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 studies psychology and Near Eastern and Judaic Studies at Brandeis University. Aside from Sibs’ Journey, she is the co-chair of Relay For Life at Brandeis as well as the Undergraduate Department Representative for the Hebrew Department. She is also a research assistant at the Lurie Institute for Disability Policy. She is passionate about poetry, reading in general, and cappuccinos.
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 spent the majority of my life hiding the fact that I am a sib. I refrained from telling people about my family, my home situation, or my feelings about the two. In essence, I didn’t know how to tell my story. I could never seem to find the right words to use and I could never predict exactly what types of responses I would engage. After many years of contemplation, I have come to the conclusion that my underlying fear was that of others finding out that I don’t hold a never-ending, undivided, unbreakable love for my sister. I don’t even know if I could put into words how I feel about her. She is loud and quiet, amiable and malicious, altruistic and cruel, family and enemy.
Throughout my childhood, I struggled a lot with figuring out what my role was in my family. Though I was the younger sibling, I had the responsibilities of an older sibling, making sure my sister was always safe, comfortable, and, most importantly, not being made fun of or abused. I often wanted my sister to be able to stand up for herself, but didn’t want that at the same time. I constantly felt the need to be the “perfect” child, the one who didn’t throw tantrums about not being able to watch more TV and the one who didn’t struggle to read simple children’s books well into middle school. In my head, I subconsciously fought an internal battle to be the quintessential child for my parents. I not only wanted, but needed, to be someone that they could be proud of. And, for my sister, I wanted to be someone that she could look up to. I partook in even greater conflict trying to receive the attention my sister always gained, for her educational pursuits, constant car-rides to and from various therapists and groups, and outbursts. I battled for my parents to read me stories, or take me to the movies, or to have long conversations about me well into the night.
I am embarking on this journey because I am unexplainably curious, motivated, and ready to take on this difficult factor of my life. I have been avoiding talking about it for too long and I don’t think I can keep it up for much longer. 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.