During focus group discussions with women in IDP camps in Western Darfur – as part of a larger research project on vulnerability[i] – several women highlighted the increased difficulties persons with disabilities faced throughout the displacement process, beginning with their initial flight from their villages. For those with disabilities, their journeys had taken on average almost twice as long as other, non-disabled villagers, putting them at greater risk of further attack and insecurity along the route to safety. This was largely due to mobility or transportation difficulties. For example, one of the disabled women interviewed had to flee from her village with her husband, also disabled, and their three children, taking as many belongings as they could carry; however, they had to take turns to share their one mobility tricycle between them, thus significantly delaying their journey. Another elderly woman told of how, because of difficulties with walking, her flight from the janjaweed had taken more than five days, rather than the one or two days it had taken her fellow villagers, and she had to hide many times along the way for fear of further attacks.
None of the women interviewed mentioned receiving any assistance from neighbours or fellow villagers during their flight, though they did sometimes receive help once they were in the camps. Some of the help, such as collecting water and firewood, was undertaken by younger family members to assist those who could not collect the firewood themselves, thus putting these family members at an increased risk of attacks outside the camp. Some households set up food distribution mechanisms whereby one representative gathers vouchers from a series of households and collects all their supplies which are then divided up. These are helpful to some degree but only in the case of those registered with food distribution programmes, usually in camps, and it depends on the goodwill of friends and neighbours to ensure the full food ration is handed over. In many instances this goodwill is not forthcoming.
One small group of women with disabilities ended up, in part because of their particularly destitute status, in what can loosely be termed a ‘segregated’ camp, alongside other extremely vulnerable people, including older adults and persons with leprosy. However, they were not included in any of the formal registration programmes and thus were excluded from programmes that specifically target ‘extremely vulnerable individuals’ (EVIs), despite being clearly in need of extra support.
The situation for most of the adults and children with disabilities in Darfur is especially challenging. In general, the attitude of non-disabled Darfurians to adults and children with disabilities is that of charity, based on religious beliefs. Prior to the conflict, adults and children with disabilities were frequently beneficiaries of zakat, the Islamic system of giving to those most in need. However, since the conflict and the large influx of humanitarian aid, the zakat system has largely fallen into disuse, leaving many people with disabilities in a vulnerable and precarious situation, unable to call upon traditional means of support and unable to access the new, limited systems of support that were supposed to be available in the camps but were often missing or fragmented.
In Darfur, for most of the displaced persons with disabilities, there is a chronic need for livelihoods, food and welfare support. For many persons with disabilities, their main source of income comes from begging in the local market place. Furthermore, we found that in a camp the presence of a person with disabilities within the household can put extra strain not only on finances but also on family coping strategies. The traditional extended family system that could support persons with disabilities is often significantly reduced, with only close relatives being available nearby to continue to help and provide any support needed. In some cases families are separated during flight to a place of safety, sometimes by accident but often because a decision was made that – for the welfare of all other members of the family who must flee quickly and survive in the unknown surroundings of a camp – the person with a disability must be left behind.
Identification and registration
In order to assist those seen as especially in need, many agencies identify EVIs in order to provide targeted assistance with food and non-food items and programme delivery. This category varies according to the agency but usually includes orphans and unaccompanied children, female-headed households, older people, people with disabilities and people with mental health problems.
In Darfur as elsewhere, many other factors compound vulnerability, including gender and geographical location. In the areas where we were undertaking research, local disabled peoples organisations (DPOs) were also used to assist with the identification of EVIs, but these local DPOs are often under-staffed, over-stretched and under-resourced, as they try to effectively reach all persons with disabilities in need, often in camps some distance away with unstable and changing populations.
The fact that most of the persons with disabilities in the camps interviewed for this project seemed to be falling through the cracks highlights the need to improve the process by which persons with disabilities are tracked and registered by relief agencies. Official registration can benefit persons with disabilities in Darfur in a number of different ways, including by offering access to additional humanitarian aid, a reduction in healthcare bills and free schooling.
