When I wake up, at first I don’t remember—still in the fog of some delicious dream. But when I stretch my arms, there is no equivalent stretching of legs or toes; rather, I must lift my paralyzed limbs with my hands, placing my heels firmly on the footplate of my wheelchair, reminded once again that I am disabled.
This is a reality I cannot escape as I roll into the kitchen, propelling myself in this wheeled contraption that permits me some semblance of a normal existence. There awaits my cat, a creature so nimble he is able to hop on top of the fridge in two successive leaps, while I merely watch. Sitting. Always sitting.
My God, I think, I can’t walk.
I am forced to realize this again and again, as though I were in a real-life version of Groundhog Day or that one episode of every science fiction show that ever existed—you know the one. And as the new day’s sun reveals the tragic truth of my tragic situation, my only (admittedly still tragic) consolation is what a big damn hero I am.
Annnnd…scene.
I’m having fun with you. The truth is, dear reader, my disability is probably much more dramatic to you than it is to me. Perhaps you were even sucked in by the first paragraph, believing that’s really how I wake up each morning.
And thus begins another day as a disabled person…le sigh.
For me, the entire thing is a farce. Spending nearly 25 years in a wheelchair has given the concept some time to grow on me. I wake up, not regretting the shocking reality of my disability so much as regretting the shocking reality that it’s already time to get up for work.
In graduate school, I wrote a humorous essay about the perks of being disabled (sweet parking, no wait for roller coasters, being carried up and down stairs by strapping young gentlemen—you get the idea). But when my classmates read this piece, many mentioned its powerful, underlying pain. Another peer even told me of a friend whose mother committed suicide, and how her friend tried to make jokes to cover up the pain of such a tragedy and although she was no therapist, mightn’t I be doing the same thing?
When I reflected on these comments, I realized I wasn’t the one typecasting disability as painful. As a writer, though, this simple fact of my person is one that comes with a lot of baggage. The words ‘disability’ or ‘wheelchair’ or ‘car accident’ seem necessarily to imply ‘tragedy’ to many readers. Certainly, there are moments of my life that have felt tragic—that I have openly characterized as such—but I’ve found tragedy to be fairly unsustainable for long periods of time. It is not the whole, ongoing, or even most important truth of my life.
Being paralyzed is also enlightening and hilarious and, for me, completely normal. And yet, too often, my normal days and my normal life are read as tragic days and as a tragic life because it’s too hard to fathom that a differently functioning body isn’t also an inherently worse body.
I’m still learning when and how to divulge my disability in writing. I know that such a revelation may color everything else I say, preoccupying my readers with what happened and when, wondering if I’ve recovered psychologically, wondering if they themselves would even be able to get out of bed in the morning if it happened to them. Or maybe just wondering whether or not my arms ever get tired. The simple truth is that disability has affected many aspects of my life, but often not in the ways you would think. And so I’m trying to learn how to communicate the different facets of disability that have nothing to do with tragedy. Or to show that sometimes, my wheelchair is merely a footnote to another story I’m trying to tell, as pertinent as my blue eyes or my long brown hair.
Oh, and for the record, until my consciousness is transplanted into a robot dragon’s body and I become Mecha-Ashley, my arms do get tired.
Tragically tired 😉
- Guest Post, Ashley Caveda: My Body Is Not A Metaphor - August 31, 2017
- Guest Post, Ashley Caveda: Me After Me Before You - June 2, 2016
- Guest Post, Ashley Caveda: Raising the Bar - April 16, 2016
Here here!!!
I think you have done quite well for yourself, Ashley. It would be interesting to read how you view paralysis as “hilarious.” In all my years, I have never been given that parallel. What I have found is that as I have aged, a disability becomes more accepted and less defining by my peers because they are also aging and learn their aches and pains do not defile their spirit! May your spirit carry you far.
Hi, Deb! Thanks so much for reading this post, and for your question! In my experience, disability can be REALLY funny. In fact, there’s almost nothing in this world that I don’t find funny sometimes, unless it truly is tragic–like the murder of a child or something equally unremittingly terrible. And I eschew the idea that disability is one of those things. In some ways, I think tragedy merely implies a huge life shift and becoming accustomed to it. Meaning, BECOMING disabled was a tragic event for me, but BEING disabled is not.
My favorite hilarious memory happened when I was a freshman in college. I was at a Second City show here in Indianapolis with my then-boyfriend. I transferred from my wheelchair into one of the seats, and my wheelchair was parked nearby with my coat and my boyfriend’s coat resting on it. At one point during the show, a man ran down the stairs into the audience and grabbed me by both hands and said, “Come on! We need your help onstage!” and proceeded to PULL me with him. I protested, “No no, I can’t!” and he said, “Don’t be shy! Of course you can!” and continued pulling. I started laughing, “No no no!” because I realized that this guy didn’t know I couldn’t walk and that he must have people protest being pulled onstage all the time. I needed to clarify. “I can’t, I said, “I’m in a wheelchair!” and then gestured to my nearby chair. The guy looked at my chair, then at me, then my chair, then me, and said, “Oh… you can’t WALK.” His mouth was literally hanging open. He recovered after a moment, and pulled my boyfriend onstage to dance like a cowboy and I could not stop laughing!!
Interestingly enough, this is the specific moment my graduate class found to be so tragic. It was the impetus for me writing this post actually. That I could find something so hilarious, and yet so many people around me would characterize it as tragic really bothered me. I didn’t like people implying (or in the case of the girl who compared it to suicide, actually directly saying) that I was just “making the best” of a terrible, horrible, tragic situation. And if people do find this moment to be tragic or sad, then as I say above, they are the ones typecasting disability as painful, not I.
Events can be tragic, but my life is not. My life is funny, and full, and sometimes hard, and sometimes boring, and most of the time, pretty darn good.
Thank you, Ashley, especially for this— “I’ve found tragedy to be fairly unsustainable for long periods of time. It is not the whole, ongoing, or even most important truth of my life.”
I really enjoyed reading this. Everyone has their own tradegies, but we always envision others as much worse than our own. Your piece help put that into more of a perspective for myself, thank you.
This was a very interesting read. The line I found especially powerful was this: “When I reflected on these comments, I realized I wasn’t the one typecasting disability as painful.”
We are so inclined to assume the way people feel, or the way people should feel, that we invent stigmas and stereotypes without realizing it. The writing workshop in this piece is an incredible way to convey how this occurs.
Loved this piece.
Thanks for your insight. I’ve always wondered if it just becomes normal to people that they are always in a wheelchair, or if they regret every day. I think that your thoughts have a lot of truth. You choose to make things humorous and uplifting. I think that is exactly how almost anything tragic can be. It is your mindset that results on how you feel towards something. You choose to find happiness, and I bet some others regret waking up every single day. It is all about perspective. Thanks so much for letting everyone know that we shouldn’t typecast everything as a tragedy.
You had me on the hook in your first paragraph! It is completely true how we treat other human beings who are different in any sort of way. Years ago I took this Special Education class lead by an amazing professor. He taught us that people who have disabilities often times want nothing more than to be treated as everyone else. This man who was blind would guest teach and tell hilarious stories regarding his disability. His attitude reminds me of yours. To me, your words relate a lighthearted take on life — wheelchair or not.