A Proper Young Lady (which we posted yesterday) and my earlier review of Confessions of a Teenage Hermaphrodite (which was published in Frock magazine), Samuel sat down for a quick chat with Lianne Simon.
♥ On your web site blog, http://www.liannesimon.com, I note that you have interviewed numerous people in the past. Have you ever been interviewed before?
Yes. A number of times. Some of the book review bloggers have asked for an interview. My publisher did one. Even a couple of online radio programs.
♥ You've gone public about your intersex condition. When and why did you do so, and how has this affected your life?
Midway through reading Confessions of a Teenage Hermaphrodite, my editor said, “This is about you, isn't it?” I said, “yes,” but it took another year before I admitted I was intersex in a public forum.
My condition is similar to Jamie's in Confessions. I have a Y chromosome in some of my cells and not in others. That resulted in a mix of normal male and Turner Syndrome female. And a mix of testicular and ovarian tissue.
My mother changed my legal status to female in 1975. I spent most of the next twenty-five years hiding in plain sight as an ordinary woman. In 2000 I married a man who didn't care about my condition or my past. In 2010 I started writing. And in 2012 I started talking about intersex and my personal history in public.
I was terrified the first time. Even though the presentation was at PFLAG, I was sure there'd be someone there who knew me. But they listened with polite patience to me tell them about an intersex kid who wanted to follow Jesus. And halfway through, I saw a smiling face in the crowd. A gay man who worked for the same company as my husband. Afterward, I told him I was glad it was him in the crowd and not someone else.
Speaking about intersex brings home the reality of my condition. There's a cost to being transparent. A vulnerability. I no longer have a place to hide. Nor is it easy to forget what I am. And I never know how a friend will react when they find out.
In the past few months, several people from my church—including one of my elders—have run across my blog. I'm not sure yet how this will play out. What gives me peace is knowing that this is where my Savior wants me—living without a mask.
♥ When did you first realize that you had some physical characteristics that were different from most others?
I always had a strong sense of being other. My facial shape is characteristic of Turner Syndrome. As a child, I was always the smallest, and with my pixie face, thought I might be part elfin girl.
Boys were tall and strong and agile. I have spatial issues, so I got hurt playing with boys. Playing with girls was safer. And more fun, anyhow.
Mom bought me a tea set when I asked, and taught me to sew. But long hair was forbidden; they said I'd look like a girl. Well, yeah. Guess so.
Nobody told me I was intersex, though; my parents insisted I was a boy. I wasn't, but I knew I wasn't a girl either. Only later did I find out why I was so frail as a child. So small. So timid.
♥ In your second book, "A Proper Young Lady," Melanie, the female romantic interest of the main character, often visualizes protagonist Dani as the boy she once knew. In Melanie's case, it appears to help her to appease an internal need for a heterosexual relationship. Can you address the confused and/or disconnected feelings that an AIS-affected individual and her friends often have to deal with?
Historically, there's been a strong hetero-normative push from the medical profession. Vaginal intercourse was considered the gold standard; without it, you couldn't be healthy. So they attempted to force a binary sex on intersex bodies. And a binary gender as well.
One of the most difficult parts of growing up—for anyone, I think—is figuring out who you are. Melanie's childhood fantasies made sense when the girls were both young. She knew Daniel was only pretend—but that's what little kids do.
While Dani was away, she went from little boy with budding breasts to a grown woman. And that change was natural for her. That's what her body did on its own, and she was always comfortable with her body. But there's a touch of projected gender dysphoria for Melanie. She was in love with the little boy and friends with the girl. That Daniel was never real didn't matter to her dreams. Melanie's intersex friend was back, but the little boy was gone.
Melanie always considered herself heterosexual. Daniel was boy enough for their childhood games. And she could be friends with the intersex girl Dani. But loving Danièle would mean being homosexual. Or would it? Especially if Danièle was the father of Melanie's babies. How do sexual orientation rules even apply in a romance involving someone who's intersex?
