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.

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