Tuesday, March 20, 2018

The First Double Helix Felix!



This year, Extreme Kids & Crew is honoring Sam Gold and Amy Herzog with our first Double Helix Felix. Everyone knows who Felix is (if you don’t, you can read about him here), but why a Double Helix, other than the niftiness of the rhyme?

As we’ve learned from countless detective shows, we are identified by our DNA. By and large, our cells are guided by the same instructions for growth and propagation as everyone else’s, but there are tiny differences in pattern and expression that make you you and me me and the magnolia tree in my back yard exactly that magnolia and none other. The similarities of our collective DNA speak to the connectivity of all life, while the differences help define and record the uniqueness of each individual. Celebrating uniqueness and commonality is what Extreme Kids & Crew is all about, so it makes sense to invoke this mother of all molecules in our awards. But I wouldn’t have thought of the double helix were it not for the doubleness of our honorees. Amy and Sam are both recognized for their significant contributions to theater: Gold won a Tony for his direction of Fun Home and Herzog’s 4000 Miles won an Obie for best new American play. They are married, and the parents of two young girls, 2 and 5 years old. They allow me to see a double helix somewhat removed from biology. Picture instead a twisted ladder, the sides the parents, holding and being bound by the rungs, which are the children and perhaps their careers in the theater, and all of these elements are in motion, spiraling around, together.

Herzog and Gold’s family has been given a further twist due to the DNA of their firstborn.  The instructions for her cells include a rare genetic pattern known as nemaline myopathy. This means that she lives with significant physical disabilities. I met her a few months ago when her family came to visit an Extreme Kids’s playspace in a public school in Red Hook. I am proud of our playspace and was trying to show it off; she was proud of her power wheelchair and trying to show it off. Guess who won? Picture her blithely disregarding my instructions, zooming around the halls of the school, a pack of adults running after her, laughing.

As gleeful as she can be, life is difficult for her and her parents. The knowledge that comes from frequent hospitalizations and dependency on complicated, bulky and expensive medical equipment has seeped into their work, alongside deep insights on how disability shapes family life. This understanding took theatrical form in 2017 with Gold’s Broadway production of The Glass Menagerie, featuring Madison Ferris, an actress with muscular dystrophy, and the debut of Herzog’s play Mary Jane, about the mother of young boy with multiple disabilities.

Last March, when The Glass Menagerie was running at the Belasco Theater, Broken & Woken’s Liz Wollman wrote a great review in which she praised Gold for emphasizing the role disability plays in Tennessee Williams’s masterpiece, and for highlighting Laura’s dexterity, awkwardness and strength, and the toll that simply moving from one part of the room to another can take on her and her family. Actors with disabilities have long been fighting for the right to play themselves on stage, instead of watching able-bodied actors be celebrated for how realistically they can pretend to limp. So I was surprised that some critics questioned Gold’s choice of Ferris, even calling it “exploitative.” I shouldn’t have been. “Exploitative” and “inappropriate” are words people use when they are uncomfortable and don’t have the words, inclination, or desire to explain why. My son’s body makes people uncomfortable, too. Discomfort is a natural reaction that goes away with exposure. All the more reason to have more Ferrises on the stage.

Madison Ferris, Sally Field and Joe Mantello in Gold's The Glass Menagerie
credit: Julieta Cervantes
I saw Mary Jane at New York Theater Workshop back in September. Herzog’s play, brilliantly and empathetically directed by Anne Kaufman, with a stellar cast and set design, holds a vivid and powerful place in my mind.   The first of its two acts takes place in Mary Jane’s “junior one bedroom” apartment in Queens; the second is in the pediatric intensive care unit (PICU) of a Manhattan hospital. Four of the five cast members take double, complementary roles. In the NYTW production,Liza Colon-Zaya played the home nurse in Mary Jane’s apartment and the doctor in the PICU. Susan Pourfar was a marketing professional with a disabled child and the Orthodox Jewish mother of seven, one of whom is disabled. Brenda Wehle played the super of Mary Jane’s apartment building and the chaplain at the hospital; Danaya Esperanza was the nurse’s niece and a hospital music therapist. At the center of the piece is the titular character, played by Carrie Coon.

Mary Jane’s almost-three-year-old son is Alex. We never see him, but we hear his ventilator, and the beeps that signal trouble. We know that he is loved, but we can’t see who he is or even guess at his personality until the last scene. Thus he first appears to be a problem, a burden, a worry. Only later do we learn that he is also a stubborn, funny, animal-loving little boy who has brought his mother joy and reckless abandon. This is not a play about Alex; it’s about the web of women keeping Alex alive, and his influence.

Before giving birth, Mary Jane was married and studying to be a teacher. After, she is single and struggling to keep her job as an administrative assistant, a job she needs for health insurance and that she loses once Alex is admitted to the hospital for a weeks-long stay. The facts are grim, but the play is not maudlin, nor is it a tragedy, though it skirts with the tragic. Mary Jane has lost the comforts of a conventional middle-class life and the pleasures of an ordinary motherhood, but she has not lost her humor, her capacity for love, or her deep appreciation of her world. Her life might seem circumscribed to an outsider--an effect generated by the cramped interiors of the set design--but she is not imprisoned.

In other words, this is not a conventional narrative, where the heroine starts off stumbling in the dark, and eventually wakes up. She is awake, though exhausted and struggling, from the beginning. The dramatic movement is more an intensification of experience. When we last see Mary Jane, her son is in the O.R., his condition precarious. Nothing is resolved. Nothing is “better.” Mary Jane is with the chaplain, discussing the goldfish she bought for Alex, when she gets one of the visual auras that often precede her migraines. She studies it, fascinated, aware of its beauty, even as the pain is closing in.

