Browsing Tag

disabilities

Guest Posts, Kindness, parenting, Self Love

Golden Repair: A Disfigured Mom’s Quest to Raise a More Loving Child

February 8, 2021
god

By Melissa Akie Wiley

She looked at my face with disgust. My infant daughter cooed. I had just placed the baby into a shopping cart when the woman first approached. A stranger. She came too close. Staring at my daughter.

“Your baby is perfect,” she said. “She looks like a doll.”

I thanked her and pulled the cart away. Then the woman looked up at me and froze. She was silent and scurried to her car, as if I might run after her. I stood in front of the grocery store with my daughter. The automatic doors opened and closed but I didn’t move. My baby smiled. Too young to know that she is beautiful but her mother is disfigured.

My daughter is 2 years old now. She has round blue eyes and blonde hair. Her face inspires joy. My face is lopsided and scarred. It was a dog attack. I was five. I am not afraid of dogs. People always seem more concerned about my feelings toward dogs than they do about me. I have had over thirty surgeries and they helped. But my face is instantly noticeable. And the world is bothered by asymmetry and imperfection. I am also part Japanese and part white. My skin is too pale and my hair is too dark. People tell me that my daughter is perfect and then they say she looks nothing like me.

I have never looked like anyone. Bi-racial and disfigured is a cocktail of isolation. In childhood, I left my hometown of Boulder, Colorado every summer to visit my Japanese grandma in Tucson, Arizona. One summer I begged her to take me to a crowded shopping mall to buy doll clothes. I was 7 years old.

“Did you see that disgusting girl?” a woman said then.

She was talking to her daughter and looking directly at me.

The girl met my eyes and glared. Her hair twisted in a tight braid. I dreamed of ponytails but didn’t dare wear my hair up. I looked at the girl’s flawless appearance and sank into shame.

“So gross. I can’t believe she even came out of her house. She’s going to give me nightmares. She’s a monster,” the girl said. She was my age and already this callous.

The mother hugged her daughter and shot my grandma a scowl.

Then she said, “I’m so sorry, sweetie. People should know better but she’s clearly with some immigrant nanny who probably doesn’t even speak English.”

We stood in silence with our doll clothes. I felt devastation that my grandma should suffer due to my deformity. I tried to wedge myself behind stacks of toys to prevent further commentary. My grandma adjusted her glasses with shaky hands.

“I am sorry I don’t speak good English,” she said.

That day she bought more doll clothes than she could afford. She had worked as a hotel maid and saved tips in the form of crisp dollar bills. She set this carefully preserved money aside for me. When we approached the counter to pay for the items, the cashier said, “what’s wrong with her face?”

“Nothing wrong with my granddaughter,” she said, in broken English.

Once I asked my mom if she was mad at God. We were sitting in my grandma’s backyard in Tucson. Looking at the night sky. It’s easier to talk about God’s failings in the dark.

On the day of the dog attack, she had only looked away for a minute. Long enough to drain noodles from a boiling pan. When she turned around, the yard lay covered in blood and my face was gone.

“No,” she said. “Because you are extraordinary. You have shown me what it is to live next to suffering and become truly beautiful.”

People ask how I survived. The answer is my mom.

I want to tell her that I am not mad at God because he gave me her, and a good mom is worth more than a pretty face.  I am thankful I learned this lesson in youth. When I still have more years on the earth with my mom.

Tragedy in childhood is a spiritual offering. Early redemption creates a fast track toward a more meaningful and grounded life. I shed the frivolousness of appearance, money, and status like a butterfly discards a cocoon. Because when the world rejected me, I sheltered only with the tender hearted and my own soul. And if we’re lucky, that is where we all eventually end up anyway.

My daughter will grow up with a disfigured mom.

On my daughter’s first day of Kindergarten, middle school, high school, and college, I will take photos of her and children will stare. After I am gone, they will ruin these moments of childhood by asking what’s wrong with her mom. I know this because these moments were taken from me, too.

