Freedom and Feeding
by Tom
Food is the focus of numerous psychopathologies — the most familiar being anorexia nervosa (involving a fixation on caloric restriction and bodily control) and bulimia (characterised by binging and purging). Less well-known is the extreme impairment of the satiety response that is found in persons with Prader-Willi syndrome. In this post, I want to consider what Prader-Willi might reveal about freedom in the context of psychopathology, particularly in relation to treatment and care regimes that can be coercive.
Prader-Willi syndrome (henceforth ‘PWS’) is a rare genetic disorder which manifests in around one in twenty-thousand people. It results from the non-expression of genes on chromosome 15, with effects that begin in utero. Babies born with PWS tend to be hypotonic or ‘floppy’ with a poor suck response that necessitates them being tube fed. At this early stage, there is little to no interest in feeding, and parents’ attention and hopes are aimed at ensuring their children eat. Typically within two years, appetite increases and weight is gained to well-above average levels.
Adults with PWS usually (but not invariably) experience significant intellectual disabilities; and emotional difficulties, infertility and suceptibility to diabetes are common. However, I shall focus on appetite here. Despite some variation, people with PWS ordinarily experience excessive and virtually unquenchable appetite that, left unchecked, can lead to life-threatening obesity. For instance, anecdotally, one man who left the controlled environment of residential care died from weight-related complications within 8 months — this being an all-too-common tragedy. Research suggests that the core problem is inhibition of satiety rather than hunger per se. Appetite is barely dented by calorie intake; it becomes literally insatiable.
Prader-Willi is exceptionally difficult to manage in the home, with constant battles over access to food and drink, exerting a huge strain on all involved. Locking consumables away in cupboards is often not enough — persons with PWS have been known to eat cardboard and even soap. Shoplifting is another common problem, and the Erysichthian ache for ever-more food can also leave people open to exploitation and abuse. Specialist residential centres are available for some people who can secure local authority funding, and they represent another route for managing people’s PWS. Meals are strictly regulated, access to food and money heavily policed, and for some residents, outside travel to work placements and recreational activities is supervised by a member of staff in order to prevent binging.
To some, this might seem outrageously paternalistic — an infringement of the basic rights to liberty which adults without disabilities can use or abuse as they see fit. People make all sorts of ‘dumb choices’: drinking and smoking themselves to death, throwing away their lives in fucked-up relationships or tumbling into decade-spanning numbed-out hazes of Xbox and weed smoke. Thus, what possible justification could there be for such heavy-handedness in relation to people with PWS?
My understanding of PWS is cursory and second-hand, so I hesitate to make firm judgements about the condition, let alone the lives of people with the syndrome. However, I think that concentrating on structural features of PWS and attendant care settings can be useful in thinking about potential justifications of coercion. This is because PWS illustrates the relation between some different aspects of human freedom in a particularly perspicuous fashion.
To return to our question, is there a reason why coercive measures, like locking away food and restricting access to money, might be legitimate in some situations encountered by people with PWS? One defence could be prior consent. I’ve only spoken to one staff member in a PWS residence, so it’s not clear whether this is standard practice, but where she works, residents sign a contract upon entering, agreeing to certain rules by which the institution operates. Since there has been consensus beforehand, then agreed-upon restrictions on liberty can look to be self-authorised. But given pressure from families and the cognitive and emotional difficulties people with PWS often face, it’s not clear how meaningful any complex future-oriented consent can be in many instances. In this respect, the coercion of persons with PWS in relation to access to food would be different from Odysseus’s efforts to hear the song of the Sirens without harm by commanding his soldiers to tie him to the ship’s mast and ignore his pleas to be unbound. Crudely, the ruggedly independent Odysseus, who hatches the plan himself, seems better placed to know and be accountable for what he is getting in for.
Furthermore, appeals to tacit consent for coercive care regimes look not to be compelling justifications either. For example, and again anecdotally, the Mental Capacity Act has been used as a lever to persuade people considered seriously ‘at risk’ to stay in residential care — them being told that, if they try to leave permanently, they will likely be found to lack decision-making capacity in relation to their living arrangements and that a best interest decision will be made for them. Thus, even when there is prior or tacit consent, it looks to be vitiated in the circumstances under which it would typically be given.
