Friday, 5 April 2019

The enduring influence of Mike Oliver

On a number of occasions I tried to tell Mike how influential his ideas were in the context of specific policy developments that I was involved in, such as ‘Improving the Life Chances of Disabled People’, which was the first time the UK government formally adopted the social model of disability. But he was very pessimistic about the direction of both disability policy and also about the impact of his own work, and his response each time was to express frustration at the limited nature of any progress - and to advise me not to leave it too long before I retired (he was right about that!).

But Mike Oliver’s work (much of which is available on the online Disability Archive) was important and influential, and it continues to be, particularly in understanding precisely why progress has been so slow. So many people who are critical of current policies affecting disabled people are using a framework and analysis which stems from his work, but this is not always obvious.

Mike wrote "For me, all social theory must be judged on three inter-related elements: its adequacy in describing experience; its ability to explain experience; and finally, its potential to transform experience.“ His writings achieve all three of these elements and, as a tribute to him, I thought I would look at one particular issue of current concern for disabled people and make the links explicit. In so doing, I’ve highlighted what, to me, are some key aspects of the theoretical framework that makes up Mike’s legacy. 

Before doing that, however, I think it’s worth reminding ourselves of how the social model has the “potential to transform experience” for individual disabled people (the issue of transforming experience at a societal level is discussed below).   I consider myself very lucky that - at the time I became disabled (the early 1980s) - disabled people were increasingly articulating a different way of seeing themselves and which opened up opportunities for collective action to bring about change.  Much of this was down to the liberation that the social model of disability offered.

Liz Crow spoke for many of us when she wrote: 

My life has two phases: before the social model of disability, and after it. Discovering this way of thinking about my experiences was the proverbial raft in stormy seas. It gave me an understanding of my life, shared with thousands, even millions, of other people around the world, and I clung to it……For years now this social model of disability has enabled me to confront, survive and even surmount countless situations of exclusion and discrimination. It has been my mainstay, as it has been for the wider disabled people's movement. It has enabled a vision of ourselves free from the constraints of disability (oppression) and provided a direction for our commitment to social change. It has played a central role in promoting disabled people's individual self-worth, collective identity and political organisation. I don't think it is an exaggeration to say that the social model has saved lives.

The social model of disability not only provides a transformation in the way disabled people have made sense of their lives but it also gave individuals a way of thinking which supported collective action. And often it was reading The Politics of Disablement that enabled them to do this. To take just one example,  Sunny Taylor, a young American woman who became involved in protesting disabled people’s right to personal assistance, read Mike’s book and concluded from it that: 

Disablement is a political state and not a personal one and thus needs to be addressed as a civil rights issue.……In our society it is not the impairment that is the only reason for dependence; it is our impaired system of social services.

There are many contemporary issues which can best be described, explained and potentially transformed by applying the social theory set out in The Politics of Disablement and other writings, and I may write further blogposts to explore them. Here I’m going to focus on just one: the incarceration of people with learning disabilities and/or autism in Assessment and Treatment Units and the failure of current government policy to enable them, as articulated by Article 19 of the UN Convention of the Rights of Disabled People, “to live in the community, with choices equal to others”.

Note: Social model language would use the term 'people with cognitive impairments' rather than people with learning disabilities, and this would be my preferred term.  However, people who are involved in the struggle against ATUs tend to use the term 'learning disabilities'.  This is often because the legal and policy frameworks within which they are trying to get access to support use this term. 

Mike provided us with the starting point for understanding this - and other aspects of disabled people’s experiences - when he argued that disability is socially produced, both as an individual problem requiring medical treatment and as a social problem.  This enables us to move away from the 
individualising of the experience, a feature which is so key to the ideology dominating our current politics and the associated social policies.  

As he explained, “to say the category disability is produced by capitalist society in a particular form implies a particular world view. Within this world view, the production of the category disability is no different from the production of motor cars or hamburgers. Each has an industry, whether it be the car, fast food or human service industry. Each industry has a workforce which has a vested interest in producing their product in particular ways and in exerting as much control over the process of production as possible.”  

We can see today how a whole industry of services and occupations are based on diagnosis and treatment.  It is those working within these services who exert control over, not only how they define the problem but also the responses to what they have defined as the problem.  The ATU part of this industry has grown up in order to treat the product of ‘behaviour that challenges’. People whose behaviour is so characterised are produced as a social problem by the industry and services which have grown up to respond to their needs and that of their families. 

