The other day I woke up at 5am, worrying. Soon I might need support for washing, dressing, toileting, going out, living my life. Where will I get it from?
I ran through what I knew in my head about social care in the UK, whether I could afford it, who might pay, where that would leave me. Could robots look after me? What if I get married? I didn't know which was more likely, or desirable.
I'm kept awake by these thoughts, made immediate by my disability progressing with age and accident. I'm not the only one: the covid pandemic has raised the urgency of these discussions for all of us.
Lockdowns laid bare the structures and people that our societies depend on. There were devastating losses in institutional settings, where “care” turned into catastrophe.
This edition explores how disability sector is finding new ways to imagine care and support, and argues this is the area we can make our most important contribution to a new world.
In this edition I explore my own experience and emerging directions in policy on social care. In particular it is based on two recent reports:
- Transformation of services for persons with disabilities, by Gerard Quinn, Special Rapporteur on disability for the United Nations (Quinn)
- Support systems to ensure community inclusion of persons with disabilities, United Nations Human Rights Office (OHCHR)
These reports put disability rights in dialogue with growing global discussions about what care means. They argue for, in Quinn's words, “a wholly new philosophy of service and support,” grounded in personhood and social inclusion.
The gendered nature of care
As for many of us with disabilities from birth or childhood, a lot fell to my mother. She was the first to notice there might be something to see a doctor about, she did most of the physio I needed, she kept better notes that my doctors, she helped out on school trips.
Wherever I've travelled I've seen the extraordinary efforts that families make to look after their children with disabilities. The majority of this unpaid care is provided by women and girls. Very often it's the mother who's responsible to make the bridge into society, and sometimes they are blamed explicitly for the situation of their children.
Current forms of care
Beyond unpaid care, the established forms of care and support for disabled people are “often provided in a medicalised, segregated or institutionalised way” (OHCHR).
Institutions and segregated approaches remain a primary way support is provided, despite efforts to deinstitutionalise. This is true not just for disability-related care, but also for other groups, including children, refugees, and older persons. Disabled people are often over-represented in those institutions, too.
Traditional approaches are compounded by bureaucratic constraints, austerity measures, and where the for-profit sector is involved, capitalist practices with few checks and balances. In Australia, almost a quarter of disability services do not even employ any disabled people. In Ireland, support for children with disabilities has waiting lists of five years and accessing them is an experience of “constant worry, uncertainty, inadequate support and endless struggle”.
These reports show part of how these systems are structured disempowers recipients of care:
“Caregiver-centred systems create a power imbalance between the caregiver and the person receiving care, leading to paternalistic practices and attitudes that create an environment that heightens the risk of violence, exploitation and abuse” (OHCHR)
All too frequent news confirms that risk of violence and abuse. There is a tendency, in Quinn's words, “to bypass the wishes of the person and to entrap them in a world not of their own making”.
Making our own world
As I grew up, I started to get help from outside of my family. I needed help to stand from a chair, to climb some stairs, to get up after a fall. I had to learn how to get support from friends and strangers. I was awkward, ashamed, adolescent. Somehow, anyhow, I asked.
At first I felt I was a burden, and sometimes I still feel like that. I have a deep gratitude for those who showed me it could be just one part of of relationship. By the time I was in my 20s, I was getting help from friends, colleagues, strangers, taxi drivers and many others. Needing assistance became one of the ways I'd found to make friends. It can bring us closer.
Disabled people have been part of care and community from before recorded history. Archaeology shows people surviving with conditions that show how their communities must have rallied round. The “bioarchaeology of care” can be a way into reflecting on how communities are formed.
More recently, disabled people have led movements to find new ways of care and support. For decades the independent living movement has created a philosophy of interdependence and centres that make it possible. As one definition goes, independence does not mean doing everything yourself (after all, who does?). Independence means having control over your life.
Needing more care
In my recent misadventures I needed more intense care. I had extended stays in hospitals because that's where it could be provided. It was new for me, as an adult, to receive that level of personal care. But it only took a few days to get used to strangers helping me wash, wipe my bum, get dressed. That was the easy part.
The hard part is the uncertainty and lack of control. The hospitals were chronically short-staffed and didn't always have the right equipment. Care was provided in a medicalised way, which often contrasts to how we as disabled people manage our bodies. I was not in charge.
Getting out of hospital, I set things up so I could carry on living by myself with reduced mobility. An essential part of this is a buzzer I wear around my neck to press if I fall. The local council has a careline team that will come and help me stand.
I asked a friend in Brazil how he managed his falls. He told me one time he had to shout out the window. The doorman heard him, and got a key from his brother who lived in the same building. I don't know my neighbours and they might not hear if I scream. My friend agreed that the careline is what I need.
As well as the practical assistance this system gives, there's a tremendous peace of mind. This support service is a basis for me living life as I would like to. Quinn has a vision of how services should do this, asking we take “common humanity” as the “core departure point”:
“The objective of services must no longer be about maintenance, care or protection. Indeed, it is often said that the best form of protection is to have a friend. It should be about autonomy – voice, choice and control – and social inclusion. Services of the future should primarily be about enabling one to self-actualize in the world.”
How we lift each other up
Sometimes the best form of protection is to have a friend. Let me tell you about Tim. We've known each other for over twenty years, and his moral clarity and prize-winning intellect have profoundly influenced me.
He's also one of the people that has most lifted me about the place. Tim has helped me stand up from toilets, get onto buses, go to beaches. He's helped me onto the samba train in Rio de Janeiro, lifted me out from snorkelling in the Red Sea, and gotten me up and down a boat in the Sundarbans.
