17, 2012
A long time ago," she said, "when I was just starting my training, they were taking us around to various facilities to show us the way various kinds of medical treatment were being implemented for people with different kinds of problems. I was"—she laughed at herself—"a pretty tough cookie, or thought I was. They showed us all frightening things—things that really upset some of the other students—and they didn’t bother me. I was kind of proud of that. Then, one day, they took us to a school for people with mental disabilities. Very young children, mostly. Some of them were well enough to ride around on little trikes or say a few words. Some of them weren’t that well at all. Most of them weren’t. There was a big playroom, and there were children there who simply stood against the wall—one or two who couldn’t be stopped from hitting the walls, so the walls, naturally, were soft. And there were a few who just stood, or sat, and looked. Looked out into space, didn’t see anything, didn’t hear you when you spoke to them. And it just hit me, suddenly, the waste of it all, the sheer waste. Here were children at the beginnings of their lives; they should have had everything to live for. Everything. But a misplaced gene, or a misdiagnosis in utero, or something else—in each of their cases something had gone wrong, something that not even our medicine could do anything about, not all our drugs and treatments and know-how would ever matter. Otherwise they wouldn’t have been there. Calling the place a school was a dreadful misnomer, or whistling in the dark, at best. Certainly these children had committed professionals around them, doing everything possible to make them comfortable, giving them affection and good care…but it would never matter. None of it would matter.” Crusher kept walking quietly. “And I broke down,” she said. “I cried for almost an hour—I just couldn’t stop. They had to take me away and calm me down, and for the next couple of days I would just start crying again, without warning, at the memory of that place. All my instructors were worried about me. I couldn’t explain to them that it was simply because, in that pretty, sunny building I had seen the most horrible thing in the world. Human beings without the thing that makes them human, without minds. Creatures meant to be thinking beings. What’s the line?  ‘A little less than the angels.’ And there would never be anyone inside, no matter what we did.

Dr. Crusher, in Intellivore, by Diane Duane.

This was really hard to write. The pain from this one felt far too intense and personal, largely because I trusted this author not to do this to me.  But also because I’ve heard so many people tell me, or people around me, this story.  Just thinking about it makes me want to cry and never stop (for very different reasons), so I just avoided writing this for a long time. 

This was written by an author who wrote a series where rocks and air and trains and everything in the world is sentient.  I’ve read pretty much everything she’s ever written.  And nothing prepared me for this.  It was like being punched in the stomach out of nowhere by my best friend.  It took me a long time to look up the quote again because it hurt more than any of my other quotes have ever hurt me. I let my guard down and this is what I got. 

I want to be able to tell you all the wrong assumptions in there, like assuming that lack of response is lack of sensory input is lack of conventional thinking is lack of thinking is lack of humanity. But every time I have to concentrate on what was said I start to cry.  And I’m sure I’m crying much worse than this character ever did. 

I want it to be just the character but it’s not. Having read all her books I know it’s a pattern. This book is the worst. But all the parts, from the huge ones like this to the throwaway lines, hint at her knowledge of cognitive and developmental disabilities being heavily tainted by prejudice.  

And I’ve heard stories like this before many times from medical professionals. And she was a psych nurse so I know at minimum she’s heard them at the most — I hope not — she’s gotten this out of her own experiences. Something about this feels deeply personal — if not to her then to someone. Nobody can make up this experience in this degree of detail from nowhere.  And I’ve never seen her get any kind of developmental disability right, ever. 

Dr. Crusher’s speech here is only part of the problem.  She made the speech because of a monster of some kind that deletes people’s minds, leaving the brain intact but the mind gone.  And she connects the two things as if they are the same.  There’s two things that really bother me about the monster. 

One of them is that the monster was created as what it is. As in, there’s nothing in the world that can truly do this to a person. The author had to write it that way because it couldn’t exist any other way. And yet you’re not supposed to notice that while you’re reading. You’re supposed to accept this as a possible thing at least within the story. And it’s not possible, it’s an empty fear. 

And that fear is the second thing that bothers me. Because this story wouldn’t be scary without it(*).  And using the fear of cognitive disability to write a scary story offends me.  For good reason. 

