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Guide to Conducting Research with People with Disabilities

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Guide to conducting research with people with disabilities (PwD)

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This guide is one of the outcomes of a year-long Economic and Social Research Council (ESRC) UK-Japan Connections grant project seeking to grow a network of social science and humanities researchers, and ensure they are disability aware and better able to investigate and make programmatic and policy recommendations around the use of disability and Paralympic sport (DPS) to positively impact upon the lives of people with disabilities (PwD) in Japan and the UK. This guide has been produced through collaboration between UK and Japanese researchers and non-academic stakeholders from the field of disability and Paralympic sport, informed by the experiences of both. This guide is available in open access format and is committed to promoting more participatory methodologies, especially focused on the involvement of PwD in research. As Parent (2016) has suggested, it is important that the voices and experiences of PwD are heard and ‘not to go beyond disability, as is too frequently proposed, but to go-along with disability and disabled people’ (p.530). This guide is not intended to be the only resource researchers and non-academic partners should consult when considering undertaking research on DPS, and we have provided a guide to further reading on methodologies, methods and ethics of research at the end of the guide. We do hope that this guide will provide researchers at different stages of their careers, and in varied cultural contexts, with helpful ideas and tools to ensure that their quality of research is enhanced.

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1. Theories of disability: a brief overview

1.1 Medical model of disability

1.2 Social model of disability

Within the medical model of disability, the general view is that the problems that face people with disabilities are the result of their physical and/or intellectual impairments and are independent of the wider socio-cultural, physical and political environments. Consequently, it appears to people with disabilities that the cause of many of their problems lie within themselves and their impairments, and these impairments are something that need to be medically ‘cured’ in order for people with impairments to take a full place within society.

According to Morris (1991), in recent years, many of those involved in the disability movement have argued against the perceptions of disability embedded in the medical model, which health and social services professionals (and the general public) tend to apply to people with disabilities. Disability activists have, therefore, developed a social model of disability, arguing that it is environmental barriers and social attitudes that disable. According to Devine (1997), social construction theory ‘seeks to explain the process by which knowledge is created and assumed as reality’ (p.4). In terms of disability and the use of the social model by disability activists to fight against the dominant perceptions of disability, based upon a medical model ethos, within society, Priestley (1998) claims its use has its roots in the work of the Union of Physically Impaired Against Segregation (UPIAS) (1976) and Vic Finkelstein (1980), both in Great Britain. These works ‘form the core assumptions’ for modern day contributors in this area (Priestley, 1998, p.80). Morris (1991) states that this perspective takes the view that if people’s attitudes were to change, and there was public policy that legislated that environmental barriers should be removed, then many of the problems associated with disability would disappear. This view is exemplified in the comments of Drake:

The individual

Problem

Problem

Impairments and chronic illness often pose real difficulties but they are not the main problems

Problem

Traditional view Disability is caused by

The individual

Focus of the medical profession

Physical | intellectual | sensory impairment

Is impaired | is the problem

Cure | alleviate the effect | impairment

‘Disablement lies in the construction of society, not in the physical condition of the individual. However, this argument is usually rejected precisely because to accept it involves recognising the extent to which we are not merely unfortunate but are directly oppressed by a hostile social environment.’ (Drake, 1996, cited in Imrie, 1997, p.263)

Society

Barriers

Barriers

Barriers

Social barriers Environment

Attitudes

Organisation

Inaccessible:

Prejudice

Inflexible procedures and practices

Buildings

Stereotyping

Services

Discrimination

Languages Communication

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1.3 Psycho-social model of disability

1.5 Internalised ableism

Imrie (1997) argues strongly against the social model. He claims that this perspective suggests that a change in the physical environment (access to buildings, etc.) can change the experiences of people with disabilities. However, such transformations alone will do little or nothing to destroy the underlying disablist values within society or the institutional structures within which people with disabilities are forced to operate. He claims that the reverse is, in fact, more likely:

Based on this almost ubiquitous perception of disability as a pathological issue leading to a digression from a socially expected physical norm, both non-disabled people and PwD within society are encouraged, through numerous sources, to internalise many of the perceptions of disability embedded within an ableist approach to disability. Consequently, despite challenges to this perception by disability activists via the social model of disability, it appears to some PwD that the causes of many of their problems lie within themselves and their own impairments (Brittain and Beacom, 2016). Marks (1999) claims that internalised ableism:

‘because such perspectives (social model of disability) de-politicise the very essence of “being disabled” as either an individual condition or one connected to the policy practices of policy institutions. Wider structural conditions are lost sight of, while the body is conceived of (if at all) as ephemeral.’ (Imrie, 1997, p.270) This attempt to include impairment within the overall understanding of disability and its impact within a society is known as the bio-social model. 1.4 Ableism

‘is not the cause of our mistreatment; it is the result of our mistreatment. It would not exist without the real external oppression that forms the social climate in which we exist. Once oppression has been internalized, little force is needed to keep us submissive. We harbour inside ourselves the pain and the memories, the fears and the confusions, the negative self-images and the low expectations, turning them into weapons with which to re-injure ourselves, every day of our lives.’ (p.25)

Closely linked to the social model of disability and in the context of PwD, ‘ableism describes prejudicial attitudes and discriminatory behaviours toward persons with a disability’ (Wolbring, 2012, p.78), which are related to one’s understanding of the ability, rights and benefits afforded to persons deemed ‘normal’. Ableism is, therefore, associated with norms and normalcy and the resultant imposition of normative values for maintaining the power of one group over another (i.e. those who best fit the construed norms uphold power over those who diverge from them). The two primary mechanisms through which this occurs are the ableist attitudes that nearly all people within society are socialised (to varying degrees) into (OHRC, n.d.) and an inaccessible environment (Nourry, 2018) that is generally designed with only those who most closely embody normative values in mind. These two, combined with the strong links between ableism and capitalism (c.f. Oliver and Barnes, 2012) underpin the economic, structural and psycho-emotional oppression encountered on an almost daily basis by many PwD.

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2. ‘Ways of thinking’ about PwD and research

‘In disability research, the positivist paradigm has operated on the assumption that disability is a deficit, a problem in the individual who must be rehabilitated...The positivist view holds that there is only one true reality and a careful application of the rules of observation, comparable to the methodology of the natural sciences, will produce the necessary theoretical constructs to predict and control events, to produce a “cure”.’ (Felske, 1994, p.182-183) The positivist approach to disability research, whilst still having many advocates, particularly amongst the medical profession, is now seen by most disability researchers as oppressive towards PwD (Stone and Priestley, 1996; Barnes, 1992). By this they mean that it treats each individual with a disability as an object and alienates them from the research process by denying the existence of their own subjective lived experiences within the social world. In contrast, interpretivist research paradigms, like phenomenology, have been viewed as more effective at representing the lived experience of PwD and foregrounding individual experiences. However, interpretative approaches have also faced criticism from disability researchers. For example, Oliver (1992, p.109) claims that the two major problems with the interpretative approach are that it ‘fails to fundamentally alter the social relations of research production’ and he also cites Reinharz (1985) in describing the interpretative approach as ‘the rape model of research’ in that the researcher makes a name for themselves by rendering a faithful account of the experience of disability and then moves on to new pastures whilst leaving the research subjects in exactly the same social situation as they were in before the research began. Oliver (1992) offers a critique of both positivist and interpretivist paradigms for creating a false distinction between an ‘objective’ researcher, with ‘expert’ knowledge and skills, and the researched. He suggests that this gives too much control to the researcher to decide on what is researched and using what techniques. As an outcome of critiques of positivist and interpretivist approaches, in the UK and North America at least, the direction of research in disability studies in recent years has been towards more emancipatory forms of research: ‘In disability studies, it is asserted that disabled people should be considered experts in their own lives, needs and feelings, and, therefore, that those who do research with disabled people should allow disabled people to play an active part in shaping the course of research projects.’ (Davis, 2000, p.192)

