BOSTON (JTA) — On a recent Sunday, Ayla Watson celebrated her bat mitzvah.
Ayla, who has attention deficit hyperactivity disorder and other behavioral difficulties, ascended the bimah and recited the Torah reading for Rosh Chodesh, the new month. The service culminated a year of thrice-weekly classes or services at Temple Beth Emunah in Brockton, Mass., and one-on-one tutoring. Ayla learned her Torah portion phonetically and listened to a tape again and again.
“She memorized her whole portion, and she did an awesome job,” said Ellen Watson, Ayla’s grandmother and legal guardian.
Now Ayla, who struggled with several tutors, wants to learn to read Hebrew and trope (the Torah and haftarah chants).
In recent years, as physical adaptations like wheelchair access have become more widespread, synagogues have made strides at including people like Ayla — congregants with emotional, behavioral or mental disabilities. And Jewish organizations advocating for people with disabilities have started to focus on teaching religious schools and synagogues to welcome those with nonphysical disabilities into congregational life.
But there is still a way to go. Synagogues often do not know how to deal with individuals whose behavior can be disruptive. Shelly Christensen, author of “Jewish Community Guide to Inclusion of People with Disabilities,” says stigmas remain for mental illnesses such as schizophrenia and anxiety.
Deborah Gettes, co-chair of the Jewish Special Education International Consortium, a network of special education professionals, says conversations are just beginning about the need for synagogues to become inclusive to people with mental or emotional disabilities in services, youth groups and membership.
“It’s not pervasive throughout the synagogue,” Gettes said. “Welcoming them as congregants, being aware of who are the people with special needs, what are the special needs. … People who have special needs don’t want to be a mitzvah project. They want to be included in the workings of the synagogue.”
Temple Beth Emunah, a Conservative synagogue, opened its special needs program 13 years ago. Students receive one-on-one tutoring in Hebrew language, then join the mainstream Hebrew school. All of the students practice leading services together and work toward reading from the Torah.
The key, says educational director Fran Litner, is “acceptance and kindness” by students and staff.
At the Reform Temple Beth-El in Hillsborough, N.J., the religious school has a separate class for students with developmental disabilities, which this year has three students.
Lisa Friedman, its education co-director, says accommodations are made on a case-by-case basis and extend to adults. For instance, a teenage helper came to a high school retreat to shadow a boy with autism and make sure any special needs were taken care of; a blind high school student has a guide; a congregant escorts a developmentally delayed man living in a group home to services and Shabbat dinners.
“When we know there is somebody that needs something different than what we may be offering, we figure out what that is and ensure we can meet these needs,” Friedman said.
Those synagogues, however, may be the exception rather than the rule.
Rina Pianko, a member of the UJA-Federation of New York’s Caring Commission, has three sons. Her youngest, Gideon, is on the autism spectrum.
While living in Connecticut, Pianko switched from a Conservative to an Orthodox synagogue because the Orthodox shul was the only area synagogue that would allow her son to attend Hebrew school and have a bar mitzvah ceremony.
“It wasn’t easy to access the resources of the Jewish community,” Pianko said. Compared with her experience with her older boys, she said, “there was a real difference in the way the Jewish community welcomed us.”
Jewish institutions such as camps and Hebrew schools did not have the tools or resources to help her son, Pianko says.
Now living in New York, Gideon Pianko, 24, attends services geared toward people with disabilities at Congregation Rodeph Shalom, a Reform temple. His interest in musical theater led a synagogue leader to invite him to attend rehearsals for a synagogue performance of "Damn Yankees."
In the past decade, his mother said, “There’s been a sea change in how this is looked at. .. It’s not looked as tzedakah [charity] but as something that’s a right.”
Similarly, Judi Roth left an independent minyan in Newton, Mass., after her son, now 23, was diagnosed with Asperger’s syndrome. The minyan had no rabbi, and most individual congregants did not offer to help. She says some minyan members stopped inviting her over for Shabbat because of the difficulty of dealing with her son.
“I don’t think people understood,” Roth said. “I didn’t feel the people in the synagogue reached out to help me much.”
Roth switched to the Orthodox Congregation Shaarei Tefillah, where the rabbi set a welcoming tone for her family. Members took her son to services and encouraged him to lead part of the Shabbat service.
Arlene Remz, executive director of Gateways: Access to Jewish Education, which offers educational services to Jewish children with special needs in the Boston area, says individuals with mental illness often fall through the cracks.
“Mental illness and emotional needs in some ways have been the least acknowledged and least talked about type of special need,” Remz said.
Gateways recently expanded its synagogue b’nai mitzvah partnership for special needs students. Students have tutors or attend small classes through Gateways, then hold bar or bat mitzvah ceremonies in their home congregations.
Gateways is beginning to train religious school staff to teach Hebrew in a “multisensory” way — for example, using color coding or mnemonics.
Sandy Slavet, who works for Jewish Family and Children’s Service in Boston, says many congregations try to be inclusive but don’t know how, for example, to handle a person who interrupts with questions during a sermon.
“Synagogues are trying, but I’m not sure any of us know the best way to do it,” Slavet said.
Gettes cites two main barriers to inclusion for those with physical and mental disabilities: the expense of retrofitting older synagogue buildings to make them physically accessible, and attitudinal barriers where congregants and leaders may acknowledge physical disabilities but not emotional or cognitive ones.
And there are questions about how to communicate inclusivity to others.
While in recent years there has been a greater awareness of the need for inclusion, Christensen says, synagogue officials and congregants fear taking the steps needed. She says they worry about the financial costs of accommodation, about saying or doing the wrong thing or about lowering standards for “typical” students when opening a religious school to kids with disabilities.
Christensen acknowledges there are few easy solutions, particularly when it comes to mental illnesses that result in behavioral problems.
The Union for Reform Judaism, according to Rabbi Edythe Mencher, who consults with URJ congregations on creating caring communities, provides literature and online information about mental health, eating disorders, suicide prevention and depression.
Congregations are urged to partner with mental health organizations, and clergy are encouraged to speak about mental health issues from the pulpit and offer teenagers classes on recognizing depression.
The United Synagogue of Conservative Judaism’s Commission on Inclusion of People with Disabilities in 2008 published a guide for congregations wanting to be more inclusive.
Yachad, The National Jewish Council for Disabilities, is run by the Orthodox Union and has programs, including Shabbat retreats, for those of all ages. Participants visit communities, interact with their peers and participate in synagogue life — leading prayers, reading from the Torah, or giving a d’var Torah.
Ideally, Mencher says, synagogues can provide a place where people who have difficulty socially can feel welcomed.
“Whether through adult education or programs for preschoolers," she said, "our effort and work is to extend the message that the Jewish community is for everyone.”