Born This Way: My Thoughts

I hesitated to comment on the new A&E series Born This Way because I was a bit skeptical of it. The series follows the lives of seven young adults with Down syndrome. Sounds great, right? It did to me, too…but I’ve been disappointed in a number of media portrayals of people with Down syndrome, so I was skeptical that I’d enjoy this new show.

But I’ve now watched the first three episodes, and I feel like I can comment. In three words: I like it. I actually like it a lot more than I thought I was going to. And Chris likes it very much, too, which surprised me a bit because he normally doesn’t really venture into the world of Down syndrome. I mean, he does because he lives in it to some degree every day! But he doesn’t tend to get into it much other than that. For one thing, he doesn’t have a lot of free time around working. But second, he likes to see Sam as Sam. He doesn’t tend to like seeing portrayals of “what life is like with an adult with Down syndrome” because it’s not necessarily a reflection of what our lives will be like. He prefers to just see Sam as Sam and wait to see what the future will hold. At least, that’s what I glean from what he’s told me. It’s not something we really talk a lot about—I mean, it’s kind of like the fact that he likes action movies and I don’t. He watches them on his own, and I’m content to miss them. Same thing with Down syndrome–focused things—I watch them on my own, and he doesn’t mind missing them. I think he would watch them if I asked him to, but it’s just not something he particularly cares whether he sees or not.

But he watched Born This Way with me, and he really enjoyed it. He said it made him feel very hopeful about Sam’s future. I have to admit, I felt the same.

I think what I like about the show is that in my opinion it shows a good representation of personality types. Most of the people on it are comfortable with having Down syndrome, for example, but there is one woman who is not—she admits outright that she hates it and that she doesn’t even like people to say the words around her. It’s heartbreaking to see how uncomfortable she is with herself, but at the same time I appreciate that she’s on the show because I’m sure there are others who feel as she does. There’s another young woman on it who is very confident in herself—and it shows. There’s another young woman who seems to be the peacemaker of the group—very concerned with making sure no one is left out and no one’s feelings are hurt. There’s a self-described ladies’ man who is struggling with the transition of moving out of his parents’ house (where he’d prefer to stay) and moving into his own place (where his parents feel he’d be best off). There’s an aspiring rap artist who inadvertently offends at least one of his peers sometimes. And there’s a young couple in love, who want to get married but who are so incredibly careful and pragmatic about the logistics of getting married and building a life together that I find myself in awe and wishing everyone were as thoughtful about entering the institution of marriage as they are. And there’s even one young man with mosaic Down syndrome. (Mosaic Down syndrome is where only some of the cells in the body have an extra chromosome. It only accounts for a very small percentage of cases of Down syndrome, and it usually—but not always—means that the person is somewhat less “affected” by Down syndrome than someone with trisomy 21, which is the type of DS Sam has and most other people with DS have.)

So I like that, like any “reality show” of this type, you get a wide representation of people. It’s proof that they’re not “all alike,” you know? They’re not just a group of perpetually happy people living in a bubble of oblivion. They’re real people with complex thoughts and feelings.

And honestly, their problem-solving skills (the very thing a geneticist told me Sam would never have!) are incredibly impressive. When conflicts arise among the members in the group, they work together to solve it. They address issues head-on and frankly, but with care for the other person’s feelings. I think many of us could take some notes from them, myself included. Perhaps it’s limiting and stereotyping to indicate that people with Down syndrome have strong interpersonal skills, but if the seven people on Born This Way are at all a representation of the community, I have to say I’m pretty impressed. I found myself comparing their way of handling conflict with what you see on typical reality shows (we don’t watch a ton of them, but we do watch a couple), and their frank way of handling it is just so much more useful than the petty cat-fighting you see among a lot of people. I’m making generalizations, I know, but it is something that jumped out at me and impressed me.

Let me tackle some of the objections to the show I’ve heard and share my thoughts on those.

All the characters are high-functioning. That’s not reality in the world of Down syndrome. Well, I have a few thoughts on this. First of all, I don’t care for classifying people by their supposed level of functioning. Aren’t we all higher functioning in some areas than others? And how and why is one person’s area of high functioning somehow considered more valuable than another’s?

