Living With Cerebral Palsy Really means
Living with cerebral palsy has been the central identity that has made me different my whole life.
Since I have had cerebral palsy since birth when people ask what’s it like living with cerebral palsy? I don’t have a clear answer.
I felt isolated as a child for being the only person in school using mobility aids. The best part of having cerebral palsy was going to Double H, a Serious Fun camp for children with disabilities from 9-21.
There many were children living with cerebral palsy and had a variety of passions as well as physical capabilities. cerebral palsy literally means weakness in the brain, so your need to adapt is unique.
Camp Life
At camp, I wasn’t living with cerebral palsy. Living with implies tolerance of the affliction or diagnosis. Living with cerebral palsy isn’t something to tolerate.
It is simply a part of my life. Everyone is acknowledged to be different and part of the community at camp. I coveted the time at camp when no one asked what cerebral palsy felt like.
Photo by Kevin Wolf from Unsplash
The importance of community
Suddenly when I hit 15 or 16, the longest conversations people had were about “what do you have?” My resistance to admitting I have cerebral palsy is internal ableism in hindsight. There is nothing wrong with having a disability.
I was stubborn and wanted to escape to a place where I didn’t have a disability. I would be the stereotypical cripple dreaming of walking again. As an adult living with cerebral palsy is not an affliction of suffering. It is an identity like any other. It shapes who I am.
Even if others said they were living with cerebral palsy, I thought subconsciously, “I’m not one of them. I’m normal” I can do so much stereotypically “wheelchair-bound” people can’t.
Internal ableism hindered my ability to identify with others at camp in my later years. However ableist it is to feel like striving to be “better” than my disability, others also felt that need, mainly from the media.
When answering the question who’s your favorite Disney Princess a conversation around the bonfire: Without question, I went with Ariel from The Little Mermaid.
Her dream to walk on land and curiosity about the human world captured me as a child. To my surprise, every person with mobility issues said Ariel.
Mermaids were built for the water, but land poses accessibility problems. There’s nothing wrong. It is just the environment around them.
This connection between mobility aid users was significant. It was a moment where I felt I belonged in the community.