An interview with Alinafe Chisalunda Kusate (Malawi) and Juliet Magyan (Ghana) about the care for children with neurological disabilities, about stigma and shame and about the role of church and religion. Alinafe and Juliet are serving in their home countries with Enablement Foundation, which is based in Utrecht and works on Community Based Rehabilitation and Disability Inclusive Development as two roads leading to the same goal: realizing societies in which people with disabilities like any other person participate fully and are enabled to reach their full potential.
What does Enablement do and what is Community Based Rehabilitation and Disability Inclusive Development?
Juliet: For us in Ghana it’s about bringing services to communities that have little or no resources. It’s about bringing help to families that have neuro-developmental conditions in particular. Because if you look at persons with disabilities, there is support for somebody who is physically challenged – you can go to a hospital or an organization and have access to a wheelchair. However, when your child has a neurological condition, such as cerebral palsy or autism or Down syndrome, it’s very different, because there is no medical solution for that child. In the support of Enablement Foundation for our work, our focus is on a target group for whom there is no simple or immediate solution to their challenges. Yet, their problems are very real and have a profound impact on both the children and their families—ultimately influencing national development. When these communities, caregivers, or parents are marginalized, and unable to work due to caregiver responsibilities, it creates a ripple effect on the entire community’s development. We see a constant cycle between poverty and disability: the more severe a child’s disability, the greater the financial burden on the family, as parents often cannot leave their child to seek employment.
“We see a constant cycle between poverty and disability: the more severe a child’s disability, the greater the financial burden on the family, as parents often cannot leave their child to seek employment.”
So that’s what Enablement is doing in Ghana: we are bringing services right into the communities. In most of these communities we do not have the rehabilitation personnel there. In Ghana, for instance, we have trained over 70 occupational therapists. At the moment, in Ghana, we have less than 30, because we train these personnel, and then they leave the country to other places. And so if you have only 30 rehabilitation professionals who are particularly occupational therapists, you can imagine the impact on the entire population. And these people are stationed in major cities. So if you go to remote areas where I mostly work, there are no rehabilitation personnel and people are just resigned to their fate, and that’s what we want to do as Enablement: bring services into these low resource communities, particularly for children that have neurological conditions.
Alinafe, you work in a hospital, so is your work different?
Alinafe: Yes, I work in a hospital in southern Malawi. At this hospital, we realized that there are a lot of children with cerebral palsy and also other disabilities. So we looked at the risk factors causing the cerebral palsy, because these were often not given attention. Even the health workers didn’t know how to deal with this condition. Only the rehabilitation personnel that are dealing with it. We noticed that there are a lot of things that we are missing in these children, like feeding problems or epilepsy. Our program is now targeting, first of all, the identification of these children right from birth, and also awareness both with the healthcare workers and with the community and the parents. We now have an outreach program whereby we have a center outside the hospital, a multidisciplinary clinic for cerebral palsy children. In that center, right there in the community, we have the rehabilitation personnel, we have nutritionists, we have the medical people, and we also add the aspect of health education to the parents. So at the end of the day, they’re getting all these services at once, without moving from one place to another at different days, which is very costly for them. We are tackling all those problems at once. In doing so, we’ll be able to teach the parents what this condition is and what caused it (The commonest cause of cerebral palsy is when a child is distressed at birth, e.g. lack of oxygen. Also some infections can predispose the child to this condition, like cerebral malaria, jaundice or meningitis).
In this way we are also dealing with the stigma in the community, because sometimes the parents are blamed for using the child for rituals: ‘that’s why this child was born like this’. So they’re always blaming themselves. Sometimes they don’t know what, why, how am I going to get help? Some of them think the child needs surgery to recover. We’re trying to let them know that this is a condition that the child is going to live with for life. We also work with the community stakeholders, for example chiefs, religious leaders or teachers, so that they know that these children are there and they need our help. To show them that the children must not be neglected and to deal with the stigma. To clear their minds that there are causes of this condition, and it’s for life, and they have to help them in the community as much as they can.
So both of you are working community based? What does that mean?
Alinafe: One example is that these children need a lot of assistive devices, like wheelchairs. It has been difficult to get some of these devices. So now we are working with local carpenters, for example, in the communities, to fabricate them so that we can give the appropriate devices to the children. Another example is about nutrition. We are working on food preparations because some children have difficulty swallowing, and as a result, what they get is just porridge made of one ingredient, which is maize flour. This results in malnutrition. Now we also working on food recipes where we can make different food groups that are locally available. How do you make them in a way that this child will be able to swallow them? We’re teaching these parents how to prepare this food right there in the communities.
