After Autistic Speaking Day had ended, I spent a great
portion of that Sunday getting most of the way through with my article summary
for my American Renaissance class, which was due on the 5th that
coming Tuesday. Afterwards, I took some
time to finish my bottle cap picture I had started working on the day before,
and it came out great. I showed it to Kaitlyn, Josiah, and my dad and they all loved it. I also worked some more on my bottle cap wind
chime that I had also started the day before. The next morning, I saw posts and comments from several autistics in one
of my Facebook autism groups criticizing what was wrong with autism awareness,
and how it focused so much on autistics as medical issues rather than people. I spent a lot of the early afternoon reading
the reading for my Cinematography class. After that class had ended, I took the time until the Autistic
Self-Advocacy Network of Kansas City meeting to write a haiku or two and add the
finishing touches to my article summary. Then the meeting, which I was attending through Google+ started. The main topics of conversation for this
month’s meeting seemed to be the JCCC conference-some speakers still wished
they had better accommodations for the meeting, such as a picture of what the
room looked like before they spoke in it, though all were in agreement that the
people running the conference had not meant to be unhelpful-and a video
produced by the Autism Society of the Heartland called Just Like You, talking about how autistics and non-autistics are
more alike than not alike. I couldn’t
see it through Google+, but I, and so did it seem everyone else, thought it was
a refreshing step in autism portrayal, especially considering the negative
light shone by Autism Speaks, though I agreed with one of our members who felt
patronized by them consistently using the word “unique” to describe us.
The
next morning, I read a lot of the reading for my American Renaissance class, and
after all classes were over, I went down to the Einstein Brother’s in the Rec
Center to get myself a coffee and a bagel as a reward for all my hard
work. As I walked away from the counter
with my bagel and drink, it seemed extraordinary to me that just two years ago,
I had come down here, or else the Rec Center in the library, every Tuesday and
Thursday to see my good friend Cassie Burghoff, not to mention that whole time
not suspecting that Cassie, not wanting to admit it, may have had one thing
that meant we had more in common than we thought. After that I finished reading the article for
my American Renaissance class. Then I
ran on the treadmill where I wrote a poem and got the idea to do a drawing that
looks like The Scream except it shows two people wearing autistic pride shirts
and tank tops, with Bob Wright, co-founder of Autism Speaks, wearing an Autism
Speaks pin and screaming and melting. Soon after that I went to Late Night where I worked on my drawing in the
lounge.
I hung out there with Josh,
Jess, and two other female hall residents in the lounge, inconspicuously
working on my drawing, laughing, and enjoying their company, when, all of the
sudden, I saw on Facebook an article shared by one of my autistic friends about
an autistic murder victim, six-year old London McCabe, was murdered by his
mother due to his autism, the very thing I spent so many nights up late
blogging, posting, or doing whatever I could think of to prevent such a tragedy
from happening. I felt shaken, almost
seizure-like, unable to sit still or take a walk to calm down. What, I thought, could possibly be the reason
of a just, fair universe for having such a thing happen? Then I thought about one thing: Cassie. Maybe, such a heart-tugging event of such an
innocent child, maybe compel her to reconsider feeling shame in being autistic, so that she could more readily admit it to herself and others. Autistic or not, I knew Cassie, and knew
such an event would disturb her caring and sensitive nature. I knew what I wanted to do. I got up, went outside, and walked down to
the southwest entrance of the Union, where just up the stairs and to the
right, the first THRIVE formal I went to had taken place, to which I invited
Cassie to, and she accepted, though, due to pressures outside our selves she
ended up not going. It was stressful afterwards,
thinking of a complicated ripple effect I feared it would have on any chance I
had of dating her, but I respected her decision, and I felt our whole
friendship was stronger for all this. I
stood outside, thinking of all Cassie and I had together, and then remembered
another great connection I had that this building symbolized: Erin Hook, one of
the UCM students who died in a car wreck last year. Erin’s friend Jennifer, who also died in the
car wreck, was not there that year the formal, hosted by their sorority Alpha
Sigma Alpha. I sat down on the bottom
step and tears flowed down from my eyes. I knew Cassie would have comforted me about the grief I had felt during
the deaths if she had been at UCM, not to mention shaken by their deaths. She graduated the year before, going back to
her hometown of St. Louis almost three hundred miles away from Kansas City, but
apart from that, her difficult career as a social worker made it very hard for
her to be in a relationship with her nature. And now I knew why. But Cassie,
like Jennifer, Erin, and London, I now had to move on from.
