This usually happens when I tell a story about an instance of discrimination. It could be a story about me, about one of my friends, about anyone.

Someone always responds, “There’s got to be more to it than that.”

To give an example, I occasionally casually mention my propensity to attract police officers when walking out the door.

Insert skeptical tone: There’s got to be more to it than that.

The person then grills me for details. If the person finds out what I look like, for instance, they might say “Oh, okay then.” Sometimes they even go further and say that the problem is not that I walk out the door, it’s that I look like I do, and that I should not even want to be able to walk around outside like anyone else without getting picked up by the cops. Because they’re just doing their job, and part of their job, apparently, is to rid the streets of people who look like me.

“There’s got to be more to it than that” translates immediately by now into “I don’t want to see injustice, please explain it away for me so that I can tuck such distressing information into a corner of my head and forget about it and go back to being oblivious.”

“There’s got to be more to it than that” means “Find some way, please, any way at all, to blame the recipients of such injustice, rather than the perpetrators.”

It means “Please, please, please reinforce my prejudices. Please reinforce the fact that I think the world is more or less okay as it is.”

It means “Admit it, you are the one who did something wrong, you’re just pretending it’s about something different to avoid responsibility.”

And much more, but very little of it anything good. It means avoidance of reality, but disguised. It means that when I tell these stories, the people I listen to just flat-out won’t believe me.

Former psychiatric patients who want to believe the psych system is more or less basically good, use it when they want to claim that if I was mistreated, it was only to help me, and only because I was a “danger to self or others” (I hate that phrase).

Non-disabled people use it when they don’t want to confront ableism.

Autistic people use it when they want to believe that all the horrible things that happen to other autistic people would never happen to them, because they are the good and presentable ones.

And so on.

It restores an illusion of justice, order, and tranquility to the world, and puts everything neatly back in its place. I have never seen a conversation go well in which “There’s got to be more to it than that” was uttered.

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.

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

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

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

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

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

This post stems out of part of a long reply to someone in the comments section of my last post. She talked about the kind of environment where even reactions to pain are seen as bad behavior, and the way this shapes a person, to live in a place where the fight-flight response is constantly triggered, but there is no chance of fighting or fleeing. There are, certainly, psychiatric terms for all of this, but I’m not going to get into those in this post.

Often, people tell me that I am qualitatively different from other people with developmental disabilities. They tell me this on the basis that I understand many of my rights and stand up for them. I will admit this is a qualitative difference in a way from many (certainly not all) people who’ve been in the system, but it is not a static difference.

I want to describe what I was like immediately upon leaving institutions.

I did not know I had rights. At all.

When I say I did not know I had rights, you may be thinking of abstractions. I am thinking of something like, I did not know that I was allowed to think my own thoughts. When someone suggested that I repeat this to myself, I thought even thinking about it would lead to my death, because that is what I had been explicitly told.

I did not know that in my home I had a kitchen. I thought I had “kitchen privileges”. I thought every single aspect of life was a privilege that I did not deserve and that could and would be taken away at any time.

Every single aspect of my emotional and mental processes was bent in on itself, and mainly concerned with being an insignificant nobody as best I could. I was not good at this, and in fact at times my attempts to disappear made me more conspicuous. But I had been trained to be a non-person and I tried my best to comply. I did not have much thought or energy left for anything else.

It did not work, because most autistic people are naturally quite conspicuous. I could not avoid meltdowns. I thought that every single meltdown I had was going to land me beaten up or killed or tied down, but I could not stop them and this scared the crap out of me. Even more normal things scared the crap out of me, I was trying to be an impossibility, a real person cannot be a non-person, no matter how hard they try, and I was a real person.

That’s what psychiatry tends to forget, is however “damaged” a person may be by an experience, there’s a part that the damage cannot touch about them, even if they can’t see the part, even if all their conditioning tells them to not look at that part and that place, even if looking at that aspect of oneself creates terror and shutdown. Psychiatry refuses to look at that aspect of people either, or it would find far more resilience in everyone than it does.

