Dr Lucy Series is a Wellcome senior research fellow and lecturer in law. Her research focuses on paradoxes of empowerment under mental capacity, social care and human rights law. This interest stems from her experiences working in social care services.
When I had my second child, J, his delivery went pretty badly wrong. I ended up very unwell, staying in hospital longer than I’d hoped and it was a rough time. I was being kept in by doctors because of badly controlled pain, but in a bizarre catch 22 a new midwife came on shift and was refusing to give me the prescribed medication because “I’m not allowed to discharge you on strong painkillers”. I ended up discharging myself late at night against medical advice because I was utterly miserable on the maternity wards . In this pretty awful time I have this shining memory of arriving home. My elder daughter was asleep in bed, but she’d made some ‘welcome home’ bunting for me, which she and her aunt had hung above the fireplace in the lounge. A bed was made up downstairs as I couldn’t get upstairs yet, covered in my favourite blankets and cushions. We ate mince pies by the fire, drank tea in my favourite mug, watched TV, and the cat took up residence next to me and the baby, as if to keep an eye on us both. My GP prescribed me pain medication and my partner made a drug chart to keep track of what I was taking. When the midwives visited they behaved as guests in my home; nobody demanded I keep the curtains open or ‘socialise’ with other mothers when I desperately needed to rest, and nobody woke me up to complete some task before the day shift arrived. I took pain meds when I needed them, ate when I was hungry, and didn’t live my life by an institutional clock. I was a bit of a mess, and I cried sometimes, but that was ok – I had privacy, and was amongst people who loved me and cared about me. Later that week I took a turn for the worse and was offered a choice between a hospital bed or riding it out with stronger medication at home; I chose the latter.
I have never spent so much time at home as over the past two years; I expect the same is probably true for many people. During the lockdowns, I was working on a book (I wrote more about it in my previous post). One of the key themes of the book was home, and how this is connected with our ideas around liberty – and deprivation of liberty.
During the lockdowns, several people suggested they were deprived of their liberty by being banned from leaving their homes without ‘reasonable excuse’. I think someone even began a test case on this, but dropped it when the regulations relaxed. The lockdowns were heavy, undeniably so, and a good deal heavier if your home was small, uncomfortable, overly crowded, without outdoor space, or you were living in situations that are hard to live in, or you weee (perhaps still are) so clinically extremely vulnerable you could not afford even the small “freedoms” of buying essentials in shops or exercising outdoors. I’ve never felt so policed in all my life; even today I sometimes catch myself thinking ‘am I allowed to be here?’ when walking in the woods or driving the scenic route home. To think that for a time it was illegal to read a book in the park or take a walk with friends! Yet most of us, those of us who were locked down in our homes, did continue to enjoy a level of freedom which in my view means we were not ‘deprived of our liberty’, although our general ‘liberties’ were heavily restricted nevertheless. However, the same cannot be said for those ‘locked in’ in institutional settings like care homes or hospitals, who were unable to enjoy even the everyday freedoms of the home (and many still are).
One of the questions that preoccupied me in writing the book is what makes a place a home? And how does this differ from an ‘institution’? And how do these distinctions show up in legal structures designed to regulate care services and liberty safeguards? In my book I call these frameworks the ‘law of institutions’ because they were originally designed to mitigate the worst excesses of institutional care, yet in the modern landscape of care they are troubled by increasingly blurred boundaries between ‘homes’ and ‘institutions’. Regulators have growing difficulty distinguishing ‘homes’ from ‘institutions’ in settings like supported living, and following Cheshire West, deprivation of liberty safeguards have broken loose of their conceptual anchors in regulating institutional models of care – from next year the Liberty Protection Safeguards will start to regulate even private homes as sites of detention.
