Capacity to Grieve

Building on my own self-reflection upon what grief means to me as an autistic individual, I explore my personal thoughts around the history of academic and clinical understandings of experiences of grief in neurodiverse populations and how it was considered in terms of a certain capacity to grieve based off of neurotypical assumptions as to how one should grieve.


One of the most troubling areas I have found personally in the world of categorical assumptions has been in how one ought to be, act, and react in loss. I have been rather unfortunate in terms of knowing so much loss in so few years of life, and this is another area where I continually encounter neuronormative assumptions of how people should be, because in all my loss, I still have not learnt how to perform a neurotypical grief. And how could I? How could I bring myself to force another way of being in times when the self I am collapses in the loss of the other’s gravity and motion? In grief I become too much or too little and even the latter has come to need significant intervention as all my action, all my motion, seems to freeze with the absence of the other, as I simply shutdown. My motion, so dispersed in the world, becomes lost in the loss of the other, and it stops with them.  

When someone dies, when profound grief strikes, time seems to evaporate, leaving one in this motionless moment outside of time altogether. It is as if time has carved a pocket for the grief stricken outside of this reality, in another space in which the flotsam and jetsam of the tragedy surface and fall with all their meaning and impact, but time, that unkind friend, protects us from their motion. It is as if entering the eye of a storm for that one moment in loss before time once more decentres you in the gravity of its motion and the stillness of the grief collapses in on itself under the unbearable weight of the loss.

Grief really is an odd thing. It is a very social thing, both in losing the other and all the other others who seem to appear following the death and in how the other remains along your side in some shape or form even in their death through a continuing bond of sorts. It seems that every time a wave of grief hits, I re-emerge reshaped regardless of how long it has been since the other died; it is odd the amount of influence the gravity of these relationships still has to alter the course of our trajectory and pull on our motion even when their own material motion has stopped in death. So, upon resurfacing, each time the grief shifts a little further to an some unrecognisable weight I burden, like the form of Sisyphus’ boulder changing each time, unbeknownst to him, until he is just walking up the hill with a clear path ahead, but the weight is still there and it always will be, it is just the form has altered; just as loss produced emptiness, the grief this lends, which at one point seems like it is everything and everywhere, eventually settles into that empty form, at this point I may no longer recognise it as grief, I seldom do, but the weight is still there. It might be small in just that off feeling one gets as if something somewhere is wholly amiss or that unknown dread which certain months now bring. For example, there is a particular misplaced pain that hits at the beginning of November. Or perhaps this empty weight takes the form of a period of seemingly random low mood far past the event itself, but grief, when and where it collapses into that empty space, always seems to persist.

Grief may persist in such a way that it becomes indiscernible as grief itself, at least, in any way in which I know it, but it is still grief, nonetheless. In a simple figurative sense, as I find weather always helpful in describing how I feel: one could say that although the flood of grief will flow and evaporate, the clouds formed in that process will remain and they will follow always, but, just like any weather system, time will produce change.

One of the pieces of ableist rhetoric which has often been employed to discount non-neuronormative experiences of grief as improper and invalid experiences of grief is the term “capacity”, that, for example, autistic people lack the “capacity to grieve”. This notion is problematic in two parts: firstly, that it implies a binary nature to grief, where one is either capable or incapable of grief, and secondly, by that binary distinction, that there is a proper way to grieve. In terms of the binary nature being applied to grief here, by using terms centred on capacity, one starts saying that either one has the capacity to grieve, or one does not: in other words, you either grieve or you do not. This type of dichotomous opposition is not well placed in looking at grief as grief is not a mathematical process, it is more often than not devoid of logic, it is a messy non-linear process, and our capacity for grief, both as neurotypicals and neurodiverse people, can change not only over  protracted courses of acknowledging, processing, and integrating the grief, but day-to-day or even minute-to-minute; we may find ourselves held firmly under the dark clouds of grief’s weather systems in one instance, to only find ourselves devoid of any capacity to feel, process, or even acknowledge the loss in the next instance. By framing perceived capacity to grieve as a reason to discount other’s experiences of grief, researchers, clinicians, and those around autistic individuals are not only at a loss in their own humanity in terms of being open to other ways of experiencing the world and conceptualising social processes, but also forget their humanity too in terms of its fallibility, its own limited and restricted capacities which are forgotten in looking into a mirror of people dealing with the same things, just perceiving and reacting in different ways. Being the satellites orbiting around us, they often forget we are the same creatures on the same planet.