I will want to stay in the car to spare her. But I will not. Instead I will show up for everything. And when we hear the comments, I will tell her that the Japanese have a word, Kintsugi, which roughly translates to golden repair. It is the Japanese art of taking broken pottery and patching it with gold so that the imperfection is illuminated instead of disguised. I will tell her that my mother’s love was the glue that made my flawed life golden. And my love will hold her together, too.

This pain will make my daughter kind. It will teach her that the world is unduly harsh because we are all more broken than whole. And she will learn that love is restorative and the only thing of true beauty. She will inherit this wisdom in childhood. When we are both still young enough to walk the earth together.

And when people ask, I hope she says, “There is nothing wrong with my mom”.

Melissa Akie Wiley is a public servant and fierce local government leader by day and a mother and writer by heart. She strives to infuse joy into all aspects of service by living with authenticity and resiliance. After overcoming a disfiguring childhood dog attack, Melissa committed to a life of repair and love. She holds a Master’s Degree from the University of Pennsylvania and lives with her husband, daughter, and dog in Denver, Colorado. She is the director of the nationally-recognized, Denver Peak Academy and is currently working on her memoir.

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We love this book for so many reasons! The writing is incredible, the story is important, and seeing what life looks like when you survive the unthinkable is transformative. If you haven’t already, pick up a copy of Sanctuary, by Emily Rapp Black. Purchase at Bookshop.org or Amazon.

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Anti-racist resources, because silence is not an option

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Click here for all things Jen

Guest Posts, love, Mental Health, sisters

Piece

July 28, 2017
beaten

CW: This essay discusses sexual assault. If you or someone you know has been assaulted, find help and the resources you need by calling the National Sexual Assault Hotline at 1-800-656-4673, or visit www.RAINN.org.

Note: most names have been changed.

By Noreen Austin

Gere’ December 1993

My sister Gere’(Jer-ray) has been missing from her North Hollywood, California group home for several days. Raoul, her counselor, a stocky man, coiled with a black belt in martial arts, has the skills to survive in this socioeconomic oppressed part of town. He cares for the mentally disabled. His home is a place of refuge in hopelessness. But he can’t keep Gere’ safe after all, and he files a missing person’s report with Los Angeles County.

My father calls me in my Northern California home from his apartment in Southern California and explains, “She was badly beaten.” The police had interviewed Gere’. They told Raoul they had never seen anyone so severely beaten and still able to walk.

“She wasn’t taken to the hospital?” I ask.

“She bolted before the ambulance got there.” My father says.

Gere’ is 29-years old, has Tuberous Sclerosis, a gene mutation that causes tiny benign tuber-like tumors to grow onto the ends of the synapses in her brain. Autism, learning disabilities, hyperactivity, anger and defiance behavioral problems, ash-leaf shaped skin pigmentations, and seizures are a few of the symptoms of this condition. Some people with TS don’t have seizures. But Gere’s started when she was eighteen months. Each seizure causes brain lesions, which contributes to her cognitive decline. It’s easy for me to understand her confusion. The police are there to arrest bad people. The police are talking to her. It’s when the police leave the room to get some information from Raoul that Gere’ runs. Continue Reading…

Guest Posts, The Body, Young Voices

What Happened To Your Hand?

December 14, 2016
amputation

Note from Jen Pastiloff, founder of The Manifest-Station. This is part of our Young Voices Series for Girl Power: You Are Enough. We are always looking for more writing from YOU! Make sure you follow us on instagram at @GirlPowerYouAreEnough and on Facebook here.

By Julia Betancourt

I wasn’t going to talk about my residual limb when I visited my kindergarten teacher in her classroom. At least, not until a small blonde girl came and tugged on my skirt while I was greeting my former teacher, Ms. Restrepo.

“What happened to your hand?” she asked.

“Oh,” I replied. I stared at my left arm, which extended to just below the elbow—the “hand” she was referring to, nicknamed “Army,” meaning little arm. “I was born like this,” I said, lying to her because I didn’t want to go into the extraneous story about the accident. I turned to face a boy and his three friends.

“Does it hurt?” he wondered. I shook my head.

“How can you write?” another child yelled.

