Sustaining Hope: Friendships and Intellectual Impairment

Introduction

In January of 2017 three families came together for a barbeque. There were five adults and fourteen children under the age of twelve, along with a pet dog. Sixteen of the nineteen people present that day have typically developing intellects. The remaining three people were children who had been diagnosed as living with intellectual impairment in the mild through to severe range and with secondary impairments as well.¹ The parents were very well known to one another, and describe their relationship as particularly close.

It was a noticeably hot afternoon in what had already been a hot summer. The parents were congregating in the shade down one side of the house where the sausages and steaks were being cooked. Most of the children were at the back of the house enjoying some water-play. A large muddy puddle soon developed, and the dog began running through it. Within a few moments she was jumping over everybody with her muddy paws and it wasn’t long before the dog needed to be removed to the other side of the house behind a barricade where she and her muddy paws could be more easily contained.

Max, a beautiful boy who would be described by our culture as living with severe intellectual impairment, had been particularly enjoying the commotion. While the other children played around him, Max had been sitting mostly naked in the muddy puddle, enjoying the sensory experience of the water splashing over him as he smeared his body and face with the cool, thick, dark mud. After the dog was removed from the party, Max evidently decided it was his turn to chase the other children. As he was not quite as mobile as the others, he was finding it difficult to catch anyone. He was determined though and, with a wonderfully huge smile plastered over his face, Max pressed on in his game. After a little while the laughter began to fade, and it was apparent that the other children were tiring of Max’s persistent attempts to get his muddy hands on their clean clothes. Noticing their emerging frustration, Max’s mother quietly removed him to the opposite side of the house where, only a short while ago, the pet dog had been placed. A short time later the other mother present that day joined her, and together they sat with Max in a sandpit. There were tears rolling down the face of Max’s mother as she quietly confided in her friend that while the family love Max more than life itself, and he is the source of so much joy to them, there was a deep sadness within her because it seemed that the best option for all involved was to remove Max to the same side of the house as the dog. Through what had now become a torrent of tears, neither of the two women initially noticed that the much loved eight-year old Max had for a few moments been rolling around the sandpit with a soiled nappy. Quickly the two women lovingly helped Max out of the sandpit, entered the house through a side laundry door, gently washed and cleaned him in the bathroom, dressed him again in a new set of his best party clothes, and then re-entered the festivities. All the while the party had played on oblivious to what had unfolded on the other side of the house.

Contrast that experience with that of another family who have a ten-year old boy called Sam, who lives with mild intellectual impairment and autism. Sam loves making friends and telling them the same jokes over and over as well as talking about movies and TV shows, but often he only has the family to talk with. Recently, John came from overseas to visit some of his friends here in Australia, including Sam’s parents. When he first met Sam, it was at a beach where many families had gathered to celebrate John’s arrival. Sam’s parents needed some help to manage all their children safely. Since Sam generally has no interest in being in the water, they really needed help with monitoring him up on the sand otherwise they would not be able to join the other families who were splashing in the surf. Maybe in the first instance John was simply doing the parents a favor by helping them out, but John and Sam bonded very quickly and by their second visit to the beach a few days later, John was seeking out Sam and they were spending all of their time together. After that, as soon as the two of them saw each other, both their faces would light up and off they would go to spend time together as friends. It was not a charitable act or a favor to the parents, the two of them wanted to be with each other. John described the relationship as a real joy for me and Sam regularly asks, when can we go and see John in Scotland? Since returning to his homeland, John has maintained the friendship with Sam and the family through postcards, texts, emails, and phone calls. John’s ongoing relationship with them affirms that both Sam and his family are equally valued by John.²

What is the critical difference between the two situations? Some may argue that it is the severity of Max’s intellectual impairment that limits his ability to relate well to others, whereas Sam, living with a mild form, is able to relate much more easily and can more readily form a friendship. It is easy to blame Max himself for his separation that afternoon and this evaluation only serves to further diminish Max’s value as a person. The outcome is to plunge Max and his family into an even deeper pit of isolation and loneliness than they are already experiencing. We believe the critical difference in the two situations is not the level of intellectual impairment that the two children live with, but the friendship offered by John. Both Max and Sam are deeply loved by their parents and siblings, but it was John’s actions that communicated something that is crucial to people living with impairment and their families. The incident on the beach was not an isolated event. John spent time with Sam over several weeks, often at the expense of being with other friends he knows. Through this friendship, John was demonstrating that Sam was as worthwhile and valuable as his other friends. John’s attitude and actions demonstrated to Sam’s parents that someone other than an immediate family member was willing to the spend time to develop a friendship with him, even when John had the opportunity to do other things.

