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Ms. Simon is a Christian, housewife, and author. She also has a rare genetic disorder that left her with a sexually ambiguous body. She believes that God has called her to vulnerability and open dependence upon Jesus Christ as a starting point for sharing with the church about intersex.
Where are you from?
My dad's
parents owned a dairy farm near Plainfield. That's a bit west of Chicago. My
cousins and I ranged as far away as Oswego. We lived in Joliet for a while, but
moved to Springfield when I was nine. I've lived in seventeen states and a
couple of other countries.
Where do you currently live? And tell us a little bit about your life right now.
My husband
and I live in the suburbs on the north side of Atlanta. As you know, he
sustained a head injury this spring and was in critical care in the hospital
for quite a while. A few weeks ago he returned to work, so he's back out in the
stress of Atlanta traffic.
Your Website tells us a little bit about your intersex
condition. When you disclose to people
about your experience with Mixed Gonadal Dysgenesis (MGD) what do you say to
them in laymen’s terms so that they understand?
Mixed
Gonadal Dysgenesis is a rare genetic condition in which some cells have a Y
chromosome and some don't. That led to confusion during my fetal development.
My heart, kidneys, adrenals, and thyroid were all affected. It gave me a pixie
face. I've got some spatial deficits that prevent me from learning dance or
most sports. And my gonads were confused as to whether they should be testis or
ovary. They started out with some testicular function—enough to give me fairly
masculine-looking genitals, but not a male gender or puberty.
At Easter with Tea Set
Age 3 in the middle
Age 9
This is a multi-part question:
As an intersex person myself
(I was born with Androgen Insensitivity Syndrome), I find the reactions
from people whom I disclose to be compassionate, for the most part, and people
generally are interested and want to know more.
Has that been your experience as well when you disclose to
someone? Is the disclosure experience, in a public forum, different than when
you disclose one-on-one? If different, how so?
Is the disclosure experience different when telling a church
congregation? If so, please explain:
Wow. First,
understand that it's not something that comes up in everyday conversation. So
when I do disclose, I tend to dump too much information.
When I told
my husband-to-be, he dismissed it as being less important than his diabetes. It
neither excited nor disturbed him. (Can you guess that's one reason we
married?)
The first
friend I told seemed hurt, like "why are you telling me this?" The
second friend acted like I'd told her I had freckles. Two different pastors
appreciated that I'd opened up to them.
I've had a
few interesting reactions from trolls. Mainly things like "intersex
doesn't exist" or "you should be the gender indicated by your
chromosomes (or some other single sex parameter)."
Over forty
years, I've only ever told one employer, and that was when applying for a
security clearance. No major issues from that.
I would have
to say that, for friends, it's better to let them get to know me before saying
anything. When disclosing to strangers, I try not to give them any reason to
associate "intersex" with "strange." Some people at the
Wild Goose Festival dressed in outfits appropriate to a renaissance fair or
cosplay. That would have been fun, but it might have given someone the wrong
impression. My friends know how child-like I am. Even if that's from my
condition, I don't want to give people the idea that all intersex people are
this way.
I'll have to
let you know about a church congregation. I spoke at the Wild Goose Festival,
which was a liberal Christian event, and they reacted much like PFLAG did.
How has being an intersex/MGD person affected your
spirituality and what is your spiritual message?
When I was
young, all I knew was that I was the smallest of my peer group and had a cute
pixie face.
Lianne with bow tie second in from right
I first went
to a Vacation Bible School when I was seven or eight. I wanted to be a good
girl and obey my parents, but I didn't understand much about the Gospel.
When I was a
preteen, my health improved and my father decided it was about time I started
acting like a boy. My brother was tall, and strong, and handsome. How bad could
that be? But I felt like Pinocchio—if I tried hard enough—if I was good enough,
maybe God would make me a real boy. And since I wasn't, I must have some
deep-seated moral fault. Maybe it was that I still harbored dreams of being a
wife and a mother.
