On Being Your Inspiration

Every Paralympic year, we see a surge in disability interest media. A few years back, Guiness made a commercial that featured wheelchair basketball. For maybe the first time, a national audience was exposed to the sport, and also to the concept that friends can support and include each other regardless of disability. In July, Channel 4 in the UK produced a handful of promos for the Paralympics—one is called We’re The Superhumans. The video features a diverse sample of people with disabilities performing feats of athleticism that could leave some of the most committed able bodied athletes feeling inadequate, and peppers in shots of them doing everyday things like eating breakfast and playing with their children. And the musicians. Oh, the musicians. If you haven’t watched it, just do that now.

Videos like those and the surrounding language and cultural attitudes evoke a variety of reactions from people with disabilities. In the last few years, the issue of inspiration porn, as we refer to it, has gone from something folks with disabilities roll our eyes at and complain about in our close circles to something that we rail against in the public forum, thanks to the late comedian and journalist, Stella Young, who introduced the issue to global audiences with her 2014 TEDx Talk, I’m Not Your Inspiration. Stella wasn’t referring to posters of naked people on Mount Everest overlaid with the motivational quotes like:

T E A M W O R K

Together, anything is possible.

She was talking about the objectification of a group of people—often disabled disabled—for someone else’s instant gratification. Its most basic elements are that it allows the viewer to compare his or her life to the subject’s and feel good, isn’t thoughtful or motivational in any meaningful way, and treats the subject as if its sole purpose is to provide a little instant gratification for someone else. When someone tells me that I’m an inspiration for “getting out and about,” or “contributing to society,” what they’re really doing is congratulating me for accomplishing something they think is difficult someone like for me. That comes from a place of misunderstanding about what it means to be disabled. News flash: Most of us get out of bed in the morning, though our methods may differ.

At the start of the Paralympics, The Guardian posted an opinion video on the public’s tendency to paint all Paralympic athletes with the inspiration brush, which criticized Superhumans for insinuating that people with disabilities are something other than normal. I struggle with this, and I know a lot of my disabled friends do too. On the one hand, it’s hard on your self esteem to be regularly patronized and told that your life is so undesirable that it’s acceptable to set the bar for blazing success at “put on pants; go outside.” On the other hand, life with a disability is challenging. We face physical and social barriers to everything from grocery shopping to buying a house to getting a job.

Here’s where the breakdown occurs: Inspiration porn frames my disability as a problem that I have to overcome, whereas I know that the day to day obstacles are mostly external and man-made (with certain exceptions, like chronic pain and other debilitating health issues). Contrary to what most people assume, my migraines are far more disabling than my spinal cord injury, but that’s rarely, if ever, what prompts a “compliment”. While the inspiration porn enthusiast says, “I feel bad that you don’t fit into my idea of normal, but watching you ‘cope’ and seeing you succeed in some small way makes me feel good,” I say, “I live in a world that’s exclusionary and has no problem leaving people behind, so I’ll have to work really hard to have the life I want.” Our frameworks for understanding life with a disability are at odds; we’re speaking different languages.

When we’re tempted to call something inspirational, it’s important to check ourselves and make sure we’re not projecting assumptions onto the subject. An easy, relatable example of this is the plethora of viral videos featuring a person with a disability getting asked to the prom. Prom’s exciting and all, and if a high schooler has their hopes up to go, it’s perfectly appropriate to be happy to see their joy at being asked. But the reason those videos go viral isn’t so simple; most people find them touching based on the fictional narrative that people with disabilities yearn and pine for a date to the prom, knowing in their hearts that it’s unlikely they’ll ever get to go. For weeks during the spring of their senior years of high school, they watch all the other kids buy dresses, rent tuxes, and plan dinners and limo rides, and their eyes glisten with tears as they silently wish that someone would find them a worthy date, even if just for that one occasion. Then, the cheerleader or quarterback makes the selfless decision to take them, and their parents, the school principal, the mayor, and the local news cry tears of joy as they watch this outcast receive their first—and probably only—boutonnière or corsage. Nobody really dates disabled people, but it makes us feel good to see their happiness at one night of “being normal.”

