Occupational therapy on the margins

Occupational therapy on the margins POLLARD, Nicholas <http://orcid.org/0000-0003-1995-6902> and SAKELLARIOU, Dikaios Available from Sheffield Hallam University Research Archive (SHURA) at: http://shura.shu.ac.uk/16688/ This document is the author deposited version. You are advised to consult the publisher's version if you wish to cite from it. Published version POLLARD, Nicholas and SAKELLARIOU, Dikaios (2017). Occupational therapy on the margins. World Federation of Occupational Therapists Bulletin, 17 (2), 71-75. Copyright and re-use policy See http://shura.shu.ac.uk/information.html Sheffield Hallam University Research Archive http://shura.shu.ac.uk Occupational Therapy on the margins Nick Pollard, Dikaios Sakellariou Abstract This article discusses occupational therapy's pursuit of social concerns through practice with marginalised groups or engaging with diversity. In this article we understand the term marginalisation as referring to people who are socially excluded from the rest of the society in which they live because of some economic, cultural, or social difference. We take the perspective that the experiences of marginalised people offer one means of assessing public health and social cohesion. We also explore the profession's recent literature on social transformation. Occupational therapy's narrow demographic profile and dominance of a Northern discourse are critically discussed in terms of engagement with how the problems of marginalisation, such as health inequality and poverty, impact on occupation. We address some of the problems which arise through professional and organisational power when working with marginalised people. The article concludes with an overview of the complexity of challenges in developing actions to meet diverse needs from a profession that is still growing. Introduction Although occupational therapy is recognised as an allied health profession, its origins as a profession in the USA were in concerns about the relationship between society and health. There has been a consistent tension between occupational therapy objectives of enabling participation in daily life and the biomedical concerns prevalent in healthcare (Hocking 2008a, 2008b, 2008c; Molineux & Baptiste, 2012; Guajardo & Mondaca, 2016). The profession has not always prioritised social concerns but the last few decades have seen an increasing exploration of the wider implications of participation in everyday life as a social justice issue (Aldrich, Boston, & Daaleman, 2017). Increasingly, occupational therapy literature is addressing practice with different marginalised groups. There are more people without than within the key influential groups in the social hegemony. These influential groups, a "core cabal of the capitalist executive and the power elite"(Goodman, 2016, p328) exert pressures on the structure of society through the uneven distribution of resources toward those who are already wealthy. This ultimately affects health outcomes amongst those who are poor and in various ways, marginalised. Examples include some very significant areas such as the occupational needs of women (McGrath, 2016); of older gay people (Twinley & Price, 2016), or disabled people (Block, Kasnitz, Nishida & Pollard, 2016). Marginalisation may be understood as an aspect of the cultural superdiversity (Vertovec, 2007) many societies experience. Social differences may be seen as more significant than similarities. Although, as ,for example, David Sibley (1995) has discussed, there is a historically established idea that the quality of civilization can be judged by the experiences of those who live in its peripheries or who are socially excluded, the commentators tend to come from a dominant and powerful (white, middle class, male, western) cultural group to whom the full variety of excluded spaces tends to be invisible (Owens, 2016). Factors such as cultural colonisation, a focus on economic growth and marketised consumption (Goodman, 2016) have produced many social victims amongst those whose experience of exclusions occur in the prison systems, or as refugees, (Jakoby, 1981), the poor (Bannerjee & Duflo 2012; Pickett & Wilkinson, 2015), older people (Tejawinata, 2013; Wiesel, 2000), children (Armstrong-Dailey, & Zarbock, 2001), and women (McCann, 2009). In combination, all these groups together may be numerically far from marginal, but the social distribution of power, wealth, and opportunity is unequal and concentrated in a small part of the population. To address the