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. 

Ivar Lovaas, talking about autistic people

This is the type of really terrible quote I’m trying to document in this tumblr and the related blog.