To all the mums and dads of autistic children…

Recently I had a long and wonderful lunch with a dear and close friend. We go back many years, although we’ve only regained contact in the last 4 or 5. During our long years without seeing or hearing from each other – as I discovered when we met up for the first time after that period – my friend had been widowed in excruciating circumstances, and had also had 2 children. Her eldest child is towards the extreme end of the autistic spectrum: he has no language, and communication with him is a constant and formidable challenge.

This post is, in one sense, not about autism at all. In common with, I suspect, the vast majority of people, autism is something that I’ve heard of, have some rudimentary knowledge of, know is an increasingly common diagnosis, and which has been brought to my attention over the last few years mostly in the context of the long and fractious contention over autism’s alleged connection with the MMR vaccine. That particular dispute may, in the minds of just about everyone except some parents of autistic children, have now been finally resolved, but its genesis is too easily put down to parental gullibility; parents want to be able to blame something for their misfortune, and have therefore clutched with an almost pathetic desperation on an unscientific and unproven myth. Thus the narrative goes.

The reality, I think, is rather different. There is perhaps one small grain of truth in it though, and that’s contained in that word, desperation. And I have to say that if I’d had to go through what my friend has gone, and is going, through desperate is exactly what I’d bloody well be. What I probably wouldn’t be, and what she is in spades, is resilient, courageous, determined, tenacious, committed, resourceful, beautiful and inspiring. She’s also, on occasion, angry, despairing, lonely, isolated, fearful, and very, very, very tired.

Much of what she endures cannot be mitigated, cannot be diluted with support, or money, or anything else. She knows that. But she also knows that many of the challenges she faces have nothing intrinsically to do with autism at all, just like this post. They are the thoughtless, careless consequences of unimaginative, under-resourced, ill-trained staff who simply don’t understand how difficult it is to cope with an autistic boy in his mid-teens, and who, doubtless unwittingly, make an already almost unbearable situation maddeningly worse.

Autism is characterised by, amongst so many other things, the fierce need for predictability. So to be phoned up to be told that a new carer is going to accompany her son to his special school tomorrow – someone he doesn’t know, won’t recognise, won’t be able to communicate with – is an unbelievably disruptive and aggravating experience. It requires, yet again, an explanation of the blindingly obvious to an agency that should not require such an explanation. It takes yet more energy. Yet more frustration. Yet more anger.

When her son was approaching school age, my friend had to spend months and years fighting for adequate provision. And then she had to do it all over again when he came to secondary school age. And when he reaches 19 and he can no longer go to his secondary school? Who knows.

But this constant fighting, constant anxiety, constant avoiding or negotiating of often unnecessary obstacles, is only a tiny part of the challenge she faces. The big, almost inexpressible, majority of that challenge is existential. It’s magnified in her case by the loneliness and loss that comes from being widowed. One thing she really doesn’t have time, or energy, for is to start on the intricate dance of meeting someone, of romance, of all that jazz. For sure that magnifies, but it doesn’t create the angst of being the parent to an autistic child. That comes from the tragedy of the condition’s imprisonment of one’s child; from its intractable and never-ending nature; from the pain of never being able to enter into one’s child’s world, or ever really understand what his world is like; from the anxiety of suddenly being the subject of unprovoked, hormone-fuelled assault.

I simply can’t adequately express my admiration for her fortitude, her courage, her unquenchable sense of humour, her seemingly bottomless well of resourcefulness and energy. And I can never fully appreciate her loneliness and her profound and ever-present – if always hidden – sadness.

She’s not alone, of course. And so this post is one small attempt to express something on behalf of all the mums and dads who daily have to face the challenge of their autistic children. It’s not all gloom, and there’s joy too. But most of us simply don’t have a clue. It’s time we got one. It’s time we campaigned for better services. It’s time we stood up for autism.

It’s Christmas-time, and I’m off to find a fat goose

It’s that time of year again, and my thoughts turn to what sort of transport calamity may befall me this instance as I prepare to leave these shores once again. Last year it was an 18-hour sojourn on the M40, followed by a 4-hour wait in the enchanting environs of the Channel Tunnel terminal. This year it seems that low temperatures will not be the most prominent hazard, but presumably floods and gale force winds will put in an appearance instead.

