THE SIBS' JOURNEY TEAM
Renee was born and raised in Houston, TX and is currently a junior at The University of Texas at Austin majoring in Plan II and Urban Studies. Besides Sibs’ Journey, she is passionate about learning and mentors a sixth grader at KIPP Austin College Prep. In the summer of 2015, Renee will be biking from Austin, TX to Anchorage, AK through Texas 4000 to raise money for cancer research and other cancer fighting initiatives.
I am committed to Sibs’ Journey because I am a “sib supporter” - I am not a sib myself, but the community of sibs that I’ve had the privilege to know is full of kind, intelligent, and compassionate people who have genuine concerns about (and adoration for) their family life. This is a group of people who I see as powerful advocates - for themselves, their siblings, and their families. It is a cause that I believe in deeply.
My experiences with Sibs’ Journey have also taught me to be a better friend. Now that I have a better understanding of the sib experience, my sib friends know they can share anything with me, free of judgement. As a sib supporter, I don’t always know the right thing to say, but I have learned to be the friend that will listen and I have learned to advocate with them.
Sibs are a frequent reminder of selflessness and strength and they are a community that I am proud to support.
Claire is a senior at Princeton University majoring 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.
Ellie was born and raised in the Bay Area, California. She studied Psychology and Judaic Studies in college in Boston and is now pursuing graduate studies in psychology in Pennsylvania.
In terms of why I do Sibs’ Journey -- here’s a little bit about me. My sister, born a year and a day before I was, was diagnosed on the Autistic Spectrum when I was in middle school. Her official diagnosis is Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). Along with ADHD, NLD, and many other neurological disorders, she is, to say the least, complicated.
I am ready to learn and I am ready to listen. I am ready to find others like me. I am ready to find others unlike me. I am ready to hear more stories.