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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Monday, 26 September 2011

Is Article 12 keeping you awake at night?

Because if you are at all interested in issues around mental capacity and human rights (as I tend to assume readers of this blog are), then Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) should be giving you pause for thought.  Article 12 is the right to equal recognition before the law of persons with disabilities.  It has been described as the core of the CRPD, and also as a 'paradigm shift', a 'war of ideas' and a 'clash of creeds' (see Quinn, more on this paper below)  Article 12 stands firmly within the tradition of the social model of disability – with a view of disability as a phenomenon that arises out of social barriers, prejudice and discrimination, in contrast to individualised and medicalised accounts.  On this model, what we call ‘mental incapacity’ arises through a combination of discriminatory attitudes and a lack of supports to assist people with disabilities in decision making. Both of these, being social phenomena, are remediable if we undertake work to challenge oppressive attitudes and ensure resources to support decisions are available.  In the final analysis, the strength of Article 12 may rise and fall with the strength of the social model of disability – which, despite its very important insights, is not without its limitations (see Shakespeare, 2006).  In the meantime, however, there is much to be learned from the debates around Article 12, and I hope to explore them more fully in this blog in this post and others yet to come.

On first sight it appears that the Mental Capacity Act 2005 (MCA) can feel a bit smug within the framework of Article 12 – and indeed, that appears to be the view of the UK government in their draft report to the UN on the implementation of the CRPD.  After all, the MCA encodes various principles that seem to accord with the social model of disability, chiefly:
  • The presumption of capacity (s1(2)); 
  • Caution against prejudiced assumptions that a person lacks capacity by reference to their age, behaviour or ‘condition’ (s2(3)); 
  • A caution that decisions should not be regarded as non-capacitous just because they may appear unwise (s1(4)); 
  • A general requirement to provide support for decision making (s1(3)); 
  • A requirement to communicate information relevant to the decision in an appropriate way (s3(2)). 

However we should be very cautious of complacency here.  Some have written that the MCA is not so very far from the CRPD approach to mental capacity – but may need better safeguards (see Bartlett, 2009).  Others, like Amita Dhanda, have been more sceptical about the potential of the kinds of reform efforts for mental capacity law manifest in the MCA; she writes:

The legal redesigning has been prompted by the development of means and methods by which the law does not take over but only assists persons in living their lives in accordance with their own genius. However, as these efforts have not done away with the notion of incompetence, they continue to deny full personhood to some persons.
Dhanda rejects the very concept of incompetence, and argues that whilst it is entirely appropriate to provide support for decision-making for persons with disabilities, it is never appropriate to impose substitute decisions upon people on grounds of incompetence.  This is problematic for the MCA, because whilst it encourage supported decision making, it also makes provision for substitute decisions in a person’s ‘best interests’ where they have been found to lack capacity.

Dhanda’s critique of the notion of incompetence is that it unavoidably and inherently discriminates against persons with disabilities.  Part of her critique of reforms like those contained within the MCA rests on a presumption that functional tests of capacity tend to collapse into ‘status’ tests (see this post for discussion of different tests).  I am not sure this assessment is entirely fair, as I can think of several decided cases that would contradict the contention that 'once disability was established, no further questions were asked'.  I would be more convinced by arguments that functional capacity tests were often in danger of reducing to ‘outcome’ tests; although I would have to concur with her that it is generally outcomes of decisions made by people with ‘mental disorders’ that are subject to such levels of scrutiny and interference.  And – forgive my pedantry - in purely technical terms, the MCA is not purely about disability as a cause of ‘mental incapacity’, but also encompasses incapacity from other ‘impairments of the mind or brain’ – like being temporarily concussed for instance, being under the influence of alcohol or drugs, or under general anaesthetic.  However, in general terms it probably is sophistry (as Bartlett comments, 2009) to try to separate out mental incapacity from mental disorder, if only because the types of decision making we tend to label ‘incompetent’ tend also to be labelled as ‘disordered’.  The link between disorder and incompetence is not through neurophysiology, but through what we do with language.

