Emerging Perspectives on Disability Studies

M. Wappett, K. Arndt, M. Wappett, K. Arndt

• Publisher: Palgrave Macmillan
• Year: 2013
• Print ISBN: 9781137372024
• eBook ISBN: 9781137371973
• Topic: Education
• Subtopic: Education Theory & Practice

Emerging Perspectives on Disability Studies brings together up-and-coming scholars whose works expand disability studies into new interdisciplinary contexts. This includes new perspectives on disability identity; historical constructions of (dis)ability; the geography of disability; the spiritual nature of disability; governmentality and disability rights; neurodiversity and challenges to medicalized constructions of autism; and questions of citizenship and participation in political and sexual economies. In sum, this volume uses disability studies as an innovative framework for its investigation into what it means to be human.

CHAPTER 1

A MODEL OF SOCIAL AND PSYCHOSOCIAL IDENTITY DEVELOPMENT FOR POSTSECONDARY STUDENTS WITH PHYSICAL DISABILITIES

Anjali J. Forber-Pratt and Steven R. Aragon

Social and psychosocial development for all students is a central goal of higher education. Courses in college student development and student affairs have become core classes across universities for students majoring in higher education leadership, higher education policy studies, and related areas. Such courses are designed to expose program majors to the profile of students attending institutions of higher education including four-year universities and community colleges. Additionally, such courses introduce participants to the theories that help explain how postsecondary students from various backgrounds develop social and psychosocial identities and the potential barriers and challenges they face on college campuses while moving through this process. As Evans, Forney, Guido, Patton, and Renn state, “becoming knowledgeable about student development requires serious study, including critical analysis and evaluation of theory and research” (2010, 2). Armed with this knowledge, daily interactions with students are improved and “program planning and policy development are both enhanced” (Evans et al. 2010, 2).

Over the past decade, courses in student development have emerged to address social and psychosocial identity development in areas including race, ethnicity, acculturation, multiracial, sexual orientation, and gender. Despite being over 30 years post Bogdan and Biklen’s (1977) “Handicapism” and a recent NCES report (2011) that found students with disabilities comprise approximately 10 percent of all postsecondary enrollments, such courses and related textbooks on student development have, for the most part, excluded disability identity development. To address this gap in the literature, we describe a developmental trajectory model of how individuals gain entry into disability culture and subsequently develop an identity. This model emerged through the views of four college students, with varying physical disabilities, on their perceptions of disability culture and how they came to identify as part of this group. As part of a larger research study, in-depth interviews were conducted to capture interpretations of the core features of disability culture and the trajectory of how one enters into disability culture.

This chapter is both timely and critical as current college students with disabilities represent the first generation to have lived the majority, if not all, of their lifetime with the Americans with Disabilities Act (ADA 1990) law in effect. Therefore, their story is important to capture and tell, as their perceptions may be quite different from those who came before them. Additionally, there is a history of the voice of people with disabilities being silenced in discussions about disability and those without disabilities speaking on behalf of the population.

The stories provide important historical perspectives that inform views on contemporary disability theory. The social model of disability posits that disability exists due to society’s failure to remove social, economic, and environmental barriers, which then alienates people with disabilities and denies them basic civil rights (Barnes and Mercer 2001; Finkelstein 1980; Oliver 1983; Shakespeare and Watson 2002). During the late eighties into the early nineties, people with disabilities formed a collective identity (Masala and Petretto 2008). This collective identity provided a voice for a group, though in recent years, there has been considerable debate about the modern day, post-ADA application of the social model of disability (Albert 2004; Bickenbach 2009).

It is only natural that 20 years after the passing of the ADA that the utility of the social model is called into question and reassessed for its applicability. It is our contention that we must explore and reassess perceptions of disability and how a person with a disability enters into a disability culture, specifically for college students born near or after the ADA. This means it is our duty to capture views of members of physical disability groups (i.e., spinal cord injury, cerebral palsy, amputees, etc.) to begin to piece together the puzzle of what disability looks like today.

Current Research among Populations with Physical Disabilities

Research on identity and self-authorship focused on the adult population can inform our understanding of the development of a developmental trajectory model of disability identity within the demographic of people with physical disabilities. Across adult populations, several researchers have focused their work on identity and its development in relation to multiple identities and stigmas. Information across these areas helps to further the discussion on identity development within the population of individuals with physical disabilities. The literature specifically on individuals with physical disabilities is somewhat sparse.

