19 June 2012

The Other Side of Disclosure

It is natural and normal to be Autistic. I am not ashamed of who I am. But before jumping to a quick and easy wish of "Happy Autistic Pride Day," I want to take a moment to recognize all of the Autistics still struggling with internalized ableism and self-hatred, all the Autistics who still fear the negative and damaging consequences if they were to "come out," and all the Autistics who aren't yet proud to be themselves.
For you, I offer my quiet encouragement, my loud voice, my loud hands, my energy and fire, my will and drive, my steady persistence, my growing and learning patience. For you, I bare my secret sorrows, my debilitating fears, my creeping anxieties, these things I know you share.

I have been where you are now. Sometimes, I return to visit for haunting hours or days.

Thousands of us have walked the path where you now find yourself. We have suffered the same cutting words that wound you, the same biting humiliation that stings your pride, the gnawing sense of worthlessness that reminds you ever so often of its presence.

We have languished on the other side of disclosure, stealing brief glimpses of those on the other side, and now that we've crossed over, we've come to age among new and different challenges to our very humanity and right to existence.

Ableism doesn't go away on the other side of disclosure. It simply changes form.

Now, we are the ones who force smiles through tears at baby voices and patronizing do-gooders and well-meaning strangers who've never heard of postcolonialism and patriarchy and disability rights. Now, we are the ones who sit silently through torrents of abuse from fundraising campaigns and special education teachers and neighbors with children. Now, we are the ones who shut ourselves from the things that used to bring us comfort for fear of encounters with strangers that will hew scars anew into fresh gashes.

We are no longer invisible, but we might as well be.

They talk about us without us at conferences that come a dime a dozen, with worry lines and grave intonations as they discuss tragedy and devastation and mystery and health crisis. They glorify those of us who've learned over long and hard years how to cope with anxiety and sensory overload and ableism as somehow recovered or overcome or triumphed. They call us high and low functioning, and ignore our individuality in favor of neat checkboxes on photocopied forms. We are too able to be disabled or too disabled to matter.

They want us to stop existing, but what kind of existence do we have in a world that does not welcome us?

We who have crossed over to the other side of disclosure have not ceased to exist. We have merely changed in the eyes of those around us.

There is no paradise or haven, no Elysium or Utopia waiting for you on this side. Keep no illusions, no delusions. There exist only the barren promises of equal rights that we who've already crossed over know to be abandoned and unfulfilled.

But this will not last forever. They will not always keep the status quo as it exists now. Those who want us to come into our own, those who want us to take the helm of our own battles against inequity, those who understand that our struggle for civil rights is not unlike their own -- they are growing in number.

We need you, your voice, your ideas, to breathe fuller and deeper life into our community and our movement. We cannot demand change alone because it is easy to ignore an individual. It is difficult to ignore a community united by common interest, even if diverse in innumerable other ways. The fabric of our society is ripe to be dyed again, re-woven, knitted into better and stronger patterns.

You may not be proud of yourself yet, may not yet possess the will to emerge from behind the veil and cross over to the other side of disclosure, but given time, as much as you need, you will. Autistic Pride Day is not so much about those of us who've already crossed over as it is about those who have yet to do so. We who celebrate proudly serve as the reminder that, little by little, we are taking down bricks, and bricks will become whole walls torn asunder by the growing chorus of our voices taking charge of our own movement -- we are the reminder that you who are still waiting are awaited.

Pride is evidence that we exist after all.

16 June 2012

My dog isn't named Autism



(And yes, for the record, I did this entirely on the computer.)

Text image description:

The banner says "Autistic Hoya Illustrated," with the word "Illustrated" appearing inside an arrow pointing to the right-hand side. Beneath the header, in a tiny font, it says "Lydia Brown 16 June 2012."

On the left-hand side, there is a large figure in approximated pencil and crayon, with black hair, glasses, a blue-gray shirt, khaki pants, and black shoes, arms crossed, with the caption "me" pointing with an arrow toward the figure. A dialogue bubble says, "I'm Autistic, okay? Let me make this real clear to you." The word "Autistic" in that bubble is circled in an approximation of red pencil.

To the right of the large-figure, there are three smaller-scaled versions of the identical figure.