Homes v institutions
The question of what distinguishes a home from an institution is important to care regulators, who regulate hospitals, care homes and other places that deliver accommodation ‘together with’ personal care differently to ‘private premises’, domestic spaces, homes. The difference can also carry huge consequences for welfare benefits, housing law, the rights of care workers. But in the book I argue that most fundamentally, homes and institutions are different kinds of jurisdictional space. Jurisdiction means the ‘power to speak the law’ – that is, to lay down, or interpret and apply, the rules. Homes are characterised by being quasi-sovereign jurisdictions for the home-dwellers themselves; they get to lay down the rules ordering the home. Institutions are characterised by being spaces governed under the jurisdiction of other authorities than the people dwelling in that place.
A good example of this is the case of the Rampton smokers (R (E) v Nottinghamshire Healthcare NHS Trust). Patients at Rampton hospital sought judicial review of a smoking ban imposed by the hospital. The national smoking ban, as you’ll probably remember if like me you were a smoker at that time, banned smoking in all indoor public places like pubs. But it included exemptions for homes, and also for ‘any premises where a person has his home’ – such as ‘hotels, care homes and prisons and other places where a person may be detained’. The patients (who were detained) argued that since they’d spent so many years in Rampton hospital, it had become their ‘home’, and therefore they should be allowed to smoke there. They prayed in aid the right to respect for home and private life under article 8 of the European Convention on Human Rights (ECHR). The judges had some sympathy with their situation, but ultimately the patients lost their case. The reasoning for this tells us something about how the judges viewed ‘institutions’ and ‘home’ as different kinds of jurisdictions:
‘Rampton is not the same as a private home and the distinction is of significance. It is a public institution, operated as a hospital under section 4 of the 2006 Act… The degree to which a person may expect freedom to do as he pleases and engage in personal and private activity will vary according to the nature of the accommodation in which he lives… If one assumes for the purposes of argument, that Baroness Hale is wrong and that any activity within a private home is protected from arbitrary interference, it does not follow that the same activities within a public hospital where patients are detained are similarly protected.
So institutions are spaces where the law permits ‘intrusions’ – perhaps even ‘arbitrary interferences’ – with activities that would be protected within the private world of the home. Within institutions, it is up to the institutional authorities to decide if they wish to interfere with such acts as smoking; they did not even need to justify this as a necessary or proportionate interference because the court held that article 8 was not even engaged by it (unlike a similar case in Scotland, which concerned patients’ ‘rights’ to eat junk food). Almost by definition, then, institutions are associated with the potential for arbitrary inferences by authorities or sometimes individual staff. Civic republicans call this domination, and there’s a growing literature on connections between domination and disability, incapacity and care institutions. Often this domination plays out through “micro” interferences (withholding painkillers, or tampons, or “privileges” like leave). Many stories and accounts of institutionalisation stress how these instances of “micro” domination can leave people feeling exposed, distressed, and diminished. It’s a good question – and one I have no optimistic answers to – whether the law of institutions can adequately penetrate and remedy this dynamic.
As Goffman put it in Asylums, his seminal ethnographic analysis of ‘total institutions’, the institution ‘belongs’ to the staff and:
minute segments of a person’s line of activity may be subjected to regulations and judgments by staff; the inmate’s life is penetrated by constant sanctioning interaction from above… Each specification robs the individual of an opportunity to balance his needs and objectives in a personally efficient way and opens up his fine of action to sanctions. The autonomy of the act itself is violated.
By contrast, at home, the law protects what the Court of Appeal in R (E) called an ‘inner circle’ (citing Niemietz v Germany):
Article 8 seeks to prevent intrusion by the state into the physical and private space which the concept of home represents. For example, what one eats or drinks may not be important, but that the state should dictate what a person eats or drinks in the privacy of a person’s own home would be regarded as deeply intrusive…
To give an example of the difference this can make, in the maternity hospital where I ended up after I had my daughter, I was told that I was not allowed to carry her in my arms when not in my cubicle. Instead I had to push her around in a wheeled cot (apparently in case she was knocked out of my arms by herds of doctors responding to emergency alarms). At home it would be simply unthinkable for a midwife to forbid me from holding my own child.