But people have this fear.  And to them it is the scariest thing in the world. People base their identities on thought, and on certain kinds of thought.  They fear losing it. They project this fear onto anyone they see as having lost it, or never having had it. They want laws passed to make it possibly to kill people seen as lacking minds. They write living wills saying they want to die if they acquire a cognitive disability and then are shocked when, after they wake up in the hospital after brain damage, medical professionals tie them down so they can’t get up seeking food or water.  (Yes, this happens.  And worse.)  They write stories about people losing their souls, or minds, either has the same effect. 

And now I can stop the impersonal explanations. 

People have told me these stories expecting sympathy.  Because they know I’m cognitively disabled or because they know I’ve been in mental institutions. Why they think that gives me more sympathy I haven’t a clue. 

But worse. 

People have reacted to me in this way. 

To me in person. 

To photographs of me. 

To videos of me. 

It’s not worse for me to hear that because (they think, you think) I really do have the right kind of mind after all. You likely don’t know what it’s like to have your emotional vulnerability ratcheted up by the absence of concepts and words.  When someone reacts to your very existence with terror or rage, it’s like it stabs straight through you, and yet you can’t necessarily even move in response. It’s so much the opposite of “It’d be okay to react this way if you really couldn’t understand,” or “It’s wrong to react this way because you really do understand.”  Thoughts and ideas can actually create somewhat of a barrier between you and someone else’s feelings about you. 

But it’s worse than just how it feels when people react that way to you.  It’s that when who you are (including what people imagine someone like you is) is people’s worst nightmare, then terrible things happen to you.  Again, it doesn’t matter whether you “really don’t think”(**). All that matters is that they think this of people who look like you.  They’re not usually going to do the kind of brain scans required to, say, pick up language comprehension in someone considered to be in a PVS, before they start thinking of euthanasia. And if they do pick it up, their thoughts may go to euthanasia faster, because their second-worst nightmare is to be “trapped in a useless body”, especially in the horrific living conditions most people in that situation are given in most societies.  But they don’t think of changing the living conditions, that would make too much sense. 

One huge problem with diagnoses like coma and PVS is that they’re just like the people in Intellivore: pre-written as having no mental activity, regardless of what’s actually going on. When people are later able to report being conscious or semiconscious during such states, it’s more often thought of as “You were misdiagnosed” rather than rethinking what it means to define a person’s ability to think based on their responsiveness.  (And yes I personally know people who were conscious during both.)  And of course once you’re defined as unable to think, people don’t see your responsiveness as meaningful anymore — it doesn’t matter if your diagnosis is coma, autism, PVS, profound intellectual disability, severe catatonia, or dementia.  Once that point is reached it’s a vicious cycle. 

And even if you have something considered milder than a total lack of thought, people can still treat it as virtually identical. I have known people who literally believe it’s impossible to communicate with someone with an average IQ let alone a low one(***).  Or that even if they could, there’d be nothing to talk about.  What the fuck, people?  But views like that are not uncommon, especially among people who have never (knowingly) bothered to try.  And there are plenty of people, even people classified as such trying to escape such classification, who associate “retarded” (that’s inevitably their wording) with “having no mind”.  The same goes for just about anything else that affects cognition:  Some people will see even people mildly affected as nonpersons, and some will see them as… semi-persons?  So the danger isn’t gone once you can talk and do various other things. 

Anyway, I’ve rambled enough. I cannot emphasize how awful hearing these stories feels.  Whether they come from a Star Trek character or a real live person. They’re always pretty close to identical, and they always project people’s terror of nothingness, onto real live people who pay the consequences.  I have to pay the consequences all the time, so I just can’t get into people’s pain over my existence.


(*) In fact, it wasn’t scary to me. Or… it was scary but not because of that.  I was afraid the Enterprise crew would “mercy kill” the “people without minds”. I was afraid of the prejudices conveyed. But aside from that the story was almost laughable, because I lack the fear it is based on.  A lot of people think its not her best writing. But unfortunately not for that reason. 

(**) Don’t get me started on the many definitions of thought, and the prejudices many human beings have against the kind of thought and learning that takes place in the deeper areas of the brain.  Which is somehow inferior. Even though it’s actually a lot of where thought and learning can take place.  People are so quick to think that a certain kind of abstract thought is all that matters. 

(***) People who say this to me generally don’t know my IQ. As of ten years ago, it was in a range that’s now considered borderline and long in the past would be considered intellectually disabled.  The tester was stunned how high it was, and said so. Which told me a lot when I finally ordered my results years later.  On another day, in other circumstances, it could have gone much lower.

