Still Standing: A Musical Survival Guide’

By Shelley A. Sackett

While most of her 21-year-old colleagues were busy planning their post-college lives, Anita Hollander was undergoing chemo and radiation therapies after her first bout of cancer in her left leg.

When she returned to Carnegie Mellon University for her senior year, she played a cabaret evening of songs by popular singers. A favorite teacher who was in the audience changed the trajectory of her life when she challenged Hollander to use her recent life experience to write and perform her own material instead.

Hollander wrote “The Choice,” about the options one makes when faced with a deadly disease. By the time her cancer reappeared five years later in 1977 – this time necessitating amputation – Hollander was well on her way to creating her show, “Still Standing: A Musical Survival Guide to Life’s Catastrophes.”

The solo 15-song cabaret chronicles Hollander’s story, from her initial diagnosis to the post-amputation continuation of her career as a musical theatrical performer. Each song, packed with humor, intelligence, and musicality, describes resources that helped her endure and persist.

“Sense of humor, great imagination, chutzpah, perspective, family, love, children, art – there’s nothing you have to buy or get,” said Hollander by phone from her Manhattan home. “Anyone who sees the show can use these tools to get through difficult times, obstacles, whatever is in front of them.”

“Still Standing” has played at the Kennedy Center, the White House, Off-Broadway, and in theatres around the country.

The New Repertory Theatre at the Mosesian Center for the Arts in Watertown will present it from Feb. 9 through March 3 during Jewish Disability Awareness, Acceptance and Inclusion Month.
Since 2009, every February has represented a unified effort among Jewish organizations worldwide to raise awareness and foster inclusion of people with disabilities. Last February, the Ruderman Family Foundation helped finance a performance of the show at Kerem Shalom, an inclusion congregation in Concord.

Hollander is as much a disability activist as a performer. “My whole career is playing roles that were not necessarily meant to be disabled, but I happened to be playing them with one leg,” she said. As national chair of the SAG-AFTRA Performers with Disabilities committee, Hollander keeps a “watchdog scorecard” of disabled people showing up in every form of media. While she thinks film still “woefully” lags behind, she is encouraged by the great strides theater and TV have made over the last 10 years.

Hollander and her three sisters grew up in Cleveland, the daughters of a part-time cantor who organized them into a four-part harmony group that “started singing before we could speak,” she said, doing shows at temple and singing at services. When Hollander married, she joined the Village Temple in New York, where she has been children’s choir director for 23 years.

She and the children collaborate to write songs about holidays and Tikkun Olam (“repair the world”). The kids came up with the idea for “Share the World,” a song that features them saying “welcome” in 20 languages that represent countries where Jews live (it’s available on YouTube).

“Working with the children’s choir has been one of the best things in my life,” she said.

Asked whether she could envision anyone else playing her part in such an intimate autobiographical piece, Hollander said she is writing a new show, “Spectacular Falls,” with the idea that someone else could perform it. However, she added that she is about to do 26 performances in a row of “Still Standing” without an understudy.

“It’s like being out on a wire without a net on one leg,” she said with a laugh.

The Mosesian Center for the Arts is located at 321 Arsenal St., Watertown. For tickets, visit newrep.org or call 617-923-8487.

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Rare genetic mutation sends family on an unexpected journey

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Luke Heller proudly shows a drawing to his speech therapist, Jessica Brown. / Photos by Shelley A. Sackett

 

By Shelley A. Sackett

SWAMPSCOTT—Jody and Noah Heller brought their newborn son, Luke, home to Swampscott in December 2013. Although he was a “sweet baby with an infectious laugh,” by nine months they noticed he was not hitting the same developmental milestones his older sister Lucy had by that age.

 

The Hellers knew something was off. Luke wasn’t able to sit up independently or crawl and never tried to put anything to his mouth. “If you picked him up, his body felt a little floppy,” Jody said.

 

Their pediatrician said Luke had low muscle tone and recommended an early intervention program. He also sent them to a neurologist. “Kids his age usually put everything in their mouths,” Jody said. “He was concerned.”

 

Luke began receiving physical, occupational and developmental services at Aspire Early Intervention in Lynn, but as he got older there were more delays.

 

He didn’t crawl until he was18 months and didn’t walk until he was 2. No one really knew what was wrong. His diagnosis was the umbrella term “globally delayed.”

 

Later, Luke was diagnosed with apraxia of speech, a condition where the brain has difficulty sending signals to the mouth to create speech. Luke knew what he wanted to say, but he didn’t know how to form the words to say it.

 

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Luke, Noah and Jody Heller at their Swampscott home.

 

The Hellers were determined to dig deeper, and visited the Genetics Department at Boston Children’s Hospital. Genetic tests in 2015, when Luke was 18 months old, were inconclusive, but the doctors urged them to keep trying. “They said, ‘we’re learning so much about genetics every day,’ and recommended we come back in two years,” Jody said.

