“All the world will be affected, not just Syria”: Interview with a Syrian Australian artist

October 23, 2018 by Leave a Comment
Miream art

Artwork by Miream Salameh.

Ani White interviews Miream Salameh, a Syrian artist living in Melbourne.

First of all, can you tell us why you were forced to seek refuge and how this happened?

At the beginning of the revolution, I worked with a group of my friends to create a magazine against the tyrannical regime that ruled Syria for fifty years. This regime is represented by the Assad family, which seized power in a military coup by Hafez al-Assad.

Our aim in founding this magazine was to present our ideas, the goals and principles of our revolution and our dream of building a new free, civil and democratic Syria. All of us should be equal under the law that achieves equality and justice for all. The aim was also to document the crimes of the Assad regime and its violations of international law – which is still under the eyes of the entire international community – against all those who have participated in this revolution and supported it even with a word.

But after six months we were forced to stop it after we were attacked by the Assadist forces. I remember very well how in the second raid we miraculously survived the inevitable deaths by field execution that Assad carried out at every raid. I lost two of my friends in that brutal way; during a raid on Deir Baalba in Homs in the first year of the revolution, the Assad gangs shot my friend Hatem Mohammad, who was an artist too, directly in his head and heart. His relatives could not take the body until fifteen days after Assad’s forces left the area – or face being arrested or dying under torture in his prisons. On this day we were three friends in the house watching a video that I filmed in a region loyal to Assad in Homs to document the crimes of Assad and his regime. In this video I documented the stolen property that Assad’s regime and its intelligence and army were selling at the lowest prices in a market they call the Sunni market; they rob those areas whose people were shelled and forced to flee, then the Assad regime enters and steals, and sometimes do not just do that, they also burn some houses. One person shown in the video told how when they left these areas with cars full of stolen stuff, the army at the checkpoints took the LCD screens and laptops and left them the rest of the stuff to sell in the Sunni market.

Going back to the raid day, as we watched the video and handed over the caricatures, Assad’s forces began to besiege the neighborhood and prepared to raid it. I quickly went out with my friends who took me out of the neighborhood and then returned to document what would happen. Assad’s forces committed an outrageous massacre, killing 20 people and arresting many, including women, who were stripped naked in public, and arrested them. Assad’s forces destroyed all our things and stole all that was valuable. During that time I received many threats and warnings, and was forced to leave for Lebanon without informing anyone. But death threats, arrests and rape will continue if I try to go back to my country. During my stay in Lebanon, one week after my arrival in Australia, I was attacked along with my friends by Hezbollah and they attempted to kidnap me. But we were rescued with the help of two Lebanese gendarmes and three Syrian people who were there by chance and brought us home safely. I don’t know if I would be alive now otherwise. Then we came here on a humanitarian visa.

How did the Syrian revolution begin? What were the demands of the revolution?

The Syrian revolution began after students at a school in Daraa wrote anti-Assad slogans on the walls of their schools. So the Assad regime arrested and tortured them and this angered their parents who went to claim and demand the release of their children, but the security forces told them: forget your children and make others, and if you cannot, send us your women to do so. People in Daraa began to take to the streets and demand the release of their children and all those detained in Assad’s prisons. These demonstrations moved to the rest of the Syrian cities, one of these was my city Homs. Our demands were initially to reform the regime, release the detainees and abolish the state of emergency, but the regime did not respond to these demands and tried to suppress the demonstrations in a brutal way, from firing live bullets at the demonstrators to firing missiles, and using internationally prohibited weapons such as cuneiform bombs. They carried out campaigns of detention against all those suspected of joining the revolution or supporting it even with a word, but the more violence the regime inflicted, the more the demonstrations grew to overthrow this bloody regime and build a free democratic civil state in which we all live equally under a law that protects the freedom and dignity of the individual – not a law that is amended to suit the regime’s interests, the way they did when Hafez al-Assad died, and they amended the constitution within three minutes to let Bashar take power after his dead father.

