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.

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.

This is as much a note to myself as anybody else.

Yes, overload is painful, but it’s straightforward pain. Even the general messiness of the first couple of days after this sort of major, sustained overload, is relatively straightforward.

It’s when things start to come back. And things start to come back in seemingly random order. And nothing in my head seems to be where I left it. For that matter, I can’t really remember who I am to begin with, I’ve got bits and pieces but no full idea here. And, I don’t entirely know what’s going on, despite the fact that I have general bits of the shape.

And I know this is only the beginning, it only gets more “fun” from here on out. At least, that seems to be true. From somewhere. I can’t remember where. I do know that I’ve been told this has happened before, and that this will happen again.

I suppose other people are reading this than me, so welcome to the post-conference brain, by way of explanation. Not some strange psychological state, but more like assault by a hotel that contained two weddings, a bar mitzvah, Lions club, and the conference.

Still working on the account of what happened there, heavily hampered by the fact that everything appears scrambled at the moment. I remember a friend who said that during a crash once, she did not understand why she could type seemingly coherent sentences in the particular cognitive state she was in. She said they made her head seem far more normal than it was acting. I understand what she meant, right now.

But I’m hoping that this will be further personal record, if nothing else.  Meanwhile I can only say that it would be nice if something made sense and was familiar.

People are posting what they remember of the World Trade Center attacks on September 11, 2001. Here is what I can remember at this point. (Note that research shows that we only think our memories of days like that one are better than our memories for other days, so I may get some of this wrong.)

I had watched “Wag the Dog” the night before, and flipped out at the forced drugging scene in a really nasty way for the person sitting next to me. My cat had spilled water on my only communication device at the time, which was now refusing to operate. I was going to do the unthinkable and go all the way from Watsonville to Cupertino California on a bus alone.

Bus trips are a big deal for me. I can almost never do them without them ending in one kind of disaster or another: Either I end up riding the bus to the station, or not getting off the bus when I should and being unable to get home, or freezing or melting down and getting the cops called, or getting confused, or any number of other things. There’s a reason I have a paratransit pass. But this day I was going to take the bus.

We wrote out a long list of detailed, step by step instructions on how to do all this, including showing things to the bus drivers in case I got confused or lost. I followed the instructions to the letter and hoped that my body would not blow everything by overloading: I had no English-using communication system at the time and very little way of showing I needed one.

We were going over the small mountain range that people in the area call “the hill,” on Highway 17, when a woman stood up and started shouting. I caught a few words. Something about planes. And a “second plane” at the “towers”. And something about targeting the Pentagon. I did not know what to think, and had no way of asking anyone anything.

On the next bus, I heard a large number of Muslims talking about what “this” would mean for the Muslim community as a whole, and what would be done to them, what scapegoating would happen, and so forth. I was not sure whether they were talking about the same thing as the first bus or not.

I was distracted on that bus by a driver who barely let me get onto the bus, and then kept trying to talk to me even though I couldn’t talk back. He did not secure my wheelchair properly, and I had to use every bit of muscle I had to keep from being flung violently forward whenever the bus jiggled. I was glad to finally get off that bus.

I found the building that sold Alphasmart keyboards. Someone commented something about the day, but I could not remember what.

I decided I had to figure out what was going on. I went by De Anza College, which was next door and had newspaper stands. I saw a disabled woman I remembered from the computer lab there. She looked at me but didn’t say anything. I went to get the newspaper, and there was nothing in it. I was now very confused.

I saw FBI agents everywhere, clearly marked as FBI agents. One of them talked about “closing down San Jose” and something about airports. They said San Jose might be a target and they needed to be prepared for this.

With my new communication device, I asked a man about what was going on but he wouldn’t tell me. He did help me get on a bus headed home.

I argued with the driver about whether I really needed my wheelchair secured or not. He told me he would not fling me forward, and I said that conflicted with my earlier problems on that bus. He agreed to tie my chair down.

As we were pulling out, I saw a man standing on a street corner selling newspapers saying “AMERICA UNDER ATTACK” in large, bold letters. I wished I had bought one.

