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- Convenors:
-
Mary Wickenden
(UCL)
Maria Kett
- Location:
- FUL-107
- Start time:
- 10 September, 2015 at
Time zone: Europe/London
- Session slots:
- 3
Short Abstract:
The lives of disabled people are under-researched both in anthropology and global health. Despite much theorising about and changes in conceptualisations of disability, mainly in the global north, the topic is poorly integrated into global health discourse. The panel aims to redress this imbalance.
Long Abstract:
The lived experiences of disabled people have rarely been investigated from anthropological or global health perspectives. When they have been a focus, it is often assumed that disability is a purely health or medical issue and emphasis is usually placed on exploring the impact of impairments (differences in body or mind), rather than on broader aspects of people's lives. Disabled people themselves say that their concerns are more likely to be about ontological matters related to the nature of difference and the myriad of ways in which they experience stigma and social exclusion, as well as about more prosaic aspects such as being denied equal access to a range of mainstream services such as health and education or to employment, leisure and community involvement.
Anthropologies of disability have begun to explore core aspects of being human such as: identity, body and mind sameness or difference, self versus others' perceptions, the concept of 'normality', relationships between impairment illness health and wellbeing, caring independence and dependence, as well as life-course dilemmas including antenatal screening, euthanasia and the judgements about quality of life. However, these have almost exclusively been examined in global north contexts. There is an urgent need for in-depth analysis of the lives of disabled people in the global south and a better understanding of how and if, theories of disability developed (largely) in the north may apply in a diversity of realities.
The panel welcomes papers on the themes above or other aspects of disability theory and practice.
Accepted papers:
Session 1Maria Berghs (De Montfort University)
Paper short abstract:
Using 'disability' we critically rethink what (global) public health interventions should encompass to be equitable.
Paper long abstract:
We no longer perceive 'disability' as a distinct category but need to understand it as more encompassing, affecting anyone, including those with pre-existing chronic conditions and mental health problems. This is why current international understandings are moving away from a strictly medical definition to one more in tune with how people experience impairment in their day-to-day life. Global public health research has been slow to accommodate these shifts. The use of inappropriate definitions and measurement tools - with 'disability' represented in terms of cost, risk or burden - along with a more general struggle to accommodate diverse social and cultural experiences, make it difficult to provide evidence on the kinds of public health interventions (RCTs) likely to be successful. RCTs are considered the gold standard in public health research. Public health interventions can improve population health and reduce health inequalities. Yet, interventions which are effective in the general population are often assumed to apply to people with impairments. However, the evidence for this is limited. Consequently, we know little about how interventions can connect with a (global) public health. We consider how 'disability' can allow us to critically rethink interventions (RCTs) from a global public health perspective.
Lisa Popelier (University of Antwerp)
Paper short abstract:
Development evaluators have paid relatively little attention to the inclusion of people with disabilities within evaluation processes. Their voices have often remained unheard in development evaluations despite the disproportionately high representation of people with disabilities among the poor.
Paper long abstract:
Very little is known on the implications of the development agenda on people with disabilities. This is partly due to the fact that disability has been ignored for a long time in general development discourse. However, another reason is the continuing disregard towards silent voices within development monitoring and evaluation (M&E) processes.
The nature and effect of including silent voices, particularly those of people with disabilities, in evaluation processes of development interventions are clearly under-researched. Stakeholder inclusion in M&E processes has gained support on the pretext that it might empower program recipients, ensure validity, enhance use, promote social justice and improve relevance and accuracy of the evaluation results. Thus far, however, there is little evidence to assume that inclusion in the evaluation process is inherently positive, empowering and at least not harmful. In addition, stakeholder inclusion seems to entail a trade-off with other evaluation standards such as feasibility. Even though validated, structured research tools have increasingly become available, involving marginalized stakeholders remains challenging due to potential unequal power relationships, additional resource investments (e.g. training), logistical difficulties, ethical concerns. Ensuring genuine participation might also require researchers and evaluators to share control, and recognize and tolerate uncertainty which may not always be allowed for by the evaluations' commissioners.
