Rome Is Burning

by Eliza Factor

Wondering what other Extreme families are doing during this Time of Covid? A lot of us are making art. Here’s a piece I particularly love by Paulina Dunn. The words, from Richard Siken, draw on the old phrase “Fiddling while Rome burns,” an aspersion cast on Emperor Nero, said to have hung out in his version of Mar-a-lago, playing the violin while his city went up in flames. But really, what could he have done? At least he wasn’t telling people there was no fire, or to put out the flames with the eye of a newt. I, for one, would prefer the fiddle to a certain president’s talking or tweeting. 

I love the way Paulina’s collage links our present situation to other times and places, the plagues and disasters lived through before, the marvelous and comical desire to be holy as the world we know goes up in smoke. My vision of holy drew from Little Women: the mother and daughters sitting around the fire, knitting socks for Union soldiers. I could do that with my girls! We could sit around the computer, watching old movies as we tore up tee shirts and turned them into a big box of face masks for the workers at Felix’s school. What happened in reality was that I realized I don’t know how to sew. It took me two hours to make a single mask, and it’s not the sort of thing I would feel good about giving to someone else, though it suffices when I leave our little bunker for supplies.

My daughters have dubbed this the Boring Apocalypse because those of us not sick or not directly helping the sick do a lot of sitting around. We wait. We have Zoom seders and eat too many cookies. We repent. We realize how lucky we are: all these cookies, all these relatives and friends who are OK. Yet living alongside this non-eventfulness is a raging concern. We write condolence emails, condolence texts, condolence posts. We practice our own versions of magic by urging light, prayers, thoughts, vibes to wend from us to those we love. It’s not boring, at least not to me. The feelings of separation and connection are too powerful. 

This Sunday will be the first Easter I won’t be hovering by Felix, ready to grab a dyed egg before he chomps right through the shell. His absence is a hollowness in my heart, and yet I do not bear it alone. In Rome, in Bejing, in Maplewood, New Jersey, others feel this same ache. And probably also this same wonder at the creativity of our children, the new ways we find of helping each other, the clearness of the skies, and the thoughts that spring up in the quietness.

Dispatch from Dublin

by Eliza Factor
founder of Extreme Kids & Crew

I clean, I cough, I ponder seedlings and prevailing winds.  We are up in New Hampshire, to be near Felix, but due to Covid 19 we cannot visit him.  We can only wait, and growl at our internet connection, which comes via satellite and wavers when the clouds go by.  Time expands. My heart contracts.   A middle aged adult resident at Felix’s school has died.  But Felix is healthy, far removed, in good spirits.

You can’t hear sirens here.  You hear the wind blowing through the branches, chickadees, our dog barking at his own invisible threats.  I attack the storeroom behind the garage, in the hopes of resuscitating a work bench back there.  I sweep up years’ worth of mouse pellets that might carry the hantavirus, a silty layer of dust that might trigger my asthma.  I swab inky black blobs that might be black mold. None of it bothers me.  That’s the thing about wartime thinking. Get a shiny new repository of fear and the old ones fade into has-beens. I wonder if molds, motes and viruses hold microscopic conventions. If they ponder best practices for tamping down the human population. If they consider Covid 19 their reigning champion.

I told Felix it was heroic of us, remaining in our respective houses, meeting only over the phone.  We are being Daoist superheroes, fighting the disease by doing nothing.  “Ha ha ha!” he roared. He has been in a marvelous mood recently, laughing up a storm.  Maybe it amuses him.  We, who usually hurry everywhere, stepping into his slower, stationary world, making a big deal of what for him is quite ordinary.  Maybe he is a vanguard, lighting the way for stillness, uncertainty, isolation. I don’t know.  I just know that I’m grateful he’s happy. 

His sisters, not so much.  They are bored out of their minds. A friend is working on a community art project in Washington D.C.  The idea is to draw pictures, display them in your windows, tag your address on a treasure map.  That way neighbors walking their dogs or trying to get a breath of fresh air in a responsible, socially distant way can go hunting for art.

“Maybe the girls would like to do something like that,” she suggested.

“We don’t have people walking by,” I said.  “We’re in the woods.” 

“You’ve got foxes. Make art for the foxes.”
            After the girls’ daily bout with Google Classroom, I suggested we collect material from the forest, make figures, arrange them in the hollows of trees.  They listened politely.  They didn’t say no.  They are in middle school. That’s about as good as it gets. We tromped along the path, the dog bounding ahead, Miranda lagging behind. 

