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

Jay is trapped in bed

We need urgent help

Image courtesy of Image by Николай Егошин from Pixabay
Image description: large house fiercely on fire in the night, guttered with the windows burned through

Context:

Updated list:

More details:

In Home Safety Issues:

  1. Raised by RN
  2. Raised by Support Worker
  3. Raised by Jay
  4. Verified by Occupational Therapist – pending

Current Status:

I need 2 staff 24/7 with Jay and there is nowhere in the present home for them to sleep, and no separate spaces for them to have downtime. Due to severe sensory issues they also need to be able eat away from Jay, as most food smells are highly distressing and many cause meltdown/shutdowns.

An occupational therapist visited yesterday morning for staff training with safe use of hoist. Could not proceed,  Jay was in too much pain and then went into meltdown due to overwhelm. OT has shut down use of hoist, shower chair, and commode because of the severe pain Jay is experiencing. Given we don’t know the cause of the pain, we are risking potential severe injury to them if we mobilize them with the hoist.

Jay spent the weekend in the local public hospital ED. We called an ambulance for them when their pain escalated into crisis with symptoms mimicing a heart attack. Jay has no ambulance cover – we have promised we will cover it with our donations fund. (THANKYOU ALL!) Edit – wow it turns out NSW has different rules around ambulances to SA and there will be no cost. Awesome! We really need to do something about that here where I live.

Jay was unable to get proper care or assessment in the ED despite everything their entire tried over the whole stay. And I mean EVERYTHING we tried – but that’s a story for another time.

His GP was booked for an urgent telehealth appt over 2 weeks ago but has never called. This is the GP who has not followed up on a highly vulnerable trans client who’s hormone shot is over a month overdue. Apparently this is pretty common for them – can’t even blame COVID19.

Trapped in bed

Trapped in bed at present without capacity to get into their wheelchair. Jay now needs 2 staff available 24/7 to enact pressure sore protocols (need to roll them every 4 hours and apply cream to skin) – we think – we can’t yet get anyone into the house to tell us! Jay’s skin has already thinned badly due to a long time trapped in bed while abandoned in their home – also a story for another time, but I can tell you it’s been a really bad year for Jay.

We urgently need a GP for a wide range of assessments and referrals related to chronic and severe neglect.

We also have immediate medical questions we are not qualified to answer and we need a GP or someone trained to guide us!

We need from a GP: Immediate:

  • We need covid tests for Jay and all staff. The ED Jay spent the weekend in was a hotspot for covid but refused to refer or administer tests or medically assess the support workers. This means we can’t take them into places where high risk residents are in lockdown. We need clearance to open housing options or to know housing options closed because we are now infected and risk killing the rest of the residents. 
  • We need medical assessment and advice of the risks of using the hoist to mobilize into the chair, vs feeding someone with severe dysphagia while lying down in bed. 
  • We need to assess, diagnose and treat the pain crisis or provide referrals to those who can.

We have managed to arrange:

  • 9 April disability specific physiotherapist for telehealth assessment.
  • 14th April we have booked trans friendly GP: should be able to provide script for hormone, we can then hire a nurse to administer. 

Jay reports a bad sore throat today and has been feeling constantly very hot then very cold for the last two days despite no fever on the thermometer. This lack of temperature regulation is very concerning given other health conditions. Jay reports severe neck and back pain, radiating down both arms, which is especially concerning because Jay is usually unable to feel pain even if it’s a really bad injury. We are all afraid something very bad is happening medically. We desperately need a disability GP with experience in spasticity – we are making calls and waiting to hear back. If you know anyone – please get in touch with us urgently, my phone is on 24/7.

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!

Looking for NDIS support workers

I need a couple of new folks on my teams, one in the Western Sydney Parklands/Mount Druitt area, and another in the Northern Adelaide area. Both folks need people with integrity, disability and mental health experience, and who are taking the COVID-19 health and hygiene precautions super seriously.