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Adoption of an emancipatory approach within the area of disability research has led to the foregrounding of the social model of disability. This model, and the research that flows from it, presupposes that PwD experience inequalities as a result of their common experience of impairment. It is also based on a belief that ‘disability has some real collective existence in the social world beyond the existence or experience of individual disabled people... there remains an essential level of commonality in the collective experience of discrimination and oppression’ (Priestley, 1998, p.83). However, this approach is not without its detractors. Davis (2000), for example, claims that identifying PwD as being socially oppressed creates a discourse which: ‘talks of oppressed and oppressors as if they are homogenous groupings. By creating “them” and “us” groups these writers reduce the importance of people as social actors, reifying the role of structure and ignoring the diverse ways in which individuals and social groups relate to and resist such structures.’ (Davis, 2000, p.196) Related to debates about who the ‘them’ and ‘us’ of disability research refers to, the role of the non-disabled researcher in the area of disability research has been the subject of significant debate in the UK and North America, in particular. Even amongst those researchers working in the field of disability studies who have disabilities themselves, there are differences of opinion as to whether non-disabled researchers can make a productive contribution in this area or, indeed, whether they even have any right to be carrying out research into PwD. For example, Branfield (1998) questions the value of non-disabled researchers working in the field of disability studies on the grounds that their lack of self-experience of what it is truly like to be disabled makes them ill-equipped to accurately portray the experience. In contrast, Oliver and Barnes (1997) are more interested in making more opportunities available for disabled researchers to take part in research as they claim that, at present, the additional funding necessary for adapted equipment, administrative help, extra costs incurred for transport, etc. for disabled researchers is extremely hard to come by. Finally, Humphrey (2000) feels that the most important questions in this debate are who, what and why, in the sense that ‘who’ is doing the research in terms of their own personal characteristics matters less than: ‘”who” they are in terms of their own integrity and reflexivity, “what” kind of research they are undertaking in terms of their epistemological and methodological orientations, and “why” they are doing it in terms of their biographical and political profiles.’ (Humphrey, 2000, p.80)


For this guide, this final point is imperative. Why are non-disabled researchers interested in undertaking research on (or with) PwD and with what intended outcomes? If they are seeking to empower, emancipate and produce social change, then the disabled/ non-disabled binary is less important than their ethical stance. To that end, Stone and Priestly (1996) produced a six-point list of principles for non-disabled researchers to adhere to when researching PwD. These are: 1. The adoption of a social model of disablement as the epistemological basis for research production 2. The surrender of claims to objectivity through overt political commitment to the struggles of disabled people for self-emancipation 3. The willingness only to undertake research where it will be of practical benefit to the self-empowerment of disabled people and/ or the removal of disabling barriers 4. The evolution of control over research production to ensure full accountability to disabled people and their organisations 5. Giving voice to the personal as political whilst endeavouring to collectivise the political commonality of individual experiences 6. The willingness to adopt a plurality of methods for data collection and analysis in response to the changing needs of disabled people (Stone and Priestly, 1996) Though not all research into DPS will adhere to all six principles, they do provide a useful roadmap for researchers seeking to move beyond describing the experience of disability towards identifying and removing disabling physical and social barriers. For researchers in some geographical contexts, adopting an ‘overt political commitment to the struggles of disabled people for self-emancipation’ will be socially and culturally problematic and challenging to operationalise. However, if we recognise that there are systemic structural barriers to the inclusion of PwD in everyday life (work, access to leisure, education) then the type of research we conduct, conceived by who, controlled by who and ‘voiced’ by who is important. In this guide, we propose that adopting these six principles will help researchers to (collaboratively) design more useful and socially meaningful research projects that can be of practice benefit to PwD and related advocacy organisations.

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3. Research practice: some principles

3.1 Focus on the person and not the impairment When undertaking research about DPS, or with PwD, it is important to treat athletes, or the individuals you are working alongside, with the same respect you would offer to the non-disabled population. You should avoid patronising or condescending language when engaging with research participants and ensure that research studies are designed with the involvement of PwD in mind. You may be working with athletes, non-athletes or the general public with visible or invisible impairments. Make sure you focus on the person first and foremost and avoid foregrounding the impairment unless your participants draw attention to it. This is not to dismiss the importance of a collective consciousness around the experience of disability. Rather, it is a recognition that individual experiences of disability exist within society. All people are individuals, with different characteristics and traits, and different social and structural barriers will be perceived and experienced slightly differently. As an able-bodied researcher, it is important to recognise that your participants’ experiences may well differ from your own. Listen and show empathy. Examples of do and don’t Do: if your common salutation method when greeting a person is to normally shake hands, then consider doing the same even if the person has limited use of their hands or wear prosthetics. The person will let you know if a certain action is appropriate or not. Do: be transparent in what you want to achieve and ask what your participants want too.

