Not a Poster Child: Living Well with a Disability-A Memoir

Not a Poster Child: Living Well with a Disability-A Memoir

by Francine Falk-Allen

Paperback

$16.95
View All Available Formats & Editions
Members save with free shipping everyday! 
See details

Overview

2019 Living Now Book Awards Gold Medal Winner in Inspirational/Memoir (Female)
2018 Sarton Women's Book Awards finalist in Memoir
Kirkus Reviews ' Best Books of 2018
2018 Sarton Women's Book Awards Silver Medal in Memoir


Francine Falk-Allen was only three years old when she contracted polio and temporarily lost the ability to stand and walk. Here, she tells the story of how a toddler learned grown-up lessons too soon; a schoolgirl tried her best to be a “normie,” on into young adulthood; and a woman finally found her balance, physically and spiritually. In lucid, dryly humorous prose, she also explores how her disability has affected her choices in living a fulfilling (and amusing) life in every area—relationships, career, religion (or not), athleticism, artistic expression, and aging, to name a few. A clear-eyed examination of living with a handicap, Not a Poster Child is one woman’s story of finding her way to a balanced life—one with a little cheekiness and a lot of joy.

Product Details

ISBN-13: 9781631523915
Publisher: She Writes Press
Publication date: 08/07/2018
Pages: 376
Sales rank: 795,227
Product dimensions: 5.50(w) x 8.50(h) x (d)

About the Author

Francine Falk-Allen was born in Los Angeles and has lived nearly all of her life in northern California. As a former art major who got a BA in managerial accounting and ran her own business for thirty-three years, she has always craved creative outlets. Over the years, this has taken the form of singing and recording with various groups, painting, and writing songs, poetry, and essays, some of which have been published. Falk-Allen facilitates a polio survivors’ group in Marin County, and also a Meetup writing group, Just Write Marin County. She was the polio representative interviewed in a PBS/Nobel Prize Media film, The War Against Microbes.

Falk-Allen resides in Marin County with her husband, Richard Falk. She loves mystery, and historical novels, and captivating biography and memoir, movies, music, pool exercise, the outdoors, travel, hanging out with good friends, lots of British tea, and a little champagne now and then.

Read an Excerpt

CHAPTER 1

when I was a normie

It's my birthday, and I'm three years old today! I'm running down the sidewalk on our street, West 109th, in our middleclass neighborhood in Los Angeles, near the edge of Gramercy Park. A northern leg of Westmont — later to become owned entirely by black and Hispanic folks. But today it's a very Anglo place to live, and kids are coming over to our house for my party.

In early December 1950, it's a little warm out in southern California. I'm wearing a full, very short, ruffled chiffon dress my mother made, and a round, flat, gathered paper hat set at a jaunty angle on my head. Mama is a remarkable seamstress, and her sister, my Aunt Marie, used to sew professionally, as a member of the garment workers' union.

I cannot tell you, sixty-some years later, why I am running, or why I'm out on the sidewalk without an adult. Possibly I escaped ... something I will spend much of my life doing, until I hit forty or so. Maybe I'm running with a big birthday present I was excited to receive; I remember a box with a fat, overstuffed doll in it that I decided to call Ollie Dolly after the children's TV puppet show, Kukla, Fran and Ollie. Or maybe I'm just gleeful that it's my birthday. My mother will later tell me that when I was even smaller, I would steal cut lemons from the bottom of the fridge and scoot away in my Taylor Tot stroller, refusing to give up the lemon, although when I sucked on it, I puckered my entire face.

That day, high-tailing it down the sidewalk, is the last recollection I have of ever running, and I never want to forget it, which is part of why I am telling you my story now.

* * *

When I was perhaps in my thirties I told my mother about another early childhood memory: I was out in the backyard, alone, and eating a somewhat fresh banana skin out of the garbage can. I might have been quite hungry, but maybe I was just snacking or curious. Planes flew low overhead and scared me. I ran and hid under the stairs, stairs that were too steep and high for me to climb and get into the house. I put my hands over my ears. I was crying and afraid.

Decades later, Mom looked at me in disbelief as I recounted this story. "You were only two years old then!" she exclaimed, then turned to stare out the window and watch the smoke from her cigarette waft around her kitchen. We both took in the thought that she had left me down a long flight of stairs alone at two, expecting me to play in the backyard, and instead I ended up eating banana skins out of the stinky garbage can.

