“I mean,” I said. “I think I can find a way to get into Disability Studies.”
Wednesday, August 26, 2015
My mom and I were back in Kansas City after a week of being in Colorado. The day after we got back, we took my phone to Verizon Wireless, where we were able to get me into a new phone using my UCM e-mail account. However, I was not able to figure out the e-mail address and password to get into my old account.
The next day I went to Starbuck’s again, and later I went to the hardware store and got some more hot glue. After that I got back and made my cross of reclaimed wood. I then finished my bottle cap snake that I had started on some time ago. Then I finished another coaster made from receipts. The next day I went to my appointment with Dr. Mays before getting my flu shot. Later I deposited my tuition check, and got my prescription from Dr. Mays in the mail.
After that I called work and found out I’m off all this week. Then I made fourteen more bracelets from old glow bracelets and strips of snack wrappers. After that I went down to Better Cheddar where I got a new bottle cap from my drink. Then I went to Starbuck’s where I got the idea to make an autistic mandala. Then I made my mandala. I also had a dinner of cheese, crackers, garlic cloves, spicy hummus, moose spread, and spicy hummus with Mom. I also talked to my dad, and he liked the mandala that I showed him in a picture. After that I called Jack. I also worked on another snake made from bottle caps.
I worked on my snake. I also did some laundry and had a peppered chicken sandwich on a sandwich roll with some spicy hummus. Then I went to Bruce Smith and got the Goosebumps book Welcome to Dead House. After that I went down to Starbuck’s where I got the idea to make Buddhist monk sculptures from pine cones and learned about a new Lord of the Rings fan film called The Two Hunters, though lotr.wikia.com said it might not ever be completed. I decided to order some on-line. I also worked on some more receipts coaster and bottle cap snake. I also talked to Tyler.
The next day I went to Starbuck’s again. I also went to eat with Dad at Minsky’s, where he brought up the subject of what I would do with my career after UCM.“Well,” I said. “I would like to do things for the autistic community.”
“Well, have you thought of getting a degree in Social Work? They do have a program at Columbia and UMKC.”
“Well, I’d really like to go into Disability Studies.”
“Oh, I don’t know anything about that.”
I got back and talked to my Granddad, telling him about the conversation with my dad.
“I mean,” I said. “I think I can find a way to get into Disability Studies.”
“I mean,” I said. “I think I can find a way to get into Disability Studies.”
“Uh-hu.” he said in a non-committal tone.
“I mean maybe you should talk to someone about this. I don’t know anything about this.”
“Well what, do you think I can’t do anything for the autistic community with my career without a social work degree.”
“No I just said maybe you should talk to someone who knows more about it than I do.”
The next day picked up Tyler and ate lunch in Lawrence. Then we went to visit the Topeka Capitol Building. We got back and had dinner. Then we spent a lot of time watching Mighty Morphin’ Power Rangers. During that time, Jack called and said he would be able to get together the next day.
I took some time to saw the edges of the boards I brought back from Colorado for my bottle cap signs. Afterwards I went back to Verizon and got my mom and I new chargers. I got back and started getting all my stuff to go to UCM together. After that I went down to Starbuck’s.
I got back and talked to Granddad, saying to him what I had wanted to say for two days, “Look, I’ve started two groups, two blogs, spoke at a camp and a school for autistic children, and went on Chris Hernandez’s show about autistic adults. I think I can do something even without a social work degree to really help the autistic community with my career!”
“Well, I do too.” he said.
“Yes. I think you’re going to do wonderful things.”
“Well thank you. I’m sorry. I was wrong to get so short with you.”
“Oh, it’s no problem. You were just stressed out.”
I drove over to Jack’s place and he was happy to let me take pictures of his art to share with Artists and Autism. Then we went down to Salsa Grill where I told him about The Friend of Autism Pledge and what it was for, and he agreed to have a look at it when we got back. Once we did, he read over it, thought it was a great idea, and that he would be happy for me to add his name to the list. After that we watched The Sandlot, which I actually enjoyed pretty well.
