Of course I’ve edited nuances in this to buggery since first posting. Fleshed out a bit to balance not sounding so precious in the experiences that I claim hurt me beyond an ability to bounce back. I handed in a second draft, but still feel like I sounded an utter sook who needed to toughen up. A good week later, I hope this version explains my position better –
I’m sure I’m able to provide access for this, and will make it more available in time. If it is a surprise to those involved to see this in the public domain, I trust they would want and appreciate having these words accessible should these be of assistance anywhere.
What follows began as the report for NZ CCS Disability Action Jubilee Trust funding, provided for me to attend an independent living conference. It is waaaaaaay far overdue, way too long, way too far up, um…, somewhere… I dunno how it will seem really, but I needed my experiences all tucked away on paper, ready to go onto some other focus. It was a curse, might not say much after all actually, but I needed my thoughts set out.
MOVING THROUGH THE PERSPECTIVES : A hesitation with various approaches to worldviews in the disability movement
I had been fortunate enough to attend Imagine Better’s Moving On : Success in Transitions conference at the Te Papa Museum conference venue, November 12-14, 2014. My attendance fees, airfare and accommodation was funded by the CCS Disability Action Jubilee Trust. I also utilised transport vouchers I regularly receive from the Cerebral Palsy Society. I apologise for the delay in submitting this, and if I’ve left questions as to how I regard and wish to honour the faith others have placed in me. I do, however, accept full and sole responsibility for what I have written.
Instead of a point by point outline, review and evaluation of the conference, I hope in lieu of such, the committee will accept that I found writing down my thoughts as brought about by the conference, more beneficial. I do apologise if this writing sometimes seems bereft of focus, but I did very much want to document what I have, and am grateful for the opportunity.
My writing does return repetitively to one circumstance in my life that happened years ago. Hopefully it turns out illustrative when readers can afford the patience. In my conclusion, I do eventually return to the more general and theoretical.
Please keep in mind that this is an informal opinion piece nonetheless.
Reintroduction and approach –
I had always known of these annual conferences, and the ones convened by Imagine Better’s predecessor, Standards Plus. I have worked on committees and personally associated with those acclaimed by the organizations. I have pored over reports written by such individuals most of my adult life – I used to come by such documents whilst visiting the disability resource officer at university for practical support – and could not quite understand the hype although I kept trying. Excitedly, I developed a relationship with someone very well served by the rhetoric, and I once cast many aspersions I had, further into my periphery. I felt a responsibility to regard the prevailing notions within the self-proclaimed disability community seriously. Past experiences and understanding have always left me pensive with the ideas past down to me via ensuing conversations, and indeed I’ve noticed personal fallout, behind the gloss espoused amongst those involved.
Despite fierce protestations that I’ve known amongst proponents of either the social model or the social role valourization model, both used like gospel for guidance in disability circles, I note a common denominator of both approaches. That is, the theme that people rely so much upon the attitude and regard of others for an individual to feel included and comfortable with their place in the world. For me, frustratingly, the social model makes an incredibly laudable first step in recognizing that social definitions crucially affect our lives. On paper I have felt it badly lets ourselves down by then implicitly encouraging implementation further to stipulate on how worlds should be constructed, even supposing what assumed universal values people should strive to instead – it does not leave an open-ended scope. The social role valourization model orientates around whatever is claimed as socially desirable and accepted too. It flies in the face of what I try to maintain as a theoretical biology student, that seeing life in terms of roles has pragmatic merit, but to restrict the way we see life down to functional roles, hinges so much on how much we apply a context, and the danger is not accommodating for when contexts shift, whether we notice the contexts shifting, not appreciating these changing, viewing through one scope when there is validity through others, being comfortable in allowing multiple perspectives.
Both perspectives have helped me personally here and there. I feel I can better see when I can just disregard what is a value laden perception from another that just isn’t worth worrying about. As a child, not feeling included sometimes, may have annoyed me, but now having an understanding of how that occurs, dismisses it. For me that makes all the difference. To be able to twig to why a prevailing notion might seem a little off, work through that when necessary, but largely discard the dross, is pretty much all I have needed. I maintain that my stance isn’t a roll-over-and-die attitude at all, or something afforded to me with my background circumstances, but the net advantage is in keeping myself relatively sane, calm, and then being able to concentrate and give with the peace of knowing that I have done things well and sustainably. That I have ended up getting things done, has apparently helped pave a way for others in the past without any fanfare, or so I have been told by people initially holding up obstacles. However, I feel I’ve been at the brunt of absurd amounts of anger, dogmatism and absolutionism for not kowtowing with features of the disability movement. It’s affected me profoundly in my life, beyond, what I too, would once have believed willpower was enough alone to get over. Now I have to be cautious with having memories of experiences inform me as I write this. I can find these damaging.