Carrie Coon & Susan Pourfar in Herzog's Mary Jane
credit: Joe Amarante
I see this as an inquiry play. Questions are scattered throughout--”Where are we?” shouts the niece, needing an address to give the ambulance driver; “What is it, mom?” asks doctor, when Mary Jane can’t decipher a medical question that she had wanted to ask. The last line of the play, spoken by the chaplain, is a question. A central query the play investigates is not why, but how its characters deal with suffering. There is the husband who had a panic attack the night his son was born and subsequently left. There is the plunger-wielding super, who believes the body turns suffering into cancer, and that cancer may be outwitted by yoga, fresh vegetables, adherence to building codes. There is Chaya, the mother of seven who understands suffering to be a reality of life. She and Mary Jane meet when Chaya is visiting her daughter at the PICU and pumping milk for her two youngest at home. They get into the sort of candid conversation that mothers in such situations sometimes do. Much of it is funny, but some is groping and unadorned, as when Chaya tries to explain the relief she can feel at the hospital:

There’s so much worry, it’s going in a thousand directions all the time, all I can do is keep track of the things I’m worried about. But mostly I’m worried about: will we have to go back to the hospital, will we have another month in the hospital? Because that’s the worst thing, right? The worst thing that can happen. But when we decide, okay, the disaster is here, we’re going, it’s…

Suddenly it’s quiet. It’s like…

…everything I have been doing, that was very nice, but it wasn’t real. This is real. And it’s a relief, that’s what it is, it’s a relief to get back to it.



Mary Jane left me shaking, overcome with awe and gratitude. I was very pleased when the community education liaison at NYTW asked me to come back and lead a post-performance talkback (Strange Beauty, my memoir about growing up with my disabled son, had just come out, and it seemed a good fit). When I returned for the discussion, I spoke about how well the production captured my own experience during Felix’s hospitalizations: the bureaucratic, stifling atmosphere; the feeling of forever waiting, shot through with dazzling moments of clarity and humanity. It also shone a light on the bonds formed between the families of special-needs parents and the people—overwhelmingly underpaid, overextended, barely acknowledged women—who help them. It was good to see these women honored on stage, as it was to see such humor, liveliness and kindness in the face of disability and dying.

Many members of the audience noted that they had been struck by Mary Jane in much the way I had. A writer who had been caring for her mother for the past fifteen years shook her head in appreciation. “Not one false note,” she said. But others could not see the humor and warmth, only the sorrow; these spectators found it unbearably difficult to watch. I was sad to learn that this play, which I found so luminous, depressed them. But that’s just it. We don’t see things the same way; we don’t experience pain the same way.

We each have our own wiggles, patterns, and experiences that make us us; that’s how DNA works. And yet we share much more in common. Theater, the best of it, reminds us of this. When disability, in all its knottiness and difficulty, is allowed on the stage, it allows us to more fully grasp who we are. Plays like Herzog’s Mary Jane and productions like Gold’s The Glass Menagerie do just this by giving the public a chance to examine the way that disability is interwoven into our lives, to grapple with it, learn from it, argue about it, and chink away at our fear.

So thank you, Amy Herzog and Sam Gold for contributing to the recent spike in representation. Honoring disability is part of our DNA; we’re thrilled that it’s part of yours, too.

Please, come out in person on May 3 and celebrate their Double Helix with us! 


Thursday, February 1, 2018

Getting to Competent

by Terra Turner

I have been an occupational therapist for 30 years. For the past 20 years, I have treated children with developmental disabilities almost exclusively, in home, out-patient and school-based programs. While I am passionate about this work, I generally don’t talk about the machinations of it away from the job. I embraced this strategy early on. It keeps the intensity of the work out of my house and allows my other interests and needs to be tended to. People who know me well know this and don’t ask. When new people come into my life, however, they have questions. Not long ago, I was at an event and as we went around the table doing the “who are you and what do you do” dance, some folk became fascinated with my answer enough to want details on what my days entail.

I told them a story of a particularly funny tantrum one of my kids had upon learning that he would have to get his coat and hat on without the level of support I had been giving him. I knew he was ready. He was sure he was not. He huffed, puffed, fussed, cried, cursed, snorted, snotted and finally, did what I asked. He nailed it on the third try. He was so proud. He had me tell everyone we saw walking to the bus what a great job he did.

I glanced over noting a couple of my table companions had horrified expressions. They were stuck back at the point in the story where the kid rubs his snotty face up my sleeve, wrist to elbow. “I could never do that," one mumbled. I laughed and told her that's how I came to have such a strong immune system and passed the baton to the next person at the table.

When college students come to shadow me, I tell them what I understand to be the most important aspect of becoming a therapist. A head full of kinesiology, anatomy, physiology, and being able to use the most current equipment and treatment paradigms means you are knowledgeable. But being able to move in the middle of someone’s crisis, be with them, and bring that knowledge to bear toward their growth and healing is what makes you competent.

Getting to competent fundamentally changes who you are; from body function (horrific odors no longer make me gag), to what you find entertaining (graphic violence and cruelty now make me gag). My friends tease me about how optimistic and patient they believe me to be. But I’ve spent my adult life watching people go from being not able to lift their head to being able to wave and laugh as they walk out the door. I may seem patient but, truthfully, it's because I can see progress just from the way a comatose person breathes and know that the next phase is dawning and what we can do to cross that bridge.

