December 29, 2011
It’s always hard for me to be back in the Kansas City area, because every time I’m back, yet another piece of prairie or woodland has become a strip mall or zombie clone subdivision. It’s part of the reason I only tend to visit once a year for the holidays, and don’t think I could ever bear living here again.
A few mornings ago, we saw a family of five deer go bounding over the fence and through the backyard of my childhood home; that would never have happened when I was growing up, but they’ve lost so much of their habitat, they have nowhere to be.
This is the view westward from my mother’s front yard, though, and it hasn’t changed much since I was about 12.
Today it’s back on the Greyhound bus for New York, and I’m trying not to think about the fact that I won’t see a bed again for more than 36 hours.
December 27, 2011
I think I never intended to write this post. It’s personal, and it’s a hissy fit, but one I felt a certain responsibility, the more I reflected on it, to transcribe.
I was diagnosed with Asperger’s Syndrome last year, which most of you probably know because I talk about it on Facebook enough, because I decided that it was part of my life that I wasn’t going to make any particular effort to hide, because I had nothing to be ashamed of. (I’d known the truth for several years before I sought out a correct diagnosis; a few people knew, but I didn’t talk about it much, for fear of a lot of things.) I really have no idea what people think of me as a result, because I stopped concerning myself at a pretty early age with what people think of me. Because living in thrall to the opinions of people who don’t have to live your life is no way to live at all.
Anyway, so I’d started to think of it as old news that I was autistic. I’d started to settle in to living as a whole person, without an emotional double life. Then last night, I was rather emphatically asking my mother not to describe a young relative, currently in the process of being evaluated for autism himself, as not having a personality, because such language is often used to justify all kinds of mistreatment and prejudice against us, besides not being true.
“But you’re not autistic.”
Which is where my brain froze up. Because honestly? I don’t know what else I am. Everything comes home to that. Everything. Before I understood what AS really was, I didn’t know what I was at all, except for lost and completely alone in the world.
“I don’t think of you as really autistic.”
This is everything I didn’t have it together enough to say at the time. This is what I’d say going forward:
If you can’t see me as autistic, then you need to revise your view of autism.
I am “not like that kid” you saw who runs around screaming, or who can’t communicate at all, because I grew up. And because we’re all different, because we’re all different people, who cope with unique profiles of challenges and gifts in individual ways. I am “not like that kid,” because, to be perfectly literal, I am not that kid.
We are as unique as the stars. They say autism is a spectrum, but I don’t think that really describes its variety and complexity well. It’s not a simple progression from mild to severe. I often say it’s more like a constellation, or galaxy (which, another blogger pointed out to me today, has the added metaphorical benefit of being a 4-dimensional construct; it changes through time for every person as well). There are people with far more severe problems with independent living than I have, who are smarter, better writers, incredible artists or just incredible people.
I am far more fortunate than many, and not as lucky as others. I know this; you don’t need to rub my nose in it.
If you can’t think of me as autistic because I have so much personality…actually, we usually do.
If you can’t think of me as autistic because you see me as a competent adult, you didn’t know me as a child.
If you can’t think of me as autistic because I’m verbal and communicative…read more about AS. Those things are features of the condition.
If you can’t think of me as autistic because I’m so good at my job…please consider that it’s a job that largely entails “keeping track of everything that no one else wants to” (to paraphrase the college instructor who introduced me to stage management as a career option), organizing, color-coding, and working with a collection of people who are also socially marginalized, passionate, obsessive, highly sensitive, and reliant on consistency and repetitive and ritualized behavior. (Actors, I adore you all so much.)
If you think I can’t be autistic because I’m so good at multitasking, well, I’m not. Good at multitasking, that is…I can’t do it at all. I know I’m taking a certain risk in telling you this. What you see when you see me do my job is the result of copious amounts of planning, mental choreography, scripting, queuing, pre-thinking, mapping out scenarios like computer flowcharts, making Excel spreadsheets, preparation and learning from experience, and excellent assistants being good at their jobs, too. (Stage management and life with Asperger’s are both centered around dealing with a quantity of data that a single human being is not truly equipped to handle.)
You get good at anything you do for a long time. I got good at my life when I stopped trying to live one that I realized I could never have.