Unfortunately, I’ve known much of what I’ve mentioned above have adverse effects upon me by way of contorted extolling of the messages. An intimate partner of mine had been one of the keynote speakers at these conferences in the past, and among many behaviours I tried to reconcile with, in his address he said he had no one to love, felt a nothing, and that he did not want disabled people feeling worthless and unlistened to. This actually shattered me at the time with how I had never felt so down in all my life until our interactions, but thinking I had to be as tolerant and patient as I asked others to be of me, I continued making excuses to account for terribly conflicting messages. His claim to passionately understanding what devaluing can do to a person, was in contradiction to what he and I seemed to experience when together. He even said he felt like a toy, picked up played with, and then discarded at convenience.
It took me years later to learn about objectification, and a bit more of why I felt so gutted about hearing such a scorchingly ironic explanation from him of all people. Interactions really had left me in a mess. In retrospect, it could be put that I had to endure a hospitalisation, long term depression, and still a degree of anhedonia from younger adulthood while trying to understand a man so endorsed by disability circles, putting massive strain on others around me too. In our very last altercation, I was told that I was incapable of knowing what love was given my living situation, which I was acutely aware was a terrible drain at our age; and I was run ragged trying to make everyone else in my life feel comfortable, I was far too run down to not have those last words affect me as these did.
I had always valued independence, defied odds, ended up in places I was initially denied. But then I just could not make any sense anymore as I tried to be there for this man. I thought I must do the responsible thing then and opt out of life until I found out what was wrong. It was like I couldn’t give anymore. I wondered if I had to be as hurtful and as cruel to succeed, I was told these people were who I should be looking up to and emulating. It was the only situation in my life where I ended up feeling like I’d rather not exist, and yet even today, from some of that same quarter, it is reckoned that effects from elsewhere makes them feel utterly a blight that shouldn’t be. To explain what a relationship in particular did to me mentally and physically is very contextual, and words would just come out trite. I continue to draw out what is relevant as I write this, but I’ve read that as a stress reaction, people can run through such attempts forever with diminished ability to demarcate what infers meaning.
There have been others who I have been involved with from similar backgrounds as the individual who I claim affected me so much, and still others I’ve found to have known the harrowing dynamics themselves despairingly. I remember trying so hard with another I have loved who had sustained an adult head injury, I had refused to believe that his injuries affected how we interacted, and then I felt I should ask if I was as hard to manage with my own congenital brain damage. It was all hard as a young adult, with a lot I’ve grown through since, but that pivotal stage in my life suffered. As a whole, I have found it noticeable that many in the loosely termed disability movement have initially been very keen to have me share my life experiences. Interests mutually wane when I just cannot emphasize a rights and image driven push over what I believe I could broaden wellbeing. Rights and recognizing everyone as having value is said at least casually on occasion to subsume everything else as key, upon which all else is expected to follow. Normative notions on what inclusivity looks like start perpetuating, I think also, an exclusiveness.
At the time I was more affected, I felt for those caught up in the importance of trying to seem an ideal. I feel the push made it harder, if for whatever reason, they needed to take more stock of themselves. The systemics seemed to potentially be very cruel. I think it had presumed so much that we were so locked into a hostility to conquer in the first instance, and fortified the notion that absolutely nothing in society may well have suited us as individuals all along. What was espoused by the movement as I saw it from over ten years ago, was pitched as the sure salve. Situations raised were welcomed as issues, and melded to fit, thus openness and flexibility can be claimed. I could be embarrassed at proclamations of capability, only playing into notions that first a doubt was warranted. I saw derision smoothly dismissed, different emphases denied as having anything different that could possibly matter. Many are honest with attempts to understand others, but there can be a shockingly bitter few also. In 2015, I have seen a mellowing, but I believe it important to gleam all the lessons we can to understand ramifications of processes still at play.
