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Text copyright © Hannalora Leavitt 2021 Illustrations copyright © Belle Wuthrich 2021
Published in Canada and the United States in 2021 by Orca Book Publishers. orcabook.com
All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system now known or to be invented, without permission in writing from the publisher.
Library and Archives Canada Cataloguing in Publication Title: The disability experience : working toward belonging / Hannalora Leavitt ; illustrations by Belle Wuthrich.Names: Leavitt, Hannalora, author. | Wuthrich, Belle, 1989- illustrator.Series: Orca issues.Description: Series statement: Orca issues | Includes bibliographical references and index.Identifiers: Canadiana (print) 20200335162 | Canadiana (ebook) 2020033610X |isbn 9781459819283 (softcover) | isbn 9781459819290 (pdf) | isbn 9781459819306 (epub)Subjects: lcsh: People with disabilities—Juvenile literature. | lcsh: Disabilities—Juvenile literature.Classification: lcc hv1568 .l43 2021 | ddc j362.4—dc23
Library of Congress Control Number: 2020944960
Summary: This nonfiction book for teens provides a history of disability, describes types of disabilities and examines the challenges faced by people living with disabilities.
Orca Book Publishers is committed to reducing the consumption of nonrenewable resources in the making of our books. We make every effort to use materials that support a sustainable future.
Orca Book Publishers gratefully acknowledges the support for its publishing programs provided by the following agencies: the Government of Canada, the Canada Council for the Arts and the Province of British Columbia through the BC Arts Council and the Book Publishing Tax Credit.
The author and publisher have made every effort to ensure that the information in this book was correct at the time of publication. The author and publisher do not assume any liability for any loss, damage, or disruption caused by errors or omissions. Every effort has been made to trace copyright holders and to obtain their permission for the use of copyrighted material. The publisher apologizes for any errors or omissions and would be grateful if notified of any corrections that should be incorporated in future reprints or editions of this book.
Edited by Sarah N. Harvey Design by Belle Wuthrich Cover and interior illustrations by Belle Wuthrich
Printed and bound in South Korea.
24 23 22 21 • 1 2 3 4
To Elver Greening, a pioneering mother who refused to institutionalize her bright, beautiful daughter, Karen, who was born with cerebral palsy.
Let’s Talk Disabilities
A Brief History of Disability
The Culture of Disability
The Culture of Independence
Engineering a Brighter Future with Technology
Advocacy and the Politics of Disability
A Final Word from the Author
Table of Contents
A young girl recently approached me at the grocery store and asked, “May I pet your guide dog?”
I thanked her for asking so politely, grateful her parents hadn’t shushed her. “I’m sorry,” I said. “You shouldn’t pet a guide dog while it’s wearing its harness. The harness means he’s a working dog.”
“Where does he work?” she asked.
Questions offer such great teaching moments. I’m always eager to share the real story about guide dogs because there are so many myths about them (see chapter 5 for more about guide dogs). No, my dog doesn’t know how to interpret crosswalk signals. He can’t read maps. He often correctly anticipates where I’m going, but this doesn’t mean he can read my mind. At least, I don’t think it does.
Given my eagerness to share, who better to write a book on the topic of disability but a writer with a visual impairment, a veteran of a disability lifestyle for nearly five decades now? I’ve been fortunate to have lived, learned and loved surrounded by people with all kinds of disabilities. Both my grandmother and mother contracted the polio virus, the former as a young adult and the latter as an infant. My grandmother used a wheelchair to get around, but my mother was able to walk, though with a pronounced limp. When I was a child, it never dawned on me that they were disabled. They were just my mother and grandmother. No big deal.
So we’re on the same page here, let’s look at the definition of disability.
According to the dictionary, a disability is
a physical or mental condition that limits a person’s movements, senses or activities;
a disadvantage or deficiency, especially a physical or mental impairment that interferes with or prevents normal achievement in a particular area;
something that hinders or incapacitates.
