The day I spoke at the panel for adults with autism was
over, and the end of July was approaching.
That day I went to Starbuck’s and read Water Touching Stone some more.
I also learned that Nantucket Nectars, a drink I got on my breaks so
frequently at Hen House because I liked to collect their different bottle caps,
which all had facts about the island of Nantucket, was sponsoring the group
Autism Speaks, which I and many other autistics and allies disfavor for their
budget which went mostly towards genetic research of autistics, ads, which
often do things like equate having an autistic child to being struck by
lightning, and six-figure salaries for their executives, not to mention having
not a single autistic in their board or general membership since their last
openly autistic employee John Elder Robison resigned after Autism Speaks
cofounder Suzanne Wright made a speech at George Washington University where
she basically claimed autistics to be burdens on families and societies. On hearing this I decided I would no longer
buy Nantucket on my breaks at work until they stopped their sponsorship. AS, I believed, makes it hard for real
autistics to raise their own voices to fight autism discrimination. The next day I worked for eight-and-a-half
hours as I had done before getting a new Sweet Leaf Tea bottle cap, which had
different sayings called “Grannyisms,” for my collection from my drink on my
first break, and two different USDA caps, which all had either six-word memoirs
or quotes from famous individuals, on my lunch and last break. I worked the next night from 4 to 9:30, and
the next night from 4 to 7, getting a new USDA cap for my collection from my
drink with my dinner at the end of my shift.
The next day however, my mom told me that we leave for Colorado on the
first of August, when I was supposed to work from 4 to 7, so when I got to
work, I asked my coworker James if he would be willing to trade shifts with
me. I learned he worked the next day
from 10:30 to 7, so I agreed to trade shifts with him then, so I would be able
to go to Colorado. On my first break I
got a new Sweet Leaf Tea cap, as with my lunch and second break, but during the
latter, something happened that grabbed my attention. I looked at the Wikipedia
page of the sorority Alpha Xi Delta, trying to learn something about their
support of the organization Autism Speaks,
Unfortunately, what I read about AXD was absolutely disgusting to
me. Apparently, “Sisters ‘raise
awareness’ in various ways, including passing out blue ribbons, placing
advertisements in campus and local newspapers, distributing information in the
community and appearing on local television programs to educate people about
autism.”
So
AXD helped spread Autism Speaks’ poisonous ideas too, did they? They would spread ideas that were hateful to
autistics and alienate those on their campuses?
I could not think. I did not
believe they respected autistic people at all.
I remembered being invited to a college friend to the Tau Kappa Epsilon
fraternities local chapter, and after the others thought I was someone they
liked, they gave me a bid for membership, which I declined to focus on starting
the Autism Spectrum Support Group for UCM.
But I doubted that had I been an openly and happily autistic woman at
AXD’s Rush Week that they would have been so fair to me. We could of course protest their walks, as
had happened in Columbus, Ohio, though I felt with an irresistible jolt of
anger, that like with our brothers and sisters in Columbus, the women of AXD
would probably give us the “F@#! you!” along with hurling at us sandwiches and
drinks that had happened everywhere we had protested. I had seen these sort of
girls in my life too much already. We
(the autistic community) had to boycott them in some way, but how? Had we not exhausted all our methods as we
who disliked AS were also boycotting other companies that sponsored them, such
as Joe’s Crab Shack and Home Depot?
Perhaps, I thought, the early American colonists stood up to the British
by driving on the right side of the road, as a opposed the Brits, who drove on
the left, and called biscuits cookies; perhaps we could do the same thing?
I
went to dinner at Panera with Cam and my dad after work, my mind still occupied
with AXD’s complicity in Autism Speaks’ harmful acts. I got home and learned one of AXD’s symbols
was a golden feather quill, symbolizing, “the pen being mightier than the
sword,” while their mascot was a teddy bear, the BetXi Bear; what would be the
opposite of that? I looked up “opposite
of teddy bear,” and found several answers including an asteroid and a
porcupine, the opposite of cute, soft, and cuddly. That didn’t do it for me. I think vainly, “Maybe a Schwinn bicycle,
they are not made by kids in factories in China?”
At
last I called my granddad and told him my concern. He said, “I understand, but I think you
should write a letter to them, and maybe get other people to write letters to
them because I think you could get your ideas across.”
“Ok.”
I said.
“And
remember, you can do a lot more for the autism community than just criticize
Autism Speaks.”
“Thank you. You came through for me when I needed it.”
“That’s
what I here for.”
After
I hung up, I decided to make my “Boycott Alpha Xi Delta” symbol a porcupine
anyway. Porcupine was the name of a town in Second Life where several
autistic rights activists gathered. And
I looked up “porcupine symbolism” and learned that in Zen martial arts it is
associated with being aware of one’s surroundings and defense without being
aggressive. I thought, “That sounds like
us autistics. We don’t want to be
aggressive; we just want to live our lives.”
Also, for its size, a porcupine is very able to defend itself against larger
creatures, including a bear, or a BetXi Bear for that matter, just as autistic
people can defend their rights even as a minority group. What’s more, porcupines may not be cuddly,
just as many autistic people don’t like to be hugged, but that doesn’t mean
they’re less important to this world or this ecosystem. I also read that porcupines symbolize leisure
and storytelling. That makes sense I
thought, because porcupines provide us with quills, like for writing, poetry,
and calligraphy practiced by East Asian warriors, just as AXD has their feather
quill. It made a very good symbol for autism in general, I thought. So I went ahead and did it: I
changed my Facebook album cover to a porcupine, and saw that within the first
twenty minutes, it had already gotten three likes, one from Barbara Mayfield
and my grandmom. Feeling satisfied, I
retired from autism work for the day.
The next day went very much the
way Sunday did. On my first break I
found out I got a Facebook message from Sean Swindler, my advisor at the JCCC
Autism Spectrum Support Group, asking me if the Autistic Self-Advocacy Network
of Kansas City would like to participate in JCCC’s Autism Across the Life Span
Conference on October 24-25. I told him
we would be glad to. I realized that
what my granddad said was true: I could do a lot more for autism than just
criticize Autism Speaks. Later I got two
more USDA caps during my lunch and second break, and soon after I got home I
packed to go to Colorado the next day.
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