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


A Grief Observed

Using C. S. Lewis’ A Grief Observed as a starting point, I write on the identity we find in others and how one comes to grieve this loss of sense of self when they lose the other. I discuss how we find ourselves done and undone by others in this sense, in that community may offer us a sense of wholeness but it can also decentre us in loss. Although this decentred understanding of ourselves is hopeful, even if it is hard in times of loss; we are made and remade, done and undone by both ourselves and the other and we continue to grow.


“If H. ‘is not’, then she never was. I mistook a cloud of atoms for a person. There aren’t, and never were, any people. Death only reveals the vacuity that was always there. What we call the living are simply those who have not yet been unmasked. All equally bankrupt, but some not yet declared.” C. S. Lewis, A Grief Observed [1]

I do not know if it is because Lewis is ultimately questioning God’s fairness in grief or if there is an irony in me in particular finding such solace in a line from a very Christian author on a topic of this nature, but I love this book and I love this line in particular. This line reminds me of that popularised Rumi quote where he says that we are, “the universe in ecstatic motion” [2], telling us not to act so small for this very reasoning. I really like this thought that we are all part of this great cosmic dance, and of course I have to call it, existence that is, a dance when discussing Sufi mystics. It is such a wonderful notion and it simultaneously produces so much meaning and so much insignificance.

As much as I think I believe in nothing, I do get a lot of solace from spiritual literature like this. This idea of existence as a dance, an unravelling, a great doing and undoing, as everything and nothing all at once makes me think, well, if we are everything, if we are the universe in ecstatic motion then is there a point to all of this? If we are so expansive and so reduced, so present and so absent, is there any sense to it all? My brain comes to Alan Watts here, an interesting fellow, who said, upon realising a messy meaningless to it all that, “you only go on, if the game is worth the gamble” [3]. His idea is that, well it might all be nothing, but it might also be everything, so maybe it is best to hedge one’s bets, and to be honest, if that is all one has to go on, it is a pretty safe choice to carry on. One of my favourite nuggets of wisdom which Watts ever gave was this:

The meaning of life is just to be alive. It is so plain and so obvious and so simple. And yet, everybody rushes around in a great panic as if it were necessary to achieve something beyond themselves.” [4]

I really like that last part, “as if it were necessary to achieve something beyond themselves”, but when one comes to that in a time of grief, at a time when a part of oneself feels gone insofar as the other was not fully where they were and the self not fully where I was, we were in the crossing between one another; we decentred each other in such a way that I was a part of the other and the other a part of me, we were both part of the same whole. As connected beings who constantly live in the in-between as we pull on each other’s gravity and motion, how are we meant to not grasp out beyond ourselves in such a futile manner when part of ourselves is always beyond us? Can I ever be content as incomplete? There is this beautiful episode of Star Trek: The Next Generation called The Chase where the character of the Ancient Humanoid says, “there is something of us in each of you, and so, something of you in each other” [5] and it is this point right here: I may hate the “they live on in you” spiel, but we exist in the other, and they exist in us, constantly decentred in one another’s gravity and motion. We are not just one person, we never really could be. We are forever made and remade by the other, reaching beyond ourselves until they are necessity, so that when you lose them, when they are “unmasked”, as Lewis would phrase it, it is as though an amputation takes place.

In speaking of becoming “unmasked” in death from Lewis and weaving through Watts, I am reminded of Gold Leaves by G. K. Chesterton, who Watts would often quotes in his lectures. It is a beautiful hymn which is ultimately about growing old and finding God in everything, and although I am not religious I do adore this hymn for its message as I seek to find that certain magic in everything. I often sit and marvel at the fact that those clouds of atoms may do the beautiful things they do in the moment that they do them, and the certain magic in knowing the impermanence to it all, it only makes it all the more precious. As I have it memorised, and as it is so very beautiful, I will leave you with Gold Leaves today:

Lo! I am come to autumn,
When all the leaves are gold;
Grey hairs and golden leaves cry out
The year and I are old.

