Disability Identity Research Articles

Performing Normal: Restless Reflections on Music’s Dis/Abling Potential

Abstract This analysis aims to bring disability issues and the realities of systemic ableism to the center of discourse and action related to music therapy and social justice. An account of my evolving understanding of how ableism shaped my relationship with music draws attention to the importance of understanding the subtle yet palpable ways that ableism can invade even the most positive aspects of disabled peoples’ lives and, therefore, contribute in disturbing ways to the perpetuation of normalcy as the human ideal. I begin by providing some essential context to center my activist disability identity and the struggle that underpins the current analysis. I then engage with the performance of normal and explore my discovery of disability as possibility—a discovery that ultimately made space for significant transformation. An explanation of critical disability studies and ableism as important transformative influences follows, and I conclude by articulating some possible implications for music therapy education and training, research, and practice.

STRUCTURAL EQUATION MODELING OF HEALTH-RELATED QUALITY OF LIFE AMONG PEOPLE WITH VISUAL IMPAIRMENT

Abstract Visual impairment can lead to limited accessibility and activities and a decreased quality of life. This study aimed to test a hypothetical model based on the International Classification of Functioning, Disability, and Health to predict the health-related quality of life (HRQOL) of people with visual impairment. Data from 202 people with visual impairment were collected from August 2020 to November 2020 via telephone or e-mail. The overall fitness indices of the model for physical HRQOL (Normed χ2=2.076, GFI=.878, TLI=.900, CFI=.928, RMSEA=.073) and the model for mental HRQOL (Normed χ2=2.232, GFI=.884, TLI=.904, CFI=.932, RMSEA=.078) complied with the recommended criteria of structural equation model fitness, indicating that the models were appropriate for predicting the HRQOL of people with visual impairment. The socioeconomic status, multimorbidity, perceived environmental barriers, and activity limitation/participation restriction directly affected the participants’ physical HRQOL. Moreover, depression, disability identity, and activity limitation/participation restriction directly affected participants’ mental HRQOL. Age, socioeconomic status, depression, social support, and perceived environmental barriers affected the participants’ physical and mental HRQOL by means of activity limitation/participation restriction. The findings of the study suggest that the strategies aimed at increasing the activity/participation of people with visual impairment will be helpful in improving their HRQOL. Based on the results of this study, nursing intervention programs and services for people with visual impairment should be developed and implemented to provide more comprehensive care for this group and expand nursing science.

Disabled Visions: Eugene Lee-Hamilton, Physical Disability, and Poetic Identity in the Later Victorian Imagination

