Toi Ora: Making the arts accessible

tishyartby Tricia Hall

This article will appear in Fightback’s upcoming September issue on Accessibility. To support our work, consider subscribing to our e-publication ($NZ20 annually) or print magazine ($NZ60 annually). You can subscribe with PayPal or credit card here.

When we talk about accessibility too often the discussion ends with the basics of food and shelter. But to be a fully accessible society for all we need to consider people in a holistic manner. Providing for physical emotional and spiritual needs can mean different things to different people, and how easily people can get these needs met also varies.

For those who have experienced Mental Health or other issues, accessing something like the Arts comes well down the priority list after shelter, food, medications and other treatments, transportation – all things that cost money in our society. However, it is precisely access to arts and community that people find allows them to live meaningful and fulfilling lives. We need to recognise the importance of having access to community – whether that is arts, sports, spiritual or something else, and that this is a fundamental human right for all.

For some years I have been a part of a community called Toi Ora, both as an artist, tutor and part of the strategic board. Toi Ora is an art space in central Auckland which provides classes across the spectrum of arts for people who have experienced Mental Health or substance abuse issues.

Toi Ora was set up in 1995 by a group of artists with lived experience of Mental Health issues who recognized that an important part of living well was finding something you liked doing and a community to support you to do it. Unlike so much of the health system, particularly those parts dealing with Mental Health, Toi Ora is not about what is wrong in people’s lives, but rather what is right. People are artists, musicians, writers – not whatever label society or the system may have placed upon them.

How Toi Ora works

Toi Ora provides a schedule of regular classes during term times in the visual arts, drama, music, creative writing and more. Members are encouraged to be part of running the studio in volunteer roles. The staff at Toi Ora have either their own personal experiences of unwellness, extensive training in mental health and/or the arts, or both. All tutors are practicing artists, writers or musicians.

Members do not pay to join Toi Ora, and professional-quality materials are provided. People who join are signed up for one or more classes and fill in an enrolment form for each term. When they first join, a staff person will give them an orientation to ensure they understand what is expected of them, including what is appropriate behavior whilst using Toi Ora services.

Toi Ora’s membership criteria are personal experience of mental unwellness, which means a diversity of members both with long-term illnesses, and those who have recently had their first episode of unwellness. Members’ artistic abilities also vary, and Toi Ora is able to cater for a range of levels from absolute beginners to established artists.

There is some provision for space for independent projects to take place alongside classes, and there is also usually at least one artist in residence supported by the Toi Ora Trust. When Toi Ora moved to its current premises in 2009, we acquired gallery space in which to showcase our members’ artwork with regular exhibitions.

A large part of Toi Ora’s funding comes from the Auckland District Health Board, which only covers the central part of Auckland – so we are not able to admit new members who live in the western or southern parts of the Super-City. The service has regular audits to ensure that the DHB is getting “value for money”.

Other sources of funding have come through applying for philanthropic or other grants, usually for specific projects including the Express Yourself youth programme, October Gig, events promoting Mental Health Awareness Week, The Outsider Art Fair and more. Some of these have been organized in conjunction with groups or organisations such as Circability, Mapura studio, Mental Health Foundation, Clubhouse, Studio One Toi Tū and others within both Arts and Health fields.

Safety and accessibility

It can sometimes be challenging to cater for the varied needs and abilities of members in such a way that Toi Ora remains accessible for all. Alongside Mental unwellness there is an element of risk, and Toi Ora has strong policy guidelines for managing this.

All members sign an agreement when they first join to adhere to these guidelines, and if staff notice someone showing signs of potential unwellness they will speak to that member to encourage them to take appropriate steps to look after themselves. Toi Ora is a supportive community, and while not specifically therapy oriented, sometimes people may find that emotional triggers may occur during their time in the studio or classes. When this happens, either peers or staff will usually support the distressed person, and if necessary involve other support people if appropriate.

