The Best Support for Disability Work Is *with* the Disability Community
by Sylvia K. Ilahuka, Writer & Editor
On the African continent, infrustructural inadequacies make mobility a challenge — for everybody, and that much more so for people with physical disabilities. The lack of affordable well-constructed assistive devices further heightens this problem, and well-intentioned donations from abroad prove not very helpful because they were not originally designed for their destination. This is where organizations like Kyaro Assistive Tech come in: based in Arusha, Tanzania, they are a prime example of a local solution to a local problem. Working with individuals and organizations like Songambele Initiative Organisation, Kyaro creates customized devices for people with disabilities: made specifically for the user, comfortable, and providing dignity through the resultant freedom. Songambele, which provides support primarily to spinal cord injury survivors, was founded by Faustina Urassa who is herself a wheelchair user. Drawing from her own resilience and luminous personality, Urassa encourages and informs about the realities of living with paralysis. She speaks publicly through mass media, and privately to those impacted and their families; Songambele’s work serves the dual purpose of addressing misinformation about life with physical disabilities, and driving resource mobilization. The dearth of funding dedicated to organizations like these is seen across the globe; in Africa, where philanthropy is already riddled with other challenges, even more so. People with disabilities, cognitive and physical, face a variety of challenges compounded by a world that seldom creates avenues by which they can participate fully in society. The barriers are many and high, ranging from the practical to the intangible. Segal Family Foundation funds these organizations from a values base; a rights-based approach can also help bridge the gap by acknowledging the disability community slogan, “Nothing about us without us.”
One of Western-led philanthropy’s greatest challenges is appropriately supporting the needs of local communities — the key word here being ‘appropriately.’ The best way this can look is funding organizations led by locals who know what is needed where; another way is by having people from said communities sit at the table where donor decisions are made, to advise and guide. However, too often not only are locals not given enough airtime, but within those communities there are groups that are further left out of the conversation. These groups include people with disabilities (PWDs) and the organizations working with them. In many African cultures and elsewhere in the world, myths run rife about disabilities whether congenital or acquired. The more harmful perceptions call for hiding, shunning, and abandonment of PWDs; other mistreatment results in outright death. It is because of such cultural beliefs that SHERP was formed, to provide sanctuary to children who would otherwise be killed or left to die in Kenya’s Samburu County — similar motivation behind Home of Hope in Uganda. The same myths and stereotypes made Gabriella Children Rehabilitation Centre’s early years in Tanzania particularly challenging, as neighborhood residents would go as far as to take a longer path to avoid walking near the building. Founder Brenda Shuma is a therapist (as is Mukisa Foundation’s Florence Namaganda) who has imbued the center with a holistic approach to disability support. The lack of affordable and culturally-relevant resources has pushed Shuma to get creative such that the majority of the tools used at Gabriella are made in-house. The olfactory training room has little cloth sachets filled with familiar Tanzanian scents like pilau spices; another sensory room has weighted blankets made by the center’s tailoring students. The physiotherapy facility has a trampoline built by the carpentry students using wood and rubber strips cut from old car tires — strong enough to withstand the children’s energetic bouncing, affordable enough to be made again and again as needed.
Acknowledging that external solutions don’t always fit and that there is a need to find homegrown ways to meet the disability community’s needs, collaborative approaches such as Organisation of Special Needs Education Teachers (OSNET) have sprouted. Working in Tanzania, OSNET brings together educators who are from the communities served and understand how best to reach and relate to children with disabilities and their families. Banding together also helps with advocacy efforts, as there is strength in numbers — an approach that could be applicable in smaller countries like Burundi and Rwanda. In Burundi, Centre Akamuri is a pioneer and a leader in holistic interventions for children with disabilities; in Rwanda, Izere Mubyeyi is one of very few. Amongst our partners, the African Disability Collaboration has emerged as a collective of organizations working with children with disabilities in Kenya, Uganda, Tanzania, and Malawi. Not only do coalitions like these amplify impact by combining efforts, they also make it easier for donors to allocate higher funding figures. Philanthropists have a unique opportunity to make a significant impact by supporting organizations that are greatly overlooked yet greatly needed; the most significant impacts in philanthropy arise from supporting the most underfunded causes. In all this, the most meaningful (and respectful) approach is to talk to, listen to, and learn from organizations like Songambele and Uwezo Youth Empowerment in Rwanda that are founded by, led by, and serve people with disabilities. At the end of the day, be it visual assistive technologies such as those designed by inABLE or community-based special care as implemented by Kyaninga Child Development Centre, the work is already being done locally — ample dedicated funding will help it go the distance. We at Segal Family Foundation would love to see more donors intentionally seek out and support smaller, local organizations working in the disability space! To help strengthen understanding about the sector, we have put together this brief; to our peers, consider this an invitation to talk to our Equitable Giving team about disability-inclusive philanthropy.