We met at Jewish summer camp in 2010 at Brandeis University. This summer, we decided to take the lessons we learned at our community-service oriented program that summer and turn them into action. We are three college students driving around the country interviewing siblings of individuals with developmental disabilities. This issue is dear to our hearts because two of us have siblings on the Autistic Spectrum. Before this trip, we found it incredibly hard to find diverse stories about how having a sibling with a disability affects other siblings. Funded by an “adventure” grant from Princeton University where Claire studies, we decided to broaden the narrative on the sibling experience by interviewing as many sibs as possible, ranging in age, ethnicity, gender, and socio-economic status. We began in Houston, Texas and are driving in a circle until we end up back there.
One of our favorite stories that occurred on the trip thus far is from New Orleans, where we interviewed two boys who are two thirds of a whole in a set of triplets. Their sister has autism and a seizure disorder. As we have seen many times, sibs seem to grow up much faster than other neuro-typical siblings, exhibiting maturity comparable to graduate school students or wise grandparents. The boys told us about how responsible they feel for their sister and how they stand up for her when others tease her, even when those others are adults from their church. They choose their friends based on whether or not they get along with their sister and they plan to care for her together for the rest of their lives. Their parents never prodded them to do any of this.
This is one of the more positive stories that we have heard, although we have also been witness this summer to a lot of the guilt, resentment, anxiety, and frustration that many times go hand-in-hand with being a sibling of someone with a disability. We have heard siblings say they want to care for their sibling for the rest of their lives. We have heard siblings say that once they are out of the house, they are finished. No one is to say which story is more valid or conventional as every story we listen to is drastically different from the one we heard earlier that day. Our goal is to broaden the narrative, see what services are available for siblings and where support services are lacking.
So what’s next? The easy answer is Claire will give a quick presentation at Princeton and Ellie will use the research for her psychology major. But, that is far from all. We have looked into the idea of writing a book, of starting youth clubs, of having a sibling conference. Our main goal is to provide a network of resources for sibs, of other sibs, organizations, and opportunities to share their stories. We believe that helping to build and strengthen a vast network of sibs would allow the community to become more outspoken advocates for themselves and their siblings.
Renee Frederick, Claire Nuchtern and Eliana Rosenthal are the Sibs Journey Team- three college students on a cross country journey this summer to learn more about what it is like to be a sibling of someone with a disability. Claire is at Princeton University studying history, Ellie is at Brandeis University studying Near Eastern Judaic Studies and Psychology, and Renee at University of Texas-Austin studying Plan II Honors and potentially Urban Studies or Public Health. Follow their journey on their blog, read more on Facebook or connect with them on Twitter.
Read our last post: My Journey From Camper to Staff Member
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