Brains Trust – give me some referrals

It’s been brought to my attention that I am flailing about online in a pretty distressed and intense matter and generally freaking out a lot of folks. I’m going to totally own this one! I’m in an unprecedented (for me, I suspect it actually happens pretty often) mess, and I hadn’t got around to mentioning it yet but surprise! I’m autistic. So I’m currently freaking out most of the non autistic people and most of the autistic folks around me are getting it. I can’t do all this shit and keep all these people going and try to keep you, the general public, feeling calm and soothed and comforted and safe too. I kinda need to, because half of New South Wales currently thinks I’m having the most public psychosis ever lol (funny that when I do have actual psychoses, I am public about them!), all the bastards who are blocking what Jay needs are flinging some mud, and I’m generally careening around doing my best to juggle 1,400 things while on fire. So my capacity to hide that I’m on fire is a bit shall we say, reduced.

Sorry about that – deal with it.

Feedback about how to handle this more effectively welcomed. 🙂 Feedback that amounts to “have you tried being less autistic?” not so much.

Moving on!

Help me with:

I need a GP or physician with experience with complex disability and spasticity. Anywhere in Australia. Frankly I’ll take anywhere in the world. We need specialist competent guidance please and we can link you in with tech. If Jay doesn’t qualify for telehealth with you, we will cover the cost through business/donations. Please get in touch with me asap with your qualifications and availability.

I need someone who can edit my youtube channel, I am using videos to communicate with my team and having trouble loading longer ones. The obvious option is to stop waffling so much but that’s never been my strong suite. Paid, obviously.

I need the NDIS medical clearance for accessing a hospital guidelines. What exactly do my staff need to do to be cleared?

I need a way to get Jay tested for Covid without moving them from their bed. Thoughts?

I have stressed, vulnerable people in shutdown because people keep phoning them. Can someone help me arrange new phones and sim cards with new numbers so they can turn the old ones to silent and address calls as they can. They can’t do this now because this family is trying to stay connected to each other. We need to split up the lines of personal safe communication from the lines of more public and stressful communication. I really like amaysim – can they help? They are both used to iphones. Will pay, obviously, from donations!

I need advocates. Autism, disability, mental health, queer, whatever. Throw them at me. I can’t do this alone, but we can do this together.

Get in touch with me.

How to Stand with Jay

Help me save Jay

Australia is utterly failing the care of people with disabilities in the face of COVID-19. I have been working around the clock this last two weeks to try and save someone’s life. Right now we are a small team of family and support workers and we are all exhausted.

Who is Jay?

‘Jay’, the person who is likely to die within the next couple of weeks unless we can turn things around radically, is a fabulous, trans non-binary, autistic, non verbal wheelchair user with two wonderful partners who are also in severe crisis – one bedbound in an interstate hospital due to severe injuries that occurred while trying to help Jay mobilise without support, the other overseas and suffering chronic pain and crisis. Both are Jay’s supplementary decision makers and both have limited capacity to fulfill that key role without our support.

Catastrophic System Failure

If you know anything about being trans you know what kind of medical care Jay has been getting. If you know anything about being a wheelchair user you know what kind of access to services has been going on – they can’t even access most of their own home. If you know anything about severe allergies you know how easy we’re finding it to feed them and keep them clean and safe. If you know anything about severe mental illness related to trauma, you know just how this hell is impacting them. If you know anything about being non verbal you know just how well most people are understanding Jay’s needs, capacities, and limitations, and the absolute torture it is to be constantly so unheard, overruled, ignored, and humiliated.

Being part of this families life for a mere 2 weeks has been the biggest wake up call for me about the state of disability rights in Australia. We are FAILING, we are being FAILED.

What are we doing?

We are trying to keep Jay alive in impossible circumstances. The little team we have is full of the most incredible people I have ever had the privilege to spend time with, and we are all keeping each other going with so much passion and integrity it frankly makes me cry with relief.

But the problems are too big,
too entrenched, too systemic, and we are too few.
We need a bigger team backing us up.

I know we’re in all crisis with the damn virus. I know everyone is struggling in some way. But many hands make light work. If all you can do is share this post or send some love, I can’t tell you how much difference that will make. We can’t be alone in this anymore, please.

If I can’t save Jay’s life, I am damn well making sure they don’t die alone. They are clean, safe, cared for with respect, have access to their family, and can rest in the certain knowledge that I will be helping their partners pursue every single person and system who has so catastrophically failed them through every legal channel open to them.

It’s not just Jay at risk

Do you know how many disabled people are going to die because of COVID-19? How many are already being refused medical care on the basis they are too complex, too unlikely to recover, and that their lives are not worth living anyway? Did you hear about the Spanish residential home in that was discovered by the army with all the residents dead, abandoned by the staff? It’s started here in Australia. People with disabilities are being abandoned. I don’t know if we can save them all. I don’t even know if we can save Jay. But I can tell you now, those Spanish residents likely died alone in the kind of terror, agony, and despair that is unimaginable to the rest of us. If Jay dies they will not go that way. They will die loved. They will die clean. They will die with their beautiful assistance dog cuddled next to them. With a tender hand whenever it is needed. With a voice in their ear telling them we are here. We are watching. We see you. We bear witness. You will be remembered, always. Join me.

How to Stand with Jay

Being different in this world can be such a source of strength and sorrow. There’s probably never been a harder time for most of us than right now. Who do you know with a disability or diversity? Reach out. Check in. Even if we can’t save them all we can tally the dead. No one dies alone.

Never the Spanish Residential Home again.
Not here. Never again.
Help me make this happen!

Dealing with Trauma during a Pandemic

Hey folks, I know many of us with trauma are having a rough time at the moment too. Some of us are not safe in our homes, are facing increased risk of harm from people close to us, or are struggling terribly with awful triggers such as feeling trapped, abandoned, and not having enough resources to survive. Shops don’t feel safe anymore, many of us are losing access to essential supports and are finding our brains are blowing up under the strain.

I’m very busy at the moment supporting my family and clients, but some of my beautiful contacts have been swiftly responding to create free resources for people.

A friend of mine, Jade, is running beautiful resources such as reading kids books online particularly for little’s and kids in multiple systems – check out her work here. Jade has been co-admin of the Dissociative Initiative facebook discussion group for many years, she’s incredibly thoughtful and compassionate. She wrote a huge blog and has published a range of stunning books on trauma, multiplicity, and recovery.

Another friend of mine, Raven, is part of a huge free online conference for survivors. It is accessible from anywhere, and takes place between 23rd-27th of March. Raven is well known for her amazing Puppetry (R)Evolution using creative techniques and hand made puppets to discuss issues such as child sexual exploitation. Her 25-minute video is about using creativity and activism in healing on the 26th March, and I’ve been assured it will include puppets. Here’s the schedule and list of speakers with their topics: http://walkingwithoutskin.com/rape-and-resilience-summit-speakers .

I’m hearing a huge surge in self harm, suicidality, eating disorders, and PTSD symptoms. Anxiety and depression are high, right when everyone around us is telling us to not panic and go out and do a lot of things. Executive function skills are in short supply and bad memories are looming large.

Some of us know that if there are shortages, we’re not on the list of people who will be prioritised. That alone is a kind of social shame and rejection that can send people down a dark spiral. It’s hard to put into words, but we all need to feel like our lives have meaning and purpose, that we’re not just here to consume, and that we’re not expendable.

If this is you, or someone you care about – hold on. If the old stories have kicked back in and death and self destruction feel like valid – or the only – reasonable response to such widespread terror and shortages, hold onto the knowledge that we need you. If the ‘broken people’ trauma narrative has you feeling that you’re not destined or worthy of survival, if the idea of taking up essential resources that someone else might have to go without makes you want to run rather than fight for a place in the world, if it all feels too hard to hold on while the planet tips into darkness anyway…

I’m so sorry. I’m so sorry for what you are going through, and for the people who don’t understand. I’m so sorry that at the point where you want to stand up and shine brightest you’re falling apart. I know what it is to feel tuned to the agony of the world, to feel the death of every person, every creature, in your own skin like a million needles. I know what it is to be seduced by the idea of scapegoating yourself, that perhaps the world would be a better place without you in it. That perhaps someone more worthy would have a meal or medicine. That perhaps you could take with you all the darkness and anguish and dive over the edge of the world with it clutched to your heart and vomiting from your mouth and dripping down the inside of your legs and leave behind you a brighter and gentler dawn.

These stories are like parasites that eat us alive and turn our minds against ourselves. I say to you – what kind of world do we want? Because if you want a world that is a little kinder to the so-called broken people, we need you in it. If you want a world that is loving to those in pain, we need you to bear the pain and find the love. You cannot make any of it better or reduce the suffering even one mite by tearing another hole in the fabric of the universe on your way out of it. Stay here. Hold it with us. Mourn it with us. Love it, with us. Stay.

Pandemic Resources for supporting People at Risk

Formal supporter and informal/family carers alike are all facing new challenges at the moment with the pandemic. If you’re anything like me you’ve been scrambling to get in front of the situation, make sure basic needs are being met, and take care of yourself at the time. It’s a hectic time! Here’s a few resources I’ve created or come across which may help speed up your capacity to adapt, predict, and head off potential issues and risks.

Pandemic Plans

If you’re a support coordinator or social worker you may need a formal written safety plan for your most at risk clients/participants. Larger organisations are using overall plans, which is fine, but if you can doing personalised plans for at least the high risk folks – ideally in consultation with them – is good practice. It tailors the plans to the person and is an invaluable handover tool if you become unwell and need to shift your caseload to someone else.

Informal family and friend carers, a written plan may seem like overkill, but being able to share it with others does have value – assuming anyone else in your formal or informal networks has the same perceptions of risk and ideas about safety as you and the person with the disability (PWD) is a common point where things start to unravel. Fewer assumptions, more communication!

There are a few examples being kindly shared by people, so if you don’t have a public health background you don’t have to start from scratch. This is mine and you’re welcome to borrow, use, modify any aspect of it provided you don’t on-sell it. 🙂 Pandemic Safety Plan.

Karina and Co have generously made their Pandemic Safety Plan public too.

The Growing Space have also been agile responders to the crisis and have provided some invaluable free resources such as this fabulous Pandemic Checklist.

Free webinars

The Growing Space have also teamed up with Disability Services Consulting (DSC) and are offering a free webinar about responding to the challenges of COVID-19 for participants, families and PWD.

They are also running a free webinar for Support Coordinators.

DSC are offering this training on preventing infection.

Resources

DSC have their own fabulous list of COVID-19 resources for people with a disability including general and NDIS specific information.

I hope that’s helpful. Take care out there everyone. If you need some more specific advice or help reach out to me or the folks I’ve linked here, I expect the webinars in particular will be excellent.

Why do they do that? Understanding people's reactions to crisis

We’re in a pandemic and most of us at the moment are baffled and frustrated by each other’s responses. Most of us have heard about threat responses in terms of fight/flight, but many of the pandemic responses are actually about the step before that, what makes us register something as a threat in the first place.

There’s some pretty good data on this topic fortunately, and it can take some of the heat out of it to put people’s responses into a broader context. It’s not that people are being ‘difficult’, it’s that people have different capacities to identify threats and risk. Understanding that can be the difference between explosive frustration, and a compassionate and useful response. Whether you need to help your Mum understand why it’s important to stay at home with her sniffle, or a client make sense of increased hygiene issues for staff at the moment, or a policy maker , HR manager, or boss respond quickly and appropriately to the emerging crisis – it helps if you have some insight into why they are behaving the way they are.

Under-response

What crisis? Everyone is going mad. Panic merchants are the ones doing the harm. Everything is okay, really.

Statistically, about 70% of people will not recognise a crisis as a crisis. This is termed ‘normalcy bias’ and is a pretty well known cognitive bias or common thinking error for people. Normalcy bias simply means that the mind finds crisis hard to comprehend and tends to assume that things will stay the same as they’ve always been. The wiki entry on this is wonderful and has some great links to research and further information about disaster planning and so on.

