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Disabling bodies of/and land: Reframing disability justice in conversation with indigenous theory and activism

JAFFEE, Laura
JOHN, Kelsey
2018

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A central claim of this paper is that the destruction of Earth through practices of settler colonialism is inextricable from the disablement of Indigenous ontology, peoples, and communities. The disablement of land/body as a tactic of settler colonialism has persisted for centuries and takes multifarious forms. By highlighting Indigenous struggles to protect Mother Earth and her sacred resources, we suggest that Indigenous ontology, specifically relationships to land (Deloria, 1972), challenges Eurocentric/settler disability theory at the epistemological level by rejecting the taken-for-granted dualism between the environment and (disabled) humans within (settler) disability studies. Indigenous ontology, and Indigenous peoples’ experiences of settler colonialism, belie a clear bifurcation of humans and the environment, or bodies and space. Land appropriation, resource extraction, linguistic genocide, forced removal, erasure, and devastation by settlers invariably wreaks havoc on the land, spirit, livestock, and bodies of Indigenous peoples. Rejecting logics of elimination and imagining alternative futures- in opposition to the capitalist state’s projection of futures devoid of disability and Indigeneity- is essential for realizing national and bodily self-determination for non-Indigenous disabled and Indigenous peoples in the present and into the future.

 

Disability and the Global South, 2018, Vol.5, No. 2

The role of indigenous and external knowledge in development interventions with disabled people in Burkina Faso: the implications of engaging with lived experiences

BEZZINA, Lara
2018

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This paper explores the significance of engaging with the lived experiences of disabled people in countries like Burkina Faso in order to implement long-lasting and beneficial development. It looks at the way disability was conceived of in pre-colonial times and how knowledge imported from the colonisers conflicted with, and continues to influence today, indigenous knowledge in Burkina Faso. Although Burkina Faso obtained its independence from European colonisers over fifty years ago, disability as a terrain for intervention continues to be colonised by international non-governmental organisations (INGOs) that frame their approaches in western models, which are not necessarily applicable in countries like Burkina Faso. In a context where the predominant view of disability is that of disabled people being an economic burden, many disabled people in Burkina Faso feel the need to prove themselves as economically independent; and yet development agencies often do not engage with disabled people’s voices when designing and implementing development programmes. This paper argues that there is a need to engage with disabled people’s lived experiences and knowledges through processes such as participatory video which create spaces where marginalised people’s voices can be heard and listened to by the development agencies that influence disabled people’s lives.

 

Disability and the Global South, 2018, Vol.5, No. 2

Transnationalizing disability policy in embedded cultural-cognitive worldviews: the case of Sub-Saharan Africa

HAANG’ANDU, Privilege
2018

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In 2013, the European Union (EU) mission in Zambia made a public statement about its financial support to the LGBTI community. In panic and fear, LGBTI leaders urged the EU office to withdraw the statement and encouraged other foreign missions to instead offer discrete support to the LGBTI community. This anecdote is illustrative of the experiential gap between geopolitical groups confronting a similar policy issue. For the EU, the rights of LGBTI persons are universally important; for the LGBTI community in the Zambian context, safety and discretion are more important. This paradox illustrates the challenges facing the transnationalizing of disability policy. How could we explain the fact that transnational disability actors have for the last two decades been trying to disseminate disability ‘knowledge’ and norms in Sub-Saharan Africa (SSA) without corresponding social policy and ideational success? This article examines this policy and ontological discrepancy. Advancing a constructivist argument, the article contends that transnational policy diffusion, largely built on colonial legacies of universalizing Western knowledge paradigms, has preoccupied itself with political institutional engagements at the expense of engaging contextspecific sociological and ideological factors, resulting in sterile legislative exercises. To develop a truly SSA-relevant disability policy infrastructure, the article proposes ideational bricolaging and translation, a constructivist process of carefully adhering to and negotiating with context-specific ideational factors that inform the disability experience in SSA countries.

 

Disability & the Global South (DGS), 2018, Vol. 5 No. 1

The nation’s body: disability and deviance in the writings of Adolf Hitler

BENGTSSON, Staffan
2018

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This article takes its starting point in the Nazi ideology as it appears in the writings of Adolf Hitler, and discusses how disability and the body can be understood in the context of Mein Kampf. The article underlines how disability and bodily infirmities, alongside race, featured significantly in Hitler’s demagogic message. Although the overall image of disability was related to a sense of threat – and a culture gone wrong – Mein Kampf also contains a mixed interpretation of disability as a phenomenon, in which different and opposing disability narratives took part in the construction and the image of the body as a national property.