Tricia’s story

When I first came to Toi Ora around 2001, I was coming out of a period of ill health that had really shaken my confidence. I had dropped out of university and moved back in with my parents. Coming to a couple of classes a week at Toi Ora provided the beginnings of routine, a place to be, and understanding people to connect with.

Quite early in my time at Toi Ora I volunteered to be a member of the Trust Board. Part of the initial deed when Toi Ora was first set up included that the Board should have a percentage of members who had personal lived experience of Mental Health issues and were current members of Toi Ora. I was a part of the Board for several years, including as Chairperson until I stepped down as part of my maternity leave.

When one of the long-term tutors left, I was offered the role of art tutor for the beginners’ painting class, initially as a shared position. I have also filled in tutoring other classes such as Mosaics, Printmaking and Creative Writing and worked as a tutor with groups of young people across various arts as part of the Express Yourself programme (this is not currently running anymore due to lack of available funding)

Over the years I have also has support and opportunities from Toi Ora in various forms. I have been part of group exhibitions and performances both at Toi Ora and other galleries/venues and was able to put together a solo exhibition in 2011. I have also been supported as a delegate to conferences, and supported in learning New Zealand Sign Language, as Toi Ora extended a welcome to the Deaf community with specific workshops and exhibitions.

When my now feisty two-year-old daughter was born, I took maternity leave as a tutor for a year, but during that time stayed in contact with the studio. I even attended a few classes with my baby in tow, recognizing the importance for me of remaining connected with other adults and my own interests as I navigated to first year of my daughter’s life and struggled with mild post-natal depression. I have since returned to tutoring one day a week.

During 2017 I also had the privilege of being a participant on the Be Leadership programme, a leadership programme set over 10 months including some residential components. Participants develop new frames of thinking around leadership through having new and challenging conversations with each other and prominent leaders throughout New Zealand. I was fortunate to be able to attend the programme with my baby (who was 4 months old at the start of the programme) and to be a part of discussions around accessibility for all.

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In defence of meds (and neurochemistry): Notes from a bipolar socialist

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by Ani White

This article will appear in Fightback’s upcoming September issue on Accessibility. To support our work, consider subscribing to our e-publication ($NZ20 annually) or print magazine ($NZ60 annually). You can subscribe with PayPal or credit card here.

Content warning: This article discusses a range of mental health conditions, including bipolar and suicidality.

Bipolar (definition): A mental condition characterised by depression and mania.

Mania (definition): An abnormally elevated mood state characterized by such symptoms as inappropriate elation, increased irritability, severe insomnia, grandiose notions, increased speed and/or volume of speech, disconnected and racing thoughts, increased sexual desire, markedly increased energy and activity level, poor judgment, and inappropriate social behavior.1

“…depression isn’t about brain chemistry at all, it’s about social context.” This turn of phrase, coming from a friend over dinner, set off immediate alarm bells. At all? Isn’t that simplistic? Surely brain chemistry and social context interact? My friend was recommending some fellow published in The Guardian, so while arguing back I agreed to look into it.

In the article2, author Johann Hari does actually acknowledge briefly that brain chemistry is a factor, and that medication can help, but strongly emphasises that improving peoples’ social conditions is necessary to alleviate depression and anxiety. I agree with all of this. High rates of mental distress in our society result from a brutally exploitative system that alienates us from ourselves, and a kinder (socialist!) society would result in better mental health outcomes. My point here isn’t about Hari, the ethics of his behaviour3, or the details of his work (I should admit upfront to not having reading his book, only the article). It’s about the popularity of his work, and the dangers associated with a simplified interpretation of it. I should also acknowledge that friends of mine with bipolar and borderline personality disorder find Hari’s work useful, so this is not intended to speak for all bipolar people.

However, I personally believe that what Hari says is most accurate and pertinent for people suffering from situational depression and anxiety. We should be careful about extending Hari’s arguments too far. They should not be blindly mapped onto all mental conditions. And I don’t accept that all mental illness is socially determined – Hari does not argue this, but it’s a common leftist outlook that Hari might appear superficially to confirm.

