Written by Maja Sommer
When we talk about life with CP, one story is often repeated: That you have to train, fight, and constantly improve yourself in order to have a good life. But what if that story is not always helpful?
This question has stayed with me ever since I attended the CP Nordic Conference.
At the conference, I heard PhD researcher Olivia Dahl present her dissertation, From Outsider to Crip. She showed an illustration of a square box representing the system, alongside a cluster of balls, asking why they had to change to fit into the box instead of the box adapting to them. For me, that image was very powerful. It illustrates how both I and others can automatically assume that we are the problem because our bodies do not fit into the system.
In the research article The Tragedy of Promising Happiness Through Overcoming Disability, Olivia Dahl and Merete Monrad explore this issue further through interviews with 36 adults with CP. The participants reflect on their childhoods and experiences of growing up with CP to better understand the stories and ideas that shaped them through their parents, schools, healthcare professionals, and “the system”.
Many of the participants describe childhoods marked by training, treatment, and surgery. There was a strong focus on improving their physical function. At the same time, several felt that less attention was given to their social lives, wellbeing, and sense of identity.
Several participants also describe feeling that their bodies were “wrong” – something that needed to be changed. For many, this led to a feeling of never being good enough. When parents, teachers, physiotherapists, doctors, and others continually focus on becoming “better” or improving, if we just do X, Y, and Z, it can send the message that our bodies are not good enough as they are. How can we learn to value ourselves as we are when the world around us is constantly telling us we need to change?
The article also highlights a paradox: the efforts intended to help the participants sometimes created new challenges instead. When the goal becomes being as “normal” as possible, other important parts of life can be overshadowed. The authors therefore argue for a broader perspective. A good life is not only about physical function and the body; it is also about community, self-understanding, and quality of life in the present. It can be about having friends, being good at football, wanting to become an actor, or dreaming of starting a family. These are ordinary wishes, needs, interests, and dreams that all people share.
When I read about the participants’ childhood experiences, it felt like reading about my own life with CP. It brought me a sense of relief because I realised I was not the only one who had felt this way. At the same time, it was difficult to read because it brought back painful feelings: wanting to hide my disability and never feeling good enough, normal enough, or accepted.
You can hardly see my CP, but I still carry these ideas and feelings of shame with me. I still experience them today when I am confronted with the limitations of my disability. For example, I am affected by fatigue quite quickly and need to take sick leave from work more often in order to recover. That can make me feel ashamed because I feel that I cannot keep up in the same way as everyone else and therefore do not meet the expectations of the system.
When those thoughts arise, I think of the image of the square box and the balls. My body and its needs were not made for that box. But that does not mean I cannot work or participate in society. It simply means that I need to do it in my own way.
So perhaps we need to change the story. Perhaps people with CP should not have to spend their whole lives trying to overcome their CP, but instead be allowed to live with it on their own terms.