Feeling disability: theories of affect and critical disability studies

GOODLEY, Dan
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2017

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This paper explores connections between affect studies and critical disability studies. Our interest in affect is sparked by the beginnings of a new research project that seeks to illuminate the lives, hopes and desires of young people with ‘life-limiting’ or ‘life-threatening’ impairments. Cultural responses to these young people are shaped by dominant discourses associated with lives lived well and long. Before commencing our empirical work with young people we use this paper to think through how we might conceptualise affect and disability. We present three themes; ontological invalidation in neoliberal-able times; affect aliens and crip killjoys; disability and resistant assemblages.

Disability, health and human development

MITRA, Sophie
October 2017

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This book presents new research on disability, health, and wellbeing in four countries (Ethiopia, Malawi, Tanzania and Uganda) . The primary focus is empirical. It also makes a conceptual contribution as it presents a new model of disability based on the human development and capability approach. It addresses four questions: 

  • How should disability be defined to analyse and inform policies related to wellbeing?
  • What is the prevalence of functional difficulties?
  • What inequalities are associated with functional difficulties?
  • What are the economic consequences of functional difficulties? 

Detailed data analysis using large-scale household survey datasets is combined with an interactional model of disability based on Amartya Sen’s capability approach.

 

DOI 10.1057/978-1-137-53638-9

 

First of book series: the Palgrave Studies in Disability and International Development

A conceptual framework to assess effectiveness in wheelchair provision

KAMARAJ, Deepan C.
BRAY, Nathan
RISPIN, Karen
KANKIPATI, Padmaja
PEARLMAN, Jonathan
BORG, Johan
2017

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Background: Currently, inadequate wheelchair provision has forced many people with disabilities to be trapped in a cycle of poverty and deprivation, limiting their ability to access education, work and social facilities. This issue is in part because of the lack of collaboration among various stakeholders who need to work together to design, manufacture and deliver such assistive mobility devices. This in turn has led to inadequate evidence about intervention effectiveness, disability prevalence and subsequent costeffectiveness that would help facilitate appropriate provision and support for people with disabilities.


Objectives: In this paper, we describe a novel conceptual framework that can be tested across the globe to study and evaluate the effectiveness of wheelchair provision.


Method: The Comparative Effectiveness Research Subcommittee (CER-SC), consisting of the authors of this article, housed within the Evidence-Based Practice Working Group (EBP-WG) of the International Society of Wheelchair Professionals (ISWP), conducted a scoping review of scientific literature and standard practices used during wheelchair service provision. The literature review was followed by a series of discussion groups.


Results: The three iterations of the conceptual framework are described in this manuscript.


Conclusion: We believe that adoption of this conceptual framework could have broad applications in wheelchair provision globally to develop evidence-based practices. Such a perspective will help in the comparison of different strategies employed in wheelchair provision and further improve clinical guidelines. Further work is being conducted to test the efficacy of this conceptual framework to evaluate effectiveness of wheelchair service provision in various settings across the globe.

Teachers’ Perceptions of Disabilities on the Island of Roatán, Honduras

SCHNEIDER, Cornelia
2017

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Purpose: Roatán, a small island in Honduras, is home to six ethnic groups. Due to financial constraints, many children have limited access to schooling. This article is a study on teachers’ perceptions of disabilities and students with disabilities and inclusive education on the island.

 

Method: Twenty seven teachers working in public and private schools, and schools funded by the World Bank, were interviewed in March-April of 2014 in order to explore cultural and social representations of disabilities on the island.

 

Results: The findings show that many of the teachers’ representations can be analysed under the lens of different models of disability - the medical model, the social model, and a religious-moral model. Inclusive education is perceived less as a means of including children with disabilities in the regular classroom, and more as a method of creating institutions to take care of their needs.

 

Conclusion: There is a strong intersection of poverty, post-colonialism and disability which makes working under an inclusive lens very difficult for teachers. The cultural norms influence ideas of normalcy and disabilities, and the blame is on parents for having children with disabilities.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

Troubling school toilets: resisting discourses of ‘development’ through a critical disability studies and critical psychology lens

SLATER, Jen
JONES, Charlotte
PROCTER, Lisa
2017

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This paper interrogates how school toilets and ‘school readiness’ are used to assess children against developmental milestones. Such developmental norms both inform school toilet design and practice, and perpetuate normative discourses of childhood as middle-class, white, ‘able’, heteronormative, cissexist and inferior to adulthood. Critical psychology and critical disability studies frame our analysis of conversations from online practitioner forums. We show that school toilets and the norms and ideals of ‘toilet training’ act as one device for Othering those who do not fit into normative Western discourses of ‘childhood’. Furthermore, these idealised discourses of ‘childhood’ reify classed, racialised, gendered and dis/ablist binaries of good/bad parenting. We conclude by suggesting new methodological approaches to school toilet research which resist perpetuating developmental assumptions and prescriptions. In doing this, the paper is the first to explicitly bring school toilet research into the realms of critical psychology and critical disability studies.

