[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.