Friday, 29 July 2011

Manual for a Mechanised Man - Book 1, Entry 2 - Self Worth and Identity

I don't know how to describe myself. And I have even less ability to describe who I am, intrinsically. Trying to do so, at this stage of my life, I suspect is essentially a futile task and so I will turn my mind to other matters about which I have more to say.

Up until the last few years, I was in the closet, so to speak, when it came to many aspects of my disability. At first, this may sound like an odd description given that, as I use an electric wheelchair and, physically, it is obvious that I have some type of affliction, I nevertheless have gone to great lengths to hide or excuse or otherwise explain away those aspects of my disability that I could keep hidden or divert attention away from.

To understand why I have done this, and in some respects continue to do this even now, requires that you appreciate that I have always seen myself as living in two separate worlds or realities simultaneously, but ‘fitting into’ neither.

On one hand, like Pinocchio wishing to be ‘a real boy’, I have spent my entire life trying to live as ‘normal’ as possible. This is not a bad thing and I don't regret this, I wouldn't change it, but invariably tensions arise inside myself when there is a conflict between what my mind wants me to do as a ‘normal’ person and what my body as a ‘disabled person’ is limited to doing, which, obviously is far less than what an able-bodied person can physically do. On the other hand, I know I am significantly disabled but, as most who know me well could witness, I have always felt extremely uncomfortable around other people with significant disabilities, especially those in wheelchairs. One doesn't have to be a genius to realise that I find it confronting to be in the presence of ‘others of my kind’.

I guess a lot of this aversion goes back to the many stays in hospital that I had as a child and the feelings of helplessness and powerlessness I would experience especially when I was having painful surgical procedures. I would look at other children around me who were perhaps in a worse state physically than I was and I would tell myself that I would escape back to my home, my family and friends and my ‘normal’ life eventually and that I would never end up in the condition that I saw some of those children in. It should also be noted that in the late 1970s and early 1980s childrens' hospitals, at least in Sydney, were very dark, drab, foreboding and ominous places. They were not the child-friendly places that many are today in Australia.

Early on, I think I was able to get through a lot of these traumatic experiences by differentiating myself from what I saw around me. I would keep telling myself that I wasn't like the other children. I never thought I was better than them, I remember seeing some children cope far better in this situation than I did, but I would continue to tell myself that it wasn't that I had a disability, my problem was just that I couldn't get around too well; a subtle, but important, distinction at the time.

And so, right back as far as I can remember, I knew I wasn't able-bodied but I didn't feel as though I was ‘handicapped’, as they called it then, insofar as it didn't separate me from the rest of my peer group. Right from the earliest days, I had ‘normal’ friends, I went to ‘normal’ schools and I liked to do ‘normal’ things other boys my age liked, even though I would sometimes need to do them in slightly different ways.

As I got older, and into my teenage years, I began to feel very much like I was a tourist in both worlds but a citizen of none. By that stage I could no longer deny my disability because I began to realise that although I could continue to ignore it, or work around it, or minimise its impact, other people couldn't or wouldn’t do that sometimes - but it was always me who felt the sting of this.

Little by little, I noticed that people would stare at me. Often times, people I encountered would assume I was mentally defective before I had even spoken to them. I found that a great deal of the world around me was off-limits, counters and racks in shops were too high to reach unassisted and many of the buildings were inaccessible - even in my own school. Sometimes, kids who didn't even know me would call me names and then run upstairs if I tried to confront them to taunt me more.

All of this, and numerous other examples I could cite if I wished, solidified in my mind that the more I could hide my disability, the better my life would be. The futility of this should already be apparent, but it didn't stop me trying; and part of me continues to do this even now, more than 25 years on.

Around the same time, aged 10 or so, I began to realise that people weren't sure how to react if I showed emotion and became upset or angry about being the way I am. As an adult, I understand why; but I couldn't when I was younger. I understand now how difficult it must have been to try to console me at these times because there wasn't anything anyone could do to change matters for me. Yet, I was too young to really appreciate or understand that as I do now.