It is debatable to what extent these benefits can actually be realised in the current context and whether persons with disabilities perceive registration to be beneficial. In theory, the process of registration eventually links to the Ministry of Social Welfare and is primarily undertaken by local DPOs in the field. However, the extent to which ministries actually take any responsibility for the welfare of persons with disabilities appears to be limited, with most services provided by organisations such as the ICRC. Local DPOs have limited capacity for advocacy or awareness-raising campaigns and overall receive little external assistance as much of their previous support came from disability and development agencies that no longer operate in the region. Most support now is in-kind, such as the provision of assistive devices for a limited number of individuals fortunate enough to come to the attention of the system.
In other chronic crisis situations, persons with disabilities often remain in camps or temporary settlements for years, long after most or all of the other non-disabled camp residents have been relocated or have left. While many persons with disabilities will find their own solutions to their displacement (as others in the camps do), the challenge is what should be done about those who cannot find alternatives to such camps.
For any of the three options – return, reintegration or resettlement – refugees and IDPs with disabilities face a number of challenges. If return is an option, there may be conditions attached such as having to demonstrate the ability to rebuild one’s house, an option not always available to persons with disabilities. Reintegration may pose specific challenges for persons with disabilities, who may face increased discrimination and exclusions and loss of social support, particularly outside their own community. Finally, resettlement generally comes with a number of conditions attached which may act against persons with disabilities, for example a cap on medical treatment expenses. This leads to the very real problems of camps becoming de facto ‘welfare camps’.
We have not yet got to this situation in Darfur but it is time for agencies and others focused on long-term durable solutions for all refugees and IDPs to give serious thought and attention to persons with disabilities.
Maria Kett (email@example.com) is assistant director and Jean-Francois Trani (firstname.lastname@example.org) is senior research associate at the Leonard Cheshire Disability and Inclusive Development Centre, University College London (http://www.ucl.ac.uk/lc-ccr/). Maria Kett is the focal point for disability in the current Sphere revision process http://www.sphereproject.org/content/view/530/302/lang.english/
The Darfur study was co-funded by UNICEF and Leonard Cheshire Disability and carried out in partnership with Intersos.
Disability in standards and guidelines
The UN Convention on the Rights of Persons with Disabilities (CRPD), which came into force in May 2008, covers situations of risk and emergency (Article 11) but does not specifically include displacement as a situation of concern. This may reflect the fact that the CRPD reaffirms already-existing human rights legislation, such as the 1951 Refugee Convention, but does so with a specific focus on disabilities. Whilst all human rights legislation takes non-discrimination as the basis for its implementation, the Refugee Convention only specifically mentions disability in Article 24 on Labour Legislation and Social Security, which states that all refugees are entitled to the same social security rights as all citizens of the country.
The Guiding Principles on Internal Displacement mention disability specifically in Principle 4, which outlines the principle of non-discrimination of any kind, as well as highlighting how: “Certain internally displaced persons, such as children, especially unaccompanied minors, expectant mothers, mothers with young children, female heads of household, persons with disabilities and elderly persons, shall be entitled to protection and assistance required by their condition and to treatment which takes into account their special needs.” And Principle 19 states: “All wounded and sick internally displaced persons as well as those with disabilities shall receive, to the fullest extent practicable and with the least possible delay, the medical care and attention they require, without distinction on any grounds other than medical ones. When necessary, internally displaced persons shall have access to psychological and social services.”
While the Refugee Convention focuses on entitlements (to welfare support), the Guiding Principles focus more on care and protection. However, more recently the UNHCR Handbook for the Protection of Internally Displaced Persons emphasises the need to ensure the protection of persons with disabilities and focuses on the inclusion of persons with disabilities, with particular emphasis on gender, violence and health as these relate to persons with disabilities.[ii] Meanwhile, in the current revision of the Sphere Handbook, disability – along with other key areas including gender, older people and children – is being mainstreamed from the start of the revision process to ensure sustained inclusion.[iii]
[i] ‘Report on affected and excluded vulnerable children in Southern West Darfur’ Dr Jean-Francois Trani and Dr Maria Kett, Leonard Cheshire Disability and Inclusive Development Centre, University College London.
[iii] http://www.sphereproject.org/content/view/530/302/lang,english/ Maria Kett is the focal point for disability in the current revision process.