needs of marginalised populations, occupational therapy may need to reevaluate its relationship with biomedical discourses to prioritise social concerns. In nursing, such an approach has been named as "action nursing"(Goodman, 2016, p 331). Watson (2006) suggested that the remit of occupational therapy is working with people with diverse and marginalised experiences whose disabling conditions affect their ability to participate in community and social life in a meaningful way, i.e. through an approach that respects diverse cultural reflections of the identity – or being - which is expressed through doing. Even as large an issue as mental health practice can be aligned with the discussion of 'diverse roles' for occupational therapists (Clewes & Kirkwood, 2016). Kirkwood, (2016: xxiii) points out that the complex and diverse nature of society is having an effect of widening occupational therapy practice, thus occupational therapists are getting “everywhere”. However, this may simply be a process of getting people to conform to the social expectations of the health system rather than to address local or culturally determined occupational needs (Naidoo, Van Wyke and Joubert, 2017). Ramugondo (2012) has called for an ‘occupational consciousness’, while Guajardo, Kronenberg and Ramugondo (2015) demand the practices of occupational therapies, rather than a single conceptualisation of occupational therapy is necessary to address account of the diversity of identities this complexity suggests. Elsewhere it is argued that occupational therapists need to work “underground” (Stouffer, 2016: 220) to develop their work with social minorities. These seemingly contradictory perceptions of margins, of diversity, and of working underground whilst belonging to the profession may reflect a tension in the profession. Owens (2016) and Beagan (2007) have discussed how occupational therapists may observe society from within a restricted social profile since most occupational therapists are white, middle class women. There is a risk in assuming that the hierarchical order of the world, especially one which is dominated by the perspectives of powerful English speaking countries, must be the normative view, and anything different is marginal or other (Guajardo, Kronenberg and Ramugondo,2015). If the majority of the evidence and knowledge base of the profession is based in the northern part of the globe and its perspective, then the professional vision of normality will reflect this view. Turn the world upside down, so that the South is on top, and the perspective by which society is assessed immediately is ordered differently (Garcia-Ruiz, 2016; Guajardo & Mondaca, 2016). Divides As divides in many societies persist or become wider (e.g. regarding access to healthare, health indicators, and income) there is less support for redistributive policies (Andersen & Curtis, 2015; Brown-Iannuzzi, Lundberg, & McKee, 2017; Steele 2015). The effects of these divides are widely felt by people through rising occupational imbalance, poorer health, and reduced life chances across a spectrum of needs (Clouston 2014; Pickett & Wilkinson, 2015). The consequences of these divides for health and social care have been challenging. Policy tends to be determined by an elite perception of the global market which emphasises costs. Governments around the world increasingly follow a neoliberal ideology, whereby an economics-based rationality permeates all aspects of daily life, including the domestic sphere and healthcare. Recent examples include the negative effects the neoliberal restructuring of the healthcare system in Chile has had on several groups, including women and people with disabilities (Rotarou & Sakellariou, 2017a, 2017b) and the detrimental effect of austerity policies in Greece on the population’s health (Kentikelenis et al., 2011). Health and social care spending is a key area of government responsibility and expense, and governments have shifted the financial burden from being a public concern to individuals to choose how their care is financed. As health and social care is expensive, many cannot afford to make up the shortfall when public services retreat (Koch, 2012). A concern with social transformation and practical action has been expressed in some of the occupational therapy literature, arguing across the scale for everything from simple intervention to higher level negotiation (dos Santos & Gallasi, 2014; Kronenberg, Simo Algado & Pollard, 2005; Kronenberg, Pollard & Sakellariou, 2011; Lopes & Malfitano, 