Mental health in lockdown

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

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

Risk Assessments

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

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

Reduce risk of client to client transmission

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

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

Food challenges

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

Anxiety/Paranoia/Psychosis

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

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

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

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

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

Self harm

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

Confusion

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

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

Insomnia/hypersomnia

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

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

Depression

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

Addictions

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

Safety at Home

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

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

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

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

Be safe and best wishes.

Losing Rose

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

Rose and I are no longer a couple.

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

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

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

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

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

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

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

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

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

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

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

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

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

Letting people help

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

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

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

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

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

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

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

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

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

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

Thankyou.

I’m hiring

Applications now closed for this round, thankyou.

Central to Northern Adelaide Disability Support Worker wanted

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

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

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

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

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

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

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

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

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

Arts Inspiration and Exchange

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

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

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

Introducing using an angled brush for watercolour

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

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

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

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

Join our IDAHOBIT webinar

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

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

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

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

The world as it is

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

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

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

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

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

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

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

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

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

Finding my way home

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

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

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

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

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

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

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

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

Alone but Alive

Still alive – the best news I wake every morning.

Still alone in the house.

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

This was their blog post recently:

Keep Going, by Jay

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

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

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


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

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

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

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

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

How to Stand with Jay

It’s my Birthday and other Wonderful News

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

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

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

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

I’m Autistic!

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

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

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

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

Rose has her own house!

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

We’re getting married!

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

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

I’m in horrible debt

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

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

Jay is still alive

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

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

Please #standwithjay

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

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

 

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

Too many dead and dying disabled and divergent people.

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

Rejection?

Broken hearts?

Weariness.

Some days we fight with everything we have

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

And tomorrow

Who knows what comes with dawn?

We wait

Watch

Witness

Love.

 

How to Stand with Jay

 

Magnolia Speaks

Jay is still alive today. Alone in the house and crying. We are all trying to comfort them online. But alone.

Magnolia* is Jay’s overseas partner. They have gone through hell and back watching this from far away, working on documents to send to doctors about what has happened and what is needed, talking to the staff about how to manage the food and caring and what plurality means and reminding people about pronouns and trying to keep Jay safe.

Magnolia offered to write something we could share and yesterday their words were hopeful. Then last night we were forced to abandon Jay in their home once again and the bitterness and fear is horrible. Here’s what they want to share:

Magnolia Speaks: 15/4/2020

I’ve been writing it over and over again in my head, trying to find a way to tell you what this is like. Trying to find a way to say this is hell but those words are so overused I don’t think you’ll understand.

The last post I wrote was hopeful, but it’s hard right now to find the hope. I didn’t know what we had could unravel so quickly, but here we are. Once again I am watching, an ocean away, while my love is left alone, no help, pain mounting and sickness spiraling out of control. We all keep going onto the discord channel, family giving comfort, workers giving their free unpaid time to gently ask them, can you drink, did you take your meds, are you okay?

It’s a stupid question ‘are you okay?’ but we keep asking it. If okay means safe and stable, they’re not okay. But every time they answer there’s the one little glimmer of hope: not dead yet. Not dead yet. Still here. Still here.
“I’ll find a way to stay alive,” they promised us. I’ve watched them stay alive against all odds for a long time, and I believe in them more than I believe in most anyone. But they can’t go on forever with nothing. Even Jay acknowledges that.

Despite despair, despite the mounting challenges, Jay’s family is still here and we’re not going anywhere. This team is still here, and they’re all fighting for the same thing — to hear Jay’s voice and give them power in a world that wants to take everything from them. When hope is too weak to hold us up, we will move forward with the power of anger, the pure fire of our determination.

Please, if you’re reading this, please don’t give up. Keep fighting with us. Let’s make a fuss too big for the broken governmental systems to ignore, too big for the hospitals to wash away with a PR campaign, too loud to be drowned out by bureaucracy and polite dismissals.

Jay will keep fighting to stay alive,
and us?
We’re fighting to make something
worth staying alive for.

Magnolia
a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.
Original artwork by Jay. Image description a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.

How to Stand with Jay

If you’re still reading, this is the one they wrote yesterday, when we had a plan and things looked hopeful again. We ride the waves of hope and despair, nothing stays static for long for Jay.

