Contents

Publisher's Statement
Foreword
Feature
Current Issues

Bulletin 61 print

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| Feature | No.61 May 2011 |

Inclusive Research: Dis/ability, Difference and the Paralympic Games
Jill M. Le Clair

Impact of the Paralympic Games
Historically, those with different bodies were usually overlooked or ignored in many aspects of scientific and social research unless there was a political agenda of management, sadly often negative or barbaric (Mangan,1999). The Paralympic Games and the Paralympic Movement have played a very important role in shifting conventional expectations about ability, movement and inclusion both in national contexts, and globally. The high performance sport feats by disabled athletes has challenged previous limited expectations about persons with disabilities and questioned implicit assumptions about human performance in sport and in society as a whole. The political battles of the Paralympic Movement around accessibility and human rights attacked the prejudice, stigma and discrimination that had lead to policies and practices of isolation and exclusion. (1)
Recent research on the Paralympic Games and athletes with disabilities (Gilbert and Schantz, 2008; Howe, 2008; Legg and Gilbert, 2011; Le Clair, 2012) has illustrated the move to the inclusion of persons with disabilities within society and within sport, as definitions of normalcy have been challenged and reframed by the Disability Rights Movement and by academia (Linton, 1998; Garland-Thomson, 2010). The medical/welfare model was replaced by the social construction model and now with a rights-based approach represented by the 2006 UN Convention of the Rights of Persons with Disabilities. In the light of these changes, and the Games, this perspective paper argues for a critical approach to support more inclusive research and three aspects are briefly discussed: `normalcy,` ableism, the absent disabled and omissions that have been commonplace historically and still continue; the importance of more inclusive or holistic research for a more accurate understanding of social issues, and some omissions within disability research and questions in the context of future disability research.
Ableism and Absent citizens
Challenge to disability-defined sport
The concept of the `normal` and `normalcy` were constructed in the 19th century, used by researchers as a framework for their work, and it was assumed that individuals hear, see, think, walk and talk without physical challenges, disabilities or impairments, and difference was and is, frequently overlooked and rarely acknowledged (Davis, 2010a).(2) Ableism preferences the able-bodied and reflects the unequal power relations that privileges the non-disabled. For a non-disabled person, disability is often invisible. The assumption that everyone is non-disabled is commonplace in research and public discourse, and rarely did researchers or writers examine the lived body of the subjects they wrote about.(3) The concomitant of this was persons with a disability were seen to be primarily defined by disability itself, (Goffman, 1986), and the nature of their disability, so sport competition was defined by disability. The Paralympic Games began to shift its organisational structure from disability-based to sport based organisation. In swimming, Canada had four different swim teams, each disability based. In the 1980s, this began to change from categories of difference with disability-based competition to sport-based classification and competition. The focus became grouping swimmers by their propulsive ability through the water, not the nature of their disability and Paralympic swimmers were gradually integrated into Swimming Canada (Le Clair, 2009).
Absent citizens and absent research `subjects`
Prince (2009) outlines the omission of the disabled in his book Absent Citizens: Disability Politics and Policy in Canada. The term `absent` captures the disability reality in many aspects of society and research.(4) Disabled research `subjects` or as Dupuis (1999) prefers, the more reflexive term `participants as agents` (Watson, 2010: p356) are often absent, as are disabled researchers themselves.(5) Linked to this absence are diverse aspects tied to accessibility issues – physical barriers, social barriers, cognitive and key, financial barriers. Charlton (1998) rightly insists that accessibility is tied to the socio-economic, political and financial issues that are an impact on disability in all aspects.
Access to education is essential for the participation of persons with disabilities in society and research. Historically, children with disabilities, whether physical or intellectual, were excluded from mainstream schools with few accommodations made for those who were included (Swanwick & Marschark, 2010). Buildings, facilities and classrooms themselves were often inaccessible; students in the West sometimes had to be physically lifted in their wheelchairs to gain access to an education and the ongoing reality for many students in low and middle-income countries is that with limited resources, they are forced to stay at home because of the absence of sidewalks and roads and the lack of resources such canes, walkers, wheelchairs, scooters and communication technology. Once in a post-secondary environment, accommodations are mostly unavailable and inequities continue for disabled teachers and faculty (McDermid, 2009) and lower salaries are tied to minimal accommodations to maximise workload and income.
I nclusive research: methodological bias
Disability as a variable
Age, gender, socio-economic status (class), religion, sexual orientation and ethnicity/race variables in research are expected for even the smallest quantitative or qualitative study in order to obtain accurate information about the individuals and groups under study.(6) Disability is still not one of the expected variables and research categories at this time and often the body is overlooked.
Prendergast argues that postmodern theory has been indispensible to the understanding of disability and Critical Disability Studies are important because they have challenged normatively, and destabilised narratives of national progress, social order and identity (2010: p288). The Paralympic Games and Movement have played an important role in challenging standard assumptions about ableism and normacly by raising awareness about the diversity of human bodies and the achievements of `different` bodies. Language around disability has also changed significantly over the past twenty years both in the West and globally.(7) The Games have impacted globally on language around disability in sport too – from being labelled a `cripple` to a Paralympian symbolises a profound change. Coverage of high performance sport and national athletes and the athletes of other countries by local and international media have reframed the meaning of disability and disability in sport in many areas (Pappous, de Léséleuc & Marcellini, 2011).
