Mobility Impairment and the Construction of Identity 9781935049968

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ridolfo-fm_ff-fm 11/26/12 4:35 PM Page 1

MOBILITY IMPAIRMENT AND THE CONSTRUCTION OF IDENTITY

ridolfo-fm_ff-fm 11/30/12 4:18 PM Page 2

Disability in Society

Ronald J. Berger, series editor

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MOBILITY IMPAIRMENT AND THE CONSTRUCTION OF IDENTITY

Heather Ridolfo Brian W. Ward

ridolfo-fm_ff-fm 12/3/12 11:36 AM Page 4

Published in the United States of America in 2013 by FirstForumPress A division of Lynne Rienner Publishers, Inc. 1800 30th Street, Boulder, Colorado 80301 www.firstforumpress.com and in the United Kingdom by FirstForumPress A division of Lynne Rienner Publishers, Inc. 3 Henrietta Street, Covent Garden, London WC2E 8LU © 2013 by FirstForumPress. All rights reserved Library of Congress Cataloging-in-Publication Data Ridolfo, Heather. Mobility impairment and the construction of identity / Heather Ridolfo and Brian W. Ward. (Disability in society) Includes bibliographical references and index. ISBN 978-1-935049-57-9 (hc: alk. paper) 1. People with disabilities. 2. Group identity. 3. Identity (Psychology) 4. Sociology of disability. I. Ward, Brian W. II. Title. HV3011.R53 2013 305.9'083—dc23 2012041504 British Cataloguing in Publication Data A Cataloguing in Publication record for this book is available from the British Library. This book was produced from digital files prepared by the author using the FirstForumComposer. Printed and bound in the United States of America The paper used in this publication meets the requirements of the American National Standard for Permanence of Paper for Printed Library Materials Z39.48-1992. 5 4 3 2 1

To Margaret and Richard Ridolfo, and Mary and Gary Ward Thanks for all your support over the years

v

Contents

List of Tables and Figures Acknowledgments

ix xi

1

Embracing Disability?

1

2

Building on Models of Disability

11

3

Everyday Experiences of the Body and the Environment

41

4

The Dynamics of Disability Identity

81

5

Taking Account of Gender

117

6

Implications for Theory and Policy

133

Appendix A: Quantitative Data, Methods, and Analysis Appendix B: Qualitative Data, Methods, and Analysis Appendix C: Glossary of Terms References Index

vii

147 163 173 175 185

Tables and Figures

Tables Table 1.1. Descriptive Statistics of Demographic and Level of Impairment Measures among MobilityImpaired Adults in the Quantitative Sample

5

Table 1.2. Level of Impairment among Interview Respondents in the Qualitative Sample

6

Table 1.3. Demographic Characteristics of Interview Respondents in the Qualitative Sample

7

Table 4.1. Descriptive Statistics of Mobility-Impaired Individuals Who Self-Identify as Disabled and Not Disabled

83

Table 4.2. Identifying as Disabled Regressed on Environmental Barriers, Social Engagement, Impairment, and Reflected Appraisals

86

Table 4.3. Claiming an Identity as Disabled by Reflected Appraisals

88

Table 4.4. Physical Barriers, Social Barriers, and Impairment Experienced by Respondents from the Qualitative Interviews

93

Table 4.5. Self-Processes from Qualitative Interviews

95

Table 4.6. Number of Individuals Claiming an Identity as Disabled by Reflected Appraisals

97

Table 5.1. Identifying as Disabled Regressed on Environmental Barriers, Social Engagement, Impairment, and Reflected Appraisals among Females

ix

119

x

Tables and Figures

Table 5.2. Identifying as Disabled Regressed on Environmental Barriers, Social Engagement, Impairment, and Reflected Appraisals among Males

120

Table A.1. Criteria for Selection into the National Health Interview Survey on Disability (NHIS-D) Phase 2Adult Followback

148

Table A.2. Descriptive Statistics of the Non-Standardized Analytic Sample of Mobility-Impaired Adults

149

Table A.3. Descriptive Statistics of the Standardized Final Sample of Mobility-Impaired Adults

152

Table A.4. Results of the Product-of-Coefficients Tests of Significance of Indirect Effects of Environmental Barriers, Social Engagement, and Impairment on Identifying as Disabled Through Reflected Appraisals

153

Figures Figure 2.1. The World Health Organization’s International Classification of Impairment, Disability, and Handicap (ICIDH)

15

Figure 2.2. The World Health Organization’s International Classification of Functionality, Disability, and Health (ICF) 19 Figure 2.3. Conceptual Model for the Development of a Disabled Identity Figure A.1. Simple Model of Indirect Effects

38 159

Acknowledgments

We would be remiss if we did not thank Melissa Milkie, Jeffrey Lucas, Kris Marsh, Barbara Altman, and Katharine Abraham for the guidance and feedback they provided throughout all parts of our work on this book, from the initial study design to writing and interpreting the results. Their support is truly appreciated. Aaron Maitland deserves our thanks for helping with the preparation of the NHIS-D public-use dataset. We would also like to thank Robert Coalson for copyediting our manuscript and Andrew Berzanskis for his assistance and encouragement throughout the process. Finally, thanks to FirstForumPress and Lynne Rienner Publishers for their interest in our research and for providing us with a manner in which to share it with others.

xi

1 Embracing Disability?

Oscar Pistorius is a 26-year-old bilateral amputee. Born with no fibula in either leg, he was only 11 months old when doctors performed a bilateral amputation on him. Pistorius learned to walk on prosthetic legs at the age of seventeen months. In most contexts around the world and in the view of many observers, this amputation would qualify Pistorius to be identified as a disabled person, and his story would be one of personal tragedy. However, his story is not just the tale of a man who endured a bilateral amputation, but one of a world-class athlete who has competed with the best disabled and able-bodied sprinters around the globe. With the use of Össur Flex-Foot Cheetah carbon-fiber artificial limbs, Pistorius has been given the nickname “Blade Runner” (Pistorius 2009) and has been called the “fastest man on no legs.”1 At the 2007 South African National Championships, Pistorius ran a 400-meter sprint in 46.56 seconds, earning him second place. That time was, at the time, a personal best, and it encouraged Pistorius to set his sights on the 2008 Summer Olympic Games in Beijing. With his dreams of racing in the Olympics within reach, however, Pistorius was delivered a harsh blow. In March 2007, the International Association of Athletics Federations (IAAF), the international governing body for track and field, issued a new rule banning the use of technical devices containing elements that provide a user with advantages over other athletes. This ruling quickly prompted speculation that the IAAF intended to bar Pistorius from competing against able-bodied athletes at the international level. In response to this controversy, the IAAF sanctioned a series of tests in November 2007 by a team headed by Professor GertPeter Brueggermann to determine if Pistorius’ prostheses provided him any unfair advantage. Based on these tests it was determined that Pistorius did in fact have an unfair advantage over other able-bodied athletes, as he was able to run at the same speed as other able-bodied runners using less energy. As a result of this ruling, Pistorius was 1

2

Mobility Impairment and the Construction of Identity

banned from participating in the 2008 Olympic Games. In almost every other situation or context, the use of such artificial limbs would qualify someone as “disadvantaged.” Yet in Pistorius’ case, the same devices were determined to have the opposite effect - they had made him superable. Following the IAAF ruling, Pistorius filed an appeal in the Court of Arbitration for Sport and submitted to a second series of tests at Rice University in Houston, Texas. This reassessment found that there was in fact no scientific evidence that the use of Össur Flex-Foot Cheetah limbs provided any advantage to Pistorius over other runners. In May 2008, the Court of Arbitration for Sport ruled in Pistorius’ favor, leading the IAAF formally to grant him the right to compete in the 2012 Olympic Games in London, should he qualify. Following this reversal of the IAAF’s initial ruling, on July 19, 2011, in Lignano, Italy, Pistorius ran the 400-meter sprint in 45.07 seconds, a new personal best time. Pistorius became the first amputee to qualify for the World Championships (held in Daegu, South Korea, in 2011). There he helped his teammates win a silver medal in the 4x400-meter relay. His 400meter time of 45.07 seconds not only qualified him for the World Championships, but was also 0.18 seconds faster than the 45.25-second qualifying time needed to compete in the 2012 Summer Olympic Games. In August 2012, Oscar realized his dream of competing in the Olympic Games, where he reached the semifinal round in the individual 400 meter sprint, and assisted his teammates in placing eighth in final round of the 4x400-meter relay. In honor of his remarkable journey and great sportsmanship, Oscar was chosen by his teammates to carry the South African flag in the closing ceremonies of the 2012 London Olympic Games. Like the stories of many other people, Pistorius’ is one that challenges the conception of disability—and as such it is not without controversy. His dream of participating in the Olympics has been scrutinized not just formally by the IAAF, but also by many others. It has fueled and reignited discussions of what makes a person disabled. This discussion is not new—for decades, scholars, disability activists, and policy makers have all debated this very question. Like many others, Pistorius does not view of himself as disabled, despite the many others that reflexively label him as such: People often ask me how it is that with my artificial legs I can be qualified as anything but disabled? My answer is that, being far more able than they are in more than 90 percent of sports, why should I be qualified as a disabled sportsman? It has been said that using

Embracing Disability?

3

prostheses is proof of disability, but I fail to see why this aspect of my persona should overshadow all my sporting ability. (Pistorius 2009, p. 100)

Oscar Pistorius is not alone in disidentifying from a disabled identity. Research on such identification has often shown that not all individuals with physical impairment(s) identify as disabled (Watson 1998, 2002; Priestley 1999; Iezzoni et al. 2000; Taub et al. 2004; LoBianco and Sheppard-Jones 2007). This is not at all surprising given the stigmatization of disability. However, claiming an identity as disabled may have important implications for impaired individuals’ interpersonal interactions and their overall well-being. Claiming one’s identity as disabled can empower impaired individuals to advocate for their needs, such as accommodations in the built environment and equality in social interactions (Wendell 1996; Reeve 2002; Taub et al. 2004). Claiming this identity may also allow individuals to identify personally with other people who have disabilities and lead to a collective identity through which political action can be fostered (Wendell 1996). Claiming an identity as disabled also validates and legitimizes experiences of physical pain, fatigue, and decreased functionality (Wendell 1996). Thus, while such identity claims may be important on a personal level in the everyday lives of individuals, these claims also have broader implications that can affect families, communities, and policies. The goal of our book is to develop an understanding as to why some impaired individuals claim a disabled identity, why others reject it, and the implications of these choices. In order to reach this understanding, we recognize that it is necessary to identify what it means to be disabled. Historically, such identification has occurred through two predominant models—the medical model and the social model. The medical model of disability defines disability as an outcome of mobility limitations or psychological losses, and therefore locates the issue of disablement within the individual. In contrast to the medical model, the social model of disability defines disability as a socially constructed phenomenon that is imposed on impaired individuals. That is, the social model locates the source of disablement in physical barriers within the built environment and in social barriers (such as stigma) that hamper impaired individuals from fully participating in society. These models present important implications for the study of the acceptance or rejection of a disabled identity; however, we argue that the disablement process is much more complex than either of these two models suggest. Drawing on sociological social psychology theories of identity development, we

4

Mobility Impairment and the Construction of Identity

believe that impaired individuals engage in self-processes to make meaning out of their experiences of embodiment and barriers in their physical and social worlds, and ultimately these processes influence whether an individual either claims or rejects an identity as disabled. Additionally, an individual’s social statuses also play a role in identity construction, and the ability to claim or reject one’s disabled identity is also influenced by the context that social statuses such as age, race, gender, and social class create. To achieve an understanding of why some impaired individuals claim a disabled identity, we used a mixed methods approach that uses both quantitative data that are nationally representative for the United States and qualitative data from in-depth interviews to address three specific research questions. Our first question asks how do physical barriers (that is, barriers in the built environment), social barriers, and physical impairments influence the acceptance or rejection of a disabled identity. Second, we ask how do self-processes inform the acceptance or rejection of a disabled identity. And, finally, our last question asks how is the process of constructing an identity as disabled influenced by social statuses such as age, race, gender, and social class. The use of this mixed methods approach can enable us to reach a richer understanding of the process by which identities are constructed and allow us to better answer these three questions. The nationally representative data allow for the direct and quantifiable measurement of the relationship between physical and social barriers, physical impairment, self-processes, social statuses, and claiming an identity as disabled. In contrast, the qualitative data provide rich insight into the lived experiences of mobility-impaired people and the further elaboration of experiences that are not readily captured in the quantitative data. These data collectively allow for broad generalizations to be made without sacrificing the subtle detail that provides a more complete picture of such identity formation. Description of the Research

The data used to answer our research questions were drawn from a nationally representative U.S. sample and 30 in-depth interviews with people with varying degrees of mobility limitations. Mobility limitations were defined as: the inability to walk; having difficulty walking for onequarter of a mile; walking up ten steps without resting; being on their feet for about two hours; sitting for about two hours; stooping, crouching, kneeling, or being unable to kneel by themselves without the use of aids; OR reliance on assistive devices—such as a walker, scooter, wheelchair, cane, or crutches—to get around. The data used in the

Embracing Disability?

5

Table 1.1. Descriptive Characteristics of Demographic and Level of Impairment Measures among Mobility-Impaired Adults in the Quantitative Sample (unweighted n=3,637) Range

Mean

SE

0-1

0.14

0.01

18-64

46.46

0.23

Female

0-1

0.67

0.01

Married

0-1

0.48

0.01

Employed

0-1

0.44

0.01

Education

1-5

2.34

0.02

0-26

17.22

0.14

Severity of movement difficulty

0-5

2.62

0.03

ADL limitations

0-5

0.75

0.03

IADL limitations

0-6

1.02

0.03

Use mobility aid

0-1

0.24

0.01

Demographic Black Age (in years)

Income

Level of Impairment

Data source: NHIS-D 1994-1995 Notes: Estimates are weighted. SE = standard error; ADL = activity of daily living; IADL = instrumental activity of daily living.

quantitative analyses came from the 1994 and 1995 National Health Interview Survey on Disability (NHIS-D). The NHIS-D sample was limited to African American and Caucasian respondents with mobility impairments, all aged between 18 and 64 years, who participated as selfrespondents in Phase I and Phase II of the NHIS-D survey (n=3,637). The majority of the respondents in the NHIS-D sample were white and female (Table 1.1). In terms of education, 24.7% had less than a high school education, 38.9% had a high school degree, 22% had some college, 7.5% had a baccalaureate, and 6.8% had a professional degree

6

Mobility Impairment and the Construction of Identity

beyond college. The average income was $17,000-17,999. The mean age of respondents was 46 years old. The same criteria noted above that were used to establish the quantitative dataset were also used to determine which respondents were eligible for participation in the interviews and inclusion in the qualitative sample. For the qualitative analyses, in-depth interviews were conducted with thirty adults, all aged between 18 and 67 years, who had varying mobility limitations (Table 1.2). Table 1.2. Level of Impairment Among Interview Respondents in the Qualitative Sample (n=30) Range

Mean

0-1

0.83

Walking ¼ mile

0-3

2.13

Walking 10 steps

0-3

1.73

Reaching

0-3

0.79

Lifting 10 lbs.

0-3

1.53

Performing housework

0-3

1.47

Preparing meals

0-3

0.93

Bathing

0-3

0.69

Dressing

0-3

0.67

Mobility Aid Use mobility aid Movement Difficulty Difficulty…

ADL/IADL Limitation Difficulty…

Notes: ADL = activity of daily living; IADL = instrumental activity of daily living.

In terms of demographic characteristics, the sample consisted of an almost equal number of women and men; however, the sample predominately self-identified as black (Table 1.3). The qualitative interviews lasted one hour, and respondents were remunerated for their

7

Race Black White Multi-racial Age (in years) 26-39 40-49 50-67 Gender Female Male Marital Status Married Not married Work Status Employed Unemployed Education Less than high school High school Some college Baccalaureate degree Graduate degree Income $20,000 or less $20,001-$30,000 Over $30,000

n

%

25 3 2

83.3 10.0 6.7

5 9 16

16.7 30.0 53.3

16 14

53.3 46.7

2 28

6.7 93.3

9 21

30.0 70.0

2 13 11 3 1

6.7 43.3 36.7 10.0 3.3

25 3 2

83.3 10.0 6.7

ff-art-blankp_Layout 1 11/8/12 3:02 PM Page 1

Table 1.3. Demographic Characteristics of Interview Respondents in the Qualitative Sample (n=30)

8

Mobility Impairment and the Construction of Identity

time. These interviews were conducted in 2009 as part of a larger cognitive-testing project conducted by staff at the National Center for Health Statistics. Respondents were first administered a questionnaire that asked about their experiences with physical barriers and needs for accommodation in the home, community, transportation, and the workplace; their experiences of discrimination and social inclusion; whether they themselves identify as disabled; and whether they perceive that others view them as disabled. This questionnaire served as a guide for interviewers for the remaining interview time, during which respondents were asked to discuss in-depth their experiences of physical and social barriers and their subjective experiences of their impairment and identity construction. Additional information on both the quantitative and qualitative samples and data-collection procedures can be found in the Appendix. Outline of the Book

Throughout this book, theoretical and empirical evidence is used to develop an understanding of why impaired individuals either claim or reject an identity as disabled, and what the implications for these disabled-identity claims are. This process begins in Chapter 2, where we draw on the theoretical literature and outline existing models of disability and the theories of self-concept that together are fundamental to understanding the complex relationship among barriers, impairment, and self-processes that result in a disabled-identity construction. We first compare existing models of disability and then follow with a discussion of the need for a more complex model of disablement that simultaneously accounts for both bodily and social experiences. Following this, we present a background of the sociological social psychology approach to identity construction. Drawing on a symbolic interactionist framework, we outline three mechanisms of identity construction that in our case are used to understand a disabled identity: social comparisons, self-presentations, and reflected appraisals. We finish Chapter 2 by providing a model of how these concepts are related to one another and can ultimately influence the creation of a disabled identity. In Chapter 3, using the conceptual model as a guide, we analyze data from the qualitative interviews to describe the everyday experiences of living with impairment, using the words of those impaired individuals themselves. This paints a picture of the reality of the difficulties these individuals face, often with daily tasks that able-bodied people take for granted. In this chapter, we detail mobility-impaired individuals’

Embracing Disability?

