Lecture 3 Required Reading

Introduction: Scale & Significance

• Mental distress/ill-health is widespread in Aotearoa NZ, impacting a significant portion of the population.

  • Prevalence: Approximately one in five ($\frac{1}{5}=20\%$) New Zealanders meet the criteria for a diagnosable mental illness, including addiction, annually. This highlights the extensive reach of mental health challenges across the country.

  • Suicide attempts: An alarming number, estimated at $20\,000$, occur annually, underscoring the severity of mental distress and the urgent need for intervention and support.

  • Severe, enduring conditions like major depression, bipolar disorder, and psychosis affect about one in thirty ($\frac{1}{30}\approx3.3\%$) of the population, indicating a persistent and profound burden on individuals and the healthcare system.

• Disproportionate burden on specific groups, revealing significant inequities:

  • Māori: Reflecting the impact of colonisation and systemic discrimination, one-third ($\frac{1}{3}$) of Māori experience mental distress or addiction.

  • Pacific peoples: A quarter ($\frac{1}{4}$) of Pacific peoples live with mental health conditions, pointing to similar systemic challenges.

  • Prison population: A staggering two-thirds ($\frac{2}{3}$) of individuals in prison face mental health issues, highlighting the intersection of mental health, social deprivation, and criminal justice systems.

• Key premise of chapter: Before “going mad” (taking action), activists and advocates in the mental health space must critically examine three fundamental preliminary questions:

  1. What exactly constitutes mental distress, beyond conventional definitions?

  2. How are current mental health services structured and delivered within New Zealand?

  3. What valuable lessons can be learned from past and present advocacy and activism efforts in this field?

1. Defining & Understanding Mental Distress

1.1 Language, Discourses, & Stigma

• Historical pejoratives such as "loony," "nuts," "porangi" (a Māori term for mad or insane), and "gaga" have historically been used to denigrate and reinforce negative views, leading to profound social ostracism and discrimination against individuals experiencing mental distress.

• The term “Madness” has been deliberately reclaimed by some activists and individuals within the consumer/survivor movement as a term of pride and solidarity. This reclamation challenges the oppressive and pathologizing labels imposed by dominant societal and medical systems.

• Mary O’Hagan, a notable advocate and former Mental Health Commissioner, prefers the term “mental distress” over “severe mental illness.” Her rationale includes:

  • Acknowledging the overwhelming and profound impact this experience can have on an individual's intellect, senses, agency, and relationships, without reducing it solely to a medical pathology.

  • Emphasising the inherent possibility of growth, recovery, meaning-making, and the formation of a positive identity even amidst ongoing challenges.

• The deliberate choice of terms profoundly shapes:

  • Public willingness to fund treatments and support services, as language influences public perception and empathy.

  • The alignment or alienation of affected people, as inclusive language can foster engagement while stigmatising language can drive disempowerment.

  • The acceptance of specific treatment paradigms, influencing the dominant approaches (e.g., biomedical models versus more holistic, psychosocial approaches).

1.2 Mental Health vs Wellbeing

• The concept of “wellbeing” seeks to dismantle the traditional mental/physical health divide, promoting a holistic view that extends beyond merely the absence of disease to encompass a state of overall thriving.

• This shift is closely linked to the Recovery Model, which gained prominence in the 1990s. This model posits that individuals can lead fulfilling and meaningful lives, achieve personal goals, and find purpose, even while experiencing ongoing symptoms or challenges associated with mental distress.

• Critique: Despite its positive intent, the concept of “wellbeing” has faced criticism for occasionally being commodified into a “wellbeing industry” that often focuses on individualistic solutions (e.g., apps, mindfulness courses) and for becoming a superficial policy buzzword, diluting its true transformative potential while failing to address systemic issues.

1.3 Māori & Cross-Cultural Perspectives

• Te Ao Māori, the Māori worldview, offers unique perspectives, such as the concept of matakite. This recognises experiences often labelled as voices or visions not as pathology but sometimes as ancestral warnings, spiritual insights, or signs of heightened intuition and connection to the spiritual realm.

