Fix by J. Albert Mann is on sale on May 11, 2021. Order it here!
By J. Albert Mann
You have such a pretty face.
I doubt there is a physically disabled woman alive who hasn’t heard some version of that line. It is meant as a compliment. I am meant to thank whoever says it to me. And I have. Over and over. All my life.
Thank you…for looking past my body to find something you can honestly compliment.
Thank you…for taking the time out of your busy day to make me feel “good.”
Thank you…for overcoming the pity you believe it is that this face ended up on this body.
Thank you…for setting me up so that I need to thank you for making me feel shame for who I am.
And I have.
Felt shame for who I am.
So much shame.
spilling from my pores,
my mouth, my
Over the years, I came to believe it was the shame that twisted my spine into a pretzel, taking with it my ribs, my scapula, my hips. I had done this to myself.
This led me to the next obvious conclusion. If only I had been a better person this never would have happened. That is…if I wanted to be deserving of friendship, employment, basic human decency I had to be better. I had to be nice. So, I became nice.
Jennifer Albert Mann is nice.
She is so nice.
Oh, Jen, she is nice.
Even my family joined in,
But there was a problem. A big problem. I had heinous thoughts. Despicable thoughts. Vile thoughts. And I hated people because people made me hate myself, especially people who told me I had a pretty face. This included the anesthesiologist from my first surgery, who reassured me [as he put me under] that I had nothing to worry about if the surgery went wrong since my husband had already committed to me [meaning, committed to this body] and he [my husband] had at least gotten a pretty face out of the deal. Instead of counting back from ten as he told me to, I fell asleep imagining vultures swooping down and pecking out his watery blue eyes. I was not nice.
Due to the mind-bending notion that everyone thought I was the sweetest thing on earth set against the backdrop of my very dark heart, a new version of my old thought process emerged. I was once again, doing this to myself. Each time someone cooed how nice I was, and I immediately visualized a truck splattering their guts across an eight-lane highway, I felt my lordosis deepening, my kyphosis looping, my spondylolisthesis slipping.
There is a name for this process. It’s called internalized ableism. It is the process of taking in the ideas and prejudices of society—that I am undesirable, tragic, something to be shunned and/or pitied unless I’m able to make others feel good about themselves—and incorporating these ideas into your very cells. “I am disgusting” becomes as fact-based as “rain is wet.” And not only am I disgusting but so is everyone like me.
Everyone like me.
In the end,
is who saved me.
A few weeks following one of my surgeries, the doctor’s nurse called. She asked if I would be willing to speak to another scoli pre-surgery. Give them the lay of the land. Answer their questions. Be supportive.
Sure, I could. (Nice people always say yes.)
This is the day that everything began to change. It was the day I met another me. Together, we talked pain. We talked braces. We talked cobb angles and instrumentation and putting on shoes and having sex and internal claustrophobia and reading while flat and never sleeping on your stomach. We talked shop. And then we talked to others…more others…and even more others, discovering an incredible truth.
Rain wasn’t wet after all.
Over time, skilled doctors have rearranged everything inside me. Today, my torso is filled with metal, half my ribcage is gone, my belly button sits far to the left, I experience loss of feeling over much of my body while also battling chronic pain. My disabilities have moved (mostly) from visible to invisible, and I never hear a word about my face. But my scoli/disability community has also rearranged everything inside me. On that long-ago day, I began a new process—the slow and difficult procedure of wresting the negative self-images embedded, literally, in my bones.
Community is power.
Community is hope.
J. Albert Mann is the author of Scar: A Revolutionary War Tale, What Every Girl Should Know, The Degenerates, and Fix, among other books for children and young adults. She has an MFA from Vermont College of Fine Arts in Writing for Children and Young Adults.