncertain about how to proceed, if at all, when it becomes clear I’m upsetting people; even when it might still seem to me that the upset involves a degree of missaprehension of what I said, or at least intended to say.

    Having done just that in this instance, with Clay and others, my default would be to just bow out: maybe your perspective could give me another option.

    Thankyou for your consideration in responding

  95. Amanda said:

    With regard to things other than left-right, what bothers me about that, is there seem to be a broad variety of views that people are encouraged to take on issues, not because of actual analysis of the issues, but because one “side” or another says that’s “our” issue.

    The assumption of “our people” possessing certain “suites” of opinions has pushed me away from way too many activism groups. There are way too many people who equate “I just think it’s more complex than that” with “being on the ‘other side'”, and you as a dangerous element who needs to be suppressed and shut up. Especially if you’re disagreeing on something considered to be a key issue, and keep running into that over and over again, and keep getting subjected to The Lecture which doesn’t change your mind at all. There have been times when we tried to stick with it anyway, up till the point of being explicitly told “If you disagree with us on that, you cannot be part of our movement.”

    anon said:

    Bipolar is a fad diagnosis, on par with the idea of “discovering a gene” for alcoholism. Everyone and their grandmother now has bipolar. (How did it become 50-times more prevalent than diabetes or heart disease?)

    The bipolar thing seems to be similar to how everyone at the turn of the century was getting diagnosed with “neurasthenia” (which no one seems to have heard of any more). Oddly enough, neurasthenia was considered, at that time, to be biological in origin (caused by physical degeneration of the nerves) while schizophrenia (although it was defined differently then) was considered to have a psychodynamic origin. (Not that I have faith in any of the more modern claims to have “discovered ‘real schizophrenia.'” If something is an artificial made-up classification to begin with, then changing the definition of it isn’t ‘finding out what it really is,’ it’s just coming up with a new made-up classification to replace the old one.)

    However, regarding people who talk about their bipolar and then describe things that actually aren’t that different from our experience… I’ve tried to ask some people how the things they’re defining as bipolar differ from others’ reactions, normal human experience at emotional extremes, and normal human experience under stress, the answers I get are unsatisfying, to say the least. (And lines of questioning that go “I do that too, so what makes that different from my experience?” seem to be met with things like “Well, if you do that, you have bipolar disorder too. See a doctor.” …like we haven’t already had it suggested as a diagnosis for us, and fought the label.)

  96. Yeah.

    Although I’ve also seen the “complexity” thing used as a… well let’s just say that when I get pissed off about a murder of another autistic person, and someone says “But that’s a complex issue, look at the pitiful parents, how dare you condemn their actions…” I kind of see red. (In part because they seem to think that a firm stance is not based on complex ideas or understanding of situational nuance and so on and so forth — when in fact in that case the opposite is true.)

    But then, there are a lot of things, where even if I ostensibly hold the same stance as other people on it, my reasons are more thought-out than some, and just flat-out different from others. And it can be irritating to be basically, because of the stance I hold, indistinguishable from someone who holds the same stance but for totally different reasons.

    For instance, most people who are anti-euthanasia because of prior involvement in the pro-life movement, while having solid reasons for their views, usually don’t understand (or always want to understand) the difference between their views and the views of a lot of the disability rights movement, even if the opinions look the same. (Meanwhile as a disability rights activist who opposes euthanasia on those grounds, I get a lot of liberals telling me I’ve been “duped” by the right wing, and that disabled people are simply easily led and have been fed propaganda that makes us feel threatened when really we’re not, and are only these poor pitiful souls being exploited… ad nauseam.)

    So… yeah, have seen “It’s more complex than that” used in both productive and unproductive ways.

  97. In post 99 anon says – “There is no such thing as bipolar anything (the name itself is a reformulation of the practice’s old folk label manic-depression which, for some reason, didn’t ring techie enough). It’s an industry invention to sell products (and services). Bipolar is a fad diagnosis, on par with the idea of “discovering a gene” for alcoholism. Everyone and their grandmother now has bipolar. (How did it become 50-times more prevalent than diabetes or heart disease?)”

