Hearing Voices Congress 2025

/ Sarah K Reece / Leave a comment
ID ink painting of a figure in brown with a paint brush, painting a large blue and brown wing from one their shoulders

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’m Presenting in Prague

/ Sarah K Reece / 1 Comment

I’ve just arrived in beautiful Prague today.  I’ll be presenting an online keynote and workshop at the International Hearing Voices Congress 2025 for Intervoice Day on the 9th Oct. You are welcome to attend that day online for free by contacting Kellie Stastny (Chair of Intervoice) at her email: kelnco87@gmail.com.

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.

ID ink painting in dark purple of a downcast young adult with an arrow in their chest, pinning a card to them with the word Complex on it. Their dark hair tapers into fern like curls, which are also the pattern on their pants.

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.

What’s really hurting disability support workers?

/ Sarah K Reece / Leave a comment

I am frequently infuriated by the incredibly poor understanding of risk in this sector. The standard hr templates are inadequate to a level bordering on neglect. They are aimed at protecting the organisation rather than creating mutual safety for organisation, staff, and clients. The resources around risk and safety are so fragmented and limited, so inapplicable to our actual work and our actual workforce, and so distracted by the risks we can easily find words for and pretend to ourselves we have adequately controlled. The real risks are frequently completely missed, unspoken and unspeakable. And many of the strategies used to manage the risks we can talk about are profoundly destructive.

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.

The Gift of Neurodivergent Diagnosis

/ Sarah K Reece / 2 Comments

Like many late diagnosed neurodivergent people, I’ve had a hellish run with episodes of severe exhaustion and burnout. Not understanding how I function, what supports me and where my limits are, seeing and being seen only for my capacity with my difficulties all unnamed and invisible created a horrifying cycle of productivity and crash. Diagnosed as gifted in my teens but not with ASD and ADHD until my 30’s created a horrible environment of insanely high expectations and invisible vulnerabilities. Every few years I’ve been diagnosed with exhaustion as my mind and body run out. I’ve endured brutal unexplainable immune system crashes where I’ve simultaneously contracted infections in multiple areas. My other conditions such as fibromyalgia and PMDD flare to unmanageable levels. I fall off the edge of my world and I never see it coming. Trying to stay alive takes all my energy and every resource I have. I lose everything I’ve built and have to start from scratch, and I never have a good reason why.

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.

Diversity at its darkest: speaking out against disgust, dehumanisation, and shame

/ Sarah K Reece / 2 Comments

I don’t print chirpy stickers about diversity because I think it’s easy. Difference can be extraordinarily painful. I was very moved by this powerful article about Patrick Burleigh: I was a four year old trapped in a teenager’s body. It’s a man’s reflection on his childhood with a very rare hormone disorder that makes puberty start in infancy. While my life has been very different and my responses to the circumstances I was in about the opposite of his, there was still a lot of common ground.

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.

Understanding Resilience: Trauma is not just what happened to you, it’s what didn’t happen

/ Sarah K Reece / 1 Comment

Trauma is such an important issue to understand, – it underlies every DSM diagnosis, is a profound risk factor for all kinds of poor physical health, and is the often un-examined context for a huge range of ways people suffer and struggle.

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.

Introducing Calliope

/ Sarah K Reece / 1 Comment

This little snuggle bug is now 3 months old. After her rocky start she has settled into our family and is back to being a regular newborn. The temperature wobbles have disappeared and that frightening skin mottle is just a bad memory. She’s beautiful and healthy, eats well, gaining weight, and alert.

ID gorgeous smiling baby girl with light brown skin, bright brown eyes, and a little dark brown hair. She’s lying in a bassinet, wearing a Winnie the Pooh onesie.

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.

The Magic of Online Disability Support

/ Sarah K Reece / 2 Comments

Not a lot of people are aware that online disability support is an option. It’s not useful for all folks in all contexts, but for some people it’s absolutely magic. Myself and some of my team have been offering this for the past 3 years and we’ve seen some fantastic results for adults and older teens.

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!

Making a Home

/ Sarah K Reece / 3 Comments

Home from the surreal terror of NICU and into the surreal mix of bliss and boredom that is life with a newborn. We’re exhausted and recovering as best we can. Baby is doing so well, getting stronger and feeding well. Little bear is bewildered by the new addition but very much enjoying exploring the new yard. The house still has many boxes stuffed into corners yet to be unpacked, the carport is a mess of dismantled shelves and tools and craft supplies. The front lawn has largely died while we were preoccupied with the baby, and is covered in pieces of jungle gym and swings yet to be reassembled, and things too heavy for me to move alone like a table with a circular saw.

I didn’t love this house at first. This was not our first choice, we were trying to renovate the damaged house Nightingale bought years ago. When that fell through we had a tiny window in which we could buy a place before baby came along. We applied for a house every week and there were others, prettier ones with creative layouts and ivy growing up the walls that I was in love with. This one was merely available, in the right area and with 4 bedrooms. When we were successful in buying it I was ecstatic and then I cried in disappointment.

I have waited a long time to own a home and I thought we would have time to explore many options and fall in love and it would be romantic. It was instead absolutely exhausting and under tremendous pressure. Sometimes one of us would run into the open inspection while the other lapped the block in the car trying to keep Bear sleeping through his nap, then tag out and swap. Some were insanely expensive, much more so than we’d expect. Some were frighteningly dilapidated. Many lacked basic things we need like a fence. It was an intense time with Nightingale extremely pregnant and unwell.

But we’re here now, in this funny white box of a house, set into a hill, and I’m falling in love with it. It’s peaceful. There’s birds and trees. I drag the sprinklers from tree to tree and patch of lawn to patch, starting to nurse it back to green. There’s a clothes line by the back door and I find peace in the simple domestic tasks after days of wearing the same soiled clothes in hospital. Bear moves dirt from one spot to another. I open a few more boxes every day, start to make patches of functioning space in the chaos.

It feels different to own it. I’m settling into the carport as a workshop space, and I’m not afraid of splashing paint or creating sawdust. There’s so much hard work that came before this and is yet to come but right now I’m in a tiny quiet eddy of time without a school run and work stripped back to the basics, not ready yet to face the world. Just cocooned here, getting to know the baby, the house, letting everyone get used to all  the big changes. Eyeing up the empty spot in the freezer where I keep the spare meals, planning the fortnight shop, changing nappies, tidying away crafts, folding washing.

ID Sarah sits in front of a garden, with very short silvery hair, white skin, and blue eyes, smiling at the camera. I’m wearing a dark blue t-shirt. Cradled to my chest is a tiny baby with dark hair, sleeping in a froggy position and wearing a strawberry outfit.

Soon enough I’ll be the working parent again and my job will be to leave and focus elsewhere. Right now I resent that so much it’s hard to breathe, so I’m focused here. I’m cleaning Bear’s bottles and figuring out where to store the spices and learning where the new chemist keeps the latex free bandaids. I’m incredibly tried and I wouldn’t want to be anywhere else, doing anything else.

Dreaming of the Last Child

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Sitting at the ASO Hans Zimmer concert with a friend, quietly crying to the theme song from Inception. It’s so beautiful. I remember the first time I watched that movie, thinking of my friend Leanne who had died, and feeling that she was so close by, just in the next room. That god was only a dream away, was just waking up. I wept then too.

Nightingale and I are expecting another baby. Our last little one, the fifth child in our little patchwork family. We’re halfway through the pregnancy, and while Nightingale has been brutally unwell, the baby is healthy. Much loved, much anticipated. My world, which was once so lonely, is now woven tightly with my family, my children, and my work. Solitude is rare, I am the gardener tending all the growing things, aching in the moonlight and resting when I can in the summer heat.

ID: black and white ultrasound image, profile of a baby’s face at 20 weeks old.

We’re back in the world of hospitals and white water rafting through medical trauma. I remember you being born, Bear; I remember cutting his cord. I remember how hungry I was to hold him, how my skin ached when he cried. The memories are like dreams, hazy and unclear. Underwater in a sea of trauma. I remember stuffing the scream back down inside me, my fingers twisting my fingers into knots, crying in therapy until I couldn’t breathe. Those memories are sharp and clear as glass. 

I remember you too, Poppy, birthed into water in the dim light. I remember you falling asleep on my chest, night after night, pacing the driveway with you in a carrier, held close to my heart. I remember the frozen wordless terror left in my flesh.

It’s exhausting to have children at 40. And yet, my capacity is greater than it has been at any time since I was 18. This is my window, our last window, to bring these beloved children into the world. And while this baby is our last baby, it will not be the last. There will always be other children needing love, food, or a spare bed. There will be strays and grandchildren and friends of friends we take in and take on and love. We are lucky that way.

Holding the dream of the last child with so much love and anticipation. With worry about our housing, about more months of sleeplessness, about money and energy and weaving a new relationship into the family with each of the other kids. We are preparing more this time, building a team, asking the hard questions now, and making time to unpack the wounds. It’s a different kind of nesting to the first child. There are so many beautiful memories and so many dark ones. Tam and Luna float about us, light as moths, brief as butterflies.

We’ll do our best by you, littlest love. You have such a beautiful, imperfect, loving family waiting to welcome you. We have been so lucky in these dreams, and the moments blur together and become mundane and ordinary.

Then some artist fills the world with such beauty and sorrow and grandeur. And I remember the first time Bear gazed into my eyes when I was rocking him to sleep and how deeply moved I was. I remember Star resting her head on my shoulder in the hospital after her knee was torn. I remember getting ice cream with Nemo and debriefing a difficult appointment. I remember bathing Poppy in the backyard under the beautiful old tree. All these moments become framed in something that elevates them from the everyday. I sit in the dark theatre, weeping and grateful I have a heart that can still be moved. Grateful for these precious dreams and memories among the dark seas and storms. One day soon we’ll meet you too, little one. Hold on and keep holding on. We love you.