I got up, making my way back to
my dorm through the dead of night. What,
I wondered, had “autism awareness” done for the autism community? I wondered Did Caitlin Stauffer, the Autism
Awareness Homecoming Queen candidate of Alpha Sigma Alpha, know what had
happened to London, that the philosophy she used to gain her crown failed to
stop this tragedy? She had spoken at the
vigil for her two sisters after they died.
Fox News reported it, as did The
Muleskinner, which was sold at Hasting’s. How would London be remembered, except perhaps as someone whose future
would be so dark, that it was justified to stop it from happening, as Kelli
Stapleton, a mother who attempted murder of her autistic daughter, claimed her
child to be, to a round of support by Dr. Phil and the media, not as someone
whose potential was so much, and could have been such that, thanks to his
death, we would never know.
The next day I went to brunch
where I worked on my drawing of the autistic version of The Scream. Afterwards I got back, reminding and pushing
myself to be in the present as I took a shower, and then found out I had a
Creative Problem-Solving assignment due tomorrow, yet I got most of it
done. Soon after that I took a break to
drink a soda, before going down to the library and meeting up with my Creative
Problem-Solving team where we got together, and I came up with many ideas for
our Disney attraction. I then got back
and shared a link about London McCabe with a post describing my feelings about
his death. I said that “Let me just say
to everyone now that if you ever abuse, neglect, discriminate, intimidate,
harass, or malign an autistic of any background, in any capacity, for any
reason or for any cause, I wish for no connection of any type to you, whether
they be professional, romantic, platonic, or even electronic. Let me also say
to anyone who has endorsed, promoted, or manipulated the idea of "autism
awareness" in any way: that the mere phrase "autism awareness"
is not a term for which I will instantly consider you harmful, but if you are
to be connected to that phrase in any way possible, I consider the burden of
proof to be on you that you and your efforts have gone beyond the bare minimum
to respect the concerns, issues, respect, dignity, equality, feelings, and
integrity of every single, solitary person who is in any way, shape, or form a
member of the autistic community.”
I talked to my granddad, who heard
about the death to and was saddened by it. Down at dinner, which I was later joined by Josiah in, I heard of
another autistic boy’s death by his own mother and did another post with a link
on his death. I got back to my dorm and
wrote a poem describing the thoughts and feelings I had on these two young
children before I went to the library and finished my American Renaissance
paper. I got back and talked to Dad, who
I learned also heard about the death before going down to Late Night. I got back and talked to Granddad some more,
sharing more thoughts and feelings on London McCabe’s death, as well as that of
the other boy, who I told him about. I soon also realized with all this going on with autism, the pressure may soon be
or could more easily be put on Alpha Xi Delta to look at their policy on Autism
Speaks. I also wrote another Food
Journal entry for my Anthropology of Food class. After that I wrote a prayer for autistic
people for us to overcome our issues such as Autism Speaks, filicide,
discrimination, and so on called The Autistic’s Prayer, which I would recite every morning until equality is
achieved for us, right after my meditation.
I had to do this properly. No
Buddhism. That night I also heard
through one of my Facebook friends that Alpha Omicron Pi member Jordan Seaman
had just been announced the new UCM Alpha Omicron Pi chapter president.
The next morning I recited The Autistic’s Prayer just as I had
promised myself the day before for what would be the first day of so far almost
two months of saying it. Rather than
hoping to petition a deity, I hoped for this prayer to bring out change in
myself to help me bring change in the autism community, as was a Buddhist
philosophy, but something generic I hoped relevant for all autistic beings and
their allies. Before my last two classes
I worked on my Creative Problem-Solving worksheet, and after class I worked on
my bottle cap wind chime, using my woodworking tweezers to make holes on the
edges of the cap for the strings connecting them to go through. Soon after that I worked more on the Autistic
version of The Scream. Then I went down to King’s Chef Buffet with
Hillary, Mardy, and Michelle where I saw a new trailer of The Hobbit: The
Battle of the Five Armies. After that we
went down to the gym and played basketball for a few minutes before going down
to Fitzgerald Diner to play Bingo, though I left before it started because of
my cough. Later I went down to Late
Night and worked on The Scream some more and saw Jacob. After that, as I was walking down to Break
Time, I saw Josh and Katie walking together, and I learned that Josh was
walking Katie back to her apartment in Hout’s. Wanting to enjoy their company, I walked her back with him. Then I went to Break Time and got three more
small Altoids and some more beers, from which I got a new bottle cap for my
collection.