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

Inequalities in access to health care for people with disabilities in Chile: the limits of universal health coverage

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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We analysed cross-sectional data collected as part of the National Socioeconomic Characterisation Survey (2013) in Chile, in order to explore if there are differences in access to health care between adult Chileans with and without disability. The study included 7459 Chilean adults with disability and 68,695 people without disability. Logistic regressions were performed in order to determine the adjusted odds ratios for the associated variables. We found that despite universal health coverage, Chileans with disabilities are more likely to report worse access to health care, even when controlling for socio-economic and demographic variables, including age, gender and income. Specifically, they are more likely to face greater difficulty arriving at a health facility, obtaining a doctor’s appointment, being attended to in a health facility, paying for treatment due to cost, and obtaining necessary medicine. Both people with and without disability are more likely to face difficulties in accessing health services if they are affiliated with the public health provider, an indication of the economic factors at play in accessing health care. This study shows that universal health coverage does not always lead to accessibility of health services and underlines the disadvantaged position of disabled people in Chile in accessing health services. While efforts have been made recently to improve equity in health care access, disability in Chile poses an additional burden on people’s access to health care, emphasising the necessity for policy to address this perpetual cycle of disadvantage for disabled people.

Disability and social justice

MLADENOV, Teodor
2016

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This article explores the significance of disability for social justice, using Nancy Fraser’s theory of justice as a guideline. The article argues that the disability perspective is essential for understanding and promoting social justice, although it is often disregarded by critical thinkers and social activists. The article looks at three prominent strategies for achieving social justice under conditions of capitalism: economically, by decommodifying labour; culturally, by deconstructing self-sufficiency; and politically, by transnationalising democracy. The disability perspective reveals that decommodification of labour requires enhancement of disability support, deconstruction of self-sufficiency requires valorisation of disability-illuminated interdependence, and transnationalisation of democracy requires scrutiny of the transnational production of impairments. The article discusses each of these strategies in theoretical and practical terms by drawing on disability studies and Fraser’s analyses.

Exploring Conceptualisations of Disability: A Talanoa approach to Understanding Cultural Frameworks of Disability in Samoa

Picton, Catherine
Horsley, Mike
Knight, Bruce Allen
2016

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Purpose: The concepts of disability were explored from a Samoan cultural frame. The impact of disability conceptualisations on identity development and cultural inclusion were assessed through the Samoan language. The study also evaluated the extent of endorsement of global policy initiatives at a local level.

 

Methods: Through facilitating a Talanoa approach, which is a rich cultural tradition of sharing knowledge, space emerged for dialogue around the lived experiences of members of the disability community in Samoa.

 

Results: Incongruous conceptualisations of disability were identified as a contributing factor in the persistence of stigmatising attitudes and beliefs. Borrowing concepts and terms from moral, medical, and social disability models, this disparity of conceptualisation is reflected in Samoan disability terminology. It was also found that while global policy initiatives are generally politically embraced, they engage more effectively with the community when they areunderpinned by Samoan cultural ontologies.

 

Conclusion: The findings suggest that multiple ideologies regarding rights, capabilities and experiences, challenge the development of identity, self-worth, and inclusion. There is significant value in merging cultural concepts with a social disability model framework. It is important to future development that people with disability can express a sense of cultural identity without risking the right to inclusion and equality.

Discourses of service user involvement in meeting places in Norwegian community mental health care: a discourse analysis of staff accounts

YNNESDAL HAUGEN, Lill Susann
ENVY, Andreas
BORG, Marit
EKELAND, Tor-Johan
ANDERSSEN, Norman
2016

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In previous research, meeting places have been favourably addressed by service users, but they have also been contested as exclusionary. In this participatory explorative study, we sought to perform a contextual analysis of meeting places in Norway based on a discourse analysis of three focus group discussions with 15 staff members. We asked the following question: how do meeting-place employees discuss their concrete and abstract encounters with service users and their experiences? We focused on service user involvement, which was largely analysed as neoliberal consultation and responsibilisation. Service users were positioned as resisting responsibility trickling down and defending staffed meeting places. Social democratic discourse was identified in the gaps of neoliberal discourse, which is noteworthy given that Norway is a social democracy. This relates to global concerns about displacements of democracy. We suggest that meeting places appear to hold the potential for staff and service users to collaborate more democratically.

