Too often, people with disabilities are relegated to being passive when it comes to the arts.
Growing up with Cerebral Palsy I often wondered if I would ever experience my happily ever after. The fairytales my mom read me always followed the life of a beautiful princess falling in love with a handsome prince. You never read about a prince and princess in wheelchairs or with any type of disability for that matter.
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
An international study recently published in the journal Nature Genetics has provided the first firm evidence that for a substantial number of people, their cerebral palsy (CP) may be caused by a genetic mutation, or mis-spelling in the body’s DNA blueprint.
"In addition to commonly associated environmental factors, genomic factors may cause cerebral palsy. We performed whole-exome sequencing of 250 parent–offspring trios, and observed enrichment of damaging de novo mutations in cerebral palsy cases."
I spent many years and many hours learning how to make the body work better, how to bring it out of pain. But that's not the human being alone.
Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Depending on the part of the brain that is injured depends on how someone’s muscle tone will be effected. For people with spastic CP they have increased muscle tone because of the part of the brain that's injured. If causes very tight muscles which in turn effects the movement of the joints and of the limbs. For others who have dyskinetic CP they lose the ability to have voluntary control over their muscles, and they can have jerky and uncontrolled movement patterns.