04. Inclusive Education
Paper
Navigating Uncertainties and Vulnerabilities. Personal Accounts of Research Participants in Supported Living Arrangements During and After the COVID-19 Pandemic.
Simon Reisenbauer, Sabine Mandl, Oliver Koenig
Bertha von Suttner Uni, Austria
Presenting Author: Reisenbauer, Simon
In recent years the social and political impact of various global crises has been at the centre of international (educational) discourse around the world. The COVID-19 pandemic represents one of the most noteworthy recent events that had immense effects on social and educational structures, as well as living environments and self-perceptions of individuals. The societal and institutional responses to the crisis often aggravated an existing experience of uncertainty for those already at the margins of society. The project Cov_enable: Re-Imagining vulnerabilities in times of crises, funded by the Austrian Science Fund FWF (project P 34641-G), has been researching the effects of the COVID-19 pandemic on supported living arrangements and schools in Austria.
One of the main principles for COVID-19 response taken by policy and decision makers focused on the protection of groups assumed to be vulnerable or at-risk. Vulnerability, as a concept, has journeyed through varying terrains of understanding, always shaped by historically and socially contingent conditions. Mackenzie, Rogers, and Dodds (2014), by offering a foundational understanding of vulnerability, present a taxonomy of vulnerability consisting of inherent and situational/contextual vulnerability – both closely intertwined. Drawing on this foundational taxonomy, Luna (2019) offers a more granular framework for evaluating layers of vulnerability. Central to Luna's conceptualization is the distinction between the origin and manifestation of these vulnerabilities. While some layers remain dormant, others can act as catalysts, either birthing new vulnerabilities or amplifying existing ones.
Employing a qualitative, participatory, and longitudinal approach, the project tracks how concepts and notions of vulnerability move back, forth, in-between and through the macro (policy and media), meso (organizations), and micro (individuals) levels. A central aim of our efforts is to discern how these evolving discourses shape new practices in inclusive education and supported living arrangements. Moreover, it seeks to understand the implications of these practices on the lives of individuals with disabilities and mental illnesses, especially those initially deemed and labelled as particularly vulnerable.
The focus of this paper lies on supported living arrangements that support people with intellectual, psychiatric, physical or sensory impairments in a variety of settings. The paper portrays the entanglements of personal agencies and experiences, processes of subjectivations, institutional structures, and material realities of selected research participants during and after the COVID-19 pandemic.
Methodology, Methods, Research Instruments or Sources UsedThe research design employed in the project is framed as a mixed Grounded Theory approach (Johnson & Walsh 2019: 523ff). Throughout the entire research process, basic principles of Grounded Theory Methodology (GTM) such as an iterative and constantly comparative procedure, theoretical sampling, coding and memo-writing have been applied (Clarke 2005; Charmaz 2006; Bryant & Charmaz 2019). In order to follow the experiences of the research participants, two main methods of data generation have been used: in-depth focused interviews (Wieser 2015) and digital audio and video diaries (Bates 2020) as a means of (self-)representation (Greig, Taylor & MacKay 2013; Noer 2014). Data generation at various stages made it possible to capture the experiences of the research participants throughout the course of the pandemic. From January to October 2022 initial interviews have been conducted, where after some participants continued to submit audio and/or video diary entries until August 2022. Additional interviews have been held in June to September 2022 with a final set of interviews in October 2023 to February 2024. A total of 35 voluntary individuals within different supported living arrangements participated in the research, 12 have taken part in the longitudinal component.
The data has been examined through different forms and approaches to data analysis. Strategies from Critical Discourse Analysis (Jäger & Jäger 2007) combined with mapping strategies from the Situational Analysis (Clarke 2018) were used to connect multiple perspectives covering structural factors as well as individual forms of agencies (Fairclough 2001, 123). A diffractive reading of the data (Barad 2007; Naraian & Amrhein 2022) enabled the team to illuminate the entanglements of lived experiences, individual perspectives, conceptual frameworks and the societal and material context that has been affected by the pandemic.
Conclusions, Expected Outcomes or FindingsThe paper follows the experiences and accounts of our research participants in different supported living arrangements, namely congregated supported housing mostly for people with intellectual disabilities, community-based care provision for people with mental health issues, and personal assistance for people with physical impairments. While the organisational settings themselves have been effected by the pandemic (Koenig & Barberi 2023), presenting personal accounts of the participants showcases the various trajectories and uncertainties the participants had to navigate throughout the pandemic.
