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Outreach Journal: Praying with Lior

Published on July 18, 2005

A “disabled” child’s prayers inspired a film; his impact on his community inspired a campaign for social justice. Praying with Lior introduces Lior Liebling, a thirteen-year-old boy with Down syndrome, who is not only a fully-integrated member of his religious community, but is celebrated as a “spiritual genius” for his full-bodied praying.

Filmmaker Ilana Trachtman met Lior at a Rosh Hashanah service where his praying inspired her.

It was Lior’s open-hearted praying that first captivated documentary filmmaker Ilana Trachtman (Lifetime’s Our Heroes, Ourselves, Showtime’s What’s Going On: Child Poverty in America, HBO Family’s My Favorite Book). As Trachtman struggled to focus during a Rosh Hashanah service at Elat Chayyim, a multi-denominational Jewish retreat center in the Catskills, she was mesmerized by the soulfully attentive off-key voice that came from behind her. When she saw the source, a boy with Down syndrome, she was shocked. Lior’s praying shattered her expectations of what people with disabilities can do. “He amazed me. He could do something that I can’t do—pray with real concentration in Hebrew and in English. So I stalked him because of my own spiritual curiosity.” When Trachtman heard Lior was going to have a Bar Mitzvah, she thought somebody should tell his story on film and shortly after, she decided to be that person.

Anxiously, Trachtman approached Lior’s parents, who greeted her with open arms. Knowing only that Lior could pray like no one she’d ever met, Trachtman started filming. Getting to know him proved continually astounding. “I didn’t know who he was. I didn’t know that since toddler age he’s affected a following of people the same way he affected me.” Trachtman also discovered that Lior appeared as compelling and appealing on film as he did to his community.

Audiences may debate whether this photogenic young person’s “star quality” sets him apart from other people with disabilities. Some may argue that Lior’s integration is dependent upon his recognition by and attractiveness to non-disabled society. Others may think his charisma is connected to his disability. The film certainly brings to the foreground issues of the aesthetics of disability, and non-disability, in film.

The Film

As Trachtman’s knowledge about inclusion developed, so did the film’s storytelling style. Trachtman explained, “I realized that it wasn’t so much Lior’s story as it was everyone else’s story. Praying with Lior and feeling connected to his life is very important for these people. This is vastly different than most notions of inclusion, because Lior isn’t a charitable burden. He’s contributing, he’s a gift. At the same time, he’s also just a regular kid.” It became clear to Trachtman after she entered Lior’s community that he would not be who he is without them, nor would they be who they are without him. She decided that along with Lior, the people from Lior’s family and extended community should tell Lior’s story. There are scenes narrated by his father, neighbors, stepmother, rabbi, non-religious siblings, Orthodox principal and barber. Lior’s community’s intense feelings for him are connected to their self-reflections, offering viewers immediate insight into each person’s struggles, dreams and beliefs.

A central figure in this community is Lior’s biological mother, Rabbi Devora Bartnoff, who died of breast cancer seven years ago, when Lior was six. For Trachtman, Bartnoff’s writings and memory infuse this project with significant purpose. “When I was still deciding about making this film, I read an article that Lior’s mother wrote in 1997. She talks about Lior’s young and unusual spirituality, and she wonders what his Bar Mitzvah will be like. She died months after writing that. Reading it felt like a charge. Her spirit certainly nurtures Lior, and along with the rest of the family, informs the film. We are using a lot of home movies of her to help tell the story.”

Lior Liebling, a thirteen-year-old boy with Down syndrome, is not only a fully-integrated member of his religious community, but is celebrated as a “spiritual genius.”

Fundraising

While Trachtman has years of documentary filmmaking experience, she had never made an independent film before, and fundraising was a daunting challenge. Moreover, Lior’s Bar Mitzvah took place soon after Trachtman met Lior, so she was forced to research, fundraise, and shoot simultaneously. Without any funding, Trachtman began shooting in December 2004. Two months later she held a benefit, which brought in some initial money. A seed grant from the Hartley Film Foundation allowed her to edit a trailer. Since then, funding has trickled in slowly from various sources including the Shefa Fund, Lucius and Eva Eastman Fund, Roth Family Foundation, William Jelin Foundation, Estelle Friedman Gervis Family Foundation, and over 100 private individual donors. Steven Weinstock (True Entertainment) donated the short-term use of an edit suite, which got the rough cut off to a start.

At this time, Trachtman has raised all the money for production costs and continues to seek funding to complete editing. She expects that the rough cut will be completed in the late fall of 2005, and she hopes for a national television broadcast to give the film the largest possible audience.