Magnolia Speaks: 14/4/2020

This last week, almost every time I woke up it was to my phone ringing. Check your messages. Please come help. What do I do, I don’t know what to do, what do I do? I can’t take this any more.

I’m not a professional. I’m just a disabled parent scrabbling to prevent yet another bout of homelessness. I have no medical training or background in care giving. And yet, somehow, I am one of the precious pins that is holding the fragile structure of Jay’s survival together.

I’ve been watching the system fail Jay for a long time, cursing the ocean between us and all the people who couldn’t find an ounce of compassion. Someone so funny, so persistently kind and gentle and patient, someone full to the brim with passion and fascination and ideas, and these agencies look and see…nothing. They don’t care enough to try to understand.
But we’re changing that.

There are two parallel stories happening here, and it’s hard to tell them both at once. Because one of the stories — one that needs told not just for Jay’s sake, but for the sake of thousands of people like them who are being neglected and left for dead — is a bleak one. It’s the story of people who are discarded by society for their differences, whose value is ignored and denied. That story is a cry for help, a warning, and a call to action.

But the other story, the one that is in my heart right now, is a story of hope. I fell in love with Jay a long time ago, and now I am finally watching other people see what I see. Not Jay the crisis or Jay the case, Jay the person. Jay the artist, Jay the dog trainer, Jay the inventor and explorer, in curiosity and silliness and devotion. Jay who remembers a silly typo from three years ago, who rescues a starving little cat from under their porch, who gets a dream and digs in and fights the world until they get it.

This is why I’m honored to wake up at 3 am and struggle through ten channels of chat logs to try and avert a crisis. Why every time I get a call I thank the people who called me to come. Maybe I’m not the best person for this job, and I know this is an uphill fight, but Jay is worth every second. And maybe, between us, we can make an uncaring world sit up and pay attention.

We can help them see how lucky we are
to have someone like Jay in the world.

Magnolia

Jay’s Own Words

It was going well. Then it went downhill. Then it all caught on fire again. I’m so tired and heartbroken. They are at huge risk again. I am at huge risk. My team is at huge risk. The NDIS changed the plan again and now we are not getting paid for our time from this point. They’ve expressly forbidden my team from returning to the house because Jay may have COVID, which means my team are not covered by any kind of insurance if they disobey. They have been forced to stand down. We tried to get Jay into hospital before the last worker finished the last shift, but the ambulance was full of latex and Jay started reacting. It’s just so impossible to keep things on track.

I’ve showered. My mouth has stopped swelling – that’s rather nice – turns out it was an allergic reaction after all. I’m kind of numb, which is think is good at the moment. Safer for me. Apparently I’m being accused of kidnapping Jay. And of endangering their life by trying to get them into hospital. And of endangering their life by trying to get them out of hospital. And of endangering their life by trying to support them at home. And we asked for COVID testing we were told we were stupid. And now we’re told we’re wrong for not taking them to hospital to get it. It’s day 9 post exposure and their only symptom of possible COVID is a sore throat. The blood in their catheter scares me a whole lot more. I have to sleep, I just have to. I have to sleep and hope.

I’m tired of talking for Jay. They are eloquent and amazing. They don’t need me to talk for them, they need the communication device that’s going to take a month to get here, and for people to start treating them with respect.

They wrote a blog post about this situation on their blog and I have permission to share it. Go and see their own words.

Different not less by Jay

How to Stand with Jay

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

Carrying Jay

I’m near collapse. If the hospitals weren’t full of COVID-19 I’d have asked for admission. My tongue has been swollen for days now, cracked in the middle and ulcerated along the edges. My body is in so much pain it’s not always possible to walk or even type. My saliva is thick and foamy despite frequent drinking and crystal clear urine. My hands cramp. My eyes are dry and hurt.

The cognitive losses are likewise showing. I move in and out of having such a profound stutter I can barely speak or cannot speak at all. It’s getting harder to tell the difference between me and Jay except this is a tiny taste of their vulnerability and exhaustion.

Jay’s team is under horrific strain. Today we learned they were exposed to a confirmed COVID-19 person in the public hospital ED last weekend. They have been working around the clock high intensity shifts. No one has any money left for taxis and basic supplies for themselves at work, much less their own rent, student fees, medical costs, and food.

We have an agency ready to step in this week for a range of shifts, but we need disposible gowns, latex free gloves, and masks. Can anyone help me source these for Outer Western Sydney urgently?

