Navigating Hurdles to using Disability Support Workers

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

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.

Journalist seeking experiences of plurality/multiplicity

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

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

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

I am a journalist and registered psychologist.

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

I hope to use names in the story.

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

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

Best, Alana Rosenbaum

0412 806 475 alanarosenbaum@me.com

Research opportunity – the eating disorder voice

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

Phoebe writes:

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

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

How to be involved:

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

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

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

Plurality/DID sensitivity reader wanted

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

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

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

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

Mental Health Master Class

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

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

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

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

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

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

My intro to mental health talk

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

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

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

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

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

Baby has arrived

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

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

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

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

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

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

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

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

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

Birth trauma

I’ve come home from the dentist today feeling shattered. I’ve struggled with medical appointments since Poppy’s birth. I was not treated well during surgery and that left me furious and frozen in medical settings. I’m very overdue for dental care and have started the grueling process of attending appointments for 11 new fillings. It was miserable today, my saliva thickened and I gagged a lot with my neck extended to allow access to the inside of my top front teeth. It took nearly 2 hours and other teeth are still irritated and sensitive from the previous session.

I’ve never been able to write Poppy’s birth story. Now so many of the details are hazy. I’ve struggled to understand the impact on me and the contradictions in the experience. I’ve felt deeply unreasonably humiliated by my struggles. I know trauma, it’s one of my major areas. I had PTSD at 14. I’ve read the things and been to the therapy and run the workshops and supported others. Somehow instead of creating grace for myself, my experience drowned me in shame. I should be immune? I should be able to deal with this? I shouldn’t feel the way I do. I trekked through a number of birth trauma specialists I didn’t find helpful, froze and forced myself through dentists and pelvic exams hoping I would just adapt. Then turned away from the whole mess.

Lately going to prenatal appointments I’ve run into all these ghosts. Going for a scan and finding myself in the room where they confirmed Tam had died. There’s ghosts of me throughout the hospital, screaming soundlessly and running with dark hair matted and white gown flailing. A portrait of derangement and madness. I sit in appointments, incoherent with rage and painfully aware that I present as rude, distrustful, obnoxious. All my energy goes into not screaming, stuffing all the words back into my mouth, not shaking, not biting the hand that touches without permission, not raving at the language that is so devoid of the concept of consent. There’s nothing left for the smiling and eye contact and apologetic shrug and recruiting them to accommodate us in any tiny way. I’m so tired until I’m sitting there, then I’m so angry and so aware my anger instantly strips me of any credibility or power I might have had in this place. They think of trauma as the panic attack, the victim. I am on fire with fury, watching their every move and listening to every word and seeing ghosts of myself weeping and running through every corridor, abandoned and untended.

So we’ve put aside some money to spend on a good dentist, and today on catching an uber home again because I’m usually too ill to drive afterwards and couldn’t find a lift. She uses the anaesthetic that doesn’t work as well but I’m less allergic to. And she says things like “you’re in control, let me know anytime you need a break”. I lay very still and my tears roll down my temples into my hair.

I come home and Nightingale brings me mashed potato and pasta and sympathy. I’m going to hurt for weeks and it’s exhausting.

I’m talking to people about birth trauma and how stuck and silent and alone I’ve felt. I know better. I know shame isolates. I know hundreds and thousands of other people will have come through something similar. I know how to use art, writing, talking, and research to process things. I know that knowledge doesn’t protect you from experience. I know it’s not punishment. I know self compassion is crucial. And I know it’s difficult to do when no one in the medical environment sees the injury, or responds with compassion. It’s difficult when it makes you feel weak and vulnerable. It takes patience. And a dentist who’s had good trauma informed care training. I wanted to be doing that training by now. Frustration and roads untraveled.

I feel voiceless a great deal of the time about most of my life, in a way I can’t express well or articulate even to myself. There’s been so many changes and challenges to my ideas about my life, my relationships, who I am, what it means and what to expect. Trying to understand late in life diagnoses of autism and ADHD, what they are, what that means for me, my family, my children. The ending of an eight year relationship with the parent of my child. Beloved Star cut contact with all of us last year after joining a church. Getting married, a new baby. Work stabilising and becoming less overwhelming. The awareness in the back of my mind that I’ve been diagnosed with something that indicates I lack social awareness and the resulting severe loss of confidence to speak and own my own story. Lost about how to be authentic and work, navigate complex relationships, parent. I miss having a voice and a community. I put a call out yesterday for help to attend the dentist and got no reply. Covid has not been kind. There are empty gaps in my world and they hurt. There’s so many ghosts.

I have birth trauma. I’m trying to find my voice again. I’m trying to make sense of which stories I can share and how. Today I was brave. I’m hurting. I’m not alone. We’re all alone. It is what it is. I’d rather take the slower and more dignified route to knowledge, through study. But lived experience brings not just the silence and scars, when we wrestle with it, it comes with powerful inside knowledge. When we can speak we break the shame that binds us all. I didn’t think it would happen to me, but it did. I didn’t think I would get stuck, but I did. I couldn’t fix this one myself. But someone like me must have found a way to speak to a dentist and because of them I could get broken teeth fixed today. And tomorrow I’ll pay that forwards.

Mourning Luna

Drums in my head, beating against the thick wall of my skull. We’ve lost the pregnancy.

Waking Nightingale’s teen to tell them, sorry Squid, we’ve lost the baby. Where? they ask, sleep blurred and confused.

