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The Digital Age:
Youth, Disability, and Mental Health
Luca A. Muir
390102752
Department of Anthropology
The University of Auckland
Supervisors: Susanna Trnka & Christine Dureau
This project is funded as a part of Professor Susanna Trnka’s Marsden project, “Ka Hao
te Rangatahi: Fishing with a New Net? Rethinking Responsibility for Youth Mental
Health in the Digital Age”.
A thesis submitted in fulfilment of the requirements for the degree of Master of Arts
in Anthropology, The University of Auckland, 2022.
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Abstract
Drawing on 15 semi-structured interviews with Aotearoa youth, all of whom actively discuss
disability and/or mental health online, alongside textual analysis of a variety of posts collected
through approximately 100 hours of observation among 15 online community groups and tag
searches across the social media platforms Facebook, Reddit and Instagram, I investigate how
these New Zealanders engage in and with digital space. A core argument of this thesis is that social
media forums and communities provide youth with a place to create a sense of solidarity in a
society dominated by ableist assumptions. However, these spaces are also constructed and encoded
with these ableist assumptions. As a member of the disabled community examining these issues
and what it means to consider mental illness to be a “chronic disease” – or disability – of youth
(McGorry et al., 2007:S5) were incredibly interesting. Digital technologies and social media
provide spaces for the hidden histories of socially marginalised groups, such as the disabled and
mentally ill, to be given their own voices. In this thesis, I investigate how some disabled and
mentally ill youth in Aotearoa use the freedoms, information-sharing capacities, and community
features of digital and social media (such as memes, photos, and YouTube content) in their
communications of their experiences and perspectives. Language, as a social practice, plays a
critical political and social role in how disabilities and mental health are understood in Aotearoa
and, therefore, how disabled and mentally ill youth communicate on social media. These
explorations lead to understandings of the relationship between voice and the activist, something
which is non-linear and temporally situated. Activism and the activist are influenced by social
norms, often being placed as the Other, leading to temporal retreats from activist activity. Social
media provides a space and opportunity for disabled and mentally ill youth to reclaim their
autonomy and their voice, which in traditional ableist spaces have been taken from them.
Additionally, the Covid-19 pandemic has illustrated our digital technologies of care. The dual use
of online groups for social support and information-seeking demonstrate how these social media
platforms can perform as what Long (2020:250) calls “vital technologies of care” through which
users possess the capacity to sustain relationships and wellbeing. They also demonstrate what I
have termed “long social Covid” – the shared sense of social consciousness that reflects the social
impacts of Covid-19. I suggest that digital communication, by enabling autonomy, voice, and
validation, provides vital spaces for intra-group support that can develop into acts of broader social
activism. However, social activism is temporally sensitive, an activity which people can and do
move in and out of according to their capacities, needs, and ability to engage in activism; the
retention of their voice is not dependent on their participation in social activism.
Keywords: activism, ableism, Covid-19, digital technologies, disability, mental health, mental
illness, social media, social model, voice
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To my mentors, friends, pets, and caffeine: I couldn’t have done this without you.
Thank you for all your support.
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Acknowledgements
First, I must acknowledge and offer my sincerest thanks to my supervisors, Susanna Trnka and Christine
Dureau, without whom I would not have been able to complete this thesis. Thank you both for your
continuous support, encouraging words, and constructive feedback throughout the course of this project
and the last few years. The latter half of 2021 was by no means easy for any of us, and I will be forever
thankful to your continued enthusiasm and guidance, especially in the moments when I couldn’t see the
light at the end of the tunnel. Susanna, thank you for all of the opportunities and additional support you
have given me which have allowed me to expand my knowledge, make connections, and complete this
project to a calibre I otherwise wouldn’t have been capable of.
I was lucky enough to be the Master’s student on Susanna Trnka’s Marsden project “Ka Hao te
Rangatahi: Fishing with a New Net? Rethinking Responsibility for Youth Mental Health in the Digital
Age”. The opportunities this offered to me were invaluable in so many ways to this project and to my ability
to complete it. Furthermore, I wish to thank the wonderful scholars Pikihuia Pomare, Jemaima Tiatia-Seath,
Monique Jonas, Kerry Gibson, Miriama Aoake, Sanchita Vyas, Imogen Spray, KDee Ma‘ia‘i, Shauney
Thompson, and Thibaut Esprit, whom I have been fortunate enough to work with because of this project.
To my participants who gave me their time and shared themselves and their stories with me, I offer my
most humble and sincere gratitude and thanks. Without you this project would not be as rich or rewarding
as it has been. It was a pleasure and privilege to speak with you all and hear your stories. To the admins
and moderators who allowed me to be a part of their groups, thank you: without your generosity and ability
to see the value in this project I would not have been able to connect with my participants.
To my family and friends, I cannot put into words my gratitude to you all for listening to my rants
about library access, my struggles to find material, my excited ramblings when I connected an idea or my
despair at scrapping a chapter. To my flatmates, thank you for putting up with my 2:00 and 4:00 am coffee-
making antics and listening to me, even when you didn’t know what I was talking about. To Christine and
Mike, thank you for all the love you have shown me and the interest you have shown in my project, and for
reminding me to get some sleep when I was deep down the rabbit hole writing until 6:00 am. Hannah, thank
you for helping me keep my sanity throughout this last year with late night drives, Crash Bandicoot
tournaments, movie nights, adrenaline-inducing antics, and just reminding me to seize moments and live in
them. Thank you to everyone who supported my coffee addiction and forced me out of studying only to
allow me to throw ideas past you and ask if something made sense. Finally, to my grandparents, thank you
for your support, love, and assistance as I finished this project and prepared for my next life chapter.
This has by no means been an easy journey for me, but having the support, encouragement and
understanding of so many different people in my life as well as proving to myself that I am capable of
completing something like this has made it all worth it. If someone ever says that you can't do something
the best response is to work hard and prove them wrong.
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Table of Contents
Abstract ........................................................................................................................................... ii
Acknowledgements ........................................................................................................................ iv
Introduction ..................................................................................................................................... 1
Critical definitions: What is at stake in terminology .................................................................. 7
Methodology ............................................................................................................................... 8
Research in the time of Covid-19 ............................................................................................. 12
Literature review ....................................................................................................................... 13
Historical background .......................................................................................................... 13
Recent developments ............................................................................................................. 14
Chapter outline .......................................................................................................................... 21
Chapter One: Hidden Histories ..................................................................................................... 25
Disability activism in Aotearoa over the last 130 years ........................................................... 28
Māori views of disability ....................................................................................................... 29
Historical disability activism ................................................................................................ 31
Disability activism today .......................................................................................................... 35
Mental health activism in Aotearoa over the past 130 years .................................................... 39
Māori views of mental health ................................................................................................ 39
Colonial views of mental health ............................................................................................ 41
Mental health activism today .................................................................................................... 45
Conclusion ................................................................................................................................ 49
Chapter Two: The Politics of Language ....................................................................................... 51
Languages of disability and mental illness ............................................................................... 52
Language in practice ................................................................................................................. 58
Application of social discourse and language ........................................................................... 64
Conclusion ................................................................................................................................ 72
Chapter Three: Lives Online ......................................................................................................... 74
Disability and Mental Illness in Digital Spaces ............................................................................ 74
Disability presentation online ................................................................................................... 75
Politics of design ....................................................................................................................... 77
Filtered lives: Mental health online .......................................................................................... 79
Disability and mental illness online: Determinants of youth participation............................... 82
Conclusion ................................................................................................................................ 89
Chapter Four: Sociality during Covid-19 ..................................................................................... 90
Duality of social media in Covid-19 ......................................................................................... 91
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Detrimental online behaviours .................................................................................................. 98
Pseudo-nationalism and civic duty in Covid-19 ..................................................................... 104
Disability experience in Covid-19 .......................................................................................... 109
Disability and Covid-19 .......................................................................................................... 111
Mental health and Covid-19.................................................................................................... 113
People or profit: What matters more? ..................................................................................... 116
Conclusion .............................................................................................................................. 119
Conclusion .................................................................................................................................. 121
References ................................................................................................................................... 126
Appendix ..................................................................................................................................... 146
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Introduction
At the outset of this project, in March 2021, New Zealand was “Covid free”. We worked
together in 2020 and achieved the goal of eliminating Covid-19 from the community. We
enjoyed a Covid-19-free summer with no major scares or significant changes in national alert-
level settings, causing us to grow complacent with our freedoms (Ng, 2021), until the
implementation of alert level 4 at 11:59 pm on August 17. Generally, people had stopped
routinely scanning in at locations, stopped wearing face coverings except where mandated,
abandoned the routine hygiene procedures, and largely stopped paying such close attention to
news relating to Covid-19 – because we had achieved community “elimination” we lulled
ourselves into a false sense of complacency regarding how we lived in a Covid-19 world (Ng,
2021): we so badly wanted to “return to normal”, to be physically, rather than just virtually,
present with one another that we stopped being conscientious about a global pandemic we had
no hope of keeping at bay forever and did not consider whether a return to “normal” is what
we ought to be striving for.
While Covid-19 is by no means the main focus of this thesis, there is no denying the
substantial impact and influence the pandemic has had on the participation of youth (16–24-
year-olds) with disabilities and mental illnesses in digital spaces. I was particularly aware of
this as a large proportion of my observational and interview research was conducted during
higher alert-level settings. Online discussions of these topics by youth is nothing new: social
media, particularly in its inception, was regarded by many as a form of journaling, somewhere
for people to put their random thoughts, to talk about things they could not discuss with
“grown-ups” or in person. The internet has offered something unique to those growing up with
it: an endless supply of knowledge and data with which people can freely question and explore
everything and anything. In my teens, I used social media to explore what was out in the world
beyond my small island life. I did not go looking for anything, but I did stumble upon things
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that I needed to stumble onto. It was through engaging in fandom on Tumblr that I began to
question my sexual identity, to google “how to know if you’re gay”, “what is love”, “what does
it feel like when you like someone”. Social media has been the space where I, and many others,
have explored and developed the more personal and private aspects of identity for years.
Through going on YouTube and stumbling onto transgender content, consuming it, and relating
to it for years before putting the pieces together and beginning to google “how to know if you’re
trans”, reaching out to openly trans people online to talk to them, and joining anonymous trans
groups on Reddit, I came to accept that, like being gay, I am trans. Digital and social media
freed me to explore these and many more things that I felt, at the time, ashamed of or that I had
to hide before I knew for certain. As one online user wrote, “I had to tell someone, but it’s not
really the kind of thing I can tell anyone I know.” For all youth, but especially for minorities,
digital and social media is a lifeline. I do not have many disabled friends and try not to talk too
much about my chronic pain and fatigue with my able-bodied friends because they do not “get
it” and I do not want them to think I am complaining, a sentiment echoed by the disabled and
mentally ill interview participants of this study. The disability forums I am a part of on social
media, the disabilities accounts I follow that validate my experiences, are a lifeline when I am
having a bad pain day.
Researchers are often driven by their own interests stemming from questions and
curiosities cultivated from their lived experiences. At time of writing, I am a 23-year-old
recently out transgender man. I live with invisible disabilities such as chronic pain, chronic
fatigue, and dyslexia, and I have been forced to fight socially and medically for years for
recognition of these. I have also suffered from the mental illnesses PTSD, depression, and
anxiety, for which I am in therapy and take medication. In my mid-teens I attempted suicide,
in large part because of my then-undiagnosed disabilities and the dismissive attitudes of
doctors, adults, and my peers. Because of all these compounding factors, I was told that I was
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lazy, stupid, and would never perform well academically. I never imagined I would go to
university, let alone complete a master’s thesis, and this is a proud moment for me. What makes
me even prouder is the response I had from the community and that I could do this research for
them. This is a small snippet of who I am and where I come from in relation to this research.
This is the perspective from which I engaged with my respondents and the communities they
represent – one of personal understanding and experience.
My positionality as someone who was regarded, and feels like, an “insider” with my
various groups of study gave me privileged knowledge and perspective that I believe enabled
me to engage in more insightful and open conversations than would have been the case with
an “outsider”. Of course, this position is not without its costs. In particular, I had to actively
work against projecting my personal perceptions and assumptions onto my respondents and
their experiences. There were times in reviewing my interview transcripts where I was unsure
of the extent to which I succeeded in achieving this balance. For instance, both my respondents
and I focused on how men’s mental health is perceived and represented in New Zealand society
(at the time of these interviews I still identified and understood myself as a woman) but,
unthinkingly neglected to discuss how women’s mental health is discussed and represented. I
also had to ensure that my privileged access did not lead me to reveal “community only”
knowledges that would not have been spoken to an outsider. No doubt, like all researchers, I
could add to this list of risks and gains arising from my own position and relationships with the
community I engaged during my research. Ultimately, though, while my own subjectivity and
interests are present in this research, my close and empathic situation lends value to the study
in a field of study often characterised by too much distance. It is from my personal knowledge
and understanding that my questions for this research began to develop. I knew that despite all
the wonderful literature out there on the topics of youth, disability, digital technologies, and
mental health, there has been very little on how these topics intersect. I address this lacuna by
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considering how disabled and mentally ill youth use digital technologies. I also examine the
interplay between mental health and other forms of disability, asking whether having a
disability influences experiences of mental health and mental illness. I consider why disabled
youths’ experiences of mental health and illness have not been more deeply explored in popular
media or academic literature. When I began this study, I had seen next to no research on the
experiences of disabled individuals with mental illness, a group within the disabled community
I knew to be substantial. There is an undeniable link between having a disability and
experiencing poorer mental health outcomes and higher instances of mental illness, something
attributed to an array of social determinants and strains such as finances, social accessibility,
accessibility to services, embodied belongings, and chronic pain (Inhorn & Wentzell,
2012:109; also see Aneshensel et al., 2013; Dashiff et al., 2009; Groce, 2004; McGorry et al.,
2007; Mulvany, 2000; Rose, 2018; Webb et al., 2008; Zaffar, 2021; Zito et al., 2001). This
research into the intersections between mental health and disability gives us the opportunity to
acknowledge a fundamental social problem and take steps to better the lives of all disabled
citizens.
My project focuses on the perspectives of youth because they – we – are still in the
processes of gaining autonomy and grappling with identity and social roles, which are affected
by contemporary systems and policies. Youth are a fascinating demographic because we are
trying to figure ourselves out while at the same time taking increasing responsibility for our
care and wellbeing in convoluted social systems, such as that of healthcare. This exploration
of self creates opportunities for community information-sharing and care. Looking at people’s
lives online is a critical aspect of this because people tend to be more open and honest, about
some things, online, as explored later in Chapter Three. How social media forums and
communities provide youth with a place to create a sense of solidarity in a society dominated
by ableist assumptions is a core argument of this thesis. The intra-group support in these
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communities is critical to the development and expansion of activism. However, this is not a
forgone conclusion. I argue that understanding the relationship between voice and the activist
requires new consideration as it is not a linear progression but one that is temporal and
situational. Activism and the activist are influenced considerably by what we consider socially
normal. However, when one is constantly situated as the Other often there will come a point
when they retreat from activist activity – demonstrating a more nuanced and complex
relationship between the development of voice and the activist. An example of this can be seen
in the video “Trauma. Transphobia. And the Internet. (why I left for 2.5 years)”, posted March
5, 2022, by Ash Hardell, a non-binary YouTuber, in which they explain that they left YouTube
(where they championed queer rights and representation) because of the barrage of “targeted
harassment” from which they developed PTSD and a tick disorder (Hardell, 2022). They go on
to demonstrate the non-linear ebbs and flows of the activist:
Watching my friends take a stand against the digital abuse that they and other
trans people endured was healing. And it’s empowered me to share my
experience. […] My trauma response is still very much alive and kicking. While
I feel super empowered by the recent shift in tone surrounding trans discourse,
that empowerment is simultaneously cautious and delicate. […] I’m worried that
by opening up and sharing my story and confessing to some of my personal self-
doubts and struggles in the process, folks may try to weaponise those disclosures
against me later. […] I still feel compelled to use my voice. (Hardell, 2022)
My research has revealed that disabled youth feel dismissed and excluded from their
own care because of the ableist assumption in society, and often ignored by medical
professionals when they try to assert their own expert knowledge about their conditions and
the relationships between their physical, mental, and spiritual health. Disabled youth are doubly
disadvantaged in these interactions. While “youth” are expected to be gaining autonomy and
authority over and taking responsibility for their bodies, if there is an “adult” present society
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generally defers to them. Individuals with disabilities are often spoken about, rather than
spoken to (Trnka & Muir, 2021). Hera, a 21-year-old Pākehā/Māori disabled woman and
disabilities activist shares a story of taking her disabled brother, who is visually impaired,
autistic, and awaiting an autoimmune disorder diagnosis, to the gym. The trainer was
intimidated by his [her brother’s] disabilities. And he [the trainer] kept looking
to me and speaking to me, […] as I was sitting next to my brother whose
appointment it was. He [the trainer] would just keep looking to me when it was
my brother’s exercise we’re talking about.
