Inspiration porn further disables the disabled

In 2014, a disabled woman named Stella Young took the stage at TEDx in Sydney and introduced the audience to the concept of inspiration porn. She explained that disabled people are most commonly seen only in stories and images that pornographically “objectify one group of people for the benefit of another group of people.” She had been writing and speaking about this topic for a while, exploring the various ways that disabled people were used to make other folks think mostly of themselves. For example, inspiration porn sometimes shames the viewer by showing a disabled person overcoming basic obstacles, implying that anyone less disabled has no excuse. Another variant focuses on individuals helping people with disabilities, suggesting that others should help too, centering attention on the helper, not the recipient. In all cases, disabled humans get treated as props.  

Stella died December quite unexpectedly, but alas, inspiration porn still dominates depictions of disability in the news, so her work continues. In the last few weeks, three stories about disability have gone viral. A high school quarterback in Pennsylvania took a girl with Down syndrome to prom, fulfilling a promise he made to her when they were in the fourth grade. A Qdoba employee in Kentucky was filmed feeding a customer with physical disabilities. Madeline Stuart, an Australian woman with Down syndrome, lost weight and became a model.

Each of these stories has been reproduced on news outlets and shared on social media around the world in multiple languages. They all feature people doing good things. There’s nothing necessarily wrong with the content of these stories, of course, but the way they’re told conceals the real issues faced by the disability community. We need stories that illuminate instead.

The quarterback story is just a recent example of the kind of tale that goes viral during every prom and graduation season. Ben Moser and Mary Lapkowicz knew each other in elementary school. In fourth grade, he promised to take her to prom. Eight years later, despite not attending the same school as Mary, Ben made good on his promise.

The two look smashing in all the pictures; I’m sure they had a great time. The story, though, centers on Moser. He’s the hero. We learn nothing about Lapkowicz. Moreover, the articles use the word “friendship,” even though there’s no sense that the two have an ongoing reciprocally rewarding relationship. Has he seen her since the fourth grade? Do they hang out together? Does he pity her?

Friendship is a fraught issue. Maintaining inclusive and reciprocal social contacts can be a major challenge for people with disabilities. I worry about this for my son, who has Down syndrome, and I know that I’m not alone. In my parent groups, we frequently struggle with how to build friendship networks outside of other kids who share our children’s conditions. There are lots of nice people who want to help, but do they have real friends? I’d love to read a story about Lapkowicz and her social world or perhaps something on the significant challenges faced by people with intellectual disabilities as they transition out of high school and look for work or college.

Instead, all we get is the hero quarterback.

The events at Qdoba raise bigger questions. David Jones noticed a woman in a wheelchair stuck outside the restaurant’s door, so he helped her inside. Then he saw her being fed by an employee, Ridge Quarles. Jones whipped out his camera, recorded it and uploaded to YouTube; the video went viral. As first reported by a local station, Quarles, when interviewed, said that he didn’t know the customer’s name but that she was a regular. “Sadly,” he added, “she has to sit outside the restaurant until someone notices her or another customer that’s coming in has to let her into the building.” When she asked for help eating, he didn’t stop to think but slapped on a pair of gloves and assisted.

Like Moser, Quarles seems like a good guy. Journalists, though, can do more than declaring this story inspirational. Did Jones ask permission before objectifying this woman in his quest to praise Quarles? Do people with disabilities have the right to expect privacy?

In objectifying this woman, as writer and disability activist Emily Ladau points out in a piece for the Center for Disability Rights, the stories all ignore the woman’s personal agency. “The woman is not helpless. She specifically requested assistance with eating,” Ladau writes. “She advocated for what she needed. The employee’s assistance was simply a kind acknowledgment of her request. [The comments] regarding the man are all to the effect of “bless his heart,” “what a hero,” “such a saint.”

One reporter led his piece on the Qdoba story with, “Faith in humanity, restored.” Through the viral video, the woman becomes an object to be fed and a means by which to demonstrate that Quarles is a good guy.

Then there are the legal and policy questions. Why is Qdoba not accessible to disabled patrons in the first place? No one should have to wait outside a door to be let in. And shouldn’t Kentucky provide appropriate community-based supports for this individual so a disabled woman can lead a more independent life rather than rely on the kindness of strangers?

At least the attention on Stuart has focused on her and her choices. Her story of fashion and weight loss has led to a professional modeling gig, some wonderful photo shoots and reporting from around the globe. As her mother says, everyone ought to realize that “people with Down syndrome can be sexy and beautiful and should be celebrated.” Her fame has sprung from her Facebook page and is something she clearly wants. I’m ready to celebrate her.

Unfortunately, the coverage is using Stuart’s pursuit of her goal as a way to fat shame. Kerima Cevik, the author of the blog Intersected writes, “This was an amazing thing to accomplish, and it shows the kind of iron will I’ve seen again and again in the neurodivergent community. Beyond the usual ‘pull yourself up by your own bootstraps’ style inspiration porn generated by Maddy’s success, her before and after photographs are being used in the worst possible way to promote fat shaming of her peers, to impose the myth of indistinguishability and objectifying stereotypes that could actually harm her peers.”

The message should be that people with disabilities can set and achieve goals, not that thin equals beautiful.

At its core, inspiration porn demonstrates the need for a broader engagement with the social model of disability. People typically view disability through the medical model, in which diagnosed conditions present obstacles to be cured or overcome. But according the social model, while many people may have all kinds of medical conditions, people are disabled by the lack of accessibility in our society.

Reread these three stories through the lens of the social model. Moser and Lapkowicz are news because stigma makes it hard for people with disabilities to have close friends, especially with someone as iconic as a high school quarterback. The stigma disables.

Stuart is an exception to the social norms that view disabled bodies as unattractive, and she gets to be that exception only by conforming to specific body norms. The perception of disabled bodies as nonsexy is disabling, not the bodies themselves. The anonymous woman in Qdoba is disabled not by her wheelchair but by restaurants that lack automated doors and a society that doesn’t provide sufficient community-supported assistance.

Last week even TEDx Sydney’s attempt to honor Young’s memory backfired by once again objectifying disabled people. TEDx is encouraging individuals to go talk to disabled people and ask them questions, leading one critic to write, “There is no role for disabled people in this campaign, except as objects to be aware about. Any campaign about us must be built on bedrock of real actions and social change involving business, community and governments.” TEDx has since removed Young’s name from the project but has not really addressed the core concerns raised by many disability activists.

The disability community needs much more than kind restaurant employees, handsome quarterbacks and photo shoots. We need better policy, changing norms and real conversations about key issues. Inspiration porn makes us feel that everything is going to be OK. That’s possible only if we stop being distracted by pretty stories and have the tough conversations.