Age 12
When I was seventeen, I still wasn't very good at being a boy. I'd lost the top of my singing range, but still had no muscles, no body hair, no facial hair, etc. Not even my best friend believed me when I told her I wasn't gay. But this Christian boy loved me enough, in spite of it all, to befriend me, to share the Gospel with me, to answer my objections, and to lead me to faith in Christ. As a new believer, I assumed I could become this boy everyone expected. What happened instead was the shell that allowed me to function socially crumbled. I had to face the world on my own.
At eighteen,
I thought getting away from my parents would help, so I went to a college far
away from home. I moved from a supportive family to a boys' dorm. The boys made
it clear I wasn't like them. And one proved he could do whatever he wanted to
me. I came close to dying by my own recklessness. Christ had given his life for
me. He didn't want me dead—he wanted me to live for him.
At that
point, my entire life revolved around gender—wanting to be a boy or a girl.
Living meant doing something to put that issue to rest, one way or the other.
So I went to an endocrinologist. Up until that time, my mother had handled my
medical care.
Anyway, he
said that testosterone and anabolic steroids would give me a deep voice, facial
hair, shoulder width, muscles, body hair, and a raging sex drive. But I liked
my body the way it was—at least most of it. And, after living with boys in the
dorm, I wanted nothing to do with becoming more like them.
The doctor
thought my two most pressing issues were anorexia and depression. Estrogen
would help me gain weight and would get rid of the hormonal cause of my
depression. He said I wouldn't have any trouble being accepted as a girl,
especially once I got breast development. So
I went on estrogen and talked my mom into changing my legal status to
female.
Legal Female Status on Passport
You recently gave a presentation at the Wild Goose Festival
in North Carolina. What was your message? And how was it received? What kind of
feedback did you get?
I did. I
started by asking if anyone in the group had a teenage daughter. I asked the
mother to imagine that her sixteen-year-old hadn't gotten her period yet. So
she sent the girl to a specialist who diagnosed her with Complete Androgen
Insensitivity Syndrome. She had XY chromosomes, but a mutation on her X
chromosome kept her body from processing male hormones. Although she had
female-typical genitals, she had testes in her abdomen instead of uterus and
ovaries.
I told
another mother that she had a newborn. The baby looked male between the legs—at
least at first glance. The doctors diagnosed the child with Congenital Adrenal
Hyperplasia. That was a medical emergency—the child would need to take steroids
her entire life. Any medical procedure or injury could turn into a crisis. The
doctors recommended feminizing the genitals, but she refused because they were
only a cosmetic issue, and they had just told her how dangerous surgery was for
these kids. I told her that the same hormones that made her child's genitals so
masculine had also affected her brain. She was tomboy who might have masculine
interests lifelong, and she might be attracted to girls.
I told a
gentleman that he had a newborn with ambiguous genitals. The doctors said there
was a good testis and a bad ovary in the baby's abdomen. They recommended
raising the child as a girl. They were the experts, so he went along with them.
The doctors removed the child's gonads. They removed her clitoris. And they
lined a vaginal canal with a skin graft. Two or three years later, his child
starts insisting he's a boy. The doctors said to never let his daughter know
what was done to her. They said he should never doubt her gender. All the child
knew was that there was something so shameful about him—or his body—that you
couldn't even talk about it.
Then I
shared my condition and history with them, and Megan talked a bit about how
eunuchs/intersex were treated in Biblical times and how intersex could be
considered something good.
The audience
asked some questions. A few hung around to talk. Everybody was polite.
Why write “Confessions of a Teenage
Hermaphrodite” for Young Adults?
My husband
and I used to visit Phoenix every summer. The last time we were there, we drove
out the Apache Trail to Tortilla Flat and back. The next morning I woke up with
the need to tell a story, to write a book. I became so obsessed that my husband
let me quit my six-figure job to start writing full time.
Confessions
is based on my childhood and stories other intersex adults told me about
theirs. I'd also spent more than ten years answering inquiries on behalf of a
support group for the parents of intersex children. I wanted to do something to
help them.
What is your desire for readers to get out of your book,
“Confessions of a Teenage Hermaphrodite”?
Some of my
motives were pure selfishness. I wanted to show people the surreality of my
childhood—what it's like to grow up between, to live over the edge. And God had
been pushing me toward increased transparency and vulnerability. Confessions is
something people can read that might explain my heart better than anything I
could tell them.