Jay is presently stable. They have had several health crises to manage over the past few days, and we have discovered the agonising imperfection of emergency health care systems not designed with people with disabilities in mind. They remain at home with staff, on antibiotics. They are still in 9/10 pain from what we assume is an untreated spasticity crisis, but may also be underlying trauma such as fractures or bruised bones from various falls and poor handling. Without access to proper sedated scans we cannot be confident in the medical clearance they were given, given the severity of the pain.

Jay remains determined to survive, devoted to their family, distressed by the impact on the local staff, and afraid that somehow, some of this is in some way their fault for being complex or difficult or… I don’t know exactly what. Not normal? For daring to reach out while in unimaginable suffering, and now witnessing the sharing of that suffering in a smaller way with the people who heard the call and have come to help.

My wonderful long time friend Nick Jones created this artwork and meme for me today. It’s helping to help me going.

Image description: artwork depicting space with planets, nebulae, and a tiny spaceship in the distance. White text overlay of a wrote from the Firefly series “When you can’t run anymore, you crawl, and when you can’t do that… well, yeah, you know the rest.” In the series the final line not mentioned here is “you find someone to carry you”.

It is not easy to be the eye of the storm and the epicentre of such anguish. They bear it with dignity and humor and vulnerability. I want to meet them so badly. The state lines are all closed, I cannot do a midnight race to be by their side. How often we have thought they are dying in the past week, and I’m trapped interstate in frustration and despair.

Indulging hopeless fantasies of last minute Bruce Willis style rescues, careening into the ed of a local private hospital with a suitcase stuffed with the deposit we’d need, Jay making jokes about my sanity, me swearing like a sailor, the team providing remote support yelling the directions for the hospital to me over my headset, or crouched on the back of my stolen accessible taxi ambulance, holding Jay in their wheelchair as I hurtle around corners.

In this fantasy the denouement is a place of white and sterile peace, nurses slipping past a room in soundless shoes, a quiet efficient, reassuring hum of paperwork and handover and obs. Jay lays in bed, sleeping deeply and peacefully. The hospital is everything everyone dreams it can be, a safe haven with deep and calm acceptance of all the differences that block access to care for Jay now – trans, disability, non-traditional relationships, neurodivergent…

In my imagination, Jay’s team of support workers are all in their homes, safely sleeping the deep peaceful ready of front line crisis staff who are finally off call. I’m sitting next to Jay, not too close, but close enough to be able to see if their sleep turns to nightmares, to offer a hand to soothe.

On the other side of the bed is their partner Avery, ragged and unwell looking but no longer in unbearable constant agony. He holds Jay’s hand and sleeps awkwardly between chair and bed, face pressed into Jay’s arm, hands clasped around their hand. Magnolia is on the phone,

People step into the early morning light of the room. It’s the special support coordinator, the hospital CEO, and a high ranking police officer. They smile at me wryly and don’t speak. The police officer has an autistic non verbal child, and has briefed the other two. They step to once side and nod at me the way people are very old friends sometimes do when they meet again across crowded spaces. I nod back, get up, and walk out of the door with a heavy tread. My injuries and exhaustion have been tended to, the crisis is over, I’m no longer needed.

I walk slowly out of the hospital and into the dawn light. The sky is luminous, like a white pearl. My family are waiting for me bedside a fountain at the entrance to the hospital. Poppy runs to meet me and I have strength enough to lift her and twirl her around she giggles in delight and buries her face into my neck.

Rose comes slowly forward and holds me, eyes searching mine for confirmation it’s finally over. She breathes a deep sigh of relief. We hold each other, cheek to cheek. Lacing her fingers in mine to head home together, I can feel the unyielding firmness of her engagement ring between my fingers.

In my mind’s eye the next dreams start taking shape. We are standing beneath trees in the winter, isolated by COVID but connected by technology and community and love. We’re both well, we’ve been paid and tended to our health. We say our vows and kiss beneath a rainy sky and the massive trees. My heart catches fire.