As a somewhat silly but still valid example, consider my two kids: Theo is very quick-thinking and has an amazing memory for facts, which means people consider him to be smart. (And indeed, I would agree—he’s a smart kid.) But his utensil skills are abysmal. When left to his own devices, he eats soup with his fingers. I’m not joking. Sam, on the other hand, will likely never been seen by the greater population as what is classically considered “smart.” But he has impeccable table manners and amazing utensil skills. When left to his own devices, he eats ketchup very carefully with a fork. I’m not joking. And he will ask for a napkin when it’s needed, carefully blot his lips and wipe up any spills on the table, and then continue eating. I sometimes marvel at the fact that he’s 3.5 years old and developmentally delayed, yet I could easily take him into a four-star restaurant and be proud of his table manners. I could not do that with my seven-year-old. Society at large would consider Theo to be “higher functioning” because he has the brains that are valued by society…but I would argue that Sam’s social graces are no less important than Theo’s brains.

It bothers me that one area of strength is valued as somehow “better” than the other. It implies a value system that I’m uncomfortable with. I prefer to think that we all have areas where we excel and areas where we struggle—regardless of whether we have a disability or not.

So anyway, I don’t like the label. But setting that aside, there are a few things I know about Born This Way. First of all, at least one of the characters on there was not always what people would describe as “high functioning.” His mother and I are friends on Facebook, and she’s been very open about the fact that he had to work really, really hard to get where he is. For example, he didn’t speak until about fourth grade, I believe. So brushing people like him aside as “high functioning” and thus not a good representation of Down syndrome isn’t very accurate at all—and it’s a bit of an insult to him, since he worked very, very hard to develop his skills over the past twenty-some years.

And second, at its core this is reality TV. It was produced by the same folks who gave us The Real World, in fact—one of the first reality shows! It’s not a documentary, it’s reality TV. And the goal of reality TV is to get viewers. So naturally, the producers are going to pick people who are doing things, leading interesting lives…they want viewers! Imagine one of the reality dating shows—they always pick the contestants who do something of interest. They don’t pick ordinary folks who are just sitting around, eating a bowl of cereal for breakfast, then plopping down in their den to do several hours worth of work before picking their kids up from school. (Ha ha, sound familiar?!) So to me, it makes sense that they chose seven adults who are out in the world doing things, meeting people. It makes for interesting TV, and interesting TV means ratings.

It’s too scripted. And once again I say, it’s reality TV. All reality TV is scripted. It just is what it is…take it if you like it, leave it if you don’t. I don’t actually feel like it’s overly scripted—a lot of it feels pretty natural. But I’m sure they do create situations for the seven adults that they feel will make for interesting viewing. Because again, ratings.

The parents are interviewed too much. This boils down to an argument that parents shouldn’t be speaking for their children. This has come up a fair bit in the special-needs community over the last year or two. According to some people, it’s the children’s story to tell, not the parents’ story.

I do think there’s some validity to this. I try to keep it in mind when I talk about my kids. I don’t want to speak for them when I shouldn’t, or say something that will embarrass them. And I’m sure I have on some occasions, for which I’m sorry. But I do try to keep it in mind. When Theo’s old enough to share his own story, I hope he will, because it’s fascinating. But if he chooses not to, that’s fine too. Same goes for Sam—when he is older, I hope he will speak his own mind about what it’s like to be him.

But that doesn’t mean I don’t like to hear from parents. When done respectfully, I think parents can talk about their children in a way that is helpful and not harmful. And the thing about Born This Way is that you have to ask who the audience is. Is it people with Down syndrome or other intellectual disabilities? Probably to some extent, yes. But it’s also their families and loved ones. It’s people like me, who love someone with DS or another intellectual disability and are happy to see these people’s stories being shared in the media. And I want to hear the parents’ thoughts. I absolutely want to hear the seven stars’ thoughts as well—and more of theirs than I hear of the parents’ thoughts—but I also like hearing from the parents. And I think the producers have so far done a good job of keeping the show mostly on the stars and less on the parents. I’m hoping it continues that way, but also continues to have a smattering of the parents’ views as well.

So there you go—my long-winded review of the first three episodes. If you haven’t watched it and you can, give it a try! To me, it’s not perfect, but it’s the best representation of Down syndrome I’ve seen in the media so far. (And yes, I liked Life Goes On and Glee. But I actually think Born This Way provides us with some more insight into these seven people’s everyday lives, which is useful. I actually enjoy that more than watching a made-up character like Corky on Life Goes On or Becky on Glee, even though I did enjoy both of those characters as well. And I definitely think all three are better than some other things I’ve seen where Down syndrome has been featured.)

Give it a try! I think this season has seven or eight episodes, and hopefully they’ll be back with a second season. But that, of course, depends on the almighty ratings…

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