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Friday, July 10, 2020

the new etiquette is just the ticket

The word etiquette comes from the French royal court, where it referred to small notes offering tips on good manners. Imagine something between a calling card and a speeding ticket.

Recently I've been experimenting with some poem mottos that might help communicate safer behaviour, as part of a research group Paths for All are involved in, devising guidance and advice on how we can adapt to public transport and travel in the midst of a pandemic. 

A poet isn't always good at expressing the clearest meanings, but they can sometimes find a phrase that is nuanced enough to suggest ways of behaving, without seeming judgemental – not that there aren't a lot of judgemental poets about these days! 

Coronavirus has left me unable to walk more than 150m and the nearest bus stop to my house is 250m away, just around the corner from my road. This has meant that the daily world of commutes and trips feels distant, so these poems weren't easy to write from personal experience. Most came from reading articles on changes in behaviour and suggested guidance on how to help people adapt, without adding to the inevitable anxiety we all feel. 

Many disabilities are hidden. And we all know that viruses are. That's why we have to look after one another.

See if you can compose some mottos yourself.


1.

 

keep a little distance

as a kindness

 

 

2.

 

imagine there’s a walking

stick sized-gap between us

that will help us

 

 

3.

 

a wee bow to say hello

is kinder than sharing germs

 

 

4.

 

etiquette used to 

mean a card 

of reminders


for good manners

now it translates

as shared respect

 

 

5.

 

north or south

cover your nose 

& mouth

 

east or west

staying at home

is best

 

 

6.

 

we’ve to do our best

it’s not a test

 

 

7.

 

cover your moth

open your ears

 

cover your nose

smile with your eyes

 

 

8.

 

take a step back

let the problem pass

 

 

9.

 

a tissue for 

a-tishoo

 

 

10.

 

kindness given

will come back to us

 

 

11.

 

catch a cough

in the crook

of your elbow –

keep your hands

for other things

 

 

Wednesday, July 1, 2020

crossword drawings

While I've been unable to walk, as a result of the impact of coronavirus, one of the ways I have been making art is these crossword drawings. They are available for sale priced £30 each.






























Thursday, June 18, 2020

I am protecting myself, but I don't feel protected

No-one knew the communities that coronavirus would affect worst, except that, in a way, we all did. We always do: those in poverty, the chronically ill, those individuals and communities that suffer stress caused by mental violence, anxiety, and trauma. As March passed into April the wartime poster mood of “we’re all in this together” morphed into telling graphs and photos of the deceased, many in blue uniforms. Now anyone who watches the news knows that the worst affected are, in broad brushstrokes: older people, especially men, BAME people, those who work on the frontline of care and provision, and, in terms of lockdown, victims of domestic violence. 


What struck me over recent weeks is the erasure of the experience of those at high risk, including the disabled, most of whom have been sheltering at home for months. The seeming reassurance of the term “high risk”, which was bandied about in the early stages, is, in reality a confused term, interpreted differently by government, health service, and supermarkets. Many people found themselves outwith that circle of care. They have crafted survival plans and depended on the kindness of others. Finding themselves in a corridor of uncertainty, unable to manage as they did, unsafe to go out, finding queues impossible, worried about deliveries, terrified of the risk hospital would expose them to, unrecognised in terms of need. Their experience is summed up in this quote, ‘I am protecting myself, but I don't feel protected’, from a report published by the Chronic Illness Inclusion Project.


I think especially of those with auto-immune system conditions, like a young woman I know, Catherine, who had to turn away her carers in March. She has been managing a severe condition alone. Catherine is a victim of the crisis, but also a resource as, over years of illness, she’s learnt resilience, using poetry and imagination as ways to imagine the ordinary world outside her door, visualising a walk each day.

 

It is a difficult truth that not every community can overturn statues. The good and bad versions of anger that flooded out onto the streets in recent days should not blind us to those who remain isolated indoors. If we’re serious about making a new world then we need to learn more than one lesson at a time. We need recuperative forms of imagination.

