Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Wednesday, March 25, 2026

Book Review: Vision of the Heart

Title: Vision of the Heart

Author: Mary Crawford

Publisher: Diversity Ink

Date: 2015

ISBN: 978-0692619605

Quote: "We all made a pact to continue to be nurses as long as we could stand with walkers."

But Julia developed macular degeneration first. During the time frame of this story she still sees large shapes and colors, but is classified as legally blind. This is a short e-book in which Julia pushes herself to go to a reunion. Instead of reinforcing her belief that she's become useless, she finds ways to stay active in the nursing field.

It's fiction, but the Author's Note makes clear that it's autobiographical to some extent too. It's not a romance--Julia is happily married with grown-up children--but it opens a series of romances about the younger people in its fictional world. 

Everyone who works with computers daily, feeling the tension between "Looking at blinking boxes is hard on our eyes" and "To a considerable extent computers can replace our eyes," is likely to be interested in this book.

Wednesday, January 1, 2025

Book Review: I Want to Grow Up...

Title: I Want to Grow Hair I Want to Grow Up I Want to Go to Boise

Author: Erma Bombeck

Date: 1989

Publisher: Harper & Row

ISBN: 0-06-06170-1

Length: 174 pages

Illustrations: color inserts of children’s artwork

Quote: “At the moment they stop being a kid and turn into a child with cancer, the smiles disappear.”

At Wit’s End, Just Wait, I Lost Everything, The Grass Is Always Greener, If Life Is a Bowl of Cherries, and Aunt Erma’s Cope Book were hilarious. Motherhood and Family were, just slightly, predictable,and after Family Erma Bombeck reached that dreaded point in a comic writer’s career when the writer is asked to write a whole book that’s earnest and sweet. Dave Barry wisely turned down that offer. Bombeck was persuaded that children with cancer wanted a funny book about their shared experience. This is that book.

It’s funny in spots, but...Laughing out loud, life with cats has taught me, is what we humans do instead of purring; it usually expresses a pleasant feeling and, if that pleasant feeling happens to coincide with unpleasant feelings about something else, the acts of laughing or purring work internal muscles and activate biological mechanisms that make us feel better. People recovering from cancer, and their families, need to laugh out loud, long and often. Funny books, records, and movies help. A humorist has a high spiritual calling in this world.

However, the experiences that prompt laughter in real life don’t always work in books. When you are the patient or the family member caring for the patient, then, in the moment, you can laugh out loud about cancer itself. You scrub the patient’s favorite coverlet in the tub, dry it, get it smelling fresh at last, and within half an hour it’s nasty again. Either you or the patient says “Lather. Rinse. Repeat,” and this becomes the funniest joke ever to use this line, funnier than all other jokes that used this line together, and you roll about and paw the air. But this kind of moment is not meant to be shared. Someone else laughing about your illness or your caretaking is not funny. Someone else’s laughing about their illness or their caretaking is a gross-out.

So this was the one of Bombeck’s books that people bought to complete their collections, or encourage a favorite author who already knew she wasn’t going to have a very long life either, or support the cancer research funds in aid of which the book was sold. I’d pick any of Bombeck’s other books over this one for personal pain control.

In this book we meet children. The last thirty pages of this book are a roll call of cancer patients and their siblings who laughed at cancer in ways Bombeck worked into this book. They are painfully adorable children. They wrote in from several countries where Bombeck had a following, including France as well as New Zealand. Some of them did grow hair and grow up. Some of them went to Heaven, and some even went to Boise. Some of them may still be alive today.

They stick their artificial legs out of doors or under tent flaps to make people think a whole person is watching or listening.

They turn their prosthetic feet backward.

They pour fruit juice into specimen cups, then freak out nurses by saying “I think I’ll run it back through” before anyone runs actual lab tests on these “samples” of sick comedy.

They build snowmen with carrots stuck in their back sides for transfusions.

They race wheelchairs.

They joke about their hair falling out, telling inquisitive people “I joined the Marines,” or claiming that then-popular TV tough guy “Kojak is my father.”

They hug their doctors tight, saying “I hope I never see you again.”

One of them, in full remission and growing fast, shows Bombeck around the campus of the university hospital where she went for chemotherapy. Another one affectionately nicknames one of the best university hospitals in the world “Motel Hell.”

Nearly all the ones we meet had survived, and several had gone into remission, during the time the book was written.

They’re still very, very sick, and their parents and doctors are still very, very sad .(Mothers, Bombeck reports, did most of the caretaking and fretting in 1989. Fathers were “rare birds”; in 1989 a lot of younger men had become those “Sensitive New Age Guys” who cried real tears about being turned down for dates or being late for meals, but fathers still felt a need to reframe grief as anger, growling about how “if some guy was harassing your daughter you could rip his throat out, but you can’t do anything about cancer.”)

And research, of course, helps people with cancer live longer. Donations may be made...pick your cancer research fund; you undoubtedly have one.

Bombeck’s focus on the kids who joke about cancer makes this book less unpleasant to read than I may have made it sound but, if you want to shriek and cackle and make your children want to share a full-sized book with you, pick any or all of this writer’s other books.


Friday, February 10, 2023

Book Review: The Story of My Life

Title: The Story of My Life

Author: Helen Keller

Date: 1902 and many times since

Publisher: Penguin (1988 reprint) and many others

ISBN: 0-451-52447-0

Length: 218 pages

Illustrations: Braille and sign language alphabets are standard; some editions also have photos

Quote: “I like to knit and crochet. I read...I play...checkers or chess.”

Born in 1880, Helen Keller was just learning to talk when fever destroyed her sight and hearing. For a few years adults assumed she couldn’t learn anything and would have to be locked up throughout a lonely, wasted life. Then young Anne Sullivan, whose interest in communicating with the blind probably owed something to the weakness of her own eyes, undertook to try to teach little Helen finger-spelling. It seemed a hopeless task since Helen hadn’t properly learned words, but once Helen figured out that Sullivan was using signs in place of the words Helen had just begun trying to say, her frustrated mind awakened, and her education progressed fast. At twenty-one, despite doubts that she could possibly be answering all the questions and doing all the work herself, Helen Keller had a college degree and had written a book-length memoir about her education.

By the time she died in 1968 I was just beginning to notice the scarcity and poor quality of biographies of interesting women for little girls to read. Bored by Madame Curie and soon to notice the lack of solid facts in a then-popular series of “Childhood of Famous Americans” about whose childhood little was really known, I remember reading half a dozen editions of Helen Keller’s autobiography, each with some “special material”—biography, letters, biography of Anne Sullivan Macy—and finding her story about the most interesting on the “children’s biographies” shelves.

Rereading The Story of My Life as an adult, I find Keller’s Victorian Southern Lady style affected and off-putting—but she was only half grown when she wrote it, so in her memoir as in her early letters, Keller was writing as girl to girl. I didn’t find her affectations nearly as bad as those in some “children’s books” written by people old enough to know better, even when I was twelve or fifteen. Reading the edition that contains her letters, I note that even Keller’s baby sister Mildred complained about her affectations. As a teenager Keller wrote to Mildred “not to blame me for using big words, as you do the same.” Keller’s small words could also sound terribly twee, with lots of belaboring about how good and kind everyone was and what a happy little friend she was to all her correspondents, but she was a late Victorian as well as a child. Allowances must be made.

