To the victor goes the spoils: why perpetrators are treated with sympathy

In the aftermath of public cases of violence, rape, and abuse, the conversations and reactions tend to be polarised between hatred, fascination, and sympathy. Some perpetrators such as those who’ve asexually abused young children are dehumanised and reviled. Some such as serial killers are the subject of intense curiosity and speculation. Many are instead regarded in a sympathetic light that can have brutal consequences for victims.

People are not split into single categories such as victim and perpetrator. We may wear many hats and fit many labels in different contexts and across various relationships. It’s not inappropriate to consider the history and context of perpetrators and their actions. However, how we experience sympathy has a profound impact on social justice. We have a range of bias that favour perpetrators at the expense of victims, and if we are unaware of these we are easily recruited to behave in ways that protect perpetrators and further harm victims. Understanding these bias can help explain horrifying social, political, and organisational responses to violence and abuse. We can maintain compassion and curiosity without becoming part of systemic abuses by understanding how sympathy is elicited and countering the bias.

It is critically important to understand how sympathy is formed because when we sympathise with someone we are more likely to perceive them as credible, and less likely to see them as responsible for the circumstances. As strange as it may sound, there are many factors that stack the deck strongly in favour of sympathy with perpetrators. Here are two excellent articles exploring sympathy for perpetrators in more detail:

Sympathy follows specific trends that can be researched and understood. For example, we find it easier to sympathise with someone when we know more about them, when we share characteristics in common with them, and when sympathy with them doesn’t contradict our need to believe in a just world. To put that another way, we are more likely to sympathise with people when we feel they are like us and when it doesn’t cost us anything to do so.

The just world belief refers to the underlying hope that if we do the right things and are good people, bad things won’t happen to us. It draws on ideas of social justice and fairness and yet leads us to behave in ways that violate them. It’s a key aspect of victim blaming and part of our cultural demands for ‘model victims’. Our fear of being victimised ourselves influences how we respond to the harm experienced by others. This is a good article with more details:

Many of the characteristics of model victims – such as sharing a lot of personal information, making the listener feel comfortable, having strong but not intense, appropriate emotional responses that are clearly visible to the observer while discussing the events – are specifically inhibited by trauma responses. Numbness, rage, confusion, and reduced emotional range are extremely common responses to trauma and these directly inhibit the development of sympathy in others. Judith Herman explores these ideas in more detail in her excellent book Trauma and Recovery. Memory loss is an incredibly common symptom of trauma and yet it often severely damages the credibility of a victim because our expectations of their capacity to recall and communicate the experience are completely at odds with the reality of how the brain functions in those kinds of circumstances.

The standards to which we hold victims are impossible for anyone traumatised to attain. They are also astonishingly high. Victims of rape or sexual abuse must defend their sexual history, clothing choices, and personal virtue. A less than perfect victim is accorded less sympathy. In contrast the standards perpetrators are held to to garner sympathy are astonishingly low. Flagrant, sadistic, violent, or cunningly concealed abuses may be rendered less horrifying by any small presence of a humanising factor.

It’s particularly interesting to note that the same mitigating factors when present for either the victim or perpetrator tends to favour the perpetrator. If the perpetrator was drinking, suffering from mental illness or cognitive impairment, or experiencing life stress they are seen as less culpable. If the victim was experiencing any of those things they are seen as more culpable and less innocent.

Those same circumstances that can make us feel sympathy for the perpetrator as less culpible, can also make us dismiss a victim as less socially valuable. In the same way that less outrage is raised for missing black children than white children, harmed disabled people, less attractive women, queer people, poor people, and marginalised people of all kinds are already perceived as damaged or at higher risk, and at times we are less confronted by and concerned by their abuse and less sympathetic towards them when they’re harmed.

Perpetrators ask very little of us, they want to continue the status quo, stop having the uncomfortable discussions, and keep the focus away from the victim.  Their desire to minimise, deny, downplay, forget, move on, and avoid change are all socially and politically comfortable.  Victims on the other hand need us to recognise the scope of their losses and suffering, to respond to their pain and rage, to address their vulnerability or accept the inevitability of harm to some.  The absolutely fair and reasonable needs of victims are considerably more difficult to respond to than those of perpetrators.

Strangely enough, in many circumstannces, the more clearly innocent the victim is, the more likely they are to be blamed. By using a combination of sympathy bids and DARVO, perpetrators persuade organisations and cultures to allocate sympathy in ways that betray victims. DARVO stands for Deny, Attack, and Reverse Victim and Offender, a common set of perpetrator behaviours that flips responsibility for abuse onto victims.

This betrayal trauma sets victims up to blame themselves, and makes them more likely to suffer long term mental health impacts, and be victimised again in the future. It represents an abuse of our privilege and social power to respond in this way.

So the next time you find yourself trying to process your feelings about abuse or assault, be aware that we are easily hijacked for many reasons to sympathise with the perpetrator over the victim. Shame in perpetrators predicts high levels of re-offending – I’m not advocating for hate. But participating in the betrayal of victims as a community harms the victim and makes re-offending more likely by the perpetrator. It is essential to hold perpetrators to account and maintain a deliberate focus on the losses suffered by the victim, not those suffered by the perpetrator. Justice and compassion are not served well when perpetrators are able to keep us focused on their humanity and their losses, generating sympathy and reducing responsibility while distracting us from the humanity and suffering of those they’ve harmed. Be careful where your sympathies are drawn.

Poem – my business is not who I am in the world

I read this fabulous article tonight about objectification at work, How to build a life: A profession is not a personality.

It was posted on the ever brilliant and relevant Freelance Jungle, the best mental health resource for Australian freelancers I’ve come across. It reminded me of a poem I wrote in my journal a few years ago when I was wrestling with my obsession with work. When I was sick and unemployed I struggled deeply without a public identity because that is usually our work. Struggling to figure out work left me tangled and defining my self and life in ways that disempowered and wounded me. I recall listening once to a fabulous presentation at a world hearing voices conference when one of the speakers told us he felt as defined and limited by his public identity as a psychiatrist as he used to by his public identity as a schizophrenic. He introduced himself as a person who worked as a psychiatrist. It was strange and thought provoking. We are all more than the roles we play, and it seems to be just as important for us to remember that as it is for other people to perceive it about us.

My business is not
Who I am in the world.
It is not
My identity, my value, my self respect
Not the sum of me
My place
My impact
My legacy. 

My business is a project
One project among many
A way to earn money
Make a difference
A way to be in the world.
It is not the only way
The one, true, right, way
The sum of every effort until now
Validation for all that came before
The reward for every tribulation.
It is just my business, one dream
Among many.

My business is not 
Proof that I've 'made it', or
Evidence I've settled, given up, sold out, lost faith.
It doesn't mean I've gone over to the other side
Become a success or failed a character test
It's something to be proud of but not the only thing
It's a part of me but I am not
A peice of it.
If it died
I would still be here.
My business is not
Who I am in the world.

Support Worker needed for Northern Adelaide

I am hiring to build up the team of a lady in the Northern suburbs. I can offer between 8 and 20 hours a week, happy to onboard 2 people for around 10 or with an eye to increasing up and adding other clients once they’ve settled in. Our work is relationship based so onboarding is a gradual process not a sudden diary full of clients.

Male staff are particularly suited to this client, if they are keen on gym, sports, and working out that’s ideal. There’s 2 other staff on her team already who will provide support. Due to mental health issues this client is always supported with 2 staff rostered together. Staff assist with domestic tasks such as cleaning, small scale gardening, and cooking, with transport to appointments, managing admin such as mail and appts, and providing companionship and help to access community. You’ll need to be comfortable with people with mental health challenges and have a friendly and patient disposition.

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

I’m hiring again, so please get in touch if you feel you’d be a good fit, or to ask questions. Please contact me via email or chat using FB or discord, not phone. Please be human and give me some real info I can engage with not just a resume or list of qualifications. I’m far more interested in your values than your training.

Nightingale Proposes

Quietly and secretly, Nightingale and her son crafted a beautiful proposal. In a dim room in the city, above the scrape and bell of the tram line and the river rush of traffic I found her waiting for me one evening with a table laden with gifts. She had been collecting mementos of us; sheet music from our songs, text from the books I’ve been reading her to sleep with, lyrics and poems and quotes we’ve shared. She printed them onto my favourite colours, finding the codes for teal and not aqua with the same fumbling determined uncertainty I have in her world of music and song where I think I can almost hear the distinctions she points out. These papers were folded into 5 petal origami flowers, one for each day we’ve been dating.

ID a coffee table with a white table cloth, covered in multicoloured paper flowers and candles, in front of a huge window through which there’s a view of the city lights and a gibbous moon rising.

She disguised it as a work project, folding in lunch breaks, hidden in her lap on the bathroom floor while I had a hot bath to ease pain, in the hours I was asleep or working. They are double sided with paired matched mementos, the music and art of our love.

ID close up of origami flowers, candles and gin.

Nested into this paper bouquet were fairy lights, candles, rose petals, our favourite chocolates and gin, and the set of rings she brought us. Three stacking rings as placeholders for the engagement ring yet to be designed. Three slightly different rings so we can each choose which to wear and change them as we wish. To have our plurality and non binary identity given such care and room to breathe is such a joy and relief.

In the centre of the table was a love letter tied with black ribbon. I sat and read the flowers, opened the chocolates, smelled the candles, breathing it all in while the moon slowly rose outside the window. There’s tears and joy and peace. In the letter she talked of our love and what I mean to her, and she asked me to marry her. Words can be hard, voice is harder still.

I say yes and kiss her face and hands and then write yes on paper and nest it into the flowers beside her letter. At 3am when the magic will seem strangely distant and maybe a dream, it remains there – her question and my answer. A beautiful anchor in such strange seas.

ID a person kneeling before a table of rainbow paper flowers, reading everything with great care.

