By Adara Development
Rebecca and Joyce
When Joyce was born with birth asphyxia, it affected her vision, hearing and communication abilities. Her mother, Rebecca, was faced with an impossible choice: take Joyce for expensive further testing and medication or watch her daughter experience regular seizures.
Rebecca’s experience is not an unfamiliar one for families in Uganda, where there are often few resources for children with neurodisabilities. Across Uganda, there are stigmas that having a child with a disability is a curse or punishment for wrongdoing, and many see children with disabilities as burdens to the community. As a result, parents often feel isolated as they raise and parent a child with a disability.
“Relatives from my husband’s side say that I am cursed,” Rebecca says. “My father in-law told my husband that this baby won’t heal, and such babies end up dying”.
Despite a limited support network and few resources, Rebecca was determined to do her best to care for her child. On World Disability Day, she took Joyce to Kiwoko Hospital in Uganda for an event run by organisations that support people with disabilities.
While there, she received medication to improve Joyce’s health, and was introduced to Sister Christine Otai, Adara’s Newborn National Trainer. Christine recommended that Joyce be admitted to Kiwoko’s paediatric ward and told her that Adara would support Joyce to receive the tests she needed. She also introduced Rebecca to Adara’s Baby Ubuntu programme which supports families and children with disabilities. The programme is led by healthcare workers and expert parents that have a child with a neurodisability.
“The programme improves quality of life for children with moderate to severe disabilities and empowers their caregivers to maximise child development and health”, says Samuel Semakula, Adara’s Early Intervention Coordinator overseeing the Baby Ubuntu programme.
“It’s crucial to conduct continuous awareness and sensitisation sessions to curb down social intolerance and community stigma directed at children born with developmental disabilities. These sessions are intended to build an understanding and tolerant community, while integrating these children with developmental disabilities,” Samuel says.
After participating in the programme and seeing how it positively impacted her and baby Joyce’s life, Rebecca became an expert mother and uses her newfound knowledge to mentor other mothers of children with disabilities. She now leads a Baby Ubuntu group, supporting and mentoring other caregivers. Rebecca enjoys sharing her experiences with the other parents. It’s provided her with the support network she was sorely missing.
Rebecca and Joyce
“When there is community support, then the Baby Ubuntu programme has lasting impacts on the lives of the children and society.” Samuel says.
The outreach efforts of the Baby Ubuntu team have resulted in not only an increase in referrals to the programme, but an increase in awareness amongst the community about disability.
Adara has also invited religious and community leaders to help raise community-wide awareness about the different causes and types of disabilities, how to care for children with disabilities and how the community can help these children thrive. The aim of these sessions is to stop stigma and discrimination towards these children and transform communities’ attitudes around disabilities.
Baby Ubuntu group in 2022
We’re thrilled to see the positive impact that the Baby Ubuntu programme is having on children with neurodisabilities and their families.
We’re proud of all that the Baby Ubuntu programme has achieved so far and look forward to seeing it continue to evolve into the future.
* * * * * * * * * * *
Adara Development’s mission is to bridge the world of business and the world of people in extreme poverty, and to support vulnerable communities with health, education, and other essential services. Adara Development has expertise in maternal, newborn and child health, and remote community development. Adara Development reaches 70,000+ people living in poverty each year and countless others through knowledge sharing. adaragroup.org