When I got back I reposted The Friend of Autism Pledge on Facebook. I got back and paid my student tuition. Then I filled out my voting ballet. After that I washed my coat and other laundry. Then Dad got here and delivered my textbooks, a head massager, and several bottle caps, from which I got two new ones from my collection. Then I packed up my stuff for UCM. I went down to Minsky’s and treated myself to some buffalo wings. Then I went to Hen House and had some donuts. Mom paid me for the dinner I got myself, and then I shared one of Jack’s paintings on Artists and Autism.
The next day I cuddled with Peter some more while learning about the different species of mammals in Africa. Then I packed up my stuff all the way and loaded it into Mom’s car. I drove down to UCM, feeling perfectly relaxed about driving on the highway. I got to UCM and unpacked. I also learned that I have a new roommate named Jeremy. I met Jeremy, his parents, and his girlfriend, Lisa, who I learned was a child development major and a song leader.
“What is that?” I asked.
“I lead songs for my sorority.”
“Oh, what sorority is that?”
“We’re cool.” she said.
Soon after that I restored my CD mandala some more. Then I went to Crazy Dog’s where I got a new bottle cap for my collection from my drink and enjoyed The Simpson’s, albeit only with subtitles. I got back and ran on the treadmill for about an hour, though having forgotten my headphones, and learned more about mammals in South Africa. Then I got back and got to know Jeremy, including that he is a junior pre-med transfer student from a community college in St. Charles and goes home once a month to work with the Marines, which he is in. Then I talked to Erin, who reminded me that it is up to me whether I continue with my schooling after college.
Sunday, June 21, 2015
The morning before we went to Colorado, I couldn’t sleep, so I took some time to go through some old stuff of mine and worked on uncluttering my room, putting my pebbles, old news clippings from others, photos, paper clips, Lego instructions, Legos, and condoms together, and recycling old bits of paper. Then I scooped Peter’s litter box. After that we drove down to Colorado. I also started reading The Tao of Leadership. We went to Whole Food’s and I got a new non-crown bottle cap from a drink I got there. Finally we got to Colorado and heard Jamie, Graham, and Nick were staying in Denver that night.
The next day as I went into town with my mom, with the toilet still not working yet, it occurred to me that poverty cannot be the sole reason for lack of plumbing in the Third World, but perhaps lack of experienced engineers and tax payers to pay for and dig sewage systems. Indeed it seems that while we in the West may send them so many doctors and teachers, they have so few in their own countries, and the way we practice medicine and schooling in the U.S. may need to be adapted to fit the cultures of the Third World. Mom and I then shred a Bhakti Chai while I nibbled on a chocolate blueberry scone and a chocolate chip cookie. Then I went into Minerals and bought myself several different fossils, a leather sack, and a worry stone for Mom. Then I went to Fire on the Mountain and bought myself a crochet needle. Then I went to Weston Hardware and bought myself five new Native American post cards. Mom came and met me there and I gave her the worry stone, for which she thanked me, and she bought me a salted caramel.
When we got back we found out our toilets were working again. I also organized all the recyclables in my duffle bag into bags from all my times shopping at Weston Hardware. After a dinner of shrimp scampy (for me just the shrimp) I read (or reread) more of The Silmarillion. Then I found out, after talking with Verizon about my phone, which had me locked out and was frozen, that my phone was broken, and I needed a new phone, luckily covered by the warranty, which they could transfer all my contacts and photos onto. I also thought back to how I realized why our attempts to build infrastructure in the Third World don’t go so well, and saw that social sciences are not useless on par with math and science like people think.
The next morning I read more of The Silmarillion. Then I gathered some wood to make a reclaimed cross. After that I went into town and got some chocolate peanut butter cake from the coffee shop, four blood red buttons for my snake from Fire on the Mountain, a jigsaw puzzle from the book store, and some chuckles from Weston Hardware. Shortly after that Mom, Dave, Graham, and I went to the Grill and I had some delicious tacos. I got back and read more of The Silmarillion. The next morning I read more of The Silmarillion. After that I completed my jigsaw puzzle. Then I did some puzzles on-line. Later I read more of The Silmarillion. The next day I found some more wood for making bottle cap signs. It turned out that we would be leaving Colorado on the second of January rather than the first, because my mom was having severe headaches and needed to get home to get them treated.
