A Manifesto of Care
“high time we made a stand and shook up the view of the common man”
From “Sowing the Seeds of Love” by Tears for Fears
CARE:definition:
Noun:
the provision of what is necessary for the health, welfare, maintenance and protection of someone or something
Serious attention or consideration applied to doing something correctly or to avoid damage or risk
Verb:
Feel concern or interest, attach importance to something
Look after and provide for the needs of.
A short while ago, the architect Peter Culley told me about one of his projects in which he transformed an enormous and decrepit old Sears building in Memphis into a beautiful multipurpose space for the community. The Sears building had been a shop and a distribution centre, but had been closed for years, mouldering and neglected, as it would have cost millions of dollars to tear it down, money that the city could not spare. Instead of destroying it and starting again, they looked at what they had (the beauty in the decay, and the light in the water of rivers running through a place where rivers have no right to be) and honoured the good that was there and built on and around it, keeping the best.
Perhaps we could do that with our systems of care, I thought.
(Perhaps we could do that with everything, I thought. Keep the best, build around it.)
I had been thinking about care for some time. I thought about how I, in common with all other human beings, have spent years caring and being cared for, in one way and another. Like that one time when I sat on my Nana’s lap, quietly, and she read me a story to help me to sleep because I was scared. Or that time when once in the street, in the winter, walking to the doctors, my asthma was so bad, I had to ask for a stranger’s help... and that person sat with me till my breath came back and I could go on. Or that time when I just sat and massaged my friends hands because she was dying and too tired to talk and that was the best we could do and it that seemed OK.
I have also been the recipient of and been a witness to a care system, that for various and complex reasons, is not always as good as it could be.
So I set out to ask people what they thought we might need to make it better, easier, kinder, for carers and cared for both.
This manifesto is a collection of the ideas I collected and the conversations I had. It’s about how we would like to be cared for and how we would like to care, what we hope for in the future and in the present from care and as carers.
It is intended as a provocation. It’s an invitation to have your own ideas and conversations, to join in, to contribute, to challenge, and by doing all of these things to help us create a better world in which care is valued and valuable.
Know this: the way things are now, the way things have been, they do not have to be , they are not immutable , not carved in stone, they are a construct and we can look and see what we have and adapt, add, subtract. We don’t have to tear everything down (or maybe we do). We can look at what we have and build it and change it to fit.
With these words which follow I hope to “incite you to evolution”, an evolution fuelled by ideas, imagination, creativity, courage, hope and action. An evolution filled with choirs, jokes, joy and stories, which keeps the best of what we already have and builds on it. With these words and ideas we can find the courage to demand change, in ourselves and from those in power.
First, here’s the story of how I found the people whose thoughts I recorded. Sometimes I have quoted them directly, and throughout their ideas and our conversations are faithfully reflected in these words.
On a rainy weekend in October 2019, during Frequency Festival, I walked the streets of Lincoln, to chat to people about care. I spoke with the strangers I met about many things including: karaoke, weddings, fashion, inappropriate jokes, storytelling, going home, songs and singing, friendship, love, single malt whiskey, the perfect cup of tea, what family is, the love of pets, hot water bottles, and fluffy bed socks. We also spoke about death, dying , illness, pain, suffering, grief, despair, anger, loneliness, neglect, isolation, being broken. We didn’t mess about. We didn’t avoid the hard stuff. We got straight to it, pretty much.
I sat with strangers on orange plastic chairs in charity shops and on velvet cushioned wooden chairs in hotel dining rooms, I sat in cosy vegan cafes and on a damp bench on the High Street, I spoke to the recently widowed, to octogenarians in rude health, and to thoughtful teenagers. I marched up and down and up and down that very aptly named Steep Hill, I admired apothecary bottles on polished shelves in antique shops whilst chatting to a nice man called Colin about a record collection that was left to him by his favourite Uncle and what that meant to him. It rained and rained and rained. I marched on. I walked the ramparts of the castle and I sat and chatted to people after they had experienced Lindsey Seers beautiful VR experience Care(less), in which they got the chance to experience what it might like to get older.
