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- Herausgeber: John Wiley & Sons
- Kategorie: Fachliteratur
- Sprache: Englisch
This one-of-a-kind manual provides direction for leading groups of people with disabilities or groups that have members with disabilities. Viewing disability as a single aspect of a multifaceted person, Drs. Bauman and Shaw share their insight and expertise and emphasize practical skill building and training for facilitating task, psychoeducational, counseling, family, and psychotherapy groups across various settings. Topics examined in Part I include common themes in groups that focus on disability; various group formats, including groups using technological platforms; issues of diversity that exist simultaneously with ability; group composition; ethical concerns; and training considerations and logistical accommodations. Part II focuses on group counseling with clients experiencing sensory, psychiatric, cognitive, and physical disabilities as well as chronic medical conditions. A list of resources, support information, and group exercises completes the book. *Requests for digital versions from ACA can be found on www.wiley.com. *To purchase print copies, please visit the ACA website *Reproduction requests for material from books published by ACA should be directed to [email protected]
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Veröffentlichungsjahr: 2016
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CONTENTS
Cover
Title Page
Copyright
Dedication
Acknowledgments
About the Authors
Part I: General Principles
Chapter 1: Introduction
Chapter 2: Common Themes
Chapter 3: Types of Groups
Chapter 4: Diversity Issues
Chapter 5: Group Composition
Chapter 6: Ethical Considerations
Chapter 7: Training Considerations
Part II: Specific Disabilities
Chapter 8: Sensory Disabilities
Chapter 9: Psychiatric Disabilities
Chapter 10: Cognitive Disabilities
Chapter 11: Physical Disabilities
Chapter 12: Chronic Health Conditions
Part III: Resources
Chapter 13: Recap and Conclusions
Chapter 14: Exercises and Resources
References
Index
Technical Support
End User License Agreement
Guide
Cover
Table of Contents
Begin Reading
Part 1
Chapter 1
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Group Work with Persons with Disabilities
Sheri Bauman
Linda R. Shaw
American Counseling Association
6101 Stevenson Avenue • Suite 600 • Alexandria, VA 22304 • www.counseling.org
Copyright © 2016 by the American Counseling Association. All rights reserved. Printed in the United States of America. Except as permitted under the United States Copyright Act of 1976, no part of this publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system, without the written permission of the publisher.
American Counseling Association
6101 Stevenson Avenue • Suite 600 • Alexandria, VA 22304
Associate Publisher • Carolyn C. Baker
Digital and Print Development Editor • Nancy Driver
Senior Production Manager • Bonny E. Gaston
Copy Editor • Celia K. Nelson
Cover and text design by Bonny E. Gaston
Library of Congress Cataloging-in-Publication Data
Names: Bauman, Sheri, author. | Shaw, Linda R., author.
Title: Group work with persons with disabilities/Sheri Bauman and Linda R. Shaw.
Description: Alexandria, VA : American Counseling Association, [2016] | Includes bibliographical references and index.
Identifiers: LCCN 2015049586 | ISBN 9781556203404 (pbk. : alk. paper)
Subjects: LCSH: People with disabilities—Counseling of. | People with disabilities—Mental health services. | Group counseling.
Classification: LCC HV1568 .B38 2016 | DDC 362.4/0454—dc23 LC record available at http://lccn.loc.gov/2015049586
Dedication
This book is dedicated to our teachers and colleagues—the many caring and compassionate souls who inspired us, taught us, and modeled exemplary counseling skills and values, and to our clients and students, who together have made us the counselors and educators that we are today.
Acknowledgments
The authors gratefully acknowledge the following people, all of whom contributed their ideas and experiences for this book:
Amanda Easton
Lia D. Falco
Gabrielle Ficchi
Michael T. Hartley
T. Gregory Kopp
Teresa Mayle
Jayci Robb
Toni Saia
Kristi Thomas
Allison Thorbergson
About the Authors
Sheri Bauman, PhD, is a professor and director of the counseling graduate program in the Department of Disability and Psychoeducational Studies in the College of Education at the University of Arizona. Prior to earning her doctorate in 1999, she worked in public schools for 30 years, 18 of those as a school counselor. She is a licensed psychologist (currently inactive). Dr. Bauman conducts research on bullying, cyberbullying, peer victimization, and teacher responses to bullying. She also studies group work and is past editor of the Journal for Specialists in Group Work. She is a frequent presenter on these topics at local, state, national, and international conferences. She is the author of Special Topics for Helping Professionals and Cyberbullying: What Counselors Need to Know and is lead editor of Principles of Cyberbullying Research: Definition, Measures, and Methods. Her most recent book is Mental Health in the Digital Age, coauthored with Dr. Ian Rivers. Her vita includes more than 50 publications in peer-reviewed scholarly journals, numerous book chapters, three training DVDs, and other publications for a general audience. She has been the recipient of two grants from the National Science Foundation and is now the principal investigator on the research team funded by a grant from the National Institute of Justice to investigate how school resource officers (SROs) affect school climate and safety and to test the added value of an enhanced model for training SROs. Dr. Bauman lives in Tucson, Arizona, with her husband and three golden retrievers.
