Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Friday, 23 November 2012

Like water dripping on stone

Image by Hans
The CQC published its State of Care Report today.  In it, on pages 104-5, is a sneak preview of a brilliant piece of work they're doing on restrictive practices in health and social care institutions.  Restrictive practices were one of the concerns which emerged from CQC's thematic study of learning disabilities services, conducted over the last year in the wake of Winterbourne View.  In these reports CQC describe the following concerns about restrictive practices in care services:

  • Physical restraint: According to Emerson's statistical breakdown of the CQC thematic study*, CQC found only 61% of assessment and treatment centres, only 54% of secure units, and 71% of residential care homes were compliant with standards regarding restraint.  In the State of Care Report CQC raised concerns about how decisions about restraint were being accounted for and monitored.  There was a lack of information about how frequently restraint was being used, what had triggered its use and what learning had come out of that event, they commented ' It was rarely evident that staff were working with the person and their family to explore ways to avoid crisis and ways that the person would prefer to be cared for during a crisis'.
  • Seclusion and segregation: CQC raised concerns about poor recording and monitoring of the use of seclusion, made worse by euphemistic language which concealed its use (I've blogged about this before in the context of the infamous 'Blue Room' case).  Seclusion appears to have been a particular concern picked up on by Mental Health Act Commissioners.  I do hope that ordinary compliance inspectors visiting care services are alert to this as well, as we saw in the Blue Room case that Ofsted certainly weren't clued up to it and had appeared to endorse its use without any proper safeguards.  Certainly I encountered the use of seclusion, unrecognised as such, in services for people with learning disabilities.  In one service staff used to put residents in their rooms if they "needed time out" (read: staff were knackered on 13 hour shifts), and would sit with their backs against the residents' door (they opened into the hallway), and brace their feet against the other side of the corridor whilst they read magazines and chatted with others down the hallway.  No locks.  No records.  No traces when inspectors came to call.
  • ‘Blanket rules’ governing life in a ward, unit or care home: CQC observed the application of blanket rules in all kinds of care setting.  There were rules about access (to communal rooms, gardens, kitchens, one's own bedroom), rules about when, whether and what residents could eat, drink, smoke, and so on.  CQC observed a range of sanctions for those who broke the rules, as one patient described 'If you do not do x then you will be refused section 17 leave, cigarette time or have your own music removed.'  CQC comment:
    Such rules can rarely be justified in terms of a person’s individual care plan. They were often explained as having arisen as a response to a particular incident, but may have continued long after the event.Blanket rules can be triggers for challenging behaviour. They may be for the convenience of staff, or responses to concerns about the unhealthy choices made by some patients, but their effect is to limit autonomy and make people feel overly controlled or even unable to exercise their own choices.
  • Poor staff-patient relationships: CQC raised a number of concerns about staff-patient relationships, including staff speaking to patients in a derogatory way, staff 'exercising petty and arbitrary controls over diet, smoking, privacy and contact with family and friends' and so on.  CQC identified several factors as contributing to this: staffing shortages, poor training and supervision, geographical isolation and introspective cultures, weak leadership, and the separation of staff and management (incidentally, in the service I just described where staff would routinely seclude residents, management were "on site" but in a different building, tapping away at their computers and selling placements to commissioners, but had no routine presence in the building where residents lived).
I am very glad CQC are raising these concerns, and we can look forward to a more detailed and reflective piece of work in the new year on the issue of restrictive practices.  What CQC are describing, however, is nothing new.  These concerns were raised repeatedly in earlier national audits of healthcare facilities for people with learning disabilities (including A Life Like No Other and its follow up report in 2009).  To the best of my knowledge, nobody has systematically studied these restrictive practices in the care of other groups, for example older adults (although, CSCI did a qualitative study on the use of restraint for older people which had some pretty scary findings).  For some inexplicable reason, given that serious institutional abuse has been found in residential care and supported living settings as well as healthcare settings, everybody seems to get hooked on healthcare settings and overlook institutionalised restrictions in other places.  The police report, Operation Apple, into supported living services in Cornwall in 2009, found services where the taps and light switches had been removed to stop residents from using them, residents were locked into their rooms at night (so they couldn't even access the bathroom), CCTV was used within the building for staff to monitor the residents, restraint was used to administer medications, residents were given cold showers and rather ominously the report states that there were 'concerns that residents were given excessive numbers of enemas' (without any discussion of consent...).  So, not exactly care in line with the Reach Standards, then.  

