Light is a right: Living with SAD

This poem manifesto is the final outcome of the living with SAD project. 

Working with Hayden Lorimer, Hester Parr, Shawn Bodden, and people affected by low winter light, we've helped the participants help themselves, and been helped in return. 

On Saturday 25th we launched this poster, translating the vulnerability of the dark season into a claim of right which would benefit everyone. 

Light is a right is a collective expression of complex truths. The participants recognise themselves in phrases and images they coined, or which I overheard in the conversations and took down for them. What they won't do is pick out their own contributions like ripe strawberries. They will recognise themselves in the truths uttered by others. 

This is why group-work matters. In a project of shared consciousness such as this we learn by writing and, just as much, by listening. When a participant hears a simple descriptive truth that represents the experience of SAD, it resounds and, as a revelation that heals the relationship between self and other, in learning to listen to others they recover faith in learning to listen to themselves. 

The journalling the participants did between sessions was another way they could listen to themselves, for this is one characteristic of writing, that it comes from a location within us which is partly in shadow and, when it emerges, there are subtle tones of reality we hadn't realised we knew.

It's been one of the most enriching and tender patient-led projects that I've been involved with. My role was to describe the faith I have, that whenever a group of people who self-nominate to enter a process of shared consciousness, vulnerability will, gradually, emerge as a catalyst of change. 

To begin with, some were unsure of my proposal that we would compose a 'poetic manifesto'. The rhetorical abstractions and inflated confidence of the political manifesto is not a mode of language the ill are generally comfortable with, especially when an illness lacks a complete medical explanation – a platform. 

A poetic manifesto is different: it thrives on complexity, paradox, vulnerability, even playfulness. We were never quite sure which of us made the laugh-out-loud claim – enthusiastic demand, cheeky challenge: light is a right!

It belonged to everyone in the room. The phrase, in its playful assertiveness, is the apotheosis of the poetic manifesto. It marked the shift in the room, when a quote of confidence in shared truths allowed us to turn over the stone of vulnerability and, laughing, set free our desires. 

Why should Scotland continue to live in such an unhappy and ill-attuned relationship to its dreich climate? Why are our architecture, civic space, and domestic interiors, so sad, so alienated, and so characterised by paucity? What happened in terms of class, poverty, alienation, the despoliation of nature, and Empire, to produce such an all-encompassing alienation? Why could we not be Scandinavian?

I had told the group that, as well as offering one another peer-to-peer support, we would become a revolutionary cell, using the wisdom within our vulnerability to utter a challenge to Scotland. Light is a right! 

Why not change the nation's entire relationship to the elements? SAD would, by the time we had made it through winter together, emerge in the Spring sunshine as a potential – or poetical – catalyst for change. Light became a right for everyone. 

We never did fix a meaning on SAD, or solve it's symptoms.

The Patient-led revolution is especially vital in diseases like SAD, ME and Long Covid. Medically unexplained symptoms are vulnerable to prejudice. Patients are not scientists. Our manifesto is what we could make together: an articulate description of the complexity of SAD experiences. It doesn't offer a final explanation for the cause of SAD, let alone a 'cure'. Our solution was defined by the possible: description, imaginative, creative, detailed description. From this act of shared representation, allowing our vulnerability to exist and be witnessed, the complexity of symptoms to which any SAD individual is subject became something else. The talons of loneliness and isolation were loosened. We cried and we laughed.

And so, instead of solving SAD, together we created a new relationship to it.

The poster is an A3 risograph, produced in a first edition of 100 copies, 50 of which were shared with the participants and project team, and 50 of which are available for purchase, £10, from Studio Alec Finlay. 

We hope to publish a booklet version in the Autumn of 2023.

Below is an extract from the text.