Thirty years in, I know in my soul there is no situation where “better” is not just do-able, but already on its way, when we choose to be the people who can get there. This isn't a saintly platitude but my world-view. It's the truth every day is built on. A snotty sleeve will never be my first choice, but it's a small price to pay.









When Terra Turner is not working as a pediatric occupational therapist she is a visual artist, avid sci-fi fan, gardener, elder care giver, foodie, community advocate and traveler. She lives in East Cleveland, Ohio in a bright yellow house.

Monday, January 1, 2018

Love and Memory

by Hilary Reyl

Before her dementia, my mother was the rational one among us.  As the daughter of a psychoanalyst, she had learned to indulge the emotional outpourings of others. I have endless memories of her on the phone to her friends, asking leading questions, providing supportive, feminist responses.  But I cannot recall hearing her confide.  Her manner and vocabulary were so straightforward that there was nothing confused or needy about her.  She had no place for histrionics in herself.  I supposed she didn’t think her own emotions would be particularly interesting to others.  Yet I longed to know them.  

The author and her parents.          photo credit: Joanne Leonard
When she met my father in the early 1960’s, he was suffering from throat cancer and had been given three months to live, a reality she successfully denied.  She acted as though it were the doctors’ job to be conservative and hers to keep life moving along.  Buoyed by her stubbornness, and soon by two daughters, my father lived on for thirty-four years.  Having lost his voice to the cancer, he spoke in a whisper that sounded like static to the untrained ear.  Only my mother, my sister and I could understand.  We translated for him to the outside world.

When our mother talked about the early touch-and-go years when my father was in and out of surgery, she did not discuss passion, but neither did she discuss duty.  She let the fact of her loyalty speak for itself.  It was left to my sister and me to overlay her story with our own considerable romanticism.  We told it to each other as a miracle, a leap of faith, an epic of sacrificial love.  But these were our own notions. Our mother made it clear that she was not a nurse, and that our father had to care for his own wounds in private.  Ours was not a sick person’s house.  We had a disabled father, like we had a pianist father and a Chinese scholar father.  She did not indulge in any cult of victimhood.

Our mother was realistic about the fact that she would be the family breadwinner.  Once my father had exhausted a series of academic grants allowing us to vagabond through Europe for a few years, we moved back to start middle school in Pasadena, California. It was decided that my father would be the parent at home. My mother would support us and make sure we had health insurance.  Since she was a visual artist, she said she wanted to use her eyes; she turned to cytotechnology, screening cells under a microscope for signs of cancer.   She trained for two years and went on to work for twenty-five.  

When my sister and I told her we felt guilty that she had to spend her days in a lab instead of an artist’s studio, she replied that we shouldn’t worry about her: if she’d had the burning desire to be an artist, she would have found a way.  Others had: she mentioned Toni Morrison, writing all night surrounded by babies.  It wasn’t our fault that she didn’t have such ambition.  She said this with a smug optimism, pleased with herself for coming up with an airtight, logical argument.  Her smile was unassailable.  She was fantastic at strategy games, even though she said she didn’t care about winning.

My sister and I were sometimes frustrated that our mother didn’t have more ego.  Seeing how smart she was, we felt she could have been “somebody”: a big lawyer or a judge, maybe, or an art director or bestselling crime novelist.  But she liked to read crime novels, take baths, and help people.  

She helped found an alternative school to combat segregation in the Los Angeles school system.  She went to Guatemala to screen pap smear slides because cervical cancer was the leading cause of death for women there.  She talked her friends through endless troubles and joys.  She nurtured my sister and me with beaming pride and her conviction that we were wonderful.  Once we were off to college, she opened our house to groups of Central American refugees.  She went to Ohio during the first Obama election to help people get to the polls. 

When our father died, he left a letter asking for his ashes to be scattered in a stream in Tuolumne Meadows in the High Sierras--his favorite trout fishing spot.  He died in January, 1997.  We had to wait for the snow to melt to drive up to Yosemite with our mother, our fiancés and our father’s two best friends.  The night before we left, our mother stayed up all night, sewing silk pouches for us to carry his ashes in.  When we told her she should get some sleep, she said quite firmly that she felt sewing these pouches was what a wife should do.  But otherwise, there were few words.  She took care of us by giving us beautiful vessels, by comforting us, by not drawing attention to her own pain.

Nearly ten years ago, when our mother began to lose her memory, my sister and I came unmoored.  We argued with her when she misremembered, trying to bring her back to reason, to set things right again.  She was the rational one, after all.  How could she not remember which granddaughter did gymnastics and which one loved dogs?  How could she not remember the plans for tomorrow that we had discussed over and over again?  How could she not know how to roast a chicken anymore?  Where was she?

Over time, slowly, we began to let go.  There was a moment when a close friend’s father died, and I called her for comfort.  This was a man my mother had liked immensely.  He had thrown an engagement party for my husband and me.  He was part of the fabric of our life.  My mother gave me generic words of support over the phone, but I could tell she had no idea who I was talking about.  She could no longer nurture me.

