Claire graduated from Princeton University with a major in public policy. At Princeton, she has studied education and criminal justice policy and her senior thesis focuses on activism within the autism community. Claire participates in many civic engagement activities on campus and believes strongly in the power of students to advocate for a more just society.
Being a sib is hard, complicated and annoying while simultaneously joyful, hilarious and heart-warming. Try as the how-to books might, it is impossible to describe our lives in the context of a paragraph or even a single book. Being the “normal” child comes with an invisible and pervasive weight that many fail to recognize. Whenever my family faced challenges, I always saw my role as being the one to quietly keep things together. What was often even harder than navigating my own family life was when I would start to compare my family to my friend’s families. The insidious feeling of jealousy started to color all of my family memories until it was hard for me to stop thinking about how my brother and my family weren’t “right”.
I wrote the paragraph above two years ago and yet so much has changed since then. Back then, we were still pre-road trip, pre-conference and pre-being inspired by sibs across the country. What fascinates me is how much my conception of disability has shifted both as a result of this project and as a consequence of how this project has created changes in my relationship with my brother. Creating Sibs’ Journey opened up a point of dialogue in my family. Suddenly, we had to talk about the elephant in the room -- the fact that none of us were that comfortable sharing our feelings about our family’s own journey. I began to talk to my brother about why this project meant something to me and most importantly, why this project was not about blaming him for anything at all. Instead, we discussed how growing up with him as a brother shaped me in really powerful and positive ways. Of course, I cried through all of these conversations but that release has lifted that weight I always used to carry around.
This project has given me new insights on disability. Through conversations I had with other sibs and my brother, I decided to dedicate my senior thesis to cataloguing activism within the autism community. Specifically, my thesis focuses on the evolving role of self-advocates as the DSM continues to alter the definition of autism. These self-advocates question the ways in which we label others and push back against our tendency to exclude them from the conversations that matter. They have inspired me to question my own assumptions about what constitutes “normal” and they have given me a powerful new way to be an advocate with my brother rather than for him.
None of these shifts would have been possible without the encouragement and advice of the many sibs we have had the honor of talking to throughout our journey. To all of you, thank you for sharing so much of yourselves in those moments and know that you are the fire that fuels each of us.