Friday, July 10, 2009

Perspective taking

Here is an article in which a father pretends to take the perspective of a six year old boy diagnosed (er…I mean…afflicted) with PDD-NOS. Like a puppet, the child is used to express the worries and wishes of the true speaker.

Reading it, I reminisced about a few of the thoughts inaccurately attributed to me over the years by seemingly well meaning parents, teachers, psychologists and other persons in positions of power. Remembered how they all got it wrong. The conclusions they drew. She’s shy, she’s rebellious, she doesn’t like people, she’s selfish, she’s crazy, she’s “warped.” Yeah, warped.

At least they didn’t write it down and sign my name to it.

Being told what I thought, the reasons I did the “odd” things I did, having words put in my mouth constantly took its toll. As a child, I did not have the resources I have today. I expressed my disagreement with the descriptions of me by crying, howling, and hitting myself. These were valid and clear expressions, but were not understood by the others. They were not considered to mean anything. My protests ignored, I came to believe that what adults said about me must be the truth. Shy and rebellious and selfish and warped became the ways I thought of myself. Became the ways I behaved. The consequences were serious and real.

At least they didn’t write it down and sign my name to it.

It took many years to erase the picture of me that had been created by others, the picture they felt they had a right to draw because I didn’t talk much, preferred solitude, and had all-consuming narrow interests. It took more years than it might have otherwise to learn who I really was. Now, as an autistic adult, I find I must constantly defend my right to speak on matters related to autism. Meanwhile, a person without direct experience of autism seems not even to question his right to sign another human being’s name to his own political agenda. After all, David is a child. His child. One who doesn’t speak much. A readymade puppet.

Why didn’t this dad just use his own voice to make his points? I guess he thought it made a more powerful statement this way. A few years from now, David may have an interest in talking about his experiences. I hope that he will not be silenced because someone read one too many fictionalized “first-person” accounts, explaining what autistic people really think.

7 comments:

  1. It is cruel to speak for other people who are unable to; I don't think the article should have been written from the autistic child's fake point of view.

    But I also feel this way about facilitated communication. The way this article was written is no different from FC: someone else is speaking for the autistic person and it may be the complete opposite of what they wish to say.

    If the autistic child is unable to communicate with language than no one else should speak in language for him or her; I think it is cruel.

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  2. Stephanie - I know FC abuse exists, but it's not *all* like that.

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  3. Well, I'd say for the majority, it is. And I've asked people to do simple, scientific tests to prove it is working and they always refuse, saying that "knowing" is enough.

    Sorry, I'm just a hardcore science person when it comes to FC.

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  4. This is not my blog obviously and I figure Bev is perfectly capable of doing any of her own moderation here that she deems necessary. But just as a general point, I have noticed that whenever FC comes up, it tends to dominate discussions in the same way that bringing up abortion debates or "Democrats Versus Republicans" does.

    Hence, I would just ask that if anyone responds to my comment here that I am making, they not turn it into an FC argument. What I want to respond to is the point of Bev's original post, which to me looked like a more general point about it being wrong to attribute authorship, motivation, personality, etc., to someone else. It doesn't matter how this is done, in my opinion -- what matters is that it gets done at all.

    And one of the main reasons I think it gets done is because it is not recognized widely enough that autistic and other people with neurological disabilities have subjective selfhood.

    Even severe cognitive disability doesn't mean a person is not an individual! Just because you don't KNOW what someone is actually thinking (and may never know) does not make it okay to assume you can just co-opt THEIR perspective.

    I try never to assume anything about anyone in that way, not even if they aren't human (i.e., cats). Unless I have a LOT of evidence pointing to something I just take the "I don't know" perspective. I know that sometimes someone has to act on behalf of someone whose wishes cannot be readily known (like someone with no language at all, a very young child, etc.) but this can and should be done with respect for the fact that you really don't know what they want, and with acknowledgment that you really are just going with your best guess.

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  5. AnneC,
    Great to see you here! Yes, absolutely.And this is just a part of the bigger picture, the insidious undertone suggesting that autistics and others with disabilities are not fully human.

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  6. SadderbutwisergirlJuly 14, 2009 at 10:12 AM

    I do not know how to describe that article. Sickening would be best, but I think that's an understatement. This father used his own son's name and the fact that he couldn't speak much to turn him into an object of pity and further his own goals for a "cure." When I was about 8 years old, I went through a phase of tantrums because of numerous things. I was sent to this speech class to do worksheets of idioms I already knew and be forced to make eye contact while being lectured on the "importance" of it. Then I would go back to class and be made fun of for it. I tried escaping from class because of this and the teachers and my parents said I had "behavioral problems" because for those things, among many other responses to other instances of being bullied. It still hurts even now when I am twice that age and am only two years away from attaining legal majority.

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