One of the disadvantages of having studied social science and science, is that you can end up spending far too much time thinking about really obtuse things, like the nature and meaning of knowledge. But strangely, of all the things I’ve learnt in formal education it’s been one of the most useful in helping me to understand why the families of people with learning and communication difficulties matter, and why what we know matters even more.
In the sciences you get introduced to concepts like empirical observation, measurement, experimentation, data, scientific theory, paradigms, causation, replicability, hypothesis testing and proofs. These are the building blocks of scientific knowledge and as an approach to making sense of the world they are really useful and have helped to transform the world in which we live. But the development of scientific knowledge is contested and evolutionary, some theories come and go, others are transcended by new paradigms of scientific knowledge. A theory that might seem to make perfect sense can be undermined or transformed by the discovery or observation of new phenomena. But broadly speaking science builds upon itself.
In the social sciences things are a little different. You get some people trying to do the same thing that a natural or physical scientist might do. They collect data, they observe and measure, they construct hypotheses and test, and then they develop theories about what it is that they have observed, measured and tested. Broadly speaking they think that people are subject to the same laws and principles as science and that scientific methods can be applied at least paryially to the social world. In contrast to this approach you have the relativists, post modernists and post-structuralists. Their approach is based on the idea that there are no truths and facts, because knowledge is relative and the things we think we know, are actually a product of language and the thing that makes them true is power.
I’ll be honest coming from the background I did, my first thought on this approach to social science was that it is nonsense. Of course truth and facts exist, without them we would never have been able to put a man on the moon, or drive a care or invent computers. The post-structuralist response to this kind of argument is usually that whilst the real world may well exist we can only make sense of it through language. It is therefore only through language that the truth exists. I still have some issues with this, but it is important, and it has huge implications for people with learning disabilities and/or ASD especially those with communication impairments. Anyway, most social scientists seem to try and adopt a position based on elements of both, with varying degrees of emphasis on one approach or the other depending on their subject or specialism.
So, what has any of this got to do with people with learning disabilities and/or ASD, their families and practitioners. Well actually quite a lot. Learning disability and autism can be studied from the perspective of the natural and the social sciences. If you ask a neuro biologist what autism is they are likely to focus on the findings of studies that have identified anatomical abnormalities in different parts of the brain. A psychologist is more likely to define autism as a triad of cognitive impairments and would use a diagnostic tool such as DSM V to diagnose and assess the severity of the autism. Whereas a good teacher is likely to focus on a person’s interests and abilities and use these to develop a learning plan scaffolded according to their particular learning needs and objectives. Whilst the neuro biologist would undoubtedly see themselves as a scientist; I suspect most teachers wouldn’t.
In between, the lives of people with learning disabilities and/or ASD are affected by the knowledge of a whole range scientists and social scientists. Each approaching the person with a viewpoint that is profoundly shaped by their professional background and with a certainty that is underpinned by their professional status. Because as much as my scientific self may rail against the notion, knowledge is intertwined with power. Professions use a combination of scientific method, language and a variety of instruments of power to define the parameters of what it is that they know and consolidate their professional status.
An important part of how that is done, is that in partnership with politicians and the state they institutionalise their expertise and in this way legitimise their interventions, often at the expense of other people’s rights. The Mental Health Act and to a lesser extent The Mental Capacity Act, are classic examples of how the power and primacy of a profession and their form of knowledge can become an instrument of the state. Each places decision making responsibility in the hands of a professional or at best a small group of professionals, and whilst there is an expectation that the professional should consult with the people who know a person best, ultimately control and power over an individual’s life rests with the professional. Even though they may never have met the individual concerned. It is inevitable that any decision made in this way will be based upon a partial understanding of the individual concerned.
