Where do we draw the lines? Wherever we can find the slightest reason to do so.
- Parents draw lines when they think their voices don't matter.
- Autism parents draw lines between themselves and other parents based on parental philosophies more than even garden-variety parents in San Francisco. And that's saying something.
- Autistics draw lines because their lives have been one slammed door, one sneer, one derisive laugh, one bullying incident, one misinterpreted communication after another.
- There are lines around and through different diagnoses, enough to slice a community to ribbons if the divisions are drawn sharp enough.
- There's the disability pissing contest--mine's worse than yours. We suffer more. Your suffering cannot compare. My suffering kicks your suffering's ass.
- You think that doesn't cause autism? You are completely irrational and a minion of Big Pharma.
- Are you a positive person with a positive outlook? Get to that side please. This side of the aisle is reserved only for people who are negative--because negativity, you see, is the only honest interpretation of autism and disability.
- You can talk? You're consigned to "not as important." Only parents of nonverbal children on this side of the line.
- Wait, did you say something? You're not autistic. Sorry. People who can speak aren't really autistic. You can't speak for my nonverbal child.
- Oh, you can type? Articulate yourself well? Sorry, you don't count. You're clearly fully functioning and have no voice for people who are truly autistic.
- Your child's diet is not GFCF? Obviously, you've failed as a parent. Please join the other failures over there.
- You vaccinate? Dumbass.
- Did you just say that it's hard for you? Oh, quit whining.
- You have Asperger's? Why are you even in this tent? People like you? You're not autistic. You're just "quirky," possibly even "cutesie." Also, when you reach adulthood, you don't exist.
- Speaking of non-existent, I'm sorry, but you can't be a middle-aged autistic person because, well, autistic people didn't exist when you were born.
- Did you write something positive about your autistic child? Clearly, you are lying and/or willfully delusional. Please, take your place elsewhere. You don't belong with the rest of us.
- You're grieving the loss of hopes you had? Sorry, but that's not allowed.
- You have a job, a significant other, an education? You can't be autistic. Autistic people can't do these things.
- Oh, you can feel for other people? You can't possibly have autism.
- You say you have a disability, but you're happy? Then clearly, you are not disabled.
- I'm sorry, I didn't quite hear that. What? You find positives in your autism? That's simply impossible. There is nothing about autism that is positive.
- Did you just make a joke? You must have been joking when you said you were autistic. Autistic people don't have a sense of humor.
- Oh, you had a bad day because of autism, yours or your child's? Nope. Only the good stuff here.
- Oh, I'm sorry...those autistic people can't talk to you because they have nothing to say that might someday open a door for your autistic child.
- You don't worry that autistic people might read what you say and perhaps find it offensive? Oh...you say it's because truly autistic people can't read, much less feel offense?
- That woman over there thinks that behavior is communication. She's obviously deluded and doesn't realize that her child is simply toxic and that's the autism talking, not the person.
- If you don't think autism stole your child, you are living in a land of rainbows and unicorns. Slap, slap. Wake up. You're an idiot.
- Your child is mainstreamed? Not autism.
- If your experience with autism isn't my experience with autism, then you're not on my side.
- If your experience with autism isn't my experience with autism, you cannot have my trust, and I will judge you.
In other words, in the autism community, if you haven't drawn a line, positioned yourself on one side or the other of a million tiny divisions, staked your claim and marked your territory, well...clearly, you're not paying attention.
Do I have lines? Yes, I do. Here are my lines:
- Respect autistic people and listen to what they have to say. Period.
- Make no assumptions about capacity, but always assume potential.
- Do not second-guess the personal experiences of others.
- Do not second-guess someone's diagnosis or self identification of autism.
- Do not write things about my family members--including my children--that compromise their privacy or personhood.
- Do not expect anyone else to feel as I do about their experiences or mine.
- Remember that everyone is fighting a personal battle.
- Remember that disability does not mean "no ability" and that different does not mean "less."
Those are my lines. If I find that someone has willfully or accidentally crossed them, I will have something to say about it. I always have.
12 comments:
Yes you certainly do draw your own lines.
Here's my take on this, and you have made more excellent examples to illustrate my point than I could have in terms of divisions. Yep there are lines, plenty of them. And if were pushed to define where some of mine are as you have above I could set out some clear examples of where I sit on one side or the other. Vaccines being an easy choice.
