Informed, Educated & Empowered

Informed, Educated & Empowered: What Do We Know About Cerebral Palsy and Where

Our Knowledge Should Lead Us From Awareness To Action

Jess Silver

Both the delivery and receipt of medical diagnosis is overwhelming and daunting. For both the medical professional or clinician and/ or practitioner, as well as the individual and their support system, it’s most important to understand that being informed and having a broad scope of the definition of a condition and ways to manage it, is most central.

What is known about Cerebral Palsy is that it is considered to be the most common neurological condition that babies are born with, but it can also occur later in the early stages of childhood development. It most commonly occurs because of a lack of oxygen and blood supply to the cerebral cortex, and it is non-progressive in the way of degeneration, meaning that it is not a disease or disorder that one would succumb to. According to the Journal of Pediatrics of India and an article entitled “Cerebral Palsy- definition, classification, etiology and early diagnosis”, the condition may present itself in many clinic spectra”, and a lot of the time the cause isn’t easily identifiable. It is also known that there are varying types, such as spastic diplegia, dyskinetic, athetoid and hemiplegic. Due to the fact that there are varying types and the truth that every individual is unique and has different characteristics in addition to the way that the level of impairment has impacted them, it is to be understood that across lifespan one individual’s management will also be different from another.

What most of society learns to understand about a condition that is commonly a physical disability like CP is through an experience with an individual who lives with it, or what is published through research to the mainstream, but this knowledge base could often be generalized and informed by preconceived notions. Currently our society is one that should be prompted to move from awareness to action—action that perceives a physical challenge as limiting in varying ways, but not as defining of an individual and their characteristics as a person and what they contribute to society moving forward.

It is important for the understandings of management to move from a measure of comfort and solely providing assistive equipment to support the individual to by contrast an attitude that considers the individual’s own desires for their highest quality of life along with their support networks, and one where they [the individual] are empowered to contribute new perspectives to Diversity, Equity and Inclusion (DEI) where others don’t solely check boxes stating that they know of an experience like that of an individual with CP, unless that awareness is developed through interaction with them. Prior decades in clinical research most predominantly in North America asserted interventions of orthopedics (bracing), physiotherapy, occupational therapy, spasticity management medications and surgery to be the ones most actively considered in CP management, however now it is time to shift the educational and awareness paradigm to be more non-linear one, where many unique approaches to clinical, whole-person and whole health are prioritized and where considerations of the impact of activities such as recreation, adaptive fitness and sport are more deeply understood and applied to harnessing strategies and perspectives for CP management. This March 25 th on National CP Awareness Day, lets lead from true informed awareness to create change.