    First off, one of the reasons that more people are being diagnosed as bipolar is that over the last few years the bipolar spectrum has been widened to include hypomanic stages. Simply put, hypomanic means you’re manic but not so manic that you completely lose touch with reality.

    It may seem that being diagnosed bipolar is a fad. I wouldn’t know about that as I don’t keep up with what society thinks is currently cool. I do know that the name change from manic-depressive to bipolar seemed to happen around the mid 90s. Another case of making a word more PC so that it’s not so scary I suppose.

    Berke^Amorpha said – “I’ve tried to ask some people how the things they’re defining as bipolar differ from others’ reactions, normal human experience at emotional extremes, and normal human experience under stress, the answers I get are unsatisfying, to say the least.”

    Yes, many of the things that are defined as bipolar would be considered normal human reactions under stress. The problem is that the bipolar person doesn’t have to be under stress to have those reactions. Example: I get a call from my Dr saying that we’ll need to change the date of an appointment because he’s overbooked. I perceive this as a rejection and spend the next week in my bedroom replaying every conversation I’ve ever had with him trying to figure out what I did to make him not like me anymore. I’m so worried about it that I stop eating and taking showers and start sleeping 14 hours a day.

    Having issues like delusions of grandeur, feelings of omnipotence or racing thoughts that keep you awake for days at a time and then going from that to the deep dark pit of depression where you stay in bed for days crying with the lights off are some symptoms of being bipolar.

    Although it saddens me to see that my illness is still so misunderstood, I’m glad for the opportunity to try and explain.

  98. If I’m reading Berke correctly, though, he(?)’s quite possibly had those particular experiences, but doesn’t view them the same way psychiatry does.

    Similarly, I’ve had every “symptom”, in extreme form, of what’s referred to as post-traumatic stress disorder, but I don’t at this point view it through an illness model. Generally, when I say that, the first thing people do is tell me that I must not have had very severe “symptoms”, because if I did, I would wholeheartedly embrace the belief that this was something that could be classified as a disease.

    I wrote in this post a lot more about that, including getting into details around depression, and someone else’s experiences that usually fall under the classification of schizophrenia, but who rejected that classification, and who now gets told, entirely based on her rejection of that classification system for her experiences, that she must not have really (insert any of the above: heard voices, thought that she could talk to God through her alarm clock, believed that looking people in the eye could kill them, believed herself to be invisible, believed herself capable of changing traffic lights, etc).

    Basically, a really common reaction to people like me, and Irit Shimrat, and (as far as I can tell from their posts) the Amorpha system, is to be told that if we’d really experienced Thing-X, with Severity-Y, we’d also embrace an entire belief system about it that we have either only partially or not at all embraced (such as the idea that our experience is an “illness”, and/or that medications are the only solution for us, and/or that psychiatry has figured out the right classification for us, and/or that what we experienced was wholly and spontaneously biological, and/or that we had a “chemical imbalance”, and so on). More detail (and more nuance) in the blog entry I linked on the topic and the ensuing discussion.

    You might want to read that entry, and the comments, before assuming much about my, or Amorpha’s, experiences. It might in the end be a difference of opinion about the meaning of the same experiences.

  99. The ‘opinions look the same’ thing is, fwiw, one of the things I run into trouble with in the anti-psychiatry movement. Because of the prevalence of people who oppose forced drugging for reasons like, say, they think everything labeled a mental disorder is actually caused by child abuse. They still believe that all these things need to be cured, and that you always need a professional to cure them, which is the point where I have to step away and ask whether our goals are really that similar, or whether I’m just helping them work towards a “same shit different paradigm” world. (I certainly don’t want any more rounds of “abuse did this to you etc etc” thrown at us– I think we have the prerogative to decide what it has and hasn’t done.)