Linda R. Shaw, PhD, is a professor and department head in the Department of Disability and Psychoeducational Studies at the University of Arizona. Prior to her current position, Dr. Shaw was the director of the Rehabilitation Counseling Program at the University of Florida. She has more than 35 years of experience as a rehabilitation counselor, administrator, and educator. Her counseling and nonacademic administrative experience includes specializations in spinal cord injury rehabilitation, brain injury rehabilitation, and psychiatric disability. Dr. Shaw is a licensed mental health counselor and a certified rehabilitation counselor. Dr. Shaw currently chairs the Code of Ethics Revision Committee for the Commission on Rehabilitation Counselor Certification (CRCC) and was a member of the American Counseling Association (ACA) Ethics Revision Task Force, which completed the 2014 revision of the counseling Code of Ethics. She is a past president of the Council on Rehabilitation Education (CORE), the national accreditation body for rehabilitation counseling programs, and a past president of the American Rehabilitation Counseling Association (ARCA). She represented CORE on the 20/20 Visioning Group cosponsored by the American Association of State Counseling Boards and ACA. Dr. Shaw has served as vice chair of CRCC and has also served as chair of the CRCC Ethics Committee, presiding over that committee throughout the process of a previous revision of the Code of Professional Ethics for Rehabilitation Counselors. Dr. Shaw has published and presented widely on issues related to disability-related job discrimination, the correlates of professional ethical behavior, professional issues in rehabilitation counseling, and neurological disability. She is the author of two coedited books and many publications and presentations. Currently, her research is focused on disability harassment in employment and on professional ethics.
Part IGeneral Principles
Chapter 1Introduction
The need for this book became apparent when we were searching for a suitable supplemental text in group counseling for graduate students in a counseling program with a rehabilitation emphasis. A thorough search revealed that no such book existed, despite the fact that approximately 19% of the U.S. population reported a disability on the 2010 census, with more than 50% describing the disability as severe (U.S. Census Bureau Reports, 2012). The Occupational Outlook Handbook (2014) indicates that in 2014, 120,100 rehabilitation counselors, who specialize in working with people with disabilities, were employed in the United States, with a projected growth of 9% by 2024. In addition, many counselors who are not trained as rehabilitation counselors serve clients with disabilities. Persons with disabilities may participate in groups to assist them in adapting to an acquired disability, but they also may seek groups to help with the many issues for which able-bodied persons participate in groups. Groups are helpful to survivors of abuse and trauma, family problems, social concerns, career decisions, and myriad other topics. Whether the facilitator is a specialist in working with people with disabilities or a generalist counselor with standard training, conducting effective groups that include members with disabilities requires additional knowledge, attitudes, and skills over and above what is typically covered in the basic group counseling course. This book is designed to provide those needed components.
Definitions and Frameworks
We use the term disability to refer to a physical or mental condition that results in significant limitations in one or more major life activity. Limitations could be difficulties in mobility, communication, sensory processing, cognitive processing, and many others. This definition is consistent with the concept of disability used in the Americans With Disabilities Act of 1990 (ADA), a critically important disability civil rights law passed in 1990. However, it is important to emphasize that this definition is not intended to convey the notion that a disability is a deficit.
We subscribe to the disability model that frames disability as an interaction between the physical or mental condition of the individual with a disability and the attitudes, policies, and contexts that create limitations. In other words, disability is a socially constructed concept. The disability rights movement in the United Kingdom uses the term disabled “to denote someone who is disabled by society's inability to accommodate all of its inhabitants” (Disabled-World.com, 2016, ¶13). There are many types of disabilities, including mobility or physical impairments, spinal cord injuries (SCIs), vision or hearing disabilities, psychological disorders, and cognitive or learning disabilities. Some disabilities are readily apparent to others, whereas others are invisible (such as epilepsy or diabetes). We include this definition because members of groups may bring up the social discrimination they experience, and because their own view of the limitations associated with their particular disability (or disabilities) may become issues to be addressed in treatment.
We also choose to use “person-first language” (Dunn & Andrews, 2015, p. 256) in the title and throughout the book not only to be consistent with the American Psychological Association publication style guidelines but also because we want to convey that the disability is one aspect of a multifaceted person. A useful guideline for using person-first language can be found at http://www.cdc.gov/ncbddd/disabilityandhealth/pdf/disabilityposter_photos.pdf.
However, we recognize that there is an opposing viewpoint that prefers “identity-first” language. From this perspective, for some people, the disability is the focus of their identity. For example, Emily Ladau (2015) believes that person-first language separates the person from his or her disability and “implies that ‘disability’ or ‘disabled’ are negative, derogatory words. . . . [Person-first language] essentially buys into the stigma it claims to be fighting” (¶ 7). She points out that when referring to the racial or ethnic identity of someone, we do not say, “a person who is Latina” or “a person who is Jewish,” we say, “She's Latina” or “He's Jewish.” She feels that saying “She's disabled” is equivalent. However, though we acknowledge this position, we use “person with a disability” rather than “disabled person” in this book, recognizing that this is not a universally accepted choice.
