Thursday, December 08, 2005

Terminal Disasters and Social Catastrophes

This post is dedicated to the memory of Rigoberto Alpizar, the American Airlines passenger who was shot by air marshalls who misunderstood his anxiety as a terrorist threat.

• • •

In the public and professional part of my life, as a sociologist and cultural critic, I sometimes find myself speaking on panels or giving lectures. On Wednesday night, just shortly after Rigoberto Alpizar was gunned down in an airport skywalk when air marshalls misunderstood his frantic bipolar behavior as a sign of a terrorist threat, I was giving a talk about violence and representation. Completely by coincidence, my talk included another story of an airport terminal disaster, though admittedly on a much smaller scale.

In spite of my usual practice of keeping a firewall between my personal and professional work, I had decided to talk about the sorts of social catastrophes that those of us who have children on or near the spectrum are well-acquainted with: those public meltdowns that look so violent, but have within them so many microinteractions of interpersonal violence and an enormous backdrop of institutional violence. In memory of Rigoberto Alpizar, this is the text of that talk, annotated and edited for the blog. May such a fate never befall another person.

Trauma and Violence Talk
The Drawing Center, December 7, 2005
Sponsored by the NYU Institute for the Humanities and
Research in Trauma and Violence
Organized by Shireen R.K. Patell, moderated by Avital Ronnell

Thank you, Shireen and Avital, for inviting me to be part of this panel. Looking around the room at this exhibition, and listening to the remarks Luiz and Patrick made, I am reminded that violence and trauma come in all shapes and sizes. There are massive traumatic events that we typically call catastrophes—the war in Vietnam, so movingly represented in this exhibition, the current the siege of Iraq, the disasters of Katrina and last year’s New Year’s tsunami, the events of September 11th, 2001.

At the risk of doing exactly what Patrick has warned us about—of indulging in the displacing metaphor of everyday life as a battlefield, of making equivalences between everyday personal disasters and the wholesale slaughter of war—my remarks this evening will be focused on a somewhat smaller scale, on a more intimate set of concerns, on what those of us who have family members with neurological differences have come to understand as “social catastrophes.” My use of the word “social” is not academic. I am not using this word in the social science sense as “in contrast to natural or economic.” Rather I am using “social” in a more vernacular sense: "social" in terms of the incapacity to conform to social conventions, and all that that can precipitate.

I’ll offer an example of a social catastrophe in the form of a story. The story involves a 4-year-old girl, her mother, a map, a telephone, an airport baggage claim area, and the numerous people who circulate through such a space, including, but not limited to the police, other passengers, taxi dispatchers, and local tourism officials.

The mother of this story is me, and the four-year-old girl is my daughter in the year 2002.

It was August and we were exhausted from months of navigating through the disaster assistance bureaucracies associated with the events of September 11th and the educational and therapeutic bureaucracies involved in caring for a child like sweet M. My doctor, only half joking, prescribed a vacation in lieu of inpatient care at Bellevue. So we found ourselves in the airport in St. Thomas after a long set of flights that had been many times delayed. We were tired and hot, and waiting for luggage that seemed to be even more delayed than we were.

Sweet M. watched with rapt attention as each piece of luggage appeared from behind the rubbery black slats that separate the St. Thomas tarmac from the sweltering terminal and the conveyer belt that snakes through it.

She was counting each bag. We were well into the twenties and our bags had still not appeared. Soon she was reaching out to touch each new piece of luggage as it slipped by. Touch, count, touch, her own personal blessing.

Our bags were nowhere in sight, and with each touch she was leaning closer and closer to being swept onto the conveyor belt, lost as she was in the rhythm of the bags and their magical appearances—the-now-you-see-it, now-you-don’t of Freud’s fort-da, only here it was automated, to her complete delight.

Her father was anxious that she’d be pulled onto the belt; he motioned me to move her back.

A hurried passenger grabbed for a piece of luggage and bumped into her. I glare at the passenger. Watch out, I’m thinking. For Christ’s sake. Watch out. You might imagine that this thought was simply one of maternal protection—don’t knock my kid over—but I’m worried about more than that.

“Come on, honey. Let’s go get a map,” I say.