Walking into my studio for the first time in months to wrap my book ‘Mourning the Unborn’ for a customer overseas. Then weeping in bed instead of taking the package to the post office. What strange timing, I’ve not sold a copy in over a year.

We find someone safe for Poppy to play with. I buy a bouquet and we bring it back to bed. It is bright and colourful and has the painful cheer of hospital flowers next to the white sheets. We spend the first day alone and entwined, breathing in the loss.

And then, nothing. I try to get through the days.

I’ve lost my voice, my loves, for a long time now. The unbinding of my family, my terrible depression, the building of something new… I’ve been so silent throughout most of it. I rarely share online or even journal privately. I take few photos, write fewer poems. There’s been no art in my world at all in years.

All my life has felt unsharable. The stories have been beyond my ability to put into words. I don’t understand them. They defy telling. I cannot speak because I do not understand. I cannot explain.

My life has been tangled into other people’s lives. I fear hurting others. I cannot share my own experience now without impacting those who share or once shared my life. I never want my words to be a trap or a weapon. I don’t have the strength to manage what might come in with the tide. So I’m silent. Cut off and waiting for I don’t know what. Unsure if this is only for a time or this is just how I am now.

Nightingale is savaged by grief, while I am numb. There was no body in my body, there’s no blood on my thighs, no community to grieve with. I tell friends we lost the baby, who tell me to send their love to Nightingale. The child that was also mine, becomes in death not mine. The miscarriage becomes hers alone. I’m behind the glass, handing out hot water bottles, dedicated and soothing and far more afraid of the impact on her and I, of losing us than I am of the loss we’ve just suffered.

Behind the glass it’s almost like nothing happened, there was no child, no dream broken. The child was not mine. I remember well the black void of trying to conceive Poppy after losing Tam, and I grasp at the relief like a lifejacket. There’s no void here. There’s nothing to grieve. I’m not falling off the face of the planet. I’m a good parent, an attentive partner. I’m functioning.

I don’t talk about it, write about it, cry about it. I don’t want a body to hold or a talisman or a tattoo. I want to hold Poppy and never let go. I want to run from the burning pit where my grief is not clean and pure thwarted yearning, but something ugly and sharp, pierced through with raging fear and doubt. Maybe the baby didn’t come because I’m not a good enough parent. Maybe they’re better off without me. Fertility as the blessing of the divine, the endorsement of the universe of your capacity. All such bullshit and yet my heart labors under the fears.

I can’t help but turn my face from the anguish of possible later loss, stillbirth, a child dead at 4 months or 2 years. The demand that I can handle whatever tragedy might come and still be here for Poppy. It makes me terrified of my dreams because I know tragedy will come, that grief follows love like a shadow. When getting out of bed each day is a torture of pain and mental exhaustion and humiliating incapacity, I can’t afford to risk much more. So, the horrifying traitor thought: maybe it’s better this way.

This is how mothers say goodbye, little Luna. Face turned to the side in rejection of all that you were and represented. Eyes fixed firmly on the child remaining, heart broken by doubts and unworthiness. Numb to the bone.

The brutal mornings become unmoored from the source of the pain. I drive Poppy to school and then collapse sobbing in the car and can’t drive home for hours. Nothing means anything. My heart runs from you. If you weren’t real, there’s nothing to grieve. I build no shrine and hold no memory tight of who you could have been and the life we dreamed of together. You were almost never here, real as smoke or mist, dew gone in the first light of sun. I betray you.

Nightingale is alone and not alone in grief. The primal need of grief is to know it’s shared. I add to her anguish. In the night we are raw and wounded. I turn my face back to the loss, and reach for a key. We watch Losing Layla and I find you there Luna, in the face of the dead child. Grief, pierced through with doubt and shame. I howl in her arms. My functioning evaporates like dew.

We go wander the WOMAD festival, under the trees and the flags, arm in arm. The night is soothing. We get a henna tattoo each for the child, a Luna moth and a moon.

ID: A brown skinned hand with a moon henna design, next to a white skinned hand with a Luna moth henna design.

I buy and finally read Terry Pratchett’s final book, The Shepherd’s Crown. The mere thought of it has been unbearable for years. Now I read it through and I cannot feel anything. My eyes are dry.

I miss all my children, the ones who could not stay, or who left. Everything tangles into darkness. I am dumbstruck, spellbound, silent, paralyzed. I cannot be who I wish to be, who I am. I cannot find comfort in your name. I thought losing Luna would feel like losing Tam, but it turns out each loss is distinct and each grief is its own thing. Everything hurts, and I cannot feel anything at all.

This is what it is. I was once so blasted by sorrow that I couldn’t feel even the wind on my face or hear the trains in the night. My whole world was ash, and I was buried deep beneath it. I’ve come back from the dead before. My littlest love, you’ve pulled me into the underworld beside you. I’ll find a way to kiss your bitter mouth goodbye and live again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Being Disabled at Work

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

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

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

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

Positives:

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

Difficulties

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

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

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

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

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

Conclusions

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

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

Recommendations

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

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

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

Mental health in lockdown

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

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

Risk Assessments

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

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

Reduce risk of client to client transmission

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

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

Food challenges

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

Anxiety/Paranoia/Psychosis

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

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

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

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

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

Self harm

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

Confusion

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

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

Insomnia/hypersomnia

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

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

Depression

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

Addictions

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

Safety at Home

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

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

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

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

Be safe and best wishes.