This is a common situation: if a visibly disabled individual is with an able-bodied-looking
individual then questions and conversation are directed to the latter, not the former, creating an
instance of voice poverty – “the inability of people to influence the decisions that affect their
lives and the right to participate in that decision making” (Horst & Miller, 2020:225, 229) in
traditional spaces of engagement. Voice poverty is a key concept throughout this thesis,
recurring in each chapter and discussed in depth in Chapter Three. Recognising voice poverty
in relation to embodied experiences of disabled and mentally ill youth is critical to
understanding why and how they engage in digital spaces. These spaces give them the
opportunity to reclaim their autonomy and their voice, which in traditional ableist spaces have
been taken from them.
My research is an examination of the ideas and concepts that demonstrate the ableist
assumptions that dominate everyday interactions in Aotearoa1 and the way these assumptions
exclude non-able-bodied people from being active in society, as well as of how disabled youth
respond. Despite being a member of the disabled community, there are so many ableist
assumptions that I was blind to before doing this research because they did not affect me, and,
as one of my interlocutors explains, “everyone has internalised ableism”. I examine activism,
1 Aotearoa is the Māori name for New Zealand. Aotearoa will be used except when referring to the government
and other entities that use the name New Zealand.
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language, and digital spaces as three areas of society which illustrate the reality of living in a
society and social spaces dominated and constructed by ableist assumptions.
Critical definitions: What is at stake in terminology
Ableism is the assertion that there is one “correct” way to exist as a person, creating a system
that values certain people and abilities over others. It disregards and misunderstands the
experience of anyone whose bodies are not “correct” (Hartblay, 2020:S32; Kattari, 2020:1171).
As one of my interlocutors explained, ableist attitudes are based on “not tak[ing] anyone
seriously”, a sentiment another interviewee compounds, stating that ableism is the framing of
being “differently abled” (the Other) as a deficit.
Disability is a complex term that is rooted in social, historical, and cultural contexts,
with deep ties to morality, personhood, citizenship, biopolitics, and issues of voice (Attrill &
Fullwood, 2016; Ellis et al., 2019; Ginsburg & Rapp, 2020; Hartblay, 2020; Inhorn & Wentzell,
2012; Kasnitz, 2020; Loh & Lim, 2019). Mental health is a fluctuating spectrum: rather than
merely being the absence of mental disorders (mental illness), it references an ideal state of
complete physical, mental, and social wellbeing that helps individuals cope with the normal
stresses of life and achieve their fullest potential (Rapoport, 1963:1900; McLean Hospital,
2021; World Health Organisation, 2018). Mental disorders, or mental illnesses, are
“condition[s] that affects a person’s thinking, feeling, mood, or behaviour”, whereas mental
health reflects “emotional, psychological, and social well-being [a]ffecting how we think, feel,
and act” (McLean Hospital, 2021). The dichotomy between mental health and mental illness is
further developed in Chapter Two with the aid of Hermaphroditus, a 16-year-old Pākehā non-
binary person high school student in Auckland that has experienced mental illness. Social
determinants are social, psychological, and biological factors that influence physical and
mental health outcomes at any point in time (World Health Organization, 2018). They include
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poverty, unemployment, social isolation, and inequalities in status (age, gender, ethnicity,
sexual identity), power, and control (Aneshensel et al., 2013; Dashiff et al., 2009; Groce, 2004;
McGorry et al., 2007; Mulvany, 2000; Rose, 2018; Webb et al., 2008; Zaffar, 2021; Zito et al.,
2001). Rapid social change, stressful work conditions, discrimination, and social exclusion are
also associated with poor mental health (World Health Organization, 2018). These factors
influence overall mental health and wellbeing as well as the development and severity of
mental illnesses. Understanding the above terms and why, when, and how they are used is
critical in examining the ever-growing activist content in digital spaces.
Methodology
I used a qualitative approach in this research, conducting semi-structured one-on-one
interviews and online observational research. My research was approved by the University of
Auckland Human Ethics Committee (UAHEC) at the end of May 2021, after an initial
submission in February. Once I had approval, I identified and contacted various disabilities
and mental health groups on Facebook (I approached 27 groups, of which 8 agreed to
participate, 3 declined, and 16 did not respond) and Reddit (I approached 17 subreddits, of
which 7 agreed, 2 declined, and 8 did not respond). The process of joining these groups and
contacting the admins/moderators was quite different between Facebook and Reddit. On
Facebook these groups are “private”, which meant that I had to be accepted into the group by
an administrator in order to contribute and view the content. Without such access, I could only
see the group’s name, cover photo, rules, and description. When requesting to join a private
group on Facebook a series of screening questions typically appears, the answers to which are
forwarded to the admins. Private groups often used variations of the same questions: why do
you want to join the group? have you read the rules? what is the answer to this question (the
answer being in the rules)? and for country-specific groups, confirming you live in that country.
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In addition to completing screening processes, I directly contacted group admins and
moderators to request their explicit permission to be in the group as a researcher. I introduced
myself as a University of Auckland master’s student in the Anthropology Department, and
where applicable a member of the disabled community, before outlining my research project
and requesting permission to conduct observational research and advertise for interview
participants within the group. I sent them admin/moderator-specific Participant Information
Sheets (PIS) that outlined the project and what I was asking for in detail to ensure they
understood. On Reddit the process worked slightly differently. There are no screening
questions when joining a subreddit. Instead, a welcome message is sent linking the user with
the subreddit moderators. I used this link to contact them under the “Research” inquiry option,
sending them the same introductory information and PIS document.
Once I gained permission in any group, I started by submitting a post announcing my
presence in the group as a researcher, providing a basic outline of my project, and advertising
for potential research participants, asking interested individuals to direct message (DM) me. In
this post I also explained that anyone who did not wish to be included in the observational
research could DM me, email me, or comment on the post; in these cases I noted their screen
names down in a password-protected Excel spreadsheet and did not look at or use any of the
content they had posted. I then posted around once every few weeks asking for interview
respondents in the first few months of the research when I did not have many respondents. I
also encouraged members to share my post with anyone they thought would be interested.
Finally, I posted on my personal Instagram, Facebook, and Tumblr accounts using keyword
tags to spread the post and again encouraged those seeing it to share it around.
I began conducting observational research in June 2021 once I had been approved to
interact in these various groups. Using keyword searches I also conducted observational
research on Tumblr, Twitter, Instagram, and YouTube as well as accessing archival data. In
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the groups I would scroll through the posts for the week, making general notes on the themes
and topics discussed and noting whether topics crossed groups and social-media platforms. If
a specific post caught my attention, I saved it and messaged the author seeking their permission
to use it as well as checking whether they met the research criteria of living in Aotearoa and
being aged 16–24. I spent approximately five hours a week for 20 weeks (a total of
approximately 100 hours) in these groups collecting observational materials between June and
the beginning of October, when I concluded my observational studies. On every social media
service and group in which I posted and conducted observational study I used my personal
accounts so that people could see my “social media history”, hopefully ensuring that our
interactions began with a sense of trust and that admins and moderators would be more trusting
of my accounts. This also meant that I received notifications of my phone and computer when
people in these groups posted. This would often prompt instances of engagement in clearing
the notification and then scrolling through to see what had been added since I was last active.
I interviewed 15 respondents recruited from these Reddit and Facebook groups and
Instagram, some being in the Reddit and Facebook groups I posted in and some linked to my
posts by others in these groups. When I was contacted by potential participants I would ask
them three screening questions: “Do you live in Aotearoa? Are you between the ages of 16 and
24? Do you talk about mental health or disability online?” If they met all these criteria, I sent
them the PIS and consent form to look over and sign. All interview respondents were offered
the option for in-person interviews (if they were in Auckland and it was safe and legal to do
so), phone call, video call, or text interviews. This variety of interview options was to ensure
that anyone could participate regardless of any disabilities they may have, their level of comfort
in talking to a researcher and stranger from the internet, and their level of access to resources,
such as a stable and sustainable internet connection. Interviews were recorded either on a phone
recording app (for in-person interviews in Auckland) or using embedded recording software,
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such as that available on Zoom (for those conducted online after August 2021, when Auckland
went into lockdown). Two interviews were also conducted via WhatsApp messaging, which
generates transcripts of the text conversation. Interview sessions lasted between 30 and 80
minutes, with breaks being offered as needed because of the potential for emotional and mental
fatigue. All my interview participants were either New Zealand citizens or permanent residents
and between the ages of 16 and 24, with 21 being the median age. They offered diverse gender
identities, with nine identifying as cis women, two as cis men, one as non-binary, one as trans-
feminine/non-binary feminine, one as feminine gender fluid, and one as cis female questioning.
While the lack of equal diverse gender representation may be a limiting factor in this research,
I suggest the gender ratio is instead reflective of the gender ratios within these online groups,
at least on Facebook, where I was able to look at the members and see their gender identity on
their profiles. When asked for their ethnicities seven identified as New Zealand European
(Pākehā), five as both Māori and Pākehā, one as Indian/New Zealander, one as Filipino/New
Zealander, and one as Ukrainian/Pākehā. Respondents were spread out over the country with
twelve in the North Island and three in the South Island. Auckland and Wellington were the
only regions with multiple respondents, with nine in the greater Auckland region and two from
the Wellington region.
For historical materials I used Papers Past, an archive of written and visual records from
Aotearoa and the Pacific, offered by Archives New Zealand, and the National Library, which
provides a brief description of materials and require materials to be requested with explanation
of who you are, why you need the resources, and what you plan to use them for. All this material
is considered archival data which dates to the signing of the Treaty of Waitangi on September
6, 1840; demonstrating the eradication of Māori perspectives and histories through the
implication that there was no recorded history in Aoteroa before September 6, 1840.
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Research in the time of Covid-19
The Covid-19 pandemic influenced this research in myriad ways, one of which was creating
limitations in terms how it could be conducted. The first instance of Covid-19’s impact was
the elimination of many potential participants who were tired out by the trials, tribulations, and
emotional burnout experienced during the pandemic. For instance, on August 17,2 just hours
before the nationwide level-4 lockdown was announced, I received this email:
I saw your advertisement regarding disabled people in New Zealand online and
have forwarded it to my flatmate (who is also disabled). We’re both disabled –
and research technicians – ourselves, and would be more than happy to help out.
After corresponding back and forth for 20 minutes, which concluded with my sending through
the PIS and consent forms, I did not receive further communication until after I followed up
with them twice, first on September 2 and then again on the 28th, expressing concern about
their wellbeing. When I asked if they were okay and if there was anything I could do to help
them, they responded:
Not really. I’ve had a whole bunch of bad occurrences happen all at once, and
I’m struggling to keep my head above water. […] Unfortunately, there’s not a
lot that can be done. Serious injury + immigration + flight/border issues + exams
+ surgery + inspection, all compounding in the same period. And then I found
out my parents opted out of most childhood vaccinations. I’ll be fine. I’m just
immensely stressed out right now.
This potential participant’s flatmate also never got in contact with me, I suspect because of
their own troubles and lack of capacity to participate in a research project. In this situation I
was more concerned for their wellbeing than having them participate in my research.
Another example of burnout affecting participation in my research occurred in the
online groups. While some groups, such as the meme groups, flourished, disability and
2 I received consent to use this email exchange.
13
mental health–specific groups and discussions saw a significant decline. Unlike in 2020,
when people used groups as a means of checking in with one another, it seems that many no
longer had the emotional capacity to engage during the unexpected and longer August
lockdown, which in Auckland stretched until December 2021. These behaviours are an
instance of what I have termed “long social Covid”, a shared social consciousness of cultural
experiences, mental health, and navigations of social space influenced by the effects of
Covid-19. The kinds and frequency of use of digital technologies change contextually
according to users’ needs. As Martí et al. (2017:192) state, social support is
multidimensional. The balance of online and offline mediums of support differs for each
person. Some people increase their use of digital technologies as their competency increases
because they feel more comfortable, while others decide that it is not where they want to
direct their limited energies. This may seem counterintuitive to what public health workers
and policy – which is increasingly emphasising online care – seem to assume.
Literature review
Historical background
Anthropological studies of digital technologies, youth, disability, and mental health all began
in the second half of the 20th century raging from the early 1960s to the 1990s (Aouragh, 2018;
Brake, 1985; Budka, 2011; Keniston, 1970; Moore, 1990; Schwartz & Merten, 1967). The
anthropological approach to mental health and youth are the oldest of the four sub-fields, both
gaining traction in the 1960s. Anthropological notions of the nexus between culture, mental
health, and mental illness gained notoriety in the early 1960s with the views of community
care, cultural stigmas, and holistic approaches to mental health found in Margaret Mead’s
“Mental Health and the Wider World” (1962) and Robert Rapoport’s “Social Anthropology
and Mental Health” (1963). The youth studies rose in popularity in the late 1960s and early
14
1970s with the establishment of journals dedicated to this area, Youth & Society in 1969 and
Journal of Youth and Adolescence in 1972. In the 1990s youth studies developed into an
independent field of study, as demonstrated by the creation of the Journal of Youth Studies in
1998. Anthropological interest in disability began with the burst of interest in disability studies
in the mid-1980s, when Louise Duval published the newsletter Disability and Culture in 1986–
1988 (Kasnitz & Shuttleworth, 2001). While the portfolio of publications in the anthropology
of disability gained momentum in the late 1990s and early 2000s, Kasnitz and Shuttleworth
(2001) criticised the discipline for its sub-par embracing of the key messages of disability
studies:
Anthropologists have the capacity to move disability theory forward, feeding it
with ethnographic fuel. While the anthropology of disability uses insightful
ethnographic methods to understand specific impairments in specific contexts,
often from a western or indigenous medical diagnostic perspective, this approach
often fails to deploy a dynamic relational concept of disability. (Kasnitz &
Shuttleworth, 2000:S18)
I infer that this “dynamic relational” conception of disability relates to the holistic cultural
approach that Mead and Rapoport were advocating for as well as being an early nod to the
newer concept of social determinants. The holistic approach views the person as a whole,
examining how the spiritual, the physical, the mental, and the social influence one another and
how they are interconnected.
Recent developments
The beginning of the 21st century saw many shifts in how academics and the general public
think and talk about the topics of mental health, youth, disability, and digital technologies.
Many academic discussions of mental health in 2021 continue to revolve around the same
points they did in the early 2000s (Aneshensel et al., 2013; Dashiff et al., 2009; Groce, 2004;
15
Kattari, 2020; McGorry, 2007; McGorry et al., 2013; Mulvany, 2000; Rose, 2018; Zaffar,
2021). The key points I am taking from the literature are that mental illness is to be classified
as a disability to reflect the role of social determinants in constructing the environment in which
mental health declines and mental illness develops, and the significance of stigmatisation and
social branding – the negative labelling of those with mental illness – in contributing to further
declines in mental wellbeing (Aneshensel et al., 2013; Dashiff et al., 2009; Groce, 2004;
Kattari, 2020; McGorry et al., 2007, 2013; Mulvany, 2000; Rose, 2018; Webb et al., 2008;
Zaffar, 2021; Zito et al., 2001). I employ these concepts through examining the cultural
perception of mental illness in Aotearoa, with particular focus on how men with mental illness
are viewed and branded in society.
Disability is a historically and culturally shaped political object. Chapter One
demonstrates the shift in social sciences away from a biomedical model – the medicalisation
of illness and framing of impaired individuals as the “problem” (Aneshensel et al., 2013) – to
a social/political-relational model of disability which focuses on the how society is politically
constructed to limit the engagement of those with impairments (Aneshensel et al., 2013; Groce,
2004; Kattari, 2020; McGorry et al., 2007; Mulvany, 2000). The shift in models align with
changes in social opinion in terms of how individuals with disabilities are seen. Like disability
and feminist scholars, mental illness scholars advocate for the voices and needs of individuals
with mental illness to take precedence over those of experts and professionals (Aneshensel et
al., 2013; Kattari, 2020; McGorry et al., 2013; Mulvany, 2000). Additionally, scholars in these
fields emphasise that the lived reality of mental illness is different for every individual because
it is informed by their embodied realities which are biographically, temporally, and culturally
specific (Aneshensel et al., 2013; Groce, 2004; Kattari, 2020; Mulvany, 2000; Rose, 2018).
These realities are entrenched within the cultural norms of a society. Mental illness is not
dependent on social determinants to develop; however, it is severely worsened by them because
16
individuals impacted by social determinants lack disposable resources (income, time, travel
capacities, and so on) needed to “treat” them. The system of social determinants is explained
by the notion “cycle of deprivation”, or the “poverty trap” (Oxford Reference, 2022). It is the
system of self-reinforcing mechanisms which perpetuates poverty and other forms of socio-
economic disadvantage across generations, which increases the likelihood of mental illness and
poorer mental health continuing intergenerationally because they do not have the capital to
move beyond the sociocultural and economic factors affecting mental wellbeing (Rose, 2018;
Oxford Reference, 2022). Intergenerational social deprivation creates a persistence of social
ideas, standards, stigmas, and problems born of poor housing, low education, unemployment,
and so on (Rose, 2018; Oxford Reference, 2022). The cycle of deprivation supports Mulvany’s
argument that mental illness should be considered a disability – defined as the disadvantage or
restriction of activity caused by a social organisation that excludes people with mental or
physical impairments from mainstream social activities (Mulvany, 2000:584). Because
disability is a socially constructed idea, grounded in dominant social stigmas and perceived
limitations of impairments (Mulvany, 2000) – the difference in a person’s bodily or mental
structure or function (CDC, 2020) – the day-to-day life (lived reality) of a person with
impairments is often much different than able-bodied peoples imagining of their reality.