I’m bipolar (see byline for definition). One of my uncles experienced schizophrenia and committed suicide, another uncle experiences bipolar, my sister has experienced hypomania and depression. The evidence seems clear that bipolar is heritable,4 and given my family history it seems pretty likely my bipolar is inherited. This doesn’t mean social context is irrelevant: changes in my life have helped trigger my manic episodes for example. However, the phrase “depression isn’t about brain chemistry at all” isn’t useful for my situation, including my depressed periods. My brain does chemically have a greater tendency towards ‘imbalances’ than other brains, and my treatment has to acknowledge that. It’s common that bipolar is initially misdiagnosed as simply depression/anxiety, leading to treatment that can make the situation worse: for example, antidepressants can set off mania, as they did in my case. Our brains are simply not like other brains (this is not distinct to bipolar people – patterns in brain chemistry vary widely).

My bipolar diagnosis made a big difference to recovery, enabling a more appropriate treatment plan (including appropriate meds, talk therapy, and broader changes in my life). After 28 years with undiagnosed bipolar, the 2 years since my diagnosis have been marked by significant recovery. Over that time, I’ve also found that while many people are aware of how depression works, mania (again, see byline) is not widely understood.

Mental health advocates around the world have launched a number of prominent depression awareness campaigns. Depression is a common issue: about 15% of Australians will suffer from depression, compared to about 1.8% experiencing bipolar. With overstretched and underfunded mental health systems, there are inestimable challenges facing mental health advocates, and raising awareness of the most common mental health disorders does make sense as a priority. However, people with rarer mental health conditions exist, and our conditions remain widely misunderstood.

Reactions to Kanye West are a case in point (hear me out). The recent announcement of his bipolar diagnosis did not surprise me at all. What’s notable, unusual about Kanye’s manic episodes is that they’re broadcast across the world. Every manic person embarrasses themselves, most do not do it on the evening news. Kanye’s episodes are otherwise quite typical of mania: delusions of grandeur, ranting, a general disconnection from the social body. I do not mean to excuse everything Kanye has said, particularly his endorsement of the alt right. Kanye has millions of dollars, not something most bipolar people can claim, so this probably factors into some of the disconnected ideas he expresses. Bipolar people must take responsibility; I myself have fucked up, behaving inappropriately while manic. Manic people may lack filters, but the ideas we express do come from our brains.

However, it seems to me that many who would not mock a celebrity’s depression will mock a celebrity’s manic behaviour. In a mental health support group online, I saw a comment dismissing Kanye as on the ‘delusion train.’ It struck me as unlikely that anyone in that space would dismiss someone on the ‘depression train’ (even a multi-millionaire such as Robin Williams).

In my experience, even those who do not mock manic delusions understandably find them confusing. This is not just because the ideas manic people express are confusing, though they often are; it’s also that there is no script for dealing with these episodes the way there is for depression.

During a video posted on Facebook, Johann Hari repeatedly emphasised that “you’re not crazy.” This is affirming for many. However, I prefer to acknowledge that manic episodes are crazy. They involve delusions, incoherence, reckless behaviour. For some of us, it may be more useful to acknowledge that insanity is part of the spectrum of human behaviour than to imply that nobody is crazy. Perhaps talk of ‘insanity’ is stigmatising, and I don’t insist everyone use it; my point is more that we need to be frank about the realities of mania.

Brains will always be diverse. This may manifest as mood imbalances. Moods and perceptions would not all be stable and identical under socialism. It may be that periods of lower energy and mood – what we call depression – would be accepted, not punished as ‘unproductive’, a punitive approach that only exacerbates depressive spirals. In other words, yes, mental distress would be alleviated, likely leading to lower rates of depression and anxiety. But this would not mean the eradication of complex, varied, sometimes ‘imbalanced’ brains – and meds would likely continue to help.

Perhaps a defence of neurochemistry and medication is unnecessary; meds continue to be the mental health system’s first port of call. However, my concern is that those who rightly call attention to social context do not throw the baby out with the bathwater.

