Disability Rights Movement Research Articles

Intersectionality of Disabled People through a Disability Studies, Ability-Based Studies, and Intersectional Pedagogy Lens: A Survey and a Scoping Review

Disabled people face many social problems in their lives, as outlined by the UN Convention on the Rights of Persons with Disabilities. These problems often increase when disabled people also belong to another marginalized identity. The first aim of this study was to report on the extent and what intersectionalities are mentioned in academic abstracts in conjunction with disabled people. Various intersectional concepts are used to discuss intersectionality-related issues. The second aim was to ascertain the use of intersectionality-based concepts to discuss the intersectionality of disabled people. The field of intersectional pedagogy emerged to discuss the teaching of intersectionality linked to various marginalized identities. The third aim was to ascertain the coverage of how to teach about the intersectionality of disabled people in the intersectional pedagogy-focused academic literature we covered. Ability judgments are a general cultural reality. Many ability judgment-based concepts have been developed within the disability rights movement, disability studies, and ability-based studies that could be used to discuss the impact of ability judgments on the intersectionality of disabled people and enrich the area of intersectional pedagogy. The fourth aim was to ascertain the use of ability judgment-based concepts to analyze the intersectionality of disabled people. To obtain data for the four aims, we performed a manifest coding and qualitative content analysis of abstracts obtained from SCOPUS, the 70 databases of EBSCO-HOST and Web of Science, and an online survey in which we ascertained the views of undergraduate students on social groups experiencing negative ability-based judgments. As to the 34,830 abstracts that contained the term “intersectionality”; the 259,501 abstracts that contained the phrase “intersection of”; and the 11,653 abstracts that contained the 35 intersectionality-based concepts, the numbers for these abstracts that also contained the disability terms we used for our analysis were 753, 2058, and 274 abstracts, respectively, so 2.16%, 0.79%, and 2.35%, indicating a low academic engagement with the intersectionality of disabled people. We found many different intersectionalities mentioned in conjunction with disabled people, but most were mentioned only once or twice, with the main ones mentioned being race and gender. The literature covered made little use of most of the 52 intersectionality-based concepts we looked at (35 identified before the study and 17 more identified during the analysis). The literature covered also did not link to the area of intersectional pedagogy. Of the 25 ability judgment-based concepts, only the term ableism was used. As to the surveys, most students saw many of the social groups experiencing negative ability judgments, suggesting that the ability judgment-based concepts might be a useful tool to discuss intersectional consequences of ability judgments, such as intersectional conflict. Our data might be useful for intersectionality studies, intersectional pedagogy, disability studies, ability-based studies, and other academic fields that engage with intersectionality or with disability issues. Our study might also be useful for academics covering various topics to engage with the intersectionality of disabled people as part of their inquiries.

Moving, Thinking, and Representing the Autistic Mind/Body

Abstract When released, the Korean drama Extraordinary Attorney Woo (ENA, 2022), chronicling the adventures of Woo Young-woo, an autistic lawyer played by neurotypical actor Park Eun-bin, quickly became a global hit. Its positive representations of disability, spotlighting the discrimination faced by autistic individuals, was widely heralded as departing from previously negative stereotypes. Amid a global move toward inclusion driven by the disability rights movement, we undertake a biocultural approach to analyze representations of the embodied (autistic) mind/body in Extraordinary Attorney Woo. We consider how neuroscientific research has evolved and the implications of this evolution for representations of autism. We argue that deep-rooted stereotypes about autism continue to influence progressive media representations of disability and that a deeper acknowledgment of those stereotypes is needed to achieve equitable and sensitive representation.

Adapted Physical Activity Scholarship: Evolving From Corrective to Inclusion and Anti-Ableist

Kinesiology and adapted physical activity (APA) share a common history rooted in the medical model approach to physical activity, movement, and the human body. The evolution of APA was influenced by these early roots and later by special-education legislation, sensory-motor perspectives, inclusion movement, and the disability-rights movement. Originally identified as adapted physical education, APA emerged as a professional field and an academic discipline. Since the 1950s, the research and scholarship has increased and cuts across the specialization areas (subdisciplines) of kinesiology. The multidisciplinary nature of APA scholarship has also reached beyond the discipline of kinesiology informed by disability studies and sociology. Reflection about APA and kinesiology reveals the ableist nature of the medical model, which informed early professional practice and scholarship. Thus, it is critical that APA and kinesiology engage in anti-ableist scholarship to better understand human physical activity and movement inclusive of individuals with disabilities.

