After a hardy weekend of blogging, I did some more
crocheting on one of my belts. After
that I took a walk down to a gas station clear my head before I needed to do it
at night. Then I did a little bit
of the reading for my Cinematography class, though I used the pictures in the
book to help guide me a little bit. After that I took a walk down to Break Time and got some Flaming Hot
Cheetos’s.
I
went to my Cinematography class where I got a ten out of ten on the quiz, and
it helped rekindle my passion a little bit for filmmaking. Afterwards I went down to Crazy Dog’s and
enjoyed some boneless honey barbecue chicken wings, and got a canned coke
instead of a beer, cutting down on the glass consumption to take to the
recycling center, while still not consuming non-recyclable products. I got back
and saw Sara, Kameron, and Beth as they were about to go down to Late Night and
joined them, at the same table that April and Morgan were sitting at, shortly
joined by Drake, and Sara and Beth later went back to the grill to get some
more food, before which Sara asked if I wanted anything. After deciding to go up to see what else was
being served, I stood in line with Sara and Beth, enjoying their company. Sara, Beth, and Kameron soon finished eating,
and Sara asked if I was ready to go back, and I went back up with them, during
which time she held the door to the third floor open for me. Soon after that I read more of The Divine Madman. The next morning, I enjoyed a breakfast of
donuts and bacon. Then I read a lot of
the reading for my American Renaissance class, reading two chapters (which are
all very short) at a time, and focusing only on other things after I’ve done
them. After that I went to that class where I
took part in the discussion and found out I got a B on the first draft of my
article summary.
After
class I made an appointment with Krisana West for the 25th, the
earliest time she had available. I got
back and worked on another wind chime made from bottle caps. Then I called Hen House, talked to Rick, and
told him I was available to start working on the 23rd. After that I went to dinner where I wrote another
haiku. Afterwards I played Candy Rain
for a bit. After that I made some more
plarn while running on the treadmill. Then I got back and ate at Late Night with April, Morgan, and Drake,
while I saw on my Facebook messages a message from Marshall Edwards from ASAN-KC
saying he thought they might be able to do something for National Philanthropy
Day and asked if I could write a post for their Facebook page. I responded saying of course. Later I played Candy Rain some more and saw
Sara at the same time. I also realized I
was going to need to reschedule my appointment with Krisana if I’m going to
start working by the 23rd.
The
next morning, I worked on one of my belts made from plarn. Then I went to the Office of Academic
Advising and rescheduled my appointment with Krisana for 8:30 on December 2nd. I got back and worked on an article for
ASAN-KC for National Philanthropy Day, while I saw Sara pass through the lounge, and we said hello. After I finished the
article, I sent it to Marshall, and he said he and Spencer would take a look at
it. Then I worked on my belt some
more. After that I finished reading all
of yesterday’s reading for my American Renaissance class, again seeing Sara
pass through the lounge going from her room to her car on her way to a friend’s
house, and then back to get her cell-phone charger. Then I read a lot of the reading for my
Anthropology of Food class while running on the treadmill. I got back and went to Late Night where I saw
April and Morgan leaving. Soon
afterwards I read a lot more of the reading for my Anthropology of Food
class. After that I took a walk to
the Union outside where I danced with Hook, on my way realizing that maybe the
walk to the Union, much like the journey to the sites in Tibet, Nepal, and
Bhutan for Buddhist pilgrims in northern India is what the pilgrimage is about,
and just as the journey that led me to that part of the Union the night, I
danced there has been an incredible journey. On my way back I thought longingly of flaming hot Cheetos's realizing
that maybe foods do have temperatures like the Greek philosopher Galen had
said. Over time, my passion against
Autism Speaks was growing stronger and stronger, and I thought Maybe it was
time to get Alpha Xi Delta’s attention on the issue by creating a volley of
one-star reviews on their page for their support of AS, until their average
drops so much that we get their attention, and I should be the one to start it. Feeling too tired to write anything though, I
simply gave them a one-star review for the time. The next day after my classes got out, I
decided it was time to do it, but I was scared, remembering stories of fellow
autistics protesting Autism Speaks who faced threats, harassment, and even
violence for their beliefs, but as I got on Facebook, I saw a post that Desiree
had shared showing World War II soldiers on D-Day with a quote saying, “Courage
does not mean you are not afraid. It
means you do it anyway.”
My
heart racing, I went on AZD’s page where I saw a post of a poster of a very
attractive blonde girl, Jackie Boyland of the sorority saying, “I can’t imagine
what it’s like to hear your child has autism. Now you know your life is changed forever. It happens every twenty minutes. In a split second, tomorrow will never be the
same.”
That
was it. I went to my review and I wrote:
I am a twenty-five year old man, have a job, and
can speak perfectly, yet according to Alpha Xi Delta, I am a speechless six
year old who is consistently having tantrums.