Once you start looking for them, restrictive practices can be found in all kinds of places where you might not expect to find them.  I worked for a while on an intentional community that provided support to people with learning disabilities.  The kind of place where everybody ate Organic food, made felt, laminated leaves and spent the afternoons on the farm (they also had various wild and whacky beliefs about microwaves and moonbeams or something). That place had more rules and restrictions than bog standard care services, for example bans on television watching except prescribed programs on a Friday (managers, though, were allowed to bend the rules when they felt like it).  Some residents were desperate for the ordinary trappings of the modern age - mobile phones, trashy magazines, boozing, consumer culture - but these didn't fit so nicely into the wholesome pottery-and-apple-pressing ideology of the place.  The commissioners, the regulators, the parents loved that place, it fitted so nicely into their ideals of the desexualised, infantilised, homecrafts-loving person with learning disabilities.  Funnily enough, the reason I and several other volunteers left that place was due to a massive kerfuffle that broke out between the older staff (the staff that still believed autism was caused by frigid mothers), and younger staff that wanted to introduce person centred planning.

These concerns about restrictions are not bounded by the legal or policy definition of a service, they are characterized by the practices of staff themselves.  As Angus and colleagues found, even home care staff can import the logics of the institution into your living room.  [Edit 10/12/2012: an excellent report by Family Mosaic has just been published, describing finding such practices in 'supported living' services.  I really recommend taking a look at it.]  As Thomas Townshend could tell you, this is a set of problems as old as institutional care itself, and incredibly difficult to eradicate.  As Nick Hardwick, the Chief Inspector of Prisons, noted in a brilliant talk at a CQC event on restrictive practices - the problem with closed institutions is not just that outsiders cannot see what is going on - the walls also restrict the vision of staff and residents within.  What shocks us on the page in a CQC report very quickly becomes 'normal', 'natural', just the way things are and should be.

Why we should take these concerns seriously

Goffman, and an array of sociologists, psychologists and policy researchers walking in his footsteps, have examined the way institutions and their associated practices change people, they "mortify" the residents and they change the staff as well.  It is very hard to avoid becoming swallowed up by the cultures of these places.        There are vast literatures containing insider descriptions of these places, and what it does to a person's sense of themselves.  The following examples are just those I had readily to hand:
...I was placed amongst strangers, without introduction, explanation or exhortation.Instead of great scrupulousness being observed in depriving me of my liberty or privilege,and of the exercise of so much choice and judgment as might be conceded to me with safety – on the just ground, that for the safety of society my most valuable rights were already taken away – on every occasion, in every dispute, in every argument,the assumed premise immediately acted upon was that I was to yield, my desires were to be set aside, my few remaining privileges to be infringed upon for the convenience of others.
John Perceval (1840)
A Narrative of the Treatment Experienced by a Gentleman, During a State of Mental Derangement; Designed to Explain the Causes and the Nature of Insanity,and to Expose the  Injudicious Conduct Pursued Towards Many Unfortunate Sufferers Under That Calamity 
Cited by the Mental Health Act Commission's 2003 report, Placed Amongst Strangers

'Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you... They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant — even when you’re pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can’t be calculated.'
'To survive in a place like that something inside you has to break. It’s impossible to fully explain to someone who hasn’t been in that position. Something inside you has to die. And it doesn’t die any less because you got one of the “good” (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.  The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.'
Amanda Baggs (2012) What Makes Institutions Bad?
'I am not comparing Meriwether to the gulag.  And yet, as any Sozhenitsyn will tell you, watching is a form of torture.  Being watched is a soft violation that grows into a harder one with every passing day.  Like dripping water on a stone, the eyes of other people wear you down, slowly, invasively.  They leave a hole.'
'This is something that we in the free world, especially Americans, are not used to.  It has never happened to most of us.  On the contrary, we're spoiled.  We're used to saying what we like, and suffering few or no consequences as a result.  We're used to knowing, as surely as we know our own names, that we have rights.   And it's not that patients in places like Meriwether don't have rights.  They do.  It's just that - and I can't overemphasize this enough - it feels as if you don't have rights when something as simple as coming and going, or smoking a cigarette, or seeing the people you love is taken out of your control  because your mind, whether it actually is or not, is thought to be diseased.'
Norah Vincent (2010) Voluntary Madness (p47, p89)