Introduction to Disability and Antiableist Health Care: A Pilot, Student-Led Module for Preclinical Medical Students.

Physical medicine and rehabilitation physicians often care for disabled patients, who comprise America's largest marginalized population. Despite medical students' and physicians' discomfort with caring for disabled patients and the pervasiveness of ableism in health care, medical education lacks disability-focused education. Kern's approach to curriculum development and disability community input were used to design a three-part, elective curriculum for first-year medical students. Part one introduced disability models and language. Part two described how to perform a comprehensive history and physical examination for a disabled patient using ADEPT-CARE. Part three provided an overview of disability history and the disability rights movement. The curriculum's goal was to improve students' attitudes regarding disability health and self-perceived knowledge and confidence in caring for patients with disabilities. The curriculum was evaluated through presurvey and postsurvey. Students favorably reviewed the curriculum. One hundred percent of students ( n = 21) agreed or strongly agreed that the curriculum improved their knowledge of disability health, increased their perceived confidence in caring for patients with disabilities, and enhanced their medical education. There were no statistically significant differences in students' attitudes toward patients with disabilities after curriculum completion. Our asynchronous module provides one potential curriculum for increasing preclinical medical students' self-perceived knowledge of disability health.

Designing for justice: How universal design theory could bolster health professional education research

Universal design theory (UDT), emerging from the field of architecture and infused with the politics of the disability rights movement, refers to a way of planning for and responding to diversity that can be harnessed for research design. We argue that UDT is a critical tool for researchers in health professional education (HPE) to realise their obligations for social accountability, justice, equity, diversity and inclusion in HPE. This paper introduces researchers to UDT and demonstrates how it could inform research design in HPE. We provide an in-depth, socio-political explanation of the theory and why it is important for HPE research, and we elucidate ways it can inform HPE research design and process—including the tensions that may arise in activating these principles alongside some research paradigms and conditions of the field. We seek to highlight the potential of universal design to transform research practice to advance justice.

Disability education and implications for genetic counselor training.

The genetic counseling (GC) community has faced criticism about the duality of promoting patient autonomy while also advocating for individuals with disabilities. This study assessed the attitudes of the disability community and GCs to identify content that should be included in GC disability education and evaluate the landscape of GC disability education. Members of the disability community and GCs completed an electronic survey distributed through electronic listservs and partnering organizations. A total of 672 responses were analyzed from both the disability community (n = 596) and the GC community (n = 76). Members of the disability community noted differences in GC comfort level discussing different aspects of disability with GCs being perceived as being very knowledgeable about medical aspects 71% of the time versus 49% of the time when discussing social/lifestyle aspects of disability. This discordance was reflected in GCs reported comfort level in discussing medical aspects (89%) and social aspects of disability (65%) during a session. Most GC respondents (71%) felt they received adequate knowledge during their disability education and variation was reported in the execution of disability education by training programs. Disability education content recommendations from the disability community and GCs included emphasizing four key aspects of disability: medical, social/lifestyle, lived experience, and the disability rights movement. Respondents of both cohorts stressed the inclusion of and exposure to persons with disabilities in disability education to understand the lived experience of persons with disabilities. The disability community identified additional disability education content to be included such as empathy training, family hardships, and mental health. The results of this study have practice implications and provide a foundation for training expectations to ensure future GCs possess the necessary skills to improve the quality of services provided to families and persons with disabilities.

