Visiting My Brothers and Sisters

            On Saturday morning in the middle of September I drove down to the Overland Park Convention Center for the Kansas City Ability Expo featuring artists from the Kansas City area, including Teigan and Marshall from the Autistic Self-Advocacy Network of Kansas City. After a little trouble finding the directions I got there and sure enough I saw them, sitting at a table with Teigan selling some of her drawings and Marshall selling comic books of his. They both seemed very happy to see me. Teigan told me that Elizabeth had come earlier.  

                “Thanks for coming!” she said.

Teigan told me at the Expo about ASAN-KC’s new petition to Netflix to get them to show more movies with positive portrayals of disability, as she said when you search ‘disability’ on there, the first thing that comes up is Autism Speaks’ film Sounding the Alarm. I told them about how I had recently been working on my letter to Alpha Xi Delta national president Sandy Edwards trying to persuade AZD to withdraw their sponsorship of Autism Speaks. Teigan told me that they at ASAN-KC had e-mailed them several times, each time getting back a “sorry, but not sorry” response. She suggested that we could try reaching out to individual chapter leaders instead to try and get all that we could on our side and until much of AZD had changed its viewpoint that Sandy Edwards would have to respond. I told her though that if individual chapter leaders stopped supporting AS, they could face extreme consequences from the National Council of AZD. Then I told her my idea for getting at least two hundred people from the autism community to put one-star reviews on AZD’s page criticizing their support of AS, since they now had an average review rating of 4.7 stars out of sixty-seven reviews and if we got two hundred or so autistics to put one-star reviews on their page, their average rating would drop so much and we could get their attention. Teigan liked that idea. I also told her my idea to get a bunch of us to put comments on their posts about their work with AS. She told me however that whenever someone puts a negative comment about AS on their page, they delete it and block the person.

                “Ok,” I said thinking heavily on the issue.

                “It’s alright,” said Teigan. “What’s that saying the squeaky wheel gets the oil?”

                 I met several artists at the Expo including an older woman with Cerebral Palsy, the mother of a non-verbal autistic girl who made several drawings, a deaf woman who gave me a pad of paper and a pen to communicate with her, and an older man with a speech impediment, who made fantastic prints and paintings. There were tables selling handbags, crochet patterns, paper cards with 3-dimensional flowers, and much more. I ended up getting two bookmarks for an optional donation and for $3 a card that said, “Thinking of you,” for when I find the love of my life and am away from her for a long time.  Before I left I went to say goodbye to Teigan and Marshall.  

                “Thanks for coming!” she said once more.

                “Sure,” I said.

                “You’re practically one of our favorite members. You’re a…what’s that word I’m thinking of?” she asked Marshall.

                “Asset,” he said.

                “Yes. I know, I’m just so tired, but yeah. We’ve been trying to get you involved for a long time… You’re like famous in the local community!”

                “Well, thank you,” I said.

                I finished saying goodbye to Teigan and Marshall taking some ASAN-KC business cards to give to people who might be interested in them. Then I went down to the lower floor, about to walk to my car and drive home when I got a call on my phone. Unable to see the Caller ID number because my screen was cracked I answered it, and a female voice came up, with me having trouble finding out whose it was because it sounded so similar at first to other female voices I know. Finally I found out who it was.  It was Erin. 

                “Sorry," I said, "I couldn’t tell who you were at first.”
                “Is there something you’re not telling me?” she asked in a very concerned tone of voice.

                “No,” I said honestly.

                “Cause I’m worried about you. Promise me you won’t do anything stupid.”

                “I won’t”, I said. “Don’t worry. I’m not going to drive in a car without my seatbelt like those two girls at UCM last year.”

                Erin heaved a sigh of relief.

                “Ok,” she said. “I was just kind of worried after I heard you had those drinks because I know some people who aren’t supposed to take alcohol because it interferes with their medication.”

                “No, it’s not that. I just didn’t realize how strong these drinks were.”

                “Ok,” said Erin, sounding relieved.

                Eventually I told her what I was doing, how I was at the Kansas City Ability Expo and what that was.      

                “You should get involved in that, Benny”, she said.

                “Really?”

                “Yes, cause your arts so good.”

                “Ok, well thanks.”

                I drove home and got back a few minutes later. Suddenly I realized that since I wanted to make plarn (plastic bag yarn) belts for ASAN-KC’s silent auction in November, I could take the gray Walmart bags I used to keep some of my stuff to repurpose, and replace them with white one, which I had over two hundred of to make plarn bags, which took about seventy bags, and use the gray ones for belts, as I thought that would look better for belts then white ones. After that I went down to Starbuck’s with my Cinematography textbook to read. First, however, I checked my notifications on my Facebook feed and saw that a Facebook friend of mine, Amy Sequenzia, another person who was famous in the autistic community, had invited me to an event on Facebook called “Tell Dr. Phil and the Media that Issy Stapleton is the VICTIM!” Basically, a mother, Kelli Stapleton, with a severely autistic girl had tried to murder that daughter of hers, causing her father to take her away, and Dr. Phil would be interviewing her on the Dr. Phil Show. We weren’t sure, but many of us were worried Dr. Phil would sympathize with Kelli’s statements that she tried to murder her daughter due to there being, “not enough services for her.” I accepted the invitation and then read my textbook.