Waking

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

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

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

I feel something

Other than dread, despair, terror, frozen.

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

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

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

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

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

Brains Trust – give me some referrals

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

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!

Dealing with Trauma during a Pandemic

Hey folks, I know many of us with trauma are having a rough time at the moment too. Some of us are not safe in our homes, are facing increased risk of harm from people close to us, or are struggling terribly with awful triggers such as feeling trapped, abandoned, and not having enough resources to survive. Shops don’t feel safe anymore, many of us are losing access to essential supports and are finding our brains are blowing up under the strain.

I’m very busy at the moment supporting my family and clients, but some of my beautiful contacts have been swiftly responding to create free resources for people.

A friend of mine, Jade, is running beautiful resources such as reading kids books online particularly for little’s and kids in multiple systems – check out her work here. Jade has been co-admin of the Dissociative Initiative facebook discussion group for many years, she’s incredibly thoughtful and compassionate. She wrote a huge blog and has published a range of stunning books on trauma, multiplicity, and recovery.

Another friend of mine, Raven, is part of a huge free online conference for survivors. It is accessible from anywhere, and takes place between 23rd-27th of March. Raven is well known for her amazing Puppetry (R)Evolution using creative techniques and hand made puppets to discuss issues such as child sexual exploitation. Her 25-minute video is about using creativity and activism in healing on the 26th March, and I’ve been assured it will include puppets. Here’s the schedule and list of speakers with their topics: http://walkingwithoutskin.com/rape-and-resilience-summit-speakers .

I’m hearing a huge surge in self harm, suicidality, eating disorders, and PTSD symptoms. Anxiety and depression are high, right when everyone around us is telling us to not panic and go out and do a lot of things. Executive function skills are in short supply and bad memories are looming large.

Some of us know that if there are shortages, we’re not on the list of people who will be prioritised. That alone is a kind of social shame and rejection that can send people down a dark spiral. It’s hard to put into words, but we all need to feel like our lives have meaning and purpose, that we’re not just here to consume, and that we’re not expendable.

If this is you, or someone you care about – hold on. If the old stories have kicked back in and death and self destruction feel like valid – or the only – reasonable response to such widespread terror and shortages, hold onto the knowledge that we need you. If the ‘broken people’ trauma narrative has you feeling that you’re not destined or worthy of survival, if the idea of taking up essential resources that someone else might have to go without makes you want to run rather than fight for a place in the world, if it all feels too hard to hold on while the planet tips into darkness anyway…

I’m so sorry. I’m so sorry for what you are going through, and for the people who don’t understand. I’m so sorry that at the point where you want to stand up and shine brightest you’re falling apart. I know what it is to feel tuned to the agony of the world, to feel the death of every person, every creature, in your own skin like a million needles. I know what it is to be seduced by the idea of scapegoating yourself, that perhaps the world would be a better place without you in it. That perhaps someone more worthy would have a meal or medicine. That perhaps you could take with you all the darkness and anguish and dive over the edge of the world with it clutched to your heart and vomiting from your mouth and dripping down the inside of your legs and leave behind you a brighter and gentler dawn.

These stories are like parasites that eat us alive and turn our minds against ourselves. I say to you – what kind of world do we want? Because if you want a world that is a little kinder to the so-called broken people, we need you in it. If you want a world that is loving to those in pain, we need you to bear the pain and find the love. You cannot make any of it better or reduce the suffering even one mite by tearing another hole in the fabric of the universe on your way out of it. Stay here. Hold it with us. Mourn it with us. Love it, with us. Stay.

Pandemic Resources for supporting People at Risk

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.

Why do they do that? Understanding people's reactions to crisis

We’re in a pandemic and most of us at the moment are baffled and frustrated by each other’s responses. Most of us have heard about threat responses in terms of fight/flight, but many of the pandemic responses are actually about the step before that, what makes us register something as a threat in the first place.

There’s some pretty good data on this topic fortunately, and it can take some of the heat out of it to put people’s responses into a broader context. It’s not that people are being ‘difficult’, it’s that people have different capacities to identify threats and risk. Understanding that can be the difference between explosive frustration, and a compassionate and useful response. Whether you need to help your Mum understand why it’s important to stay at home with her sniffle, or a client make sense of increased hygiene issues for staff at the moment, or a policy maker , HR manager, or boss respond quickly and appropriately to the emerging crisis – it helps if you have some insight into why they are behaving the way they are.

Under-response

What crisis? Everyone is going mad. Panic merchants are the ones doing the harm. Everything is okay, really.

Statistically, about 70% of people will not recognise a crisis as a crisis. This is termed ‘normalcy bias’ and is a pretty well known cognitive bias or common thinking error for people. Normalcy bias simply means that the mind finds crisis hard to comprehend and tends to assume that things will stay the same as they’ve always been. The wiki entry on this is wonderful and has some great links to research and further information about disaster planning and so on.