The tension between substitute-decision and supported-decision models of legal capacity was manifest through the drafting of the CRPD.  In a fascinating paper (unfortunately only available through subscriptions) Dhanda chronicles the struggles between those delegates who wanted to include provision for substitute decisions, and those who fiercely resisted it.  There were also debates around whether guardianship should be explicitly prohibited in the CRPD, and disputes as to whether people with disabilities should sometimes be excluded from the exercise of legal rights.  In the event a proposal by Canada to maintain silence on the issue of substitute-decision taking was accepted by all.  The text of Article 12(4) reflects the Canadian proposal:
States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person's rights and interests. (Article 12(4), emphases mine)
Dhanda records that different state parties proffered different interpretations on Article 12 when the UN formally adopted the CRPD in 2006; with some maintaining that it prohibited discriminatory application of substitute decision making, but not substitute decision making itself.  Dhanda concludes that the final text of Article 12 ‘does not prohibit substituted decision-making and there is language which could even be used to justify substitution’ and as such is arguably still in the stranglehold of the past.'  

All of which would suggest that the MCA is congruent with Article 12, but if we look to Ireland, currently in the process of passing legislation very similar to the MCA, there are considerable debates about whether the Draft Mental Capacity Bill is in accordance with Article 12.  One of the best papers on Article 12 and mental capacity I have read is by the Centre for Disability Law and Policy at NUI Galway.  The paper contains as annexes several lively articles and presentations on legal personhood by Gerard Quinn, which are worth a read in themselves.  Like Dhanda, Quinn critiques the imposition of substitute decisions on grounds of disability.  And it is the arguments and discussions by Quinn and Dhanda around Article 12 – challenging the very concept of mental incapacity - that are keeping me awake at night.  In particular - is it ever possible to get away from discriminatory characteristics of 'mental incapacity'?  Is it ever acceptable for substitute decisions to be imposed when they do not reflect the wishes or preferences of the person they concern?

As someone a substantial way through a PhD exploring mental capacity law, reading these debates has been analogous to a car journey I once made whilst on holiday in mainland Europe.  We were driving down a newly built motorway towards our destination, following a new map we had just purchased.  Up ahead we thought we saw a traffic jam, but it was actually a series of cars doing U-turns in the road.  The motorway on the map was not in fact complete, the road up ahead trailed out into some gravel and bushes, and cars were pulling over to study their maps and re-appraise the situation.  There were expressions of enormous frustration on all of their faces – mine as well – we couldn’t believe the incompetence of the cartographers, road builders, government, etc etc.  But the route we eventually took to our destination was more delightful – and necessarily more engaging – than the motorway route would ever have been.

I am indebted to Dhanda and Quinn for making me consider issues of mental incapacity with fresh eyes.  It would be unfair to characterise them, or others who have entered into the Article 12 debates, as having uniform views, and the issues that are touched upon are very wide ranging and I cannot hope to address them all here.  I have attempted here to do what I find works well when something keeps me awake at night – and that is to make a list of what is bothering.  This list does not reflect the detailed engagement with the issues that their work deserves, it is a first attempt to set out what issues attracted my attention.  I am still, as it were, studying my map.

1. How far is the concept of ‘legal capacity’ in international debates coextensive with ‘mental capacity’ in domestic law?

In the wake of the adoption of the CRPD, a large and international group of legal academics and practicing lawyers (including Bartlett, Quinn and Dhanda) issued a ‘legal opinion’ on the meaning of Article 12.  This states:
Legal capacity consists of two integral components: the capacity to hold a right and the capacity to act and exercise the right, including legal capacity to sue, based on such right.
‘Mental capacity’ is thus related to legal capacity insofar as a finding of mental incapacity interferes with a person’s capacity to hold a right and to exercise that right.  And so, for instance, a person does not have legal capacity insofar as they are deemed to lack litigation capacity (because they cannot freely exercise their legal right to conduct litigation).  A person might lack legal capacity in relation to bodily integrity, because common law and Convention rights to be free from non-consensual interferences are limited where s5 (on consent) and s6 MCA (on restraint) apply.