2016; Pollard, Sakellariou & Kronenberg, 2008; Pollard & Sakellariou, 2012; Sakellariou & Pollard, 2016; Watson & Swartz, 2004; Whiteford & Wright St Clair, 2005Some of these ideas have been developed in the global south and in non-anglophone literatures (dos Santos & Gallasi, 2014; Lopes & Malfitano, 2016; Simo, Guajardo, Correa, Galheigo, & Garcia, 2016). Authors such as Beagan (2007; 2012) and Owens (2016) suggest that occupational therapy has often silenced those people who do not conform to a narrow stereotype of white, middle class, heterosexual and female and articulate a critical perspective of health policies, the priorities for intervention, the need for new critical dialogues, and of directions within the profession itself. With so many margins indicated in the literature the marginal may be much less out of the ordinary than the term implies. For example, people with disabilities (Block, Kasnitz, Nishida & Pollard, 2016), people who are the main business of occupational therapy, rarely have a voice in the construction of its apparatus, tools and interventions. Guajardo & Mondaca (2016) and Owens (2016) suggest that the clinical focus of the profession has blinded it to social and political issues conditions which perpetuate or exacerbate illnesses and disabilities. By ignoring them the profession contributes to marginalisation. It may be challenging to reflect on and recognise the complex interplay of factors and cultural assumptions that nestle alongside the beneficial components of underpinning theory and evidence (Owens, 2016). Culture, structures, institutions and collective experiences are difficult to change (Bilewicz, 2016; Hornsey, 2016) but occupational therapists have begun to unravel some of these critical issues and prevailing social attitudes, for example to gender or social disadvantage(Galhiego, 2011; Gutiérrez Monclus, & Pujol Tarrès, 2016; Olin, 2017). Therapy, and justice Experiences of marginalisation cannot always be addressed through the occupation focused tools and theoretical underpinning concepts the profession has developed. For example, occupational justice is a key term in professional discourses around marginalisation and social participation. As commentators within the profession and occupational science have found, powerful and reductive positivist constructs around practice can obscure the need for social transformation (Farias, Rudman, & Magalhães, 2016; Gordon, Lapointe, MacLachlan, & Craik, 2016; Kinsella & Durocher, 2016; Mirza, Magasi, & Hammel, 2016). The role of occupational therapists (amongst others) is connected with their professional power which involves working within the interests of their employers, such as state or corporate healthcare systems which, as dominant players in the organisation of services, are able to determine how needs are met. Examples of this may be working within the need for corporate safety and limited liability in clinical decision making (Durocher, Gibson, & Rappolt, 2016), or organisational communication and efficiency priorities (Goldman et al. 2016). These principles become margins within which people with disabilities and people with experiences of mental distress may be contained by groups of professional workers such as occupational therapists. The needs and interests of people with disabilities and people with experiences of mental distress do not rank so significantly as powerful professional collaborations supported by knowledge of clinical expertise. These problems arise as functions of the power, efficiency and organisation through which many different and marginal experiences are managed (see Foucault, 1977). Occupational therapists developing their work in emergent roles may even have the effect of bringing groups within the reach of these controls. In reaching hard to reach groups, such as asylum seekers or homeless people occupational therapists may have to negotiate with agencies such as the police in order to provide a safe service to these people without them being subject to arrest. Thus, while the aim of the professional might be to offer therapeutic or social intervention, this may also be understood as the benign aspect of their 'soft policing' (Whittington, 1970) role, maintaining social stability on behalf of the authorities and state organisations for which they work. Shakespeare, (2013) points out that people with disabilities sometimes experience professional interventions as unjustified controls, constraints and restrictions on personal capacity. As occupational therapists work with an