World Cerebral Palsy Day is a movement of people with cerebral palsy (CP) and their families, as well as the organisations that support them, in more than 60 countries.
The World Cerebral Palsy Day vision is to ensure that children and adults with CP have the same rights, access and opportunities as anyone else in our society.
Robyn Cummins World CP Day Manager explains:
"Cerebral palsy is the most common physical disability in childhood and is also one of the least understood. There are over 17 million people living with CP and 350 million family, friends and supporters who care about them."
"We talk to people with CP, their families and organisations around the world and find incredibly frustrating similarities. The same issues keep coming up again and again."
"One of those issues is what we call quality of life. It's about helping people thrive, and find enjoyment and fulfilment in life."
"We are hearing about some wonderful success stories - individuals and organisations who are creating positive change in their communities and are willing to share their experiences, tools and tips. Our mission is to highlight the issues, unearth the success stories and encourage people to take action in their communities."
CP is a complex, lifelong disability. It primarily affects movement, but people with CP may also have visual, learning, hearing, speech, epilepsy and intellectual impairments. It can be mild - a weakness in one hand - to severe - where people have little control over movements or speech and may need 24 hour assistance.
"People with CP across the world tell us that they face a range of responses in their communities," explained World CP Day Manager, Robyn Cummins.
"A young woman with CP recently told me: 'People either underestimate us, or overestimate us'. It may be through well-meaning but misguided sympathy or pity, which serves to undermine a person's autonomy and independence. Or, it can be people who want to make a 'hero' out of someone who just wants to lead an ordinary life."
In many countries, people with CP face superstition and they and their families live a life of exclusion. Other countries seem inclusive on the surface, but have a population who are not quite sure what to say to someone living with CP, so don't engage at all.
There is nothing to be gained in blaming people for their ignorance about CP. Instead, World CP Day is working to put an end to it. Around the world individuals and organisations are working to dispel the myths and break down the barriers to ensure that people with CP, and their families, can live full, contributing lives.
The global struggle for civil and human rights is ongoing but, even in societies where the most progress has been made, many people with CP lag well behind the majority.
At one end of the spectrum are governments that are struggling to meet the basic rights of all its citizens, so the population of people with CP are even more vulnerable. People with CP can face stigma and superstition that limits theirs' and their families' futures.
At the other end of the spectrum are governments that have enshrined the rights of people with a disability, but where there are still subtle, systemic barriers to full participation and inclusion.
In the middle are a range of well-intentioned countries that have made declarations of intent but never quite fulfil the resolve in practice.
"We need to pool our resources to ensure that government officials at the local, regional and national level take concrete action to guarantee basic rights, full citizenship and individual opportunities for people with CP", Robyn declared.
Access to education is not just a human right, it is the single greatest predictor of a fulfilling life, and perhaps the most important measure of a society's social and economic potential.
Without that access, a future of living separate from society becomes cemented at an early age. But access is not enough.
In fact, access without expertise can actually increase the chance for social stigma without increasing the opportunity to learn. Too many members of the CP community--whether in elementary or graduate-level learning environments--find themselves relegated to the back of the classroom without appropriate support to ensure they learn. Others can become so much of the focus of an inexperienced teacher's attention that, sadly, other class members and their families can develop resentment.
The key to success is enough qualified educators and support specialists to ensure that every person receives the education they deserve in the way that best ensures they are able to learn.
This challenge extends beyond the classroom to all forms of learning. From access to knowledge through the internet, to the specialised training that can help a person get a new job or promotion.
To understand the medical/therapeutic issues surrounding people with cerebral palsy (CP), it is best to divide the discussion the three basic building blocks of care: cause, diagnosis and treatment.
Addressing the cause:
There is no single cause of CP, rather, a sequence of events, either before, during or after birth that can lead to an injury in a baby's developing brain. For most babies born with CP in developed countries, the cause remains unknown. Only a very few are as a result of complications at birth (e.g. asphyxia or lack of oxygen).
In the developing world, the number of preventable cases of CP is much higher and could be addressed if mothers and babies had better access to good medical care, and if primary clinicians had access to better information and tools. That is a problem that we can begin to solve right now.
There is no single test that offers a definitive diagnosis of CP. Effective diagnosis may involve a combination of tests such as a CT scan or MRI (which are not widely available) and clinical assessment (for which many primary care givers have not been trained). The net impact is that CP is often diagnosed too late. That means that children miss the vital care and motor enrichment during the critical months of brain development after birth and, possibly, the opportunity to lessen the impact of CP.
There is a hope, with a new way to assess the risk of CP in infants as young as 3 months of age called the General Movements Assessment. More details about it on the World CP Day website.
While many governments offer healthcare for all, access to specialised therapy is not universally available. There are very specific physical, occupational, speech and cognitive therapies that have proven most successful for people with CP. Even when the condition is diagnosed early, too many of our community members lack access to the therapies they need. Not just during monthly, weekly or daily clinical visits, but for the other 99% of a person's life when they are at home with family members and caregivers.
Clearly, more progress must be made in CP research, but we can also have an immediate impact by simply providing better information to the critical medical and therapeutic specialists that are on the front line of care. Tools and guides that translate evidence for these professionals (and people with CP and family members) that cut through the noise and provide clarity about CP diagnosis and treatment are vitally important.
Access to medical and therapeutic care available is essential to helping people with CP live the best possible life. But the most specialised doctors and therapists will be the first to admit that even the best possible medical intervention can only go so far.
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.
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. The 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 traveller 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 stand-up 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.
Perhaps the single greatest loss in the lives of people with CP - and to the communities in which we live - is the fact that so many members of our community are simply unable to live to their full potential. To make their contribution.
An individual's identity is closely linked to their contribution - the value that they can add to the world. Everyone needs a story to tell about 'what they did with their day'.
This issue does not just revolve around the stereotypical definitions of contribution, such as having a job - although the ability to do so is certainly an important issue in the lives of many of our community members.
Members of the CP community have talents and contributions to make in the areas of art, science, education, and politics. As poets or teachers. As public speakers or engineers. As painters or parents. The kind of contributions that don't just have a lasting impact in the life of a person with CP, but that add profound value to our society.
We must make a commitment to ensure that all people with CP are able to make their contribution. Because it is a matter of personal justice. Because it is a matter of ensuring our community receives the important benefit of that contribution.
It is time to close the gap between the everyday circumstance and the very real potential of those living with CP. To show your support, visit World CP Day website worldcpday.org, sign up for News or, even better, Join Us on the Map!