I was a lot like a wild animal that has not been tamed but that has been caught in a cage and not allowed to move on its own for years. When the cage was lifted, I did not even have the capacity at that point to notice. I took the cage with me in my head. Which was just fine with any and all professionals in my life, that’s where they want the cage. They brag about letting people out, but so often it’s by creating cages in people’s minds.

I had a friend a couple years back with a cage in his head, and he’s still physically imprisoned as well. I don’t know if I’ll see him again, but I remember talking to him about this stuff, and he was astonished that I knew what he was thinking so often. He asked how I knew all this, and it was very simple: Cages don’t create a particularly varied response after a period of time.

I had to learn that I could think, that I could move freely, that I could use appliances in my own home, that I could eat three meals a day, that I could choose anything about anything. It was like a muscle atrophy (and I think I had some of that, too, from prolonged immobilization) only it was my head-muscle that wasn’t working too well.

Dave Hingsburger talked in a video called “The Ethics of Touch,” about providing services to people with severe disabilities, who had no formal communication system, and needed assistance with transferring from a wheelchair. He talked about how if everyone approached this in a respectful way, and lifted the person gently after explaining to her exactly what they were doing (which, he said even if she didn’t understand the words, she’d know something different was going on), then she would become “addicted to respectful treatment”. If someone tried to grab her and hoist her without permission after that, she’d stiffen up or arch her back or do something else to show resistance. He had seen this happen, people becoming “addicted to respectful treatment” within a matter of weeks.

Which is why I hate the idea that there is some innate capacity I have that others don’t. This capacity is actually possible in anybody. It doesn’t have to do with understanding too many abstractions. It has to do with a gut-level feel of what’s respectful and what’s not, what rights you have and what ones you don’t. It’s something that most people have, but they learn from their society so early which rights they have, that it’s invisible to most people.

The main thing unusual about me is I have had opportunities that a lot of people haven’t — contact with people who were outside the system enough to show me another way of thinking and living. Not that I don’t still at times get confused about what rights I have, but nothing like to the level of before.

This is why, though, I am so passionate in standing up for rights, because I know exactly what it’s like, not only not to have any, but not to know that they exist because not having any is so ingrained in your head that you can’t think of anything else. I have seen people justify violating people’s rights — in some pretty fundamental areas — by saying “They don’t know they have any rights, they’ve never had any, so it’s okay.” I find this practice despicable. And how on earth can a person learn they have rights if they are constantly treated as if they do not have them?

I can so easily see myself presented at some point as a classic example of a person who has too little conception of rights to bother with, or who is too “damaged beyond repair” to do anything with, I’ve heard both of those said about me many times in the past. These days, though, I’m “different” than that. Yeah I am, actually, but not in a way that can’t be learned.

This still isn’t the post I’ve been trying to write, which is more political in nature.  This is about something that’s confusing me in everyday life.

A couple of years ago, I was severely dehydrated, and physically weak, and had to spend quite awhile lying on a couch in a lot of pain.  Somehow, during that time, it clicked that I inhabit this particular body, not any other body, not any other object, and that this particular body needed to be kept alive if I was going to stay alive.  A few years before that, I had been sitting in a place where they gave out free food, and realized that other people’s thoughts could not penetrate my own, that just because I was thinking about something in someone’s presence did not mean I was talking to them about it.

These were major realizations, but they do not seem to stick.  I know them intellectually, but understanding them viscerally is not something that has stayed around.  That, basically, my thoughts and actions and self are contained in this tiny little opaque creature that I can’t even feel or see all of or even find much of the time, and that has a finite lifespan.

Today someone picked up some of my things, and I screamed.  I didn’t mean to scream, it felt like they were invading a part of me.  It felt like “me” is everything I perceive and think about, and then there’s this one little part of me, that can move on my command (sometimes) and that I can feel (sometimes) and that hurts when poked (sometimes) and that reacts to emotions (sometimes).  That part of me scampered into the other room and hid under the blankets.

And I thought at that point about how my things are not part of me, that picking them up and looking at them is not the same as grabbing my arm and inspecting it, and that I know this.  But on some level, I don’t seem to quite get it, because I still react like this.

I tried pounding on my body but it’s not convincing it viscerally that it’s me, and it is becoming sore.

