As someone living with Bloom syndrome, Rivky Berman couldn’t hide the fact that she was “different.” That, however, only served to fuel her desire to be a spokesperson for the acceptance of every individual’s unique path and circumstances.
It was also what brought her to serve as a member of the advisory board of the Ruderman Chabad Inclusion Initiative (RCII), an organization aimed at providing Chabad organizations worldwide with the tools and resources they need to advance the inclusion of people with disabilities in every part of their communities.
“She was a powerhouse,” says Chaya Perman, a Chabad shlucha in Venezuela and member of the RCII team. “She had a vibrancy to her that might seem to be a contradiction to the life she was living. She was very feisty. When you saw someone as physically little as she was and who at times seemed short of breath, yet was so full of life—passionate and caring, and who wanted to accomplish so much—it made you say, ‘Wow!’ ”
Berman passed away on May 29. Bloom syndrome is an autosomal recessive disorder caused by gene mutations. It is characterized by short stature, a high-pitched voice, and a predisposition to the development of cancer and genomic instability. An extremely rare disorder, it is more common in those of Eastern European (Ashkenazi) Jewish background.
‘A Living Example’
“There is a phrase in the disability community: ‘Nothing about us without us.’ Not only did Rivky have a disability, she grew up in a family that has been part of Chabad for generations and became a shlucha herself,” says Dr. Sarah Kranz-Ciment, PT, DPT and project director for RCII. “She had all of the typical experiences—school, camp and living as an emissary of the Lubavitcher Rebbe [Rabbi Menachem M. Schneerson, of righteous memory]—for someone growing up in the Chabad-Lubavitch community.
“As our mission is to increase the inclusion of people with disabilities throughout Chabad communities worldwide, who better to be able to speak to that than Rivky? To have her unique perspective on the board was invaluable.”
Adds Perman: “Rivky embraced the challenges she faced. She felt that this was the purpose that Hashem gave her in life and her shlichus in the world. She was real and didn’t minimize her challenges, yet she accepted them with such love and used them in a positive way.”
It was her Chassidic upbringing, Perman believes, that helped Rivky, who was only 29 when she passed, accept the challenges that others might reject. As Perman says: “It was the fire—the motor that made Rivky run.”
Though she was only a board member for a few months and had just started to envision her plans for action, Berman’s legacy is certain to live on. She pushed the RCII to recognize that although Chabad already lives and breathes Jewish inclusion in its very essence, there is still much to do by way of implementing disability inclusion on an everyday basis.
“Rivky’s message tied together everything we are trying to do in a living example,” says Kranz-Ciment. “She believed that Hashem put her here with her challenges because He trusted only her with those challenges, and if we truly look at everyone in that way—that Hashem entrusted each of us with something unique to offer—then acceptance and inclusion would be a given.
“We believe in our core,” she concludes, “that if we all acted like that, it would be a different world.”
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