I Struggle With Celebration

You know the videos I’m talking about. The ones with the child being asked to prom. Or the one about the kid being called into the basketball game to get a few minutes of play with his teammates.

I struggle with those for a couple of reasons. First, I love them. I love to see our kids get celebrated, to have a moment that’s about them. I love to see them get mobbed by their friends and family. I love that they feel included. I love to see their smiles and joy.

But I struggle because those moments are so fleeting and often surrounded by moments of isolation. I struggle because those moments, in a way, say, “You can be celebrated only if we allow you into our group.” I struggle because I don’t know what the next day will look like for those kids. Will the high have worn off? Will they still be loved as they walk/roll/get pushed through the hall? Was there any lasting change created, or was that just a fleeting moment?

I also struggle because I am desperate for everyone, not just classmates, to know my son for who he is. To celebrate him. Not in spite of his disability, but by knowing that disability is a part of who he is. I’m OK with him being asked to play by their rules. But I also want them to play by his rules. After all, isn’t that what equality and inclusiveness are about? The ability for both sides to find common ground and each gain from the experience?

I try not to be cynical. I try to see these heartwarming videos as a sign. Perhaps there is a movement towards radical inclusion going on. Maybe we are creating a world where everyone has the opportunity to be celebrated for who they are. But I want that world to be one that honestly includes people with disabilities. One where sometimes people with disabilities get to call the shots and are able to define the terms by which they are included.

In my ideal world, we talk about whether sports are accessible to everyone. And if the answer is no, perhaps we start looking for sports that are. In my ideal world, we create these events where kids get celebrated. They get asked to prom, etc. But maybe it’s not done in front of a camera. It’s just something that happens. It’s a great moment, but it’s not uncommon. It’s just how things are. It's not that I want my son to be in charge. I just want him to have a voice in this process. And sometimes I struggle with whether those videos provide kids with disabilities the chance to have a voice in how they are included in a world built by able-bodied people.

Learn more about teaching your child to self-advocate.