Right now my world is divided into two groups. Those who believe hospitals are safe places, and those who know otherwise. 

So today when we were in a stand off with the doctors who had no handover, had read no notes, and were adamant than none of the carefully planned and negotiated trauma informed arrangements would be implemented, I held her hand very tight. I made them give her time to speak.  I backed her when she withdrew consent. 

When a doctor chased her withdrawing hand across her body, grabbing at her to put a line in for anaesthesia I removed his hand from her body. And when I requested trauma informed care protocols for her after they would make me leave – that if she withdrew consent by voice or by raising her hand they would stop, and I was sneered at impatiently and told – “of course that’s always how it’s done”, I felt in my body a rushing tide, waves of every time that’s ever failed. Every touch we ever tried to escape roared through me without sound, without a ripple on my skin, in the blackest night within me.

When they wheeled her away from me sedated, and closed the door between us, I found myself stranded there in the corridor.  I felt like a dog at a train station who’s beloved person had been conscripted away to war, far from protection and likely to be harmed. I stood with my back to the wall,  involuntarily listening for the sound of her voice, the sound of her cry. I stood there knowing they had said they would care for her, and knowing they lie. I stood there knowing what power looks like when it stands at the bedside of a woman naked and trembling. I could do nothing but commend her body into their hands. 

The nurse, the other person I had to tell to stop touching her without consent, walked past and looked at me with impatience and something like disgust. “There’s no point waiting here, you know they’re not going to let you into recovery.” I very quietly and carefully agreed that I knew that, my bones screaming down in the deeps.

There’s a terrifying defensiveness when trauma is mentioned,  it’s taken as a kind of slur, an insult to their trustworthiness.  Without any comprehension of what it is or what is needed they puff themselves up and demand “you can’t possibly need protecting from us,  how dare you! we are the good ones.” They are all the good ones, even the ones our nightmares are made out of.

I went back to her room to wait. The lights were unbearable. The TV running a children’s show that shrieked in my brain.  I went and quietly asked a nurse if there was a chapel or quiet room I could sit in.  She led me out of our ward,  into the ward adjacent,  down a long corridor and around to the “sacred space” that I went and sobbed in when I first confirmed that Hummingbird was dying and no one had been brave enough to tell her,  instead pretending she was recovering and going home, stealing her hopes for hospice, for a last drive home to her garden, for any of the palliative care resources, for the letters she had hoped to write and the goodbyes she had planned to say. 

Ah, I say.  Perhaps you could show me where the patient or family kitchen is? She walks me back to a room with a lock on the door.  We both look at the lock. “You’re not allowed in”. she tells me. Only the staff are. Ah I say.  Well in that case I guess I don’t really need to know where it is. She goes back to her station.

I go back to the room. I darn a sock for Little Bear. I keep my back to the wall and stay as far as I can from anyone who might touch me. I am a fox in a cage, seething and terrified. Exhausted and wired. Desperate and alone. Finally they return her. Maybe it will work, maybe it won’t. Maybe she’ll be home this week, maybe not. Maybe they’ll do another one in a different spot on her spine. It’s stopped raining out the window, but it takes hours for the sense of threat to ease. I am held together with love and pain and memory, wired shut.

Nurses and doctors flick in and out of the room like the little birds feeding at the shore line, retreating before the waves. I imagine the notes from today which will say something like “procedure successful,  unremarkable”. We walk entirely different worlds here in mirror of each other. They are confident we are safe and we know we are not. They do not understand it, their bones do not scream. 

She’s back in the empty, lonely room to wait out the night without us. The sheets show no tear stains. There’s no bruises on her skin. No trace, no evidence, except that flinch everytime the door handle turns. It doesn’t matter. It’s unspeakable. Tomorrow it may well happen all over again. The carousel spins on and the carnival continues and no one is counting the screams. I take her hand and behind my teeth is more rage than I can bear, more heartbreak than I can breathe through. They do not see what they take away.  I hold her hand. They do not see. I hold on. We breathe together in the dark. 

Raising young children can be a strange kind of loneliness. I am not isolated the way I once was, where days might pass before I realised I had not spoken. I run into a hundred people across the day and see so many lives through the screen on my phone. But so much of it feels brief and disconnected, a performance at daycare, at the chemist, on the phone. I have felt very isolated with my precious ones, their strange needs and vulnerabilities and my own keeping us in a place where I’m always busy and always surrounded by people but always in a role, often far away in my mind planning and problem solving and managing, rarely as present or connected as I hoped to be.