Marxism and mental health (audio)

Mental HealthFightback’s Polly Peek recently spoke on the topic of Marxism and mental health in Christchurch.

Capitalism functions in such a way that people impacted by mental illness are often lacking the health services needed, and face discrimination in employment and stigmatisation in wider society.

Downloadable MP3 available here

Putting the care into aged care

Upper Hutt aged care picket2 1.3.12

Grant Brookes, Health First candidate for Capital & Coast District Health Board

Aged care is in crisis. It’s headline news. In August, pay cuts of up to $100 a week for staff at Ranfurly Rest Home and Hospital in Auckland were the lead story on Campbell Live (When your employer proposes a pay cut). In early September, an inquiry into shocking neglect of elderly residents at Wellington’s Malvina Major Home was front page news in the Dominion Post (Rest Home failed all its residents, Ministry says)

Although the mainstream media reported these as isolated issues, in reality they are the tip of an iceberg.

The systemic crisis has been clear for at least the last three years. In 2010, opposition MPs Sue Kedgley and Winnie Laban led an alternative inquiry into aged care, after National Party members of the health select committee blocked a formal parliamentary inquiry. (October 2010 Aged Care Report)

And it was confirmed last December by the Caring Counts report, published by the Human Rights Commission. This found that the predominantly female workforce in aged care – many of whom are new migrants – and the elderly people they look after are undervalued and discriminated against. (Report of the Inquiry into the Aged Care Workforce)

The situation for support workers, often working alone to help elderly people in their homes, is largely invisible. But it’s probably even worse.

Aged care in New Zealand is suffering the ravages of neoliberal capitalism. Today’s crisis flows from the privatisation and deregulation of the sector over the last 25 years.

Up until the 1980s, rest homes were mainly run by charities. But by 2010, over two thirds of residential facilities were privately owned and run for profit.

The industry is dominated by multinational corporations, banks and private equity firms. A third of the beds nationwide are provided by six large chains.

One of them is Ryman Healthcare. Ryman owns the Malvina Major Home, of Dominion Post fame, where a confused elderly woman was repeatedly left lying in her own faeces.

In the 1980s and 1990s, there were legal minimum staffing levels for homes like this. But in 2002, deregulation removed minimum staffing requirements.

Ryman Healthcare receives $800 million a year from the taxpayer. How much of this goes straight into the pockets of investors is unknown, as the company is not obliged to account for this public money.

It is known, however, that on night shifts they employ just one or two nurses to look after the 200 residents at Malvina Major. Is it any wonder that residents are sometimes neglected?

The aged care crisis has been the focus of a decade of campaigning by the three unions representing in the sector – the Nurses Organisation, the Service & Food Workers Union Nga Ringa Tota and the PSA.

But the proportion of workers who belong to a union, while higher than the private sector average, is much lower than in the public health system.

In 2006, union density across aged care averaged 20 percent. This has weakened the ability of workers use industrial action to press for change.

Despite this, aged care has featured prominently in strike statistics in recent years, winning modest improvements (or limiting the deterioration) for workers and residents in some places.

But given the relative industrial weakness, the unions have also turned to political campaigning. Because District Health Boards administer the funding contracts with aged care providers, elected members of the DHBs do have some influence.

The PSA is lobbying DHB candidates to commit to pay justice for contracted out home support workers, including equal pay with those directly employed by the DHBs (Time to Care).

The SFWU is calling on DHB candidates to support its Living Wage campaign (www.livingwage.org.nz), and its minimum hourly rate of $18.40.

And the Nurses Organisation is asking candidates to sign a pledge, including commitments to the Living Wage and equal pay for nurses and caregivers in aged care compared with their DHB counterparts (DHB Elections 2013, NZNO).

Standing as a candidate for Capital & Coast District Health Board, I am proud to continue my years of involvement in the battle for aged care by supporting these union campaigns.