3.2 Understand (but don’t reinforce) the political and cultural context of disability Unfortunately, the rights and political power of PwD varies across the world. While the Uited Nations Convention of the Rights of Persons with a Disability (United Nations, 2006) enshrines rights in the signatory nations, inequality in the promotion and protection of these rights remains a problem. Partly, this is due to variation in understandings of, and adherence to, the models of disability described briefly in this guide. In some nations, PwD remain on the margins of society, defined by their impairment and unable to benefit from the same rights in the fields of education, employment and sport. As researchers, it is important to understand the political and cultural context of the country you are researching within, while also being careful not to condone activities that reproduce marginalisation and power deficits between PwD and the non-disabled majority. It is also important that researchers from outside the cultural context of study avoid the danger of decolonising knowledge. Humphrey claims that there are good examples within disability studies ‘which demonstrate that cross-cultural dialogues are capable of illuminating aspects of each world which may otherwise have been hidden to “insiders”’ (2000, p.79). Research can be political. It can facilitate discussions that generate the conditions for social change. It is, therefore, important to challenge stereotypes, ensure your research engages with a broader public outside of academia and is influencing political and policy processes. As a researcher, you also need to be ready to have that ‘difficult’ discussion regarding what your data may mean for those responsible for policy or practice in your research location. Examples of do and don’t

Do: empathise but avoid sympathising if you are a non-disabled person. Do: be aware that your participants’ life experiences may have been very different from yours. Remember that you are not disabled and you may have unconscious bias. Don’t: do not speak in a different tone and do not use language that is condescending when working alongside or speaking with PwD. Do not assume that a person with a physical impairment also has a hearing impairment or that his/her cognitive capacity is diminished in any way.

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Do: always ask if an individual would like assistance, offering your help. In different countries it is more acceptable offering assistance to PwD. Do: in your research design, carefully consider how your research findings will be received and how important cultural context is to the communication and dissemination of the message. Don’t: do not rush in and impose yourself, offering help when you see a PwD. Your help may not be required or welcome.


3.3 Foreground the voice(s) of PwD

3.4 Recognise disabilities and not disability

By making PwD participants in the investigation rather than the ‘objects’ of the research, as is the case with the positivist approach, the principle of ‘control’ and giving voice is upheld. Additionally, foregrounding the voice of PwD can reduce the sense of alienation experienced and reported in other forms of research. It is, of course, relatively easy to talk of ‘foregrounding voice’ and ceding control to PwD, but there are practical difficulties associated with operationalising these principles in researching DPS. It is imperative that preliminary conversations have been undertaken before a research design is implemented to ensure that expectations are clear, trust is forged and power relations between researchers and those involved in the research have been surfaced and acknowledged. In some countries, culturally, PwD may not ever have been asked for their opinion, so it is important to take time and build meaningful dialogue and discussion into the research process in advance of fieldwork commencing.

Related to the earlier discussion about the limitations of a social model of disability for its conception of ‘them’ and ‘us’ and reinforcing a homogenous identity for PwD, it is important to recognise the various types of impairment that exist and the diverse ways that social actors relate to social structures. At the very least, it is crucial that researchers acknowledge the differences in the experiences of those individuals living with visual impairments from (say) those with mobility restrictions. In the realm of DPS, there has been a tendency to focus on individuals using wheelchairs as the most visible representation of disability sport, but there are many other types and levels of impairment type that should also be included in research. Depending on the focus of the research, it is important that the researcher builds an awareness of the different types of impairment into their research design. This could include separating out physical, sensory, learning and hidden disabilities and considering suitable research methods, thereafter.

Examples of do and don’t

Examples of do and don’t

Do: when conducting a study about the media representation of the Paralympics, try to capture and understand the ‘voice’ of the athletes, by examining how athletes themselves choose to be ‘self-presented’, for example, on digital and social media.

Do: if your study aims to capture Paralympic athletes’ attitudes and opinions, try to remember that the Paralympic Games is a multisport event in which athletes with different impairments participate.

Do: if your study included qualitative data drawn by interviews with disabled athletes exploring their opinion on one issue, before publishing your results offer them a summary of your interpretation of their words to verify with them if their perceptions and views have been accurately been represented in your final report.

Don’t: do not limit the population of study in one specific category and in your results make generalisations and blatant statement such as ‘The disabled athletes believe that...’. 3.5 Describing conditions provides the basis for changing them Though it is tempting to associate the principles of emancipatory research with qualitative research approaches, Stone and Priestley (1996, p.706) assert that ‘there can be no simple causal relation between the use of qualitative data and the removal of disabling barriers’. In order to describe the ‘material conditions of disablement’ (Abberley, 1992, cited in Stone and Priestley, 1996, p.705), large scale quantitative empirical work may also be necessary. However, describing these conditions should also be accompanied by a commitment to use that information to facilitate change if research is to have an emancipatory potential. Examples of do and don’t Do: work closely with governmental organisations with responsibility for national strategy and policy in order to access the data they are obligated to gather on the number of PwD in a particular location and social attitudes towards disability. Don’t: do not make judgements on the experiences of PwD based on statistical information about the prevalence of certain impairments in the population.