For people in this state of mind, the crisis is people’s ‘overreaction’ and panic. They will fight this and resist efforts to recruit them into seeing there is a crisis because the panic is the ‘threat’ they are responding to. It’s an accident of thinking, that’s all. There’s a number of things in my experience, that make it more likely people won’t recognise a crisis such as:

  • Preoccupation with a different crisis – this often applies to highly vulnerable groups such as people experiencing homelessness, mental health crises, domestic violence, poverty and so on. They are already in crisis mode and focused on the next meal/not killing themselves/a safe place to sleep/appeasing a terrifying person in their life
  • No living memory of the crisis at hand. We get better at managing crises we’ve experienced before. We’re not even that good at recognising many of them the first time. Some things seem to be somewhat hard wired – fear of heights and spiders, for example. Others require memory and stories to help us recognise the danger – such as a swiftly emptying beach before the tidal wave hits. The living memory between severe pandemics can be easily lost.
  • Changing nature of the crisis can also slow our capacity to recognise and respond to it. Changing animal husbandry practices, travel patterns and global trade have also changed the nature of pandemics in ways we’re not familiar with. Some areas in the world have regular epidemics and are much more familiar with issues of biohazards. Others rarely deal with them are far slower to recognise them.
  • No emotional impact of the crisis warning signs. It’s primarily our emotional responses that allow us to shake things up from ‘life as always’ to ‘urgent new priority’. As much as we like to congratulate our own rationality and see people who under respond as irrational, in a way it’s the opposite. We’re scared enough that our emotions are able to hijack our plans for the week and insist – there’s a huge issue we need to address, forget everything else! If you want to learn more about this amazing process I suggest the fantastic book How we decide by Jonah Lehrer.
  • No training to deal with the crisis. People are generally better at recognising and responding to a crisis if they have trained for it. This is why we do disaster planning and train people in exiting planes, burning buildings, and so on. Basic level training gives us a slight edge. Really good training means actually doing the thing – getting people to swim out of submerged helicopters and so on. Muscle memory is reliable in crisis mode in a way that our rational brain and other forms of memory are not.

People who under-respond need to be bypassed where ever possible, and engaged with in ways that bring the reality close to home for them – not just statics but emotionally. The impact of ‘it won’t happen to me’ thinking can also be incredibly difficult to budge, so work with whatever seems to clicking best with them – facts and figures, appeals to emotion, proximity to the threat. These folks need education plus emotional impact. Sometimes are more able to act on other’s behalf than their own and will respond to protect a ‘vulnerable group’ provided they don’t have to face their own vulnerability. Humans have developed a lot of defenses against recognising our own mortality and don’t tend to appreciate having to pull them down.

The Freeze response

This is a threat response that can look similar to those who under-respond. The outcomes may look the same, but the mechanisms are the very different. These folks have identified that there’s a crisis, but have frozen in response to it. They are numbly going about their ordinary day, because they don’t have a new plan of action. They need a completely different response to the under-responders, because while they may appear the same they are in a vastly different space. These folks are in terror or massive dissociation. Emphasising the severity of the crisis will make this worse. These folks need emotional support and a clear plan of action. The education needed is about what to do next, and the emotional need is about hope. Hope is still present, and hope is preserved through action, not inaction.

Freeze is a common and at times extremely useful threat response – play dead until the predator leaves. As with all threat responses, there’s no single one that works in every situation. Freeze may well be a useful response for some people who are geographically very isolated. But for most of us, a plan will be far more useful, particularly as this plays out over weeks and months.

Over-response

Panic, hoarding, shutdown, terror, suicidality, eating disorders, self harm. Fight and flight. Threat responses are curious things, and some folks are registering the crisis but responding in ways that make themselves less rather than more safe. I can relate this, currently my ‘startle response’ is over the top, I jump out of my skin at unexpected sounds or touch. This is a part of my PTSD – I’ve literally been neurologically wired to expect and respond to a particular type of crisis – personal attack. A heightened startle response is helpful if I’m under some types of threat – it’s not so useful in a pandemic.

We’re all coming to the pandemic with our personal history of what threat looks like to us, what’s helped in the past for us (even if the type of threat is different) our cognitive distortions and bias, and our primitive threat responses that are largely outside of our conscious control and generally well geared for historical threats (attack, starvation etc) rather than modern ones.

Helping to contain the emotional responses through the ways that humans regulate such as social connection, grounding, mindfulness, prayer, self expression, and so on, literally calms the emotion centers of the brain so the rational mind can come back online and help to direct the crisis response to be more useful. This is why loneliness and isolation in quarantine are such huge concerns for people, because for many of us they cut us off from our connections and leave us in a state of chronic distress and hyper-arousal.

As long predicted, the new poverty is a technological one – those with internet connections and home devices are far more able to compensate for quarantine than those without. Helping people to access smart phones, laptops, and good internet or data plans will be as essential as food and medicine to help in the months ahead.

From Individual to Community Health

We have become used to thinking in terms of individual health in Australia and other developed countries. Epidemics and pandemics challenge this approach in a profound way that can be very uncomfortable for people.

Did you know, there have been over 1,300 epidemics in the world since 2011? (Epidemics are local to a region, pandemics are worldwide) Some places have been hit by these over and over. They are far more profoundly aware of the impact that lack of resources such as supplies and a robust public health system, community education, basic food and sanitation supplies, and a robust health workforce can have on everyone. Health is not and has never been just an individual behaviour or characteristic. We are healthy or sick, well resourced or vulnerable, together. When there are not enough resources, communities turn on themselves. This is the entire field of public health – how communities thrive or struggle.

Predators and vulchers

Already evident in the pandemic is a harsh fact of human existence, that we prey upon our own. Predators are out there doing harm in the form of scams, stealing, exploiting, and deceiving. Some are individuals who lack any other forms of resources. Some are vast organisations who are skilled at distracting people from their bloated consumption of common resources. Vulchers rarely directly attack their prey, but they will pick the bones of the wounded and vulnerable. They represent a significant additional health risk to manage. They are always present in any society, but much more so in conditions of scarcity and social breakdown. Civil war and food scarcity for example, often go hand in hand. Cultures that cannot provide for all members tend to self destruct and devour themselves.

Violence

Family violence rates are likely to vastly increase under the added pressures of the pandemic. Quarantine leaves people vulnerable to those they share their homes with in terrifying ways. Trauma bonding means people will hold strongly to those who are doing them horrible harm. It’s a huge social issue and it’s likely to get worse.

In the same way that school bullies and rapists are not all doing it for the same reasons and in the same ways, people who are violent to their families fall into basic categories of type. Some people are sadistic and enjoy torturing people around them. Some have profound control needs stemming from their own trauma. Some have impairements that make it difficult for them to understand the impact of their behaviour on the people around them. Some feel entitled to bend everyone else to their will. There’s a wide range of reasons people are violent, but the broad trends hold – less freedom to leave, and higher pressures are both recipes for disaster.

People’s who’s threat response is geared towards ‘fight’ are some of our greatest allies at the moment, tackling political inaction, industry collapse, and personal crises. But some are going home and attacking the people closest to them. Again our existing infrastructure already fails us – people trying to flee abuse are often faced with homelessness, poverty, cruelty, beuracracy, and additional abuse (same as children taken from their families). Under the additional strain of the pandemic the human cost is likely to be brutal.

False prophets

As people scramble to pivot in the new economy, false leaders will also emerge, many of them quite unaware of the harm they are about to do. People are already sharing health information that’s completely incorrect, advice that’s harmful, and resources that don’t work. As people are facing the overnight destruction of their existing business models, many are having to urgently reskill which means there’s a lot of folks branching out into areas with limited expertise and training. This is what happens when there’s totally inadequate community safeguards in the form of housing, welfare, and infrastructure. Desperation will create some of the most amazing innovations and wonderful resources. It will also create a whole stack of people who are way out of their knowledge areas.

So be careful of what you’re consuming at the moment. If the self care advice leaves you feeling ashamed and overwhelmed, ignore it. Most of it is slightly recycled rubbish and does more harm than good. If the resiliency articles make you feel vaguely superior to the people out there falling apart in the ER – they are utterly worthless to you. Resilience is largely about access to community resources, not your personal qualities. Think twice about what you’re consuming and where you place your trust.

Leaders and Healers

These folks are emerging too. A little talked about threat response is the tend-and befriend. It creates connection and cohesion during times of crisis. Strangers help each other, friends form deeper bonds, families put aside quarrels and pitch in. We are seeing magnificent online movements such as The Kindness Pandemic, and the local supports on Facebook through the #loveyourneighbour groups. People with expertise in disaster response, crisis communication, epidemiology, social cohesion, community resilience, trauma responses, mental health, digital communication, business models, public health, disability, diversity, inclusion, homesteading, freelancing, and managing unpredictable circumstances are all in the spotlight as folks who’s wisdom and experience is urgently needed. While some people are in panic or shutdown, others are emerging, sharing resources, making sense of the complex health instructions, translating things for their communities, and helping people to respond. They are like lighthouses. Look for them, they are always present and they shine brightest when things are dark. Often they’ve been doing these things all along, and suddenly we have a new clarity and can see more clearly the value of what they do.

Overfunctioning/underfunctioning

Right now most of these helpful folks are scrambling and under pressure. Where some people have had their work wiped out overnight, others of us are working until 3am – whether that’s in the ER or our home study, trying to close the horrifying gaps out there that will translate into suffering, loss, and death.

Some of us are scrambling to start new businesses, find new jobs, cover essential bills, refill the pantry, get life saving scripts, and deal with what’s coming. Some of us are falling apart. Harriet Lerner would frame this as over-functioning and under-functioning. In her books The Dance of Anger, and The Dance of Intimacy, she explored how these opposing but complimentary roles become common traps for people. Overfunctioners tend to cope with life by doing things. They swing into action, organise, plan, offer advice, and get in there to make things happen. They are productive but also problematic – all this activity is driven by avoidance of their own vulnerability. They (Ha! Who are we kidding!) We do, so we don’t have to feel. This means some of what we do is helpful (organising a swift hospital response, for example), and some of it is extremely unhelpful (responding to personal crises for example – have you just tried overfunctioning??). Worse, we trap people around us into underfunctioning by taking over things they are capable of doing.

Underfunctioners tend to shut down or get overwhelmed. They drop the ball, signal for help, and zone out. Over and underfunctioners often think the other can solve their problem, but they tend to mutually reinforce the roles for each other and actually make them worse over time. The issue is largely about vulnerability and responsibility. There’s a great little run down here in the Guardian. Underfunctioners have a fabulous capacity to ask for help. Overfunctioners have a fabulous capacity to ignore their needs and take on responsibilities. We may even take on both roles – one in one relationship and context, and the other in a different one.

We all have both a capable and vulnerable self. In crisis most of us are showing much more of one of those than the other. The overfunctioners need the courage and permission to stop and get in touch with their vulnerable selves. Schedule in some time to panic, cry, feel lost, afraid, confused. The underfunctioners need to be cued to bring their capable selves back online. Ask them for help with something they have expertise in – looking after the kids, making a meal, helping a neighbour. Don’t reinforce their vulnerability by taking over, especially not as a way to vent your frustrations and avoid your own feelings. Give them space and opportunities to be part of the solutions, not the problem.

You can do it

Empathy doesn’t mean agreement, but it does mean getting close enough to each other to resonate. We don’t need to fling mud and shame, there’s a context and reasons behind all the ways people are responding to the pandemic, and any other crisis for that matter.

You may be frustrated, baffled, overwhelmed, or simply tired of everything, but you are still part of the human equation and you’re still responsible for what you put out into the world, and what you consume. We each bring our own gifts to this challenging time. Soothe your kids, plant your garden, tend your neighbours, plan your safety responses, do what you do best, and have grace for those who are showcasing all the ways our minds can mess us up and make us fall on our faces in a difficult time. Matching our skills to the challenges we find ourselves in is largely a matter of luck. The next time it could be you. We build a better and safer world for all of us, or we keep fighting over tiny pieces of it, that’s really the heart of it. A stronger community is a healthier one.

For those interested in learning more about pandemics, or where I got the stats from for this article, this is a fabulous easy to read resource from the World Health Organisation: Managing Epidemics, key facts about major deadly diseases.

Support your community through Coronavirus

It’s a mess out there, I know. Whatever impact it’s having on you, I know that we all do better when we are connected. So here’s some thoughts about boosting your connections over the next month, for your own health and that of others in your community.

The disability paradox

If you’ve never had to deal with anything like this before – you have so much to learn from folks with disabilities who are used to struggling with medical anxiety, lack of clarity, having to self-isolate for health, trying to negotiate working from home, and limited access to essential resources. We are your mentors!