A huge part of my life was always in developing a credibility with those in my life personally and in my chosen academic field. However, with my energies absolutely drained into somewhere else, particularily weakened by one individual, I had gotten to that point where I could not live up to anything I used to, and words can’t explain how frightening it was when it seemed the only responsible thing I could was fold and accept in some senses that I couldn’t cope in life, and not cope with how I grew up believing life could be. I had to allow those always assuming that I didn’t really have what they felt was needed, to take over again. The complications had me re-embroiled in the very circumstances I and my ill-informed peers understood the worth in having me depart from, I had just been building up to do so whilst retaining trust and a good heart for those who had stood by me so much.
It then left me utterly bewildered to face the prospect that maybe I couldn’t handle relationships at all, and that had always been a fear for me, the very one I felt I could keep privately away to myself and handle without worrying family until I had everything worked through so as to remain psychologically sound. Also along with the other men I got to know and more distant peers subsumed by the disability bravado writ of the day – obviously just a subset no less – dialogue had always left me as though something never was quite gelling. I was bitterly told I didn’t understand their anger, their struggle, and their pain. The one closest to me raged that I never had dreams, passion, and that I was dumb, clueless, dependent and sheltered. I found myself opening up about my past, memories I had already dealt with; the school doctor who said I belonged in a sheltered workshop, the teacher who told trainee med students that all persons with cerebral palsy couldn’t do maths, the years of arguing that I deserved a normal education, could go into science, didn’t need very invasive orthopaedic surgeries, the banker almost ready to ban me from having my own account. Yes, I’ve moreover encountered huge social challenges hemming me in more when growing up, but I was enthralled feeling all past that getting to me as an undergraduate. But every time I tried to contribute as my disabled peers at the time had asked me to, their apparent despair at something undefined and variable would culminate to exploding in a rage at me. Bit by bit, as I’ve said earlier mainly influenced by that one individual, I was being imperceptively worn down and unravelled. I could hardly string a full sentence together. For the first time since childhood, my exaggerated hyperstartle response as part of my cerebral palsy became prohibitive; the decay time was unbelievable, dizzying and frought. I learnt that my experience didn’t just boil down to being just different and easy to move on from.
Leadership, role modelling, proving oneself worthy of value and an example was what my friends absolutely insisted I obviously did not understand. As proof of success in front of me, it was asked if I was too weak and feeble to join in and be more like them. When a younger adult, nothing worried me more. I didn’t want the dogmatism, conceitedness and anger, but I felt horrible for being yet another one who didn’t take time to listen and reach out. We still had much in common, and involved in governance around resources we all need. How could I stomach the raft of very familiar messages at this conference, knowing what the messages could be used to fortify? All that recognised success is nothing when wellbeing has been stripped, and the mere capacity to feel, has become elusive.
Years past with other twists and turns before this present gathering at Te Papa, and I’m feeling I’m doing ok in life considering. I hope it is alright that I took the opportunity to attend this conference partly to habituate to the very setting that intensely signifies what once caused me so much grief.
Bob Jackson proved to be delivering exactly the kind of message I was trying to put aside all my reservations to hear. He is an adjunct professor in educational psychology and is involved with an organisation in Australia expounding social role valourization as a framework for social change. I must admit being a bit blurry with all of what I was being reminded of. I had always thought I could manage a trip away from home like that with some support – I once never doubted that for a second until I mixed with mindsets still all around me, mindsets on social acceptance and presenting great images for others to aspire to – there I was uneventfully, vaguely wondering about a herpetology conference there in the last week, and how I should really be up to speed for that type of thing. Jackson, the first keynote, got my attention with discussing how easy a statistical formula could be by changing the way it was taught. Jingoes! That used to be my mantra. But I was even more excited when this really was a harking about the plasticity of the brain. He even explicitly said there wasn’t really an argument why disabled students couldn’t necessarily be expected to achieve more academically than their peers. Moreover, he stressed that clumping students together in a class, all with low expectations, would only reinforce mindsets destined to be of poor outcome. As someone who first was put in a lower stream at high school, but then often was first in the whole form in some subjects, I could at least relate to always trying to see other rationale for decisions which didn’t quite gel.
