My daughter’s first wheelchair arrived a few weeks ago, following several months of supply chain delays. Luckily, she was in the seat in time for her school’s field day. All her friends wanted to ride in it. Katie was beaming with the attention she received. I was grateful that her wheelchair increased her popularity instead of creating a larger perceived difference between her and her classmates.
Her second-grade class was wonderfully supportive of her, helping her manage tasks that her disability makes difficult. She was sad when school ended, grieving the loss of friends who were moving away, grieving the loss of a comfortable routine with familiar faces.
Her friendships at school, as well as her relationships with April, me, and the rest of her family, will always be impacted by the undeniable difference between someone with a disability and someone without. I wish it wasn’t this way. I don’t believe this difference hinders my ability to have a meaningful father-daughter connection. But, there will always be parts of her identity that I can’t experience.
I forget this truth sometimes. Although our lives are tightly scheduled and managed around medical needs, often her disability fades to the back of my mind, and she’s simply an outgoing, boisterous seven-year-old who likes JoJo Siwa and Kids Bop Radio and stuffed animals and stickers, and hates in anytime I sing or dance.
I have the convenience of forgetting our fundamental difference in life experience. I can go hours a day lost in my work without dealing with the burdens of ableism. I don’t need to field intrusive questions about my body and uneducated assumptions that something is wrong with it.
This week, my daughter participated in Wheelchair Sports Camp at a local high school. Today is the last day, and I am sad and grieving.
I watched my daughter spend significant time playing with other kids with disabilities. It was remarkable to see how comfortable she seemed in her own skin. While she’s typically outgoing and friendly, she was absorbed in a way I hadn’t witnessed before.
She met other friends with spina bifida and friends with other disabilities. Many of us who caretake people with disabilities have at least a fleeting compulsion to compare who has more significant disabilities and who has disabilities that are not as severe. It’s easy for me to meet a nonverbal kid in a motorized scooter and think of the differences between her and my daughter.
This week, I observed that my daughter doesn’t see these sorts of differences first. Of course, she’s aware of them, but it was obvious that she chiefly sees a friend, someone she has something in common with that my daughter doesn’t share with her school friends or her family. She immediately began asking about and learning the signs that her new nonverbal friend used. She asked about and quickly learned all her new friends’ ages. There was an instant bond.
Last night, she had me print slips of paper with our number and address to hand to her friends. And this morning, before I had left the gymnasium, she had handed most of those slips of paper out.
This week has been a profound experience for both of us. To me, I can better understand that her tribe, other kids with disabilities, will and should always have a connection that I cannot have with her. And it makes me both sad and grateful.
When I dropped her off in the mornings, I felt like I was returning her to her family after borrowing her. I have been delighted when I pick her up to remember I am still very much her father, that we are really family. And, I am more motivated now to ensure she can spend more time with her friends with disabilities.
This morning, there were three kids at the camp – my daughter was one of them – who wrote on their nametags “Trouble.”
My daughter’s new friend Meg was Trouble #1. There was another friend with spina bifida and a wheelchair and crutches just like Katie’s. His name was named Trouble #2.
Katie was Trouble #3. I do not know what maleficence earned these kids their respective nicknames. I don’t need to know.