Each case in this analysis uniquely illustrates how individuals with disabilities have ingeniously carved out spaces of meaning, agency, and affordances amidst the tumultuous uncertainties of the COVID-19 pandemic. These narratives not only highlight their resilience and creativity but also shed light on the ongoing impact of the pandemic in their daily lives. The study underscores a critical need for structural changes in supported living arrangements to foster such resilient agency. This necessitates a shift in policy and institutional approaches, advocating for a model of response-ability that truly listens to, learns from, and collaborates with people with disabilities. By doing so, we can ensure that their lived experiences and innovative coping strategies inform and guide effective crisis response and policy development, both in Europe and globally. As many European welfare states employ similar institutional settings, findings are highly relevant to other national contexts.
ReferencesBarad, K. M. (2007). Meeting the universe halfway: quantum physics and the entanglement of matter and meaning. Durham: Duke University Press.
Bates, C. (2020). Video Diaries. In P. Vannini (Ed.), The Routledge international handbook of ethnographic film and video (pp. 116–126). London ; New York: Routledge/Taylor & Francis Group.
Bryant, A. & Charmaz, K. (Eds.) (2019). The Sage Handbook of Current Developments in Grounded Theory. London: Sage.
Charmaz, K. (2006). Constructing Grounded Theory. A Practical Guide Through Qualitative Analysis. London: Sage
Clarke, A. (2005). Situational Analysis. Grounded Theory After the Postmodern Turn. London: Sage
Fairclough, N. (2001). Critical discourse analysis as a method in social scientific research. Wodak, R., & Meyer, M. (Ed.). Methods of critical discourse analysis. London: Sage, 121-138.
Greig, A., Taylor, J. & MacKay, T. (2013). Doing Research with Children: A Practical Guide. London: Sage.
Jäger, M., Jäger, S., & Jäger, M. (2007). Deutungskämpfe: Theorie und Praxis kritischer Diskursanalyse (1. Auflage). Wiesbaden: VS, Verlag für Sozialwissenschaften.
Johnson, R. B., & Walsh, I. (2019). Mixed grounded theory: Merging grounded theory with mixed methods and multimethod research. Bryant, A. & Charmaz, K. (Ed.). The SAGE handbook of current developments in grounded theory. Thousand Oaks, London, New Delhi: Sage, 517-531.
Koenig, O., & Barberi, A. (2023). Unterstützungssysteme für Menschen mit Behinderungen. »Enacting crisis« zwischen Aktionsspielraum und Hierarchie im Rahmen der COVID-19-Pandemie. SWS-Rundschau, 63(4), 307–324.
Luna, F. (2019). Identifying and evaluating layers of vulnerability – a way forward. Developing World Bioethics, 19(2), 86–95.
Mackenzie, C., Rogers, W., & Dodds, S. (Eds.). (2014). Vulnerability: new essays in ethics and feminist philosophy. New York: Oxford University Press.
Naraian, S., & Amrhein, B. (2022). Learning to read ‘inclusion’ divergently: enacting a transnational approach to inclusive education. International Journal of Inclusive Education, 26(14), 1327–1346.
Noer, V. R. (2014). Zooming in-Zooming out-using iPad video diaries in ethnographic educational research. RPPS Monografie, 85-96.
Wieser, C. (2015). Technology and ethnography – will it blend? Technological possibilities for fieldwork on transformations of teacher knowledge with videography and video diaries. Seminar.net, 11(3). URL: https://journals.hioa.no/index.php/seminar/article/view/2349
04. Inclusive Education
Paper
Disruptions, Risk and Vulnerability, Challenges and Opportunities in the Recovery Phase of the Pandemic
Joan Mowat1, Anna Beck2
1University of Strathclyde, United Kingdom; 2University of Glasgow, United Kingdom
Presenting Author: Mowat, Joan
This paper builds on papers presented at ECER 2020 and 2021, the former focussing on the first phase of a small-scale longitudinal study examining how current and former students on the Into Headship (IH) programme in Scotland supported their school communities during the first lockdown in the UK, with a particular emphasis on children and young people (C&YP) considered to be vulnerable through disability, poverty, being looked after or otherwise disadvantaged. The latter paper drew from the second phase of the study (see methods), drawing from the perspective of participants from the secondary sector (aged 11/12-17/18). This paper draws from the findings from the primary sector (aged 4/5-10/11) and a special school for children with severe and complex needs which shares a campus with a primary school.
The Incheon Declaration sought to ‘ensure inclusive and equitable quality education and promote lifelong learning opportunities for all’ (Sustainable Development Goal 4) [1]. Yet, even prior to the pandemic, the UNESCO Global Education and Monitoring Report [2] highlighted the dire circumstances of the 28 million children homeless and/or displaced due to conflict across the world and the 124 million children and adolescents not in schooling [3]. Likewise, the first global State of the World Report to focus on the mental health and wellbeing of C&YP drew attention to the disproportionate effects of the hardships experienced by the most disadvantaged C&YP and the fragility of support systems [4, 5].
