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Out from the shadows: Tackling the stigma of disability in refugee communities

2022-11-30T10:29:05+00:00

A Rohingya refugee camp in Cox's Bazar, Bangladesh. Mrittika Deb Purba/�鶹Լ�� Media Action Bangladesh

Cox’s Bazar is the home of more than 900,000 Rohingya people living in refugee camps, of whom an estimated 12% are people with disabilities. We recently conducted research with people with disabilities living in the camps, to understand what barriers they face in accessing information, participating in decision-making activities, making complaints and giving feedback to the humanitarian agencies working there.

“Invisible” people in Rohingya camps

During our fieldwork, we realised how hard it was to find people with disabilities to talk to in the Rohingya camps. It was difficult to find people with disabilities in public spaces – as if they were invisible - and when asking other camp residents where we might find people with disabilities, we had to use disparaging terms for them to understand who we meant, as they are often referred to only by their impairments. We also sought support from humanitarian practitioners working with this group, to help us identify potential research participants.

Once we found participants to speak to, we observed that most of their shelters were located either up steep hills, or beside drains. And the roads to reach their shelters were typically unstable and uneven. We wondered: if we are struggling to get to them on foot, then how are people with a physical disability managing to get around? Are they able to move from their shelters? As it was the rainy season, another question came into our minds: if there was a landslide, how fast would people with disabilities be alerted to the danger, and would they be able to move when the roads are slippery and muddy? When we reached their shelters, we noticed that often families would keep women with disabilities (especially those with hearing, vision and learning impairments) ‘out of sight’ in dark parts of the shelter, with little air, which was not the case for men with disabilities. We asked ourselves – why is it that women with disabilities are kept hidden from view by their families?

Barriers aggravate their “invisible” condition

Our research identified that people with disabilities face a series of barriers in accessing information, beginning at home. They often do not know where to get information, which makes them dependent on their family members or caregivers. And even if they know where to go, they are often not permitted to go out alone, as family members fear they will injure themselves on the slippery mud or steep slopes - even if they do not have a physical disability and are able to walk themselves. Instead, family members may try to carry them themselves, or seek assistance from neighbours to carry them; however, neighbours may charge for this help, which families may struggle to afford.

Stigma is another barrier to going out: people with disabilities and their families fear being humiliated by other community members, and have experienced abuse, from being calling discriminatory names to having stones thrown at them. Because of this stigma and abuse, family members are often reluctant to accompany people with disabilities outside, and sometimes people with disabilities may hide themselves from the community.

To minimise these barriers, organisations working to support people with disabilities have mobile teams and door-to-door services to reach people with disabilities with information. However, our research identified further barriers. The mobile teams are often staffed by a limited number of community volunteers, who may be unable to cover the whole camp, and so do not reach people with disabilities who live in more remote areas. When they do reach people’s shelters, they may ask family members or caregivers about the problems or concerns of the person with disabilities, rather than checking with the person themselves. When we asked practitioners working for organisations supporting people with disabilities about this, they explained that family members often have mechanisms to communicate with their disabled family member - for example, if that person is hearing impaired and does not use international sign language. However, this excuse is not relevant for someone with a disability which is not communication related.

Negative experiences at sessions

These barriers, throughout the year, constrain people with disabilities from participating in any meetings in the camps, excluding them from decision-making processes. We did find that some research participants had attended awareness-raising sessions – even though they were organised far from their homes. But some said their experiences were so negative that they were unwilling to attend further meetings.

A 32-year-old woman with a vision impairment told us:

“When we arrived at the meeting, the volunteer said that the meeting was not for me and I requested her to let me enter as I cannot go back alone. She let me enter and asked me to sit in a corner of the room. When they start meeting, I was having problems hearing clearly so I asked my neighbour what she just said. And that time, the community volunteer shouted at me for interrupting her discussion. Her behaviour made me sad and after that day, I never went to any meetings."

Afraid to ask questions

We heard these kinds of examples from both male and female participants with physical, visual, and hearing impairments. These experiences affected their desire to participate and be heard. They told us they often don’t ask questions, because everything is new to them, and they lack confidence asking questions of those they perceive as more educated. Some said they feel shy talking in front of people without disabilities.

We have learned from our research that we all need to increase our efforts to be more inclusive in the way that we communicate with these ‘invisible people’ to ensure that they have the accessible information they need and are able to participate in decision-making forums. Humanitarian agencies are scaling their support for people with disabilities in the camps. But now, in the fifth year of the Rohingya refugee crisis, more effort is required to understand their experiences, fears and needs, and address their barriers, so that they feel confident and empowered to communicate with, and participate in, the wider community.

