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.

This is the not the future people envision for their children when they say they don’t want to burden them with a label. Diagnosis has been complicated for me, painful, isolating, relieving, hopeful. Since I’ve been diagnosed with Autism and ADHD 5 years ago, I’ve never experienced that level of exhaustion again.

I’ve learned that I’m risk blind and need to pay attention to the anxiety of those around me when I’m flying too close to the sun. I have explanations for what used to be confusing and humiliating limitations like not being able to listen to voice mail or reply to emails. I hate myself less. I pace myself better. I let go of a lot of things. I’m beginning to understand what I need to be able to show up and do the things that are important to me.

The labels come with a price of course. The diagnoses subject me to misunderstandings and low expectations. But the alternative was devastating. I’ve pursued diagnoses for my loved ones, hoping to spare them what I’ve suffered, and aware that I have no idea what it’s like to have been diagnosed young, and that they may have both benefits and costs I can’t relate to.

Here is a journal extract I wrote in an episode of exhaustion a number of years ago:

“Finding words for experiences that have no language for them, finding ways to string life back into stories, into a narrative that starts and proceeds and finishes, when my world has unstrung like a broken necklace. Discovering that in this place where things do not make sense that there is no inclination to share, no longer a drive to connect that makes me tolerate the whispered accusation of narcissism when I bare myself in public. I can be silent. I don’t need you, I don’t need this space, I don’t need to be heard.

I wait. I wait for the world to have meaning again. The days pass. Some days I find contentment. Some days I live with a stoic acceptance. Some days I cry until I vomit.

People miss me. While I’m in deep space, protecting the world from an atomic anguish. I tow my boat way out to the deeps where the blast won’t burn anyone else’s house down. I swim far from the old comfort of my online world. In sudden panics I run to familiar harbours. I bite my teeth over the blackness and crouch at the edge of other people’s lives and bask a little in their normality. Some days I fail my own principles and howl while a loved one talks soothingly, holds my hand, listens sympathetically, tells me I mean something to them. Sometimes I make them cry. I watch tears in their eyes, desperate to feel anything but the void.

Someone sends me an email like a crow sent winging from a black well to say thank you for writing from your own hell, it helps. I want to save us all. I’m saturated by death. Sometimes I become terrified I’m going to kill myself, and I calculate the loss, the holes punched through everyone I know and have loved and my reach, my influence, my connections so hard won now seem like the worst possible thing I could have done. Alone my death is just a sad story. Have I built a tribe so you can watch me self destruct? Will pain be my legacy here? Why write when I have no answers, only fears?

After a night of terrors I calm over and over, that reignite the moment I fall asleep and wake me in panic, I crawl to my psychologist’s office and wrestle with hysteria in front of her. She books me an emergency appointment with my GP for anti-anxiety meds and diagnoses me with severe exhaustion. None of the fast acting meds are pregnancy safe so I come home holding a script and a sense of being broken that I’m going to have to live with. How sweet it was to feel above this, once.

I start culling the big dreams, the vast sense of responsibility, the career plans. Tangled with my grief is peace. I have tried very hard and maybe now I can stop pushing this boulder up the hill. Enough…. I look into short courses and small jobs – orderly, care worker, and when I’m not being garrotted by my own high expectations and elitism I’m relieved at the prospect of just living a small life, earning a little money, letting my business be a hobby. Painting when it moves me, writing because I love to. Selling a few prints. Letting it be what it is. Not having to turn those skills into a factory, or myself into all those things – entrepreneur, leader, business person, change agent. I’ve watched the successful ones and tried to do what they’ve done, follow their paths. My own parents ran a very successful business for many years. I’ve risked many things and nailed my colours to the mast. Some of them have worked out and as my world burns around me I want to let go and go back to loving the things I have, the risks that paid off, the life that’s waiting here for me.

