Chavia with members of the Cultural Forum for People with Special Needs in Syria, outside the House of Peace in Homs, 2011.
Chavia Ali is the 32-year-old chairwoman of the Cultural Forum for People with Special Needs in Syria and the most prominent activist fighting for the rights of the disabled in the Middle East. Attempting to uphold a semblance of basic humanitarian rights under Assad’s rule is risky business. On top of that, to start a civil rights NGO under Assad as a woman of Kurdish descent (which Chavia is) is basically to beg for a life sentence in prison.
Chavia has been wheelchair-bound ever since she suffered from paralytic polio as a baby, but this hasn’t stopped her from bulldosing her way through the impediments presented by the Ministry of Social Affairs and Labour, and constant threats from the secret police as she strives to make life more bearable for Syria’s disabled. She’s received national and international recognition for her work, and after years of thwarting her efforts, Assad’s regime realised a few years ago that it was in their own self-interest to use her good name to improve its image.
In 2010, Chavia’s organisation received funding through a trust fronted by Syria’s first lady, Asma al-Assad, with whom Chavia had discussed her plight on several occasions. The novelty of the regime’s slightly more open approach toward civil rights stirred the interest of international media, including the New York Times, who interviewed Chavia about the improbable collaboration. But within a year it became painfully obvious that the entire ordeal had been a dog-and-pony show of empty promises and unfulfilled assurances.
Before April 2011, when Assad’s army opened fire on peaceful protesters and civilians, Syria was home to approximately two million people with disabilities. When we spoke to Chavia in October, a few months after she had fled Aleppo for Sweden, she estimated that number could have steadily grown over the course of the civil war.
VICE: How difficult is it for disabled people to live in Syria?
Chavia Ali: People with disabilities are being left behind when buildings are evacuated; those who depend on iron lungs, for example, must rely on spare batteries during frequent power outages. Medicine is hard to come by, and soldiers have no regard for whether or not a person is disabled. My friend Adul is almost completely paralysed and can only move his head. He wanted to participate in the demonstrations in Aleppo, so he went out onto the street in his electric wheelchair. A policeman hit him in the face, and he fell to the ground. When two women came to help him up, they took Adul and the women to prison and locked them up for a month. They don’t care whether you’re a woman, a child or in a wheelchair. They’ll kill you if you’re against them.
Even before the conflict, I felt Syria was one of the worst countries to be disabled in. The government knows nothing about accessibility, and disabled people are treated as lesser beings. Instead of working toward including us in society and helping us get an education, we have been made dependent on charity. There are 514 organisations for the disabled in Syria, but none of them deal with disabled people’s rights. They give people bread and sometimes money, but they have no strategies for rights and development. Many people with disabilities in Syria cannot get an education because the government never made schools disability friendly.
Was there a particular incident that drove you to become an activist for the disabled?
I chose to study law at a university in Aleppo that had an elevator, which would enable me to attend lectures and classes. I had such high expectations, but on my first day, when I pressed the elevator button, I realised it was broken. A passerby told me it had been broken for at least ten years. The university staff kept giving me vague excuses [about fixing it], and months passed and nothing happened. Finally, I went to the office of a local politician, a man with enough power to fix my problem in the bat of an eye, and do you know what he told me? He said, “Why do you want to study and have a career in law when you can’t even move around?” I became so depressed I stayed in bed for two months, trying to figure out what to do with my life. Finally, I decided to stop focusing on my problem with this elevator and instead work to confront the problems in this society for people with disabilities. If we achieve democracy, we will finally be able to give more power to people with disabilities, like the right to vote. In the old Syria, we never had any of that.
And this was the impetus for you to establish the first organisation in Syria that focuses on the rights of the disabled?
Yes. Unfortunately, to this day I’m still the only person in Syria fighting for disabled people’s rights. For years, my father and the families of people with disabilities – those who believed in our work and wanted to help – funded everything. We’ve tried to change people’s prejudice against the disabled and teach people with disabilities to read and write and use the internet. There’s a law that says more than 4 percent of public jobs should go to people with disabilities, but it’s never been implemented. My dream was to make this law a reality.
How did you manage to get financial backing from Asma al-Assad?
It happened because I had become famous among international organisations for people with disabilities, and the first lady had heard about me through my work. The fund she controls put together a scheme to fund cultural projects, my association applied and they decided work with us. It was supposed to last for two years, but we stopped after one because I didn’t accept how they wanted to turn everything into a media show about how great they are and how much they’re doing. When I told them I wanted to use the money to do real work and solve real problems, they stopped paying us. Then, when the revolution began, they started calling me every week because they were in desperate need of arranging public activities that would show they were doing something good, as a way of saying, “Look, we don’t have problems in Syria.” They begged me, “Please do this project with us. Imagine all the headlines you’ll get for disabled people’s rights.” I told them, “People are dying, and you want me to talk to the press about how caring you are? Do you think I’m crazy?”
Chavia with Syria’s first lady, Asma al-Assad, at the Open Hands Initiative’s Youth Ability Summit in Damascus, August 2010.
What is Asma al-Assad like in person?
She is a good speaker, well educated, kind and smart, but I think she’s a simple person. She would always ask a lot of questions, but it never felt like she was giving you anything in return other than a nod.
How was your first meeting with her?