Therefore, mental illness can be classified as a bodily impairment and therefore a disability.
In applying disability theories and frameworks to analyses of mental illness, a complex
and multifaceted framework of social restriction, disadvantage, oppression, and stigma begins
to emerge, transcending the clinical medicalised views of disability and impairments. This shift
represents an acknowledgement of the stigmas towards mental illness created through
processes of social oppression, discrimination, and exclusion. The prominent fallacy of mental
health policy is the assumption that medical symptoms and problems are caused solely by an
illness, underplaying the impact of sociocultural influences (Mulvany, 2000:587; Zaffar,
17
2021). Such disregard of the sociocultural influences on the embodied experiences of mental
illness or impairment perpetuates cycles of deprivation. Stigmatisation of the mentally ill strips
individuals of their personhood and citizenship and reduces them from a whole person to a
tainted and discounted one (Aneshensel et al., 2013). It causes social isolation, discrimination,
and prejudice, creating environments where people feel they need to hide their mental illness;
preventing them from seeking help for fear of being “branded” mentally ill. For instance gender
expectations effect how people are seen and deal with mental illness, as will be explored in
Chapter Two (Aneshensel et al., 2013; Dashiff et al., 2009; Groce, 2004; Kattari, 2020;
McGorry et al., 2013; Mulvany, 2000; Webb et al., 2008). These social stigmas can manifest
as microaggressions, perpetuating inequalities and stereotypes of minority groups and mental
illness and adversely affecting mental health outcomes (Kattari, 2020), as can be seen in the
Kiwi phrase “man up” that is frequently addressed to men struggling with mental health issues.
These microaggressions are mostly targeted towards aspects of identity – age, sex, ethnicity,
religion, sexuality, disability, having a mental illness, etc. – which has negative effects on the
mental health outcomes for these populations (Kattari, 2020; Webb et al., 2008).
There have been several developments in disability studies in recent years. As
anthropologist and disability scholar Devva Kasnitz argues, “Disability is a concept that grows
as we think about it, forcing us to adjust our conversations in vocabulary and rhetoric
depending on which disability world we inhabit or address”, forcing disability to become a
political exercise (Kasnitz, 2020:S16). Ginsburg and Rapp (2020:S9) and Horst and Miller
(2020:104) refer as “disability worlds” to explain the lived realities of the disabled, which are
shaped by the intimate and broader contexts in which they evolve; the aim is to foster
understandings of what it means to be human. The social model of disability emphasises the
need to focus on the underlying social processes that create barriers, which in turn construct
disability by rendering physical and social environments inaccessible to those with
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impairments (Aneshensel et al., 2013; Attrill & Fullwood, 2016; Ellis et al., 2019; Hartblay,
2020; Kirsten et al., 2009; Raffety, 2018). The social model is also known as the “eco-systemic
anthropological perspective” (Kirsten et al., 2009:1); which considers the impacts of various
social factors, such as economic, urban planning, policy and so on, on people’s wellbeing and
embodied belonging in society (Aneshensel et al., 2013; Ellis et al., 2019; Kirsten et al., 2009;
Raffety, 2018). Anthropologist Erin Raffety (2018) argues that the social model of disability
seeks to interrogate social attitudes towards differences, highlighting the constructed nature of
the category of disability. The social model aims to demonstrate that disability is a socially
constructed category that institutionally excludes and prevents (or disables) individuals with
impairments from existing and participating in mainstream society (Aneshensel et al., 2013;
Ellis et al., 2019). Disability scholars Alison Kafer and Tanya Titchkosky developed the
“political-relational model”. This builds on the social model in that it reminds us that disability
is always a political category (Ellis et al., 2019:250). It moves beyond the inaccessibility of
society and the urban environment for those with impairments to engage with the ableist
policies and beliefs that perpetuate these inaccessible spaces. This model also acknowledges
that disability and ability are relational fluid states, based on the policies which construct
engagement with and in space (Ellis et al., 2019:250; Ginsburg & Rapp, 2020:S11–S12;
Hartblay, 2020:S33; Inhorn & Wentzell, 2012:112). Regardless of what the model is called,
there is a consensus that framing an individual’s impairment as the “problem” is unacceptable.
It is not an individual’s body that is the problem but rather social space and environments being
inhospitable, arduous, and unaccommodating to the point of disabling and preventing these
individuals from accessing them.
A critical development in disability studies has been the emergence of the concepts of
voice and voice poverty. Voice is understood as the right to expression and the agency to
represent oneself; voice poverty is the “inability of people to influence the decisions that affect
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their lives and the right to participate in that decision making” (Horst & Miller, 2020:225, 229).
Voice poverty does not affect everyone equally; those with intersecting marginalised identities
or less “attractive” or uncommon disabilities are at greater risk of facing instances of voice
poverty because they have multiple socially constructed barriers suppressing their voice
(Aneshensel et al., 2013; Ellis et al., 2019; Ginsburg & Rapp, 2020; Inhorn & Wentzell, 2012;
Kasnitz, 2020). This can be explained through Appadurai’s concept of the “gravest lacks” of
the poor, referencing to these individuals who do not possess the social and cultural capital or
resources that would give them a voice (Appadurai, 1990, 2004). The cycle of voice poverty is
extremely detrimental to disability care because it ignores what Hartblay (2020:S26) has
termed “disability expertise”, that is, the specialised knowledge that individuals with
disabilities have accrued through their lived experiences (Hartblay, 2020:S27). Such expertise
is critical because it encapsulates specific social and medical knowledges that are specific to
how disabilities affect individuals and how they should be cared for. However, voice poverty
reflects that these individuals are not granted agency in their own care. Rather, individuals are
perceived through a generalised medicalised lens which devalues their expert knowledge in
favour of ableist notions and expectations (Hartblay, 2020).
Youth studies did not begin to gain interdisciplinary notice until the late 1990s. Along
with the development of youth studies as a field of study on its own came debates over what
and who “youth” is. This is complex. As Andy Ruddock, a communications and media studies
specialist states, “the term youth is no longer seen as straightforwardly linked with the
condition of being young” (2013:11). Anthropologists explain that the ambiguity of who youth
are and what it means to be a youth occurs because they are culturally and contextually
dependent (Brake, 1985; Bucholtz, 2002; Durham, 2004; Hill, 2011; Keniston, 1970; D.
Moore, 1990; Nilan & Feixa, 2006; Rohrer, 2014; Schwartz & Merten, 1967). Thus, “to call
someone a youth is to position him or her in terms of a variety of social attributes, including
20
not only age but also independence – dependence, authority, rights, abilities, knowledge,
responsibilities and so on” (Durham, 2004:593). Anthropologists use the term “shifter” to
encapsulate what youth culture is. A shifter is something that points to cultural (contextual)
meaning but changes with each use, creating a context-renewing and context-creating
environment, for instance the use of “I” (Bucholtz, 2002:528; Durham, 2004:589, 592, 593;
Rohrer, 2014). Youth, as a term, is, therefore, flexible, agentive and contestable in the eyes of
these anthropologists, because in its role as a shifter, it “invokes youth as a political, or
pragmatic act” (Durham, 2004:592).
A common theme in youth studies literature is that of youth positioned as social
delinquents. This narrative of social deviance is perpetuated by the media, which produces and
reproduces public sentiments and concerns, demonstrating instances of the politics of
representation (Ruddock, 2013:2–3). Youth are framed as aloof delinquents who have become
“liabilities” to the socioeconomic order because they are often at the centre of sociocultural
change (Erikson, 1965:166), for instance the moralisation against youth during the UK punk
rock era in the 1970s. However, as youth studies has developed, the theme of youth
delinquency has been replaced by the view that youth are social actors and activists who shape
culture and society (Barber, 2013; Brake, 1985; Bucholtz, 2002; Décieux et al., 2019; Durham,
2004; Erikson, 1965; France, 2000; Griffin, 2001; Keniston, 1970; Nilan & Feixa, 2006;
Rohrer, 2014; Ruddock, 2013; Truzzi & Manning, 1972). These behaviours are referred to as
“youth consciousness” and are punctuated by “revolutionary movements” (Truzzi & Manning,
1972:26) and various forms of resistance that act to form a subculture of “youth”. The
positioning of youth in terms of a subculture – “meaning systems, modes of expression or
lifestyles developed by groups” (Brake, 1985:7) – allows for an evolution away from youths
as delinquents. The shift in understanding youth as social actors shaping society and culture
comes with the recognition that youth is not a developmental stage bridging the gap between
21
adolescence and adulthood but rather a subculture that can/might/may revolt against the
hegemonic norms of society. This shift in the understanding of youth and youth culture also
means that there is a turn away from rites of passage as an exclusive focus of youth’s
motivations (Erikson, 1965; Nilan & Feixa, 2006; Rohrer, 2014).
Recent youth studies have focused on postmodern approaches, such as post-subcultural
theory, that focus on the role of social media, the internet, and consumerism (Cieslik &
Simpson, 2013; Fu & Cook, 2021). In such approaches, globalisation is seen as playing a
critical role in “youth phases” and shifting conceptions of identity, such as extended timeframes
for the social transitions of marriage, homeownership, children, and steady jobs (Cieslik &
Simpson, 2013; Erpyleva, 2021; Fu & Cook, 2021; Henn & Foard, 2014; Kitanova, 2020). This
extension of social transitions, often involuntary, leads to greater instances of youth political
activism and unrest (Cieslik & Simpson, 2013; Erpyleva, 2021; Henn & Foard, 2014; Kitanova,
2020), again demonstrating that what mainstream media frames as youth delinquency and
social deviancy is activism (Bucholtz, 2002; Hill, 2011; Nilan & Feixa, 2006; Reis &
Berckmoes, 2018; Ruddock, 2013).
The current and past literature has done much to advance the studies of these areas and
continue to develop them under the care of the social model. However, there needs to be greater
intersection of these ideas and examination of their relationship to one another: this is where
the literature can grow. Society is changing and how we act socially is changing, and the
literature’s analysis needs to continue to advance to reflect these changes.
Chapter outline
Drawing upon the existing literature, I build my argument that digital communication and intra-
group support are vital to develop autonomy, voice, validation, and even activist activity for
disabled and mentally ill youth in Aotearoa, a society dominated by ableist assumptions.
22
Chapter One examines the historical background of disability and mental health activism in
Aotearoa. These hidden histories of disability, mental health, and voice poverty are exposed
and discussed in relation to this study. I frame history not as an event occurring in the past, but
rather as something that no longer has active social consequences. As such, I argue that because
of their hidden histories and the continued disability and mental health activism in New
Zealand, they are not history. Furthermore, I examine the hidden Māori perspectives on these
issues based on traditional oral histories as told through the narratives of Māui. These histories
are hidden by the ableist and colonial domination of public discourse and information,
preventing the expression of minority expert knowledges. These affect the records kept, the
information taught, and the way scholars approach these topics. I draw on historical documents
from the New Zealand National Archives and Papers Past, policy documents, acts, and
traditional Māori histories, as well as the works of historians, anthropologists, and sociologists,
to develop and examine these ideas in a historical and modern context.
Chapter Two discusses the politics of language, delving into the importance of the
language we choose to use and the sociocultural implications, particularly in English, of
choosing one word over another when there are several that can be used to express the same
thing. For instance, in place of the term disabled the terms handicapped, crippled, lame, or
differently abled can be used; each has specific temporal, historical and social implications.
This chapter contains foundational frameworks from which to view subsequent chapters and
examine the importance of language used when discussing the past, present, and future. Here
I demonstrate the power of language as a key component in cultural performance and social
practice, revealing embodied dispositions in Aotearoa’s habitus. I argue that a social model of
disability suggests that mental illness should be considered a disability because it is a
permanent impairment. I draw heavily on my interview and observational materials in this
23
chapter alongside government definitions and documents to illustrate how these topics are
framed and presented in Aotearoa society.
Chapter Three explores expressions of disabled and mentally ill youths’ voices on
social media. The complex duality of social media and its impacts on mental wellbeing is a
critical theme explored in this chapter. In this chapter I introduce the term “filtered lives” to
evoke the harmful elements and pressures of social media on youths’ mental health.
Furthermore, I examine the politics of web design and the exclusionary consequences of
inaccessible social media design elements because of dominant ableist assumptions when
coding websites. I primarily focus on what social media and digital participation offer to
disabled and mentally ill youth in terms of identity exploration, community, and information
sharing.
I further develop these discussions of digital technologies and social media from the
perspective of the impacts these technologies have had in the context of the 2020–2021 Covid-
19 pandemic in Aotearoa. I argue that the pandemic has demonstrated how society is
systemically constructed through policy and urban design to be unaccommodating for
individuals with disabilities. I argue that pseudo-nationalism (Sturm et al., 2021: 2020–22) was
a critical element of the New Zealand government’s Covid-19 response. Furthermore, it
fostered an environment of infantilisation towards and displacement of disabled individuals
because of the impermanent collectivism pseudo-nationalism creates.
Throughout this thesis, my focus is on listening to the voices of the forgotten and
shining a light on the people so often spoken about but seldom spoken to. While there is a
growing chorus of those wanting to “return to normal”, I argue that this pandemic has offered
us the perfect opportunity to reflect on our systems, biases, and perceptions in terms of so-
called “vulnerable” groups. It has brought the issues that disabled groups face to the forefront
24
and has caused able-bodied individuals to partially “live in their shoes” by experiencing the
everyday trials and tribulations of individuals with disabilities.
25
Chapter One: Hidden Histories
Disability and Mental Health Activism in Aotearoa
Most people are familiar with the utterance, “History is written by the victors.” The origin of
this phrase remains unknown, yet many have evoked it: for instance, Winston Churchill, in his
address to the House of Commons on June 8, 1940, said, “History will be kind to me, for I
intend to write it.” As this view implies, hegemonic histories miss critical pieces because they
are produced by and represent a singular group, their perspectives, and their voices (Trouillot,
2015). “Hidden histories” are the omissions and erasure of people and their experiences from
history, because of “histories” that are incomplete and one-sided. Hidden histories are the
histories of people who are not afforded the opportunities or positions to write accepted
histories – people who are the hidden, forgotten, overlooked, and deemed undesirable (Pacheco
de Oliveira, 2020; Driver, 2013; Rose, 2021; Tikao et al., 2009). In essence, these people and
their histories are silenced through the lies and oppression wrought by the dominant authority,
often leading to their accounts being destroyed, guarded, or hidden away (Pacheco de Oliveira,
2020:215; Driver, 2013:420; Hocking, 2020:217; Prasad, 2021; Rose, 1992:14; Tikao et al.,
2009).
Central to understanding hidden histories is understanding what history is. While this
seems simple – that it is the study of the past and past events – what does this mean? What is
the past? Historian Edward Carr’s What Is History? (1961) was one of the major works to
discuss this issue. Carr concluded that history is “a continuous process of interaction between
the historian and his [sic] facts, an unending dialogue between the present and the past” (Carr,
1961:16), making it a social and political process of interpretation. Rose (1992:16) builds on
this, claiming that control over the past – history – comes from the power to define the present.
This defining of the past and present is a means of controlling abused minorities who, when
26
they question the hidden histories of abuse, are accused of “living in the past” (Rose, 1992:16).
Rose argues that, these groups are not living in the past because these events continue to
permeate the present as they continue to be confronted by them in the form of arguments and
debates (Rose, 1992:16–17). I interpret Rose’s argument to mean that if events or the social
repercussions are active in the present it cannot be said “that is history”. Histories of oppression
cannot be regarded as history, simply because they are in the past, as they continue today in
the form of neo colonialism, structural racism and ableism in education, the justice and
systems. These are layers of historical and contemporary trauma which continue to perpetuate
harm against the Other. For instance, the Treaty of Waitangi or Te Tiriti o Waitangi (Aotearoa’s
founding document between the British Empire and Māori) was signed in 1840 and the dawn
raids (the forced entry into the homes of suspected illegal overstayers from the Pacific Islands
in the early hours of the morning) occurred from the mid-1970s to early 1980s, and yet there
is still hurt, debate, and social atonement occurring in 2021; despite these events being
considered history, they are still active and “current events”. These instances of history are
hybrids of past and present, because public discussions, policy reform, and activism related to
these events are still occurring.
