Article
Comment
Politics
7 min read

What’s up with activism and what it is missing

As local elections occur in England, Councillor Elizabeth Wainwright is stepping down. Finding herself increasingly distant from activism, she asks if there’s any room for love.

Elizabeth Wainwright is a writer, coach and walking guide. She's a former district councillor and has a background in international development.

A protestor hold a megaphone up at a demonstration outside a building
A 2017 protest against London Fashion Week.

During my term as a Green Party District Councillor, I was once publicly congratulated by the local Extinction Rebellion (XR) group for taking on the new role of ‘Cabinet Member for Climate Change’.  

A week or two later, I was questioned at a Council meeting about whether I was part of XR – opposition Councillors wanted to know if I’d be using their “extreme rent-a-mob tactics” in my role.  

The local XR group are kind and knowledgeable and are making things happen. But to my Council questioners, this seemed to matter less than the fear of the ‘other’ – in this case, what they perceived to be a mob of environmental extremists that might do harm to the Council. It works both ways – I’ve also seen activist groups paint all elected Councillors with the same brush, assuming none of us care. It feels like there is little grace and a lot of judgement going round.  

I’ve been curious why local non-activist residents and Councillors might not be keen to engage with activist groups (the term ‘activist’ is a broad one, and this article isn’t long enough to analyse it, but activist groups are generally engaged in activities to bring about social, environmental or political change).

Some tell me that they’re put off by what they perceive to be self-righteousness, judgement, anger, and the ‘hippy’ identity. I am put off by some of these things too, however much the media might falsely amplify these qualities – but still, perceptions close down relationship and possibility, and this is one of the things that keeps me at arm’s length from the ‘activist’ label, particularly when it gets caught up in group identity and expectation too. At a time when we need to see change in so many things – the state of the environment, politics, social equality – I’ve been wondering why I feel a distance from the ‘activist’ identity.  

As well as getting elected, I’ve taken part in marches, signed petitions, joined social and environmental action groups. I want to walk alongside others who are doing something about the things that matter. But I have struggled to find the in-between of ‘slacktivism’ on the one hand (supporting causes largely online with little commitment), and intense commitment to a particular group or tribe on the other. And I am tired, because despite the protests, volunteering, and organising, the challenges seem bigger than ever. These efforts are important, but protesting the status quo isn’t enough.  

I look at the NGOs, political groups, roles, funding proposals, slogans, meetings and glossy branding that are often part of activism and civil society more broadly – and are tools I’ve used myself – and I find myself doubting that these things can really bring about the change we need in our relationship with each other and the planet. We need more than better branding, or more funding, or more campaigns. As Audre Lorde said, the “master’s tools will never dismantle the master’s house.” I find myself distancing from the urgency of activism, volunteerism, and campaigning in their current forms.  

I’ve felt public discourse and action become less patient, more certain, more fragmented, with little room for curiosity and open conversations.

As well as form, I also feel a disconnection from engagement with and discussion of the issues of our time. In my involvement in social and environmental action over 20 years, I’ve sensed the shift brought about by rapidly evolving technology and media, which mean social and moral norms are evolving too. I’ve felt public discourse and action become less patient, more certain, more fragmented, with little room for curiosity and open conversations – sometimes explicitly through cancel culture or more subtly through othering and unintentional judgement. I think of a song by Sam Fender called White Privilege which includes the lines  

“Everybody's offended… I'm not entirely sure the nitpicking can count as progression… Nobody talks to each other for fear of different opinions…”  

Perhaps that closing down of conversation is in part down to social media and its algorithms which respond well to noise, performance, and oversimplification – it is not a space designed to help us relate across difference and understand each other, yet this is vital if we are to create the change needed in ourselves and in the world.  

I want to be part of meaningfully and wisely addressing the world’s sickness, not desperately and loudly treating its symptoms. I have been wondering if there’s another way I might think about creating change. 

Author, educator and social critic bell hooks (who prefers her name written in lowercase) wrote her book All About Love because she was 

“thinking about how we love and what is needed for ours to become a culture where love’s sacred presence can be felt everywhere”. 

She laments the lovelessness that is pervasive in our society. She goes on to say,  

“profound changes in the way we think and act must take place if we are to create a loving culture”.  

Sometimes, the issues at stake demand that we weep, raise our voices, get angry. Jesus turned over trading tables in the temple when he saw the sacred space had been turned into a marketplace – he got angry. But ultimately, he asks that we love our neighbours, including our enemies.   

And yet sometimes I wonder whether we know how to love in the world as it is today. hooks says,  

“In the realm of the political, amongst the religious, in our families, and in our romantic lives, we see little indication that love informs decisions, strengthens our understanding of community, or keeps us together.”  

In her lectures on ending racism and sexism, she notices that her audiences, especially the young,  

“become agitated when I speak about the place of love in any movement for social justice” 

despite the great movements for social justice having emphasised love. Her listeners seem 

“reluctant to embrace the idea of love as a transformative force.”  

We need to see love as a transformative force though. We say we believe in it; we make films and write poetry about it, we see it guide communities during collective experiences like global pandemics, we turn our faces towards it, we seem to want it. Perhaps this is where the hope is – that we want love in its various forms, even if we are embarrassed to say so. Love is not naïve, it does not ask us to be nice and polite, or eternally optimistic. Its presence does not remove negativity, disagreement, people who let us down. But I think it gives us the eyes and tools to work together, and to stand in compassion before judgement. 

If we take love and affection for our neighbour and places seriously, understanding what it looks like in practice, then movements for change can begin right where we are – in our language, in our community, in relationships that ripple out. In a placeless and disconnected age, perhaps this is the kind of activism that would help us heal ourselves as well as the world. Author Simone Weil said that  

“the gospel makes no distinction between the love of neighbour and justice.”  

I am becoming drawn to a love-led activism, an activism that is made from the hard day-to-day work of listening, and patience, and loving what’s sometimes hard to love. It might mean taking time to build relationships with people who aren’t like us. It might mean breaking out of our institutions and tribal groups, hearing each other across difference, and imagining new possibilities together rather than form ever-tighter clubs. It might mean getting soil not screens between our fingers, rooting in relationship, slowing down, paying attention. Whatever it looks like, it must appeal to both activists and non-activists, because we must all be involved in calling forth new worlds.  

The Bible is full of calls to love justice, to defend the weak, to provide for the poor and hungry, to defy the authorities when we need to – but to do all this, as Paul says, “rooted and grounded in love”. Micah says,  

“what does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?”  

As bell hooks knew, justice goes hand-in-hand with love. It is hard for one to exist without the other.  

We can choose to open up conversations or shut them down, to walk with others or retreat behind ideological lines, to stand in judgement or relationship, fear or love.

Perhaps it doesn’t matter whether we’re catalysed by anger, indignation, love, or care – but it matters what we go on to do with that spark. We can choose to open up conversations or shut them down, to walk with others or retreat behind ideological lines, to stand in judgement or relationship, fear or love. I think about what might come next when I stand down as a District Councillor at the next election, following a pull to do justice, and to love kindness more than belong to a political tribe. If we choose, we could build a loving culture, weaving a social fabric where activists and non-activists can see past current paradigms and feel able to work together, holding each other up as neighbours whilst nurturing beauty, hope and the becoming world. It may have no clear identity, it may not suit the noise of social media, but this is work that I want to be a part of.

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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