I remember my parents when I was young, the grinding poverty and the exhausting search for viable work. I recall how skilled they were, how dedicated and devoted, and how much it occupied every moment. Work stole my father from me, a little more every year, like a tide going out. I was always chasing and always grieving.

I have signed up to Inklings, a somewhat controversial program intended to support communication and connection between parents and young ones. As with many such things I strongly suspect it’s highly dependent on the relationship between the person delivering it and the parent. I like my person, I feel comfortable with her. I watch Calliope and notice things I haven’t seen before. I gear away from solving all the problems and towards being present. I put music on and simply sit with her and Little Bear, in the rare luxury of cuddles I don’t have to rush away from to do tasks and get to appointments on time.

I was diagnosed with burnout again last year, after a series of crises. Trying to understand burnout through a group lens, through the roles and ways we connect, the culture we create, the values we espouse, and then struggle to live up to. I have been thinking a lot about burnout recovery, and about these tiny moments, micro moments, my speech path calls them, of connection or creativity or rest or pleasure. It’s pausing dinner for just a minute to respond to the child showing me something. It’s holding Nightingale for just a moment before the rush of the morning. It’s watching the mint grow.

I didn’t sleep well last night, despite my exhaustion. Nightingale is in hospital, Calliope is suddenly night weaning, and I’m trying to hold the sky up as best I can. It’s a kind of race, trying to catch the crucial things – ordering more of the essential medication before it runs out, keeping the fridge stocked, remembering to cancel that appt I can’t make, closing the loop on a difficult conversation with a client. It’s often my worst scenario – simultaneous inputs across multiple domains. My brain doesn’t deal with that elegantly, I will simply meltdown however hard I’m trying.

But I’ve been thinking a lot about culture, about how to move away from a culture that accidentally creates burnout, that pushes through and puts needs on the backseat, and links care and altruism to exploitation and exhaustion. I’ve been thinking a lot about workplace culture and how to better name and communicate mine. I’ve been working a lot on our document suite about who we are and how we do things, and why we do them that way. I’ve been thinking about cultures that assume failure and build in fail-safes and protections, rather than requiring perfection. It’s occurred to me that, as I’ve transitioned from an unemployed nobody who couldn’t get a job, through a series of often highly challenging and exploitative working arrangements, through to running my own business and employing a small team, that I’ve stumbled into gaps. I went chasing information on how to be a good boss with disabilities and struggled to find anything. I fell into dilemmas such as – I want to model vulnerability and authenticity, but by the nature of the power I hold in this situation, my own vulnerability lands differently – it can destabilise and stress a team who rely on me for their livelihood, and it can make them less likely to be vulnerable if they’re worried about leaning on me. These are not easy dilemmas to manage.

I have recently come to realise that one of the most destructive elements of the role I have created for myself is that I have built the values of trauma-informed care into every other role except mine. It’s explicitly part of how we engage with clients and how I support staff. It has never been applied to me. I’ve never even heard of the idea that someone with the power, someone at the top is also at risk of trauma. In my case, the gulf between my values and what I actually have power over can kill me. The gap between my aspiration and capacity can be lethal. I have some power, but not all power. I still have to function in devastatingly broken systems, in abusive power structures and the grinding harm of late-stage capitalism. I cannot make things as I wish them to be. I am often heavily constrained from doing good in the world by the very systems set up to protect people. Staff ask for accommodations that I am forbidden to provide. The constraints are also internal. I wish to be someone I cannot always be. I fall short. I have to find ways to embody my values there too, how to be humble, honest, and authentic. How to permit myself the grace I offer to others. I have to accept the imperfections of my own work, and avoid the false promises of purity in favour of the dirtier and more humble path of imperfect learning. I have found this notion of a trauma-informed approach to being the boss a liberating perspective. Gradually, I begin to fold myself into the same category as my staff, deserving of the same protections and the same care. Not pretending that my role or my vulnerability is the same as theirs, but acknowledging it is still real. Power is only one protective factor, against the scars of my lived experience, against the survivor’s guilt, against the constraints of my capacity and my circumstances; there are still rocks to be dashed against and shipwrecked upon.

I woke up at 4am. Calliope has started to settle at nights now, a week away from Nightingale who is in hospital. Poppy is with Rose. We muddle through. I wilt under the bright hospital lights, the sensory assault, the fatigue and demands and painful lapses of good medical care. I crash, and rest, and pick myself up and keep going. I couldn’t sleep but I could light a black candle and listen to the rain. Fold myself under warm blankets and nestle next to Calliope. Think of Nightingale, far from home. Think of the painting waiting for me. The small moments of soul that I am strewing across my path like flower petals. The tiny lamps that light my way home.

