THRIVING IN CONFINEMENT WITH FUNCTIONAL DIVERSITY: THE ROLE OF TECHNOLOGY AND AUTOETHNOGRAPHY
Karen Anne Esther Hall
ADVERTIMENT. L'accés als continguts d'aquesta tesi doctoral i la seva utilització ha de respectar els drets de la persona autora. Pot ser utilitzada per a consulta o estudi personal, així com en activitats o materials d'investigació i docència en els termes establerts a l'art. 32 del Text Refós de la Llei de Propietat Intel·lectual (RDL 1/1996). Per altres utilitzacions es requereix l'autorització prèvia i expressa de la persona autora. En qualsevol cas, en la utilització dels seus continguts caldrà indicar de forma clara el nom i cognoms de la persona autora i el títol de la tesi doctoral. No s'autoritza la seva reproducció o altres formes d'explotació efectuades amb finalitats de lucre ni la seva comunicació pública des d'un lloc aliè al servei TDX. Tampoc s'autoritza la presentació del seu contingut en una finestra o marc aliè a TDX (framing). Aquesta reserva de drets afecta tant als continguts de la tesi com als seus resums i índexs.
ADVERTENCIA. El acceso a los contenidos de esta tesis doctoral y su utilización debe respetar los derechos de la persona autora. Puede ser utilizada para consulta o estudio personal, así como en actividades o materiales de investigación y docencia en los términos establecidos en el art. 32 del Texto Refundido de la Ley de Propiedad Intelectual (RDL 1/1996). Para otros usos se requiere la autorización previa y expresa de la persona autora. En cualquier caso, en la utilización de sus contenidos se deberá indicar de forma clara el nombre y apellidos de la persona autora y el título de la tesis doctoral. No se autoriza su reproducción u otras formas de explotación efectuadas con fines lucrativos ni su comunicación pública desde un sitio ajeno al servicio TDR. Tampoco se autoriza la presentación de su contenido en una ventana o marco ajeno a TDR (framing). Esta reserva de derechos afecta tanto al contenido de la tesis como a sus resúmenes e índices.
WARNING. Access to the contents of this doctoral thesis and its use must respect the rights of the author. It can be used for reference or private study, as well as research and learning activities or materials in the terms established by the 32nd article of the Spanish Consolidated Copyright Act (RDL 1/1996). Express and previous authorization of the author is required for any other uses. In any case, when using its content, full name of the author and title of the thesis must be clearly indicated. Reproduction or other forms of for profit use or public communication from outside TDX service is not allowed. Presentation of its content in a window or frame external to TDX (framing) is not authorized either. These rights affect both the content of the thesis and its abstracts and indexes.
THRIVING IN CONFINEMENT WITH FUNCTIONAL DIVERSITY: THE ROLE OF TECHNOLOGY AND AUTOETHNOGRAPHY
_____________________________________________
KAREN ANNE ESTHER HALL
DOCTORAL THESIS
2022
KAREN ANNE ESTHER HALL
THRIVING IN CONFINEMENT WITH FUNCTIONAL DIVERSITY:
THE ROLE OF TECHNOLOGY AND AUTOETHNOGRAPHY
DOCTORAL THESIS
Supervised by
Dra. Blanca Deusdad Ayala
Departament d’Antropologia, Filosofia i Treball Social
Tarragona
2022
‘Nothing About Us without Us’
James Carlton
This dissertation has received funding from the European Union's Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No. 713679, the project SoCaTel. A multi-stakeholder co-creation platform for better access to long-term care services (H 2020. GA num. 769975) and from the Universitat Rovira i Virgili (URV)
To my late parental team Stella, Wilma and Errol Hall this qualification was achieved as a result of the early
foundations they laid.
ACKNOWLEDGEMENTS
My special tribute to my grandmother, mother and uncle, Stella, Wilma and Errol Hall.
Thankful to my creator for the blessings and opportunity to honour their memory.
Many thanks to my Supervisor Dr. Deusdad Ayala who graciously allowed me to shine by building on my strengths and knowledge and helped me in pursuing this goal.
Special thanks to Dr. Moldovan, Project Manager and Staff of Martí Franquès Program Co-Fund Project, who worked as a well-oiled team on the logistics of my stay and travel. Always ready to accompany me to many NIE meetings and to offer many more types of support.
Thank you to the Staff and Coordinators from the Doctorate office & Library who shared timely and useful information and are always ready to answer questions and offer guidance.
Many thanks too, to training course Professors who shared their expansive knowledge on research innovation, intermediate Spanish, Mendeley Desktop, Databases, Presentation skills, Article writing, Thesis layout and much more.
I am also grateful to my secondment supervisor, Prof. Teeppo Kroger and the staff and fellow students at the Unviersity of Jyväskylä (Finland), who worked to make my stay successful.
I deeply thank the co-authors of the publications presented who shared with me the pain of writing and rewriting articles so they could be adjusted for each journal that we submitted too. Your hardwork and patience are deeply appreciated.
My special thanks goes too to Editors and scribes for their assistance in while I was struggling with a painful shoulder. The accent that you found tough to understand sometimes, and the eventful journey of interpreting my thought process as I wrote the papers.
I would like to also thank the acceptance and support from the conference committees and appreciation of me and my co-authors' work. Thank you for giving us the forum to share with the drafts before they were published.
Special mention of Maria Thersa Vives and family, Dr. Marija. Djurdjevic and family, Pedro Fernando Marta Prieto, and Xavier Rocamora, and others who have been supporting me in many situations in the past three years.
Finally, my gratitude to the European Union funding for this international Doctorate program and the other funding support received from the SoCaTel project and the Universitat Rovira i Virgili.
