We all have to do things we don’t want to …

I heard it again today – “we all have to do things that we don’t want to” and I can’t remember exactly what came after that. But they were talking about my son and how it might be in his interests to be made to go to college even though he has made it perfectly clear to me that he wants his time at college to end at the end of this term.

And I really have lost track of the number of times I have heard this phrase and how glibly and easily it has been used to toss aside the rights of people who struggle to communicate their thoughts and their wishes. But it’s not the same. When you do something you don’t want to, you make a judgement and a decision along the lines of :

You do not want to [go to work]  but [you get paid money] so you overcome your reluctance.

It may not be enough money but at least you have some measure of psychological control over your ultimate decision. There is a condition that makes doing something we don’t want to do, more acceptable and in the end if you decide that it is not enough money or if that particular career is intolerable, then you can change things. For many people with severe learning difficulties it doesn’t work like that it’s more like:

You do not want to [go to college/day service] but [ you have learning difficulties] so you have to go.

There is no condition that will help a person to overcome their reluctance – there is only the stark juxtaposition of reluctance and compulsion and the only way that they can deal with this, is to acquiesce or exhibit challenging behaviour.

Its not the same – it’s the difference between tolerable and intolerable.


The Ideas in our Minds

In an earlier blog I wrote about how language is central to common sense ideas about being human. For most people it is the ability to speak and use language that defines us as human and for people with severe learning and communication difficulties it is the apparent lack of a language that marginalises them and undermines their right to be seen as fully human. But as I have argued, the problem isn’t a lack of language, the problem lies in the way in which we define and conceptualise language.

For most of us language is simple – its words and text and the dominant status of language defined in this way is illustrated within the field of child development where this type of conceptualisation of language has come to predominate:

Language is first and foremost symbolic. Sounds, words and sentences represent and capture an infinity of possible meanings and intention. We can produce and understand and think about an infinity of possible statements, questions, commands or exclamations

(Lust 2006)

There is nothing wrong with this type of statement but the narrowness of this definition, with its emphasis on written and spoken text has a profound effect on the everyday lives of people with severe learning difficulties.

Why? Well it’s complicated, but the nub of it is that if we presume that somebody can’t speak or that they are without language we tend to believe that they can’t think. And that if they can’t think? Well what was it that Descartes said: “I think therefore I am”, ergo those that do not think – are not. So the way in which we conceptualise language matters and it can be defined inclusively but in-order to explain how, I am going to have to wade through a little socio-linguistics and the field of semiotics in particular.

Socio-linguistics and stuff

One of the founders of socio-linguistics was a chap called Ferdinand Saussure who delivered what were probably a very boring series of lectures in Geneva between 1907 and 1911. In fact they were probably so boring that he never got around to writing a book about his theories but fortunately for him a couple of his students collated his work and published it posthumously in 1916 in a book called “Cours de linguistique generale”. It was a very influential work and most of the debates around language and in particular its sociological function are positioned in some way by his ideas. I won’t wade through all of them but there are a couple that I think are important to my argument.

The first is his definition of the “sign” as the carrier of meaning in language. For Saussure the sign as a whole comprises of two parts “the signifier” which is the form of the sign and the “signified” which is the idea that the use of a “signifier” creates in our minds.

The second was his argument that language systems are “arbitrary” and that they define their meaning from the structure of relationships between signs. Although apparently he did acknowledge that signs may have a referent (ie. they might actually refer to something in the real world) he argued that the relationship between the sign and the referent was irrelevant. In a practical sense he meant that it didn’t matter whether you called a tall thing in a forest a “tree” or a “Baum” or “L’arbre” it’s the relationship with other words that makes it meaningful and if you think about it he seems to have a point.

But there are signs where the relationship with the referent is more obvious and this is particularly the case with visual languages that may be used to support the communication of people with severe learning and communication difficulties. Whether its Photo-symbols, Makaton, PECS or objects of reference, the form of the sign being used creates a direct visual association between the form of the sign (the signifier) and the idea that is created in a person’s mind (the signified) and it is this that makes visual language more accessible to people with learning severe learning difficulties.

There are plenty who would argue that this doesn’t necessarily make a visual communication system a “Language” in the way that Noam Chomsky might define it. For him language is an innately human capacity based upon a shared ability to understand and produce the universal grammar of language systems. I have never read anything by Chomsky on the “ language” of people with severe learning difficulties but it is difficult to imagine him having much time for the idea – and I think it is probably safe to presume that a Chomskian perspective would be that people with severe learning difficulties are beyond language because they lack the biological capacity.

It’s perhaps for this reason that behaviourist inspired approaches to language development have tended to find implicit support from the families of people with severe learning difficulties. Principally through interventions such as Applied Behavioural Analysis. These draw their inspiration from conceptions of language that see it as something that is learned and taught. Enormous effort is put into programming language and appropriate behaviour, meaning is created through through continuous repetition and association.

This is all well and good, language is innate and language can be learned. Despite what the evangelists of both of these approaches argue, accepting that both approaches have something to contribute to our understanding of the language of our children would seem to me to be perfectly reasonable. But there is something missing – something that comes from years of interaction and shared understandings. Shared meanings that evolve within families and close circles of support, meanings and interpretations that are taken for granted and embedded within the fabric and habits of everyday life. What is needed is an approach to the language of people with severe learning difficulties that recognises the role of interaction in the construction of shared understandings – and fortunately there is such an approach.

According to these approaches it is interaction and social context that leads to the co-production of meaning and language. The work of early the Soviet psychologists Volosinov and Bahktin, the social semioticians Hodge and Kress (1988) and later language development theorists such as Tomasello (2003),  provides us with the theoretical basis with which we might start to deconstruct the language of our families. Of course few of these language theorists would consider applying their theories to the language of people with severe learning difficulties. I am simply taking it further and arguing that this use of sign and symbol, this interaction, this co-production of meaning should be recognised as language and that the decision as to whether a gesture should be accorded the same linguistic status as this text is an arbitrary choice.

Which kind of brings us back to Saussure – who argued that the form of the sign (the signifier) is arbitrary. Ultimately the decision to define language according to the relationships between signifiers rather than signifieds is as arbitrary as any other – which is why I would argue that if you want an inclusive conceptualisation of language then your starting point shouldn’t be the form of a sign, but rather the other element of the sign – the signified – the ideas in our minds.

So when people ask me if my son has language, I am tempted to answer with – “ well it depends upon what you mean by language ”. Could he read this article? Probably not. But does he have ideas in his mind about his everyday life then yes, he undoubtedly has. Some of those ideas he is able to share with words, others he shares through the use of symbols, photographs and objects of reference and others still, with his behaviour. But the expression of that language will only happen if the people around him acknowledge the existence of those ideas and his right for his language to be part of our language, so that he can communicate them in the way that he needs to and has to. Because it is not words and text that makes us uniquely human – it’s the ideas in our minds.