That is their basic overall impression of Autistic (yes, I say autistic
because I’m not ashamed) like me. You
won’t hear anything about Jerry Seinfeld or Daryl Hannah who have all claimed
to be autistic. You never see any other
type of information from them or their partner Autism Speaks. I believe that to believe their organizations
message of curing autism, you have to believe one of two things: either that
autism prevents one from living a happy, fulfilling life; or that it somehow
makes your personhood less than that of non-autistic people. I along with other autistic activists like Lydia
Brown, Amy Sequenzia, Temple Grandin and so on, show that is not true. Some of us can’t speak or live up to
conventional markers of success, but we can contribute far more than AXiD or AS
gives us credit for. None of AXiD’s
money that it has raised has helped autistics live fully independent lives with
their current condition as I am able to do now, but support eugenic research on
autism akin to what has happened to Down syndrome for so many years. Look it up on Autism Speaks tax returns on
their own website. Autism Speaks and
their partners have done this by using material that portrays autism to be the
equivalent of a car wreck or being struck by lightning. We deserve better than that. And all the while, AS includes no autistic
people in its board or governing decisions in becoming the most trusted name in
autism politics. AXiD will not give you
information or services geared towards helping autism, only demonizing stigma
and propaganda. They probably just
looked for the first thing they found when they looked up autism to be their
philanthropy so they could have a charity to be recognized without having to
put in any effort, as there are so many other organizations with less harmful
spending, membership, and informational qualities, such as the Autistic
Self-Advocacy Network, the Autism Women’s Network, the Autism Society of
America, and the Global and Regional Asperger Syndrome Partnership. In short, AXiD does the bare minimum in
trying to help the autism world. You
won’t find any information, material, or services here: just stigmatizing,
infantilizing, rhetorical propaganda. I
give this organization one star because I can’t give it zero.
Suddenly
my heart was racing. I was ready for all
the hate mail and threats from AZD members. I was just glad they didn’t exist at UCM, or I would have been afraid to
go out at night alone for fear of being assaulted. I thought though, that if I was the first to
do it, other autistics who may want to speak up against AZD’s support of Autism
Speaks might be able to do it to. I got
back to my dorm, and called my granddad, telling him what I did. He said it was good I finally did that. I told him about Jackie Boyland’s quote, and
he thought it was laughable, and he agreed that Sandy Edwards, AZD national president,
is probably just a young twenty year old who doesn’t know how to lead a group,
so rather than deal with criticism, she censors everyone in her sorority who
doesn’t agree with her. He had told me
that his dad always said the problem with fraternities and sororities is that
they are run by nineteen year olds, and he experienced that problem when he was
in his old college fraternity. I did
agree to send him a copy of my review and my Scream through e-mail.
I
spent most of the rest of the afternoon drawing, completing my picture of the
Autistic Scream. Then I went out into
the lounge and worked on some more drawings, including two from The Tales of Aragorn and Arwen from the
appendices of The Lord of the Rings
of Aragorn as a ranger before the events of The
Lord of the Rings, while I sat out there with Josiah, Josh, and Katie. Katie saw me drawing and asked to see some of
my work. I handed me sketchbook to her,
still unready to show the Autistic Scream to just anyone yet, but as she
flipped through the pages, they all saw the picture and thought it was just The Scream, not noticing the unique
cultural nuances to it, for which I was grateful. I liked and trusted the three of them very
much but knew few of the world outside the autistic community knew about the
controversy of Autism Speaks and did not feel able to explain it to them. They did see all my drawings though and were
very impressed with my work.
I
called my dad that night, and told him about what I did today, and he
understood why I was nervous. He laughed
when I told him the quote by the blonde AZD girl, and thought, like my granddad,
that perhaps these young girls did not have the leadership skills to deal with
criticism of AS within their organization and agreed that AZD’s support of AS
was different from that of Home Depot or Dollar General because these girls
would not be part of AZD for their whole lives. I did feel some comfort knowing that AZD’s post of that blonde girl’s
quote had only gotten two likes, and their posts about AS in general got less
than forty likes, so perhaps moral for AS was low in AZD. Still, it was with great anxiety that I went
on Facebook on my phone, but saw to my relief, that I had not yet gotten any
“hate mail” from angry AZD members.
The next day after meditation
and prayers, I finished working on The
Scream, closing my sketchbook right before Jacob came and joined me at my
table, who I was glad to see. While I
showered, I got a call on my cell-phone, and when I got out, I saw it was from
an unknown number in San Francisco and decided not to return the call. Then I worked on writing down lists of words
for autism-themed crossword puzzles and word searches and got the idea to make
an Autistic Mahjongg set, and I got the idea we could give these word searches
and crossword puzzles to people who might potentially join the group to get
them to rethink embracing their condition while I saw Sara walk by, leaving to
go home. Afterwards, inspired by Timber
Hawk’s (author of Buddhist Boot Camp)
advice to express gratitude on Facebook, I wrote a post on Facebook in the
spirit of Thanksgiving saying what I was grateful for in the world of autism,
trying to feel better about the situation of the autistic community as it was
just then, and it went:
Autism post in the spirit of the
holiday-three things I am grateful for: I am grateful to have a wonderful
Autistic Self-Advocacy Network chapter in my hometown of Greater Kansas City,
whose members are so kind to me and supportive, and whose meetings I can attend
on-line while I am away at school at Central Missouri. I am grateful for my
enormous help and support being given, at home and at school, for starting a
student organization and social network for autistic students called the
Autistic Student and Peer Organization. I know because of these groups that
far-reaching grassroots impact is possible when you have people committed to
doing the job. I am grateful for my abilities I have been given and the support
in starting my two autism blogs, Ben's Blog and The Autistic Dharma. The
support I have received from my friends, family, and colleagues lets me know
that a group of people, no matter how small, unknown, or unheard of, can make a
lasting impact in the world that can affect us for the rest of our lives. Happy
Thanksgiving, everybody.