List of Figures
Figure 1. Organigram on Disability Studies as theorical background of this
dissertation ... 41
Figure 2. Thes SoCaTel project ... 59
Figure 3. Having coffee in the Department (DAFITS) ... 59
Figure 4. Halloween before the pandemic ... 60
Figure 5. Happy birthday on-line! ... 60
Figure 6. With the Supervisor of my Secondment Teppo Kroger (CoE AgeCare at University of Jyväskylä, Finland) ... 61
Figure 7. CoE AgeCare Mid-term conference at Tampere University ... 61
Figure 8. With my Supervisor. Coming back from summer ... 62
Figure 9. With my PhD colleagues ... 62
List of Tables Table 1. Covid-19 Impact on People with Disabilities ... 31
Table of contents
1. INTRODUCTION ... 25 Self introduction ... 25 Research question and objectives ... 28 The rationale: Why the importance of this topic? ... 29 Premisses to the study ... 32 Compilation of papers ... 33 Contribution 1 ... 33 Contribution 2 ... 34 Contribution 3 ... 35
2. OBJECTIVES AND THEORETICAL FRAMEWORK ... 37 A Social Justice matters ... 38 Functional diversity ... 39 Disability theory and models moving from Charity to Critical Socio-political
ideas ... 40 Social Media as a communication tool for the disability communities ... 41 The role of the digital divide in highlighting inequalities... 42 My autoethnography ... 45
3. METHODOLOGY... 47 Role of this paper in PhD ... 47 Method and techniques ... 47 Proceeding ... 48 Role of this paper in PhD ... 49 Method and techniques ... 49 Proceeding ... 50 Role of this study in PhD ... 53 Method and techniques ... 53 Proceedings ... 54 Selection of the methodology and fieldwork ... 55 Synthesis of the research techniques implemented ... 56
4. MY PhD ADVENTURE ... 59
5. RESULTS: COMPILATION OF PAPERS ... 63 5.1 CONTRIBUTION 1 ... 63 5.2 CONTRIBUTION 2 ... 77 5.3 CONTRIBUTION 3 ... 107
6. CONCLUSIONS ... 127 7. REFERENCES ... 133
ABSTRACT
ABSTRACT
The objective of this study has been to give voice to people born with physical disability in examining their own experience of survival during the lockdown by outlining a variety of resources (psychological, economic, and technological) they used for working, communicating and building strength. The qualitative methodology used were based on the thematic analyses of commentors from YouTube video and internet sources during Covid-19 pandemic and lockdown and in my own autoethnography. Results show that people with disabilities even flourished in difficult situations if they understood their strength, when provided with right economical resources and when sufficiently skilled to use technological tools. The most prominent findings of this (personal) exploration refer to the benefits of technology as a peer support tool and the value of autoethnography for the building of individual resilience and agency.
RESUMEN
El objetivo de este estudio ha sido dar voz a las personas nacidas con discapacidad física al examinar su propia experiencia de supervivencia durante el encierro, esbozando una serie de recursos (psicológicos, económicos y tecnológicos) que utilizaron para trabajar, comunicarse y hacerse fuertes. La metodología cualitativa utilizada se basó en los análisis temático de los comentarios de los vídeos de YouTube y de las fuentes de Internet durante la pandemia y el cierre de Covid-19 y en mi propia autoetnografía. Los resultados muestran que las personas con discapacidades incluso prosperaron en situaciones difíciles si comprendieron su fuerza, cuando se les proporcionaron los recursos económicos adecuados y cuando tuvieron la suficiente habilidad para utilizar las herramientas tecnológicas. Las conclusiones más destacadas de esta exploración (personal) se refieren a los beneficios de la tecnología como herramienta de apoyo entre iguales y al valor de la autoetnografía para la construcción de la resiliencia y la agencia individuales.
RESUM
L'objectiu d'aquest estudi ha estat donar veu a les persones nascudes amb discapacitat física en examinar la seva pròpia experiència de supervivència durant la tancada, esbossant una sèrie de recursos (psicològics, econòmics i tecnològics) que van utilitzar per treballar, comunicar-se i fer-se forts. La metodologia qualitativa utilitzada es va basar en les anàlisis temàtiques dels comentaris dels vídeos de YouTube i de les fonts d'Internet durant la pandèmia i el tancament de Covid-19 i en la meva autoetnografia. Els resultats mostren que les persones amb discapacitats fins i tot van prosperar en situacions difícils si van comprendre la seva força, quan se'ls van proporcionar els recursos econòmics adequats i quan van tenir prou habilitat per utilitzar les eines tecnològiques. Les conclusions més destacades d'aquesta exploració (personal) fan referència als beneficis de la tecnologia com a eina de suport entre iguals i al valor de l'autoetnografia per a la construcció de la resiliència i l'agència individuals.
1. INTRODUCTION
‘’I have been asked, “how did you do it Karen? especially when the odds are so much against you?’’
I often reflect on that question. How did you do it? I humorously would ask, “Do what?”
Context-specific discourse analysis would show that there was a comparison being made inherent to this question. A comparison of me on one side and the others on the other. Who are these others? From a Disability Theory perspective, others mean non- disabled persons.
Self introduction
I am Karen Hall. I came from Guyana, South America, to Tarragona, Spain to pursue my doctorate studies. I arrived in September, 2019. I was just finding my way around the province and beginning to build a network of support services when the Covid-19 pandemic hit in early 2020, and the country went into total lockdown for approximately four months.
I am a person with functional disabilities (term will be discussed later) who has been judged as incompetent, useless and without a future, based on my appearance, and I had to struggle all my life to prove my competence. I was cast aside and judged indiscriminately as undeserving until some people with that opinion interacted with me and realized, from our conversations, that despite disabilities I am a person with professional goals and ambitions.
All my life I wanted to become an academic researcher. I was repeatedly told that such a career was not possible for me, that I would not be able to withstand the rigors of education and working life and that access will always be a major problem for me. I was told that my options were either to be a maid or a cook helper. Furthermore, people considered that I will even put my employers at risk because they will be culpable if I fall at the workplace.
However, none of those fears have been materialised. For three decades I have been educating myself to the Master level and beyond, working in schools, government ministries, disability commissions and at universities. Some other positions I held were a High School business teacher, a teacher trainer at the University, and a national and regional coordinator for disability policy and special education, respectively. I managed to have sponsored projects with the national funding of Guyana state as well as from international agencies. I think I have extensively proven that the naysayers and doom predictors were wrong.
It was not an easy feat being raised and living in a country with policies strongly based on the charity model of disability, that is, where it was preferable to afford sporadic handouts to vulnerable groups of people rather than nurture their talents and potential.
It was even tougher to build a career amidst the stress, struggles and barriers that were culturally embedded and prevalent within my country. One of my friends once told me that if it takes regular-looking people seven attempts to progress in our country, it will take me seventy tries to just find a pathway to traverse and to beat the odds.
When I was writing my autoethnography as a part of this PhD, the autobiographical overview I had to go through affected my mental health because it reminded me of segregation, discrimination, frustrations, anger, and disappointments I have been facing during my life. But I realised that I owe this effort to those allies and supporters, especially to my parental team (my mum, my grandmother and uncle) who supported and championed me. They exposed me early to different strategies of life survival and career building, for example through reading and discussing self-help and motivational books which I found guidance from in trying times. They grew me up with surviving sensitivity and skilling me to cope with difficulties. The same way as I used to learn from others when I was a child, now I am in a situation to share my experiences with others, who can learn from me. This thought inspired and motivated me to continue my life’s narrative in spite of unpleasant memorizing process, because the results of my study will have a rewording social impact: ‘’Give a man a fish, and you feed him for a day. Teach a man to fish, and you feed him for a lifetime.’’
