Disability

The Gift of Neurodivergent Diagnosis

/ Sarah K Reece / 2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

More human than I want to be.”

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

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

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

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

/ Sarah K Reece / 2 Comments

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

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

“Revulsion. Disbelief. Lurid fascination.“

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

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

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

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

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

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

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

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

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

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

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

Find more of my work about plurality/multiplicity here.

The Magic of Online Disability Support

/ Sarah K Reece / 2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

Heartbreak and peace

/ Sarah K Reece / 4 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Navigating Hurdles to using Disability Support Workers

/ Sarah K Reece / Leave a comment

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

Start with the Least Stressful Task

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

Avoid Relationships

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

Just work on the Relationship

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

Delegate

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

Do a Graded Increase of Supports

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

Get a Lead Support Worker

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

Keep them Outside

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

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

Alternative communication

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

Explore your Overwhelm

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

Guides and checklists and labels

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

Never have just one support worker

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

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

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

Understanding Hurdles to using Disability Support Workers

/ Sarah K Reece / Leave a comment

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

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

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

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

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

Diversity Hurdles

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

Organisational Hurdle

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

Communication Hurdles

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

Poverty and Housing Stress Hurdles

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

Trauma and Anxiety Hurdles

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

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

Overwhelm Hurdle

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

Abelism Hurdle

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

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

Specific Needs Hurdle

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

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

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

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

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

The Tombs of Atuan, Ursula K. Le Guin

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

Being Disabled at Work

/ Sarah K Reece / 4 Comments

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.

Mental health in lockdown

/ Sarah K Reece / 2 Comments

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.

Brains Trust – give me some referrals

/ Sarah K Reece / 4 Comments

It’s been brought to my attention that I am flailing about online in a pretty distressed and intense matter and generally freaking out a lot of folks. I’m going to totally own this one! I’m in an unprecedented (for me, I suspect it actually happens pretty often) mess, and I hadn’t got around to mentioning it yet but surprise! I’m autistic. So I’m currently freaking out most of the non autistic people and most of the autistic folks around me are getting it. I can’t do all this shit and keep all these people going and try to keep you, the general public, feeling calm and soothed and comforted and safe too. I kinda need to, because half of New South Wales currently thinks I’m having the most public psychosis ever lol (funny that when I do have actual psychoses, I am public about them!), all the bastards who are blocking what Jay needs are flinging some mud, and I’m generally careening around doing my best to juggle 1,400 things while on fire. So my capacity to hide that I’m on fire is a bit shall we say, reduced.

Sorry about that – deal with it.

Feedback about how to handle this more effectively welcomed. 🙂 Feedback that amounts to “have you tried being less autistic?” not so much.

Moving on!

Help me with:

I need a GP or physician with experience with complex disability and spasticity. Anywhere in Australia. Frankly I’ll take anywhere in the world. We need specialist competent guidance please and we can link you in with tech. If Jay doesn’t qualify for telehealth with you, we will cover the cost through business/donations. Please get in touch with me asap with your qualifications and availability.

I need someone who can edit my youtube channel, I am using videos to communicate with my team and having trouble loading longer ones. The obvious option is to stop waffling so much but that’s never been my strong suite. Paid, obviously.

I need the NDIS medical clearance for accessing a hospital guidelines. What exactly do my staff need to do to be cleared?

I need a way to get Jay tested for Covid without moving them from their bed. Thoughts?

I have stressed, vulnerable people in shutdown because people keep phoning them. Can someone help me arrange new phones and sim cards with new numbers so they can turn the old ones to silent and address calls as they can. They can’t do this now because this family is trying to stay connected to each other. We need to split up the lines of personal safe communication from the lines of more public and stressful communication. I really like amaysim – can they help? They are both used to iphones. Will pay, obviously, from donations!

I need advocates. Autism, disability, mental health, queer, whatever. Throw them at me. I can’t do this alone, but we can do this together.

Get in touch with me.

How to Stand with Jay

Help me save Jay

/ Sarah K Reece / 5 Comments

Australia is utterly failing the care of people with disabilities in the face of COVID-19. I have been working around the clock this last two weeks to try and save someone’s life. Right now we are a small team of family and support workers and we are all exhausted.

Who is Jay?

‘Jay’, the person who is likely to die within the next couple of weeks unless we can turn things around radically, is a fabulous, trans non-binary, autistic, non verbal wheelchair user with two wonderful partners who are also in severe crisis – one bedbound in an interstate hospital due to severe injuries that occurred while trying to help Jay mobilise without support, the other overseas and suffering chronic pain and crisis. Both are Jay’s supplementary decision makers and both have limited capacity to fulfill that key role without our support.

Catastrophic System Failure

If you know anything about being trans you know what kind of medical care Jay has been getting. If you know anything about being a wheelchair user you know what kind of access to services has been going on – they can’t even access most of their own home. If you know anything about severe allergies you know how easy we’re finding it to feed them and keep them clean and safe. If you know anything about severe mental illness related to trauma, you know just how this hell is impacting them. If you know anything about being non verbal you know just how well most people are understanding Jay’s needs, capacities, and limitations, and the absolute torture it is to be constantly so unheard, overruled, ignored, and humiliated.

Being part of this families life for a mere 2 weeks has been the biggest wake up call for me about the state of disability rights in Australia. We are FAILING, we are being FAILED.

What are we doing?

We are trying to keep Jay alive in impossible circumstances. The little team we have is full of the most incredible people I have ever had the privilege to spend time with, and we are all keeping each other going with so much passion and integrity it frankly makes me cry with relief.

But the problems are too big,
too entrenched, too systemic, and we are too few.
We need a bigger team backing us up.

I know we’re in all crisis with the damn virus. I know everyone is struggling in some way. But many hands make light work. If all you can do is share this post or send some love, I can’t tell you how much difference that will make. We can’t be alone in this anymore, please.

If I can’t save Jay’s life, I am damn well making sure they don’t die alone. They are clean, safe, cared for with respect, have access to their family, and can rest in the certain knowledge that I will be helping their partners pursue every single person and system who has so catastrophically failed them through every legal channel open to them.

It’s not just Jay at risk

Do you know how many disabled people are going to die because of COVID-19? How many are already being refused medical care on the basis they are too complex, too unlikely to recover, and that their lives are not worth living anyway? Did you hear about the Spanish residential home in that was discovered by the army with all the residents dead, abandoned by the staff? It’s started here in Australia. People with disabilities are being abandoned. I don’t know if we can save them all. I don’t even know if we can save Jay. But I can tell you now, those Spanish residents likely died alone in the kind of terror, agony, and despair that is unimaginable to the rest of us. If Jay dies they will not go that way. They will die loved. They will die clean. They will die with their beautiful assistance dog cuddled next to them. With a tender hand whenever it is needed. With a voice in their ear telling them we are here. We are watching. We see you. We bear witness. You will be remembered, always. Join me.

How to Stand with Jay

Being different in this world can be such a source of strength and sorrow. There’s probably never been a harder time for most of us than right now. Who do you know with a disability or diversity? Reach out. Check in. Even if we can’t save them all we can tally the dead. No one dies alone.

Never the Spanish Residential Home again.
Not here. Never again.
Help me make this happen!

Pandemic Resources for supporting People at Risk

/ Sarah K Reece / Leave a comment

Formal supporter and informal/family carers alike are all facing new challenges at the moment with the pandemic. If you’re anything like me you’ve been scrambling to get in front of the situation, make sure basic needs are being met, and take care of yourself at the time. It’s a hectic time! Here’s a few resources I’ve created or come across which may help speed up your capacity to adapt, predict, and head off potential issues and risks.

