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6 min read

For want of better words... the impact of the indescribable

Confronted with a question about belief, Henna Cundill found herself stumbling for words. She contemplates the link between our self-identity and what we can communicate.
A woman stops in her stride down a street and pensively runs her hand through her hair as she looks to the side.
Joseph Frank on Unsplash.

I recently got into conversation with a young man who asked me, “Do you believe in God?” When I replied, “Yes,” I almost regretted it, because his next move was to ask, “Why?” and I found this question troublingly difficult to answer.  

Of course, I could have dredged up the old philosophical arguments for the logical existence of God – but none of that would have really captured the thing I have no words for. Belief is like… Oh, what is it like? A glitch… no, a glimmer… no, like a glimpse of… No. Goodness. What is it? I’m lost for a word or even a metaphor that will somehow express what it feels to say “yes” and “I believe in God” and in that moment, even if only for a moment, to feel oneself transported or transposed out of this tiresome, human existence and into something that is... well, it’s something…  

I think it's fair to say that conversations about believing in God are unusual these days, especially when the circumstance is an 18-year-old lad talking with a woman in her late 30s – albeit the lad in question was a philosophy undergraduate and we were at Cumberland Lodge, where such conversations are welcomed amongst those of all faiths and none. Even so, it still felt rather unusual to be asked a question like that, not out of hostility but just casually over dinner, and to see him genuinely and respectfully interested to hear what I might have to say in response.  

Eventually I did come up with some kind of an answer; I can’t remember what. And naturally, I turned the question back on him. Turns out he did believe in God, in fact he was Jewish, so he stumbled out some kind of answer too, but I think it's fair to say that he was hardly more erudite than I was. Eventually, we both agreed that it was rather difficult to describe the indescribable, and our conversation turned to rather easier topics - the food, the weather, geopolitics... 

 

There is a loneliness to the feeling that there is a bit of ourselves that cannot be valued because it cannot be shared, and it is hard to recognise a part of our inner world as ‘real’ and valid if it cannot be communicated and affirmed. 

The question of believing in God was done with. Yet here I am weeks later, still pondering why it was so hard for me to articulate what it means to live with that belief, and why that part of the conversation ended, but still felt so unfinished.  

Has faith always been so indescribable? I suspect it rather has not. These dark evenings always tend to lure me to my bookshelves, seeking out my “comfort books” that I read and reread year after year. Mostly cosy fiction of course, but alongside those, a non-fiction favourite is Sheila Fletcher's, Victorian Girls: Lord Lyttleton’s Daughters. The book is a fascinating study of a family of young women in the Victorian era, faithfully compiled from their own real letters and diaries, so that the voices of Meriel, Lucy, Lavinia and May Lyttleton themselves can all be heard clearly on every page. I just love to read this book over and over again, entering into the hopes, sorrows, loves and ambitions of these young women – so similar and yet so different to my own.  

One thing that stands out particularly is how clearly and easily they each articulate their sense of faith. They were, of course, heavily schooled in Victorian public piety, but there is most certainly a real faith there too. A favourite passage of mine is an excerpt from the teenage diary of Lucy Lyttleton, recounting the day of her Confirmation. She speaks of a ‘nice and stilling’ drive to church, with her parents either side in the carriage, and then:  

I seem to remember nothing very distinctly till I went up and knelt on that altar step, feeling the strangest thrill as I did so… and I know how I waited breathlessly for my turn, with the longing for it to be safe done, half feeling that something might yet prevent it. 

Oh, to be so thrilled by a religious ritual, and to have both the words and the courage to write about it. After all Lucy, what if someone might be reading your diary 150 years later?  

In mainstream society nowadays, most of us simply don't talk about faith, religion, and what it all means to us personally in that way. It’s not the done thing in a (presumed) secular society. Consequently, it is now very hard to write about it too. Yet, many philosophers in the past century have observed a link between our self-identity and what we can communicate. For example, philosopher Charles Taylor describes how our sense of ‘self’ is formed in “webs of interlocution” wherein what we take to be “good” relies on what we can effectively talk about, and thus have affirmed by those we talk to. If we turn Taylor’s idea around, might we say that when there are parts of ourselves that we cannot talk about, parts for which we cannot find social recognition and affirmation, then we cease to value those parts of ourselves as good, or may cease to recognise them at all? 