Perhaps you are the kind of person who is not convinced by sociology or biography that deprivation of such "trivial" freedoms such as smoking, eating bad food, possessing a mobile phone, drinking water from a tap when you feel like it, or being able to watch telly or go to the bathroom without asking is a big deal.  Perhaps you will be more convinced by a study by Boyle (2005), which found that 'mental ill-health effects were associated less with physical impairments than with the restrictions placed on the older person's decisional autonomy, and that long-term care environments that constrain the older person's autonomy contribute to the development of depression'.  So loss of autonomy contributes towards one of the most costly and endemic health problems of our age, depression.  In a classic study, Elaine Langer (1976) found that giving people freedom of choice and a degree of responsibility led to measurable improvements in 'alertness, active participation, and a general sense of well-being' of the residents of institutions.  What was their freedom of choice and responsibility?  The choice and responsibility to care for a house plant, as compared with the control group where the staff cared for the plant.  Here's what that study makes me ponder: how deprived of choices and freedoms do you have to be where caring for a pot plant measurably improves your quality of life?

The place of law?

As some of you will know, I am not a lawyer.  I ended up researching this area of law because of my experiences working in services, and those of friends and family who used or were detained in health and social care services.  Less than five years ago I was pondering what to do about a service user, an older person who was deeply depressed, who had revealed to a colleague that she had symptoms that suggested she had a very serious physical illness.  The woman in question refused to see a doctor, saying she wanted to die as nobody cared about her.  We were discussing whether we could just call a doctor anyway (see how these cultures get under your skin?).  We phoned her social worker, a rather terse and grumpy guy who'd seen all the fads and changes of the past decades.  He gave us the most enormous ticking off down the phone for even contemplating calling her doctor without her consent.  "Haven't you heard", he thundered, "of the Mental Capacity Act?! She has the right to say no!"  We hadn't.  We had now.  Two things followed from this telephone call.  The first, we realised that we had to work with this lady to give her what she needed, and what she clearly needed before anything else was to feel cared about (as opposed to cared for).  So we moved heaven and earth to get her the same carers every day on the rota (if you've ever worked in home care, you'll know what a feat this can be), carers she liked and who liked her, who would sit and chat and ask how she was.  The carers would tell her (horror of horrors in a culture of cold and chilly "professional boundaries") that they liked her, cared about her, were worried about her.  Eventually she consented to see the community matron, to get treatment, and eventually she even stopped swearing at me down the phone.

The second thing that happened after that phone call, was my current obsession with the Mental Capacity Act 2005.  Could this be the silver bullet, I wondered, that would cause care staff to wonder whether perhaps they shouldn't be imposing smoking and bad food bans, secluding patients, restraining patients, willy nilly, like they were answerable to nobody in their tiny empires?

Five years on, I don't think it is.  For all the parading of the Act as 'empowering' and 'autonomy promoting' and so on, for all its fine 'essential principles', when you actually dig down deep into the Act and look at its mechanism it is striking how few tools (as opposed to fine words) it provides to challenge such restrictions.  And in some respects the Act offers new language, new justifications, that can be uncritically and carelessly deployed to justify restrictions (just like that monolithic concept, the 'duty of care') .  The Act provides those providing care and treatment with a defence, it creates no offence of restraining, confining, coercing, or otherwise restricting a person's choices and freedoms.  The code of practice may well say the Act applies to all decisions, big or small, from surgery to what a person eats for breakfast, but here's the thing: it does not create any offence of denying a person a choice of what they eat for breakfast.  Sure, restraining somebody without regard to the MCA  might be an assault (as police officers recently learned), but equally the courts which are less familiar with the MCA have passed off things like tying a person with dementia to a chair with a sheet as just part of the ordinary and acceptable rough and tumble of care.  You might be depriving a person of their liberty if you routinely shut them in a room - although, who knows these days.

