The day after I got home I spent part of the day in
Starbuck’s reading J.R.R. Tolkien’s The
Silmarillion, and to my surprise, managed to get over twenty pages into it. On my way back I went to Rimann’s Liqour
Store and got a new bottle cap for my collection from a giant bottled water I
got there. Unfortunately that night my
cold that I had been developing over the past few days started getting worse.
The
next morning I drove down to Johnson County Community College to attend the
Autistic Self-Advocacy Network of Kansas City’s presentation at JCCC’s Autism
Beyond the Diagnosis Conference. I got
there and went down to the Nerman Buidling, where I found Sean Swindler, the
man who had helped me so much at starting the JCCC Autism Spectrum Support
Group, as I went to get my nametag. He smiled at me, held out his hand, and I shook it.
“Ben,”
he said. “It’s good to see you. How are you?”
“Good. How are you?”
"Good. I just wanted to tell you the group you
started is going great. We get about
twenty-five people to come each meeting.”
“Wow! That’s great!”
“Yes,
it’s going great. And you started it
all.”
I
then saw another familiar face I recognized from JCCC, Mary-Jane Billingsley, a
faculty member from the school who was a great supporter of the great. I approached her and she was overjoyed to see
me. She said a JCCC Autism Spectrum
Support Group member recently presented at the conference and it had one of the
largest turnouts they had had in a while. Soon I met up with Pam, Daniel, Spencer, Skyler, a young female ASAN-KC
member, and a tall bearded member, Bart Ewing, a social worker who worked with
autistic children and I met for the first time.
As
it was time for the presentation to start, I went into the designated room and
met Elizabeth, Elise from Horizon, and Erin from Camp Encourage, as well as a middle-aged
blonde women and a wiry-haired, broad-shouldered black young man. I talked to Elise, who told me she was going
to the movie benefit for Camp Encourage, which I had invited her to on Facebook
later that day.
11:30, the time we were supposed
to start, was approaching, yet Teigan and Marshall had not yet arrived. Spencer went up to the stand and said that
they called and had car troubles and were running late. As 11:30 came, they had not yet arrived and
Spencer began the introduction, explaining the mission and history of ASAN and
its local Kansas City chapter. Soon
after, he finished and Pam continued, telling the audience about person-first
language vs. identity-first language (person with autism-denying autism as part
of a person vs. autistic person where one acknowledges it), and mentioned how
still if an autistic person prefers person-first language, you should use it
around them. The young female member
went up to the stand next and spoke on autism rights. Skyler went up next to tell the audience
about self-advocacy. Bart then spoke
about accommodations for autistic and disabled people. Then, finally Teigan and Marshall arrived and
gave their part of the presentation.
Marshall spoke at length about neurodiversity, and then Teigan spoke
about cross-disability activism. As the
presentation ended, the floor opened to questions. The blonde women asked about her son with
Asperger syndrome, and how they felt he might fit into the group. Teigan answered saying anyone who agreed to
our rules on respect for disabled people were welcome to come. Then Erin raised her hand and said, “I agree
with your idea of accepting autistic people the way they are. I just wanted to ask, how do you ask an
autistic person whether they want you to use person-first or identity-first
language?”
Elizabeth
spoke up.
“I
think just the way you worded it is fine.”
The
presentation ended and I met the audience and ASAN members outside the
room. I approached Teigan and asked her
when we were having the silent auction. She said we weren’t going to have it, as she couldn’t reserve a room at
UMKC, but we might have it in January. I
also told her about The Friend of Autism Pledge,
and she said if I e-mailed her with it, they might be able to put it up on
their website. The blonde woman
approached me and asked, “Are you Ben Edwards?”
“Yes,”
I said.
“Well,
I just wanted to let you know I read your blog and thought it was just great,
all that you chose to put on there. I
love how autistics are just so honest.”
I
laughed.
“Well
if you liked my blog, there’s something else I did that you might like.”
She
nodded.
“It’s
called The Friend of Autism Pledge. Basically it’s a pledge of how one agrees to
treat autistics, it’s on my other blog, and if you agree with what it says you
can add your name to the comment section and I will put your name on a list
outside the door of my dorm at school. I’m
trying to get more autistics there to be able to be open about their condition
so I can start a group for autistic students.”
“Ok,
well I will look at that. Can I get
there from your other blog?”
“Yes.”
The
young black male held out his hand and I shook it.
“Hi,
my name’s Cole,” he said.
“Hi,
I’m Ben.”
“She’s
my mom," he said, pointing to the woman.
