Tuesday, May 18, 2010

The Incapable Man

I

Incapable of returning love. In the Philippines, in Mandaluyong City, a party is held to celebrate the telling of the story. He is forty-four. The book was his mother’s idea and she conveyed the story to its authors. A party is held in lieu of a wedding. This man will never be married, incapable as he is of returning love. The article telling the story of the party for the biography of the man who will never marry, who is incapable of returning love, is filled with references to unconditional acceptance. Unconditional love. The value of autistic people is mentioned. Someone is trying.

I read the story. I read it again. I think about it for days, I can’t let it go. Incapable of returning love. People have said things about me; more often, I have seen things. In their eyes, like a mix of confusion and anger, compassion and pity. There may be a word for this mix, but I don’t know it. These looks happen far less often than they used to. After all, I have had 50 years to learn how to make myself understood.

II

“Andrei paints, reads, plays a portable organ and xylophone. He has the comprehension of a second grader, but paints like a pro.”

The story says so. What is music, what are painting and poetry made of? Not only talent, not just skill, but emotion and comprehension are components.

Growing up, the arts saved my life, over and over. This is not hyperbole. While half of the bookshelves in my room filled with volumes on death and suicide, no one seemed to notice. Placing objects in a room is not considered standard communication. The other shelves contained books of modern and contemporary poetry and art. For years, these were my closest friends, quietly agreeing that nonstandard ways of communication held value. “So much depends /upon/ a red wheel/barrow/ glazed with rain/water/ beside the white/chickens.” This poem was much like the way I talked, the way I thought, and this poem was important. Evocation of the Apparition of Lenin was important. Rothko’s paintings meant something to me. Pollock’s did. Not something translatable. I was not alone.

III

I turned 50 last month. A party was held. I invited some of the people I care about, as many as I could afford to entertain, as many as would fit into the room. I designed invitations, shopped, prepared food, arranged activities and music. Other people helped too, assisting with the last minute food preparations, and designing an elaborate menu of mocktails to go along with the mid century theme I had chosen. Still others helped by keeping the party social, remembering the things I tend to forget, the introductions, the place to hang up the coats.

Placement of objects in the room was intended to communicate. To explain in words what the styles of the late 1950’s through early 1970’s mean to me, I would risk being tedious and dull. Do you really want to hear why I think that Noguchi table represents the malleability of hope in the face of mortality? Or that the starburst clock, encompassing at once the tragedy of Hiroshima and the promise of space travel, makes an eloquent statement on humanity’s relationship to technology? The party offered an opportunity to paint the picture wordlessly. To show it. To share something about myself with the people I care about, to have them enter a place in my imaginary world. By which I mean real.

IV

The book talks about the ways in which an autistic child is accepted and nurtured with unconditional love despite the dam of a mental handicap separating him from others.”

The separating/dam. What does it mean for a person who does not like being in large groups, who prefers even solitude, to host a party? This is not a rhetorical question. Because I worry that it might mean self-indulgence. In the dominant language. To invite people to try enjoying the things I enjoy, maybe this is not called “sharing” but “demanding” something of people. I worry that it is wrong to celebrate my survival. I worry that it is seen as wrong to communicate in my own language. In the past, I have seen things. I worry. Anything I say or do might be evidence.

More goes on in the minds of others than can be demonstrated or seen. My mind. Andrei’s mind. Your mind. There is a genetic agreement that smile means happy, that tears mean sad. When you don’t see these signs, you may assume that emotions are also lacking. When an answer is not given to a question, you may assume the one questioned does not have the information. Or has the comprehension of a second grader. Or does not wish to communicate with you. The assumption is automatic, yet comes packaged with the opportunity to question. I might have assumed that my family, not reading my signals, wished I would kill myself. That would have been incorrect, though I had communicated and they had failed to respond in kind. We never did speak the same language. And love? I have had to accept over and over that it will not come in the ways I expect, but in the native language of the ones bestowing it. Like Andrei’s parents, like anyone’s parents, I must constantly adjust my expectations. This is not my hardship or your handicap, not a cause for self-congratulation. This is just the hard work love is made of.

20 comments:

  1. I was recently at an autism conference, where numerous problematic things were said, but one comment in particular just infuriated me. This speaker was extolling the value of autistic people taking liberal arts classes--an unobjectionable principal, to be sure. I strongly believe in the value of liberal arts education for everyone, regardless of neurotype. But here's how this speaker put it: [roughly paraphrased] "You may ask yourself, why would a person with autism need to know about Shakespeare or the Civil War? Well, with autism, there are deficits with empathy, we know. They say that in the whole range of human emotions are in Shakespeare. So perhaps studying Shakespeare can help with the empathy deficits. As for the Civil War, how inspiring would it be to know that all of these people fought and died for civil rights..."*

    When I heard this, I just felt rage. Because apparently the only reason why it's worthwhile for us autistics to study "useless" subjects like literature and history is so we can learn about empathy from the nice neurotypical people. Apparently our education for its own sake just isn't a very important reason. (This person also seemed to be operating under the stereotype that we should all be shepherded into tech-y careers.) And yes, I know that even neurotypical people who pick liberal arts majors often get grief from other people who think these subjects are "useless." But to hear a person who is supposedly devoted to helping autistic people get post-secondary education speak of us and the value of our education this way is just jaw-droppingly offensive. We couldn't possibly be interested in learning about Shakespeare and the Civil War for the same reasons everyone else is. No, the only reason why it's at all worthwhile for us to learn these things is because they might help "fix" our supposed deficits in empathy and emotion.