What has your feedback been from parents and young people
who have read your book?
Most of the
feedback I've gotten has been positive. Especially from young mothers.
Confessions is different than other young adult novels. It's a deeply emotional
book with strong fantasy elements.
Some
of the negative feedback is a reaction to some of the risks I took with writing
style. The protagonist is childish. The protagonist refers to herself in third
person. Some of the things that happen are unlikely. Yes. Most of the criticism
are true. But that's my life—I often look back in disbelief.
What
is your message to parents of children born with Mixed Gonadal Dysgenesis? (Or,
parents with children born with an intersex condition?)
Keep calm
and let your kid have a childhood. Even if it's fanciful. There's no rush to
conform to male or female stereotypes. Or boy or girl norms.
Keep calm
and let your kid have a childhood. Minimize visits to doctors and therapists.
Make a distinction between what's medical and what's cosmetic. Hook in to a
good support group.
Keep calm
and let your kid have a childhood. Don't let your child's intersex condition be
their life. You still have parenting responsibilities. Intersex is no excuse
for being a brat.
Keep calm
and let your kid have a childhood. Help them integrate their condition with who
they are. They can handle knowledge better than they can handle secrecy.
Keep calm
and let your kid have a life. Not everyone in the world needs to know the
details of your child's condition. Not even all of your Facebook friends. Your
child may appreciate the privacy later.
What
is your message to the medical community when treating and working with
families and parents with children with MGD or intersex conditions?
Act to maintain a child's options.
Treat the patient not the picture.
Listen.
Who cares what gender the original
physician(s)
thought the child should be?
Ask the child in a situation where
they're likely to respond with the truth.
Understand that for every rule there
are exceptions.
Will you be writing your own autobiography/memoirs about
your MGD experience or your life in general?
Not until I
believe anyone would be interested in reading it. I'm happy to accept
Confessions as fictional memoir.
Can you tell us about your next book?
The working
title of my next novel is Samantha's Baby. Samantha and Melanie have
always been BFF, so when Samantha decides to marry Trevor, Melanie agrees to
act as a surrogate mother for her intersex friend. When the lab mistakenly uses
Samantha's gonadal cancer biopsies for the ICSI (intra-cytoplasmic sperm
injection), Samantha becomes the biological father of Melanie's child.
Is there a support group for parents and people with MGD?
Thank you so much, Lianne Simon, for allowing me to interview you! Zollie.
(Click book jacket graphic to enlarge)
To purchase:
*****
Excerpt
I didn’t have any clothes fit for an elfin princess, so my
cousin Kaylah let me borrow some hand-me-downs one of the Fair Folk had given
her. She shook her head as she held a white velvet skirt up in front of me. “I
don’t care if that old book says the Kirkpatricks are faie. Your face is bean
shìdh, but the rest of you is brùnaidh.”
At five I was only a little taller than my two-year-old
sister Alicia, so the clothes were way too big for me. “Please, Kaylah. The
brownies are elves too. They’re just not as tall.”
“All right, then.” Kaylah safety-pinned the white velvet
skirt to my slip, so the waist stayed up under my arms and the hem brushed the
floor. The satin sleeves of the woodland green blouse hung down past my
fingertips. She wrapped a silver lace belt around my waist twice and made a bow
in the back. A spider-silk flower went on my shoulder. I sat down so she could
tie the ribbons of starlight ballet slippers around my ankles. “There you are!”
She clapped her hands together. “Princess Grace herself doesn’t dress any finer
than that.”
Fancy clothes weren’t all an elfin princess needed to be
dressed for a party, so I sat facing my reflection and waited for my
maidservant to finish. She stood behind me in the wall mirror, intense
concentration twisting her face. I grinned as she pulled the soft foam rollers
out of my locks and fluffed, brushed, teased, and sprayed until my hair was
perfect. It wasn’t very long, but the color was pretty, somewhere between ripe
pumpkin and the gold of the earrings she clipped on my ears.
Face full of wonder, Kaylah held a glass vial before my eyes.
“There’s a river so high in the Mountains of the Moon that the water turns
silvery-blue.” She pulled the stopper out of the shiny bottle and dipped a
small brush into it. “I’m going to paint your nails with moonlight. Sit still
until it dries.”
