I have been developing an extension of Care Full to take this research about carers on the road, quite literally. As ICC closes, this work will seek to make contact with the many 'hidden carers' of Islington and attempt to speak of both the personal and political difficulties of the many people who struggle to care for their loved ones, often without acknowledgement, enough money or time. The paid proposal process with AIR and Pete Courtie from Islington Council has been enormously rewarding, with their criticism and encouragement enabling me to take the initial seeds of an idea into what is hopefully now an ambitious but realisable project that will culminate at the start of next year. I have been keeping in touch with all the people I met at ICC last year and now intend to re-connect with them and also start to broaden the base of the work to reach more people across the care sector. In-Kind begins
Having been notified formally of the success of my proposal to develop the work on 'Care Full' into 'In Kind', I arranged to meet the core groups of carers at ICC to discuss the future of our work together. A surprising number of them turned up at ICC where we had lunch and discussed ideas for Carers Week and for the In-Kind vehicle. The general consensus was that In-Kind should be military in nature and the live performance should visit David Cameron at no. 10 Downing Street and all GP Practices in the borough! It was great to see everyone and have the project met with such enthusiasm.
Rachel Anderson, who will be producing In-Kind, and I attended the Carer's UK Vintage Tea Party at Finsbury Library. This offered us the chance to meet people from the 'care scene' in Islington, including Spike Warwick who invited me to join some of her support groups and Gavin Willams who manages the Islington Carers Hub. This was also a sad day for many Islington carers as it was the closing party of ICC, which ran throughout the afternoon and into the evening.
The last ICC Relaxation Day. Paulo Mata has done an amazing job supporting everyone to accept the closure of this service and to be able to enjoy their recollections of it without fearing what's ahead. The walls of ICC are covered with images and information form the past 20 years and there is a little galley in one of the offices that includes some of the images from Care Full. They normally have some entertainment at these relaxation days but the usual guy wasn't able to do it so Florence, to her enormous credit, stepped up and ran a quiz! Best question: "which London underground station does NOT contain any of the letters in the word MACKEREL?!"
"I lost ten years looking after my mum."
Today marked the end of Carer's Week, with an information event at the Resource Centre (next to Waitrose) in Holloway Road. Having been invited to return after the success of our 'art table' last November, I set up a stall in the entrance asking people 'what did they need a hand with?' Responses were written onto latex gloves, which we then inflated and attached to Erika, whose costume grew throughout the day. All Gloved Up, she joined in the (impromptu) Tai Chi demonstration, attended a Manual Handling class and was asked to help call the raffle! Met some interesting people, both service users and providers.
"When my mum got ill my phone bill shot up by 50 quid a month."
"I have had to call an ambulance nine times in the past few weeks. It took him going into crisis for us to get some respite care."
"My old trolley got eaten by a squirrel."
Started corresponding with the press office from Carers UK to begin disseminating the work of In-Kind both within Islington and nationally.
A small group of carers met me at 1 Granary Square to look around UAL's Degree Show 2. A sweet day.
Tonight I met some 'young adult carers' - we used the AMM studio space upstairs of Windows in Junction Road. It was fascinating how less weary they seemed compared to most of the carers I've met through this project. Some nice images and conversations emerged, of wings and wheels, issues of discrimination, and the exasperation of not always wanting to explain that you are also a carer and not just a 'care-free' young person. Zebra skins to hide away or adapt to situations, sunshine torches when you need them, a head made of clouds, an alter ego of a seal and eating pomegranates with a needle. For In-Kind, they thought the vehicle should be a party limo or hummer, or a double decker with a stannah stair lift!
"I'd like not to have to explain my life all the time."
I attended a new carers 'shared reading group' today, led by Spike. She read a chapter of My Left Foot by Christy Brown which is an incredibly touching autobiographical tale, and also a poem by Walt Whitman; A Noiseless Patient Spider. I chatted briefly to the carers there, many of whom I know, about In-Kind. Spike asked the group what a mother's love is, and how do we understand 'blind faith'?