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4. Research techniques for studying disability and Paralympic sport

4.1 Participatory Action Research (PAR)

4.3 Go-along interviews

For researchers who want their work to make a difference and contribute to an emancipatory approach to research, Participatory Action Research (PAR) is a useful research technique. PAR is rooted in ‘notions of democracy and social justice... an epistemology that engages research design, methods, analyses and products through a lens of democratic participation’ (Torre et al., 2012, p.171). By adopting a PAR approach, researchers and their participants are emphasising the importance of developing research with a commitment to a solutions-orientation, focused on experimentation and learning, and the meaningful involvement of research partners (PwD and their advocacy bodies). As Reason and Bradbury (2008) suggest, ‘action research does not start from a desire of changing others “out there”, although it may eventually have that result, rather it starts from an orientation of change with others’ (p.1). PAR approaches address practical problems, generate knowledge, enact change, are participatory, and involve a cyclical process. PAR research also adopts the principles of being democratic (involving all), equitable (acknowledging equality of worth), liberating (freedom from oppressive conditions) and life enhancing (expression of full potential). Again, these principles align well with those of Stone and Priestly (1996), requiring that researchers not only ‘involve’ persons with a disability as ‘research participants’ but that they shape the research objectives and mode of ‘capturing’ experiences.

Go-along interviews provide an opportunity for researchers to accompany PwD as they experience either the urban environment or their access to sport and recreational opportunities. These interviews can be carried out using various techniques in order to accommodate various impairments. If, for example, researchers are working with those with special mobility needs, including using a wheelchair, then the go-along interviews could include use of mobile video to document the experience of participants. As Parent (2016) suggests, ‘They guided me through their daily commutes, their neighbourhoods and the places they go to for a wide variety of reasons. Video cameras were mounted on my wheelchair and on the participant’s wheelchair (if they had one)’ (p.521). In this sort of research, researchers and/or participants can make use of GoPro cameras, microphones and audio recorders to undertake their enquiries. Though there are some technical issues to be aware of, including the need for light but robust equipment, the use of widespread availability of mobile technologies makes this form of research possible.

4.2 Mobile methods: walking and rolling We know that mobility is a ‘resource distributed unequally among social groups’ (Frith, 2012, p.134). Walking (and riding or rolling) is a means of ‘theorising the world through consideration of the everyday pedestrian practices of others’ (Bates and Rhys-Taylor, 2017). Sporting experiences taking place in urban environments are amenable to these methodologies as knowledge-making practices because the researcher can experience and document physical changes and/or obstacles they encounter. Encountering the contemporary city through walking ‘induces a mobile, grounded perspective and foregrounds corporeal, sensual and affective matters’, enabling the researcher to ‘observe issues unfolding at street level, if only for a short time’ (Bates and Rhys-Taylor 2017, p.4). Going beyond a reliance on walking as an inclusive method for all, Parent (2016) has suggested that we need to remove the binary between walking and wheeling, where ‘Wheeling can be thought of as a mobile practice falling under the umbrella that covers a variety of walking practices’ (p.524). Depending on the types of impairment, accompanied walking and rolling methodologies are useful methodological practices for studying DPS.

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4.4 Photo elicitation Linked to mobile methods of walking, rolling or digital capture of journeys, photo elicitation techniques are also a useful way of asking participants in DPS to capture their experiences, using cameras provided by the research team (see Porcelli et al, 2014). Participants can be asked to record, from their own perspective, significant moments, happenings or feelings that reflect their experiences of DPS, depending on their level of involvement (as an athlete, casual user or non-user). The benefit of photo elicitation techniques relate to the foregrounding of PwD voice and experience, providing more control to the participant, but with a close relationship and discussion with researchers built into the method. Photo elicitation techniques can be accompanied with reflective or narrative interviews to enable research-participant reflections on the ‘real time’ experiences documented. 4.5 Day in the life (DITL) video capture Similar to the go-along interviews, researchers can work with participants to record their experiences of accessing DPS activities. Though less effective at eliciting the voice of PwD in first person terms, this method can be coupled with reflective or narrative interviews to enable the researcher’s interpretations of important moments or encounters to be revised on the basis of participant’s feedback. Porcelli et al. (2014) used a DITL approach with young PwD, capturing five or six significant episodes from the day’s filming, Like photo elicitation, the subsequent video was discussed with the participants to ensure alignment between researcher-participant perspectives.