The uncovering of new information can be transformative. History shifts and changes
with the revelation of transformative details; they are “corrective” (Hocking, 2020:212). They
are truths that can change understandings of the past, in turn affecting how something is
remembered and shared, and the relationship between the past and the present (Hocking,
2020:217; Rose, 1992:15). Stories are critical transmissions of history; they are open to
retelling, rethinking, and rewording, allowing them to shift and change as information is
uncovered (Rose, 1992:15). These details, and our willingness to accept that history is a
practice of interpretation that can be reformed, allow us to understand that events previously
thought to be over are still ongoing, with new chapters emerging as time goes on. I explore two
27
such events in the histories of mental health and disability activism in Aotearoa that have been
hidden from the public view (Driver, 2013:421, 423). I demonstrate how these are hidden
histories and why it is important that we pay attention to them, and how documents, or a lack
thereof, can reveal hidden histories and the general ‘whitewashing’ of history both in terms of
sterilising history and erasing traditional Māori perspectives of health (Pacheco de Oliveira,
2020; Hocking, 2020:217–19; Prasad, 2021; Tikao et al., 2009).
People in Aotearoa, like many other colonised nations, relied on oral histories before
European settlers came and have since had many of these oral histories lost, altered, or
dismissed as myths and fables by the colonial power (in this instance the British) (Tikao et al.,
2009:7). Such resemantisation (the total eclipse of original meanings) is an example of
“passive” structural censorship of histories and historical facts, creating a cycle of systematic
exclusion in constructing the Other (Pacheco de Oliveira, 2020:215; Prasad, 2021; Tikao et al.,
2009). An additional form of “passive” censorship that constitutes the construction of the Other
is through scholarly neglect (Trouillot, 2015). These are all elements that create a culture of
hidden histories that cannot be accounted for, erasing some citizens (Others) from view while
prioritising the so-called dominant groups and their experiences. This is not a new
phenomenon. To the point of this chapter, which is the erasure of disability and mental health
activism, it often takes someone having a personal stake or interest in a topic for the lack of
scholarship on it to be revealed, and to demonstrate the hurdles to accessing the resources
necessary for investigating these hidden histories and addressing these gaps in the literature.
For these reasons, I have had many interview respondents thanking me for doing this
research. When something is lacking or has been overlooked, there is a sense of gratitude that
comes with it being noticed, along with the anger over its neglect. They often noted that there
is nothing like it or that they do not feel represented by what there is and state the importance
of the research I am doing, particularly given how it is driven by a shared viewpoint. As I have
28
said above, often researchers are driven by their own interests; I am no exception. I am a
disabled individual who also lives with mental illness, but I have very rarely seen disability
and mental illness discussed together, particularly in academic settings. Similarly in
professional situations: when I am at the doctor’s, for example, unless I bring it up, they are
never discussed as elements that can affect one another. Furthermore, the voices of Aotearoa
disabled youth and youth that experience mental illness, and the histories of these groups, are
often overlooked or manipulated and changed when decisions are made that affect these
groups.
Disability activism in Aotearoa over the last 130 years
I define activism as “the activity of working to achieve political or social change” (Oxford
Learner’s Dictionaries, n.d.). What these activities are and what it means to be an activist or to
engage in activism has changed over time alongside shifting social expectations for the care
and treatment of those with disabilities and mental illnesses. This is evident in the content
obtained from the national newspaper archives, which reveal changes over time in how the
term “disability” was used. In my archival research I found a hybrid use of the term disability.
In the 19th and early 20th centuries, “disabled” largely used to refer to those that were
disadvantaged in some capacity, rather than relating to “a physical or mental condition that
means you cannot use a part of your body completely or easily, or that you cannot learn easily”
(Oxford Learner’s Dictionaries, n.d.) as we understand it today. For instance, the New Zealand
Mail (May 14, 1902, p.45) states, “[L]et disability of sex be withdrawn, as have those other
disabilities of colour, race, caste, and class”. These understandings of disability as both
physical and mental disadvantage or social disadvantage presents a challenge for interpreting
and understanding what we consider disability and advocacy when examining it from these
historical perspectives. However, I am able to infer that in the 19th century, during the period
29
of early colonisation, it was unthinkable to talk about disability in a non-negative light. This is
demonstrated in the numerous immigration policies implemented after the British Empire
claimed sovereignty that sought to keep disabled individuals out of the country, as will be
discussed later in this chapter.
Māori views of disability
Before missionaries and British colonisers arrived in Aotearoa, Māori histories pre-dating 1840
were shared orally and through art. Written records dating from 1840, when the Treaty of
Waitangi was signed, and for many years after were written by non-Māori individuals – often
British missionaries – whose understanding of te reo Māori (the Māori language) was usually
limited and often expressed the writer’s cultural biases. For instance, their interpretations of
what Māori said reflected their own knowledge and biases, which in turn influences what is
said, seen, and interpreted by Māori (Tikao et al., 2009). A perfect example of this is the
conflicting understandings between the English and Māori versions of the Treaty of Waitangi.
A major misunderstanding is that the English text stated that Māori gave the Queen all rights
and powers of sovereignty over the land, whereas in the Māori text, Māori gave the Queen te
kawanatanga katoa (complete government over the land with Māori retaining the rights and
powers of ownership). These mistranslations were compounded by Māori not having a written
language pre-colonisation. Social perspectives, particularly of disabled individuals, in these
oral histories are remarkably distinct from those of more modern written histories. In these
older oral histories, individuals with impairments were considered ‘gifted’ with god-like power
and status. Their differences and talents were praised rather than marked as deficiencies, as
was the custom in British society (Tikao et al., 2009:7). For instance, Murirangawhenua, also
known as Matakerepō (cloudy vision), was the blind grandparent of Māui, a well-known hero
and trickster in Polynesian history. In the well-known story of how the North Island of
30
Aotearoa was created, Murirangawhenua gifted her jawbone to Māui, with which he created a
fishhook, which he used to fish up the North Island. Māui used karakia (prayer) and smeared
blood from his nose on the jawbone to catch the whenua (land). This tale demonstrates the high
esteem in which Murirangawhenua was held for their knowledge and wisdom, qualities that
resided in the jawbone and allowed Māui to know what he needed to do to be successful (Tikao
et al., 2009:5). There are other early oral histories which depict impaired figures as powerful,
such as another relative of Māui, Mahuika, the goddess and guardian of fire, who is described
and depicted as having no eyes (Tikao et al., 2009:5–6). These are only two examples in early
Māori history which depict impaired individuals – particularly female elders who were elevated
in society - as powerful and capable figures, “acknowledged by te iwi Māori [Māori
tribes/nations] as gifted people with talents to share with their hapū [kinship group]” (Tikao et
al., 2009:12).
However, as time went on, these stories began to change. Instead of celebrating those
with impairments, they began to be viewed as being “cursed” and as an infringement of tapu
(that which is set apart or forbidden) rather than valuable members of society (Tikao et al.,
2009:8). As these histories cannot be dated, there can never be exact certainty that the
colonisation of Māori and Aotearoa was the cause of this shift. However, given the perspectives
of English society at the time, and even now, it is not far-fetched to claim that English (i.e.,
Western) perspectives and influence were a least a factor in this shift (Pacheco de Oliveira,
2020; Prasad, 2021; Tikao et al., 2009). Furthermore, this shift in how people were thought of
and treated demonstrates the violence of “passive” structural censorship and information
distribution in the form of ableism and colonialism.
31
Historical disability activism
So how does the history of Aotearoa activism fit into this socio-political narrative? Here I
include the history of disabled policy and acts to show how disabled individuals in Aotearoa
were viewed during the first 100 or so years of our “documented” history. For instance, the
Imbecile Passengers Act of 1882 sought to deny entry into the country to those that would
challenge the ideals of the “new society” and be a “burden” on that society, identified as
“cripples, idiots, infirm, blind, deaf and dumb” (Stace & Sullivan, 2020:2). These social
restrictions on immigration represented the views of society at large, and in 1899 the new
Immigration Restriction Act was brought into legislation. This Act banned the “idiotic”, the
“insane”, and the “contagious” from immigrating (Stace & Sullivan, 2020:2) – expanding the
notion of social “undesirables” from just the disabled to include the mentally ill as well. I will
be exploring the historical view of mental health and illness in Aotearoa and activism in this
area further on in this chapter; for now, it is important to note that these policies were likely
influenced by the popularisation of social Darwinism in the 1870s, a social interpretation of
Darwin’s theory of biological natural selection, published in 1859 (Stace & Sullivan, 2020:5).
These ideas saw a resurgence in the early 20th century with the introduction of eugenicist
policies in Aotearoa. The eugenics movement aimed to sterilise all individuals deemed “unfit”
to breed (Harvie, 2018). This movement targeted the disabled, mentally ill, and Chinese.
Sterilisation of the “unfit” was first introduced into the historical archive in 1903 but came
prominently into public view in 1928 and 1929 when the government was debating it as a
“moral issue” and considering implementing it into law (Ashburton Guardian November 18,
1929, P. 5; Harvie, 2018). The Mental Defectives Amendment Act of 1928 sought to
implement these views of the “socially defective” as “unfit” by adding in several clauses that
would strip them of their agency and human status. The most notable of these clauses were 11,
which created a eugenics board; clause 15, which established a register of mentally defective
32
children; clause 21, which prohibited the marriage of people on the register; and clause 25,
which authorised unconsented sterilisation (Harvie, 2018). While clauses 21 and 25 were
withdrawn before the Act was passed, there were several instances of people being forcibly
sterilised in the 1920s and 1930s, and likely many more, though this cannot be proven due to
the special permission required to access the relevant files in the New Zealand Archives on
“privacy grounds” (Harvie, 2018) – a situation that further compounds the sense of these
histories as hidden (Hocking, 2020).
These acts demonstrate that disabled individuals were viewed by the law as burdens to
society, worthless people to be kept out, excluded, and locked away – as will be discussed later
in this chapter. However, while these were the prevailing views at the time, they were not the
only views. There were many people who spoke out against these perceptions of disabled
individuals and who advocated on their behalf. In an example from the Ashburton Guardian
(November 18, 1929, p. 5), the author cites criticism towards the forced sterilisation of disabled
individuals, stating, “If you are going to sterilise mental deficients, why not criminals,
drunkards and political apostates”, and pointing out that the likelihood of inheritability is low
and that children save women from “insanity” – that is, hysteria. Simply putting this in writing
was a form of advocacy. This article advocates for disability rights through the implication that
the sterilisation of “mental deficients” was injudicious. Pointing out these issues is the first step
towards social change. Social recognition of these issues is the catalyst for “change” – or at
least an illusion of social change, as is evident in the historical repetition of social prejudice
that will be explored later in this chapter.
There are two interesting instances of disability being “accepted” – or, at least,
receiving advocacy for fair treatment. The first, like in the Māori historical tales mentioned
above, relates to blindness/visual impairment. In colonial Aotearoa blindness seems to be one
disability that did not necessarily imply ‘undesirability’ and a need to lock a person away. In
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1887 a blind teacher, Mr Tighe, came to the country from Australia to teach blind children and
give them a chance at a “normal” life, which I infer to mean unincumbered participation in
society and the workforce. In 1890 the Jubilee Institute, later known as the Blind Foundation,
was created, funded by the Association of the Friends of the Blind established a year prior in
1889 (New Zealand Herald, February 15, 1887, p. 5; Lyttelton Times, July 10, 1890, p. 6), with
the purpose of proving blind individuals as having an “elementary knowledge” that would
allow them to “earn their living” (Lyttelton Times, July 10, 1890, p. 6). Its creation was the
outcome of activism: without vying and advocating for funding these kinds of programs do not
exist, even in 2021. Another example of vision impairment being privileged over other
disabilities occurred when a worker lost his sight in 1915 because of an incident at work. The
worker went to court seeking compensation for lost wages and the new burdens of living with
decreased sight; he won, setting a new precedent for workers’ rights and the accountability and
care of disabled citizens (Maoriland Worker, April 14, 1915, p. 8).
The second instance of positive association of disability was when it is attached to war
efforts and returning soldiers; as (Schorer, 2012:156) states, “the [First World] war had created
a new class of disabled people”. In the early to mid-20th century, a large majority of the articles
that I could locate in Papers Past, Archives New Zealand, and the National Library centred on
activism for the care of disabled soldiers. While this could be attributed, in part, to the moral
discourses of sacrifice and obligation, I argue it is also because of the undesirability of
individuals with disabilities. The newspaper evidence indicates that surges of disability
activism occurred after the First World War and saw a resurgence towards the end of the
Second World War. In 1918 there were protests throughout the country led by war widows and
families aiming to obtain greater financial support for injured or permanently disabled soldiers
and their families, many protestors claiming that the default soldiers’ pensions were
insufficient to cover the costs of medical treatments, loss of wages, and ability to work. There
34
were both those that supported the protests, claiming it was the government’s responsibility to
care for their citizens, and those that condemned them, claiming that the care of these
individuals, beyond what was promised upon enlistment, is not the problem of the government
(Poverty Bay Herald, August 5, 1918, p. 5). While these protests and campaigns made waves
to change how disabled veterans were viewed and treated in society by 1924, this was also
around the height of the eugenics movement in Aotearoa society (Fleming, 1981). The
influence of the eugenics movement meant that disabled civilians and soldiers were viewed
under different lights: while disabled veterans received compensation and support from the
government, disabled civilians – particularly those with genetic disabilities – received no such
support, and if they did they had to “prove” their disability and its origins (Auckland Star,
February 23, 1924, p. 5; Ashburton Guardian, November 18, 1929, p. 4). Disabled citizens
began to argue that they also deserve to receive support and should not have to “prove” their
disabilities to receive assistance, because these standards end up preventing assistance
(Auckland Star, February 23, 1924, p. 5), something that is still very relevant today. While
some progress had been made in terms of disability care for soldiers, it was still lacking,
prompting petitions requesting implementation of a system which would provide wage
compensation for soldiers disabled because of the war (Hawera Star, July 28, 1927, p. 5). The
type of system these activists were calling for is comparable to the ACC system Aotearoa has
in place today in the 21st century, which provides 80 percent of the wages earned prior to
injury/permanent disability. Protests and petitions continued throughout the 1930s and 1940s
by workers and veterans alike fighting for their rights to care and an equal place in society and
to not be thrown aside or hidden away (Timaru Herald, February 18, 1930, p. 7; Auckland Star,
September 3, 1931, p. 3; August 27, 1945, p. 6; Star (Christchurch), May 24, 1932, p. 10;
Northern Advocate, November 30, 1932, p. 5; October 31, 1944, p. 4; March 3, 1945, p. 6;
Stratford Evening Post, November 30, 1933, p. 6; Evening Post, December 20, 1943, p. 6;
35
Manawatu Standard, November 2, 1944, p. 4). As the Second World War raged, the eugenics
movement lost credibility due to the Nazis’ zealous and extreme application of eugenics. The
language referring to disabled individuals moved away from references to “defectives” who
were “unfit to breed” (Tolerton, 2011), but this did not lead to a change in their treatment as
second-class citizens in Aotearoa. Disabled veterans challenged the ideals of eugenics and the
movement’s notions of the disabled. Through the activism that grew out of disabled soldiers’
mistreatment in inequality came the blueprint for how disability activism occurs today in
Aotearoa. Associations are created, protests and marches are organised, petitions are filed to
the government, and most importantly, we make noise. And sometimes these moves are
effective. From the 1960s onwards, the rise of global disability rights movements caused a
shift, leading to several acts being implemented in Aotearoa that sought to provide equal
treatment for disabled individuals. These included the Disabled Persons Employment
Promotion Act of 1960, which sought to advocate for employment opportunities for disabled
individuals; the Disabled Persons Community Welfare Act of 1975, seeking community
support for impairments not caused by accidents; and the Education Act of 1989, legalising the
right for disabled children to attend the same local school as non-disabled children. It is evident
that from the 1930s there was a desire for and willingness to socialise and integrate disabled
people into the broader community (Burt, 2013:28). These shifts in social perceptions began
as people became more willing to engage in self-advocacy, refusing to be patronised (Schorer,
2012:155).
Disability activism today
In 2021 there is an ongoing role and need for protests, marches, petitions, and campaigns for
disability rights. The beginning of the 21st century, propelled by the legislative changes
mentioned above, saw a re-examination of how disability was engaged with and viewed in
36
Aotearoa. Many dedicated disability sectors have been established. In 2000–2001 the New
Zealand government developed its New Zealand Disability Strategy based on the social model
of disability. This model states that an individual with an impairment is disabled by the barriers
created by their physical and social environments (Aneshensel et al., 2013; Attrill & Fullwood,
2016:3; Ellis et al., 2019:113; Hartblay, 2020:S26; Kirsten et al., 2009:4; Raffety, 2018). The
World Health Organization also adheres to the social model of disability, defining disability as
arising from an interaction between health conditions and contextual factors – the difficulties
encountered in reference to impairments, activity limitations, or participation restrictions (areas
of functioning) (World Health Organization, 2011). In 2002 the Office for Disability Issues
was established. In 2006 the New Zealand Sign Language Act was passed, making it an official
language of Aotearoa. In 2007 Aotearoa signed the United Nations Convention of the Rights
of Persons with Disabilities, ratifying it in 2008, meaning all legislation must adhere to the
guidelines of the Convention (Office for Disability Issues, 2016). As this demonstrates, in the
first decade of the 21st century, Aotearoa made significant strides toward incorporating disabled
individuals as fully fledged members of society. More recent developments include calls for
the appointment of a minister for disabled Pasifika groups in 2020 (Hopgood, 2020) and the
creation of a new Ministry for Disabled People in 2021 (New Zealand Government, 2021).