Definitions aside, no dictionary can possibly define what living with a disability looks and feels like. In this book we’ll explore the three major types of disability—sensory, physical and intellectual. I’ll be using the acronym pwd(s), which stands for person(s) with a disability or disabilities.
As you may have already noticed from the above definitions, the language associated with disability is primarily negative. For one single word, there are a lot of negative terms in the definition—impairment, prevents, limits, disadvantage, deficiency and incapacitates cast a subtle pall on the word disability. My goal with this book is to propose other ways of perceiving disability, ways that include and don’t exclude pwds. So how many disabled people are we talking about?
According to a 2017 update of the Canadian Survey on Disabilities (csd) produced by Employment and Social Development Canada, I am one of 3.8 million (or one in four) Canadians (age 15 and over) living with a disability.
The United States Census Bureau reported that 8.7 percent of Americans under 65 (approximately 29 million people) were living with a disability between 2013 and 2017. Surveys measure serious difficulties with hearing, vision, cognition (thinking), walking or climbing stairs, as well as difficulty with self-care and independent living.
As he became more and more dependent on his family and care aides, he experienced an unexpected feeling—vulnerability.
With over 33 million pwds in North America, why do so many of us feel excluded, isolated, forgotten? This phenomenon of being marginalized is referred to as otherness, or being othered. I am an other.
Sociologist and author Richard Jenkins states: “Ideas of similarity and difference are central to the way in which we achieve a sense of identity and social belonging. Identities have some element of exclusivity. Just as when we formally join a club or an organization, social membership depends upon fulfilling a set of criteria. It just so happens that such criteria are socially constructed (that is, created by societies and social groups). As such ‘we’ cannot belong to any group unless ‘they’ (other people) do not belong to ‘our’ group. Sociologists set out to study how societies manage collective ideas about who gets to belong to ‘our group’ and which types of people are seen as different—the outsiders of society.”
Disability otherness happens whether you were born with a disability (congenital disability) or acquired it through disease or trauma. My disability is an acquired disability. My experience with otherness was gradual. It started when I was in second grade, a sick kid who was often absent from school. I spent more time in the hospital than at home and slowly began to lose touch with day-to-day family and school life.
I had surgery to remove a rare, cancerous brain tumor that was slowly crushing both of my optic nerves. Despite life-saving surgery, the damage to my optic nerves was permanent. I was totally blind in my right eye and legally blind in my left, a pronouncement that set me firmly on the path of otherness, a path very different than that of my siblings and schoolmates.
In his book The Body Silent: The Different World of the Disabled, Dr. Robert F. Murphy, a Columbia University anthropologist, chronicled his own descent into disability when he was diagnosed with an inoperable (terminal) spinal-cord tumor. “I don’t remember ever before thinking about physical disability, except as something that happened to other, less-fortunate people. It certainly had no relevance to me. A disabled person could enter my field of vision, but my mind would fail to register him—a kind of selective blindness quite common among people of our culture,” Murphy writes.
As he became more and more dependent on his family and care aides, he experienced an unexpected feeling—vulnerability.
With no previous awareness of disabilities, Murphy struggled to understand what being disabled would mean for him. He soon discovered he was a citizen in the world of otherness. He learned what it’s like to experience barriers to being able to move freely about in his world. As he became more and more dependent on his family and care aides, he experienced an unexpected feeling—vulnerability.
I hope that reading this book will give you what Dr. Murphy didn’t have before his diagnosis: the beginnings of a fundamental understanding of the types of challenges pwds can expect to encounter as they become expert at mastering life with a disability.
Most pwds have the same aspirations for their lives as you do for yours. The difference is that pwds face far more barriers to accessing equal opportunities in education, employment, housing, transportation and health care in order to achieve their goals. In addition to these barriers, the disability experience comes with centuries-old myths and stereotypes attached.
Stereotypes are oversimplified ideas about groups of people that are based on such things as race, ethnicity, age, gender, sexual orientation—almost any characteristic.
