Author: SLH

This piece reflects the research findings from interviews with Disabled People’s Organisations (DPOs) across the South West of England. This was carried out by ‘We Are The People’, a small research team of disabled academics and non-disabled allies engaged in disability research and disability activism at Bath Spa University. They asked disabled people about their experiences of using DPOs in both quantitative and qualitative ways. . The mural represents extracts of the qualitative data. The included words are designed to showcase the breadth of disabled people’s experiences and can be read in different ways.  

 

Created in December 2024 using doodles and letterpress type on an old adana 8×5 desktop printmaking machine. To find out more about this research project, visit the We Are The People webpage.

 

 

 

 

 

Working together, compassionate care, improving wellbeing for all to share. 

The NHS is dear to all our hearts, minds, and in-growing toenails. It’s a national treasure that represents the very best of our caring intentions.  From cradle to grave, we desire the very best of health for ourselves, our loved ones and indeed all others too.

Also much more than just health, the NHS is a significant part of the economy, with a huge workforce of staff and volunteers that work tirelessly and are committed to the vision.  It innovates science, technology and pushes forward our knowledge to better our everyday human healing practice. 

Created to tackle pain, suffering and health inequalities on an humungous scale, the NHS is phenomenal in its achievements in the past 75 years.  And while we celebrate the success, we also recognise the challenge. The universal right to health and life is an ongoing ever changing thing, with an equal share of up’s and down’s.

So to praise the many things that the NHS is, the Arts Team have worked with local artist Stephen Lee Hodgkins and staff to create  ‘The Fortunes of the NHS’. A pack of playing cards, with 5 ways to play that celebrate the NHS and all the wonderful people and places that make it happen.  Made with good people of York and Scarborough Teaching Hospital NHS Trust as part of ‘Our National Health Stories’ these cards are full of hope and imagination. 

‘The Fortunes of the NHS’ are a playful tool to help us talk about our health, think about the future of healthcare and pass the time together with a bit of fun.  They can be played as a quick and simple game of ‘pairs’, or like that of ‘rummy’. They can be used as storytelling prompts for creative exercises to tell tales that break the ice, help develop passionate and persuasive presentations, or in activities that plan for the future, understand the now and reflect on the past.

The Arts Team and Stephen will be giving demonstrations around the Trust and leading patient and staff workshops with the cards.  The Arts team, supported by the Friends of York Hospital will be giving away limited edition packs of  ‘The Fortunes of the NHS’ cards.  Stephen designed the cards, which contain 32 doodles and positive quotes reflecting everyday things and happenings in and around the Trust. So if you would like a pack, or for us to come along to play a game with you in your workplace to support staff, visitor and patient wellbeing, or do a workshop with your people and team please do get in touch.   

As the card ‘The Break’ reads;

‘Thank you for all that you do, breath out, relax’.

A Disability Arts and Archive Showcase. Fri 12^th, Sat 13^th, Sun 14^th July 2024, then til December displayed in various locations around the Explore York Library and Archive. York Explore Library and Archive, Library Square, Museum St, York YO1 7DS.

Come discover histories of disabled people at York Union Workhouse in the Victorian times. Explore current issues with local Disability Artists and the Mother Carer.  Question what has changed, or not and imagine with us a brighter, inclusive future.

This exhibition creatively presents some ‘irregularities’ reported at York Union Workhouse in 1899, as well as other, ‘current’ issues for disabled people and their families.  Read here the newspaper article that inspired us.

See the full exhibition here – sidbaility.net

Summary illustration doodle for ‘A Fairer Future for York’ June 2024. 

‘York has a long and rich history. It boasts an impressive offering of culture, heritage, and hospitality as well as a high quality of life for many of its residents. However, its wealth, resources, and quality of life are not shared equally by all and if things continue as they are, this gap is only going to widen. Yet it’s not impossible to change course, set our collective sights on something better, a Fairer Future for York.’ Extract from ‘A Fairer Future for York – 2024’ – download the full report here.

 

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?’

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. 

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;

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.

 

2. 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.

 

3. 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.  

 

4. 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.

 

5. 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. 

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.  

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.

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. 

 

Stephen Lee Hodgkins, January 2024.

‘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/

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. 

‘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,

07951050153

hiya@stephenleehodgkins.net

@HodgkinsSL

 *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. 

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.