Article
Comment
Death & life
4 min read

A covering of feathers for the terrors of the night

How to struggle with the burden of other people's suffering.
a pile of feathers.
Evie S. on Unsplash.

It’s one of the sad facts of life: that many of us at some point will see our parents get old and fade away. Sigh. It doesn’t matter how well prepared you are or how much you’ve thought about it before hand, the reality of a fragile mum or an exhausted dad can break your heart.  

I’ve talked to my parents about this for years here and there. We’ve done lots of joking about seeing them off with a pink pill in the sherry, or ‘it’ll be a pillow for you Pa, if you’re too annoying’ – type thing. But when they left after Sunday lunch a couple of weeks ago, I had to clutch my husband. He lost his own mother last year… we’re still fluttering around the gap she’s left in our family. And now there’s my beloved olds too, looking diminished and moth eaten and moving at crepuscular speed. Ask Dad how he is these days, and he says ‘Old, dear’, and won’t elaborate further. 

I can cope with this when it’s in short bursts. Visiting them for lunch or taking them out on a trip is OK and manageable, and there is still joy in family occasions. Mum’s birthday was full of love, even though she took all afternoon to open her cards and became hopelessly confused about who’d given her what.  

But staying with them… that’s hard. Seeing the dust thick over the spare room; worrying about just how long that bowl of leftovers has been in the fridge. I whip about as unobtrusively as I can, scrubbing the bottom of the washing up bowl or putting their jerseys in a wash. I don’t want to be annoying – they won’t accept help and I’m not going to push – but it makes me sad. In particular I hate that my mum is in constant pain from crumbling bones, and that dementia has stolen her mind. Also, that as a consequence, Dad is irritable with her; he who has always adored her so much. 

I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain. 

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Since childhood, I have struggled with the burden of other people’s suffering. I sometimes wonder if I’m exaggerating when I think about how much I mind, but I don’t think I am. I can only manage if I’m really ready for it. With my counselling clients that takes the form of very firm boundaries, regular supervision, colleagues to talk to etc… but with family it’s much harder. It’s just your own naked, soft-bodied self-shrinking from all the nettles and thorns – like a hermit crab without a shell.  

So when I went down to Mum and Dad’s this time, I felt the need to prepare. ‘Put on the armour of light,’ St Paul says, which sounds just the thing. I hardly slept last time, tossing and wriggling through small-hour horrors with my neck hurting and a feeling of tears not being far away. What to arm myself with though? 

The answer came in the form of an ancient poem - Psalm 91. I was listening to a Premier Radio presenter who is a pastor – a big, tattooed fellow with rings in his nose and lip – and he said it was his main defence when his wife was diagnosed with cancer. So, I looked it up, and I loved it. It was all about how the Lord will cover you with his wings and keep you safe from the terrors that visit in the night and the pestilence that stalks by day, or words to that effect.  

Malcolm Guite (a poet and priest whose writing I love) says you have to treat Psalm 91 with care: it was the one Satan tempted Christ within the wilderness, challenging him to throw himself from the temple roof and God would send his angels to catch him (as it says in the psalm). It’s not to be taken literally, this psalm: you can’t deliberately put yourself in harm’s way and expect to be immune because you’re a Christian, like some of the vehement anti-vaxxers around the world who think faith alone will protect them from lethal diseases. But the message is that if you put your trust in God, he won’t let you be damaged in any important or lasting way by the evils of the world. 

I memorised as much of it as I could. And then when I woke in the night – inevitably – with the dread hovering over me, I kept thinking, ‘The Lord will cover thee with his feathers’. I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain and muddliness and Dad’s frustration and my own fear. They were like malevolent ghosts drifting through the dark, menacing and cruel. But Mum and Dad and I, our actual selves, were curled up safely, warm and hidden with the great wings over us.  

And eventually, I was able to go back to sleep. 

Review
Books
Care
Comment
Psychology
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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