Coming from within: How an informed lived experience perspective with CP impacts daily activities and belief systems or modes of practice

Jess Silver

Experiencing a situation or set of circumstances, always has an effect on one’s ideas and reactions to another situation or being in a specific environment. This is a notion in today’s society that is particularly relevant to understanding the meaning and complexity of a civic right like disability inclusion. It is for example important for both an organization or company to hire individuals with disabilities to inform the way they function and progress forward in policy development, and it is equally important for individuals with physical disabilities such as Cerebral Palsy (CP) to know that their perspectives, opinions, and expertise is considered validated and applied and that their needs are understood and addressed.

Numerous individuals with varying disabilities both visible and invisible often express the idea that they feel that their perspectives and expertise are not considered when it comes to validating changes to programming and governing policies. This notion is related to areas such as the corporate world as well as to those related to health, wellness, and fitness. Many have stated that they feel as though there aren’t resources, knowledge, or equitable opportunities to engage with fitness and sport in meaningful ways within the mainstream, specifically in Canada. The resources and programs that exist are available and more widely funded until the age of 18, but beyond that they aren’t. This poses a problem that is related to access to resources, but the other limitation is that many feel that they can’t relate to, or meaningfully engage with the programs that are available. There is a sense of urgency and realization amongst individuals that are part of special populations that there need to be opportunities for experiences in fitness created by individuals with physical disabilities for example such as CP, for those with CP but in mainstream environments. It has been recognized that having the opportunity to work with fitness professionals who have CP, for example, provides the following:

• A sense of comfort due to the relatability and familiarity of the condition, adversity encountered and necessary adaptations to programming 
• A new perspective of possibilities and knowledge of resources, equipment and further connections within the community and larger country, or even beyond a specific country
• Working 1-on-1 with a professional who has CP, for example has shown to allow clients of the professionals the opportunity to develop meaningful improvement in their emotional state (confidence, empowerment) and physical ability

Currently within society the emphasis that is placed on authenticity and creating new and meaningful social experiences, needs to translate into the realities of our every day such as those within the context or policy development, systematic policies that impact employment structures and governance and opportunities as well as systems, programs, resources, and organizations that are related to health and wellness. One of the ways to achieve and continually develop progressive programs and policies that lead to experiences like those produced by adaptive fitness, is by creating and building on platforms that include diverse and varying levels of expertise and lived experience and not perceiving this as an isolated demographic or instance where there is a need, but instead seeing and applying it as an opportunity for dynamic change.