Antiseptic expressions such as ‘restricting a person’s liberty’ can obscure a fraught reality of arguments, resentment, misery and violence. Coercion is no small thing. Yet, PWS engenders situations in which untrammelled individual liberty destroys rather than sustains autonomy. Thus, I think the idea that coercion of some people with PWS in relation to access to food and money can sometimes be justified — even in the absence of prior or tacit consent — is one we should take seriously.
My freedom can potentially be deepened by preventing me from acting on my most intense, enduring and visceral desires. This thought tends to strike people either as soporifically obvious, highly paradoxical, or both. How you respond is likely to be determined by the conceptual framework you bring to the concept of freedom. If negative liberty — freedom from interference and impediment — is foremost in mind, then the thought may appear incoherent. It looks to be similarly implausible if self-governance consists in being recognised to be a self-sufficient agent whose actions should never be directed by others. Even on certain conceptions of freedom as authenticity, then given sufficiently insistent and recurrent desires, being stopped from pursuing them will only diminish freedom. But we ought to reject these understandings of freedom; or rather, the most fruitful way to approach freedom is to subsume these aspects into a more comprehensive structure, such that they are not necessarily decisive factors.
Self-determination requires social scaffolding. Typically, this involves others deferring to someone’s present wishes or giving them a hand in realising them; but at times it is these wishes themselves that warp a person’s psyche, leaving them unable to think, feel or act other than in a deadeningly fixed fashion. When agency is highjacked, becoming unresponsive to reason, its environment and other affects, then freedom and free rein no longer coincide.
PWS looks to be a paradigm case of agency being overridden: without the structure and resistance provided by appropriate institutions, then people are consumed by their appetite to consume. When wracked by an insatiable hunger, which returns with a similar ferocity shortly after eating, then being left to the Sisyphean labour of adhering to it — physically and mentally enervating oneself in the process — amounts to no freedom worth having. Indeed, it is being abandoned to another kind of slavery.
Freedom of whatever kind need not possess lexical priority, and the torrent of pain and frustration involved in battles over food may prove so great that it becomes the decisive factor in determining what to do. Yet, the best that can be said for others stepping back in such situations is that it would offer someone momentary satisfactions and spare them the exhausting and fractious wrangling over access to food. However, the relative success of residential support for people with PWS suggests that this would be the exception rather than the rule. In a controlled environment, where people know that no amount of arguing or emotional pressure will get them extra food, then stress and anguish is partly lessened anyway. Moreover, ’empowerment’ (another of those sterile words) becomes a tangible reality: the power to act is massively inreased, whether that is a capability to do things one enjoys (because the distractions of food are less present), to work (because a carer stops one being waylaid on the journey), or to visit places (because ill-health does not get in the way of travel). Despite the vexations of the additional constraints involved, such an existence looks to be more autonomous than one without them: self-direction is secured more comprehensively through being subject to extraordinary limits in some specific areas.
It is difficult to draw general conclusions, not least because people with PWS live very different lives. However, I think we should be sensitive to a few basic points: (i) desires can corrode agency as well as express it; (ii) freedom is multifaceted, extending beyond negative liberty and including functioning agency and real capabilities to act; (iii) self-determination relies on scaffolding that can enjoin others to step in as well as step back; and (iv) it is possible to augment autonomy by curbing liberty. The orectic structures fostered by PWS help to exemplify all this, suggesting that there are strong grounds for limited coercive intervention in at least some lives dominated by PWS. Counterveiling considerations soon crowd in, of course, such as demands for normalisation of people with disabilities, equality of respect for persons, and a historically informed revulsion for any psychiatric-led coercion. Thus, no decisive justification emerges and H.L. Mencken’s maxim holds: “For every subtle and complicated question, there is a perfectly simple and straightforward answer, which is wrong.” Yet, the overarching thought here — that institutions can provide structures in which to realise freedom even (or sometime especially) if they close down untrammeled choice — is one which should be more often borne in mind.
