Foreword
My husband and I are parents to two amazingly wonderful children, one of whom happens to use a wheelchair. As parents, one of our jobs is to teach our children how to grow up healthy, mindful, and strong. No one prepares you for the tremendously valuable lessons that parents can learn from their children.
At 20 weeks pregnant, we were informed that something was "wrong" with our firstborn. Chloe had multiple spinal issues and we were prepared for the worst. Today, we are fortunate enough to say that we could fill a book with the wisdom Chloe has taught us these past 13 years.
Chloe's young life has been filled with hundreds of hospitalizations and procedures. She has also endured 23 surgeries and lives her life with use of a wheelchair.
On August 10th of 2017, Chloe braved a major surgery on her hips called a bilateral femoral osteotomy with pelvic reconstruction. This surgery was far more difficult on Chloe than any of us expected. Her body was weak and her spark dimmed. Chloe's fragile state forced her to remain homebound from school this year and she missed school life.
Around Christmas time, Chloe's uncle came to visit. Chloe asked her uncle Corey to read a paper she wrote for school titled "Operation Chloe." The paper explained her surgery experiences and the reason why she would be missing her seventh grade year at school.
Uncle Corey is a graphic designer and upon reading her paper he excitedly explained that Chloe should have a website platform in order to share her writing. Chloe and her uncle quickly got to work and together they created the chloejoyce.com blog. He even made Chloe a logo using her own signature.
Almost immediately, Chloe's spark reignited. Since she has been writing, the spark has been glowing brighter than ever. Her blogging has not only lifted her spirits but has also lifted the spirits of others. Her blog often addresses topics that can be difficult to talk about. She has written about the challenges of surgery and the lack of accessibility in public places. She also honestly communicates about life as a person who uses a wheelchair.
One of her favorite blog articles, "Things to Say Instead of Staring," (republished below) opens a candid dialogue on on what to say to wheelchair users instead of staring that them. We are proud of Chloe for being so direct about this topic and hope that more people will begin to transform the "staring epidemic" into natural and dignified socialization.
Chloe is such a vibrant child who has taught our family to live this life as "brightly" as we can. Her little brother, Ethan, has been raised with a sense of compassion that cannot be duplicated. Our family aims to greet each day with love, resilience, courage, and joy. Together, we look forward to what lessons lie ahead.
About the Author
Cari Joyce is a reading teacher by day and a reader by night. She prides herself on her teaching career and being wife to Brian and mom to her two children, Chloe and Ethan. Her goals in life are simple: find joy in every day life while, alongside her husband, raising two children to be positive contributors to society.
Things to Say Instead of Staring
I'm not so scary.
First of all, as a general rule for anyone, DON'T STARE. But please, whatever you do, DON'T STARE AT PEOPLE IN WHEELCHAIRS. I personally hate it when people stare at me. When people stare at me it makes me feel like I am different when I am really not so different than you.
I understand if you stare because you like my gorgeous shoes or my cute outfit or my sparkly wheels. Just please don't stare without saying something. I know my mother always taught me that staring is rude.
I think you'll find talking to people easier, gentler, and kinder than staring. Besides, you won't catch dirty looks from my protective brother, Ethan, if you say "hello," instead of giving a stare. One time, we were at a zoo and a boy about my brother's age stopped dead in his tracks and STARED straight at me. His mother didn't know what to do, so she started walking away. My brother, though, knew just what to do. He stopped, faced the boy, and STARED directly into his eyes until the boy turned and went back to his mother. Yes, my mother intervened and reminded Ethan that staring is not okay. But I think he gave the boy a silent piece of good advice.
So, what can you say to a person who uses a wheelchair?
1. Hello
You got it: "Hello" or "good morning" are common greetings that strangers say in passing. Those are way nicer than scrunching your nose at me in confusion.
2. Cool wheels!
Just like I might compliment you on your shoes, feel free to compliment my wheels or how fast I go. That is way nicer than staring.
3. Ask a question
If you are wondering, you can even ask why I have a wheelchair. Once in a while this happens but it is usually a very young child that is either brave enough or innocent enough to ask. I don't mind answering innocent questions. It's kind of like me asking a little girl, "Is Rapunzel your favorite princess?" just because she is wearing a Rapunzel shirt. The one main questions I always get is "Did you break your legs?" That's just ridiculous, but I understand your confusion. Ask me anything but that.
Staring doesn't completely bother me. I can keep going throughout my day without feeling annoyed because I am used to it. There are lots of reasons people might use wheelchairs. Don't bother trying to figure out that reason... there are just too many. Instead, just know that I am a fellow human being. I don't like being invisible and I don't like feeling that I stick out like a sore thumb. I do like when you notice me in a kind way. Get to know me and we will have lots to talk about.
About the Author
Chloe Joyce is a courageous and kind 13 year-old. She loves hanging out with her friends and her younger brother, Ethan. Chloe loves all things that inspire creativity such as blogging, music, quilting, crafting, and drawing. She loves to decorate her wheelchair according to holidays and seasons. Math is her favorite subject, although she loves all learning.