It’s 2004, and I’m locked in my room. I’m trying to stifle the sound of me crying. Everyone is at home. They’re all back. I dragged myself back up the staircase as soon as I heard the garage door move. I miss the space. I miss the extra room for my anger and sadness. This type of pain is private. I don’t get the opportunity to flail it around for the world to see. I don’t want anyone suckling at it for their own comparative joy. I’ve heard all of those types of compliments before “If I had your disability, I wouldn’t leave the house,” or “looking at you, I feel so blessed.” Because I’m disabled, I’ve become accustomed to the ways in which people talk about disabled people and disabilities. It’s like they’re speaking out of both sides of their mouth. It can be freeing to claim a word people don’t understand—even hate to describe yourself. It feels like a rebellion within a word. Disabled.
I’ve spent so much time in my childhood mourning something I never was: abled. So many people compared me to a version of myself that I never existed that it felt like I had lost her, or that I was letting everyone down for not being her. I was born with my disability. Cerebral Palsy has been in my medical charts since I was two years old. The dream that I will never walk perfectly never started with me. It was a combination of well-meaning family members and complete strangers telling me that their own abled bodies were the standard of ability—and that if I didn’t want that for myself, I was “giving up.”
When I found the word disabled, everything made sense to me for the first time. I was grounded in place on feet that had never before felt steady. I was so used to apologizing for my existence—making myself small so that the appearance of my crutches were never too abrasive or distracting. It wasn’t until I was in my early twenties, no one had even asked me what I preferred to use to get around. It had always been assumed all mobility aids were a hierarchy and I was to work my way upwards—otherwise, my other dreams for myself would never happen.
If I had “a disabled mindset,” I wouldn’t make through college (I graduated in 2013). If I “acted disabled,” I wouldn’t get to travel (I graduated from the American University of Paris in 2018). If I “kept talking about disability,” no one would ever want to hire me (it’s why I got my job).
Everything good in my life, everything I have worked for came through not denying the word “disabled” but embracing it. It doesn’t make any of it easier, but it has set me free. I’m free. My greatest burden associated with my disability wasn’t the diagnosis, but the shame others imposed on me because of it. That shame wasn’t mine to hold. That’s why it fought me, bruised me, hurt me and caused me to hurt myself.
I can’t imagine going back to a life in which that is my reality—making my disability less with euphemisms that make others more comfortable, or brushing it off with words like “I don’t see you like that.” How I define myself isn’t about anyone’s comfort but my own.
So, #WhenICallMyselfDisabled, I don’t care what your opinion is (especially if you’re not disabled). I can’t afford to. Not anymore.
I won’t hold your hand through your discomfort. I will not bend my words to fit your mind. I will not conjure words that don’t exist. I will not pray over my body to make you smile. Just say the word. When I call myself disabled, it isn’t up for debate. It isn’t a conversation starter. It’s not a launching point for a greater conversation.
It is not only with word that explains my body, but it also describes the ramps you refuse to build. It calls out the wages you refuse to pay. It shows the world the inclusion you are slow to produce. I think your discomfort with the word disabled doesn’t merely describe me, but you too.
Because every time I make you say it, it holds a mirror to your inaction, and you’re scared to look yourself in the eye.
Thanks for writing this. It has been enlightening for me to learn about different ways in which people even within the disability community think about the term disabled. (One good friend prefers the term special needs, some bloggers prefer embracing the label disabled, and others prefer a different label altogether.)
Thank you for this.
I used to be a part time cane user, when I read the phrase ” It had always been assumed all mobility aids were a hierarchy and I was to work my way upwards”, something clicked in my mind.
Thanks.
This is profound, enlightening and shed clear light on a subject that is unknown and exclusive only to the disabled, I have a brother who is blind, from a accident, and there are some days that in the middle of my busy life his phone calls are not only distracting but irritating, he’s a giant of a person, and I don’t have a clue what he’s facing alone in the dark, and I am afraid to ask.
As always, an insightful article that causes me to stop and go “holy crap” as a light bulb goes off in my head. In my case, disability came with injuries and surgical complications. I remember the pain of using the grocery store mobile carts, feeling like a failure and knowing that shoppers were thinking “well, she is just using this because she is fat”. It took me too long to say “WTF if I am? Mind tour own damn business”. I also remember getting my own scooter and the wonderful feeling of cruising the park, pain-free, on a sunny day. It took me far too long to claim myself as disabled and unapologetic. I am not here to meet your expectations. I will use whatever I need to survive.