• Holistic health models prevalent in indigenous and collectivist cultures, including Māori frameworks like Te Whare Tapa Whā, integrate the four dimensions of wairua (spirit), hinengaro (mind), tinana (body), and whenua (land/connection to place and community). This contrasts sharply with most Western biomedical approaches.

• Indigenous scholars consistently highlight the pervasive impact of colonisation, intergenerational trauma, racism, and inherent cultural bias embedded within Western diagnostic manuals like the DSM (Diagnostic and Statistical Manual of Mental Disorders) and ICD (International Classification of Diseases), arguing that these systems often pathologise culturally normative behaviours or fail to capture the complexities of non-Western experiences.

1.4 Continuum & Diagnostic Debates

• Mental distress is increasingly viewed as a spectrum or continuum, ranging from everyday emotional reactions and transient stress responses to chronic, diagnosable conditions requiring intensive intervention.

• Many individuals within the critical psychiatry movement and survivor community reject the term “mental disorder” entirely, arguing that it implicitly promotes a brain disease paradigm that oversimplifies complex human experiences and risks reducing suffering to a biological malfunction.

• Yet, diagnoses can serve important functions:

  • Validate suffering: Providing a recognised framework can validate an individual's experience, demonstrating that their distress is real and not merely imagined.

  • Enable access to services/insurance: Formal diagnoses are often prerequisites for accessing public mental health services, disability support, insurance coverage, and specific treatments.

• The DSM-5 and ICD-11, while widely used, have been subject to intense criticism for:

  • Pharmaceutical influence: Concerns persist regarding the influence of pharmaceutical companies on the expansion of diagnostic categories and the pathologising of normal human experiences, potentially leading to over-medication.

  • Expanding categories: The manuals have been criticised for continually expanding diagnostic categories (e.g., including “caffeine intoxication disorder” or defining normal grief lasting less than two weeks as potentially qualifying for major depressive disorder), contributing to a medicalisation of everyday life.

  • Past pathologising of homosexuality: Historically, homosexuality was classified as a mental disorder in the DSM until $1973$ and in the ICD until $1992$, demonstrating how diagnostic systems can reflect and enforce social prejudices rather than objective science.

• The Antipsychiatry/critical psychiatry movement, emerging in the 1960s, continues to contest the biomedical dominance in understanding and treating mental distress, advocating for psychosocial, systemic, and human rights-based approaches.

• Current “biopsychosocial” and “stress-vulnerability” models attempt to offer a more nuanced understanding, recognising the interplay of cumulative psychosocial stressors, epigenetics (how environment affects gene expression), and the complex interaction between biological predispositions and environmental factors. However, critics still contend these models often implicitly privilege genetics and biological explanations over social determinants.

1.5 Contributing Factors (Multi-Level)

• Trauma: Experiences such as childhood abuse, neglect, and bullying are strongly correlated with the development of complex mental health conditions, including PTSD (Post-Traumatic Stress Disorder) and psychosis, often leading to long-lasting neurological and psychological impacts.

• Adult adversity: The impact of later-life challenges (e.g., job loss, bereavement, chronic illness) is highly dependent on an individual’s interpretation of events, the availability of strong social support networks, and their perceived sense of power or powerlessness in navigating these difficult circumstances.

• Poverty & inequality: These factors are profound drivers of mental distress, creating concentrated risk clusters (e.g., exposure to violence, poor housing, food insecurity). Research also indicates an increase in anxiety and depression rates in affluent societies with high levels of income inequality, suggesting that relative deprivation and social comparison play a significant role.

• Employment & family instability: Major life transitions and chronic instability, such as middle-age job loss, persistent inter-parental conflict during adolescence, or elder isolation, can significantly increase vulnerability to mental health issues.

• Global/structural: Broader societal and geopolitical factors like war, the ongoing legacies of colonisation, systemic racism, and climate change contribute significantly to collective and individual trauma and distress, particularly impacting marginalised communities.

• Lifestyle: Various lifestyle factors can either contribute to or protect against mental distress:

  • Substance use: While sometimes used as a coping mechanism, substance abuse can exacerbate or directly cause mental health problems.

