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First Person – Like Any Other Child

By his size and handsome impression, our son, Max, appears to be like any other boy his age, however when you meet him in his wheelchair, you quickly learn that he is severely disabled, both cognitively and physically. He\'s unable to talk, use a device to communicate, propel himself or use his hands. You realize that he\'s dependent on others in every aspect of his life. Yet, that didn\'t stop our family and friends from all over California, our community and Max himself from celebrating his becoming a bar mitzvah.
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June 1, 2006

By his size and handsome impression, our son, Max, appears to be like any other boy his age, however when you meet him in his wheelchair, you quickly learn that he is severely disabled, both cognitively and physically. He’s unable to talk, use a device to communicate, propel himself or use his hands. You realize that he’s dependent on others in every aspect of his life. Yet, that didn’t stop our family and friends from all over California, our community and Max himself from celebrating his becoming a bar mitzvah. In January, 160 people gathered for a Havdalah service at Congregation Ner Tamid in Rancho Palos Verdes to recognize our son’s turning 13 and to share in the joy and inspiration he has stimulated within each of us.

As my wife, our 9-year-old daughter and I proudly joined Max to sit on the bimah, Rabbi Isaac Jeret and Cantor Sam Radwine conducted a beautiful service filled with tradition. Music, an aliyah, prayers and sensitive words recognized the significance of the evening. With the intent of highlighting the joy of the occasion rather than focusing on the uniqueness of the situation and Max’s disabilities, the service was purposely kept simple and accented with lots of singing. On the bimah, we sat in a semicircle just one step above the congregation. With Max seated between my wife and me, and, with our daughter, the rabbi and the cantor all sitting alongside us; we were so close to family and friends that I felt as if we were at home, in our living room, for a family event. It was a warm, supportive and loving environment that everyone was able to share in, up close and personal. My wife and I, the cantor and the synagogue president each were called for an aliyah. Then, as Max is fortunate to have a 92-year-old great-grandmother, four grandparents, six aunts and uncles and seven first cousins, each was called upon to participate in the Havdalah ceremony. Max’s grandparents held the candle, his cousins held the Kiddush cup and his sister and great-grandmother held the spice box. The support of our families was overwhelming.

Appreciating the sensory stimulation, Max laughed and smiled throughout the 45-minute service. Building on the moment, I shared an interpretation of the relevant Torah portion to speak of how our family has matured from having Max in our lives and experiencing his disabilities. Max has taught us, both figuratively and literally, the value of being kind, doing mitzvot, not taking things for granted, liking people for who they are and recognizing that there is purpose and meaning for everyone in what we do and in everything that happens. I acknowledged that through Max’s disability, he has demonstrated a kind of strength we all need to make the best of situations, to welcome and invite diversity and to appreciate how people, even when they cannot communicate in the ways to which we are accustomed, can enjoy life in different ways.

For me, Max’s bar mitzvah was a very emotional event. It was not just the occasion of his becoming a bar mitzvah that was momentous. It was the feeling and recognition that our son, who doesn’t understand and is not easily included in regular activities and holidays, was being recognized and confirmed. For several years, I had found myself becoming very emotional during bar and bat mitzvahs as the 13-year-old would read from the Torah and recite his or her speech. I couldn’t imagine how we could enable Max to have the opportunity to experience such a crucial life-cycle event. However, about nine months ago (prior to Max’s bar mitzvah), my wife and I had a conversation with Cantor Radwine. We talked about a simple, creative and musical service to recognize Max turning 13. Then, following a discussion with Rabbi Jeret, we decided to have a bar mitzvah; the date was set for a Saturday night when we could all share in the experience of Havdalah. So, there we were, with Max, my wife and daughter on the bimah and I could not have been happier.

As with any bar mitzvah, the service and reception is tailored to child’s abilities and interests. The reception, in the motif of a carnival atmosphere, was dinner with live background music. The theme for the evening, inspired by a Yiddish proverb, was “Each child carries his own blessing into the world.”

“Inclusion” for the disabled has many different meanings. In the broadest sense and as demonstrated in our son’s bar mitzvah, it means to open doors and provide experiences and opportunities for people of all abilities. The value of inclusion is in the pleasure we know the recipient receives. Equally as important, however, is the value that the community experiences from the event — particularly the support we offer one another.

Max’s bar mitzvah celebrated our rich Jewish traditions; recognized Max within the community; reflected on the significance of life, family and friends; and illustrated how, thinking outside the box, we can celebrate life-cycle events with people of all abilities.

Anton Dahlerbruch is deputy city manager of the city of Beverly Hills.

 

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