It is actually rather startling to see that, within academic and clinical understandings, it was not until fairly recently that we came to acknowledge that autistic people do in fact grieve, in the same way there is still misunderstanding over our capacity to experience friendship(s) and other social phenomena. We do indeed have this capacity to do so, to grieve, to understand and experience the depths and intricacies of social processes and relationships beyond the material in loss. That we can be left at a loss of our own in the loss of the other. That we are not completely soulless: we have the capacity to grieve, and we hurt, we ache, we cry, we don’t cry, we are shocked, we aren’t shocked, we are at a loss, we do not know how to cope, we cope, we try to navigate the unbearable and sometimes we find a way to bear it and sometimes we get lost in it. We are human just like you. We experience the same beauties and tragedies of life, we just might do it in a different way, but they are most certainly not lesser or absent. We have these neurodiverse social worlds and understandings which don’t always quite match up with neurotypical social processes, and it is okay that our conceptualisations and ways of engaging in the world are different. However, what is not okay is forcing us to change who we are where adaption between us is not possible. Neurodiversity is more than understanding, it is about reframing neurotypical social conceptions, reframing their inherent typicality, and encouraging a decentring of neurocultures and neurotypes. This ultimately fosters neurodiversity in the broadest of sense in which we are not obliged to try to meet a certain form of neuropalatability and may just be understood simply as ourselves.


Live Long & Prosper


Double Empathy Decontextualised

I give an example of miscommunication and misunderstanding at its worst to decontextualise and illustrate the precarity of double empathy problems and the potentiality for risk which lies in misunderstanding. I then give an overview of what double empathy entails and explore my frustrations of being misunderstood so often.

CW: this post discusses a traumatic area of medical history.


There is a specific horror in medical history, well, there are many specific horrors in medical history. Let me start that again…

There is a specific horror in recent medical history, in which a population which could not communicate, at least in any way in which we understood, underwent thousands of surgeries every year without any anaesthetic. It wasn’t until 1987 that these patients would be anaesthetised for surgeries in the U.S., and now, our current understanding is that this population actually feels pain significantly more sensitively than the rest of us and exposure to physical pain, like these unanaesthetised surgeries which were carried out by our inhumane medical perspectives which carried their way through the 1990s in some spaces of western medicine, can bring with it long-term negative psychological outcomes. This population, who were they? They were new-born babies. [1; 2]

But why have I just told you this horrific account of pain? What has been the point in discussing these most twisted and, quite frankly, evilly unempathetic practices of surgery, medicine, and healing, and a terrible and false misunderstanding which cannot be communicated away? Because it is, in many ways, illustrative of the story of how people try to treat, support, and engage autistic individuals. We are often left without anaesthetic and unable to communicate our pain in a way which is received with understanding, except, unfortunately, unlike Jeffery Lawson’s mother, Jill R. Lawson, who became a passionate advocate to change the practice of operating on babies without anaesthetic in the U.S. after her son had open heart surgery with only a muscle relaxant, our advocates, despite the best of intentions, are also often the one’s holding the figurative surgeon’s blade aloft. The road to hell is paved with the best of intentions and its directionality downward into the inferno is only made more efficient by misunderstandings and apathy in the face of even the slightest possibility that the other may be suffering. There are whole fields of those who would see themselves as our dearest allies, who ultimately do us the most harm and misunderstand the communication of pain in-between: I am thinking of the pains and torments of rewards and punishments in applied behavioural analysis, the overuse of physical restraint when de-escalation is possible if one took time to actually understand the problem in the first place, the unnecessary seclusion because it is easier to remove us than deal with us, and so many more situations where painful misunderstandings, otherings, and reproductions of ableism also take the form and guise of care.

With babies and pain, it was more than thinking they lacked the same capacity for pain, but the surgeons ignored and muted the most primal tools of communication because a baby was not seen as developed enough to be reacting in such a way to pain: merely spinal reflexes and, well, babies are meant to cry, aren’t they? And well, yes of course, babies are meant to cry and reflexes react, but ignorance to the possibility of pain in a caring profession is unforgivable: the twinge in one’s heart and soul that one ought to feel at the sight and sound of the other’s, of a baby’s, cry and movement away from an object that is a source of pain. These reflexes and reactions were, in effect, tools of social and emotional communication expressing the most agonising pain they were experiencing, but no one saw them for what they were. Rather, they were muted by means of muscle relaxants so the surgeons may finish their job and that was it. A message by an individual communicated in one way and profoundly misunderstood by the other, and the intention of the doctor being that of believing they are causing no pain when the baby receives the communication of the doctor in their work as nothing but pain: this is, in effect, a very loose, decontextualised, and illustrative example of a double empathy problem.