Exhaustion is storms and sunbursts that run according to their own tides. I have no more control over my feelings than I do over the weather. Night falls at 2 in the afternoon and I creep to bed to hold my wrists and tell myself I’m okay over and over. The moon sings to me and I find I’m still alive – not numb, not ruined after all. I haunt my house naked with starlight on my skin and breathe galaxies with a rueful smile and the night smells of roses. The strain of feeling deeply alive and very dead each day leaves me trembling with shock, a violin with strings wound too tight. But I can feel it seeping back into my cracked heart.

More human than I want to be.”

I tripped over my invisible disabilities and fell hard, and fell often. I am better off where I am now, knowing what I know now. Life still hurts badly at times. It’s more complicated and tangled with more people whose stories I’m careful not to share. I miss writing this blog and having my online community, and being able to use my words to provide context to so much about me that is different and doesn’t make sense. This blog was the way I leapfrogged over so many barriers between me and other people. I felt like I had a whole world of people once, who knew me and cared about me and felt cared about by me. I lived in public in a way that was a mutual gift. I am more private now, I have children, clients, employees who all need discretion and all fear exposure. I find myself more decontextualised than I was to my people. I make less sense, become more isolated. There must be a pathway between disconnection and exposure, but I’m not yet able to see it well. If I can’t be sure, I hold my tongue.

But I spend less time in meltdown, sobbing on the floor. I keep house. I am raising four children at home. My capacity has increased, my understanding of self care and my knowledge about my limits has been a gift. The first time someone gave me noise cancelling headphones to try, I was walking with them through a busy airport. I put them on and pushed the button and the peace came over me like a flood of warm water. It was so intense I couldn’t walk. I sank to the ground where I was and just wept. I had never experienced such peace outside of water. I used to calm myself by lying in a warm bath with my ears underwater. The same muffled quiet wrapped me up and it was so beautiful and so painful to realise I had lived my entire life in a harsh bright world that always hurt and never made sense.

It’s a strange story to tell, given my deep ambivalence about diagnosis in mental health. Diagnosis of poorly constructed syndromes, laden with assumptions and stigma, can function as social curses, doing catastrophic harm. The world of neurodivergence with it’s profound observations and confused wrangling of slippery categories and terms is not so different. The low expectations that come with a diagnosis like autism, and the stigma and misunderstandings that shadow the poorly named ADHD have costs. But on the other hand, I spent literally years trying to understand and find words for concepts as basic as body doubling. I have been on the intersection of so many invisible diversities, contorting myself to try and fit paradigms I was never built for. I am now finally beginning to understand my long history of failures and losses, and start to claim my skills and build my capacity. It’s sad, and hard, and beautiful, and deeply liberating.

He wrote about how other people responded once they learned about his disorder:

“Revulsion. Disbelief. Lurid fascination.“

That’s a familiar place. Not all multiples/plurals experience this but many of us do. I wrote about the toxic culture of fear, fascination, and disbelief around multiplicity back when the movie Split came out, in I’m multiple and I don’t kill people. He’s right about the revulsion aspect although I suspect he gets a much stronger response of that and I get more disbelief and fear. (There’s not a lot of serial killer movies about people with rare hormone disorders murdering folks, although there are many about people with physical or facial differences doing so)

A few years ago when Star was in the worst grip of her eating disorder, I was researching to help her and came across some interesting ideas about how and why we eat. Certain impulses are innate at various strengths at different times, and help to balance each other. For example; fear of a new food we haven’t seen someone else eat, disgust at foods we have previously felt sick after eating, suddenly feeling revulsion for favourite foods when we have eaten them too often in the context of a too limited diet, and so on. These are protective impulses that help us eat sufficient foods in sufficient variety to be healthy, and to reduce our chances of being harmed by spoiled or poisonous foods. Hormones can have a big impact on which impulses are strongest (as most folks who have been pregnant can tell you) and in disordered eating, poor nutrition can change hormone production in a nasty spiral where those deep, involuntary impulses that cue hunger or revulsion are causing horrible harm instead by making it incredibly difficult to eat.

Difference and disgust have a strange relationship, not just in food but in culture. When things are out of the norm they can trigger the same deep involuntary revulsion culturally that being served raw fish, offal, or eyeballs can to someone for whom this isn’t part of their normal diet. We’ve seen this with the knee jerk reaction to LGBTIQA+ people, with the added twist that some of the most intense negative responses are from those who are themselves queer and hiding – shame and disgust appear to have a relationship – the inward and outwards face of the same rejection and loathing.