After we dropped off Dave we listened to Comedy Central Radio to pass the time. After that I drove on the highway for about an hour. My mom and I then switched, and after that I drove for another hour. After that we switched and continued to listen to Comedy Central Radio some more, while I realized that Legolas may have been the way he was portrayed in The Hobbit movies (with the exception of Tauriel, as she was only added to put in a female character) because if he had been in Thranduil’s army during the siege of Erebor by the elves, he might have been a prominent soldier who Gloin would have recognized and told Gimli about, and they would have both treated Legolas with hostility at the Council of Elrond, and Legolas’s mother may have been dead because when Thorin was interrogated by Thranduil, Thranduil’s wife did not sit next to him as Queen of Greenwood, and Legolas and Gimli might not have become such good friends. I also realized that ASAN-KC works with disability-related organizations involved in social science (disability studies), art, music, and literature, which are my passions, and I finally decided that I am not all that passionate about filmmaking. As we got home, I realized my tendency to “hoard” may have come from the fact that in the past, I did not always think I would have very much beyond the bare necessities, and wanted to save what little luxuries I had (bottle caps, Lord of the Rings bookmarks, postcards, etc.), and that I used to have so much trouble with school work (around elementary school) and developmental milestones that I often had trouble understanding what people wanted from me later in life, whether teachers, parents, or bosses.
The day after I got back from UCM I finished a drawing I had started the day before: on one side was the face of Mahatma Gandhi; on the other Thorin Oakenshield, the dwarf leader from The Hobbit. While Gandhi was an ascetic who freed India through peaceful means and had a tendency towards forgiveness, Thorin was vengeful, whether towards Smaug or Azog, and sought to reclaim his people’s treasure horde, but the way I saw it, the yin-yang was present: both loved the people, and were willing to fight, even die for them. I finished the picture and posted it on Facebook.
Later I saw Kelly Green, autistic activist and moderator of the Facebook page and website Artists and Autism, left a comment asking me if she could put it on Artists and Autism’s page, to which I said I would love that. Later I went down to Better Cheddar, where I got a new bottle cap for my collection from my drink and found another one near the tenant’s recycling bins.
The next day I found another bottle cap for my collecting near the tenant’s recycling bins. Then I went to Starbuck’s where I read more of Water Touching Stone. I got back and made another coaster from receipts and worked on some more plastic bag yarn, or “plarn.” My mom and Dave paid me to drive them to and back from Homestead Country Club and when I got back I made some more plarn and worked on some more receipt coasters. I soon saw my picture that was shared on Artists and Autism got over six hundred likes on Facebook.
The next day I read more of Water Touching Stone at Starbuck’s before I went to Hen House to work. After that I got another bottle cap from a drink I got there. I got back and talked to Tyler. I went to work the next day and got a different bottle cap from my drinks that I got afterwards. On Friday Erin and I got together at the Cheesecake Factory and I gave her the drawing for a birthday/Christmas present, and she gave me a documentary The Tibetan Book of the Dead. The next day I did a drawing of Peter, which I showed to my mom and Dave it and they loved it. Then I did a drawing of Hook and started one of Reeder. I showed my mom them and my drawing of Elsa from Frozen, and she loved them. On Sunday, I chipped in with Cam and Jamie for a present for my mom and Dave, and decided to give Aunt Laura one of my toilet paper roll wall pieces. I also went to work and got a new bottle cap from my drinks after that. After that I went to work again and got a different bottle cap at the CVS in the shopping square after I got off work. On Wednesday I got together with Tyler and we saw The Hobbit: The Battle of the Five Armies, which we both particularly enjoyed. My family and I had Christmas Eve dinner of steak followed by Andres matterhorn and pastries for dessert. That night, Jamie saw my toilet paper roll wall piece, which he took a picture of and shared it with Artists and Autism, writing:
My 25 year old (older) brother with Asperger's Syndrome made this out of toilet paper roll cardboard. He makes recycled artwork and his name is Ben Edwards.