I decided that the biggest possibility with all these clues was nuclear war. I panicked briefly, then reasoned that there was nothing I could do, panicking wouldn’t solve anything, and that if I was at ground zero in downtown San Jose I probably wouldn’t feel anything if we did get attacked. I quit panicking and decided to just do whatever.

I stopped downtown and had a lot of time to kill before I could get the next bus. The Tech Museum was closed for renovations, but there was a free art museum and I went in there. A woman at the door told me that she was amazed I showed the initiative to push my wheelchair with my legs, and that most people who came in there in wheelchairs didn’t use their legs. I tried to explain to her that many people who use wheelchairs are paralyzed, and I’m not, and I don’t have good upper body strength, so using my legs is not amazing. She continued to reiterate how much initiative I’d shown and how amazing I was. I quit bothering to try.

I walked around the museum, looking at various paintings. There was a guy in a wheelchair there who was definitely paralyzed and had gotten there before me. Every time I went into a room he got out of it as fast as he could. I wondered what that woman had said to him.

I got on a new bus. I asked the man seated next to me what had happened today. I should have known that to be useless by then.

He spent a long time trying to explain to me what words like “plane” and “twin towers” meant, and trying to explain in monosyllabic, short sentences what had happened. He didn’t make any sense at all so I figured I’d turn on the television when I got home.

When I got home, I smiled widely and uncontrollably and ran to the television. My friend tried to stop me and said, “You know what’s on that, right?”

I don’t remember the rest of the day.

I do remember noticing that everyone was talking about this as if it was a major revelation that someone was going to attack America. People told me they had lost their sense of safety. I ended up alienated from pretty much everyone in the aftermath of all this, because I had never felt that America was safe, from within or from without.

I viewed the world as a violent, dangerous, unpredictable place that could attack or kill you at any time, whereas other people seemed to have an illusion of total safety. I could function (in the ways that I can normally function) knowing about the real danger everywhere — even, for me, the danger of walking outside alone — but other people seemed to be breaking down over losing a luxury I hadn’t had for a long time. I knew that this was a horrible thing that had been done, but while I felt awful about that part, I totally lacked the element of surprise that so many other people were talking about.

Having not had any illusions shattered, not even emotionally, I was at a loss as to how to deal with the way people were talking about it in the aftermath. Still, at times, am. Nothing major in my view of the world changed that day, and that shocking change seems to be how most people think of the day. It disgusted and horrified and angered me, as it always does when people kill each other, but it did not shock me, because I knew this was a world in which people killed each other for all kinds of bad reasons.  My memory of 9/11 is more a memory of encountering so many access barriers that I could not find out what was happening, than a memory of my worldview being drastically altered.

(This was written sometime in 2005 or 2006, in response to a commenter known to me from the past who was attempting to convince me I was dying.)

There are people who have in the past tried to prey on the autistic community. Some continue to do so.

Some by verbal attacks. Some by stalking. Some by threats of violence and terrorism. Some by trying to mess with autistic people’s minds on purpose. Some by trying to find ways to take advantage of us sexually (imagining us to be like children in that regard, and some specifically target children and teens in the autistic community).

Such people’s comments will be deleted where I find them, and so far they are the only people whose comments I have deleted. Exactly one person has emailed me asking if they were such a person, and my answer to that person is that if they have to ask, the answer is no, and I would not have even considered that person when talking about this.

But this is also a warning, that there are people like that out there — some autistic, some not, some not and claiming to be. Not many, but the few are enough. Where there are people perceived to be weak, there are people who will attempt to exploit that weakness. Such people will find that I am not the easy target that I once was, or that they imagine me to be now. Such people will not receive a platform on my blog.