We are also under horrible strain. We have heard from many places that people don’t need to worry because it’s only the vulnerable people like us the coronavirus is likely to harm or kill. We are facing extra strain as resources run thin and supports struggle to keep up. Be very mindful of us and how frustrated, devalued, hurt, and angry many of us are feeling at the moment. Reach out where you can and remind us we are valued! Offer supports and learn from our expertise. Together we have got this.

If you are able to be active

Here’s a fabulous little template that’s been going around online you can print or hand write and leave in letter boxes or on doorsteps. According to the ABC it was developed by a Cornish woman Becky Wass who has posted it to her older neighbours. Here’s a printable link for download.

Image description: printable template with the heading Hello! If you are self- isolating, I can help. For full details see the link in the text above.

If you are self-isolating

Rose is unfortunately at high risk of complications if she catches COVID-19 so we are self isolating now. If you are doing so – thankyou and good luck. I will be creating a lot of online resources over the coming weeks so get in touch if you want to be notified about them. I’ve created my own letter which we printed and left under painted rocks in our area yesterday. Feel free to modify or copy yourself, here’s a printable link for download.

Image description: printable template with the heading COVID-19: Take care at home. At the bottom of the image is a painted rock made to look like a bus. For full details see the link in the text above.

Connection is the antidote

Communities are more than neighbourhoods. They are our friends and family, our online connections, our workplaces and support groups. The mental strain of a pandemic and quarantine can be huge but many factors such as boredom, loneliness, anxiety can be easily addressed. One of my friends hosted an online video craft session tonight. A physio I work with has sent out a comprehensive, informative, and reassuring email with clear pandemic safety protocols to their staff. Someone dropped us some lovely eczema friendly soap this afternoon.

If you’re looking for some extra resources I’ll be sharing a draft pandemic safety plan for vulnerable clients within the next couple of days, and here’s a couple of articles I’ve found helpful, courtesy of Headspace, and Prof Nicholas Procter:

Don’t panic, plan. Connection isn’t a crazy response, it’s part of the “tend and befriend” crisis impulse – less well known than fight or flight, but in this instance, far more useful.

Reflections on ‘Better Together’: coming to grips with Diversity, Inclusion, and Access

What an impressive event Better Together 2020 was. I have a particular soft spot in my heart for people who aim big. An inclusive LGBTIQA+ conference intending to tackle difficult topics is a seriously ambitious project, and I wonder if anyone involved had much sleep the fortnight of it all! It was messy, excellent, imperfect, exhausting, brilliant, frustrating, and absolutely worthwhile for me.

During the conference I shared my personal reflections called Safety and Diversity.

A couple of my newer roles are doing community rep work on behalf of LGBTIQA+ folks through the Freelance Jungle, and SALHN (the Southern Adelaide Local Health Network), so a big reason for me attending was to learn more about some of the queer community I don’t know so much about. It’s very difficult to rep such a diverse and complex community and I take it pretty seriously that I need to have at least basic knowledge across the whole spectrum to be effective. A conference is perfect for this, I can engage more than I can with books, and I’m not putting too much of a burden of emotional labour on friends or acquaintances to re-explain their lives 101 for the umpteenth time.

So I’ve come home equipped with far more knowledge about the critical challenges that need support for the Intersex community, the Asexual community, people in non-traditional relationships, and folks who are both queer and autistic. I’ve also got contact details for other advocates who have offered to cast an eye over anything I’m not sure of and help me find my way. Why is this so important? Well here’s a statistic that blew my mind – of all the funding that goes to LGBTIQA+ organisations in Australia, less than 1% is spent on the specific needs of the Intersex community. The distress around being surgically altered to better fit a gender without their consent is intense. As one person said with passion and eloquence “My gender was taken from me with a knife – this kind of inclusion harms people”. People assume this community is being supported because their initial is in the title, so other funds are not provided. This is heartbreaking and we must do better.

Many difficult topics were discussed and a wide range of people were given a platform from which to speak. A huge number of attendees were given bursaries to support their involvement (including me), and outside of the 2 day conference, a collection of caucus’ on specific themes such as trans and non-binary gender were held as private spaces for those communities only. The efforts towards inter-sectionalism were huge, we heard from a lesbian police officer, survivors of ‘corrective rape’, migrants, people of colour, survivors of conversion therapy, parents of trans children, teachers, and so on.

One of my favourite topics were the sessions about being allies. I’ve only ever heard this spoken of as an insider/outsider divide between queer and cis/het (nonqueer) folks. This conversation was much more nuanced and talking about many marginalised identities and communities, the need for allies to support each of us and our obligation to be allies to each other. A woman spoke about her efforts to support organisational change in her workplace and how she has been able to sustain it partly because she has had her own allies she can call on in need or frustration. They are webs and networks. I’ve come home a better ally of some, with more allies of my own, and excited to support others to take these steps themselves.

Another topic I got a lot out of was the sessions about cultural and organisational change efforts through mechanisms such as Rainbow Tick Accreditation. It was especially helpful to hear how they have been put together, the research behind them, and the challenges organisations can struggle with. I really appreciated the speaker from one of those organisations, a Jewish Care community, speaking honestly about their efforts through Rainbow Tick. He spoke about the difficulties when “virtuous intent (is) let down by human error, not malice or phobia” and acknowledged the challenges this poses for people struggling for acceptance, and those learning new practices, terms, and processes to be inclusive. 

Image description: 2 people sitting on a stage in front of a digital presentation. The title is: Working towards “cultural safety” for LGBTIQ people. A large rainbow coloured arrow with small text describing steps in a change process, points to the Rainbow Tick Accreditation symbol.

Better Together was not without challenges however. Inclusion can be full of good intentions and just as many missteps. When you are trying to be inclusive for a community you are not personally part of/know much about, missteps are also inevitable. Especially when you are trying to create inclusion for very diverse communities, there’s a real challenge. For example, the Disability caucus was attempting to meet the access needs of such a wide range of folks – mobility needs, vision impairments, Deaf and hard of hearing, sensory sensitivities, chronic illness and pain issues of exhaustion, and so on. It was a medley of contradictory access needs. When we changed from clapping out loud to using the Auslan for applause, the Deaf and signing folks, and those who find applause unbearably loud all appreciated it. The vision impaired and blind folks however, could no longer tell what was happening during the applause because no one realised to describe it. The app used for communication was super helpful for some and bewildering for others. The loud purring air conditioner was perfect for some, too cold or not cold enough for some, and distressingly too loud for some.

This is such an important aspect of inclusion. There is no such thing as universal access. Access – defined as whatever you need to show up and be included – be that sensory quiet spaces, ramps, a creche for kids, etc – is not a one size fits all but a buffet of various tools and options, some of which fit well together and some of which blatantly clash. The interfaith conversation for example? Was scheduled on the seventh day of the Jewish week, Shabbat, where observant Jews could not attend. The 8 hour days were exhausting for folks with chronic illnesses and pain conditions. The small rooms with locked doors were stressful for folks with trauma histories. Folks with mobility aids struggled to push through crowded corridors between sessions, and if they arrived late often couldn’t fit into the next session and missed out. Access is challenging. Access needs we are unaccustomed to is basically a guarantee for messing up somewhere.

Access is a universal need. But those in the cultural majority or with the most power have created cultural norms that fit best with their access needs. It’s not that some of us have them and some of us don’t, we all have needs. Some of them are fitted so neatly into our regular lives we’ve never thought about them. Some of them are neatly able to be fit together – most folks can ascend a gentle ramp with a hand rail, very few are excluded by that design. Some access needs are near universal with age – most of us will need a mobility aid at some point due to injury or illness and it’s helpful if we can fit through the doorways of our home and into our own toilet. Most of us will experience some level of change in our eyesight and hearing, in our stamina and the strength in our hands as we age, for example. Some access needs clash – such as sensory avoidant autistic folks who need quiet spaces and not too much visual bright clutter, and the needs of parents of young kids who need child safe environments with engaging toys and activities. (at times those needs are reversed for those communities!)

This doesn’t mean giving up on access and inclusion. It means ask for help. Assume we will fumble. Get allies and peers to support our efforts. Be humble when it doesn’t work – take criticisms and feedback on board for next time. Have a strategy in place for warmly supporting anyone our access choices exclude. It’s inevitable that access choices will exclude some – the larger and more diverse the community, the more inevitable this is. In those cases, it’s crucial to anticipate this and have a respectful response ready. Some of those people are very hurt and very angry because they are so marginalised and so tired of being excluded. Not being able to access even a so called ‘inclusive space’ will be salt in the wound, and we need to be honest about this. Diplomatic engagement with such communities is essential, as is offering to share resources where possible and inviting them to ‘fix’ the issue themselves – plan their own caucus, set up their own spaces, put their skills, knowledge, and capacity into it too. Rather than a minority trying to solve all the problems, the organisers become the facilitators of a diverse range of spaces and opportunities, supporting cross communication and respectful engagement. We cannot ‘fix’ each other’s problems but we can build solutions and pathways together.

Navigating criticism in community work is a topic I’ve written about before because it such a challenge and such an essential skill set.

For a conference like this I’ve been tracking the feedback and conversations online and I can see that many are contradictory (wanting the conference to be low cost to remain accessible to the many LGBTIQA+ folks on low incomes or welfare, and wanting spacious, centrally located venues with many large rooms. Wanting shorter days for folks with folks with lower endurance, but longer caucuses, and not having multiple events running at the same time where people belong to both communities. Asking for better input from diverse communities, also wanting people’s time and expertise to be valued and paid, and wanting to keep administrative costs low…) Like the fabulous good/cheap/fast: you can have any two out of three dilemma, all things are valuable but they are rarely all achievable at the same time. Compromise is a painful but essential aspect of any community resource and that can be hard to swallow. Like values, all are important even when they are in tension. There will not be consensus about which are most important, and when the folks actually carrying out the work make calls, it’s up to them to decide which are most achievable and how to navigate that compromise. It’s not okay to allow criticism to crush something that is important and meaningful – while not able to be all things to all people, or for angry people to crush the capacity of those who are not yelling across the divide but putting their skin in the game and trying to create something that helps. It’s also not okay to blanket refuse to acknowledge the costs bourn by those we exclude, and the unthinking patterns of our exclusions that fit the systemic racism, sexism, rankism, ageism, etc already embodied so often in our culture. Between these two poles lay allies, growth, hard conversations, good intentions, calling out, calling in, and an acceptance of the imperfection of our resources while also celebrating them.

At the end of Better Together, I wrote notes on what I’d seen work and where things could be improved. I also did some informal interviewing with people I didn’t know and took down their ideas, the best of things they loved, and what they’d love to see changed. The next conference will be Adelaide and I’m hopeful that we can learn and grow and make something fabulous, safer, imperfect, more inclusive, and just as valuable in 2021. I’m happy to have come home with great new contacts and a lot more information, and I’ll be putting it to good use to better support our fabulously diverse communities. 

Safety and Diversity: Better Together conference

Day three of Better Together caucus and conference. This is my favorite sign here.

ID sign outside toilets, by The Equality Project. Text in black and purple reads Gender Neutral Toilet:

Sometimes because of how people look, they aren’t allowed to use the toilet. We can do better.

Real Impacts: There are real impacts when toilets are labeled for women or men only.

Trans and Gender non- conforming people often face discrimination, harassment, arrest, or violence in toilets!

Everyone should get to do their makeup, change their clothes, change their babies, and use the toilet failures in peace.

Everyone who needs help should be able to use the facilities with their family members, friends, or guardians.

It’s important that we proactively work to create safer spaces whenever and wherever we can. We realise sharing a toilet could feel new and different, we appreciate your understanding.

The Equality Project
ID short haired person in a car, wearing a fluffy violet coat and teal lipstick, looking out the passenger window.

What it is to be different, to not fit the boxes and structures and assumptions of the world around you. I’m here to learn more, to better represent and include the types of queerness and diversity I know less or knew nothing about. To question my own assumptions and challenge my own internalized and unquestioned perspectives and norms and phobias.

What does best practice look like in inclusion work, in policy, in community engagement? Who can I learn from, ally with, and share my knowledge with? What are the range of differences, and how do they intersect with other communities?