At times, reading the Article 12 literature and the debates surrounding the drafting of the CRPD, I get a sense that foremost in the minds of many were issues around litigation capacity and guardianship.  In many jurisdictions, ‘legal capacity’ lumps all rights together – either one has capacity to hold and exercise all legal rights or one has no capacity to exercise any legal rights (including deciding where one should live, treatment decisions, owning property, conducting litigation, entering into contracts etc).  This is usually coextensive with being subject to guardianship.  Domestically, of course, the MCA rejects that approach, as capacity is ‘decision specific’.  Still, I wonder how far this ‘bundling up’ of legal capacity across all domains with guardianship has coloured some of the international debates.  A tendency to discuss legal capacity in vague and general terms means that some of the ‘hard cases’ (which I’ll discuss below) are not explored and the whole concept of incapacity is rejected because of concerns around guardianship, litigation capacity and institutionalisation. (Concerns which, I hope I don’t have to spell out, I share).

2.      Are there ever ‘incompetent’ decisions?

It seems to me that there is a bit of a fudge in some of these debates around legal capacity about whether any decisions could ever be considered incompetent.  Quinn accepts that there are decision-making deficits that have to be handled – and he proposes that instead of assessing ‘incompetence’ we focus on assessing what supports are required to develop decisional capacities.  Dhanda seems to me to take a harder line on the very concept of incapacity.  She states ‘as these efforts [at reform] have not done away with the notion of incompetence, they continue to deny full personhood to some persons’ and ‘in order to enable an individual to develop such capabilities [to live life as to realize his or her own inner genius], it is important that such individual be presumed to have the capacity to do so’.  That seems to me to admit of no occasions where a person should be treated as incompetent to make a decision.  However, Dhanda’s view is slightly more nuanced, as she later writes:
'A label of incompetence can often play out as a self-fulfilling prophecy.  Once a finding is reached that a person is incompetent to perform certain tasks, such person shall not be given any opportunity to engage in or learn those tasks.... [I]f a person is denied the opportunity to fulfil certain life activities, he or she fails to develop the capabilities required to perform those activities.'
This has echoes in the Law Commission’s own comments:
Nearly everyone can learn by experience, however slowly. If harm is taken to include under-achievement and lack of fulfilment, are mentally incapacitated people put at greater risk of harm by receiving too much care and protection, or too little? (Law Commission 119, [1.112])
I concur with Dhanda that there are few effective pressures to give people opportunities to develop their capabilities, and a finding of mental incapacity is often an easy short-cut to avoid making these opportunities available.  However, I also note that her comment that ‘A label of incompetence can often play out as a self-fulfilling prophecy’ acknowledges that incapacity does exist – albeit only as a result of (contingent, changeable) social processes.

Capacity can, of course, be enhanced through supports.  In my view one of the most serious problems with the MCA is that the safeguards to guarantee supports for decision making are weak at best.  IMCA referrals are far lower than were hoped, yet I can only think of one instance (Neary v Hillingdon) when a public authority has been castigated for this.  Issues around communication are likely to be affected by poor access to speech and language therapy; and it is unclear how far the duty to resource support for communication and educational development goes.  As I have written before, problems with the social care workforce (continuity of care, skill levels) are likely to impact upon ‘mental capacity’ in day to day matters because staff don’t know how best to support decisions, or they don’t understand a person’s communication methods.  The question is – even if incapacity is caused by social factors, is it fair that people should suffer the consequences of decisions that they did not understand at the time of making?

There are examples where a person cannot in any meaningful sense be said to be capable of making a decision – coma, for instance.  Whatever else, we will need incapacity laws of some form or another to deal with these cases.  The key issue is how to keep from ‘slippage’ where the label of ‘incapacity’ is too widely applied because it is so much easier and quicker and cheaper than building up trust, than providing opportunities for development, than lending support. Furthermore, even in an ideal world, there are times when a person simply does not want ‘support’ for decisions, when they think their decisions are fine.  Article 12 is clear that support must not be imposed against a person’s will.  Our tolerance for decisions regarded as unwise (or ‘unsafe’ might be more accurate) may very well be too low (I think it is), but can we really say we should never interfere?