That afternoon, I
went down to the Union bookstore and got some more mechanical pencils. Then I went down to Crazy Dog’s enjoying some
honey barbecue wings as a reward for my standing up to Alpha Xi Delta. I got back and did another food journal entry
for my Anthropology of Food class. I
also saw eight people, including Alexandra, Mckinsey, Ari Ne’eman president of
ASAN national, and my dad like the post. Then I wrote down some more poems. After that I made another coaster from receipts. I also talked to my granddad, and he said he
and my grandmom were both very impressed with my Facebook post, thinking it was
a nice refresher from a world where people are always complaining. After running and talking to my dad, I hung
my wind chime up. After that I took a
walk down to Break Time and got another Snapple cap from my drink.
The next morning, I saw my post
that I had written for National Philanthropy Day on ASAN-KC’s Facebook page,
just as I had written it, going:
National Philanthropy Day-Why the Autistic Self-Advocacy
Network Matters on it
National Philanthropy Day is a
day set aside on November 15 every year, signed into law in 1986 by President
Ronald Reagan, to “recognize the great contributions of philanthropy—and those
people active in the philanthropic community—to the enrichment of our world,”
according to the Association of Fundraising Professionals. In this respect, the Autistic Self-Advocacy
Network, a 501(c)(3) non-profit organization run by and for autistic people,
especially should be recognized among the most well-known faces of the autism
community today by people celebrating NPD.
Our organization, founded in 2006 by two college students, Ari Ne’eman
and Scott Robertson, is a response to social inequities among autistics,
including restraint and seclusion in public schools, underrepresentation in
employment and higher education, abuse by police forces, and discrimination in
receiving medical treatments, including life-saving operations due to the
belief that disabled lessare less of a priority than the non-disabled. Some of our contributions include the ASAN
Toolkit for Advocates on Ending Discrimination in Organ Transplantation, the
ASAN Toolkit for Advocates on Health Care and Transitioning into Adulthood, and
the ASAN Toolkit on Improving Home and Community-Based Services, which can all
be found on their website autisticadvocacy.org.
On that note, ASAN shows great initiative to provide concrete,
discernable differences for autistic individuals compared to many larger, more
publicized autism organizations. I
believe it particularly deserves recognition among the autism community.
ASAN’s selflessness in utilizing
their resources for communities and families is evident because all of our
executives are volunteers, with exception of President Ne’eman, who earns
$65,000 a year in Washington D.C., running ASAN as a full-time job. Meanwhile, ASAN played a major role in the
Autism Collaboration, Accountability, Research, Education, and Support (CARES)
Act of 2014. Originally the Combat
Autism Act, ASAN and their collaborators, such the Global and Regional Asperger
Syndrome Partnership, prompted the name change, believing the term “combat
autism” was too stigmatizing. We have
also encouraged legislators to push for more autistic representation in the
bill’s research and more funding for autism services (originally only 2.4% for
children and 1.5% for adults). Clearly
ASAN has been a real asset to address the future prospects for autistic
individuals that concern their families and loved ones.
As an active member of ASAN’s
Kansas City chapter, I feel my opinions and ideas about issues that affect me
the most are not discounted because I am autistic. Autistics, parent, ally, and professional of
autistic individuals are all allowed to take part in the meetings of ASAN
regardless of whether they are verbal, use a type-pad, or any other form of
communication. Autistics, like me, know
I that at our meetings I can be openly and unapologetically autistic, which I
rarely feel anywhere else. It is a
breath of fresh air and a truly liberating experience. Here, people recognize my individual worth,
dignity, and rights without the need for labels like “high-functioning” or
“low-functioning,” which is what philanthropy is about. Today let’s be true to its spirit and
recognize the desire to improve other’s well-beings.
Joy spread throughout my
body. Quickly, I put in the comment
section, “Thank you, everyone for your support. Teigan commented back saying, “Well written.” I shared it on my Facebook page, and soon
Barbara shared it on her page, saying, “UCM’s very own Ben Edwards.” My mom also commented on my post saying,
“Wonderful, Ben. As always, I’m proud of
you and your activism.”
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| Aragorn in the land of Harad, in the far south of Middle Earth |
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| Aragron in Moria |
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