In the mirror sat a beautiful elfin princess—golden hair
aglow, large emerald eyes, small red mouth, and rosy cheeks sprinkled with
freckles. She was the happiest elf-maiden of the realm. I stood, grabbed a
handful of white velvet on each side, curtseyed to the lady in the mirror, and
spun around so my skirt would fly.
“Pretty!” shouted Alicia, one finger in her mouth.
“Both my girls are beautiful.” Kaylah bent down and kissed my
little sister on the cheek.
“Are you ready, birthday girl?” She grabbed my hand and held
it high. “Your court awaits you, my lady.” I spun around on tiptoes, a lovely
ballerina, my shoes sparkling like stardust in the night sky.
Jimmy the Pirate swaggered into the
kitchen, wooden saber at his side and a black patch over one eye. Alicia danced
in her little pink tutu and a pair of angel wings made from coat hanger wire
and crinoline. Gladys was dressed like Dorothy from The Wizard of Oz,
red shoes and all. She had even brought Toto, a stuffed toy animal that might
once have resembled a dog. Kaylah wore a tattered pair of bib overalls, a
gingham blouse, and an old straw hat.
They had all chipped in and bought me a present. Kaylah must
have wrapped the package because the edges and folds were all straight. I
pulled the tape off, careful not to rip the paper. Inside was a new Raggedy
Ann. A squeal of delight burst from my lips, and I hugged the doll to my
breast. “Sofie! I’ll name her Princess Sofie!” I scooted over on my throne, set
her on the seat beside me, and straightened her dress.
Kaylah winked at me, set my birthday cake on the kitchen
table, and lit the candles. I blew out all five with one breath and grinned at
Jimmy. They say you shouldn’t tell anybody your wish, but he already knew I
wanted to be his wife.
The pirate grinned at me, eyes flashing, and waved a saber
over his head. “Yar! Cut the cake!”
Kaylah was the one who baked my birthday cake. I think she
got the recipe off a Hershey’s Cocoa tin. Anyway, she made the yummiest
chocolate cakes. I cut Jimmy a ragged chunk and passed him his plate.
“Princess, you’re making a mess.” My cousin, gentle as
always, cleaned the frosting off my sleeve and cut slices for the rest of us.
I was halfway through eating mine when I heard the front door
open. Ooh! Dad was home early. Seeing the little princess would make him
sad. My fork hit my lap, chocolate cake and all, and bounced to the floor. Arms
trembling, I sprang up, thinking to run away.
“No, Jamie. It’s okay. Today’s your birthday.” Kaylah grabbed
my arm and gently pushed me back down into my seat. “He should see how pretty
you look.”
Kaylah was only twelve, but she’d pretended to be my mom ever
since she was seven. My real mom home schooled Kaylah, and me, and my brother Scott
every morning. In the afternoon, while our moms worked, my cousin, and Alicia,
and I played together. Scott didn’t hang around with girls, so he went to his
pal Joey’s or played kick-the-can outside the old schoolhouse on Polk Street.
I didn’t have a magic ring to make me invisible, so Dad found
me as soon as he strode into the kitchen. His eyes—those deep wells of disappointment—locked on the elfin
princess and sucked the life out of her. “What’s going on?”
Kaylah stepped between me and Dad,
saving me from certain doom. “It’s Jamie’s birthday, remember? The kids are all
wearing costumes for his party. We were reading Old Scottish Fairy Tales
and he wanted to dress like an elfin princess.”
I peeked around Kaylah’s waist, hiding Sofie behind my back.
The air around my father seemed to crackle with lightning, but he only nodded
and smiled at me. “I got you a new softball. After your party, let’s play
catch. Okay, sport?”
So my dad played catch with the elfin princess, tossing her
the ball underhand from a few feet away. I missed the first one; it went right
between my outstretched arms. The second rolled off my fingertips. The third
bounced off my hands and hit me in the face. Boys seemed to learn right away,
but I didn’t think I’d ever be able to catch a ball. I shut my eyes to hide my
frustration, but the tears were too many.
