Ruby slippers: gratitude and finding “me” in the pandemic.

The corona virus has slowed down so many things…the mail, my ability to buy the correct pasta sauce for the correct pasta, the good coffee shop closing up. It’s left me locked up with two defective felines of various levels of intelligence and has allowed me to indulge in not a single book of the ante-library, as I work out time zones for Zoom meetings and work out which emails I never have to answer and can procrastinate further than eternity on.

In short, I’ve become more introverted and less exhausted than I have been in years. The pandemic has stripped layers off me from therapy and recovery movements, the *correct* opinions to have to fit in with certain crowds and then what I actually think and limited my ability to take up new and more demanding positions.

For years, I was defined by my sheer audacity of will to graduate with an honours degree in anything and then a PhD. Now I’m mocking my own discipline’s media portrayal in conferences about sexy space archaeologists and can finally let the vampires back into my vocabulary just a little now I’m not terrifying psychologists with my descriptions of why I admire random ambush predators. My favourite still is the domestic cat, breed: ragdoll.

In the pause of society, the slow life of elsewhere in Glenelg, I’ve paused a lot. I always thought I knew myself well because I was so candid about my flaws and owning my deviant behaviour. I’m not sure how many of those were mine to start with though I’ll own “strangely literal and newly human” from Anyanka Christina Emanuella Jenkins as fitting me too.

But how much was “I find your energy too busy,” was a person not brave enough to find another room of people and instead to criticise me? How much of that busyness was mine to start with? I remember intensely disliking being compared to Bjork’s It’s Oh So Quiet. But long before that I’d really been letting a battle with the diagnostic establishment with what eventually was bipolar disorder and fibromyalgia go on. This is before I’d been painted in lived experience layers by mental illness, disability and lessons in compassion. That song still irritates me, along with Memories.

When I was 17, I had a friend called M. M was destined for great things and he knew, we knew it, the entire small city we lived knew it. He was a big deal. Order of Australia big deal, a talented actor who just didn’t fit the Home And Away mode of Australian drama and we hadn’t really produced anything adventurous since A Country Practice. He was big for a skinny geeky kid who played Michael Jackson in the rock eistefodde. But life isn’t fair and while he was over burdened with life, I was nihilism in muted colours. So it was terribly unfair when M was suddenly taken by an asthma attack before university; university drama was supposed to be his time, he would have thrived and travel overseas would have been the making of him.

Yet there I was, stabbing my feet with sewing needles so no one could tell I couldn’t face existence and here was M gone. I was pretty angry at the universe and the gods I held sacred at the time —it varied in the same day between new age polytheistic young lady destined for a minor in women’s studies to that time I joined a really obscure cult that taught me excellent Bible scholarship I still carry with me to this day and were a soft, kind place in a world that didn’t have too many compassionate safe places for a victim of the kind of bullying abuse I’d suffered. The universe had it very, very wrong, I went through bargaining and asked to the universe to trade our places like so many people have asked the universe. And like the cosmic balance, I was not able to swap out my place that I didn’t want and didn’t ask for, to that of acceptance.

I had accepted M was gone from where I could reach him or trade places, that I would have to fill his place. Suicide was no longer an option for me in ordinary circumstances and I would have to start speaking up. That was easy as I started at a senior college on a university and I made friends outside the high school click. I would have to be more daring, more clever, try all the things I could and let this adversity that his destiny and become mine but one thing I’d almost always admired about him is that he was brutally honest and I would too. I’ve been wearing a dead boy’s red shoes for a long time. But they no longer fit and the layers of paint peeling, away and home, is Adelaide.

I am an introvert with cats who enjoys the quiet and filling my mind with as much knowledge as possible as I was when I was a child and encyclopaedias and then libraries became my places of solace. Cats have always been the forbidden animal due to my father’s allergies and the best non-judgemental company I had needed to survive my teens and later twenties, though I’m pretty sure the neighbours think I’m weird when I ask them what they think on current affairs. Dee will voice an opinion and Issy will quietly study with me as I try something else new.

There are still the sharp hard edges of me that were honed in adversity, both a pen and sword, but a thing that drives me to seek the opportunity in a challenge. The negotiation in the answer no, but it makes me a difficult to like person. So my own wyrd took hold several years ago when with the desperation of nothing to lose and everything to gain by trying to be a better person, inspired by a FUSA campaign no less, than I decided to try and be someone I liked. The problem is the trying is negotiation and to use that terrible analogy you can be a little bit pregnant or not at all. There is really no middle ground for negotiation how much you like yourself, you do or you don’t.

Self narrative influences so much and without a commitment to liking myself and that liminal zone of “trying”, I took on vulgar values and habits that weren’t mine to begin with. Most of my faux pas and fuck-ups were due to the fact I was negotiating by doing what I thought would make other people like me. I had strange notions of friendship from school and having to be better than someone else to appease the hole in my heart was something I gained from toxic teenage boy masculinity dictating my likes and dislikes. (The distinction is that was not M’s glitter at all. He was ahead of his time).

The eclecticism of my music was actually a place of resistance that later served me well in the arts. I remember telling my mother recently about I had heard the word eclectic at 16 and thought “I should do that, it would upset my ex-boyfriend!” I’m not a neurotypical person and I’ve had some odd notions of revenge in the past and so much of the cultivated yuck was based around things I thought would offend yet the audience would never even know. All of it hideously manipulative and egotistical, traits I share with my niece that has taught me a lot about leadership and who I am underneath the weaponised words and obsession with evening the odds. I need more therapy on this one and more time studying the kind of person I want to be as I fail forward into leadership.

There is one thing I had gain from the fact that glitter rubs off on those that wear M’s shiny red shoes, I had gained a bravery to be someone else, somewhere else. University was the making of me. I had to the courage to finally admit I am a geek from before when geeks ruled the world and knowledge is my elixir of choice, that I liked literary books and obscure theory. I wrote a “Buffy thesis” in honours English in the kind of small country town I swore off as a teen before I’d been slippered red and put myself out there in a time that wasn’t terribly kind to the the survivors of mental illness and faced multiple disabilities with relief because I was alive. I have had the candidness to face my own misdeeds and try to learn from it all. I have a story to tell. It probably won’t make a lot of sense to start with but I think of it a lot like Sansa Stark’s hair in Game of Thrones, you can tell who is influencing her from the way she styles it and that last scene of the final episode as she is crowned Queen in the North, unadorned and out, says a lot about her identity. I’m learning to lead and be me in my entirety, but at the right size for me.

I’m finding my style now but only because I’m prepared to dislike my behaviour in the past and still love myself in the moment, the way Malcolm Gladwell does when investigating the both interesting and dreadful sides of human behaviour. I found me in a genuine curiosity to see how it all turned out and then found myself baked, like cookies, from wearing that dead boy’s shoes. I hope that when I die, I can hand them back, apologise for wearing them out and then thank him.

C.Santilli, The Lonely Archaeologist, 22/04/2020

Being a reluctant leader: embracing I’m really excellent at one thing and have to work at others.

