A functioning everyday life creates hope and faith in the future
The Swedish National Association for Disabled Children and Young People (RBU) is running a joint project with the International Federation for Spina Bifida and Hydrocephalus (IF) in Tanzania. Together they have supported families with children suffering from spina bifida to build their own organisation that can operate in society and demand care, help and schooling for the children.
When a woman in Tanzania gives birth to a child with a disability, she is branded. Many are thrown out of the home, others are able to stay but are forced to live separately from the other members of the household.
– She and her child have brought the evil eye on us, said an old woman in Dar Es Salaam about her son’s wife. My husband has cancer and it’s her fault.
The family had just seen the birth of a girl with spina bifida, a congenital disorder that causes mobility issues and problems controlling the bladder, amongst other things.
Reducing the families’ isolation
One successful way to reach the families is to teach them to catheterise their children. Children with spina bifida are unable to control their urination and need other ways to empty their bladder in order to protect their kidneys.
In addition, children who leak smell and that is frowned upon in African society, just as it is in Sweden.
If a child in Tanzania smells of urine, he or she is prevented from playing with other children, the family becomes excluded and nobody wants to have anything to do with them. They cannot go to church or the mosque, and have no place among other people.
Clean intermittent catheterisation (CIC), a method of using a catheter or tube to empty the bladder at a particular time of day, is therefore one way into the heart of the families and the lonely mothers. The mothers are trained to catheterise their children, and when the children are older they are able to catheterise themselves.
The organisation provides mutual support
When the children no longer leak, but can keep it in, the families feel a sense of hope. The parents can work and get involved in the organisation, even if the long distances and poor family finances make it difficult to attend all the meetings.
However, it is the combination of making life work again and belonging to their own organisation that lifts the parents out of hopelessness and despondency. When they see their children perk up and be accepted and they realise they have the right to demand more than just survival, they gain the power to move forward.
Giving each other support and encouragement
This is something we have seen develop over the 10 years of contact with families in Tanzania. Initially, they were controlled entirely by doctors and administrators at the hospitals. They willingly put themselves in the hands of the authorities and did not have any trust in themselves. We came down regularly and encouraged them to form their own group and take back control. To begin with, they needed a great deal of support, because they knew nothing about running an organization.
They are still not fully independent, but they now have their own agenda. They have a board in every local association, and the appointees are chosen by the members themselves. As well as holding minuted meetings, they take responsibility for planning their budget and carrying out planned activities. They deal with the situation as it stands, with regard to care providers and authorities.
It is a beautiful thing to see people grow. Those of us who have followed the organisation have had that privilege, and it has been incredibly rewarding. Their courage and love for their children, despite exclusion and poverty, is deeply moving.
Text and photo: Renée Höglin