I caught up with one of my best friends today,  and amoung the mayhem we both caught up on a little mending.  I fixed holes in pants for Poppy, Little Bear,  and patched this onesie for Calliope. It was precious to get time to use my hands,  precious to just be with a good friend, and precious to help the kids have a good day.  In between the fog and rain they played in the yard, and crafted with play dough or polymer clay for the older ones. 

Learning to let go of what I thought this would look like, of the dream that chokes me,  and see what is here, right in front of me.  The light falls cold and soft, the needle draws the torn edges back together, the children call my name. 

I was once explaining my role to a group – that my job here was to listen to understand – that if I could explain their opinions or experiences back to them accurately, I was doing it right, and then to make sure it was heard back at whatever head office had hired me. “Oh, you’re a nerd translator!” they responded. I was thrilled. What a fabulous description of a role that can otherwise sound incredibly simple and dry.

Lived experience research can open doors closed to people outside the community. It can shape the language of the questions. It can work from some level of shared experience and understanding. I find elegant lessons and dovetails with other passions of mine – narrative therapy approaches remind us that the way we frame the questions constrains or liberates the possible answers. Open dialogue tells us that consensus can collapse nuance, that there’s value in permitting polyphony.

You might think the lengthy travel would mean I slept well, but instead I was over-preparing for the work, and developing wild hives to something in my motel room. I’ve started using the sunflower lanyard in airports, on the few occasions I fly, to signal I have an invisible disability. It has made life a lot easier. I find flying physically pretty hard and the sensory stress is also high. I had a whole toolkit ready after my trip to Prague last year for the World Hearing Voices Congress; everything is a lot easier compared to that incredibly long flight. I promised myself during it that absolutely no more often than once a year was this an option. I was thrilled when the 2026 congress was going to be hosted in Australia, and now that it’s been moved to Copenhagen, which I’m confident is delightful, I’ve been sulking and quietly hiding away from it for a little while, because I just can’t manage that trip again yet. I wish I could sleep on planes, but it’s rare. Trains are a different matter! Delightful to sleep in. Cars I can pass out in. Planes are tiny itchy boxes of suppressed needs to stretch, flex, lie down, and fully breathe in. But also, how beautiful, flying over the silvery water and NSW with all the rivers and dams and at this time of year, the vivid green rolling hills. Finding quirky little spots to eat in. I’m pretty lucky.

It was hard to go. Nightingale is not well, 3 of the four kids are having a hard time. It’s hard to predict the timing on these things and this one turned out pretty rough. I’m not coming home refreshed and ready for the challenge, I’m coming home pumped full of antihistamines, sleep deprived, and looking forward to my own bed, my own food, and snuggling my family. I’m glad we’ve done so much work on what my own access needs are, what helps make it possible for me to show up and use these skills. It’s strange wearing the lanyard and noticing how people treat me differently, feeling myself moulding into that role in weird and uncomfortable ways. But also, when my bags got flagged going through security on the flight home and everything had to be unpacked because my lovely heavy metal fidgets were showing up on the xray as concerning, and the person looking at them didn’t know what they were, the lanyard gave me the benefit of the doubt while someone else came over and explained what fidgets are. The entire plan had boarded by the time I was free to dash off to it which was wildly unsettling but all was well. I was able to hold the spaces I wanted to hold, Nightingale held the sky up at home, and I’m heading back now having rekindled a small welcome fire.

I love my client work and deeply value my NDIS business but I’ve also been horribly restricted and I’ve terribly missed the opportunity to stretch all these other capacities. It’s very sweet to be starting to reconnect again.

Something shifts and things begin to grow again.  I planted three plants by this little fence,  two died over summer.  This little chap was accidentally harshly pruned during a yard clean up,  but has regenerated and finally grown large enough to put out a tendril and twine around the fence.  I release a breath I didn’t know I was holding.  Most of my plants died over summer,  but the mint survived,  so I’ve struck it and planted 4 more.  I’ve spent my life trying to learn this lesson – to mourn what dies and focus on what grows.  