The next morning, I finished the
Autistic version of The Scream right
before Josiah joined me for brunch. Soon after that I got the idea to do a post on Jude Mirra and London McCabe and
posted it on The Autist Dharma. Then I decided to take a break from blogging
for a while. After that I worked more on my
bottle cap wind chime. I also ran on the
treadmill for about an hour. Then I started crocheting another plarn belt. After that I went down to Break Time and got some chocolate balls and three
Snickers, two of which I decided to save for later.
I did some laundry while I
worked on making one of my plarn belts and undoing some crochet work I messed
up on. Then I started working on a wall
fish made from bottle caps. After that I
ran on the treadmill for about an hour. I got back and talked to Dad and Granddad, the latter of whom said I
wasn’t just into numbers as an autism awareness Homecoming Queen candidate was but cared about the individual also. After that I finished my wall fish and got some great comments on
it. After that I hung out with Hillary and
Michelle in Mardy’s room (Mardy was gone for the weekend).
I wrote some more haiku and
poems down at brunch. I got back,
editing some of the poems I had written in the past few weeks and years a fair
amount, and, despite my promise to taking a break from blogging, got my
Snickers bars for energy, compiled four of them into a post called A Call to an “Autism” Sorority, to the
Alpha Xi Delta chapter heads as Teigan had suggested, to tell them that in light of London McCabe’s
death, his father asks that all donations made in his name go to the Autistic
Self-Advocacy Network or the Dan Marino Foundation for developmental disabilities. I soon saw it got eight views in just today,
not counting three of my own, which I think I got to be clicking on the traffic
sources address to my blog, and they come up on the third page of Google
results for “autism sorority,” and the main people who will be reading it will
be AZD chapter heads who want to read about how their organization is helping
autism, so they will get that far, and there’s one hundred twenty-one chapters,
so now I’m off to a good start in getting their attention to raise the issue to
the National Council. I later looked on
AZD’s Facebook page and saw they were changing their cover album to pictures of
some of them wearing Autism Speaks bracelets to raise support for Autism
Speaks. I realized ASAN-KC could
counterbalance Autism Speaks some more if they did something for National
Philanthropy Day like a hashtag our national branch was doing for Giving
Tuesday. I posted on ASAN-KC’s page
saying we needed to do something for National Philanthropy Day on the 15th
to show the world what a true organization ASAN is. Teigan messaged me back asking, “What do you
mean. ASAN is already a true
organization. We don’t need to prove
anything. What are you suggesting we
do?”
I
responded saying I realize ASAN is a true organization, but I am tired of
Autism Speaks getting so much support from powerful groups thinking their doing
the right thing when we truly care about autistic people, and that maybe we
could do one giant post like we were doing for Giving Tuesday, though it might
be too late to gather up enough people with only six days to go, but then we
also have a whole other year to prepare for next year’s National Philanthropy
Day.
After that I saw a post on
Facebook from an autism group I’m in where a girl posted a picture of herself
saying, “Do you all think I’m pretty. I
have very low self-confidence,” and I commented saying, “From what I see, you
don’t need to be concerned about your looks.
You are a standard issue human being who has something to give this
world. There is no one else quite like
you.” A few minutes afterwards, she
liked that post. Then I saw what
Granddad meant about how I’m into helping the individual. After that I made a post for #GivingTuesday
with the Autistic Self-Advocacy Network, saying:
I support the Autistic
Self-Advocacy Network because they are an organization where people know
first-hand what it is like to struggle from many of the experiences autistic
people like me have. They give me a
place where I feel welcomed and accepted without any stigma, and make me feel
like I have greater resources in doing work that helps create better, more
accessible services for autistic people.
I support ASAN because they pay it forward, not to their executives. I wish ASAN could be in more places, partnering
with more groups, and getting recognition from more institutions, businesses,
and organizations.
No comments:
Post a Comment