Friday, June 12, 2020

Ashes on the Tongue

Felix has been to a few demonstrations, most recently the Disability Pride Parade in New York City. While I am proud of him, he did not show any great pleasure at being stuck in a car for five hours as we drove from his school in New Hampshire only to be wheeled through the sweltering streets of Manhattan in July. He scowled most of the time, and his vocalizations veered towards the screechy and annoyed. So even if pandemic precautions had not prohibited it, I would not have taken him to the Black Lives Matter protest in our little town in New Hampshire.  That was for my daughters and me.  As a healthy white mother and as a student of history, I felt that I had no choice but to be there.  

My first teacher was black. His name was Gordon. He scooped me up and whisked me to safety when a classmate was angrily grinding sand into my scalp.  She was black, too. It is possible I was staring at her skin, and it is possible that's what enraged her. I hadn’t realized the variety of color people’s skin could come in.  All my family members were white, and we lived in an all-white neighborhood in Cambridge, Massachusetts.  That preschool was my first taste of anything approaching diversity.  Established in response to the Boston busing riots, it was a cheerful place of finger paints, building blocks, and daily naps, with a student body carefully culled from families who were half black, half white, half working class, half middle class. As an incubator for raising people committed to inclusion, it worked, at least on me. I have felt a distance from and discomfort in groups that are one class or one color ever since. 

Gordon had a gentle laugh, didn’t mind my shyness, and was my source of comfort and safety.  I loved him and have often wondered if his influence protected me from the fear of black men that social scientists tell us exists in the white heart.  Speaking for myself,  when I was of an age to feel frightened of boys, the white ones scared me most.  I had not yet studied American racism, yet my body must have known that while black boys might annoy me, they wouldn’t risk seriously hurting me.  White boys, on the other hand?  There was little holding them back.  They could do what they wanted, and still get appointed to the Supreme Court.  

I am writing about my somatic experience of racism because Toni Morrison called out white writers for not exploring this territory.  I cannot speak for anyone besides myself here, but I feel it as a curdling fury, a disgust with property and possession, a desire to cast off everything I own and wander around in sackcloth.  I recognize this as a desire for purity, a wish to detach myself from my country’s history and cultural legacy, to cleanse myself from sins that the entire nation has been steeped in for generations. My family stretches back to those first boatloads of white people.  We’ve got genocide, stolen land, the slave trade, Jim Crow, redlining, mass incarceration, and more on our conscience. None of this cuts down on my lifespan, lands me in jail, robs me of my children, but it weighs and sours.  It's a poison that gives power, ashes on the tongue.

“History does not refer merely, or even principally, to the past.  On the contrary, the great force of history comes from the fact that we carry it within us, are unconsciously controlled by it in many ways, and history is literally present in all that we do.  It could scarcely be otherwise, since it is to history that we owe our frames of reference, our identities, and our aspirations. “ James Baldwin, Ebony Magazine 1965.

This weight lightens when I am with Felix.  At this point he is seventeen and remains as unimpressed as ever by manners, customs, laws, and expectations.  He may be the person most immune to racism I’ve ever met. Certainly he attracts people of all colors and creeds, and responds to them with a directness untainted by history or culture.  I have written about the joy of wheeling him around the streets of New York City, witnessing and joining in moments of connection with people from all walks of life.  That experience was a big reason behind Extreme Kids & Crew. I was curious: Could his ability to break down color and class barriers go beyond him? Could the disabilities of our children help dissolve some of our racism?  In some ways, yes: The atmosphere at Extreme Kids & Crew is generally loving, open and integrated. The bolts of energy I felt walking the streets with Felix zing around our ballpit, too.  Parents of all backgrounds and from all parts of the city tell me how good it makes them feel.  I recognize there may be pains and slights that they are not telling me about. I am white. I am the founder. I hope we can use this moment to break through some of this hesitation, to locate and defuse our own biases, to build trust as a community, to become better.