In youth I sought the prince of men,
Captain in cosmic wars,

Our Titan, even the weeds would show
Defiant, to the stars.

But now a great thing in the street
Seems any human nod,
Where shift in strange democracy
The million masks of God.

In youth I sought the golden flower
Hidden in wood or wold,
But I am come to autumn,
When all the leaves are gold.


Live Long & Prosper


References

[1] Lewis, C. (1961). A Grief Observed. Faber & Faber.

[2] In Your Light – Rumi by st64. Hello Poetry. (2014). Retrieved 28 November 2021, from https://hellopoetry.com/poem/610590/in-your-light-rumi/.

[3] Watts, A. (1960). A Game That’s Worth the Candle. Musixmatch.com. Retrieved 28 November 2021, from https://www.musixmatch.com/lyrics/Alan-Watts/A-Game-That-s-Worth-the-Candle.

[4] Watts, A. (1989). The Culture of Counter-Culture: Edited Transcripts (Love of Wisdom). Tuttle Publishing.

[5] Roddenberry, G. (Writer), Menosky, J (Writer), Moore R. D. (Writer), & Frakes, F (Director). (1993, April 26th). The Chase (Season 6, Episode 20) [Television series episode]. In Berman, R. (Executive Producer), Star Trek: The Next Generation. Paramount Television.

Growing Around Grief

I write on Lois Tonkin’s concept of growing around grief and how one learns to live with grief, focusing on a typical bereavement reaction where, although one may integrate the loss and the absence of the other, they still carry the grief. This is to say one does not finish with grief, rather that it is lived and an embodied experience that we may grow with.


Image Description: Growing Around Grief by Lois Tonkin, 1996 - circles depicting that although grief may not reduce in size we continue to grow so that the grief becomes comparatively smaller. the text in the circles reads, "people think that grief slowly gets smaller with time. in reality, grief stays the same size but slowly life begins to grow bigger around it"
End of Image Description

Tonkin’s concept of growing around grief is one that I knew of but had never quite seen so visually until today. It is just one depiction of a definitionally ambiguous concept, grief that is. It is a funny thing to try to define grief, an experience with such universality, and yet when it comes to its embodiment, grief as lived, felt, and truly known beyond its descriptive characteristics, we falter in expression and dialogue, decentred in the loss of the other, as if they buried our words with them. We come to know grief in as many ways as we come to know loss, there is this universality in the differences known to the pains we feel when the other leaves us. There is this commonality to the weight of our losses, to the different ways we come to know the terrible sadness and the bitter joys held in the waves of grief yet to come.

However, Tonkin’s conceptualisation of grief, it is an interesting one and one that holds a lot of truth insofar as grief will remain in that it is typically something that is lived with rather than a finished process, that is to say that one does not reach an end point in their bereavement. You never really finish grief, one may move past the initial bereavement reaction in a typical manner without complications, but grief remains like a shadow waxing and waning in the light of our days as we carry on. And we do carry on, carrying in more ways than one as we are set to carry our losses as we carry our love for the rest of our days. There are of course landmarks of a typical trajectory of grief, but even once things have steadied, once one has learnt to live in the absence of the other, the grief still resurfaces at points: typically this would be at anniversaries and reminders and so on, but life grows around it. The individual grows around the loss. It becomes easier to live without the other, even when their absence once seemed unbearable and unimaginable; life grows, you grow, and it becomes okay again. But yes, I just really like this visual representation because it is true, although the grief may be something one always bears, “slowly life begins to grow bigger around it“, one continues to live and grow and learns to be okay again because it will be okay again.


Live Long & Prosper


References

Growing Around Grief – Whats your Grief. Whats your Grief. (2021). Retrieved 22 November 2021, from https://whatsyourgrief.com/growing-around-grief/

Tonkin, L. (1996). Growing around grief—another way of looking at grief and recovery. Bereavement Care15(1), 10-10. https://doi.org/10.1080/02682629608657376