9

experiences with navigating physical and social barriers and their bodily experiences of physical impairment. Despite the advances made with the 1990 Americans with Disabilities Act (ADA), the respondents we interviewed continued to experience numerous physical and social barriers in their homes and communities almost twenty years after the passage of the ADA. Along with the descriptions of these experiences, we provide insight into the impaired individuals’ everyday experiences with pain, fatigue, and other symptoms that are related to their impairment. In Chapter 4, we explore two specific questions. First, how do environmental barriers and level of impairment influence the acceptance or rejection of a disabled identity? And second, how do self-processes inform the acceptance or rejection of a disabled identity? Empirical evidence used to answer these questions was amassed through a quantitative and qualitative mixed methods approach. Regarding the quantitative analyses, we demonstrate that experiences of environmental barriers, social engagement, and impairment are mediated through selfprocesses (specifically, reflected appraisals) to shape identity claims. For the second component of our analyses, we again use qualitative data and examine in-depth how mobility-impaired people make meaning out of their experiences of physical and social barriers and bodily experiences of impairment, as well as the role of self-processes, by integrating these experiences into their understanding of self, and we consider how ultimately these experiences shape the identity claims of these individuals. In our analysis of the interviews, we are able to explore two other self-processes that were not captured in the NHIS-D survey data: social comparisons and self-presentations. The result is a discussion of three identity groups: those who identify as disabled, those who reject this identity, and those who are currently in the process of negotiating this identity. The discovery of a third identity group is unexpected, yet in examining the narratives of impaired persons we are able to shed light on the unique experiences of specific individuals who are in the process of negotiating a disabled identity. We turn our attention in Chapter 5 to the question of how the construction (or rejection) of an identity as disabled is influenced by gender. With our data from the 1994-1995 NHIS-D, we examine how the relationship between claiming a disabled identity, and environmental barriers, social engagement, and impairment differs among men and women. Furthermore, we explore gender differences in reflected appraisals and claiming one’s identity and the indirect effects of gender. We then analyze the qualitative interview data and explore the relationship between gender and claiming a disabled identity, noting two

10

Mobility Impairment and the Construction of Identity

important findings. First, how male and female gender roles affected identity claims; and second, how disability influenced the enactment of gender for both men and women. We conclude in Chapter 6 by using the findings to answer the three research questions we posed above. The results of these overall research findings are then used to discuss the larger implications of this work, both for the mobility-impaired individuals themselves and for persons involved in policy and practice. Note 1. More information on Oscar Pistorius can be found at his official website (http://www.oscarpistorius.com/).

2 Building on Models of Disability

The manner in which disability is defined has significant implications for those who are identified as disabled in social policy, research, and society at large (Morris 1991; Altman 2001). These definitions inform the process of how individuals make sense of their impairments and construct (or reject) an identity as disabled. However, such a definition is not as apparent as one may expect, and a consensus is lacking as definitions of disability vary greatly among academics, policy makers, medical professionals, and laypeople (Altman 2001). Historically, definitions of disability were dominated by so-called medical models of disability that located the source of disablement within a person or individual and focused on rehabilitation as an outcome (Oliver 1996). This manner of defining disability has begun to change over time as environmental factors have been recognized as an important component of the disablement process (Whiteneck 2006). This increased attention to environmental factors is being driven in part by the success of the social model of disability, a conceptualization that challenges the individualization and medicalization of disability that is a dominant feature of medical models of disability. Unlike medical models, the social model identifies society—not the individual—as the source of disability. More specifically, this model defines disability as a socially constructed phenomenon stemming both from the physical barriers in the built environment and social barriers in society that prevent impaired individuals from fully participating in society (Oliver 1996; Shakespeare and Watson 2001). There has been much debate in disability research over the importance of the environment in the disablement process. On one hand, research on the stigmatizing effect of physical and social barriers has found that there is a strong relationship between the environment and perceptions of stigmatization (Morris 1991; Cahill and Eggleston 1995; Toombs 1995; Kaufman-Scarbourough 2001; Connors and Stalker 11

12

Mobility Impairment and the Construction of Identity

2007). Yet on the other, research that examines the impact of environmental barriers on participation in society has produced mixed findings. Certain studies have found that encounters with physical barriers in the community limit one’s participation in society (Rouchette et al. 2001; Hendershot 2007), while other studies show that encounters with physical barriers are actually associated with more societal participation (Keysor et al. 2006). Other empirical evidence indicates that physical barriers affect impaired individuals’ ability to participate in society, but this effect is dependent upon personal factors and levels of impairment (Noreau, Fougeyrollas, and Boschen 2002; Dijker et al. 2002; Whiteneck et al. 2004). Regarding disabled identities, scholars of the social model of disability contend that impaired individuals’ encounters with both physical and social barriers in the environment contribute to the conceptualization of the self as disabled (Oliver 1990; Hughes and Patterson 1997; Shakespeare and Watson 2001), while others maintain that impairment itself has real implications for a person’s selfidentification as disabled (Morris 1991). As we examine how disabled identities are constructed, it is important to keep both of these paradigms (i.e., the medical model of disability and the social model of disability) in mind, as they are both likely to shape societal responses to impairment and therefore have an impact on daily social interactions between impaired and non-impaired individuals (Oliver 1996). In turn, such interactions influence how people with impairments form their views of themselves. Consideration of such interactions and the formation of self have been recognized through the writings of a number of scholars who have called for a more expansive model of disablement that includes factors that are biological, social, and psychological in nature (Crow 1996; Oliver 1996; Shakespeare and Watson 2001; Thomas 2004). Studies on the effects of biological and social factors on the disablement process provide support for arguments that ultimately call for a more encompassing model of disability (Priestley 1999; Watson 2002; LoBianco and Sheppard-Jones 2007). Additionally, these studies find self-processes (i.e., reflected appraisals and social comparisons) play a vital role in the identification process. However, they are limited in that they do not discuss how self-processes, biological factors, and socially constructed barriers are related to one another. Furthermore, they also do not explicate how such factors ultimately influence identity, and they do not address the variability in identity construction that results from socially stratified positions located throughout a society. Thus, in order fully to facilitate an understanding of how both biological

Building on Models of Disability

13

factors and socially constructed barriers influence the identification of one’s self as disabled, taking a stance that is influenced by the symbolic interactionist framework is also necessary. Within the symbolic interactionist framework, theorists have posited that individuals come to understand their self and their position in social structure as a result of the feedback they receive from others during social interactions (Cooley 1902; Mead 1934). This process of understanding is recognized in the theoretical literature as occurring through three self-processess: social comparisons, self-presentations, and reflected appraisals (Rosenberg 1986). First, individuals make social comparisons between themselves and others to understand their self and their position in society (Festinger 1954; Rosenberg 1986). Second, individuals’ self-presentations are a mechanism through which individuals present their identities and social roles to others. Through such presentations they provide important information to all parties on how to interact with one another (Goffman 1959). Finally, developing an understanding of self also occurs through reflected appraisals, which provide feedback to individuals not only regarding how significant others view them, but also how society as a whole views them (Rosenberg 1981). In terms of disability, these processes (reflected appraisals, social comparisons, and self-presentations) are important in determining whether impaired individuals claim their identity as disabled. Whether or not they make such a claim is dependent upon the types of messages they receive regarding their impairments through these self-processes, which then either validate or undermine their identity claims. Drawing from these theoretical perspectives, in this chapter we briefly outline three important models of disability that account for impairment and environmental barriers, and then we provide additional detail on the theories of identity construction from a symbolic interactionist framework that can be integrated with these disability models to provide a broader understanding of how a disabled identity is either claimed or rejected. Following this, we also briefly discuss the influence of an individual’s major social statuses and how these relate to disability. After this review, we then take the theoretical and empirical evidence discussed and present the conceptual model of disabled identity construction that we have developed to navigate our empirical analyses, which are presented throughout the subsequent chapters.

14

Mobility Impairment and the Construction of Identity

Conceptual Models of Disability

The medical model of disability is an umbrella term used to identify an array of conceptual models that locate the source of disability within the individual. Various researchers and organizations have presented different versions of medical models, with examples including the World Health Organization’s (WHO) International Classification of Impairment, Disability, and Handicap (ICIDH) (WHO 1980) and International Classification of Functionality, Disability, and Health (ICF) (WHO 2001); Nagi’s model of disablement (Nagi 1965, 1991); the National Institute of Medicine’s two Institute of Medicine models (IOM-1 , IOM-2) (Brandt and Pope 1997); and Verbrugge and Jette’s disability model (Verbrugge and Jette 1994).1 The various versions of these medical models have served a number of different purposes, including guidance for administrative action (i.e., determining who should receive social benefits and legal protection), epidemiological research, economic research, and clinical assessments. Regardless what specific model is used or for what purpose, in all instances these models share the underlying characteristic of how disability is defined—within the individual (Altman 2001). That is, they define disability as emerging from pathology or disease (i.e., an interruption in the body’s normal functioning), which in turn leads to impairment (i.e., bodily abnormalities and losses), followed by mobility limitations (i.e., restrictions or inability to perform usual roles or everyday tasks), which culminate to cause disablement (Altman 2001). One of the most widely cited—and most critiqued—medical models was the WHO’s ICIDH, displayed below in Figure 2.1. This model was developed in 1980 as a means to both classify and measure health and disease on the international level (WHO 1980). To meet these objectives successfully, this model was originally designed to standardize the concepts and terms used in statistical research on health services, filing and retrieving health records, and applications in professional fields such as medical, rehabilitation, and social welfare (Gray and Hendershot 1998). In the ICIDH model, diseases and disorders are depicted as leading to impairment, which is defined as the loss or abnormality in an individual’s psychological, physiological, or anatomical structure or functioning (WHO 1980). Impairments can then subsequently lead to disability or a restriction or lack of ability to perform specific activities. According to the ICIDH model, individuals can then experience handicaps as a result of their impairments and disabilities. In the ICIDH, a handicap is defined as a limitation that prevents an individual’s fulfillment of survival roles (WHO 1980; Gray and Hendershot 2000) or

Building on Models of Disability

15

the roles an individual is expected to perform based on their age, gender, and social position (WHO 1980; Gray and Hendershot 2000). Figure 2.1. The World Health Organization’s International Classification of Impairment, Disability, and Handicap (ICIDH)

Source: World Health Organization (1980)

This ICIDH model was highly criticized in disability studies for a number of reasons. First, researchers claimed that the ICIDH uses pejorative language (Pfeiffer 1998) and may discriminate by furthering the conception of disability as an abnormal state (Oliver 1990). Second, this conceptual model gives no clear distinction between some of its specific components. For example, in the ICIDH it is not clear what the precise difference is between impairment and disability or between disability and handicap. Furthermore, claims have also been made that the relationships among the components of the ICIDH model were not fully developed (Gray and Hendershot 2000). Another criticism of the ICIDH model is that it views disability as a static state of being and as a result ignores the experiential and situational nature of disability (Oliver 1990). And the most notable criticism of the WHO’s ICIDH model has been that it locates the source of disability in the individual and, in turn, ignores the role of the environment in the disablement process (Oliver 1990; Whiteneck 2006). This lack of consideration for the role of one’s environment in the disablement process has important implications. First, models such as the ICIDH that do not recognize the environment perpetuate stereotypes of individuals with impairments as enacting a “sick role” in society (Hirsch and Hirsch 1995) and foster viewing such individuals as abnormal. Disability scholars posit that as long as disability is viewed as an individual tragedy, people with impairments will continue to be treated as individual victims who need to be rehabilitated in order to participate in society. Furthermore, this particular conceptualization of disability has direct effects on the social interactions that occur between an individual and others, as well as the social policies that pertain to disability (Oliver 1990). Conversely, defining disability as a social oppression allows disabled people to be viewed as “collective victims of an uncaring and

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unknowing society,” which could ultimately lead to a shift in social policy away from rehabilitation to focus on alleviating oppressions that occur in the form of physical and social barriers (Oliver 1990. p. 2). This particular argument—that a failure to recognize the role of the environment on disability has adverse consequences for impaired individuals—was the impetus to the development of the social model of disability. The social model of disability emerged from the British Disability Movement in the 1970s as a response to the limitations of the existing medical models of disability (Thomas 1999). This social model gained even greater recognition over a decade later with the work of Mike Oliver (1990, 1996). Based on the Union of the Physically Impaired Against Segregation’s (1976) publication Fundamental Principles of Disability, where a redefinition (and separation) of impairment and disability was offered, the social model of disability centers on the idea that disability is a socially constructed phenomenon imposed upon individuals with impairments (Oliver 1990; Hughes and Patterson 1997; Shakespeare and Watson 2001). In this model, impairment is defined as “lacking all or part of a limb, or having a defective limb, organism, or mechanism of the body” (Oliver 1996, p. 22). In contrast, disability is distinctly defined as “the disadvantage or restriction of activity caused by a contemporary social organization which takes little to no account for people who have physical impairments and thus excludes them from participation in the mainstream of social activities” (Oliver 1996, p. 22). Therefore, instead of viewing disability as a sole outcome of the impairment itself, the social model views disability as emerging from the interaction between impairment and the social environment (Thomas 1999). In other words, disability is dependent upon an impaired individual’s integration into his/her community and his/her ability to socialize, work, and be independently mobile (Oliver 1996). Since the formulation of the social model of disability, numerous studies have detailed mobility-impaired individuals’ experiences with physical barriers in the built environment that have prevented them from fully participating in work and social life (Toombs 1995; Watson 1998; Kaufman-Scarbourough 2001; Connors and Stalker 2007; Hendershot 2007). For example, using data that was nationally representative for adults in the United States, Hendershot (2007) found impaired individuals cited poor building design, crowds, lack of transportation, difficulty with sidewalks and curbs, noise, and poor lighting as reasons they do not have more active participation in their communities (Hendershot 2007). This finding is not terribly surprising as built environments are often not accommodating to those with mobility

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impairments, and performing everyday tasks, such as shopping and socializing with friends/family, becomes an act that requires thoughtful planning and anticipation of potential difficulties (Toombs 1995). As a result, impaired individuals are less likely than able-bodied individuals to participate in their communities, with this gap being larger for individuals who are more impaired (Hendershot 2003). Although this finding may not necessarily be surprising, it nevertheless is important as it provides empirical evidence to the underlying arguments used as a basis for the social model of disability. In addition to experiences with physical barriers preventing full participation in work and social life, impaired individuals’ encounters with discrimination and oppression during daily interactions have also been widely cited in the literature (Morris 1991; Cahill and Eggleston 1995; Toombs 1995; Harris Interactive, Inc. 2000; KaufmanScarbourough 2001; Connors and Stalker 2007). In studies that have collected and analyzed various types of data sources, such as impaired individuals’ personal accounts of social interactions with able-bodied others and participant observation, impaired individuals are often found to be treated as “non-persons.” They are often stared at, ignored, talked to in a degrading manner, or subjected to inappropriate (and sometimes even hostile) comments and gazes by able-bodied others (Morris 1991; Cahill and Eggleston 1995; Toombs 1995; Connors and Stalker 2007). Additionally, disabled individuals must deal with unsolicited help from able-bodied others and overt sympathy when out in public (Morris 1991; Cahill and Eggleston 1995; Toombs 1995; Kaufman-Scarbourough 2001; Connors and Stalker 2007), as able-bodied others may often assume that because these individuals are impaired, they require assistance (Fine and Asch 1988). Impaired individuals are also frequently subjected to stigma and stereotypes regarding their impairment and are not afforded the same kind of privacy rights as are able-bodied individuals (Cahill and Eggelston 1991; Morris 1991; Wendell 1996). Compared to medical models of disability, the social model of disability broadens our understanding of how disability is socially constructed. However, as with these medical models, the social model is not without its criticisms. In particular, the social model has been critiqued for giving too much precedent to the environment and its social barriers and for overlooking the reality of how impairment itself impacts the lived experiences of impaired individuals (Morris 1991, 1996; French 1993; Crow 1996; Hughes and Patterson 1997; Hughes 2004; Thomas 2004). Critics of this social model also claim that even if all barriers in society were removed, people with impairments are likely to

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Mobility Impairment and the Construction of Identity

continue to experience physical and emotional symptoms such as chronic illness, pain, fatigue, and depression as a result of their impairment. Ultimately such experiences with these adverse physical and emotional symptoms have a significant impact on their daily lives (Morris 1991; French 1993; Crow 1996). It should not be ignored that the social model of disability is quite successful in empowering impaired people to confront and cope with daily encounters of exclusion and discrimination. However, this model also leaves them without a platform with which to cope with bodily experiences of impairment (Morris 1991; Crow 1996).2 In fact, despite the vast success of the social model in challenging the previous conventional conceptualization of disability, individuals often do experience their impairment and their disability from an individual, bodily level (Higgins 1992; Wendell 1996; Watson 1998). For example, despite recognizing the various barriers in society that limit their ability to actively participate, impaired individuals continue to discuss how they themselves could personally adjust to their environment, rather than discussing how the environment could adjust to their personal needs (Higgins 1992). Furthermore, although it is possible to separate out the effects of individual-level factors (i.e., impairment) from social factors (i.e., barriers) of disability in a theoretical context, impaired individuals are likely to experience these things simultaneously (Giddens 1991; Hughes and Patterson 1997). Collectively these limitations of the social model have led some scholars to call for a model that integrates elements from both medical and social models of disability, such that individual-level experiences of impairment and social experiences of disablement are accounted for simultaneously in a single conceptual model (Crow 1996; Hughes and Patterson 1997). In response to the many criticisms of the ICIDH, and the push by various academic and advocacy groups for more focus on environmental factors, the WHO published a new conceptual model, the International Classification of Functionality, Disability, and Health (ICF) (Figure 2.2).3 The ICF is a revised version of the ICIDH. Taking ideas from the social model of disability, the most notable improvement relative to the ICIDH is the ICF’s incorporation of social experiences. According to the ICF conceptual model, the process of disablement begins with health conditions such as the experiences of disorder and disease. These health conditions are recognized as possibly leading to impairment, which is defined as “problems in body function or structure such as a significant deviation or loss” (WHO 2001, p. 10). Next, impairment is conceptualized as leading to one or a variety of activity limitations at the personal level, such as (among others): moving around, performing self-

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care tasks, and performing domestic activities (Gray and Hendershot 2000; WHO 2001). Activity limitations can then cause the individual to experience participation limitations, as measured based on an impaired individual’s ability to participate in society fully. It is noteworthy that this component of the ICF model (i.e., participation limitations) is assessed by comparing an impaired individual’s involvement in life activities to the participation levels of those who are able-bodied (Gray and Hendershot 2000; WHO 2001). The final component of the ICF model of disability is contextual factors, which include both environmental and personal factors that interact with the individual’s health condition to determine the extent and limitations of their functioning (WHO 2001). Examples of such environmental factors identified in the ICF include physical environmental barriers and attitudes of a society (WHO 2001). Similar to the ICIDH (WHO 2001), the ICF still maintains a goal of facilitating international comparisons. Therefore, personal factors are not classified in the model due to crosscultural differences (Gray and Hendershot 2001). However, these could include such things as an individual’s race/ethnicity, gender, age, and fitness level, to name a few. Figure 2.2. The World Health Organization’s International Classification of Functionality, Disability, and Health (ICF)

Source: World Health Organization (2001)

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Mobility Impairment and the Construction of Identity