Among the first to research disability identity are Arthur Frank and Carol Gill. Frank (1993) describes how the acquisition of a disability leads to a period of critical reflection and eventual change of one’s previous identity to accommodate for the physical and emotional changes that come with acquiring a disability. Gill described disability culture as “certainly, our longstanding social oppression, but also our emerging art and humor, our piecing together of our history, our evolving language and symbols, our remarkably unified worldview, beliefs and values, and our strategies for surviving and thriving . . . the most compelling evidence of a disability culture is the vitality and universality of these elements” (1995, 17). Charmaz (1995) also notes the identity struggle that chronically ill individuals face because of the threat to one’s core self.

Because disability can occur at any point throughout the lifespan, it is difficult for researchers to agree upon a model of disability identity development. As Charmaz (1994, 1995) pointed out in her longitudinal study of 55 adults with a chronic illness, there is a difference between acquiring a disability if one has already achieved identity synthesis, or at least a well-formed identity, versus acquiring a disability when already grappling with one’s identity development. Though, as is true in the general population, a healthy identity, or in this case disability identity, has benefits. A healthy, intact identity provides a strong sense of self and ability to face ableism by reaffirming desired goals and personal worth (Albrecht and Devlieger 1999; Campbell 2008; Mpofu and Harley 2006; Noonan et al. 2004).

Just as in the nondisabled population, individuals with disabilities often have multiple competing or complementing identities. Research has shown how individuals with disabilities must integrate what it means to be a woman or a man, and develop or redevelop, that identity in congruence with their disabled identity (Asch 2001; Barron 1997; Charmaz 1994, 1995; Najarian 2008; Yoshida 1993). In her autobiography, Jenny Morris (1991) discusses this struggle of developing her identity as a woman with a disability as a member of a society that has predefined roles that women with disabilities ought to adopt. Similarly, in Barron’s (1997) qualitative study, one of the emergent themes from the interviews was described as the dream of womanhood. The interviewees described the struggles to overcoming the stereotyped belief that women with physical disabilities are asexual and cannot become homemakers or mothers.

Notably, Ostrander (2008) examined the intersection of multiple identities—masculinity, disability, and race. Results from this study, interviews with 11 men with spinal cord injury who identified themselves as an ethnic minority as well, revealed that the interaction of disability and ethnic identity was not deemed important, whereas other theoretical studies have presented the argument that the interaction between disability and one’s ethnic identity is important (Alston et al. 1996; Asch 2001; Mpofu and Harley 2006).

Stereotypes and stigmas also impact the identity development of people with disabilities. One such stigma is ableism, or discrimination against people based on physical ability in favor of those without disabilities. Ableism greatly influences identity development. As part of a program evaluation report, Ferreyra (2001) explained the heightened risk that adolescent females with physical disabilities have for developing and maintaining their sense of self because of stigmas and oppression. Several empirical studies related to women with disabilities have concluded that stigma and experiences of oppression jeopardize one’s development of identity (Anderson 2009; Barron 1997; Najarian 2008; Noonan et al. 2004; O’Toole 1979; Wendell 1989). Other empirical studies have reached the same conclusions with a broader definition of disability (Emery 1986; Hayden, Davenport, and Campbell 1979; Onken and Slaten 2000; Ostrander 2008).

To combat the degradation of disability identity development due to stigmas or oppressive experiences, some have included stories of individuals who report the best way to overcome such negative experiences was having a positive role model: someone established in disability culture (Barron 1997; Anderson 2009; Noonan et al. 2004; Weeber 2004).

