Baselines

I think I’ve mentioned here before that my son was diagnosed with Autism Spectrum Disorder some time ago, back when he was three. I’ve always been ambivalent about the diagnosis; his mother had him evaluated roughly six months after we split up, when she was probably at her worst point post-break-up, and her own depression was, to say the least, making it difficult for her as a mother. Our son was weathering that, and weathering the loss of my regular presence – I was getting back to Seattle for a week a month, roughly, while figuring out what to do about my London existence and experience what I can only describe as a tectonic reflection as I experienced life after the marriage – and his emotional state was fraught to say the least. I’m not sure the diagnosis was correct at all; even the write up made it sound like the evaluator was talking to just a confused, depressed, and inarticulate three-year old trying to right himself while his parents both were spinning out of orbit.

As for the diagnosis, the result of it has been a two-edged sword: on the plus side, it has bought our son access to emotional therapists, social skills specialists, and extra attention from his public school systems. It’s given what was always a pretty bright, intellectually sparked kid the extra attention that any parent would love to have for their son, which is a good thing. On the downside, it’s pigeon-holed him as The Autistic Kid, and since his mom has always been prone to hypochondria and the exaggerated emotional responses involved, he’s The Autistic Kid with the Paranoid Mom and Overly Relaxed Dad, which I do think is a kind of early-mid-21st century archetype. Recently, the Paranoid Mom and the Overly Relaxed Dad have agreed that the schools are getting a bit lazy about his social skills therapies, however. It comes across through a bit more obvious cut-and-pasting in the quarterly check-in reporting, and increasingly bland and non-descriptive parent-teacher interview commentary. In fact, the school seems more focused on how bored the boy is as opposed to his social skills, and his social “issues” are now more related to his trying out the inappropriate words he learns from his friends on the bus than on his ability to engage with the class. We’ll reevaluate him in general here soon, once pandemic logistical challenges allow for it.

In any event, the more I see him with other kids – and as a reasonably involved single father, I spend a lot of time overseeing him with his friends, both virtually and in-person – I see elements of the “spectrum” diagnosis. He misses social cues that his friends don’t; he focuses in a way which is almost spooky sometimes. But if I defocus on my child for a moment, always a trick as a parent, I can assign some kind of “syndrome” or “disorder” on pretty much any child I see. There’s the ADHD kid, who can’t sit for more than three minutes at a time while doing virtual class or playing Minecraft. There’s the kid who is far more on the spectrum than my son, whose eyes cannot focus close or far and often wanders off without notice and often yelps when a loud sound or bright light suddenly sparks off. There’s the kid who cycles from happy to sad in the course of 15 minutes depending on how much attention he’s getting from the adult in the room, whose parents are going through a nasty courtroom divorce and often is dropped off with an angry word, a slammed car door, and a quick spin out of my driveway.

He has a friend in Seattle who might be close to “normal”, though, who I often think of when I deal with all the other kids. He’s one of five siblings of an upper middle class couple – she’s “stay at home” but volunteers for most of the parent-teacher committees, he’s a salesman of some sort of high priced capital goods, both vaguely overeducated and very, very happily and successful materialists – and he’s smart, happy, well-adjusted, you name it. His siblings vary between annoying and cute, but he’s right down the middle, a 280 yard drive off the first tee (he’s the oldest), the baseline.

I was thinking about my son, and about this friend of his in Seattle, when I read an essay by a woman in the UK who describes herself as a “poet, memoirist, and novelist”, which I think actually would be a decent enough description of any of the authors on this site (well, maybe not “poet” for me, but the rest works). The essay describes her thinking as she faces a question on what is presumably a government form, “Do you consider yourself to be a disabled person?” You can probably guess the form of the essay: there are three choices on offer, yes, no, and “prefer not to say”, and she moves variously among the choices and finally settles on not filling in anything but crossing out the “no” and “prefer not to say” options. This is supposed to be quite original and clever, and of course we’re supposed to root for her in her struggle to define her status in the spectrum of disability.