But what about telling somebody they can't smoke, can't eat what they like, can't drink, and so on?  Is that any kind of an offence which would require the defence of the MCA?  For some matters, particularly those connected with contact with friends and family, the courts (and the Court of Protection in particular) have readily acknowledged that Article 8 is engaged.  But what about those restrictive practices that don't upset your mum, because actually she would quite like it if you lost a bit of weight and stopped smoking?  I think it is much less clear that these issues are legal issues in any ordinary sense of the word.  Don't get me wrong, I think given the heavy consequences of controlling the microdetails of a person's existence, that these should be legally salient matters.  But the more you delve into the case law, the more you see a legal system that just doesn't want to know.  That doesn't want to be troubled by these things.  A legal culture that doesn't really regard them as serious enough to warrant the scrutiny of the law.  

You would think, and hope, that these are straightforwardly Article 8 matters.  That seems to be the view of the CQC and also the Equality and Human Rights Commission in their guide to equality and human rights in the essential standards for care.  Yet when you start trying to pin down the basis for this in case law, it seems to slip out of reach.  There have been very, very few cases indeed about these types of restrictions.  In fact, I can think of only two.  The first is a 2009 case where patients at Rampton Hospital tried to challenge a smoking ban imposed on them which, as detained patients, meant a total smoking ban as there was no place they could sneak off to and enjoy a fag.  A majority in the Court of Appeal made clear their view that this kind of thing wasn't really what Article 8 was about.  They held that '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' [41].  The Court of Appeal then went on to hold that a patient in a secure hospital:
...does not lose all right to a private life but  the  nature  of  that  life  and  the  activities  which  he may  pursue  are  seriously restricted  and  always  overlooked.  No  patient  can  choose  freely  what  he  eats  or drinks.  That  is  not  simply  because  restrictions  can  be  justified,  but  more fundamentally because of the nature of the institution in which he eats and drinks. Even if, pace Baroness Hale, a person may do as he pleases in his own home, no-one can expect such freedom when detained in a secure hospital. [291]
Let us just think about what Lord Clarke and Lord Justice Moses are saying there, for a second.  Firstly, the implication is that admission to an institution inevitably means that one's choices and freedoms are restricted, even around matters like what a person eats or drinks.  Well, let's just throw person-centre care out of the window, shall we?  Secondly, this is not a question of whether the restrictions can be justified, but just because that's the way things are in an institution.  In that paragraph, Lord Clarke and Lord Justice Moses simply hand over those freedoms which they, and most of the rest of us, take for granted in going about their daily lives and say to those operating such institutions "do what you like with these freedoms, we won't ask why and we won't expect you to justify it".  The ruling concerned a secure hospital, but how far might it be relevant to other settings?  In several places they seem to distinguish secure hospitals from care homes (the 2007 smoking ban specifically excluded care homes), although it is not clear that this particular reasoning would not be applied there.  Other healthcare settings are not distinguished at all.  In any case, many social care settings would not come under the scope of the Human Rights Act, and so it would be hard to rely upon Article 8 directly in such settings.

Meanwhile in a Scottish case where hospital authorities banned takeaways and visitors bringing food gifts to patients , Lady Dorrian had this to say:
This case does not simply deal with a trivial aspect of everyday life. For inmates of the state hospital, the freedom to receive food parcels from visitors and to make purchases from an external source are some of the few areas in which they may exercise some sort of personal autonomy or choice. I have reached the conclusion that a person's right to choose what they eat and drink is a matter in respect of which article 8 is engaged. If that choice is interfered with, it must be justified.
It is a Scottish case.  These are obiter remarks.  It is explicitly contradicting the reasoning of the majority in the Rampton smoking case.  However, these remarks of Lady Dorrian give me hope that some day the courts of England and Wales might be prepared to take another look at these matters.

Might an accumulation of such restrictions amount to a total deprivation of liberty?  In Cheshire West and Chester Council v P Munby LJ is clearly trying to take us away from 'a minute examination of all the facts in enormous detail' towards an analysis which is less attentive to individual restrictions, and can be defined by reference to the availability of alternative settings.  Again one has a sense of a legal system trying to avoid dealing with such 'trivial' matters, of refusing to impose a framework which might require the justification of such restrictions.   And yet, from my research and conversations with Best Interests Assessors, some are using the DOLS to do remarkable and transformative work at challenging these restrictions, asking why is this person not allowed to do that?  why is this person sedated/secluded/restrained in this way?  And working with providers to find alternatives.  I wouldn't make the claim that all DOLS teams are working this way, but some really are, and it's very impressive stuff.