A fully inclusive response

Humanitarian actors should take steps to make their response fully inclusive: ensuring a smooth and accessible information flow within the camps so that people with disabilities can obtain information without difficulty; supporting experts so they are better able to communicate with people with disabilities; focusing on sensitising and educating communities to reduce stigma against people with disabilities; supporting people with disabilities to participate meaningfully in meetings; and mentoring caregivers to be a strong support rather than a barrier to participation. �鶹Լ�� Media Action could play a vital role in this work: through developing and sharing relevant content which is accessible for all, and features people with disabilities, and training humanitarian staff on interpersonal communication skills and inclusion, to ensure they are reaching everyone.

Why communication needs to be at the heart of humanitarian response

2018-08-31T08:00:00+00:00

“One organisation delivers blankets; then another also delivers blankets. One organisation distributes rice, and then another also distributes rice. Talking of blankets, for example, I’ve got six or seven new blankets in my home.”

These words, spoken by a Nepali man sitting on a pile of rubble after the 2015 earthquake, have stayed with me as a reminder of what needs to change in the global approach to humanitarian response.

“Instead of giving us such things, they could give us what we need, like water, for example”, echoed a woman. “We asked particularly for water pipes and they didn’t give us those. We have to go far away with a basket to collect water.”

At the root of this absurd situation were a number of key problems.

Among them, the perpetual issues of coordination and professionalism. When lots of agencies are planning to help people, it’s clear that there needs to be a basic discussion on which agency does what, and where. In fairness, things have come a long way in the aid sector since high-profile humanitarian response fiascos of the 90s, such as the aftermath of the Rwanda genocide, led to an increasing professionalisation of aid and steadily better coordination. In all big humanitarian responses, there are now frequent coordination meetings where these important conversations happen, and do make a difference. But there are still gaps, as we saw in Nepal.

The other problem was about not listening to the people you are trying to help.

It has taken the aid world a long time to realise that there might be value in putting the needs and views of affected people at the heart of decision-making.

Listening to people can be time-consuming, especially if they don’t speak your language, and it gets all the more inconvenient when what you hear does not match with your preconceived ideas about what you should be doing. It’s far easier to make assumptions about what to give people, dole out whatever you previously promised your funder you would deliver, and measure success in terms of total numbers of blankets and bags of rice distributed.

But how can we hope to really help the people we are serving if we don’t find out what they need?

This issue is at the heart of the still-emerging field of what is increasingly referred to as Communication, Community Engagement and Accountability (CCEA). The past few years have seen big strides towards recognising that crisis-affected people need timely humanitarian information, are able to participate in decisions that affect them, and have access to responsive complaints mechanisms. Key international policies and guidelines (including the Transformative Agenda, the Grand Bargain and the Core Humanitarian Standard) include strong reference to this.

What is needed now is a more systematic application of these standards, more people with the skillsets to implement them and - underpinning it all – more dedicated funding. But the humanitarian community has learned a lot and there are encouraging examples of progress.

Putting theory into practice

The United Nations describes the Rohingya emergency as currently the “fastest-growing refugee crisis”. Hundreds of thousands of Rohingya people have fled their homes in Myanmar and now find themselves in vast, sprawling camps over the border in Cox’s Bazar, Bangladesh.

Early assessments found, as usual, that communication, feedback and accountability mechanisms in the camps had numerous shortcomings. Since those assessments, �鶹Լ�� Media Action has been among the agencies who have received funding for community engagement and accountability activities and we now see a number of areas where things are clearly working far better than usual.

Firstly, CCEA is very firmly on the radar of most responding agencies and funders as an integral part of the response. It is no longer seen as an optional add-on and there is a lot of effort taking place, even if the results are not always perfect. Secondly, coordination structures for CCEA were already present when the crisis escalated so there wasn’t the usual scramble of who should be at the table.

Thirdly, there are many aid workers with the skills and knowledge to undertake this kind of work.

There is no doubt that greater awareness and momentum at a global level is leading to change on the ground. Local-level efforts – in particular preparedness – can also make a contribution.

In 2013 �鶹Լ�� Media Action began work in Bangladesh (funded by the UK Department for International Development) to better prepare media and aid agencies to communicate with affected people in emergencies. Among the outcomes was the creation of a working group for Communication with Communities, chaired by the Bangladesh Government’s Department of Disaster Management. With a fresh grant through the global Communicating with Disaster-Affected Communities (CDAC) Network, this later evolved into Shongjog – a national platform focused on Communication with Communities.

All this preparatory work helped build relationships between agencies and key individuals, raised the profile of CCEA, established coordination mechanisms (including in Cox’s Bazar) and also upskilled local staff on CCEA, with many hundreds of professionals trained in humanitarian communication and accountability. The majority of them are now working on this response.

If humanitarian assistance is to be effective, all aspects of the response require preparedness: From where will shelter materials be sourced? How will aid reach the affected people? Who will deliver it? Where will food and medical supplies (and not to mention all those blankets) be stocked while they await distribution? Preparedness for communication is no exception – training, planning, awareness-raising and relationship building are a must before an emergency hits.

