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Autobiography Chapter 18

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Simon Mark Smith’s Autobiography


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Dream 9/07/2009

At the side of a slip road, somewhere near Barking, East London . A woman is lying next to a car that’s on fire, she’s dying. I am sitting next to her crying. I don’t want her to die.

I am now driving away from the scene. I have another woman sitting next to me. I say.

“I can feel the most beautiful pain”

* * *

* * *


Here is my head, you are panning around me, or I am spinning. It’s hard to tell. I am here looking at me with you. My skin is not wrinkled yet, I am 44. My hair is receding but lately I have let it grow a bit longer. Normally I keep it in a crew cut style, like most balding men do. Some of my hair is beginning to go white, and those hairs seem thicker and stick out. My skin is pot marked by teenage acne, even the word acne sounds a bit like angst. My head is like a spearhead, it’s what people notice firstly, it’s what touches them before my arms do, it’s what has guided me, both through its interior and exterior impact on the world. My head is my symbol of humanity. My head is how my spirit touches others, through thoughts, words and kisses. My head is the interface of my highest and darkest feelings.

* * *

If I held a coil in front of you (like a cork screw for example) and you were to look at it from one end you’d see a circle, from another angle you’d see a spiral and from its side you’d see a series of peaks and troughs.

* * *


Bruce Springsteen is on the radio saying that by the age of 11 most people have already been damaged.

* * *

January 26 2008

I’m in a night club in Eastbourne . It’s 2 am and the lights come up. I’m talking to a tall woman with long red curly hair. I glance to my right and see a woman standing nearby, our eyes catch each other, we look away. My friend moves so she blocks the view, I move so I can see the woman again. I see the woman glance at me again. Our eyes hold on to each other. I say “excuse me” to my friend and walk towards the woman.

I say “I think I better give you my card.”

To which she says “And I shall give you mine”.

She’s quite drunk but I try to talk with her, she has a friend with her who translates some of the slur. “Tomorrow, when you’re sober and you don’t want me to contact you” I say “then that’s ok”. She looks at me and mouths “No, you’re beautiful, you’re the one”. As we part she attempts to snog me but I don’t want to be kissed whilst she’s drunk. I gently kiss her goodbye.

* * *

On a scale of 1-10 how happy are you at this particular moment?

10 would be the happiest you’d ever felt.

On a scale of 1-10 how unhappy are you at this particular moment?

Remember 10 would be a situation where you were being tortured or mortally wounded.

As I write this I feel as if I’m on about 2 in the first measurement and about 1 on the second.

I thought originally that they’d add up mathematically, that if I was unhappy I could not have any happiness, but, for me, I found myself feeling both feelings.

* * *

When I am at my most happiest, it’s not when I’m most happy. It’s when I feel calm, connected to others and at peace. Maybe a coolish number 6. When I’m most unhappy, it’s not when I’m feeling the greatest physical pain, but when I feel a sense of separation, loneliness, and meaninglessness.

* * *

Another shape I want to add to this visual introduction is an arc. Not the Noah kind but something like the path a firework follows as it shoots in the air then returns back to earth, a parabola for all you technical types.

We often mark out our lives as a series of eras, although in my mind they’re actually a collection of over lapping eras. Places we lived, work, education, people we loved, political and physical states of being, all these things over-lap like a series of arcs.

My mind tends to see the world in terms of visual metaphors.

* * *

This chapter is partly about watersheds. A simple version of a watershed would be a bit of earth that divides two pools of water, but watersheds can exist on a continental scale, where water falls either towards one ocean or another. It’s not a shed, like a garden shed, it comes from, the term for splitting or dividing, “shedding”. Symbolically it’s something between other things, the place where something ends and another begins.

* * *

Summer 1976

I am eleven.

11 to 13 is a watershed age. As Bruce Springsteen mentioned earlier, by 11 most people have experienced the damage that’ll haunt them for the rest of their life and whilst most people see 13 as the changing point 11 is probably more poignant because it isn’t marked with any ceremony, it’s not even a special number, it’s not a teen, it’s an uncelebrated but significant turning point.

* * *

1976 was infamous for its draught like summer and long traffic jams in England .

