Rachel Hughes is carrying out a study looking at the significance of friendship in the lives of adults with profound and multiple learning disabilities…
How often do we stop to reflect on what our relationship with another person means in our lives? Weddings and funerals are two of the few occasions when we do this formally. They are also times when we learn about other people’s relationships.
The last funeral I attended was that of my friend Mary, who died in 2008. During the service, I found myself looking at a small group of people sitting at the front of the church and thinking about their relationships with Mary.
They were people I had met on a number of social occasions, and they were known to many other people at the funeral too. But it struck me that a stranger might have been puzzled by their presence. All of them were wheelchair users and they were not singing the words of the hymns or reciting the responses. From time to time they made unusual noises and movements. They were people who I knew to have profound and multiple learning disabilities.
They were not able to walk and they did not use words, some of them were not able to see or hear, and their awareness of the world was influenced by their profound intellectual impairment. However, this is not how Mary talked about them when she was alive. They were not a collection of deficits to her. They were her friends.
In my experience, Mary was unusual in forging friendships with people who have profound and multiple learning disabilities (PMLD). One analysis (carried out by Eric Emerson and Chris Hatton) found that only 38% of adults with PMLD saw a friend at least once a year. The same figure for all adults with learning disabilities was 66% (and for the UK population in general it was92%).
Either those who responded to the survey – presumably the care workers or parents of adults with PMLD – were not identifying their client or relative’s friends, or the adults with PMLD concerned were living largely friendless lives. So should we be worried that adults with PMLD may be living friendless lives?
Although the Growing Friendships campaign has not yet featured people with PMLD specifically, it has already highlighted two good reasons why we should. The first is that friendship is generally considered to be one of life’s ‘good things’. If we value friendship then surely it must be right that we strive to enable people with PMLD to share in it. A second reason is that England’s national learning disability strategy makes it clear that friendship matters.
Valuing People Now says that services should be supporting people with learning disabilities to develop friendships, among other relationships. Significantly for people with PMLD, it has also explicitly stated that the Valuing People Now objectives apply equally to all people with learning disabilities. Another reason has been suggested by some disability theologians (for example, Jean Vanier and Hans Reinders).
They have highlighted how people with learning disabilities have suffered, and still suffer, as a result of being considered ‘lesser’ humans. People with profound and multiple learning disabilities are particularly at risk of this kind of marginalisation because they do not seem to be able to do many of the things that other people can do. For example, some do not seem to be able to act intentionally and most do not use speech or sign language.
Friendship, according to these theologians, can put the humanness of people with PMLD on a firm footing. They argue that the essence of humanness is not about having intentionality or using language, but about being vulnerable and dependent on our fellow human beings. People with PMLD are very vulnerable and they are highly dependent on others in most areas of life. Through becoming friends with people with PMLD, the theologians suggest, others can learn to value vulnerability and dependency. In this way they come to recognise the humanness of people with PMLD while becoming more truly human themselves.
Given the potential value of friendship, it could be argued that we should urgently consider why people with PMLD might be living friendless lives, in order to be able to do something about it. One approach to this task would be to return to first principles and consider what we mean by friendship. Understanding of friendship has changed over time and varies across different cultures. The ‘friendship’ which underpins the thinking of disability theologians is a kind of unconditional gift to another person.
Sociologists researching what people in the UK today think about friendship have found that individuals often refer to choice and reciprocity (see, for example, Ray Pahl and Liz Spencer’s work). People say that choosing our friends, and being chosen by them, is what makes friendship different to family or work relationships (choice). People say they expect a balance of give and take within their friendships and that unequal friendships don’t last (reciprocity). But choice and reciprocity may not be easy for people with PMLD.
As mentioned earlier, some people with PMLD do not seem to be able to act intentionally. When we speak of choice for this group of people, what we mean is that we are observing their reactions and deciding what we think they like and dislike. But can we – should we – decide that they consider another person to be their friend? Some people with PMLD may have more advanced communication.
They may be able to form intentions and to make choices. However, they may still have difficulty communicating those intentions and choices. They cannot say ‘this is my friend ‘if they do not use words and they cannot sign ‘friend’ if they donot use sign language. How do we know what their understanding of ‘friend’ or ‘friendship’ is? How do we know that they want ‘a friend’? There seems to be a potential barrier to reciprocity here. If the people with PMLD who attended Mary’s funeral could not think of, or want, her as ‘a friend’, were they in fact her ‘friends’? I decided to carry out a study to find some answers to these questions.
Questions about the ‘reality’ of friendships involving people with PMLD are very difficult. But I do not recall them troubling Mary and her friends. Perhaps their own ideas of friendship were less problematic than the choice and reciprocity notion of friendship. Or perhaps being friends was something they just did, almost without thinking. This suggests an alternative approach to the task of understanding why people with PMLD seem to live friendless lives.
Rather than returning to first principles, we could try to learn about the experiences of people like Mary and her friends -people who feel they are ‘doing friendship’ already. This is one of the objectives of The Friendship Matters Study, a research project investigating the significance of friendship in the lives of adults with PMLD. The project aims to describe and analyse firstly how friendship is talked about, written about and acted out in the everyday lives of adults with PMLD.
Then, secondly, it sets out to look at how this compares with other kinds of relationships(for example family relationships and relationships with care workers). Using a case study approach, I am spending time with a number of adults with PMLD, with people identified as their friends, and with their families and care workers (about a month per ‘case’).
I am following up friendship wherever my participants suggest it is to be found – not only between people with and without disabilities, as in Mary and her friends’ case, but also among people with profound and multiple learning disabilities, and within relationships between care workers and their clients. I am not myself trying to judge whether the ‘friendships’ I hear about are ‘real’ or ‘true’.
I am simply recording what a range of people have to say about them, and how those involved in them act towards each other. I will be accompanying the participants with PMLD going about their ordinary activities, interviewing their friends, family members and care workers, and looking at some oftheir personal records, such as their person-centred plans. I will also be interviewing the managers of the organisations which provide the person with services. The project is running from January until the end of 2010.
Please do get in touch if you think you would like to participate in the project, or suggests someone else who might participate, or to talk about the issues raised in this article.
About the author
Rachel Hughes is a PhD student with the Cambridge Intellectual and Developmental Disabilities Research Group
Acknowledgments
Rachel Hughes is supervised by Dr Marcus Redley and Dr Howard Ring and funded by the SHI Foundation, the Health Foundation and the NIHR CLAHRC for Cambridgeshire and Peterborough.
KEY FACTS AND FIGURES
There are just over 16,000 adults with PMLD in England. “Sustained and accelerating growth” in the numbers of adults with PMLD in England is predicted for 2008-2026. About two-thirds of adults with PMLD live with relatives (and about one-third live with relatives aged over 55). Only 38% of adults with PMLD have more than yearly contact with friends.