  • Social media: Excessive or negative social media engagement is linked to increased anxiety, depression, and body image issues.

  • Religion/spirituality: For many, spiritual practices and community offer protective factors, fostering resilience and meaning. However, certain religious contexts can also be harmful, contributing to guilt, fear, or social isolation.

2. Understanding NZ Mental Health Services

2.1 Current System Architecture

• The majority of mental health services in New Zealand are primarily taxpayer-funded, delivered through the public health system. Private options also exist, including private counselling, some general practitioner (GP) care, and private psychiatric services.

• Key entities involved in the provision and oversight of mental health services include:

  • Ministry of Health: Historically responsible for funding and monitoring the performance of 20 District Health Boards (DHBs). This function is now transitioning to Te Whatu Ora (Health New Zealand) and Te Aka Whai Ora (Māori Health Authority) as part of a significant health system reform aimed at greater centralisation and equity.

  • DHBs (now Te Whatu Ora): These entities contract and manage a range of services, including public hospitals (psychiatric wards), community mental health teams (e.g., crisis resolution teams, assertive community treatment), Non-Governmental Organisations (NGOs) specializing in mental health support, and Primary Health Organisations (PHOs) which integrate mental health support within primary care settings.

  • Parallel streams: In recognition of diverse needs and cultural preferences, the system supports consumer-run services (led and delivered by people with lived experience) and “for Māori by Māori” kaupapa services, which are culturally aligned and often holistic in their approach.

  • Regulatory & rights bodies: Several bodies are in place to ensure patient safety, protect rights, and maintain professional standards:

  – Health Practitioner Competence Assurance Act: Regulates health professionals, ensuring they meet competency standards.

  – Code of Health & Disability Consumer Rights: Outlines the rights of health and disability service consumers, including the right to respect, dignity, and informed consent.

  – Mental Health (Compulsory Assessment and Treatment) Act 1992: Governs the legal framework for compulsory assessment and treatment of individuals deemed to be a danger to themselves or others due to mental disorder.

  – Mental Health & Wellbeing Commission, Health and Disability Commissioner (HDC), and district inspectors: These bodies provide oversight, investigate complaints, and advocate for systemic improvements in mental health care and rights protection.

2.2 Political–Economic Shifts (Last $30+$ Years)

• Late 1980s – 1990s: Neoliberal Managerialism

  • This era saw the widespread closure of large psychiatric hospitals (often referred to as “deinstitutionalisation”), moving care into community settings, though often without adequate resourcing in the community.

  • Marketisation policies were introduced, including a purchaser–provider split where funding bodies (purchasers) contracted services from providers (e.g., NGOs, private companies). This fostered competitive contracting and redefined individuals receiving services as “consumers” rather than patients.

  • Welfare benefit tightening occurred, pushing more people into precarity, which often exacerbated mental health challenges.

• Consumer / Survivor Movement rises concurrently: Alongside neoliberal reforms, this movement gained significant momentum, demanding greater voice, respect for lived experience, the creation of peer roles within services (e.g., peer support workers), and a stronger focus on personal recovery.

• Kaupapa Māori Services: These culturally specific services were pioneered in the former psychiatric hospitals of Tokanui and Carrington, offering services based on Māori values and healing practices. Their growth was rapid: from 23 NGOs in 1995 to triple that number by 1998, demonstrating the community's demand for culturally appropriate care.

• 2000s Labour Government: This period saw increased funding for mental health, the reinstatement of District Health Boards (DHBs) with a focus on local accountability, and a strengthening of the Mental Health Commission's advocacy role.

• 2008-2017 National Government: This period was characterized by cost-containment measures and a focus on “social investment” (targeting funding towards interventions with measurable social returns). Proposed social bonds (private investment in social programs with payouts tied to outcomes) and rationalisation of PHOs were explored, reflecting a market-oriented approach to social services.