Bias free inclusive research
Researchers are looking for more accurate analyses of social phenomenon and recognition of the privileges and exclusions of the past. This approach has been called both bias-free research and inclusive or holistic research.(8) This paper argues that in the same way gender and sexual orientation are routinely included as important variables in research, so too questions about ability should automatically be included in any research protocol. The Paralympic Games, with their focus on those who are usually defined as different and can often represent statistically small groups of the population, have highlighted the need to address diversity in research. There are increasing resources for researchers to address more inclusive research and two are briefly mentioned here. Mary Anne Burke and Margrit Eichler are the authors of Bias Free Framework: A Practical Tool for Identifying and Eliminating Social Biases in Health Research (2006), but their approach can be used in diverse topics and not only health research. This book explains and critiques the gaps and omissions in research design and methodologies of the past and outlines strategies for better, more inclusive research. Also, the United Kingdom (UK) National Centre for Research Methods and the UK Economic and Social Research Council have conducted extensive work on bias in research and its importance for the social sciences and policies that impact on large numbers of the population. They argue:
Social science data are notoriously full of missing values, non-responses, selection biases and their idiosyncrasies. Simple analyses are usually very misleading; instead a comprehensive set of inter-dependent sub-models are needed to model the data complexities and core processes that social scientists want to understand, (BIAS, 2011).
Their BIAS 1 research program includes: multiple bias modelling for observational studies recognising the “unmeasured confounding, missing/mis-measured data, and various selection biases”(Best, Geneletti, Molitor and McCandless, 2011).(9)
Future research and inclusiveness within disability research
This section briefly highlights some current challenges within disability research linked to criticisms about inclusion and methodology. Health and physical activity, so-called `White Disability Studies,` Muslim women in sport and technology are growing areas of study, all underpinned by socio-economic challenges and in the context of ethical questions in research.
Ethics
There are heated debates about the insider – outsider perspective of researchers and those who are, or are not disabled (MacBeth, 2010) as there are still few researchers who write from the `inside` as retired disabled athletes (Howe, 2008) or as a person with a disability (Le Clair, 2012). These issues go far beyond improved informed consent forms and are at the heart of how research is conducted; what will be the nature of collaboration between the disabled and the non-disabled and who benefits? What is the role of the activist?; as there are blurred lines between the researcher/activist as some sport researchers hold roles as administrators, classifiers, advocates and activists. Also, much of sport takes place in public places and increasingly important in the light of privacy issues and the use of digital and phone cameras are visual ethics (Perry & Marion, 2010) particularly important with the long history of visual exploitation in disability.(10)
Health and physical activity and `optimistic` research
There is increasing concern about rising health costs and governments are turning their attention to research on the benefits of sport and physical activity at the community or grass roots level supported by the high visibility of the Games, for youth and the rapidly aging population. They have found, however, that there is not a great deal to draw upon so this is an area that needs further exploration.(11)
Although small qualitative studies are more frequently criticised, biases and omissions are found within diverse methodologies(12) including the medical field where rigorous standards are expected. Perhaps, partially because of aging populations and the popularity of internet searches, there has been increasing public attention to bias in findings, the nature of the review process of journals such as The Lancet and the New England Journal of Medicine (Chalmers & Matthews, 2006; Sullivan, 2009), and the ethics of placebo use (Blackwell, 2011).
Cludd`s review of methodological studies on the influence of bias in clinical trials raises issues that are important in any evidence-based research. She found that there was a lack of adequate randomisation, selection bias, gaps between conduct and reporting, inadequate attention to `drop-outs`, and conflicts of interest as less than 1% of the studies of researchers disclosed the nature of their funding; in addition, concluding with “bias is difficult to detect and appraise” (2006).
Many of these issues are also found in research on sport and recreation; often disability is not included as a variable; when it is included, sample groups are small and different disabilities are within the sample; it is often difficult to obtain a random group; and the focus sometimes is on sport performance not the individual disability. Cludd also found that there still was a publication bias in that positive findings were more frequently published.(13) In the social sciences, there is a tendency to present `feel good` results about sport linked to a number of factors including the following: researchers often love sport themselves and very often find these activities do have a positive impact on fitness/health and social aspects; there is the hope to support or continue programmes and funding; and there can be slanted results as often those who have a negative experiences in sport drop out and are not included in the survey group.
Also, in spite of abandonment of the medical model, there is also a push to medicalisation in the field of mental disability tied to psychological and emotional behaviour as distinct from intellectual disability (Reaume, 2000). There are ongoing battles in 2011 over the forthcoming DSM – 5 Diagnostic and Statistical Manual of Mental Disorders related to definitions of autism and the classification of disabling depressive disorders.(14) Medical diagnosis is particularly important to many persons classified as disabled, as a medical label allows access to resources and support that are otherwise unavailable and is an area in need of further research as many families battle in the worlds of medicine and insurance to obtain financial and other resources.
Areas of study