Her disability, by the way, is that at the age of 42, she was diagnosed as being on the autism spectrum disorder. So the essay struck me particularly as the father of a boy who was diagnosed for the same thing, only he was diagnosed at age 3. Moreover, my sense is that the author of the essay probably is about as “autistic” as my son is – which is to say, so highly functioning that it’s difficult to distinguish the “disorder” as a disorder per se from just the normal variance in from perfection that the vast majority of us experience as a function of being alive. Very few of us are like my son’s friend in Seattle who is preternaturally well-adjusted. Most of us – the vast majority of us, regardless of class or race or gender – are on some level simply a bit off.

The essayist’s point, seemingly, was something about what constitutes disability, at least a mental or intellectual disability, and what disability means in the modern world, but I feel like she completely missed the point because she bought into the social idea of disability and was trying to confront that without thinking about the concept. Maybe that was because she was annoyed by a government form, which is fine: we’ve all been there at some point or another. At my best, though, when confronted with an idiotic question on a form from my employer or government, I try to take a deep breath and think “why are they asking this”. Someone, at some point, thought this was a valid question, and enough people agreed with that person – which certainly had to move through a set of committees, an audit process, perhaps a procedural vote, definitely at least three sets of approvals – so as to update Form 1022.31 Version 12/1997 to Form 1022.31 Version 04/2008, now including the question regarding disability. The author didn’t think about that at all; she simply was bothered by the implications and set about trying to bend it to her frustration, to her will, to her own diagnosed-at-age-42-and-now-definitely-kind-of-enthusiastic-about-the-diagnosis-as-a-means-of-considering-herself-as-an-other-despite-her-otherwise-normal-well-educated-white-middle-class-person-poet-memoirist-essayist-existence desire.

My guess, though, is that the question came from an honest bureaucrat thinking about how people want to be considered by the bureaucracy, and I’m impressed by the question. I don’t want my son to be considered autistic, or disabled, by his school system or his government; I want him to be considered “on the range of normal”. I even like the fact that the option of “prefer not to respond” is given as a response (like any such response, the non-response is of course a response). The bureaucracy is asking whether you want accomodation, or special consideration via some separate adjudication or service mechanism. If you don’t, just say “no”. And if you want to defer – keep your options open depending on what the outcome of the form’s processing is – just say “prefer not to say”. Brilliant.

What the essay brought to mind, actually, was the normal kid in Seattle. Obviously he would mark “no” to that question, right? Or would he? Maybe he’d prefer not to say. After all, if you’re that ridiculously well-adjusted, you’re definitely not “disabled”, but are you “normal”? Do you need some bureaucratic adjustment? If you’re a truly moral person, pragmatic and existentially aware of your place in the universe and society and thus aware of your privilege, shouldn’t you actually mark “prefer not to say”? Because you actually should have differential handling, akin to what someone in a wheelchair or a blind person needs, but just skewed in the other direction. Making your existence morally equivalent should involve the bureaucracy making your life just a bit harder, because you have the physical, emotional, and intellectual tools to adjust and deal with it. Our author friend, struggling with the ability to understand the social vectors which even make such a question possible, struggles to fill out the form without an existential crisis; if you can handle it, then, shouldn’t you have some other part of the bureaucracy give you some kind of existential struggle to even things out?

Or alternatively, do we create an accommodation for the perfectly adjusted boy by giving him additional classwork in order to understand the rest of us, to understand the diversity of ways in which other kids are not well-adjusted and how he can employ his higher level of empathy to relate to them in ways which will resonate? My supposedly autistic son is getting a half hour a week of social skills therapy; the autistic author of the essay is getting additional resources and support to take graduate studies; why shouldn’t the “normal” kid get additional resources to learn how to exist in a universe where nearly everyone is not, in fact, well-adjusted, upper-middle class, and white?

