‘Inspiring’ can be a loaded word among the disability community

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by Halsey Blocher |

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Every disabled person, including those with SMA, has likely received the well-intentioned compliment of being told they’re inspirational, but it’s not a label that everyone is comfortable wearing. This fact leads me to wonder why. Who should we take inspiration from, and how should we communicate it?

We all naturally seek inspiration in both the mundane and extraordinary parts of life. It motivates us, drives our creativity, and pushes us to be better people. It’s something that often strikes us without warning. We only get to decide how we’ll respond to it — or to being the source of it.

Not everyone wants to be inspirational

Hopefully, we all choose to try to channel our inspired emotions into something positive, but when the source of our inspiration is a person, they may not always enjoy the attention.

In the HuffPost article “Please Stop Calling My Life With a Disability ‘Inspiring,’” author Venessa Parekh recounts the shame she felt during a school award ceremony where students with the highest exam scores were recognized for their achievements. Vanessa was among those receiving certificates, but unlike her peers, Vanessa’s was for “inspiring performance” instead of academic excellence.

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Vanessa goes on to write, “But being hailed as inspiring, especially when it’s in the context of little everyday activities, feels insulting in a different way. It surreptitiously makes me doubt my achievements because I don’t know whether I’m really a good writer or student or singer (as people tell me I am), or whether I’m being complimented simply because it’s a convenient way to approach my disability.”

While her award was well intended, it left Vanessa feeling singled out for her disability. And although the situation may have bolstered and inspired those around her, Vanessa’s perspective is valid and worthy of being respected.

What’s inspiration porn and how do we avoid it?

Berkeley Disability Lab defines inspiration porn as “the portrayal of people with disabilities as inspiring solely on the basis of their disability.” Such portrayals often come in the form of viral memes, videos, and news stories that depict disabled individuals having ordinary experiences or being rightfully included in their communities.

It’s not wrong to want to celebrate people with disabilities. Everyone deserves to be celebrated sometimes. But it’s helpful to know how to differentiate between desirable attention and inspiration porn.

One way to do this is to assess whether the disabled person was involved in the creation or sharing of the content. If someone posts disability-centered content about their lives for public consumption, that’s great to praise and share. If photos, videos, or stories of disabled people are circulated without their consent (or that of someone with authority to speak on their behalf), that’s an invasion of privacy.

Expanding our perspective and vocabulary

If you’re ever unsure about calling a disabled stranger inspiring, I’d suggest considering whether you’d say it to an able-bodied person in the same situation. We’re allowed to be inspired by random people we encounter in public, but is that how the conversation would start if the person wasn’t disabled?

Getting out to participate in ordinary activities does tend to be more challenging for the disabled population, and I appreciate those who recognize this. But we must also remember that not every adversity is visible and everyone needs kindness. Perhaps we should extend kind words to more people, regardless of their abilities, with the hope of brightening their day.

As we practice paying more compliments, let’s also make an effort to broaden our vocabulary and personalize our words. The Forbes article “Is There a Healthy Place For ‘Inspirational’ In Disability Culture?” suggests that the word inspirational is so controversial in the disability community partly because it’s overused. One recommendation it offers is seeking adjectives specific to that person, which would likely come across as thoughtful and genuine.

We all have the capacity to be inspirational

It’s important to be respectful of anyone who prefers not to be seen as inspiring, but there are still many, such as myself, within the disability community and beyond who strive to inspire others in our everyday lives. We hope that our words and actions, big or small, will in some way better the lives of those around us.

In the SMA News Today article “Researchers Share Story of Patient Who Inspired Them,” members of a medical team describe being inspired by their teenage SMA patient. This young woman’s life goal is to inspire others, along with pursuing a creative career. Her care team describes it as an honor to benefit from the lessons they’ve learned from her positive attitude toward her challenging life.

Maybe an inspirational act doesn’t have to be extraordinary or newsworthy to be meaningful. And maybe people with SMA and other disabilities aren’t the only ones who can be inspirational in everyday life. If we really look for it, I believe that inspiration can be found everywhere, and we all — regardless of abilities or circumstances — have the capacity to inspire someone.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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