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.