Helen Keller’s life can be summarized in a sentence, or even a phrase: “deaf-blind pioneer activist.” In a world that takes for granted that all deaf-blind children deserve access to education, Keller no longer seems the heroine she used to be. Do we still need to know the names of all her teachers, tutors, friends, every book she read and place she visited? Is it an unnecessary exercise in embarrassment to realize that, in 1890, many people thought educating any girl beyond the ABC’s and basic arithmetic was a waste of time, many more thought educating children who were either blind or deaf was a waste of time, and most thought educating anyone who was both deaf and blind was simply impossible?

While agreeing that it’s embarrassing, I’ll suggest that children may still enjoy Keller’s account of her own childhood. I know I did. I can’t say exactly why. Adults who used to worry about how to occupy the mind of a child prodigy used to poke the ideas of Braille, finger-spelling, and sign language at my brother and me; we didn’t mind pleasing adults and we enjoyed using finger-spelling as a secret code, but I remember some positive pleasure in little Helen as a storybook character that I don’t feel now. As a child I must have thought she seemed good and kind, which in fact she was. (At one point in childhood she was interested in having a Seeing Eye dog, but postponed that adventure in order for the money to be spent on sharing her dear Teacher with another deaf-blind child.) As an adult I think that, after a miserable embarrassing time of screaming and throwing things in sheer frustration, she overcompensated and became a goody-goody with no noticeable sense of humor—but children will forgive a storybook character for worse shortcomings than that if the character guides them through a good story.

Perhaps, too, my loss of attraction to Helen Keller as storybook character has something to do with having read her obscure adult writings. She grew up to become a writer. She wrote some short pieces, notably the famous “Three Days to See” article, that deserved the success they enjoyed, and some full-length books that deserved the oblivion into which they sank like stones. Her politics were Socialist, her religion was Swedenborgian, and she wrote as if people my parents’ or grandparents’ age took either of those schools of thought seriously. The ones I knew did not. Her other experience was narrowed, hard though she tried to broaden it, not even so much by her being a Victorian Southern Lady as by others seeing her as a freak. She seems always to have accepted that people were likely to buy her books merely because they saw her as a freak, and try very very hard to be a nice, lovable freak.

It remains for today’s more privileged deaf-blind authors to write vividly of their own experience, not just “seeing through friends’ eyes” on a boat ride that the leaves of trees on the riverbank were crimson and gold, but feeling the boat rock slightly when a bird perched on a rail, perhaps, or smelling the fishy mess of the herons’ roost. Helen Keller took the trouble to repeat that the leaves were crimson and gold. (She liked boats; she didn’t try to steer, but as a kid she loved to row.) Nevertheless her autobiography and letters are worth reading once, and probably the earlier in life, the better.

If I were to publish The Story of My Life with “special contents” as a book, I’d want to include “Three Days to See,” which is unfortunately missing from most existing editions. Few things are as likely to stop people taking the pleasure of eyesight for granted as “Three Days to See.”

(One of those things is, however, the subject of this week's post at michellesmirror.com, where the blogger describes how treatment for cancer has caused her vision to come and go. Strictly for brave, non-depressive readers.)

Wednesday, December 28, 2022

Book Review: The Memory Keeper's Daughter

Title: The Memory Keeper’s Daughter

Author: Kim Edwards

Publisher: Penguin

Date: 2005

ISBN: 0-14-30-3714-5

Length: 401 pages

Quote: “My dear, I know nothing about babies, but even I can sense that something’s not right…She’s nearly a year old and only now learning to sit up.”

It was a dark and stormy night in 1964, when babies were normally delivered from fully anesthetized women. Delivering his own twins, young Dr. Henry was reminded of his poor afflicted sister, and he handed the baby who had Downs Syndrome, like his sister, to a nurse with orders to put it in an institution. He would allow his wife to believe it had died. He would spend the rest of his life remembering how much he had loved and missed his sister, and wishing he’d given himself a chance to know his daughter.

Nurse Gill, instead, takes the baby and goes out to find another job, in another city. Putting babies in institutions just seems so, oh, unfeeling. She’s never been interested in being a single mother in the usual way, but she bonds instantly with little Phoebe.

If you are a young woman reading this book, you’re supposed to share Nurse Gill’s intuitive feeling that putting babies in institutions is unfeeling, and the rest of the story—Phoebe grows up, the Henrys drift apart—is supposed to convince you that, if you happen to give birth to a brain-damaged baby, you’re supposed to love every moment of raising the poor little thing, and if you don’t, you might want to run out and adopt one, because brain-damaged children are the greatest thing since sliced bread.

If that sounds like a flippant summary, that’s because I’m not convinced. I am turned off by stories that start out with detailed descriptions of complicated births, for a start. I continued reading this one because I’d heard that it was good. I did not find a point at which I got interested in the story or any of the characters.

Despite some verbiage about Dr. Henry not being an evil man, just a man whose hasty choice gradually ruins the rest of his life, I felt judged.

Our abilities to work with other people’s different combinations of talents and disabilities are as variable as anything else we inherit. I’ve done reasonably well with blind and mobility-impaired people; I’ve never done well at all with deaf or cognitively impaired people. Though symptoms of pregnancy-blocking ovarian cysts appeared in the year older people admitted I might be old enough to consider motherhood, so I’ve never had to think seriously about having a baby of any description, in my gossipy little town rumors used to fly every time a sister or cousin gave birth. (And I have a lot of cousins...hyperfertility runs in the family and, yes, one young lady who looks a bit like me had six babies, the first one born within a month of its uncle, and yes, she was married to its father.) 

One of those babies, who wasn’t mine but whom I was actually seen carrying around, happened to be deaf. While it was tiny, its not being disturbed by sounds was convenient. When it started toddling about and showing how much information it was not absorbing by hearing words, communication with it became one of those exercises in frustration nobody wants to go through, with adults repeating, louder and louder, the words the child just doesn't understand, until the child starts to cry because (it’s not able to say) “Right, now I hear you saying ‘coat, coat, where did you leave your coat,’ but what is a coat and why do I, alone of all the world, not already know this?” Because I felt particularly fond and protective of that child—now a bright, good-looking young adult with job skills and talents, likely to enjoy a long healthy life—I started saying “Don’t send that one to stay with me. Our disabilities clash. It's deaf, and I'm not good with deaf people.” I believed it was an intelligent child with good intentions, and didn’t want to give it any foolish notions to the contrary. I expect I’d feel the same way, but more so, about a child with Downs Syndrome. Would I keep one, if I’d given birth to one? In the alternative world where that could happen, who would the child’s other parent be, would he have better communication skills than I have, what kind of nursery and tutors could we afford?

On another web site, some time before writing this review, I got into a discussion about the “choice” of abortion. I don’t believe a fetus is a person, and if it were a person an unwanted fetus would be a trespasser, and the fact that any fetus is unwanted may indicate that there’s a reason why it's not meant to become a person. Normal healthy fetuses are loved, often given names and rooms, from the moment their existence is confirmed. I don’t know how good for the babies it would be in the long term, but I would find it delightful in the short term, if all the anti-abortion activists in this country were required to adopt some wanted fetuses who have become homeless babies.

I do believe that, statistically, giving birth is safer than having a surgical abortion, and I’ve seen evidence that, statistically, most women who “choose” abortion are bullied into echoing the “choices” their men and/or their parents and/or social workers make for them. So I don’t imagine I could ever have chosen abortion in that alternative world where I might have become pregnant. Daughter and granddaughter of poster girls for live natural birth against all odds, and, more importantly, of devoted Christian parents…If someone had spiked my drink so that I’d behaved irresponsibly on a date, and my date and I had been expelled from our church college, and his parents had threatened my life if I sent him so much as a postcard, and add any more melodramatic details that come to mind, what I could then and can now imagine happening would have been more like the’rents saying, “Here are directions to the home of the relative out West you should visit first, here’s the local lawyer who can advise you on changing your name, here’s a ticket…and call 'collect' as soon as you get inside the house!” It would still have been the 1980s and some mumbling about a short-lived fictional marriage might have been expected, but before the baby was a year old my parents would have wanted to see their grandchild. There were reasons why my natural sister eloped, though her children, plural, resemble their father, singular, but in any case both of our parents absolutely adored having grandchildren. So I have no idea how I’d react to an unintended pregnancy if I’d had the sort of "Eeek, I'm not old enough to be a grandmother, call this doctor, he'll help you get rid of it" parents many single mothers seem to have.