 

As the first wave of the virus stretched out its long chain, there were a trickle of stories about people who weren’t going to die but weren’t recovering either. Some were ill for weeks, some have now been ill for months, stuck in a limbo of breathlessness, muscle ache, and fatigue. 

A helpful account of long-term coronavirus was published by a professor of infectious diseases and picked up by the national media. At one point the professor sought to distinguish the nature of his own lingering condition from any “kind of post-viral syndrome”. I had to read that phrase over again. Then it sunk in: we’re still playing that game. As if one illness is somehow more real, and therefore more worthy of sympathy, or treatment, or funding, than another? The professor said people ‘need help to understand and cope with the constantly shifting, bizarre symptoms, and their unpredictable course…’ These are experiences that many of his patients with chronic illness could have helped him adjust to, because they’ve lived them for years. I hope the professor recovers and gets back to work, where he may listen to his patients a little differently. What we need now are patient-led models of recovery and resilience, for everyone who experiences long-term impacts.


There are only so many ways in which the human body can be ill and the experience of illness is only new to those who haven’t been seriously ill before. People with the virus talk about an early period of recovery, followed by relapses. Advice seeped out, to lie on your tummy and allow your body to breath and void the toxic phlegm from their lungs. For those caught in a feedback loop beyond the initial virus there has also been a lack of advice. 


Speak confidentially to researchers into ME/CFS and they expect thousands of new cases of the disease to emerge in the wake of the virus. People with ME were mostly triggered by a virus, for instance, glandular fever. In an era of auto-immune system illnesses medical science may devise a new post-covid acronym and thousands, perhaps tens of thousands, of lives will be affected. With a grim optimism, researchers hope that this new cohort will finally unlock funding for biomedical research. 

 

Studies suggest that after SARS 40% of survivors experienced symptoms of chronic fatigue and a quarter of cases developed long-term ME/CFS. British clinicians currently expect a third of people who survive coronavirus will experience some degree of post-viral syndrome. This is rarely mentioned in reporting which divides people deal into the dead and those who recovered. For some people coronavirus isn’t a few days fever, or a couple of weeks with the evil relative of a bad flu. For some the impact will last for months, years, or the rest of their lives. Personally, I know of two first-wavers who caught the virus in that avoidable week before lockdown. They are well into their 3rd month of severe symptoms. 


Viruses affect people differently. Until we evolve a portrait of any illness by listening to patient witness and studying medical fact there will be no shared vision of recuperation. That vision has to include the chronically ill. It isn’t enough to live in a fantasy where the ying of tragic deaths is offset by the yang of people coming off respirators. No-one comes off a respirator and walks happily down the road to Lidl. Again, we need as many models of recuperation as Joe Wicks fitness regimes.

 

The caricature of coronavirus as an illness in which people fulfil their allotted fate by dying, or pluckily recovering, will gradually dissolve. Blue Nightingales are heroic, and inspiring but, for many, recovery will involve rest at home and a process of imaginative adaptation that needs to be supported. 

 

It’s been said that we couldn’t have known what this virus would be like. We could have garnered some idea, if we’d asked those who live with chronic illness. Just as there are now neighbourhood networks of care, so there are bodies of knowledge created by those who live with chronic pain and disability, in particular, so-called invisible illnesses. Their insights would have been a helpful prepare for recuperation from this crisis. People can be given advice on how to adapt to lockdown, sustainable ways to live with constraint, how to best manage limited energy, how to make the best of the possibilities their lives offer, and, in practical terms, how to rest, which is a difficult skill. We still find it hard, as a culture, to listen and learn from illness and the ill.

 

In terms of the arts, there rightly exist campaigns to increase access to performances while venues are closed, but we also need models of creativity that include the housebound and bedbound. Culture is not always an event, a pleasant two hours at the end of the week. Creativity is a life practice. We can use the imagination to enrich a constrained walk or devise imaginative tweaks to how life is lived at home. And, in terms of disability, art need not always be an identity amplified: it has gentler, quieter modes of attention. As well as clapping, demonstrations, and revolts, we need to create images of recuperation, endurance, nurture, and care. We need to respect the measure of time that the chronically ill experience. Those into their 2nd and 3rd months are tired of being asked, are you not better yet?