But there are spaces more ambiguous for me. Those being of a more philosophical nature, such as the notion of disability. Some will maintain it's a social construct primarily while others will argue it's a biological dysfunction, and then there's a position that can see both points. Why should I need to choose a side?
I say this as one of very many people new to the autism 'community'. Still working my way through ideas, concepts, research and arguments, and applying that to my own and my autistic son's lived experience.
Choosing one side over another is tempting for me as it connects with my own tendency to think in black and white. I work hard to stay open to others stories and positions. It's something that leads me to swing in one direction and then the other. Not a comfortable space, but one I feel has integrity because I disallow myself to be locked into ideas that stunt potential for understanding and growth of knowledge.
Perhaps a few years from now I will have the capacity to lay down those lines clearly. Without ambiguity state a position on all those complex areas you mention. But I wonder if at that point it means I stopped listening? To be so definitive in any one position seems to me to be anti intellectual. If we are continually striving to understand something as complicated as autism then how do we hitch our wagon to one perspective and then stop? How does that allow for development of understanding? Openness to new ideas for consideration?
As a caveat I will say I had a few wines before responding (while juggling feeding time at the zoo) and perhaps I could have articulated my position more thoughtfully than I have. Thing is, I need to respond now because between this moment in time and the things I need to get done in the next few hours this opportunity to respond may be lost, and I really wanted to honour the points raised in the post, because they have given me much to ponder.
Thanks for the food for thought.
In your interactions with me, you have been one of the people you are complaining about here, pretty much without exception. I think if you actually believed most of this your behavior would be markedly different. You would not have ridiculed me for objecting to your hostility to the concept of listening to autistic people. You would not have told Robert Rummel-Hudson that it was fine for him to continue to display the sort of contempt for autistic people you criticize here. In defending your actions, you would not have pretended our lengthy email exchange had simply not happened, and that the things I asked you about were utterly new concepts that had never occurred to you.
Maybe this is progress? Or maybe it's just hypocrisy.
you go girl!
In the past 8 or so years, I've been on different sides of some of the lines in that longer list. It's taken me awhile to develop that shorter, core list of attitudes and decisions. I imagine that anyone here who's honest with themselves would say the same. It's probably difficult to encounter any controversy in autism, any attitude, any emotion, without assigning it to some "side" or another.
And how many sides have you been on in the last three months? The last week? I do not understand at all your criticism of "Lost and Tired" when you continually publish-- with no caveat at all from yourself-- FarmWifeTwo's comments, which make similar points in much more offensive ways. You give tacit approval to her bigotry all the time-- in what way is Lost and Tired different? Wouldn't it be more productive to clean up your own blog before attacking other people?
Outstanding post, Emily. You've always been a strong advocate for hearing the voices of non-autistic parents and autistic people -- especially those who refuse to buy into the false binary choices (tragedy or gift? misery or joy? better or worse?) about autism and disability that our culture dishes up. I think that the lines you adhere to are not about simply adding to the division, but about opening a conversation that moves beyond those kinds of binaries into a much more complex discussion of the issues. Brava! I am honored to be in this community with you.
"especially those who refuse to buy into the false binary choices (tragedy or gift? misery or joy? better or worse?) about autism and disability that our culture dishes up."
THIS that Rachel said. There are sides I'll take, but not in the case of false binaries.
Some very good points here.
The lines you have suggested are all great ideals but as humans, we're fallible.
If we speak/write/post when we're tired or during stressful times, our words often cross lines. I've seen this on many blogs.
I like to think that gentle teaching can be more effective than an all out attack on someone for a slip up.
In correcting other people's "transgressions" we need to be gracious and accept that people don't always mean what they say.
I really appreciate it when someone corrects me gently and gives me a chance to understand how I've crossed a line.
You're trying that on me now, I see. I do what I see fit, but thanks.
Hey Emily,
I just came upon your blog in the search for blogs on Aspergers and Autism. I really enjoyed this post. Your lines that you draw were quite inspiring and I thank you. Cheers :)
You forgot one.
You have all those additional medical problems?You can't be autistic.
Post a Comment