We are at a pivotal moment in history.  The devastating effects of Covid, so disproportionally felt in black communities, a white supremicist President and gut-wrenching evidence of police brutality have exposed the depths of American racism to those who do not usually feel its weight. The resulting protests are encouraging.  People risking Covid to march in the streets, day after day, week after week in major American cities and small ones, too.  My aunt told me that in Boulder, Utah, with a population of around 200 white people, 100 demonstrated in solidarity with Black Lives Matter.  Solidarity marches around the world. This activity is having an effect: in New York, the repeal of 50-a means that law enforcement agencies will no longer be able to shield police misconduct records from the public, and the defund the police movement to redirect resources to community services is gaining ground around the country.  These are real changes, real causes for celebration.  We need to keep moving in this direction.

At Extreme Kids, we can find ways to shine a light on how structural racism affects disability. For example, white children are more likely to be diagnosed with autism or ADHD, whereas black children are too often labeled with “disruptive behavior disorder” and put on the path to segregated classrooms, juvenile detention, and jail. According to Erin McCauley, a doctoral student at Cornell University, more than half of black people with disabilities will be arrested by the time they reach their late twenties.  Lawyers, special education educators and parents have been fighting this for years.  Now is the time to escalate. We can do this.  Look at those kids organizing peaceful protests day after day.  Look at Ella Jones, who will be Ferguson, Missouri’s first black mayor, and likely would not have been elected without Black Lives Matter protests of the killing of Michael Brown.  Look way back to my preschool, the kind, warm arms of Gordon. Almost fifty years later, his influence continues.  Each thing we do, each letter, each march, each vote, each donation, each conversation, each hug (when we are allowed to hug again) each stretch of the imagination and understanding, all add up to change.  What we do matters.

Here's the sign we brought to our local Black Lives Matter protest. Let's talk and share together. Send us your and your kids artwork and ideas about how we build a better world for all of us.

Friday, May 29, 2020

Onwards with the Felixes! Part 2

The Felix Awards continue with a celebration of the prolific and talented Cece Bell, the author and illustrator of El Deafo and many other wonderful books. El Deafo won a Newbery in 2014 and is receiving a Felix in 2020 in gratitude for the impact it has had on our children. In the words of Felix Awards Committee member and poet Craig Teicher, “Our daughter read El Deafo maybe two years ago and has kept it within arm’s reach since—it’s far and away her favorite book, and has opened so many conversations in our family, time after time, about how to think about and understand her disabled brother, about how to understand difference in a broader context, about how to understand herself and our family within the contexts of her community.”

Emily Schultz’s Interview:

In the graphic novel El Deafo, by Cece Bell, a Kindergarten-aged rabbit in a polka dot bathing suit wears a hearing aid in her long ears, but secretly just wants to be like her friends.

Bell’s work tracks her real-life experience of moving from hearing to deaf following her hospitalization for meningitis as a child. She did her graduate degree in illustration and design at Kent State University before becoming a full-time author and illustrator who captured both the Eisner Award and the Newbery Honor for this book. Her other books are: Rabbit & Robot: The Sleepover, Rabbit & Robot and Ribbit, I Yam a Donkey, Bee-Wigged, Itty Bitty, and the Sock Monkey series. She has also created books with her husband Tom Angleberger, including Crankee Doodle and the Inspector Flytrap series.

In May, I spoke to her by email and asked her about her books, her own story, and her creative process.

Q&A with Cece Bell

Emily Schultz: You’ve done a lot of great children’s books. When did you decide to draw your own story? When did you know you were ready to tell it, in both words and pictures?

Cece Bell: I decided to tell my own story when I was about 40, after a particularly difficult interaction with a grocery store employee. I was struggling to understand her, and she got angrier and angrier as the transaction continued. I should have said, “I’m deaf! Give me a break!” But instead, I said nothing. So I ended up being mad at the woman, but even madder at myself for being deaf for most of my life, but still not able to speak up about it.

One of my main goals was to show hearing people what it feels like to be deaf. I quickly realized that the graphic novel format was perfect for showing this, as I could manipulate the speech balloons in lots of fun ways to show what Cece is hearing — or not hearing — at any given moment.

Plus, I am not the best descriptive writer, so I knew I could rely on my pictures to fill in the blanks of what I was having trouble expressing.

ES: Could you tell me in your own words how you became hearing impaired, and how your story intersects with or diverges from the character in the graphic novel?