* * *

January 2009

I’m driving towards Parliament. A memory of sitting on Mr Phil’s shoulders aged 5 comes to me along with an image of a group photo of the occasion. I wonder if 6 years later when meeting Mr Phil at the community centre whether my mother remembered the event.

* * *

When I was a child I would spin around and around till I felt dizzy. As I get older it feels like the cycles I follow in life become slower and bigger. Like the excitement and lows I experienced as a youth expanded and became less intense. That is of course excluding relationships, which tend to be just as manic at any age.

* * *

A lot of people think a black belt is the highest belt in Karate, however in some Karate schools the highest belt is white, although the belt is a double folded one. The point is, that Tao (Pronounced Dow) which underpins a lot of Japanese philosophy believes that our lives and the universe follow cycles that we return to the same point in time. Just as if you look down the coil you see circles, but as you travel along the coil you may come to a similar position to where you started but you’re not in the exact same one, you’ve moved slightly along the spiral too.

* * *

January 27 th 2008

“Have a look at this text I sent to a woman I met last night” I say to a friend.

“What is it”

She reads it and laughs “Blimey, if I received that I wouldn’t know what to do”

The text read “If you want to feel the connection again contact me”

* * *


Mr Phil has taken me to an athletics meeting where he’s giving out medals.

I lean towards him and say “One day I’ll be like them”. I could taste my need for feeling significant. But it wasn’t until I tried athletics that I came to see that I was never going to be an athlete. I spoke with the mind of a child. I had no idea of my own limitations.

* * *

Growing up is partly about coming to terms with who we really are, (or is it that we just learn not to let others know who we really are?).

One of the ironic things about this is that as we approach a watershed we become full of fear, believing that we’ll never cope with the arduous journey across the land between seas of plain sailing. But then we find in ourselves resources we never knew we had, we discover who we really are through adversity – either our limitations or our strengths -. Adversity is often an unexpected friend.

* * *

We had to walk from one boat to another across an arid landscape

She looked at me.

“We’ve been limping for ages now”

I stopped my sea gait and replied

“We’ve been surviving. I’d rather limp than give up.”

She sighs

“I don’t think I can go on, it’s not worth it”

She lays down with her back to me

“I cuddle up to her”

The sun sets and the sky goes dark.

She’s angry for a while.

Then she turns around and cuddles me.

There’s a feeling of peace between us

We fall asleep

When we wake she says

“I don’t want to go on”

I say that I do, that it doesn’t feel right not to.

She goes quiet

A bit later on she says she’s happy we’re together

We walk on, get to the next ship and set sail.

Soon we’ll come to another crossing.

We’re not going around in circles

We’re following a spiral

But I don’t know

If this coil of ours is mortal or if our love is eternal.

* * *

Endings are the beginning of another story.

I’m reading a book at the moment about a man with a dog’s head, I’m only a third of the way through it and already I’m sad that it’ll end.

There are character’s I met in books decades ago and I still remember them like old friends.

* * *

The more I love someone, the more fear I have of losing them. The more I fear losing them the more I lose myself and the more they lose me.

* * *

The day after I sent the “connection” text I got a reply asking if I wanted to meet in a pub. So we arranged to meet up the next day.

* * *


I do not remember the last day of junior school and if there was a sadness about it ending it didn’t mark me. There’s always that thought one has, “this will be the last time I do” such and such, but stepping off this vessel was a relief, it had been an arduous journey at times.

My mother told me “school days are the best days of your life”, but they weren’t for me and no doubt telling me that had me believing life was gonna be pretty awful.

If anything though, living on Roundshaw meant that we’d all remain in close proximity, so maybe it felt like the era hadn’t ended after all. It was just arcing to the ground and fading out.

* * *

My mother had arranged for me to have 4 holidays during the summer break. She almost certainly struggled to raise the money and sacrificed her own pleasure for me but I probably felt she was just getting rid of me.

* * *

Holiday 1

It doesn’t matter what I do the same curiosity about me arises in most people. How do I go to the loo, how do I masturbate, how do I have sex, how do I wash and how do I dress.

Up until holiday 1, going to the loo had been an activity that I’d received help with. Look this bit’s going to be a bit difficult for both you and I, so I guess either you skip this section or we grit our teeth and bear it.