The ICF considers environmental factors, yet similar to the medical models of disability discussed earlier, it still locates disability as stemming from the individual (Shakespeare and Watson 2001). Additionally, the ICF conceptual model’s use of social and environmental factors as determining criteria of disablement remains illdefined (Gray and Hendershot 2001). While the ICF model recognizes an individual’s interaction with his/her environment is influential in the disablement process, it does not define disablement as a social oppression. Furthermore, the model also does not distinguish between that which is biological and that which is social—an important distinction made in the social model of disability (Shakespeare and Watson 2001). Similar to the approach used by the ICF of taking elements from both the medical and social models of disability, Crow (1996) contends that in order to gain a better understanding of the effect of impairment on individuals’ lives we need to examine impairment in three distinct manners: (1) objective experiences, such as lacking a limb or having a defective limb or bodily mechanism; (2) subjective experiences, such as the meaning individuals apply to their impairment; and (3) the wider social context, such as social exclusion, discrimination, and barriers in the built environment that disable people. More recent research has begun to examine both social and individual/medical factors of disability, and the subjective meaning of these two factors to the individual. As a result, studies using this approach have produced empirical evidence to support arguments for using a more encompassing conceptual model of disability than those that have been used in the past (Priestley 1999; Watson 2002; LoBianco and Sheppard-Jones 2007). Such research has found that indicators of disability from both the social and medical models were able to predict whether an individual claims a disabled identity (Priestley 1999; LoBianco and Sheppard-Jones 2007). For example, having a mobility limitation, using mobility aids, and the inability to perform daily tasks independently have all been found to increase the likelihood that individuals with impairments will identify as disabled (Priestley 1999; Zitzelsberger 2005; LoBianco and SheppardJones 2007). On the other hand, being in accommodating physical spaces, the ability to engage in social activities such as spending time with friends and participating in entertainment activities decrease the likelihood that individuals with impairments will identify as disabled (Zitzelsberger 2005; LoBianco and Sheppard-Jones 2007). One study also found that individuals who recognized social barriers as disabling them (rather than simply their impairment) were subsequently capable of rejecting the stigma associated with their impairments, and as a result

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these individuals were then able to make other identity claims for themselves (Watson 2002). Finally, past studies have found that medical- and social-model indicators of disability both affect how individuals with impairments perceive others to view them, and how they self-identify as disabled (Priestley 1999; Watson 2002; LoBianco and Sheppard-Jones 2007). Using a U.S. nationally representative sample from the National Health Interview Survey on Disability, one study found indicators of disability from the social model (i.e., social activities, marital and employment status), and indicators of disability from the medical model (i.e., activity limitations and use of mobility aids), both significantly predicted whether impaired individuals perceive themselves as disabled, and their perceptions of others’ views of them as disabled (LoBianco and Sheppard-Jones 2007). While interesting, this study was limited in that it did not account for the relationship between the individuals’ perceptions of how others view them and the individuals’ identities; nor did it meaningfully address the context formed by social status location. Similar to the findings in the aforementioned study, using small convenience samples two other empirical studies also found the socialand medical-model indicators of disability to affect one’s claiming of a disabled identity (Priestley 1999; Watson 2002). Although one of these smaller studies did focus on the personal narrative as an important tool in maintaining identities (Watson 2002), both also shared the limitation of not drawing upon other self theories to explain how these identities are constructed. Collectively, the conceptual models of disability and related studies cited above provide insight into how experiences with socially constructed barriers and impairment are related to identities as either disabled or able-bodied. While their claims and empirical evidence are enlightening, we believe that accounting for the individual’s perception of the views of others is extremely important, and their omission masks the full nature of the pathways that yield one’s identity claims. As such, these studies fail to consider an extremely important component of the identity process: how both impairment and environmental barriers affect identity through self-processes. Although these studies have highlighted direct relationships between barriers, impairment, and identity, a fuller understanding of these relationships will remain elusive until the selfprocesses involved are accounted for. Such consideration has not been given by previous models of disability, and therefore drawing solely on the tenets laid in the medical and social models of disability will not suffice. Instead, complementary conceptual and theoretical guidance is

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needed to be used to determine how self-processes can be integrated with these tenets of existing conceptual models of disability. Self-processes in the Symbolic Interactionist Framework

We argue that the widely used symbolic interactionist framework can assist with integrating various self-processes with established conceptual models of disability. The underlying assumption posited by the symbolic interactionist framework is that identity construction (and, more generally, self-concept construction) occurs through social interaction. In this approach, the self is innately social, where individuals come to understand their own self as a result of the feedback they receive from significant others and the “generalized other” regarding the validity of their identity claims (Mead 1934; Rosenberg 1986).4 Thus, the formation of identity occurs through three related (albeit distinct) selfprocesses: social comparisons, self-presentations, and reflected appraisals (Rosenberg 1986). Social Comparisons

Social comparisons are an important mechanism through which individuals learn about their self and their place in society. During this process individuals will compare themselves to others, and in doing so make evaluations of their own self based on standards set by internal idealizations regarding the object (others) to which they are comparing themselves (Festinger 1954; Rosenberg 1986). In Festinger’s (1954) original theory of social comparisons, he argued that such comparisons consisted of unidirectional upward drives, where individuals engage in upward social comparisons in order to evaluate their abilities and opinions against some set standard (i.e., those persons who are marginally better off than themselves). Depending on whether individuals compare favorably or unfavorably to others, individuals can experience either a positive or negative view toward their self and a corresponding increase or decrease in their self-esteem (Festinger 1954; Rosenberg 1986). Ultimately, Festinger saw this process as a motivational mechanism to improve oneself. However, Festinger’s original claim that social comparisons are unidirectional has been challenged and discredited by subsequent empirical research (Wills 1981; Taylor and Lobel 1989). Instead, research has found that individuals have agency in deciding with whom they will compare themselves (Singer 1981; Rosenberg 1986). For example, studies show individuals are more apt to make downward

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social comparisons when they feel their self is under threat and during instances where they are motivated to view the self in a more favorable light (Wills 1981; Gibbons and Gerrard 1991; Wood and VanderZee 1997). In other words, they compare themselves to others who are less fortunate, and by making this social comparison to others in society who are more disadvantaged, individuals are therefore able to make more positive self-evaluations (Wills 1989). Social identities are dependent upon the ability of in-group and outgroup members (for example, disabled and not disabled) to make social comparisons between themselves and members of opposing groups and, as a result, to verify their own group membership (Hogg 2000). However, social identity theory posits that when group boundaries are viewed as permeable, members of low status or stigmatized groups will often try to pass into higher status groups through these less rigid boundaries (Hogg and Abrams 1988). In order for this to occur, and an individual to pass from a stigmatized social identity group to another group of higher status, it may be necessary to make downward social comparisons between oneself and his/her own in-group members (Hogg 2000). The arguments and tenets presented by the process of social comparisons are particularly important when examining social identities such as disabled and have been cited in the disability literature as an important component of the process of individual self-identification as disabled (Priestley 1999; Watson 2002). In this example, impaired individuals make upward social comparisons by comparing their self to able-bodied others in order to understand their impairments and “differentness” (Priestley 1999; Watson 2002). At the same time, these individuals identifying as disabled will also make downward social comparisons by comparing themselves with other impaired individuals in order to make sense of their standing within the disabled community (Priestley 1999). Self-presentations

In addition to making social comparisons between themselves and others, individuals also actively maintain self-presentations of themselves during social interactions. Such self-presentations serve to define the interaction as they provide information to all individuals in the interaction regarding how to interact with one another and, in particular, what behavior is appropriate (Goffman 1959). These presentations can include both verbal assertions regarding the self, and nonverbal cues such as physical appearance and/or behavior (Goffman

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Mobility Impairment and the Construction of Identity

1959). Appearances and mannerisms are both functions of what Goffman referred to as “personal fronts,” or characteristics of an individual that are always present. However, it is important to note that personal fronts are not fixed—individuals may alter these fronts depending on the context of an interaction or the reactions they wish to receive from others. During social interactions, individuals learn information about the others with whom they are interacting based on the personal fronts these others are presenting, and the symbolic cues in these others’ fronts that inform individuals of these others’ social roles. Depending on the information received from others during such an interaction, individuals may adjust their self-presentations as they see fit. Individuals may also give self-presentations that are not necessarily in line with how they view their own self (Goffman 1959; Rosenberg 1986); such performances may serve to ease the interaction and/or maintain the self-esteem of these individuals (Goffman 1963; Rosenberg 1986). In the case of mobility-impaired people, variables such as mobility aids, movement difficulty, and immobile or missing limbs can cue others to their physical impairment. At the same time, mobilityimpaired individuals who wish to reject a disabled identity can alter their mannerisms or behaviors in a way that may contradict or alter others’ views of them as impaired, despite the fact that they view themselves as impaired. This may entail either hiding their impairment (Goffman 1963), as mentioned above, or behaviorally demonstrating their physical abilities (Taub and Greer 2000; Watson 2002). Reflected Appraisals

Another important, key mechanism of identity development that has traditionally been neglected in the disability literature is the reflected appraisals process. There are three important components to the reflected appraisals process that each emerge from social interactions (Rosenberg 1981). The first component is actual appraisals.5 These types of appraisals are what Rosenberg considered to be “the social self,” meaning how others actually see an individual. The second component, perceived appraisals, refers to individuals’ perceptions of how particular others view them. These types of appraisals are more often referred to in the literature as reflected appraisals.6 The third and final component is the generalized other, or individuals’ perceptions of the attitudes of the community as a whole. The generalized other can be further distinguished by distinct sub-cultural groups within society. For example, above we described how impaired individuals may hold perceptions of how disabled others and able-bodied others view them.

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Drawing on the work of Mead (1934) and Cooley (1902), Rosenberg (1986) contends that as individuals interact, they receive information from others regarding their selves. However, because others do not always directly tell these individuals how they are viewed, others’ actual appraisals of individuals are believed to be mediated through individuals’ reflected appraisals. This in turn affects individuals’ selfappraisals; that is, how these individuals view themselves (Rosenberg 1986). While the reflected appraisal process has been widely accepted in the self-concept literature, it has also been critiqued over the years. One particular criticism is that the reflected appraisal process (and Mead’s general theory of taking on the role of the other) falsely assumes that individuals openly communicate their attitudes toward others during social interactions (Felson 1980). Another criticism is that reflected appraisals more accurately reflect individuals’ own self-appraisals than others’ actual appraisals (Felson 1981, 1989; Ichiyama 1993). In fact, this criticism has been supported by numerous studies that have found individuals’ perceptions or reflected appraisals do not accurately reflect others’ actual appraisals (Shrauger and Schoeneman 1979; Felson 1981, 1985, 1989; DePaulo et al. 1987). However, in response to this criticism it is argued that the concept of reflected appraisals was never meant to serve as a measure of how others actually see individuals, but rather how these individuals think others see them (Rosenberg 1981). A final criticism is that reflected appraisals may better represent individuals’ perceptions of how the generalized other, or society, views them, rather than how significant or specific others view these individuals. Subsequent studies have generated evidence of this critical claim (Felson 1985; DePaulo et al. 1987). Even in light of these criticisms, the reflected appraisal process is still widely used to guide empirical research. Many scholars maintain that the reflected appraisal process is critical to understanding selfprocesses, as reflected appraisals bridge the relationship between social structure and social interaction, on one hand, and the self-concept, on the other (Rosenberg 1986). Furthermore, individuals may be more agentic in selecting and integrating evaluations of themselves into their self-concept than the above studies indicate (Franks and Gecas 1992). In fact, certain research findings suggest that individuals are capable of playing an active role in selecting the individuals with whom they interact—usually those people whose appraisals they view as most meaningful—thus ultimately affecting others’ actual appraisals toward themselves (Rosenberg 1986; Ichiyama 1993; Gecas and Burke 1995; Milkie 1999; Kaufman and Johnson 2004).

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Identity Construction

Each of these three self-processes—social comparisons, selfpresentations, and reflected appraisals—provide an understanding of individuals from their own views of themselves and their understanding of how others view them. Yet it is Burke’s (1991) identity control theory (ICT) that explicates how these self-processes come to shape identity. According to Burke, the self is an occupant of a role that interacts within the larger social structure and in accordance with the shared cultural meanings prescribed to that role. Therefore, in ICT these roles are viewed as the link between the self and social structure. Given that experiences vary from person to person, any role could have multiple meanings, causing the identities associated with that role to vary as well (Turner 2003). The result is that roles have different meanings for different people. Identities are self-meanings that develop out of the roles or statuses one holds, and subsequently identities only predict behavior when the meaning of a behavior (role enactment) matches the meaning of an identity (Stryker and Burke 2000). The ultimate goal of Burke’s ICT is to attempt to explain the internal dynamics of the self as individuals seek to verify the identity that is associated with the roles they enact. Burke’s theory consists of four main elements: (1) identity standard (i.e., criterion for whether or not an identity is verified), (2) inputs (i.e., reflected appraisals regarding an individual’s enactment of an identity), (3) comparison (i.e., comparison between the inputs and the identity standard), and (4) behavior outputs (i.e., behavior based on the congruency between inputs and the identity standard). Burke (1991) argues that when identity standards are achieved, individuals experience positive emotions and will engage in behavior that further forms their commitments to others in their interactions. However, when identity standards are not achieved, individuals experience negative emotions and will attempt to alter their behavior in order to return others’ responses to their enactment of an identity in agreement with the individuals’ identity standards (Burke 1991). A limitation of Burke’s theory is that it does not take into account social identities, which are differentiated from role identities or personal identities (i.e., those tied to institutions like work or family). ICT focuses on roles and whether role performances are reflective of the meanings and expectations associated with that role (Stets and Burke 2000). In identity theory, emphasis is placed on the negotiation of role

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performances in the interactional setting and less attention is given to social identities, which (according to social identity theory) can be claimed and maintained outside of the interactional context (Stets and Burke 2000). “Disabled” is a social identity, meaning that it is defined by “categorical representational meaning systems shared by large segments of society that can provide expected characteristics for those who belong to that category as well as perceptions for their behavior and narrative history of group membership” (Deaux and Martin 2003, p. 105). While social identities are claimed subjectively by those who exhibit characteristics corresponding to that social category, these identities are often objectively ascribed to people who exhibit characteristics of a known social group (Deaux and Martin 2003). Ascription of a social identity is quite likely when individuals display physical characteristics or visual cues as indications of their “belonging” to that group (Waters 1990; Deaux and Martin 2003; Killian and Johnson 2006). This leads to the second limitation of Burke’s theory—it presumes that individuals have a specific established identity that they wish to actively maintain. Although social identities are often ascribed based on physical appearances or other visual cues, individuals who possess these characteristics may wish to disidentify from a given social identity or claim an alternative identity. A small body of literature recognizes people’s identities that develop in opposition to the other; often occurring with stigmatized social identities (McCall 2003; Pyke and Johnson 2003; Killian and Johnson 2006). McCall’s (2003) “not-me identities” are characterized as identities that emerge as reaction against others’ ascriptions of identities on the individual. McCall’s claim has been supported by empirical evidence of individuals who adopt “not-me identities” or “disidentify” from stigmatized social identities (Pyke and Johnson 2003; Killian and Johnson 2006). However, even when individuals wish to either claim or reject a particular social identity and, correspondingly, desire others to accept their identity claims, it is not always possible for these individuals to affectively change how others view them, particularly if markers of one’s membership to a social identity group are visible (Hunt 2003; Killian and Johnson 2006). One way to address the absence of social identities in Burke’s ICT is by integrating the aspects of ICT with components of social identity theory. Deaux and Martin (2003) contend that identities are developed within two types of contexts—broad social categories and the interpersonal network—and it is the interplay of these two contexts that shapes different forms of identities (i.e., role identities and social identities). Thus, individuals’ ability to claim or reject an identity is

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dependent upon the social context, and the degree of support these individuals gain for enacting an identity during social interactions will determine the likelihood of that identity being maintained or abandoned. Furthermore, the social categories may shape or constrain participation in everyday networks, which can have important implications for those who wish to reject particular identities and take on new ones. Finally, Deaux and Martin contend the social categories that individuals identify with often include others with whom one has never met or may never meet. In such cases the enactment of these social categories is largely based on what one gleans from popular discourse and others’ reactions to their enactment of that identity. Taking self-processes and the symbolic interactionist framework into account, we would then contend that impaired individuals develop an identity as disabled depending upon the types of messages they receive from others regarding their self during social interactions, as well as the messages they receive through social discourse regarding impairment and other aspects of their environment (e.g., inaccessible buildings, transportation barriers, social exclusion) that send messages to these individuals regarding their self. In fact, research shows that frequent experiences of social exclusion, discrimination, and physical barriers produce feelings of shame and frustration among people with impairments, sending the message that they do not belong (Morris 1991; Toombs 1995; Reeve 2002). Such experiences also shape how impaired individuals perceive that others view them (Skar 2003; Lobianco and Sheppard-Jones 2007), and affect their likelihood of accepting or rejecting a disabled identity (Reeve 2002; Watson 2002; Skar 2003; LoBianco and Sheppard-Jones 2007). Impaired individuals who experience numerous barriers in society are found to engage in destigmatizing behaviors such as taking on other roles to distract from their impairments (Skar 2003) and to reject their disabled identity by claiming other identities for themselves (Watson 2002). Still, the process of negotiating an identity is highly dependent upon one’s social environment, the people with whom individuals interact, and the degree to which these others produce “spoiled identities” for individuals with impairments (Higgins 1992).7 For those who are physically impaired, their “disability” is often viewed by others as a master status (Fine and Asch 1988; Higgins 1992), or an ascribed social status possessed by an individual that supersedes all other statuses held by that individual during social interactions (Barnartt 2001). However, unlike others master statuses (e.g., race and gender), the “disability” status is more likely to occur later in life; is not always plainly visible; and can vary in terms of its manifestation, both between and within

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individuals (Barnartt 2001). The degree to which a disability is visible and whether a person discloses their disability has important implications for social interactions, as there are shared social norms within society regarding how interactions between disabled and ablebodied others should occur. Thus, disability presupposes how interactions will go (Barnartt 2001). Not all disabled people integrate these negative messages into their self concept. In fact, there are acts of resistance to such integration (Reeve 2002). A common finding in the literature has been that claiming a disabled identity is a fluid process, and it is highly dependent upon one’s social context (Priestley 1999). In some contexts, impaired individuals may be better able to reject their disabled identity and claim other identities that are more meaningful to their sense of self. Individuals must evaluate the costs and benefits that result from claiming a disabled identity within their current social context (Priestley 1999; Reeve 2002). If maintaining identities that run counter to their disabled identity becomes too exhaustive, individuals may end up relinquishing those identities (Charmaz 1995). Here it is also important to consider individuals’ reference groups; that is, whose perceptions the individual considers most meaningful (Rosenberg 1981; Frank 1988). Finally, one must also recognize that although society may ultimately view disability as a master status (Fine and Asch 1988; Higgins 1992; Barnartt 2001) when considering identity formation, individuals’ additional social statuses must also be considered, as these social statuses could potentially have an effect on disabled identity claims. Individuals’ experiences of impairment may be shaped by their privileged or subordinated status as a result of their race, gender, age, and social class. These experiences may be shaped not only by one's particular social statuses, but also by the salience of these statuses, as this could affect individuals’ sense of self and shape how they cope and identify with their impairment. Social status is argued to play an important role in individuals’ identity claims (Waters 1990; Hunt 2003; Killian and Johnson 2006). Two particular studies demonstrated how social status provides advantages to some groups in disidentifying from stigmatized identities. In one of these studies on North African people who immigrated to France and who sought to reject an immigrant identity (an identity that is highly stigmatized; Killian and Johnson 2006), some women were able to draw on resources gained through education and social class to shape others’ perceptions of them. Conversely, Waters (1990) found that West Indian immigrants in the United States sought to verify their immigrant identity as a method of distancing themselves from the stigmatization of being seen as

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American blacks, and West Indians of a higher social class status were better able to do so than their lower-class peers. Thus, social statuses have important implications for whether impaired individuals claim or reject a disabled identity. Social Statuses, Inequality, and Disability

The relationship between impairment and social statuses has been largely missing from models of disablement, and disability research has faced criticism for treating disabled people as a homogenous group (Morris 1991; Shakespeare 1996; Vernon 1998, 1999; Hughes 2004). Advocates argue that people with impairments experience varying degrees of oppression beyond their type of and degree of impairment, and the socially constructed barriers in society, as a result of their stratified social positions, such as gender, race, social class, and age (Morris 1991; Vernon 1998, 1999; Hughes 2004). Black feminist theorists have long contended that social statuses such as race, class, and gender are constructed within larger macro-level systems of racism, patriarchy, and capitalism, which constitute what is referred to as “interlocking structures of oppression” (Collins 1993). These systems of oppression shape our daily interactions and, subsequently, the development of our self-concept. However, while it is argued that one’s race, class, and gender are always present and active in any given social interaction (Collins 1993), their prominence may be situational, and any particular social status may be more salient in a given situation (King 1988). Not all statuses may be equally visible and/or important in terms of individuals’ self-concepts (Collins 1993). Furthermore, theorists argue that the impact of any given status on individuals’ life experiences varies depending on the situation being examined and the reference group to whom these individuals are being compared (King 1988; Collins 1993). In other words, social statuses are dynamic, and the salience of a particular status is largely shaped by the specific social context and the social issue under consideration. In terms of disablement, one’s social statuses are embedded within systems of domination and subordination that shape their opportunity structures and their access to resources (Collins 1993). In the disability literature, some researchers contend it is necessary to examine the interaction of disability and other social statuses to understand the diversity of experiences (Hanna and Rogovsky 1991; Stuart 1992). These researchers argue that impaired individuals who possess other devalued statuses, such as being female or a minority race, experience simultaneous oppressions as a result of disablism, racism, and sexism.