 

When Luke turned 3 and aged out of Aspire, the Hellers enrolled him at Northeast Arc, a not-for-profit organization that helps children and adults with disabilities. It was perfect timing, because Luke would often get frustrated at not being able to express himself, which was causing behavior issues.

 

Through Northeast Arc, behavioral and speech therapists work with Luke at his home. Jessica Brown, his speech and language pathologist, also goes to Luke’s Chabad pre-school with him, where she helps him use a special iPad speech device that gives Luke a voice he otherwise doesn’t have, enabling him to “talk” to his classmates.

 

“Northeast Arc allows us to communicate with our son. He has made so much progress,” Noah said.

 

Still, the Hellers wanted to do more than just treat Luke’s symptoms—they wanted to know what was causing all these delays. Last July, they returned to Boston Children’s Hospital, ready for Luke to take a genetic sequencing test that identifies every protein-coding gene in the body.

 

This time, just before Luke turned 4 years old, they received definitive information. “The geneticists told us that he had a mutation on the TECPR2 gene, but that there wasn’t a lot of information on the disease. It was extremely rare,” Noah said. Only eight children in the world had the same mutation, most of them living in Israel, where the mutation was first discovered in 2012 by an Israeli neurologist.

 

Both Jody and Noah, who are of Ashkenazi descent, tested negative for the Ashkenazi Panel screening test, which assesses the risk of having a child with any of 11 disorders, including Tay-Sachs disease. TECPR2 is not on the panel, but can be prenatally tested by request.

 

The Hellers asked for the Israeli doctor’s name and contacted her immediately. “That started a whole new journey for us,” Jody said.

 

The Hellers hope to get the TECPR2 mutation added to the Ashkenazi Panel in the near future. Jody started a Facebook page for TECPR2 families, and several families are now following the page and sharing stories.

 

“There are definitely others with this genetic syndrome out there, but they have been misdiagnosed as something else,” Jody said. “That’s why we’re really trying to bring awareness to this newly discovered syndrome.”

 

The Hellers and their families are also attacking the disease on the medical front. They started the Luke Heller TECPR2 Foundation, a privately funded entity with the goal of finding a cure for Luke’s mutation. The Boston-based foundation has enlisted scientists from around the globe.

 

In the meantime, Luke continues to work hard and to charm those he encounters with a quick hug and a ready smile. “Luke is smart and determined. We are so grateful to the Northeast Arc,” Jody said.

 

Noah acknowledges that reconciling what happened to Luke has not been easy. “We have a strong, loving family that has really helped us. Jody has done a lot of work to keep our family together and everybody happy. She is the center and strength of our family,” he said.

 

Neshama Carlebach headlines Swampscott inclusion celebration

By Shelley A. Sackett

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Neshama Carlebach will headline Swampscott’s Shirat Hayam’s Shir Lanu Inclusion Initiative Celebration on October 27 and 28.

 

Singer/songwriter Neshama Carlebach, a passionate advocate for inclusion in synagogue, will headline Congregation Shirat Hayam’s Shir Lanu (“One Song-Every Voice”) Inclusion Initiative Celebration October 27 and 28.

“When you’re accepting people who are different than you, it means that you have acceptance and love in your heart. Period. And if you don’t have love and acceptance in your heart, that’s not a place to pray,” the six-time entrant in the 2011 Grammy Awards said by phone last week from her New York City apartment.

One of Shirat Hayam’s stated missions is to support and provide opportunities for families and individuals with special needs as well as the LGBTQ community, interfaith families, elders and everyone who seeks a genuinely respectful, compassionate and responsive synagogue experience.

“I believe that hands down, this is one of the most important missions in the Jewish world right now. Every single synagogue should have this mission attached to their synagogue statement,” Carlebach said.

Last May, the synagogue received a selective Ruderman Synagogue Inclusion Project (RSIP) grant to further its inclusion work. The Ruderman Family Foundation is a Boston-based philanthropic entity that advocates for and advances the inclusion of people with disabilities throughout society.

Michele Tamaren and Amanda Clayman co-chair Shirat Hayam’s Shir Lanu inclusion committee and attended the gathering for the cohort of new 2017 RSIP affiliates. There they met Neshama Carlebach, who performed for the group.

“We were deeply moved by her soulful ability to lift hundreds of us in that room,” Tamaren said. She and Clayman stayed and connected with her after the concert. When the Shir Lanu committee started planning the October inclusion event, Tamaren and Clayman invited Carlebach to be the weekend’s artist-in-residence and to perform a community concert Saturday night with her gospel band, The Glory to God.

 

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Neshama Carlebach has sold more than one million records, and performed and taught in cities worldwide.

Neshama Carlebach is the daughter of renowned Rabbi Shlomo Carlebach, the folksy, guitar-playing Orthodox rabbi who created hundreds of uplifting melodies, including many that are part of Shabbat services in synagogues all over the world. She sang with her father until his death in 1994, when she launched her own professional career.

She has sold more than one million records, performed and taught in cities worldwide, and co-authored the Broadway play, “Soul Doctor,” based on her father’s life. In 2016, she was inducted into the Brooklyn Hall of Fame, where she received a Certificate of Congressional Recognition for her work.

