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Thursday, July 9, 2020

What I'm Thinking About This Disability Pride Month

During this Disability Pride Month, I have spent many quiet hours thinking about what disability pride means to me. I wish I had a perfectly neat, simple, eloquent answer, but I don’t… because I don’t think disability is a neat, simple experience.

I used to feel pressured to hide the painful parts of my disabled existence, for fear that the non-disabled world would only see those painful experiences and assume that being disabled was full-stop miserable. But I’ve learned to acknowledge those painful, messy parts of my living in this body, because they are real and we as a community do ourselves a great disservice when we push away our pain. 

So, here goes. I am 27 years old and my body hurts every single day without exception. Cerebral palsy is literally in my bones. I imagine there’s some wacky calculation, like dog years (OK, I’m kidding!) to figure out the true age of my hips, which seem like they moved to the retirement community for chronically achy joints long ago. I carry both the physical scars of multiple surgeries and the invisible scars ground into the deepest parts of me by ableism.

I can still see seventh grade me, the little girl in the red wheelchair who hid in the elevator before school rather than get stepped around, stepped over, or awkwardly placed at the only accessible lunch table that was otherwise used for detention.

I can see the nurse’s aide, who when asked to help me to an inaccessible hospital bathroom replied that “this floor is for people who walk.”

I can see my middle school self, refusing to drink anything in the hopes that I could get home without peeing. My refusal was mostly about avoiding an abusive caregiver, but also about the fact that finding an accessible bathroom that fit a real powerchair, not an imaginary stick wheelchair, was basically impossible.

I can see that high school girl who felt invisible when she wasn’t invited to hang out with a non-disabled schoolmate after sixth grade until college.

And with me always is the reality of our collective disabled grief. Too many of my disabled friends, comrades, and community members have died, and while they leave behind incredible legacies, the brutal hurt of losing them from medical complications, from disease progression, or from the failure of care systems never ever fades. 

Nor does the hurt of wrestling with the strange contradiction that sometimes the same disability that bonded us, that helped create a wildly beautiful human being also snatched that person from me too soon.

All I know is that when non-disabled society marks their deaths by imagining them springing up from their wheelchairs and walking in the afterlife, I want to scream that they were perfect as they were. 

There’s the constant fear that the long-term care system will fail me, that the patchwork “system” society has cobbled together to support us will no longer be enough and I will be taken from my community to an institution where I cannot make my own choices. 

There’s the guilt in knowing that the above scenario is already the truth for too many people just like me.

So, where’s the pride in this? Being disabled sounds pretty hard. Well, it is. But we don’t talk enough about joy. The joy that’s specific to being disabled, the joy I wouldn’t know had I been given another reality. 

To my disability, here are some of the things I love about you.

I love the community you gave me, the way I can spot a fellow wheelchair user and connect us in seconds, usually with fewer than six degrees of separation. My mom and I have a tongue-in-cheek (but only kind of!) routine where we see another wheelie in which we say, “OK, do we know them? Camp, PT, or doctor’s office…we must!” It’s a stereotype that we all know each other, but the secret’s out, we kind of do!

I love the way you’ve taught me to embrace interdependence. You helped me realize early on that independence is the biggest lie ever told. We all need each other in some way and when the rest of the world can understand that, we will heal some of society’s most broken parts.

I love the way you’ve taught me to call bullshit when a well-meaning person declares that they “don’t see me as disabled.” Because anyone who doesn’t see me as disabled flat out doesn’t see me. 

I love that you’ve given me the privilege of laughing with “crip siblings” who lovingly accept my CP squeals and occasional accidental kicks when I’m very excited…the same people who make my tighter hand fly around wildly when I have a burst of emotion.

I love the way you’ve helped me to know God. No, not in the corny “disabled children are special angels of Jesus just for existing” way. The God you’ve revealed to me is a hodge- podge God, too big to fit neatly into a strict set of religious rules. A loving God who already calls this disabled body glorified. A God who builds ramps to Heaven.

I hope that when people think of me they will call to mind my disabled joy and not just my struggles.

I accepted long ago that some people will always think less of me because I am disabled.

 But I do not have to think less of myself. 

I am human and I do not love myself perfectly in every moment of the day. But still, the love is there, thriving inside of me in a society determined to make me hate myself. 

That is what I’m proud of today, this month, and every day I am alive That the joy of being disabled exists in me, alongside and wrapped together with the painful parts of living in a body deemed disposable.

That joy is mine and no one can have it.

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