Friday, November 15, 2013

Friends, family, everyone else; read carefully, take heed

I have often wondered why Bob and Suzanne Wright chose the name "Autism Speaks" when that so-called charitable organization was founded in 2005, the name would suggest that we are unable to speak for ourselves. Maybe it was not unintentional, but probably was the the core idea.

At this point, I do not want to judge anyone on the autism spectrum who does associate with or receive services from them (whatever those services are), but a long-running complaint against them was the lack of representation of actual autistic people, either employed by them or on their board of directors (even in an advisory role). Being someone who is currently (and proudly) the Nova Scotia representative of the Advisory Committee of the Autism Society of Canada, I did not want to put anyone on the spectrum in a "Catch 22" situation who is currently employed by Autism Speaks or any of their chapters (I wanted to give them the benefit of the doubt that they are trying to steer them to a righteous path). As much as I disliked 'Autism Speaks' since their inception, I still held out some hope for them, that they would acknowledge their scientific and ethical mistakes and atone for them. (What's Wrong With Autism Speaks? Let her count the ways). But as of this week, I have abandoned all hope for them, they are dead to me.

While they do use some of their donations to fund scientific studies, their overall purpose seems to be to eradicate, or 'cure' autism, and funded medical studies towards that dubious end. But they have descended into a scientific and moral basement, when they gave an endorsement for the Judge Rotenberg Center in Canton, Massachusetts (brief wiki here). At an upcoming Walk Now for Autism function in Washington, D.C., they have listed the JRC as a 'service' and given them a booth at a resource fair planned for that day (explained at length by Autistic Hoya). As a result of this decision, John Elder Robison has announced his resignation from a couple of boards of Autism Speaks, and explains his decision quite thoroughly.

So in short, if you want to remain on my good side (and you know you do >:-), you should not give any acknowledgement to that particular outfit, and if you should run into a representative of Autism Speaks, tell them to take their puzzle pieces and shove 'em.

P.S. An acknowledgement of gratitude to Jenny McCarthy, from a 31 year-old woman with pertussis.

No comments: