March is Cerebral Palsy (CP) Awareness Month and the butterfly is the symbol for it. It makes sense because we are butterflies but our wings are usually clipped by society. Sure, we have limitations. For me, I have a lot of limitations because of my CP but I don’t like to focus on them. I like to live life. However, I have seen just how much humanity can clip wings with their ableist views on a virus that is killing people, especially us with cerebral palsy, who are high risk due to the muscles in our mouths, throats, and core that negatively affect swallowing and breathing. Even though I have become a “shut-in,” I truly try not to think about what I can’t do. It’s a bit harder, but this is not something that I choose to feel sorry for myself.
I do, however, try to relate to people why we are the way we are in this current situation. I require care 24/7. My husband does it all with zero help even if he is really sick or really hurting. He has no choice. Here’s a post I wrote about cerebral palsy last year.
It isn’t just now that society has clipped my wings. I had to prove myself from Day One. They didn’t think I would live (and really, I shouldn’t have with not breathing for 40 minutes), and if I did, I wouldn’t amount to much. I was in the NICU for almost two weeks.
Growing up, I had to prove myself to teachers and my peers. I was always the first person with severe cerebral palsy to do anything. I was finally allowed to be in regular classes when I was in 3rd grade. Even into college and grad school, I had to prove that with the correct accommodations, I could successfully complete the early childhood education program.
Even though I have spent most of my 40 years in school to have a career helping children and families, I still have not been able to get that career going like my peers have and I do have some shame and anger about this. But I’m refusing to give up.
Also, most people have no idea that the adaptive equipment I need isn’t cheap. It’s extremely expensive and I remember my parents fighting with their insurance companies that I had a medical need for a toilet chair or a bath chair or a wheelchair. Now I’m forced to pay for these things out of pocket and I had to have a Go Fund Me for my wheelchair in 2014 after my 19-year-old chair was so worn that the plastic was hurting me with no more padding.
There’s so much of my life that people don’t see and I want to be seen as a competent person who has unique needs. I still have to prove that I am a competent person because some people automatically assume that I am intellectually disabled. I love how children freely ask me questions and want to understand what is going on. Young children don’t judge me. They are curious. Older children can become bullies and I want to prevent that. Then there are a lot of “little me’s” that need another book that they can read and look at the pictures.
For me, growing up, the only book that I could relate to was called, Howie Helps Himself. The only problem was that they had him in a standard wheelchair, and at the end of the book, Howie pushes the wheels of his wheelchair to make it move. It kind of made me feel bad because I never was able to push myself.
My book shows my wheelchairs with my supports. It shows how I am able to do some of the same things that everyone else can do like love and feel and be a friend. It also shows real life things that I deal with every day such as knocking stuff over, being fed, falling over and needing help to get back up, people treating me as a “child.”
I truly believe that this book will help teachers and families teach children about disabilities and differences as well as similarities. It will also give hope to children with cerebral palsy as well as their parents and families.
Unfortunately, people like me are prey for people who think they can manipulate and use me until they reveal their true colors to me and I, and they, walk away. Thus, I have been ripped off twice now trying to get the book illustrated. I am an honest, caring, trusting person and I paid for each illustration as I approved them. All of the illustrators were people we felt close to and truly trusted. Lesson learned.
For Cerebral Palsy Awareness Month, I am asking for more people to help open butterfly wings by participating in a CP Awareness Month Facebook event and to please share as well as donate to my Go Fund Me page to keep raising the money we’ve lost in order to pay my new illustrator. I don’t know the illustrator and the contract is extremely specific. I have learned to guard my heart and my wings because I’m a free spirit. The illustrator will be paid after everything is completed and approved.
I want to open more wings despite the limitations.