I’ve spent years learning how to let go of what I cannot have, how to release my desire for control over what cannot be controlled, and how to let go of dreams that have broken my heart. Suddenly she is there, so incredibly real and beautiful, moving towards me, kisses on my mouth and a thousand arrows in my heart and my life is no longer about letting go or accepting the fates but grasping hold with fierce anguished joy. It rains in my nights again, and when there’s no rain there’s tears like rain, talking through the nights, hearts on fire. The children sleeping and stirring and singing and hurting and needing and loving and somehow embracing us both despite all the stories and norms of fractious step families. The things we expect to be hard are easy, and where there’s sorrow and loss we can name it and give it a place to be. The stakes are impossibly high and at the same time they’ve never been more within reach. We hold each other and weave together this dream of our future, unpicking and reweaving and getting tangled and easing them out again with patience and courage. She’s magnificent. Love is always a wild thing, untameable, a leap, a gamble. And yet, I feel so grounded, roots deep down and my voice unbound. She’s beautiful and wounded and fierce and devoted and I adore her. The family we make together is utterly worth the risk.

ID two hands over lapping, each with place holder rings. Mine is the white skin and all three rings stacked. Nightingale has 3 small sapphires on her placeholder ring, her hand is slender with brown skin.

When we first started dating we feared losing our friendship. Now I think of my life without her and that’s a cold wind, an empty chill. Life is painfully short, impossibly long. We wrap ourselves around each other and hold on. Some nights it rains. Some nights she sings. I’m writing again. Life is hard and bountiful. The garden is well tended and yields fruit. In the winter, we plan to get married.

Being Disabled at Work

Well, 10 years in to having my own ABN, I’m now running a small team of 9 employees and have a few fabulous subcontractors and other businesses providing support too. I’ve been thinking a lot lately about disability at work because as a person with multiple disabilities work has been a huge challenge for me, and most of my employees have some form of lived experience of disability either themselves or as a carer in their personal lives. Figuring out access needs for all of us is a constant theme in my life at the moment! I’m presently overhauling all my HR documents to make them more inclusive and accessible, it’s so time consuming but also so essential.

I’ve also done a lot of training and mentoring over the years trying to figure this process out. Sadly, most of it has been worse than useless, it’s been so uninformed that it’s done harm. I’ve had to un-learn a lot of what I was taught because it became part of what was holding me back and adding to my struggles. The micro-business for people with a disability cert 3 I did 8 years ago was destructive. Experiences with some (not all) Disability Employment Service Providers was likewise, as were various trainings offered by mentors, business support services, NEIS, and so many other systems intended to make life easier for someone like myself. They almost all floundered on two very simple diversities: poverty and disability. Without a good grasp of those two realities, so much of the material was a poor fit and in some cases seriously so.

I’ve got more confident about walking away these days and in some cases providing feedback. Here’s a de-identified email I sent to a mentoring program I was in a year or two ago:

Just putting down in email some of the things we’ve been talking about. I think XXXXX has a lot to offer me and other medium to long term unemployed folks with disabilities, but some aspects of it are also concerning, stressful, and potentially harmful. My brief rundown is:

Positives:

  • Strong focus on increasing individual capacity
  • Wide range of useful methods with a good research base
  • Positive approach to challenges’
  • Useful overview of the business development processes
  • Excellent use of human centered design tools for product and service development

Difficulties

Most of the information is generic and not disability specific, particularly for people who are neurodivergent. (people’s who’s brains/minds work differently from the norm, such as autistic people, those with ADHD, giftedness, brain injuries, mental illness, and so on)

Much of the information is presented in a decontextualised way which is highly risky for people who experience systemic discrimination and trauma (both almost ubiquitous to the disability population) By which I mean things like

  • Telling people that empathising with other people groups is easy has the potential to be not only vastly inaccurate but shaming. Many people with autism experience over or under developed empathy in very challenging ways, most people who have been long term poor find it very difficult to empathise with people with money such as potential employers, and generally they lack the intimate access necessary to such people to form it.
  • Another example: “You’re not limited in any way if you have internal motivation” which is a cruel set up for shame and humiliation when people discover that in fact systemic oppression still exists and issues of stigma still impact their lives in harmful ways.
  • We were told often that habit formation is very easy “anyone can do it, it’s just like breathing!”, whereas difficulty forming habits is a common aspect of ADHD. (for more about this see here) And breathing is an autonomic reflex, not a habit.
  • Told that “If we were more outside our comfort zone, we would have more growth and success”. This is risky advice to give to vulnerable people, and there’s a substantial body of research that shows the benefits of safety rather than risk in promoting growth.
  • Told that we all lack motivation and struggle to make ourselves do hard things.
  1. there’s little evidence for any widespread personality deficits in either the poor or disabled communities.
  2. a quick discussion with the online group revealed the usual more complex relationships with motivation with 2 group members who hyper focus, 2 who find positive feedback distressing, 2 who use negative feedback as perverse reinforcement (common for marginalised communities) and only 1 who found motivation a concern in general. This took about 3 minutes to ascertain.

Quality of the facilitation. AAA is using a ‘mug and jug’ style of education where he the expert passes on information to we the students who are in need of his expertise. BBB is using a more appropriate adult facilitation style that includes more opportunities for reflection and tailoring of the information to the students. For example, CCC in the online group was clearly reluctant to engage and feeling alienated by the focus on positivity. A short conversation with the online group revealed a distressingly high level of job rejection with attendant loss of confidence, social alienation, and personal vulnerability. Without care for this context the information is useless at best and actively harmful at worst, playing into victim blaming dynamics already culturally prevalent for the poor, disabled, and unemployed.

A great deal of the information is inherently contradictory and rather than exploring that it’s being glossed over. For example, we are being told that happiness is the key to success but that motivation is not a feeling and we shouldn’t use feelings as motivation. This is fertile ground for discussion but that’s not being given time. Efforts to discuss are being dismissed as intrusive and needless, making the space less safe for anyone to volunteer information or contradict provided wisdom.

Conclusions

Many of the underlying assumptions about the causes and cures of long term unemployment need closer examination, as does the risk of the intervention itself. The intake materials for the course were based on the readiness to change materials used in drug and alcohol rehabilitation services. They had no data points reserved to indicate that any life domain was currently progressing well. The underlying message was that all aspects of our lives were in need of major changes, and that we were indicating our ‘readiness to give up unemployment’. However the central tenants of the readiness to change model – meeting people where they are at – is not being used. So people like CCC are being put under pressure to grasp the power of positive mindset rather than being offered the validation and grief tools needed to process their history and recover from it.

So far the course has given me much useful food for thought, but I’ve also been told that I am where I am in life because I lack enough empathy, willingness to take risks, self motivation, willingness to make myself do unpleasant things and to choose growth. This is grossly inappropriate.

Recommendations

If you would like to consider your program in a more holistic manner, I suggest the use of Critical Appraisal tools by Rychetnik (see more here) who was one of the pioneers of evaluating unintended consequences of interventions such as yours. I also recommend using frameworks such as Trauma Informed Care (more info here), and social determinants of health to contextualise your information in more appropriate and less risky ways.

I’m not sharing this to shame the program in question – there’s so many out there like this and most are put together by good folks with great intentions. I’m certainly not getting it all right myself either, this is a difficult space and I’m constantly messing up and learning with myself and my staff. I’m sharing to help you think more critically about what we think we know about disabilities in the workplace, and why it’s so crucial to take the onus of access and modifications off the people with disabilities and start placing them back on the employers and services. The burden of having to navigate these things is massive and largely invisible.

Understanding diversity is incredibly important when you want to turn good intentions into actually useful outcomes. If you’re going to be working with people with disabilities, poverty, and long term unemployment then you’d better talk to a few them and do a modicum of research before you start, otherwise you run the risk of simply creating one more shiny, painful obstacle in our lives. It’s absolutely possible to support people with disabilities in the workplace and we are competent, brilliant, reliable, and highly skilled. We can do better about how we do this.

Poem – Connection

After late nights talking, I wake early and creep away from sleeping child into a bath. Reread a journal from 2018 and find this poem about Poppy.

Connection

Late spring evening
She's in the bath, giggling
The wind outside is restless
The air velvet and warm
As the time passes
Something eases like sand flowing
Through an hourglass
The noise goes quieter
And quieter still
The noise goes
Into the silence
We are still
We look at each other
Really alone and
Really looking
And we laugh. 

Introducing Nightingale

I have a lovely partner, who on this site shall be called Nightingale.

She has been singing in my nights for so long. I used to read about friends, watch movies about what friends could be for one another, trying to learn. Undone by hopeless yearning. Over the past few years, as my family fell beneath the onslaught of illness and anguish, I turned to my friends. Nightingale was one of those who responded.

First lockdown last year, I ran to the edge of my strength for Jay. I found myself voiceless and naked in my bath, trying to call hospitals for them, losing hope. One of my friends (not Nightingale) came and sat next to me on the wet floor, interpreting texts and whispered stutters to make the calls that were now beyond my capacity. It was a horrifying and precious moment, blazed in my mind forever. My own vulnerability and nakedness irrelevant beside the strength of our friendship and our shared fears and hopes for Jay. This friend moves in and out of my life on tides as friends do, sometimes a weekly visitor and companion, sometimes focused elsewhere or drowning in terrible depression. She’s very precious to me.

Poppy regressed terribly as Rose disappeared into a hospital that covid restrictions closed to children. Until then I had taken Poppy into every hell Rose was lost in, every single day I made sure that Poppy saw Rose no matter what. Suddenly not all my determination could scale the walls between them and Poppy falls apart into a frightening, angry mess. I visit another friend, not Nightingale, who holds me, feeds and bathes the child, waits on the phone with me as Poppy rages in the car in the night, savage with grief and unwilling to go home to the too empty house.