On December 31 I trod on a branch in my garden.  A massive thorn broke through my shoe and lodged deep into my foot.  I couldn’t remove it and had to see a doctor for extraction.  It’s never quite healed.  I recently had a ultrasound that found broken fragments buried deep in my foot.  A surgeon has said it’s too risky to remove,  I’ll have to wait until my body can break it down.  Metaphors abound. I can still walk, but in the evenings I limp a little as the foot swells and hurts.  There’s nothing to do with the pain but be patient.  In the meantime,  a friend has bright me a thornless lemon tree to replace my thorny menace. Sometime I’ll get around to finding it a new home and planting it. 

For my birthday this year I started another community art mural.  Little Bear loves sea creatures,  especially whales,  so it’s an Orca in a wild ocean.  Today I stole some time to paint a little more.  It’s so peaceful.  I miss my studio but not having one or having one does very little to my actual arts practice.  It’s never been the barrier. 

My book has been calling to me.  So much death lately makes you think about legacy and hope.  Nightingale keeps bringing it up,  gently,  persistently, as one of biggest impacts we could have on the most people out there looking for hope.  So today I opened up a box of books about multiplicity and DID and plurality and gleefully restocked my book shelf.  I’ve gone back over my old structure notes,  my old Multiplicity Project plans,  thought about interviews and poems and diversity. 

Then I lit two black candles and took a bath and let it all percolate and swirl around the back of my brain.  So much change lately.  So much grief,  so much pain and fear in the disability sector here with the massive changes proposed to the ndis, the fuel crisis,  the cost of living crisis.  Much of my attention is rightfully on my business and the wellbeing of my clients and staff.  But also this morning I put my phone out of reach and spent 3 hours playing with my youngest two children and it was sweetness.  I watched the night fall as I painted into shadows and I could feel my soul settle lightly in my ribs like a vast,  ephemeral,  tattered bird.  Like the forgotten beasts of Eld. Like the heartbeat of the child who died inside of me and who I carry always. 

I curled in the dark on the bath and the wilds unfurled outside my windrow.  The places beyond the maps where so many people are struggling,  hoping, and struggling with stories of brokenness that net and bind them. The book begins to breathe again.  I begin to breathe again. 

She got cancer. I was not afraid of the hospital. I took Poppy, every couple of days. I shaved her hair. I rubbed her feet. I listened to her frustration. When she tried to start a blog but was too exhausted to think straight, I held her hand. I haven’t had cancer, but I’ve been there. I know what it is to struggle to find grace among the overwhelming grief of illness. We talked about death. She told me how overwhelming it was to have people visiting and crying. I cried in the carpark. I cried in bed at night, or in the shower. We showed up. It was very small and very simple and it changed everything. I sat with her once in the ICU and read Bradbury’s Dandelion Wine to her. We thought she might die that night. I wept silently behind the book. She found she could trust me.

I was still writing the blog then. I had a sense of authority over my own voice. I was sharing intimately and at some point she started reading it. She started to see me differently. One day she brought me a babushka doll from her travels, a nod to multiplicity. We were having silent conversations neither of us knew how to put into words. We grew closer. She visited during some really hard times and quietly left cash behind her that I greatfully spent on medications and groceries. She took Poppy for afternoons, did painting and baking together. When Poppy developed a passion for unusual or rare lollies she instituted ‘Snack Attack’ where they went and sampled confectionary from other countries.

We played card games together. She planned her new home. We talked about chronic illness, fluctuating capacity, raising children, trauma recovery, making the best of where you found yourself. She excelled at that. I was more inclined to tilt at windmills. Rifts remained. She didn’t attend my birthdays, my wedding, my children’s parties. She went away for Christmases so she didn’t have to find out if we would visit or not. She was blunt. She was persistent. She reached out, shared memes and articles and artworks and waited to catch up while my life become more complicated and busy. She left a basket of goodies at our door when we moved house. She gave strange gifts of random things she found clearing out her shed. She gave thoughtful gifts like the green velvet gloves she brought me back from her visit to Rome. When we caught up there was a trust and an honesty I valued deeply. We had seen each other in raw places.

She called me to hospital and Nightingale held the fort so I could visit alone. I took oil to offer a massage, a book to read. She was happy to see me and I was happy to see her and it was easy to be close. I was so glad to be called and so glad to be able to respond and the connection made my heart sing. I rubbed her back. We talked about cancer and health and sickness and children and death and gardens. I stayed as long as I could. She was strong.

She apologised to me once, after chemo had blasted her health. She told me she used to think I was so rude, the way I would cancel things on the day, or try to make plans last minute. She hadn’t understood what it was to be chronically ill, to not know how much energy you’d have or how badly you would sleep or how much pain you might be in. She said she was that person now, trying to explain to her friends that she did want to catch up, but today was a bad day. I hugged her. She gave me her carrot cake recipe.