“Nothing About Us Without Us”: Analyzing the Potential Contributions of Lived Experience to Penological Pedagogy

This paper explores the necessity and considerations of integrating Lived Experience Criminology (LEC) into penological pedagogy. It critically analyses the underutilized, yet transformative, potential of lived experience of the CJS to enrich academic curricula and further inform student understanding, particularly in Australia. Drawing on initiatives such as the Inside-Out Prison Exchange Program, Learning Together, and Walls to Bridges, the paper highlights how such programs operationalize LEC’s dimensions—particularly Persistent Experiential Narratives (PEN) and Common Experiential Narratives (CEN)—to build criminological knowledge. However, the need for cautious and ethical expansion of these programs is emphasized, considering potential objectification of people with lived experience of the CJS. The paper advocates for greater inclusion of lived experience perspectives in criminology curricula, underscoring the value they could bring to the preparation of future practitioners, the design of robust research, and the advancement of penological epistemology. Additionally, it stresses the importance of context, locality, and specialization within LEC, and the ethical considerations inherent to these pedagogical approaches. The paper concludes by calling for a stronger commitment from academia towards inclusion and empowerment of individuals with lived experience of the CJS, echoing the maxim “Nothing About Us Without Us” from the disability rights movement. The paper posits that significant strides in the CJS and academic discipline are achievable only through meaningful and sustained involvement of these individuals.

Women and the Federation of Disability Organizations in Malawi: Experiences of Struggle and Solidarity

Women with disabilities are among the most marginalised members of the Federation of Disability Organizations in Malawi (FEDOMA), facing particular challenges related to sexual and gender‐based violence and family/home life; women with disabilities are both abused because of their embodied womanhood and denied many socially‐valued “traditional women’s roles.” However, women within Malawi’s disability rights movement transgress the boundaries of these social restraints. In this article, I share stories of women disability activists, drawn from an interview and participant observation‐based project, co‐designed with FEDOMA to explore the experiences of grassroots activists. In telling their stories, the women of FEDOMA detailed processes of empowerment and change, combatting their own and others’ experiences of violence, abuse, and exclusion. I discuss the ways in which women activists embodied roles that altered their communities and built activist networks, supporting one another in expressing agency, strength, and solidarity. Their work highlights a politics of care that emphasises the “traditional” and the “modern,” incorporating individualised human rights discourse into an ethics of community caring and expanding this collective inclusion to the oppressed and marginalised. In focusing on the experiences of Malawi’s women disability activists, we gain a more complex understanding of mechanisms of marginalisation, resistance, and empowerment.

Disability Justice and the Americans with Disabilities Act: An Opportunity for Social Work.

According to the Centers for Disease Control and Prevention, over 61 million Americans have a disability, which translates to about 26 percent of the national population. The most common types of disability are physical (13.7 percent), or those that impact mobility, and intellectual (10.8 percent), or those related to cognitive processing. The Bureau of Justice Statistics has reported that 32 percent of people in state prisons and 40 percent of people in county jails have at least one disability, rates that demonstrate alarming disproportionality. Yet the history of the disability rights movement, the impact of the Americans with Disabilities Act for people with disabilities who are involved with the criminal justice system, and the implications of disability justice and critical disability theory for the field of social work are not well understood. The purpose of this article is to review these under-recognized topics and offer recommendations for addressing this neglected area of social work education, research, policy, and practice.

Intersectionality and social movements: a comparison of environmentalist and disability rights movements

ABSTRACT Demands for intersectional organising have long been a priority for Black feminists, and in recent years it has also been taken up by a wide variety of social movement actors operating across different contexts. Analysing and actualising intersectionality as a strategic and generative tool presents a series of theoretical and empirical challenges and opportunities. In this article, we think through and about intersectionality in relation to two different social movements in the UK: the environmentalist movement and the disability rights movement. Discourse analysis undertaken of a range of groups’ websites indicate that intersectional frameworks undergird some aspects of the ways that these two movements organise. We reflect on the ways that intersectional discourse is taken up by some groups within both movements to situate their politics. We also examine how intersectional frameworks shape some groups’ framing of the issues under their ownership, and who the labour of intersectional organising falls to: (more often than not) women of colour.