CB: I lost my hearing in 1975, when I was four-and-a-half years old. I had been sick with meningitis and was in the hospital for two weeks. It took a while after I returned home for my parents to figure it out. I think I was so happy to be back home, and so exhausted from my time in the hospital, that I didn’t quite understand what was going on. As a child, it felt like my hearing was something that was taken from me. I had identified as a hearing person for all of my short life up to that point, and suddenly I was something else: deaf. El Deafo (my secret childhood nickname that I gave myself) is the story of that struggle.

The book really is my story. I made some adjustments to my timeline and altered or combined scenes from my childhood so that the book would be as entertaining a story as possible. But I made no adjustments to the feelings in the book — those are 100% true.

I ended the book with a lovely, grand moment of self-acceptance because I knew lots of deaf kids — and lots of kids who might be struggling in similar ways — would be reading the book. I wanted to give them a big dose of hope! But the truth is that it took years and years for me to get there. I didn’t have one big moment; I had lots of small moments that built up over time, helping me gradually feel more comfortable about myself and the things that made me “different.” Something that really surprised me was how telling my own story got me over that final hurdle to a place where I am really happy with who I am, and proud of my deafness and how I’ve chosen to navigate it.

And one more thing: technology, though often the bane of everyone’s existence, can be quite remarkable for those of us with disabilities. E-mail and texting have changed my life as much, or more, than hearing aids have. Being able to communicate with others in the same exact way that they communicate with others has been the greatest thing to happen in my adult life. Like I said, remarkable!

ES: One big difference between you and the book: the book shows the character of Cece as a rabbit in a polka dot bikini (a choice I love). Why rabbits?

CB: Bunnies have giant ears and excellent hearing. I felt like that one rabbit in a whole community of rabbits who had big ears like everyone else, but my big ears didn’t work. In real life, the cords of my school hearing aid went up to the sides of my head — visible, but not too visible. By making the characters bunnies, I got to draw the cords going all the way over my head, which looks much more obvious. I wanted to convey that feeling of worrying about what I looked like, of being conspicuous, when I didn’t want to stand out at all.

ES: As she goes from being a typical hearing child, to using a hearing aid she’s very concerned with how she looks to her friends. You really do a fantastic job of portraying a child’s self-consciousness and desire to fit in. But Cece the rabbit realizes she can have friends and pick and choose her own life path. What would you say to kids today who are having the same struggle of feeling like they need to fit in and wondering how to find their friendship circle and support?

CB: Share the things that make you different! Don’t hide them away like I did. Kids are curious, and the sooner you explain to them how and why you might be different, the sooner they have a chance to understand you better and to accept you the way you are.

ES: You have a mini-essay at the back of the book about how the book is only your experience with deafness. I wondered if you could speak to that here.

CB: Every disability has its own spectrum. In other words, some of us struggle more than others with a similar disability, and some of us struggle less. Some of us were luckier than others in how our caregivers cared for us and provided for us. The most important thing is that there is no wrong or right way to manage your disability. It’s yours and yours alone. You don’t need to apologize for it or explain it if you don’t want to; it’ll always be a part of your life’s path, but it doesn’t have to be the main part.

ES: I noticed on your website you do school and Skype visits. Can you tell us about how those work, or any memorable moments from interacting with your readers?

CB: My school visits are very rare these days, but yes, I do Skype visits from time to time. I’m actually going to switch to Zoom — one of the better things that these strange times have taught me is that Zoom is a better platform, ha ha! Anyway, I love it when a child raises his or her hand during the question-and-answer portion of my presentation, points to a hearing aid or cochlear implant, and says, “I’ve got hearing aids, too!” I’m in awe of the bravery it takes to do and say that. I was not that child!

ES: It’s quite an honor to win the Newbery Award — and well deserved. Tell me about what that moment was like for you.

CB: Surreal! And it continues to feel that way. Like I said earlier, I don’t see myself as a very good descriptive writer, so I will never stop feeling deep gratitude to the committee for giving me that award.

ES: What are you working on now?

CB: Something super top secret! And I’m also in the early stages of a couple of potential books. I’m making videos (posted on YouTube ) that are deep dives into each chapter of El Deafo. And I’m just hanging in there, trying to tough out these strange times we’re living in. Do Gratitude Lists count as projects? Those, too.

