Am I Obligated To Disclose My Invisible Disability?

Frequently, when people who know about my accident ask me if it hurts still, I deflect or spew platitudes and just say, “Oh, you know.” I don’t say that physical discomfort has been a near constant companion.

Aug 22, 2014 at 5:00pm | Leave a comment

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Pre-disability status: Speed hiking 18 miles in California without a second thought.

I became suddenly disabled when I was 22 years old, right before I graduated from college. Being a young, outdoorsy, adventurous young person, you always heard about the statistics for the adrenaline-junkie activities you enjoy. You never expect to be the one with a dozen fractures, two black eyes, being wheeled back for another surgery after you’ve lost too much blood and are talking nonsense on morphine. 
 
I can’t really tell you when I realized that the ramifications of my accident would go on for longer than it took my bones to stitch themselves together again. At the beginning, I envisioned my broken lower body being like cement. If I just let it dry long enough, harden, glue itself together, it would be good enough to stand on without any problems.
 
That faulty assumption came crashing down when, during my extended hospital stay, I began physical therapy at an in-patient rehabilitation facility where every other patient was older than me by decades. During my first day of therapy, a physical therapist asked me if I could flex my left quad. I stared at that muscle, hard, willing it with everything I had to at least tremble. It stayed perfectly still.
 
That’s when I thought, “Oh, shit. I don’t remember how this is supposed to work.”  
 
And so began two years of learning how to use my body again. I wasn’t paralyzed in the spinal cord sense of the word, but the surgeries to fix my broken bones had cut through my many of my muscles and severed the nerves that once had done such a great job communicating my brain’s wishes. The three months I spent in a wheelchair didn’t do much to help my muscle memory either. I slowly moved from that wheelchair, to a cane, to walking, to walking without a noticeable limp.
 
I transitioned, bit by bit, from having a visible disability to being able to skate through most interactions with people assuming I was just as able-bodied as them. And I learned how to disguise the markers of my disability status: to walk carefully to make my limp less noticeable, to discreetly pick up my bad leg when I get out of cars or off of couches so no one realizes it’s difficult for me. I practiced until I could successfully pass through the able-bodied world with a minimal amount of detection.
 
Having my disability status become invisible seemed so simple. It meant that I didn’t have to deal with the two major social interactions of being visibly disabled: total eye contact avoidance or unabashed staring, asking prying questions or avoiding speaking to me at all.
 
When you are visibly disabled, people have a tendency to decide that you are weaker or inherently motivational and wise. With a hidden disability, no one put me in a box from the moment they saw me, making sweeping assumptions about my identity or physical capabilities. Instead, I got to determine what I revealed to them about myself, guarding the story of my disability status like a secret only to be shared with choice people slowly and over time. 
 
None of this means that being a person with a visible disability is inherently negative by any means. Being a part of the disability world has been powerful, enriching, and has led to some of my most significant life moments, and I will continue to shift along the spectrum of visible/invisible disability for the remainder of my life.
 
It’s just that it’s incredibly difficult to get used to having a visibly disabled body after having a couple decades of able-bodied privilege under your belt. Comparatively, a non-visible disability is just so damn easy in some crucial ways. Although there are times when if feels like you have to justify or prove your disability status, you still have control over how you present yourself and your story that are just not possible when people can see your disability status and make their own assumptions first.  With a non-visible disability, I can be gloriously invisible. It is nice.
 
But as I get further from my accident and more involved in the disability community, I have had to question whether or not I am doing a huge disservice to myself and disability visibility by keeping my disability status secret 90% of the time. Frequently, when people who know about my accident ask me if it hurts still, I deflect or spew platitudes and just say, “Oh, you know.” I don’t say that physical discomfort has been a near constant companion. Or that I miss being able to run and jump, that I don’t think I remember how to skip, that sometimes I trip because my left side lags behind, that I’ve been in physical therapy for two years and do a large amount of daily maintenance to keep my pain levels in check.
 
I don’t say that my accident has simultaneously been the very best and the very worst thing that has ever happened to me. I don’t describe bursting into tears in the parking lot of my boyfriend’s apartment complex because I couldn’t figure out how to get on a bicycle, even after two years of rehabilitation, and that no one told me it would be so hard. I don’t even attempt to describe the long, emotional process of letting go of my able-bodied past to celebrate and appreciate the new body I have now.
 
I choose not to tell the stories of discovering new physical activities I could do, or finally being able to walk to a place with my favorite view after countless hours of working up to it. Or that I choked up some when I got there, from a potent mix of happiness, sadness, gratitude to be there again, and thankfulness for being alive.
 
I keep these things to myself for mostly selfish reasons. I am intensely, intensely private –- y’all, writing this was hard -- and talking about my journey is like letting someone into the deepest confines of my spirit, which is a place I tend to reserve for my near and dear.
 
But then I think about how lonely I was when I was first grappling with my disability status. I didn’t know anyone who was young and could speak the same language of disability experience as me. I only began to find young members of the disability community after one dear friend vocally talked about her experiences with cancer and another was featured in a newspaper article. Is my desire for privacy worth denying someone else who finds themselves suddenly with a disability the opportunity to talk to me, to feel heard and recognized, when they are trying to wrap their minds around a sudden change?
 
I think about my graduate school classmates, the students I teach, and the everyday interactions I have. If they knew that I have a disability, would they be more likely to care about disability in general? Would they listen to me talk about how the “accessible” bathroom is not always wheelchair compatible and care, just a little bit more, about how frustrating that was when I was navigating a world that frequently was not made for me?
 
Would having a personal connection to disability issues -– and one of the most marginalized groups in the world -– help at least one person not be so freaked out by someone with a disability that they just avoid them completely? Does my discomfort with talking about my own story deserve to be swallowed if I help one person “get” disability just a little better? Am I obligated to reveal my disability status and can I really get upset at the lack of disability awareness as long as I am not actively speaking? 
 
I’ve started slowly disclosing my invisible disability, in small ways and then in slightly bigger ones. I wore a bathing suit that showed my scars and when someone asked me about them, I didn’t just change the subject. Instead, I told a little bit about my story, about how learning to use my legs again was so hard, but also so cool.
 
I did a presentation about interacting with people with disabilities to a group of college students and let myself be pleasantly surprised when they asked good, thoughtful questions. Every time I successfully treat my past and disability status for what it is -– a compelling, powerful part but not the entirety of my identity -– it seems a little less heavy and my faith in humankind is continually reinforced.
 
And I did submit this, which will hopefully help just a little bit more.