I received a call on my cell phone from the first lady’s office saying she wanted to meet me the following day in Damascus. She asked me questions about my work and ideas for change, and how it could benefit cultural life in Syria. We spoke for an hour. Ten days later, I received another call saying a car would pick me up at 7AM and take me to meet the first lady, who would be in Aleppo. I had never in my life imagined I’d ride in such a beautiful vehicle because we only ever used to see the president in that type of car. This time she wanted to know about my life and family. I asked her some questions about her background and education too. I do remember asking her whether there were any kids with disabilities in her son’s school, because I wanted to push the subject of inclusion and make her think about how important she could be in implementing such changes in Syria. At last she said, “Say thank you to your mother and father.” I asked why, and she said, “Because they have given us such a beautiful girl for Syria.”
Do you think that she actually wanted to help your cause, or did she have another agenda?
She didn’t do anything for the disabled; all that was just for show. But I want to say something, to be honest, about Asma. This woman helped me with something very important. Before meeting her I constantly had the secret police after me because I am Kurdish and the head of an association. It was a war against my work. I asked Asma whether she could use her power to tell them to leave me in peace. She promised to do her best, and since that day I haven’t had any problems with the secret police. I must say that she protected me. Once I bumped into her at a dinner, and when she saw me, she came up and kissed and hugged me as if I were her friend. I don’t know why she liked me so much. I didn’t meet Asma ever again after the uprising had started; however, when her people called me and tried to persuade me to start up the project again, I asked them how the first lady was responding to so many civilians being killed. They just told me, “She’s sad.” And that was the last I heard from them.
Before our interview, you told me that during your attempted collaboration with Asma, your cousin was arrested by the secret police. Do you think this was because he was fighting for the rights of Kurds in Syria while you were tackling a less politically sensitive subject?
That’s just the government’s way of working. In my case, they hoped that by paying me to take part in their work – giving me an opportunity – I would forget about my family and my cousin. In Syria it’s very common for one brother to be in the army while the other joins the revolution. Or one brother will work for the government while the other is put in prison for defending his rights. A lot of people in my family are politicians fighting for Kurdish rights.
Chavia at the Young Leaders Visitors Program organised by the Swedish Institute, 2012.
You were based in Aleppo until recently, and I’m sure you’ve experienced more than your fair share of fallout from the conflict.
I haven’t been home for five months because it became impossible to stay. I really didn’t want to leave because I wanted to show the people I work with that I am there, with them and for them. I was helping a lot of refugees from other cities, and I knew that if I left they’d be afraid because they would know the situation had gotten very bad.
One night, my uncle called to warn me that Assad’s troops would enter Aleppo the next morning and that I had to leave immediately. My assistant and my mum helped me pack a few things, and we drove off to Ayn al-Arab, the village where I was born. The next day, one of the biggest battles of Aleppo took place on my street. Because I have polio and need special food, and a special toilet and bed – my life is special everything – I became very ill after two months of sleeping on people’s couches. Finally, I couldn’t do it anymore and decided to go back to Aleppo, even if it meant dying in my home. That night there was a battle on my street once again, so I had no option but to drive back to the village and wait for a friend to help me cross into Turkey. I was afraid that if they checked my name at the border I would have big problems, because I had refused to collaborate with the government. Luckily, no one looked me up. Once I got to Turkey, I applied for a visa to Sweden.
Do you feel that the people of Aleppo have been empowered by the revolution?
There was definitely a sense of power and freedom. I think what happened around a year and eight months ago was great, because we need freedom and change. But the problem is that civilians – namely women and children – are paying the bill. When a bomb explodes and kills 20, 30 or 100 people, a lot of them don’t know why they are dying. The kids, when they grow up, will wonder, “Why did my mother die? Why did my father die? Why did I lose my hand? Why did I lose my leg?” I think that even if we do get a new Syria we will need a lot of years to deal with these traumas. We now have a war that is far from a revolution. Maybe it will evolve into an international war or stay a civil war, I don’t know. The government, with the support of Russia, China, and Iran, is killing people, and at the same time, the people who started the revolution are not here anymore. I believe a number of foreign militiamen, some of them extremists, have entered the Free Syrian Army,and they are killing civilians too.
Now that you’ve been in Sweden for a few months, can you elaborate on the differences in how the disabled are treated here compared to Syria?
I can’t even begin to give you an answer. My organisation had done a lot of work over the years, before the war. In Aleppo, for instance, we had made four schools accessible to people with disabilities. On the subway, on my way to a meeting with the Swedish Institute, I was looking at all the young children on their way to school. It made me think about what is happening today in Syria with schools: Some are homes for refugees; others have been destroyed completely by bombings, sometimes killing the children inside.
I wasn’t able to stop crying for a very long time because I can’t help comparing what I see here in Sweden with what I remember. I can’t sleep. I have many nightmares, and during the day I get flashbacks of things I wish that, one day, I will be able to forget. But then I think of how many children have seen even more horrors than me. How will they be able to have a new life after having seen their father or mother killed? Nine months ago, in Aleppo, I helped out when a busload of people arrived, including small kids who had lost limbs. We didn’t know where their families were or whether they were still alive. The youngest was three years old. We sent them to the orphanage, but the building is very close to a government building so it is not very safe. I dread to think what has happened to those children.
For an overview of the issues that have fueled the conflict in Syria, we recommend reading "Road to Ruin", our condensed timeline of Syrian history, and "The VICE Guide to Syria", a crash course on the country's geopolitical, cultural and religious complexities.