Data Collection = Organizational Empowerment.

One of Gulu Disabled Persons Union’s main needs is an up-to-date census of persons with disabilities in the district of Gulu. This would be extremely helpful as they create their next five year strategic plan and craft their current grant proposals. Despite the fact that the presence of persons with disabilities in Gulu is overwhelming, the lack of solid data makes it difficult for advocates for PWDs to establish urgency and create a cohesive plan.

The most recent legitimate census in Gulu was in 2002. Since then war has caused thousands to become displaced, many to sustain disabling injury and others to sustain injury due to poor healthcare. In areas of conflict it is understandable that collecting this kind of information is the last thing on people’s minds. During rebuilding, however it is essential to creating sustainable programs which can help Gulu get on its feet.

What is a disability?

This kind of data collection is not as clear as it might seem at first.  The label of “disabled person” can have a huge impact on one’s socio-economic status and perception of themselves. Persons with disabilities have been viewed as burdens instead of persons with equal value and equal ability to contribute. Furthermore, what is a disability? Are you considered disabled if your injury is due to old age? Should person with mental illness or post traumatic stress syndrome be counted? How disabled do you have to be to be counted and more importantly, to receive benefits. Are there risks involved in with being labeled disabled?

Who would be the international spokes model for data collection?

Who will pay for this work? As I have written in previous blogs, most of the work for PWDs in Gulu is funded by NGOs who must solicit donations from foreigners. In order to secure these resources they must move these donors with emotional stories. Who would you be likely to give money to: an organization saving children whose parents were killed by the Lord’s Resistance Army  or data collection? What celebrity would go on tour asking for donations for data collection? You can hardly go a day in Gulu without hearing or seeing the evidence of programs aimed at serving orphaned children, or women maimed in the war. These problems are certainly crucial, but despite their good intentions international organizations get caught up in the immediate emotional issues and divert resources from the crucial underlying problems.

GDPU's Mr. Fred Semakula assessing client

NGOs, government agencies and advocates must commit themselves to wading through these questions and concerns and faithfully execute a comprehensive data collection plan…  Until this work is done many people in need will fall through the cracks and basic needs for PWDS will go unaddressed: the blind woman who is clearly in need goes without a white cane, the child without the use of his legs goes without a wheelchair, the deaf man will go untreated because there is no one to translate for him to his doctor.