 With that comes a sense of isolation. There is a loneliness to the feeling that there is a bit of ourselves that cannot be valued because it cannot be shared, and it is hard to recognise a part of our inner world as ‘real’ and valid if it cannot be communicated and affirmed.   

To me it feels that, as we talk about faith less and less, and as the language of faith becomes ever more confined, not even just to private conversations but to our own inner worlds, our “webs of interlocution” are beginning to shrink and disintegrate – until believing in God can feel more like dangling on a loose and solitary strand than being part of any kind of web. It’s a lonely place to be – there is a part of me that feels important, but no one can affirm it.  

And yet, by simply asking the question of each other, and being ready to listen respectfully to whatever answer was forthcoming, it seems that me and a teenage lad managed to connect two lonely strands together. It was of no consequence that we worship in different faith traditions, or that neither of us really found the words to say what we wanted to say – a conversation took place, and a certain web of interlocution started to form. For some, reading this, there may be a feeling of resonance, or a moment of understanding, and perhaps that too adds a little to the web, as different people’s words and thoughts and experiences begin to connect across different times and places.   

Webs do more than just create connection; webs capture things too. Perhaps, as this web spreads between different readers and thinkers and speakers, that’s what will happen to this question of believing in God. After a certain point, such a web may even become large enough and robust enough to finally start to capture some useful words, or an apt metaphor, that will really help me to say something about what it means to have faith. To be able to say it is to be able to share it, and in these lonely times, being able to say something is really not nothing.  

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7 min read

We don’t have an over-diagnosis problem, we have a society problem

Suzanne O’Sullivan's question is timely
A visualised glass head shows a swirl of pink across the face.
Maxim Berg on Unsplash.

Rates of diagnoses for autism and ADHD are at an all-time high, whilst NHS funding remains in a perpetual state of squeeze. In this context, consultant neurologist Suzanne O’Sullivan, in her recent book The Age of Diagnosis, asks a timely question: can getting a diagnosis sometimes do more harm than good? Her concern is that many of these apparent “diagnoses” are not so much wrong as superfluous; in her view, they risk harming a person’s sense of wellbeing by encouraging self-imposed limitations or prompting them to pursue treatments that may not be justified. 

There are elements of O-Sullivan’s argument that I am not qualified to assess. For example, I cannot look at the research into preventative treatments for localised and non-metastatic cancers and tell you what proportion of those treatments is unnecessary. However, even from my lay-person’s perspective, it does seem that if the removal of a tumour brings peace of mind to a patient, however benign that tumour might be, then O’Sullivan may be oversimplifying the situation when she proposes that such surgery is an unnecessary medical intervention.  

But O’Sullivan devotes a large proportion of the book to the topics of autism and ADHD – and on this I am less of a lay person. She is one of many people who are proposing that these are being over diagnosed due to parental pressure and social contagion. Her particular concern is that a diagnosis might become a self-fulfilling prophecy, limiting one’s opportunities in life: “Some will take the diagnosis to mean that they can’t do certain things, so they won’t even try.” Notably, O’Sullivan persists with this argument even though the one autistic person whom she interviewed for the book actually told her the opposite: getting a diagnosis had helped her interviewee, Poppy, to re-frame a number of the difficulties that she was facing in life and realise they were not her fault.  

Poppy’s narrative is one with which we are very familiar at the Centre for Autism and Theology, where our team of neurodiverse researchers have conducted many, many interviews with people of all neurotypes across multiple research projects. Time and time again we hear the same thing: getting a diagnosis is what helps many neurodivergent people make sense of their lives and to ask for the help that they need. As theologian Grant Macaskill said in a recent podcast:  

“A label, potentially, is something that can help you to thrive rather than simply label the fact that you're not thriving in some way.” 

Perhaps it is helpful to remember how these diagnoses come about, because neurodivergence cannot be identified by any objective means such as by a blood test or CT scan. At present the only way to get a diagnosis is to have one’s lifestyle, behaviours and preferences analysed by clinicians during an intrusive and often patronising process of self-disclosure. 

