ACCURACY AND/OR PORTRAYAL ISSUES:
Amy says she wants to help Matthew with his OCD just to see if she could because she's "never helped anyone before" and it's "awful always being the person who needs help."
This is something I could have put in the ableism section but chose not to because, to me, it really speaks to a deeper portrayal issue and biases the author carries. People with CP can help other people.
I'm sure Amy's given helpful advice to someone at some point, or recommended something online for someone else. Help doesn't have to be physical for it to count. I feel like that's a preconceived notion that a lot of able bodied people have. And so, too, with the author, perhaps. She might carry the assumption that Amy has never helped someone else in her life and is this awkward and offensive with Matthew because, in all her seventeen years, she assumes she has never helped anyone.
Matthew thinks that it was like Amy was never scared of anything. He says, her starting school in second grade was "no problem."
Why wasn't Amy enrolled in school in kindergarten? This means she missed fundamental moments in her schooling, which were super focused on socializing. For a kid born in the late '90s I'd think educational neglect would be on the radars of local schools. What did Amy's mom do with the kindergarten and first grade open house letters? Get rid of them? Assume Amy was smart enough to just be fast tracked into second grade? Start her student career at seven? My mind is blown here.
He also says that not being understood until fourth grade was "frustrating but not particularly scary" for Amy.
I'd like to ask him, how do you know exactly? And does the author get how harmful a characterization like this, of a person with CP, is? It feeds the ableist narrative that we are emotionless and not human beings.
Continuing in this thread, Amy tells Matthew the story of when she was excluded from the science fair because of a teacher's ableist assumption that she had not done the work herself. Amy claims it "didn't bother her," though it bothered her mother strongly enough to complain because if not the teacher would "continue to exclude every disabled kid coming up behind Amy."
Amy wants to help Matthew with his OCD by giving him "assignments with just enough germ exposure to make him uncomfortable." She then proceeds to talk to him about period stains, which is quite personal, and gross. Doing this to intentionally trigger his OCD in order for him to "get better" is not that far from the way Amy's mother raised her, with all of her ableist demands. It makes me cringe, though, because no one likes to feel like someone else's project to fix.
Matthew says as much and Amy says she "hates herself sometimes, too" that she feels stupid since other people can talk and she can't. She also insists that she is not fixing Matthew, she says she's "helping" him, and isn't that the way a lot of ableism masquerades?
Amy shares with Matthew that her mom made her practice walking "four or five hours a day through the first six years of Amy's life."
Does that sound excessive and exhausting to anyone else? Maybe not to the average toddler, kindergartener or first grader, but when it's a skill that she has to work so hard for, it's beyond a mom wanting what is best for her child. You wouldn't make an able bodied child practice a skill that took them five times the energy it took you for five to six hours a day for years, would you? No, because that sounds totally unreasonable.
I'm not saying kids with CP don't need to exercise and maintain mobility etc. But if it takes us five times the energy to do something an able bodied person does, no sweat, wouldn't it make sense to practice, say, ten minutes at a time, three times a day. That's half an hour a day, which is the recommended amount of exercise for the average person. Five to six hours just feels incredibly excessive.
Amy says she "doesn't approve of everything her mother does," but she taught Amy "not to be afraid of hard work," and that it's "supposed to be inspiring." What?
This next part is the single part in the book that made me shocked that this book was ever printed and okayed for a young audience: Matthew then remembers another story Amy has told about her mom. Doctors told her Amy would never learn to "walk, talk, or lift her head." So Amy says her mom "put me face down in the bathtub with about an inch of water in it" when she was five months old.
Matthew points out that she could have drowned, and Amy says: "But I didn't! I learned to lift my head."
I have no idea how something like this is framed as even remotely okay. Like, it's fine that her mom put a medically fragile five month old (so, about the age and size of a three month old, given her prematurity) with an unreliable airway face down in a tub with an inch of water in it.? No! It's chilling. It's scary, and shocking.
But Amy, with her one-dimensional characterization just says it made her learn to lift her head. Pretty sure there are so many other ways to teach your baby this skill, Nicole. Teaching her motor control should never endanger her life.
In all the reviews I have read, no one has ever mentioned this excerpt, which is so troubling to me, because once I read it, I could never forget it. It chills me, and even more so, that it is ultimately framed as something so positive. This is nearing the worst possible ableism there is and Amy is totally fine with it.
- Published Works
- Favorite Posts
- Interview with Ellen Stumbo: Growing Up With a Disability
- Contact Me
- All About CP and Me (Free eBook)
- CP Survival Guide
- Video: How and When to Talk to Your Kids About Their Disability
- Place Blindness and CP
- Video: What You Need to Know About CP
- Disability on The Fosters