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Write a paragraph (200 words) with a brief summary of the key points, analysis, and arguments of the reading, and any insights you might want to share (response format). Make sure to integrate at least two authors in your response.Reading(s):will be attachedEasy vocabulary. No plagiarism (studypools standards are 15\% and below). devlieger.pdf what_is_disability_culture.pdf Unformatted Attachment Preview ARTICLE IN PRESS Social Science & Medicine 64 (2007) 1948–1959 www.elsevier.com/locate/socscimed The production of disability culture among young African–American men Patrick J. Devliegera,, Gary L. Albrechtb, Miram Hertzc a Anthropology, University of Leuven, Parkstraat 45, 3000 Leuven, Belgium b University of Illinois at Chicago, Chicago, IL, USA c University of Pittsburgh, Pittsburgh, PA, USA Available online 23 March 2007 Abstract During the past two decades, debate about disability definitions, concepts, models and policies has been led primarily by Western white middle class disability activists and scholars. This paper contributes to the discussion by examining how disability is conceived and disability culture is developed in a poor, African–American community. The recognition of disability as a defining identity and disability culture as a cohesive force is unusual in the African–American community, and we ask what conditions are necessary for such an identity and culture to develop. To address this question, in 1998 we began a 5 year ethnographic research project concerning young African–American men in the spinal cord injury unit of an inner city rehabilitation hospital in Chicago USA. Based on this research, we argue that there are three necessary conditions for a disability culture to emerge in a group of African–Americans who acquired their disability violently. First, is the perception of social alienation from family and fellow gang members. Second, is immersion in a supportive physical and social environment where disability meanings are produced, reinforced and passed on across generations. Third, is the development of personal narratives and metaphors that give meaning to disability, anchor behavioral changes and help to reconcile value conflicts. Our analysis allows us to understand a change in identity among these young men and the emergence of a shared disability culture represented through signs, symbols, language, rules and ceremonies. This analytical framework also permits us to re-examine disability culture in white society and in specific disability cultures such as deaf culture and to suggest that while there are similarities across groups, disability culture is not monolithic. r 2007 Elsevier Ltd. All rights reserved. Keywords: Disability; Disability culture; Violence; African–American community; USA; Young men; Ethnography Main text In this paper we summarize the debate over the existence, emergence and characteristics of disability Corresponding author. Tel.: +32 16 326047. E-mail addresses: patrick.devlieger@ant.kuleuven.be (P.J. Devlieger), garya@uic.edu (G.L. Albrecht), mhertz@pitt.edu (M. Hertz). 0277-9536/$ - see front matter r 2007 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2007.01.008 culture. We ask if disability culture exists outside mainstream white society and if it is monolithic within and across subgroups of the larger disabled population. We examine the emergence of disability culture in a group of young African–American men with violently acquired spinal cord injuries (VASCIs). We identify and analyze the conditions that are necessary for the production of disability culture in this group. We conclude by asking if these ARTICLE IN PRESS P.J. Devlieger et al. / Social Science & Medicine 64 (2007) 1948–1959 conditions are also necessary in the emergence of disability within different segments of white society and of other subgroups like Deaf people. Disability culture has been a central theme in the development of the field of Disability Studies in Britain and the United States (Brown, 2000; Charlton, 1998; Linton, 1998; Shakespeare, 2005). Beginning in the 1980s, there has been a debate about whether or not the concept of culture could be meaningfully applied to groups such as disabled people, since disability results from a wide range of mental and physical conditions and spans age, race, gender, ethnicity, social class and national boundaries (Scheer, 1994). At first inspection, a common disability life and experience did not seem to be something shared by all disabled people. After considerable debate, however, many scholars, and particularly disability activists, agreed that there is a unifying disability culture that emerges across seemingly divergent groups. While the debate continues, attention has shifted to defining disability culture, examining whether it is experienced by and applies to all disabled people and whether it develops in a monolithic or multicultural forms (Cohen, 1999; Hanchard, 1990; Meekosha, 2006). Taking this direction, Gill (1995) identified