The slipperiness of my cognition is one of many reasons I don’t believe in IQ as a fixed measurement, let alone anything meaningful in the first place.  It horrifies me that a test score on one particular day of your life can determine things like… Whether you go to a bunch of classes that give you enriched learning opportunities all students should have while teaching you you’re better and more deserving than other students, or whether you go to classes where you learn nothing while others learn to treat you as barely human.  I’m one of a handful of people I know who’s at varying times in my life been put into both of those educational extremes. From gifted programs, to being sat on a chair and tilted backwards so I wouldn’t fall over and drool, while others in the same room got more instruction but not that much more.  And I think that gives me a fairly unique perspective on these things.  

I want them all abolished, both ends of things (neither could exist without the other), and something new and useful created instead.  Like people learning from each other instead of being ranked against each other.  Like the enriched learning experiences I was given in my nine years classified as gifted, being available to everyone:  I don’t see what IQ should have to do with getting to attend small seminars where someone teaches you about their job or an interesting skill.  And, of course, I want the end of all IQ testing ever, and all the disablist racist classist bullshit associated with it.  But I doubt enough people will listen. 

30, 2011

Memoirs on autism also frequently mention the parents’ distress at seeing the spark gradually go out of the eyes of their child as language skills regress and he or she retreats into a self-enclosed world—the dreaded prison of autos, the root meaning of autism.

We took my son on a pilgrimage to the Bronx for an evaluation three months after he had a frightening regression in March. He had been receiving early-intervention services for three months and was improving, and then the light in his eyes began to go out. He stopped looking in my eyes, and when I caught his chin in my hand to look in his face, there was nothing there. He was irritable and spun in circles most of the time, and when he did sit down, he kept pushing the same button on a musical toy over and over and couldn’t be engaged. He didn’t even like his beloved books anymore. My son was gone—there was no spark in his face, no sign of life, just dead eyes.

Little Boy Lost by Amy Leal

I’m a so-called “regressive autistic”. I lost language skills when I was a small child. I also experienced something rarer, in that I also lost a bunch of different skills including speech, gradually starting in early adolescence.

Thing is, I’m still here. I’m not dead even though people have described my eyes in that and even more offensive ways. I would still be here even if I lost the typed language that I still have. The essence of who I am does not depend on facial expression, on my ability to command my body and have it do my bidding, on whether I have access to using or understanding any language at all. In fact, during the time period when I began losing skills, something else was going on. I was getting more in touch with who I really am. The skills that I find the most important — skills most people can’t even fathom existing — have been honing themselves more and more over time. Some of this is not coincidence. Some of what is required to use those skills is the absence or lessening of others.

But even if the things most important to me were not becoming stronger. Even if who I am was not being distilled down to a more and more intense essence with every passing year. Even if I was not becoming happier, more ethical, more in touch with the world around me in ways most people can’t imagine. I would still be a person. I would still be myself. I would still have life, heart, love, and soul thoroughly intact. And it would still be really fucking offensive to refer to people like me as if we were dead, not really there, and losing ourselves, just because we move or communicate or think in ways different than we used to.

To quote a good friend of mine, also autistic: I’m the one who has to live with the stereotypes you are trying to build. I live or die depending on whether people think I’m actually still here or not. No really — live or die. Already survived one attempt of murder-through-neglect by people who were tasked with taking care of me. They thought the real me was gone too. They wanted me to not be in their mental institution because they would rather treat people who were going to get better. They said these things openly in my presence because I was not enough of a person for them to care. Across the world, autistic people die all the time. Often at the hands of caregivers and parents. When you make us sound less human, less alive, less ourselves, that has the same effect it has on any other group of people: Our lives matter less. People openly kill us because we are not the people they think we used to be, not their real children anymore. So when you say things like this it’s just one more piece that tips things in the direction of our unpersonhood.

And even when not life and death… some of the worst things anyone has said to me were things like “I want the old you back.” The me who was able to do more things. Because people want me to at least seem less disabled. And there’s this thing where who I am now is never good enough. They want the old me. Even if that’s the me who was truly lost and confused. Even if that was a horribly unhappy time in my life. Better to be unhappy and “higher functioning” than happy and “lower functioning”. It tears my heart to pieces when people want the “old me”, no matter how innocent they think it is. (It also suggests they value form over function: Someone who can speak but barely communicate is apparently better than someone who can communicate but barely speak.)