Should I demand an apology for my achievements from those who limited me in my capabilities and aspirations? - these are my humorous thoughts and feelings. I tried not to use up my energy in anger or arguments to convince those doubters. Instead, I worked towards accomplishing my life goals, and whoever wants to stealthily review my life to see if they were right (that I won't achieve what I desired) will certainly be disappointed. I hope that my research will contribute to the implementation of programs which will upgrade and improve the situation and living conditions of people with disabilities.
During my Disabilities’ Studies Degree, I learned that policies and laws were created to form a layer of protection for vulnerable groups to be finally included into national and international social plans. When the United Nations (UN) developed these policies protecting people with disabilities in the 90s, it was with the idea that country-specific political and social improvements will eventually be upscaled worldwide. From my experience, the laws are not as robust as they need to be, because discriminatory attitudes and practices are still lagging in many countries and cultures. This needs to be pointed out because during the early stages of the pandemic, a large number of societies automatically reverted to these ancient practices. The fear among me and my peers is that we have been living under a veneer of stability that the laws brought to our lives, which is so thin that any virus can crumble it. In other words, the fragility of that protection, unfortunately, has been demonstrated worldwide, as well as the fact that in worst moments we only were able to rely on ourselves and eventual peer support online.
My life situation and experience commit me to talk about how people with functional disabilities experience life events such as Covid-19 pandemic and restrictions. Writers with disabilities do have experiences that others could learn from in order to shape better societies. Interestingly, although situational and contextual experiences may differ among disability communities, if we fail to share our attitudes, feelings, sufferings and experiences among the academic networks, we are allowing ourselves to be smothered once again and fall back into the devaluation mire of invisibility.
Due to the fact that I was trained early to be self-sufficient, even though I was born with many physical and visible deficits, my functional level over time became higher even then my parental team envisioned. Actually, I surpassed them in areas such as education and employment, and they would have been very proud of me if they could see me today. It was not until I began to travel to conferences in the 90s that I saw modified or adapted equipment and aids for disabled people. In 1998 I attended Ability Exhibitions and was amazed that these existed. In my country, I have never seen anything similar.
My parental team efforts have placed me squarely fitting into the definition of functional diversity. It is not a term used in my country. They use another one: differently abled.
In Northern America, I was referred to as a high functioning person with a disability. In my opinion, the labels do not matter while I can achieve my goals, but for academic labour, medical and other purposes, I fully understand why the labels must be used. I experience certain physical and even health limitations from time to time, which needs to be reported to support offices, so they administer services appropriately taking into account specific accommodation or adaptation requirements at universities and other workplaces.
Research question and objectives
The general objective of this dissertation is to give voice to people with disabilities to self-assess their own experiences of survival during the Covid-19 health crisis and lockdown, outlining a variety of resources (technological and psychological, amongst other) that helped them to thrive.
The main research question of this dissertation has become:
RQ: How people with functional disabilities have experienced Covid-19 pandemic and lock down? Which have been the main factors for the effective survival of such a difficult situation? And which role technology has played for care/peer support and community support during it?
The specific research questions to be answered are:
1. How people with care needs, functional diversity survived during the confinement?
Were the health issues of people with functional diversity considered during the pandemic? What strategies and tools they used for surviving and thriving in these adverse times?
2. What lessons could be learned from our narratives?
3. How effective has been the use of digital technology as a tool for peer support?
The aim of this thesis is to shade length at how the use of technology has helped and overcome the situations of isolations and lockdown suffered by people with functional diversity, facing significant challenges during the confinement, drawing from my own experience, writing my autoethnography of (how I lived and built my resilience in front isolation and situations of health crisis) and collecting data from internet.
The thesis is a compilations of papers: 1) A study on how the first COVID lockdown affected people with functional disabilities in a dramatic way by means of YouTube video analyses; 2) The pandemic acted as a catalyst that trigger memories and experiences of my last crisis and made be reflect on my all life and how I built my resilience a long my live course. How I have acted to overcome situations of crisis and adversities. What have been my strengths along life, and in particularly, during this pandemic and the importance of the role of technology on it; 3) a collaborative book chapter on digital co/creation as a methodology which permits all stakeholders participation, including end-users even in a context of lockdown or impediments of mobility.
The rationale: Why the importance of this topic?
I share through my own experience as a person with functional diversity, how I lived during the lockdown and the consequences, using and autoethnographic method, as well as underlining as one of my contribution to the field that technology played an
important role in community support in the middle of the isolation that we have suffered and the pain and changes to our care and health that this has caused to us.
Research about people with functional diversity in recent was mostly performed by scholars or professionals in the field (Brook and Johnson, 2020; Barker, 2020; Dunn 2019). Little, however, has been written by people with disabilities themselves. Their situation during the COVID-19 lockdown has been largely made invisible and almost nothing was said about the worsening of their health situation due to cancellations of their healthcare and welfare services, or their experience of extreme isolation and fear (Hall et al., 2022). The purpose of this thesis is to bring some attention to an often overlooked group of vulnerable people as we waded through lockdown and the pandemic during 2020-2022.
The research is built on the premise that the population of persons living with various types of disabilities is approximately one billion or 15% of people worldwide (WHO, 2021). Not surprisingly, the existing research points out that “governments are not acknowledging and taking advantage of all the potential of these vastly underutilized section of populations’’ (PAHO/WHO, 2011, 21). Human rights and universal healthcare for people with functional disabilities is also at risk when there is a health crisis. Furthermore, the right to life for disabled people was heavily threatened during the initial stages of the pandemic in 2020 (WHO, 2020b).
Many Disability Studies programs offered at universities of the UK, USA and other parts of the world placed emphasis on the invisibilization of this collective that not only was marginalized but also overlooked and put at risk of remaining as an unprotected powerless group. The WHO website displays a factsheet on disability stating that
“people with disabilities are 2-4 times more likely to die in disasters and emergencies than those without disabilities” (WHO, 2020b)
This table below shows the dramatic situation suffered by people with disabilities:
Table 1. Covid-19 Impact on People with Disabilities
Population Data Estimated population Percentage Covid
Casualties Percentage with disabilities (appx)
World population 1B 15% 6.6M 60%
European Population 155M 19% 1.9 _
Spainish Pupulation 3.4M 10.7% 115,000 _
Source: European Union Agency for Fundamental Rights and Spanish Natinal Statistic. Own elaboration
In general, the disability community is quite powerless. People with functional diversity live at the whims of their nondisabled counterparts who are given the responsibility for implementing protective policies for them, leading to campaigns such as the “social model on disability” and “nothing about us without us” movements (Oliver 1997, Carlton, 1998). Despite the evident progress towards inclusion of the disability community into society, the improvement of its life conditions has been slow. This was one of the reasons why the United Nations developed the International Convention on the Rights of Persons with Disabilities CRPWD (2006) so that the group could be afforded the opportunity to acquire some basic protection from discrimination in welfare, health care and other essential services offered to the general population in countries worldwide.