four elements common to the development of disability identity and disability culture: unification through the coalescence of disparate groups around common issues; communication through a shared appreciation of art, language, symbols, and rituals that represent disability; fortification in collective gatherings and expressions that strengthen the identity of disabled people; and, recruitment of new members. While this discussion was useful in focusing attention on the underpinnings of the disability movement, it left the impression that disability culture is common, monolithic and emerges in similar situations. Another approach to identifying the characteristics and emergence of disability culture is to emphasize that it is oppositional to mainstream culture. From this perspective, Hahn (1985) asserts that disability culture results from disabled people being members of a minority group, and proponents of the social model of disability argue that the defining issues of disability culture result from lack of recognition and the oppression of disabled people by the larger society (Altman, 2001). According to oppositional models, the building of an activist community and empowerment of disabled people is the effective response to oppression (Peters, 2005). 1949 Following the suggestions of Meekosha (2004) and Shakespeare (2005), we examine the possible formation and nurturing of disability culture in other than white communities. While disability as a socially organizing concept is virtually unclaimed in the African–American community (Devlieger & Albrecht, 2001) and by extension the existence of disability culture is doubtful, the question is raised: Can disability culture take shape in an African–American group and, if so, what are the conditions that enable the development of such a culture? For the purpose of this article, ‘‘culture’’ should be understood as both the process and result of meaning making activities expressed through signs, symbols, language, rules and ceremonies. We emphasize the role of human agency and institutions in the process of creating meaning (Lutfey & Freese, 2005). When we consider culture as a result of meaning making, we note the importance of communication and the impact of power relationships in the development of culture whether through individuals or from enabling or oppressive environments and institutions. Culture, in our view, is not static, monolithic, easily malleable in its content nor absolutely determinant in its defining of a group of people. It results from the interplay of an historical cumulative process, the agency of meaning making individuals and environmental forces. Disability culture as a process of meaning making occurs within and across the boundaries of the individual, group, community, nation and global society. At the level of the person, one can speak of disability identity while at a global level one can speak of the shared ultimate meanings, values of life and of a disability worldview (Devlieger & Albrecht, 2001). Disability culture arises from raising and finding answers to these questions of identity, values, meanings and worldview. The literature regarding the identity and culture of those with VASCI and those who have other ‘‘emergent disabilities’’ is sparse (Hernandez, 2005). Questions in the literature regarding violently acquired disabilities concentrate on epidemiological data, quality of life, and rehabilitation outcomes (Dijkers, 1999; Groce, 1998; Putzke, Richards, & DeVivo, 2001). On the other hand, this paper emphasizes the individual, social and cultural contexts of violently acquired disability. Our interests turn towards the long-term implications of violence on our understanding of disability and of disability culture in particular. ARTICLE IN PRESS 1950 P.J. Devlieger et al. / Social Science & Medicine 64 (2007) 1948–1959 Methods This research is part of an ongoing project begun in 1998 to study the intersections of violence, disability and disability culture within the inner city, African–American community in Chicago (Devlieger & Hertz, 1999). The researchers used a mixed set of research methods, including ethnographic interviews, focus groups, behavioral observations, and collection of publicly available data to ground a situational analysis in the spinal cord injury unit of a specialized rehabilitation hospital (Inner City Rehab—a pseudonym) where seriously disabled, young African–American men went for rehabilitation after surgery for their violence-related injuries (Clarke, 2005). The focus of this study is on African–American adolescents and young adults disabled from interpersonal violence due to gun shots, stabbings and beatings, a group that fits within the new types of ‘‘emergent disabilities’’ (Seelman & Sweeney, 1995). Social context of the study Chicago remains one of the most racially segregated cities in the United States, where large neighborhoods on the South and West sides are 60–90\% Black (gangresearch.net, 2005). Recent work (Sampson, Morenoff, & Raudenbush, 2005) shows