A social model analysis turns the focus from the individual to the context in which they experience their condition. So it is the characteristics of the environment and of support which are identified as a problem, in that they fail to accommodate different requirements associated with, for example, sensitivity to light or noise, or an intolerance of changes in routine, or response to crisis or trauma. Changing the nature of the problem is the first step to acknowledging and respecting the most basic human right to communicate and the fact that, far far too often, our society fails to do this is resulting in incarceration and the most appalling treatment. 

As Alexis Quinn, author of Unbroken, told the BBC’s Victoria Derbyshire Show: 
“When you are moved, and suffered a crisis, for me my brother died and I had just given birth, and you enter a ward which is by nature a very chaotic place, it’s not your routine, it’s unfamiliar, it’s very sensory-charged, it’s very noisy.  Any behaviours that you then subsequently display, autistic behaviours, behaviours to calm yourself down, so it might be pacing, it might be stimming, for example flapping, or something like that, it can be met with force, with restraint, with seclusion….I was locked up in these units [for four years] and my behaviour just got worse and worse and worse until I became what they were describing me to be….I looked insane, my mouth would twitch, my face would contort [because of the drugs]. 

So Mike’s work enables us to understand the production of a social problem which ATUs are designed to respond to, but his work also helps us understand why, despite much hand-wringing by government and media, people are still admitted and remain in them, sometimes for many years.

We need to understand this because there has been widespread recognition that people should not be kept for years in these institutions and yet little has changed. Since the exposure of what was going on in Winterbourne View ATU, by a BBC Panorama programme in 2011, the issue has not only continued to be highlighted by broadcast media but also by campaigners, and by a number of journalists, newspapers and websites.  And government has attempted to respond by setting up a Transforming Care programme with the goal of reducing the numbers of people in ATUs.  The first programme started in 2012 and committed to reducing the numbers of people in ATUs by 2015.  When this failed, a further programme followed, intended to reduce numbers by March 2019.

There have been arguments about whether such a reduction has occurred - with the data made obscure by the fact that the baseline figure against which progress was to be measured had to be revised because people were ‘discovered’ to be in in-patient settings for whom there were no records. But with well over 2000 people still recorded as in-patients,  admissions and delays to moving out continue, and there has been an increase in the numbers of children and young people under the age of 18 admitted to ATUs. The likelihood of significant reductions in the use of such provision by 2023/24 - the government’s latest commitment as set out in the NHS Long Term Plan - is undermined by the fact that new units continue to be built

Many people with good intentions make promises that things will change, and some try hard to create the conditions which enable people to thrive - though too often this is only possible because of the efforts of family members who are let down by health and social care services.  A short BBC documentary about Spencer Kay illustrated so clearly both how responding to someone’s needs enables them to thrive but also how this is often only achieved by family members sacrificing their own needs.  Spencer’s family struggled for decades to keep him out of an institution despite inappropriate and inadequate responses by statutory services.  As his sister says: "Spencer is gentle when you learn what Spencer needs and work out how he is interpreting the world”.

The NHS Long Term Plan made the commitment that:  “local providers will be able to take control of budgets to reduce avoidable admissions, enable shorter lengths of stay and end out of area placements. Where possible, people with a learning disability, autism or both will be enabled to have a personal health budget (PHBs).”  But none of these plans tackle the underlying causes of why we have incarcerated people.  In order to understand what these are we need to apply Mike Oliver’s analysis of how the production of disability is underpinned by the structures and economics of health and social care.

This is not to say that the historical materialism which was at the heart of Mike’s sociology was an economically determinist position.  Rather, as he wrote in The Politics of Disablement: “The point being made here is not that economics determines politics but the more limited one that the politics of social policy is circumscribed by economic considerations”. Since the late 1970s, Britain’s political economy has been dominated by the impact of global capitalism, with governments of all persuasions pursuing policies which expanded opportunities for private capital. One associated social policy was the ‘purchaser-provider’ split introduced in the 1990s within both health and social care which has meant that international finance capital identified profit-making opportunities, resulting in considerable amounts of public money being tied up in purchasing buildings-based services (residential and nursing homes, and private hospitals). 