These days, as her hold on the present continues to loosen, the emotions our mother long left unspoken are surfacing.  As her rationality dissipates, she is becoming sentimental in her own right.  And she is letting us into the private landscape she shares with our father in her mind.  She speaks of him often, extolling him, missing him, making sure we know how much he mattered to her--and to us.  Her logic is fantastical, but then, the truth is no longer in fact.  She tells us that he is responsible for all good things in our life.  When we are driving now, no matter which car we are in, she invariably says how lucky we are to have such a good, safe car, and how thoughtful it was of my father to buy it.  “He took such good care of us,” she says.  Often she follows this by “Do you remember him?  He was a wonderful man.”  We tell her that he lived until we were twenty-seven and twenty-nine.  And she exclaims, “So you did know him!  I’m so glad.  I have to write that down so I don’t forget.”    

Last time I was in California, I took one of my daughters swimming and my mother watched us.  Afterwards, she told us that my father had taught her to swim, and that swimming was one of their favorite things to do together.  I did not remind her that my father had had a tracheotomy and that if his neck was ever submerged, he would drown.  She was channeling the stories of his prowess as a young man, when he was a star on his high school and college swim teams.  She had forgotten the many anxious hours she spent while he fished for trout on motor boats on Sierra lakes.  If he ever capsized, he would drown.  But not anymore.  Now, in her romantic delusions, he is her strong partner in the water. 

Our mother lives in a retirement community called Ocean House, on the water, across from the Santa Monica Pier.  She goes for long walks on the beach.  When she takes off her shoes, she sighs and tells us how much she loves the feel of the sand between her toes.  The mother who raised us would never have bothered us with her own physical impression of sand.  It is a gift to discover now.

She tells us that she is having memory problems, that she can’t understand what is happening to her, that she hasn’t always been “like
this.”  Often she will attribute her confusion to something physical: low blood sugar, or a concussion from an ice skating fall when she was a girl.  But more and more, she talks about missing her husband.  


“Do you know why I am like this?” she asks. 

“What do you mean, Mommy?”


“I’m like this because I lost the love of my life.” 

Hilary Reyl is a writer who lives with her family in New York City.  Her latest novel Kids Like Us was recently published by FSG.


Friday, December 1, 2017

Rescue Trombone and More

Rescue Trombone


This holiday season, Broken & Woken gives you the gift of Kali Evans's drawings. Kali is another of Extreme Kids's amazing crew of artists.  It was difficult choosing which of her pieces to put first, but I figure that we can all use a rescue trombone.  Enjoy!  

Aliens



Llama, Dalai Lama, Milo in his Dalai Lama T-Shirt, Llama Doll in Bed

Pigs in Cars



Paul from the Beatles

The Walking Dead 2 on Bubble Gum Kids TV

Early Drawing

Recent Comic Strip

Assorted Missing Flyers


 A bio of the artist, by her mother:  My daughter Kali is a fearless, joyful, outgoing kid. She’s also 10 years old and autistic. From the moment she could use a pencil (which was later than most kids), Kali would draw constantly. She started out by making patterns of scribbled “blobs.” Within a few months, these shapes evolved into drawings of insects, pirates, her favorite moments from Yo Gabba Gabba, and animals. By the time she turned 5, Kali would go through a composition book a week, and would literally draw herself to sleep: some mornings, I would find her asleep in bed with a pen in her hand and ink on her cheeks. 

These days, Kali still loves to draw animals and mythical creatures, and has expanded her range to include different formats and media. She makes comic books about tv shows on Alaksey, her personal network; designs fictional “missing animal” fliers; and loves watching animal face painting tutorials on YouTube and practicing on herself. Art helped Kali communicate with the world, and is now an essential part of her spirit.




Wednesday, November 1, 2017

Silas's Art


November's post celebrates the images of one of Extreme Kids & Crew's talented artists, only seven years old and already capturing the energy, beauty and mayhem of our world.  The commentary and bio below are by his mother, Vanessa Connelly.



Hate Cannot ..... Only Love Can Do That


The Man Who Walked Between the Towers

The Man Who Walked Between the Towers


Subway Study

Subway Study


Subway Study

New York City

America



The World



Silas is seven years old, autistic, and a proud Extreme Kid. He is also one of the sweetest, funniest kids you'll ever meet. Well, anyway, I think so. I'm his mom.

A few years ago, we got a copy of Jill Mullen's book Drawing Autism, which features painting, collage, and drawings by people on the spectrum. Silas was really intrigued by all the pictures, so we spent lots of time paging through the book and looking at them. His favorite pieces were very bright and detailed, with lots of patterns, movement, and emotion.

Silas had already begun to show an interest in drawing, but it has since become his favorite activity. During school breaks, he can easily draw for three or four hours at a time. No matter how busy we are, he makes time every day for at least a few drawings.

Silas's art tends to focus on his favorite books, movies and television shows. Scholastic characters, geography and New York City are also favorite themes. He particularly likes capturing specific scenes over and over again. His subway series has been ongoing for a few years now. He first started drawing subways after watching the "Rhapsody in Blue" segment in Fantasia 2000. Whenever he adds to the series, he likes to listen to the Gershwin piece while drawing quickly and deliberately.

He was very excited when I asked him if he was interested in contributing work to this month's Broken and Woken. He is proud of his art--and so are we.

The artist at work



Sunday, October 1, 2017

The Best Beauty Treatment Ever


A note from the author, Eliza Factor: Parallax Press just published Strange Beauty, a memoir about growing up with my son Felix, and how he deepened my understanding of language, community, violence, religion, and much more--but not beauty!  In spite of the title, the chapter about beauty did not fit into the narrative.  So here it is.  Some of you may have read an earlier version years ago—this one is better!  May it release you as Felix has released me.  