I spoke with all of these people about care, and asked what they wanted care to look, sound, feel, taste, smell like in the future and now. Later I sat and spoke with an amazing group of people about care in a café that was like an old curiosity shop. We spoke about refugees, duty, intergenerational co-habitation, driving, gratitude and the advantage of being older and having a punk attitude. In the background ( I heard it again when I played back the recording of that day’s conversation) you could hear Tears for Fears singing “Sowing the Seeds of Love” . Seemed appropriate.
Here are some of the gathered thoughts and sayings of those I met that weekend and also those whom I have loved and kept company with for the last ten years, in living rooms and community centres, in care homes and sheltered housing, in hostels and refuges, all these places I have been lucky enough to work in as an writer who works with communities.
It is in part a list of wants. It’s the words and music of a song for us to sing together, composed of thoughts, complaints, dreams, hopes, frustration, anger, memories. It’s a collage of borrowed words and pictures from half remembered daydreams, an article in an out of date magazine found in a doctor’s waiting room, and a dusty photograph album nobody’s had out for years. It’s a patchwork quilt which you can snuggle under and dream your own dreams.
I’ve organised the words in sections under headers. You might think that I’ve left some out and you may disagree with some or all of it (I hope so! Bring me your ideas too!).
After all, we can’t just simply say what we don’t like, what we don’t want, we must find the courage to say what we do like, what we do want too. We must tell each other what we each want care to be.
Let’s be architects of hope, and co-create a (radical) manifesto of care. Here’s a start.
This is a declaration of intent and an expression of desires and experiences
with recognition of our collective and united vulnerability, humanity and fragility, in celebration of all that we have in common. A Manifesto of Care.
1. We have a duty of care to ourselves and to each other, and that can be a joyful thing.
“I think it’s not a sense of responsibility that is lost, it is a sense of instinct we must learn, to re-understand what it is to want to care for somebody “ Paul
To a greater or a lesser degree, we all need care throughout all of our lives. We all needed care as infants, we still need care as adults. As adults might care for ourselves, and feel we don’t need help, and that not needing help is the aim and hope of growing up and independence. But we are all interconnected, and interdependent. We depend on each other and on the care that we each put into the role we play and the work we do. After all, someone grew the food on our plates, someone else built the house we are in, someone made our clothes, we are dependent on each other in every way.
So we can start by acknowledging that throughout our lives, we need each other, we all need care.
We also need to eat, sleep and rest, we need to learn to know the things we need to be happy and we need to try to make sure those needs are met. We need a support network so that when we are not able to care for ourselves or when we need help with something we can get it.
“It’s just knowing I can call my sister if I’m depressed and she will come and help me. That makes me feel safe, because I know she will care for me. But I think there needs to be something else, for people who don’t have that support. I think it should be normal to ask for that and get it, from your doctors or in the community” Bethan
We have to get rid of the idea that only at certain times, and only certain people (perhaps those to be pitied) need care. That suggest that those who need care are less than us and not our equals. If you need me and I don’t need you then we’ re no longer on a level with each other, eye to eye. I can look down on you.
“We can’t just see ill people as ill or old people as old or disabled people as disabled because they are other things too, you can’t just be patronising and treat people like they can’t make their own minds up, we should ask people what they want” Harry
And caring is reciprocal. When we care well, then we help the person we are caring for, and we get the satisfaction and pleasure of knowing our efforts were worthwhile. If we acknowledge in the moment that we are providing care that we too have needed care before, that we will need it again, and understand our whole lives will most probably contain illness, difficulties, vulnerabilities, and challenges too, then we can ask ourselves how we would like to be cared for when that time comes. We will work to make this possible, for now and in the future, however we are able to. Then we will be able to relax in the knowledge that we will get what we need when we need it, because we have co-created a world in which care is provided in the best way possible.
“Care is tied up with ideas of burden… and some peoples needs are somehow seen as different to our own dependencies and vulnerabilities, but they are not. We all need care, to live, to breathe, to be well, we need to be cared for and to care for people. Older people for example are no different from this, but somehow they get separated and seen as uniquely different in their care needs. Care has become commodified and it is something you purchase rather than something that is part of all of our lives. We have got to accept that for all of us, care is a fundamental need.” Annie
If we care for others and ourselves, we are accepting responsibility for and doing the work of making sure that our lives can be the best they can be, in all and any circumstances.
