Cerebral Palsy Awareness Day 2020

How many of us know about cerebral palsy? How many of us communicate with people who have cerebral palsy which affects their communication? What have we done as a society to bring our friends and family with CP into our loving folds? These questions are in my mind today. I have had the opportunity to very closely interact with four persons with cerebral palsy – Sudipta, Rajiv, Ashok and Malini. Each, an astounding human being with incredible intellect and fiercely independent. Yet, I have many times failed to communicate as I couldn’t understand many of the words. Malini uses a communicator and that makes things easy. Sudipta and Ashok can be understood easily in close quarters. But Rajiv, along with his speech, has severe muscular problems in coordinating bodily movements. You have to listen carefully and then you are amazed by the sharp mind and intense thoughts, speaking passionately on pertinent issues. Malini, many of us have heard about. If you have seen Margarita with a Straw, yes that is based on Malini’s life. Educated, intelligent and searching for her sexual being. Sudipta is the President of Self Advocates in India and a governing body member of Swabhiman in Bhubaneswar. Ashok just cleared his matriculation and joined college. Each of them is educated or learning more. Rajiv is the coordinator of Chennai-based NGO Vidya Sagar’s Disability Law Unit (South). He is also the founder and general secretary of Ektha, an NGO that advocates for the rights of people with disabilities. Sudipta is a counsellor and trainer in Open Learning Systems Bhubaneswar. Malini is the founder and co-chairperson of ADAPT Rights Group. In December 2010, Sage published her autobiography One Little Finger, which received critical acclamation. Ashok was deserted by his family at birth and lives in an ashram. He has been educated and supported by an NGO, Roshni, in Gwalior. These four people are only a handful of the hundreds and thousands who wilt in the fields, unknown and unsupported.

Cerebral Palsy (CP) is a physical disability and affects a person’s ability to move and maintain balance and posture. It is a condition in which the ability to control his or her muscles is negligible. Few have low IQ, many are brilliant. The one’s I have met and known are all brilliant people with an unmatched wit. Effect of Cerebral palsy varies in different individuals. Some affected people can walk; others need assistance. When people have stiff muscles i.e. increased muscle tone it is called Spastic Cerebral Palsy. Dyskinetic Cerebral Palsy manifests as problems controlling the movement of hands, arms, feet, and legs, making it difficult to sit and walk. Sometimes when the face and tongue are affected and the person has a hard time sucking, swallowing, and talking. Those who have problems with balance and coordination and might be unsteady when they walk comprise Ataxic Cerebral Palsy. People with symptoms of more than one CP are people with Mixed Cerebral Palsy. The most common type of mixed CP is spastic-dyskinetic CP.

Inaccessibility of building, transport, websites, communication, information, judiciary, schools, colleges, employers and organisations are the greatest challenges they face. A communicator, an accessible venue, a scribe, an accessible public transport, accessible information is what they need. How many educational institutions, principals and libraries have taken a step to create accessibility for them? How many employers have posted the Equal Opportunity Policy on their website and are ready to provide reasonable accommodation? Are we going to take a minute to ponder on why they are facing challenges to get mainstreamed – their disabilities or our “Inaccessible and discriminating attitude?”