What is the Future of Care?

For last few months I have been pulling around York a ‘doodling’ handcart complete with paper and pens asking people a question scribbled on its side, that is;

‘What is the future of care, independence and living well? Is it hope or hell in a handcart?’

Image of someone drawing on the cart.

I took the cart to many places around York, the library, the hospital, the cancer care treatment centre, a Parkinson’s support group, the university, a wellbeing group at the art gallery, just out and about in the street and also by email, video call and text. I spoke to loads of different people, disabled people, carers, workers, advocates, activists and others. People added doodles and statements to the cart, or shared things for me to note.

I have for a long time wanted to create a something portable that would enable conversations about important issues that affect us all, but that are often only discussed in ‘professional’ spaces.  While some organisations do invest time and effort in understanding what people want and embedded lived experience into their practise, this varies considerably. So with the help of the Arts Truth Rights project and local artist and maker Rob, the I built the cart and took it round York asking people questions about the future of care. 

Image at University of York, with three people standing around the cart.

And to sum up what people have said to me, it’s ‘hell we’re heading for sure’.  Sadly too, for some they say, hell feels not that far away.  The lack of help and assistance, the push back from services, the guilt they are made to feel, the costs and the inhuman ‘professional’ responses to need and wellbeing burns painfully deep in everyday lived experience.

The scale of the problem is huge, complicated beyond comprehension and feels undoable. The feeling in York is not unique. Elsewhere as ‘The Campaign for Real Care’ and others highlight,  resources are not working for people, the workforce is undervalued, local infrastructure has been striped bare and practise and policy bump along in a contradictory cycle. Indeed, many aspects of The Care Act, that would make a difference are not being implemented by public bodies.

That said, people are hopeful about what is possible, and more importantly full of ideas about how to change the tragic crisis that we face.  Thinking though what has been shared with me, I see five things, that people want the future of care to be;

Image of a doodle on a mirror with five horizontal brightly coloured panels, it reads 'hopeful, human, easy, imaginative, unlimited'.

  1. Hopeful – Barry, the son, and Isabel, the mum said what we need is ‘good love, good homes and good people’. They told me that they had a hamster once and was told that it would live for 3 years. Barry said he loved this hamster so much that it lived for 6. So if we bring love and hope, we can make literally life changing changes.


  1. Human – Trish described themselves as a ‘positive homeless person trying to break their attachment to things’. They said the want to see less machines, more humanity and a sunny cabin that’s easy to access and open to all. A place that focuses on humans and their rights, not uncaring, pathological labels that judge and exclude on the basis of biased values or the money in their pockets.


  1. Easy – Ash said that they get social care support, but its far less than they need. The family make up the short fall. If they can’t cover the support, Ash is told they can go live in a care home. The Care Act says they are entitled to support.  The local authorities say they are not. Ash feels unsafe and unwell. Local officialdom says it knows best.  The system could be much easier.  


  1. Imaginative – Kay says she dreams of a ‘disabled valhalla’. An accessible paradise where we acknowledge our bodies, and minds as disabled by default.  Not ‘normal’ first or ‘broken’ as other. But where all bodies, and minds can achieve positive states of wellbeing regardless. Imagining better things from the full range of lived experience offers richer opportunities for change.


  1. Unlimited – Mik said he had symptoms of a degenerative illness but couldn’t get the tablets until he had a diagnosis. The waiting list is 18 months. Clara said she has been diagnosed with dementia and needs a home carer but cant afford the care charges she told she’ll have to pay due to debts. Both their lifestyles are limited. So we need to rethink resources, the real cost of things and what it is we value more, wealth or our wellbeing? We must no longer limit our opportunities.


So a what I take from this is that a priority for resources and all the responses that could be available to people is that they be more hopeful not fearful, human not demeaning, easy not bureaucratic, brightly imaginative and ultimately, unlimited in their value and support for all folk and communities. 

Image of a doodled rainbow with the words 'more humanity and contact'.

In addition to what the good people of York say, practical solutions to the current crisis can also be found elsewhere.  In ‘The Future of Social Care From Problem to Rights-Based Sustainable Solution’ Peter Beresford and Colin Slasberg argue for a new human rights based system and approach, free at the point of encounter, coproduced and accountable to lived experience, focused on dignity and respect, decolonisation and environmentally sustainability.  Similarly, the ‘Reclaiming Our Futures Alliance’ assert a National Independent Living Service (NILS), like an NHS, to provide the right type, amount and quality of assistance.  

Image of four people holding up a sheet of paper with doodles and words on it.  In the centre it reads 'what is the future of care?'. But while both approaches are full hope, provide an immediate plan of action and would practically make a massive difference, I can’t overlook that they are bound and restrained by money.  Not so much that there isn’t enough, as both set out the financial benefits of investing in independent living and quality care.  That is, greater economic activity and improved health benefits contribute to a positive and good society.  Rather they are restrained by the fact that financial wealth  is given more value than human health, wellbeing and care.  The current model of economics favours markets, not people. We to redress this imbalance, and assert more of a community wealth building approach, such as The Centre for Local Economic Strategies advocate for.