Double empathy is a term used in communication between autistic and non-autistic individuals, but I wanted to try to provide an introductory example that immediately allows you (if the you that you are is a you that hasn’t experienced such a problem) to see yourself in a situation of similar quality to a double empathy problem as there is universality to having been a baby. There is universality to the experience(s) or potential for pains and illnesses which one has which may or may not yet be diagnosed which one cannot fully explain to a doctor, just that it hurts. One may not know anything beyond a misplaced and generalised pain and cannot communicate anything beyond this and the doctor may try all sorts of things to help reduce your pain; they may offer you treatments and surgeries which cause infinitely more pain than they should which you cannot quite fully communicate as you carry on in an attempt to get better because that is what you are meant to do. You are meant to do these treatments to get better. It may not be quite as dramatic as the first example, but I want you to be able to relate, even if it is just imagining yourself at the dentist and they have pumped you full of lidocaine but you still somehow feel every little jab, drill, and jolt, but they have their hands in your mouth so you cannot speak and you are flinching and moving and your heart is pounding and you are trying to get them to stop by waving your hand but they just think you are nervous so make a joke about the nervous shake they do before the 18th green before continuing to drill into you. I really hate going to the dentist. My point is you think you are communicating pain here; they just see a little bit of anxiety. They continue thinking you are fine; you both go on in your own misunderstandings of one another. I just want you to understand situations where you may have experienced similar processes so you may better understand us and how we navigate the misunderstandings of cross-neurocultural translations.

Originally, the double empathy problem was clearly defined by the autistic autism researcher Damian Milton in his 2012 essay titled On the Ontological Status of Autism: the ‘double empathy problem’:

The ‘double empathy problem’: a disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld – perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’ for ‘non-autistic spectrum’ people and yet an everyday and often traumatic experience for ‘autistic people’.” [3]

Now, what Milton highlighted was truly ground-breaking for many allistics and a profound encapsulation of what many autistic individuals knew and had always known but never had the vocabulary to express: the double empathy problem. We would call it misunderstanding. We would call it being misunderstood. We would call it frustration. They would call it a deficit on our part. They would call it “come on, you need to make the effort”. They would call it a thing we don’t fully grasp. We would be silent. We would be bent in so many ways in your often subtle yet violent and well-intentioned efforts of neuroconformity; we would break, and you would then call it progress. They would call it our fault; we would know that is just easier for them to say. We would be left empty, bare, nothing, filled with what you want, and you would finally call us whole. They would finally see themselves in us whilst we felt our most distant: a nothingness presenting as someone, as something neuropalatable. They would call us a person with autism, as if it could be separated from our motion, from our core, from every single atom of our being. We would call ourselves autistic, knowing full well it is not some accessory but central to everything we are, embodied in our actions, thoughts, and communication. We are autistic and they see a neurotypical holding that autism, it is hardly surprising they do not understand us.

In my first blog post I wrote, an essay titled What Kind of Thing is an I, there is one paragraph in it which captures so many of my thoughts, my pains, and it holds this notion of a quiet and oddly gentle yet violent neuronormativity:

“The way I bend and mould and flap and fold to fit and the ways I never quite will, I am pulled in by others to be more of something when I am already enough. Queerly I shift through the world as ‘less than’ in so many spaces that will try to both loudly and quietly, peacefully and violently make me whole, when they cannot see I, that ever expansive pronoun, am already overflowing in both time and space.”

There is nothing quite so gut wrenchingly depleting as to be misunderstood as lesser. To be pushed down into both misunderstanding and lack of worth. To have all the commands and tools you have to express your ways of being and knowing and loving and growing, but it is not quite enough. When I speak, and I use that term for the broadest sense of my communication, I do so in staccato; I am understood only in the crest of my waves as they remain oblivious to the rise and confused or annoyed or frustrated or bitter or tired or pitying or saddened or angry at the fall. It is hard. Communicating is hard.


Live Long & Prosper


References

[1] Chamberlain, D. (1989). Babies Remember Pain. Pre- And Peri-Natal Psychology, 3(4), 297-310. Retrieved 2 September 2021, from http://www.cirp.org/library/psych/chamberlain/.

