A few years ago, I learned that June is Scoliosis Awareness Month. I learned this only because one of my friends told me that they had seen it on Instagram.
“You have your own month!” they said, excitedly.
But the truth is, I wasn’t as excited as they thought I would be - or, to be honest, as much as I thought I should be.
For one thing, June is already firmly established as Pride Month. And while I don’t identify as queer, I have so many loved ones who do, and I feel like that month is already reserved for them. I don’t need to take up space with my spine thing - it’s not life-threatening, nor have people with scoliosis been denied basic human rights, like marrying who they want, or using a public bathroom without people questioning their identity.
Also, while I actually do have scoliosis, I don’t identify as much with “having scoliosis” as I do with “having a fused spine.” In fact, sometimes when I meet people who tell me they have scoliosis too (“but like, really mild - 15 degrees or something”) I feel grumpy. “That’s not at all like what I have,” I want to say.
Then, there’s the other piece:
One month of “awareness” is not enough.
One month of celebrating the queer community is not enough.
One month of remembering African-American history is not enough.
One month of honoring Asian American heritage is not enough.
One month of Autism Acceptance is not enough.
One month of Fat Acceptance is not enough.
And one month of Scoliosis Awareness is not enough, either.
I want to live in a world where everyone is loved and listened to and celebrated, no matter what month it is.
I want a world where everyone receives quality health care, regardless of their skin color, gender, orientation, body size, spinal condition, intellectual ability, economic situation, mental health…
I want a world where we can see each other’s identity groups and how those identities have shaped them, and see beyond the identity label and be present with them, as individuals.
So here is what I am trying to remember, this Scoliosis Awareness Month:
Awareness is the first step. Some people are already painfully aware, and have been aware for years - but for others, this is where they are. This step cannot be skipped.
There is great power in groups. Groups can provide physical and emotional safety, and can more quickly bring about change than individuals working in isolation. Plus, groups remind us that we are connected and loved, and that caring for each other is essential.
Each group is made up of individuals, each with their own, unique experiences. Even within “a common experience,” there is immense diversity.
To all my scoli-siblings out there, no matter the size of your curves or the number of vertebrae fused: my heart is with you. I don’t know your experience, but I know how scary it can be to feel like your body is completely out of your control, and you don’t know what the future holds. It’s awful.
To all my fused friends: I know how frustrating it can be to feel rigid all the time, to be uncomfortable when everyone else seems to be fine, and to not be able to do the things you used to do. It sucks.
And to all my human friends out there: My heart is with you, too. May we all remember that we share so much, and that we are also so different. Let’s keep celebrating each other, being present with each other, taking and giving the space that we need to thrive.
Pictured above: Baby Abby and her spine, c. 2000, just 2 years before receiving spinal fusion surgery.