“I’m sorry, Jameson. Are you okay?” Dad knelt down and hugged
his little princess tight, but the disappointment in his eyes hurt her worse
than the ball had. Scott said I threw like a girl, but all the ones I knew
played catch better than me. I got hurt when I played boy games. Every time.
That’s one reason I preferred playing with Kaylah and Alicia.
Dad led me back inside. While he
searched for the ice pack, I sympathized with the princess in the mirror. Her
face resembled a raccoon’s now, with a dark half-moon under one eye. Poor
girl. Another black eye. Won’t you ever learn?
* * * *
A knock on the door meant it was
almost bedtime. I put Barbie into her case and picked up my little china tea
sets. Alicia began gathering the Lincoln Logs that were scattered across the
floor. “Mom knows,” she said as she slid a box on the shelf.
“What?” I collected the dolls, and
stuffed animals, and all and put them into the closet.
“That you don’t play with your
cars.”
Every morning before Dad left for
work, I got my Matchbox cars out of their carrying case. After breakfast Mom
home schooled us. In the afternoon I played with Alicia and Kaylah. When Dad
got home, I packed the cars back into their case. Seeing me put them all into
their little slots made my dad smile. Like he thought I’d been playing with
them the whole day. After supper Alicia and I read or played with dolls in our
room.
My sister touched my shirtsleeve.
“If you’re an elfin princess, how come you always wear boy clothes?”
I glanced into the mirror. The
elfin princess wondered why, too. “I don’t have any dresses, you know. Kaylah’s
old clothes are only for dress-up, and they’re too big anyway.”
Alicia hugged me like I was her
little sister. “You can wear mine.”
I glanced at her and shook my head.
“I don’t want to wear somebody else’s clothes.”
“Mom says we’re supposed to share,
and besides, we’re twins.”
Alicia was my best bud ever, but
sometimes she said goofy stuff. “We can’t be twins. I’m seven and you’re only
four.” I picked up Sofie and put her on my bed so she could sleep with me.
Alicia held her hand above my head
and slid it toward hers, like she was measuring us. “We’re the same size and
we’re sisters.” She bobbed her head as if that settled everything.
We stood next to each other in the
mirror. Alicia really was as tall as the elfin princess. Our hair and eyes were
the same color. She was human and me part elf, but we were both girls. Not
twins, though. When I shook my head again, she pouted. “Jamie, please. I want
to wear jeans.”
She had some cute corduroy overalls
with a flower sewn on the front, but no blue jeans. What could I do? I hugged
her and said okay.
She squealed and ran to my dresser,
where she picked out a pair of jeans. Then she ran to the closet and found a
blouse like the one she was wearing. A minute later we were giggling and
jumping on my bed, dressed like we were identical twins or something. We
scrambled to get ready for bed when someone knocked on the door again.
Mom stared at me for several
heartbeats before she tucked me in, but she didn’t say anything about Alicia
and me wearing matching nightgowns.
* * * *
The doorbell rang a third time. I
glanced at the bathroom door, wishing Kaylah would hurry. Alicia peeked around
the corner as I took another step across the living room. “You’ll get us in
trouble,” she whispered.
“What if it’s Aunt Elizabeth?”
She’d be mad if I didn’t let her in.
“Kaylah said never, ever answer the
door by yourself.” She shook her head in emphasis. “Never.”
A fist pounded on the door,
insistent. What could I do? I turned the handle and pulled.
The tall lady on the porch smiled
and leaned close. “You must be Alicia. Is your mother home?”
Never, ever talk to strangers.
That’s what my mom always said. “No, ma’am. My name’s Jamie. Mom’s not home.”
Alicia poked her head around the
corner, and then ran to stand next to me. “We’re twins.” She tugged on the
sleeve of my dress, beaming. “See. We have the same clothes.”
I stared at my sister. She always
insisted we dress alike. Our hair was even cut the same. In her mind, that was
enough. That was okay, I guess. We liked each other better than any real twins
I knew.
The lady studied her notebook for a
moment, frowning. Then she shook her head. “Our records indicate a
nine-year-old boy named Jameson and a six-year-old girl named Alicia reside at
this address.”
Always helpful, Alicia said, “Jamie
used to wear boy clothes.”
“Who’s there?” I turned to see
Kaylah approaching, her face pale. Was she sick?