Whether you are already working in the NDIS, run your own business, are new to the NDIS but experienced with disability and mental health, want to be subcontracted or employed, I’m pretty flexible. The model can be variable, it’s the person and capacity to learn that I’m focused on. Get in touch and lets see if you’re a good fit.

You will need to have or get a clearance for working with people with disability, full first aid training, medication handling training, and COVID-19 hygiene training (the last one is free and easy to arrange). Your own car is vastly preferred. Lived experience of disability, diversity, neurodiversity, and so on is preferred but not essential.

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.

Brutal and beautiful

It’s been in many ways one of the most brutal weeks we’ve had as a family. Rose and I have both been slogging through medical settings in terrible pain, Poppy needs some specialist care, Tonks the cat has needed the vet, and currently neither Rose nor I can drive due to our injuries. 3 weeks ago the sky was clear blue and all was well and suddenly this, all unrelated.

Life is frankly a serious PITA at times. We are getting slugged by expensive medical costs and the need for private surgeons and physio (My elbow is a mess and Rose’s knee) so we’ve shelved plans to bring home a lovely therapy bearded dragon for Rose, and are booking in vital appointments and doing all the admin needed to get some money back through Medicare/ health insurance etc or possibly covered by one of the various low or no interest loans out there for folks like us.

ID live stage photograph of Rebeltheshow, at the Adelaide Fringe, with a musician hanging upside down on a swing, balancing on his head, while playing a ukelale.

And yet, things are so, so good. People are helping us in a host of ways. Work continues to be excellent and something I love. Poppy and I swung in the hammock this evening, watching the light through the leaves of our mulberry tree. My home is clean and the garden is tended and Tonks the cat will be okay.

Last night Rose had to go through an awful procedure where they sedated her and stopped her breathing to relax her limbs enough to allow her frozen knee joint to be manually unlocked. I said goodbye and sat in a waiting room alone at 4am, sobbing on the phone to a friend, waiting to find out the outcome.

I remember kissing her forehead, the flash of her brown eyes: so beautiful, a hint of green in the outer iris, hazelnut brown and bright as golden timber in the centers. The pain so severe and enduring after 7 unbearable hours that she was desperate and shrugged aside the risks: anything to make it stop. I promise I’ll fight to come back to you, she told me. Be at peace I said, trust them, I know you will, I trust you.

It’s been a truly horrible week and yet my heart is so light and singing, singing I can’t contain it all. I think of Adelaide Writers Week last year, Jackie French talking about riding in the back of the ambulance where her husband was suffering a heart attack, noticing the beauty of the world around them. Telling us that no matter how dark things get there’s always beauty and we must look for it and be open to it.

My world today sings. Everything is brighter and more subtle, more beautiful and tender and lovely. I am in love with the world simply because Rose is still in it.

Ink Painting: Mother and child

Late last year I began this work after struggling through a day with Poppy when I was suffering unbearable depression and anxiety. We went to the museum in town together and she had a wonderful time. I felt like I couldn’t breathe and that her momentum was pulling me along while I tried not to drown.

I adore using UV inks to explore the idea of things that are hidden from sight or knowledge. That there are things that are only known in certain settings or visible in certain lights. This mothers movements make little sense until you can see the water flowing around her. Her context is invisible to most.

ID: line drawing with black ink of a mother and child holding hands. The child is walking along a low wall, balancing on top with arms outstretched. The mother is floating along behind, clutching her throat and watching the child. UV reactive ink shows a flowing river about the mother that is invisible in regular light.

Dearest Rose

Who is she? This woman I fell in love with seven years ago? We play supporting roles in each other’s lives. We wound each other in ways no one else could, deep in each other’s heart. We live in the brightest hopes and most painful broken dreams of each other. We are each the sun to the garden of the other. She speaks and my ear is a basket gathering petals. She is the child in the night, sleeping under a roof of stars and never entirely comfortable in a house again. She is the cat purring by my chest, full of love. She is a kite that flies out beyond my grasp, never entirely mine. Never tamed or owned or fitting within one role or name or way of being in the world.

