Looking vs. Knowing
Today, blue sky and a baby with restless dreams who was up during the night for the first time in a long time. Cranial-sacral therapy and oral therapy in the morning; we’ll try to keep him eating on his own for as long as possible. The multi-colored strings from his Easter basket are still well loved. His hair is growing longer and thicker. His two front teeth make him look slightly wolfish when he smiles or opens his mouth to eat. I look at him carefully, wondering what changes I’m missing. Does his blondish-reddish hair grow in the middle of the night? If I hovered over his crib and never closed my eyes would I see his thighs getting chubbier and his fingers growing longer? What moments would I witness? What progressions, which in his case are actually regressions, could I track?
In On Looking, a fascinating inquiry into the possibilities and limitations of the act of observation, Lia Purpura separates the act of looking from the art of knowing. This distinction, precisely but not intrusively drawn, accomplishes a unique distillation of experience – for the reader and for the person, object, or event being watched, gazed upon, “read.” Each lyrical paragraph is one small poetic piece after another, often about completely unrelated subjects. In each she creates an intimate conversation that feels both dreamy and close-up. Nobody is blamed but everybody is implicated by the act of, in sociological terms, “othering.” Purpura throws her gaze on everything, on everybody, especially on herself, but she never dictates a singular feeling or a particular mood. Her net is wide and forgiving, soft, more of a gathering in than a trapping of. She creates distance between herself and a person or an object and then steps inside that distance, closing it before looking around, reporting but not sorting, judging, deciding. This careful contemplation is at the heart of this wise, weird and artful book.
We know that all of our sensory experiences cry out for interpretation. It’s how we are in the world and how we understand who we are, our role, our place. It’s what makes us human, what makes us the animals that we are. This feeling=that reality. We make these leaps unconsciously. I’m particularly interested in these leaps because Ronan will never make them; his entire life will be experienced on a sensory, tactile level. There will be no intellectual interpretations/obsessions/mis-takes. There will be only embodied experience, one moment followed by another, without hope for what might come next and without regret about what has come before. His life consists of raw experience without the complicated filtration that drives many of us with perfectly normal brain function into obsessive, unhealthy behaviors, abusive relationships and early graves. The fact that I can try to imagine this kind of existence means that it is impossible for me to do so: the non-Tay-Sachs affected mind is constantly shifting, organizing, categorizing, computing, imagining. This is what the brain does, even in our dream lives. It’s what writers do, which often makes us intolerable social guests and difficult partners. Because Ronan doesn’t need or desire imagination I’m trying to frame his experience in a way that will give me a deeper understanding of his particular perception of the world. Where to look?
Enter On Looking, a book recommended to me by both a student and a colleague, Purpura slows down the quick shifts we make whenever we see someone or something; she makes the unconscious moves conscious, forcing the reader to step carefully down the ladder of questions who what when where how why instead of bumping down the rungs without thinking. In this stillness she exposes and often gently arbitrates our compassion, our prejudice, and how they work together to create meaning or misunderstanding. Looking becomes more than a voyeuristic enterprise: it becomes phenomenological. At its base, this inquiry is deeply human, both limited and boundless.
Here’s an example of Purpura’s insistent way of looking/seeing, a method that is self-implicating without being overly self-referential:
The woman with the half-arm, no, a bit more than half an arm (it stopped below her elbow) stands chatting with her friends waiting for the bus. In a gesture she must have developed long ago, she rolls a magazine into a tube and slips her half-arm into it. How well and how long must this gesture have served, because, really, who hides an arm, a perfectly good arm, in a magazine? Whose but a child’s arm could be covered by a magazine, its length or circumference?
One sees what one expects to see: “a magazine laid over the arm.” But because I saw the arm slip in, I see instead her quiet strategy. And what does looking at her, what does knowing that teach me – since all along in here I’ve been practicing, letting the sight-of work on me. And recording, recording, recording. I am not her parents and so do not feel guilt. I am not her sister and so do not feel that dual reprieve/protectiveness. I call up the warmth of such an arm in my hand (I don’t know if she says “stump”), the curve, the balance, its abrupt end, and the ghost of its missing length. I feel, like a child, neither moral or immoral saying this. I feel many things.
When the eyes something beautiful the hand wants to draw it.
Not exactly a paragraph that will resonate with writers of the recent movie Soul Surfer, which simplifies the disability experience to the familiar tale of “rising above” a physical calamity; a tale that espouses an equally simple belief in unseen forces manipulating the events of our lives from the sidelines and without our knowledge. In a word: gross. Movies with such a simple, one-noted message are like disability porn designed for able-bodied people who want to create distance between themselves and these perceived unfortunates (me, my son, millions of other people, and eventually the people who delight in the distancing, if they live long enough). We’re so used to these narratives that we hardly blink when they’re presented to us. Such interpretations are not only misguided but sidestep, even ruin, the richness that exists in any experience that falls outside normative standards. Finally, such lazy interpretations are boring and therefore an affront to storytellers everywhere.