* * *

When I was in my early 20’s I was sitting in a waiting room in a hospital when a man with half legs and half arms walked in. He was dressed very well and as we chatted I found out he did a very “well to do” job. But during this conversation I also found out that he had to have help dressing. He’d always been helped and didn’t realise there was a way of being more independent. I showed him a few of my techniques for dressing and he went off.

We met again a year or so later and he informed me that our previous meeting had changed his life. He’d learned to dress, left his parents home and started to live independently.

* * *

But none of us are truly independent, we are interdependent. We may go through periods in our life when we feel we’re independent, but either before then, or later on we’re going to need others’ help and support, both physically and emotionally. So before exalting independence as the new ideal, I believe it’s best to keep it in perspective.

Our value, not only to others, but to ourselves can’t be judged on whether we can “look after” ourselves. Throughout history people who’ve seemed to have been a burden have become kingpins in our society’s development. Nelson, Roosevelt, Bader, Hawkins spring to mind immediately.

Now you may think “Well he would say that wouldn’t he” but for me the struggle has been the opposite way round. I’ve spent many years struggling with my own desire to be independent – A Super Crip -. But we are human beings, not human doings. What shines from us is something in our being, the motivation behind why we do things. I’m impressed by Mike Tyson’s physical prowess as a fighter but disturbed by his hatred. I’m just as impressed by Leonard Cohen’s desire to improve his and our emotional world as I am of his talent.

I have met people who are lightly disabled and their parents have prayed for them to die. I teach some people who can’t speak properly and are only able to move their head and many people think they shouldn’t live.

* * *

So holiday 1 is a catalyst for me.

I had been going to the local riding school for disabled in Carshalton. Set amidst fields and small holdings it was a world away from Roundshaw. One of the teachers from my school, Mrs Gee, would often run me to the stables in her car after school.

Whilst waiting for my turn to go round the arena a million times at 1 mph I’d sit and chat to the other kids. The place smelt of manure.

We were taught to muck out the stables, put on the saddle and all the other bits and pieces the girls seemed so interested in. Once on the horse, or pony, we’d trot around the arena, alternating from trudging to learning how to do rising trudge (I mean trot). Sometimes the horse would break in to a canter and I’d be holding on for dear life. For an extra laugh the instructor, normally a ruddy faced man called Malcolm, would have us try riding bare back. I can’t tell you how much I enjoyed that.

Mainly I’d be given a docile little dark brown rotund pony called Bramble, who I had an unspoken pact with, which was to allow him / her to do almost nothing and sniff the ground for which he / she was not to throw me off, which by doing nothing became increasingly likely.

Sometimes I’d get a chestnut horse-pony who would delight in rearing up at which point I’d dive head first in to the sand. End of session, great result for both of us.

Malcolm thought he’d try me out on jumping. Admittedly the jump was only about two feet high however Bramble would consider this a breach of our pact and would either do a Judo throw on me at the final approach or actually do a five foot high jump, banging the back of my head on his/her rear and the front of my face in to her/his neck bone. Needless to say I wasn’t a natural and didn’t get too much joy from it all. Where there’s horse muck there’s money, and many of the “helpers” were local rich people keeping themselves amused. Occasionally we’d be invited to their garden parties only to find their garden was bigger than our local park and it had its own swimming pools and tennis courts.

So this year the riding centre decided to hold a week long holiday. We were all to camp in the field behind the stables and go out to different places each day. Needless to say this would have been more fun if I had organised for someone to help me in the loo, with regards wiping my bottom. Sadly I shared a tent with a helper who didn’t like me and I didn’t like him so I wasn’t going to ask him and for the first time I felt too ashamed to ask anyone else.

Three days without going for a crap resulted in me waking in the middle of the night in severe pain and nausea. My dislike and shame were set aside and I asked the helper in my tent if he’d help but he looked at me and told me to wait ‘til the morning. I then made my way across the cold damp field to Malcolm’s tent, he was asleep but after I woke him he said he’d come and help me in a minute, but I waited outside the chemical toilet because I didn’t know where the actual toilet was. I was freezing cold and the place stunk so I took myself back to my tent and finally got back to sleep.

The next day Malcolm got a helper to help me, but the trauma of that night instigated an investigation by myself in to how to how to cope with going to the toilet.

