Toi Ora: Making the arts accessible

October 9, 2018 by

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.

Filed Under: Art, disability and accessibility, Mental health, Uncategorized

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

October 2, 2018 by

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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.

Filed Under: Activism, disability and accessibility, Health, Mental health

Marxism and mental health (audio)

September 27, 2013 by

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

Filed Under: Mental health

Putting the care into aged care

September 25, 2013 by

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.

Filed Under: Health

Politics and the mental health consumer movement

May 13, 2013 by

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…]

Filed Under: Mental health
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