We use the term group or group work to include all types of groups: task, psychoeducational, counseling, and therapy. The needs and concerns of persons with disabilities exist in all of those formats and in all settings (schools, community mental health facilities, hospitals, rehabilitation centers) in which groups may be offered, and we provide material that will generally be applicable to all contexts and formats. Although the distinctions between types of groups and settings are important, we believe that the concerns related to disabilities transcend those distinctions. In those cases in which the material is specific to a type of group or setting, we make that clear.
Client Rights
The passage of the ADA in 1990 was an important step toward ensuring the rights of people with disabilities (see http://www.ada.gov and http://aaidd.org/home for additional information). B. Brown (1995), in the spirit of that legislation, proposed a “Bill of Rights” (p. 71), which provides a foundation for this book. We include below those rights that are most pertinent and urge readers to view the original article for the complete list:
The right not to be discriminated against on the basis of a disability when being referred to or requesting participation in group work.
The right not to be discriminated against on the basis of being regarded as a person with a disability.
The right of individuals to be judged for inclusion in group work on their own merits.
The right to request and to be provided with reasonable accommodation that is not an undue hardship.
The right not to be disqualified from group membership on the basis of the inability to perform nonessential role functions.
The right not to be discriminated against as a direct threat to the safety or health of others, unless certain standards are met.
B. Brown (1995) also highlighted rights that focus on the prospective group member:
You have the right and responsibility to initiate discussion with the facilitator about any accommodation needs.
You have the right to reveal a disabling condition to the group leader and to members without being discriminated against.
You have the right to expect the development of group norms that recognize the value of diversity within the group. (pp. 72–75)
With these rights in mind, we draw on a model proposed by Merchant (2013) for multicultural groups to provide a framework for this endeavor. She proposed that groups might be culture specific, which in the case of disabilities would mean that membership in the group would be restricted to persons with a specific disability (e.g., deafness, AIDS, cerebral palsy, SCIs), with the goals of providing support, information, and resources for persons with that disability and of helping members accept themselves and their lives with the disability. A second type of group would be one designed to increase understanding of, and sensitivity toward, persons with disabilities in a group comprising a mixture of persons with and without disabilities (or with different disabilities). We do not focus on such groups in most of this book, although we touch on them in the training and resources sections. Finally, there are groups for a variety of issues (e.g., family violence, substance abuse, grief and loss) in which persons with disabilities participate although the focus is on the issue rather than the disability. In each of these types of groups, the facilitator must be knowledgeable about the particular challenges of including persons with disabilities as contributing members of the group. These challenges may be related directly to the disability, but they also may include other health issues, relationship difficulties, family-of-origin issues, abuse, and so on. Facilitators must also have a basic understanding of the disabilities to anticipate and prepare for the needs of those members while helping all members have a positive experience in the group and a deeper appreciation of the psychosocial context of the member (or members) with disabilities. Finally, it may be that the group facilitator is a person with a disability; the nature of the disability and the composition of the group may present unique leadership issues whether or not the members have disabilities as well (Bauman & Thorbergson, 2011).
Importance of Groups for Persons With Disabilities
On a very basic level, groups provide a social support network for members. For those with disabilities, this may provide a necessary ingredient for growth. The skills that form relationships in the group can be applied to social settings outside the group with the confidence that one has been successful using those skills in the protected context of the group. Groups provide a safe and supportive environment in which members can gain deeper self-understanding and develop a more nuanced understanding and appreciation of others. The well-known therapeutic factors in groups (Yalom & Leszcz, 2005) can be particularly powerful in the case of groups with persons with disabilities (Ellis, Simpson, Rose, & Plotner, 2015).
One of those factors is universality, which refers to the recognition in the group that one is not alone in her or his situation. For persons with disabilities, being in a group with others who have the same challenges can reduce the sense of isolation that often accompanies such circumstances. This phenomenon is powerful in groups for parents who have children with disabilities (Seligman, 1993). Parents may struggle to adjust their parenting to meet the needs of the child with a disability and may experience negative reactions from others in the community; sharing and learning from others who share these challenges can be very therapeutic. In groups with others who do not have disabilities, the person with disabilities may find he or she shares feelings and struggles with others regardless of their disability status, which is also a vehicle to reduce the feelings of loneliness and disconnection from others. In such groups, the person with disabilities may find that experience facilitates the transition into other settings (e.g., work, social activities) with nondisabled persons. Groups provide an opportunity to exchange ideas about common problems (Livneh, Wilson, & Pullo, 2004), often generating new perspectives on perceived challenges.
In a group, the opportunity to be helpful to others, or altruism, can increase the members' feelings of self-worth. When others in the group acknowledge or appreciate a member's contribution to the group or to individual members, he or she feels valued and important, essential ingredients for self-esteem. When members encounter others at different stages of dealing with an issue, they may develop a sense of hope that they, too, can make progress and feel more satisfied and fulfilled. For those whose disability may limit their opportunities to join with others, the feeling of cohesiveness that develops in groups can provide that sense of belonging that is so essential for optimal human functioning.
