I originally wrote this piece about disclosing disability for Ania Bula’s blog “Splain You a Thing” in the early days of my grappling with the loss of dance as a result of my disability. Since then, my baseline ability has fluctuated and I’ve gone through phases where I could dance a handful of songs in a night with specific, mindful dancers, and other times when I could barely walk. But even five years later, this piece still resonates strongly with the complex evaluation process necessary to safely disclose a disability, and the grief that comes when the onset of disability is later in life.
CN: ableism, chronic pain, toxic positivity
With every new person I meet, I have to gauge just how much to tell them about my disability. I try to be as open as possible about my health issues because I want to reinforce the idea that people who look like me- young, relatively fit, no noticeable limitations- can also be disabled. But being open about my disability means opening myself to potential scrutiny of my body, my diet, my medications, my exercise routine. Any decision I make about my physical health becomes fair game for intrusive questions. Until I get to know a person better, I have to assume they will default to treating me as if my health history is in the public domain.
With a disability as invisible as mine, I do have the option of hiding it completely if I think outing myself could be a danger to my mental or physical health. But I may not know that the person is capable of harming me until it is too late. I have to try to guess based on each person’s personality whether or not I can trust them.
I used to work as a cashier and I volunteer frequently at the desk of a weekly tango dance, which means I sometimes encounter hundreds of new people in a single day. I do this personality scan for each person that hands me money. But even if I get a bad scan, sometimes I still don’t have choice but to out myself. Customers are already prone to thinking only about themselves, which means it’s highly unlikely that they would ever anticipate accommodating me. If I can’t do something a person like me is expected to be able to do, I have to assert myself and ask for help directly.
When I am forced to disclose my disability, I get asked questions. “Have you tried turmeric?” “Have you tried collagen supplements?” “Do your wrist braces help?” “Did you injure yourself dancing?” “Is it because of your job?” “Are you getting better?” “Then how come you are working here?”
If I get a bad scan, I may flat out lie to them to stop the line of questioning. If they pass the scan, I give them the details that I feel the most comfortable with. More often than not, they fail the scan, and I give whatever answer I think is most likely to end the conversation the fastest.
“Are you a dancer?”
I am a dancer. Or I was. Or blah blah blah philosophy shit I’m still a dancer in my heart, whatever. I was a dancer, I loved to dance, I injured my sacrum, and my sacrum didn’t get better. I stopped dancing to protect my sacrum, but chronic pain decided one central issue was not enough and sprung up in the rest of my joints in addition to being in my hips and back 24/7. Over three years later, I’m still not dancing.
Dancing was a significant part of my identity. It was a means of expression, it was a source of intimate connection with my friends and community, and it was an outlet for my intense love of music. Joining the dance community taught me how to trust, to be close, to be vulnerable with another person, safely. It helped me heal trauma. It brought me irreplaceable friendships. It was possibly the best thing that ever happened to me.
When someone asks me, “When will you be able to dance again?” I answer with, “I don’t know,” conscious of the pain in my voice, and in my hip.
I have found ways to cope with the loss. I’ve delved into the art of DJing, which allows me to connect with an entire floor of dancers, as a kind of surrogate for dancing myself. I found self-worth and life structure in hosting and planning dances and I revel in the irony that I’m now the head organizer of an event that I cannot dance at.
But my primary coping method is to pretend that I’m okay. If I disengage from the constant drive to dance and carefully and constantly redefine myself as a non-dancer, I can almost convince myself that I’m fine and that not dancing is not the end of the world.
But, every once in a while, a song will leap out at me. The song tightens around my heart and beat by beat it pulls at each one of my limbs as it screams THIS IS WHAT YOU ARE MISSING. The song yanks my heart out of my chest, still pumping and attached to my lifeline and my heart rides the powerful waves of the music up to the ceiling until I can’t bear to be stretched so tight and my heart snaps back into my chest with a horrible, empty thunk.
I breathe heavily and try to remember that I am fine.
