Editor’s note: This post is written with permission from my child. Image is also used with her permission.
A couple of weeks ago I took my middle daughter to the cerebral palsy clinic at Mayo Clinic. We go every six months, and have been doing so for almost 10 years.
My daughter is 13 years old, and I have been pleased by how her doctors address her directly, ask her questions, and consider her preferences. They respect the fact that she is a teenager, and therefore has a say in what is done to her body.
But that doesn’t mean all the experiences she has are positive, because as much as we love her doctors, their main goal is to make her as “normal” as they can. The medical model of disability believes my child needs to become as close to being able-bodied as possible. Disability, therefore, is viewed as something that must be “fixed” or “cured.”
There was a time when I would have said yes to just about any surgeries that promised muscles that are not as tight. But my daughter despises surgery. The work it takes for her to learn to use her muscles again, and use them differently, becomes more and more tiresome the older she gets — and it is painful! So far, she has had four big surgeries, all of them invasive, and all of them taking about a year for her to recover.
As my daughter gets older, I’ve become more and more aware of how, as a child with a disability, she has less autonomy over her body than other kids her age. Since she was little, she’s been poked and prodded and stretched and expected to take it all, removing any autonomy over her body. She has never been given a choice over her surgeries, over wearing leg braces, over therapy. As her mother, I had to make those choices for her and did so believing we were doing what was best. But as she becomes older, I believe it is imperative for me to let her have autonomy over her body.
At the CP clinic, when we met with the pediatric orthopedic surgeon, he said my daughter’s muscles were just as tight as they had been the year before. It makes sense, she has grown taller in the last year, which has created extra tension in her muscles. We were actually happy to hear that despite her rapid growth, her muscles are not tighter, but apparently that was not good enough. The doctor said if her muscles did not improve in the next year, she will have surgery. He said it as if surgery would be the consequence of not working “hard enough” to stretch — a punishment for not stretching. It was presented matter of fact. My daughter does not want to have surgery, and the older she gets, the more we have to consider what that means to her recovery, and weigh in if a muscle lengthening surgery really is worth it if she ends up never regaining the same strength she has now (which is a possibility). Also, my daughter doesn’t want another surgery.
The doctor also questioned her on her use of a wheelchair at school. He said she should be walking more at school, rather than using her chair. I didn’t care for his comment, it felt passive aggressive, shaming her for not walking. He wasn’t considering her safety, or how tiring it is to walk in a large building, or how she either uses all her energy to walk or she uses her energy to learn. When my daughter was brave enough to say she also doesn’t like to walk at school because other kids make comments about it, the doctor said it didn’t matter.
And this is where I drew the line and I was not going to back down.
“Oh… no, no, no,” I said, “it absolutely matters.”
I turned to my daughter, “What you feel is valid, and nobody here gets to minimize it or say it doesn’t matter. It does, it matters, and we will respect it.”
There were three doctors in the room with us, and I pointed at each one of them, “He doesn’t have CP. She doesn’t have CP. He doesn’t have CP. And I don’t have CP. None of us in this room, aside from you, have any idea of what it is like to have CP and be in middle school. We have no idea what it feels like to have people stare at us because of disability or make comments about it. We don’t know and we will not minimize your experiences because they are valid. You want to use your chair in school? You get to use your chair in school. You will be respected as an individual and your feelings are valid. Always.”
They all stared at me. I wondered, based on their expressions, if any parent had ever spoken up to challenge those views. One doctor did say it was true, they did not know what it was like.
I don’t imagine the doctors agree with my approach, but that is okay. I don’t agree with their approach either.
This medical model of disability wants to “fix” my child and make her as “normal” as possible — make her “less disabled.” The social model of disability is one our family prefers — we believe disability is part of how my daughter experiences the world, she doesn’t have to be fixed; what needs to change is accessibility and the ableism and micro aggressions she experiences every day because she’s disabled. We can support her to make things easier for her. We can listen to her — she knows her body best, not the doctors, and not me. She absolutely has a say, as a capable 13-year-old, to make choices that honor her feelings and her experiences as someone with a disability.
She does want to know what we think as her parents. She knows we want what is best for her. I like to believe the trust she has in us is a direct result of us listening to what she has to say and honoring her choices. We are a team. Sometimes, she agrees to try things “our way,” like using clunky leg braces who thought would be helpful. And when she used the braces and gave them a fair try and told us they don’t work for her, they make walking take more energy than usual and make it harder to balance, we backed off. It is a dance; a give and take.
The medical model may think my child would be better off being “less disabled,” but she doesn’t need to change. She does need to know she is worthy, and whole, and valued for who she is, and that includes her disability.