Likewise, I have no idea how I’d relate to a baby who was born deaf. I’m not altogether sure how I’d relate to a baby who even had extroversion, much less Downs Syndrome. In theory parental hormones compensate for a lot of things for both fathers and mothers; in practice, if parents know they’re not going to be able to communicate with a child, putting the child in an institution, or giving it to anyone who wanted it, might be a better choice than keeping it.

In The Memory Keeper’s Daughter the doctor’s emotional feelings about having been unable to help his (older) sister when he was a little boy, and feeling unable to keep his daughter later on, push him away from his wife and son, and the family falls apart, while the nurse just enjoys raising her adoptive daughter. It’s a novel, I remind myself; that’s one way the situation could have played out. Then again, if the doctor, who had had the experience of loving someone who has Downs Syndrome, had insisted that his wife rear their daughter, that might have pushed him away from his wife and son even faster than his unspoken guilt trip did. If he’d married a better sort of woman, however far apart they might have drifted, she wouldn’t have thrown herself at so many other men, would have concentrated on her own career until one day he was able to confess and she was able to say “Oh, is that all you were hiding.” If the nurse, for that matter, had been a different sort of woman, she might have said, one day when baby Phoebe was young, “This is not working,” and carried out the original orders to put the child in an institution. We never know how this kind of complex situation is going to resolve itself in real life.

Being so attached to our own modes of perceiving, thinking, and communicating that we can't work out how to communicate with people or animals who perceive a different world than we do, actually, is a disability. It seems to be common. Justifying it by claiming that it's "normal" to feel that "the disabled" should be kept away from "normal" people, as the Old Left used to do, or used in medical experiments, as the National Socialists recommended, is bad and should be judged harshly. Simply acknowledging it as a disability and trying to give children the chance to be reared by people who don't share that disability seems to be humane. Edwards doesn't seem to recognize that these are two different things. For my relative who lost so much hearing at such an early age to be able to communicate with me would involve person's being intelligent enough to work with my disability, which is possible but not to be taken for granted in those cases where it happens. Helen Keller's genius was not her finding ways to read and learn, but her ability to communicate with the "normal." For me to have insisted on my fair share of time bringing up that child, in view of my disability, would have been inhumane.

Edwards says that her story was “given” to her by someone whose real story resolved itself differently from her novel: the baby with Downs Syndrome was put in the institution and lived and died there before his own mother heard that he’d been born. That baby’s brother grew up to be a man who wanted to “make Downs Syndrome children visible to the world.” That’s not an unreasonable goal.

Actually, before reading this book, I knew a couple who’d been warned that children they had were likely to have Downs Syndrome and agreed, based on their experience of life with people who had that gene, that they could enjoy sharing the short lives of children who’d be lucky to reach a mental age of seven before dying at the physical age of thirty. It’s not a decision I’m sure I want to understand, but since they took full responsibility for both of their Downs Syndrome children it is a decision I respect. Perhaps if Edwards had talked to them, and written about a family that fully accept a Downs Syndrome child, she would have written a story that would read as more persuasive and less judgmental than The Memory Keeper’s Daughter.

Many consider Edwards a good writer; and this novel even has Pittsburgh in it. This is an indication of how thoroughly the book turned me off. Though I like my own home and have no desire to go anywhere else, physically, I enjoy armchair traveling, love the scenery in western Pennsylvania, and have particularly warm memories of Pittsburgh. I found The Memory Keeper’s Daughter, the doctor and his family, so abrasive that I didn’t even feel interested in its descriptions of Pittsburgh.


Thursday, April 7, 2022

Book Review: Handicap This

Title: Handicap This: A Disabled Life Guide

Author: Thomas Whitney

Date: 2021

Publisher: Fulton

ISBN: 978-1-63710-303-6 (digital)

Length: 104 e-pages

Quote: “The author Thomas J. Whitney was born in a small town in Central New York. Shortly after birth, his mother was injured in a car accident which left her paralyzed from the chest down permanently. It was right here where Thomas began to develop the “life is dark, so let it be” attitude. Growing up in a disabled family really taught him some hard values and perhaps overdeveloped his dark humor. Early in 2020, there was a life-changing event, and Thomas became an amputee himself. Life experience has led Thomas to a life of giving back through philanthropies. The main goal of life should be to help each other learn and grow.”

Personally, I felt that this book was deceptively advertised. The Amazon page led me to expect it to be funny. Going by the cover art and the blurb I was expecting a snarky look at the way Americans have and have not complied with the Americans with Disabilities Act. There are jokes, mostly in the first and last chapters, but Handicap This is mostly a study of psychology and philosophy. I paid hard-earned money to study psychology and I’ve never objected to a study of classical philosophy, so I didn’t mind reading the book. It’s just not what I expected it would be.

Well, this web site exists to help my readers avoid being disappointed by misleading cover art. Now we know.

What’s in Handicap This: an introductory rant about the benefits of snarky thinking over Positive Thinking, summaries of some studies about the medical benefits of laughter and sarcasm, a salute to Murphy’s Law that summarizes the life of the real Edward Murphy, more summaries of some studies of the benefits of “organizing” life and work space, some studies of the benefits of having a hobby (which, for Murphy, means something that involves physical activity), and summaries of Plato’s and Aristotle’s advice on the pursuit of happiness.

Edward Murphy, for whom Murphy’s Law is named, was not a comedian (no relation to Eddie Murphy). Murphy did serious physics research and used himself as a test subject, feeling that animal subjects wouldn’t yield accurate results and not wanting to injure other humans. His life story contains a fair bit of irony. Scientists and engineers are encouraged to enjoy the ironic implications of Murphy’s Law and its elaborations in order to think seriously about how any new device or application could go wrong. It’s an approach this web site took to bill reading when we were watching the legislature in session: try to think like a total paranoid, imagine the worst, work with the possibility that some real-life version of Hannibal Lecter wants to use a bill (or a computer or an airplane) to destroy the world. Those who appreciate the usefulness of taking this grim view of things we liked, at first, should enjoy learning more about Murphy. However, Whitney also discusses studies that show some psychological benefit in knowing when to ease off the exercises in pessimism that help troubleshoot any new idea. After a few hours of thinking about how almost any good thing can be turned to bad purposes, it’s nice just to go to the lake, get some exercise, and enjoy the company of friends.

As a serious guide to being a Real Grownup, Handicap This is addressed to Generation X. They may well prefer it to Walker Percy’s Lost in the Cosmos, which delivered a similar message (with a Southern accent) to my generation. Reading Handicap This at fifty...it’s not that I found no new information in this book, because several of the psychological studies discussed are recent ones and I hadn’t read much about Edward Murphy before, but I have read a lot of books that reached conclusions very similar to Whitney’s. So if you read a lot, for you, too, the decision to buy this book may depend on your age.

