Saturday, March 8, 2014

A Real Call to Action: How a Certain Summit Address Should Have Gone

         In November of 2013 Autism Speaks cofounder with her husband Bob, Suzanne Wright, the grandmother of a child with autism (where's baby girl in all this?) made a speech at a policy meeting at George Washington University where she spoke of autism as an irredeemable burden that must at all costs be eliminated if families and communities are to heal.  This isn’t the first time this organization has done something of this nature.  Years back, Autism Speaks executive Alison Tepper Singer made a statement in The Oprah Winfrey Show where she said that when she found out her daughter had autism, in the presence of the same daughter, she contemplated driving her car with her autistic daughter into the lake but decided against it because her neurotypical daughter was waiting for her at home.  Singer, along with all other Autism Speaks executives, was paid a salary over $200,000 dollars a year, despite the laws applicable in the United States to be considered a non-profit organization.  Meanwhile Autism Speaks produced another video from none other than the director of Harry Potter and the Prisoner of Azkaban, whose son is autistic, called I Am Autism, with narration saying, “I am autism…I work faster than cancer, AIDS, and diabetes combined, I will make sure your marriage fails, that you never hold done a job, that you never attend a church or temple.”
Naturally Suzy’s little accident caused hoards of former Autism Speaks members to leave the organization and withdraw all their funding for it.  Most prominent among them were Autism Speaks only openly autistic member John Elder Robison, author of the bestselling book Don’t Look Me in the Eye, and the father of a college student with Asperger syndrome, who lives on a campus apartment with his girlfriend, who also has Asperger syndrome, and a mother of an autistic girl, who Miss Suzy hugged at the summit despite the girl’s objections, and author of the popular autism blogA Diary of a Mom, describing her liferaising two daughters, the youngest of whom is autistic. Both of these parents spent years trying to reform the organization from within and the pageant girl’s book report was simply the last straw.

                A Diary of a Mom has dealt with numerous critics, perhaps people asking, “What was little Suzy supposed to have said?  She wanted to raise awareness.”  Well Jess, the blog’s author, has recently coined a phrase (not so new really) to apply to the world of autism, “Love, not fear.”  A whole post, where Jess, who admits to worrying that her daughter would never live on her own, had what I, a flag-waving autistic pride believer, call extreme autism acceptance.  That can be understood though, as her blog goes clearly into all the way her daughter Brooke has enriched her life, the view of love, as opposed to autistics as threats who must be neutralized, ol’ Suzanna’s view of fear.  If she had spoken with love, rather than fear (two things that Bible says are mutually exclusive, maybe her speech would have sounded more like this:

                If one in eighty-eight people [not children] were missing, we would have a national crisis.  Well we do: autism discrimination.  Maybe they are the people are the people we raised from diapers.  Maybe they are the people who raised you from diapers.  This is autism.  Maybe they are the person who stared in our production, modeled our products, saved our sick pet, treated our depression, worked with our child with special needs. Maybe they are the person we teared up next to as we said vows at the altar, who held our hand at movies, who held us when we suffered tragic losses of friends or family, who we began a family with.  Maybe they are the people we saved from addiction as we believed in them so uncompromisingly that they could heal.  Maybe they are the people we knew from diapers, roommate in college, godparent to our children.  This is autism.  We are facing a national social injustice.  Hundreds of thousands will soon grow up without access to jobs, education, or housing.  This is a call for action.

End of speech.

                Clearly Mrs. Wright has somewhat of an adorable 1940’s view on disability. Rather than simply children (moreover children who burden you economically), autistics are workers, teachers, counselors, doctors, husbands, wives, boyfriends, girlfriends, friends-with-benefits, fathers, mothers, coreligionists, authors.  Basically autistic people are human beings!  The fact that autism is associated with financial stress by even comfortably middle class people is not doubted.  The fact that for every person to see their loved one discriminated is not doubted either.  It’s torturous!  No human should have to suffer that.  But the fact that autistics, as Suzanne is saying, are merely objects of parent’s (usually/always moms) distress is completely wrong and dangerous.  Yet so many people say, “But, Ben, Autism Speaks has raised so much money (that they’ve raised money-can’t argue with it-what they’ve done with the money) and they have so many celebrities who endorse them.”  Well videotape my swimsuit areas and call me a Scientologist!  I believe in them!

                Now let’s assume, for the sake of argument, that you are a hardcore fanatical fan of Autism Speaks, who admits they have flaws while exhibiting redeeming qualities: you ask me Is there something to fear?  Yes!  I fear for you!  Any organization that spreads stigma works against the best interest and the needs of autistics and the people who love them.  Whether you know it or not, Autism Speaks’ corrosiveness affects you as it does your loved ones and time is running out for many people with autism to adjust to the world so they don’t have to live in such great comfort.  When you’re done playing dollhouse with miss ballerina and ready to start a vocation though I’ll be happy to hear from you.

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