Tag Archives: autism

NEURODIVERSITY AND THE PARADOX OF FALLING LEAVES

oak-grove

Finsbury Park, London. It is November and the falling leaves are beautiful: red, yellow, and brown; sinking, swirling, crunching. Of course, it is uncontroversial to point out how beautiful the natural world can be at this time of year. We all agree on this, partly, perhaps, since the notion is so deeply ingrained in our culture.

I am more interested in how the beauty of the falling leaves might seem paradoxical, once we consider that their beauty stems from their death – something usually associated with suffering and tragedy. Modernity, after all, makes us fearful of death, our ageing and decaying, to an unprecedented degree. We habitually shy away from finitude: hiding it away in the hospices and slaughter houses, and stifling its signals through cosmetic and digital enhancement.

How, then, could the fresh corpses of a thousand leaves manifest as so effortlessly magnificent?

Because of this apparent paradox – call it the paradox of falling leaves – autumn always reminds me of the ancient Greek concept of a “beautiful death”. In the Homeric era, living well included dying well, which itself was associated with a process of swapping the finite (eschaton) for the infinite (telos). In this way, and in complete contrast to modern understandings, a good death was not just bearable: it was a thing of magnificence, to be celebrated rather than mourned.

I like this concept not just for its own sake, or because it helps dissolve the paradox, but also because it shows the boundless extent to which cultural norms and practices can affect how we react to natural and, indeed, inevitable aspects of human existence. The hope that arises from this is as follows: if it is possible to see even human death, or at least a good death, as beautiful, then is should similarly be possible to re-orientate ourselves towards freeing other natural aspects of human beauty through a likewise more positive lens.

By partial analogy, consider how modern life is similarly so fearful of neurological difference. Currently, we pathologise and medicliase the neurodivergent; we associate neurodivergencies with suffering and tragedy; parents mourn when their children are identified as such; we try to coerce and train them into normality from the moment of identification; and we segregate them into sub-standard schools.

Whilst this may seem ordinary and intuitive to us, by contrast, many traditional cultures managed to see profound (albeit in some ways problematic) beauty in the neurodiverse. In medieval Russia, for example, those bodies now labelled autistic were often seen as “holy fools“. Far from being an insult, the term “fool” (durachok) in this context indicated a blessed, principled, and innocent detachment, which was appreciated by Russian society and celebrated by the likes of Dostoyevsky. Similarly, in traditional prehistoric cultures, those bodies we pathologise as “schizophrenic” were revered for their shamanic insight. Indeed, even in some contemporary non-Western societies, they are still taken to be seers who can, for example, draw wisdom from dead relatives, and so are considered valuable and important members of the community.

In noting this I am not calling for a return to these worldviews: they are long gone, or going. And let us also beware of how such representations fetishize neurodivergence. But I do think we can take the insight that neurological difference, more than just being (usually begrudgingly) accepted and accommodated, could be again seen as beautiful.

I am reminded here of one of the gentler passages from the 19th Century German philosopher Friedrich Nietzsche, who urged us to learn to see beauty in human difference in a similar way to how we habitually see beauty in nature. To quote Nietzsche himself:

 “In the way we go around in nature with cunning and glee in order to discover and, as it were, to catch in the act the beauty that is particular to all things; in the way we, be it in sunshine, under stormy sky, in the palest twilight, make the attempt to see how every piece of coastline with its cliffs, inlets, olive trees, and pines achieves its perfection and mastery: so too ought we to go around among people, as their discoverers and scouts […] so that their own particular beauty can reveal itself”

In other words, just as we learn to comport ourselves towards different natural landscapes – or, indeed, falling leaves – in order that their beauty emerges for us, so too should we learn to comport ourselves to natural human difference in a similar manner.

I think this consideration is particularly pertinent when it comes to the neurodiverse. Whether we come to see beauty in the physical appearance of the model with Down’s syndrome, to relish the writings of the autistic poet, or take joy in the interactive performance of the dyspraxic actor – our capacity to see beauty in such difference will come in part from how we comport ourselves towards the unfamiliar, the different, and the seemingly disordered.

Much more importantly, this will also be the case when it comes to our encounters with those we consider to have multiple and more profound learning disabilities. Just as with anything else natural, ‘beauty’, Nietzsche goes on, ‘for one person unfolds in sunshine, for another in the storm, and for a third only halfway into the night when the sky is pouring rain’. That is to say, just as how a particular tree, leaf, lake, or mountain can manifest as beautiful in some light or another so too can each different person’s beauty manifest in light of the angle best suited to them, even if it is hard to notice at first glance.

To make this a shared habit, perhaps especially when it comes to our encounters with the more profoundly disabled, could benefit us all. Just as we, as a culture, can see beauty in each different dead leaf – not to mention how they all appear together: for they are far more beautiful in their shared diversity than alone – so too might we one day learn to comport ourselves towards the different modes of being, forms of life, and ways of relating, that constitute the wonderful neurodiversity of the natural human world. And if at some point this becomes a deeply ingrained habit, then we will thereby have made the world more beautiful in the process.

