Disability Culture Research Articles

Disability Culture in Jim Ferris’s Hospital Poems

The advent of disability or crip poetry in the last decades of the twentieth century has become a crucial literary trend in contemporary American literature equally profound and socially influential as protest poetry against ethnic, racial, class, or gender discrimination. Within a culture that is dominated by identity politics, categorizing diverse communities based on their ethnicity, color, gender, or religious affiliation, disabled poets found in poetry a powerful instrument to express their bitter experiences and the suffering of their disabled bodies. Challenging the confinement of marginalization, contemporary American poets such as Larry Eigner (1927–1996), Vassar Miller (1924-1998), Laura Ann Hershey (1962 –2010) Jim Ferris (1950- ), Kenny Fries (1960- ), and Jillian Weise (1981- ) have established a new poetics of disability as means of resisting ableism or ableist societies, which consider the non-disabled individuals as the only accepted normal living beings. Their poetic works function to provide a new perspective about disabled people, deconstructing the static cultural presumptions of bodily normalcy to create a disability culture. The purpose of this paper is to explore Jim Ferris’s poems of disability, selected from his Hospital Poems (2004), arguing that disability is a social and cultural imposition much more than simply a state of body functionality. The paper also endeavors to bear evidence that disability poetry is a sharp manifestation of artistic creation rather than social or personal desperation. A non-normative experience of the disabled individual is to be discussed as an essential factor for constructing disability culture.

National disability strategies as rights-based cultural policy tools

ABSTRACT A growing attention to cultural participation of people with disabilities has been propelled by the entry into force of the UN Convention on the Rights of Persons with Disabilities (CRPD). Being strictly connected to the implementation of the CRPD, the focus on cultural participation of people with disabilities has accrued outside the remit of national cultural policy. This article carries out a thematic analysis of national disability strategies across 27 Member States of the European Union plus the UK and explores the extent to which these strategies can be considered rights-based cultural policy tools. It identifies four themes recurring across those strategies: enhancing accessibility of cultural heritage, cultural institutions and cultural content; supporting persons with disabilities as creators of culture; awareness-raising about cultural participation of persons with disabilities; and protecting disability identity and culture. It then discusses the measures linked to these themes that national disability strategies adopt. On the whole, this article argues that national disability strategies can be, to varying degrees, considered cultural policy tools, and display significant rights-based elements. It concludes with reflections on the broader implications of those findings for cultural policy.

Cultural safety as a foundation for allyship in disability arts

The practice of allies – the non-disabled producers, directors, curators and facilitators who support the work of disabled arts and media makers – has not been subject to dedicated analysis. In this article, we argue that cultural safety, respect, and trust is a precursor to good allyship in the creative industries. We outline factors that influence feelings of safety or non-safety for disabled arts and media makers, and the way the legacy of the medical model makes it difficult for many arts and media workers to appreciate and enact enablers of safety as part of an allyship relationship. Education through reports and training sessions is not enough to ensure would be arts allies can establish cultural safety. What is required, we argue, is direct experience of how disabled artists and long-term allies enact cultural safety through the disability space, time and relational concepts central to disability arts, culture, and aesthetics. POINTS OF INTEREST There has been little research on the work of allies in art and media industries Arts allies are defined as the non-disabled policy makers, producers, directors, and facilitators who support the work of disabled arts and media makers Arts allies often focus on logistics, infrastructure, and systems (e.g. adding ramps, hearing loops, interpreters, or other adaptations) to make arts and media projects/workplaces more accessible to disabled artists Allies must also consider cultural safety as part of their support of arts and media projects/workplaces. Cultural safety recognises that disabled people have a shared identity, community, and culture, based on a shared history of oppression, shared lived experience, and shared language to describe that experience, and projects/workplaces that do not respect this are alienating Reading reports, attending events, and participating in conversations is not enough to establish knowledge of disability identity, community, and culture We consider how would-be allies can acquire the exposure to disability culture in action required to create cultural safety, respect, and trust in their allyship relationships with disabled arts and media makers

Inclinations

Inclinations is an audio-described, 7-minute, site-specific, disability dance on film followed by a video discussion between three of the disabled artist-researchers. Throughout this project, we embraced a research-creation methodology to engage with the research question: How can we fully embed intersectional disability justice, not only as a theoretical lens, but also, as a methodological imperative? This work centres the concepts of disability culture and disability generativity, and purposefully diverges from more popular traditions of physically-integrated dance in favour of disability dance. We demonstrate and discuss how this choice—alongside various filmic practices—seeks to decentre the ableist gaze, normalizing narratives, and the ubiquitous non-disabled referent. Other methodological considerations enacted and discussed in this work include centring access aesthetics, consent, care, disability justice principles, and questions of power in every aspect of the creation process.