One of things I find so pernicious about the serial killer trope is that it re-enforces this response. It gets up close and personal with difference in a way that encourages revulsion and fear – which are appropriate responses to a human predator – but attached instead to people who are simply different, themselves the victim of predators, or in terrible emotional distress. When plurals and victims of trauma and abuse suffer this social burden while the people who harm us often blend in to society incredibly well, there’s a bitter irony here. There is a brutal double impact of not only being traumatised but bearing the abuser’s social stigma and shame. This can do far more harm than the abuse itself, and dealing with it is one of the reasons that people who are deemed ‘lucky’ because they were only ‘almost harmed’ by rape, assault or family violence frequently struggle in very similar ways to those who were obviously and overtly harmed. They were still powerless and traumatised. They are still impacted and different. The harsh reality is that all too often, being different can expose you to much more social harm than being predatory.

Something I find of immense value about articles like this one, is the way it links the different experience back to the universal human experience. When you are first coming to grips with something difficult or different, it tends to be consuming. At first it utterly isolates, and it feels like you are the only person in the world dealing with it. Then, if you are fortunate, there’s powerful moments of connection and recognition, finding language for experiences and peers you hadn’t known about. That’s often the case whatever the difference is – chronic illness, neurodivergence, queer identity… And for a little while you dive deeply into the new world and consume it. It’s often a life saving discovery.

After a time for most of us it eases back a little or even a lot. It ceases to be front and center of our minds and our lives. And we start to discover different threads, common ground with other people. We find that other people too, have suffered and struggled in ways that are similar and different and parallel. These connections are just as important to make, they form our bridges with humanity across deep gulfs and gaps in experiences. They help us remember all the other aspects of our identity that tend to be overshadowed for a time. There’s a rebalancing process that can involve a shuffle with how we engage communities. Queer folk get tired of their activism. Sick people decide to spend their spoons on a hobby night rather than a support group. Other aspects of life calls.

For us, when we were 10 years into multiplicity advocacy we found we reached a place where we were over it. The fear and the fascination had long gone. We couldn’t find any enthusiasm to read another book or article with a slightly different take on the same stories and ideas. The difference stops being defining, becomes part of your experience of life but no longer the terrible secret, bewildering loss, or deep wound. And in that space we are no longer captive to it. We become – both to ourselves and our communities – human. Not curios or ambassadors or there-but-for-the-grace-of. Multifaceted, members of more than one community, imperfect. Just human.

We have needed time away from the world of plurality to focus on the biggest changes in our life: letting go of Rose, grieving Star, raising Poppy, falling in love with Nightingale, bringing Bear and Calliope into the world, caring for Nemo. Building my business to the point where I’m not dependent on welfare anymore. Buying a home together. So many huge things I’ve been adjusting to, soaking up, learning about. So many precious dreams I’ve chased.

Nightingale takes me out to dinner. We discuss our good luck, our privilege, ways we can give back. She raises the Multiplicity book again. How huge the need is still in this space, how vulnerable and alone and hidden so many people still are. We turn it over and over, how it might help, how to fit the research and writing and editing into our incredibly busy lives. A fire rekindles and we find ourselves unexpectedly ready to take up the torch again. This is not all of who I am, but it is part of who I am, how we live in this world. It is complicated and isolating and beautiful and I’m not ashamed of it or willing to be utterly defined by it.

I’m also autistic, and as I discuss inclusion in schools, workplace accommodations, and police training I’m often struck by the extreme lack of parity. Can you even imagine what it could look like if plurality was given the same platform, treated with the same sense of importance and validity?

We deserve a lot better. So much of the destruction people suffer has nothing to do with the experience of plurality and everything to do with the context in which we live and are not accepted. We are human and we deserve a seat at the table.

Find more of my work about plurality/multiplicity here.