But no matter. I still have a child-like love affair with Christmas, and it takes more than freezing delays or soggy driving to dampen my festive mood. So before I take my leave, and allow the blog to rest neglected whilst its author gets pissed and fat, it behoves me (as a more pompous writer even than me might have said) to wish all my loyal readers a very merry Christmas, a peaceful and prosperous New Year, and I look forward to your company again when I finally resurface some time in early January.

And if you’re not a Christian, or merely a heathen unbeliever in any faith, well, I have it on good authority from the Prime Minister himself that you’ve no damn business being in this country in the first place. Or something like that. But for you, happy winterval, solstice, or whatever, and enjoy the fulminating splutterings of ex-Archbishops and assorted right-wingers telling you that this Christian country has finally gone to the dogs.

Until next year…

Britain’s supermarket class wars

As traumatic and depressing experiences go, I suppose I’d have to concede that a visit to an Asda supermarket doesn’t really rank up there with divorce, bereavement or supporting the England football team. But nonetheless, had it not been for the fact that a perfectly blue Manchester sky greeted my emergence from one of the city’s Asda emporia, lifting my spirits and filling me with the joys of, well, Harpurhey, then I seriously think I might have sunk into a prolonged decline. I felt almost dirty, and that by dint of the mere fact that I’d spent 15 minutes in the shop’s dark, windowless interior, my health had probably been compromised for good.

A snobbish over-reaction I hear you fulminate, and you are of course perfectly correct. But reactions, even snobbish and exaggerated ones, have to have something to react to. There can be no doubt, it seems to me, that British supermarkets (or, more accurately, supermarkets that operate in Britain, since Asda is an American-owned enterprise these days) have deliberately and with great precision aligned themselves to different segments of the market, segments that are unashamedly driven by Britain’s continuing obsession with class.

Class in Britain is like one of those squidgy toys that, when you push them in at one point, simply and immediately respond by protruding at another. No matter how hard you try, every effort to undermine and get rid of our class consciousness merely succeeds in creating new and ever more nuanced class distinctions. Whereas middle-class used to mean that you at least knew what balsamic vinegar was, it now requires one to be able to distinguish between cheap and cheerful brands that even Asda might sell on the one hand, and £50 a bottle sticky confections made by Italian artisans on the other. Olive oil was once something for all classes to shove in wax-blocked ears, but now it shoots off into the stratosphere of single estate, stone-squashed, unfiltered vintages every bit as obscure and over-priced as any Bordeaux grand cru classé you might care to imagine, and to which heights only the seriously middle-class can follow.

If you thought that it was only food that differentiated the class-stratified supermarkets, you’d be very wrong indeed. Food does perhaps lead the way – sadly I was unable to purchase the matured Manchego cheese I was looking for in Asda, which seemed to be more interested in offering me garish processed “Cheddar” called, improbably enough, Mexicana, which appeared to consist of a kind of orange rubber speckled with brightly coloured fragments of peppers and chillies that were redder and greener than any pepper had the slightest right to be. But it by no means stops there. I think there’s a PhD to be had for the bright scholar who maps out a correlation between the acreage of window that a supermarket sports, and the class of its clientèle. Asda had no windows at all, and instead it was lit by a greenish and wan fluorescent glow that perhaps was designed to mask the sallow complexions of the literally benighted customers. By contrast, Waitrose shops all seem to have access to daylight, whilst Morrison’s and Sainsbury’s settle for an uneasy compromise in which the deeper one penetrates towards the in-store (how I hate that expression!) bakery the further one leaves the daylight behind.

Then there’s colour scheme. Asda goes for a perky and slightly phosphorescent green that contrives to clash with all its customers’ clothes simultaneously. Morrison’s adopts green and yellow, but at least it’s a yellow and a green that look as if something in nature might also be that yellow or that green. Sainsbury’s plumps for a strenuous orange, only partially compensated by its more sombre blue bed-fellow. Tesco has a faintly patriotic blue and red approach which is simply strident rather than symbolic. Waitrose, by contrast, has no dominant colour scheme, but flits stylishly between earthy hues which change with the food departments themselves.