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However theorists disagree on how the interaction of race and disability should be examined. For example, Stuart (1992) contends that in order to examine the unique experiences of black disabled people, we need to examine the simultaneous oppressions this group faces. Other researchers contend that the use of the term “simultaneous oppression” to describe black disabled people’s experiences is overly simplistic (Vernon 1999) and does not fully capture the experiences among these individuals who experience oppression singularly, multiply, and simultaneously (Vernon 1998). Despite the theoretical contribution of these critiques toward disability studies, there continues to be a lack of strong empirical evidence to support these claims (Oliver 1990; McDonald et al. 2007). Research has increasingly examined the experiences of disability from a single standpoint, such as the experience of being male and disabled (Charmaz 1994, 1995; Gerschick and Miller 1995; Valentine 1999), female and disabled (Thomas 1997; Dyck 1999; Zitzelsberger 2005), black, female, and disabled (Petersen 2006) or black, male, and disabled (Devlieger et al. 2007; Ostrander 2008). However, very few studies make comparisons among people in different social locations (Hanna and Rogovsky 1991; Charmaz 1994; Miner 1997; Bender 2006; McDonald et al. 2007). Below we briefly outline findings in the literature regarding the relationship between impairment and gender, race, social class, and age. Gender

Studies on gender and disability tend to focus on two relationships between gender and disablement: (1) the ability of disabled person to enact gender roles, and (2) the role of gender in the disablement process. First, it is argued that impairment differentially affects men’s and women’s ability to enact gender. For men, impairment runs counter to hegemonic masculinity—such as being strong, athletic, physically fit, youthful, independent, self-reliant, and rational (Morris 1991; Valentine 1999; Gerschick 2000; Robertson 2004)—whereas impaired women face the convergence of two devalued statuses (Hanna and Rogovsky 1991; Gerschick 2000). However, some argue that impaired women are also denied traditional female roles, as they are stereotyped as lacking resources necessary to be a suitable partner, a mother, or to achieve female beauty ideals (Oliver 1990; Hanna and Rogovsky 1991; Asch and Fine 1992; Gill 1996; Thomas 1997; Vernon 1999; Sheldon 2004; Zitzelsberger 2005).

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Studies suggest that impaired men face a greater risk of identity loss regarding their gendered identities relative to women (Charmaz 1994; Miner 1997). Numerous studies have found that during instances when impairments prevent men from enacting their masculine identities, they are likely to experience an identity crisis (Gerschick and Miller 1995; Valentine 1999). Men are also found to engage in various behaviors to reclaim or renegotiate their masculine identities (Charmaz 1994; Gerschick and Miller 1995) and are more likely to try to disguise their impairments in order to put forth a public persona of someone who is independent and strong (Charmaz 1994). Doing so allows men to reclaim their masculine identities either by engaging in past behaviors that marked their masculinity or by creating alternative masculine identities for themselves (Gerschick and Miller 1995). Women, on the other hand, are found to be more resilient than men in terms of adopting new identities when their gendered identities are threatened by impairment (Charmaz 1994; Miner 1997) and, unlike men, are less likely to try to recapture their former selves. Based on these findings, it is possible to hypothesize that men might be less likely than women to claim a disabled identity, particularly when faced with threats to their gender identity. Second, gender has been found to have implications for the disablement process. Empirical studies have shown that disabled women are more likely to be socially isolated than are disabled men. For example, disabled women are less likely to marry, more likely to divorce, and less likely to have children (Hanna and Rogovsky 1991; Bureau of Labor Statistics 2009). Additionally, women are less likely to have access to resources than men as they are less likely to have a high school education (Hanna and Rogovsky 1991), less likely to be college educated (Fine and Asch 1992), and (when employed) earn significantly less money than disabled men (Hanna and Rogovsky 1991; Boeltzig et al. 2009; Doren et al. 2011). Therefore, in terms of accessing financial resources, women may have more to gain from claiming a disabled identity than do men. At the same time women may be less inclined to identify as disabled as they may view it as having negative ramifications on their ability to enact their gender. It is difficult to understand precisely how gender impacts the disablement process as the majority of studies examine the relationship of gender and disablement from the perspective of a single gender, or reference comparisons between genders only occur in passing without looking at systematic differences between the two (Charmaz 1994, 1995; Gerschick and Miller 1995; Thomas 1997; Dyck 1999; Valentine 1999; Zitzelsberger 2005). Additionally, very few of these studies use

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nationally representative samples, making it difficult to make broader generalizations from the data. Regardless, even with such limitations, the empirical evidence makes a strong case for the inclusion of gender in studies of claiming or rejecting an identity as disabled. Race

In addition to gender, some disability researchers contend that experiences of disablement are also affected by one’s race (Stuart 1992; Vernon 1999), with almost all research focusing on the minority group black/African Americans. As a result of experiences with both disablism and racism, black disabled individuals are argued to have limited access to resources and to be isolated from their communities and families, subsequently to have limited or no ability to form an identity as a black disabled person (as they are excluded from both disability politics and from the black community; Stuart 1992). However, as with gender only a few studies have made direct comparisons between races when examining the effect of race on the disablement process (Bender 2006; McDonald et al. 2007). Instead, studies often focus on single standpoints, such as being a black male (Devlieger et al. 2007; Ostrander 2008) or black female (Petersen 2006) and disabled. The limited research that has been done collectively suggests that race may not have as significant of an impact on individuals’ disability experiences as does gender (Bender 2006; Devlieger et al. 2007; McDonald et al. 2007; Ostrander 2008). Studies that have examined race and disability often find that respondents’ gender identities play a much more salient role in their conceptualization of self as disabled than do their racial identities (Bender 2006; Devlieger et al. 2007; McDonald et al. 2007; Ostrander 2008). In a study of black men who were paralyzed as the result of gunshot wounds, Ostrander (2008) found identity dilemmas similar to those cited in previous research on masculinity and disability. The men in Ostrander’s study discussed experiences of diminished masculinity as a result of their impairment, as they were no longer able to enact behavior that was symbolic of masculinity within their social contexts, such as walking with a swagger, standing tall, having impromptu sexual relations, and being in physical fights. However, the men in this study did not feel that their impairment challenged their racial identities, and in fact, a couple of respondents commented that it was almost “normal” to be black and disabled because it was seen as a normative outcome of gang-related activity. Nevertheless, these men did express concern over others’ reactions toward their impairments and also discussed concerns

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for their own safety as they were returning to violent neighborhoods unable to physically protect themselves. In another study of black males who became impaired as a result of violence, men in the study experienced dramatic changes in their social relationships as a result of their impairment, including loss of family support, loss of friends who were in gangs, and the formation of new friendships during rehabilitation (Devlieger et al. 2007). Although these findings provide insight into black males’ experiences, particularly those who become impaired as a result of violence, the study contains very little discussion of how race shapes these men’s disablement process. Furthermore, without the use a comparison group, it is difficult to know the extent to which the experiences of these men were shaped by their race beyond the social contexts (i.e., inner city neighborhoods and gang participation) in which their lives were embedded. However, such comparisons were made in a study of ten white men and ten black men with physical impairments (Bender 2006). Here Bender found masculinity to be a more salient identity following impairment than was race. In general, Bender found more similarities than differences in how these men constructed their understanding of self as disabled, and their views of how this status (i.e., disabled) constrained their participation in society. Both black and white men reported feeling constrained within a structural context of ability, in which their access to employment, the built environment, and marriage was limited. Furthermore, these men discussed having to forgo traditional social expectations of masculinity within these three contexts as a result of their impairment, which in turn led to feelings of emasculation. Finally, research on adults with learning disabilities found mixed results when it came to the effect of race on disability experiences (McDonald et al. 2007). Certain respondents in this study felt their impairment was accepted within their racial/ethnic communities and did not further isolate them from social interaction; yet others contended that they were further disabled when interacting with non-disabled others within their racial/ethnic communities as a result of stigma attached to their impairments. As with other studies, marked differences were found in the effect of gender on disablement experiences. Men in this study felt that their impairment prevented them from fulfilling traditional masculine roles, whereas women reported receiving pity from others more often than men. Surprisingly, unlike in other studies (Oliver 1990; Hanna and Rogovsky 1991; Asch and Fine 1992; Gill 1996; Thomas 1997; Vernon 1999; Sheldon 2004; Zitzelsberger 2005), these women did not receive messages that they should not partner and/or become mothers. While the results of this and other studies regarding

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race and disablement experiences are limited, they do raise further questions as to what precise effects race/ethnicity has on disability and identifying as such. Age

Age is a social status that should have a significant impact on the disablement process, particularly in conjunction with timing of the onset of impairment. Experiences with disablement vary greatly across the life course and have different meanings for impaired individuals’ lives. Having bodily imperfections is viewed as more problematic during childhood and young adulthood, a time when being physically fit and healthy is valued and the norm—and particularly for young adults who are seen as necessary for labor force participation and reproduction (Macfarlane 1994; Priestley 2004). Furthermore, it is argued that older adults are less likely to be perceived as disabled than are younger adults, as impairment is seen a normative part of aging (Priestley 2004). It is difficult to find studies that examine experiences of disablement (and the construction of a disabled identity) across the life course. Among the research that has been conducted, some findings suggest that individuals’ experiences of impairment may be different depending on where they are in their life course. Earlier in life, experiences with impairment can shape life course trajectories for young adults. For example, disabled young adults with early onset of impairment are less likely to be employed than those who experience late onset of impairment; a finding the authors partially attribute to the increased likelihood of finishing high school among adults with late-onset impairment (Loprest and Maag 2003). Furthermore, it is argued that barriers to participation in normative age-graded events such as marriage, parenting, and employment denies impaired individuals the premise for building adult identities (Priestley 2004). While older adults make up a large proportion of mobility-impaired individuals, they are rarely viewed as “disabled” (Townsend 1981), as impairment is often seen as a normative aspect of aging (Priestley 2000). The belief that impairment is normative in old age may have important implications for identification as disabled among older adults. Individuals who experience the onset of impairment later in life may be less likely to develop an identity as disabled (Zink 1992; Langlois et al. 1996). Using a convenience sample of adults aged 65 years and over, Langlois and colleagues (1996) found that 21% of older adults who did not perceive themselves to be disabled were unable to perform at least

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one activity of daily living (ADL), while 40% had difficulty with performing at least one ADL. Older adults who are impaired also have to contend with ageism, which may impact their experiences of disablement. For example, older adults who are impaired are often denied independence and are likely to experience more social barriers, for example, in the form of unsolicited help from others (Zarb 1993; Zarb and Oliver 1993). Ultimately, experiences such as these may shape their identification as disabled. Findings from one study (Kelley-Moore et al. 2006) indicate that the disablement process among older adults may be similar to that of other age groups. Increased impairment, receiving home health care, and stopping driving all increase the likelihood that older adults identify as disabled (Kelley-Moore et al. 2006). Conversely, having social support and satisfaction with one’s level of social activities both decreased the likelihood that older adults identified as disabled. Although these findings are enlightening, they are limited in that this study does not compare the disablement experiences of the older adult to those of younger age groups, and therefore it is difficult to draw conclusions regarding precisely how the disablement process is affected by age. Social Class

Social class is also argued to have a significant impact on the disablement process; however, it is the least examined social status regarding disability and the disablement process. Shakespeare (1996) argued that social class shapes experiences of impairment and the degree of exposure to oppressive social relations. Although not as extensively researched as sex, race/ethnicity, and age, social class may have significant implications for experiences of impairment, as an individual’s class may determine the amount of resources to which one has access, the types of physical and social barriers they face, and the amount of healthcare they receive. Although traditionally overlooked in disability studies (Shakespeare 1996), ignoring this status in studies on disability may prevent researchers from gaining a richer understanding of the disablement process. Despite a number of theoretical and conceptual claims that the experiences of disablement are shaped by larger structural systems such as racism and sexism, there are limited empirical studies that provide evidence to support this claim. The relationship of age and social class to the formation or rejection of a disabled identity has received rather little attention. However, research conducted has shown that gender may operate in distinct ways to shape and mold the disablement experiences

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for men and women, and one’s gender may be more salient in shaping disability experiences relative to the social status of race. With few empirical studies giving attention to these social statuses, there is still much room for future studies to provide an understanding on this matter. Modeling Disability Identity Construction

As an identity, “disabled” is constructed based on complex relationships between biology, society, and the individual (Shakespeare 1996). Thus, understanding precisely what factors influence impaired individuals to either claim or reject a disabled identity is a first step. However, to create a model we are also charged with identifying how exactly these factors relate to identity. In order to do so, researchers of disability have drawn from a variety of theoretical perspectives; each of which can be applied in some manner to improve our understanding of how a disabled identity is developed. These various perspectives have been discussed above, and include the tenets detailed in the medical and social models of disability, the consideration of various self-processes, and the recognition of the inequalities and differences in individuals’ experiences that are created by various social statuses. While each of these perspectives offers something unique to understanding disabled identities, it is only by integrating these into a more expansive model that we expect to gain a more complete understanding of the development of disabled identities. The result is a conceptual model that we use to guide the proceeding empirical analyses (Figure 2.3). Both the medical and social models of disability present valid strengths. However, as their previous criticisms acknowledge, none of these individual models is completely representative of impaired individuals’ experiences. Thus, rather than assessing disability as explicitly indicated in either a medical- or social-model approach, we begin by including components of both in our model. Here we argue that both bodily factors such as level of functionality, and physical and social barriers have unique and direct affects on identity claims as disabled. Drawing on self theories, we expect that a direct relationship will also exist between self-processes and disabled identities. At the same time, these self-processes are themselves a result of interactions with others in specific societal contexts. As shown earlier, impairment can influence self-processes by shaping the manner in which individuals themselves interact with others and the manners through which these others approach interactions with these individuals. On the other hand, the specific social context can also introduce physical and social barriers that cause individuals to experience situations, which can influence

Soc i • G al Stat e • Ra nder uses: • So ce • A cial cla ge ss Mobility Impairments: • Severity of mobility difficulty • ADL/IADL limitations • Reliance on assistive devices

Self Processes: • Social comparisons • Self-presentations • Reflected appraisals

Environmental Barriers: • Physical barriers in home, community, work, and transportation • Social barriers (stigma, discrimination, and social exclusion)

Disabled Identity

ridolf-p38_Layout 1 11/13/12 3:47 PM Page 1

Figure 2.3 Conceptual Model for the Development of a Disabled Identity

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individuals’ self-processes. Therefore, we also recognize that, in addition to the direct relationships between impairment, environmental barriers, and self-processes on disabled identities, impairment and environmental barriers also have a direct effect on self-processes. Furthermore, we expect self-processes to partially mediate the relationship between impairment and environmental barriers and identity claims as disabled. That is, we anticipate that not only will direct relationships exist between impairment and identity claims, and environmental barriers and identity claims, but that a portion of the total effect of impairment and environmental barriers on identity claims will occur through the individuals’ self-processes. The relationships between impairments, barriers, and self-processes with disabled identities are at the heart of our conceptual model. However, to account for the potential inequalities faced by an individual, we also consider additional social statuses, in particular race, gender, age, and social class. These social statuses may collectively influence individuals’ experiences in a manner that is unique to their own personal statuses. However, for each individual these social statuses together help create a context in which the other components of our conceptual model are located. The result is a model that accounts for the major tenets put forth by the medical and social models of disability, theories of self-processes, and inequalities resulting from differing social statuses, and is used to guide our mixed method data analyses. By examining the construction of a disabled identity using this conceptual model, we believe a more nuanced picture of impaired peoples’ experiences, and how they come to self-identify as disabled or ablebodied, may be provided. Notes 1. We do not provide a complete or comprehensive overview and comparison of these various medical models of disability; however, readers interested in such an overview can refer to Altman (2001). 2. Proponents of the social model of disability contend that this model is not a theory and cannot serve as such, nor was it intended to capture all aspects of the disablement process. Rather, these proponents argue that the social model’s purpose was to serve as a mechanism for collective action and to empower impaired individuals to challenge socially constructed barriers that disable them (Oliver 1996). 3. This model was initially referred to as the International Classification of Impairment, Disability, and Handicap-2 (ICIDH-2) but later renamed by the WHO as the International Classification of Functionality, Disability, and Health (ICF).

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4. Mead (1934) defined the generalized other as an individual’s perception of the attitudes of the community as a whole toward him/her. 5. In other writing Rosenberg (1986) refers to actual appraisals as “direct reflections.” In our book we use the term actual appraisals. 6. Elsewhere, Rosenberg (1986) also refers to these perceived appraisals, or reflected appraisals, as “perceived selves.” Thus, perceived appraisals, reflected appraisals, and perceived selves all refer to the same concept. Throughout our book, for sake of consistency we refer to this component with the term reflected appraisals. 7. Spoiled identities occur when individuals possess undesirable characteristics, such as impairments, which lead to stigmatizing and thus spoil or discredit their otherwise “normal” identity (Goffman 1963).