Pandemic Plans

If you’re a support coordinator or social worker you may need a formal written safety plan for your most at risk clients/participants. Larger organisations are using overall plans, which is fine, but if you can doing personalised plans for at least the high risk folks – ideally in consultation with them – is good practice. It tailors the plans to the person and is an invaluable handover tool if you become unwell and need to shift your caseload to someone else.

Informal family and friend carers, a written plan may seem like overkill, but being able to share it with others does have value – assuming anyone else in your formal or informal networks has the same perceptions of risk and ideas about safety as you and the person with the disability (PWD) is a common point where things start to unravel. Fewer assumptions, more communication!

There are a few examples being kindly shared by people, so if you don’t have a public health background you don’t have to start from scratch. This is mine and you’re welcome to borrow, use, modify any aspect of it provided you don’t on-sell it. 🙂 Pandemic Safety Plan.

Karina and Co have generously made their Pandemic Safety Plan public too.

The Growing Space have also been agile responders to the crisis and have provided some invaluable free resources such as this fabulous Pandemic Checklist.

Free webinars

The Growing Space have also teamed up with Disability Services Consulting (DSC) and are offering a free webinar about responding to the challenges of COVID-19 for participants, families and PWD.

They are also running a free webinar for Support Coordinators.

DSC are offering this training on preventing infection.

Resources

DSC have their own fabulous list of COVID-19 resources for people with a disability including general and NDIS specific information.

I hope that’s helpful. Take care out there everyone. If you need some more specific advice or help reach out to me or the folks I’ve linked here, I expect the webinars in particular will be excellent.

Support your community through Coronavirus

/ Sarah K Reece / Leave a comment

It’s a mess out there, I know. Whatever impact it’s having on you, I know that we all do better when we are connected. So here’s some thoughts about boosting your connections over the next month, for your own health and that of others in your community.

The disability paradox

If you’ve never had to deal with anything like this before – you have so much to learn from folks with disabilities who are used to struggling with medical anxiety, lack of clarity, having to self-isolate for health, trying to negotiate working from home, and limited access to essential resources. We are your mentors!

We are also under horrible strain. We have heard from many places that people don’t need to worry because it’s only the vulnerable people like us the coronavirus is likely to harm or kill. We are facing extra strain as resources run thin and supports struggle to keep up. Be very mindful of us and how frustrated, devalued, hurt, and angry many of us are feeling at the moment. Reach out where you can and remind us we are valued! Offer supports and learn from our expertise. Together we have got this.

If you are able to be active

Here’s a fabulous little template that’s been going around online you can print or hand write and leave in letter boxes or on doorsteps. According to the ABC it was developed by a Cornish woman Becky Wass who has posted it to her older neighbours. Here’s a printable link for download.

Image description: printable template with the heading Hello! If you are self- isolating, I can help. For full details see the link in the text above.

If you are self-isolating

Rose is unfortunately at high risk of complications if she catches COVID-19 so we are self isolating now. If you are doing so – thankyou and good luck. I will be creating a lot of online resources over the coming weeks so get in touch if you want to be notified about them. I’ve created my own letter which we printed and left under painted rocks in our area yesterday. Feel free to modify or copy yourself, here’s a printable link for download.

Image description: printable template with the heading COVID-19: Take care at home. At the bottom of the image is a painted rock made to look like a bus. For full details see the link in the text above.

Connection is the antidote

Communities are more than neighbourhoods. They are our friends and family, our online connections, our workplaces and support groups. The mental strain of a pandemic and quarantine can be huge but many factors such as boredom, loneliness, anxiety can be easily addressed. One of my friends hosted an online video craft session tonight. A physio I work with has sent out a comprehensive, informative, and reassuring email with clear pandemic safety protocols to their staff. Someone dropped us some lovely eczema friendly soap this afternoon.

If you’re looking for some extra resources I’ll be sharing a draft pandemic safety plan for vulnerable clients within the next couple of days, and here’s a couple of articles I’ve found helpful, courtesy of Headspace, and Prof Nicholas Procter:

Don’t panic, plan. Connection isn’t a crazy response, it’s part of the “tend and befriend” crisis impulse – less well known than fight or flight, but in this instance, far more useful.

Reflections on ‘Better Together’: coming to grips with Diversity, Inclusion, and Access

/ Sarah K Reece / Leave a comment

What an impressive event Better Together 2020 was. I have a particular soft spot in my heart for people who aim big. An inclusive LGBTIQA+ conference intending to tackle difficult topics is a seriously ambitious project, and I wonder if anyone involved had much sleep the fortnight of it all! It was messy, excellent, imperfect, exhausting, brilliant, frustrating, and absolutely worthwhile for me.

During the conference I shared my personal reflections called Safety and Diversity.

A couple of my newer roles are doing community rep work on behalf of LGBTIQA+ folks through the Freelance Jungle, and SALHN (the Southern Adelaide Local Health Network), so a big reason for me attending was to learn more about some of the queer community I don’t know so much about. It’s very difficult to rep such a diverse and complex community and I take it pretty seriously that I need to have at least basic knowledge across the whole spectrum to be effective. A conference is perfect for this, I can engage more than I can with books, and I’m not putting too much of a burden of emotional labour on friends or acquaintances to re-explain their lives 101 for the umpteenth time.

So I’ve come home equipped with far more knowledge about the critical challenges that need support for the Intersex community, the Asexual community, people in non-traditional relationships, and folks who are both queer and autistic. I’ve also got contact details for other advocates who have offered to cast an eye over anything I’m not sure of and help me find my way. Why is this so important? Well here’s a statistic that blew my mind – of all the funding that goes to LGBTIQA+ organisations in Australia, less than 1% is spent on the specific needs of the Intersex community. The distress around being surgically altered to better fit a gender without their consent is intense. As one person said with passion and eloquence “My gender was taken from me with a knife – this kind of inclusion harms people”. People assume this community is being supported because their initial is in the title, so other funds are not provided. This is heartbreaking and we must do better.

Many difficult topics were discussed and a wide range of people were given a platform from which to speak. A huge number of attendees were given bursaries to support their involvement (including me), and outside of the 2 day conference, a collection of caucus’ on specific themes such as trans and non-binary gender were held as private spaces for those communities only. The efforts towards inter-sectionalism were huge, we heard from a lesbian police officer, survivors of ‘corrective rape’, migrants, people of colour, survivors of conversion therapy, parents of trans children, teachers, and so on.

One of my favourite topics were the sessions about being allies. I’ve only ever heard this spoken of as an insider/outsider divide between queer and cis/het (nonqueer) folks. This conversation was much more nuanced and talking about many marginalised identities and communities, the need for allies to support each of us and our obligation to be allies to each other. A woman spoke about her efforts to support organisational change in her workplace and how she has been able to sustain it partly because she has had her own allies she can call on in need or frustration. They are webs and networks. I’ve come home a better ally of some, with more allies of my own, and excited to support others to take these steps themselves.

Another topic I got a lot out of was the sessions about cultural and organisational change efforts through mechanisms such as Rainbow Tick Accreditation. It was especially helpful to hear how they have been put together, the research behind them, and the challenges organisations can struggle with. I really appreciated the speaker from one of those organisations, a Jewish Care community, speaking honestly about their efforts through Rainbow Tick. He spoke about the difficulties when “virtuous intent (is) let down by human error, not malice or phobia” and acknowledged the challenges this poses for people struggling for acceptance, and those learning new practices, terms, and processes to be inclusive. 