Who is primarily responsible for the atrocities (and the political crisis) in Syria?

All the responsibility for war crimes is with the regime of Assad, no one else, all the destruction and half a million refugees at home and abroad, and large numbers of detainees and abductees. The Assad regime committed all of this and was responsible for it with the help of his Russian and Iranian allies, as well as ISIS, al-Qaeda and the Nusra Front. I include ISIS and al-Qaeda in this because Assad assisted them in entering Syria and put them in the areas to be a pretext for him to bombard and control and create displacement of their people. No-one benefits from their presence as much as Assad. In addition to al-Qaeda, Assad is the one who released the extremists and criminals from his prisons at the beginning of the revolution, for the same reasons that I mentioned earlier and to make it seem like our revolution is Islamist in form. Thus he has a strong argument before world public opinion to eliminate the revolution. Assad is the one who released Zahran Alloush [leader of the Jaysh al-Islam armed faction] who used people as shields and put them on the roofs of houses to prevent Assad from shelling them. He is no different from the Assad regime and is similar in criminality. All these Assad did to justify the war crimes he committed against unarmed civilians, bombarding them in their schools and homes, hospitals and markets using internationally banned weapons including phosphorus, chemical and others.

We all saw the massacre committed against our people in as-Suwayda city at the hands of ISIS. But we all know who brought them on buses from Yarmouk camp to the east of as-Suwayda to control the area there. This claim comes from the people of as-Suwayda who knew Assad’s games and put all the responsibility for what happened there on the Assad regime. And some of them said that the kidnappers allwere Da’esh [ISIS], in fact they were detainees in the prisons of the regime.

The Assad regime is the one who made our land an area of ​​international conflicts between America, Russia and others. There is so much evidence that the only man responsible for what happened to my country is Assad.

How do you respond to claims that Assad protects Christians and minorities?
Assad did not protect the minorities but protected himself by using them. The Assad regime did not show mercy to any of its opponents, neither the Christian nor the Druze, nor even the Alawites, who are the sect be belongs to. He arrested and killed a lot under torture and displaced them. Also he killed people whom were from his own sect and loyalists at the beginning of the revolution to claim that it was the rebels who killed them, and to lie to them that our revolution was an Islamic revolution aimed at killing all the minorities, I remember once sitting in al-Arman area, one of them told me: We shelled three buildings here in al-Arman. I asked him why he did that. He said because we want to make the people here believe that the revolutionaries did it and that their revolution is an Islamic revolution. I told him, but what about the children, women and residents of these buildings who were hit by these missiles? He said: It does not matter, the important thing is to believe what we want and fight alongside the regime. The regime has done a lot of these dirty tricks.

I am from the Christian minority in Syria and from a village called Marmarita, a Christian village in Wadi al-Nasara. I was forced to flee my country after I received many threats just because I stood against this criminal regime and participated in the revolution. Many young people in my village were arrested for the same reason, and after their release they immediately left the country. The artist and my teacher Wael Qustoun, who is from my village and was based in Homs, was arrested by the Assad intelligence and tortured to death because of his refusal to paint a helmet for the army. None of his family members knew of his fate until someone saw his body in the hospital with 200 other bodies. That person called the Wael family to take his body before they took him with the rest, to bury them in mass graves without informing anyone about their fate or what happened to them inside the prison. They forced his family to say that the unknown armed groups were the ones who kidnapped Wael and killed him. This what happened to me and my family and people really close to me. There are many, many more stories that anyone can learn, like the story of Marcel Chahrou, Basil Shehadeh and many others. They deny the claims that Assad protects minorities.

What role have international actors played in Syria, particularly the USA and Russia?

I am not a political analyst, but everyone who follows the Syrian situation is fully aware that no one cared about the death and displacement of the Syrian people. The Russians, the Iranians and Hezbollah participate with Assad in his war crimes against defenceless people. This applies to America and even to Australia, when they participated in the bombing under the pretext of eliminating terrorism.

