A disabled artist in lockdown: Organise. Support. Create.

On The Island

On the Island
We experience
Isolation alone
Together shielded
By unwanted arms
Clashing about
Like seas crashing
Smashing against
Experienced isolationists
Together alone
On The Island

During week two of the first lockdown, Boris Johnson promised to put his arms around vulnerable people. Disabled Activists felt far from vulnerable. Used to being isolated we have experience others would find valuable if only they’d include us.

Rather, early on we became aware of increased discrimination. The incidence of Do Not Resuscitate notices over our hospital beds increased, death ran rampant in nursing homes, the grim reaper visited people with learning disabilities more often than anyone else, paid carers came to our homes without Personal Protection Equipment, without declaring themselves covid free. There was no care or worry for those on section incarcerated in psychiatric hospitals. The government enabled local authorities to rescind their obligations under the Care Act. This came with a raft of negative language based on the deserving/undeserving conundrum. We were extremely vulnerable or not. Meanwhile, some non-disabled people jumped on the bandwagon pressurising their GPs to define them with our new labels – all for a food parcel or vitamin D tab (both of which were time-restricted) and limitless postings in the mail and online from Matt Hancock.

A Tissue of Haikus

Madam Corona
Stalks the corridors of home
New institution

She legislator
Laying down dark instruction
Of death penalty

We are here inside
Climbing up the wall paper
Reeling from darkness

Psychiatric Nurse
We ready opposition
To isolation

Viva the revolt
Our fight back is survival
Depose these care homes

Our response. Organise. Support. Create. We did this individually and collectively. Our organisations aspired to continue providing services, activists set up supportive groups like Facebook’s The Bunker where we offloaded worries, raised issues, heard each other and provided advice. Looking ahead #WeShallNotBeRemoved (an informal network of disabled artists) insisted that we would not lose ground previously gained and issued a manifesto; 7 Principles of Inclusion. Much the same as previous demands but a useful reminder that there would be ‘Nothing About Us Without Us’. We linked into covid support funds. Online Journal Disability Arts Online (DAO) which exists to advance Disability Arts and culture crowdfunded two series of covid commissions. Janine Booth used social media to collect poems for an anthology; Coronaverses; Poems From  Pandemic. In our stillness, the signs of an active movement shimmered.

Of myself. My 2020 guide words were troubadour, collaborator, workshopper. Nothing stood in my way. Technology, Zoom in particular allowed me to facilitate my groups, provide workshops…. maybe with falling numbers (Zoom is not accessible to everyone) but with loyal ‘die hard’ crews. I visited new places and was particularly keen to land a gig and a workshop at The Staying Inn (a virtual pub) which allowed me to stand outside my usual box of disabled poet and to become a pub poet with the shared experience of using pubs. I stumbled through my workshop and discovered that I tend to make too many assumptions about what people know. But, aye! I’ve got a new sequence of poems awaiting publication ), found a welcome on the Together 2012 festival site, a paralympic legacy project and still a largely free Disability Arts and Human Rights Festival created by Disabled People and Disabled People’s Organisations. I continued my weekly contributions to DAO, my 5 days a week submissions to my Outside In (online gallery), (a platform for artists who face significant barriers to the art world, largely based at Pallant House, Chicester) which promotes me as an Artist/Ambassador and who provided regular online workshops for their Ambassadors and I was delighted to find more centres interested in exhibiting my visual and collaborative works.

With respect to these named organisations as a Disabled Artist, I feel as if I am part of centres that promote my interests and activities. Whilst they host my work, they also offer support, present opportunities and from time to time pay for my involvement and participation. Their existence provides me with an audience, an opportunity to engage in conversations and to realise what people in extended networks think of my work which I find useful.

Something new too, I found time to explore poetry forms, dreamed up new prose series, discovered tankas’, monokus’, and haigas’ through Facebook’s Daily Haiku. Roughly speaking a haiku is a three-line poem of 17 syllables, a monoku a single line poem of 17 syllables, a tanka a 5 line poem of 31 syllables and a haiga a composite of a haiku and an image on the same page. Rooted in Japanese culture all these forms are open to different shapes in western culture but remain worthy of thought and exploration.  Audio and video work came to me more easily. I developed lockdown projects inspired by #texturehuntergatherer a project established by artist Liz Atkin in support of needs accruing from her own mental health issues. My social awareness developed. I gave activist vent to my anger through my blog page The Many Haikus Of The Newt and performed for Extinction Rebellion.

I lost two friends and was given cause to worry about others but covid and the lockdown gave me more. It improved my practice and rekindled my hope.

To Corona (After Bob Dylan’s To Ramona)

Come closer
Shut softly more deathly our eyes
The pangs of your sadness
Shall pass as we all demise
The flowers of the grave yard
Though Absent
Are lifelike in mind
And there’s no sense denying
You dealt to the dying
A virus that no one can find

You cracked and you whipped
And wrote a death list
And smiled your skeletal grin
Your stealthy still movements
Still linger the isolation i’m in
It causes grief to our true hearts
To see you still trying to be a part of
A world not wanting you here
Its a goodbye we bid
Try to rid this covid
To a world still left shaking in fear

I can see your ahead
As we’re counting the dead
Numbers getting higher each day
We can say vaccinate
The govement left it too late
Work faster without delay
Cold mortuaries stinking
Undertakers are getting well paid
Yet there’s no one to beat you
No doc can defeat you
As we stay behind this old stockade

I’m told that your leaving
And I should stay most alert
I will stay alerter than you
I won’t really believe that
Boris PM you got
Who won when it was our turn to lose
From China and France in turn
Your viciousness stems
Like pneumonial flu
Treatment is due
Wash hands eliminate germs

I’ll forever avoid ya
Stay in lockdown
Stay clear of your sinister sting
For deep in my heart
This pulse to my life it will cling
To those who have passed
I will have to pass last
Living a life is what I will do
And someday covid
You   bad hybrid
I’ll finally be clear of you

Richard Downes is an emerging socially engaged activist poet/artist with personal experience of disability who has been an active participant in the Disability Movement for 30 years

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