On the first day of Labor Day
weekend, I went to Mickey Surplus’s army surplus store with my dad, Cam, and
Nora, where I ended up getting a paracord bracelet making kit, a length of
nearly one hundred feet of paracord, and a military can opener, which I assumed
could also be used as a bottle opener when I didn’t have my pocketknife due to
going through airport security to get home from Colorado. While I was there, I also got four calls from
the same number. When I got home, I
returned the call and found out they were from Paige, the new THRIVE student,
who called me to wish me a happy Labor Day. Later on, I went to Starbuck’s as I
had done so often before the summer started and read more of Water Touching Stone. I also found some time to talk to my friend Tyler. I also make another one of my leather braided
bracelets for the Autistic Self-Advocacy Network of Kansas City’s silent
auction to be held in November. I did
that again the next day and got a soda from Better Cheddar, from which I got a
new bottle cap for my collection. I also
ate dinner at the Hereford House with my dad, Cam, and my grandparents. The next day I went back to UCM and continued
one with my life as a student.
Living away from home with Asperger syndrome, working to start an autistic student organization in small town Missouri with the everyday challenges of school work, friends, relationship prospects, campus involvement, and independent living, with only my friends, family, faith, passions, heart, mind, and community of like-minded individuals for support.
Autistic UCM
Landmark Writings
Tuesday, September 30, 2014
Monday, September 15, 2014
Back to School Mule-Style
I scooped Peter’s litter box, read my Lonely Planet
Turkey and Central Asia books, and cuddled Peter before my dad picked me up and
took me to Warrensburg. He gave me his
presents, a Native American flute and a build-your-own ocarina kit, and I
opened Mom’s, a Leadville, Colorado shirt, and Uncle Todd’s, Aunt Laura’s,
Abby’s, and Eric’s, a book on paper art and an ecofriendly sketchbook. Then Dad and I ate at Crazy Dog’s before he
took me to UCM, and we got all unpacked. After that, I got my room all organized. Then I made another bracelet from leather, as I had promised to make
every day before the silent auction for the Autistic Self-Advocacy Network of
Kansas City. I also did some more
of my word search from Colorado. I went
to the mandatory floor meeting where we introduced ourselves, and told everyone
our major, hometown, and hoe old we were. When it was my turn I said, “My name is Ben Edwards, I’m from Mission
Hills, my major is Cultural Studies, and I’m twenty-five years old, which I
just turned today.”
Right
away, everyone started clapping and singing, “Happy birthday to you.”
Mardy and I filled out our
roommate agreement form. Then we went to
the Mule Kick-off where I saw my friend from middle school and friend on the
autism spectrum Ian Sneid, I talked to him and during that time I learned he
was living in South Yeater hall, and I told him about the group.
“Anyway,
if you want to come, you’re welcome to,” I told him.
“I’ll
think about it,” he said.
I also met Paige there, a new
THRIVE student with Down syndrome. Mardy
and I then went to the THRIVE hall and met Blair, another new THRIVE student
with Down syndrome, and hung out with her, Mary, her roommate, and Jade. Afterwards we went to see The Secret Life of Walter Mitty on the
lawn of the Central Baptist Student Union.
The next day I had breakfast
with a new student in Ellis who is getting to know new people here. Then I read over some more of my Lonely
Planet Turkey book. Afterwards I had
lunch with some people from my hall. I also went to the library where I saw several birthday wishes for me on
my Facebook page. To show my autistic
pride, I changed my Facebook name from ‘Ben Edwards’ to ‘Ben Edwards Au’ in
reference to the chemical symbol for gold, which are the first two letters in
‘autistic,’ prompting members of the autistic community to launch “Light it Up
Gold,” as opposed to Autism Speaks’ medical autism model based Light it Up
Blue, and for many autistics on Facebook, including several of my autistic
Facebook friends to add Au to the ends of their names to. It would take sixty days for the change to
take effect. Then I ate dinner with the
people on my hall including Drake, a tall dark young man with a crew cut; Alex,
a tall black man; Josiah with dark spikey hair; Cameron, a short dark-haired
girl; and Sara with bright shoulder-length blond hair. I got back and talked to Granddad, who liked
my idea for the Facebook name, thinking it was a good idea just like my
porcupine picture. Then I went to the
hypnotist with people from my hall where I go to know several of them. After I got back, I went down to Break Time
and got some beers.
