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