Don’t Leave Us Behind: Refugees with Disabilities in Humanitarian Response

refugees in Sudan being assisted by IOM staff

As a young girl, hunger was a constant in Rose’s life - it gnawed at her relentlessly, an emptiness that drained her strength. In Northern Uganda, the mango tree where she went to pick fruit was hope, something to distract and nourish her 5-year-old body. Then, suddenly, another child walked astray and the ammunition ordnance - abandoned by the Lord’s Resistance Army, an armed rebel group - exploded, and everything changed. 

In an instant Rose’s life transformed. She went from being a young refugee girl, indistinguishable from thousands of other children from Sudan, to an even more marginalized and invisible member of the community: a person with a disability. She survived, but the explosion left physical and emotional scars. For weeks Rose could not speak or hear, an outsider to her once familiar world. The pain and bleeding in her ears persisted, and she became deaf.

Humanitarian organizations to whom she reached out for support and even members of her own family said teaching people who are deaf was impossible, a waste of time. So for two years she remained out of school, helping her mother at home while her friends continued to learn. People made fun of Rose and did not understand her situation. Many people who are deaf experience discrimination like this every day. And when you add to that the problems of living in a conflict zone, the feeling of exclusion is compounded by a lack of opportunity. It is a combination that is difficult to overcome.

Despite these challenges, she never gave up a passion for learning, and found help from a Catholic school for deaf children in Northern Uganda where she could study in sign language. After completing secondary school, Rose used her own experiences to start an organization for women and girls who are deaf or have difficulties hearing.

Rose allowed me to tell her story because it  shows that having a disability does not mean your life is over - you can still achieve your dreams. Although she did ask me not to use her real name, because she wanted to keep the focus on the issue and not her personal achievements.

As a person who is legally blind and lives in New York, I understand some of the challenges having a disability creates. The hesitation of never knowing if now is the right moment to cross a street, or the frustration of not seeing signs at the supermarket. But it was not until I heard the stories of people with disabilities who have survived emergencies that the scope of these issues truly came into focus for me.

Imagine what it is like when an attack comes to your village and your family abandons you because you cannot walk. Think how you would feel when others in a refugee camp get food and you go hungry because the distribution site is not accessible.

Next week, the World Humanitarian Summit, a UN-led process to rethink our global response to conflicts and natural disasters, will convene in Istanbul. The summit has lofty goals - placing affected people at the center of humanitarian action and investing in local resources are described as "core principles."

As a Fellow with Human Rights Watch, I am hopeful the summit can help to address these challenges. But as a person with a disability, I am skeptical.

More than one billion people worldwide, or one in seven people, have disabilities. Yet at formal events or high-level speeches, people with disabilities receive one-line mentions alongside a dozen other commitments. If change is to happen, the rhetoric of "leave no one behind" needs to translate into action.

When world leaders arrive for the summit next week, they should not only hear the voices of people with disabilities who have lived through crisis - they should listen. Really listen.

The path to including people with disabilities starts with simple steps. Before a humanitarian emergency occurs, consult people with disabilities and the organizations led by them to see how the response plan can be more inclusive. After all, people with disabilities know best what we need. Since disability takes many forms, we should consult them all - including people with intellectual and psychosocial disabilities affecting their mental condition. Governments and humanitarian organizations can also endorse the Charter on including people with disabilities in humanitarian response, which was created by nongovernmental organizations, UN agencies, and States through an open, inclusive process.

Leaders gathered at the World Humanitarian Summit have a choice: to make real commitments to include the most marginalized populations, or to continue excluding those who most need help. Rose, the young woman from South Sudan, and thousands like her have not let conflict defeat them. World leaders should follow their example and do what it takes to make humanitarian response inclusive for all.

Photo by flickr user International Organization for Migration is licensed under CC BY-NC-ND 2.0.