Day 86: Communication and being human #107days

Day 86 of #107days was adopted by Jenny Morris. Jenny blogged early on in the campaign and has also been interviewed by journalists for a number of pieces that relate to LB. Jenny’s expertise and knowledge is very valuable and today she offers a blog post with her thoughts and knowledge on communication.

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’.^[1]  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.^[2]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^[3]:

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.

^[1] Morris, J. 1998. Still Missing? Vol 1: The experience of disabled children and young people living away from their families. The Who Cares? Trust.

^[2] Wertheimer, A. ed. 1996. Changing Days: Developing new day opportunities with people who have learning difficulties. The King’s Fund.

^[3] Sanderson, H. et al. 1997. People, Plans and Possibilities: Exploring person centred planning. Joseph Rowntree Foundation.

Day 46: The violence of disablism #107days

Today was adopted by Katherine Runswick-Cole; when I asked her why she’d got involved with supporting #JusticeforLB and #107days, this is what she had to say:

I first met Sara at a Disability Studies conference, we were both studying for our PhDs. Meeting Sara was exciting because we shared the same research interests but also because we were both mothers to young dudes. Sara and I stayed in touch, wrote a couple of academic papers together and every so often we would find ourselves at the same conference and have a bit of a gossip about life, the universe and everything! In fact it was Sara who introduced me to the joys of Twitter and, of course, I followed her blog.

Like many other people who have been touched by #JusticeforLB, I never met Connor, but through knowing Sara and reading her blog, I felt as if I had. The stories Sara told with such love and humour remind me of my own dude, and her family stories so often overlapped with ours.

Katherine, has written today’s post with Dan Goodley (who you’ll also meet again on Day 100). This is what she is up to:

I’m now Senior Research Fellow in Disability Studies & Psychology at Manchester Metropolitan University and I’ve been invited to give a paper on the theme of disability and violence on 6th May, 2014 at the Norwegian Network of Disability Research 6th Research Conference in Lillehammer, Norway. The blog posted today, co-written with my friend and colleague, Dan Goodley reflects on some of the things I’ll be talking about in Norway, including #JusticeforLB.

This is what they have to say:

The Violence of Disablism 

Like many people, we’ve been following the #JusticeforLB #107days closely. We’ve been inspired by the actions of others in support of the campaign and horrified by the revelations of the terrible treatment experienced by people with learning disabilities that continue to unfold as the #107days continue.

We’ve followed many of the blogs that have commented on the tragic death of LB including those of Chris Hatton, Rich Watts, George Julian, Jenny Morris and of course Sara Ryan‘s own powerful and deeply moving blog, and we’ve wondered what we have to add to what has already been said so clearly and carefully by many others.

However, it was Jenny Morris’ claim that Connor was a victim of ‘institutionalised disablism’ that prompted us to write this post. We agree with Jenny and her comments made us reflect on what we had previously written about disability and violence.

In 2011, we published an academic paper called “The Violence of Disablism” in the Journal of Sociology of Health and Illness. The paper was written as part of a wider research project focused on the lives disabled children (“Does Every Child Matter, post-Blair?: the interconnections of disabled childhoods”). Violence was not initially a focus for the study, but, sadly, in our work with children and families violence emerged as a distressing and disturbing theme.

We heard about disabled children being bullied on the bus, in toilets and on the street. We heard about families being marginalized and excluded because their children were “different”. We heard about schools where children were man handled and emotionally bullied by staff. We described this as the “violence of disablism”.

The violence that Connor experienced tragically ended in his death: the report of inquiry into his death documented that he was subjected to numerous incidents of ‘face down restraint’ in his 107 days in the unit. In the end his life was rendered so value-less that no one thought it worthwhile to check on a young man with epilepsy while he was alone in the bath.

The report of inquiry made it clear that individuals played their part in Connor’s death.  It is right that the staff members who left Connor alone to drown should be held to account, but there is a danger that if we focus our anger at individuals alone, then we will be failing Connor and all the dudes who continue to be subjected to the violence of disablism. Focusing on individuals allows wider communities to distance themselves from the bad acts of few bad individuals. Much of the response of the service provider has been to suggest that focusing on individuals means that we don’t have to pay attention to the multi-faceted, mundane and engrained ways in which the violence of disablism operates in peoples’ lives. We desperately need to address the systems and cultures that contributed to Connor’s death.

Winterbourne View and Slade House were located on industrial estates, how many other Assessment and Treatment Units are located on the margins of their communities? What other group of people, apart from people with learning disabilities, would ever experience a ‘stay’ or, indeed, live on the edge of an industrial estate? Currently, despite Winterbourne JIP, 1,500 people still live in ATUs, 14 of them are children.

As we saw in our research project, the processes that de-value the lives of people with learning disabilities are everywhere and they start when disabled children are young. To recognise that we live in a world that is inherently disablist permits us to start addressing a number of urgent questions:

• Why are adults with learning disabilities endlessly placed in the periphery of our communities?
• What kinds of things do we value about human beings and how might we broaden our values to include those human beings who might not fit with the ‘normal’ category?
• How helpful is it to talk about normal? Might it be more helpful to think of all of us as abnormal, anomalous, different and divergent?
• What needs to be done NOW to honour #JusticeforLB?

Katherine will be sharing this paper in Norway in a few days time; as the ripples of what happened to Connor, and the JusticeforLB campaign, spread ever further, it really is time for change. The final word goes to Katherine (and Sara):

In the midst of the tragedy and devastation that follows Connor’s death, I do believe that change is possible and that through the #107days tweets, blogs, papers, presentations and marathons, we can begin to build that change. So our post is written as we hold on to Sara’s words that “if anyone can effect change in the way in which learning disabled children/adults are treated, I’d lay my money on a bunch of (raging) mothers of disabled children”.

#RagingMother