Tuesday, March 18, 2014

Autism and Olympics: Not So Special After All

Ok.  I’ll give.  You probably want to help people with disabilities (or at least feel like you do).  The Special Olympics is hosted about a year or so, I guess.  I don’t keep up and you see why soon, but either way you have a chance to do something, you can go see the games, or you can volunteer with the event.  It seems everyone wants to do this because it makes them feel good.  So I guess you’re a champion, right?

            The fact is I think of participating in these games to be like confessing one’s sins to a priest, and then going out into the world to lie, cheat, steal, and all sort of profanity.  To me it’s like this: we’ve jumped over hurdles, we’ve thrown our javelins, we’ve swam several laps, we go back to our lives-now what do we do? 

            The Thinking Person’s Guide to Autism says “We were asked to describe the three biggest problems for people with disabilities, and we came up with this: low expectations leading to inferior education leading to poverty.”  Still think you do everything right?  You think you’re the pinnacle of disability awareness?  Try and answer these questions:

1.       Which of the following is correct spelling?

a.       Aspergers syndrome
b.      Asperger’s syndrome
c.       Asperger Syndrome
d.      Asperger syndrome
e.      Asberger syndrome

2.       Which is the right way to speak of an autistic person?

a.       Person with autism*
b.      Person suffering from autism
c.       Autistic person*

*assuming an autistic person you are speaking in the presence of asks this.

3.       (Assuming you are talking about a person with autism, and their autism is not relevant to the discussion) How do you refer to an autistic person in your class?

a.       Autistic guy (sorry for the gender specifics here)
b.      Girl with autism in my class
c.       Autistic person in my class
d.      My classmate/person in my class/person’ name/etc.

Well let’s see how you did.

1.       D.
A.      The person who discovered this condition was called Hans Asperger
B.      This syndrome is not Dr. Asperger’s.  It is possessed by over ten million people throughout the world.
C.      Syndrome is not a proper noun.  A proper noun would include words such as “Megan,” “Paris,” or “John.”
D.      Correct answer.
E.       I shouldn’t even have to explain

2.       A or C
A.      Some autistic people prefer this as it implies there is more to them than having autism.  If they ask you to refer to us like this in their presence, do so.
B.      Autism does not deprive a person of his or her dignity.  Most people with autism don’t view autism as the source of their suffering, but discrimination. 
C.      Some autistic people prefer this as it implies that autism is not some appendage that obscures a normal human being.  As with A, if they ask you to refer to us like this in their presence, do so.
3.       D.
A.      The person’s autism has no relevance to the conversation.  Saying “Autistic guy” in this case implies that their autism is the only important thing about them.
B.      Same as A.
C.      Same as A and C.
D.      Correct answer.  Using their name is especially correct as they are an individual who should not be objectified.

   Clearly you probably don’t know everything.  But you agree that you can make up for it by watching disabled people play games.  So basically the Special Olympics simply make you feel less guilty.  These games do nothing to give disabled people proper housing, assistive technology, equal employment, proper education, basic access to society.  So I hope if you do any of this, that it was worth it for you, because it’s really meant nothing for us. 

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.

Words for Two Fellow Schoolmates

            I would like to give this post to honor two University of Central Missouri students, Jennifer Reeder and Erin Hook, who were killed in a car wreck near Clinton, Missouri on March 1, 2014.  Hook was 20-years old, and Reeder was 19, four and five years younger than I am.  I just thought I’d share the feelings that have been embedded in me for what seems like too long, and then wrap it up to why I’m doing this post so everyone please be patient with me. 

It just deeply saddens me and I got no sleep last night as I heard about it.  I did not know these girls personally, but the thought of the discovery of those dead bodies on just a seemingly normal day for their friends, family, parents, and the like, and knowing that will stick to them for the rest of their lives simply left me tear stricken.  Lying awake in bed, googling the names, feeling frustrated when a video of the deaths would not come up and saying, Just come on, feeling bad as my roommate woke to ask if I was ok.  I know many good, true, kind-hearted people who I love to the end of my life and lives beyond who are affected by this tragedy, and wished simply that I could of hugged or held some in my arms, and learned that some more of my closest friends knew these girls, and I have spoken to one and gotten to do some of today, and agreed with him to go to a vigil for them with him, hosted by their sorority Alpha Sigma Alpha.  I can only imagine their own parents running into friends not seen for so long, and not being able to catch up without such a profound tragedy being relevant to the talk.  Anyway, I want all people reading this if they have any connection to the deep tragedy to know that you are in my thoughts, and everything I do from waking up, and it is the people I love who are the reason I do anything I think worthwhile.  So if I can give a hand, an ear, an arm, or anything at anything to anyone I will and ask no one to feel any reservations of asking.  Please do not worry about me.  I am much more at ease helping anyone I can with this, and thinking of them and the girls in all I do, and I have much to do, but I cannot speak for everyone in the people affected so please know if this helps even in the slightest that I think of all of you, who I know and not. 

At this point I personally give much gratitude to the Buddha as usual, as I owe many of my own beliefs to him, such as the belief that love is what makes our time together worthwhile and possible, and creates the strong connection from compassion that is the greatest source of healing one’s being.  Hopefully, just hopefully, all can find their source of strength as I talk about finding mine in all my writings hoping to move others to do the same.