A Week of Advocacy

Monday the 21^st had come and it was the day of the July meeting of the Autistic Self-Advocacy Network of Kansas City. Before I went, my mom told me the directions to the Plaza Library where it was taking place. I got there safely, remembering to call my mom to tell her when I did, and waited outside the room we were meeting at until it started. Soon a tall woman with dark hair arrived and stood outside the room with me, and then a young man, slightly shorter than me with straw-colored hair. We went in and sat down, and then a young woman with blonde hair and glasses arrived, followed by another young man. Soon, our director Teigan Hockman arrived, followed by a man with dark hair and thick-framed glasses, the former with completely dark hair save for a green ponytail in the back. Then another young woman with shoulder-length dark hair arrived. Then another man with thin blond hair arrived.

                At last, when we decided everyone who was coming was here, Teigan suggested we introduce ourselves. She began, saying she went to Penn Valley Community College, and started the Kansas City branch of the Autistic Self-Advocacy Network. Then the man next to her introduced himself as Marshall Edwards, the husband of Teigan and self-diagnosed as having Asperger syndrome. Then the young man I had seen outside in the hall introduced himself as Skyler and twenty-five years old, with Asperger syndrome and ADHD. The woman I saw in the hall introduced herself as Pam, saying she was self-diagnosed as having Asperger syndrome. The dark-haired woman introduced herself as Wendy and said she was a student in the organization Disableds in Higher Education. Finally, I introduced myself saying I was Ben Edwards, and I am twenty-four years with autism, I go to the University of Central Missouri where I run a student group for students with autism, and I have two autism-related blogs.

                “Wow!” said Teigan. “Well, we know you’re busy when you’re at school, but we’ve been trying to get you to come here for a while.”

                The blonde women introduced herself as an artist with autism, and the other man, her boyfriend, introduced himself. Then the last man introduced himself as a man with Asperger syndrome who was a board member of the Autism Society Heartland. Soon we got our on-line Facebook chat going.

                “Oh, good, Elizabeth’s on,” Teigan said.

                Finally, our meeting started, and Teigan began, “Well, for this meeting we have three main things on our agenda, but first I want to tell anyone who’s unfamiliar about our group. We are a response to groups we who we feel do not really represent autism, such as Autism Speaks. They recently made a documentary called Sounding the Alarm, which had so many hateful messages about autistics, saying they’d rather have no children than an autistic child, or that having an autistic child is a living hell, or calling this new wave of autism an autism tsunami.”

                The others stirred.

                “That sounds like a roller coaster ride,” said the ASH board member. “Come ride the Autism Tsunami.”

                “And the group only donates four percent of its money to services for people with autism,” said Teigan.

                “Actually, this year it was only three,” said the board member.”

                “Three, four, what’s the difference to them,” said Teigan.

                “Anyway,” she continued, “We are a non-judgmental group, so if you want to walk around, stand up, or flap your hands, we accept that.  And normally we don’t clap our hands, because a lot of autistic people find that hard to deal with. Instead, we do this.”

She raised her hands in the air and shook them, very much like the pictures I had seen associate with a publication for stories, writings, and articles by people with autism, the Hands Loud Project, by our main chapter. 

 “So,” said Teigan, “Our first order of business is that we want to show a screening of a documentary called Citizen Autistic, and it deals with the autistic self-advocacy movement, but we need to raise the money to show it. I was thinking we could have a silent auction. I could sell some of my art and Marshall was planning on selling some of his comic books that he wrote.”

                “I have some art that I could sell,” said Wendy.

                “I have some art,” said the woman on my left.

                “I have these coasters that our made from receipts folded up and taped and glued together that I could make,” I said. 

                “Oh, like that paper art,” Teigan asked.

                “Yes.”

                “Ok. Are there any other ideas beside a silent auction?”

                “I could give some dance lessons,” said Wendy. 

                “We could show movies about autism,” said the blonde woman. “There’s Loving Lampposts.”

                “Yeah, and there’s Wretches and Jabblers,” said Teigan.

                “So,” Teigan went on after we had finished discussing ways to raise money, “Next, I wanted to go around and hear everyone’s thoughts on the group, because I feel that why I started this chapter, this isn’t all about me. I want to hear from all of you guys.”

                That was exactly what I thought all the years as I had founded two student organizations for students with autism. Marshall, Skyler, Pam, and Wendy all said their thoughts as we went around. They tended to talk about how they were self-diagnosed and how they thought it was important what the ASAN was doing. Finally, we got to me, and I said, “Well, have any of you heard of the Facebook page Boycott Autism Speaks?” I asked.

                Teigan nodded.

                “Well, they’re now taking art, photos, poetry, and pictures of people holding up signs in protest of Autism Speaks and wanted to let people know that in case they wanted to send any. I’ve also thought that a good way to protest Autism Speaks would be to put duct tape over our mouths with the Autism Speaks puzzle piece, to symbolize how Autism Speaks silences people.”

                “I like that idea,” said Teigan. “I’ll write that down, but I just thought I’d let everyone know that while that is good, we are not one of those organizations that chains ourselves to posts, although you can do that if you want.”

                “I also have been writing a letter to one of their sponsors the sorority Alpha Xi Delta, asking them to revoke their sponsorship of Autism Speaks. I think they probably don’t have autistic children like the owner of Home Depot and they may be more willing to listen to us, and I thought if anyone wanted to, they could take a look at the letter when I’m finished and give their input.”

                “We’ve tried writing to them before and they keep writing back to us saying, 'We think they’re doing great.' But the more we write to them, the more we chip away at their convictions.”