Groups also provide a place where members can express their emotions without fear of judgment, a process known as catharsis. This experience often precipitates feelings of relief from the effort to bottle up strong emotions, and it allows members to shed feelings of shame and guilt that are frequently associated with those emotions. Groups also provide a context in which one can learn from others, by giving and receiving feedback, modeling the behavior of other members, and exploring existential issues of freedom and responsibility, mortality, and loneliness. Although these factors are present to some degree in all effective groups, the potential for profiting from these therapeutic factors may be enhanced among those with disabilities, particularly those disabilities that may be associated with social isolation or that are particularly heavily stigmatized.
In groups led by a professional, the leader has the opportunity to observe and assess the client's interpersonal style. In individual therapy, the counselor must rely on the client's self-report; in the group, the clinician can observe and assess the psychosocial needs of the client directly, which provides much more authentic data.
Organization of This Book
The book is organized into sections to facilitate the location of pertinent information. All chapters include a section on Key Terms and Recommendations for Practice. References are in a separate section at the end of the book.
Part I
Part I includes chapters whose information is most general. For example, in Chapter 2, we discuss themes that are likely to be prominent for groups with a focus on disability concerns. For some people whose disability had a recent onset, it is likely that issues of adjustment and adaptation to the disability will arise. There may be a need for information sharing regarding managing the disability, as well as social concerns about relationships (including intimacy, friendships, family, and professional).
The variety of group formats, including those using technological platforms, is discussed in Chapter 3. In many ways, groups using technology can be particularly helpful for persons with mobility or transportation difficulties, those with rare conditions, and those with concerns about being judged by their appearance. In Chapter 4, we examine issues of diversity that interact with disabilities to present complex issues. Demographic factors such as race, ethnicity, age, sexual orientation, and cultural context combine to create unique profiles even among those who share the same disability. Moreover, we consider the case of persons with multiple disabilities or a history of polytrauma and discuss how those factors affect the process and content of groups. In Chapter 5, we examine more closely decisions that must be made regarding the composition of groups. For example, we consider whether a group should be homogeneous or heterogeneous and on what basis and characteristics that choice should be made.
Chapters 6 and 7 address significant topics that bear close attention. Chapter 6 focuses on ethical considerations. The importance of concentrated focus on ethical concerns cannot be overstated. As professionals, we adhere to the ethical standards of our professional organizations and must be sensitive to specific situations that can engender ethical dilemmas. Chapter 6 focuses on ethical considerations specific to facilitating groups with members who have disabilities, rather than ethics in general. Chapter 7 reviews special training needs and brings attention to logistical and other accommodations that may be necessary to include clients with disabilities. In this chapter, we illuminate psychosocial concerns that may not be at the forefront for clinicians not specifically trained in rehabilitation, and we discuss points of general etiquette that must be observed to treat all clients with dignity.
Part II
Part II focuses on group work with specific populations. Each chapter is designed to stand alone, so that a counselor doing a group session with persons with that type of disability can use it as a guide. In some cases, we suggest accommodations that might be necessary to enable full participation by a person with a disability. For example, a person who is blind may need braille room or floor numbers; a person who uses a wheelchair needs an accessible location with ramps and doors that are wide enough to allow wheelchair passage. However, we wish to stress that group counselors should see these adaptations not as burdens but as opportunities to embrace universal design principles. Universal design is a movement that promotes the design of physical spaces and products to make them usable by everyone(http://www.washington.edu/doit/universal-design-vs-accommodation). This includes having wheelchair-accessible buildings and restrooms but also providing written materials such as intake forms in large print.
Chapters in this part cover sensory disabilities, behavioral and emotional disabilities, cognitive disabilities, physical disabilities, chronic illness and disabilities including AIDS/HIV. Each chapter provides focused and in-depth discussion of needed information for counselors working with individuals with these disabilities in their groups.
Part III
Part III summarizes and integrates the information presented in previous chapters and includes additional resources that will be useful to readers of the book. Readers will find lists of books and other media and information about organizations that provide information and services to persons with disabilities. There is a glossary to assist readers in developing an understanding of the terminology used and training activities for those who are counselor educators.
We hope that counselors at all levels of training will find this book useful. We believe strongly in the power of group work, but because of the potential power (that, when mishandled, can be harmful), it is critical that groups be facilitated by a well-trained and prepared counselor or therapist. That is particularly true for those who serve clients with disabilities. Conducting groups with persons with disabilities (many of whom have multiple disabilities or additional issues) takes knowledge and skill but also an accepting, inclusive attitude.
We believe most counselors are likely to encounter clients with disabilities in their career—recall that persons with disabilities are the largest minority group in the country. We hope this book will inspire confidence so that if a counselor learns that a client interested in a group has a disability, he or she knows that he or she can return to this book for information.
Key Terms
Disability:
a condition that limits a person's ability to engage in one or more major life activity (school, work, travel and movement, recreation). Disability is a social construction, because the attitudes, policies, and lack of accommodations in the environment create the limitations rather than the disability creating them per se.
First-person language and disability-first language:
When referring to someone who has a disability, there are two competing beliefs about the most respectful and appropriate way to do so. One camp uses a phrase that first notes the person and then the disability (person-first language, e.g., person with a hearing loss), and the other prefers to acknowledge the centrality of the disability by saying “deaf person” or “hearing-impaired person.”
Group dynamics:
patterns of interaction among and between members and between members and the leader.