RIGHTS OF PERSONS WITH DISABILITIES IN INDIA: PROVISIONS, PROMISES AND REALITY

The paper Rights of Persons with Disabilities in India: Provisions, Promises and Reality traces the historical evolution of the disability related legal provisions in India briefly, in the context of the United Nations mandated Declaration on the Rights of Disabled Persons (1975) and the Convention on the Rights of the Persons with Disabilities (CRPD,2007). In such a scenario, the paper attempts to arrive at an understanding of the extent to which the provisions have been implemented. To this extent, the researcher conducted a series of telephonic interviews with several parent-advocates who have been vocal about disability rights in India. An extensive interview was also conducted with a parent-activist, Mr. A.Joshi, who has been at the forefront of the disability rights movement in India with his personal as well as professional engagements at a national level and who was able to provide a critical understanding of the systemic roadblocks in the implementation of the legal provisions. The paper particularly tried to look at the implementation of the provisions of the Rights of Persons with Disabilities Act (RPwD Act), 2016 and the proposed dilution of the National Trust Act (NTA), 1999 that was hailed by many as a landmark Act for its provision of legal guardianship of individuals with special needs (after 18 years of age). A critical reading of the press coverage on these issues as well as the extensive interview with Mr. Joshi threw significant light on them. In conclusion, although several remarkable disability laws have been passed in India, till date, due to systemic inadequacies and loopholes, the fissures between what could have been achieved and what has been achieved, are quite wide. A more concerted effort needs to be taken towards strengthening the dialogue between various stakeholders in the disability sector as well as place pressure on the powers that be, to acknowledge the gaps inherent in the system.

Politics and Differently Abled Persons in India in the 21st Century

Politics is a major and integral part of society. Every individual who is physically impaired is also involved and affects the political process. The concept of a disabled person has modified into a differently abled person as disability depends upon the almighty’s decision or not in our hand so it’s never be neglected. India is a democratic and developing country; differently-abled people are also a part of the people. Without their political inclusion and participation, we cannot imagine the development of a democratic state. People possessing the nationality of a country are called citizens. All citizens have the right to say about, regulate, or access their own country’s progress and prosperity. The main motto of this presentation is to identify the Political Rights of Indian citizens. It also identifies the Political Rights of differently-abled persons in the 21st century. As Article 29 of UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) said, all people with disabilities have the same right to take part in politics as other citizens. Convention says that governments must be confirmed about the accessibility of differently-abled persons in the election process. This means: Making sure that the ways of voting and the voting papers are easy to use and understand. Being assured differently-abled people can vote secretly as other citizens can. During the vote, every Govt. can allow an assistant with each differently abled person to express their own choice or to elect easily. This study describes the Electoral Rights of physically and sensory disabled persons and related to this it examines the effectiveness of “The Right to Vote for All” in India. Numerous discrimination differently-abled people have witnessed as they are considered ‘inferior’ and ‘abnormal’ and received uneven treatment. Although the Disability Rights Movement in the 1970s said about equality, the differently abled still faces discrimination to take part in elections. In our country, the exclusion of differently-abled people from political participation takes place at all levels in different ways. The present investigation finds out the issues of differently abled person’s political participation and explores how to cope up with this for political and electoral inclusion.

Creating, archiving and exhibiting disability history: The oral histories of disability activists of the Carleton University Disability Research Group

Building a disability archives that is accessible is an ongoing challenge. At Carleton University in Ottawa, Canada, this work began a decade ago with the formation of a modest collection of scholars interested in disability issues. The Carleton University Disability Research Group developed as a collective of scholars, graduate students, and non-governmental organisation workers from the fields of social work, engineering, history, library, and archives, including people with disabilities. Since 2013, it has worked to collect, archive, discuss and display histories of disability in Canada, using various media. This paper documents and analyzes the aspects of this work linked to information studies, from the role of archivists and librarians to the making of archives and exhibits with, for, and about people with disability. It presents innovative decisions, introduces unexpected benefits for all in the light of the project of a critical disability archival method and discusses the potential of universities as a site of practice. It takes its most recent project, the Oral histories of activists in the disability rights movement in Canada (1970–2020) as the main case.

”Gör plats!”