Love and Nightingale

/ Sarah K Reece / 1 Comment

My humanity is as defined by my willingness to wash the clothes as it is by my poetry. It’s a strange thought. There’s so much love in sharing the load of life, it’s so unromantic and yet so profound. Nightingale jokes that I buy the flowers and she buys the underwear. I love giving thoughtful gifts and being romantic. I am terrible at managing many daily life tasks such as updating elderly underwear or getting letters out into the mail. Nightingale is quite the reverse. Many years ago I’ve been romanced, even seduced. There’s something odd, yet intensely loving about doing the life things together. Our relationship was born out of that, in a way. Both single parents, both essential workers, both needed during covid lockdowns. We shared the load and reeled in shock at getting home to find dinner cooked, dishes washed, or children in bed. Flowers and poetry are lovely of course, but so is a clean kitchen sink.

We are opposites in some ways, outsiders of very different cultures, complimentary and also bewildered by each other. I’m the mad creative intellectual from poverty-ridden Elizabeth who borrowed Hamlet from the lending library so often that they eventually just sold it to me. She’s the wild defiant muso from respectable and educated Blackwood wearing black lipstick to musical theatre and getting drunk at karaoke. Oh, Elizabeth stop being such a scruffy grot! She laughs at me. Oh Blackwood, stop being so snobby! I laugh at her. She’s city, I’m country. She’s international, I’ve barely left my state. She’s private, I’ve spent years being raw in public. We weave it together with our shared love of culture and arts and family and our deep respect for each other’s skills and capabilities.

This year she buys me chocolates for my birthday. I buy her mobility aids when her back goes out. It all goes around in a circle. I think to myself how fortunate I am to have someone who somehow doesn’t lose me, despite the whirlwind of tasks, housing issues, work stresses, sickness, children, projects, and worries. Someone who will drop everything for an hour together with me, will move the earth to get us a night away. However far apart, is facing me, reaching for me. Buys me flowers. Puts on a load of dishes. How much stranger love looks than I used to think it did. How lucky I am.

Heartbreak and peace

/ Sarah K Reece / 4 Comments

I have spent much of my life attempting to understand what it is to be human. In the dollhouse distasteful reductionist language of autism, it would be a special interest of mine. Informed as much by my limitations that made my peers perceive me as less than human as it is by the relentless intellectualism and embarrassingly vulnerable heart to which I’ve pursued the manner. All autistic traits, I’ve since learned, all human ones.

“When childhood dies, its corpses are called adults.” (Brian Aldiss)

Growing up is about both finding and compromising your identity. (Philip K Dick)

I have brought children into the anthropocene. Into an age where they will be unlikely to be able to earn enough to afford their own homes. I have passed on genetics that have loaded the die. Poppy has had two dental surgeries for the same undiagnosed mysterious salivary insufficiency that destroys my teeth. I love children with no genetic link to me who are nevertheless mine, as much as any child is anyone’s, with a thread just as binding and just as fragile.

I have spent years refining my understanding of myself and the world, and years dismantling those frameworks when I fell off the edge of the planet into the void. Years exploring the wilds at the edge of my solitary experience of the world, and years exploring the shared reality of the domestic day to day life. Always polarised, always missing pieces of myself. Finding so many lost souls. Losing knowledge and memory as much as picking up new precious information. Looping the same mistakes over and over while I struggle to understand. Finding my way out of each kind of darkness.

Today was international mud day. Poppy’s school celebrates it and I so wanted to be there. But Bear was sick and couldn’t be out in the cold weather. My heart broke. I thought I would parent differently. I thought I would be there for everything. I work. I have other children. Nightingale has been sick. I juggle and I work hard and I have to let things go. Today hurt to let go. In any group or family, there’s a carousel of who takes the lead, whose event is special, who is sick or hurting, whose turn is next. It’s imperfect and it’s especially hard when coming from a single parent single child background where the answer to that question was once incredibly simple: this one child of mine is the focus. Now there’s more to balance, more complexity, more networks, more regrets. I compromise. Poppy waits for next time.

I resent compromise and I fight it. I sat at a show recently and a young person berated us for leaving them such a broken world and I remembered berating my parent’s generation for that, but I still wanted to say it wasn’t me! I still wanted to take my children far away into the wilds and live off the grid and away from single use plastics and be pure and pristine and at peace in the knowledge we contributed to none of it.

And I think what that would do to my children, the friends and family they’d lose, the opportunities lost to them, the network I’m part of where we care for and contribute to our world. I remember my public health training and the despair of the researchers who found the obsession with individual consumer based environmentalism had consumed everyone with guilt and distracted us all from the giant corporations and their captive regulating bodies that were permitting vast environmental atrocities for profit. I remember that compromise can be holy. It took me so long to understand that. That we remain in the world. That we accept the blemish and the stain. That we participate imperfectly in the giving and receiving of love.

Today I drove for hours through fields and forests, through mist and rain and sun and smoke. I drove to the ocean which was foamy and wild. I played Little Bear’s favourite song with him, which is Row Row Row your boat, and discovered he likes green juice. We looked at two caravans that could function as home offices while our damaged home is being repaired and rebuilt. The world unfurled before us like a flag. People were kind. Bear stomped about in his sweet little brown leather shoes, chuckling at chickens and nesting his head in my shoulder when a dog frightened him.

It was a heartbreaking day. It was a good day. This morning I pulled the car over to cry as the pressure of all my tasks and that horrible underlying fear of letting your children down pulled me into a whirlwind of meltdown. This evening I lit a candle and lay in a hot bath by an open window watching the sky darken. I watched Wallander on my phone and cried at the beautiful music in the credits. I thought about how vibrantly the male characters were portrayed and how distant the females were, passive and beyond reach for us because they are beyond reach for Wallander, loved and pitied and mourned from behind glass. What’s wrong with me, she cries. There’s nothing wrong with you, he replies. He’s right. And yet. How then should she live? Is she still human? Does she still have a soul, or is she what her father has made her?

I thought of how lost we are as a culture about trauma and grief, how bewildered. An autistic might say we have no scripts. What is the etiquette after horror and betrayal? We are bound by conflicting instructions that cannot satisfy: we must move on as if it never happened/we must be broken forever to show it mattered and prove our pain is real. Silent/passive. I think about birth trauma and Bear and the gaping wounds I carry for how he and Poppy came into the world. How I am silent and passive, I have not told those birth stories, I have not painted that pain. Something in me was broken and remains broken. I do not care to bring my pain to the public to defend it against a medical structure founded on the certain knowledge my experience is invalid. There are no scripts. There is lying alone in a bath, weeping when Wallander is kind and hurt. There is the power of naming it, recognising this wounded black beast as my own, however uninvited and unwanted. The ghosts that came with my children.

Parenting is all about living with ghosts. “Monsters are real. Ghosts are real too. They live inside us, and sometimes they win.” (Stephen King)

This is what it is to be human. The complexity and contradictions and imperfections, the threads both found and lost. My friend who died in her sleep with her face cupped in her hand and whose story was far from over. Who fought so hard for her life and to feel alive and not be overtaken by the beige. Too soon and too young and unfinished and unready. This is our life. The violin weeping with me and the dog downstairs shrieking at a rat running along the fence. The unspeakable and the benign tangled.

I lost my art again. I’m careless, I lose it often. I’ve made no art at all in years.  I’ve been hunting for it in therapy, pointing to the unspeakable stories I cannot paint, the blocks that make me afraid of my easel.

Yesterday I moved around the furniture to allow Poppy and Bear spaces in the studio with me, and I set up desk lamps and task lights and turned off, for the first time in 2 years, the overhead fluorescent lights. A chainsaw growl in my brain went instantly away and the space that has been terrifying became warm and safe. I forgot how much the environment mattered, how, like many autistics, I can hear and feel electricity, and florescent lights burn my brain. All the complicated nuanced poetry of my creative blocks fell to one side in the simplicity of shadows and lamps inviting me home. So frustratingly simple. I did not need to speak the unspeakable, I just needed to feel safe in a place where that might one day happen, now.

I stood on the beach today with Bear asleep in the car and the wind wild around me and a gift for grief and loss hidden in my bag and poetry came to me like the sound of her voice in the wind. We are human. We break, and we endure, we tell stories and keep secrets and we are gone far too soon.

Disability Support Workers, Autism and Self Care

/ Sarah K Reece / 1 Comment

Speaking as an autistic person, the parent of autistic children, and the organiser of supports for autistic folks, it is desperately important not to assume anything when it comes to self-care. Some autistic people have no issues in this area, but many of us have struggles! Self-care gets used to mean a few different things such as activities of daily life which are the things we need to do regularly to look after our bodies like hygiene and grooming, and mental/emotional self-care which are things we need to do to look after our mental and emotional wellbeing such as things we enjoy and find meaningful. Autistic folks can have struggles with both, in this instance I’m going to discuss physical self-care.

Culturally we are accustomed to children needing monitoring and support for self-care, but autistic children will often need more of both, and tailored to their particular challenges. We are less familiar with able-bodied adults of normal or high IQ needing assistance with self-care. This means we may fail to ask simple questions, we may miss signs of problems, and we may accidentally add to shame and secrecy.

