Sunday, December 1, 2013

Tony Brandenburg: Autism Advocacy - Some of the Folks Out There

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Autism Self-Awareness and Self-Advocacy
Lydia Brown (click here) is an interesting individual with strong, practical viewpoints. Ms. Brown is an Autistic and  disability rights activist, scholar, and writer. She is one of the many faces of Autism Advocacy, but that really simplifies her multifaceted life more than it should be simplified. I suggest taking a quick look at her bio, as well as at the Autism Self-Advocacy Network (click here) of which she is a member. I love her candid, sensible, and unapologetic (what do we need to apologize for?) self-affirmation.

Ari Ne'eman (click here) is the founder of the Autism Self-Advocacy Network and serves on the National Council on Disability, a federal agency charged with advising Congress and the President on disability policy issues. My wife Mary introduced me to the writings of Ms. Brown, as well as those of Lydia Brown. Mary is much more in tune to what's up, but I am starting to take note.

Mary thought I would be as enthused as she is by the voice of young, autistic activists out in the field fighting the fight from the top down. By young, politically charged college students trying to change the face of Autism in the larger American landscape. While I am definitely inspired and impressed by them, like so many things I associate with youth (passion, drive, ambition, outspoken advocacy) I found myself disjointed. I was - and am - aloof by nature,  and I felt disengaged and isolated from much of their writings. I suppose it's a generational schism- not on their part,  but on my own insecurities- compounded as much by my own Autistic behavior (whatever that is) as it is by the realization that I am out of touch with what is going on with the younger Autistic generations.

But not nearly as out of it as y'all.

John Elder Robeson (click here) is a writer with Aspergers (to simplify, a form of Autism) from the generation I am closer to in age. His brilliant book, Look Me in the Eye (click here) is an autobiography of sorts chronicling his life as son, brother (his younger brother Augusten Burroughs wrote the hilarious Running with Scissors), and eventual pyro-technician for the rock band Kiss. Robeson has been active in blogging and communicating through the media about Autism from another perspective. Mr. Robeson had been a member of the group Autism Speaks. He stepped down on November 13, 2013.

Thinking Person's Guide to Autism (click here) is as the title implies, a cross between scholarly articles and layperson advice on autism and related information.

Autism Speaks (click here) - founded in 2005 by Bob and Suzanne Wright - are probably the most visible of the advocacy groups active in the Autism community. They are the group who have the cute little blue puzzle piece and who raise boatloads of money through their Autism Walks which are locally held annually at the Rose Bowl.  They describe themselves thusly - Autism Speaks (is the) world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

I have done a few Walk for Autism Speaks, and even had a fundraiser/team in 2013 with Dan Root, the guitarist of the Adolescents. The Southern California Executive director of Autism Speaks is Matthew Asner, someone who I respect and whom I hold in high regard. Matthew was very supportive when my family had a falling out with our local school district and interviewed Mary and I a couple of times on his radio show.

I share this because the actions and activity of the parent group, Autism Speaks, and one of its founders has been very troubling for me personally, and has led me to look toward other theorists and thinkers in the autistic community and move away from the larger, more visible Autism Speaks.

So What is my Problem this Time?
I know, I know. I'm always going on about something, so, what is it now?

Well, a part of me feels duped, and I feel I raised money for a group that are being counter-productive and are working against me, my family, and my community. That kind of hurts. A lot.

My problem with Autism Speaks is two-fold. One is that their position on the JRC (Judge Rotenberg Center) is not as clear cut as I believed it was. The other is that the statements made last week by co-founder Suzanne Wright are personally offensive to me.

Suzanne Wright (click here) made a number of statements so offensive that it is better for me to just list them for the moment. She calls it a call for action, but it really fails the community by using hyperbole, vague generalizations, and scenarios to limit our community and our struggle. I will dissect them at a later date. But to start, here are the zingers and howlers right up front.

Suzanne Wright's Howlers of the Week

1. This is autism. Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.

2  ...What about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill?  How long before they break?

3. Is there a national curriculum for our children?  Are we encouraging teachers around the country to share with each other lesson plans and methods that work for them?

4.  Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help.

5. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

Robison's Resignation Response

John Elder Robison outlined his concerns on his personal blog (click here) as thus:
I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches.  It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

Robison then includes his resignation letter.

One of the things I’ve said all along is that I believe change is best accomplished from inside, through reasoned discussion.  Recent public statements from Autism Speaks have shown that my ideas have not taken hold among top leaders, despite my best efforts.

This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.

Autism Speaks says it’s the advocacy group for people with autism and their families.  It’s not, despite having had many chances to become that voice.  Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.

The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community.  Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions.  The priority cannot be autism parents, or autism grandparents.  It’s got to be actual people with autism.

My Decision to no longer Support Autism Speaks

When I created the team page for our team for Autism Speaks last year (click here) I must admit that I was very uncomfortable with the language that was suggested to me on their page builder, and which was eventually used by me, in order to elicit funds.

Words like disease and disorder are not generally used in my lexicon. I believed at the time it must be for a reason that the words were suggested, that perhaps Autism Speaks had a better handle on the language necessary to raise funds. So, I capitulated and gave in. It was personally offensive to me, and embarrassing because I knew better. I did it anyway.  Sometimes I do stupid stuff.

In any event, 54% of the money raised by Autism Speaks goes right back into fundraising for some more. That is the cycle. And if the cycle relies on offensive language, hyperbole, and generalizations, then for me to continue to fund raise or support Autism Speaks means I am complacent in promoting the WRONG MESSAGE.

So, I won't do it again.

http://sierramadretattler.blogspot.com

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  8. Oh wow, I'd love to know what happened above with all of the removed comments. Tony, have you read "The Reason I Jump"? It's excellent, and gave me a lot of insight into the autistic mind. It also helped explain some of my own personality traits, truly an eye opening read.

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    1. I screwed up. I deleted all of those, plus many others yesterday. All by mistake. I am trying to fix it.

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