In researching the book, I ploughed through reams and reams of books and articles about the meaning of ‘home’ and the nature of ‘institutions’ and ‘institutional’ forms of care. These are huge research literatures, spanning several decades and many disciplines. I will spare you chapter, verse and full footnotes here (you can read it next year when the book is out). A lot of the research on the nature of ‘home’ is based on interviews with home-dwellers, often older people but sometimes younger disabled people or people who have lived in ‘institutions’ of various kinds (homeless shelters, psychiatric hospitals, etc), about what they understand ‘home’ to mean and what they value there. Some of the literature on caregiving ‘institutions’ – such as care homes, or even supported living – was ethnographic and observational, but some involved asking people how they felt about their living situation and whether they felt it was a home.
As I continued to read these vast literatures, I noticed that for almost every element that researchers identified as an important aspect of ‘home’ to at least some people, there was a polar opposite situation in what researchers (including Goffman) had characterised as a feature of an institution. For example, there is a cluster of characteristics which socio-legal scholar Lorna Fox O’Mahoney calls ‘home as territory’, which are concerned with whether one enjoys a ‘locus of control’, a level of autonomy, privacy and security unavailable elsewhere. In contrast, institutional life is characterised by a loss of autonomy and a loss of privacy. The institution orders both space (“patients aren’t allowed in this room”, “patients must use this toilet”, “bed curtains open in the daytime”) and time (“you’ll have to wait until the day shift arrives for your tramadol”, “lights out at 10.30pm”). They also often betoken a loss of ‘security’ in the sense that one’s body or possessions might be touched or otherwise interfered with without consent, or in ways that make one feel unsafe. Indeed, it was one such event that precipitated my hasty departure from the hospital that night. And matters are much worse on mental health wards.
Now, you might be thinking at this point: not all homes. And of course you are right. Some people do not enjoy a safe and secure home space, nor privacy, nor autonomy. Sometimes this is because they are young or have care needs (I’ll come back to this) and sometimes this is because their experience of home is – to say the least – non-ideal. These conceptualisations of home are ideals, they are what we want home to be, but it is not necessarily always the case. Strikingly, in one study Noga Avni maps the experiences of women who have experienced domestic violence and what we would now call coercive control onto Goffman’s description of ‘total institutions’, and argues that home can become akin to a ‘total institution’ in these circumstances.
Several sources on meanings of home emphasise what John O’Brien (an early pioneer in person centred planning and supported living) called ‘control of the threshold’. This means controlling the boundary around your home, who may enter and who may (or must) leave. A home is a place where you can ‘ward off intruders’, you can decide who may enter your home and ask someone to leave. Those who enter are culturally expected to observe guest codes of conduct. In contrast, institutions are spaces where institutional authorities control the boundaries; they decide who may enter (whether staff, patients or visitors), and they control who may leave (on the maternity wards the doors were locked and we had to ask to leave).
But home is not only about these classical ‘liberty’ rights. It is also, as researchers have stressed, about our connections with friends and family. It is about who we share our home with and extending hospitality to others. For some of us, it is about being interconnected with our neighbourhood, our local community. It is about belonging, and rootedness. This social home also stands in contrast with characterisations of ‘institutions’ – which emphasise rupture from a place of belonging and rootedness, disconnection from pre-existing relationships, and the imposition of a hierarchical social ordering whereby staff and residents occupy differentiated strata. Most institution residents do not get to choose who they live with. They are unlikely to be able to offer hospitality to guests as one might at home; this is especially true following covid. However even before covid, most care home residents could not simply invite someone to stay the night, or throw a party for their friends, or at least not without reams of paperwork, risk assessments and institutional ‘permissions’. My guess is this is also true for most supported living services, although these were less badly hammered by covid visiting restrictions because they could not be imposed on a home space in the same way. Another factor in my leaving the ward that night was that the maternity hospital had decided to ban partner visits again (because of covid). Visits from my partner were the thread linking me to my sanity at that point, and the ward staff had not even told us about this change of policy – just put up a sign on the external door for our partners to read as they left! Whatever the public health rights and wrongs of this, the point is that within institutional spaces our relations to others are easily discarded, subject to other institutional imperatives, in a way that is less tolerated in the home. Institutions make individuals of us, but not in a good way.
