Letting Down My Entire... Spectrum?

Today on Geek Feminism's Blog, a post delved into the difficulties of being representative of your entire gender/disability/race and the guilt that arises from taking a breather- Not going on to get your PhD, or anything else. Other examples I can think of, in terms of gender, are choosing whether or not to stay at home after giving birth, or choosing whether or not to have children, whether or not to get married, an absolute plethora.

But the main place my mind went to when reading that was not regarding my gender or sex, but my disability. Every paragraph hit me like a sack of hammers as I remembered all the times I rigidly attempted to be on "my very best behavior" when in a crowd of neurotypicals or a neurotypical-dominated place, like a classroom, a social function, or an awards event. And more recently, I've become active as a speaker on autism, doing local events in my community such as at the children's development center, and hosting my own advice column, "Dear Aspie" on my university's autism club's facebook wall. Sometimes, I have to defer, I love the work, but I don't always know the answer:

So you feel guilty. For yourself, for other people. You feel like changing the world rests in your hands, and you let the world down because you had to say no. You had to quit. You had to hide. You were capable of doing it — that was not in question — but you didn’t want to and you’re worried people will think that was a sign of weakness. You chose not to. And you’re feeling guilty.

Yup. Pretty much. That's how I feel whenever I get a mediocre grade on a test, whenever I needed to drop a class, whenever life got in the way of me doing what I thought was best. Or, whenever I lost my temper. Truthfully, visible signs of my autism didn't bother me. I had no qualms about stimming, or my curious speech or mannerisms, and have made no effort to correct those.

But I worry constantly that it is my duty to be as kindly, charitable, bright, creative, sweet, and articulate as I can muster, to compensate for other autistic people I have met who have made me shudder with embarrassment. On and offline, I've met autistic people who fulfilled every negative stereotype about Asperger Syndrome: Conniving, arrogant, self-serving, cruel, misanthropic, sexually frustrated, and suffering from a ripe combination of poor hygiene and delusions of grandeur. This has led to undue stress on myself as I attempt to emulate what I grew to see as the "perfect" aspie: Humble, quiet, intelligent, gifted, conventionally attractive, and quasi sexually appealing while remaining smartly chaste. Like if Temple Grandin and Miss America were mishmashed together.

I can't live up to that however. But what's more important than discontinuing the act is to figure out: what can I do so that I don't have to feel like I need to follow the act? What steps can be taken to eliminate these negative stereotypes in a way that doesn't leave me drained?

President Aspie: Or, I'm sick of armchair diagnoses

So, Crooks & Liars, a known American liberal blog, posted this podcast recorded by two people known as "The Professional Left", titled, "Hey Obama, Get Your Head Out Of Your Asperger's".

My first and most immediate reaction, which has been my de facto reaction to stimuli as of late, was as follows, "What the everflowing milk of human kindness?!?!"

See, I was confused and irritated, expecting I'd run across a typical "disability as a metaphor" joke that's so common to both liberal and conservative media, but with the liberals I get more annoyed because I expect more from them.

So I listened to the podcast, and shut it off in disgust after the part about Asperger Syndrome was finished. There was no transcript available(If anyone wants to brave their way through the podcast and make one, be my guest, I'll do a proper one later Edit: Lindsay of Autist's Corner did a terrific analysis and transcript here: http://autistscorner.blogspot.com/2010/12/more-disagreeing-by-diagnosing-aspie-in.html), but the dialogue went along the lines of: (highly paraphrased here)

Woman: So I have this theory.... (chatter about anticipating what this amazing new revelation could be)

Man: I'm girding my loins [in anticipation]!

Woman: I think our president has high functioning Asperger Syndrome! It's becoming more obvious now the way he reacts to everything, he's so much like Spock, the Star Trek character, you know? And he doesn't display emotions and he is logical and rational, and so many other traits. And he focuses on the little details instead of the big picture!

Man: Well, that could be it, I mean we understand these traits about Aspergers and that end of the spectrum as being....

[Continue intersliced with boring rabble about Wikileaks, constitutional law, imperial presidency, and not listening to the American people with obnoxious laughter and ham-fisted jokes about nerdiness based on the Spock reference]

I was frozen. There's not much more I can focus on here that hasn't been covered before. Typical Bingo fodder. Comparisons to Spock? Check. Devoid of Emotion Card? Check. Stereotyping all autistics as being uniformly like this? Double check.

