Cerebral palsy patients deserve better care

It is not curable yet, but the quality of life of those affected can be improved with medical care and a supportive environment.



January 20, 2023

DHAKA – It is disheartening to know that children with cerebral palsy (CP) in the Korail slum are living in inhumane conditions. According to a report by this daily, they are confined to substandard housing – living in small, dark rooms – and denied proper care as well as the simple pleasures of life, like looking at the open sky. Currently, some 24 children suffering from this development disability live in the slum.

CP is a group of disorders that appear in early childhood affecting one’s movement, posture, and coordination. It is not curable yet, but the quality of life of those affected can be improved with medical care and a supportive environment. But families living in Korail slum are too poor to afford proper care. They barely have enough to spend on anything other than food and housing. More worryingly, they are often unaware of such disabilities, and do not know what to do when a child with an abnormal brain development is born into the family. That also means that these children suffer disproportionately. Even taking showers can be a harrowing experience as they do not have proper facilities or privacy. For girl children, menstrual hygiene can be an added challenge, as they cannot take care of such needs by themselves and must be assisted.

Another issue with caring for patients with CP is the disproportionate burden of caring imposed on female caregivers compared to their male counterparts. According to a yet-unpublished study, more than 97 percent of carers for children with CP in Korail are women. Family members other than mothers and grandmothers hardly ever offer assistance, creating a huge burden on the former. It shows the pitfalls of our patriarchal social system where women are given all the responsibilities of caregiving and even earning, especially in poor households, while men are given a free rein. Male family members must take equal responsibility when it comes to looking after children with disabilities.

On a broader level, both society and the state need to step up to address this situation. Proper care and rehabilitation of vulnerable CP patients is of paramount importance. CP patients need to be given need-based schooling, medication, therapy, and nutritious meals. The state needs to create a supportive environment for those with CP to grow and thrive. NGOs can also play a huge role in this regard. We must ensure that CP patients, especially in slums, are not stuck in a cycle of vulnerability where their socioeconomic background forces them to go through lifelong suffering. We urge the government to formulate a national policy to ensure better care of people with CP and other disabilities. Proper infrastructure, proper financial assistance for affected poor households, and a proper social outlook can go a long way in ensuring a better environment for them.

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