Through creating these dedicated spaces and services for disabled individuals, the government
is acknowledging that the current systems are failing our disabled citizens. This
acknowledgement demonstrates the leaps and bounds in Aotearoa spurred by disability
activism.
Despite this progress, there are still instances, even within the last two years, where
disabled individuals have not been provided with sufficient care or held in the same regard as
their able-bodied counterparts. A prime example is disabled individuals’ inability to access the
workforce and exclusion from it (Carroll, 2021). There is a common conception that disabled
37
individuals are “lazy” – as one of my participants, Hera, a 21-year-old Pākehā/Māori woman,
stated – and require too many accommodations to make hiring them “worth it” for employers,
particularly during the pandemic (Hall, 2021; Trigger, 2021). Gray, a respondent in Carroll’s
2021 article, elaborated that there are biases attributed to the word disability in the workforce
that create “roadblocks” for disabled jobseekers. These biases lead disabled jobseekers to
consider whether they should disclose their disabilities during the hiring process or not. Evie,
a straight-A student quoted in Trigger’s (2021) article, stated that she requires understanding
for her learning disability because some things may take her longer to pick up, and that not
disclosing the disability could be problematic down the road. My respondent Cyra similarly
stated, “Thinking about jobs and thinking about the future and do I disclose that I have ADHD?
Will that afford me accommodations, or will I not be hired? It’s terrifying.” Cyra’s fear is not
misplaced. Disabled job seekers have always been overlooked and treated worse than their
able-bodied counterparts, as is exemplified in Pulman’s 2020 article about a disabled woman
being told that “[t]he only way [she] will get a job is if someone feels bad for [her]”. These are
not merely modern problems and concerns. In 1919 a Royal Proclamation was made requesting
employers to employ disabled soldiers because over 400,000 disabled men were unable to find
work post-war because of their disabilities (Auckland Star, 15 Sep. 1919, p. 5). One of the
goals of the new Ministry for Disabled People is to open the workforce and create equal
opportunities for individuals with disabilities (New Zealand Government, 2021). As we can
see, social issues of access that have plagued the disabled in the past continue to be a problem
in the present because society continues to be dominated by ableism and ableist assumptions.
That people with disabilities experience of lower social status is further demonstrated
through discriminative ableist assumptions in Aotearoa’s immigration policy. In 2020 the
Equal Justice Project ran an article about the discriminatory immigration laws that prevent
disabled individuals from entering Aotearoa. The language used in the 2009 Immigration Act,
38
that “immigration matters inherently involve different treatment on the basis of personal
characteristics”, echo the sentiments expressed in the 1899 Immigration Restriction Act and
the 1882 Imbecile Passengers Act – that those that do not fit the norms and are seen as a
potential burden on society are not welcome in Aotearoa. Disabled individuals continue to be
denied immigration and residency at an alarming rate in 2021, with the government “justifying”
these individuals’ exclusion by claiming they were not of “an acceptable health standard”
(Clent, 2021; Hall, 2021; Loren, 2021; Nadkarni, 2021; Tan, 2021; Truebridge, 2018) – further
exemplifying that these issues of inequality have not been resolved, continuing to seep into the
present because of the prevailing ableist assumptions. Section A4.15 of the Immigration New
Zealand Operational Manual for 2008–2010 outlines “acceptable standard of health” as
i. unlikely to be a danger to public health; and
ii. unlikely to impose significant costs or demands on New Zealand’s health
services during their period of intended stay in New Zealand; and
iii. (if they are under 21 years of age and are applying for a student visa or permit)
unlikely to qualify for Ongoing and Reviewable Resourcing Schemes (ORRS)
funding during their period of intended stay in New Zealand. (Immigration New
Zealand, 2008)
An updated definition of “acceptable standard of health”, or “good health”, as it is now termed,
can be found on the Immigration New Zealand website:
– unlikely to be a danger to the health of the people already in New Zealand
– unlikely to cost New Zealand’s health or special education services a
lot of money
– able to work or study if this the reason for your visa. (Immigration New
Zealand, 2021)
The perception that disabled individuals will be a burden on society and a drain on resources
is the root cause for the restrictions put on the ability for disabled individuals to immigrate
39
(Equal Justice Project, 2020; Hall, 2021; Loren, 2021; Tan, 2021). While the government has
obligations to its citizens to ensure that state-funded essential services, such as healthcare and
education, do not exceed excessive costs and demands, through barring entry into the country
or access to citizenship based on disability and the potential need for care, it is breaching the
1990 New Zealand Bill of Rights Act as well as the UN Convention on the Rights of Persons
with Disabilities, which it has ratified (Equal Justice Project, 2020). By continuing to view
disabled individuals as “vulnerable” and in need of constant care – to the point of becoming
“burdens on society” – the government is setting the tone for how Aotearoa society views,
thinks of, and treats disabled individuals. Rather than framing our engagement with disabled
individuals as being about what they can add to society, they are positioned within a deficit
framework that asks what they will cost (take away from) society. This ideology is dangerous
as it flirts with the ideals of eugenics that informed and were prevalent in the passing of the
1899 Immigration Restriction Act and the 1882 Imbecile Passengers Act – again demonstrating
that these events have not been concluded and that we have not made as much social, legal, or
political progress as was previously thought.
Mental health activism in Aotearoa over the past 130 years
Māori views of mental health
From the archival research I conducted, it was extremely difficult to find conclusive evidence
of historical Māori perspectives on mental health. Unlike disability, I was unable to locate any
histories that exist today in the form of “myths and legends” that depict instances of mental
health or how it was conceptualised within Māori communities – at least not overtly. There are
two ways to interpret this lack of documentation: that mental health was not an issue for Māori
before colonisation occurred, or that the way it was expressed and understood was different to
modern notions of mental health and has thus been overlooked. For instance, Taitimu et al.
40
(2018:154–55) state that colonisation disrupted both Māori understandings of mental health
and how they experience it culturally. As both the literature and my respondent Hermione, a
23-year-old gender-fluid Pākehā/Māori person, states, traditional Māori understandings of
health were “holistic, with principles of unity, harmony and balance as central to health,
culture, kinship and protocols” (Doyle, 2011:21; also see Boulton, 2005; Durie, 1985, 1997;
Kopua et al., 2020; Taitimu et al., 2018). Health in Māori culture is often viewed through the
image of Te Whare Tapa Whā, a house with four walls representing life’s four basic
dimensions: te taha wairua (spiritual), te taha hinengaro (psychic), te taha tinana (bodily), and
te taha whānau (family) (Taitimu et al., 2018:159; also see Boulton, 2005; Doyle, 2011; Durie,
1985, 1997). It is the combination of these four components that dictate health and wellbeing
as they represent land, culture, and language, which connect Māori to their ancestors and
ancestral history and values, as can be seen through the telling of their histories in the form of
oral stories. However, because of colonisation and the enforcement of western methods and
understandings of health, particularly mental health, these holistic traditional understandings
and approaches to health have been largely ignored and overlooked (Doyle, 2011:22; Kopua
et al., 2020; Taitimu et al., 2018).
Pākehā (European) colonisers rejected Māori cultural methods and understandings of
health in favour of their “civilised” western understandings, prioritising the biomedical model
of the west over what they saw as the “misinformation” and “ignorance” of Māori (Kopua et
al., 2020; Taitimu et al., 2018:156). This forced imposition of a single conception of the self
created internal and external tensions, leading to despair and despondency and constructing
poor social determinants for Māori by taking away and invalidating their histories, language,
culture, identity, and land (Boulton, 2005; Doyle, 2011:20, 22; Kopua et al., 2020:376; Taitimu
et al., 2018).
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Māori have been engaged in activism to reclaim their histories, culture, and mana
(honour, respect and power that is handed down generationally) since they were stolen in 1840.
They have been fighting to regain their understandings of health. Instances of this activism
appear in the appointment of Māori practitioners who apply traditional Māori understandings
of health to help Māori and Pākehā New Zealanders with their health and wellbeing, in
particular their mental health. Mahi a Atua wānanga (active engagement with Māori drawing
from Māori creation and histories to further learning), conceived as a way of being and
engaging with whānau (family) in distress, have been implemented in recent years to encourage
the empowerment of Māori and to reassert a positive association with Māori culture and
identity, particularly in the health system (Kopua et al., 2020:378). Māori are significantly less
likely to go to the doctor because of their systemic alienation within a westernised health
system and the treatment they receive leading to poor overall health and mental health
outcomes (Boulton, 2005; Kopua et al., 2020:378). To aid in understanding and respecting
Māori culture and understandings of health, the taha Māori training programmes for nurses
have been established; the Treaty of Waitangi is also considered when providing care for
Māori, with practitioners being encouraged to ponder “how things might be done in a Māori
way” (Boulton, 2005). This “return” to traditional values and understandings of health proves
to strengthen cultural and ancestral identity, playing a critical role in upholding mana and
wellbeing (Bolten, 2012; Durie, 1985, 1997).
Colonial views of mental health
Attitudes about mental health and the mentally ill were transported from England to Aotearoa
with the missionaries and colonisers in the 1800s; as such western notions and understandings
of mental health and illness have been the prevailing “school of thought” in Aotearoa, as
demonstrated above. While it is difficult to find instances of mental health activism in the
42
historical record for the first 100 years (1840–1940) of Aotearoa’s history, a great deal of
legislative and social change did occur through that period. It would stand to reason that for
these changes to have occurred, there must have been some form of activism driving them. In
the 1840s, the mentally ill were held in prisons, demonstrating a societal view of them as social
outcasts not deserving of care (Brunton, 2018b). The first mental health legislation was the
1846 Lunatics Ordinance, which stated that a “lunatic” could be held in gaol (jail), another
prison, a public hospital, or an asylum – despite Aotearoa not having any specialist asylums
until 1854 (Brunton, 2018a). It was “humanitarian sentiment” – whereby “lunatics should be
regarded by the state as objects of tender solicitude, and … no pains or expense should be
spared in ameliorating their condition. They wholly condemn their being treated as paupers or
prisoners”, as cited by Brunton from the “Report of the Commission of Enquiry into the
Constitution and Management of the Dunedin Hospital and Lunatic Asylum” – that led to the
establishment of proper asylums (Brunton, 2018a). To ensure that the mentally ill were being
treated fairly and humanely, the 1868 Lunatics Act was created to implement regular
independent inspections (Brunton, 2018a). In 1911 the Mental Defectives Act replaced the
Lunatics Act, demonstrating an evolution of the language used to refer to the mentally ill and
changes in attitudes towards them, ushering in the shift from lunatic asylums to mental
hospitals (O’Brien & Kydd, 2013:4; Soosay & Kydd, 2016:43). Additionally, the 1911 Act
introduced “voluntary boarders” and did not require a friend or family member to initiate
discharge (O’Brien & Kydd, 2013:4). Protests over the stigmatisation of the label “mentally
ill” continued in 1917 as soldiers returning from the war were placed in mental hospitals to
recover (Evening Star, May 4, 1917, p. 1). In the 1920s saw the initiation of issues of patient
overcrowding and understaffing in the mental health sector, which continue to this day.
However, in the 1920s two revolutionary concepts gained traction that set the precedent for
how mental health is thought of today, advocated by Dr Marshall Macdonald: firstly, that
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medical students should be trained in mental diseases and a chair of mental diseases appointed
at Otago Medical School, and secondly, that sexual (and violent) offenders should be
segregated from the rest of the mentally ill population because being mentally ill did not equate
to being violent (Gisborne Times, July 8, 1924, p. 3). Additionally the end of the 1920s saw
the beginnings of social discussions about mental health policy change. While it may not have
been seen as such at the time, I believe this was one of the defining realisations in dismantling
the myth that the mentally ill are all violent criminals that need to be met with force, beliefs
that seem to still be prevalent in some countries in 2021. However, the calls for the sterilisation
of disabled individuals and their prevention from getting married also extended to the mentally
ill and were made in the hopes that this would stop the “production of defects”. However, these
arguments were met with stern resistance, many refuted on the grounds that “mental defects”
will not necessarily produce “mentally defective” children, just as “healthy” parents will not
always produce a “healthy” child (Ashburton Guardian, November 18, 1929, p. 5).
The 1930s saw the ushering in of a new era in the treatment of mental illness. From
working with soldiers suffering from shell shock, new techniques of care were developed, and
the mentally ill were no longer considered incurable. The development of medications and
these new treatments that focused on working with both the body and mind saw a change in
what mental hospitals, now known as psychiatric hospitals, stood for – language again shifting
to reflect changes in societal understandings and attitudes towards mental illness (Press, March
21, 1938, p. 7). With a new wave of soldiers in the 1940s suffering from shell shock, the focus
moved more toward understanding what mental illness is, where it comes from, and what more
can be done for patients (Press, October 21, 1944, p. 8; November 25, 1944, p. 3). Revisions
of what the term “mental” encompasses began to take place. As shown above, those that were
“mental” were considered criminal and placed in a gaol, before the establishment of asylums
where they were considered morally ‘dirty’ and in need of “moral management” (Brunton,
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2018a, 2018b). This confinement eventually shifted into actual forms of care. The world wars
also facilitated a shift in social views of those that were “mental”, creating greater
understanding of the cause and effects of mental illness (Brunton, 2018a, 2018b). Links
between mental and physical health also became more pronounced as understandings of these
causes and effects began to develop (Auckland Star, October 17, 1945, p. 4; Brunton, 2018a,
2018b). These changing conceptualisations led to an increase in fostering public education and
understanding of mental illness (Auckland Star, October 17, 1945, p. 4; Press, October 21,
1944, p. 8; November 25, 1944, p. 3) to create a “more sensible and more tolerant attitude
toward mental illness” (Press, November 25, 1944, p. 3), foreshadowing the implementation
of a community-based model of care in 1969 with deinstitutionalisation (Brunton, 2003).
Growing global mental health activism in the late 20th century saw significant policy reform.
In Aotearoa by the 1990s almost all psychiatric hospitals had been closed, instead replaced by
community care. The shift to this model put the onus of patient care on private providers and
community networks rather than government entities. With this deinstitutionalisation, care
took on a more values-based focus of putting the patients first and involving their social
networks and communities in their care: “The involvement of family, friends, and/ or carers in
the assessment is important” (The Press, Christchurch, October 6, 1999, p. 22). In 1996,
following an inquiry into mental health services, the Mental Health Commission was
established, demonstrating another shift in language (Ministry of Health NZ, 2021a). The
primary objectives of the commission were to advise the government, facilitate research, and
reduce discrimination against those with mental illness; in 1998, the Mental Health
Commission Act was adopted to provide independent advice to the Ministry of Health on the
state of national mental health (Ministry of Health NZ, 2021a). The commission was
disestablished as a part of the Crown Entities Reform Bill in 2012; prior to that published
Blueprint II: Improving Mental Health and Wellbeing for All New Zealanders, building on the
45
first blueprint from 1998 and outlining what needed to be done between 2012 and 2022 to
improve mental health services (Ministry of Health NZ, 2021a).
Mental health activism today
This brings us into a discussion of what mental health activism looks like now in the 21st
century. Nowadays activism exists in more overt forms, particularly over the last decade
(2011–2021). Like disability activism, there has been a return to issues that plagued mental
health activists of the past, the most pressing being an absence of funding and mental health
staff. The mental health sector has been protesting, petitioning, and speaking out about the poor
treatment of mental health workers, both from assault by patients and from overwork due to
underfunded systems and understaffed facilities since 2002 (Johnston, 2002). There have been
several instances of mental health workers speaking out about the poor funding and lack of
support in the sector (McAllen, 2017; Pinder, 2011; Heather, 2014; Whyte, 2018). While many
of the workers express wariness at “exposing” the difficulties of working in the mental health
sector for fear of deterring graduates from following that career path, they also state that it is a
necessary risk because “it highlights aspects of the mental health system that need to improve…
it [media coverage] has some value in possibly encouraging political action” (McAllen, 2017).