Examples of Self Care Challenges

I have spent a lot of time in emergency departments with an autistic person in crisis, with doctors doing all kinds of tests before someone realises the primary issue is one of self-care, or that a lack of self-care is exacerbating and complicating the issues. We can have a lot of difficulty with activities of daily life such as

  • Drinking too much or too little water
  • Restricted eating, compulsive eating
  • Forgetting to or struggling to shower or bathe
  • Difficulty brushing teeth
  • Difficulty managing head, body, or facial hair
  • Difficulty trimming nails
  • Difficulty managing splinters, wound care
  • Difficulty managing periods
  • Not taking medications correctly
  • Not enough/too much/other sleep disorders
  • Dressing appropriately for the weather, managing dirty clothes
  • Managing continence
  • Managing pets and animals in our homes
  • Managing domestic tasks

Why are there difficulties?

These challenges can arise for many reasons. Autism can come with intense sensory attractions and avoidance. Some autistic people have a hypersensitive awareness of some body functions, and little or no awareness of others. Many can have difficulty with executive functioning which can make remembering and doing self-care tasks difficult. Sometimes people have never been taught self-care skills. Sometimes people have grown up in disrupted environments such as poverty, foster care, or homelessness where self-care was not modelled and they’ve normalised the lack. Often these issues become more pronounced when self-care isn’t adequate – the executive functioning is worse when people forget to eat, the mouth sensory aversions are even more intense when someone hasn’t brushed their teeth or seen a dentist in 10 years.

What can the outcomes be?

All of these can cause trouble – for example, one person may forget to drink because they never ‘feel’ thirsty. Another may drink far too much because the sensation of thirst is intensely unpleasant to them. Self-care challenges can have serious consequences for people, and in some cases can be life-threatening. It is absolutely possible even for educated, well-off, well-presented adults to have severe self-care challenges that they do not disclose. This is an interesting case study of a late-diagnosed 18 year old where self-care difficulties caused serious medical complications.

The consequences can also be more subtle and hard to see – for example someone who stops leaving the house because they are worried they may smell. People lose out on social and work opportunities and can become painfully restricted in their lives due to these challenges.

The role of shame and confusion

Many people carry intense shame and confusion about why they are struggling with these things. This is often even more severe for those who are diagnosed late and don’t have a framework to understand that their challenges are part of a disability, not a personality flaw. For example, someone may have perfectly physically functional capacity for continence, but have frequent toilet accidents because when they notice they need to use the bathroom they are unable to interrupt what they are doing and give that task a higher priority. They will continue to do the task in front of them – perhaps with overwhelming panic and dread, knowing they are not going to be finished in time to get to the bathroom but stuck and unable to switch tasks. If this person has never had this explained to them, the shame can be intense.

It’s also common to have many factors in play – for this example maybe we add in an experience of sexual trauma that adds shame fear and confusion to all things related to gentials, and a sensory aversion to the smell of urine making bathrooms difficult to spend time in, and a sensory aversion to wet hands making the task of toileting hard to manage.

Secrecy and putting it out of mind is a common way of coping with these issues. Unless directly questioned, many autistic folks with self-care challenges simply don’t volunteer the information, and in some cases are not aware that other struggles are linked to them and may simply endure or spend many hours and a lot of money trying to find causes for illnesses that are actually things like dehydration.

What does good support look like?

Sometimes disability support workers are the ones who notice a problem. We might be the first people who are spending enough time with a person to realise that they never drink, and that they often overdress in hot weather and have frequent headaches, nosebleeds, and fainting episodes. We might be the first people let in on the scary secret. We are sometimes the ones who help make sure the right people are linked into the information – I’ve sat in on more than one Functional Capacity Assessment and had someone breeze right past all their self-care struggles and forget to pass on information like their clinical malnutrition. I’ve also sat through assessments by people with no training in neurodivergence who spent the entire time focusing on the clients physical capacity and completely ignoring these hidden challenges. This is unfortunately common in the medical profession and adds a lot to shame and misery.

We can help by reducing shame and being safe to hold such personal information about someone. When we are supportive, we go at the person’s pace. If they are not ready to tell people like their GP, we build that trust. We accept that this is hard, and that being open about it is in some ways even harder. Sometimes people are very accurate in their fears about how the information would be received, and we can help them find safer people to ask for help.

We can normalise the challenges and keep them linked to the disability, not the person’s character. Disabilities can be tough to manage. Peers and peer experiences can somtimes help a lot. Anything we can do to help someone feel less alone and less freakish can be useful.

We can help externalise the challenges. Drawing a distinction between the person as a problem, and the person dealing with a problem. When we team up to deal with a problem, it’s less personal. We can recruit other safe people for the team too – Occupational Therapists or Speech Therapists with experience in Autism can be very helpful in understanding why some of these are so hard and helping figure out work-arounds.

  • We can help with prompting when the issues are around remembering and initiating tasks.
  • We can body double when the issues are feeling overwhelmed and not being able to focus
  • We can take notes in useful appointments and help people remember the strategies suggested
  • We can help make aversive tasks less difficult or stressful by telling jokes, playing music, planning nice things afterwards, breaking them down into little steps
  • We can remind people to tackle hard things slowly, to take breaks, to be kind to themselves
  • We can be companionable such as sharing lunch time together for someone who struggles to eat
  • We can check in to see how things are going in an unintrusive way
  • We can shut up and back off when the person is feeling swamped
  • We can plan ahead for the next time things are hard – for example if someone has struggles with self harm and wound care, we can help them find a good caring local nurse, make sure their first aid kit is well equipped, and normalise asking casually and privately about self harm during shifts to help reduce severe infections and scarring.
  • We can educate and remind people eg. I wonder if you feel awful because you’ve forgotten your meds?
  • We can accept rigid thinking, validate feelings, and help people care for themselves without directly arguing with them eg. I know it’s very annoying the doctor insists you eat something with this medication, do you feel more like cheese and crackers or yogurt?

Really good support in these areas is built on a solid relationship. The person with the challenges needs to feel somewhat safe and respected. Sometimes they will not see their challenge as a problem which can mean that for them they have to put up with people around them ‘making a fuss about nothing’. This can be managed where there’s some trust. I support someone who has no sense of food safety at all, but accepts that I ‘fuss’ about things like chicken that’s been left on the bench overnight. To them it’s a needless annoying trait of mine, but they value the support I provide enough to put up with my ‘foilbles’ about food safety. I accept that this is their perspective even as I ask them to ‘bear with me’ while I replace bacteria laden chicken with a fresh meal.

People are more likely to hide, lie, or shut down and forget these issues when they don’t see a way of handling things that preserves their sense of dignity. For them, the trade-off simply isn’t worth it. They’ve already tried and failed to do any better at managing it than they are, the last thing they want is for it to have a massive social cost too. It’s often up to support people to make sure it doesn’t. A lot of health and healing comes from finding ways to bring the unspeakable out into the open in safe places, whether that is ‘psychotic voices’, disordered eating, or incontinence. When we work so closely with people in their homes, we can be a huge part of helping make at least that space one in which it is safe for them to have the disability and the challenges that they have, and to still be seen and celebrated as whole people.

Navigating Hurdles to using Disability Support Workers

/ Sarah K Reece / Leave a comment

I’ve previously written about Understanding Hurdles to using Disability Support Workers. Here’s some approaches that can be helpful when you’re dealing with hurdles like those. Not every agency or organisation or support worker will be on board with all of these options, they all run in their way and have their own limitations – however even if they can’t help, they should never shame you for what you need or would find helpful. You have every right to ask, to advocate, and to try different approaches and discard what doesn’t work for you. Remember it’s never just going to be you that finds this hard, or that needs that approach. When we ask, we make it a little more normal and a little easier for everyone else too.

Start with the Least Stressful Task

Pick the easiest task. You might have complex support needs and circumstances and be totally overwhelmed, so maybe this isn’t the week for someone to come and assist you in showering, or taking notes during your psychiatrist appt. Sometimes it’s easier to get started with the simplest task. That might be someone to wash the dishes a couple of times a week. It might be driving you to the physio on Thursdays. It can seem stupid to book this in when there’s so much going on and so many unmet needs but just getting a thing handled for you is an excellent place to start and can get past the block and freeze to having any support at all.

Avoid Relationships

Don’t set up a Support Worker, set up someone who functions as a taxi driver or cleaner. If the relationship with a stranger is part of the stress for you, start with an impersonal service. You can request a Support Worker or cleaner do tasks while you’re not even in the room or house. You can ask to be driven to an appt and home and explain when you book that you’re stressed by conversation and to please not engage with you. Deal with having them around before you have to adjust to having some kind of relationship. Sometimes this can make it manageable.

Just work on the Relationship

Alternatively, forget the tasks for a bit. Just do something you enjoy and get to know this other person. Play a board game. Take a walk. Go for a swim. Watch a movie and discuss. Do downtime not stressful stuff and build a connection.

Delegate

Get someone else to hire and supervise. If you have a trusted friend or family member, they can help get the ball rolling for you.

Do a Graded Increase of Supports

Start small. You might be funded for 30 hours a week but the thought of that is terrifying even though you really need it. Maybe you need to start with 2 hours with a Support Worker. Organisations may try and jump you straight to a full schedule of supports and for some people this is completely the wrong approach. Once that 2 hours is feeling manageable, perhaps in the third or fourth week, you might want to extend it to 4 hours, or keep it at 2 but get them in twice a week. A soft, flexible start like this can be essential to having the support be helpful instead of feeling like a crisis to manage. Not every agency or worker will allow you or be able to do this, but some definitely will.

Get a Lead Support Worker

Start with an experienced Support Worker, and as they learn about you and your needs, get them to onboard and train your team. They can be the key or lead Support Worker and you can use them to help with communication, relationship, training, and rostering. They can function as your executive assistant and the team leader.

