An Independence Day Tale with a Difference

All around the world, families, teachers, and children are affected by the struggle for equality due to developmental disabilities. But in some countries, this is a struggle for survival. In Uganda, only one per cent of the population knows the terms Down Syndrome, Cerebral Palsy and Autism. Instead, they use words like kasiru, possessed, and cursed. Children with these disabilities are hidden away, living their entire life in a single dark room, chained to their homes, institutionalized, or abandoned. Girls experience a ‘double disability’ and face a high risk of molestation and trafficking, with over half experiencing ten or more incidents of abuse in their life.

My husband and I recently joined the Board of volunteers for Embrace Kulture: an organization that seeks to cultivate acceptance in East Africa where children with special needs are embraced for what makes them unique. The work is humbling. Our efforts are part of a small US-based team, and a dedicated Ugandan team who work relentlessly to improve the lives of those affected.

The pandemic created unprecedented challenges which have been met with a willingness to overcome the unexpected difficulties. Many students live-in at the Amaanyi Center where staff assist youth with special needs to learn how to gain independence. When the country went into lockdown, those who were able to return home did so. But some families are not equipped to cope with their child’s disabilities, some are unable to assist with teaching, and some simply do not have the room or financial resource to look after an additional child at home. By arranging for critical staff members and their families to move into the Center, four students were able to remain. This provided them with educational, emotional, and behavioral support during exceptional circumstances. While sheltering in place has presented many obstacles to regular learning, having extra time has also created opportunities that would not exist in a business as usual situation. Josephine Katusiime, Lead Matron of the girl’s wing explains some of her experiences from having one-on-one time with student Oliva.

“My key learnings are endurance and perseverance,” Josephine says. She plans to pass this on to her students when they return full time. But for Josephine, the progress she has made with Oliva has made the hardship of a pandemic worthwhile. She tells us, “Before lockdown, it was hard to assess Oliva’s full potential and independence because her school-work took priority. During this time, I’ve trained her to prepare meals for the Center without supervision.”

This skill is extremely valuable to Oliva, who has grown beyond her teen years. In the two months that the Amaanyi Center has been quarantining, she has learnt to produce meals in volume to feed 30-40 individuals. Christa Preston, Board Director at Embrace Kulture helps us understand the significance of this accomplishment. “Cooking in high quantities is an achievement for anyone, but to cater for those numbers with single pot cooking requires in-depth understanding of food preparation, cooking times, and distribution of food within the pot.” She adds, “Preparing food in that size is a skill that opens up many opportunities, including Oliva’s dream of working in a pre-school where she could prepare meals for the pupils.”

This attribute will not only help Oliva’s family for the festivities that often involve extended family coming together, but also puts Oliva in a ‘job-ready’ position. We asked Josephine how she feels about Oliva’s success. She says, “My target before lockdown was to bring independence to the girls. Happily, I’ve achieved it with Oliva in the kitchen.”

Embrace Kulture continues to support youth on their journey to independence. If you’d like to get involved, or find out more, please visit www.embracekulture.org.