 

Statistics prove the inequality of impact on some communities, but the reporting of those who have pre-existing conditions, always known to be high risk, is negligible. Is this because they are at sheltering at home, behind closed doors, in the grey area between the dead and the well? When the government suddenly announced it was safe for high risk groups to leave their homes many felt incredulity and disdain.

 

I applaud the Jacobin crowds, as long as protestors innovate in such a way as maintains social distancing so as to express solidarity with other communities at risk. After all, sentence can be passed down on a statue for a future date. It’s hard not to feel that, in addition to grief and indignation, there’s an economy of energy at work, as young radicals respond to injustice and fascists jeer at the shackles of lockdown. The energy or radicalism is unanswerable – you don’t make a revolution from tissue paper – but it’s also unavailable to some. (Still, it wasn’t the radical party who first damaged the solidarity of lockdown, it was a government advisor who fancied taking his wife for a birthday picnic). 

 

What to do then, in a culture filled with a clamour of sectional interests spurred on by anxiety, frustration and inequality, in which the government flounders in armbands? Wonderful local networks that emerged in some communities may adapt into innovative forms of social change. Many people find aspects of lockdown frustrating and upsetting, but also, sometimes, gentle, creative, and inspiring. Who knew this degree of change could happen so quickly and, fragile as it is, with such a sense of consensus? The right to access nature and clean air emerge as basic human rights, which only means that people with asthma were always pointing the way to a better life for everyone, or everything.

 

It turns out that coronavirus was like any illness, only more so, accentuating weaknesses, revealing latent conditions, respecting strengths, behaving in ways that are sometimes mystifying – happy hypoxia anyone? – at other times cruel. At the start of it all, friends I know with chronic illness, neurological and auto-immune system conditions felt a secret sense of relief, that their experiences may, almost overnight, become validated, better understood, or even researched and treated. Many have felt like bellwethers for years. In terms of prejudice, it wasn’t so long ago that a respected publication like the LRB was peddling myths of post-viral conditions as Yuppie flu. That won’t be possible in the future. In 2010 I had swine flu and its impact for four months which I spent bedbound with symptoms similar to coronavirus. I remember telling my GP about the experience afterwards and him saying to me that isn’t possible. After coronavirus I’m not sure that kind of presumption will wash.

 

I don’t want to press the case of my own niche identity as someone at risk in a way that competes with any other person’s risk. Vulnerability is not a competition, no matter what the twitterati think. I’m exhausted by the false narratives that sectionalism produces. And yet, in a time when illness itself is the issue, I wonder why, to such an extent, the ill themselves have seemed, well, largely invisible? Distant from the heroism of hospitals there will remain the dailiness of chronic illness and disability, the quiet disasters and noble feats of endurance.

 

The advice any knowledgeable medical expert would give to help prevent coronavirus descending into ME/CFS is to rest, rest and rest. Do not to push through the fatigue. It is an illness which many people experience as cyclic, with recovery followed by relapse in a pattern familiar to those with invisible illnesses. A culture of recuperation will share the creative aspects of resting, musing and imagining. We need to learn from the experts: the chronically ill. 

 

One of the first things I did during the crisis was to ask my friend Chris Watson for two audio walks I could share online, as a free resource for those in recovery, so they could access nature. 

https://tidesongs.bandcamp.com/album/two-audio-walks

In my own work as an artist poet, I’m reminded that the image is an act of witness and home for complex truths. Poetry can be a comfort, and, at times, the practice of poetry may seek, and even find, healing. During the crisis phrases have stayed with me as found poems: the nurse and writer who said of one patient, ‘he’s not the battle, he’s the battlefield’; the friend from Hong Kong whose idiomatic English reassured me, ‘every catastrophe carries collateral beauty’; or the Bulgarian friend who wrote that he hopes I am as healthy as a cucumber. That gave me a reason to lie a little longer in the sun.

