Josh, a young adult with cerebral palsy, reflects on the findings presented in CP-Achieve’s recent webinar for My CP Guide
One of the most fundamental aspects of human nature is that we want to belong. This sense of belonging is vital—it is the thing that helps us feel free from judgment, and free to be ourselves. That’s why participation is such an important concept for young people with cerebral palsy.
While all people have different opportunities to participate in social situations, where we make friends and connections with other people, this can be a bit more challenging for people with cerebral palsy or other disabilities.
CP-Achieve has been researching participation experiences for young adults with cerebral palsy with a focus in two major areas;
- Health & Disability Services, and
- Friendships & Relationships
In both of these categories, the most common response from research participants was “Claiming my adulthood and doing life” as most important. This could mean a variety of different things to different people. As an adult in my mid-20s, I consider it from a lens of voluntary disclosure.
I was born as a premature baby, so I was subject to lots of examinations and tests throughout my youth. I was examined by groups of student doctors who would speculate about my diagnoses. When I was older, I would attend ‘gait lab’ studies for research on cerebral palsy.
Participating in this research was not a bad thing in my opinion; I believe it is incredibly important to improve the lives of people with cerebral palsy.
At the same time, the phrase “claiming my adulthood and doing life” means to me reclaiming (or finding) yourself in an environment where your life is not dictated by your diagnoses.
Some young people with cerebral palsy may feel differently about their disability and are comfortable going on to become researchers or staff members at disability organisations, taking an occupation where their disability is the main focus, but that is fully up to the individual and may not be a choice that suits everyone.
In a disability healthcare setting, traditional research has often focused more strictly on clinical outcomes, not the individual’s sense of belonging and identity. This is beginning to change with groups like CP-Active and Oasis (run by Cerebral Palsy Support Network) which have a more social approach. Their focus on participation enables members to be more actively involved, while still advancing research in the context of the Health & Disability Services area examined in this webinar.
The other area of focus is regarding participation in the context of Friendships & Relationships. People may find that this aspect of their life is often self-organised and not necessarily dependent on any club or organised social event. However, these events can be beneficial by providing the catalyst for these friendships to begin.
Some of the most valuable social events are those which are unrelated to disability, where individuals can be themselves with a close-knit group who appreciate them for who they are.
For example, community groups or simply a group of friends.
Personally, I was involved in a lot of groups such as Scouts and performing arts groups. In these groups, I was surrounded by those who were interested in the same thing as me, so this was a really good place where I could just participate as myself without my participation being focused on my disability.
While there are benefits to both forms of participation, and some will suit certain people but not others. There is not a one-size approach as everyone is different and everyone participates in different ways.
Watch the recording of this webinar from an expert panel including members of the CP-Achieve team on YouTube: Webinar – Understanding the participation of young adults with cerebral palsy
Learn more about CP-Achieve and cerebral palsy research at https://www.cp-achieve.org.au/