3. Are there really never grounds for paternalistic interferences? 

I can think of many cases where the response might be “well fair enough, let them make their choice, we all take risks sometimes” – but I can also think of some really sticky cases.  Here’s one example:
Mrs F was an older woman whose family were concerned was becoming increasingly frail.  Her daughter lived some distance away, and had contacted a domiciliary care agency and asked them to put in a daily ‘welfare check’ to ensure her mother was ok.  Mrs F was staunchly independent.  Every day she opened the door to the care workers and said “I’m fine, now go away”.  She would shut the door, and the agency would record that she seemed fine.  One day when Mrs F came to the door the agency worker noticed she was in a terrible state – half naked, with faeces on her legs, her face was drooping on one side and she was attempting to eat a cushion.  Mrs F said, as per usual “I’m fine, now go away”.  The agency worker put her foot in the doorjam as she was concerned Mrs F was having a stroke, and forced her way inside.  She called an ambulance and waited with Mrs F – who kept up her request that she leave her house.  Mrs F attempted to put a plastic kettle on the hob to make tea (the worker took it off and hid it).  She attempted to leave the house, still in a state of undress, and the worker blocked her exit.  Eventually the ambulance took her to hospital – Mrs F was indeed suffering from a stroke.  After several months of rehab, she returned home.  She continued to reject welfare visits, and agency workers continued to respect her right to exclude them from her home.
In this case, the grounds for staff pushing past Mrs F into her property against her wishes (breach of common law rights of occupiers), hiding her kettle from her (interference with her property), restraining her from leaving the house (false imprisonment), are all premised on Mrs F lacking the mental capacity to exercise her rights in that particular case.  I can’t really see how else to formulate it – although that may be a lack of imagination upon my part.  The common law doctrine of ‘necessity’ in cases like this is merely the pre-codified form of the MCA itself, so that is no help.  We could say that this is not related to disability but illness – but this seems dangerous territory to me – since we surely want Mrs F to have the benefit of disability discrimination legislation if she needed it.  I’m not sure it is helpful to pick and choose between mental incapacity that is the result of temporary or long term conditions, but if this were to be done I can’t find any criteria to help us do this in the Article 12 literature.

The case of Dorset County Council v EH [2009] would be another example of a ‘hard case’ where it is difficult to see how to proceed without in some way going against a person’s wishes and preferences.  Mrs EH had dementia; she believed herself to be in full time work and managing all domestic tasks without assistance.  In reality, however, she was at risk of hypothermia (due to insufficient clothing); inadequate food intake (due to inability to plan and cook meals); of wandering into busy roads (she had previously been found scrambling down an embankment of a busy road); at risk of fire in the home (she had previously failed to recognise the smoke alarm when she set a pan on fire); she was forgetting to take medication for blood pressure and thyroid; and she experienced confusion and distress (she repeatedly phoned family members in a state of distress during the night).  Crucially, attempts had been made to support EH in her own home – but she resisted their support.  She thought things were fine.  It is hard to see, on the ‘supported-decision’ model, how to proceed in cases like this, where support is rejected.  And yet, they are not so uncommon that we can dismiss them out of hand.

It seems to me that we are left with a stark choice.  Either we hang onto the concept of mental incapacity, to allow us to get into Mrs F’s house and prevent her from setting fire to the kettle and to obtain treatment for a stroke, or we discard it.  If we hang onto it, we run the risk of it being applied over-zealously, in situations where it would have been possible to put in place supports for decision making, or where we should have been more tolerant of decisional outcomes that take risks or express values that we are uncomfortable with.  If Article 12 really does mean we should never treat a decision as incapable, I do feel that very little in the literature really acknowledges and engages with the extremely uncomfortable reality of cases like theses.  Can Dhanda's thesis - that we should reject all 'incompetence' provisions in law - be accepted in the face of these hard cases?  If – as I’m sure many will feel – we should hang onto the concept of mental incapacity, how are we to ensure it is applied sparingly?  What criteria and procedural safeguards can we draw up to mitigate the harms of paternalism?  I don’t think with the MCA we have got the balance right yet.  Whilst there is definitely potential for improvement, I suspect that risks attach to any legal framework that legitimises exceptions to ordinary legal rights.