Disabled Visions:Eugene Lee-Hamilton, Physical Disability, and Poetic Identity in the Later Victorian Imagination Heather Tilley (bio) In the 1860s–1870s, a curious phenomenon dubbed "railway spine" exposed ruptures in the mid-Victorian male psyche. Hundreds of people claimed debilitating illnesses resulting from shock experienced in railway accidents, with the phenomenon signaling the start of the medical injury compensation era as numerous litigations were brought against railway companies. As the name suggests, the site of illness was frequently the back, with a significant proportion of people displaying symptoms of progressive forms of paralysis. Medical debate raged around whether illnesses were caused by physical damage to the spine or emotional trauma, a question that had significant implications for compensation claims. John Erichsen, in his 1866 medico-legal treatise On Railway and Other Injuries of the Nervous System, established a highly influential framework for interpreting certain forms of degenerative diseases as resulting from concussion of the spine.1 In other words, he argued that the physical damage was real and sufferers should be compensated for their injuries. However, Erichsen was uncertain as to how railway injuries might cause longer-term damage to the spinal cord, noting only that "if the spine is badly jarred, shaken, or concussed by a blow or shock, … we find that the nervous force is to a certain extent shaken out of the man, and that he has in some way lost nervous power" (p. 95). Significantly, this illustrates how railway spine was framed as a loss of masculine vitality: it was a condition that affected professional men using the railways for work in particularly significant numbers. Erichsen described how the male sufferer of spinal injury frequently became depressed: "His friends remark, and he feels, that 'he is not the man he was.' He has lost bodily energy, mental capacity, business aptitude" (p. 97). Erichsen's theory of the physical causes of injury was used by sufferers to seek damages against railway companies, amounting to over £2 million paid [End Page 607] out in compensation for personal injuries in Britain. This led to a counteroffensive by railway companies, which engaged their own experts to investigate cases. Herbert Page, surgeon to the London and North Western Railway Company, for example, refuted the possibility that railway injuries could—other than very rarely—cause injury to the nerve elements of the spinal cord, noting instead "the temptation to exaggeration and imposture" that pecuniary compensation encouraged. He also suggested that the cases for "general nervous shock," or "functional" rather than "structural" disturbance of the nervous system, were far more numerous.2 Erichsen had robustly argued that railway spine was distinguishable from "hysteria," noting the latter's association with young women rather than "hard-headed, active, practical men of business" (p. 126). Erichsen was intent on identifying an underlying organic cause to these cases to avoid confronting the notion of a masculine self in crisis; he sought to define the loss of masculine qualities of vigor and action as a product of physiological illness rather than the cause of it. The debates that raged around railway spine illustrate anxieties generated by the intersection of masculinity with physical disability in the mid- to late Victorian period. Disability studies scholars have examined the way in which disability more widely was characterized by its relationship to the emotions in the Victorian period. Martha Stoddard Holmes's study of disability across a range of Victorian discourses—including literature, medicine, and sociology—establishes convincingly how "[t]he connection between emotion and impairment" becomes a kind of "cultural shorthand … to indicate or produce emotional excess, add [sic] disability."3 Holmes points to the ways in which Victorian discourses of disability are "melodramatic": not only do we repeatedly encounter disabled characters in that most popular of Victorian literary genres, the stage melodrama, but, more broadly, physical disability is habitually associated with emotional excess, producing a social identity for disabled people defined in emotional terms. Disabled characters and people were becoming defined by their perceived capacity for heightened sensitivity and affect, blurring traditional categories of gender. As Holmes points out, "The distinction between abled and disabled bodies in Victorian culture (and our own) was produced partly in terms of the...

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

Français interactif by Karen Kelton, Nancy Guilloteau and Carl Blyth

Reviewed by: Français interactif by Karen Kelton, Nancy Guilloteau and Carl Blyth Julian Ledford Kelton, Karen, Nancy Guilloteau, and Carl Blyth. Français interactif. 4th ed. COERLL, 2019. ISBN 978-1-937963-20-0. Pp. 345. As research on language learner identity reveals more about the plural identities of Generation Z students and the connection between learner visibility and engagement, the use of pedagogical materials that allow for sustained and substantial inclusive language instruction is essential. Similarly, pedagogical materials that support the inclusion of diverse cultural contexts are needed to honor the identities of the instructors who make up the language learning commu nity. Far from being a static first-year French textbook, Français interactif presents the open-access curriculum from Tex’s French Grammar <https://www.laits.utexas.edu/tex> and Français interactif <https://laits.utexas.edu/fi> via a highly customizable and robust online platform. While the grammar references, exercises, and verb conjugation tables that both Tex’s French Grammar and Français interactif provide are beneficial for the practice phase of language instruction, the customization that Lingco <https://lingco.io> offers is essential for the overview and communication phases. Additionally, the Lingco platform allows instructors to enhance obsolete templates within those texts and remove cultural references that are no longer relevant or present problematic ontologies. Beyond this, the platform has several additional benefits. First, the Lingco personnel are very responsive and eager to help. They are also eager to learn how they might enhance their product from language instructors and language students alike. Second, the Lingco platform is compatible with other learning management systems such as Brightspace, Canvas, or Moodle. Third, with specific regard to language instruction, the platform allows for multimodal and interactive student engagement. For example, instructors can upload various forms of audiovisual media on which to base units, assignments, and assessments. The feedback that learners receive can also be of various forms. The Lingco platform also offers the ability to create vocabulary sets that are ostensibly more pertinent to learners than those found in traditional textbooks. Seeing that the platform is equipped with voice-to-text capabilities, learners can listen to the vocabulary sets that the instructor creates. Instructors may also include visual cues for each word. Thanks to this customization, traditional topics encountered in the French curriculum can be presented more inclusively. Perhaps most importantly, Lingco provides a platform for exploring language learning pedagogies that affirm disability, gender, sexual, and trans identities. What is more, these inclusive approaches to language learning can also be shared, as instructors have access to the global community of French teachers who have opted to share their materials in the Lingco content library. To be clear, Français interactif works best for instructors who have grown weary of not finding inclusive material among the thick volumes of language-learning textbooks and have resorted to finding various ways of including supplemental pedagogical material. Though the successful [End Page 240] execution of the Lingco program will require the instructor to do more preparation up front, the platform provides the tools that such instructors need to create, store, and promote the language-learning experiences they have always envisioned for their students. Julian Ledford University of the South (TN) Copyright © 2022 American Association of Teachers of French