Perhaps even more telling is the arrangement of the store. Waitrose, Morrison’s and Sainsbury’s seem united in the idea of putting the fresh fruit and vegetables near the entrance. It seems to give the optimistic message that if you’ve popped in just for a moment and in a great hurry to obtain something to deal with your peckishness, it might be that you’re looking for an apple. Not Asda. No, their hurried but peckish clients are clearly after a packet of Monster Munch. If you want fresh vegetables in Asda, you’ll need to have brought your hiking boots, and have a leisurely half hour to spend actually finding the stuff. As for Tesco, I can never find anything in their shops anyway.

But what is chicken, and what egg? I don’t ask this from a strictly poultry perspective, but more from a philosophical one. Are these class distinctions, so carefully defined and maintained by the supermarkets, creating and deepening the existing stratifications of our society, or are they merely reflecting and following the distinctions we’ve all made anyway? I suspect that it’s all a symbiotic and mutually reinforcing relationship in which neither is following the other, but in which neither leads, either. Although price is important, I don’t think it’s really determining. So much of our food now is comoditised, and supermarkets compete so fiercely that even Waitrose, that paragon of the middle-class extravagant shopper, is now obliged to reassure me constantly that Tesco is no cheaper. And indeed, Tesco is a bit different. I said a moment ago that I can never orient myself in their shops, and I think this is a consequence of their variability. Rather than aim for one single social stratum, Tesco seems to try and blend in with its stores’ particular class backdrops. In posh places, Tesco seems like Waitrose. In less posh ones, it seems like Asda. And of course, more than any other supermarket, it’s everywhere.

Other countries don’t seem to echo this class-based supermarket self-definition. In France, whether it’s Carrefour, Leclerc or Intermarché, the experience seems broadly the same. The same as each other, I hasten to add. Not the same as in Britain. That’s quite easy to explain though. By and large, French supermarkets still sell food. Like, stuff you not only can, but might even want, to eat. And that’s very different from all of the above.

On the horns of a disabled dilemma

The BBC Radio 4 Feedback programme today featured an attempt by a disabled broadcaster to talk about how disabled people and the issues they face are handled on the BBC’s various radio channels. The particular prompt for this was the 50th birthday of Radio 4’s flagship programme concerned with disability, In Touch. The presenter at one stage said something that seemed to me to sum up the dilemma that faces not only broadcasters, but society at large when it tries to deal with the issues of disability. Commenting on the paralympics, she wondered what coverage is given to disability sports when the country isn’t preparing to host the Olympics. And responding to one channel’s statement that they were about to feature the “heroic” struggles of some young disabled people via awards at some sort of young person of the year event, she reflected that “disabled people are not all heroically overcoming insuperable odds, but merely trying to get on with their lives.” Exactly so.

This dilemma is not restricted to disabled people alone, of course, but it is perhaps particularly acute in that context. Should there be special programming by and for disabled people that concentrates on disability almost as a subject in itself, either because the issues that disabled people face, or because disabled people are the actors (not, to be clear, actors in the sense of drama, but actors in the sense of being active) in something not specifically about disability, are the programme’s focus and raison d’être? Or should there be programmes in which disabled people happen to take part, merely because some people happen to be disabled?

I am not disabled, either in my own eyes or in terms of any official definition. I do not listen to In Touch. When I catch it, or similar programmes, by accident I generally (not without a vague sense of guilt) tune to something else or switch off. It is, I think, indisputable that special programmes for disabled people contribute to the “ghetto-isation” of the subject matter and the people. Insofar as those programmes can be seen as catering for a community of interest this may not matter. After all, I don’t listen to Gardeners’ Question Time either and feel no sense of guilt about that. But insofar as I should be concerned about my fellow citizens who are frequently subjected to all sorts of social dis-benefits quite irrelevant to those problems that flow unavoidably from their disabilities, this compartmentalisation is a bad thing. It creates a sort of moral choice about whether or not to be interested in disability when in fact I should be confronted with those matters routinely in the BBC’s output whether I like it or not.