  100. Berke^Amorpha,

    You said:

    “However, regarding people who talk about their bipolar and then describe things that actually aren’t that different from our experience… I’ve tried to ask some people how the things they’re defining as bipolar differ from others’ reactions, normal human experience at emotional extremes, and normal human experience under stress, the answers I get are unsatisfying, to say the least. (And lines of questioning that go “I do that too, so what makes that different from my experience?” seem to be met with things like “Well, if you do that, you have bipolar disorder too. See a doctor.” …like we haven’t already had it suggested as a diagnosis for us, and fought the label.)”

    Help me out here. I’m not sure, but are you saying that bi-polarism is not real and that people diagnosed as such, are no different than “normal people” (whatever normal means).

    If so, I can tell you that extreme mood swings are not “normal”. Everyone can experience happiness, sadness, anger, etc. But, the dramatic swings from normal to severly depressed, to extremely elated are not typical (“normal”).

    When that is happening to an individual, something is wrong. If people like “anon” aren’t comfortable with the term “bi-polar” then, so be it. We can regress to the old term “manic-depressive”, but I hope not, since that term sounds ugly. Surely, we could come up with a more dignified term.


    At the risk of getting into an arguement, with you, (that I don’t want), I will tell you, that I can’t understand those who would think that killing autisic children, as well as other children who are diagnosed with other disabilities, is wrong. Plain, and simple!


    I can see, very plainly, where your fustration lies!

    As a NT, I feel the same. Any monster who would advocate killing a child, adult, whatever, who is considered disabled should be stopped and called out publically – for example Pete Singer.

    I am as pissed off as you are! Even though I am NT.

    So, naturally, I am POLITICALLY, engaged!

    I am experiencing, perhaps, the same naseating feeling!

    That being said, I being a “pro-life” conservative am “PRO-LIFE”! PRO-LIFE!!

    So, why would you think a “pro-life” conservative would be absent in the evil Dr. Singer’s debate regarding exterminating autistics, mentaly retarded, etc.?

    Dr. Singer is a very evil man! His agenda is wrong. And, I stand against it!

    Every person on this Earth has value. Exteme value!!!

    I want evreyone’s voice (opinion) to matter!!!!!

  101. Clay, what I’m saying, is that unless you (or anyone else who comes from an anti-euthanasia standpoint primarily through the pro-life movement) are also well acquainted with disability politics, we may be allies, but there’s differences in what views got us where we are on that particular issue.

    And believe me I know pro-life conservative disability rights activists who oppose euthanasia, who say that the mainstream of the pro-life movement doesn’t get disability rights. Maybe you do, maybe you don’t — I don’t know you personally well enough to say — but a lot don’t, because they’re two different standpoints, even if they coincide in some people and on some issues.

    The fact that you may not understand the disability rights standpoint doesn’t mean that your own standpoint is invalid. (And I don’t recall actually saying that.) It becomes a problem when people who come at these issues from the pro-life movement, without any understanding of the basic ideas of the disability rights movement, assume they know why disability rights activists hold similar opinions on some of these issues. Yes, there is “all people have value,” but there’s a lot more than that. (As any person who’s deeply involved in both the pro-life movement and the disability rights movement could likely tell you.)

    I don’t know you well enough to know whether you’re well-versed on disability politics or not, and none of my statements were about you specifically because of that. The fact remains these problems happen between people who don’t understand the reasons for the views each other hold. (And assume that the reasons are the same.)

    Actually, now that I look back, I wasn’t even talking to you, or about you, and the only people I was mad at in that post were not you, but people who use “That’s a complex issue” as code words for “I am condoning murder” (I don’t think you would say that). I really don’t want to discuss this any further, I wasn’t talking about you.

  102. Berke: That’s in a nutshell what I can’t stand about the antipsychiatry movement. There’s a warped strain of logic in there that goes “If we admit anything is biological or innate, then we’ll have forced drugging, so we just won’t admit it.”

    Of course, half that movement is run by frustrated psychoanalytic types these days, so that’s part of the problem. It’s not even truly antipsychiatry, it’s anti-biological-theories-of-psychiatry. If much of that movement had their way tomorrow, autistic people would all be getting Bettelheim-style (or possibly Breggin-style) psychotherapy.