If Clinical Commissioning Groups and social services authorities are to be able to make available the community-based services to enable people to move out of the mainly private institutional provision that people with ‘behaviour that challenges’ are in, there would have to be initial additional funding devoted to community-based services while money was still tied up in institutional provision.  However, such a requirement comes up against the political ideology determining the distribution of our society’s economic surplus: as The Politics of Disablement explains “societies which produce very large economic surpluses will almost certainly have established elaborate mechanisms of redistribution; but who gets what amount will be significantly influenced by the ideology underpinning this redistribution process”.  

The ideology underpinning the redistribution of our society’s economic surpluses has, since the late 1970s, resulted in the widespread assumption that income taxes must be as low as possible and that taxing wealth is counter-productive. Since 2010 we have had governments whose stated intention is to significantly reduce levels of public expenditure: thus while the Office for Budget Responsibility says the NHS needs a real terms increase of 4.3% per year to keep up with demographic and other changes, funding has only increased by 1.2% per year since 2009/2010; and, although some additional funding has been made available for social care for 2018/19 and 2019/20, official data confirms that this has not made up for the real terms reduction in social care funding since 2010 at a time of increasing demand and costs.

If people currently incarcerated in institutions are to be enabled to “live in the community with choices equal to others”, this requires investment in ordinary houses (not beds in group homes which do not offer ‘choices equal to others’ and which private capital has started to identify as profit-making opportunities).  It requires recruitment and training of workers, support to families, and changes in the communities in which people are to live.  All of this means additional money needs to be spent upfront before the considerable expenditure on institutional care can be withdrawn.  

However, as Mike said, “the politics of social policy is circumscribed by economic considerations”.  This means that, not only does government refuse to provide sufficient resources to enable transfer from long-stay hospitals to community living, but also private capital continues to identify opportunities for creating a surplus out of institutional provision.  And the dominant political ideology ensures that such surplus remains in the possession of private capital rather than being redistributed for the common good.  As Margaret Flynn, who wrote the original report on Winterbourne View, pointed out, that institution was run by a company called CB Care Ltd which was owned by a Swiss-based equity group whose Directors did not pay UK tax.   

The current phase of social care policy places an emphasis on community and family support - posed in seemingly progressive language like ‘strength-based assessments’ and ‘community cohesion’.  This kind of language obscures the lesson Mike Oliver taught us - that political decisions about how the surplus generated by our economy should be distributed mean that individuals and families are not supported in ways which build and support their strengths or ensure community cohesion.  Until we understand that and campaign for the kind of economic and social transformation that Mike envisaged, our society will continue to deny the human rights of far too many disabled people but particularly of those who have the misfortune to be produced as the disability category of ‘people with behaviour that challenges’. 

Friday, 8 March 2019

Broken Promises: Looking back on ‘Improving the Life Chances of Disabled People’.

Text of the Lorraine Gradwell Memorial Lecture, given on Friday 8th March 2019.

In 2004, a group of civil servants working in the Prime Minister’s Strategy Unit came to Manchester to visit Breakthrough UK.  Lorraine had organised the visit for them to see how Breakthrough delivered employment support for disabled people.  They heard how Breakthrough advisors - most of whom were disabled people themselves - helped to address a range of barriers, how they challenged employers’ attitudes and assumptions, and how they acted as advocates for the disabled people they were working with.  

I was with that group of civil servants. As a freelance consultant I was working with them on what became a 25 year strategy, published in 2005 called ‘Improving the Life Chances of Disabled People’.  I had been brought in to lead a section on independent living, which became the main thrust of the whole strategy - mainly because I was able to introduce the civil servants to the ideas, the organisations and the individuals who had been fighting for so many years for our rights to choice and control in our lives.  

Tony [Tony Baldwinson, Lorraine’s husband] told me that Lorraine saw the Life Chances report as a ‘policy high point’.  It was certainly well received generally by the disability movement.  It was a moment of hope, a moment when we thought that government had finally understood the nature of our lived experiences, the barriers we face, and the kind of solutions that would make a real difference.  Although, perhaps inevitably, the policy proposals didn’t go far enough the general feeling was that, to coin a phrase, ‘things could only get better’.  

Indeed, Life Chances was followed by the setting up of the Office for Disability Issues - a cross government unit with the aim of promoting disability equality across all government departments - and the Independent Living Strategy (which I also worked on and which again Lorraine influenced). 