♥ Has this been evidenced in your life? How?
I'm pretty sure my husband doesn't even think about it. He knows my past, but I'm a woman in his eyes. Since I'm well within the 'normal' range for women, I don't think about it much either.
♥ How has knowing your intersex diagnosis affected you?
When I first got a solid diagnosis, it explained everything. My small size and frailty as a child. My heart and kidney issues. Why I was different—you know—down there. Everything.
I got really angry when I found out that Turner Syndrome mosaicism was responsible for my feminine facial features. My pixie face. My face had a profound effect on my life. But I decided that I did like my face, after all, and wouldn't have wanted a more masculine one.
And of course I realized that having a mix of testicular and ovarian tissue meant I was a hermaphrodite. That's almost as mythical as being an elf. For a while I wanted desperately to be like other people. But I'm not. And that's okay now.
♥ In your writings, you mention a possible genetic link to the syndrome. You reference the suicide of a relative of Dani, the main character in your latest book, whose parents made the gender determination for her with a surgical intervention early on in life. Does this represent an event from your own life experience or simply a commentary on past medical practices?
Danièle has Partial Androgen Insensitivity Syndrome. AIS is caused by one of a number of mutations on the X chromosome, affecting the function of the androgen receptors. So it is passed down through carrier mothers. A woman with AIS will often have sisters or aunts with the condition.
Standard procedure used to be early childhood feminizing surgery on the theory that such medical treatment would prevent gender issues. They thought that if the parents never doubted the child's gender, the child wouldn't either.
Gender doesn't quite work that way, however. Surgery, secrecy, shame—the three pillars of intersex treatment led to a generation of unhappy patients. And yes, some suicides.
♥ Realizing that the best practices medical approach to intersex conditions has by-and-large changed, what is your take on the current thinking of the medical establishment?
Unfortunately, the medical establishment is slow to change. The rise of support groups have led to some improvements, but much of that is driven by patients and parents rather than doctors.
♥ Did you have a person in your life on whom you based the character of Melanie?
Melanie's a composite of a number of friends I've had over the years. Had I been into girls, she's the one who would have captured my heart.
♥ Motorcycle accidents play a part in your two novels. Is this something from your own personal experience?
In college I gave up trying to look like a boy. Until the school gave me a choice between counseling and expulsion. So I cut my hair super short and bought a motorcycle. I hadn't gone on hormones yet, though, so I didn't have any muscles. And I was really skinny—too light to use my weight to maintain control of the bike.
One day, my old British motorcycle took me airborne, and we tumbled down the road. Lying on my back, wondering why there was no pain, I heard a silent voice say I could either live for Jesus or die from my own foolishness. So I found a doctor who treated intersex and trans patients. After I refused testosterone, he told me society would accept me as a girl. So I went on estrogen and talked my mom into changing my legal status to female.
♥ From your writing, you seem well-versed on hospital procedure. Is this from your personal experience?
Almost three years ago, my husband had a traumatic brain injury. I spent two weeks in neuro intensive care, not knowing whether or not he'd survive. After his intracranial pressure stabilized, and the internal bleeding stopped, they brought him out of the coma. Two weeks later, they released him. He went through a month of outpatient physical therapy then. Today, he still has a scar where they drilled through his skull for the pressure sensor.
♥ When did you realize that you had talent as a writer?
The initial draft of Confessions of a Teenage Hermaphrodite was written in third person. Before sending it off to an editor, I tried writing a prologue in first person—the main character describing one of her early birthday parties. For the first time in my life, the words flowed easily from my heart to the paper. That's when I discovered that I had to internalize my characters—to become them—to write well.
♥ You have self-published two novels. Do you ever think of offering your work to a major publishing house?
I spent quite a bit of time searching for an agent for Confessions. Some really liked my writing, but none seemed willing to risk an intersex main character. After I submitted my manuscript directly to publishers, I got three offers. MuseItUp Publishing is a small but traditional Canadian press. They are a digital-first publisher that allows their authors to self-publish a paperback if they don't want to wait. So that's what I did.
