Alan Clarke Book Project

PHILIP PATSTON

Doing comedy for the first time is like being born. The nine-month lead up begins with the idea to do something creative with my life a conception of sorts. The gestation takes the form of unintentionally finding a comedy course short and cheap like me; doing the course, learning comic devices and techniques; and rehearsing for the first show. The impending reality of a new life as a comic performer grows and grows like a developing foetus, becoming slightly more uncomfortable with every week. The reality of my decision hits in the !th week" #hat have $ done% &ow will my new life be% #ill the first breath on stage, in front of an audience, hurt%

#aiting backstage, an hour before $'m due to go on, $ begin thinking $'ve really made a big mistake. $ can't envisage surviving the ordeal that lies in store for me. $ need to endure a whole ten minutes onstage, remembering my lines, getting the timing right, building rapport and trust with an audience that needed proof that $ won't die on stage. Then a terrifying thought creeps into my consciousness for the first time in nine months" &ow will $ elicit the one response $ need laughter when they have been told all their lives not to laugh at disabled people% #hat on earth have $ been thinking% #hy have $ committed to this% $'m destined for failure, humiliation, even ridicule. (erhaps $ could )ust lock myself in the toilet and get someone to say $ was sick and unable to perform. *urely guaranteed failure without the potential for mortification and mockery is better than what seems now like the complete impossibility of success%

Then $ remember" $'ve dared myself to do this and $'ll only be disappointed with myself for the rest of my life if $ don't go through with it. *o $ )ust sit there in the green room, rocking in a corner until someone interrupts what they think is my enigmatic warm-up ritual and tells me to get onstage. $ emerge, not daring to breathe, into the glare of the spotlight and utter my first line" +$ live in ,vondale.-

.veryone laughs and $ breathe in we are all deeply relieved. The ne/t ten minutes might even be fun.

(erhaps it would be more accurate to say that $ imagine being born was like doing comedy for the first time. $ often wonder, were $ able to remember, whether $ may have thought $'d made a mistake, after enduring a 12-hour labour with my mother and twin brother. $ know there were times, during the long and arduous birthing process, that $ may as well have been rocking in the corner of the womb. 3y the time $ emerged into the spotlight of the delivery suite, $ was indeed sick and unable to perform. $ was christened a few hours after birth in case $ died. $ spent my first four weeks of life in a (erspe/ bo/ and, though nobody laughed at me, certainly $ was as e/posed to the world as $ might have been had $ stepped out in front of a crowd of e/pectant punters. There were a few people holding their breath and hoping $ wouldn't hold mine too long until $ was discharged from hospital.

$ like to think that my birth as (hilip #esley (atston was my essence making its own divine dare with itself. $t wasn't 4od, fate or bad luck. $'ve always had a subconscious knowledge and, in the last decade or so, a conscious realisation that somehow $ chose to do this life. $f $ hadn't $ would've been disappointed for eternity.

#hat $'m still getting clear about is why.

$t wasn't until $ was si/ months old that $ was diagnosed with cerebral palsy. 5ntil that time my parents were chastised for daring to compare my development with that of my twin, 6eremy. $t was the late !7s and Dr *pock's ideas, that normal development encompassed a range of factors that could not be compared between two babies, were high in the psyche by the medical fraternity. $t wasn't until $ was four that it dawned on me that $ had a unique way of being in the world. $ had based my notion of physical identity on

6eremy's appearance we were, after all, a pair and, since on the inside $ felt $ was )ust like him, $ assumed $ was )ust like him on the outside. $t was strange enough that $ started my education si/ months before him and, $ was told, at a different school than he would attend but, when $ arrived at 8arlson *chool for 8erebral (alsy for the first time and was confronted with !7 odd disabled kids, $ knew a mistake had been made. +#T9%- $ would have thought, e/cept that colloquialism hadn't been made up at the time. *o, something like, +&ow on earth did $ end up here% #ould someone please get me to a school where $ belong%- went through my troubled four-and-a-half-year-old mind.