For people in this state of mind, the crisis is people’s ‘overreaction’ and panic. They will fight this and resist efforts to recruit them into seeing there is a crisis because the panic is the ‘threat’ they are responding to. It’s an accident of thinking, that’s all. There’s a number of things in my experience, that make it more likely people won’t recognise a crisis such as:

  • Preoccupation with a different crisis – this often applies to highly vulnerable groups such as people experiencing homelessness, mental health crises, domestic violence, poverty and so on. They are already in crisis mode and focused on the next meal/not killing themselves/a safe place to sleep/appeasing a terrifying person in their life
  • No living memory of the crisis at hand. We get better at managing crises we’ve experienced before. We’re not even that good at recognising many of them the first time. Some things seem to be somewhat hard wired – fear of heights and spiders, for example. Others require memory and stories to help us recognise the danger – such as a swiftly emptying beach before the tidal wave hits. The living memory between severe pandemics can be easily lost.
  • Changing nature of the crisis can also slow our capacity to recognise and respond to it. Changing animal husbandry practices, travel patterns and global trade have also changed the nature of pandemics in ways we’re not familiar with. Some areas in the world have regular epidemics and are much more familiar with issues of biohazards. Others rarely deal with them are far slower to recognise them.
  • No emotional impact of the crisis warning signs. It’s primarily our emotional responses that allow us to shake things up from ‘life as always’ to ‘urgent new priority’. As much as we like to congratulate our own rationality and see people who under respond as irrational, in a way it’s the opposite. We’re scared enough that our emotions are able to hijack our plans for the week and insist – there’s a huge issue we need to address, forget everything else! If you want to learn more about this amazing process I suggest the fantastic book How we decide by Jonah Lehrer.
  • No training to deal with the crisis. People are generally better at recognising and responding to a crisis if they have trained for it. This is why we do disaster planning and train people in exiting planes, burning buildings, and so on. Basic level training gives us a slight edge. Really good training means actually doing the thing – getting people to swim out of submerged helicopters and so on. Muscle memory is reliable in crisis mode in a way that our rational brain and other forms of memory are not.

People who under-respond need to be bypassed where ever possible, and engaged with in ways that bring the reality close to home for them – not just statics but emotionally. The impact of ‘it won’t happen to me’ thinking can also be incredibly difficult to budge, so work with whatever seems to clicking best with them – facts and figures, appeals to emotion, proximity to the threat. These folks need education plus emotional impact. Sometimes are more able to act on other’s behalf than their own and will respond to protect a ‘vulnerable group’ provided they don’t have to face their own vulnerability. Humans have developed a lot of defenses against recognising our own mortality and don’t tend to appreciate having to pull them down.

The Freeze response

This is a threat response that can look similar to those who under-respond. The outcomes may look the same, but the mechanisms are the very different. These folks have identified that there’s a crisis, but have frozen in response to it. They are numbly going about their ordinary day, because they don’t have a new plan of action. They need a completely different response to the under-responders, because while they may appear the same they are in a vastly different space. These folks are in terror or massive dissociation. Emphasising the severity of the crisis will make this worse. These folks need emotional support and a clear plan of action. The education needed is about what to do next, and the emotional need is about hope. Hope is still present, and hope is preserved through action, not inaction.

Freeze is a common and at times extremely useful threat response – play dead until the predator leaves. As with all threat responses, there’s no single one that works in every situation. Freeze may well be a useful response for some people who are geographically very isolated. But for most of us, a plan will be far more useful, particularly as this plays out over weeks and months.

Over-response

Panic, hoarding, shutdown, terror, suicidality, eating disorders, self harm. Fight and flight. Threat responses are curious things, and some folks are registering the crisis but responding in ways that make themselves less rather than more safe. I can relate this, currently my ‘startle response’ is over the top, I jump out of my skin at unexpected sounds or touch. This is a part of my PTSD – I’ve literally been neurologically wired to expect and respond to a particular type of crisis – personal attack. A heightened startle response is helpful if I’m under some types of threat – it’s not so useful in a pandemic.

We’re all coming to the pandemic with our personal history of what threat looks like to us, what’s helped in the past for us (even if the type of threat is different) our cognitive distortions and bias, and our primitive threat responses that are largely outside of our conscious control and generally well geared for historical threats (attack, starvation etc) rather than modern ones.

Helping to contain the emotional responses through the ways that humans regulate such as social connection, grounding, mindfulness, prayer, self expression, and so on, literally calms the emotion centers of the brain so the rational mind can come back online and help to direct the crisis response to be more useful. This is why loneliness and isolation in quarantine are such huge concerns for people, because for many of us they cut us off from our connections and leave us in a state of chronic distress and hyper-arousal.

As long predicted, the new poverty is a technological one – those with internet connections and home devices are far more able to compensate for quarantine than those without. Helping people to access smart phones, laptops, and good internet or data plans will be as essential as food and medicine to help in the months ahead.

From Individual to Community Health

We have become used to thinking in terms of individual health in Australia and other developed countries. Epidemics and pandemics challenge this approach in a profound way that can be very uncomfortable for people.

Did you know, there have been over 1,300 epidemics in the world since 2011? (Epidemics are local to a region, pandemics are worldwide) Some places have been hit by these over and over. They are far more profoundly aware of the impact that lack of resources such as supplies and a robust public health system, community education, basic food and sanitation supplies, and a robust health workforce can have on everyone. Health is not and has never been just an individual behaviour or characteristic. We are healthy or sick, well resourced or vulnerable, together. When there are not enough resources, communities turn on themselves. This is the entire field of public health – how communities thrive or struggle.