The person beneath the landslide cannot coordinate the rescue efforts. Rose slides towards death in the ICU, two friends sit with me and listen to my incoherent pain. They construct lists of needs and allies, menus of options I can choose from. They do the asking on my behalf, the reassuring my fried networks of people that what they are doing is enough, that I am not hurt if they cannot help, they comfort and soothe when I’m lost for words. On days I can’t stop crying to speak they run their lists of things that might help and I only signal yes or no. They are within reach always, on my phone, a message away however far apart we are. I am crushed by the weight of fear and grief. Someone turns up every day to my home and I scrape myself off the floor, out of bed, off the couch. I gasp for breath and do chores, make meals, push Poppy on the swings. In the background these friends orchestrate.

Sick and bedridden with pain and vomiting, friends and family arrive to take me to hospital and Poppy to bed. Friends stay with me by text on my phone as I wait an hour to be triaged and advocate on behalf of a bleeding hemophiliac gentleman and a distressed psychotic man afraid he’s been infected with AIDS. My friends are my lifeline in the bizarre world of the ED, they hold my heart and my sanity. They are Faber in Montag’s ear, the soothing drone, the context, the cautious advice.

Through these nightmares I have been profoundly blessed with a community of friends and family who have brought meals, head rubs, movie nights, mopped floors, listened to me, pushed Poppy on swings, held me as I held up a sky that daily seemed to somehow weigh more.

I tell you this so you can understand that I’m no longer starved for friends, and that among such incredible gems, these faithful and loving people, Nightingale. In such incredible company, her compassion still shone. Enduring her own painful circumstances and challenges, she showed up for me, and let me show up for her. Our lives weaving closer with each kind gesture, each shared painful secret and moment of joy. We grew closer through terrible storms, finding in each other a companion with dark humour, bitter wisdom, and stubborn determination to endure. When little was constant except the frailty of our dreams, we were constant to each other.

Poppy is so deeply loved, but she hasn’t had the carefree childhood I’d hoped for her. Given the losses and confusion for her I had resigned myself to being without a partner for a long time. She adores Rose and I and has had so much to make sense of already, I felt that there was no way I could bring someone new into her world for the next 10 or 15 years. Letting go of Rose as a partner has been a terribly long process, our brief wedding plans last year, their new partner, the last hopes of our romance early this year. There’s bitter pain as we try to birth a new type of relationship to each other, navigate so much with so little. I joined friendship apps. I grieved. I cleared out my house and organised my drawers. I accepted the need for stability and security and I poured myself into my friends, into Poppy, and my work. Old dreams came creeping back like lost cats.

Nightingale was there all along. One night when she hugged me the world shifted beneath me. A different future entirely stood before me like a door I’d never seen before. I stood for a week on a precipice between the familiar road and the new door. Continue as only friends or confess that I could fall in love with her? One path I could see and understand, the other felt like stepping off a cliff into the unknown. Why risk it all? And how could I possibly still believe in love? And yet. What else is friendship but love? I am so loved, and I love already. There’s little room for jaded cynicism in my world, I know how lucky I am despite all the broken dreams. Maybe I would share and she would not feel the same. We’d laugh and shake it off and life would continue as before, infinitely precious.

That’s not how she felt. I’d been firmly shelved as unavailable in her mind back when we first met. Now everything changed. Could fall for each other became are falling for each other. We barely slept the first week, unpacking every fear, every reason to keep the door closed, the losses and fears falling on us like sledgehammers. Just because we feel something doesn’t mean it’s a good idea. There’s so many tangles and complications. Love isn’t the same as it was at 16 or even 29. We’re both single parents with responsibility for more hearts than just our own. We both know what it is to hope and lose. And yet, some of the impossibly difficult things have somehow been so easy. Nightingale was already one of Poppy’s safe people. We already know each other well, in some strange ways nothing changes. In others, everything changes, and some of that has been terribly sad and painful, others of it tender and wonderful. We work so hard, but it seems to bear fruit. There’s sweetness in it, not just toil and tears.

Friendship to romance is new to me, I’ve never experienced the sense of security that comes with already knowing the other person, already caring for them – and being cared for by them, so deeply. We find each other’s hands and go through the door, flying and falling. It’s giddy and beautiful and scary and lovely. There’s someone to come home to at the end of the day. I read her to sleep, I sleep in her arms, she shows me sides of herself hidden from the world and lets me hear her sing. We hide from the world on a couch and listen for the rain.

Everything changes and I don’t know what the future looks like anymore. So many dreams suddenly within reach like far off stars that turned out to be fireflies. She’s breathtakingly beautiful, incredibly strong, wounded, tired, and like a tree with deep roots she holds fast in all kinds of weather. Like a nightingale she sings in the dark. Whatever happens next, I’ve been phenomenally lucky to have each of my friends, and for her to invite me into her life the way she has – that will always be a privilege and the most lovely of memories. Unlooked for, fraught, passionate, precious, dazzling. My heart is full of hope and she is my home.

Mental health in lockdown

Every lockdown I hear about folks with psycho social disabilities being abandoned by their support providers. Welcome to an NDIS that is largely informed by people with a disability background, with mental health as a last minute tack on. Yes, maintaining supports for people with high physical needs is obviously essential – people who need support to transition out of bed into their wheelchair, or assisted showering or feeding must be able to access their services. It may be less obvious, but it is just as essential to maintain support for people with high mental health needs! Lockdowns are a highly stressful event with well documented mental health impacts. Our most vulnerable people are of course going to feel this impact even more. I am deeply frustrated by the lack of recognition of how real these needs are and how serious the outcomes can be for people.

As a small provider of support teams I recognise there’s a huge logistical challenge in lockdowns. It’s tempting to ignore all but the most obvious care needs. It’s critically important to make sure mental health is part of this. Here’s a quick run of the process I’ve developed for my team:

Risk Assessments

Each client is assigned to a low, medium, or high risk category for that lockdown. These are specific to the needs of the client for each lockdown, and not a static unchanging category. Low risk clients are those who are well prepared and resourced and highly independent or with excellent in home supports. Children with parents at home who have organised all the needed resources, adults who have excellent independent living skills and only need support with transport or gardening or other non essential tasks are examples of low risk. This assessment is based on contacting each client and their primary support worker, if both agree all is well then halting all in person services for that client is likely the safest response. Continuing in person service provision for these folks will put them at far more risk than halting services. Some low or moderate risk clients will still need supports that can be provided online or over the phone, for example assistance to purchase online supplies, or help to access covid testing if needed.

High risk clients have vulnerable health or mental health needs and/or living circumstances that mean they will need in person supports during the lockdown. Examples of high needs from a mental health perspective include clients who will not eat without support, those who struggle with paranoia or persecution type delusions, and those with high sensitivity to loneliness or perceived abandonment. Just because someone has the physical capacity to feed themselves does not mean they will be able to do this under stress. For these clients a personal safety plan is created and shared with their team. A template of my plans is available here, you are welcome to use this for your own circumstances, it suggests opportunities to engage some of the key mental health impacts of lockdowns according to the current research.

Reduce risk of client to client transmission

Support workers who will be needed for in person support are assigned to one client each. Where possible it’s best practice to try and prevent one worker travelling between multiple clients. Bear in mind that some support workers will also be carers and travelling to support family or others with high care needs in their personal time. Clients with high needs will need a small dedicated team to limit risk of losing staff due to illness or hotspot exposure. Other support workers can remain in reserve to replace any face to face staff who have to isolate themselves. Support workers should attempt to minimise needless transport and perform necessary travel on behalf of vulnerable participants. It’s also very important to ensure participants are receiving updated health advice in a format they can understand – this may be a plain English print out for their fridge, or a morning phone call to check in.

If you have mental health challenges or a trauma history or are supporting someone who does here are a few key support needs and considerations I have found helpful:

Food challenges

Most people with issues around food struggle more during lockdown. There’s many ways to assist depending on what the challenges are and how well you know the person’s specific needs. If they have helpful support from a dietitian or GP they may be able to inform this process A few options might be: shop for supplies of that person’s safe foods, the things they find easiest to eat even when they are stressed. This might not be varied or nutritious but all food getting in and staying down is a positive thing when restriction is an issue. Meal replacement shakes/drinks/supplements may be an important resource. Shared meals can be helpful for those who find social support useful. Distractions in the form of movies, puzzles, conversations, and board games can assist. Company for an hour following meals can assist with preventing purging. Meal planning can support those with lower capacity to plan and manage tasks. Eating to a schedule of 3 meals 3 snacks can assist those who struggle with bingeing or restricting (it sounds counter-intuitive but regular food is a very strong preventative for bingeing). Having meals provided or portioned can assist those who struggle with that aspect. Obviously some of these approaches will be unsuitable or even harmful for some people – tailored support is essential for good outcomes.

Anxiety/Paranoia/Psychosis

Folks who struggle with these issues are likely to have increased difficulty during lockdowns. Anxiety generalises easily so people may express fears about the virus and their loved ones through other seemingly irrational fears or get locked on to concerns that compromise their safety or provision. For example some people who need personal support in showers may suddenly refuse this, or be unable to cope with showering altogether. Issues with neighbours may flare up into huge problems, minor conflicts with family or housemates may become unmanageable. Phobias can become so intense people can’t function, and if paranoia increases too much people may come to fear and reject their team, refusing medical care or food or support.

It’s important not to get too caught up in the expression of fear, but to recognise this is not intentional, and to engage the underlying needs as best as possible. Yes the person may be talking crazy sounding things about being poisoned by the neighbours, but arguing about this is likely to leave them feeling more alone and unsupported, and even afraid that you might be part of that plot. Someone who has become so phobic of birds the house has to stay completely closed up in case they see one through a window may well know on some level that this is irrational, but the brain link to their fight/flight response isn’t something they can think their way out of, and adding shame and embarrassment to the situation rarely helps. The real needs are often about control, territory, and connection. When people feel unsafe they experience and express this in a variety of ways. Any small things that can restore or preserve control, territory and connection can reduce the distress. The sad thing about experiences like psychosis is that they often impact the very things people need to be able to manage them safely, so it falls to us to be aware of this and try to work around it.

