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!