And then there is what Fox calls home as a centre for self-identity, as a place where we can both express our identity and where we are able to flourish. Hilde Lindemann expresses this beautifully in a paper on caring for people living with dementia: ‘Our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are’. (See also this piece by Neil Crowther). Sometimes this is about the aesthetics – for example, I learned that prisons and immigration detention centres are deliberately designed to be bare and dismal places to emphasise that these are not homes. I learned that there is an entire industry developed around developing care institutions that look ‘homelike’ – a phenomenon known as ‘artification’. Home is not the same as being ‘homely’ or ‘homelike’ – it is not about murals or pictures or wallpaper or knick-knacks, tablecloths and doilies. It is not even about surrounding someone by their own possessions (“personalising” their bedroom). More fundamentally, home is also about our relationships with our material environment, about practices of making home. Gardening, cooking, tidying, or even making a mess are ways of making home. We learn this from a tremendously early age – how to order our spaces, to create our own comforts and feelings of safety, to arrange things as we like them. Even my infant son takes pleasure in ‘sorting’ his toys, passing me objects he thinks belong to me (mainly tissues, but also any bits of cloth or my phone). My daughter loves to build dens, even to tidy her room! This material interaction with our living spaces is more than merely aesthetic. As Churchill famously said in relation to the reconstruction of the Houses of Parliament after the Blitz: ‘we shape our dwellings and afterwards our dwellings shape us.’
Homes as decision spaces?
In the book, I argue that one way of conceptualising the differences between homes and institutions, is as different kinds of decision space. Homes are spaces that are associated with rich opportunities for decision making (or, alternatively, exercising control) across a number of domains that are seen as critical for the flourishing of self and identity. This is most obvious for the cluster of values Fox calls ‘home as territory’, but if we unpick the meanings of the ‘social home’ and home as a ‘centre for self-identity’ we find nested within this opportunities to make choices over who we live with, how we socialise, how we order and interact with our environment. These are micro-choices that individually are probably not so important, but cumulatively they are central to our sense of both being at home, and our very identities. The issue is less about the ‘right to smoke’ or a ‘right to eat junk food’, for example, than what it means to live in an environment where a third party can actively prevent you from smoking or control what you eat.
Institutions are spaces that are ‘virtually decision free environments’, in the words of Jane Langer and Judith Rodin, two pioneers of work on the importance of ‘control’ for the health and wellbeing of care recipients. Langer and Rodin showed that denying people decisions led to much worse outcomes for health and wellbeing – one study even found that care home residents denied everyday choices died earlier than those given more choices and ‘responsibilities’ over their everyday lives. There is a huge literature on this in relation to older adults, although rather less in relation to people with learning disabilities or autism. My guess is that for autistic people in particular feelings of safety and control over one’s environment are acutely important though. The damage done to the self by institutional life was dubbed ‘mortification of the self’ by Goffman, ‘depersonalisation’ by Peter Townsend, and is also sometimes known as ‘institutionalisation’.
Viewing home as a decision space can help us make sense of the harms of institutions. The philosopher Ian Hacking wove together Goffman’s work on total institutions, with Foucault’s writings on subjectivity and Sartre’s existentialism, concluding that even the kinds of micro-choices that are vulnerable within institutional settings are integral to self and identity:
We push our lives through a thicket in which the stern trunks of determinism are entangled in the twisting vines of chance. Still, you can choose what you can do, under the circumstances. The choices that you make, situated in the thicket, are what formed you and continue to form you.
Hacking, ‘Between Michel Foucault and Erving Goffman: between discourse in the abstract and face-to-face interaction’
In the book I wrote: ‘Hacking’s analysis implies that the ‘mortifying’ effects of institutions result not only from geographical confinement, but confinement within a very limited decision space, where even the most mundane and everyday choices – micro-opportunities for the expression and cultivation of identity – are constrained. Far from being trivial or mundane, the erosion of everyday choices such as when to get up or what to eat betokens dire constraints upon possibilities for being and the flourishing of identity and self.’