“What’s wrong?” I asked.

“Nothing.”

I considered a stick ledged with fungi. She tripped in a puddle.

“Are you OK?”

She looked like she was about to cry. “Please, please do not make me do pine cone art.”

And so it goes. No art for the foxes.  But she did paint this:

             

Good luck everyone.  Next week, a dispatch on your art.  Hang in there!   

Book Crew

Lonely? Despairing? Missing your crew? Join me for a virtual book club.

We have a good number of great writers in the Extreme Kids & Crew community. Reading their work is a great way to support them and transport yourself from the increasingly familiar walls surrounding us all. Plus if we meet over ZOOM to discuss, we get a chance to connect, which is what Extreme Kids & Crew is all about.

I have put together a preliminary list that can easily be expanded. I would love this to last beyond Covid 19. There will be a beyond, people. I promise.

First up is particularly apt. A Kirkus Review and NPR Best Book of the Year, The Blondes is a dark, comic, superbly entertaining account of a rabies like pandemic that affects only blonde women who must do whatever they can to hide their hair. By Emily Schultz.  First meeting: Wednesday, April 29 at 7:30 p.m.  


Next Up:

The Octopus Museum by Brenda Shaughnessy

Deaf Republic by 2020's Felix Honoree Ilya Kaminsky

Kids Like Us by Hilary Reyl

Trembling Answers by Craig Teicher

St. Ivo by Joanna Hershon

Let me know if you are in.  I would like to read a book a month.  Starting now.  Email me at elizafactor@extremekidsandcrew.org

Cozy Crew

My hands are cleaner than they have been since 2003, when Jason and I disinfected ourselves by singing 20-second renditions of the ABC’s while scrubbing with iodine in order to visit Felix in the NICU. When he came home, there were times when I’d be stuck in the house for months--when running to the corner to buy a carton of milk was a rare and delicious taste of freedom.  The handwashing and homeboundness we are all in now feels a bit like déjà vu all over again. 

But of course, this is no longer a personal matter--it’s citywide, statewide, countrywide, worldwide. As strange as all this feels--retreating into a sort of hibernation right when the daffodils are blooming--our precautions are for the very best of reasons. Those of us who are young and healthy are not acting to protect ourselves, but to prevent the disease from hurting the elderly and those with weakened immune systems.  Our seclusion is a form of mass altruism. That we are so radically acting on this--schools closing, sports on hold, stores shuttered--is a reminder that we as a society can shift habitual behavior. If we can do this to mitigate the impact of COVID-19, imagine the other things we can do when we work together.

Already, things are shifting: satellites show dramatic drops in air pollution in China and Italy. No doubt the air quality in the United States will improve also; there may also be fewer mass shootings, as there will be fewer crowds to shoot into.  Opportunities for positive change can come from this. But for now, we are in the hunkering-down stage, and a big challenge is how to stay connected in isolation. 

In my neighborhood, we have created a Google doc that connects neighbors who need help--with groceries, prescriptions, dog walking--to neighbors who can help them. And then there is the Google classroom, despised by my children, but at least it’s something.  

At Extreme Kids, we’ve been thinking a lot about how we can connect online and outside. Contact sports and playground equipment are not recommended, but what about a daily scavenger hunt? Find a crocus. Find a tree that’s waving at you. Find graffiti, a barking dog, a jumping squirrel, a yellow car. I will be organizing a virtual book club for both adults and children featuring works by this year’s Felix Awardees--more on that soon. Meanwhile, I encourage you and your kids to dance, draw, invent new recipes, write plays or comedy routines or poems.  Record your work and send it to me! I will post it here. We will share what we do best. We will call it Operation Cosy Crew.

The disability community is used to the world being topsy-turvy--to routines being broken, to medical solutions not working as planned. Coping, humor, resilience, creativity, working together are things we are good at.  Let’s use this time well. Let’s treasure what we have.

Please send your family’s pictures, films, stories to elizafactor@extremekidsandcrew.org

The Thing About Staring

Jerron Herman: The 2019 Felix Award Recipient

In honor of Jerron Herman, 2019's Felix Award honoree, we are reposting his wonderful advice to kids--useful for adults, too. Come celebrate him on May 15 at the Felix Awards!