3 Everyday Experiences of the Body and the Environment

Although the role of environmental barriers has long been recognized by disability advocates as an important component of the disablement process, only in the past decade has research begun to give increased attention to this issue. At the individual level, physical barriers in the built environment and social barriers (such as stigma and discrimination) that are fostered through interaction limit impaired individuals’ ability to fully participate in society. In addition to experiences with physical and social barriers, impaired individuals must also contend with the daily symptoms of their impairment. As we have recognized, how a person makes meaning out of these experiences is likely to have a significant impact on their identity claims as disabled. Thus, these factors play a central role in our conceptual model of disabled identities. The acknowledgement of these variables by researchers is clearly important, yet viewing both barriers and impairment in the context of such a conceptual model may fail to provide a real-life picture of the difficulties and challenges faced by individuals with mobility impairments. The detail of these challenges and the various processes that individuals use to cope with them may be lost in translation by researchers who approach their research with a strict and unwavering analytic goal. Thus, before we seek to understand how barriers and impairments directly relate to one’s acceptance or rejection of a disabled identity, we first seek a deeper and more detailed comprehension of how environmental barriers and symptoms of impairment are managed on a daily basis by individuals with mobility impairments. We are able to gain such perspective through the words of these impaired individuals themselves, as we draw from the narratives they provided during the thirty in-depth interviews we conducted as part of our mixed methods study. Even more than twenty years after the Americans with 41

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Disabilities Act of 1990 (ADA) was passed, we still find physical and social barriers faced by impaired individuals are abundant, and many of the challenges for impaired individuals that the ADA sought to ameliorate remain. Barriers in the Home

The individuals in our study all resided in the metropolitan area of a major southern U.S. city. The majority lived within walking distance of public transportation. Eight of the thirty respondents interviewed lived in a single family home, one lived in a townhouse; and the remaining twenty-one lived in apartments or condominiums. The vast majority of respondents did not own their homes and, therefore, relied on landlords and apartment-management staff to handle any modifications to their home or living quarters needed or requested. In most cases, the respondents’ homes were older and needed to be retrofitted to make them more accessible for the individual.1 In fact, only two of the thirty respondents interviewed lived in homes that were designed for people with disabilities. Many respondents we interviewed reported either receiving help from others when performing tasks around the home or having features in their home that made it more accessible, including street-level entrances, accessible parking and/or drop-off sites, ramps, railings, automatic doors, elevators, bathroom modifications (e.g., grab bars, raised toilet seats, adjustable showerheads), and kitchen modifications. However, the respondents we interviewed also discussed a number of physical barriers in their homes that limited their ability to move freely and independently while at home, increased the symptoms of their impairment (e.g., pain and fatigue), and in some cases even limited their ability to participate in their communities. The most common problems respondents experienced within their homes were difficulty in gaining entry to their residences and difficulty accessing the bathroom, followed by difficulty accessing the kitchen and using interior stairs and doorways within their homes. Difficulty gaining entry to the home was the most common problem cited by respondents, largely because the majority of respondents encountered steps when entering their homes. Although about one-third of these respondents lived in either single-story houses or apartments located on the first floor of apartment buildings, they still often had to contend with steps. Respondents who lived in single-family homes typically encountered a single set of steps when entering the main door to their residence. However, this was even more problematic for the

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several other respondents who lived in apartment buildings as they encountered two or more sets of steps or stairs—the first being an exterior set to enter the apartment building and the second being stairs located in the interior of their building that led to their individual apartment unit. Climbing stairs was often quite difficult for these respondents and exacerbated their experiences of pain and fatigue. In addition, in some cases the steps or stairs leading into the home prevented certain respondents from using much-needed mobility aids, such as scooters and wheelchairs. For example, Gayle,2 a 57-year-old woman who had her knee replaced and has been diagnosed with a number of chronic diseases, used a motorized scooter to move around inside her apartment. However, with no ramps on the exterior of her building, she could not take the scooter outside her home. This issue not only affected Gayle’s mobility in terms of getting into and out of her apartment, but also greatly affected her ability to be mobile in the community. To accommodate for the steps and stairs leading into their homes, respondents were forced to use a number of tactics during entry and exit, including bracing themselves against the wall, leaning against railings as they climbed steps, and stopping to rest as they ascended. Olivia, a 59year-old woman who has degenerative arthritis and a bulging disk in her back, provided a detailed example of the difficulty such respondents experienced when climbing the steps to their homes and how they dealt with such physical barriers. She lives in an apartment building and encounters multiple sets of steps before reaching her apartment. Furthermore, none of these steps leading to her apartment had railings. When Olivia first moved into her building, she tried to circumvent these steps altogether by using a specific entrance to the apartment building that had a ramp. However, when this strategy was brought to her landlord’s attention, he subsequently instructed her that she was no longer allowed to use the entrance with the ramp, as this entryway was for emergencies only. As a result, her only option was to use the entrance with steps, and she had to learn how to accommodate: What I do is sometimes, depends on how I feel, I lean on the side of the wall and then go up. Or if I don’t have any bags, I hold onto the wall like this [demonstrates] and go up. It’s about four steps into the building. Two on the front, and once you come in it’s about four in order to go to my apartment…

Olivia, like many other respondents, had to learn a strategy that she could use in order to successfully deal with her difficulty in using the

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steps leading to her home, as her landlord made it clear there is no other alternative available. Steps and stairs leading to one’s home was not the only home barrier faced by respondents. Many also reported having difficulty with the exterior doors leading to their house or apartment building. The most common problem respondents had with these exterior doors was that they were heavy and/or had to be opened manually. This made it difficult for respondents to open and close these doors, and as a result made it difficult to access their home or apartment building. This issue was particularly problematic for individuals who relied on mobility aids such as canes, walkers, and wheelchairs. In these instances, respondents had such difficulty opening and closing exterior doors to their home that they had to abandon these mobility devices simply in order to pass through the doors. Derek, a 38-year-old man who suffers from neuropathy in his legs and often uses a wheelchair outside the home, describes such an experience: There is a slight difference when I use the wheelchair when I'm exiting my front door, just, uh, pulling it but fortunately I am able to get up and do it... Sometimes I try to navigate it by sticking my fingers through and just [demonstrates a pulling motion], you know, getting a little momentum and getting it shut. But most times I have to pull the chair out, get up, and go back around, pull the door shut.

Difficulty entering and exiting the home was not the only difficulty that could stem from this barrier, but other routine tasks such as grocery shopping and running errands also became problematic for respondents. Shawn, a 45-year-old paraplegic who relies on a wheelchair for mobility, described the difficulty he experiences on return trips from the grocery store: …The back door is manual so I have to pull my keycard out and wait for the little noise and then open it up…If I have bags it’s complicated because my bags will fall over. I have spilled them before.

In addition to increasing the difficulty of everyday tasks, hard-toopen doors also increased the vulnerability of these individuals. Marcus, a 49-year-old man who fractured his kneecap eight months prior to the interview, describes how this barrier has increased his sense of vulnerability in his neighborhood: I have to set the cane aside, usually as a precaution; and I mean it’s a lovely neighborhood…but still you approach the door, it’s good to

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have your keys in your hand when you get to your door. That’s the easiest way to get robbed or somebody to get—be in a bad situation when you’re at the door fumbling with your keys. So I’m using the cane, jiggling the key, or…I set the cane aside, then try to keep the weight off of my knee…particularly if I’ve been to the grocery store or the cleaners… And you’re just like, it’s a juggling act.

Such difficulty with steps, stairs, and hard-to-open doors was so fatiguing for some respondents that they had to limit the number of times a day or week they left their homes, affecting the amount of time spent outside the home and in their communities. For certain respondents, this also meant relying on others to help them with errands that were performed outside of the home. In addition to the barriers faced while entering and exiting one’s residence, a number of barriers also existed within interviewees' homes as well. The second-most-common problem the respondents we interviewed reported was barriers in the bathroom. In most cases, this specifically involved difficulty accessing the toilet and bathtub. A number of respondents reported difficulty using the toilet in their homes due to the fact that the toilet was too low and/or was not accompanied by the proper devices needed to assist them in lowering themselves onto the toilet and raising themselves back up off it. These respondents reported this difficulty as ranging from “a little inconvenient” to very difficult. The difficulties experienced by respondents when using the toilet could be moderated with the installation of raised toilets and handrails around the toilet area. But many of the respondents we interviewed did not own their own homes. Some of them were residing in low-income housing and did not feel empowered to make or request modifications to the existing structure of the bathroom, even when such modifications were nothing more than having a grab bar installed on the wall next to the toilet. As a consequence, one respondent reported receiving help from family members and a nursing aide when using the toilet in her home. However, this was not the norm, and most of the interviewees who had difficulty with this task (and who did not have the appropriate modifications in their bathroom) found ways to accommodate by using other objects for stability when using the toilet. These objects may have been items such as their mobility aids, or other permanent structures in the bathroom such as the bathtub or the bathroom sink. In many cases, respondents found these accommodations effective in lieu of structural modifications to the bathroom. However, such accommodations can potentially be dangerous as they were not designed for providing

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assistance when getting on and off the toilet. Donna, a 54-year-old woman with multiple debilitating conditions and injuries who has no grab bars in her home’s bathroom, describes a recent experience in which her self-accommodation led to significant damage to her home, but luckily did not cause harm to herself: …Trying to get up from the toilet to the sink, I pulled one sink off the wall and the water—WHOOSH! Had to get an emergency plumber to come. So when he came he put a cabinet; he put a new sink, a new wall, the whole thing, and put a cabinet in, but still when I raise up I have to put one hand on the tub and lightly pull up on the sink. Not pull up, but just balance myself and put my weight on the tub and stand up… I need something to pull up on.

What is striking about Donna’s example is that even after this event, and the evident need for either handrails or a grab bar around her toilet, she still has no modifications in her home to help with using the toilet. As a result, she continues to risk damaging her home and, even worse, injuring herself, every time she uses her toilet. For many of the respondents we interviewed, bathing was also a difficult process. These individuals experienced balance issues, a limited range of motion in their legs, a lack of strength in their upper and lower bodies, and/or the inability to stand. As a result of these mobility limitations, these individuals experienced two main problems when it came to bathing: (1) difficulty stepping over the side of bathtubs in order to shower or bathe, and (2) difficulty lowering themselves into the bathtub and getting out again. Although in some cases these problems were alleviated with the installation of grab bars and nonslip surfaces in the shower area and the use of shower chairs and adjustable showerheads, some respondents simply did not have the means to acquire these features. In these cases, some respondents relied on the help of others when it came to bathing. However, most found ways to self-accommodate (similar to when using the toilet), such as holding onto walls, sinks, and towel bars to brace themselves as they stepped into and out of the bathtub or simply sitting on the side of the bathtub to bathe rather than standing in the shower or lowering oneself into the tub. Phyllis, a 60-year-old woman who suffers from multiple conditions, describes here how she self-accommodates when using the bathtub in her home: I hold onto the towel bar that’s on this wall, and I’ll reach over and hold onto the sink. And I’ll put my left leg in the tub first, and then I

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just sit on the side of the tub or sit in the shower chair and wash myself up.

In fact, several respondents reported sitting on the side of the tub to bathe as it was too difficult to stand in the shower, or to lower themselves into the tub. While often these respondents reported that they prefer bathing in the tub to showering and/or have been advised by their doctor to take baths to alleviate the pain or discomfort they feel, they had to stop doing so out of a fear of slipping in the tub. When asked to describe how she bathes, Olivia stated the following: I usually sit on the side of it. It’s an old bathtub. I mean old! So I usually sit on the side to clean the bottom part of my body and sometimes the top part too. ‘Cause I’ve tried—I’ve gotten in it and then I couldn’t get out of it. It’s a struggle to get up, I mean a real struggle to get up out of it and I have slipped a couple times.

Regardless of the increased likelihood of injury, a few respondents reported that they continue to take baths at the risk of slipping when getting into and out of the bathtub. In fact, Marcus has fallen on more than one occasion when using the bathroom in his home: I have fallen once or twice. Getting in [the shower] one time, and the one time I was hobbling to the bathroom and fell into the shower. I was like I got to catch my balance and then ‘BOOM.’ Yeah, right on the back of my head…I think I was out for about a minute or two.

Having handrails or grab bars, not only in the shower area or around the toilet, but also in the bathroom in general, could reduce the difficulties these respondents face when using the bathroom. Following barriers in the bathroom, barriers in the kitchen were another common type of barrier respondents faced in their homes. The most prevalent problem experienced in the kitchen was reaching items in cabinets. A few respondents reported difficulty reaching cabinets low to the ground as this forced them to bend over; a movement that was hard for them. However, most often the respondents we interviewed reported not being able to reach high cabinets, as this presented a range of difficulties. While some could not reach the highest cabinets in their home (for example, the cabinets above the stove or above the refrigerator), others reported more significant accessibility issues where even the first or second shelf of their upper cabinets could not be reached. In the case of respondents who used a wheelchair, their kitchen cabinets were simply too high to access from a seated position.

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Only two respondents out of the sample reported having kitchen modifications. Gayle, a 57-year-old woman who uses a motorized scooter in her home, indicated that the door to her kitchen was widened to accommodate her scooter. Similarly, Nicole, a 48-year-old woman who also used a wheelchair in the home, indicated that her kitchen was widened to accommodate her wheelchair, her kitchen cabinets and sink were lowered, and a support was added to the kitchen sink to assist her when doing the dishes. Most respondents we interviewed did need some modifications to their kitchen area, but did not have the means to acquire them. Just as with barriers in the bathroom, respondents found methods of accommodation for these barriers in the kitchen. Several respondents reported that they use reaching devices or rely on the help of others to retrieve items from their kitchen cabinets. Some simply did not store items in cabinets that were inaccessible. Respondents also engaged in methods to reach their kitchen cabinets that were potentially hazardous to their well-being, including climbing on counters, standing on stools or chairs, and stretching and standing on their toes. For example, Desmond, a 54-year-old man who has limited use of the left-side of his body due to a stroke, must stand up from his wheelchair to reach into the cabinets in his kitchen. While he is able to stand for up to approximately 30 minutes at a time, he begins to feel fatigued as soon as he starts standing, and he has fallen on several occasions when trying to reach the higher cabinets in his kitchen. Just as kitchen cabinets were too high to reach for some respondents, the height of kitchen counters and appliances also had an impact on the ability of a few respondents to safely prepare meals from a seated position. For example, Shawn accesses his kitchen using his wheelchair, but he cannot see into his pots while cooking because of the height of the stove. Instead, he must remove the pots from the stove to monitor his food as it cooks. This is not only burdensome on Shawn, but also places him at risk of suffering burns. While Shawn and others are able to access their kitchens using their mobility aids, some respondents we interviewed are unable to do so as a result of narrow doorways and limited space in the kitchen. For some of these respondents, this meant abandoning their mobility aids to prepare meals. While this option was a viable one for these respondents, it created a problematic situation as they lacked the ability to stand for any extended period of time and had to learn ways to adapt to these barriers. Such adaptation included having to stop and rest frequently or using a chair while cooking or doing dishes. For example, Olivia cannot stand at the sink and wash her dishes, and instead sits in a kitchen chair. She states: “I have to sit in chair and wash the dishes. Because my back—if I

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stand too long my back hurts a lot. So I usually get a chair and wash the dishes.” Still, leaving behind one’s mobility device was not an option for all respondents, and in these instances entering a space without their mobility aid simply was not an option. These respondents had to forgo preparing meals in their kitchens altogether and instead relied on others to prepare their meals or purchase their meals from takeout restaurants or businesses. In addition to having difficulty entering their kitchen areas when using mobility aids, a few of the respondents we interviewed also mentioned difficulty moving through other interior doorways in their homes. For a couple of these respondents, this made access to particular rooms in the home difficult or impossible unless they abandoned their mobility aids. For example, the bathroom door is so narrow in Desmond’s home that he cannot access his bathroom using his wheelchair. Instead, each time he has to use the bathroom, he must stand up from his wheelchair and walk into the bathroom. This is a very challenging task for him as he has limited strength and mobility in the left side of his body resulting from a stroke. As mentioned above, he has also fallen several times when standing up from his wheelchair to perform tasks that are not possible to do from a seated position. Nonetheless, standing up and walking the distance from the doorway to the toilet or shower is his only option for using the bathroom facilities in his own home. Some respondents who live in single-family homes with multiple stories reported significant challenges when it came to accessing the different levels of their home. For some of these respondents, climbing stairs can be both painful and fatiguing, while others simply can no longer use stairs and subsequently no longer access the basement and second floor of their homes. Some respondents are able to accommodate by confining their living space to the first floor of the home or by relying on the help of others to retrieve items from other levels of the home. But for other respondents, this was not an option. This was the case for Donna, whose bedroom and only bathroom are located on the second floor of her home. She has so much difficulty climbing the stairs to the second floor of her home that she must crawl up the stairs on all four limbs: It’s thirteen stairs from the first floor to the second floor. Thirteen and a landing. Landing at the bottom and the top, so it’s really fifteen steps going upstairs, which I mount leg-leg, leg-leg, hand-hand. I go up the steps crawl-like.

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These barriers in the home caused almost all of the respondents we interviewed to have significant difficulty with or to be completely unable to perform activities of daily living such as bathing, preparing meals, and doing other household chores, such as laundry. Barriers in the home, such as stairs and a lack of railings, meant some respondents were confined to certain areas of the home. Many respondents had adapted to these barriers through the use of a variety of creative methods. However, these adaptation strategies may often have put these individuals at risk for both minor and severe injuries. Still, in some cases, adapting was not possible, and these individuals were simply unable to live independently in their own home. Furthermore, in addition to creating difficulties in accessing one’s home or different areas within one’s home, these barriers also limited some respondents from participating in their communities—particularly those making it difficult to enter and exit residences. Barriers in the Community

While barriers inside the home may have been those most frequently faced by respondents, once outside the home these respondents experienced a number of barriers in the natural and built environment that limited their ability to fully participate in society. While most respondents reported increased accessibility to buildings and the outdoor built environment in recent years, many could still easily provide numerous examples of recent difficulties they have had with both accessing buildings and maneuvering around the natural and built environment in their communities. Accessibility problems did not just result from the physical barriers in their communities, but also from social barriers, such as stigma and strained interactions with able-bodied others who lacked sensitivity and patience for those with mobility impairments. As in their home, respondents had difficulty opening and closing doors when accessing buildings in the community. Again, this difficulty was often attributed to heavy, manual doors. For some respondents, difficulty opening and closing doors was more than just an inconvenience and could be potentially dangerous. Dina, a 43-year-old woman who walks with a cane and leg braces, has become stuck in doorways when doors closed faster than she could move through them. Here she describes her experiences with these types of doors: I find a lot of buildings the doors close too fast….It doesn’t give you enough time to get you and your equipment together and walk into the

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door before it closes and it catches…your arm crutch. Where it catch you in the doorway so now you got to stop and push the door open again and try and get through the door before it closes you in the door. And people, a lot of times they are handicap impaired, do not have a lot of strength in other parts of their body. So they can’t push a door as hard as or hold a door and manipulate trying to get themselves acclimated to the doorways and you know, without being fearful of falling… And that’s just true. Because I’ve been scared sometimes that I’m not going to make this and everything messes up just from not being able to think. ‘Hold up. Wait a minute. Push the door a little harder and get on and get in.’

