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Authors: Adam Mars-Jones

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Civilisation and the cripple
 

Raeburn took a kindly interest in me, and said he would give me private walking lessons. So at eleven o’clock most mornings we met in a classroom for twenty minutes. Supporting himself with an expertise which was beyond me, he helped me in the gentle art of challenged walking, telling me I was quite safe, not to worry, and assuring me I could not fall. His touch was very tender and I felt safe with his strong arms making a little cage around me or a bar for me to hold. I remember I could touch and hold that strong arm-sinew as much as I liked. Looking back, I realise he must have kept an arm free to hold on to his sticks, but I don’t remember it, and fortunately at that time logic drifted in and out of my world.

When the classroom was busy we met instead in his study. One day he caught me looking at a book on the shelves whose spine I could read. Its title was
Civilisation and the Cripple
– poignant juxtaposition. I don’t know if he was referring to that book at all, perhaps even
paraphrasing
, but at that point we had by far the most searching general conversation that I had had with anyone to date. Everyone was always telling me I was clever, except the eleven-plus examiners, but no one before him treated me as an adult. I suppose he was using me as a sounding board for his own inspirational little theories.

I remember him saying, ‘You and I are the judges of civilisation, in a way. If civilisation means anything it means looking after the weak, not getting rid of handicapped children by exposing them on the mountainside, as I’m afraid the Ancient Greeks did, for all their
culture
, and not by throwing useful human beings in the dustbin, as we sometimes do. Funnily enough the Aztecs – those are the chaps who used to live in what we now call Mexico – uncivilised people in many ways, but they looked after disabled people very well. They had the idea that people with … um, with deformities, were holy in some way, you know, dear to the gods.’

Nothing could have been better calculated to get me wildly excited, what with my blocked dreams of religious vocation, an occupation where it seemed my face fitted only in the little book where uniforms folded neatly down round a stuck-in photograph. ‘So were the
handicapped
people made into priests?’ I asked. ‘I’m not sure about that, John, but I’ll try to look it up for you.’ Perhaps he did, but he didn’t ever mention the Aztecs to me again.

Since then I’ve learned that Aztec enlightenment had its limits. They had a rather narrow definition, as it turns out, of the value of the disabled. Not so much intrinsic worth as usefulness in a crisis. The disabled were emergency supplies of sorts. The Aztecs looked after their deformed citizens with great care until there was a solar eclipse, and then put them right at the top of the list of the human sacrifices, to have their hearts cut out and their skin removed. A compliment of sorts, since only the choicest hearts and freshly bleeding hides could tempt the day-star out of hiding, but not easy to take in the right spirit.

Raeburn had changed tack before I could ask any more awkward questions about the Aztecs. ‘I know you’re interested in animals, John – well, sometimes naturalists find a bone, a lion’s leg-bone, say, and they can tell by looking at it that this bone had been broken but healed. What they can tell from that is that the other lions in the pride looked after the injured one, feeding it when it couldn’t hunt for itself, or else it would have starved before it could recover. Of course there are animals that have no feeling for their fellows, perhaps most of them don’t, but human beings do. They just have to be told how best to help. And if you and I in this country aren’t helped to make the best of things then I don’t think much of anything else our country does.’

So we were judges of our society, not the judged! This was an
intoxicating
idea. I could go round with a little book, noting down who had helped me and who hadn’t. Mr Turpin at CRX had said I could be a clerk, which I hadn’t fancied – but it would be a different matter if I was attached to the Recording Angel’s office.

My karma banks at Coutts
 

Most thinking about disability that I knew at that point, and even mine, circled warily round the idea of punishment. Miss Reid had started it all by going on about wheat and chaff and tares and Hell, even if she had relented when she saw how miserable she made me. And still, what she was really saying was that I would scrape into Heaven if my life on earth was enough like hell. What sort of merciful God would arrange things like that? The whole thing was a big mess.

Mum and Dad had confronted this question in a conversation once, when I wasn’t quite out of earshot. Either that, or my memory has decided to have a part of my thinking played out in the voices of the people I knew best.

‘I’m sure you know, m’dear, that many people think of handicap as a sort of punishment …’

‘He’s only a little boy, he hasn’t
done
anything!’

‘Don’t jump down my throat, m’dear! I’m only saying what some religious people think, I didn’t say I agreed with them. It’s not an attractive idea, it may be a lot of nonsense, but that’s how some
people
think.’