Emily Schultz is the author of the novel The Blondes. Her next novel is Little Threats, forthcoming from G.P. Putnam and Sons in November 2020. Her son is an Extreme Kids kid who is on the spectrum.

Friday, May 22, 2020

Onwards with the Felixes!

What do a sly, sexy, sharply political collection of poems and a graphic novel depicting flat-chested rabbits and elementary school blues have in common? The Felix Awards. This year, Extreme Kids & Crew celebrates Ilya Kaminsky for Deaf Republic and Cece Bell for El Deafo. The Felix Award Committee selected Kaminsky and Bell because their brilliant work is informed by their experience of deafness. Despite--or perhaps because of--their different takes on this experience, both artists illustrate how expansive and unbounded disability art can be.

While we understand that many people in the deaf community do not consider deafness a disability, we at Extreme Kids & Crew believe that disability, very broadly defined, is something we all share. The sooner we accept our own oddities, pains, flaws, gaps, and terrors, the sooner we can access the understanding, insight, community, creativity, humor, and forgiveness these very same things can bring. We celebrate art that brings this to light.

To introduce you to our 2020 Felix Award honorees, the novelist and Extreme Kids parent Emily Schultz has conducted interviews with both of them.  Below is her Q&A with Ilya Kaminsky. (I can’t recommend Deaf Republic highly enough. If you haven’t yet read it, now would be a good time. We’ll be discussing it at the Extreme Kids zoom book group in June.)

Next week: Cece Bell.

A special thanks to the Felix Awards Committee: Brenda Shaughnessy, Craig Teicher, Jerron Herman, Maysoon Zayid, Rebecca Alson-Milkman, Eliza Factor and Amy Herzog. 

Emily Schultz’s Q&A

Ilya Kaminsky’s linked collection of poems Deaf Republic is set mainly in a fictional Eastern European town under martial law. A story is told in snippets: during a puppet show, a boy is shot by a soldier; the townspeople protest by becoming deaf simultaneously. When the framing poems--both of which concern state violence in the United States--are considered, a larger story emerges.

Kaminsky came to the U.S. as a teenager and works as a writer and translator. Deaf Republic was the winner of the National Jewish Book Award, a finalist for the National Book Award, and was a New York Times’ Notable Book for 2019. It was also named Best Book of 2019 by The Washington Post, Times Literary Supplement, The Telegraph, Publishers Weekly, The Guardian, Vanity Fair, and Library Journal, among others.

In May, I spoke to Ilya over email and asked about his book, its setting and imagery, his technique and creative process. The interview has been edited for length.

Emily Schultz: Where did the idea for a whole town that has gone deaf come from?

Ilya Kaminsky: I did not have hearing aids until I was sixteen: As a deaf child I experienced my country as a nation without sound. I heard the USSR fall apart with my eyes.

Walking through the city, I watched the people; their ears were open all the time, they had no lids. I was interested in what sounds might be like. The whooshing. The hissing. The whistle. The sound of keys turning in the lock, or water moving through the pipes two floors above us. I could easily notice how the people around me spoke to one another with their eyes without realizing it.

But what if the whole country was deaf like me? So that whenever a policeman’s commands were uttered no one could hear? I liked to imagine that. Silence, that last neighborhood, untouched, as ever, by the wisdom of the government.

Those childhood imaginings feel quite relevant for me in America today. When Trump performs his press conferences, wouldn’t it be brilliant if his words landed on the deaf ears of a whole nation? What if we simply refused to hear the hatred of his pronouncements?

But — of course — the book has its own life, one quite different from mine. It is a love story that begins with newlyweds: a pregnant woman and her young husband see the soldier shoot and kill the young deaf boy. They watch the townspeople protest this murder by refusing to hear the authorities. In the middle of public calamity there is the private life of a young couple, and the depictions of days others in that imaginary town. The book is a fable, a fairy-tale in verse, but I hope it touches something in the lives of those who read it in our moment.

For those who haven’t read it yet, I wonder if you could tell me about Vasenka, and what type of town it is, whether there are real-life places it resembles?