Keep them Outside

If having people in your house is terrifying, don’t let them in. I have worked with many people who have needed all supports to be out of the home at first. You can do online support where someone calls or video calls and helps with your admin. You can meet in a public location like a library or park. You can sit on your porch together. You can get in a Support Worker to help you in the garden and do that together every week for as long as it takes to feel safe to let them in your house. You can have a friend or family member with you every shift at first. You do not have to do the ‘typical’ support stuff if that is just beyond you. We are here to actually help and sometimes that means being really flexible, really gentle, and moving at this very slowly.

Just be aware Support Workers are people who do need access to shelter, water, and toilets so you may need to make sure there’s other options if they can’t use your home.

Alternative communication

The entire disability sector is oddly oblivious to the need for a variety of options for communication. Many people are deeply stressed by phone calls and prefer text messages. Or find emails impossible and need mail. Or do best on video calls. If you find discord easy you are absolutely allowed to ask to communicate with your providers and Support Workers there. Some organisations lack the flexibility to engage in different ways, but many smaller ones or independents will absolutely understand this need and it can make so much difference to managing a roster.

Explore your Overwhelm

If this is one of the big issues for you it might help to explore and understand it some more, perhaps with a therapist or friend. Good Support Workers will absolutely be able to help with this, but there’s many things than can drive overwhelm and some of them will actually get worse if we approach our Support Worker through their lens and recruit them into the same factors. Some more thoughts here: Finding Ways out of Burnout and Overwhelm.

Guides and checklists and labels

If you set up the spaces in your home you are using Support Workers so they can easily tell what is needed, you will have less irritating variation, and less need to train them. This is a great option if you have a larger team, a lot of staff turn over, or a horror of training staff. If this makes you feel like you’re living in a hospital or facility then absolutely don’t. However many multiple people households, especially with kids or multiple people with disabilities, find having labels and clear systems can make a massive difference to the smooth running of the home. The kitchen is an excellent place for labels on draws, photographs of what content should look like, labelled food storage, and simple check lists of what resetting the kitchen looks like. In my home I tell staff that if they can’t work out where something goes, leave it on the bench and I’ll go through them at the end of the shift – I vastly prefer this to losing items that have been hopefully stuffed into random cupboards!

Never have just one support worker

This is a tough one. When getting started has been hard and you finally have a good one it’s so tempting to stop there. A basic rule of thumb is that every participant needs more than one Support Worker, and every Support Worker needs more than one participant. The degree of vulnerability if you only have one person is so high and it runs both ways. Support Workers need to know they can take a sick day without your world falling apart. You need to know a Support Worker can leave without the sky falling. Losing a good Support Worker always sucks, I hate it. But when you have at least two on your team you can limp along while you recruit. If you only found one good Support Worker in the world, it can be an impossible ask to look for another one, and to go from someone who has known you for months or years and is now highly attuned to you, back to the start with someone who has no idea about your story, your capacity, your needs, can be more than people can deal with. Don’t stop with one. Good, experienced Support Workers know this and will encourage and help you not to stop with them.

If you’ve struggled to get going with Support Workers and have found something else that has helped you, please do comment or message me and let me know. There’s so many folks out there feeling stuck. I have my own deeply personal experiences of how hard it can be to let people help, how essential it is to feel safe..

I hope this gives you permission to go off the beaten track if you need to. Hurdles are common and there’s many ways around them. Good providers will create an alliance with you to help navigate them, and there’s many, many great Support Workers out there who are keen to help in the ways that will work best for you. These ideas can be put into practice with any providers or independent Support Workers, and you’re certainly welcome to get in touch with me and my team if we seem like a good fit. Best wishes and take heart. You’re not alone, and for most of us it gets easier.

Understanding Hurdles to using Disability Support Workers

/ Sarah K Reece / Leave a comment

I have been a Disability Support Worker since 2019 and began employing other Disability Support Workers to help ensure my clients actually survived when the pandemic kicked off in 2020. I also run the NDIS plans for my family members which means hiring Disability Support Workers to come into our home, so I get a fabulously rounded perspective on this one. I can tell you that good Support Workers change lives. The relief of competent support is profound, especially when things have been bad for years. It’s like the storms don’t go away but you finally have a roof on your house to keep out the weather. Support workers can also drive me batty, they are exhausting, daft, unreliable, and uncomfortable as hell. They can also be an intensely vulnerable, isolated, and dehumanised workforce. There’s a lot of perspectives to consider.

One I want to talk about today is not shared very often. I hate hiring Support Workers for my family. It seems so strange for those of us with NDIS funding – we so need the help, we’re so relieved to finally have a plan, there’s all the weird survivor guilt of having access to a resource when many are denied and in need, and then there’s the gap between what we need and what have to do to get it. This is a small gap for some folks. They call a couple of agencies, get onboarded, and away you go.

For me and many like my family, it’s just hard work, and this work is largely invisible and rarely discussed. I don’t like the uncertainty, I don’t like the getting to know each other part, and I don’t like the energy it takes to deal with people coming into our space and not yet knowing how to do things our way. It’s stressful. I don’t like having to look around and interview people. I hate onboarding a new agency. I hate having bad experiences, being patronized, lied to, bullied, manipulated, harassed, and let down. It takes spoons and bandwidth to find, onboard, and train staff. It takes savvy, patience, and time. It takes optimism, hope, and the belief that our needs are legitimate and can be supported. It takes getting over the intense embarrassment of asking/letting someone else do a stack of tasks that I feel are my responsibility. It takes letting people see us, our limits, our mess, our struggles, our bad days, me in a dressing gown at 6.30am getting kids ready for school, a doom box of paperwork with the important document for today’s medical appt lost in it somewhere, getting a call to say someone’s had a meltdown and the Support Worker doesn’t know what to do. Things that make me feel vulnerable. Things that make me feel like a failure. Things I don’t want seen that are now painfully visible and picked apart in functional capacity assessments and shift notes.

So if this has been hard for you too, take heart. You are not crazy, or ungrateful, or alone in this. There are many, many things that can make getting started with Support Workers difficult, and there are many things people have found can make it easier. People can and do navigate these hurdles and wind up with great support. Being able to understand and talk about the hurdles in the first place can help.

I’ve seen people who have never had a Support Worker, folks who had one amazing one they lost at some point, and folks so fed up with the workers they’ve tried they’ve just run out. It’s easy to get stuck. Many of us find the messy ‘first draft’ process just exhausting. We want to jump straight ahead to the part where things are running smoothly. The workers know us, they are attuned, they are responsive, and they know where the tea towels live. Dealing with the process it takes to get there… that’s another matter. The good part of all of this, the part that’s worth hanging on is this. We used to get block funding delivered to organisations who decided all of this for us. What support we needed, which workers they hired, and who was eligible. As much as I hate the workload, I love the freedom and flexibility. I get to hire the people I want, to do the tasks I actually need help with, at the times and in the ways that suit me best. I have the choice and I have the control. The hurdles come with that, but the freedom is pretty appealing when you remember how the system used to work.

Diversity Hurdles

Diversity is a common hurdle for folks. The main training for Support Workers is a Cert 3 in individual support. It’s generally focused on stable disabilities that don’t change a great deal over time such as blindness or an amputation, and on providing personal care such as assistance with showering, feeding, continence and so on. If you are dealing with a disability that fluctuates radically, has an unpredictable course, and/or includes mental health challenges then you’re a little out of the wheelhouse of a lot of the workforce. If you’re trans, or polyamorous, or CALD, or live in a remote area, or immunocompromised, or nonverbal, you’re dealing with all the extra issues of ignorance, confusion, stigma, or just unsuitable support from worker who don’t speak your language or understand your experiences.

Organisational Hurdle

If your disability impacts your organisational capacity this can also be a huge hurdle. Researching, interviewing, training, and managing staff can seem like a ridiculous extra burden if you’re the kind of person who forgets to eat without reminders.

Communication Hurdles

If your disability impacts your communication or relationship capacities you can find yourself swamped by the bizarreness of a system set up for people with disabilities that presumes you can communicate, negotiate, provide feedback, and regulate a bunch of relationships.

Poverty and Housing Stress Hurdles

Poverty is not spoken about enough in this area, but the power dynamics and relationship differences between support for those in severe poverty and those in good circumstances is profound. NDIS is not intended to relieve poverty or replace any other services which means when other services fail, we can have appalling situations such as one of my clients being funded for daily support but being homeless and his phone breaking – how can we even find him when he’s sleeping rough in the park? If you’re struggling on a low income or falling through gaps in other services, Support Workers and all the other NDIS resources can be so much harder to implement.

Trauma and Anxiety Hurdles

Trauma is a common and significant challenge in this space. Many of us have had abusive experiences in personal relationships, medical settings, and with providers. It takes a lot of courage or desperation to let strangers into our lives and homes. I remember once I was having a horrendously bad week, and a friend kindly arranged a cleaner to come to my home. I really appreciated the idea but I’d never had a cleaner visit before. I was so overwhelmed and embarrassed it caused a panic attack and I cancelled the visit – then felt awful about that and ashamed to let my friend know their kind gesture was too much.

What if getting help makes you dependent and even less functioning? What if you lose the help at the next plan review, just when you were feeling safe and secure and things were working? What if a Support Worker takes advantage of you, steals from you, manipulates you, deceives you? These fears are significant barriers for many people and can mean vastly underspent plans and high risks for people with disabilities who are not getting basic needs met.

Overwhelm Hurdle

Overwhelm is a constant, chronic, harrowing state of existence for many of us and trying to add in supports can be just more demands to feel swamped by. Inexperienced or mediocre workers need a lot of hand holding and this can be more energy than it’s worth.