How to Stand with Jay

Jay is trapped in bed

We need urgent help

Image courtesy of Image by Николай Егошин from Pixabay
Image description: large house fiercely on fire in the night, guttered with the windows burned through

Context:

Updated list:

More details:

In Home Safety Issues:

  1. Raised by RN
  2. Raised by Support Worker
  3. Raised by Jay
  4. Verified by Occupational Therapist – pending

Current Status:

I need 2 staff 24/7 with Jay and there is nowhere in the present home for them to sleep, and no separate spaces for them to have downtime. Due to severe sensory issues they also need to be able eat away from Jay, as most food smells are highly distressing and many cause meltdown/shutdowns.

An occupational therapist visited yesterday morning for staff training with safe use of hoist. Could not proceed,  Jay was in too much pain and then went into meltdown due to overwhelm. OT has shut down use of hoist, shower chair, and commode because of the severe pain Jay is experiencing. Given we don’t know the cause of the pain, we are risking potential severe injury to them if we mobilize them with the hoist.

Jay spent the weekend in the local public hospital ED. We called an ambulance for them when their pain escalated into crisis with symptoms mimicing a heart attack. Jay has no ambulance cover – we have promised we will cover it with our donations fund. (THANKYOU ALL!) Edit – wow it turns out NSW has different rules around ambulances to SA and there will be no cost. Awesome! We really need to do something about that here where I live.

Jay was unable to get proper care or assessment in the ED despite everything their entire tried over the whole stay. And I mean EVERYTHING we tried – but that’s a story for another time.

His GP was booked for an urgent telehealth appt over 2 weeks ago but has never called. This is the GP who has not followed up on a highly vulnerable trans client who’s hormone shot is over a month overdue. Apparently this is pretty common for them – can’t even blame COVID19.

Trapped in bed

Trapped in bed at present without capacity to get into their wheelchair. Jay now needs 2 staff available 24/7 to enact pressure sore protocols (need to roll them every 4 hours and apply cream to skin) – we think – we can’t yet get anyone into the house to tell us! Jay’s skin has already thinned badly due to a long time trapped in bed while abandoned in their home – also a story for another time, but I can tell you it’s been a really bad year for Jay.

We urgently need a GP for a wide range of assessments and referrals related to chronic and severe neglect.

We also have immediate medical questions we are not qualified to answer and we need a GP or someone trained to guide us!

We need from a GP: Immediate:

  • We need covid tests for Jay and all staff. The ED Jay spent the weekend in was a hotspot for covid but refused to refer or administer tests or medically assess the support workers. This means we can’t take them into places where high risk residents are in lockdown. We need clearance to open housing options or to know housing options closed because we are now infected and risk killing the rest of the residents. 
  • We need medical assessment and advice of the risks of using the hoist to mobilize into the chair, vs feeding someone with severe dysphagia while lying down in bed. 
  • We need to assess, diagnose and treat the pain crisis or provide referrals to those who can.

We have managed to arrange:

  • 9 April disability specific physiotherapist for telehealth assessment.
  • 14th April we have booked trans friendly GP: should be able to provide script for hormone, we can then hire a nurse to administer. 

Jay reports a bad sore throat today and has been feeling constantly very hot then very cold for the last two days despite no fever on the thermometer. This lack of temperature regulation is very concerning given other health conditions. Jay reports severe neck and back pain, radiating down both arms, which is especially concerning because Jay is usually unable to feel pain even if it’s a really bad injury. We are all afraid something very bad is happening medically. We desperately need a disability GP with experience in spasticity – we are making calls and waiting to hear back. If you know anyone – please get in touch with us urgently, my phone is on 24/7.

How to Stand with Jay

Looking for NDIS support workers

I need a couple of new folks on my teams, one in the Western Sydney Parklands/Mount Druitt area, and another in the Northern Adelaide area. Both folks need people with integrity, disability and mental health experience, and who are taking the COVID-19 health and hygiene precautions super seriously.

Whether you are already working in the NDIS, run your own business, are new to the NDIS but experienced with disability and mental health, want to be subcontracted or employed, I’m pretty flexible. The model can be variable, it’s the person and capacity to learn that I’m focused on. Get in touch and lets see if you’re a good fit.

You will need to have or get a clearance for working with people with disability, full first aid training, medication handling training, and COVID-19 hygiene training (the last one is free and easy to arrange). Your own car is vastly preferred. Lived experience of disability, diversity, neurodiversity, and so on is preferred but not essential.

