None of the Above (22 page)

I was a fifth-year surgical resident when I met my first intersex patient, and she haunts me still.

Like Kristin, my patient had AIS. Like Kristin, she was a teenager when she found out. After I helped with the operation to remove her gonads, I saw her postoperatively. She came from a very poor and disadvantaged background, and I think I was the first person to really talk to her about her condition and what to expect in the future. During our office visit, she was remarkably stoic—uninterested, almost. She had come to our clinic alone, so I worried about her support system. I also knew there were questions she would only think of after the appointment, so I made sure to give her information about the AIS support group. In retrospect, that was probably the single most important thing I did for her.

After that clinic visit, I never saw my AIS patient again, but
she stayed in my thoughts. I've always wondered what became of her, and how she came to terms with her diagnosis. Did she have a boyfriend? What happened the first time she tried to have sex? Who did she tell—if anyone—about her condition?

It was early 2009. I was pregnant with my first child, a daughter. Just months later, Caster Semenya's story hit, and it became clear to me that intersex was a perfect jumping-off point for a discussion of tolerance, feminism, and gender essentialism. It begged so many questions: What does it mean to be a woman? What happens when you don't fit perfectly into the gender binary? And what role does your biology play not only in who you love, but who loves you?

As I began researching my story, it became clear to me that the great challenge of writing about intersex is that it encompasses so many different variations of biology and personal experience. There is no one intersex story. That said, it became clear that there were two controversies within the intersex community that I needed to address if I hoped to contribute responsibly to intersex awareness.

The first is the question of naming. While some in the medical community advocate use of the term Disorder of Sex Development (DSD), this phrase has been criticized because the word
disorder
suggests something inherently “wrong,” so it has been replaced by many with the term “Differences in Sex Development.” In
None of the Above
I chose to use the term
intersex
. I also made the difficult decision to have some of my
characters use the word
hermaphrodite
in the pejorative sense because intersex awareness isn't widespread enough to have eradicated the term. In recent years, though, some intersex people have reclaimed the word
hermaphrodite
in much the same way that gay men and women did the word
queer
. While this usage isn't for everyone, it gives me hope that someday in the future the term will be freed from its stigma.

The second issue is that of surgery. Until the early 2000s, intersex children were operated on with some regularity, often as infants. There are countless stories of intersex children whose genitalia were “corrected” in a way that caused irreparable harm and suffering, all in the name of relieving parents' stress by “normalizing” their babies' anatomy with what is essentially a cosmetic surgery.

These days, due to the efforts of intersex-awareness organizations, including Accord Alliance (www.accordalliance.org), Organization Intersex International (www.oiiinternational.com), and Advocates for Informed Choice (www.aiclegal.org), the strong recommendation is to hold off on surgery until the child is old enough to a) have formed a gender identity and b) consent to surgery knowing the full risks and benefits. Unfortunately, despite these recommendations, some intersex children are still subjected to unnecessary surgeries, underscoring the urgent need to educate physicians and parents on changing guidelines.

If there is anything I know as a surgeon, it's that every surgery has risks. So I struggled when I came to the part of
Kristin's narrative where she opted for a gonadectomy. In the end, with her family history of cancer, and the psychological space she was in, it was the right choice for her; importantly for me, she went in with her eyes wide open.

I couldn't have written
None of the Above
with a whit of authenticity without the incredible support of the AIS community. I can't thank Jeanne Nollman (president of the AIS-DSD Support Group for Women and Families: www.aisdsd.org) and Margaret Simmonds (director of the UK Androgen Insensitivity Syndrome Support Group: www.aissg.org) enough for reading early drafts, and providing me with the kindest insight and encouragement. Dr. Arlene Baratz read a later iteration, and her suggestions added considerable nuance and accuracy to
None of the Above
. Any and all errors of representation are mine and mine alone.

Finally, my deepest admiration goes to Pigeon Pagonis and Sean Saifa Wall for their courageous work with Inter/Act (http://inter-actyouth.tumblr.com) and Advocates for Informed Choice. You are my heroes. In Saifa's words, they speak “for the many who cannot speak, including those living with the shame, isolation, and secrecy that surround people with intersex conditions.” It's my fervent hope that Kristin's story resonates not only with readers who are intersex, but with any teenager who has ever felt that they were different, struggled with intimacy, or wished that they were “normal.”