But what irked me the most about this is that when the American people were at an all time euphoria about Obama, he was compared to Spock, and Superman, and other idols of nerd culture, but the "A" word never came up. Now, progressives are finding a few walloping things wrong with his decisionmaking and snubbing of progressives, and now it's so convenient to label him with autism or some other type of "disorder" or invisible disability. Disability need not apply to people when they're doing what you think is right, but the moment you find fault with them, disabilities begin to be thrown about, and always the negative stereotypical traits are thrown in too. Never would it be suggested (At least while he is alive, see Einstein and Newton) that Obama has Asperger Syndrome for an exceptional trait which makes him a fine leader. Always focus on what makes them different, not good. Same for Narcissistic Personality, or Psychopathic Personality, Obsessive Compulsive Disorder, or now, Asperger Syndrome. Yay. Or just happily labelling anyone who disagrees with you as part of the Loonie Left, or a Wingnut, or a Right Wing Nutjob, having "Nazi Tourettes", having some type of ADD or ADHD, or a Crazy [Insert noun] or Republitard.

How delightful to know that the mentally and intellectually disabled are so disposable.

For the record, I find it highly doubtful that Obama has Asperger Syndrome or autism of any kind. The closest connection I can find between him and autism is his historic appointment of Ari Ne'eman.

And The Winner Is....

This year, the Young Adult National Book Award was gifted to Mockingbird, a 2010 novel about a girl with Asperger Syndrome.

I was really surprised to read this. Truthfully, I had only heard the news because I was so pleased about Patti Smith's book, Just Kids, winning the primary prize, and read the whole story looking for new reading material.

I haven't read the book, but with so much about autism in fiction being pushed into mainstream culture, I can't help but say how pleased I am. When I was a teenager, there were almost no books with characters, let alone protagonists, that were girls with Asperger Syndrome. If there were books about autism, the ones I read never displayed a girl with autism, it was almost always a boy.

Not much more I can say about that, except that variety is beautiful, and the more books with autistic protagonists we have, the more options we will have, and the more autistic people who read fiction will find themselves represented.

So, a brief salute to The Millennium Trilogy, Mass Effect: Ascension, and now, Mockingbird. May you touch the lives of your readers with autism.

VYou: An exercise in speech

I created my own VYou account today. I signed up for it because recently, I started a local advice column for people with questions about ASD in my town, supported by my local autism club. Immediately after signing up and picking my username though, I became distraught to discover that, since your responses on the videos were immediate, there was no option for creating captioning or subtitles, and you could not put a transcript on the video (That I know of so far). So, I axed the idea of using it for my advice column, because I believe that unless I can make something as accessible to as many people as possible, I shouldn't use it for projects like my advice column.

But now, I have an entirely different motivation for using this website. As you can tell from the videos posted thus far, I do not have a very good speaking voice. Like Temple Grandin, I'm reputed amongst friends and acquaintances for my habit of speaking in a choppy, loud, speedy voice, and repeating phrases and words. This is how I acquire language, known better among the disability/neurodiverse community as echolalia . It's actually suited me rather well when it comes to learning foreign languages; I can speak Japanese and Russian with some confidence, and I hope one day to master those two and take on French, Swedish, and possibly Farsi.

But my speech remains choppy and awkward in English, owing to the fact that I often think in very rapid succession, and I don't always necessarily verbalize everything I am thinking to get from point A to point B. This makes for extremely ripply and clumsy sentences dripping from my mouth on a regular basis. When speaking a foreign language, I have to think carefully about what I say, and therefore often produce much neater, more elegant and compact sentences that can be easily understood.

Essentially, my new hope for this personal project is for me to discover what is so wonderful about speaking my own language (My 'Aspiecious' speech, according to some!) I intend to observe these videos of my unedited and unfiltered stream of thought based on questions asked, and see how this will affect, if at all, the way I use language and speech in English. Will I find my current way more satisfying, or could these insights compel me to slow down my rapid-fire speech?

A very controversial part, to me personally, of the curebie mentality has been the overwhelming desire of neurotypicals to compel autistic people to speak like neurotypical folk- without our characteristic accents and manners of speech, for those of us who can speak and choose to. I'm proud of the way I talk, and I choose to talk on my own terms and in my own way. But maybe my way isn't the best for those who have hearing problems, or may have difficulty grasping my often eccentric vocabulary.

We shall see. In the meantime, feel free to ask me your own questions on the site.

The Aftermath

Autistics Speaking Day went really well. A big thank-you to all who contributed, and an especially big thank you to K. Bjornstad and C.L Becker for organizing the event. Reading all of those amazing, elaborate, well-thought out posts made me feel ashamed of my tiny two-paragraph hack-job, but I have to admit that I was running on empty and extremely stressed out today, so I did my best and I'm still pleased with the results.

The beautiful thing about this is that the original reason ASD (If you're anything like me, you found that hilarious!) was brought about was an idea of people removing themselves from the internet. The idea was to get a feeling for what it is like to be autistic, by being cut off from communication, particularly on facebook.

I have to admit, the first thing that went through my head was, "Well, that will confirm the rumours of Einstein and Newton being autistic, considering that they didn't have internet back in their days!"