More information on Prader-Willi syndrome
The best book on the subject which I have come across is Prader-Willi Syndrome: Development and Manifestations by Joyce Whittington and Tony Holland. Another good introduction is Can’t Stop Eating — a documentary I remember seeing years ago and which is now available on YouTube.
Morbid Symptoms 
Hi Tom, great piece – I’m really glad you wrote this as I’ve been thinking more about PWS services since the EAP summer school. I had a few thoughts to offer. Firstly, on the ‘consent’ and control issue. As we discussed at summer school, we often use arrangements in our everyday lives to make bad habits more difficult, perhaps through modifications to our environments, but also sometimes by giving others a form of formal or informal authority over us. And so, for instance, my partner and I police each other to give up smoking… In my interviews with carers and care workers I ask about models of caregiving relationships (parent/child; teacher/student; health professional/patient; servant/master…) and one that was put to me was ‘personal trainer’. The interviewee suggested that they supported a person to achieve their own goals, even if that included nagging them sometimes. In a legal context, under the Representation Agreement Act of British Columbia, a person can nominate the ‘representative’ and authorise them to restrain them. It’s another example of consent to coercion, if you like.
Collopy has talked about ‘contrapuntal’ aspects of autonomy, whereby ‘Present freedom can work against future freedom; liberty exercised in one arena of life can curtail liberty in another; immediate autonomy can clash with long-range autonomy.’ I’m trying to give up thinking about autonomy in terms of ‘more’ or ‘less’; I think it might be more useful to think about the ‘shape’ of a person’s autonomy, and whether that ‘shape’ is more of less attractive to us. And I definitely agree that ‘Self-determination requires social scaffolding’, for all of us. But I’m very wary indeed of talking in general terms from examples like PWS. I’ve just had a little search of the literature and I can’t find any research into the experiences of people with PWS whose behaviour is restricted by others. There’s a lot of stuff from the perspective of the staff, who will almost always tell you that what they’re doing is empowering in my experience, and that may bear varying degrees of resemblance to reality, but there’s very little stuff about the experiences of those they support. There is a literature that suggests care staff tend to over-estimate the quality of life of those they support…
I think once you start to look beneath the surface of general principles like “is it ok to restrict somebody’s freedom over eating in order to free them from their desires” a whole host of other issues arise around how this goal is achieved. Who are you empowering over them? Do they have any choice in this matter? (one of the criticisms of the MCA is that, unlike the RAA, it empowers just about any old person, without much regard to the quality of their relationship to the person they make decisions on behalf of). What are their living arrangements like, in order to facilitate this control? Does limiting a person’s eating also limit their freedom in other affairs – like their social relationships? What areas of their life *do* they manage to retain control over in a PWS home? How is staff authority over residents manifest in social interactions, and what impact does this have upon PWS sufferers sense of themselves? Ethical issues around autonomy may be sensitive to seemingly small details of how liberty is curtailed. How long do people with PWS expect to live in services exercising control over them? A key contrast between mental health interventions under the MHA and control exercised in social care is duration. A force-fed anorexic may go on to recover and be thankful he or she survived; but a person expected to submit to the control of others’ for the duration of their lives may feel less thankful.
That is all! Nice diversion from writing about Goffman (can you tell?!)…
Thanks Lucy — some very useful comments, as always!
How best to characterise forms or relationships of control exercised by oneself and others is something I’ve been thinking about too. Examples of externalising self-control — even as simple as unplugging the internet or leaving post-it notes around — tend to be interesting. In a sense, they’re illustrations of a Fichtean model of freedom: I can be (more) self-determining in an alien world if I act to change that world so that its influence on me can be taken up as my own. But it’s possible to give them a more materialist interpretation too in terms of the extended mind hypothesis; i.e. there are no sharp boundaries to the self, such that we should treat environmental techniques as no different in principle than supposedly ‘inner’ forms of self-control like willpower and habit. In other words, the self of self-control can spill out into the world, even if its primary locus is the human body, such that what counts as self and other is foremost a pragmatic issue.