Group work:
a generic term that includes all types of groups, primarily task groups, psychoeducational groups, counseling groups, and therapeutic groups. Classroom groups and athletic teams are sometimes studied as examples of task groups, as are committees in the workplace. The dynamics of interactions are similar in all groups.
Therapeutic factors:
Also known as
curative factors
, this concept originated with the work of Irvin Yalom and refers to characteristics of groups that promote beneficial outcomes in members.
Recommendations for Practice
Locate a copy of a well-validated measure of attitudes toward persons with disabilities. Take the inventory honestly, and evaluate your own performance. If it is not what you would like, consider how to get additional experience to become more accepting of this population. One such measure is available online at
https://implicit.harvard.edu/implicit/
. Log in as a guest and take the disability measure.
You may wish to ask clients whether they prefer person-first or identity-first language as part of establishing norms at the beginning of the group.
A discussion of what the term
disability
means to you (and members) can be very enlightening.
Be sure to explain why groups are the treatment of choice for this population.
Be conscious of the meeting space and ensure that it can accommodate persons with a variety of disabilities.
Observe or survey your groups to determine which therapeutic factors are most prevalent. Reflect on how you can maximize these experiences to enhance the growth of group members.
Chapter 2Common Themes
Sheri Bauman and Amanda Easton1
In this chapter we focus on themes that are common in groups specifically for persons with disabilities. Understanding why these issues are important, and being informed about these topics, will help the counselor facilitate more productive interactions and growth among members.
Although we mentioned the social or minority model of disability in the Introduction, it is relevant to this chapter as well and bears some amplification. We also review disability identity and culture because of its general significance and as a backdrop for the more specific topical issues. Because many groups for persons with disabilities have a goal of assisting clients to adjust to life with the disability, we provide an overview of a model of adaptation to disability so that the counselor can conceptualize the members' progress within a well-known framework. Then we turn to specific topics of social relationships and dating, sexuality, overprotection, abuse, substance abuse, maintaining health, and accessibility issues.
Models of Disability
Historically, disability has been viewed through several lenses, and there are lingering remnants of those views today (Olkin, 1999). The moral view of disability suggests that disability is either a punishment for or evidence of moral failure or sin. When this view prevails, those with disabilities are shunned and shamed. The flip side of the moral view, however, paints disability as a marker of a model family: “God only gives children with disabilities to those who are up to the challenge.” In addition, some cultures have viewed disability as evidence of extraordinary powers (e.g., ability to foresee the future).
A later theoretical development was the medical model (Olkin, 1999), which focused on the defective bodily or mental systems. This perspective focused on the individual, who was seen as abnormal or pathological. The goal of treatment was to repair the defective systems to the extent possible while also learning to adapt to the condition and to the inhospitable environment.
A contemporary perspective is the minority or social model, which situates the problem in the environment, emphasizing that problems occur when the environment does not accommodate persons with disabilities and holds negative attitudes toward those persons (Olkin, 1999). These environmental obstacles and the attitudinal barriers presented by some nondisabled persons are the focus of this perspective. Only since the passage of the Rehabilitation Act of 1973, and the later development and implementation of the associated regulations, has the minority model become a prominent perspective. The persistence of negative stereotypes of persons with intellectual disabilities (IDs) is such that they have been excluded from full participation in many important activities (e.g., meaningful work, independent living; Special Olympics, 2003). As a result, the Special Olympics organization emphasizes the importance of advocacy and self-advocacy for this population.
The World Health Organization's (2011) global report on disability pointed out that the medical model and the social model are not mutually exclusive. In fact, this organization espouses a biopsychosocial model—which considers the interaction of the health condition, categorized as impairments (physical conditions), activity limitations (difficulty or inability to conduct basic activities such as walking or eating), and participation restrictions (problems with access or discrimination), and contextual factors in the environment (in both the person and the environment)—as the most useful model.
Cultural Views
These perspectives on disability are expressed in different cultures to a greater or lesser degree. We discuss the cultural implications in Chapter 4. There are cultures in which the moral or medical models are the dominant view, and for Americans whose parents or native community still subscribe to ancestral cultural beliefs, their growth and development can be marked by incidents in which those attitudes are influential. For example, Grace Tsao (2000) described her childhood experiences as a female Asian American with a disability. She recalls a time when she protested that she was not allowed to attend certain significant events in the cultural community; the reason she was given by her parents was that if she were to attend, the elders would look down upon the family because her disability would be evidence of their misdeeds.
Although the role of environmental factors in disability is now widely known and generally accepted, negative attitudes and misinformation about disabilities persist in many settings. That means that clients who come to a group probably have experienced overt discrimination and microaggressions that lead to frustration in many areas of life. For example, TS, a woman with cerebral palsy, reveals that strangers have voiced surprise to see her in a bar where many young adults congregate, have asked personal questions about her sexual functioning that they would never ask an able-bodied person, and have assumed that her boyfriend must also have a disability (surely an able-bodied man would not find her attractive), along with numerous other insults.
Although we have a law that requires businesses to be accessible to persons with disabilities (the ADA), many businesses meet the letter of the law by providing some sort of access, but those entrances may be “around the back,” so that those accommodations separate and demean persons with disabilities. For example, there is a local pizza and beer establishment that has bar-height tables and stools for seating. Although the eatery does have a separate, albeit inconvenient, entrance that accommodates a wheelchair, the table they have available to a person using a wheelchair is at standard table height, meaning that the person in the wheelchair would be below the other members of her party.