Unfortunately, there is no uniformity in the way the Convention drives county laws, policies, and regulations. As a result, specific countries have various services accessible to their disability population while others do not. For example, many developing countries claim not to have sufficient resources to implement existing policies. So, even if there are protective laws, they become only paper-based rather than ones people with disabilities could rely on (Afifi, 2020; Berger, 2016).
As a person born with a congenital physical disability, I have endured many discriminatory experiences from a young age, many under the guise of care. It was a form of care that did not afford me opportunities to grow as an individual. As most of challenges have been faced in my past, the lessons, strategies, and achievements stemming from there situate me as an expert in functional diversity and justify my autoethnographic walk into my doctoral dissertation. Among those lessons from the past, there are several strategies, techniques, and tools that I have been using during
pandemic to survive and thrive despite adversity, such as a sense of humour, yoga breathing, memories of support, love and care, digital communication with my peers and social participation via online platforms and social media.
Premisses to the study
Conceptualization of terms disability and functional diversity for the purpose of this thesis:
I prefer to use the term functional diversity (Guzman & Toboso, 2019; Patston, 2007) rather than disability, because disability focuses on the body disablement and suggests deficiency. However, humans can function with different kinds of deficiency.
Another term used as an alternative to disabilities is functional disabilities, putting an accent on different ways of functioning adapted to disability. This term is commonly used in the Anglo-Saxon research tradition in this field.
The third concept behind my theoretical discussion in the field of Disability Studies is ableism. In the literature, the critical disability theory goes beyond mere documenting the existence of oppression. Instead, it also asks the question: What purposes it serves and How it can be overturned. This question is often in conflict even with a liberalist approach to disability, which has depicted the experience as a monolithic view, or as an unfortunate aberration of fate (Campbell, 2012; Siebers, 2008; Rioux &
Bach,1994).
The concept of culture should also be considered. It is important for the anthropological study of disabilities because the lens of culture may be applied to the conceptualisation of disabilities in a variety of ways. For instance, disabilities may be considered as a cultural phenomenon -linked to cultural norms, practices and values that influence conceptions of disabilities- and inadvertently support ableism (Reid- Cunningham, 2009). Ableism is widely seen as an attitude that invalidates the physical capital of disabled people in a complex and multifaceted way, including the construction of architectural barriers and the lack of tolerance of bodily differences (Loja, Costa, Hughes & Menezes, 2013). However the disability community worldwide is taking a stance against contemporary societal views and are resisting the accumulated history of disability oppression and ableism through advocacy, human rights policies and publicized shared personal narratives (Hall, et all, 2022).
Compilation of papers
This dissertation is a compilation of three texts, two papers and a book chapter which address different aspects of the survival during the Covid-19 lockdown from the perspective of people with functional diversity. The scientific contributions of this thesis are the following:
Contribution 1
The first result delivered is a paper on attitudes, feelings and experiences of people with functional diversity during the first lockdown and it bears a title "How Did People with Functional Disability Experience the First COVID-19 Lockdown? A Thematic Analysis of YouTube Comments".
Its objective is to examine people's experiences of struggle through an unprecedented recent pandemic and confinement which affected their mental, emotional and physical well-being, including the long-term post-pandemic consequences they are still struggling with. What pre-existing conditions they had and how the pandemic exacerbated their physical and mental condition.
We used the qualitative discourse analysis methodology wading through the vignettes while scrutinizing comments on the video to identify common themes. Those were coded under four categories: lifestyle changes and isolation, peer support, medical discrimination and mental health.
Data were gathered from a VICE video diary tackling the impact of Covid-19 on persons with disabilities. In this paper, we explored the mentioned themes and contrasted our findings with the existing literature, from a human rights and disability studies’ theoretical standpoint.
The paper has been published in the International Journal of Environment Policy and Public Health and is part of the Special Issue "Changes in Psychic Life and Psychological Treatments during COVID-19 Pandemic" Guest editors: Dr. Attà Negri;
Dr. Francisco Ortega and Dr. Arianna Barazzetti and the reference is:
Hall, K. A. E., Deusdad, B., D’Hers Del Pozo, M., & Martínez-Hernáez, Á. (2022).
How Did People with Functional Disability Experience the First COVID-19
Lockdown? A Thematic Analysis of YouTube Comments. International Journal of Environmental Research and Public Health, 19(17): 10550
https://doi.org/10.3390/ijerph191710550 . PMID: 36078263; PMCID:
PMC9518368.
Contribution 2
The second contribution is an autoethnography of my lockdown survival. This more
inductive methodological approach has permitted me to find common treats among my various experiences of coping with difficulties and belittlement due to my functional diversity, connecting the present practices with past experiences I recalled. In doing so, I looked back in my life, and a common treat has emerged: effective survivals as building blocks of my resilience. I overviewed and acknowledged in this endeavour different sources and resources of my resilience.
The aim of this paper is to explore how I—a person born with a physical disability living alone in a foreign country—was able to cope with COVID-19 lockdown. Through evocative autoethnography, I reviewed risks/coping strategies recalling the lessons drawn from my childhood in the care of two supportive women. Then, performing an analytical autoethnography, I self-assessed my lived experiences through a social science lens. A theoretical validation of my personal story helped me to acknowledge how resilience in my life had been built and was mobilised in the face of the pandemic.
This paper has a more methodological approach and has been accepted for publication in the journal Qualitative Inquiry:
Hall, K.A.E; Djurdjevic, M. & Deusdad, B. (in press). On how I got through COVID-19 lockdown: An autoethnographic approach to resilience in disability. Qualitative Inquiry.
Contribution 3
The third contribution is a collective book chapter on the concept of digital repertoires of the people with functional diversity and older adults. It is concerned with the utility of the SoCaTel platform (H2020 project GA num. 769975, 2017-21) in which framework my PhD thesis developed and was co-funded.
In this research, we are wondering the acceptance of this technology among older adults/people with functional diversity and its effectivity as a virtual support in a lockdown context, and consequently, its significant potential to become a digital repertoire of this specific social group. The qualitative analysis is based on the fieldwork carried out during the SoCaTel project, while testing a platform in parallel digital co-creation sessions in Europe (Spain, Finland, Ireland and Hungary). It sheds new light on older adults’ feelings, attitudes, and choices, while using technology for online co-creation of LTC services.
