(Written by Lili’s parents)

I believe at a certain point in our lifetime, we have all used the R-word. We are all guilty here… And yes, being part of the lucky few certainly changes things. We took this word out of our vocabulary when we confirmed Liliana’s diagnosis. We encourage other people to stop using the R-word, but to be honest I try not to overreact when I hear this word. We educate and advocate. When I was browsing my Instagram last week, I saw this story about how this “comedian” suggested changing the R-word to “your idea has an extra 21st chromosome”, making a direct reference to our rockin’ kids; to Liliana. And it hurt me, because, even though this person doesn’t know Liliana, he is making fun of her, and encouraging others to do the same.
I am so blessed and happy to know that The National Down Syndrome Society has our backs, not only in important matters like passing bills in Congress, but also making sure our voice is heard in matters like television shows.
Sure, this Netflix special is not the worst thing that is happening in the world right now; this TV show is not the worst thing that has or will happen to our community. Maybe some will see this fight pointless since most likely his “comedy special” will continue on Netflix. But this fight matters to me, because of Liliana and because it’s already bad enough to hear the R-word, I don’t want to start hearing in our slang “your idea has an extra 21st chromosome” — unless your idea is awesome, your idea is strong, your idea is to thrive to succeed, your idea is beautiful, happy, opinionated, crazy adorable, like Liliana McLuckie is.

Did you miss the statement from NDSS’ staff, Kayla?

Watch it here!