In this book we’ll look to history to seek an understanding of the origins of disability and why stereotypes continue to persist today. Do blind people really hear better? Can guide dogs interpret traffic signals? Can a woman in a wheelchair have a baby? Why do so many people speak louder when addressing blind people? You’ll hear stories from people with various kinds of disabilities about the myriad challenges, adaptations and solutions required to live a full, meaningful life with a disability.
Like you, we struggle to discover who we are and where we might fit in and, yes, to determine our sexual identities too.
Disabled people are in cultures throughout the world. You’ll find us represented in the community and the workplace and, unfortunately, more than well represented in the poverty statistics in both Canada and the United States. Like you, we struggle to discover who we are and where we might fit in and, yes, to determine our sexual identities too. And we do this in addition to managing the social and physical barriers we face each day.
I hope the information and stories featured in this book will inspire you to look at people with disabilities in a whole new, positive way. Don’t place us on a pedestal, looking up at us in awe and amazement. Don’t look down on us either. Rather, let’s meet in the middle ground, face-to-face and ready to answer some of those shushed questions. Thank you for taking the journey into our world of otherness.
What is a disability? Well, it depends on who you ask. Most of us consider a person in a wheelchair or a blind person using a guide dog to be disabled. Disabilities we are able to see easily around us in the community are called visible disabilities.
But there are some we do not see, including deafness, learning disabilities and intellectual impairments. They are called invisible disabilities, and they are often misunderstood and/or overlooked because of their hidden nature. Whether a disability is visible or invisible, its meaning shifts depending on how you look at it.
Why is it so important to define what a disability is? It’s because governments offer support and financial services to those deemed dis-abled. It’s important that applicants for assistance meet the definition of disability in order to receive fair and consistent levels of financial aid and services.
If they’re unable to work, people with disabilities are often eligible to receive monthly financial benefits (or a pension) from provincial, federal or state governments. Receiving a disabled designation often provides individuals with specialty ground-transportation services, parking privileges and accommodations from airlines for wheelchairs and service dogs.
who concerns itself with global health issues. It takes a broad view when defining disability and its inherent health-care implications because it must consider political and cultural differences.
“An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.”
Health-care professionals are concerned with the diagnosis and treatment of an individual’s health concerns. This approach is called the medical model. The goal of the medical model is to restore a person to their former “normal” status, to “fix” them. The medical profession does not tend to distinguish between disability and disease or illness.
“Any restriction or lack of ability to perform an activity in a manner or within the range considered normal for a human being. The term disability reflects the consequences of impairment in terms of functional performance and activity by the person.”
This definition does not consider the social implications of living with a disability. Defining disability as primarily a medical condition fails to recognize the day-to-day challenges faced by pwds living in the community.
The social model of disability says that disability is caused by the way society is organized, not by an individual’s medical diagnosis.
The social model rejects the idea that the “problem” is a medical one. Instead it puts forward the view that it is the way society is run and organized that is the problem, not the individual disabled person. The social model promotes the idea that disabled individuals should have choice and control in their own lives.
The social model promotes the idea that disabled individuals should have choice and control in their own lives.
Here’s an example to help you understand the difference between the medical and social approaches to disability.
A medical report about a patient with a physical disability will often read as follows: This 22-year-old paraplegic man sustained injuries in a motor-vehicle accident…
A social history prepared by a social worker on the same individual may read: I met with this 22-year-old man, who sustained paraplegia in a motor-vehicle accident…
Both reports are accurate, but one specialty sees the disability first, and the other recognizes the individual first. The social model of disability, often called “person first,” has been adopted by the legal communities in both Canada and the United States.
So who gets to have a disability? The truth is that disability does not discriminate. We are all vulnerable.
Now that youhave a better understanding of the different approaches to defining disability, let’s look at the many kinds of disability.
Congenital disabilities, also referred to as birth defects, may be present at birth but are not always immediately recognized by medical professionals. They are caused by chromosomal defects, gene abnormalities and genetic factors interacting with the environment. A small percentage of disabilities is caused by maternal use of alcohol and drugs, maternal infections and other illnesses.