We will accept that care is one important thing we all have in common, it is simply something we all need to give and to receive, throughout our lives. We will accept our own and each others vulnerabilities and fragilities, and love each other too. Care is an expression of this love.
“We should care about each other, and not just each other but all living things and the earth too, if we extended the thought and concept of care everything would get better, the world could change for the better, all of it, we could literally change the world if we cared more” Maeve.
Caring can be a source of joy, purpose and satisfaction. To be the recipient of care is nothing to be ashamed about. But who should be doing the caring?
“To me there is this tension in the idea of care. As children we have a duty of care to our parents. But you ask yourself - would I change my life in order to be able to care for them? And if I don’t am I happy someone taking over a role which I think I should do?”Karl
If we are not able to care for others (and we may not be able to, for many reasons), we should value and protect those who care in our place. If we do not value those who need care, seeing them as drains on resources, then we do not value those whose job it is to care for them. They are badly paid, or not paid at all. They receive little support or respite. Let’s change that
“We need to pay the carers better and make it seem like a good, attractive thing to do. Because not everyone can be cared for by their families, but a good carer can be like a family member.We need to care for the carers so they can do their jobs better” Stan
It’s the most badly paid, disrespected professions that keep everything going: bus drivers, refuge collectors, shop workers, delivery drivers. Our carers are amongst them.
We will pay them better so they are not so rushed they can’t listen, so tired because they have to do three jobs to make ends meet, so worried they can’t focus.
We will make sure that unpaid carers too get support, respite and help. That we don’t just take for granted that someone has taken care of that and we can forget about it.
“You just need to remember to ask “are you alright? do you need any help?” I wished someone had asked me that a bit more when I was looking after mum. Just so I could have had a day off now and then” Tash
We are each responsible for each other. We need to share the costs and the work of care.
We will share the work of care of all of us, amongst all of us. We need to do this so that no one has more than they can bear, and so that everyone gets what they need.
“You are cared for and then it is your turn to care for and then you are cared for again. That’s how it goes” Adrian
2.If we’re talking about care, we do need to talk about death and dying too
“Let’s prepare for death before we get to a crisis. Education should contain a built in acknowledgement of care, death and illness, a celebration of life and people and then normalising death in the process. Like when children’s pets die, that might be their first experience of death, and it’s a chance to talk about it.” Dan
We need to start talking about aging, illness, and death, and everything that comes with those things. This doesn’t mean we have to talk about it all the time, nor does it mean that everyone will be able to or want to. But more of us do need to talk about death, so that we can be as prepared as possible, so we have as great chance as possible of a good death, so we can get the care we need and want when we are dying, so we can give good care to the dying too.
For us to be able to take care of each other at these difficult times, we would like death plans and funeral plans to be a normal, everyday and expected part of life for everyone.
We will make a start by discussing our own deaths with loved ones, gently and carefully, and encouraging them to do the same.
We can recognise that in spite of making these plans that things might not go that way. But we can share what we would like and what we wouldn’t like, and we ask others what they would like and wouldn’t like. That we can make Advance Decision (Living Wills) writing down any and all treatments we may or may not want in the future, should we be unable to make or communicate decisions ourselves.
“The death conversation can be difficult and we don’t want to dwell on loss, but we do need to talk with sensitivity about it, and remind ourselves: I am here now, and I am fine” Jackie
We will focus on the joy and beauty in it too.
Like what songs we want to be played or to be sung, where we would like our remains to be placed, poetry we might like read, who we would like to be at our funerals, what we might like to be heard or seen or said. What we would like to leave behind: a photo album, a playlist, a letter.
“There was a 3 year old at my colleagues funeral, a reminder of new life which was so good. At the mosque some young men in suits carried the coffin and then laid the earth with their bare hands, getting their hands dirty, the labour of it seemed so beautiful, the level of care they put into it” Karin
We will allow the dying to speak about their deaths, we should not silence them. We should use the proper words: dying, death so that people know what is going on, the dying and those keeping them company too. This is care.