Disability, as Purpura notes in the above excerpt, is created as much by the viewer as by the person being viewed/judged/othered. It is the social experience of being different that makes disabled people feel disabled; without that, we’re simply living our lives, complicated and different, the details of which remain unseen by those who might label our lives tragic or even intolerable (to them at least). I was struck by the idea of guilt in the above passage. Do I feel guilty when I look at Ronan? Yes, even though I had all the prenatal tests that were recommended and then some. Do I know his disease is not my fault? Of course. But on Monday as the geneticist spread out the sheets of test results on the examination table, I thought I should have insisted that Rick be tested, even if they told me there was no chance. Strangely enough, the results came back negative for Tay-Sachs for both Rick and for me, although we are the carriers of two other relatively benign autosomal recessive disorders. The genetic counselor was calling the lab to find out what had happened; the parameters of the test, at the very least, should have picked up one of the common Ashkenazi mutations that we know Ronan has. Did they test the wrong blood? This single question had me pursuing an entirely different story.
That’s what Purpura does so artfully, block by prose block. Reading this paragraph about the woman she watched and witnessed the reader is allowed to wander and to wonder: how did that woman waiting for a bus with her friends lose her arm? (And then we imagine how.) We think, why did it happen and when? We understand that this smallest of gestures, the arm slipped under a magazine, represents both ache and beauty at once. That ache is beauty, but it’s not just that. There’s a whole life in that single gesture, a whole list of moments seen or unseen. No surfboards or spectacular athletic feats or speeches promising that things happen for a reason. Just intuitive, human moves: through the author, we are inside one sliver of that woman’s life for just a moment, but without the prurient interest that can make a discussion of disability so difficult, given the limited understanding most people have of what it means to live with one.
I’m conscious – even overly conscious – of being a disabled mother with a disabled child. That may be what people see, which is, of course, the tiniest edge of the larger story. What stories do people tell in their heads? I can imagine. Why do I care? I have no idea. A lifetime of caring perhaps, of trying to “fit in” and “be right.” But I can appreciate the tenderness of the act of looking in Purpura’s inquiries, and tenderness is not something I rarely stumble upon when it comes to negotiating my difference and Ronan’s. Purpura, unlike people who claim to be curious and caring, is not trying to “learn” the story as people often are when they ask, “What’s wrong with you?” or “What’s wrong with your baby?” As if I have the equivalent of an elevator pitch for the story of my life. People who ask questions in such a direct way want damage and drama and cringe-inducing reality television scripts. As if the story can be nailed down or carved into an arbitrary and often false literary marketing niche as writers are often forced to do. (Example: it’s just like this or that book, but it’s also completely new!) Purpura’s narratives are not concrete and none of the variables are locked in. There has to be, she seems to be saying, there must be some fluidity in the understanding of who we are and how we relate, however falsely or truthfully, to one another. And there is mystery, too, in knowing someone. It requires some suspension of belief, or expectations. She uses jellyfish, of all things, to make her point.
There is not, as many think, anything at all in a jellyfish, just organized cilia and bell muscles, a gelatinous scaffolding for hydrostatic propulsion. These simplest drifters are like bubbles of milky glass – and who doesn’t want to see through to a thing’s inner workings, the red nerves, the blood and poison with a clear pulse, circulating. And yet one scientist says, “When thinking of jellies we have to suspend our bias towards hard skeletons with thick muscles and dense tissues.” He means in order to see their particular beauty, to see them, we have to suspend our fear. We have to love contraction. Filtration. The word “gelatinous,” too. The words “scull” and “buoyancy” are easy. We have to suspend “mucus web.” And realize that their bioluminescence, which is a show to see at night, is used to confuse and startle prey. You can look right through them. As if into a lit front room when it’s night outside.
Of course, we peer into houses at night not because they’re beautiful, but because we want to see what’s going on in there – illuminated, partial, and beckoning.
When I was heavily pregnant and in Baltimore to give a speech at Kaliq’s school, we saw a jellyfish exhibit at the aquarium. The precise and patient hitch and pull of these fibrous, filament-like, “simpler drifters” as they slide to the top of their tanks seemed as mysterious to me as the static hum of the many ultrasounds I’d had up to that point. Each week I watched and listened to Ronan’s heartbeat, glowing and insistent and pulsing in what looked like a pool of spilled, vibrating ink. There was something primal about the kicking in my stomach (the baby must move) and the jellyfish moving (they are compelled to move the way they do). What fascinated and repelled me out about ultrasounds was the feeling of being turned inside out for examination and the shock I felt each time that heart beat its steady pulse into the quiet exam room, even though I knew it was going going going all the time. Jellyfish only offer that glimpse into the inner workings of what they are: they are only things made visible, and they are the most mysterious of all. Creatures living with their insides on the outsides.