IK: Like many others, I am a misplaced person, a refugee, a man cut in half by history. A part of me is still in Odessa, that ghost limb of a city I left. While these characters are imagined, they are also my family. I keep seeing images related by my grandmother about her arrest by Stalin’s regime in 1937:

When the police come to arrest her, they go straight to the kitchen. Right past her. The first policeman. Second policeman. Third. Straight to the kitchen. To the stove. To smell the stove, to see if she has burned any documents or letters. But the stove is cold. So they walk to her closet. They finger her clothes. They take some for their wives or daughters. “You won’t need any of this,” they tell her. And only then do they shove her into their black car.

They are so busy taking her things that they don’t notice the child in the cradle.

The infant stays in the empty apartment when she is taken to the judge. (The child in the cradle, my father, will be stolen and taken to another city. He will survive.)

She doesn’t know this. She also doesn’t know her husband was shot right away. The judge tells her, “You have to betray your husband in order to save yourself.”

She says, “How can I do that to the father of my child? How will I look into his eyes?”

She doesn’t know he is already dead.

And so she goes to Siberia for over a decade. And behind her, the infant stays.

That is my family story, from the past. But the book, of course, was written in the present, in America today.

As Americans we want to distance ourselves from a text like this one. But there is pain right here in our neighborhoods: We see stolen elections, voter suppression. Is this happening in a foreign country? No. A young man shot by police in the open street lying for hours on the pavement behind police tape, lying there for many hours: That is a very American image. And we talk about it for a bit on TV and online. And then we move on, like it never happened. And children keep being killed in our streets. This silence is a very American silence.

That image of a shot boy lying in the middle of the street is central to Deaf Republic. Of course, the book is a dream, a fable. But as you note, it begins and ends in the reality of the United States today. That is intentional. It is a warning of what we might become. Of what kind of country we have already become.

Americans seem to keep pretending that history is something that happens elsewhere, a misfortune that befalls other people. But history is lying there in the middle of the street. Showing us who we are.

ES: I love the way you use birds more than once to show sound — danger. You also punctuate the poems with street dogs (they are medics, and later “thin as philosophers”). Tell me about why you have let animals into the poems. To me, these are very cinematic touches.

IK: Humans aren’t the only citizens in our streets: the pigeon, the dogs, the rats, the sparrows, mosquitoes and so on are cohabitating this place with us. We can pretend they don’t exist. We can pretend we don’t live in nature. But where will that take us? In most fairy tales worth remembering humans and animals talk to each other; objects, too, talk. There are no walls, real imaginary. There is an act of engagement of reaching out, stepping outside the predictable, the prescribed. And, of course, poetry — any poetry — by definition, is one giant step outside the prescribed and predictable. The reaching out to the other.

It happens, in poetry, also on the level of speech itself — poetry wants to leap away from the generic. It wants to broaden the ranges of the possible in the language itself. The language shouldn’t limit us, it says, it should blast us open. The silences inside the language shouldn’t be suffocating. They should be revealing. Poetry understands silences. The language that we share with animals — anyone who has pets knows this — isn’t stiffening, it is not one where in silence is a suffocation, it is one where silence is a language all its own, a tongue of gestures, of engagement, of understanding. Same should happen on the page.

I tilt this conversation towards language because that slightly odd attitude towards speech is important to me.

When we came to this country, I was sixteen years old. We settled in Rochester, New York. The question of writing poetry in English would have been funny, since none of us spoke English — I myself hardly knew the alphabet. But arriving in Rochester was rather a lucky event — that place was a magical gift; it was like arriving at a writing colony, a Yaddo of sorts. There was nothing to do except for writing poetry. Why English then — why not Russian? My father died in 1994, a year after our arrival to America. I understood right away that it would be impossible for me to write about his death in the Russian language, as one author says of his deceased father somewhere, “Ah, don’t become mere lines of beautiful poetry.” I chose English because no one in my family or friends knew it; no one I spoke to could read what I wrote. I myself did not know the language. It was a parallel reality, an insanely beautiful freedom. It still is.

After all, what changes for one as a poet when one writes in a second language?

Even the shape of my face changed when I began to live inside the English language.

But I wouldn’t make a big deal out of writing in a language that is not one’s own. It’s the experience of so many people in the world; those who have left their homes because of wars, environmental disasters, and so on.

What’s important for a poet speaking another language are those little thefts between languages, those strange angles of looking at another literature, “slant” moments in speech, oddities and their music.

