CELEBRATING DIVERSITY

The culmination of a groundbreaking research collaboration

By Standing Voice

December 15^th, 2017

The challenges facing people with albinism are widely documented. The obstacles. The problems. The hardship.

It’s much rarer to hear about the successes of people with albinism, the ingenuity of people with albinism, their triumphs big and small.

How is it that, faced with adversity and marginalisation, so many people with albinism forge their own path to welfare and security? What are the mechanisms, trends, and practices within communities at the grassroots level that people with albinism and their families have developed to successfully navigate the obstacles they may face through their lives?

These questions are rarely answered in contemporary research on people with albinism in Africa. Too often, we hear only the sad stories, with no parallel exploration of the positive weapons and instruments people with albinism have devised to succeed.

It was in the context of this research climate that Standing Voice embarked two years ago on a project to uncover empowering narratives of strength among people with albinism in Tanzania and Uganda. Specifically, the project explored the agents and facilitators of change that people with albinism and their families use to succeed at various life stages, from birth through to education, employment, and starting a family. Led by Dr Patricia Lund of Coventry University and funded by the International Foundation of Applied Disability Research (FIRAH), the project was delivered by Standing Voice in Tanzania (with the local support of New Light Children Center Organization [NELICO]) and Advantage Africa in Uganda (partnering locally with the Source of the Nile Union of Persons with Albinism [SNUPA]).

November saw the completion of this project, as the research teams revisited communities across Tanzania and Uganda to disseminate findings and obtain participants’ feedback. In Tanzania, Standing Voice’s Communications Manager Sam Clarke travelled with Dr Lund and representatives of NELICO to Geita and Ukerewe Island: the original locations where research was conducted. There, the team conducted home visits to share the progress of the project with previous contributors.

Larger-scale dissemination events were also held, with community members, media, and local government representatives invited to explore the outputs of the project and reflect on the success stories to have emerged in its wake. A child’s education turned around by a supportive teacher; a small business owner winning community acceptance because of economic success; a new mother determined to guard her child from the sun with makeshift protective garments: such were the stories of tenacity, determination, and resilience thrust into relief by this project. The particular power of community members without albinism to enhance and enrich the lives of those with the condition was also underscored.

For the dissemination events in Geita and Ukerewe, the team held a photographic exhibition, featuring people with albinism and their families. For people with albinism—so often hidden from public view, invisible in mainstream representation and reporting—the experience of seeing their faces normalised and celebrated in a community setting was profound and transformative.

The exhibition also featured quotations and comic strips, illuminating the themes explored by participants in interviews. Produced by Theophil Reginald Mnyavanu, these illustrations captured scenarios familiar to the participants.

Artwork credited to Theophil Reginald Mnyavanu

Like the exhibition, this project has been a joyful celebration of the diversity, strength, and beauty of people with albinism, as well their friends, families, and communities.

With thanks to the communities of Ukerewe and Geita, Dr Patricia Lund and Coventry University, the International Foundation of Applied Disability Research, Paulina Alex, Eddy Kennedy, William Jonam and their team at NELICO, Local Government, the media and Theophil Reginald Mnyavanu without whom none of this would have been possible!