She asked me to come to the hospital again. Something is wrong and I don’t understand what’s going on. You understand hospitals, I need you to come and make sense of it. I came the next day. She looked like she was dying. She knew she was, but the doctors were telling her she was better and could go home. She was confused. I helped her find the truth. It happened fast. I came home raging with grief. I showed up. I did everything I could to carry out her wishes. Sometimes as I’d walk past the foot of her bed, she would open her eyes and see me and I could see she recognised me still, could see the look in the them that said ‘I knew you’d be here.’ We talked about Poppy. She worried about Poppy. When things were hard she had kept a spare room available just in case Poppy might need it. I reassured her that Poppy has a whole community. They are loved. They are safe. We have them. I held her and she let me. I asked her what she needed and she was honest. We saw one another. She died.

My world is so much emptier. She was there so much, so much more than I’d realised. I felt guilty about all the things she’d missed out on, all the complications that made catching up in person hard. I miss her so badly. She cared and she loved us. That’s incredibly precious and increasingly rare. I am raising children with disabilities and complicated care needs and I am so isolated and often so lonely. She reached out over and over and I was safe and seen when we touched base. There’s a huge hole in my life where she was.

As the months pass, the pain is tempered with gratitude. I tried hard to see her for who she really was, even when we had no understanding. When she was stressful I set boundaries but I cared about her so I tried to make them warm rather than rejecting. We achieved something spectacular, a genuine relationship. A shared understanding. I was lucky to know her. We were lucky to have her as long as we did. She was precious and valued. She valued us. She loved us. We grew that together, tolerating being visible and vulnerable, tolerating the gaps and absences. It is always a part of me now, irreplaceable. She will live in us forever.

Barbara thrived in solitude and was wildly and wilfully independent. But she also valued connection where she could find it and I was glad to have her as a friend. I wish I knew what happened, where she ended up. I wish I’d been able to say goodbye.

My Life – Barbara Schaefer

Barbara loved my writing. She loved the wilds. She loved when I explored being out beyond the edges of my maps, trying to understand my experiences and fit words to my life.

I don’t write very much anymore. Occasionally the wilds emerge and every now and then it seems my worlds might collide and I might somehow inherit everything I’ve ever loved. And then something else comes back, a grief, a greyness of spirit, a soul weariness. I don’t dream of the wilds, I yearn for sleep and friendship and laughter and the energy to play with my children. The wilds and the writing and the raw sharing have become part of my former life. I find meaning in my work and motivation for my family. I read the same books on repeat. I cook the same meals. I fight my way through emails and track thousands of tasks. I have left the night behind and become entirely a creature of the day, devoted and exhausted. I feel deeply sad in a way I don’t put into words. I am known by so few now, there’s so few left who know me well enough or long enough to recall I was different once. I feel ashamed and guilty. I hide it. Barbara would have known, would have recognised the change. Might have had a kind word for me, without necessarily understanding my choices. She knew we don’t come back to the night through guilt.

She lived alone in a caravan. I have also lived alone in a caravan. She was desperately poor. I had tried to think of ways I might be able to employ her, not charity but a meaningful exchange. I am a reluctant employer and find the red tape sickening and overwhelming. I never told her about the idea, I couldn’t find anyone to help me make sure it would work. I hope she had enough at the end.

She came to understand her neurodivergence late, as I have. She was complicated and contrary and at times confusing.

She was profoundly interested in meaning and justice and the rich inner world that couldn’t be defined or denied by circumstances. She took great pleasure in language and the process of finding words for things difficult to describe it express, the intangible and the unspeakable. She wrote on her websites, only one of which is still online https://solitary4tomorrow.wordpress.com/

It’s a strange thing to lose someone like this, the absence is so individual, so private. People are complicated. Sometimes a light of friendship fades, and sometimes like this it just ends without ending.

I think of you Barbara. I miss you. I hope it was a good end. I am sorry I wasn’t more careful with your writing and your wishes. I felt so intimidated by the request I didn’t check the details with enough care. I still don’t know how to honour your life and your legacy. I’m not sure how to live or how to grieve or what to do with the wings that occasionally whisper from my shoulders. I am a small creature tucked into a burrow listening to the wind howling overhead. I understand very little of life or death. I would have been there at the end if I could have. Maybe in some ways I’m better at that than being there in the years before. Always so many regrets and such loss. I had words for it once.

