Inclusion in Israel: A Birthright Experience
Shelly Christensen, MA, is president of Inclusion Innovations LLC, a consulting firm that works with faith communities to support inclusive practices. She is co-chair of the URJ Committee for Access to Lifelong Jewish Education and author of “Jewish Community Guide to Inclusion of People with Disabilities.” You can reach her at email@example.com.
This post is the second in a weeklong series about Jewish Disability Awareness Month.
I have a note hanging by my desk that says “Work is love made visible.” It’s a phrase that resonates with the work I do, serving Jews with disabilities as an advocateon their Jewish journeys. If you are curious to know what those “Jewish journeys “are for someone who has a disability, look no further than your own life. What is important to you as a Jew may be just as important to the people who have lived on the fringe of Jewish life for so long because of a physical, cognitive, developmental or emotional disability.
Many people I work with and their families have the desire to go to Israel and experience the Jewish homeland for themselves. Often the only thing standing between them and making the trip is having a disability. That is changing for some people, including my own son Jacob, who just returned to the United States following a unique Birthright trip for young adults with Asperger syndrome (AS) offered by Shorashim and KOACH.
Jacob was diagnosed at 15. His quirky outlook on life had a name: Asperger syndrome. AS is characterized by perseverative interests, inability to make small talk, rigid adherence to routine and difficulty with transitions.With the diagnosis came answers and also exposed the very real challenges that Jacob and others with AS encounter as they try to live a life that is “normal” for them.
We have never held pity parties for ourselves or for Jacob. Perhaps we had the “luxury” of not knowing his official diagnosis for so long. My husband and I had expectations for all three of our sons that they would travel the Jewish road of life by attending religious school, celebrating bar mitzvah and confirmation, and maintaining that spark of neshama. Jacob did all of the above. He even demonstrated his great political and advocacy acumen through the RAC’s Bernard and Audre Rapoport L’Taken Social Justice Seminar and again as a panelist for the URJ Summit on Disabilities in 2008.
Jacob was never keen on going to Israel until his brother Zac went on the URJ Birthright Kesher program in summer 2010. When I heard about a Birthright trip through Shorashim for young adults with Asperger syndrome, Jacob surprised us by applying.
He was excited about the trip, in his Jacob way. He handled all of the pre-trip details himself. The Shorashim staff headed by Rose Sharon was exceptional in every way, understanding how the dynamics of Asperger syndrome interacted with the personalities of the participants. Daily schedules and routines were maintained. A daily blog kept us updated and in tears as we heard about trips to many places in Israel. They experienced so much and felt a deep connection to Israel in intellectual and emotional ways. And they made lifelong connections with other young Jews by sharing the experience.
We will always be grateful for Jacob’s Birthright experience and are
excited to have him home to tell us about it–after the stress and
fatigue from his post-Birthright experience wears off.
As I write this, Jacob is stranded at John F. Kennedy airport, the result of a massive snowstorm that disabled much of the Northeast. Remember, people with Asperger syndrome have difficulty with change in routine and unpredictability. As difficult as being stranded is for all passengers, it can be a horrendous nightmare for Jacob and others with disabilities.
The only help for Jacob comes in the form of a flight home. While standing in a taxi line to go to our cousin’s home in Manhattan, he had enough. “Mom I just can’t do this. I’m going back in the terminal,”he said by phone. Giving up the initial routine he had expected while waiting for the flight home was the better choice for him than encountering yet another new and unknown situation. He went back inside the terminal, re-establishing his waiting routine.
Jacob knows his limitations and he knows how to manage them even under these circumstances. He is for the millionth time my teacher whose lessons about living with a disability remind me that each of us has the right to self-determination and to make decisions even when well-meaning people offer good solutions. I wonder how much of Jacob’s decision to walk back into the airport came from being at the sites in Israel where so many people made so many decisions that were difficult throughout the ages. I believe that, like many travelers to Israel, Jake came back more aware of his strengths and abilities. That is what going to Israel gave him.