It’s been my first queer conference. I’ve loved being here and met many wonderful folks. I’ve also found myself overloaded at times by noise, pain, fatigue, crowds. Having to be patient with my own limitations and let go of my desire to soak up all the knowledge, speak to everyone, justify my time here. Learning is a life long process. Community grows like a relationship, it cannot be forced or snatched.

Whoever I’m sitting next to knows something I can benefit from if they want to connect and share. I don’t need to chase anyone but to do what I need to be present.

Holding a space for my own sense of discomfort, the way I do and do not feel part of this community, my risk of self exclusion, the deep heartbreak of being a multiple in stealth mode, wishing we had this too, conferences and resources and pride. (we do, we are starting to, but that’s a post for another time)Listening to people glowing with a sense of belonging and remembering what it was to stand in Bridges and hear those feelings from other multiples.

What is it about conferences that makes me want to cry? That deep old wound of exclusion and rejection aches, fills up with tidal tear water and I’m a child again. Lost and terrified at school, trapped between anguished invisibility and agonized exposure. Loneliness that burned like fire. We were all that child, we all carry that child. Remembering another Sarah, at another conference, who first taught me this.

Someone walks up behind me and rubs my arm with affectionate welcome, our minds react on all levels, understanding it is prosocial touch, intended to bridge and create safety, wanting to touch back, needing to run, the screaming that starts beneath my skin. Keep breathing, loves.

Accepting that the path that’s open before me right now is about other more validated understandings of diversity. That it’s not a betrayal of my community to focus on the doors that are open and the opportunities that are sustainable. That this is my community too, that all identity is multifaceted and complex. That I do not owe suffering to the world. That mutuality is an essential aspect of community. That it’s okay to belong, to belong to more than one space, to hold membership across many communities, imperfectly and with gratitude and pain. To recognise the universality of these tensions and extend a hand to each other, the autistic folks struggling with the quiet space that’s not quiet, the folks in wheelchairs trying to get through the crowds to the lift, the young person standing awkwardly on the edge of the room.

Rose messages from far away and the memories of being on fire calm beneath her hand, go back to sleep. I write notes, share jokes, make space. Share meals, make connections, not – god forbid “networking”, but relationship. Nod through a talk, catch an eye and smile, hold someone’s hand when they cry, accept a hot drink with gratitude.

The wounded child in me begins to see the wounded child in everyone and the sense of being alone and on fire in the middle of the crowd passes like a breath. We all walk with ghosts too complex to put into words and in the end this is the essence of diversity, the fragmenting of experience into smaller and smaller categories until we stand alone, and the rebuilding into larger and larger overlapping groups and venn diagrams until we are all together under the umbrella of human. It is an oroborous of forming and breaking down and reforming, like a life cycle that honors both our difference and our commonality. Both need room to breathe and support each other.

Where I’m going in 2020

I’ve just arrived safely in Melbourne for the LGBTIQA+ “Better Together” conference. (Say hello if you’re coming too) I’m tired and excited and really looking forward to it and meeting all the other amazing folks.

Image description: smiling person with short hair and a bright blue shirt with the image of a kitten asleep under a book and the slogan “Curl up with a good book”.

I have Rose to thank for the cool t-shirt. I’ll be away for 5 days and my heart aches knowing the nights will probably be tough for Poppy. I, on the other hand will probably get a bit more sleep while I’m away. Parenting dilemmas!

ID person in a blue shirt and a child in a yellow shirt tendering hugging each other

It’s been a full on couple of months. Massive bushfires have been destroying huge areas of Australia. It’s an unprecedented disaster with the largest evacuations we’ve ever experienced. The losses are staggering. Some folks are in the thick of it, while those like me who are lucky to be safe are watching with horror and confronting survivor guilt and vicarious trauma. Helping out through donations and community support eases the helplessness and is a small balm to the fury and grief. Sometimes it’s big things, others it’s smaller gestures like taking fruit to the local wildlife carers or joining in a working bee for a local damaged farm. Anything helps to unfreeze, to ease the impact of months of bad news and horrifying casualties.

If you’re feeling paralysed, silent and distraught like I’ve been, you might find it helpful to look for something small you can do and do it. Look for good news, for people’s kindness, and share that too. Walk away from it at times to build your capacity to stay engaged and not burn out.

A lot of people are in terrible pain, facing life threatening conditions, or handling thousands of burnt animals. These are all high risk for trauma, and the survivor guilt of those of us who are lucky can lead us to torture ourselves as if more suffering would somehow help. This is part of vicarious trauma, and things that help with this are connection with community, breaks from it, humor, and keeping a clear sense of responsibility.

It is not my fault, I do not deserve either my good fortune or to be punished. I am a better ally and supporter when I’m not overwhelmed.

The other major focus for me has been my work and studies. I’ve been in an intense process of wrapping up projects and studies and launching new ones.

I’ve completed my grad cert in public health with mostly high distinctions. The mentoring program with Sally Curtis has started and been full of invaluable learning already.

I’ve started in two new LGBTIQA+ representative positions, one on the Consumer board with the Southern Adelaide Local Health Network (the hospitals, rehab facilities and so on). The second with the Freelance Jungle as an admin on the team which supports a 5,800+ online group of Australian and New Zealand freelancers. I’ve been a member and then patron of the group for a couple of years, and it’s a fantastic resource with a great focus on mental health and inclusion. The Better Together conference will help me understand both the needs and resources of the wider community.

Consulting and community development work has been so satisfying last year with a creative health project in prisons with SHINE SA and a peer based research project about systems change for people living with chronic illness with TACSI. I was so pleased to support these, they were both work I’m very proud of and look forward to sharing more about.

With face painting I’ve been getting more work from councils and organisations aligned with my focus around diversity and inclusion, such as schools for autistic kids, or queer events, which I’m very happy about.

I’ve launched a whole new arm of my business, providing independent support work for folks through the NDIS, with a special focus on mental health and diversity. It’s going very well and I’ve found that I love it even more than I anticipated. Being able to cone alongside people in their lives and homes and provide personal peer based support that is therapeutic but not ‘therapy’ is simply wonderful. Like a doula it’s a flexible mix of practical and emotional support, looking towards bigger goals but also very present in the moment.

It’s very similar to the group work I used to do in mental health services, such as facilitating the hearing voices group. I’m part of a small community of practice with a professional organiser and a handyman, and I’m setting up supervision and a network of resources. I’ve been extremely busy with it which was a bit unexpected – it’s taken off very quickly and I’m largely booked already.

I’m also booked to deliver a new series of local creative workshops which I’ll share more about shortly.

My work life is all coming together under an umbrella of creativity and diversity. I’m very passionate about it and excited to watch it grow in 2020. I’m putting applications in for further part time studies to continue to develop my skills in this area, and looking forward to getting back in the studio sometime to pick back up my current project there.

Thank you all for your encouragement and support, it’s taken me awhile to find my niche but I’m incredibly happy to be doing what I am, and feeling very aligned with the values and quality that links my different business areas together. 🧡 If I can support you or your project in some way, get in touch and let’s talk.

Beyond dogma and empathy failure: the power of listening to understand

I’ve been enjoying and slightly overwhelmed by my new Public Health class: Global and Environmental Health Issues in equal measure. I was surprised by the info on systems thinking, which makes complete sense when you’re thinking in terms of ecology, I just hadn’t expected to encounter it and I’m very pleased to learn more about it. My favourite quote so far has been from the Global Health Ethics video by Greg Martin:

If you want me to take your argument seriously, you need to show me that you can argue the counter-factual. If you can’t, then it’s likely that you’ve taken an unthinking, dogmatic position based on some sort of knee jerk philosophical reaction that you had, and you really need to take a closer look at the other side of the argument.

Greg Martin

This made me extremely happy to hear because I’m often frustrated with people’s unwillingness or incapacity to consider opinions they disagree with (even when I disagree with those opinions too). I’m especially concerned at the way this is at times used as a kind of badge of honor that the wrong ideas are so wrong and illogical and irrational they can’t be even comprehended by sane and sensible people like us. Our failures of empathy and imagination are not a merit, nor are they proof against being wrong! Many opinions that are awfully wrong have excellent merit from particular perspectives. Moreover being able to deeply empathise and understand other perspectives is a crucial step to being able to engage them.

Understanding the building blocks of ideas and beliefs – the experiences people are extrapolating from, the accepted wisdom of the experts they trust, and why they are trusted, the logical fallacies we are all so vulnerable to, and often the ideas start to become less incomprehensible and outrageous. Your own ideas are formed in exactly the same ways, which is worth keeping in mind. We are all highly fallible, and we all extrapolate from personal experience and are vulnerable to bias. It’s not unusual, it’s the human condition, however diverse the result. We all share similar processes in how we develop and defend our beliefs, even astonishingly unlikely or dangerously untrue ones that may be experienced in psychosis. The mechanisms and interplay of knowledge, experience, and emotion are surprisingly standard. We have more in common than we think, which can be an uncomfortable thought. It’s far easier to remain baffled by opinions you hate and the people who hold them than it is to acknowledge common ground and genuinely ask “why do they believe that?” – whether we’re taking about someone with opposite political beliefs or “crazy” paranoia. The unsettling reality isn’t how diverse we are, it’s how similar the underlying mechanisms of our beliefs are. We build our ‘sanity’ with the same blocks that also build ‘craziness’ and ‘wrongness’.

The heart of being able to listen and learn like this is a concept I think is best summed up by the phrase “Listening to Understand”. It’s an empathetic stance, but that doesn’t mean it’s mindless – to the contrary the more complex or different the ideas, the more you’ll need to be able to think carefully to reconstruct the framework you’re hearing. It’s not listening to find differences to debate, or even common ground to connect with. It aims to leave unchanged whatever is presented, but to simply and deeply comprehend it and be able to articulate it.

This type of listening is a profound tool to have in your communication kit. It’s an essential aspect of community engagement, research, interviews, and relationship. In formal settings it’s often needed to be able to translate and transport opinions into other spaces, such as understanding why people believe and behave the way they do when you’re trying to design a health intervention, training, or policy. Failures of empathy are behind many failed efforts in governance. When we do not truly understand an issue our best intended efforts are often half effective at best, and may be horribly harmful instead.

In teaching, this empathetic engagement is crucial to bridge the gaps between what people know now and what are trying to teach. Education is far more than imparting information, it is often about a process of shifting frameworks and belief systems. Long after the facts have faded the mindsets and beliefs remain. Poor quality education neither knows nor cares what the current knowledge and beliefs are, it simply imposes over the top. This is why so much cultural awareness training fails, it is underfunded, too brief, and places heavy burdens of understanding bigotry and the ignorance of privilege onto those who suffer the worst consequences of it. It is experienced by those forced to sit through it as a set of new behavior rules and rejected as “PC” thought policing because there so little time and capacity to empathically bridge what the beliefs are now, with the ones you are hoping to instill.

In informal settings it’s about having a more informed perspective on the people around us. We all make assumptions constantly about what’s going on inside each other, what we really think and feel and why we do what we do. We have to do this in order to predict each other and function socially. Far too often when it comes to divides of belief we defend our own perspectives by staying willfully unaware of what and why others think as they do. This failure of empathy means we often set up strawmen not as a deliberate strategy but simply because we’ve failed to grasp the real position of the other person.

This approach of listening to understand is tough in everyday life when we’re trying to have relationships with people who have vastly different and at times flat out incorrect ideas. It takes a special capacity to listen closely and be willing to be unsettled by the internal logic of others’ ideas to begin to understand why people think, feel, believe, and behave the ways they do. It’s also very humanizing and can connect us across divides. It can also unmask narcissism and predatory behaviour that hides in the imitation of caring words but is revealed by patterns of behaviour where people are harmed and discarded.

Being able to listen this way to people very close to us creates opportunities to be seen and heard and validated. It bypasses the trap of ‘who is right’ and moves instead into wanting to get inside the other’s perspective and really understand it. It shows how limited our internal models of each really are, however well we feel we know someone, the real person is always more nuanced and complex. There’s always things we don’t know, influences we hadn’t considered, conclusions we weren’t aware of. Particularly in long term relationships, we often feel secure that we really ‘know’ each other, and more and more we relate to (and argue with) the version of them that lives in our mind. This erodes connection. Being willing to suspend that certainty and deeply listen can profoundly change the context of your relationship.