Detail from Modigliani's Gypsy Woman with Baby
Back when I was twenty or so, in love with painting, I would wander around lower Manhattan in a haze of turpentine and linseed oil, transported by the visual world. The beauty of people struck me most deeply: the arrangement of three newspaper readers on a bench, the faraway gaze of a tired man on the No. 1 Uptown, the loose folds of a panhandler’s shawl. Kandinsky was my favorite artist, but it was Modigliani who most influenced my street raptures. I had first come across his work in high school, and mistaken his portraits for the sorts of stylized faces I drew in the marginalia of my notebooks, imaginary figures that popped into being with the curve of a pencil. Then I spent my senior year of high school in France, and there on the sidewalk were men and women who could have stepped right off his canvases. He had been painting the people he saw, and doing it so well, that his understanding of his subjects’ beauty had seeped into me, seventy years later, in another country.

The people I saw as I walked to school or work or went uptown to see friends did not look like Modigliani’s French, they looked like New Yorkers, in all their variety and magnificence. I feasted on them. Those noses! Those eyelids! Those jawlines! Even a vein could be beautiful, the purple hue of a seashell, climbing delicate and rootlike up the softness of thigh or flush of cheek. Everyone was beautiful. I would argue about this with my boyfriend, who walked the same streets, yet more often saw wattle, drabness, suppurating wounds. He thought that saying everyone was beautiful devalued the idea of beauty. I thought that his lopping off great swaths of beauty was the devaluation. Beauty wasn’t uniform. It coursed out of some and dripped out of others, and took on different guises over the run of a life. There was the beauty of children who called forth adults to protect and nourish them, the stirring sexual beauty of teenagers and young adults who carried this on but complicated it with the desire for conquest, the beauty of the middle aged and old, which was not so mouthwatering but nevertheless powerful and moving. There was the beauty of the fat and the thin, the beauty of the thoughtful and the exuberant, the beauty of the purple eye-shadowed drag queen and the Amish lady at the farmer’s market selling her cheeses. There was also the beauty that pop culture, and my boyfriend, so adored: that of sexy young women. Over the course of my life, I’ve had two friends whose looks had such a conquering capacity that walking a New York City block in their company was to feel the desire not of one or two, but of a multitude upon you, as if even apartment dwellers watering their plants in the windows were stopping mid-pour to check out what was happening on the sidewalk below. That sort of beauty was a glorious thing, and well worth celebrating, but I knew that it was not the only kind.


Jump forward to my early thirties. Primping for a party, I put on a slinky black dress and spent some time in front of the mirror, arranging my hair and trying out lipsticks. When I was done, Jason, my newish boyfriend, looked me over and said, “Oooh, you got all pretty.” He meant it as a compliment, but I was furious. What?! You don’t think I’m pretty in writing clothes and pencils sticking out of my hair? See if I have daughters with you! Later, when we got married (we now have two daughters), he earned my complete forgiveness when I had the chicken pox. On day two of the disease, he came home from the drugstore with a bottle of Caladryl, which he dabbed over my boil-ridden butt, back, and eyelids. I could barely stand to look at my skin, I found it so repulsive, but he was gentle and unafraid. As he came to my blistered face, he smiled and said, “your eyes are still beautiful.”

I was pregnant with our first child at the time. I recovered my health, but my pregnancy became complicated. The following months centered around unnerving visits to neonatal specialists who would frown into the sonogram and say things like, it will probably be OK, the asymmetries are in the range of normal. Oh, the great relief of Felix’s birth! He was a beautiful baby. Perfectly gorgeous. Jason and I spent hours admiring him, a pastime we dubbed Felix TV. How delightful he was, lying on his baby quilt, arms akimbo, big eyes shining. We never tired of pointing out the becoming chubbiness of his thighs, the curve of his mouth. This is par for the course with most new parents. According to evolutionary biology, mammals are conditioned to find their offspring cute. Birds, too, I would say, judging from the care they give to their fledglings.

Because we were first-time parents, and because of Felix’s pleasing looks, we didn’t realize that he was floppier than most other babies until he was four or five months old. At that point, our doctor referred us to a cadre of specialists and advised us to get Felix physical therapy through the federal program known as Early Intervention. The dozens of doctors and evaluators we saw in the course of getting Felix approved for this program likewise found Felix attractive. The first sentence in most of his medical reports usually included the word “cute” or “adorable.” Jason liked to joke that Felix’s cuteness had been scientifically proven.

As the strangeness of our son’s body grew more obvious, I began to see how very lucky we were that Felix’s beauty was apparent to so many. At seven months, Felix couldn’t hold a rattle, roll over, sit. If you propped him into an upright position, his head would drop over sideways, as if there were no bones in his neck. Though his slump made some passersby anxious, others were attracted by his smooth skin, his plump cheeks, the fetching gleam in his green eyes. His beauty served as a gateway. I treasured it. Provided that it lasted, I trusted that it would serve to cushion the social struggles sure to figure in his future. When I mentioned this to Fred, Felix’s physical therapist, he told me about a job he’d had treating children at a large disability center whose main clientele were poor families who couldn’t place their children anywhere else. Fred’s eyes clouded up and his voice strained when he talked about this place. Most of the children there were neglected. Those who weren’t had the sort of symmetrical and radiant faces you might see in an advertisement for Corn Flakes. They might have been loud and obnoxious, but they were seen. Fred was particularly moved by a girl who could speak but whose face, touched with paralysis, was oddly contoured. She would light up, Fred said, when he came to say hi. He had the feeling she spent the rest of the day alone.



