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- Convenors:
-
Kelly Fagan Robinson
(University of Cambridge)
Theresia Hofer (University of Bristol)
Mark Carew
Send message to Convenors
- Stream:
- Identities and Subjectivities
- :
- Julian Study Centre 2.03
- Sessions:
- Thursday 5 September, -, -, -
Time zone: Europe/London
Short Abstract:
This panel addresses social, material, spatial, communicative & epistemological barriers for people with disabilities in & out of academia. It focuses on: critiques of existing barriers; heterogeneity of disabled life-ways; & highlights the value of disability-centric modes of knowledge production.
Long Abstract:
This panel will address the social, material, spatial, communicative, and epistemological barriers that people with disabilities still frequently confront, both inside and outside of the academy.
Given the current international focus on global sustainable development, including via the Global Challenges research funding schemes, we seek to foreground the work that has yet to be done on non-normative ways of being in and knowing the 'world', particularly if/when disabled-centred epistemologies are side-lined within equality and alterity discourses.
Conceptual understanding is often dictated by pre-existing communication norms and standardised processes of knowledge-making, both reliant on and bound within institutional and procedural precedents. We seek to raise productive lines of flight through critiques that will lead to greater innovation and transformation of inclusive social and knowledge-making practices.
We welcome ethnographic and/or theoretical papers on enacted inclusion; epistemic injustice; language regimes and translation, broadly conceived; practical/logistical/financial access (to interpreters, note-takers, technology, inclusive architecture or environments); grassroots movements; or any other proposal focused on the broad diversity of the lived experiences of people with disabilities and the value of heterogeneous disability-centric knowledge production. We particularly encourage paper submissions relating to the Global South and by researchers with disabilities.
Accepted papers:
Session 1 Thursday 5 September, 2019, -Paper short abstract:
This explorative qualitative study,interviewed 15 post graduate students with diagnosed mental illness in South Africa. Results show that post graduate students expressed some positive but mostly negative issues to being supervised while they experienced a mental illness.
Paper long abstract:
Although there has been much research on the needs of students with more visible disabilities, the unique needs of students with invisible disabilities have received less attention (Mullins & Preyde, 2013). This is despite the point that students with so-called invisible disabilities are the fastest growing student population group. Psychosocial disability (or mental illness) is regarded as part of the invisible disabilities as they are less visible to the observer than physical, sensory or mobility disabilities.
Internationally there are very few studies looking at students' experiences with psychosocial disabilities at a university, particularly in a supervision context. This point is supported by Shor (2017) who states that there is little work looking at difficulties that students with psychosocial disabilities face when they are at universities. A recent study by Mutanga (2017) who carried out a synthesis literature review of students with disabilities experiences in South African higher education, found no studies that looked at psychosocial disabilities in this context.
This explorative qualitative study, using a semi-structured interview schedule, interviewed 15 post graduate students with diagnosed mental illness in South Africa. Results show that post graduate students expressed some positive but mostly negative issues to being supervised while they experienced a mental illness. Issues of stigma, self-disclosure, relationships, and power were highlighted. Recommendations about the future were also discussed.
Paper short abstract:
Students with 'hidden' disabilities are often diagnosed at university. Our UCL-Chile-New Zealand study looks at the co-construction of hidden disabilities by students and university staff, institutional agendas and epistemic attitudes, and impacts on diagnosis, disclosure, help-seeking and support.
Paper long abstract:
Internationally, laws and statutes mandate inclusion for the disabled in all areas of life. Universities worldwide incorporate support services for students with special needs, which may include an orientation week before the first term begins. However, many disabling conditions are typically only diagnosed in people in their 20s, thus while students are already at university. This complicates the planning and provision of support services, particularly for the large and varied group of invisible or hidden disabilities, that is, disabilities with few visual clues that may therefore be unapparent to others. Students with hidden disabilities often face considerable challenges in navigating the demands of university social and academic life. Compared with students without disabilities they tend to have worse self-esteem, psychological problems, feelings of loneliness and isolation and lower expectations within and after education. They are at higher risk of dropping out of study or taking longer to complete their course. I am beginning research with collaborators in New Zealand and Chile to improve support for these students. London and New Zealand operate established inclusivity mandates for disability-friendly education, while Chile has only just introduced such mandates, based on the UK model. Our focus is the co-construction of hidden disabilities in higher education through communication between students with hidden disabilities, university-associated clinicians, disability services and academic staff and impacts on diagnosis, disclosure, help-seeking and support. Particular topics of interest are institutional agendas and epistemic attitudes. This talk will be illustrated by real examples. The speaker has two disabled children at university.
Paper short abstract:
This paper discusses the complex nature of exclusion in mental healthcare and investigates efforts by Re:Create Psychiatry to develop interventions that overcome barriers between mental healthcare professionals and the people who use their services.
Paper long abstract:
Mental healthcare is deeply divided. Some clinicians see it as their duty to provide effective and safe treatments based on clear observations of service-users and high-quality evidence from trials. Other clinicians say this overstates the relevance and authority of research but find their viewpoint largely erased. Service-users often describe a more total exclusion. They are obliged to accept the hermeneutical limitations of the limited clinical lexicon. They are placed in asymmetrical and unreciprocal relationships, with nothing of value to exchange but the disclosure of distress.
Re:Create Psychiatry is a project based in London that seeks to enable medical and psychiatric professionals to better understand and collaborate with people who have lived experience of mental ill-health, and for service-users to in turn better understand medical professionals. To achieve this, they curate discussion groups, creative dialogue workshops, and public events during which service users and professionals come together to share their reflections - and listen to others' - about the contemporary system's virtues and frailties.