Image description: 2 people sitting on a stage in front of a digital presentation. The title is: Working towards “cultural safety” for LGBTIQ people. A large rainbow coloured arrow with small text describing steps in a change process, points to the Rainbow Tick Accreditation symbol.

Better Together was not without challenges however. Inclusion can be full of good intentions and just as many missteps. When you are trying to be inclusive for a community you are not personally part of/know much about, missteps are also inevitable. Especially when you are trying to create inclusion for very diverse communities, there’s a real challenge. For example, the Disability caucus was attempting to meet the access needs of such a wide range of folks – mobility needs, vision impairments, Deaf and hard of hearing, sensory sensitivities, chronic illness and pain issues of exhaustion, and so on. It was a medley of contradictory access needs. When we changed from clapping out loud to using the Auslan for applause, the Deaf and signing folks, and those who find applause unbearably loud all appreciated it. The vision impaired and blind folks however, could no longer tell what was happening during the applause because no one realised to describe it. The app used for communication was super helpful for some and bewildering for others. The loud purring air conditioner was perfect for some, too cold or not cold enough for some, and distressingly too loud for some.

This is such an important aspect of inclusion. There is no such thing as universal access. Access – defined as whatever you need to show up and be included – be that sensory quiet spaces, ramps, a creche for kids, etc – is not a one size fits all but a buffet of various tools and options, some of which fit well together and some of which blatantly clash. The interfaith conversation for example? Was scheduled on the seventh day of the Jewish week, Shabbat, where observant Jews could not attend. The 8 hour days were exhausting for folks with chronic illnesses and pain conditions. The small rooms with locked doors were stressful for folks with trauma histories. Folks with mobility aids struggled to push through crowded corridors between sessions, and if they arrived late often couldn’t fit into the next session and missed out. Access is challenging. Access needs we are unaccustomed to is basically a guarantee for messing up somewhere.

Access is a universal need. But those in the cultural majority or with the most power have created cultural norms that fit best with their access needs. It’s not that some of us have them and some of us don’t, we all have needs. Some of them are fitted so neatly into our regular lives we’ve never thought about them. Some of them are neatly able to be fit together – most folks can ascend a gentle ramp with a hand rail, very few are excluded by that design. Some access needs are near universal with age – most of us will need a mobility aid at some point due to injury or illness and it’s helpful if we can fit through the doorways of our home and into our own toilet. Most of us will experience some level of change in our eyesight and hearing, in our stamina and the strength in our hands as we age, for example. Some access needs clash – such as sensory avoidant autistic folks who need quiet spaces and not too much visual bright clutter, and the needs of parents of young kids who need child safe environments with engaging toys and activities. (at times those needs are reversed for those communities!)

This doesn’t mean giving up on access and inclusion. It means ask for help. Assume we will fumble. Get allies and peers to support our efforts. Be humble when it doesn’t work – take criticisms and feedback on board for next time. Have a strategy in place for warmly supporting anyone our access choices exclude. It’s inevitable that access choices will exclude some – the larger and more diverse the community, the more inevitable this is. In those cases, it’s crucial to anticipate this and have a respectful response ready. Some of those people are very hurt and very angry because they are so marginalised and so tired of being excluded. Not being able to access even a so called ‘inclusive space’ will be salt in the wound, and we need to be honest about this. Diplomatic engagement with such communities is essential, as is offering to share resources where possible and inviting them to ‘fix’ the issue themselves – plan their own caucus, set up their own spaces, put their skills, knowledge, and capacity into it too. Rather than a minority trying to solve all the problems, the organisers become the facilitators of a diverse range of spaces and opportunities, supporting cross communication and respectful engagement. We cannot ‘fix’ each other’s problems but we can build solutions and pathways together.

Navigating criticism in community work is a topic I’ve written about before because it such a challenge and such an essential skill set.

For a conference like this I’ve been tracking the feedback and conversations online and I can see that many are contradictory (wanting the conference to be low cost to remain accessible to the many LGBTIQA+ folks on low incomes or welfare, and wanting spacious, centrally located venues with many large rooms. Wanting shorter days for folks with folks with lower endurance, but longer caucuses, and not having multiple events running at the same time where people belong to both communities. Asking for better input from diverse communities, also wanting people’s time and expertise to be valued and paid, and wanting to keep administrative costs low…) Like the fabulous good/cheap/fast: you can have any two out of three dilemma, all things are valuable but they are rarely all achievable at the same time. Compromise is a painful but essential aspect of any community resource and that can be hard to swallow. Like values, all are important even when they are in tension. There will not be consensus about which are most important, and when the folks actually carrying out the work make calls, it’s up to them to decide which are most achievable and how to navigate that compromise. It’s not okay to allow criticism to crush something that is important and meaningful – while not able to be all things to all people, or for angry people to crush the capacity of those who are not yelling across the divide but putting their skin in the game and trying to create something that helps. It’s also not okay to blanket refuse to acknowledge the costs bourn by those we exclude, and the unthinking patterns of our exclusions that fit the systemic racism, sexism, rankism, ageism, etc already embodied so often in our culture. Between these two poles lay allies, growth, hard conversations, good intentions, calling out, calling in, and an acceptance of the imperfection of our resources while also celebrating them.

At the end of Better Together, I wrote notes on what I’d seen work and where things could be improved. I also did some informal interviewing with people I didn’t know and took down their ideas, the best of things they loved, and what they’d love to see changed. The next conference will be Adelaide and I’m hopeful that we can learn and grow and make something fabulous, safer, imperfect, more inclusive, and just as valuable in 2021. I’m happy to have come home with great new contacts and a lot more information, and I’ll be putting it to good use to better support our fabulously diverse communities. 

Where I’m going in 2020

/ Sarah K Reece / Leave a comment

I’ve just arrived safely in Melbourne for the LGBTIQA+ “Better Together” conference. (Say hello if you’re coming too) I’m tired and excited and really looking forward to it and meeting all the other amazing folks.

Image description: smiling person with short hair and a bright blue shirt with the image of a kitten asleep under a book and the slogan “Curl up with a good book”.

I have Rose to thank for the cool t-shirt. I’ll be away for 5 days and my heart aches knowing the nights will probably be tough for Poppy. I, on the other hand will probably get a bit more sleep while I’m away. Parenting dilemmas!

ID person in a blue shirt and a child in a yellow shirt tendering hugging each other

It’s been a full on couple of months. Massive bushfires have been destroying huge areas of Australia. It’s an unprecedented disaster with the largest evacuations we’ve ever experienced. The losses are staggering. Some folks are in the thick of it, while those like me who are lucky to be safe are watching with horror and confronting survivor guilt and vicarious trauma. Helping out through donations and community support eases the helplessness and is a small balm to the fury and grief. Sometimes it’s big things, others it’s smaller gestures like taking fruit to the local wildlife carers or joining in a working bee for a local damaged farm. Anything helps to unfreeze, to ease the impact of months of bad news and horrifying casualties.

If you’re feeling paralysed, silent and distraught like I’ve been, you might find it helpful to look for something small you can do and do it. Look for good news, for people’s kindness, and share that too. Walk away from it at times to build your capacity to stay engaged and not burn out.

A lot of people are in terrible pain, facing life threatening conditions, or handling thousands of burnt animals. These are all high risk for trauma, and the survivor guilt of those of us who are lucky can lead us to torture ourselves as if more suffering would somehow help. This is part of vicarious trauma, and things that help with this are connection with community, breaks from it, humor, and keeping a clear sense of responsibility.

It is not my fault, I do not deserve either my good fortune or to be punished. I am a better ally and supporter when I’m not overwhelmed.