Abelism Hurdle

Ableism is also a huge barrier for many of us and this goes two ways. Support Workers who don’t understand our disability can bring a lot of ableism in with them and it’s exhausting. They might look at your functioning body and say ‘you don’t need help with meals’, because they don’t know enough to recognise that your lack of hunger, anxiety about eating, severe sensory issues, and no cooking skills mean you are clinically malnourished and living on a starvation diet. You need support with planning, buying, and preparing food, and probably with reminders to eat and assistance to make it a more comfortable experience. Support Workers who don’t understand this can add to your sense of shame and invalidate your real needs in ways that leave you worse off.

We often have our own ableism that trips us up. Personally I’ve found this is often more severe for invisible disabilities, and more likely for issues that went undiagnosed or misdiagnosed for a long time. If you’ve spent years being told you’re lazy and just need to try harder, it can be mind bendingly difficult to ask a Support Worker to come and do that task for you. You shouldn’t need the help. It’s a waste of their time. It’s a waste of tax payer money. Someone else probably needs it more. It’s not that big a deal.

Specific Needs Hurdle

The more specific and inflexible your needs are, the more time you need to invest in training your support workers to do things correctly. There’s so many things that can mean our needs are very specific – because you have a life threatening allergy, a complex household with multiple disabilities, severe sensory sensitivities, a recent history of sexual assault, or OCD specificity about how your cleaning needs to be done. The general guide is: the more flexible we can be about our support the less time we need to invest in training and onboarding. The more we need things done a specific way, the more we need to educate, create checklists, have allergy paperwork on hand, and so on.

There’s nothing wrong if your needs are specific, I’m not judging. We all have them in some areas of our lives, and we are often pretty oblivious to how not intuitive they are until someone else blunders through and whilst trying hard to be helpful actually makes a mess of things. If you, like me, have a dog that must be put outside and have the laundry door closed when the last person leaves the house, you can’t assume a Support Worker will know to do that. And if you, like me, get busy and disorganised and forget about that, then you will absolutely come home to find your shoes demolished on the back lawn!

The first time someone helps you make a curry and cuts the onion into wedges when you need them minced finely so you don’t have chunks of slimy onion in your mouth when you’re eating, you will realise that what’s normal to us is not everyone else’s normal. If it’s important you’ll need to communicate it, and to do so respectfully and in an accessible way where your staff are able to remember it and get it right.

There’s many things people do to help overcome hurdle like this, and I share some ideas in this post Navigating Hurdles to using Disability Support Workers. But step one is recognising that the hurdles are real, even if you can’t easily understand or articulate them. We start by finding solidarity in our peers, finding we are not alone in our struggles, and moving away from shame and towards compassion. It is at times hard, and that’s okay. The opportunity to choose and create our own supports is truly an incredible one, and here in Australia we are the envy of the world for the freedoms offered by the NDIS. I am reminded of a line from a favourite book:

What she had begun to learn was the weight of liberty. Freedom is a heavy load, a great and strange burden for the spirit to undertake. It is not easy. It is not a gift given, but a choice made, and the choice may be a hard one

The Tombs of Atuan, Ursula K. Le Guin

Don’t give up, there is excellent, safe, inspired support out there.

Unpacking success in business: vulnerability, mistakes, and inclusion

/ Sarah K Reece / 5 Comments

Hello, lovely ones.

I have some wonderful news to share and I’ve been trying to share it for a while now. My business is finally a success.

Isn’t it funny how sharing our successes can make us feel so vulnerable? I’m very used to sharing things most of us prefer to hide. I’ve found value in it and learned how to deal with the downsides. I’m intimately
acquainted with failure and loss.

I’m less familiar and in a lot of ways less comfortable with sharing my wins. This is a big one, and right now I can finally feel it, and it’s not too terrifying to share.

20 years ago I wrote myself a goal list for my life. I wanted a lot of things, but my main ones were a job that paid well enough for me not to need Centrelink (welfare), a safe place to live, and a partner and children. They are not exceptional asks. But for someone like me they have been the work of a lifetime.

For 20 years, my work has tangled with my identity in deeply painful ways and brought a constant taste of failure to my life. I exposed myself as different before I found a safe place to stand with income, and that was risky, and it burned me. I have spent a lot of my life alone and naked in front of the crowd. And that created a community for me, it built connections I could not otherwise have created, and it humanised me in a world that saw me as other and less. It also closed so many doors, outed me early, and left me on the sidelines in a race that saw me as a dangerous liability instead of a resource to invest in. Self-employment was my remaining viable option, and it has been a brutally challenging path.

I have finally climbed my personal Everest. Work and money. I am officially broken up with that abusive relationship Centrelink. I’m financially independent.

It’s been scary to tell you. I didn’t feel successful, or safe, or like I’d made a real achievement, it just felt like a break in the storm, with more rains coming. What if shouting about it brought down an avalanche? What if I stumble and it all falls apart, and I have to crawl out of the rubble and tell you I’m back where I started? What if I fail again?

I will fail again.

I have been quiet, busy, kept my head down wrestling with it all. I have learned so much. I am now celebrating 4 years in NDIS space.

I also want to sing my achievements from the rooftops, because it looked so impossible for so long. So many people have helped me or struggled with me on this road, and I know there are so many other people like me out there wondering if it can be done.

When I started employing people I had three goals:

  • To do really good support work for our clients, something approaching the level of attuned and responsive care provided by good unpaid carers
  • To take really good care of our staff which is very rare in this industry
  • To run the business well so we all had security

I have to some extent achieved all of these, using a combination of approaches such as kaizen and co-design, values such as inclusion, and skills such as my capacity to engage in a vulnerable and authentic way with people I don’t know. Unlearning what doesn’t work and ignoring what everyone else is doing that creates the outcomes I don’t want has played just as important a role as finding the tools and approaches I need, and encouraging the values and methods to emerge from the process.

Sometimes I can feel a sense of accomplishment, but a lot of the time I’m just struggling with the things that aren’t working well yet. My fourth goal was added a couple of years in:

  • for my role to be a good fit for me

All are still in progress, and by the nature of this work always will be, but this one has come a long way. A couple of years ago I was lying face down in my driveway in meltdown over a distressing experience in this work. Most mornings I woke up hating my job. Most days I now wake up feeling reasonably good about it. There’s further to go but the profoundly unmanageable demands on me have been drastically adjusted and the fit is so much better.

Recently I have done a thing that clicked with me, that made me feel successful in a way nothing else has. I sent an email authorising paying my staff a Christmas bonus. There’s enough money in the business to pay me, and to give something to them too. I was walking on clouds for a week.

I’m autistic. I have ADHD. I have an unpleasant collection of chronic illnesses and a pain condition. I have mental health problems. I have a trauma history. I have struggled with poverty for much of my life. I have been homeless. We are plural/multiple. We are looking after a family with young children. And we are running our own business successfully enough that we no longer qualify for welfare.

None of those things went away. We are still plural. We still have ADHD. The pain and chronic illnesses have backed off and we’ve learned how to manage them well enough to have time to work – but even then I’m not working full-time. No one on my team is. Some weeks I manage about 10 hours and just keep the fires burning. I did not have to be cured of any of my disabilities to achieve this. I had to get the right support, the right advice, and to survive the shitty learning curve and all the mistakes I’ve made and the people I depend on have made.

One of my favourite quotes:

An expert is a person who has made all the mistakes that can be made in a very narrow field.

Niels Bohr

I am becoming an expert by the simple maths of running out of mistakes I can
make. And bringing with me a stack of advantages, and resources I’ve found, and playing to my considerable
strengths.

So what exactly have I achieved? I usually employ around 10 staff, most of whom are Disability Support Workers. We do something very unusual in NDIS space, which is to use a relationship-based, team approach. Most of our clients are neurodivergent and/or dealing with mental health challenges.

I now draw a regular income alongside my staff. I have taken out my first-ever loan and bought a car.

I used some of the profits to buy a caravan because we had 3 clients and 2 staff dealing with homelessness just in our second year of running. The homelessness resources here in South Australia are hideously underfunded and under-resourced. I have had staff sleeping on my couch and once had to drop a client off in the parklands with a warm jacket and a cheap phone. So I bought a caravan for emergencies and temporarily housed 4 people last year.

I have kept two highly vulnerable clients alive during the pandemic, fighting people up to the Health Minister of NSW and burning nearly every personal and professional bridge I had to do so. It worked. It was messy and exhausting but they were both at extreme risk including covid exposure and for one illness requiring ICU stays, and they both survived.

I’ve employed 39 staff total in this time, with a range of backgrounds and circumstances and many with their own disabilities. Some have been ridiculously overqualified but blocked from accessing employment due to issues like racism. I have been a step towards a bigger goal for people who just needed someone to give them a chance.

I don’t recommend starting a new business a few months before a pandemic kicks off, it’s stressful. We’ve survived a lot. Coping with $33,000 of unpaid invoices that took 9 months to resolve. Managing the theft of $23,000, changes to the award rates that looked like they would kill the business, and so many HR and SCHADS issues I’ve lost count. I have floundered as an inexperienced boss with disabilities myself and no road map on how to do that well. And yet, we’re here.

All our clients survived, some have moved on, some have stayed, many have begun to thrive, and some have had proper support during extremely difficult times in their lives. People who were trapped in isolation now have safe networks. People are getting fed good hot meals they enjoy. They are getting dental care, replying to their emails, getting their homework done, having birthday parties, passing rent inspections, getting first aid for self-harm from someone kind, decluttering their home without shame or pressure, getting the kids out to the park to play, having someone they can talk to about the voices, being able to use a clean bathroom or help to find a GP they can trust. It’s the most mundane and domestic things, and the most sublime and profound. We clean toilets. We change lives.