Then again, as I read my way into the substance of this book, I kept thinking, “Term paper. This section reads like an A+ term paper.” About halfway through the book I found a mental picture forming in my head: Here’s a young man, suddenly disabled, saying “I’ll do something. I’ll write a book. Where's that box of term papers?” I respect that kind of X'er. If I had any money to spare I'd buy a hardcover copy just to encourage him.

Wednesday, October 11, 2017

Petition I'm Not Signing, But I Wish I Were

This is the sort of petition I would like to sign. No question.

Change.org: student wants prosthetic hand

Go ahead and click to read the story, if you like; it's about as sympathetic as stories get. College student, engineering major, loses music scholarship because an accident cost him a hand and he can no longer play in a band. And he thinks a new high-tech prosthesis will solve that problem.

Here's why I'm not signing: Company offered that hope to Right Hand Man, too, not long ago. Epic fail. Right Hand Man did not cry, telling me about it, but he said he very easily could cry. Those expensive gadgets are still experimental, still have some hazards, and still don't work.

Sorry, kid...I hope you can switch to one of the instruments that can be played with one hand and a simple strap-on device to hold the instrument in place. And I hope your school alumni fund come through with a bonus scholarship just for you, in any case.

Tim Kaine's Early Hearing Detection and Intervention Act

From U.S. Senator Tim Kaine (D-VA):

"
I’m thrilled to announce that the Early Hearing Detection and Intervention Act, a bipartisan bill I introduced this year, has passed Congress and now heads to the president’s desk for signature. This bill will reauthorize current research and improve public health programs for early detection, diagnosis, and treatment of hearing loss in newborns, infants, and young children. I know this simple, but important, change will make a difference in the lives of families in Virginia.
"

Thursday, May 11, 2017

Book Review: Take One Step

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)

Date: 1963

Publisher: Doubleday

ISBN: none

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.

Friday, November 25, 2016

Kylene Has Two Children

Because I promised to post it here (for copyright reasons), with an Amazon link to the founding father of its genre:


1

They did a great job with Dad’s Handscreen this time. With the latest upgrade you can actually feel the colors, or where the colors would be, when you zoom to certain degrees of focus: the images feel warmer if they’re closer to white in black-and-white view, or closer to red in red-to-violet. “Isn’t it a thing of beauty and a toy forever?” the guy at the shop wisecracked, showing it off, and it is. I could have spent an hour just looking around the shop with it.

But of course Dad wanted to hurry up and mount it on to his Wheels and go out for a spin. More excitement, I suppose. So we all got on our Wheels and followed him. It was a lovely day; we left all the walls up and enjoyed the cool air on our faces.

Even passing the energy plant, the air felt good. Nobody will ever say it smells good, though, no matter how many rows of pine trees and boxwood bushes and sweet-scented flowers they plant around it. That day the calendulas were positively shrieking their scent into the air but you still know, when you’re passing the energy plant, that they’re burning dung and carrion inside.

“They’re orange,” Mom said, “the calendulas! I can feel the orange! Can you feel it, Kyle?”

“I can’t even feel the calendulas,” Dad said. “It’s not the Handscreen. It’s my hands.”

He stopped walking and sat down. The Wheels kept rolling, of course, on the energy he’d generated. He kicked the brake so hard I could hear it, even behind Mother’s Wheels, even with our Wheels rolling.

“I’ve got a disability,” he said. “I’ve spent twenty years working to eradicate disabilities. I’ve got a disability.”

“You’ll have it eradicated in a week,” Sam told him.

Two weeks, tops, I thought. Dad’s good at that sort of thing.

He cheered up, though, back at the house, looking at Trevor’s latest picture on the Handscreen. He spent a long time looking at his grandson’s face, the way blind people look at things, with their hands.

2

When we got home I think Sam expected, just as I did, to find Trevor in a rotten mood. It really wasn’t fair that the day Mom and Dad picked up the Handscreen had to coincide with his day at school. We’d thought about asking whether he could trade school days with some other child, but that’s always a hassle and they say children need some practice coping with disappointment.

“When Mom and Dad were your age,” I’d told him, earlier that morning, “kids had to go to school half the days in the year.”

“Wotta waste,” he’d said. “What did they do there?”

“Some kind of theory, or experiment—they did all their lessons at school. The whole class. Together. Lockstep. Like they’d put all the six-year-olds in one room and tell them to learn to read, all at once, all the same way. Then the ones who didn’t learn to read that way were told they had disabilities,” Sam explained.

“Craaazy,” said Trevor, blinking up at Sam, who’s never seen such long, pale eyelashes on a kid. Trevor got Dad’s albinism but not his microphthalmia; he sees everything with either or both of his pale blue eyes, doesn’t even need glasses, any more than Sam did at his age. “How did they ever learn to read?”

“Some of them never did,” I said.

The Schoolwheels notification peeped and flashed across the TV screen. Trevor ran out to the porch, jumped on his Wheels, and ran out to hook on to the Schoolwheels with the other children. I wondered whether all twenty or thirty of them had thought of other things they’d rather do than go to school, that day, and whether any of them was not racing his or her own Wheels. They always pump enough energy into those things to coast their Wheels around the neighborhood for the rest of the week, little feet flying, bodies leaning over the sides, looking back and forth, shouting to each other. They always seem to have fun.

“What did you do at school?” I asked.

“Height, weight, finger stick,” he said with more than the usual disdain. “And I got stunned.”

Stoned?” Sam hollered.

“No, stunned,” Trevor explained. “’Cos Leelawadee O’Halloran said I was looking at her too long. So she Belted me.”

“Oh, dear love.” I went over and hugged him, which he tolerated.

He fingered his Belt. “Why do boys have to wear Belts anyway?” I looked at his father.

“Once upon a time,” said Sam, “boys and men didn’t have to wear Belts. For some of them, probably most of them, that worked just fine. Others, however, became violent. Some people said it wasn’t fair to girls to let boys go outside. It wouldn’t have been fair to boys to keep them inside all the time, either. So we men have agreed to wear Belts.”

“It hurts,” Trevor informed him, “being Belted. I couldn’t get up off the floor for fifteen minutes.”

“Not as much as it used to hurt in the bad old days if a guy looked at a girl too long, and her father hit him in the face and knocked his teeth out,” said Sam.

“What does it hurt to look at a person anyway?” said Trevor.

“It’s disrespectful,” I said. “It hurts the person’s feelings.”

“It’s because she had these new shoes that play Wossup Possum videos,” said Trevor. “If I did not want people looking at me I’d get shoes that didn’t play videos.”

I sat very still and waited for the thoughts of violent acts toward an eight-year-old child to leave my mind. When they left I said, “Leelawadee O’Halloran wasn’t showing the best judgment, was she?” I did not say, “What can you expect from a child whose mother named her after a type font?” I said, “Still, those were her shoes. She wore them just to look at them, herself, and not to share them with you. You should try not to look at her any more.”

“So what else did you do at school?” said Sam.

“Just the same sort of thing as last time,” said Trevor. “We ran. We sang songs. We did gymnastics. We looked at pictures of everybody’s projects. We ate corn on the cob and bean soup and the-last-watermelon-this-year, only it wasn’t very good.We started another batch of paper. I guess this is the paper we made last time,” he said, showing off a pad of the kind of coarse unbleached paper kids use at school. “And we did karate, and I flipped Albert Brenner over my shoulder.”

“Albert Brenner?” I said. Albert Brenner is thirteen.

“Sure,” said Trevor. “In karate size matters less than paying attention. That’s the point. I guess Brenner was sort of distracted because of this new pattern for shoes that he’d designed, that he wanted us to make, ’cos shop comes right after martial arts, and that was what we did in shop. We all did different versions of the pattern on the computer first, and then we voted which pattern to put on the shoes.”

