Flickr/1llustr4t0r.com. Some rights reserved.The first sign of trouble was when her son Wael’s doctors left their village in Syria. Trying to reach medical help elsewhere was dangerous. Then the schools closed. Each day, the bombs drew closer and closer—life as Kawthar knew it was over. With her country at war, her stability and safety crumbled. For the mother of a child with a disability, the situation quickly turned into a nightmare. So she fled Syria for Lebanon, where her husband was already working, with her three children – Mona, 15, Wael, 13, and Fouad, seven.
That was three years ago.
When the family arrived in Lebanon, she had a hard time finding accessible housing and schools. Wael has Hunter’s syndrome – a condition that results in intellectual and physical disabilities. He needed a ground-level room and open spaces that allow light to enter. He needed a school that could accommodate him and help him learn.
Everyone displaced by conflict faces harsh realities – a sense of disorientation; not knowing what tomorrow will bring or where to go for help. “My story is only one of two million,” Kawthar told me.
But what is unique to her experience is that Kawthar is also struggling to make sure that Wael’s needs are being met. The family finally found a place to live, but the nearby schools said they could not accommodate Wael and refused to admit him. Her children were rejected by another school that demanded original copies of vaccinations – hard to get for families on the run.
This is what it means to be a refugee. And if your child has a disability, you feel you’re invisible even to the rescuers.
The school that would take them was far and Kawthar cannot afford the bus. She walks them one hour each way. Even there, Wael does not obtain the support he needs in the classroom and school officials act as if she is a troublemaker if she presses them for accommodations.
Kawthar worries about her other children too, and that she’s been too busy chasing the help Wael needs to give him and his siblings the attention they require. “They are exhausted and not learning anything,” she said. She feels guilty all the time.
Wael was shuffled from doctor to doctor to try to find the care he needs. All of them expressed concern about the complexity of his medical issues. In the absence of adequate support, and with the stress caused by his environment, his health is deteriorating and his condition is worsening. The doctors reiterated the same message: we cannot help you here.
Through word of mouth, she learned of a doctor in Beirut who might be able to help. He told her the same thing: “You need to leave because we have no way to help you here.” But he sent Wael’s file to UNHCR, the UN refugee agency, and urged them to take action.
Although UNHCR began to process her application for refugee status and approved it 18 months ago, the procedure has stalled after her interview in Germany for potential resettlement two months ago. She doesn’t know what is holding up the process, so they continue to wait.
Under international treaties on refugees, children, and people with disabilities, Kawthar and her children have a right to health care and education, even in situations of conflict.
Kawthar wonders if their journey to safety will worsen Wael’s condition. And not surprisingly, she has grown impatient in her wait. “I have tried everything,” she said. “But still, I’m here.”
This is what it means to be a refugee. You lose your home, your citizenship. You crave a stable environment. And if your child has a disability, you struggle to obtain the essential care they need. In fact, you feel that you’re invisible even to the rescuers and again and again, you hear the refrain, “We cannot help you here.”
Governments and international organisations need to pay special attention to the needs of people with disabilities and their families – or they will be lost in the shuffle.
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