I’ve made plenty of mistakes, sometimes horribly publicly, and certainly sadly burned some bridges in desperation, but I’ve hung on, dusted myself off, got up and tried again.

As this team has come together the business has finally clicked over from being a hobby that pays for itself but not much more, to being a legitimate income for me. The nature of this work is that it’s in a constant state of flux. New staff, new clients, new NDIS rules and SCHADS conditions. Transitions in and out like the tide. I’m still refining the model, and there are still things I hate about it – like being constantly on call and struggling for work/life balance, but it’s easy for me to drown in everything that still needs attention. I wanted to stop for a moment and call attention to this impossible thing. I pay myself every fortnight. I pay taxes. I pay staff. We help people. We make a difference.  Some folks couldn’t find what they needed in support workers from other businesses. They are teaching us how to be better support workers and using us to bridge the gaps in their lives between their capacity and their dreams. We learn and refine each time, and something important emerges.

One of the key things I’ve learnt is that I can hire inexperienced disability support workers and train them myself, because I have those skills. But I cannot hire inexperienced administrators because I lack many of those skills and I can’t do the training. That was hard, and I struggled a great deal to depart from my preferred approach of hiring for values and then training people into the role. My disabilities drastically impact some of my administrative capacity. I can’t train people to do things I can’t do. So experienced administrative roles such as my business manager and my PA who can problem solve and experiment and function independently have been tremendous assets.

This job is all about people which means good HR is not optional, it’s the foundation. I’m on my fourth company so far. My darling wife Nightingale has provided stability and helped with tasks I’m truly bad at such as running the roster. I am time blind and have dyscalcula, which impacts my ability to get dates and times correct. No one in their right mind wants me doing scheduling. I once famously took my entire extended family to the Willunga Almond Blossom Festival 2 weeks early. I’ve needed people on my team who are better than me at essential tasks, and that’s taken a lot of time and a decent amount of luck.

My employees have added their knowledge and skills. Some have had terrible previous experiences and come in with considerable work-related trauma we’ve tried to use as antigoals to create safer policies and culture. Some have had experience in advocacy, community services, and management and they’ve been generous with that experience. I’ve gradually begun to find ways to manage some of my disabilities in this context as we’ve created a more inclusive workplace for each other.

I’m passionate about good service design. My years of experience in community services, peer work, alternative mental health, government, consulting, my training in public health, and my lived experience in disability and as a carer make me the right person to set up a business like this. I have found a place where my strengths are relevant and can make income. I have found a model where I get to provide services for some of the most marginalised people and still get paid.

I have had to sacrifice too. In the middle of a family lunch, there will be an emergency with a client rushed to hospital and I’ll be on the phone sorting it all out. I had to shut down every other wing of my business for 3 and a half years to focus on getting this running right and dealing with the pandemic. My ADHD brain found that nightmarishly hard at times. I have made almost no art and had almost no side projects. I have lived and breathed my family and this work. 6 months ago things stabilised enough to allow me the time to be able to re-open some select consulting work and that has been a joy. As much as it’s satisfying to figure something out myself and create it, it’s doubly so to have the kind of reach that means other people, organisations, or businesses can make something good too. I have honed a lot of expertise and it’s exciting to use it to support other people’s projects and watch them succeed.

Not everyone can do this. If I was still super sick this would be impossible. But many of the things that make this impossible have nothing to do with me, my disabilities, or my limitations. They are needless thoughtless exclusions that cut people like me out of the narrative of work and money and cast us away. It should never have taken me 20 years to get here, and it should not have been so hard. So much of the advice and training was worse than useless, and the intensity of trying to prove myself and prove my value as a person in this world has scarred and savaged me. This is not inspiration porn. It is not a stick to beat yourself with. This post might hurt to read, and if it does, I am so very sorry. I have cried a thousand tears. I cry with you. It isn’t fair and it shouldn’t be like this.

This may be a relief to read, for all those who have fretted quietly in the background about me. I remember being told once, there’s so much goodwill out there for you, but no one knows how to help you. I did not fit.

This may be hopeful to read. You too may not fit. Or you may be wondering if your autistic child has hope for escaping poverty if the people who apply for jobs at your business are worth taking a risk on if the dreams you have are in any way possible. If multiple/plurals can function in the world in some way or are doomed to be trapped in poverty.

Yes, we can, sometimes. This isn’t just about me, it’s about the context in which I’m doing what I do. I have had a raft of support, opportunities and strengths, alongside the pantheon of losses, impairments, and challenges. I’m still learning what’s made this finally work for me. I’m still finding words for the costs. I’m still figuring out how to stay afloat as things change. I’ll keep sharing honestly. Because all of us deserve financial security, we deserve jobs and public identities, and we deserve to be seen as part of the solution not just a social problem to be solved.

This is my story and it’s beautiful and painful. I’m sharing it because it takes courage to change the world and we are all changing the world. I have made a thing and it’s beautiful. I climbed a mountain. My feet are bloody and I have lost some toes. Failure is terrifying and necessary. Success holds its terror, it obscures and dehumanises and makes us want to keep our vulnerabilities more secret, it carries us to new heights to fall from, it is embedded with prices we didn’t realise we were paying. And it’s beautiful and powerful, the view across the horizon. Paying for Poppy’s dental surgery last year without needing to ask anyone to help. The illusion of independence and self-sufficiency, the protection from the consequences of our flaws and our soft underbelly, the place where we connect in humility that’s now covered by scales and cloth and so hidden we can’t even name the loneliness. I can afford my medications. I pay rent. I feel ashamed and survivor’s guilt for having enough in a capitalist culture that keeps the vulnerable below the poverty line to incentivise work. I wrestle with my place in a broken system when I am no longer at the bottom of it. I try to buffer the people in my care from the worst excesses of it.

Come raise a glass with me. I made a good thing. I dreamed something out of reach and have wrestled it down from the gods, eaten lightning. Come share my fire.

Journalist seeking experiences of plurality/multiplicity

/ Sarah K Reece / 1 Comment

I’ve had a chat with Alana who is looking to write an article about this topic and hoping to speak to folks with lived experience. I don’t know her personally so this isn’t an endorsement, but her values sound aligned with my own around raising awareness in a manner that humanises and holds space for the diversity of experience so I’ve offered to reach out through my networks for her. Here’s her intro:

I am writing an article on plurality and plural pride. The story will look at plurality against the backdrop of pervasive prejudice and poor understanding of dissociation, especially among mental health professionals. I also plan to discuss internal family systems, a therapeutic modality that normalises the existence of parts, to suggest shifts in on how plurality is understood. 

The story has not yet been commissioned- I am in the process of writing a proposal.

I am a journalist and registered psychologist.

I hope to speak to people who identify as plural. I am interested in how parts are experienced. I am also interested in the experience of stigma.

I hope to use names in the story.

I have included my contact details below. For anyone who is interested, I’d be happy to chat informally before you decide whether or not to take part in the story. If you do decide to take part, I would show you what I write about you and seek your approval before I submit the story.

I have pasted below links to some of my article. The articles are fairly old. (I am returning to writing after some time.)

Best, Alana Rosenbaum

0412 806 475 alanarosenbaum@me.com

Research opportunity – the eating disorder voice

/ Sarah K Reece / Leave a comment

Phoebe is doing a PhD in the UK exploring the ‘eating disorder voice’, and has asked me to share their research in the hopes of reaching a more diverse group of people to be involved. I don’t personally know Phoebe so I can’t vouch for them, please take care to verify anything you get involved in. I’m always excited to hear of research in this area, it tends to be very isolated and disconnected between the different diagnostic categories and there’s a huge need for linking up and learning from these varied experiences.

Phoebe writes:

I am a trainee clinical psychologist based at Lancaster University in the UK.

I am completing research exploring the eating disorder voice, a voice which comments on eating, shape and weight. This is a common experience within the eating disorder community. Currently little is known about the eating disorder voice, with questions about whether it is more consistent with the experience of plurality/multiplicity, voice personification (when the voice has it’s own agency but not considered part of the self) or other multisensory experiences. My research aims to explore these experiences in relation to eating disorders further with young people who identify as female.

How to be involved:

I am hosting a webinar on Tuesday 5th October 2023 at 6pm-8pm (UK time) via Microsoft Teams. The webinar will be confidential and anonymous.

Email p.dale1@lancaster.ac.uk to book a place.

The webinar will be an open space to discuss your own experiences. I will present some of our findings so far to explore our current understanding and ask for feedback on whether those attending the webinar feel it represents their own experience of multiplicity or voice personification alongside an eating disorder.

I’m Hiring

/ Sarah K Reece / Leave a comment

I am looking to add to my team of Disability Support Workers. I can offer about 20 hours a week, happy to share the hours between more than one person. Our work is relationship based so onboarding is a gradual process, not a sudden diary full of clients.

I’m also looking for someone for Personal Assistant work. Usually this person does some PA work and some work as a Disability Support Worker, but I’m flexible about the arrangement. I have about 8 hours of PA work a week needed. Some PA work is online from home, some is at my office in Aberfoyle Park. Experience in admin and supporting people with ADHD will be well regarded.

People with lived experience of disability, mental health challenges, neurodivergence, and caring for others are particularly encouraged to apply.

More info here on How my Support Teams work and the Requirements of the Role.

These are casual roles under the SCHADS award.

Please get in touch if you feel you’d be a good fit, or to ask any questions. Please be human and give me some real info I can engage with not just a resume or list of qualifications.

Plurality/DID sensitivity reader wanted

/ Sarah K Reece / 1 Comment

Hey folks, I’ve been approached by a person who’s written a screenplay and is looking for a sensitivity reader to advise about the character with DID. Contact me if you’d like me to pass on your email.