I found considerable heartfelt irony in Jackson then referring to brain development and the appropriate encouragement of a particular biochemistry that nurtured memory, concentration, self-control. Of particular note to me was his specific mention of the frontal lobes and their development, and even the mechanisms which otherwise maintain a hypervigilance under stress which isn’t conducive to developing higher functioning competency. Setting down favourable neurological pathways requires an attentive mind ready to consolidate on learning. In my formal studies, frontal lobes, oxytocin and serotonin are huge players with my interests in social and emotional bonding in animals. Personally, with cerebral palsy, I have an exaggerated hyperstartle response that I worked hard at to manage as a child. I ended up pretty discouraged as an adult to have to learn habituation all over again after major stress in dealing with others proud to be from the disabled community. I can’t say how much I used to wish someone with credentials which might hold sway with them, would teach some of these principles.
The next keynote speaker was Patrick Swartz; someone involved in education of those with attention deficit related phenomena. I’m sure the messages are applicable to Asperger-like symptoms too, as well as just anyone when the principles are grasped. Distilled, I’ve known the thrust before was to take advantage and capitalize on high energy, impassioned characteristics. Forgive me for turning off during such an animated talk. The nonstop enthusiasm and self-assuredness in delivery was actually hard for me to stomach, once thinking that mattered so much in life too, but finding another way as I aged and seeing what a cover this can become for ones I loved – I had to just retreat while sitting there and keep myself safe. The message as it is fine; I’ve just personally found an exploration elsewhere more suitable for myself.
All I could hear were platitudes of how everything is possible just with application, and how fun and funny it was to sock it to naysayers.
I used to hold fast to my own truths to spur me on. Some are painful to recall in light of what these had meant to me, and it had hurt to try to convey how intensely I once bonded to these in the face of those who implied I had never contemplated these at all.
In this essay, I have tried to recall my own, and taken the opportunity to see if I could provide a list in lieu of gaining more from Swartz.
The most important ones to me were :-
- only I had the most complete understanding of myself and what I wanted
- I would only be allowing bad past experience to exert greater effect on me if I didn’t reconcile to move on with acceptance
- that it is a waste to dwell on what isn’t, rather than work on what can be from what is
- background noise from opinions of others will always be, stay above it
- that life itself had it’s own rewards
- there is no individual without a collective, and no collective without individuals
- independence is completely contextual, a state of one’s own mind on which to consider possible interpretations and understandings viable enough to have peace and a readiness to act and to keep taking in more of the world further inasmuch as possible in directions chosen
- one can only give the best of themselves to others, once independent inasmuch to not divert unnecessary focus onto what others still, only misguidingly think apply
- there can only ever really be an intimacy when knowing oneself enough to open up, and this includes not being confused by the opinion of others of what should matter
- oneself has to feel that in personal circumstances, they’re not just extending a love born of dependency
- that life is too short to be hemmed in sorting through the misgivings of others
- that not acting sets about it’s own range of contingencies that are chosen without as much awareness, perhaps, as the initially proposed choice alternative to not acting. This may entail as much resource and energy
- not acting may incur another risk of it’s own, and other difficulty
- the designation of positive and negative and what to do with that is one of definition, and one of who defines that
- it winds down to choice on what to grow from, and what not to dwell upon [at the age I first said this, disclaimers seemed unnecessary]
I suppose growing up I have always had it in mind that one day I would have done enough to start passing what I’ve learnt on. It seems a standard encouragement even more these days to be an example, a role model, a leader. At the height of my past and eroded success as a graduate ecology student, I was pretty much soaring with the classes I got into, who I was taught by, the training of my ability to mature and actually let go of loved preconceptions. I was so engrossed that what really propelled me more was that nothing could be understood without context, and with what I was learning about biological systems, trying to relate this to a pull I used to have in encouraging disabled youth, just seemed trite, impoverished and egotistical. There were points on context, social construction of observations, and the integrity of how a sense of interpreting in terms of an individual mattered, that I passionately wanted to impart. But, still, who was I to say what was relevant to another? Who was I to say how hard anyone else’s life was, and to imply that I know any of their struggles?
4.INTRUSIVE MEMORIES OF THE PERSONAL IN PRACTICE
When I met that individual very well-versed and well-served by disability rhetoric close to twenty years ago, I had started on graduate studies. Over time, trying to convince that I had moved on through life as far as I had in my own way, had made him relate as if I hadn’t been through any of my life’s struggles at all. He could erupt viciously at me for focusing in at anything else but perceived struggles instead. I could see immense pain behind that rage. I desperately tried to evoke what I could from my past to reveal that I was on his side. The oscillations between breaking through and the rages wore me down and unravelled so much of the past uncontrollably, I feel he just left after a decade of sporadic interaction, disgusted, thinking he had proved his point.
