This is the story of a family I am blessed to be a member of, one that is comprised of five distinct people that, together by surname, by years of photographic history, by a shared address, make us a single unit.
My story is that I am a sister to two older sisters, a placement that privileges me to continuously live and learn from their infinite wisdoms – wisdom, in plural, because they are two very different people, offering me with very different life lessons.
My oldest sister, now a new mother, always gave me her old notes as I filled her space on the roster of many shared teachers throughout our respective pre-collegiate educations. Thanks to her, I am becoming ever more cognizant of what it means to live in my new role as an aunt.
The sister between us continues to remain, as anyone important one your life, a source of education and influence. When people engage with her socially, most immediately recognize popularized symptoms or signs of Asperger’s (thanks, but no thanks, Parenthood). In other arenas, however, there isn’t quite a title for my sister’s intellectual and developmental differences, but I wouldn’t say normalizing or placing them on a spectrum is all that important to my family.
Rather, we’ve found that what’s most important to us is what shapes her identity, independent of how it compares to the “rest of us” or “everyone else.” This language isn’t helpful and its hard-earned elimination from our view of her has enabled us to find a key source of unity: our shared Jewish religion, experiences, and values.
My mom’s fondest (or tear-jerkiest) memory of her three daughters puts Judaism at the center. My parents, oldest sister, and I were in the car en route to the airport to pick up my sister after her second summer at the Tikvah Program at Camp Ramah in Wisconsin; my oldest sister and I had returned a few days earlier from our summer together at Ramah Darom. With all three daughters in the backseat, one of us began to sing a Shabbat song common to the two camps, and this crossover invited all three of us to join in song in a different language – this coming from girls who usually struggled to agree on an English song to play on the radio. Regardless of what lay before us – for me, fourth grade, for my older sister, ninth grade, and for my eldest sister, her second year of college – we all bonded over a collection of z’mirot that replaced the music from the radio for the rest of the car ride home. From then on, it was clear that Judaism would be an irreplaceable experience for my sisters and me: my Judaism, my family’s Judaism, and the experience of growing up with my sister have all combined and impacted one another.
My sister is fortunate to be employed and live fairly independently in Chicago, but the process of getting her there was not easy for anyone involved. The universal struggle of 20-somethings applying and finding themselves in the world is not unknown to my sister, or to those who are intellectually, developmentally, and socially similar to her. My parents found the resources available for addressing this stage in her life to be quite weak or nearly invisible, as this age is less publicly acknowledged or discussed in the raising of a child with intellectual and developmental disabilities; so many existing organizations focus on helping younger kids socially as they waft through middle school, finding them “buddies” for playtime, or raising awareness about the existence of autism. How many mainstreamed- household name organizations facilitate experiences for post-high school or university young adults on the spectrum?
In the summer of 2013, my parents responded to this gap by taking it into their own hands: they are in the process of creating a foundation that addresses the void in post-secondary education and vocational resources available for young adults like my sister. My sister has a knack for painting, and, in her business-executive hat, my mom saw this talent as a potential source to create change, which is where the vision for a family foundation originated. Using her designs to create and sell textiles to benefit the foundation, its goal is to provide more expansive job training and employment services for young adults experiencing similar difficulties to those of my sister, preparing them to find successful employment and independence.
In terms of my own Judaism, I recently explored all the issues at hand within a Jewish context. After my summer with the Bronfman Youth Fellowships in Israel, I spent time my senior year fulfilling a core part of the Fellowship experience: the ma’aseh project. After a summer of intense exposure to new things, the ma’aseh project invites Fellows to develop a program that will impact some aspect of their communities begging for action. Through the guidance and resources offered, my project was to research and compile a database that organizes post-secondary school opportunities for young adults with intellectual or developmental disabilities. We hope to provide this resource as a service within the goals of the foundation itself.
When discussing preliminary aspects of getting this foundation off the ground, we’ve always considered the Jewish community to be an indispensable resource, particularly in creating a context of identity and continuity. Moreover, my participation in the foundation has been facilitated by a Jewish experience integral to all of my identities, Jewish and not. As members of a religious system that specifically values education and tikkun olam, my family feels compelled to react to our experience and to provide resources for others who might also stumble along the same path.
This is an ever-evolving story that will continue to impact everyone involved in different ways. Consequently, it is also a story I cannot possess as strictly my own, or as my sister’s, or as my family’s. We, like the broader Jewish people, are not defined by such “hardships” and “quirks” that are deemed go-to college admissions essay topics. My story is that I am Jewish, and that my family, like so many others, has used community and shared identity to embrace
Lili Brown is a student at Barnard College in a dual degree program with the Jewish Theological Seminary.
