@aspiedelazouch – Who I am

(n = 1) I am not reliable evidence

I have started grinding my teeth. Neither do my children know, nor does my wife speak of it. My dentist, however, could not overlook it. Such are the torments of Hell, as Matthew assures us; I am there, in Hell it seems, because of certain disputes at present between myself and… whoever. I am there because a rage has descended on me. I am there because I have ceased to talk about the rights of the disabled and started to defend them, with such weapons as I have, in such places as I can. I am there because I have learned to know myself and in doing so I have sadly come to know others better than I did. I am there because all the good intentions in the world cannot hide the fact that we have embarked upon the sullen castration of a system once celebrated as an emblem of our advanced society. I am there because I have invested myself for so long in our provision for children with special educational needs that I cannot bear to see it rendered impotent. I am there and I am staying.
~

“collective fear stimulates herd instinct, and tends to produce ferocity toward those who are not regarded as members of the herd.”

Bertrand Russell, “An Outline of Intellectual Rubbish” (1943), published in Unpopular Essays, London: Allen and Unwin, 1950

I have never been part of the herd. Whether it’s cause or effect, I have tended to identify myself by diverse characteristics: I draw attention to myself as Jewish, as someone with Asperger’s Syndrome, as an avowed but dissenting Catholic, but always as an individual. I regard other people in the same way.

Edwin Lemert used the term ‘deviation’, “to designate such processes as criminalization, prisonization, ‘sophistication’, ‘hardening’, pauperization, addiction, conversion, radicalization, professionalization and ‘mortification of self’. All of these speak in varying degrees of a personal progression of differentiation in which the individual acquires: (1) morally inferior status (2) special knowledge and skills; (3) an integral attitude or ‘world view’; and (4) a distinctive self-image based upon but not necessarily coterminous with his image reflected in interaction with others.” Okay, I haven’t been imprisoned. But the rest… Always, in my 23 years of teaching, those conversations which have most engaged my teenage audience have been concerned not with what we had in common but with what kept us apart and what makes us individuals; the only exception being when I talk with students who have the same spectrum diagnosis as I do, a diagnosis which keeps us – together – out of the herd.

I have adopted deviation as a process – or even a lifestyle. To be completely frank with you, this is not news. I have been scraping away at various parts of myself for most of my life. My brother, to share another truth, has been doing the same and inreal rather than metaphorical terms since a combination of chronic eczema and Asperger’s took hold in his childhood. Either condition could have contributed to the effect in him of what Charles Horton Cooley termed the “looking-glass self”, a predisposition to react to others according to how the individual thinks he or she will appear to them. The result can be either pride or shame but in both my brother’s case and mine there was only shame.

~

I am twelve or thirteen and my trousers are around my ankles. One of my testicles is in good hands, the hands of a renowned paediatrician who is concerned about my growth. Before they can treat my asthma with a steroid inhaler they need to know if my growth may be affected by it. Until now, I’ve had a coal tar lamp by my bed. My great uncle passed away on a pavement at the age of 40 with the same condition, a fact of which I am already aware as I stand, cupped, in London’s famous Hospital for Sick Children. They don’t treat my asthma here: I have to go to The Brompton for that. No, here what concerns them is that I am extremely small for my age, with a very large head. There are no photographs of me on display at home: my mother has seen to that. It will be years before I begin to notice the few which exist, of my sister holding my hand as we stand on a riverbank, of me looking uncomfortable on a hot day. As I write this I realise for the first time that almost all the photographs of me were taken from behind, so that I would not have been aware. My mother did everything for a reason. She was highly educated. She had read the philosophers, knew Sartre backwards (in French) and Mann (in German); of Jewish heritage, she converted to Catholicism while studying at the Sorbonne. It was her stringent view that in this world we are not entitled to anything. She found the evidence of that in her career: in her twenties, presumably after some outstanding (but possibly ungraded) lesson observations, she was offered the Headship of a girls’ grammar school on the condition that she renounce marriage and maternity. She declined the offer. Her father had been a Headmaster without any such hindrance. Once, during my ‘difficult’ teenage years when I became very depressed (the ‘looking-glass self’ period), I asked her about existentialism, knowing that she had studied it and she knowing that I was reading Sartre. She offered a throw-away remark: “We’ve been there she said scathingly, “and it doesn’t work.”

