Feb
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. 

 
Dec
05, 2011

The woman who lived in the bed next to me on the right had caught my eye the first day I came to Ward 4. As the days passed, I spent more and more time watching her. She was about sixteen years older than I, her facial characteristics were different from mine, and she was taller. But in other ways she was my physical duplicate. Her name was Theresa Ladue.

Theresa, too, was a victim of cerebral palsy. Like me, she could make sounds but couldn’t speak, and had limited movement of her arms and legs. The first time I saw her, I knew that inside Theresa’s crippled body there was a sharp, alert person. I saw it in her eyes and heard it in her voice. Within a day or two, I realized that lying next to me was the first person I had ever seen who matched me closely in abilities and disabilities. Watching Theresa showed me how I must look to other people. But what fascinated me most was the challenge of discovering what kind of person lived behind those unmistakably intelligent eyes.

My first clue that Theresa was unlike the others on the ward was that she constantly studied what went on around her. Along with this, I noticed that her sounds weren’t just random noises; they indicated her moods and responses. Since this was precisely how I used my own sounds, I picked up on it right away. As I watched her more carefully, I saw that Theresa was watching me too. In fact, she was directing many of her sounds at me, looking for a response in kind.

After several days Theresa and I let our defenses down and stopped sneaking looks at each other. We began to gaze steadily at one another, making sounds to enhance the process of becoming acquainted. I would watch Theresa and she would watch me right back — not in a hostile way, but with friendly curiosity. As we became more comfortable, we began to “talk” to each other more and more through sounds and facial expressions. Before long we were sharing our opinions and feelings about living on the ward.

Late one night during my second week there, Theresa and I were engaged in a silent conversation with our eyes. Most of the residents were asleep, and it was quiet. Although the ward lights were off, we could see each other’s faces from the light in the hall.

Suddenly a remarkable spark passed between us, something that no one watching us would have been able to perceive. Theresa and I experienced it simultaneously: a riveting, deeply moving flash of complete understanding. At that moment we became aware of the extraordinary insight we shared, knowledge that no one who was not just like us could possess. Both of us were painfully aware of what it was like to be trapped inside a body that followed few directions of its mind and ignored the simple commands of speech and movement that nearly everyone takes for granted. We knew what it was like to be unable to express even one thousandth of the thoughts whirling inside our minds; what it was like to be unable to walk, or even feed ourselves; what it was like to be treated by most people as an oddity, a quirk of nature to be gawked at and given a wide berth; and what it was like to live on Ward 4 of the Infirmary at the Belchertown State School in 1962.

We both knew what all of this was like — completely.

As our mutual recognition of that knowledge emerged, our souls embraced. Our eyes locked for several exhilarating, magnetic, timeless moments. Then Theresa turned her head and nudged the yellow teddy bear lying beside her pillow. Making quiet, gentle sounds, Theresa repeated this gesture several times until she was certain I understood. By indicating her teddy, the only object of affection around her, she was telling me that she liked me very much, that she was beginning to develop a profound understanding of me.

At this, my face lit up in delighted verification. I responded with loving sounds of my own, and raised my eyes in an emphatic “Yes!” to make sure Theresa understood that I felt the same way about her. At that instant Theresa figured out what none of the staff would decipher for several years: that I raised my eyes to say yes.

From that moment on, Theresa and I were close friends. We took advantage of every occurrence on the ward — movements, feedings, changing, noises, outbursts, periods of total boredom — to exchange glances, facial expressions, and sounds. In this way we developed our own special language, evolving it slowly over a period of three or four months. After countless hours of careful study, we were able to fashion a basic, yet effective, system of communication.

[…]

Often we failed in our attempts to communicate. By the very nature of our conversations, Theresa and I couldn’t always tell whether a message had been interpreted correctly. Even when one of us signaled that we got the point, it was still difficult to be sure. We relied on eye contact and intuition to confirm our messages. Sometimes an unmistakable sixth sense told us that the communication had been successful, but there were many times when, after endlessly repeating a message, one of us could tell that the other one didn’t know what the hell we were talking about.

Half the battle was to keep the topic of conversation within the limits of what we reasonably could expect to tell each other. For example, it would have been impossible for me to tell Theresa exactly what had happened with the lobster at my tenth birthday party. But if Mother mentioned something in a letter about my birthday, I could tag that with an expression or sound and comment later on the general subject of birthday celebrations at home.

Another factor to consider was that the more we talked to one another, the more we honed our understanding. Call it intuition, nonverbal communication, ESP, or whatever, but there were occasions when we stared into each other’s eyes and communicated messages without making any sounds, expressions, or signals of any kind. In these instances our eyes did all the talking… and all the listening too.

Theresa had lived at the State School for eight years when I arrived, and she helped me through the initial shock of the woeful scene on Ward 4. in return, I eased her pain and frustration by sharing the experience of being abandoned among thirty confused and suffering women while denied the opportunity to speak, move, or be recognized as possessing even a shred of intelligence. Together, we at least attempted to overcome the fear and frustration that filled our days. It didn’t matter that sometimes we couldn’t understand each other’s messages, or that there were some things we could never tell each other. What mattered was that we each had someone who was trying to understand, someone deeply interested in our feelings and willing to share those feelings totally.

Ruth Sienkiewicz-Mercer, I Raise My Eyes To Say Yes

This expresses better than anything I’ve ever seen, what it’s like to meet someone who shares your physical and/or mental systems so exactly (in a world where nobody does), and what it’s like to establish a form of genuine, un-staticky communication with that person. Both of the people involved were diagnosed with profound intellectual disabilities and presumed to have pretty much no inner life at all, and left to lie there all day on beds in a large institution with no outside stimulation. That they presumed others unlike them didn’t have much of an inner life either… unfortunately that happens more often than not when people honestly believe that the assumptions made about them are wrong about them but right when made about other people. But other than that one quality cropping up a lot, this book is excellent at showing what it’s like to carve out a life for yourself in a place where practically nobody thinks you have any significant inner experience of the world or contributions to make.

 
Nov
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

Description

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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Copyright

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