Aside from DOLS, what means might a person have to challenge such restrictive practices, then?  Well, there's the dim and distant prospect of litigation.  There are complaints mechanisms, although they are heavily, heavily underused by these very populations and they are also pretty inaccessible to a person who would rely upon the self-same staff who are imposing the restrictions to make that phone call, write that letter.  Advocacy is vital, but increasingly unavailable.  So, that leaves us with the CQC then.  Let us hope they are able to promote some shifts in thinking and practice.  But laudable though this aim is, and seriously though they seem to be taking it, I can't help but wonder how successful they will be in solving a problem that spans centuries and continents.  But what else can we do than just keep drip, drip, dripping away at these practices, in the hope we wear a hole in them before they wear too many holes in too many others?

[Edit 27/11/2012: Mark Neary has written a fantastic response to this piece, describing the institution that this son, Steven, was detained in for a year.  It's well worth a read for a very good example of the kinds of restrictions that might not, on the face of things, ring alarm bells but which have a profound impact on a person's quality of life and their relationships.]

*It should be noted that the statistical analysis of CQC's data by Emerson is even more troubling than that presented by CQC itself.  Whereas CQC report said that only around half of services inspected were compliant with both standards inspected against ("Care and welfare of people who use services" and "Safeguarding people who use services from the risk of abuse") this was, amazingly, a rather positive gloss on the data.  In fact, according to Emerson:
Overall, less than one in four of the 145 units inspected were fully compliant (with no minor concerns raised) with both Outcomes 4 (Care and Welfare) and 7 (Safeguarding) of the inspection framework.Only one in seven of the current residents of the 145 units for which information was available were being supported in units that were compliant with both Outcomes 4 and 7.
Presumably CQC had just collapsed together the compliance data, and not considered compliance with each standard as an interlocking Venn diagram, where only a small number of locations, and an even small number of service users, enjoyed services which were compliant with both standards.  And bear in mind folks that CQC were only assessing against two outcomes out of a possible sixteen...

6 comments:

  1. Lucy, brilliant blog, had me shouting "YES !" out loud, but your link to Emerson's study didn't work.
    Ronnie, an MHA Administrator

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    1. Thanks Ronnie! Try this link: http://www.ndti.org.uk/uploads/files/IHAL2012-05_CQCLDreview.pdf

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  2. Stupid rules make any environment oppressive to live in. The boarding school I was in (a special school, now closed) had a long list of them -- no going through this door or using that staircase (this necessitated a lengthy detour to get from the classrooms at one end to the outbuildings right next to them, through a poorly-observed back entrance which was a bully trap), nobody in the dorm areas during the day, no jeans, and so on. Some of these were lifted when I was there as they were entirely unnecessary, but looking back they did contribute to an atmosphere of pettiness and gave an opportunity for 'grassing'. I also think that in a boarding school situation, rules that resemble school rules should be lifted during the evenings and weekends as the school also functions as a home.

    I've also heard of a situation in a prison where a man was caught fondling his daughter during visits while sitting her on his lap, as a result of which all prisoners were banned from that kind of contact - it all had to be across-the-table, clearly visible contact. Obviously the rule could have been applied to that one prisoner, but there was no need to apply it to all, as if all male prisoners are sex offenders.

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    1. Thanks to Matthew and anonymous for your thought provoking comments. To Matthew - I don't know if you've read Goffman's Asylums, but it talks about an array of different types of 'total institution' - of which Boarding Schools are one. Convents, army barracks - even cruise liners, can take on these characteristics. There is a difference, I think, between regimes we willingly submit to and those which are imposed upon us. If you ever have the time, I really recommend reading the book, it's well written and contains lots of lovely nuggets and descriptions.