• 2017- (6th Labour Government): A significant shift occurred with the undertaking of the comprehensive He Ara Oranga inquiry into mental health and addiction, which gathered extensive public feedback. This led to the re-establishment of the Mental Health & Wellbeing Commission, the introduction of the “Wellbeing Budget” (prioritising wellbeing outcomes alongside economic ones), increased frontline pay for mental health workers, and significant capital investment for new mental health units and expanding primary care mental health services.

2.3 Systemic Critiques

• Fragmentation & complexity: The current system is often criticized for its multitude of entry points (GP, emergency department, community mental health teams, NGOs), leading to poor inter-service coordination, referral pathways, and continuity of care for individuals navigating complex needs.

• Contracting issues:

  • Increased administrative and marketing costs associated with competitive tendering often favour large, corporatised NGOs that have the resources to manage complex bids, potentially disadvantaging smaller, grassroots organisations.

  • Small peer-led and Māori-led services, despite their effectiveness and cultural relevance, frequently remain under-resourced and struggle to compete in this environment.

  • “Commercial sensitivity” clauses in contracts limit transparency, creating barriers to public oversight and accountability through mechanisms like the Official Information Act (OIA).

• Workforce:

  • A 2014 survey indicated that support workers constitute approximately $52\%$ of the mental health workforce, and $73\%$ of NGO staff are in non-clinical roles. While crucial, this highlights a potential imbalance in specialized clinical support.

  • The sector experiences high staff turnover and relatively low pay, contributing to a professional flight towards the higher-paying and less demanding private sector, exacerbating workforce shortages in public services.

• KPI obsession: A pervasive focus on short-term, quantifiable outputs and key performance indicators (KPIs) often trumps the more nuanced, relational, and long-term aspects crucial for genuine recovery and wellbeing outcomes.

• Recovery & resilience rhetoric co-opted: The valuable concepts of recovery and resilience are sometimes criticized for being co-opted by policy-makers to justify increased individual responsibility for mental health and to push for workforce participation, potentially deflecting attention from systemic failures and social determinants of distress.

• Employment programmes: Initiatives like Individual Placement and Support (IPS) and social enterprises aim to support employment but often hinge on specific subsidies and require significant stigma reduction efforts. Critically, these programmes can inadvertently marginalise high-needs clients who face complex barriers to employment.

• For some, the promise of neoliberal “choices” (e.g., consumer choice in a marketised system) ultimately shrinks to stark choices between homelessness, incarceration, or suicide, reflecting the profound failures of the system to provide adequate safety nets and support for those most vulnerable.

3. Lessons from Advocacy & Activism

3.1 Historical Timeline (NZ)

• 1970s: The emergence of family advocacy groups, exemplified by efforts like the NZ Telethon, which raised public awareness and funds, and the establishment of the Mental Health Foundation in 1977, signalling a more organised approach to advocacy and public education.

• 1980s: This decade saw the continuation of the closure of large mental institutions (deinstitutionalisation). Concurrently, the rise of the Aotearoa Network of Psychiatric Survivors (ANOPS) marked a crucial shift towards consumer-led advocacy, giving voice to those with lived experience.

• 1990s: The launch of the high-profile Like Minds, Like Mine anti-stigma campaign aimed to challenge discrimination and promote understanding of mental illness. This period also saw the widespread diffusion of the recovery model into service delivery, emphasizing hope and personal empowerment.

• 2000: Mary O’Hagan, a prominent mental health survivor and advocate, was appointed as the Mental Health Commissioner, a landmark achievement that brought lived experience perspectives to a high level of policy influence.

• Ongoing: The landscape of mental health advocacy in NZ continues to be vibrant, characterized by the sustained growth and influence of consumer, peer, and tangata whaiora (people seeking wellness, a Māori term for mental health service users) networks. These networks encompass various approaches, including direct-action and abolitionist factions that push for radical systemic change.

3.2 Survivor Perspectives Spectrum

• Reformists: This faction of the survivor movement focuses on working within the existing system to improve mainstream services. Their aim is to enhance accessibility, quality, and responsiveness of public mental health care through policy advocacy and collaboration.

• Abolitionists: In contrast, abolitionists advocate for the complete dismantling of coercive psychiatry and traditional psychiatric institutions. They seek to create truly bottom-up, peer-led, and community-based alternatives that operate outside conventional medical models.