I want to do it all. I have this terrible habit of overpromising and under-delivery, I see how much I’ve taken on, freeze or possibly put on a tiara. Then I jump on a ship, flee down the Nile and fail spectacularly. I tend to be overwhelmed and under resourced in time and energy, not so much lack of ability, for the projects I’d taken on. Then I watched a few online classes on being a great leader and one of the really important points raised by Marissa Peer is that a leader is usually the best at one, maybe two things only and while they don’t brag about it, they are also not afraid to own their abilities. Being candid does not help me and as Brené Brown said recently on 60 Minutes, there is a line between vulnerability and oversharing in leadership.

Chris Hadfield, the Canadian astronaut that got to command the ISS, said all leaders have a doubt at times of “How did I get to be doing this?” This question of “Why do they put trust in me?” really has become an anxiety that haunted me because I take that trust seriously and sacred. I’d describe myself as a “reluctant” or “accidental leader” but I’m not and being uncertain of my leadership hasn’t helped in many ways, it’s actually undermined perception in my abilities and competency. Marisa Peter has said good leaders do one or two things well, they don’t need to be polymaths. If cakes is their thing, they do cakes the best of anyone else…

I think I’m here because I realised that I am excellent at communicating in writing, public and networking around the arts. I am excellent at English and storytelling in particular because I worked at it. There was some natural ability and curiosity but I’ve done years of reading, writing and research around it, finalising an honours degree in English. However I’m a terrible archaeology student so one of the things I learned within my research in my English degree is that it’s perfectly reasonable to surround yourself with a network or team of experts who are much better than you at what they do. And then ask them for help or go to the source, ten minutes with the right expert can save you hours of pain in solving your essay question or assignment problem.

Leadership is defined by Chris Hadfield as influencing people to behave in a manner that solves a problem in the manner the leader desires. Leadership is something I’m a little bit good at because I’m the first to put their hand up and be brave enough to risk failure. That is necessary for any creative and innovative endeavour to go forth is the ability to say, “If this fails, let’s look at another solution.” But that’s only because I know that adversity isn’t a reason to stop but an opportunity to reassess and look at other problems solving methods.

To turn my failures into challenges and any conflict into a chance to look for alternate solutions, I have to have some standard operating procedures or a system I follow or it just is a chaotic situation with no problem solved at the end, nothing created or innovated on. For me in learning to influence people so both of us get the most of an interaction, I’m taking personal development classes to increase my negotiation skills, my emotional intelligence and my professionalism. I am developing these skills just like I am still doing with my writing, dance and music. Still out with the improvised poetry but I’ll hey get there one day!

The same thing can happen with neuroatypical behaviour too, you can study how to have good healthy relationships that can be both personal and professional. I haven’t been the easiest person to get on with in the past in either domain and something that struck me today was this meme that states you might be impressed with my growth but you can choose never to work with me again.

That just because I’m doing the work in therapy and other personal development avenues, now to grow, after a situation doesn’t mean I am necessarily going to be granted a second chance. We all know that first impressions count and reputation is the continuation of that impression in long form storytelling. You want it to be a good one in the words of the Eleventh Doctor.

My reputation is erratic and had several spectacularly public experiences I’ve admitted to and since networking really is creating a relationship in a way that asks favour of someone down the line and having reciprocated value in your dynamic with them, you need a good stable reputation if you want to network. You need to keep those people close and relationships healthy rather than something that belongs in a melodrama. Adelaide is a small city and I’m sure people have talked.

I am a work in progress and I have the ability to lead, but that expectation that people will forgive me for my mental illness and then see my growth throughout that corrective work is something I need to hope for, for forgiveness, but not feel entitled to it or even expect understanding from those I’ve reacted badly too. I’ve burned too many relationships this way as someone who feels threatened and hopefully I can use the pause and uncertainty of the COVID lockdown as a chance to reset myself to a more consistent human. I can hope people are feeling kind as I do my one thing well as representative of the mature age students this year at Flinders.

Clara Santilli, The Lonely Archaeologist, 19/04/2020

Living within your own wellspring of chaos and the consequences of unpredictability.

Whenever I get an idea or react to something.

I startle so easily perhaps right now is the best time I’ll ever be free of a reaction that saw me hit a (stationary) tram with the introduction of social distancing. I wish I was joking… But I’ve been thinking (in the seemingly disconnected way of many manic-depressives) about my behaviour under the influence of the illness and also my employment prospects as if they were being weighed along with my heart in Duat (the Egyptian Underworld because that’s what normal people watch documentaries on and connect to their future prospects). When my heart were weighed, would I come up good and be sent to the fields of plenty or would my heart be heavy and then be eaten by this hybrid nightmare goddess named Ammit, the Devourer of Souls?!

What in my heart is usually good and kind and hopeful — what happens with my head is entirely unpredictable and when I am rejected or I perceive a threat to myself socially, turns into a place I’d rather not be. Run is the advice I’d give a mind reader. I’ve tried to respond rather than react now I have had a suitably boring time to practice the management skill of pausing and breathing, but I have to look at my entire history here and some of it is not pretty, it’s embarrassing and weighs me down.

Ammit, Devourer of Souls.

Unpredictability can have the perks of appearing as a brilliant genius or interesting conversationalist or as a creative artist as you startle yourself and everyone around you with the unexpected on the good occasions. You are the good omen at events until…Then there is what I can only describe as unpredictability in reactions, that you do things that startle you in to shame and nausea and self criticism as you had behaved under the influence of a mood disorder when you come to the equivalent of sobriety. I feel pretty ill writing this but I am because I value courage and honesty.

What would Ammit do if I arrived in the underworld and everything I did was placed on Chthonic scales? Am I employable with this history of mental unpredictability and unstable behaviour? I tend to get rather creative about the metaphorical connections my mind makes but it’s a valid question. Am I someone people need to be protected from or do I deserve a chance to speak? Can I argue a case that I deserve to have a media pass for next year’s small arts festival or am I someone who is an unpredictable problem that requires managing in a way that distances me from the thing I love?

I’ve been sitting here thinking about my unpredictability and can I ask my artist friends for letters of recommendation, when realistically sometimes I am going to be under the influence of bipolar disorder. Is it fair if I ask them to stake their reputations on me? My record of work proves I am a fair and able reviewer of the arts but there are occasions I just want to forget where I was a nightmare child at events past years when I was under pressure. This particular year my own reactions startled me from the strength of my reaction to feeling unvalued and ostracised by the the festival’s administration from anger to me falling into a depressive fugue state.

I went through the motions to find out what happened but lost my brilliance when they threw me into a bureaucratic labyrinth. I didn’t have total mastery of myself and that’s a fair thing to point out, but everyone loses control and goes unpredictable sometime especially when they feel like they aren’t being treated fairly. Am I someone so startlingly unpredictable that I am a risk to others? I keep asking myself that and the answer is…

For awhile there I wasn’t sure what my normal day was going to look like and my GP had me on some medication to slow that startle-stop-startle cycle down until my life eased up into coincidentally with the dull predictability of the C-19 pandemic. It created a perfect environment forcing me to rest and recover, it created a routine to think around what happened and what happens next. I have to think about a professional life. I have to think about what happens at this small arts festival every year can do to my professional reputation. I need to find a way to live with both.

Now that I have stillness to think in, what should I do? Other than feel mortification and wait for something, anything to happen, I’ve been trying to take those excellent intentions I have and translate them into actions that are positive and create a space for loving recovery. That is the first step to moving from mortification to motivation. If I can’t hold space for my own recovery, there is no point to any action. It’s a spectrum of crisis-recovery and right now I’m in a rare period of balance in between the two states.