Not long after the benefits of Felix’s looks dawned on me, I became aware of the benefits of my own.
Felix, 2017
Up until Jason relieved me of my financial woes, I’d supported myself as a waitress. You rarely get hired as a waitress in the swankier parts of Manhattan unless you strike the boss as pretty. And though Jason and I met at a jujitsu tournament, it was not my left hook that got his attention, but my legs, in striped purple leggings, at the dance party afterwards. My appearance was not the only thing responsible for my husband and my livelihood, but it certainly played a role. Well, duh. Any reader of beauty magazines will tell you that looks are important. But I doubt that I would have realized how this applied to me without Felix. Even as a young woman, high on turpentine, reeling at the beauty of almost every New Yorker that caught my eye, I hadn’t thought of myself as beautiful. In my circles, you are not supposed to say, or even to think, “behold! I am beautiful!” To think such a thing is considered foolish, conceited, even deluded. Your friends and family tell you you’re beautiful. You pshaw their complements and linger on what you consider to be your ungainliness. This meant in early adolescence I was mortally ashamed of the thickness of my ankles. Then there was my nose, which had the shape of a ski jump and a tendency to turn new potato red under the slightest of provocations. Then pimples, fatty thighs, dull hair, and so on. I could always find a sampling of the sort of blemishes the beauty industry preys on, or creates, so as to sell $800 wrinkle creams, nose jobs, liposuctions. I had thought I was too smart to be swayed by this sort of thing. Not so.

When Felix was sixteen months old, an MRI of his brain revealed the reason behind his floppiness: lesions in his white matter. The doctors couldn’t tell us exactly how the loss of white matter would affect his development, only that it would, and that we should expect him to be “moderately to severely” disabled throughout his life. For the next year or two, I couldn’t say the word “disabled” without choking up. But it was the idea that got me choked up, not Felix, the flesh-and-blood child scooting around the house on his walker. Felix wasn’t scared or sad. He was eager, adamant, adaptive, ingenious. For each avenue that was blocked to him, he figured out alternatives. He might not be able to converse in English, but he was a master of body language. He might not have the balance to walk independently, but he could lift himself up onto the bars of his walker and swing like a gymnast, gleefully racking our nerves with his self-taught moves. I began to see that his disabilities were just things he couldn’t do. I had things that I couldn’t do, too.

Indeed, the more I thought about it, the more I came to understand that we’re all disabled, whether we are aware of it or not. This might seem like a negative viewpoint, but I have found it liberating. As I have an inordinately difficult time finding my keys or remembering names, so my neighbor can’t seem to stop chattering, so that columnist can’t seem to wrap his mind around complexity. So what? That’s who that writer is at the moment, that’s who my neighbor is, that’s who I am. We’ve all got our disabilities. We’ve got our version of cool walker tricks, too.

Breaking the boundaries of beauty took me a little longer. I think it began when a friend gave me Two Whole Cakes, a book by Lesley Kinzel, which I mistakenly took for a guide to eating healthily, as there was some copy about loving your body on the cover. I was so happy when I opened it and found not a diet book but a funny, smart, heartbreaking, blistering, buoyant memoir/manifesto from the trenches of the fat acceptance movement. What an eye opener! I hadn’t even known there was a fat acceptance movement. I had known, of course, that fat people had a hard time of it, and had come to consider fatness a sort of disability. But I had not grasped the day-to-day shunning and snideness that fatness entailed, which sounded worse than anything I’d experienced with Felix. As Kinzel pointed out, our culture expects fat people to be dieting continuously, whether or not dieting works; if they so much as decide to have a treat, say an ice cream cone on a summer day, they are rebuked by strangers. Why? Why should anyone care about how much someone they don’t even know weighs?

I suspect that nasty or repulsed reactions to fat people are not so different from the nervous waves of pity that Felix can plow up when he enters a place where people do not know him. Nobody wants to be fat, nobody wants to be disabled, so seeing the fat or the visibly disabled is a reminder that you don’t always get what you want. People like Felix and Leslie Kinzel stir up fear within us: fear of what we cannot control, fear of the stuff we’re trying to hide within us, fear of being ejected from the group, fear of nature having its way, of inevitable decay. If we can get outside of this fear, so much lifts. The fat person is not a horrifying blot on humanity, but a girl with sparkling eyes and cool earrings. My son is not a tragedy, but a kid who listens to too much Cold Play. So how do we this? How do we become comfortable with that which is deemed abnormal, when often it’s not abnormal at all, often it’s just life, and beautiful life at that. How do we turn beauty from an oppressive force into something more inclusive and celebratory?

Seventeen years ago, the photographer Rick Guidotti left a high-profile career in the fashion industry to start Positive Exposure, a nonprofit arts project that uses photography and film to redefine the general public’s understanding of beauty. He started on this path when, on a break from a fashion shoot, he wandered by a bus stop and saw a young girl with the remarkable pale skin and white hair of an albino. He was struck by her beauty. When he went home to find out more about her condition, he found that the photographs used to illustrate albinism were off-putting and dehumanizing. He wondered what would happen if the girl from the bus stop got the same photographic treatment as his supermodels. So he started taking pictures of people with albinism, dwarfism, genetic mutations and disabilities with the enthusiasm and appreciation usually accorded to the tall, thin, symmetrical and young. His images are gorgeous. Leafing through his photographs, you may wonder what the fuss is all about. Why are these people outcast? That is the genius of his project. When you take fear and otherness out of the equation, when you don’t allow them into your lens, you see people who are attractive and compelling. Rick told me that many who had admired his book of portraits, Change The Way You See, See The Way You Change, had applauded him for “capturing the inner beauty” of his subjects. He finds the comment ridiculous. He is not an x-ray technician. He is a photographer. He takes pictures of the exterior.