In fact, if you apply the logic of logging off of facebook and the web for one day to be equivalent to living with autism, then it's fair to say that apart from the past 20 years, the entire population of human beings have always been autistic! Breakthrough!

Tongue out of my cheek, I can still say that the whole idea stank of disablism and ridiculous disability simulations. I was reminded of one particularly harebrained idea which involved able-bodied individuals using wheelchairs to get around for a day, so they could experience what it is like to deal with wheelchair inaccessible locales. Although that one was considerably more insulting, this one irritated me equally, because not only was it disablist, it was lazy. It's ironic to me that it was most reminiscent of facebook-related "activist" events, such as the bra colour campaign and the new "purse location" one for 2010, or the "X% of people will not repost this" facebook status updates. Whether on or off facebook, it was the same type of armchair activism that I have grown to despise more and more, as I progress through my twenties and see it becoming more and more commonplace.

It does not make you understand what it is like to be autistic if you go without facebook for a day. Nor does posting a colour in your status update save a woman's life or prevent a mastectomy. A click on a petition or a text message is not worthy of recognition as a selfless act.

But do you want to know what would be truly revolutionary and make a genuine difference? It's not as easy as logging off the internet for the day, and it takes conscious awareness on your part: Accept a person with autism for who they are. Do not think of them as savants whose value is worth only what they can give back in recitations of Pi or recognition of difficult patterns. Do not pity us into a corner, and do not place us on a pedestal and expect us to lead examples of virtuous lives.

Treating someone like a human being should not be considered such a radical act, but it is. In the world of blogging, this event may very well be passé within the next hour. But today, while some took the day off facebook, others poured their hearts and minds out. They can give you an idea about what it's like to be autistic. Give them the benefit of a read.

Autistics Speaking Day

Today is Autistics Speaking Day. It was created as a reaction to an Australian group's "Communication Shutdown" in which they were requesting that people 'shut down' their facebooks to understand what it is like to be autistic. There are plenty of reasons why this is ridiculous, and plenty of other terrific bloggers have covered it better than I ever could.

But I'm going to add my own voice to the mix, because no autistic person should go silent when they feel the need to communicate their views.

Today, I did an interview for the local TV news station, to talk about a project that my local autism club, of which I am the spokesperson, was doing to bring about discussion on autism. On Wednesday, this piece will be continued, and on Saturday, it will culminate in us showing Temple Grandin, the HBO film, and having a discussion about autism afterwards.

Not one of the autistic members of the club has been silent while we've been planning this out. We've collaborated, created posters, pitched ideas off each other, discussed the possibility of Closed Captioning in the theatre, and put all of our heads together to create a project we are proud of.

All of this hard work would not have been possible had it not been for the assistance of the internet. We emailed, we designed PDF files of our fliers, and the reporter caught my attention via facebook messaging. It was actually via the internet that I discovered this club.

So, I have to ask: From my personal experience, how does it make sense to bring awareness to autism by shunning the very thing that opened up many an autistic person to new possibilities and friendships? It makes little to no sense in my brain.

And that is all I have to say on the matter.

Why I will not be attending the "Rally To Restore Sanity"

Apparently at my university, there is to be a localized version of Jon Stewart's Rally to Restore Sanity. While the big one is being held at Washington D.C, this one will be held at City Hall. I saw chalk markings indicating the time and place today while walking around campus, and I just shook my head, annoyed.

Sure, I genuinely believe that political discourse has become increasingly uncivil as of late, I despise the politics and actions of the Tea Party, and I watch and laugh at Stewart's show on occasion.

But I'm also a person with multiple mental disabilities, and I don't appreciate conservatism being compared to a mental illness. It not only makes me feel like I don't matter and that my opinions are de-facto unimportant because I'm not "sane", but it also undermines the terror and true threat that these people present to our country and our civil liberties.

I hear it from both sides. Michael Savage thinks liberalism is a mental illness and is not afraid to say so. Many a conservative or moderate has teasingly made reference to "The Loony Left". Wingnut is a term I've heard used freely by both progressives and conservatives of all stripes, with variations abound. I've been guilty of using them myself many times, before I stopped to think about its implications, and I've since slowly tried to eradicate it from my vocabulary.

And in terms of the Rally To Restore Sanity, they've made it out to be a battle cry for rationality, in a world increasingly plagued with irrationality and borderline anarchy.

Well see, there you go. If you're genuinely suggesting to me that my mental illnesses, or "lack of sanity" in such gross terms, means that I am incapable of being calm, rational, or informed about current affairs, do you really think that I'm going to march alongside you?

Better luck next time, Stewart and Company. I'm sitting this one out until you and your writers figure out that people with mental illnesses and disabilities are not disposable metaphors.