After that I opened my stocking getting a beer magnet bottle opener, some chocolates, two packs of Orbit gum, some “Hello Titty” condoms, an eraser, a dream catcher, and a Tequila Worm lollipop from my mom and Dave. Then I gave my presents of paracord bracelets to Jamie, Cam, Kate, and Graham. I also got The Promise of a Pencil: How Ordinary People Can Do Extraordinary Things, a beer mug from my mom’s and Dave’s trip to Germany, a photo of an endangered duckling from New Hampshire, the Lego Architecture Imperial Hotel from my mom and Dave, a completed theme song for Cheap Charlie, a mock reality show idea I had for my mom’s dad, who was known to be extremely cheap, from Jamie, and some gummy bears and bottle caps from Cam. Then we had bacon, eggs, and mimosas for breakfast along with some cinnamon rolls. Then Dad picked us up and we went to our grandparent’s house. I gave everyone their gifts and they loved them. My grandparents gave each of us grandchildren one hundred dollars, Dad and Sherry gave me National Geographic’s Backyard Guide to Birds of North America, The Tao of Leadership: Lao Tzu’s Tao Te Ching Adapted for a New Age, and a Buddhist mudra candle holder, while Todd, Laura, Abby, and Eric gave me the Lego Villa Savoye and The Gallery of the Celestial Buddhas. My aunt, of course, loved my wall piece. Then we went on our annual Christmas walk around the neighborhood. I got back and built the Villa Savoye. Then we had Christmas dinner and cookies. After that we played Pictionary. I also saw my toilet paper roll wall piece had gotten over three thousand likes on Artists and Autism.
I got a call from Hen House asking if I could work tomorrow from 11-7:30, and I said I could. Then I finished my drawing of Reeder. After that I went down to work where I got a non-crown bottle cap and a USDA bottle cap from my drinks on my break. I also realized that that if UCM’s Autism Awareness” Homecoming queen Caitlin Stauffer really has done more for the autistics at UCM than me, why are they still unwilling to come out of the autism closet, and why have I never seen a poster by her on autism in the Union, or a blog by her? I got back and asked my mom to deposit my pay check and my one hundred dollar bill from my grandparents, and she said she would.
|Princess Anna, top middle; Peter, top right; Erin; bottom left; Jennifer, bottom middle|
Wednesday, March 11, 2015
On the first day of December I got the idea to glue my non-crown bottle caps to an old record as a reference to song from the quote from Thorin Oakenshield, “If more of us valued food and drink and song and cheer over hoarded gold and silver, a much merrier world this would be.” Then I went down to Walgreen’s and got some shampoo and toilet paper. After that I fixed my god’s eye while I saw Sara. Then I went down to the OAS Office to schedule my Anthropology of Food exam. After that I went to the Union bookstore and got some hooks for my god-eye. I got back and hung it up, along with my yarn painting of Gandhi. Then I made some more plarn. After that I went to my Cinematography class where I got a 16.5% out of 30 on the exam, but it counted for less than 10% of my total score. After that I called Mom and asked her when I might say I can work until before we go to Colorado and she said the 26th. I called Hen House and found out Rick wasn’t there but he was be there tomorrow. Then I went down to Crazy Dog’s and had some honey barbecue wings. Later I went down to the Rec Center and saw Sara along the way and we talked. While I was there I worked on another drawing. I said another sankalpa (Buddhist affirmation for the next day) that night.
The next morning I went to my appointment with Krisana and I enrolled for the Geography of the Former Soviet Union, Native American Religions, American Naturalist and Realist Literature, and Comparative Cultures. During that time, Krisana said I had ninety-eight credit hours, which meant I was due to graduate the next semester and ought to apply for graduation soon. I thought that couldn’t be and I only had ninety-two credit hours, fifty from JCCC and forty-two from UCM, and still had two more semesters. In any case, I did not think I could start the Autistic Student and Peer Organization in just one more semester, and it was something that meant so much to me and that I had put so much work into.
