Imagine a photo of a child in a wheelchair with a basketball, someone running on carbon fiber prosthetic legs or a person with RA deformities knitting. Across the bottom of the photo is emblazoned this text: “your excuse is invalid.” Inspiration porn, stigma and the way out

That’s inspiration porn.

Porn involves the objectification of one group of people for the benefit of another group. Using people with a disability or chronic illness who’re somehow managing to go about their lives as inspiration for nondisabled people to feel better about their lives or motivation to get off their arse meets the definition.

I’ve ranted before about this, sometimes when a stranger, who knows nothing of me except that I use a wheelchair, has earnestly told me that I’m brave. Sometimes, it’s been in response to a story in the news about a person with a disability doing something “exceptional.” And when I do, it is because the conversation I had with that someone or the story was tinged with condescension and amazement that I — or the other disabled person — was not only up, dressed and capable of introducing ourselves, but also out there. Doing things.

Inspiration porn is grounded in the utter amazement that a person with a disability or chronic illness creates a life. It is grounded in the lack of imagination which convinces healthy, able-bodied people that they wouldn’t be able to do that. That they might even kill themselves if they lost the use of their legs or received a serious diagnosis.

It is grounded in stigma.

Stigma is a negative label attached to a person or group of people based on a particular characteristic, such as disability or chronic illness. For those of us who claim membership to one of those groups, the stigma particularly relates to the expectation that this is all there is to us. We become stereotyped as those “less fortunate,” people who “suffer” through their existence. People who, if they are living lives similar to their able-bodied peers, have achieved something amazing, something inspiring. We’re not. We are, in the words of the brilliant StellaYoung in her wonderful TED talk, just using our bodies to the best of their capacity. Like you do.

That’s not to say that it’s verboten to find a person or their accomplishments inspiring. It absolutely is. When you know them or their story well enough to see the actual accomplishment. Like Stella Young says, her life as a teenager going to school, working in her mother’s hairdressing salon and being obsessed with Buffy and Dawson’s Creek is not an achievement. On the other hand, being on stage at that TED event and giving a beautiful speech that creates change is. Not because of she did it with a disability, but because of her message. That’s the difference right there. One is based in a deeper understanding, the other in the stereotype.

So what do you do to fight it?

Inspiration porn is not created by the people living with disability or chronic illness themselves. It’s created by those who don’t know what it’s like. And that’s how we began to push back. By being the authors of the message ourselves. By telling our stories, sharing our accomplishments and explaining why we’re proud of whatever it is we’ve accomplished.

This is where HealthCentral enters the picture. As you know, I was the subject of the RA edition of the Live Bold Live Now documentaries. It’s something I was proud to be part of, because the focus was on me telling my story, not someone else doing a voiceover with that “isn’t she amazing” tone in their voice. At the end of the two days of filming, I thanked the crew. Not just for their patience in dealing with a novice, but for telling my story in a way that was very much not inspiration porn.

HealthCentral is using those documentaries as a jumping off point for their Live Bold anti-stigma photo contest. We encourage everyone with a chronic illness to share a photo of an accomplishment and tell us why they’re proud of themselves in 250 words. Enter on the #LiveBold contest page on HealthCentral’s website or use the form below. Then share your entry and news of the contest with everyone you know using the hashtag #LiveBold. This has the potential to do something exciting and special. I hope you submit your story.

How do you #LiveBold?

1 Ready to walk

Lene’s entry in the #LiveBold contest is about her team doing a 5K in the Walk to Fight Arthritis