Politics and the mental health consumer movement

changing minds

Polly Peek

As a socialist and mental health consumer, I was recently excited to discover ‘The C Word,’ a blog on the Changing Minds website.

Changing Minds is a consumer organisation based in Auckland. Engaging in systemic advocacy and activism, the group acts as a network of mutual support for people who have used mental health services and want to be involved in improving the health system.

What’s exciting about this organisation and the information they’re providing for mental health consumers, is that they seem to be taking an openly political approach to their work, recognising the impact our material conditions have on all other aspects of our lives – including health and wellbeing.

The first C word examined in the changing minds blog is Capitalism.

“Capitalism” the author states, “is bad for my health. And in my opinion, it’s bad for everyone’s health”. Issues related to low wages and systemic unemployment are raised, and the inability to maintain a work-life balance within the present economic system is related to the people’s needs for rest, particularly where someone is managing mental distress.

The article goes on to discuss how the polarities of full-time or over-employment and unemployment are legitimised through an ideological equation of full-time work with full citizenship – a status unattainable to many mental health consumers due to the demanding nature of work under capitalism.

It is interesting to consider this blog post in relation to the politics of the wider mental health consumer movement. [Read more…]

A radical mental health consumer’s thoughts on the welfare reforms

Welfare reform will have a negative effect on those experiencing mental illness or distress

Welfare reform will have a negative effect on those experiencing mental illness or distress

Polly Peek

This month, the Mental Health Foundation is organising activities and events for Mental Health Awareness Week. For the last few years, the theme of awareness week has been based on the ‘Five Winning Ways to Wellbeing’, the essence of a number of studies into what makes people (whether labelled with a mental illness or not) well and happy. From the research, five key aspects of wellness have been identified, namely, connecting with others – family or friends, being active, keeping learning, taking notice of the small things around us, and giving to others.

For people living with the assistance of welfare benefits, ‘giving’, this important aspect of wellness is considerably restricted. Not only do most people living on state assistance receive less than is adequate to look after themselves, let alone have surplus to give to charity or lend to friends in need, but they are also excluded from offering their time voluntarily to charitable organisations or community groups as Work and Income policy sees this as potentially interfering with their ability to find work, or, if they are receiving a Sickness or Invalids benefit, proof of their ability to be in paid employment. I spoke with one such person a few days ago who has received support for a long period of time due to disability and she expressed sadness and frustration that a person she knows in a similar situation is having to hide the fact that they are helping out with a local charity from WINZ.

Recently, the government has revealed welfare reforms which will have a further dire impact on people’s mental health and that of mental health consumers in particular. These follow an initial wave of welfare reforms which have made changes to assistance available to youth in particular. Announced changes to welfare policy include completely cancelling assistance for three months for people who are considered to have turned down a suitable job, halving assistance for people whose children are not enrolled with a GP or early childcare centre, and cutting assistance for people who fail or refuse a drug test at a new job, or have outstanding arrest warrants. [Read more…]

The dialectical relationship between work and mental health – Part 4

This is the final instalment of a four-part series by Polly Peek

From a Marxist perspective, the low pay rates of jobs with low psycho-social quality is related to the concept of exploitation – the necessity for wages to be worth less than the value created by the worker’s labour, in order to continue to make a profit. A further component of employment’s potential detriment to mental health, well-being and recovery which is not covered in the research carried out by Butterworth and other (see part 3), is workers’ experiences of alienation. In his book which looks at work and sickness, Paul Bellaby discusses the way in which jobs can accentuate certain qualities of the body and mind, but can also depreciate others. A participant from one of the qualitative interviews quoted in this book talks about alienation with great clarity, as well as its impact on well-being as a worker undertaking solitary tasks.