light is a right! a communal manifesto for living in low winter light. We’re the summer children, and, Winter, it’s not you, it’s us: we’re so over. Whether we were born in this endlessly dreich place or washed up here, in a country lacking light, we have to winter here, watching the portions of day shrink, feeling our moods wind down with the clocks, until daily life is lived in darkness, and it feels as if the sky won’t be visible for months. Everyone gets sad sometimes, but not this SAD, so, while it’s not you, Winter, still, this is us – walking to work in the dark – and these are our feelings – walking home in the dark – knowing there’ll be another winter, as Time takes a rest, and another winter, when everything seems harder, and another winter, when everything costs more energy, and another winter, thieving light from us, and another winter, with this dread, this – let’s call it what it is – this illness. Let’s admit it, cosy bubble baths and herbal teas aren’t the answer. For now, we’ll put on a face that says I’m fine, for now, friends will become ghosts, while we worry the problem’s other people, worry they’re the only solution, worry they’ll catch this mood from us, as if it was a cold, worry that even sharing these feelings is over-sharing, worry they’ll feel our feelings as rain, worry we’ll wet them through so thoroughly they’ll never get dry again. For now, clouds have no concern for us, for now, even knowing what’s difficult is difficult, for now, missing our summer lives, we step back from the world’s threshold, for now, even though we long to belong, for now, we’re determined to do something, together or alone, to soothe the season. For now, we’ll say, Winter, you’re not deathly, you’re just a long spell of rest, which is needed, for now, we’ll get through the dark days, for now, accepting there’s less light for a reason, for now, affirming dark spaces are dead spaces, for now, remembering that when a tree dies it renews the wood, adding its share of light, air, and shyness. For now, Winter, you’re not the enemy, for now, we’re in this together, for now, if we suffer it’s our version of a lack you suffer from, for now, let’s agree we’ll allow you, and you’ll allow us, allow the limits that needn’t define us.

speech: the completion of I remember: Scotland’s Covid Memorial

When we began ‘I remember’, I said that, although we must honour the dead, together we must also make this a living artwork, because the pandemic isn’t over. How could it be, given the choice to allow the virus to periodically surges through us.

It isn’t over for the mother, who wrote me saying she, her two daughters, and their two fathers, are still shielding in their small world.

It isn’t over for the nurse, who wrote me saying, we’re almost at Dad’s three-year anniversary – I still miss him every single day.

It isn’t over for the Post Office worker, who wrote asking me to add her husband’s name, with love from her and their son, and that I should say he was open-hearted.

It isn’t over for the nurses, chapping on the door of Number 10, because Long Covid isn’t defined as a workplace injury – a base lie – and their futures are uncertain.

It isn’t over for Katie, who says:

I have

difficulty moving 

difficulty standing

difficulty eating

difficulty talking

difficulty breathing

it’s like

being frozen

in amber

I know it isn’t over; I recently caught Covid for the third time. I’m still recovering enough breath to read this.

It isn’t over because, this past week, so many people I know marked three years of chronic illness. They still have no medical help.

For most people lockdown was a time of constraint, worry, and also clarity: we were told, this is how we support one another. Some people continued to provide care, despite risks to their life and health.

There are people for whom lockdown felt stoically comforting, knowing others were sharing the limits that defined their lives.

The pandemic was – still is for many – a time of loss, grief, and worry; a time of kindness and neighbourliness; a time of loneliness and reflection.

Above all, the early seasons of the pandemic were a time of commonality, solidarity, and, in the motif of this memorial, support.

The pandemic revealed poverty and injustice – which communities are denied clean air, which can relax among trees, feeling the grass soft against their palms.

It must be admitted, today of all days, we have fallen away from that ideal of solidarity. We have lost the aspiration to create a world that is more just because it is defined by vulnerability, rather than privilege.

So, so many people have been left behind. Some, who lost loved ones, feel there will never be a reckoning; others must bear the strange change in their body, from strength to weakness, losing the ability to walk, work, play football with their child – all the ordinary joys which defined their lives.

Some, like my friend Garry, have the courage to face this difficult question:

how we carry 

why me?

 

depends on

what others see

 

me, I hold it

behind me

 

but he, he

has the bravery

 

to say

why not me?

Why not me? Why not my health that fails; why not my home that needs repair, why not my wages that cannot feed my family and heat my home.

This empathic understanding, that we – any of us, the we and the me – can fall into poverty, illness, or vulnerability, inspired the welfare state.

Today, who among us believes the government in London will support the newly disabled? Who among us anticipates the targeting of those on benefits? Today who among us believes this country can help 170,00 people with Long Covid when it hasn’t created a single dedicated clinic?

The scientists who stood alongside our politicians, offering some guarantee of truth, are gone. Smoke and mirrors, saying over and over the pandemic is over, doesn’t make it over.

This living memorial, woven into the trees of this much-loved landscape, asks that we remember lost loved ones, those who carry grief in their hearts, and the vulnerable – together and without exceptions.

When I invited people to record their memories, the brief touching stories they told created a collective book of remembrance and, if we are to return to the aspiration of a kinder fairer world, that text would be a true place to begin from.

I’d like to thank everyone who helped create and install the forty support artworks, and the memorial walk that you can make between them. 

Alec Finlay

23.3.23