The Model

In developing this model, we documented experiences from four college students with physical disabilities at the University of Illinois to understand their perceptions on disability culture and how they came to enter and identify with disability culture. The students interviewed for this study were between the ages of 19–24, and have lived the majority of their lives with the ADA in effect. As noted earlier, the disability literature up to this point addressing identity was, for the most part, conducted close to the passing of the ADA or sampled populations of adults who did not reap the benefits of the ADA for the majority of their lives. The University of Illinois was selected based on its rich disability history and culture. While it has a diverse population of students with disabilities, Illinois also promotes interaction between disabled and nondisabled counterparts. The University of Illinois has a deeply rooted disability culture, which made it a rich starting point to capture these experiences and stories. Illinois is home to the Division of Rehabilitation and Educational Services (DRES) known as the first postsecondary disability support service program in the world. This program has led to many disability-related “firsts,” many that have attracted numerous students with disabilities across the world to the University (University of Illinois at Urbana–Champaign Disability Firsts 2008).

To gather information, we interviewed 4 students and conducted 30 hours of observation in settings where persons with disabilities naturally congregate on the campus. The two settings used for observation were a residence hall designed specifically for students with severe physical disabilities and the resource building for students with disabilities. Both locations offer support for students including academic support recreation opportunities, sport-specific coaching, social experiences, and daily life settings as well as psychological support. The participants interviewed were Adam, Alice, Betty, and Cindy.

After collecting and analyzing these accounts, the information was used to define the core values of disability culture. The three central values were social justice, independence, and giving back to others. Using these as the foundation, further discussion with the students led to the development of how these values came to be and how these individuals learned the ways of the group and assimilated into disability culture. The stories from the students were used to describe a developmental trajectory model of how individuals gain entry into disability culture.

Developmental Trajectory into Disability Culture

The developmental progression that all interviewees described was telling about disability culture. Shown in figure 1.1 is the trajectory of an individual with a physical disability into disability culture based on conversations with participants. While the following stages are described, it is understood these are fluid. In the center of the circle representing disability culture, there are smaller circles of the subgroups identified by the interviewees as athletes with disabilities, students living at the residence hall for students with severe physical disabilities, those with other disabilities, and one group that straddles the bounds of the circle including personal-care attendants, family, and close friends.

Stage 1: Acceptance Phase

Regardless of whether a person was born with a disability or it was acquired, individuals go through an acceptance phase. Depending on how aware the person is of his or her surroundings and what age he or she was when the disability was acquired, the individual may go through the stages of grief outlined by Kübler-Ross (1969) as well as Kübler-Ross and Kessler (2005), including denial, anger, bargaining, depression, and ultimately acceptance. This happens within the individual first, accepting disability as an individual. For example, one interviewee, Adam, stated, “I never think because of my disability that I can’t do blah blah blah [sic].” This individual has accepted his disability and has made the decision to not let it limit him. Even on the documentation form to utilize disability services at this university, after asking about demographic information, a question reads, “To the best of your knowledge, please describe your disability. Include diagnosis as well as cause and date of onset.” In order to utilize services coming into the university setting, it is assumed that the individual is comfortable describing their diagnosis, their story, and their needs. It is expected they have passed through this developmental milestone.

The developmental progression that all interviewees described was telling about disability culture. Also wrapped up in this stage is the acceptance from family, close friends, and supporters of the person with the disability. Their acceptance is pivotal for individuals with disabilities to be able to succeed and move forward to become a member of disability culture. One interviewee reflected on the acceptance that came from his siblings saying, “It was honestly my sisters and my brother . . . like I knew I was different but I never view...

Table of contents

• Cover
• Title
• 1  A Model of Social and Psychosocial Identity Development for Postsecondary Students with Physical Disabilities
• 2  The Ontology of Impairment: Rethinking How We Define Disability
• 3  Disability, Vietnam, and the Discourse of American Exceptionalism
• 4  Past Perspectives: What Can Archaeology Offer Disability Studies?
• 5  Disability Studies and Social Geography Make a Good Marriage: Research on Life Trajectories of People with Intellectual Disabilities and Additional Mental Health Problems
• 6  A Spiritual and Transformative Perspective on Disability
• 7  Equality through Difference: Policy Values, Human Rights, and Social Justice in the Employment Participation of People with Disabilities
• 8  Beyond Visions of Repair: Evoking a Parlance of Capacity and Competence in Research on Asperger Syndrome and Schooling
• 9  Feminism, Rape Culture, and Intellectual Disability: Incorporating Sexual Self-Advocacy and Sexual Consent Capacity
• 10  Potentialities: Toward a Transformative Theory of Disabled Masculinities
• List of Contributors
• Index