Divisions

Published June 23, 2009 @ 11:43AM PT

There may be some general ways in which the motives of the professional, parent, and self-advocacy community line up.

I had originally started that last sentence as "there are some general ways," but as I tried to finish the sentence with a few examples, I wrote and deleted, wrote and deleted, wrote and deleted until I realized that I'm not entirely sure there are any at all. There are momentary overlaps, some parents share the motivations of some professionals on some things, some professionals share the motivations of some self-advocates on some things, and so on. Nothing global. I'm reminded vividly of the paper on professionals, parents, and self-advocates that broke down some of the core reasons for why the motivations of each group are so often divided or even at odds.

That's not where it ends either. Within each group there are also conflicting motives--some professionals want different things for their clients than other professionals. Some parents want different things for their children than other parents. And some self-advocates want different things for themselves than other self-advocates.

I'm thinking about this a lot today. Partly because I think about it always, knowing there is nothing I can post here that won't enrage someone, no matter how innocuous seeming. But mostly because later this week I'll be attending and presenting at the Oregon Disability Megaconference which attempts to cater equally to an audience of professionals, parents, and self-advocates.

This is the second year of the Megaconference. I missed the first year because I was at the AAIDD conference, presenting on something more science than advocacy. So I'm not sure entirely what to expect. I do know that the conference format--two or three sessions per day with long breaks in between--is like 500,000,000 times more do-able for me than the typical breakneck schedule (speaking of more accommodating conferences). I also do know that there are a number of presentations that are explicitly for a self-advocate audience, and which are being given by (and for) self-advocates and not professionals or parents. Which bodes well.

What I don't know however is how that divide will play out. How many of those autism or child-related presentations would make me enraged? Or pleased? Is the presentation on "Understanding Guardianship" going to be one that addresses the issues that are important to self-advocates, or will it be highlighting those things we most adamantly oppose? Is it even possible to create an event that is for all three audiences without falling into that divide?

No matter how much each group might educate the other, come to understand the point of view of the other, or even work on a daily basis with the other, sometimes I wonder if there might not be some good reasons for that divide. Maybe sometimes the divide should be simply respected rather than attempted to be bridged.

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Comments (5)

I'm currently reading a really great book about the divide and commonalities between these three autism communities. It's called " The Theory of Mind and the Triad of Perspectives "by Olga Bogdashina.

She's a professional and a parent, but the way she writes you would swear she's on the spectrum. She is one of the only authors I've found who actively combines real science with large quotes from the Autistic perspective.

on Amazon:

http://www.amazon.com/Theory-Perspective-Autism-Asperger-Syndrome/dp/1843103613/ref=sr_1_2?ie=UTF8&s=books&qid=1245788590&sr=8-2

Posted by Katie miller on 06/23/2009 @ 01:26PM PT
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"There may be some general ways in which the motives of the professional, parent, and self-advocacy community line up."

Absolutely, yes.

I am the father of a 9-year-old with LF autism; I am a teacher of children with autism ranging from the most profound to High Functioning; I am founder and adminsitrator of a UK-based support group for 2400 parents & carers of children with autism.

The divide is a false divide, perpetuated only because people on either side of the divide relish the division: the professional patronises the parent for not being able to maintain the high standards professionalism demands; the parent derides the professional for not comprehending the experience of relentless care; the advocate fools themself into believing that their whim encapsulates the zeitgeist.

Communicate. Engage. Get face to face with everyone involved in your child's care. If you don't, you're as much the problem as anyone else. And this comment goes for professionals just as much as it does for parents & advocates.

Posted by Gareth Child on 06/23/2009 @ 02:34PM PT
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I guess there is always a balance between accepting differences and trying to bridge differences. But accepting differences can be the first step towards better understanding those differences. I am for accepting a "divide" in the sense of giving space -- space for individuals to be themselves and for individuals to share commonalities with similar individuals -- but not in the sense of accepting alienation and discord. In the words of Rodney King after the L.A. riots, "Can't we all get along?"

But I confess to not fully understanding your reasons for anger -- what makes you "enraged" -- so I am interested in reading what you have to say.

Posted by Twyla Ramos on 06/23/2009 @ 11:08PM PT
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I'm autistic and I get enraged all the time. Everyone (non-autistic) talks nicey-nice and at the end of the day everyone (non-autistic) seems to go home happy. I don't want to talk nicey-nice. I want to talk facts, and results, and it's like the one thing non-autistics don't get. Hello? Why are so many of us struggling so much if you understand us as much as you say? People say they understand me, but they sure don't act like it.

Posted by Anemone Cerridwen on 06/24/2009 @ 07:28AM PT
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Anemone, I'm not sure whether you're talking to me, but I did not say I understand you so much. In addition, I've got some aspie-ish characteristics myself -- I'm generally better at discussing facts than being "nicey-nice". What I did mean is that I think it's better for us all to continue trying to understand each other, so in that sense I would not want to accept a "divide". At the same time, I acknowledge that people sometimes need space in various ways, and there is a need to accept differences -- so in that sense I do accept something of a divide.

Posted by Twyla Ramos on 06/24/2009 @ 08:17AM PT
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Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.