Meeting needs for control can be as simple as asking the person to help draft their own safety plan, to decide if they want to cancel the GP or change the appt to telehealth, to invite them to choose a meal plan you can help them shop for. For people with traumatic histories around psychiatric inpatient experiences or residential care, anything that helps their home still feel like a home and not like a formal care environment can help reduce triggers. Be mindful that sometimes simple things like our communication books or weekly roster shouldn’t be on display but digital because of that history. For other people having access to the communication book will help them feel more in control. It’s individual.

This links into territory too, who’s home is this and how safe does this person feel in it? Do they have retreat spots where no one is allowed to disturb them? Are there issues with housemates? Can they change things around to help them feel more in control of the environment? This might as simple as asking them where PPE like masks and sanitiser are kept, or helping them to create a quiet nook in their bedroom where they can hide out and use headphones when things are a bit overwhelming. Some more thoughts about territory here.

Connection is vital, we don’t endorse phobias or delusions as real to us but we do endorse them as very, very real experiences for our clients. We may not see what they are seeing or sensing but they absolutely do, and they have to navigate all the feelings that come with that experience. Validation is incredibly important, as is understanding that people trying to reassure someone their phobia isn’t really harmful, or delusion isn’t real, is actually in it’s own way very confronting and isolating. Read more about my experiences with psychosis here. Maintaining the same team wherever possible, ensuring the team is large enough to cope with a number of people being removed and required to isolate, and wherever possible using a co-design approach to all changes, introductions of new people, new routines, and so on can all contribute to emotional stability and reduced distress.

Self harm

Are there appropriate medical supplies in the home for the clients preferred methods of self harm (burn cream/antiseptic for burns, butterfly stitches for cuts, etc)? Is there access to a local nurse or GP who can assist with any more serious injuries? Mental health informed and non-judgmental vastly preferred! Will this person be safer if access to risky supplies is prevented, or safer if they are not searching for new unfamiliar materials to self harm with? Eg if there are parents providing supervision then reducing access can be very helpful – parents may for example lock away knives. If there is no supervision then reducing access can be risky – people searching for new tools can use items that are far more dangerous. Does this person have alternative options for managing self harm impulses? For example, a grounding kit, ink not blood, Dialectical Behavioral Therapy skills, safe people to contact? Are their support workers and housemates compassionate and informed about self harm, or stressed, confused, scared, or angry? Do they need more information and training? A place to start might be My experience of self harm. We need compassionate and regulated people in support roles, not overwhelmed, horrified, and confused folks. This also goes for our approach to ourselves when we are struggling with these issues.

Confusion

For folks with severe dissociation, dementia, psychosis, and various other challenges the higher stress and disruption of the usual routines can lead to high levels of confusion. This might mean forgetting crucial information, mixing up important lockdown guidelines, missing essential appointments, taking medications inappropriately my mistake, and other errors that can have huge implications. People who are usually able to drive might not be safe to, or those who independently manage their medications might need more scaffolding for the lockdown. Draw on resources from supporting clients with dementia such as whiteboards, alarms, reminders, checklists, and countdown clocks.

Make sure you are checking for higher needs that might be unintentionally concealed, or intentionally hidden by embarrassed clients or those afraid that higher supports might never be reduced down the track. Short periods of more intensive support can be the difference between riding out a tough time and full breakdowns with serious consequences and sometimes much more long term loss of capacity. Again, good relationships, a high sense of safety, and clear communication assist this process.

Insomnia/hypersomnia

Sleep disturbances are really common during times of stress. The latter is disruptive but the former, like food stress, needs to be regarded as a warning sign. For many people it will be unpleasant but reasonably benign, and resolve itself. For some it will become a major problem that can endure over many years – particularly for those with trauma issues that cause hypervigilence. A period of severe sleep deprivation can have a catastrophic impact on people’s cognition, behaviour, and health. People may be unsafe to drive, make judgement errors, experience various forms of dissociation, have disrupted emotional regulation, and have loss of physical coordination similar to being drunk. This can result in a higher rate of home accidents and injuries, poor caregiving and child supervision, self harm and abusive behaviour. Sleep deprivation is a common precursor to episodes of mania, depression, and psychosis for those vulnerable.

When sleep issues are being triggered by a lack of sense of safety, I’ve found it more successful to address that as a priority over ‘sleep hygiene’ responses. This might mean supporting someone to change their bedroom around, increase mess in their home!, or sleep on the couch, to read books over the phone to help someone’s hypervigilent nervous system to calm down, or to help them build a nest in the cupboard to cocoon in.

Depression

For those with severe depression, functioning can be profoundly impacted. Scaffolding can make a major impact for someone in a bad episode who can’t get themselves out of bed, into the shower, or attending to admin and self care needs. Phone calls, prompts, help with routines, alarm reminders, friendly check ins, and visits to help coax folks back into routines and help reduce the spiral of shame, isolation, and overwhelm is really helpful. Normalising the response and reducing the impacts of the initial loss of function can prevent the development of a viscious cycle of neglected tasks causing further stress that increases the depression. There’s many approaches and treatments for depression which is far beyond the scope of this article, but a couple of things to keep in mind are: depression is a normal response to highly stressful life circumstances, depression becomes self reinforcing when it destroys our sense of self worth and connection to our community, and depression can respond well to opportunities to explore and grieve losses, choosing to focus on our values and what gives our lives meaning, and support that helps us still see ourselves as useful, valued, and capable.

Addictions

Folks with addictions are at high risk during lockdowns. It can be counter-intuitive but there’s very real research behind odd sounding decisions such as keeping bottle shops open during lockdowns. Withdrawal without support can be dangerous or for some folks even fatal. Withdrawal can also increase other risks such as domestic violence. So as strange as it may sound, this is actually about risk management and harm minimisation. Do not use a lockdown as an excuse to try to make a person give up or cut down on their addictions.

Safety at Home

Not everyone is safe in their home. Both the environment and the people can present huge risks and lockdown can be a pressure cooker that exacerbates those. It’s crucial not to make assumptions about the home. It’s been a long standing issue that there are limited or sometimes no homelessness support services for people with disabilities, based on a naive assumption that people with disabilities are always well cared for. The reality is that people with some forms of disabilities are simply more likely to be abused in situations and homes they can’t leave. For other forms such as mental illness we’re more likely than non disabled folks to wind up homeless or in prison. In all instances we’re at higher risk of being harmed. We are also sometimes the folks who harm others.

One of the biggest privileges of being a carer or disability support worker (carers are unpaid people in our personal lives, support workers are staff paid to be there) is our high level of access to people’s lives. Where a psychologist has to make sense of a person’s circumstances in an hour a fortnight, filtered through that person’s perspectives, or a GP has to understand at times very complex interplays in health outcomes for patients in 10 minutes a month, we have vastly more access. When I am working with someone in their home 10 hours a week for 6 months, I have a depth of knowledge about them and their circumstances. All that knowledge can be utilised to create highly individualised responses to challenges such as lockdowns. This is where the NDIS approach excels. Where it tends to fall down is the lack of utilising that knowledge beyond one carer or worker. Without a team who make time to pair up the front line worker knowledge with management bigger picture systems/public health/service design knowledge we get a disconnect. Management make calls that make sense in a big picture but can so utterly fail to fit an individual client it can do harm. And excellent front line staff can get caught between their personal knowledge and the guidelines of their work, or left to fend for themselves without the team support needed to get good sustainable outcomes in complex and intense situations.

One of the principles behind all these approaches is called trauma informed care and they apply both to those of us with trauma histories and those without. They are also universal in that they are just as important to keep in mind for staff, families, carers, and the clients. Sleep deprived staff can’t be their best, and some staff are in highly vulnerable and challenging circumstances with uncertain work hours, high responsibilities at home, and loss of income during lockdowns. Excellent care of people with disabilities doesn’t happen in contexts of burnt out carers and exploited staff. Understanding the risks of this kind of work, which are largely relational/emotional and rarely well addressed by OHS&W myopic focus on physical health risks, can help us to identify and address the things that cause common issues for excellent staff such as struggling to switch off after work when they are worried about a client, feeling unheard and unsupported when they have concerns, working outside of paid hours and outside of policy guidelines alone to meet the genuine needs of clients they are worried about, and being abused by clients who have control over their work hours or firing them. Promoting resilience is about understanding these contexts and being able to tailor services to support appropriate self care for clients and staff. A few thoughts about that in Self care and a myth of crisis mode, and crisis mode and being under pressure.

Hope there’s some helpful food for thought here for you or the folks you care for. Lockdowns don’t impact us all equally, they have a far greater impact on some of our most vulnerable people, and those of us with mental health issues are commonly being overlooked in rushed and inadequate risk assessments. This is a horrible reflection of poor planning and lack of familiarity with mental health and it causes needless distress and risks to many people. If you are in that situation I hope you feel able to advocate for yourself or your client or loved one, and please do reach out beyond your service providers if they have shut down services and you are in need. There are online groups on social media such as facebook where people find independent support workers, and a host of online platforms such as Mable. If you are in any kind of online support group associated with your disability many of those people will have a lot of experience and service provider recommendations. Sometimes you just need a small rejig of your current services to include a good lockdown plan and a team leader who can coordinate staff for you, or a little bit of training around trauma informed care or whatever your specific needs are. Mental illness shouldn’t be the tack on to the end of the disability approach, the impacts are just as real and the needs are just as valid.

Be safe and best wishes.

Losing Rose

Rose is in a terrible place, rarely far from death. They’ve been hospitalised many times since their near death experience in December. There was such a sense of celebration when they came out of hospital and it was so misplaced. Physical and mental health have cycled through chronic crises. It’s brutal.

Rose and I are no longer a couple.

They didn’t come home to me. Nearly dying blew wide every crack in our relationship. Every effort we both made to find a bridge between us was swamped. They proposed and ran from me. All the demons woke up. The only glimpses of peace to be found were when I took myself out of the picture and left Rose and Poppy together on a beautiful autumn day. I hoped patience would heal us but the longer I held on, the further down Rose fell.

