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Cox’s Bazar is the home of more than 900,000 Rohingya people living in refugee camps, of whom an . We recently conducted 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. 鲍鱼tv 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.