5. Overcoming limitations and offering solutions

4.6 Media analysis The media represent an influential transmitter of knowledge and narratives about disability. Media sport events such as the Paralympics Games can reach significant audiences and the diverse media landscape provides interesting opportunities to explore whether the Paralympic Games can alter the way disabled people are portrayed in the media. Traditionally, most studies have used content analysis and applied comparative methods to assess the coverage allotted to the Paralympic Games in terms of frequency and amount of published news about the event. In general, the strategy adopted by the plethora of researchers is to provide quantitative data and make inferences from them about the differences between different variables. For example, the amount of coverage of the Paralympic Games has been compared to that of the Olympic Games, and the amount of coverage of female Paralympic athletes has been compared to that of female Olympic athletes (Pappous, Marcellini and Léséleuc, 2011). However, part of the content analysis paradigm, researchers can also utilise qualitative techniques to shed insight into the underlying rationale of journalists and listen to the voices of the key actors of the news making process. Howe (2008) took an interesting ethnographic approach, focusing in the actual production of printed media in the newsroom. More recently, Solves et al. (2018) conducted interviews with journalists who covered previous editions of the games in order to shed light on the possible reasons for the portrayal of the Paralympic athletes.

5.1 Involving PwD and advocacy organisations from conception In order to enable these experiences to be captured and documented in line with the needs and interests of our research collaborators, it will be necessary to liaise with potential participants in advance of the implementation of any specific battery of methods. It would be advantageous to host a workshop (or series of workshops) on potential ‘methods’ with disabled persons organisations or equivalent (Disabled People’s International - Japan would be relevant in Tokyo). These participatory sessions would be designed to elicit ideas and respond to proposals related on appropriate methods to address the primary research questions – though these may also be open to revision based on the workshop outcomes.

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6. Further recommended reading

6.1 Conceptual explorations of disability and Paralympic sport Misener, L., McGillivray, D., McPherson, G. and Legg, D. (2016) Examining Parasport Events Through the Lens of Critical Disability Studies (p.175-192), In Lamond, I. and Platt, L. (eds) Critical Event Studies: Approaches to Research, Palgrave Macmillan 6.2 Researching media representations of disability and Paralympic sport McGillivray, D., O’Donnell, H., McPherson, G. and Misener, L. (2019) Repurposing the (Super)Crip: Media Representations of Disability at the Rio 2016 Paralympic Games, Communication & Sport Solves, J., Pappous, A., Rius, I. and Kohe, G. (2018) Framing the Paralympic Games: A mixed-methods analysis of Spanish media coverage of the Beijing 2008 and London 2012 Paralympic Games. Framing the Paralympic Games: A mixed-methods analysis of Spanish media coverage of the Beijing 2008 and London 2012 Paralympic Games [Online]. Available at: https://doi.org/10.1177/2167479518808237 McPherson, G., O’Donnell, H., McGillivray, D. and Misener, L. (2016). Elite athletes or superstars? Media representation of para-athletes at the Glasgow 2014 Commonwealth Games, Disability and Society, 31 (5): p.659-675. Available at: http://dx.doi.org/10.1080/09687599.2016.1197823 Pappous, A., Marcellini, A. and de Léséleuc, E. (2011). Contested issues in research on the media coverage of female Paralympic athletes. Sport in Society [Online] 14: p.1182-1191. Available at: http://dx.doi.org/10.1080/17430437.2011.614775. Pappous, A., Marcellini, A. and de Léséleuc, E. (2011). From Sydney to Beijing: The Evolution of the Photographic Coverage of Paralympics Games in Five European Countries. Sport in Society [Online] 14: p.345-354. Available at: http://dx.doi.org/10.1080/17430437.2011.557271 de Léséleuc, E., Pappous, A. and Marcellini, A. (2010) The media coverage of female athletes with disability. Analysis of the daily press of four European countries during the 2000 Sidney Paralympic Games. European Journal for Sport and Society [Online] 7: p.283. Available at: https://content-select.net/portal/media/view/527a7df11be4-43d3-89bb-30c12efc1343