By this point in time, I noticed that most of the class had gathered, and they were all asking me questions I didn’t want to answer. However, I couldn’t just tell the children to leave me alone, because they were six. Furthermore, if I told them to leave me alone, they might be afraid of other people with amputations. Based on their curiosity, most of them probably hadn’t even seen anyone with a limb difference. Whatever I did now could potentially affect the way they thought about amputees for the rest of their lives. Continue Reading…

Guest Posts, No Bullshit Motherhood, parenting

Past Imperfect

November 1, 2016
year

By Hazel Donovan

Every year it’s the same. I walk into the school conference room carrying a binder and a single question. Teachers and administrators group in a defensive formation, a single chair waiting across the table. Like a criminal facing the parole board, I take my designated seat, eyes on the neat white stapled pages arranged like place settings.

A quick glance at the ring of faces — tight smiles, dropped eyes — and I have my answer. In spite of everything, nothing has changed. Hope flutters out the window with the spring breeze.

I blink back tears. Crying in an IEP meeting was expected in Kindergarten, the tissue box at the ready. They tolerated it in elementary school, disapproved of it in Junior High. My son’s a freshman now, and the faces at the table are blank. There’s a quarter moon mark where my nail digs deep into my finger, the pain a necessary reminder to focus. The faces start speaking, and the words are familiar but like a pair of dress shoes, never quite comfortable.

Your son is too loud, distractible, annoying to the other students.

The buzzing starts in the back of my head. The build-up to a scream. Continue Reading…

courage, Family, Fear, Guest Posts, motherhood

(Dis)connections

November 29, 2015

By Lisa Porter

Daisy loves to wear wings and fluffy dresses. When she encounters someone that she deems to be filled with interesting energy, she hugs without asking, or requests a hug and invites engagement in a world full of disengagement. She admires beautiful hair, mermaid tails, cute babies, and dresses that are ‘just like a wedding.’ Her conversations are most frequently with an old sewing machine, the ‘dipper’ (stars), and the crows in the fig tree. She doesn’t abide boundaries based on social norms. Daisy is 11. She is one of the most awake beings that I know. Living with her has forced me to be curious about the brain and the concept of plasticity. Because of Daisy, I believe in everyone’s capacity to change, adapt habits, and learn to communicate without words. She has converted me into a missionary, preaching the overlooked wisdom of the sensory system, as I observe her struggle to manage all of the typical sensory input that I unconsciously process.

The disabilities emerged slowly. She missed milestones, started wearing glasses at four months, had eye surgery at seven months, didn’t crawl, and didn’t walk until she was almost two. I remember the day when it really sunk in…the day that she started at a school for two year olds with special needs. We had moved from New York City to San Diego for my academic job when she was a newborn. This change was supposed to open the ‘perfect’ chapter in my life, transitioning from the professional theater to the academic and making room for this baby. Instead, and on the day that she started at a ‘special’ school, sadness took me hostage. I remember thinking, anything other than her intellect. Today, she is officially labeled with an intellectual disability, also known as Autism Spectrum Disorder. In terms of how American society traditionally measures achievements, potential, and quality of life, she is ‘less than.’ All of the words that begin with ‘dis’ sting with the stigma of ‘less than.’ Disappointment, dismay, disparage, disarray, disgust, disrepair, disillusion, disregard, dismantle, disruption.

The completely normal pregnancy, birth, and first few weeks of her life, led me to believe I had a shot at a typical parenting experience. I remember asking at the moment Daisy was born, ‘does she have ten fingers and ten toes?’ And indeed, she does. I knew parenting would change me forever, just not like this, not like this. Nine years after that first day at the special school, my worst-case scenario is now my daily life.

My husband and I took a trip to Berlin when Daisy was about five. Until then, I had never fully understood that during the Holocaust, those with disabilities were killed first and without delay. The Nazis dismissed them as worthless and unsalvageable. I remember that realization as a moment of deep clarity about the intensity of the struggle ahead. This was a time to transform into a warrior who could advocate for my daughter, leading us into the battle. Continue Reading…