I was telling you about my testicles. Next to one, an amber-coloured model is held like a tiny but significant memento from a rugby match. It has a number and so does each of the others on a long shoe-string. They range in size from the handsomely large down to – well, the one next to mine. Today, it transpires, I have not moved up a testicle. I am still the same testicle I was last time I met this consultant. His disappointment is faintly audible. It would evidently be very satisfactory if I were a bigger testicle each time but that has not been happening and I’m not sure if or how I can make it so. The student doctors look concerned. I am not sure what size testicles they are and even at my young age I have figured that this information will be withheld. So, for now, it’s just my testicles on show and they’re not prize-winners. Along the corridor in this Great Ormond Street clinic is a large and airy room which I visit on each occasion. My job is to stand, naked, on a cold metal turntable while the guru and his many shishya nod and mutter. Remotely, the turntable completes quarter-turns as photographs are taken (my mother is not in the room, or even aware). Behind me on the wall, a huge printed grid calibrates my slothful puberty so that, when they examine the photographs, they can confirm that the testicles don’t lie: I am, by any criterion, small. This data is added to the crucible of medical knowledge so that I can be labelled on their graphs as an outlier, an anomaly. My balls may be on the line but they are not on the line of best fit.

~

I have had chronic brittle asthma almost since birth. At 37, during a fairly routine chest infection, my breathing was so poor I lost consciousness. The paramedics parked up outside the house and tried for fifteen minutes, without success, to improve my condition. In ITU I was intubated and sedated, the gas seeping under my skin so that my shoulders bubbled and blistered during the night. My wife was called in some hours after I was admitted, to be told they would be switching me off. I had stopped breathing too long to survive. While she waited in a side room, the consultant stood by my bed, filling in the time of death on a clipboard. Apparently a nurse spotted my finger moving: the consultant’s pen hovered.

~

Subsequently I found my memory had been affected, which impeded my work. I was a Special Needs Manager for a Local Authority. Where previously I could remember the details of several hundred children’s education at a time – their needs, their school, their transport arrangements – now I could only remember a few. Most files had to be read and re-read laboriously before I could make a decision. I felt out of touch and ashamed. However, my verbal skills remained intact and I was increasingly delegated to appeal hearings at the old SEN Tribunal. It was probably this which made my ‘traits’ most obvious: exhaustively constructing and rehearsing arguments, many superfluous, from the tiniest details; not sleeping (or sleeping in my clothes, which is still a problem even now) for days before a hearing. I used to visit not only the schools in question but sometimes the homes, too. On one occasion, seeing an enormous house number on an autistic child’s front door reminded me what these disputes were all about: the struggle to make society understand just how different people’s needs can be. In that particular child’s appeal hearing, I waited for the right opportunity and let slip some detail unhelpful to my own case. I think the Chair grasped what I was doing: his eyes darted across the table at me, quizzically, and then he seemed to take his cue, turning this new evidence on me: “So what you’re saying is…” I thought: “Just give this child what he needs and send my employer a message.” Where systems fail, eventually people make their own justice.

And at that point I knew I could not continue serving the system. Someone dared me to apply for a teaching job in a Pupil Referral Unit and that was what I needed; and, from there, back to mainstream but with renewed purpose. In my 40s I felt I could understand everything: I had flashes of rage that gave way to compassion. I felt explosions in my head. I read the news: the horror of rash crimes – murder, acts of obsession and domination – became coherent and comprehensible. Nothing surprised me except that some people do not surrender to these impulses. The shocking became normal. So it should: to reject human behaviour out of hand is to refuse to come to terms with it. I found that, the less I could remember, the more I understood. Living in the present, less reliant on memory, silenced judgement and invited curiosity: Time is a river without banks… Ah yes, Chagall again: why do I love Chagall’s art? Because in his hands, and through his eyes, the body loses its ridiculous importance. He sees the body in its place, whether it’s a pogrom or a garden, on a roof or in the air. It is the position of the body in the composition which communicates his feeling for the subject. Around the human subject in any work by Chagall will be sheep, cattle, chickens, some fish, an ass. They are the equal of men and women. They may be obscured, they may be distorted, but they are there and they speak to us like a chorus. They have their being with us. Even where fire rages, even where evil encroaches on Chagall’s scene, the innocent imperfection and the clumsiness of human and animal forms is prized. I would happily be any creature in one of his pictures. I could even bear to be looked at. No one is measured in Chagall’s world; there is no ‘looking-glass self’. Even his crowd scenes are assemblies of individuals possessing dignity. The Chagall menagerie is inclusive and humble. Let us not measure each other by the metric of the body, its conformity, its abilities. What is important is to give each one its place in the composition. And now we are going to have to fight for that because it is under threat again. It is under threat because the changes beneath the surface are more distinct and more far-reaching than those which are trumpeted above. That is why I am raging. I am angry beyond words.

~

This post was inspired by many things: partly, I felt compelled to write after discovering @abstractLucas and her beautiful blog (if you don’t know the story of Smiler, make a mental note to go there next) because she made me think about difference; partly, I was irked by the debate around research data and reliable evidence; and partly I was prompted by events old and new in SEND, about which I wanted to say something. I still do…

 

References

Cooley, C. H. (1902). Human Nature and the Social Order. New York: Scribner.

Lemert, E. M. (1951). Social pathology: A systematic approach to the theory of sociopathic behavior. New York: McGraw-Hill.