The next day began both my
Anthropology of Food class and my American Renaissance class. Before my Creative Problem-Solving class,
which started fifteen minutes after the latter of the two other classes
finished, Hillary texted me saying she needed help finding her two o’clock
class, which took place right across the hall from my American Renaissance
class, so I waited for her near the Rec Center and took her back up to that
hall to help her find her class with five minutes left until my next class
started, making it there just in time. After I got out of class I got out of class and bought a new poster of
Albert Einstein and a print of Andy Warhol, two individuals reputed to be
autistic. I got back and spent some time with Hillary
and Mardy before running on the treadmill for half an hour, trying not to start
at my usual time of about an hour after three whole months without running. I got back and got a birthday card and check
from my grandmother. Then I hung out
with Hillary and Mardy. Hillary left
temporarily to take care of some business, during which time I made another
bracelet. Hillary got back and she,
Mardy, and I hung out, sharing a beer with them and going down to Break Time to
get some ice cream with them, during which time we agreed to walk together for
a bit of time every day, and I got some more Altoids.
The next day I went down to the
Ward Edwards building and got my laptop registered with the UCM wi-fi. Then I deleted several of my old e-mails and
sorted them a little bit. Afterwards I
went to help Hillary get her printer set up. Later I got two new prints, a print of Andy Warhol’s depiction of
Marilyn Monroe and a print of Johnny Deep from one of his films, both of these
individuals having been believed to be autistic. Then I got back and turned two of the now
empty printer cartridges from Hillary’s printer into paper weights one with a
Jesus drawing and the other of Muhammad Ali and started on one of Mother
Teresa. After that I went to dinner with my
hall where I almost think I spotted Jess checking me out. I got back and finished my paper weight
depicting Mother Teresa, and then did another one depicting Gandhi. After that I ran on the treadmill for forty
minutes. I got back and talked to
Dad. Then I got a call from Mom saying
my tuition had been paid. Afterwards I
went to the library and checked out Ralph Waldo Emerson’s Nature for my America Renaissance class, and some Lonely Planet
books on Kenya and Tanzania.
The next day I read a lot of Nature after my Anthropology of Food
class while drinking some coffee. After
my last class I went to the Union computer lab where I happened to run into
Maria, who said she saw my blogs and Facebook page during the summer and
thought they were very interesting. I
also learned she was living in East Ellis and was no longer working as a
CA. I sat next to her in the lab while I
took the syllabus quiz for my Creative Problem-Solving class and e-mailed a
list of textbooks I need to my dad. I
got back to Ellis where I had dinner with people from my hall. After dinner I made another bracelet. Then I worked more on making Facebook pages
for my blogs. After that I ran on the
treadmill for about an hour while I read more of Buddhist Boot Camp, which taught me about how power self-talk is,
like when I think I cannot change the world for autistics with Autism Speaks in
the way. I got back and started teaching
myself Arabic from the Rumi book I got. Then I went to Break Time where I got some more beers and Doritos.
The next morning, I ate breakfast
with Shay, Alex, and Anna, during which Anna asked me about the group and said
she was the new THRIVE student organization president and the organization
would call me about speaking to them about my group. I went to an appointment with Barbara
Mayfield, the Autism Spectrum Support Group advisor from the Office of
Accessibility Services. During the
meeting, we thought we would ask Tom, an Autism Spectrum Support Group member
and THRIVE student who was the only one to come to most of our meeting last
year, to be our vice president, especially as it may attract some THRIVE
students. I of course also made another
bracelet. The next day I had breakfast
with Anna and dinner with my hall. I
also finished reading Buddhist Boot Camp. After
that I went down to Hasting’s for the first time in a while and got the current
issue of Sufi magazine, Nobel: A Century of Prize Winners, a new
translation of The Art of War, and Tai Chi Classics. Then I went to Walgreen’s and got some
shampoo and a notebook for my Creative Problem-Solving class. After that I went to Crazy Dog’s and got a new
bottle cap for my collection from my drink.
The next morning, I had breakfast
with Jess and several other people from my hall and in Ellis. After that I went down to the sheltered
workshop, where I saw some hay barrels that I had never noticed before on my way, picking up several recyclables and repurposables along the way and
recycling all the recyclables I brought and found two new bottle caps for my
collection, and on my way back I picked up and recycled more recyclables and
found more repurposables. Then I
made another bracelet. I also had dinner
with people from my hall. After that I went to Crazy Dog’s where I got
two new bottle caps for my collection and realized twelve reasons why people at
UCM might not be coming to the Autism Spectrum Support Group meetings:
1. They
aren’t willing to admit they are autistic.