You hardly talk to anyone. You have no idea what is happening around you – and you lose touch with what is happening in the world. After a while it gets so that you have no conversation, and when you go out socially you do not know what to say – eventually you lose all your self-confidence. (Bellaby) [Read more…]

The dialectical relationship between work and mental health: part 3

This article is part three in a series of articles by Polly Peek. The first two parts can be read in the January and February issues of The Spark or online here (part 1) and here (part 2)

The low employment rates for people experiencing mental ill health can be attributed to a combination of individual discrimination and, more predominantly, systemic barriers. Research into occupational perspectives on recovery by Mary Kelly, Scott Lamont and Scott Brunero, highlighted the experiences of a mental health consumer who was forced to take early retirement by his employers upon disclosure that he was seeing a psychiatrist. This kind of anecdotal evidence may give perspective to the question of whether mental ill health leads to unemployment, or loss of employment erodes resiliency with the suggestion that where illness leads to unemployment, it may, in many cases not result exclusively from symptom recovery but external issues such as inter-personal discrimination.

I would argue that in these situations individual discrimination is a result of a wider systemic issue that is the bottom-line focus of businesses. This priority is evident in research such as that produced by London School of Economics and Political Science researchers which outlines the 10 billion pound annual loss to businesses as a result of “failure of employees to fulfil their contractual hours” while absent from work sick. Extending on this, the authors cite the increasing presence of mental illness in the global burden of disease as a reason for some people being absent from work up to three times as often as their colleagues. While similar finding have featured in New Zealand research such as that undertaken by Southern Cross, and cited in the NZ Herald in 2009, more attention to the abilities of employers to reduce the impact of mental illness on workplace performance could improve employment opportunities for people with mental illness in the absence of a larger societal change away from prioritising profit. [Read more…]

The Dialectical Relationship between Work and Mental Health: part 2

This article is the second of a four-part series by Polly Peek. The first part can be read online here or in the December-January issue of The Spark. ‘Consumer’ in this article refers to a person who currently or has previously used psychiatric services. ‘Bourdieuian’ refers to the theories developed by French Sociologist Piere Bourdieu and  ‘taangatawhaiora’ is a Te Reo term that translates to ‘person seeking well-being’.

The instrumental value of employment is that it creates opportunities for mental health consumers to access additional resources to improve their health and wellbeing such as financial resources and supportive social networks. From a Bourdieuian perspective, therefore, employment allows people with experience of mental illness to beneficially increase their social and economic capital. The benefit of these resources has been expanded on in research exploring resilience factors for mental health. One example of this is a 2002 Ministry of Health publication which cites economic security as being crucial for well-being as well as the availability of opportunities. Because of the lower-than-minimum-wage rate of benefits in New Zealand society and difficulties attaining work without experience, the mental health benefits that come from economic security and accessibility of opportunities is likely to disproportionately benefit those in paid work in comparison to the unemployed.

[Read more…]

The Dialectical Relationship between Work and Mental Health (Part 1)

is work good for mental health? This article is the first in series by Polly Peek addressing the issues of work and mental health from Marxist perspective. For more information on the concept of dialectics see http://www.marxists.org/glossary/terms/d/i.htmIn this article the term ‘mental health community’ refers to those people experiencing mental illness or distress, and ‘consumer’ refers to those using or having previously used psychiatric services.. The role work plays in the mental health of people experiencing mental illness is complex, with research on the topic appearing somewhat contradictory on the surface, the most prominent contradiction being whether work is overall beneficial or detrimental to well-being and recovery. Research suggests that employment, or engagement in meaningful contribution is a “critical component of the pathway to recovery” (Mental Health Commission, 2001, cited in Duncan and Peterson, 2007) and that the most significant employment challenge for people experiencing mental illness is overcoming structural barriers to attaining work. At the same time, other studies indicate that the correlation between work and wellness is not so clear-cut, and that the kinds of jobs most accessible to the mental health community are also those with the highest likelihood of decreasingwell-being and obstructing recovery. In approaching this conflict through a dialectical analysis, the question of interplay between work and mental health moves from one of ‘is work more beneficial or detrimental to recovery and wellbeing’ to one of ‘how can the contradictions of employment’s simultaneous facilitation and eroding of wellness be resolved’. [Read more…]