The first is standing to the viewer's left-hand side of a yellow house with a red door, two first floor windows on either side of the door, three consecutive second floor windows, a gray roof, and a dark red chimney. The caption beneath this figure says, "No one in my family is named Autism. I'm not 'living with Autism.'"

The second is standing to the viewer's left-hand side of a mostly white dog with a cream spot on its back and cream-colored ears, lying in a curled-up position with a dark red leash going to the figure's left-hand side. The caption beneath this figure says, "My dog isn't named Autism. I don't 'have Autism.'" There is an arrow pointing toward the dog from beneath it with the name Béla written in an approximation of pencil.

The third is holding in its right-hand (viewer's left-hand side) a bright green bag, like the type from retail clothing stores. The caption beneath this figure says, "I don't carry little bits of autism around with me. I'm not 'a person with autism.'" There is an arrow pointing from upward down toward the bag that says "no autism here" in an approximation of pencil.

At the bottom of the image, there is a fifth figure, the same person depicted in the previous four, but this time in a new iteration. The figure appears to be frenetically running and flailing the arms, with both arms waving wildly while the eyes look behind the figure (to the viewer's right-hand side) where there is a hand holding a long brown stick. The dialogue beside this figure reads, "And I'm not being molested touched by something called Autism. I am not 'touched by autism.'" The word "molested" is displayed with a strikethrough as if to indicate it was redacted as a word choice and replaced with "touched."

Apparently a drunk

They teach you in customer service that the customer is always right. They're supposed to smile and greet you kindly even if they've had an outright crappy day. They're supposed to handle your requests with ease and efficiency, and where necessary, with discretion and respect.

But we've all had or heard plenty of bad stories about encounters with people in customer service jobs.

I used to laugh at them, never for a moment imagining myself in the middle of one.

Let me try to explain what happened. (It's taken me this long to write about it, because it's taken me this long to laugh about it. And I've actually taken much of it from the logs of a conversation I had over text explaining what had happened while still upset.)

A few months ago, I was in downtown D.C. for the National Day of Mourning organized by Zoe Gross in memory of George Hodgins and other disabled people murdered by family or caregivers. Among the dozens of disabled activists and allies who came was Cara Liebowitz of Butterfly Dreams, a friend from out of state who has cerebral palsy and walks with two crutches.

I was going with her back to the hotel where she was staying several Metro stops away, and we went to the station nearest to the vigil. I have trouble with escalators for sensory and spatial reasons, and generally avoid them wherever necessary. We spent maybe half an hour running between K and I Streets along 17th (for those of you who know D.C. at all) and couldn't find the elevator.

Cara and I went to the window, where I asked the woman sitting in the booth where the elevator was located.

"Your friend needs the elevator?" she asked, and momentarily taken aback, I replied, "No, I do." A look of confusion crossed the woman's face as she glanced at Cara and her crutches and then back at me. "YOU need the elevator?"

Cara tried to interject and prevent an unnecessary misunderstanding by saying, "Okay, we both need the elevator," even though she can actually use escalators with her crutches.

"Are you drunk?" the woman asked me, and for several seconds, I'm sure, I stared in shock.

"No, I'm not drunk," I replied, but she very nearly interrupted me.

"I think you're drunk; you're incoherent. I can't understand you."

"I have never been drinking in my entire life," I said, "never mind drunk." In fact, I have taught English as a Second Language for over three years; I'm pretty sure that I'm articulate and enunciate when I speak.

"You're drunk," said the woman. "You're drunk." She was insistent, her voice forceful, firmly shutting down any denials or attempts to redirect.

"I'm not drunk; I'm developmentally disabled."

There. I said it. I don't do that. I don't normally pull the disability card for fear of stop making excuses and you don't look disabled and oh, I'm so sorry. But I said it because maybe it would be the only way to get her to stop. And she kept insisting that I was drunk and continued to be condescending and rude to me, and very much talking down to me, making me feel like a criminal or as though I had something to be ashamed of for doing something wrong.

And then in the commotion I somehow lost my SmartTrip card, which is the stored value card you use to pay for the subway and the bus in the D.C. metro area. They cost $5 and I had maybe $8 stored on the card. And it went missing.

You swipe your SmartTrip card twice, once when you enter and once when you exit, because fares are calculated based on how far you went as opposed to charging a flat fee for riding the subway or bus. So when we finally arrived where Cara was supposed to go, I had to explain to the guy working at that station that my card was now missing.