When I reflect on my recent experiences, I’ve got these two opposing histories like flip sides of a tapestry and I cringe when I think of one as the drama queen embarrassing herself at a situation and then get determined when I think of myself the critic who truly wants to continue, as someone who could be brilliant if given another chance to do my work. I’d been thinking I belonged in the arts rather than archaeology before this situation I’d ended up before judge, jury and executioner given I have no idea which of those bipolar DUIs have landed me on the block.

Which brings me to intentions versus my actions. My intentions are almost always good because I’m on the side of the artist and I get what they are trying to convey. It doesn’t help me that my dramatic reactive moments tend to be quite public spectacles; though I am working on creating a filter, a response rather than a dictatorship of my actions from the emotions bursting in my chest to what is about to exit my mouth. I am gifting myself another chance and doing the work to emerge from it someone worthy. But there is still unfinished business interfering with my ability to go forward.

This is me choosing to respond or pause by pursuing breath work, self work like daily journalling, meditation and therapy with counselling & a neuro-psychologist. So am I predictable enough to call in the witnesses and ask them to endorse me? I just don’t know which is why I’m putting this very personal blog up. Candour and vulnerability don’t make me a victim, just someone who is confused at her circumstance and is willing to try to be a better human by investing in the now so my future is predictable rather than crashes and burns. I want to live. I want to breath without this lingering ache in my chest.

Being this vulnerable is me following the advice of one of the people’s advice I tend to follow, which is Brené Brown, who says that you should only listen to the critics in the ring with you. But I’m not sure who to listen to, because I’m getting an incomplete message from a certain arts festival and possible feedback from my supporters. For days I’ve debated whether or not to publish this. Maybe it’s time to retire or move onto something else during Mad March. I’m truly bewildered by what happened and I want to recover, write and hopefully review but the last is out of my control. I can only ask that people say what they’ve seen of me honestly.

Clara, the Lonely Archaeologist, 17/04/2020

Leadership, fatigue and how I raise my energy.

The Covid-19 situation is difficult for almost everyone to comprehend because it just has broken down the structures society in a way we haven’t seen since the Black Death era in the 14th century. Apart from all the death and disability, the change created a situation people could require adequate remuneration for their services because there was a demand for employment. Change isn’t a bad thing and fear is the mind killer…wash your hands…

However Covid 19 unlike other plagues and pandemics, we have now have all sorts of media at our fingertips. Yet there’s so many operators that are so keen to be either the scoop of daily bad news and or click baiters a fog of uncertainty. How do you thrive if you can’t breathe?

I try to avoid giving rent space in my brain to every new discovery & prediction about C-19. I’m someone who values evidence based science and doesn’t want my mind full of misinformation and media hype so unfortunately I miss one to avoid the other. I tend to be the type that checks updates and restrictions first thing in the day and then forgets about the rest of the noise and panic because I have mad cats to talk to and a balcony I can sing Frozen songs from if my neighbours ever decide to go Italiano.

But let’s not lie, I’ve had insomnia at night because the conversation between my current and future selves has been disconnected. I’ve been oscillating lately in front of people as being the fearless Queen Cleopatra to today in private when I became someone who wanted to curl into a ball. My “thriving in uncertainly “set point had been hit by the bad news and I went down.

I’ve kept telling people to keep calm and carry on as the popular motto goes. I’ve been doing my best to be rational, pragmatic and just get on with the changes that corona virus has wrought in my life, so many things are still good. And then I heard Trump’s plan to defund the World Health Organisation on specious grounds about C-19 and ??? Yet it was enough that I figuratively screamed into to the abyss and had to give a mental health day to myself as a gift. To be a loving person, I have a care for myself. How do I do that? How do I find love when I struggle with my own adversarial nature.

For me, love it starts with caring and I’m lucky to have two little souls to share my time with. One of the nicer things is that Darla (Dee) joins me for my meditations. I’m particularly a fan of Marisa Peer and her goddess meditation. I never truly understood meditation before because it was all breathing and an empty mind as far as I knew, I got bored. And I’m the first to admit that I am not quiet or contemplative in a sit still situation, until a global meditation I attended last week really showed me that meditation can just as easily be about filling up your mind with value and I’m slowly becoming a fan of both guided and unguided meditation to listen to love.

The next thing I did was to find a very purposeful and mindful activity that brought me joy. Today it was lingering in bed a little longer that I planned to savour cuddling Dee and holding her paw in my hand (she had a rough day of her feline flu vax) and this afternoon it was brushing Issy and coddling her in ragdoll cat tummy rubs & patses. These are the moments I have right now to smile at and won’t regret spending one minute of my time on my deathbed for the things I did and didn’t do. Those moments with my familiars are love in motion as much as love in stillness being flung in meditation.

I mentioned I’m terrible at stillness and serenity earlier so one of the most important things I can do is connect to love through movement. It was walking by the bay near my home but I’ve settled for dancing around my flat to the music that tells my life story and I connect with myself as a pure being of emotion and the sense of pure connection with joy just raises my energy to a place I can cope, even thrive in uncertainty.

I do the standard self-work such as I journal daily. I have started a new gratitude practice of thanking the universe for my blessings over a candle to send light into the world at dinner. However the most important things I think though is actually connecting with the people I love in a positive way, some of them even tolerate actual voice phone calls because they love me. As preparations to wind down for the end of the day, I use a playlist of rain sounds and that’s where everything comes together. It’s having a good day and that is a day you were good.

Dee..

By Clara. 15/04/2938

The dress I gave away…

Anybody who knows me even a little, knows I’m obsessed with the Doctor Who but particularly the TARDIS. It’s all around my home and possibly is my favourite character in the entire universe after my favourite author, Neil Gaiman, wrote The Doctor’s Wife. I am a tragic Whovian to the point I used to have two dresses in what I simply think of as Tardis Blue and when I was still doing geek stuff, I used to cosplay a time machine which is really archaeologist wish fulfilment if you think about it.

It was a great dress, with these frilly sleeves and it was tea length so I felt comfortable moving around and being modest in it. The dress got a lot of wear but it was cared for as one of the prize possessions of my wardrobe. It was from a store aimed at plus sized women so it even fit and draped in what I though was a flattering fashion. I’d wear it out to boost my confidence on a bad day. I could do anything in that dress.

One night after coming back from the world’s safest poetry group as a fellow member puts it, I was standing at the tram stop and this van of yobbos pulled up yelling abuse at fellow waiting commuters and hollered at me that the dress should cover more. I was so mortified and sickened I never wore that dress again and a week later, washed it carefully and donated it a charity shop.

It took me another year to feel comfortable to wear a dress and until recently, all of them were tea length or well past my knees. This is why I take body shaming and negativity very seriously, especially when it comes from thoughtless individuals who though they were entertaining. I am someone who believes in safe spaces and punching upwards with comedy, sometimes though I miss the point.

There’s a quote from Buffy the Vampire Slayer about the character, Anya talking about herself, that I feels sums up my own sense of the world: “I dislike Anya. She’s newly human and strangely literal.” I don’t always get it and since neurodiversity runs in my family, I’m not always going to get a joke or how it went wrong.