“They speak about her death in front of her, but no one wanted to speak to her about it. She wasn’t allowed to talk about her own death. She wasn’t even allowed to know what was happening” Mark (speaking about his grandma)
Preparing for our own deaths and each other’s is an act of care that takes courage but that can also be life affirming. We can each be sure that death is coming, so we may as well be prepared as we can be.
We will prepare children too, by showing them that we accept that death is a natural and important part of life.
“My school could deal with death, they could try to talk openly about it, so we can prepare for the experiences. They could talk about it in assembly. I think you should talk about death in school so you can grasp it. ” Anna (16)
Beautiful things can still happen. Joy and fun can still exist, even in the face of dying. So can jokes.
We will simply be with people and not try to make it better. We will care for them by asking them what they want.
What would make things better in this moment, now? We don’t have to change. We don’t have to whisper or nod solemnly. We can still be ourselves.
“My mum said “why do you keep buying these cardigans? You know I am going to die” I said, “well I like them, and we’re the same size so I can have them when you are dead” and we both laughed a lot. We always made each other laugh” Teri
3. We are all different, we are all the same (please listen to us)
Something that children and other humans of any age who are the recipients of care have in common is this: they are all lumped together.
For example, if you are a child, you must like swings, sweets and Fortnite, if you are old you must like bingo, pop music from the 60s and biscuits, if you are ill you must crave peace, quiet and to lie in bed.
But we are as varied and as different from each other at all times of our lives and in all and any circumstances. Like snowflakes under microscopes we are complex, fragile and beautiful. All different, all the same. We need to be treated with care as individuals needing a variety of things on order to thrive and survive.
“We are all sorts, and we all have our funny stories. People need to ask each other questions and to listen to the answers. Not always talk about being ill all the time, if someone doesn’t want too. What you need is a few jokes. You need not to be bullied, I mean not be forced to talk or join in if you don’t want to. You don’t want to be talking about illness all the time you need a distraction. The carers need to be well trained; they need to listen and to talk, they need training to be sympathetic.” Phil
When we become the people, who need care (and we all will, we all do) or when we become the carers ( we all will, we all do) – we will still be complex, fragile and beautiful.
We will take care to get to know each other as individuals, and we will relish all the things we have in common too. We will love and accept each other just as we are: all carers, all cared for.
“People want to sing, dance, laugh. Well some people do. But also, to be quiet and to have things going on around but not be forced to join in. Because I am quiet does not mean I am ok. Because I am quiet does not mean I am not enjoying myself. We’re all different. You have to get to know people as individuals” Pauline
The things we loved and needed may change, but we don’t want to be lost in our illness. We might still need privacy and company. A good view. Inspiration. A reminder of the beauty of life. A reminder that death is just part of it
We don’t all our fun to be organised. We don’t want all our joy to be timetabled. We don’t want all our pleasures to be parcelled out to us in tiny packages at regular intervals, like medication. We might want spontaneity.
“ I said to her, will you still let me laugh or swear and be rude, I might be inappropriate or wild or be spontaneous, I’d like that. You see they just see me all wrapped up and this wheelchair they can’t see I used to wear stilettoes and dance on tables. I once sang “The Red Flag” in a coffee shop and got a round of applause. I have been to university; I am not stupid” Polly (telling me about a conversation with her carer)
Whilst acknowledging the challenges and difficulties that may come with aging, we will also celebrate the gifts that aging might give us, so that the other stories of being older are told. We will do this by making older people and older peoples stories more visible. And not just old people, but other people who are recipients of care: those who are ill, injured, unwell, disabled, dying.
We need to listen. We need to pay attention. We need care to be a creative and bespoke response to the individual person.
“ I said to her shall I sing you to sleep? Or do you want to be alone? Sometimes she said she wanted to get on a bus and go on a journey, sometimes she said I am ok in bed, I can sail on my ship from right here in my mind, thank you” Gerry
Some of us need hugs, some of us want to go jet skiing, some of us want a perfect cup of tea, some of us want a bit of lippy. Someone might say “you shouldn't get on a skateboard because you have arthritic hips, “ “well stuff that,” you can say, “I am going to do it anyway.” You can say, “I need to laugh. Especially now that my world has shrunk, and I am not allowed to go to the woods or paddle in the sea. I want to hear jokes and see sunsets.”
