There are many ways to describe intimacy. For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy. But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”
I have begun using the term loosely and am still realizing different aspects of it. This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape. I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability. I think Access, as a framework, is powerful for so many of our lives. Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy…
My friend “A” recently completed her transition. We first met nearly two years ago when she was still a he, and had come into the store looking for books on gender identity and sexuality. Previously I’d only ever met one other transgender person: the recently reassigned husband of a man I was in hospital with. Given the strife this had put on the latter’s marriage I was (and remain) impressed with the confidence and candour with which A is able to discuss her experiences.
It would be idiotic of me to claim any expertise on this subject. For any true insights into the lives of transgender people and their loved ones, I heartily recommend gendermom – a mother’s blog about life with a trans daughter. For my part I have to wonder about my comfort with this issue. I come from a working class background lacking what you’d call progressive ideas around status, race, identity and sexuality. I’m confident that my family members who denounced blacks and faggots would struggle to even grasp the concept of someone born into the wrong body, even struggle to devise suitably offensive epithets.
Unfamiliarity breeds contempt. Contempt, suspicion, fear…a whole litany of negative responses. As kids we’d belittle and tease one another by calling each other gay. Its a cultural thing, and as with prejudicial attitudes towards the mentally ill, its likely to stem from a lack of contact with, and questions raised by, people of certain dispositions.
The Brothers Hitchens queried the validity of the term ‘homophobia’ on several occasions – stressing that a more literal reading of the word’s etymology is “fear of the same” as opposed to fear of homosexuals and homosexuality. Dear departed Christopher would run with this theme, noting how often homophobia rises from a doubt and disgust within the homophobe. Spectrally such doubt and disgust is common in transphobia and psychophobia – if their gender identity could be misaligned, what about mine? Could I hear voices too?
I often come back to a long ago conversation with my aunt. Mass immigration is a hot potato in these parts, and she was bemoaning the number of african families moving into the area. ‘I want ’em out’ she told me, ignoring one particular irony – one of my families’ best friends since my uncle’s 70s childhood is “Black Tony.” I pointed this out to my aunt. ‘Oh that’s different. That’s Tony.’
How would things be if we had “Gay Tony” or “Trans Tony” or indeed “Schizophrenic Tony” in our lives? Everyone in my family knows my story and diagnosis, and yet its all wary eyes and awkward shuffles when the topic comes up. Even as a simple statement; a matter of fact in a conversation, with all the emphasis and drama of someone announcing their transition from full fat to semi-skimmed milk.
Perhaps some would argument that because mental illness can have fewer, conspicuous traits (for example mincing or removing your dress and becoming a bricklayer), its harder to get a handle on, and know how you’re “supposed” to respond. Everyone gets depressed, but not everyone dresses like Freddie Mercury, so demarcation is complicated.
An obvious solution to this is to treat us like people. Easier said than done, but once the step is made positives aren’t hard to find. Young couples like Jamie Eagle and Louis Davies, Arin Andrews and Katie Hill are cases in point. These news stories don’t invoke the spirit of the freak show – sure they’re curiosities, but the emphasis is on people finding themselves and young love.
‘In May 2010, Jamie was diagnosed as transgender.’ This was the only part of the Mirror story which made me wince. The ‘D’ word. I’ll admit I have developed a particular sensitivity to clinical terms used in certain contexts – maybe Miss Eagle’s eyelids wouldn’t bat at all. Language assails us in different ways, and I immediately recalled how the Blessed APA no longer consider being transgender a mental disorder.
Curiously another part of this story drew my attention – the couple are from Bridgend County in South Wales; a part of the country regrettably known for its high suicide rates. I’m not drawing any connection here. I mention it because, as part of my own particular disposition, I see patterns and peculiar associations everywhere. Bridgend was a place I used to pay special attention to.
That this was the only negative I could find in the piece – one drawn from the quagmire of I – is a source of something approaching optimism and reassurance for me. Some kind of signal that our culture isn’t collapsing in on itself; folding into something rancid and inherently dismissive of the rights, needs and simple truths of the individual and those important to them.
Shouldn’t it be the easiest of questions to answer? If they gave you a pill, if transcranial magnetic stimulation works or some new gene therapy could cure your “disorder”; would you accept it?
Yes is the obvious answer, as far as any “sane” or “rational” or “healthy” person would have it. The reasoning behind this is obvious and with some validity – mental illness tears at the fabric of society, it destroys lives. It kills.
Why can’t I just answer yes? A friend of mine once told me how much she hates my scars, how she hates that pain was caused and that they were required. She also noted that I wouldn’t be the person she loved if I hadn’t lived through all that. Maybe that’s what she truly dislikes – that parts contributing to someone she values were born of misery and chaos.
