Autism Acceptance Month 2016 (Year 6)

Copied and pasted from my Facebook account:

March 27

Hello all,

This April and April 2nd specifically is, for members of the Autistic Culture such as myself, Autism Acceptance Month and Day respectively. Note I say ACCEPTANCE, as opposed to AWARENESS, which are very different, and which is the theme of April and April 2nd for those who believe in the medical model of autism, such as Autism Speaks, the National Autism Association, and the Autism Research Institute. AWARENESS, symbolized with puzzle pieces and blue clothes and lights, generally focuses on autism as a medical disaster causing divorces and taking children from their family, and allows Autism Speaks executives to continue making their six-figure salaries while paying less than 5% of their organizations to any meaningful supports for autistics and their families. The blue lights, alluding to AS's puzzle piece symbol, comes from this fastly discredited notion that there are four autistic boys for every autistic girl, while autistics such as myself reject the puzzle piece as we are not broken pictures to be reassembled, and we, and our diversity, fit together naturally, with no beginning and no end, like the Autistic rainbow infinity piece. ACCEPTANCE, which we launched to take back April, embraces the social model of autism, being a difference to be respected as with homosexuality or any other difference, not caused by vaccines, genetic deformities, bad parents, bacon, tanning beds, and so on, expressed through links, photos, art, poetry, blogs, and events that portray my condition POSITIVELY-certain not as always peachy, as, like with every way of living, life with autism isn't perfect and has its problems, but this should not be the focus of how we view this segment of our humanity. I shall be doing this certainly, but I have one final "piece" to mention. THIS MONTH is celebrated by wearing and lighting GOLD, RED, TAUPE, and ORANGE, for the chemical symbol for gold (AU), the first two letters of the word "Autistic"; red, a heart, to symbolize autism, rather than a puzzle piece; taupe, the Tree of Neurodiversity (various mental wiring, including autism and neurotypicality, being valid); orange, the spark from the Celebrate Autism Foundation. Their is also green from the coil-and-jump logo for Great Britain's Autscape and purple for royal purple (indicating royalness) from Scotland's Autistic Rights Group Highlands, and the rainbow, but, not blue alone. Note, this is different from awareness, for its not just what we see, but the lens (or lack of) with which we are to see them. I have said before, we have enough awareness, but awareness is not enough. We need acceptance, and rather than donating to Autism Speaks, realize their our groups that will allow autistics their socially crucial need of acceptance, such as the Academic Autism Spectrum Partnership in Research and Education, the Autistic Union, the Autistic Self-Advocacy Network, the Autism Women's Network, and so on. I realize many may have a lot to learn, and I have a lot not to judge, but note this, throughout the entire month of April, I will not only be wearing gold, red, taupe, and orange (and green and purple), but I will be wearing no blue (except for my rainbow Autism Acceptance Day shirt, which is different, and make sure to put a photo of it on Facebook every day, so you can be sure of my promise. I did this last April from the 5th (when I got the idea) to the 31st, with clothes from the Salvation Army store in Warrensburg, a bottle cap necklace, glow bracelets covered in Cheetos bag strips, and handwoven friendship bracelets. And the results were amazing. All-in-all these posts got at least sixty likes altogether, over half a dozen from the UCM community, and more if you counted the faculty and staff and alumni. This time I shall do it again, all thirty-one days, somehow fitting it all in with school, work, my social life, and working on my novels every day as part of my New Year's resolution. I do not ask that anyone try this, but know that to me, blue does not signal an immediate ally to my solutions, and while everyone can learn more in cultural competence, I will not let my world go unaware of my message when I have the words, actions, and clothes to embody it. So if you see me and you notice I am not wearing blue, I hope this will explain why. ‪#‎AutismAcceptanceDay6

March 28

Today, I went to Ten Thousand Villages, and found this red leather bracelet made from scraps of leather from Columbia's textile industry, which says, "Be the change you wish to see in the world." -Mahatma Gandhi. I got it because it is red, in honor of 2016's Autism Acceptance Month in three days, and for its quote, which meant a lot to me as an autistic activist at UCM and elsewhere. ‪#‎AutismAcceptanceDay2016

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World Down Syndrome Day Year 10