This was my first e/ternal identity reality check. :ver the ne/t few months $ slowly became aware that what was on my inside wasn't necessarily what people saw on my outside. $n the years to follow $ struggled with finding ways to make sure that strangers realised that what they saw of me was not necessarily what they thought they were getting. ;umber one on my list was to stop people thinking $ was stupid. ,s $ got older $ noticed that people who didn't know me kept on insisting on treating me like an infant. +&ave you been a good boy today%- seemed to be a favourite enquiry amongst women in their si/ties and $ learnt quickly that how $ answered made a difference. $ began varying the answer when $ was about twelve. +;o, $'ve been doing my best to be a little creep,- and +That depends on what you mean by good.- #ry observations or laconic retorts seemed to snap folk out of their illusion that my mental age was half that of my chronological age, quickly letting them know that there was something going on in that poor, palsied brain of mine. :f course there were people who insisted that they would cling to their diminished idea of who $ was, but $ soon figured out that that was more about the volume of activity going on between their ears, not mine.

3y the time $ was <=, my relationship with my parents had become strained by my teenage rebellion. *moking, drinking, dying my hair and piercing myself was not the behaviour they had intended me to display as a celebration of their efforts to protect me from society's low e/pectations of me as a disabled person. $ tried to point out that they had raised a rebel by making me different to what society e/pected me to be, but it didn't wash. $ look back with the benefit of social work and youth development training and see the classic behaviours of a young man struggling to make sense of a world in which reflections of himself were none/istent, incoherent or unrecognisable. $n the mid-27's disabled people were invisible in popular culture. The

only disabled role model $ remember was T> character 8hief Detective ?obert $ronside, made even more fictional by the fact that he was played by the non-disabled ?aymond 3urr. $ was also struggling with the burgeoning awareness that $ was gay and trying to reconcile my physical reality with this strange but enticing body-beautiful culture, in which my likeness was not only absent but rather ungraciously spurned.

$ see it as testament to my competence that $ managed my risky behaviour so that it never got me into serious trouble. $ was never labelled +at-risk-, probably because $ was still seen as a +good boy- in the eyes of well-meaning welfare workers. ,dded to this was the fact that $ was by now e/tremely good at dispelling concerns about my competence by pro)ecting to the world, through humour and intelligence, a capable image of myself. $ was taught to be calm and +unshockable- when $ trained as a @outhline counsellor and this open display of responsibility gave the impression that $ was in control of my life. 5nderneath it all, though, $ was completely unconvinced that $ would live past thirty and, day-to-day, $ was in a constant state of an/iety that my unreliable home-helps, dodgy flatmates and flaky boyfriends would fail to provide me with the support $ needed. $ had few friends with whom $ felt comfortable enough to share my insecurities and $ had completely divorced myself from my family.

Throughout my early A7s $ struggled to pro)ect a veneer of confidence, but not far below the surface $ felt scared and alone. $ don't know when $ became aware of the adage +fake it until you make it,- but certainly $ have always been adept at it. 9inancially things were tight on the invalids benefit and $ was an impulsive spender, but $'d picked up from somewhere the belief that money would be there when $ need it. This uncannily reinforced itself repeatedly. ;umerous times $ remember thinking, +?ight, this is it, $'ll never be able to make ends meet,- but then $'d secretly test the belief. $t always heeded my dare. $'d get a call asking me to speak or run a workshop, or someone would turn up wanting to rent the spare room. $ developed a little pact with the universe it made me feel slightly less alone that $'d trust it when it came to money, as $ certainly wasn't to be. This pact began what became a kind of customised, pragmatic spirituality a set of beliefs that were useful, sensible and kept me grounded while still connected to some sense of greater

being. ;ot a godly 3eing. ?ather $ would e/plain it as the creative synergy of being we humans e/press and e/perience, with all other life forms on this planet, as the chaos and wonder of life.

$ haven't always been that philosophical. 3ack then, in the B7s, $ hadn't made the connection that, if one way of thinking worked in one area of life, it could work in others. :ne evening something clicked. $ was in a particularly glum space, alone on a *aturday night, drunk and stoned, concentrating on what $ didn't have a partner, a )ob, a nice house, a good car. $ felt stink. $ remember this stray thought crossed my mind in the midst of my pity-party" $ did have a house and a car and some people didn't. &aving no )ob was not all bad $ often en)oyed my commitment-free lifestyle and speaking of commitment, being single had its upside too.