The problem, indeed, is that we – and I do mean all of us here – default to a baseline of normal which is and never has been particularly common. Normal is more than a simple or general social convention: normalcy is a convention established by learned, written society, and since even today, the ability to write articulately and get published is a function of an extraordinarily unusual set of circumstances, that “normal” is an absurdity. My son, and the essayist above, are considered “abnormal” or “disabled” only because they have had access to screening resources set up by a rich and professionally ordered society, with norms established by articulate and capable bureaucrats and sociologists and cultural anthropologists.

Mind you, I think there is a valid distinction between “not normal” and “disabled”. I’m going to posit that the bureaucrat who wrote the question was thinking something along the lines of “a disability is something that would impair your ability to exist in physical and social space to the extent that only with material adjustments in physical or social space, or a material intervention on your behalf, will allow you to be both safe and have the means to compete for your desires”. He or she wasn’t thinking of “not normal”, although the essayist definitely had conflated the two ideas in her mind when going through the quandary of how to answer the bureaucrat’s question. Is she “disabled” – is my son “disabled” – because of a diagnosis of autism spectrum disorder as a functional person? No, she is not, and my son is not. Are both of them Normal? Well….

This is what really struck me in both this article and a much better written article about the role of perspective in ethnography and cultural anthropology. Scientists of humanity – whether “hard” scientists like biologists or “soft” scientists like psychologists – all implicitly analyse our state based on some given baseline of “normality” – that which is normal, a state of homeostasis that theoretically we “all” share. But this is patently false. The homeostatic baseline of my normal functioning body and mind has literally nothing in common with the homeostatic baseline of the normal functioning body and mind of, say, a physically perfect specimen such as Tom Brady, noted professional American football player, or Justin Trudeau, prime minister of Canada, or that of the oral historian who lives up the road, or that of Matt Boutte in San Antonio. We’re all roughly of the same age, but each of our homeostatic conditions – all reasonably healthy, all reasonably sane – have very, very little in common. None of us are “disabled” but also none of us, arguably, are particularly good baselines for “normal”. But the human sciences presume to compare all of us to some sort of that baseline which presumes that there is a reasonably coherent homeostatic state that we should all compare ourselves to.

Now, each science has a different version of the baseline. Medicine seems to push their baseline towards the Adonis-like perfection of a Tom Brady – who eats a precisely proscribed number of calories per day, burns each of those calories in a precise fashion, all in pursuit of a hopefully-perfect athletic performance once a week for 19 or 20 weeks a year. Psychologists probably look to the baseline of a Justin Trudeau, delivering precisely and articulately worded press releases with the empathy and grace of someone not just out of central casting, but someone out of central casting with a halo and a moonbeam shining on their shadow. Oddly, the economists out there look to Matt and I as examples of the rational value-maximizers, even to the point that we weigh non-priced goods such as the ability to write and listen to poets in our basket of goods which are placed against the cost of acquisition. And the oral historian – raising her child and her dog – is also likely a baseline of a kind of grace-filled balance of social and private means of grace. But none of us, not one, is normal.

Taken each on its own terms, though, this sort of makes sense. Medicine and physiology were born out of the art of dealing with extremal cases: how do you save someone with a broken leg? Who has been shot? Who has a tuberculosis? Who is, fundamentally, disabled – who has lost the ability to function in physical and social space full stop, not just with or without accommodation, but just can’t function? For most of human history, disability was easy to define: are you blind? Well, then you’re disabled: in a world in which discerning prey in the forest, or the right kind of seed, or the right path to find the spring, requires sight, you’re disabled. If you have a broken leg, or your limbs are assembled such that you can’t walk, and again, you can’t reach the spring, or the field, or the prey, then you’re disabled. This is easy to define and – with apologies to the essayist of disability with regard to autism – quite clear.

