Lately I have been thinking a lot about the idea of making good trouble…
I mentioned it during my panel on Leadership and Policy Making at the 2023 Motormorphosis Conference. In it, I called on nonspeakers to begin to stand on their own towards self determination.
Nothing about us without us needs to be more than just blogs to our own community. It means moving into the world of neurotypical institutions and government committees at every level. It means coming out from behind the curtains to reveal what Oz looks like. We aren’t in Kansas anymore, Toto.
Having communication isn’t enough if we aren’t able to safely reside outside of the homes we grew up in. Each state decides what my life may look like in the future. If I was in a wheelchair requiring 24 hour care, I would get it. But I am non-speaking and autistic so my choices are taken away from me.
Why aren’t we marching in the streets? I am insulted by what lies before me. Giving us the same rights as any other physical disability is a basic tenet, is it not?
It is the last great frontier. We’ve moved into the institutions of higher learning. We have movies and books galore. What we don’t have is the basic human choice of how we will live and where.
It is a hard, hidden topic in our community: what happens in the future? How will we shape this kind of frightening and avoided discussion into one that has new meaning, independence, and hope?
My life is more than what it was; it shouldn’t involve dependence on my parents living forever.
I feel it is important to move beyond our fears and start planning together. No one is coming to save us. We need to save ourselves. So let’s start making good trouble and get on the train!
About the Author
Ethan Nagy views himself as a renaissance man following his own interests, including history and math. Ethan is a published author, having contributed a chapter to the book Underestimated: An Autism Miracle. Joining the NLC is the perfect merging of his love of writing and his newfound passion for advocacy. Ethan resides in Oregon with his family.