I have arranged two sessions before the summer 'break' that will involve the 'steering group' of carers from ICC as well as Erika Poole, our performer. This transition from one process to another is tricky. I don't want Erika to feel overwhelmed by what has come before, but equally it is important that she sees and hears some of the range of experiences of the people I have been working with to gain a better sense of the breadth and tone of the research. We all met at the UAL studios in Elthorne Road, cuckoos of different spaces now that ICC has closed. It took us a while to get used to this new space and some of the group are experiencing a lot of difficulties at present. We ate together, reviewed the videos from Care Full and tried out an exercise to reflect upon a moment when we learnt something about ourselves through the act of caring. Florence had bought some bread from Yildiz's and Erika commented that it was like a pillow, so a bread bed is proposed for next week. Interestingly, at the carers open day in June someone said that "carers are like pillows", a curious and problematic analogy. Today we also discussed care as power, issues of belonging, martyrdom, the image of the warrior v the worrier and the importance of props and pills (as well as pills as props).
"I have become lessened."
"A parent becomes a carer when other people start sticking their noses in."
"It's all fallen on me."
"I have considered killing myself but I'd have to take my children with me as who else would look after them?"
Quick meeting with the production-commissioning team to review where we've got to. Questions of parking, access, audience, publicity, safety.
A playful, if hot, afternoon back at the Elthorne Road Studios. We bounced around ideas for the vehicle and the performance - stained glass windows, a hatch, darkness, using the roof - and tried out two ideas: the bed-bread and the Warrior-Worrier. Erika brought in some Sudocrem as war-paint, which smelt so evocative. We tried distributing pills whilst wearing boxing gloves. The bed was a landscape of restlessness, its occupant never able to truly relax, sleep broken and fractious. Nights full of crumbs.
"Pillows and crumbs."
"I hate the night-time."
"To hold myself together is really hard."
Attended the Young Adult Carer group for the second time. Only one person there tonight, she was new to the group as, in turning 17, she was now no longer able to be with the Family Action young carers. A quiet evening but with some interesting reflections on what it means to carry the burden of care in a family - why does it fall on some, and not others? And also how do you follow your own needs, e.g. go to college, when you feel responsible for those you leave at home?
"From the moment I wake up I have to think about the needs of someone else."
There once was a girl called Tracey,
Who decided to care no more,
And then one day she changed her mind
and realised it was time for her to take control of her own life,
and finally that is what she did
Jill has invited us to join a session with two carer groups tomorrow, which is great as it will involve some of the people I already know and quite a few new. This next phase of In Kind feels rather daunting as decisions need to be made and a schedule put firmly in place to make sure we are ready to go into production in January. I am musing on the idea of our performer learning to play the saw, and wondering if her tea tray might also act as a skateboard.
Friday the 13th. Had a really good and eventful day, despite the incessant rain! Sandra, the manager of the MIND building in Ashley Road, had made some amazing curries and 11 carers attended the event. Rachel and I set up an outline of a vehicle on the floor and began the task of asking people to envision how the van might carry their thoughts, experiences and ideas (both fanciful and all too real). The response was good - images of people being at war, a relentless struggle, lots of use of the word 'shit', but also dancing in your head and a discussion about forgiveness - and we have agreed to run a similar session closer to xmas with the actual van on site, which we can use in variety of ways, maybe to make Carer-Crackers, with a small gift, a martyr's hat, a visceral joke and a very loud bang!
"Loving is hard when it gets distorted."
"Some days I can barely put my head out the front door."
"Caring feels like waking up and thinking you're still in a bad dream, and you want to go back to sleep to get away from it all."
"Caring is a never-ending story."
"I feel like screaming HELP!"
"I find pleasure and respite in dancing and cross words."
"Caring has no smell, no fragrance, it's dead."
"Caring smells rotten. Acrid. It smells of shit, disinfectant, mouldy food."
"Ahead of me I only see more stress, more worry, more despair. There is only an occasional glimmer of hope."