2. They’re
worried how other people will react or view them if they find out they’re at an
autism group.
3. They
don’t want others to know they’re autistic.
4. They
don’t like the idea of being in a group that is autism-based.
5. They’re
used to social rejection.
6. They’re
used to social isolation.
7. They
have some lack of social skills
8. They
don’t know anyone at the group.
9. They
don’t know anyone at school.
10. They
don’t have their parents for backup in this social situation.
11. Unlike
in community colleges, the people who might shun them for being in an autism
group are always living near them.
12. They’re
worried about how this group may portray autistics, having seen material from
various professionals and groups like Autism Speaks portraying autism as a
weakness.
13. They
are so embroiled in their special interests, and don’t want to leave them
behind.
After thinking of this, I
realized the solution may be to pair people up in twos several times instead of
one as we had done earlier at UCM, each time with different people, though I then remembered doing it with several people at JCCC. That way they could get to know people there
and make friends more easily and have another reason to come to the group and
meet people who share their interests. Later
I got a call from Hillary asking me for some help with her Composition I
homework, and she came up here and I helped her write the paper.
On Monday morning I read several
more pages of The Art of War. After that I went to the bank and got some
quarters. Then I found out where my
Cinematography class is. After that I
e-mailed my dad the name of the textbook I would need for my Cinematography
class. I also went down to the Union
bookstore and found out they were out of Selected
Works that I needed for my American Renaissance class. I got back to the dorm and went to the front
desk to get some envelopes and stamps, where I saw Anna and Brittany, but found
out they didn’t have envelopes, so I went down to the packing store to get a
stamp and an envelope. I got back and
worked on drawing the front of a Thank You note for my grandmother for her
birthday check, since I didn’t have an actual card to send. Then I drank some coffee while I read a lot
of the reading for my American Renaissance class, which gave me an appreciation
for nature writing myself.
Later I went to my
Cinematography class, where I learned about how in classic Cinematography,
shadows will be cast in darker scenes, and powerful people might be in the
center of the frame, while less powerful people might be to the left, and I
thought this class could really reawaken my appreciation for film. Our first assignment was to take two
photographs of an object, one from a normal angle, and one from a more unusual
angle, to show how angles influenced the mood of the picture. After I got back and ate dinner, I tried
frantically to get onto the Autistic Self-Advocacy Network-KC’s Google Hangout
for the meeting, but after trying for over half an hour to get on, Hillary got
Josh and he tried to help me get on for almost twenty minutes until we found
out I hadn’t gotten the invitation to the meeting by mistake. After that I ran on the treadmill to try and
relax, while reading more of The Art of
War. I got back and talked to Tyler
after he called until I insisted that I was exhausted and stressed, and I needed
to go. I got back and helped Hillary
with her Composition I homework. After
that I made another bracelet. Then I got
several of my textbooks in the mail, along with a birthday card from my Uncle
John, Aunt Nini, and cousins Scott and Tim.
The
next day I ran into my old friend Antwon from last year as I was heading to
class, and we caught up a bit and I got his number and planned to text him
mine and see him later. I read more of
my Creative Problem-Solving book and realized a lot of the strategies for
businesses it mentioned paralleled The
Art of War’s philosophy. After my
last class I got back and finished my thank you note for my grandmother. Then I went to dinner with my hall and Chic
Filet, where Josh assured me the difficulties I was experiencing over the
conference would be resolved. After that
I got some more beers (or rather hard cider) at one of the gas stations. I got back and heard back from Teigan and we
got it so I was able to help out at the JCCC Autism Across the Life Span
Conference. I also made another
bracelet. As I was walking to the Rec
Center I ran into Sara holding a dog on a leash standing next to a short stocky
man in a bright red shirt. She smiled
and said, “Hey, Ben. How are you?”
“Good,
how are you?”
“Good,
just walking my dog,” she said breathing heavily.
“That’s
good,” I said. “Well, I’ll see you
around.”
“Bye,” she said smiling.
I
saw her again as I was going down the stairwell to Late Night, she was walking
up. I said hello and she said, “Hey,
Ben. What are you doing?”
“Just
going down to Late Night.”
“That’s
cool. Just relaxing?”
“Yeah.”
“That’s
good. Well, have a good night.”