ES: This image of the newborn placed atop a piano and a song no one hears being played to her really stayed with me (in the poem “Arrival”). There are tender moments throughout the book, especially the love poems between Alphonso and Sonya. Did you write the poems consecutively or order them later to construct the narrative? Or did you always know what the story linking the poems would be?

IK: Yes, many poems in this book have to do with civic strife. But the story circles around the life of two newlyweds, the moments of small joys in a young marriage. It is a book of motherhood and fatherhood; it is a book of private happiness. I am a love poet, or a poet in love with the world. It is just who I am. If the world is falling apart, I have to say the truth. But I don’t stop being in love with that world.

True witness isn’t just about violence and war. To only notice those things is to witness only a part of our existence. But there is also wonder.

I see it as my duty to report this lyricism in the whirl of our griefs. It is a personal responsibility for me: My father was a Jewish child in occupied Odessa who not only suffered, but also learned to dance. He was shaved bald so that Germans wouldn’t notice his dark hair. The Russian woman who hid him, Natalia, hid him for three years. It is not an easy thing, to keep a restless child inside for three years. Natalia taught him how to tango. And so they danced for the three years of that war, in a room where the curtains were always drawn. Once, he escaped outside to play and the German soldiers saw him, so he ran to the market and hid behind boxes of tomatoes. All my friends tell me there are too many tomatoes in my poems. They say there is too much dancing. Is there enough? I don’t know.

Today Ukraine is at war again. I go there about once a year. Donetsk is occupied. In Odessa, that party town, there are terrorist attacks. A café I liked to frequent got blown up hours before I was to meet a friend there. That friend, the poet Boris Khersonsky, gathered neighbors around the ruined entrance to the café and read his poems aloud. Some folks brought food to give away for free.

Even on the most unnerving days there are very tender moments. We have a duty to report them, too.

Here is another image from the early 1990s, from a different war: Transnistria, just sixty-five miles from our apartment in Odessa. I am fifteen years old. People knock on our door saying they fled without a change of underwear, asking to please let them make a phone call. In this chaos people lose their pensions, their homes, but they still go to the city garden in Odessa and dance while old men squeeze their accordions. Old women polka across the street, their medals clinking, beer bottles raised in the air as the rest of us clap from the benches. Time squeezes us like two pleats of an accordion.

Is it foolish to speak of little joys that occur in the middle of tragedy? It is our humanity. Whatever we have left of it. We must not deny it to ourselves.

As to the second part of your question — the one about the writing process — I write in lines. So the lines find their way on paper whether I overhear two boys insulting each other at the gas station, or see a gull cleaning her feet, or two old men playing dominoes on a hood of a car, or two young women kissing at the fish market. They become lines on receipts, on my hands, on a water bottle, on other people’s poems. Lines collect for years, but once in a while they discover that other lines are sexy and, well, the poems may come from that sort of a relationship. If I am lucky. Which isn’t often. But one has to have faith.

ES: What are you working on next?

IK: I am writing new poems and finishing a book of essays. And, I am also working on being a better husband to my wife! And, a better friend to my cat! And, a better dancer in my kitchen!

Emily Schultz is the author of the novel The Blondes. Her next novel is Little Threats, forthcoming from G.P. Putnam and Sons in November 2020. Her son is an Extreme Kids kid who is on the spectrum.

Saturday, May 16, 2020

Join us for The Octopus Museum

Mollusks grew shells, homes, and stayed inside for millions more years, sometimes daring to stick a foot out, footing around for food.

Feeling like a mollusk? I recommend Brenda Shaughnessy's The Octopus Museum.  Our Extreme Book Club will be meeting with her to discuss this wonderfully funny, dark, excruciating, furious collection of poems the evening of Wednesday, May 27.  Expect a conversation that leaps from disability:

Before health insurance there was health, a pre-existing condition before the weird paper-cut-on-the-neck had you eventually getting around in a wheelbarrow pulled by a gentle mule named Sinister.  Sure it's metaphoric.  Also true.

To apocalypse:

And what if we lose the car? Running on some side road to--Pennsylvania/airport/Atlantic/evacuation center/relocation camp/as yet unknown.  Trying to buy a blow up raft for four people.  Can't take the wheelchair.

