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Life in Limbo: Disabled Syrian Refugees in Jordan

David Scales, an American doctor, spent months working with Syrian refugee communities in Jordan. He recently returned to the country to reconnect with some of his old patients who suffer from spinal cord injuries and discusses the difficulties physically disabled Syrians face in Jordan.

Written byDavid Scales Published on Feb. 18, 2016 Read time Approx. 4 minutes
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“Do you eat eye?” the man asked me, tearing meat away from a sheep’s skull.

I was pleased to have been given the option. “No, I do not eat eye,” I replied. “Thank you.”

I was the guest of honor at a small apartment on the outskirts of Amman, Jordan, where a group of about 15 Syrian refugee men live together. The bond that unites them is their paralysis. All of them have injuries to their spinal cords from fighting in the Syrian civil war. Abu Humam, the man offering me sheep’s eye, helps organize the center.

A few of the men were my patients when I volunteered at a spinal cord injury centre in Amman in 2013. After I left in the spring of 2013, many of the patients from that original centre – which was really just an apartment – went wherever they could find support and housing. Two are now in Turkey, a few scattered around Amman, but most have landed in this apartment in the suburbs. Through friends, I tracked them down and was invited to visit.

According to a study published last year by Handicap International, about 1 in 15 Syrian refugees living in Jordan were injured in the war, 72 percent of them men. No one knows exactly how many Syrian refugees with spinal cord injuries are living in Jordan. Many remain hidden. As former fighters that crossed into Jordan illegally, they could be deported back to Syria or interred in a special refugee camp if they are discovered by Jordanian authorities.

When I was in Jordan in 2013, I felt hopeless. People with spinal cord injuries have complicated conditions that require special beds, cushions to prevent bedsores, physical therapy, wheelchairs, medications and more. In the U.S. it can cost tens of thousands of dollars a year for each patient. For some, the first year alone can cost upwards of $100,000.

In Jordan, I thought, things could only be worse. There’s no primary care, and no consistent medical care for these men except for hospital visits. Yet their condition puts them at risk for myriad complications. They all have tubes in their bladders because spinal cord injuries make it so they cannot urinate. Yet these tubes are nests of bacteria, leading to repeated infections. Now that they aren’t using their leg bones, their bodies start to dissolve them, making them brittle. The extra calcium in their blood from the dissolved bone makes them prone to kidney stones. Nerve pain from their severed spinal cord can shoot through their legs, much like that vibrating, electric pain you get from hitting your funny bone. Worse, sometimes that pain is constant. Lacking nerve stimulation, their muscles can become contracted, causing painful cramping.

I’ve been back twice since 2013, and been surprised how well some of them are coping.

“We’re all Syrians,” Yasir told me, rolling his wheelchair in the room just as I asked some of the unfamiliar patients where they were from. “It doesn’t matter where he’s from,” he said.

Yasir (not his real name) is among those who have managed to adapt. He’s largely kept urine infections at bay through some unorthodox antibiotic use (antibiotics are available over-the-counter in Jordan). He’s also gotten rid of his bedsores and takes no pain medications. Even without the proper equipment and cushions, he’s kept the bedsores away. In short, he’s done an amazing job with what was available to him.

But it’s not all sunshine and rainbows. Ahmed had just returned from getting x-rays at the hospital. With his brittle bones, his leg was broken during a physical therapy session, but the surgical repair had gone poorly. The metal rod in his thigh was too long, scraping on his kneecap whenever he bent his leg, like when getting out of bed to a wheelchair. I emailed the x-rays to a Syrian-American orthopedic surgeon who recommended the surgery be redone. One surgery is expensive enough, now the limited resources shared among the men in the apartment will need to be spread more thinly to find the means to do a second.

Strictly medically speaking, Ahmed and many of the others would do better in a country with accessible, high-quality healthcare. But there are barriers to emigrating. In addition to the drawn-out refugee resettlement process, there are the practical matters of how to live after arrival. Yasir applied for asylum in the U.S. but he was told by UNHCR that he would only get about eight months of support once he landed. After that he would be on his own. Requiring a wheelchair for mobility after an injury to his lower back, Yasir, who speaks only a few words of English, gave up on his application. “I don’t know anyone there, how could I be independent in eight months?” he asked me.

Which lays bare one of the major problems many refugees face regardless of their disability: the question of what’s next. Like these men, many are stuck in a kind of limbo – they’re not allowed to work and do not have access to a formal education system.

So they wait. In the meantime, the Internet is their education, their classes derived from their friends’ posts on Facebook, lessons gleaned via Skype chats with their friends still in Syria, still fighting the war.

For one afternoon visit, I had the fortune to learn with them. After an afternoon catching up about old friends, looking at x-rays and talking about chronic urinary tract infections, we sat down to a lunch that included stuffed intestines, tongue, brain and, of course, eye. Like with their injuries, they had made the most of what they had. And they were grateful.

While honored by the gesture of being offered delicacies by those struggling to get by, I was secretly elated to just eat intestines and tongue, and pleasantly surprised to discover it was better than I expected.

Top image: A Syrian refugee woman cooks inside her tent at an informal tented settlement near the Syrian border on the outskirts of Mafraq, Jordan. (AP Photo/Muhammed Muheisen)