There is another, related, way to characterise the differences between institutions and homes – a kind of shorthand. Institutions are places that have goals, or agendas, for their inmates – they are, as Goffman put it – ‘forcing houses for changing people’. For example, an institutional agenda might be to ‘treat’, ‘cure’ or ‘rehabilitate’ people; to keep them safe, to keep others safe. More progressive sounding institutions – including some supported living services – might describe themselves in terms of making people more ‘independent’. If the goal of ‘independence’ is the institution’s and not the person’s own goal, be in no doubt this is an institutional environment and not a home. By contrast a home is a space where we can be ourselves, make ourselves, that supports our identity. This is complicated of course, and our identities are never fully our own. There is no inner source of authenticity that we can tap – we are all unique points in a complex relational, social and spatial constellations. Institutions can be viewed as stripping away our messy yet unique social ecosystems, imposing a socio-cultural monoculture and destroying our natural habitat.
What about those who ‘can’t decide’?
What indeed. This is the question it always comes back to. But before we go there, let me clarify something: institutions deny people the kinds of ‘choices’ taken for granted in a home long before we get to questions of ‘capacity to decide’. In the example I’ve used here, none of my experiences of the maternity hospital were connected with an alleged lack of capacity, they were simply how the hospital was run. And for some of that, fair enough – hospitals need certain rules and restrictions and routines to safely achieve their goal of treatment. But for social care, which isn’t about treatment but about enabling longer term living arrangements, the ethical calculus around institutional dynamics is different. I love the way Social Care Future characterise it: “we all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us”.
It is tenable to live with short term loss of home, but not one’s entire life or one’s remaining years on this earth. Yet many social care setting are run as institutions. Care homes operate rules around admissions, space, time, visits, and so on that have nothing to do with capacity; they are simply there to enable the institution to function as it needs to, to satisfy its own agenda and that of others (commissioners, regulators, families etc). Some supported living services can look a lot like this too. So the first point to note is that not everything is about capacity. Some choices (many choices) are either denied or never made available because of economic constraints, broader institutional imperatives, austerity, etc.
Nevertheless, the reality is that ‘incapacity’ can create dynamics that closely track the properties of ‘institutions’. Compare, for example, the ‘acid test’ of whether a person is deprived of their liberty following Cheshire West – whether they are subject to ‘continuous supervision and control’, and ‘not free to leave’ – with Goffman’s description of institution as places where a person’s life ‘is penetrated by constant sanctioning interaction from above’ and where the boundaries are controlled by staff. In the post-carceral era, where we have closed most of the very large institutions and most people live ‘in the community’, these dynamics are more complicated. They can occur in settings that purport to be providing homes, for example in ‘group homes’ or ‘supported living’. In the post-carceral era ‘control’ is not exercised through a monolithic institutional authority (if indeed it ever was) but through what Beverley Clough, in her recent book calls an ‘assemblage’ of different actors and forces (human and non-human), in which the law is only one component, through ‘networks of power’ and relational processes.
So does this mean, then, that ‘incapacity’ to make decisions means a person is forever destined to some form of institutionalisation wherever and however they live, and however they are supported to live their lives? If one takes ‘incapacity’ as a binary cut-off, beyond which a person is ‘incapable’ of making decisions and others assume total control of decision making on their behalf – the technical legal reality of the Mental Capacity Act 2005 – then yes, I think there is truth in this suggestion. In the book I explore these connections between institutionalisation and incapacity in more detail. However, I think we need to start by unpicking ‘incapacity’ and broadening our understanding of decision making.
The UN Convention on the Rights of Persons with Disabilities (CRPD) has prompted work on new ways of understanding decision making and legal capacity, which some call a ‘new paradigm’, which anchor decisions made by, with or on behalf of a person in their ‘will and preferences’. Some call these ‘supported decisions’, to distinguish them from systems of ‘substitute decision making’ which adopt alternative standards – such as ‘best interests’ – which create more space for imposing decisions, outcomes and living arrangements, which conflict with the person’s expressed wishes and preferences or which do not require close engagement and analysis with our best guess at what we think they want. I’ve written more about this here and here.
