AS A YOUNG girl, hunger was a constant in Rose’s life. It gnawed at her relentlessly, an emptiness that drained her strength. In her village in northern Uganda, where she lived as a child, the mango tree where she went to pick fruit symbolized hope – a means of both distracting and nourishing her five-year-old body. But one eventful day, that exercise of instilling hope became an episode she will never forget. A friend stepped on ordnance abandoned by the Lord’s Resistance Army, an armed rebel group.
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. She became an outsider, cut off from a 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, implying it was a waste of time and effort. 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 of this sort every day. The feeling of exclusion is compounded by the lack of opportunities and the woes of living in a conflict zone. Refugees with disabilities find it very challenging to overcome this combination of difficulties.
The World Humanitarian Summit, a U.N.-led process to rethink our global response to conflicts and natural disasters, has convened 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 core principle number three – “Leave no one behind” – needs to translate into action.
The leaders present at the summit should not only hear the voices of people with disabilities who have lived through crisis – they should listen. Really listen.
They must seek the wisdom of those like Rose, who never gave up her passion for learning and found help from a Catholic school for deaf children in northern Uganda where she could study sign language. After completing secondary school, she used her experiences to start an organization for women and girls who are deaf or have hearing difficulties.
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. She asked 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 at least some of the challenges having a disability creates, from 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 became more evident to me.
Imagine what is like when your village is attacked and your family abandons you because you cannot walk. Imagine how you would feel when others in a refugee camp get food and you go hungry because the distribution site is not accessible.
Reaching and aiding physically challenged people during conflict and displacement might appear a daunting task. But the path to including people with disabilities starts with simple steps. Before a humanitarian emergency occurs, consult people with disabilities, especially organizations led by them, to see how the response plan can be more inclusive. After all, people with disabilities have the best insight on 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 could also endorse the Charter on including people with disabilities in humanitarian response, which was created by nongovernmental organizations, U.N. agencies and countries 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 overlooking the plight of those who need help most. Rose 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.