This contribution is part of a book resulting from an integrated work of different scholars from Finland, UK and Spain working on the use of new technologies amongst older adults and it is in the last round of peer-review before publication:
Deusdad, B, Djurdjevic, M. & Hall, K.A.E ( in press). Older adults participating in digital co-creation of long-term care services: the SoCaTel platform experience. In Riitta Hänninen, Sakari Taipale and Laura Haapio-Kirk. Embedded and everyday technology - Digital repertoires in an aging society. London: UCL press. Open access.
Finally, this thesis is organised in following sections: a Theoretical framework, consisting in a revision of literature in the fields of disability studies, technological innovation and its impact on disabilities, as well as studies of resilience; followed by a Methodology section, in which I present the qualitative approach I used in my research activities, delving into the use of different qualitative techniques while conducting research.
These two initial sections are followed by a section on Results, in the form of three contributions provided within this thesis by compilation of articles (two papers and a book chapter). Finally, there is a Conclusions section, tackling the limitations of this
study, avenues for future research, summing up answers to research questions and explaining their social and scientific value. To close with the references used in this dissertation.
2. OBJECTIVES AND THEORETICAL FRAMEWORK
The literature has shown that the topic of physical disabilities in doctoral and research studies has not garnered as much attention in the last decade as other types of disabilities such as psychological impairments. In trying to fulfil this gap I focused substantially on people with functional disabilities, as there was not much literature on this topic available after 2011 (Oliver, 2013). This led me to consider that the primary purpose of this thesis should be to bring attention to a group of vulnerable people with functional diversity, their experiences of the recent health crisis and the mechanism to cope with difficulties such as discrimination, exclusion, isolation, lack of healthcare services, loneliness, etc. This research has the following three specific objectives:
1. Knowing better whether people with functional diversity and care needs have their human and healthcare rights taken into consideration during the Covid-19 pandemic or not;
2. Delving deeply in personal experiences and extract the lessons that can be learned from our narratives;
3. Getting to know how effective a technology can be as a tool for peer support during the periods of restricted mobility (lockdowns) and beyond.
During the Covid-19 pandemic, it became evident that there was little integration of healthcare services (Deusdad, 2020). The huge influence of healthcare for quality of life and tremendous consequences of its lack got evident especially on the example of negative experiences of people with functional diversity during the health crisis. For example, the articles coming out from developed countries, such as the United Kingdom, Canada and United States of America have pointed out that the laws that protect the rights of persons belonging to this group were treated as separated from actual state response to healthcare needs (Abrams & Abbott, 2020; Emerson et al., 2021; Jeste et al., 2020; Shakespeare, Ndagire & Seketi, 2021). The consequence was that many essential healthcare services for people with disabilities were arbitrarily cancelled. Therefore, a suppression of human rights can be evidenced, as well as of
social justice protective policies for people with functional diversity. Not surprisingly enough, authors in this field had already identified this gap during the first tsunami proposing corrective measures, which was ignored (Burchardt, 2004: Priestley and Hemingway, 2007), and consequently, lead to the repetition of situations of neglect.
Therefore, future research in this field needs to focus on how to fuse the current disjointed policies, integrating health care policies, disability policies and the human rights principles so that service delivery during disasters can be improved for disabled people. Once the laws are no longer disconnected, cohesion is built and translated into health emergency practices, the slighting, discord and prejudices that the disability community faced would not occur again when a disaster, epidemic or pandemic happens (Oliver, 2013; Shakespeare, Ndagire, and Seketi, 2021).
A Social Justice matters
In the text titled ‘Nothing About Us without Us’ by James Carlton (1998), the author addressed the lack of decision to include the policies’ target groups (end-users) in the planning processes of service design. New services cannot really benefit them if they are only tied to the perspectives of professionals, politicians, and carers. That necessary component of including the beneficiaries' perspective is crucial for preventing the social justice infringements that unfortunately occurred during the recent pandemic (Carlton, 1998).
Scholars continue to point out that if inclusive practices are not taken seriously and decisively incorporated into the mainstream and day-to-day practices, it would be disastrous for the disability community (Priestley, and Hemingway. 2007). In this regard, recent studies on the Quadruple Helix approach in service design (Carayannis, Barth & Campbell, 2012; Carayannis & Campbell, 2009) including all stakeholders in the social policies’ and health services’ design process, have brought this debate to the forefront. New co-creation methods that are being studied and used for service design fostered this debate and brought the value of co-creation (Osborne, 2018).
With improved end-users involvement in planning processes, they are empowered and become assertive citizens (Griffiths et al, 2009).
Functional diversity
The functional diversity approach to disability is grounded in critical sociological theory, spearheaded by the ideas of Pierre Bourdieu and Michael Foucault (Ferrante, Palacios, Romañach & Vázquez, 2016). The term functional diversity is a relatively new approach to disability but is gaining traction in many European countries. The idea is to apply a more human and less negative understanding of the concept of disability, which would take into consideration the people, their needs, capabilities, agency, experiences and challenges, instead of only highlighting their deficits.
The aim is to shift the social thinking towards inclusion of competencies of the person's body. For example, how well could this person function within the umbrella term of disembodiments? (Palacios, Ferreira & Ferrante, 2021). This is an alternative view of disabilities based on a psychological approach which attempts a shift in thinking from a negative and dependent vision to a more positive and fruitful view of people with functional disabilities. Moreover, the dependence is something common to human beings (McIntyre, 1999). Discriminatory views are usually attached to physical and other impairments while overlooking the competences of those persons. The goal is to correct the misconceptions detected in attitudes, practices and approaches to disability via the use of different, more correct and less stigmatizing terminology.
Functional diversity, as proposed by Rodríguez Ferreira and Ferrante (2021: 25), emerges as a term to confront the social exclusion of this group: “Society condemns them to ostracism, oppression and discrimination, not due to the body divergences or limitations, but due to attitudes of misguided care culturally steeped in religious beliefs”. The group of people with functional diversity is powerless and without resources to fight against these limitations. Therefore, they need laws and policies to fill that powerlessness gap (Burchardt, 2004). From this perspective I started this study, and a picture began to emerge showing the failure of societies to honour that protection from the inception of the lockdown. It rather seems that societies, within their legal frameworks, immediately resorted to the medical model practices on disability based on ‘cure or ignore’ philosophy (Olive, 2013; Carlton, 1998). To people categorized as disabled, that was a very frightening and demoralising situation to live in, no matter how brief it may have been.
