The low levels of public awareness about cerebral palsy have been highlighted as a serious impediment to the effective management of survivors.
Cerebral palsy is a group of disorders that affect a person’s ability to move and maintain balance and posture. It presents as permanent tightening or loosening of body muscles, as a result of brain damage, which occurs during or after birth.
People with cerebral palsy can have problems swallowing and commonly have an eye muscle imbalance, in which the eyes don’t focus on the same object. They also might have a reduced range of motion at various joints of their bodies due to muscle stiffness.
Christine Karungi, the Executive Director of the Uganda Association of Cerebral Palsy-UNAC, a charitable organization supporting survivors, says that the public has scanty information about the condition, and as a result, this affects the way they relate with the community and restricts survivors from the enjoyment of some inherent rights.
She explains that unless the survivor presents with multiple physical disabilities, the public tends to perceive Cerebral Palsy as a curable medical condition, denying persons living with it the support they deserve for their survival. The concerns were raised during the activities to mark World Cerebral Palsy day, held at the Masaka Liberation square on Thursday.
Karungi says that lack of public awareness about this condition; many survivors are struggling to access the required support, and in some cases, the community tends to bias it toward their superstitious belief hence violating the people living with the condition.
Rashid Kalule, the UNAC board Chairperson says that they are currently compiling a national register of all people living with Cerebral Palsy, which will act as a weapon to demand their rights and protect their colleagues wherever they are.
As a remedy to marginalization, Kalule explains that their organization has embarked on cultivating partnerships with the various stakeholders that include cultural and religious institutions, asking leaders to become goodwill ambassadors who can encourage the community to embrace survivors such that can also be treated with dignity.
Edward Kanamugire, the Coordinator of Persons living with Cerebral Palsy in the greater Masaka sub-region observes that besides being categorized among Persons with Disabilities, survivors of cerebral palsy need to be given extra attention from the government because some of them have a combination of impairments that make them isolated by the community.
For instance according to him, on top of the angular deformities, some of the Cerebral Palsy survivors have sight and speaking difficulties, and opportunistic health conditions that require routine medication and examination unlike their counterparts with physical disabilities who only require supporting tools for their survival.
“These people need special attention by all stakeholders such that can also enjoy their right to life,” he indicated.
A population-based survey conducted in 2017 put the prevalence of Cerebral Palsy at 2.3 per cent per 1,000 live births. According to the Uganda Association of Cerebral Palsy-UNAC, their records apparently have 300 survivors, a figure they however say is a small fraction of the general picture. URN