that violent behavior in these areas results from an interaction of individual, family and neighborhood factors. The Chicago Police Department Gang Investigation Section estimates that there are between 30,000 and 50,000 hardcore gang members in the city who belong to major gangs such as the Vice Lords and Black Peace Stone Nation. Many of these members have spent time in jail. Impairments often resulting in disabilities occur due to wars about control of the narcotics business, including murder, drive-by shootings, robbery, battery, assault, extortion and intimidation, burglary and theft (Chicago Police Department, 2005). In 2001, Chicago’s murder rate, 22.9 per 100,000 people, was the highest of any large metropolitan area in the United States. Fully, 68\% of the victims (665) and 69.5\% of the known offenders (431) were Black. Of these, 46\% of the victims and 60\% of the known offenders were young males between the ages of 10 and 24 and many belonged to gangs. While homicides are a major concern for society and studied in depth, much less attention has been given in the literature to the number of young men in these neighborhoods who were not killed but were shot, stabbed, assaulted, impaired and seriously disabled as a result of this violence (Cook & Ludwig, 2000). To address this problem, we focus our research on African–American youths who received spinal cord injuries due to violence in their neighborhoods. This is an obdurate problem because rehospitalization and complications for VASCIs are found to be significantly higher than for individuals whose spinal cord injury is not violently acquired (see Dijkers, 1999). Sample After study approval by the Institutional Review Board at the University of Illinois at Chicago, VASCI volunteers were recruited with the assistance of the spinal cord injury unit coordinator for participation in videotaped interviews and consented to participate in the study. In this predominantly male group, six African–American males agreed to participate in the interview sessions. They all lived on the near West Side of Chicago at the time of being shot, were between the ages of 22 and 35 at the time of the first interview, had a high school education or less, were poor and all but one belonged to gangs. None were married but some had children. Four were paraplegic, meaning that they had upper body control and two were quadriplegic meaning that they had no control over their arms or legs. Pseudonyms are used to identify the study participants in the results section to preserve their anonymity. A comparison of the individuals who agreed to participate in the study revealed that they were representative of the larger population. Data collection In the first phase of the research in the hospital we conducted participant observation and held focus groups in the spinal cord injury unit at Inner City Rehab. This consisted of once-a-week observations of outpatients in their clinical consultations with the doctor for about 3 months. During this 3-month period 35 outpatients were observed in interaction with their physician and the support staff. No written records were taken during the clinics but some quick notes were made in-between consultations that were later transcribed into expansive notes. These visits enabled the researchers to listen to the conversations between the doctor and ARTICLE IN PRESS P.J. Devlieger et al. / Social Science & Medicine 64 (2007) 1948–1959 patients, identify the medical and social issues that arose in the clinical encounter, record how ‘‘illness narratives’’ were constructed (Kleinman, 1984) and develop questions for later semi-structured interviews. A second type of data collection consisted of extensive, semi-structured, life history interviews including probes, with individuals in the VASCI unit. A third step consisted of interviewing family members and doing participant observation in multiple residential settings in Chicago’s West Side communities where these people lived. The issues taken up during the interviews revolved around life before becoming disabled such as family life and personal relations, school and work experience, introduction to and involvement in gang activity, drug involvement, and involvement in violent and/or illegal activity. Interviewees were probed for detailed information but never forced to volunteer information. Detailed attention focused on the event and circumstances of being shot and injured, acute care, experience in the hospital, current activities, and future options. For most of the interviewees, an interview session lasted between one and one and a half hours. All VASCI individuals were interviewed at least twice over a period of months. A fourth type of data collection involved acquiring demographic, crime, community and infrastructure characteristics on the neighborhoods where our subjects lived from government and public agencies. In addition, community leaders on the South and East sides were interviewed about the problem of youth violence in their communities and the lives of