"Okay," he said, "you're going to have to pay the $5 for a new card." I think I repeated part or all of his question, because he took a defensive tone and said, "I'm sorry; that's just the policy. I don't make the rules."

And then I had a public meltdown. I was crying in public. And I did become incoherent then.

And Cara tried to help. And she said, "The woman at the other station was very mean to us."

And the man said, seeming a bit defensive, but obviously struggling to maintain a calm tone of voice, "Well, am I being mean?"

And I said, "No, but I'm upset and I'm clearly not communicating well" while sobbing, probably not very intelligible at all.

And he was nice about it and decided to let us go through without paying.

After waiting half an hour for Cara's father to take her back to the hotel, I went back. And I wanted to look for my card and ask if anyone turned one in to a lost and found. But there was no way in heaven or earth that I was talking to that woman alone.

So I called four other people from the vigil and asked them to please come from the restaurant where they'd gone to eat to the station to be there with me as support while I asked the woman about my card. Two friends came while the others stayed at the restaurant.

And apparently the two who had stayed were mildly annoyed at the two who came to get me because the restaurant was closing at ten and it was already far past 9:45pm.

And by the time they found me (I accidentally gave them the street intersection at the other exit from the station), the restaurant was closed and the two at the restaurant had been kicked out, and were more upset.

And then when the two friends found me, they went with me back to the booth where the same woman was there. And she gave me this scathing look, staring down her nose at me, as she said, "So you managed to get back," as if to suggest that because I was so apparently drunk, it was some kind of miracle that I had made it back to the station.

And one of my friends asked her about my SmartTrip card, but she said no one had seen one. (And I'd looked throughout the station, but hadn't found one. Eventually, several days later, I ended up having to buy a new one.)

After we left the station, one of the friends became very upset because he'd left his stuff in the restaurant. So he ran far ahead of the other friend and I who walk much slower.

And then when we finally caught up, he had a panic attack and flipped out and yelled at me, which always triggers me into a panic and acute stress reaction. And he swore at me, which also upsets me.

And then a stranger approached all five of us and thought we had spilled out of a bar and were having a bar fight. He kept asking if we were drunk and which bar we'd come from.

So two of the friends were trying to explain to the stranger that we're actually all friends and not drunk but Autistic so please go away, but he wouldn't go away. And finally the angry friend stormed off, and the two who'd stayed at the restaurant felt bad for the way they'd spoken to him over the phone earlier.

And then I realized it was 10:30pm and I was stuck without a way to get back to Georgetown without the risk of being mauled, mugged, or raped by random drunks or rapists. And I was still starving because I've never really eaten that day either. And by the time I returned to Georgetown, the dining hall was closed.

09 June 2012

The Dangers of Misrepresentation

Anders Behring Breivik, the Norwegian terrorist gunman who killed seventy-seven people in one day last summer, appeared in court yesterday morning as a psychiatrist declared that he likely "suffers" from Asperger's Syndrome and Tourette's Syndrome. One news article claimed that "Asperger's is a developmental disorder on the autistic spectrum that often is characterised by a lack of empathy."1 Another article paraphrased the psychiatrist and wrote that "Norwegian mass killer Anders Breivik has a rare, high-functioning form of Asperger's that has left him incapable of empathy or real friendship."2

And so, it is happening again. Those who write such news articles fail to understand the devastating and frightening impact that their words have on our lives. Language is imbued with power as it both reflects and shapes the society in which we live by creating rhetorical constructions that we readily transform into objects of presumed fact. People study this phenomenon in graduate school, and analyze it with the same scientific eye applied to mysteries of genetics and quantum mechanics.

The representation of disability in the media and in popular culture has a profound impact on cultural perceptions and prejudices, attitudinal barriers to equal access and opportunity, service provision, and the individual self-concept of millions of disabled people. Ableism inherent to the language used to represent disability and disabled people readily seeps into attitudes and actions directed toward us, leading to increased stigma, prejudice, bigotry, and discrimination on the basis of disability.