But ‘trauma’ as we usually understand it and think about it can also mask crucial issues, which I’ve explored before in my article Trauma is not everything. A set of scales has been developed called Adverse Childhood Experiences, or ACE’s. It’s a clunky and challenging thing to try and clearly define adversity or trauma, given how contextualised and individual they are. It has limitations and issues. However, as a research tool, ACE’s have been fantastic at bypassing the limitations of the DSM. The linear model of one thing causes one disease/bad outcome keeps all information trapped in tiny silos. The vast landscape of adversity with all the complexity of our responses, adaptations, trade-offs, and suffering is so much broader than that approach.

Most research focuses on a single trauma or risk factor, or a single diagnosis or problem outcome alone. ACE’s allow research on clusters of adversity of all types, and finds they are risk factors for clusters of struggles of all types. Mental health is not like the epidemiology of infectious diseases where a single disease can be traced to a single bacteria or virus. It’s more like studying immune function, exploring why this person contracted the disease when exposed and that person didn’t. The gaps between exposure, colonisation, and infection. Why does this person have staph bacteria causing no problems in their skin, but that person has open wounds  infected with staph?

Vast research studies show important information such as – ACE’s are risks for every DSM diagnosis. Whether someone winds up with an addiction issue, anxiety, ADHD, or an eating disorder, exposure to ACE’s increases risk of struggle and suffering in a wide range of ways.

Another key finding was that adversity compounds. People exposed to multiple ACE’s face much higher risks of challenging and painful outcomes. Many of these outcomes are also risk factors themselves – for example childhood poverty increases the risk for depression in adulthood. But depression is also a risk factor for heart disease. And heart disease is a risk factor for depression, which is a risk factor for poverty. These vicious cycles abound, far outside of the sight of a model designed to explore one issue and one outcome.

This may seem like stating the obvious but that’s only because the outcomes of studies like this have gradually become part of popular culture – commonly accepted wisdom. Back in the 1980’s, it was ‘common wisdom’ that children were much more resilient to trauma than adults. Psychological support would be arranged for adult victims or witnesses of horror but children were assumed to be unaffected. The younger the child, the less the impact. Of course, the reverse is true. Early trauma impacts development in more profound ways than it does to an adult.

This brings into focus a common myth about resilience. Because young children rarely show distress in ways adults expected, they were seen to be coping. Their distress was overlooked, delayed, or misdiagnosed. This remains a common problem. People who ‘appear to be coping’ are often held up as examples of resilience, when the reverse is the case. If ‘coping’ is defined as not appearing overwhelmed or hugely affected, it’s actually associated with worse long term outcomes. Coping has an inverse relationship to resilience. I always think of a story from the incredible author Jackie French about this idea. She was talking about how trees deal with heatwaves and drought. The gums look awful immediately, shedding leaves and even whole limbs. The birch trees on the other hand seem to be coping, fairly unaffected except for a little drooping. But over time, the birch struggle more and more, unable to adapt, and by the end of the bad spell, most have died. The gums had fewer leaves and limbs to keep alive and shut down as much as possible through the bad patch. At the end of it they spring back into life, albeit scarred, and recover well. This is resilience.

In the alternative mental health sector, informed by consumer experiences, it’s been a common refrain to argue that the bio-medical model starts with the question “What’s wrong with you” with all the implied assumptions of personal disorder and brokenness that comes with that. The argument has been that we should instead be asking “What happened to you?” in an attempt to recognise the impact of the environment, the circumstances people are in, and the social determinants of health. It’s a powerful paradigm shift.

But this focus on Trauma can cast a shadow over something even more destructive and nebulous. If you define trauma for a moment as an adverse experience – the presence of something destructive such as a natural disaster, abusive parent, or sexual assault, we often struggle to see trauma when it looks like absence. We call it neglect when parents grossly ignore the physical needs of their children, and poverty when it’s an absence of money and resources, but struggle to even name the losses faced by a child without friends, or with loving parents too unwell or overwhelmed to attend to emotional needs. We don’t have a counterpoint for the words ‘widow’ or ‘orphan’ for when parents lose a child, and we’re still struggling with stigma around issues like infertility.

