No one’s disability is their whole story, but in many cases it plays a big part shaping who they are. My Cerebral Palsy is a part of my journey but not my entire story, it has influenced my experiences, values and beliefs overall shaping me into the man I am today. I’m grateful that I had the opportunity to see the world from a different perspective. I wouldn’t change my disability even if I had a magic wand!
October 6th is World Cerebral Palsy (CP) Day. A day to recognise and celebrate people with CP, as well as advocate for our rights and equal access in this ableist world.
CP is a diagnosis for a physical impairment caused by brain damage, which can limit or diminish a person’s function and mobility. It occurs when the neural pathways in the brain are disrupted, preventing the muscles from receiving the correct messages to facilitate movement. There are many potential causes for this disruption, but in my case, I believe it resulted from a lack of oxygen at birth, due to the umbilical cord being wrapped around my neck.
My specific type of CP is Spastic Quadriplegia, which means that my brain sometimes sends incorrect signals to my muscles, causing them to tighten instead of move. This affects the right side of my body more significantly, suggesting greater damage to the left side of my brain. Over time, I believe this has also contributed to the development of my Scoliosis.
I have never let my CP limit me. Because of it, I have developed an unwavering resourcefulness and resilience in my day-to-day life and it has heightened my empathy towards others. It has never stopped me from doing what I want.
For example, I am an avid chess player and rather than letting my limited fine motor skills prevent me from playing, I created an accessible chess board. On this board, I point to the move that I would like a piece to make and someone assists by making the move physically on the board in front of me. I also used to be a devoted poker player. Since I could not hold the cards myself, a close friend created a custom device for me called the ‘Poker Peeper’ which allowed me to view my cards privately. I followed that passion all the way to the Australia New Zealand Poker Tournament which was held in Queenstown in 2013, where I took home the win. Here is the link to the article if you are curious for a read.
Some other achievements that I pride myself on include running my own mentoring and consultancy business, living independently in SDA accommodation and managing my own support team. I am immensely proud of myself, knowing what I have achieved by not letting any barriers stop me.
My family always treated me like anyone else. My sister and I shared a typical sibling bond and my mum made sure I had the same opportunities as everyone. But looking back, I wonder if our effort to create a sense of normality by not focusing too much on my disability, prevented me from learning how to live with CP in the most effective way for me. For instance, I did not explore a lot of assistive technology that could have helped me earlier on, and maybe even improved my mobility.
There is no right answer for navigating life with CP. In a way, you do not want to focus on it too much that you lose sight of life outside of it, but you also need to embrace it, so you can live with it in the best possible way.
As an adult, I can feel the increased prevalence of ableism in our world. People with disability are constantly marginalised without equal opportunity and for this reason, it is extremely important to have days like this where we are seen, we are heard, and we are recognised. It is important to remind ourselves that we are ok and that we should love and care for ourselves because we deserve it, just like everybody else.
For World CP Day, we need to raise awareness for people with CP, challenge stereotypes that exist about us and fight for a more accessible world.