As our team is wrapping up another fieldwork phase here in Kenya, having successfully completed assessments and 32 in-depth interviews in two low-resource settings with caregivers of disabled children (mostly mothers) over the last couple of weeks, it’s time to reflect on some of the things we have learned from the caregivers about their experiences of caring for a disabled child in an environment of scarcity.
Since we last were here, tragically, several of the disabled children we had met on our previous field-visits have died, and one boy simply has “vanished”. No one knows where he is, he just never came back from playing outside.
Caring for a disabled child can be highly strenuous and stressful. But the complexity of caring for a disabled child in environments of extreme scarcity seems infinitely higher, and the mothers’ everyday life struggles, by their own accounts, are never-ending: blamed or even abandoned by their husbands and sometimes by their own families for giving birth to a disabled child, these mothers care for their severely disabled children in simple metal-roofed houses without proper electricity, without running water, without any supportive equipment or affordable health care, while simultaneously looking after their four or five other healthy children. At best, they can earn some money by selling fruits, perhaps, or by doing some casual labour, but often they cannot leave their disabled children to go out and earn a living. More often than not, their disabled children cannot attend school, as education for children with special needs is too expensive, or the children need to be ‘clean’ so as to be admitted to regular schools – an unaffordable luxury for the caregivers, who cannot cover the costs for diapers.
In addition to the lack of material and financial resources, what transpires clearly from the interviews is the social isolation and stigmatization frequently faced by these caregivers and their children: disabilities are highly stigmatized in both locations, as they are in many other parts of East Africa. Many community members perceive disability as a punishment from God, or as the result of a curse, for doing wrong or someone wishing ill on the disabled child’s family. Mostly, the mothers are blamed for it – by their husbands, by their in-laws, and often even by their own families. Disabilities are understood as communicable diseases, and hence as highly ‘contagious’. Consequently, disabled children are often kept hidden indoors, out of sight from neighbours and other community members, for fear of stigmatization and to keep them sheltered from emotional, physical and sexual harm and abuse by the community. The disabled children are not allowed to play with other children, as other parents are afraid their child might catch the same disability. Indeed, one mother tells us that she is not even allowed to put up her laundry on the communal washing-line, as the neighbours fear their children might develop the same disability as her child.
In these environments of scarcity, for caregivers, small care decisions can quickly turn into big ethical dilemmas: should they spend money on basic medication to stop the child having seizures, or use the money to feed their four other children who are healthy? Should they go out and work so as to earn money to feed and dress the four healthy children, while leaving the disabled child unattended locked indoors at home, in danger of being hurt in one of the many fires plaguing the community, or being harmed by intruders (we know of at least one instance where a severely disabled girl, who had been locked indoors, was raped by an intruder while her mother was away at work)? Should the pneumonia of the disabled child be treated in the main hospital, with the bus fare and the medication taking up the entire monthly salary that would otherwise have paid the meals and school fees for the other children?
One day during our fieldtrip, on the way to a village school in a rural, mountainous region – a dusty, and arid area – one of the health workers whispers to me that the village we are going to visit has the reputation of “being cursed”, because of its many disabled children. Indeed, the head-teacher of the local village school tells me that around one fifth of all the children at the school have some sort of impairment, physically or mentally, and that he thinks there are many more disabled children hidden away by their families in their houses and not allowed to come to school. I’m being told that a priest has been called some time ago to investigate the nature of this “curse”, and that, apparently, the priest came to the same conclusion as the villagers – namely, that indeed this village had been cursed, and that there is not very much else to be done, other than saying Mass and to pray.
As I listen to the stories of the caregivers of disabled children in this village, some of whom have more than one disabled child to look after, it becomes clear to me that there is indeed a “curse” on this village. But it seems to me a “curse” of a very different nature – not a ‘supernatural’ one: it is the curse of poverty that seems to have this village in its iron grip. Indeed, as we continue to listen to the caregivers’ stories, our team learns that parents often don’t immunize their children, due to a lack of education and a lack of understanding of the necessity of immunisation. We also learn that the mothers tend to give birth in their houses, without trained assistants attending the birth. If labour is prolonged, there is very little that can be done, as the nearest dispensary with a nurse is around ten kilometers away on foot or motorbike and requires traversing a river. During rainy season, the villagers are often cut off for days from the dispensary, meaning that in the case of an emergency, no medical support is available. And prolonged droughts often mean bad harvests that can lead to malnourishment among expectant mothers and their children.
To me, it seems very clear that there are no ‘supernatural forces’ at work here, but that these are circumstances created by man entirely, by political and structural forces that perpetuate inequality and keep causing ill-health and destitution in this region. Indeed, most of the mothers we talk to seem to be aware very early on that there is “something wrong” with their child, as they put it, but they can’t afford the money for the motorbike and matatu fare to go to the nearest hospital, let alone pay for medication. With the result that perfectly treatable conditions like neonatal jaundice, rickets, malaria and epilepsy go untreated, with often devastating effects on the children.
And yet, despite their suffering and the often enormous pressure exerted on them by their in-laws and their own families to abandon their disabled children, against all odds, these caregivers have decided to stay with their children, to love them and to care for them, come what may.
So it falls to us, those bearing witness, to not just stand by, but to help educate, raise awareness about disability and its causes, and to train health workers so as to cater to the needs of these children and their caregivers, both medically and psychologically. This, to me, seems the way forward to provide these caregivers with the support they so desperately need in caring for their children. This, to me, seems the course to take to ensure that these disabled children are safe, to ensure that they receive the health care provision and the education they need. It seems to me the only way to prevent this curse -the curse of poverty – from striking again, and from affecting future generations.