I’m particularly talking here about current affairs, news, documentaries, and other such programming rather than entertainment or drama. Shoe-horning worthy disabled plot lines awkwardly into programmes like The Archers is usually excruciating for all concerned. It’s in no-one’s interests to provide an open goal to the “political correctness gone mad” lobby by quotas, or monitoring content with some kind of target in mind. But it is vitally important that disabled people who are “merely trying to get on with their lives” appear just like anyone else in “normal” situations, or delivering “normal” news or social insight. Sometimes this does happen, but it’s rare, and usually because something exceptional has occurred. I’m thinking of, for example, Frank Gardner appearing in his wheelchair as he recovered from his injuries in the course of duty. I wonder if he’d have been the BBC’s security correspondent if he’d had some kind of congenital or pre-existing disability. Disabled reporters generally seem as rare as hen’s teeth. Unless it’s a programme about disability, of course.

I’m not arguing against some specialist programming on this topic. But I am bewailing the corralling into some kind of quarantined space a rag-bag of disability issues labelled variously as heroic, or victimised, or simply bizarre. Of course this does a great disservice to disabled citizens. Of perhaps even greater importance though, is the way it allows the rest of us to avoid both the specific difficulties disabled people face, and the sheer normality of the fact that some people are disabled. Not that you’d know this from a cursory glance at the schedules.

A blog post for “Organic September”*

I’m not a Luddite, and I don’t think eating GM foods will damage my health: but I still don’t want GM agriculture, and here’s why

I don’t know about you, but I’m fed up with being accused of ignorance, or sugar-coated sentimentality, or some kind of generic resistance to progress whenever I read why it is that, in the view of its proponents, my objections to genetically modified food are without foundation and entirely lacking in merit.

It’s a common enough practice in the dark arts of political dispute to knock down arguments that one’s opponents have never deployed, whilst refusing steadfastly to engage with the arguments that they are in fact deploying. It’s no coincidence that this tactic is so prominent in the GM debate, since despite the apparently scientific, fact-based nature of the dispute, it is actually an intensely political argument that has little to do with science at all.

Let me begin by dealing with the plethora of straw men put up to obscure the real issues in the debate.

  • First is the hoary old business which so helpfully explains that we’ve been genetically modifying food since the beginning of agriculture, and that without genetic change we’d still be eating grass rather than rice, or wheat, or oats. Yes. Absolutely correct. 100%. And your point is? No-one that I know has ever denied this utterly self-evident fact.
  • Second is the idea that GM is just a way of speeding up the selective breeding that has produced the modified food organisms that we already know and love, and that my objections are merely the equivalent of being frightened of speed, a bit like those in the 19th century who insisted that travelling at 35mph would be more than the human frame could stand. Well, no it isn’t; and no, they’re not.
  • Third is the accusation that I’m scared, not only of speed, but of all technology and that I live, and want everyone else to live, in some kind of idealised 18th century. A Luddite who probably can’t use a computer, and who insists on using a slide rule and a table of logarithms whenever I feel the need to multiply two numbers together. Wrong. I love my smart-phone, and indeed love it rather too much, if you were to ask my wife.
  • Fourth, my ignorance of basic biology is so profound that I’ve swallowed wholesale the scare tactics of the Soil Association and its fellow-travellers, and all I need is the re-assurance that GM foods have all the nutrients that conventional foods have. I never doubted it, if by nutrients you mean the big three of fats, carbohydrates and proteins.
  • Finally, in this run-down of non-arguments, I read that my objections to GM technology are pure middle-class, western self-indulgence. I live in an economy of cheap and plentiful food, where I’m able to soak up my excessive income by paying rip-off prices for nostalgic food-stuffs, and I should be heartily ashamed of myself. Instead, I should be thinking about my poor comrades in developing countries, battling against climate change and drought, to whose benefit all this GM fervour is really directed. Excuse me whilst I duck beneath this low-flying pig.

So if these objections are ones that exist only in the minds of pro-GM zealots, what are my actual concerns?

First, political and economic. Despite all the altruistic-sounding hubris from GM commerce about feeding the world, adding nutrients to tackle deficiency disease, or creating drought resistance in climate-change stricken countries and making deserts bloom, the mundane truth is that so far at least the technology is more about patents and selling products than it is about saving the human race from starvation. Genetically modifying an organism to be resistant to a herbicide manufactured by the same company locks farmers into that company’s products. It makes 3rd world farmers dependent on 1st world technology companies. It reduces rather than increases the sum of genetic diversity, and pushes the entire world’s food production even further into dependence on an increasingly narrow range of cultivars from an already narrow range of food plants. This is adding to food insecurity, not reducing it.