 

Carlebach credits her father for instilling in her the desire to bring inclusivity, love and wonder to the world. “My father gave that to me in my ear and in my heart from the moment I was born. That’s what he stood for. There’s no way I could have been any different,” she said.

She has done several events with the Ruderman Family Foundation. “I have never cried so much in my life, sitting and hearing these inspirational people talk about how they have struggled in their wheelchairs and how doors have been shut in their faces,” she said.

As the weekend’s artist-in-residence, Carlebach will provide inclusion teachings at the Friday, October 27 evening “Holy, Happy Hour Minyan” and the Saturday, October 28 morning “Nosh and Drash” Shabbat services. “Her teachings will focus on the Jewish imperative of inclusion,” Tamaren said.

Saturday evening, she will perform with her band and members of the spirited New York gospel choir, The Glory to God Gospel Singers, at Congregation Shirat Hayam, 55 Atlantic Ave, in Swampscott.

Reflecting on today’s divisive political climate, Carlebach thinks her father would be broken-hearted about the pain in the world and would have tried to do everything he could to bring healing. “Under his influence and in my own heart, I hope to try to do the same,” she said.

“There’s a song I sing called, ‘Y’hi shalom b’haylech’ – ‘May there be peace in your borders and tranquility in your castles.’ My father spoke about that all the time, that true peace comes from within the castle,” she said.

She paused for a few moments, then added, “I know you can’t heal what’s going on now with a song, but it would be great if all the world was waiting for was that one right niggun (Jewish religious melody).”

For more information or to purchase tickets, visit shirat­hayam.org/Neshama or call 781-599-8005.

JCCNS Inclusion Camp champions diversity

Shelley A. Sackett, Journal correspondent

 

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When Marty Schneer arrived in Marblehead in 2013 to take over as executive director of the JCCNS, one of the first people he met was Marcy Yellin, whose 32-year-old son, Jacob, has special needs and was employed at the JCCNS.

 

She told Schneer that the community lacked an inclusion camp. He asked her what she would like to see. Within months, Schneer formed a committee with Yellin and a few others, including Special Education teacher Melissa Caplan. By the following summer, the JCCNS Inclusion Camp was up and running with 20 campers and Caplan at the helm as director.

 

This year the Inclusion Camp has 40 campers, a staff of 25, and a long waiting list. Specially trained staff work with children to integrate them into Kindercamp, Simchah classic camps and the Simchah CIT program.

 

There are no criteria for admission. “We take inclusion pretty seriously, so how could we make criteria that excludes some?” Caplan asked. The only reason a camper might not receive support is if that individual already tried camp and the staff knows it is unable to keep that child of their peers safe.

 

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Special needs campers participate in the same activities as their chronological peers, including aquatics and sports. “The goal of the camp is not only to provide services to a population who until now was not included, but also to break down the boundaries that often exist when people are not exposed to differences at an early age,” Caplan said.

 

Campers range in age from 2.9 months to teenagers. Staff includes teens and young adults who themselves have disabilities, filling an additional community need. “These individuals come to work and receive a paycheck just like their non-disabled peers,” Caplan said.

 

Inclusion campers and staff cope with a variety of disabilities that include developmental delays, intellectual impairments, autism, cerebral palsy, blindness, social/emotional disabilities, muscular dystrophy, down syndrome, seizure disorder and many more.

 

Most require on-on-one aids, which is expensive, and which is covered partially through private donations and organized fundraising. “We pride ourselves that the cost to attend camp is the same for all, whether you need a one-on-one aid or not,” Schneer said. “The underlying philosophical approach is that this is good for entire community of campers.”

 

“Marty believes in the need to support a neuro-diverse population, even though it costs the JCCNS a great deal,” Caplan added.

 

The term “neuro-diverse” means normal, natural variation in human cognition. It embodies the idea that those who are non-neuro typical can live their lives as they are with accommodations and modifications instead of being forced to conform to “normal.”

 

Caplan’s educational background includes a bachelor’s degree in multiple disabilities and a Masters degree in Early Intervention. She has worked in Roxbury, Newton and Marblehead and currently teaches special education at the Clarke School in Swampscott. “I believe wholeheartedly in the spirit of inclusion. It is a passion of mine,” she said.

 

During the rest of the year, the JCCNS runs adaptive/inclusion programs. Caplan works “very part time” in the year-round Inclusion Program, which last year added inclusive basketball and lacrosse clinics, Sunday family drumming circle and an IEP (individual educational program) support clinic for families. The program already has adaptive swim and gym programs.

 

Next year, Caplan would love to expand the sports clinics and start a lacrosse league and a Special Olympics swim team. “We have tons of great ideas and committed staff and eager participants. The only setback is funding,” she said.

 

In the meantime, Yellin sees the fruits of her vision every Friday as she walks down the hill to the JCCNS where she plays music. “I see wheelchairs amongst kids playing and all kinds of people in one space. It’s a beautiful sight,” she said.