Predators and vulchers

Already evident in the pandemic is a harsh fact of human existence, that we prey upon our own. Predators are out there doing harm in the form of scams, stealing, exploiting, and deceiving. Some are individuals who lack any other forms of resources. Some are vast organisations who are skilled at distracting people from their bloated consumption of common resources. Vulchers rarely directly attack their prey, but they will pick the bones of the wounded and vulnerable. They represent a significant additional health risk to manage. They are always present in any society, but much more so in conditions of scarcity and social breakdown. Civil war and food scarcity for example, often go hand in hand. Cultures that cannot provide for all members tend to self destruct and devour themselves.

Violence

Family violence rates are likely to vastly increase under the added pressures of the pandemic. Quarantine leaves people vulnerable to those they share their homes with in terrifying ways. Trauma bonding means people will hold strongly to those who are doing them horrible harm. It’s a huge social issue and it’s likely to get worse.

In the same way that school bullies and rapists are not all doing it for the same reasons and in the same ways, people who are violent to their families fall into basic categories of type. Some people are sadistic and enjoy torturing people around them. Some have profound control needs stemming from their own trauma. Some have impairements that make it difficult for them to understand the impact of their behaviour on the people around them. Some feel entitled to bend everyone else to their will. There’s a wide range of reasons people are violent, but the broad trends hold – less freedom to leave, and higher pressures are both recipes for disaster.

People’s who’s threat response is geared towards ‘fight’ are some of our greatest allies at the moment, tackling political inaction, industry collapse, and personal crises. But some are going home and attacking the people closest to them. Again our existing infrastructure already fails us – people trying to flee abuse are often faced with homelessness, poverty, cruelty, beuracracy, and additional abuse (same as children taken from their families). Under the additional strain of the pandemic the human cost is likely to be brutal.

False prophets

As people scramble to pivot in the new economy, false leaders will also emerge, many of them quite unaware of the harm they are about to do. People are already sharing health information that’s completely incorrect, advice that’s harmful, and resources that don’t work. As people are facing the overnight destruction of their existing business models, many are having to urgently reskill which means there’s a lot of folks branching out into areas with limited expertise and training. This is what happens when there’s totally inadequate community safeguards in the form of housing, welfare, and infrastructure. Desperation will create some of the most amazing innovations and wonderful resources. It will also create a whole stack of people who are way out of their knowledge areas.

So be careful of what you’re consuming at the moment. If the self care advice leaves you feeling ashamed and overwhelmed, ignore it. Most of it is slightly recycled rubbish and does more harm than good. If the resiliency articles make you feel vaguely superior to the people out there falling apart in the ER – they are utterly worthless to you. Resilience is largely about access to community resources, not your personal qualities. Think twice about what you’re consuming and where you place your trust.

Leaders and Healers

These folks are emerging too. A little talked about threat response is the tend-and befriend. It creates connection and cohesion during times of crisis. Strangers help each other, friends form deeper bonds, families put aside quarrels and pitch in. We are seeing magnificent online movements such as The Kindness Pandemic, and the local supports on Facebook through the #loveyourneighbour groups. People with expertise in disaster response, crisis communication, epidemiology, social cohesion, community resilience, trauma responses, mental health, digital communication, business models, public health, disability, diversity, inclusion, homesteading, freelancing, and managing unpredictable circumstances are all in the spotlight as folks who’s wisdom and experience is urgently needed. While some people are in panic or shutdown, others are emerging, sharing resources, making sense of the complex health instructions, translating things for their communities, and helping people to respond. They are like lighthouses. Look for them, they are always present and they shine brightest when things are dark. Often they’ve been doing these things all along, and suddenly we have a new clarity and can see more clearly the value of what they do.

Overfunctioning/underfunctioning

Right now most of these helpful folks are scrambling and under pressure. Where some people have had their work wiped out overnight, others of us are working until 3am – whether that’s in the ER or our home study, trying to close the horrifying gaps out there that will translate into suffering, loss, and death.

Some of us are scrambling to start new businesses, find new jobs, cover essential bills, refill the pantry, get life saving scripts, and deal with what’s coming. Some of us are falling apart. Harriet Lerner would frame this as over-functioning and under-functioning. In her books The Dance of Anger, and The Dance of Intimacy, she explored how these opposing but complimentary roles become common traps for people. Overfunctioners tend to cope with life by doing things. They swing into action, organise, plan, offer advice, and get in there to make things happen. They are productive but also problematic – all this activity is driven by avoidance of their own vulnerability. They (Ha! Who are we kidding!) We do, so we don’t have to feel. This means some of what we do is helpful (organising a swift hospital response, for example), and some of it is extremely unhelpful (responding to personal crises for example – have you just tried overfunctioning??). Worse, we trap people around us into underfunctioning by taking over things they are capable of doing.

Underfunctioners tend to shut down or get overwhelmed. They drop the ball, signal for help, and zone out. Over and underfunctioners often think the other can solve their problem, but they tend to mutually reinforce the roles for each other and actually make them worse over time. The issue is largely about vulnerability and responsibility. There’s a great little run down here in the Guardian. Underfunctioners have a fabulous capacity to ask for help. Overfunctioners have a fabulous capacity to ignore their needs and take on responsibilities. We may even take on both roles – one in one relationship and context, and the other in a different one.

