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Deaf-Blind Reality

Living the Life

Scott M. Stoffel

Publication Year: 2012

Most stories about disabled people are written for the sake of being inspirational. These stories tend to focus on some achievement, such as a sports or academics, but rarely do they give a true and complete view of the challenges individuals must deal with on a daily basis. For example: How does a deaf-blind person interact with hearing-sighted people at a family reunion? How does she shop for groceries? What goes through his mind when he enters a classroom full of non-handicapped peers? These aren’t questions you are likely to find answers to while reading that incredible tale of success. They are, however, issues that a deaf-blind person wishes others understood. Deaf–Blind Reality: Living the Life explores what life is really like for persons with a combination of vision and hearing loss, and in a few cases, other disabilities as well. Editor Scott M. Stoffel presents extensive interviews with 12 deaf-blind individuals, including himself, who live around the world, from Missouri to New Zealand, Louisiana to South Africa, and Ohio to England. These contributors each describe their families’ reactions and the support they received; their experiences in school and entering adulthood; and how they coped with degeneration, ineffective treatments, and rehabilitation. Each discusses their personal education related to careers, relationships, and communication, including those with cochlear implants. Deaf–Blind Reality offers genuine understanding of the unspectacular, but altogether daunting challenges of daily life for deaf-blind people.

Published by: Gallaudet University Press

Title Page, Copyright Page

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Contributors

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pp. vii-viii

Glossary and Abbreviations

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pp. ix-xii

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Introduction

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pp. 1-20

As its title suggests, this book deals with the reality of being deaf-blind. The goal of this book is not to tell amazing or inspiring stories about people who are disabled; it is to show what life is really like for persons with a combination of vision and hearing loss (and, in a few cases, additional disabilities as well...

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1. Family Reaction and Support

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pp. 21-37

How a family responds to a child’s disabilities has a monumental impact on the child’s life. Often, a youngster’s ability to accept or at least cope with disabilities is a direct reflection of the family’s response to the abnormal circumstances...

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2. Education Part I: Primary andSecondary School Experiences

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pp. 38-64

School is far more difficult for children with sensory disabilities, both academically and socially. There are many ways in which parents, teachers, and special services can help these children get the most out of primary and secondary school. When I asked the contributors to discuss their school experiences, several important issues surfaced...

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3. Transition to Adulthood

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pp. 65-77

Making the transition from childhood to adulthood can be a challenge for anyone. For a person with multiple disabilities, the challenge is even greater. The key difference between these two phases in our lives is the level of responsibility and independence expected of us. Whether “the next step” is going to college, getting a job, or becoming a homemaker, most people find themselves needing...

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4. Degeneration

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pp. 78-102

Only a small percentage of deaf-blind people are born with absolutely no vision and hearing. Many suffer from degenerative disorders, such as Usher’s syndrome, that cause progressive loss of one or both senses. The effects of aging can also exacerbate sensory disabilities. Such progressive losses can happen quickly or be very gradual...

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5. Bad Medicine

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pp. 103-119

To err is human, and doctors are as human as the rest of us. However, when a medical professional makes a mistake or fails to take a case seriously, the results can be disastrous. Patients with multiple problems that can’t readily be diagnosed can understandably be frustrating for doctors...

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6. Rehabilitation

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pp. 120-136

Rehabilitation services can help people with disabilities learn to cope with their challenges on a number of basic levels, including getting around (“orientation and mobility,” or O&M), performing household chores, cooking, shopping, communication, attending school or college, and workplace adaptation...

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7. Education Part II: Adult Education

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pp. 137-160

In chapter 2, the panelists discussed their primary and secondary schooling experiences. Adult education, which includes college, technical or business schools, and work training programs, differs significantly from early education, so it is covered here as a separate topic...

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8. Careers

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pp. 161-187

One of the greatest challenges for people who are deaf-blind is identifying feasible careers and then finding and maintaining actual jobs in those areas. Sensory disabilities throw multiple monkey wrenches into this equation. While VR services and good accommodations can help pave the way for a productive...

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9. Daily Life

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pp. 188-207

While homemaking and running errands involve things most people take for granted, such routine activities can be a lot more complicated for people who are deaf-blind. A hearing-sighted person can pick up the phone and call a plumber when the kitchen sink leaks or hop in the car when it’s time for an appointment...

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10. Adult Relationships

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pp. 208-225

Given that we humans are social creatures by nature, one of the most important aspects of our lives is building relationships with other people. Deaf-blindness interferes with normal social interactions in a number of ways, such as inhibiting communication and making common social activities difficult or impossible...

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11. Communication

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pp. 226-237

Communication is a critically important issue. While the group of deaf-blind individuals discusses their communication methods throughout this book, some readers may want to focus specifically on understanding how people who are deaf...

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12. Cochlear Implants

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pp. 238-253

The advent of the cochlear implant (CI) has had a major impact on the deaf-blind world. While the technology is far from perfect and is less effective with certain types of hearing loss, such as auditory neuropathy, the CI has helped many deaf-blind people improve their ability to communicate and glean information...

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13. Coping

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pp. 254-265

The previous chapters of this book have dealt with coping primarily in a physical sense. Here, the contributors talk about how deafblindness affects them psychologically and how they cope with this. Being able to manage physically does not guarantee...

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Afterthoughts

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pp. 166 -289

The following are poems written by the contributors of this book. There are no particular themes for this section, though much insight can be gleaned from a person’s creative works...


E-ISBN-13: 9781563685361
E-ISBN-10: 1563685361
Print-ISBN-13: 9781563685354
Print-ISBN-10: 1563685353

Page Count: 304
Illustrations:
Publication Year: 2012