Don’t Turn My Son’s Lady Gaga Dancing Into Your Inspiration Porn

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When a video of my son dancing to Lady Gaga’s halftime show went viral, it got caught up in mass media’s love of disability-related inspiration porn.

M y son’s interest in the football game lasted only as long as he had fresh snacks. Once the pretzels, blueberries, Craisins, and offbrand Fig Newton-style cookies that he prefers were completed, he wandered downstairs to play in his room. But as the Falcons cruised to their seemingly insurmountable lead (Ha!), and the halftime show began, I went to tell him there was music. He ran, feet thudding on the wooden staircase, to announce his presence to his mother and sister in the TV room.

As Lady Gaga dove down toward the crowd (pre-recorded earlier, it turns out), my boy was two feet in front of the TV and ready to dance.

Lady Gaga’s anthem, “Born This Way,” projects a message of radical inclusivity. The lyrics argue that our differences are inherent in who we are, and that this diversity is fundamentally good. Celebrate identities, the song proclaims; “We’re on the right track baby.” It was her third song of the set, and Nico was boogying. I grabbed my phone, hit record, then tweeted the clip with six words: “He was born his way too.” My own little mini-viral phenomenon was launched.

My son, as I’ve written about often, has Down syndrome. Having an unmediated video clip (rather than an essay) go viral was new, fun, unexpected — and concerning.

Media coverage of disability is often informed by some of our worst ideas about difference. Coverage of disability tends to be pornographic — not in the sense of sexual titillation (mostly), but focused on evoking feelings in the consumer, rather than authentically displaying the lived experience of the subject. In the disability rights community, we tend to critique such representations as “inspiration porn,” a phrase popularized by the late activist Stella Young.

Media coverage of disability is often informed by some of our worst ideas about difference.

There are at least three basic types of inspiration porn. In one, a disabled person does something normal — like dance to Lady Gaga — and the viewer feels inspired because the disabled person can do this normal thing. Look at them overcome their disability! the narrative goes. This framework cheapens real accomplishments and rarely considers the socially-constructed obstacles to broad success for people with disabilities.

In the second type, an abled person does some basic act of kindness — such as having lunch with an autistic kid isolated at school, stopping work to feed a disabled customer at a restaurant, or inviting a disabled teen on a date. The abled person is then celebrated for their goodness, with the disabled person turned into an object on which the able person acts. Again, structural issues leading to the need for abled intervention vanish.

In the third type, often distinguished as “tragedy porn,” a horrible situation involving a disabled person is displayed, sometimes with comments about overcoming or courage, with the goal of providing perspective on your own (presumably not as bad) troubles. Perspective can be good, but again, the disabled person’s experiences are being leveraged as a tool to make the viewer feel something.

As aggregators looking for viral content to keep getting those Super Bowl/Gaga-related clicks picked up my tweet, my son’s dancing became a vehicle for inspiration porn of the first type.

I don’t really want to link to the bad coverage. Some headlines emphasized the way it moved people to tears, centering not my son’s joy of dancing, but the emotional reaction of those watching him. A slick video montage of the dancing and pictures opened with, “His father says he’s non-verbal, but…the singer [Gaga] spoke for him.” That’s not what I said, of course. Nico communicates eloquently in the clip, even if I don’t know whether “Born this way” is a message he’s currently consuming.

Inspiration porn rarely considers the socially-constructed obstacles to broad success for people with disabilities.

Others flattened Nico’s attributes to one of my least favorite words: cute. My son is actually pretty cute, as are many disabled children, because kids are cute — but cuteness is the least interesting thing about him. Moreover, as literary critic Sianne Ngai observed, “Cuteness is a way of aestheticizing powerlessness.” Many disabled adults, especially those with Down syndrome and Little People, are treated as perpetually cute children.

Celebrity culture, of course, also drives away attention from the fullness of my son’s agency because, go figure, people are much more concerned with famous people than with my 10-year-old boy!

I’ve been lucky enough lately to have my work on my son’s consumption of culture shared by some pretty famous people on social media (acts of self-promotion for them, to be sure, but I am grateful). So when Lin-Manuel Miranda, J.K. Rowling, or DJ White Shadow (Paul Blair, who works with Lady Gaga) share my tweets, I get a glimpse into the celebrity social media world. I recognize that for most, these are stories about how awesome the celebrity is, rather than the complexities of celebrating and supporting the full, rich humanity of people with disabilities.

Cuteness is the least interesting thing about my son.

Given all this, does going viral help? I’m honestly pretty proud of the six words I chose for the video. Nico was, in fact, born with Down syndrome. Down syndrome, or Trisomy-21, is a genetic mutation that happens just post-conception, when the embryo ends up with three copies of the 21st chromosome, rather than the usual two.

So while Lady Gaga’s line “Same DNA, but born this way” isn’t quite true — my son has more chromosomes than most humans, though made with the same essential building blocks — it’s certainly something he was born with. Moreover, my son is not suffering, as anyone watching the video can see, despite broad stereotypes that disability is necessarily something to mourn. He does have needs, but so does my neurotypical daughter. Kids have needs! And my son’s are more particular than “special.”

The short tweet was intended to suggest that disability belongs in Lady Gaga’s broader argument that we should accept and celebrate difference. It is, for disability rights activists, a political argument, because diversity right now has real power. Major corporations hire VPs of Diversity. Universities create divisions to promote diversity. Because disability is a part of humanity’s natural diversity, it needs to be part of the important conversations we’re having about inclusivity.

Disability is a part of humanity’s natural diversity.

Furthermore, the tens of thousands of Lady Gaga fans from around the world — most of the traffic has NOT been from my disability rights network — seem to get it. For all the superficiality of any single tweet, people seem to be understanding the intention behind the six-word message. Nico’s battle for acceptance of who he is is part of the broader fight for other marginalized people to be accepted for who they are. We have to unite. Disability as identity and disability pride may be familiar concepts within the disability rights community, but they’re still pretty radical for the ableist world as a whole. Maybe this tweet has done a tiny bit of work in that direction.

One of my son’s fundamental attributes is his desire to be seen, especially when dancing. He runs to the front of auditoriums in order to dance to live music. He gets up from the table or couch at critical moments when listening to favorite songs, says, “Mommy! Daddy!” and then dances. Look away even briefly, and he’ll repeat your name, demanding that eyes stay on him. He dances, I often say, like somebody is watching.

My son dances, I often say, like somebody is watching.

Putting his stories in front of broad audiences means that they will be filtered, all too often, through ableist media lenses and become vectors for superficial inspiration porn. But at their best, little interactions like these serve as an entry point to including disability in the broader quest for radical inclusivity.

Clickbait media or not, as I watch the video shares pile up, I do feel like we might be at least a little closer to the right track, baby.

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