Coming from a neurodiverse family has been incredible in so many ways, we were always interested in history, science and curious about the world around us. My parents gave me so many stimulating opportunities and I can say like before, music and dance (to a lesser extent) saved my life, I had a lot of access to books and as a kid I really loved our set of leather bound encyclopaedias and year books. Most of the neuroatypical diagnoses in my family are centred around ASD clusters and I suffered a great deal at school because I wasn’t given any of the interventions I need. Some of the kids in my family that have been born since I left school, are highly functioning, highly intelligent and challenging my sister as the state she is in has a much tighter lockdown than SA. Things are much better for them and they are getting what they need to succeed.

So how does this all connect? A blue dress, neuroatypical family members and me having a dark and very inappropriate sense of humour? I think it comes down to me trying to say there are times I don’t get it, ramble on, say outrageous things I think are normal (trust me 3 years of studying vampires definitely adds a level of gore that leave jaws dropped). I had a tough Fringe season, I thought my reviewing was going well but like a game of darts, there are always hit and misses. I made a egregious miss and like the collateral damage of my inability to play darts (or understand them), I ended up stabbing myself and now I’m trying to remember everytime I’ve ever won a game of metaphorical darts. So for now my involvement in the arts is simply curating a corona virus resistance playlist of all the stuff I find cool in the creative and performing arts world. It reminds me life is worth living.

I haven’t been sleeping well since Fringe. I’ve been up at 4am and that’s when I listen to music and make lists. Soon I’m hoping to fill this with Masterclasses of some of my idols like Gaiman and Astronaut Chris Hadfield to keep my mind busy in a more useful fashion that visiting all the corners of YouTube for material. I’ve been thinking a lot about the Adelaide Fringe lately and that perhaps it’s time to give that particular dress away for good since every year it just gets harder to be a reviewer, accredited or not.

It’s not been helpful for people with disabilities in 2020 (as I got feedback from a mentor last night) and witnessed several times including someone tripping on a guide dog. Though Matt Tarrant is an awesome champion and he is someone whose words have value. Some of my friends with disabilities were less than enthused about getting out the venues because it’s become such a crush of human proportions it’s not safe for many of us to get around. Maybe it’s time do sun glasses, a big floppy hat and to enjoy reading my unread book (shelf) next summer than put myself into an environment I’m vulnerable in. I’ve still got a few interviews and owed reviews to do after I research making tea for a class blog that I’m excited about. I’m also very enthused about finishing a few e-books over the next few weeks now we are living a slower life!

Clara, The Lonely Archaeologist, 15/04/20

The transformation of Cassowary Cate versus becoming Clara Rose.

Cassowary Cate is best name for my psychopath.

I’ve been doing a lot of thinking lately of what kind of person and leader I am. I had been thinking about leadership development well before the person I’ve become. I realised I needed to make space for the human being I am first before even trying to step forward as a role model, old me and future me needed a chance to talk. I’m a very reactive, over sensitive person instead of a responsive thinker, so I was tying up tonight’s loose ends on social media before diving into a book or movie and I saw something on the socials that made me angry, I was beyond angry. How dare they? This is what they approve! I raged to myself. Why aren’t I good enough?! I was ready to rage to my mother on the phone (who thinks I’m a queen, those tiaras really work!) about how at my core, no one liked me and I was a failure from feeling devalued by my colleagues. But then I realised I was about to make the choice of love in calling someone who loves me, and as Marisa Peer says, I AM ENOUGH. I have it scrawled on my bedroom mirror in lipstick like her famous anecdote.

Today I was attacked by a peewee (like a small magpie that feels like a small tiny fist as it connects with your face) who went for my eye and successfully made it bleed. Peewee 1, Clara 0. I am fine apart from slightly concussed at a guess. I am well but talking to my mother about my latest bit of chaos, all I could feel compassion that this little bird saw me as a threat and that moment of any illustrates who I am, who I try to be as a person. However on Facebook, at that exact moment I filled with rage like a fetid water ballon of toxic emotion, I was not someone who had made the choice of love first. I was in the mode of a prehistoric bush chicken ready to eat that little peewee who needed to defend itself (representing my resentment, jealously, inability to deal with a perceived threat to me) and I was felt a myriad of minutes of mixed, seething emotions from Shakespeare’s witches three would be pleased with. I despaired at entitlement, the milky blind eyes of newts and a lack of gratitude in that representation in my toxic brew. I don’t lie that there some very strong egotism operating of how that these demands were this picked over a message of comfort, love and peace?! Why aren’t I good enough for them.

And then I stopped in my tracks. It was a pause. I took a breath, just an ordinary inhalation. Nothing of note. It was a pretty boring few minutes if I write with any veracity, I actually felt sorry for me and sulked which is why I was quietly breathing in and out. People don’t like me as a representative but did that actually matter if I do my job as best as I can? Representatives don’t all have to lead in modes of leadership as its currently defined. Pause. In and out.

Yet the respiratory intervention was enough for the inspiration to enter my body from my face and move to the bottom of my feet, I felt the air fill me up and travel back out with the expired things. That pause, the breathing, gave me just enough time to hear the whisper: Who do you want to be? I certainly wasn’t comfortable in my body as the adrenaline and cortisol flooded my limbs preparing for fight or flight, I actually squirmed and ached because I didn’t want the negativity in me. My body was restlessly ready to expel this experience. I was almost rushing to let it out, I wanted my beautiful André Rieu concert happening where my body was doing as much as it could in concert, a graceful dance.

Right before then, the choice had not been graceful, not love in motion, not love in the stillness; the process of recovery made me feel so sick with the churning waves as they crashed out of me in slow movement. I re-negotiated the choice again that I would let the flow that is philosophy of love out loud demands of me, it’s all or nothing. So I leaned into the love and realised that this, it’s tidal. It comes in and out with every breath in every minute if we invite it to. I have asked it into to my life. I feel the grace and the the whisper of singing glaciers to the roar of waves or the patter of rain on windows. The choice of being loving is the starting point. It will be a constant challenge and a constant choice but the rest will come as the love hums along. Meditation is the quiet place it starts.


Clara Rose Santilli, Love Out Louder and victim of random bird attacks. 04/04/2020

Space for myself today, whispers to go into the unknown. And my assignments.

Elsa making the face I’ve been internally lately.

I live with a condition called fibromyalgia and it has several complications including joint pain (that won’t permanently damage me as far as specialists know) and fatigue (some days I’m more peppy than others and it has no relation to my blood:caffeinating ratio). I was exhausted because I’d be trying so hard to do so many things and hitting brick walls at the Fringe and on student council at Flinders University. The anxiety of other students leaning on me as their representative to do something for them and feeling powerless was a very big moral weight for me to carry and I felt by being ill I was not doing what I was elected to do. I’d been unwell with a chest infection and pneumonia I ended up with in the last week of Fringe/O’Week and it was tough physically isolating since I tend to stay home when sick (when possible in a sort of self imposed quarantine that’s now called self isolation or social distancing.)

