Exploring how the social model of disability can be re-invigorated: in response to Mike Oliver

In his 2013 article in Disability & Society, Oliver recommended that the social model should either be replaced or re-invigorated. I argue here that the social model’s current emphasis reflects the social conditions in which it was introduced, and that the model’s impact on disabled people’s lives would increase if its emphasis was to more accurately reflect the current social conditions in the geographical regions in which it is applied. In order to help foster its re-invigoration, I ask five questions for discussion on the way forward for the social model. I identified my questions through examining published writing on the scope of the social model and on the model’s relationship with other models of disability.     

Rights to research: utilising the Convention on the Rights of Persons with Disabilities as an inclusive participatory action research tool

For those labelled disabled, disability rights are synonymous with human rights, not merely a sub-category. In this paper we consider disability rights in terms of the right of people labelled with learning difficulties to be actively involved in research. Examples from an inclusive participatory action research project undertaken in partnership with people labelled with learning difficulties demonstrate how the Convention on the Rights of Persons with Disabilities was operationalised using photo-voice to facilitate accessible research, analyse findings and promote social change.     

Doing it differently: emancipatory autism studies within a neurodiverse academic space

Abstract

In the current research climate, in which many autistic and autism communities are increasingly calling for a move towards collaborative forms of research, we consider how a loosely formed epistemological community may serve to challenge ‘business as usual’ in the academy. Mindful of the need to move beyond theory, we use this experience to concretely consider how knowledge about autism and neurotypicality can be meaningfully (co)-produced, and made available both to the research community and also to autistic and autism communities. Here, we use our own co-production of this article to explore how autistic experience may trouble normative meanings of academic knowledge production. We also consider the limits and possibilities of a neurodiverse research collaboration to reflect on ways in which a loose epistemological space may serve to contribute to knowledge about both autism and neurotypicality, adding to debate around collaborative research.     

Barriers to inclusive education in Greece,Spain and Lithuania: results from emancipatory disability research

Inclusive education is a key aspect of the European Disability Strategy 2010–2020. The aim of this study is to give voice to three local organisations of people with disability and for people with disability in Spain, Lithuania and Greece, discussing the EU policy for inclusive education in relation to personal experiences and national policies, as part of the Able’20 European project. The points of view of 58 young people with disabilities were collected through the ‘theatre of the oppressed’ approach as an emancipatory disability research tool, aiming at the empowerment of young people with disabilities and their organisations. The voices of young people show the presence of physical barriers alongside more challenging cultural and institutional barriers, which strongly limit access to inclusive education, showing an opposite trend to the EU policy, and overshadowing the social model of disability.     

Autism self-advocacy in the Netherlands: past,present and future

This article presents the results of participatory research into the roles and practices of autistic self-advocates in the Netherlands, and the outcomes of their activities. The article discusses the history of Dutch autism self-advocacy, situating it within the history and practices of self-advocacy internationally and the socio-cultural context of the Netherlands. Particular reference is made to Judi Chamberlin’s model for building effective self-advocacy organisations. Key findings include the scope of significant achievements, and the identification of barriers to efficacy in the areas of governance, personal and organisational capacity, relationships with other organisations, and coalition-building. The research concludes by considering what practices could serve to build increased capacity and efficacy, based on the experiences of these and other self-advocates.     

Deconstructing Disability and Neurodiversity: Controversial Issues for Autism and Implications for Social Work

Disability is a socially constructed concept that can be viewed from either a medical or a social perspective. Autism, a developmental disability, can be viewed from the medical model of disability or through a new perspective brought forth by the autistic community and aligning with the social model termed neurodiversity. Using the medical model and a lens of neurodiversity, we can deconstruct the controversial issues surrounding autism and provide insights for social workers and other professionals working with the community of the disabled.     