Identity Negotiation and Reconstruction Following a Spinal Cord Injury: A Meta-Synthesis of Qualitative Evidence

<h3>Objective(s)</h3> To identify and synthesize qualitative evidence on individuals' subjective experiences of identity following a spinal cord injury (SCI). <h3>Data Sources</h3> PubMed, EMBASE, CINAHL, and PsycInfo were searched from 1980 to 2021. Selected systematic reviews and book chapters were also searched for additional articles. <h3>Study Selection</h3> Eligible studies examined identity-related experiences in adults with SCI utilizing qualitative or mixed-methods. Only studies published in English, including first-person accounts of living with a SCI were included. A total of 541 articles were screened by title and abstract, of those 68 were read in full for which 20 studies that met inclusion criteria. <h3>Data Extraction</h3> Using qualitative thematic synthesis methodology (Braun & Clarke, 2006), data (reported results) from each selected study were coded line-by-line to develop descriptive and analytical themes by two investigators. Characteristics of the studies and demographic information of the participants were also extracted. <h3>Data Synthesis</h3> Five overarching themes were identified: 1) constructing and negotiating the disability identity, 2) navigating the psychosocial sphere in an able-bodied world, 3) taking on and managing various roles following SCI. 4) impact of hospitalization and rehabilitation on personal identity post SCI, and 5) sexual identity post SCI. Participants discussed how they incorporated disability into their new identity and the role of support network and the broader social environment in shaping this process. <h3>Conclusions</h3> Findings shed light on the multifaceted nature of identity following SCI and the complexity of the identity reconstruction process. For health professionals looking to facilitate identity reconstruction in individuals post SCI, the findings highlight the importance of employing person-centred approaches in clinical practice and the value of involving family members and peers in rehabilitation settings. <h3>Author(s) Disclosures</h3> The authors have no conflicts to disclose.

Defining Disability: Creating a Monster?

AbstractDisability is often defined as deviation from putative norms of physical, cognitive, or affective function. This definition is normatively laden, causing people with disabilities to be thought of as “different” and treated with pity. We address the predominant theme of this issue on “Disability Identity”: defining and imposing the category of “disability” and attempting to overcome it through medical intervention. The issue culminates in a call for courageous humility as the proper response to encounters with disability, providing medical professionals with the disposition to resist medicine’s inherent drive to fix what is perceived to be broken—that which strays from the norm. We hope that this issue might act as a clarion call to medical professionals to reevaluate how they see and interact with “disability” as a category, and ultimately with people with disabilities, especially with respect to what may be owed to persons with disabilities from society.

"Marked" Bodies, Medical Intervention, and Courageous Humility: Spiritual Identity Formation in Nathaniel Hawthorne's The Birthmark.

Nathaniel Hawthorne's The Birthmark offers a sharp lens through which to examine power, purity, and personal identity. Scientist and spiritual idealist, Aylmer, is obsessed with "correcting" the only flaw he perceives in his wife Georgina, the imprint of a small red hand on her pale cheek. For Alymer, this one "imperfection" reaches deep into Georgina's heart, a sign of sin, decay, and mortality. It is the natural that must be overcome with science. Drawing on Hawthorne's tragic fiction, this paper questions the influence of stigma, power dynamics, and mind-body dualism in constructing disability identity within the framework of medical and spiritual practices of care. Whether in the role of a spiritual leader, chaplain, or medical professional, people providing care must first address ableism and perceptions of normalcy in relation to their own identity and calling before offering professional advice to disabled people seeking guidance or support. It is only as professional fields adopt a posture marked by courageous humility that healing practices will promote the flourishing of all people, including those with disabilities.

Disability Identity Among Diverse Learners and Employees at an Academic Medical Center

This survey study evaluates representation of persons with disabilities across demographic characteristics at an academic medical center.