Reclaiming disabled creativity: How cultural models make legible the creativity of people with disabilities

The field of creativity studies underrepresents—even excludes—creators who have disabilities. The underrepresentation partly reflects an approach that pathologizes disability. Disability as a pathology or marker of ineligibility makes the contributions of people with disabilities invisible or illegible to creativity research. However, disability operates as a marker of membership in a larger disability culture. Considering disability and creativity as cultural phenomena locates a means for including disabled creators in creativity studies. Cultural models describe creativity in terms of groups sharing values, experiences, and resources. People with disabilities participate in subcultures (e.g., deaf communities) and/or larger cultures (i.e., disability culture). Disability cultures encapsulate shared experiences and values as well as resources. In the following article, I pair three propositions from cultural creativity models with evidence from creators with disabilities to demonstrate that (a) members of disability culture experience the world in ways that generate creative expression, (b) encountering a world designed for abled bodies incites the creativity of disabled people, and (c) disabled and abled people collaboratively create. However, not all methodological approaches effectively include creators with disabilities. Qualitative approaches suit best when the researcher practices reflexivity and allows creators with disabilities the right to manage their own representation within the project.

Quick Trust and Slow Time

In the last decade, the field of Disability Arts has been recognised as a powerful source of aesthetic innovation. Yinka Shonibare has described it as ‘the last remaining avant-garde movement’ (Bragg, 2007), where artists with lived experience of disability produce new combinations of form, content and politics, which engage spectators in provocative reflections on the way we relate to each other in the public sphere. Despite a range of policies, plans, protocols and funding programmes to support disabled artists and collaborations between mainstream producers and disabled artists, the statistics – at least in our context in Australia – suggest most disability art still occurs outside and alongside an industry that struggles to include these artists. In this article, we draw upon findings from a series of workshops with disabled artists around Australia, conducted as part of the ARC funded Disability in the Performing Arts in Australia: Beyond The Social Model project – known colloquially to its collaborators and participants as ‘The Last Avant Garde’ project (https://lastavantgarde.com.au) – to propose a new approach. We find that while provision of logistical access (ramps, hearing loops, interpreters) and ideological access (stories, characters, discourse and language) is critical, so is methodological access, which embodies disability culture in training, rehearsal and production processes. Disabled artists use crip culture, along with relational space and time to negotiate what happens in disability arts and culture production practices and work through desire, fear, vulnerability and reciprocity to rapidly establish trusting collaborations. It is inclusion of disability culture relationships and concepts, as much as ramps and inclusive language, that makes a practice feel safe for disabled artists – and this, we argue, is what the mainstream sector has to learn and what the disability arts sector has to teach about improving the inclusivity of the creative industries.

Activating the arts in death: What are the cultural implications for MAiD?

This discussion paper attends to subcultural production emerging at the intersection of Medical Assistance in Dying (MAiD), death, disability, and other forms of precarious life. We think with disability arts, that is art created by disabled, mad, sick, and ill people that springs from the experience, politics, and culture of disability (Frazee, 2008) and plays an important role in advancing disability rights and justice. We consider how this form of cultural production animates diverse and intersectional representations and political perspectives in ways that are invitational rather than didactic or prescriptive. By engaging three Canadian disability performance art pieces that activate “crip theory” critical perspectives, we consider how these subcultural productions both indirectly support and extend disability rights endeavours to challenge the implementation of MAiD legislation in Canada. We highlight how each of these works creates space for thinking about the relationship of death and dying in nuanced ways that promote disability life and vitality in a post-MAiD context, without slipping into ableist tropes.

