“Don’t let your disability define you.”
I’ve lived almost 20 years as a disabled woman. Though I didn’t take my first steps until the age of 5, I’ve had no choice but to grow up in a hyper condensed amount of time. I’ve been forever bonded to the multitudes disabled life contains — the beautiful and the ugly. I’m not shocked by others’ bizarre behavior at this point. But I can’t wrap my head around the fact that people expect me to transcend my disability…I’m not even sure what that would look like. The closest thing I can think of would be my soul leaving my body, and that requires one of three things: drugs, dying, or being at a Taylor Swift concert every waking hour of my life. Choose your fighter! (To note: I choose the never-ending T Swift concert).
So, with those scenarios being completely unrealistic, I’m screwed in the transcendence department. Luckily, I have another unsolicited suggestion, to forget my disability, let it run its course, and just flip everyone off who can’t handle my presence. This ideology is one I’ve developed several hypotheses for and have tested out many times (the flipping people off part symbolically, though, I don’t have the fine motor skills or the guts to give the bird on a whim). Guess what? It doesn’t work, not even close. And when I tell people that this transcendental excursion and forced positivity fails, their faces turn inquisitive and frustrated, they begin to spew things like:
“You’re hyper-focusing on your disability,”
*after I ask for assistance* “you underestimate your capability, push harder.”
“Don’t wallow in your disability, that’s victimhood.”
“You should be more like this disabled person,” *shows me social media post* “they are just so positive and inspirational despite their circumstances. That mindset would be good for you.”
For the record, it’s only been in recent years I’ve started to let go of the unrealistic expectation to be an ultra-positive disabled person. I only really discuss the negatives if I open up to someone. But otherwise, I’m still constantly trying to embody this expectation because it feels like the only way to be taken seriously.
“Just don’t let it define you.”
“Don’t let your disability win!”
“People are probably being nice, you’re just overthinking.”
“You weren’t bold enough.”
In many cases, the people who tell me their revolutionary ideas are the same people who can’t shut up about my disability. They bring it up in every conversation, ask invasive questions, erase my pain and heartache as well as my joys and successes, treat me as inhuman, and then expect me to stop hyper-focusing on my “issues.” Am I really the one fixating on my disability here? I don’t think so. I was just asking if you pour your cereal or milk first, and now we’re halfway through my extensive medical history.
It’s taken a long time for me to realize this pattern because it becomes internalized. I become angry at myself for existing. No stomach bug can nauseate me the way this feeling does; this feeling of inadequacy and inhumanity just because I’m disabled. Just because my body is different. Just because sometimes I have plastic and metal on my feet, neck, and back. Just because I struggle walking and look different. Is this feeling that leaves me so frozen worth it?
Why do these suggestions, comments, and statements cut so deep?
Even if it’s done without malintent, telling someone they “hyper-focus” on their marginalized identity and/or that they should “just be grateful”, “push harder” or “just stay positive” is, in my opinion, the equivalent of spilling gasoline onto the already roaring fire of painful division blazing throughout the world. Well-intended people saying or implying these things will never get it, but they don’t have to, empathy doesn’t require experience. I feel bad to admit that it’s growing hard for me to find grace for these people anymore, so I keep quiet and make myself smaller.
To these people, I must kindly ask, If you “don’t see disability”, why do you whisper it like a dirty secret before introducing me to others or referring to me when I’m not there? Why do you have to look past my disability as if it’s a boulder blocking a stunning view? Is it scary? A turn-off? Does it make me inhuman? My disability doesn’t make up the entirety of my being, but it’s a huge component of who I am, and I need people to see it. Erasing it would be inauthentic.
My little sister pushing me (age 13) in my wheelchair post my double reconstructive foot surgery. (Photo by author)
I can’t stop thinking about my disability if the world can’t.
It’s not necessarily my decision, but most days I wake up and chase certain inner chaos in order to survive. I get so angry and distraught with how I’m treated that I attempt ghosting my disability, living my life without showing any “weakness”, letting things flow without making a scene, not caring what others think, and taking the suggestions I typically resent. That sounds like a good idea, right? Allow me to illustrate what the chaos looks like in motion:
A day in denial.
I wake up. Cool. I decide I can’t take living like this anymore. It’s too early for thought so haunting. I come to the realization that I can either a) disappear under my duvet for the rest of time, or b) get up regardless and turn my anger into strength. Trick question: I don’t get that choice, so it’s option B.