I can’t answer yes. No. No I’m lying. Yes. Yes, yes yes. YES. In my darkest times I wanted it to stop. ‘It’ was so many things. Fear, uncertainty, misery, pain, loss. More besides. Anything I could try to cut out or ethanol-cleanse or suffocate at the bottom of the Roding.
The interesting question isn’t whether I would have such a treatment today, but whether I would have then.
In The Pits and the Pendulum Brian Adams highlights what he considers ‘manic-depression propaganda’: adding names such as Einstein, Coleridge and Alexander the Great to “our” pantheon. The only stories I ever read about paranoid schizophrenia in newspapers detail failures of hospital administration and the inevitable murdering resulting from it. Black and white thinking saturates the question of mental health on every level, in a dizzying array of permutations.
For my part I cannot recall any upside, nor any down. There was only the maelstrom, punctuated with moments of relief and release when I thought it was over or the torment had been tied off. Contemplation of any benefits of my condition were impossible, not because my mind wouldn’t have been open to such heresy, rather it was otherwise engaged.
I wrote a hell of a lot of bad poetry back then. Wrote a lot of awful songs and failed to play them on my guitar. Writing has been a constant throughout my life, but back then it had to happen in bursts. Narratives or long tracts like this one were almost impossible, contributing to my collapsing academic standards. Perhaps my point is that any creativity I had wasn’t birthed or enhanced because of my crises, simply that the flavour of it had changed.
When was I diagnosed with depression? An SNRI was prescribed at some point, which I find curious in retrospect. ‘Suicidal ideation‘ came later: dying was a practical consideration. A demarcation was under construction between myself and a world opposing me on principle. Incompatible.
Things were happening to me and from me. Any revelations or revolutions in me were carried on shockwaves, and if there have been any benefits their emergence relates to these shattering blows. The same way you blast precious minerals from the earth.
No safety protocols. Imagine if you will an accelerating train; brakes failing, wheels red from friction, the whole mechanism groaning with metal fatigue. Disengage any “sensible” prejudices you may have around the fear of pain, the fear of death. When the wheels buckle and the rails yield and you are carried off the mountainside. The contortion of colours and shapes, new sounds and unimagined sensations.
‘Reality is a postage stamp‘ musician Katiejane Garside once told us. J. G. Ballard claimed a debt to the mentally ill and was himself denounced as ‘beyond psychiatric help‘ thanks to the manuscript of Crash. Shanghai Jim took it as a compliment.
If the propaganda folds and we’re not all murderers, perhaps what we find is a neutral shift in perspective. As social animals bound by the laws of natural selection, we have to agree on certain conventions in order for our continued survival. The model falters however, because all thought is infinite and our awareness of this fact is too much to handle. Finding ways to co-operate has helped us thrive as a species, but knowledge of its cost undermines the remarkable gifts nature instils in us.
I recently read a paper published in Molecular Psychiatryback in 2008, accusing a gene called diacylglycerol kinase eta (DGKH) of being complicit in the onset of bipolar disorder. Statistics were never my strong point so a great deal of the article was lost on me, but the focus on ‘risk alleles’ and ‘polygenic disease‘ was interesting, though seemed to somehow miss the point.
An engine is very useful if you maintain it. See to its needs and it’ll take you where you want to go. Ignore it or push it too hard and its breaks down. You might swear at the car when it fails to live up to your expectations, but you don’t fix it by restricting its component parts.
This is an emotive analogy, courtesy of someone fearing an extinction event. ‘In a completely sane world, madness is the only freedom.’ Ballard again. Potential methylation of this proposed epigenetic, polygenic complex will sterilise people like us. Return us to a statistical norm that the Holy APA cannot actually quantify.
I can’t say I consider myself special, and maybe I hinge too much of my sense of self on identification with the Mad community. But conversely aren’t researchers similarly hinging too much on the existence of a disease and the possibility of a cure? Approaches on either side will inevitably suffer from ideological taint – participants in the aforementioned study were drawn from the US Department of Health and and Human Services, the National Institute of Mental Health and the Brookings Institution’s Center on Social and Economic Dynamics; arguably institutions with a vested interest in the biopsychiatric model and its social implications. The test samples came from subjects and controls who’s suitability was judged according to DSM-IV criteria, which is always reassuring. The paper also notes that similar, albeit larger genome-wide association studies are only possible thanks to organisations like the Wellcome Trust; which was founded by a pharmaceutical entrepreneur.
