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Saturday, February 16, 2019

Disability Is Hard: On Giving Ourselves Permission to Name Our Pain

I’m going to throw it out there—something that almost feels impermissible as it rolls off my tongue, clacks on my keyboard…

disability is hard.

There, I said it. 

That is not an invitation for others to assume that my life is worthless, to assume that “disabled” is a bad word, or to assume that I think I need to be “fixed.” I have said many times over that I am proud to be disabled and I’m not lying. My disabled identity has infused perspective in my life that shores up my being as much as my bones. The people and experiences given to me because of my disability are sacred. But in the ongoing battle to have the non-disabled world recognize our value, and to recognize that so many of our obstacles are man-made, we disabled folks often deny ourselves (and others) the right to communicate our struggles. 

Yes, even the most disability positive people are allowed to have moments and days when having a disability…well…doesn’t feel awesome. 

By the time you have reached this sentence, some of you will have branded me with one of those dreaded adjectives: ableist, self-loathing, bitter. Maybe you will even call me the reason why so many non-disabled people see us as pity objects and not as whole people. But I am a whole person and that is why I am writing my whole truth. 

I am at peace with my body. Its remarkable ability to adapt, to find its own way of doing things often leaves me in awe. I don’t want to hide my surgical scars. I am fond of the way my left hand fingers fan slightly off to the side.  My strange circuitry, the overzealous puppeteer of my muscles, is beautiful in its own way. But it is OK too, to lament that my joints ache far more than they should at age 26. 

I am allowed to wish that my hip would just cooperate, to wonder what the jaunty movements of my non-disabled peers might feel like. To believe firmly in the disability rights movement and the fight for accessibility and also, to long some mornings, for the ease of popping nonchalantly into an inconspicuous non-adapted car. And oh, would it be grand sometimes to take an easy shower that felt like a quick task and not an event. 

Of course I have moments of envy towards people who can dress and shave and wipe their butts without the gaze of 4234652 gloved attendants. I often want to scream at those people… what does real privacy feel like?

 Is it carefree as it seems to pass by a nursing home in your 20s and not feel like it’s just a lucky break that you don’t live there? 

What is it like for your bones to have a youth?

I am every bit the person I was meant to be and every bit grateful for that. But it shouldn’t feel forbidden to have “bad disability days” or to wring my hands occasionally and say, “This just sucks.” 

Because disability is good and bad, easy and hard, ugly and beautiful…so much like life itself. And we owe each other, as disabled folks, the space and grace to say so without judgment. Similarly, our non-disabled peers owe us the chance to acknowledge moments of pain without dismissing our lives as wholly terrible.

I love my disabled self. But it is not a perfect love. It’s a love that needs work. That’s big and real and brave, but also cracked and wounded. That feels shameful to say, but one day it won’t.

I am learning.