4.      How can we ensure supported-decisions don’t collapse into substitute-decisions in the difficult cases?

Another concern discussed in the Article 12 literature is that in some cases supported  decisions may look very much like substitute decisions.  There are some obvious examples – how can a person in a coma really be said to be making ‘supported decisions’ about treatment?  Could ‘M’  -the ‘minimally conscious’ patient in W v M - really be said to be able to make her own decisions about withdrawal of treatment?  But there are also cases where a person’s ‘enmeshed relationship’ (e.g. A PCT v P, 2009) might mean that it is hard to say who is making a decision, and whether a degree of coercion or undue influence is not creeping into the ‘support’ arrangements.   There are many ways in which a person ‘supporting’ a decision can still exercise a degree of control over the outcomes – through careful selection of what information is presented, through weighting the advice given, through tapping into a person’s desire to please them with the ‘right’ decision, through tacit (or overt) threats of withdrawing other resources or supports if the ‘wrong’ decision is made.  Neither Quinn nor Dhanda are oblivious to these risks.  Quinn writes:
‘Maybe the threat exists in a stronger form in the context of intellectual disability – but it is actually a threat we we all navigate daily in our lives.  Depending on the relationship in question we are all deeply impressionable.’
I think it may be helpful to distinguish the social from the legal issues here.  Legally speaking, a weighting towards supported decisions away from substitute-decisions at least leaves open space for the exercise of legal rights.  Socially speaking, we must explore – in depth – the issues that make persons with disabilities excessively vulnerable to these forms of ‘undue influence’.  Perhaps one source of undue influence is a fear of retribution for the ‘wrong’ decision from the very person upon whom they are very dependent for support – how can we alleviate that fear?  Perhaps another space for undue influence is a lack of opportunities to experience other people’s views, other forms of support, as a result of infantilisation or institutionalisation?  How can we open up such opportunities?  The case A PCT v P [2009] is an interested one in this regard, because the end result is that the court directs that P is removed from the care of his mother (who is described as overbearing) against his expressed wishes, so that he can have the opportunity to develop his own abilities to express his wishes for himself, and awareness of opportunities for life beyond the family home.  I’m not really sure where this case lies in the context of supported-decision making models – is it appropriate to act against a person’s wishes and preferences, to reduce the grip of a stifling relationship?  I suspect the answer  from many would come down to “not if it is done on grounds of disability”.  Perhaps instead we could formulate it on grounds of ‘totalising control’, in which case other people in totalising relationships might be picked up by any legal safeguards against coercion.  How comfortable do we feel with paternalism applied to people without a disability (women in abusive relationships, perhaps) – and what does any discomfort tell us about our entrenched attitudes towards disability as opposed to other forms of vulnerability?

5. Thoughts on the overlap between Articles 12 and 19

Plenty of commentators have drawn a link between Article 12 CRPD and Article 19 – the right to independent living.  This was discussed recently in evidence between the Joint Committee on Human Rights for their inquiry into Article 19.  The Centre for Disability Law and Policy commentary on Article 12 states:
‘There  is  an  important  synergy  between  Article  12  (equal  recognition  before the  law)  and  Article  19  (living  independently  and  being  included  in  the community) of the CRPD.  In order to live independently in the community a person needs  to  be  recognised  as  having  legal  capacity.    Conversely development of  capacity  requires  experience  of  living  independently  and being included in the community and forming relationships.’
Given that my PhD is about the concept of mental capacity in day to day living, I am very interested in this synergy.  I have long been concerned that the phrase ‘independent living’ has been hijacked to mean de-registered care homes, without the concomitant change in outlook and practices that mean people really are empowered to make choices in their day to day lives.  I have discussed this issue to a certain extent in this piece on deprivation of liberty in supported living.  The case of G v E [2010] questioned the ‘realities’ of supported living, when it considered whether a person could in any meaningful sense be said to have ‘exclusive occupation’ of their property when:
‘...the circumstances of E's occupation preclude any tenancy ever being granted, since staff have unrestricted access to his room and provide necessary services, so that there has not been, and cannot be, any grant of exclusive possession’ [110]
The reality is that independent living is so much more than a tenancy; it is a rejection of the logics of institutional and/or infantilising care.  A more challenging question is whether it also requires a rejection of the logics of substitute decision making in day to day life.  There are people who are subject to extremely high levels of support, to ‘continuous supervision and control’, who remain subject to constant surveillance, constant oversight of their decisions, and consequently are constantly subject to potential interferences with the exercise of their will.  I have worked in such places.  I found it deeply, deeply uncomfortable and to this day I do not know what the solution is.  There were very real risks indeed with allowing people the same degree of freedom most of us enjoy.  But likewise, the risk of a stultifying and oppressed existence was there for all to see.