The loneliness of every person now having to experience this distress and loneliness was particularly difficult and I was behind in class work as a distance educated student, because the anxiety was so paralysing I couldn’t do anything but freeze. Flinders University has become this huge institution having to make some tough choices to keep us learning and safe, with some groups making political decisions that I may or may not agree with, tension thick with everyone with different ideas & plans about what’s best for students and staff. I took a hard stance, I decided on my own path is the only thing I can do, even if it put me at odds with the others. I can stand alone but it hurts more psychologically than physical pain. My underlying sticking point is I want to be liked and included. Irony is years have disconnected me from that space called life. Everyone at Flinders is trying so very hard that I think we’ve just created an atmosphere of fear and distress.

I had worked hard on a statement intended to convey peace and comfort to some of my cohort who missed the April graduation ceremony (I’ll be looking at tidying up some of these loose ends tomorrow and hopefully we’ll have a Facebook page for us Mature Age Students). I had been told no to my message as inappropriate and the campaign on ageism & graduate employment is going more slowly than I anticipated because we are working very carefully on planning and creating something thorough. Yet every tick of the second hand of any clock I could be felt rushing through my veins, throbbing in my feet. I was so frustrated I actually made myself unable to walk.

I am slowly considering setting up a social media nexus for mature age students to connect over the next week. If you are a computer genius or have smart ideas, the best way to get me over the next week is through my LinkedIn or my personal Facebook while we are figuring up the how of setting up the socials.

Jeri Ryan as Seven in Star Trek Picard.

I thought about who I wanted to be like and it lately comes a lot back to Annika Hansen better known as ‘Seven of Nine’ in Star Trek. Out of cannon there is a suggestion she’s the next Borg Queen and in Picard there’s a missing sense of reconnection to other cyborgs in her that she misses from being absent from the Collective and other XBs feel similarly which I relate to. She also has a bit of a temper to work through and as someone who is working on being more collaborative than adversarial, I grok Seven becoming Annika.

So for the last few days I took some time to mentally regenerate and make space for myself in music and literature and silence, but mostly sound which for me seems to be tied to how I see and feel reality. The first thing I did was get myself into the Love Out Loud Global Mass Meditation event.

Love Out Loud Mass Global Meditation

Anyone who knows me, will know I am very skeptical of meditation working for me because I’m not still, I definitely will never have an empty mind. I do not like to be anything but a flurry of chaos & ideas but I couldn’t function from the chronic pain and since I was literally & figuratively bed bound and what did I have to lose? Fibromyalgia can be extraordinarily boring.

So I got online to catch the great opening ceremony and meditation by Nicole Gibson, founder of Love Out Loud, among her many other accomplishments. I was trying to focus when my hyperactive tabby (who had been zooming through the flat in a hurricane of chaos because she’s a minion of the dark forces) joined me by my side in bed and did not attempt to chew in on the fairly chilled out ragdoll cat hanging out too.

It was uncanny but the peace we created here at my home, radiated locally from me to the felines, from us to the globe, as a group universally pushing for peace to dispel the power of the pandemic and it’s climate of fear. We created a climate of love. But what really sold me on meditating was that it stopped me from having to yell: “Darla! No! No chewing on your sister is not acceptable behaviour!”) I gave it a go since the mad cats thought it was a good idea, a proper Disney lady adventuress will listen to her companions. It was a start. A small echo into the unknown…

Elsa and I hearing the same call into an unknown space.

The third guest on Nicoles’s mega event is a favourite YouTube guru of mine, the extraordinary Marisa Peer. She gave a meditation on boosting immunity while not 100% scientifically evidence based as I usually like, she lead us through a meditation that convinced us that our bodies were capable of working as exactly as they needed to be to fight infection and inflammation. It sounded like the science was probably a little sketchy but the technique was brilliant to get you into a headspace to improve behaviours that you enact when sick like exiling my low mood cycle from France! It was acknowledged and let go with peace. Love you, France!

I visualised that my body was similar to the Palace of Versailles and had an André Rieu-seque masquerade grand ball going on in my body and surprisingly the visualisation got me out of bed well enough to do some dishes and feeling a little energised. We don’t ask to get sick, it’s not a punishment (it’s a nasty little thing that’s not even alive that replicated and uses us). It’s when we open ourselves to new things then perhaps you’ll be surprised by the fact you are a walking masquerade (that looked like The Girl in the Fireplace for fellow Whovians). I think that even if you don’t buy into the scientific benefits, a meditation that tells your body it is capable and able as much as it can be, is a good thing.

I see the place of Love Out Loud’s philosophy is that it only gives you a single choice and that is to embrace love and not fall into fear. Fear is tiring, I’d know as the expert on existing in uncertainty and crazy brain wonkiness. There’s a decision I consciously have been making over the last few days to choose peace or grace if I can’t find the love in a situation because fear and anxiety don’t leave space for recovery or even to find me and my gratitude in the sea of anxiety with universities moving online for our safety.

Nicole Gibson pulled together an amazing event but I must confess I needed to sleep so after her musical friend began his amazing compositions hear just wasn’t my jam that day, I needed something a little less stimulating. Of course I found myself drawn to listening to Jonna Jinton’s traditional practice of kulning, a very fancy traditional herding call that was both a greeting and farewell to cattle. I also may have fallen asleep listening to a singing glacier after the lullaby to a wolf and it made me aware that the decision in loving out loud has to start as a quiet whisper within you as inspiration and eventually will come out louder as expiration the more we find that choice of to make of embracing the decision of love. Breathing helps a Queen like me.

For me it’s tied to the grace and faith I have in my old gods and my old ways and my old values and the fact they still whisper words of community and hospitality through the frith echoing in how you honour your guests and ancestors. The only thing I can be grateful for the C-19 pandemic is that it has forced the world to slow down, take a beat and if you are fortunate to be able to truly comfortably self isolated, people are choosing kinder behaviour if not love, more consideration and respect as we have to become a team as a species to survive this strain of corona virus.

Yesterday, I highlighted some terrible medical choices I’d come across in my post. The horror of the worst of human behaviour pushed me into a direct choice to exist in love and exist in grace. Grace to me is love in motion and action; I’ve been trying to force the movement of things with the entirely wrong motion, the anger and frustration were drowning out the answers and love & gratitude. I’ve signed up to become a Love Out Loud facilitator and it will be amazing connecting my ancient self through to my modern, future selves since we are several different people across a life time and I look forward to seeing who I can become and who I was.

So I took the luxury of a day today to make space so I could hear the whisper of my soul and heard the kulning farewelling the end of my life based on fear, anxiety and anger and honouring that me leaving as I welcoming a season of having my heart melted and sing like the glacier with love and all its potential, thanks to Nicole Gibson for connecting with me. I sense this reconnecting between my past, present and future and I feel like love have opened space for something new and I’m so excited to find out where this journey is taking me

Goodbye Cassowary Cate, thank you for your lessobs.

Hello Clara Rose, pleased to meet you.

Clara Santilli, professionally failing student at this moment 03/04/2020

The future of archaeology’s heritage and the antipodean myopia in accessibility for all. 

Indiana Don’t!

Welcome to tonight’s actual accessibility archaeology post from me as the Lonely Archaeologist. I started this blog because I thought there was something fundamentally wrong with the way archaeology was practiced in Australia. There’s a cognitive dissonance going on in modern archaeology that to be an archaeologist, that you need to have a degree of mythic superhumanness, I call it “the Indiana Jones syndrome”. You must possess an endurance above the average human being’s limitations and have the sort of intellect that puts Stephen Hawking to shame. Most archaeologists are simply normal specimens of homo sapien but we do enjoy basking in the glow of the legendary tiki torches in the Temple of Doom.

