(NOTE: The author of this is Michele Montanez, not mjc)
From: Michele Montanez
Sent: Thursday, August 09, 2012 5:57 PM
To: Liz Feld, Executive Director, Autism Speaks
Subject: Walmart and cures
I had the pleasure of meeting you at the National Conference in Chicago a few weeks ago. We spoke briefly regarding the continued use of the word cure as part of the Autism Speaks lexicon. I was fairly emphatic that it is past time for us to stop using this particular word. A quick look at another parent who was standing with us informed me just how difficult a decision that would be; he looked vaguely like I had stabbed him for suggesting that. To many of our parents, a cure is the holy grail of autism.
There’s a big “but” in all of this. For many years, autistics themselves have been fighting to be heard. Their voices are getting louder and louder. We purport to speak for autistics as well as the parents that form our backbone. The vast majority of them, the ones that advocate for true acceptance in our world of autistics as they are instead of as close to neurotypical as we can therapy them into, are emphatically opposed to the word cure. We promote advocacy and acceptance, and yet when the very people we promote advocacy and acceptance define what that means for themselves, we continually ignore it. Ironic for an organization who’s tag line is “Autism Speaks. It’s time to listen.” We are not listening to the group who matters most in our mission. Our attempts to get autistic self advocates to the table to work with us, instead of vilifying us, will never work as long as we continue to overtly, persistently, and knowingly continue to be offensive.
The newest outcry is over the line of school supplies just introduced at Walmart. The packaging quite clearly states “6% of the net proceeds will be donated to Autism Speaks, a non-profit organization dedicated to finding a cure for Autism.” There was absolutely no reason for the packaging to have to read that way. It’s being seen as fighting words (click here for an excellent summation of that: (http://thautcast.com/drupal5/content/dear-autism-speaks-cure-still-...), and this time I have to agree. How many thousands of school children are going to see that and perceive their autistic classmates as somehow being broken? How many self-aware autistic children are going to see that and perceive themselves as being somehow damaged, or less than? It would have taken so little to create packaging that was at least reasonably sensitive.
I’m a long time supporter of Autism Speaks (I’m going into my 9th year as a Walk volunteer in NYC), and I firmly believe in the work that we do. However, it is well past time to do it with sensitivity and listen – truly listen – to what autistics have to say about themselves and how they wish to be treated. Only then can we ask autistics to come to the table as equal partners in our mission. Only then can we truly claim to represent the autism community in its entirety.
Walk Volunteer, NYC