We all have both a capable and vulnerable self. In crisis most of us are showing much more of one of those than the other. The overfunctioners need the courage and permission to stop and get in touch with their vulnerable selves. Schedule in some time to panic, cry, feel lost, afraid, confused. The underfunctioners need to be cued to bring their capable selves back online. Ask them for help with something they have expertise in – looking after the kids, making a meal, helping a neighbour. Don’t reinforce their vulnerability by taking over, especially not as a way to vent your frustrations and avoid your own feelings. Give them space and opportunities to be part of the solutions, not the problem.

You can do it

Empathy doesn’t mean agreement, but it does mean getting close enough to each other to resonate. We don’t need to fling mud and shame, there’s a context and reasons behind all the ways people are responding to the pandemic, and any other crisis for that matter.

You may be frustrated, baffled, overwhelmed, or simply tired of everything, but you are still part of the human equation and you’re still responsible for what you put out into the world, and what you consume. We each bring our own gifts to this challenging time. Soothe your kids, plant your garden, tend your neighbours, plan your safety responses, do what you do best, and have grace for those who are showcasing all the ways our minds can mess us up and make us fall on our faces in a difficult time. Matching our skills to the challenges we find ourselves in is largely a matter of luck. The next time it could be you. We build a better and safer world for all of us, or we keep fighting over tiny pieces of it, that’s really the heart of it. A stronger community is a healthier one.

For those interested in learning more about pandemics, or where I got the stats from for this article, this is a fabulous easy to read resource from the World Health Organisation: Managing Epidemics, key facts about major deadly diseases.

Support your community through Coronavirus

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

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. 

Safety and Diversity: Better Together conference

Day three of Better Together caucus and conference. This is my favorite sign here.

ID sign outside toilets, by The Equality Project. Text in black and purple reads Gender Neutral Toilet:

Sometimes because of how people look, they aren’t allowed to use the toilet. We can do better.

Real Impacts: There are real impacts when toilets are labeled for women or men only.

Trans and Gender non- conforming people often face discrimination, harassment, arrest, or violence in toilets!

Everyone should get to do their makeup, change their clothes, change their babies, and use the toilet failures in peace.

Everyone who needs help should be able to use the facilities with their family members, friends, or guardians.

It’s important that we proactively work to create safer spaces whenever and wherever we can. We realise sharing a toilet could feel new and different, we appreciate your understanding.

The Equality Project
ID short haired person in a car, wearing a fluffy violet coat and teal lipstick, looking out the passenger window.

What it is to be different, to not fit the boxes and structures and assumptions of the world around you. I’m here to learn more, to better represent and include the types of queerness and diversity I know less or knew nothing about. To question my own assumptions and challenge my own internalized and unquestioned perspectives and norms and phobias.

What does best practice look like in inclusion work, in policy, in community engagement? Who can I learn from, ally with, and share my knowledge with? What are the range of differences, and how do they intersect with other communities?

It’s been my first queer conference. I’ve loved being here and met many wonderful folks. I’ve also found myself overloaded at times by noise, pain, fatigue, crowds. Having to be patient with my own limitations and let go of my desire to soak up all the knowledge, speak to everyone, justify my time here. Learning is a life long process. Community grows like a relationship, it cannot be forced or snatched.

Whoever I’m sitting next to knows something I can benefit from if they want to connect and share. I don’t need to chase anyone but to do what I need to be present.

Holding a space for my own sense of discomfort, the way I do and do not feel part of this community, my risk of self exclusion, the deep heartbreak of being a multiple in stealth mode, wishing we had this too, conferences and resources and pride. (we do, we are starting to, but that’s a post for another time)Listening to people glowing with a sense of belonging and remembering what it was to stand in Bridges and hear those feelings from other multiples.

What is it about conferences that makes me want to cry? That deep old wound of exclusion and rejection aches, fills up with tidal tear water and I’m a child again. Lost and terrified at school, trapped between anguished invisibility and agonized exposure. Loneliness that burned like fire. We were all that child, we all carry that child. Remembering another Sarah, at another conference, who first taught me this.

Someone walks up behind me and rubs my arm with affectionate welcome, our minds react on all levels, understanding it is prosocial touch, intended to bridge and create safety, wanting to touch back, needing to run, the screaming that starts beneath my skin. Keep breathing, loves.

Accepting that the path that’s open before me right now is about other more validated understandings of diversity. That it’s not a betrayal of my community to focus on the doors that are open and the opportunities that are sustainable. That this is my community too, that all identity is multifaceted and complex. That I do not owe suffering to the world. That mutuality is an essential aspect of community. That it’s okay to belong, to belong to more than one space, to hold membership across many communities, imperfectly and with gratitude and pain. To recognise the universality of these tensions and extend a hand to each other, the autistic folks struggling with the quiet space that’s not quiet, the folks in wheelchairs trying to get through the crowds to the lift, the young person standing awkwardly on the edge of the room.

Rose messages from far away and the memories of being on fire calm beneath her hand, go back to sleep. I write notes, share jokes, make space. Share meals, make connections, not – god forbid “networking”, but relationship. Nod through a talk, catch an eye and smile, hold someone’s hand when they cry, accept a hot drink with gratitude.

The wounded child in me begins to see the wounded child in everyone and the sense of being alone and on fire in the middle of the crowd passes like a breath. We all walk with ghosts too complex to put into words and in the end this is the essence of diversity, the fragmenting of experience into smaller and smaller categories until we stand alone, and the rebuilding into larger and larger overlapping groups and venn diagrams until we are all together under the umbrella of human. It is an oroborous of forming and breaking down and reforming, like a life cycle that honors both our difference and our commonality. Both need room to breathe and support each other.

