Title: Take One Step
(Amazon has a paperback copy. I have a hardcover copy. Both are going into collector prices. If you don't specify which binding you want, you'll receive the one that's cheapest at the time.)
Author: Evelyn West Ayrault (1922-2006)
Length: 310 pages
Quote: “Yes, she’s taken a step…And now, now she can walk!”
Although it’s an adult-size book, Take One Step might be a good first book about cerebral palsy for middle school students. The language is simple, and about half of the book discusses the experience of being a child with CP.
It’s more than a tiny bit repetitious, as the CP patient’s experience is. Little Evelyn learns to do something (walk, tie shoes, ride a bicycle) and feels almost “normal” at last. She is not. She has to concentrate intensely to control any part of her body. The way she walks and talks, especially if anything like a surprise or an emotional reaction breaks her concentration, always call unwanted attention and usually make people think she’s drunk. She seems to be perpetually crossing the same milestones, assessing whether she was or wasn’t jealous of her sister on a particular occasion, thinking she’s doing something ordinary people do one day and having people notice that she’s not doing it quite “normally” the next day, over and over.
This, she explains, is the way CP is. People who want to know about CP should not skip a page. Tedious? Very. Now imagine living it. As The Trouble Bush explains it, there are worse “troubles” than being an intelligent person with CP, but the condition is always going to be a bore.
And yet…many people have what might be considered mild forms of CP and don’t know it. Many people who are accepted as normal, but "such a klutz," have had brain scans that showed very mild degrees of CP-type brain damage.
(I was touch-typing at eight. “Normal” people’s two middle fingers move together; mine move independently, although my ring fingers (by themselves) are weaker and less coordinated than my other fingers. I also have double palmaris longus tendons, and can scratch my own wrists. I have both “gifted" and "trained" hands, until I try to hold two fingers exactly one millimeter apart. Then, more markedly with some fingers than with others, my fingers twitch with tiny but uncontrollable “purpose tremors.” Growing up, I marvelled that a few people I knew didn’t have “purpose tremors” and could tie knots at precise locations in fine wires, while most of us…yes, there was a minor traffic accident in which my mother bumped into the steering wheel, a few weeks before I was born…and yes, although more of the people I know have them than don't have them, "purpose tremors" are the very mildest symptom of tiny CP-like brain lesions. If you have them, the discipline of holding your thumb and finger one millimeter apart may help you understand what people with cerebral palsy go through.)
Cerebral palsy is a wide-open classification for all conditions in which damage to the cerebral tissue in the brain, before or during birth or during the first year of life, affects a person’s control of his or her voluntary muscles. The further along an infant or fetus is at the time of damage, the better the patient’s chances seem to be; if damage occurs after the first year of life, patients seem to have a chance of full recovery. However, the extent of brain injury varies dramatically, so cerebral palsy can mean anything. The whole body may be affected, or only parts may be. Some patients, like Ruth Sienkiewicz, have full voluntary control of only one eyelid; some patients’ arms are affected while their legs are not, or vice versa. Some have stiff, cramped muscles; some have floppy, twitchy muscles.Walking, speaking, eating, even showing normal facial expressions, may or may not be impossible.
Of course, brain injuries are not always confined to the cerebral tissue. Many people who have cerebral palsy also have cognitive, perceptual,and/or emotional disorders caused by their brain “lesions.” However, CP patients have a full range of I.Q. scores. Some are “gifted” and several have become writers.
It was harder in the early twentieth century, when belief in “normal” health and fear of “abnormalities” were rampant in these United States, than it might be now. It might have been even worse in previous centuries, when physical abnormalities triggered superstitious fears. At least, Ayrault was allowed to go to school, although after one bad day in college she was asked to eat in the kitchen because it was "too upsetting" for others to dine with her in the cafeteria. Despite her value as a role model for children with CP, parents thought she didn’t speak well enough to teach or counsel. Even as a middle-aged adult with a business practice in a New York flat, she relied on doormen to explain to people the difference between CP and alcoholism.
At several points, readers may feel like throwing the book across the room. Good lord, you want to shout, wasn’t it bad enough that Ayrault had to live with her disability, without having to live with so much stupidity about it?
The answer is, unfortunately, “Not quite.” CP patients have better days and worse days. Even friends’ reactions to the patient’s symptoms can aggravate the symptoms. I admired the late writer known as Shalecka Boone, and I did manage to help her write, but most noticeably by just going back to school and leaving her free to bang on my old typewriter in peace.
Much has been accomplished since Evelyn Ayrault’s time—partly thanks to her willingness to write about how her practice as a psychologist was affected by “collegial networking” occasions where other psychologists gathered to read each other’s papers, but showed less interest in her paper than in watching the way she walked. At least people are a little more tactful now. At least schools recognize that gifted/disabled students like Ayrault are a positive contribution to human knowledge, all by themselves, and should be welcome at any school.
Yes, but…cerebral palsy will always produce that up-and-down cycle of ability, and it will always be a massive bore.
More enjoyable books have been written by people with milder forms of CP, like My Left Foot, but I think the world still needs this one. At least we all need to read it once.
I wouldn’t tell children to read Take One Step, or Karen or any other CP memoir. I would leave Take One Step on a shelf in a classroom and tell students in grades five, six, and up that it was probably too grown-up for them, because it is. It contains no explicit sex or violence but this book does convey, perhaps better than other CP memoirs do, some sense of the higher-than-average-adult level of patience a CP patient needs to have even to be a kid.
Ayrault no longer has any use for a dollar, so it's ironic that the prices of her books have actually risen. To buy Take One Step here, send $10 per book + $5 per package + $1 per online payment to the appropriate address from the bottom of the page. (Salolianigodagewi @ yahoo is not an appropriate Paypal address; it's the Message Squirrel system that directs orders to the appropriate Paypal account, for which Saloli will send you the address.) Although Take One Step is not a Fair Trade Book, if you want us to send $1.50 to a charity we can send that to www.cerebralpalsy.org . And, as always, you can add as many books to the package as I can squeeze in for the one $5 shipping charge.