So I let go and life took us to some un dreamed of place where the foundations broke beyond repair and for months I woke to the nightmare that they’re gone. The new normal.

Rose found love with someone else, found peace and a sense of safety that couldn’t be found with me anymore. I am so happy for them. I so want them to be okay, to feel safe, to feel loved. I am so confused and heartbroken. They are so confused and heartbroken. Nothing makes sense. We try to make time to talk but every day is torn apart by medical appointments, new infections, new allergies, medication changes, intense rehab, the fallout of trauma. No conversation is finished, few are even started. I think of the weeks spent rubbing their hands and feet and wonder if in some strange way I smell like the hospital, like death and terror and paralysis, drowning slowly in the shrill beeping hell of ICU. There’s no words for this. Their mind is fractured and ravaged. I’m replaced. I hate them. I love them. I accept what I cannot change.

I cry every day for months. Everyone wants someone to blame. I find myself defending everyone. Poppy gets a cold that lasts weeks and Rose is forbidden by doctors to be near her because they are so vulnerable now to respiratory illness. The distance drives them insane, tears their heart apart. After 4 weeks of staying apart, Rose is hospitalised with pneumonia anyway, then has anaphylaxis to one of the antibiotics. No one’s body, it turns out, can be on these massive doses for this long without becoming sensitized. Rose’s heart and mind are stripped so raw the lightest touch burns, triggers pile up and overlap, flashbacks descend like lightning storms and the nightmares rise like black floodwaters full of dead things. They are tormented by the fear it would have been better if they’d died, and it’s a mind virus resistant to nebulous hopes of a different from planned but still bright future.

My friends and family hold onto me and I hold onto Poppy. I flip my life around as a single parent. Gradually my capacity returns; I can wash dishes, cook meals, be present, plan adventures and crafts, go hours without falling apart. Plug the holes in the boat, make new plans, test new adventures.

Hate the circumstances and don’t hang blame where there isn’t culpability.

Fury at the situation eases my self hate. I can breathe again. It’s not fair and it’s not my fault. Sometimes life is just hard.

Let go of everything I can’t have. My lover, my beloved growing old alongside me. The family, waking in bed together in the mornings, holding each other tight after each fright and each good news. Let it go. Face what’s in front of me. Rose fighting for their life and not knowing what it will even look like anymore. Poppy needing a childhood that’s safe and adventurous and connected. Hold onto all our values and ideals. I can’t be half Poppy’s world anymore. I can’t work in the background knowing Rose is there with her, filling up that wonderful tank that needs connection and attention and delight and fun. I can’t be half a parent. Step up. Show up, count my blessings, hold tight onto everything good and beautiful and precious. Fight like hell for it. I nearly missed out on this. Let go and hold on.

Rose swims and drowns. I am no longer the carer in the middle of their story. I watch from the sidelines, try to throw life savers. Grieve. Train my mind to stop going over every conversation, looking for the place it went wrong or what I could have done differently. Stay focused. If I drown too, so does Poppy. You can have an existential crisis or you can have a life. Choose wisely. Hold tight.

I don’t know what happens next. I’ve found I don’t really get used to the scares. I want to be home and nearby when things are bad even when I’m not welcome to visit. Old habits. When things get very black for Rose I struggle to sleep, to think clearly, to be grounded. A fog descends that makes daily life so hard to manage. The terror fades into the background but it never goes away. In some ways I’m still waiting for them to come back from a war. I have to keep finding my way into the new world, creating it every day. Building on new habits, creating the security, the consistency, the patterns and connections and community that buffer us from these storms.

We are all losing who Rose was, and they don’t have words for this. No one can come through these experiences unchanged, and right now change is their only constant. They are in flux. They are in torment. They are in love, in pain, in the middle of it all, bound up with death and life and hope and dreams and grief and loss. They are profoundly lost and struggling towards a new future they can’t envision. We may yet bury Rose this year, or Rose may emerge in some new form, to a new life. None of us yet know the ending of this story. Whatever the ending, I must live with it, and Poppy must live with it.

There’s grief and shock and sorrow. Rage, despair, pain.

And there’s acceptance. Grace. Love. We accept the things we cannot change. We let go of what we cannot have. We hold onto what’s precious and in front of us. Over, and over again. We face life with as much love, courage, compassion, and humour as possible. Let go. Hold on.

Waking

Sitting in the dark of the cinema with Rose, alone but for one other person who sits quietly in shadow at the back, I enter into a grey world of stone and water and clouded sky. She walks a world that’s full of discomfort, chilled hands, awkward silence. I slip into her hands and feel the cold, the smooth wet stones by the water, the cold breath of the sea crashing.

It’s a world of closed mouths and watching eyes, the camera looks for us, touching horse hoof and curtain lace, tea cups, boiled egg, the texture of a life too poor to be buffered from sensation.

I walk out of my mind, my grey numb ash blown mind where the nightmares of death have taken hold and strangle laughter. Crab like, sideways, shuffle into someone else’s story, her eyes, her hands, her stubborn lonely loss. Her certainty.

I feel something

Other than dread, despair, terror, frozen.

Walking out again I try to hold onto it, the texture of life. Rose buys me flowers, they full the car with a scent of green freshness. I do budgets and paperwork and fall back into the well. I come out again to the flowers and inhale. Stand in the back yard naked and smell the tree and the sky.

We eat late, by a lamp, spiced meats and bread.

It’s not real, what’s killing me. It tells me it’s real, but it’s not. I’m still in ICU, holding Rose’s grey hand. I’m still waiting for the next blow to fall, too terrified to breathe. Flinching away from the unbearable. Sobbing rivers that can’t clean the wound in my heart or put my sense of security back together again.

I hate myself. I hate my life. Both loop endlessly. Between the nightmares where everyone I love dies. Between the mornings I can’t stop crying or get out of bed for hours. Choking down frustration and sadness and grief. Everything is meaningless. Everything means too much to bear.

I escape into company, into story, into sleep, and when I can I creep out of the ash into the very close texture of life and wake a little from the dream that’s killing me. Feel something else. Turn and find the ones I love still here, waiting for me.

Rose is Home

Rose has made it out of the hospital! They are getting daily visits from nurses and doctors and have so many appointments back at the hospital next week we could just camp out in the carpark, but they are home. We are out of life and death and into recovery and adapting. There have been many tears. They are in severe pain. When it gets too bad their blood pressure goes up and their oxygen levels drop. They have a complex medication schedule with many conflicts that need close monitoring. The medications that are healing the lungs are risky for worsening the mrsa in the knee. The psych meds are risky with the antibiotics. They need crutches to walk, which the physio has suggested will be needed for the next two years. There’s a lot to adjust to.

We woke up yesterday morning before Poppy and held onto each other through a deep cry. That was really scary, and we have a lot of work ahead of us. Rose’s allergic reaction is so rare it has never been recorded in someone who is not over 65 and male. It will be written up so that other doctors are aware of that possibility, given how often it is fatal.

Shock and fatigue, dragging Poppy around to appointments and chemists and trying to gather everything we need to care for Rose and restore as much independence as possible. Depression punctuated with panic. Insomnia, irritation, grief. Vulnerability.

And every day, these precious moments we thought might not happen again. Poppy playing games with Rose and giggling madly. Shared dinner. Cuddles. I went and brought a bunch of craft things so we can sit together in the evenings. Rose has Lego kits, I’ve started a diamond painting with Poppy, and she has stickers and foil and a book of bugs. Mindless, mindful, soothing.

It’s really hard. We’re really lucky. Friends and family are helping keep us afloat with safe friendly company and connection. NDIS support will help take on more tasks that are too much for me, such as the driving to so many appointments. We snatch moments of hard won normality like lunch with friends, or a board game night. Breathe it in and find the tenderness and patience we need for each other, for recovery, for our new normal.

Letting people help

Recovery is vastly different for me to the way it is for Rose. I remember things they don’t, there’s experiences I know only the story of that they carry the memory of in their body, where they are struggling for a sense of agency I’ve been drowning under the responsibilities of home, work, parenting, and caring. At the point where it looked like Rose was going to die, I stepped back from work and our community rallied around me. Offers of support came in and I withdrew into tongue tied silence. As the communication gulf widened, I started writing here again.

I don’t understand autism or adhd. I’m still undoing all the cultural litter of misconceptions and outdated ideas about it, trying to get a clearer handle on what they are, and what they are for me. Somewhere this year they went from an exciting revelation to a horrifying reassessment of my identity, capacity, and place in the world. They call into question so many things I thought I knew about myself. And they provide another explanation for the confusing mix of things I find easy and things I find impossible.

People send me messages asking simple questions and offering supports. I sit looking at them with a head full of white noise and a stone when my tongue used to be. I recall parts of my diagnostic report that discuss communication challenges, difficulties with scheduling and making decisions. I keep trying to move my life away from these skills I lack being so fundamental and essential to my day to day existence. Crisis brings them all back to the center.

The blog is reassessed through this new lens, as a workaround for my strange communication style. Eloquence and honesty here substiting my incapacity to find the right amount and timing for honest sharing in person. People keep asking me how I am, I flounder and test out different levels of openness or bypassing the question altogether, come and answer it here instead. I’m good at communicating. I’m terrible at communicating. [“Everything anyone has ever thought is true.” Do Androids Dream of Electric Sheep, Philip K Dick]

People offer help, ask what we need. I can’t answer. I am numb. I don’t know. When I do know, the effort to message person after person looking for someone who can help, and being reassuring to all the people who can’t and feel bad is exhausting. My own feelings are exhausting. A friend tells me all their free and busy times for the next week, but I don’t know what day it is now, and I can’t track any of it. People try to plan days ahead but the situation is so unstable nothing lasts and I’m constantly weaving and unweaving plans. Another tells me the reasons they are booked up and can’t help and to me in that moment, fearing that day Rose is dying, they seem trivial and I’m incandescent with rage, holding my mouth shut against exploding my safe places and destroying my precious relationships. Unspoken, the anger numbs me further, creates distance, but right now I lack the capacity to own my feelings without venting them. Poppy needs me to not be scary, not scary sad, not scary angry, not a seething mass of skinless triggered distress, so I freeze. I sit very still. I talk in a soft and slow voice. I layer thick frost over self. Then I try to thaw slowly in safe places.