Personal trainers are a good metaphor for those care relationships that provide the necessary friction while still being oriented by autonomy. Another (rather cruder) model that we’ve discussed on the project is the barrister-client relationship, where the client sets the ends and the barrister decides the means for getting there; but since so much hangs on microdetails of coercive measures, this probably won’t be a very helpful analogy in analysing care settings. In discussing paternalism, one of my colleagues has suggested bearing avuncularism in mind, where the (supposed) benevolence and greater wisdom are present, but without the high levels of authority. I find that a helpful contrast, although I think we need a whole bunch of new metaphors to try and recast or reimagine what care relationships are and could be. If your interviews throw up any more, then do let me know!
I very much agree about quantifying autonomy; it’s all-too-easy to slip into that sort of language, alas. In a previous workshop, Joel Anderson suggested thinking about autonomy in terms of a spider diagram across various measures rather than a unitary scale, where the resulting shape is what matters more than any single dimension. At any rate, the question, ‘what kinds of autonomy are valuable ones?’ is one that I think is not asked enough.
Similarly, I didn’t want to generalise too much from the case of PWS — indeed, what makes it so interesting is that the orectic structures are so unusual and relatively clear-cut in a way that you do not find in most care (or life in general). Plus, as you say, so much depends upon the nature of the intervention or coercion; it’s not a separable factor in considering justification — the means and end form a unity for that purpose. I’m also wary of making too much of carers’ self-descriptions without hearing from people with PWS (which perhaps did not come out sufficiently in the post). At our last workshop, George Szmukler asked if there was qualitative research that focuses on PWS perspectives, but no-one had come across any. It’d be great if someone did some.
Your last point — about the duration of curtailment of liberty and being in a controlling institution — is very important. Recently, I’ve been thinking about this in terms of a ‘care trajectory’. It’s one of (many) things that makes me uncomfortable about the Cheshire ruling that the constant implicit equation of persons with disabilities with children fails to be sensitive to this trajectory. Childcare is usually oriented by the expectation of a huge increase in negative liberty at a later point; but this is often not the case in relation to those with severe learning disabilities or (at the other end of arc, so to speak) with dementia. It seems salient that some people are never accorded full legal standing (or equal deprivation of liberty review procedures in this case), or that they once had such standing which is now being taken away. In the former case, there is definitely something to be said against the prospect that at no point in a person’s life would they be permitted to strike out on their own, even if this increases the prospects of pain, illness or danger.
Hi Tom,
Thanks for your comments back. As ever lots to think about! In the dim and distant past when I was going to do a PhD on visual perception (!) I was interested in philosophies of ‘extended mind’, and I’ve been thinking a bit recently how they might map onto support for autonomy. I’d like to see more work around environmental modifications vs. ‘extended mind’ that incorporates the activity of other humans (or animals – guide dogs?). I don’t know if I’ve banged on about this brilliant book to you before:
But there’s a chapter in there that’s makes a case for thinking of people who support people with cognitive disabilities in their decision making as akin to ‘prosthetics’ (by Francis and Silvers). This model is often taken up in the debates around supported decision making in Article 12 CRPD. I think that the idea of another person as a prosthetic may be more problematic than they suggest. One controls and manipulates a prosthetic; there’s not much chance of a prosthetic doing the same to you. I think this is a risk that is seriously underplayed in the literature around Art 12. I also worry about issues of responsibility and authorship. Supposing you (with your prosthetic) decide it’s a good idea to commit a crime; it throws up dilemmas of who is responsible. Suppose your prosthetic is really good at supporting you to play chess (they are a grand master, say), and without your prosthetic you can’t tell a rook from a knight – can it meaningfully be said that *you* have won a chess tournament? It seems to me that our ways of thinking about agency are pretty resistant in certain areas to ‘spread’ across over humans (and even environments and tools in some cases). The degree to which the human-prosthetic is seen as a prosthetic, as opposed to an Other, may depend on the type of work being done, and the way in which it is done.