[2] Walco, G., Cassidy, R., & Schechter, N. (1994). Pain, Hurt, and Harm: The Ethics of Pain Control in Infants and Children. New England Journal of Medicine, 331(8), 541-544. https://doi.org/10.1056/nejm199408253310812

[3] Milton, D. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883-887. https://doi.org/10.1080/09687599.2012.710008

On Neurodiversity & Neuropalatability

I write on the categorical constructs or, as I term them, buckets, of neurodiversity, neurodivergence, and autism. I look at how we define these buckets through processes of self representation and the identity politics behind this which is centred on an appeal to neuronormativity. After exploring various aspects of neurodiversity’s situation within identity politics, I finish by coining the term neuropalatability to reflect the appeal to neuronormativity and the representations of normalcy within the neurodiversity movement (i.e. those who are often centred tend to be white, cisgender, speaking, very successful at masking, etc.) which ultimately further marginalise those who do not meet these (neuro)normative standards of being in and engaging with the world.


I spent a year of my undergraduate degree studying at the University of Toronto where I took a course on Indigenous Worlds, Worldviews and the Environment taught by the incredibly gentle and kind Professor Neera Singh. It was a truly wonderful class and one thing she spoke of with such beauty and passion was the idea of human becomings, that we are never really human beings because we never really are, we are always growing and changing and moving. This motion, this constant growth with the environment around you, lends to the idea of being human becomings instead of human beings, unbounded by any buckets (i.e. socially constructed categories) that may inhibit our unbounded possibilities for growth and change.

This concept of human becomings is not just useful for humans but for knowledge too, and I think there is a lot, in terms of how we frame our buckets of knowledge, which can be learnt from indigenous ways of knowing and worldviews. Tim Ingold and Terhi Kurttila note, in a study on how individuals perceive the environment whilst contrasting two distinct ways of knowing Indigenous Knowledge: as discourse of modernity or as lived, reproduced, and generated in the practices of locality, that Indigenous Knowledge is unique in the sense it cannot necessarily be quantified, that is to say that we “cannot formulate explicit principals” of what is traditional. There are no adequate buckets for that which is already boundless. One cannot categorise the living and growing knowledges and people engaged in their (re)production and continued (re)shaping of these knowledges.[1]

This stems from the context in which Indigenous Knowledges are usually situated, in a framework of modern western thought; if we are to generate a static understanding of Indigenous Knowledge, it can be regulated, and these regulations can prove fundamentally damaging to practicing these ways of knowing as they compete with the dynamic nature of Indigenous Knowledges. Thinking of any form of knowledge as static is inherently destructive as it does not facilitate growth or allow for change. So, why do we do this with people? Why do we allow for the gravity well of the bucket to hold on them, to preserve them in still life, as a diagnostic chart, as a set of buckets and for that to be all there is?

However, this idea of a static and traditional Indigenous Knowledge perpetuated by modern science is what lends to the notion that Indigenous Knowledges lack dynamism and cannot change, that indigenous practices can be regulated as an unchanging way of living. Indigenous Knowledges are rich in oral tradition and are hereditary, being passed down generationally. However, this knowledge is not just passed down, but also learned as if it were a craft, embodied in the way one engages with the world around them insofar as they come to know their surroundings as well as they know themselves. These knowledges can be preserved through the oral tradition, museum work, schooling, and research, however, for indigenous peoples their knowledges cannot necessarily be separated from actually putting them into practice, and the cataloguing of their knowledges in places like museums often promotes the colonial stereotype of the static nature of Indigenous Knowledges.

These very same mechanisms of power and categorisation which hold Indigenous Knowledges in some timeless space in which it is rendered to still life, also hold individuals in restrictive clinical categories of classification under a neuronormative medical framework of power. Disability studies scholar, Lennard J. Davis, highlights that understandings of positionality within medical spaces can often be seen in language and rhetoric. This is important to note when comparing competing claims, from what it means to have a clinical condition under a medical model to how that is then mobilised into models of self-representation, such as in the neurodiversity movement. Davis furthers this by exploring how language usage enforces and maintains social structures and normative practices of power:

“Language usage, which is as much a physical function as any other somatic activity, has become subject to an enforcement of normalcy, as have sexuality, gender, racial identity, national identity, and so on, As Canguilhem writes, ‘there is no difference between the birth of grammar… and the establishment of the metric system… It began with grammatical norms and ended with morphological norms of men and horses for national defense, passing through industrial and sanitary norms’.”[2]

Davis’ notion of normalcy and language as a concept which is both restricted by social structures and a restrictor of them, shows a cultural focus of the norm over the ideal, and in so doing, sets in place these fixed notions, these buckets, of the way one ought to be and should be over a more fluid backdrop of an unattainable ideal which validates deviation from the norm as it acknowledges this deviation as a common space. These concepts, framed around autistic social and healthcare issues, demonstrate rigidity and belief in universality of autistic healthcare and normative medicalized understandings of how one should be autistic due to restrictive clinical criteria, guidance, and language within medical spaces. This is furthered when Davis discusses the origins of the word normal within Romance Languages:

“As Canguilhem writes, ‘Between 1759 when the word normal appeared [in French], and 1834 when the word ‘normalized’ appeared, a normative class had won the power to identify … the function of social norms, whose content is determined, with the use that that class made of them.’ Democracy needs the illusion of equality, and equality needs the fiction of the equal or average citizen. So, with the creation of representative democracy comes the need for an ideology that will support and generate the aims of normalcy.”