                Later I went down to Jack’s new apartment in the Mission Project, with assistance for people with disabilities that let them live somewhat independently, seeing it for the first time. It felt great to finally see Jack again, and showed me his living room, kitchen, dining room, and bedroom, in which there were fantastic paintings and sculptures he had done at Johnson County Community College after he left THRIVE, including ones I had seen of his earlier. Jack had always been a terrific artist, and I was not surprised at these works. He also showed me a storage space he had down in the basement, where he kept his bicycle, and the laundry room. He also told me Corey, Zach, Pierce, and Julie, our friends from THRIVE, were now living at the Mission Project. He took me down to his workplace Script Pro., which manufactures pharmaceutical machines.  It was a beautiful building, which also had a goldfish pond and garden from a house it had bought, which was now part of its facilities, a rec center, and a martial arts and yoga studio. He took me to their break building, storage units, custodial area, and customer service building. It was a neat area and I was glad Jack got to work for it. In a couple of years, he said, he may move on to doing things other than custodial work, which he enjoyed doing for them. He said the people were really nice, some of them being funny, and that one person there also had autism.

                We got back to his apartment and ordered pizza from Dominos, which we walked down to get. As I remembered him, he ordered his with no sauce just like mine. Afterwards we watched the movie Cast Away on the sofa in his living room, and towards the end, I noticed Tom Hanks said that during all his experiences, when he wished he was dead, all he could do was breathe, and it reminded him he was still alive. Before I left, I gave Jack a business card of ASAN-KC, thinking he might want to get involved in the art expo next year.

                I got back home that night thinking about what Teigan had said earlier that day about reaching out to individual chapter leaders of Alpha Xi Delta to withdraw their support for Autism Speaks. I realized, of course, that if they did that, Sandy Edwards from the National Council might invoke harsh consequences on them. She might revoke their charter, and the whole chapter would no longer be in Alpha Xi Delta. But then I thought, so what? I had already given up something like that for the autism community, having opted the choice of refusing to pledge to Tau Kappa Epsilon fraternity last year to focus on starting an autism group at UCM, after feeling the bid was a refreshing step from years of bullying, discrimination, and misguided counselor, and since then had not looked back, as I said to my dad (about the autistic community of UCM), “they are my brothers and sisters.” If Alpha Xi Delta sisters were to wear the mane of autism advocates, why should they not have to sacrifice like I did for the cause? I remembered Cassie Burghoff, the first friend I had made at UCM outside of THRIVE, who I was now long sure had Asperger syndrome, remembering her sacrifice to be a social worker, and my willingness to honor her path despite the fact that I had grown very fond of her. Why should AZD sisters be considered top advocates when they have done what they do from comfort and convenience from being sorority leaders with resources and privilege like we had not had?

                The next morning before I went back to school, I gathered up all my gray Walmart bags I used to keep my recyclables in and put them in white ones. As I was about to leave and feeling stressed about all I had to do (at least that I wanted), I remembered what Tom Hanks said in Cast Away about how he just had to breathe and he remembered that he was alive, just how I remembered Timber Hawkeye in Buddhist Boot Camp said we can focus on our breath and remember that we are alive. Then, with my mother in the car next to me, I drove on the highway for the first time in a while to Lee’s Summit, where I would meet my grandparents who would take me back to school. We drove back, and I told my grandmom, who was excited to hear, about my work with ASAN-KC and their new existence in Kansas City.  

                “Well that’s good," she said. "We need that.”

                I got back, gathered my stuff, said goodbye to my grandparents, hugging my grandmom goodbye, and went up to my dorm. I took my recyclables (except for my glass) down to the recycling bin in the courtyard. Then I made four more leather bracelets, getting caught up on my quota. I also saw my plastic buckles had come in the mail. 

                I ate dinner with Josiah, Sally, and Josiah’s friend Ben tonight. After that I made another paracord bracelet. Then I worked on my song some more. After that I ran on the treadmill for about an hour. After I got back I got some more beers at Break Time, an amber lager, which tasted surprisingly good to me, and from which I got a new bottle cap for my collection. Erin called me, apologizing for jumping to conclusion with me yesterday, and told me she didn’t mean to imply I’d do anything. I told her it was fine and she didn’t need to worry. Then I went back to my dorm waiting to get to sleep, and remembered how whenever I mention anything autism-related to Cassie, e.g., my autism group, she tended to get a little annoyed at me mentioning such a thing, as if she did not want to talk about it. Yet I realized if one were to say that had an autism spectrum condition to their friends, it would be so much trouble faking to pass for “normal,” as autistics so often had to do.

                But I knew exactly how Cassie felt. There was nothing wrong with her beyond the way of being a normal human being. Having an autism group to go to and be accepted at couldn’t possibly satisfy the need to feel like everyone else.