The medical inadmissibility of intellectual disability: A postcolonial reading of Canadian immigration systems

SPAGNUOLO, Natalie
2016

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This article builds upon existing critiques of Canada’s immigration system by focusing on the medical inadmissibility of young people labelled with intellectual disabilities. In considering how the Canadian state regulates applications for permanent residency, it explores discourses and practices of citizenship which invoke mutually-constituting identity markers such as disability and race. A close reading of case studies involving family applicants, demonstrates how immigration policies and legal systems frame the needs of young people labelled with intellectual or ‘profound’ disabilities as a burden to Canadian society. Individuals who were initially denied admission to Canada due to their diagnostic label, experience disability-related discrimination in different ways depending on the role of their perceived racial, gender, and class identities, among others. The individuals considered in this study navigate intersectional identities and ableist legal systems in their efforts to resist discrimination and win a review of their residency applications. This analysis will show that applicants are forced to work through the logic of medical assessment processes to favourably position their children within impairment hierarchies which rank intellectual disability as ‘too disabled’ to be admissible.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

Disability and armed conflict: A quest for Africanising disability in Uganda

BUSINGE, Patrick
2016

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There are three key revelations from literature on disability and armed conflict in the Global South. First, though disability is a relative term, models from the Global North are widely used irrespective of indigenous knowledges and contexts. Second, though disability is caused by colonial and post-colonial inequalities such as poverty, disabled people are often forgotten in poverty reduction programmes. Third, while many countries experience armed conflict, little is known about its effects on disabled people living in contexts of armed conflict. This realisation led to the aims of this study which were to: i) investigate how disability is understood in the armed conflict setting of Uganda; ii) to understand the experiences of disabled people in armed conflict settings; and iii) examine ways of improving the experience of disabled people in the Global South. Using a critical, constructivist and grounded research methodology, the study revealed the nature of ‘African disabilities’ and the challenges faced by disabled people living in conflict settings: displacement, dehumanisation, rampant poverty and neo-colonialism. Disabled people experience rejection in their communities and invisibility in the provision of services. Using literature as a dialogue partner, this study concludes that the ways in which disabled people are treated runs counter to many African beliefs on what it means to be human and live in a community. Consequently, it proposes a theory which contains critical knowledge on how the Africanisation of disability could be thought of and brought about in conflict settings.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 1

Exploring normativity in disability studies

VEHMAS, Simo
WATSON, Nick
2016

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Normativity is a concept that is often misapplied in disability studies, especially in ‘postconventional’ accounts, where the concept is conflated with ‘normal’, ‘normate’, or ‘standard’. This article addresses this confusion, explores the meaning and use of ‘normativity’, and presents some analytic tools to discuss normative issues of right and wrong. The article finishes by discussing examples where conceptual confusions result in confused normative judgments focusing in particular on agency, responsibility and moral status. The article argues that disability research should carefully consider the use of theories and empirical knowledge in the light of their ethical implications as well as the lived experiences of disability.

Labeling albinism: language and discourse surrounding people with albinism in Tanzania

BROCCO, Giorgio
2015

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This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.

Deaf identities in a multicultural setting: The Ugandan context

MUGEERE, Anthony B
ATEKYEREZA, Peter
KIRUMIRA, Edward K
HOJER, Staffan
2015

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Often located far apart from each other, deaf and hearing impaired persons face a multiplicity of challenges that evolve around isolation, neglect and the deprivation of essential social services that affect their welfare and survival. Although it is evident that the number of persons born with or acquire hearing impairments in later stages of their lives is increasing in many developing countries, there is limited research on this population. The main objective of this article is to explore the identities and experiences of living as a person who is deaf in Uganda. Using data from semi-structured interviews with 42 deaf persons (aged 19–41) and three focus group discussions, the study findings show that beneath the more pragmatic identities documented in the United States and European discourses there is a matrix of ambiguous, often competing and manifold forms in Uganda that are not necessarily based on the deaf and deaf constructions. The results further show that the country’s cultural, religious and ethnic diversity is more of a restraint than an enabler to the aspirations of the deaf community. The study concludes that researchers and policy makers need to be cognisant of the unique issues underlying deaf epistemologies whilst implementing policy and programme initiatives that directly affect them. The upper case ‘D’ in the term deaf is a convention that has been used since the early 1970s to connote a ‘socially constructed visual culture’ or a linguistic, social and cultural minority group who use sign language as primary means of communication and identify with the deaf community, whereas the lower case ‘d’ in deaf refers to ‘the audio logical condition of hearing impairment’. However, in this article the lower case has been used consistently.

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