Possibilities: Recreational Experiences of Individuals who are Deafblind

Table of Contents

Credits, Introduction, and Preface
Rachel Weeks- Triathlon
Maricar Marquez- Running
Kristine D’Arbelles- SSP—Swimming Triathlon
Heidi Zimmer- Mountain Climbing
Cody Colchado- Power Lifting
Corrina Veesart- Ballet, Cheerleading, Rock Climbing, and Yoga
Emily Desfor- SSP—Outdoor Adventures
Kevin Frost- Speed Skating
Ryan Ollis- Running
Faye Frez-Albrecht- Soccer
Quinn Burch- Dance, Horseback Riding, and Running
Nicholas Abrahamson- Hiking the Appalachian Trail
Bruce Visser- Traveling
Jason Corning- Running
Sarah K. McMillen- Ice Hockey and Taekwondo
Angela Theriault- Running
Scott Keeler Bass- Biking
Maria Marquez Dykman- Wind Chimes
Conclusion & References

Editors

Lauren J. Lieberman, Ph.D.
The College at Brockport

Justin A. Haegele, Ph.D.
Old Dominion University

Maricar Marquez, MS
Helen Keller National Center

APH Project Staff

Rachel White, Research Assistant and Lead Editor
Li Zhou, Core Curriculum Project Leader
Tristan Pierce, Physical Education Project Leader
Denise Snow Wilson, Research Assistant
Anthony D. Jones, Art Design/Production Manager
Note: Throughout this collection, the abbreviation SSP is used to represent support service providers. SSPs are specially trained professionals who enable people who have combined vision and hearing losses to access their environments and make informed decisions by providing them with visual and environmental information, sighted guide services, and communication accessibility (American Association of the Deaf-Blind, 2012).

Introduction

by Lauren J. Lieberman

The purpose of this collection is to highlight the recreational and leisure pursuits of individuals who are deafblind so the reader will see the Possibilities associated with recreation for such individuals. Each of these essays is meant to inspire the readers to share their recreational experiences with others. Whether it is through verse, prose, music, or visual art, the reader will be able to pass down the inspiration to another generation.

Why is it Important?

An event in Belgium brought to light how important it is for individuals with deafblindness to learn about the successes of others who are like them. In 2012 a pair of 45-year-old twins, Marc and Eddy Verbessem, petitioned the Belgian government for the right to end their lives. Marc and Eddy were born deaf and had lived and worked together their whole lives. When they discovered that they had an incurable condition that would take away their vision and thus their ability to see one another, they began to consider euthanasia, a form of government sanctioned suicide reserved for those who are suffering. As their older brother Dick Verbessem explained, the twins did not want to face institutionalization because of their blindness. They viewed blindness as an unbearable condition in which they would lose not only their ability to see, but all of their independence.

Why did the Verbessem twins think that institutional living was their only option? A diagnosis of deafblindness can often lead to feelings of despair and helplessness in the individual. However, it is important for everyone to know that with patience, modifications, and accommodations, individuals who are deafblind can lead active, exciting, and productive lives. Many technological innovations can help in this process. In addition to braille, innovations such as screen readers and refreshable braille displays allow individuals with deafblindness to enjoy the written word. Sign language interpreters can listen to spoken language and turn it into hand signs. Interveners can use tactile signing (making hand signs into another individual’s hand) to interpret for the individual with deafblindness. Through these services, as well as education, and other accommodations, persons with deafblindness can enjoy literature, performing arts, recreational activities, and the adventures of daily living.

What is Recreation?

People often use the terms recreation and leisure interchangeably. Both relate to the use of free, unconstrained time that is not otherwise used for work, school, or other required daily living activities. Leisure time is any free, uncommitted time that is used for a chosen activity; recreation is a preferred pleasurable activity enjoyed during leisure time. Recreational activities can be sedentary (less physical) in nature, such as knitting, playing chess, playing musical instruments, or social networking on the computer, or they can be activities that enhance physical fitness, such as walking, skiing, bowling, hiking, rock climbing, boating, bicycling, and many others.