The twin dangers that the CRPD must navigate domestically, then, are that Article 19 will be interpreted narrowly and legalistically – meaning simply they use a domiciliary care provider and they have a nominal tenancy – and that Article 12 will be interpreted in such a way as to focus on ‘big’ issues like medical treatment decisions, guardianship, and elude creating real and effective rights to make decisions in day to day matters.  A careful analysis of how these provisions can be interpreted in tandem is needed to ensure that the legal capacity to enjoy ordinary everyday freedoms does not fall between the cracks.

6. The intractable problem of discrimination 

I have stated that ‘mental capacity’ as it is defined under the MCA does not merely target disability, but I believe it would be naïve to pretend that it does not disproportionately affect people with long term developmental disabilities, mental health problems, brain damage or other disabilities.  One key issue – that I feel is inadequately addressed in most of the literature on mental capacity – is that even if the test of mental capacity does not reduce to an outcome or status test, even if it does reliably pick out something ‘real’, the test itself is a considerable interference with a person’s privacy and autonomy.  The reality is that once a person’s mental capacity is brought into question, they are effectively compelled to give themselves up to a very intrusive assessment of their understanding and intensions.  If they do not co-operate, the risk is that they will be regarded as non-capacitous because they have failed to demonstrate their ability to understanding or use/weigh information, or to communicate their decision.  The power is almost entirely in the hands of the assessor, unless a further legal challenge can be mounted against their assessment (and I would suggest the prospects of that are slim indeed).  And furthermore, the person being assessed has very little power to decide who assesses their capacity – and so they may be subject to assessment by persons whom they neither trust nor like.  There are other systems which enable people to appoint ‘representatives’ on the basis of trusting relationships, which would at least enable assessments of ‘reasonableness’ to be taken by a person whom one trusts (e.g. the British Columbia Representation Agreement Act 1996).

Furthermore, in order to assess their capacity the assessor must acquaint themselves with a considerable amount of information that we would often regard as private.  My suspicion is that in the name of mental capacity assessments, ordinary rules about data protection go by the wayside.  I am sure that assessors often seek information relevant to appraising a person’s decisional capacities from documents, from friends and family, from colleagues, without first obtaining the consent of the relevant person.  I would like to see more research on this.  Often data sharing agreements, such as obtain within the NHS, will be relied upon to deal with legal concerns about privacy, but the practical consequence is that even if a person is found to have capacity, they may be subjected to a very intrusive and disempowering process of having to justify to another person their reasons for taking a particular decision.  The assessment of capacity does not – in short – come free.  It has human rights implications all of its own, and I feel these are poorly addressed in the current framework.  Dhanda notes this, and argues from it that this is grounds to discard the very concept of incapacity: 
‘this process of identification will render the capacity of all persons with disability open to question, since it would give rise to a situation where for questionable advantages to a small group of persons, all persons with disability shall be disadvantaged.’
For the reasons outlined above, I am reluctant to agree that we can throw out the concept of mental incapacity altogether – but it is very hard indeed to see how we can escape this critique. We could certainly improve upon the transparency and contestability of capacity assessments, improve safeguards for data protection and confidentiality, perhaps even impose penalties for unwarranted assessments of capacity. But no doubt, there would still be those who were subject to capacity assessments who should not have been.  How do we balance the question of rights here?  The answers to this will depend as much on political outlook as empirical research.

[edit 26/09/2011: In a stroke of synchronicity, one of my favourite bloggers - Amanda Baggs - posted a piece today on her experience of being assessed as 'lacking capacity'.  She describes very powerfully the power issues I talked about here, but more importantly the experience of being denied one's personhood.  This passage, in particular, stood out to me:
By the time I was old enough to be aware of myself as a person, other people had already made clear that I wasn’t, actually, a person at all. So I never learned that I was.
She also says of staff she has encountered:
...even the better ones had instructions to follow which are impossible to both follow and respect basic rights, which is exactly how institution type power structures function.

