IN A CROWDED refugee camp in Bethlehem, Echlas chain-smokes her way through a pack of cigarettes recently purchased by her 9-year-old neighbor. Small for his age, and always smiling, he drops by often to ask whether she needs anything from one of the small shops in the camp. As she talks, smoke fills the small room. Outside, the imam’s faithful call to prayer competes with the shouts of the children playing soccer.
Echlas’ parents became refugees during the 1948 Arab-Israeli war, when they were forced to leave their home in Beit Jibrin. Like everyone else in the village, her parents only took a few things with them, thinking they would return in a few days when the fighting subsided. Days, weeks, and then months passed. No one ever returned.
The keys to her parents’ homes in Beit Jibrin sit in her living room, serving as a constant reminder of their displacement. Echlas often wonders who lives there now, “Do you think they know someone else has the keys to their home?” she asks rhetorically.
Her father fought for Palestinian freedom with words. An active member of the communist movement, he was a regular writer for a political newspaper. While it no longer exists, it was controversial at the time. When Jordan took control of the West Bank in 1948, following the British Mandate period, her father wrote about issues affecting Palestinians.
Echlas’ mother was around 13 when she became a refugee although her exact age was difficult to determine, as at that time there were no official IDs. Her mother never had the chance to complete school.
Her parents married in the early 1960s when the West Bank was still under Jordanian control. After the birth of their fourth child, her father was arrested for writing articles which criticized the Jordanian authorities. He spent 7 years in prison. He never saw his family during this time but he communicated with his wife through letters. Traversing isolated desert areas, they would arrive infrequently. Her mother would read the letters, tears spilling down her cheeks. She would write back, describing how the children had grown: how they could talk, take their first steps, started school. Her mother’s scribbled words were her father’s only link to his family.
While her father was in prison, Echlas’ mother and her four children lived in a single room in a refugee camp in Bethlehem. She had to guard them vigilantly as there was a gigantic hole just outside their room which the small children would fall into if she were not careful. Each time one of them needed to use the bathroom, she had to take them to the only public toilet, situated on the other side of the crammed camp. Over the years, Echlas’ mother built additional rooms, as she could afford to do so. She also created a garden. She planted a lemon tree which to this day is brimming with lemons. Strong and stoic, self-pity was a foreign concept for her mother during these long years of being a single parent.
ONE DAY, very close to Ramadan, her father was released from prison. He entered the West Bank for the first time in seven years, escorted by Jordanian soldiers. Twenty minutes was all he was given to kiss his children, whom he could barely recognize, and hug his wife. After what seemed like only seconds, the authorities escorted him to Hebron, an hour away from Bethlehem, where he was required to report to the authorities on a weekly basis for a year.
From the moment he was released, her father returned to writing. He began working night shifts at a French hospital, and used any moment he could to write. One year after her father’s release, one of Echlas’ brothers, whom she never had the chance to meet, died of polio at the age of 10. Her parents had seven more children, the last of which was Echlas.
Echlas was born with muscular dystrophy, a disease that causes progressive weakness and loss of muscle mass. While she was never able to walk, the use of a wheelchair gave her independence. With the absence of schools catering for students with disabilities, Echlas spent her childhood being schooled by her family, namely her siblings and cousins, at her father’s insistence. She has never seen the inside of a classroom. Regular visits to hospitals were a feature of her childhood.
When Echlas was 10 years old, her father died of cancer. His death devastated the entire family. Without a breadwinner, the family struggled to make ends meet.
Echlas pauses. I offer to light her another cigarette, something which she can no longer do on her own. She smiles at me mischievously, all too pleased I can understand her desire, “Would you like some coffee?” she asks.
I happily agree to prepare a pot of Arabic coffee. Walking to the kitchen, the sounds of Arabic spill through the open window. Once the coffee has boiled over three times, I remove it from the stove and place it on a tray with two small coffee cups. When I return to Echlas, she is staring ahead, lost in her memories.
DURING THE LATE 1980s, the first Palestinian uprising (intifada) exploded in the West Bank and the Gaza Strip against the Israeli occupation. Echlas and her family lived amid the chaos of war. Israeli soldiers stormed their home on a regular basis, turning their house upside down and, on one occasion, physically assaulted her mother – her sole protector against the mounting violence.
One day, while her mother was briefly visiting one of their neighbors, a group of soldiers pushed the front door open. Echlas was alone watching TV. The soldiers searched the entire house. Kitchen utensils were thrown from the cupboards, furniture was overturned, shelves were emptied of their goods. Feeling utterly powerless, Echlas turned up the volume of the TV, hoping the sound would act as a barrier between her and the soldiers.
During the years the intifada raged, her education with family members stopped. She rarely left her house as it was too dangerous. Her time was spent drawing and writing in her diary.
In 1995, as the chaos of the first intifada was becoming a memory, Echlas was run over by an Israeli settler in Bethlehem while out with her family. Without stopping, the woman fled the scene, speeding to the nearest Israeli checkpoint, heading towards Jerusalem. Echlas was left lying on the road as passersby, shocked by the event, ran to help her. Her sister-in-law, neighbor and baby nephew – whom only moments before the accident was sitting on her lap – looked on in horror. Two young men who witnessed the accident followed the driver to the checkpoint, alerting the soldiers about the accident.
As Echlas lay on the ground, all she could see were shoes and legs. She could feel the roughness of the road against her skin. Inhaling her cigarette, Echlas said, “I could hear people screaming, ‘she is dying.’”
