There has been a lot of buzz within the Down syndrome community on social media lately about a new docu-series called Born This Way, which follows seven young adults with Down syndrome. The show premiered on A&E yesterday. I will be honest and confess that I wasn’t going to watch it. It’s hard for me to explain why but … I so often find myself outside of the “mainstream” of Down syndrome parents (and so many other things!), that the more something is hyped, the more I tend to want to steer clear of it. But I was urged by a couple of friends whom I genuinely respect to watch it and share my thoughts, so here they are:
First, I was happily surprised to see in the opening scene two young men with Ds walk into a pub that is literally a few blocks from my house. I’ve been there numerous times. I had no idea that any sort of reality show was being filmed in my town. The series takes place mainly here in Southern California, in various locations throughout Orange County and L.A. Anyway, it was cool to see two dudes with Ds enjoying a beer in a pub.
The series premier introduces us to the seven young men and women who have Down syndrome. They include Megan, who has lived in Denver since she was born, but who dreams of moving to L.A. to be a film producer (this video of her went a little bit viral on social media a couple of years ago); John, a rapper; Steven, who has Mosaic Down syndrome and who works as a dishwasher at Angel Stadium; Rachel, who I believe is the oldest of the group at 32, who describes herself as “boy crazy”; Sean, who is a self-described “lady’s man” and is the subject of Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion (which I reviewed here); Elena, born in Japan, and facing the most difficult struggles of the group with regard to self-acceptance; and Cristina, the peace-maker of the group.
One of the first things that jumped out at me was, “Where are all of their non-disabled friends?” I understand that this is a show focused on Down syndrome (which I appreciate, and I think it’s high time), but I couldn’t help wondering if it’s true that adults with Down syndrome, despite what may be Herculean efforts for inclusion during their childhoods, end up being surrounded solely by other people with Down syndrome in their adulthood. It’s not that I see that as a bad thing – at least not totally. I get that human nature drives us to seek out people like ourselves, because it is among those most like us that we tend to feel the most at home. It just makes me wonder about the point of inclusion. Isn’t it so that everyone has a place of belonging in a diverse community – both with disabled and non-disabled peers? Or is the point really just to destigmatize disability and teach tolerance in an ableist society?
Speaking of abelism, there is plenty of that in this show. It saddens me that even within the Down syndrome/disability “community,” we continue to measure people with an ableist yardstick, valuing people based largely on what they CAN do. I understand the need to break down the barriers that have always existed with regard to disability – and specifically intellectual disability – where the focus has always been what they CAN’T do. I get that we are trying to promote a more positive perception of people with disabilities/ID. But I often feel like that agenda is misconceived. The fact is, there have been and always will be people in the world who CAN’T do certain things. Every single person in the world has their own personal list of things they CAN’T do. We all have limitations. Why does that have to be a bad thing? Why does “limitation” have to be a bad word? No, we are none of us capable of everything. We are all of us capable of some things. I feel like a better message to promote is that it doesn’t matter what someone is capable of or what they’re not capable of – we all are worthy of respect, compassion, dignity, and opportunities, solely because we are human.
Which leads me to another point prominent in Born This Way, and in the Down syndrome community at large, and that is independence. The notion of independence is held up like the holy grail in Down syndrome parenting groups: everyone wants to see their kid grow up to be “independent.” I’m sure that means different things to different people, but it often seems to comprise visions of our kids with Ds growing up and getting married and living on their own. And I’m not saying that those things aren’t possible, but the truth is that they are rare. Marriage for people with Ds/ID is becoming more common, but the vast majority of adults with Ds/ID will need lifelong adult help, supervision, and guidance. In other words, very, very few will ever have the capacity to drive or live completely independently.
Again, I wish this were not perceived to be such a negative thing. Rather than pushing for independence, I personally am way more in favor of pushing for autonomy. I highly doubt that Finn will ever be able to live independently (and I wholeheartedly accept that), but I want very much for him to have autonomy – the ability to pursue his own happiness, make his own choices, express his own thoughts and feelings, and get his needs met.
There was a scene in the show where Elena becomes very upset with John because he keeps saying that she’s “crazy.” Elena doesn’t appreciate being called “crazy” – it hurts her feelings. When she expresses this to John, he explains that he “doesn’t mean it that way,” and is “just joking.” Sound familiar? It’s interesting me all the cross-prejudice that exists in the world. These are the same exact typical responses one hears when addressing the use of “retard,” or “retarded.” “I didn’t mean it like that,” you’ll hear. Throwing around “crazy” is ableist because it demeans and marginalizes mental illness. It’s really a matter of being informed and educated about these things, and obviously nobody has educated John about calling people “crazy,” so my comments here are not meant to be derisive of him, but rather just an interesting observation.
Elena, as I said, struggles the most with self-acceptance. She was born in Japan to a Japanese mother and … I’m not sure about her father, but he’s neither Japanese nor American. In any case, Elena’s mother acknowledges that it took her a good twenty years to fully accept Elena for who and what she is. In Japan, any sort of disability is very much looked down upon and seen as something that brings shame on the family. I don’t know how old Elena was when the family left Japan, but she has clearly been profoundly affected by her mother’s struggle to accept her. You really can’t hold it against the mother, though, as we are all products of our cultures. It’s just a very tragic reality, and a stark reminder of how deeply parents’ acceptance/non-acceptance of our children shapes their self-image and self-esteem.
At least one person I know (also the parent of a young child with Ds) expressed some doubt about how realistic this show is. I disagree – I felt it was very realistic and authentic, and didn’t get a sense of it being scripted or staged. However, the individuals chosen for the show are obviously “the cream of the crop” as far as Down syndrome goes. These young adults are all “high functioning,” attractive, healthy, and well-spoken. There are no non-verbal, medically fragile people with Ds on this show, and one parent of one of the individuals with Ds comments (maybe in the preview for the next episode – I can’t remember) that an expectant couple with a prenatal diagnosis might watch this show and hopefully see all the possibilities. Again, a well-intended comment, but an ableist and misguided one, I feel.
So, you may ask: what picture of Down syndrome would I wish to promote? Honestly, I don’t have a simple answer to that. I just know that only promoting “the cream of the crop” only serves to further marginalize and dehumanize those who don’t reach that artificial ideal. I wish we could present a more balanced picture of Down syndrome, and promote compassion and belonging for all.
All of that said, I did enjoy the show, and I do plan to watch the rest of the series. I am interested in how the stories unfold, and how the relationships between these individuals continue to develop. I think the relationships and interactions between them were what I most enjoyed. There is ribbing, and negotiating, and arguing, and peace-making, and compromising and hurt feelings, and confrontation, and contrition going on. This moved me more than anything. This is being human.
You can watch the full show online here.