Electrical currents of pain course throughout my entire body. Wait, I can’t acknowledge that, it’s related to the thing I’m avoiding. Get up. The toothpaste tube and the weakness in my hands go to battle. Let the day begin. My body feels like it’s going to give out. I pretend not to notice. People are staring, but it’s probably in my head. Just be you. My pain has me on the verge of tears during class. I widen my smile until my face is contorted into an odd smirk. “Atta girl,” the voices of those who have shrunk my ring in my ears. Focus.
Post 10:40 am class, I’m hungry. I make my way to the cafeteria. Look at me, queen of independence, disability who? I pull out my phone to use Apple Pay but I can’t double click the button, I’m fumbling. Apple just forgot to make this accessible, it’s okay! I’ll accommodate! I have to pay cash. Breathe. The cashier audibly whispers to her co-worker “she’s struggling” as a decent-sized line forms behind me. I don’t have the heart nor do I have the range of motion to look back. I struggle with the wadded $20 from Christmas in the pocket of my elastic jeans (I can’t button regular ones). I give her the cash. She makes a point to further emphasize my struggle. Should I curse her out? I can’t pick up the change. I leave some coins sitting on the counter. I drop dollar bills. I struggle to assemble a paper bag and throw the cash right in next to my food. Gross, but I have no choice. Eyes bore into me, but maybe not? Maybe I’m delusional. Probably.. . . . . . . . . . . . . . . . . . . . . . . . .
Anyways, I did it! I force positive affirmations through my head like the Shakespeare sonnets we had to memorize for high school poetry class – something about darling buds of May? I’m unstoppable. Tears are not welling in my eyes as I walk back to the location of my next class. My pain level is off the scale, making this seemingly mundane experience some semblance of a nightmare. Just get through it. The day goes on. I fall hard on the tile because someone forgot to dry the floor. Concerned faces haunt my peripheral. It’s cool! Everyone falls, maybe it’s quirky! Despite my fear, I start small talk with classmates to combat this all-consuming isolation. I’m met with half-hearted sighs and sometimes talked to as if I’m a toddler.
I’ve got to be an awful person – their behavior is most likely unrelated to the fact that I’m so confusingly configurated and that they all just saw me eat shit, right? I can’t play the victim and blame my disability. But I know the truth like the back of my hand, I’ve lived it. It is my disability, making me mystically invisible and hyper-visible simultaneously. This is all too much. I’m done pretending. How am I supposed to transcend my disability in a world that repeatedly obsesses over it and tells me (silently and blaringly) that my existence is either a burden or an after-thought?
“Band-aids don’t fix bullet holes”
I must admit it, dear reader, after letting all of that out, I’m scared. I fear that people will think I’m trying to write myself into some “woe-is-me” plotline. I’m not. My life isn’t a sad story, it’s complex, and that’s beautiful. Reducing myself to a black and white tragedy would erase the entire argument of this essay, erase my life’s purpose, and simply serve as untrue. I am not a sob story or a being whose only purpose is to remind people that they “have it good”. I’m a writer, artist, sister, daughter, friend, student, stranger, listener, and human. I’m writing this because it’s about time we disabled folks can embrace ourselves as humans, but you have to meet us halfway. Deciding not to care what others think of you is a luxury we don’t have. I chose to give this example of an average day in my life to illustrate that I depend on what others think or in most cases, don’t think. If buying food is inaccessible, I forego my lunch. If I can’t open a water bottle, I’ll just have to wait until there’s something I can drink. If there’s no elevator, I take on steep stairs despite the danger. If someone refuses me a basic job opportunity because of my disability, I don’t have money.
I’m not, in any way, trying to paint disabled life as tragic, but the way society treats us is. We are not at fault. I wrote this essay in an attempt to make sense of all the backward logic that has been thrust upon me. This is our reality, we live in a world that isn’t built for us, and we are reminded of it in all we do. Just because we’ve grown used to it doesn’t mean it isn’t soul-crushing.
If you have an open wound, you can’t just ignore it, be positive, leave it untreated, let it bleed, and expect it to heal. You must acknowledge the wound, cover it in salve, problem solve, and adapt in order to truly heal and finally wear that scar with pride.
This is the same thing as allowing disabled people to acknowledge the pain of living in an ableist society instead of telling them to just keep going or be more positive. We must be relentless in the pursuit to make the world equal for all, lives depend on it.
I can’t help but wonder what the world would look like for us if instead of being encouraged to look and move past our disabilities, we were encouraged to embrace them. I believe that’s where the healing begins.
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