Today is World Down Syndrome Day, a day that reminds me ever more of how grateful I am for my good friend, Tyler Nelson Weekly. I remember him being my roommate in our second year at UCM's THRIVE program, going with him to see all the Hobbit movies, watching his school dance performances, talking to him on the phone, having him spend nights at my home where we watched The Power Rangers, watching the Disney Channel of my own accord for a while after a year of living with him, coming with him to the Down Syndrome Guild of Kansas City's yearly Down syndrome dance, having him by me during my graduation from the University of Central Missouri, taking him for rides the first night I got my new car, going to Royal's game with him and our friend Jack, coming with him to Starlight Performances-where he is an usher captain-and the time he came with me to Minsky's on my twenty-sixth birthday and took a diagonally slanted picture of my mom and me. He constantly supports every dream I have and is just so eye-opening to the lives people with Down syndrome lead. He always wants to help me. I constantly love how he is funny, kind, intuitive, loyal, and so many other things that I am lucky that he is. I remember every time when I have looked for the right woman, and got to know one out there, Tyler would say, "Did you tell her about me?" and I said, "No, Tyler, but don't worry. I would be remiss if the girl I dated did not know about you." I once told my granddad, "Any woman who does not accept Tyler exactly as he is, is no girlfriend of mine."

"On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all."

-United Nations General Secretary Ban Ki-Moon

 

 

My 2015 Year in Review

My new year in review: from getting accepted into UMKC's graduate a Disability Studies program, to taking on powerful groups for the betterment of my fellow autistics in Warrensburg, to finishing my BS in Cultural Studies. Later my first pet-sitting job followed by speaking to Camp Encourage's autistic youth, followed by many long days of work, to art classes and nights spent with Tyler. Later starting at UMKC, turning twenty-six, finishing my first graduate semester, and creating many stories, songs, and graphic novels, along with reading several of my Lord of the Rings books and catching up with friends from high school, junior college, and UCM, while connecting with the wonderful Arc of Douglass County/Self-Advocate Coalition in Lawrence. Lastly I look back to getting an offer to come back to my volunteer job from high school at Ten Thousand Villages, endless hours of environmental activism, and one memorable night revisiting the autistic community I started at JCCC. My next year: spend more time with the people I care about, less listening to negativity or giving a shit about someone else's drama, more time working on my writing, art, and environmental crafts, listening more to what my gut tells me, and finish the conclusion to my account of my time spent in Warrensburg, Missouri, and then start on the writing of my account after Warrensburg and the aftermath of the experience, and my stories of dealing with issues in the autistic and disabled community at home and the pleasures and challenges of being here. I also learned to stop doubting and just believe there's a way for things to work out in my love life, for if I stop fostering all this negativity, things will find a way. Clearly, I'm proud of a lot, though it doesn't mean I am free of my own issues in every area of my life. However, I know what I want, and am willing to go far with the people who help me get there. Happy New Year, everybody.