Mental health nurse Andy, interviewed by Jessica McAllen for RNZ, pointed out that the more
media coverage, the better, saying: “It seems to be the only thing influencing change at a
government level. Mental health services remain severely underfunded and it is at crisis level”
(McAllen, 2017). Advocacy and activism in public forums are effective because they force
engagement and have an influence on public opinion, application of social pressure, and
accountability of the state (Burt, 2013:32). Public activism demonstrates to politicians what
people want, and often, it gets things done. Following calls in 2018 for an “urgent
transformation” of the “patchy and under-resourced” mental health system that fails those at
46
high risk and in serious distress (Whyte, 2018), the 2019 wellbeing budget was released
dedicating 1.9 billion NZD to developing the mental health sector over the course of five years
(Roy, 2021; Sutherland, 2019). Of this budget, 40 million NZD was for suicide prevention and
more mental health nurses in schools and 455 million NZD for “new frontline” services for an
estimated 325,000 people (Sutherland, 2019). The rest was set aside to strengthen existing
services (increased funding for staff) and tackle the social determinants of poor mental health
and mental illness, such as family violence, poverty, and homelessness. This budget also
allowed for the re-establishment of the Mental Health and Wellbeing Commission (Roy, 2021;
Sutherland, 2019). This has been viewed as a “step backwards” as it “shows how far we have
not come” in failing to address the pressing and growing mental health needs of New
Zealanders (Sutherland, 2019), with the new commission simply reclaiming the duties of the
previous one, which were to assess and report publicly on the state of mental health and
wellbeing in Aotearoa, promote alignment and communication between entities involved in
aiding in mental wellbeing, monitor and advocate for the improvement of mental health
systems and services, and advocate for the collective interests of those that suffer from mental
distress and those that support them (Ministry of Health NZ, 2021b). Interestingly, the budget
also promotes a holistic approach for the mental health care for all New Zealanders, which also
happens to be the traditional Māori approach to wellbeing (Roy, 2021; Sutherland, 2019).
The investment into mental health services as suggested by the 2019 wellbeing budget
is critical because until 2016 mentally ill individuals, who the police were called to ‘deal with’,
were still being detained in police cells while awaiting psychiatric assessment because of
overcrowding in hospital facilities (Stuff, 2016). This is despite measures being taken in 2014
to prevent the mentally ill, who have not committed a criminal offence, from being taken into
temporary police care (Leask, 2014). Police are inundated with calls from the public about
mentally ill individuals because they are “who people think to call when they need help”
47
(Leask, 2014), but they often do not have the training or the right to detain them, leading to
several independent inquiries into unlawful detention of mentally ill individuals (Leask, 2014;
Stuff, 2016). To try to prevent the mentally ill being dealt with by people not trained to do so
and facilitate appropriate engagement with them, the Mental Health Interventions Team was
established in 2014 along with new training at the police college, both for the safety of the
mentally ill and to limit the wastage of resources (Leask, 2014). However, the mentally ill were
still being “monitored” in jail cells by overrun police officers who did not have the resources
to dedicate to supervising them – leading to many instances of near-deaths from suicide
attempts or lack of medical care (Stuff, 2016). It is interesting that the default is for the mentally
ill to be held by the police even if they are not suspected of having broken the law, given the
history of their being housed in prisons in Aotearoa. I believe that the perception of the mentally
ill as dangerous is still prevalent in the nation’s collective subconscious, and this is why the
police, rather than paramedics, for example, are people’s first point of call. Given the criticisms
above about the lack of progress in mental health services and mindsets in Aotearoa, this
unconscious bias would not come as a surprise.
With the seemingly subconscious social biases shown above and stagnant progress of
official channels, with the same ideas being revised without much tangible change, the future
of mental health activism seems to lie in social media and “keyboard warriors” (Ooi et al.,
2021; Sehgal, 2020). Social media has the ability to disperse information rapidly (Shifman,
2014) – as will be discussed further in Chapters Three and Four – and bring about social and
political pressure to instigate change through sheer public engagement – something traditional
methods have done, but never on the national and global scale that has been seen from
engagement with social media (Ellis & Kent, 2015:424–25). My respondents Alexios, a 21-
year-old Pilipino/New Zealand man, Sofia, a 21-year-old Pākehā/Māori woman, and Hermione
(introduced above) consider themselves to be social media mental health advocates. All three
48
have educated themselves in various topics of mental health and illness, spoken up on mental
health issues, and volunteered their time to spread mental health and illness information and
promote mental health education. While they all feel that sharing official information and
linking studies and statistics about mental health and illness is important, they all also focus on
incorporating their own stories when they share this information. Collectively, they hold the
view that people are much more likely to understand and engage with personal anecdotes over
official boring jargon. As Sofia states:
If I post up one of my uni [university] assignments about different therapies, you
know, people can read it, but they might not necessarily understand the language
that I’ve used, and therefore they might not be able to connect to it as well.
Whereas if I use my everyday non-academic language, they’ll be like, “Oh yeah,
this is a normal person, I can feel comfortable, and I can relate to it. So, I can,
you know, add on me [add a comment about their experience]”. I think that
people are a lot more willing to read things that come from personal raw feeling,
or emotion, or life experience as compared to like a five-page journal article out
of Psychology Today.
This personalisation of content also creates a feeling of sameness and shared experiences,
which makes people feel more comfortable and able to reach out to one another, something
that is missing from official services, particularly when they outline specific symptoms and
criteria that individuals with a mental illness do not identify with, as Cyra, a 22-year-old
Indian/New Zealand woman, notes in her engagement with ADHD groups on Twitter. This
type of activism helps start the conversation and cultivate safe spaces for it to grow. It only
takes a spark to ignite a forest fire, and it only takes a handful of individuals willing to share
their honest stories and experiences for others to feel safe to talk about theirs. The more people
that openly discuss mental health and wellbeing, the better the care, understanding, and
resources that will be available for them.
49
Conclusion
Returning to the ideas presented at the onset of this chapter, how something is remembered
affects how it is presented and thought of in the present. At first sight, disability and mental
health activism and rights seem progressive in Aotearoa. We have a disability ministry and a
mental health and wellbeing committee. Yet upon deeper inspection, it becomes obvious that
general social understandings of how disability and mental health are experienced in Aotearoa
are instances of hidden histories. History is an ever-changing tale of revealed facts and
interpretations that requires constant revision; we look to the past to learn for the future. But
when looking at the past of disability and mental health activism, it is a sad tale of repetition.
As outlined above, the same battles are being fought over and over again, demonstrating that
structurally very little has changed. By allowing the structural erasure and distortion of
disability and mental health histories by ableism, we are allowing for the oppression of these
groups to continue. An example of this is the decommissioning of the Mental Health
Commission and its subsequent recommission without any explanation as to why it was
disbanded, acknowledgement of its past, or recycling of the same mandates. Social attitudes
towards disability and mental health and the open discussion of them have indeed changed;
they are more accepted and openly spoken about, but I question whether this is a genuine
change in perception or people showing agreement in public spaces for fear of being
“cancelled”. A point to note is the ways in which activist language has changed over the last
130 years. Today there must be an overt challenge, calls for change, or expression of
displeasure for action to be considered activism. However, in the first century of colonised
Aotearoa, it was enough to simply talk about these issues in a non-negative light because that
was the social standard. So, I wonder, have things changed in name only? I do not presume to
know the answers to what is next. I only know that these histories have been hidden, and I
50
question why. Why have we – citizens and scholars of Aotearoa – allowed them to be hidden,
buried, and allowed to replicate quietly while we claim progress? Why, despite advocacy over
the last 130 years, have the fundamental rights of disabled and mentally ill individuals not
developed further? Why are they still seen as burdens on society rather than unique individuals
who offer diverse skills, like in Māui’s tales?
The crux of the issue is that while it looks like we have come a long way since disability
and mental health activism began, the issues at their core are still the same, and the rights being
fought for are still very similar because the ableist foundations of society have not changed.
Despite everything that has been done and achieved, the way they are viewed in society still
has a long way to go. Every time slurs are thrown at individuals with disabilities or mental
illness, every time they are discriminated against overtly or inadvertently, they are being
systematically censored by social structures that leave me to ask: is the creation of a disability
ministry and a mental health commission too little, too late? Can they bring about tangible
change? In the following chapters, I explore some of the questions posed in this chapter through
an examination of the politics of language used to represent disability and mental health in
society and policy, the role of digital exploration and social media in advancing disability and
mental health rights, and finally, the effect of the Covid-19 pandemic on the disabled and
mentally ill.
51
Chapter Two: The Politics of Language
Language, on the surface, may not seem to be one of the most important aspects when
discussing mental health and disability, but I argue that it is the most important because within
its wider significance is the articulation of the ableist systems and assumptions embedded in
legal rights, health care, and social systems (Block, 2020; Durban, 2021). As mentioned in the
previous chapter, language reflects social norms and dispositions – it embodies these and
further perpetuates them. It is both dangerous and key to changing attitudes towards mental
health and disabilities in Aotearoa. This chapter will analyse the politics involved in disabilities
and mental health language. In English several words can be used to describe any one idea,
each with their own social implications and historical meanings and biases (Morgan, 2004:9).
Words chosen hold power and meaning: along with the spoken meaning there are sub-textual
meanings, resonances, and implications derived from the choice of one word over another to
express the same idea, stressing the importance of society and culture in the creation and
understanding of language (Ardener, 1971; Bucholtz & Hall, 2004; Duranti, 2004; Duranti et
al., 2003; Eckert & Wenger, 2005; Grillo, 1989; Kroskrity, 2004; Morgan, 2004; Philips, 2004;
Reyes, 2014; Woolard, 2004). An example would be modern policy using the language of
handicap rather than disability, demonstrating a continual struggle for language that is seen as
inclusive, accurate, and non-judgemental. The language used in policy and by government
officials is of particular importance because it reveals the underlying motivations and social
attitudes towards a topic. Understanding youth participation in online communication around
mental health and disability is contingent on understanding the nature of these distinctive
hidden attitudes informing our language (Bucholz & Hall, 2004:376). Furthermore, language
reveals elements of identity and is a key component of cultural performance and understanding
(Ardener, 1971; Austin, 1962; Boyer & Yurchak, 2010; Bucholtz & Hall, 2004; Crowley, 2003;
52
P. Davison, 2012; Duranti, 2004; Duranti et al., 2003; Eckert & Wenger, 2005; Egbert &
Keating, 2011; Goodwin & Goodwin, 2004; Grillo, 1989; Keating & Egbert, 2004; Kroskrity,
2004; Kulick & Schieffelin, 2004; Lambek, 2010; Mayr, 2008; McCormack et al., 1979;
Morgan, 2004; Philips, 2004; Reyes, 2014; Shifman, 2014; Suchman, 1994; Thomas &
Wareing, 1999; Wilce, 2004; Woolard, 2004).
Languages of disability and mental illness
When asked what a disability is, my respondents typically focused on the disabling effects of
something, rather than on impairment itself. This focus on the disabling effects rather than on
the impairment reflects the difference between official ableist-based discourse and grassroots
disabled voices. For instance, Cyra, a 22-year-old-woman studying at university who suffers
from anxiety and depression and is seeking a diagnosis of ADHD, states that if something
disables you and prevents you from being productive in whatever capitalist,
neoliberal way […] then it is a disability.
Similarly, Leda, a 20-year-old-female Pākehā/Māori university student, says,
Disability is something that regularly and consistently impacts your life and
prevents you from doing what is, I guess, expected of you to do. Or […] to what
you would assume to be the best of your ability. […] it prevents you from doing
what you want to do, how you want to do it.
Demas, a 22-year-old Pākehā man, continues this focus on the “normative” body,
stating,
[If something is] encroaching on your life and how you normally do day-to-day
[activities], I would say that is a disability.
Cyra, Leda, and Demas focus their understandings of disability on what is expected of a
“normal” and “healthy” body in western capitalist societies. Others stressed the inaccessibility
of society. Athina, a 19-year-old Pākehā/Māori woman and university student who is a part of
53
the National Disabled Students’ Association (NDSA), explains this as an incompatibility of
one’s physical body with their environment:
[Y]our physical circumstances or your accommodation needs vary from your
environment. […] in this sort of world it means you face barriers.
Melissa, a 22-year-old Pākehā woman, also comments on this incompatibility:
Disability is the] inability to control your own environment. Like doing everyday
things gets a bit harder than it should be.
Phaedra, a 21-year-old Pākehā/Māori woman and university student, expands further on the
notion that environments construct disability, saying:
[W]ider-world influences and ingrained obstacles maintained by society affect
someone’s lived experience in navigating the world with a disability.
As these statements suggest, for them, disability thus entails expectations of the body and how
it should perform, the social barriers it faces and the social space that creates disability. If a
body is unable to function or meet the expectations of society, then it is disabled – out of action
or broken.
Interestingly, Sofia begins to consider who is thought of as disabled, what they look
like, and where these notions come from:
[A]ll throughout my life it has been ingrained into me from society that disabled
people, you know, are physically disabled. They look it, they need extra things
to help them. […] if you were to go out to the street and ask any random person,
oh, can you tell me what a disabled person looks like? They’ll be like, oh, you’re
in a wheelchair or crutches or something like that.
In this account, Sofia demonstrates the ingrained societal expectations of what disability is,
and by extension, what it is not. A disability, by these standards, is a physical condition that
limits an individual’s mobility. While my participants and the literature acknowledge the role
54
of impairments in disabling an individual, they tend to focus on the roles of society and
language in constructing the narratives of disability, thus placing the responsibility for the
disabling factors onto the barriers created by society (Aneshensel et al., 2013; Alvermann,
2004; Ellis et al., 2019; Ginsburg & Rapp, 2020; Hartblay, 2020; Inhorn & Wentzell, 2012;
World Health Organization, 2011). This is further exemplified by Adriani, a 22-year-old
Pākehā woman and mental health nurse, who states that disability is defined by the way “it
affects you negatively” socially: these effects do not affect impairments on the same “level”
but rather each involves a different set of obstacles and barriers, creating “different levels of
hardness to life”.
In Section Two of the New Zealand Mental Health (Compulsory Assessment and
Treatment) Act 1992, there is no use of the terms mental wellbeing, mental illness, or mental
health in relation to individuals. Instead, the document uses the dated language of “mental(ly)
disorder(ed)”. The Act states:
Mental disorder, in relation to any person, means an abnormal state of mind
(whether of a continuous or an intermittent nature), characterised by delusions,
or by disorders of mood or perception or volition or cognition, if such a degree
that it (a) poses a serious danger to the health or safety of that person or of others;
or (b) seriously diminishes the capacity of that person to take care of himself or
herself. (Mental Health (Compulsory Assessment and Treatment) Act 1992:
section 2)3
However, there are calls to repeal and replace the Mental Health Act. These calls began in 2019
but have since intensified in the context of Covid-19. The review report (He Ara Oranga) into
the state of the Mental Health Act concluded that the Act “has not kept pace” with the shift to
3 https://www.legislation.govt.nz/act/public/1992/0046/latest/DLM262181.html
55
human-rights-based models of care which focus on recovery and wellbeing (Government
Inquiry into Mental Health and Addiction, 2018). There are two prominent factors driving this
overhaul of the Act. The first is to address the “technical drafting issues” of the Act. The second
is to remove the sunset clause (the date the Act automatically expires; Kenton, 2020) for the
technical and audio-visual link amendments made by the Covid-19 Response (Further
Management Measures) Legislation Act 2020 (Little, 2021). The first of these issues is blatant
in the outdated language used in the Act, as seen above. The Act does not acknowledge the
nuances of mental health, mental wellbeing, and mental illness and instead uses the
stigmatising language of mental disorder.
I argue that in these revisions we need to consider mental illness as a disability (cf.
Mulvany, 2000:584), because disability is a social construction, encompassing the perceived
limitations and stigmas surrounding an impairment – an impairment being a difference in a
person’s body structure or function or mental functioning (CDC, 2020). By applying disability
theories to analyses of mental illness, a complex and multilayered framework of social
restrictions, disadvantages, oppression, and stigma begins to emerge where a clinical
medicalised view of disability and impairment used to be. This shift to a “process of social
oppression, discrimination, and exclusion” leads to questions raised by Foucault’s biopolitics,
which he defines as government regulation of populations through biopower – the application
and impact of political power on all aspects of life (Foucault et al., 2008:6) – which
encapsulates instances of institutional oppression, wherein social barriers deny those with
“psychiatric disabilities” their rights of citizenship (Mulvany, 2000:582, 585).
Similarly, as shown above when defining disability, my participants talked about the
disabling effects of mental illness and how it constrains an individual from living their normal
day-to-day existence. Sofia speaks about the intersection of disability and mental illness:
56
I’m mentally not functioning the same as anyone else. That makes me
disabled in a sense, because I can’t do my everyday tasks the same as
someone else. I can’t... like, get out of bed and be a happy, normal,
functioning human without taking 150 milligrams of sertraline [a common
anti-depressant] every day.
Interestingly, the only time any of my respondents outright used the language of disability
rather than disabling was regarding mental health. Whenever mental illness was mentioned,
they always referred to it as disabling, but made the point that they do not believe it is a
disability. Alexios, Sofia, Leda, and Cyra offer an explanation as to why this is. They state that
the key difference between disability and mental illness is the term illness. An illness can
typically be “fixed” or “cured”: it is not a permanent state, whereas a disability, despite the
fluctuations in its intensity and impact from day to day and second to second, is not “fixable”.
As Melissa states, the distinction is not black and white. My respondents are clear about this
distinction so as to neither romanticise mental illness by classifying it as a disability (something
someone “just lives with and deals with”) nor diminish the experiences of impaired individuals.
