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08 February 2016 @ 02:29 am
Furies Ride the Shuttle  
In Greek mythology, the Erinyes (Furies) are "the angry ones." They are chthonic (underworld) deities whose purpose is to punish crimes against the ancient "natural order": young against old; child against parent; host against guest. The furies are so terrifying that they are seldom called by name. The title of Euripides' play The Eumenides is a euphemism: "the kindly ones."

In my Christmas letter, I included a link to a video of me performing my latest work, "What is the Matter?" Apart from any question of poor judgment (guilty!) what has troubled me in some peoples' responses is what I would call a one- dimensional way of thinking about the subject of the piece: two points (terminals) linked by a shuttle. There is no place in the middle, much less a second or third dimension.

The title of the work is meant literally. What is the matter: with my "hands," with my arms below the elbow? What does it feel like? What is it about this combined disability and deformity that feels so bad? Because it does feel bad to me, in a physical and physiological way, the imagery in the piece is dark and disturbing, the language harsh.

And what makes me think of Furies and shuttles is the responses of some people who listened to the piece but didn't really hear it. They seemed to have heard "Why" (did this happen to me) instead of "What" (is the matter, what does it actually feel like to live without working fingers, hands and wrists).

Many of these responses were from people my age or older, and my sense is that, for them, there is no concept of What with disability, only Why--a pointless question with no meaningful answer. Disability and deformity are such taboo subjects that it's better not to speak of them at all. If you must, speak positively and say as little as possible. You either "accept" your disability or you shut up about it. Two terminals, a one-way shuttle: Silence or acceptance. Nothing in between. The shuttle's only purpose is to get the sinners at the angry, complaining end to the other, socially acceptable terminal. Furies, anger --> Eumenides, acceptance, the only direction and destination.

It's the way most cultures have dealt with disability and deformity in the past. Some cultures killed or "exposed" deformed newborns; many others relegated a person with a disability to a nonlife. If you were blind, for example, you became a beggar, an outcast. In this old way of thinking, if a disability couldn't be "fixed," made whole, there was no middle ground. You were a complete human being capable of living a full life, or you were not.

With the development of modern medicine and surgery, two changes occurred. The first was that some previously untreatable conditions could be repaired or their effects lessened: cleft palate, scoliosis. Today the problem is more often one of wealth and access to help, not surgical knowledge.

A bigger change is what I would call the second dimension of disability. Here, the condition itself can't be changed; total blindness, for example. But instead of the old all-or-nothing approach, a new way of thinking introduces the concept of "living with a disability." Canes and guide dogs and braille and talking books, teachers and organizations, help blind people to live as human beings in the world, with families and meaningful jobs. The disability does not dehumanize them even though it has not been "fixed."

We're still struggling with that second dimension, attempting to incorporate people with more serious and life-compromising disabilities into society, trying to make infrastructure accessible, recognizing people who don't walk or move like us or communicate in the same way as ... people, as us.

In my performance piece I went further, to what I call the third dimension, questioning what the disability is, how it affects me, how it feels. We may think we know what it's like to be blind or deaf or to use a wheelchair, and that there's no point in talking about it (although I doubt that anybody without a particular disability knows what it's like to live with it). For something like my unusual deformity, the reality is unimaginable, close to indescribable, even for me. But because I'm a human being, and intelligent, and prefer to ask hard questions than to wallow in bullshit, I needed to think about it, and to try to put my thoughts into words.

I can't handle things. I can't get a grip. These statements are true for me in the literal, physical sense along with their physiological, psychological implications. The brain sends signals along the nerves to hands and fingers, telling them to do ... oh, the myriad purposeful actions people do every waking moment: holding and using a toothbrush, a pen, a knife and fork, a comb, scissors, a credit card; turning the pages of a book; hooking a bra; braiding your hair or putting it in a ponytail; typing. When your fingers and hands and wrists perform these motions, they send signals back to the brain, completion, a climax of satisfaction: Mission accomplished.