“No-no-no. Bags, mama. Bags.” I could see her starting. She has many fewer words that your average four-year-old and, perhaps as a consequence, she also has what her neurologist calls “poor frustration tolerance.”

“Come on, bunny. Let’s get a MAP.” Although she is four, I pronounce “map” with the utter enthusiasm one uses for coaxing a two-year-old. I act as if a map were the best thing ever—something that would rival her other favorites: vanilla ice cream or the g-forces of an amusement park ride.

I take her hand. “MAP, I say, map.” She reluctantly agrees.

I realize at once that I may have made a mistake. In the management self-help books that I know so well from my other research, readers are told to manage expectations--to “under- promise and over-deliver.” I fear I may have overpromised. I think now that this map thing had better be good . . .

Across the small terminal there is a visitor’s center—a cubicle where a tall, white, middle-aged man wearing aviator glasses sits perched on a stool, ready to hand out maps and tourist information.

“Can I help you?” he asks.

“Yes. Can we get a ferry schedule and a map?”

“Sure,” he says, and starts to hand me a map.

M. suddenly looks panicked.

“I want a map, I wanna map,” she exclaims in that excruciating voice that makes adult wince.

The man stands up to his full height, towering above her, and brings his thumbs to his ears, wiggling his fingers like the antlers of an elk or moose engaged in a display of dominance. “I wanna map, I wanna map,” he mimicks her.

With this, she unravels.

“I wanna map, I wanna a map,” she screams back at him. The sound pierces the terminal. She has a scream that will sear the myelin sheaths off the nerve-endings of any hearing person in a quarter mile radius. When we’d first left the hospital of her birth, the nurse had said— portentously as it turned out—“Good luck, you’ve got a screamer.”

“I wanna map, I wanna map,” the tourism representative continues his mimicry. We have been working for a full year in speech therapy to un-do M.’s own tendencies to echolaliac speech, but there is little I can do about this man, goading her on.

“Just give her the map,” I say, my voice slow and low, nearly a growl.

The man sitting under the Welcome to the US Virgin Islands sign flashes me a look that telegraphs “Get your spoiled brat out of here.” But he hands her a map. I thank him and we hurry out of the visitor’s center. M. is clutching her map, methodically tearing it into tiny pieces that leave a trail behind us through the terminal.

F. is still waiting for the luggage to appear. I signal him that we’re going to the snack bar. I’ll get her a Sprite, I think. A Sprite and popcorn. Clear food, and white food, are the only things she will eat, not just at this snack bar, but anywhere. The luggage eventually arrives. F. somehow manages to stack it all on our luggage caddy and joins us at the snack bar.

“You stay with her,” I say, “I’ll call the hotel.” I turn to M. and say, “I’ll be right back.”

She looks bereft and starts again: “I wanna go I wanna go.”

“Okay,” I say. “Come on then.”

The pay phone isn’t far from the snack bar. M. loves phones, pay phones in particular. In fact one might say that she is obsessed with them. When we walk along the streets of the city, she stops at each one, picks up the handset and carefully selects her numbers. She doesn’t speak, but listens intently to whatever the recording tells her: that her call cannot be completed as dialed or that she should please deposit 25 cents to make a call.

Here, at the pay phone in the St. Thomas airport, however, there is another problem. The payphone is at the height of an average standing adult. Apparently the Americans with Disabilities Act hasn’t yet inspired them—or required them—to lower it to the height of wheelchair users and four-year-olds. She can’t reach the phone and she’s starting to lose it again.

“It’s okay, it’s okay,” I say, “We’ll get a chair . . . CHAIR.” I motion to the snack bar, and she and I retrieve a chair. She climbs up, visibly relieved that she can reach.

I let her put the coins into phone. She listens with satisfaction as each one drops, then I start to dial the number.

“I wanna do it,” she says.

“ Okay, okay,” I say. One by one I read her the digits of the hotel’s phone number and she slowly and carefully selects each one.

She is holding the receiver. I can hear the line is ringing and someone answers.

“Honey, Mama needs to talk on the phone.” I reach for the receiver.

“No no no,” she screams. “I wanna talk. I wanna talk.” She bangs the handset against the phone’s housing.

