I met Mary Ann at Lacor Hospital’s guest house, in Uganda. She is a river in flood, I get lost when she speaks…it’s a weird mix of American, Acholi, and smiles. When I asked her how she is learning so many words in Acholi I found out that she’s spending most of her time in villages, among families and communities. Mary Ann is a researcher from the US, doing qualitative research in Gulu District about children with disabilities, their families and the barriers they are facing. 9 months of interviews at homes with parents and caregivers: that is why she is learning Acholi, just one of the many things that she is learning, spending her time visiting families with a child affected by any type of limited physical mobility, ranging from Down to blind kids. However, when she joins families at their places she is not alone: Mary Ann met by chance Jennifer, a certified boda-boda driver, single mother with 2 kids, and they have been working together for months. “She is a really good mum, and she is my counsellor”: Jennifer knows how to go into the community, and helps her in reducing the distance with the families.
How do families receive you?
You know, people in Uganda are extremely friendly, kind and welcoming. What we should pay attention to is how they perceive us, rather than how they receive us: whites are often seen as those that are here to help us, to bring us some type of aid. I am a student, a researcher, and the purpose of my work here is hard to understand for many families, therefore we always have first to clarify this point, which might even be misleading.
And how do families receive their disabled children?
Firstly, the sense of community: they support one another, and if for any reason a mother can’t be there with the child for some time, neighbors and friends are usually there to replace her and take care of her child. However, the stigma of disability is still affecting communities and families: discrimination, shame, families who are not able to accept it, asking themselves “How could I generate such a child?”, even coming to the point of abandoning disabled children. Actually, I am realizing day by day that these cases are the exception, while usually the family, and the community as a consequence, love them.
You are detecting all barriers which prevent disabled children from enjoying a life which is similar to that of their friends with a complete physical mobility: which are the main barriers affecting their daily life?
There are many, much more similar to the ones that disabled people have to overcome in the majority of developed countries.
The main barrier is for sure the financial one: lack of money represents a high barrier between families and access to drugs, to therapies, and also to school. Education is another crucial barrier: access to schools is a challenge for many families in Uganda, and even more for disabled children, who should often attend equipped schools placed far from their villages and need special services. Currently, there is an attempt mainly in urban areas as Gulu Municipality, to help families: many schools are becoming more and more inclusive, and there is a specific training ongoing for teachers, to increase the number of those able to deal with disabled students and therefore the number of inclusive schools. Finally, another face of the medal is education for families: while we are used to the concept of patient empowerment, meaning an always greater involvement of the patient (of the family, in this case) who knows everything about his disease even before meeting a doctor, this is not the case here. Many families don’t even know what a disability is, nor what it is going to become in the future: they often ask themselves what did cause it, “whose fault is it”, rather than “what should we do?”. Even once they have realized and accepted the disability, they should be educated about the treatments: if they don’t know where to bring their child, they can’t do it, despite their willingness.
You have made 30 interviews so far, and you are going to achieve 50 by the end of the project: are there some episodes which you were particularly impressed by?
Of course, there are many. I’ll tell you two of them. The first one is the history of a family where the disability was condemned: the father could not accept his child, as if it was someone’s fault, and he abandoned the entire family. Often the fault of disabilities is attributed to the mothers, who physically created the child, but it is not always the case: I knew of histories where maternal families called back their daughters because of children’s disabilities, encouraging them to abandon the family.
However, I want to tell you the second history, which depicts the majority of situations I met: this is the history of a family whose child was severely injured while riding a boda with his mother, at an age of less than 1 year. After admission, they amputated his leg some months ago. While a was visiting them, I thought that an accident might occur wherever in the world, thus making this situation much closer to our lives than I could expect: a family where the father is an engineer, the mother is a farmer, and suddenly they found themselves living with a disabled baby. I asked them what concerns they have about their child, how do they live their daily life now, and they simply replied: we just look for the best possible for him. We want him to go to school, to treat his leg with physiotherapy and to avoid infections in his wounds, that is why she is going 4 times a week to Lacor with the baby. “How do you feel about him?” “We love all our children, but we want special things for him, we want him to live the best life possible”.
Legal policies and laws in Uganda are nowadays supporting families, reducing barriers and making daily life accessible for many disabled children, although there are gaps in implementation across different rural and urban areas. “However-Mary Ann points out-what really matters is the family: they are the core of the community, the heart of these children’s life, and I am very surprised to see how different from the past decades is their approach, how proud they are of their children, how willing they are to make their life as happy as possible”.