Autistic Thanksgiving (kind of) after Twenty-Six Years of Life

Today is my twenty-sixth Thanksgiving, and, while I am grateful for the great things in my life everyday, I will say that I am also grateful for being able to join my dad and grandparents after work at Buca di Beppo (Italian restaurant), enjoying bread sticks with olive oil and particularly saucy hot pizza, and finishing it off with canoli sticks. Sometimes that interaction-despite knowing the tragic Native American side of the story of this day-allowed me to gleam more of who I am and why I am grateful for what I have and what is in my life. Sometimes (as I know all too well as an autistic activist), you will run into the most narcissistic people; people who revel in what they've been through and reach the conclusion that the world revolves around them, and their sufferings and experiences are more important than anyone else's in their lives (autistic and a woman has been called a double disability, as has being from other marginalized backgrounds). But as I indulged in banter with my family, I thought "People on this earth have gone through everything they did, and are alive after all that." I (have known) some of the happiest people in the world who are not alive after split-second car wrecks, terminal illnesses, and other misfortunes that can happen to anyone (including me). As I thought this, I also realized "Whatever some people have survived, be it true or not, they might not have lasted if they had lived in someone else's shoes." I know I have lived in mine, and nobody can judge better than I would who could have survived this life that has made me happier than ever. I am a small town autistic Buddhist with a passion for environmentalism and Lord of the Rings fandom. As I learned when I moved away from city life and spent the next four years in Warrensburg, Missouri, small towns are extremely barren for autistic individuals, in terms of services, basic understanding, and outlets for cultural expressions. Occassionally you will see "discussion" on autism, but it tends to be shallow, gimmicky, neurotypical-led advertising where the host group accrues great financial benefits while belittling grass roots autistic work. In Buddhist circles meanwhile, I find even there I can feel alone and marginalized as a non-neurotypical individual. This has even led to misunderstandings and the unfortunate burning of bridges with many NT Buddhist friends (though thankfully none at the Pathless Land or JCCC's SGI chapter). While many NT Buddhists are rejected by their conservative Christian parents, I find myself rebuffed by my fellow co-religionists. I find myself grateful that I can do my morning meditation every day with my homemade altar and still refuse to honk angrily at some driver ahead of me inside his SUV. Buddhist culture is not something people automatically grasp or accept in small towns in Missouri either, and it took months before I thought rationally enough to stop concealing my Buddhist practice from my roommate and best friend from junior college. As for small town life, I am reminded everyday that these areas hardly seem to be on the radar of everyday autistic rights activists and well-known individuals. They have grown up in cities, filled their shelves with participation trophies, devoid of post-secondary education in history, government, sociology, and anthropology, and away from the poverty of Warrensburg that enables a culture of "trigger-warnings," allowing student voices equipped with twenty-year old computer knowledge engaged in academic and departmental debates to win by default and become experts in their field of study. For me, I created all evidence of autistic culture in my life from scratch-markers, embroidery floss, pencils, candy wrappers, old CDs, paper and ink-to the point where I suddenly realize what a fellow autistic friend from Central Missouri meant about autistic cultures when she said, "Rural Missouri is where it's at." I thought about the culture of Central Missouri, and realized it is the perfect training ground for autistic rights activists, a hostile climate to provide the growth-giving hardships that soldiers are well beyond knowing. There are no safe zones, no trigger warnings, and the vast majority of your activism better be off-line because this town is too close and full of things going on for people to search the internet until they find your results. Sometimes I fear for the autistic rights movement because I know the young people who it will soon be shaped by are being raised under a coddling culture, which would never have allowed Dr. Martin Luther King, Jr. or Rosa Parks to openly defy the white government at all costs. I am grateful that I have still been able to believe in such a cause because I have done it in such a hostile environment before and will undoubtedly do it again many, many times. Happy Thanksgiving everybody.

5 Drawings: In Honor of Autistic History Month

For many autistics around the world, November is Autistic History Month ("because we need to know our history"-in the words of Kate Gladstone, see here), and in honor of this month, I've taken some drawings I've done recently to honor it.

I used this as my Facebook profile picture a few months ago.  It, of course, refers to autistic's tendency to stim (flapping hands, rocking, etc.)



Like the crests used by ancient Scottish clans, this represents the autistic world as one big human family (if not one where people fight with each other and don't talk for months) with five colors commonly associated with autistic rights organizations-gold (for which we have the chemical symbol Au, the first two letters of Autistic), red, taupe, orange, and purple, and five common autistic symbols-the butterfly, a flower, infinity sign, and a heart, along with the slogan of the Disability Rights Movement and the Autistic Self-Advocacy Network "Nothing About Us Without Us."  This was also another profile picture.

Another profile picture, my likeness drawn in the four main autistic colors-gold, red, taupe, and orange.





 

This one's pretty self-explanatory.  It got many likes and a share from a mother of an autistic child who I am a Facebook friend of, saying alongwith it, "My son is not a puzzle piece."

 

 

 

In light of the recent attacks in Paris, I saw profile pictures going around of the French flag with a puzzle piece inside.  I liked the idea, but decided to change it to the autistic infinity symbol (as the puzzle piece is very disliked by proud autistics like myself to represent them).

 



 

The University of Central Missouri mascot with the rainbow infinity inside it.  Another profile picture of mine.

 

 

My latest Facebook cover photo, a charm necklace (that exists only in my head) of an autistic Buddhist, Johnson County Community College, UCM, University of Missouri Kansas City student, environmentalist, Tolkien fan.

 

There is also of course the newest picture for The Autist Dharma.  For more of my drawings, you can see my post from last April here.  Stay tuned.  I'll have some digital art work and multimedia pieces to share with you in honor of this month.  Good night.