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6.3 Researching the legacy of disability and Paralympic sport events Brown, C. and Pappous, A. (2018) “The Legacy Element... It Just Felt More Woolly”: Exploring the Reasons for the Decline in People With Disabilities’ Sport Participation in England 5 Years After the London 2012 Paralympic Games. Journal of Sport and Social Issues [Online]. Available at: https://doi.org/10.1177/0193723518781237 McPherson, G., Misener, L., McGillivray, D., and Legg, D. (2017) Creating public value through parasport events: Enabling progressive opportunity, Event Management, 21 (2): p.185-199 Misener, L., McPherson, G., McGillivray, D. and Legg, D. (2018) Leveraging Disability Sport Events: Impacts, Promises, and Possibilities, London: Routledge Misener, L., McGillivray, D., McPherson, G. and Legg, D. (2015) Leveraging parasport events for sustainable community participation: The Glasgow 2014 Commonwealth Games, Annals of Leisure Research, 18 (4): p.450-469 Aya Sakai (2015) Inclusive design developed in urban built environment: Focus on planning and designing for London Olympic/Paralympic Games, Journal of Architecture, Planning and Environmental Engineering, 80 (709), p.669-676, https://doi.org/10.3130/aija.80.669 (in Japanese) 6.4 Researching geographies of disability and Paralympic sport McGillivray, D., Misener, L., and McPherson, G. (2017) Major sporting events and the geographies of disability, Urban Geography, http://dx.doi.org/10.1080/02723638.2017.1328577

6.5 Researching attitudes to disability and Paralympic sport Paradis, K., Misener, L., McPherson, G., McGillivray, D. and Legg, D. (2017) Examining the impact of integrated and non-integrated parasport events on volunteer attitudes towards disability, Sport in Society, 20 (10): p.1724-1744 DOI: 10.1080/17430437.2017.1329826 Inahara, Minae (2009) Abject Love: Undoing the Boundaries of Physical Disabilities, Germany: VDM Verlag Cole, Jonathan (2006) Still Lives: Narrative of Spinal Cord Injury, US: Bradford Book 6.6 Researching theories of disability and Inclusivity (in Japanese) 熊谷晋一郎 (2009), リハビリの夜, 医学書院 (Shinichiro Kumagaya (2009) The night of rehabilitation, Tokyo: Igaku-Shoin Ltd.) 綾屋 紗月, 熊谷晋一郎 (2010) つながりの作法, 同じでもなく違うでも なく, NHK新書 (Satsuki Ayaya, Shinichiro Kumagaya (2010) Manners of a connection, not the same or different, Tokyo: NHK Publishing, Inc.) 石川 准, 倉本 智明 (2002) 障害学の主張, 明石書店 (Jun Ishikawa, Tomoaki Kuramoto (2002) The advocacy of disability studies, Tokyo: Akashi Bookstore Ltd.) 河野哲也(2015),現象学的身体論と特別支援教育:インクルーシブ社会 の哲学的探求, 北大路書房 (Tetsuya Kohno (2015) The Phenomenological body theories and the special education: The philosophical exploration of an inclusive society, Kyoto: Kitaoji Bookstore Ltd.)

Richard, R., Marcellini, A., Pappous, A., Joncheray, H. and Ferez, S. (2019) Build and ensure the legacy of the Olympic and Paralympic Games. Towards a sustainable sports inclusion of disabled people. Movement & Sport Sciences. Available at: https://dx.doi.org/10.1051/sm%2F2019031