Despite it’s often partial nature, knowledge that has been legitimised in this way will not only be used coercively it will also be used to marginalise challenges to their dominant ideas about the nature of things and the status of their practice. People believe things to be true because of who said something and not because of what they said. The social status of a practitioner’s knowledge gives it an appearance of legitimacy that it doesn’t always warrant. You only have to look back at some of the treatments that have been used in the old mental hospitals, from lobotomies to electric shock therapy and as this quote indicates extensive overuse of drugs:
Sixties was an era of great enthusiasm for the new psychiatric drugs that had become available since the mid-1950s. David was chiefly prescribed chlorpromazine (Largactil) and sedatives. He was not given the ECT, insulin coma therapy, narcotherapy, and sometimes leucotomy, handed out to some of his fellow patients. In fact, he seemed to receive little of anything that could be described as therapeutic
Some of these interventions are now rightly viewed with horror and yet some remain. All were once seen as the only way in which people in these institutions could be “treated”; they were reinforced and underpinned by science and its methods, and the institutional certainty of professional bodies. Yet time has shown them to be what they undoubtedly were: flawed and damaging. So where does this leave us?
For me the thing that characterises the weaknesses of the current way in which we support the place of people with learning disabilities, is our failure to manage and combine the different kinds of knowledge that need to come together to deal with the difficulties that an individual might be facing. In particular, the failure to incorporate the uniquely deep and subtle understanding that families often have of their loved ones. Families bring decades of experience and learning, and they will often have an almost unconscious understanding of an individual’s mood, gesture and behaviour. For people with communication impairments, they are often the decoders of an individual’s personal language and the narrators of their personal histories, and as well as that, they will invariably have a wealth of strategies for managing and dealing with a whole range of situations. Yet as we see time and time again that knowledge is not given the status is deserves in law and neither is it nurtured and built upon.
The roots of the failure to include the knowledge of families are complex. As I have argued, differences in the status of the respective knowledges are undoubtedly important. The knowledge of a psychiatrist, out-trumps that of a psychologist; the knowledge of a psychologist that of a therapist and so it goes on. And somewhere down the line you get families. And in addition to this variation in status, relationships between practitioners and families will often have soured by the time that families get to the transition to adult services. Years of battling the special educational needs system, or of being ignored by it, often leave families feeling battered or cynical and invariably labelled as problematic.
And there are a number of practitioners who are too ready to seize upon the principles of the disability rights movement and the Mental Capacity Act or plain old parent blame, in-order to stigmatise and disempower families. And one of the great shocks for the parents of disabled children, as their child grows into adulthood, is the ease with which they and their views can be set aside. The family that had to be listened to when their son or daughter was a child becomes a useful but marginal perspective in the decision making of others.
But it is too simple to paint families as the victims and practitioners as the villains in all of this. Sometimes we need to remember that most/many of the people who work in health and social care, do it because they want to improve the lives of the people they are working with (although some don’t). There are times when we also have to take some responsibility for the nature of the relationship that we have with the practitioners who are a part of our sons’ and daughters’ lives. Not just because they might sometimes deserve it, but also because it is invariably in our daughters’ and sons’ interests. But as most of us know there are occasions when it can be difficult or even wrong not to challenge professional practice.
However the problem for families is that when they challenge a practitioner they end up in conflict with the system. The challenge might come about because of a misunderstanding and the practitioner might well have been working with the best of intentions; or it might have come about because the practitioner has made a mistake and really isn’t very good at their job. Either way when faced with this most practitioners will withdraw into the protection of their institution and the system that sustains it. And unfortunately, regardless of the rights and wrongs of the situation, the system treats any kind of challenge as a threat to one of its members and will instinctively defend them, the status of their knowledge, and their practice.
The consequences for the person with a learning disability are significant because the network of support that might have surrounded them, is transformed and effectively becomes two front lines. And the person disappears into the no-man’s land that exists between the warring factions. However, this situation rarely lasts for long because inevitably the state and its institutions will take control and the family will get marginalised. The moment that this conflict begins, the real victim will invariably be the person with a learning disability or ASD, because regardless of how convinced an institution may be of the quality of its practice, if it is in conflict with the people who know a person best, something profoundly important is lost.
And the thing that is lost is not just the things that a family may know, it’s a unique kind of knowledge. It is the product of the knowledge and understanding that everybody involved in supporting an individual can bring to that person’s community of support, regardless of their profession or social status. It is the rigour of a scientist, the empathy and professionalism of a rights based social worker, the insight and experience of a parent who loves and most of all the empowered self-awareness of the individual themselves. Taken together these different kinds of knowledge can enable an understanding of a person and a situation that is far richer than any that a single scientific or familial perspective could provide. It is also more likely to respect their rights and stand the test of time.
So, if I were looking for a perspective from which to review the mental health system – I’d start with all of them.