Respondents did note that the entrances of many buildings now have automatic doors and ramps. However, once inside the building other areas are often not accessible: They put ramps that I can gain entrance around, if nothing else. I noticed that the old buildings, once I get in there, the bathroom isn’t. You know, it just has the ramp. It’s not full accessible. It’s just I can gain entrance to the building…they don’t have elevators. They might be like three stories and they just have a ramp so you can gain entrance to the building. But once you in there the elevators might be small. They’re for three people to stand in or—I mean I’ve run into that a lot of times, unless they’ve been modernized. Once you gain entrance that’s it. I can gain entrance, but that’s the only access I have. (Shawn, a 45-year-old man who is parapalegic and relies on a wheelchair for mobility)

The most common problem respondents experienced in the built environment were stairs and steps. Some of the respondents we interviewed were able to use stairs, although with varying degrees of difficulty. Jim, a 57-year-old man who is a below-the-knee amputee, described climbing steps as an inconvenience: “It's not as easy as when I had two legs. But it's not impossible. Just a little inconvenient.” For others, steps were very difficult, as was the case with Phyllis, who has multiple conditions including chronic obstructive pulmonary disease (COPD), human immunodeficiency virus (HIV), an artificial hip, and is awaiting a second hip replacement: The steps, and by me having COPD I have to take the oxygen with me [she carries her oxygen on the front of her walker]… It’s heavy and the weight of that plus the weight of the walker, having to lift the walker to go up the steps, that’s like a strain.

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For other respondents, like Desmond who now relies on a wheelchair following a stroke, climbing steps is simply not an option. As he puts it: “If it doesn’t have a ramp, I can’t go.” While many buildings now have escalators, elevators, and ramps that allow mobilityimpaired people to gain access, these accommodations are at times located in inconvenient places. For example, Frank, a 59-year-old man who has torn ligaments in his knee and is awaiting a knee replacement, described how in order to use the ramp at his doctor’s office he actually has to walk farther than if he just took the stairs: My orthopedist’s office, you go up the steps to get into the office. There is a ramp, but the door to the office is in the middle of the building and the ramp’s all the way down there [gestures with arm]. So if I park in front of the building, or as I’m facing it to the left, I got to walk all the way down to the end of the building.

Surprisingly, several respondents we interviewed also mentioned experiencing inaccessible bathrooms outside of the home due to heavy bathroom doors and small handicap-access stalls. For example, Diane, a 59-year-old woman who often relies on a motorized wheelchair following a stroke, sometimes has to abandon her wheelchair to access the bathrooms in her community: I’ve noticed that some of the restrooms, the doors are so heavy… Sometimes it’s really difficult because sometimes like at the hospital, they’re narrow and being they’re really heavy you have to position yourself a certain way in order that you can hold the door open all the while maneuvering the wheelchair… Normally the stalls, they have a big one…especially equipped where your wheelchair can fit inside. It’s the door getting in. Because often I have to park my wheelchair and, you know, leave it on the outside.

Others reported continuing to encounter bathroom stalls that are too small to use when in their wheelchairs. Shawn describes such an experience: The average building that only has a ramp out front of the building…it’s just not accessible from there on up. [The bathrooms] are specifically built for a person that’s able-bodied. Because I’ve been in…bathrooms where once I get the chair in there, I can’t move. I got to stay in that direction. I can’t turn around or get to this or get in a stall.

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In addition to barriers related to accessibility to and through commercial and public building structures, respondents also encountered a number of natural and built barriers involving the design of the community landscape, including steep ramps and hills, uneven sidewalks, potholes in the street, curbs, incomplete ramps or curb cutouts, and slippery surfaces in the wintertime. Encounters with these obstacles meant respondents had to depend on others for help, avoid these areas altogether, or (in instances when they were required to pass through these areas) put themselves in harm’s way. Hills were the most commonly cited natural barrier that respondents experienced in their communities and were challenging for a number of reasons. For respondents who wore prosthetics or who had ankle injuries, flexing the ankle to walk up an incline can range from difficult to impossible. For others, fatigue, pain, and balance issues posed challenges to walking up and down hills. For those who use wheelchairs, simply having the strength to wheel oneself up hills and steep ramps posed challenges. The effect that hills had as barriers in the community differed from respondent to respondent: they caused only a slight inconvenience for some, but great difficulty for others. Olivia, a 59year-old woman who has degenerative arthritis and a bulging disk in her back, said walking up the hill to her bus stop “can be devastating.” “It’s like a day’s work,” she added. No matter the amount of difficulty respondents had with hills or slopes, they tended to try to avoid them as much as possible, at times going out of their way to do so. For example, when asked about difficulty she experienced in her community Gayle, who suffers from a number of conditions, discussed her avoidance of steep hills in her neighborhood: When I go to CVS, I use my walker because I’m going downhill. I try that hill going down, but I ain’t coming back up… I go to the next block and it’s like a flat surface and I say, ‘I can do that one.’

Some respondents also reported difficulty with uneven sidewalks and curbs when traversing their neighborhoods. Again, these respondents tried to avoid these obstacles, often leaving them nowhere to go but in the road. For example, Dina, whose neighborhood has many buckled sidewalks, must walk in the street to avoid tripping: I walk in the street because our sidewalk is bent up like this [demonstrates with her arms]; sidewalk is—what it is, is there's a tree that the roots have pushed the concrete up so it's; yeah, I can't walk on it because I'm scared I'm going to twist my ankle. So I walk on the street.

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For Shawn, who must rely on a wheelchair to be mobile, the absence of curb cutouts also forces him at times to be in the road with the traffic. “On one side of the street is a ramp and then on the other… right across to the other side of the street there’s no ramp at all. I never understood that.” When asked what he does in these circumstances he stated: I stay right in the street with the—I mean I go towards the—face the oncoming traffic, and you know just wait for the cars to come pass. Other than that I ask somebody to put me up on the curb but by the time I wait on somebody to come, I’d be rolled down the street. Or go on the other side of the street, cross to the right, and get up on that curb and then go down that, you know, use the ramp on the opposite side to get on that side and go down the block and cross back over and stay on the same side of the street I was originally on.

These experiences with hills, slopes, and uneven sidewalks are not only demoralizing to people with disabilities, but they are also very hazardous. Respondents often had to spend a great deal of time planning for known barriers and unforeseen obstacles before leaving the house. Because physical barriers often limited the places respondents could go, it was extremely frustrating and disheartening when they arrived at venues they believed to be accessible only to find out that they were not. For example, Derek discussed at length the steps he takes to determine the accessibility of a venue and which mobility aid to take with him before leaving his home. He will use his walker, cane, or wheelchair depending on where he is going and how long he will be out. Derek noted that he finds it frustrating when he plans ahead but still experiences obstacles. In addition to the physical barriers, respondents also experienced a number of social barriers when it came to moving around in their communities. In particular, respondents discussed having to negotiate interactions with able-bodied others who would become impatient with their limited mobility and slow pace. Ben, a 50-year-old man who has limited mobility following an accident in which he broke his hip, pelvis, knee, and ankle, describes such an experience: Like walking down the street and people see you walking with a cane but they expect you to move out of the way. And they tell you sometimes ‘Hey, move out of my way!’ [He makes a face and lifts up his cane] “Hey, this hurts! …I could name a whole lot of specific events, but…it’s sort of like, ‘You’re in the way. Get out of the way.

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You’re moving too slow, move out of the way.’ Here’s a constant phrase, ‘You see me walking with this cane, don’t you?’ That’s a constant phrase…like number one on my hit list right now.

He also discusses how able-bodied others don’t pay attention in general to those around them when walking down the street: People don’t pay attention. They talk on their cell phone, walk down the street, and you have to stop and kind of put your cane out and poke them…you have to be like, ‘Wait a minute, pay attention to where you’re going.’ Because they will walk right over you or just stand there… They behind you, they get impatient. They’re in front of you, they act like you’re not there. There’s all kinds of stuff. They’re ridiculous.

Other respondents discussed similar interactions with able-bodied others who lacked patience with them when walking down the street. However, some of these respondents also noted to us that the use of their mobility aids did help assuage some strained interactions with ablebodied others in their communities. For example, Frank, who relies on a cane for mobility, discussed how able-bodied others interact with him differently depending on whether or not he is walking with this cane: People look at me and if I don’t have the cane, they don’t realize that I’m slowed down. I’ll be crossing the street and they’ll be like [raises arms to mimic frustration]. The cane’s almost like a warning device. They slow down… There are times when if I was crossing a wide street that you’re not going to make it on the light without moving quick… I use the cane partially for, you know, a warning almost to drivers or to other people, you know? Yeah, because I’m a big guy and people look at me and they can’t understand sometimes why I’m not moving quick. Sometimes people will do things where they’ll be walking ahead of me and they’ll hold the door and I’d rather get the door myself and, you know…if I have the cane they see that I’m not going to be quick. But if I’m walking without the cane they’re, you know, ‘I’m holding the door for you. What are you doing?’

In fact, several respondents who used mobility aids reported receiving unsolicited help when out in public. While some respondents reported that they appreciated the help they received from able-bodied others, certain other respondents that we interviewed discussed how they would rather do things for themselves. This was the case with Frank, who dislikes when able-bodied others hold doors open for him, thus making him feel like he then has to move quicker so they do not have to

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wait for him: “It’s easier to not have to move quick, and I’ll get it when I can. And I like to hold the door. I feel more comfortable, you know?” Additionally, respondents note that the help they receive from ablebodied others varies depending on what type of mobility aid they happen to be using. For example, Derek discussed receiving more help when he is using his wheelchair compared to when he uses his leg braces and/or cane: I am treated a little bit differently with the wheelchair. Well, people tend to want to help you more, assist you more. And that’s fine. But a lot of times I find it to be a bit…because I know what I need to do, especially when I’m getting to a door or something. I think…sometimes the person is meaning to do well, but sort of get in the way of what I; how I need to do it.

As in some of the instances described by other respondents, at times Derek finds this “help” to actually be more burdensome than helpful. In and around the respondents’ communities, physical barriers such as inaccessible buildings, uneven sidewalks, and nonexistent curb cutouts made it difficult, and in some cases impossible, for them to physically move around their communities. However, these physical attributes were not the only barriers faced by respondents in the community. Social barriers such as the stigmatization experienced when out in public also affected some respondents as they made respondents feel less worthy and rejected by society. Barriers to Transportation

We have already detailed a number of barriers that were present within respondents’ communities. However, within their communities barriers to transportation were particularly pronounced. Before discussing the numerous barriers respondents experienced when it came to public transportation, we should first mention that respondents noted significant improvements in the public-transportation system in their area, which made transportation much more accessible. The most common transportation accommodation respondents mentioned during the interviews were paratransit services for people with disabilities. Most respondents referred to a transportation service run by the local transit company that allows people with disabilities to call ahead and schedule a ride, although some also accessed a similar service provided through their insurance company. For many respondents, this paratransit

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service was their primary form of transportation, as it could accommodate their mobility aids and provided door-to-door service. The second-most-common facilitator to transportation cited by respondents was the addition of lowering or kneeling capability to public buses that place the entrance to the bus at ground level or automated lifts that lower downward to accommodate those who cannot use the steps. Buses were the second-most-common form of transportation used by the respondents we interviewed, and this feature was invaluable to them. Finally, respondents also said the local transit system is easy to use because there are escalators and elevators in the subway stations, priority seating for senior citizens and people with disabilities, and transportation stops located close to their homes. These transportation facilitators greatly increased respondents’ ability to access places outside of their neighborhood. However, when these features were not available, respondents were “disabled” in every sense of the social model of disability. Their absence meant respondents were often confined to their homes or neighborhoods, limiting their ability to be socially active and lead independent lives. As mentioned above, paratransit was the primary form of transportation for many of the respondents we interviewed, and these respondents found it a useful service when it operated as intended. However, almost half of these respondents also found this service to be extremely unreliable. Complaints about this service included being picked up too early, too late, or not being picked up at all; paratransit drivers getting lost; and witnessing drivers strand other riders when they could not find the pick-up location. Respondents described this service as “a headache to use,” “the luck of the straw (sic) [in terms of reliability],” “a pain in the butt,” and their “last form of transportation.” Furthermore, in order to use these services, respondents have to plan ahead and schedule rides, sometimes weeks in advance. Some respondents who could have benefited from this service instead opted out of it completely, as it prevented them from being spontaneous. Otis, a 50-year-old man who suffers from severe pain and stiffness in his knee, is one such respondent. He reported that he has begun to limit his activities because it can be too painful for him to walk up his street to the bus stop or to walk from other bus stops to his destination. However, he does not use the paratransit service in his community because he feels it limits his ability to be spontaneous and takes much effort to use. When asked why he does not use this service, he stated: I mean it might be a good thing for me. I’ve just never tried it. It just seems like a lot of headache to go through all that when I can just walk

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on up to the top of the street in five minutes and catch the bus. You know, I mean it hurts sometimes, but it just seems like less trouble for me. So I just don’t utilize it for that reason.

Astoundingly, the majority of respondents we interviewed who have used the paratransit service in their community reported that this service had on at least one occasion either failed to pick them up from their homes or dropped them off at their destination and never returned for them. In fact, one respondent had scheduled for a paratransit service to pick her up following her interview. The service never arrived and after waiting four hours and making a number of calls to the service provider, the woman had to resort to using the subway system to return home. To add insult to injury, the elevators were not working when she arrived at the subway station. In our interviews we found that elevator and escalator outages at subways stations were the most commonly cited physical barrier to transportation. During elevator outages, riders are forced to use the escalator or stairs to enter and exit subway stations, or they must take a shuttle bus to their desired destination. In fact, Shawn mentioned that elevator outages were so common in the subway stations that he taught himself to ride the escalators using his wheelchair: “I learned to do that real fast. Because you know how subway elevators stay down; like every other stop, if not every two stops. You got to go through your elbow to get to your thumb.” While such a strategy could be used to maneuver around an out-of-service elevator, additional issues can arise if both elevators and escalators were not operational. In these situations, respondents must either rely on shuttles to circumvent subway stations that have elevators and escalators simultaneously out-of-service or even forgo their trips altogether. Having to rely on shuttles during elevator or escalator outages greatly inconvenienced the respondents we interviewed. For example, Beth, a 32-year-old woman who often experiences skin ulcerations from her prosthetic leg, often has difficulty climbing stairs and walking long distances as a result of this impairment. She reported being so frequently inconvenienced by elevator and escalator outages at subway stations that she often opts to climb the stairs to exit from the subway station, despite the great physical pain she experiences: I can’t tell you how often the elevators are broken. And they say, ‘Go to such and such stop and then catch a bus.’ But that’ll take me an hour longer. No, I just suck it up and be in pain. I don’t have an hour to spare.

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As mentioned above, the respondents we interviewed often have to do a great deal of calculation and planning prior to leaving the house to ensure their destination is accessible. It can be extremely disheartening for a respondent to enter the subway system, only to find out that elevator or escalator outages were present at their final destination. Whether elevators or escalators are working or not, these respondents must also negotiate strained interactions with able-bodied others who are often in a rush to get to their own destinations. Ablebodied riders’ impatience and inconsideration of those with disabilities present additional challenges to the respondents we interviewed. Frank, who has great difficulty climbing steps due to torn ligaments in his knee, describes this as a common occurrence: I actually like to take the escalator if I can, with one leg on one step and the other on another step. It depends…if it’s busy…I’ll take the elevator only because people want to, you know, they want to walk up the escalators. They don’t want to ride up [the escalators].

Some respondents we interviewed noted that even when elevators at the subway stations are working it can be, at times, difficult to gain access to one due the large amount of people, particularly able-bodied people, using the elevators. This is a common experience for Diane, who has to use a wheelchair to gain access around her community: The elevator [in the subway station], sometimes it says that people with disabilities and the elderly go first, and you know they just…sometimes waiting and waiting for the elevator, and when it comes there are about six people on there, sometimes teenagers, sometimes businesspeople who just didn’t want to walk the stairs… The escalator might be broken in the station so they use the elevator and they don’t give people in wheelchairs priority to get on.

Although the respondents we interviewed noted significant improvement in the accessibility of public buses, including the addition of kneeling devices and lifts, when these features were not available or were broken, accessibility was greatly decreased. Lou, a 52-year-old man who suffers from nerve damage and must use a walker to be mobile, describes his experience with buses: Some buses don’t have a flat lift…Some buses have steps and it’s difficult for me to raise my leg up to step up on, and carry my walker on. And some of them don’t have that lift to bring the bus down, and that can be more hard for me to get up on when they don’t have that. I hate those buses with steps.

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Despite the fact that public buses are supposed to be equipped with manual lifts that the operator can lower to make entering and exiting the buses more accessible, no respondents mentioned having this available to them. Instead, when buses do not have kneeling devices or lifts, the respondents were forced to climb the steps or wait for another bus with a working lift. As with other forms of transportation, bus riders also discussed strained interactions with able-bodied others. For example, a couple of respondents discussed having to deal with able-bodied riders who grew impatient while waiting for them to access the bus. Phyllis experienced such an interaction on the day of her interview with able-bodied others who were too impatient to wait for the lift to lower so she could access the bus using her walker. Instead of waiting for the lift, these two ablebodied riders lifted her walker up onto the bus and then helped her up the stairs. Although she stated that she did not mind this and considered these riders to be helpful, she often forgoes using the bus when the automatic lifts are not working. Instead, she will tell the bus driver to continue on his route and that she will wait for another bus, with her justification being that “people are in a hurry to get home, so I don’t even bother.” Once they get onto buses and subway trains, respondents reported often having difficulty finding seating reserved for people with disabilities. While all buses and subways have priority seating for the elderly and people with disabilities, this seating is limited and is often used by others: There’s limited seating for handicap and the elderly on the bus… There’s five seats, and they’re designed for especially for those people. But should there be a wheelchair on board that flips up two of the…wheelchair and elderly seating automatically, which means that they’re only two seats left for elderly or handicapped. So where do they go? (Dina, a 43-year-old woman who relies on leg braces and a cane to be mobile)

A number of respondents also expressed frustration with ablebodied riders sitting in the priority seating and not giving up their seats when the elderly or people with disabilities board buses and subways. Rodney, a 58-year-old man with degenerative joint disease and uses a cane to be mobile, describes these experiences: Now on the front of the bus and the train there’s a section that says ‘seniors and persons with physical disabilities.’ And the people will sit

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there and just look at you. You know? And they see you having difficulty standing up…

Respondents expressed not only frustration toward able-bodied riders who sit in priority seating, but also toward transit employees who do not stop these riders from sitting in these seats. As Gayle, a woman with multiple conditions who uses a cane or walker outside of the home, states: “They always have people that sit on the senior citizen, the disability side, and the driver will never ask them to move. Sometimes I have to really stand up…” In another instance, even when showing his identification (ID) card to transit employees to indicate he is disabled, Ben noted that employees are nonresponsive to his needs: “Even though I show my handicap ID, I can’t get a handicap seat. Because their customer-service skills are nil. None.” When no priority seating is available, respondents must stand, opt for a regular seat, or wait for another bus or train, all of which are not only inconvenient, but can also be very physically painful and fatiguing for the respondent. In addition to not yielding the priority seating on subways and buses to people with disabilities, able-bodied riders also expressed frustration when these respondents took up extra space when standing. For example, Beth, who is a below-the-knee amputee, described herself as having balance issues even on “good days.” As a result of this, she must plant her feet wide to stabilize herself when riding the subways and has noticed that other riders do not appreciate this: [The subway] can be pretty—I don’t know if you take the [subway], but it’s pretty rocky at times. And I’m not über-stable on my feet. So I really have to kind of like hang on to the rail, you know, hang onto one of the poles or straps pretty solidly and kind of plant my feet pretty far apart, which in a crowded metro train some people don’t appreciate. But I’m like, that’s fine. You can fall against my prosthesis. I’m not going to feel it, so knock yourself out. [Laughs]

Respondents who take public transportation also recounted having their disability questioned by able-bodied riders when they asked for priority seating or need accommodations on subways and buses. Derek described an incident where he was approached by police to verify that he did in fact have a disability: We have these special disability cards [that give them access to reduced fares and priority seating] and I didn’t have any obvious signs of it, and I was actually pulled over by the police… So that was a bit unnerving, but you know, what can you do? I explained to them and I

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actually physically showed them what was going on with the leg braces, and they were like ‘Okay.’