* * *

If you don’t have arms long enough to wipe your bottom then what do you do? There are three main approaches: Use other parts of your body, such as your foot or heal; use your environment – e.g. put some paper across the rim and side of the toilet bowl, or find another appropriate object ( At this point anyone who’s had me in their house is wondering what the fuck I’ve wiped my arse on and just for safety’s sake are going to fumigate and decorate the whole vicinity); and finally one can use a purpose built design, such as a loo with a built in water spray and bottom dryer (Clos-O-Mat), a bidet, a shower, or some kind of contraption that’ll hold the paper and either be positioned nicely for the job or held and manoeuvred to taste. So these are just a few of the wonderful ways in which one’s bottom can be kept squeaky clean without the use of hands. Happy now?

* * *

So that was holiday 1, a painful learning experience.

* * *

* * *

Holiday 2

We had been to Broadstairs a few years running, originally Michael had taught me to shoot on arcade shooting gun here, we had played mini-golf, I had been allowed to watch the “Bionic Man” in the proprietors lounge once and aside from cutting my legs on some rocks not very much happened on our trips to this place.

My mother had come here with her family and since then not much had changed. Its charm lies in the feeling it gives out of a bygone age.

Italian ice cream parlours, selling Knickerbocker Glories , crowded beaches, punch and Judy shows, arcades full of penny waterfalls, fishing nets, rubber rings, bed and breakfast quiet cordiality.

* * *

One day my mother took me to meet the parents of the man she’d regretted leaving when she was a young woman. She dressed me in my new school uniform, I was no doubt on display, a message to her long lost lover.

We sat eating sandwiches and cakes in the conservatory.

At one point the mother said that if she had me in her care she’d knock me in to line. I was not impressed, and no doubt neither was my mother. A quiet and polite retreat to our single mother and son B&B room rendered the day its end.

* * *

I would come here again as an adult, more in passing than to stay. Even in 2005 it felt as though I’d time warped to the 1950s.

* * *

My Torso is turning in front of you now. My arms, as you’re probably already aware end around the elbows. My chest is hairy. I am not fat, (well that’s a matter of opinion apparently) but I have put on weight. When I was young my torso was well toned. I have broad shoulders and a largish chest.

My arms have defined much of what I have experienced in my life but just as they are physically, so metaphorically too they are a side issue. My torso defines the paradox of my life, that I am abnormal whilst normal. I am different and yet the same. My torso is the place where I feel emotions the most: my heart; my gut; my back; my kidneys; my bladder; my stomach. One day when my heart stops, my brain may have a moment longer to live, but soon it will stop working too. My torso is where my life starts, feels the drama, and ends.

* * *

I walked in to the pub, the drunk woman with the business card wasn’t there yet, so I went to the bar and got myself a drink. I sat near the door on a comfy chair and waited. I couldn’t quite remember what she looked like, so each woman who walked in was a possible candi-date.

* * *

Holiday 3

The Thalidomide Trust had developed holiday homes designed to cater for families with “children of Thalidomide”. In terms of catering for any special needs the provisions were basic compared to today’s standards but their main intent was to also provide a shelter in terms of stigma. Even though I wasn’t a Thalidomide “Survivor” my mother and I were still welcome to stay at the centres. My mother chose for us to stay in Norman ‘s Bay, in a guest house called Four Winds.

The main proprietors were a couple who’d had a son born with no arms as a result of Thalidomide. The father had been a cook in the army and the mother was a thin force to be reckoned with.

When we first arrived we had to spend the night in a caravan in the garden which backed on to the beach. Soon after getting unpacked a big storm took hold. My mother lit the little gas lights, and warmed a can of something on the tiny cooker as the lightning and thunder interweaved the gusts of wind that had us swaying and cowering.

After such long dark nights come bright fresh mornings, the sun shone hard while the wind blew a cold air upon us as we stepped out of the caravan. We were at the end of a long garden that ended gradually where the pebbly beach began. At the other end stood the main guest house, a square of geometric outcrops of white. At the back was a conservatory, and between us and them were strewn various gaming props, such as a table tennis table, a pole with a string with a tennis ball attached, a table football game and other swingy, rocky thingies!