“My father has one particular carer who comes from a completely different part of the world but the two of them are like twins- no matter what happens he can always find a way to make a joke and they both get on so well, this chap just comes along and makes him laugh and my father is fired up by it” Josh
We need to ensure that carers have the time to care.
Sometimes people need to go outside or just open a window or sit and enjoy the garden. To feel useful and have a conversation about something important or fun (but not about being ill). Also, they might need to be able to have a conversation about being ill or about dying sometimes. (When you are cared for people talk about illness all the time or not at all.)
“My dad has been declared with a terminal illness and the trouble is you get left; they can’t help it as there are so many people. It’s about communication, you are not told anything. But the nurse is good with my dad who can be quite prickly.” Stuart
Sometimes people are neglected. The staff are overworked. People are left to roam, with no one to talk to, wearing other people’s underwear. So, it comes back to paying carers properly and staffing sufficiently and that circles back to valuing all human life equally.
“ They laugh and tell jokes, they are good at it, they are nice, and kind and they do not yell. But they need less hours and there needs to be more of them.” Charlotte (talking about her Nana’s care home)
So, if we want to value all human life equally, then we start by re-examining how we value “worth”. So that our worth as humans is not merely measured by what we can produce or what we own but our worth as individuals just simply for being us. For all we are.
Well paid carers, well supported care provided to all citizens, could lead to creative and fulfilling job for people. Instead of harried dispensers of medication, wet wipes and microwave meals, carers and the recipients of their care could co-create, sing together, knit together, write poems together, do carpentry together, gossip together, reminisce together, journal together, learn together. The caring could become joyously reciprocal if caring was a creative practise. We could practise radical care as activism- caring to bring about social change- an improvement in the quality of all our lives throughout our lives. We could turn caring into an art form- with any and all creative expressions explored and enjoyed. Including sitting quietly together. Including active listening. That would make the job attractive. That would make everyone happier and more fulfilled.
As it is at the moment the recipients of care are without power, it is assumed that they have nothing of any use to offer. At the moment the carers are without power too, their skills unappreciated and their well-being neglected.
But we acknowledge that care can be reciprocal. That we all still have lots to offer each other and ourselves. That care is of the highest value and should be treated accordingly.
4: Changing The Systems of Care
“You can use art to raise awareness of something, and then there are protests and people on the streets demanding change, because they are angry about what has happened. So why then do you never see people protesting about the state of the care sector?” Emma
We do not usually take to the street to demand change if we are unwell, or frail, or vulnerable. We may not have the strength or courage, or it might be simply that demonstrating in that way is too difficult for us in terms of access or opportunity. So, there is lots of anger and frustration, but it is usually expressed behind closed doors.
We will help to amplify those voices and tell those stories, to raise awareness and to support positive change. We will do this using all and any of the tools at our disposals including social media, art, conversations, campaigns and petitions. We will contact MPs and write to our representatives.
“Let’s get people to express their anger because there is an awful lot of anger about the inequalities. We need to energise people, to get out, to start vocalizing what is wrong with the care system” Ritchie
There are many things wrong with our current care system. As we’ve discussed, the people who do the caring are largely unsupported and undervalued. Perhaps this is because of what we currently value most highly: wealth. Therefore, we do not value people who need care because they can no longer generate wealth. So, the cared for are not equal to us. They are regarded as less important. The carers are also not valued, as the job they do cannot be seen as important.
We also recognise that care is gendered, and that the responsibility of care is placed largely on the shoulders of women, the working class and people of colour. The current care system is therefore dependent on inequality.
We will commit to addressing inequality first.
If we wish to change the care system, we have to make real radical changes to ourselves and to government. First of all, we have to believe in and fight for equality for everyone. If we recognise that all human beings are equal, we then recognise that all humans have a right to the same level and quality of care, and if we recognise human life as being intrinsically valuable, that we are worth something simply for being rather than for the wealth we can generate, then we will believe in and fight for a high quality of care for all.