                “It’s happened before when we got Chili’s to drop their sponsorship for the National Autism Association,” said the Autism Society Heartland board member.

                “We have a message from Elizabeth,” said Teigan. “She asks, 'What else is our group about? Aren’t we about more than simply criticizing Autism Speaks?’”

                “Well,” I said, “While we do criticize Autism Speaks, that’s only part of something bigger. Our main goal is to create greater inclusion and acceptance of autistic people.”

                “That’s right,” said Teigan. “I’m going to write that down.” 

                At last, we got to the business of creating our website. “If anyone has anything to send us, like if they know of a sponsor of Autism Speaks, so we can let people know, or autism-friendly resources or professionals who can help many of our member s get diagnosed, we’d like that, and professionals like it to because it’s like a recommendation for them.”

                “Perhaps we could have something where we autistics tell our stories?” said the blonde woman.

                “Yeah, like The Autism Monologues.” said Teigan.

                As we left, the blonde woman said to me, “You took the words right out of my mouth when you said that we are about finding greater acceptance and inclusion for autistic people.

                I got home and updated my Facebook status saying I had my first Autistic Self-Advocacy Network meeting and that it went great. I told my granddad about it, and he was very excited. I unwound by working on my travel plans to Germany. The next morning, I found out my recent status got fifteen likes. That day I made five more coasters from receipts. I took a short break for breakfast and decided I could help my dream of being a translator by reading the introductions and gratitude of other translators to know I could go to for help. Then I spread mulch for Mom, swimming in the pool halfway through the work and afterwards. Cate got there that day to, and said to me, “Oh, Ben I have something for you.”

She reached into her suitcase and gave me a magazine on Buddhist traditions of India and Tibet. 

“I have a subscription to these as a member of the museum in New York and I get them every month.”               

“Well, thank you,” I said.

Then I went to Starbuck’s. I got back, after which Mom said I did a really great job on the mulch, and then I started making some more dream catchers. After dinner I talked to Dad, who was excited about the news of ASAN. I also decided to sell the dream catchers, for ten dollars apiece, the coasters for twenty-five dollars, both Mom’s idea, and the friendship bracelets for $2.50. Then I watched Wilfred with Mom, Dave, and Cate.

The next day I went to Winstead’s and then Barnes and Noble, where I got a Lonely Planet book in Central Asia, before going to the Pathless Land. Before we did our meditation, I told Ben about my receipt coasters and dream catchers and asked him if it would be alright if I told the group about them before we started the discussion group, and he said it would. The next morning at my art class, I told Donna about the silent auction, and she said she would be happy to donate one of her paintings to it.

“Really?!”

“Yes. It’s a good cause.”

            I got home and met with Mardy at Starbuck’s, and he agreed to bring a TV and a fridge (since his was bigger) for our room together next year, and I would bring the microwave. We got back and watched TV before he had to go home to great some family members coming into town. The next morning, while passing the time before I went to the Camp Encourage panel for adults with autism, reading my Lonely Planet Turkey book. I read a part on Turkey’s beloved founder, statesman, and revolutionary Ataturk (meaning “Father Turk”). Towards the end of the boxed text, I read after years of being a military man and reformer, he died a young age at age 57. Then a car pulled up to my driveway, which turned out to be Michelle Hass, there to give me a ride. We met and I thanked her for the ride, and we passed the time talking and sharing experiences and stories of ours. I got to the camp and met the other person on the panel, a blonde young man, named Eric. This time, Kelly told us, we would only be doing to panels with more groups together, so it would be less exhausting for us. We arranged chairs and the kids got in we began by introducing ourselves. I told them my name was Ben Edwards and I was twenty-four and a student at the University of Central Missouri who ran a group for students with autism and I had two blogs related to autism. Eric, I learned, was in community college and wished to become a zookeeper and was a counselor at the camp. At the end of the first panel, a camp board member approached me and introduced himself.

“Hi, Ben,” he said, “I heard you, and I thought you were just great. You are clearly very intelligent and articulate and a great advocate.” The second group came in, along with a young neurotypical counselor, who I recognized from last time. I found her nametag and saw that her name was Kayla. With each answer we gave, the children clapped, and Kayla looked at me, her eyes watered like the last time. The last question was, “What parting advice would you give these campers?”

                “I would say that some people would say that some of your 'special interests' as people with autism may not get you anywhere, that there might not be a demand for them, but there are several autistic people like Temple Grandin, Daniel Tammott, and others who had their special interests and they managed to make a career from them, so I would say that whatever your special interest is, go for it.” People clapped and several campers and counselors came up to me and asked me questions. “Do you enjoy being autistic?” “Did you ever use sign language?” “Were you ever completely non-verbal?”

                After I had answered all these questions, Kayla said to me, “Thanks for coming, Ben. You’re an inspiration.”

                “Thank you,” I said, and then asked her and Cassidy, “Do you two have Facebook?”

                “Yes,” said Kayla. “It’s Kayla Rodes. R-O-D-E-S.”

                “Cassidy Goodman. G-O-O-D-M-A-N.”

                Thank you,” I said.

                “And you’ll have to message me the address of your blogs,” said Kayla.

                “Definitely,” I said.

                I drove home with Michelle, thanking her for the ride, and relaxed, tired after an exhausting day. I managed to find Cassidy on Facebook, though for some reason, I couldn’t find Kayla, and decided to ask another counselor like Cassidy about it. After watching a bit of TV, a paced momentarily in the kitchen, remembering the Turkish leader Ataturk having died at the age of 57, wondering, half-seriously, if a similar fate wasn’t in store for me.