Goodbye friend. Be at peace. Much love.

I was late to the conference today, my system went haywire this morning and there was much arguing about clothes and adornments. When it gets like this, everything feels wrong to someone and there’s no peace for any of us.

Yesterday at the conference we were watching some of the presenters pause mid speech to listen to a voice, or sometimes pass on a comment or correction their voice had made. It was beautiful to have it so normal in this space. I remember what that was like, hosting the hearing voices group Sound Minds. I remember them sitting in my backyard around the little bathtub with the campfire in it, laughing about how anyone else would say they were crazy, but in this space they were normal.

I have been learning a lot about autism over the past 10 years and one thing that comes up is the idea of unmasking, which is often vaguely defined or badly defined but which I see as being aware of how you actually feel and function and to make choices about that instead of being so buried beneath the mask of being “normal” you can’t even tell. In here with ear buds for when the microphones are too loud, and a little stone to rub when I need something to do with my hands, and a hard mint to suck on it need something grounding because I know I’m going to be raw and heightened and tired and my senses will be intensified or dulled. I’ve come prepared because I know this about myself. Unmasking can be messy but it’s also liberating and moves you away from the bewildering crashes you don’t even see coming.

We live as if we’re not multiple. We live as if Sarah is one person. We are constantly masked. My staff and clients don’t understand this about me. My children don’t. Nightingale took me shopping before we came here, to make sure everyone who wanted to attend would have something to wear they felt comfortable with. It was complicated. She’s well aware of this because shopping for wedding outfits was similar, full of internal comflict and hope and joy and shame and embarrassment and vulnerability. Both invisibility and exposure are unbearable.

So we listened to people bringing their voices with them, and this morning our pantheon turned up and wanted to be present, not just the confident and joyful presenters, the messy and vulnerable and anxious collection of all of us, wanting to be here and be seen and steal a taste of the sense of safety and acceptance we had witnessed.

So we’re doing what we used to do at these conferences, sitting at the back in tears.

I carry burdens of doubt and guilt and isolation. There are scars and vulnerabilities and insecurities that are painfully present. So I am here with both hats – someone who can offer help, and someone who needs help.  It’s not comfortable but it’s who I am and how we are human.

The sense of being allowed to be the way you are is unspeakably precious and difficult to explain to those who create the hideously dehumanising mainstream services. The sense of acceptance and willingness to see value in devalued experiences is a profound shift. It’s healing to hear people passionate about consent and self determination, people creating different, easier ways to communicate and hold safety and equalise power.

I find myself wondering if I could take these notes and links and resources back home and share them. There’s only a handful of Australians here, and there’s so much knowledge being shared that’s so needed. I’m not sure. Waiting for me at home are so many responsibilities, and such a fragmented community. It’s mostly people like me, working hard and doing their best in their own little corner, with their family or clients. It’s definitely heavier carrying that torch of diversity and self determination by ourselves.

I haven’t been to a Hearing Voices Congress since 2013 when it was held in Melbourne. Back then I presented Introducing Multiplicity explaining the different ways people experience voice hearing, dissociation, and multiplicity/plurality, and a second talk about using the Hearing Voices peer based group model to support people with other experiences with my co-presenter Jenny who passed away recently. We used to facilitate the local hearing voices group Sound Minds together.

This time the conference is themed around the topic of supporting young people. I’ll be delivering a keynote called Gary: supporting young people with complicated minds, and then in the afternoon holding space in a workshop about finding hope when supporting people with ’embodied voices’ – all kinds of multiplicity and plurality. 

I used to exclusively support adults in the community services sector, but NDIS has brought me into contact with many families, children, and young adults over the past 5 years, and as a parent of 5 kids, and someone who was themselves a ‘Complex’, ‘at risk’ kid, I’ve learned a lot. There’s always so much more to learn, but I also recognise that a child who hears voices or switches between different personalities is for most people so far outside of their comfort zone they don’t know where to start. I certainly don’t have all the answers but I do know where to start.

I was once that strange child who felt possessed. I’m still ‘possessed’ in that we’re still multiple/plural, we’ve grown up but we’re still a group. We are married and own a house and raise our children and run a business and employ a team of people. I have supported other people and families and witnessed from afar even more people finding good lives. It isn’t hopeless and it doesn’t have to stay scary.

So, I’ve created a collection of new ink paintings in purple and black ink and put them into a powerpoint, printed out a stack of Welcome Packs about multiplicity and dissociation, brought warmer trousers and packed melatonin and sensory items.