I have to acknowledge my own biases, and it’ll be an interesting day if irrefutable scientific proof of the biopsychiatric model emerges. Yet I still cannot shake the idea that just because bipolar disorder may have a genetic basis, it wouldn’t be proof of a disease. I’m not a anthropologist and I’m certainly not a evolutionary biologist, but I can imagine certain evolutionary benefits to mental “disorders” which arguably retain their value.
My experiences of depression: an intense focus on ills to myself and a sensitivity to those of the world. A warning sign, a pain response. Bipolar disorder: creative leaps and unique problem solving, married to an intense motivation to leave the cave and cross the valley. Here we share the depressive sensibility; both as a consideration of our situation, but also a crash dynamic – our bodies and minds slowing down in an equal and opposite reaction to the manic impulse. Schizophrenia: hyper-real processing of the world around us, drawing out the inward significance of who and what we are. An attempt to emphasise the individual so we do not stagnate.
I talk to the voices in my head, sometimes telling them to shut up, but more often than not as part of a dialectic. This post owes much of its content to a late night of augmented energy levels and accelerated thinking. Patty Duke, echoing an apparent trend amongst manic people, emphasised her ‘incredible command of the language,’ while a patient of Darian Leader’s remarked: ‘the right words were just there, I didn’t have to think anymore.’ Right now, as I feel myself ascending yet again, I know exactly what they mean.
My answer is no. I can’t say I’d want to be “cured.” I won’t speak for everyone. My rights are restricted to what I feel and what I believe. Science is not the enemy. The spiritual isn’t irrelevant. All we can work with are the qualities we have and the ways we work with them in kind.
One of my worst memories, one of many, was the look on my brother’s face when he came home and found me bleeding on the bedroom floor. I’d had what you would call a manic episode – possibly a mixed state – and pursued a resolution with a razor blade. I was in shock and my arms were entirely red, and I don’t think I’ll ever recover from his expression.
During my frenzy I’d done what any respectable maniac would. I daubed “We are 1” on the desk in our room. “We” is a critical word in my universe: you’ll hear it slipping in while talking to me, especially during moments of pressure or acceleration. I have used it consciously in the past, as a way of aggravating or unsettling people; but for the most part it is an involuntary response.
Its increasingly common as I get older. Paradoxically this may run in line with my increasing confidence and sense of self. I often mention how I am the happiest I have ever been – the best even. Part of this maybe down to perspective. My capacity for objective thought has greatly increased over the last decade or so, and while this sometimes leaves me cold with diminished empathy, it means I’m no longer so in thrall to my emotions.
“We” these days has a stability to it bleeding little me couldn’t have imagined. It’s difficult to put into words. Its almost a quantum state: imagine turning your face away in reaction to something upsetting or disturbing (for me this is often a memory). You close your eyes and feel the pull for your skin as your head moves, but at the same time you’re conscious of still looking ahead, staring wide at the offending image. Sometimes I’ll cast a beady eye at something and feel like there’s another two faces mirroring my actions. I have back-up, reflections at a remove.
I described similar sensations in one of my earliest posts. More evocatively perhaps, though with some degree of failure. Many people from my offline life, couldn’t (or wouldn’t) acknowledge that I was being literal. These are physical sensations, psychosomatic manifestations running the length and breadth of the extreme states people “like us” experience.
I will acknowledge the possibility that is an experience familiar to everyone. If so, what’s telling is that I consider it a possibility, rather than knowing for sure, and that I’m writing about it so plainly.
The voices in my head follow a similar pattern. Invasive is the term I suppose – a detached comment or suggestion obviously born of my own subconscious, but also at a remove. When I get overrun it’s usually in bed as I’m crossing the Styx between waking and sleeping. I’ll thrash around, grimacing and contorting my body into all kinds of strange configurations. Just trying to get some fucking peace.
Often I’ll take on the voice itself. Again the experience is difficult to spell out. Sometimes I close my eyes and, opening them with a fiery intensity, I’ll hiss out a response to my thoughts or whatever is happening around me. I often hiss at people, especially if they’re irritating or offending me in some way. Confusion has been caused by my vocalising responses to something raised in my mind – I recently replied ‘Yes’ in answer to a suggestion which popped into my mind, during a conversation with one of my colleagues. ‘Yes’ wasn’t an answer to anything said in the “real” world conversation.
To my shame, what I’m hearing isn’t always pleasant. Refracted thoughts have been of a violent nature, usually directed towards people I feel have crossed me, for reasons dramatic or quite banal. These are contextual as opposed to state-specific: they’ve emerged under manic, depressed, mixed or neutral conditions.