The school Trevor attends was named for a wealthy donor, a Colonel Shoemaker, whose father spelled the name “Schumacher.” I’ve often wondered what the Colonel might have said if he’d ever imagined that students would actually make shoes.

Well, now that we have electronic communication systems for most of the things kids study at school and most of the jobs adults do, some people felt that students and teachers ought to see each other’s faces some times. Not too often, of course; turns out that most of the differences that made it hard for people to get along, in the past, were aggravated when people had to do everything in the same room, and smoothed right out when people were working on their own devices in their own homes. So we voted, and all the children at Shoemaker Elementary School go to school one day every two weeks. That’s enough for children like Trevor, or like his buddy, Marvin Kwok; I think any school is probably more than brats like Leelawadee O’Halloran deserve. Anyway, they go to school and do the things children actually did in groups in the olden days: sports, music, shop. The older ones, who’ve learned a bit about how not to waste food at home, cook the meals. It’s meant to be more like a social occasion, a party, even, rather than military service, or prison, or whatever school as we knew it was meant to be like.

3

After dinner Trevor read to us from one of his new books, after his fashion.

“‘Kyle McClintock, a Man Who Defied Disability.’ Like that’s Grandpa,” he said, as if we didn’t know. “Cool! ‘Kyle McClintock was born with only one eye. In those days, all the children the same age in a neighborhood had to go to school on the same day. The ones who failed to learn things as quickly as others did were considered disabled.’ Like you said, Dad. Now I’ll let the Tablet read itself, okay?” He touched a switch.

“Doctors warned Kyle that his one eye was likely to wear out fast,” the mechanical voice read. “In those days most children were taught to read only with their eyes and talk only with their mouths. Although some devices had been designed to help people read and talk with their hands, many of those people were still able to communicate easily only with one another. Computers had flat screens. Kyle bought a very expensive device that translated the letters on a flat screen into shapes that he could read with his hand. The shapes formed only letters in a strange, oldfashioned code. Because he could see the letters other people were reading with their eyes, as well as the images, Kyle McClintock knew how much information he would be unable to read with his hands unless he could invent a new kind of computer screen.”

It’s always a hoot to read what some writer has made out of something you remember. Yes, that was why Dad invented the first Handscreen. More or less. They left out the bits about my grandfather having grown up in an institution because my great-grandmother was blind, and about employers not even considering Dad for jobs, when he was younger, because his artificial eye looked so real that they thought its not actually focussing and seeing things made Dad’s face look strange or untrustworthy. They never do mention that Dad was forty years old before I was born.

By the time I came along, things were a bit different. It was always hard for me to imagine a time when people who had just a little sight, just a little hearing, could get into ordinary schools as long as they “passed as normal” but might be expelled if they admitted they had “disabilities.” In my world disabled students had power; they could demand all kinds of expensive adaptive devices. A real disability was still a real headache, though. Blind people had a way of reading with their hands, and deaf people had a way of talking with their hands—and those were two completely different languages.

Hence the Handscreens.

I remember the first few computer programs that made voice recognition a standard feature. “Epic fails” was a phrase people used. One of the better designed voice-based programs stored everything in the cloud, so even blind people didn’t trust it. Screens were still hard and flat; sound was either turned on or turned off, and most people who could see anything, at all, turned off the sound permanently.

Well, humanity had some evolving to do, that’s all I can say. I mean, I’m glad Trevor can’t remember what it was like. People had become accustomed to rolling around in massive gas-burning cars. Naturally no blind person could drive. So people actually wanted to go through the process of building self-driving cars—what a nightmare!—before they thought about building self-driving Wheels.

No device is perfect. Wheels have been known to fail to follow the courses their owners set for them. Most people don’t want every trip they take in a Wheel to be broadcast around the world in the cloud. However, Wheels are light enough and move slowly enough that, if they do crash, nobody’s likely to be killed. If children really want to see for themselves what it’s like ramming a Wheel into a brick wall, they may have a lot of extra chores to do to pay for repairs, but what it’s like is: your Wheel stops.

And a lot of people thought the only “right” way to make love was to make babies; Grandmother gave birth to five children. Now, of course, when you go to the hospital to have a baby, the Nip and the Tuck are part of the package. People have just had to learn that, if nine out of ten babies are going to live for seventy-five years or longer, there’s no need to keep on making babies just in case something happens to the first one. It’s not really an old saying, although the kids think it is: “If God wanted you to have two children, you would’ve given birth to twins.”

Trevor does know that he had what were called aunts and uncles. One of the aunts is still living. That detail wouldn’t be mentioned in a story written for children. It’s too personal; it’s nobody’s business that my grandparents, crowded though the world was becoming, produced five children.

I think our evolution, as a species, actually benefitted from the plague…

“Then Kyle’s friend and working partner, Rayvon Mathis, died from the plague,” the mechanical voice went on. “At first nobody understood why so many people were dying so suddenly. The human population was more than three times what it is now. Scientists working to solve the problem of how to feed so many humans had experimented with changing the genes of living creatures. When they modified the genes of hogs to make them grow bigger and faster, a virus, formerly harmless to humans, had mutated to adapt to the new population of hogs. The mutation made the virus fatal to humans who lived in crowded conditions. In cities like New York, Rio de Janeiro, and Hong Kong, fewer than one tenth of the population survived.”

Even cities like Baltimore, where we live, lost appalling numbers of people. I remember…

“Want me to skip, Mom?” Trevor asked. He touched the switch. “Now I’m reading to myself, okay?”

“It’s okay,” I assured him. “I can guess what it says, anyway. People who lived in less crowded conditions and kept more to themselves were the ones who survived the plague. After the plague had run its course, people voted to keep the human population nice and safe and sparse. Only one family lives on one hectare of land. A family might mean one person, or two people, or two people with a parent or a child.”

“That’s not what it says.” Trevor punched my arm. “There’s some more about how Grandpa paid for Aunt Bernice’s education, and then… ‘Although many people who had been considered disabled died during the plague, many who had been considered able-bodied were considered disabled as a result of the fever. Kyle himself was now considered blind. His project attracted other engineers who were now considered disabled, such as Charles Rolland and Wayne Gilmore, both deaf, Dave Stephens, a wheelchair user, and Zahavith Rubenstein, who had been diagnosed as autistic’…Now I want the Tablet to read…”

The Tablet went on with the story of the early Handscreens. It bogged down when it came to the contributions of Claudia—“Seidenspinner! Stupid computer,” Trevor said, taking over the narrative. Claudia’s voice is the sound the Tablet synthesizes; it pronounces some words with her accent. She’s a very shy person. I suspect she programmed the Tablet not to recognize her name.

“Handscreens display images of what they scan in a three-dimensional form, allowing users to see shapes with their hands.” The writer hadn’t even heard about the addition of color. “They can also read written words aloud, and translate hand-signed words into written words.”

4

“Look, Mom, a toothbrush!” Trevor tugged on my hand. “A green one, in the gutter.”

“Look with your eyes not your hands,” I said automatically.

We don’t often go to the library. In the olden days, I understand, librarians had to be in the library every day. Now that job, like most jobs, is basically done from home; live-chat screens blur the background while allowing people to see the body language, so I often talk to lonely patrons live from the field where Sam and I raise our vegetables. I can even talk to them live from the shower.