I’m so looking forward to meeting familiar faces again and getting to know some new people. This movement is precious and they sheltered me when everyone else rejected me. They saw capacity when everyone else was consumed by my limitations. They welcomed me to grow in the local group and then use it as the fertile soil in which to plant my own strange ideas and grow resources for others out there on the margins who were also excluded and alone. They’re messy and imperfect and certainly not a Utopia in any way, but their values are excellent and the observations and knowledge and hope they hold for people written off as crazy and doomed is unparalleled.

It’s a big deal to come here, it’s expensive and time consuming and it means a week without my family, with my beautiful wife holding the fort with the kids and the business. We talked about it for months, going back and forth about the value of it and the cost and the potential risks. During that time, we also had 4 funerals over 5 weeks, one of them Jenny’s. She was an unfailingly kind soul, who welcomed everyone and spent years spreading her story of acceptance and hope. I carry that story with me, alongside so many others.

Nightingale and I found ourselves asking what we will have wished we had done with them if we knew we only had a year or two left ourselves? Our children are our world and everything is wrapped around our family, as it should be in our circumstances. But my world pre and post covid looks vastly different and I am aware of the losses, the things I used to do and the voice I used to use. Movements struggle when people can’t show up for them. Nightingale and I keep coming back to this – finding safe and accessible ways to share this kind of information. Making the terrifying understandable, the unspeakable bearable. Facilitating conversations. Holding hope. Diversity like this has a suffocating weight and people – and children – around the world are drowning under it. They don’t need to be alone.

Empowering therapists and parents and partners and doctors to become comfortable with people like me, hearing stories of hope and meaningful lives, having a language for experiences so you can share them, and meeting others like yourself are powerful antidotes to isolation, darkness, and terror. So I’ve flown half way around the world to reconnect with a movement I believe in and add my small candle to all the lights people are holding out there in that darkness.

Humans are, by and large, rubbish at accurately assessing many kinds of risks. We are also not particularly wonderful at coming up with fantastic solutions for managing them. In fact, sometimes our solutions are so bad they make us feel better but make the actual risks worse. In public health we call this the unintended consequences of our interventions. A basic tenant of all work in public health is that all actions will have unintended consequences. If you think you’ve done something and got away without having any unintended consequences, it means that either you’re not looking hard enough, or you’re not asking the right questions.

This process of examining the impacts of our actions is called evaluation, or critical appraisal. In public health it’s the macro version of what we do in intimate psychological services where we engage in supervision and reflective practices on a micro level. It’s an essential step that is utterly missing from most risk management approaches. It’s a catastrophic omission.

Without this step we often have no idea if our management approach is working, or not working, or actually making things worse.

Worse, our assumptions are embedded in the framework in ways that forces our thinking down very particular pathways: all risks should always be eliminated where possible. Compliance is always the goal.

Starting with these two premises unquestioningly immediately reduces the whole conversation around health and harm and quality support work to something so narrowly defined it makes my teeth ache. How we define if something is ‘working’ can be so limited it’s dehumanising.

Take a step back even further and we often miss the real risks completely. Entire policy suites are written from what is effectively a set of unquestioned assumptions that doesn’t reflect the real work or risk accurately, and worse, is usually profoundly embedded in all kinds of discriminatory, abelist crap that sets the tone and culture of the work and the workplace in subtle but powerful and destructive ways.

So there’ll be pages of crap and all kinds of training about managing difficult behaviour from clients, but nothing about handling difficult behaviour from co-workers or your managers. Why? Because we have othered the clients as uniquely dangerous and subhuman, and because the exhausting and terrifying mental health risks of dealing with highly stressed and stressful colleagues and bosses is still an unspeakable nightmare. It happens, we just don’t admit it and we sure don’t provide nuanced and compassionate training about it.

There’ll be policies full of waffle about how to do risk assessments to allow our clients to even leave the house, mainly driven by pressure from greedy, unethical, vile insurance companies who don’t care a fig about staff safety or client wellbeing, but are looking for excuses not to cough up when something goes wrong. These requirements are swallowed whole as reasonable and ethical and in the best interests of the staff and clients instead of being red flagged as the undignified, butt covering, traumatic and bureaucratic bullshit they really are.

There’s a hyper focus on physical risk and injury because it’s easier to define, and creating long lists of forbidden activities is much simpler than co-designing individualised protocols tailored to each staff members capacity and each client’s needs.