    And I’m more for dismantling the power structures of psychiatry altogether, which is very different from the “consumer movement’s” attempts to basically keep power structures roughly the same and only change a few things, and the “antipsychiatry movement’s” apparent goal to replace it with something just as bad or with outright quackery.

  103. Amanda,

    I can assure you that I am one of those “pro-lifers” that is throughly “pro-life”. I don’t differenitate between a fetus or an child/person with autism. Life is life. And it is all sacred. If evil men like Pete Singer had his way, murder would happen on a regular basis based upon the recommendations of a committee that he would chair.

    I first heard of people killing people with autism from a blog I was reading. I was shocked! Murder is murder. The very idea that someone was somehow justified for either the “stress” of living with the victim, or putting the victim out of their misery is detestable. Murder is murder and those who commit such crimes should be sentenced to the full exent of the law!

    I don’t know anything about what you refer to as pro-lifers and pro-disability persons coming to the same anti-euthanasia decsion via different paths. I just know that life is precious and if we don’t stand up for it, we are damning ourselves and any possible future for mankind, because Singer and his ilk would make the Holocaust a mild event in comparision to their “Final Solution” if given the chance.

    Sorry for the rant.

  104. Well… the full extent of the law is the death penalty at times, and I assume you don’t agree with that given your political beliefs.

    And, you’re right, that’s what I mean, most people who come at euthanasia through a pro-life viewpoint don’t understand disability rights viewpoints on it (because mostly of lack of exposure — most people don’t understand disability rights viewpoints on anything).

    Here’s an article on some of the differences, and I’d suggest you read it. I can say from experience that people who will not listen to an anti-euthanasia (especially an anti-“voluntary”-euthanasia) argument based on religious grounds, or on the grounds of the general pro-life movement, will often understand and listen to the disability rights viewpoint presented, if given the opportunity. And I think the author of the article is right, that our allies need to understand that their viewpoint is in alliance to ours, and not identical to ours (even if some of us actually hold both viewpoints — and I count myself as someone who has multiple reasons for disagreeing with euthanasia), and that this combination of similar goal with different reasoning behind it is a good thing, not a bad thing. But still a thing that has to be recognized, not a thing that has to be horrifiedly swept under the carpet as soon as it’s noticed.

  105. There is a difference when depression or bi-polar occurs when there is no observable reason for changes in emotion and the person can not seem to motivate themselves regardless of whether or not they want to feel that way. That however does not automatically have to mean medication or therapy – although that is certainly pushed by the psychiatric industry. Some of those drugs actually produce more symptoms. I don’t have an official diagnosis of being on the spectrum but have been labeled with OCD and dysthymia. The interesting thing about dysthymia is that your perceptions are entirely dismissed because it is considered something a person can have for so long that they do not know what it is like not to be that way. So you can be completely rational and not complaining about anything but yet be considered not able to decide for yourself if you are content or not. And my experience is that can lead to threats of involuntary hospitalization even though your behaviors are not at all out of the “ordinary”.

  106. Colin,

    In retrospect, I’m not sure if symbols are the right word. I think that was the first thing to come to mind after reading the passage where Clay was in the water of politics, Evonne was a butterfly with a hyperspeed metabolism, and Amanda was King Kong. But that doesn’t seem to be the main matter.

    What I’ve noticed is you tend to develop labels and descriptions of people here at this blog, and display them as if the people you’re talking about weren’t right here, reading and communicating along with everyone else.

    In your remarks about epilepsy, for instance, you take a few facts about Amanda, Clay, and Clay’s daughter (Both Amanda and Clay write blogs with strong but different political perspectives, Amanda has a history of caretaker abuse, both Clay’s daughter’s and Amanda have seizures) and attach them to highly speculative inferences to explain epilepsy. And when the people you’re describing rejected parts of your description as inconsistent with their own knowledge and esperiences, your responses were (paraphrased, “I don’t think you understand,” and “We’ll have to agree to disagree.