They stressed this because of the romanticising of mental illness previously seen in digital
spaces, most notably on Tumblr. This romanticising of mental illness tended to encourage
escalations and unhealthy behaviours – such as anorexia and self-harm.
While I agree that it is important to not romanticise mental illness, I wish to illustrate
the parallels that exist between the language and experiences of mental illness and those of
impairment. Firstly, I purposefully employ the term impaired here as opposed to disabled
because, as discussed above, disability is a socially constructed barrier which affects people
and prevents them from engaging to their fullest abilities. This definition applies to both
impairment and mental illness. Just as impairment and its effects can vary from day to day and
from minute to minute, so too can the severity of mental illness. Like chronic illness, mental
illness causes serious long-term functional impairments with lasting impacts over an
57
individual’s life course, especially when it first appears in adolescence (Groce, 2004:15;
McGorry et al., 2007:S5; McGorry et al., 2013: S30). Just as impairments can become chronic
and disabling, so too can mental illnesses as they continue to manifest with varying severity
across an individual’s lifespan (Dashiff et al., 2009; Groce, 2004; McGorry, 2007; McGorry,
Bates, & Birchwood, 2013; McGorry, Purcell et al., 2007; Webb et al., 2008; Zaffar, 2021;
Zito et al., 2001). Interview participant Hermaphroditus, a 16-year-old, non-binary
British/Pākehā high school student, describes defining mental health and mental illness as
disabilities in terms of their permanence. They claim,
They [the effects of mental health] are not disabilities, in the same way that
having an injury isn’t a disability. Mental health is the same, in my mind, the
same level as like physical injuries. […] I believe if [mental illness] is a
permanent sort of injury of mental psych or whatever, then it would be classed
as a disability in my mind. To me… disabilities are more of the permanent
ones.
It is interesting that Hermaphroditus inverts what the other respondents said regarding disabling
effects versus disability. Hermaphroditus claims, like the literature, that because mental illness
is a permanent state that can fluctuate over one’s life, that makes it a disability. On the flip side,
Hermaphroditus’s claim implies that mental health is more of a temporary fluctuation based on
temporary environmental factors and inputs. To put this example of permanent and temporary
injury into context, mental illnesses, such as depression or PTSD, are permanent injuries, and
their severity fluctuates over the course of an individual’s lifetime due to environmental
triggers. Mental illnesses, then, are disabilities because they are permanent impairments which
can only be treated and not cured. A stressful week at work, which can decrease mood and an
individual’s overall mental wellbeing, is a temporary injury because it will resolve once the
environmental factor (a stressful week at work) is removed.
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Language in practice
Above I outlined the language used to describe disability and mental illness and claimed that
understanding the use of this language is important to understanding the socio-cultural
dispositions towards disability and mental illness. These socio-cultural dispositions are
revealed through John Austin’s concept of linguistic phenomenology – the analysis of concepts
and expressions in everyday language (Austin, 1962). Speech act theory examines the
“recurrent patterns of communication in which language provides the coordination between
actions” (Flores et al., 1988, quoted in Suchman, 1994:179) – or, as Austin (1962) states, the
combination of speech acts. Language is a performative action. When language is seen as an
action, it is clear that the utterance has specific intent, a purpose it is meant to fulfil, although
this intent may not match the impact and interpreted meanings of the utterance. Language is
therefore a social action and utterances moments of social interaction. The understanding of
language as social action, coupled with the notion of communities of practice – the conferring
and exercising of power in day-to-day linguistical practices (Eckert & Wenger, 2005:582) –
sets the stage for the development of more recent conceptions of speaker and hearer(s) (Austin,
1962; Crowley, 2003; Goodwin & Goodwin, 2004; Keating & Egbert, 2004; Kulick &
Schieffelin, 2004; Suchman, 1994; Woolard, 2004).
Understanding the power relations within and behind the social action of language is
important to understanding discussions about disability and mental health in online spaces. The
language choices of online activists, everyday users, disabled users, users with mental illness,
and political entities all reflect and affect the social norms and understandings concerning these
issues. For instance, ableism dominates our understandings of language and creates a
gatekeeping effect. This is exemplified by interlocutor Cyra, a 22-year-old New Zealand Indian
woman studying at university, who has experienced mental illness and identifies as disabled.
Cyra outlines an interaction with her therapist where she is told, “You’re not disabled, you’re
59
neurodiverse”, to which Cyra responds, “No, I mean disabled – I am disabled”. In this exchange
Cyra’s experiences and expression of her experiences are being ignored and altered by ableist
frameworks and thought in the form of her therapist. Another example of this is the new
Ministry for Disabled People. There have been debates over the choice of using “disabled
people” over “people with disabilities”. An example of this can be seen on the post
“Government announces new Ministry for Disabled People and accessibility law” in the
“newzealand” subreddit. In the comment section of this post user A asked, “Do you care how
it’s phrased?” in reference to the difference between using “disabled people” or “people with
disabilities”. Many people responded that person-first language (people with disabilities) is
preferred as it is more polite. User B explains,
Loads of us don’t really care (unless it’s obvious the person is being a turd and
defining us by our disability), but a large majority of us prefer person first. […]
It’s worth noting that people with really intense life changing disabilities tend to
have more of a preference for person first language […]. The real no is not even
referencing personhood. Like calling someone ‘a disabled/insertslurhere’.
User D replied that “ ‘people with disabilities’ starts by specifying [that] they are people”,
which is what makes it more courteous language. User C, meanwhile, argued that “The term
disabled people is social model language. […] I prefer this language since it implies that it is
society that had something wrong with it, not me”. User B follows up stating,
I personally don’t care what people default to, and I feel people should understand
that neither is intended to be offensive […]. [But person-first language] is usually
the best use case for official policies.
This example demonstrates the complex conflicts and relationships between language,
meaning, and people. In this instance, for the disabled community it appears to come down to
what is more important – a person being seen outside their impairment, or disability being seen
as a problem with society rather than with the person.
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Discourse is a product of knowledge endowed with the performative power to bring
into reality what it describes; it is the idea of culture as text (Duranti et al., 2003:329; Morgan,
2004:17). It means something and it does something which is linked to the context of use
(Mayr, 2008:3, 7; Morgan, 2004:17). In order to understand or decode what the speaker wants
to say – what they are doing through discourse – one must examine the context in which the
discourse resides because it will have differing encoded meanings in interpersonal,
institutional, socio-cultural, and material contexts (Mayr, 2008:7). Therefore, institutions are
shaped by and themselves shape the discourse of their “subjects”. It is those with social and
political power that create this cycle of creating, using, and spreading discourse (Mayr, 2008:1;
Thomas & Wareing, 1999:11). Mayr (2008) claims that institutions, through imposing
ideology-filled discourses upon their subjects, seek to legitimise their own interests and
existence. Weber et al. (2004) asserts that the institution’s power must be legitimised and
justified in order to be accepted socially (Mayr, 2008:2–3, 5). Furthermore, Eckert and Wenger
(2005:586) claim that this consensual hierarchy is born through status within the institution
and the ideologies of control which afford individuals power and status. Discourse is social
practice, which represents and (re)produces social realities grounded in institutional status and
power (Austin, 1962; Bourdieu & Nice, 1977, 2010; Boyer & Yurchak, 2010; Mayr, 2008;
Morgan, 2004); it is what constructs the disabled and mentally ill as the Other. This Othering
reflects the “markedness model” – the social power dynamics within society that assign
markedness to any social categories that oppose the default status, the unmarked – straight,
white, able-bodied and so on (Bucholtz & Hall, 2004:372; Thomas & Wareing, 1999:87;
Woolard, 2004). Hegemonic identities are unmarked, denoting their social power; they are the
unspoken standards for social reproduction and reinscription. They challenge the marked and
their identities and language – the language and structures that differ from the “norm”
(Bucholtz & Hall, 2004:372). Bucholtz and Hall (2004:372–73) claim that markedness is used
61
to justify instances of social inequality, constructed through language and discourse. Unmarked
discourse tries to erase the marked, and those that cannot be erased are depicted as socially
deficient, as I demonstrated in the previous chapter. Philips (2004:474) supports this point,
noting that “[a]t the heart of the relationship between language and social inequality is the idea
that some expressions of language are valued more than others, in a way that is associated with
some people being more valued than others and some ideas expressed by people through
language being more valued than others”. The power dynamics between the speaker and the
hearer that are embedded in this concept of markedness demonstrate anthropologist Ralph
Grillo’s claim that “questions of language are basically questions of power” (Grillo, 1989:2). I
explore these ideas further in Chapter Three, where I investigate the voices of youth with
disabilities and mental illness in digital spaces.
Questions of who belongs and who is valued also arise within the concept of the speech
community (Ardener, 1971; Boyer & Yurchak, 2010; Bucholtz & Hall, 2004; Crowley, 2003;
Duranti et al., 2003; Grillo, 1989; Keating & Egbert, 2004; Kroskrity, 2004; Lambek, 2010;
Morgan, 2004; Philips, 2004). Morgan (2004:3) defines speech community as “the product of
prolonged interaction among those who operate within shared beliefs and value systems
regarding their own culture, society, and history as well as their communication with others”.
Each have their own unique languages and histories; historian and anthropologist Daniel
Crowley states that “language is ‘the living and speaking witness of the whole history of human
beings’ […] A language has within itself the history of a nation. [It] is ‘full of instruction,
because it is the embodiment, the incarnation […] of the feelings and thoughts and experiences
of a nation’” (Crowley, 2003:56, 58, quoting Müller, 1862 and Trench, 1851). For instance,
historical queer subculture has its own language, Polari. These historical imprints of language
are seen in how groups interact internally but also with those outside of their speech
community. For instance, where the same word is used by multiple groups but with different
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meanings and connotations, language is the carrier of social categories (Bucholtz & Hall,
2004:370; Crowley, 2003:56, 58, 83; Grillo, 1989:4–9; Morgan, 2004). This is demonstrated
by the recent reclaiming of the term “special needs” by some of the disabled community, as
demonstrated by a post made on January 18, 2021, in the Facebook group Disability
Connections New Zealand, wherein some members commented on the post claiming the term
because “we” are “special people”. The “reclaiming” of terms by speech communities is
important because it demonstrates the power embedded in language as a social product, bearing
the marks of past and present history (Crowley 2003:229; McCormack et al., 1979), as well as
language’s status as a political object (Grillo 1989:8).
From about the age of 10 or 11, I can remember repeatedly hearing the phrase
“everything is too damn PC [politically correct]” from family, and friends my age. At the time
I did not really understand what this meant, but like any child I replicated the language and
ideas of those around me. By the time I was about 15 or 16 the term PC had lost some of its
steam in everyday language, and in the five years since leaving high school (I am now 23), I
can count on both hands the number of times I have heard the term said in conversation. I am
under no illusion that this is because people have stopped complaining about how “PC
everything has become”: rather, through becoming a self-thinking and reflexive individual I no
longer engage with people who peddle these views, because when someone says that
everything is too PC, what they really mean is that they can no longer throw slurs at minorities
without social judgement. A more recent term with similar connotations is “woke”. However,
rather than being used by (typically) politically conservative individuals, as the term PC was,
it is utilised by (typically) politically liberal individuals. Wikström (2016:165) demonstrates
that the aversion to PC language is because it prevents people from being bigoted and rude. In
“example 5” (Wikström, 2016:165) Twitter user A shares a quote stating “I will speak the
truth regardless of what media and the PC police say”, and user B replies sarcastically “Because
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there is no politically correct manner in which wapo [the Washington Post] knows how to
present truth?” A common critique is that PC language has gone “too far”, to the point of being
ridiculous and ineffective (Moss & O’Connor, 2020; O’Neill, 2011), and to an extent I agree.
For instance, as is demonstrated by Caplan (2008:14), the language used to describe disabilities
has seen significant “corrections” over the years from “crippled” to “handicapped”, “disabled”,
“physically challenged”, and finally “differently abled”; the latter two terms she states (in
2008) as having become the common ones. However, a majority of the disabled community
dislike “physically challenged” and absolutely loathe “differently abled”. On Reddit, a post
titled “Using the term ‘Differently Abled’ in reference to someone with physical disabilities is
not acceptable and is not empowering to be referred to as such. It is degrading and demeaning”
is an excellent example of this. The author’s primary point is that these terms were not chosen
by disabled individuals but rather for them, demonstrating the systems of ableism within which
disability exists.
This increasingly popular term of “Differently Abled” did not come from
disabled people trying to change how we were seen, the term was started by
perfectly able bodied people that didnt like the sound of handicapped and
disabled or the very realistic cripple.
User D comments:
Disabled people have made it clear they find this term demeaning and
unacceptable. The question is are people listening?
To which user E replied:
Yes I agree. People should look to the group they are referring to and ask what
they would like to be called. It’s similar to how people using latinx to refer to
latino people, when the vast majority don’t want to be referred to as latinx. If the
group has a term for themselves (in this case physically disabled or disabled) and
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they are using it in professional settings, it’s generally better to refer to the term
the group uses rather than come up with something you think is better.
The only way in which to achieve the desired effect of PC language – to impose “either explicit
or implicit restrictions on acceptable language for public discourse” in order to replace minority-
demeaning language with language that creates equality and respect (Caplan 2008:13) – is to
listen to and respect the language these groups use rather than telling them they are wrong for
using that language. If the language that communities want to use is ignored because it is seen
as not being PC then those trying to be PC end up creating the environment they are trying to
prevent. Ignoring a group’s preferred terms is the same as ignoring someone’s pronouns. It is
an action through language that tells someone that you do not respect them, will not be inclusive
of them, and in the harshest terms do not want them in “your” society/community as they are.
Application of social discourse and language
The consequences of language and society being irrevocably intertwined is a theme that
emerged from my interviews, even in instances wherein participants did not draw direct
parallels between the two concepts. They all talked about the social power that frames the
treatment of and stigmas directed at people with mental illness and disabilities, and the
prioritisation of profit over human life and wellbeing. There is a consensus that the language
New Zealanders use perpetuates socio-cultural expectations and presentations of identity,
culminating in social standards. These standards often isolate people from the services
available for mental health and disability because, when deviation from these norms occur,
such as cases of “classic” Kiwi blokes seeking help for mental illness, social ridicule and
discrimination can occur, such as in the past being called a “fag” (a derogatory term for a gay
man) or told to “toughen up and take a concrete pill”. For instance, Adriani, explains how some
people within her local community in the South Island do not feel as though it is socially
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acceptable for them to access these services. This is because these individuals are perceived to
be “failing as men” in the sense that they are not adhering to the still-hegemonic socio-cultural
masculinity expectations of their communities. Such mentalities and cultures are extremely
detrimental to the mental health of those individuals subjected to these behaviours and
adversely affect others who do not seek help for fear of similar treatment and dismissal
(Ministry of Health Manatū Hauora 2018, 2019). These behaviours are also dangerous because
they create unobtainable standards of what a specific aspect of identity ought to be (Aneshensel
et al., 2013:357): for instance, that a man is never emotional, never suffers from mental illness,
and cannot be overtly feminine (Johnston, 2021). These false narratives exacerbate worsening
mental health and increase the rates of mental illness that go undiagnosed and lead to instances
of suicide or harm to others (Johnston, 2021). Other expressions – such as “she’ll be right”, a
Kiwi phrase used to express a belief that everything will be all right with time (Cryer, 2018),
and “toughen up” and “take a concrete pill”, or “harden the fuck up” (GCR Staff, 2018) – also
contribute to this macho narrative of the emotionally controlled man. Both the cultures of
“toughen up” and “she’ll be right” are blamed by grieving families for “killing us” and “costing
lives” due to their contribution to toxic masculine and feminine ideologies surrounding
emotional vulnerability, being the “perfect” man or woman, and openness about mental distress
(Cryer, 2018; GCR Staff, 2018; McCool, 2017; Weber, 2017). For instance, in Weber’s (2017)
news article, Bary Neal, the father of Matt, a victim of suicide, stated, “That age group is the
age group where they’re cool, they’re tough. They don’t want to sit there and tell other people
what their problems are, they prefer to try and nut it out themselves, but that kind of culture,
the ‘toughen up’ culture, is costing a lot of lives.” These terms and perceptions are not limited
to men. Women, like men, are affected by stereotypical traditional gender roles, social
expectations left over from British colonisation, and continued perpetuation in mass media of
the idea that they should be “seen and not heard” (Davison & Huntington 2010; MacDonald,
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2020; World Health Organization, 2011). Women “learn” to smile and present an external
façade disjointed from their conflicted internal world (Davison & Huntington 2010:241, 244,
246). They, like men, are socialised by gender roles and powerful but often “out-of-sight”
influences on socially acceptable forms of self-expression and how people are treated if they
do not conform (Davison & Huntington 2010:246). Women are the carers of society, taught to
put others’ needs above their own feelings, emotions, and needs, causing them to internalise
their mental illnesses (p. 246). This is manifested in the “hidden statistics” in which women
have higher instances of self-harm where men have higher rates of completed suicide (Weber,
2017).
