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Roger N. Meyer "...of a different mind "
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I WRITE TO A 17 YEAR OLD ADVOCATE

Roger N. Meyer Copyright 1998

Comment below 2005

 

 

 

     [The following post was sent list-wide to Autism Network  International  (ANI) after I first sent it to a brilliant young seventeen year old self-advocate whose web site I stumbled across in my early days as an adult advocate.  It was written a few days before I founded the Portland Asperger Syndrome Adult Support Group.  At the time I sent this point, I wished my anonymity to be preserved, mainly because of the risk of being misunderstood by persons not on the spectrum and my research co-principals at the time.  That time has long since passed.  As of April, 2005, Chris's web page does not seem to be working.]

 

     I almost sent the message below as a private post to an incredible young man, Chris Slater.  His website is:  http://www.win.bright.net./~kkp/index.html

 

     After agonizing a long time about the post, I decided to keep my response to him very simple, but not because he is "simple."  Far from it.  Chris has all the right bells and whistles.  He is good.  Really good.  He's also 17.

 

     Here's what I wrote Chris.

 

     Please do me a great favor, and do not share this response with anyone else, though you might be tempted .  I view it as a private communication between two kindred souls.  If you reveal it to others, no matter how good your motivation, it can be misinterpreted, and could act to undo a lot of the things I have already accomplished.  It could also ruin the career I have undertaken.  I know that this is placing trust in a "stranger,"  but I feel I know you well from our contact on #autism[an early autism chat list], and through your writings on your webpage.

 

     I'm the same Roger you see every now and then, mostly then, on #autism.  I'm that grey haired, little short fat guy from Portland, Oregon who hugs trees, and, mostly, himself.  Like you, I have learned the joys of being with others not the same as myself.

 

     I made it through undergraduate school, Phi Beta Kappa Junior year, Summa cum Laude and all that jazz.  All of my shots at graduate school, whether law school at the University of Chicago, doctorate track at UC Berkeley, labor studies at San Francisco State, and social work at Portland State University, all separated by enormous chunks of time, left me a quaking living-under-the-bridge kinda guy.  Things never got to the point of hospitalization for depression following each debacle, nor did I ever want for a roof overhead or beans on the plate, but I hope you understand what I mean.  I decided after 26 years of being a cabinetmaker, and after my last layoff this past March, to junk the skilled blue collar trades, and do something that really feeds "me."  I love to write, have a wicked sense of humor, love helping people, relish turning over rocks for resources, connecting people with one another, educating and advocating, and being in control of how much I can be as a people-person as I wish to be at any given moment.

 

     This is what led to the acceptance of my book by Jessica Kingsley Press, the same folks who bring us Tony Attwood.

 

     On Friday afternoon last week, I was asked to contribute some writing in an article to be in a future edition of Focus on Autism and Other Developmental Disabilities (Pro-Ed Publications).  For someone without all the blue-blood graduate degrees, you can imagine the thrill. I rushed around soliciting and collecting information like a madman for about 30 hours until my head cleared to a point that I could write.  My chunk of the article is about the history of self-advocacy of us folks with high functioning whatsis, whether we want to call it HFA or AS.  I know there are distinctions, but probably like you, I am not hung up on them.  We know who we are, we know what we got, and that's all that matters.

 

     What you know wasn't known four years ago.  For us adults, its been "unknown" almost forever, and we have the scars to prove it.  I have dedicated the life I've got left, and both sides of my family are long-lived, to making a difference for myself and all of us folks with differentness.

 

     In the article I wrote today, I wrote in a way as to gently challenge the academics and the power broking "experts" out there to wake up and smell OUR coffee. Chris, all we need to do to discover our own history is go to the Internet, and that's what I have done, for over a year now.   As with your parents and all other parents out there, we are the experts on what we need, and I am damned sick of the "experts" cranking out their own agendas on my steam engine and calliope.  I got the music, I stoke the fire, now let ME at the throttle of this damned thing.  "You can lay the track if you wish," I say to them," but I choose the route.  I determine when to depart, and when to arrive.  I  blow the whistle."

 

     Well, I have to be polite.  I have to do some acting to get in the door.  These are the gowned experts, don't ya know.  Its readers are the great icons of the age.  The whole point to my article is an illustration of the very fact  that we know more than they do because theirs is "book larnin'.

 

     I don't pound the point home.  The writing speaks for itself.  Their knowledge waits for permission from their fellows in cahoots to become the chapters in the new Bible.  The bowing, scraping, politicking, mendacity, empire building, cat-spats, gate-keeping:  all of this is challenged by the telecommunication technology revolution.  We can conduct research and publish our findings in public.

 

     They grant one another permission to speak.  We share our personal experiences and tell it like it is.

 

     They "report" on us as though we are the anecdotes to reality, as though our sole function in life is to be their research subjects and  "prove" their hypotheses.  They want answers.  So do we, but our needs are almost completely incompatible.

 

     I have my own variant of a well known phrase:  "I don't need no stinkin' hypotheses."

 

     Is my passion showing?

 

     Yours is a wonderful example of the power of knowledge turned to pride in ourselves, turned to support of others, turned to support of a much greater cause than ourselves just as individuals.  When I included a sketch of the implications of this thinking and action  in the material I submitted for the jointly authored article, I was reminded that the article has a stand-alone significance and a narrow focus.  I accept that for the time being.  The schema I came up with to explain what self-advocacy really means doesn't fit within the carefully crafted coffin of how the "experts" view self-advocacy, and up to this point, they write the dictionary. 

 

     My editor and my co-author both said that the terms I used  -- I coined two of them -- aren't "accepted" yet.  You bet they aren't!  One of the terms rejected was cause advocacy.  They not only disputed my right to coin the phrase; they disputed it's very existence because they don't recognize it.  But then they do.  They say we aren't there yet.  Because my concept doesn't fit into the accepted canon  -- the liturgy -- of their sacred field of disability studies, it can't be even be introduced!   What boffo arrogance!  They're not only arrogating to themselves, exclusively, the right to conceive all neologisms,  they're also determining the time of their delivery.  Try to do that with anyone who's pregnant and whose waters have already burst.

 

  The academicians are so interested in covering their butts, protecting their little medieval institutional fiefdoms of specialization and arcana, praying over the parchments of the illustrated sacred writings like the scribes and monks in the middle ages, determining the grammar and meanings of our own language that can't see the present and certainly not the future even though it is staring at them right in the face.  (And you know how difficult it is for us Aspies to look others in the eye.)  But even with that "myth," we are right in our assertion that there is more than one way of "seeing" things, and that it doesn't take the confrontive, assertive form of western culture.  In the East, Middle East, Africa, and Australia,  and among many indigenous populations, looking a person in the eyes is a sign of gross disrespect, insensitivity, and an arrogant display of power and analog logic that if carried to the extreme, would shatter the underpining of worth and dignity accorded individuals in that society.

 

     Chris, you are riding the crest of the first wave of a movement every bit as exciting as those of the 1960's and 1970's.  Those movements made a difference.

 

     So can ours.

 

Copyright Issues

 

This article is copyright, all rights reserved by the author, Roger N. Meyer.  It may be reproduced in single copy once for personal use, and in no more than ten copies total for educational purposes.  Fair Use is authorized for all purposes and under conditions established by US Statute and the International Copyright Convention, to which the United States is a signatory nation.  No person shall publish, distribute, copy, or by other means make this material available to others for purposes of personal gain or professional self-aggrandizement.  Individuals wishing permission to exercise other than fair use or limited distribution as outlined above must contact the author, in writing, and receive explicit written permission from the author prior to engaging in further use of this material.

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