Representation in this sense only serves to reenforce and reproduce normative categories of lesser. This idea that language, and thus narrative, are being used to produce social norms, facilitates a western medical voice, which speaks from an authoritative position of power and universality to define, pathologize, and bucket neurodiversity in terms of how it most frequently manifests in medical spaces. This is done without the need to acknowledge possibilities, realities, and transgressions to sets of criteria which are fixed for long periods at a time and are not reflective, and never will be, of the universal experience of the set condition defined or of a universal experience of neurodiversity as a whole.

In order to combat a medicalized bucketing of the body, health and medical geographers, Michael Dorn and Glenda Laws, highlight that it is important that the body is not just seen as a site for pathologizing and medicalizing, but rather is viewed more holistically as a unique and individual space.[3] They see the body as host to differing corporeal compositions, realities, and socio-cultural backgrounds and desires situated in a simultaneously unique and shared positionality within a social structure intent on pathologizing and/or categorizing deviations from normalcy.

Now, what is quite interesting is where the neurodiversity movement fits into all of this, as it is not quite removed from categorisation, and, as much as it pains me to say it, it shouldn’t be. I hate labels, but we also need them. I need my diagnoses for so many things beyond self-understanding and being understood, I need these categorical labels to live. If it weren’t for my ADHD diagnosis, I would still be self-harming, that was a big feature of my impulsivity, but being able to understand that and to manage my ADHD through more supports and medication, that may very well have saved my life. Granted I have a most complicated presentation of ADHD as I am also autistic, have very bad anxiety, I do not speak, and I have experiences of complex trauma, but without the diagnosis, without this particular bucket, I would not be writing this, and I really would not be okay, as being able to manage the ADHD helped many other aspects. However, as I said, the neurodiversity movement sits on a funny precipice in terms of categories.

I mean, how does one define such a term as neurodivergent? It is ultimately framed in binary opposition, which is to say that to be neurodivergent means to not be neurotypical. But then that queering of buckets is just creating this binary of neurotypicality and neurodivergence, which is just yet another set of categories. Yes, these are now objects of self-representation, but they are still limiting. Yet, if I were to seek to research neurodivergent people, who would I be researching? How do we define neurodivergent because one cannot really research something if they don’t know exactly which population they are focusing on? However, I feel that highlights both an issue and, ultimately, the importance of neurodiversity and neurodivergence as concepts, that they are not constrained by these restrictive categorical constructs. They do not belong to buckets.

I think the broader neurodiversity movement is ultimately more in fitting with the scope of a medico-social bridge in the sense that it takes a somewhat queer ontological status which starts with these clinical buckets and reproduces them in forms of self-representation and subjective ways of being and knowing and experiencing the world. I feel this kind of ontological bridge between clinical categorisations, such as neurodevelopmental disorders, and self-representations of neurodivergence which the concept of neurodiversity provides ultimately raises the importance for understanding the politics of self-representation behind the buckets being (re)produced and/or leveraged in order to express ways of being, knowing, and engaging with the world in a non-neuronormative fashion.

I see an interesting and contrasting parallel with the ways in which we leverage self-representation in the neurodiversity movement and neo-Marxist approaches to understanding identity politics, as they both frame a model where identity runs in parallel to another system: a medical model for the former and class politics for the latter. Neo-Marxist approaches to identity politics often see culture as separate from, although not impermeable to, the government, the economy, and corporation, rather than viewing culture as forming, limiting, and being (re)produced by these very institutions.[4] Sociologist, Mary Bernstein, notes in a review of the neo-Marxist literature, identity politics is often regarded as a separate political process running, “in contradistinction to class politics[5] much in a similar way that concepts of identity in neurodiversity are both held by, maintained, and restricted in a contrasting parallel to medical powers which (re)produce the rigid categorisation which is fundamentally decentred and queered by neurodiverse identity politics. This notion can be further seen in the art historian Roslyn Deutsche’s understanding of a neo-Marxist geography,[6] with approaches to and knowledges of social justice which ultimately reinforce an opposition between culture, in this case we have self-representations of neurodiversity, and society, where we have a more fixed and restrictive understanding based on set categorical buckets of diagnostic criteria. 

