“I don´t know why my child is like this. No one has ever explained to me”
“I don’t know why my child is like this. No one has ever explained to me”, says a young refugee mother to me while holding her three-year old child in her arms. A woman sitting next to her adds, “I was once sent to the hospital outside the settlement and they told me that my son was just lame.” Other parents who are all refugees start nodding, and confirming that they too have no knowledge about their children’s disabilities. As I am learning about their stories through an interpreter from the community, I keep wondering what it must feel like to have a child who clearly has special needs and there is no one to offer answers and guidance. It is hard to truly comprehend.
The majority of the children whose parents I am speaking with have cerebral palsy. It is a condition that has been known for years. In many cases, much can be done to improve the condition or at least minimise its deterioration over time. Yet, these refugee parents living in a settlement in northern Uganda know virtually nothing about their children´s condition. This reality is a result of the lack of social and structural recognition of their children’s special needs and access to information. There is a compelling need to address these obstacles as parents play a crucial role in helping their children with disabilities unlock their potential and become contributing members of their communities. They are the primary carers who spend most time with their children often with no regular contact with professionals. Therefore, they are best positioned to be the key providers of interventions and stimulations to enhance their children’s physical, cognitive and emotional health. Furthermore, their sincere motivation and interest makes them the best agents to advocate for their children’s rights and facilitate social change. Promoting their empowerment through access to information and support gives the parents a chance to gain control over their own lives and effectively support their children with special needs to live more fulfilled lives.
There are several reasons for the lack of knowledge and control that mark the reality these refugee parents live every day. Firstly, as the intensity of forced displacement is not showing signs of easing up, meeting the basic needs of refugees is becoming increasingly challenging. Consequently, the presence of certain groups in need of individualised support within refugee communities is often overlooked. Refugee children with disabilities represent one of these groups. Secondly, there is a lot of stigma and discrimination towards persons with disabilities present among refugee communities. As a result, families who care for one or more family members with disabilities encounter a lack of support from their extended relatives or wider community. Insufficient knowledge and disability awareness perpetuates superstition and fear of the unknown among refugee communities which leads to the families isolating their family members with disabilities further. Thirdly, even though refugee parents of children with disabilities have a desire to understand their children´s conditions and thus respond to their needs in the best way possible, they rarely possess the resources to access the right information. Travelling to a specialised centre or hospital that are far away from refugee settlements is a considerable expense that the majority of these families often reliant on food rations simply cannot afford. Accessing information through the internet may seem a good alternative as much information on different types of disabilities or sources of support can be found online. However, limited financial resources and access to technology, as well as the lack of reading ability, English-speaking skills or computer competences further prevent these parents from seeking and accessing crucial guidance and information about their children´s conditions.
“The power of knowing gives people more control, confidence and belief in their own capacity”
Access to information and support is not only an elementary condition to being able to make informed and dignified choices about one’s own life. In the world of disability, it can mean a staggering difference between a thriving child working their way to become as self-sufficient as possible and a child with very little prospects to discover and realise their potential. The power of knowing gives people more control, confidence and belief in their own capacity which in return fuels their empowerment and motivation to stand up for their own as well as their family’s well-being. Professionals across different fields have a role to play in ensuring that refugee families caring for a child with physical, cognitive, mental or sensory impairment are adequately equipped to respond to their needs. This includes acknowledging disability in refugee response policies, guidelines and financial projections, early mapping and identification of families in need of such support, raising awareness and advocacy and providing families with information, tools and skills to effectively care for their members with disabilities.
Undoubtedly, the ever-growing numbers of displaced people and continuously decreasing international humanitarian aid cause some of these areas of support for refugee children with disabilities to become neglected. However, access to information and guidance through which parents and families of children with disabilities can become agents of positive change and their own empowerment should not be one of them.
“I hope that at the end of this journey, refugee children with disabilities will have better prospects to live fulfilled lives and their parents will become the facilitators of their own empowerment and growth.”
Luckily, thanks to the generous support from our partner Comic Relief, we are soon to embark on a three-year journey of supporting refugee parents and their children with disabilities such as cerebral palsy or autism living in Uganda. We will work in close partnership with Cerebral Palsy and Autism Renaissance Organisation (CPARO) and a number of refugee-led community-based partner organisations with whom Xavier Project already collaborates in different locations. A locally-led approach is an essential feature of our efforts to promote community ownership and sustainable development. Through community-led solutions, we will be supporting parents caring for children with disabilities in their quest to become competent responders to their children’s needs and confident advocates for their rights and well-being. In addition, we will also cooperate with schools and other institutions to raise awareness and facilitate access to education for refugee children with special needs.
I hope that at the end of this journey, refugee children with disabilities will have better prospects to live fulfilled lives and their parents will become the facilitators of their own empowerment and growth. My confidence that this hope translates into reality grows stronger as I am observing the mum who was once told that her son was “just lame”. While she is hungrily absorbing every piece of information provided by my colleague – a cerebral palsy specialist, her face is lighting up with clarity, hope and strength. The determination in her eyes confirms my conviction that the work we have started is worthwhile continuing.
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