You are talking about the local community, the chiefs, the leaders of the community. What is the relevance of the religious leaders in the community. How can you work together on awareness with them?
Alinafe: These people are like gatekeepers in the community. They are being respected in the communities. Once they are given awareness about these conditions, they are better able to help these patients and their families. The problem is that there is a lot of stigma around these conditions. If the leaders understand that the parents did nothing wrong to have this disabled child, the blame game stops. They can help the rest of the community understand that they must not bring more burden to these families by segregating them, but they need to respect them. People often leave the children in a corner and don’t want to associate with them. So the mothers get excluded from other people and feel isolated: ‘if they see me with my child, other people might think that I did something wrong with my child.’ Some people don’t even want the community to know that they have this child, so they lock them up in the house. That way, the child is denied the services that they might benefit from.
I suppose it’s not easy to change concepts and ideas about shame. You’ll probably find that just medical information is not enough to convince people about their preconceived ideas?
Alinafe: It’s culture, so it’s been embedded in them for quite a long time. We reach out to chiefs and teachers. For example, some of these children have cognitive impairments, and it is difficult for them to follow education. But there are other children that are very sharp, if given a chance, but teachers might send them away. So it’s so important for us to work with the teachers to give these children a chance. We also reach out to the traditional doctors, so that if a parent comes to them saying: ‘can you heal my child’, they should know ‘this is a condition that I was told about – I should refer the child to the right care and not bother the child and the parents’. In the hospital the midwives should be able to recognize the features of cerebral palsy or neurological disability, so that we start dealing with these children as early as possible.
Juliet, in Ghana you work with churches as partners?
Juliet: Recently, we started working with the Church of Pentecost. The church of Pentecost is one of those old churches in Ghana who are so well established that they are literally everywhere. They have a sense of community because in each area you will find one of these churches at walking distance. You can see that over time they have become more disability conscious, and you can see that even in the design of the church: they have made things more accessible for persons with disabilities. And quite recently they established an arm of the church, called ‘the ministry to persons with disabilities’, and they do outreaches into communities. For the most part they focus on the visually impaired, the deaf, on physically challenged people – they try to get them into schools and get them devices. That is fantastic, because I don’t know of any other church in Ghana that has given attention to persons with disabilities. I appreciate that, because as a Christian (I’m a Presbyterian) I would love that my church would do that as well. But quite recently, we decided to work with them, saying that it’s great that you are doing all this for the physically challenged, but there is also this group of people that is always left behind, who nobody pays attention to, but their struggles are immense. Therefore, we started a pilot with them where we are looking at children (and their caregivers) that have neuro-disabilities. In the past we worked a lot with children with cerebral palsy, but in this particular project we are expanding. Because if I am going into a community and I ask caregivers to bring in their children, with a focus on cerebral palsy, I then ask myself: what is that mother who has a child with autism going to do? She has nowhere else to go.’ Now the advantage of the church is that it has volunteers within their structure. These volunteers see it as their service to the church. They are volunteering in that ministry and are doing a lot of community mobilization anyway. So we are capitalizing on the human resource and the structure within the church. We mobilize and train these volunteers: ‘it’s great that you’ve been looking out for persons with disabilities within a certain framework, but we want to introduce you to these other people who are also in your community.’
Why is it that they are overlooked?
Juliet: Because those people are self-stigmatized. There is a lot of cultural belief around having a child with a certain neurological condition. You are seen as ‘you’ve done something wrong, it’s a curse.’ If you go out into society and you want to sit in a bus, nobody wants to sit by you, because there is a feeling that it’s contagious. Especially for a woman who hasn’t given birth before: ‘if I sit by you, I might as well have a child with disability.’ These beliefs run deep, and these mums are aware of the situation. It gets tiring to go out when everybody is staring at you and making you feel like you have done something wrong, your child is weird and cursed. So over time these people keep to themselves, because it is easier for them. But then we are aware of the implications of that self-isolation. And because religion is so deeply rooted in our culture, why not harness on that energy, why not ride on the coattails of a religious organization that is willing to put their foot where their mouth is? They are willing to do something about it already. Can’t we capitalize on that? And so that’s what we’ve started doing. We have trained some of the volunteers in specific areas, and we’ve taught them how to recognize these children. We’ve taught them how to approach the caregivers, because the approach is very important. How you talk to a mom who has a child with disability isn’t the same way you talk to a mom with a typical child. The end goal is that the church will sustain parent support groups that we establish. So as a medic, I come in to do the mobilization. We create these groups, and that is where the church comes in to provide shelter for these families, a place where they can belong. And that’s regardless of their faith. So within the Pentecost Church the program is open to everybody in the community, it doesn’t matter whether you attend the church, whether you’re a Muslim or a traditionalist. The program does not discriminate.