 

Belated Veteran's Day Post

Since Veteran's Day is today (or yesterday, but I copied and pasted this from Facebook, fifteen minutes late after my computer lost power), at work we were giving free slices of pie to people to had served in our military. I would go back, getting apple, cherry, peach, and every other kind. At one point, a man said he wanted pecan, and it turned out we were out, but I brought four different kinds of slices and told him to choose whichever kind he wanted, and we kept those up for other veterans, though I kept going back to get more. I realized that giving them the pies wasn't so much a way of thanking them as doing it with so much care and respect. Now I honestly wanted to thank them as my coworkers were doing, but saying, "Thank you for your service," like they did just seemed off to me, and I found myself saying, "Thank you for everything." I realized, a great deal of veterans do not feel like they gave service though I do myself. What I will insist they gave was sacrifice. Service and sacrifice. The difference is subtle, yet profound. I also remembered hearing on the break room TV news sixty-five veterans committing suicide every day, and I know that people who commit suicide, or attempt to go about doing so, are not simply selfish. They believe there is no place for them in this world, which would be better off without them. Yet how can we call someone offer their lives for ourselves (on founded fears or not) selfish? We know that veteran benefits are being cut every day, and the transition to civilian life is complicated and overwhelming. Soldiers are trained to spot enemies, not friends. Soldiers come back having served in our country, sometimes on the basis of ill-founded politicians, and find themselves homeless and starving sometimes, and called lazy and selfish by people wearing yellow ribbons when they ask for the amount of money to buy a soda. The way they served their country is now virtually impossible in civilian life. Some have seen their friends die in combat to save their lives, and wonder why they are still alive. They cannot support their loved ones with the same modes that they have now that many of them are disabled. They know and hate that they have taken x amount of lives, regardless of how many they saved in comparison. The truth is, politicians grow to see soldier's lives as expendable, when they are actually inevitable risks. I hope though, that we will do more than just elect the politicians who will value soldiers lives to never be gambled for unfounded puropses; I hope we create a culture where these politicians will never happen period. This is far more than about any political party, philosophy, religious belief, or ideology. It is about the differences between false performances and genuine ones. Having Veteran's Day parades, tying yellow ribbons, and giving out one hundred free pies is not a enough to show respect. If you vilify a veteran trying their only way to get money, think you cannot extent government funds to help our soldiers readjust, and think you have any notion in mind as to how these people should be a veteran, please do not say you support the troops, because you do not.

Living the Autistic Mythos

Having studied different cultures of the world academically for seven years, I have come to learn how all cultures shape their world view through mythos, or mythology. I had gone to a local community college in my hometown of Kansas City for three years, and after that, I went to school at the University of Central Missouri in the small town of Warrensburg, Missouri, an hour’s drive away from my home, and there I declared and received my degree in Cultural Studies. My current career ambition is writing-novels, poems, histories, philosophy, songs, etc.—but a series of taking several classes just out of pure interest followed by the sudden desire to graduate school with a bachelor’s degree in good time led to me picking a hasty, individualized major, but one that would enrich my world view all the same. During that time, I came to learn about the idea of “mythos.” Myths in this sense do not mean lies or misconceptions. According to Ronald Wright, author of Stolen Continents, myths are “an arrangement of past events, whether real or imagined, in a pattern that resonates with the culture’s deepest values and aspirations…so fraught with meaning that we live and die by them.” These “values and aspirations”—beyond religion, politics, and philosophy--are expressed by different cultures in things as taken for granted as everyday conversation amongst people in each culture. The more I learned about different cultures across the world, the more I began to think of the culture of my own country, and eventually, the culture of the autistic community, at home and abroad—a community and culture that I believe moreover share a common, albeit latent, world view, and the common stories they share reflect this and what it means to be an autistic person. 

                I believe, as other autistic rights activists do, that autism is not something a person suffers from, as much as they suffer from a society that benefits people who learn, live, and process in one way that it does others; that autistic people are not a recent epidemic of vaccines, genetic mutations, mothers over thirty-five, or bacon, but have been around for hundreds, if not thousands of years, as an evolutionary divergent strand of humanity like dyslexics and people with AD/HD, OCD, etc.; and that society needs to change to accommodate our differences, instead of changing our differences to accommodate it. I also realize that every time I see my fellow autistics out there, I share a special connection to them. I believe these ideas mean something to all of the autistic and autism community, even if some do not know it yet. I have met individuals and families taking part in the walks and Light It Up Blue events of the pro-cure organization Autism Speaks, even though they reject AS’s medical model of autism, while wishing to know that they and their families are not alone. In time, I have learned it is my job to show these individuals and families my own way to understand they are not alone, through building connections, planting seeds, and gaining trust.   