Meeting Rick made me wonder what had happened to that expansive understanding of beauty I had so enjoyed when I was painting. Had too much exposure to mainstream culture curdled it? Had it been my own shift from the visual arts to writing? Walking to pick up my daughters from school, I wondered if I could get it back and began studying the faces of the people I saw on Fulton Mall, imagining that I had a paintbrush in my hand. It worked. I was right back to my twenty-year-old self, gorging on dimples, laugh lines, artful piles of Nefertiti hair. Try it. Next time you’re on a crowded street, don’t look at the advertisements, blown up and trying to get your attention. Feast your eyes instead on the features of the people nearby. Imagine them enlarged, lit up, smiling down from the billboard above you. Why? Because it’s transformative, it feels good, and it’s free. Beauty is manna. If we let it, it can connect us and feed us and ignite us.

It can also serve as a tool of resistance. Consider the fiddler in Louise Erdich’s novel A Plague of Doves. Shamengwa’s arm was twisted and disfigured in a childhood accident, but he retained full range of motion in his hand. When playing the fiddle, he pins his gnarled arm in position with a white silk scarf, not “just any old rag,” and uses that hand to work the strings while the other works the bow. He is known for the power of his music, but his looks aren’t bad either. Here, a middle-aged judge admires him:

Few men know how to become old. Shamengwa did… I thought I’d like to grow old in the way he was doing it—with a certain style. Other than his arm, he was an extremely well-made old person. Anyone could see that he had been handsome, and he still cut a graceful figure, slim and medium tall. His fine head was covered with a startling white mane of thick hair, which he was proud of and every few weeks had carefully trimmed and styled…
He was fine-looking, yes, but there were other things about him. Shamengwa was a man of refinement who practiced clean habits. He prepared himself carefully to meet life every day. Ojibwa language in several dialects is spoken on our reservation, along with Cree, and Michif—a mixture of all three. Owehzhee is one of the words used for the way men get themselves up—neaten, scrub, pluck stray hairs, brush each tooth, make precise parts in our hair, and, these days, press a sharp crease down the front of our blue jeans—in order to show that although the government has tried in every way possible to destroy our manhood, we are undefeatable. Owehzhee. We still look good and know it.

Owehzhee reminds me of Ehzoyhee, a word that Felix coined some years ago. Felix cannot explain what his words mean, but his eyes sparkled and his tone lifted when he said Ehzoyhee. Perhaps it meant something similar to Owehzhee. We still look good and we know it. Knowledge is the key. Once Felix made me aware of my looks, I took to wearing nicer clothes than I had before. I remember in particular a green polka-dot button-down shirt from Boden. Who cared if there were blobs of baby gook smeared on the shoulder? It was a beautiful shirt, it looked great on me, and this strengthened me as I wheeled an unusual child around the supermarket, stocking up on baby formula and applesauce.

Nancy Mitchell, my grandmother
These days, with a misogynist in the White House, we need to gird against beauty being used as an oppressive force and claim or reclaim it for ourselves. So find and honor your beauty. Granted, it is not always easy to see or admit or claim. When I started writing this, and tried bluntly saying, “I am beautiful,” to my reflection, my mind churned up one of the popular girls from my high school, raising a contoured eyebrow and laughing in derision. Ha! You? Look again. Then I realized that she was a gatekeeper, deploying her idea of beauty to keep me down. I also realized that this poor girl’s idea of beauty had surely oppressed her as much as it oppressed me. Now I can say it. I am beautiful. It’s a handy statement as it frees me from the angst I see my friends going through as hair grays and wrinkles sprout. I don’t mind looking old. I find my mother beautiful, my aunts beautiful—and my grandmother, my goodness! Ten dollar haircuts and a little ridge of Cover Girl powder caught in a wrinkle, and no one outshone her.

I admit there are times when I sag midway through toothbrushing and think, ugh, what a pallid mishmash I am, and the shade of the popular girl from high school returns. But I’m figuring out ways to smite her. One is particularly enjoyable: I imagine myself as a flamenco singer, and not just any flamenco singer, but a woman I saw some twenty years ago at N, a tiny bar in Soho. She had iron grey hair, a short, stout body and lines like half-moons under her eyes. She looked like someone I might have seen on the bus, scowling and knitting, but as she stood under the spotlight and inhaled, the room became still. Her chest expanded and her eyes shone and she became a pillar of beauty and sorrow, strength and sensuality. Flamenco was developed by the Gypsies, Jews and Moors who took flight to the hills of Andalucía, when they were persecuted by the Spanish monarchy. It grew out of determination to survive and thrive in the face of imperial repression. It is not surprising that this is the form I turn to when I am feeling oppressed. I clap my hands and pound my heels with rhythmic devastation. I imagine myself that beautiful woman of the iron grey hair. The gatekeeper disappears.