Examples of congenital disorders include albinism, cleft lip/palate, Down syndrome, cystic fibrosis and spina bifida.
Acquired disabilities are ones whose onset occurs after birth. Accident-related disabilities such as head injuries and spinal-cord injuries are two examples of acquired disabilities. Another cause of this kind of disability is disease, such as meningitis, rubella and moderate to severe arthritis.
Pwdsare as distinct from one another as are able-bodied people, but we are often lumped together under the general term disabled. For instance, I am often asked if I would prefer to take the elevator instead of the stairs. My disability is vision loss. It’s an impairment of the sense of sight. It does not affect the functioning of my limbs. My ability to move easily about, to navigate curbs and stairs and escalators, is not affected by my vision loss. However, if I cannot see them, I could easily trip and/or fall. Not seeing them is different from not being able to navigate them.
The confusion about my ability to navigate stairs is the equivalent of asking a person in a wheelchair if they would like a braille restaurant menu. This is one example of why it’s so important that we understand the distinction between sensory, physical and intellect-ual disabilities.
When you understand that a visually impaired person has a sensory disability, of course you will appreciate their need to ask for assistance from time to time because they are unable to read signage and other information. A deaf and/or deafblind individual will more than likely struggle with communicating their needs to a hearing and seeing world. A person with a physical disability will appreciate the lowered panel in an elevator but will not need to use the braille markings on it. And someone with an intellectual disability who has full vision may be able to see and read the schedule posted at a bus stop but may require more time and patience to process the meaning of the information.
Asensory disability is a severe impairment or loss of the sense of sight and/or hearing. Some pwds have lost a significant amount of vision. Others have lost most of their ability to hear. And a minority of others have experienced a combination of both vision and hearing loss.
Significant impairment of one’s vision is commonly referred to as visual impairment or legal blindness.
Legal blindness is a level of blindness that has been defined by law to limit some activities (such as driving) for safety reasons or to determine eligibility for disability-related government programs and benefits.
I first noticed something amiss with my vision when I was 11 and struggling to read the blackboard. I could see that something was written on the board because of the contrast between the lightness of the chalk and the darkness of the board, but it was a blur. It was the same with the print in my textbooks. I could see the print because the letters were dark against a white background. But they were as blurry as the words on the blackboard.
I couldn’t recognize my friends or teachers because their faces were blurs too. Teachers were taller than students—that was the only way I could tell them apart.
The Snellen eye examination chart was created by Herman Snellen in 1862 to measure visual acuity and is still in use today.
I thought maybe I just needed a pair of glasses, but I was wrong. A visit to the local eye specialist changed my status from sighted student to being registered as legally blind.
Optometrists assess vision in two ways: visual acuity and visual field.
Visual acuity refers to distance and clarity of vision. It is typically represented as a fraction. If you have perfect vision, you have a visual acuity of 20/20. Acuity is tested with the use of a Snellen chart, the poster you’ll find in almost every medical office. The chart assesses visual acuity by determining the level of visual detail that a person sees.
The threshold for legal blindness in North America is a visual acuity of 20/200 or less in the better eye (with the best possible correction). Having 20/200 vision means that a person has to be 20 feet away from something to be able to see it, whereas a person with full vision can see the same object from as far away as 200 feet. If you are unable to read the top letter on the Snellen chart at 20 feet, you are considered legally blind.
Visual field refers to the range of your vision in all directions. It is often referred to as side vision or peripheral vision. Visual fields are measured in degrees. With both eyes open, a person with normal vision can see almost 180 degrees horizontally and about 150 degrees vertically. A visual field that is constricted to the central 20 degrees or less (commonly referred to as “tunnel vision”) also falls into the designation of legal blindness.
Canada’s population of legally blind individuals numbers approximately 500,000, according to the Canadian National Institute for the Blind (cnib
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