The other major focus for me has been my work and studies. I’ve been in an intense process of wrapping up projects and studies and launching new ones.

I’ve completed my grad cert in public health with mostly high distinctions. The mentoring program with Sally Curtis has started and been full of invaluable learning already.

I’ve started in two new LGBTIQA+ representative positions, one on the Consumer board with the Southern Adelaide Local Health Network (the hospitals, rehab facilities and so on). The second with the Freelance Jungle as an admin on the team which supports a 5,800+ online group of Australian and New Zealand freelancers. I’ve been a member and then patron of the group for a couple of years, and it’s a fantastic resource with a great focus on mental health and inclusion. The Better Together conference will help me understand both the needs and resources of the wider community.

Consulting and community development work has been so satisfying last year with a creative health project in prisons with SHINE SA and a peer based research project about systems change for people living with chronic illness with TACSI. I was so pleased to support these, they were both work I’m very proud of and look forward to sharing more about.

With face painting I’ve been getting more work from councils and organisations aligned with my focus around diversity and inclusion, such as schools for autistic kids, or queer events, which I’m very happy about.

I’ve launched a whole new arm of my business, providing independent support work for folks through the NDIS, with a special focus on mental health and diversity. It’s going very well and I’ve found that I love it even more than I anticipated. Being able to cone alongside people in their lives and homes and provide personal peer based support that is therapeutic but not ‘therapy’ is simply wonderful. Like a doula it’s a flexible mix of practical and emotional support, looking towards bigger goals but also very present in the moment.

It’s very similar to the group work I used to do in mental health services, such as facilitating the hearing voices group. I’m part of a small community of practice with a professional organiser and a handyman, and I’m setting up supervision and a network of resources. I’ve been extremely busy with it which was a bit unexpected – it’s taken off very quickly and I’m largely booked already.

I’m also booked to deliver a new series of local creative workshops which I’ll share more about shortly.

My work life is all coming together under an umbrella of creativity and diversity. I’m very passionate about it and excited to watch it grow in 2020. I’m putting applications in for further part time studies to continue to develop my skills in this area, and looking forward to getting back in the studio sometime to pick back up my current project there.

Thank you all for your encouragement and support, it’s taken me awhile to find my niche but I’m incredibly happy to be doing what I am, and feeling very aligned with the values and quality that links my different business areas together. 🧡 If I can support you or your project in some way, get in touch and let’s talk.

Art speaks for us when we are without words

/ Sarah K Reece / Leave a comment

A friend recently went through a huge ordeal, their kiddo had been suffering from debilitating headaches and was suddenly diagnosed with a brain tumor and scheduled for surgery.

I live on the other side of the world. You want to be there, to hold hands and make food and crack jokes and bring tissues. Everyone feels helpless and mute.

The surgery was a success and the long rehab is going well, albeit tough. I thought about the workshops I’ve run with people who’ve been marginalised and harmed and ignored, the power of a zine to bring together deep insights and bypass all the rules and blocks and limitations that inhibit us. So I mailed a gift pack. An example zine of my own, a brief set of instructions. And a zine I created based on online photos of the experience.

This is one of the simplest styles, a single piece of paper, cut along the middle, folded into a small booklet of 8 pages.

Sydney sent me a zine in return, which was beautiful and made me cry. These moments of connection are precious and healing. Art can help make it possible. I hope you find a way of reaching out too.

Parenting with chronic illness

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Each gallbladder attack I have is taking longer to recover from. My fibromyalgia flares and I feel like I’m recovering from getting a good kicking. I recently learned that I’ve been cutting too much fat out of my diet to try and prevent extremely painful biliary colic episodes. The extra low fat diet left me with headaches, exhaustion, foggy brain, and chronic pain. Bumping my fats back up has been quite magic and I’m feeling much better. I’ve been scheduled for surgery to remove the gallbladder next month.

Image description: A young child on a park swing. There are trees, lawn, and bark chips. A small green bike is lying on the ground by the swing.

In the meantime I’m muddling along. I used to be so afraid of this place: sick and trying to parent. It is hard. It’s really hard. I’m so incredibly fortunate to have good people around me, that network I put effort into building has saved my life. It saves me when I can text a friend in distress instead of crying in front of Poppy. When there’s someone to pick Poppy up from the ER so I can be treated. When our daycare provider lets me arrive late while I try and coordinate a crisis. My world has flexibility, care, accommodations that ease the sharp edges of my limitations and soften the harshness of the things I’m dealing with.

This creates capacity I wouldn’t otherwise have. So rather than merely the nightmare stories I feared, mostly Poppy and I muddle through. Rose takes her so I can rest or nap. I walk her to the park so she can ride her bike. We snuggle under a blanket with a hot water bottle and watch a movie together. We do crafts or painting on the dining table. She plays in the back yard while I hang washing.

I have a collection of low energy/high pain ‘tough day’ activities like this I can enjoy with her. And I’m still working towards the lower daily effort/systems and routines/life on the easy setting changes I started making last year so that my home and work is efficient, sustainable, and frees up as much energy as possible for the things I’m passionate about – such as parenting, care giving, socialising, adventures, and creativity. With thought, planning, and support, it’s actually still wonderful to parent even in a rough health time. I’m incredibly fortunate and I love her to bits.

Love, by the water

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Endometriosis, adenomyosis, PMDD, and PCOS is an extremely unhappy combination of troubles. For me it means very heavy, painful, unpredictable periods that often trigger severe depression and sometimes suicidal distress.

I’ve spent most of the last 2 days in bed with a heat pack. Today Rose took the lead and set up a beautiful family trip for us all. She made savory muffins and took us all down south to a beautiful beach for the afternoon. I went for a gentle walk in the surf, Poppy collected rocks and shells, and we all enjoyed watching a seal frolic in the light rain.

Image is of Poppy, aged 3, wearing fabric rainbow butterfly wings and running along a beach.

It was so joyful and relaxed and a safe space to just be. As the rain fell lightly into the shallows where I walked I wept. My heart has been full of doubt and confusion and heartbreak lately. Watching the light catch the water and the foam on the sand, I’m so grateful.

One of the things I fell in love about Rose was her ability to create these beautiful adventures: inexpensive, simple, and so connected to the moment and the environment. I’ve often yearned for these things but when I’m sick or distressed I struggle to arrange them. My initiative is paralyzed, so I yearn but cannot act. I recall many days when I lived in my unit by the beach, longing to go down to the water and unable to. I could never have made it to the beach today, but with her doing all the heavy lifting I could be swept along to something beautiful and nourishing. I fall in love all over again.

Finding Ways out of Burnout and Overwhelm

/ Sarah K Reece / 4 Comments

Poppy and I went adventuring in a creek recently. It was so peaceful. There are struggles and difficulties all around, then there are these islands within it all that are so precious, where everything is still.

I clear a space and ignore my phone. No multi tasking. The curse of the freelance life – work creeping into every waking moment, is deliberately put aside. I don’t problem solve, plan dinner, handle admin. There is a rare clarity, ice clear and deeply refreshing.

Since I last burned out a couple of years ago, I’ve been quietly exploring a private project: what creates overwhelm, and what reduces it? Burn out is bigger than overwhelm, but for me it was the biggest and longest issue I had to deal with. I see overwhelm everywhere, not just at work but in everyday life, most especially for parents. It’s often framed as part of various mental illnesses and disabilities, but it’s such a common and difficult experience I feel it needs its own name and space to be understood.

For me, overwhelm is a chronic state of exhaustion, scattered thought, poor concentration, emotional intensity and changeability, and inability to grasp or manage tasks.

