Despair and Hope. And a Thing.

In Soroti District Referral Hospital it wasn’t my white skin or my inability to communicate in Ateso that made me feel like an alien accidentally beamed onto a hellish distant planet. I was experiencing a major conflict between being a voyeuristic misery tourist and the urge to flee somewhere safe. Why were we intruding in a place where people were so desperate with sickness and fear and the knowledge that every day, every treatment or procedure was depleting their meagre resources or putting them deeper in debt? Never mind the fact that several people with the most serious, and

malodorous, conditions were not getting any treatment at all or even food, as they were destitute. While I had been wrestling with the challenge of how to eat all the food that people here are giving me, and knew that if I were ill, my travel insurance would whisk me away to a proper hospital. One where people had time for me, all the needed drugs and equipment, and did not need me to pay them extra to do their job.

Nevertheless, under the skin these are people just like you and me, with the same needs and desires, aspirations and fears, loves and loathings. We inhabit the same planet in fact. The glaring and painful differences between us are not accidental, rather they are mainly man made and the result of human decisions and actions, both historical and present-day. Their causes and solutions are in other words political.

Speaking in Nairobi this August, Dr Margaret Chan, Director-General of the World Health Organisation quoted Nobel Laureate Amartya Sen in describing Universal Health Coverage as “an affordable dream”. 100 million families a year are said to be pushed into extreme poverty as a result of unaffordable health expenditure. In 1948, stirred by the impact of war, Britain took the courageous and visionary step of introducing a National Health Service. Its success demonstrates to the world that a reasonable investment of national resources leads to a pooling of risk that is in everyone’s interest. Let us stand together to ensure that it is preserved and that similar systems prevail across the world. Or are we content that the rich get the best treatment, while their neighbours suffer under this intolerable burden?

And then we had the honour to visit the Atiira Disability Support Group, a fine example of people working together to bear burdens in a spirit of brotherhood, transparency, optimism, loyalty and so many other virtues. A completely different set of conflicting emotions for me. This group started in response to my Masters research project on childhood disability in June/July 2012. Back then, when I returned to the shade of the mango tree in Atiira Primary School to feed back my research findings to the people I had been meeting and interviewing, they responded by insisting that I help them to set up a support group on the spot. And they have gone from strength to strength. So now they treat me with great respect and gratitude, though I think they are the heroes of this story and I just had the good fortune to be there at the time they were ready to do this. It is nice to be feted as a celebrity but also uncomfortable, and they always say they will have a drink with us and then prepare a feast with the little resource that they have.

This group has over a hundred members and a committee elected from all the parishes, representing mainly parents of children with disabilities but also disabled adults. They pay a monthly subscription and can then apply for benefits. These can be micro loans, usually for an income generating venture like buying ingredients for foods to sell. Also most families have received a goat. They explained to me that the first kid is repaid to the scheme to give to another family, subsequent ones are kept. They can then be sold to provide for the family’s needs. And the grass and browsing are free, as they live in the country. The group is well led and organised and has recently been registered with the government as a NGO. This enabled them to receive a grant (used for more goats) to add to the regular support they get from Global Care. They seem to give each other a lot of support and encouragement as well, which helps to overcome the stigma and isolation that attaches to disability (and please don’t think that stigma and isolation are only problems in other countries than your own).

So three cheers for Atiira Disability Support Group and Global Care, and none for underfunded or privatised health care disasters. And here's a thing.