Resisting the New Down’s Syndrome Eugenics

 

phrenology

‘Freedom’, wrote the Marxist philosopher Rosa Luxemburg, ‘is always the freedom of the one who thinks differently.’ In her view, being able to think outside the usual norms of society is utterly vital. Not just for its own sake, but also for ‘all that is instructive, wholesome, and purifying in political freedom’.

Although she died before the third Reich swept to power – she was killed by German government-sponsored paramilitaries in 1919 – a similar sentiment was later echoed by Dr Hans Asperger, who, at considerable risk to himself, argued in 1938 to a room full of Nazi medical officials that ‘Not everything that falls out of line, and thus is “abnormal,” has to be deemed “inferior”’. In fact, Asperger suggested, many differently-minded people could think creatively due to their abnormality. Moreover, he posited, the kind of creative freedom that emerged from this meant that they could, despite their apparent limitations, be deemed useful members of society due to their ability to produce ‘original ideas’.

The reason such positives were so important for Asperger to stress was that, at the time he gave his speech, it was routine for ‘abnormal’ children to be characterised as mere ‘useless eaters’ who were nothing more than a ‘burden’ on the Third Reich. Due to the eugenicist ideology that pervaded Nazi discourse, these ‘useless eaters’ were systematically institutionalised, stripped of human dignity, and, finally, exterminated on an industrial scale. Given this hellish context, Asperger’s notion that at least some of the differently-minded could in fact be useful members of society allowed him to save some unknowable number of children from being horrifically killed.

Today, it might seem, we are of course a long way from the social-Darwinist horrors of Nazi Germany. After all, we live in liberal democracies, where all citizens are, theoretically at least, supposed to be afforded equal rights. Moreover, much funding goes into ‘helping’ the differently-minded, and there are thriving industries designed to aid or spread ‘awareness’ regarding all the currently identified neurodiverse conditions.

Nonetheless, this rosy picture has recently been challenged by Sally Phillips’ provocative documentary on Down’s syndrome, a genetic condition often portrayed as a tragic divergence from proper human functioning. As Phillips, who has a son with Down’s syndrome, points out, despite it being the case that people with Down’s can, with the right environment, live good, flourishing lives, it is now the case that up to 100% of foetuses with the condition are aborted in some European countries. Moreover, although Phillips does not mention it, there are recent cases in which Down’s children have been systematically killed by doctors, who somewhat bizarrely couch it in terms of ‘after-birth abortion’ rather than murder.

In line with the current abortion of those with Down’s syndrome, much research in regards to other neurodiverse conditions such as autism and dyslexia is also geared precisely towards finding genetic markers. And, although this is not yet fully feasible, a large part of the driving force behind this is the hope that more neurodiverse foetuses can be aborted, more differences can be eradicated – with part of the outcome being that humanity becomes ever more singular, homogenous, and fashioned in line with contemporary norms.

For those of us who value neurological difference and diversity, this seems scarily similar to the Nazi eugenics programme that sought to eradicate the differently-minded almost a century ago. Of course, there are important differences: current practices are, clearly, far less brutal. And most of those involved have, I think, the very best of intentions. But the underlying ideology has striking similarities: one doctor Phillips interviews, in an echo of the notion that they are ‘useless eaters’ characterised those with Down’s syndrome not as persons, but rather as a mere ‘burden that lasts for a long time’. Moreover, the final outcome is the same: the eradication of the differently-minded from the human race.

Many viewers, rightly, found such language outrageous. Nonetheless, writers in papers such as the Guardian and New Statesman have accused Phillips’ anti-eugenics position of being both classist and against women’s rights. On the one hand, they note, Phillips is a wealthy, middle-class woman who can afford to provide for all her son’s needs. And so, they argue, it is easy for her to preach about how easy it is to bring up a disabled son. By contrast, they note, a poor, working-class single mother would have a much harder time. Given this, Phillips worries are rejected, with the implication being that there is nothing wrong with the systematic eradication of neurological difference.

On the other hand, Phillips’ critics have also, perhaps more worryingly, accused her of undermining the rights of women to have an abortion as and when they see fit. The idea behind this worry is that women are merely given the opportunity for prenatal screening, coupled with impartial information, by organisations such as the NHS, and that if they then decide to abort based on this information, then they have chosen rightly. Any attempt to question such practices is seen as being at least covertly pro-life; and much has been made of the fact that Phillips, although her arguments are entirely secular, also happens to be a committed Christian.

Unfortunately, however, things are not this simple. In practice, the information given to women in this position systematically highlights all the possible problems associated with parenting a child with Down’s syndrome, but none of the positives. Similarly, other neurodiverse conditions are also routinely represented in this unduly negative way, being constructed via lists of core ‘deficits’ and associated ‘problems’, rather than in a more balanced manner. This systematic prejudice in terms of representation, under the guise of being impartial, already pushes potential parents towards devaluing and fearing neurodiverse life – and so it is no wonder that aborting neurodiverse foetuses comes to seem, as eugenicist Richard Dawkins recently put it, not just acceptable but ‘very civilised’.