Second, ecological. GM proponents are constantly saying that the novel genes inserted into the DNA of crops grown in the open environment are not capable of spreading into wild populations, or even into non-GM crops. GM plants, we are told, are sterile and cannot create modified progeny. Yet we heard last year that every sample of wild canola studied in the US now has GM markers from the GM canola grown ubiquitously in that country. It matters not whether this particular transference has any deleterious effects, but it is surely not over-imaginative to wonder about the transference of herbicide or pest resistance into wild populations. That is not the impossible scenario that the GM-mongers have constantly insisted that it is. Even if that were not to happen, one thing we know about pests is this: that they have become pests because of their ability to adapt. Pesticide resistance in pests is already well-known. Why should pests not become resistant to the molecules that novel GM genes produce in GM plants? Our experience indicates strongly that this is more rather than less likely. We do know how to minimise losses to pests though, and it isn’t via  expensive patented super-plants. It’s via much simpler things like rotation, crop diversity, avoiding vast monocultures and the like. Unfortunately such things do not bring much in the way of profits to agri-business.

But third, and most basic of all, my objections are based in biology. When plants or animals are bred traditionally, the kind of ensuing genetic change is strictly circumscribed. Reproduction is not just about molecular genetics. In higher organisms it’s also about the, er, mechanics of sex. If I smear elephant sperm on the styles of wheat flowers, I’ll have to do it for a rather long time, like eternity for example, before wheat starts growing big flappy ears. It’s true of course that “primitive” organisms such as unicellular or viral species have a much more laissez-faire approach to genetic exchange both intra and extra species, and indeed if they didn’t GM technology would be impossible. Higher organisms on the other hand have developed all kinds of sophisticated ways of trying to prevent this genetic free-for-all, and disease rather than advantage is the usual consequence when they fail. More than that, the very definition of a species is that community of organisms that can breed with each other, and produce offspring that can also interbreed.

So what, you may ask? Sex is a kind of way of maximising genetic variation whilst at the same time disciplining the rampant genetic exchange that exists in micro-organisms. Sexual reproduction has vastly increased the rate of variation and speciation, but it’s done so within limits. Evolution has come up with this elegant balance just as it has in so many different ways throughout the ecosphere, where for example the interplay between predators and those suffering predation enables both species to persist. So sex is as much about control as it is about novelty. On the one hand, genetic “data” is allowed to mingle and evolve, whilst on the other it is protected from corruption.

Let me offer an analogy from a very different kind of data control. I’ve spent a lot of time designing database interfaces for operational staff. The point of committing the huge overhead of resources that designing a user interface requires, is to ensure the integrity of the data held in the system. The user interface prevents access to some bits of data, controls what kind of new data can be added, makes sure that it’s complete, prevents people randomly deleting stuff by mistake, amongst other similar control activities. The DNA in our genes is a bit like the data in a database. The organism needs to be able to access the data, but it also needs to be able to rely on it. Inaccurate data in a database may give rise to misleading results; in genetics it tends to give rise to disease. The species barrier is a bit like the user interface. Some bits of data never come into contact with each other, because, as I flippantly pointed out earlier, elephant sperm cannot get access to the germ cells of a wheat plant. There is no genetic free-for-all. A database that consists of “naked” data in a spreadsheet is not going to stay fit for purpose for long. Anybody can open a spreadsheet and start altering or deleting data. Very soon, the data will be useless. This is my fundamental concern about GM. It takes the genetic data of the biosphere and starts mucking around with it just like a rogue user let loose on naked data without controls or validations. And it does so within an arrogant assumption that we know all the consequences of what we are doing, and that we’ll be able to stuff the genie back in the bottle if it all goes horribly wrong. It might be worth taking that kind of risk if we had no other options, but we do have other options. They just don’t appear to offer the same opportunities for making profit.