I still react to people walking into my apartment as if they are walking inside of me.

I still forget that when I am thinking about something around somebody, they are not going to usually know what I am thinking about, or consider me to be interacting with them.

And I still forget that in all this vastness in general the only part of it that’s me is the little ape-like creature typing on the computer, and I still have trouble locating various parts of the ape-like creature even if I can locate exactly where a lot of other things are.

When I’m less able to conceptualize (or too distracted), I forget even more things, including at times my intellectual knowledge that all these perceptions are not how things are.  I wonder how to convince my body that I live in it and not anywhere else.

Edited to add: Part of this post was reshaped for inclusion in the article Up in the Clouds and Down in the Valley: My Richness and Yours published in Disability Studies Quarterly.

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Quite some time ago, a parent, seeing photographs and descriptions of me, decided on my behalf that there was a richness to life that I was missing out on and would always miss out on because I am disabled, specifically autistic, specifically (in this person’s description, not a term I’d use myself) “profoundly” autistic. I wrote a response at the time, but did not have the language to articulate a fundamental difference between his assumptions and my own. Now I, at least partially, do.

Humans have only a limited capacity for perceiving and interacting with the world, and within even the broadest of human capacities, life is infinitely dense, infinitely rich, infinitely beautiful, and there is always infinitely more of it than any one human being can possibly perceive or experience. This is not to say it always looks that way, but this is always there.

That means that any human being can be filled to the absolute saturation point with this richness and there will always be more there, and their experience of this richness is not diminished in the slightest by the fact that there is always so much more of it than they could ever understand.

So, leaving aside for a moment the fact that autistic people appear to directly perceive more of the world than non-autistic people do, how does being autistic change this? How does being disabled in general change this? Even if this somehow meant that we would not have certain particular experiences that particular people associate with “giving life meaning” or “giving life richness,” surely that richness is everywhere, and not just within particular experiences that particular people find joy in.

A full, rich, and rewarding life is not defined by tallying up the experiences valued by particular people in particular cultures in particular places, and is not defined by the cognitive or physical capacities of the person living it. The world has that richness embedded deeply into it, at an infinite level of complexity and simplicity and detail, and it can be found anywhere a person looks.

As someone whose cognitive and physical abilities vary widely from day to day, moment to moment, I know that this richness is just as present when I lack the capacity to differentiate one sensation or moment from another as it is now while I am engaging in complex thought, just as present when I am fully immobilized as it is now while I am rocking back and forth and rapidly typing on my computer, just as present when I have seizures every few seconds as it is now when I am seizure-free, and just as present when I am ‘bedridden’ with pain or fatigue as now when I am active and mobile.

The problem with people’s ideas of quantifying this richness is that they completely leave out the fact that it is infinite in comparison to the broadest of humanity’s finite capacities. A similar problem happens when people try to quantify personhood. In that moment they overlook something vital about the world and people’s experience of it.

A conversation I had quite some time ago that came to mind when thinking of the “I-statements” thing. Where _____ is a highly offensive word for someone with a severe cognitive or sometimes severe physical impairment.

Person: I’d rather die than be a ______.

Me: I don’t believe the word _____ really applies to anyone.

Person: I didn’t say it did.

Me: But… doesn’t “I’d rather die than be a _____” kind of imply that the category of “_____” actually exists?

Person: No, I’m just saying for me, I wouldn’t want to be a _____.

Me: So you think you could become a _____?

Person: Yes.

Me: ….which means that some people are _____s, right, if you’re so worried about being a _____?

Person: No! How could you think I’d say that about someone else?

Me: Because if you’re worried about becoming a _____, then it means someone else has to have been a _____ or you wouldn’t worry about it.

Person: FOR ME. I’m just saying. For ME. (Taps chest several times for emphasis.)

Me: Yeah, but you’re saying there’s a category of people _____, and that’s what I’m disagreeing with you about.

Person: FOR ME!

I ended up giving up. The person ended up stalking off very pissed off, after repeating “for me” and tapping her chest and looking pitiful several more times. (Since the person was working for me and it was in the middle of a shift, this became a problem.)