Up until that experience, I had long believed that I could will myself into anything. That I could simply remind myself of the platitudes above, that with a good cry and a sleep, I’d once again be at things with great gusto. It’s at such a point where I would ask it to be considered what it is like to hold the nature of the above platitudes dear, to want to share with another how you’ve arrived at similar understandings to what it seems they live by, and on alternate occasion, be subject to an explosive rage on how you know nothing at all. I’ve had lifelong difficulties from not being able to talk as fast or as clearly enough. As a disability leader, he was said to know my situation pretty well. The rhetoric of what has supported him professionally is said to apply to us like no other, it is said to be very against abuse, and understanding of the human need for intimacy. The world I had grown up believing I could always consult, also just seemed a desolate contradiction, all the while telling me it would be a support.
To be enticed in on the verge of communicative breakthroughs interpersonally, only to be next told, that I couldn’t possibly know pain, and struggle, and the worth of experience; to be told that I am utterly incapable; to have the nature of these platitudes fired back at me as if I couldn’t possibly understand, have no clue, and wasn’t worthy of their mere breath – on top of many other stresses we each had – had me become a shadow of myself. Again, my mind could not escape that this reactiveness was from a celebrated expert and leader in the disability movement who was all about giving disabled people more confidence, listening to them, and valuing them, but our association was in a personal capacity. It could be said that the relationship was just a failure as with many in anyone’s life. As we were both disabled, I thought I knew what it was like to have to be so tough. I wanted to reach through that bravado – I remember first being honoured at the maturity such negotiation of the toughness gave. I confirmed more formally later that when people get closer, they increasingly can trust leaving their vulnerabilities open with the other, and in doing so, enrich more fragile aspects of themselves. I’ve learnt that with such a wounded man, opening up for him is just a source of pain.
Moreover, at such a stage of closeness, and intimacy I’ve seen a handful of people get into defensive attack mode, shielding themselves, but with no regard for the vulnerable position the other partner has concurrently put themselves in. Instead of the gentleness required, such chaos can affect the responsiveness of neurological systems after a prolonged period. Platitudes and worldviews alike lose all meaning, emotional responsiveness gets all confused, I feel I lost emotional capacity for years later. I had lost all trust in my decision-making. I lost analytical skill. I could not concentrate in my studies. Without feeling, how could I possibly know what I really wanted? Motivationary platitudes since then had become a cruel joke and triggers of painful recurrent memories I couldn’t endure in public. I was too scarred and scared to explore my independent living after that. My worst fear was becoming as bitter, and in treating others as I had been treated. The world was just not making any sense.
Keeping at things, and working things out through practice, just wasn’t mentality or physically possible for me anymore. Neither could I tell what would just be creating more damage. It wasn’t like I hadn’t experience at really pushing myself, but that according to some, was what it looked like.
5.OUT OF TOUCH?
Experience drawing from a lot of my disabled contempories and myself has shown me again and again that a fighting spirit, and one of not giving up, can be so unhealthy in adulthood. I saw people get want they want, so proudly thinking of themselves as not giving up – but wracked and wrought in private, hurting others, subduing their own capacity to take in just so much of life. I still find people completely at a loss about what on Earth I could mean in questioning all their much loved braces, either thinking that I’m in drastic need of one of their impassioned spiels, or being disgusted in me for daring to think anything like the contrary.
Quickly speaking, I venture that discussions on implications and ramifications of a disability on the fullness of emotional wellbeing and healthy feeling modulation could be very instructive. It already implies we are completely capable human beings, and could be used to further suggest features in society which unnecessarily go towards making our lives more complicated, with what we may manage psychologically, in ignorance of which may create burden, angst and disruption. It is also a microcosm, illuminating what may help elsewhere in society.
I did indeed attend as a last minute replacement at the previous year’s conference in 2013.
