Jinja District, Uganda – On a muddy, uneven and unnamed road on the outskirts of the eastern city of Jinja, children laugh and play in a compound surrounded by green hills and sugarcane plantations.
A child hurtles his wheelchair down the driveway at breakneck speed towards a heavy gate manned by a friendly security guard. On the worn concrete veranda, a young boy with hydrocephalus – a condition in which fluid enlarges the skull – laughs loudly as he plays checkers with two friends.
The cheerful atmosphere belies the difficult backgrounds of the 98 children – aged six months to 18 years – who live on the compound. All were abandoned. Most were babies when their parents left them. Some were left at the compound gate, others at hospital after they were born while one three-year-old boy was rescued from his home days after his parents disappeared.
Today, more than six million people in Uganda, a country of nearly 50 million, live with a disability. Many consider disability to be a burden due to a long-held cultural belief that it is a curse.
Families with disabilities are often shunned by their communities and, in the absence of support or knowledge of better practices, often resort to restraint, tethering and forced seclusion. In some cases, children are abandoned due to social stigma and financial hardship. About 31 percent of households with a disability live in poverty.
Just 1 percent of the country’s health budget goes towards helping these families. “A meagre amount,” says Andrew Mubangizi, assistant commissioner for disability. In rural areas in particular, a lack of staffing and resources at government-run clinics means caregivers often have to travel long distances to access support.
However, for the past two decades, small, donor-funded organisations and charities dotted around the country have tried to fill the void left by the health system to care and advocate for those living with disabilities.
One of the people leading the movement is Edith Lukabwe, who is raising the 98 children at her Home of Hope orphanage. She hopes that educating small pockets of her local community to raise awareness will balloon into a more accepting society. “[People] can then teach their communities. … There shouldn’t be a cultural stigma,” she says.