"What is the matter?" It's the millions of little orgasms every day that I don't have; the millions of awkward, uncomfortable movements of the whole arm instead, the loose, wobbly grips, which bring discomfort or irritation instead of pleasure. It's the absence of pleasure and presence of pain that are the sources of the anger.

The big benefit of silent acceptance is for other people. It's easier to be around someone who isn't obviously in pain, who isn't angry or bitter. And of course many people with disabilities are happier if they can focus on living their lives and not on the ways that their physical existence is affected.

For me, however, the situation is reversed: most people who know me don't think of me as a person with a disability. They mention my intelligence first, and then my writing, perhaps, or my wit or my "cheerfulness." The recipients of my message couldn't reconcile the cheerful Ann they thought they knew with the angry Ann using harsh language to "complain" about her deformities. They had no way of knowing (until I told them) that cheerful Ann lives with constant low-level discomfort, and that cheerful Ann needs to say it aloud and explore the causes, for her own peace of mind.

I'm so far off the shuttle that I'm in outer space or the fifth dimension; not visible from Earth. Yet it's where we all live, in three dimensions of physical bodies; in the fourth dimension of time; and with minds that are conscious and self-aware. My cheerful self is a real me, a surviving remnant of the outspoken, comedic performer who, without this deformity would have pursued an acting career onstage and played the piano, and who, if these longshots didn't pan out or didn't entirely satisfy, would have taught high school history or English or biology. That me still exists. I'm cheerful by nature, and I like performing, teaching, making people laugh while also explaining things, helping people learn and comprehend.

But that me was born with a physical condition that affects a critical component of the human experience. On some deep physiological level, I can't feel things. I've felt romantic love only once and to someone who didn't or couldn’t reciprocate. I've never had a serious long-term relationship, not because everybody was turned off by the deformity, but because I was. That mysterious place where the human desires from my brain get lost in translation on their way to the deformed hands and back again has distorted my emotional self along with my ability to perform manual tasks. And that distorted me didn't have the courage to pursue the occupation she was best suited for. Not because I was afraid to show the deformities, but because, as a psychologically stunted or incomplete human being, I didn't dare face that cruelest of audiences: a classroom of teenagers.

In "What is the Matter?" I've gone beyond the straight line of acceptance or non-acceptance, and the two dimensions of "overcoming," to a third way of thinking, where the disability does not have to be hidden by silence or denied through the pretense that all its physical effects can be surmounted. I refuse to be either the invisible nonperson or the comic-book superhero, doing everything without human hands--as quickly and easily, and without any additional cost in effort or energy--that human beings do with hands. I'm daring to say that "coping" and "managing" are not the same as living; that a life without a certain essential pleasure is not the same as a life with it. It's an internal kind of questioning--my sense of pleasure, of being--but expressed externally for others to listen to, if they can. It's my way of saying: I am not the same as you in every way, I do not feel the same as you, but I am still a person. Can you recognize me as one of you while still seeing the difference?

For me, the act of speaking some of these disturbing truths has been liberating. It took me sixty years of reflection, figuring out not only the right questions to ask but also some of the answers, and the result is ... happiness. It's a sort of scientific pleasure, a discovery, a way of solving or understanding a problem that had up to now been impenetrable, unknowable. And this was what led me, against all decency and decorum, to send this message at Christmas. It was what I had accomplished during the past year, the only positive thing I had to share.

After Phyllida was published, many people suggested I write a memoir. They thought I was that saint or superhero, that my life was a typical upbeat, bullshit story of "overcoming." Now, having dared to speak the truth, I am ready to write my real (fictional) autobiography: because of What is the Matter? I feel able for the first time to write a novel with a protagonist who is like me in all respects, with the same deformities and disability.

In June I will be spending two weeks at Yale, a wonderful opportunity to share my writing work-in-progress with Lev Grossman, Porochista Khakpour and Kirsten Bakis, and to meet agents, editors and publishers.

Erinyes. Furies. I dare to say the name. Naming things allows you to control them instead of them controlling you. My anger and, yes, bitterness, have given me the strength to express my creativity instead of falling down in despair like a cat in a sweater. At the cost of the shock and hurt feelings I caused at Christmas, I have saved myself. This truth has set me free.