Throughout my childhood, Mother would proudly say, "You played so well by yourself as a toddler, you always did." When I shared with her the memory about the planes going over and being alone down in the back yard, I could tell she was stunned by the knowledge that I could remember back so far, and I suspect she wondered what else I could recall. I said nothing.

"We lived near the airport," she eventually continued, "and the planes flew low over our house when they took off."

My dad was a milkman, with his own small business, and my mother didn't work. We were renters. The people across the street, the Murrays, might have been owners. They had two little boys I played with all the time.

We dropped this adult conversation, but it was a moment of revelation for us both — for me, confirming a certain sense of distance my mother always conveyed. My mind had raced after hearing her response: How could you leave a two-year-old alone in a backyard? I wondered. How could you let a toddler eat out of a garbage can? Is this what it meant to "play well by myself"? Did you know I was down there crying and afraid? Did you come down and get me?

I didn't want to ask these questions of her.

* * *

At my third birthday party, there is a fantastic big black papier-mâché spider with black pipe cleaner legs that Mama made as a centerpiece for our large, dark, heavily ornate dining room table. The spider scares me, though it is comical; even in my shortness and inexperience, however, I can appreciate the ability it took to make it.

Accompanying the spider is a storybook doll we all know is Little Miss Muffet, my nickname. My parents started calling me "Miss Muffet" affectionately when I was a month old, and everyone will call me that or "Muffet" for all of my childhood, except at school. Eventually I will see the irony in my fear of real spiders, though my parents thought only to call me something cute.

The spider and the nursery rhyme theme are a hit with all, especially the mothers. Mama receives all the compliments graciously, tilting her head to one side; how wonderful that she's made something so amazing for her little girl. I don't think she realizes how frightening the spider is to me, and even if she did, she would only laugh and tell me it's not real.

This is the last hurrah before the virus comes. This is the last day I can remember being a "normie," which is what the "crip" community, a handicapped veteran will tell me some forty years later, calls non-disabled people. It's a kind and affectionate way to say "fully abled, innocently unaware of the stuff we experience" and leave out the envy, regret, or wistfulness we might feel.

CHAPTER 2

taken from home

A few weeks after my third birthday, in early January of 1951, I was sick. My feet hurt. I was in my crib — I still slept in a crib, probably to keep me in bed when I should be — and on my knees, crying in the night, calling out over the crib bar, "Mommy, my shoes hurt!"

I recall sleeping in my shoes. My mother later said I never did, which perplexes me, though she is the one who told me (when I was in grammar school) that I did say these words, "My shoes hurt!" I'm guessing that my feet felt like I was wearing shoes that fit too tight. I knew the word "shoes" and I also knew the word "feet," so I must have been saying what I believed to be true. Perhaps I was delirious; I did run a temperature of 101 degrees for a week. After that, though, I appeared to be back to normal.

I was across the street at the Murrays' house in this same week, before or after the shoes incident, and I wouldn't play with the two little brothers, Stephen and Jeff. This was strange, as I was never lethargic; in fact, I was the kind of kid on whom you might have seen a harness. Mama hated napping with me because I wouldn't hold still.

Mrs. Murray called Mama on the phone: "Frances, Francine won't get up off the floor." Someone carried me home; Daddy always got home mid-afternoon, and Mama was a small woman with lower back problems who was unlikely to have picked me up at age three. It couldn't have been my teenage brother, Gene, because he was in a sanitarium with tuberculosis. Perhaps Mrs. Murray carried me.

* * *

I have a favorite photo of myself just prior to this: Six neighbor kids lined up against a wall in what looks to be a driveway, looking like The Little Rascals, the mischievous children of the popular 1940s short films, which I later watched almost daily when we got a television. One of the Murray boys — the older one, Stephen — is in the photo, blond and a foot taller than me. I'm guessing I had a crush on both him and his brother ... I loved my daddy, and I loved boys, too.

In the photo, I'm in the middle of the group, and I've got jingle bells on my high-top toddlers' shoes (Mama tied them on so she would know where I was in the house, since I was inclined to get into stuff at every opportunity). My short dress adds to the "Little Rascals" image — I look a little like Darla from that series. I also look like I'm not sure there's enough room for me; someone, probably my dad, told us to stand close together so he could get us all in the Brownie viewfinder, and I'm looking up with my eyes and eyebrows, as if to say, "Am I doing this right?"