The skilled and sensitive facilitator must recognize that these experiences are hurtful and common, and group members may need to talk about them in a safe and supportive climate in which they believe they will be understood, regardless of the focus or theme of the group. Because these themes are the canvas on which other issues are projected, it is important to allow these issues to be explored and not to treat them as distractions or story-telling behaviors that need to be cut off.
TS attended a group at her university with other students with cerebral palsy, facilitated by a counselor who had both cerebral palsy and an SCI. This counselor brought the additional perspective of someone who had to adjust to a disability at a later point in life. Although all members had cerebral palsy, they differed on many other factors: how they were treated by their families and culture, how salient the disability was to their identity, and in the types and severity of their symptoms. For TS, her disability does not define her, but it does affect her life. She found this group to be valuable because she was accepted easily and found people who could relate to her experience as a new college student with a disability.
Counselors should encourage self-advocacy and should be well-informed about mechanisms that clients can use on their own behalf. For example, ADA complaints can be filed online at http://www.ada.gov/filing_complaint.htm.
A Model of Adaptation
As with other processes that are associated with common experiences (e.g., grief and loss, response to natural disaster), there is a model of adaptation to disability that helps the clinician conceptualize the experience of clients in a group. We emphasize that models never apply universally, and individuals are often not linear in their progression. Stages occur in a different order than the theory describes, or recur, or individuals get stuck at a given stage. However, understanding the tasks involved will enhance the group facilitator's ability to manage the varied responses that are likely to emerge in the group setting. That is, the responses to the same circumstance are likely to vary among group members because they are different people in different stages of adaptation, and the facilitator should be prepared to point that out. It might even be appropriate to do a mini psychoeducational piece about the stages to illuminate the dynamic in the group.
Although more than one model has been proposed, we summarize the one developed by Hanoch Livneh (1986). This model applies to disabilities that are acquired rather than congenital, although even those who were born with a disability may experience some of the same reactions as they develop and mature and realize how their disability affects them.
The first stage, initial impact, occurs when someone has a sudden physical trauma (e.g., amputation, SCI) or an unexpected diagnosis of a serious life-threatening disease (e.g., cancer, Huntington's chorea, amyotrophic lateral sclerosis). During this stage, many persons experience a state of shock, during which their responses are numb and detached. Their thinking may be disoriented by the situation, and their energies may turn inward rather than toward others. As the shock dissipates (at different rates for different clients), people are likely to experience intense anxiety and demonstrate thinking disturbances, and they may display many symptoms of intense anxiety or panic.
The next stage is defense mobilization, in which people utilize psychological defense mechanisms to protect themselves from becoming overwhelmed. This stage is reminiscent of the model applied to grief and loss. The person often will engage in bargaining, mentally trying to negotiate with God or an ancestor to repair the lost function or to take away terminal disease. They may promise to change in some way in exchange for removing the present disability. They may also deny the situation entirely by convincing themselves that the situation is not as it seems, that they can recover or restore full functioning. People in this stage may seek multiple medical opinions, believing that the right doctor will reverse the situation. They may also increase their religious involvement, hoping to convince God of their sincerity and worthiness for a reprieve.
In the stage of initial realization, the individual is beginning to come to terms with the reality of the disability. Mourninganddepression is the stage during which people accept the circumstance and experience grief over the losses (of limbs, functions, activities, etc.) and during which the psychic pain is intense. Grief (emotional), mourning (behavioral rituals), and depression eventually subside. However, when depression lingers for much longer, and when it becomes a barrier to progress, it may require clinical attention. The withdrawal and lack of energy that accompanies a prolonged depression may make it difficult for someone to commit to being in a group, but if they can be persuaded to attend, finding that others have had similar struggles can be very therapeutic.
For example, WA, a counselor who works with clients with visual disabilities, describes a client who came into her agency after just having lost a significant degree of vision and learning that the condition that caused the vision loss would ultimately lead to blindness. She refused any rehabilitation services that would develop skills she would need to function with her condition. This client was scared of blind people, and reluctantly agreed to attend the group, although she insisted that her husband remain in the building because she expected to leave before the group was over. She took a seat in the farthest corner available to distance herself from the others in the group. WA said that her level of fear was extreme, but by the end of the first 2-hour session, she was beginning to engage with others because she understood that they could relate to her experiences and feelings. At the end of the 7-week group, she asked, “Now, what can I do next?” Her husband thanked the facilitator for “giving me my wife back.” WA commented that the group was an important place for the client to get her mind to a point at which she was ready to learn rehabilitation skills. She believed that her connection with the group was instrumental in that process.
Along with mourning and depression, clients may experience internalized anger, blaming themselves for their current situation and often experiencing guilt as a result. This is a personal version of the moral approach to disability. These feelings can inhibit progress toward integration if not contained.
