June 4, 2012
On May 5th, the Gateways community came together to celebrate the Bat Mitzvah of a very special student: Rachel Murphy. Rachel is a cheerful girl whose enormous love of music causes her to light up at the first note of a familiar tune. Rachel has brain damage from a stroke after heart surgery when she was a 2-year-old. She can’t speak, she can’t walk and she has uncontrolled seizures. Yet, since first enrolling Rachel in 2005, her parents have driven 2 hours round trip to bring her to Gateways’ Sunday Program each week so that she could receive a Jewish education. And in spite of her limitations, and with the support of a Gateways special educator, Rachel has learned. On the day of Rachel’s Bat Mitzvah, her dad, Frank, addressed the large gathering of family and friends at their home synagogue, Temple Beth Torah in Holliston, and these were his words:
Elisa and I wanted to take a moment to say a very big and very heartfelt thank you to all of you for joining us on this very special day. In the next few minutes we’ll try to express in words how moving and how powerful it is just to be here on this very unique day.
As many of you know, especially if you were with us during those early days in the cardiac ICU in Children’s 13 years ago, we never really knew for sure if we would be standing here today. In the time that’s passed, she’s grown up quickly. The pictures on the walls of her room have changed from butterflies to…Justin Bieber. Oy vey!! In those 13 years as we’ve faced struggles and obstacles head on, Elisa and I have often been asked: How do you do it?
The answer is simple: it can be found in this room. Look to your left, look to your right. This community of family, friends, care givers, volunteers, school and religious educators have all played some role in helping us not just to survive some medical crisis, but to overcome life’s obstacles, and to grow and thrive in a way that ultimately brings us here today. You’ve all done some sort of good deed in our lives and we thank you for that. There’s a word for that- doing good deeds- it’s called mitzvah and it’s a perfect theme for today.
That’s because today isn’t about putting Rachel on display just to have her push buttons on a screen. Today is about resilience, about accepting life’s limitations and making the best of them anyway, about broadening the view and the value of a Bat Mitzvah.
Think about these words: help, learn, grow. Those are great ways to describe today and the importance of helping and of doing good—doing mitzvot.
But please remember that helping and teaching isn’t just a one-directional activity with Rachel. While each of us has been part of her education, she has, in turn, taught many life lessons. Life skills, they call them at school. Here are three examples:
1. Be present in the moment. Stop and think, how difficult was it to shut off your phone today? Doing that helps us be present, to be in this special moment before God. Have you ever known Rachel to worry about tomorrow, or next week, or be sad about some event in the past? No. She completely lives in the moment. No filter, no hidden agenda.
When you say hello, she gives you a hug, a real one. They’re great. That ability to always be present and to live in the moment is very powerful. It’s a great lesson.
2. Next, be flexible and adapt. There have been many adaptations behind the scenes to put this event together today. Her Hebrew School team from Gateways in Newton. Arlene, Nancy, Rebecca, Yarden, this team has worked with us for years to adapt Jewish education and make it accessible to children with all types of disabilities. As the non-Jewish parent in the house, I’ve been able to join Rachel on her educational journey so that I also understand the holidays, the torah and the culture. They’ve helped us adapt as a family so we can pray and celebrate together.
Another adaptation they’ve helped with today is on her Dyanvox device. They’ve helped build programs on it that make the Torah accessible for Rachel. When she sees an image from her prayer book on screen, of a kid covering their eyes, she knows that’s the symbol for the Shema, one of the holiest of prayers. So today is not just pushing buttons, she’s independently calling us to prayer, and leading the congregation.
3. The last lesson is to be inclusive: The ultimate symbol of inclusion today is the tallis itself. It has hundreds of fringes, or tzitzit, around the edge. Each one serves as a reminder of God’s many commandments. In our society, when faced with tragedy and disability, kids like my kid can become much like the tzitzit on a tallis, fringes around the edges of our society. By being here today, singing with us, praying with us, each of you has played some inclusive role in our life. So that, in the same way as the tallis itself has fringes and fabric woven together, by celebrating with us today, though we come from different backgrounds and have different abilities, we’re all woven together in celebration.
So on Rachel’s behalf, thank you for coming here today, for doing good deeds and mitzvot, for being part of this inclusive moment, and for helping us most to grow. Hopefully along the way we’ve helped you in return.
Prayers with visual supports were created to help make prayers simple, accessible, and understandable for students with a variety of disabilities. In these files, each Hebrew phrase is illustrated by a simple picture symbol (we use Mayer-Johnson Boardmaker symbols). Students with disabilities can follow along with each prayer and learn to understand its meaning using symbol prayers.
These files were imported onto Rachel's Dynavox device, and synced with audio files of someone singing the corresponding blessing or prayer. Over the years, Rachel learned to recognize the images that represent the various blessings and prayers, and was able to lead others in prayer by pressing the images, activating the voice output. »»»
This Bat Mitzvah vocabulary sheet features short and clear explanations of some Bat Mitzvah basics: mitzvah, kippah/yamulka, tallit, bimah, ark, and many more. Rachel comes from an interfaith family, and this sheet was distributed with the program book on the day of her Bat Mitzvah to help everyone in the audience feel comfortable and participate. »»»
Producing a clear and simple service guide like this one, and including it in the program at a child's bar or bat mitzvah, can make the service inclusive of everyone in attendance. Whether intended for the other children in the congregation or for non-Jewish members of an interfaith family, this guide can help everyone follow along and participate in the service. This guide includes a visual representation of the order of the service, and explanation of each part of the service, and an explanation of the Torah's clothes and ornaments. »»»
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