The assumptions are that risks are intuitive. That it’s easy for us to guess at them, rank their severity and likelihood, design and implement management approaches, and move on. The actual research is sobering. Frequently the risks are wildly different from what you’d guess. The pain points are not intuitive. Severity and likelihood is extremely hard to estimate accurately, even for people fully trained in this field for whom this is their bread and butter. Designing and evaluating effective interventions takes serious skill, and more than that, it takes a framework that draws on essential values and principles such as co-design, lived experience, continuous improvement, open dialogue, client centred care, the dignity of risk, the social determinants of health, trauma informed care, relationship based services, and critical appraisal. Risk management that’s high quality is inherently relational.

Did you know that one of the highest risk services a support worker can provide for a client is to trim their toe nails?

One of the leading causes of death for people with disabilities in Australia is dysphagia (swallowing difficulties).

The working from home guidelines about ergonomic office setups presume all employees are able-bodied and neurotypical. There’s no scope for people who need to move, fidget, or curl up in a bean bag. It’s so hard to get our exploitative workplaces to fund chairs that won’t hurt us or screen armature that’s set at the correct height to prevent eye and neck problems. We haven’t even managed safety 101 for the average worker, no one has got up to including divergent people and the best practices for us yet! We are still largely invisible.

Myths about Duty of Care continue to harm participants too, as this DSC article explores, exposing them to overprotective misguided restrictions that limits autonomy, freedom, and opportunities to connect and engage with the world in meaningful ways. Risk is frequently framed for them through a narrow lens of physical harm or making bad choices and rarely explored as a potential consequence of engaging with services who are risk adverse.

The biggest risks most support workers face are psychological – burnout and vicarious trauma. Undertrained or put through rubbish training, under resourced, frequently without any access to quality supervision or debriefing, we often witness discrimination, ableism, and injustice in contexts where we have very little power. Many of us have lived experience of disability and marginalisation we draw upon for this work, which is a powerful resource but also a source of vulnerability in how we are treated by our workplaces and other organisations. Magdel Hammond has beautifully articulated the risks of moral injury which are frequently suffered by lived experience workers in this linked in post. Moral injury – the profound distress we experience when we witness or ourselves engage in behaviour that violates our values and beliefs – presents profound risks in the workplace. But you’re very unlikely to see it mentioned in your policy suite. Trauma informed care demands we acknowledge the risks of structures and organisations to individuals, to be attentive to signs of distress and harm, and responsive to those indications. We aren’t even having the conversation. When faced with work requirements that are at odds with our personal values, we most often privately and silently choose between compromise, or judicial non-compliance. Both can take an extremely high toll on our mental health.

We keep blaming the individuals when things go wrong. Individuals do the best they can where they find themselves, and that’s a horrifying reality when you really think about what it means that some of the horror stories out there were someone’s best. Our tools let us down. Our language, our training, our incident report forms, our risk policies, our management approaches, our gig economy, they are all fundamentally inadequate for this work, in extremely dangerous ways. We have the frameworks we need. We know about trauma informed care, about the value of cultural awareness, the empowering dynamics of the recovery model. We know that values based work is essential when supporting people. What we don’t have is those models translated into our structures and tools. Our working practices, policies, and documents. We talk about dignity of risk then have lengthy processes that gatekeep leaving the house. We acknowledge the value of individualised care then write policies without any flexibility that must be applied to all clients. We understand the risks of bearing witness to suffering, then create training that’s little more than an instruction to try not to be affected, building shame and secrecy around people’s struggles. We are not effectively translating our values into our work, and it’s putting us at risk. We are most often silenced about those risks, and silenced about the impact on us. We are trying to provide safety for clients in contexts where we don’t get to experience it.

It’s not just us, all workplaces remain bastions of trauma, abuse, and suffering, particularly for those already marginalised. The power of the bosses and the risks of the work are only vaguely contained by laws protecting those dependent on their paycheck. The rules are written by the powerful who have agendas of their own. Most harm happens exactly where harm is always found – in the unspeakable. What we feel we can’t discuss, or write into policy, or create training for. There’s no accountability for the lovely mission statement. There’s no way to ask how it translates into this policy or that practice. So the beautiful values and the elegant frameworks remain as unrealised dreams, guiding lights or stars to navigate by if we’re lucky to be in a good workplace, but far, far from hand. We work down in the mud and the mess with tools that harm as much as they help, and cultures much more likely to blame us for breaking, than to admit it was always a possibility, and one we were not protected from.