And so I believe I have sound reasons for resisting GM in the open environment (and whilst many do not apply in the setting of a secure laboratory, even then we do know that “secure” is easier to say than to achieve) and they are not based on ignorance, or fear of technology, or romantic hankering after bygone ages, or any other of the things that I and other GM sceptics are accused of. On the contrary, it’s because I do know something about biology and genetics that I’m not going to swallow the GM companies’ self-serving, patronising attempts to sooth me.

* Some ideas in this blog post have appeared here before: I apologise if it all seems a bit familiar!

Apparently my job is killing me. And not in a good way.

I can’t vouch for the accuracy of this infographic, but it’s rather striking. Enough to make you feel the need for a sit-down in fact. Hang on…

But at least I’m slouching at the required angle, so I suppose there’s hope for me. And bollocks to all those teachers who told me I was ruining my back by not sitting bolt upright. Just one of the many lies I suffered at their hands. Whilst I’m on, I might also mention that despite a lifelong tendency to sit on radiators when it’s cold, I still have haven’t developed haemorrhoids. Glad to have cleared that one up.

Sitting is Killing You
Via: Medical Billing And Coding

Goodbye, bitter-sweet month of June

Apart from the crassly obvious fact that the various branches of my family have evidently seen October as a particularly conducive month for shagging, it’s hard to know what to read into the fact that for me June is littered with significant birthdays. At the beginning of the month, my mum was 91. At the end of it, my son was 20. And in the middle my dad would have been 96. He isn’t, of course, as death has intervened. I should also note that this October shagging malarkey has jumped a generation, since my own parents clearly preferred a get-it-over-with-earlier-in-the-year approach to procreation given that my and my brothers’ birthdays occur long before the first cuckoo has troubled the readers of the Daily Telegraph.

But all this birthday-ing in June always leaves me scattered to the four winds emotionally speaking. Of course, birthdays are generally a matter for celebration, and for raised spirits. But they are also times for nostalgia, perhaps even sadness. Sadness that my mum potters along in a haze of confusion that I am powerless to dispel. Sadness too that my relationship with my son is more complex and more distant than I would wish. Sadness, of course, that my dad’s birthdays are now virtual rather than real.

My brother – the one who writes these and who engaged me in Alzheimer’s discourse – retrieved a recording of my dad singing an aria from Haydn’s Stabat Mater and I listened to it on my dad’s birthday last month. To be honest, between dad’s lack of preparation and the limitations of an old reel-to-reel tape recorder, with non-directional microphone, Haydn was probably twirling in his own grave. Not so much a rendition as a massacre, which is why I’ve spared you the 1967 home version and linked to a proper performance. But although my dad was no professional singer he had a sweet-toned tenor voice, and the key thing in that home recording is that it is his voice. It took me back, and set me thinking.

My dad died in 1994 after a three-week spell in hospital suffering from congestive heart failure. As ways to die go, I suspect this isn’t the worst; a relatively gentle downhill slope, mercifully alert and not doped to the eyeballs with morphine as might be the case with a death from cancer. As a family we’re about as demonstrative as so many blocks of wood, with all emotional transactions laced with so much irony and camouflaging humour that they are almost undetectable. Thus it surprised me in a way that I was so anxious to be with my dad when he finally died. I was on my way back to London from my last visit when I had the overwhelming desire to return to the hospital, and had my partner drop me off in Newark so that I could get the train north again.

I slept in the ward, and awoke early to go back to my dad’s bedside. He was weak, but alert. For the first time in 30 years I took his hand in mine. He turned to look me straight in the eye. A quizzical look, surprised at the sudden touch, and an equally sudden realisation that this could only mean that the game was up. The words “Love you , dad” came unbidden to my stumbling lips, but they never emerged. They were swept aside by the calls of “Nurse!”, driven by my urgent need to know if, for the first time in my life, I was holding a dead man’s hand.

So my dad never heard me tell him that I loved him. And I don’t think he ever told me explicitly that he loved me. History may sadly be going to repeat itself. But at least there’s this, this blogging business, this public stage for private exchanges. Perhaps, when I too go to my grave not having said the things I should have said, and possibly not having heard the things I want so badly to hear, my son will read this stuff and know what his 20-year old self maybe doesn’t know. That I love him more than he can ever imagine, and so much more than I’ve ever been able to express. And who knows I might, even now, pluck up the courage to tell him to his face. I hope so.