If we are all equal, we all deserve care, and the same quality of care too
We will fight for equality within (rooting out our own prejudices and confronting them) and without (campaigning for an end to any and all systems which regard one group of people and less in some way than another group of people, including, but not limited to, the ill, the elderly, the dying, the disabled).
From this foundation of equality, we can base our society on a new system of care, which places compassion and care at its very centre.
We will accept that we are all share a responsibility to each other and the world. We will accept that we are all responsible for caring for ourselves, each other and the world. No one is exempt from this responsibility. Everyone should contribute what they are able to.
“ I just think we need to have a caring government as well. So, the whole thing is built on care. So that government policy decisions are about valuing care as a top priority, the government’s job is to care for us, and our job is that too. Could we have an economics of care? Like GDP measured in happiness instead of money?” James
Our current systems of government and healthcare are too inflexible. It is hard for care to flourish within such inflexible, bureaucratic systems. One example of this is the notion of family: that family can only be close blood relatives, that needs to be re-examined. Our families should be allowed to be more broadly defined, and a caring system needs to recognise that
“ Of course, the individuals were compassionate and caring but the system didn’t help my nan. Our current system is set up to compartmentalise care, so that even though my nan had the day to day responsibility for her elderly neighbour., they would not let her have any power to make care decisions, as she was “not family”. We need to create a system that can cope with difficult circumstances because compassion doesn’t work in boxes” Dan
We connect with each other as human beings; we cannot connect with a rigid inflexible “system” in the same way. A system cannot tell you a joke, give you a hug or make you a cup of tea. You can’t ask a system to do you a quick favour.
Perhaps we can go some way towards fixing this by making sure the system has compassion built in, by recognising complexity, being flexible and fluid in its responses, and by trusting people to make decisions. Whilst balancing this with protecting peoples welfare. This is difficult, yes. We could make a start by asked the carers and the cared for “what do you want? What do you need?” and then the system can step aside and let humans get on with the job of caring for each other.
We will work towards a future when care is of such high quality and when all humans are treated as equals, so that suffering is minimised and that quality of life throughout our lives for all of us is a reality.
We have examples of good practise all around us to help us rebuild a system based on compassion, as well as examples of bad practise to show us not what to do. There are people already doing the good work that needs to happen everywhere, all the time. There are people and organisations who have placed care at the centre of what they do, who are flexible, fluid and responsive in their approach. Let’s speak to them.
“When dad died we were with him, he had a massive stroke, he could hear but he couldn’t speak and I told him a story I knew he heard because he cried and we held hands all of us we were there for 7 hours he had pneumonia I said relax dad you can take a nap and he passed away a few hours later, a gentle passing. They allowed that to happen, they listened to us.” Asif
We will tell and share the stories of these people and organisations who are trying out a different model of care, who are making the best lives possible for everyone. We will learn from them, implement their good practises in our own lives and work where possible, and we will commit to learning and improving care, adapting as times and circumstances change.
“We try to make whatever people want possible in the hospice. ~We’ve had parties in here, weddings, we have had dogs and cats staying, live music, all sorts. We try to keep asking people what they need to make the moment they are in the best moment possible” Nancy, palliative care nurse
Let’s have the courage to accept the complexity of what it is to be human. Let’s recommit in each moment to be more caring, more compassionate and more loving ourselves, and to ask the same of each other, our systems, our governments. Let’s keep the best and rebuild the rest. Let’s learn with humility from those that know from lived experience.
“I asked him what he wanted, and I understood after a while that he wanted to ride a horse on a beach at dawn. So together we made it happen” Corinna, artist, and Tariq her severely physically disabled fellow artist and friend.
5: Future proofing and utopia building- (how things could be)
“There could be places were students and older people, disabled people live together in halls, everyone has their own space but there are communal spaces, the older and the younger people teach each other stuff. The students get free accommodation for doing jobs in the housing. Both ages can teach each other skills. We can deal with loneliness and isolation like this, because lots of people not just older people, feel like that. Everyone could agree democratically what they want: they might have parties on Friday nights or tea parties on Sundays, they might have a in house masseur . More imagination less segregation!” Isiah
We considered different models of living together, where the care could be reciprocal, where loneliness and isolation were things of the past, where everyone could be valued for all they are. There are already examples of how this is working for us to emulate, such as in Dutch nursing homes, where university students live rent free in exchange for being “good neighbours”, for skills sharing, where lasting friendships are made.