The theoretical framework presented in this paper will bring these elements together and will allow for a better understanding of the perceived benefits and feasibility of including people with disabilities in evaluation processes in order to foster disability-inclusive development and evaluation.
Marie Schnitzler (University of Liege)
Paper short abstract:
This article discusses a paradoxical injunction linked to the concept of autonomy in the field of disability. On one side, this discourse asks for the recognition of the capacities before the disability, but, it also emphasizes the need to acknowledge the disability and its daily consequences.
Paper long abstract:
Through ethnographic studies among people with physical disabilities in the Cape Flats, an impoverished area of Cape Town (South Africa), this article aims to discuss a paradoxical injunction linked to the concept of autonomy in the field of disability. Although the social model of disability is generally accepted in South Africa by the members of the government as well as the activists of the disability sector, this consensus hides deeper tensions between two different approaches, namely the idea of integration and the need to protect a minority. In a context highly focusing on people with disabilities' autonomies and capacities, these tensions lead to a paradoxical situation. On one side, the disability must be forgotten in the profit of individual abilities and capacities in the everyday life, but on the other side, there is a growing pressure to acknowledge the marginalization and stigmatization that people with disabilities experience. Some examples of this tension will be discussed at various levels. Firstly, the process of the elaboration of the disability act, still controversial in the South African disability sector, will be used to present the both approaches. Secondly, more personal examples from everyday life will be used to show how this tension is not only theoretical, but directly affects people with disabilities' life and social interactions. Finally, a local attempt to overcome this paradox will be introduced through the idea of diversity.
Diana Szanto (School for International Training)
Paper short abstract:
The objective of the paper is the reexamination of taken for granted ideas about disability in the Global South through the presentation of self-managed communities of polio-disabled people in Freetown, with a special attention to their health status and to their access to medical care.
Paper long abstract:
The paper puts disability in the Global South in a new perspective through the presentation of self-managed mixed communities organized and run by polio-disabled people in Freetown, the capital of Sierra Leone. Its main objective is to challenge mainstream representations describing people with disabilities in Africa as pariahs living on the margin of society. I intend to show that the people living in the polio-homes I studied form well-structured and resourceful communities, participating fully in the sociability, economics and politics of the city. I also wish to propose a re-examination of the taken for granted notion of discrimination and the unintended effects of anti-discrimination discourses. The notion of discrimination in development contexts often implies a connection between "harmful traditional beliefs" and mistreatment. In other words, ambiguous entities, like "society", "the people", or "culture" are made responsible for discrimination or marginalization of people with disabilities. I contend that the negative effect of this framework is that it conceals the structural violence of the post-war liberal state building, deliberately neglecting welfare institutions and public services. The result of a survey I conducted with 116 disabled and 250 non-disabled respondents show that in most domains of life disabled people (or their environment) possess considerable resources compensating for the impairment. One domain where disabled people suffer from undeniable handicap is access to health services. This handicap seems less the result of massive social rejection than that of the inadequacy of the health system with the needs of people with limited resources.
Virginia De Silva (Sapienza, University of Rome)
Paper short abstract:
In Tigray region, people with physical disability are called «gudat akal» that litterally means «damaged body». This paper aims to explore the local perceptions about different kinds of physical impairments and the differences in their management .
Paper long abstract:
ICF (International Classification of Functioning) of the World Health Organization states that disability is an «umbrella» term to define a functional difficulty either at an individual or social participation level.
The World Report on Disability estimates that in Ethiopia there are 15 million people with disability and that the disabling factors are numerous and varied. In this local context an anthropological approach to the focus of disability has to shed light on which kinds of physical impairments are perceived as «disabling» for the life of a person.
