Things Our Culture Doesn’t Tell Us About Disability
Growing up, our culture tells us a whole lot about the world in which we live.
The message of our culture is that disability is a burden, it’s a weakness, it’s something we need to overcome and fix. If we have a disability, the message that we receive from people around us – not all people, but enough of them – is that we need to fix ourselves in order to be good enough.
I want you to let that sink in a little bit.
Those of us with disabilities spend our formative years with people around us (not all people, but enough) nudging us to fix ourselves to “overcome” an intrinsic part of who we are.
We are asked to change the unchangeable.
We are asked to change things that we can’t, by people we have a connection with. That means that us deaf try to hear or asked to learn to lipread, talk; holes are drilled into our skulls for hear ware. Kids with Down syndrome go through years of various training – sometimes with a sincere desire to help facilitate their way in the world and sometimes with a sincere desire to try and make them more like people without Down syndrome.
That means that we are often told that we need to be like something we are not, we need to be different than who we ARE.
Added to that, we have popular culture without us reflected in it, we don’t see people with our disability in any position of power, we don’t see ourselves anywhere except in some “feel-good” flash of a story about someone helping us or something.
This seeps in and makes its way around our hearts and our heads: we aren’t good enough. We are a burden. We are useless. We are stupid. We can’t make it, do it, we’re broken. Ugly. Worthless.
I ask you:
What happens when a kid spends their formative years absorbing messages like that?
Do you know?
I’ll tell you: we don’t think we have value.
When we are hurt – emotionally, physically or sexually – we think we deserve it somehow, we rationalize it and don’t report it or seek help. When opportunities shine their way to us, sometimes we don’t grab them because we don’t think we are worth it (who would hire me, want me?!). We often find ourselves in relationships that harm us, but we think that it’s somehow okay because…. we really don’t value ourselves.
Of course I should probably go back and re-write all of what I just wrote and replace everything with an “I” statement: “I” thought I deserved being hurt, “I” didn’t grab opportunities because “I” didn’t think I was worth it, “I” found myself in abusive relationships. I, I, I. I don’t want to go back and change my statements though because I’ve realized that I’m like most people with a disability, we disabled have so much in common.
Regardless of our disability, we really do have so much in common, because we grow up in the same culture that has the pervasive messages of our broken-ness. We absorb the same messages. Someone else might not walk, another person might not see, but it really doesn’t matter; we’re all getting the same messages sent to us by a mainstream culture that sees us as fundamentally broken.
Our culture does not tell us that we are worth much
The problem is that when you don’t think you are worth much, you don’t protect yourself, you don’t fight for your rights, you don’t see your value. You don’t realize that you have power.
You don’t understand how NOT alone you are, or rather, how MANY of us there really are.
In our many-ness, we have power, and by reaching out, seeking each other, holding on, sharing our experiences, understanding precisely what our culture is and is not telling us all about disability allows us to form a different message.
The message that our culture could be telling us about disability:
- Disability is a natural part of the human experience
- Almost everyone on earth has a connection with disability
- “Disability” is an inaccurate word, but it’s the only one that we can agree on for now, so just say the word, and say it UNDERSTANDING that it does not reflect on capacity or ability!
- There are advantages to every way of being, INCLUDING disability
On a hippie-bend, our culture culture could be saying things like:
- We are all children of the universe, “no less than the trees and the stars, you have a right to be here.”
- We are flowers of one garden: a garden is most beautiful with a lovely array of intricate blossoms
- There is beauty in all diversity
- Collective consciousness is real: if we value the power of all, we GAIN the power of all
- Whatever you believe, so it is.
- Kumbaya, baby! (nah, not really, but just checking if you were still reading)
We, You, Us, Me: We are the First Step
Culture will shape up nowhere, nohow real fast without us sculpting it.
We have to be the first to believe in ourselves and in our worth. It might feel like it’s asking for the impossible, but we have to stand by ourselves, each other. We need to believe in our power, reach inside and heal those wounds, move forward.
Because this is the thing: we are worth it, we were always worth it, whether or not our culture told us we were.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.