At this, a uniformed man, short and squat, charges toward us, shouting, “Woman, control your child. Control your child right now. WU-MAN, control your child or I will call the police.”

One of the things that M.’s psychologist Monica has told me is that when children with autism and related disabilities panic and tantrum that it is important to think about them as terrified mammals, and to give them space. Don’t startle them. Stay close, but not too close. If you are too close, she says, it boosts their adrenaline production, and increases their panic.

But it is much too late for safe spaces. She is now in a full panic, startled by the rush of this man shouting at me and at her. By now she is screaming and flailing. I pick her up to carry her away from the phone, away from the airport guard yelling at me, at her, at us. F. has gathered the luggage and moved toward the taxi stand. We have to leave. We have to leave now.

She’s screaming, “Let me go let me go let me go”—writhing in my arms as though she is seized by some spirit. She screams, “Help me, help me, somebody, help me, help me, anybody, help me.” I think it must look as though I am abducting her. She scratches at my face and draws blood as I navigate my way to the taxi stand. A bystander yells, “Hit her, just hit her.” The taxi dispatcher shouts “Just hit her.”

I can’t hit her. I don’t hit her.

A woman sitting on a bench says, “Lady, your kid got somethin’ not right with her?”

If it were today, and not 2002, which was early in our adventures with M., I would reach into my pocket and take a small card that says:

What you are witnessing is a child with autism. This child is not a brat, does not need discipline, and we are not bad parents. Autism is a neurobiological disorder that makes children behave in ways that most people don't understand. People with autism are often confused and upset and react in ways that are socially inappropriate, such as a tantrum. Please be patient while we teach our child how to function appropriately in the community.

Such a card does actually exist—it is sold by Autism Link, a group that advocates for autistic individuals and their families. Of course offering this label in M.’s case would not be technically accurate. Despite having many features of children in the spectrum, M. has never qualified for a full-fledged autism diagnosis. (See My Kid: Autie or Not.) But accurate or not, such a label can go a long way toward quelling the squall of the social catastrophe. The bystanders can walk away, perhaps they will be shaking their heads, but they can walk away, confident that there is a category to contain what they have just encountered.

Much has been written about the violence of naming, as well as about the social construction of diagnostic categories, so I will not rehearse those arguments here. You know the names and the arguments: Levinas, Derrida, Delueze, Foucault and our own Avital Ronnell among them. Rather, I will propose that the diagnostic category, while it produces all sorts of violence, also attempts to frame and contain eruptions that, while not always in themselves violent, as this one appeared to be, are nonetheless deeply disturbing. Declaring that someone is autistic is a sort of social remedy . . . while it may be a disservice to the complexity of that person’s experience and neurological particularities, it is also a palliative . . . a remedy for the discomfort of difference.

In English the words that are most frequently deployed to contain such eruptions begin with the letter D. One is diseased-disordered-disabled-disturbed-demented-deranged-or, in the case of our daughter, developmentally-delayed. One is diagnosed, and, it is hoped that, through and across (dia=Greek for through and across) this knowledge, this gnosis, the person and/or their symptoms, can be contained and often constrained.

But M.’s symptoms have defied containment, and she has often refused to be constrainted. Instead of one diagnosis, she has eleven, each of which describes a features of her behavior and disposition. Indeed, her psychiatrist—who is as fine a physician as any in the city—was once pushed to offer a Dx of autism, and deflected it by calling her “spectrumy.” Not a technical term, to be sure, but certainly an excellent volley.

Why would one want to deflect a diagnosis of autism, if it were accurate? The answer is simple. When this medical term is transposed into the world of education and social services, it has implications for how one will be seen and served. I am told by the social worker and advocate who has helped in our school search that in the New York City school system, a label of autistic assumes severe cognitive impairment, what we formerly have called retardation. Although this is inaccurate—autistic individuals are often remarkably intelligent and insightful—a diagnosis of autism could, even today, consign her to a warehouse rather than an education. On the other hand, I am told by autie activists parents, that should she require Social Security Disability because of the challenges that such a neurological disposition presents, she would be be ineligible for such assistance without the autism Dx. Accepting a label for a child, in these worlds, becomes an occasion not only for managing expectations, but also for limiting possibilities.

