“Only the Rebels Change the World”: Celebrating Down Syndrome

Happy World Down Syndrome day, friends! I love the idea of a day dedicated to everyone out there who ROCKS that extra chromosome, many of whom I’ve had the pleasure of making music with as a music therapist.

In celebration of WDSA, there is a public service announcement circulating featuring the lovely Olivia Wilde. Titled “How do you see me?”, this video fights the image of disability by challenging commonly held notions of disability, including helplessness, dependence, and disconnection from others. As I watched it, however, I couldn’t help but feel this video also places Olivia Wilde in the “leading lady” role and relegates the real star – AnnaRose (the woman with Down Syndrome that we see at the end) – in the background. I would have loved to see a video where AnnaRose, not Olivia Wilde, was depicted as the joyful participant in her own life.

Thanks to this article, I viewed a second video that I feel more aptly captures the way we should be celebrating World Down Syndrome Day:

There are a couple of important things about this video that make it, in my mind, a more powerful advocacy tool than the first video:
1) This film points out the contrast between what others (his family) believe he is capable of, and what he can actually accomplish.
2) The boy in this video is portrayed in the same way neurotypical teenagers are often portrayed in the media – skipping class, hanging out with friends, pursuing romantic interests, contemplating tattoos!  In other words, he is portrayed as a teenager because, without a doubt, that’s who HE is.
3) This film was created BY a girl with Down Syndrome, Serena. I love that we get to meet her at the end, and I ALSO love that we meet her after we have watched the video – it removes all expectations for what the video should or should not have been.

At the end of the video, filmmaker Serena says (in Spanish, with English subtitles) that “only the rebels change the world”.  Kudos to the rebels in this film, and the rebels I know who are fighting for inclusion, acceptance and understanding everywhere!

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