The idea that it is impossible for institutional type power structures to function in a way that respects rights is worthy of longer discussion than I can give here - but hopefully I'll return to it in the future.]
7. The limits of legalism 

My feeling is that ‘mental incapacity’ is not merely a legal concept.  I think discourses of incompetence, in one form or another, are very broad and have likely been with us for a very long time – although no doubt their shape and manner of expression has been subject to change.  When I think of ‘mental incapacity’ I think not only of formal legal processes like guardianship and litigation capacity, but the way people lose control over the day to day decisions that make up our quality of life.  Mental capacity ‘in the small places’, if you like.  I am unsure how far the law in general – and the CRPD in particular – can unpick and challenges discourses of incompetence as they are embedded in day to day life.  This problem may be particularly exacerbated in family-based care.  Discourses of incompetence are there in the speech even of those who have never heard of the Mental Capacity Act, who are barely acquainted with the law.  Law, of course, has normative force – and in that sense it may begin a long and slow process of challenging and changing discourses of incompetence even in places far from the courtroom and statute books.  But equally, we should be alert that these discourses are the very tools that law is constructed out of, understood and interpreted through.  We should be very alert to the possibility that these deeply sedimented ways of thinking will capture and colonise Article 12.  It is indeed a paradigm shift, but a paradigm that extends far beyond the law.


  1. I am a housing lawyer and duty solicitor on possession case days. This comment does not extend to beyond England (including Berwick upon Tweed) and presumably Wales.
    There is a danger of throwing out the baby with the bath water. To some extent this has been done with the Mental Capacity Act in cases where proceedings are taken against someone who should be protected.
    There are a number of provisions to protect people from being taken advantage of.
    One such provision is the system of requirement (contained inter alia in the Civil Procedure Rules in particular) of a litigation friend in certain court proceedings.
    Under the old régime a person protected by the system was called a patient.
    Under both régimes a person was not permitted (without court permission) to take any step in court proceedings except issuing and serving a claim form or applying for a litigation friend to be appointed. CPR21.3(2)
    Under the old régime a patient was someone who by reason of a mental disorder within the meaning of the Mental Health Act 1983 was incapable of managing and administering their property and affairs.
    The danger lies in judgments in default, or of no attendance at court by the “patient” and a (possession) order being obtained followed by the bailiffs.
    If this is obtained against a protected party it is obtained in breach of CPR 21 and it is straightforward to get a judgment / possession order or even an eviction set aside.
    I see people all the time who by reason of eg schizophrenia or depression (both mental disorders) are not coping , are not opening their post and not facing up to other than the daily routine or sometimes not even that — retreating to bed for days at a time.
    Someone not opening post is not managing their affairs. Under the old régime if for depression etc they would be protected.. Under the new régime it is much harder because if appropriate questions were put to them, many would be capable of giving sensible answers and instructions and not protected but the protection is still needed.
    Under the Convention on the Rights of Persons with Disabilities article 5.4 makes provision for reverse discrimination by not calling it discrimination.
    Article 5
    Equality and non-discrimination
    4. Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention.

  2. Hello there,

    Thanks for your comment (I had to look up the Berwick-upon-Tweed reference!). The issues you raised are not ones my research focuses on, but they are clearly really important areas for protection. In the OS's response to the legal aid consultation, he stressed the problems that will arise out of removing legal aid for bankruptcy and possession proceedings where a person requires a litigation friend:


    I have no experience in this issue, but I was interested in your comment that 'Under the new régime it is much harder because if appropriate questions were put to them, many would be capable of giving sensible answers and instructions and not protected but the protection is still needed.' If you could point me to any published case law that could illustrate this difference I would be really interested. I suppose I tend to regard the test for capacity under the MCA as quite "flexible" - certainly many doctors are skilled and finding grounds for a lack of capacity! So I would be surprised if it wasn't arguable in these circumstances that a person couldn't use/weigh the information. But perhaps the point is that 'capacity' is not the same as 'coping'?

    I think the problem with interpreting Article 5.4 CRPD as promoting a more protective regime, is that Article 12 promotes *support* but not (according to many) substitute decision making (ie. best interests decisions). In which case, the role of a litigation friend would be to advise, explain and interpret, but they could never depart from the instructions issued by their client - or from acting in accordance with the will and preferences of their client. I'm not sure if you feel this would be problematic or not?