Mum walked down to the beach and pulled shells from the groins, brought them back and boiled them in a pan of water. She gave me a muscle to eat, but all I experienced was a mouthful of sand and grit. She pulled a winkle from a shell with a pin, “come on just try it” she implored.

We walked to the house and were introduced to the other detainees, most of whom were just about to set off back to abnormality. We’d come a day early – hence our temporary accommodation – so we were outsiders for a few hours until it was our turn to become old timers.

Norman ‘s Bay was a quiet place, a row of houses next to a camp site, a local shop run by two old sisters, a long platform empty station, a manually operated level crossing, beach and sea. A road in, and when the level crossing barrier was up “a road out”.

* * *

It was 1976, groups of men and boys sat in darkened rooms, the sun broke through cracks in the curtains casting beams through smoke on to tins of beer. Loud cheers and groans would emanate following the plight and struggle of a football team. But I was not a fan and played outside, my mum had brought down my bike, and I explored.

* * *

I don’t live far from Norman ‘s Bay now, and often traverse the still manual level crossing. Now the person who operates it sits in a grey Portacabin, but back then the platform had a building on it – more of a shack – in which sat the “Station Master”, and to the side was a small waiting room. Now the platform is empty except for a small plastic “stand in” shelter.

How I managed to befriend the “Station Master” is beyond me now, but no doubt would have paedophiles rushing to take notes. Children – well me at least -, seemed oblivious to the possible dangers of befriending adults, but back then I did.

And so John, the grey haired, station master, ticket seller, ticket checker, cleaner, administrator, and level crossing operator, would make me cups of tea, tell me stories of his life and allow me to help open and close the gates. My mother would come to politely check that I wasn’t “causing trouble”, but beyond that I was pretty much unsupervised. John would say “I don’t know why people check to see if a train’s coming, we’re not going to leave the gate open when a train comes, and anyway even if a train was coming it’d be so fast it’d be too late anyway.”

But even now I always do an extra look to see if a train’s coming and think of John.

* * *

The road that led eastwards from Normans Bay , was made of rough cream coloured concrete and weaved around the railway track until it hit Cooden Beach . I would tentatively cycle the route and each time go a little further so that within a few days I had managed to stray the ten miles that got me to Hastings, or more importantly its funfair.

Each day I visited the fair where I had found a ride I thought I might be able to master. The challenge was to lie face down on a very large circular platform, feet outwards whilst holding on to a raised nub in the centre. The idea was to hold on tight to the central hub whilst the disk spun until either the ride came to an end or you were sent flying off on to an array of air cushions around the edge.

On this particular occasion I advised my fellow riders to hold on to the person opposite’s wrists which was both good and bad advice. Bad in the sense that they all flew off almost immediately and good in the way it left me as the only rider holding on. Perhaps because my arms were so much shorter, in fact my whole body was so much shorter, the full effect of the centrifugal / centripetal force was not as strong on me, or maybe it was just that the ride’s operators felt for me and didn’t spin it to its full velocity, – though I do remember they tried a number of jerky speed ups and slow downs, but anyway I didn’t get thrown off. I held on, and literally managed to have a hold over not only the ride but all those watching. Apart from my fellow hangers on who were probably cursing me, everyone seemed to be either impressed or somewhat moved. Had I not been disabled the feeling would have been different and whilst I took some pride in my prowess I felt embarrassed because I knew that there was this other, contaminating dimension, being disabled felt like it took something away.

I had become aware of the duality of my situation, I would gain recognition for my pursuits but it would be measured with a different yard-stick that inevitably meant that my significance was undermined, presumed lesser in some way. “Good considering”.

* * *

When the ride stopped the man running the ride said over the loud speaker system “Well done Simon” – given he knew my name I’d no doubt chatted to him too – and the “audience” applauded me.