- Chris Bell (2010) states that he may `un-nerve many in Disability Studies” and his actions may seem “impolitic and offensive” (p381), but he argues that at this time, Disability Studies should be called White Disability Studies (p374) because of the omission of people of colour. Despite the fact that people of colour outnumber white people in the world, “white people harbour hegemony and cultural capital” (p378).
  Lauff`s excellent analysis of the participation rates at the Paralympic Games, Deaflympics and Special Olympics shows differential participation rates by country, region and gender and the north-south divide and is a very useful resource for additional research (2007; 2011).(15)
- There are fewer females in sport in the Paralympic Games, even though the IPC has worked hard globally to change this. Cultural beliefs about gender appropriate behaviour restricts opportunities to what has been a western based international sport competition (Jiwani & Rail, 2010; Parker, 2009). `Muslim feminists` also lobby for greater sensitivity towards the issue of Islamic dress (hijab) in Muslim countries and in countries with Muslim minorities, as well as support for sex segregation in sport for Muslim women, as the Islamic Women`s Games based in Iran have grown in popularity since 1995 (Limoochi and Le Clair, 2011). Some argue for support of the International Declaration for Muslim Women “Accept and Respect” (Benn & Koushkie-Jahromi, 2008) while others are dismayed about the ongoing gender inequities in all aspects of sport (Fasting and Brackenbridge, 2008). There is a gap in the literature from researchers in Muslim countries as unfortunately often there are challenges to obtain funding, conduct research and travel and publication restrictions.
- Other research builds on the work of Adrienne Rich and her critique of the social pressures for compulsory heterosexuality and assumptions about sexual orientation, while McRuer (2010) argues for a merging of the critical queer/disabled to deconstruct the idealisation of the able and the heterosexual. Barounis (2010) also contributes with a critique of the historical linkages between masculinity, queerness and disability, and the oversight of disabled women.(16) In addition, it is to be hoped that there will be greater attention paid to transgendered sport and issues of gender.
- Technology has transformed people`s everyday lives globally and the Paralympic Games. In the 1990s, administrators had to photocopy manuals and guidelines whereas today the internet, websites and email, texting and twitter have transformed communication. In the same way, the merging of technology and the body is an important issue for both those with and without disabilities as the traditional separation of the `artificial` `cyborg` body and the `natural` body has become blurred (Norman & Moola, 2011). Transplant Games are a reality and the cell phone has become an extension of the body. Electronic miniaturisation and design innovation limits have been pushed within the body itself, and with sport equipment.