Definitions for Kids

Upon reading this know that I’ve just turned 26. I’m officially in my mid-twenties, an old man. (Don’t laugh!) But I’m writing to my younger self--my silly, creative, bolder self--and I’m remembering how much that person still exists. One of the realities of being a disabled person is the question, “what’s wrong with [insert body part]?” as in, “what’s wrong with your eyes?” or “what’s wrong with your speech?” In my case, it was “what’s wrong with your arm and leg?” I have Hemiplegia Cerebral Palsy. It’s a neuromuscular disorder that keeps the left side of my body from moving voluntarily. Synaptic nerves travel from my brain, but misfire along the way, cutting off signals to my muscles.

And that would be my response, every single time. I would say it as I hung on the monkey bars with one-hand (and totally nail it); I would say it in line for Four Square and Wall Ball, where I would inevitably reign as king of the game. I said it when I turned six, and seven, and eight, but around sixteen they stopped asking. I started to get more looks than questions and though there was less talking to do, I still had to explain how capable I was. I did this by being silly, creative, and bold. By telling killer jokes as I tripped over my left foot, or learning to cut my waffles with a pizza cutter instead of a knife and fork, I became invincible. When I gave someone the definition of Hemiplegia Cerebral Palsy, I was ready.

Here’s a secret, though: I find it easier to just give a medical definition to a six-year-old when they boldly ask than it would be to live without the question at all. This is how I move through life; you may have another way, to which I would say, Yeeehaw! Please email me at… Ultimately, friends, I’m here to encourage you to be your version of silly, creative, and bold. Silliness tells the world you understand your value. Your disability doesn’t keep you from laughing because it offers the same ups and downs as grades, friends, and pizza slices – it’s a part of life, and life is funny. Creativity communicates to the world your higher intelligence. As you adapt to an environment with your disability, be it taking an elevator or striking up a conversation with a stranger, your brain is used a little differently, but always with cool results. Boldness changes as you grow, so there is no one way to be bold, either.

One way to be bold as a young person is to be unafraid to try new things. Once I wanted to rock climb, but I couldn’t do it because the equipment didn’t help me. But notice, I wanted and tried to rock climb, knowing there was a 50% chance it wouldn’t work. Boldness is also not being afraid of your own disability but embracing it as part of you, just like your hair and smelly feet are part of you. You might be thinking, “hey, I can change my hair color and change my socks! I can’t change my disability.” You’re right.

But here’s another secret: you can change how you think about your disability. I used to think my CP was an alien from another world; I didn’t know its language, and it seemed like it didn’t like or listen to me. Now I think of it more as a rambunctious cousin that just needs a PB&J to calm down. That same cousin, though, is the main reason I’m a professional dancer in New York City, working with Heidi Latsky Dance. As I learn to use him, I create really cool art that I never thought was possible. I think my CP and I speak the same language now, but sometimes we still don’t. Changing how you think about your disability opens up opportunities that you can’t imagine.

Back to this scary question of “what’s wrong?” I have rethought why people even ask. I used to think they wanted to hurt or ridicule me. Now, I think they’re curious. I’m so deliciously different from anything they’ve seen that they must know more. I’m an expert with all the answers to the universe (not really).

That’s why I think it’s a good idea to have your answer in mind, friends, to the question, “what’s wrong with [insert here]?” The answer could be a medical definition, or an entire life of rock climbing, laughing with your friends, dancing, or doing good work. Or the answer could also simply be, “nothing.” Each answer would be right.

Jerron Herman is a principal dancer and Company Associate at Heidi Latsky Dance, joining the company in 2011 having never danced before. Since then, Jerron has been featured with the company at venues like Lincoln Center, NYU Skirball, American Dance Festival, and the Whitney Museum. Through press and interviews Jerron was featured in an LA Press Club winning piece by John Bathke, Open Studio with Jared Bowen for PBS, and for his work in the world premiere of HLD's TRIPTYCH, the New York Times called him, "...the inexhaustible Mr. Herman." Jerron came to New York from the Bay Area in 2009 to pursue art and consumes it in varied forms, as a writer, lyricist, dancer, and history buff. 

Diversity and Disability

Print by Eliza Factor

For four years, my son went to a New York City public school that is coveted among parents in Brownstone Brooklyn, and that enshrines the false belief that it is inclusive to all. Among a handful of schools, it offers a progressive curriculum, opportunities to connect with similar parents, and what journalist Nikole Hannah-Jones has termed “curated diversity”: the kind of diversity “white parents like . . . so they’ll still be the majority and there won’t be too many black kids.” Its website features the ubiquitous collage of smiling black and brown faces. For the last three years, the school has participated in New York City’s Diversity in Admissions pilot, under which low income children receive priority for a percentage of kindergarten seats. In classrooms, PTA meetings, and on the playground, there were earnest and well-intended discussions about race, gender, and sexual orientation.