Toward a More Inclusive Gig Economy: Risks and Opportunities for Workers with Disabilities

Little is known about whether and how workers with disabilities participate in the many on-demand labor platforms that make up the growing gig economy. Understanding disabled gig workers' experiences is a vital step toward developing inclusive and equitable labor platforms. Through interviews with 24 disabled gig workers and observational fieldwork, we present a rich, in-depth picture of the opportunities and challenges presented by four main types of gig work (ridesharing, delivery, crowdwork, and freelancing) for workers with a wide range of disabilities. We identify a key tension: gig work can be a vital source of needed income for workers who have been excluded from traditional workplaces, but at the same time, the structure of gig platforms present workers with a host of new disability-related challenges, including around algorithmic control and performance evaluation. We discuss how this tension plays out in terms of how workers engage in gig work and protect themselves from risk. We also call attention to how many workers can face complicated, intersectional challenges based on multiple marginalized identities in addition to disability, such as race, gender, sexual orientation, and socioeconomic status. Our work contributes to research on the gig economy by centering the perspectives of workers who are marginalized based on disability and other identities. We show how workers face several penalties based on disability, including shouldering extensive invisible labor to mitigate the challenges they face. Based on our interviews, we suggest several ways that on-demand labor platforms can be designed to be more inclusive of disability, including how to improve the accessibility of various tasks while mitigating the discrimination and negative interactions faced by disabled workers.

ENGELLİ HAKLARI HAREKETİ: BİR AKTİVİST HAREKET OLARAK GELİŞİMİ, TALEPLERİ VE TOPLUMSAL BAĞLAMI

Engelli hakları hareketi, engellilerin yüzyıllarca yaşadıkları sorun ve engellere yönelik bir itiraz olarak ancak 1960’lı yıllarda ortaya çıkmaya başlamıştır. Engellilik, ilk dönemlerde daha çok ahlaki bir çöküntünün cezası biçiminde değerlendirilirken, bilimin gelişmesi ve rasyonel düşüncenin öne çıkmasıyla patoloji ve anomali olarak görülmüş; bireyler, tıp ve rehabilitasyon gibi uygulamalı disiplinlerle tedavi edilmeye çalışılmıştır. Bu anlayış ekseninde engelli bireyler, çeşitli kurumlara kapatılmış ve toplumsal bağlamdaki ayrımcılıklar, engeller ve ön yargılar sorunun bir parçası olarak görülmemiştir. Engelli hakları hareketi ise bu tıbbi indirgemeci anlayışın ayrımcı, damgalayıcı ve dışlayıcı uygulamalarına karşı çıkarak, yaşanan sorunların kaynağının aktörlerin bedeninde değil, toplumsal ve kültürel yapıda aranması gerektiğini savunmuştur. Böylece engelli hakları hareketi, engellilerin eşit vatandaşlık haklarına sahip olmasını, bağımsız yaşamasını ve kendileriyle ilgili düzenlemelerde görüş ve düşüncelerinin dikkate alınmasını talep etmiştir. Ayrıca engellilerin önündeki toplumsal bariyerlerin kaldırılarak yeni bir engellilik kültürünün ve kimliğinin inşa edilmesi için mücadele etmiştir. Dolayısıyla bu çalışmada, engelli hakları hareketinin gelişimi, mücadele alanları ve talepleri üzerinde durulmuştur.

Workplace Discrimination and Microaggressions in the Child Life Profession

The child life profession in the United States primarily comprises White females. Little is known about the experiences of child life specialists with marginalized identities. This exploratory qualitative study examines the experiences of child life students and specialists with marginalized racial, ethnic, sexual orientation, age, and disability identities. Eighteen participants with self-identified marginalized identities took part in a study on navigating the field of child life. The authors used thematic analysis to find themes and subthemes in the data. In this manuscript, themes surrounding microaggressions, the perception of being othered, tokenism, and discrimination experienced in the workplace are described. These findings have implications for research and practice.

Building Neurodiversity-Inclusive Postsecondary Campuses: Recommendations for Leaders in Higher Education.

Building Neurodiversity-Inclusive Postsecondary Campuses: Recommendations for Leaders in Higher Education.