During my ethnographic fieldwork in the cities of Mekelle, the capital of the regional state of Tigray, and Wukro I collected life stories of people with disability to reflect about the different perceptions and the different management of disability. The analysis of this material reveals a «local» classification that shows axes that differ in some ways from the global ones. The acquisition mode of the disability, for example, is an important axis that determines the perception of the disability and its management.
A lot of social actors, from the family to governmental and private institutions, play a role in the management of disability and programmes range from physical rehabilitation to social «integration» of people with disabilities.
Trough the life stories of disabled people met on the field, I'll try to outline the different representations of disability, the different systems of «taking care» displayed by public and private institutions with the purpose of highlighting inequalities.
Carys Banks (University of Surrey)
Paper short abstract:
Social care support for intellectually disabled adults living in England is directed by statute aiming to enable people with freedom of choice and protection from harm. Through ethnographic exploration into support settings I hope to explore the tensions that exist between these two imperatives
Paper long abstract:
At what point, if at all, should a person with intellectual disability be prevented from making unwise decisions, and how much is this prevention a violation of their liberty or simply legitimate coercion with a view to keeping them safe? These questions, and the tension that sits at the heart of them, are the focus of my presentation. The tension emerges out of two central imperatives that have come to define contemporary social care support - individual autonomy and protection. Founded in the political philosophy of liberalism, which has defined the means by which a person achieves the 'good life', these imperatives became inculcated into social care support following WW2 and the recognition of societal responsibility to both care for and empower it's most vulnerable. Within mainstream social care this has established a politicisation of liberal practices that are realised through enabling people with a right to life in the community and to make choices independently.
Though there is acknowledgement of the inherent tension in the liberal notion of freedom - the need to balance choice with a responsibility to society - the law determines that this tension can be positively dissipated, empowering people with political and social control over their lives. Yet, within policy and everyday practice there is no real grappling with fact that individuals with an intellectual disability have varying levels of limited capacity for reason and reflection, and so determining whether they are subject to legitimate or illegitimate coercion is decidedly hazy.
Mary Wickenden (UCL)
Paper short abstract:
This paper explores the perspectives of disabled children in the global north and south, using data from them. It asks why they often experience exclusion and abuse within their families and communities and makes links with theory about identity, personhood, diversity and structural violence.
Paper long abstract:
Attitudes to disability vary cross-culturally but it is common for disabled people to be denied personhood, to be regarded as altogether different, sometimes as hardly human. Being 'different' seems to legitimise exclusion and the denial of human rights for the individuals concerned. Disabled children regularly experience at the very least: poor access to basic facilities and services (such as health and education) which are seen as essential for their nondisabled peers. More dramatically they are often excluded, bullied, abused and neglected both within their families and by their communities at large. They are members of two structural groups (children and disabled) who are often cast as a burden, vulnerable, helpless and as receivers not contributors in society. Thus they are at risk of and often experience structurally violent treatment from others.
This paper uses data from disabled children in the global north and south (UK, S Asia and E Africa) to consider their perspectives on their lives. It considers why being different is so challenging in many societies, drawing on theory about identity and personhood, and asks why difference attracts negativity, rejection and violence. Children with impairments are different in particular ways but they insist that these are less important than their status as citizens and children. They emphasise that they have more in common with their nondisabled peers than they have differences from them. Despite often being cast as vulnerable, they regularly resist such categorisation and show themselves to be strong, capable contributors.
Francesca Vaghi (University of Glasgow)
Paper short abstract:
Little has been written about disability in Mexico, although the issue has become increasingly visible in recent decades. Using the analogy of ‘disability worlds’ this paper explores the different local and global tensions that families encounter outside and within a charity care centre.
