Finding Agreement
There is a listserv I've joined recently, about girls/women on the autistic spectrum, called Autism_in_Girls. It's got a mix of parents of autistic girls, autistic women and various other people.
Anyway, I started out commenting on what people said that triggered posts from me, just as usual. Some were about various features of autism, such as one person wanting to know about anxiety in autistic girls, but when some people posted about biomedical treatments for autism, I commented on that as well. I wasn't as careful as I sometimes am about phrasing my comments diplomatically, and this list has a number of people who support biomedical treatment of autism, so an argument broke out. When someone asked whether I'd come to this list in order to upset people, I felt terrified. It was like I was in a village hearing someone yell "we'll drive the witch out of town". I felt like I was about to be cast out.
So far in this story, it's just what I've had happen on many lists. I say what I think and feel, and everyone likes my unique contribution, then I say 'the unsayable' and people suddenly turn against me. Usually what happens next is that I fight for awhile, and then leave the group, feeling beaten down emotionally. But that's not what happened on this list.
I argued awhile, trying to clarify that I hadn't said any of them were bad parents and the various other things people had read into what I'd said, trying to explain what I really meant and why it was important, and then something really unusual happened. I connected with one of my fiercest opponents.
To summarize what happened, the other person (a mother of an autistic girl) said she'd learn much more from me telling my story than posting inflammatory comments. I replied with a reference to the definition of self-narrating zoo exhibit, saying I didn't want to be one. She replied to that by saying she didn't want me to be a self-narrating zoo exhibit - she wanted me to say what was meaningful and why, how my story shaped my view of autism, what made me say the things I said. She wanted to understand me, in short.
And in reply to that, I took a risk and gave her exactly what she'd asked for. I told my story (in two segments). For those of you who don't know, I was sexually abused by my cousins, attended a really bad school from K-4, attended a somewhat better school with a bullying problem from 5-6, was homeschooled from 7-9, read about neurodiversity and self-diagnosed as autistic at 14 or so, attended a high school for grade 10, was diagnosed autistic at 15, and have been homeschooled for grades 11-12. My parents never thought there was anything 'wrong' with me and refused to have me diagnosed with anything other than PTSD, not because they didn't realize I was different, but because they saw no problem with how I was. This is a brief summary, I told my story in much more detail on this list.
And the risk was worth it. I felt very exposed, saying so much about myself to people who were hostile to me, but after that they weren't hostile any more. They still don't agree with me on many things, but I think they're coming to understand my viewpoint. We've made peace, though I don't know how to go on from here to regular conversation again. I'm still trying to figure out what happened. I'd love to know how this can happen in other settings, but I don't understand it, or how much of it was under my control.
On thinking about it, though, I have some theories about things that may have made this different from other similar encounters.
Firstly, I wasn't the only one. There are several autistic women on this list, one of whom was quite vocal in supporting me (and one who was confused by much of it and kept asking people to clarify, which we did as much as possible). I've read in social psychology textbooks that one person expressing a minority viewpoint in a group has little impact on other group members, but if even one other person expresses agreement, the minority is much more powerful. So that might be part of it - though I've seen times in which multiple autistic neurodiversity advocates argued with a majority of people looking to cure autism and eventually each of them were successfully driven away, so this can't be all that made a difference.
Secondly, a major person on the other side of the argument, though she attacked me personally early on in the argument, used quite a lot of logical discussion and trying to clarify her understanding of my viewpoint as well. Not only did this make it much easier for her and I to come to an agreement in itself, but it also encouraged me to argue better myself. I admit that I did some personal attacks, though mainly towards people group members supported rather than group members themselves (eg, I said 'reputable DAN doctor' was an oxymoron), but in reaction to her model, I stopped doing that.
Lastly, I think I was different. Some of this took place during the lead-up to the ARM conference, when I was getting a really heavy dose of anti-autism stuff while simultaneously having a lot of personal support, and the bulk of it took place right afterwards, when I'd had a big shift in my viewpoint of parents of autistics as a result of my mother and the numerous activist mothers I met at the conference, as well as a shift in understanding myself and my own story (which I should probably blog about soon). That conference made me much more confident as well, and therefore less prone to defensiveness in reaction to that argument. I was able to confidently say 'no' to a request for proof of my diagnosis, and rather than feeling like my story was too atypical to teach anyone and would just show I had no right to talk about autism, I felt that my story illustrated something useful and significant.
Anyway, I started out commenting on what people said that triggered posts from me, just as usual. Some were about various features of autism, such as one person wanting to know about anxiety in autistic girls, but when some people posted about biomedical treatments for autism, I commented on that as well. I wasn't as careful as I sometimes am about phrasing my comments diplomatically, and this list has a number of people who support biomedical treatment of autism, so an argument broke out. When someone asked whether I'd come to this list in order to upset people, I felt terrified. It was like I was in a village hearing someone yell "we'll drive the witch out of town". I felt like I was about to be cast out.
So far in this story, it's just what I've had happen on many lists. I say what I think and feel, and everyone likes my unique contribution, then I say 'the unsayable' and people suddenly turn against me. Usually what happens next is that I fight for awhile, and then leave the group, feeling beaten down emotionally. But that's not what happened on this list.
I argued awhile, trying to clarify that I hadn't said any of them were bad parents and the various other things people had read into what I'd said, trying to explain what I really meant and why it was important, and then something really unusual happened. I connected with one of my fiercest opponents.