My main focus when I engage with any media about plurality/DID is does it make it clear this is one representation of it, or does it imply this is the norm and everyone’s experience? The former makes me happy.

You can check out a couple of my reviews of other media here:

My favourite representations so far include Burton’s Alice in Wonderland, The Spiral Labyrinth, and Jam and Jerusalem.

Mental Health Master Class

/ Sarah K Reece / 1 Comment

Hey lovely folks! I’m thrilled to be getting back into my workshops. I shut down all my public speaking, workshops, and consulting when the pandemic took hold and it’s absolutely wonderful to be dusting it all off and getting back into it. Keeping my clients alive and figuring out how to hire folks to be their teams was absolutely consuming and I simply couldn’t juggle anything else for the last couple of years. Yet I have missed it so much, there’s a special kind of magic in these spaces you don’t get in one to one work. Groups have so much power to validate and support each other. Nightingale is kindly sorting out the important things like room bookings and dates so things actually happen and I will be turning up to the correct location and on the right day!

This time I’m running a session on mental health on Friday 3rd of March, so if you’re interested share this post. This is a fabulous introductory price so grab your tickets asap. 

You will get to spend a day redefining mental health from my unique perspective. Mental health training is all too often divorced from the real world. Services are imperfect, frameworks have limitations, and sometimes our madness is what saves us. Embrace the contradictions and find hope rather than confusion in the complexity. Support others to find their own meaning and discover the most useful resources they navigate a mad world.

When: Friday 3rd March, 10am – 4pm 
Where: 19 On Green*
How Much: $300** (GST included)
If you don’t have NDIS funds and are experiencing financial hardship, please contact us. Some reduced price tickets available. 
admin@sarahkreece.com
Where to Book: https://www.eventbrite.com.au/e/545817403547

*Fully mobility accessible venue with breakout room.
**NDIS payment accepted for self and plan managed participants, please contact us if you need an invoice sent to your plan manager. 

I would love to see you there. This is suitable for people with no experience at all, or those who work in mental health but would value a fresh perspective. Carers and people with lived experience are very welcome.

My intro to mental health talk

/ Sarah K Reece / 1 Comment

Hey lovely people! I’m running a session on mental health on Monday, so if you’re interested share this post, and if you’re available grab a ticket asap.

ID: flyer with prominent teal artwork “The Gap”. A downcast individual stands alone on an island in the ocean. On a different land mass a group are talking and gesturing at them.

Even before the pandemic, it could be tough to understand and navigate mental health and supports. This session is an intro to my master class and will give you a starting point for making sense of different approaches to mental health and how to help others.

When: 6th Feb, 11am – 12pm
Where: 19 On Green – The Brickyard*
How Much: $10**
Where to Book: www.eventbrite.com.au/e/intro-to-mental-health-tickets-530014125517

*Fully mobility accessible venue with breakout room.
**NDIS payment accepted.

Baby has arrived

/ Sarah K Reece / 7 Comments

We have a beautiful healthy little boy, born on Friday by c-section. It’s been a very long, disruptive process of inductions and hospital visits and stays. He’s not yet been named. He’s very beautiful with a full head of dark hair. He makes all the lovely newborn snuffles and snorking sounds. He feels like velvet. Nightingale was able to do skin to skin immediately after birth in the theatre and through recovery. He’s in newborn sleep mode which means loads of naps during the day and cluster feeding and squeaking all night.

ID light brown newborn wearing a blue singlet, snuggled up on a cream blanket. He has short dark brown hair and looks content.
ID black and white portrait of a baby wrapped in the striped hospital blanket and lying on his tummy. He’s looking very serious with big dark eyes.

Nightingale sailed through day 1 post surgery then started collecting a horrible bunch of post op complications. We’ve been stuck in hospital much longer than hoped because of them. She’s been through hell the past few weeks with so many painful procedures and things not working. I’ve held her hand through most of them and we’ve worked hard to protect ourselves from the stupidity and vagaries of the health system. We’ve succeeded far better than I expected in many ways, but far less than I’d hoped. There’s a lot of bad stories and a lot of pain and trauma. Most of the staff have been fabulous, and a few really saved the day by talking us properly through options, or listening to concerns which they thought were unlikely but turned out to be accurate, or protecting our wishes when someone else tried to take over. A few have been so bad we banned them from contact again. It’s so different to Poppy’s birth and yet so familiar. Miraculous and beautiful and awful and dark. We are grateful and relieved and overjoyed and exhausted and hurting and can’t put many of the experiences into words.

Pain is an ongoing challenge, Nightingale has been suffering from pain crises where she is in 10/10 pain, sometimes for many hours and the pain relief doesn’t work. A few nights back she was unable to move or speak for 6 hours while the staff maxed out all the pain relief options without effect. She should still be in hospital but we negotiated fiercely for home. I can nurse her with all the same resources they have the (except of course, someone to take over at shift change), and the stresses of the long stay in hospital have been building each day. The awful food, the hundreds of people who come into the room day and night, the Covid limitations on visitors so we can’t have both our kids visit, the lack of proper titration of pain medication, the way the plans change at every doctor shift change, notes going missing, stretched staff taking 45 minutes to respond to a call bell, the new person not reading the notes and harassing Nightingale for needing pain relief or blaming her for not getting out of bed every day because someone forgot to chart that she has, the ones who don’t understand consent or are confused by anything that’s not 101 typical presentation and keep giving bad advice, the ones who block agency and access to even the basic resources like an ice pack, the constantly having to explain, provide context, build rapport, and ally with every new staff member, the gratitude for things that should be a given, the sheer helplessness of being stuck inside a system with so little power. The costs accrue alongside all the good care and helpful folks. So we’ve finally come home late last night with a long list of medications and things to deal with and some home visits and outpatient appointments.

Everyone has been homesick and missing each other. Our community of family and friends have been looking after Poppy and Nemo. We’ve managed two hospital visit with them both, Nemo is anxious about accidentally dropping the baby, while Poppy is nearly exploding with excitement. We feel stretched at the seams. We’re trying hard to look after all of us.

ID Sarah holding baby. Fair skinned adult with green hair cradling a baby who is wearing a black onesie covered in bright coloured stars.

He’s beautiful. It’s incredibly strange to have a baby I didn’t birth. It feels a little like cheating at times, there’s so little effort on my part to bring him here, while Nightingale’s body has been a war zone. I feel oddly guilty.

I also feel slightly out of the loop. The hospital don’t see partners. They see a mother baby dyad. I’ve been absolutely invisible for most of the process. The same rules apply to me as any other visitor. All the paperwork says Baby of Nightingale. I have to find and store my own meals. I’m often not allowed to use the bathroom in our room but required to go elsewhere. There was a moment in theatre when they needed to take him off Nightingale’s chest and weren’t sure if they should put him in the warmer. I offered to hold him skin to skin myself and they were so startled and flustered and turned me down. The doctor asked Nightingale about her mental health as part of discharge, I’d spent most of the day crying but didn’t flag. We’ve done a fabulous job of protecting the connection between Nightingale and bubs, I’m not quite there yet.

I feel fiercely protective of both of them, and deeply relieved he’s okay, but also jolted by a hundred small experiences that tell me he’s not my son, like micro aggressions that have stacked on top of each other over weeks. I can feel the difference and I can feel the trauma jangling in my bones, the way I’m frustrated with him when the staff are doing something horribly painful to Nightingale and I’m trying to hold her hand and hold him too and he’s screaming and I can’t comfort him so I can’t comfort her. I hoped it might be better than this, we got our golden hour and protected our family as best we could. But here it is. We got the perfect outcome with him. We got a difficult outcome for Nightingale and I. We’ll keep repairing the damage. We’ve got time to grow all the good things. There’s a lot of love here.

Waiting for Baby

/ Sarah K Reece / 3 Comments

Everything in our lives for the past year has been moving towards this point, like a staircase spiralling up a tower. We are in the last days now, waiting. Our kids are enjoying visits to friends and family, while we swing between home and hospital for daily checks. We’ve had a bumpy ride with hospital, some wonderful staff and some hostile and probably traumatised ones. We’ve worked hard to build relationships, normalise seeking consent, and collaborate on the approach.

Nightingale has had a bit of a rough pregnancy, very high hormone levels causing severe morning sickness and some difficulties with low blood pressure and gestational diabetes. As a result we’ve been put on the high supervision pathway, with frequent growth scans, twice weekly diabetes check-ins, and so many hospital appts that some weeks it’s felt like we live there. Every time we attend there’s a different doctor or midwife, and often different contradictory information and advice. It can be very stressful.

Now we’re approaching the due date with pre labour contractions making every day a possible birth day. It’s exciting and tiring. There’s a steady stream of enquiries from folks wondering if bubs has arrived and we somehow forgot to let people know. It’s impossible to make plans, and anytime we can we’re just catching up on sleep.

We went into hospital recently for a catheter induction which was very painful and unfortunately not effective. Nightingale has previously had a c-section so some options they might usually consider at this point are too risky. There’s no signs of distress for bubs or Nightingale so we’re just waiting at this stage. After meeting with the delightful head of the department we have collaborated on a plan to try again next week, and in the meantime go into hospital for a checkup every day. Being able to go home to proper food and good beds has been deeply appreciated and helps a lot with the fatigue. Now there’s a clear plan it’s been a much smoother process instead of each shift change exposing us to a new person’s ideas and values. We’ve denied contact from a couple of staff who’ve been aggressive and controlling, protecting our space and the precious sense of safety and trust needed to labour and bring a child home.

