A great deal has been written about who should act and write
about disability issues. I very much agree with those who argue that the
primary right and responsibility to do this is for people with disabilities
(PWD) themselves. I continue to hesitate before joining in with my own views
and thoughts. In my work in this area, I have sought to assist the voice and
agency of the people, rather than impose my own. Where PWD are able to conduct
their own research and action, this is always preferable and others need to be
very respectful of this if they participate.
Today we were asked to attend a meeting of the Pamba Disability
Action Group. Okello Tom and I (we were referred to as “Tom squared” today)
helped set it up last year, so I guess I was a midwife at its birth, but it was done on
the initiative of the PWD and the caregivers of children
with disabilities themselves. Another group we helped launch has gone from strength
to strength, with over two hundred paid up members and active income generating
projects, but this one seems to be struggling to get established, and may have
made some unwise decisions. Certainly today the chairman admitted that their
administration was not all it should have been.
So it was a long and rather painful meeting under the mango
tree at Pamba Pentecostal Assemblies of God church, not made any easier for us
by having missed lunch after our morning visits (see
darton2soroti.blogspot.com). One aim was to find common ground between the
Global Care (GC) staff and the executive and members of the action group so
that GC could go forward with supporting the group financially. Barbara and I
with GC remain very committed to empowering the group and being partners with
them in their action to improve the lives of people with disabilities.
I anticipated when the groups started, that such challenges would
arise with the nitty-gritty of constitutions, minutes, accounts, audits,
memoranda of understanding and the like. Uganda does have a proper legal
framework for community groups. I suppose the challenge is for the group to
find its feet and gain trust from members, potential members and other
stakeholders. Members have to pay a subscription equivalent to £5 to join,
which won’t seem much to most readers but is a significant investment for a
poor family, if they don’t have certainty that they will benefit from it.
Benefits seem mainly to be conceived in terms of the ability to attract donor
funding, which is understandable but I hope they also focus on the actions they
can complete themselves or with local resources. I wish they could read my fellow
student Rachael C Taylor’s blog on autochthonous action! http://rachaelctaylor.wordpress.com/2013/11/01/why-the-term-autochthonous-should-appear-more-in-development-writing/
I was very pleased near the end of the meeting when a tall and
dignified older man arrived. I didn’t see how he got there; I wouldn’t be
surprised if he materialised from the air like an angelic apparition. I was
tentatively offering some advice at the time but was pleased to tell the group
that their elected adviser had appeared. Pastor Joseph Engolu carries his
authority very lightly, he listens a lot and doesn’t speak too much, seems
gentle and kind and I have immense respect for him. He and his church were very
helpful last year during my field work.
After this uncomfortable afternoon and a quick snack (can’t
call it lunch at 4pm) we were off again to Odongo Michael’s house (he’s one of
the GC staff) to see him leading parachute games with the local urchins. There
must have been at least 150 kids. Michael is a gifted communicator with
children but even so at times it seemed like a modified riot. A thunderstorm
intervened and we retreated indoors. A slightly aggressive hen was lurking by my
chair but I escaped unscathed; dear reader I hope you are impressed by my
fortitude.
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