Language, the MCA and the Right to Be

This is my second blog on identity, narrative and the voice of  people with severe learning difficulties. As the parent of a young man with severe learning difficulties I presume no right to speak on his behalf – but if I don’t who will?

For people with severe learning difficulties, the struggle for autonomy, begins in the minds of the people who are closest to them, it is institutionalised in the discourse of the organisations that are supposed to support them, and all of this is embedded and re-enforced by the taken for granted assumptions of the society and culture in which they live. Taken together these three social and cultural moments are the sociological tide against which people with a severe learning difficulties must struggle to establish their identities and their right to be seen as independent beings. Actually some times I think its far more than that – its the context in which they have to struggle to be recognised as human: The Right to Be.

The Cultural – Beyond Language?

Most people would probably accept that the social and cultural context in which we try to establish our identity has a profound effect upon our ability to construct a positive and coherent sense of ourselves. It’s hard enough for most of us but for people with severe learning difficulties it’s so much more difficult. There are their impairments and these will undoubtedly shape a person’s struggle to establish their story of themselves. But I know and have known a good number of people with severe learning difficulties and from my experience their impairments do not stop them from trying to establish and project their own identity. The barriers to the emergence of a person’s identity are set within our  culture and the assumptions that we make about what it is that defines us as human and the way in which we represent people with severe learning difficulties.

Probably the most important assumption, is the idea that it is language that defines us as human. Our society and our beliefs about what it is to be human are based on the idea that it is the emergence of language that defines us that. Fine, but how often will you have heard a statement linking the evolution of humanity with the emergence of language and not considered its implications? We take it for granted that humanity has language  and in juxtaposition to this is another idea, one that is rarely expressed beyond the walls of universities and medical ethics committees, existing almost at a subconscious level: namely that people with severe learning difficulties are beyond language and that they are therefore, tragic and in some way less than fully human. Their personhood is doubted, they are therefore a life that is somehow less valuable than others. A life not worth living or one without meaning or quality. In fact to paraphrase something said to me only recently –  What quality of life can he have?  He’d be better off dead.

But the severely learning disabled children and young adults I have known have never really been beyond language, they just struggle to learn mine and yours. Their language has been idiosyncratic and informal and rarely learnt by experts, who seem too busy developing symbol systems that I struggle to understand. But language has always been there, often unnoticed and unacknowledged. You just have to define it differently – not as a formal uniquely human  system – but as a desire to interact and communicate something of your self. Objects, behaviour, symbols, gesture, place, sequence, time all can become a signifier, each and all can have meaning, all that is needed is for their intention to be recognised as an act of language and symbol.

But if a person’s attempts at interaction are unacknowledged, if their right to language is denied by the notion that language has to be formal and systemic – then the political consequences can be enormous and throughout history this has had a profound effect upon the lives and sometimes the very existence of people with learning difficulties. The idea expressed to me that, the life of a severely learning disabled young man,  a life beyond language, is not worth living and is not a new idea. And this rationality has been used throughout history to justify the killing of learning disabled people. Sometimes systematically, sometimes through neglect and the recent holocaust remembrance ceremonies could have been an opportunity for us all to reflect on this but they weren’t and perhaps that tells us how little people really care about what happened to people with learning difficulties during the holocaust.

However, whilst the idea ‘that only language makes us fully human’ has not always had the consequences it had under the Nazis, it is often articulated into representations of severely learning disabled people as a waste of resources – in particular in times of austerity or conflict. During the First World War and Second World Wars the death rates for people in asylums doubled and sometimes trebled and indeed we only have to look at the average life expectancy of people with learning difficulties and the recent ramblings of the Conservative MP Nigel Evans to see how the broad range of human rights of this community might be prescribed on the grounds of cost and economies of scale.

It is in this cultural milieu that a person with severe learning difficulties must struggle to establish their language, their story and through these their sense of self and identity. And its no wonder that so often that struggle goes unheeded.

The Organisational – the micro-politics of everyday life?