Production meeting with AIR to review the R&D research and to plan the next phase of work. I have been invited to talk about this project at a symposium at the Royal Holloway, University of London, in November and have been given a slot called Labour and Laboriousness - it could be an interesting interim point to open up the work to a different, critical audience and to reflect on what has been learnt so far. Seems odd to realise that this all started exactly a year ago with Care Full at ICC.
Jill Keegan, from MIND, is helping to set me up with some one-to-one meetings with carers in their own homes, which is incredibly useful and generous. I am realising how very intimate our performance will be in the van and am wondering how to best work with this.
Another production meeting to resolve some of our aims in terms of audience and accessibility. Pete Courtie, the commissioner from Islington Council is also sorting out our parking permits so we will be able to park outside carers homes in the new year. We are getting close to sealing the deal on an old military ambulance we found on ebay, belonging to a man called Duncan. In his emails he has a by-line, written large and in purple, that says 'It's impossible' said pride, 'it's risky' said experience, 'it's pointless' said reason, 'give it a try' said the heart!
Rachel and I made an unplanned trip to Bristol to see the ambulance, talk to the mechanic and finalise the payment. Surrounded by green fields on a sunny day it's hard to imagine this same vehicle parked up outside people's homes in London in January. What's great is that it is not too large to manoeuvre, and has all the integrity of it's original function. But what now fills me with anxiety is how tight the work will need to be - there's nowhere to hide.
Meeting Erika tonight, to catch up with her before she goes off trekking in the mountains of Ethiopia. When not working as an actor she is an agency carer and had to dash off at 8pm to assist a man, for the first time, who had just left hospital after an operation.
Joined the shared reading group this morning, with the Wide Sargasso Sea as our text. It brought up lots of discussion about class, colour and care (or lack of it). One of the group, who I have known now for over a year, also offered to read out-loud despite not having done this since she left school some 40 years ago. A touching moment.
Attended a forum with the Young Adult Carers tonight to discuss their needs and what they gain from being a group. Mostly they want adventures and a chance to get away from their care roles, many of whom look after their mothers and by extension their whole families. The withdrawal of any council funds for this group has had a huge impact and it is appearing timely that In-Kind is on offer as something they can contribute to and be part of. They talked about people emerging from the 'party ambulance' in a cloud of smoke, as if their experience of the work had changed them somehow. One of the group, a student, also talked about making an 'oral history of carers' and I am thinking about a way in which his research could become part of this work.
It occurred to me today that some of the core group of carers involved in this project are in a considerably worse place than they were a year ago. More physical and mental deterioration (both their own or those they care for), law suits, financial insecurity, increased worries about the future. It's a sorry fact to reflect on.
Waiting to hear if the ambulance made it through its MOT before we can collect it from Bristol.
Went to see Mike Kelley's film, Mobile Homestead,a cinematic journey of his suburban family home on wheels featuring interviews with the people from his childhood neighbourhood. Kelley: "One always has to hide ones true desires and beliefs behind a facade of socially acceptable lies." A poignant piece of work, revealing so much depravation and stoicism but also uncomfortable knowing he killed himself before it was finished.
Today rehearsals began. We collated the research to date, shared by carers over the past year, and tried out a few ideas with some old and new props, developed from, and since, Care Full.
Rehearsals, day two. This was an intense and emotional day, concerned with loss, grief, and virtue. In the evening I went to a scratch narrative performance experiment called The Unbuilt Room - thinking about how to create an imagined physical space without leaving your chair.
Rehearsal, day three. A fun day with beards, clothes pegs and balloons!
Erika and I went to experience Adrian Howell's UNBURDEN scratch performance work at Battersea Arts Centre. This was a one-to-one, very intimate experience that established a gentle dynamic between performer and participant. Our aim was to share thoughts on what it feels like to be on the 'receiving' side of this kind of work: what helps to put you at ease, what are you left with etc?