‘But, Dennis, he’s done nothing. So perhaps it’s our fault? We’re the ones being punished?’

‘It’s not so bad, m’dear. And I don’t know what you’d do without him …’ Dad gets marks in my book for blocking Mum’s move to take on all the guilt of the world.

Disability as punishment for actions in a previous life – there’s no point in pretending there isn’t a side of the mind that responds to these punitive simplicities. I can’t seem to muster the proper outrage at such suggestions.

Since then, though, I’ve discovered a different application of the concept of karma. By this interpretation, disability at birth or in early life is a highly specific condition. It relates to an earlier life in which one displayed mystical powers. The physical difficulties are only the residue of a sage or mage over-taxing his spiritual strength in that previous life. Not really a punishment – more of an overdraft, and on a rather swish account at that.
My karma banks at Coutts, don’t you know. Lovely people – they’re very understanding. And even in this day and
age the statements are written by hand!
I find this idea terribly attractive, but if I claim to be open-minded, and I do, then I can’t dismiss the harsher doctrine either.

I felt very close to Raeburn after our talk about being the judges of civilisation, but on that same morning I said something I regretted for a long time. It wasn’t what I said, exactly, but the way I said it. Raeburn asked me if I could feel below my waist. Proud that the sense of touch was one area where I wasn’t disabled, I set my chest out proud and said, ‘I should hope so, Sir!’

I hoped to increase my standing in Alan Raeburn’s eyes. He stood there saying nothing for a long moment.

‘Some people can’t, you know,’ he said at last. I looked at those grey-blue eyes, which didn’t seem to be focusing on anything in the room. I had disappointed him by thinking only of myself. He must have had hopes of my showing a stronger streak of enlightenment. I had failed the very first test. Obviously it was right for me to tell the truth, but why couldn’t I have said, ‘Yes, sir,’ without feeling the need to boast?

Secret lovers
 

It was then, all the same, that Raeburn and I became secret lovers. Our love affair carried me through term after term in that austere school. Of course I don’t mean that any impropriety occurred between man and boy. We were secret lovers, not in the sense that Romeo and Juliet were – because of the consequences if they were found out – but the way Cyrano and Roxanne were secret lovers. Because the
infatuated
party didn’t dare to say anything and the infatuator (if that’s the word I want) was entirely in the dark. Our love was the purest sort of secret, so secret that he didn’t have a clue.

I turned out to be better at hero-worship than at friendship. My experience of the girl gang at CRX had made me suspicious of groups. I loved the story-telling after lights out, but I didn’t actually become particularly close to my dorm-fellows. I enjoyed the prestige which performing brought. It was possible for people to listen in from the corridor outside, so that I might have a larger audience than the obvious one. This hadn’t escaped me. After a few weeks of term one of the teachers suggested that I study German, on the basis that my accent was good, and really how could he know that except through being told by someone who listened in?

I was vain of my closeness to Raeburn and boasted about it to Roger Stott. He was perhaps more surprised than impressed. It was his idea that Raeburn gave priority to the pupils who had been recently disabled. Certainly they were the ones with the gravest
problems
of adjustment.

It made sense that they would be Raeburn’s special domain because he belonged, more or less, to their category. His adjustment was more directly inspirational for them than for us. Those of us who had long since passed the point where we had been disabled for half our lives just got on with it. None of us envied the recently disabled for their past privileges, and we tried to be patient with their present
resentments
.

There was a caste system at work in the school, but one with a great deal of complexity. Seniority in the school was a factor, but much less so than difference of diagnosis.

The obvious distinction was between the ABs and the others. For all I know there were nuances of asthma that determined relative
status
among the ABs, but from underneath the divide it looked pretty much like Us and Them. Among Us, though, there were any number of distinctions that could affect your place in the hierarchy. Those without wheelchairs looked down on those who had them – even if, like Trevor Burbage the human suitcase, they needed so much
support
that their upright status was more or less fictional.

If you were in a wheelchair then it buoyed up your status if you had sensation below the waist, like me and unlike paraplegics. Paraplegics among themselves perhaps preened themselves on the strength of their arms. On a boy-racer, what-car-does-your-dad-drive? level,
electric
wheelchairs were more desirable than ones without motors, but they went along with the more severe difficulties, so their social meaning wasn’t altogether clear-cut.

Spastics – there was no respectful ‘cerebral palsy’ label then – who were free of uncontrollable spasms out-ranked those with the more extreme type of the condition, the one named athetoid. Those with degenerative disorders were ranked lower than those of us without. We almost set up a new Us and Them barrier at this point, to make it clear that their futures were so different from ours that it was idiotic to lump us together. The degenerative boys lived in their own
narrowing
tunnel.