She adores me. Her devotion is terrifying. She wraps her life around me, her hopes and belief in the future. She’s tender and generous. She forgives.

She hurts me. I live in the shadows of her wounds, in the debris left by everything that shattered and starved when she was excommunicated from a world where there was enough food, love, safety, and hope.

We dream new dreams. This is the first challenge after loss. Without new dreams there is no life.

We grieve. We learn how to say goodbye, how to let go and hold on. How to let go over and over again in a thousand little ways, like prayers for the future to be worth living for.

We own the scars. We find pride in them, we hold them tightly. We find the world ended but we are still here. We live with our mistakes and we do better.

We reach into the gap between dreams and reality and we do the work that bridges it. The hard and glorious work of being liberated from the past. To expunge the shame and agony. To let the memories burn down from raging fires, to coals, at last to cool ash.

She blesses me with her kisses and her silences, her fingers restless tapping my skin like rain on a window pane or a broad leaved plant. She holds my heart. All my world has been planted in her chest, birthed through her love. She gave me my daughters. She remembers the trees for me. She is my love.

Speaking about vulnerability

Well. So while I was wrestling alligators, fighting off polar bears, and manhandling monster trucks… I tripped and fell hard in my driveway. I’ve broken my left arm and bruised and sprained a few other things. For someone who has been busy with NDIS work driving to people’s homes this has been pretty inconvenient.

ID: smiling person with short brown hair, snuggled on a white couch under a faun blanket. Their left arm is wrapped in a thick white bandage.

It did mean however, that I was unusually available for a short notice speaking opportunity today. One of the reasons my work crosses several areas is to help me stay afloat when encountering difficulties like this- I’m not much use as a gym buddy for one client right now, but I don’t need my left arm working to talk about diversity and vulnerability.

It’s a precious thing to be offered the floor in a space like that, an expression of trust and hope that you’ll help people find the words for what needs to be said. I’m home now, exhausted, pleased, strangely sad in that indefinable ‘post event’ way. I know the real work starts after I walk out the door, the challenge of holding safe spaces and integrating complexity.

I find myself so moved by our common ground, the similarities in our hopes and struggles to be human whether we are the most fortunate or most destitute. And how unaware we are of each other, but where the blindness of the poor makes little difference to the lives of the powerful, unawareness for the powerful builds the walls that exclude and create so much needless suffering. The burden of responsibility is so much higher, and our need for allies in those spaces is so great. I’m glad to play a small part in humanising people to each other. Our work in that space will never be finished, but I believe each moment counts.

At the end of the day

Curled into bed at the end of the day with my little girl in my arms smelling sweetly of honey soap. My garden is growing wild in the darkness outside, full of seeds thriving and vines twisting and the ghosts of birds long since bones. The fan rattles on, talking to itself. Cats come and go. My bone pen calls to me like rain far away at sea or over the mountains, unheard but felt in some strange sense we have no name for. My Studio is a ship far out at sea with the lights still burning. My little girl radiates the soft warmth of a banked fire, embers safely glowing within her chest.

My work is good. It satisfies me, immensely. A parched place within is soaking in the long steady rains of over 2 months constant work and much more booked in ahead. I’m turning down many opportunities and focusing on my areas of strength and passion. The NDIS support worker is complex, challenging, taxing, subtle, and deeply fulfilling. I feel of use in the world and with the help of my business mentor I am starting to shape my business into a sustainable and enjoyable model, with a balance of creative and intense emotional work. My life is incredibly full.

Rose is out at Amanda Palmer, it was by far her turn and she needed the opportunity, the inspiration, connection, and compassion I’m sure she’ll find there. We both went too see There Will be no Intermission for our anniversary and it was stunning. Such raw honesty, brutal intensity, deft humor, and compassion. Amanda delivered something incredibly dark and beautiful.

