GUEST POST: Why It’s Hard to Reveal My Disability to Strangers

By Kella Hanna-Wayne

A dancer on a dark background with title of post in white

CN: ableism, chronic pain

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, I may still have 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, I give them the details that I feel the most comfortable with. More often than not, they fail, and I give whatever answer I think is most likely to end the conversation the fastest.

“Are you a dancer?”

“….No.”

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.”

My disability is genetic. My mother is in her 60’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.”

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.”

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?

 

Bio: Kella Hanna-Wayne is the creator and writer for, Yopp!: a social justice blog that connects education, critiques, calls to action, and personal stories into one resource to lift up marginalized people and educate non-marginalized people on how to help them. For fun, Kella organizes and DJ’s at an Argentine tango dancing event in her hometown of Eugene, Oregon, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on facebook, twitter, or Instagram.

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GUEST POST: Why It’s Hard to Reveal My Disability to Strangers
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4 thoughts on “GUEST POST: Why It’s Hard to Reveal My Disability to Strangers

  1. 1

    Maybe I misunderstood, are you characterising a bad back as a disability? I guess technically anything that impairs movement is a disability but usually we reserve the term for people who are registered disabled. That wouldn’t usually be the case for such a condition but if it is then just let me know.

    Don’t get me wrong, I hope your back gets better and it’s a pity you can’t dance but let’s not dilute the term for people who have been assessed as disabled by medical professionals.

    1. 1.1

      I had no Idea the Disability Gatekeepers made house calls. How easy and convenient.

      I apologize that i neglected to submit information on my disability to your personal disability registry. I know it is customary to provide documentation of disability registration and a full set of medical records in the event of using the word “disabled” to describe yourself,” and I know it must be difficult to take the word of a not officially registered disabled person that the years of treatment they’ve received was in fact done by medical professionals, because if it was, surely they would have informed you. I apologize for the inconvenience.

      However, i have double checked my records and it seems you received several notifications of my disability from the proper authorities. Perhaps you only skimmed the document in question and missed those specific pieces of information. You’ll want to re-read the above article to confirm of course. I’ll wait.

      Ready? Ok. Several items of interest you may have noticed upon re-reading:

      Item 1: “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.”

      Item 2: “My disability is genetic. My mother is in her 60’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.”

      Item 3: “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.”

      I hope that that reading the words that i wrote will suffice as evidence that i am in fact disabled, even though my article makes no specific mention of my being “registered disabled.” i hope that you can let it slide this one time and grant me the respected and privileged title of disabled from this point onward.

    2. 1.2

      You must be new.

      First of all, the medical model of disability is not actually useful. Second, no one is required to disclose their private medical information publicly in order to satisfy your curiosity nor to have to validate their identity as disabled. This kind of gate-keeping is exactly why many people including myself have trouble accessing necessary accessibility and services, or getting the support we need.

      Now let’s take a moment to unpack your implication that a “bad back” is not sufficiently serious to be considered a disability. A bad back usually means chronic pain, which is known to impact sleep quality which can in turn lead to cognitive impairment. Additionally, chronic pain is a massive energy drain making even simple tasks way more complicated. A bad back can limit mobility making movement difficult, limiting your ability to bend, which in turn can impact your ability to perform basic self-care duties like putting on socks, cleaning, can limit your ability to perform work tasks depending on your job.

      Disregarding back pain is part of why my spine and hips are as damaged as they are. No one took it seriously enough to question why a teenager would have back pain.

      Disregarding chronic pain is one of the reasons why getting access to accessibility devices, and full coverage for my medication has been difficult.

      Now on to medical professionals: medical professionals are some of the worst gate keepers. There are endless studies confirming that their biases directly impact patient care and outcomes negatively. Hell this very blog is populated by multiple individuals who are facing severe impairment BECAUSE doctors decided we weren’t actually disabled. There is the person who is blind because doctors ignored them, the one who walked on a broken ankle for five years, the one who almost needed a hip replacement at 19, and that’s just the stories that actually make it to the public eye. My inbox is filled with countless others.

    3. 1.3

      And that right there is why we need to have the first part of this post in the public discourse. Why do you think it’s okay to ask for the medical details of her condition or diagnosis? Especially after reading about exactly why doing so could be harmful?

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