This is all so close to home that it terrifies me. In a world where people like me are already dehumanized. Which leads directly to abuse and murder even when the dehumanization is unintended as such. We can’t afford for people to be spreading this idea that when we “regress”, we lose who we are and all signs of life. And seriously… have you ever had anyone tell you your eyes are empty and dead, your face shows nothing there, you are clearly missing out on what life has to offer, you have the cognitive functioning of an infant, there’s no person inside you, you’re just an empty shell? Because I have, to my face, and it’s more horrifying than any loss of skills could ever be.

07, 2011

This Pisses Me Off

When a condition:

* Incorporates lack of consciousness into its definition
* Measures lack of consciousness by physical responsiveness

And then.

It’s found that some people, diagnosed the exact same way as everyone else, show that they are conscious while diagnosed with this condition. This may happen by brain scan (showing movement areas of the brain changing when asked to move, or things like that), the person after “waking up” recounting things that happened while “unconscious”, lots of other things.

And then.

Instead of admitting these states don’t truly have to mean unconsciousness.

Professionals respond by retroactively undiagnosing such people, and continuing to treat all others with the condition as unconscious. With serious consequences (like death) for those so diagnosed.

For instance: coma, persistent vegetative state. Lesser examples (where people are generally regarded as conscious but not as conscious as other people — and still may defined as nonpersons by certain icky philosophers) can occur with diagnoses like autism (or “severe” autism) or severe/profound intellectual disability.

24, 2011
Bar conversations are iffy at best. But, I’d fallen into conversation with a couple and we were talking about a variety of issues. I illustrated a point I was making by referring to a television commercial that’s playing here in England about child abuse. In it a diversity of children are presented, of course, as usual, diversity did not mean disability. Even though children with disabilities are more likely to be victims of violence than other children, none were represented in the commercial. ‘Well, of course, not,’ said the young man, ‘because you can understand why a parent would want to hit a disabled child.’ I was stunned, he continued, ‘you raise normal kids, you feed disabled ones.’ I said, ‘Seriously, you are seriously saying this to me?’ I thought maybe he was just trying to wind me up, but a couple seconds more of chat, and it was clear, they’d received the message that disabled people are simply ‘useless eaters’ - echos of a different time are still chilling.
15, 2011

When considering making contact with people who have multiple disabilities — those who are considered to be so significantly mentally disabled that they are in a “vegetative” (that’s what it’s called) state — there is a huge obstacle. Prejudice. Yours. Mine. Ours. Against them. The difficulty here is that prejudice will feel like pity. You may be overwhelmed by a sense of hopelessness first, and then, if you examine the feeling long enough, terror.

They can’t be “like us” because then the logical extension of that is that they must be “feeling in there” and what they are feeling in there is what we’d be feeling in there — desperation, hopelessness, isolation, loneliness. The misuse of your sense of identification with the person inside that body will lead you to think horrible thoughts.

Dangerous even.

"I’d rather be dead than be like that."

"If I was like that I’d like to be smothered."

Well, back off. This isn’t about you. Catching a first glimpse of a soul inside a body that is so different from your own can be frightening, true. But it can, if you work hard enough, be exhilarating. I know, I know, I know, you have to “walk a mile in their moccasins.” The temptation is to engage in an incredible waste of time and psychological energy — spending time imagining what it would be like to be you inside them. How egocentric is that?

The issue is coming to understand and to get to know what it’s like to be them, in them. That’s the joy of contact, of connection. It allows us other perspectives. The placing of ourselves inside someone else and then imagining what it would be like, is not learning — it’s like masturbation but without the stickiness. And while it’s fun, and it is fun, it’s not particularly valuable.

And it gets in the way.

How can you make contact with someone when all you see reflected in their eyes is your sad face? Get out of the way. Understand that you are you. You are only you. Now look again, look past your own reflection and what do you see?

The answer?

Some one else.

Cool, huh? Even cooler is to discover who that person is. To do this you need to step by prejudice. Please, please, please, don’t delude yourself into thinking that you don’t harbour anti-disability sentiments inside your heart. Please don’t say, “but my child…” “but my best friend is…” or even “but I’m…” We everyone of us is prejudiced against those who are different. Awareness is the first step.


Beyond Empty Shells


Documenting some of the worst of disability prejudice -- the idea that some of us are "empty shells" -- and the reality behind that illusion.

Expect awful, nightmarish quotes, as well as wonderful quotes from people who really get things right, and interesting quotes from people who make you think..

For more details, see About.

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