”Make room!” Concerning ableism, paternalism and the construction of dis/ability Within the social work profession, social vulnerability and social justice are central concerns. However, professional emphasis is on economic and social conditions and less on dis/ability, despite the fact that dis/ability is important, not only for services aimed specifically at people with dis/abilities, but the entire profession of social work is linked to dis/ability in various ways. The purpose of the article is to contribute to a deepened understanding of vulnerability in general and, in particular, the vulnerability of people with dis/abilities. An advertisement from the Swedish Public Employment Service’s campaign “Make room!” forms a point of departure for a theoretical discussion of how dis/ability is constructed. The article demonstrates how the advertisement is based on paternalistic and ableistic ways of thinking that connect dis/ability, gender, and race/ethnicity. Able-bodied perfection is regarded as desirable, while the deviant body is linked to deficiency and suffering. The article also deals with the critical discussion that followed the advertisement, which eventually led to the Swedish Public Employment Service withdrawing it. Finally, we argue in favour of a cripistemological perspective in social work. This means taking previously marginalized knowledge as a starting point and reformulate traditional perspectives. It also means seeking cross-border cooperation between social work and the disability rights movement as well as other social movements. Thus, the lived experience of vulnerability that can result from impairment and its effects, as well as the political vulnerability that arises due to lack of resources, are made visible, without vulnerability being interpreted from paternalistic and ableistic perspectives. Moreover, ideas of the normal body and the normal way of thinking and feeling can be

Visual Disability and the Pursuit of Normality in Preeti Monga’s Biographical Novel The Other Senses

For Ancient Greeks, beauty was a characteristic of individuals and actions that they considered to be morally good. Greek statuary and art in general project beauty based on the assumption that outward appearance reflects personal virtues (Tytler, 1982, p. 36). Pythagoreans, for example, held that ugliness expressed confusion and turmoil, and that beauty was a material expression of universal truth. In more modern times, and in many ways envisaging today’s materialistic societies, Kant expresses a certain perplexity that beauty is perceived primarily as a pleasurable response to exterior form (2000, p. 111). In this sense contemporary culture, with the increasing visual refinements of its graphic products and virtual reality, has set new metrics for defining the value of beauty. Our televisions, for example, broadcast images of heroes who are physically beautiful while being morally suspect and socially abrasive. The unstable value of beauty is reflected in literature. In Indian literature disability has been represented, but these representations have lacked significant scholarly diagnostic treatment. The Disability Rights Movement has recently begun to change this situation. This paper strives to examine a disabled individual’s struggle for integration through Preeti Monga’s autobiography The Other Senses. It also analyses how the disabled create subjective normality and the process by which they attain it. By tracing the roles of sexuality, dependency, and interpersonal relationships in the lived experience of Preeti Monga, this research aims to reveal the significance of the quest for normality in shaping personal identity.

Take Pity: What Disability Rights Can Learn from Religious Charity.

Disability rights advocates have traditionally denigrated charity as politically counterproductive and inherently demeaning. This article argues that this perspective mischaracterizes charity of a religious kind. Religious charity, I argue, must be understood immanently, through an exploration of the virtues cultivated in particular religious organizations. I consider two Catholic charities: L'Arche, a community for intellectually disabled people, and the end-of-life care facility Our Lady of Perpetual Help Home. At each organization, individual acts of charity are emblematic of an underlying virtue that I call caritas or charity-love. This transforms them into gestures that advance goals that are consonant with those of the disability rights movement. In the case of Our Lady, this is even true of pity, perhaps the most despised emotion of the disability rights tradition. But while disability rights advocates have characterized pity as essentially devaluing disabled people, at Our Lady, it is an emotion that freely circulates, undoing hierarchical distinctions between ability and disability, and even human and divine. This redefined notion of pity-which I term misericordia-can, I conclude provide a new foundation for disability politics, one that radicalizes the goals of the disability rights movement, while also positing objectives that go beyond legal compliance.

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.

175th Anniversary of the American Annals of the Deaf: Part III-1961 to the Present.

