I was recently asked a series of questions about the work of Disability Africa by the Gambian Press. So just in case you don't get your Gambian daily . . .
1.Do you come from a background of working in disability in the UK?
I trained as a secondary school teacher and by coincidence, after a couple of years teaching, the local authority chose my school to include a special unit for disabled children. It meant that I and all my colleagues started to include disabled children in our lessons. It was much easier than many of us had thought and the whole scheme was a great success. This was my first experience of working with disabled children - it was 1978 and I was only 23 years old!
2.What was it that stimulated your interest in disabled people in the first place?
It was this experience of teaching disabled students in my classes that first stimulated my interest in the ideas around Inclusion. It was a real-life, practical demonstration of how such things were not only possible, but actually quite easy.
3.Why did you decide to transfer your affections to Africa? How did all that start?
I left teaching after 7 years and took the job of director of a charity which specialised in providing play and leisure opportunities for disabled children. I stayed with this organisation for 13 years. My next job was developing projects in African countries and although they were not specifically related to disability, my past 20+ years working with disabled children meant that wherever I went in Africa, I always asked what people did for disabled children in their countries. I always got the same answer, "Nothing!" After three years during which I visited Uganda, Mozambique, Zambia and South Africa, I decided that perhaps I should set up Disability Africa as a charity to see if we could transfer our experiences to help disabled children here.
4.What do see as some of the challenges to working in this field in Africa generally and in The Gambia specifically?
Wherever I have been in Africa, (and this is probably true all over the world) the main issue is the same - the stigma and lack of understanding about disabled children is the largest barrier to their development. People often think that the only problem is the difficulties caused by the child's actual impairment, or poverty but it isn't! It is the negative traditional beliefs which exist all over Africa, and the shame which families are made to feel, which result in thousands of disabled children being hidden away.
This isolation leads to wide-ranging deprivation of a disabled child's basic human rights - they have very little social interaction even in their own compounds, they have no education or health care and often they are even deprived of food. Sometimes the children are tied up, and in some cases they are even killed.
Of course, the lack of infrastructure does present problems, but people in African countries have always overcome this by helping each other. It is the African sense of community and the way in which you help each other which always impresses any visitor from Europe or America.
So community support is your 'front line' of action when anyone needs help - everybody helps their neighbour - and in this way you manage very well without lots of things that we have in Europe. Actually, your communities work so much better than ours do because of this!
BUT if you have a disabled child, this vital, first line of support is usually missing. We have heard so many parents say that when they ask for help for their disabled child a neighbour will say, "Throw this one out", "get rid of them", even "kill the child - it would be better!" So suddenly, families are left without the key support which everyone else relies on. This is devastating for the child and family and results in so much suffering for the child and especially the mother. No mother wants to see her child suffer.
5.I am particularly referring to some of the attitudes towards disability that you must confront in your work in Gunjur.
The other serious difficulty which results from prejudice towards disabled people is that families of disabled children are very shy to bring their disabled children to receive support from our programmes. The World Health Organisation estimates that there are approximately 1,200 disabled children in Gunjur (population 23,000) – we have been working in this community for over two years and have only found 71 disabled children! We need to find ways to create confidence in the families of disabled children so that they feel able to bring them to us.
6.How do you begin to change people's attitudes to disability when they maybe so entrenched?
Firstly, we recognise that no civilised person wants this situation to exist for disabled children. I have met so many good people in African countries, who when they realise the difficulties faced by disabled young people and their families, they immediately want to help. So we work with these people.
Already in The Gambia, we have found so many good people and organisations who want to help. Our main partner is TARUD in Gunjur - they have conducted so many successful community development programmes but they had no experience of working with disabled children. When we asked them to help us, they immediately made staff and resources available so that we could start a programme in Gunjur - we call it the Gunjur Inclusion Project.
Our “Template for Action” is based on a simple, two-step approach:
- We raise awareness of the needs and Rights of disabled children and young people in their community, and . . .
- We work in partnership with local people to establish relevant services to meet those needs.
Support is through a range of services to improve practical outcomes for disabled young people as identified by local community stakeholders such as parents and the village elders and other NGOs such as Gambian Federation for the Disabled.
Local involvement ensures we are providing the relevant support and training to develop the necessary infrastructure and skills for long-term project management, implementation and financial independence.
Inclusion is at the centre of everything we do. We must ensure that we are addressing stigma and helping to bring down the destructive, negative attitudes and behaviours which families, and the whole community, traditionally hold – these shifts in cultural beliefs will take more than one generation to fully achieve so we have to be committed to long-term engagement. We believe in "Inclusive Community Development" ie fostering programmes which highlight the Rights and needs of disabled young people within their communities and thereby create and mobilise sustainable local support.
