BETHLEHEM, WEST BANK // Rua Abuoda is in the kitchen chopping vegetables for the iftar her family is about to host. Her brother Mohammed eventually wakes up after his second seizure of the day, pulls himself down off the bed onto the tiled floor, and sits in the doorway watching his sister.
The 15-year-old has cerebral palsy and his epilepsy has progressively become worse. He cannot walk or talk and his muscles are tightly clenched, with his hands forming fists and his feet facing permanently facing outward.
The Abuoda family live in Aida, a Palestinian refugee camp in the Israeli-occupied West Bank, where provision for disabled children is severely lacking, with no access to additional funding from a welfare system or from UNRWA, the UN refugee agency for Palestinians.
Five years ago, Mohammed’s mother, Islam, decided to try to improve the situation. With the help of a foreign volunteer in the camp, she brought together other mothers of children with disabilities to run traditional Palestinian cooking classes, which visitors to Aida can pay to take.
With the money raised through their project, called Noor Weg, the mothers have built a community kitchen and space for the children and families, and are also able to pay the school fees of some of the children.
This year they are hosting iftars during Ramadan to raise additional income.
“The project has really changed the people (the families of disabled children),” said Islam from inside the family home. “Before the people were shy and they didn’t like to visit each other. Now people come to visit me and tell me their story about their children with disabilities,”
“When people come to our house they see that we love Mohammed so they interact with him and talk to him but some other families don’t understand their children and don’t respect them.”
There are 13 families with a total of 30 children with disabilities. Thirteen women run the cooking classes, but so far only Islam has hosted iftars.
The women behind Noor Weg faced various social and cultural challenges to get the project up and running.
“Here the culture has been really bad; they don’t like it when women work and they didn’t like it when men and women mixed,” said Islam.
“At first only women came to take part in the cooking class but after six months we had a lot of men wanting to register. At first I was afraid because we have neighbours here, but then after we tried classes with men and women we saw it was OK,” she said.
Despite the project’s success, Islam still lacks basic resources to care for Mohammed. She has to lift him herself as she doesn’t have a hoist. His wheelchair is inadequate and dangerous as it’s not fitted to him and there are no straps to hold him in if he has a seizure.
The Aida camp north of Bethlehem is for families whose parents or grandparents were forced from their homes in 1948 by Israeli forces in the Nakba.
There are now more than 5,000 people in the camp, and conditions are still rough despite many houses being built over time. Some of the original inhabitants who are now in their 80s still live in one-bedroom homes. Streets are narrow and litter-strewn.
The camp is situated alongside the Israeli separation wall built in 2006 and the four-star Intercontinental Hotel with palm trees and a large swimming pool.
Islam had gone into labour while only six months pregnant with Mohammed. She could not be treated in a local hospital and was rushed to the nearby checkpoint in an attempt to get her to Al Makassed hospital in occupied East Jerusalem. She was held for two-and-a-half hours at the checkpoint. She was bleeding heavily and nearly gave birth to Mohammed while waiting.
“They stopped me at the checkpoint because they needed a permit and I didn’t have a permit,” Islam said.
Mohammed was born premature and it is thought that he did not receive enough oxygen following his birth. Staff ignored Islam’s pleas that her son had started to change colour.
The family received little information on Mohammed’s disability until he was eight years old when he fell at school during his first epileptic seizure.
The Abuoda family has struggled to cover the costs associated with their son’s disability. They sent him to a nearby school for children with disabilities that cost 4,000 Israeli shekels (Dh3,900) a year but pulled him out after finding that staff were not properly trained to cater to his needs.
Islam decided to start the cooking project as a way to supplement her husband Ahmad’s salary as an electrician.
“I am angry with the Palestinian Authority and with all the associations because they know many people could be helped but they don’t speak out and help,” she said.
The poorest families in the camp receive food parcels every three months but there is no additional support for children with disabilities, said UNRWA field worker Addaia Marrandes.
She said the disability officers in the agency lacked an overarching plan to support such children and their families.
Back inside the family home, Mohammed sits on the floor, relaxing with his mother and sister.
As they talk and play together, Mohammed drags himself across the tiled floor towards Rua, who is sitting on a couch. He rests his head on his sister’s lap, his hand beside hers, their fingertips touching.
Suddenly his body stiffens and he starts convulsing uncontrollably. Islam leaps to her feet and together with her daughter they ease Mohammed’s heavy body into a safe seated position as the convulsions continue.
Mohammed cries out and his voice trembles between cries as Islam and Rua rub his back. Islam uses her voice to calm him, making sure he doesn’t bite his tongue, hit something with his shaking limbs or stop breathing.
Within five minutes the tremors stop suddenly and Mohammed’s head falls back into his mother’s lap, sapped of all energy from the seizure. Rua and Islam carry him into a bedroom were he sleeps in recovery after he has been given water and medication.
Sometimes he has five seizures a day lasting up to 15 minutes.
Sweating and exhausted, Islam returns to the living room where just moments ago her son had been happily playing. She has six children to care for, she is fasting and also preparing for their iftar with guests.
Rua, 16, is the closest sibling to Mohammed – not just in age but also in her relationship with him, having grown up alongside him.
Later, as she works in the kitchen with Mohammed watching, she says: “It’s very good to be around him, helping him.
“I feel responsible for him, I feel like he and I are like twins because he loves me a lot and I love him – and we are nearly the same age.
“Sometimes he comes to me to eat. I feed him and do everything for him except changing his diapers, which my father does.”
foreign.desk@thenational.ae