It is possible under the Mental Capacity Act 2005 to support a person’s own ‘decisions’ up to a point, and then to prioritise a person’s ‘wishes and feelings’ (the language used in that Act) when making substitute decisions on their behalf. And many people do this. In my book I call professionals who work in this way ‘empowerment entrepreneurs’, and a lot of them see the Mental Capacity Act and even the deprivation of liberty safeguards as great tools to challenge other more restrictive or paternalistic ways of doing things. In other words, paradoxically, they are expanding the potential for home by formally detaining them. But this isn’t always the case, and the Act does not require it to always be the case. There is enormous latitude in ‘best interests’ to adopt, or to ignore, what we think a person would want us to do, and DoLS can sometimes reinforce rather than resist institutional dynamics.
To return to the dilemma of home as a decision space, the question has to become who and what guides the decisions that are made available, and how they are made. Is this anchored in our best understanding of the person and their wishes? Sometimes this requires quite an act of interpretation – I give some examples in the book. But even so, there’s a world of difference between trying our best to ‘interpret’ from a person’s behaviour what makes them happy, what it is they want, who they are comfortable with having in their space, how they like their space ordered, adopting the routines that seem to suit them, than imposing a set of rules and routines that are driven by institutional imperatives.
Questions of home
I want to leave you with a set of questions – or provocations – to consider whether a space is more like a ‘home’ or an ‘institution’, a kind of home/institution mapping exercise if you like. In the spider diagram I’ve completed this for my experiences of my actual home and the maternity hospital.
As you’ll see, I’ve used a sliding scale – because no experience of home ever fully lives up to these ideals and sometimes one element can work against the other, for example, if you have young children then you probably don’t experience a whole lot of privacy any more. There are also liminal spaces that capture aspects of home and institutions.
Have a look, see what you think, and if you’re answering this in connection with someone who “can’t decide”, have a think about who is making these decisions for them, and on what basis.
Do you make the rules in your living space, or does someone else?
How much choice and control do you have over everyday decisions (for example, what you eat for breakfast)?
How much privacy do you enjoy, free from the gaze of those you do not live with? (Do people write notes about you in your own home?)
How much control do you have over your daily rhythms (for example, what time you get up, eat, go to bed etc)?
How much freedom do you have to move around your living space? (Are there places that you cannot go without permission or where you require somebody to let you in?)
Do you have control over who touches your body or your possessions in your living space? (Are you ever restrained? Do other people touch or control your possessions in ways you have not authorised?)
Do you have control of the threshold? (Can you decide who enters the building and ask them to leave? Can you come and go freely? Do people who enter the building observe ‘guest codes’ of behaviour?)
Are you able to freely welcome friends and family for visits, or to stay? Could you throw a party if you wanted to?
Do you choose who you live with?
Does your home reflect your identity? (For example, were you able to decorate your living space, choose the furnishings, can you decide how messy or tidy it is?)
Does your home support your identity? (Does your living arrangement support you to be who you want to be, or does it try to make you different in some way?)
These questions are a provocation, not a systematic test. However, such a test might be a useful tool to reorient ourselves in what I believe should be the purpose of supported housing and social care. A lot of these questions mirror quite closely those contained in the Reach Standards for supported living. This is no coincidence really. I haven’t based these questions on the Reach Standards, but the Reach Standards were developed by people influenced by a radical vision: people with learning disabilities living in ordinary homes, on ordinary streets. Their analysis – like mine – began by thinking about home as more than mere housing, as more than a regulatory category. Supported living as more than ‘premises which are specifically designed or adapted for occupation by adults with needs for care and support to enable them to live as independently as possible’, and ‘independence’ as something more than living with minimal support or away from one’s family, more akin to the radical right to independent living envisaged by the disabled people’s movement.