Disability theory and models moving from Charity to Critical Socio-political ideas
In the 70s, the disability theory and the extending social model of disability had its humble beginnings in academic research (Barnes and Mercer, 2004; Beresford, 2000;
Devlin, & Pothier, 2006; Oliver, 2013; Sharkspeare & Watson, 1997). Over time it gained traction and by 1981 (United Nations International Year of the Disabled) each era had a specific model, for example, the charity rehabilitation or the medical models (Marks, 1997). The growth exploded in the 90s with the United Nations Equalization Policy, and later with the Convention on the Rights of Persons with Disabilities (2006).
This brief background is necessary because it lays the foundation for situating the unfortunate events of lockdown in 2020. People in the community fought hard and built a level of legal protection for themselves and others in Western countries only to watch it crumble practically overnight (Lund, Forber-Pratt, Wilson, & Mona, 2020). Safety issues gained importance paradoxically negating at the same time the needs of vulnerable persons (Burchardt, 2004). The pandemic provided the evidence of the existing gaps and the huge differences between reality and policies, forcing a demand for closing this gap, which concerns equally researchers, policymakers and public administration.
The social analysis theories did not specifically investigate the relationship between social media and disability. As a result of literature review, it can be stated that social media is not yet seen as a communication tool of major importance for the disability community, as a little has been said on how the one supported the other (Bouvier, 2015). Yet, with the advent of the pandemic, the social media emerged as a valuable vehicle for data acquisition and collection. Inadvertently, the Communication Theory also came into play, as day-to-day practices of chatting got registered within the Comments section of the video (Hall et al., 2022). People corrected, trained, argued, advised, comforted and championed one another through social media, illustrating the growing power of digital communication within the developed world (Fujiura and Yamaki, 2000).
Figure 1. Organigram on Disability Studies as theorical background of this dissertation
Source: own elaboration
Social Media as a communication tool for the disability communities
The use of technology has been seen as a double-edge source in Disability Studies, considered as an opportunity but also as a barrier for those with accessibility problems (Gregor, Sloan & Newell, 2005). It has mainly focused on assistive technology (Bouck
& Long, 2021; Frauenberger, 2015) and accessibility issues (Mak, Beckman & Bohn, 2013; Trevisan & Cogburn, 2020) but not as much on the use of technology as social tool for fostering participation and social integration of people with functional diversity (Manzoor & Vimarlund, 2018). The ethic approach to the use of technology in vulnerable populations was not addressed in this dissertation because the study focuses on the free and independent choice of end-users (resulting from their agency) rather than an institutional healthcare imposition.
Social media has emerged as a way to bridge online the divides of societies. Many scientific articles refer to inequalities the disability community faced in the last two years (Kuper, Banks, Bright, Calum, & Shakespeare, 2020). The associated theories in the reading ecosystems theory, social analytical theories and communication (Bouvier, 2015) looked at the value of social media as a communication tool for people with disabilities especially during the lockdown, because suddenly they started to talk
to each other about issues affecting them with an unprecedented regularity. The social diaries on platforms such as Youtube helped to open the chasm when they started to interview people with disabilities on Covid-19 impact on their lives (Goggin & Ellis, 2020).
The solace was that social media provided a space to voice those experiences and force our societies to take a thorough look at how the community has been treated.
Furthermore, it was a space of peer support where to share their experiences (Hall et al., 2022). The unfortunate result is that because the entire world struggled through the pandemic, the needs of this group could once again be overlooked or ways found to justify side-lining them, in favour of other more socially acceptable groups (Mikolai, Keenan and Kulu, 2020).
Although social media has provided the platform for the group to be voraciously vigilant and in an effort to evidence some of the rampant discrimination that was happening.
They were still powerless to effect immediate changes. The narratives and vignettes in the YouTube video comments section showed that many persons with functional disabilities already lived in isolation pre-pandemic (Okoro, Strine, McKnight-Eily, Verlenden & Hollis, 2021). However, there were times that they went out to appointments and events or received visits from social or care groups (Hall et al., 2022). But the pandemic caused them to exist in stark isolation, actually cutting off the little social life they had (Kuper, Banks, Bright, Calum, & Shakespeare. 2020).
Fortunately, social media filled that gap somehow. As the Vice video illustrated, people were able not only to make new friends but to share ideas, and importantly, to support each other through difficult and uncertain times (Hall et al., 2022).
The role of the digital divide in highlighting inequalities
The term digital inequities to me refers to hardware quality and access to appropriate technology for the section of the population covered in this thesis, that is persons with functional diversity. The digital divide or inequalities are not always a clear concept.
Frequently, the term seems to have a generational gap slant (younger people understand technology and older people do not, even though they both have access to it). It is also linked to both financing and accessibility in many countries (World Bank Development Report, 2016).
Many persons with functional diversity cannot access the digital tools they need because they are too expensive, and sponsorship is almost non-existent in their communities (for example, most of the hardware I bought came from payment plans on Amazon I had access to while studying abroad).
The World Bank set the foundations for understanding digital divide and inequalities, as their research showed linkages between poverty and lack of digital tools. During the recent pandemic, as a student in Spain, I was able to access certain tools both in online and offline stores to assist me in my studies. Staying at home during lockdown added another dimension to my understanding of digital divide and inequalities, especially since that was the only way to pursue my studies. A good example is a laptop model experiences: Apple versus Windows software and the level of accessibility they had in times of lockdown that could take the stress of long-term usage. The Apple model, in my experiences, was limited to apple applications.
The digital inequalities fall into two relatively broad categories of users: a) the solo or independent owner of equipment, and b) the multiuser (living with other users). A person living with a disability who requires some adaptation to hardware in order to use a PC, for example, can encounter some difficulties if he/she is not the sole user of the equipment. I once had the experience of living with a blended family using one desktop PC. There were constant conflicts based on time, adaptation misunderstanding, misuse and differences in priorities. For a solo user, the adaptations are very expensive and the data may not be easily transferable to a new computer (moving from one desktop to another, moving outside the home e.g. for work in the library). During the Covid-19 lockdown, even though I was the sole user of my hardware, I had faced many adaptation issues which was hindering my work progress, especially since the mobility options got extremely limited. I downloaded several voice accessibility assistance apps and software, which I had to rely totally on, so I learned their flaws and inadequacies for academic rigor quite quickly. For example, the voice apps did not always predict and interpret my words correctly. I assumed this was because of my Caribbean accent, and the mismatch with the way these applications were programmed.
“AI” was interpreted as “EA”, “hiccups” as just “cups”, amongst other examples, frequently producing several errors in just one sentence. After a few paragraphs the recognition is even worse, to the point where I do not even recall what the original wordings were because the sentences lost their intended meaning, the experiences also stated by scholars (Ewoldt, 2018). The other hiccup was handwriting tools that were supposed to interpret my handwriting and turn it into typed text. Because of a hand injury, I needed the extra support since it made writing less painful than typing.