And unless we are honest about this in the long term nothing will really change.

Image of three people standing round the cart at York Hospital.

So if the future of care is to be one of hope we must really question our value in this respect. What’s really more important?  Budgets and the bottom line or our personal and collective wellbeing and community wealth?  I may not be able to imagine a care and wellbeing response running totally sustainably, beyond money, free, dignified and effective at the point of encounter in say 10 years.  

But with hope and a human rights approach that’s amazingly imaginative I can see this as becoming a reality longer term.  And our challenge is that we embed a human rights and community wealth perspectives in all that we do and commit to developing this right now.   

Many thanks to all those that shared stories and suggestions. The project was funded through and Arts Truth Rights  commission for Conversations with KIOSKs through The Centre for Applied Human Rights at the University of York in 2023.

Finally, here’s a doodled rhyme, summarising my reflections. 


A image of a doodled poem, reading; What is the future of care, independence and living well? A journey of hope? Or a handcart to hell. Support should be lovely, personal and human, Not labels of lacking, ineligible, subhuman. Getting help and assistance, should be so easy, Not this professional narcissism that’s complex and sleazy. So let's change this crisis, our wellbeing worth's more, And enshrine in all that we do, a new caring 'folklore'. Where our dreams and our needs are met as unlimited, Institutions closed down, human rights respected. Don't accept less, we're bold and imaginative, Let's create a 'Disabled Valhalla', that’s diverse and adaptive. Ivarr the Boneless will be our warrior god, Throwing all disablist policies to demon guide dogs. An accessible paradise, ambitious and real, Based on what matters. Not what they says in the till.

Stephen Lee Hodgkins, January 2024.

‘I thought you were going to look over that job’. 

‘I thought you were going to look over that job’. Stories of disabled people in the Criminal Justice System in Ripon in the Victorian era.

An Exhibition co-created by a group of people with lived experience of disability at Ripon Museum Trust. October 2023.

What is the lived experience of disability? What is its history? What was it like in the Criminal Justice System in the Victorian era and what do we know about the lives of disabled people who encountered it? Is it any different now? What will it be like in the future? What do we hope for? What do we fear?

This artwork explores the lives of seven disabled people who encountered the Criminal Justice System in Ripon for various reasons during the Victorian era. These were court cases that were heard at Ripon Court House and people who were held at Ripon House of Correction. It is based on fragments of their lives captured in censuses, newspapers, and police and court records.

In telling these tiny snapshots of a life, we have sought to present a creative, and hopefully respectful story.

Created during September 2023 by, Carol Turnbull, Charlie Dunning, MaryJane Olivier, Margaret Crosfield, Glen Griffiths, Linda Richardson, Anna Moore, Nicola Bradbury, Stephen Lee Hodgkins and the Artmakers from Henshaw’s Arts And Crafts Centre for RIPON MUSEUM TRUST. Special thanks to Jenny Clough, Pat Wilson, Jean Berry, Claire Greensit, John Holmes, Moira Smith and Mark Cronfield for their voice over recording, as well as Andy Bates and Laura Allan who coordinated and supported the project throughout. The project was funded by the Arts Council. See https://riponmuseums.co.uk/

‘…The beauty of the world lies in the diversity of its people…’

Created during cultural awareness week at York and Scarborough Teaching Hospitals NHS, this digital ‘culture collage’ piece is celebration of all people and their cultures within the trust.  It highlights our shared connections, influences and humanity that are both local and global.  Made from photos of people, precious objects, foodstuffs, words and insights shared as part of cultural awareness week in April 2023. 

Image of York NHS hospital in a collage style with a range of different elements including  people, precious objects, foodstuffs, and words.

The Future of Care – Hell or Hope in a Handcart?

‘Care’ is an emotive and under resourced issue that affects all of us. We can do it well and also very badly.  At its best it enables a level playing field, it heals, and empowers people to reach for the stars. At it’s worst it is limiting, isolating and torturous.  And at the moment it is in crisis.

Yet Disabled people* and their families have achieved much and shown how caring, inclusive and supportive communities can and do work. But careless budget ‘cuts’ and rationing of resources devalue support, that if invested in would otherwise promote independence and inclusion.

Care has multiple meanings too and people talk about care in different ways. Overworked, undervalued professional’s focus on ‘needs’, ‘functions’ and ‘safety’. Whereas ‘frustrated’ disabled people and their families just want to get on with ‘being independent and included’, ‘having a life’, ‘participating, contributing, achieving’.   