Soon after that I called Hen House, but they told me to call back later. After classes got out, called Hen House and gave Rick my schedule. After running, I talked to Dad, who said he does have some records for me to use for my bottle cap peace signs that we can check out the next time we go to Grandmom’s and Granddad’s house. After that I went to Late Night where I saw some new American Dad!. The next morning I went to work with my Creative Problem-Solving group and we finished our model, assigned speaking roles, and I filled out my evaluation worksheet. After that I went to see Cathy at the OAS Office and got my accommodation letters sent out, and I told Cathy about my concerns about the number of credit hours I had being miscounted and she printed off a degree audit, which confirmed my ideas, and told me to talk to my academic advisors about it. Later I made some more plarn.
Later I reposted The Friend of Autism Pledge on Facebook. Then I had dinner with Josiah, who gave me his number before he moves out into Foster/Knox. I got back and saw three more people, including Jess, had liked The Friend of Autism Pledge, and I added their names to my list. Then I finished my Anthropology of Food paper. Later I saw Jennifer Smith from the Autism Society of the Heartland had liked The Friend of Autism Pledge. After that I went down to Break Time where I got a new Snapple cap for my collection from my drink and picked up and recycled a bottle I found.
After my Anthropology of Food class the next morning I took a short nap. I also worked on my bottle cap wind chimes. Then I sat with Mardy, Alex, Mary, Blair, and Ellie at lunch. During my Creative Problem-Solving class my teammates and I worked more on our project. Soon after I got back to my dorm I went to the mandatory meeting for our hall. Then I had some cookies for National Cookie Day at dinner. Later I made my first sing from several of the crown bottle caps in my collection, using wood I brought from home during the break, saying “Now.” I was rather pleased with how it turned out. That night I also recited a sankalpa.
The next morning I went down to the hardware store to buy some more, and then Bi-Lo Mart and got two drinks along with a four-pack out drinks. I got back from the Rec Center and talked to Dad, who said he saw Sean Swindler today, and he was very full of good things to say about me, and said that he thinks I really changed the culture of JCCC. Later Josiah gave me a bag, which was full of candy canes. Then we watched some College Humor videos together. After that I walked down to Break Time and got some Altoids. That night I recited a sankalpa again.
The next day I made another receipt coaster and finished another one. Then I went down to Those Were the Days and bought some more embroidery floss. I also began thinking more about how mindfulness teacher Jon Kabat-Zinn, used to say when asked by people if pure attention in Buddhism had anything to do with Attention Deficit Disorder, and how he would answer that the Buddha would say everyone in our society has Attention Deficit Disorder. I decided I was going to write a letter to him asking him to stop saying that, feeling that was demeaning and offensive towards people with AD/HD such as me. I got back and worked on my yarn painting some more. Soon after that I talked to Granddad, who I told about my idea to write a letter to Jon Kabat-Zinn asking him to stop quoting the Buddha as to saying everyone has ADHD and about how as an autistic I feel so underrepresented in Buddhism, and he said I he thought my letter was a good idea and that I had a lot of good points that he never thought about before. Then I worked on another coaster. After running I talked to Dad, who liked my letter idea. Then I worked on my yarn painting some more. After that I talked to Tyler, and I promised to call him again tomorrow.
The next day worked more on my yarn painting. Soon after that I had dinner with Jess, Josh, Drake, and Larry. After that I worked more on my bottle cap wind chimes and found a place to store all of them in my old hot glue stick bags in my old jelly beans bag. Then I started another receipt coaster. After that I ran on the treadmill for about an hour while I made some more plarn. Soon after that I realized I might not need to worry about feeling unappreciated at UCM for my autism work because Teigan might be coming here next year. After that I went down to Break Time and got two packs of beef jerky and doritos. On my way back I picked up and recycled a bottle I found on the ground. When I got back I talked to Tyler and decided each time I talked to him I would praise his advice because it makes him feel good, and in some ways he does have good advice. I also saw how he can be much smarter than people think.
