Comments on: Exploiting our stories. Destroying our sense of privacy.

By: NPRBreeder

NPRBreeder — Tue, 01 Jul 2008 18:32:20 +0000

Sorry to revive a “dead” conversation. Etinna’s comment helps. I believe many of us parents are just looking for a way to help our kids. Not help them be more “NT” or help them be “normal” but just to help them be happy and strong. It IS a lot of pressure. But it’s the future generation and the future of the autism pride movement, specifically, at stake, when we talk about our children.

By: Ettina

Ettina — Sun, 30 Apr 2006 22:15:37 +0000

Oh, and I forgot to mention – I have no problem with telling my story. The only problem is concern about if it will be used to support things I don’t support, and my solution is to state clearly why I don’t support those things. I’m writing an autobiography. (And a disability rights book that isn’t an autobiography.)
I don’t understand it myself, but I know some people don’t want to tell their life story to everyone. But what’s wrong with asking something like “Would you be willing to tell me X?” It’s possible to say no. Not taking no for an answer is a problem, but I wouldn’t like it if someone was wondering something about my that I’m willing to tell them about but they never ask. I wouldn’t answer some questions. But for example if there’s a parent (and many reason this way) is thinking “you’re older than my child, maybe you can tell me things about your experience so I can better parent my child” for example if their child is heading into middle school and they’d like to know my experience of middle school, I’m glad to tell them, with the hope that child will be spared some of the awful things I experienced.

By: Ettina

Ettina — Sun, 30 Apr 2006 22:04:54 +0000

“If you didn’t want to talk about it openly, you were told that this was “not healthy” and showed a “lack of trust” in other community members”
But in fact trust issues can result in telling complete strangers your life story. They key with trauma-related stuff (and trust issues are trauma-related) is *extremes*. Typically this shows up one of three ways with each thing. Being at one extreme, the other extreme, or bouncing between the two. For example in terms of memory, there’s inability to stop thinking about it, not even knowing it happened, or the more common scenario that so few people understand, where you remember some things well and other things not. For example, I have body memories and occasionally vivid but fragmented visual memories but otherwise have little memory of being sexually abused. (And if any false memory syndrome types read this – one of my abusers confessed. It is possible for memories of corroborated abuse to be repressed.)

By: Julian^Amorpha

Julian^Amorpha — Fri, 28 Apr 2006 01:10:33 +0000

As it stands, I’m much more interested right now in the idea of writing a novel than I am in writing my autobiography. If I write a novel, in all likelihood, it will not be about either multiplicity or autism, nor will it be semi-autobiographical. I’m sure this would be received with confusion by people who think that belonging to any sort of ‘minority’ group means you are only interested in, or only capable of, writing about people who are exactly like you.

Which is all the more of a compelling reason not to go around publicizing my life history, because if I did, anything else I wrote would be bound to be ‘analyzed’ in light of that. The fact that I was writing it at all might be treated as remarkable and miraculous, as has happened to plenty of other multiples and autistics who wrote their own books– “how amazing it is that someone with this bizarre mental condition could get it together enough to write a book.” They might treat the fact of my writing as assuming prominence over anything I actually had to say, and my work would not be judged on its own merits as I would prefer it to be.

By: Alison Cummins

Alison Cummins — Thu, 27 Apr 2006 21:06:02 +0000

My own feeling is that when I am a representative of a dominant group *in a setting where I am in the majority* I am very, very careful about what I say. When I am in a minority I feel much freer to take risks and put my foot in my mouth and be an oaf in the hope of learning something, because I feel as though I am less threatening when the non-dominant group outnumbers me significantly. I feel as though the scales are a bit more balanced.

But I’ve come to recognise that this is not sufficient: that bringing my oafishness to somebody else’s table may have the effect of making them feel hounded, unsafe no matter where they go.

This poses a bit of a quandrary, but I have found that demonstrating an ability to listen well and learn quickly gets me much forgiveness. (For which I am extremely grateful.) And to do that I need to really care about the people I’m listening to and value their point of view. Which is the whole point, isn’t it?

By: mom-nos

mom-nos — Thu, 27 Apr 2006 20:35:42 +0000

As a non-autistic parent of an autistic child, I struggle with this on blogs written by autistic people – what to say, how to say it, how to make sure I’m not offensive. And often – most of the time, actually – I get so paralyzed by it that I end up not commenting on things I’d like to comment on.

In some ways I feel like the people who just plow in and say SOMETHING are handling it better than I am. When they say something offensive, they just make themselves look like oafs. But by being so afraid of saying the WRONG thing that I say nothing at all, I run the risk of having my silence translate as “your thoughts, your ideas, and your words don’t matter,” or worse, “you do not exist to me.”

I have similar feelings to what Zilari wrote above, both in my own posts and when I make comments: “Nevertheless, every time I post something I feel vulnerable. I post, go to sleep, and wake up wondering, “Should I have written that? How is it going to be used?” But here I go clicking the “submit” button again.

By: Justthisguy

Justthisguy — Thu, 27 Apr 2006 18:45:52 +0000

I like what you write, and how you write. I have tried to read as much of your writing as I can find on the Web, not because I want to know all about you, but because I want to know more about the subjects you write about. (Of course, you *are* one of the subjects you write about. Snork!)

By: Jannalou

Jannalou — Thu, 27 Apr 2006 18:27:59 +0000

I think there is a place for autobiographies in the world of autism literature, but I do agree that “political” books, or “theory” would be more useful at this point.

Educate the public, not with your life story, but with theory and fact about what autism rights is about.

By: rocobley

rocobley — Thu, 27 Apr 2006 16:42:43 +0000

Political books, frankly, would be much more useful than autobiographies I think. What the movement badly needs is some *theory*.

By: ballastexistenz

ballastexistenz — Thu, 27 Apr 2006 12:57:19 +0000

Oh, believe me, I've got plans for several, not that they will necessarily ever come out (I don't have that kind of focus). But none of them have anything to do with my life story, except perhaps tangentially. Most people are telling me I should write my autobiography.