Beth also recounted having her disability challenged by able-bodied riders when using public transportation as her impairment is not always visible: I have a fairly unique problem in that I wear a—I’m an amputee and I wear a prosthesis, and I always wear pants and generally socks in public. And there’s been times where I’ve asked to sit down and use the accessible seats, you know, when the train is full, and I’ve had people say ‘No, there’s nothing wrong with you.’ And then I get really belligerent and I lift up my pants leg and call them names. And they feel bad.

While it may be argued that able-bodied riders may not know if others riders are impaired just by looking at them and therefore do not realize they are taking an accessible seat away from them, respondents who use mobility aids—a very visible indicator of impairment—also reported being denied seating on public transportation. For example, Keisha, a 28-year-old woman who shattered her kneecap and must rely on crutches to get around, discussed being denied seating on public buses. She reported that she uses buses one to two times a week, but she will avoid taking them if she can, due to the lack of seating: By it being so crowded most of the time I don’t want to get on there with my crutches… I have difficulty because the buses be so crowded that—they supposed to have the handicapped seating, but people get in them seats and they don’t care if you’re handicapped or what you situation is. You’re going to stand there and I don’t like standing on my knee. I don’t like standing period; not for a long period of time. So I try not to use metro at all. And then when I had to use my crutches, that was even worse because you got to stand there with your crutches and you be packed like sardines. And you can’t hold on, so…they won’t get up for the elderly, so I know they ain’t going to get up for me.

Able-bodied riders’ general disregard toward disabled riders, particularly when subway stations and buses were crowded, inhibited some respondents’ ability to access transportation altogether. Several respondents mentioned that they try to avoid accessing public transportation when it is busy. For example, some respondents perceived that able-bodied riders were more likely to lose patience with them or act inconsiderately during rush hour. As Ben put it: “People in general,

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they don’t care. They rather you fall on top of them then move out of the way.” These examples clearly show that it is not only physical barriers that challenge and stigmatize respondents, but social barriers as well. Another challenge that respondents faced when using public transportation is the location of transportation stops themselves. For some respondents, bus stops and subway stations were a greater distance from their homes or destinations than they could comfortably walk. As Marcus states: “[The bus stop] is three blocks from my home, but it feels like six blocks.” A lack of seating at bus stops was also a significant problem for many of the respondents we interviewed, causing them to experience pain and fatigue while waiting for public transportation. Here, Olivia describes the discomfort she experiences while waiting for the bus: A lot of times metro buses doesn’t have seating waiting for the buses. My goodness! And I mean a lot of them have is old, and they’re talking them up now and they haven’t replaced them. But then when they do replace them, they’re normally only two seats. So you’re in trouble again…unless younger people get up and say ‘Yeah, okay you can have this seat while you waiting…’ But I find that very difficult. I mean very difficult! And it’s serious. Just standing there in the hot sun or pouring down rain.

However, not all respondents we interviewed relied solely on public transportation to go to different locations in their community. Those respondents who drive their own vehicles or frequently ride in others’ automobiles encountered two types of barriers: limited or inconveniently accessible parking and difficulty getting into and out of automobiles. A few respondents mentioned having difficulty finding accessible parking at various locations. One woman mentioned that there are times when she will have to drive around to find handicap-accessible parking, and if she cannot find any, she then returns home and has her daughter drive her back to where she was initially trying to park and drop her off. The reason she needs to use handicap parking is that she could not walk the distance from regular parking spots to her destination. Other respondents reported not having issues with finding handicap parking. However, they noted that this parking is sometimes located in inconvenient places, which actually causes them to walk further to their destination. For example, on the day of her interview, Nicole, a 48-yearold woman who suffers from bursitis, rheumatoid arthritis, and diabetic neuropathy, was so fatigued from walking from her handicap-parking spot in the public parking garage to the interview site that she had to stop and rest four times:

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The walk from the garage to here was an extremely difficult process. I had to stop at least, I would say at least four times I stopped before I even got here, to sit down on the bench because as I said I can’t walk or stand for long periods of times… That parking lot out here is a very nice parking lot, but the handicap—the way the handicapped parking is set up, it’s all this one giant row. So if I’m all the way over here, and I need to be all the way over here; when they should have it done it like an L-shape or catty-corner. It should have been better.

The handicap-accessible parking spaces she is referring to are on the first floor of the parking garage but consist of one long row that extends the length of the building. Therefore, if parked at the end of the row as Nicole was, one has to walk about two hundred feet just to get to the garage exit, and from there, the building serving as the interview site is approximately fifty feet from the garage exit. A couple of respondents mentioned difficulty getting in and out of automobiles, particularly cars that are low to the ground. With their limited mobility and strength, getting into and out of cars can be particularly challenging. Olivia describes the difficulty she experiences in this situation: If you kind of small or if you got a lot of weight like me, it can be devastating. Again, because I suffer with my knees a lot and you struggling, you know, to get in the cab and out of the cab. And you have to adjust the seat up. And sometimes you have to get in the back. So that’s a problem too. And I mean a big problem. Because cabs are kind of lower down on the ground…and you struggling to get in and out. It’s kind of awkward.

Similar to the social barriers faced while using other forms of transportation, Frank also noted that he perceives that other drivers are impatient with him in parking lots, as it takes him more time that usual to get in and out of his car: I usually look for a [parking] place where there is a couple spots because I take my time getting out, and you know what? I could park in the last row of the Disney World parking lot and somebody’ll see me parking there and think I know something and park right next to me. It cracks me up. But there’s a CVS and a little shopping center right near where I live, and I want to be able to open my door wide and I usually hold onto the door…to pull myself out. And I’ll park there and you know, it’s not—I’ll pass easy, close parking spot and somebody’ll pull up right next to me and then they’re like beeping… I probably could get the handicapped parking…I think I would be taking up a spot from somebody who really need it.

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Thus, even with respondents recognizing some significant improvements in the accessibility of the public-transit system, they still experienced numerous physical and social barriers that created an array of difficulties for them. As in other domains, respondents often had very few alternatives to these barriers (other than to stay home), and instead risked putting further strain on their bodies or, even worse, risked furthering impairing themselves to get to their desired destinations. Barriers in the Workplace

Of the respondents interviewed, nine were currently working, eleven were unemployed but looking for work, six were unemployed but receiving Supplemental Security Income (SSI), two were retired, and for two respondents this information was not ascertained. Few of our respondents reported experiencing physical barriers in the workplace. However, almost half of the respondents reported that they had to leave their previous jobs because the actual tasks and duties that were required of them at their place of work had become too strenuous. Although discrimination against impaired individuals in the workplace was made illegal in 1990 by the ADA, respondents reported experiencing social barriers at work, including being asked to resign and being refused employment. While not all respondents experienced overt discrimination, many did feel stigmatized as a result of their impairment and felt that such stigmatization was a factor that potentially prevented them from finding work. Although social barriers remained a problem, respondents who were currently working experienced very few physical barriers in the workplace. This was interesting, as a much larger number of physical barriers were faced elsewhere in the community and when using transportation. However, this was not to say that physical barriers were nonexistent. One exception to this finding was Beth, who struggles to enter the bathroom at her work when using crutches. While there are handicap-accessible stalls inside the bathroom, the door to enter the bathroom is heavy and requires a security code to open. It is difficult for her to key in the security code, open the door, and maneuver herself while using crutches. In her own words, Beth states: I have struggled with the door by myself. I’ve ended up having to call or wait for somebody to pass by and ask them to open the door. Once I’m in [the bathroom], I’m fine, and getting out is okay ‘cause you can just kind of kick it [the door]. That’s the only good thing about wearing a prosthesis: you can kick things really, really hard.

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Many respondents who were not currently working reported that their last job was too strenuous and that this was the main reason for them leaving. Moreover, the majority of the respondents who had left their jobs for this reason had not gained further employment. Such respondents were previously employed in a variety of sectors, including retail, manual labor, education (i.e., teachers, coaches), law enforcement (i.e., prison guard, crossing guard), healthcare (i.e., home health aide), all of which required them to be on their feet for extended periods of time and/or to perform manual tasks. While the majority of these respondents left their jobs voluntarily, they often reported that they had been under pressure from employers to leave. For example, Nicole, who worked as a corrections officer prior to becoming impaired, felt that she needed to resign from her position before she was fired. “It was resign or get fired. I was using up all my sick leave and there were days when I couldn’t function… I was in constant pain and couldn’t move.” Other respondents also voluntarily left their jobs because they found themselves too fatigued and in too much pain to adequately perform the duties of their job. For example, Michael, a 45-year-old man who suffered two fractured ankles, tried to return to his job after recovering from his injury but found the work to be too difficult as it required him to stand on concrete floors and perform monotonous, manual work for extended periods: “I needed the job, but I just found myself limited to how fast I could move; limited in the time I could be on my feet.” The majority of respondents who found their jobs to be too strenuous after becoming impaired later sought out more sedentary work where they would not have to be on their feet for such long periods or perform manual tasks. However, a couple of respondents reported a desire to continue doing the type of work they had done before their impairment. Michael was one such respondent. He desperately wanted to return to work following his injury and felt he would be able to perform his previous job if he could work reduced hours, as this would minimize the time spent on his feet: Let’s say four to five hours a night. I could do that. I don’t think I could do eight, eight-plus. Part-time, yeah. I’d give them my all for part-time… I really don’t want a desk job. Don’t want to go to some technical school or the computer. I don’t want to get into medical school, do billing and coding and all that.

Michael raises an important point here that is worth noting. It is not necessarily simplistic for any individual to change jobs, let alone to move into another occupation. In order for the majority of these

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respondents to change jobs, most of them would have to learn a new skill set, which for most meant going back to school to acquire a new trade or skill. A couple of respondents we interviewed had begun to do this, but others (like Michael) had not. A few respondents were directly asked to resign. However, when we asked how this made them feel, these respondents stated that they knew they could no longer effectively perform the duties of their job. Olivia, who was asked to resign from her job as a school crossing guard, states: “They told me I had to leave because it got to the point my legs would lock on me crossing the children across the street.” When asked about how she felt when she was asked to resign, she stated: “It was feasible. Because I was in and out, taking days off, going back, taking days off, going back… It would have gotten to the point where I would have to be sitting down a lot on the corner.” Other respondents were not given the option to resign, but instead were fired, at times without being given a reason. While some of these respondents did not believe their firing was associated with their disability, others suspected that this was the case. For example, one respondent who worked as an electrician was unable to perform his job to his full capacity after becoming impaired. A task that would once take him an hour to complete was now (following his impairment) taking him half a day to finish. Although his employer never told him the reason why he was let go, he highly suspected it had to do with the decreased productivity level caused by his impairment. In addition to termination of employment, the respondents we interviewed also reported being refused work because of their impairment. For Ben, this occurred when he reapplied for his job after taking a leave of absence for rehabilitation. Ben reported that when he reapplied for his job he was told that his position—a position which he had held for ten years—was no longer available. Instead they offered Ben a different position beginning at a starting salary. When asked if he thought this was due to his impairment, he stated the following: Yeah, for the simple fact that I wasn’t the person that I was before. Because now, I’m walking with a cane. And I couldn’t do; well, I could still do it but there are certain things that I couldn’t do and I guess they felt like—well, I was always in the public so I guess they had an idea that it didn’t look good for a company image while I’m walking around with this cane and not able to do the things that I used to do. Plus, I was on medication at the time because pretty much I wasn’t strong as I was before I had the accident. They didn’t come out and say it, but I’ve heard it from a few people who still work for them…

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In contrast, another respondent, Patty, a 57-year-old woman with carpal tunnel syndrome and arthritis in her knees, reported she was told outright that they would not hire her due to her impairment. “I went to work at some fast-food restaurant, and I had on my brace and the lady was like ‘Well, we would hire you but you might have problems keeping up with other workers.’ That’s discrimination! To me.” Others also suspected that they could not find work because of their impairment. However, they noted that employers are not going to be forthcoming and tell the individual that they would not hire them because of their impairment. Other respondents felt that their impairment was so stigmatizing that they might not be able to find work, unless they could somehow hide the fact that they were impaired. In fact, a couple of respondents noted that the presence of a mobility aid alone, such as a cane, may prevent them from finding work. For example, Caryn, a 50-year-old woman who suffers from significant pain in her knees, refuses to use a cane for that very reason: ‘Cause if you go apply for a job or something, it’s kind of hard to get a job if you coming in there with a cane. ‘Cause they don’t want you to get hurt on the job, you know, they have to be reliable for you.

Marcus, who must rely on a cane to get around, stated that he would not use his cane when going to a job interview because he felt that “it wouldn’t look good” to a potential employer: If I went to an interview I’d probably try to go without it [his cane]… Ninety-nine percent of the time, I have it, but it doesn’t look good. I think the first thing a hiree, or a hirer; I’m sorry, would think is ‘Oh, he’s sick,’ or ‘How many sick days is he going to have? How many doctor’s appointments?’ What I would probably do is stash it someplace.

Thus, Marcus and the examples of the other respondents provide evidence that although many of the physical barriers have been removed from the workplace, a number of social barriers still exist that must be managed by impaired individuals. Barriers to Leisure Activities

Respondents also experienced a number of barriers to participating in social activities. Additionally, most of these respondents stated that they were not satisfied with their level of social activity and would like to be doing more. For some respondents the inaccessibility of the natural and

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built environment prevented them from fully participating in activities they once enjoyed. Respondents discussed wanting to go to particular places, such as family members’ homes, sporting events, restaurants, shops, theaters, etc., but because accessing these places often involved climbing steps, respondents were often unable to go. For example, Shawn, who uses a wheelchair, discussed not being able to explore particular areas of the city due to insurmountable physical barriers: I’m going to tell you about a place I like, but I don’t like going there because, ‘cause all of the old buildings: [name of the area of the city]. [Name of the area of the city] is an obstacle for a person in a wheelchair ‘cause all those old buildings. And unless the entrance is right to the street you have to go up a lot of steps, or it’s going to be some work put in to gain entrance to some of those shops—a lot of those shops… A lot of those shops I would go in and spend some money, but a therapist once warned me years and years ago; just said ‘If you can’t gain entrance into a place or a residence by yourself, don’t get nobody to pull you up no steps because if something happened to you…’ It just be bad on my behalf to get in a situation like that.

As discussed above, respondents reported that some venues had become more accessible by adding ramps or handicap bathrooms. However, these are often the only accommodations provided. For Derek, who often uses a wheelchair when engaging in social activities, this is a common occurrence. Although Derek enjoys seeing plays, he does not frequent the theater as much as he once did because of accessibility issues. Some theaters he can no longer access, and those theaters that are accessible, often seat those with disabilities in undesirable areas: There are some venues throughout the city like theaters and things that are not very wheelchair friendly. So I’m limited as far as that… They specifically redesigned to accommodate a chair. The others are just horrible seats I would say. Just basically the back of the auditorium. You just slide in… And I find myself not going just because I know that the seating will be horrible. There is one theater in particular that is so, pretty dated actually, and it doesn’t even have an elevator to go up to the upper level… You can get into them [the theaters], but once you get in to them, just like I said at the one theater, you can’t go upstairs… It defeats the purpose, especially if you’re going to pay the same amount as someone a few rows up.

In addition to accessibility issues with the built environment, respondents also discussed limiting their activities due to their inability

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to access crowded places. Crowds not only made mobility difficult, but increased some respondents’ vulnerability in terms of personal safety. For example, Shawn described feeling anxious about his ability to be prepared and to feel safe in crowded places: I don’t like being around large crowds when I’m sitting in this chair. Like going out to clubs, or big venues or big events I don’t; I don’t feel comfortable. ‘Cause stuff happen too fast and the element of surprise, I’m not ready for that sitting in this chair, no big event. So I turn down a lot of invitations to go hang out…

Respondents also cited inaccessible transportation as another physical barrier to their social activities. As mentioned earlier, the respondents we interviewed often had difficulty accessing public transportation for reasons such as the crowdedness of buses and subways and the location of transportation stops. For some, these barriers in transportation limited their ability to be socially active. For example, Otis must walk to a further bus stop on the weekends due to limited bus service. The walking distance to this bus stop is, at times, far enough that he finds it too fatiguing to endure: On the weekends the commuter bus that goes up in front of, not the front of my house, but at the top of the street; it doesn’t run on the weekends. So on the weekends I have to walk even further to the bus stop that runs on the weekends… A couple times that kind of stopped me from doing stuff too, because I knew I had to walk all the way to the top of the street.

Sam, a 49-year-old man, also reported limiting his activities due to the location of transportation stops. While he used to visit family members frequently, he now limits his visits due to the distance he has to walk from the transportation stops to their homes: A couple places where I go, it limits. Like going to my sister’s…when I get off the bus it would take me an additional half-hour to get to her house. And it used to take me about five minutes, ten minutes, and so that’s one point. Then, when I go up to Bowie and visit my brother-inlaw…and where he live, the main road I have to walk up this big old hill, which would take me about a half-hour to get up there. Normally it would take me five minutes, but I’m just not feeling it. You know, and then when I get there I got to go up; walk up this driveway and then I got to walk up these steps to go on the porch, and then I got to walk upstairs to get to the room. So I’m constantly walking up.

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Prior to becoming impaired, he had no problems making these trips. However, since becoming impaired he finds these walks too strenuous to do on a regular basis. As mentioned earlier, respondents often had to plan ahead in anticipation of physical barriers. For some respondents, this meant figuring out which mobility aids could be accommodated, what sorts of barriers they were likely to encounter, and how fatiguing the trip would be. For some respondents, this meant limiting themselves to venues that they know are accessible or performing a dry run ahead of time to assess the situation. For example, Derek described how his frequent encounters with physical barriers force him to do a great deal of planning before going to new locations: “A lot of times when I go places initially I will go with [paratransit], the cane and the walker, just to map things out and see if I would be able to use the chair.” If he does not take these extra steps, he risks going out of his way only to find his destination is not accessible. The places I go out to eat; if I’m with someone are not as bad because I’m walking, or I’m a passenger in a car so it’s easy to get to a lot of places as far as that. But as far as when I’m taking out my wheelchair, I am - I’ll go somewhere that I know that the doors are going to allow me to get around. So it’s all about I’m not able to just say ‘Well, okay, let’s try this place and I’ll meet you there in the chair,’ because I don’t know if I’m going to be able to get in.