Conclusion
Dis/ability – mobility and the senses should be used as a variable in research, in addition to the expected gender, age, socio-economic/class, ethnicity/race variables and sexual orientation to reflect the reality of diverse humanity instead of the assumed `normalcy`. The field of disability and the Paralympic Games provide many opportunities to challenge traditional perspectives and break new ground in an area where contests often take place in public spaces of the sporting arena and where a number of research areas can be examined or critiqued. Bias-free or inclusive research is reframing thinking about disability and there are many areas of research tied to the Paralympic Games and some of these are questioning methodology, `whiteness` in Critical Disability Studies`, Muslim women in sport, the `modified` technological body and the ethics of disability research. It is hoped that disability will increasingly become addressed outside of the work of disability specialists and this issue of the Bulletin will encourage current and future scholars to explore these issues further.
Notes
(1) Highlighting accessibility issues during the Athens Games in 2004, Jeff Adams climbed the Parthenon in his wheelchair, and Sir Philip Craven demonstrated to the press how inaccessible blocked sidewalks without cuts were for people in wheelchairs. At the Beijing Games in 2008, the Chinese government announced inclusive and support programs in education, rehabilitation and housing for the 83 million disabled in the country reflecting a shift to an inclusive approach.
(2) This has been much challenged and now disability itself is seen to “an unstable category” (Davis, 2010b).
(3) The infrequent attention and devaluing of ASL, Deaf Culture and the hard of hearing and Deaf communities (HHD) Lane has called audism (1992).
(4) I am indebted to Prince’s contribution as I struggled with the best descriptor to describe these omissions. Absent is a more powerful term than omission, because absent encapsulates the expectation that attendance is expected.
5) The barriers for disabled faculty will remain so long as accommodations are not made to recognise the time required to manage disability and the activities of daily living, and additional costs tied to work and research.
(6) In Canada, gender became a required component by the country’s major funding agencies such as the Social Sciences and Humanities Research Council (SSHRC) in 1985, with the publication of the guidelines outlined by Margrit Eichler in Sex as a Variable in Research.
(7) Language around disability can often provide insights into perceptions about the meaning of disability. Linton’s work reflected and pushed an awareness of language in North American and others have illustrated the cultural framing of disability in language and in policy in Korea (Kim, 2010) and in China (Sun et al, 2011).
(8) There has been some questioning of the term ‘bias free’ as some feel it is unrealistic or inaccurate to use the term bias-free research, but most would agree that holistic research that is more inclusive does lead to better research.
(9) Their BIAS II focus is on the methodological challenges of observational data related to surveys, longitudinal studies and small area data paying attention to non-responsiveness and the role of spatio-temporal factors. BIAS II has four main areas of focus by researchers from the UK and the USA: electoral behaviour, space-time patterns of criminal offences, measuring changes over time in small area estimates of income, unemployment and longitudinal studies of ageing-related changes in cognition and health. http://www.umdnj.edu/idsweb/shared/biases.htm
(10) There is also the issue of greater ethical animal awareness and the transition from seeing animals simply as pets and instead as animal companions within families (Hauch, 2011) and essential as working companions for those with disabilities.
(11) As in other countries, this concern was manifested in 2011 as the Canadian Senate Standing Committee on Human Rights held hearings to find ways to support the participation of children and youth under 25 in sport and physical activity. Part of this concern is tied to increasing obesity numbers in Canada, USA, UK and Europe.
(12) However, even in larger quantitative studies there are bias and methodological challenges as seen recently in the USA and Canada in the light of the predictive failures of commercial polling for elections. Allan Greg, the chair of one of Canada’s best known polling companies Harris-Decima pointed out the polling sample problems in the 2011 national election were tied to methodology (i.e. dwindling phone land lines skew results) and that polling is in a period of “transition.” Ipsos-Reid had the most accurate results, but CEO Darrell Bricker argued that relying on the “so-called random sample” is not enough and that coverage was a challenge (The Problem with Polling, 2011).
(13) Cludd argues that it might be reluctance on the part of researchers rather than the reluctance on the part of journals to publish negative results (2006).
(14) The DSM – 5 Diagnostic and Statistical Manual of Mental Disorders will be the new and fifth manual to be published in 2013 and there has been considerable debate about the grief exclusion criterion and its relationship to Major Depressive Disorder diagnosis.
(15) 146 countries participated in the 2008 Beijing Summer Paralympic Games and 44 in the 2010 Winter Games with athletes primarily from countries of the north. Geography, climate and the lack of resources in low and middle income countries are part of the difference in participation rates.
(16) Barounis examines the male body in the 2006 movies Murderball and Brokeback Mountain.
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Contact
Professor Dr. Jill M. Le Clair
Founding Chair of the Global Disability Research in Sport and Health Network
Humber College Institute
Toronto, Canada
Email: jill.leclair@sympatico.ca

http://www.icsspe.org/