An Israeli mum who refused to give up in the face of a family setback tells Matei Clej how she beat the odds
Not long after her son Rotem was born with cerebral palsy and after doctors had told her that he had no awareness of his legs, Israeli mother Debby Elnatan began designing something to help him walk.
Determined to help him to overcome the obstacle, she went to work on prototypes for a harness. Her design eventually became the Firefly Upsee, which has since helped other young children with motor impairments.
With the help of a northern Irish company, Elnatan, a native of New York City, is now rolling out the invention.
It consists of a belt that goes around the waist of the adult who accompanies the child, a harness that allows the child to stand upright and double sandals that allow both to walk together.
Around 7,000 children have used it since its April release by Irish manufacturer Leckey.
The effect on their lives has been palpable.
“My Facebook is flooded with videos of kids flying kites, fishing, feeding ducks, bowling, petting dogs, opening doors, even emptying out the kitchen cabinet,” says a beaming Elnatan. Even health and safety warnings haven’t prevented children skateboarding, dancing and playing football in the Upsee, she says. “It answered my need for Rotem be active and involved on his feet, answered Rotem’s need to play and be active, his brother’s need for a means to have fun with his brother and my husband’s need to play with his son,” says Elnatan.
Now 19, Rotem is an aspiring disc jockey and although his mum helps him to operate his mixing equipment, he retains full creative control, picking all the tunes and hyping the crowd on the microphone. He has played recently at a Passover party at Ilanot, his special school in Jerusalem.
The idea behind the invention, Elnatan points out, is not for parents to do things in place of their children. It’s more about the parent doing everything the children can’t do, and the children doing the rest. “If you give the children the lead, they forget that there are parents behind them,” she says.
Elnatan the inventor was building things long before Rotem’s birth. Her engineer father gave her a set of tools for one of her birthdays, and taught her to sew and to use tools to build objects, a talent she inherited from him, while she was growing up. Her mother was from an Orthodox family and kept a kosher home although she wasn’t herself Orthodox.
The family went to synagogue on holidays and kept Shabbat. Now a mother herself, back in the US Elnatan set about establishing a women’s labour co-operative and a direct marketing scheme for Tennessee farmers, recalling: “I was the first Jew some of them had met.”
She made aliyah in 1983, moving to a young country built on the same values of self-reliance and self-determination she saw embodied in her father. Her commitment to social justice led Elnatan to insist the product remain accessible to all families. She held out for an online distribution deal to keep prices down, to which Leckey agreed.
Inclusivity also permeates Elnatan’s philosophy of ‘special needs’, an expression she is not entirely comfortable with. “There is no such thing as special needs” she says. “We all have the same need, which is to take part fully in life. What are special are the solutions we must find so that our kids can live a full life, emotionally in terms of childhood, work and leisure.”
Applying this philosophy, Elnatan co-founded and is still involved in Shemesh, an Israeli state-funded scheme for families of disabled children – the name is an acronym for the Hebrew Shen Men Shen, or Full Family Rehabilitation. Currently in a pilot programme, it aims to tackle what Elnatan calls “broken child syndrome”.
The programme is based on the importance of the family in the rehabilitation process of disabled children. As Elnatan explains: “Focusing on the child’s abilities and demanding that he or she takes the responsibility and be involved, as much as possible, just like all the other members of the family will contribute to his or her growth and enable a balanced family life.”
Elnatan says she feels she has a syndrome of her own – she is obsessed by spreading whatever has helped her in her life. This makes for a hectic schedule, which includes a speech at the 2014 National Summit of AIPAC, the American-Israel lobby group, next week in Dallas, Texas, where a film featuring her work is to be unveiled.
“I had to learn organisational skills. I work really hard, and I haven’t had a vacation for while,” she says. When she’s not working hard, Elnatan enjoys her time out, which usually involves music – a family passion. She still plays the fiddle in her country band Habandanot (the Bandanas), while her oldest son is a professional jazz guitarist, another plays contrabass, her husband, Zohar, teaches guitar, and Rotem is finding ways to use hand motions and speech to control music production software.
For Rotem, like his mother, the odds are there to be beaten.