So what is the future of care?  What could it be? What should it not be? How does it work well? How does it fail? What do we need to do to to make it better, now, soon and later?

These are the questions I am keen to ask.  And I’ve built a handcart, with a big space on it for people to say and draw what they think, or let me record their voice, take a photo or to tell me and I’ll capture it from them.

I’m going to wheel the handcart around York and talk to people and communities with, or without, an interest in care and disability.

Then once this is done I am going to use the things people have said to create a doodled summary of the themes and issues about how care is now and how it can be in the future.

Involving everyday people, and what they say and think, valuing their contributions about how the future of care can be better or worse is crucial to positive change.  And I hope that this approach of a ‘creative, conversational arty cart‘ will help gather some ideas for this. Care’ what ever its form can be better.  

To find out more, please do get in touch.

Stephen Lee Hodgkins,




 *By ‘Disabled People’ I mean, in the widest sense, those who have diverse bodies and/or minds.  That is also, those with impairments that are physical or sensory, or experience mental health issues, chronic illness, long term health conditions, learning difficulties, learning disabilities, autism and associated labels, neurodiversity and other issues. 

Door 84 History Ox

With some young artists at Door 84 it was a delight to create this local York history collage. We used an old pub sign from the Castle Howard OX and a range of old guide books, maps and postcards.  The approach was rip up the books etc and paste photos on the ox and text on the Oxen, adding then an outline in black.

The finished piece is fantastic and now hangs on a wall in Door 84.     

Disabled Peoples Equality – Some history and politics.

Large wall doodle art timeline created for Action on Disability, West London. Includes various key moments in disabled peoples history and politics such as; 865 Legend says that the Disabled Viking prince, Ivarr the Boneless, led the invasion of England and was carried into battle on a shield’, through 1965 the Disablement Income Group, run by disabled people lobbies for changes in disability policy’, and 2023 New Action on Disability (AoD) Centre for Independent Living opens.’

For more about Action on Disability, see- https://www.aod.org.uk/

Hardacre – labels for a greengrocer.

In 1873, in The Groves, York, Charles Hardacre, a greengrocer seeks help. And within records from the York Poor Law Union Workhouse Committee at that time, under the entry for ‘Quantity and Description of Relief in Kind’ its states he is offered ‘examination and assistance’, at the cost of 24 shillings.

The ‘description of disability’ penned in an inky script as ‘lunatic’. This piece is a tribute to all those in Mental Health institutions, past, present and future. Considering the current crisis in support, it asks the question, how it is that we can better frame, respond to, and record our inevitable experiences of mental distress and health?

Click here or the image below for a pdf with a more detailed description of the piece.

Photo of a piece of art on an easel in front of Bootham Hospital York. Made of reclaimed materials from The Groves, York, including part of an old backyard door, and signage letters from, the now closed, Castle Howard Ox pub on Townend Street, 65 x 65 cm, Stephen Lee Hodgkins, 2023.

Made as part of the ‘Heritage Hunters’ community heritage research project with York Castle Museum and The Groves Association.

Thanks to Explore York Libraries and Archives and Borthwick Institute for Archives – University of York. And finally, a very big thanks to Imogen Kate for the excellent voice over. Stephen Lee Hodgkins, May 2023.

A History of Hull Minster 1086 – 2022

With near on a thousand years of events and happenings, it was a pleasure to create this timeline for Hull Minster. 

Hand drawn, digitised then printed the piece stretches over 8 metres in the newly refurbished entrance and welcomes visitors with many quirky doodles representing the many goings on of this magnificent space.  

Here is an image file of the whole timeline.  

Image of the Hull Minster timeline

Find out more about Hull Minster here –  https://hullminster.org

How Educational Systems respond to Diversity, Inclusion and Social Justice.

Here is a three minute audio visual summary – ‘How educational systems respond to diversity, inclusion and social justice: Disability, power, discipline, territoriality and deterritorialization’. By Navin Kikabhai, and published in The British Journal of Sociology, 73 (4), July 2022.

Original article – https://doi.org/10.1111/1468-4446.12969 for the original article. 

Plus see here a one page doodle summary created from the clip.

We Are Pathology

…Looking within, to look out for folk, from a hidden corner…’

Celebrating all the very hard work of Scarborough Hull York Pathology Service (SHYPS), with this huge doodled wall art recently installed in York and Scarborough Hospitals. Plus also, 200 #letterpress prints for the staff based on this piece were created as part of this work. 

Following a visit to SHYPS service I doodled a shared spoken word piece based on what staff said to me about their work, wellbeing and generally how they go proudly about their business to get stuff done together.

I then set this in letterpress type, sent it for review, did some edits, then with digital magic created the wall art piece using both the doodles and letterpress text forms.

Then, visiting SHYPS again I created 200 letterpress versions of the piece on an vintage #adana8x5 machine on handmade lokta paper. One for each of the staff.