Across the world, the pandemic has served to amplify and exacerbate these existing inequalities, particularly so for those who are marginalised through poverty, displacement and/or disability [6-9]. The disruption to health and social services in many countries and the failure to facilitate learning for disabled children, together with a lack of support networks, may have compounded mental health issues for C&YP so affected, putting pressure on family life and exposing them to greater risk of abuse and neglect [3,6]. The Health Behaviour in School Children report on Europe identified that adolescents from disadvantaged backgrounds were more likely to report negative effects of the pandemic in two thirds of countries/regions [7] whether or not they were in receipt of support from family, teachers, classmates or peers [8]. In the UK, a study published in Nov 2023 found that there were significant disparities in access to support services between children living in poverty and those living in more affluent areas, with the former more than twice as likely not to be in receipt of support from Child and Adolescent Mental Health Services [9]. Thishighlights the key role that schools play as places of learning but also places of safety and belonging.
The quality of school leadership is an essential element in creating schools which are equitable, inclusive, and compassionate in their approach. This requires a focus on the whole school community and on responsive and adaptive leadership which has at its heart inclusive practice and social justice [10]. School leaders have had to navigate an unprecedented landscape of complex and rapid change and therefore the quality of headship preparation programmes becomes crucial in ensuring that prospective headteachers can rise to the challenge.
This small-scale empirical study focusses on Into Headship, a masters-level programme delivered within a single academic year in partnership with Education Scotland. Through examination of the ways in which IH students supported their school communities during and in the aftermath of lockdown, the study seeks to ascertain the degree to and ways in which engagement with the IH programme had prepared them to meet the challenges in order to inform the development of headship programmes globally.
Methodology, Methods, Research Instruments or Sources UsedThis paper focusses on the second phase of a longitudinal, qualitative study, with phase one being an online survey based on an open-ended questionnaire administered to two cohorts of Into Headship students conducted in June 2020 towards the end of the first lockdown in the UK. 46 students responded to the survey. Phase 2, conducted in Dec 2022/Jan 2023, focusses on the period beyond the initial lockdown and, drawing from the findings of phase 1, has a specific focus on the wellbeing of the school community – pupils, staff and families. It has been conducted via. individual interviews with eight respondents to the initial survey, drawn from the secondary, primary and special education sectors. In addition to reflecting on how they had supported the wellbeing of their school communities beyond the initial lockdown, participants were provided with their response to the survey (phase 1) and asked to reflect on how close to reality their initial perceptions of the challenges to be faced as schools emerged from lockdown had been and whether there were challenges that had not been anticipated. Three focus group discussions have also been held with participants from each of these sectors. The focus group discussion had a broader focus, examining the response of the Scottish Government to Covid recovery; insights about leading in times of crisis; and insights to inform the development of the IH programme nationally.
Participants within the 2nd phase of the study were drawn from respondents to the survey who had indicated a willingness to participate. An open invitation was sent and criteria were drawn up to select the sample such that it was representative of respondents to the survey as a whole: the SIMD (Scottish Index of Multiple Deprivation) status of the school; urban/rural; sector (primary, secondary/special education); and gender of the participant. Participants attended a short briefing and informed consent was gained. Whilst the initial intention had been to conduct data-gathering face-to-face, this proved to be too complex to organise and interviews and focus group discussions were held via. Zoom and Microsoft Teams. Data have been analysed via. thematic analysis, drawing on a modified framework of King and Horrocks [11], generating, initially, descriptive and analytical codes and then over-arching themes.
Conclusions, Expected Outcomes or FindingsUNICEF [12] poses the question: ‘The world stands at a crossroads. We have a decision to make. Do we rally and unite to protect years of progress on child rights? Or do we allow the unequal recovery from COVID-19 to further marginalize the disadvantaged and increase inequality even more?’ (p.2).
This paper addresses this challenge through exploring the means by which prospective headteachers, in the midst of a rapidly changing policy landscape, have supported their school communities (staff, families and children) in the recovery period of the pandemic and the challenges they have faced. In particular, the findings identify barriers to the inclusion of children facing adverse circumstances, whether through disability, poverty, being care experienced or marginalised in any shape or form, and affordances. They provide insight into the approaches that prospective headteachers have adopted and their perceived efficacy which should inform the work of senior leadership teams in Scotland and beyond. They will demonstrate how priorities may have changed over time as schools have moved into the recovery phase. It will enable insights to emerge regarding the national response to recovery and will also identify those aspects of the Into Headship programme which have provided IH students with the knowledge, understanding, skills-set, confidence and resilience to address the needs of their school community and areas in which the programme could be strengthened, insights which can inform the development of headship preparation programmes more widely.