There were two commitments set out in Life Chances which the disability movement particularly welcomed.  The first was one which said that, by 2010, every local authority area should have a user-led organisation modelled on existing Centres for Independent Living. 

The second was a cross-government approach to providing disabled people with the resources - money, services, adaptations and equipment - which enable choice and control and social inclusion.  This was to be initially delivered by piloting individual budgets, which were to include not just social care funding, but also continuing health care, employment support and disabled facilities grants. 

Both these commitments were taken forward in the context of the Office for Disability Issues being set up to work across government departments to deliver the Life Chances strategy. 

But the financial crisis of 2007/8 came less than three years after the publication of Life Chances, and we were only two years into the five year Independent Living Strategy when the Coalition government took over in 2010.  And things changed.

Like me, Lorraine was struck by how quickly the public and political discourse separated disabled people into who was to be categorised as ‘vulnerable’ and who was a ‘scrounger’; how quickly government’s emphasis seemed to be entirely on reducing the numbers of people on out-of-work disability benefits; how the gains we thought we had made, and the opportunities we thought there were for further progress, seemed to disappear almost overnight.  

But actually - looking back on the hope associated with Life Chances - it is possible to see that there were other policy developments happening at the same time - before the financial crisis - which sowed the seeds of what was to come under the Coalition and then Conservative governments in the years since 2010. 

It is also possible to see, with hindsight, that we should have been much more ambitious in our proposals concerning independent living. 

To take the first point - other policy developments at the time - the Life Chances strategy included a chapter on employment but it was what was happening on this issue in other parts of government which had a more profound impact on disabled people. 

The disability movement during the 1980s and 1990s framed employment opportunities as a civil rights issue, arguing for the right to work and for an end to employer discrimination and other barriers to employment.  Recognition of discrimination in the context of employment was a key part of the campaigns for disability anti-discrimination legislation.

The employment chapter in the Life Chances strategy was written by a civil servant on secondment from Treasury.  Although the chapter did refer to discrimination and barriers, it also framed the problem as there being “little incentive or assistance for people to move off benefits and into work”. It 
made assertions such as work being “a component of good health” , “work as a positive driver for good health” and emphasising the “beneficial health effects of work” - almost as if employment was a treatment for ill health.  Lorraine herself, in commenting on Life Chances, raised a concern that the proposals seemed to conflate impairment and ill health, leading to a possibility that people who were ill would yet still be expected to work.

In the same year that Life Chances was published, the government also published a document called ‘The Scientific and Conceptual Basis of Incapacity Benefits’.  This report had been commissioned by the Department for Work and Pensions and was to form the basis for what became the Work Capability Assessment.  The document argued that in order to reduce the numbers of people on out of work disability benefits the social security system needed to bring about a “fundamental transformation in the way sick and disabled people see themselves”.

This “fundamental transformation” involved separating disabled people out into two main categories: those “with severe medical conditions and permanent impairment” and those with what they call “common medical conditions”, who they thought make up two thirds of those claiming out of work disability benefits.  They argued that it was only the former group who the welfare benefits system was supposed to provide for.  Those with ‘common health conditions’ they identified as having  “mild/moderate mental health, musculoskeletal and cardiorespiratory conditions” and experiences of these conditions were said to be “subjective”.   It was therefore people’s “attitudes and motivation” which were the main barrier to employment. 

Instead of seeing the lower rate of employment amongst disabled people as a civil rights issue, governments of all persuasions have presented the numbers of people eligible for out of work disability benefits as the problem. The focus is therefore on ‘getting people off benefits’, instead of delivering equal opportunities for employment; the focus is on scrutinising whether people are ‘fit for work’, not on what changes to working conditions might make employment possible; the focus is on people’s supposed attitudes and motivations instead of on whether suitable work is available in the local labour market.  

Worse than any of that, is the denial of people’s own experiences of illness and/or impairment - unless you can be categorised, by a measurement devised by the DWP, as having a severe and permanent condition then your experience is considered to be contentious.  Thus the Work Capability Assessment gives assessors the power to determine a person’s level of impairment or their experience of ill health - treating as irrelevant not only medical diagnosis but also how people themselves experience their impairment or illness and its impact on them.