VASCIs who returned home. Finally, researchers working on violence reduction projects in these communities were also interviewed about what they knew of disability related behavior and events in these communities. Analysis The analysis is based on a combination of interview and ethnographic data with particular attention being given to narratives, metaphors, signs, symbols, language, ceremonies and group interaction and activities. Our analytic approach also focused on the importance of place. We developed an interest in the hospital as a physical and social space imbued with meaning and values, one that contributes to the socialization of individuals into a disability culture. This stage of data 1951 collection and analysis also turned our attention to the social processes taking place at the hospital that contextualize the illness narratives, discourse, and disability worldviews. Results Becoming disabled from street violence We begin our analysis with the narration of incidents by which six individuals Jason, Kwame, Rudy, Richard, Ben and Eddie (all fictitious names) became disabled. The incident becomes the natural turning point around which a narrative is constructed. The story of their lives is divided into the periods before and after being disabled. The recounting of a few selected stories makes the point. Kwame (25 years) Back in May 1983, I was boarding a bus toward one of my favorite restaurants. Me and my brother, we were going to celebrate my passing of a test. There was some guy we met at the bus stop. We didn’t really know him that well. He was a gang member and y I would like to mention I myself was a former gang member. Anyway, a fight had started on the bus and the rival gang members actually had guns on the bus and so, a fight ensued after that. There was a lot of shooting and I myself and my brother was hit. My brother’s gunshot wasn’t that serious, but unfortunately the bullet actually pierced my collar bone and it actually went through and severed my spine cord, leaving me a C5–C6 quadriplegic. Richard (26 years) It was August 29th I got shot, okay. I was outside, just hanging out, talking to some friends of mine. Some couple of guys came through the alley. I wasn’t paying attention to it. The second time they came around, I thought something ain’t right about these guys here. Then the third time they came around they stopped in front of us. I said, man, what blows that? They tried to play it off like they was looking for some dope y but they were looking to shoot somebody. ‘‘Ain’t no blows right here for ya, go to the other end, we’re here kicking it.’’ And then, I saw the barrel of the gun sticking out the car. I just kept my composure. I played it off like ‘‘you know what time it is, dude?’’ He said, ‘‘Yeah ARTICLE IN PRESS 1952 P.J. Devlieger et al. / Social Science & Medicine 64 (2007) 1948–1959 man, time for your ass to get shot.’’ ‘‘What do you want to shoot me for, what did I do to you?’’ ‘‘You know, you’ve got a problem, the way you responded to that statement.’’ I say, ‘‘Aw man, you’re just looking out trying to shoot somebody, man, I’m not the one with the problem.’’ And so, then, his boy got out from the side and he said, ‘‘Man, shoot that marv.’’ And so, the old boy that had the gun, he was in the back seat of the passenger side, he stepped out of the car and he blasted me in the chest y for no reason! At first, I got shot right here and they thought they shot me in the heart but the bullet went in my lung. They were just going around shooting people. Ben (25 years) I got stabbed in a robbery attempt. I got injured while I was on my way to work. It was like 5 O’clock in the morning and I was walking through the gangway and it was two people who tried to rob me. When I was trying to give them my money, I got stabbed on the right side under my arm. My legs just went out. I couldn’t move and I stayed in the gangway for like an hour before somebody even seen me. Then, I began choking in my blood. When they came, they couldn’t give me anything to ease the pain because I was drinking and getting high that day. Then the doctor came in and said ‘‘Do you want me to tell your mother that you will never walk again or are you going to tell her?’’ And that blew me right then and there. The shock of alienation The task before these VASCIs to reassess their lives in light of these traumatic events, confronting impairment and giving meaning to what is new is often in shocking contrast to their previous life experiences and values (Clifford, 1990). This process of reassessment and reflection takes time and adjustment. The social relations of violently disabled men become organized around the category of disability. This is the result of social alienation from their former membership groups (gangs), new group identity with other VASCIs, perceived stigma about the violent manner in which they became disabled, and the experience of the hospital as a safe haven. ‘‘Permanent disability’’ resulting from traumatically in ... Purchase answer to see full attachment