Paper long abstract:
Based on fieldwork conducted at a Mexican charity, this project seeks to answer the question: how do parents make sense of their children's congenital diseases in the absence of adequate health care and government support? The notion of 'disability worlds' is used to explore how disability and parenthood are negotiated in different local and global settings available to the families coming to the charity. It is argued that those forms of institutionalised oppression that still exist in Mexico-what is defined as 'structural violence'-play a defining role in these families' trajectories. Parents' accounts reveal that reproductive rights are often being compromised in the context of public health, and access to care and information for people with disabilities is still insufficient. Parents lamented that in Mexico there are no patients' associations, and that the government provides a limited amount of disability benefits. Looking at the available literature on disability in Mexico, it becomes apparent that human and civil rights are not central in the Mexican disability discourse. Yet, examining the charity's recent engagement with the UN's Convention for the Rights of Persons with Disabilities, it is pertinent to question whether the global disability narrative is applicable in, and useful to, the Mexican context. By using the analogy of the local and the global, inequalities experienced by children with congenital diseases, and their families, are explored both on a micro and macro level.
Camilla Hansen (Oslo Metropolitan University)
Paper short abstract:
Acknowledge discourse as practices, doings, activities and interaction between people, objects, environments, technology; disability becomes enacted as heterogeneous understanding.
Paper long abstract:
This paper investigate practices of disability in the context of enactment (Mol, 2002), interface (Latour, 2004) and reciprocity. Using ethnographic material from South Africa (2005-2008) these analytical concepts create an insight into the enactment of ability in disability among politicians, activities, entrepreneur with disabilities in post-apartheid South Africa. Moving between and with people, places, environments and objects, located both in rural areas and at national level, this paper describe new spaces of interaction, intra- activities situate disability knowledge in a particular historical, political and socio-economic context. New practices are been shaped: disability becomes ways of affecting others, articulated locally as sensitization. In the interface between disabled and able persons, learning to be affected by more and more elements emerge as an engagement for change. In this context, the enactment of disability appear in between persons, objects, technology and environments. These positions create new practices of participation where people with disability becomes the locus for these intra activities that reinforce change. The paper argue that such new knowledge can easily be overlooked or taken for granted locally, also by people engaged and shaping these new practices. These aspects strengthen the importance of study the enactment of disability both locally and globally, staring within practice, doings and activities. The methods used enable interaction to emerge through discursive practices. In such way, this paper contribute with a complex and heterogeneous understanding of disability from the South.
The research and fieldwork in South Africa was funded by Norwegian Research Council.
Aleksandra Kurlenkova (N.N. Miklukho-Maklai Institute of Ethnology and Anthropology, Russian Academy of Sciences)
Paper short abstract:
This paper suggests the affirmative model of disability to analyse experiences of visually impaired Moscow artists whose works open up ways to overcome social stereotypes and set forth a new, non-tragic view of the world of individuals with visual impairments.
Paper long abstract:
Disability studies have suggested several models for explaining disability: a medical model underlying biological distinctions between able-bodied and disabled people; a social model shifting the locus of responsibility from the impaired individuals to the restrictions of social and physical environment; and, recently, the affirmative model of disability which focuses on positive social identities. The later one developed in the heart of Disability Arts Movement and theorized by several UK scholars (J. Swain, S. French, C. Cameron) suggests a non-tragic view of disability, when an individual sees his/her impairment as an integral part of his identity and experience.
Inspired by the affirmative model I decided to look at how Moscow citizens with visual impairments involved on professional and amateur levels in different kinds of arts (playing instruments, singing, taking part in a drama group, painting with playdough) talk about their lives. I was eager to know what meanings arts have in their lives, as well as to what extent being successful in arts helps them develop their potential, overcome social barriers, as well as contribute to setting up a new affirmative (positive) model of people with disabilities in Russian society.
The data (2015) I'd like to present include analysis of ten in-depth interviews with visually impaired people doing arts in Moscow region, which reflect their views on existing relationships between the worlds of "able-to-see" people and those having visual impairments. My conclusions pertain to the potential of visually impaired Russian artists' works to change the current (predominantly, medical) model of disability in Russia.