I ask a friend for help coordinating. She steps in and plays the role I’m so familiar with: the building of safety and persistent enquiry until she understands the shape of my needs. I’m clearer about what I don’t want, what’s helpful is the negative space left when we eliminate all the things that evoke visceral distress. The offers of help are rerouted out of my inbox into hers, she corrals, explains, thanks, apologises, tends the relationships with the sensitivity my terror requires and my exhaustion precludes. We add another friend to reduce the workload. They message in regularly with ridiculous caveats: would this be helpful? Don’t answer if it’s stressful right now. When you feel up to it would you mind letting me know if this plan sounds good? I hate needing this level of kid glove handling, but it works. Slowly we build the plans and reply.

People offering food I can’t eat are redirected towards buying things I can. Poppy and I are doing samefood and struggling to keep regular meals. I can’t eat, or I eat and feel sick, or I throw up. Unfamiliar food is overwhelming. The guilt of not being able to eat gifts is overwhelming. Familiar things are safer. I’m embarrassed, but at least I know now what this is. I have words for it, even if they’re terms like samefood no one outside the autism community understands.

Offers of caring for Poppy are rebuffed gently, because we now know she will regress if left with people she doesn’t know very well. 2020 has been a training ground for what helps Poppy cope when Rose is unavailable. After the hell of my earlier mistakes, I’m glad to have a clear understanding of what she needs and to be able to stick to what I know works. Friends visit to take her out then change plans and sit at the table for 3 hours playing play dough because being away from me is too much for her some days.

I accept the help and tolerate the fear of judgement, the sense of unworthiness, the survivor guilt, things being done differently to how I do them. Someone comes to help with housework, so the day before I clean the toilet, bathroom sink, and fold 7 loads of washing instead of napping like I actually needed. It’s stunningly difficult and deeply exasperating. Despite my chronic agitation, it works. My depression lessens. There’s things to eat. Poppy is still thriving. Community folds around us, and we find workarounds for the warm boundaries and communication needed to translate the good intentions into helpful action, far beyond my capacity to do so. It takes work to transmute goodwill and effort into such elegant outcomes.

I’m reminded how essential feeling safe is to accepting help, something I know intimately in caring and in my disability support work, but struggle to find for myself. Many hands hold the pain and it becomes bearable. Many hands hold the tasks and my own inadequacy eases, the connections are strong while my capacity is broken and starting to heal. This is the heart of the work I’ve been doing, and having such an intense experience of needing support myself is both humbling and helpful. When I’m trying to create resources for someone who is freezing, unable to articulate their needs, afraid, guilty, lost: we start with safety and connection. We build everything from relationship. I couldn’t do it if I hadn’t experienced it.

Thankyou.

Recovery

Rose continues to improve, much more gradually than expected with fun mini breathing and pain crises that trigger a flurry of reassessments and new tests and visits from ICU. Back on the ward and into the chaos of constant plan changes; one morning they are suddenly told they are fasting again for the next knee surgery, then taken off fasting and told they don’t need one, rinse, wash, repeat. The surgery is simultaneously urgent, not urgent, and unnecessary. The rollercoaster of emotions runs the gamut from terror to profound relief, frustration, exhaustion, rage. New tests find no new horror, just very injured lungs taking a slow path to recovery.

Doctors loom in the doorway telling us nothing is wrong, something new is wrong, the lungs are permanently damaged, the lungs are healing well. Veins collapse, tests intrude, a machine positioned behind the right ear screams persistently. A stranger comes into the room looking for green containers. A disgruntled nurse dismisses breathing stress as panic, until someone more senior applies the machines that show it’s not. But the most devaluing ideas have the greatest hold so for hours afterwards, Rose insists it’s only panic and won’t apply oxygen. They’re told to never get pneumonia, as if getting pneumonia is a poor personal life choice or a moral capacity they have control over. The future is rosy. The future is bleak and full of chronic illness. The future is unknown. The doctor that was coming can’t be found. They are always around the corner but never quite here. You’re not allowed off the ward, off the bed. You must get up, must exercise the knee, mustn’t let more deconditioning occur. Panting, breathless, sleepless. There were donuts in the cafeteria, but no one else can find them. Life is freefall in limbo. Morphine eases the pain so sweetly it brings it’s own terror of addiction, something within fights the peace.

Stop crying, says a technician entirely without feeling, I can’t get clear images when you’re crying. Sobbing is no longer considered withdrawal of consent. I’m sorry today is hard, is there anything else we can do for you? asks the soliticous nurse standing carefully two feet away from the trauma zone of a body that is no longer covered by the dignity norms of regular life outside of a hospital. The only nurse on the ward to use Rose’s real name and pronouns.

The shampoo smells like hospital. The hand wash smells like blood. The moisturiser smells like pain. The deodorant smells like unwashed hair. The food smells like dying. The massage oils smell like shitting the bed.

The hours folds into days, tesselate into years. Life continues out of reach beyond the boundaries of the hospital walls, weather is a private joke shared among the guests. The mind becomes primal, some collapse into despair, others like Rose spin into caged animals desperate to fight or flee. Friends and loved ones reach out hands to soothe, but where we see safety Rose sees the covid patient parked next to them in the overcrowded corridor, the stressed and frightened nurse, the medication drip poisoning them.

We have all walked into a dark place, but not the same place. We don’t share the same views or yearn for the same paths. For me, hospital is becoming a normal part of life, we weave it in as best we can. Picnics, lego, Poppy, card games. We come and go and learn the paths and flows and what days the parking is easiest and which wards are most peaceful and start to know the staff by name, share updates in line at the cafe. It’s horrifying but banal compared with the morgue.

For Rose the hospital is punishment for failing health, they must earn their way out through a gauntlet of requirements: less oxygen, better bloods, less pain relief. They rush the process and trip. Life goes on without them. Someone feeds the cats. They bleed out of patience and gratitude. There’s no place to take terror or rage. Peace is unstitched by confusion, the stuffing comes out, floats free, dissolves. Within the quicksand of unknown outcomes, unstable condition, multiple teams, and constantly changing plans, they cannot help but struggle, try to find the surface where they have some kind of power and plans can be made. So here we are.

Rose is Recovering

Not bacterial pneumonia after all, a rare and severe allergic reaction that filled their lungs with pus and nearly killed them. They are still in ICU but their lungs are getting stronger every day. The darkness of losing them starts to ease back to a terrifying memory. Doctors argue about the best timing for the next surgery. We talk cautiously about a holiday. We pencil in the tomorrow’s plans and roll with the changes. Startle at every new symptom. Look at our tired family and friends through eyes full of gratitude.

Poppy has been buffered from a lot of the intensity of the last week, but she’s still aware of changes and loss. She had a meltdown yesterday and I shut myself down so I didn’t meltdown with her and could be patient and firm. Then found myself slipping into the horrific depression that’s been biting at me and my heart broke.

A few days ago my whole future, Poppy’s life, and all the memories of me and knowledge of me that only Rose has nearly fell into the dark and I’d have given anything to just have them survive. How the indescribable relief of their life can exist alongside such bleak emptiness I can’t fathom. It’s not the screaming blackness of grief, it’s a greylands of disconnection. It felt like something else fell out of my world instead. Poppy left trying to connect with an empty parent. Me trying to find a sense of self and hope in my own emptiness. Undo that shutdown and coax feeling back. Talk soothingly to myself. Try to make sense of the triggers. Sit near people I love and find a sense of connection. Pieces of myself like tiny lights in the dark, winking on and off in tiny constellations. Everything fragmented.

I want nothing more in the world than to bring Rose home and share a life, yet living that life is so confusing. I can sit in the hospital and read and rub feet, I am familiar with that role. Here in exactly the life I want so much for them. I have to work hard to anchor myself to the moment and not get lost. These are good people around me. A morning pushing Poppy on the swings is something to treasure. There’s a lightness of heart I don’t have, numbness layered over terror and rage. I feel unseen and I don’t know how to make myself visible or if that’s even a good idea. I feel heartbroken by life. I just want my people alive, I’ll deal either else we have to. This is a truth.

I want a good life for us, and I’m not sure what that is, or how to do it. Also a truth. I’ve worked so hard to get here, with a home, family and work, with a loving community, and yet. I’m so exhausted and so lost from myself. How can it be so hard to live the life I’m so desperate to protect? Is that autism or just exhaustion? How can I feel like this when the news is actually, incredibly, unfathomably good? I want to go back to yesterday when I was lit with energy, indescribable relief.

I eased myself back into existence, soothing the disconnection. Shutting down my feelings to parent has to be a temporary thing, but I seem to get stuck there. I keep reaching out. I find moments to cry.

I just want Rose home and to hold on and be held onto. Nothing makes sense in my head. I can’t do this on my own.

Rose is in ICU

Rose and I had been talking lately about me starting writing again. We talked about how their nickname Rose didn’t feel right since they came out as non binary and starting using they/ them pronouns earlier this year. We talked about my sense of unfinished business since Jay, and what I would need to do to feel like I could draw a line in the sand and start again. We talked about how I’m running a business now and sharing deeply personal things could have unintended effects on staff, clients and colleagues. And we discussed my love of writing and my sadness at losing the blog and feeling cut off from it.

This was not how I planned to start sharing again. I don’t have a new nickname for Rose. I don’t have resolution or answers. But I’m being asked how I am every day and I don’t have words for that I can say without screaming.