It’s incredibly hard making decisions and trying to weigh up different risks and approaches, often with very little quality evidence to go on. I don’t envy the doctors who have to try and do this for many people every day. Tailoring individual care on the basis of conflicting research, poor quality information, or massive cohort studies full of unmanageable variables is very challenging. Each protocol and policy has unintended consequences and theories and ideas that seem so intuitive, so obviously helpful turn out to be full of incorrect assumptions and focusing on the wrong indicators. There’s so much we don’t know and so much knowledge we lose.

We ride a roller coaster together, and our community along with us. There’s times of deep peace and connection, such hope and joy. We’re ready for them, everything is ready. There’s times of fear and sadness, afraid of loss and regret. We tumble up and down together, riding the waves and watching the stars. Come home littlest love. We’re waiting for you.

Marrying Nightingale

/ Sarah K Reece / 6 Comments

Nightingale and I married in July, on a winter night in a forest beneath a beautiful old tree. It was magic. It was messy. It was beautiful, and imperfect in many ways both trivial and significant. It was us.

ID: A forest at night. In the foreground is a cluster of wooden chairs of various designs, arranged in rows facing a huge white dead tree. Pink, blue and yellow lights are cast upon the trunk, making it glow. Bottles of fairy lights are on tree stumps on either side.

We started many months before, with rings. It was a delicious way to spend precious date time together. Nightingale wears a simple sweet sapphire ring I brought myself years ago, and she took Poppy shopping to help pick out a lovely trio of rings for us to choose between or wear together. We tried on rings together, talked with jewellers, and fell in love with parti sapphires. It took us months to pick out the stones, taking them back and forth between sunlight and lamps to see them change hue. Design and manufacture was beset with troubles and they’re still not finished, so we married with our stand in rings. We planned a lovely hand fasting and brought beautiful silk ribbons for it, which we forgot to bring into the forest with us. There was a delightful frazzled moment mid ceremony where we each started to stumble across these facts and Nightingale smuggled our rings off and gave them to our wonderful minister just in time for us to give them back to each other.

Nightingale has a wonderful friend who is a minister living overseas. We wanted them for our celebrant but they can’t legally marry someone in this country. So we found someone local who was happy to team up with them. Then Covid and vaccination rules meant some very important people couldn’t attend the wedding with our celebrant. So we split the day into a tiny legal ceremony with the local celebrant and a big ‘renewal of vows’ in the evening with our friends and family and minister friend. This meant two ceremonies to plan, and a lovely restaurant lunch between intended to thank our hard working friends and family, that instead ran terribly overtime and took up most of the prep time for the evening.

A couple of weeks before the wedding we had to change venues for the reception due to issues hiring generators and accessible toilets for use in the forest. So our simple outdoor ceremony then ran across two ceremonies and three venues!

Vases accidentally got taken to the forest instead of the hall, leaving hundreds of flowers in buckets in a back room. People who planned to help set up with us were sick on the day and I woke up to a huge asthma attack after packing all the things the day before in the cold air. The flowers for the cake were wrong and had to be completely redone by the cake decorator that morning. It was complicated to say the least and various dear friends sprang into service and filled in some huge gaps to ensure things were set up and people were comfortable, fed, and enjoyed themselves.

In the end Covid or similar illnesses knocked a number of key people out on the day, guests, members of the wedding crew, our videographer, and most crucially darling Poppy who is still sad they missed out. Once our rings are finally done we plan to do a little ceremony again together to include them.

ID Large red cap mushroom with white dots nested in pine needles on a forest floor. Trees are visible in the background.

Our lovely people carried us through. The lights on the trees in the forest were incredibly beautiful and finally all our confused guests understood what we meant by the theme of WOMADELAIDE. Stunning red and white spotted mushrooms sprang up all through the forest that day. The day was perfect weather, cool but clear, and the hall we found was so well appointed, warm and comfortable with the most lovely person staffing it. Our dessert table was a rainbow of lollies as a nod to our lovely queer crew of teen guests who worked as kitchen hands for the night and gave us some of the most beautiful wedding cards.

ID: A trestle table set with bowls and jars or lollies and treats arranged on approximately a rainbow from red to purple. Two large rainbow umbrellas are open over the table. Visible are red jaffas, pink musk sticks, yellow bananas, yellow fantails, green spearmint leaves, and purple pastilles.

Clothes were lovely and difficult and complicated. As a non binary person there’s not a lot of weddings I see myself in. Nightingale thought she wanted a black dress but hated them when she tried them on. Thought she wanted pants but found herself twirling in the beautiful white dresses feeling oddly at home. We tried on so many clothes. I held space for her to experiment and find what she really wanted. She held space for us to be confused and excited and anxious and try on femme and masc clothes and try to figure out who of us was going to be present and how to present us. In the end we both wore beautiful jackets, white shirts and black jeans to the first ceremony, she wore a red sari to lunch, and we both wore amazing dresses to the evening. She spent several months having to convince her nearest and dearest that this was her choice and not being fostered on to her by someone obnoxious or tradition. Hers was a stunning white halterneck with clean flowing lines that fit over her baby bump, and had pockets! Mine nearly didn’t arrive in time, a guest kindly brought it in their luggage from the overseas seamstress. It was a lovely ivory and honey tulle skirt with a corset top. Nightingale wore fairy lights in her amazing braided hair, and they were sewn all through the lining of my skirt.

Everytime we talked to the celebrant or minister, I cried. It hurt. There are important people in my life who wouldn’t be there. I have been married before and I promised then to hold on until death parted us and I took that promise so seriously it nearly destroyed me. I’ve failed before, profoundly, when it meant everything to me and I still don’t in my heart understand why I couldn’t keep what I loved alive. How do I offer such imperfect love to someone I love so deeply? How do I believe in promises again? I couldn’t find the right words and they had to be right. There was so much sickness and loss and grief to row our little boat through and I felt so excited and so guilty and sad. And there were people there to hold us and guide us. We stumbled through the fears and grief to find what we do believe in, and what dream is so important to us we’re willing to put life as we know it at risk for. Knowing love hurts and breaks as well as heals and grows. Being hurt and broken and holding on to each other and the shared life we’re growing.

Friends helped me gather the flowers myself when we suddenly had an indoor venue that we wanted to decorate to feel special. I got the fabulous experience of being able to pick them out and plan the table flowers, cake flowers, and bouquets. I chose a range of flowers from the most important bouquets Nightingale and I have brought for each other since we first became friends. There were black lilies and white and green and blue chrysanthemums and white and blue delphiniums and tiny cream roses and andromeda and asiatic lillies and jonquils. Her bouquet was accented with green and mine with blue. It was spectacular and lovely and delightful. The tables were also decorated with willow branches and tiny red mushrooms, potted plants, blue books, and fairy lights in gin bottles.

ID: Table decorations. A potted black violet in bloom worth a decorative red and white spotted mushroom. To the left is a gin bottle with blue fairy lights inside. To the right are booked wrapped in brown paper. In front is a chocolate cupcake in silver foil, with a swirl of teal icing and two silver chocolate bird skulls on top.

The cake was a splendid teal buttercream chocolate cake with fresh black and blue and white flowers and silver bird skull memento mori. The guests had cupcakes in silver foil. For gifts we wrapped ‘blind date’ books by some of our favourite authors, the potted plants, lolly bags for the kids, and boxed macarons. So many of the people we love either garden, read, or enjoy a sweet treat.

ID: A three tier wedding cake surrounded by cupcakes. The cakes have teal icing, silver bird skulls, and edible flowers and butterflies. The main cake has a spray of black lilies and other flowers flowing down the right hand side. Black chocolate drips from each layer.

Our backup videographer was lovely. Friends stayed late and helped us clean up. They wrapped our last gifts and decorated tables and unpacked chairs and kept an eye on my asthma and kept an eye out for the few guests who knew almost no one else. Our makeup artist soothed many difficulties and helped us dress. Two dear friends missed the ceremonies because they set up the hall and spent the evening cooking for us! An interstate friend wound up mostly driving hired furniture and lights around instead of us. We woke the next morning incredibly ill with what turned out to be influenza. It was a brutal one and none of us left bed for a week. We didn’t get a honeymoon or to spend any time with our lovely long distance visitors. We still haven’t picked up all the wedding bits from the kindly folks who took home bits and bobs with them so we didn’t have to.

ID: Hand holding a cupcake with two bird skulls.

And it was perfect. No one fought, no one cried, we created name and pronoun badges for all the guests to make life more comfortable for all the gender queer folks to wear whatever we wanted to. The venues were beautiful, our guests delightful. People restrained themselves from giving us physical gifts as we currently have no home to put them in. We announced our pregnancy to much celebration. There was hot homemade soup and a stocked bar and a tremendous amount of kindness. We wrote emails about accessibility and tried to consider sensory needs, small children, chronic illness, mobility, safety, and comfort. We tried to ensure every guest knew at least one other guest. We brought beautiful shoes we didn’t wear and ordered lovely food we didn’t eat and stayed in a home nearby with an extra bed for tired guests we didn’t use and none of that mattered.

Nightingale was so beautiful and full of life. So lovely and nervous and kind. Putting the wedding together had been lovely and stressful and incredibly time pressured with so much else going on in our lives. I was afraid that on the day there would be tensions, sadness, fights, strain. But all the fears and tears and pinch and ache of the planning and stress just eased that day. We rolled with every change and gratefully accepted so much help and enjoyed all our guests and just let go of everything we couldn’t control.

Our vows were lovely. Our choices for everything were so considered and so specific to us. Our people carried us through bad luck, poor planning, and difficult timing with such generosity and grace. We made promises and vows we believed in. We exchanged rings. We held each other at the end of the longest day and felt exhausted and grateful. She said yes. She is my wife. I am her spouse. May we always be as lucky and as loved as we were that day. It was splendid, and she was spectacular.