What interested me about this, in retrospect, was that she seemed to think that personalizing something meant she had no actual responsibility for what she said. And this assumption was so ingrained that she was shocked I’d question it. Almost like, “The rules say that if I say ‘for me,’ that ends all discussion of what I’ve actually said. How can you possibly break such an obvious rule of conversation?”

Of course, this is the rule a lot of places: If something (anything) can be framed as someone’s “personal experience,” then it’s totally out of the realm of questioning it. Even if their “personal experience” contains several dangerous assumptions about the world in general, it’s still their “personal experience,” and those who question or criticize it are committing some kind of sin.

It reminds me of a guy, years back, who told me that he was a racist (that’s the word he used to describe himself). He said that he, personally, believed that black people (he used a different word) were stupid and inferior to white people in almost all ways. But this was just his personal opinion, you know, and not everyone’s opinion, and it was just his experience of the world, so I shouldn’t question it. It wasn’t like he was actually trying to speak for anyone else, or anything.

Interestingly enough, same guy, was groping a girl who kept telling him to stop touching her and to get his hands off her. (Note: I knew both of them relatively well, this wasn’t a stranger sort of situation.) I intervened, and the girl told me off, saying that she personally enjoyed having a guy touch her when she said not to and that this had no particular effect on anyone else. I don’t want to know if this guy has raped or sexually assaulted anyone by now, but I would be shocked if he hasn’t.

It seems that just about anything becomes okay if it’s “just personal experience” or “just personal preference,” and people seem to believe that what they do is in some bubble that doesn’t affect anyone else.

They say life on a battlefield
Is sink or swim
And only the strong survive

And those of us who survived
We survived
And we say to the next
As they’re standing in line
“We’ve done our time,
now it’s your turn”

We learned our lesson too well
We’ve taken our hell and passed it on
“It will make you strong,”
We say as we turn away

How easy is it to forget
The ones who walked with us, talked with us
The ones we fought alongside
They didn’t survive, they fell

They were as strong as we
But we can’t see this to be so
For it would show how little power
We had in the hour that they died

And we honor our fallen comrades
With a rousing inspirational speech
“You are our successors,” we say
“And there’s no room to be weak
Because life on a battlefield
Is sink or swim
And only the strong survive”

And those of us who survived
We survived
And we say to the next
As they’re standing in line
“We’ve done our time
Now it’s your turn”

We’ve learned our lesson too well
We’ve taken our hell
And passed it on
“It will make you strong,”
We say as we turn away

And how easy it is to forget
The ones who walked with us, talked with us
The ones we fought alongside
They didn’t survive, they fell
Consumed by the hell
We recreate
In the name of memory

(Written several years ago, came to mind in a recent discussion with someone who waxed quite eloquent about the merits of this approach to life. It does have merits, but only for the people who survive it, who usually manage to forget everyone who didn’t.)

I’ve written before about descriptions of autism before autism was known about, in old documents about various kinds of “idiots” and “imbeciles“.  Here is a little comment about children diagnosed as both emotionally disturbed and deaf at a time when hearing tests weren’t all that reliable, from someone who was there at the time and now thinks these children were autistic:

I was supported by this National Institutes of Health training program for a fourth year during which I attended pediatric neurology ward rounds with Dr Jim Hamill or Dr Carter and Dr Carter’s Wednesday morning outpatient rounds for children with cerebral palsy and those with speech and hearing disorders. The latter intrigued me, as what ailed thesenonverbal children was not obvious. (I found out later that behavioral audiology was unreliable at diagnosing the severity of hearing losses in very young children, and, in retrospect, that autism would no doubt have been the correct diagnosis in some puzzling “emotionally disturbed” mute children.)

That is from “Isabelle Rapin:  An Autobiography”, in the Journal of Child Neurology (May 2001), and she’s describing work she did in the 1950s.
Another set of autistic children who weren’t known to be autistic back then.  I bet today they would be.  But, today, they’re part of an “epidemic”, because nobody could have missed such severely autistic people back in the 1950s.  (That last sentence is sarcasm.)

I don’t have the attention span at the moment to elaborate at length, so I’ll leave the implications to others.  But, I’m suspecting there’s a whole lot of different disciplines you’d have to collect up and count kids from in previous generations before you could say you knew how many autistic people there really were back then.