$ noticed that $ felt better, but nothing had changed, e/cept my thoughts. $ was in e/actly the same situation, but my whole life had changed. $n seconds $ had gained a commitment-free lifestyle and the understanding that $ was lucky to have necessary resources that others didn't. This simple realisation was to chart the ne/t <C years of my life and create a chain of e/periences and learning that would instil in me attributes $ had only dreamed possible in the first AC. #ithin si/ months $ was employed full-time for the first time in my life at the &uman ?ights 8ommission and soon after $ was able to upgrade my car. $ also set my mind to moving house and, by lobbying politicians, engineered a &ousing ;ew Dealand transfer to #estmere.

$n <BBB, the parallel performance career $'d begun three years earlier saw me win the 3illy T ,ward for commitment and contribution to ;D comedy, feature on the iconic soap opera, *hortland *treet, and be bestowed with the inaugural title of Eueer of the @ear by the gay television series, Eueer ;ation. ,ll this happened one year after $ had done two tandem skydives and made the biggest decision of my life to leave the security of my full-time )ob and pursue self-employment. $t was a huge risk, made bigger by the choice not to go back on the benefit. :vernight, $ went from earning over F2C7 a week to nothing. ,t the time $ wondered if $ was craGy, but it was time to test the universe again and up the stakes a bit. This time $ chose the belief that, not only would $ have enough, $ could make much more money by being self-employed than the F27-odd per week $ could earn above the benefit.

Ten years passed and $ didn't know if $ had made the right decision or not to have said $ had would have implied that, had $ chosen to stay safely employed or go back on welfare, $ would have been wrong. Those choices would have created a very different e/perience for me. $f $ had made some )udgement on my decisions of a decade ago, $'d have described them as a genuine e/pression of my nature and, as such $'d have fet confident $ had e/perienced an authentic result. $ am a risk-taker by nature. *imilar to the skydives $ did back in <BBB, $'ve consistently given myself short, sharp reminders that feeling very unsafe at times makes it easier to feel safe the rest of the time. $'ve read books about right-brain leaders, social change, creative learning, social intelligence and synchrodestiny all have reminded me that $ am somehow unable to stop myself questioning rather than accepting what is. The very nature of risk is the possibility of something else.

$t was )ust such a likelihood that led me to question the nature of disability. (olitical movements, that $ openly subscribed to in the past, have rescoped, redefined and reclaimed disability as social oppression, opportunity and even pride, but whether you define it as belonging to you or to society, disability is fraught with negativity, limitation and fear. .ven euphemisms like physically challenged and differently able, apart from being linguistically questionable, promote the notion that something that should be, isn't Hor that shouldn't be, isI. Jy question is, why create disability at all% $ don't us to deny our e/perience, which seems to be the other alternative both e/tremes seem to me to result in us somehow losing something of each other and ourselves. $ don't want to deny the fact that my e/perience is unique because of how my body functions and how others respond to that. &owever, it's a small part of my e/perience and the more $ focus on it, the more it features in my life. (arado/ically, the less $ focus on it the more it features too, because $ fail to do things that lessen its effect.

,n e/ample" $ worked for five years with &ousing ;D to get them to modernise my house. That meant monthly phone calls to my tenancy manager, talking to him about the benefits of moving and taking walls

out, and building a deck with a second ramp for an emergency escape, should it be necessary. &ad $ denied my need for these ad)ustments to my living and working environment, $ would never have built a case for the alterations.

Today, $ have a living and working environment in which, apart from a few hours of support per week, $ am totally autonomous and am effectively non-disabled.

6ust like the change in thought that changed my life so significantly in my A7s, my choice to reframe my e/perience from one of +disability- to one of +uniqueness- has also changed my life. $ also believe that it could change the world. , refocus away from our fear of disability< to our fascination with e/periential diversity is the only way we are ever going to stop creating attitudes, behaviours, laws, policies and environments that do not work for us. Disability awareness, or responsiveness, or whatever we choose to call it these days, only creates what we are trying to avoid. $t's time to celebrate and promote our unique e/perience.