We all know that all of them took part in this for their own interests, so that they don’t care about Assad himself and were ready to get rid of him when they were done with him. Even the Turks themselves, who some believe they are friends of the Syrian people, killed many Syrians as they crossed the border to escape the bombing to Turkey.

America has bombed many military sites and bases of Assad: but it is known to the free Syrian people that it is not because it cares about the Syrian people, especially after Trump’s decision to prevent Syrians from entering America. This applies to everyone.

After almost seven years, we no longer trust anyone, not even the United Nations and the international community, who could not prevent Assad from committing his own massacres, especially forced displacement and ethnic cleansing against the people, which is an international war crime under UN resolutions. Instead of stopping that, they were working to find safe passages to Syrians leave their homes and neighbourhoods. That is, Assad committed this crime under their auspices, and they came in after that and set up tents for us in neighbouring countries.

Can you explain what Assad and Putin’s assault on Idlib means for Syrian politics?

It’s crushing one of the last areas held by the revolutionaries. The same will happen as happened in Aleppo, Darya and Ghouta – massacres of people. Idlib has refugees from those areas that have already been assaulted. So three million people will be attacked. Assad is ethnically cleansing, which is a war crime. It will not relieve things for us, and also Turkey will face a huge wave of refugees. And many refugees will go by boat to reach Europe. All the world will be affected if this happens to Idlib, not just Syria.

And Turkey made a deal with Russia, to pursue a political resolution, not because Turkey cares about the people and want to save lives, I think Turkey just wants to save their country and not have to deal with refugees. And we all know what Russia and Assad want from Idlib, they want all of the territory in regime hands.

How do you respond to claims that the revolution is simply sectarian?

How can the revolution be sectarian? It includes all people from different religious backgrounds. There are the Druze, the Christian, the Alawi, the Sunni, and all of us have a dream of building a free and democratic Syria that is equal to everyone under the law. But what we talked about previously, about the release of the extremists by Assad and giving ISIS entry to our country, in addition to the media, which also played a big role in the painting of our revolution as Islamist. Not just this, but also it tried to show that there was no revolution at the start; when the media mention the Syrian situation they only mention civil war and never mentioned the Syrian revolution. But after seven years of the Assad regime, trying to crush our revolution in the most brutal ways, and the hypocrisy of the big powers and the international community and the United Nations closing their eyes to the crimes of Assad against us, the demonstrations in Idlib embarrass them all showing that the revolution is not dead, and did not die, and will not die.

During the revolution, its activists whose work was characterized by civil action were targeted by all the extremist parties represented by ISIS, al-Qaeda and the Assad regime. Naji Al-Jarf was targeted by ISIS who shot at him in Turkey, and Jaysh al-Islam kidnapped Razan Zaytouneh and her comrades, whose fate we do not yet know, and many more who were targeted by ISIS and al-Qaeda. And we don’t need to mention what the Assad regime did and still does to all of the activists of the revolution, because it is clear and obvious to all of us. All these criminals share one interest: to eliminate the revolution because they know that the victory of the revolution means the end of all of them.

What bearing does understanding the political situation in Syria have on refugee solidarity in Australia?

When we started leaving Syria in the first year of the revolution, the government badmouthed refugees. I don’t think the government cares about refugees. I remember there was one guy who was in the detention centre in Syria, and the Australian government deported him back to Syria, and the Syrian government arrested him there for 28 days, and they bombed his area and killed his father. If I went back to Syria, they would arrest me.

You’ve said Australia has a discriminatory refugee policy in how it ranks Syrians. Can you explain that?

Australia gave priority in granting asylum to Christian asylum seekers, ignoring the many refugees who had been stranded in the refugee camps for almost 7 years without any basic necessities of life, and that leads these people to risk their lives and the lives of their children at sea. Those who survived the drowning were detained in the detention centers of Nauru and Manus Island. In these prisons, there are families – women and children held for four years – and many more. Can you imagine children being forced to spend their childhood in such places, after they survived inevitable death in their country, for no reason?