Retaliation may follow, which is a period during which anger and hostility are turned outward rather than the inward focus of previous stages. Clients may appear bitter or resentful of able-bodied others and be prone to outbursts of intense anger. They may project their previously internalized blame and guilt onto others, or displace their anger at the universe onto others in their environment. Understanding this stage is essential for group facilitators, because the anger may emerge in group or even be directed toward the group or the facilitator. The reader might wish to consult the following article on working with difficult group members for additional tips: http://ct.counseling.org/2014/02/the-toughest-kinds-of-groups/. Understanding allows the facilitator to avoid taking the anger personally and to help the group also comprehend the dynamics at play, to reflect on their own processes, and to help the individual move beyond this stage to the final one, which is described next.
The final stage is one of reintegration, which has the goal of adjustment to the disability. At this point the person has acknowledged to him- or herself the nature of the disability and the implications it has for his or her life. The person at this stage is developing a revised self-concept, evaluating resources both internal and external. This does not imply that all the challenges have been mastered, but rather that the person is approaching the disability with a rational understanding and a desire to integrate the changed reality into future plans.
The facilitator of groups with the goal of adjustment or adaptation to the disability may find this model helpful in understanding the different stages exhibited by clients. If the group is not homogeneous in the stages, those who are closer to the reintegration stage can be models for those who are in earlier stages and can inspire hope in members who cannot yet imagine learning to live with this disability. One client said to her therapist at the end of the life of a group, “When I came here I thought it was the end, but it was really the beginning.” She learned from others in the group that her life was changed by her suddenly acquired disability, but it was not over, and she eventually embraced the idea of finding a new life that included her disability.
Now we turn to more specific themes that are likely to emerge in groups as members work toward the goal of reintegration. Not every theme will come up in every group, but we have selected those that will surely come up in some groups, and the facilitator can be prepared to handle them when they do arise.
Frequent Topics in Groups That Include Persons With Disabilities
Social Relationships and Dating
In this and the following sections, examples generally reflect heterosexuality; that is not meant to suggest that homosexuality is ignored or disrespected. Social relationships and dating, and sexuality, are important areas of functioning for persons with disabilities, regardless of sexual orientation. In fact, these topics are too infrequently discussed in general, and attention to sexual minority issues and disabilities is almost absent from the literature (Harley, Nowak, Gassaway, & Savage, 2002). Harley and her colleagues (2002) noted that in the college environment, students receive accommodations for their disability but “are simultaneously marginalized based on their sexual orientation” (p. 525). We discuss the issues of multiple minority identities in Chapter 4, but we wish to be clear that the information below applies to persons with disabilities of all sexual orientations.
Research has consistently found that more men with disabilities than women with disabilities marry. TS believes that may be because women are socialized to nurture and help others and would then be less concerned with the need to help their partner than might a man. The particular difficulties experienced by women with disabilities have been ascribed to several factors: the importance in the society of physical perfection in women, and the perceived role of women as caretakers. Regardless of career aspirations, women are still expected to be mothers and wives and caretakers of the family. There exists a biased notion that women with disabilities are unable to fulfill this role (Gill, Kerotoski, & Turk 1996) and are therefore less desirable romantic partners. That is, women with disabilities are erroneously thought to be dependent and requiring a caretaker, which contradicts the image of the mother as caretaker for others.
Women are expected to be beautiful (or to do everything possible to become so). Despite recognition that this is a seriously flawed ideal, the shift in attitudes and beliefs is slower to occur. Women, absorbing this unrealistic standard, strive to be thin and fit, use cosmetics to conceal flaws in their complexions, choose clothes and specially designed undergarments to flatter their shapes, and so on. That is, both women and men have difficulty looking beyond the physical or surface qualities of a potential partner; getting past the initial reaction to one's physical presentation takes effort that few people expend. Add to that a visible disability, and the challenge is clear. For example, TS shares that when she is sitting at a bar or table without her wheelchair close by, men will approach and flirt until she gets up, and then they either retreat or switch to a friendly rather than romantic style. She believes that men view women in a wheelchair as “dead from the waist down” and thus unattractive as a romantic partner.
Men also experience challenges in the dating world, because they are expected to exemplify strength and independence; thus, men with physical disabilities may be viewed as less than “real men.” This perception hinders their ability to profit from typical social opportunities to meet potential partners.
These stereotypes may explain why many persons with disabilities find online dating to be a more acceptable way to meet dating partners. Some individual profiles do not mention the disability, but this information is typically shared once an initial contact has been made to avoid surprises should they decide to meet in person. Others using the sites mention the disability in their profile so that they do not chance a rejection if a person finds out later; if they are put off by the disability, they simply will not initiate a contact. There are also dating sites specifically for persons with disabilities, although some singles do not want to restrict their search to only others with disabilities. Others find the prospect of dating someone with a disability to be more comfortable because there is no need to prove one's abilities. They can enjoy the other's company without feeling judged solely on the disability.
A personal story told online described a scenario in which an able-bodied man (the author of the piece) attended a dinner party. He arrived late, and others were already seated at the dinner table by then. He noticed a very attractive woman at the other end of the table, and they exchanged glances and behaved flirtatiously toward each other throughout dinner. When the meal was over, the writer was eager to approach the woman; when he did, he saw that she was in a wheelchair and had disproportionately short legs. His initial reaction was fear: He was not sure that he wanted to approach her after all. He did overcome his own reluctance, and the tale has a happy ending. The couple has now been married for 15 years.