But, as these reports point out, care and support are not a one-way street. It's not just about how I am supported in relation to my disability. All of us receive care, provide care, and practice self-care. Across many relationships we are doing more than one, and they need to be seen simultaneously.
It's like that in my travels with Tim. In each of the places I mentioned, he was visiting where I was living. Usually I was translating and organising. Neither of us would have gone on those trips without the other. Sometimes support means going on an adventure with your best friend.
Care in community
Care is not just the basis of the lives we want, but also the societies we want. It is essential to how we live and work, and in turn enables education, employment, and health. These reports make an important contribution to showing the issues our societies have to navigate to get there.
It's not just me that lives in an apartment building and doesn't know my neighbours. The atomisation of modern life separates us into these different units, each responsible for our own work and care. It takes a village to raise a child, but, not living in villages, many have to see what services they can pay for or how often family can visit. Somehow, we take this for granted, even when we imagine new forms of care.
The OHCHR report does mention the importance of “mobilizing community resources,” but adds, “particularly in low- and middle-income countries”. Indeed, low- and middle-income countries often need to find alternatives outside of government supports. But like my friend in Brazil, they already do, and usually in far more extensive ways than we do in high-income countries. Mobilising community resources is important everywhere, and has to be part of the futures we imagine. It can't be left to professionals alone.
Out with the old, in with the new
These reports know that it won't be easy to make these changes in a “global crisis in support and care” (OHCHR). Ageing populations and the structure of our economies mean “there are more persons who need support and care and fewer persons available to provide it” (OHCHR). As Áine wrote, community will be particularly important with the effects of the climate crisis.
Quinn points to the challenges that governments will face. Not least in the challenges is that of who will provide the care. Another is how to find new approaches while the existing systems are in place. In Quinn's words, governments “may need to continue supporting elements of an old paradigm alongside a new paradigm that will need time to establish itself.”
I don't think that's the best way to understand the changes that need to be made. Describing “traditional systems” is a helpful shorthand to understand the principles that structure systems and why they need to be changed. But stereotyping existing systems overlooks how they contain a diversity of approaches, and could have some roots of new systems.
As for “new” systems, they too often find themselves with old problems. Quinn does warn that reform can be a cover to reduce investment. More fundamentally it is dangerous to assume that principles we prefer inevitably get better results. They can too easily be subverted by organizations and implementation. The logic of the institution persists beyond the walls of the institution.
“Out of sight and off the public agenda”
Another way these reports don't speak to the whole story is by reducing challenges of care and support to questions of policy. It misses causes of the current situation and limits the destination we aim for.
We can only make a new society if people are on our side. In the US, Laura Mauldin attributes the care crisis to a crisis in caring: “we don’t value caregivers, because we don’t value the people they care for”. In the UK, a parliamentary review contrasts the number of people affected by adult social care with their indifference to it: “largely out of sight and off the public agenda until we need it.”
We are asking for changes in relationships between the government, communities, individuals and families, and the organizations that mediate these relationships. Writing about reform of care in the UK, Richard Humphries says we need to go beyond convincing the government:
“The goal of reformers should [be to] convince voters that investing in good social care, like universal health care, has great benefits for people and society. The predominant mindset that views care as a cost, a financial burden or a politically toxic problem that is just too difficult should be replaced by a recognition that all advanced countries depend on good social care as part of their economic and social infrastructure, in the same way that they depend on investments in education, skills and health care.”
What matters to us
I want to live a full life and be part of helping those I love get what they need. I don't know when I'll have higher support needs in daily life – it might be a year, it might be twenty. Maybe the robots will be ready. Maybe they'll be programmed with health and safety features that stop them doing what I need.
Right now, it seems like it might be easier to hack a care robot than improve social care policy and investment in the UK. It's a daunting context, where funding for adult social care has reduced by over 10% per person in less than ten years. We're in a policy “doom loop” where low expectations are confirmed by things not working.
But we also have sources of hope. Ralph and Katie is a beautiful television show about how we look after each other, with disabled people at the centre of the story. New initiatives explore new forms of support: Stay Up Late, for example, helps people go out dancing. And a vision of where we could go is set out by Social Care Future:
“We all want to live in the place we call home, with the people and things we love, in communities where we look out for one another, doing what matters to us.”
That's a vision that we can all share. After all, it's not just me that doesn't know when I'll have higher support needs. None of us do. As Alice Wong writes about a year with a dramatic increase in her own support needs:
“What I learned this year and what I’ve known in my bones during my entire 48 years on this planet is that nothing is certain, and that we must build a world that acknowledges our interdependence with one another so no one ever falls through the cracks.”
As we've found new forms of interdependence in our own lives, let's be part of making them in our societies. It's potentially the biggest contribution we as disabled people, and as a disability sector can make: a future with new ways of connecting with each other. Then we'll all be able to sleep better.
Many thanks, of course, to all those who have supported me, and continue to do so: my mother, Tim, and many many others.
Thanks to Tan Kuan Aw for the beautiful illustration of living together. And to Áine Kelly-Costello for insightful review and feedback. Áine suggested further reading, Just Care by Akemi Nishida, a book on the “messy entanglements of disability, dependency and desire”.
Thanks also to recent conversations about care with Anne, Gerard and Rachel.
I've been on twitter for maybe fifteen years and for most of that time I've been learning from Neil Crowther. His thoughts and resources have been a great influence on this subject. For longer pieces, Neil writes insightfully and movingly about care on Making Rights Make Sense.
This edition counts on support from Sightsavers, Light for the World and the people and organizations that read it.