The year 2016 was a milestone for Kalman and Malki Samuels. It marked the inauguration of a dream years in the making – the opening of the Shalva National Centre, one of the largest centres of disability care and inclusion in the world. Built not far from the entrance to Jerusalem, the 12-storey world-class complex features an auditorium, a gymnasium, hydrotherapy and semi-Olympic pools, a virtual reality therapy suite, a research and study institute, a café, some of whose workers have developmental disabilities, and accommodations for 100 respite sleepovers per night.
How was it that Kalman and Malki Samuels came to create this extraordinary organization that assists 2,000 children with disabilities each week, while empowering families and promoting social inclusion? The answer lies in the subtitle of Vancouver native Kalman Samuels’ Dreams Never Dreamed: A Mother’s Promise That Transformed Her Son’s Breakthrough into a Beacon of Hope (Toby Press, 2020) – it was a mother’s promise.
In 1977, the couple’s healthy, lively baby boy, two weeks short of his first birthday, was checked by a doctor at a Jerusalem clinic before receiving his second DTP inoculation; and all his developmental milestones were fine, so the nurse gave him the shot.
But Malki knew the same day that something was wrong. “I took Yossi home and followed the instructions they’d given me at the clinic…. I bathed him, gave him baby paracetamol and let him sleep. The moment he woke, I knew my baby was gone. He looked up at me with shiny eyes as if to say: ‘What have you done to me?’”
Only later did the couple discover that, on that October afternoon, “Israel’s health authorities had already known for almost five months that the vaccine batch they were using … was dangerously flawed.” The defective pertussis (whooping cough) component was from the Connaught Laboratories of Canada. The diphtheria and tetanus components were from the Israeli company Rafa, which had combined the three.
Thus began a saga of almost 40 years of anguish, faith, research, perseverance, legal battles and, ultimately, the realization of dreams, not only for the injured Yossi, but for thousands of other children with disabilities.
Dreams Never Dreamed is written chronologically, beginning with Kalman’s personal story of visiting Israel as a college student in the 1960s, eventually becoming Orthodox, making aliyah and marrying his life partner. He writes his family’s spellbinding story with an honesty and openness that opens and pierces our hearts as well.
Yossi was ultimately diagnosed as legally blind – though he loved to wear glasses because it helped him feel more competent – and legally deaf. He is also severely hyperactive.
The Samuels left their home in Israel for New York, following every medical lead in search of help for their son. While her son was attending the Lighthouse – a famous specialized school for the visually impaired – Malki made a pact with God: “… I promise You this. If You ever decide to help my Yossi, I will dedicate my life helping so many other mothers of children with disabilities whom I know are crying with me for their children.”
Some challenges were especially painful, like when children teased Yossi, or when an important Jerusalem rebbetzin, visiting New York, said to Malki, “It’s not fair to yourselves or your healthy children…. You should consider moving this child out of the house, so you can get on with your lives.” Malki answered her: “You have no faith in God.” She invited the rebbetzin to wait 20 minutes, till Yossi came home from school. She saw a child nicely dressed, with glasses and hearing aids, carefully navigating the steps and hugging and kissing his mother, happy to see her. The rebbetzin cried and asked forgiveness.
A few years later, the couple learned that a lawsuit could only be filed in Israel, since that was where the vaccination had been administered. They found an excellent Israeli lawyer and doctors willing to testify, and the family returned home. Samuels describes the legal battles in excruciating detail. In October 1983, five years after the vaccination and after exhaustive paperwork and research, the couple filed suit against the Canadian Connaught Laboratories, the Israeli Rafa pharmaceutical company, the city of Jerusalem and the State of Israel. (The lawsuit ended in a settlement that, even according to the judge, was less than they deserved, but would save them more years of expensive and aggravating legal action.)
At the age of 8, Yossi experienced a “Helen Keller” moment, when Shoshana Weinstock, a warm and loving teacher who was deaf herself taught him his first word – shulchan (table) – using finger spelling. “All of a sudden, he lit up and he got it,” Kalman is quoted as telling the Jerusalem Post. “She taught him the 22 letters of the Hebrew alphabet. Another speech therapist taught him how to speak Hebrew and, slowly, he began to talk.” After that, Yossi was unstoppable. He learned to type on a Braille typewriter, to pray and to speak to those who were able to understand him.
Spurred on by their son’s breakthrough, in 1988, the couple wrote the first proposal for an outreach program that would help other families with children with disabilities. In 1990, that proposal became Shalva, the Israel Association for the Care and Inclusion of Persons with Disabilities, which began as an afterschool program for six children in the Samuels’ Har Nof apartment. The name Shalva is derived from Psalm 127 and means serenity, but, like any new enterprise, the road to success was challenging. The book is filled with anecdotes about how chance meetings on airplanes, or through conversations with a friend or a neighbour, Kalman reached donors who kept Shalva going and led to its development and expansion.
In addition to giving her life and creativity to making sure the professional programs would be the best they can be, Malki, the powerhouse engine behind Shalva, was involved in every aspect of the design and building of the Shalva National Centre, right down to the tiles. She was determined that it feel like a home, not an institution. Renowned Israeli artist David Gerstein, deeply moved by the Shalva story and appreciating Malki’s vision, created a magnificent 20-foot-high mobile of metallic butterflies that hangs in the Shalva atrium.
Around 2005, a gifted young musician, Shai Ben-Shushan, offered his services to Shalva. He had been a member of the Duvdevan special forces unit in the Israel Defence Forces and suffered severe injuries from a grenade attack while pursuing terrorists. He told Kalman, “Like a baby, I had to learn again to eat and to talk. My life was destroyed … I learned what it was like to be helpless and dependent on others … and I began to think about going back to music and sharing it with others who have similar challenges.”
By the end of a year, Shai had created the now world-renowned Shalva Band, signaling to all that having disabilities does not mean one cannot reach for the stars and make dreams come true.
In 2020, Shalva graduated its first program of young men who entered the IDF as soldiers in the Home Front Command unit. Israel’s Ministry of Foreign Affairs brings heads of state and diplomats to Shalva, just as they take them to Yad Vashem: World Holocaust Centre and to Mount Herzl, the burial place of soldiers who died defending the state of Israel.
Dreams Never Dreamed is alternately inspiriting, infuriating, funny and enlightening, but, for me, Malki’s voice and her photograph are missing. If you want to “meet” her, you can watch a mesmerizing Shalva-produced film on YouTube, About Yossi – A Film About Yossi Samuels.
The Yossi of today is smart, learned, eloquent and brave, with a sharp sense of humour. He can type, read, and daven in Braille, and particularly enjoys high-level Torah literature and magazines. He has traveled the world, met with celebrities and presidents (in Israel and America), is a horseback rider and a certified wine connoisseur. Kalman writes, “[Yossi’s] close friends number in the hundreds and acquaintances in the thousands.”
As his walking ability and balance worsened, Yossi eventually required a wheelchair. “Our blind and deaf son said, ‘For the first time in my life, I feel handicapped,’” writes Kalman. “Yossi had never referred to himself as blind or deaf, but rather ‘low vision’ and ‘hard of hearing.’”
Kalman recalls in the book how his daughter, Nechama, told him that he was like Forrest Gump: “Mommy had her dream and told you, ‘Run, Kalman, run!’ You’ve never stopped; it has coloured your life and all of ours.”
And the lives of thousands more.
Toby Klein Greenwald is an award-winning journalist, the artistic director of Raise Your Spirits Theatre, a poet, a teacher and the editor of wholefamily.com. This review first appeared in the Fall 2021 issue of Jewish Action.