Although this Dawinian line of reasoning might make intuitive sense to many people, when it comes to neurodiverse conditions, a deeper problem is that the science itself on which such representations are based is often hugely biased. Almost without exception, researchers tend to drive their experiments and interpret their data in light of what neurodiversity activist Nick Walker has dubbed the ‘pathology paradigm’. But, far from being scientifically established, the pathology paradigm is, according to Walker, a fundamental set of unsupported normative assumptions regarding what should count as ‘normal’ for human beings – and it drives research and data in such a way that constructs any deviation from this ideological norm as inherently pathological.

Take the case of autism, for example. As one leading researcher interested in the possibility of implicit bias pervading autism research found, characteristics that would be described as ‘strengths’ in anyone else are routinely represented as mere ‘compensations’ in autistic persons, whilst any differences noted in autistic brain wiring were automatically deemed deficient – with the alternative possibility that they were merely different not even considered. In other words, scientists representing autism tend to interpret their data via a lens that already presupposes it is inherently pathological, which in turn leads the results of the studies to echo this underlying presupposition.

Perhaps the most destructive aspect of the knowledge-production regarding neurodiverse problems is that it routinely gives the impression that such issues are associated with these conditions indicate some inherent and natural disposition towards these issues –rather than the problems stemming, at least in part, from how society is structured in a profoundly ableist manner. For example, statistics indicating that many people with some label or another tend to have high unemployment rates gives the impression that they are inherently unable to work, rather than it being the case, say, that workplaces and interview processes routinely discriminate against minority ways of neurological functioning.

In fact, then, the real problem Phillips highlights with current eugenic practice is not with the women who choose to abort. Phillips herself is explicitly pro-choice, as she should be. Rather, the worry is this: currently, people are subtly (and sometimes, not so subtly) pushed, throughout their lives, into believing that the all of neurologically different are inherently ‘disordered’, ‘lacking’, and ‘deficient’ to the point of being unworthy of life. This ideological manipulation actually restricts choice – making the possibility of bringing up neurodiverse children unthinkable – all the while giving the illusion that individual autonomy is greater than it once was.

The issue, then, is more in line with the equally problematic sex-selection in India and China, where female foetuses are, despite laws forbidding this, routinely aborted due to patriarchal norms and social structures. Just as we can criticise these patriarchal norms and social structures without being pro-life, so too can we remain pro-choice whilst criticising hegemonic social-Darwinist ideology and the pathology paradigm it is bound up with. Thus, far from being incompatible with being pro-choice, Phillips’ position, which is based on challenging the forces that restrict choice (i.e. which make the abortion of difference seem necessary), complements it, by challenging unjust social structures and opening up new existential possibilities for mothers-to-be.

As to the deeper intersection between feminist and neurodiverse commitments, it is also worth stressing how our conceptions of neurological differences are themselves tied up with dominant gender norms at any given time. Similarly, it is not hard to see how the physical characteristics associated with Down’s syndrome fall outside what is currently considered aesthetically desirable for either males or females. In each case, those who fall outside currently dominant gender norms, often bound up with wider economic ideology, become pathologised as disordered and in turn targeted for extermination – not, perhaps, because of anything inherent to the conditions, but rather because gender norms lead to those characteristics associated with the conditions being at least temporarily devalued.

A similar point can be made in regards to class struggles. Very significantly, for many neurodiverse persons, their class gravely effects how society responds to their differences. The working-class girl with psychotic tendencies may be more likely to be pathologised as being on the schizophrenic spectrum, and end up as a psychiatric inpatient; whilst the middle-class girl with similar tendencies may be more likely to be branded a disorganised creative, and helped towards becoming a playwright or poet. Similarly too, the middle-class “eccentric” male, fetishized as a genius, may have been deemed to merely have a “mild” autistic “disorder” if they were from a less affluent background. Consider director Tim Burton, who identifies with the label “Asperger’s syndrome”: whilst he can clearly flourish as a celebrated, creative, middle-class eccentric, those with similar eccentricities from a more working-class background are routinely socially excluded and in turn pathologised as being inherently sick.

Rather than criticising Phillips for failing to mention the utterly obvious fact that it is a lot harder to bring up a disabled child if you are a working-class single mother – and inferring that this means we should silence any attempt to challenge eugenicist ideology – we could alternatively consider how class and neurodiverse interests also overlap. That is, we might think that combating class-oppression positively includes a commitment to better public services for neurodiverse children, so that the existential possibility of bringing up neurodiverse children is more open to those who are less affluent, and not just the rich. Indeed, it seems to me that being committed to the emancipation of the working-class makes opening up this choice vital, since it is precisely due to oppressive classist and ableist ideology and social structures that the of bringing up disabled children is currently reserved for the very few.

In contrast to the claims of Phillips’ critics, then, it seem to me that the commitments of the differently-minded in the neurological sense, and the differently-minded in the political sense, overlap. If this is the case, then political freedom, as Rosa Luxembourg indicated, is indeed, I think, bound up with the freedom of the differently-minded – just as freedom of the differently minded is likewise bound up with the freedom of other oppressed minorities globally. The upshot is that the anti-eugenicist neurodiversity movement and other emancipatory movements actually intersect – and to overlook or deny this, from any angle, hurts everyone.