Annette Duzant-Tasch, whose selfies stun me with their beauty

We all are beautiful. That is what Felix taught me--what I knew when I was a child, but had forgotten. So appreciate your beauty as you are right now, not as you were ten years ago or want to be in the future. Treasure your looks and the looks of your neighbors. Rear back in skepticism at enforced uniformity. When you can see beauty all around you, and shining from you, you will feel lighter and freer. It is a liberation we all can attain. You don’t need a Felix. You don’t have to call your Congressperson (though you should, for other things). You just have to open your eyes. As to those who would rank and order beauty, divide and deny it, turn it into an exclusive club: Resist them. Clap your hands and stomp your feet and sing them into dust.

Thursday, August 31, 2017

Am I Disabled?

by Wendy Caster
My friends keep telling me I should go on disability. Granted, I’ve been sick and largely unable to work for over a year, but am I disabled?
When I look at that sentence, I feel like laughing at myself. After all, isn’t “sick and largely unable to work” the definition of disabled? But it’s not that simple.
Backstory: I was diagnosed with a mean uterine cancer in April of 2016. The usual next steps followed—surgery, chemo, radiation—but they were particularly aggressive versions of each step. Just as you fight fire with fire, you fight mean with mean. As of this writing, I am cancer-free, but the treatment beat the shit out of me. I have lymphedema of my left leg, so it is swollen and heavy and uncomfortable. I am wearing a series of Velcro wraps, hip to toes, which make the leg heavier and uncomfortable-er. I have anemia, which may be getting better, but I’m still tired. I have insomnia, so it’s difficult to tell if my lethargy is caused by the anemia or lack of good sleep. I may or may not be bleeding internally. (A capsule endoscopy should clarify that, but I’m experiencing some health insurance challenges, so I’m not sure when that will happen.) The area of my left hip and then down my leg often hurts. When it does hurt, it’s bad enough to make walking difficult or even impossible. It doesn’t seem to be related to the lymphedema. Sometimes it feels like it might be sciatica, but then sometimes its quality and location change.
Most importantly, I have lost the ability to maintain focus. Last year I had to return a freelance project undone, which was humiliating, even though the client was lovely about it.
I have good days, but I haven’t had enough in a row to commit to a job or even a short-term project. I’ve missed many social events, given up theater tickets, and so on. My world has gotten smaller.
So, am I disabled?
As I’ve gone through this process over the past months, I’ve come to see that it’s a two-level question. (1) Am I unable to make a living? (2) Am I willing to accept the label of being a disabled person?
The answer to the first question is pretty clear. I cannot make a living. The answer to the second question is trickier, but it’s important. And it reminds me of my coming-out process.
When I came out as gay in 1977, embracing a label was more than a personal decision. It was deeply political. It would affect how people viewed me. It would eventually lose me a job. It would occasionally put me in danger. But--and this is an important but--choosing to accept that label helped me change the world. Over the next decades, many people would improve their view of homosexuality and homosexuals merely because they knew me. My openness was a cure for bigotry and misperceptions. Multiply me by the millions of other openly gay people, and you have same-sex marriage, gays in the military, and other significant political advances. I was and am only one drop in the ocean that advanced gay rights, but I’m proud to be that drop.
During my coming-out process, I had to let go of my own misperceptions to learn what it really meant to be gay. Right now, I’m working on my disability-related misperceptions.
These misperceptions are more emotional than factual. I wonder, am I disabled enough? (Would my embracing the label be disrespectful to people in wheelchairs?) I wonder, will I be a different person if I’m disabled?
Years ago I worked on Mainstream: The Magazine for the Able Disabled. The managing editor often spoke of people’s reluctance to accept the word disabled. He would talk about people he knew who used hearing aids, who walked with a cane, who missed work due to various illnesses, but who would never use that word about themselves. Why did it matter to him? Because the disability community had (and has) insufficient political rights, resources, and protections, because it was (and is) misunderstood, because it needed (and needs) an ocean of support to make necessary progress.
Hey, that sounds like the whole gay thing, no?
The more I think about this, and I think about this a lot, I realize that there’s a whole ‘nother factor in operation here: my father. (See, it’s not always about the mother.) When I was a kid, I was only sick when my father said I was sick. I could feel terrible, but if he didn’t believe me or if he thought I wasn’t sick enough or if he was just in a bad mood, off to school I was sent. I internalized this to a ridiculous extent (I mean, that was decades ago), and I’m still not quite able to judge my own level of illness. Or disability.
My friends are right. I can’t work, I cancel appointments, I frequently feel pretty rotten. In a real, official sense, I am disabled. So here I am, 40 years later, coming out again.
After I wrote all those words above, I sent an email to my oncologist that ended with, “In order for me to apply for disability, I would need a letter saying that I'm too sick to work and/or I have a diagnosis with a less-than-positive prognosis. Would you be able to write such a letter for me?” She wrote back, “I absolutely support your need to go on disability.” And I went into an immediate depression.
My main tool for dealing with the past 15 months has been denial. When I’m not actively feeling bad or doing something health-related, I don’t focus on my situation (or, at least I didn’t until the disability thing came up). Even though I am a researching sort of a person, I didn’t do much research. It just upset me. And even though I completely believe in support groups, I didn’t go to one. I didn’t want to spend that time totally focused on my health, or lack thereof. But my doctor’s note fucked with my denial. “Oh shit,” I thought, “I’m disabled!” And I felt incredibly bad and sad. That’s the power of words. I was no sicker than I was before I read the email. I was in no more pain. I was no more disabled. But the words hit me hard. Luckily, the sadness didn’t last too long.
I guess this is a process. The coming out continues.



Wendy Caster is an award-winning writer. She lives in New York City.