I worked more on one of my plarn belts. As I took a shower, I decided that since I only had two vyvanse pills left, I would skip them the next day or the day after that so I could take them on Thursday and drive home them. I went down to Walgreen’s to get them refilled, but they said it was too early. Never-the-less I did pick up and recycle several recyclables I found on the ground and picked up several receipts which I used to complete three more receipt coasters when I got back. I also realized that if I focused less on my feelings of being unappreciated as an autism advocate, of being unsupported, and how dire the task were, I might be more productive in coming up with ideas, and that, if stimming can help one regulate one’s focus, one could also use it to focus on the things that make them happy. Later I turned my form for the testing center into Dr. Yelton. Then I went down to the bank, deposited my check from my grandmom, and got several quarters. I got back and did some laundry, during which time I worked on my crochet belt. I also decided not to focus so much on my love life for a while, so I’ll have less stress over that and be more able to focus on the group. After that I had dinner with Josiah, Tyler (different Tyler), and a few of Tyler’s friends. I got back from the Rec Center and started two coasters. After that I went to Late Night where I joined Josiah and Josh. Later I worked more on my final papers for my American Renaissance class.
The next day I vacuumed my room. Then I took out my trash and recycling. Then I cleaned them out. After that I signed on to Pinterest. Then I ate with Jacob and Josh in the cafeteria. I ran on the treadmill while I worked on my plarn belt. I also worked on my final papers for my American Renaissance class. That night I hung out with Josiah and Josh in my room. The next day I went to all three of my exams, making some plarn in between my first and second one, got checked out of my dorm by Jess, and drove home with my mom.
Saturday, March 7, 2015
The day after I got back for Thanksgiving Break I worked on making some more plarn. After that, Cam, Nora, and I met my dad at Panera, and he gave me his bottle caps that he saved, from which I got two new bottle caps for my collection. Then Cam, Nora, and I went to Hen House where I met Rick and he told me to call him on Monday about work. Soon after that I talked to Tyler.
The next day I worked more on one of my drawings. Then I read through over half of my book for my Anthropology of Food class, pausing every so often to go to the bathroom, draw some more, and help my mom edit one of her Facebook posts, and I got better at my drawing too.
I showed my mom and Dave my drawings based of The Lord of the Rings appendices, and they liked them. Dave and I talked a lot about the gaps Tolkien left in the appendices of The Lord of the Rings and how there’s a whole Middle Earth fan fiction based off that, which he said I might enjoy. After I told my mom about how I planned to attend ASAN’s meeting tomorrow if I don’t work, she asked if she could come, and I said she could. I had dinner with my mom and Dave after that and told them about my time at school. Later I went down to Starbuck’s, where I thought to myself, “If an Autism Awareness Homecoming queen candidate, of all people, deserved to be recognized at UCM for helping the autism community, why has she not made the autistics at UCM more able to be openly autistic there?”
The next morning I realized I realized Alpha Sigma Alpha may have put an “autism awareness candidate,” as Homecoming Queen Candidate in an effort to help my group. day I called Rick and found out it was too late to get me on the schedule before the 30th, but I understood and felt a little relieved to have a little bit of a break. Then I worked on my drawings some more and then some plarn, around which time I decided to maybe make Jack and Elizabeth something for Christmas, thinking of the parents they lost who are no longer around to give them presents, except perhaps in spirit. Then I went down to Starbuck’s and enjoyed their peppermint Frappuccino. Soon after that, my mom and I met Dave at Bella Napoli en route to the ASAN meeting, which my mom stayed at temporarily to check out, before we headed back home. There I saw Mrs. England, her son Cole, his girlfriend, Pam, Anna, Spencer, and Marshall. Teigan stayed at home to de-stress from her school worked while Spencer led the meeting and Marshall led the chat room. During the meeting, our two main points of conversation were ASAN’s participation in the Autism Society of the Heartland’s autism walk, of which ASAN would benefit from, and National Day of Mourning on March 1, for all the disabled people this year who had lost their lives to their care-givers. As the meeting ended and I left, Marshall said, “Good to see you, Ben.”