* * *

The first week was nearly ending and mum was going to have to leave me in the care of the proprietors for a few days. I probably would have been ok with this had I not fallen out with their son who had even shorter arms than I –maybe I couldn’t stand being “out disabled” by him -. As is usual, the cause of the fight between us is blurry now, but an underlying automatic dislike, combined with him being a bit older and wanting to exert some authority over me led to an explosion from me when he wouldn’t let me play snooker. I ran towards him, teeth gnarling, only to be met by a good hard kick in the chest which knocked me backwards, I moved forward once again, he kicked me again, unperturbed and slightly more angrily I lunged at him once more. This time my teeth were gnashing. He kicked me again. And so like a clockwork machine we continued this dance for a further few seconds. Nearby a blind man – who by the way was extremely good at playing dominoes – was asking if everything was alright. My opponent politely said “It’s ok” which really riled me, and seeing the despair in my eyes, started to laugh at me. In temper and frustration tears streamed down my face.

“Oh is the little baby crying?”

I lunged again, but to no avail.

“Ooh, temper, temper!”

I punched his leg out of the way which allowed me to get closer. I took a swipe at him with my arm but missed. His knee drew up and he pushed me away again. Someone pulled me off saying “calm down you two”. We stood staring at one another, enemies for the rest of the holiday.

* * *

I went to my mother’s room. She came out of the shower.

“Ooh I needed that, can you smell a funny smell?”


“It’s just sometimes a woman can smell more than others”

I didn’t know what she meant.

“Simon can you go to the shop and buy me some Nivea please? You can have an ice cream”

So I walked the 50 yards to the shop. There was a different woman there. She took the money and passed me a container. I dashed back with the hand cream, which turned out to be an empty container, so mum was not amused and sent me back with it. When I got there the woman who normally serves was there, and took some persuading about what had just ensued. I stood there while she directed pointed questions as to what exactly had happened and eventually handed over another small container of Nivea whilst tutting something about “I told her not to touch anything or serve anyone”.

* * *


Nowadays the building stands unoccupied and in a moderately dilapidated condition, with the word “Shop” still faintly painted on one of the walls, while apparently one of the sisters waits out her last days in home. In 2004 I put a note in the door saying if ever it was to come up for sale that I’d be interested in buying it, but I heard nothing.


I often drive to Normans Bay , but this time, Steve and Sue (my girlfriend), are here to shoot a bit if video. I notice a For Sale sign on the old shop and take down the number of the estate agents. I look on line and see it’s guide price of £235,000 is worth considering.

A few days later I get to look inside and I’m blown away by the potential of the place. It has 4 massive rooms, plus many bedrooms… it’s so dilapidated that there are plants growing through the windows and around the walls. If was to sell my house and get it for the guide price I could do it up, reduce my mortgage by half and have a bigger, better home. I ask a surveyor to come around the property with me who agrees with both my calculations and ideas about its potential.

The auction will take place within a week or so, so I start calling bridging loan companies. One of my relations agrees to lend me enough money for the deposit (£30,000) so by the time the auction comes I’m ready. There’s an element of gambling going on because I haven’t got a mortgage in place and if I get it I’ll only have 28 days to get all the finances in place.

When the day comes Steve accompanies me to the auction, which is in the Hilton in Brighton . I have spoken to my solicitor who tells me of a man who tried to run out of an auction after accidently bidding too high. Apparently he was chased a cross a park in London , tackled to the ground and made to pay the deposit. Needless to say the atmosphere was tense.

As the first 4 properties sold a few didn’t make their reserve prices, so when it came to Lot 28, “Sunshine”, Normans Bay I was a bit shocked to see the initial bids start at the guide price and steadily climb to £375,000. I didn’t even bother raising my card. We got up, walked out, chatted to a couple of other people who had hoped to get it too and went off for some lunch on the sea front.

The last few weeks had been full of fantasies about doing the place up and what it would be like to live there, but they were not to be and yet another house joined the ranks of places I occasionally pass which represent different lives I might have had.

* * *


When mum left the next day, she also left me with a fishing rod – sadly she didn’t teach me to fish – so wondering if she meant for me to be self sufficient while she was gone I felt a mild form of panic and a bit sad. I went fishing in a brook but I didn’t catch a thing.

The good thing about not having mum there was I could stay up late watching TV and for the first time in my life I noticed a feeling of pleasure, as I looked at the curve from Raquel Welch’s hip to her waist as she walked down a staircase wearing only a bikini in the film Fathom. It was not so much about being turned on, but more a feeling of being drawn by the look of a woman.