Although even a peer-reviewed paper published as early as 19913 found no evidence for any correlation between violence and Asperger's Syndrome— further finding that the incidence of violent behavior in those with Asperger's is lower than the incidence in the total population—the media has continually and repeatedly conflated being Autistic with a propensity toward violent or criminal behavior. Because of the fallacious and damaging assumptions still widely held today that Autistics lack empathy, do not recognize that other people have minds, and are incapable of expressing emotions, especially concern for others, it is very easy for the uninformed journalist to hear "autism spectrum disorder" in reference to a criminal defendant and jump to the unfortunate conclusion that serial killers, murderers, rapists, and terrorists must be Autistic because of their apparent lack of empathy for others and any other traits that fit neatly onto a checklist of Stereotypes about Autistics.

Of course Autistic people are capable of committing violent crime, but it is in no way a reflection of their identity any more than when Jews, Blacks, or Muslims commit violent crimes. The neurology of an accused criminal defendant generally has little to do with the actual meat of the accusation and everything to do with ableist attitudes and legal defense strategies. When journalists write with obvious fascination and perverse curiosity about accused violent criminals and when those same journalists attribute every known characteristic of the accused to autism, they are painting a very clear picture for the public— Autistic people are dangerous. Autistic people are violent offenders waiting to happen. Autistic people are the psychopathic murderers of horror movies who are completely incapable of recognizing that other people have lives and minds, and who are therefore capable of committing heinous crimes that any good, sensible, non-disabled person could not possibly commit.

This troubling trend exists not merely in the mainstream contemporary media whenever a particularly egregious case of murder or rape comes to trial, but also in the scientifically questionable practice of posthumously diagnosing prominent historical figures as Autistic— a number of historical criminals, mass murderers, and serial killers have been speculated to have been Autistic for many of the same reasons given when journalists speculate about contemporary criminals, including reasons that lack any basis in reality, such as false stereotypes and misconceptions about Autistic people.

This concept is not new to autism nor is it new to the present age. All marginalized and underrepresented groups have been subjected to the cruel process of othering, much of which is defined by the lengths to which a society will go to demarcate a marginalized group as an Other, not worthy of the same life, not worthy of the same rights as those who can fit into the privileged mainstream. Privilege is everywhere in journalism; it is a hallmark of the successful, well-read news media, and always has been. Most privilege is subtle and unrecognized by those who possess it, but its insidious influence taints journalistic objectivity with the cultural baggage of isms that demonize and dehumanize.

Those who report the news have a duty to report the facts, to make every effort to educate themselves about the dangers of misrepresentation, and to represent the subjects of their writing fairly. Until our journalists learn that their language can have significant and severe repercussions for the lives of the people whom their language maligns and misrepresents, we will continue to face attitudinal barriers across all spheres of society that have been reinforced by the imagery and language used to describe us and construct perceptions of who we are and what our disability means. We will continue to suffer the consequences of dangerous words.

For as long as journalists conclude that every violent criminal must be "an Asperger's sufferer" or "autistic and incapable of empathy," we will be viewed through the lens of aberrations to the moral fabric of society, potential mass murderers and rapists waiting to be unleashed on an unsuspecting public. For as long as journalists conclude that every parent or caregiver who killed an Autistic family member was a loving, caring individual who "snapped" in the heat of the moment because of the stress of caring for a disabled person, we will be viewed as tragedies and burdens to society whose lives are expendable and subject to the caprice of those who are "heroic" enough to tackle the "burden" of taking care of a poor, helpless individual.

For as long as journalists unquestioningly accept untrue and dangerous stereotypes as truths, we will be seen as less than people, less than human, our lives not worth living or protecting, our very existence a barely tolerated abomination. And that is unacceptable.


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1 "Expert says Norway gunman has Asperger's, Tourette's" ninemsn. 9 June 2012. <http://news.ninemsn.com.au/article.aspx?id=8481127>
2 "Mass killer Breivik may have rare forms of Aspergers and Tourette’s syndromes, says Norway's leading psychiatrist" Daily Mail. 8 June 2012. <http://www.dailymail.co.uk/news/article-2156530/Anders-Behring-Breivik-rare-forms-Aspergers-Tourette-s-syndromes-says-Norways-leading-psychiatrist.html?ito=feeds-newsxml>
3 Ghaziuddin, M., Luke Tsai, and N. Ghaziuddin. "Brief Report: Violence in Asperger Syndrome, a Critique." Journal of Autism and Developmental Disorders 21.3 (1991): 349-54. Print.