I got back and edited a poem in my journal and then found another way to moderate my pacing: with animals, namely Peter. That night, I recited a sankalpa, a practice in Buddhism whichinvolves setting an intention for the next day, as I had done about a week ago. The next day I worked on some plarn some more. After that I went down to Starbuck’s. I got back and had burgers with Cam, my mom, and Dave. After that I decided to one day go around America and other parts of the world and see sites associated with the Disability Rights Movement, and started listing them in my little pocket journal. After that I talked to Granddad some and he assured me I do a lot more for the autism community than “Autism Awareness Homecoming Queen,” and agreed that ASA may have appointed her Homecoming Queen candidate because she wanted to help the group. Then I finished another bottle cap tambourine. Once more I recited a sankalpa that night.
The next day I went down to the store and got some pie crusts for my mom. I also e-mailed Mrs. England and Riccardo with The Friend of Autism Pledge. My mom's dad, who we his grandchildren call Pop-pop, arrived, aling with his girlfriend Sandra. I also finished reading Eat, Drink, Vote. I had Thanksgiving dinner with my mom, Dave, Jamie, Cam, Pop-Pop, and Sandra, and it was very enjoyable. Soon after that I read some of Unfinished Tales while I waited for pie, and continued reading it afterwards. I also read an article on-line about dealing with grief that was very helpful, talking about ways to express it, including art and poetry, as well as reading books and poetry. Soon after that I watched American Dad! with my mom, and for a short time Jamie, who was doing it in the hopes that it would get me to watch Trailer Park Boys. Pop-Pop said goodbye to me, and I made some more plarn. I also remembered how it’s been a while since I read my Tanaina Tales of Alaska book, but also my Inspector Shan books, whose character I loved for his Sherlock Holmes type wit, though he is a much more grim and sad character. That night I once more recited a sankalpa.
The next day I found out Jane England sent me an e-mail agreeing to let me add her name to The Friend of Autism Pledge. Then my mom offered to pay me to mow the lawn tomorrow. After that I finished and posted my next Ben’s Blog post. Then I went with my dad, Jamie, and Cam to pick up Joe’s Kansas City Barbecue and went to our grandparent’s house where we all had it for dinner, after which my grandmom offered us some of her pumpkin bread, which I still had enough room for after dinner. As we drove home, I decided I could get some signatures on The Friend of Autism Pledge by reposting it, and sharing a link to my post on some of my autism groups. After I got home I did my part of the project for my Creative Problem-Solving class. Then I reposted The Friend of Autism Pledge on Facebook and shared a link to it, and put on my post that if anyone didn’t want their name to be on it on Facebook, they can message me saying “porcupine,” and I will add their name. Soon after I posted The Friend of Autism Pledge I got nine more names to add to my list through Facebook. Again I recited a sankalpa that night.
The next morning I saw my pledge got another like on Facebook. Soon after that I worked on my book report for my Anthropology of Food class. Then I went down to Starbuck’s. I got back had Minsky’s take-out with my mom and Dave, during which time my mom asked me to ask about Sara’s tattoo. After that I put some of my clothes in the laundry. That night I also recited a sankalpa.
The next day I saw I had gotten another like on The Friend of Autism Pledge. Then I worked more on my toilet paper roll wall art pieces. Then I packed up for UCM. After that I drove back there with my mom. When I got back I put all the names I had gotten for The Friend of Autism Pledge earlier on there. Later I wrote some poems during dinner. After dinner I went down to Break Time I got some more beers. I got back and Josiah gave me a Twix and some pumpkin bread, and I gave him a beer, and then we hung out while I found that one of the bottle caps I got recently was new to my collection. Then I put my sheets on my bed. After that I ran on the treadmill for about an hour, where I worked on some newspaper bag plarn. After that I got back and finished making the plarn for Jack’s, Elizabeth’s, and my god’s eye. Soon after that I made some more plarn for a homeless blanket. Then I talked to Tyler. That night I also recited a sankalpa.
