Q&A with Eliza Factor of Extreme Kids & Crew
Felix Factor is a beloved 14-year-old child—energetic, playful, and curious. He is also deeply disabled. He cannot respond to questions, walk on his own, and is so prone to violence that his family had to make the painful decision to move him to a group home in New Hampshire at age 10. His mother, Eliza Factor, Brooklyn based author and entrepreneur, founded a nonprofit called Extreme Kids & Crew in 2010, which offers a community center where children with disabilities can play and do art with the specialized equipment they need but often cannot afford. Factor has become an outspoken advocate for the disabled and their caregivers. Her new memoir STRANGE BEAUTY draws an extraordinary and nuanced portrait of her son, and shows how Felix opened up previously unimaginable reservoirs of compassion, joy, and determination in her.
Did you write STRANGE BEAUTY for parents of kids with disabilities, or for those without?
My friends who don’t have children with disabilities are often hesitant when the subject of Felix comes up. They seem to be nervous about causing offense, but they are curious, and I applaud this curiosity. I wanted to give them a fuller picture of Felix than the glimpse they get of him as I push him down the street, laughing or bellowing or jingling his keys. Felix has taught me so much; he has sharpened, enlarged, and sometimes upended my thinking on language, vibe, violence, connection, community. He has whittled away much of my fear of my own demise and my own inadequacies, and made it easier for me to forgive others. I wanted to share all of this with readers.
Did you and your husband have any doubts about having more children after Felix was born? How has Felix affected his younger sisters’ lives? Are they ever resentful of the attention their brother receives?
This is a book about all of us, not just Felix. It’s about my husband Jason and my marriage, and me transforming from a woman who was reluctant to even have one child to a mother of three who at one point, to Jason’s astonishment and dismay, pined for a fourth. But Felix’s disabilities did make me scared to have other children, and I talk about that in the book.
As for his sisters, they are still young. I can’t give you nice neat answer about how Felix has affected them, except to say that they are much more aware of the different paths that bodies and minds can take than most children, and most adults for that matter. As to resentment, it comes out in funny ways. When she was three, Happy wistfully said that she wished that she were disabled. Then she’d have someone to dress her throughout her whole life. Or Miranda, refusing to come to an Extreme Kids event, looking me in the eyes and saying with perfectly aimed tween disdain, “Disabled people freak me out.”
Most of us, at various points in our lives, “feel other.” How has writing the book made you think about your experience of other, both before having Felix and after, both for you personally and as a concept in general?
I write about an afternoon when Felix was about nine months old, and a bunch of parents and their babies came over to our apartment. The other babies were younger than Felix, yet they could sit, bounce on their chubby legs, look around and grab for things that interested them. Felix could do none of this. He felt like a heavy, ungainly lump in my lap. I experienced a moment of free fall that took me all the way back to sixth grade when I so much wanted to “fit in.” It was awful. I was jealous of the other babies. I was stricken with sadness. I was ashamed of myself and of Felix. I was ashamed of my shame. None of the parents in our living room meant to cast me out, but that’s how I felt. Felix, in his immobility and strangeness, was the other, and by extension, so was I.
Writing this memoir, and writing on disability in general has made me reflect on the fluidity of this feeling of otherness, for it fades away when you have your own group. When I started Extreme Kids, I felt less “other” than I’ve ever felt. Up until then, I’d felt most at home at the periphery of groups, and all of a sudden, I was at the center of a big community. At first it was disorienting, but now it feels good. When I’m with the Extreme Kids community, the division between the disabled and the non-disabled evaporates. There is no other; we are all disabled in our ways.
You write about the importance of community, and worked to make Brooklyn more accessible for families such as yours, and yet when Felix is ten years old, you put him in a residential school. Can you explain your decision?
It was an agonizing decision and one that I cover in detail in the book. I wanted to give him the chance to learn how to communicate through language, and Crotched Mountain School is much better equipped for this than the schools available to him in New York City. But it’s not easy finding and getting your child enrolled in a good residential school. If it hadn’t been for the level of violence in our house, I don’t know if we would have taken that step. Felix suffered from horrific fits, sometimes multiple times a day, for months at a time. I was afraid that he would blind himself or that I would go nuts and attack him—or that my exhaustion and post-traumatic stress would lead to disasters outside of our house, on the road, for example.