Dearest Rose is sedated and ventilated in ICU, battling MRSA ‘golden staf’ that has chronically infected their knee following a routine surgery, and since spread to their lungs in a virulent pneumonia. Four days ago they merely had a bad knee and a slight cough. It has moved extremely quickly and taken over both lungs.

I’m exhausted and distraught. I want to cry, scream, vomit, and violently attack something. I visit every day and help wash them, rub their hands and feet, read to them. Then I go out to my car and cry hysterically. Then I come home to Poppy and try to be her connected and safe person. My community are tired, 2020 has been unkind to many of us, but they are also rallying. Poppy has a small crew of people she feels safe with this time, which is buffering her. She tells me she misses Mama’s squeezy hugs and asks me when she herself will die. I feel so depleted. I was struggling with exhaustion and depression following all the other surgeries and stress this year already. It feels like my reserves are exhausted.

There’s so much noise around me. I’m still writing to Rose so they can catch up on messages when they wake. I’m so scared and so sad. Everyone wants to help and I can hardly speak. Rose’s hands and feet are chilled cold. Poppy paints herself and runs whooping with her friends under the peppercorn tree. So many people care. I go back to bed to nap. Don’t let this be my new normal, please. I have to find ways to keep breathing even when I can’t be near them. Guilt, fear, regret engulf me. Before they went under I told them it’s okay to be scared, but I want you to focus on the love. You are so loved. I’m trying to do the same. I’m so scared. There’s so much love here.

I’m hiring

Applications now closed for this round, thankyou.

Central to Northern Adelaide Disability Support Worker wanted

I’m looking for a new person to add to my team. This is a small family business: we’re tight knit, deliberately informal, non clinical, anti-corporate, and work in pairs or teams. This is a nightmare for some people and a breath of fresh air for others, so think about it.

I have some staff taking time off over Christmas and need one or two people to fill in a total of around 18 hours a week for a month or so, and hopefully continue if it’s working out well.

You need to be diversity friendly: that means comfortable with folks who are queer, neurodiverse, have brain injuries, have unusual beliefs or experiences such as hearing voices or mental illness, and trauma histories. I’m looking for folks with great skills at building rapport, who are ethical and passionate and care about the people we work with. Great communication skills are key. A sense of humor is a big plus. 🙂

Personal experience is highly valued. If you have cared for someone or have your own experiences of diversity or disability this will be highly regarded. Happy to work with your disability employment provider or make appropriate provisions if needed. Supervision and training are ongoing parts of this role. Our philosophy is that we support you so you can give your best support to those we work with.

The role is broad, usually in people’s homes or out in the community. We love ‘jack of all trade’ types. It involves domestic duties such as housework, admin, cooking meals. We support people to attend appointments, get back into hobbies, connect to new communities, navigate their relationships, find or stay in jobs and so on. Everyone on the team has their own particular strengths and skills and we are looking forward to learning about yours.

The real role is about HOW we do these things. Some people we work with have spent years hiding their mental health issues and need people who can help them out in ways that protect their dignity and respect that sometimes maybe they most need a cuppa and chat, even if we were booked in to clean that day. Others have severe paranoia and we might need to build trust over months before they feel okay to let us in their home to help. Flexibility is crucial.

You’ll need:
*a full license and access to a car
*a DECD working with people with a disability clearance
*Covid training (free, online)
*first aid training
(We can help you sort out the training if need be.)

You’re welcome to ask questions and show your great communication and rapport building skills 😉 please apply here or contact me on sarah@di.org.au 0401099174.

For those who have their resume online or via linked in or similar platform, feel welcome to throw me a link.

I feel your hearts

Driving home through the pang of loneliness, child asleep behind me and my old ideas like broken eggshells in the gutter, sharp as discarded moons

It has always been easier to find in the night, the cold beach at the edge of the world.

I feel your hearts as living clockwork, shooting stars, hopping mice dashing through freezing sand in a cold, dark bright night. In your face I find my own, we reflect each other. Your hands are full of my tears.

Somehow we hold the keys to each other’s locks. I find a little freedom for you, gasp a breath of clear air for myself. I live only in your humanity. I run my fingers through her hair, call to hear his voice from miles away, hold their daughter’s hand.

Here, alone under alien skies, look for something to bring back for us both. Grass climbs high through the garden, the wind blows through the laundry on the line. I thought once I needed to find greatness to change the world. It’s been a painful cancer to exorcise. In dreams she kisses my mouth and her lips are a black ocean, all the shipwrecks dreaming in her breast. Shedding my skin like a snake, somehow the music is still the same as it ever was.

The tides draw me far from the waking world. I see your forms in every shadowed tree, stars strung in your hair. I can’t name the song but it moves me. Blood in my mouth, spitting teeth into my palm. Fair exchange. It’s a long road but worth the walk.

Arts Inspiration and Exchange

For SA locals, you’re welcome to join me and some fellow arty folks to another Arts Inspiration and Exchange morning at 19onGreen, coming up this Saturday. If you need a little inspiration, an excuse to make time for your creativity, have a work in progress that needs some love, or just want some friendly company you’d be so welcome to join us. I have some basic supplies if you need but happy to offer advice in getting your own kit set up too. 

Tickets are only $10, you can buy them here or bring cash (correct change please!) on the day – email me to hold a spot for you. sarah@di.org.au

We had a very diverse group last time, with projects in acrylic, ink, watercolour, journaling and more. Some folks enjoyed trying new brushes, particularly my angled brush which is lovely to use. If you’d like to learn more about using an angled brush I think you’ll enjoy this video demonstration of using an angled brush to create watercolour flowers:

Introducing using an angled brush for watercolour

Angled brushes are available locally and online, I find the Princeton brand excellent without being too expensive, others like Neef. Remember to look at the type of brush and what it is intended for use with, working with water based mediums means you want very soft brushes. 

At the other end of the paint spectrum, some folks were working with very thick paint and impasto techniques. For this you want stiff brushes such as hogs hair, or even palette knives to move the paint around. Here’s an adorable little video about the meaning and history of impasto in painting – it’s usually done with acrylic or oil paints. One famous artist who loved to use the technique was Vincent Van Gogh who worked using very thick layers of paint so at times the canvas surface seems almost sculpted! 

Some folks were working on projects where they were learning how to do a graduated or variegated wash so that for example a flower petal might be pale at the tip and darker at the base. If you are still learning this, there’s many wonderful tutorials online such as this one:

Wishing you the right spaces and people to help you make time for your creativity.

Join our IDAHOBIT webinar

Sunday May 17 is the International Day Against Homophobia, Biphobia, Intersexphobia and Transphobia. The fabulous folks at the South Australian Rainbow Advocacy Alliance Inc and the SA Dept of Human Services are hosting a FREE webinar online and I’ll be on the panel along with Neda Madhoc and Zac Cannell discussing the theme for 2020 – Breaking the Silence.

Sunday May 17
3-4pm ACST
FREE
Tickets here
Everyone, including allies, is welcome

Image may contain: 3 people
Image description: Poster advertising IDAHOBIT 2020 Online Community Webinar. It has a bright rainbow background with silhouettes of people dancing/celebrating. A large box frames photos of the three panelists, and a big heading asks “How do we break the silence for diverse parts of the LGBTIQ+ community?”

Auslan interpreters will be present throughout the event. You can find it on Facebook here. Or jump straight to the free tickets on eventbrite. Hope to see you there, folks.

Free Online Art Inspiration and Exchange Class

Hullo folks, 19onGreen and I are starting a new arts group tomorrow! The first class is free and online, you can link in on Facebook here. Or get in touch with me for the zoom link to join in.

It will be low pressure and fun. Set up some art supplies to play with or a work in progress. You don’t have to share anything you don’t want to, but you’re welcome to ask questions, get feedback, and hang out with some friendly arty folks.

These sessions are diversity friendly, if you have any questions or concerns reach out to me.

The next sessions will have a small cost and be run in person at 19onGreen in Brompton.

The world as it is

Talking with people who speak my language. Shared experiences, peers. The night full of rain like stars falling. Meeting again after long absence the clients I’ve not been able to see since covid hit. Taking a break in the middle of my day to walk around the block with Poppy. We collected pretty leaves. She rode her bike through the largest puddle. I was instructed very seriously on how to carry her gumboots full of puddle water home. I accepted my instructions.

The afternoon light dappled through the trees and laying on the footpath and storm water like white gold. The sound of the leaves making music together in the wind.

Jay is alive. Alone, almost silent, lost far from me in a shadowed place. Avery likewise sending small messages from a world consumed by pain. We have not lost hope. We watch, and listen. Gather patience, tune our ears better. Find warmth to ease the rattle of our chilled and anxious bones. Hold our hearts tight in burnout and loss. The light falling white gold through the trees. The world waiting.

Somewhere as far away as yesterday my phone buzzes like a sick insect. “The thing you have to understand…” says a man’s voice, many men’s voices, overlapping, talking to my empty study late at night, blending like a hundred radio channels left on, all talking and never hearing. The thing you have to understand they say to my empty room. A room away, I read next to my child, sleep next to her, dream alongside her. I have to understand nothing. They buzz into eventual silence.

Everything is wrong. No one and nowhere is safe. Safety is a dream we’re dying for. My throat closes on the phone to them, the words stick. Articulateness is in the ear of the listener, an artifact of relationship, not a fixed quality of a person. The words stick, freeze, cling to my throat like mud.

I can’t explain myself, he says. I’m not good at communicating, she tells me. Her words say yes, but her body says no. 8 years in I’m finally learning to listen to her body. When I get overwhelmed I just agree with anything, he tells me. I’ve heard the same story a million times over, felt my own capitulation in the face of professional gaslighting, group hysteria. Just because I can spell it doesn’t mean I can stop it.

I’m lying naked in the bath, far beyond shame, while my best friend calls hospitals and we try to calculate the value of a person’s life.