In a world of limited physical means – say, that of the 19th century and most of the 20th century – disability becomes more constrained. You don’t need to plough a field or hunt prey for your food; you can use your mental capacities to generate social goods. But that’s a revolution in and of itself; it doesn’t introduce a new set of rights, it just introduces a new set of moral, well, not obligations, but moral pressures for existentially and pragmatically endowed peoples. This is really important: as humanity has increased its ability to do good, we also increase the personal pragmatic sense that we should do good for others. That moral “obligation” isn’t absolute: it comes as a learned sense of what we’d like to have others do unto us if those others lived in a similar state of physical and social abundance. It comes with it a personal obligation to understand how others might need to withhold that kindness if the abundance were to suddenly vanish – say, if the planet experienced some kind of an electromagnetic storm that destroyed all of our communications and energy infrastructure, or if a random pandemic killed lots of us suddenly and without explanation. Disability is tied deeply to the lived but also created environment of humanity. In a world with full abundance, disability is almost infinite – when compared to the fully-adjusted boy in Seattle with rich, well-adjusted, time-abundant parents who can shower him with everything he needs. Anyone who doesn’t meet that standard is “disabled” – indeed, even the boy may be “disabled” compared to Tom Brady, at least physically, and even Tom Brady may be “disabled” compared to my son’s friend on a psychological and social level.

Ability, in other words, is linked to the capacity of our constructed physical and social world to enable maximum potential. Disability is simply the counter to that almost boundless possibility of ability. The essayist is right in saying, therefore, that everyone is disabled – in crossing out the “no” and the “prefer not to say” – but she’s right in doing so on behalf of everyone, and therefore is pretty uninteresting. We live in a world – perhaps only temporarily, but still we live in it – of nearly boundless physical and social potential. Thus we are all able to check the “yes” box when asked do we consider ourselves disabled. That’s only because the baseline of “ability” approaches limit infinity in a world in which positive limits on resources – both in time and in space – appear to be nil.

Now we only appear to live in such a world; resources, as we know, are not actually unlimited, they only seem to be in our narrow context as individuals confronting a very large social and physical space. Globally, resources are limited – we can’t just burn all the carbon all the time – and socially they are as well – we can’t just make everyone the best in everything they do, rewarding everyone with endless social value and prestige all the time. There are only going to be so many “bests” in athletics, and only so many “tops” in medicine. And the “bests” in athletics are probably not going to be the “bests” in medicine, or the “best” in moral philosophy, or in art or in banking or what have you. Indeed, we can probably define a proper subset of “bests” in physical achievement or even in the more field-defined areas of health, but in the areas of social achievement, there will only ever be an expanding field of “bests” who are themselves only limited at being best. Everyone else will be, socially, “disabled” – not fully abled – in those social fields. And physically just the same – Tom Brady must be seen as a “disabled” soccer player. After all, he can barely move in the pocket, let alone outrun a middling Bundesliga fullback.

The normal, though, is unmeasurable for entirely different reasons. What is “normal” physical ability? Well, it’s a lot less today than it was three hundred years ago: a diminishing part of humanity actually grazes animals, hoes fields, hauls stuff, and thus builds physical stamina in the way that almost all of humanity did in days of yore. In modern societies, most people are mostly sedentary – they work at a desk, they operate machinery via control mechanisms, they write or create – and therefore the “norm” for physical strength, stamina, metabolism, you name it, is now quite different. Tom Brady is not normal – alas, I am, and even that is a stretch, because I haul wood and walk an animal and start fires and lift children in a way that is actually sort of abnormal these days. Mentally, “normal” effort is outpacing the change even in the physical world. If you read any early 19th century fiction – or better yet, the counter-Enlightenment philosophers – you’ll get an extraordinary sense of both learned and unlettered people as having almost no capacity to imagine in a self-reflective way, the way that by the time the 1920s rolled around – when Einstein and Wittgenstein and Camus and Sartre were starting to really kick into gear – was almost incomprehensible.