Sunday, January 25, 2015
The post for ASAN-KC for National Philanthropy Day appeared to have been a success, and on the 15th and 16th I noticed the chapter got about twenty more likes on Facebook. On Monday I went to breakfast, where I ran into Kriti, who was working at the dining hall, and said I’ve put some very fascinating posts on Facebook. Then I recited a gatha to help get me through my reading for my Cinematography class. Then I started the reading. After about ten pages, I took a break to get lunch, coffee, and draw in the cafeteria, where someone walking by saw my drawing and complimented me on it. After that I finished all the reading for my Cinematography class. I went to that class, during which time I decided to keep doing Ben’s Blog after I finish school, to talk about the future of my group and other groups like it, my art, my poetry, my ASAN work, the future of The Friend of Autism Pledge and the Autism Rights Movement, though I still wasn’t sure whether I would go to grad school afterwards, but in any case, wanted to continue these pursuits for the betterment of the autistic people. After dinner at Crazy Dog’s, I got back and did a lot of reading for my American Renaissance class. Then I ran on the treadmill for about an hour where I ran saw Beth and Jessie. I got back and went to Late Night where I did some more drawing. I also learned of the Buddhist practice of reciting a sankalpa, or intention, every night before bed to feel better the next morning from Elephant Journal’s article on Facebook Do These 5 Things Before Bed and Wake UpHappier. That night, I said onebefore bed.
During my Anthropology of Food class where I decided to put my Eat, Drink, Vote book in my backpack today so I don’t forget to bring it home. Afterwards I realized that ASPO could be a good bridge between ASAN-KC and ASAN-SL, as well as ASAN, Alpha Sigma Alpha, the Autism Society of the Heartland, and THRIVE. Then I read some more of the reading for my American Renaissance class. After that I worked on some more on my drawings. During my Creative Problem-Solving class, I got back my latest assignment with an 86% and worked some more on our model with my group. I also heard there is a new Facebook page called Boycott Boycott Autism Speaks, which has gotten ten likes since it started yesterday, and is now giving free publicity to the real Boycott Autism Speaks. After that I treated myself to a chocolate chip brownie and a white chocolate blast while I learned that five years ago, the Alpha Xi Delta chapter of Miami, Ohio held a party in the Underground Railroad Museum, which they trashed and urinated all over out of drunkenness, and on a slave’s pen, and I realized that the Black community would not respond very well to that. I also recited a sankalpa that night.
The next day I worked on our group project for my Creative Problem-Solving class with my group, where I ran into Sara, and I spent some more of the day working on my drawings. Later I hung out with Josiah and Josh. I got done a lot more of the project for my Creative Problem-Solving class the next day before my American Renaissance class and during my Creative Problem-Solving class. I worked some more on it the next day until my Granddad came to pick me up. As I was packing, I noticed Kaitlyn had put her name on The Friend of Autism Pledge. As I got ready to go, I saw Sara leaving, introduced her to my granddad, and said goodbye to her. I saw her as I got into the parking lot, and she smiled at me.
My granddad drove me home and took me to Minsky’s to eat on the way. As we drove, I learned of a black autistic boy named Reginald Latson, who was arrested for “suspicious behavior” from Boycott Autism Speaks on Facebook on my phone. On the hashtag #freenelilatson, I wrote, “Neli's sole reason for his suspicion was that he was black and autistic. You wouldn't find this with a white neurotypical. Neil was found guilty of assaulting a law enforcement officer when he tried to get him off him, and being on him caused him several bruises and a shattered ankle. The cop was a grown man armed with a gun. Neli was a young teenager who was unarmed. I hope the judge and jury are stripped of their respective privileges for some time and that the cop is suspended. Being black and autistic are not reasons to suspect someone had a gun, and teenagers should not be sentenced for defending themselves against an armed man. Free Neli Latson #freeneli.”
While we were at dinner, my granddad told me that my mom told him that Donna gave a painting of hers to the Mission Project art auction, which made me realize I was grateful, in addition to her generosity, that I introduced Jack to her. I also called Hen House, and learned I wasn’t on the schedule yet. Then I got and worked on some more plarn.
Friday, January 9, 2015
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. After that 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 Cheetoh’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. Then 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. Then 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. Soon afterwards 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 cheetohs 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 sent 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 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. Then I 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.”
|Aragorn in the land of Harad, in the far south of Middle Earth|
|Aragron in Moria|