One of the speakers there was John Armstrong, a well-established social role valourization trainer who advises all sorts of disability sector services in Australia and New Zealand. His distinction of autonomy being more than choices, and then first order choices to answer immediate want as separate from second order long term choices for long term sustainable wellbeing, was something so clear that I had wished and was hoping those I’ve lost contact with in the sector had heard. They do work with and endorse John, and I hope such an explanation got through where my attempts drastically failed. It is ideas like this I have known my peers to scoff at before, almost as if some hadn’t been seen as needing basic guidance on how constant instant gratification leads nowhere, dismissing such advice as pesky authoritative control. Here too, I didn’t need to adhere to a model to be assured that I wasn’t so lost.
I may have cringed then when speaker Michael Kendrick, also in 2013, said that you may as well refer to the ethos expounded as indicative of a movement, and overall these kinds of murmurings I’ve heard right throughout the conferences I’ve attended were at base from a frustration at unrecognised and lost potential. At base, I could warm to this so much, and the practical and sensible steps proposed are hard to argue with. However, I again lament at just providing another way of regarding society that elsewhere has created inconsistency unseen as focus shifts, with so much implicit pronouncement on what just becomes popularly valued. Bob Jackson at this later conference argued passionately along with others that so many stories have to be heard, while long term disability campaigner, Lorna Sullivan, said she is sick to death of fads, and that gains made for and with disabled people to lead meaningful lives were continually being eroded again. Many joined in in saying that people only take what they want to hear, no matter how the contrary is laid out. I was surprised that this seemed new when presented. I accepted such ages ago not as particularly negative, just something to get around.
Indeed, I was most impressed at how Bob Jackson took the time to give me some thoughtful advice and direction when I introduced myself. A talk from the Enabling Good Lives team also put me in good heart. I was also proud to hear about what my own branch of CCS-DA is doing to support disabled refugees and their families. I attended the talks certainly with not only my needs in mind, but to also understand other perspectives, and what others could need. I did end up listening to a lot on independent living to both help others and myself. I won’t deny feeling frustrated in going over and over just particular cases of general themes, knowing that others in my personal life have changed from where I had once been so proud of them, and now intervening events have them seeing my life so differently to how I see things. I was frustrated that there I was having to smile at such gloss and applaud such painful basics, but was never frustrated at what circumstances meant for others. I was anxious at how much was so geared as if platitudes held and there was largely one sweeping build up in people’s lives as to what preparations had been for. Again, I wondered about catering for people who could no longer emote as they always had – the rhetoric only kicks in fully assuming that nothing requiring anything specially informed is needed to leverage will and enthusiasm. There was no understanding for people who had approached so much before, ridden sky high on stirring platitudes and inspiration, but now had come down, saw considerable failings and costs, and now want to go about things more maturely. However, common practicalities and responsibilities ensue, and I had wanted to remain open for advice on this.
I have been criticised in the past when discussing the two conceptual models prevalent in the disability sector as if I am trying to imply that society doesn’t exist, or that it doesn’t change, when of course it most demonstrably does in various senses. Furthermore, I would say that to an individual, we each carve and partition reality up differently, including what society is to us. It has explicit and implicit aspects for each of us, all differing and changing as we live and interact. Those changes may strike us off following different and distinct meanings once again, all of us influenced by how we interpret as individuals, amidst each other nonetheless. Yes, there are a myriad of analyses possible therein, valid, and at times important. It is my belief, however, that if and when questions of general political power and validation are involved, pragmatic acting upon that knowledge doesn’t make any other pathway towards knowings and understandings invalid. Neither should any pathway have to be completely and permanently subjugated to just what necessitates political and practical reductive recourse on occasion. I’d argue that the emergent and readily seen markers of what may be referenced as a society, is just at the surface; I have been known to say society is just a composite conglomerate. I would think understanding so wouldn’t make a seizing of political power, for the sake of that power and recognition, appealing at all in itself. I would suggest there is a humility instead in realising how much we may not understand of each other, how more global practicalities have to be only gross provisions, serving as much as possible with an openended scope.
It follows that to me it is just a developmental stage to want to ‘belong’ in society – for the most part, such locution doesn’t register as having to mean much to me. To want to converge on what a majority in society is perceived as doing for the sake of it, seems slightly bizarre. To create an image as doing so seems empty and shallow. One becomes familiar and conversant with mores for resource allocation and types of exchange, it can be followed, but need not be where we gain all the ‘direct’ personal meanings in our lives. Neither can there be an engineering to meet and serve all purposes – stylised averages with no deep nor meaningful bases for anyone actually perhaps can suffice for just pragmatics for anyone seeking full meaning in their lives from mastering whatever current trends are alone, and even perhaps they can always remain doing so. I, however, cannot see where much internal contentment and satisfaction would flourish from such practice.