The lady
held out a hand. “I’m Stephanie Pollock, from the school board.”
The elfin princess pulled up the hood of her forest green pea coat
and braced herself against the wind. North Carolina winters didn’t chill to the
bone as fast as the bitter cold of northern Illinois, but after a year in
Miami, my blood ran thin. I studied the house, all strung with Christmas
lights, and imagined my father waiting right inside the front door. For years
I’d been afraid of him, or at least afraid of making him sad. For months my
anger had smoldered. His displeasure would still cause me pain, but not like
before. Some part of me insanely expected him to be proud of his little
princess for refusing to further sully her honor with Things Boys Do.
I opened my Bible and read in the
dim afternoon light, sheltering the book against the wind. All the calculations
based on genetics, gonads, genitals, and gender came down to one thing—how to
play the hand I’d been dealt. The chief end of Man was to glorify God and enjoy
Him forever, but thus far my life had been consumed by questions of gender. I
longed for God to make something out of what remained.
“Lord, please make Dad see that I’m
a girl. Help him understand how much it would mean to me if he told me it was
okay to be his daughter. Please grant me favor in his eyes so I can go stay
with the Gillespies.” The little princess dabbed at her eyes. She didn’t want
to walk in with her mascara all ruined. I wiped my eyes again and started up
the drive. “Please give me the courage I need to stand my ground. Please grant
me peace, Lord. Thank you for making me Your child.”
As I walked up to the house, one of
the garage doors opened. A moment later our Skylark backed out into the
turn-around area. Dad got out and began walking back toward the house, leaving
the car running. His head swiveled my way when the gravel under my shoe
crunched. “You should be inside, honey,” he said.
His tenderness threw me until I
realized he had mistaken me for my sister. Even in the twilight he should have
at least noticed my height. Way too short to be Alicia.
“It’s Jamie, Dad.”
“Jameson?” I stood still while my
father studied me. “Have you no shame?” Disgust filled his face and his voice.
Shame? Me? What about your
stupid list? I bit my lip hard and counted
heartbeats, trying to hold back my anger. “No, Dad. I gave that up when I started
on your list.”
A short, sharp bark of a laugh
burst from my father’s lips. “Right. I can tell you’ve been diligent. Dress
like a whore. That was item seven, wasn’t it?”
Godliness with contentment is great gain. Peace and warmth flooded me. I was still frightened of my
father, but some tipping point had passed. In a softer voice I said, “I did
more of the list than was right. Would you ask Alicia to go to bed with
someone?”
“She’s not a boy.”
My father professed to being a
Christian, but even an unbeliever should have seen the hypocrisy in expecting
your sons to be promiscuous and your daughters to be virgins. “Neither am I!” I
didn’t exactly yell, but Mom would have slapped me for the tone of my voice.
Dad only stared, anger smoldering
in his eyes. “I should never have allowed you to go to school before having
surgery and at least a year on testosterone.”
Surgery? You can’t be serious. “Dad, I—”
“No, Jameson. As of now you’re
grounded. Ask your mother to give you a buzz cut and find you some decent
clothes. You’ll stay home until we get this straightened out. I’ll find you
another doctor.” He nodded as if everything were settled. “We’ll get you back
on track.”
“No, Dad. I’m a girl. And I’m not going to talk to
any of your stupid doctors.”
Dad didn’t lose his temper, but his
face grew taught. “Do as I say and go in the house. Now.” His voice was even,
but his eyes burned.
Lord, please grant me courage. I took a deep breath and exhaled slowly. “No, sir.”
Smoldering blue eyes studied me as he pulled off his belt. He’d
strapped my brother once. I’d forgotten why. Scott had run off and joined the
Army afterward. He had never come back.
Sad emerald eyes battled Dad’s blues, raining pity down on this
stranger with the belt. My dad would never punish me for being a girl. I
met his stare for as long as I could, but when the tears started, I squeezed my
eyes shut and waited, legs shivering.
The breeze picked up, rustling the branches and chilling me. The
evening was turning cold, but my cares and fears drifted away on the wind. I
might not embrace the pain, but I would bear it.
Lord, please reconcile us. Even now.
# # #
End Excerpt