Empathy is essential to authenticity. It emerges through a range of capacities – being able to hold a range of contradictory beliefs in your mind at the same time, being able to hold your own perspective lightly enough to genuinely seek to understand another, and firmly enough to integrate new knowledge and experiences without losing your own. Polyphony – the willingness to allow multiple voices and perspectives to exist without requiring consensus, is profoundly helpful. Every experience and conversation we have is adding to our own frameworks and beliefs in ways we are often not aware of. The heart of the work for me isn’t just this willingness to accept I may be wrong, and a lack of fear of exploring other beliefs, it’s also about being able to bridge a fundamental tension in how I see other people. There is both a profound diversity, and an underlying common ground to being human. Empathy emerges when we hold these in tension with compassion.

Complexity is one of the hidden faces of Authenticity and Diversity – it deserves defending

Complexity is very difficult for human brains, and we don’t much like it. We much prefer single cause-effect thinking and ‘this or this’ options to systemic thinking and ‘this and this’ options. Hence the vast quantity of memes and concepts widely shared, largely contradictory, and all intended to help guide our attitudes and behaviours in conditions of uncertainty. Complexity is confusing and stressful. We need the memes, the simple concepts, the straightforward protocols. They are the shortcuts that help guide us, over simplifications that function as maps to make it possible to navigate without overwhelm.

The shortfalls of over simplified ideas are all around us – they are like blunt tools misapplied to delicate situations. You should be a decent friend and stick by people through thick and thin but also weed out obnoxious and negative people from your life. Somewhere in the middle lies the messy complexity of real life, real relationships, and your own level of obnoxious and negative impact on the people around you. Over simplifications occur when we are overwhelmed by complexity and retreat to safe platitudes or rigid guidelines, or when we fail to engage with the topic or people with sufficient depth or empathy to understand it.

The New Zealand study has come to be what I term a ‘‘research-has-shown’’ moment in the public discourse, where the results of one study are overextended to reach an unwarranted conclusion.

Steven M Schnell

The risks of this ‘research has shown’ approach are huge. It is a soothing idea and one that is often used in training – I’ve used it myself when talking about diversity in the workplace and myth busting ‘common wisdom’. But it’s so easily a tool that misrepresents complexity and reduces it to something over simplified and destructive.

Complexity has many shortfalls too, too much of it too often leads to decision fatigue, decision paralysis, confusion, shame, and hopelessness. If we can’t find guiding principles in difficult situations we are at risk of collapse or disengaging. This is incredibly important when the complexities are social, and a common dilemma for anyone working or designing interventions in the community sphere. I know how exhausting it feels to pull all of the issues on to the table and try and really grasp the context of problems. It’s tempting to give up and return to ‘business as usual’ even if we know it has serious limitations. Complexity can be too much to deal with and break our spirit if we feel doomed to failure no matter our intentions.

Complexity is also magnificent. It is nuance, shades of grey, texture, authenticity. It is the realness so often missing from curated and risk adverse stories and services. It’s the stories that don’t fit, the diversity not captured by the ‘normal template’ on which our world is built. It’s why we are not cogs in a machine and not replaceable to each other. It is part of the astonishing depth, the contradictions, and the richness of our lives. It’s one of the reasons people love art, which refuses categorization.

All the quotes in this post come from this delightful article analysing the “local food” movement and backlash in my public health studies this week, Food miles, local eating, and community supported agriculture: putting local food in it’s place, by Steven M. Schnell. While it is a very interesting account of that topic, it is also a defense of complexity and the process of deeply understanding the nuance of topics and communities.

What is missing in many of these discussions is recognition of food system participants as fully rounded individuals, balancing many different, sometimes contradictory concerns, and making decisions about food within the complexities of the real world. Any attempts to understand what the idea of ‘‘local’’ means to consumers must not discard this complexity in favor of rhetorical,ideological, and quantifiable simplification.

Steven M Schnell

The approach I’ve found most helpful in my work and speaking is to give value to both complexity and simplification. When I illustrate my presentations and use a combination of text and image, that’s a deliberate choice to help to capture a complex idea or important topic in a way that fits easily into our brain – the meme. Each contains a ‘halo’ of the complex information it was embedded in, but where that knowledge is swiftly lost, the meme remains and holds a place for it. It’s like a process of loops – we dive into complexity, then surface into a place holder – a principle, premise, learning, or guideline that stands in place for it. They are the nutshell ‘key take away ideas’ that lose value on their own, but when presented with the complexity are retained in a way that represents much more complex shifts in mindset and belief than a questionnaire check box evaluation could assess. For example, much of my work in mental health speaking is about humanising the person in pain. It’s not always explicit but is embedded throughout the materials and part of the more subtle shift in how we feel about and engage such people. Mindset shifts are the trickiest but by far the most effective changes we can make, and making complexity safer to navigate is a crucial part of that.

I’ll finish with this lovely one-liner, so applicable in community and health which are often uncomfortable bedfellows with neoliberal ideas of individual responsibility and free markets.

Doctrinaire free traders, it seems, are all in favor of freedom, unless consumers are using that freedom to choose values other than low prices to guide their decisions.

Steven M Schnell

Shut up

When the world is built on principles that make pain private and unspeakable, anyone in pain feels alone.

When those in power make the rules that hide their indiscretions, their avarice, and the suffering left in their wake, it is literally unspeakable. The nature of oppression is the way it can not be spoken or at times even thought.

The average customer satisfaction rating is above the national guidelines which is a fantastic indicator of success. Within the dissatisfied customers are a smaller, highly diverse group of people so harmed and traumatised they would rather suffer great pain and risk terrible harm than be exposed to them again. We do not collect that data. We not speak of them.

Friendship is the building block of every community, an elastic concept applied to the closest confidant and loosest acquaintance but all with an implication of acceptance and mutuality. It saves us from impersonal formal care, and it fails us in ways too painful to put into words. It is at once more robust and more frail than we think.

Therapy is at times merely an expensive process of transferring trauma in contained doses from one person to another.

Bitterness is almost beautiful – Wendy Orr

I cannot speak of your brutality and of your tenderness at the same time, people hear with only one ear, listen to only one story.

We do not speak of the truly horrifying things. And when we do, we mouth platitudes and vomit rage and break spirits.

After all these storms and tears, I must go home, and face the truth that no one dies of loneliness. More’s the pity – it seems the obvious solution.

On the floor of the therapists’ office I die and come to life. I break into a thousand pieces and walk out again with my face almost but not quite put back together. Pretending to be human with everyone else pretending to be human.

It would be funny if it wasn’t so absolutely f#@$ing sad.

It nearly destroyed me last time. The moment I feel blamed I’m leaving.

Such perfect companions. You betray me and I betray myself, and all who love me. We are always fated to find each other, through history and all of human life, a pairing that inevitably meets over and over again.

Good intentions are not enough. They are all I have. My hands are empty. The ones who did such harm while doing their best, the unquiet ghosts.

Sex and rape look pretty much the same if they are described in writing with no attention paid to the ‘customer experience’. My health and hospital records also probably read quite well, good care, good outcomes. So what’s the problem?

But how was the play, Mrs Lincoln?

Trauma creates a form of diversity. Brains are literally wired differently and it’s visible on scans and tests.

We all want to be virtuous but we don’t like risks and we don’t want to be uncomfortable.

Sometimes I hate myself so much it’s hard to breathe, speak, feed myself, stay alive. Yet it’s like a safe cave for me, when I step outside of it and see the vastness of the pain and betrayal that’s waiting for me, I don’t know how to bear that and I turn back around and hide in my cage. It anchors me.

How can you be so mean to someone so meaningless? – Batman Returns

Stockholm syndrome applies in some degree to every human in existence. We all need to eat and so we all need to lie to ourselves. All our captors are kind and brutal in turn. We empathise with them.

I was not punched or raped. My trauma is not trauma the way we think of it, my scars are self inflicted partly out of a craving for scars, pain I can see. Yet I am a freak, different, awkward, unlovely, excluded, and painfully unsubtle about my feelings on the matter.

I first wanted to die when I was ten.

People reassured me the nightmares would go away when I became an adult. They were wrong. They started to ease off when I came out at 29.

I spent the precious hours after my daughter was born sobbing and unable to move, strapped to a table while vapid doctors sewed me up like a lump of meat. Something in me broke that I can’t mend. It remains stubbornly misshapen and brutalized as a monument to an act of harm that would not even be remembered by the white coats who perpetrated it, utterly secure in their certain good intentions. Only I know if it was sex or rape. They didn’t ask. It wasn’t sex.

I have only ever wanted to belong. We do not create mental health resources for the oddballs, like everything else they are written for the normal, white, cis, straight, middle class, able bodied who have gone through a rough patch and just need to hold on for things to get better.

The very best part of my days is the night, sleeping next to my child. The smell of her hair, warmth of her breath. I soothe the growing pains, calm the bad dreams. When she is content my world is at peace.

Everything anyone has ever thought is true – Phillip K Dick

You’re a hopeless romantic… It would be funny if it were not serious. – Ray Bradbury

You’ve got to jump off cliffs

All the time

And build your wings

On

The

Way

Down.

– Bradbuy

Art speaks for us when we are without words

A friend recently went through a huge ordeal, their kiddo had been suffering from debilitating headaches and was suddenly diagnosed with a brain tumor and scheduled for surgery.

I live on the other side of the world. You want to be there, to hold hands and make food and crack jokes and bring tissues. Everyone feels helpless and mute.

The surgery was a success and the long rehab is going well, albeit tough. I thought about the workshops I’ve run with people who’ve been marginalised and harmed and ignored, the power of a zine to bring together deep insights and bypass all the rules and blocks and limitations that inhibit us. So I mailed a gift pack. An example zine of my own, a brief set of instructions. And a zine I created based on online photos of the experience.

This is one of the simplest styles, a single piece of paper, cut along the middle, folded into a small booklet of 8 pages.

Sydney sent me a zine in return, which was beautiful and made me cry. These moments of connection are precious and healing. Art can help make it possible. I hope you find a way of reaching out too.

Ink Painting: There is no bridge

Image description: Blue, purple and black ink artwork depicting a dead elderly man in a boat full of flowers on a river, with a young girl on a swing anchored to the boat, and a woman mourning on the riverbank.

My Grandpa’s committal service was beautiful and painful, lovely and heartbreaking. I read a letter by Rilke exhorting the mother to embrace death as an essential aspect of life, part of a whole that is richer for it. Rilke was an astonishing poet and letter writer, full of passion and depth. Looking for a suitable poem to read at the service was good therapy.

We painted this today, with Robert Oster’s Blue Black ink. The text along the riverbank reads “There is no bridge between us where you are”. The ink is watersoluble so the brush and pen work is completed in layers, drying then reworking the water to create depth. The color is stunning, a dark purple that bleeds blue.

Parenting with chronic illness

Each gallbladder attack I have is taking longer to recover from. My fibromyalgia flares and I feel like I’m recovering from getting a good kicking. I recently learned that I’ve been cutting too much fat out of my diet to try and prevent extremely painful biliary colic episodes. The extra low fat diet left me with headaches, exhaustion, foggy brain, and chronic pain. Bumping my fats back up has been quite magic and I’m feeling much better. I’ve been scheduled for surgery to remove the gallbladder next month.

Image description: A young child on a park swing. There are trees, lawn, and bark chips. A small green bike is lying on the ground by the swing.

In the meantime I’m muddling along. I used to be so afraid of this place: sick and trying to parent. It is hard. It’s really hard. I’m so incredibly fortunate to have good people around me, that network I put effort into building has saved my life. It saves me when I can text a friend in distress instead of crying in front of Poppy. When there’s someone to pick Poppy up from the ER so I can be treated. When our daycare provider lets me arrive late while I try and coordinate a crisis. My world has flexibility, care, accommodations that ease the sharp edges of my limitations and soften the harshness of the things I’m dealing with.

This creates capacity I wouldn’t otherwise have. So rather than merely the nightmare stories I feared, mostly Poppy and I muddle through. Rose takes her so I can rest or nap. I walk her to the park so she can ride her bike. We snuggle under a blanket with a hot water bottle and watch a movie together. We do crafts or painting on the dining table. She plays in the back yard while I hang washing.