Outreach

As funding for Praying with Lior emerged during the process of making the film, so has the film’s outreach campaign. Once the film became focused on Lior’s Bar Mitzvah, Trachtman wanted to know how other families with disabilities performed religious rituals such as Bar Mitzvahs. She met many people with disabilities and their parents. Some told her stories of stepping away from religious communities because of their exclusion, while others told her of the battles they waged to make room for their disabled child.

Trachtman also solicited many advisors, including Bill Gaventa of the Elizabeth M. Boggs Center on Developmental Disabilities, Ginny Thornburgh of the National Organization on Disability‘s Religion Department and Martha Beck, author of “Expecting Adam.” Trachtman learned that over fifty-four million Americans are disabled, while less than half the houses of worship are accessible to the disabled. While Trachtman found religious organizations for people with disabilities for particular denominations (such as Orthodox Jews or Baptist Christians), she did not find any central, multi-denominational/multi-religious organization that provides practical hands-on advice for adaptation of religious ritual to individuals with special needs.

From these conversations, Trachtman saw the need for a detailed, comprehensive and ecumenical website for people with disabilities to write about their experiences in religious settings and for people to receive support and ideas about integration in religious contexts. Trachtman explained that “Since there is no central clearinghouse (and this is true for churches, synagogues and mosques), every time there is a special need, each willing faith group often has to reinvent the wheel in isolation.” Questions people may discuss on this website include: How can someone with Cerebral Palsy who speaks with a technical device give a Bar Mitzvah speech, read from the Torah or sing from a hymnal? How access-friendly and relevant are religious educational programs for people with disabilities, and what can be done to make them more accessible?

Trachtman envisions a website for the film that will serve as a resource for individuals with disabilities seeking inclusion in religious communities.

Users will be able to post questions, photographs and information about their adaptations of religious ceremonies, share advice and connect to people confronting similar challenges around the world. For example, a rabbi in Minneapolis will be able to explain to a rabbi in Memphis how he officiated a wedding for a wheelchair-bound couple. A mother in Santa Barbara will be able to show a mother in Switzerland a video clip of her daughter’s sign-language confirmation. Via the website, audience members will be able to respond to the film, arrange for screenings in their communities and link to local chapters of special needs organizations.

Trachtman hopes that in the disabled community people will become more aware of possibilities for inclusion; many parents she has spoken to have not yet dared consider whether their child could become integrated into their religious communities.

Additionally, through the website, families and individuals with disabilities who want to challenge religious communal practices as inherently exclusive will be able to post their visions for a community that appreciates people with disabilities on their own terms. The idea of “Nothing about us without us,” that Disability Studies popularized in academic and disabled communities, can generate momentum for systematic social change that will appear on the website in the form of articles, personal stories and an extensive resource bibliography with books, films and performances.

The need for another outreach strategy became apparent after Trachtman spoke to many rabbis who had never done a service with someone with a disability. She realized that there needs to be disability education workshops in seminaries and ordaining institutions. Many seminaries do not address issues of disability except in the context of “charity for the unfortunate.” Trachtman sees a need to get information about disability on its own terms to those who set the tone in religious institutions. Workshops in ordaining institutions could develop into classes as part of the curriculum, taught by people with disabilities, activists, community organizers and scholars in disability studies.

During the filmmaking process, Trachtman partnered with disability and faith organizations that desire tools to teach and implement inclusion. These organizations have also served as production advisors, committing to publicizing and organizing nationwide educational events and focus group screenings as the film nears completion. Partners include The National Organization on Disability, The National Down Syndrome Society, The Council for Jews with Special Needs, The Board of Jewish Education of New York, New Jersey Coalition for Inclusive Ministries, The Auburn Center on Media and Religion and New York University Center for Media, Culture, and History.

Lior is lifted on a chair by his friends and family at his Bar Mitzvah party.

Following the broadcast, an outreach campaign will include screenings for faith communities and disability groups, as well as festival screenings tied to inclusion programs in festival cities. Also, Trachtman will publish a downloadable study guide written by scholars, teachers, and members of different religions on disability. The study guide will include various historical and religious perspectives on disability in the form of articles, film clips and discussion questions.
A story of the profound integration of a child with Down syndrome, Praying with Lior launches an ambitious social activism campaign for integration of people with disabilities in religious communities. Audiences may wonder if Lior’s contributions and sense of belonging in the community make him a role model for families of people with disabilities, or if he is an exception among disabled people in that his specific talents, along with family and community resources, allow him opportunities unavailable to those with disabilities who are less socially attractive and well-supported. According to Trachtman, “This is not intended to speak for everyone with special needs. You can’t make a documentary in general, you can only tell a specific story.

The striking message of this film is that the inclusion of a young person with disabilities demonstrates that having a community that’s whole is richer than having a community that’s not.� Trachtman argues that people with disabilities should at least have the choice to step through the doors of religious settings so that their unique voices of difference can be heard.