An image relies on what can be observed, as distinct from processes which may underpin it, maybe these processes differ from those assumed by an observer and totally unrelated to other features seen. What is taken as significant and meaningful to the observer and the observed can be entirely different. There can be a degree of agreement and mismatch, wittingly, or unwittingly, often largely unknown. We’re a society increasingly reliant on image, and I suggest we revel in assumed shared apprehension of an event we may like to each demarcate, but in favour of that, what is decided as having significance gets somehow divorced and cut off from individual meanings and varied approaches to the event considered mutually appreciated. A reliance can develop as life seems to go from event to event to event, we start relying on each other to appreciate and tell our stories. Unfortunately, development to wherever we get to may well be unique, distinct and an extremely rewarding path, but now there can be an addiction to having an audience. Not only do we need an audience, but society begins to reward those whose lives appear as shared images lull us into thinking. Discrepancies between looks and the processes giving rise to these can end up, I suggest, being felt painfully and confusingly. As colloquially as an inquisitor upon me might challenge me in familiar tones, there are senses to which I don’t want to live for goals, or dreams, or special occasions, or have big loud passions to share, because just knowing the terrain, exploring the processes, developing and growing is my ongoing reward. Observable markers are more external byproducts after the fact, if anything at all.
But psychological wellbeing is crucial for this. As a layperson, to understand the difficulties I’ve experienced with a few said to be my peers and contemporaries, I have had to grasp a bit of the albeit incredibly dated object-relations conceptualizations of narcissism to the extent with how feelings can develop orientated around an image and never become self-modulated. This informs me a bit with what I have said here. I believe advisement of the sort could be a part of informing disability movements, which often draw upon strong motivational regard. I’d be the first one to agree when disability studies literature suggests notions of narcissism are used too far to inhibit novel and innovative ways of doing anything in daily lives, but I venture that this is completely different to letting the concept provide a descriptive tool for a look into the development of emotionality. Criticisms conflate two very different unnecessarily related features couched as aspects of narcissism, illustrating that my allusions are indeed just in casual and convenient terms. Nonetheless and to be clear, a prominent matter in this report, is the defensive fortifications built up around images which I suggest are prohibitive amongst those who have indeed seemed to miss out on nurturance into a fuller enrichment of life.
I could say that the conference frustrated me, and it did, but attending and writing this very essay has characteristically done what I have just said gives me the most satisfaction. That is not by having too much stand out and hit me, but to weave textures in, to have an understanding of how some thinking comes about, to be able to be happy at how I’ve taken things in so far, and just move on able to take more life in. I believe it takes a wellbeing that must be sustained in doing so. I find it actually an honour to be relaxed and contented enough to just enjoy and explore the process of living and interests, to zoom in and out of perspectives, to not let sometimes necessary assertions of myself overtake my overall outlook completely. If it helps others to think so, this brings out a feel to me akin to inclusion – I get far too caught up in whatever I explore to actually worry if it is. A push encouraging extreme goal directedness as metered out by some in the disability movement, great expectations from social acceptance, pinning too much validation as if necessary from society en masse, just isn’t what I’m after. Neither would I want to be so influenced by such way of thinking. It actually abhors me. I ask how to express my thinking much more briefly so that I won’t be so conceptually assaulted by charismatic controllers as knowing nothing.
I’m so grateful to have everything I’ve documented here in print, so I can get on with other things.
It is in this spirit of just being able to enjoy in appreciation with which I give thanks for the support and friendship of Renah Hohaia, Getahun Gema and Daniel Maseega as the key people who particularly made my attendance at this conference in Wellington possible, but also to other people from the Auckland CCS-DA office who lent a hand and also backed me. Renah has been unwavering in her enthusiasm and in wanting the best for all around her. I can’t say how the belief in me from people at CCS Disability Action Auckland as a whole have restored lots in me, and I would like this belated report to go a bit of the way in to etching out variations that others could be understood with, perhaps. The Cerebral Palsy Society inadvertently paid for my taxis. My mother and ever dependable family in Wellington also provided some assistance. The Jubilee Trust funding was, of course, very crucial in making this possible as well.
KAY NEICH, AUGUST 2015