For kids with disabilities, time to move from inclusion to normalcy

Just the other day, I overheard someone saying that they had a wonderful interaction with the “Down syndrome employee” at their local cafe.

Though it happened to have been a sweet story, I cringed. It also got me thinking about the limitations of our campaigns promoting inclusion in the classroom, at work and in other areas of life. Though we have definitely come a long way, it’s clear there is still much to accomplish if an individual can still be defined as someone with Down syndrome, if it’s still something we see.

Unlike other health-related awareness months, Down Syndrome Awareness Month (October) is less about personal health and more about societal wellness. It’s a call to action to celebrate the accomplishments and abilities of individuals with special needs and promote full inclusion for all. But why do we continually have to try so hard to reach this goal? It may be because the goal itself isn’t ambitious enough.

It has been 40 years since the passage of the Individuals with Disabilities Education Act. Children with disabilities across the United States are today being educated in “least restrictive environments,” as the law calls for – namely, the general education classrooms in their neighborhood schools. After four decades, the numerous benefits of this kind of inclusion have been well documented, both for children with disabilities and those without.

Inclusion has exposed children with disabilities to socially acceptable behaviors they would otherwise not experience in a separate class. Through increased social interactions with peers without disabilities, they have developed relationships and peer role models and found encouragement.

One such young woman is Madeline Stuart, an Australian with Down syndrome who graced the runway as a model during this year’s New York Fashion Week. Stuart’s mother credits inclusion for her daughter’s rise. As she put it, “This was all possible because the world was ready.”

During my tenure with ALEH, Israel’s largest network of residential facilities for children with severe intellectual and motor disabilities, I have witnessed the successful implementation of inclusion programming and its astounding effects on our children’s growth and development. But while inclusion has made great strides in recent years, and continues to change lives inside and outside the classroom, I can’t help but wonder if it has reached its limits and if we should be expecting more from ourselves as a society.

We may we have set the bar too low. Perhaps it is now time to push harder, to trade inclusion campaigns for the promotion of normalcy.

What does normal look like?

Normal means a sweet anecdote about an angelic cafe employee doesn’t need to mention his genetic disorder. Normal would entail a fierce runway catwalk by a young blond model followed by interviews focusing on who she’s wearing — rather than her bravery for participating “against all odds.” Normal is allowing ourselves to see people, rather than causes or movements or wars to be won.

Where inclusion encouraged us to pull individuals with disabilities out of the shadows and see them as individuals deserving of the same services, resources and experiences, a push for normalcy encourages us to live in a world where inclusion is second nature. In essence, normalcy is daring to aim ever higher.

We will never soar if we become too comfortable in any nest, and I humbly submit that it’s time to look beyond our bastion of inclusion, because even that has become too comfortable. It’s time to spread our wings and embrace normalcy so that the next generation won’t even understand why the promotion of inclusion was ever necessary.

(Rachel Fishheimer is the director of education at the Jerusalem facility of ALEH, Israel’s largest network of residential facilities for children with severe intellectual and motor disabilities.)

With gratitude from Jerusalem

I am in Jerusalem gazing out at the walls of the Old City and the words floating through my mind are ones spoken in these streets more two millennia ago. They are words I have heard and repeated many times as a rabbi, a teacher, a Jew, but they take on a whole new meaning for me today: Im ein ani li, mi li? Uchi-she-ani l’atzmi, mah ani? V’im lo achashav, ey-ma-tie?” They are pronouncements attributed to the great sage, Rabbi Hillel. The man knew what he was talking about. For 2000 years later the Bat Mitzvah of my youngest child, my final b’nei mitzvah as a father, has imbued those words with parental pride and unbridled gratitude. To our families, of course, but also the Jewish community of Los Angeles.

We began this life-affirming journey a month ago when Shira was called to the Torah at Sinai Temple. As a student at Sinai Akiba since pre-school, she has been surrounded by Yiddishkeit, coming to understand our people’s history, both its challenges and its triumphs. She was trained for a number of months by a caring Cantor Keith Miller in the ways of trope and chanting, and guided by our amazing Rabbi Nicole Guzick, a young and passionate teacher who serves as a role model. Speaking of which, Shira has been part of a pilot program at Sinai called, “It’s A Girl Thing.” Each month around Rosh Chodesh, a handful of girls led by Danielle Salem-Kassin explore their Judaism as the pioneer program seeks to nurture confident Jewish women. What a michayah!

Shira had been taught for for some time to embrace the self-affirmation of Im Eyn ani-li, mi li? If I am not for myself, who will be? In our home, in her involvement in musical theatre which is her passion, and in her synagogue and school, she had been raised to know what Rabbi Heschel meant when he said, To be is to stand for. She had been learning what to stand for and it was the Los Angeles community and Sinai and her family that had been helping her gain this knowledge. But, as with each B’nei Mitzvah, we encourage boys and girls to embrace the second part of Hillel’s word, If I am only for myself, what am I? Here the mitzvah projects step in. Shira had decided some time ago, along with three other special theatre friends, to form a group called BROADWAY BOUND. They would use their passion and talent for musical theatre to sing and perform for members of our community who could benefit from their outreach: convalescent homes, childrens’ hospitals, and those in hospice care. Just before her bat mitzvah in December the girls sang for one such residential home where the oldest living California military female veteran, a Jewish woman, Bea Cohen, 103, resides. She saluted them for their gift of music, theatre, and, yes, for touching her with their youth. Shira’s second mitzvah project was to be found in an Israeli children’s residential facility for those with disabilities and rare chromosomal disorders.