$'m halfway through my first gig $'ve been on stage for C minutes. $'m not doing half bad if $ do say so myself. $'m aware that $'m only as good as my last laugh, only as funny as my last gag. , voice in the back of my mind is saying gently, +Keep this up and you could get somewhere with this comedy lark.- $ realise for the first time that $'m doing something that most people would be scared to death even thinking about it, let alone going through with it. $ feel a bit smug in the knowledge that doing it is far easier than thinking about it. :nce you start you get into a flow, you kind of forget yourself, forget there was or is going to be anything other than this. +4od, how profound,- $ think. +*top thinking and )ust get on with it,- says that gentle voice.

3efore $ do get on with it, $ allow myself one more reflection" #hy did $ dare myself to do this% The answer comes, in a wave of laughter from the crowd. $f $ had known why, $ may have never done it.

< :ver half of the respondents of a recent poll commissioned by disaboom.com said they'd rather be dead than severely disabled.

Postscript

$ wrote this chapter in A7<7 and now, in A7< , $'ve been asked to add a postscript. (ro)ects such as this have a habit of being protracted and, obviously, the seismic activity and its wake in 8hristchurch over the past few years, from where the pro)ect originated, created their own distractions

$t was interesting rereading my self-reflections, some of which $'ve modified slightly to fit better with my sense of self at this time.

*ome things have changed. Jost significant was my choice, quite soon after writing the chapter's first iteration, to quit comedy. ,s with my earlier reflections, $ made the decision while doing a gig. $t was at a conference in #hanganui. $ said something $'d said over a hundred times and realised $ didn't believe myself anymore. $ thought, +$'m sick of saying shit for laughs.- That was my last comedy gig. $ came back to ,uckland and, apologising, profusely, cancelled two booked gigs, suggesting other alternatives. $t was like a switch had been flicked and that fifteen years of my life had ended. $'ve never regretted it.

Jy focus now is on social change and leadership. 3etween A77= and A7<A $ overdosed on professional development, doing a year-long creative entrepreneur programme, a three-year social entrepreneur fellowship, a 4oethean-based social change workshop and the Leadership ;ew Dealand programme. $'m also )ust beginning the third year of co-directing 3e. Leadership, an initiative of the 3e. $nstitute, whose lofty vision is a <77M accessible society.

Through Diversityworks Trust, which $ founded in A77C, $ direct pro)ects of our own design and in partnership with others, to promote diversity, creativity and social change. These include lobying the media industry to create more diversity on screen by highlighting the lack of representation of disabled people. #e've

published a kids' book about a boy who uses a wheelchair, whose friend thinks he's a superhero. #e've also partnered with a Deaf innovation hub to create an online archive of ;D *ign Language.

,s a result of the 4oethean workshop $'ve become interested in the phenomena of growth and decay, light and shadow, and uncertainty. Jy work around diversity is now about encouraging decay of identity, organisational culture, agreement and the need for answers, in contrast with the growing categorisation and representation of difference that we are currently seeing. $ was privileged to have the opportunity to speak about this at T.D/,uckland in :ctober A7<A.

$ have become less naNve and optimistic about the notion of creating one's own reality. $ e/perienced harassment from two neighbours during A7<< and A7<A. This was not a reality $ consciously created and yet it was a difficult and often frightening one to deal with for two years. $t caused me to deeply e/plore the notion of shadow, perhaps brought about by the lightness of the life $ have created for myself. The shadow is such a misunderstood part of our society, which we ignore, deny, punish or hide, rather than seeing it for the part of the wholeness of physical e/istence.

They say one door closes and another opens. (erhaps to carry on the metaphor of comedy, one curtain closes and another opens. 9or me the curtain closed and $ left the building, wandered down the road, in search of another stage. :r perhaps not. ,t the moment $ think $'m happy wandering the streets, content with the )ourney and the uncertainty of what lurks in the shadows around the corner.