Ruby was in the country as part of a USAID funded collaboration grant with USCRF to create books aimed at challenging the social and cultural norms fueling sickle cell associated stigma. Ruby emphasized the need of creating a support system for persons affected with sickle cell. She also emphasized the need for health workers to support such patients and not label them.
In Uganda, the combination of frequent stigmatization and discrimination of people living with sickle cell often leads to a sense of isolation from family and society. This is made worse by limited and often inaccessible formal social support structures that help patients and families cope better with the psychosocial burden of sickle cell. This psychosocial burden often affects the esteem of people living with sickle cell. These practices are often fueled by communities not being informed about sickle cell disease.
Ruby Goka was in the country to work;
- Carry out in person interviews with young girls living with sickle cell to further inform the book project of sickle cell experiences in Uganda.
- Interview families, friends, teachers of people who live with sickle cell disease in the districts of Butambala, Mukono and Kampala.
Above all, she wanted to experience Ugandan culture and get a sense of the people, their behaviour and their environment in order ‘to show and not tell’ the reader about life in Uganda.
This was to make sure that characterization, plot and setting are authentic to Uganda.
The public lecture attracted 142 people from all departments within the University. This is what some of them thought. Victoria a student from Diploma in Clinical Medicine class said
“I have learnt to avoid stigmatizing and discriminating those with sickle cell and other illnesses”. Flavia a student of Medical Laboratory Science said “I have learnt that my training as a health care worker should not limit me, because Ms Ruby is a dental surgeon but she is still writing books”.
The public lecture was covered by Delta TV. Watch it below