What Will You Tell Your Kids? A Ten-Year Retrospective

Anniversaries are funny things. Normally I don’t pay too much attention to them unless someone brings it up in conversation or I find a link to a specific event on the Web. I won’t pay as much attention to the anniversary of a store or building, for example, but certain events might come to mind such as the twentieth anniversary of September 11 or the fifty-fifth anniversary of Star Trek. As a result, most of these events fly by unheeded, even when they represent something that has a personal stake in it.

I decided that at least one anniversary had rather special significance attached to it that I wanted to revisit now that I was a decade older and had gained a better understanding of myself during that period of time. In particular, I wanted to revisit a piece I’d written and acted in that reflected my anger at being treated differently by people who didn’t understand my facial paralysis.

“What Will You Tell Your Children?” is a piece written, produced, directed, and acted in by myself, with our mother Linda Freedman filming it at my talent agent’s studio in July 2012. Surprisingly, we finished it in one take and released it shortly thereafter on YouTube. The intent behind the monologue was to showcase an example of how someone judged me based on the condition that caused my facial paralysis, Moebius syndrome. Too often when I was younger, I had people confuse my condition with Down syndrome or another form of neurodivergence, and unfortunately, when this happens repeatedly, those moments stick with you. Creating this work was a way to release some of that anger and also, to a lesser extent, to show what it might be like from the point of view of the offending person whose behavior caused me to feel hurt.

To put the video into context, when I was younger, there were many people who simply wouldn’t understand what Moebius syndrome was. Often I would run into people who would stare at me or look away altogether. My phrase for this was literally “getting the Look,” when you know someone has seen you but hasn’t got the courage to talk to you. Instead, they walk away. Regarding the content of this video, I was walking down a street one day when a woman and her young daughter passed by me. The woman pulled her daughter closer to her after taking a glance at me, and that in turn became the inspiration for this video.

It’s important to note that I bear no real malice toward that mother or other people who behave this way. Especially when you deal with young children who don’t know any better when they stare at you, ideally you shouldn’t take it too personally. It’s when you have to deal with people who condescend to you because of your disability or act like bullies that things can get a lot more complicated. Nonetheless, while I try to let these behaviors roll off me like water off a duck’s back, over time they can and do contribute to a sense of not feeling like a whole person. While I don’t suffer from body dysmorphia, living with my facial paralysis often meant living with other people’s perceptions of what kind of individual I might be from their point of view. Ten years after this video was created, I know that I’m a much different person and that I’ve found greater self-acceptance, but it took a while to get there. I believe this video helped that process significantly. I’ve also noticed that because of my greater self-assurance and maturity, people don’t seem to notice the facial paralysis as often and treat me more like the adult I am. For that, I’m extremely grateful.

The link for my video is here. I hope you enjoy it.