However, although there is reflection in the narrative between these understandings to identity politics in one instance, there is ultimately little joining of the two, as neo-Marxist approaches to identity politics regard the overall concept of identity politics as problematic. The problem for them comes as activists often take on identity labels as essentialist terms, that Born This Way narrative in the popular sphere, rather than socially constructed and socio-spatially contingent status categories (re)produced by both the actor and the very institutions that maintain the identity of lesser. The political scientist, Wendy Brown, contends that processes of marginalisation, injustice, victimhood, and their legacies (re)produce the framework for the political and cultural ecology of identity groups.[7] She argues that seeking equality centred on oppressed positivist ways of being will only, in turn, produce heightened socio-political regulation and control over the identity groups by the dominant group which marginalises them in the first place. So, charting out a framework of what it means to be neurodiverse under a framework of neuronormativity will only serve to reinforce that neuronormativity in the first place. Therefore, one needs to queer it, one needs to break off from neuronormative bucketing and policing of traits in that sense. Moreover, this is understood by sociologist, Todd Gitlin, as:

The recognition of a collective hurt, followed by the mistaking of group position for culture followed by the mistaking of a culture for a politics.[8]

However, the views which problematise an essentialist identity politics often presuppose that actors wilfully ignore or remain ignorant to the multitude of varying connections identity has to bodies of power, institutions of governance, and the political economy. And for the neurodiversity movement this simply is not true. From a philosophical perspective, acknowledging the social (re)productions of identity categories does not prevent actors from forming collectives around those identities: we see this all the time within queer communities, for example, with trans and non-binary individuals who acknowledge the social construction to gender. And there is a large body of scholarship, such as work from Taylor[9],  Young[10] , and Kymlicka[11], which centres the notion of group identity markers forming where there exists a legacy of particular collective injuries and oppression. However, this body of scholarship challenges the idea that these differentiating identity markers necessarily produce impermeable, essentialist groups. They also do not posit that protected categories afforded to certain groups which have a history of trauma should be granted to every group, such as antidemocratic groups or, in other more neo-Marxisty words, groups which cannot reach a common vision and, by that means, exclusionary groups.

Nevertheless, this conflicts with the legacies of certain identity groups gaining momentum for liberation by means of exclusionary practices and exclusive spaces as sites of collective healing, recollection, and resistance. These spaces where one can exclude and decentre the neuronormative visions, rules, bondages, and violence of a neurotypical society are key to not only the success of the neurodiversity movement, but also the wellbeing for the actors fronting the movement. We need non-neuronormative sites of sanctuary, spaces to heal and unmask insofar as to not only continue on this great press for change for the benefit of neurodiverse and neurodivergent individuals, but also for our safety too: spaces to escape the violence of a world that seeks to alter how we ought to be or confront our ways with ridicule and abuse.

Moreover, generally, neo-Marxist approaches to identity politics broadly omit instances where holding essentialist identity is a political tactic or tool of rhetoric rather than an understanding of the identity itself. For example, it is much easier to say, “I was born this way” than it is to list potential biological and social conditions which may have produced a characteristic which defines an identity group. I come to Robert Sapolsky here when he attempted to sum up what depression is and came out with this fantastic line:

It’s a biochemical disorder with a genetic component with early exposure experiences that make it so someone can’t appreciate sunsets.”[12]

This is not to say we are going to start saying, “I was born this way” when it comes to depression, nor is it to say we will say the opposite of autism, it is merely to represent the sheer complexity to even one component of one’s own self and one’s own identity. So, for many who recognise the fluidity to things like sexuality, gender, and sex, they still reproduce a fixity in their own narrative because it is simply easier to recall this than to express such fluidity because our language hasn’t quite caught up yet beyond queer and suffixing queer: genderqueer, neuroqueer, etc. Even non-binary, to claim you are outwith this binary construct, is often just viewed as a third option rather than the fluid and queer dynamic form of self-representation as refusal of categorisation it is meant to represent. In this sense, non-binary has come to develop a representation of fixity where there should be fluidity, that one is stable in a category outside of social construct of gender which, in reality, is just another social construct of gender: a dequeering of the queer.

Overall, neo-Marxist approaches here may critique identity politics for being too cultural, essentialist, and not challenging class structures which produce social injustices and inequalities. However, these approaches are problematised by their distinction of the political economy as separate from culture rather than seeing them as two interconnected processes which continue to (re)produce one another and, as a result, status-based categories which are contingent both on the culture and political economy in which they are constructed and reproduced.