    I think this person had serious deficits in empathizing with autistic people. Grr.

    *Not an accurate summation of the Civil War, at all. I think this person could do with a few history classes himself.

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  2. For what it is worth, I think that this is a beautiful piece of writing. Congratulations.

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  3. Beautiful essay!

    It's aggravating that the arts being taught in schools are still seen as not necessary in many places. Way undervalued more than sports, the entire sports v. arts in the schools rather exemplifies to me the chasm between the NT realms and creative/autistic realms.

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  4. Happy belated birthday, Bev!

    "Do you really want to hear why I think that Noguchi table represents the malleability of hope in the face of mortality? Or that the starburst clock encompassing at once the tragedy of Hiroshima and the promise of space travel, makes an eloquent statement on humanity’s relationship to technology?"

    I know it's (probably) a rhetorical question, but YES!
    That sounds absolutely fascinating.

    @Sarah, wow that's just awful!

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  5. Sarah,
    Deficits of empathy indeed! I mean who the hell wonders why "a person with autism" would need to know anything about Shakespeare? Assuming they are in college or on their way, why wouldn't they? And yeah, it sounds like that speaker slept through U.S. History class...sigh.

    a girl called dallan,
    Thank you!

    Nanne Binghi,
    Thanks! Yeah, I have quite a few people in my life who see art as frivolous. They understand when I tell them my story, but they go right back to thinking of art as something less than necessary. I don't see this as splitting along autistic/non-autistic lines, though.

    Kowalski,
    Thanks for the birthday wishes! That would actually be a very fun essay to write (and illustrate with photos of stuff I love). When I get the time, I'll take a stab at it.

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  6. Beautiful, lyrical, lovely. Happy birthday, Bev. I hope everyone drank in the objects, their significance.

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  7. Just another beautiful "Excursion in thought". Thank you for this essay, and a belated Happy Birthday!

    In my ethics classes I have come across numerous individuals who assume incompetence based on a label, and seemingly fail to believe the studies that show that disabled people have a much higher self rating of the quality of their lives than their lives are rated by "professionals" who interact with them. Essays such as this are a good counterbalance.

    Joe

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  8. Happy birthday, Bev!
    Another keeper of a post.

    A propos art --

    I wrote the following as part of my comments on the proposed DSM-5 autism language (regarding its failure to acknowledge the centrality of sensory processing atypicalities in autism):

    [Autistic sensory processing atypicalities] inform not only behavior and socialization, but also *aesthetic sensibility*: the appeal of pattern, sequence, rhythm, order, repetition, variations-on-a-theme, and so on, that ASD individuals incorporate into their lives. These aesthetic features permit parsimony of scarce processing bandwidth: the patterns predict the (ignorable) bulk of the input, so that attention can be paid to the exceptions and outliers. Such incorporation of aesthetic desiderata into one's life for purposes of comfort and self-orientation, when done by people *not* carrying diagnostic labels, is the participatory backbone of what we call "art" and "humanities". Think carefully the next time you view an Andy Warhol: there is a reason that his soup cans, Marilyn Monroes, auto wrecks, and so on, come in ordered multiples with variations of a single characteristic.

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  9. @Sarah: "I think this person had serious deficits in empathizing with autistic people."

    So many nonautistic people do. :-(.

    "Theory of mind deficits in autism" are in many respects an artifact of privilege-of-the-majority.

    I said more about that, a few years ago, here.

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  10. Happy Birthday Bev.

    This is a beautiful and moving post that I will read a few times and think about.

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  11. No time right now to read the comments, no time even to follow the links in your post, hurrying to get ready for work. Just wanted to say very quickly:

    Put this in your "Starting Squares" list! I think it belongs there, one of your best posts and says something critically important.

    Back later,

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  12. That was a lovely essay. Thank you again for sharing.

    I just know just six autistic individuals, and only one of them is a teenager, the rest are much younger. If anything, they over empathise and are able to read the emotions of the people in the room better than others. But they will not express this in any typical way. You can read their concern for your emotions if you pay enough attention, and understand their language. The teenager I know will make a particular sound every time I visit him or refer to him in a conversation when he is in the room. It is his "happy sound". My son is much more subtle and constantly suprising me with his level of comprehension.

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  13. this is a beautiful post. I'm not sure if I've commented here and just expressed how wonderful I think your blog is in general and how grateful I am for its existence. But it's just really sensitive and smart and different from anything else.

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  14. Happy birthday.

    I also communicated best by arranging objects. Only one person noticed. Ever.

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  15. Bev, I do not know well any autistic people, but your writing really resonates with me, and has this combination of logic and emotion -- it's moving and crisp and full of insight. This post is great. Like someone else said, I will revisit this post too.
    It is full of sensitivity, empathy, intelligence, all of which are communicated perfectly. Maybe you should write a book?

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  16. Someone should write the sad biography of the mother of a forty-four-year-old man, the mother who is incapable of seeing love expressed in nontraditional ways.

    While on the value of reading Shakespeare, I'd point to the first Act of King Lear. Lear's elder daughters profess love through flattery, expecting to be rewarded. His youngest daughter Cordelia truly loves Lear and is unable to trivialize her love with flattery. (So of course, Lear throws her out, splits the kingdom between his elder daughters, and misery and death follow.)

    Point being: Subtle cues from my AS kid and my NT kid mean a lot more to me than the professions of love which come from my NT kid when he wants something.

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  17. Thank you. Thank you so much.

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  18. The way you wrote about this is so beautiful, so stunning, so humbling... I am sitting in a frozen yogurt shop, reading it, crying. Thank you for this.

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