 

Last year, working on a new book of poems reflecting on illness, pain and creativity, I tried to imagine the kind of revolutionary spirit we’ve witnessed recently, but as if it were coursing through the ill, in a utopian fantasy. I wonder if gentleness could exert itself as a social force? Today, on day 90 with coronavirus, I see that this could only be a fantasy and that troubles me.

 


The Revolution

 

then the ill came

in their blankets

raining pills down

 

on the truncheons

smothering the windows

of the palaces

 

with wads of

shapeless duvets

forcing forms

      

under the noses

of the inspectors

then it finally came

 

the day of the great 

demonstration

when every window

      

was thrown open

and from each one

a blanket was hung

 

 

Here is a free online creative tool-kit I gathered together as a response to the crisis. Feel free to share it:


https://www.dayofaccess.co.uk/2020/03/covid-19-creative-tool-kit.html

 

Alec Finlay is a poet and artist, and recipient of a 2020 Cholmondeley Award. He is a member of the new disability arts initiative #WeShallNotBeRemoved.

 

Sources

https://www.centreforwelfarereform.org

Thursday, May 7, 2020

David Wheatley: River Don Office

On a back road near my house once stood a hand-written sign for the ‘River Don Office’, pointing to a nearby lane. To my regret I never went to investigate, though I liked to imagine a bucket of water on a desk, processing its paperwork on fishing licenses and mulling cross-community projects with the river Dee. Since the sign’s removal I have reclassified a small portion of my brain as my own River Don Office, throbbing away night and day in sympathetic rhythm with the gurgle and flow on the other side of the park, halfway between where the Don rises in Glen Avon and its appointment with the North Sea.

Clambering into bed beside my son one night (we co-sleep) I am transported more dramatically to the river when I notice I’ve left the extractor fan on in the bathroom. Rather than get up to correct this mistake, I allow it to mutate into the outboard motor of a small boat, in which we set off, he and I, for a night cruise up and down the fast-moving river’s tricky waters. We chug downstream in the direction of Aberdeen, shadowing then losing then shadowing the railway line again. Out to sea we spot the moonlit outlines of the tankers, which often rest at anchor for weeks on end, waiting for the price of their oily cargo to rise before they come into harbour. Fearing a jaunt to Norway may be beyond us we turn back, passing the village and heading west again. 

In the mountains, there you feel free, even as they close benevolently round you, the high-sided pinewoods of Pitfichie and Clova Hill looming up in the moonlight as though about to pitch headlong into the current. Feet tucked under him where he kneels on the bow, my son stares into the silvery tide, with occasional glances over his shoulder to where I navigate. Soon we are closing in on the head of the Don, zig-zagging crazily in waters so shallow I feel us bumping along the bottom. What is this, I ask myself, a fantastical children’s book? – turning over where I lie in bed and brushing against the children’s books piled high in the cot beside the bed. A thin stream of drool has dampened my pillow, and by morning my carefully-drafted report for the River Don Office (in fact, these words) has been lost overboard.

David Wheatley

                                                                                                                                          

            

Thursday, April 9, 2020

for now


for now is an ongoing series of reflections on walking during the lockdown period, by Nicole Bell of Paths for All.


(I)

for now
a walk
is a kind of medicine

along with other essentials
nature is in very
limited supply

take today’s solitary walk
breathe, inhale,
look around you

bring it home
and treasure it
in safety


(II)

for now
a walk
is a reminder

of all we took 
for granted
forced apart

exchanging smiles 
from either side
of the path 

chats about the weather,
who’d have thought
we’d miss them?


(III)

for now
our evening walk
is a strange walk

jamais vu
the same steps
taken one

hundred times over
as if walked
for the first time

things will look 
different
after the storm

or perhaps
we will
see
with fresh eyes


Nicole Bell

Saturday, April 4, 2020

walking during co19

This blog is by the artist Gill Russell. 

She's been recording walks around her home for a new project, covidly walking, which, thus far, records 15 walks for 15 days, all departing from her house in Strathdon.













its peaceful making these lines
skylarks and snowshowers 
on the moor yesterday





Tuesday, March 24, 2020

lockdown






















(lockdown)

the odd walker
on the path

with an aura
of danger

24.III.20