Making activism a participatory,inclusive and developmental process: a research programme involving mental health service users

Abstract

Understanding real-world experiences and issues is a priority for research funders, yet there are challenges in directly engaging with people for evaluation and investigation of the professional services they receive. Much professional work takes place within institutional restrictions, arising from legislation, policy and local practices. Collaborative research is therefore complex but relevant for improving services. This research programme started in 2002 with focus group research, led by occupational therapists based in a local National Health Service trust and a university, followed by eight further projects including a Photovoice project. This programme and our perspectives from reflections suggest we do not always know who we are, what we want or who cares about research outcomes, but it is important to embrace the potential of activism, to energise and focus people for positive action, wherever they are based.     

Recognition as a framework for ethical participatory research: developing a methodology with looked after young people

This paper reflects on a project which involved the authors working in partnership with a working group of looked after children and young people established by a small unitary local authority to develop a pledge defining what support, services and care looked after children can expect from them. The authors aimed to develop an approach which ensured that the young people’s voices were heard and also that the well-being of those involved as participants remained at the centre of the process throughout. We argue that Honneth’s theory of recognition, which identifies three forms of recognition as important to ensure that human beings feel assured of their dignity or integrity – in brief love, rights and solidarity – offers a useful framework for achieving this. The main principles which emerged were: (i) building the research around the young people’s existing relationships, (ii) respecting the group’s decisions and (iii) honouring the views expressed.     

Unanticipated ethical issues in a participatory research project with individuals with intellectual disability

The conduct of a participatory research investigation into the everyday literacy of adults with intellectual disability within the context of a PhD thesis highlighted issues related to the ethics of participatory research and the need to revisit and reconsider ethical guidelines around working with individuals with intellectual disability. Tensions were identified between participatory research ideology and the reality of research experiences, with additional issues arising due to disability in the first author.     

Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

Reflections on doing participatory research in health: participation,method and power

The author has reflected on her experience in facilitating three participatory research (PR) projects to identify key issues surrounding participation, method and power. The three PR projects in health, all undertaken in the same region in southeast Australia, assessed the needs of women who have experienced breast cancer, evaluated an Indigenous healthy lifestyle programme and developed and documented a model of coordinated care by a consumer group. In particular, the three participatory projects suggested that participants do not always want to maximise their own participation and may prefer external researcher involvement – relationships, confidentiality, anonymity and time‐impacted perspectives of participation. In one study, quantitative methods were selected and time and previous knowledge of research shaped participants' selection of method. In the projects, power relations were complex and issues of negotiation, inclusion, quality of research, agendas, roles and integrity are discussed. The lessons learned here are that participatory researchers can be open to differing levels of participation and methods while also comfortable with sharing decision‐making in research, even if it alters the research outcome.     

We did it together: a participatory action research study on poverty and disability

This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work.     

‘It is like being put through a blender’: inclusive research in practice in an Australian university

Abstract

How can university-based researchers committed to a position of solidarity with, and activism alongside, people with disabilities maintain such a stance in the metric-driven environment of the modern university? How can the academy ensure there is the opportunity for people with disabilities to contribute to production of the knowledge in which they have most at stake, in a wider environment where access to basic services for people with disabilities is precarious? In this article we draw on our experience as a team of university-based and community-based researchers with and without disabilities to reflect on these questions, using a framework of reflexive solidarity to consider practical strategies for strengthening the relationship between disability activism and the academy.     

Navigating the ethical maze in disability research: ethical contestations in an African context

Despite changes in how disability is viewed, ethical requirements for disability research have hardly changed. Some ethical clearance procedures, processes and practices still consider persons with disabilities as not able, creating unease among researchers and research participants with disabilities themselves. This paper considers five ethical contestations arising from research in the area of disability in an African context: positionality, vulnerability, signed consent, anonymity, and research committee composition. We argue that ethical requirements in practice are still largely based on a medical model of disability and propose that culturally sensitive social and human rights models should influence disability research ethics.     

The politics of joking: narratives of humour and joking among adults with Asperger’s syndrome

The purpose of this article is to analyse how humour and narratives about humour are used in a natural group of adults with Asperger’s syndrome. Narratives about humour and use of humour in the group are analysed from a discursive psychological perspective, informed by insights from both disability studies and critical autism studies. The setting of the research is ethnographic fieldwork in an educational setting in Sweden. In the paper, I show the use of three storylines among a natural group of people with autism (PWA) when talking about humour: the storyline of humourless PWA that dominates within Swedish society; and two alternatives, a storyline of alternative humour among PWA and another storyline in line with the social model of disability, of neurotypical humour or disabling humour. When invoking these two alternative storylines, PWA challenge both the humourlessness storyline and the lack of social accessibility within mainstream neurotypical settings.     