I have a collection of low energy/high pain ‘tough day’ activities like this I can enjoy with her. And I’m still working towards the lower daily effort/systems and routines/life on the easy setting changes I started making last year so that my home and work is efficient, sustainable, and frees up as much energy as possible for the things I’m passionate about – such as parenting, care giving, socialising, adventures, and creativity. With thought, planning, and support, it’s actually still wonderful to parent even in a rough health time. I’m incredibly fortunate and I love her to bits.

Love, by the water

Endometriosis, adenomyosis, PMDD, and PCOS is an extremely unhappy combination of troubles. For me it means very heavy, painful, unpredictable periods that often trigger severe depression and sometimes suicidal distress.

I’ve spent most of the last 2 days in bed with a heat pack. Today Rose took the lead and set up a beautiful family trip for us all. She made savory muffins and took us all down south to a beautiful beach for the afternoon. I went for a gentle walk in the surf, Poppy collected rocks and shells, and we all enjoyed watching a seal frolic in the light rain.

Image is of Poppy, aged 3, wearing fabric rainbow butterfly wings and running along a beach.

It was so joyful and relaxed and a safe space to just be. As the rain fell lightly into the shallows where I walked I wept. My heart has been full of doubt and confusion and heartbreak lately. Watching the light catch the water and the foam on the sand, I’m so grateful.

One of the things I fell in love about Rose was her ability to create these beautiful adventures: inexpensive, simple, and so connected to the moment and the environment. I’ve often yearned for these things but when I’m sick or distressed I struggle to arrange them. My initiative is paralyzed, so I yearn but cannot act. I recall many days when I lived in my unit by the beach, longing to go down to the water and unable to. I could never have made it to the beach today, but with her doing all the heavy lifting I could be swept along to something beautiful and nourishing. I fall in love all over again.

The Dark Sides of Safety

I adore Becky Chambers. Finding a new author to crush on is the absolute highlight of my month. I’ve just read this beautiful book for the second time and am loving the kobo quote tools. https://www.kobo.com/AU/en/ebook/the-long-way-to-a-small-angry-planet-1?utm_campaign=PhotoQuotesAdr&utm_medium=Social&utm_source=App_Acq

We talk a lot in trauma recovery about safety and empowerment as the magic that heals which is real and true and appropriate. They have a dark side though, which is rarely explored. What is it to feel safe? Is safety a good and healthy aim for a human? What happens when we feel unsafe? Threat is the opposite of safety, and many of us with backgrounds of complex trauma feel constantly and chronically threatened, triggering an array of responses across the small menu of mammalian options: fight, flight, freeze, fawn. Safety is crucial to being able to function outside of this menu, to bring to life different aspects of our selves than simply the reflexes of raw survival.

But not everything that threatens us does us harm. And not everything that feels safe is good for us. Abusers feel threatened by the freedom and autonomy of the people they are in relationships with. They restore their sense of safety by undermining that autonomy.

Becoming aware of the ways in which you are privileged can feel very unsafe, especially if you are also tangled in shame and guilt as if you are somehow personally responsible for it. For many people the idea of having privilege has become a kind of personal taint, a character flaw to overcome rather than an abstract awareness of unequal opportunities and a responsibility to share them.

Some people feel safest at the bottom of every hierarchy, too small and powerless to harm.

Some feel safest at the top, apex predators who see all others as fellow predators to compete with, or prey to devour.

When I developed the peer based recovery group for Bridges, the face to face support group for people with dissociation and or multiplicity, I choose Safety as one of the key values for the group. Striving to make a safe place is essential for the involvement of people who had often experienced severe trauma. And yet I did so slightly ambivalently, aware that safety is a good goal but also an insufficient one. Without other values to be in tension with, safety is a kind of death. Extreme risk aversion creates coffins of our lives: isolation, dehumanization, and disconnection rule.

As a parent, safety is a primary concern for me. An essential part of my job description is keeping Poppy and Star safe. Whether that’s from physical injury, sickness, abuse, or neglect, this is my concern. However I hold this concern in tension with their other basic human needs. Freedom, autonomy, connection… many of our essential needs require risk. If I focus only on safety I will shun risk. Risk is my enemy, to be identified and dug out of life like a weed. The highest possible aim to reduce all risks to nothing. But risk adverse living has predictable and at times devastating outcomes. It is in itself a risk to be understood and treated with great care. Children allowed to take no risks also cannot learn, grow, connect, gain confidence, cope with mistakes, or navigate imperfection. Risk adverse approaches lock them into extremely small lives where obedience and fear dominate all.

Risk competence is about understanding that safety must be paired with unsafety. It’s about knowing that a culture that has horrifyingly high rates of serious child injury is taking huge risks, and also knowing that a culture with almost no serious child injuries is taking huge risks in other ways, because the only lifestyles in which that is possible preclude climbing, running, playing outdoors, pets or animals, sports, and all the opportunities children need to become competent at using their bodies and navigating their environments. There is an optimal window of risk, too much or too little are both harmful, which is a difficult concept to fathom in a public health framework.

What this optimal window is and where its boundaries are is highly contentious, informed by the personal values in tension with safety, and the way we cope with the fear of bad things happening. A major way we navigate this fear is called the just world theory. This is the belief that bad things will not happen to us because we are smart and decent people. This is a major way most of us create a sense of safety in an otherwise unpredictable world.

Most of us who have been through trauma can speak of the savage outcomes of the just world theory. The first is that we tend to blame victims of bad situations for their circumstances, because it makes us feel safer to believe they were at fault in ways we would not be. The second is the devastating loss of essential illusions when some trauma strips the just world theory away from you. Trying to function in a world that is unfair and uncontrollable is a nightmare when you’ve previously relied on comforting beliefs that all things work out fairly in some way.

As victims (/recipients/survivors) of trauma we are desperately trying to piece back together our own sense of safety, while resenting the painful price we are paying for the illusions of safety of those around us. We don’t want them to be safe, we are begging them to be brave. To stand with us and face the gross injustice and paralyzing uncertainty of our situations. Safety is cultural denial and numbness in the face of devastating pain and abandonment. As those who are marginalised and dealing with various forms of oppression, likewise.

What this looks like when it comes to risk is a cruel system. People (and parents) who take risks, even massive risks, and succeed are lauded. The acceptibility of the risk is determined by the outcome. Those who take even minor, or very well equipped and skilled risks who have bad outcomes are frequently attacked, shamed, and shunned. Whether they are parents going sailing and dealing with an ill child, or a mother going out for her birthday who is betrayed by the babysitter who harms her child, no risk is acceptable in the context of a bad outcome. Such is the nature of a risk adverse culture with a just world theory (embedded in neoliberalism) and no agreement about the optimum window of risk.

This savagery drives highly risk adverse parenting, which is often called out in ways that shame those parents (mothers) with little awareness of the underlying context. Few of us feel we can afford the risk of being attacked and rejected by our communities at the point of a devastating experience. Each time we witness it or participate in it we drive home the message more strongly: no one can afford bad luck, bad circumstances, or risks. Safety is the only practical goal.

This drives the ‘mummy wars’ where I’ve been told I’m a child abuser for such minor lifestyle choices as allowing Poppy to attend an outdoor event with me, permitting her to not wear shoes in a park, or allowing her hair to be dyed purple. The intensity of these interactions far outweighs the circumstances. Risks become linked to difference, without consensus there is no safe place to stand where judgement won’t fall.

Safety without courage not only cages us in very small lives, it cages our communities and exiles those unfortunate enough to suffer. Safety is essential for us, a basic prerequisite for or ability to get up in the morning and function. We can build it on capacity, consent, freedom, and experiences of risk. Or we can build it at great cost to ourselves and the people around us. It’s a beautiful and noble goal, especially when it’s been shattered. But it also has powerful dark sides best keep in mind.

We are all multiple, and so are the people who hurt us

This morning was a rare one, everyone in my little family home for breakfast. I cooked pancakes and realised my heart is never so full as when we are together. My girls are so precious to me, I feel warm, strong, fierce, joy-sadness when I’m with them. Their happiness is my happiness and their hurts break my heart. It breaks and mends over and over.

I am different with them. There’s a theory about the ‘self’ which states that who you are is not a fixed thing, like a rock or a plant. It’s a unique dynamic. That ‘self’ is what emerges in relationship with another. So each ‘self’ in each setting, each relationship, is slightly unique, and has aspects that may differ from all others. This is both separate to and part of multiplicity. I experience this in both which parts are brought out and also the different selves we all have. This is an aspect of multiplicity which is universal to all of us.

This dynamic also goes in two directions. We ‘hook’ each other into roles. When I feel young I bring out the parent in you, and vice versa. You may recoil from my aloofness or warm to my charm. Relationship dynamics bring out age old stories and patterns between us. They move us deeper into the grove of who we have been accustomed to thinking of ourselves as being, or bring to light new aspects of ourselves we had forgotten or didn’t know were there.

This curious TED talk “Rethinking Infidelity” explores the idea that being in search of a self we have lost for a long time is an aspect of why we are unfaithful to each other. (jump to 9.30 if you want to skip to this part) That in time we put away the parts of ourselves that don’t fit with our partner and community. And a new, different person can bring to light a self that makes us feel more vital and alive than we have in years. Unable to see that this is a normal challenge of navigating community – finding the balance between the social homogeneity and the wild individual – we embrace the new person as a salvation and shatter everything we’ve build and loved until now. And then we do it again.

It isn’t that we are looking for another person, but for another self.

Esther Perel

Integrity is about the threads of beliefs and values we hold through these transitions. The nature of universal dissociation is that it is entirely common to have three beautiful relationships and one in which we are horrifically abusive. Some nazi guards came home from violence and were loving to their families. A man may be kind to his children and friends and brutal to his wife. A mother may love three children and hate and abuse the fourth. When you think of self as one static thing this is horribly confusing and we keep trying to understand which story is true and which self is real – the kind or the vile. When they are understood as both true, real, genuine, there’s both a kind of devastation and a relief in being able to hold them equally in mind. No longer are they different sides of a coin that cannot be viewed at the same time, they are different aspects of the same person and both true.

So the abused person who struggles to find their way to the ‘truth’ of their situation – wrestling with competing stories of who their abuser ‘really’ is, finds a way out by embracing the whole of them. They are both Jeckyll and Hyde. They are sweet, wounded, sincere, and savage. It’s all real, inasmuch as any self is real. You cannot have a relationship with only one of them, however wonderful they are and however much you adore them. And you cannot soothe the savage ones through further abasement, sacrifice, and suffering. Until and unless the sweet ones take responsibility for the savage ones, they will continue to let their demons take their pain and rage out on you, debasing and destroying you both in the process. In some cases the savage selves use the sweet selves as little more than bait to trap the people they envy and wish to harm.

Some relationships – and these are the precious ones – help us be our best selves. With my girls I have the opportunity to parent, mother, mentor. There’s a groundedness and centredness I feel in that role that I treasure. An opportunity to be someone I have always wanted to be. I am incredibly lucky to have the chance to help them grow up and find who they are.

Finding Ways out of Burnout and Overwhelm

Poppy and I went adventuring in a creek recently. It was so peaceful. There are struggles and difficulties all around, then there are these islands within it all that are so precious, where everything is still.

I clear a space and ignore my phone. No multi tasking. The curse of the freelance life – work creeping into every waking moment, is deliberately put aside. I don’t problem solve, plan dinner, handle admin. There is a rare clarity, ice clear and deeply refreshing.

Since I last burned out a couple of years ago, I’ve been quietly exploring a private project: what creates overwhelm, and what reduces it? Burn out is bigger than overwhelm, but for me it was the biggest and longest issue I had to deal with. I see overwhelm everywhere, not just at work but in everyday life, most especially for parents. It’s often framed as part of various mental illnesses and disabilities, but it’s such a common and difficult experience I feel it needs its own name and space to be understood.

For me, overwhelm is a chronic state of exhaustion, scattered thought, poor concentration, emotional intensity and changeability, and inability to grasp or manage tasks.

Reflection

I’ve been borrowing ideas from many sources, and using my own therapy as a kind of compass to treat my own overwhelm. I try things out and notice if my overwhelm deepens or eases. I’ve found reflective journaling is ideal for this. Each day or two I journal and notice what’s helping and what’s making things worse. I get an overview that’s nearly impossible for me to find any other way.