I was caught off-guard in a major way earlier today at the park.  I was already jumpy and out of sorts after my staff had, accidentally and as a result of a sudden mechanical problem, almost squished my dog’s head in a car window.  Then at the park we met a special educator.

I can only blame my lack of having my guard up on the earlier things today and my general cognitive friedness lately.  I answered every question she had, in detail, in more detail than I like to give strangers.  She was a special ed teacher, she had a few autistic students, and wanted information about communication devices.

Generally, I’m willing to give information about communication devices to people who want that information.  It’s when they start getting into the mechanics of my own functioning that I start to get antsy.  But I had no way of stopping the questions or my responses to them at the time.  I’m not sure I can explain how this feels to a non-autistic person and have it make any sense.  It’s a sense of violation, but at the same time I did absolutely nothing to stop her or let her know things were getting invasive.  I didn’t have any brain left over for that, I was too busy answering questions.

To make matters worse, my staff, who had only just met me for the first time this morning, started answering questions and volunteering information that I wasn’t comfortable with.  She told the person about my website.  She told the person information about me that isn’t even true, like that I never need anyone to push my wheelchair or anything.  She based this on the fact that I didn’t want anyone to push it on the level ground in my apartment building or on the mostly-level ground of the park.  Today.   She talked about me in the third person, giving out information both true and false that I’d never told her she was allowed to give.  And I didn’t — couldn’t — stop her.

One of the reasons that people in my position have such a hard time enforcing such simple rights as privacy, is because everyone acts like those rights aren’t there to begin with, like it’s totally natural to be discussing the intimate details of how someone’s body functions on a day to day basis.

And I can’t figure out how she figured she knew all those things about me, or could state them in the particular knowing but totally inaccurate way she did.  I have no idea not only how she decided she had the right, but how she decided she even knew me well enough.  She herself judged the interaction a success based on how curious this other woman was about me and how receptive she was to all the information I gave her.

What bothers me is that failing to provide the information did not even cross my mind.  That my staff, rather than doing what she’s supposed to do and actively displaying both to me and to the other person that I have a right to privacy, volunteered all sorts of information that I would have never given out on my own.  Partly because some of the information was dead wrong, and certainly not the kind of thing that a person could know about me in a day.

This feels like a less intense version of the time that two people stood in front of me touching me, talking about sex, and trying to get me into a car with them, and I didn’t realize what was going on until hours later, when I was at home and had time to figure it out.  Fortunately some of my instinctive responses at the time — not to them, but to other aspects of the situation — saved me from the fate they were planning for me.

While today was not as extreme, the sensation is similar:  Two people were being invasive and intrusive, not physically but in other ways, and I did not even think to stop them until long after I wasn’t talking to them anymore.  True, they were not being intentionally predatory the way the sex-talking couple were, but they were still being invasive, whether they knew it or not.  Not knowing something is wrong doesn’t make it right.

I don’t know what to do.  I don’t know how to explain this to anyone who’s never been there, in a way that makes sense.  Maybe this:  I’m supposed to be learning not to let people into my apartment just because they knock on my door.  Because of this, staff are supposed to knock and wait for me to open the door or tell them to come in.  They are not supposed to do what they’d done before, and just enter my apartment as soon as they got here.  In the same way as I lack the standard alarm at strangers entering my home, I also lack the standard alarm at strangers both asking me personal questions and talking as if they know things about me that no stranger could possibly know.  Just like staff are supposed to be making it easier for me to do things the right way with doors, they should be making it easier, not harder, for me to resist personal questions.  In fact, I bet most of them are trained to, because I’ve discussed this extensively with my case manager.

I still don’t know what to do.  This person now knows things about me, some of which almost nobody on the Internet knows and only a few people in the offline world either.  I don’t know anything about her other than that she’s a special ed teacher and what kind of dogs she has.  This seems uneven, disturbing even, but I don’t know what to do about it.  I especially don’t know what to do with the fact that she’s been given false information or at best half-truths about me by someone who doesn’t know me at all but apparently thinks she does.