Reflection

I’ve been borrowing ideas from many sources, and using my own therapy as a kind of compass to treat my own overwhelm. I try things out and notice if my overwhelm deepens or eases. I’ve found reflective journaling is ideal for this. Each day or two I journal and notice what’s helping and what’s making things worse. I get an overview that’s nearly impossible for me to find any other way.

Some days when my overwhelm is high, I can barely walk into my shed. It’s way too much to handle, a million things all needing organisation I simply don’t have and I feel such panic that even opening the door makes me want to cry. Other days when my mental space is going well I can walk in and my mind is clear. It’s really not so bad, just a few bits and pieces. I can see what needs to be culled or sorted, packed better, given away. It’s so manageable. The difference can be startling!

Trying harder doesn’t help

For example I’ve found overwhelm is often embedded with false beliefs about productivity – that doing more and working harder and longer are essential to productivity. So my intuitive solution for the early signs of overwhelm (one of which is reduced productivity) is unfortunately to do a bunch of things that are likely to make it worse.

As counter intuitive as it feels, rest, doing something completely different, and setting aside proper time to deep dive instead of scattered multi taking are all very useful for productivity.

Understand the weight of the invisible mental load

One of the challenges about burnout in life rather than work is how difficult it can be to get a break from it or even see it clearly. Some of us find a lot of our work isn’t only unpaid but unrecognised, even by ourselves. We feel exhausted but can’t name what we’ve done all day, can’t take time off but don’t use the concept of being ‘on call’, and end up fitted to the gaps in the somehow more important activities of study or formal paid employment being carried out by those around us. Being able to notice what we do and who we do it for can be essential to recovery. I have found simply tracking my time has been eye opening in terms of things like how much sort work I do for others on a daily basis. This isn’t a bad thing – unless I don’t factor it in. This is a very interesting article on the topic of invisible mental load.

Executive function capacity is a limited resource

I’ve also found it useful to consider ideas around ‘executive function’ from the autism community (here’s a great post about an adult autistic’s perspective on his struggles with executive function limitations). Executive function issues also turn up a lot for folks with ADHD, trauma, and dissociation. They relate to our ability to plan, sequence tasks, keep track of time, and prioritise.

Many higher level brain processes are limited resources. If I’m living such a chaotic life that I need to use a lot of thought to plan hanging out my washing, that’s a lot of capacity being used up on tasks of daily living. Routines, structures, and rhythms are ways I can take those tasks out of intense intellectual activity and into habit, which is largely mindless and takes little mental energy. (which can help explain why some folks become very wedded to routines – if you have limited executive function your routines are your safe way of keeping life going)

It’s the same process that makes driving an intense intellectual process for a new driver, and something that can be done on autopilot for an experienced one. Autopilot frees up capacity for other tasks, or mental rest.

The impact of decision fatigue

Decision fatigue is also an important aspect of overwhelm, and one that burdens those of us in poverty much more than others because poverty involves constant trade offs – and these are the most mentally exhausting decisions we make, between two or more important things when we can’t have both (like food or medicine). There’s a great article here that unpacks this more as well as a lot of interesting research behind the ideas.

Sometimes the job is impossible

Overwhelm is often a response to a catch 22, or an impossible ask. Parenting through adversity of any kind often involves trying to accomplish very challenging tasks, such as supervising very young children while severely sleep deprived or ill, or trying to provide quality childcare and household management simultaneously,or meeting the physical, social, and emotional needs of several children of different ages/needs, at the same time.

I sometimes find it helpful to think of parenting as if it was a job, and thinking about what my union might be asking for when they want better, safer conditions. Do I need less tasks? More time? More skills? Rest? Support? All of the above, of course, but some weighed more than others, and some easier to find solutions to.

When I ask myself ‘What’s usual in thr paid versions of this role?’ sometimes the pressures and catch 22s emerge in a way I couldn’t see before. It can also help me to see and articulate difficult concepts such as I love being with my kids but I hate trying to create fun safe times together and also sort out all the washing. When everything merges together it can hard to figure out where things are actually working because it all feels awful.

‘All or nothing’ is a game you always lose

Another thing I’ve been finding helpful is to watch out for the ‘all or nothing’ mindset that kicks in when I’m overwhelmed. I know I need a break and I’m dreaming longingly of the weeks away on camp, but turn down the opportunity to have ten minutes to myself because frankly, what’s the point.

I have been finding it difficult to make ‘wild time’ since the kids came along. I miss my long late nights writing poetry, driving under stars, and sitting by the sea. For the last month I’ve experimented with 10 minutes by myself in the bedroom each night, with candles and my journal. Part of me hates this – where’s the spontanety? The stars overhead? The long hours? How can wildness be scheduled?

That part is right, it’s not the same.

And yet, it’s better than not doing it at all. It’s still a candle, a bone pen, a sacred space. It might be a snack instead of a full meal, but it still nourishes my soul. And a nourished soul speaks its needs louder, is more playful, resilient, and certain. It keeps seeking a heartful and passionate life. 5 minutes of painting is better than not touching the brushes for 5 years because you don’t have the time.

‘Freeze’ is a type of threat response that looks like overwhelm

I’ve found helpful with overwhelm to understand what scares me. This is much harder than it sounds. Sometimes I know I’m scared, sometimes I just get sick, or develop new pain or symptoms. As someone with childhood trauma I have the common but deeply frustrating experience of sometimes learning about my feelings through problems with my body and health. This means having to interpret the myriad of random symbolic issues that turn up. It can be a slow and frustrating process.

Other times I’m well aware I’m stressed, panicked, frozen, blocked. But I often have little idea why or how to get past it. Why is it that some days emails make me freeze and are impossible to reply to? I’m sitting at my desk in tears, humiliated and full of frustration and self loathing, but I cannot make myself do the un-doable task. We’ve all heard of flight and fight but are less familiar with freeze. If you are scared and don’t feel up to a task you are facing, some of us freeze and shut down.

Overwhelm can be a response to abuse

Not being able to think straight, remember, plan, or use higher mental facilities around an abusive person has long been recognised as a common problem for people being harmed. Making plans away from them is often essential because deciding what to in the moment can be impossible. There nothing wrong with you and it’s not unusual

It’s also not uncommon when the abuse is internal. For example, if I’ve often used a ‘stick’ to motivate myself with, forcing compliance even when I’m frightened, tired, or overwhelmed, using meanness and bullying to push myself through hard tasks, I’ve set this scenario up. Overwhelm at some point is as inevitable as a plant wilting without water.

Empathy is restorative

Making safe spaces to deeply listen and empathise with myself has been crucial. I’ve been working with an art therapist on this, instead of trying to push through or problem solve, instead to deeply and non judgementally listen. It’s harder than it sounds!

Deliberately seek the opposite

There are many opposites of overwhelmed such as calm, content, flow state, and confident. Some of them will resonate as more important to you than others, and you can explore more about those ones.

For me one of the biggest costs of overwhelm is in my confidence, so a side project that’s developed out of this one has been: what builds my confidence? I’m finding resources like this TED talk insightful. Repetition builds confidence which is useful to be aware of given how often I work at edge of skill, seduced by the appeal of a challenge. I adore challenges but I’m also anxious, vulnerable to imposter syndrome, and discouraged by failure and rejection. Learning to pull back on the challenges a little and build on more successes is helping greatly. Intentionally working to reduce my overwhelm this way has been incredibly helpful for me.