And when disaster strikes, all those efforts must translate into action.

As part of our work responding to the Rohingya crisis, �鶹Լ�� Media Action leads a consortium with Internews and Translators without Borders to provide a Common Service for Community Engagement and Accountability. In practice, this means helping provide practical, local-language information to Rohingya people and host communities, giving them space to ask questions and raise concerns, as well as gathering and analysing feedback which we share with all aid actors via What Matters? - a regular bulletin offering an overview of Rohingya and host communities’ priority concerns as they evolve.

The hope is that agencies will continue to use findings from the latter to inform their work. A simple piece of feedback can have a significant effect on improving lives. For example, one of the bulletins described a concern that pregnant women are not getting enough nutritious food, such as vegetables. Now it’s over to the aid agencies to either provide that food if it’s indeed lacking, or give pregnant women information on what nutritious options are available and how to access them.

And that is perhaps the most critical point: action. People can become rapidly disillusioned if they try using the plethora of suggestion boxes and feedback hotlines, but nothing happens as a result. If we ask for people's trust, and if we want to help them to the best of our ability, we must not only listen to communities but also act on what we hear.

Jacqueline Dalton is a Senior Producer and Trainer for �鶹Լ�� Media Action, specialising in humanitarian communication and community engagement.

What matters? The Rohingya crisis, one year on.

2018-08-24T16:17:27+00:00

Originally posted here by Dhaka Tribune on August 17th, 2018.

Imagine that you’re in charge of the response to the Rohingya emergency right now. Daunting, right? For a start, you’ve got to make sure that hundreds of thousands of people get the basic services they need. By itself, that’s a huge logistical and operational challenge. But at least your ‘to do’ list might seem pretty obvious: people need food, water, toilets, a place to sleep, medicine. It might be big in scale, but it maybe doesn’t feel so complicated.

Now throw in some of the quirks of Cox’s Bazar: the hilly terrain which makes it difficult to move around; the threat of storms and landslides; and the uncertainty about how long people will stay in the area. All these things make it more difficult for you to provide support to the Rohingya community. But you’re a committed, resourceful individual, so you make the best plan you can and start your task.

That’s when some unexpected obstacles might appear. You’ve planned to distribute rice, daal and oil – but no-one is taking the daal. You’re helping people move their houses away from landslide-prone areas – but no-one wants to go. You’re providing vaccines to protect people from disease – but many of them are left unused.

What’s going on here?

If only there was a way to find out why your logical and well-planned activities haven’t worked so well. Well, of course, there is: by listening to the people affected by a crisis, it’s pretty straightforward to get back on track and avoid these sorts of situations in the first place.

Since the beginning of the Rohingya emergency, �鶹Լ�� Media Action has been helping humanitarian responders to listen more closely to the communities they are supporting. Working with lots of partners, we’ve found many different ways to hear what is being said – both in the camps themselves and in the towns and villages surrounding them.

Whether it’s through radio phone-ins, walk-in centres collecting face-to-face community feedback or direct discussions with affected people, there are now lots of channels through which people can raise their voice and express their worries and concerns. And when all this information – collected by many different relief organisations – is analysed, we can build up a good picture of what people think and need.

We’ve discovered, for example, that most Rohingya people don’t like the taste of daal; that some are worried about a lack of water and health services in the newer, more remote areas of the camps; and that there are concerns that having a vaccination might make people sick. We can also see how different groups of people have different worries. Women are much more concerned about sanitation and hygiene problems in the camp, for example. Some villages within the host community also have very specific concerns – about fishing rights, for example.

With this type of information, relief organisations can be much more targeted in how they support the community: making sure that what they provide is what is actually needed; addressing concerns as they arise; and making sure that the activities they provide are designed with affected people in mind.

It’s not easy, of course. Collecting community feedback in the first place is difficult: Rohingya people speak a different language from most of the relief workers and most are not used to being asked for their opinion. Even once data is collected, some organisations are reluctant to share information which could contain some criticisms of their work. And even once we understand how the community feels and what they are worried about, changing relief plans that were made weeks or months in advance can be a difficult task.

We think it’s critically important, though, which is why we at �鶹Լ�� Media Action will keep making sure that all the relief workers and volunteers have access to the very best information from the communities themselves. It is, after all, those who are living day-to-day in camps and host communities across Cox’s Bazar who are the ones who best understand their own situation and what can be done to improve it.

Richard Lace is the Country Director for �鶹Լ�� Media Action in Bangladesh.

Regular summaries of community feedback related to the Rohingya response is published in the What Matters? bulletin. The work described in this article is a joint �鶹Լ�� Media Action initiative with Internews and Translators without Borders. It is delivered in partnership with IOM and is funded by the UK Department for International Development (DFID).