So, what lens do we have to look at the neurodiversity movement?

We have to move to another bucket of political and philosophical thought to look at how we consider identity in the neurodiversity movement and from this we can come to the anarchist approaches to neurodiverse identity politics.

An anarchist approach to identity politics provides a platform from which individuals can resist against a set of hegemonic norms with their own queer and queered practices and ways of being. Anarchist approaches to identity politics centre on the idea of what academic turned publishing consultant, Laura Portwood-Stacer, calls, “authentic expressions”.[13] However, as Portwood-Stacer notes, authentic expressions enveloped in political identity can be divisive in nature and run the risk of overriding concern from the tangible pushes for real material change to the more individualised and surface level focuses within identity groups. Nevertheless, despite the individualist concern, compounding acts of resistance and purposeful deviation from hegemonic norms, individualistic identities, and, that which is interesting about anarchist identity politics, refusal and resistance as an identity onto a genuine push for socio-political change can produce coalitions and collectivise groups. Now, these groups may appear in the first instance to lack common meaning with preference for individual concern but may well in the second instance produce meaningful material socio-political change.

A prime example really comes in the notion of queer identity; queer identity as an example of anarchist identity is represented as a refusal, rejection, and defiance of the authority and validity of, “socially dominant sexualities on the basis that they are natural or intrinsically valuable[14] or even just socially permissible. It is this rejection, the refusal of governance over the intimate and the individual, which is emblematic of the very core of anarchist thought and echoes the classic individualist anarchism stance that:

If the individual has the right to govern [themselves], all external government is tyranny.”[15]

Sociologist, Jeff Ferrell, sees anarchist identity politics developing as a result of accumulated transgressions of an external government by individuals who lack spatial fixity, the drifters who already repeatedly transgress societal norms and thus start to look for alternatives to the system which constantly places their individual ways of being on its margins.[16] Does this sound similar to aspects of the neurodiversity movement? That we drift. That we already cannot help but consistently transgress social norms and now we are looking for alternatives to a neuronormative system which value our individual neurodiverse ways of being which have thus far been cast off to the margins.

Moreover, as noted by the geographer, Simon Springer, anarchists established a very dissimilar geographical vision from Marxists, that is the imagined geography of self-containment and self-sufficiency that displaces the requirement for a central governing system, a site which resists the need for external government and thus authority which one’s identity can transgress.[17] In the neurodiversity movement we can see this in the continued march for agency and autonomy from medical governance, however, there remains the individualist concern to rely upon that power for its positivist categorical understanding of neurodiversity, that in order to have this category to queer you allow it to be made and reproduced in the first place.

Anarchist approaches to identity politics, unlike neo-Marxist and poststructuralist approaches too, explicitly understand that adoption of an identity, be it that of essentialism or refusal, which somehow can be seen in some odd duality within both the context of neurodiversity and neurodivergence, can be done as a political strategy. For example, queer is often regarded just as much as a political identity, if not more so, than as a way of representing certain sexualities and gender identities. To be queer as refusal of identity construct is to be political, it is not about whether or not one engages in heterosexual practices but is rather a rejection of the socio-political pressure of compulsory heterosexuality.[18] Queer identity politics centred on refusal of fixity and labels of lesser is less about rejection of straightness and more concerned with opposing its cultural dominance.

Moreover, queer as a refusal of status categories not only opposes heteronormative politics but also that of homonormativity.[19] This concept of homonormativity is explored by professor of women’s and gender studies, Jasbir K. Puar, who ties queer identity politics with that of a national identity politics in which partial acceptance of the gay community is linked to those who fit within a certain national narrative which sees white gay men being tolerated in the U.S. context while the rest of the queer community is still thrust to the margins.[20] These same processes are true for the cute and young white autistic cisnormative boys and those who fit similar narrative of neurodiverse as palatable or neurodiverse but not like them, but this grand march of neurodiversity progress sadly leaves those most marginalised further disenfranchised from those in whom they could find the most similarity in experience(s). It is “nothing about us, without us”, unless you are us and forget this in any privilege and power you gain within the movement in the celebration of a very white, a very cisnormative, a very laterally ableist, dequeered, and homogeneous self-representation of neurodiversity.

This odd and contradictory homogeneous representation of neurodiversity is productive to whomever benefits from the privilege afforded by the narratives represented but pushes those who do not fit within those buckets further to the margins. It is ultimately restricting to those not privileged in a neuronormative hierarchy of self-representation built on the weight of white voices with lower support needs and cisnormative expressions of gender and sexuality which subjugate the voices of the other.