Rose, my beloved, continues to wrestle with her old demons. She’s walking a hard road at times with horrendous anxiety. But she’s also stepping into her own work and volunteering opportunities as well as being Poppy’s primary carer. We are all learning how to grow plants from seed together, and she tends a small veggie patch I organised her for Christmas. The roses are stunning in bloom, by far the most luminous is Jude, the rose she chose the weekend I proposed in what seems like a hundred years ago. Sometimes our path is painful but there’s also so much tenderness in it. I’m so grateful to her for the joy and spark she brings to Poppy and I, her joy in the little things, her creativity and sense of adventure. She is utterly ernest in all things and so devoted. I’m hoping she was able to open her heart a little tonight and soak in something precious. She so deserves all the safe, inspiring, dark, raw, and soulful nights in the world.

Helping bush businesses after the fires

The fabulous folks I volunteer with at the Freelance Jungle have stepped up in their own unique way after the horrifying bushfires here in Australia. They’ve put together a new projected called Skills for the Bush, where self employed people from anywhere in the world can register to donate their skills and time to support a bushfire affected small business to recover and grow.

Read more about the great project on the Freelance Jungle blog post Freelancers Helping with Bushfire Recovery, or sign up through the Skills for the Bush survey.

I know many of us are already donating and supporting causes. I also know that many of us feel helpless in the face of the sheer scale of the disaster and how long support efforts will be needed. Participating can be powerful way to reduce the impact of vicarious trauma, so whether you are driving supplies for fruit bats, buying quality face masks to donate to fire fighters, or getting involved with the Skills for the Bush project, doing something sustainable and connecting benefits everyone. ❤

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. 

My Creative Inks & Paints Classes

I am thrilled to announce I’m working with my favourite community centre 19onGreen to offer this series of art classes “Creative Inks and Paints”.

They will be playful and low stress with an emphasis on diversity and inclusion such as LGBTIQA+ folks, people with disabilities or sensory needs, mental health, trauma, and people who can find creative things make them feel a bit anxious or emotional. Everyone is welcome, and invoices can be provided for folks who are using NDIS funds. You are welcome to bring a friend or support worker, please buy a ticket for them too as we are keeping the groups reasonably small. The venue is fully accessible with access toilets, parking on site or in the street, and nearby bus routes on Hawker St.

Image description: An open journal showing watercolors and ink illustrations of flowers and a dog in a loose style, with pencil and brush on top and a palette of rainbow watercolor pans and mixing tray on the right.

We’ll be using inks, paints, and prints and can contribute to or make our own handmade zines and books.

There’s no stupid questions and no one who is ‘not artistic enough’ to join in. Whether you’ve been painting for years but are curious about inks, or if you have never even touched a paint brush or fountain pen, you’re welcome.

  • First Saturday of the Month, starting on Feb 1st, through to June
  • 10am-12noon
  • Tickets to each class cost only $10, buy here or contact 19onGreen
  • You may attend any one, or all of them
  • Here are the Facebook events

Any questions feel welcome to contact me through sarah@di.org.au or Michael at 19onGreen via (08) 8408 1860. Please arrange all tickets and booking details through 19onGreen.

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.

Darkness and brightness both

Taking my little love to the pool in the hot weather, she runs before me splendid and energetic while I shadow her, watching for danger. She is everything I ever hoped for.

Both girls home, baking in my kitchen. My heart bursts with joy.

Away on holidays with Nana, who is too sick to stay. The big plans get put aside again and yet I know, how deeply I know, the mundane things are sacred. She brushes Poppy’s hair, we play a child’s board game together on the floor. When health is lost these are the things you dream of, to have enough strength in your arms to brush their hair.

Some mornings I wake to the feel of death and the memories of those I’ve loved. If I can find way back into my dreams I often wake later to a different, kinder world. Sometimes I find myself reaching for a sense of meaning and falling instead into a dark void. Each time I must weave my own answer, and each day the answer needed is new. My life slips through my hands in fretful hours.