• Challenges inside sector: The survivor movement faces internal challenges, including concerns about tokenism (superficial inclusion of lived experience without genuine power), issues of representativeness (who speaks for the diverse experiences within the community), and conflicting agendas among different groups and priorities.

3.3 Case Study – People’s Mental Health Report (PMHR $2017$)

• Initiated by ActionStation, a progressive digital campaigning platform, in collaboration with prominent columnist and mental health advocate Kyle MacDonald. This initiative was a direct response to significant mental health funding cuts in the Canterbury region, sparking widespread public concern.

• Method:

  • Over 500 online submissions were collected from a broad range of stakeholders, including individuals with lived experience of mental distress, their whānau (families), and frontline mental health staff.

  • An anonymous posting option ensured that individuals felt safe to share sensitive experiences without fear of reprisal. Follow-up interviews were conducted for a smaller subset of participants to gain greater depth and context to their stories.

  • The collected data underwent a mixed qualitative-quantitative analysis to identify key themes and trends. Legal vetting was conducted to ensure compliance with coroner suppressions and settlement agreements, particularly concerning sensitive personal narratives.

• Ethical practices: The report prioritized robust ethical considerations, including ensuring informed consent from all participants; creating safe storytelling environments to minimize re-traumatisation; and employing inclusive formatting (e.g., using a large sans-serif font for readability and accessibility).

• Findings: The report's findings painted a stark picture of systemic under-resourcing across the mental health sector, highlighted pervasive access delays for services, and documented numerous traumatic experiences reported by individuals within the public mental health system.

• Impact: The PMHR had a significant and demonstrable impact, directly influencing the Mental Health Commissioner’s 2018 report and subsequently informing the recommendations of the landmark He Ara Oranga inquiry. It strongly demonstrated the power and effectiveness of narrative-based online activism in mobilizing public opinion and influencing policy change.

3.4 Storytelling – Opportunities & Risks

• Personal narratives serve as a powerful counter to the dominant biomedical framing of mental distress, offering alternative perspectives that highlight processes of survival, resilience, and the search for personal meaning beyond diagnostic labels.

• Storytelling modes align naturally with and support Māori oral traditions, fostering culturally resonant ways of sharing experiences and knowledge. They are highly effective in facilitating public empathy, allowing audiences to connect with and understand complex experiences on a human level.

• However, personal stories must be contextualised socio-politically (“outsight”) to avoid the risk of individualisation—that is, the tendency to reduce systemic problems to individual failings or unique personal struggles, thereby overlooking the structural drivers of distress.

• Online campaigns, using digital platforms for storytelling, can reach wide and diverse audiences, enabling rapid dissemination of messages and mobilization. However, studies suggest they may have limited efficacy for deep stigma reduction without accompanying face-to-face connection and sustained, nuanced dialogue.

Conclusion: Integrating Insights for Future Action

• The ongoing evolution of language and paradigm shifts in how mental distress is defined underscores the critical importance for activism to continuously question underlying assumptions, ensuring that evolving terminology reflects a more humane and holistic understanding.

• Achieving truly holistic, culturally grounded care requires not just incremental adjustments but fundamental structural change and adequate, sustained funding that moves beyond the limitations of market logic and competitive contracting.

• There is a pressing need for collective consensus on the state’s fundamental role in ensuring mental health, particularly in preventing distress by proactively addressing root causes such as poverty and inequality.

• Future activists and advocates require a dual focus to achieve comprehensive change:

  • Advocating for service reform: This includes ensuring equitable access, improving the quality of care, and robustly protecting the rights of individuals within the mental health system.

  • Addressing root socio-economic causes: Simultaneously, advocacy must tackle the underlying societal determinants of mental distress, such as poverty, discrimination, inadequate housing, and lack of opportunities.

• Building “outsight” (a systemic, socio-political understanding of mental distress) alongside personal “insight” (lived experience and self-understanding) is crucial. This integrated approach fosters informed, ethical, and truly transformative advocacy that aims for deep, sustainable change in mental health and wellbeing.