Burgess COMMENTARY

Peter Burgess

Disability in conflict zones: 'I told my wife to take the children and run' Being caught in a humanitarian crisis with a disability can lead to abandonment and neglect. How can we make humanitarian response more inclusive?

A child in a refugee camp near Bangui in 2013. Photograph: Sia Kambou/AFP/Getty Images

When the shooting started Simplice Lenguy told his wife to take their children and run. It was 5 December 2013, and the war in Central African Republic (CAR) had arrived on his doorstep. “I couldn’t go fast with my canes and I didn’t want them to wait for me,” says Simplice. “All our friends and relatives had already fled in fear.”

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Two hours later and Simplice was alone in his abandoned neighbourhood. “I was terrified. The fighting was increasing from all directions,” he remembers. “Eventually I couldn’t take it any more so I found a neighbour who carried me until he couldn’t go any further. I told him to abandon me. From there I went on myself, with my canes. When I reached the outskirts of the M’Poko camp in Bangui I collapsed from fear and exhaustion.”

For Simplice, like so many others with disability, it is abandonment and isolation that mark their experience of war. Last year, Human Rights Watch documented 96 disabled people who had been left alone in deserted villages in the wake of attacks in CAR – for days, weeks and sometimes months – with little water or food. Eleven had been killed.

But the situation did not ease once he had reached shelter. “The real suffering started when I got to the camp,” he says. “We disabled people were often unable to run to get food or to stand in line, so it was easy for us to be pushed to the side. For every three humanitarian deliveries we were lucky to get something at one. I saw disabled people dying of hunger out in the open without even a tarpaulin to put over them. It was like we weren’t considered to be people.”

“The situation is absurd,” says Catalina Devandas, UN special rapporteur on the rights of persons with disabilities. “We are trying to save lives but failing to understand that 15% of the world has a disability – often more in conflict situations – and they are not benefiting equally from humanitarian resources. They can end up being double victims.”

The adoption at the World Humanitarian Summit (WHS) of what Ban Ki-moon called a groundbreaking charter on disability in humanitarian response has offered some hope of progress. One of its commitments is to lift the barriers to accessing relief, protection and recovery support.

“It has given the issue greater visibility, particularly because it is developed through a unique partnership among governments, UN agencies and NGOs,” says Shantha Rau Barriga, director of disability rights at Human Rights Watch. “Whether it translates into real inclusion on the ground remains to be seen.” Wheels to the world: freeing children with disability in Uganda – in pictures View gallery

But for some, the WHS also symbolises how far these issues had been marginalised within the humanitarian community itself. “It was good to see events on disability included, but they were mostly just disabled people talking among themselves,” says Rose Achayo Obol, from the Network of African Women with Disabilities.

And ironically the WHS itself only had limited access for wheelchair users. “The fact that the WHS was not fully accessible for wheelchair users or people with sensory impairments, like most other UN events, makes you wonder how seriously disability issues are being taken at at the highest level,” says Devandas. Despite this, she remains positive the charter has potential to trigger huge positive change.

Simplice (in white Puma t-shirt) plays acoustic guitar with others in the M’Poko camp.

Simplice (in white Puma T-shirt) plays the guitar with others in the M’Poko camp. Photograph: Marcus Bleasdale for Human Rights Watch Improving data on disability is pivotal to building awareness and political will, says Aleema Shivji, UK director of Handicap International. “There is a stigma issue in the humanitarian industry. A lot of of the time there is the attitude that there ‘aren’t many disabled people’, or that ‘you can’t see them’. Although there is a growing awareness that they are disproportionately affected by disasters, because of the lack of data, disability often remains invisible.”

The idea that inclusion is too costly and complex is another huge challenge. “Aid organisations find it really scary, but it doesn’t need to be the case – there are so many simple things you can do,” says Shivji. “It could be that when you build a block of latrines in a refugee camp you make sure they are accessible. Or simply making sure you communicate health or evacuation information in more than one medium – using radio and posters, for example.”

The danger, however, is that inclusion without more understanding of disability could lead to one-size-fits-all solutions. “When people think of disability, they think of a wheelchair,” says Devandas. “While physical accessibility is important, we also need to pay attention to those with psychosocial, intellectual or sensory disabilities, and to the situation of women with disabilities … and nobody is really paying attention to them in crisis situations.”

Women with disabilities are particularly vulnerable in humanitarian emergencies, says Obol: “In the camp in Uganda where we work, gender-based violence, sexual exploitation and forced marriages are rampant.”

In Handicap International’s research on disability in humanitarian contexts (pdf), a third of women with disabilities reporting experiencing psychological, sexual or physical abuse.

Simplice (in orange t-shirt) continues to be a member of the Central African Republic national para basketball team.

Simplice (in orange T-shirt) is a member of the Central African Republic national para basketball team. Being on the team allows the disabled community to forget about the conflict, he says. Photograph: Marcus Bleasdale for Human Rights Watch

Whatever the solutions, the resounding message from many is that the starting point has to be representation. “The most important thing is to give disabled people a voice,” says Devandas. “We are the most vulnerable ones in emergencies and conflict. We are the ones left behind, and yet our participation is not taken into account when responses are defined or implemented.”

For Simplice, amplifying his voice was the only antidote to his situation. “I woke up one day and thought, ‘I have to do something’,” he says, reflecting on his decision to bring together a group of disabled people in the camp that included those who were deaf, blind or had lost limbs in the conflict. “At the height of the war we numbered 500 and it made us stronger – we could shout in unison. It allowed us to get the attention of humanitarians. We made sure people knew we were human beings.

“We started our own garden and began growing things. And we also started building hand tricycles for those in the group with difficulty walking,” he adds. “We did it in the spirit of deciding that life is not over, and this really gave me strength. I said to myself, ‘Yes I am disabled but I’m also human’. I deserve to eat and I deserve a say in my own life.”

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“We are the ones left behind, and yet we are not taken into account when responses are defined or implemented' Catalina Devandas