If you are struggling with overwhekm or care about someone who is, take heart. I hope there’s been some useful food for thought here. Our interdependence is invaluable in situations like this. Someone we can swap scary tasks like booking each other’s dentist appointments. Sometimes the one with more executive function can help break down a task or sequence a series of goals for someone struggling. Many articulate people with these challenges are sharing their strategies so others can borrow and build on them. You can tweak and change and develop things so that the overwhelm eases and you can think again. Best wishes.

Love amidst pain

/ Sarah K Reece / 4 Comments

At times when I’ve been very broke, I’ve felt that a troubling and difficult to name challenge that has been not the obvious stresses – affording bills and medical care and food, but a subtle one. Judged according to choices it’s assumed I’ve made, my life, my clothes, my presentation fits me to a standard. If there’s only one pair of jeans in the op shop that fit me, their cut and colour says little about me except my lack of choices. When I’m with others who’s choices are also constrained, this is understood, and we envy each other when personal taste isn’t inhibited by limitations. It’s a joy when we can forge something close to our sense of self from what we have.

Today I have been resting. My mind is burned out trying to understand some things that are extraordinarily painful to me. I have read and watched movies and curled up on the couch under a blanket. The weather is glorious, late summer and soft sunshine. I am recovering from a horrible head cold that has made my whole body ache. And I am thinking about my life not in an abstract sense as if I could have done anything, but from within the constraints I have faced. The long and terrible illnesses, the homelessness, the loneliness, the terrible suffering and self loathing I am still recovering from, growing up queer and unsafe. I think about the cards I was given and how I have played them and I am at peace. I have an incredibly beautiful life. I adore my family. I have navigated such heart rending and terrifying challenges to be here and to love the way I do from a heart so starved and shattered. It is so far in many ways from what I wanted or hoped for. But it so glorious given how lost I could have become. Queer and Christian can be a death sentence, and when I return to my old home at times, I can see myself on the floor of the bathroom like a ghost. I am curled around myself screaming silently and begging god to undo what I am. I have faced the absolute terror of hell and exile to stand here today. I have faced suicide and self harm. I have faced a loneliness so deep and profound that it felt like it was erasing me from the inside out. I have navigated multiplicity and psychosis, caring and needing care, the loss of friends, the heartbreak of not finding my place in employment.

I would not have chosen this path. I would never have chosen homelessness, or chronic pain, or my string of failed attempts to haul my life back onto the track I was aiming for. I would not now choose our vulnerablity, our financial insecurity, our public housing. I aimed very high and where I’ve landed so far, it turns out, is incredible.

I adore my daughters with all my heart, and the joy in parenting them surpasses anything else in my life. My beloved Rose and I are restored to each other after the terrible strain of last year. We are learning that knowing each other for 6 years does not mean we know each other. That love is in asking the questions and listening closely to the answers. The hand reached across the gulf of miscommunication and expectations. There’s so much love here.

Yesterday I went to a wonderful talk by local artist/illustrators about how they navigated their work while raising young children. It was wonderful and I learned so much. I also realised that their process was only fitted around children, while I was trying to build mine around illness and disability and many other things. It has not been easy and yet I am finding a small slow path.

Yesterday I went to the funeral of someone I had not known very well, the husband of a dear late friend. I was not sure I would be able to go. Death is not something I am reconciled to since I had my terrible breakdown. I felt angry and humiliated by my vulnerability to it. Rose eased me into finding the thorn in my paw. I was terrified of my secret, nagging judgement that his life had been wasted. I recalled heartbreaking conversations with him about his lack of the spark of joy, his envy of my passion. He too, faced many challenges in his life. Only when I found this fear could I see that my block was little to do with him, but my own secret terror that in some way I couldn’t even find words for, my life has added up to nothing.

So I went to the funeral. They read a poem by my late friend. It hurt so badly it felt like I was dying for a time. My heart broke for his friends and family. My heart broke for my friend, and how hard friends can be to come by. How irreplaceable each of us are in the web of our lives. I thought of the millions of people in the world and how easy it is to be lonely. How hard it can be to listen as deeply and carefully as Rose and I are learning again to listen to each other. How life is neither all triumph nor all loss. I listened to the heartfelt eulogies by his friends and saw both his pain and his life in a softer and more loving light. I thought about my friends. I thought about how I would be remembered if I died today, the way I would not want my sorrow or my struggles to be the focus, but my love and the people and things I have loved and tried to learn how to love well.

I went to a therapy appointment yesterday to open in a safe place a big painful box about family and history and abuse and relationships. I cried so hard I couldn’t breathe or stay seated on the couch. I couldn’t stop. So much love and so much pain. Agonising dilemmas that are sunk deeply into my skin like razor wire. No easy answers or lights on my path.

When I left I splashed cold water on my face and hair and wrists. I took a cold drink in a small paper cup and I staggered carefully to my car. I sat with my journal in my lap and no words until the urge to vomit passed. I drove home carefully into the sun, taking the route with the most shade cast by trees, and crept into my home to hold my little girl and a hot water bottle for the rest of the evening.

Today I look at what I have built, what I have made of my life with what I’ve given, or found, or forged, and I am content. It is humble but no secrets rot beneath the floor. It is glorious. I am limping and dancing, both. There are many beautiful and wounded people I have built relationships with, of one kind or another, tended these like gardens that need work and effort and understanding. Learning how to listen, how to speak, and how to endure. Gratitude for those who came before me and made my world possible, those who changed my world so that queer people were not vile, those with disabilities were not repulsive, trauma was not a weakness of character, and that those who were sick or poor should be given a wage to allow them shelter and food. I remember their sacrifices and their work and I am thankful. I remember them when I choose to make sacrifices and to work towards a better and kinder world for my children and their children. There is so much love here.

Dancing with depression

/ Sarah K Reece / 3 Comments

I’ve been feeling raw and bleak at times lately. Today I was diagnosed with PCOS (a hormone condition) and PMDD (a sensitivity to certain hormones that causes a bunch of symptoms – my biggest struggle is severe depression on day 1-2 of my cycle. Given I already have mild endometriosis and severe adenomyosis, it’s making Poppy feel like a miracle and I’m holding her pretty close.

I’ve also had a severe digestive virus and a UTI/bladder infection which has knocked me for six.

It’s been a rough 6 weeks for me with many illnesses half of which have me quarantined and infectious. In between illnesses I’m happily enjoying downtime, and sunshine, and art, and chasing up friends for some much needed connection. I’m also about to be back in my studio working on a project dear to my heart which is exciting.

I’ve been rereading Lost Connections by Johann Hari recently which is a beautiful and well thought out book. Strangely enough in the light of it I’m about to try intermittent dosing of an antidepressant to see if it might help me manage the one two unpredictable days a month my head caves in. I don’t have a lot of treatment options left to try.

There’s a strange path I’m finding myself walking. Sadness, grief, loneliness all need to be heard and made space for. Given voice and listened to deeply. And the mind and heart also needs tending to ease them. It’s not a desperate fight against depression. It’s being open to it and the messages of it. Accepting and attentive and compassionate. While also working to be restored. The duality is strange. Burdened by a culture that sets us up to fight with our own mind and tries to numb our alarm systems instead of meeting needs and down regulating over sensitive alarms, I’ve swung far in the other direction of accepting whatever comes. Blown about on the tides. Actively working to change my state of mind or feelings is, in a way, as odd to me as most people find accepting and listening to them to be.

I have been lonely and sad at times lately. Two of my close friends are struggling with severe suicidal feelings. I miss spending more time with them. Did you know loneliness makes you much more susceptible to catching sicknesses? I’m reaching out when I can, being part of things. Glad for many good folks around me. Rose is, when she’s well enough, taking good care of me. We’ve been doing a lot of work to listen and empathise and reconnect and we’re feeling so much closer.

