This is a discussion essay on disability pride, models of disability, sparkle sauce and glitter juice.
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Why Do We Need to Feel Disability Pride?
Why do we need to feel disability pride at all? Doesn’t that feel slightly masochistic, feeling pride in something that has given us grief in our life? Feel pride over something that essentially “isn’t working” from a mainstream cultural perspective. As a friend said on Facebook, “isn’t it enough that I accept it? Why do I need to feel pride over it?”
“Isn’t it enough that I accept it? Why do I need to feel pride over it?”
Brene Brown wrote in Atlas of The Heart that pride is a feeling of pleasure or celebration related to our accomplishments or efforts. This is authentic pride, it’s positive and can be felt for ourselves and/or others. “I can feel proud of myself, proud of you, proud of us.”
Pride is an emotional response or attitude to something with an intimate connection to oneself, due to its perceived value. Oxford defines it as “the quality of having an excessively high opinion of oneself or one’s own importance.” Wikipedia
Hubris, on the other hand, is “an inflated sense of one’s own innate abilities that is tied more to the need for dominance than to actual accomplishments.” It’s the negative piece that usually flavors the word, “pride,” and is not actually part of pride at all.
To me, there are two things going on with using “pride” in connection with disability: there is the definition of pride itself and the negative taste it can leave in our mouths. And there is the confusion over feeling like we must feel pride over something that may have simply been something difficult for us in our lives.
The Feelings Associated with Disability
The feelings that we tend to feel growing up with disabilities are shame (feeling flawed, unworthy of love, belonging, connection), guilt (feelings of what we’ve done or failed to do, putting others out, been an inconvenience), humiliation (feeling belittled and put down), and embarrassment (feeling that we’ve done something that has made us uncomfortable, but is a fleeting and relatable experience).
These feelings plug in to the medical model of disability (that disability needs to be fixed), and they make perfect sense when viewed through that lens.
We feel guilt our families have to go out of their ways to accommodate us, guilt that everyone in our class must wait, bored, while the teacher tries to figure out how to enable the closed captions in our Zoom session. We feel shame in who we are when we see ourselves through the lens of the medical model, that we need to be fixed, made “well”, that our edges of our square pegs need to be shaved off to fit in the round holes of the world.
The Social Model of Disability
The social model of disability, however, sees disability as a natural and normal part of the human experience. From the social model of disability, it’s the culture that we live in that’s the problem, and culture can be changed. Culture is a living expression, it’s fluid, it can transform. Shaving off our square pegs to fit in the round holes of the world, a’la Medical Model of Disability, is a travesty from the viewpoint of the Social Model of Disability, as it removes all juju, the mojo, the good sauce that disability brings with it. It’s like a giant vacuum cleaner hose, sucking up the glitter that also makes up disability.
And make no mistake about it: there IS glitter in disability. There’s sparkle-sauce and awesomeness in the world of disability. Whether or not mainstream culture recognizes it, almost everything that is deeply cool in the world came from someone with a disability. Think about it: we’re the ones who push outside the round pegs of the world – we push past the given consciousness. We literally go to new places in the way we think, emote, express, hear, see, move. Even Donna Summer had a disability!
Back to the question my friend asked:
Isn’t it enough that I accept my disability? Why do I need to feel pride over it?
Simply accepting our disability is living with the discomfort of being a square peg that’s rubbing into a round-pegged world. It’s fine. It works. It’s tolerable. But pride in our disability is finding our square edges, understanding what those square edges are to us, and celebrating them. Those square edges have sparkle-capacity and the very real capacity to change ourselves, change our world. We are never who are truly meant to be without them: they literally give us our edge.
That’s why I think choosing to feel pride makes sense.
- Brene Brown, Atlas of the Heart, pg 242-243; 134-165
- Hubristic pride and authentic pride (Authentic and Hubristic Pride: Differential Relations to Aspects of Goal Regulation, Affect, and Self-Control): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137237/
- Wikipedia, Pride: https://en.wikipedia.org/wiki/Pride
Watch the Podcast Video of “Why Do We Need to Feel Pride in Our Disability” here:
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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.