At work one day, I spotted a customer who I’d already scanned and categorized as “douche bag.” Somehow, he knew about my injury, though I had no memory of telling him. Predictably, he asked one of my least favorite questions, “Is it getting better?” I said what I usually say when I don’t want to talk about my body: “A little bit.”
His next words washed over me like waves, knocking the air out of my lungs, disorienting me. The first wave came and went and then another came and I was submerged again, unable to come up for air.
“You can heal from anything,” he said,
My disability is genetic. My mother is in her 70’s and she’s had varying degrees of chronic pain since she was 20 years old, just like me. There is no cure and most of the treatments take years of management to be effective if they are at all. I feel in my bones the knowledge that I am at the mercy of my body and will continue to be so perhaps for my entire life.
“The power of dance really shows you that,” he said.
This man did not know that I was a dancer. He did not know that he was taking my biggest loss, shoving it in my face, and calling it a cure. Dancing is dangerous for me. If I were to dance again, it could re-injure me, it could put me back months in progress that was mind-numbingly slow and painful to achieve, it could skyrocket my pain and tension, it could reduce my ability to work and maybe even rid me of the ability to walk.
At night I dream about dancing and I can’t tell which dreams are more painful, the ones where I dance like I am made of light and don’t spend a single moment thinking about my body’s limitations but wake up heartbroken to find it wasn’t real, or the dreams where even though I’ve escaped from my grinding reality of constant pain for a beautiful fantasy world, I still cannot escape the calculation, the worry, the inhibition of managing my pain, and I don’t dance, even in my imagination, because I’m scared that it will hurt.
“You just have to open your mind,” he said.
I wanted to laugh and scream at once. To think that the cure for cancer, fibromyalgia, MS, major depression, all of it was sitting there in front of us the whole time! All of those people, hurting and fighting and praying and dying. They just needed to open their minds!
He looked at me, expecting a reaction I think, though, in my state of mental turmoil, I couldn’t tell whether he was looking for positive affirmation or evidence of control over me. I deal with a lot of crappy customers, and I’ve mastered the neutral smile and nod, but I couldn’t even look at him. I bagged his groceries, fighting back tears (as well as the urge to put my hands around his throat), and got him out of there as fast as I could.
People with disabilities constantly apologize for their level of ability, for taking up space, for utilizing more or different resources. I have fought hard against this reality, reminding my friends that we are not less lovable, or less important, or less beautiful. I have struggled to allow these ideas to sink into my own mind. I have fought with myself to be whole, to take up the space that I deserve, to ask for what I need unapologetically. I have had to work hard to love myself, to love my disability as myself.
But this body is so tiring to occupy. Thanks to my non-stop pain, there are chemicals produced by my body that increase my risk of depression and other health problems. My life has been hijacked by chemistry and tissues and bone structure working in perfect unison to make me miserable. Pain sends a signal to my brain saying, “Something is wrong. Please make it stop,” and sometimes it feels as if my whole body is screaming, “Make it stop make it stop make it stop” and it doesn’t. Ever. My whole being will shake with the desire for release, to get better, even just a little.
How could I allow myself to think that my life is not my own because I have not opened my mind enough? How could I let that thought take root in my mind for even a minute; that I could have it all back if I truly wanted it if I would just change what I’m doing, stop putting myself through this misery? How can I believe that my suffering, my loss, is my fault?
How can I be whole if this is true?
Each time I open my mouth to reveal the uncurable health condition that my entire life is built around, I don’t just risk rejection from my current audience. I risk denial. I risk dismissal. I risk yet another person reflecting to me that my body should be a certain way, when it is not and can never be.
About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. She specializes in educational writing about civil rights, disability, chronic illness, abuse, and Dissociative Identity Disorder. Her work has been published in Ms. Magazine blog, The BeZine, and Splain You a Thing and in 2022, she released a self-published book of poetry, “Pet: the Journey from Abuse to Recovery“. You can find her @KellaHannaWayne on Facebook, Instagram, Pinterest, Medium, and Twitter.