Refugee caretakers of children with disabilities need our support

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By Yusraf Nagujja

Posted  Tuesday, December 3  2013 at  02:00

Looking after a child or young person with a disability is challenging. When one adds that responsibility to being a refugee, in a country where one barely has a social network for support and no clear means of survival, life becomes a living hell for both the caretaker and the PWD being cared for. These caregivers are more vulnerable as they face a risk of experiencing xenophobia as well as discrimination on grounds related to disability.

As we commemorate the International Day of PWDs today, we should remember the refugee caregivers of the PWDs, who largely and in most cases solely and in isolation bear the responsibility of caring for their children, spouses or other family members with disabilities.

The World Health Organisation estimates that between 15 per cent of the world’s population live with disabilities (WHO, 2011). The most recent world disaster report estimates the total number of forced migrants to be at 72.6 million (International Federation of Red Cross, 2012) and as such, it can be assumed that 10.8 million of the world’s displaced persons live with some form of disability.

With increase in factors like conflicts, natural disasters, road accidents, disabling illness and high costs of healthcare, it is clear that disability is on the rise.

Very minimal efforts have been made to support the refugee caregivers of young persons with disabilities. Most times their concerns have remained hidden and neglected.

Resources are barely allocated to support them, and they hardly benefit from public health facilities as they are limited by language barrier, lack of information, and lack of transport to such facilities. Those who manage to reach the medical facilities fail to meet the costs that are involved such as paying for required medical tests and examinations.

They have fallen prey to conmen in public facilities who fleece them for money in exchange of fake medical documents and referrals. Many, due to lack of social networks lack where to leave their children while engaging in productive work, yet the typical work of these refugee parents involves moving from place to place.

They cannot afford the house helps as they themselves struggle to make ends meet. They hence continue to comprise of Uganda’s poorest households. They are not assimilating within the existing structures for PWDs in Uganda since their challenges present uniquely to those of Ugandan counterparts.

Apart from finances, emotional and psychological needs of caretakers are usually intentionally or unintentionally ignored. Family and community members may out rightly exclude and reject the parents and their child with disability or may continue to ridicule them with degrading and demeaning words.

The parents of children with disabilities experience shock when they deliver the child, come in knowledge of their child’s disability, or their child suddenly develops a disability. If supported, the parent will transition through the other stages like denial, anger, and then acceptance.

However, the common scenario in Uganda for the refugees is that many remain unsupported and get trapped in one of the stages, never fully processing the trauma. They do stay in prolonged episodes of shock, anger, disappointment, bitterness, guilt, shame and they displace these negative energies on to the children.

Other parents with time give in to the pressures and fears of stigma and cope by consciously or unconsciously eliminating the child out of their lives. That is why it is not uncommon to find caretakers treating the young people under their care in an inhumane way.

My position is not to shift focus away from the PWDs, but to bring to the attention the need to support these key persons if any change is to happen in the lives of young people with disabilities under their care.

I believe all stakeholders at community, national and international level can play a role in supporting these caregivers.

Ms Nagujja is a disability rights advocate at Refugee Law Project, School of Law - Makerere University.