Raw social status, class as the world saw it, was a minor issue. We may vaguely have known that Paul Dandridge, the one who did the ‘frog breathing’ and needed a respirator at night, was from a very poor background, while Abadi Mukherjee in the same dorm had parents who were terrifically rich (they ran a large Indian business called the Appa Corporation), but we didn’t care. I imagine the co-principals cared to a certain extent, since the Mukherjees paid full fees, but from our point of view, Abadi out-ranked Paul by virtue of the mildness of his polio. The mildness of his life outside school (the first-class air travel to Bombay in the holidays) was neither here nor there, though I suppose we noticed the lavishness of his pocket money. If it meant one thing to us, India meant poverty – yet Abadi was the richest boy in the school.

If an AB who didn’t often have to use his inhaler was at the top of the caste system, and a boy with muscular dystrophy was at the
bottom
, then Still’s disease gave me a fairly reliable, not unduly
fluctuating
status somewhere near the middle of my world. An affinity of physical condition could give me more in common with a given person than brute closeness in age. Given that he was a year ahead of me, and also an AB, Roger was remarkably friendly. Age gap plus
mobility
gap should have created something of a personal chasm, but his good nature bridged it.

He always tied my tie in the mornings. As time went on the exact nature of his good looks became clearer. He bore a striking
resemblance
to George Harrison, except that the Beatles had hardly even formed at the time so it didn’t mean anything yet. As the decade developed, he found himself benefiting not only from good looks but the extra dividend of looking like the kid brother of a new kind of celebrity.

Dry bed-wetter
 

There was a hidden aspect to our friendship. Roger and I were both bed-wetters. I had grown out of this bad habit very recently, but on some deeper level I wasn’t free of it. There’s more to being a
bed-wetter
than the physical symptoms. Part of the condition is the pain of being picked on and being made an object of derision. I was a
fellow 
bed-wetter in spirit if not in fact. I was a dry bed-wetter like a dry drunk, someone who could fall off the wagon any night.

Judy Brisby gave Roger the harshest, most abrasive scoldings. Her words were caustic soda, they made his face go bright red, not a healthy skin tone but one denoting damage. The epidermis was
outraged
. Roger had to change his sheets while she watched. She seemed to enjoy humiliating him in front of younger boys. All the while she barracked him about the cost of laundering his sheets. You would have thought it was coming out of her own pocket. To hear Judy Brisby talk, Roger was wearing the sheets out and should be
thoroughly
ashamed of himself. As if that was the problem, Roger not being ashamed enough.

One boy who was always very friendly to me was Julian Robinson, who had polio, but I had no idea of how to behave nicely back. It should have helped that he too had a father in the Raff. In fact Dad knew Julian’s dad and said that Robinson was a good chap. He must have meant Robinson Senior, but it seemed to follow that Robinson Junior was a good chap too. I was rather under the sway of Dad’s view of things at the time, but in a rather perverse way. I decided to feel superior to Julian Robinson simply because my dad out-ranked his.

Julian seemed rather a little boy who mostly sounded like a little girl. I’d prayed to God to send me a special friend called Julian, but this wasn’t the one I had ordered. He was gentle and quiet, not the sort to push himself forward, full of secrets and fantasies. I managed not to notice that we might be rather compatible, and dismissed him as a kid.

At the end of the second term a number of us had a pow-wow about things to do when we all came back after the holidays. Lessons were so deadly boring it was unbelievable. The teachers were ogres and sadists. We all said so, and perhaps I was the only one who found many of the lessons thrilling, and some of the teachers lovely. I said, ‘Who’s got a chemistry set? When we come back, why don’t we all bring our chemistry sets with us?’ The idea made an instant impact. I had visions of lovely smells to come, much pungently holy smoke. Smoke always a mystical substance, however foul.

Life in Bourne End was more fun now that Peter was strong enough to push me greater distances. The funny looks we got when we were promenading round the town made us at first subdued, then mildly defiant. We started singing an old song that had been played to death on the radio. It went, ‘Edie was a lady, although her past was shady …’ We sang it all round town, but it was more fun to ramble a bit further.

