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


Author: lonelyarchaeologist

I'm an archaeology grad student with an interest in gothic archaeology, tragedy tourism and dark sites. Most of my friends don't appreciate my interests so I've taken it into my own hands and I'm going I've established this blog to chronicle my solo adventures and hopefully give you a look behind the scenes at cultural heritage and the local arts.

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