Jay’s Breaking News!

We have 2 new people on board to help with my workload and both are on the ground in NSW and experienced with complex disabilities!

The changes to Jay’s NDIS plan that locked me and my staff out of being able to access it have not only been fixed, they’ve been made retroactive. That means the $10,000 or so I was going to owe in wages this weekend I can now invoice to the NDIS plan to cover. WHOOOOO

We have finally got high level medical support for Jay. Today we were called because they and one of the staff were exposed to a confirmed case of COVID-19 while in the local public hospital ED fighting hopelessly for help. That doctor tried to arrange for Jay to visit the same hospital for testing, given some of their symptoms could be COVID-19. When we explained the ambulances we’ve called refused to take them given they may have a neck or back fracture, they tried to get someone into the house. We all found it impossible to arrange for a swab to be done in the home because currently I’m more like to be able to arrange for a helicopter than I am for masks, gowns, and latex free gloves.

So he went off to speak to someone higher up and between them they saw what so many this past few weeks have failed to see: the bigger picture. COVID-19 is scary and potentially lethal for Jay and yet at present it is not even the most urgent medical need. We need proper holistic medical assessment, diagnosis, and treatment, and it’s not possible to get the tests we need such as scans done under sedation, in a home environment. Nor it is okay to focus on COVID-19 while they are at risk of death or paralysis if there’s a neck fracture, or death by drowning due to feeding in a prone position with a known severe swallowing issue.

Bizarrely enough, the COVID-19 exposure is the best thing that’s happened for Jay’s access to care. What the hell is wrong with our system that this is the case!?

We have a plan of attack, which we will swing into action tomorrow. For now, I’m going back to tackle all the admin that will make paying staff possible, and dealing with the remaining cash flow crisis – I owe thousands in wages. Tomorrow will be admission to hospital and me chasing up every loan option I have available.

We still need donations towards all the incidentals not covered by NDIS, but far less urgently than before. Mostly what I need right now is low or interest free loans so that I can resource staff to pay critical costs in their own lives while we are waiting on money to come in from the NDIS.

Gawds it’s SO GOOD to have a good update to pass on!

How to Stand with Jay

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!

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.