(For a full account and analysis of this issue see ‘In/validating disability: changes in the labour market and out of work disability benefits’ by Rosa Morris - full disclosure, my daughter)

No wonder that, particularly since 2010, disabled people’s organisations have been forced to focus on illness and impairment in defending people’s right to an income if they are not able to work. Work is framed not only as an obligation but increasingly as a response to ill health - to such an extent that the 2017 White Paper on work and disability was jointly published by the Department of Health and the Department for Work and Pensions, and urged healthcare professionals to see “work as a health outcome”. 

Disabled people welcomed the way the government had formally adopted the social model of disability in Life Chances.  But what we hadn’t realised was how the model would be misused.  At the time of Life Chances, the disability movement had spent almost 30 years emphasising how it was social, economic and attitudinal barriers not impairment or illness that held us back.  But this meant we were caught on the back foot when, at the heart of the reforms to welfare benefits, was a denial of people’s experiences of impairment and illness.  

It’s not surprising therefore that it has often been people with chronic illness who have made the most vocal challenges to the Work Capability Assessment, and also to the replacement of Disability Living Allowance with Personal Independence Payment. In 2012, the Spartacus report about welfare reform, written by a group of social media activists - many of whom couldn’t leave their homes because of chronic illness - hit the headlines and helped to bring about a series of defeats for the government in its legislation to reform Disability Living Allowance.  Since then a movement has grown of people with chronic illness who seek to apply the social model to their experiences. They have developed and enriched our understanding of the social model, a lot of this now happening through the Chronic Illness Inclusion Project, whose website I highly recommend.  

Life Chances would have been a better strategy if these groups and their experiences had been involved in the disability movement in previous decades, and particularly if they had been consulted in developing the Life Chances proposals on employment. 

It wasn’t just that those of us working on Life Chances didn’t pay enough attention to what was going on elsewhere in the policy jungle.  We also made a fatal error in our proposals on independent living.

Yes, it was great that the Life Chances strategy adopted the disability movement’s definition of independent living - the recognition that independence comes not from doing things for yourself, or living on your own, but about having assistance and support how and when we choose.   And the commitment in Life Chances to pilot individual budgets laid the foundation for what became personal budgets for social care - the intention being that self-determination would be achieved by giving people control over the resources needed for their support.

But personal budgets have not generally delivered self-determination.  Instead, in the context of significant cuts in funding for social care, the level of resources has too often been reduced to only providing the most basic personal care.  Most importantly, there remains an unequal relationship between disabled people and social services professionals because it is local authorities who have the ability to determine - through the assessment and resource allocation process - what kind of life we can lead. 

When we were developing our proposals for independent living in Life Chances, we didn’t pay enough attention to the growing resistance within the Department for Work and Pensions to the Independent Living Fund.  The ILF was perhaps the most successful independent living policy there has been in this country but it happened entirely by accident and DWP as a department was never reconciled as to why its budget should be their responsibility rather than that of social care. 

We should have recognised that the ILF had more potential to deliver a right to independent living than any reform to local authority social care.  The origins of the ILF were important - it was set up in 1988 to replace the Domestic Needs Allowance, a social security payment which covered the additional costs of those people who needed help with what was called ‘ordinary domestic tasks’ like cooking and cleaning.  It was thus part of a system based on entitlement – if you met certain criteria you had the right to a certain amount of money. Although this principle of entitlement was undermined by the gatekeeping role that local authorities played in accessing ILF money after 1993, there was plenty of evidence of the empowering role that the ILF played before it was abolished by the Coalition government.

When we looked at the problems with social care at the time - in particular at the varying practices and policies across local authorities, the difficulties disabled people had moving from one area to another - the obvious question arose as to whether independent living should be funded on a national basis and taken away from local authorities.  We floated this idea but the response was that this would undermine the local accountability which was achieved by leaving it with local authorities. 

Instead of accepting this argument, we (but especially me in the role that I had) should have challenged it and put the case for an independent living system, nationally funded and based on the principle of entitlement. 

We should have done this because the social care system does not, unlike the NHS, deliver support on the basis of need but instead delivers it on the basis of the resources available.   And while local authorities have the legal responsibility for social care, it is central government that determines what level of resources are available.

Life Chances did not tackle this fundamental problem. Neither did it address the impact of the privatisation of social care services which had been steadily taking place since the 1990 NHS and Community Care Act.  By now it is clear that the ‘market’ in social care services, created by that legislation, has failed in that both home care and residential care providers find it increasingly difficult to make a profit because of the squeeze on the amount that local authorities will pay. The associated low level of pay for care workers means that care providers have difficulty recruiting and rely on migrant workers - yet this will become much more difficult after Brexit and the proposed immigration policy which would require people coming into the country to be earning in excess of £30,000. 