increasing variety of marginal groups, it is important that intervention is collaboratively evaluated with the people for whom it is intended. Conclusion It has been argued that the discourse around 'occupational therapies without borders', or around working with marginal groups, has led to a ’movement’ about the role of occupational therapy, and the objectives to which its members might be set to work (Frank, Baum, & Law, 2010). Diversity and fluidity are major tropes in global society, and they are driven by economic instability and uncertainty, inequalities in the experience of wealth and health. Since this is the centennial year of the profession, it is worth remembering what some of the antecedents for occupational therapy were in the work of people like Octavia Hill, whose concern about the impact of social and economic marginalisation on health and welfare was an expression of a romantic tendency towards the spiritual and search for enlightenment through doing. Occupational therapy, Hocking (2008a, 2008b, 2008c) points out, came out of identifying that people at the social margins, particularly those with long term disabling conditions needed interventions to address their chronic conditions, restore self-esteem and hope. Social transformation is complex and must take different forms according to local contexts and needs. Occupational therapy is a small profession for which this represents a significant challenge. There will always be tensions between interest groups and issues of representation in which the most powerful and effective gain the most resources. Social transformation may even be understood differently by individuals within the same community, and as a consequence will never have a definitive, scientifically rational, decisive process, it will always have to be negotiated according to the present situation, the ebbs and flows of policy and different administrations, conflicts and disasters. People on the peripheries of society are often the focus of temporary attention when they are perceived as a problem, until a new problem arises. Many of the problems people with disabling conditions experience have social origins. Occupational therapy is an action based approach to working with people by facilitating them to negotiate for the means to have control over their own lives. References Abendstern, M., Tucker, S., Wilberforce, M., Jasper, R., & Challis, D. (2016). Occupational therapists in community mental health teams for older people in England: Findings from a five-year research programme. British Journal of Occupational Therapy. 80(1), 20-29. DOI: 0308022616657840. Aldrich, R. M., Boston, T. L., & Daaleman, C. E. (2017). Justice and US Occupational Therapy Practice: A Relationship 100 Years in the Making. American Journal of Occupational Therapy, 71(1), 7101100040p1-7101100040p5. Armstrong-Dailey, A., & Zarbock, S. F. (2001). Hospice care for children. New York, Oxford University Press. Banerjee, A.V. & Duflo, E. (2012) Poor economics: Barefoot hedge-fund managers, DIY doctors and the surprising truth about life on less than $1 a day. London: Penguin. Beagan, B. L. (2007). Experiences of social class: Learning from occupational therapy students. Canadian Journal of Occupational Therapy, 74(2), 125-133. Beagan, B.L., & Chacala, A. (2012). Culture and diversity among occupational therapists in Ireland: when the therapist is the ‘diverse’ one. British Journal of Occupational Therapy, 75(3), 144-151. Bilewicz, M. (2016). The Dark Side of Emotion Regulation: Historical Defensiveness as an Obstacle in Reconciliation. Psychological Inquiry, 27(2), 89-95. Block, P, Kasnitz D, Nishida A, Pollard N (eds) (2016) Occupying Disability: Critical Approaches to Community, Justice and Decolonizing Disability, New York: Springer. Brown-Iannuzzi, J. L., Lundberg, K. B., & McKee, S. (2017). Political Action in the Age of High Economic Inequality: A Multilevel Approach. Social Issues and Policy Review, 11, 1, 232-273. Clewes, J., &Kirkwood, R. (2016). Diverse roles for occupational therapists. Keswirk: M&K Clouston, T.J. (2014). Whose occupational balance is it anyway? The challenge of neoliberal capitalism and work–life imbalance. British Journal of Occupational Therapy, 77(10), 507– 515. Durocher, E., Gibson, B. E., & Rappolt, S. (2016). Rehabilitation as “destination triage”: a critical examination of discharge planning. Disability and rehabilitation, 39(13), 1271-1278 http://dx.doi.org/10.1080/09638288.2016.1193232. Farias, L., Rudman, D. L., & Magalhães, L. (2016). Illustrating the