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 reflecton 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'srelationships.
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 theirrelationships with Mary. They were people I had met on a number ofsocial occasions, and they were known to many other people at thefuneral too. But it struck me that a stranger might have beenpuzzled by their presence. All of them were wheelchair users andthey were not singing the words of the hymns or reciting theresponses. From time to time they made unusual noises andmovements. They were people who I knew to have profound andmultiple learning disabilities. They were not able to walk and theydid not use words, some of them were not able to see or hear, andtheir awareness of the world was influenced by their profoundintellectual impairment. However, this is not how Mary talked aboutthem when she was alive. They were not a collection of deficits toher. They were her friends.
In my experience, Mary was unusual in forgingfriendships with people who have profound and multiple learningdisabilities (PMLD). One analysis (carried out by Eric Emerson andChris Hatton) found that only 38% of adults with PMLD saw a friendat least once a year. The same figure for all adults with learningdisabilities was 66% (and for the UK population in general it was92%). Either those who responded to the survey - presumably thecare workers or parents of adults with PMLD - were not identifyingtheir client or relative's friends, or the adults with PMLDconcerned were living largely friendless lives. So should we beworried that adults with PMLD may be living friendless lives?Although the Growing Friendships campaign has not yet featuredpeople with PMLD specifically, it has already highlighted two goodreasons why we should. The first is that friendship is generallyconsidered to be one of life's 'good things'. If we valuefriendship then surely it must be right that we strive to enablepeople with PMLD to share in it. A second reason is thatEngland's national learning disability strategy makes it clear thatfriendship matters. Valuing People Now says that services should besupporting people with learning disabilities to developfriendships, among other relationships. Significantly for peoplewith PMLD, it has also explicitly stated that the Valuing PeopleNow objectives apply equally to all people with learningdisabilities. Another reason hasbeen suggested by some disability theologians (for example, JeanVanier and Hans Reinders). They have highlighted how people withlearning disabilities have suffered, and still suffer, as a resultof being considered 'lesser' humans. People with profound andmultiple learning disabilities are particularly at risk of thiskind of marginalisation because they do not seem to be able to domany of the things that other people can do. For example, some donot seem to be able to act intentionally and most do not use speechor sign language. Friendship, according to these theologians, canput the humanness of people with PMLD on a firm footing. They arguethat the essence of humanness is not about having intentionality orusing language, but about being vulnerable and dependent on ourfellow human beings. People with PMLD are very vulnerable and theyare highly dependent on others in most areas of life. Throughbecoming friends with people with PMLD, the theologians suggest,others can learn to value vulnerability and dependency. In this waythey come to recognise the humanness of people with PMLD whilebecoming more truly human themselves.
What is friendship?
Given the potential value of friendship, itcould be argued that we should urgently consider why people withPMLD might be living friendless lives, in order to be able to dosomething about it. One approach to this task would be to return tofirst principles and consider what we mean by friendship.Understanding of friendship has changed over time and varies acrossdifferent cultures. The 'friendship' which underpins the thinkingof disability theologians is a kind of unconditional gift toanother person. Sociologists researching what people in the UKtoday think about friendship have found that individuals oftenrefer to choice and reciprocity (see, for example, Ray Pahl and LizSpencer's work). People say that choosing our friends, and beingchosen by them, is what makes friendship different to family orwork relationships (choice). People say they expect a balance ofgive and take within their friendships and that unequal friendshipsdon't last (reciprocity). But choice and reciprocity may not beeasy for people with PMLD. As mentioned earlier, some people withPMLD do not seem to be able to act intentionally. When we speak ofchoice for this group of people, what we mean is that we areobserving their reactions and deciding what we think they like anddislike. But can we - should we - decide that they consider anotherperson to be their friend? Some people with PMLD may have moreadvanced communication. They may be able to form intentions and tomake choices. However, they may still have difficulty communicatingthose 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 'afriend'? There seems to be a potential barrier to reciprocity here.If the people with PMLD who attended Mary's funeral could not thinkof, or want, her as 'a friend', were they in fact her 'friends'? Idecided to carry out a study to find some answers to these questions.
The Friendship Matters Study
Questions about the 'reality' of friendships involving people with PMLD arevery difficult. But I do not recall them troubling Mary and herfriends. Perhaps their own ideas of friendship were lessproblematic than the choice and reciprocity notion of friendship.Or perhaps being friends was something they just did, almostwithout thinking. This suggests an alternative approach to the taskof understanding why people with PMLD seem to live friendlesslives. Rather than returning to first principles, we could try tolearn about the experiences of people like Mary and her friends -people who feel they are 'doing friendship' already. This isone of the objectives of The Friendship Matters Study, a researchproject investigating the significance of friendship in the livesof adults with PMLD. The project aims to describe and analysefirstly how friendship is talked about, written about and acted outin the everyday lives of adults with PMLD. Then, secondly, it setsout to look at how this compares with other kinds of relationships(for example family relationships and relationships with careworkers). Using a case study approach, I am spending timewith a number of adults with PMLD, with people identified as theirfriends, and with their families and care workers (about a monthper 'case'). I am following up friendship wherever my participantssuggest it is to be found - not only between people with andwithout disabilities, as in Mary and her friends' case, but alsoamong people with profound and multiple learning disabilities, andwithin relationships between care workers and their clients. I am not myself trying to judge whether the 'friendships' I hearabout are 'real' or 'true'. I am simply recording what a range ofpeople have to say about them, and how those involved in them acttowards each other. I will be accompanying the participantswith PMLD going about their ordinary activities, interviewing theirfriends, family members and care workers, and looking at some oftheir personal records, such as their person-centred plans. I willalso be interviewing the managers of the organisations whichprovide 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 suggestsomeone 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 Intellectualand Developmental Disabilities Research Group
Rachel Hughes is supervised by Dr Marcus Redley and Dr Howard Ringand funded by the SHI Foundation, the Health Foundation and theNIHR CLAHRC for Cambridgeshire and Peterborough.
KEY FACTS AND FIGURES
There are just over 16,000 adults with PMLD inEngland. "Sustained and accelerating growth" in the numbers ofadults with PMLD in England is predicted for 2008-2026. Abouttwo-thirds of adults with PMLD live with relatives (and aboutone-third live with relatives aged over 55). Only 38% of adultswith PMLD have more than yearly contact with friends.
Emerson E (2009) Estimating future numbers of adults with profound multiple learning disabilities in England. Lancaster:Centre for Disability Research, and from
Emerson E & Hatton C(2008) People with Learning Disabilities in England. Lancaster:Centre for Disability Research.