The self-determination that personal budgets were intended to deliver has, mostly, failed the materialise. Life Chances had pointed out that delivering independent living “would require a cultural shift so that social care professionals are working to promote self-directed support”. Some people working in social care try hard to support people’s self-determination, but they can only struggle against an inherently disempowering relationship.  Three quarters of people over the age of 65 are on local authority managed budgets, with little or no choice of who provides their care. Even amongst people with physical impairments under the age of 65, only half receive their budget as a direct payment - and there is increasing evidence that local authorities are placing more and more restrictions on what direct payments can be used for, for example by insisting - contrary to the Care Act guidance - that people have to use a prepayment card rather than have money paid into a bank account.

Article 19 of the UN Convention on the Rights of Persons with Disabilities sets out “the equal right of all persons with disabilities to live in the community, with choices equal to others”.

The current social care system is incapable of delivering this right.  

The Reclaiming Our Futures Alliance - an alliance of a range of disabled people’s organisations in England - recently published their proposals for making independent living a reality.  They include a national independent living service, funded from general taxation, free at the point of delivery, and delivered locally in co-production with disabled people.  This is what is necessary to deliver our Article 19 right to independent living.

One final point, one of the things that Life Chances did get right was the proposal for a national network of disabled people led organisations, modelled on the existing Centres for Independent Living.  The Department of Health, together with the Office for Disability Issues, set up a programme for delivering this commitment but it was never fully realised and since 2010 many local disability organisations have had their funding cut and have found it increasingly difficult to hold onto existing contracts to provide direct payments support services. Such local organisations are a vital part of any nationally funded independent living service.  

It’s at the local level and amongst disabled people ourselves that we will develop innovative ways to enable people to live ordinary lives. It’s amongst disabled people and their allies that we’ll find different ways of delivering support.  

This relates to an issue which is of concern to the majority of the population and not just to disabled people: how to design and deliver services that are responsive to the wishes of individuals, that are accountable to their users (rather than to shareholders or to a professional group whose culture is one of ‘we know what’s best for you’).

What we need from government is investment in the infrastructure which enables us to develop our own responses to making Article 19 of the CRPD a reality - to enable “the equal right ….to live in the community, with choices equal to others”.  And I know that that’s what Lorraine would also have considered a priority.  While she had a key influence at a national level, it was in her own city that she helped build organisations which make a difference to disabled people’s lives and that’s what we must continue to do.

Tuesday, 12 February 2019

Communication - a fundamental human right

[Cartoon reproduced with kind permission of Angela Martin]

This was first published as part of the first Rightful Lives online exhibition in 2018.

Communication: Everyone’s human right

Communication is a fundamental human right, embodied within Article 19 of the 1948 UN Convention on Human Rights (and incorporated into UK legislation via Article 10 of the European Convention on Human Rights and the Human Rights Act 1998). Article 21 of the 2006 UN Convention on the Rights of Persons with Disabilities confirms “the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice”.   This right is therefore not just for people who communicate using the dominant forms of communication but for everyone, regardless of their particular level of understanding or type of communication.  Most importantly, as Sharynne McLeod, Professor of Speech and Language, has written,  “Everyone should uphold others’ right to communicate as they interact with people in daily life in order to enhance equality, justice and human dignity.”

When this right is not protected and promoted it can lead to a denial of other human rights, including the right to freedom from “inhuman and degrading treatment or punishment” (Article 3 of the European Convention).  This is an absolute right and the European Court has ruled that it is held “irrespective of a victim's conduct”.

Ultimately the denial of the right to communicate can lead to denial of the right to life. This has become increasingly evident from reports and reviews about ‘preventable’ deaths of people with learning disabilities and/or autism.

Pain is our bodies’ way of telling us that something is wrong - it’s a warning system that prompts us to seek diagnosis, advice and treatment.  But what if you have a level of cognitive impairment which means that your articulation of your pain occurs not through telling someone about it in words but through a different means of communicating, including how you behave.  What if your communication is not recognised, is dismissed as ‘challenging behaviour’, is belittled by a belief someone other than you ‘knows better’. 