I’ve taken on temporary admin role in a beautiful online friendship group in crisis. I love groups and I’ve missed my groups lately. I’m hoping I can help restore some safety and sense of belonging.

I need some Narnia time out in the wilds, feeling the universe as a poem. I need my hands in earth, my feet in the woods. I need meaningful work and hope. I have a few more weeks before uni starts up again. I got a Distinction (84) in Epidemiology (honours level) so I’m feeling good about that, but I may drop a class to ease the stress if the health challenges continue. There’s a future there for me.

I’ve been struggling under the burden of several complex and sensitive old abuse issues for folks I love that I can’t speak about. A few recent days I’ve allocated to work or a Poppy adventure day, I’ve found myself spending most of it crying and calling helplines instead. I feel overwhelmed by the responsibility of navigating these relationships and conversations safely, compassionately, and fairly. Hopefully I’ll find a new support person soon.

In the meantime, in between sickness and sadness I watch the sun through the leaves. I touch Rose’s fingers, how soft and beautiful they are. I comb Poppy’s silky hair, listen to her stories, keep house.

And it’s the other way around too.

In between the most beautiful and tender life I suffer painful moments of sickness and sadness.

They weave in and out of one another. I’m here, hurting, and bursting with love. Holding it all to my heart.

At the HealtheVoices Conference

/ Sarah K Reece / 3 Comments

The flight was beautiful, I journalled and watched the clouds. I’m resting, soaking it in.

I’ve been to the Museum of Modern Art and wept on the floor at Hoda Afshar’s 2018 exhibit Remain, about the experiences of refugees on Manus Island. It’s stunning, and as much as I love public health and all the many things I do, it makes me deeply glad to be an artist and to want to stretch myself further, build my work in these spaces of such vulnerability. This is our history, being preserved here, the forbidden stories being told. Art can do that and I’m so in love with it.

Walked in the sunshine with new friends.

Washed the day from me, and slept.

Put on a beautiful dress I’ve never had the chance to wear, (non binary, gender queer people can wear dresses too if they want to) and shared a fancy dinner.

It’s a delight to be here. The alienation I’ve so often felt – in galleries, hotels, places inhabited by people with wealth, isn’t so present today. This is not my world, but I don’t feel at war with myself being here. It’s okay to visit. There’s no rage or burning anguish. I’m able to take in the pleasures and enjoy the luxuries. I’m curious and listening. Other people’s stories and experiences are always so interesting, the overlaps and the gulfs between us such rich food to share.

I keep thinking of the Pt Lincoln conference where I slept in my van in the national park because the bare hotel room stressed me. How hard it was to be there, how excited and exhausted and far beyond my own limits I was. The beginning of my breakdown, falling into the void. Months of anguish to come.

I can stand in galleries now and I’m not in burning pain. I can sleep in the hotel and enjoy the smell of the hand soap. I can walk into and out of this world without losing myself. I’m not numb and I’ve not gone native. I’m just no longer responsible for everything that’s wrong with the world.

I cried a little during a video call home with Rose and Poppy. It’s my first night away from her since she was born, and alone in my room is very alone indeed. I can hear the building air conditioning, and the gentle rumble of the lifts, but no people. I feel insulated like a single bee in a vast honeycomb. If I can’t sleep I might go sit downstairs in the bar to be near to people.

Next time I so want to see the National Art Gallery too.

Tomorrow I’ll be listening and presenting. I wish I’d brought my loom work project, I want to do something with my hands. There’s too many people to talk to, I sit in the middle of it all and let it wash over me like a river. Some of it I can catch and touch and the rest will flow past.

It’s hard to sum up what I do, my advocacy work across many domains. I haven’t used the phrase ‘multiple’ yet, I will tomorrow. I feel tired. I remember being at a conference 8 years ago and discovering 2 other multiples there, the joy I felt! Some people here have a very clear message, a very specific advocacy focus. I admire that. I think in some ways my work around adversity is that for me, but there’s other threads I’m still finding words for.

I miss my little girl.

I love this life. There’s so much joy in it. I’m glad to be here.

Disability and Employment

/ Sarah K Reece / Leave a comment

Some weeks ago, I was asked if it would be okay for Julia Gillard to quote me in a speech. I said yes, and she described me as ‘erudite and charismatic’ and quoted from my video with the SA Mental Health Commission about Mental health in the workplace, in this speech to the Diversity Council of Australia. Which is pretty awesome.

Julia is the Chair of the Board of Directors for Beyond Blue, and they were pretty keen on the message too. CEO Georgie Harman got in touch to share the video and invite me to speak on a panel at the Disability Employment Australia Conference #DEA2018. So today I trundled off to the Hilton to meet some new people.

There were some seriously awe inspiring folks there showing us what can be achieved with a disability. Which is inspiring and fantastic, if not intimidating. Conferences tend towards the shiny. So I did my thing and was vulnerable in public. I spoke about failure and shame. I told them I was possibly the least successful job hunter in the history of the world, and gave them a 5 minute run down on hundreds of job applications, rejections, sad experiences with DES providers, a microbusiness cert 3 for people with a disability where we were repeatedly told business is easy (spoiler alert, it’s not), NEIS, freelancing, jobs that evaporated after I applied, jobs that evaporated after I’d been successful at applying, training as a peer worker and still not being employed! It’s no bad thing to have someone speaking from failure. There’s so much you miss otherwise.

I was honest and passionate. It was hard. I thought TEDx was the most exposed I would ever feel in a talk but this was bizarre because it’s still something I’m wrestling with. It’s raw. Career has been my holy grail my whole life. I don’t come to a Disability Employment Service Provider for a job, I come for an identity! For a sense of purpose and meaning and connection. So I don’t have to be a bludger, a leaner, a long term unemployed, a hopeless case, a complex needs client, an underachiever, a dropout, a misfit, a failure anymore. I come because I don’t want to be poor for the rest of my life and I don’t want my children to be poor. I come because I’m so tired of pity and shame. I want to be a real person with a name tag and a business card and a place in the world.

So I talked about adversity and diversity and the complications of our lives where we don’t fit one box. Multiple intersections of difference and disadvantage, complex diagnosis, chronic pain, queer identity, homelessness.

We were asked how to motivate people to want to get help into work, and I said of course we want work – make it safer and make it more dignified. I talked about how essential work is but how risky too. Job hunting can put our financial safety nets at risk, can expose us to bullying and toxic workplace cultures, and can put more failure and rejection in front of us than our mental health can cope with. I also talked about how out of reach work can be during crisis, that often my personal definition of success is painfully simple – everyone I love is still alive at the end of the week.

I said that I’ve learned that I can’t successfully job search when I’m drowning in shame, terror, and rage. A bit like dating, I need to be okay with myself as I am. That means we all need to understand just because I don’t get paid, doesn’t mean I don’t work. People like me work a lot. We are often well suited to informal roles that fit around our disability. We run unpaid support groups on social media, we raise kids, volunteer at school, help out friends, care for family. We often create our lives in the gift economy, and transitioning to paid work is a very different culture. I shared how I’ve needed psychological support to help me see that having to make hard choices – like caring for a family member in crisis over finishing a degree, doesn’t mean I’ve failed.