WeThe15, Leveraging Sport to Advance Disability Rights and Sustainable Development

#WeThe15 launched at the Tokyo Paralympic Games. It aims to mobilize global partners to level the playing field for the 15% of the global population living with disabilities. This paper examines how current policy, human rights and development objectives seek this inclusive change. It explores how sport and the media, both popular components of culture globally, are vehicles for impacting positive change for individuals and society. Researchers conducted analyses of mainstream media coverage across the US, UK, Latin America, and the Caribbean (LAC) of the 2016 Summer Paralympics. This was taken as a proxy to popular culture or public perception of disability. Results found considerable use of inspiration porn and non-inclusive language across media outlets. The US media led in raising awareness and promoting a cultural shift. Focus groups in Latin America examined athletes’ use of their platforms to identify and overcome barriers and promote disability rights. Athletes reported access barriers to sport across infrastructure, culture, school, environment, and sport itself. They are willing to use their voice to advance inclusion. While work is needed, para-sport has potential in the policy context and culturally significant media platforms to promote human rights and sustainable development for all people with disabilities.

The emergence of a paradox of assimilation: an analysis of Olympic and Paralympic athletes’ Instagram posts

The Olympics and the Paralympics are two of the largest multi-sport events worldwide that aim to represent social movements. The Games and the movements could be influenced by the widespread reach of their athletes’ social media. Thus, this study examined if Olympians’ and Paralympians’ Instagram posts reflected their respective Movements. A coding scheme was developed based on the Movements to analyse the Instagram posts of Olympians and Paralympians. The Paralympians may be assimilating to Olympian/able-bodied ideologies regarding sport. While assimilation in athleticism, sponsorship and sport participation may be positive, as it promotes athletes with a disability as elite, assimilation in the category of advancement may have negative consequences. At the initiation of the Movement, achieving recognition as elite athletes needed to be prioritized. However, the results of this study indicate advancement needs to be prioritized to avoid forgetting the Paralympics as a broader movement and to maintain disability culture.

“Good morning, Twitter! What are you doing today to support the voice of people with #disability?”: disability and digital organizing

ABSTRACT Understanding Twitter by individuals and organizations to raise awareness and give voice to the disability community provides important insight into digital discourse around disability. This study examines #disability tweets shared during National Disability Employment Awareness Month in October 2018. Sourced and cleaned, English language tweets (n = 12,963) were analyzed through a mixed-methods approach. As the title of this paper, a tweet from our dataset, suggests, Twitter discourse reflects disability activism and culture as it exists globally. This work highlights important methodological considerations for differentiating the ways individuals and organizations utilize Twitter and highlights the importance of qualitative analysis in this regard.

Using simulation to educate students about the culture of disability.

Using simulation to educate students about the culture of disability.

Anatomists: New members of the disability advocacy team

What would you say if we told you that there is a group of faculty at virtually every health professions school who (1) are knowledgeable in the wide variation of body shapes, sizes, and ability level; (2) are skilled in teaching concepts of form, function, and altered function; and (3) work with students at the very beginning of their training, often with nearly 100 hours of face time? Perhaps you'd say, “Please introduce me to these magical people!” Well, we would like to introduce you to anatomists, occupants of a role in medical education as old as medicine itself. Anatomists are experts in how the body works and sometimes works differently. Anatomists are the keepers of the language of the body. And as the two of us have recently learned, we are scientists and educators who are well positioned to support a positive disability culture in health science education.

#failbetter

Recalling Beckett's treatment of failure ( Three Dialogues, 1949; Worstward Ho, 1983), this article considers ‘fidelity to failure’ as a performative and political issue. In dealing with both the aesthetics and ethics of Beckett's failure, the article is informed by recent publications and events within the field ( Kenny ; Morin ; Maprayil; 2020 ). These interventions build upon a body of literature on Beckett ( McMullan, 1994 ; Calder, 2001 ; Anderton, 2016 ; Thomas, 2018) and culture ( Bersani and Dutoit, 1993 ; Ridout, 2006 ; Bailes, 2011 ; Halberstam, 2011 ). The article examines the phenomenon of failure within Beckettian production and wider ethical implications surrounding the (mis)appropriations of ‘failing better’. Having established the uses – and misuses – of this phrase, the article proceeds in three interlinked parts: a) aesthetic failure in Beckett's creative practice through to his legacy in experimental theatre and popular culture; b) performance more broadly, including intersections with disability culture and queer studies; and c) performative interventions in public discourse, from Brexit in Europe to the 2016 US Presidential Election as well as social movements such as Black Lives Matter.