The next day the proprietors took me to Camber sands and as their 18 year old daughter walked around in a white bikini I just stared and stared until either she or her parents told me off.

* * *

I’ve heard it said that as a child hits puberty they receive less physical affection from their parents and consequently look for it elsewhere, but these feelings were different, they were nature kicking in and my perception changing accordingly. I had already felt that women were intrinsically related to romance and love, now there was a further feeling, an aesthetic appreciation, a sexual awareness, a desire.

* * *

On the last day of this holiday the local community held a fair that went on into the night. The proprietor cooked ring donuts and shouted out that he was going for a world record. I felt excited to be part of such an event, but then my mother told me he was joking and not realising I was a fool I felt quite disappointed.

In 2010 when I was looking around the shop with a view to buying it I spoke to a local man who remembered those days, when there was a sense of community, and said it didn’t exist anymore.

This lack of community has been around for many decades now so it’s not surprising that Facebook has become so popular because in its own way it’s creating a kind of feeling of community. Even in the sense of my neighbours I’m linked to a few on Facebook so there’s a type of extra dimension of relatedness that exists between us.

* * *

The Centre of my body is an interface too. It is where different worlds meet. The internal world comes out to the external one and it is where I can physically manifest “connection” with an “other”. I’m not sure if I should spin the middle of my body, I might end up getting arrested. But it is important in terms of procreation, of making love, of digestion and ridding oneself of waste. It is where the material world and the spiritual world meet. It is “between”. It is between my head, which attempts to connect spiritually and my feet which touch the ground.

* * *

When she walked through the door, she didn’t look as I had remembered at all. We got another drink and sat down to talk. A big rust coloured jumper, blonde hair, brushed back, a bit out of breath.

“Hi, sorry I’m late”

“Yeah, you should be” well I didn’t say that… instead I said “Don’t worry, what would you like to drink?”

“A large white”, god there’s so much one could say to that, but instead I waddled over to the bar, and chatted up the bar maid.

* * *

Above the knees my legs are as normal, but below them they are about 5 inches shorter than they should have been. Two bones normally hold the ankle joint in place for most people, but I only have one bone there. (My lower leg is thinner as well as shorter.) Maybe my disability or the surgery that was performed on my legs caused my lower legs to the stunted, but perhaps that was for the best.

Had my lower legs been longer with just one bone, then possibly they would have been more brittle. Also being short may help me with dealing with the world with short arms – except in Supermarkets of course, where I often have to scramble out of freezers I’ve fallen in to, or get released from my mountain climbing harness when hanging from top shelves. Still even then the frequent approaches by women offering to help me “with anything” makes it all worthwhile -.

My legs are a metaphor for seeing the positive in what appears to some as negative. My legs acted as arms and hands when I was young, as a teenager and young man they powered me around on a bike, they protected me in fights with kicks, they wrapped around the women I wanted to hold in bed. My legs are a symbol for being more than what we are defined as.

* * *

Holiday 3 Bournemouth

There’s a photo of me sitting in wheelchair in Bournemouth , this was mum’s bright idea for dealing with the steep hills there and my legs. I don’t look very happy in the photo, it wasn’t so much that I felt bad about being in a wheelchair, more a case of it not being true. It’s like when people say “so this must have been Thalidomide” whilst nodding at my arms. What difference does it make to me whether it was or wasn’t, it’s just a need to be accurate that makes me correct them on the matter in hand. However there have been many times in my life where I was quite happy not to be too accurate, namely with girlfriends and the police.

So I’m on holiday literally being pushed around by my mum, and occasionally creating an impression of a miracle occurring particularly when I managed to get out of the wheelchair for a quick stretch. For me the though the highlight of the holiday was watching my mum’s friend, Jackie who was staying in the same room, getting changed in front of me.

“Maybe I shouldn’t undress in front of Simon”

“Oh don’t worry Jackie, Simon’s too young to notice” my mum thankfully reassured her.

“He doesn’t look too young, he can’t take his eyes off my body”

I look away and pretend not to look at her.

Apart from that, this was a typical British holiday: guest house; beach; befriending other beach dwellers; playing with the sand; paddling in the sea; guest house dinners; TV and bed.

