By Dr. JJ Whicker – August 23, 2021
My PhD is in Disability Disciplines. So, while I clinically practice as a pediatric audiologist, my education goes a little farther in terms of what I know professionally and what I deeply care for. This post is about that which I am passionate. It’s a post about what makes me vulnerable as a clinician and what makes me cry in front of parents. It’s a post about why I think there is still a lot of work that needs to be done to change culture and our way of perceiving what’s normal and what’s not.
In the first year of my PhD program, I learned about laws that were made which intentionally targeted and discriminated against people who looked different. Though it was not their official name, they were referred to as the Ugly Laws. The intent was to rid the streets of the poor and homeless, and individuals with “visible” disabilities, who were begging for food, money, and shelter. The Ugly Laws made it legal for police to physically remove people who looked different from the street, because they were “indecent”. Believe it or not, these laws were not fully revoked until the 1970s.
This dark history of our society is something that infuriates me. It infuriates me, not only because it’s wrong, but because in my line of work I have the privilege of working with children who look different all the time. Nearly half of children born with craniofacial differences have hearing loss, whether fluctuating, or permanent. When I learn these details of disability history, it’s patients with craniofacial differences, in particular, who come to my mind when I think about the kind of world in which they have to grow up. And I worry. For, while these Ugly Laws are all repealed, there can often be internalized ugly laws that are ingrained in people, young and old: societal perceptions and beliefs about what normal should be, and what it means about individuals who do not meet these arbitrary criteria.
One of my first pediatric patients in audiology school was a little baby girl with Pfeiffer syndrome: a rare genetic condition in which premature fusion of the skull bones occurs. Children with this genetic condition have different head shapes, bulging eyes, and high foreheads. She had permanent conductive hearing loss. I remember loving her instantly, but I could tell her mom was hesitant to let a student interact with her. She was defensive for her baby, but I understood. This mom was in a vulnerable position, exposing the care of her daughter to people whom she did not know, worried about how we might perceive her, how we might treat her daughter differently than we would any other patient who did not have craniofacial differences.
My own exposure to differences in appearance started young. I have a cousin, Katie, with Treacher-Collins syndrome. This syndrome is a rare genetic condition affecting how the bones of the face and head are formed. My cousin does not have cheek bones and is missing both of her ears. She relies on a tracheostomy tube to breathe. She grew up in a loving family, but endured a lot of bullying in school, and today suffers from severe depression – a depression that is masked in the way she advocates for herself and other children. Despite my own openness to differences, I remember having my own hesitancies and biases when interacting with her when I was younger. I assumed she was developmentally delayed and couldn’t think for herself. I assumed that her parents needed to speak for her, or relay communication for her. As a result, I minimized how much I interacted with her the few times I saw her in childhood (her father was in the military, and they never lived close by). Of course, as we grew, I came to understand just how independent Katie really is. She is feisty. She is passionate. She loves animals. She’s adventurous. She is now a close, personal friend and partner in advocacy, in addition to being my cousin, and it’s hard for me to admit to myself that I once thought in my naivety that she couldn’t be any of those things to me. I love her more than words can say.
Since the beginning of time, it seems, the world has idealized the healthy human body to be symmetric, with athlete capability and look, topped with one way of thinking, communicating, and doing. Anything different has been demonized. Have you ever noticed in children’s stories, cartoons, and films that villains often look different than the heroes? We call them ugly – but are they ugly? Or is it just their actions that are ugly? Why do we associate ugliness of personality with physical appearances?
And can we stop?
One of my worst memories is working with a cute little Kindergarten-aged boy who is Deaf and used cochlear implants to learn and communicate using spoken language. One day, he was talking to me about Harry Potter, and we were talking about the notorious villain, Voldemort.
“He’s a bad guy”, said my friend.
“Yes, so bad!” I replied enthusiastically. “And he’s so scary – he has no nose!”
The moment those words were out of my mouth, I pictured Katie, and I pictured my patient with Pfeiffer syndrome. I also pictured my patients with Alpert’s syndrome, Pierre-Robin syndrome, cleft palates, Down syndrome, Stickler syndrome, CHARGE syndrome, Nager syndrome, Noonan syndrome, Pendred syndrome, Usher syndrome . . . and I felt so incredibly bad. Why would I ever say to a child that someone is scary because they have no nose? How often had I done that before without thinking? What bias exists in me to assume that because someone looks different means that they’re a bad person?
I write all of this, not to bring darkness, but to shed light on something that still needs resolved. The 2021-22 school year starts for my children today, and I want them to have someone different in their classes with whom they can make friends. I want them to learn early that it’s more normal to see someone looking different than it is to only see everyone looking the same.
Can I say that again? It’s more normal to see someone looking different than it is to only see everyone looking the same. In the history of the world, there has never been a time when 100% of the population had no visible disability. Yet, it took nearly 2000 years A.D. to pass laws which stop discrimination against people who look different, who feel different, or who act different.
When I see children who look different, all I see is their desire to laugh, to love. I see their need for safety. I see their devotion and affection for their family members. I will never forget the words of a parent to me about her own child: “Underneath all that stuff,” she said, “is a child who just wants to play.”
Here at Little Heroes, our goal is to give children the chance to play, no matter their differences. If you are worried that your child is being bullied or needs emotional support, please reach out to the resourced pasted below.
http://www.thecareproject.com/about/
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