The ambulance has arrived! Rachel drove it to London solo yesterday, a stalwart and fantastic effort. It's a beautiful green beast that looks brilliantly incongruous parked on a residential Islington street. Today we had a cup of tea in the van, discovered how much it moves when you are inside and tested getting on the roof!
Spent the day sourcing materials, props and consolidating ideas.
Met with Spike and the Young Adult Carer group tonight. We tested ideas for Fridays Carers Rights event, ate fish and chips together, and Andrew F also introduced the oral history of carers research he is going to undertake.
Rehearsals today with Erika, we focussed on guilt - what it looks like, how you wear it and what you do with it.
"I didn't ask for this. I didn't order it. It just sort of arrived."
What does it mean to be told "you are such a brick"?
We spent some more time in the van and prepared for tomorrow.
We drove to the Resource Centre for London for the Carer's Rights event. Driving the ambulance around London is hilarious - everyone gives you a really wide berth! Erika set herself up in the van, and received wish boxes throughout the morning which had been filled by carers we met in the workshop upstairs. I met a woman who took part in an activity last time we were there and she said that it had really helped her to calm down after what had been a hellish few weeks with her mother's sudden health deterioration. We also met some interesting new people; a woman whose husband had just had a stroke and who she was now having to care for, and a woman who helps carers get work through a job centre programme. Andrew F also recruited a good range of carers to take part in his oral history research.
We moved the ambulance today to a new venue, better set up for rehearsals and storage. We also gave the interior a good, and much needed scrub!
More rehearsals and a test audience experience with one the carers who took part in Care Full.
Tried out some material we are unsure about today. The rehearsal space is freezing, the roof leaks and by 3.30pm it's really dark, so getting a full days work done is hard. Met with the Young Adult Carer group in the evening, went ten-pin bowling. Lovely to see them and they are keen to see In-Kind in the new year.
Erika had a tutorial from a musician today whilst I met Rachel to discuss the performance schedule. The flyers should be available soon and booking can begin. Tried out a second version of the performance and are now deliberating on whether there will be a variety of options for each visitor.
Angela, a carer who has been involved in the project since September 2012 came along as a test audience member, with her friend Sue. We showed them the two versions we have developed and their feedback was really useful. Karl also did a test run of video recording to see what kind of lenses and angles we can get in such a small space.
Marcelo came and looked at the ambulance to discuss the modifications we want. He will start doing the install work at the beginning of January so that we can finalise the performance with everything set up.
Day working on the van and met with a lighting designer. Also swung by Spike's shared reading group to give out the hot-off-the-press flyers. One carer said she felt really moved and another how proud she was to see the leaflet and to have the work recognised in that way.
A really good day, although working in the wet and cold is starting to take it's toll on us physically. Think we have nearly resolved the performance, and tested it out with a 'mystery guest' whose responses were really useful: she said it was a "harrowing but beautiful piece". Time to focus on the after-care of people once they've experienced In-Kind.
I also swung by a carers group in Hornsey who expressed anxiety about attending a performance. With the help of Kirsty, their group co-ordinator, we are going to see if we can set up a morning where some of this group can access the work without feeling stressed by the commitment when they have so many other demands on their lives.
"The ambulance operates as that place you have to go to when your life swerves into a care role, but then becomes a place you try to forget when you are not in it. It is about home, about health, but is also a non-place."
Tested some of the new props and kit with Erika. A few more things still need to be sorted.
A day reflecting on what we've done and where we are going. Just came across some quotes from carers I had forgotten that I thought might be useful to re-visit here in the light of our impending performances:
"I have become lessened."
"Caring is like an act of translation."
"This is another place I lie alone."
"I should be able to do more than just sit there after all this time."
"Caring is a violent thing. It's what it does to you that is violent."
We tested out doing four consecutive performances today, to key players from this project. Some useful feedback. Jes Fernie emailed the following day to say "It's still sitting on my shoulder, nudging me, disturbing me, making me laugh".
Meeting two carer groups today at Mind in Ashley Road. Also hoping to move the ambulance out of it's lock-up into the big wide world!