That particular day, I was walking at Trevor’s pace, not even using our Wheels, because it was such a lovely day and in order to create a delay. Someone had tried to remove a real book from the real library. When the Tattletape peeped, my Handscreen alerted me; I set it in live-chat mode, so my face popped up on the screen that swung out from the scannergate as it locked. I said, “Please re-scan the things you’re carrying,” and the person jumped over the scannergate and ran, not apparently aware that the Tattletape would continue peeping, louder and louder, from the book itself until it was properly checked out or properly reshelved. In this kind of situation it’s nice to give the police time to investigate the person’s background, to know what to brace for.

As we walked, the message from the police dispatcher popped up on the screen: Dianne Farbey, age 74, had a police record consisting of two inappropriate emergency calls, within the past three years, both resolved without charges, some minor traffic violations from the years before Wheels, and “trespassing” during a protest in the 1990s. Her official ID photo showed up, as did the snapshot where she was clutching two books and sputtering with indignation.

“Is that the bad person?” Trevor asked.

“Well, I don’t think she seems like such a bad person, on the whole,” I said, dictating the message to the arresting officer, “but I would like to talk to her family along with Ms. Farbey, if that can be arranged.”

It could, of course. Their Wheels reached the library just ahead of us, which was as I’d hoped. When Trevor and I walked in, a woman, obviously her daughter, was holding Ms. Farbey’s hand and trying to reprove a child, smaller than Trevor, who was trying to climb over the scannergate.

I couldn’t resist flicking on live-chat mode and saying sternly, “Please don’t climb on me!”

It worked; the child squeaked and scampered back to Mama.

After the introductions Dianne Farbey made things easy for everyone. “No one was there to check out the books, so I just took them with me, as I’m sure everyone else does! I am not a thief. I had my library card!”

“I’m so sorry,” said her daughter to me. “Mother,” she said to Dianne Farbey, “you run your card through the scanner, now, and then the books. Remember?”

“The what?” said Dianne Farbey. “I had my library card right on top of my book. I always do.”

“I’m very sorry,” I said, and I was. Now we’d spend another year or two debating whether we needed a holographic projection of a librarian standing behind the scanner. I showed her, as her daughter had obviously showed her several times, how the scanner works, and suggested that her daughter accompany her in the library, henceforward.

The officer wasn’t pleased to have come out and not been able to arrest anybody; they don’t have quotas any more, but he was obviously one of the old breed, more interested in some sort of video game he’d had going in his Wheel than in keeping the peace. I’m not too pleased that the Baltimore Police Department still finds jobs for that kind, myself.

“Did you ever see a real bad person?” Trevor piped up.

I blushed, but Officer Grouchy’s voice mellowed. “I sure did, buddy. Down Douglass Street, just Saturday night, we had a blood thief. You know what a blood thief is?”

Trevor knew. “A bad person who cuts somebody to get some blood to fake a finger stick.”  

“That’s right, that’s what they do. And when we find them, we Belt’em so hard they jump up in the air before they fall down!”

Some humans have more evolving to do than others. Anyway, if it helped Grouchy feel better about his interrupted game, it couldn’t be all bad.

“I’m not a bad person,” Dianne Farbey declared.

“Of course you’re not,” I said. “I look forward to serving youall again, the next time.” Dianne Farbey remembered the difference between “you” and “youall,” I’m sure, but she let it go.

On the way back Trevor showed me a dragonfly, a vermilion-red one, and a dogwood tree, a red-violet one, and a garden bordered with early asters, and a bird.

“A robin, a young one, I think a male. But something’s wrong with it; it’s trying to fly and it can’t. It’s old enough to know how to fly.”

“It looks as if it’s eaten a lot of pokeberries,” I said. Pokeberry pulp is messy and tasteless; it’s the seeds that damage the brain, even of a bird.

“Is that cat going to eat it?” my son asked next.

“Not while we’re on the street,” I promised. I could not, however, raise a signal from the cat’s collar.

“It hasn’t got a collar,” Trevor explained.

“What a pity.” The collars they make for cats these days are a treat to watch in action, putting out holographic displays to distract cats from doing things they shouldn’t do and lead them back to where they have some right to be. Still, some cats pull off their collars. Maybe fleas get under them.

“It hasn’t had a collar for a long time,” Trevor said. “See, the fur on its neck…”

“It must be lost,” I said. “Here, kitty, kitty.” I leaned over and wiggled my fingers to catch its attention. It was lost all right; it followed us home.

Before the plague people used to argue about things like whether animals had a right to roam outdoors. Nobody had wasted the city council’s time with that sort of silly argument for years. Nevertheless, two days after we published the news that we’d found the homeless tame cat, DaVernyn O’Halloran published a proposal to round up and sterilize homeless cats in the city. I couldn’t believe he was digging up the same old arguments from the olden days—in one paragraph the poor homeless cats couldn’t survive, in the next paragraph they were going to multiply like flies and wipe out entire bird species, as if there were birds in North America that hadn’t evolved the ability to coexist with cats for thousands of years. Really it was the kind of thing you’d expect from a man whose daughter is named after a type font, wears video-screen shoes to school, and Belts little boys for looking at her videos.

Let’s just say that that proposal never came up for discussion in the council.

5

Since there’s no penalty for having been the owners of a cat that decides to go feral on you, the way the majority of cats did during the plague years, our cat’s rightful heirs turned up later that week.

It was the usual story. Frisby was her mother’s cat, not theirs. He didn’t like their cat, also male, and therefore wanted nothing to do with them, so when the old lady died Frisby went missing. The collar was found, beeping wearily, its battery wearing down, early the next morning. Frisby was nowhere nearby. Cats are safer outdoors than they used to be, since Wheels stop short of any moving thing. Still, Frisby’s heirs had intended to continue feeding him, but they’d never seen him.

We hadn’t had a cat. We had had crickets. So there was no trouble about Frisby moving in with us, and of course the nights were quieter afterward, and I’m sure the rugs are safer.

“I am delighted,” Trevor said solemnly, “that someone in this family is smaller than I am.”

He was a mature cat, maybe all of ten years old, the vet said. He was a blotched tabby, not a mackerel tabby, Trevor said.

I’m not the one paying for a color-enhanced Handscreen. I inherited Dad’s microphthalmia, on both sides, as daughters of men who have it on one side usually do. My eyes, both fully artificial, have never seen colors. People don’t miss what they’ve never had. To me the screen that heats up to indicate white or a pale color felt confusing, disorienting. It would take me a long time to get used to that kind of Handscreen.

And I’ll admit I didn’t really look forward to getting used to having an animal about the house, either. Sighted people think of cats as creatures that purr and catch mice. Blind people think of cats as creatures that dart out under our feet, and if Frisby had tried that I was prepared to kick him so hard he’d fly up in the air before he fell down, whether he could land on his feet or not. But he never was that sort of cat.

“Do you think of yourself as blind?” Sam asked, one night after we were sure Trevor was asleep, when I’d mentioned the difference it makes in people’s attitude toward living with cats.

“Not often,” I said. “Dad would be disappointed…but sometimes I do. I am blind. Totally blind. What I was born with in the way of eyes never saw any difference between midnight and midday. I’ve only ever seen with my hands. It makes a difference when a quiet animal spends its life on a level my hands don’t feel. We never had a cat in the house.”

My parents wanted my childhood to be like Bernice Mathis’s childhood in every way. Dad wanted that so much that he seemed to deny the main differences between Bernice and me. I wouldn’t have wanted Bernice not to have had her eyes, any more than I would have wanted not to have had a father. If he’d thought about it I’m sure Dad would have understood that; he was, after all, the one who reminded me that Bernice had already had her turn to be the age I was, and one day it’d be my turn to be the age Bernice was. But he didn’t want things like beautiful strong eyes, or loving full-time fathers, to make more difference than age did. I think.