The case study within the Special Education sector illuminated the fragility of the relationship between the special education school and the mainstream school with which it shares a campus. The pandemic had served to disrupt the shared learning and socialisation which, pre-pandemic, the children had experienced, and a narrative of risk emerged as barriers were put in the way of re-establishing practice.
References1.UNICEF Office of Research. Children and the Sustainable Development Goals. Available online: https://data.unicef.org/children-sustainable-development-goals/ (accessed on 28/03/2019).
2.Slee, R. Defining the scope of inclusive education. Think piece prepared for the 2020 Global Education Monitoring Report - Inclusion and Education 2018.
3.Mowat, J.G. Working collaboratively with the school community to build inclusion for all. In International Encyclopaedia of Education Researching Disability Studies & Inclusive Education, 3rd ed.; Tierney, R.J., Ritzi, F., Erkican, K., Eds.; Elsevier: Oxford, England, 2023; pp. 85-97.
4.UNICEF. The State of the World's Children 2021. On My Mind: Promoting, protecting and caring for children’s mental health. 2021.
5.Mowat, J.G.; Beck, A. Rising to the Challenge of Creating Equitable, Inclusive, and Compassionate School Communities in the Recovery Phase of the Pandemic: The Role of Aspiring Headteachers. Education Sciences 2023, 13, 524.
6.United Nations Children’s Fund. Children with disabilities: ensuring their inclusion in covid-19 response strategies and evidence generation 2020.
7.Residori, C.; Költő, A.; Dóra Eszter, V.; Gabhainn, S.N. Age, gender and class: how the COVID-19 pandemic affected school-aged children in the WHO European Region: impact of the COVID-19 pandemic on young people’s health and well-being from the findings of the HBSC survey round 2021/2022; World Health Organization. Regional Office for Europe: Copenhagen, 2023 2023.
8.Erikkson, C.B.-N.M.; Lyyra, N.; Moor, I.; Paakkari, L.; Kulmala, M. A network of care: the importance of social support for adolescents in the WHO European Region during the COVID-19 pandemic: impact of the COVID-19 pandemic on young people’s health and well-being from the findings of the HBSC survey round 2021/2022; World Health Organization. Regional Office for Europe: Copenhagen, 2023 2023.
9.Holt-White, E.; Latham, K.; Anders, J.; Cullinane, C.; Early, E.; Montacute, R.; Shao, X.; Yarde, J. Wave 2 Initial Findings – Mental and Physical Health. COVID Social Mobility & Opportunities (COSMO) study Briefing No. 1. 2023.
10.Mowat, J.G. Building Community to Create Equitable, Inclusive and Compassionate Schools through Relational Approaches; Routledge: Abingdon, Oxon, England, 2022.
11.King, N.; Horrocks, C. Interviews in Qualitative Research; SAGE: London, England, 2010.
12.UNICEF. Preventing a lost decade: Urgent action to reverse the devastating impact of Covid-19 on children and young people. 2021, doi:978-92-806-5310-6.
04. Inclusive Education
Paper
The Everyday Dys-Appearance of Students with Dwarfism in Secondary Schools in the United Kingdom: Bodies Out of Place and Time
Antonios Ktenidis
University of Sheffield, United Kingdom
Presenting Author: Ktenidis, Antonios
Once we start talking in the classroom about the body and about how we live in our bodies, we’re automatically challenging the way power has orchestrated itself in that particular institutionalized space (hooks, 1994: 136-137).
Schools treat students’ bodies as an ‘absent presence’, that is, bodies are expected to fade in the background, as they are deemed 'disruptive' to learning. Nevertheless, not all bodies have the ‘ability’ to disappear, with some bodies appearing as ‘excessive’, including the disabled body (Mickalko, 2009).
This paper explores the lived experiences of young people with dwarfism of their secondary education in so-called inclusive schools in the United Kingdom. The research questions of the research were:
- How do young people with dwarfism experience and navigate different school spaces of their secondary schools?
- What are their experiences with their teaching assistants?
- What are the experiences with their class teachers?
- What are the experiences with their peers?
Drawing on phenomenological disability studies (Paterson & Hughes, 1999; Titchkosky & Michalko, 2012) and Leder's (1990) concept of 'dys-appearance' (which occurs when the body emerges problematically into direct consciousness), this paper looks into how the bodies of young people with dwarfism appeared as a ‘problem’ in secondary schools.In particular, it considers how the young people’s bodies (were made to) appear as ‘out of time’ and ‘out of place’ or how they dys-appeared in time and space.
