The Ark wasn’t built in a day

 Today has been hot and dry. We did some teaching and brain work, but I have left Barbara to describe that over on darton2soroti.blogspot. I want to tell you about the Ark day centre for children with disabilities. This place is probably unique in what it is trying to do and we wanted to see how well it is succeeding.

Today two staff were working, one is on leave. There were six children present, some others are staying out of town during the school holidays. We had a look at the records that are kept to show the progress the children make. Actually, the outcomes recorded are pretty remarkable. Most of the children have severe and complex disabilities, like the little girl with severe visual impairment, weakness and spasticity of all four limbs and minimal ability to communicate in any way. She can now stand using a frame for half an hour and sit comfortably in a chair, but the biggest change is that she now appears a calm and contented child in contrast to the girl who used to strike and bite herself incessantly. Other gains by the children are the ability to communicate, to feed themselves and be continent. Most impressive was the sense of calm and purpose in the centre, where it used to feel quite stressful.  Lucy and Ida sat peacefully in the outside shelter providing therapy to contracted limbs and joints, education and play simultaneously without any fuss, only occasionally jumping up to sprint and retrieve an escaper. It is clear that they love their work and the children.

Adjustments are being made; some children have been discharged for home care (we plan to visit them to check on their welfare before we leave) and there will be more focus on helping children access education. The system of regular visits from the physiotherapist seems to be working well. The physio shows the staff and the families how to help the children and administer the therapy. We can improve on the record keeping, giving a clearer focus on the achievement of therapeutic goals.

In my experience, care for disabled children here is very difficult to achieve for the following reasons:

·         Lack of resources generally – families’ and helping agencies’ budgets are under strain and these children are often more costly to care for than others.

·         Lack of appreciation of the human rights of the disabled: though Uganda has exemplary laws about this, they often fail in implementation as many people do not want to divert scarce resources to this.

·         Lack of expertise, the poor state of healthcare, loss of professionals from state health services through competition from the private sector and overseas recruitment. This leads to families wasting a lot of their income and selling assets for ill-advised attempts at cure, while others who could benefit from treatment cannot access it due to lack of knowledge or finance, especially those who live far from centres of excellence.

The Ark and the disability support groups, alongside many other indigenous and transnational organisations, can work to mitigate this, but ultimately it comes down to political will and here we can look to raising awareness of the issue, and empowering the political representatives of people with disabilities to better represent their interest.

I can’t help being disturbed by what we see here, though I’m not the one who has to live with it, but it is great to be involved with this organisation that knows that you can’t do everything, you mustn’t do nothing and you can do something. Sometimes by God’s grace, it’s more than you thought it would be!