There’s been such pleasure in my studies. My mind enjoys complexity and challenge. The health of groups is a topic well suited to me. I’ve learned many things that have been questions for a long time. I’m always asking questions about the nature of the world, of reality, what it is to be human. My life can be measured in my pursuit of understanding, what had emerged and from which sources. I find myself curious that in some ways public health is so ignored. We consult psychologists about the health of crowds when they spend very little time studying this. When you want to know why individuals behave as they do, they are excellent. When you want to understand why entire groups behave in certain ways, public health is invaluable. It embraces complexity, exploring the causes and the causes of the causes. Social determinants emerge and I find research to support many private theories and wisdom from lived experience. It’s incredibly validating in many respects. It provides the context I’ve been craving.

I’ve gained confidence and learned gradually how to not write to excess, to do only what is required. My marks are very high and I feel a thrill of accomplishment. I’ve been exploring my next study plans for months and have not yet settled on a solution. Pleasure is one thing, but viable work another. I remain perplexed by the challenge of what I can meaningfully and profitably turn my hand to.

I still wish to pursue my questions, to build frameworks and explore knowledge. I adore learning and even more so in the company of other learners. I have theories about psychosis and multiplicity I wish to develop and share. I know there’s such a need for training and teaching that’s complex and authentic, so that calls me. I’m still seeking more understanding of wildness, art, Narnia, poetry, safety, and why some things make us feel alive while others numb us and break our hearts.

I’ve started working with a business mentor I have great respect for. Gradually I’m untangling some of the knots that have bound me – the need for my work to be somehow unique and spectacular, to build it quickly, to find confidence despite crushing experiences and limited qualifications, to not work alone, to work in ways and places that use my skills and skirt my limitations. To have others set my pay and value my skills because my self loathing forbids me to set myself above the lowest paid and punishes me for ambition or self interest. The fog slowly clears and I find some possibilities emerging. I cannot tell how long the path is that lies before me, and I’m often silenced by my awareness that showing behind the scenes of this area reduces confidence in my capacity, that when I pull aside the curtain to show my doubt and humanity I do so in the terribly shiny setting of consultants and entrepreneurs who sparkle with confidence. Authenticity and public sharing have costs and limits I struggle at times to navigate. And yet, so much of my credibility is based not on my book knowledge but on my capacity to articulate things I’ve directly experienced, and synthesizer it with wider knowledge. And that includes the darkness, the self hate, the terrible blocks that keep us from things we dearly love. I’m not alone in this struggle and neither are any of you. Struggling is part of being human.

In therapy I’m working on self compassion, an extraordinary challenge for someone deeply wedded to self loathing. I pick apart old journals and blog posts, looking for threads and connections. Somehow it’s connected to my struggles with paid work in ways I don’t yet understand. I’ve been trapped here a long time and my struggles, hopes, and self hate have not freed me. I’m trying to face it with calm acceptance and find compassion for this unreachable dream and my own compulsion to keep reaching even though I fall every time.

When I let go of paid work I feel free, and then my sense of self and meaning fray and I start to free fall into despair. When I strive to grasp paid work I become broken by my obsession, working intense hours in impossible circumstances and exploiting rather than nourishing myself. So the path forwards becomes not one thing or the other. A medley of intention and distraction, a part time world of parenting and art and study and paid work and therapy. It is extremely painful, utterly confusing, and thrillingly wonderful all mixed in together.

I don’t have those answers yet but I love and I am loved, and I’ve found good company for the journey. My heart is a tangle thorn and my hands are shredded but my mouth is bright with kisses and my books comfort me when the world goes dark.