I am often asked what happened to me, what went wrong for me to have PTSD and DID. People assume there are Traumas that can be neatly summarised and have clear impact. And some can – I can talk about the stress of being stalked by a suicidal classmate who wanted more of the only person he felt understood by, even if that harmed me. But the chronic suffering of loneliness doesn’t fit expectations. As a story it lacks drama, there’s no beginning, middle, and end, no peak point of conflict to tell, no vicarious horror, no real narrative. By comparison to the unspeakable stories of violence and violation, it’s all too speakable but has no real words to convey the depths of pain. It is more likely to cue stigma than sympathy – culturally loneliness is costly to admit to, and within the rooms of mental health professionals it often earns diagnoses that assume you lack social skills or sabotage relationships. Loneliness is not only radically ignored as a source of harm, it’s taken as evidence of personal failure and defects, not of community failure. Many traumas of lack carry this stigma, the assumption that you should have tried harder or that in some way it’s your fault. If you admit to them, you’re more likely to be invalidated than supported.

There are many more losses like these that live in the shadows of the big stories of trauma. They are broken dreams and broken promises and crushed hopes. One reason they are so important is that there’s research suggesting they are even more crucial than ‘things traditionally understood as traumas’ in predicting risks of harm. By which I mean, a child without caring relationships, quality education, or safe predictable environments is at higher risk of harm than a child who experiences other traumas but also has good support. I recall reading a study following up the children who witnessed awful things during Hurricane Katrina. And yes, those who had more intense experiences, witnessing people die or in terrible pain, they were more impacted. But down the track the biggest predictor of resilience had littleto do with the severity of their experiences. It was whether they made friends in their new school. Those with friends were largely free of the chronic symptoms of traumatic stress. Those without friends lacked the social support to protect them and allow them to recover. They were experiencing significant symptoms and distress.

The presence of something bad is less destructive than the absence of good things.

This notion is not yet accepted wisdom. And because it is often misunderstood, it informs a great deal of our conversations about resilience, where people who have suffered major trauma but had great support are held up as examples to people who have struggled without essential resources but have no trauma to point to. A great deal of the time, resilience is simply about access to these resources. The presence of love, compassion, consistency, even among the devastation of chronic multiple traumas, has a profoundly protective impact.

Many of my family and friends are outliers. We have experienced severe trauma but are not addicted to ‘recreational’ drugs, victims of polypharmy, or dead. We are extremely unusual among our peers with similar experiences. People often point to our resilience as if it is a personal characteristic. While it’s true that personal characteristics play a role, there’s a lot of invisible resources and luck that play a larger one. It’s stumbling into a hearing voices group and having access to free social connection that normalised kindness to distressed freaks and outsiders. It’s having someone safe to call at 4am from the police station when you can’t go home. It’s finding a psychologist who works with you through all the missed appointments and panic attacks and ambivalence and stands by you as you find your strength to engage trauma therapy. It’s services that provided access to affordable food, it’s the friend who gave us money that went straight towards therapy, it’s the person who paid for the assessment to access support. It’s the meal on the doorstep and the voice on the phone.

Resilience is about community resources, family resources, friends, programs, money, housing, access. Invisible support. Not what happened to you, but what happened next.

And here lies our power. We may not be able to prevent the bad thing. But trauma comes with a hidden insidious message of powerlessness. And myths of resilience as a personal characteristic isolate and blame those most in need of connection and care. Trauma tells us we are helpless, not only those of us to whom it happens but those who love us. It reminds us we will never be unblemished again, that we cannot heal all the wounds or hide all the scars. It tells us a lie about our inability to protect ourselves and each other. But showing up for people is powerful. When what happens next is love and kindness, people do well. And when we understand the trauma of lack and loss as real and significant, we look at both trauma and resilience differently. We show up for each other differently. We understand that mental health support is access to counselling, but it’s also good housing programs, affordable food, and inclusive schooling. We start rewriting the narrative around trauma and resilience, about the personal characteristics of those who have suffered, and what we owe to each other.