In Australia, the boats were stopped under the pretext of preserving people’s lives. But if they really cared, they would offer an alternative to getting in unsafe boats, and offer a real solution to their suffering, like granting a humanitarian visa, easing restrictions on humanitarian visas. Humanitarian visas should be based on the conditions that people are in, not based on needing sponsors. Also Australia has bombed my country and made more refugees. If they really cared, they would not participate in the bombing.

What do you think about the protests against Trump’s bombings?

It’s funny how people get angry about this bombing, when the US has been bombing my country since 2014, and killing many civilians, yet people only protest when he bombs an Assad military base, killing nobody, and announcing it in advance so that Assad could evacuate. Listen to Syrians before you try to do something for us.

Do Syrian refugees (practically speaking) have the right to return?

The right of refugees to return will not happen until something changes in our country. They need to stop the ethnic cleansing. Assad remains in power. They need to address these things, before they talk about our return to Syria. It will not be possible to return while the regime stays in power. And in terms of ISIS and al-Qaeda, as long as the regime stays in power these problems will continue. First Assad needs to be taken out of power, then we need to address the sectarianism, then we can rebuild our country.

What can people in Australia or Aotearoa do to support Syrians?

We have to listen to Syrians, convey the truth of what’s going on, stand together as people and pressure the government here, and the rest of the world’s governments. My country, especially the media, is politicised. We must exert great pressure on the international community and the United Nations to do their work honestly, in protecting the human rights for which they were founded.

I believe that only people have the power to change for a better world. I believe that this will be the first serious step to stand with the Syrian people in their revolution and end their ordeal.

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

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Filed Under: Syria

Housing accessibility and human rights

October 16, 2018 by Leave a Comment

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by NIKKI STOKES

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 our landlord issued a 90 day notice of intent to take back occupation of the home my young family had been renting for two years, I did what most people in my generation have had to do at some point; I spent hours of my time desperately scouring real estate websites, publications and new paper listings in hopes of finding another home to rent at a time when demand significantly outstrips supply.

Unlike the majority of hopeful tenants, however, I dismissed most of the available properties without forwarding an application. Instead I went into the Ministry of Social Development and applied for social housing in hope they could make up for the lack of private rental houses that would be even minimally accessible to my mobility impaired daughter.

I was advised to continue looking for private housing and to keep my daughter’s disability a secret to prevent any discomfort from potential landlords. The wait time for social housing would be months, perhaps years, and emergency housing providers would unlikely be able or willing to accommodate a family with our requirements.

By luck we were able to secure a private rental and with some hefty funding for a temporary ramp, hoist system and fancy shower chair, the house was made minimally accessible to her basic care needs.

Housing and erasure

While stories like this are seldom heard in the well chewed-over discussions on housing challenges and solutions, they are hardly isolated.

In October 2017 the United Nations Office of the High Commissioner Special Rapporteur on the Right to Housing presented a report on the right to adequate housing for persons with disabilities1. The report highlights the fact that globally, the right to adequate housing remains beyond reach for most persons with disability and that legislation and policy have generally ignored the need for action to protect the right to housing for disabled people.

For people with disabilities, being unable to access suitable and secure housing compromises the choices available to them within their communities. If housing cannot be secured, a person may be forced into living with family members beyond a time period that they feel is appropriate. If housing is not suitably accessible, or cannot be reasonably modified to enable independence, a person may find themselves reliant on disability support workers. If housing is not located convenient to community facilities, support, employment or reliable and accessible public transport, a person with disabilities may find themselves isolated and struggling to participate fully in society.This creates vulnerability as disabled people are forced into situations where they cannot fully exercise their human rights. and reinforces harmful narratives of the burden of disability on society.

In such a society disabled people are actively erased. While 2013 census data estimated that a total of 1.1 million people, or 24% of New Zealanders were disabled it is estimated that only 2% of our housing stock is accessible. As the United Nations report says: “Most housing and development is designed as if persons with disabilities do not exist, will not live there or deserve no consideration”.