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8. References

Abberley, P. (1992) Counting Us Out: A Discussion of the OPCS Disability Surveys, Disability, Handicap & Society, 7 (2), p.139-155. Barnes, C. (1992) Qualitative Research: Valuable or Irrelevant? Disability, Handicap & Society, 7 (2), 1992, p.115-124. Bates, C., and Rhys-Taylor, A. (2017) Finding our Feet, In: Bates, C., & Rhys-Taylor, A (eds) Walking Through Social Research, London: Routledge. Branfield, F. (1998) What Am I Doing Here? ‘Non-disabled’ people and the isability movement: a response to Robert F. Drake, in Disability & Society, 13 (1), p.143-144. Brittain, I. and Beacom, A. (2016) Leveraging the London 2012 Paralympic Games: What legacy for people with disabilities? Journal of Sport and Social Issues, 40 (6), p.499–521. Davis, J.M. (2000) Disability Studies as Ethnographic Research and Text: research strategies and roles for prompting social change? Disability and Society, 15 (2), p. 191-206. Drake, R. (1996) Charities, Authority and Disabled People: A qualitative study, Disability & Society, 11, p.5-23. Felske, A.W. (1994), Knowing about Knowing: Margin Notes on Disability Research, in Rioux, M.H. and Bach, M. (eds) (1994) Disability is Not Measles: New Research Paradigms in Disability, Roeher Institute, Ontario, Canada, p.181-199. Finkelstein, V. (1980) Attitudes and Disabled People: Issues for Discussion, monograph 5, World Rehabilitation Fund, New York. Howe, P.D. (2008) From Inside the Newsroom: Paralympic Media and the ‘Production’ of Elite Disability, International Review for the Sociology of Sport, 43 (2), p.135 – 150. Humphrey, J.C. (2000) Researching Disability Politics, Or, Some Problems with the Social Model in Practice, Disability & Society, 15 (1), p.63-85. Imrie, R. (1997) Rethinking the relationships between disability, rehabilitation, and society, Disability and Rehabilitation, 19 (7), p.263 – 271.

OHRC (Ontario Human Rights Commission) (n.d.) Ableism, negative attitudes, stereotypes and stigma. Available at: www.ohrc.on.ca/en/policy-preventing-discriminationbased-mental-health-disabilities-and-addictions/5-ableism-negativeattitudes-stereotypes-and-stigma Oliver, M. (1992) Changing the Social Relations of Research Production?, Disability, Handicap & Society, 7 (2), p.101-114. Oliver, M. and Barnes, C. (2012) The New Politics of Disablement. New York: Palgrave MacMillan. Oliver, M. and Barnes, C. (1997) All We Are Saying is Give Disabled Researchers a Chance, Disability & Society, 12 (5), p.811-813. Pappous, A., Marcellini, A. and de Léséleuc, E. (2011) From Sydney to Beijing: The Evolution of the Photographic Coverage of Paralympics Games in Five European Countries. Sport in Society, 14, p.345-354. Parent, L. (2016) The wheeling interview: mobile methods and disability, Mobilities, 11 (4), p.521-532, DOI: 10.1080/17450101.2016.1211820. Porcelli, P., Ungar, M., Liebenberg, L. and Trépanier, N. (2014) (Micro) mobility, disability and resilience: exploring wellbeing among Youth with physical disabilities. Disability & Society , 29 (6), p.863–876. Priestley, M. (1998) Constructions and Creations: idealism, materialism and disability theory, Disability & Society, 13 (1), p.75-94. Reason, P. and Bradbury, H. (eds) (2013) The Sage Handbook of Action Research: Participative inquiry and practice, 2nd edition. London: Sage. Solves, J., Pappous, A., Rius, I. and Kohe, G. (2018) Framing the Paralympic Games: A mixed-methods analysis of Spanish media coverage of the Beijing 2008 and London 2012 Paralympic Games, Communication & Sport, 7 (6), p.729-751. Stone, E. and Priestley, M. (1996) Parasites, pawns and partners: disability research and the role of non-disabled researchers, British Journal of Sociology, 47 (4), p.699 – 716.

Marks, D. (1999) Disability: Controversial debates and psychosocial perspectives. London: Routledge.

Torre, M. E., Fine, M., Soudt, B. and Fox, M. (2012) Critical Participatory Action Research as Public Science, APA Handbook of Research Methods in Psychology, Cooper, H.M. and Camic, P.M (eds), Washington, D.C., American Psychological Association.

Morris, J. (1991) Pride Against Prejudice: Transforming Attitudes to Disability, The Women’s Press Ltd, London.

Union of Physically Impaired Against Segregation (UPIAS) (1976) Fundamental Principles of Disability, UPIAS, London.

Nourry, O. (2018) How Ableism Leads to Inaccessibility. Available at: https://www.24a11y.com/2018/how-ableism-leads-toinaccessibility/

Wolbring, G. (2012) Expanding Ableism: Taking down the Ghettoization of Impact of Disability Studies Scholars, Societies, 2 (1), p.75-83.

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Produced as part of the Economic and Social Research Council UK-Japan Social Sciences and Humanities Connections grant ‘Building Japanese and UK research capacity around disability studies and sport to positively impact the lives of disabled people - 2020 and beyond’. J1122-20 © Coventry University.


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