Stars Ministry is a non-profit organization located in the Kampala district in Uganda. It’s mission is to work with people with disabilities, especially children and their families, and is home to nearly 40 “stars.” Early in September 2020, Stars Ministry and the Spiral Movement Center engaged in a new partnership to help parents work with their children during the Covid pandemic.
According to SMC Director Yuji Oka, the timing of the collaboration was perfect: “Last year, due to the shutting down of many childcare institutions because of Covid, we decided to launch a pilot project to bring online services for parents with children with disabilities around the world. The Stars Ministry collaboration was perfect because the need was very dire and there is a genuine lack of services for many children in many regions in Africa. We frequently get several requests from African families because they often lack the means or resources to get help for their children. Just last month I had a online consultation with a family whose daughter suffered from a deformity in her legs. She was a fantastically alert and energetic but socially there was no place for her to go—the schools wouldn’t take her in as they felt the other children would attack her.”
Stars Ministry is one of only a handful of organizations that exist in Uganda to take care of poorer families with children with disabilities; otherwise, care for these children is often non-existent. For Sylvia Kalyebara, Director of Stars Ministry, the mission to serve these families requires the help and participation of parents as well as a well-trained staff comprised of both paid and volunteer workers. She describes the structure and benefits of the collaborative partnership in the following way:
To equip staff to serve the Stars better, our physiotherapist, SMU Director and a few parents have been undertaking some online training in physiotherapy techniques. The training which ran for five weeks was offered by Adapted Spiral Praxis, a ministry to people with disabilities, children especially. The training is greatly improving the lives of some of the Stars. Nabaale Gift, for example, who was not able to participate in the therapy sessions, is now interested and able to participate in the therapy sessions. Gift is able to understand and respond to all the communications made during the therapy session.
The parent of Gift, who is participating in the learning, stated that “I have mastered the skills that I have been learning from the sessions. I have been practicing them with Gift at home though I am still being acquainted with a few of the skills”. The training has given the physiotherapist and parents common goals to work towards, that is, moving arms, head rising, rolling on her own, balancing on her propped elbows. “We can see tremendous changes; children are interested in engaging their arms to reach out for objects, some now feed independently and others with minimal supervision during feeding” said the SMU Executive Director. “Children with spastic cerebral palsy are more relaxed with less tense joints and muscles, hence can move their arms and legs with improved ranges of motion,” she added.
The collaborative partnership between SMC and Stars Ministry is a pilot project for future community service projects—we currently have collaborations that are emerging in India, Indonesia, and Tanzania. What we are finding is that there is a tremendous need globally for parents and caregivers to learn more about how to help their own children with special needs and disabilities. Over the next year, SMC hopes to create a non-profit arm to work with these community organizations and to help them train staff and families to care for under-served children. According to Oka, these pilot projects represent a potential new way to view healing in the disability community: “Normally we view medicine as the means through which we get treatment for children in the disability spectrum. Not everyone however has the means to get medical help. And there are also many situations where the medical system can fail children who require extra care to learn about their bodies. I want parents to know that there are many ways they can help their own children help themselves.”