Fair is not always equal: Adapting bar, bat mitzvahs to developmental challenges - review

Blas, an experienced bar and bat mitzvah teacher, has worked with both students comfortable with Hebrew texts, for whom preparing between 50 and 154 for their Torah reading “was reasonable and fair.” He has also worked with students who can learn only one to three lines.

The expectation for each student, he says, “was totally fair and not at all equal.”

Below are several extracts from the book.

Equity and equality come into play when determining an appropriate amount of material to publicly recite and when selecting a day for the service. While the norm in Orthodox and Conservative synagogues may be to chant the Torah portion and Haftarah (readings from the Prophets), some students benefit from a non-Shabbat b’nai mitzvah, where less Torah is read, or from events that feature accommodations such as microphones, augmented communication devices, shorter services, and fewer guests.

When my bat mitzvah came around and suddenly my blindness seemed like an obstacle to entering the Jewish adult world, I was surprised. I didn’t like to think that an identity that had accompanied me through my childhood was now becoming a burden or an impediment.

Therefore, I decided that it wouldn’t be. I worked together with my mom and dad, as well as a supremely kind cast of family, friends, and clergy, to create a bat mitzvah that exemplified the truth that I already knew: blindness and Judaism can build on each other to create something beautiful.

I was lucky to already know Hebrew Braille and to be able to read and understand Hebrew. However, to read from the Torah, I needed to learn the trope (biblical cantillation). This was a challenge. Practically speaking, until my bat mitzvah, there was no Braille trope system. This meant that if I wanted to chant the portion in the traditional tune, I would have to learn the melody only by ear. It would be difficult to prepare my entire portion using this method.

Also, I wanted to know the trope so I could prepare Torah readings independently in the future. To solve this issue, Danny Sadinoff, a family friend and coding genius, created a beta version of a software program that converted tropes into Braille symbols.

At my bat mitzvah, I led the morning prayer using my braille siddur (prayer book). I then led the Torah service using routes to and from the Ark that I had practiced before. I read my Torah portion and Haftarah (reading from the Prophets) from braille texts. I didn’t use a yad (Torah pointer) since I needed my fingers to read the text.

A good friend instead painted a henna yad on my hand to show that my hands were, in fact, reading the Torah text. At the end of the service, I gave a dvar Torah to the congregation about the Torah portion and the power of empowering others.

How we all love hearing the stories about the b’nai mitzvah of children with disabilities. They almost always all end the same way: “There wasn’t a dry eye in the house!” These stories touch us powerfully because they help us recognize the possibilities when a child is appropriately supported. To stand before the Torah and the congregation, coming to Jewish adulthood in the tradition of our people, is more than cause for celebration.

It is a moment when once-uncertain hopes and dreams are fulfilled. It is a declaration made by a young person taking their place among the Jewish people, connected to the chain that began with Moses, and lovingly passed down from generation to generation.

These are the key values I have learned, from years in the field, about best practices for b’nai mitzvah for children with disabilities:

B’nai mitzvah is as important to families of children with disabilities as it is to families of their nondisabled peers. Clergy and educators need to listen to parents’ hopes and dreams for their child.

Parents are partners in the process. Parents know best about their child’s strengths, learning style, what works for them, and even their worries. These all contribute to making the learning experience appropriate for the child.

Don’t assume that a child with a disability is unable to do what their nondisabled peers do. Set aside preconceived expectations to understand and observe how each child learns and progresses. No one can predict what they will accomplish until they are given the opportunity.

Listen to the b’nai mitzvah child. Get to know them. Suspend “This is how we do it” thinking and tailor training to the child’s interests and way of learning.

To the greatest extent possible, children with disabilities should be included with their nondisabled peers in b’nai mitzvah preparation group activities, providing support based on the child’s needs. They are part of a community of their peers who may have been together throughout religious school. For a young teen, this promotes well-being and a sense of belonging.

Have high, not low, expectations. As the child progresses, expectations can be adjusted. Set the bar at the right height for each person – never too high or too low.

Presume competence. By adopting an open approach to discovering the way to teach a child according to their needs, they will succeed.

Ensure that each child is matched with a tutor or teacher who is flexible and supportive, works well with diverse learning styles, and can communicate effectively and empathetically with the child and their family.

Let Torah be your guide. Torah teaches us that each human being is created in the image of the Holy One. Moses and so many biblical people have what today would be considered a disability. Having a disability is not an obstacle to fulfilling God’s purpose.

The first lines in the Torah, introducing Creation, are the beginning of my bar mitzvah reading from the Torah. I am an autistic person who, at age two and a half, was recommended for institutionalization. Yet I am now married, work as a professor of special education, travel internationally giving speeches on autism, and regularly pray at synagogues run by Chabad, a hassidic sect that is open and welcoming to all Jews.

The process of preparing for my bar mitzvah was pretty stressful. My dad found a rabbinical student who had experience working with kids with autism, but I was still scared and overwhelmed by the whole idea. I couldn’t imagine having to sing the Torah blessings in front of people, even though I had sung them to myself hundreds, if not thousands, of times since I was a toddler. Once we started, my mom realized what was happening, and we switched gears.

Whether you are a parent, teacher, or clergy member, presume competence. Using the arts should not be limited to just cutting and pasting Hebrew letters on a dreidel, reading Bible stories, or teaching children how to dance the hora. We can use every aspect of creativity – music, movement, storytelling, singing, visual art, video – to foster self-expression in whatever form, creating engagement and spiritual meaning – traditional, individual, and communal.

To transition from the outside world to the b’nai mitzvah tutoring class, I often start a session with an art project based on their parashah. For example, if we are discussing Deuteronomy 6:4-9, “Shema Yisrael, Ado-nai Elokeinu, Ado-nai Ehad (Hear, O Israel! The Lord is our God, the Lord is One), we might create a mezuzah, a small box to attach to the doors of Jewish homes that contains parchment with the words of the Shema.

We have used glass test tubes or clay containers, decorated them, purchased an authentic scroll, and later placed it on our door in the company of our family members.

I may teach the Shema to the students through American Sign Language, or drum the rhythm of the prayer. We discuss what the prayer means to them. We may also add meditation to consider what God may be saying directly to them.