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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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Saturday 12 October 2013

United Nations Committee publishes draft General Comment on legal capacity and human rights

The United Nations Committee on the Rights of Persons with Disabilities is the monitoring body (and the body that hears complaints) for the UN Convention on the Rights of Persons with Disabilities (CRPD). One of the most important provisions of the CRPD (to me, and probably to readers of this blog as well) is Article 12 – the right to equal recognition before the law. The drafting of Article 12 was said to be among the most controversial of all the Articles of the CRPD, and it has posed some of the greatest problems for ratification by states. The core issues are whether or not states can use what the Committee calls ‘substituted decision making’ mechanisms, and what 'supported decision making' regimes might look like.

In their most recent session, the Committee published a draft General Comment on Article 12, which aims to throw light on the Committee’s position regarding equal recognition before the law and legal capacity. It is a very important document, and the Committee are inviting comments on it before a final version is adopted, to be submitted before the end of January 2014.



Legal capacity is one of the most complex areas of law, spanning a hugely diverse range of legal mechanisms, people and situations.  The Comment throws up some very complex questions, which I'm not even going to attempt to answer here because they are so deep and profound they deserve more thought than I can give them in a blog post squeezed between other commitments.  

Among the questions I have no answers to are: what is legal capacity (are all limitations on human freedom of action and choice a deprivation of legal capacity?); does the General Comment outlaw 'functional' approaches to capacity, or only when they are discriminatorily or disproportionately applied to people with disabilities (is it possible to frame a functional test that doesn't have that consequence? could striving for equality result in an expansion - rather than a contraction - of interventions premised on a functional test? how do we ascertain whether it is 'disproportionately' applied - how do we compare across the diverse situations these tests operate in for different people?); are the 'informal' mechanisms of s5-6 MCA a form of 'substituted decision making' since they don't obviously 'appoint' a person to act and they take the form of a defense not a 'removal of legal capacity'? (do we want them to be excluded from this definition?); are all crisis interventions - including the use of life saving physical interventions in situations of real and immediate danger - prohibited (as paragraph 16 suggests)?; does the prohibition on forced treatment only include 'mental health' treatments, or might it also include situations of emergency medicine where a person is confused as a result of a fever, brain damage or the use of mind-altering drugs (medical or otherwise)?

What is clear, however, is that England and Wales needs to raise its game in relation to supported decision-making (it could start by looking at the approaches taken in British Columbia, Australia and the new Irish Bill).  I honestly think that if disabled people's organisations - and organisations with more input from carers - looked at these kinds of supported decision-making systems, they could garner a lot of support.  It is also clear that systems like deputyship - which involve a formal declaration of incapacity, the appointment of a third party decision maker without the person's consent (or in the face of their objections) who must make decisions in the person's 'objective best interests' and not according to their will and preferences - are definitely prohibited by Article 12 CRPD.  

The other thing that is clear from the General Comment is that the 'solution' (I doubt there is 'a' solution, or that Article 12 CRPD can be 'solved' any more than any other human right, given their evolving nature) is not to be found by solely by lawyers, civil servants and academics sitting around thinking clever thoughts, but through careful consultation with and the active involvement of the very people this legislation affects:
In the development and implementation of legislation, policies and other decision-making processes to implement Article 12, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations. [46]
I hope that in the UK human rights monitoring bodies appointed under Article 33 CRPD, like the Equality and Human Rights Commission, start to take more notice of the implications of Article 12 CRPD, and adopts a less complacent attitudes towards legislation like the Mental Capacity Act 2005 (MCA) than the government has in its state report on the CRPD.  It would be great if more disabled people's organisations, disability NGOs and disability studies academics could get stuck into thinking about the questions raised by Article 12 about the MCA, rather than accepting the MCA's claims to empower and promote rights at face value.  At the very least, if they could acknowledge that there is a major challenge to these claims from such a weighty body as the UN Committee on the Rights of Persons with Disabilities, that would be a good start.  'Nothing about us without us' is a fundamental premise of the CRPD, and there is a real danger that - in the UK at least - discussion around the implications of Article 12 are for the most part taking place in the absence of the very people this legislation directly affects.

As to the rest...  there'll be Article 12 related insomnia in these parts for some years to come.

4 comments:

  1. Lucy,

    That, State Parties shall consult and include families......

    Had we known about Lasting Power of Attorney, (as my son had capacity when he left home) my son would have been able to have been protected from his hell experience. MCA does not empower and promote the rights of anyone with a disability, this was not our experience....

    It is by far affordable for the average person, LPA is only available for the lucky knowledgable few....thus leaving a door a creak for the Social Services to slip in and destroy the spirit of the Disabled Person and their Families....

    Then families are deemed challenging and a vicious circle begins of them and us.

    Why do we British need to live in fear that our loved ones are going to be taken away from us, to be abused neglected and away from family life and positive structure?

    When one is thrown into a world of disability and mental health one is also thrown into a system that is based on fear...

    This mentality needs to stop.

    Can this stop?

    Can Article 12 stop this happening. Is this an open window to change and recognition for families if so come on then all you policy makers and academics get real and humanistic. INCLUDE US........

    My Local Authority did not take into consideration the meaning of Article 12 nor did they implement it...

    Nor any other Legislation regarding my son's Disability and Mental Health Issues....

    Compassion Common Sense, and Commitment to change is vital for all that are living with any form of Disability and Mental Health, within the family structure.
























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    1. Hi there,

      I agree that families can feel very sidelined by the MCA. Where they play an important role in supporting a person, helping them to make decisions and communicate their decisions, this is actively disempowering for the person themselves. Overseas, some countries are exploring systems which would enable people with disabilities to choose their supporters and they would receive greater legal recognition (as well as rights to access information on behalf of the person). Rather than a 'right to be consulted' (which the MCA doesn't straightforwardly deliver anyway), they are recognised as part of a person's chosen support structure, and it is the person's own right that their supporters are involved in the decision. You might be interested in looking at these systems in British Columbia, Australia and the new Irish Bill (links in the blog post above).

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  2. The point that is relevant is that as far as Art 12 and the MCA is concerned the MCA creates a group effectively of 'non persons' without effectively any rights to any self determination if they cannot pass a functional capacity test, as administered and interpreted by a person with power to decide.

    The cases where e.g. people clearly state they do not want want to leave their homes to enter residential care, but who cannot understand/ explain the risks in their home or suggest acceptable ways of reducing these to stay at home are 'non persons' without rights.

    The fact that a third party or substitute decision maker (not social worker / lawyer) might decide the risk of staying at home is no more than the risk in residential care (e.g. from abuses, insufficient staff to ensure fatal falls never happen or other such harmful things etc.) does not arise as the MCA is structured. It negates the voice and wishes of disabled people- or even life's realities. That needs to change.

    Protection 100% is not possible- child protection failures and problems nationally are throwing this up repeatedly. Lets accept the same for adults, but find ways to do what is sustainable in ensuring a level of safety and balancing this with the fact risk is part of life which cannot be erased.

    The world is not a safe place- all these laws prohibiting the rights of disabled people will not necessarily make them safer or happier. THE MCA is not empowering in the slightest.

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    Replies
    1. Hi anonymous - I agree that the MCA is not empowering, and I think we could learn a lot from approaches taken elsewhere. I hope that this General Comment will provoke more discussion in the UK.

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