If you can’t believe I’m autistic, what on God’s green earth do you think I am? Because I sure as hell failed at being normal.
I’m autistic. There’s not another or a better word for what I am. It’s one I searched long and fought hard for.
If you can’t think of me as autistic, it’s not so much for my sake that I care, but watch out that it’s not because you can’t believe that autistic people can be intelligent, kind, good-humored, good friends, good at our jobs, capable of love, highly-skilled or talented, complete human beings. Because if your prejudice is that autistic people can’t be these things, you take chances for jobs, education, friendships, and quality of life away from autistic people who are a whole lot less lucky than I am.
December 23, 2011
While I gather my wits for a more substantial post, please enjoy this edition of “Headlines that should be from the Onion, but are not.”
“Despite careful calculations, the world does not end.” –New York Times, 5/21/11
“City strewn with perverts.” –AMNY, 6/15/11 (I know the situation isn’t funny, but the imagery is.)
“Girls Meet Bieber in Meeting Brokered by President Obama.” –gawker.com, 6/27/11
“China admits officials cannot levitate.” –New York Times, 6/30/11
“Cowboy monks quit the cattle business.” –New York Times, 8/14/11
“Bisexual men do exist, study finds.” –New York Times, 8/21/11
“Why do college students love getting wasted?” –Salon.com, 8/29/11
“Do we really need a national weather service?” –foxnews.com, 8/27/11 (i.e., the weekend of Hurricane Irene, which swiped the entire east coast of the United States from the Carolinas to Massachusetts and Vermont. Yeah.)
“White House Says No Evidence of Extra-Terrestrials.” –AP, 11/7/11
“Rick Perry fails to remember what agency he’d get rid of in GOP debates.” –cbsnews.com, 11/9/11
“Starbucks toilet mutiny exposes reliance.” –New York Times, 11/22/11
December 18, 2011
Dear friends and readers,
A friend of mine, Salvador Speights, who might be the most brilliant person where food is concerned that I know, is in the beginning processes of launching a podcast project based on food culture and politics, and we are seeking all sorts of people who might be interested in lending a hand, but most importantly at the moment, a website designer. Read more:
I am creating a podcast with the ultimate goal of transitioning to radio. I am looking for creative, passionate people to help lift this project off the ground. We currently have a budget of $200 dollars, but we will be actively fundraising. I need people who are willing to invest their time into the project to build it up to a place where we can start to earn money. Until then, this project will operate on a volunteer basis. I need sound engineers, writers, producers, and web designers. The podcasts will explore contemporary issues regarding food stories. For example, the first podcast will be titled First Meal and it will be discussing the importance of milk, the issues evolving around industrial dairy farming verses alternative dairy, as well as investigating the raw milk debate. We will host interviews with new and expectant mothers regarding breast feeding and the emotional connection created with their child via mother’s milk. Other podcasts will include, but are not limited to, politics, economics, popular culture – how do these transitory climates interact with our permanent necessity for food and sustenance? Each individual podcast will explore topics of food regulation and legislation, agriculture, personal stories and more. If you fit the creative, passionate, food lover we represent.
If anyone’s interested in getting involved (particularly with website design/building!), or knows someone who might be, please get in touch with me, or the Facebook page of the Alvarado School for Sustainability and Community Development.
Thanks, and hope you all are having a happy holiday season!
December 7, 2011
…from my neighbors in Manhattan Valley…
I have mentioned that I love my neighborhood, right?
December 6, 2011
I just got home from the New York Public Library, where I went to hear to Josh Ritter, Wesley Stace, and Steve Earle discuss the relationship between music and writing. All three were lovely and marvelously intelligent, and though I went to hear Josh (of course), I think it was Steve Earle who said the most intriguing thing of the evening:
“What separates us from animals is not opposable thumbs; it’s that only humans make and consume art. That’s what separates us from the beasts.”
And while I don’t want to denigrate the quality or value of animals’ emotional lives…I suspect he may be right. I don’t tend to believe that humans are vastly superior to the rest of the animal kingdom in morals or capacity for empathy or emotional complexity…but I cannot think of another species that produces and consumes art for art’s sake.