To summarize what happened, the other person (a mother of an autistic girl) said she'd learn much more from me telling my story than posting inflammatory comments. I replied with a reference to the definition of self-narrating zoo exhibit, saying I didn't want to be one. She replied to that by saying she didn't want me to be a self-narrating zoo exhibit - she wanted me to say what was meaningful and why, how my story shaped my view of autism, what made me say the things I said. She wanted to understand me, in short.
And in reply to that, I took a risk and gave her exactly what she'd asked for. I told my story (in two segments). For those of you who don't know, I was sexually abused by my cousins, attended a really bad school from K-4, attended a somewhat better school with a bullying problem from 5-6, was homeschooled from 7-9, read about neurodiversity and self-diagnosed as autistic at 14 or so, attended a high school for grade 10, was diagnosed autistic at 15, and have been homeschooled for grades 11-12. My parents never thought there was anything 'wrong' with me and refused to have me diagnosed with anything other than PTSD, not because they didn't realize I was different, but because they saw no problem with how I was. This is a brief summary, I told my story in much more detail on this list.
And the risk was worth it. I felt very exposed, saying so much about myself to people who were hostile to me, but after that they weren't hostile any more. They still don't agree with me on many things, but I think they're coming to understand my viewpoint. We've made peace, though I don't know how to go on from here to regular conversation again. I'm still trying to figure out what happened. I'd love to know how this can happen in other settings, but I don't understand it, or how much of it was under my control.
On thinking about it, though, I have some theories about things that may have made this different from other similar encounters.
Firstly, I wasn't the only one. There are several autistic women on this list, one of whom was quite vocal in supporting me (and one who was confused by much of it and kept asking people to clarify, which we did as much as possible). I've read in social psychology textbooks that one person expressing a minority viewpoint in a group has little impact on other group members, but if even one other person expresses agreement, the minority is much more powerful. So that might be part of it - though I've seen times in which multiple autistic neurodiversity advocates argued with a majority of people looking to cure autism and eventually each of them were successfully driven away, so this can't be all that made a difference.
Secondly, a major person on the other side of the argument, though she attacked me personally early on in the argument, used quite a lot of logical discussion and trying to clarify her understanding of my viewpoint as well. Not only did this make it much easier for her and I to come to an agreement in itself, but it also encouraged me to argue better myself. I admit that I did some personal attacks, though mainly towards people group members supported rather than group members themselves (eg, I said 'reputable DAN doctor' was an oxymoron), but in reaction to her model, I stopped doing that.
Lastly, I think I was different. Some of this took place during the lead-up to the ARM conference, when I was getting a really heavy dose of anti-autism stuff while simultaneously having a lot of personal support, and the bulk of it took place right afterwards, when I'd had a big shift in my viewpoint of parents of autistics as a result of my mother and the numerous activist mothers I met at the conference, as well as a shift in understanding myself and my own story (which I should probably blog about soon). That conference made me much more confident as well, and therefore less prone to defensiveness in reaction to that argument. I was able to confidently say 'no' to a request for proof of my diagnosis, and rather than feeling like my story was too atypical to teach anyone and would just show I had no right to talk about autism, I felt that my story illustrated something useful and significant.
Labels: activism, autism, cure, listservs, normal parents, perspectives
posted by Ettina at 1:04 PM
4 Comments:
Angering people on lists (by simply stating my opinions) is something I used to do a lot. I've since learned to mostly keep my mouth shut. That's awesome that it worked out better this time. I'd love to know the name of the list as well - sound like something I'd enjoy.
These few norwegian autism communities (where I live) are either very-much-into biomed or talk to you as a child... I've pissed of people at both places and rightfully so, I believe.
I'd rather go for creating a new community. ;-p
Apologies for posting off topic here -- I'm mostly leaving this comment because I wasn't able to find an email address to contact you directly.
I wanted to get in contact with you to see if you might be willing to copy/paste the following item from my blog into yours? I'm trying to encourage more people with disabilities, our loved ones, colleagues, and other allies to write emails to Obama to increase the visibility of disability issues among his staff. Letters are wanted not only from across the United States but also from around the world. The following Call to Action explains more about how and why:
http://wecando.wordpress.com/2008/11/07/disabilities-email-obama/
What an amazing article !
I'd like to add that saying the "unsaybale" can also really help people who think the same thing but believe they are alone.
When I was about 10-11 years old, I felt really awkward when I heard people talking about curing neurodivergences, I tought that it would be a threat to diversity. And that made me feel really, really guilty, I believed I was an awful, unethical and egoistic person who wasn't able to sympathize with the sufferings of disabled people. And a few years later, I discovered Jim Sinclair, then Neurodiversity advocacy and anti-cures movement. And my life changed (positively). I don't feel ashamed anymore about saying what I think now.
That's why I really enjoyed this post, Ettina, because it prooves that talking about marginal and unusual view points isn't a wrong thing (contrarily to what a lot of people seem to think),
Wrongshoes ==> I am conscious that it can be really annoying to anger people by just « stating your opinions » but I also think that people shouldn't shut up just because they certainly won’t find agreement, because by expressing yourself you can also really help someone : you never know. So, please, don’t shut up, in the name of all the people who are anti-cures, and are afraid to say it because they think they are the only ones. Please, don’t ! =)
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