I would like to leverage the concept of homonormativity into the neurodiversity movement insofar as to understand the progresses we have made and those we have left and continue to leave behind in processes of, often racialised and lateral, ableism and reductive and revisionist understandings of ourselves. Those of us who gain the most from the progress of such social movements tied up to neuronormative societal frameworks of power are the ones who are the most palatable to that neuronormativity: it is the young, it is white people, it is those who do not have significant support needs, those who are conventionally attractive, and those who actively communicate verbally. It is those who can appear like one of them in a moment of masking and look good whilst doing it. There is this element of moving beyond masking where those who are palatable to neurotypical space may be themselves but only because in doing so they are not perceived as to be deviating significantly from a perceptual construct of neuronormativity: this is what I call neuropalatability. It is the representative normalcy both of and within the neurodiversity movement and this pursuit of neuropalatability over a general allowance of neuroqueerness and radically non-neuronormative ways of being which stagnates our movement and further pushes those within it to the margins. Ultimately, an appeal to neuropalatability prevents us from relinquishing the restrictive neuronormative buckets cast upon us in our quest to establish our own narratives of self-representation.


Live Long & Prosper


References

[1] Ingold, T. and Kurttila, T. (2000). Perceiving the Environment in Finnish Lapland. Body & Society, 6(3-4), 183-196. https://doi.org/10.1177/1357034X00006003010

[2] Davis, L. (2002). Bending Over Backwards. New York University Press.

[3] Dorn, M. and Laws, G. (1994). Social Theory, Body Politics, and Medical Geography: Extending Kearns’s Invitation. The Professional Geographer, 46(1), 106-110. https://doi.org/10.1111/j.0033-0124.1994.00106.x

[4] Taylor, C. (1992). Sources of the Self: the making of modern identity. Harvard University Press.

[5] Bernstein, M. (2005). Identity Politics. Annual Review of Sociology31(1), 47-74. https://doi.org/10.1146/annurev.soc.29.010202.100054

[6] Deutsche, R. (1995). Surprising Geography. Annals of the Association of American Geographers85(1), 168-175. https://doi.org/10.1111/j.1467-8306.1995.tb01802.x

[7] Brown, W. (1995). States of Injury: power and freedom in late modernity. Princeton University Press.

[8] Gitlin, T. (1996). The Twilight of Common Dreams: why America is wracked by culture wars. H. Holt & Co.

[9] Taylor, C. (1992). Sources of the Self: the making of modern identity. Harvard University Press

[10] Young, I. (1990). Justice and the Politics of Difference. Princeton University Press.

[11] Kymlicka, W. (2000). Multicultural Citizenship: a liberal theory of minority rights. Clarendon Press.

[12] Sapolsky, R. (2009). Stanford’s Sapolsky On Depression in U.S. (Full Lecture) [Video]. Retrieved 19 October 2021, from https://www.youtube.com/watch?v=NOAgplgTxfc&t=55s&ab_channel=Stanford.

[13] Portwood-Stacer, L. (2010). Constructing anarchist sexuality: Queer identity, culture, and politics in the anarchist movement. Sexualities13(4), 479-493. https://doi.org/10.1177/1363460710370653

[14] Portwood-Stacer, L. (2010). Constructing anarchist sexuality: Queer identity, culture, and politics in the anarchist movement. Sexualities13(4), 479-493. https://doi.org/10.1177/1363460710370653

[15] Tucker, B. (1911). State Socialism and Anarchism. Fifield.

[16] Ferrell, J. (2012). Anarchy, Geography and Drift. Antipode44(5), 1687-1704. https://doi.org/10.1111/j.1467-8330.2012.01032.x

[17] Springer, S. (2013). Human geography without hierarchy. Progress In Human Geography38(3), 402-419. https://doi.org/10.1177/0309132513508208

[18] Rich, A. (1980). Compulsory Heterosexuality and Lesbian Existence. Signs: Journal of Women in Culture and Society, 5(4), 631-660. https://doi.org/10.1086/493756

[19] Duggan, L. (2002). The New Homonormativity: The Sexual Politics of Neoliberalism. In R. Castronovo, D. Nelson & D. Pease (Ed.), Materializing Democracy: Toward a Revitalized Cultural Politics (pp. 175-194). Duke University Press. https://doi.org/10.1515/9780822383901-008

[20] Puar, J. (2006). Mapping US Homonormativities. Gender, Place & Culture13(1), 67-88. https://doi.org/10.1080/09663690500531014