I’ve just written a long review of the literature on institutions as ‘corrosive’ to autonomy, but I’ve also been wondering about a parallel literature that’s rarely discussed in that context. Have you heard of the ‘nun study’? Snowdon and colleagues got a load of nuns to agree to be subjected to various assessments during their lifetime, and then be autopsied when they died. The nuns lived long and healthy lives, had high cognitive and practical functioning until the end. But when they autopsied them, some were riddled with Alzheimer’s plaques – but had showed no symptoms during their lifetime. Snowdon and colleagues theorised that the routines and familiarity of the institution supported their continued functioning. So regimentation and institutionalisation may not be all ‘bad’, but from a practical perspective it may depend on familiarity, and from a moral perspective it may depend on how ‘invested’ in that institution you are.
http://www.annals.org/content/139/5_Part_2/450.abstract
Off to unplug the internet now…
Cheers for the Francis and Silvers reference; I’ve just had a quick look through that chapter and I agree that considerations of instrumentality and agency make the prosthetic model problematic. Plus, the metaphor risks divesting people in support or care roles of agency — it’s not very flattering to have one’s hard work and commitment equated with a lump of carbon fibre!
Wayne has been thinking about these problems recently in developing his concept of ‘decision communities’, where cogntive and evaluative labour is distributed. This started off as a way to think about shared or supported mental capacity, but in his more recent work it looks more like a model of surrogate or supported decision-making. The first question people ask when he gives talks on the topic is usually, ‘How much can be distributed and how much must belong to the individual themselves?’ The answer seems to be something like that the individual must be able to affectively ‘own’ the resulting decision; but that looks not to be enough to address many kinds of other-attributed responsibility, like the chess player and criminal cases which you raise.
Recently, I’ve been trying to relate some of these issues to Gerd Gigerenzer’s work on ecological rationality. (I reckon he’d be very sympathetic to the conclusions of the nun study, by the way.) The aim is to think of mental capacity and agency as similarly ecological: consisting in an interplay between psychological strategies and an environment within and towards which our psychologies are oriented. That sounds obvious but it’s rarely done well (e.g. most ‘relationalist’ positions do a bad job). Working out some conception of shared or composite agency is particularly tricky due to the connection that ascriptions of agency have with responsibility-attribution, appraisal and punishment, since they are so entwined with normatively-laden social practices with complex histories. It’s still a bit half-baked but basically I want to further problematise some of the implicit liberal metaphysics of personhood that informs much discussion of autonomy (not to mention mental health law). It seems that it’s often confusions at this level that lead to bad thinking about concrete care issues, particularly where the proper bounds of ‘intervening’ in someone’s life are.
Really look forward to reading Wayne’s work on decision communities and yours on ecological rationality. On your point about reducing a carer to a piece of carbon fibre (not literally), I think a growing concern about models of care in the disability rights movement is the way it handles carers. In his book ‘Disability Rights and Wrongs’ (Chapter 2, to be precise) Tom Shakespeare talks a lot about a) theoretical tensions between the ‘ethic of care’ and disability rights theorists (including Silvers), and b) the possibilities for practical exploitation and de-personalisation of both disabled people by carers (not discussed in the ethic of care literature), but also carers by disabled people (not discussed in the disability rights literature). He also complains about the way the ethic of care and disability rights literature seem to ignore each other’s concerns, which is something I’ve found as well. There’s a real assumption in the ethic of care literature that it’s just obvious what ‘good care’ looks like, and I think the concerns expressed by disabled people around ‘mental incapacity’ frustrate that.
The models of supported decision making by Francis and Silvers seem, to me, to attempt to create a hybrid of the acceptance of dependency you see in the ethic of care, combined with the reification of individual autonomy and liberty you see in the ‘rights’ literature. I’m not sure that these models, from two such conflicting traditions, can be as easily combined as they suggest.
Must get around to reading that Tom Shakespeare book soon then. Whenever you mention something he says, it always sounds interesting and very plausible!
[…] This structure is also found in some collaborative emergency care plans in psychiatry (where advance decisions are typically not valid). These involve the person themselves in planning the response ahead of time when it’s likely that someone is going to end up ‘losing the plot’ – for instance, before the manic phase of bipolar disorders kicks in. Again, people are being invited to think about how to restrict their future liberty for their own good. (George Szmukler and colleagues have written more about the use of these ‘joint crisis plans’.) Yet another example might be residential care homes for people with Prader-Willi syndrome, which I discuss in this post. […]