I shared how many folks like me wind up freelancing so we can navigate our disability, and what a baptism of fire that is for many of us. I shared about the amazing Freelance Jungle and how essential that support has been to me. I talked about how changing my focus from what skills I want to use, over to what business model suits me best, fits around my limitations and causes the least stress has been far more helpful for me. Finding my own way of using skills that more closely mimics the informal work I do fits so much better than the rigid 9-5 model, or the huge, impossible to schedule projects that take years to finish and pay. It’s not about the skills, it’s about how the work is done and how well that fits. So I’ve moved away from project based work and back to gigs – short term, easy to schedule, and much less stressful for me. I mentioned that there’s a certain level of absurdity about funding an organisation to help me find work instead of just hiring me.

It was stressful, fun, exhilarating, exposing, and surreal. There were many interesting people to talk with, which I greatly enjoyed. My anxiety was pretty off the charts at times, but that’s the nature of that kind of personal work.

Georgie gave a fantastic talk about how we need to take care of our staff and our workforce too, to lead by example and prioritise mental health in the workplace. She was a strong advocate of the value and worth of people with lived experience. We both promoted the value of peer work in the disability employment context: that if you have never seen anyone do what you are trying to do, that is a very large gulf to bridge. People who share their experiences – the successes and failures – give us so much richness in figuring out our own paths.

So I hope I held a space for the human experience of disability and unemployment. There was a great deal of passion and sincerity from the people I spoke with. I was glad to be included.

 

Difficulty settings and disability

/ Sarah K Reece / 2 Comments
I have thought often lately, about the idea that some people seem to do life on a harder difficulty setting than others. I have been fiercely contemplating how I might be able to lower the setting in my own life. So far I have decided I am going to

  • Replace the jungle of mismatched containers in my kitchen with a set of no more than 4 sizes that stack with matching lids
  • Dig out most of the front garden, replace the shrubs with low maintenance succulents, and mulch it
  • Quit project based work and replace it with a smaller amount of gig based work
  • Meal plan for lunch and dinners
  • Have cooking days and freeze portions
  • Schedule all the chores
  • Create a nest space in the home for anyone coping with overwhelm – bed, laptop for movies, books, headphones, toys, blankets, Lego, and air conditioner
  • Limit Poppy’s access to toys and games, change the system to adults access on her behalf so not too many things can be spread across the home at any one time
  • Initiate a toy/activity rotation system
  • Limit the number of clothes Poppy has in each size

    • There are a range of significant disabilities in my home. It’s time we catered better for this.

    In other news, Rose is still in an awfully rough way but being discharged into my care on Monday. I’ve been instructed to simply ‘stop being her carer’ by mental health staff. When I’ve suggested she stay nearby instead of coming home where I have my hands full and a young child who shouldn’t be exposed to intense distress, I’ve been told by these staff that Rose is too unwell to be discharged to live alone, but not unwell enough for any other care option, and if I won’t take her they’ll send her to a shelter. Meaning I’m expected to care for her while being instructed not to care for her. I continue to value accruing my ‘lived experience’ in this sector. 🙄😒😠 {sarcasm font}

    Star has come down with bacterial tonsillitis and is incredibly miserable. And now Poppy has come down sick. I’ve spent most of day cleaning, meal planning, shopping, organising for Poppy’s birthday this weekend, and trying to keep my head together.

    It would be really nice if someone could unjam the difficulty setting from ‘hellish’ and move it back in the direction of ‘stroll in the park’. In the meantime I’m tremendously glad for generous friends, wonderful family, beautiful art buying customers, wonderful clients, and having a keen sense of the absurd. Because when you find yourself cleaning poop off a small plastic turtle after the least successful attempt to clean the toddler in a bath ever, you’re either going to burn down the house or laugh.

    Still choosing to laugh.

    Back into the Studio!

    / Sarah K Reece / 1 Comment

    I was well enough for a trip to the studio today! I’m still dealing with infection and asthma and on a stack of meds. I’ve never had an asthma episode this bad or this long before, it’s a bit scary. Going to the studio by myself – and driving again too, both felt strange and a bit worrying. I moved slowly, took precautions, and stayed in touch with Rose.

    But in the end it was wonderful. I bought more watercolour paper on the way, then spent the first couple of hours pottering. Sorting, tidying, cleaning. I went through the hundred or so pages of notes, tests, backup work, and proofs for my handmade magazine project Inside Voice, re read everything and sorted it into groups and two folders, one to put away, and the one containing everything I currently need. My mind is so much less cluttered now!

    Pottering is a delightful thing, it’s fun, it takes the pressure off, and as I do all those little jobs that get forgotten about when you’re busy and focused and under the pump, the space clears out, the lost tools get found again, the physical and mental clutter is calmed. All the papers are put together in a box, and labelled. I found several pairs of scissors and gave them a home, emptied two boxes of random things and cleared them off my floor, found all my notes and sketches for a handmade book that stalled and put them together in a folder, taped test strips into my journal and updated the index, started a new list of helpful things to bring to the studio, such as a small extension cord so I can sit at my desk and plug in my electric lap blanket on these cold nights. It’s slow, I rest often, I listen to music, and do whatever I feel like working on next.

    After a couple of hours of this, I feel settled. My anxiety has lowered, I feel at home and a sense of ownership and belonging has come over me. My breathing is raspy but not distressed.

    Then, I begin to paint and sew. The handmade book takes shape. Here is a sneak preview, neither the artwork not the poem are mine, they are both from prisoners (readers). I believe I have done them justice, so I’ve come home very happy. Hopefully I’ll keep getting better and get lots of studio time this week. ❤

    Bagpipes for lungs

    / Sarah K Reece / 1 Comment

    I’d like to be updating you on my my projects, but it’s just my health. I got half way to the studio today before having a huge asthma attack. I had to choose between going to the doctor, the hospital, or home for my inhaler, or pulling over and calling an ambulance. Not easy! I started to go to the doctor, then changed my mind and came home. I found I could breathe provided I did shallow breaths through my nose. Rose met me at the door with an inhaler and we got the next appointment with a GP. He’s changed my antibiotics to a different type and said the ongoing infection is triggering severe asthma. So I’m now on a stack of new meds and a nebuliser. It’s going to be a fun night of waking every 3 hours to dose me, Rose has her hands full with me and Poppy to look after, and there’s the constant vague worry of trying to decide when it’s time for hospital. My chest aches and when I breathe I sound like a kitten attacking a bagpipe.

    But, I’ve got a soft bed, Netflix, the cuddliest bug around, and hopefully I’ll be feeling better in a couple of days. Fingers crossed.

    I’m so glad I’d already recently decided I can’t pull off a primary income for my family (at the moment). This time last year Rose was in hospital with a chest infection. My family has a lot of extra needs. I simply can’t check out for as many hours a week as a primary income requires. But I can focus on income streams where I can shine even when unwell or on call as a carer. But what I can do is take the pressure off a bit, earn enough to keep my studio open, help with medical costs, afford my shrink. It’s not what I was hoping. But it’s a lot better than banging my head against a brick wall every week. At some point you just have to adapt! It hurts but it’s also taking a lot of pressure off me. I’ve sold four artworks this week, booked two face paint and glitter tattoo gigs, and things are going well despite coughing up a lung. I still have my art residency with SHINE SA and feel a great sense of belonging with that community. A career doesn’t have to be primary to count. It’s isolation that does so much of the harm. I was thinking of the years I’ve spent hanging around mental health organisations, and how it’s been within a sexual health organisation I’ve finally found a genuine understanding of diversity, and a sense of being valued. I’ve got art exhibitions planned and some in the works, and as soon as I’m better I’m going to finish and show you this beautiful handmade book I’ve been working on. I feel terrible but I still feel part of life and that’s so precious to me. ❤