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.
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 :)
ReplyDeleteThank you! Inspiration porn has always really confused me until I read this.
ReplyDeleteYes.
ReplyDeleteIt's a power I don't always see though I definitely feel.
Eliza: we do all inspire each other.
Anonymous: for me the porn part was always fairly straightforward, especially when Stella Young talked about it. Before then I didn't necessarily have words for this experience or the ones which were thrust upon me.
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.
ReplyDeleteYES....Because it's a battle, isn't it? It's a battle to love oneself and not measure self against easily measurable markers of Independence. Because I do find inspiration in my peers/neighbors with disabilities, and not in a patronising way.
ReplyDeleteExactly. 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.
ReplyDelete