Nevertheless I think that that around 12 or 13, I genuinely was able to make peace with the fact that I couldn't run or play sport and things like that. I would get upset, for example, during mandatory physical education classes when the teachers would ignore the fact that I was there. I was known to be disruptive in these classes and I developed my acid tongue during this period but my indignation arose not so much because I was unable to physically take part in these lessons but because I felt offended that these teachers never attempted to offer me an alternative activity or involve me in the lesson, perhaps in an organisational capacity (for example, timekeeping). I grew to resent being ignored.

On the whole, however, I never shed many tears beyond about age 13 over activities I was prevented, by my own body, from participating in. Yet, there was a growing awareness within me that the world was not designed for people such as me.

I also began to sense a growing pressure to contain my feelings, to not lash out when teased or become upset if overlooked. There seems to be a stereotype of ‘the super-cripple’ a term which I abhor as the ‘C-word’ was often a term of derision hurled at me on the schoolyard - I liken it to the ‘N-word’ when used to insult people with darked skin colour. The ‘C-word’ has such a powerful effect on me that even now, if used innocently enough in conversation, I will give a warning that I simply cannot tolerate its use, and if repeated I will have nothing further to do the speaker evermore, no matter who they are. In a sense, I guess it is my bottom line, it is that point where words become weapons and it is a boundary that I cannot ignore if violated.

Anyway, this term is something I have seen used by other disabled people to describe this same phenomenon. I am not the first person to notice it or attempt to describe it. There is societal pressure to stoically accept one's disability, because I guess that makes life easier for those who interact with disabled people.

Whilst stoically bearing all manner of burdens with good cheer and unflinching optimism, the ‘super-C’ should then go and conquer all manner of obstacles whilst serving as an ‘inspiration’ to all non-disabled people who cross their path. One might even get to be interviewed by Ray Martin! Or at least that is how it is supposed to be.

I think, personally, this stereotype comes from the same mindset as the ‘super-Mum’ stereotype where younger mothers are supposed to be all things to all people; working full-time, staying fit, remaining socially active as well as spending time with the kids and the rest of the family, keeping a full study load, growing award winning roses, baking prize-winning scones and being well-turned-out 24 hours a day, and a nymphomaniac.

I don't see the ‘super-C’ ideal as inherently bad, in fact it is far more desirable than the idea that all people in wheelchairs are a waste of space and should be hidden away from the world, to hopefully die at an early age so as to not bring too much shame to their families (as was the prevailing view as recently as about 100 years ago or even less). The trap is, I think, in believing that you will one day achieve that ideal. It is a race without end - like the term ‘success’ is - and it goes on indefinitely because whilst ever you try to achieve this goal it will always remain out of reach, as there is always more that the seeker can do, there are always things yet to achieve.

I tried throughout my adult life to exceed my physical capacities or limitations where possible, but I got stuck on the treadmill and I became a slave to my own ego and vanity because I was not able to accept, or even recognise or at least intuit, that my body was slowing down in its fourth decade. In my mind, I only had one piece of the puzzle left before I could allow myself to accept that I had made something of my life. I had my own ideas of what a normal life was, but the more I reached for it the further I pushed it away.

I had been too caught up in the same fallacy that in earlier times I would have chided others for placing at my feet. All around me I kept looking at other people and trying to compare my life to theirs. The more I did this the more I seemed to buy into the bullshit that I used to resent so much when I was growing up when people kept trying to pigeonhole me according to their own preconceptions.

I can't explore this thought any more at this stage because there is significant interplay between it and concepts around masculinity and sexuality in the disabled context which I will discuss in the next two entries, but the point I am trying to make at this stage is that central to my own self-image was the idea that I could only have a worthwhile and, therefore, happy life if it was built upon what I called the four pillars - independent living, successful career, healthy social life and a stable and mutually satisfying relationship with a woman I knew loved me.

More or less, I felt that I had done enough to solidify the first three of these pillars but the fourth one was always elusive. Always just out of reach.

