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Monday, September 4, 2017

Disabled Folks, You Inspire Me. Yes, You Read That Right.

As disabled folks, we learn early on that the business of inspiration is tricky. "Inspiration porn" permeates our culture, that is, the media that calls us “inspirational” and “courageous” just for being in the world. Society wants to call the local news channel when people without disabilities befriend us. Inspiration porn is damaging in multiple ways. It perpetuates a set of low expectations for disabled people and makes the manner in which we exist the hurdle to clear, rather than the countless ways society is designed to exclude us. Marking us as “brave overcomers” of our own bodies is an easy way to hide the fact that there would be much less to overcome if places and spaces were built to welcome us—in terms of both physical architecture and the attitudinal architecture of inclusive love.

But I think in the effort to avoid the understandable grossness of the patronizing, “get your Kleenex for the poor crippled people” style of inspiration, we disabled folks have lost the vocabulary to talk about the “good kind of inspiration”—that is… recognizing and celebrating the ways that we motivate each other, build each other up, and push each other forward. The ways we inspire each other—not in the “you get a blue ribbon for drinking chocolate milk” way, but rather in the way that makes us say, “I see power in you.” So, in that spirit, I’m going to take inspiration back… and say something that tastes strange in my mouth: my disabled brothers and sisters, you inspire me.

I draw enormous strength from the guidance you give me. The camaraderie I witness among us, from tips about the best type of wheelchair tires to serious discussions about long- term care, is necessary and life-giving. From my fellow disabled folks, I have learned just how much the human body can adapt. From friends who write with their toes to friends who use their crutches to fish shoes from under the bed, the people in the disabled community have revealed not weakness, but a sense of innovation… and an enormous capacity to persist and resist in a culture that depending on the time and place has called us “useless eaters,” “benefit scroungers,” and  “drains on society.” To be disabled is to be brave, but not the kind of brave that writes tearjerker TV episodes or warms people’s hearts on the morning news. I’m talking about subtle courage. Quiet courage. The kind it takes to be proud in a culture that calls you broken. The kind that would make those morning newscasters feel a little uncomfortable. That kind of courage doesn’t happen overnight. As the late activist Laura Hershey wisely told us, “you get proud by practicing.”

 Being with other disabled folks, who teach me to bend instead of break under the weight of bureaucratic paperwork, gawking strangers, and the perpetual threat of service cuts, makes “practicing” an almost holy act.  When I look around at those, who like me, are navigating the world in a disabled body, I see people who are almost poetic in their mastery of survival. When wheelchair lifts break and buses don’t show up, and personal assistants with whom we have trusted our most basic human needs fail us, we endure. We fight back. Sometimes, fighting back means chaining yourself to a fence to protest policies that try to put our brothers and sisters in nursing homes. Sometimes, fighting back is as simple as refusing to apologize for the space you take up, the help that you need, or the slower pace at which you move. It’s learning not to say sorry for your own bodily functions, because yes, you need to go to the bathroom again.

It’s confusing to me when people imply that my disability is not a part of me. In a literal sense, the pulse of overzealous electricity that bounces between my brain and my muscles has carved out a crooked house for my spirit. It’s hard to imagine anything other than a shoulder that tips to the left and a hip that juts to the right, a body unsure which way to be pulled. It’s hard to imagine a life without long, spindly fingers and a thumb that tucks stubbornly between two fingers when I concentrate very hard. Beyond what is physical, my disability colors my thoughts, my humor, and my dreams. It is impossible to extricate it from the soul inside that crooked house. And if it were possible to do so, I’m not so sure that’s what I would want.To my fellow disabled folks, with differences both visible and invisible, with muscles and bones and minds and spirits that dare to “be” in a world unkind to them, how could I regret this life when it gave me you? 

Inspiration has evolved to be a dirty word in our circles. So has courage. But you inspire me in the best way and you give me that quiet courage I talked about before—the courage to love myself fiercely when the world doesn’t always love me back. To know that even on days when it feels that way, my worth isn’t determined by my ability to tie a shoe, or walk a step, or take a shower on my own. My friends, my “family”, my “brothers and sisters by circumstance,” thank you for all of these things. 

I see power in you.

4 comments:

  1. Thank you for this Kathleen. I believe that we're all disabled in one way or another, but my son's disabilities are more debilitating than most, and his ability to keep on keeping on and enjoying life when it's enjoyable and yelling his head off when it's not, his ability to be his energetic, powerful self in the face of institutional stupidity and run of the mill timidity, really has inspired me. The things that he has inspired me to do, have in turn made people say that I inspire them. This used to make me uncomfortable. but not so much anymore, because the more I think about it, the more I believe that we all inspire each other. We depend on each other to keep moving and fighting and reaching out and not falling into self pity and moroseness and blah blah blah--all that. I for one admit to being inspired by the disability community, and proud to a part of it, and I really like your post :)

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  2. Thank you! Inspiration porn has always really confused me until I read this.

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  3. THIS is why disabled people should be called inspirational. Not for simply daring to leave the house like some people seem to find inspirational. Well done for highlighting how the word inspirational SHOULD be used in relation to disabled people.

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  4. Exactly. I've gotten to the point where I am comfortable with people calling me inspirational if they are my friends because then the reason for the inspiration is actually my accomplishments or character traits rather than some superficial compliment based on a first impression.

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