Just beyond the border of the Abbotsbrook Estate was the railway track. It was always a thrill to cross that line, in case the train came speeding along. We heard stories of boys putting pennies on the line, waiting for the train to come along and flatten them till they were paper-thin. Peter had seen such transubstantiated pennies, and very much wanted to own one. Mum absolutely forbade it. ‘If a policeman sees you’, she said, ‘you’ll have to go to prison, or at least a Remand Home.’ I knew by then that prison would always be a hopeless dream on my part, but I agreed to set Peter a good example. Besides, there were other ways to get into trouble.

A little further along there were some house-boats, some of them very smart, and further on there was the UTSC, the Upper Thames Sailing Club, which was ultra-posh. The yachts looked so very pretty that it was a kind of meditation to go and watch them, but there was a sign with a stiff warning, that only permit holders were allowed Past This Sign. Very official and daunting. Peter said it would be all right once they ‘saw the wheelchair’. People seeing the wheelchair always helped. They’d let us in to watch the boats any time we wanted. The wheelchair was an Open Sesame – but not to this Marina of Wonders. They saw the wheelchair and still they told us to clear off. We were just as bad as other boys, undifferentiated vermin, and in retrospect I take this as a compliment. I wasn’t singled out.

Sometimes when the coast was relatively clear we’d venture in. Once we were spotted and shouted at. Peter speeded up, since this was obviously one of those occasions when ‘You there, come here at once!’ meant ‘Run like hell’. We ran all the way through the UTSC, past the warning sign posted to deter vermin coming in the other direction. Now we were in exile. We couldn’t return the way we came and had to go home the long way round. We were expecting a
scolding
from Mum, but she turned round and rang up the UTSC to scold
them
. She said we were merely doing what all boys do, all hearty and adventurous boys (and I admit I glowed at hearing this description). If anything had happened to us, she would have held the Club entirely responsible for its callous attitude. ‘Haven’t you ever been young?’ she wanted to know.

One day we found a twisty road that wound up a steep incline. How Peter managed to push me up there I’ll never know. I was no great weight, but the Tan-Sad was a real handful. We thought if we just carried on we would soon reach the sea.

We took with us an
I-Spy
book about the countryside, wanting to identify many unusual things, so as to get a high score and perhaps send our findings to Big Chief I-Spy who would send us a certificate and publish our names if we were the champion observers. We longed above all things to spot a Colorado beetle, not only because it carried a whacking great point score but because you had to report it to the police if you did.

There was a pretty spooky feeling about that steep and winding lane, and particularly about a little house some way up and on the right. We called it the Witch’s House, and the rule was that you weren’t allowed to speak until you had passed it. Otherwise you’d wake the Witch and she’d cast a spell on you. After we had passed the Witch’s House and it was safe, Peter would open his mouth and sing loudly, ‘Meadie was a lady’ and I sang back ‘… although her past was shady’. Edie had become Meadie, for some reason.

We would go up Elm Lane and into Chapman Lane towards Flackwell Heath. There was a haunted wood further up on the left where we used to go and make a den. One day Peter was grubbing about in the leaf mould and found an old wooden foot. It was rotting away. We were sure that Meadie had in fact had a false leg. She’d left it in this wood (Meadie had now become the Witch). She was bound to be coming back for it, probably any minute now. We gave
ourselves
a good scare, and Peter got me back down the twisty lane as fast as he dared. We vowed never to go back there alone.

Instead we took Dad with us to show him the haunted wood. We saw no evidence of witchery – we couldn’t even find Meadie’s wooden foot again, which made us think she’d taken it back. Instead we saw something just as other-worldly and far more beautiful, a great cloud of cinnabar moths fluttering in dappled sunlight. Dad explained that there was plenty of ragwort there (genus
Senecio
, family
Asteraceæ
,
jacobæa
the most likely species), the exclusive host plant of the cinnabar moth’s caterpillars. There must have been a massive
hatching
.

Peter rolled his eyes when Dad explained about nature, but I couldn’t get enough. He explained that ragwort, which is related to groundsel, is poisonous to livestock, especially horses – it attacks the liver. The plant has a bitter taste which alerts animals not to eat it, but still it can get through their defences. Either a single early leaf (in which the bitter taste may not have developed) is eaten as part of a mouthful of grass, or else a clump of leaves is eaten and then spat out, but then inadvertently returned to by the same animal or another. The bitter taste dissipates once the leaf is dead, but the toxicity remains.

Meanwhile the cinnabar moths, immune to the toxin and also impregnated with it, broadcast with their beautiful red colour the protective status of their poisonous, their magnificent untouchability.

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