Growing up in the United States or other Western societies, we often are told to “be yourself”. Our identities are based on individuality: our likes, dislikes, beliefs. We spend much of our youth learning to define who we are, and the focus is on finding oneself and being independent.
It is not the same in places that have a more communal culture.
Ubuntu is a philosophy in Southern Africa that means “I am because we are”. People in traditional African societies feel that without their family and their community, they are not a full person.
Celebrating International Day of the Family, it is important to reflect on this, and how important it is to our work.
When I meet family members of those we serve in Tanzania, they will often not introduce themselves to me by their first name. They will ask me to call them “Mama Joshua” (Joshua’s mother) or “Baba Janet” (Janet’s father), or “Bibi Eriki” (Eriki’s grandmother). They express their identity through their relationship with their child. That child is not separate from them; the child is a fundamental part of them and their identity.
We cannot meet the needs of a child with a disability without also looking at the needs of the family and of the community. Though disability is not contagious, stigma definitely is. In Tanzania, when a child with a disability is born, the disability is often seen as a curse or the result of the sin of the parent. Extended family and community members will often shun not only the child with a disability, but the entire family. In a place where people get so much of their sense of identity from their community relationships, this type of stigma is a type of “social death”.
This is why the BCC model of comprehensive services heavily incorporates families into the approach. In the center based and outreach services, staff build up strong relationships with parents, grandparents, and siblings who take care of children. Some mommas will stay at the center for part of the day, assisting with exercises and feeding. They talk to each other, forming their own community amongst their peers. For many who have found their connections cut off due to stigma, this is a way to rebuild a support system. They meet other families who have faced the same challenges and can provide encouragement and an example.
Economic empowerment of families is also key. Many families of children with disabilities find themselves in a poverty trap from social exclusion and lack of services. When a child with a disability cannot go to school or access assistive devices and early intervention, they are made to be dependent on a caregiver. With no safe place for the child to go, a family member must give up going to work and stay home care for him or her all day. The social environment not only disables the child, but the whole family.
Since the opening of the BCC day centers, parents whose children are now receiving therapy and education are able to look for work. A micro-credit loan program started with a grant from the ELCA World Hunger program a in2011 helped bring more economic opportunity to families of BCC children. Parents could take a small loan to start their own business, such as opening up a soda stand, raising chickens, or starting a tailoring business. About 100 BCC families have a member who has taken a loan, with some having already successfully repaid and taken on another loan to expand their business. An impact study of this program found that on many indicators, including number of meals per day, the families that had taken a microcredit loan and started a business were doing much better than they had been before they had taken the loan. By supporting caregivers with opportunities, BCC serves the entire family, including the child with a disability.
We cannot support a child with a disability without also supporting their family. Families who feel a sense of belonging are more likely to advocate for their children to be included in society, rather than be overcome with shame. Families that have resources and knowledge can help support their child’s development and help them reach their full potential. Families that have hope for the future can impart that onto their children, so they too can see their lives as being full of possibilities. These families can then come together to build communities that are caring and inclusive.