On disability culture, performing arts, social theatre and the practice of beauty

This paper discusses performing arts in general and Social theatre in particular as art practices that most promote disability culture. Few significant examples of differently able performance artists are considered before analyzing the principles of Social theatre and the experience of Isole Comprese Social Theatre School (Florence, IT). From the propositions of American psychologist James Hillman, the school founded its teaching method on the practice of beauty, also defined as a poetic device serving as an antidote to contrast preconceptions, prejudices, stereotypes and stigmatizations that disable people often suffer in society.

Tactile comics, disability studies and the mind’s eye: on “A Boat Tour” (2017) in Venice with Max

ABSTRACT Positioned at the intersection of disability studies and urban comics studies, this article explores the artistic form, content and social engagement of the tactile comic ‘A Boat Tour’. Though the comic’s credited author is Max (a.k.a. Francesc Capdevila Gisbert; Barcelona, 1956-), it was nonetheless developed through a collaborative process as part of the Catalan contribution to La Biennale di Venezia. Using both braille and a form of haut-relief braille-like texture, the comics sensory representation of a boat tour experience is significant on two levels: first for its contributions to a transnational disability culture and its general avoidance of the problems common in disability representation; and second for its innovations within the tactile comics form. These innovations are explored in the context of scholarship on the Iberian comic, the wordless and tactile comic, and accounts of visual impairment understood as a social construction. In particular, the work of Georgina Kleege, including her recent book More than Meets the Eye, demonstrates that the distance routinely established between visual art and the experience of visual impairment is itself an ableist construction.

Art, Disability, and Pediatrics: Applying a Disability Studies Framework

The Artist in Residence at UCSF Benioff Children’s Hospital Oakland offers an arts program that is deeply engaged with the field of disability studies. By moving beyond an exclusively medicalized model of disability, hospitalized children and adolescents are situated as experts on their own lived experience. Artists, art therapists, and pediatric healthcare professionals can afford young people more avenues to engage in creative dialogue with topics related to disability arts and culture. These concepts are highlighted through three examples: stop-motion animation, closed-circuit television show, and art exhibitions that feature disabled artists.

Ordinary Extraordinary Activism: Student-led filmmaking in disability studies

Abstract In this article, we, as disability studies educators in Toronto, Canada, reflect on our interpretations of a student group's call to 'people' disability culture. This request tasked us with mapping disability culture in Canada, and representing it through the arts-based approach of new disability documentary. We produced five student-directed films, Ordinary Extraordinary Activism, that bridge theory with lived experience by profiling activists whose lives involve participating in disability culture. Here, we describe how our work supported and transcended the affirmative model by drawing on intersectionality and Disability Justice. We critically consider the aesthetic and representational tensions of producing films under crip time. Through this writing, we reflect on the three-year process of filmmaking as a gesture of online pedagogy and analyse three out of five films.

