disabilities

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…