The
next day I met with Barbara Mayfield, the Autism Spectrum Support Group advisor
from UCM’s Office of Accessibility Services about the group. I told her my theories on why people weren’t
showing up to the group, and she agreed I could be right about them. During that time, we came up with the idea to
plan activities for after our pair-up sessions, get together THRIVE students
for activities to help get them into the group, and to meet with the THRIVE
staff to help that happen and to get THRIVE students involved. I said sure, and he told me they would
probably get together to practice sometime soon. I went to the Lovinger computer lab and
worked on putting a presentation together for Disability Awareness Week, when I
got a call from the bookstore saying they had the textbook I needed, and I could
come down and get it. I went down there
and got it and a fine-tipped sharpie and my arabesque origami box. Then I went down to the packing store, where
I ended up getting eight new stamps for my collection along with two
envelopes. As I left the Union, I ended
up going back to walk with Hillary and Mardy to the bank. I got back and mailed my letter to my
grandmother. Then I finished my
arabesque box. After that I went to
dinner with my hall, sitting next to Jess there, and got the idea to make
another bottle cap sign that says “Wake up,” and to carve some of my wooden
blocks into a box (for myself). I then
made another bracelet for the Silent Auction. After that I talked to my granddad.
After
my first class the next day I went to the library and checked out an edition of
Walden. I got to the cafeteria and read a lot of
it. Later Mardy and I agreed to ride
home the next day together for Labor Day weekend. I went down to Late Night again that night
trying to relax and ran into Sara and her friend Cameron.
“Hey,
Ben, how are you doing?” Sara asked me.
“I’m
good, and you?”
“Oh,
I’m doing pretty good,” she said sighing and nodding her head.
“That’s
good, and how are you?” I said to Cameron.
“I’m
good,” she said.
“Well, I’ll see you later, Ben,” said Sara.
The
next day Mardy and I drove home together. I got home and turned several straws into beads. Then I decided to turn all my straws from now
on into lampshades and started doing it. Afterwards I read a little bit of my Lonely Planet Germany book while I
petted Peter. Then my mom, Dave, and I went
to Elsa’s and celebrated my birthday where I told them about school and looking
for the right girl, and she said if I keep my mind open to all possibilities,
something will happen. When we got back, I made another bracelet while waiting for everyone to be ready to celebrate my
birthday dinner. We celebrated it with
triple layered chocolate caramel cake with vanilla and caramel cone ice cream
while I got four new shirts, including a Mount Washington shirt and a salmon
Winnipesauke shirt, as well as a book called The Uprooted: The Epic Stories of Great Migrations that Made the
American People.
Labels:
Antwon,
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Seven Days of Summer
The day after I got back from Colorado, I scooped up
Peter’s litter box before eating dinner with my dad and Cam. I showed them the bracelet I made, and they
both said they should sell really well.
When I got back, I worked on my bottle cap snake before going down to
Starbuck’s, as I had so much this summer. I made another bracelet when I got home, making it my resolution to make
one bracelet a day before the silent auction. I told my granddad about the bracelets, and he too said they should sell
really well.
The
next day I went to Starbuck’s and read more of Water Touching Stone. After
that I found out Build-a-Bear Workshop ended their partnership with Autism
Speaks. Then I made another autism
awareness leather bracelet. My dad met us
to take us to the lake and I gave him the belt I made in Colorado for Father’s
Day. We got to the lake house and then
went to the market and got some beers, from which I got three new bottle caps
to repurpose. We met my grandparents, and
they liked my belt, snake, and bracelets, and Cam said he had some bottle caps
for me. Then I worked on my letter to
Alpha Xi Delta asking them to end their partnership with Autism Speaks
too.
My granddad
suggested that they could be sold for ten dollars apiece, which my dad agreed
with. My granddad and I also agreed to go
to a labyrinth on Thursday with my grandmom in place of the Pathless Land on
Wednesday, as well as Winstead’s and then Barnes and Noble. Then we went to the Canoe Club. I got back and found the bottle caps Cam had
for me, as well as two new Snapple caps for my collection. Then I worked on my bottle cap snake. After that, I drove Cam around the block so
he could show me how his car worked, as I had not driven it before.
The
next day I went to my art class where I was fairly satisfied with my progress
on Mom and Dave’s painting of Leadville, and Donna asked me to e-mail her to
keep in touch. I went into the village
and saw Nick from my old high school who I learned is taking CLEAR classes at
JCCC and has a girlfriend, and we exchanged numbers. Then I went to Starbuck’s, where I got an
idea for how to stitch my Kool Aid pouch wallet together and read more of Water
Touching Stone. I got back and spent the
rest of the day stitching my wallet together, taking a break to make another
bracelet.