THE ROLE NGOS IN EMPOWERING PEOPLE WITH SPECIAL NEEDS TO INTEGRATE SOCIALLY AND ENVIRONMENTALLY

In his study of Social and Environmental Empowerment for People with Special Needs, researchers reached several results, including: low status of people with special needs in Egyptian society, and their suffering from many social and psychological problems where it was noted that disabled did not obtain many rights and services compared their regular peers. Double examples of existence of sufficient job opportunities, even within framework of 5% of job opportunities, according what is stated in law. In event that they work in their jobs or jobs. It increases suffering of people with special needs. researchers presented a group of people with special needs, including: Supporting activities and societies of civil society in field of care and employment for people with special needs. Professional; provide people with special needs. Suffering from difficulty of social life in first place. study used a sample of (90( males and females who benefits from organisation and its services achieve social and environmental integration. idea of research is based, according introduction study, on process of integrating and activating role of people with special needs within their local community. researchers asked about roles that society in all its systems and institutions can play provide people with special needs with knowledge, attitudes, values and skills that enable them make such participation and accept society for them. research idea was based on fact that human development is development of action on one hand, and development of interaction on other hand; that is, human development must include development of human and social capital at same time. The study aimed integrate people with special needs within society, and change prevailing culture of disability, by identifying roles that members of society and its institutions can contribute achieving social normalization with this group and their acceptance, with aim of reaching policies and mechanisms that work integrate them in all development issues. The Study Problem: researchers intended concept of social empowerment as: to provide people with special needs with various knowledge, directions, values and skills that qualify them for active positive participation in various activities and events of human life maximum extent that qualifies them for their capabilities and capabilities, in addition changing culture of society towards disabled and disability from a culture of marginalization Empowerment culture. The concept of people with special needs was expanded include many social groups other than those with special needs (physical or mental). There is a disability (mental - political - legal - economic), indicating that people with special needs are disabled for reasons, some of them are genetic, and some are environmental due a car accident - injury Work - poor service before pregnancy and during childbirth - also includes culturally and politically disabled, and gifted, because they have a special need in dealing. He defined disability as: the loss, marginalization or limited participation in activities, activities and experiences of social life at a similar level for ordinary people, as a result of obstacles, and social and environmental barriers. The researchers posed several main and sub-questions in its study, most important of which are: roles that society in all its systems and institutions can play provide people with special needs knowledge, directions, values and skills that enable them integrate into activities of social life, along with several sub-questions about nature of awareness of community members For people with special needs, and perception of community members deal with people with special needs, possibility of developing a positive view of role of people with special needs, forms of social care provided for people with special needs, and ways enable and integrate people with special needs into society and take advantage of them.

Disability Ethos as Invention in the United States’ Twentieth and Early Twenty-First Centuries

This article posits that disability activists routinely present a disability “ethos of invention” as central to the reformation of an ableist society. Dominant societal approaches to disability injustice, such as rehabilitation, accessibility, and inclusion, may touch upon the concept of invention; but, with ethotic discourse, we emphasize disability as generative and adept at producing new ways of knowing and being in the world. We identify an “ethos of invention” as driving early resistance to socially constructed “normalcy”, leading the push for cross-disability alliances to incorporate intersectional experiences and propelling the discursive move from inclusion to social justice. Through our partial re-telling of disability rights history, we articulate invention as central to it and supporting its aims to affirm disability culture, reform society through disabled perspectives and values, and promote people with disabilities’ full participation in society.

Contextualizing Future Health: A Parent and Resident Discuss Down Syndrome.

When I saw an e-mail with the subject line “Pediatric Resident Interested in Down Syndrome,” I was intrigued but skeptical. As the parent of Henry, an 11-year-old with Down syndrome, I look for opportunities to learn about the latest research and health care recommendations, but I am also wary of medical approaches that diminish the personhood of people with intellectual disabilities. I was pleasantly surprised to find that the sender was less interested in etiology or treatments for Down syndrome than in studying the social dimensions of health. She had read an article I wrote about my son’s love of the Muppets. In the vibrant world he shares with the Muppets, Henry finds comfort and a sense of belonging; there is no disability because nobody is perfect, and difference is the norm.1 This resident realized the value of looking at patients as individuals embedded in families and lived environments, and she wanted to treat my son and me (his mother but also an English professor with a long-standing interest in disability culture) as collaborators rather than as research subjects. This was the promising beginning of my ongoing dialogue with Katharine Press Callahan, a small portion of which is represented below. As a pediatric resident pursuing neonatology, I have often wondered about the lives of patients beyond the NICU and what genetic findings can and cannot foretell about patients’ futures. Teaching about Down syndrome centers on acute health concerns, but we receive little information about living with disabilities during medical education. We learn that Down syndrome is caused by trisomy of the 21st chromosome, with consequences that … Address correspondence to Katharine Press Callahan, MD, Division of Neonatology, Children's Hospital of Philadelphia, 3401 Civic Center Blvd, 2NW53, Philadelphia, PA 19104. E-mail: kpresscallahan{at}gmail.com