Some days when my overwhelm is high, I can barely walk into my shed. It’s way too much to handle, a million things all needing organisation I simply don’t have and I feel such panic that even opening the door makes me want to cry. Other days when my mental space is going well I can walk in and my mind is clear. It’s really not so bad, just a few bits and pieces. I can see what needs to be culled or sorted, packed better, given away. It’s so manageable. The difference can be startling!

Trying harder doesn’t help

For example I’ve found overwhelm is often embedded with false beliefs about productivity – that doing more and working harder and longer are essential to productivity. So my intuitive solution for the early signs of overwhelm (one of which is reduced productivity) is unfortunately to do a bunch of things that are likely to make it worse.

As counter intuitive as it feels, rest, doing something completely different, and setting aside proper time to deep dive instead of scattered multi taking are all very useful for productivity.

Understand the weight of the invisible mental load

One of the challenges about burnout in life rather than work is how difficult it can be to get a break from it or even see it clearly. Some of us find a lot of our work isn’t only unpaid but unrecognised, even by ourselves. We feel exhausted but can’t name what we’ve done all day, can’t take time off but don’t use the concept of being ‘on call’, and end up fitted to the gaps in the somehow more important activities of study or formal paid employment being carried out by those around us. Being able to notice what we do and who we do it for can be essential to recovery. I have found simply tracking my time has been eye opening in terms of things like how much sort work I do for others on a daily basis. This isn’t a bad thing – unless I don’t factor it in. This is a very interesting article on the topic of invisible mental load.

Executive function capacity is a limited resource

I’ve also found it useful to consider ideas around ‘executive function’ from the autism community (here’s a great post about an adult autistic’s perspective on his struggles with executive function limitations). Executive function issues also turn up a lot for folks with ADHD, trauma, and dissociation. They relate to our ability to plan, sequence tasks, keep track of time, and prioritise.

Many higher level brain processes are limited resources. If I’m living such a chaotic life that I need to use a lot of thought to plan hanging out my washing, that’s a lot of capacity being used up on tasks of daily living. Routines, structures, and rhythms are ways I can take those tasks out of intense intellectual activity and into habit, which is largely mindless and takes little mental energy. (which can help explain why some folks become very wedded to routines – if you have limited executive function your routines are your safe way of keeping life going)

It’s the same process that makes driving an intense intellectual process for a new driver, and something that can be done on autopilot for an experienced one. Autopilot frees up capacity for other tasks, or mental rest.

The impact of decision fatigue

Decision fatigue is also an important aspect of overwhelm, and one that burdens those of us in poverty much more than others because poverty involves constant trade offs – and these are the most mentally exhausting decisions we make, between two or more important things when we can’t have both (like food or medicine). There’s a great article here that unpacks this more as well as a lot of interesting research behind the ideas.

Sometimes the job is impossible

Overwhelm is often a response to a catch 22, or an impossible ask. Parenting through adversity of any kind often involves trying to accomplish very challenging tasks, such as supervising very young children while severely sleep deprived or ill, or trying to provide quality childcare and household management simultaneously,or meeting the physical, social, and emotional needs of several children of different ages/needs, at the same time.

I sometimes find it helpful to think of parenting as if it was a job, and thinking about what my union might be asking for when they want better, safer conditions. Do I need less tasks? More time? More skills? Rest? Support? All of the above, of course, but some weighed more than others, and some easier to find solutions to.

When I ask myself ‘What’s usual in thr paid versions of this role?’ sometimes the pressures and catch 22s emerge in a way I couldn’t see before. It can also help me to see and articulate difficult concepts such as I love being with my kids but I hate trying to create fun safe times together and also sort out all the washing. When everything merges together it can hard to figure out where things are actually working because it all feels awful.

‘All or nothing’ is a game you always lose

Another thing I’ve been finding helpful is to watch out for the ‘all or nothing’ mindset that kicks in when I’m overwhelmed. I know I need a break and I’m dreaming longingly of the weeks away on camp, but turn down the opportunity to have ten minutes to myself because frankly, what’s the point.

I have been finding it difficult to make ‘wild time’ since the kids came along. I miss my long late nights writing poetry, driving under stars, and sitting by the sea. For the last month I’ve experimented with 10 minutes by myself in the bedroom each night, with candles and my journal. Part of me hates this – where’s the spontanety? The stars overhead? The long hours? How can wildness be scheduled?

That part is right, it’s not the same.

And yet, it’s better than not doing it at all. It’s still a candle, a bone pen, a sacred space. It might be a snack instead of a full meal, but it still nourishes my soul. And a nourished soul speaks its needs louder, is more playful, resilient, and certain. It keeps seeking a heartful and passionate life. 5 minutes of painting is better than not touching the brushes for 5 years because you don’t have the time.

‘Freeze’ is a type of threat response that looks like overwhelm

I’ve found helpful with overwhelm to understand what scares me. This is much harder than it sounds. Sometimes I know I’m scared, sometimes I just get sick, or develop new pain or symptoms. As someone with childhood trauma I have the common but deeply frustrating experience of sometimes learning about my feelings through problems with my body and health. This means having to interpret the myriad of random symbolic issues that turn up. It can be a slow and frustrating process.

Other times I’m well aware I’m stressed, panicked, frozen, blocked. But I often have little idea why or how to get past it. Why is it that some days emails make me freeze and are impossible to reply to? I’m sitting at my desk in tears, humiliated and full of frustration and self loathing, but I cannot make myself do the un-doable task. We’ve all heard of flight and fight but are less familiar with freeze. If you are scared and don’t feel up to a task you are facing, some of us freeze and shut down.

Overwhelm can be a response to abuse

Not being able to think straight, remember, plan, or use higher mental facilities around an abusive person has long been recognised as a common problem for people being harmed. Making plans away from them is often essential because deciding what to in the moment can be impossible. There nothing wrong with you and it’s not unusual

It’s also not uncommon when the abuse is internal. For example, if I’ve often used a ‘stick’ to motivate myself with, forcing compliance even when I’m frightened, tired, or overwhelmed, using meanness and bullying to push myself through hard tasks, I’ve set this scenario up. Overwhelm at some point is as inevitable as a plant wilting without water.

Empathy is restorative

Making safe spaces to deeply listen and empathise with myself has been crucial. I’ve been working with an art therapist on this, instead of trying to push through or problem solve, instead to deeply and non judgementally listen. It’s harder than it sounds!

Deliberately seek the opposite

There are many opposites of overwhelmed such as calm, content, flow state, and confident. Some of them will resonate as more important to you than others, and you can explore more about those ones.

For me one of the biggest costs of overwhelm is in my confidence, so a side project that’s developed out of this one has been: what builds my confidence? I’m finding resources like this TED talk insightful. Repetition builds confidence which is useful to be aware of given how often I work at edge of skill, seduced by the appeal of a challenge. I adore challenges but I’m also anxious, vulnerable to imposter syndrome, and discouraged by failure and rejection. Learning to pull back on the challenges a little and build on more successes is helping greatly. Intentionally working to reduce my overwhelm this way has been incredibly helpful for me.

If you are struggling with overwhekm or care about someone who is, take heart. I hope there’s been some useful food for thought here. Our interdependence is invaluable in situations like this. Someone we can swap scary tasks like booking each other’s dentist appointments. Sometimes the one with more executive function can help break down a task or sequence a series of goals for someone struggling. Many articulate people with these challenges are sharing their strategies so others can borrow and build on them. You can tweak and change and develop things so that the overwhelm eases and you can think again. Best wishes.

TACSI Project: Chronic illness research

I’ve started a new project! This one is with TACSI, as a peer researcher, drawing on my lived experience of chronic illness. I’ll be conducting interviews, writing reports, and participating in the co-design process over the next few months.

If you meet the criteria above, please consider reaching out. All the interviewers are peers with lived experience and pretty amazing folks. I’m really pleased to be on board, TACSI have a fantastic reputation and I’m a long time admirer of their work – check out some of their other projects here.

Gender, diversity, and health

Recently in my public health studies, I was asked to explore some ways in which gender has an impact on health. Here’s some of my thoughts:

Experiences, health conditions, or personal identity that deviate from cultural gender norms can expose people to considerable health risks. Stigma, rejection and/or victimisation from family, peers, and community, and lack of access to resources such as education, work, and medical care, each compound in a vicious cycle for many people. As a result, they then face all the health risks of people exposed to unemployment, loneliness, poverty, mental illness, and so on.

There’s a range of ways people can violate gender norms. The norms themselves vary from culture to culture and at different historical times. Cultures are more flexible about some variations and more rigid about others. Some cultures have more overlap between qualities seen as ‘male’ and those seen as ‘female’, and the value placed on each varies. Many cultures have third gender, transgender, both gender and other options. When gender is a rigid organising principle it often determines opportunities, risks, and the power permitted in various life spheres.

In many cultures ‘female’ identified skills, roles, and behaviours are associated with less power in their personal and political lives, less access to the market economy, and are seen as less essential. Some cultures (such as ours) permit women to identify or behave in ways seen as ‘male’ more readily than the reverse because of this disparity. So it is now largely acceptable for girls to wear trousers, while boys wearing dresses/skirts/kilts is a source of controversy.

Women are more likely to operate in a gift/barter economy alongside the men in their lives, performing more unpaid work such as child raising, care giving for sick and elderly, housekeeping. When women are employed they are more often part time and unemployed, and more often working in the lower paid ‘welfare workforce’ using ‘traditionally female skills’ such as child care and support work. They are more vulnerable to poverty, domestic abuse, depression, homelessness, and lack of control over their bodies and choices.

In such an arrangement, men are less socially connected, have more options for education and wealth without having to choose between paid work and having children, and are less likely to participate in unpaid work. They are more vulnerable to loneliness (particularly once retired), less likely to seek support, slower to access health care particularly in matters that contradict ‘male’ stereotypes such as for concerns about virility or mental health, more likely to be assaulted by other men, and much more likely to kill themselves.

The health risks and vulnerabilities are considerably higher for those who do not or cannot fit this binary. Binary transgender people (those who were identified as male at birth but experience themselves as female, and vice versa) for example are at much higher risks of suicide, violence from strangers and family, rejection, homelessness, mental illness, and unemployment. Non-binary people (who identify as agender, gender fluid, both genders, multiple, and so on) are likewise disadvantaged. People who are attracted to their own gender are often also the recipients of social rejection and stigma as attraction to the ‘opposite’ gender is often a key aspect of the gender norms: ‘manly men’ are ‘supposed’ to be attracted to women, not men, for example. Same sex attraction violate gender segregation norms that presume same sex spaces are free from attraction. People who identify as the gender they were assigned at birth but who diverge from it in choices such as career, interests, or appearance also face risks.

Intersex people and those with hormone variations and disorders can experience severe medical trauma within health services that seek to ‘normalise’ them and fit them back into a gender binary they may not identify with.

Many of the groups already experiencing some other form of disadvantage are more represented in gender diverse communities, such as autistic people. Experiencing more than one form of diversity such as being disabled and queer, or indigenous and queer puts people at much higher risk due each community not understanding the other. For example for many years ‘bisexual privilege’ was spoken of with the assumption that being able to blend in and ‘look straight’ gave bisexual people an advantage over monosexual queer people (lesbians and gay men) who were constantly dealing with the stress and risks of being outed. More research suggests the opposite, that the stress of being invisible and feeling unwelcome at times within both straight and queer communities seems to be the cause of the much higher rates of physical and mental illnesses suffered by bisexuals than straight or queer monosexuals. Bisexuals who are in same sex relationships and are validated as queer face fewer health risks than those in binary relationships who are usually assumed to be straight.

This suggests that not only does each gender experience health risks differently, but some forms of divergence from gender norms are associated with greater risks than others. Some resources are safer and more accessible for some forms of ‘validated diversity’ and may be hostile or harmful to others who are divergent in other ways. There is for example, conflict at times between binary and non binary trans people about the legitimacy of their identity and how they are perceived by the wider community.

A final group who face severe health risks due to gender are often forgotten about. In the book ‘Dead Boys Don’t Dance’, a study found that suicide rates were higher for queer boys than straight boys. But the highest rates of all were in a largely unstudied subgroup – boys who had been perceived as and labelled by their peers as gay, but who did not themselves identify that way. These straight boys experienced all the risks and rejection from the straight community suffered by queer boys, and also lacked the protection of a sense of engagement and belonging with the queer community. Their invisibility, misidentification, and lack of peers was frequently a lethal combination.