    It doesn’t look like your interested in communicating with people, so much as theorizing at them, or about them. This isn’t harmful in the same fashor or degree that much of the abuse Amanda describes and attempts to prevent or change is, but it has a certain connection. A lot of people have theorized at and about the people under their control, and disregarded communications to the contrary, with bad results.

    Like I said, I have trouble with your communication style so I won’t presume that you’re trying to send the message I’m percieving. But that’s the impression I got, and I don’t think I’m the only one.

    Hope that helps.

  107. J, thankyou for taking the trouble to respond.

    I do indeed need to learn ever more about what others can tolerate by way of communication and interchange.

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  109. I am hoping to meet Nazeer one day, and when I do he is going to get the Larry treatment, actually as he is a literateur I probably have a lot in common with him though I am still waiting for the library to get his book so I can read it.

  110. There is an odious little book, chocful of “view-from-above”-ness; “The Woman Who Swallowed A Toothbrush And Other Bizarre Medical Cases” by Rob Myers, M.D. It’s written in a tone of scornful amusement: “Let’s laugh at these people, and how stupid patients can be” and is of course very patronising to the people whose cases he is describing. It goes without saying that he almost certainly did not seek their permission to use their stories (some of which contain sensitive/personal/embarrassing information about them) in this way. Much like you found in Oliver Sacks writing about his patients, Dr Myers reduces the people of whom he is writing to comically pitiful caricatures; I also found his tone heavy-handed and moralistic. To quote one chapter:
    “On the streets as a teenager, he had worked in menial jobs for years before abandoning his remaining thread of pride and embracing government dependancy”.
    Enough said!

  111. I’ve read this post some month ago, and I often re-think about it, What you explain about view from above, is something I have many times perceived in texts I have read on autism and other disabilities, and I was very disturbed by it, but before I read this post I had no words for it.
    I’ts very difficult now for me to even try to read some texts on autism from someone I don’t know because I always fear it will be full of view from above, and I tend to have the same reaction than you when I read a text full of it.

    Can I translate this text in french and publish it in the website where I often post:
    It would be great for me to use it to explain them why I can be disturbed by some text even when they seems to be positives

  112. “I’m still not sure what you mean by “has an agenda”. All organizations have agendas, generally when people point out that a group “has an agenda”, though, it’s to lower the perceived credibility of that group slightly — they “have an agenda” and therefore can’t be entirely trusted, or somesuch. Not sure what the point of mentioning that a group had an agenda would be, otherwise, because all groups of any kind have agendas of one kind or another.”

    I think the way most people mean it is like the contrast I noticed between Binet and Goddard’s research into mental deficiency.

    Binet was trying to figure out what intelligence was. To that end, he’d grab all these theories from various places, figure out a way to test them, and then run the test. Reading his work I got the sense that he was a true scientist, looking for the facts and doing his best to avoid letting his biases cloud his view. (Not to say he was perfect, since he badly missed the point in some behaviors that I suspect were due to institutionalization, and probably also missed a pile of class dynamics and such when he co-opted low-level staff as his control group.)

    Goddard was trying to push eugenics. To that end, he made sure to ask questions in a way that would give him the answer he wanted. He’d review the families of mentally deficient patients and look for evidence of inherited problems, and his way of deciding whether various relatives (many of whom he never met) were mentally deficient was unclear and highly subjective. It’s easy to judge people from the past for not knowing stuff that modern people know, but some of his research sounds seriously screwy, in a way that Binet’s stuff did not. (For example, when he did the stats to see if alcoholism in parents caused mental deficiency, he lumped both fathers and mothers together, despite how different the reproductive roles of the two genders are in producing a child. I find it hard to believe that he honestly didn’t see that pregnancy made a difference given that other researchers earlier on suggested prenatal exposure to various things as a potential cause of disability.)

    I think when most people say someone who is presenting facts ‘has an agenda’, they mean more like Goddard than Binet. Goddard’s facts aren’t trustworthy because he’s tailoring them to show what he wants to show. Whereas Binet is just trying to find facts without making an effort to prove anything with those facts.

  113. Pingback: Experts say the darndest things: hyperlexia edition! « Urocyon's Meanderings

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