“People still tend to become more farsighted with age,” Sam said, later that night. “I wonder whether Frisby’s first human had trouble seeing him under her feet, too.”

Frisby said nothing.

I warned my parents that Frisby was living with us, when they came to visit. He stayed out of the room, though; apparently he was out in the garden with Trevor.

“DaVernyn O’Halloran,” Mom said. “Wasn’t he one of those children…they had Big Brothers and Big Sisters, and Bernice was a Big Sister?”

“The problem child,” Dad said. “The one who confessed that he’d made up those awful stories about Bernice because he was jealous that she was his sister’s Big Sister and not his.”

While dinner was in the oven we watched television. The television’s not hooked into the solar panels like the things we use every day. One person can generate enough energy to run it, but neither of my parents cared to sit around watching me pedal, nor did I care to watch them; I got out the backups, and we charged a few extra batteries while we watched the city council Preview. Anybody can go to the meetings—that’s encouraged here in Baltimore, almost as much by the council members themselves as by the after-business parties—but, in order to speak or vote, you have to have watched the Preview. Most times, after watching the Preview, you decide to let at least one of the council members speak for you. You can pre-vote for that.

This time looked like most times, at first. There was some discussion of changing the commuter train schedule between Washington and New York. None of us rides the train often, so we wouldn’t be voting on that. Someone had reported damaged pavement out toward Dundalk. Nobody expected fixing that to exceed the city’s street budget, so there wouldn’t be much discussion about that. It looked as if those who attended the meeting wouldn’t have long to wait for the party to begin.

Then our council member, Helen Hsiu, said: “I’m being challenged for my seat on this council by my constituent, DaVernyn O’Halloran. He’ll be presenting his campaign platform at the meeting. I find it rather off-putting…for one thing it’s very long.”

“We’ll be going to the meeting after all,” Dad reported, just as Trevor, Sam, and Frisby came in.

“Have you met our cat Frisby?” Trevor said. Frisby let Trevor pick him up and set him on the couch beside Mom. He sniffed at each of my parents’ hands.

“I used to like dogs myself,” Dad said, “when my eye still worked.”

“Oh Grandpa,” Trevor said, “can you see things on your Handscreen now?”

I hadn’t wanted to ask, and Dad hadn’t complained, but he said, “Much better, thanks. I think it was just a matter of getting accustomed to it but my doctor’s changed my supplements, temporarily, just to be sure. Trevor, do you think you can sit through a really long council meeting?”

“’Course I can,” Trevor said. “I can read.”

6

His eyes were still only six years old, of course. I checked to make sure his Tablet was set for large typefonts and loaded with fully illustrated books, just to be sure. I was tempted to check what kind of reading material Marvin had brought, when they sat down side by side, but restrained myself from being so rude to the Kwoks.

Anyway, they behaved themselves, and Helen wasn’t exaggerating when she’d said that O’Halloran’s “platform” was long. Twenty-five different things, the man wanted. The alarming thing was that he seemed to think other people would want any of them. He wanted all kinds of animals, not only cats, rounded up and kept off the streets—claimed it was too much trouble to run his Wheel through the cleaner before bringing it inside. He wanted a ban on hedges, because the Douglass Street blood thief had been hiding in a hedge. He wanted the city to put everyone back on a central electrical power grid, the way they were in the olden days, when if a storm knocked out one panel—well, the equivalent of one panel, whatever that would’ve been—it took out the whole neighborhood’s. He wanted one central instruction program for all the children in all the schools. I think, although my brain was reeling, he’d even said something about a central authority to approve of all publications, before he sat down.

“I’m speechless,” Dad muttered, but when the chair called for comments Dad stood up.

“Mr. O’Halloran may not have been fully aware of it at the time, but when he was born,” Dad said, “the city of Baltimore had many of these things that Mr. O’Halloran thinks he wants. I would never have expected that a younger person would want to go back to those times. My generation worked hard to move society past these bad ideas. But it’s not just the intergenerational insult that concerns me here. Neighbors, most of Mr. O’Halloran’s proposals have one thing in common. They are not grounded in respect for each individual’s freedom of choice. They are as rude, as disrespectful, as extending the traditional closing of meetings from ‘God save us all’ into a formal prayer; a prayer within one religious tradition, say, that petitions specifically for followers of other traditions to convert to the speaker’s own tradition.”

Helen Hsiu started shouting “Hear! Hear!” Of course we all joined in, afterward; even the non-voting section.

“Mr. O’Halloran,” said the chair, after several minutes of “Hear! Hear!”, “I think you’ve heard that?”

O’Halloran looked at the floor like a sulky child.

“Is there any other business?” There wasn’t. The chair rapped his gavel. “God save us all. The meeting is adjourned. Let the party begin.”

Weather not only permitted but encouraged the party to begin out in the street. (We still have wide, smooth streets from the days of huge, heavy vehicles.) As we walked out people started singing:

All Maryland is of one mind, oh Maryland, my Maryland:
Here peace and freedom all may find, in Maryland, my Maryland.
Toward true progress we’re inclined, and meddling will no longer bind
The liberty of humankind, in Maryland, my Maryland.

I suppose O’Halloran was born right around the time our state voted to add a verse people could actually sing, without feeling queasy, to the state song. Helen Hsiu walked up beside us. “It’s a disease, of course,” she said.

“Yes.” Mom knew what she meant. “Control mania.”

“The hard part is persuading people like that to get help in time,” she said. “It’s too bad that he has a child.”

I was scanning the crowd for Trevor; since he hadn’t led Marvin straight to us I guessed he must have followed Marvin to the Kwoks, which it turned out that he had. With them was a girl, bigger than they were, with a lot of very long thin braids.

“Mother, Dad, Grandma, Grandpa,” Trevor recited proudly, “this is Leelawadee O’Halloran from school. Lee, my parents are Mr. and Mrs. Aguilera, and my grandparents are Mr. and Mrs. McClintock.”

We all greeted her warmly, though I’ll admit that uncharitable thoughts came to my mind. I don’t call myself “Mrs. Aguilera,” and hardly recognize that name as meaning me—though it’s hardly likely to mean Sam’s mother, a casualty of the plague, and I do recognize “the Aguileras” as including me—but I didn’t feel like telling the O’Halloran child to call me “Kylene McClintock,” either. I noticed that Mom didn’t mention her name being Michi Hayazawa, either.

“Mr. and Mrs. Aguilera,” recited Leelawadee O’Halloran, “I’m sorry I Belted Trevor and Marvin at school that day, and I’d like to invite them to watch the whole Wossup Possum video on my Tablet. It was only fragments on those shoes, anyway.”

Needless to say we all watched the kids closely—the Kwoks, too—and what d’you think, they behaved perfectly. They watched the cartoon, they sang along when the adults sang, they danced when other people danced. Anybody would have thought Leelawadee O’Halloran was as nice a child as our two.

7

The funny thing, I mean the peculiar thing, was that she seemed to like our two.

“I wonder why?” I asked Trevor, after having seen Leelawadee O’Halloran five times in the next three weeks or so. “Don’t girls her own age play with her?”

“I don’t think there are any girls her age at school with us this year,” he said. “I’m not sure. There are some girls who come on the other Schoolwheels from other neighborhoods; I think they’re more like my age. Then there are three girls who are ten years old. They don’t like anyone who’s younger.”

I still thought it was peculiar for an eight-year-old child to want to play with other children as often as that one seemed to do. I wondered whether her father’s mental condition had anything to do with that.

Dad reported that he was getting better use from his colorized Handscreen by beginning with the unenhanced view, to which he was accustomed, and then checking for light-and-dark and then for color.

