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Scott M. Stoffel - Deaf-blind Reality: Living the Life

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Book:
Deaf-blind Reality: Living the Life
Author:
Scott M Stoffel
Publisher:
Gallaudet University Press
Genre:
Books / Science
Year:
2012
City:
Washington, D.C.
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5 / 5
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Most stories about disabled people are written for the sake of being inspirational. These stories tend to focus on some achievement, such as 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 arent 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.

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DEAF-BLIND REALITY

Living the Life

Scott M. Stoffel, Editor

Gallaudet University Press
Washington, DC

Gallaudet University Press

Washington, DC 20002

http://gupress.gallaudet.edu

2012 by Gallaudet University

Printed in the United States of America

Library of Congress Cataloging-in-Publication Data

Deaf-blind reality: living the life / S.M. Stoffel, editor.

p. cm.

ISBN 978-1-56368-535-4 (pbk.: alk. paper) ISBN 978-1-56368-536-1 (e-book)

1. Deaf blind people. I. Stoffel, S. M.

HV1597.D45 2012

362.41dc23

2012022984

The paper used in this publication meets the minimum requirements of American National Standard for Information SciencesPermanence of Paper for Printed Library Materials, ANSI Z39.48-1984.

Contents

Contributors

Many thanks to the following individuals who shared their personal experiences in this book:

Angela C. Orlando Kent, Ohio	Mark Gasaway Atlanta, Georgia
Carol OConnor Manchester, England	Melanie Bond Bay City, Michigan
Christian S. Shinaberger Santa Monica, California	Patricia Clark Wellington, New Zealand
Christy L. Reid Poplar Bluff, Missouri	Scott Stoffel Lansdale, Pennsylvania
Ilana Hermes Cape Town, South Africa	Tonilyn Todd Wisner Opelousas, Louisiana
Judy Kahl Bonita Springs, Florida	Wendy Williams St. Paul, Minnesota

Glossary and Abbreviations

Following are terms and abbreviations that occur frequently in the book.

Glossary

Closed-circuit tevelvision (CCTV): A TV used as a reading aid by the visually impaired. The camera faces a platform on which printed material can be placed, and the magnified image is displayed on a screen.

Deaf-blind (also deaf blind or DB): A condition in which a person suffers from both a significant hearing loss and visual impairment. A deaf-blind individual is not necessarily totally deaf and/or totally blind.

Encephalitis: A condition characterized by inflammation of the brain that is usually caused by a viral infection. Deaf-blindness and other disabilities can result from subsequent damage to the brain and nervous system.

FM system: An audio device that can link a hearing aid, cochlear implant, or earphone to a microphone.

Hemolytic disease of the newborn (erythroblastosis fetalis): A condition that occurs when there is an incompatibility between the blood types of the mother and the infant.

Hydrocephalus: A condition characterized by an increase in cerebrospinal fluid around the brain that results in enlargement of the head in infants because the bones of the skull are not yet fused together. The fluid is blocked by a congenital condition or a disease and can be drained into the abdominal cavity by implanting a mechanical device called a shunt.

Keratoconjunctivitis: An inflammation of the cornea and conjunctiva.

Keratoglobus: A degenerative, noninflammatory disorder of the eye in which structural changes within the cornea cause it to become extremely thin and change to a more globular shape. It causes corneal thinning, primarily at the margins, which results in a spherical, slightly enlarged eye.

Light perception: An optical condition in which a person can only detect the presence or absence of bright light. No shapes or details are perceptible.

Macular degeneration: An optical condition in which the central vision gradually deteriorates. It can result in a blind spot in the middle of the visual field that becomes wider as the condition progresses.

Menieres disease: A disorder of the inner ear that can affect hearing and balance and is characterized by episodes of dizziness and tinnitus and progressive hearing loss, usually in one ear.

Neuropathy: A disease or disorder, especially of a degenerative nature, which affects the nervous system. It can affect vision, hearing, and/or other body functions.

Night blindness: An optical condition in which a persons eyes cannot adjust to dim settings, such as outdoors at night. The person becomes effectively blind when illumination is weak, even if he or she can see well in normal room lighting. This condition is a symptom of RP and Ushers syndrome.

Nystagmus: Involuntary motion of the eyes. The condition causes a persons eyes to jump around or quiver, distorting proper focus of vision.

Orientation and mobility training (O&M): An area of rehabilitation training for blind and deaf-blind people that deals with moving about the community, both on foot and via public transportation. It may include use of a white cane or guide dog.

Oscillopsia: A visual disturbance in which objects in the visual field appear to oscillate. The severity of the effect may range from a mild blurring to rapid jumping.

Perthes disease: A degenerative disease of the hip joint, where a loss of bone mass leads to some degree of collapse of the hip joint (i.e., to deformity of the ball of the femur and the surface of the hip socket).

Polyneuropathy: A neurological disorder that occurs when many peripheral nerves throughout the body malfunction simultaneously. It may be acute and appear without warning or chronic and develop gradually over a longer period of time. Many polyneuropathies have both motor and sensory impairment, while some also involve the autonomic nervous system. These disorders are often symmetric and frequently affect the feet and hands, causing weakness, loss of sensation, pins-and-needles sensations, or burning pain.

Retinitis pigmentosa (RP): A vision disorder characterized by progressively shrinking peripheral vision. RP can also weaken the acuity of central vision and cause night blindness and oversensitivity to bright light. The rate at which the condition degenerates differs greatly among individuals with the condition. Some suffers lose all vision over a short span, while others never become totally blind.

Rubella: A highly contagious viral disease, especially affecting children, which causes swelling of the lymph glands and a reddish rash on the skin. It can be harmful to the unborn baby of a pregnant woman who contracts it.

Tinnitus: Noise, usually ringing or buzzing sounds, which is not real but heard by a person when cells within the ear die. The noise may be vague or quite loud and distracting.

Tracking: Tracking is a technique employed by deaf people with low vision, especially tunnel vision, to keep track of a signers hand by lightly holding the persons wrist.

TTY: An electronic device that has a keyboard and a small display screen that deaf and hard of hearing people use to communicate by telephone with hearing persons through a relay operator. The relay operator is unnecessary if both the caller and the recipient of the call use TTY machines. The concept is similar to Instant Messaging (IM). TTY use is steadily being replaced by video phones and Internet-based relay services.

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