Works of fiction featuring intersex characters

         
Middlesex
by Jeffrey Eugenides

         
Golden Boy
by Abigail Tarttelin

Nonfiction

         
Fixing Sex: Intersex, Medical Authority, and Lived Experience
by Katrina Karkazis

         
Hermaphrodites and the Medical Invention of Sex
by Alice Domurat Dreger

Articles and websites of note

         
Accord Alliance. “Learn About DSD.” www.accordalliance.org/learn-about-dsd/faqs

         
Dreger, Alice Domurat. “Media Advisory on Sex Verification in Sports.” www.alicedreger.com/media_ advisory_01.html

         
Inter/Act: A Tumblr “for young people with intersex conditions or DSDs to come together, express themselves, and unite their individual stories to develop a voice for a new generation.” http://inter-actyouth.tumblr.com

         
Kinsman, Kat. “Intersex Dating: Finding Love across the Intersection.” April 15, 2014. www.cnn.com/2014/ 04/15/living/intersex-dating-relate

         
Organization Intersex International. “The Real Michael Phelps Girlfriend Story.” www.oiiinternational.com/3110/the-real-michael-phelps-girlfriend-story

There's a special place in paradise for the agents and editors of debut authors. This book would not be in your hands were it not for Jessica Regel's faith in the first sixty pages of this story—I couldn't have asked for a better advocate and friend. More important, Jess matched me with an editorial dream team that at times understood my book better than I did. I'll be forever indebted to Alessandra Balzer, Sara Sargent, and Kelsey Murphy for helping me to kill my darlings and inspiring me to write new ones; for knowing when to be merciless and when to be kind; but most of all, for believing that Kristin's story was one worth telling. Thanks to the entire B+B editorial team—Donna Bray, Kristin Daly Rens, Jordan Brown, and Viana Siniscalchi—for making me feel so welcome.

Thank you to the crackerjack managing editorial team of Bethany Reis, Mark Rifkin, Josh Weiss, and copyeditor
extraordinaire Kathryn Hinds, for catching countless embarrassing mistakes in my draft; any errors that are still in the book are mine and mine alone. A round of applause for Alison Donalty, Jenna Stempel, and Barb Fitzsimmons, who designed a cover that is both visually stunning and true to the story.

To Caroline Sun and Booki Vivat, the best publicity team a girl could hope for, I say “Bravo.” Mad love to Nellie Kurtzman, Jenna Lisanti, Stefanie Hoffman, Megan Barlog, and the whole Harper marketing team for their enthusiasm for this book. In particular, a shout-out to Patty Rosati and the School and Library team for making
None of the Above
a Common Core focus title, and for tangibly increasing intersex awareness in our schools. I heart you, Molly Motch, Preeti Chhibber, Stephanie Macy, and Robin Pinto! Thank you to the many people in the sales department who championed my book, including Bernie Moran, Kim Gombar, Ashton Quinn, and Ronnie Kutys.

Huge tackle-hugs to my talented critique partners Abigail Hing Wen and Sonya Mukherjee, who have been there from the very beginning, cheering me when I got things right and setting me straight when my efforts went awry. It's not an overstatement to say that I may never have gotten published without them, and I can't wait to see their own books on my shelf.

My undying gratitude to the beta readers whose fresh eyes kept me on the right path as
None
went through revision after revision: Libby Copeland, Eliza Jones, Stacey Lee, Karen Akins, Marieke Nijkamp, Anna-Marie McLemore, Katia
Raina, Natasha Sinel, Dianne K. Salerni, K. M. Walton, Evelyn Ehrlich, Amy Garvey, and Kelly Lyman—you rock. Jazz Tigan, Christine Danek, Jeanne Schriel, Kevin P. Sheridan, and Joanne Fritz also offered valuable insight as I worked out Kristin's voice. Super-special props to An-Lon Chen for both beta reading and designing my amazing SWAG, and to Elena Gregorio, Vince Grim, and David Aversa, who very kindly gave me incredible insight into the worlds of social work, counseling, and psychiatry.

Thanks to the numerous publishing peeps whose keen insight steered Kristin's story in the right direction, particularly Jennifer Laughran, Brett Wright, Marie Lamba, and Amy Tipton.

Sometimes I joke that taking out someone's bladder tumor is a walk in the park—it's the writing life that's stressful. I owe whatever sanity I have to the We Need Diverse Books team, the Fearless Fifteeners, the Class of 2k15, and the Diversity League for helping me navigate this sometimes tortuous journey. Shout-outs also to the Hopefuls, the Milestones critique group, and the members of the SCBWI (née Verla Kay) Blueboards.

Long, long ago in a galaxy far, far away named New Hartford, New York, Robert Evans and Marilyn Morgan nursed the fragile writer within me. Thank you to Bridget Madsen for never doubting that I would see my words in print. At Penn, Karen Rile was an inspiration, and at Yale, Richard Selzer
allowed me to believe that someday I really could mesh my writing with my medical career. A million thanks to Jacqueline Woodson, Beth Kephart, and Kristin Elizabeth Clark for alleviating my blurb anxiety, and for modeling the types of writers (and people) I want to become.

Thank you to my parents and my grandparents for instilling a passion for reading in me when I was very young. Thank you to the Gregorio and Roberts families for giving me my pen name, and for supporting my craft with food, babysitting, and a general love of literature. Thank you to Olivia and Gabriel for putting up with Mommy on days when she had to lock herself into her office, coming out only for hydration and trail mix.

And then there's Joe: my first reader, my copyeditor, my publicist, and my best friend. Thank you for rooting for me every second of this crazy ride.

Last but most certainly not least, thank you to the intersex women of the AIS Support Group and Inter/Act Youth for embracing me so warmly as I told their story. I hope that I did it justice.

Stealing their signoff:

XOXY

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