Tonight we went public for the first time, with the Young Adult Carer group hosted by Mind and Carers UK. Took a photo of the ambulance mid-performance in the car-park off Wedmore Street. Unfortunately it is looking unlikely that our canary will make an appearance in the performance - Cream Egg, as he is now known on account of his colour, has not been too well and Erika cannot bear the idea of distressing him any further! So, a fake Cream Egg will have to do.
"In-Kind is not a day in the life of, it's a life in the day of a carer."
The Russian Dolls have arrived, exquisitely drawn by artist Talya Baldwin, after our conversations about the toll takes on a carer and the tension between the roles of service and sainthood.
Performances at Islington Mind for carers who have been involved with the process over the last year and a half.
"The sound of the saw took me back to when my son was psychotic and it felt like a howling in my ribcage. It's taken my breath away to see my life in front of me like that."
"It reminded me of the times I have screamed out into the street, literally, when I've been that desperate."
Performances at Mind again, with a visit from Paulo Mata who agreed to host the beginnings of this work at the Islington Carers Centre back in July 2012. With the incessant rain, we have also had a slight leak from the roof, which Rachel promptly dealt with by hopping up on the roof with some tape and bin bags - emergency measures indeed!
"It felt like all your hurts and wounds were coming out in that saw."
"I could have stayed in there for ages."
"It made me feel a bit funny. Kind of shivery. The balloons were like eggshells."
"I really related to the punching - I could have done that this morning!"
"I didn't expect to get anything from it but I did. It's really made me think. It's really poignant."
Lennox Street. A blustery day in Finsbury Park, with a lot of good will from local people and free coffees from Taste of Italy. Five people came to see In-Kind:
"It was epic. Full of detail. So gentle and detailed, yet you could feel the aggression at the seams."
Hargrave Road. A local carer came to say hello after spotting the van on her street!
"A whole life in a room parked at the end of Hargrave Road. Have to admit I laughed quite a bit at first, but was left silent by the balloons."
"In-Kind has a great significance for me and touches my life deeply."
"This [subject] concerns us all, but is kept hidden; swept away - hoovered away - we don't like to look at it or contemplate (understandably) mortality and responsibility."
Highbury Place. Evening performances amidst the throngs of the Arsenal crowds, helicopters circling and the wind buffeting the van.
"Thank you for the courage to have made this."
"This is a real achievement. It's extraordinary."
Islington Town Hall, a day for council staff.
"You can't get it until you've been in it."
Islington Town Hall. Performances amidst an almighty blizzard with elaborately decorated brides carrying bouquets with valentine's hearts on sticks. It was incredibly dark and wet. One man shouted at us that he was there to register the birth and the death of his child. Erika sobbed and sobbed, with exhaustion and the tenderness of one of her audience. I took lots of photos to try and capture this peculiar soggy angry day, only to discover there was no memory card in my camera - argh!
New Park Road, an audience with professional and informal carers from an elderly day centre, run by a lovely man called Lloyd. A sweet morning with plenty of cups of tea and biscuits, a serenade on the street from Dave-Elvis (in blue suede shoes) and some very welcome sunshine!
"I wasn't sure if I should give her the pills, in case she did something bad with them."
A return to Highbury Place, this time without the circling helicopters and football crowds. An interesting mix of audience responses:
"Erika's performance is staggering. So much detail."
"It's sweet and touching but also quite funny!"
"In-Kind is like the curious love child of Andrea Arnold and Matthew Barney."
"To Sarah and the wonderful In-Kind team, who felt that highlighting the challenges that face Carers was something important and worthwhile, my heartfelt thanks and appreciation."
A performance for Jeremy Corbyn, MP, in Durham Road. He has tweeted his response: Well done on superb 25min solo on carers lives, in the back of an ex army ambulance. Thought provoking and evocative. Thanks!
We also went to Japan Crescent, Finsbury Park, to perform for a writer and a photographer who we have asked to view and translate the work for us.
