My daughter is an able-bodied, lithe and muscular seven-year-old. She climbs, hurdles, swings and leaps over anything in her path. She is a self-described, “half monkey, half goat, half child.” Yet, since she was two or three years old, Rose has been fascinated by wheelchairs and crutches. When she was younger, she loved to play with her little wooden doll cart, but not to push around her dolls. Instead, she would sit in it and direct someone to push her where she wanted to go.
Over time, she learned to propel and steer herself around using her hands on the rear wheels. Sometimes Rose would sit in a chair turned upside down, her torso pressed against her thighs, as she imagined that it, too, was her wheelchair, informing us of the various things she could and could not do.
“My legs don’t work, but I’m the best horseback rider and gymnast in the world!” she’d say. Or,
“I can’t clear the table because I’m in a wheelchair and I use my hands to move the wheels.”
Rose also had a strong desire for a pair of crutches and we spent months trying to find a pair for her to incorporate into her play, but came up short several times. One spring day last year, our family went to a plant sale at a friend’s farm. There was a misty rain which turned into a steady downpour by the time we were loading up the starter plants into our van. Still in the thick of the pandemic, we decided to take the scenic route home to pass the time and look at the farms and houses situated along the winding Huron River. Out on a curb in a pile of discards and give-aways, we spotted crutches. My husband turned around, quickly inspected the crutches, deemed them worthy and, drenched in that short minute, hopped back in the van. He spent the rest of the afternoon in the garage with Rose where they worked with a hacksaw and file to custom fit the crutches so that they would be the perfect size for her.
I was astonished to later discover many stories from parents of PDA children relaying that their children play similar games where their legs don’t work. Perhaps it is a clever way to avoid a demand and save face, or perhaps a deeper recognition of one’s disability but finding it easier to identify with one that can be seen. This clearly was yet another remarkable theme coming up for more PDA children than just my daughter.
Rose’s intuitive interest in difference and disability extends beyond physical mobility. She is continuously learning about different kinds of disabilities and deeply appreciates hearing stories about people such as Ray Charles, Beethoven, and Helen Keller, all of whom have famously faced great challenges and gone on to make an enormous impact in the world.
Recently, our library began assembling large heavy canvas bags filled with books that the librarians select based on different themes of interest, which are hung on a long row of hooks near the check out. A few weeks ago, Rose and I were there at our newly reopened library and browsed the labels on the bags. We saw one marked “disability” and were so happy to check it out. On the way home, Rose was excited to preview the eleven books and asked me questions about the different characters she saw in the illustrations. Though we’ve talked about it before, I asked her,
“Rose, did you know autism is considered a disability too?”
“What’s that?” she said.
I explained how it’s a way that a person’s brain works, that it could mean someone might be really good at focusing on particular things they are interested in, or that they might be particularly sensitive to experiences in their environment... I started to give a few more examples, and she stuck with me for another minute, but then went back to her perusing.
That night, after her brother was in bed and Rose had just finished reading one of her new books with her dad, she told me how hard it is for her to be around Danny.
“I just hate him!” she said... and then corrected, “Well, I don’t hate him, it’s just so hard to be around him. I try so hard to be good and it gets really exhausting.”
“I know”, I said. “I’m so glad you can tell me that. And I see how hard you’re trying, too. I’m trying my best to give you as much space from him as possible, but I can’t always do it.”
“I know, but it helps to be able to say what I need.”
Through brushing teeth and finishing the drawn-out process of getting ready for bed, I added,
“You know, when I was young, ‘disability’ was considered rather a bad word, or a word you shouldn’t say out loud or only whisper. I think that’s changing now because people are realizing that talking about differences isn’t a bad thing. It’s great to be different. And it’s great to be able to say what you need when you need it.”
The conversation that night struck some of the deep anguish I have felt when Rose has said at times that she “was born broken” and that I should just chop her in half because part of her is so bad. But it also reminded me of her growing self-awareness, of the times when I notice my daughter become more aware of her disability.
This has been a long, difficult process for both of us, especially because of the invisible and fluctuating nature of her disability. But ever so gradually, she’s been shifting from a negative self-image to one of more neutral acceptance. And sometimes, I notice that there is genuine pride there, too. I have heard adult PDAers speak with love about their own identities and neurotypes and it has given me something to reach for. And there have been days where I have wondered how loving this identity can be possible when the challenges associated with it have been and can be so great. While ramps can gain access to a building for a wheelchair user, I wonder and worry what accommodations will be necessary and possible to help my daughter move about with more freedom.
By honestly holding these questions, I am humbly finding how it is that through these places that feel so broken, or “chopped in two,” this is where the light comes in; how through stripping my life down to the bare essentials and focusing on surviving each day, what is really worthy and valuable is coming clearly to the surface.