We will desegregate the generations and make intergenerational co-habitations an option available for everyone who would like to do that. By doing so we will demonstrate this to be a viable economic model: a fair exchange of services that has the potential to result in deep human connections.
“My mum and dad have spoken about wanting to co-habit with their friends and share a carer. Maybe that will happen in the future – there can be alternative arrangements, not a care home. My grandparents were in a care home and they weren’t happy, because with dementia it is hard to be amongst the unfamiliar, you need your friends, you shouldn’t be with strangers” Jos
When we need care, we also need our independence, we may need professional help and guidance, but we also need friends. We might need space to be alone and space to be with people. We might need peace or entertainment. We might need relaxation or stimulation. We might like to be with people who value us, who treat us with love and compassion. Too many of us, once we are in a position when we need care, are suddenly in the company of strangers. We need unconditional care, from people who know us and love us. We also need professional care, from those who are experts in their field.
“My mum prepared well in her home when she knew she was getting arthritis, like having taps fitted for weaker hands, even though she was not old, she pre-empted her own changing needs, so she was prepared in a positive way. Her and her friend made plans to live together in one house. They are future proofing” Tony
Together we will create different living options for all people, including intergenerational living and group living with friends. We will normalise future proofing of our homes or plans so that all of our changing needs can be met with ease. We will not be afraid of talking about what those changes might be.
“Let’s hear about illnesses and injury more, it should get spoken about at school. Not just about aging because you can get ill and need more care at 17” Alice
In the future schools could acknowledge the deaths and illnesses affecting teachers and pupils and honour the lives of those who have died so that grieving can be given the space that is needed.
We will not “disappear” the ill or the dying. We will acknowledge dying, death and illness as part of life, and help children and each other to understand and to process this by talking about it openly and gently
We must acknowledge that many young people experience being separated from older relatives or from the dying, without being asked what they want. The assumption is made that young people and children “are not going to want to see someone when their hair has fallen out” for example. We must explain ( in an age appropriate way) clearly and gently and ask everyone concerned what they want and what they need and take action accordingly.
“Yes, it was done with the best of intentions, but at 11, I wish someone had asked me if I wanted to see my Gran. She brought me up, and then I just wasn’t allowed to see her ” Gill
We do this because we only allow ourselves to value certain kinds of bodies. In the future we will not objectify each other’s bodies, by describing or presenting only one kind of body as “beautiful” and another as “ugly” but deeply appreciate the wonder of all of our bodies. We will do this by reaching a deeper understanding of how our bodies work and experience gratitude for that. We will learn to manage body shame, by being proud of all we all, by making all kinds of bodies visible and celebrated for all they are. This way we can help people to be as comfortable as possible when they are physically vulnerable and being seen to medically. We shall not make unhelpful comparisons or judgements of “imperfect” bodies but love all bodies, starting with our own.
“ We need to see bodies that are a bit wonky or decrepit, so that it is not such a shock when we get old or ill or broken. We need to see bodies in different states. My Nan doesn’t care about being naked now, she feels free. She made me think about this kind of thing.” Darcy
We will love and appreciate our own bodies and minds for all they are, perfect in their imperfections. We will start with ourselves and then extend this love and appreciation to all bodies, in all their forms. We will make sure that all shapes, sizes, abilities and ages are represented in the media and that all of us are encouraged to appreciate our bodies, our minds, and what they do for us.
When we do this, we will soon see that our environments need to change. Cities need to be accessible and easy to get around for everyone, so that cities themselves are caring.