If you aren’t*normal* (and I have significant challenges to overcome but I see my tenacity and persistence as character traits a good archaeologist needs), I was told that I couldn’t be archaeologist. I’ve stuck it out over the last few stressful years, becoming something of a farce in the eyes of the other students, but I have endured. So alongside developing my communication skills to better explain to a diverse public and community what we are doing as archaeologists with scientific communication, I’m trying to carve a space where somebody different can come up behind me without the same resistance I’ve met. There is room for everyone.

Don’t get mad, write a blog post.

So I started this blog as a way of practicing those skills in a heritage appropriate and adjacent area for a disabled archaeologist in documentary and film making. The current system of culture heritage management in Australia wants an archaeologist who can do everything, because I need accomodations out of the ordinary, I’m seen as broken goods. Let’s not pretend I’ve been denied field work opportunities because of my *situation* like the one time I applied to be a normal executive club member but was Othered because I had the audacity to criticise a club. I found some smaller demonstrations and presentation work on my own but I’m unable to regularly find places as a volunteer to excavate or do survey work. I can’t dive medically or even participate in a conservation field school in Australia last year because I wasn’t physically able enough. I can’t get work as tour guide at a library, local museum or any other state institutions I applied to — despite doing extra training and being in the leadership program run by Flinders careers called the Horizon Award. That’s me with the head of the SAM at a Night Lab event in 2016, one I volunteered less than half a week after being hit by a tram so let’s not say that I haven’t met the superhuman endurance expected of an archaeologist!

Curious Beasts Night Lab event, 2016.

I spoke up on this little blog about my difficulties in finding acceptance at Flinders by other archaeologists & students. As a result, Enabled found me, a dis/Abled and Enabled community of archaeologists and students from a wide international context and I learned about a model of archaeology that aims to be inclusive and accessible for all in so many ways across so many branches that is a whole lecture in itself. I’ll explain about them more if I can get my ten minutes of fame at Flinders.

If you’ve been reading this blog at all, you know I’m a gigantic academic fan of Doctor Who and time travel in general. In fact last year I almost had a chapter published based on queer attitudes in archaeology and in science fiction in Beyond Indy and Lara (but missed out due to my university’s inaction to remove a stalker from a group project in an elective subject and unsupportive lecturer (whose teaching pedagogy was incompatible with advice given disability service’s advice and my right not to be stalked because I wouldn’t do her work for her), it aggravated my newly diagnosed but not managed, fibromyalgia.

That is me on a ghost hunt at the Old Gaol trying to get review experiences of Haunted Horizon’s award winning tour proving I can get around a heritage site safety except for the ghosts. Those guys just loved me so much I got a stigmata friendship bracelet…


The thing is, when I was studying Doctor Who’s vision of archaeology in the future, I was encouraged because the most well known archaeologist, River Song, was a psychopath (with Time Lord DNA making her as different from neurotypical like me). There was also Jack Harkness, a pansexual time agent who was pretty close to Lara Croft in attitude towards black market antiquities, deviated from the Indiana Jones stereotype and of rugged Howard Carter manly adventuring tomb raiding mythology (even poor Lara had to be more macho than the men and was prey to toxic masculinity). Here are some famous British examples of archaeology of the speculative future and neither of them are like the models we have in Australia. Here we get the Man From Snowy River…River Song had fought against her mental illness/injury all her augmented life span and Jack’s inventive approaches to illegal artefact acquisition and selling were anything but conventional archaeology. He did less damage than Lara and Indy combined! I like to see the innovation they came up with as the spirit of enabling people to do archaeology, give us the tools and opportunities to succeed, we tend to succeed.

We can all change.

These two characters with the addition of Berenice Summerfield (from the Big Finish extended Whovian universe), are holding space quite literally for diverse Enabled archaeologists like me in popular culture. The EAF starting in Britain is a part of this gradual shifting in position of accessibility in archaeology and expanding the experiences and diversity in the heritage discipline. Some of the archaeology establishment don’t have the foresight to see this how times are changing.

I’ll post more on eventually on this and how it all relates to a book with the title “Time travelling and the future of the past” by Professor Cornelius Holtorf and how my ideas were received in conversation around the visit to Flinders about these changes happening all over the world. I imagine after looking through Holtorf’s book that lived experience and the futurism of archaeology is going to be a fascinating conversation.

Time agent, Captain Jack Harkness from Doctor Who.

Clara Santill, 2017 (edited 15/04/2018)

Down the rabbit hole: what living with my condition makes it an ability than just a disability. 


I’m studying a masters degree with the aim of researching disability in Australian archaeology and cultural heritage management. Even I don’t quite know what that means yet, but I thought I’d write a follow up to my horror themed post on Split and actually explain why I like the terms dis/Ability and mental health condition. 

My story with mental illness came young with my first depression episode manifesting at fourteen and I started taking medication at sixteen as a suicide survivor. Between fourteen and about twenty-four years old when I was correctly diagnosed with bipolar affective disorder (type 2) and PTSD, I needed a lot of medical and therapeutic interventions so I term that period of my life as illness. There would be other years of crises and some where recovery seemed just in reach and cruelly snatched away. There were years of specialists, speculation and the fluctuation of my condition that really made me decide recovery and wellness and crisis and episode were all convenient words for other people to describe how pathologically I was dealing with my disorders. Then I was labelled chronically disabled rather just sick and felt smaller than just failing uni and mid twenties mile stones, so diminished even further because the ‘dis’ prefix meant my ability was substandard and I’d never reach my full potential, that even that hope of recovery was the fruit tree to my Tantalus. It was limiting. It was very heavy. I felt caged, stuck in the mud. And I was thirsty; I wanted scope. 

Sometime, in the last two or three years since I first published Broken Archaeology , I’ve started to think differently about the way I describe my personal cognitive and intellectual domains and instead of focusing on the limitations, I looked for my strengths and capabilities. I joined an international online discussion group for people like me studying dis/Abled with archaeology and it was here I first found the term *dis/Ability* and its sister term Enabled. I don’t know the history of those words and I don’t think that’s relevant to my story right now but I will discuss them in May for National Archaeology Week. 

What I do remember is, at first dis/Ability annoyed the heck out of the English student in me, but it was the accepted term in my online support group’s culture and I was going to learn to use it, even if I didn’t love it. And then a funny thing happened, I actually got what dis/Ability meant! 