“Will there ever be a world without disabilities?” he said rhetorically. “As long as people get older, they’ll have to deal with increasing wear and tear on their faculties, year by year.”

“A world where people accept some disabilities, as they get older, is better than that other way some people wanted to build a world without disabilities,” Mom said.

It’s still mostly a Jewish tradition, but the library does observe a day of remembrance for that, every year; for one week the history material is on display, and some years people bring in pictures of the people who were murdered, some for having disabilities.

“And some things will always be hard to spot, at first,” I said, thinking of DaVernyn O’Halloran.

“Does that child…” Mom guessed what I was thinking.

“At least she seems to have a healthy taste for vegetables, as a snack,” I said as lightly as possible. “Once or twice a week she’s come out to buy some.”

“And lingered?”

“And lingered. At least there’ve been no more violent confrontations.”

“More than one child even living in a house used to be considered normal,” Mother said. “I don’t think it necessarily did all of them all that much harm. I think you and Bernice Mathis were actually good for each other.”

“I don’t think Marvin’s bad for Trevor at all,” I said, “but who knows about the O’Halloran child.”

What she’d told the boys was that her mother was ill.

“There’ll never be a world without colds,” Dad said. “There’ll never be a cure for colds, because the cold is the cure.”

8

I found out a good deal more about the O’Halloran child, not too long after that.

We were all, Sam and Trevor and I, and even Frisby, sailing down the bay to a farmers’ market to unload some vegetables. It was quiet, not much wind, and we weren’t talking or singing, and we heard something that must have sounded just a bit different from the usual seagull noise; different enough that we all concentrated on listening for it, and sure enough, it was a child. So we steered a little closer—and it was Leelawadee’s voice.

Then it stopped. None of us liked the sound of the silence after that child’s cry, “No, don’t,” had stopped.

Sam anchored the boat, quietly. We slipped over the side, quietly, carrying shoes and Handscreen around our necks, and waded onto the shore as quietly as possible. Trevor, as usual, held my hand. Sam didn’t; we lost sight of him. Frisby, having decided at the last moment to come ashore on Sam’s shoulder, bounded ahead of Trevor. I suppose, without meaning to, we let the cat guide us.

But we were the first to hear Leelawadee say, “Mrs. Aguilera’s out there on the bay. See her boat?” She sniffled.

“Wouldn’t matter if Mrs. Aguilera were right here,” O’Halloran said, as we tiptoed up on them. “Can’t you tell by looking at her? She’s blind.”

They were in some scrub bushes near the water. Sam, we found out later, had rushed further in to check a boathouse where he thought someone who was ashamed of what he intended to do might have gone.

“See the Aguileras’ cat,” said Leelawadee O’Halloran.

“See the Aguileras right here,” I said grimly, focussing the Handscreen on her.  “Hello, neighbor O’Halloran. Is everything all right?”

“Wossat on your face?” Trevor asked her. “It’s on your shirt, too. Have you got a cold?”

“I thought it sounded as if something were wrong,” I said, temporizing, thinking of something to say that wouldn’t sound too threatening. I meant to let him be dealt with properly by the authorities. I lied, “There’s a different kind of infection going around town. Not a cold. Treatable. Would you like to go in with us for a finger stick? You’d better come too, DaVernyn, since you’ve been exposed.”

“Is it a bad infection?” Trevor asked.

“It can get bad if it’s not treated,” I said. “If you see anything on her skin or clothes, don’t get close to her. Let the doctor…”

“Get out of here,” O’Halloran shouted at him.

He ran, and I was glad, because you can’t Belt one male and not another one standing within range. As a blind woman I have that switch on my Handscreen, too, as well as on my wrist watch.

“Don’t touch her,” I babbled, knowing exactly what he was trying to wipe off his daughter’s clothes and skin. Of course he ignored me. Of course I Belted him.

So did Leelawadee. Apparently his Belt registered both charges in just close enough succession that he really did jerk up into the air, a few inches, before he came down.

The switch that fires the electric current through the Belt also activates a siren. People are supposed to come to the rescue. Police come, if you’re close enough that they pick up the signal—but we don’t have as many of them as we once did, in Baltimore, and they don’t spend much time along the bay. In our case the person who came to the rescue was Sam.

“Can’t you shut those things off,” he screamed.

“They go for ten minutes,” Leelawadee howled back. “Even the police can’t shut them off.”

We put our fingers in our ears and waited, since it would be illegal as well as hateful to sail away before the police came. Nobody tried to find out where Frisby had gone, either; obviously as far from the horrible noise as he could get. I wondered whether the noise was meant to help incapacitate the victim.

When the sirens shut themselves off at last Sam asked Leelawadee O’Halloran, “Did someone else make that mess on your shirt?”

She nodded. “My father did. He’s the one who’s sick. Not me.”

“Has he done that before?” I asked.

She nodded again.

“Did he threaten to do something else if you Belted him?” Sam asked.

She nodded again. “He said he’d kill my dog. He’s hurt my dog, anyway. He’s probably,” she said, cold-blooded as children can be, “going to hurt Trevor.”

Trevor had sensibly gone back to the boat; but he wasn’t quite big enough to lift the anchor. O’Halloran was starting to pull himself together; he’d slithered several yards down toward the water, and seemed to be trying to get to the boat.

“He’s not going to hurt Trevor,” Sam said. “Why don’t you go and join Trevor in the boat now.”

“May I,” she said, sweet as children can be, “look for your cat first?”

“I don’t expect the cat will abandon Trevor for very long,” I said. “I think you’re safer in the boat.”

Both of us were still hoping to hear a police motorbike, being so far from a road on which a Wheel would roll. Neither of us heard one. I started, not running or dancing, exactly, but walking briskly around in circles, the Text Message Dance, trying to find a signal to send a message: Stunned pedophile on bay shore, help please.

Sam walked down toward O’Halloran. “You are not going to hurt Trevor. You are not going to have a chance. Don’t even think about it. Just sit down.”

O’Halloran turned around and told him, in the foulest terms I suppose he could think of, exactly how he was going to hurt Sam, and then me (“your blind very-rude-word”), and then Trevor, and Leelawadee, and her dog, and our cat, and if any police did show up…

So there was nothing else I could have done. “Sam! Leave him! Get clear!” I sidestepped so as not to point it in Trevor’s direction, either, and let O’Halloran have the charge from the watch. And then we all put our fingers in our ears and sat down again, except for O’Halloran, who was knee-deep in the Bay when he fell.

That time the police picked up the signal.

Sam asked Officer Brisk whether O’Halloran was still alive, not that it makes a great deal of difference to a convicted pedophile. Officer Brisk thought he might be alive; but he wasn’t. DaVernyn O’Halloran drowned in three feet of water.

9

They say it’s boys who never quite get over losing their fathers; girls, like Bernice Mathis, can survive without fathers if they have the other things they need. Lee’s mother, Olivia Brown, wasn’t good for much—her sickness turned out to be the kind that comes in bottles—but Lee wanted to stay with her, and we thought that would be the best way, having their own home while being part of our family; it had worked for Bernice.

I’ve become fond of Lee, over time. Of course you only ever have one child, unless you have some sort of multiple birth, and you never love another child the same way you love your own. Then again, don’t most adults love most children, if we get to know them? Anyway Lee has her own mother.

After we’d all searched and called for more than two hours, we found Frisby, and he let Trevor bring him back home.

I felt bad about O’Halloran, of course, but everyone agreed that I’d had no choice.


“I suppose,” Dad said, “there’s only one way to eradicate some kinds of disabilities.”