And so I was never satisfied with where I was in life and I was always off chasing rainbows. Although in no way seeking to try to put the blame elsewhere, I guess I bought into the Hollywood ideal of what romance should be. I always thought that the right speech at the right time could melt any girl's heart, but life just doesn't work that way as I found out. Often.

The error I made was offloading the responsibility for being happy and feeling of value onto someone else and letting their decisions and choices influence not only my present state of happiness and well-being but also whether or not I was even worthwhile as a person, or indeed had any value at all.

And when it came to questions of validity, in a personal sense, my world was completely redefined when I learnt at age 30 that my neuromuscular condition was almost certainly caused by a genetic mutation and not, as I had always believed, a result of damage caused in utero by a virus or other illness my mother suffered whilst pregnant. We, as a family, were surprised by this news. A non-genetic cause had always been our understanding, based on sound medical opinion, up until about 6 years ago.

For me it was far easier to believe that I had been attacked by some virulent strain of bacteria or something than the thought that the very essence of my being, my DNA, was corrupted, however slight or contained this anomaly may have been. This was a momentous shift in my worldview. I still struggle at times to come to grips with the idea that the very map that built me was error-riddled. I hope that this arose spontaneously and will die with me, making these entries unnecessary. Yet, unless and until I can obtain a definitive diagnosis I will be unable to know with confidence that this condition won't occur again in future generations of my family.

I guess the older I get the less harshly I am judging myself. Like everyone else, I came into the world with nothing and did the best I could with what I had. If I could do my life over again but could carry one message or one idea back with me for a second incarnation it would be this, I suppose: I shouldn't make my happiness or self worth contingent upon someone else falling in love with me; no one else should be given either the responsibility or the power to raise or determine my value as a man. The more I hoped or wished for a woman to find within me something deserving of love, the more eroded any such qualities became, if they existed.

Somewhere along the line, I seemed to lose my authenticity and instead became somewhat of a chameleon trying to be whatever it was that I thought the object of my affection at the time was looking for. If you do it enough, you can lose your connection to your real self. When that happens, you've sold your soul for an unrealised dream.

It all makes sense now, I see it clearly. I'm sure people probably tried to tell me this, those who had some idea about how I saw myself. Sometimes it is extremely difficult to extract yourself from the many mental treadmills we put ourselves on. They use up a lot of energy, but you never seem to get anywhere.

The one thing that I felt I could rely on was my intellect. It has always been my one oasis in an otherwise barren desert. In an ocean of inferiority complexes, that was my one sure, safe port. I am obviously nowhere near as smart as I sometimes thought I was; I simply have a good memory and a knack for writing. I am no intellectual giant, but I am not a mental midget either.

I have three university degrees, all in law, and I take some pride in the fact that I qualified as a lawyer. I have worn this as a badge, a signal to outsiders that despite my physical deficiencies my intelligence has not been stunted. I also wore the fact that I lived independently, and could care for myself, as something of a shield against those who, without even knowing me, were sure I must need an army of carers or lived in an institution.

Now that I no longer have my independence or am gainfully employed, my defensive arsenal is now severely depleted. I really struggle with defining myself in this new paradigm. I keep coming up empty because my dependence on others means I have lost many of the trappings of adulthood.

Although I am finally starting to know myself in a way I have never been able to before – and this has brought me a previously unknown peace of mind – my present circumstances have created entirely new questions and reanimated some very old ones which I thought I had killed off in childhood.

I am no longer solely responsible for my own activities. More correctly, I no longer am the sole determinant of what I can and cannot do. I can't seem to get used to this, it is as if my personhood is rejecting this new reality similar to the way a body can reject a transplanted organ.

All sorts of borders and boundaries have become opaque. I think of Sigmund Freud's quote often that “sometimes a cigar is just a cigar”. What Freud meant was that not everything, always, has a hidden meaning; in Freud's case, he believed most forms of human behaviour arose out of, and because of, deep, underlying and subconscious sexual desires. However, he recognised that occasionally, sometimes things are as they seem. Sometimes a person merely smokes a cigar because they enjoy smoking it, and not because it represents some sort of phallic symbol or primal urge.