Before I returned to archaeology in 2013, I actually referred to myself as crazy and a manic depressive when I started a counselling course that changed the way I look at medicalised language. I still stand by the crazy, after all yesterday I was at an inflatable fun park with 5 other adults trying to recreate scenes from the Assassins’ Creed (2016) movie and discovering I’m excellent at falling and landing. But I’m no longer describing myself as a manic depressive – the counselling course called us mental health consumers (which I still hate and would you like fries?) and to describe living with X illness or disorder. So I was living with my disorder and on the way to recovery from my illness. 
And then my horrible years of 2014-2015 happened, with failed attempts at peer support from mental health organisations supposed to help me reintegrate into the community, having to seek victim support counselling as a survivor of harassment from random men in my local community, the neighbours and a landlord from hell and having to move twice in six months and failing university after falling into a tram. I lost three significant friendships due to mental illness as I was in crisis and that is the appropriate language for someone suffering a sickness based in the brain needing help. And I gave up on recovery as an ideal of the psychosocial model of mental health rehabilitation lead by consumers. And I stopped thinking of myself as a consumer and survivor. I threw the whole lot out the window with wellness and mindfulness and breathing exercises…

I started to see myself as someone with a condition that I managed. I still take my medication, see my doctors and my psychologist and make sure I eat, sleep and do the exercise my physio recommends to help me rehabilitate after being hit by the tram. That’s all basic self care along with me playing with my therapy cats, listening to eclectic music live and recorded, journaling my thoughts GIGO style, LARPing with my friends in ARC and going to public lectures on the arts and sciences.But I took it one step further and realised the root of my three chronic dis/Abilities is the fact the word divides it into what I can do – focuses on my ability, what  the capabilities I can develop and the unique aspects of my condition that can actually be quiet enjoyable. What do I mean by that?

In 2016, I found myself unable to contemplate returning to some approximation of normal that I’d never had. I added a few new terms to my vocabulary like neurodiversity and coined my own, neuroexpectional to explain the unique aspects of my condition I enjoyed and found advantageous. I took control of those things that appeared to be uniquely mine and made them a strength. I’ve joined my university’s postgraduate leadership program run by the careers department and I’m learning to leverage them in my everyday life in positive ways. 

For me, having bipolar affective disorder as a condition when it is well managed translates as an extended capacity for creative thought, an appreciation and passionate engagement with my world, more intense emotion so I cry at films or experience frisson when hearing beautiful music, the sun is brighter some days and the world, life runs right through you as pure passion. It is a sense of being, enjoying the feeling of being alive. The abilities of my dis/Abilities are coming to fruition in a return to what I can do: going to university this semester to learn to make documentaries in 2017, blogging here again after a hiatus, even just considering some volunteering over the summer and year, the things I achieved last year demonstrated at the SA Museum Night Lab event and speaking about archaeology at National Archaeology Week after being hit by the tram and being more and more involved with the group, Enabled, now as an admin. They gave me direction for my last two years for my research in my master’s degree; this week I’m also doing some research assistant work with my mentor and preparing some CFPs for a conference in New Zealand in June on my other great passion, Doctor Who.

This may sound clincally like hypomania pipe dreams to my arm chair psychologists readers (hi!), but through my lived experience of a hypomania (bipolar high) episode “and doing all the things” versus greatly enjoying a capacity to appreciate the rhythms of life, for me they are very separate things I’ve experienced temporally and in context. One is a medical illness like depression that I urge you to seek appropriate qualified help for immediately because so many people want to chase the high mania and hypomania give, but it’s like a drug induced false euphoria with shallowness and ultimately it’s a fleeting experience that you lose as you crash to Earth. 

The other aspect of a personality shaped by a managed approach to my conditions I have to explain is much more than emphermal, it is realising how much depth I can experience and cultivating certain nuanced aspects of my personality over the years to a place where they are a gift in my life rather than something that diminishes me as a person. Those experiences and character lessons stay with you and evolve your personality – changing you is key differentiating element here unlike (hypo)mania or depression which are just illnesses of the brain, rather than a personal apotheosis. This is a more hopeful post after last one but dis/Ability is a complicated process and I wanted to show the other side of the coin that it is not a life sentence to be abused by society and the health system, there is in fact a silver lining that in with the right treatment and attitude, you can make it what you want it to be. Am I recovered? No. But I never was really normal either and as it says in Alice and Wonderland, let me tell you a secret, all the best people are a little mad.

Clara Santilli

The Methodology of Madness: the real face of mental illness and I don’t look like Carrie. 

To my shame, I saw the *thriller* by M. Night Shyamalan, Split.  I’d like to think that anyone who saw this travesty, would realise that this is a horror movie and using my rusty old film study skills, an origin story for a villain to set up his sequel to Unbreakable. It’s an implausible origin story about Kevin’s evolution from his alternative personality  Barry to the collective multiplicity of The Hoard. The notably exclusively female victims and depiction of mental illness are just  window dressing to a very short story that doesn’t do much apart from showing some truly scary white guy dancing by Hedewig.

So apart from showing McAvoy’s tremendous acting scope as  Kevin/Barry losing control to the Hoard, it’s  a blatantly obvious incorrect depiction of what is known in popular culture as Multiple Personality Disorder (or DID) and a good dose of psychopathy in Kevin’s evil multiplicities, Dennis and Patricia, for measure -which is a junk popular  diagnosis anyway, I recommend James Fallon’s The Psychopath Inside: A Neuroscientist’s Personal Journey into the Dark Side of the Brain (if you’re curious about it). Statistics however say those with a mental health condition are more likely to be the victims of crime that the perpetrators.

The real horror story of mental health conditions probably looks closer to One Flew Over the Cuckoos Nest. Most of us are relatively *normal* people trying to function in a world that neither truly accommodates us -so often we are gaslit when we are considered to be harbouring inconvenient “unreasonable” feelings or to be *having an episode and in crisis* based on normal frustration, often at situations a neurologically typical individual would deem unreasonable by doctors,  carers, family , friends. Then if we the neurodiverse end up unwell and urgently need to access help, have to use the hospital mental system, where we cease to exist as people in our own right and become monsters to be contained far from the sight in spite of the party line of treatment in the community being the best practice. Yet despite a glowing public rhetoric about treatment in the community being best as part of the psychosocial model of rehabilitation, in the medical system the mentally ill become persona non grata and are hidden in locked wards.

In my experience, none of the positive media spin by mental health providers and organisations help such as RU Okay Day; and, the “peer” support workers employed through these organisations often do not follow through with reintegration into the community but take a fluffy feel good approach they can use to show their supervisors that they should be employed. Only one peer support worker, a rehab counsellor I knew personally ever referred me to the resources that could help me and I’m incredibly grateful for her realistic approach to how my life was.  In comparison, the two assigned to me over the last 5 years I saw, were never receptive to the things I needed to get by or goals I wanted to achieve in my time with them.  For me, I abandoned the false hope that these organisations would have provided me the resources so that my living situation would change and my lifestyle would improve.

While I’m not fully rehabilitated, I have a new normal now and I’m tackling researching disability in my chosen profession I’m studying at uni, because to be different in my field is a black mark in Australia from my personal experience. As to social inclusion, I have a few good  friends but I had to go to many different places on a leap of faith to find them and join local communities to find a safe place I could exist free of bipolar’ stigma. But it was a long road to get here and create the opportunities that freed me from the system and the stigma of living with a mental health condition.

The  extra challenges a neuroexceptional individual faces, even if we are behaving within normal acceptable behavioural limits, are often mistaken as disordered symptomology – my quirky quick speaking style with wild brown hair, flapping hand gestures and as an Italian descendant with my great big Roman snoz are just features of my personage. In a neurotypical individual, none of those things would even have been psychiatrically or psychologically considered relevant in the first place / unless I disclosed my dis/Ability. I did and it was a mistake.

