E’ssuubi by Daniil Zozulya at Galerie Satellite

E’ssuubi is a project about hope, an ongoing close collaboration with SHAU (Spina Bifida & Hydrocephalus Association in Uganda).

Overview

Every day, young Ugandans affected by Spina Bifida and Hydrocephalus fight to assert their undeniable rights and value in society. E'ssuubi is a photographic documentary project about hope, created by Daniil Zozulya, a young photographer who studied at ESA 75 and KASK, in close collaboration with SHAU* (Spina Bifida & Hydrocephalus Association in Uganda). The goal is to highlight an issue that severely affects the Ugandan population and against which SHAU has been fighting intensely since its creation in 2016. In collaboration with residents and members of the association, Daniil seeks to affirm the presence of people affected by the disease, with the aim of breaking what was considered a taboo just 25 years ago. Using photography as a means of expression and a claim for inclusivity, E'ssuubi demonstrates the pride and resilience of these people who live or have lived with the challenges associated with Spina Bifida and Hydrocephalus. The project is an attempt to offer, through photography, a representation as accurate and complete as possible of the word "hope.

*SHAU was founded on January 15, 2016 as an initiative to enable people with disabilities, particularly those living with Spina Bifida and Hydrocephalus, to access all service delivery processes at various levels of governance – public, private, and civil society – in Uganda. The founders are calling for concrete measures to reduce discrimination and disparities in access to socio-economic services across the country. The organization's founding vision is a "sustainable world providing inclusive services for people with Spina Bifida and Hydrocephalus," with a mission to promote equitable access to coordinated, quality, and affordable social services for these individuals and their families, through public dialogue, public-private partnerships, research, and capacity building.

Spina Bifida is a birth defect that occurs when the spine and spinal cord don't form properly during the first four weeks of pregnancy. Hydrocephalus literally means an excess of "fluid" in the brain. The prevalence of Spina Bifida is 11.7 per 10,000 births, and that of Hydrocephalus is 23.9 per 10,000 births. Treatment for both conditions involves surgical interventions. However, both conditions can be prevented.