The other Essence of Water writers and I read William James’ On Pragmatism in October, and what struck us all was how almost banal many of his observations and assertions were. The idea that people should self-reflect on their propositions and compare them to their efficacy in the real world as a test of value, while still using traditional tools of logical induction and deduction, not privileging any rational tool over the others “just because”, struck all of us as so obvious as to almost question why it was worth mentioning. But really, it was revolutionary when he said it: compare that to almost every philosophical tradition around the world, which does say “thou shalt deduct, or induct, or accept without question the following” as a requirement of knowledge.

Normal, therefore, has been changing rapidly – and probably always has been, only the pace at which it has been changing has legitimately accelerated with the speed of information. What was obvious in the 15th century – accept that which is revealed via “scripture”, accept that which is revealed via transcendental thoughts of a Buddha or from the stars or from time immemorial – is now strange. Meanwhile, what is obvious today – use your mental faculties but always test what actually seems to be real against the world-as-lived, against your own sense of what you-would-have-done-to-you – would have been seen as blasphemy in earlier times. But our sciences – hard and soft – nevertheless ground themselves in this phantom cloak of what is “normal” during the time in which they evolve their thoughts.

I think this paradox – the narrowing notion of what “normal” is, measured on the one hand as against a baseline of physical or intellectual perfection, and on the other hand against a middling average that can never be precisely defined – is at the heart of the existential crisis of early mid 21st century society. We all consciously or unconsciously know we are not “normal” – we are all on the spectrum in a basic way, either too precocious, too well-adjusted, too awkward; too tall, short, fat, thin. But we also know we have potential to be great in a way which never bothered people in the past – we all can be “the best” at something, if only at backgammon or rinsing hair or designing corporate legal structures. But we’re confronted constantly with social sciences which require the existence of the “normal”, the “average”, the “baseline”, in order to justify their continued operation as sciences.

The non-human focused sciences struggle with this as well, but it’s not quite so personal. How long is a second? Well, currently we define it as the interval over which approximately 9.1 billion electron transitions occur from one ground state to another in the outer shell of a caesium atom. But science at its best knows this is a tautology: we’ve used a physical thing to baseline a human notion – in this case time – without really defining what “time” itself is. This makes calculation of lots of other things really convenient, but as any good quantum mechanic will tell you, it doesn’t actually answer the question. Somehow, though, in the human sciences, we willfully blind ourselves to this tautological problem. What is normal in human society? What is the ideal against which we measure ourselves? Both are the same, we effectively say, and don’t ask more questions.

I have little expectation that a further evaluation of my son will “solve” the question of “is he autistic” or not, because I know the question is false on its surface. The question I’m seeking to answer is, frankly, cynical: how will bureaucracies deal with his unique needs going forward? Will it be as an individual who as a “disability”, measured only against an undefined and meaningless benchmark, or will it be as a “normal” individual, defined only as a vacuum of disabilities and without regard to either his potential or his lack thereof? What frustrates me – both for him, for me, and for the essayist who rails against the choices given to her – is that no one, really, is trying to drop the facade entirely, and just face the individual – the human being – on its own terms. Yes, that takes more time – but surely we’re not trying to wrestle down prey and paw at the earth for berries and grain any longer. In an increasingly abundant world, we have the capacity to breathe, to look at one another in the face as individuals. We may have to be brave – both as a society to admit we cannot solve every disability, nor elevate every potential, and as individuals to admit that we will never realize every potential nor have all of our challenges eased. But that’s always been in the cards – we just now get to have fewer challenges outside of our capacity, and more potential within our grasp. We just have to drop a notion of normality to get there.

But in writing this, I acknowledge that I am deeply abnormal, both in failing to be toeing to the mean of a man of my age, race, class, education, and upbringing, and as one who is deeply disappointing to anyone seeking to demand that we realise our full potential.

But I keep trying to be better – but my baseline is simpler. I keep trying to be better than I was yesterday. And I’m open to criticism – tell me when I fail. I think that’s all we can do. Our baseline is yesterday, and our measuring stick is the world. Please tell me when I fail.