Happily for us, Felix’s violence receded once he was in an environment where he fit in and where he got the support that he needs. He’s made friends there. He’s made progress in school. He laughs often. He looks great. I wanted to write about the good that Crotched Mountain has done, especially because schools like that have lost much of their funding, and the trend continues. Rather than defunding these schools, we should be building more. The lack of alternatives means that children who do not fit into normal school environments are getting sent to juvenile detention. The great majority of children in JV are disabled. If we created schools and therapeutic centers to help them instead punishing them for being different, we would help not only them and their families, but entire communities.
Do you think about what it would be like having Felix if you were not where you are financially?
I lived around the poverty level for a dozen plus years before I met Jason, though I should make clear that it was a privileged poverty. I always had a family I could go back to if things got really rough. But the experience left me deeply aware of how out of reach most of the things Jason and I have been able to do for Felix are for most people. One of the reasons I started Extreme Kids & Crew was to extend a little of what we could afford. We had a playroom, for example. Most people in NYC do not have space for a playroom—or the money to buy the sort of expensive therapeutic equipment that kids like Felix really benefit from. I couldn’t give everybody my husband and his salary, but I could funnel some of his money into a communal playroom where this equipment would be available to anyone who wanted it, and where families with kids with disabilities could meet each other. Extreme Kids has a pay-what-you-can, donations appreciated entry so that everyone can take part regardless of income. And this has allowed me to meet parents from all over the economic spectrum. I’ve met rich parents whose money and expectations are not making things better for their children, and poor parents who have managed to provide their kids with a warm and fertile and accepting environment. Their example suggests to me that flexibility, imagination, being open to help is as important, maybe more so, than money. That said, programs that provide direct help to families are very much needed and should be extended. Love is not always enough. Sometimes you need a night nurse.
How have your relationships changed after having Felix?
When I first had Felix I felt very isolated and my world seemed to shrink—but over the years, he and his sisters have brought all kinds of new people into our lives, people who are not afraid of difference, people who really enjoy helping others. My world became a kinder place than the one I’d inhabited before Felix came along. He’s deepened relationships that existed before and brought me many new friends. And he mostly has scared away those who exhaust me. Jason and I call it Felix Magic: he repels people we don’t like, and attracts warm, generous, invigorating people. It’s a real treasure.
How has Felix changed the way that you communicate with people/understand communication?
I was so verbal before Felix came along! Any baby is going to yank you out of that pretty quickly. Babies don’t usually speak for a year or so, and though their first words might be cute, they are rarely intellectually scintillating. Meanwhile, you need to communicate with each other, so you move outside of words and attend to the tone of a cry, the heat or flush of the skin, the softness of a giggle. You read the body. Since Felix never picked up language, at least not in the conventional sense, he gave me an extended education in nonverbal communication. Learning how to read him, I learned how to read others: so much information comes through tone and the quality of a person’s silence, the vibe they give off, the way that they move. There have been times when Felix’s inability to pinpoint things through words has been devastating, and I hope that he will be able to more effectively use words one day, but the overall experience of so much nonverbal communication has been illuminating.
What is that special something that Felix has that makes so many people open up and smile?
There’s a movie of a young elephant playing in the waves that went viral of Facebook—you watch it and you just start grinning. Felix can have this same sort of effect. It’s that unfettered joy. Most of us, even if we feel happiness welling up within us, cannot express it so completely. We feel hemmed in by the moods and expectations of those around us, by manners and appropriateness. Because Felix does not take in these social cues, he is freed from that. If he’s bored, we see it completely; if he’s exhausted; we see it completely; if he’s angry, my goodness, beware. We’re not used to seeing the insides of us so exposed; we’re used to seeing masks. Being with him can be quite liberating. I think that’s why he opens people up.
The words ‘disabled’ and ‘handicapped’ are knotty ones. Can you speak about that?
I tackle the clunkiness and vagueness of those words at different points in the book, as my own understanding of it changed. I’ve titled my memoir Strange Beauty because I think of Felix and all of us as strange and beautiful. But at Extreme Kids and in much of my writing I use the word disability because I’m active in the disability pride movement and indebted to the disability rights movement for making this world a better place for Felix and all of us.