I recently watched a video of two able-bodied people talking about the word disability. They thought it was degrading and humiliating. They decided, if their bodies ever malfunctioned, that they would prefer differently-abled because it didn’t sound as weak, and they wouldn’t feel so alone. If someone called them disabled? That would be too awful for words.
You may have noticed that I often express myself with varying tonal sighs. Dramatic. Exasperated. Tired. In this case, as a person with a disability, I feel a combo platter bubbling up my throat. Frustrated, weary, and a dash of, “Are you serious?”
Before I go on, I think it’s worth pointing out that their intent wasn’t hurtful. At no point did I get the feeling that they were trying to be rude, derogatory, or willfully ignorant. I assume their ignorance was innocent, and they sincerely want to do or say the right thing.
Despite their intentions, however, I felt irked and downright peeved. They were aiming for inclusion, but their words just highlighted how different they think I am. To them, I belong to the Other, and they need to minimize my existence for their comfort. Their words disparaged my body, my life, and who I am as a person.
I experienced a rush of emotions, and all of them were quite negative. Anger. Frustration. Annoyance. I wanted to yell at the screen and type out a lengthy retort in the comment section. Excuse me? What are you saying? I…Words…Can’t…Find…Words.
Even now, typing these words, I’m struggling to articulate my feelings because I can’t quite grab my thoughts or hold them down. They’re too bouncy and slippy. Why is this bothering me so much?
Normally, I don’t need to be correctly labelled, and your labels don’t bother me. You can call me whatever you like because how you see me is a reflection of you. It’s got very little to do with me or who I really am. It shows your biases, preconceived ideas, and cultural learnings. Is it good or bad? It can go either way, but that’s your business, not mine.
I have my own biases, we all do, and I’m not above snap judgements or incorrectly labelling people. I’m trying to become more aware of my biases, and I’ve received a lot of help from kind people. For which I am eternally grateful!
I don’t want my narrow world view to cause someone harm; that’s not okay. It’s never right or justifiable. I’m sure I could come up with a few excuses, but they don’t hold up, and they shouldn’t. If I believe that every life is precious, and I do, then I need to treat you with respect, compassion, and empathy.
There’s that saying, you don’t know what you don’t know until you know it. After that, we have to choose what we do with that knowledge. Change, grow, and become wiser. Or carry on and hope for the best. That’s quite the choice, eh?
The choice becomes harder when we start talking about personal identifiers. It’s a sticky topic that makes eyes twitch and fists clench. How I, as a singular being, identify my body, story, or any other aspect of my life, becomes an open forum discussion. Everyone thinks they have an opinion and that their opinion should be taken seriously. More than that, if the community can’t agree, then my choice, my identity, is nullified.
And I’m just trying to figure out if I like being called disabled or if I’d prefer something else! Trying to figure out other aspects of identity? I can’t imagine how hard that must be for you. Also, why should I get a say in how you see yourself? Who you are, and how you want to be addressed? It’s arrogant to assume that, as a society, our norms have to be enforced for our comfort while excluding the comfort, dignity, and humanity of someone else.
Maybe that’s why this conversation bothered me so much. My body has taken a beating, it’s broken, and it’s covered in scars. Because of that, my body doesn’t represent the classical idea of beauty or perfection. It has never, will never, fit the generally accepted societal norms.
Which means, just like that, I am a part of the Other, and that makes my identity complex, messy. Up for debate?
I was diagnosed with chronic renal failure when I was three, and I have acquired a few secondary conditions along the way. One was renal osteodystrophy, a type of bone disease. It causes brittle bones and some deformities, but I was lucky. It cleared up quickly, and it didn’t wreak as much havoc as it could’ve. It did, however, leave behind damaged joints, chronic pain, and some mobility issues.
I walk with a limp that varies in severity. Sometimes, it’s mild discomfort, and I can make it less obvious. I don’t always need a mobility aid, but it comes in handy when I have to navigate the abled-bodied world. If you have an invisible disability, people are less understanding. When you walk slower, they are far quicker to anger or express their frustrations. Having a walking stick is a helpful visual aid, and it usually takes the edge out of people’s voices.
But again, it makes me apart of the Other.
There are a lot of reasons to hate having a disability, and I could write a thousand words on that alone. It’s painful, and there’s always something that’s twinging or acting up. Good days are defined by how few things went pear-shaped and how many obstacles I successfully climbed. Bad days often mean that the pain was too much to endure, and I barely got out of bed. Still, getting out of bed on a bad day means I won at least one battle so, that bad day was a decent day after all.