Ever-changing but always constant: “Waves” of disability discrimination during the COVID-19 pandemic in the United States

The ongoing novel coronavirus 2019 (COVID-19) pandemic has had considerable effects on the disability community. As the pandemic has progressed and changed, the manifestations of these effects have differed, and yet the underlying causes—ableism including the devaluation of disabled lives—have remained consistent. In this commentary, we explore the impact of the pandemic on the disability community in the United States, conceptualizing four distinct but overlapping “waves” of discrimination: 1) healthcare rationing and missed opportunities for disability inclusion, 2) access to resources, supplies, and accommodations; 3) vaccine access; and 4) long COVID and disability identity. Throughout our discussion of these waves, we detail the discrimination faced by people with disabilities, the underlying ableism that perpetuates it, and the resilience shown by the disability community. We end with a call for combating systemic ableism in healthcare and public health systems.

Neurodivergence, Embodiment, Empowerment, Pathography: Expressions from the Margins

Abstract G. Thomas Couser (1997:533) asserts in “Disability, Life Narrative, and Representation,” “The autobiographical act models the agency and self-determination the disability rights movement has fought for....” With autoethnographical prose, focusing on individual and community psychosocial implications of trauma, the paper offers story and analysis centered on embodied experience. This paper grounds lived experience of severe traumatic brain injury (TBI) with a lens of de-medicalizing disability. This paper provides windows on largely hidden and little understood forms of impairment from a frequently marginalized individual. The paper examines the experiences of a severe TBI survivor by exploring the temporal dissonance of impaired cognitive processing. The paper uses pathography to give emphasis to relevant Critical Disability Studies and Critical Trauma Studies scholarship. The paper explores how the intersections of living with multiple impairments (disabilities) while pursuing autoethnography as an unaffiliated researcher strengthens disabled identity, empowers the drive for self-determination, and provides agency to assert oneself politically to better reduce stigma and minimize oppression by the dominant culture. This paper examines the confluence of composing personal experiences of severe TBI survival with Disability Studies scholarship that promotes centering of self and (re)creating identity.

Rethinking Disability Inclusion in Intercollegiate Athletics

As higher education continues to strive to be inclusive and accepting of all identities, the NCAA must reconsider some of its practices and policies surrounding disability. The NCAA has started to recognize the importance of varying abilities within specific policies and procedures but there is still improvement that must be made to achieve an equitable experience for all athletes. By incorporating universal design into the implementation of the NCAA’s missions and priorities of academics, fairness, and well-being, the NCAA must re-examine which athletes are being excluded by its practices. Within academic regulations, the NCAA must reconsider initial eligibility, minimum credit hour requirements, and progress towards degree. The NCAA seeks to create an atmosphere of fairness; however, the inclusion of varying ability levels is excluded throughout various statements, hiring practices, and how specific sports are played. The NCAA has made well-being a top priority but this cannot be achieved without representation and focus on disability identity. This implies that more funding and resources should be implemented to support the understanding of disability identity development and formation. It is time for the NCAA to rethink how disability can be included thoroughly throughout all aspects of collegiate sports.

Young, gifted and black: the intersectionality of race, intellectual disability and neurodivergence

This article critically examines the impact of health and social care provision on separated categories of race, disability and neurodivergence. It deconstructs the racist impacts of the neoliberal individual budgets agenda as experienced by a young Black African person with intellectual disabilities and autism, living as a second-generation migrant in the UK. This article highlights intersectional methodological and practice implications for health and social care provision within England and Wales. The erasure of intersectional race, intellectual disability and neurodivergent identities in UK health and social care policies and practice procedures results in the invisibility, misrecognition and consequential misdiagnosis of the intersectional complexities of the needs and entitlements of young black people. The convergence of racist, disablist and elitist neoliberal agendas is identified as leading to increased risks of incarceration for young black people with intellectual disabilities and autism. The specificity of the individual needs of young black people with intellectual disabilities and autism demand anti-racist approaches that confront the assumption that Black African families in the UK ‘look after their own’ and require minimal social care involvement.