Her siblings are besotted with her. Bear is 2 and loves her with a degree of unrestrained enthusiasm that requires attentive supervision! Poppy at 8 is old enough to carry her and even sometimes walk her to sleep. Nemo didn’t think they could fall as hard for any baby as they did for Bear and has discovered that joy of your heart expanding.

Calliope has discovered she can interrupt any activity and melt any heart simply by smiling. She has the most adorable dimple on one side. She loves to talk back and forth with her little burble and coo. When she’s interested in chatting she’ll lift her eyebrows in an expression of intense surprise. She is happy for a time in her bassinet but loves to be carried in a wrap, snuggled close to your chest. Sometimes if she’s sad and crying she’ll stop and listen if you sing to her. If she’s very upset, her favourite song to calm down is Aretha Franklin’s (You Make Me Feel Like A) Natural Woman.

I cannot believe how incredibly fortunate I’ve been. Back when I was 14 I realised that I deeply wanted children. So many obstacles came between me and that dream, the collapse of my marriage, my struggles with endometriosis and adenomyosis, coming out from a hostile religious background, chronic illnesses, poverty, unemployment. To be unpacking the carefully saved clothes for the fifth and last child, and this time putting them aside to pass onto someone else is simply astonishing. It’s a very busy, very tiring life but I’m absolutely in love with it. It’s a privilege beyond words to raise these children and I’m very aware how many people don’t get the chance.

We recently put a little money together to hire what Nightingale calls a Baby Whisperer. A lovely NICU nurse with a lot of additional training including in Newborn Behavioural Observation came and spent some time with Calliope. Nightingale and I have noticed that we don’t seem to be able to read her cues as well as we could with Bear – at this age we could pick a number of different pitch cries that indicated hunger or tiredness or discomfort with him, but with her we’re often unsure. The Baby Whisperer came and assessed her to see how she was after the illnesses and hospitalizations. We discussed how she had been showing signs of feeding and touch aversions from the trauma of her treatments. We’ve been gently rubbing cream into her hands during restful moments like when she’s feeding to help her recover from the stress of multiple painful gelcos being placed.

The outcome was really thrilling. She’s recovered incredibly well. She has strong cues, she’s robust, able to soothe herself when a little agitated, not showing any residual touch aversions and only a little feeding aversion. The glitch is more that we’ve been basically trained to be hyper sensitive to her health cues – we’re not very tuned into her different cries but we pick up on skin colour changes with incredible speed and sensitivity. So we’re missing some of her social and emotional cues as a result. In a nutshell, she’s not traumatised but we are a bit! So we’re working on that. Having her so sick, and the hospital response so fragmented and contradictory cemented that we need to be intensely vigilant monitoring her health and advocating for her. It takes a minute to stand that down and switch over to focusing on connection.

So here we are, 4 fabulous kids in the house growing up at a phenomenal rate. Chronically broken sleep. Date nights few and far between. The other day the older 2 kids happened to be out of the house for the night and we got very excited that we only had the younger two to care for and said brilliant! Date night! Cooked steak, lit a candle, and laughed at ourselves because we don’t know anyone who would consider caring for a toddler and a 2 month old a night off. It is gruelling hard work, and there’s times of overwhelm and misery. There’s also a beautiful bittersweet awareness that every milestone she reaches is the last time we’ll have that experience. Daft people who haven’t quite followed the complicated nature of conception in our queer family tell us we can’t be sure we’re done and we never know what might happen. (So much planning and baby math goes into conception for us) We are savouring everything, and so tired we’re forgetting half of it, falling over it in the dark, tag teaming, staggering along in the perpetual dampness of infant care. It’s absolutely beautiful and utterly consuming and I’m incredibly proud of how we’re living it and looking after each other.

She’s beautiful, she’s healthy, and she’s so well loved.