One family we made friends with had a beach hut, which we got invited in to when it rained. The “family” consisted of woman, her husband and two sons. 9 months later mum and I would return to stay with this family, but by then the father had died. His sons would then show me the porn magazines and weapons he had in his chest of draws and then for fun we threw tissues out of the window which we’d watch float down the street till they’d finally tumble to the road… we did this until the whole box was empty and we saw our mums walking up the tissue covered road, created unbeknown to them by their artistic off spring. Perhaps the boys meant it symbolically, like they wanted the tears to stop falling or maybe it was just simply interesting o watch tissues float away on the wind, and then to see our mark upon the world.

Bournemouth held a moment of significance though. Sitting on the beach near me was a deaf girl, and as we played together and communicated with each other by drawing in the sand I felt a sense of connection with her. I can’t explain “connection”, how is it that we can we know without actually knowing someone that we feel right with them immediately but it happens. Even today I occasionally meet people I feel right with from the start and I can’t fathom where it comes from.

* * *

January 2008

We sat down next to each other on the pub couch. I asked her about her life.

“You’re different to other men I’ve met?”

“Is that good?”

“You’re interested in me, most men just tell me about themselves.”

I laugh, “Funny most people think I like the sound of my own voice too”

“So is it just a way of chatting women up?”

“Maybe, but actually I don’t feel like talking about myself right now, it’s not about showing you my CV. I mean you can go online if you want to find out about me.”

“I already did”

I laugh and say “It’s about getting on, connecting, being interested. Funny when we met I felt a powerful draw towards you, something in your eyes, but now we’re here chatting, maybe it’s just a friendly connection.”

She put her hand on my thigh.

“I don’t know” she said.

I could feel myself feeling turned on. She leant across to me and kissed me.

* * *

Holiday 4 Jollymead – Dartmour

My last holiday in 1976 was to Jollymead, the pace on Dartmoor . Sue (not the same one as in 2010) was there, but so too was another boy. He had no hands. As the week progressed, my need for Sue pushed her towards the loving arms of this “interloper”. So much so that we had two fights. One in which he put his stumps around my throat to strangle me, but given the missing fingers this turned out to be futile, so I pushed him off. The second fight was far more spectacular and involved a few moves I’d learned from some American TV series. This involved him running at me to push me over and by falling backwards and kicking upwards sending him flying. He got up, grabbed a stone and as he pulled back o throw it at me Robbie, the supervisor, intervened. Needless to say, Sue went off with him and I went home heartbroken.

* * *

My Feet

I was born with two feet, but now I only have one, more about that another time. My remaining foot is twisted and only has four toes. My other foot is artificial. My feet are a reminder to me of my limitation and my mortality. The foot that’s gone is a part of me that has died and is no longer here. Its absence is both a reminder of a spiritual world and a very mechanical physical one. Mechanical in terms of my prosthesis and the mechanics of my nervous system which tells me I can still feel my foot even though it died over three decades ago.

My feet connect me to the world, they get tired, they ache, they are my trusted steeds, they remind me that I am human and keep me firmly planted to the ground.

* * *


When we leave the pub we walk to my car and I drive her to hers. We kiss goodbye and it feels good. We will see each other again, I just know it.

* * *

In the summer of 1976 I became sexualised, I wasn’t really sexually aware though. I didn’t know what it was I really wanted. I just knew I wanted something. A new Era shot up in to the sky and is still arcing above me.

I would soon be starting at a new school again, I’d been here before but it wasn’t quite the same as last time.

A week before my new school started I got up early, put on my new school track suit and tried going for a run, but no sooner had I got around the corner than I started to feel out of breath and my feet started hurting – they were both real back then -. I had the right clothes but something wasn’t quite right. There was my idea of me but I was pushing up against reality and it hurt and this was the beginning of another arc, the arc of self awareness.

* * *

2010 August


I’m in The Chelsea Arts Club and Paul McCartney is chatting to me. I just find out that a woman I’ve been flirting with is his wife, so I’m feeling a little uncomfortable. Lots of people are coming up to him to ask for his autograph. I look at them all and tell them off for being rude. Then I ask if he’d like to do a bit of song writing with me.

As you can see the Arc of Self Awareness still has a long way to go before it reaches its peak for me.

* * *

Go to chapter 19

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