As a society, how should we approach the care and support needs of adults with health problems or disabilities and those who support them? How can we make caring sustainable and dignified?
This digital exhibition, presented by the Sustainable Care Research Programme, reflects on people’s experiences of care over the last 18 months and asks: what do you think care should look like in the future? Join us to better understand everyday experiences of care, the pandemic, and ideas for building a system for quality, sustainable care.
We invite you to view and reflect on the exhibition below.
The Silence of Carers by Pauline Holland
One in eight of us are fighting that battle you know nothing about: even Johnny Rotten.
Like every other carer on the planet, I never expected to be one. The simplest little everyday act, like leaving the house, becomes a logistical operation that would leave a high-end MI5 Officer barricading himself in the bathroom, inhaling lavender like it’s heroin. Like Ginger Rogers, you are doing everything that Fred Asdaire does, only backwards and in high heels (while Fred gets all the money, and credit). Your career suffers. Your friendships fall by the wayside. You have the hair and hygiene of Rasputin. After a while, you grow carer superpowers and manage to sprout a serial-killer-esque calm amongst chaos. Some of us must even make life or death decisions on behalf of somebody else. Many of the Covid restrictions have long been part of your life, and you don’t blink at them. You can’t go on a sun holiday? Ha! You can’t get to the bathroom.
For me, becoming a carer has awakened deeply weird and unfashionable ideas and thoughts that belonged to my grandparent’s generation: ideas and words that exist now only on old pages of old books, like sacrifice and duty and honour. They sputtered their last gasp a long time ago, probably around World War II. Born in the 1970s, I was told to seek Achievement! Success! Productivity!! Not only can you have it all, but you can have it all on your own terms! We all live in this world where we are overwhelmed by choice, all-day-every-Goddamn-day, in our little flashing dictator frenemy that never leaves our sides. Studies show that the more choice a human being has, the less satisfied they are with what they choose.
How amazing it is that the thing you would never have chosen becomes the thing that gives your life such meaning. For there is a spiritual aspect of caring for us carers, something that most people know nothing about. This secret, inner world you both share has its difficulties and hardship, but there is joy, too. You have an unshakeable bond with another human being. You face and navigate the world together. You find yourself holding that sword that flashes between them and the world, and using it even though you don’t know how, because it’s been thrust into your hand and you have to. Sometimes, you feel that you might even know what it is to be the catcher in the rye.
You know life in a way that most never will. So much of the clamour and vulgarity and shallowness of the world falls away and what is left is life as it truly is. Love, love, and more love. You have the unassailable feeling that you are doing what you were sent into the world to do. A feeling that I used to think would come with work, with having a career, and never did. And you silently store this in the treasure-house of your heart.
My Beautiful Son Conan
My painting shows my son Conan, allowing a rare glimpse of his eyes. Conan has autism and learning disability. He is lovely and funny. He lights up the life of everyone that knows him. He is 28 and attends a training college on weekdays where he continues to learn life skills including literacy, maths and trainspotting.
Conan does not like overnight respite because of the changing care workers and different respite users. He prefers to be with staff and peers that he has built a relationship with. He would like to live part time with the community where he attends daily and part time at home with his family. I have applied for him to be accepted. I will continue to bring Conan home every week on an informal basis.
I would like social care to make it possible to share care. Conan needs independence but also contact with his family. Social care does not allow for this officially. I will still be able to bring Conan home. We love and need him as much as he loves and needs us. I would like recognised shared care. I think this would also be cheaper for the government as Conan requires two people caring for him when he is outside home. If he was home for half of every week then this would cost a lot less. I am Conan’s mum and carer.
Deirdre Convery, Belfast
During the pandemic my husband was rushed into hospital with a perforated gall bladder. He caught Covid and was one of the first to go in isolation for 2 weeks and was very ill.
I lost my best friend to a hit and run accident and my sister to a brain tumour aged 56 during the pandemic.
I now also care for my elderly parents as well as my husband.
This poem that I wrote was cathartic and heartfelt.
Yingzi Shen, PhD student, Department of Sociological Studies and The Centre for International Research on Care, Labour & Equalities
Those drawings, poems and pictures are so touching and they remind me of how my mother cared for the whole family under tough circumstances during the lockdown. After being quarantined at home for one and half months since the outbreak of Covid-19 in Wuhan, which is close to my hometown, I began to realise how fragile humans can be and it is the care that we receive and give everyday that helps us stay strong and resilient. Therefore, I think the online exhibition is a very good way for carers and care receivers to value the unpaid care and reflect on how our lives have been changed by carers and what it means to us.
Dr Kate Hamblin, Senior Research Fellow, The Centre for International Research on Care, Labour & Equalities
I’m exploring the exhibition online, which is apt given how much care and caring became remote, separated by risk and rules regarding social distancing and travel during the COVID-19 pandemic. Horizons, shrunk and diminished by the pandemic, stretched out again with the use of technology, facilitating catch-ups, quizzes, weddings and funerals via video-link; visits replaced by phone calls, as in the artwork ‘Befriending’. In my research, I’m interested in how technology can facilitate care and relationships, not replace them. Annie Austin, colleague of ours on the Sustainable Care programme, wrote about an integral part of wellbeing – sociality – defined as “good social relationships” as being not just a part of a good life, but fundamental to it. Care is bound up with sociality and I think this exhibition speaks to that – how issues of care and good social relationships are intertwined with our wellbeing and the wellbeing of the important people in our lives.