175th Anniversary of the American Annals of the Deaf: Part III—1961 to the Present Peter V. Paul The editorial for this issue is the third and final rendition of a celebration of the 175th anniversary of the American Annals of the Deaf. In this issue, I cover the period from 1961 to the present. Much as in the editorials in the two previous celebration issues (Paul, 2022a, 2022b), my initial primary focus was on articles covering various aspects of the development of language and literacy. However, here I have strayed from this original emphasis to discuss other interesting, perhaps groundbreaking articles. The time frame covered by this editorial, and by this special Annals issue, has been marked by stark economic and political events in America. These include the Cuban Missile Crisis, the assassinations of John and Robert Kennedy and Martin Luther King Jr., the emergence of the counterculture of the 1960s, the Vietnam War, the stock market crash of 1987, and the fighting in Iraq and Afghanistan—to name a few. Events that have affected the education and social welfare of individuals of color, those with disabilities, and others include the Civil Rights Act of 1964, the Education for All Handicapped Children Act, better known as Public Law 94-142 (and subsequently amended several times), the American With Disabilities Act, and Section 504 of the Rehabilitation Act. The period since 1961 has also seen the rise of inclusion and the disability rights movement, challenging the utility and effectiveness of special education programs and services and our long-standing perspectives on constructs such as disability and deafness. I could go on—think of the explosive impact of the Internet and the introduction of transformational digital devices (e.g., iPads, iPhones) and social media platforms. Oh yeah, Gallaudet University appointed its first deaf president in 1988. And I was proud to be selected the first deaf editor of the Annals in 2011. Range of topics There was no avoiding the challenge posed by the selection of articles for discussion and the few chosen for reprinting in this issue. Initially, I was intrigued by the titles and quick perusals of 146 articles. This was a smaller number than those I considered for the first celebration issue (194), and much smaller than the total contemplated for the second (338). Looking at issues from 1998 to about 2010, I was captivated by a few of the editorials by the previous Annals editor, Donald F. Moores, covering controversial and interesting topics such as demography (Moores, 2001a), teacher preparation (Moores, 2003), the No Child Left Behind Act (Moores, 2004), and residential schools (Moores, 2009). Several of his editorials on cochlear implants were also of interest (Moores, 2002, 2005, 2008–2009, 2010). Perhaps Moores’s approach and style of writing served as an inspiration for my editorials. [End Page 407] Looking at articles from the inception of my editorship in 2011 to the present, I found it difficult to select articles to read (again!) and discuss or to highlight as reprints. In fact, making selections for the 50 years from 1961 to 2011 was equally difficult because I had read and synthesized a number of articles on a range of topics—such as American Sign Language– English bilingualism, Cued Speech, the developmental differences between deaf children of deaf parents and deaf children of hearing parents, language and literacy development, lipreading/speechreading, signed systems, and vocabulary—in writing my own published works. I hope that some of my readers are familiar with my stances on these issues. Of course, I promise not to say anything more here about the qualitative similarity hypothesis (Wang & Andrews, 2014, 2015). As usual, the Annals contained information on a wide range of topics—not only the above-mentioned cochlear implants (pros and cons!), Cued Speech, inclusion, and digital technology, but also communication and signed systems, instructional television, intelligence (oh, the debates…), internal speech, locus of control, mainstreaming, mathematics, the purpose of science in the curriculum, signed language, speech and hearing issues, Visual Phonics, visual sequential memory, and on and on. Several issues of the Annals provided lists of speech and hearing centers, organizations and associations (National Association of the Deaf, etc...

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.

Quality assessment, inclusive community development, and collective learning: An institutional perspective from Germany.

This article reviews the German discourse on quality of life, quality assurance, and outcome measurement in services for persons with intellectual disabilities. Following institutional assumptions of path dependencies in organizational development, it is argued that concepts such as quality assurance must be understood in the context of the national support system development. For the Federal Republic of Germany, it can be noted that previous approaches to quality assurance of services based on measurement and evaluation tools have not been the drivers of innovation for inclusion. The driving forces behind reforms in the field of disability originated from the three angles of the social service structure (people with disabilities, statutory welfare agencies, and service providers). Policies of key actors were not part of a consistent reform strategy. However, the main elements of the inclusive philosophies of the disability rights movement became hegemonial and led to national legislation that prioritizes person-centered support arrangements in inclusive settings. With regard to governance arrangements in Germany and the idiosyncrasies of local disability fields, it is suggested that there should be a conceptualization of quality assurance in a multilevel approach as “local quality dialogues for collective learning.”