I
continued stitching it together until nearly two in the morning. After meditating, eating, and showering, I
finished stitching my wallet in the next seven hours. Afterwards I made two more coasters from receipts
for the silent auction. Then I went down
to Starbuck’s and read more of Water Touching Stone. I got back and talked to my granddad who
suggested I pick out $50 worth of things from Barnes and Noble, and I got the
idea while talking to him to make a coffee sleeve from old t-shit scraps
tonight to see how much I could make when I’m away at school. I also made another bracelet.
The
next day I made another bracelet, as was my pledge, and later got a new bottle
cap for my collection from my drink I got at Better Cheddar. Soon after that I went to see a glass
labyrinth at the Nelson Atkins Museum of Art. My grandmom was sick that day, and unable to make it. We walked through the Nelson, and then got
outside and found the labyrinth. As I
walked through it, it felt so uplifting and mesmerizing, and I came out feeling
almost completely different than before. My granddad was amazed that I didn’t run into walls as he and my
grandmom had before. Later we went to
Winstead’s, and then to Barnes and Noble, where he gave me fifty dollars to get
anything I wanted there. As I was going
in, I got a call from Tyler and told him I would have to call him back later as
I was celebrating my birthday. I ended
up getting a book called Rumi: 53 Secrets
from the Tavern of Love and a CD by Nigerian artist/revolutionary Fela Kuti called Fela: The Best of the Black President 2. Afterwards I felt incredibly tired.
“It’s
partially from working on my letter to Alpha Xi Delta,” I said.
“Well,
you poured your heart out,” said my granddad.
“When
I get home,” I said. “I’m just gonna
rest.”
“What
about calling Tyler?” my granddad asked.
Sure
enough I called Tyler when I got home before getting some rest that I very much
needed. The next day I went to my art
class for one last time for a while before going to Starbuck’s and reading more
of Water Touching Stone. I also got another new bottle cap I got from
a drink I bought at Better Cheddar. Again, I made another bracelet. The next day went very much the same, getting two new bottle caps,
making a bracelet, going to Starbuck’s and reading Water Touching Stone. So did
the next day except that day I had dinner with my dad at Minsky’s before going
down to Better Cheddar again, and then finding a new bottle cap near the glass
recycling bin in Prairie Village. Then I
got home and packed up my stuff for the next day.
Sunday, August 31, 2014
Autistic Advocacy and Relaxation: Our Second Vacation in Colorado
On the first day of August, I
finished packing my clothes before we drove off to Colorado. As we drove there, I worked on my letter to
Alpha Xi Delta about their support of Autism Speaks, then my travel plans to
Kyrgyzstan and Tajikistan, and then my letter some more. I realized as I read my Lonely Planet books
on the region about how these port cities in western India were probably how
Buddhism spread to Sri Lanka and Southeast Asia, just as the Silk Road allowed
Buddhism to spread to China, and at one point, the Mauryan Empire must have
been the center of a global Buddhist community. I drove on the highway for about an hour we munched on McDonald’s. Then I worked on my letter, then my Art of
War for the Autistic Advocate, and then my letter some more. We went to Whole Food’s where I helped with
the shopping before we ate dinner from their salad bar, from which I had some
delicious jerk chicken, and got a new bottle cap for my collection. Then we drove on while I continued working on
my letter, until we finally arrived at our cabin.
Soon after I got up the next day
I trimmed and sprayed the dandelions and grass growing between the planks on
our front porch. Then Dave and I went to
Safeway where I found several bottle caps to use for my snake and other
projects, got a new bottle cap from my drink there, and found a new bottle cap
for my collection in the front of Safeway, that is if I can get it back into
the shape it was in before. I got back
and messaged Teigan about the JCCC Autism Across the Life Span Conference,
asking her if the Autistic Self-Advocacy Network of Kansas City would like to
participate in it. I also did a few more
changes to my letter to Alpha Xi Delta.
We went to the Boon Festival in
Leadville where I enjoyed a delicious meal of hot wings and chips, while I
heard Teigan respond that they would love to participate though they will need
as much information about it as possible. Dave and I then went to a bar where we tried shots of whisky and Cowboy
Coffee. We bought some kettle corn and
then went to see Paula Poundstone perform in the Tabor Opera House. On the way back we saw a deer. After that I got back and added some of the
finishing touches to my letter. Then I
made another coaster from receipts, while I thought about Autism Speaks
stranglehold over the conversation on autism, but then remembered Winston
Churchill’s quote, “When you think you are going through hell, keep going.”