ALEH is an organization in Israel that cares for kids 24/7, 365 days a year, children whose families cannot meet their needs. Shira was twinned with a young girl, Efrat, whose rare chromosomal disorder rendered her unable to speak or function as most children. Efrat, 12 nevertheless enjoys music and dance, attends classes, and loves the feel of water on her skin. We decided we would travel to Israel to hold a second ceremony with Efrat at ALEH. Through Shira’s website, she has raised awareness of ALEH and the work they do for hundreds of children in Israel, including Arab children, who have special and ever-pressing needs. She has been raising funds and, at her children’s party in LA following her ceremony, chose to have her friends use part of their celebratory time to paint tiny ceramic butterflies. Shira would bring these colorful offerings to Israel to help fashion an art work for the children of ALEH. Through the graciousness of Fred Anderson of Color Me Mine in Beverly Hills, she was able to take these painted butterflies fashioned by the hands of Jewish children in LA, fire them in the kiln, and transform a little piece of Israel.

Arriving in Jerusalem 10 days after the event at Sinai Temple, we also wanted to connect our daughter to the spiritual life of Israel. Gathering family and friends, we held a service at Robinson’s Arch where men and women are able to pray together. The spot is located geographically to the right of the Kotel, within the archeological garden where celebrations are coordinated by the Masorti movement, the Conservative movement in Israel. There we celebrated before ancient walls and the fallen boulders once left by Rome assuming the end of the Jewish people in this country. And here, a Jewish California girl became the latest to lift her voice in prayer, the words of Torah echoing off the stones of her people’s rich past, an affirmation that rang out from the city that holds within its boundaries the Holocaust collective consciousness of Yad Vashem, the modern political reality of the Knesset, and the remnants of David’s once vibrant kingdom.

My face was wet with tears, as I recalled standing here 40 years earlier as a rabbinic student when the Yom Kippur War broke out. Here I came to pray for the life of Israel. Here I had stood and sang as war ebbed and flowed. Here I had been handed an Uzi and told to stand guard at a Jerusalem mental hospital as all the Israeli guards had rushed to war. (Shtuyot, “Don’t be ridiculous,” they had responded back then when I worried about the gun going off. Do you think we would give an American kid bullets? It was merely a prop to try to maintain order as all hell broke loose around us in a country under attack). Here I was bringing my youngest child back to celebrate this way of life we have kept alive through war and struggle, through study and song.

Im lo achshav, ey-ma-tie? If not now, when? We had to come. We had to connect her to Israel just as we had to help her help the children of ALEH. In Tzfat, Shira painted a canvas of a tree filled with brances reaching out with a plethora of leaves. At ALEH (which means “Leaf” and is an acronym for reaching out to special kids), she painstakingly attached each of the 100 butterflies to the canvas, fashioning a world of color and movement and light that now hangs in the school wing of ALEH.

This entire Bat Mitzvah journey was all made possible by loving grandparents, by incredible family and dear friends. But also by a larger community that often hears about everything that is going wrong and far too briefly about the precious blessings of their work. On the eve of our return to the states, as the funeral plans for Arik Sharon play out in the streets here in Jerusalem, as religious and secular Jews crisscross one another in Mahane Yehuda, as Bonnie and Shira and I make our way one last time to the Kotel, we pause at Robinson’s Arch where we celebrated her Israeli simcha. Shira lifts her eyes to the remnants of the historic arch that once served as part of a magnificent stairway leading Jews to the Temple Mount. There she identifies words etched in stone 2000 years earlier. Lebeith Hatekiah Lehach…” This inscription points to the spot where the shofar once sounded calling the Jewish People together. Two millennia after the jewish nation was left in ruin, less than 75 years after the Nazi attempt to silence the Jewish song, Shira’s voice becomes the modern shofar, ringing out and affirming to all of us that the Jewish journey goes on.

Im lo achshav, ey-mah-tie? If one can’t express gratitude at such a moment, then when?

To Rabbi David Wolpe and his moving way of connecting Torah to the world we live in, words that Shira has listened to for years.

To Rabbi Nicole Guzik, whose passionate and personal leadership has touched our lives and the heart of our daughter.

To Craig Taubman, and Dale Schatz, whose gift of song resonated throughout our bat mitzvah simcha, and whose music weaves its spell around a Jewish family’s heart.

To the staffs of Sinai Temple and Sinai Akiba for all they do to honor our past and nurture the Jewish present and future.

To the Day Schools and Hebrew Schools of Los Angeles and the teachers and administrators who help teach our children and open their minds and hearts to Torah and vibrant Jewish living.

To the leaders and organizations of the Jewish community of LA who wrestle with the meaning of Judaism and the needs of our community members.

And yes, to the Jewish Journal, which seeks to connect our community and elucidate the issues that matter.

On behalf of our daughter, and all of our sons and daughters, we owe you all a debt of gratitude. On the eve of Tu B’shavat, from the streets of Jerusalem, we raise our voice in prayer and thanksgiving. And, as with the canvas of a tree and a hundred butterflies made for children in Israel fashioned by children from Los Angeles, may we lift our communal hands and voices and, along with Shira, begin to plant anew.

Shira with her completed art work of 100 butterflies painted by LA friends as a Bat Mitzvah gift for the children of ALEH, the Israeli residence for kids with special needs.

Jan is the Rabbi-in-Residence of the Abraham Joshua Heschel Day School and a best-selling novelist. For more information about ALEH, please log onto