What happens when reality TV takes on Down syndrome?

Reality TV ruins everything. The genre feeds off stereotypes, linking the twinned emotions of fascination and disgust. It thrives by portraying its subjects as Other, rendering them as objects to loathe, mock, desire or praise. If there’s something you really care about, the last thing you should want is to see it portrayed on reality TV.

So it was with intense trepidation that I watched the first two episodes of “Born This Way,” a six-episode show from the A&E network about seven Californian millennials with Down syndrome. I am the father of a boy with Down syndrome and a critic of the ways we portray disability in the media. There’s so much wrong with how we represent Down syndrome in particular, but reality TV seemed like the worst possible vehicle to correct those wrongs.

To my great surprise, the show is … basically fine. The seven adults with Down syndrome are interesting people living complex lives; their parents generally address the issues related to being a caregiver of a disabled adult clearly,  and the show presents many honest and important moments. At its best, “Born This Way” shows its characters addressing work, housing, romance, friendship and other aspects of adult life that, perhaps, most viewers don’t associate with developmental disability. At its worst, the show relies too heavily on manufactured drama and does little to promote inclusion of people with disabilities in the typical mainstream society.

The Down syndrome community has always been caught between the freak and the angel. It’s also caught between trying to promote acceptance of neurological diversity while arguing that people with Down syndrome are “just like you.” We could use a good dose of reality to help the public work through these contradictions, so long as they tune in and really get to know Elena, Megan, Steven, Sean, Rachel, Christina and John. The seven chosen characters are, of course, not representative of the whole spectrum of Down syndrome — reality show producers are in it for the money, for all the A&E head of programming talks about celebrating diversity. They picked seven individuals who will look good on camera in the eyes of mainstream America, and I’m mostly OK with this. We, as a society, tend to regard people with Down syndrome as cute, perpetual children. Seeing adults speak for themselves about adult topics can only help work against this misperception.

The show falls into predictable reality-show tropes. The seven are each edited into an identifiable role — the ladies’ man, the friend, the rapper, the conciliator, the new girl, the leader and the inevitable drama queen. The producers look for tension, editing scenes to maximize effect. Sometimes, the editing works. In episode two, Sean (ladies’ man) has a difficult conversation with his parents about moving house. They are retiring, they want to downsize and he doesn’t want to hear it. There’s powerful emotion to the scene and no easy answers materialize. Similarly, when Megan (the new girl) announces to the gang that she wants to make a documentary about Down syndrome, Elena (drama queen) gets upset, saying that that the whole “D.S. thing” upsets her because “I don’t know why God gave me that in the first place.” Elena’s mother then reveals it took her 20 years to accept her daughter’s diagnosis, something Elena clearly internalized. 

This is standard reality TV fare, but in my online Down-syndrome-related communities, I’ve seen many parents express dismay about Elena’s casting on social media. As I’ve discussed before, the debates about prenatal testing and abortion push our community to relentlessly focus on the positive, often to the extent that we conceal important issues and challenges. I was worried that “Born This Way” would be homogeneously happy. This kind of pushback against the “angelic” but false image of Down syndrome, especially when uttered out of the mouth of a person with the condition herself, feels appropriate.

Still, this sort of interaction is obviously highly mediated. Early in the second episode, Rachel and Elena get into an argument, and Rachel starts to cry. You can hear a producer pushing Rachel to articulate why she’s upset, to make the drama transparent for the viewer, setting a plot arc in which Rachel and Elena actually become friends. The intervention of producers, the cut scenes when parents and the seven talk “honestly” to the camera (with producers’ prompts sometimes audible), are useful reminders of just how fake “reality” can be.

Disability has been a frequent subject of Reality TV, with shows such as “Push Girls,” “The Specials,” “Undateables,” and now “Born This Way” joining the plethora of shows depicting Little People. “Our Little Family” shows the lives of Dan, Michelle, and their three children, all of whom have achondroplasia, a form of Dwarfism. Like “Born This Way”, it’s a pretty good show attempting to depict atypical lives, though also relying heavily on cuteness and drama for ratings. The “Little Women” shows, in LA and NYC, are no worse than Bravo’s “Real Housewives” series, but also no better.

Leah Smith, director of public relations for Little People of America, told me that while these shows raise awareness, opinion on these shows is divided; Hillary Jorgenson, who has Russell Silver Syndrome (“a form of primordial dwarfism”), agrees, telling me, “people are watching because they’re drawn in by what they view as the oddity of physical difference.”

And that’s what worries me about “Born This Way”: Even with the best of intentions, is it possible for someone outside the community to watch the seven and not be a voyeur of otherness? Can a show featuring scene after scene in isolated, Down-syndrome-only environments (homes, a recreation center, a bowling alley seemingly cleared out for the gang, a vacant section of a beach, etc.) help promote the genuine inclusion that our community so desperately needs? I don’t think so. The neurotypical audience remains on the outside, looking in.

Such isolating imagery is not a new problem. Writer and disability advocate Elsa Sjunneson-Henry told me, “Reality TV about people with disabilities often utilizes the ‘freakshow gaze’ — a way of looking at people with disabilities as distinctly other for the entertainment purposes of the able bodied.” Writer s.e. smith agrees. “Reality shows that include disabled people — like Christine Ha on ‘Masterchef’ — include us in a value-neutral way as part of society,” smith writes. “When a program focuses on disability as its primary point, though, it serves to create a form of segregation, suggesting that we need to be isolated from ‘regular people.’ They’re really just painful reminders that we don’t belong.”

“Born This Way,” at least so far, provides plenty of such reminders. The show has great intentions. I like seeing adults with Down syndrome on my television screen, empowered to speak for themselves. In the end, though, I’m still stuck on the way reality TV inevitably falls short. Other than the series’ opening scene of Sean and Steven drinking beer at a bar, the show so far depicts a Down syndrome community largely segregated from the rest of the world. This may have made it easier to film, but real inclusion is often tricky and uncomfortable. Perhaps the show just isn’t willing to get real enough.