The next day cut and sprayed
some dandelions for my mom and Dave. Then
we went to the Boon Festival where I enjoyed a brisket sandwich and chips and
then bought a Peruvian flute and shaker at one stand and a hand drum at
another and picked up and recycled several recyclables. I got back and made several flowers and beads
from straws I found on the ground. Then
I practiced my flute for half an hour and sort of invented a new slightly
different fingering notation that worked better for me.
I made three more coasters from
receipts and during dinner, the subject of Autism Speaks came up between my mom
and I and to my intense relief, she said she agreed with what I thought of
them, though she said she thought I ought to get my message across in a way
that wasn’t angry, which was fair enough. I also told her about my letter to Alpha Xi Delta and she said she
thought I should do that. I then
finished two more coasters. I realized I
must have been quite helpful to the autistic struggle by getting all these
autistic people together at JCCC; a lot of good can come about when autistic
people get together; look at the Silicon Valley. I also realized that it was probably people
with disabilities who first conceived the idea that racism and other sorts of
inequality stem from our society's intolerance of difference, thus helping to
quash racism, and helping our society to pay it forward with ethnic minorities,
proving that disabled people are not simply economic burdens or charity cases
as some think they are. The next day I
communicated a message from Sean about the JCCC Autism Conference to
Teigan. Afterwards I made three more
receipt coasters and started on five more.
The next morning, I had a dream
that I saw the citadel of Minas Tirith, only it looked much different in my
dream than it did in real life, but I realized that. After that I wrote in my dream journal,
during which time I realized that in my dreams, I’ve realized things are
different than they are in reality. Then
I delivered a message from Teigan to Sean. Later I started on eight more receipt coasters. I went into town and bought six more Native
American postcards and a crotchet needle. I got back and finished two more receipt coasters. The next morning, I combined several receipt
coasters into two more coasters afterwards. Then I sprayed some dandelions for Mom. After that I helped plant some grass.
After that I took a walk along
the tracks where I took several more photos and was inspired to do more
photography. I got back and worked on my
letter to Alpha Xi Delta. Later I went into
town and got a fish fossil to frame and hang on a wall at a mineral store and a
crossword puzzle book at the bookstore. Then I went to a coffee shop and got a two-scooped cone of dark
chocolate chip ice cream and an Orangina, from which I got a new non-crown
bottle cap for my collection and ate and drank them while I worked on my
crossword puzzle book. After that I went
to the antique store and bought two more Native American postcards. Then I went to another coffee shop and had a
lemon crumb bar while I did some more work on my crossword puzzle book. After that my mom, Dave, and I ate at the Grill
where I got my mom to agree to send my pocketknife home in the mail. Soon after we got home, Dave’s mother and
sister Brenda arrived at our cabin. The
five of us went on a train ride the next day up the mountains where we were
given a guided tour of the area. I got
several pictures on my way back, and before we went home, we went to the taco
truck, where again, I got a new bottle cap from my drink. Later I sanded the back door frame for my mom
and collected some firewood, before walking down the tracks and going to the
old warehouse and collecting some green, red, and gold leather, which looked
almost red, yellow, and blue, to make braided leather autism awareness
bracelets for the silent auction. I made
one for myself and soon afterwards ate dinner with my mom, Dave, Brenda, and
Mrs. Dingley. I told them all about my
coasters and what they were for, and Mrs. Dingley suggested making a video
showing how to make them, so people would be more likely to pay the price for
them after seeing all the hard work involved in them. I also enjoyed talking to Brenda, who was a
major travel enthusiast herself, about my own travel plans to places such as
Tibet, Turkey, and Central Asia, and was amazed at how much she knew about the
regions herself.
The
next day, my mom took me to the shuttle car that would be my first ride on the
way to the airport, giving me a bag that had a present for my upcoming
birthday. My grandparents would pick me
up at the airport and bring me back home. I got on the shuttle car that led to the next one, tipping the driver
and getting on the next ride. I tipped
the next driver after I got to the airport and tipped the driver again, before
getting through security and soon learned my flight would be half an hour
late. I called my grandparents to let
them know. Soon afterwards, my flight
boarded, and I made it to Kansas City, and was picked up by my
grandparents. They took me to get a meal
a Winstead’s through the drive-through, and then I made it home and made
another leather bracelet. I called work
to ask them when I worked next. They
said I didn’t have any hours that week, but I figured that was ok, because in
the next week, I would be going back to UCM.
The Working Man and the Autistic Porcupine Movement
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.
“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," he said.
“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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