If the cultural context is one that seems to deny the right of a person with severe learning difficulties to be recognised as fully human, its challenge is matched by the complexity and sheer scale of the struggle that is experienced in the micro-politics of peoples everyday lives. In particular the struggles between families and the organisations that are supposed to support them. It is a struggle that is generally characterised by a tendency to stereotype. Despite the rhetoric of partnership working and collaboration the reality is that families are often seen as part of the problem. And much as we might wish and hope that families always act in the best interests of their disabled children and adults. It has long been recognised that we don’t always do so. There is a significant body of research citing instances of abuse by the parent’s of disabled children and young people and the Disability Rights Movement has made a powerful case arguing that one of the greatest barriers to the emancipation of disabled people and learning disabled people in particular is their families. Families are often represented as presuming that their learning disabled children are incapable of becoming adults, with their own identities and their own sense of themselves.

I believe that this perception of  families played an important role in the way in which the Mental Capacity Act 2005 was drafted. It can justifiably be argued, that the introduction of the Mental Capacity Act represented an attempt by the last Labour government and practitioners to overcome the presumption of incapacity that families and many practitioners can be guilty of. It seemed to be steeped in good intentions and its principles challenge many of the assumptions that I have alluded to above.

And whilst it has had some success, it is not popular and its implementation has been problematic at best and in the case of some disastrous. The expectation that it would help to transform the lives of people who may lack capacity has quite frankly not been met. Some of this will be due to poor roll out and training and most of this was covered in the recent House of Lords enquiry, but I believe that there are two other factors:

• Firstly, for many people the idea that somebody with severe learning difficulties has preferences and can make choices is counter intuitive, most people simply do not believe that people with severe learning difficulties can make decisions about their lives and no amount of government legislation will make them believe otherwise. This I believe is because of the pervasiveness of the ‘beyond language’ narrative;

• The second factor is the bias against families that is written into the structure and processes of the Act. It may have had the original unspoken objective of protecting people with learning difficulties from the presumption of incapacity by parents – but it had the by product of undermining a person’s ability to communicate their wishes and preferences.

With the potential for families to be side-lined in this way, their knowledge and expertise goes with it, as does their nuanced insight into a person’s behaviour and use of sign and symbol. In short the curators of a  severely learning disabled person’s language and narrative are side-lined and with them goes a cornerstone of a person’s ability to represent themselves. They must begin again, the laborious process of rebuilding the narrative of their self, which has to be re-constructed in the context of new relationships with new people – most of whom will have moved on before more than a fraction of their story has been told.

In the minds of the people who are closest 

If families are the principal curators of a person with learning difficulties language and narrative, and if it is sometimes argued that we are at times also a source of their oppression. The solution never lay in in excluding us from decisions in the way that the Mental Capacity Act has done. The solution has always lain in the minds and the expertise of the people who are closest to them. In knowledge of parents and in the expertise of an individuals closest practitioners, which when combined becomes far more than the sum of its parts.

But how do we ensure that this form of collaboration is embedded in the everyday lives of people with severe learning difficulties and in decisions about their lives? The solution to this dilemma is already out there and elements of it are being practised by families and practitioners across the country. It lies in focusing on the person at the centre of the plan and their Circle of Support. Its nothing new, the kind of thing that was being advocated in Valuing People. Not just for planning services but also for developing insight and a variety of perspectives on a person’s communication and voice. In this way the Circle of Support becomes the place in which their acts of communication and voice are shared – where they are deconstructed and made meaningful. It is in this context that the knowledge of the people who know a person best is most effectively utilised and their language made meaningful.

If you then formalise the constitution of a person’s Circle of Support and amend the MCA to make the Circle of Support the formal voice of the ‘people who know a person best’. You then limit the ability of a practitioner/authority or parent to make decisions that do not have the support of a Person’s Circle of Support – the people who know a person best – the people who have the deepest insight into their communication and interaction. With a relatively small amendment the MCA becomes a genuinely collaborative vehicle for the language and narrative of people with severe learning difficulties. And in this context a new culture could be created, one that is not only able to deconstruct and represent the language of a person with severe learning difficulties, but also to provide a place where they are able to write and perform their story and claim – The Right to Be.

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