Dearest Rose

Who is she? This woman I fell in love with seven years ago? We play supporting roles in each other’s lives. We wound each other in ways no one else could, deep in each other’s heart. We live in the brightest hopes and most painful broken dreams of each other. We are each the sun to the garden of the other. She speaks and my ear is a basket gathering petals. She is the child in the night, sleeping under a roof of stars and never entirely comfortable in a house again. She is the cat purring by my chest, full of love. She is a kite that flies out beyond my grasp, never entirely mine. Never tamed or owned or fitting within one role or name or way of being in the world.

She adores me. Her devotion is terrifying. She wraps her life around me, her hopes and belief in the future. She’s tender and generous. She forgives.

She hurts me. I live in the shadows of her wounds, in the debris left by everything that shattered and starved when she was excommunicated from a world where there was enough food, love, safety, and hope.

We dream new dreams. This is the first challenge after loss. Without new dreams there is no life.

We grieve. We learn how to say goodbye, how to let go and hold on. How to let go over and over again in a thousand little ways, like prayers for the future to be worth living for.

We own the scars. We find pride in them, we hold them tightly. We find the world ended but we are still here. We live with our mistakes and we do better.

We reach into the gap between dreams and reality and we do the work that bridges it. The hard and glorious work of being liberated from the past. To expunge the shame and agony. To let the memories burn down from raging fires, to coals, at last to cool ash.

She blesses me with her kisses and her silences, her fingers restless tapping my skin like rain on a window pane or a broad leaved plant. She holds my heart. All my world has been planted in her chest, birthed through her love. She gave me my daughters. She remembers the trees for me. She is my love.

Speaking about vulnerability

Well. So while I was wrestling alligators, fighting off polar bears, and manhandling monster trucks… I tripped and fell hard in my driveway. I’ve broken my left arm and bruised and sprained a few other things. For someone who has been busy with NDIS work driving to people’s homes this has been pretty inconvenient.

ID: smiling person with short brown hair, snuggled on a white couch under a faun blanket. Their left arm is wrapped in a thick white bandage.

It did mean however, that I was unusually available for a short notice speaking opportunity today. One of the reasons my work crosses several areas is to help me stay afloat when encountering difficulties like this- I’m not much use as a gym buddy for one client right now, but I don’t need my left arm working to talk about diversity and vulnerability.

It’s a precious thing to be offered the floor in a space like that, an expression of trust and hope that you’ll help people find the words for what needs to be said. I’m home now, exhausted, pleased, strangely sad in that indefinable ‘post event’ way. I know the real work starts after I walk out the door, the challenge of holding safe spaces and integrating complexity.

I find myself so moved by our common ground, the similarities in our hopes and struggles to be human whether we are the most fortunate or most destitute. And how unaware we are of each other, but where the blindness of the poor makes little difference to the lives of the powerful, unawareness for the powerful builds the walls that exclude and create so much needless suffering. The burden of responsibility is so much higher, and our need for allies in those spaces is so great. I’m glad to play a small part in humanising people to each other. Our work in that space will never be finished, but I believe each moment counts.

At the end of the day

Curled into bed at the end of the day with my little girl in my arms smelling sweetly of honey soap. My garden is growing wild in the darkness outside, full of seeds thriving and vines twisting and the ghosts of birds long since bones. The fan rattles on, talking to itself. Cats come and go. My bone pen calls to me like rain far away at sea or over the mountains, unheard but felt in some strange sense we have no name for. My Studio is a ship far out at sea with the lights still burning. My little girl radiates the soft warmth of a banked fire, embers safely glowing within her chest.

My work is good. It satisfies me, immensely. A parched place within is soaking in the long steady rains of over 2 months constant work and much more booked in ahead. I’m turning down many opportunities and focusing on my areas of strength and passion. The NDIS support worker is complex, challenging, taxing, subtle, and deeply fulfilling. I feel of use in the world and with the help of my business mentor I am starting to shape my business into a sustainable and enjoyable model, with a balance of creative and intense emotional work. My life is incredibly full.

Rose is out at Amanda Palmer, it was by far her turn and she needed the opportunity, the inspiration, connection, and compassion I’m sure she’ll find there. We both went too see There Will be no Intermission for our anniversary and it was stunning. Such raw honesty, brutal intensity, deft humor, and compassion. Amanda delivered something incredibly dark and beautiful.