For some respondents, the planning it takes to participate in social activities and the possible repercussions of going out, such as pain and fatigue, begin to outweigh the benefits they feel they gain from socialization, and therefore they begin to withdraw from such activities. Keisha, a 29-year-old mother, describes how a recent attempt to participate in activities she normally did with her children prior to her injury turned out badly: I did get out and we went to the museum, but I had to turn around and come back home because my knee started to swell up. I guess I was doing too much walking…You want to go out and do things, but you can’t because you’re scared if you do too much. So like in my situation, like when I go home now I will have to put a heating pad on my knee just so it won’t swell up. You have to do all these things. You don’t feel like doing anything else. You have to make sure you take your medicines. If you go somewhere, you have to take it with you. You know, all those, you just feel like ‘Forget it, I’ll just stay home.’

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The additional planning and effort that must take place before leaving the house, coupled with the inability to be spontaneous or access the various places that one went led not only to a loss of activities, but, in some cases, even friendships. In fact, many respondents found it difficult to maintain their existing friendships after becoming impaired. Often this was the result of respondents’ inability to participate in the same activities they engaged in with their friends prior to their impairments, and their friends’ lack of sensitivity regarding this issue. For example, Jamal, a 44-year-old man who lost his right eye and suffered an ankle injury in an accident, discussed how he can no longer participate in the activities he once did with his friends: …my other friends I don’t even care to be around too much. Because they basically like to do other things. They like to play ball, this and that. Saturday morning, this and that. Things that I normally used to do, I can’t do. So I just prefer not to even, you know, to be in their way. Put it like that. But they still my friends and I still care for them. You know, they care for me but…you know, it’s not the same.

Similarly, Beth also discussed losing friends due to her inability to engage in the same physical activities she enjoyed before her impairment, and how this has led to some feelings of isolation: I am much less social than I used to be. Just because I tire so easily. I used to go out dancing. I can’t do that. I can’t dance, period. But I can’t stay standing in a night club for six hours straight anymore. And it’s amazing how many friends you’ll lose when you can’t do that. I used the night club example, but it could be friends who used to go on long dog hikes, you know, hikes through the woods with the dogs kind of thing. It is isolating.

As mentioned above, leaving the home and participating in social activities caused some respondents so much physical pain and fatigue, in addition to the effort it took to plan for physical barriers, that they have gotten to the point where they would rather just stay home. For example, when asked about her typical social activities, Latisha, a 39-year-old woman who suffers from severe arthritis, stated: “We might go shopping at the mall, but again I don’t do too much of these activities anymore.” When asked why she does not do these activities anymore she said: “Because I can’t keep up with everybody. I can’t keep up. I don’t know, if I walk too much and I know it, I’ll start hurting so I just—I know it’s [the pain] coming, so why do it?” Conversely, a few respondents try to

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keep up with their social activities, despite the pain they might experience afterward. As Laurie, a 46-year-old woman who suffers residual pain from an ankle injury, put it: “I try to do normal things even though it hurts or I might pay for it at night when I’m getting ready to go to bed. But I enjoyed my day and I didn’t let it get in the way.” Some respondents expressed frustration with how their friends interacted with them following their impairment. Often these friends’ behaviors were viewed by the respondent as demeaning or ignorant. The experiences of Jamal noted above provide a good example of this behavior. No matter how many times he explains to his friends that he can no longer engage in the same activities he did prior to becoming impaired, they still consistently ask him to participate without offering any alternative activities in which he could partake. Conversely Phyllis, a 60-year-old woman who suffers from multiple conditions, found her friends to be accommodating after her impairment—however, to the point of being demeaning. She expressed how her relationship with them has changed since becoming impaired: Well, we do have friends that come over, and I mean I’ll come out and sit in the living room or in the dining room, you know, with them and we be joking around and it’s entertaining, but other than that I really don’t do anything… I sort of feel like I don’t fit in. You know, to what they’re doing… I can’t do some of the things that I used to do and feel comfortable.

She goes on to discuss how her friends’ excessively accommodating behavior can make her feel “helpless” and like “an invalid”: They try to make me feel wanted, that’s the word I could use, but then sometimes they also have a tendency to make me feel that ‘Hey, I’m dependent upon them to do certain things for me.’ I don’t like feeling that way.

As a result, Phyllis has decreased the amount of time she spends socializing with her friends and family members, and when she does socialize with them she often feels uncomfortable. Some respondents also found it difficult to develop new relationships following their impairment, particularly intimate relationships. For example, Jim, a 57-year-old who walks with a prosthetic leg, feels that he is accepted by his male peers. However, he finds it difficult to date as he perceives women to be put off put by the idea of being intimate with a man who is an amputee:

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I’ve never had a woman come out and tell me this, it’s just something I sense. Sometimes I sense that women don’t want to get involved with a guy that’s got a prosthetic leg… I don’t think anybody in their right mind is gonna come out and say anything; it’s just a feeling. You know, women that I’ve pursued, you know…

Other respondents also reported difficulty forming new intimate relationships and, like Jim, attributed this to their impairment. While these respondents did not know if their inability to form new intimate relationships was directly related to their impairment, they suspected this to be the case. Like able-bodied others, these respondents also have internalized negative stereotypes regarding people with disabilities, feeling as though they themselves are unattractive and less desirable partners because of their impairment. Respondents also use these stereotypes to compare themselves to their able-bodied peers. As stated by Jackie, a 43-year-old woman who has pain and stiffness in her leg due to an injury: It’s just that, you know, you got a disability and you look at the other women. It make me have low self-esteem. Because then I feel, ‘Damn, they don’t have this, they got one over me.’…I just compare myself, like when I go out. And it’s not just about a person, but I compare myself to this person or this, or I think my friend messing with somebody and I say ‘Oh, and she,’ in my mind, ‘this person don’t have this handicap.’ Stuff like that.

In addition to these strained interactions, several respondents discussed being stared at by able-bodied others when out in public. This behavior made some respondents so uncomfortable that they avoided these situations. For example, Beth gave up going to the gym, an activity she once enjoyed, because she could not handle being stared at: I used to love going to the gym and swim. I don’t do that anymore. I did it once and got—I was just stared at horrendously the whole time that I was there. I could never subject myself to that again.

Others also discussed feeling self-conscious about their impairment when out in public, particularly when running into people they once knew. Donna, a 54-year-old woman who has had multiple knee surgeries and is obese, states: I remember when I used to—what I used to do, okay I can’t do that anymore but…it gives me a complex sometimes… I haven’t seen

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people in years and it’s like ‘Wow, what happened?’ …The last three or four years I’ve been isolated like this.

Although they are trying to be considerate, the manner in which others—even those she has known for some time—interact with her can also lead to uncomfortable and stigmatizing social situations. While others we interviewed could not recall any particular incidents when they felt outwardly stigmatized by others, they themselves had internalized stigmatizing beliefs regarding their impairment, and this prevented them from fully participating in social activities. The perceived stigmatization can be worse in some circumstances than the actual impairment in terms of preventing them from participating in activities. For example, Nicole, a 48-year-old woman who suffers from bursitis, rheumatoid arthritis, diabetic neuropathy, a weight gain of 150 pounds over the past two years, and self-reported depression, rarely leaves her house as she is too embarrassed to go out in public. “I can’t get around, and I don’t want to get around…because I don’t want to run into anybody that used to know me. You know, and see me in this condition.” Even leaving the house for basic needs, such as going to the grocery store is a significant challenge for her: It can take me days just to get ready to go to the grocery store. If I know I have to go, for instance I knew I had to go out today, I’ve been preparing for this since Friday. And it’s not necessarily getting myself up and moving type thing, it’s just mentally telling myself, ‘Okay, you have to go. You need to go. You need to get ready. Okay, you have to do this.’ It’s almost like I’m sitting there talking to another person. Yeah, I sort of have to pep myself up even to go out of the house because I don’t like to go out anymore.

Donna also discussed limiting her activities due to the shame she feels regarding her impairment: When I go to the movies, they don’t have large chairs. And by me being big and then have to go in the aisle across people with a cane is, come on, bad enough I’m going with this big body in front of someone trying to get to a seat, and then with a cane!

Rather than participating in their social worlds, these women remain isolated in their homes out of fear of rejection by other members of society because of their mobility impairments.

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In sum, the respondents we interviewed experienced numerous physical and social barriers in their homes and communities. However, the implications of these barriers were much further reaching. Not only did these barriers limit their ability to live independently in their homes and access their communities, but they also greatly challenged and inhibited their abilities to engage in work and participate in and enjoy social and leisure activities. In addition to the physical difficulties and discomfort presented by these physical and social barriers, they also presented more internal difficulties that served to demoralize to these impaired individuals. Experiences of Impairment

In addition to experiences of physical and social barriers in their homes and communities, the respondents we interviewed have to contend with the symptoms of their impairment on a daily basis. These included such things as pain, fatigue, weakness, balance issues, stiffness and swelling of joints, muscle cramping, numbness in limbs, muscle cramping, and immobility. These symptoms may result from experiencing various environmental barriers. However, even with the removal of these barriers, these symptoms would remain. As a result of these symptoms, respondents reported having difficulty walking, sitting, and/or standing for long periods of time. Activities they once took for granted such as getting dressed, being able to run to get out of the rain, or getting on the floor to play with children or grandchildren were now difficult to do. While some of these symptoms could be mitigated through the use of mobility aids, pain medications, therapies, and improved accessibility to homes and public facilities, they were not fully eliminated. Ultimately, such symptoms greatly affected these individuals’ quality of life. The most commonly experienced symptom among the respondents we interviewed was physical pain. Several respondents discussed how their pain was always present, but the severity could vary from day to day. For example when asked to describe the symptoms of her impairment, Kate, a 29-year-old woman who experienced an undiagnosed condition that caused her pain and stiffness in her back and legs, discussed how her pain is always present: It’s not a day that’s gone by in the last three years to be honest with you that my back pain and my leg doesn’t start. It’ll either be calm— the pain will be calm and won’t be bothering me that much. It’ll still hurt, it just won’t hurt as much. But the pain is always there.

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Often respondents commented that their pain was affected by events that were within their control, such as overexertion, and other occurrences that were out of their control, such as the weather. For example, a number of respondents interviewed discussed feeling increased pain on rainy days or when it was cold outside. As mentioned above, facilitators such as mobility aids, medications, and accessible spaces helped to alleviate some of the symptoms respondents experienced as a result of their impairment. However, these facilitators could also be hindrances at times as they caused side effects that led to further impairment. For example, respondents who wore prosthetic limbs and leg braces discussed the discomfort they experience from wearing these devices for extended periods. Additionally, in the case of prosthetic limbs, it is not uncommon for respondents to experience skin ulcers at the site where the prosthesis joins the leg. As a result, the discomfort experienced from using these aids for extended periods often forces individuals to cut their activities short or prevents them from participating in these activities altogether. Beth, who uses a prosthetic leg for mobility, discusses how her prosthesis limits her social activities: I’m a real foodie. So I used to um, you know; I mentioned Restaurant Week earlier, but particularly like on Restaurant Week… I would go out all seven nights of that week if I could afford it…and whereas now I just get so fatigued that I can only do it one night… [The fatigue] is distance-related in terms of walking, but there’s also what I call prosthesis fatigue which means I put it on at six o’clock this morning and the thing is damn uncomfortable, and come like six o’clock at night. I’m pretty ready to like sit on a sofa and take it off so my skin can breathe…it’s just uncomfortable. I haven’t ever had a comfortable prosthesis. I don’t think they exist.

Because of the discomfort caused by her prosthesis, Beth is not always able to participate in activities she once enjoyed or to do so as much as she would like. Likewise, some respondents who rely on pain medications to alleviate their bodily discomforts have experienced side effects from these medications that further impair them. In particular, respondents discussed feeling so sleepy from pain medications that they could not perform the duties of their jobs, operate motor vehicles, or leave their homes by themselves. Often respondents could be mobile with the help of a cane, walker, or wheelchair, but they found standing in one place or sitting for too long significantly increased the pain and stiffness they felt. Additionally, walking for extended periods of time or for any distance increased their

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pain symptoms. For individuals who symptoms were chronic, like Nicole, they avoided leaving the house altogether: Walking is a big difficulty. I can’t walk for long periods of time… So that limits my leaving—that just limits my leaving the house period. As I said I’ve been where I am for almost two years now, and because I don’t go anywhere because of the inability to walk and get around… It just makes getting around difficult at a certain point, when you have a disability, going out is not something you really want to do, you know? I actually don’t leave the house unless I absolutely positively have to.

Similarly, while some respondents had made modifications to their home to eliminate physical barriers, these did not always fully alleviate the pain and other physical symptoms they experienced when moving around their home. Despite having the most extensive modifications made to her bathroom of all the respondents interviewed, Gayle, a woman with a knee replacement and numerous conditions, continued to have difficulty bathing. She discussed how no amount of modification was going to alleviate the level of difficulty that she experienced when bathing, as this difficulty stems from her lack of the physical strength and mobility necessary to bathe herself, not from her inability to navigate the bathroom in her home. Respondents also discussed having difficulty performing other tasks that are not necessarily difficult to perform because of barriers, but rather because of the symptoms of their impairment. Here Dina, a woman who received injuries to her knees, hips, and pelvis when hit by a motor vehicle, describes the difficulty she has dressing herself: It don’t allow you to do things that you used to do, or dress the way you used to dress. You just throw something on because it’s more work. It takes more energy to do what you used to do than it does now…instead of it taking you ten minutes to get dressed, it takes you 45 minutes to get dressed ‘cause you’re tired. You have to slow down. Or just, you know, because you can’t bend over like you used to. See, I can’t reach my feet. So I have trouble buckling my sandals. But it doesn’t mean I don’t wear them. But you should see me in the house. Good Lord! I go through all kinds of things trying to, you know, get down there reach them and buckle them. It takes me about 45 minutes just to buckle one of those sometimes and sometimes it takes me less time…

Likewise, some of the difficulties some respondents experience outside the home stem from their impairment itself rather than physical

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barriers in their communities. For example, Lou, a 52-year-old man who suffers from nerve damage and must use a walker to be mobile, attributed the difficulty he has accessing the public transit to his impairment alone. He notes that the public buses have modifications to make accessing them easier for people with mobility problems. However, because of the weakness in his body and the balance issues he experiences, gaining access to the bus can still be a challenge: I have difficulty like getting on the bus. Even though they have a hydraulic lift, it’s just me because of my balance and stuff. Yeah, I do have problems sometimes. It’s not because of the vehicle itself. It’s because of me. I just be weak at times.

Like Gayle, Lou continues to have difficulty accessing transportation despite the modifications to make public buses more accessible. In Lou’s case, he will continue to experience balance and strength issues even if all barriers were removed in his environment. Symptoms of impairment had several significant implications on the everyday lives of the respondents we interviewed. First, in some cases respondents were not able to meet their own basic needs, such as getting enough sleep, bathing, and performing other household duties. As such they were reliant on others to help them perform everyday tasks. Second, symptoms of impairment also diminished some respondents’ involvement in their communities and, in some cases, left them feeling isolated. Respondents often discussed having to give up activities they once enjoyed due to the pain and fatigue these activities bring on. For example, several respondents discussed no longer being able to participate in activities that required physical exertion, such as dancing or running or walking for exercise. When asked how his impairment has affected his social activities, Ben said: “I can’t dance anymore... That was my favorite activity. I can’t go out dancing. All I can do it sit down and watch other people dance.” Activities that required respondents to be relatively immobile also often became less enjoyable because of the toll their symptoms took on them. For example, Kate discussed how sitting in a restaurant long enough to enjoy a meal is no longer a possibility: I’d like to be able to go out and eat, and be able to sit and have a nice lunch or brunch or whatever the case may be without being in pain. Be comfortable. Be relaxed and don’t have to rush back home. Just relax. You know? I don’t like having to get McDonald’s all the time and then run home because I can’t sit at a restaurant and eat. Sitting too long, that’s when it bothers me.

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Finally, respondents we interviewed also reported that the pain and fatigue they experienced affected their employment. Many of the respondents we interviewed had left their previous jobs because the work had become too physically strenuous. While accommodations could have been provided in the work environment to make it more accessible and alleviate some of these respondents’ symptoms, such as giving them more breaks or reduced hours, most respondents did not indicate experiencing physical barriers in their workplaces. Thus, it was not dealing with physical barriers that affected their work, but instead it was the pain, fatigue, and weakness they felt that ultimately affected their ability to perform the duties required by their jobs. Summary

Despite the advances made since the 1990 Americans with Disabilities Act (ADA), our findings show that even twenty years after the ADA was passed, the individuals we interviewed encountered numerous physical and social barriers on a daily basis, including those experienced in the home and one’s community, and those connected with transportation, work, and social/leisure activities. Additionally, impairment itself was a significant factor in these respondents’ lives, and respondents often attributed difficulty they had moving around and socializing with others to their impairment, not necessarily to physical and social barriers. However, even with the removal of these barriers, in some instances this pain and fatigue was still present, affecting these respondents’ quality of life. The respondents described such experiences in great detail. Still, even with a portrait of the various experiences of these respondents painted by their own words, the question remains of how these experiences shape the respondents’ identity claims as disabled. In the following chapter we will examine how the experiences of the physical barriers, social barriers, and impairments just described influence this identity, and how they are negotiated through selfprocesses to shape impaired individuals’ understanding of self. In other words, how do respondents make sense of these experiences of environmental barriers and impairment, and how does this affect their understanding of self? Notes 1. While these adjustments may have been needed, this should not be taken to imply that they were in fact completed by the home owner. 2. All names used are pseudonyms.

4 The Dynamics of Disability Identity

The adults with mobility impairments we interviewed provided a detailed perspective on their daily experiences with both the impairments they face and the physical and social barriers in their environment that can limit their ability to be mobile; engage in their communities; and interact with family, friends, and others. These detailed accounts are important in understanding the challenges faced by these individuals and how these challenges place people with mobility impairments in difficult and strenuous situations that able-bodied individuals might take for granted. Although this detailed account of everyday experiences gives us important perspective into the lives of these adults, it does not signify how these experiences relate to their identification as disabled. Thus, to better understand the components of this identification process, we further analyze this interview data along with a dataset nationally representative of the United States through a mixed methods approach to understanding the construction of a disabled identity. In this chapter, we examine these data to understand how physical and social barriers, level of impairment, and self-processes influence the acceptance or rejection of a disabled identity. While the quantitative, nationally representative data provide us with a broader picture of how these factors simultaneously work together, our further analyses of the qualitative interviews allow for a deeper understanding of the how a disabled identity is or is not embraced, particularly in regard to reflected appraisals and other self-processes.

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Quantitative Analysis Descriptive Comparisons

The quantitative data that enable us to make comparisons of the differences in disabled identity by level of impairment, environmental barriers, social engagement, social statuses, and reflected appraisals comes from the 1994-1995 National Health Interview Survey on Disability (NHIS-D) dataset.1 The final analytic dataset used in our study contained 1,780 individuals who self-identified as disabled (i.e., claimed an identity as disabled), and 1,857 individuals who did not selfidentify as disabled (i.e., rejected a disabled identity).2 Throughout all of our quantitative analyses, we used the sample weights provided with the NHIS-D data and accounted for its complex sample design using the appropriate design variables. Two-tailed t-tests were used in all instances to test for significant differences between those who did and did not self-identify as disabled (Table 4.1). For each of the three measures of environmental barriers, those who self-identified as disabled were significantly more likely to experience such barriers relative to those who did not identify as disabled (all differences p