I was less patient with A Proper Young Lady. The industry changed, and I was no longer certain I wanted an agent.
♥ Are you currently working on writing anything else?
Yes. Outsider is a Fantasy, an alternate history in which a race of elves is reborn at the end of World War II due to the use of an experimental weapon. The fair folk change gender—not sex—during puberty, and only become one sex or the other after they mate. After seventy years of being quarantined, first contact is made when a human teen washes ashore. One of the young fair folk must bond with it to save its life. But doing so means giving up their dreams.
♥ There was an organization, the "Intersex Society of North America," now defunct. Is there a something that has taken its place? Where does someone get information about AIS?
I've met most of the founders. And you're right, ISNA is no longer an active organization. If you want information on intersex, and especially if you have an intersex child, it's important to contact a support group. AIS-DSD is one of the larger organizations. Their website is at aisdsd.org.
♥ I read on your web page that you are on the board of directors of "Pride School" in Atlanta. Please tell me about that.
Pride School Atlanta is a safe place for bullied kids to get an education. It's open to any kid. Any. PSA uses a “Free School” model that takes a progressive approach to education. You can find out more, or support them at www.prideschoolatlanta.org.
♥ Are you seeing more tolerance about gender issues among organized religion, in general? Has AIS affected your religious views?
I've found a curious schizophrenia in some Christian denominations. For instance, the leadership of the Southern Baptist Convention appears to believe that gender issues are understandable for those of us who are intersex, but those who are transgender are in open, willful rebellion against God.
I've shared my history. And what I believe the Bible says about both intersex and transgender issues. Matthew 19:12, for instance, says that some 'eunuchs' are that way from their mother's womb, (i.e. intersex) some are made that way by men (i.e. castrata), and some become eunuchs for the sake of the Kingdom of God.
You have to understand that, according to Deuteronomy 23:1, a male who is castrated or whose penis is cut off is no longer legally male. So the third type of eunuch mentioned in Matthew 19:12 is changing his legal sexual status by modifying his genitals. For the sake of the Kingdom. In Matthew 19, Jesus goes on to say that not everyone can accept that. Few Christians I know can accept that at face value. But that's what it says.
♥ I have read some people in the transgender community state that their condition is akin to being intersex, not in a physical sense, but in a psychological one. How do you relate to those who are transgender and do you feel a kinship with them?
Many intersex children have a gender forced upon them, sometimes surgically or hormonally. That's not the same as asking for the hormones or surgery because you desperately need them.
Some of us who don't have surgery as a child still end up requesting a change in legal status. But the reasons tend to be different between intersex and transgender people. One factor for me was the desire to be left alone. When I started living as a girl people stopped questioning my gender. My emotional issues disappeared.
I couldn't father a child, nor even a woman penetrate. My skin remained soft long past the time a man would have grown a beard. It's difficult for me to comprehend someone giving up a body that had a normal puberty, that can have vaginal intercourse without surgery, and can reproduce. I longed for all of that.
On the other hand, I rejected testosterone because I didn't want to get broad shoulders, muscles, and facial hair. I liked my body's feminine characteristics. So I understand that going through the wrong puberty would be a torment.
♥ Is there something I haven't asked you that you would like to share?
A few people have questioned why Dr. Pierson would do some of the things she did. Why she was willing to help Melanie and Danièle with a surrogacy. Dr. Pierson knew both girls' mothers from their childhoods. Melanie's sister has the complete form of AIS. Danièle's aunt had PAIS. Dr. Pierson was their doctor as well. Her history with intersex patients goes all the way back to the 1970s. To someone she met when she was a medical student. Jamie.
♥ Thank you so much for taking the time for this interview. All the best to you in your future endeavors.
Thank you so much. I really appreciate the opportunity to chat with you.
A heartfelt thanks to Lianne Simon for agreeing to join us today, and to Samuel for taking the time to arrange the interview and bring us all together!