Methodology, Methods, Research Instruments or Sources UsedThis paper draws on a qualitative study, which aimed to explore the secondary schooling experiences of young people (between the ages of 11 and 30 years old) with dwarfism in the United Kingdom. A narrative inquiry approach was utilised (Tamboukou 2013), with participants having the agency to choose their preferred mode of storytelling: oral storytelling (narrative, semi-structured interviews), digital storytelling (written storytelling on a private weblog and email interviews), visual storytelling (visual stories). This approach was aligned with inclusive research (Manning 2010), accommodating participants’ needs.
Participants were required to have a diagnosis of dwarfism, be between the ages of 11 and 30 years old, and be/have been educated in secondary schools in the UK. The choice of this age group aimed at looking into how young people with dwarfism who are still in secondary education (11–16 years old) are making sense of their schooling experiences as well as how young adults (17–30 years old) reflect on such experiences in hindsight.
For access to and recruitment of participants, I contacted on Facebook Messenger and via email the charities and associations of people with dwarfism in the UK, namely Restricted Growth Association UK, Short Statured Scotland, Little People UK, Little People of Ireland, Dwarfs Sport Association UK, and Walking with Giants. The initial communication was to ask them to advertise the research on their social media pages and communicate it to their members, therefore, these associations acted as gatekeepers.
Nineteen participants opted to participate in the research, including 9 teenagers and 10 adults. The sample ended up being quite diverse, including participants of both sexes, different ages, geographical locations, conditions of dwarfism (with achondroplasia being the most common), socio-economic and educational backgrounds, and participants with parents of ‘average stature’ and parents with dwarfism.
Ethical approval was granted by the University of Sheffield. The research adhered to the ethical guidelines of the Economic and Social Research Council (ESRC, 2015) and the British Educational Research Association (BERA, 2018).
Interviews were transcribed verbatim and a narrative thematic analysis was used to analyse data manually (Riessman 2005).
Conclusions, Expected Outcomes or FindingsThis paper presents stories of dys-appearance, which rendered young people with dwarfism as ‘out of place’ and ‘out of time. These stories highlight how young people with dwarfism navigate dis/ableist school timeframes and staturised (designed by and for the 'typically developing' child) spaces (Ktenidis, 2023), as well as how they disrupt them or resist them, through the introduction of crip (school) time. The psycho-emotional repercussions of dys-appearance and teachers' attempts to discipline such ‘unruly’ bodies are also considered. Finally, the disruptive potential of disability to reconsider schooling’s ableist developmentalist norms and inclusion are discussed.
ReferencesBritish Educational Research Association. 2018. BERA Ethical Guidelines: British Educational Research Association Ethical Guidelines. British Educational Research Association: London.
ESRC (Economic and Social Research Centre). 2015. “Framework for Research Ethics.” https://esrc.ukri.org/files/funding/guidance-for-applicants/esrc-framework-for-research-ethics-2015/.
hooks, bell (1994). Teaching to transgress: education as the practice of freedom. New York: Routledge.
Ktenidis, A., 2023. Navigating dis/ableist school playgrounds and toilets with geographic maturity: stories of young people with dwarfism from their secondary education. Children's Geographies, 21(4), pp.594-608.
Leder, D. (1990) The Absent Body. Chicago, IL: University of Chicago Press.
Manning, C. 2010. “‘My Memory’s Back!’ Inclusive Learning Disability Research Using Ethics, Oral History and Digital Storytelling.” British Journal of Learning Disabilities 38 (3): 160–167.
Michalko, R., 2009. The excessive appearance of disability. International Journal of Qualitative Studies in Education, 22(1), pp.65-74.
Paterson, K. and Hughes, B., 1999. Disability studies and phenomenology: The carnal politics of everyday life. Disability & society, 14(5), pp.597-610.
Riessman, C. K. 2005. “Narrative Analysis.” In Narrative, Memory and Everyday Life, edited by N. Kelly, C. Horrocks, K. Milnes, B. Roberts, and D. Robinson, 1–7. Huddersfield: University of Huddersfield Press.
Tamboukou, M. 2013. “A Foucauldian Approach to Narratives.” In Doing Narrative Research, edited by M. Andrews, C. Squire, and M. Tamboukou, 88–107. London: Sage.
Titchkosky, T. and Michalko, R., (2012). The body as a problem of individuality: A phenomenological disability studies approach. In: D. Goodley, B. Hughes, L. Davis, eds. Disability and social theory. Basingstoke: Palgrave Macmillan. pp. 127-142.
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