Giesbach Road. Nice to be back in Archway. Lots of curiosity from local people, some good conversations, including meeting 'Mummy Kerry' who adopts military service men and women as a pen-pal and remote 'friend'. It was the van that drew her to us, but what emerged as we talked was the differences in what we each perceived as a 'hero'.
Arsenal Football Stadium. Invited to perform for informal carers undertaking a course to professionalise their skills. Their tutor had seen In-Kind last week and has been incredibly enthusiastic about how this work might stimulate conversations about, and validate the experience of, being a carer. Also fun to drive the ambulance up the ramps into the stadium!
Sussex Way, N19. We met carers at the Libertea cafe today, all of whom have been involved in this project for some time. Also met the Director of the Crouch Hill Festival who invited us to take part in the event in June. Gloriously sunny, though rather noisy with tree surgeons and school children surrounding us all morning!
"That was me this morning."
Colebrooke Row, for two performances for staff from the Islington Clinical Commissioning Group. After that we went back to Wedmore Street by invitation. A staff member from Mind was the first person to mention that she recognised the soundtrack used in the show. We were also amused to park outside a pub called The Good Intent (that harboured a very large loud aggressive dog!).
"It's a rare situation to find yourself in such close proximity to someone with no demands made on you, and to be allowed the observe them so intimately."
Our last public performances, at Granary Square, outside the Central Saint Martins building. A nice ending as this was where I first asked Erika if she would be our performer nearly a year ago. A less nice ending was the weather, which was freezing and very wet indeed! This was also the first occasion when an audience member failed to turn up, which is probably not bad going having now done 16 days on the road, with 88 performances in total. The hi-light of the day was pressing a 'custard pie' into Erika's face during the last performance, something she had expressed fear of every time she stuck her head out of the 'cat-flap' - great hilarity ensued whilst she tried to continue her work with squirty cream all over her face!
"What I really liked was the way it set up visual metaphors, almost like a game, with enough space around it for you to use your imagination."
"It made me think of my dad, who has dementia, and how difficult it can be to do the simplest things sometimes."
"I don't usually like one-to-one performances as they often make you do or give something. It can feel really uncomfortable. Whereas this was just a pleasure to be part of."
"I found it raw and honest, but also very touching."
Lunch at Lift in White Lion Street today, for people who have been part of Care Full and In-Kind over the past two years. A lovely afternoon catching up with everyone, and discussing some ideas about where to screen the video once it's been edited. By email I was sent this beautiful feedback:
"You've changed the lives of all the Carers who participated in your projects, challenging us all in areas that we'd never have experienced had it not been for you, your creativity, passion and motivation. Thankyou for such a joyous and fulfilling time and for doing so much to highlight the role of Carers in our society."
These last few weeks have involved collating the documentation of In-Kind. There will be a book publication about the whole of A Million Minutes and hopefully a video of In-Kind to be screened at a public location later in the year. As to whether the ambulance will go on another jaunt across the country, time will tell.
Erika Poole: Performer
Rachel Anderson: Producer
Jill Keegan: Mind, project consultant
Marcelo Sanchez-Camus: Technician and Fabricator
Adam Carree and Katie Mountain: Lighting Design and Installation
Florence Dent: Trainee Artist
Talya Baldwin: Illustrator, Russian Dolls
Tas Kyprianou: Photography
Karl Cresser: Video
marc&anna: Publicity Design
SPECIAL THANKS TO:
Spike Warwick: Carers UK
Paulo Mata: Islington Carers Centre
Peter Nevins: Mind
Sandra Adjei-Wilson: Mind
and THE CARERS:
Anna, Angela F, Angela, Andrew, Bernadette, Bobby, Colleen, Jasmine, Kathleen, Linda, Lindy, Lisa, Marion, Mary, Nutan, Pauline G, Pauline J, Phoebe, Purlene, Rachel, Sheila C, Sheila S, Stephen, Tatyana, teresa, Teresa F, Tina and Wanda.