And for those of us who are interested in fostering tolerance for neurodiversity—involved in the emerging movement of activists advocating for social acceptance and reasonable accomodations for those with neurological differences—there is the question of whether and when one should be “out” about being “aut.” [See Kristina Chew's dazzling reflection on being "aut."] To claim the name displaces the stigma—as in other social justice movements—for example, the LBGT movement, with its embrace of tranny or, at earlier moments, dyke. If enough people are out about being autie or aspie (the autistic community’s self-naming for persons Dx’d with Asperger’s Syndrome), then there is the possibility that the practices of warehousing, exorcising, or sedating autistic children with neuroleptic medications will rapidly become obsolete.

Autistic adults (for example, Temple Grandin and Donna Williams) who have written about their own perceptions, describe their thinking processes as lacking in the capacity to generalize. While they may have a full array of particular images in mind that are tagged with a single label, for example, with the label “chair,” for the autistic individual there is no generic chair, no general principle of “chairness.” It seems that for autistic individuals that there is no Platonic ideal, of “chair,” or of anything else. Grandin has a remarkable passage in her book Thinking in Pictures where she describes her process of designing a cattle processing plant as one of sorting through hundreds of thousands of images that she has in her memory and then putting the pieces together to create a new blueprint.

For autistic thinkers, it seems, all the world, and everything in it, is particular. This would, in part, explain the autistic person’s need for routine and order, and the autistic tendency to become easily overwhelmed by new sensory information. If, for example, every time you came into a room you encountered that room and everything within the room as perceptual information, rather than as phenomena subsumed into general categories, life would be extraordinarily overwhelming, however beautiful, terrifying, and dangerous.

There is a violence in naming, and an even greater violence in generalizing, as those of us who are neurotypical are prone to do. Tonight, at some risk of appearing idiosyncratic and personal, I have tried to move from the particular to the general, to find the whole of the world in a single aspect, as the sociologist Georg Simmel would urge us to do. One can hope that if one is precise and particular enough, that one can move toward theory that is well-grounded enough to honor and encompass the particular, the peculiar, and the rare, in both neurology and elsewhere.

4 comments:

Moi ;) said...

You need to get that label for her. If for any reason she would need assistance later in life, she won't be able to get it. THAT is more important than anything in the long run, because you never know what can happen to you. That bus could come around the corner any day....

My son is also on the "edges" - he has Asperger's - and before he had that label, we could get Nothing in the way of social skills services in school. He was 10 before we got it. That is WAY too late to be getting started.

PA sounds like it is the exact opposite of NY. Maybe (and I usually don't suggest this) you need to get out of NYC - or go private/homeschool/cyberschool - especially having the label is going to crucify her with regard to the district. You can't risk her future because of moronic school bureaucrats. I hear NJ has a lot of good options as far as schools go.

As far as the insurance goes - PA has something called the Medicaid Loophole card, which pays for a lot of therapies and medical things that many private insurance companies won't pay for. Those who have it are able to automatically go into the system when they turn 18. I think NJ has something like this in the works, too.

We are lucky, we have never needed that Card from AutismLink. I think it's a bit long-winded for us, my son didn't have meltdowns. (Then again, I'd rather just say "bite me." ;) The Map thing, though, is SO familiar, lol. And if you look on my blog, you'll find a post somewhere about his yelling for a black man in K-Mart....!

Kristina Chew said...

You say here so many things I've had running through my mind these past few years since the word "autism" thundered into our lives. (Charlie was not a "screamer" but was born with big feet which have led to him, as predicted, growing into a very large child at a relatively young age.) Though we are "aut" and have trained ourselves to be prepared for catastrophe at any moment--as much as one can be--often it's words that can cause real hurt, even a discussion that becomes a raging debate about a word like "cure."

My husband can relate to the "people may think I am abducting this child" story----had to do fallout from a trip to McDonalds---

Anonymous said...

I just wonder- why would you thank some terrible human being for a map when he did what he did to your child? You are an amazing person- and I cannot imagine how you could keep it together with all the negative things people were throwing your way. A four year old throwing a tantrum is a spectacle- but it does not warrant a security guard.

kyra said...

this is just brilliant and startling and moving. thank you for posting it.