Browsing Tag

disabilities

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…