Our work draws on the aims, recommendations and values expressed in major international conventions: The WHO World Report on Disability 2011, Millennium Development Goals, the UN Convention on the Rights of Persons with Disabilities and most recently the 2013 UN Report: A New Global Partnership.
7.What other challenges are there?
A big problem is what I call "Tiredness with Toubabs"*. So many toubabs have come to Africa; we promise much, we throw money around for a couple of years and then we go. It is so irresponsible. The worst effect is that, quite reasonably, people in Africa have grown cynical and tired of this behaviour. No-one believes a toubab when he says he wants to create a sustainable project - people will make a show of agreeing, but everyone really knows that he will be gone in three years, all the funding will have gone and everyone working on the project will be looking for another job! And so it goes on - projects come and go but very little stays and grows.
We have to find a way to overcome this “tiredness with Toubabs" - it will take time and a firm commitment on the part of all partners to really establish the rights skills and structures - including sustainable sources of local income - whether this is from local businesses or Government funding or even diaspora communities.
8.How are you meeting those challenges in Gunjur?
Disability Africa recognises that local knowledge is the key to success so we always try to find an experienced and well-connected local NGO to work with us as our project partners. We have been very lucky with our project in Gunjur – our partnership with TARUD has been a major element in the speed with which we have been able to start programmes there. With TARUD, we have devised the Gunjur Inclusion Project which has already started to make a huge difference to the lives of many disabled young people. We hope it will be a template which we can replicate in other parts of The Gambia and West Africa.
9.What have been your most important successes so far.
With the support of Mrs Fatou Giba, the Headteacher at the Tarud pre-school, we were able to start a playscheme for disabled children at her school on Saturday mornings. Mr Ebrima Tamba, the Project Co-ordinator and a team of dedicated young volunteers from the community have been running this very successful play scheme for nearly three years. We now have over 70 children registered on the programme.
The play scheme is very important because it is an inexpensive and easy intervention which can simultaneously:
* end a child’s isolation,
* provide an appropriately stimulating, fun and educational environment, * provide a context for medical & educational assessment
* create an interactive opportunity for parents and other family members to begin to change their expectations of their children, and . . . * change prevailing negative attitudes by providing an opportunity for members of the community, particularly young people, to gain positive experiences of disabled children.
With this simple, fun and cost-effective scheme we are already changing lives.
From the Playscheme we have developed other important services such as:
- A referral/follow-up service for children with urgent medical needs (currently 23 children are being supported)
- Support for families with information, transport and medication costs
- Home visits by project workers to establish family contact and give advice and emotional support
The Playscheme is the very heart of our programme it is the way we get to know the children, understand their individual needs and then develop the services they need.
A very significant step for the growth of the Gunjur Inclusion Project was the acquisition of some land near the Lower Basic School and some grant funding to build the Gunjur Inclusion Centre.
This is a new facility which will enable us to extend our range of programmes and services to provide disabled children with:
- Medical care, mental health care and physiotherapy
- Education – access to local schools; teacher support & resources
- Play scheme – improved facilities, accessible playground
- Parents’ & Carers Groups – support and information
- Promoting ‘Disability Awareness’ in schools and the community.
We are very pleased that the Chief of Kombo South, along with the Alikalo of Gunjur and the VDC all agreed to give the plot of land for this project. It is a real commitment on behalf of the whole community towards this project and we will do everything we can to work with TARUD to help make it a success.
But the real cornerstone, and the main focus of our work at the moment is our “Finding 500 Programme” which was launched last August. This is a wide-ranging initiative to raise awareness of the needs and rights of disabled children and to engage the Gunjur community to help us find at least 500 ‘hidden’ disabled children over the next three years.
This may sound like a lot of disabled children, but the World Health Organisation estimates that there are approximately 1,200 disabled children in Gunjur (population 23,000). “Finding 500” is designed to raise awareness of the Gunjur Inclusion Project and to create confidence in the families of disabled children so that they feel able to bring them to us.
I would urge anyone living in the wider Gunjur area who has a disabled child in their family to get in touch with either Mr. Tamba or Ms. Anchu Jarr, the Finding 500 co-ordinator.
10.What are the lessons you are learning for a wider Gambian or indeed African context?
Stigma about disability, and education about the rights an needs of disabled children, are our greatest challenges right across Africa – we have just started two new programmes in Zambia and the issues are exactly the same there.
* 'Toubab' is the colloquial West African term for a white person.