I knew the importance of being good and doing what adults said to do. I love how this picture shows the seriousness with which I took instructions, even at two and a half.

* * *

Because I wouldn't get up and play at the Murrays,' and because I cried in the night and said my shoes hurt, and I had been recently running a fever, I was taken to see Dr. Blackman, who delivered me in 1947 at Queen of the Angels Hospital in Los Angeles. I don't recall ever playing with the Murray kids again, though my mother did keep in touch with Mrs. Murray for many years.

In 1951, there'd been a polio threat for decades. Years later my mother told me, "They had the vaccine then, you had to ask for it from your doctor, but people were getting polio from the vaccine in those days, so many people, including us, did not get vaccinated."

This is not at all accurate, I learned when I was in my fifties, though I now understand why she might have gotten the time frame and facts mixed up. One batch of the vaccine made by Cutter Laboratories in April of 1955, four years after I came down with polio and a year after the first public trials, did cause some incidence of infection: 204 people contracted the disease, most of them experiencing paralysis, and 11 of them died. Normally, an incidence of one in 700,000 people would be expected from the inactivated virus vaccine, and those cases were sometimes found to be from exposure prior to vaccination. Theories proliferated as to the cause, but one thing was certain: some of the vials of vaccine at Cutter had contained live virus. This was probably because the virus was kept in storage too long, clumped, and the formaldehyde (which kills the live virus and keeps it inactive, allowing the recipient to create antibodies without getting the virus) could not penetrate these "clumps." Dr. Jonas Salk, the researcher who was the first to get the polio vaccine into trials and initiate the inoculation program that became instrumental in stopping the epidemic, later said that this period of infamy for the vaccine was the one time in his life when he felt suicidal.

After this debacle, the protocol for storage was vastly improved. More testing was required before the vaccine was released, and stricter tracking of the location of all vaccines was mandated by the government. (Though I do not love all aspects of government, here is one small but powerful instance of how useful record keeping can be when it is standardized across all states.)

By 1961, the rate of polio had dropped by 96 percent. The last known new case of it in the US occurred in 1999.

* * *

My mother had a way of distilling information into its most simplistic form and was a fearful person in general. As a child, though, I believed everything she told me. Now, having known her much better, I wonder if her line about fearing the vaccines was not an excuse — her feeling guilty that she and Daddy never asked our doctor about vaccinations, and then creating an explanation for her inquisitive daughter. Vaccines were not available when I contracted polio; they were not made public in the massive trial inoculation campaign until 1954. But it's most likely that she didn't remember the sequence of events, and when I asked about polio as a young child, she simply needed to tell me something about why I got it.

In all the time I lived with my mother, I recall her going to the doctor perhaps once. She either feared information or felt it was too expensive to go unless there was a dire circumstance — and the latter was certainly true. Economically, we lived a simple, slightly-below-middle-class life. I was taken to the doctor, later in my life, with strep throat and occasional other complaints, but never to the dentist; I was afraid of the potential pain and I think that my mother didn't want to deal with my protests, or the expense. When I was sixteen, my close friend's older male cousin commented discreetly to her that I would be pretty if I got those decayed front teeth fixed. After she told me this, I went to my mother and asked her to make an appointment with a dentist for me. I had one or two teeth removed and several filled, including the four front ones, with white enamel. I had been oblivious to this need.

Although I do not clearly remember my entire battery of polio symptoms at age three, what is typical with both paralytic and non-paralytic types is an onset involving nausea, headache, sore throat, back and neck stiffness, and pain. There are generally changes in reflexes and an elevated spinal fluid cell count. Poliomyelitis virus lives in the intestines and throat, but the usual gastrointestinal flu symptoms of bowel difficulties do not seem to be present. With paralytic polio, there is also weakness in one or more muscle groups. Spinal polio involves the trunk or extremities, more often the legs, and this is the type I had. The people who had bulbospinal polio are those who had acute respiratory difficulty and were put in iron lungs. (There were perhaps one or two dozen operative iron lungs still in the US in 2014, indicative of how few people were left sharing that equipment, surviving with this more life-threatening form of polio. Most polio patients with breathing difficulties, which can also begin to surface late in life, now use wheeled ventilators.)