Soon
I met up with Erin and Elizabeth. I told
Erin about The Friend of Autism Pledge
and said I could send it to her via e-mail, and if she agreed to it, I would
put her name on my list.
“Ok,”
she said and gave me her e-mail address.
We
all went out into the Nerman lobby and sat down. Several of the ASAN members were saying that
in the future they would like to have an idea of what the room they would
present in looks like beforehand, to avoid sensory overstimulation. A dark-haired woman sat around them and
listened to them. She saw me and spoke
to me.
“Ben?”
“Yeah.”
“Hi,
I’m Jennifer Smith, the president of the Autism Society of the Heartland.”
“Oh,
nice to meet you,” I said, shaking her hand.
We
sat talking for about another ten minutes until I got up and told them I was
going to drive back home. We said
goodbye and I drove back to the house.
After
I got back and went down to Starbuck’s again, reading up to thirty pages of The Silmarillion. Soon after, I got the idea to take some of my
unflattened bottle caps (which I had duplicates of), flatten them, take some of
my flattened ones, and make tambourines like I had last year, only this time
with one stick that the caps were connected to by nails. I went down to the hardware store, got a
short rod, got back, and made a tambourine. Later that night I also read more of The
Silmarillion, getting forty or so pages into it. Unfortunately, my cold still got worse.
The
next morning I finished scooping Peter’s litter box when I heard a knock on the
door. I went downstairs and saw who it
was. It was Riccardo, one of my best
friends from high school.
I
let him in and learned he was here to talk to my mom about doing some work for
her. I brought him to her and they talked
about it. He also said in a few days he
would be going to Italy to visit relatives for about a week. Soon my mom asked if he and I were connected
on Facebook, and he said we were. He
also said we had a few mutual friends including Teigan Hockman and Marshall
Edwards from the Autistic Self-Advocacy Network of Kansas City. My mom asked, “Oh, are you a part of ASAN-KC?”
“Sort
of. I don’t really know much about it.”
“Well
you should talk to Ben and learn about getting involved.”
“Sure,”
I said, my heart racing at the prospect. “We could go down to Starbuck’s and I could tell you about it.”
“Ok”, he said.
We
walked down there and ordered our drinks. Then we went outside, to a cool October afternoon and sat down with our
coffee. Finally I said, “So about ASAN…”
“Yeah?”
“Well,
we’re a group that pushes for greater inclusion of autistic people in
society. We were founded eight years ago
by two young autistic college students, Ari Ne’eman our president, and Scott
Robertson our vice president. We have
chapters all across the country including York, Sacramento, Michigan, and of
course, Kansas City. We also have
chapters in Australia and New Zealand.”
“Well
that’s good.”
“Yeah. Anyway, one thing a lot of us do at ASAN is
use identity-first language when talking about autistic people, meaning we say 'autistic
person,' rather than 'person with autism,' basically to denote that we don’t
think autism is something that needs to be hidden about one’s self for them to
be respected.”
“That’s
good,” he said, nodding.
“We
also believe in a concept called neurodiversity, where we believe all brains of
people, whether they are autistic, not autistic, dyslexic, or whatever, should
be respected the way they are and people with them should have equal rights to
society.”
“Good,”
he said, looking interested.
“And
we also are a cross-disability group, meaning we work with groups of people
from all different disabilities to promote equality and access for all of
us. So we work with organizations of
people with Down syndrome, dyslexia, Tourette’s syndrome.”
“Well,
I have a question?”
“Yeah?”
“How
can I get involved?”
Relief
came into my body.
As
we walked back to my house I told Riccardo how ASAN-KC met every month and how if
you couldn’t attend in person, you could attend on-line through Google+. I also told him about my Friend of Autism Pledge, and that I could send it to him, and if he
agreed with it, I could add his name to the list of names on my door. He agreed to let me send it to him, and when
we got back, he gave me his e-mail address.
He
hung out at our house for a little while, watching the football game with
us. Meanwhile, my cold had gotten almost
unbearable. Soon Riccardo left, and
around that time, I got packed up, and my mom drove me back to school, while I
felt too tired to drive myself. We got
back and she insisted on vacuuming the room herself for a little while. She also located a package in my room that I
hadn’t opened yet, and inside it turned out to be a whole bag of Wasabi peas,
which she said would be could for my sinuses. She left me with some cough drops, and later I went down to dinner. I got back to my hall, deciding to just rest,
and went out into the lounge and read more of The Silmarillion, getting almost fifty pages into it.