So when we talk about gender and health, the costs of a rigid gender binary, norms, roles, we are talking about costs for all these people. Different levels of risk and types of vulnerability, but no one escapes a troubling cost to losing access to some aspects of what it is to be human and what we need in order to thrive. There’s no winners in this list,but some of the people paying the highest prices are also the most invisible and overlooked in conversions about gender and health. We can do better.

Ink Painting: Flight

I have greatly enjoyed creating in a range of other mediums lately; white ink over black, watercolours, even posca pens. But there’s something deeply satisfying about coming home to my teal ink paintings. They are my oldest and most familiar medium, started back in the days when I could only afford one colour of ink, a fountain pen, and a single size 6 brush.

When I sit down with my ink, I don’t know what I’m going to create before I start. I create the opportunity and something emerges. It’s an incredibly precious process for me, a kind of therapy. I love that spark, the uncertainty, the sense of not being in control and planning it out but rather, letting go and allowing space for what comes. It’s reflective and magical and sometimes extremely painful, depending on how safe I feel and how well I can process what comes. Sometimes nightmare images take me more than 6 months before I can look at them. More rarely, I connect with the work right away. Often they tell me than one story and I learn more about them over time or find different stories in them. I usually work at night, often by moonlight or candlelight, in a space full of poetry, a kind of altered state. Sometimes I can see parts of the artwork in the white paper as I begin, not a true hallucination, but yet real enough to trace the path.

‘Flight’ builds on a theme about wings that was present in my work back was I was 16 and used to dream of myself walking alone in school with vast useless black wings trailing behind me. Too freak to fit in, but not freak enough to fly.

They remerged at points throughout my life, such as when I gave birth.

I’ve been exploring my giftedness lately, what it means to not be neurotypical but function differently in ways there’s almost no research on for adult populations. It’s taken me a long time to own it and acknowledge how much it impacts my life. Unlike other differences such as my chronic illness, speaking about being gifted brings with it a taint of bragging and a memory of making others feel threatened and rejecting me. It’s vastly misunderstood and surprisingly vulnerable.

There’s little to guide someone struggling the way I do. Speaking to a gifted specialist recently I asked about the adult population, where can I learn from others who struggle? Ah, she said, there isn’t one. Gifted adults who succeed don’t come to see psychologists. Gifted adults who struggle usually assume their struggles prove they were not gifted after all. We know almost nothing about the needs and best supports of the gifted struggling adult.

We know what puts gifted kids at higher risk, such as not having friends or peers, not being academically challenged and getting used to the feeling of being a student who must learn, bullying, perfectionism, performance anxiety, feeling valued only for their grades and skills… We know they are often emotionally intense, vulnerable to existential crises very young, sensitive, and asynchronous in development. But we don’t know much about how to reverse harm or support adults to thrive. I’m trying to figure out that pathway.

Wings, useless, broken, or bound emerge as a metaphor for thwarted desire and unrealised capacity.

I’m glad of my strange, wild art. It was important to me to protect it from college and other artists and the homogenisation that happens in exposure to others. It’s not the only way to make art, even for me, not the best or holiest. At is made in many ways and meets many different needs, it’s a form of mindfulness and intense observation, a emotional catharsis, a complex development of artisanal skill, a way to play, and more besides. All are real. I was speaking with a lovely artist recently who is going through something tough. I mentioned that I explore terrible pain at times in my art and suggested they could do the same. They gave me such a brief hunted look, a flash of anxiety and an absolutely closed door that I understood immediately: art is their happy place, where the joyful and whimsical live. It would be a kind of sacrilege to take their darkness into it. For me, I adore darkness and love in art, all the notes of the song and colours to paint with. Lightest to darkest pitch. It’s what feels authentic to me and it heals something in me that otherwise merely bleeds.

Podcast: Keeping Mum

I’m excited to share this project in which I played a small role.

This beautiful podcast sensitively explores the largely untold story of the experience of children of LGBTIQ parents. It’s a lovely interview of the now adult child of a lesbian mother who navigated raising her family in a conservative community. The marriage equality plebiscite in Australia last year often aired concerns about the effect on children of being raised by queer parents. While there’s excellent research that shows these families are just as safe and nurturing, it’s also helpful to hear personal experiences and accounts.

Produced by Suzanne Reece who conceived the idea, conducted the interviews, edited, and created the sound scape.

I provided a voice over for Suzanne’s poem, some of the background chatter, and the illustration.

First aired on Radio Adelaide, you can find ‘Keeping Mum’ here. Please feel welcome to share it.

Parenting with Trauma

Having our whole family sick together is an exercise in the logistics of rationing and portioning a tiny amount of energy to extract the maximum benefit. If I take her for an hour late tonight, then you do the morning, I’ll get you a nap at noon then you take her to the park for two hours so I can work on my assignment… The shifting priorities of dishes, doctors, meals, laundry, and mental health. It’s considerably more exhausting than being sick without kids, largely because of the difficulty of getting enough sleep to properly recover.

Monday Poppy and I went into the city. Rose had important appointments and Poppy was full of restless toddler energy. We had an argument on the bus about her not biting me which concluded with her screaming while strapped into her pram and me not making eye contact with a bus load of strangers. She got her own back by refusing to fall asleep for her afternoon nap. Usually she’ll snuggle down in her ‘cave’ made by covering the pram with a cloth, and knock off. That day she leaned as far forwards as her pram seatbelt would let her to fight sleep. 4 times she gently drifted off anyway as I paced around Rundle Mall rocking and circling the buskers. Each time she’d slip sideways as sleep relaxed her, clonking her head on the frame of the pram and waking up with a howl. Gently tipping the pram up evoked rage rather than sleep, and the fifth time she started to fall asleep I stopped and tried to gently settle her back which cued 20 minutes of hysteria.

I thought she might fall asleep in the art gallery but unfortunately that was the end of the whole idea. She talked to the other patrons, wanted to know all about the art, and once we found the kid’s studio space spent a happy hour cutting a sheet of paper into very tiny pieces.

The studio was set up to invite self portraits, with mirrors and oil pastels. This was mine:

I was glad of the space, it’s the most at home I’ve felt in the gallery.

I’ve realized that PTSD has interrupted our usually very calm parenting approach. Kids this age can be intense, they have huge feelings, test boundaries, and have way more energy than seems sensible. Poppy is fearless, explorative, passionate, creative, and stubborn. Generally Rose and I navigate these traits patiently and with appreciation of their positive aspects. But when she hurts us deliberately we’ve both struggled and the conflict has been charged and difficult to resolve. We’ve been worried about what it means and stressed by our own responses. I in particular lose patience and get angry, but Poppy isn’t easily intimidated which leaves me in a bind where I either behave in more frightening ways until she’s cowed and takes me seriously, or I find another way of approaching this. It speaks to the heart of parenting approaches to obedience and discipline. Do children follow instructions because they are frightened of us, or of the consequences? Or because they are connected to us and trust us? Is it appropriate to scare your child? If so, when and how much? Are boundaries about anger or love? Is breaking the rules or pushing the boundaries about immaturity, defiance, conflicting needs, forgetfulness (it’s easy to over estimate the memory capacity of a small child), or something else?

I’ve been starting to do a bit more reading on parenting her age group and it occurred to me that Rose and I are generally excellent at not taking difficult behavior personally, setting boundaries with warmth, and redirecting troubling behaviors. So when Poppy was getting into constant trouble for climbing furniture in the house, she now has a climbing frame outside for her to monkey around on. But when she hurts us there’s no such framing. We see no positive aspect to such behavior, no legitimate need looking for expression. We talk instead about her being mean, we privately discuss her sensitivity to our stress, her restlessness, her trying to get our attention. We’re troubled by a normal child behavior and framing it as lack of empathy. It’s triggering, evoking memories of being hurt by others and we both move into threat responses. Rose tends to freeze and withdraw, I get angry.

It occurred to me recently we’re misframing the behavior due to our histories. Most children this age want to roughhouse. Wrestling and tumbling and play fighting is a normal developmental behavior. Engaged with care it’s a place for learning about how to hold back and not hurt each other, how to apologise and caretake when accidents happen, and it satisfies the touch hunger and intense energy of very young children. Learning how to wind down into calmness following rough play is a key part of regulating such excitable and energetic kids.

Last night when Poppy started to get rough with Rose who was crashed out on the couch with a migraine, I didn’t get charged. I chose to see her inappropriate behavior as a need for rough housing and set a boundary with patience rather than frustration. I told her Mamma was sick and could only have gentle play around her. When Poppy kept being rough I removed her to the bedroom not as punishment but as an appropriate location for rough play. I gently with her permission threw her onto the bed, threw a big stuffed lion at her and told her this was where the fierce and grouchy creatures play. She was thrilled. She ran growling at me to the edge of the bed, waited for me to put my hand in the centre of her chest, then braced herself for me to gently push her back, screaming with laughter.

Later that night with Rose asleep and me exhausted on the couch with Poppy, she started to rough play again and I forbade her from getting on the couch with me. For the first time she was easily redirected into quiet play and spend a calm hour making complicated meals with her toy food instead.

There’s no problem with her empathy, Poppy is an incredibly affectionate and loving child. She’s not unusually aggressive or showing signs of attachment damage or deprivation. In mislabeling her normal needs as something that disturbed us, we introduced a charge into our relationship that she gravitated towards. Kids do this without knowing why, they can sense it and it’s irresistible. It’s why they do mad things like grin at an adult who’s already at the end of their rope and angry with them. They are still getting a sense of their own power in the world and what they can and can’t do. Navigating our own trauma as parents is about recognizing blind spots like this, paying attention to threat responses needlessly activated, and prioritizing basic needs like sleep, connection, and companionship so we function as best we can. For me at the moment on bad days I’m dealing with chronic irritability and low grade suicidality. Sleep deprivation and feeling isolated turn my world black. Over and over in a thousand little ways we choose safety together, celebrate freedom and autonomy, look for loving ways to speak about the unspeakable things, and link into the world around us. Without our wider networks of friends, family, therapists, without kids rooms in art galleries, and foodbank, and doctors who see trauma survivors rather than welfare bludgers, we couldn’t do this. But together there is so much strength, sufficient grace. Enough to let us all grow.

Community Mural in Development

At my birthday party last weekend, my friends started this mural with me. I’ve wanted to paint murals for a long time, and trying to think of something fun to host it seemed like a good idea. I bought a panel of marine ply, undercoated with Rustoleum, and we used house paint brushes and bulk size artist acrylics in a limited palette (blue, red, yellow, brown, and white). I mixed the colours people chose and gave a bit of instruction on using brushes but that was it. The design – children playing in a tumble of autumn leaves – I drew on freehand with a sharpie.

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Those who wanted to join in chose whichever part they liked and painted. It was cool to see people experimenting with textures and brush stroke styles. The limited colour range keeps it all cohesive despite many different hands, and the limited palette means all the colours relate well to each other. The only thing I’ve noticed so far is a tendency for not a lot of variation in value (darks and lights) which doesn’t matter so much in such a cheerful piece.

I was hoping to create something fun and heartfelt to display in our backyard. It will cheer up and add colour to the play area for Poppy, and remind me of my friends and family who’ve added to it. I know it’s often stressful to make art when you haven’t done it in a long time, so I wanted to make it feel safe and meditative. Creativity loves a bit of challenge, but too much is inhibiting and creates frustration. I also reassured folks that I will be going over the design when it’s finished and outlining everything so there was no need to worry about imperfect edges or the odd smudge. They really do add to the texture.

I have been doing some research in the local hardware store and I think for future murals I will consider buying exterior paint for the added UV protection to help it last. I’ve been making more artwork on board rather than canvas lately, which I prefer for indoor or outdoor larger scale artworks, so this was a fun way to explore that.

I’m looking forward to finishing this and fixing it in place. Probably another 2-3 arty afternoons will have it done, weather permitting.

My birthday was harrowing this year, I spent half of it crying and was horribly suicidal. I’m glad it’s behind me and I’m going to put some real thought into understanding how I can deal with it differently for next year. So far none of my approaches have been great.

But my favourite part of this was those small moments when I could see someone else disappearing into the art, the steady even brushing of paint, blending into paint. Those moments are a kind of meditation and they are precious. May we all have many more of them.