Thursday, October 30, 2008

Why Jenny matters

The first day of class. We are doing the usual first day introduction thing, what is your name, where did you get your bachelor’s degree…what are your areas of interest. Mine haven’t changed much since I started back to school a few years ago. Autism. Needs of adults on the spectrum, employment, higher education, services for general living type problems. Recognition of basic human rights. I talk for a minute or so, and everyone else does too, and then we are on to the lesson, three hours long.

It’s tiring to sit for that long, and when it’s over I’m out of my seat and out the door, moving fast, down the stairs, down the path to the parking lot. Someone is behind me, catching up as I finally make it to my van. “Autism…” she wants to talk. I’ve had enough of these conversations that I know not to expect any questions about the particular areas of interest I mentioned. The questions I get are nearly always about supporting children. I don’t pretend to know a lot about raising children, I don’t have any. I was a child once, though, one who had a lot to say, and not very much ability to say any of it. I know what that feels like and the damage that can be done with a roll of the eyes, an exasperated sigh.

I get these thoughts lined up in my mind, like a row of similar objects, ready to pull the one I need, depending on the question. Usually, the question will be about a behavior issue or an educational concern. I know about some resources nearby; I know the names of some professionals who respect autistic ways of being. I hope I will be some help to this person. She has finished the question. She’s waiting while my mind catches up. Inside my head the possible questions and answers fall like dominoes. “Do you think it’s the vaccines?” Now I hear it. Look at the pavement. No. I say it slow, more slowly than I mean to, raise my head slowly to meet her eyes. A jumble of words greets me. It’s hard to know…so many children…Jenny McCarthy…

I counter with a few of my own. Polio. Measles. Death. Preventable. Yes, this matters, it matters a lot. It’s not my area of expertise, and I prefer to pass these questions along to people who explain these things far better than I do. But when the question keeps coming to me, what can I do? No mention is ever made of the reason for her interest. A person in her life? Autistic? I still don’t know. Maybe I should stop saying I have an interest in autism. Somebody always seems to think it means causes, treatments, cures, or numbers. No, I wanted to tell her. That's not it. I meant autistic people.

13 comments:

  1. "Somebody always seems to think it means causes, treatments, cures, or numbers. No, I wanted to tell her. That's not it. I meant autistic people."

    This REALLY pinpoints the frustration I've experienced as an autistic advocate over the last couple years. Given my characteristic abrupt style (which is usually the given when my energy for speech is low), I wonder how people would react if I said "No - people."

    ReplyDelete
  2. Precisely why J*nnie, et al, are a problem. They have managed to divert attention away from people who need help RIGHT NOW and those who live in the past. Whenever I am personally confronted, I always divert the subject to the here and now, and discuss availability of programs and assistance.

    ReplyDelete
  3. She's managed via her high profile partner, to create a lot of attention for her half baked notions. She is seen by many people to represent the public discourse on autism issues. Yes she is important, just to get people to know the real story, that it's people who matter, and how they are able to live.

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  4. I feel so strange when people think my interest in autism means I want to talk about cause or cure. I get a feeling in my chest and my stomach and I want to cry out, something rude.

    Last night I was with some people who saw the CBC's short news item called Positively Autistic - featuring Estee and Adam Wolfond, Ari Ne'eman, Wendy Dawson and Amanda Baggs. People were very happy they saw this story and happy to know that some are advocating for acceptance of autistic people.
    Thanks for writing about your quandary, Bev.
    Martha Leary

    ReplyDelete
  5. "I get these thoughts lined up in my mind, like a row of similar objects, ready to pull the one I need, depending on the question."

    It's like you read my mind. I do that ALL the time. Of course, it doesn't help that people ask the same questions over and over again.

    ReplyDelete
  6. "Maybe I should stop saying I have an interest in autism. Somebody always seems to think it means causes, treatments, cures, or numbers. No, I wanted to tell her. That's not it. I meant autistic people."

    My response:

    http://tinyurl.com/5kv7ff

    ReplyDelete
  7. I understand this. I've thought a lot about this post. The issues that are closest to our hearts can compel us to talk when we are not ready or tired or in need of leaving. We talk before we even know anything about our audience. We stand chained to the obligation of trying. We can become compelled to try and reach for words in the dark because we want the light to come on for the listen even when (as you pointed out) we don't know from whence the question really sprung. For me... for you... and others who relate, I think we might consider first saying, "Could you please share with me why you are interested?" Then we would know more about our audience and so we could husband our energies accordingly.

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  8. Individuals are always more important than big idea.

    Always.

    It is ok for you to be out about Autism and be ok out about vaccine causation NOT being a controversy. Science is conclusive.

    Just because people believe it does not make it true. Consensus is not science-belief is not truth.

    DNA not vaccines.

    ~Sarah

    ReplyDelete
  9. Random Quack: Cookies cause nearsightedness.

    Science: Where the heck did you get that idea?

    Random Quack: My Billy could see just fine until he ate those cookies. But right after he ate those cookies, we took him to get his eyes checked -- and he suddenly needed glasses. I know my kid. Cookies cause nearsightedness.

    Science: Cookies do not cause nearsightedness.

    Random Quack: We can't be sure. We must perform many studies until we prove cookies cause nearsightedness.

    Science: Cookies do not cause nearsightedness.

    Parents of nearsighted kids: Yes, yes! Cookies cause nearsightedness! Our kids weren't nearsighted until they ate those cookies! We must find a cure for nearsightedness!

    Science: Cookies do not cause nearsightedness.

    Random Quacks: We must perform dangerous, unproven, traumatic procedures on nearsighted children until we prove cookies cause nearsightedness.

    Parents: We will pay you whatever it takes.

    Science: Cookies do not cause nearsightedness.

    Quacks, Parents: We must find a cure for nearsightedness!

    Nearsighted Adults: My parents were nearsighted. I've always been nearsighted. I don't even like cookies. I don't mind being nearsighted. Just give me back my glasses, please.

    Parents, Quacks: The tragedy of nearsighted children is they grow up to be nearsighted adults. We must find a cure for nearsightedness!

    Nearsighted Adults: Hello? My glasses . . . please?

    Science: Cookies do not cause nearsightedness.

    Quacks, Parents: You should perform more studies to prove that they do.

    Science: Cookies do not cause nearsightedness.

    Quacks: I myself have performed a study that proves cookies cause nearsightedness.

    Science: Really? Can I see it?

    Quacks: Um . . . no. It's, uh . . . patented.

    Jenny McCarthy: Yak yak blah blah cookies belch fart yak blah nearsightedness!

    Public: Yay Jenny! No nearsightedness! No cookies!!

    Science: Cookies do not cause nearsightedness.

    Public: Yay Jenny! Cookiesnearsightedness!

    Parent of Nearsighted Kid: Google: "nearsightedness"

    Google: Cookies = Nearsightedness


    (Quacks: I have just the thing for your kid . . .)

    ReplyDelete
  10. Have you ever seen one of those "join the dark side - we have cookies" bumper stickers?
    What more proof do you need?

    ReplyDelete
  11. Great! Makes me think of this:
    http://www.circleversussquare.com/?ID=56

    Did someone take my glasses?

    ReplyDelete
  12. Hey Bev, guess what? autism Speaks, after all these years, finally, hired an autistic board member. Finally!

    They still have a long ways to go and many conflicts of interest to overcome.

    ReplyDelete

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