Although this story is heartwarming, it is unfortunately not typical. It is realistic to suppose that many, if not most, men would have ended their approach when they saw that the woman had a disability. If the man were the one with the disability, the situation would probably be the same. In this manner, many people with disabilities have been shut out of the dating world or have experienced rejection so often that they choose to withdraw. Developmentally, for young adults, finding a romantic partner is a basic task, and feeling as though one is unable to participate is a very disturbing experience. This is common enough that it is likely to be a topic in many groups with persons with disabilities, especially in those groups that are targeted toward adolescents and young adults.
Among lesbian, gay, bisexual, and trangender (LGBT) young people, those with developmental disabilities may not be adept at interpreting social cues. Thus, if a gay or questioning person with a disability is treated kindly by a same-sex individual, he or she may interpret this as romantic interest and ask for a date (Harley et al., 2002). The person may respond angrily or rudely, resulting in an awkward and uncomfortable situation.
Sexuality
Sexuality, according to the World Health Organization's (2006) working description, is
a central aspect of being human throughout life [that] encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction . . . sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, legal, historical, religious and spiritual factors (p. 2).
Historically, sexuality is a topic that has been ignored, neglected, and given little merit in relation to disability. This is because people with disabilities have often been viewed as individuals who do not engage in sexual behaviors or romantic relationships or as people who cannot and should not be viewed as sexual beings. In addition, they often receive little, if any, sexual education (Aunos & Feldman, 2002; Tepper, 2000). Furthermore, the negative attitudes associated with sexuality and disability also stem from a legal perspective in which laws throughout the world, both presently and historically, have stifled personal choice for people with disabilities around childbearing, marriage, and engagement in sexual behaviors with persons with and without disabilities. However, recent efforts to include sexuality and disability in a multicultural framework have aided in building more positive attitudes toward sexuality and disability.
More important, the type of disability one experiences can often dictate how sexuality is expressed and experienced. For example, on one hand, there have been considerable efforts to protect people with IDs against sexual abuse but limited efforts to provide sexual education (Cuskelly & Bryde, 2004). On the other hand, people who have experienced traumatic brain injury (TBI) or SCI have been given much attention in the medical literature, exploring physical sexual functioning and sexual impulsivity (Sakellariou, 2006; Sandel, Williams, Dellapietra, & Derogatis, 1996). As described by a parent of a child with autism spectrum disorder (ASD), “If my child had a physical limitation or something other than autism, she would be at less risk, have access to more information, and I would feel more comfortable discussing sex with her” (Easton, 2013). This parent's view is not uncommon. In fact, there are more resources on sexuality available for disabilities such as SCI, physical disabilities, and other acquired disabilities (http://www.sexsci.me, http://www.disabilities-r-us.com), but few resources exist for congenital disabilities outside of medical references that focus primarily on sexual functioning.
The information one receives regarding sexuality is also important to consider. The first exposure to sexual information for most children and adults with disabilities comes from family members (parents, guardian, siblings), from support staff, or from sexual education that is provided in school. However, for many individuals who take part in special education programs, limited sexual education is provided, and parents and guardians often opt out of those programs. Though there have been efforts over the past 20 years to improve sexual education opportunities for people with disabilities, there are concerns that the emphasis is placed on information transmission rather than on building more positive attitudes toward sexuality and disability (Whitehouse & McCabe, 1997).
Given the limited dissemination of sexuality-specific information to people with disabilities, the lack of emphasis on building positive attitudes related to sexuality and disability, and the reality that people with disabilities experience sexuality in both similar and unique ways on the basis of the type of disability, means that a group context can better facilitate both the procurement of information and the development of more positive attitudes around sexuality and disability. When discussing sexuality in a group setting, a number of factors need to be considered because of the sensitivity of the topic. Sexuality is a broad term that is used to capture experiences, thoughts, fantasies, beliefs, attitudes, and values related to roles and relationships (World Health Organization, 2006). The facilitator needs to be alert to not only the attitudes and values of the group but also any potential signs of sexual abuse that may not be raised directly. This can be accomplished at the beginning of the group by surveying group members about what they hope to gain from the group, while establishing ground rules that support respect and privacy for all members.
In being aware of the values and beliefs of group members, it is common that individuals who partake in sexuality-based groups are there to learn about sexual safety, while attempting to ascertain their sexual orientation and sexual preferences. Awareness of the personal attitudes and values present in the group will enrich the conversation around topics that may provoke negative reactions from some members. In situations such as these, the facilitator must be sensitive and empathetic and help to uncover the origin of the negative reaction. Also, in efforts to promote knowledge acquisition and increase accepting attitudes, it is best practice that a group facilitator address the needs of the members of the group in terms of the language used within the group. For example, it is commonly appropriate for young children to refer to their genitalia as “wee wee” or “pee pee.” However, it is recommended that anatomical terms be used in place of slang terminology when discussing body features.
Topics covered in a sexuality group may include a focus on historical assessments of sexuality and disability, hygiene, contraception, reporting of sexual abuse, survivors of sexual abuse, sexual orientation,