Rose, my beloved, continues to wrestle with her old demons. She’s walking a hard road at times with horrendous anxiety. But she’s also stepping into her own work and volunteering opportunities as well as being Poppy’s primary carer. We are all learning how to grow plants from seed together, and she tends a small veggie patch I organised her for Christmas. The roses are stunning in bloom, by far the most luminous is Jude, the rose she chose the weekend I proposed in what seems like a hundred years ago. Sometimes our path is painful but there’s also so much tenderness in it. I’m so grateful to her for the joy and spark she brings to Poppy and I, her joy in the little things, her creativity and sense of adventure. She is utterly ernest in all things and so devoted. I’m hoping she was able to open her heart a little tonight and soak in something precious. She so deserves all the safe, inspiring, dark, raw, and soulful nights in the world.

Helping bush businesses after the fires

The fabulous folks I volunteer with at the Freelance Jungle have stepped up in their own unique way after the horrifying bushfires here in Australia. They’ve put together a new projected called Skills for the Bush, where self employed people from anywhere in the world can register to donate their skills and time to support a bushfire affected small business to recover and grow.

Read more about the great project on the Freelance Jungle blog post Freelancers Helping with Bushfire Recovery, or sign up through the Skills for the Bush survey.

I know many of us are already donating and supporting causes. I also know that many of us feel helpless in the face of the sheer scale of the disaster and how long support efforts will be needed. Participating can be powerful way to reduce the impact of vicarious trauma, so whether you are driving supplies for fruit bats, buying quality face masks to donate to fire fighters, or getting involved with the Skills for the Bush project, doing something sustainable and connecting benefits everyone. ❤

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.

Darkness and brightness both

Taking my little love to the pool in the hot weather, she runs before me splendid and energetic while I shadow her, watching for danger. She is everything I ever hoped for.

Both girls home, baking in my kitchen. My heart bursts with joy.

Away on holidays with Nana, who is too sick to stay. The big plans get put aside again and yet I know, how deeply I know, the mundane things are sacred. She brushes Poppy’s hair, we play a child’s board game together on the floor. When health is lost these are the things you dream of, to have enough strength in your arms to brush their hair.

Some mornings I wake to the feel of death and the memories of those I’ve loved. If I can find way back into my dreams I often wake later to a different, kinder world. Sometimes I find myself reaching for a sense of meaning and falling instead into a dark void. Each time I must weave my own answer, and each day the answer needed is new. My life slips through my hands in fretful hours.

There’s been such pleasure in my studies. My mind enjoys complexity and challenge. The health of groups is a topic well suited to me. I’ve learned many things that have been questions for a long time. I’m always asking questions about the nature of the world, of reality, what it is to be human. My life can be measured in my pursuit of understanding, what had emerged and from which sources. I find myself curious that in some ways public health is so ignored. We consult psychologists about the health of crowds when they spend very little time studying this. When you want to know why individuals behave as they do, they are excellent. When you want to understand why entire groups behave in certain ways, public health is invaluable. It embraces complexity, exploring the causes and the causes of the causes. Social determinants emerge and I find research to support many private theories and wisdom from lived experience. It’s incredibly validating in many respects. It provides the context I’ve been craving.

I’ve gained confidence and learned gradually how to not write to excess, to do only what is required. My marks are very high and I feel a thrill of accomplishment. I’ve been exploring my next study plans for months and have not yet settled on a solution. Pleasure is one thing, but viable work another. I remain perplexed by the challenge of what I can meaningfully and profitably turn my hand to.

I still wish to pursue my questions, to build frameworks and explore knowledge. I adore learning and even more so in the company of other learners. I have theories about psychosis and multiplicity I wish to develop and share. I know there’s such a need for training and teaching that’s complex and authentic, so that calls me. I’m still seeking more understanding of wildness, art, Narnia, poetry, safety, and why some things make us feel alive while others numb us and break our hearts.