Israeli soldiers appeared on the scene. One young soldier quickly offered his assistance, helping the ambulance attendants as they treated Echlas. Another soldier fired shots into the air in an attempt to control the horrorstruck crowd.
She was rushed to a hospital in Bethlehem before being transferred to a hospital in Jerusalem for surgery. While in the hospital, she could hear doctors talk about the potential need to amputate her leg. It was the last thing she heard before going into surgery.
AFTER SURGERY, SHE WOKE UP to the strong aroma of medicine. Tubes were protruding from all parts of her body. She could not move. Doctors told her that the accident was so severe that she may never have the chance to sit in her wheelchair again. They expected her to be bedridden for the rest of her life.
The darkness descended when she realized the full impact of the accident. She had to come to terms with how heavily dependent she will be on others, given she could only move two fingers in her left hand. She could no longer brush her own teeth, wash her own face, or go to the bathroom without using a bedpan.
Refusing to be discouraged by the doctors, she spent almost a year in hospital determined to regain the ability to sit in her wheelchair. A physiotherapist worked with her daily. Echlas hid the amount of pain she experienced, especially when she tried to sit in her wheelchair, as she was afraid the physiotherapist would not allow her to continue with the treatment. The first time she sat in her wheelchair, she only managed to sit for two minutes. By the time she left the hospital, she could sit in her wheelchair for 15 minutes. Eventually, after much time and hard work, she could sit in her wheelchair for an entire day.
Describing her time in the hospital she says, “The days were long and dark. I learned how to paint using my mouth and this saved me.”
Once released from the hospital, she enlisted the help of a foreign live-in volunteer to assist her with daily life. This eased the pressure off her aging mother. What began as an experiment – enlisting the assistance of foreign volunteers – would become an essential part of her strategy to live an independent life.
Over the next two decades, a stream of women from all over the world descended into Bethlehem. These women, most of whom are university students, are thrust into the world of a refugee camp with little preparation for how their life will unfold as they care for someone whose physical independence does not extend beyond holding a cigarette. Spending all their time together, bonds form quickly; Echlas remains in close contact with volunteers who are scatted across Europe and North America.
IN 2000, BULLETS BEGAN to rain down on Echlas’ house, signaling the start of the second intifada. Unable to run, Echlas was at the mercy of those around her. Curfews, daily shooting, soldiers raiding homes, and arrests were a daily occurrence. One of her volunteers, who arrived just weeks before the war broke out, refused to leave; instead, with youthful energy, she endured the battle of war, side by side with Echlas and her family. The volunteer remained undeterred even when soldiers forced them to leave the house at gunpoint or when tear gas pervaded every room in the house, and they were coughing uncontrollably and barely able to see through their teary eyes.
However, eventually the volunteer left to return to her studies. Given the intifada, it was impossible to recruit another volunteer. Once again, Echlas had to manage without the assistance of volunteers. This meant a loss of independence and greater dependency on her family. During intense moments of fighting, the family would hide in the one room considered to be the safest. Sometimes there were up to 24 people in this small room, waiting until the shooting subsided, each absorbed in their own activities: children, oblivious to the situation, played games; women prayed; fathers worried about their children in silence.
During the mid 2000s, Echlas traveled abroad for the first time to visit former volunteers in Europe. Far from her family and the brutality of war, Echlas met freedom and security in Europe. There were no checkpoints, tear gas, or soldiers.
While in Sweden she sought asylum, a process that was long and arduous, and ultimately unsuccessful. She spent almost a year in Sweden, learning how to manage alone and becoming acquainted with male nurses helping her with the most intimate and personal tasks (showering, going to the bathroom), something uncommon in her culture. She allowed herself to become excited at the opportunity of doing all the things, which she had been denied: the chance to study and to live alone, free from the shackles of war. When government officials, who spent almost a year dealing with her case, broke the news, they cried in sadness and frustration. She returned to Bethlehem shortly after.
Back behind the Wall that divides Israelis and Palestinians, Echlas continued to struggle against oppression, conflict, tension, and a lack of services for people living with disabilities. She speaks about disability issues at public events and each year publishes a calendar, filled with art depicting contemporary social and political issues.
When her mother passed away some years ago, she was devastated and retreated into herself. Her family is a constant source of strength and nourishment. Taking a sip of coffee, Echlas explains that she is fortunate to have such a supportive family, as many Palestinians living with a disability do not receive this support. She speaks with frustration about how some families are ashamed of their children who have a disability, “Some people with disabilities spend all their lives in one corner of the house never being in touch with anyone except their families who only see them as disabled.”
She has met many people with disabilities, especially women, who spend their lives rarely leaving their house. They never have the chance to make friends or get married. A look of sadness marks her face. I light her another cigarette, noticing that the packet is nearly empty.
Her new volunteer from Germany, a sociology student, enters the room announcing Echlas has a visitor; it is one of her Arabic language students. Determined to be independent, Echlas makes a living teaching Arabic to foreigners in Bethlehem. Echlas smiles at the young woman, revealing that in a short time, the two have adjusted to the rhythms of living together – 24 hours a day – in a refugee camp.
As I leave, Echlas’ phone rings. She hangs up quickly and says, “Make sure you don’t go near the other refugee camp on your way home. That was my nephew. People are protesting and soldiers are firing tear gas into the camp.”