I’m watching, who steps in, who panics, freezes, or steps back. I know who my friends are. I know who is sitting by me in that bath, in their own baths, remembering what it is to be naked in the face of injustice, wordless in the face of impatient unsafety.

The rain falls on my bald head when I take out the bins and I can’t help but laugh. The world is so intimate, bright- dark, full of dew. Life and death, words and silence, the mud on my feet and in my throat. Shared and fractured, kept safe, and lost far beyond memory. It is what it is.

Finding my way home

My work life, like that of most NDIS support coordinators, has become a kind of dark vortex that sucks me in. Death and risk and burnout, apathy, inadequate systems, and hopelessly slow processes makes progress slow. It’s like having my foot to the floor on both the accelerator and the brake. Or trying to put out a house fire with teaspoons of water.

But not all my world is work, and I’m lucky enough that Rose has been holding down the family fort for me. When I wrote that I worked for 48 hours without a break, that was only possible because Rose looked after Poppy and our lives for 48 hours without a break. There is so often other forms of less paid, or unpaid, and unrecognised work that props people in paid work up. Rose has been a champion and like me, she’s tired. So I’m pulling back, setting limits, spending more time with my family as best I can. The front lines are no place for a family. But I’m lucky to have them.

Image description: Poppy riding her bike through a big puddle. The puddle is full of bright autumn leaves. She’s riding a green and timber bike. Her cardigan is blue and her gumboots are rainbow.

It’s special to slow down enough to remember they are relationships I cherish, not obligations I’m failing. Sometimes I’m a menace to my own goals and values.

Image description: a basin of plaster paints in bright rainbow colors. Poppy is scraping some green paint onto a plastic palette knife.

Poppy I often do messy play on our days together. Rose finds messy things stressful so it’s a Mummy- and-kiddo activity. On this day we played with paint mixed with plaster of Paris. It goes solid once dry, and has a lovely thick texture perfect for palette knives while wet.

Image description: plaster painting of a plant with long green leaves and pinkish flowers, but Sarah K Reece

Life is not all dark, even in the vortex. So many bright lights remain. They keep my heart strong, my bed warm. The guide me home.

Alone but Alive

Still alive – the best news I wake every morning.

Still alone in the house.

Well, not Alone alone. No support workers. Butter* remains faithful and devoted. The neighbour who originally found them is still dropping in to check on them. The cats sleep on them.

This was their blog post recently:

Keep Going, by Jay

I’m tired. Depression comes and goes in waves. Right now I’m lying in bed, on warm fluffy sheets, under a weighted blanket, with one of my best friend’s puppies. I really really get self care.

Every day I check Jay is alive, boil my kettle, prepare breakfast and morning tea and start work.

Image description: busy study space with many notes in neat stacks on a desk, 2 computer screens, a split keyboard, and a rainbow got water bottle on a chair.


I resource myself in every possible way to give me strength. Friends hold the space with me. It’s a sprint, and then a marathon. I borrow friend’s dogs and sensory aids, call people over who sleep in the home with me when I can’t speak or move my arms anymore. I have vast, beautiful, devoted networks I’ve spent years building and learning how to let love me. They – you – send love, money, good wishes, funny videos, clever suggestions, strength, compassion, sadness, horror. I bear witness and you bear witness with me. It’s a small miracle that we can bear it, this one more atrocity in a sea of atrocities.

I think it’s partly because it’s more than a sad story. Jay isn’t just a victim and I some Erin Brockovitch hero. I’m dealing with disability and stigma myself. Jay sometimes comforts me, shows me their vast strength and patience. We are more than the roles given to us, and less.

Everyone keeps advising me on self care as if it will erase the distress, the sacrifices of crisis work and witness bearing. I found it curious that we love a marathon in sports, or endurance for the sake of testing the limits of the human body against some vast feat: a mountain or ocean or flight to the moon. We understand sacrifices in those contexts, for those worthy goals. But in community services? I’m viewed with alarm and suspicion. My weariness and emotions count against my credibility. We understand adult nappies to train for space but are confused and concerned by me sitting at my computer for so long I’ve got sores on my butt and I can’t move my hands.

What a strange world that mountains are worth conquering and stars reaching for and races are for winning, but for humans, for our own precious people we preach instead a balanced life. I have lost count of how many times I’ve been advised to abandon Jay to the public health, or death, or both. As is always the case with secret tragedy I’ve been hearing stories of devastation and lots from others who have been here. Their takes of death and abandonment, broken heartenedness and reaching the end of all their efforts to find only failure and loss.

We talk about burnout instead of community, and sustainability instead of resources. Jay could have died the other day for the simple lack of a urine test and antibiotics. It took a super human effort to provide them. I don’t regret it. Even if it’s not enough in the long run, I don’t regret it. Not any of it. And I won’t look away.

How to Stand with Jay

It’s my Birthday and other Wonderful News

I’ve had the most wonderful birthday I’ve had since I was 8.

Wow. I LOVED my birthday as a little kid. There was chocolate, friends, adventures, gifts, and cake. My parents created the most wonderful parties imaginable! Games, handmade Woman’s Weekly style decorated cakes, bonfires, crafts, it was frankly the most wonderful day of the year for me. As I got older and my friendships collapsed, my birthday parties remained so coveted that even kids who actively disliked me would turn up and be nice to me for the day.

Fast forward to my teens and the memorable 16th where only 2 kids attended and neither of them knew me, and you have the foundation of the next 20 years where I’ve been a suicidal depressed mess this time of year, often for weeks or even months.

Not today. Today, in the middle of a damn pandemic, owing thousands of dollars to my staff, and having suffered the most intense and exhausting few weeks trying to keep Jay alive… today I’m happy.

I’m Autistic!

I have a diagnosis of Autism largely to thank for that. It’s been life changing good news, opening my world up to patterns and knowledge and workarounds for so much confusing suffering and incapacities. I’ll unpack that more another time, and I know a lot of folks will find it confusing that I’m celebrating this news instead of sad. But for all the folks who get it, especially the sheer liberation of a late diagnosis after years in the dark… WHOOOOO HOOOO it finally makes sense! I’ve spent 4 weeks discovering the sheer peace and joy of weighted blankets, noise cancelling headphones, extremely hot baths, avoiding fridge cold foods, and not having to have hair. 1,000 times a day I make discoveries and undo years of conditioning and fear to find who we are and what we need to function.

Image description, headshot of Sarah smiling straight at the camera with dark green trees behind. They have a shaved head and are wearing bright purple lipstick covered in silver holographic glitter and look happy.

Including how to make birthdays wonderful – such as not having to be scared of all the thoughtful gifts because I know I go blank and don’t communicate appreciation, but no matter how hard I try I have not been able to change that! All that self knowledge buried by socialisation and fear of screwing up my friendships is now unlocking and I’m full of fierce joy.

If you want to give me something this year for my birthday – share my Stand with Jay campaign, or give me an etsy giftcard, or tell me something I’ve said or done or created that has made a difference to you. You don’t have to do any of those, I’m just happy to have you in my life.

Rose has her own house!

In the middle of a pandemic is a difficult time to be allocated a public housing unit, but what can you do? She now lives a few minutes away in a beautiful little place and the breathing room for so many different trauma and sensory and work needs has taken the stress off us and left us giddy in love. In fact…

We’re getting married!

A quarantine wedding! Perfect for the mad social creature that I am who can’t bear for anyone to be left out, and the sweet introvert that is Rose who feels uncomfortable in any group larger than 8. We’re working through the details now and hoping for June. ❤

The small issue of my work life currently not only not paying, but plunging me into the largest debt of my life temporarily put a dampener on the plans for my wages… but we’ve found a wonderful option for a low cost quarantine wedding that looks like it suits us perfectly and should be able to do the entire thing for $3,000, or if we really have to cut the budget, down to $400. (no photos, pretty clothes, etc, so I hope not)

I’m in horrible debt

I owe over $10,000 in wages (still calculating the overtime), plus the tax, super, work cover, insurance, meals, and other business costs such as mental health supervision, HR, my office manager (no one in their right mind wants me calculating the payroll with my math disability). NDIS weren’t going to pay us, then were, then decided not to again. It’s a huge mess and some pretty serious allegations are flying around about me… however all my choices and actions have been documented and I’m an open book and welcome the coming investigations, in fact I’ve done my best to initiate every investigation possible!

So I’m looking into loans to pay my staff, pay back loans from friends who offered money to cover us during the small exciting window when NDIS assured us they would pay us, and pay myself at least enough to buy a more comfortable office chair and get married. I’m sure things will come out clean in the wash but we’ve all got to eat in the mean time and frankly start paying rent again.

Jay is still alive

Between the bloody public health system, NDIS, and the pandemic, all the staff who were supporting Jay have been stood down – there’s no pay and no insurance. Jay is stuck in bed in the house and it’s horrible, but we’re with them online and the neighbour who found them in the first place is helping. Tomorrow we start again trying to get actual decent care set up. But having them alive and being able to take a day off has been a pretty fantastic birthday present. 🙂

Image description: Sarah standing in front of a garden, with bare feet, a short black tunic with Star Wars on the chest, teal shorts and jacket, shaved hair, smiling at the camera

Please #standwithjay

“We will both die here.” The Neurodiversity Community Has Lost One of Its Most Beloved Advocates.

Source: “We will both die here.” The Neurodiversity Community Has Lost One of Its Most Beloved Advocates.

 

Jay is still alone, afraid, overwhelmed. We are trying to create precarious safety after too many broken promises, too many failed plans.

Too many dead and dying disabled and divergent people.

Are we dying of covid? Or restricted access? Abelism? Discrimination?

Rejection?

Broken hearts?

Weariness.

Some days we fight with everything we have

Some days we lie back, numb, broken. Surrender to the pain and the exhaustion. Let the planet turn and the stars wheel overhead. Weep for our friends, for friends we haven’t even known. For people like us. Let go.

And tomorrow

Who knows what comes with dawn?

We wait

Watch

Witness

Love.

 

How to Stand with Jay