Why are so many children born with mental and physical disabilities in Jenin? It is this question the staff of the Local Committee for the Rehabilitation of the Disabled (LCORD) set out to answer after more than a decade of working with such children and their families.
I had the privilege of meeting the staff at their clinic recently, to deliver some money donated to them by a London based collective. They do an incredible amount of work with children suffering from mental or physical disabilities; the most difficult of cases are children born with cerebral palsy (CP), a debilitating condition that affects the sight, hearing and movement of limbs of the sufferer.
LCORD carried out some research, to try to discover what was causing so many cases in their region. They interviewed 215 mothers of CP sufferers, and found something they had not been looking for: that almost 70 per cent of them (150 of the mothers) were all using the same, cheap contraceptives.
Is there a causal link between these contraceptives and CP? To say the least, they are an ineffective form of birth control, and possibly much worse than that. We cannot answer this question here, and more research will have to be done to make a complete determination. Their research findings have been passed on to professionals in the field, and while they hope for some kind of response to this, they have no idea what to expect.
If a connection is established, then this would be a national scandal in any other country (if the Thalidomide scandal in the UK is anything to go by). But this is Palestine, where the Israeli state “mapped” the areas where malignant diseases are growing, but looked only at the Jewish population centres, ignoring large Palestinian cities, such as Nazareth or Sakhnin, due to a “lack of funds”.
We can only hope for some kind of follow up.
LCORD is an organisation which badly needs money. I was lucky to find them through a friend of mine in Jenin; lucky because they don’t have a website and they could really do with one to help raise more funds. It is a community based organisation in Jenin Refugee Camp which opened its first clinic in 1991 to help some of the many disabled and wounded children from the first Intifada. Soon they began making home visits to families, and helped modify their homes for easier access for disabled children, such as changing the bathroom layout, putting in ramps and taking out unnecessary walls.
From the outset, LCORD had financial difficulties, and they were renting just two small rooms in the camp. In 1995 they received their first grant from Save the Children and United Nations Relief and Works Agency (UNRWA) for Palestine Refugees. With that money they built their current centre. There is now a children’s play room, for play therapy, a clinic with three beds and other basic medical equipment, a computer room, an office and much more. The walls are covered with paintings and poetry from the children themselves, and the walls inside the playroom are filled with colourful decorations. Their two-story office boasts the only children’s library in Jenin Refugee Camp.
Like almost every building in the camp, the LCORD office was raided in April 2002, when every other West Bank Palestinian city was invaded and placed under curfew. We will never know how many people were killed after the invasion and demolition of large parts of Jenin Camp. The LCORD building, at least, was left standing. But they never got their hard drives to their computers back after they were stolen during the invasion; the racist, unprintable graffiti left by the Israeli soldiers on the walls and over children’s drawings was inexplicable; and the damage and bullet holes in the building took over two years to repair or cover up (and even today you can see bullet scars on the front facade). The “Computer Room” today is simply a room for children to sit at desks and draw or paint — since the invasion the computers lie useless, to this day.
But Palestine is full of such stories - there is no point in weeping over the past, and people somehow carry on with their work.
The work of LCORD is primarily about making families with children who are disabled — physically, mentally or both — self-reliant. Specialist doctors for CP, for example, are expensive and hard to come by, so the aim is to train the families in how to look after and treat their children as best they can themselves. As well as cerebral palsy, LCORD deals with children with physical disabilities, such as those with missing limbs. They have an array of modified wheelchairs, crutches, walking aids, and provide training for their proper usage.
To get artificial limbs fitted in Palestine is sadly something which is in high demand, due to the high rate of injuries from military invasions. But for treatment at a fully equipped hospital, you have to travel to either Jerusalem or to the Bethlehem Arab Society for Rehabilitation in Beit Jala. As the West Bank has been carved up by the Israeli roadblocks, walls, fences and Jewish-only roads connecting the settlements, traveling from one end of occupied Palestine to another is impossible for most Palestinians.