We will support and develop the technological advances necessary to make cities and environments themselves more caring, with changing taking places all people can access amenities, culture and transport easily. Also, we will work towards homes themselves being more caring by tech being developed to better serve the residents whatever their particular needs. That tech would not and should not replace human interaction but be part of an ecosystem of care which helps all people to live good lives. Tech can advance and extend access to certain types of care - for example people who live in remote communities can talk with medical professionals online. There are enormous benefits which we recognise. But we acknowledge too that tech can’t give you a hug (if a hug is what you want), so that human contact is essential also.
“I used to talk a lot to my friends over skype, but it is not the same as sitting right next to them, and saying hello, because I can sense your body language and there is that companionship. When you see the tech that arrives in an ambulance nowadays, is unbelievable, it is so impressive, but it not the whole answer to everything. It’s finding the balance between” Matt
We will help to create a new system of care which takes into account individual preferences. We will make sure that the system can be responsive and led by people at all times, acknowledging the wide variety of human experience, needs and wants.
“I personally don’t want a stranger to hug me, but someone else, they do want that, I would rather interact on skype because I like that distance, but someone else needs their care to come one on one, in person.” Nathalie
The new system of care should recognise families come in all shapes and sizes too, and that we need to redefine what family means.
We will allow people to self-define family and designate their own next of kin.
For the system to change we need to listen to all the people who give and receive care, their experiences, their needs and wants, and take action, accordingly, recognising their lived experience as expertise.
“We need equality in the face of bureaucracy - a sincere consultation is needed-active listening followed by action” Dan
We need to reconsider our responsibilities for our own and each other’s care.
We recognise that in the future there may be more people who need care.
We also recognise that we are all already facing huge challenges, such as climate change. Therefore, we all need to be brave and forward thinking, have ideas, use technology and be positive about what we can do for each other. There seems little point in extending our lives if they are miserable. But the answer is making our lives better, with care. We need to explore creative solutions to these issues, together.
“Making and participating in art can one way to energise people, to get them to start vocalizing what is wrong with the care system. And have ideas of how to make it better” Pippa
Art can help us express difficult things and try out solutions safely. So, art can be useful to us all, and should be accessible to us all, as one of the tools to make a brighter future. We can ask for more and be thankful for all we have. Gratitude and demands can co-exist.
“I think we need to remind ourselves in a way, that our parents looked after us, now it’s our turn to look after them. If we can. We just need to value each other more, and care more about everyone, not just think about money and about getting more things. That doesn’t feel right anymore” Stefan
To be continued….
Thanks for reading. I hope this manifesto has given you some food for thought. So how do we get there, to a future where care is central to our existence, as individuals, in our community, in the wider world? We can start with ourselves I think, and close to home, with those whose lives we can affect directly. We can care better, deeper and more compassionately towards ourselves, our friends and family, our neighbours and our little patch of earth. This way care, as a radical, transformative action, has the chance of redefining worth, value, wealth, success, happiness and improve all of our lives right here, right now.
Please let us know your thoughts.
With love
Bernadette Russell
Writer-in-residence
Frequency Festival 2019
All artwork by Dan Thompson
A Manifesto of Care by Bernadette Russell and friends was commissioned by Frequency Festival 2019 as part of the OP Care commissioning Partnership. The OPCARE Commissioning Partnership comprises research teams from the University of Brighton (Lead Researcher), University of Lincoln and University of Birmingham and arts organisations Fabrica, Ikon gallery and Frequency Festival and funded by Wellcome Trust (Research Enrichment).
Words Bernadette Russell
Music by Dez Moran
Artwork Dan Thompson
With thanks to Lindsay Seers, Dominic Campbell, Rebecca Swift (Entelchy Arts) Samantha Lindley (Director of ProgrammesThreshold Studios)
With thanks to Paul, Bethan, Harry, Annie, Maeve, Karl, Stan, Tash, Adrian, Dan, Jackie, Karin, Mark, Anna, Teri, Pauline, Polly, Gerry, Josh, Charlotte, Emma, Ritchie, James, Asif, Corinna and Tariq, Isiah, Jos, Tony, Alice, Gill, Darcy, Matt, Nathalie, Pippa and Stefan.
Also thanks to Dominic Campbell (co-founder of Creative Aging International) Rebecca Swift (creative director, Entelechy Arts) and Nikki Jones (Macmillan palliative care nurse and make up artist)
