I’m writing this because LB’s death and the campaign itself demonstrate two really important things: firstly that – at a time when so many aspects of social policy and social attitudes are going rapidly backwards – we need to hang onto what we have learnt in the past about the importance of everyone’s human rights and how to promote them; and secondly that if we really want to bring about positive change we have to do something fundamentally disruptive to existing systems. If the ‘abject failure’ of the Winterbourne View transfer programme teaches us anything, it is that you can’t change outcomes unless you radically change the systems that are responsible for the problems in the first place. I’ll come back to this point.
The campaign is also making a quilt, made up of patches sent in by many different people. The photo above is the patch I’ve sent and it sums up one important issue I want to highlight.
‘Communication is at the heart of being human’. Sadly, some people will react to this statement by saying ‘But some people can’t communicate and you’re therefore saying they aren’t human’.
Such an attitude goes along with a failure to recognise how people can and do communicate. Communication isn’t restricted to being able to speak, or write, or use sign language. Most importantly, communication isn’t incompatible with significant cognitive impairment or what people call ‘severe learning disabilities’.
Communication is about recognition of a message being conveyed – it is a two way relationship and we should be paying far more attention to the ‘recognition’part of the relationship. Instead of saying ‘he can’t communicate’, we should be saying ‘I don’t understand how he communicates; I need to do more to understand, acquire more skills and knowledge, talk to people who know him better than I do’.
How many times have you heard someone say (as I heard only a few days ago): ‘X has severe learning disabilities and can’t communicate at all. She loves swimming and lots of different kinds of music’? My heart sinks when I hear something like this and even more when the speaker then goes on to describe X’s ‘challenging behaviour’.
The statement is both a denial of the human right to communication and – ironically – at the same time it is an unintended recognition that X has in fact communicated very effectively about what makes her happy.
Attitudes like this go along with a failure to focus on ourselves as a recipient of communication, and instead place all the responsibility on the other person. Such attitudes betray a failure to use and develop our own skills of observation and understanding; and a failure to use the skills and experience of those who know the person best and who understand how and what they communicate.
When I was doing research in the 1990s about the experiences of disabled children and young people living away from their families, it was very common to be told that a young person ‘doesn’t communicate at all’. We tried very hard to find people who had a different perspective on those whose experiences we wanted to explore, and if we were lucky we found people like the volunteer who came into a residential home once a week to spend time with one young man who we had been told didn’t have any way of communicating:
You have to wait a long time for him to react. Although if he’s feeling negative about something he soon lets you know – he screams and shouts when he doesn’t like something but it can feel very unfocused because it feels so extreme. It feels as if it’s just coming from inside him but actually when you think about it, it’s usually something outside himself that he’s reacting to…because his negative reactions are so obvious it’s quite difficult to see his positive reactions but they’re there if you really pay attention.
Imagine if everyone ignored you when you spoke or consistently misunderstood what you said. Imagine if people do things to you, for you, without paying any attention to what you say, to what you want, need or feel. Wouldn’t you ‘scream and shout’?
One of the things I try and do with most of the posts I write is to remind ourselves of what we’ve already learnt, and sometimes achieved, in the past. Many people who have contributed to the debate following both LB’s death and the ongoing failure of the Winterbourne Review Joint Improvement Programme have referred to the important work of those such as Jim Mansell and to, for example, the origins of Person Centred Planning. As Sara Ryan, LB’s mother, has written: ‘We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK’.
Just one of the key lessons from the past was encapsulated by Alison Wertheimer in a book she edited for the the King’s Fund about good practice in developing opportunities for people with learning difficulties.Published in 1996, it included many examples of understanding what people were communicating when they exhibited ‘challenging behaviour’, and how changing environments and activities, addressing health needs, and providing support in different ways reduced and eliminated such difficulties. Alison wrote:
Contrary to what usually happens, people with challenging behaviour need more rather than fewer choices, and more opportunities to control their lives in terms of what they do, where they spend time and who they are with.
We do actually have some mechanisms which would, as Alison recommended, give people who are locked away in ATUs etc more choices and more opportunities to control their lives. But these are not to be found in the kind of organisations described – in another publication from 20 years ago – as dominated by an Apollo culture:
Apollo was the god of order and rules, and these organisations try to divide up the work into neat and distinct areas, where everyone has a clear defined role. Each role has a job description and a defined area of authority, with clear lines of accountability and hierarchical systems of decision-making.
These organisations cope well with stability but struggle to deal with major change. There is a danger that change will simply be incorporated into the existing structure and have little impact, if cultural and values issues are not explicitly addressed.
This publication was promoting person centred planning and challenging the way support is delivered, but the analysis can be applied in a wider context. We have systems which result in people entering and remaining in institutional settings because housing isn’t available. We have systems which create additional support needs because health needs are unrecognised and/or untreated. We have systems which take mechanisms, such as direct payments and personal budgets, intended to increase an individual’s choice and control but which instead apply an Apollo culture of order and rules which undermines self-determination – there are many examples of this but Mark Neary’s experiences are just one.
A clear lesson from the past is that in order to bring about real change the entire system has to be disrupted so that the focus is on creating more opportunities for people with learning disabilities to communicate their preferences and experiences. We need something like Chris Hatton’s proposal that control of all the money currently spent on keeping people in ATUs (an average cost of £4,500 per week!) should be given to a ‘ninja task force’ which puts people with learning disabilities and families in charge and works to ‘develop local, individual supports for people moving out of these services’. A key issue will be the availability of housing – though there are lots of good practice examples of how to provide real homes for people with learning difficulties instead of tying money up in institutional provision.
One thing that most of the reports which follow ‘scandals’ in health and social care systems illustrate is that services which deny the fundamental human right of communication create at best ‘challenging behaviour’ and at worst abuse and neglect that can end in death. And this applies as much to, for example, older people as it does to people with learning difficulties.
In order to bring about real change we have to reconstruct systems and services that have as their main motivating force the ability to recognise and act on what an individual communicates about their needs. It is only by changing who has control over the available resources that we will have any hope of both protecting and promoting the human right of communication and of avoiding the wasteful expenditure on services which all too often fail those whose lives they are supposed to enhance.