Big Lottery Fund's Jackie Killeen reflects on her visit to Nairobi
4 September 2015
Posted by Jackie Killeen
Big Lottery Fund's Scotland director Jackie Killeen reflects on a recent visit to Nairobi in Kenya, where she met our local team, that's funded through one of their International Communities projects.
I was in Nairobi recently as part of my course on international leadership and urban development, and while I was there I took the opportunity to meet with other funders, and also see some of the work we are supporting.
If you've spent any time in Nairobi, you will know that it is a city of contrasts and contradictions - a growing economy alongside very visible poverty and inequality; a hub of high tech innovation in the midst of huge overcrowded slums. In the context of such inequality, people who have additional challenges or barriers, such as disability, experience compounded disadvantage and many live very marginalised lives.
While in Nairobi I met the local team at Sense International, who we fund through the International Communities programme to improve the lives of deafblind children in Kenya, Tanzania and Uganda. Nairobi is their biggest site, and they are currently working with around 250 deafblind children across this huge, sprawling city.
The local Sense International team took me to visit a wee boy called Biden in his home in one of the city's slum areas. I met his mum, his two older sisters, and Jen, one of the specialist teachers that Sense International has recruited and trained for the programme. Biden is four and a half, is deafblind and is susceptible to fits or seizures which are only controllable with expensive medication. (Families in the main have to pay for this themselves, though the government has recently made a very small monthly contribution available - this is seen as real progress). Biden is lovely and has loving sisters who play with him, but he can't walk or feed himself, and although he can make sounds he doesn't speak. Jen has been working with Biden and his family for about ten months, which has meant that for the first time since birth he has had access to therapeutic approaches such as occupational health, physio / exercise therapy and a specially-made chair which is helping him to strengthen his spine. Sense International have also provided a wheelchair, and this means he can sit outside, which he loves to do.
His mum and his sisters say he has made huge progress since Sense International became involved with the family - being able to sit unaided for periods, engaging with toys (including his favourite, a rattle, which indicates that he may have some hearing).
It's hard to describe how difficult life is for families who find themselves in this situation. Biden's dad was not around, and I understand that fathers leaving once it is clear that a baby has a disability is not unusual. Biden's mum has had to stay at home to look after him as he needs round-the-clock care. This in turn means that his oldest sister had to leave school early, at a young age, to bring in money, as there is no social security or welfare provision. So everyone's life chances are impacted.
I was impressed by the way the Sense International team are working, both with individual families like the one I met, and in being very focused and strategic in working to influence wider change. Because they believe that deafblind children should have access to education, they have been both developing a specialist centre (where Biden now goes twice a week with his mum for therapeutic exercises) and with primary schools more generally - in fact they have developed a curriculum, which has now been formally adopted by the education authorities, for teachers to use with deafblind children in mainstream schools.
As was the case with Biden, deafblind children who have not received any interventions or therapy since birth may be significantly behind in their developmental milestones, and require a lot of support before they could be ready for school. This is where specialist teachers like Jen come in. She works with children and families in their homes, as well as with teachers to build their capacity and overcome stigma and superstition.
Stigma is a material issue - Biden's mum covers him with a blanket when taking him on the bus to the centre. Many people fear disability and there is poor understanding of why it occurs. Sense International are working on this too, though it is a huge societal challenge. Interestingly, Jen said that word of mouth, and demonstrating to other mothers with deafblind children that improvement is possible, has helped with the identification and participation of families who might otherwise have kept their deafblind child 'hidden.'
They are also working with research partners, because it appears that the high incidence of deafblindness and epilepsy is due to rubella in pregnancy - there is no vaccination currently and Sense International are working to provide the evidence and the business case to the Kenyan government for this.
Overall, I had the impression of an organisation that was embedded and connected in its local context. The local staff were well regarded and expert. They are working with the system and with other locally-based organisations, using their limited resources to partner rather than duplicate. The statutory system - health, education - has massive challenges (I was shocked to discover that in the whole of Kenya there are only a tiny handful of speech and physiotherapists), but Sense International is trying to work with the structure and service that are there to build capacity and improve inclusion.
I asked Biden's mum about her hopes for the future. She said she was now optimistic and hopeful for Biden, and could see that he might 'have a future' in which he could thrive.
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First published: Friday 7 June 2013
Last updated: Thursday 18 September 2014