Our paper will provide ethnographic material describing the work of Re:Create. We will use theory and anthropological literature to help us understand the complex nature of exclusion in mental healthcare and to think through how exclusion and disability intersect; we assess why it appears so difficult to integrate service-user input into care and try to envisage what genuine dialogue might look like.
Paper short abstract:
It analyses the policies of quotas for people with disability in the labour market. It problematizes the centrality of psi experts and care relations in this policy process and the de-subjectivation nature of biomedical diagnoses, highliting the subjective transformation of people with disability.
Paper long abstract:
This paper aims to analyse the processes of social inclusion policies, which were driven by the promulgation of Law no. 8,213/91 of quotas for people with disabilities in Brazilian business organizations. Focusing on the experiences of people with autism, its main focus is the understanding of the policy's systems of thought, their effectiveness on breaking the barriers people with disabilities confront in this spaces, and the effects of these policies on the construction of people's subjectivities. The ethnography findings of the research that inform this paper allowed to problematize the centrality of psi experts and care relations in the effectiveness of this policy and the de-subjectivation nature of biomedical diagnoses. It was also possible to perceive that the quota policy, despite encountering various resistances and barriers to its implementation, finds as a greater effect the empowering and subjective transformation of people who benefit from it. On the other hand, the research evoked the sanitizing and individualizing rationalities and moralities present in the construction of an unreachable ideal of "worker", propagated in business daily life; the need to rethink the negative character attributed to "care relationships" in the inclusion processes; and the need to take into account the specificities of the diagnosis of autism in the processes of obtaining rights. This paper sheds light on how the various actors and rationalities present in the inclusion processes act in the social construction of new subjects, relationships and social sensibilities in Brazil.
Paper short abstract:
How and to what extent do deaf Tibetans challenge a model of disability that they experience as one of charity and pity? This question is discussed in the broader context of the UN Convention of the Rights of People with Disabilities, the role of state and local disability advocacy in Tibet.
Paper long abstract:
The UN Convention of the Rights of People with Disabilities (CRPWD, 2008) aimed to inspire and realise a movement away from viewing people with disabilities as objects of charity, medical treatment and social protection, towards viewing them as full and equal members of society, with human rights. It is the only UN human rights instrument with an explicit sustainable development dimension. The People's Republic of China (PRC) was one of the first to sign the convention. Since the 1980s, through the China Federation for People with Disabilities (CDPF) the country already had a powerful institution with branches all over the PRC to promote disability-related work. However, the deaf Tibetans in Lhasa who I have worked with had only limited (if any) knowledge of the UN Convention, or even of fundamental national rights and laws (labour, employment, family) affecting their everyday. Myriad barriers to education, sign language use, fair employment and equal pay, to civil rights etc. were also in place. Cadres and employees of the local CDPF branch, the Tibet Disabled People's Federation (TDPF), are constructed as "representatives" and "advocates" of Tibetans with disabilities, yet it quickly became apparent that Tibetans with disabilities considered them otherwise. The model of disability that many experienced in dealings with the TDPF was one of charity and pity. This paper looks at how and to what extent deaf Tibetans challenge this model.
Paper short abstract:
In this paper we will discuss how our academic research on disability and international development in five African countries has benefited hugely from active collaboration with advocates, practitioners and policy makers in these areas, including most importantly people with disabilities themselves.
Paper long abstract:
Disability-centric production of knowledge is crucial yet often unacknowledged facet that warrants consideration within research partnerships on disability-inclusive development. In this paper, we will discuss how our ESRC-DFID funded academic research on disability and international development in five African countries has benefited hugely from active collaboration with advocates, practitioners and policy makers in these areas, including most importantly people with disabilities themselves. Building such partnerships is not solely good practice, but is particularly important when working on disability issues, as the clarion call of the disability movement, 'nothing about us without us,' attests. But this is not just a slogan as without the active and critical engagement of disabled people- as researchers, participants, advocates - the evidence gathered would not have the same impact. This paper will discuss experiences of research partners from work in Kenya, Liberia, Sierra Leone, Uganda and Zambia. It will examine the challenges such partnerships can bring, who is speaking on behalf of who, and how the inclusion of people with disabilities can progress beyond tokenistic representation and empowerment.
Paper short abstract:
This essay provides a new platform from where I attempt to extend the recent anthropological discussion of affect in relation to the capacity of memory, cognition and language by reconsidering affective enmeshment.
Paper long abstract:
Should ethics come before research, care practice and ontology? If your mother asked staff to call her daughter at twenty past five on an early autumn morning, what 'should' you do as researchers? Is it possible to conduct ethnographic research in everyday life where there are always contingent and unexpected ordinary encounters taking place between research participants and non-participants without interrupting their daily life and violating ethical commitments? Is there an alternative way that we as anthropologists can make the doings, actions and utterances of people living with dementia heard and acknowledged without impetuously interpreting and translating them as abnormal and pathological? In this article, I suggest a creative, ethical and mutually beneficial way of doing ethnographic research with people living with dementia in an institutional setting by turning these ethical, epistemological, methodological matters into a cartographic ethnography with particular attention to affective dynamics of bodily practices. Critically developing Deleuze, Guattari and Deligny's cartographic approach, I demonstrate affectively underpinned encounters and relationality in the condition of co-dwelling. The affective cartographic ethnography allow us to approach and understand not only how the individual remaining capacity can have affects, but also such affectively embedded and embodied practices are actively involved in everyday life beyond the presence of knowledge and memory. Accordingly, this provides a new platform from where I attempt to extend the recent anthropological discussion of affect in relation to the capacity of memory, cognition and language by reconsidering affective enmeshment.