Difficulties in interpreting handwriting are quite common to the point sentences lost their intended meaning (Ewoldt, 2018).
Sadly, in my case, also the transfer from paper to app in press form was not very successful. The software incorrectly transcribed my handwriting. I had machine language and symbols in the transfer that was not on the handwritten version.
Eventually my supervisors and I discussed my options and the university decided to hire a scribe to assist me a few times per week. That proved to be a lot more successful than the voice typing and handwriting apps. Even though some of the scribes' English was their second language and my Caribbean pronunciation was difficult to understand at times they were able to call me up and ask what I was saying or request for me to further flesh out a thought.
Based on my experiences, I can conclude that the scribes were more effective than the software. The financial section I cannot adequately comment on because I bought the software or app, while the scribe was paid for by the university. The advantage of a scribe is that we can talk it out. On the other hand, the advantage of the app is that I do not have to wait for the transcripts to be done over a few days or a week. The literature dwelt with types of users as different types of users have different needs regarding versatility, locking in the software or the cost. In assessing my practical journey as technology user for study purposes, I can state that future research should take an in-depth look at accessibility of available apps, if they address user needs for accuracy and versatility during a heavy academic use (Svensson, Nordström, Lindeblad, Sand, Björn, Gustafson & Nilsson, 2021).
My autoethnography
According to Marak (2015), autoethnography is a methodology appropriate for self- contextualizing in personalized life journeys. The goal of autoethnographies is to accurately depict self in ethnographic autobiographies based on the self rather than a more objective chronicling where personal stories lose their essence. The pandemic is a good example to show how objective or abstract recording of narratives would have lost the essence of people’s experiences. It would be a struggle to write on mental health battles during the pandemic without acknowledging the lived experiences of the people.
However, I do not focus exclusively on my feelings of discrimination. My contribution is in line with the emancipatory disability approach (Oliver, 1997; Barnes, 2001;
Berger, 2016) and I also tackle experiences of self-care, thriving in difficult situations and resilience (Luthar, Sawyer & Brown, 2006). I address equally the positive aspects of functional diversity, such as the previous experience in isolation and restricted movement, as well as in facing adversities and growing from survivals. People born with physical disability is the only group that had been already prepared for isolation when, with the outbreak of COVID-19 pandemic, the mobility limitations were suddenly imposed all over the globe (Chou, Chen, & Kröger, 2021; Hall et al., 2022).
In this dissertation it became important the use of one-self narrative, so I performed an autoethnography (Chang, 2016) to express in detail my inner experience, emotions, feelings and attitudes, providing the perspective of a person born with a physical disability while viewing functional diversity during the pandemic. The combination of evocative and analytical autoethnography has permitted me to acknowledge and gain awareness along the process of my resilience features built during years. I could review the different factors that set the basis for thriving in the context of adversity: the support of my close family experienced during my childhood, the academic accomplishments, but it is also fair to mention factors connected with social development, such as grants and fellowships that provided me with time and resources necessary for education and growth, a support I received from institutions in developed countries. More detail on the theoretical background regarding the autoethnographic method can be found in the Results section (Publication number 2).
3. METHODOLOGY
This doctoral thesis consists of several interrelated minor pieces of academic work:
one book chapter and two scientific articles that have been accepted for publication in renowned peer-reviewed scientific journals. Although the scientific content displayed in these three studies comprises a coherent entity when seen through the lens of PhD general objectives, the investigations were developed independently, each of them using the most appropriate methodology for meeting specific objectives.
The studies are not displayed in a chronological order (dates of their design and development), but in line with the thematical composition of PhD thesis as a coherent whole aiming to explore agency of people born with physical disability, and especially the role of technology in fostering their resilience in adverse situations.
Therefore, parts of this PhD, being published as autonomous entities, have their specific roles established in a PhD thesis as a whole as well, as they tackle different aspects (factors, sources, or resources) of strength and agency in people born with functional disabilities. These three works are the following:
1) The article “How did people with functional disability experience the first COVID-19 lockdown? A thematic Analysis of YouTube comments”
Role of this paper in PhD
This article provides evidence on technological tools that give voice to people with disabilities, facilitate connection and exchange of experiences, while enhancing their agency, wellbeing, and resilience. It is achieved through the analysis of stories / statements of people who engaged in a commentary of the Youtube video.
Method and techniques
The specific goal was to examine how people with functional disability reported their experiences, feelings and attitudes of COVID-19 lockdown in a sample of YouTube comments, so as to shed light on new practices during the pandemic and the coping
mechanisms this particular social group developed to combat exclusion and loneliness.
The VICE video published on Youtube (https://www.youtube.com/watch?v=- aGUuA5aDic&list=PLJZQF4tvTgMR3Yq9g6WfJb4IoKZpe-lpH, accessed on 17 August 2022) contains interviews conducted with three people with physical impairment, who were asked about their personal experience during the first stay-at- home order. Data have been collected from a chat that accompanies the video.
Thematic analysis has been selected as an approach that facilitates a systematization of data needed for an in-dept analysis in line with the existing theoretical corpus about the disability and agency.
Interestingly, YouTube and other social media sites present publicly available data (that must be anonymized when presented in the research) which are important testimonies about the behaviour and attitudes of marginalised groups. Valuable data can be gathered from these platforms that allow powerless people to describe their experiences and express their concerns [40] talking clearly about discrimination and lack of social justice (Way, 2015). These are the new technological tools to voice people’s experiences and needs (Bouvier, 2015; De Fina, A.; Georgakopoulou, 2016;
Georgakopoulou, 2016).
Proceeding
We analysed the first 100 comments on the video posted in spring 2020 during the COVID-19 lockdown. Most comments ranged in length from one to two paragraphs.
We used these comments to access the fleeting experiences of people during the first lockdown, when the global health crisis meant that few researchers were able to conduct qualitative interviews about the unfolding disaster.
Although the source was open-source data, the ethical treatment of personal data required anonymisation of commentors’ names for the purposes of publishing this paper in the scientific journal.
To analyse the comments, we used thematic analysis, which is an inductive, qualitative method that permits a fresh approach to the data [39,44,45]. This approach
allowed us to note similarities, differences, and trends across commenters’ reported experiences. We constructed a set of 19 codes inductively after reading the data, without working from a pre-conceived set of categories [46]. We then grouped the codes into four themes: 1) lack of access to care and services, 2) isolation & lifestyle changes, 3) mental health consequences, and 4) peer support. The data is classified, categorised and analysed across the themes, to foster reflexion and the final interpretation provided in the paper.