“Because religion is so deeply rooted in our culture, why not harness on that energy, why not ride on the coattails of a religious organization that is willing to put their foot where their mouth is?”
But we want the church to take ownership of the people within the community and the real challenges that they have, because the program is holistic. We’re looking at an approach that takes care of as many domains as possible. We’ve had talks with the elders and the leadership of the church, and so we are hoping that the church will begin to preach inclusion right from the pulpit, as well as take active steps into helping these women. A lot of churches have counseling departments, and we find that our group of women need a lot of counseling, so that should be the role of the church as well: to provide counseling support and psychological support to these women, and with the resources that they have, also provide necessary interventions. I remember in our last interaction, we had people who needed a certain level of medical care, and the church is able to fund the provision of such things. That’s what we are hoping, that collaboratively, the church would see the potential to do more and to see how they can be agents of change within this community of women. And we were pleasantly surprised. We thought we’re going to meet just 20 caregivers in the community, and we ended up meeting 70. That showed us that the volunteers are on board and understand where we want to go with this, and the church is backing us in this. It’s a pilot, but we are seeing that it could have potential to make a huge impact across the country, since the church is everywhere in Ghana, right?
But the church, of course, is not free from those cultural misconceptions or stigmatizations?
Juliet: That’s why we had to educate even the pastors. The church has different levels of leadership. So we had to speak to pastors. We’re speaking to the elders. We’re speaking to the women’s group. We’re speaking to the men’s group and even at a children’s level we’re beginning to preach inclusion. You need to target different spheres within the church so that people understand. Because we already have a culture of inclusion, especially for people with physical disabilities, it wasn’t a totally alien concept to members within the church. I think that foundation made our work easier. And so within the confines of the church, there’s inclusion. But it’s when these women go outside of the church of Pentecost, that they experience a lot of stigma.
Why is it especially women?
Juliet: These are stories that the mothers tell me in a lot of situations: the men feel after the birth of a child like this: there is nothing like this in my family, so it must be from your family. And so the men tend to just leave the women to deal with the situation when it comes to disability, particularly in neuro-conditions. Primarily in the African context, childcare is the responsibility of the woman more than the man.
Alinafe: It’s the same in Malawi. The responsibility of children is in the hands of the mother. The father would say: ‘in my family there’s never been somebody like this, so it has to be your responsibility. Maybe your parents want to bring rituals on this child. I can’t stay here.’ That means they’re leaving this child with the mother who is not earning. This mother and her parents are the ones that will be responsible for taking care of this child. But because they’re always taking care of this child, they don’t have earnings, and it brings a lot of poverty into the family. So the poorer they are, the more unwelcome they are in the in the community. And then even the mother herself may leave this child with a grandmother and travel abroad or somewhere to work. So it’s a lot of issues that are happening and a lot of stigma attached to it.
How could Enablement Foundation be of help to the Christian organizations in our network, that might not have started thinking about these issues, or maybe they have, but they don’t have the tools? I saw there’s an app that could be used by local workers. Is that for specialists?
Juliet: The app is not for specialists. It’s designed to help field workers in communities. You do not need to be a university graduate or a medical specialist in order to use the app. I think as Enablement Foundation, we have a lot to offer to faith based organizations. There are a lot of lessons we’re learning from the project with the Church of Pentecost. We’re going to see an impact of big data. Those things will be relevant for other Christian organizations who may want to work in similar contexts. We have toolkits that have been developed over time. I think, there’s a lot of value in sharing the knowledge and sharing our current practices, because the need is great. When you speak of persons with disability, many people think of vision and hearing, the disabilities you can easily observe, because you find them around. But this particular group of people that we are concerned about are often hidden, but there’s a lot of scope to help them. I think, where Enablement gives added value is in that particular group of people that tend to be left behind. You find them everywhere. And the problems, especially within the African context, are very similar where-ever you go. The basic issues are stigmatization, poverty, proper rehab services, proper connections with stakeholders. The situations are very similar. And so can you replicate it across different contexts.
Picture (Enablement Foundation): left is Juliet, right is Alinafe