These views on the autistic people are reflected in my writing, art, music, and have been for the last five years. In the last seven years, I would undertake many great projects in the name of these ideas, such as leading and starting autistic student unions at these colleges, writing blogs, and speaking to and mentoring autistic youth at summer camps and learning disabled schools. During my lifetime, I have also heard about Autistic myths (both good and not so much)—autism and autistic life in films, among celebrities, historical individuals, across the world and throughout history, fighting for their rights, celebrating Autistic pride, going unnoticed in women and girls, existing in adults. Films from Napoleon Dynamite to Sherlock Holmes to Adam; individuals such as Dan Akroyd, Thomas Jefferson, and Albert Einstein; books such as Roy Richard Grinker’s Unstrange Minds: Unmapping the World of Autism and Steve Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity; as well as issues of autistic adults from employment to relationships to dating; and events such as Autistic Pride Day, Autism Acceptance Day and Month, as well as Disability Day of Mourning. While I certainly do no approve of everything about each “Autistic Myth” I see, I notice how these sociological and cultural aspects of autism have been a part of growing up and living for my fellow autistic rights activists, and I believe over time, these stories, these memes, these perceptions will develop to suit our current needs and ideas. 

When I think of the autistic community, I see we do in fact have our own deepest values and aspirations. Now, while it is true that many autistics will adamantly argue for their autism to be “cured” and wish that they did not live with it, they do so because they have lived a life full of stigma and discrimination, which makes them blame themselves for their own struggles, reinforced by families, schools, and aggressive lobbying industries such as Autism Speaks. Indeed, when people from any culture have been surrounded by people of another culture, they frequently become disconnected from their own identity, just as an American can do if they go to live abroad. But, when I am surrounded by autistics in groups such as the local Autistic Self-Advocacy Network chapter in my area, I feel consistently like I belong, am comfortable, and can express ideas about myself and people like me, which is what it means to be a full member of a particular culture. When I am around neurotypicals, particularly insensitive, domineering, and close-minded ones, I do not feel so comfortable being openly autistic like I do with ASAN.

                I have once heard a saying, “Other cultures are not failed versions of being you. They are unique manifestations of the human spirit.” For this reason, when I think of the Autistic culture, I think of autistics (the autistic community)—proud, self-respecting, and authentic people—and, by extension the people who care about them, such as (potentially) their family members, service providers, friends, spouses, and children, as opposed to groups making enormous profits, saying autism is like a tsunami, car wreck, lightning, or cancer, AIDS, and diabetes combined—groups like Autism Speaks. Their message is simply crass and has no meaning to Autistic culture whatsoever.

                What seem to be common across the autistic/autism community are certain themes, which in fact all seem to make me believe in the idea of an autistic mythos. These include themes such as autism in the media (movies, television, etc.), famous autistic people (Temple Grandin, Daryl Hannah, Andy Warhol), scholarship—learning about autism as a difference and how to better accommodate the needs of autistic individuals and families, and public events and recognition—whether events like World Autism Awareness Day and Light It Up Blue or, on a more positive note, Autistic Pride Day. Seeing autism across different cultures, existing in historical figures, and being masked by behaviors, co-morbid conditions, and medications in women and girls demonstrate to me that our differences can blend in or stick out, depending on the culture and time we live in. From looking at autistic characteristics showing up in film, television, fiction, and video game characters, I realize how my autism shapes the way I see and relate to people. The famous autistic people of history and Silberman’s study of autistic individuals throughout time and space demonstrate that we are a timeless people, and not an epidemic, while contemporary notable autistic individuals make it clear that there are inspirational autistics today, and it is unnecessary to look at history to find them. Autistic adults I have met over the course of my lifetime, struggling with school, relationships, and employment show me how absurd it is to simply wait around for a magic cure to our autistic realities, and need to get a hold of the situation while we have the chance, and thus making the need for any autism cure completely obsolete, as autistic rights activists have been saying for decades. And while some events and public recognition of autism are more positive than some, I recognize that we autistics have the power to join together with the support of our friends, relatives, and supporters who make autistic existence what it is. It is because of my life and education I have had on autism that I am willing to go to any lengths to help my autistic kin, and in that respect, I see what Wright means about how myths are something we live and die by.