Studio Opening Success

My Studio Opening was delightful. Thank you to everyone who came, brought gifts, sent messages of support, or signed up as a philanthropist, I feel very loved. It was a pleasure to share my space and I’m delighted to hear it was inspiring for others creative pursuits too. There’s something incredibly special to me about studios and behind the scenes peeks into the home and birthplace of art. One guest is even looking into renting a space themselves, and there’s several lovely Christmas gifts safely on their way to new homes. The weather was bizarre but the cookies were delicious and the company even better. 💙

Image description: non binary person with short spike brown hair and teal lips smiling at the camera in front of art sketches and photos pegged on a string.

I’m about to leave for a week, when I get back I’ll create a walk through video and share a few special embellished prints I’ve been working on recently. I’ll also send my first philanthropist only email and start my gift lottery for these wonderful supporters. You folks are the best and I’m excited by what’s possible with your help.

Embroidery sampler

It’s been a glorious day. I’ve handed in my final large assignment for my grad cert in public health. We’ve passed our rent inspection. I took the day off and went to the zoo with my family. It’s the first day in about 6 weeks I haven’t woken up feeling hideously anxious. I’m happy.

Image description: a needlework project in progress. A multicolored bird embroidered using a range of stitches onto cream cotton. On the right is a pouch of sewing tools and threads, above that is paper with a sketch of the bird and names of the various stitch styles.

I’ve taken up embroidery again because I find it helps when my mental health is rough, and I’ve been grabbing onto everything that helps. Darling Rose is dealing with a lot of trauma stuff, which means I am too. My doctor put me on an antidepressant to try and reduce my anxiety, the starting process of which has been absolutely brutal with severe side effects including ironically enough severe panic attacks where my body goes into shock and chills. They are finally starting to ease off which is such a relief. I’m starting to embrace my life balance of part time work, part time study, and part time looking after my family – along with play and rest and hobbies and friends. Getting out of my obsessive focus on work is very difficult but so rewarding.

I’m absolutely thrilled that I’ll be graduating. I now have so many further education doors open to me and I want to do all of them. I’m taking my time deciding.

My week still contains holding the fort after trauma therapy, preparing for a family holiday, my studio opening, and face painting. I feel so relieved and joyful after every goal we nail. At some point I’ll finally empty my inbox again and all will be well with the world. In theory.

Embroidery is something I initially took up when very ill. I’ve loved doing it again, the little bird is a sampler of useful stitches to use as a guide for other projects. There’s a major art series I’d love to do one day in embroidery so honing my skills will help with that. Right now it feels like I’ve been battered on rough seas for weeks and I’m finally resting blissfully on an island in the sun. Soaking it in.

Studio Opening this Saturday

If you’re local, you’re welcome to visit my lovely art studio this Saturday 30th Nov, 10.30am – 12.30pm. Get your $5 ticket here, kids and philanthropists are free.

It’s extremely rare for me to invite folks into my precious creative space. It’s been a couple of years since my last studio opening, at my previous studio in the city.

I’ll have some lovely art work available to buy of course, but there’ll be no sales talk. It’s a celebration of my new venture over at Armchair Philanthropy. I have just set up my special mailing list for philanthropists and I can’t wait to send them the first message to say thankyou and share gifts and talk about the next project I’ll be working on.

Given it’s the silly season I think it will be a very intimate opening, so I’ll be happy to give art demonstrations, answer questions about my creative or community work, or just hang out together. You know me, I’m a ball of anxiety about selling my stuff but love to feel helpful, so come and talk to me.

There is a lift for those who need access help, but there is a small step to get in to the building itself at the front, through the art supply shop. Huge steps at the back! Let me know if you are concerned and I can send you a photo or short vid.

If you can’t make it but you’re keen, keep watching the blog or hop onto my mailing list. I’ll be sharing a little walk through video for all the readers from further afield. Don’t like you folks to miss out either, don’t worry.

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

She loves me

When Rose packs lunch for me, she sends with a little container with my tomato slices, carefully salted and ready to go on my sandwich so it won’t get soggy. I’m a very, very lucky person. 💜

Image description a sandwich with the top slice removed, showing ham, cucumber, and tomato slices. In the background out of focus is a blue lunchbox with yogurt and a banana.