Everyone has violent thoughts, especially centred upon retribution, but I can’t speak for others in terms of the psychological reinforcement they receive. ‘Do it’ pops up, ‘kill him’ is another; nothing too original. Sometimes its a whisper, sometimes a chorus crams every syllable into my cranium. Some in opposition to the others, which I take as a very encouraging sign.
Voices have helped reinforce altruistic behaviour. Countless times I’ve walked past a homeless person before ‘go back’ encourages just that. Sometimes I’ve been talking to someone and something will note a curious tick in the other person’s expression or voice. From here I’ll turn my attention to the other person’s well-being, many times unlocking and assisting them with some personal concern.
This is proving to be a very difficult post to write. Despite knowing that majority of people likely to read will be sympathetic to such experiences, we’re talking personal and pretty darn fucked up stuff. I’m compelled to note that I am not a slave to the voices I hear. They are not constants, rather they are amongst the most blatant manifestations of my complicated psyche.
Of course Darian Leader has something to say about all this. Describing a psychotic patient of French psychoanalyst Charles Melman, Leader writes:
But who, Melman asked, was speaking? The young man’s response was categorical: ‘It’s my neurones,’ he said. ‘It’s my brain, I know that it’s me,’ and then he asked, ‘Can the brain be divided?’ Even though he was admitting his self as the locus of the phenomena which had invaded his life, they were still designated as external, as coming from the outside, in the form of the split brain.
At a push I tend to see myself as fractal, reflective, prismatic. That I ended up with a diagnosis of bipolar feels coincidental almost to the point of orchestration. Since I was very young I’ve been fascinated by divisions, by altered states and either side of the coin. When I was 11 I loved the fairly dreadful Batman Forever, especially Tommy Lee Jones rendition of Two-Face.
I was fascinated by split personalities – the idea of multiples within a single skull. To this day I have dysmorphic sensations – I often picture and feel deep scars running across my right eye. Scars I haven’t crafted snake across my right arm (always the right; I’m a working southpaw). I wonder, as I felt very isolated as a child, whether or not my aspects were gestated to alleviate my loneliness.
One figure I recall was Dark Ryan, or simply Dark. Back in 2001 he returned from my childhood; not as an adversary to my derivative superhero alter ego (Super Ryan – ha!), but as a fairly accusatory presence within my disintegrating mind. His was a label; if its one thing I do not have it is multiple personalities. Naming and distinguishing my complexes seems to be a psychotic function of healing for me. Engaging them as entities, even pale ones, makes them easier for me to comprehend.
Now that I’m older, I’m tempted to say that these distinctions have taken on a far more satisfactory bouquet. The positives are accentuated and the negatives seen as necessary shades. Is this not reflective of the Icarus principle of “dangerous gifts?”
There’s one thing you need to know about me:
I am obsessed with the X-Men.
Superheroes make use of their talents and typically possess abilities beyond the scope of normal people. The best superhero stories reveal the conflicts inherent in these conditions, and few comics do it better than X-Men. The other fact is that X-Men is about finding your place in a world which doesn’t get you at best; and hates you for your differences at worst.
My brother and I created our own superhero pantheon when we were young, though I guess it percolated a lot deeper into me. That I am also Cause Catyljan is no accident – it is my identity but not; myself by design but not independent of my “true” self. ‘Catyljan’ has a very specific meaning for me (and nothing to do with Catalonia), which I rather relish keeping to myself. ‘Cause’ leans on its dictionary definitions – as a noun I focus on it as a basis, a foundation, a starting point, a root; as well as a principle, an ideal and a conviction.
In this moment my mind is clear and calm, focused on the words you’re reading now. One reason I refused to take the olanzapine Dr Sri prescribed (other than it melting my internal organs), was my fear of being without my delusions. These idiosyncratic characteristics without which I would not be me. A 29 year old lionising superheroes may be sketchy; a person philosophical about their madness may “abhorrent,” but this is curve I am on and We are not afraid.
I remember at a party, a couple of minutes into conversation I mentioned my psychiatric diagnosis. Their curiousity seemed to wane. Recently, I listened to Sera Davidow on Madness Radio on the Politics of Language, she also surmised that disclosing a diagnosis :“So often that cuts off genuine curiousity about that person”1. I could relate.
I remember in hospital someone urged me to : ‘diagnose myself before they do’ . Looking back, it was a warning. To claim who I was before my identity was taken by ‘the other’, the psychiatrist, and boxed off into a convenient category. I’d wanted to get ‘Skitzoid Youth’ tattooed on my upper arm, in a way to reclaim it for myself. Eventually deciding against it as that would reduce the whole of my twenties to what ‘they’ reduced me to. There’s a certain anger that comes with it though, with the urge to get branded…