Let’s go a step further and ask why that’s the assumption in the first place. People with disabilities have a long history of being seen as charity cases when it comes to romance and socializing, which was largely propagated by our status as circus freaks beginning in the 17th century. Words like grotesque and unfortunate were commonly used in promotional materials, and the imagery those words bring to mind is still heavily associated with disabled people. Human, but not in the same way as everyone else, so one would have to either be desperate for companionship or a very good person to get involved. It’s expressed in many ways, and I have several personal examples: The random guy at the diner who told my friend, Melanie, that she was a good friend for taking care of me; the woman at the Apple Store who, upon finding out I was married, said, “Good for you for finding someone to love you”; the other woman at the Apple Store who refused to have me as her teacher because, “…those people make me uncomfortable”; the countless strangers who, in passing, have said something to the effect of, “You’re too pretty to be disabled!”; the college roommate who, bless her heart, admitted that, though she’d never really known anyone with a disability and was a little anxious about rooming with me before we met, she’d been relieved to hear I was a wheelchair user because she figured she wouldn’t have to compete with me for boys (don’t worry—we laugh about it now); and the multitudes of friends, family members, and strangers who have praised my husband for what a good person he is to have taken on a relationship with a wheelchair user. The list goes on, and on, and on, and on.

But inspiration isn’t always porn, is it? Some disability advocates disagree with me on this, but I don’t think it is. I’m inspired by the people I see in We’re The Superhumans, even if I think there might have been a better title than that. They trained to be the best in the world at their sports, through pressure sores, heat stroke (lookin’ at you, quad brothers and sisters), inaccessible practice and competition venues, inflated costs of entry to even get into their sports, and more. I’m also inspired by people who have the guts to follow their dreams and live unconventionally, and I’m inspired by parents who stay home with their kids and manage to cook a decent meal, shower, and get outside for some fresh air all in the same day. I’d argue that if something falls into the inspiration porn category, it’s not really inspiration at all—it’s just a comparison of one person’s life against another’s, and that’s what we should be railing against.

I haven’t always seen it this way. I heard an interview on NPR with Masha Gessen, a journalist from Russia who’s Jewish and also a lesbian. She talked at length about how changes in her environment and her understanding of them have caused her relationship with her Jewish and lesbian identities to evolve over the years. She now understands that those relationships will probably continue to evolve for the rest of her life, and she’s ok with that.

My relationship with my identity as a disabled person has also changed and evolved significantly over the course of my life. I could write another whole essay on the various phases I’ve experienced, from my naive view of, “I love my disability because God made me this way! Plus, I never have to wait in line for rides at amusement parks! #yolo #worthit,” to a sense of righteous entitlement to be treated as though my disability didn’t exist. Any insinuation that I might have been any different from an able bodied person was insulting. If you’d called me inspirational, you’d better have been wearing a helmet. But at this moment, it’s as though that pendulum has swung hard one direction, then to the other, and is gently swaying in a more flexible rhythm, much closer to the center.

Through developments in some of my own relationships, I’m coming to understand how deep our need for each other runs. People need each other in order to thrive, and sometimes even just to survive. We need to be able to relate to each others’ stories, struggles, and triumphs in order to open our eyes to what kind of magic is possible for ourselves. Know what the word for that is?

Inspiration.

Unfortunately, inspiration porn is an easy way to label things we don’t understand, and it hurts people with disabilities. As a community, we’re guarding against it by refusing to acknowledge that sometimes our stories— taken for what they are and not for what they can be compared to—have the potential to spur others on toward the best versions of themselves. But that’s something we should strive for.

We often respond to ”compliments” with snark and defensiveness, which stops conversations short of any communication about why we feel insulted or what our real, more meaningful stories are. The best case result is a missed chance to educate and another person going on without understanding the problem—or maybe not even knowing there is one—and the worst case is that one party walks away angry and frustrated and the other walks away embarrassed and hurt.

I don’t think anyone really wants the divide that this dysfunctional and ill-informed exchange creates. I’d even go as far as to say that the disability community hurts itself. We miss so many opportunities to share our challenges and teach others about the obstacles we face!

What’s the answer, then? How do we overcome these fallacies rooted in centuries-old attitudes?

We all have to check ourselves and be aware of our prejudices. A non-disabled person can ask questions when it’s appropriate, rather than jumping to conclusions about another’s inabilities. And as a disabled woman, I have to guard against my own tendency to make assumptions about other peoples’ biases when I’m feeling defensive so that I can redirect conversations that start off on the wrong foot. We can do a lot better than to simply meet in the middle, but I think that’s where we’ll have to start.

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