The mental health of Aotearoa women is significantly unnoticed unless it is in relation
to the mental health of men – to the extent of becoming a hidden history in its own right.
Women’s mental health is generally only discussed when linked to men’s self and social
repression, denial of mental illness, and declining mental health leading to domestic violence,
alcoholism, and drug abuse (American Psychological Association, 2011; Swarbrick, 2018;
World Health Organization, 2011). Leda drew links between rates of domestic violence and
the social determinants of gender, race, and socio-economic status and socio-cultural
expectations. Historian Nancy Swarbrick supports this claim in an entry she published in The
Encyclopaedia of New Zealand about domestic violence, stating that it often occurs in families
where extenuating social determinants such as poverty, substance abuse, or mental health
issues are prevalent (Swarbrick, 2018). Leda, in discussing the “she’ll be right” and “toughen
up” culture surrounding mental health, noted how the repression and denial of declining mental
health or mental illness can affect domestic violence rates:
I mean, a lot of men, even in my own family’s history, they were dealing with
their own issues. But because they didn’t know how to deal with it, they had to
internalise it. They took it out on the woman in their lives. Which obviously has
the knock-on effect to our domestic violence rates. […] I think it needs to change,
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but I don’t think enough is being done to change it, especially on a government
level.
These claims of men repressing their own issues can be seen in the statistical data. In 2016,
553 people committed suicide, of whom 412 (74.5%) were men compared to 141 (25.5%)
women (as it is not stated I assume that these categories refer to biological sex rather than
gender). That same year, 171,033 people used mental health and addiction services, 89,379 of
which were male (52.3%) (Ministry of Health Manatū Hauora, 2018, 2019). The toll of toxic
masculinity on both men’s mental health and domestic violence rates is explored in a media
article, “Boys (Still) Don’t Cry” (K. Johnston, 2021). In the article, University of Auckland
psychology professor and specialist in gender violence Nicola Gavey is quoted as saying, “It
is so widely globally acknowledged how damaging that … [the repression of emotions] is, both
to … [men], and to the women in their lives… what that does to the psyche, if you can’t show
emotion or hurt or disappointment – that gets turned into anger and violence, and self-harm.”
The article lists restrictive masculine ideals that confine men to the “man box”: “Be strong.
Provide for your family. Pay for meals. Don’t knit or do the gardening. Play rugby. Go to the
gym. Drink beer. Don’t show emotion. Don’t watch television shows about emotions. Don’t
listen to songs about emotions. Certainly, don’t listen to John Mayer.3 You could probably
wear pink, occasionally. But never wear a dress. And don’t cry. In fact, don’t even think about
crying, because that’s acting like a girl. And if you want to be a man, you can’t act like a girl,
ever.”
The “man box” prevents men from acting authentically and forces them to conform to
behavioural expectations that are detrimental to their mental health, but also potentially to the
physical and mental health of those around them (K. Johnston, 2021). This article, citing a
recent study on “the rules of New Zealand manhood, as told to University of Auckland
3 An American singer-songwriter who tends to produce “emotional” songs such as “Slow Dancing in a Burning
Room”.
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researchers by teenage boys”, validates Leda’s claims about the linkages between the
repression of mental health due to masculinity stereotypes and violence towards women in
Aotearoa. This study, conducted by Nicola Gavey, and draws on the works of Australian
sociologist Michael Flood, who has been working in the space of gender and domestic abuse
for almost two decades (cf. Flood & Pease 2009; Jewkes et al., 2015; Johnston, M., 2021).
Not only is the denial of men’s mental illness killing Kiwi men, but as stated above it
is also leading cause in declines in women’s mental health due to men’s abusive behaviours
that are associated with the repression of these emotions. In Aotearoa there is a bias towards
discussing men’s mental health because we see women as being “emotionally free” to express
their mental decline. None of my interview participants brought up how women’s mental
health is discussed online or what the social perceptions of it are, nor did I, at the time, think
to explore this. I think this is in part because Kiwi women’s mental health has never been
presented as the crisis that Kiwi men’s has been by the media. Additionally, the demographics
of online support groups is overwhelmingly female, indicating that women feel more open
about talking about and seeking help for their mental health (MacDonald, 2020; World Health
Organization, 2011).
The performative act of these utterances by society is to control people by applying
outdated ideals of masculinity and femininity. These two attitudes have aided in constructing
the damaging stigmas around mental health and being vulnerable enough to ask for or accept
help for our mental health, leading to the deaths of many New Zealanders (McCool, 2017;
Weber, 2017). For instance, according to the WHO (World Health Organization, 2003):
Communication between health workers and women patients is extremely
authoritarian in many countries, making women’s disclosure of psychological
and emotional distress difficult, and often stigmatized. When women dare to
disclose their problems, many health workers tend to have gender biases which
lead to them to either over-treat or under-treat women.
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Since 2007, men have been consistently 2.5 to 3 times more likely than women to complete
suicide in Aotearoa (Coronial Services of New Zealand, 2020:1). The highest rates of suicide
occur for men in the age groups 25–29 (33.9/100,000) and 30–34 (32.88/100,000) years old,
according to a Coronial Services review. Comparatively the female rates for these age groups
were 9.33/100,000 and 6.57/100,000, respectively (Coronial Services of New Zealand,
2020:2). Interestingly, for women the age brackets her higher suicide rates are different: highest
is 15–19 (14.97/100,000), followed by 80–84 (12.93/100,000), then 20–24 (12.23/100,000)
years old (Coronial Services of New Zealand, 2020:2). This discrepancy highlights the
significant damaging effects that the Kiwi bloke image and the “toughen up” and “she’ll be
right” attitudes have because men feel less able to access the resources available; aiding in
creating Aotearoa’s mental health epidemic. This is further demonstrated in participant
Adriani’s claims that it is not only the historical socio-cultural stigmas surrounding mental
health or the subsequent cultural and gender expectations (for both men and women) that
dissuades individuals from seeking or accepting help but also the inaccessibility and off-
puttingness of the clinical language that is used in inpatient services acting as a further barrier.
She postulates that it may be because people do not understand or trust this politically and
institutionally charged language. Cyra offers a deeper perspective into the significance of the
issue of official/clinical versus non-clinical language, stating that the language found in official
discourse does not represent her experience or those of others with anxiety, depression, or
ADHD in her online communities:
[Online groups are] where I find comfort in the language to explain my
experiences, whereas if I try to google a symptoms list for ADHD, none of [my
symptoms] come up. It’s like “do you get up in situations where you’re expected
to sit still?”, and I’m like, “NO!?!” Of course I wouldn’t, are you kidding me? I
would never! But that’s what, that’s on every check list I’ve had to fill out at the
psychiatrist, it’s on every quiz I’ve done online, it’s – it’s just not at all within
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the community that’s been given that label. And is actually benefiting the most
from talking about their experience and the language they use helps me. Not this
official [discourse]. And just like googling, “the overlap between anxiety and
ADHD” there’s maybe one or a couple of Venn diagrams or whatever, but the
main information about how these things present and the language to use around
that comes from online community.
She claims that this is a common feeling amongst individuals in mental health and disabled
communities. Furthermore, it is the language of the community and how they talk about ADHD
(in her case) that puts her at ease, makes her feel seen, and validates her experience to the extent
that she feels accepted and related to. There is a strong sense of needing to find a place to
belong.
This need to have an experience validated through language and through a similarity of
experience highlights the importance of having a commonality of understanding, which can be
achieved through a shared language and semiotic tools (Danesi, 2019). In the case of language,
this means that there needs to be a collective understanding of words and their socio-cultural
connotations – as occurs in a speech community (Crowley 2003; Bucholtz & Hall 2004;
Ardener 1971; Duranti et al. 2003; Grillo 1989; Keating & Egbert 2004; Kroskrity 2004;
Lambek 2010; Boyer & Yurchak 2010; Morgan 2004; Philips 2004). This is critical because
as a person and their knowledge base grows, so too does their vocabulary and the language
they use to articulate what it is they are feeling. For instance, Sofia, a university student, posts
on social media about her experiences with mental illness, simultaneously promoting official
services. She states that she began to get a grasp on her own anxiety and depression through
diagnosis and using government resources, such as depression.co.nz. Explorations of the
official mental health discourses and engaging with more people online led Sofia to learn about
a variety of mental illnesses:
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I expanded my horizons, if you will, about the different kinds of mental health
issues. Like I’ve started to talk about like BPD [borderline personality disorder],
like my mum, but also like schizophrenia... um and just like different types of
personality disorders, about learning disorders, and I think that’s probably what
changed the most is it wasn’t that my language changed about it, it was that the
knowledge that I knew just got expanded. And so I started to share that
knowledge too.
Similarly, as briefly described above, Cyra’s language began to change as she “found her
people” among ADHD communities. She began adopting the language used in those groups to
articulate her own experience:
I’ve been playing life on “hard mode”, which is a metaphor that I’ve picked up
through online community […]. So the language is like hyper-focus, which is
something I found from [the] community […] the other day I posted something
like “I don’t know if my inability to stop working is perfectionism, internalised
neoliberalism, hyper-focus, or inability to switch tasks, or executive dysfunction
or whatever.” All that language comes from online activism. Disability activism,
ADHD activism, specifically, but also just generally discourse on Twitter, that
is how I got access to a lot of that language.
Cyra’s adaptation of her vocabulary from the dialects of online communities, when talking
about ADHD, signals her inauguration into the ADHD subculture and speech communities.
She now possesses the necessary capital to understand and embody the community’s semiotics
and distinct lexicon. This change in language is not only about the terms with which she
expresses her experience but also represents a shift in mindset. Both Cyra and Adriani note that
the language and position of official clinical discourse is quite different to that of unofficial
online discourses. For instance, Cyra claims that in the official diagnosis criteria for ADHD
and in her experiences with medical professionals, ADHD is diagnosed through the lens of
deficit framing. This may be because in the medicalised understanding, disabilities are
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diagnosed through focusing on the differences that cause “suffering” or “struggles” within
mainstream society. However, Cyra claims that this shouldn’t be the primary focus of ADHD
or disabilities descriptions. While it can be helpful from a diagnostic point of view, the
continued focus on deficit frames disabilities and people with disabilities as “wanting”. Cyra
states that there is so much more to ADHD than the “negatives”; having ADHD is what gives
her excellent pattern-seeking abilities and makes her a good friend in terms of empathy and
emotional capacity. Furthermore, she sees the tendency of individuals with ADHD to hyper-
focus as an ability to fully invest themselves in and be enthusiastic about something – the
language she and the community use conveys the traits of ADHD as positives, rather than as
negatives, as in the diagnostic process. By contrast, the use of negative instead of positive
language in official discourse no doubt adversely affects people with ADHD, as well as those
with other disabilities, because it demonstrates a systemic disabling form of ableism that is
ingrained into every form of discourse and must be unlearnt by those who are disabled. They
need to overcome internalised ableism and the thoughts of “I always knew there was something
wrong with me” that accompany having invisible disabilities. As Cyra phrases it:
I always knew I was fucked up somehow. I always knew I was less than everyone
else around me, and this [diagnosis] is confirmation of that.
This again demonstrates that rather than focusing on the negatives of an impairment, the
question of what special skills and insights people with impairments can offer should be asked.
Conclusion
Language is imbued with social meanings. The type of language one uses changes how
something is seen because, among the many words that say the same thing, those we choose to
use reflect our unconscious social bias. The problem therefore is not the words but the social
meanings they carry; as Cyra puts it, “the problem isn’t actually the word disability but […]
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people seeing it as a negative thing”. The essence of this chapter was to demonstrate how, given
that language is such a significant element in constructing the reality we live in (Ardener, 1971;
Bucholtz & Hall, 2004; Caplan, 2008:13; Morgan, 2004), commonplace and specialist
languages profoundly, and often adversely, construct the worlds of disability and mental illness
in Aotearoa. Language is a powerful tool for conveying understanding, but also for confusing
it. Language and communication are a political field in which our habitus is entangled. While
there are many words and combinations of words that can be used to convey the same idea,
they all have varying social, cultural, and historical meanings and connotations that must be
considered. My interlocutors were profoundly aware of this, having been repeatedly disabled,
and sometimes enabled, by their experiences of local and specialist linguistic practices.
As this suggests, as academics, as engaged citizens, as marginalised people affected by
words and their hidden meanings, we need to be more aware of our language choices and those
of those around us. What ideals and historical, societal, and cultural notions are they reflecting?
Who and what is being prioritised? As stated at the beginning of this chapter, language is the
key to understanding; it is both powerful and dangerous. It sets and maintains social attitudes
and norms, and if there is any hope of progressing mental health and disability discourse then
we must examine the language used and how it is used.
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Chapter Three: Lives Online
Disability and Mental Illness in Digital Spaces
Social media powerfully informs and influences how we communicate (Loh & Lim, 2019).
Digital space and social media, for better or worse, allow us to curate and present a particular
image of ourselves online for others to consume (Barendregt, 2020; Boellstorff, 2015; Miller,
2021; Scott, 2019). Digital media has created new local and global cultures in which
information is exchanged and new identities are formed through a crafting of experience and
participation in online spaces (Cohen & Salazar, 2005; Jayadi & Abduh, 2020).
Social media and digital technologies are complex cultural entities which are neither
solely good nor solely bad; they exist in a state of duality. Using observational and participant
interview data from across several social media platforms – Reddit, Tumblr, Facebook,
Instagram, and YouTube – I show how social media, is a critical tool for communication,
identity formation, and activism for individuals with disabilities and mental illnesses. Such
online spaces are particularly useful for those with disabilities and mental illnesses because
they afford a range of anonymity and the opportunity to be seen as more than their disabilities.
The spaces allow marginalised voices and discussions of taboo topics to be articulated and
noted. However, I also argue that because social media is imbued with social norms, there are
accessibility constraints, limiting participation for some. Furthermore, the curated nature of
social media can be detrimental to youths’ mental health because it presents a filtered version
of people’s lives, supporting the notion that “mental illnesses are the chronic diseases of the
young” (McGorry et al., 2007:S5) because they are the most prominent users and consumers
of social media.
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Disability presentation online
Online expression of disabled identity is complex. Some post with pride, claiming their
disabled status in an “open disclosure approach”; others hide their disabled status, only
disclosing in secure “disabled-only” spaces, enacting a “secure disclosure approach”, or by
private messages, in a “limited disclosure approach” (Furr et al., 2016:1359, 1360, 1362). All
three disclosure types centre on control over when and how disability status is disclosed; the
type of disclosure an individual chooses depends on how they intend to participate online. All
three types of disclosure are wrapped in elements of “impression management” – the choice of
what information is disclosed due to the possibilities of visual anonymity and the general
freedoms of digital spaces (Huang, 2014:417). Those who openly reveal having a disability,
particularly if the disability was the result of an accident, used it to “come out”, accept
themselves, and take control over their disability narratives, pushing back against assumptions
made about their disability (Furr et al., 2016:1360). Both open and secure disclosures offer
disabled individuals the chance to explore and claim their disabled identity, expressing their
expert knowledge and pushing back against ableist assumptions, and often leading to activism
in the form of self-advocacy (Buckingham, 2007:7; Ellis & Kent, 2016:52; Ginsburg,
2020:102-105 Horst & Miller, 2020:105; Rothenbuhler & Coman, 2005; Sweet et al., 2020:5;
Underberg & Zorn, 2013:8).
However, as Ellis and Kent state, “Disability is activated differently online compared
to the analogue world and has uneven effects on different impairments” (2016:4). Some
disabled individuals are capable of “passing” as able-bodied in online space (Boellstorff, 2015;
Ginsburg, 2020:107), allowing them to feel like “everyone else” when they are engaging online
(Sweet et al., 2020:3) – a potentially intoxicating feeling for someone who faces stigma and
social and physical barriers in their everyday lives (Furr et al., 2016; Salzmann-Erikson &
Hiçdurmaz, 2017; Sweet et al., 2020:2). Having a “digital” or “virtual” social identity that is
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not defined by disability, impairment, or bodily appearance – their “actual social identity” –
has a levelling effect, allowing disabled individuals to show and be defined by their
personalities and abilities (Ellis & Kent, 2016; Schüll, 2021:293; Sweet et al., 2020:5) and
offering them a chance at participation in an environment and interactions over which they
have control (Ginsburg, 2020:130). This bodiless participation challenges the social
discrimination towards disabled individuals, often leading to disbelief when they later disclose
their disabled status (p. 130). This levelling effect is also evident in instances of physical
manifestation of mental illness. When someone is in a digital space no one can see the scars of
depression and suicide attempts, and they aren’t beholden to the shame and guilt that others’
lingering glances evoke. Engaging online is perceived as a liberating space which decreases
social judgement based on physical characteristics. This perceived freedom is alluring for
anyone who does not conform to mainstream physical “norms” because it allows them to be
seen beyond their scars or ailments.
In not sharing one’s disability status the toxic practice of “inspiration porn” can also be
avoided (Ellis & Kent, 2016:41, 46; Schüll,