Individuals with deafblindness can participate and enjoy all of these activities, but unlike non-visually impaired persons, they do not learn recreational activities by observation. Recreation must be taught intentionally with specific instructional techniques and safety in mind. This is why professionals in the field of blindness have chosen to include ‘recreation and leisure skills’ as one of nine components of Expanded Core Curriculum (ECC). The ECC is an educational framework that emphasizes critical development areas for students with visual impairments (Hatlen, 1996; Sapp & Hatlen, 2010). It was developed to help students with visual impairments gain the skills necessary to be independent, productive and educated members of society. By learning about services, modifications, and accommodations in regard to recreational activities, parents, caregivers, and students with deafblindness will be able to overcome physical barriers and succeed in recreational pursuits. An added benefit of the ‘recreation and leisure skills’ component is that it can also help with other components of the ECC such as ‘social-interaction skills,’ ‘orientation and mobility,’ ‘independent living,’ and ‘self-determination.’

Benefits of Recreation

Quality of life refers to the general well-being of individuals and societies, and one’s personal satisfaction (or dissatisfaction) with the cultural or intellectual conditions under which one lives; essentially, it refers to a person’s overall health and happiness. Recreation can increase quality of life or life satisfaction in individuals with deafblindness as it allows for social interaction and provides health benefits that help buffer the adverse effects of stressful, busy lives (Iso-Ahola, Seppo, & Park, 1996; Tsai, 2005). Recreation is especially important for people who are deafblind, as they often go through long periods of unemployment. Regular activity keeps these individuals active and engaged in the community.

Research has shown that recreation is an important factor in quality of life for everyone, including older adults and people with disabilities (Barnett & Weber, 2008; Johnson, 2009; Lieberman & MacVicar, 2003; Tsai, 2005). Recreation provides social interaction as well as physical and emotional health benefits. Individuals who engage in recreational activities can benefit by having improved cardiovascular function, better ability to sleep, improved self-esteem, increased stamina, and decreased stress levels. Each of these benefits may not only improve quality of life but can also have a positive effect on the individual’s other daily activities (Zabriskie, Lundberg, & Groff, 2005).

The writers in this collection have bravely engaged in recreational activities and succeeded to their great benefit. We are pleased to offer these enriching and inspirational stories on recreation from individuals who are deafblind.

Preface

by Maricar Marquez

I never thought of myself as an active person until later in life. My optometrist unhappily told me, through a tactile sign language interpreter, that my vision loss had progressed rapidly due to the fact that I had Usher syndrome. As a sighted person, I found the news devastating. The more my vision loss progressed, however, the more I became aware of the challenges other individuals who are deafblind face. Due to a lack of support, communication, and understanding, isolation is often a major aspect of life for such individuals. Individuals who are deafblind can have a strong tendency to feel left out because they may not know what is going on around them; often, sighted people may not know what to do with them which serves to isolate them further.

Following my diagnosis, I slowly became immersed in the deafblind community. I have worked at the Helen Keller National Center for Deaf-Blind Youths and Adults for many years, providing individualized rehabilitation training to individuals who are deafblind. In turn, they have taught me how to better understand the challenges of their life experiences. In most states, individuals who are deafblind are geographically dispersed and may find it difficult to meet others who are like them. When it is a beautiful day, people who are deafblind may not be able to go outside or act spontaneously because they may not have any communication modalities other than language. Caregivers and facilitators must learn to adapt their communication methods in order to meet the needs of the individual. I have discovered over the years, however, that one way to significantly improve the lives of those who are deafblind is through recreation.

Recreation is an essential part of life for everyone, including those who are deafblind. With the right accommodations, recreation can be a valuable part of life for a deafblind person. Modifications are necessary of course, and activity facilitators should be aware of the communication and activity modifications that are needed in order for such individuals to remain active. For example, individuals who are deafblind may not be aware of what is happening in their surroundings, or be able to navigate in an unfamiliar setting. They may not have equal access to the same communication mediums as sighted individuals. A facilitator who is well trained and aware of these barriers will be able to provide these accommodations and empower the individual to live a more active and independent life.

It is through my gradual immersion in deafblind culture and my involvement in several related conferences that I met Dr. Lauren Lieberman. She was full of energy. She brought tandem bikes to the conferences so that attendees who are deafblind could experience the freedom of pedaling in the fresh air. We both agreed that those who work with individuals who are deafblind should act as advocates for them and foster their independence; in life, as with tandem biking, we do not pedal alone but with others, relying on each other’s confidence and skill. In this collection, we would like to share with you the experiences of several individuals with deafblindness who have overcome many obstacles and made great achievements in recreation, in sports, and in life.