In my own case, I am wrestling with properly categorising various statements made to me from time to time and I know I often over-analyse their meaning. For example, if a family member suggests I rug-up before going outside into the cold winter air, or that I remember to go to bed at a reasonable hour because I have to be up early for whatever reason, I invariably find it difficult to interpret these messages and deduce whether or not they have any hidden meaning.

Are these suggestions merely good natured comments that people who care about each other make for no reason other than care for the health and welfare of the person concerned? Is it something everybody says to one another to show they care, and I am only noticing it now because I've become oversensitive? Or is it more troublesome than that?

Are these comments a threat to my individuality? Is there reason to be concerned even if the intent behind them is innocent and genuine? Am I in danger of succumbing more and more to benevolent paternalism, even if this happens as an unforeseen by-product of ordinary familial care and concern? How do I ensure that I maintain my identity as a mature adult whilst at the same time surrendering more and more of my independence as my physical strength slowly dissipates? How best can brothers and sisters and parents and offspring coexist as adults and equals without inadvertently reverting to the traditional roles of earlier years?

Of even more importance, I am still in search of an identity reflective of my present circumstances yet encapsulating the better parts of the person I was prior to my ‘fall’. This is not the first time I have needed to reinvent myself, but do I have one more avatar left?

When I was three or four years old, I had extensive surgery to my hips and spent many months in plaster from about the knee to be armpits. I awoke from surgery as a different person, quite literally. I am told I was more or less the same in terms of personality as I had been prior to surgery but I went by a new name, Eddie. I refused to acknowledge my real, birth name and steadfastly stuck to my new identity. This was more than merely a childish game, I appeared to genuinely believe I was this person – Eddie.

I persisted with this new identity right up until the plaster was removed – indeed, I still own children's books which were inscribed ‘to Eddie’ because I would not have accepted them unless they were given to me under this second guise. I am told that once the plaster was removed and placed in the refuse bin, I bid farewell to the plaster with a wave and announced that I, my real name, was back.

This was obviously a case of dissociation brought on because of a traumatic event as a way to compartmentalise and then discard memories of a period where I was in significant pain and severely restricted by plaster.  Although this has never been repeated, I do retain the ability to disengage myself from a situation should I wish it.

Last year I spent six or seven days with my neck in traction and I remember nothing of it other than the first hour or so. I can think of several other occasions where I have been able to function as if on autopilot, but then retain no memory of doing so afterwards. I should clarify that in all cases I have done this in response to physical pain only.

The fact that I am able to control my mind in this way allows me to think that I have the resources to get through tough situations. I am inclined to think that everyone is so equipped; one just has to know how to turn the volume down on the outside world.

Perhaps my story is unfolding according to some great, unseen plan. I doubt it, but maybe there is a reason for why things are as they are. It is not inconceivable that everyone's challenge in life is to interpret their nature to themselves (to borrow an idea from Sir William Deane). I hope that by sharing thoughts about my own personage, this may help someone who is beginning to think along the same lines as I have.

My warning, though, is against believing others necessarily see life in the same way you do. The risk you run is that after you’ve thought out, compiled and codified your own personal rules of the game – life –  with your own convoluted and rigid logic, you may find yourself alone on the oval because what you've created is either incomprehensible (because no one's a mind reader) or otherwise too troublesome to bother with.

Put another way, it has been my experience that people are more willing to accept you if you are honest about yourself and your capacities. Once you start to hide things about yourself or refuse to acknowledge your own personal realities, whatever they are, you are on a slippery slope and it takes increasingly more effort and mental energy to keep up the charade but eventually it will all start to crumble.

In the end, you don't need to perpetually recite your litany of failures and failings; I am not advocating self-flagellation or public confessions. I am simply suggesting that it has been my experience that if you can retain or rediscover your own authenticity, you are well on your way to… wherever it is that you want to be.

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