importance of critical epistemology to realize the promise of occupational justice. OTJR: Occupation, Participation and Health, 36(4), 234-243. Foucault, M. (1977). Discipline and punishment. The birth of the prison. Translated by A Sheridan. Harmondsworth, Penguin. Frank, G.; Baum, C.; Law, M. (2010). Chronic conditions,health, and well-being in global contexts. In: L. Manderson, C. Smith-Morris, (Eds.). Chronic conditions, fluid states: chronicity and the anthropology of illness, (pp. 230-246). Piscataway: Rutgers University Press. Galheigo, S. (2011). What needs to be done? Occupational therapy responsibilities and challenges regarding human rights. Australian Journal of Occupational Therapy, 58(2), 60-6. García-Ruiz, S. (2016). Occupational Therapy in a Glocalized World. In D. Sakellariou, N. Pollard (eds.) Occupational Therapies Without Borders: integrating justice with practice, 2e. (pp 185-193). Edinburgh: Elsevier Science. Goldman, J., Reeves, S., Wu, R., Silver, I., McMillan, K., Kitto, S. (2016) A sociological exploration of the tensions related to interprofessional collaboration in acute-care discharge planning. Journal of Inter-professional Care, 30(2), 217-225. Goodman, B. (2016). The missing two Cs–commodity and critique: Obscuring the political economy of the ‘gift’of nursing. Journal of Research in Nursing, 21(4), 325-335. Gordon, C., Lapointe, J., MacLachlan, J., & Craik, J. (2016). A case study of a national association's actions to advance the integration of occupational justice and human rights in occupational therapy. World Federation of Occupational Therapists Bulletin, 72(1), 51-53. DOI: 14473828.2015.1117248. On line: http://www.tandfonline.com/action/showCitFormats?doi=10.1080%2F14473828.2015.11172 48 Guajardo, A., Kronenberg, F., & Ramugondo, E. L. (2015). Southern occupational therapies: Emerging identities, epistemologies and practices. South African Journal of Occupational Therapy, 45(1), 3-10. Guajardo, A. & Mondaca, M. (2016). Human rights, occupational therapy and the centrality of social practices. In D. Sakellariou, N. Pollard (eds.) Occupational Therapies Without Borders: integrating justice with practice, 2e. (pp102-108). Edinburgh: Elsevier Science. Gutiérrez Monclus, P., & Pujol Tarrès, J.. (2016). Occupational Therapy: Autonomy, Governmentality and Subjectification. Revista de Estudios Sociales, (57), 68-77. https://dx.doi.org/10.7440/res57.2016.05 Hammell, K. W. (2011). Resisting theoretical imperialism in the disciplines of occupational science and occupational therapy. British Journal of Occupational Therapy, 74(1), 27-33. Hocking, C. (2008a). The way we were: Romantic assumptions of pioneering occupational therapists in the United Kingdom. British Journal of Occupational Therapy, 71(4), 146-54. Hocking, C. (2008b). The way we were: thinking rationally. British Journal of Occupational Therapy, 71(5), 185-95. Hocking, C. (2008c). The way we were: The ascendance of rationalism. British Journal of Occupational Therapy, 71(6), 226-233. Hornsey, M. J. (2016). Collective Apologies Are Good at Regulating Transgressors’ Emotions, But for Victim Group Members the Story Is Not So Clear. Psychological Inquiry, 27(2), 101-105. Jacoby, R. (2002). Dialectic of Defeat: Contours of Western Marxism. Cambridge: Cambridge University Press. Kentikelenis, A., Karanikolos, M., Papanicolas, I., Basu, S., McKee, M., & Stuckler, D. (2011). Health effects of financial crisis: omens of a Greek tragedy. Lancet, 6736(11), 14571458. Kinsella E. A. & Durocher, E. (2016). Occupational justice moral imagination, critical reflection, and political praxis. OTJR: Occupation, Participation and Health. 36(4), 163-166. DOI: 1539449216669458. On line: http://journals.sagepub.com/doi/full/10.1177/1539449216669458 Koch, T. (2012). Thieves of virtue: When bioethics stole medicine. Cambridge MA: MIT Press. Kronenberg, F., Pollard, N., Sakellariou, D. (eds.) (2011). Occupational therapies without borders: Towards an ecology of occupation-based practices (Volume 2). Edinburgh, Elsevier Science. Kronenberg, F., Simo Algado, S. and Pollard, N. (eds.) (2005). Occupational Therapy without borders - learning from the spirit of survivors, Edinburgh, Elsevier Science. Lopes R.E., and Malfitano, A.S.M. (eds.) (2016). Terapia ocupacional social: desenhos teóricos e contornos práticos. Sao Carlos: Pluricom Comunicação Integrada. McCann, C.R. (2009). Knowledge that matters: Feminist epistemology, methodology, and science studies. Frontiers: A Journal of Women Studies, 30, 1, 142-171. McGrath,T. (2016). In