Social Support through a Blindness Organization Predicts Life Satisfaction and Positive Disability Identity

Background: Disability identity refers to self-concept as a person with a disability and includes such attitudes as disability affirmation and acceptance. Disability identity is emerging in psychological literature as a predictor of life adjustment among people with disabilities. Objective: This study examined predictors of disability identity and well-being (i.e., psychological distress, life satisfaction) among members of a blindness organization. The author hypothesized that perceived social support would predict more positive disability identity and higher life satisfaction as well as lower psychological distress. Methods: Participants included 142 members of the National Federation of the Blind (NFB) who participated in an online survey in 2020. Results: Findings from linear regression indicated that NFB members who reported greater social support through the organization had higher life satisfaction and more positive disability identity, adjusting for impairment-related, personal, and environmental factors. Conclusion: This study highlights the association between feeling supported through the NFB and experiencing higher satisfaction with life and more positive disability identity.

Factors Influencing the Career Decision Self-Efficacy and Outcome Expectations of College Students With Disabilities

PURPOSEUnderstanding the career decision self-efficacy and outcome expectations of college students with disabilities (CSWD) are important to ensure their career-related activities participation and transition into the workforce. Therefore, the purpose of the present study was to examine the influences of disability identity, ethnic identity, perceptions of career barriers, and social supports on the career decision self-efficacy and outcome expectations of CSWD.METHODThe study utilized a cross-sectional survey design and the sample consisted of 312 CSWD recruited at two 4-year universities in Midwestern and Southeastern areas. A series of hierarchical regression analyses was used to examine the factors, including disability identity, ethnic identity, social support, perceived career barriers, ethnicity, gender, and disability types affect career decision self-efficacy, and career outcome expectations of CSWD.RESULTSThe results showed that 30.1% of variability, F(7, 248) = 15.272, p &lt; .001, in career decision self-efficacy was explained by disability identity, ethnic identity, social support, perceived career barriers, ethnicity, gender, and disability type. Social support was the largest contributor to career decision self-efficacy. In addition, 56.1% of variability, F(8, 247) = 39.433, p &lt; .001, in career outcome expectations was explained by disability identity, ethnic identity, social support, perceived career barriers, career decision self-efficacy, ethnicity and gender. Career decision self-efficacy was the largest contributor to career outcome expectations.CONCLUSIONSSeveral implications for rehabilitation professionals, educators, and researchers are provided.First, the intersection of social identities (i.e., disability identity and ethnicity identity) requires increased attention in the rehabilitation fields. Sociocultural backgrounds and diverse identities are factors that have been identified as influencing career development of CSWD. Rehabilitation counselors and relevant professionals can play critical roles in supporting and empowering CSWD to develop positive disability and ethnic identities within the postsecondary education environments. Second, appropriate social support from family, peers, faculty, and disability service specialists, inclusive campus climate, and career-related development support in postsecondary education are essential for positive career outcomes of CSWD. Lastly, the effective career services could assist underrepresented CSWD building a sense of identity, confidence, and beliefs of competencies for career decisions and career outcomes, also, eliminate perceptions of career barriers attributing to intersecting multiple identities.

Animals in the Locality: Environmental Disaster, Disability and Human–Animal Spatial Identity Politics in Indra Sinha’s Animal’s People (2007)

The concept of disability has often been chained to that of animality as humanness is regarded as inherently marked by independence and rationality, the lack of which in animate beings is randomly associated with animality. The animality/humanity dualism, championed by anthropocentrism and ableism, not only affects the identity of humans with special needs by grouping them as Others but also disregards the agency of animals/nonhumans and nature by denying human dependency on and similarities with more-than-human entities. This research in its exploration of the connection between disability and ambiguous identity will focus upon the dynamics of the animality/humanity dualism in the context of an industrial disaster and ensuing disability as represented in Indra Sinha’s Animal’s People (2007). By understanding animality/humanity binary through the lens of local/global spatial distinction, the article scrutinises the way the animal/human ambiguous sense of place of the protagonist is mediated by his spatial relations. Building on both critical disability scholarship on animalisation of disabled humans and bioregional exploration of local/global spatial boundaries, the research, therefore, contends that the impact of environmental disasters on certain human groups creates a local (deformed humans as animals)/global (elite humans) spatial binary. The resolvability of such binaries, as the research further argues, is coterminous with developing a local bioregion, which is both connected to and dissociated from global/international places and is built upon humans–nonhumans/animals/nature interrelations that allow an agentic and inclusive human–nonhuman sense of belonging in the region.