Everything I’d ever known or felt about the work I do was shattered and turned upside down exactly one year ago. I remained in Uganda after that summer’s mission team had returned home. I was to distribute 50 beds to children in a village called Unyama — a few kilometers from Gulu, just outside a dilapidated displacement camp from the days of the LRA insurgency. I had just spent the morning with Lillian, witnessing a severely handicapped girl function in the relentlessly unaccommodating existence of an underdeveloped and impoverished country.
Lillian was to receive her first bed that day. Without the cover of a mission team, I was left to address the crowd of about 100 alone. And as I considered what I would say, I began to notice something different about this village. Across the sea of faces, I saw handicaps, physical deformities, erratic behaviors of psychological delays, deafness, blindness, the mute, the paralyzed, and the sick. I’d never seen anything like it in the villages of Uganda. It was the African version of the institutions for disabled and special needs kids I’d seen in Eastern Europe.
I needed to know more. There was something I just couldn’t understand about what I was seeing. Where had these kids been? Why hadn’t I seen them before? Why didn’t I know they were here? I began to ask questions.
Where mere existence is a fight and resources are desperately limited, priority is given to those who stand the greatest chance of survival.
It’s not at all uncommon to hear of parents who abandon one of their children in order to feed the others. It’s a matter of survival in places like these. The same often holds true of relief aid, medical intervention, and education.
Here, disabled children are stigmatized by neighbors and close relatives. Deformities are considered bad luck and misfortune. People don’t understand the biology and science behind them. Some people punish these children because they won’t be able to contribute to the family, and there are certainly no special opportunities for them. Here, preventable and treatable disabilities are caused by a lack of medical care, and those disabilities worsen, at best, as the child grows. Alternately, after some time here, you may notice very few adults with these disabilities. Survival beyond childhood is nearly impossible.
Unyama, once a very large displacement camp, has become a place where the disabled filter in and collect. LRA attacks orphaned most of the children and left only the most vulnerable behind. Those parents who weren’t killed by the rebels lost their lives to HIV/AIDS. With no access to medical care during pregnancy and birth, disabilities and deformities became the norm.
This week, I learned these children are not being served by any relief organization, nor by local NGOs. They have fallen through the cracks.
As the mother of a child with unique needs, this is not acceptable to me.
At the discernment of Jennifer, our Director of Northern Uganda, we will begin serving this forgotten category of children. We began with Lillian, and just this week we gave beds to 225 more of these children in two villages. Those distribution days were some of the most thrilling and happy days of my career. There’s nothing like the smile of a child with Down Syndrome, or the moment a disconnected child makes eye contact with you. And watching a child so disabled that they cannot sit or stand, lie down on their very first bed for the first time, is nothing short of awe-inspiring.
This is a new direction for our work. Previously focused on the HIV+ community, Sweet Sleep will begin diving deeper into this hidden community of disabled, handicapped, and special needs children. Already, we’ve had parents come forward to register their disabled children, with the hope of receiving a bed for that child. In the coming weeks, we will be exploring the villages and communities of Northern Uganda to identify more of these children. Ultimately, my vision is to bring a team of special needs advocates, like myself, to give beds to kids like these, and to play and interact with them in ways that are best suited for their needs.
As tragic as the reality of living with a disability in an emerging country is, I’m enthralled by the knowledge of what’s to come!
I was completely unaware of this incredible ministry opportunity, even though Uganda and special needs are my life! I can’t wait for the sense of community and awareness that is to come for both the special needs families of Uganda, as well as the advocates of America. And for those children who are yet to be discovered, I pray they will soon sleep sweetly.