Where I’m going in 2020

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.

Beyond dogma and empathy failure: the power of listening to understand

I’ve been enjoying and slightly overwhelmed by my new Public Health class: Global and Environmental Health Issues in equal measure. I was surprised by the info on systems thinking, which makes complete sense when you’re thinking in terms of ecology, I just hadn’t expected to encounter it and I’m very pleased to learn more about it. My favourite quote so far has been from the Global Health Ethics video by Greg Martin:

If you want me to take your argument seriously, you need to show me that you can argue the counter-factual. If you can’t, then it’s likely that you’ve taken an unthinking, dogmatic position based on some sort of knee jerk philosophical reaction that you had, and you really need to take a closer look at the other side of the argument.

Greg Martin

This made me extremely happy to hear because I’m often frustrated with people’s unwillingness or incapacity to consider opinions they disagree with (even when I disagree with those opinions too). I’m especially concerned at the way this is at times used as a kind of badge of honor that the wrong ideas are so wrong and illogical and irrational they can’t be even comprehended by sane and sensible people like us. Our failures of empathy and imagination are not a merit, nor are they proof against being wrong! Many opinions that are awfully wrong have excellent merit from particular perspectives. Moreover being able to deeply empathise and understand other perspectives is a crucial step to being able to engage them.

Understanding the building blocks of ideas and beliefs – the experiences people are extrapolating from, the accepted wisdom of the experts they trust, and why they are trusted, the logical fallacies we are all so vulnerable to, and often the ideas start to become less incomprehensible and outrageous. Your own ideas are formed in exactly the same ways, which is worth keeping in mind. We are all highly fallible, and we all extrapolate from personal experience and are vulnerable to bias. It’s not unusual, it’s the human condition, however diverse the result. We all share similar processes in how we develop and defend our beliefs, even astonishingly unlikely or dangerously untrue ones that may be experienced in psychosis. The mechanisms and interplay of knowledge, experience, and emotion are surprisingly standard. We have more in common than we think, which can be an uncomfortable thought. It’s far easier to remain baffled by opinions you hate and the people who hold them than it is to acknowledge common ground and genuinely ask “why do they believe that?” – whether we’re taking about someone with opposite political beliefs or “crazy” paranoia. The unsettling reality isn’t how diverse we are, it’s how similar the underlying mechanisms of our beliefs are. We build our ‘sanity’ with the same blocks that also build ‘craziness’ and ‘wrongness’.

The heart of being able to listen and learn like this is a concept I think is best summed up by the phrase “Listening to Understand”. It’s an empathetic stance, but that doesn’t mean it’s mindless – to the contrary the more complex or different the ideas, the more you’ll need to be able to think carefully to reconstruct the framework you’re hearing. It’s not listening to find differences to debate, or even common ground to connect with. It aims to leave unchanged whatever is presented, but to simply and deeply comprehend it and be able to articulate it.

This type of listening is a profound tool to have in your communication kit. It’s an essential aspect of community engagement, research, interviews, and relationship. In formal settings it’s often needed to be able to translate and transport opinions into other spaces, such as understanding why people believe and behave the way they do when you’re trying to design a health intervention, training, or policy. Failures of empathy are behind many failed efforts in governance. When we do not truly understand an issue our best intended efforts are often half effective at best, and may be horribly harmful instead.

In teaching, this empathetic engagement is crucial to bridge the gaps between what people know now and what are trying to teach. Education is far more than imparting information, it is often about a process of shifting frameworks and belief systems. Long after the facts have faded the mindsets and beliefs remain. Poor quality education neither knows nor cares what the current knowledge and beliefs are, it simply imposes over the top. This is why so much cultural awareness training fails, it is underfunded, too brief, and places heavy burdens of understanding bigotry and the ignorance of privilege onto those who suffer the worst consequences of it. It is experienced by those forced to sit through it as a set of new behavior rules and rejected as “PC” thought policing because there so little time and capacity to empathically bridge what the beliefs are now, with the ones you are hoping to instill.

In informal settings it’s about having a more informed perspective on the people around us. We all make assumptions constantly about what’s going on inside each other, what we really think and feel and why we do what we do. We have to do this in order to predict each other and function socially. Far too often when it comes to divides of belief we defend our own perspectives by staying willfully unaware of what and why others think as they do. This failure of empathy means we often set up strawmen not as a deliberate strategy but simply because we’ve failed to grasp the real position of the other person.

This approach of listening to understand is tough in everyday life when we’re trying to have relationships with people who have vastly different and at times flat out incorrect ideas. It takes a special capacity to listen closely and be willing to be unsettled by the internal logic of others’ ideas to begin to understand why people think, feel, believe, and behave the ways they do. It’s also very humanizing and can connect us across divides. It can also unmask narcissism and predatory behaviour that hides in the imitation of caring words but is revealed by patterns of behaviour where people are harmed and discarded.

Being able to listen this way to people very close to us creates opportunities to be seen and heard and validated. It bypasses the trap of ‘who is right’ and moves instead into wanting to get inside the other’s perspective and really understand it. It shows how limited our internal models of each really are, however well we feel we know someone, the real person is always more nuanced and complex. There’s always things we don’t know, influences we hadn’t considered, conclusions we weren’t aware of. Particularly in long term relationships, we often feel secure that we really ‘know’ each other, and more and more we relate to (and argue with) the version of them that lives in our mind. This erodes connection. Being willing to suspend that certainty and deeply listen can profoundly change the context of your relationship.

