The Spirit Catches You and You Fall Down is the story of a fiercely frustrating cultural clash, the crux of which lies the differing perceptions of one particular disability: epilepsy.
In the story, a Hmong refugee child living with her family in Central California has epilepsy, complete with grand mal seizures. Epilepsy, viewed within the Hmong culture, is a blessing, a gift from the gods, in which the spirit of the gods catches within the mortal soul and makes one fall. Seizures then are seen as a gift, a deeply spiritual experience. Because of their view of epilepsy and seizures, the Hmong family in The Spirit Catches You and You Fall Down does not want to “cure” their daughter; but the American system in which they live – the American social, health and protection workers do.
This story has been tickling the edges of my mind for a while in that ‘what was it?’ kind of tantalizing, trying-to-put-my-finger-on-it way. Like picking a sliver of eggshell out of a bowl of eggs, the tiny piece slipping under my finger just as I get a little closer.
And then, I got it. I captured the sliver of eggshell, I connected what it was about the Hmong story that I wanted to examine: the cultural value of disability.
The Cultural Value of Disability
We’ve had storms raging regarding disability. From prenatal testing to the economics of disability, case after case is made on the value of a life that is different. I don’t think that anything will fundamentally change so long as our culture continues to regard disability as nothing but a lodestone, occasionally paraded out as “inspiration.”
We do not, as a society, look at individuals with disabilities as unique people with unique gifts. Not “unique” in that condescending “special” but rather “unique” the way that each flower is unique, each star, blade of grass, hummingbird – unique as each and every human being is unique. No more, no less, and all worthy of delight in their respective ways.
As a society, we do not seek out what an individual with Down syndrome or ___________ (fill in the blank with any given disability) is going to offer us; we try and force that person into the society box of culture.
We say, fix that, that and that and you’ll be good for this, this and that. We assess, we measure, we say, “fine, you are at this level and so you are fit for x, y, z. Go make some coffee at Starbucks because you can handle repetition and have a skill-set suited to simple tasks.”
We don’t say: you dance like a wild mad woman and your joy brings joy so let us use as a healer. Let us respect that you have this energy and power and can bring real good and positive change to the depressed, the unhappy, the people that need your light.
We don’t say, you are Deaf, you see, observe and note: let us respect that you have the power to communicate without words, let us use your power and you will be our ambassador in situations in which we need to observe, see, and note.
We don’t say, you are highly sensitive, your body is like the canary in the mine. Let us respect and honor your sensitivity and learn what needs changing in our environment. Something is wrong, is off, and you can help us understand what that is.
We don’t say, you are depressed – and so many of us are depressed! What is happening within our collective whole – the framework in which we build this thing called “culture” upon? We were not born with this kind of sorrow; something about the way we are choosing to live is affecting us negatively. Let’s find it. Change it. Live in different ways that do not cause us to become sad.
We don’t look at the contribution of disability in and of itself, you see.
We are not looking at disability and seeing it as opportunity for growth, change, forward movement and advancement of our human race as a whole. We are looking at it like it’s a problem.
We’re looking at disability like it’s something to be fixed.
We’re looking at disability like it’s a conglomeration of broken bits of human flesh that need mending, aren’t right, work wrong, defunct.
We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.
Those of us with a child with a disability know that our children bring with them gifts, just as all children do. Many of us, having grown up in the midst of ableism, want the world to know this new truth that we’ve discovered, that ableism was all a lie and the presuppositions swathing the disability were all wrong.
We say, “hey! HEY! Look at my kid, look at our lives! It is good and it’s sweet – I was wrong, so wrong about everything I thought I knew about disability” And the outside world scoffs and thinks we are somehow trying to validate the fact that we have a child who is different, “she’s making the best of a bad situation,” they say.
And we want them to know, “no, no, REALLY! I am telling you the solid gold truth!”
We are telling the truth. Yet the jumping up and down and the clamoring, while doing more good than nothing would, will never be truly effective unless and until our collective cultural value of disability shifts.
While thinking of the cultural value of disability, my thoughts turn to Star Trek. You know, Star Trek has always provided scientists with the inspiration to do more, try harder.
Those scientists saw what was a fantasy program on TV, at a time in which computers were as big as a room. Engineers were inspired by Star Trek to try and create cell phones, smaller computers, visual phones, doors that opened automatically, i-pads!
Scientists didn’t see Star Trek as an intergalactic floating bucket of impossible dreams.
They saw it as opportunity.
This is what I crave for us with disabilities: that disability be recognized as an opportunity for growth. That it be valued and respected for contributing in valid ways to our society, in and of itself as the diverse thinking and experience that all people inherently bring contribute to a vastly richer human race.
Opinion PiecesPosts that I've written about disability access, inclusion or things said
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.