Activists use music , art to create awareness for spina bifida , hydrocephalus

Activists under the National Spina Bifida and Hydrocephalus Association of Uganda (SHAU) have launched an advocacy campaign using music and art to create awareness about the spina bifida and hydrocephalus conditions.

Speaking at the launch, Ruth Nalugya, the SHAU Executive Director said following the hardships that they faced during the Coronavirus lockdown, they opted to get ways of increasing awareness of the condition so that many people come to their help

“We want to continue with advocacy and awareness but unlike in the past where we have been doing it in an approach common to everyone, we realized during the lockdown when most of us the only way of communication was via phones that we ought to change the approach,”Nalugya said.

“As SHAU we had plans of going back to communities to create awareness about the conditions. For the whole year, physical meetings were a nightmare but as bright advocates we said this can’t be a limitation there are other ways through which we can continue with awareness and advocacy.”

She noted that they resorted to music and art as a way of advocacy and fighting stigma against persons living with Spina Bifida and Hydrocephalus.

“We decided to get in touch with the media and other experts in photography and videography to assist us to spread the message. We think through music and art, many people will get the message because we have been lacking this approach. If we use the approach of plays and music to create disability awareness for this condition, we can make good strides and the world can be a better place for people with Spina Bifida and hydrocephalus,”Nalugya added.

Speaking at the event, Commissioner in the Ministry of Gender, Samson Masiga who represented the Minister of State for Elderly and PWDS, Sarah Kanyike said government is committed to supporting the organization and people living with Spina Bifida.

“Government has developed a good legal framework for the empowerment and ensuring participation of persons with disabilities and as such, a fund was set aside for the PWDS which we believe will enhance their livelihood,” Masiga said.

Spina bifida is a birth defect that mainly affects the spine. Normally in the first month of pregnancy, a special set of cells forms the “neural tube.”

The top of the tube becomes the brain and the remainder becomes the spinal cord and structures around it.  In spina bifida, the neural tube doesn’t close all the way and some of the bones of the spine don’t close in the back.

Experts say that about 60 percent of hydrocephalus cases in Africa are due to infections like germs whereas others are caused as a result of head injuries and tumours among others.

However, sometimes, hydrocephalus develops when the child is still in the womb.