Empathy is essential to authenticity. It emerges through a range of capacities – being able to hold a range of contradictory beliefs in your mind at the same time, being able to hold your own perspective lightly enough to genuinely seek to understand another, and firmly enough to integrate new knowledge and experiences without losing your own. Polyphony – the willingness to allow multiple voices and perspectives to exist without requiring consensus, is profoundly helpful. Every experience and conversation we have is adding to our own frameworks and beliefs in ways we are often not aware of. The heart of the work for me isn’t just this willingness to accept I may be wrong, and a lack of fear of exploring other beliefs, it’s also about being able to bridge a fundamental tension in how I see other people. There is both a profound diversity, and an underlying common ground to being human. Empathy emerges when we hold these in tension with compassion.

Complexity is one of the hidden faces of Authenticity and Diversity – it deserves defending

Complexity is very difficult for human brains, and we don’t much like it. We much prefer single cause-effect thinking and ‘this or this’ options to systemic thinking and ‘this and this’ options. Hence the vast quantity of memes and concepts widely shared, largely contradictory, and all intended to help guide our attitudes and behaviours in conditions of uncertainty. Complexity is confusing and stressful. We need the memes, the simple concepts, the straightforward protocols. They are the shortcuts that help guide us, over simplifications that function as maps to make it possible to navigate without overwhelm.

The shortfalls of over simplified ideas are all around us – they are like blunt tools misapplied to delicate situations. You should be a decent friend and stick by people through thick and thin but also weed out obnoxious and negative people from your life. Somewhere in the middle lies the messy complexity of real life, real relationships, and your own level of obnoxious and negative impact on the people around you. Over simplifications occur when we are overwhelmed by complexity and retreat to safe platitudes or rigid guidelines, or when we fail to engage with the topic or people with sufficient depth or empathy to understand it.

The New Zealand study has come to be what I term a ‘‘research-has-shown’’ moment in the public discourse, where the results of one study are overextended to reach an unwarranted conclusion.

Steven M Schnell

The risks of this ‘research has shown’ approach are huge. It is a soothing idea and one that is often used in training – I’ve used it myself when talking about diversity in the workplace and myth busting ‘common wisdom’. But it’s so easily a tool that misrepresents complexity and reduces it to something over simplified and destructive.

Complexity has many shortfalls too, too much of it too often leads to decision fatigue, decision paralysis, confusion, shame, and hopelessness. If we can’t find guiding principles in difficult situations we are at risk of collapse or disengaging. This is incredibly important when the complexities are social, and a common dilemma for anyone working or designing interventions in the community sphere. I know how exhausting it feels to pull all of the issues on to the table and try and really grasp the context of problems. It’s tempting to give up and return to ‘business as usual’ even if we know it has serious limitations. Complexity can be too much to deal with and break our spirit if we feel doomed to failure no matter our intentions.

Complexity is also magnificent. It is nuance, shades of grey, texture, authenticity. It is the realness so often missing from curated and risk adverse stories and services. It’s the stories that don’t fit, the diversity not captured by the ‘normal template’ on which our world is built. It’s why we are not cogs in a machine and not replaceable to each other. It is part of the astonishing depth, the contradictions, and the richness of our lives. It’s one of the reasons people love art, which refuses categorization.

All the quotes in this post come from this delightful article analysing the “local food” movement and backlash in my public health studies this week, Food miles, local eating, and community supported agriculture: putting local food in it’s place, by Steven M. Schnell. While it is a very interesting account of that topic, it is also a defense of complexity and the process of deeply understanding the nuance of topics and communities.

What is missing in many of these discussions is recognition of food system participants as fully rounded individuals, balancing many different, sometimes contradictory concerns, and making decisions about food within the complexities of the real world. Any attempts to understand what the idea of ‘‘local’’ means to consumers must not discard this complexity in favor of rhetorical,ideological, and quantifiable simplification.

Steven M Schnell

The approach I’ve found most helpful in my work and speaking is to give value to both complexity and simplification. When I illustrate my presentations and use a combination of text and image, that’s a deliberate choice to help to capture a complex idea or important topic in a way that fits easily into our brain – the meme. Each contains a ‘halo’ of the complex information it was embedded in, but where that knowledge is swiftly lost, the meme remains and holds a place for it. It’s like a process of loops – we dive into complexity, then surface into a place holder – a principle, premise, learning, or guideline that stands in place for it. They are the nutshell ‘key take away ideas’ that lose value on their own, but when presented with the complexity are retained in a way that represents much more complex shifts in mindset and belief than a questionnaire check box evaluation could assess. For example, much of my work in mental health speaking is about humanising the person in pain. It’s not always explicit but is embedded throughout the materials and part of the more subtle shift in how we feel about and engage such people. Mindset shifts are the trickiest but by far the most effective changes we can make, and making complexity safer to navigate is a crucial part of that.

I’ll finish with this lovely one-liner, so applicable in community and health which are often uncomfortable bedfellows with neoliberal ideas of individual responsibility and free markets.

Doctrinaire free traders, it seems, are all in favor of freedom, unless consumers are using that freedom to choose values other than low prices to guide their decisions.

Steven M Schnell