Grieving parents, I think, are a lot like jellyfish. It’s a suspension of belief to get up in the morning, a plodding, creaturely insistence of the clichéd one foot in front of the other methodology of surviving this journey. We are compelled forward and onward, often against our will. What’s unsettling about jellyfish is that we see their inner workings but they don’t care. We see right through them and it does not matter. What Purpura seems to be saying is that all of us want to see inside other people, but it’s the method of looking that marks the difference between violence and care, between blind intrusion and true curiosity. She invites us, in each of these passages to be more human.
And humanity seems to be in rare supply these days, especially in this country.
Two years ago, driving through the Chinatown section of Vancouver, navigating through piles of snow nearly as high as the doorways of the stores and restaurants my friend M said something interesting: “Poverty isn’t personalized in Canada. We’re all accountable.” A woman wandered down the street shouting “It’s OKAY NOW! IT’S OKAY!” People battled through the freezing rain with their heads down, walking far from the curb to avoid being splashed. “We all have responsibilities in Canada,” M continued. “It’s not about pity, it’s about community.”
That night I couldn’t sleep, thinking about what she said. I remembered attending a church in Harlem when I was a teenager; a church that catered to homeless men and women, and I remembered thinking it’s so great that this place exists and I meant that, and also I would never be so weak as to end up so helpless. I meant that, too. In the middle of the night the lake of seawater visible from our hotel window was frozen and inscrutable, a predictable gray. We know our ambitions die with us, but it doesn’t stop us from wanting to separate, sort out, sift through, “rise above.” I realize that I’m as responsible for disability porn as anyone; that I often see myself and my son through these distorted lenses, colored during a lifetime of refusing to question the stories I was offered and asked to believe. But I’m questioning them now.
In Paris years ago I walked to an old boyfriend’s house in the 19th Arrondisement. We were supposed to meet at the Eiffel Tower – in retrospect, a stupid idea – but I didn’t see him in the swarm of spring tourists. I walked for blocks and blocks, through a street where a fish market was just finishing up its daily business. By the time I got to the address I’d scrawled on a piece of paper my shoes were covered in fish guts and my entire back was wet with sweat. I sat down in the stairwell, stinking and shivering for at least an hour, growing sleepy but willing to wait all night. The hallway smelled of urine, fish, and curry powder. Finally I heard feet on the stairs and smelled a recognizable aftershave. There was S, the man I’d missed at the Tower. I’d loved him years before in Ireland but been too afraid to tell him. His face seemed to get bigger and he grabbed me by the arm, yanked me up. There were tears in his eyes, and anger. “What are you doing here?” he said. “I was going back to look for you.” I had seen that he was poor. He never forgave me for having revealed this aspect of his life that he’d worked, all the time I’d known him, to conceal. When the train pulled away from Gare du Nord the next day, he put his hand on the window for a brief moment and turned away without looking back. I knew I’d never hear from him again.
In ten years we will have the sequenced genome. We will believe that we’ll be able to know everything there is to know about who and what we are. We think we will know how to eliminate risk and illuminate only possibility. We believe we’ll be able to see everyone from the inside out. Will we really want to look? Is that how we want to be known?
Annoyingly, even though I have asked them to stop, the BabyCenter website keeps sending me updates: your 13-month old and house proofing! Articles and tips about toddler development, milestones, the latest trends in childrearing. I’ll be taking Ronan to music class not because I think it will make him the next Mozart or fire up some crucial part of his brain, but because he might enjoy it. I look and look at him, even as I try to help him. But will I ever know him? Probably not. And there is grief in that, a grief Purpura recognizes in her blazing gem of a book. But through that veil of grief she learns to enjoy the looking, to enjoy the othering as much as she learns to be suspicious of it.
Will there be more children for me? Will there be a purpose for me without children?
The jellyfish spontaneously swarm to the top of the tank. I roll through the grocery store with my limp and my beautiful baby who is more like a big, soft six-month-old than a thirteen-month-old, and some days I wouldn’t have it any other way because that is the way it is, and I can either accept it or give in to the histrionics and despair that many expect a grieving mother to exhibit. Other days I rail against it and want to pull those jellyfish from their tanks and flesh them out, give them spines and feet and all the necessary bones, make them walk on land, speak, explain, do the impossible.