      Here's a quote from another writer I really like, Philip Pettit, describing his time in a seminary:

      'This idea of freedom [as non-domination] immediately caught my imagination. Perhaps that was because it made sense of my experience when, intending to be a priest, I had spent years in establishments that I learned later to describe, in Erving Goffman's phrase, as total institutions. While such schools and seminaries offered wonderful opportunities for study and comradeship, they certainly did not teach us to look the authorities in the eye, confident of knowing where we stood and of not being subject to capricious judgement. On the contrary, they communicated a sense of systematic vulnerability and exposure to the governing will, sometimes even making a virtue of the practice. I had come to rail against the subordination inherent in such training, and the notion of freedom as non-domination offered a satisfying way of explaining what was wrong with it. Our formation had tried to cultivate unfreedom; it was designed to make students passive, unassertive, unsure of where they stood. Mary Wollstonecraft wrote in the 1790s of the way that women's subordination turned them into creatures who learned to bow and scrape, and to achieve their ends by ingratiation. She might have been writing of us." PETTIT, P. (1997) Republicanism: A Theory of Freedom and Government (Oxford: Oxford University Press).(p viii)

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  3. Thank you Lucy for another thought provoking blog. It has made us reassess the way are working in our very small home to see if we could improve or alter what we are doing to ensure each person is making their own choices. Its the 'things mother would like'choices you mention which we feel we may be guilty of making on behalf of people on occasions so we are thinking carefully on how to improve on that.
    One of my worries on this is that I have seen people living in sometimes quite dire conditions because, we are told, unless they ask their support worker to help them clean/tidy/sort out the off food in the fridge/advise them on what to eat other than takeaways, etc. then the support worker cannot suggest doing it as it is that individual's right to live like that.
    It is their right of course, but there have been some worst case scenarios of people dying in squalor, and that is something I feel needs to be addressed. My feelings are that people need to be making informed decisions rather than just being allowed to continue on in a way detremental to their health and wellbeing unaware.If someone has taken time to explain the benefits of a clean home/not eating mouldy food/not eating takeaways at every meal etc and then that person, who has been assessed as capable of making their own decisions, still continues to live in that way then I can see there is probably little anyone can do (though it still worries me!). My worry is that too often they are not getting that information because people providing their support are simply saying that it is their right to live like that.

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    1. To anonymous, thank you for your comment. I think it's a very, very difficult balance. A piece of work which I did for my PhD, but which sadly had to be excluded for reasons of time and space (but which I hope to resurrect when I've finished), was talking to family carers and care workers about these 'everyday' issues which raised quite profound questions around autonomy, risk and care. Sometimes rules and restrictions came from a place of 'efficiency', "just because" and so on, but sometimes they came from a place of real love and care. I don't have a lot of sympathy for the former, but the latter type are really tricky. We love somebody, we can see that X will harm them, what do we do about it?

      I wish I had a pat answer to that. It feels to me that a companion piece to that piece of work is to talk to people, people like Amanda Baggs (although probably not Baggs in person as she's far away!), who have experience of such restrictions and ask what they would want in such a situation, how to approach these issues. The example of supported living services with the manky fridges is quite a good one - how far is it appropriate to 'educate', 'prompt', 'suggest', and does this become 'nagging' or even imposing rules? Some people do live in dire conditions, so why should the presence of disability make us approach such situations differently? Having said that, in my circle of friends and family there are plenty of people who would (do) tell me if (when) my fridge is revolting. I think it's important to be respectful, but also to recognise that poking your nose in sometimes is part of a lot of human relationships. It's one thing to say "this fridge is gross", another to say "you're not going out until you've cleaned it".

      There are a range of different relationships in our culture which involve a degree of paternalism - parenting (obviously), nursing, doctoring, teaching... but there are others too which can be a bit less heavy handed - like big brother/sister, or mentor, or even forms of paternalism we invite into our lives like personal trainers. I quite like the idea of a personal trainer because it's a form of support/nagging that's working towards a goal which a person has chosen themselves with a degree of input from the trainer. You can sack your trainer though, if you don't like them. One of the ideas that arises a lot in the context of the Convention on the Rights of Persons with Disabilities is the idea of choosing one's supporters, and having agreed upon forms of support. And so, for example, the Representation Agreement Act in British Columbia allows you to nominate 'representatives' who primarily provide support but in some scenarios have guardianship-lite powers, including of restraint if you so specify in your agreement. I think the facility to choose who supports you and in what way is a really big deal, and one which adults with learning disabilities often miss out on. It's all very well for places like Winterbourne View to say "we've got person centred care plans", but if you can't say "I don't want Wayne supporting me" then how person-centred really is that?

      But... there are situations which escape these ways of resolving the tension. Situations like crises, emergencies and so on. We also have to face the fact that some people don't want support, no matter who offers it or how.

      Anyway, as if to confirm the point about the fridge, I've just been reminded I need to put the washing away...

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