There were so many backward attitudes about disease in the fifties. If someone had cancer, my mother spoke about it in hushed tones, almost as if it were the patient's fault. Polio had so many stigmas attached to it. Accounts I've read describe almost paranoiac thinking similar to that surrounding AIDS in the 1980s: You got it from the air, you got it from touching someone who didn't wash, you got it from associating with the wrong class of people, people who lived in filthy conditions and spat on the sidewalk. You got it from swimming pools. Throughout my life people have said to me, after asking me why I limped and hearing I'd had polio, "You got it from swimming pools. You must have gone in swimming pools." I never went in a swimming pool before I was at least nine. My mother didn't swim. Besides that, swimming pools are highly chlorinated, generally, and it's unlikely the virus could live in those conditions. An unchlorinated pool or pond, if there had been any in an area subject to the epidemic, would have been unwise recreation but still would probably not have incubated the virus due to dilution.

The myth about pools likely started because a public pool was a venue where many people congregated in close proximity, especially children, somewhat similar to when you catch a cold at a children's party or in a movie theater full of people. Polio is also a disease that typically catches on during warm weather. Many public pools also closed when there was a local epidemic, adding to the concept that they were a polio breeding site.

Polio is spread through direct contact with an infected person's secretions, most often their saliva or feces. And an infected person may have no symptoms.

* * *

My next memory of this early time is vivid: I was in a very small room in a hospital (probably Queen of the Angels), hardly bigger than a large closet, and it was all white and that sickening color of pastel green tile — or perhaps it just became unpalatable to me. My parents later unwittingly chose it for our new kitchen, so I had to live with it for years. A friend in college later described it as "landlord green," and we speculated that it was for some reason a cheap and easily obtained color.

In the tiny, quarantined hospital room, having so recently gaily celebrated my third birthday, I was alone, day after day. I cried a lot. I was scared and had no understanding of why I'd been taken there, away from my mama and daddy, other than that I hadn't felt well. I'd been sick before, but had always been allowed to remain at home. I was wildly afraid, filled with despair and a sense of stark abandonment.

(Continues…)


Excerpted from "Not a Poster Child"
by .
Copyright © 2018 Francine Falk-Allen.
Excerpted by permission of She Writes Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Table of Contents

Introduction 1

Chapter 1 When I Was a Normie 5

Chapter 2 Taken from Home 11

Chapter 3 Making the Best of Imprisonment 20

Chapter 4 Next Steps in Rehab 31

Chapter 5 Back to Childhood 43

Chapter 6 Not a Poster Child 55

Chapter 7 Ambulating 61

Chapter 8 The Crippled Kid Meets Sticks and Stones 67

Chapter 9 Daddy 79

Chapter 10 My Country, Tis of Thee 87

Chapter 11 Carol (Francine) the Christian Girl 95

Chapter 12 Just Another Schoolgirl (Who Discovers Water) 102

Chapter 13 The (Even More) Awkward Years 113

Chapter 14 How I Spent My Summer 126

Chapter 15 High Hopes for High School 137

Chapter 16 Into Boys and Rock 'n' Roll 149

Chapter 17 Life as a Co-Ed 155

Chapter 18 Drugs Lite 166

Chapter 19 Love the Leg You're With 171

Chapter 20 In and Out of Marriage and Back to School 177

Chapter 21 Wake Up, Little Sufi 186

Chapter 22 Not Exactly Bliss 196

Chapter 23 Singing as Prayer 205

Chapter 24 On the Ropes 214

Chapter 25 The Hazards of Walking 222

Chapter 26 Making Way for Mr. Right, and a New Challenge 229

Chapter 27 What People Think 238

Chapter 28 Personal Best 246

Chapter 29 A Crip by Any Other Name 255

Chapter 30 Polio, the Gift that Keeps on Giving 258

Chapter 31 Moving On 267

Chapter 32 Taking Care of Business 271

Chapter 33 And Now, Something Completely Different… 276

Chapter 34 Doctors, Doctors 283

Chapter 35 Deal with It 287

Chapter 36 Keep on Truckin' 298

Chapter 37 Ageism and Reverse Ageism 303

Chapter 38 Occasional Poster Child 310

Chapter 39 Aging Well 318

Chapter 40 Chop Wood, Carry Water, Stir the Oatmeal 323

Chapter 41 As Good as It Gets 332

Afterword Parting Shots: About Vaccines 341

Resources 350

Bibliography 357

Customer Reviews