Barriers to participation of displaced persons with disabilities in the Nakivale Refugee Settlement in Uganda
Courtesy of the author.
Setting the context
In 2010, the Conclusion on Refugees with Disabilities and Other Persons with Disabilities was adopted by the UNHCR. It calls for the protection and inclusion of persons with disabilities in refugee and displacement contexts, and is intended to foster respect for the rights and the dignity of refugees with disabilities and promote their participation in society. The document also criticises unintentional or deliberate exclusion as equally discriminatory.
Nevertheless, for many countries and organisations, as well as academics, displaced persons with disabilities remain ‘too often invisible, too often forgotten and too often overlooked’.
Against this backdrop, I conducted research at the Nakivale refugee settlement in Southern Uganda with eight asylum seekers and six refugees, all living with sensory or mobility impairments, in order to better understand the types of barriers to participation that displaced persons with disabilities are confronted with. The Nakivale refugee settlement was established in 1968 and is operated by UNHCR and the Office of the Prime Minister, together with several implementing partners. The refugees living in the settlement are primarily from the Democratic Republic of Congo, Burundi and Somalia.
As a result of Uganda’s self-reliance model, refugees are allocated a plot of land in the settlements to live and farm on. While they wait for their asylum claims to be processed and land to be allocated to them, many asylum seekers live temporarily in the Nakivale reception centre.
An insight into the diverse lived realities of displaced persons with disabilities
Despite having access to basic necessities through UNHCR and other organisations, most participants expressed feelings of hopelessness, invisibility and exclusion. In the words of one participant, an older woman named Asma (all the names are pseudonyms): ‘No one cares for us, they only care for the children’.
Bakome expressed a similar sentiment: ‘They don’t care about limb people’. (Research participants with mobility impairments commonly identified themselves as ‘limb’.)
Overall, participants did not identify their impairment as the main barrier to their participation in society, but stated that it was the absence of services addressing the specific needs of displaced persons with disabilities that prevented them from fully participating in society. Diric, who walks on crutches but wishes for an orthopaedic leg, stated: ‘I’m disabled but I can do more, but here is not the suitable place, this place causes problems’.
Although some participants reported experiencing discrimination from within the refugee community, most found actual or perceived discrimination in service provision to be more important. Referring to the aid organisations, Juvenal said: ‘they failed to help me because of who I am’.
In the reception centre, the sleeping and sanitary facilities are not disability-friendly, due to a lack of budget and space. Emil complained about the conditions and felt as if he only received help to barely survive: ‘We don’t even get soap, we smell bad (…) this is not good for human beings, but they don’t care’. In addition, Bakome pointed out the difficulties that non-disability friendly latrines pose: ‘To go to the toilet, I’m limb, I don’t have a leg, it’s a catastrophe’.
Displaced persons with disabilities also face additional problems when they are relocated to the Nakivale refugee settlement from the reception centre. For example, they often find it challenging to build their own houses on the plot of land provided for them, and their specific needs are usually not considered regarding the choice of the location of their plot. Additionally, other research participants, such as Frederic and Gabriel, worried that they would not be able to live a self-reliant life in the settlement: ‘We are like children without parents. What happens to us after settlement?’, ‘How can we survive outside?’.
Another barrier is access to adequate health services within the settlement. While primary health care is available, disability-specific health care and rehabilitation services are lacking. Furthermore, transport to medical facilities poses a problem. In most cases, persons with disabilities only received drugs, because specialised treatment was either not available, or only available in urban centres far from the camp. Additionally, the provision of assistive devices is very limited and wait times are long.
Unclear and complicated communication and service channels are also an obstacle for persons with disabilities. They are often sent from one organisation to another, and are not made adequately aware of the opportunities that are open to persons with disabilities, or of the rights and services that they can claim. Harry, who was in acute pain and needed a new orthosis, had been referred to the hospital in the next city two months ago but was unable to access transportation due to conflicting information given by two different aid organisations: ‘They don’t practice what they promise …I’m very tired, I’ve tried many times, I’m hopeless for this.’
Adequate livelihood support also poses a challenge. Most refugees living in the Nakivale settlement are expected to farm the plot of land they are given by the Ugandan government, but most of the research participants find agricultural work challenging due to their mobility impairments. Despite this, they emphasised their willingness and ability to receive training or support for a less physical kind of work. Research participants staying in the reception centre wished to be taught how to do crafts, to produce soap, to fix shoes, to use machines and computers. Gabriel stressed: ‘People here are okay in their head, they can be taught’.
Besides training, many research participants asked for support to start or continue a business. Ignace, who taught English before becoming a refugee, commented: ‘I can do any job, I can drive, teach, interpret, I can do a business, I can do a lot’.
Above all, many research participants emphasised their agency and capabilities, such as Celestin: ‘I am able to do something in my life’. In addition, with a desire to be seen, heard and represented, a group of displaced persons with disabilities formed an informal self-help group. Unfortunately, after a few meetings, the members felt discouraged as it did not lead to any change.
The findings of this research show that while displaced persons with disabilities in the Nakivale refugee settlement aspire to a dignified, self-reliant and participatory life, they remain an overlooked group, are not treated as right bearers, and the value of their contribution to society is often not acknowledged.
By creating an inclusive environment and by removing disabling structures, displaced persons with disabilities can exercise their agency, pursue livelihood strategies, fully participate and contribute to refugee and host communities. Respectful targeted assistance and social support services can help to restore or maintain persons with disabilities’ feelings of dignity and build upon their agency and capabilities.
There is a pressing need for cooperation with (inter)national donors and aid agencies that support the participation of persons with disabilities; starting with an increased provision of adequate assistive devices and targeted livelihood support programmes, as well as awareness and sensitisation programmes in the community and for aid workers, and creating and/or strengthening representative organisations by and for persons with disabilities.
There is also an urgent need for more funding and research to be directed at displaced persons with disabilities. This research urges policymakers, aid agencies and researchers all over the world to pay more attention to the needs of displaced persons with disabilities, to take them into account during decision making and to support their full social, economic and civic participation.
This article is an abbreviated version of a research report. The research was conducted as part of the author’s Master’s programme and the content and opinions expressed in the report are those of the author and do not reflect the views of her affiliated or current organisations.
Julia Söhnholz is a graduate of the Erasmus Mundus Joint Master Programme in Migration and Intercultural Relations (https://www.emmir.org/) and currently works as a Trainee Programme Officer with World Vision Germany. She conducted this research project as part of her Master Programme’s praxis module in the Nakivale Refugee Settlement in Uganda. You can reach Julia at email@example.com.