Mainstream culture has this tendency to think that everyone wants to be like them, and maybe to a certain degree, that’s true. They are “mainstream” for a reason, after all!
But I think that it is a mistake. I think that simply following mainstream, and making that norm, that average, into our actual goal is flat out wrong. Every one of us was created unique, literally unique, down to our fingerprints and retinas. We are all absolutely individual and glorious in that individuality.
We try and squash that, we lose the flavor that is the best of us.
Race is a part of that flavor, which is why ‘melting pots’ are such a bad idea. We don’t want to melt race out; we want to appreciate race for all the beauty it holds. We want stew that retain the flavors of the celery, the carrots, the bay leaves, the tarragon and the broth, not just a melted mass of same-ness.
Disability is also a part of that flavor.
Embracing the diverse ways that minds work, ears hear, eyes see, bodies move and exist and everything else that makes up the cross-disability experience is a part of making that stew flavorful.
Just as we don’t want to squash the exquisite expanse of flesh colors into a narrow swatch of whiteness; we also don’t want to squash the myriad expressions and perceptions of our minds, ears, eyes, and bodies.
“Passing” Is Not the Goal
“Passing” is the art of trying to squash oneself into the mainstream norm.
I know all about it, because I tried to pass for most of my life. I got really good at it, but getting good at it just about killed me.
In order to get good at passing, I needed to numb myself and squelch the parts of myself that, when allowed to emerge, are without question the very best parts of who I am. Those parts are far from mainstream. They engage the pieces of me that are present because of my disabilities, not despite my disabilities, and they are the exact pieces that I need to build disability pride.
Disability is An Intrinsic Part of Us
Saying we can or should “overcome” our disabilities, to me, denies the value that lies at the core of them.
To me, there is absolute value in being d/Deaf, in having Down syndrome, in Autism. There is value in the way we perceive and interpret the world, in the lenses through which we experience this place and time. The value doesn’t lie in my becoming more like someone else; the value lies in my being able to dig in and truly experience the totality of who I am, and how these disabilities influence, affect and shape my world.
They give me skill sets that others don’t have.
So when I deny the value of them, I am also denying the skill sets that they give me, because you don’t get the skill sets without the disability.If we deny the value of disability, we deny what they bring to us by way of skillsets, because we don't get the skill sets without the disability
The Fine Art of Diving In
I think that leaning in – or diving in! – to your disability is something of a fine art.
On one hand, we live in a culture that has created a mainstream that places the most value on the non-disabled way of life. The world as it is right now, was not made for us.
So we do need to sharpen the disability-related tools that are available to us to access, navigate and thrive in it, on the non-disabled terms. The disability-related tools being hearing-ware, occupational therapy, speech therapy, wheelchairs, wheelchairs that rise, service dogs and all other nuggets that give us more access in and to the world around us.
But I think the goal is not to get those tools as sharp as possible and to continue with the way things are right now. That’s just “passing.” That’s still squeezing ourselves into a non-disabled world.
I think the goal is dive in and really explore what our respective disabilities MEAN. That is, learn more about what they have to offer us, what we learn from them. What they lend to our particular experiences in our lives.
I’m talking about a very new subject, something that has not been done before. It’s kind of like needing to be our own wizards because there aren’t any schools of magic around (or a Professor X).
I think this is critical to transforming the disability experience from one of suppression and “passing” to one of thriving and fluorishing.
Disability empowerment, leaning in, all this disability pride stuff…. I’m no loud, proud advocate.
I struggle with internalized ableism all the time. I struggle with pushing back against a system that actively discriminates against my kids and myself.
But I know in my gut that my disabilities give me an edge that others don’t have.
Looking at back at what I’ve learned about my disabilities and how I learned that, I see some themes emerge:
I saw people that were like me, that had disabilities like I do, and those people were doing things that I wanted to do
I learned more about my own disabilities, and recognized that where I once just thought I was stupid (like, for example, not being able to hear or process information in class), I was actually doing pretty great (- like, not being able to hear or process information in class and I still did well in school)
Through getting fired and almost-fired for not being able to hear, I was forced to figure out how to present my lack of hearing as an asset. That process pushed me to articulate the value in deafness, to make a case for being deaf. I think process should be required; because making a case FOR our disabilities teaches us the value they bring
I learned about the ADA, IDEA and what my actual rights are (- like, for example, I didn’t need to sit in class without being able to hear or process information; accommodations are my right, my privilege, my opportunity)
I learned the history of my deaf clan, and while weeping at that history, see the commonalities in our experience, which weds my heart to the deaf community
I learned about the Disability Rights Movement, about who we are as an emerging culture.
I see in these pieces that I’ve learned in growing disability pride, how important it is to:
Mentor, connect from within the disability community (either same-disability or cross-disability)
Recognize our accomplishments
See our value
Understand our rights
Learn our history
Know our culture
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I see my role as a parent of kids with disabilities (- disabilities other than my own) to instill these components within them. I have my daughter connected with Down syndrome community, we speak regularly of her having Down syndrome, and what that means, what it doesn’t mean. We talk about it, and try to tease out the threads of disability-related skill sets.
We watch all movie content that is appropriate about it, and again, we flesh out the disability themes in the media we consume.
We celebrate disability “holidays” like the ADA Anniversary, 3/21 (World Down syndrome Day), Deaf Awareness week and so forth.
I strive to connect my kids to mentors who have their same disabilities, and to be connected to the larger cross-disability community.
Leaning Into Disability
I continue to learn, every step of the way. I’m learning from the greater cross-disability community, learning from the marvelous Gen Z, learning from the world around me. Learning from the quiet of my heart and intuition as well.
I think that learning is part of the point in this, too. “Disability” is not static, and everything within it is evolving and changing. WE, as a human species, are likewise evolving and changing.
Setting any of this in stone ( like getting rigid over “people first language”) defeats what perhaps lies at the core of this: disability is the last known frontier in the expanse of the human experience disability is the last known frontier in the expanse of the human experience.
We need to engage in this exploration of “disability” with open minds and hearts. Through that, we can uncover what a “disability” really is, and how to let it unfold, growing our disability pride, all the while knowing for sure that the goal is never to become more mainstream, more average.
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.