With a tidal pool of points between.  Please join us! All are welcome.  Contact me if you'd like an invitation.

Friday, May 1, 2020

Pickled? Try This.

Illustration by Kate Samworth in
 Why Fish Don't Exist by Lulu Miller.
Simon & Schuster, 2020.

Thank you, Lulu Miller, for dragging me out of my vat of sadness. I’d been feeling pickled, missing my son, loathing Covid, sick of the rain.  Then I opened Why Fish Don’t Exist, a memoir-biography mash-up by the co-creator and host of NPR’s science podcast Invisibilia, and the great swirling madness and sparkle of the world returned.
Why Fish Don’t Exist is of particular interest to those concerned with disability as it poses fundamental questions about the nature of classification. How do we separate one species, one population, one group from another?  Who gets to draw these lines, and what tools do they use? Miller traces the life and thinking of David Starr Jordan (1851-1930), a mustachioed taxonomist who rose to great heights in the early twentieth century.  He named and identified a fifth of the world’s fishes! He was the first president of Stanford University! He had mountains named after him!  The murky side of his worldly success unwinds like a detective story: it seems likely that he poisoned a woman who got in his way. Policies he advocated led to the imprisonment and sterilization of tens of thousands of others.  He was one of the first cheerleaders of the American Eugenics movement; he used his influence to seed the Eugenics Record Office, an all-too-influential think tank that churned out papers asserting that criminality and “pauperism” were inherited. According to the ERO, the way to eradicate poverty was to remove or damage the reproductive organs of the poor, the feeble minded, and anyone else collectively deemed unfit.  

Why dwell on such a man? Knowing thine enemy is as important as knowing thyself. Also, he makes a great counterpoint to Lulu Miller’s own brushes with depression, wonder, whiskey, love.  The interplay between his material and hers is endlessly fascinating, as are the illustrations by Kate Samworth.  Yes, there are pictures: dark, intriguing ones scratched with a sewing needle.  It’s a great web of a book. You can’t come out of it totally hating David Starr Jordan—or perhaps you can, but the portrait Miller paints is rich and compelling, filled with insights and discoveries too complex to detail here.  More likely, you will come out of it with an altered awareness of the way we divide the world, the helpfulness and obstruction of language, and a resounding appreciation for the moments when these barriers are bridged. Not to mention the beauty and wisdom of variation and revision. This one definitely gets pride of place on my disability bookshelf. 

Next up—or soon—This year’s Felix Award Honorees!

Friday, April 24, 2020

Silas's City

To the healthcare workers healing, to the cleaners cleaning, to the teachers e-teaching, to the feeders feeding, to the deliverers delivering, to the entertainers phone-filming, to the drag queens lip synching, to the police and prisoners, bureaucrats and scriveners, techies and tricksters, firefighters and fixers, mobster-saints, flingers of paints, butchers and bakers and candlestick makers, movers and shakers and renegade Quakers, to those out of work who have not gone berserk (and those who might have gone a little berserk), to the kids and their people, and everyone who makes our beloved NYC thrum, thank you. Our flame still burns bright, as evidenced in this wonderful picture by Silas Raines.

Check out Liberty's fabulous shoes! I will enjoy bragging about Silas when he hits the big time, but for now I revel in the magic of his lines. May this picture bring you some joy, too.

Here's a profile of the artist.

Name: Silas Raines

Age: 9 1/2

Extreme Kid Since: 2013

Something you like about quarantine: no answer.

Something you don’t like about this quarantine: I’m tired of staying home, I miss my teachers and friends.

Any advice to kids (or adults) in these days of Covid?: Play with your toys, eat good food, get outside and have fun.

Please submit your pandemic art to Broken & Woken.  We may be able to publish it or turn it into a fundraising tee shirt for Extreme Kids & Crew!

Friday, April 17, 2020

Doctors, Telephone Calls and Kitchen Dancing

by Eliza Factor

My friend Jenny is a doctor at the Brooklyn hospital which serves Sunset Park, a neighborhood dear to my heart as I used to live there.  I remember dodging kids playing street hockey and shopping at Winley’s Emporium, Chinese muzak and Dolly Parton songs blaring as shoppers selected from bins of carrots, bitter melon, lotus root and plantain.  That was a while ago, but the neighborhood remains diverse even as real estate prices have caused displacement throughout the borough. According to the most recent census, about half of Sunset Park’s residents were born outside of the United States—primarily in China, Mexico and the Dominican Republic.