Comments from when this was a page not a post:

1. Lisa Cooper says:

   
   

   November 7, 2006 at 12:43 am

   This is not a reply as much as a request. I am 33 and have a 6 year old autistic son. I adore him for who he is, a cure would take away the wonderful things that make him amazing. What I am looking for is advise. The world is cruel to him out of ignorance. He is non-speaking but we have no trouble communicating as far as his needs and he shows me eveyday that he loves me. Please tell me in your opinion what the most important things I can do for him to make his life as happy as possible. People pity me for having an autistic child and pity him for what they think he is not or what he is missing in life. I think pity is very offensive, I fell blessed to have been given him and I feel he is very happy the way he is. But I am afraid that I do not provide something that he needs mentally because he can not tell me. I hope that I have not offended you in anyway. Your blog is an amazing insight to me. Thank you!
2. diana carr says:

   
   

   February 26, 2007 at 11:11 pm

   i am unable to email. tried for days to find away to email, just cant. please tell me how to e mail amanda. she has gotten me to study alot on autism. i like the knowlrdge i have learned. just need to see how to email. and can’t figure how.

   diana carr
3. Stephanie says:

   
   

   November 29, 2007 at 9:29 pm

   Amanda…you have no idea how many eyes you are opening. I am a mother of 4 healthy children and know exactly how lucky I am that they are that way…but I am also so lucky to have people like you out there who are willing to go to such great lenths to show and teach other people…that everyone is unique and special. Just because we don’t all look, talk…act the same way, doesn’t mean a dang thing at all. Thank you again!
4. Pi says:

   
   

   December 3, 2007 at 10:35 pm

   Wow, I just finished reading some of your work on instutionalization. My family has been going through mental illness treatment in one form or another for six years, since I lost my father to Zoloft. My mother (who was institutionalized) tried to help us understand, but it was all confused and difficult to comprehend. Your words helped me get a better perspective on what was happening while those of us on the outside waited. I still don’t know what we could’ve done differently, as some of her behavior was very unsafe. Having just lost my father to a mental illness, the least I was willing to settle for was keeping mom safe and at least giving her time to heal. The way you described your feelings helped me to understand a bit. Thank you for sharing your insight. For what it’s worth, those of us caught trying to understand the system, unable to access records, get information, or otherwise get involved in order to protect loved ones during episodes of extreme distress are at a loss and not allowed much control either. No one asked me about what I thought might help mom, and the only source of information was drugged.
5. ballastexistenz says:

   
   

   December 3, 2007 at 11:23 pm

   Yes, my mother said that one of the biggest problems she had when I was in the psych system was that she wasn’t educated enough or savvy enough about the system to figure out what was going on or how to genuinely help me.

   I really think there does need to be some place that people who’re experiencing severe distress or other things like that, or unable to function because of that sort of thing, can go. I’ve wanted that myself at times when I was clearly likely to harm myself in serious ways, but there were no options for me since the system would harm me in itself, maybe even kill me. The main problem is that the system is often less safe than outside the system. :-(
6. Yushyu^Amorpha says:

   
   

   December 4, 2007 at 3:50 am

   Yeah, and sometimes you find that while “alternative resources” (to the system) exist, they’re locally restricted and you can’t get in touch with them, for reasons of either geography or money. For instance, the Hearing Voices Project has a hotline in England, for people in a crisis because they’re hearing voices that upset them, but a friend of mine went looking for something like that the US last fall and couldn’t find it, when he was hearing a voice say things that upset him. (He eventually tried talking back to it on his own and it’s mostly gone away, but he would have appreciated some support, from people who didn’t define “support” as “stuff you full of pills.”)
7. Ivan says:

   
   

   December 4, 2007 at 2:26 pm

   Pardon my cynicism……..

   perhaps our society won’t wake up to the fact that our psych system is “botched” up……and fix it……….

   because doing so just makes too much damned sense……and therefore must be vewy vewy complicated……..

   Perhaps society thinks that every sensible alternative costs money……….someone wants to keep us dumb these days………..and those of us who don’t fall for it……..can only do so much about it……..

   Ivan
8. david miedzianik says:

   
   

   August 28, 2008 at 10:54 am

   MESSAGE FROM DAVID MIEDZIANIK: i wrote my autobiography years ago: i have aspergers syndrome: i’m bob dylan’s greatest bbc radio request writer: THE CONNECTION: ST MARTIN IN THE FIELDS: LONDON: i’ve always wanted bob dylan to do that song about me his best fan: