A letter to my MP

I’m a woman in my fifties with an older sister with Down’s syndrome and a 92 year old mother who recently broke a hip. My experience of residential care is long term where my sister is concerned and more recent where the hospitalisation/nursing home care of my mother is concerned but in both instances, I can see, and others re-enforce that the current barring of visits from loved ones is having a hugely detrimental effect on people’s mental health – an effect that goes far beyond an easily dismissed ‘well-being’ impact into the difference in my mother’s case between recovery and rehabilitation and terminal decline.

My sister’s care home closed to visits in March 2020. Prior to this she had come home to my mother and me once a month for a weekend and we came to her and once a fortnight we took her out for lunch and a walk around the shops or to the park or garden centre. We’re a unit of three, a very small family – there are no further relatives – and Christmases and birthdays have always been spent together.

Since March last year my mother, currently dying, has been able to see my sister only once, when my sister had a seizure out of the blue and we were both able to visit her briefly in hospital. Since then my sister’s had two further fits and I saw her very briefly before Christmas, my mother by that time in hospital, where we both cried a little and I held her hand (illegally, no one else was in the large hall set aside for full PPE visits) and sang Beatles songs with her and told her we would all be together and we would see her soon. Leaving caused us both enormous distress. I speak to her now very regularly on the phone. She listens, she’s more or less non verbal. I tell her my mother is very ill but that we both love her very much and want to see her. I dread having to communicate my mother’s death to her without being able to hold her and re-assure her that not everyone has left.

When we are well and non-disabled – and autonomous in our choices – the lack of a visit and interaction may cause some sadness, when we’re very ill and disabled and dependent the lack of a visit may cause us to lose all sense of self, reality and hope.

My mother isolated diligently for most of last year, losing all connections with groups and activities which at 92 are so important, her role interaction source was me and she really struggled with the ostracisation of lockdown. A bright and fairly independent woman who still drove and scoured the papers and news channels everyday to try to get a handle – as we all have – on what this pandemic is, and what it means.

On December 4th I found her on the floor, she’d had a fall and broken her hip and was taken to Hastings hospital 20 miles away. I saw her into the ambulance and told her I’d be following right behind. I wasn’t of course because I wasn’t allowed to come to the hospital and now, two months later, I’ve finally had a ‘one off’ visit to the nursing home where she’s now very frail , confused and in decline. Surviving C19, which she contracted in hospital, feels to her I think, an empty victory.

Throughout these past two months I’ve battled to get mobile phones in to her, to find anyone who can assist her to use them (her fingers are arthritic and she struggles with technology) and I’ve listened as she she’s despaired more and more on our fleeting calls where she’s cried ‘I just want to see you? Why can’t I see you?‘ and I’ve tried to keep spirits up and urged her to eat and get stronger and keep healing and pushing onwards but sadly I think her heart’s now broken as much as her body and currently she doesn’t want to talk, just to sleep and to be left alone.

This is a snapshot of what’s happening out there.

Talking to care professionals its clear that the pain and suffering inflicted due to separation is causing people extraordinary damage. The manager of the home my mother is now in told me that recent admissions she’s received of elderly people from hospital, all of whom were previously fitter people who she would expect to recover well, now come to her home with severe mental health issues, confusion and depression. She told me that she’s been very shocked by the impact of isolation and the after effects of being on Covid wards in hospitals. Talking to my mother’s new GP (assigned by the nursing home) he told me that the hardest part of his no doubt extremely challenging job is dealing with the repercussions of isolation and loneliness. He said it breaks his heart and he choked up a bit on the phone when he said it. Very unusual, for a doctor.

I’d like, for everyone with loved ones in hospital and residential care and nursing homes and particularly for those people themselves, for their welfare entire to be prioritised. We are not just our bodies or our conditions. Health is rooted in communication and links with family and in an anchor in a world beyond illness and incapacity. I’d like to suggest that every hospital and care home has a fully resourced post holder who can support interactions properly and fully with families and friends. I’d like the homes and hospitals to be supported to facilitate these visits, for insurance issues to be dealt with at governmental level and for all barriers to visiting by family members removed immediately.

I believe the current situation is actively removing love from people’s lives, incarcerating people in care settings and killing those we are seeking to protect.

This isn’t just an interval

 

Theatres across the UK have been closed due to the C-19 lockdown.  Performances require the assembly of groups of people and the rehearsal of theatre requires close proximity. All touring work has stopped dead. Drama school graduation shows have been cancelled. Some venue staff have been furloughed and some freelance creatives (the lifeblood of theatre) have received support from Rishi Sunaks Self-employment relief fund. Arts Council England has been swift and effective in supporting companies and individuals with emergency funding but still many creatives have no income whatsoever. Nuffield Southampton has closed; Birmingham Hippodrome has made redundancies and more than a few regional theatres teeter on the brink of collapse. The Young Vic has already used up half of its reserves. The National Theatre warns of imminent catastrophe. Theatres of all scales can’t bank on producing Christmas shows, most of which accrue 50% of annual income in the eight-week festive period. The impact of swingeing cuts in government and local subsidy over the past five years has led to an increased reliance for survival on ticket sales, which stand currently at zero.

This isn’t just an interval, it’s the final curtain because whatever happens next both micro and macro-economics dictate that ‘business as usual’- a picking up of the action in the second half after a hiatus- is impossible.  Theatre as it was pre C-19 is gone.

And do we want a continuation of that first half anyway? Or can a revolutionised second half take us to a better place? A stronger show?

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Prior to the crisis many theatres in the subsidised sector struggled to marry a healthy bottom line with a commitment to the fullest representation of humanity on stage. Studio and identity specific silo-ing of BAME, disability and LGBTQ+ focused work meant general audiences could have been deprived of seeing high quality diverse theatre.  Main house programmes- in spite of diverse casting choices and disability specific initiatives such as Ramps On The Moon– perhaps leant into the bias of main house audiences, reinforcing the lived experience of affluent people who could afford high ticket prices. The classical canon may be re-interpreted to include diverse experiences, but the voices and stories and lives entire from those communities were not as well integrated into main house programming as they could have been.

Indicatively in recent years work featuring actors with learning disabilities – my area of specialism with Separate Doors – found itself labelled ‘community-focused’ and moved into the smaller spaces or became ‘event theatre’-  where once actors with Down’s Syndrome and other neuro-divergences worked  alongside other actors in the headline programme.

Pre the C-19 interval there was too often one show in the main house, for those able to afford the ticket price, and one in the community centre – for everyone else.

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People have died and suffered immensely in this pandemic and continue to do so. The function of theatre and story is to make meaning, entertain and inform and it will be needed to both make sense of – and divert from – so much loss and hardship in the years ahead. It must, more than ever before, be relevant to all people emotionally and economically distressed.

Today statues of slave traders, racists and colonialists are being torn down and offensive TV comedy is being removed from view. Never before have we had the ability to witness the prejudice and verbal violence of previous generations on an endless digital loop. Theatre- with the exception of the classics- always reinvents and speaks to new generations, new thought, new debate and new world views. This is our strength and our possibility.

Theatre is now and happens live; my hope is that it re-imagines itself, ignited by a deeper commitment to diverse voices and stories.

You

you

In the middle of the Coronavirus story that has no end – this is a story which does have an end, and a beginning and a middle…No spoilers…Enjoy this story, this twenty odd minutes off worrying about the story we’re in – a story with no end…And take care.

George Costigan introducing ‘You’

george and johnny

Listen to to the final story in this first phase of the Separate Doors audio story appeal, a thrilling read by Johnny Vivash introduced by the wonderful George Costigan.

News and bigger stories are coming soon from Separate Doors featuring stories and performances from leading learning disabled actors from across the UK.

Available for a limited time do listen to all of the tales in this first phase of the work and, if you feel you can, donate using the button below.

Click below to listen to ‘You’…

A Nonentity

In these physically restricted times the power of the imagination to transport us is more potent than ever. The significance of storytelling and the spoken word is intensified now.

Susannah Harker introducing ‘A Nonentity’

susie and jennifer
Susannah Harker introduces ‘A Nonentity’ read by Jennifer Hennessy

 

Have a listen to the next – and penultimate – story in this phase of the Separate Doors shorts appeal by clicking the link below and, if you feel you can, please donate to keep the stories of people with learning disabilities in front of general audiences.

 

Statement

My two favourite dictionary definitions of the word ‘story’ are – ‘A recital of events that have or are alleged to have happened/a series of events that are or might be related’ and – ‘A euphemism for a lie’.

Currently I watch the news as a game, spot the ‘euphemism for a lie’…

Bryony Lavery introducing ‘Statement’

Listen to his next story in support of Separate Doors by clicking the link below, donate if you feel you can- by no means obligatory!

Separate Doors · Statement, read by Margaret Fraser, additional voice Catriona McFarlane, introduced by Bryony Lavery

Blonde

A great story can lift us right out of life to another place, a different world, a memory, a dream, a wish – and – in the end, we are all the stories we told and all the stories we lived.

Jane Slavin introducing ‘Blonde’

Jane and Jenny

Jane Slavin introduces ‘Blonde’ read by Jenny Funnell.

Listen to this next story in support of Separate Doors by clicking the link below – and please donate if you feel you’d like to – and feel you can.

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Out Here

Storytelling is how we make sense of our world and how we recognise our common humanity, that we’re not alone. Usually, in theatre, we bring people together into a shared space but at the moment we can’t do that – but we still have the stories – and we can still share them.

Mike Kenny introducing ‘Out Here’

Mike Kennny introduces ‘Out Here’ read by Geoff Cantor

Listen to this next story in support of Separate Doors by clicking the link below.

The Lagoon

In a world where so little makes sense at the moment, stories can help us make some sort of sense, of something, for now. I love nothing more than hearing a story and going ‘oh that happened to me’ or ‘that happened to my mum.’ Stories help us through the hardest of times.’

Jonathan Harvey introducing ‘The Lagoon.’
Jonathan Harvey introduces ‘The Lagoon’ read by Sara Markland.

Listen to the next short story in support of Separate Doors here…

 

All that’s left is the story.

Coronavirus has shut the theatres.

Playwrights, actors and audiences can’t risk breathing the same air.

For today wild optimism, the concept of the pandemic being an ‘interval’ and a focus on digital revivals keeps many theatre makers sane but tomorrow has never been more unpredictable; values in the face of global economic collapse will adjust and theatre will likely never be as it was, as it has been, as we have known it because the audience will be much changed – and may not be there at all for a very long time, if ever.

For the first time since Oliver Cromwell no theatres are open in Britain, housing dramatic voices of dissent and challenge. New TV production has also been halted. Finding a different and engaging way to fulfil the role that new plays and drama provide in the national psyche and debate will be a challenge for all playwrights in the months and years ahead.

For now, all we have is the words.

The root of theatre is story – and stories are what writers can give.

I’m offering some new stories I’ve written below, in audio format, introduced by playwrights, directors and actors in support of Separate Doors, the company I lead which focuses on the lives and theatre work of people and actors with learning disabilities.

Please listen and if you feel you can donate then search the Just Giving site for Separate Doors or donate via the PayPal button below- but don’t feel obliged in any way.

Words and imagination are free.

As Timberlake Wertenbaker says in her introduction to the first story I’m uploading below…

“In these dark and frightening times, the telling of stories is more important than ever. It is through narration that we try to make sense of the chaos around us, that we select what matters and that we even find a thread of hope, not necessarily because the story ends well but because it allows us to understand ourselves, to see our habits and perhaps even to change the patterns of our thoughts and our emotions, in other words to make new stories- what could be more hopeful than that? The story that follows couldn’t come at more opportune time, you will see why, I won’t wish you happy listening but attentive listening, yes”.

Timb and heath
A Significant Change in The Weather, introduced by Timberlake Wertenbaker and read by Heather Dutton

THE MOST VULNERABLE: People with learning disabilities in residential care during the Coronavirus pandemic.

“Corona virus may force doctors into deciding who lives or dies.”

New York Times

 

“We are making difficult choices.”

Italian Doctor.

 

“Many loved ones will die.”

Boris Johnson

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The plan this weekend had been to visit my sister Fiona, a 55-year-old woman with Downs Syndrome, at her residential care home in Kent.  These visits have taken place once or twice a month for the past 35 years and the format I undertake with my 91-year-old mother is a well-oiled routine, a sequence of familiar actions punctuated by stress relieving rows. A standard Sunday pick up – these days – shapes up thus; I drive us both through winding B roads, bickering with ascending intensity until muted by Elaine Paige’s romp through the musicals on Radio 2. Wine gums are chewed, pedestrians along the route doing out of the ordinary things are remarked upon, houses for sale are noted, houses desired smiled at, driving choices criticised and news bulletins tuned into on the hour. Eventually, with loosened fillings and raised blood pressure, we swoop down a twisting lane which opens out into a stunningly beautiful valley, a garden of England picture postcard arrangement of oaks and dirty sheep and rhododendrons and we arrive. The care home has 70 plus residents with severe learning disabilities, living in groups of between 6 and 8, in an assortment of 1970’s chalet style bungalows, most named after a bird and a couple named after trees- perhaps after all the accessible bird names had been used up, the kind of distracting rumination I’ll use to diffuse the inevitable pre doorbell argument and in we go.  Over the three decades that Fiona’s been resident in the house there have been countless carers on the staff, some brilliant and some appalling, a couple of eye wateringly successful thieves who helped themselves to residents’ money and belongings but in the main hard working, poorly paid and undertrained people who want to do the right thing. Fiona is found either in the living room or conservatory, she grunts an acknowledgement, her cheek is offered and kisses given, fellow residents either ignore or ferociously engage me in conversation and after some encouragement we all make our way into her bedroom. Medication is signed for and I pack her bag while my mother converses with a carer, enquiring after activities undertaken, pottery, trips to the pub, her weekly attendance at a group in a neighbouring town and whether Fiona needs anything to be purchased. Invariably there is something required and this younger sister groans at the idea of wandering around Matalan resulting in another row as we leave the house. However, Fiona gets to spend time with Mum and for both of them this is precious and for me it’s precious too in a slightly different way because in between the rows and the reluctance love exists and there’s always a hollow feeling on the return journey and on leaving her again. It’s painful and it takes trust, which walks hand in hand with its darker companion – fear.

Aughton-care-home

 

Last Wednesday, which already seems an epoch ago in terms of the coronavirus crisis, it had become clear that the elderly and those with pre-existing health conditions and, like my sister, with severe disabilities, were most vulnerable to infection. I had a cold and knew that both my sister and my mother needed to be protected from my germs but, more crucially I was concerned about my sister becoming ill while at home with us both. She’d be unlikely to co-operate with medical intervention, could deteriorate very quickly and then wouldn’t be able to return to her care home. Although my mother is a robust and pretty healthy 91-year-old I was aware that the ‘risk’ box in this particular swat analysis – headlined the pros and cons of Fiona coming home for a weekend – screamed in a bold red font.

I emailed the care manager and suggested that we postpone our planned trip this weekend, that Fiona stay where she is and that we would re-arrange at a later point. I asked if perhaps we could Skype or What’s App video call so that vital contact can be maintained.  Fiona’s limited communication and speech means that without contact and re-assurance she can quickly fall into a very lonely and lost place. Her understanding exceeds her ability to express but how could she possibly understand that her mother and sister have just disappeared? Except to imagine the worst, she has like all of us experienced death and deep grief but to go through that due to a lack of contact is a horrific thought. The reply to my email came quickly, I’d pre-empted the home’s plans to lockdown which it then proceeded to do and we were assured that Fiona’s safety was a priority.

home

The concern for Fiona and her fellow residents is twofold. One is of direct infection with Covid-19 and the other is the fallout from staff sickness. The doors have shut to the outside world in terms of family visits but care staff are people too and it’s likely that at some point the virus will enter this enclosed population. In common with many people with Downs Syndrome Fiona has always struggled with colds, with breathing and the Coronavirus might affect her very badly. She needs twenty-four-hour care, help to dress, eat, wash, go to the toilet and make choices. In an emergency situation, if staff numbers fall drastically and residents are also ill then what happens? What choices are made and by whom? Has all contact with the outside world and all activities stopped for all residents and what’s the effect of that? Do doctors come into the home? Do residents go into hospital? Are we freeing up ICU beds in order to treat people with severe learning disabilities?

I don’t want to ask those questions because I fear the answers.

care h

Reports over recent days suggest care homes being given ‘emergency’ powers to make decisions for their residents, in camera. Where once there was scrutiny and transparency with regard to the care of the most vulnerable members of society now the drawbridges have come up and the curtains have been firmly closed, so how do we trust the right decisions to be made?

I’ve written about the Nazi holocaust of people with disabilities in my play Hypothermia and find the parallels in language and inaction of that de-sensitising process with our current crisis chilling.

What we can do…

Individual and collective action may help.

I’m formulating a letter and mechanism which means all relatives attached to residents at my sister’s care home have at least the means to communicate with and see their loved ones via the internet and suggest that this is rolled out wherever it’s helpful – even if it’s just using someone’s mobile to make a What’s App call to the outside world, it will make all the difference to my sister and may well do to others.

We need to make people aware of what’s going on in residential care homes, that there are whole communities which are being cut off and finding digital ways to reach these people. My Separate Doors project has involved face to face contact but it can work just as well virtually, providing people with learning disabilities with a means to meet and connect and I  hope Arts Council England will support this work in this way moving forwards, its so needed.

With whatever democratic tools are left and to hand we need to make sure the right to life of people in care homes is articulated and upheld and we must keep the voices of the voiceless heard.

I don’t know when or if I’ll see my sister again.

Right now, a bad-tempered drive through the Kent countryside with a grumpy mother, followed by a reluctant shopping trip with a sister in tow,  would be absolutely wonderful.

 

hallway