But like many progressive-minded schools that attract well-intentioned, well-off families, the school had little interest in nurturing neurodiversity. Although the principal often referred to the school as an “inclusion school,” which means that students with disabilities learn alongside their neurotypical peers and instruction is differentiated for all, it has a massive flaw when it comes to special needs diversity, and that flaw reveals itself in every layer of the community:  the administration, the teachers, the parents, and the kids. 

During the time my son attended the school, both kids and parents stigmatized the Integrated Co-Teaching (ICT) classroom in each grade, which is where many kids with Individualized Education Programs (IEPs) are placed. A student told me he was glad he wasn’t in the class “with the bad kids,” and parents lobbied the administration to ensure that their kids were not placed in that classroom. Kids who struggled to adhere to behavioral norms were particularly singled out. A parent told our sitter that my son, who has ADHD and other special needs, was “dangerous.” One of my son’s classmates referred to him as “a bad boy” throughout the four years he was a student there. The school did little to stop this kind of stigmatizing, despite my requests to teachers and administrators. Parents shrugged it off.

These statements and attitudes harm everyone, but they harm kids with disabilities most directly. The school’s inability to reflect on the damage this stigma inflicted on children with special needs seems at odds with its espoused commitment to restorative justice, which encourages members of the community to reflect on harms, consider their root causes, and determine how to make amends. 

My son, who is now 9, has struggled at school and at home as a result of his disabilities. This past fall, in fourth grade, things got worse, and the school responded by cracking down in ways that flew in the face of its restorative justice ideals. The school suspended my son several times. Each time, administrators violated the Chancellor’s Regulations in numerous ways – including not providing appropriate notice, not collecting appropriate documentation, and not contacting me within appropriate time frames. When I inquired about these issues, school personnel told me that because the school operates within a restorative justice framework, they don’t know how to follow the regulations that govern a suspension.

In one written statement, a sports coach described my son’s behavior as “completely unhinged.” When I pointed out to administrators that it was inappropriate to refer to a 9-year-old child in that way, I received no response. The school social worker then told me there was nothing they could do about it, because it was the coach’s right to use that language. I suggested that similarly derogatory language around race, gender, or sexual orientation would not be deemed acceptable – and received no response. The community’s flaws around special needs allowed the school to overlook the language.

In December, we left the school, where my son had been since kindergarten. I stayed in touch with a handful of parents. Beyond those people, not a single teacher, administrator, staff person, or parent has reached out to ask how we were doing.

Actually, one person did reach out. My son played on a baseball team last spring with several kids from the school, in a league unconnected to it. He loved baseball, and was looking forward to playing this year, so I signed up early. In late February, after sign-up for all baseball leagues was closed, I got a call from the team’s coach. Several school parents had expressed concern about my son being on the team, after word spread about an episode during an afterschool basketball practice that none of them had observed. I can’t put both of us under such scrutiny, so he will not be playing baseball this spring, despite the fact that he has been looking forward to it all year. This is the kind of bullying that highlights the community’s lack of inclusion. When I contacted the school to ask them to intervene, I received no response. 

I am an entitled white person. I have a law degree and a PhD. I don’t have a lot of money, but I know how to access it. I took out a $200,000 loan to pay for a new school, because the public school system cannot educate my son. I recognized when my son’s rights were being violated, and I spoke up. When my son was suspended without due process, I complained. He has me to defend him. I worry about kids whose parents don’t have the resources I have. Those kids, apparently, can still be suspended based on the statement of a principal, without any verification of the statement, in contradiction of the Chancellor’s Regulations. 

As I work through my anger and sadness over how my son and I have been excluded from a community that celebrates its embrace of diversity, I think about an interview I heard with a woman whose child was mentally ill. She said “it’s not a casserole illness” -- people don’t bring you food, check on you, and offer help. My son’s special needs didn’t merit a casserole, let alone a friendly email. They fell outside of the concerns of the school, and of many of the families that seek out schools like this one. We have a long way to go in terms of understanding that diversity includes supporting kids with special needs and their families.

Hilary Botein is an associate professor at the Marxe School of Public and International Affairs, Baruch College, City University of New York (CUNY). She studies the social politics of low income housing and community development. She lives with her son in Brooklyn.