I find that there’s often a very limited view of what Disability Support Workers do with their time, and it can be restricted to basic domestic domestic tasks like cooking, cleaning, and driving folks around. This is certainly a lot of the work we do, but our role is generous in scope, and a lot of important, valuable work can be done remotely. My team started offering this during covid, some of very vulnerable people were assessed as low support needs by other organisations and had their services removed. There’s a profound misunderstanding at times of the nature of mental illness and neurodivergence. Just because these people could technically make themselves a meal and feed themselves didn’t mean they had the capacity to organise, prepare, and eat during a massive worldwide crisis. We picked up a number of clients who were physically capable but at serious risk, self harming, having meltdowns, unable to keep themselves safe. Online support provided safety and connection and addressed essential needs for folks who were otherwise unable to meet them.

Beyond covid, virtual support can still solve a lot of common difficulties for people:

• Living remotely with limited local options
• Difficulties with trust due to trauma, paranoia, or anxiety making it harder or impossible to have people in your home
• Difficulties with your family or housemates making it impossible to have support workers in your home
• Low social battery meaning in person supports can be exhausting
• Sensory sensitivities, eg heightened sense of smell making it difficult to have people in your space
• Over empathic difficulties where you mirror people’s physical and emotional experiences in their presence – for some people, working remotely reduces this
• Chronic instability of plans or housing where you never know where you’re going to be at 3pm on a Thursday but a phone call will probably find you
• Having specific support needs such as an uncommon disability or trauma history that make it harder to find and onboard local folks who don’t know much about it

The most common types of support we have found helpful for people virtually are

• Administrative tasks
• Planning, goal setting, prioritising, delegating
• Organising and tracking projects
• Body doubling
• Prompting good working habits eg self care, breaks, realistic expectations
• Problem solving
• Communication: scripting, responding, booking, cancelling, rescheduling
• Researching eg job ads, friendly dentists, ideas for managing spasticity, support groups
• Onboarding and training other staff eg pre interviewing cleaners, training new support workers in predicting and managing meltdowns well, helping onboard a new OT, staying screening questions for a behavioral support practitioner
• Managing the roster, handling short notice cancellations, organising staff
• Emotional support and mentoring
• Homework and study support
• Reminders and support to utilise other allied health services eg to practice the mindfulness suggested by the psychologist or purchase the fidgets recommended by the OT
• Note taking and facilitating other appointments eg helping someone feel safe to attend a telehealth appt with a new dietician

I’ve seen a lot of folks able to use online supports to overcome some considerable access barriers. In some cases we start online then progress to in person support as relationship and trust is built, and the right team with the best onboarding and training process comes together. In other cases online support continues to be a really essential part of someone’s support long term.

I use online support myself to help manage my business, because my disabilities can severely impact my capacity to track tasks, respond to emails, and manage my calendar. It’s convenient for me to have someone online rather than in my space, they are linked to my online tools like email, and I often use their support in my online meetings. I find it helpful to be able to message questions or needs as they occur, and then pick them when we next meet.

For our clients I’ve seen people use online support to go from having no in home services at all due to a severe trauma history, to being able to manage a whole team of supports!  Folks living very remotely able to gain the right support for them and finish up some tricky administrative tasks. People living in profound clutter able to start building a supportive relationship without having to confront their home environment immediately. Folks with severe fatigue able to get on top of essential tasks without having to ‘host’ a person in their space. People with compromised immunity able to have regular assistance during periods of severe vulnerability such as the week of chemo treatments.

You can text, phone, video call, or online chat. You can allow them into your digital calendar, or use free task tracking tools such as Trello. You can forward them a confusing power bill or stressful Centrelink letter. You can screen share your assignment or set your phone up on the kitchen bench and talk it through while you wash some dishes.

If this sounds like a great idea for you, you have a bunch of options in how to set it up. If you have an existing fabulous support worker you can ask for one of their regular shifts to be remote and see how it works for you. You can onboard a new support worker specifically for this role. You can also reach out to an online virtual assistant such as the lovely folks at Realtime VA. You’re certainly welcome to contact me, although I do have a waitlist for new clients.

I hope this is useful food for thought and an encouraging different approach. NDIS is a minefield of constantly changing rules and wild confusion but there’s capacity for a lot of creativity still and when support work ‘as usual’ just isn’t working for you, you can try something quite different and see if it clicks. All the best!