2) The paper “Autoethnographic approach to strengths in disability: exploring resilience in lockdown contexts”
Role of this paper in PhD
In my doctoral thesis, this study is the one that provides a background /framework for the exploration of agency / resilience of people with congenital impairments. The objective is to identify barriers to as well as sources & resources of support for mental health and survival in critical situations.
Method and techniques
The qualitative analysis has been chosen as the most suitable approach because it facilitates an accurate assessment of feelings, attitudes, and experiences. The paper aimed at shedding light on a variety of factors and tools (distinguishing between emotional, technological, and economical) that altogether bring protection / strength to cope with restrictions and discrimination.
Concretely, I used the autoethnographic method (Chang, 2016) to scrutinize sources and resources of my own resilience, while living alone in a foreign country, being born with physical disability, during the lockdown imposed because of the spread of the COVID-19 pandemic.
My target was to establish relationship between my previous experiences and my current responses to exclusion, isolation, physical pain, and risk of falling into depression, showing links between my past learning —largely drawn from the lessons of a childhood in the care of two supportive and empowering women in a context of poverty and discrimination— and my exercise of agency in the face of pandemic.
I combined two types of autoethnography: the evocative and the analytic. Through evocative autoethnography (autobiographical self-narration of my risk experiences and coping mechanisms), I managed to grasp into the critical elements in my trajectory that led to development of agency. This was followed by analytical autoethnographic approach through which I self-assessed my lived experiences through the lens of Theory of Resilience and Disability Studies. The theoretical understanding provided me with guidance to evoke and extract from my memories the most relevant details that helped me to understand the building blocks of my own resilience.
My aim was to explore my strengths -all sources/ resources of empowerment that helped me survive in past and present challenging situations as a person born with physical disability. I delved into both recent situation of COVID-19 lockdown and previous experiences from which I learned important lessons.
Therefore, the autoethnography showed to be a method that not only allows the voicing (sharing knowledge) of minority groups, but also contributes to the self- development of researcher through progressive acknowledging of his/her own condition /psychological growth (Dunn, Uswatte, & Elliot, 2012). (
The example I provide of the combination of evocative (performative) and analytical approaches to the study object contributes to the validation of this relatively new method of qualitative research. The results obtained from this approach are satisfactory: identification and acknowledgement of differing factors for strength and agency building, showing a variety of resources available for the specific group of people with functional disabilities, in line with study specific objectives.
Proceeding
Conducting autoethnography, I used the purposive sampling technique choosing myself to be voiced, being black woman1 from Guyana born with physical disability in
1 K. Spates & B. C. Slatton in “Repertoire of Resilience: Black Women’s Social Resistance to Suicide”, Social Problems, 2021, postulate that protective factors in black women’s lives act as buffers against suicide: “They employ a repertoire of resilience that is made up of interrelated scripts that value Black women’s (1) shared experiences of struggle, (2) centuries of strength building, and (3) the counter-evaluation of privilege. We argue that by counter-framing marginalizing experiences of poverty, discrimination, and low social status, this cultural repertoire provides Black women with an empowering self-conceptualization that fosters their resistance to suicide.” Similarly, Spates at al. in “Keeping Ourselves Sane: A Qualitative Exploration of Black Women’s Coping Strategies for Gendered Racism” remark the role of social support in shaping black women coping strategies.
a peculiar supportive family setting. My aim was to collect the most relevant meanings and interpretations regarding personal resilience and the use of agency in challenging situations, in line with the study objective. This way, I embedded myself in the qualitative tradition of autoethnography, viewing my life experience as “meaningful data in its own right” (Ellis, Adams, & Bochner, 2011)2”.
The H. Chang’s method recommends finding balance between theory, the life experiences, and the culture they are situated in. It is referred to as “a method creating a balance of reflection, analysis, and interpretation” (Snyder, 2015).
Therefore, I retrospectively wrote about my life experiences that stem from being part of a specific cultural background. However, besides telling stories about my life, as an autoethnographer, I also analysed these events through the lens of history and cultural changes that occurred both in global North and South, affecting and transforming my life circumstances, such as the change from Charity model of disability to Social model.
In this endeavour, I crossed the research-participant divide being a sample and a researcher at the same time, as required in this qualitative method. However, to keep scientific distance and objectivity, I needed to altern between group and solo work. I was assisted by my colleagues from the Anthropology Department in the collection of autobiographical materials, helping with a targeted data collection (via dictation or transcription of the recorded material, as well as holding conversations with me) and organisation, categorisation, and systematisation of collected data. We applied a thematic analysis approach for data collection and data analysis. The role of my colleagues during the phase of analysis and interpretation of data was mainly to ‘hold a mirror’ so as to guarantee a multi-perspective view and scientific rigor during my autobiographical interrogation.
My research developed in several phases, combining deductive and inductive reasoning:
● Inductive stage, developing a hypothesis (phase 1);
● Pre-deductive stage, organising the study (phase 2);
2 See in D. J. Berger (2016), p. 473.
● Performative stage, grounded on inductive reasoning, consisting in evocative ethnography3 - biographical research (phase 3);
● Analytic deductive stage, consisting in analytic ethnography, a summative data assessment while testing the hypothesis – contrasting my findings with the existing literature / theoretical framework (phase 4);
● Synthesis stage, constructing meaning (phase 5).
The research study was conducted during the COVID-19 pandemic and during its aftermath. Research activities were located mostly in a virtual space, as Teams meetings.
In a pre-deductive stage, I organised the categories to sort out data used in this investigation, and to design time periods of my research. I used three types of data extracted from my memories, conversations with my colleagues, and theoretical exploration. Conversations were necessary to keep distance and avoid solipsism during my autobiographical data analysis. On some occasions, my colleagues from Rovira i Virgili University merely typed my memoires, annotating my associated thoughts and feelings. In other moments, their assistance got shape of discussions about relevant aspects of my life, and their ‘holding up mirrors to me’ allowed me to explore my subjectivity more fully in their company.
Once the categories were identified, allowing data to be collected in a systematic manner to ease the further analysis, I proceeded with my inductive performative reflection. This evocative effort was structured in two sections:
1) a description of the COVID-19 pandemic lockdown - addressing various risks I had to confront, together with my responses to adversities,
2) a performative exploration of my past, locating in my biography the risks I had faced and (positive) responses I experienced in my childhood and early adulthood.
3 Anderson (2006) makes a distinction between analytic and evocative autoethnography. “Analytic autoethnography is directed towards objective writing and analysis of a particular group, whereas evocative autoethnography aims toward researchers’ introspection on a particular topic to allow readers to make a connection with the researchers’ feelings and experiences.”