A denial of this fundamental human right to have your communication recognised is at the heart of understanding why, in Sara Ryan’s words, a label of learning disability” is synonymous with “a diagnosis of a life limiting illness” - on average, learning disabled men die 23 years younger than their non-disabled peers while women die 29 years younger.  This is the finding from the first annual report of the Learning Disabilities Mortality Review (LeDeR) Programme.  

That report found that:

Several reviewers commented on the importance of health care staff being aware of behaviour as a means of communication, for example:
‘Acute services need to be supported in recognising the needs of patients with learning disabilities in their care, particularly people with communication difficulties who may present with certain behaviours as a mechanism to communicate.’

In one instance of a preventable death, the reviewer “reported that although the person with learning disabilities relied on those who knew his individual and communication patterns well in order identify his needs, they had no way of sharing this key knowledge with others supporting and caring for him”. Another reviewer drew attention to the need to ensure that  “front line practitioners are aware that changes in behaviour and mood can be a sign of an underlying medical condition.’”

It’s not as if the advice and resources are not available to the medical and nursing profession.  The General Medical Council provides advice and resources for doctors about communicating with people with learning disabilities, while an article in the Nursing Times nearly 20 years ago warned against the tendency to interpret pain and distress as ‘challenging behaviour’: 

Imagine feeling severe pain and not understanding what is happening, nor even being able to ask for help and information. That is frequently the case for people with profound learning disabilities who cannot communicate verbally. Yet when distress and anxiety alter their demeanour, it is often dismissed as 'challenging behaviour' until the illness causing the pain reveals itself in some other way.

Yet despite such evidence of knowledge and understanding it is still possible for a mother of a learning disabled teenager to find that not one member of staff with whom her daughter came into contact during admission for treatment attempted to find out how she communicated, or how she was feeling. As Rachel Adam-Smith wrote

The hospital appears to lack the interest to ensure all patients have the ability to communicate their needs or to introduce themselves to those with communication issues. Lack of training and ignorance perhaps about the needs of the person they are caring for. Disabled children do have feelings, can feel pain and have the ability to think. Unfortunately, no one ever asked me about her communication needs.

It’s also not as if we didn’t already know that people with learning disabilities are dying needlessly - or that difficulties with communication may not an important factor in the failure to provide timely and adequate treatment.  The Confidential Inquiry into the premature deaths of people with learning disabilities, published in 2013, found that “30% had limited verbal communication, and 22% did not communicate verbally at all”

In June 2018 the NHS England published Learning Disability Improvement Standards for NHS Trusts, asserting “We all have human rights; and people with learning disabilities, autism or both have the same rights as everyone else.”  This is an encouraging statement but, disappointingly, amongst the rather bureaucratic jargon used in this document there is no mention of the importance of staff developing skills which enable them to understand what people are communicating.  There is the usual nod to “accessible information” and a reference to “modified communication” but nothing that would convey an understanding of what is expected of staff if they are to be able to understand when someone is communicating pain. 

Many years ago, when I was involved with training social workers on incorporating a social model of disability into community care assessments, we tried to get them to reframe what is usually perceived as some people’s ‘inability’ to communicate. We took sentences commonly used in assessments and asked them to reword them to cite the ‘problem’ as being theirs rather than the person’s they were assessing.  These are the kinds of things they came up with:

He can’t speak.
I’m not used to talking with someone who uses a communication board. I need to get some practice.

She wouldn’t be able to tell us what she wants
I don’t know how to enable her to communicate with me. I need to find out.

He has a speech impairment.
I’m not used to talking with someone with a speech impairment. I need to spend more time with him. I need to not be afraid of saying I don’t understand.

He doesn’t understand what I ask him.
I’m using unnecessarily complicated words and sentences. I need to simplify my language.
I’m using the wrong method to find out his views. I need to find other ways of finding out what things feel like for him.

It’s a seemingly small thing but changing the nature of the problem is the first step to acknowledging and respecting the most basic human right to communicate.  Instead of the problem being located within the person with learning disabilities and/or autism we need to see it as the responsibility of all of us to recognise different methods of communication, and to seek advice and help from those with relevant expertise, most importantly from those who know the person best.

It is only by doing this that everyone’s fundamental human right to communicate, their right to freedom from ‘inhuman and degrading treatment’ and their right to life, can be protected and promoted.