Nick Pretzlik, from the UK, once escorted Hassan, an 11-year-old boy born with spina bifida in Jenin, to the hospital in Beit Jala for treatment. That was in January 2003, and he describes seeing Hassan’s progress five months later, in his moving book Three Weeks in June, “I could tell from Hassan’s smile that he was pleased to see me. He has no visitors. Because Palestinians are forbidden to travel, none of his family can get there from Jenin. He misses them terribly and worries about events at home…”
In 2003, LCORD proposed setting up a clinic for children with artificial limbs. They sent two specialists to Jordan to be trained in how to fit the artificial limbs. Upon completion of their training last year, they have since returned to Jenin, but LCORD can’t afford the equipment for the new clinic. They have received funds for this project already from TAMEKEN, USAID, UNRWA and from the local community in Jenin itself. The money raised, however, was $7,000 short of their goal.
So, as you can imagine, they were pretty pleased to see me arrive one Saturday morning with over a thousand dollars in cash for them. A friend of mine contacted me to ask if I could help them find a good community-based organization to donate some money they had raised for Palestine. LCORD still needs several thousands of dollars to obtain the equipment necessary to start the clinic.
After 2001, LCORD quickly expanded into four regional offices, a direct response to restrictions on movement during the second Intifada that prevent them from visiting families in the villages around Jenin. As the only such clinic in the northern West Bank, word quickly spread about their work and they quickly found more families than they could cope with.
LCORD focused on training a qualified staff, which quickly expanded to over 150 nurses and holds regular training sessions for families in physiotherapy, speech therapy and general assistance. LCORD’s staff also have qualifications in community relations, finance, and management.
The children born with CP are one of the biggest challenges they face in the area. They are, says LCORD manager Amer Rahhal, the most difficult cases for the clinic’s staff, the families of such children, and for the children themselves. In 1999-2000 there were 30 such patients from Jenin camp alone. By 2001, LCORD found that there were 150 more cases in the outlying 15 villages surrounding Jenin, which meant stretching their limited capacity to help.
One of the main goals is to integrate the child back into school or nursery. Mohammed Sa’es, seven-years-old, is a success story in this respect. After five years of treatment for CP, and with constant support from the family and clinic, he is now integrating into the first grade at the local school.
Abdullah Said, one-and-a-half-years-old, also has CP. He receives physiotherapy and speech therapy, and gets a special education at LCORD. The aim is to integrate him into school with the other children in Jenin one day.
In 2004, LCORD were treating 330 children in 35 regions, trained 183 women to look after their children, and produced a handbook on basic help in daily life, offering instructions on how to bathe and feed a child with CP and help them strengthen their muscles.
Without the work that LCORD does, at homes or in the clinic, the families and victims of a range of mental and physical disabilities would go untreated. With some help from outside organisations, perhaps the research that they have carried out will be followed up and a cause for the large number of CP sufferers in Jenin established which in turn could help prevent a further increase of this frightening disease.
Without the funds for equipping the new clinic, the limbless children of Jenin will not have artificial arms or legs to help ease their loss. By providing a new clinic in Jenin, they will no longer have to rely on the good fortune of meeting courageous people like Nick Pretzlik, who sadly died last summer.
The people of Jenin, when this clinic is complete, will become that little bit more self-reliant.
Salam Max, from the UK, is working in Bethlehem as assistant editor of News from Within, and is a contributor to Bethlehem Bloggers. If you would like to help LCORD raise the money they need to equip their new clinic for fitting artificial limbs, then please contact them for more details: from abroad; 00972 4243 5640, or locally; 04 243 5640 or email Locore2003@yahoo.com.
1. Copies of Nick Pretzlik’s book, Three Weeks in June can be obtained by writing to Ursula Pretzlik at firstname.lastname@example.org or by visiting www.nickpretzlik.com.