Despite the invidious nature of this diagnostic process, more and more people are willing to subject themselves to it. Philosopher Robert Chapman looks to late-stage capitalism for the explanation. Having a diagnosis means that one can take on what is known as the “sick role” in our societal structures. When one is in the “sick role” in any kind of culture, society, or organisation, one is given social permission to take less personal responsibility for one’s own well-being. For example, if I have the flu at home, then caring family members might bring me hot drinks, chicken soup or whatever else I might need, so that I don’t have to get out of bed. This makes sense when I am sick, but if I expected my family to do things like that for me all the time, then I would be called lazy and demanding! When a person is in the “sick role” to whatever degree (it doesn’t always entail being consigned to one’s bed) then the expectations on that person change accordingly.  

Chapman points out that the dynamics of late-stage capitalism have pushed more and more people into the “sick role” because our lifestyles are bad for our health in ways that are mostly out of our own control. In his 2023 book, Empire of Normality, he observes,  

“In the scientific literature more generally, for instance, modern artificial lighting has been associated with depression and other health conditions; excessive exposure to screen time has been associated with chronic overstimulation, mental health conditions, and cognitive disablement; and noise annoyance has been associated with a twofold increase in depression and anxiety, especially relating to noise pollution from aircraft, traffic, and industrial work.” 

Most of this we cannot escape, and on top of it all we live life at a frenetic pace where workers are expected to function like machines, often subordinating the needs and demands of the body. Thus, more and more people begin to experience disablement, where they simply cannot keep working, and they start to reach for medical diagnoses to explain why they cannot keep pace in an environment that is constantly thwarting their efforts to stay fit and well. From this arises the phenomenon of “shadow diagnoses” – this is where “milder” versions of existing conditions, including autism and ADHD, start to be diagnosed more commonly, because more and more people are feeling that they are unsuited to the cognitive, sensory and emotional demands of daily working life.  

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help.

O’Sullivan rightly observes that some real problems arise from this phenomenon of “shadow diagnoses”. It does create a scenario, for example, where autistic people who experience significant disability (e.g., those who have no perception of danger and therefore require 24-hour supervision to keep them safe) are in the same “queue” for support as those from whom being autistic doesn’t preclude living independently. 

But this is not a diagnosis problem so much as a society problem – health and social care resources are never limitless, and a process of prioritisation must always take place. If I cut my hand on a piece of broken glass and need to go to A&E for stiches, I might find myself in the same “queue” as a 7-year-old child who has done exactly the same thing. Like anyone, I would expect the staff to treat the child first, knowing that the same injury is likely to be causing a younger person much more distress. Autistic individuals are just as capable of recognising that others within the autism community may have needs that should take priority over their own.   

What O’Sullivan overlooks is that there are some equally big positives to “shadow diagnoses” – especially as our society runs on such strongly capitalist lines. When a large proportion of the population starts to experience the same disablement, it becomes economically worthwhile for employers or other authorities to address the problem. To put it another way: If we get a rise in “shadow diagnoses” then we also get a rise in “shadow treatments” – accommodations made in the workplace/society that mean everybody can thrive. As Macaskill puts it:  

“Accommodations then are not about accommodating something intrinsically negative; they're about accommodating something intrinsically different so that it doesn't have to be negative.” 

This can be seen already in many primary schools: where once it was the exception (and highly stigmatised) for a child to wear noise cancelling headphones, they are now routinely made available to all students, regardless of neurotype. This means not only that stigma is reduced for the one or two students who may be highly dependent on headphones, but it also means that many more children can benefit from a break from the deleterious effects of constant noise. 

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help. I suspect the rise in people identifying as neurodivergent reflects a latent cry of “Stop the world, I want to get off!” This is not to say that those coming forward are not autistic or do not have ADHD (or other neurodivergence) but simply that if our societies were gentler and more cohesive, fewer people with these conditions would need to reach for the “sick role” in order to get by.  

Perhaps counter-intuitively, if we want the number of people asking for the “sick role” to decrease, we actually need to be diagnosing more people! In this way, we push our capitalist society towards adopting “shadow-treatments” – adopting certain accommodations in our schools and workplaces as part of the norm. When this happens, there are benefits not only for neurodivergent people, but for everybody.

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