This isn’t a woe is me, look how hard I have it, pity me post. I abhor pity, and I don’t have any use for it. Even on my worst day, I don’t want you to look down on me or feel sorry for me. Instead, let’s sit together, have a cup of tea, and talk like the equals we are. Isn’t that more fun than wallowing in pity? Self-induced or otherwise.
For all of the bad, there’s one thing having a disability gives me that abled-bodies undervalue. My disability makes me different, unique, and it gives me character. It adds colour, texture, and flavour. I don’t always like how it feels, looks, or tastes, but I’m not a cookie-cutter gingerbread person.
I’m handcrafted, artisan, and one of a kind. There’s no one like me. No one has my scars, and no one’s body looks like a road map like mine does. No one else has my story or the voice to tell it. In a world that wants us to fit into boxes that can be neatly wrapped and placed under the Christmas tree? I’m that odd-shaped, pointy, curvy edged present that no one knows what to do with.
You can’t wrap me up and hide me away. I stick out! Put a bow on my head and sing tada, because I will never fit into that box under the tree. I’m the big reveal. That one gift that takes the breath away. I’m the one you won’t forget because being different, my friend, is powerful. It’s beautiful. It’s a full, well-rounded, story that’s never been told before.
I think there’s something incredibly special about living in the Other. But let’s flip the coin and look at the he downside.
I’m a reminder of how fragile the human body is and how our mortality is assured. When you look at me, you see the physical manifestation of the things we’re all genetically programmed to fear. Things like weakness, fragility, and death. It’s an innate, inherited, and reenforced emotion that’s very hard to overcome.
In my experience, when people have this mindset, there will be one of two responses. There’s the repulsed stare and silent retreat. They stand far away, looking at me with wide eyes as if their brain can’t process what they’re seeing. I catch them staring, wave, and they shake their head. Are they telling me to look away or, are they trying to ward off bad luck? Perhaps, they’re trying to assure themselves that I didn’t see them staring?
I saw you staring. I always see you staring. You’re not subtle, and yeah, there you go. Right on cue, turning away from me so you can forget that life is messy and complicated. Good luck with that. I wish you well.
The other response comes out of nowhere, and it always catches me off-guard. There’s a smile that’s too wide, and its almost hungry. They’re quick to speak, but they rarely say hello. They completely disregard all the typical conversation starters and dive right in as if compelled to speak by a mighty force. The words come out in a rush as they let me know that I’m still beautiful despite my limp and scars.
Uh…Thanks? I didn’t think I wasn’t beautiful, but now that you’re pointing it out, I feel a little self-conscious.
Without me asking for their thoughts, opinions, or if I need a motivational poster, they use phrases like, “This doesn’t define you.” Or, “I don’t see physical differences.”
How do you not see it? I just walked up the stairs with the grace of a drunk penguin. I almost fell four times. I cursed twice. There’s no way you didn’t see that.
Fear and uncertainty make us behave in strange ways, but most people want to be kind, and they’re trying to connect. It misses the mark because they still see the downside of the Other. They see the weakness, frailty, and the abstract concept of mortality displayed in 4D. That’s frightening, it’s uncomfortable, but if they smile wide enough, or stare hard enough, then maybe I won’t notice.
I notice, and I’ve gotten quite used to it. Take a breath. It will be okay.
If you can’t see the unique, layered, and textured beauty of the person in front of you, then you start viewing their identifiers as negatives. Disability becomes a bad word because it’s linked to so many adverse concepts like: Weakness, vulnerability, pain, and death.
But, changing the word doesn’t eliminate those things any more than closing your eyes makes me disappear. I’m still here, and my body, my story, isn’t going anywhere either. What I represent for you won’t change because you dress it up. It will always be that thing you fear, and the word itself won’t lose any of its power.
Instead of changing the word, let’s broaden our limited definition. There is beauty in pain, growth in suffering, and life holds death’s hand. The bad parts of life will always exist, but the good can outshine the bad because light shines brighter in the darkness. If you focus on the light then the rest isn’t as scary.
There’s nothing wrong with the word, only how we say it. So, instead of saying it with fear, use it was pride. To me, the word disability is a badge of honour because we are survivors. We fight battles that few can imagine, and at the end of every day, after every breath, we claim victory. We survive the unimaginable every damn day. We are strong. We are brave. We are fighters.
We aren’t defined by our bodies or a single word. We are complex people, just like you. We’re trying to live full, happy, love-filled lives, just like you. We have fears, just like you. We have hopes, just like you. We are people, just like you.
The only thing that’s different is one, simple identifier and how you choose to use it.