I’ve started working with a business mentor I have great respect for. Gradually I’m untangling some of the knots that have bound me – the need for my work to be somehow unique and spectacular, to build it quickly, to find confidence despite crushing experiences and limited qualifications, to not work alone, to work in ways and places that use my skills and skirt my limitations. To have others set my pay and value my skills because my self loathing forbids me to set myself above the lowest paid and punishes me for ambition or self interest. The fog slowly clears and I find some possibilities emerging. I cannot tell how long the path is that lies before me, and I’m often silenced by my awareness that showing behind the scenes of this area reduces confidence in my capacity, that when I pull aside the curtain to show my doubt and humanity I do so in the terribly shiny setting of consultants and entrepreneurs who sparkle with confidence. Authenticity and public sharing have costs and limits I struggle at times to navigate. And yet, so much of my credibility is based not on my book knowledge but on my capacity to articulate things I’ve directly experienced, and synthesizer it with wider knowledge. And that includes the darkness, the self hate, the terrible blocks that keep us from things we dearly love. I’m not alone in this struggle and neither are any of you. Struggling is part of being human.

In therapy I’m working on self compassion, an extraordinary challenge for someone deeply wedded to self loathing. I pick apart old journals and blog posts, looking for threads and connections. Somehow it’s connected to my struggles with paid work in ways I don’t yet understand. I’ve been trapped here a long time and my struggles, hopes, and self hate have not freed me. I’m trying to face it with calm acceptance and find compassion for this unreachable dream and my own compulsion to keep reaching even though I fall every time.

When I let go of paid work I feel free, and then my sense of self and meaning fray and I start to free fall into despair. When I strive to grasp paid work I become broken by my obsession, working intense hours in impossible circumstances and exploiting rather than nourishing myself. So the path forwards becomes not one thing or the other. A medley of intention and distraction, a part time world of parenting and art and study and paid work and therapy. It is extremely painful, utterly confusing, and thrillingly wonderful all mixed in together.

I don’t have those answers yet but I love and I am loved, and I’ve found good company for the journey. My heart is a tangle thorn and my hands are shredded but my mouth is bright with kisses and my books comfort me when the world goes dark.

Studio Opening Success

My Studio Opening was delightful. Thank you to everyone who came, brought gifts, sent messages of support, or signed up as a philanthropist, I feel very loved. It was a pleasure to share my space and I’m delighted to hear it was inspiring for others creative pursuits too. There’s something incredibly special to me about studios and behind the scenes peeks into the home and birthplace of art. One guest is even looking into renting a space themselves, and there’s several lovely Christmas gifts safely on their way to new homes. The weather was bizarre but the cookies were delicious and the company even better. 💙

Image description: non binary person with short spike brown hair and teal lips smiling at the camera in front of art sketches and photos pegged on a string.

I’m about to leave for a week, when I get back I’ll create a walk through video and share a few special embellished prints I’ve been working on recently. I’ll also send my first philanthropist only email and start my gift lottery for these wonderful supporters. You folks are the best and I’m excited by what’s possible with your help.

Embroidery sampler

It’s been a glorious day. I’ve handed in my final large assignment for my grad cert in public health. We’ve passed our rent inspection. I took the day off and went to the zoo with my family. It’s the first day in about 6 weeks I haven’t woken up feeling hideously anxious. I’m happy.

Image description: a needlework project in progress. A multicolored bird embroidered using a range of stitches onto cream cotton. On the right is a pouch of sewing tools and threads, above that is paper with a sketch of the bird and names of the various stitch styles.

I’ve taken up embroidery again because I find it helps when my mental health is rough, and I’ve been grabbing onto everything that helps. Darling Rose is dealing with a lot of trauma stuff, which means I am too. My doctor put me on an antidepressant to try and reduce my anxiety, the starting process of which has been absolutely brutal with severe side effects including ironically enough severe panic attacks where my body goes into shock and chills. They are finally starting to ease off which is such a relief. I’m starting to embrace my life balance of part time work, part time study, and part time looking after my family – along with play and rest and hobbies and friends. Getting out of my obsessive focus on work is very difficult but so rewarding.

I’m absolutely thrilled that I’ll be graduating. I now have so many further education doors open to me and I want to do all of them. I’m taking my time deciding.

My week still contains holding the fort after trauma therapy, preparing for a family holiday, my studio opening, and face painting. I feel so relieved and joyful after every goal we nail. At some point I’ll finally empty my inbox again and all will be well with the world. In theory.

Embroidery is something I initially took up when very ill. I’ve loved doing it again, the little bird is a sampler of useful stitches to use as a guide for other projects. There’s a major art series I’d love to do one day in embroidery so honing my skills will help with that. Right now it feels like I’ve been battered on rough seas for weeks and I’m finally resting blissfully on an island in the sun. Soaking it in.