Kurdistan
A worker looks for items to salvage and sell from the garbage of Sulaimani city, dumped at a site on the bank of the Tanjero River, south of the city, February 22, 2020. Photo: Hannah Lynch
SULAIMANI, Kurdistan Region – Dark hair cut into a bob framed the round face of a young girl craning her neck to peek around her teacher, curious about the stranger in her classroom. “Bexerbe,” she said with a shy smile. Welcome.
“How old are you?” I asked. “Two!” she replied, holding up the corresponding number of fingers before her teacher gently corrected her. Nine-year-old Alla* has Down syndrome. She is a student at the Educational Training Centre for Children with Special Needs, a facility run by Sulaimani-based non-governmental organization Kurdistan Save the Children (KSC).
KSC’s centre is a rare institution that caters to the needs of children with learning disabilities in a society that is slowly coming to understand and accept children with diagnoses like Down syndrome and autism. About 500 children are benefitting from KSC’s centre, 75 of them full time students. Another 1,070 children have applied.
In Sulaimani province, more and more children are born with genetic abnormalities, according to new research. Dr. Farhad Abdulkarim Barzinji is executive manager of Microgene, the only lab in Sulaimani doing the prenatal and neonatal DNA testing that diagnoses genetic abnormalities. He provides testing for hospitals across the province and has seen an eight percent increase in Down syndrome – and it’s growing. “The curve is increasing exponentially,” he said. He is writing up his research in a paper to be published later this year.
The Kurdistan Region already has a high number of children born with abnormalities caused by incidents such as the 1988 chemical attack on Halabja, or inter-family marriage within close-knit communities. At his lab, Dr. Barzinji interviews parents and tests their DNA to learn their family history and discover any genetic mutations they may carry. Engaged couples will come to him for testing and Dr. Barzinji steps into the role of marriage counsellor, giving advice on whether or not they should wed based on what genetic material they will be passing on to their children.
But many of the new cases he is seeing cannot be attributed to these known factors and, as he eliminates the potential causes, he is frequently left with one common denominator: environmental pollution. “We cannot say that just chemical weapons had an effect,” he explained. It’s oil, vehicle exhaust, industrial pollution, unhealthy food. “[It’s] everything. Everything.”
A fetus, in the very early stages of development when cells are rapidly dividing, is highly susceptible to aberrations and there is growing scientific research linking environmental pollution to genetic mutations or problems in gene regulation. A study done in Hamilton, Canada found pollutants from steel mills caused mutations in the sperm of male mice. Researchers in Vancouver discovered that even short term exposure to pollutants from diesel exhaust affected gene regulation – the process of turning genes on and off. New research out of Harvard has linked damaged DNA to common additives in plastic.
Proof of Dr. Barzinji’s hypothesis can be found in the Tanjero area near the river that runs a few kilometres south of Sulaimani city. Oil, concrete, and steel factories line the road, and the city of Sulaimani dumps its trash here. A grey haze hangs over the valley and the air is acrid. The area is a well-known environmental hazard.
“It’s a disaster,” said Dr. Barzinji. “All the patients who come from Tanjero definitely have genetic defects… particularly if they’re pregnant.”
With more genetic abnormalities, more children will need specialized education and care. Those who attend KSC’s centre are the lucky ones. Specialized teachers, social workers, psychologists, and physiotherapists are on staff. Each child has a tailored program that includes one-on-one lessons, sports, music, group activities, math, and science – designed to meet their specific needs and delivered in a way that fits how they learn. Parents are closely involved so that the education continues at home, too.
Six years after the centre opened its doors, staff say they are seeing a change in how children with learning disabilities are welcomed in wider Kurdish society. It used to be that children with developmental disabilities were considered a shame and never seen in public, explained Sirwa Gharim, educational coordinator at KSC. But now, it is common to see children with diagnoses like Down syndrome out in public. “Parents can hold their head high without having negative connotations,” she said.
Parents have learned about their children’s rights and “now they are the torchbearers,” advocating for their sons and daughters, she explained.
Society may be adapting, but government services haven’t caught up, according to every professional asked about the issue.
Public schools are not equipped to give special attention to students with learning difficulties. Most schools will either treat a child with a learning disability as they would all their students, or they tell the parents to keep their child at home. The government gives a monthly stipend to families who have children with disabilities, but even with that, the extra medical expenses for a child with special needs are beyond the means of many families.
If the trend Dr. Barzinji is seeing continues and the frequency of genetic mutations grows exponentially, the inability of public services to address the needs of children with special needs and their families will only get worse.
Pediatrician Dr. Hersh Hama says the government and civil society actors need to take a concerted, multi-disciplinary approach to increase public awareness, provide services, and improve education of teachers. The number of children able to access the resources they need through centres like KSC’s is in the minority. For most families, a child born with special needs is a hardship, eased only by death.
“This community is difficult for normal people,” said Dr. Hama. “What is the situation if you have a child with special needs? Most of the parents want the child to die because they are a burden.”
*Names have been changed to protect the privacy of the children.
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