Why quality of life is an issue
Cerebral palsy (CP) is not just a day-by-day reality it has a moment-by-moment impact in people’s lives—not just in the lives of those with CP, but among families and caregivers, as well. Whether or not one of our community members has a fulfilling life has just as much to do with the quality of that life.
Access to tools and products
There are, of course, many specific products—including non-spill cups, the ability to type on a computer using an eye scanner, or an electric wheelchair—that can have a powerful effect on the quality of life of our community members. Our most recent World CP Day competition, for example, illustrated the need for a safer living environment by suggesting the possibility of a ‘sponge house’. But the needs of most of our community members are much more extensive and basic. What, for example, is to be done when a person who lives in a country in which adult diapers (nappies) are simply not available?
Access to information
Where can a parent go to get advice about the best way to care for their child? Where can a traveler find information about the most accessible tourist attractions? Where can a man with CP learn to become a writer for the local paper? Where can a teenager get access to the film, Margarita with a Straw or Enter the Faun, to find the inspiration to live their own life? Where can a woman get advice about how to become a standup comedian? The sea of needs, and the questions that arise from those needs, are vast. But it almost assured that they have been asked and answered by other members of our global community.
Access to support
Sometimes an ‘advanced’ society has become that way at the expense of the kind of familial and community networks that have historically supported individuals and families. In other societies, there are no support networks because of the stigma surrounding disability or the inability of people to connect across physical and digital divides. We have the chance to build supportive communities—first online, and eventually ‘on the ground’—that can help improve the social, economic and personal quality of life for people with CP.
Stories of change
Whether local or global, change often starts with one or two people and a big idea:
Olaf Verschuren won a 2019 World Cerebral Palsy Day Merit Award for his work on sleep, nutrition and physical activity in children with CP.
Igor Monteiro, IFCPF International Referee and Officiating Committee Member tossing a coin
Rwanda’s National Intellectual and Cerebral palsy Sport Committee (NICSCO Rwanda) have their eyes on taking a Boccia team to the Paris Paralympics in 2024 following the successes they’ve had creating...
Garry Brown is a CP7 according to Cerebral Palsy International Sports and Recreation Association (CPISRA), and a right-side hemiplegic. But it is not something that has ever even remotely slowed...
At age 21, Nicole Christodoulou had a stroke in her sleep that rendered her unable to use her left arm and leg. After a 10-week stint in hospital, she spent the next few years learning to walk again. Now she is a soccer player who motivates other young people with disabilities to strive for their dreams.
When Nonyelum Nweke couldn’t find suitable care arrangements for her daughter with cerebral palsy, she knew she wasn't alone and decided to provide a solution.
Information and education leads to empowerment and advances that will help improve the quality of life for everyone with cerebral palsy (CP). That’s the firm belief of USA's Brad Searle, creator of the world’s first dedicated TV app for adults and children with CP – Cerebral Palsy Television (CPTV)