When they call me cripple: a group of South African adolescents with cerebral palsy attending a special needs school talk about being disabled

Central to the experience of disability are social and political forces and discourses which position people in particular ways. Little is known about the experiences of individuals with disabilities living in low-income and middle-income countries. We investigate the lived experience of a group of South African adolescents with cerebral palsy. In-depth interviews were conducted with 15 adolescents with cerebral palsy. Data were analysed using interpretive phenomenological analysis. The participants position themselves between the medical and social models of disability, in a liminal space between ‘normal’ and ‘disabled’, but do not identify with either group. They describe a ‘hierarchy of disability’ and position themselves in-between more serious sensory impairments and less serious emotional and learning disabilities. Being disabled is associated with being taken care of, infantilised and being powerless. Consequently they aspire to achieve independence and autonomy, and face danger, which are seen as signifiers that they are not disabled.     

Why do working relationships not change? The need for a new approach to disability partnership research and social change

Although researchers, service providers, and clients are determined to improve partnerships within disability services, a lack of partnership persists. Using our research as a case study, we reflect on three limitations of common research methods and social change techniques in this area. We suggest that typical approaches struggle to move beyond taken-for-granted ideas, common-sense solutions, and established ideology in the field of disability. Consequently, they often fail to reveal important barriers to collaboration, identify innovative solutions, or initiate meaningful improvements in partnership. We propose a new approach to partnership research and reform grounded in a pragmatic model of social change and argue that projects based on isolated or simplistic data, majority-rule decision-making, simple and efficient planning, and restricted inside perspectives (where storytelling is limited) must be complemented by observational studies, socio-cultural analyses, and critical investigations. In short, we must understand why working relationships do not change to improve disability services.     

The use of photovoice with people with intellectual disabilities: reflections,challenges and opportunities

Photovoice is part of the growing use of participatory research approaches with people with intellectual disabilities. In this paper we explore the process, opportunities and challenges associated with the use of photovoice with people with intellectual disabilities, illustrated through a research project entitled ‘This Is Me’. Photovoice requires researchers to share power and control in the research process and to tolerate uncertainty. Large investments in time and money are also required. These challenges, however, are outweighed by the benefits of the use of photovoice with people with intellectual disabilities. Photovoice creates a space where people with intellectual disabilities can meaningfully participate and exert control in the research process, and as such is an empowering experience. As a participatory research approach, photovoice is accessible and offers the opportunity for people with intellectual disabilities to develop new skills, confidence and experience inclusiveness in their own terms.     

Exploring how the social model of disability can be re-invigorated for autism: in response to Jonathan Levitt

Levitt argues that the social model of disability needs to be re-invigorated, potentially by adapting the tool for separate countries. The social model has been successfully applied for some disabled groups in the United Kingdom. However, the social model is not implemented for neurodivergent labels such as autism, through the negative language of autism, causing severe problems for autistic individuals’ daily lives. The social model can be re-invigorated for autism, removing social barriers by changing non-autistic people’s attitudes towards autism through ensuring positive language of autism, preventing the categorisation of autism and fully enacting The Autism Act 2009 and The Equality Act 2010.     

Autism grows up: opportunities for adults with autism

A disability is a natural part of human experience that should not inhibit one’s ability to experience independence, equal opportunity and economic self‐sufficiency. It is not known how caregivers of adults with a specific disability, an autism spectrum disorder, would frame these opportunities for their children living in the USA. This survey explored the needs of 143 families supporting an adult with autism and the opportunities afforded them in socialization, employment and residential living. The results of the study indicated a lack of available support for caregivers and limited opportunities for their family member with autism in the areas of socialization, employment and residential living, especially for those most severely affected with autism. Implications for societal change are presented.