While numerous organisations and consumer groups representing various disabled groups have highlighted the urgent need for minimum accessibility standards and action for access to adequate housing, little meaningful action has occured at Government level. Housing accessibility is protected in the United Nations Convention on the Rights of Persons with Disabilities2, to which New Zealand is a signatory. It is therefore fundamental to our responsibilities to Disabled People that any future policy or initiatives intended to address housing be centred around ensuring a minimum level of accessibility.

Is KiwiBuild accessible?

The term “universal design” was coined by the architect Ronald Mace to describe the concept of designing all products and the built environment to be aesthetic and usable to the greatest extent possible by everyone, regardless of their age, ability, or status in life3. When comparing the cost of incorporating Universal Design into new builds against the cost of retrofitting those same builds, it soon becomes clear that failure to ensure accessibility in housing policy and initiatives is not only creating undue hardship to to persons with disability, but it is a poor economic choice in the longterm. According to the research, testing and consulting organisation BRANZ (www.branz.co.nz), building using concepts of Universal Design would add little additional cost (around $3,000 per dwelling). Yet retrofitting a building that has not been built to an accessible standard may well cost over $20,000.

The much-lauded KiwiBuild programme has made no assurances to or carried out consultation with any of the organisations representing disabled people. This seems at best counter productive to the purpose of state funded housing projects, and at worst a significant breach of Human Rights. A society that intends to be inclusive must begin with fully accessible communities, including access to housing for disabled people, and also “visitablity” – the ability to access the homes of friends, family and community members to ensure full and uncompromised participation in society.

The costs of not building new homes or carrying out renovations to a minimum standard of accessibility are significant, and in New Zealand that cost falls upon our already very stretched Health system. Funding for modifications is difficult and time-consuming to access, has strict limits that place financial burdens on disabled people and their families, and is not accessible to people who are unable to secure stable long term accommodation.

Recently Phil Twyford, the Minister championing the Kiwibuild programme was invited to speak at the Universal Design Conference of 2018. While his speech conveyed his recognition of the challenges of access to housing to that disabled people face and a need to ensure a diversity of housing stock to meet a diversity of need and family structure, it is concerning that no firm commitment has been made to ensure that a minimum standard of accessibility will be applied to the Kiwibuild programme.

Community connections

It was also announced in September this year that a new social housing development has been planned for Otara, incorporating features to meet the needs of disabled tenants. While 71 apartments have been planned for the development, only seven ground level apartments have been specifically planned to accommodate mobility impaired individuals. While there are many disabilities and needs beyond mobility impairment, this does not reflect that 14% of New Zealanders (over half of the disability community) have a mobility impairment.

Moreover, for people with disability, the ability to maintain connections with their communities and supports are vital. Creating separate communities for disabled people to exist in, rather than ensuring all housing provides the ability to accommodate all disabilities, forces people with disabilities to be cut off from their supports, their communities and to remain invisible.

As a carer the strain of inadequate housing cannot be understated. It has created an ongoing cycle of instability and crisis for our family. The struggle to find adequate housing in our local community has forced us to sever ties with our support networks, deal with transfer and inconsistency of service provision and case management, feel frequently vulnerable and exposed having unfamiliar care staff coming into our home, and struggle to find inclusive social situations. The lack of access to fully accessible housing or to state funded modifications has required that my physical safety and the safety of my child be compromised in the process of providing basic care.

Leaving disabled people vulnerable and without choices, and placing additional strain on their families and carers by failing to ensure adequate housing, continues to result in terrible human rights abuses for people with disabilities. We have a responsibility and the capability to ensure that adequate and secure housing is an accessible right for all.

Filed Under: disability and accessibility, Housing, Uncategorized, Welfare

Toi Ora: Making the arts accessible

October 9, 2018 by Leave a Comment

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 Leave a Comment

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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