I was never told I didn’t have to disclose my illness as a right and have been “out” as mentally ill for most of my adult life because after 20 years, there’s no way that genie is gonna fit into the lamp again. As a young adult, I had no idea what stigma was and how I was a victim of it by virtue of my honesty. There were a lot of unhappy years as a result and I wish I’d had been given the agency and choice to decide what I was going to tell people when I was ready. Let me tell you a minor horror story about  being “known” as having a mental illness versus cultural prejudice in modern medicine in Australia and why you might want to not disclose your dis/Ability to anyone other than medical Team You.

Once in 2011, after a major health scare, I was involved in trying to get my maintenance med regimen re-adjusted and desperately needed access to someone who could adjust my prescription psych medication quickly at a safe dose before I ended up dead (it was medication effecting my heart with extreme tachycardia for the morbidly curious). After a three day or so fight to get any help at all from the local emergency mental health system on a Monday that drew through to Friday morning, they called a privately practicing individual, a totally dismissive psychiatrist that laughed at me on a Friday afternoon, wished me good luck finding treatment before next week and offered no solution. At all…my life was disposable to the medical professionals of this town apparently.

The private psychiatry sector in my country town was backed up by at least three months and that seems to be standard around Australia- so what’s a gal to do to remain well and med compliant if her GP is unavailable, no other professional qualified in mental health will give her accessible care to safe medication to maintain her recovery and we are heading into the weekend? It was obvious I didn’t belong in a psych ward based on side effects but because I was denied drugs that gave me dignity and a quality of life as a dis/Abled young woman studying counselling at university, I followed the advice of my text book and went to the hospital quick drop clinic in to get a script and then to the pharmacy. Bingo, right?! Nope. You shall not pass go and possibly end up in Gaol.

After establishing the country town in question didn’t actually have a mental health service I suspect unless you were a teenager, a drug addict or a criminal on a violent drug related charge (maybe I’d received help if I’d went on a McAvoy Beast style rampage as ‘The Hoard’). After being exposed to callous indifference at my attempts to stay well; after I was stunned and left fumbling by some guy calling himself a trained medical professional treating the whole situation as hilarious – rather than my whole life – I still had no answers. I tried a private script from the hospital’s drop in  clinic and found I couldn’t get the medication except for $300 (more than my fortnightly rent!) I probably could have found those criminals mentioned above and probably get my prescription meds cheaper from a dealer than a legitimate chemist.

There I was, desperately trying to secure the primary medication I take -that I needed to keep myself well with but I couldn’t afford privately on a disability payment. As a last ditch resort, I went back to the local hospital in an attempt to get the prescription I needed at a price within my means to keep myself healthy and out of inpatient care. So I went to the ED at the local hospital as the psych ward was admitted through their triage service- by now it was dinner time. I was tired, hungry and just wanted my dinner and a warm bed without another night of vicious sinus tachycardia.

At the Emergency Department, I was angry and frustrated, speaking quickly because of the urgency of my predicament to the triage nurse because I was rather scared at what I would happen without my night medication since I’m a compliant consumer. I know that drug’s value to my wellbeing with a rapid cycling, episodic condition. When I miss a dose it’s nothing short of catastrophic; in the short term I get withdrawal syndrome that feels like the worst flu you have ever had, brutal insomnia which exacerbates my dis/Abilities and without it for more than a few days in the longer term, I get very unwell. I’ve been taking medication for more that 2/3 of my adult life and have colloquially what’s known as “lived experience” that is often recognised by progressive professionals as equally important to listen to a consumer as well as their text book training.

Instead, I was told by the small town triage nurse, who wasn’t listening to a word about me being Italian and talking quickly was absolutely normal for me, that I was manic and confused. That what I was saying wasn’t reasonable about needing my particular medication to stay well was bunk because I was *sick*. She implied had no idea what I was talking about and gaslit me as unwell. A sick thing. Lock it up! She seemed to have no idea the consequences of abruptly coming off that medication either without tapering down the dose either. It’s not pretty as I later found out.

In a hospital situation, I don’t know if there is anyway since my diagnosis is disclosed, that anything I impart to a triage situation that will not end up with anyone and everyone assuming that I am suffering hypomaniac delusions and have no self perspective, awareness of my circumstances and they need to take away my right for bodily autonomy by putting me in a white sterile hospital room cage (all the while not recognising my mind is part of that right to bodily autonomy and my brain didn’t stop just working within hospital walls). The small town nurses hadn’t even performed a MSE before dxing me as psychiatristly unstable-so I quickly walked out of that ED while there voluntarily and decided never to go back.

It’s not been an isolated incident sadly to say  and I’m still leery of hospitals even in a bigger city where you’d expect them to have better resources and education into invisible disability and expect to this day, would perform better. It isn’t the case either since after moving to a larger city with presumably better medicine, I had a case of simple syncope on a hot day after running my sick cat to the vet in under 10 minutes and ended up in a short stay mental health ward based on my dis/Ability since now fainting is a sign of mental illness. I’m on medication known to cause fainting in hot weather for migraines.

To further harass and terrify me, I was given the wrong information about my rights under my stare’s mental health act that I was there involuntarily by the nurses who intimidated me into staying until I had to get a friend with a psychology degree to argue my admission and release with the nurses…but once you disclose your condition, you seem stop existing as an individual with a right to dignity in your care and become an exercise in pathology like cancer to be cut out and exorcised like a tumour in a hospital system. This is why I like consumer driven community health where being person is not a privelge but the very most baseline treatment.

The cultural stereotype of the ranting, fast tongued Italians aren’t there for nothing (I have a mono brow and gesticulate a lot too, so probably best to give me room when I get passionate). But this is a fairly common occurrence for anyone who understands what the day-to-day difficulties of navigating a mental health system that despite the media spin focussing on the psychosocial rehabilitation model of recovery in the community and consumer wellness. We, the users of this poorly system, aren’t actually given the agency and privacy, ascribed enough self awareness by carers and doctors alike and access to resources (especially in an emergency) to navigate the system let alone direct our return to whatever our individual approximation of the new normal is for us living with mental conditions are.

What a good doctor looks like, sadly,  was best portrayed by Betty Buckley as Dr. Karen Fletcher in Split. Dr Fletcher advocated for her consumers as people first who needed her help and treated each multiple personality as an important part of her therapeutic process, worthy of her respect in her treatment of their illness for example by letting one of Kevin’s  (McAvoy) multiplicity’s Dennis, known  that she would not invoke the primary personality and the need for Dennis’ existence as part of protecting Kevin. She had also arranged for further care for her consumers if something should happen to her and established a research effort into having DID internationally accepted. If we ignore the fact she decided to not contact the authorities when she became suspicious of Barry’s (McAvoy) change in behaviour and alarming emails for emergency sessions which anyone with basic mental health training can see as red flags, we can perhaps ascribe this to the fact director M. Night Shyamalan has a poor history of writing strong plausible female character’s capable of agency so he fridges 3 of the 4 major female characters and the one who survives has been punished by the patriarchy off screen and in flashbacks. This discussion actually will tie in with my next post about the current influx of female lead television & film about strong women and film that caters to a female aesthetic and gaze that happened in 2016. All in all, mental health and what constitutes illness to recovery falls on a highly movable, personal and subjective spectrum.

Clara Santilli