Saturday, June 19, 2010

We worry about what a child will become tomorrow, yet we forget that (s)he is someone today. ~Stacia Tauscher

A big reason behind my entering the world of blogging was because I felt that the internet was the ideal way to get across a message that had been systematically ignored, mocked, or silenced out of the public debate on autism: That human beings deserve a basic amount of dignity, respect, bodily and intellectual autonomy, and independence, and that people with autism are human beings.
The public discourse about autism rarely focuses on this simple, frequently denied idea. We're almost never included in the discussion, except on occasions when we are paraded out in dunce caps to show off our pitiful existence in order to garner sympathy for our parents and caretakers. But what really gets me is that the most often provided targets of this pity parade are children. O, won't someone think of the children?
In my experience, the anti-vaccine camp is the most guilty of all the parties in performing this stunt. A particular example that has come to my attention recently involves a fellow referring to his child with autism as "damaged", in a Canadian newspaper. Owing to some interesting circumstances, I'm choosing not to name the paper nor the letter writer, for the safety of myself and my loved ones. But when I read his letter to the editor, I was instantly reminded of other examples of this. Jenny McCarthy's son, before his autism diagnosis when he was a "Crystal child", during his diagnosis and alleged "cure", and after it was revealed he never had autism at all. The children on Oprah Winfrey, squirming uncomfortably as they were held up by their mothers as an example of the "damage" vaccines had done to them, and countless other examples leap to mind.
It's not just the fact that they are humiliating these children in the public sphere that is problematic, or insulting them in front of all, with words like "empty", "husk", "broken", "sickened", "damaged", "stolen", "near dead" and "ill" being liberally applied. The very fact that children, particularly when it involves nonverbal children, are being used as pawns to advance the political/social agendas of adults is downright sickening. Children are not the property of their parents, to be displayed at their whim, or used as a bargaining chip in an ideological debate. They are individuals, and yet, their freedom and their power to decide their destiny is often marginalized due to the wishes of adults who hold power over them, whether it be parents, teachers, or caretakers. Especially concerning disabled children.
The reason that I am here today, writing this, is because my mother and father didn't use my neurological differences as a battering ram to force their viewpoints onto other people. I was not a trump card, or any other sort of metaphor or tool to them. I was their daughter, and their priorities to me were to protect, nurture, and respect my growth. Autistic children grow up to be autistic adults. But we cannot be happy, whole grown ups with autism if we grow up under the shadow of people who consider us to be broken, diseased, or political bargaining chips.


  1. Thank you for this. This entry is a great reminder to look at people as just that, people, not pawns. The idea of children as bargaining chips rings very true for me; I'm often suprised at how little of a voice children are given in general. Your writing helped me see how much more so this right to a voice of their own autistic and non-neurotypical children have taken away from them, in many cases. I'm glad your parents helped you grow and learn the way they did.

  2. The autism advocacy groups have often horrified me. One of them - I think Autism Speaks - was doing a fundraiser with a store I frequent, where they ask people to donate as they're making their purchases. I was so irritated that I said I would never donate to THEM in such a tone that the checker asked me why. I explained the way they treat people who have autism, and the fact that they don't seem to want to listen to people who live with autism about what would improve their lives, and the way they completely ignore and silence adults with autism.

    I took heart that once she heard what they were doing, she was appalled too! Unfortunately, they were required to keep asking customers, so she wasn't allowed to stop. Frankly, if it was me, I'd've told my boss what those people get up to and seen if they'd let me stop. I'm not sure what I would have done if they said no, 'cause I can sure understand needing to make a living.


  3. Lorrible- Thank you. I'm glad to have you as a reader.

    Kali- Would that store happen to be Toys R Us? They, along with Lindt Chocolate, are the biggest mainstream supporters of Autism Speaks that I've been made aware of, and I've sent letters to CEOs of both companies asking for them to reconsider their support. I never got any reply.
    As someone who works in retail, I sympathize with that checkout clerk. I am in a similar morally vulnerable situation, being someone who works for a company that designs and sells an e-reader that is inaccessible to people who are visually impaired or blind. I want to quit, and I have the privilege of doing so since I am in university and this is a temporary job for me. She is correct, you have to keep asking about these special promos, you get in trouble with your manager if you don't do it.

  4. It's a craft store local to my area, so I prefer not to name it as it would cut away a bit at my anonymity.

    I definitely sympathize with her position, being stuck asking people to support a charity she now knows really stinks. I'm a bit of a hothead, which is why I'd probably have the inadvisable argument with my boss.


  5. Such an interesting discussion --and so poignant. I don't know anyone who is working in retail (I teach reading / ESE) but I've given plenty of times at the register to causes I feel are important. I never considered the perspective of the person who is forced to ask for these donations. Yuck. Donations at the register are out for me.

    Corporate types see these drives as a way to show they care -- without costing them a dime. I hate to be the cynical one -- but with the charitable concerns flowing down from above, complaining to a manager might be fruitless.

    As a NT mom of a spectrum kid, cure-mania has me in a constant state of readiness as soon as someone mentions the "A" word. A good educator friend recommends the Jenny McCarthy book or asks me what I feed my kid? Repeated practice has me explaining slowing and calmly why those are such dangerous foolishness. Inside, though, I'm screaming "I can't believe you are so fucking ignorant!" If you aren't such a good friend, or if it is a bad day, the words, "fucking ignorant" may just come out in my well-used explanation.