The wealth of languages spoken in the neighborhood is a joy, but also, from my friend’s point of view, a challenge. If you are a doctor who speaks English and Hindi, how do you talk with a Spanish- or Mandarin-speaking patient?  Even when doctors and patients share a common language, other barriers pop up—fissures and misunderstandings related to differences in race, religion, education, gender, age, ability.  Fascinated by the role that communication plays in medicine, Jenny has spent years developing an intensive training that helps medical residents better connect with their patients. Extreme Kids & Crew has been involved in the disability component of the program; this spring, some of our parents were planning on visiting her hospital to share stories.  Needless to say, that plan fell through. But communication is still on my friend’s mind.

How best to console a person while wearing a hazmat suit? Think of the patients, separated from their families and not even able to see the faces of the doctors and nurses attending to them.  Hospital workers have taken to pinning pictures of themselves to their protective gear so patients can get a visual of the human behind the mask.  But the families can’t see anyone: they're stuck on the outside, unable to visit.  In cases where death seems inevitable, doctors have been able to call in the next-of-kin to arrange for last good-byes.  But death doesn’t always act in a predictable manner, and loved ones can’t always be reached.  There is a great deal of uncertainty and anguish, both inside and outside of the hospital.

Enter the humble telephone call. Ideally, the primary care physician would be the one to get in touch with families to provide them with updates. But it is not always possible for people running from ventilator to ventilator to look up telephone numbers, leave messages, wait for returned calls, or coordinate with translators. So my friend has gotten together a group of radiologists, neurologists and other specialists, trained them (“You ask the family what they understand of the situation first, then you tell them what you know.”), and given them the information they need to impart. Sometimes, the news they deliver is good. Sometimes, it’s not.  But as difficult as the process can be, even with clunky translation and broken connections, even when the news is bad, the doctors say they appreciate the work.  The known, after all, is invariably better than the unknown.  And regardless of the news, family members almost always thank them for calling.  “They are so grateful,” Jenny said.  We both teared up: this heartache and kindness at the same time, this understanding that in spite of the regulations and precautions tearing us apart, we are all caught up in the same thing.

The Covid pandemic is often compared to a war. In the numbers of dead and the way we cannot honor the dead as we would like, there are similarities, but war is a trait of humans--and those other extremely organized and populous creatures, ants.  Covid is not a multi-tiered society looking to claim our land, resources, allegiance.  Covid are motes of fat and protein looking for places to replicate.  If they could possess something like preference, they would undoubtably prefer not to kill us; after all, they can’t replicate on a corpse. 

I find this reassuring.  For once, we are not killing each other.  Instead, we are working together.  The “we” to which I refer is enormous. As of April 6, 184 out of the UN’s 193 member countries had either issued recommendations to restrict internal movement or enacted some level of national lockdown. I know, I know: There are people flouting the recommendations or making cynical use of them.  There are political leaders whose actions seem inhumane at best. But still, in my life, I have never seen people acting in such strange and bewildering harmony. Billions of people are staying home to protect the most vulnerable among us, billions are putting their lives on the line to keep us fed, medicated, clothed, clean and healthy. The news cycle is dwelling on disability related issues practically 24/7. 

There is much to be celebrated--from the exhausting, loving work happening at Jenny’s hospital, to the neighborhood volunteers delivering food and supplies to the elderly, to the city wide clamor of thanks that erupts from the streets each night at 7 pm, to the wonderfully spirited art and ad hoc performances that pop up on my computer screen, made by people from all over the world, bent on reaching out, even during quarantine, and offering encouragement. 

I love the videos of Iranian doctors and nurses dancing for their patients.  But as I’m stuck at home, what gets my own feet working are the clips of people getting down in their kitchens.  There’s the tango from a tiny Parisian flat and those South African ladies in their finery, working those hips as they mix that batter.  But you don't need to dress up.  You don't need impeccable rhythm.  You just need to move, any way you can, and let that joy percolate. Here we are, still here!

I’ll sign off with a few Extreme Kids families, dancing from their homes to yours.  Why not join them?