our hands and the eyes of others: The emancipatory imperative of occupational witnessing for belonging and becoming. In D. Sakellariou, N. Pollard (eds.) Occupational Therapies Without Borders: integrating justice with practice, 2e. (pp 134-142). Edinburgh: Elsevier Science. Mirza, M., Magasi, S., & Hammel, J. (2016). Soul searching occupations: Critical reflections on occupational therapy’s commitment to social justice, disability rights, and participation. In Formatted: Italian (Italy) Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability (pp. 159-174). Springer Netherlands. Molineux, M., & Baptiste, S. (2011). Emerging occupational therapy practice: Building on the foundations and seizing the opportunities. Role emerging occupational therapy: Maximising occupation-focused practice, 3-14. Naidoo, D., Van Wyk, J. & Joubert, M., (2017), ‘Community stakeholders’ perspectives on the role of occupational therapy in primary healthcare: Implications for practice’, African Journal of Disability 6(0), a255. https://doi.org/10.4102/ajod.v6i0.255 Olin, E (2017). The clinical gaze – ascribed gender(ed) identities in a mental health service context. Scandinavian Journal of Disability Research, 19, 1, 45-55. Owens, L. (2016). Our professional existence is political: critical reflections on ‘seeing white’ in occupational therapy. In D. Sakellariou, N. Pollard (eds.) Occupational Therapies Without Borders: integrating justice with practice, 2e. (p. 194-202). Edinburgh: Elsevier Science. Pickett, K. E., & Wilkinson, R. G. (2015). Income inequality and health: a causal review. Social Science & Medicine, 128, 316-326. Pollard, N., Sakellariou, D. (Eds.) (2012). Politics of Occupation-Centred Practice. Oxford, Wiley. Pollard, N., Sakellariou, D., Kronenberg, F. (Eds.) (2008). A Political Practice of Occupational Therapy, Edinburgh, Elsevier Science. Ramugondo E.L. (2012). Intergenerational Play within Family: The Case for Occupational Consciousness. Journal of Occupational Science. 19(4), 326-340 Rotarou, E. S. & Sakellariou, D. (2017a). Neoliberal reforms in health systems and the construction of long-lasting inequalities in health care: A case study from Chile. Health Policy 121(5), 495-503. Rotarou, E. S. & Sakellariou, D. (2017b). Inequalities in access to healthcare for people with disabilities in Chile: The limits of universal health coverage. Critical Public Health. Online first. doi; http://dx.doi.org/10.1080/09581596.2016.1275524 Sakellariou, D., Pollard, N. (eds.) (2016). Occupational Therapies Without Borders: integrating justice with practice, 2e. Edinburgh, Elsevier Science. Shakespeare, T. (2013). Disability rights and wrongs revisited. London, Routledge. Sibley, D. (1995) Geographies of exclusion: Society and difference in the West. London, Routledge. Simo, S., Guajardo, A., Correa, F., Galheigo, S. & Garcia, S. (eds.) (2016). Terapias Ocupacionales desde el Sur: DerechosHumanos, CIudadanía y Participación. Santiago, Chile. University of Santiago. Stouffer, S. S. (2016) Living and working as an underground occupational therapist/scientist in Los Angeles. In D. Sakellariou and N. Pollard (Eds) Occupational Therapies Without Borders: Integrating justice with practice, 2ed. (p. 220-227). Edinburgh, Elsevier Science Tejawinata, R.S. (2013). The need for geriatric palliative care in Indonesia. Jurnal Widya Medika Surabaya, 1(2), 151-156. Twinley, R. & Price, L. (2016). Appreciating the lived experience of some older gay people. Considerations for contemporary occupational therapy practice. In D. Sakellariou, N. Pollard (eds.) Occupational Therapies Without Borders: integrating justice with practice, 2e. (pp.109-117). Edinburgh: Elsevier Science. Vertovec, S. (2007). Super-diversity and its implications, Ethnic and Racial Studies, 30(6), 1024-1054, DOI: 10.1080/01419870701599465 Watson, R.M. and L. Swartz (2004) (Eds.), Transformation through occupation. London: Whurr. Watson, R.M. (2006). Being before doing: The cultural identity (essence) of occupational therapy. Australian Occupational Therapy Journal, 53(3), 151-158. Wiesel, E. (2000). Longevity and Quality of Life. In Longevity and Quality of Life (pp. 283285). New York: Springer US. Whiteford, G., Wright-StClair (2005) (Eds.) Occupation and Practice in Context. Sydney, Elsevier/ Churchill Livingstone. Whittington, H. (1970) Community mental health. Forty-Seventh Annual Meeting of the American Orthopsychiatric Association (San Francisco, California, March 23-26, 1970): Digests. American Journal Of Orthopsychiatry. 40(2), 211-359