Sadly, Max’s experience of life has been very different. Max is clearly loved by his parents and siblings, and on that afternoon, like children everywhere, he wanted to enjoy being in the company of the other children and to join in the games. After a time, the other children wanted to do something different and Max was left on his own. There was no other friend from outside of the family to step in and play with Max for the length of time that he had hoped. In order to let the other children play on their own for a while, and to ensure that Max was not left by himself, his mother quietly withdrew him to the other side of the house. For many years leading up to this event, Max’s family had found themselves in the position of regularly having to leave social gatherings (or deciding not to attend in the first place) because they sensed that people were increasingly uneasy with Max’s behaviour. And so the tears shed that afternoon were not just about this one moment of isolation, but because it was just one more incident on top of a long list of many similar incidents. One more occasion where the parents had sensed that others felt their much-loved son was out of place in a social situation. One more time spent observing their son on the outside of a friendship circle. One more time when Max’s parents had to question whether people believed that Max was as equally valuable and worthwhile as other children. People living with intellectual impairment need to know that they are valuable and worthwhile, they need the affirmation that friendship brings, and they are hoping that people will offer this even if it means that the relationship ends up costing them something. Parents and other siblings need this as much as the child living with the intellectual impairment. The cumulative impact of countless incidents of social isolation over the years was so destructive for both Max and his parents.

These two contrasting stories reveal the crucial importance of offering friendship to both the person with intellectual impairment and their family. While we all have certain basic physical needs, genuine flourishing for the people who are the subject of this book, requires healthy relationships and genuine friendships to be offered to both the person living with intellectual impairment and their parents/carers by people outside of their immediate family. These dual friendships are rare, and social isolation is often the result. For all the genuine help that various government, charity, and church programs provide, if the person living with intellectual impairment and their families have no real friendships, then it is always of limited value. The fair treatment of others is critically dependent on whether you see them as a person or not, and the language that we use to describe another person (or groups of persons) sets the framework for our treatment of them. For example, in many Western societies, the use of words such as refugee, Muslim, Jew, black, unemployed, homosexual, or disabled, predetermines how large sections of the society will view and then interact with them. These are words that so often identify a group who are not us and therefore they can be treated differently to our people. In current Western society, moderate to severe intellectual impairment (whether from birth, due to disease or accident) is identified as a major deficit and questions are then raised as to whether the biological human being is truly a person. While there may well be challenges in forming friendships with people who have intellectual impairment, one of the key areas that raises a barrier is the descriptive language we use. This is true across a whole range of social settings, not just for those labelled as impaired, disabled or special needs. Our use of language is powerful in determining personhood. Much of it is totally subjective—a person is such because we describe them as such. This is so often based on ignorance or prejudice. So white Europeans did not always think that Africans or South Americans or Australian aborigines were human, and then found scientific and theological reasons to support their views. Similar judgements are often passed regarding those living with moderate to severe intellectual impairment.

At the center of much of the discussion is the notion of the quality of life. In English, quality can be used evaluatively or descriptively, but in our present debates it is the former that predominates, with the notion that any life can be measured against an agreed common standard.³ The measurement of quality can be positive (health and well-being), or negative (impairment). In practice, we tend to focus on pathology and impairments that are easy to detect and quantify, and then social judgements are made as to how to deal with such human beings.⁴ A negative evaluation is currently applied by some to those with moderate to severe intellectual impairment. It assumes that people in this situation have very limited life satisfaction and focuses our attention on the impairment rather than the social, political, and economic policies that frame the evaluation. It operates with the assumption that normal is a clearly defined and universally agreed standard, and that functioning within this normal range of abilities is in every way preferable and more desirable than unusual, or impaired forms of functioning. This often results in the healthy majority using the concept of normal to express their prejudices, assumptions and fears about the lives and experiences of those they label as the disabled. It raises the question as to how you score different values and then put them into some sort of hierarchical order, such as physical well-being over emotional well-being, or intellectual capacity over relational engagement? It can lead to decisions that some lives are not worth living, and should not be permitted to continue, because they are considered to have no net positive value or significance as determined by an influential sector of the society.⁵ Imagine how a person with Down syndrome (or any other genetically inherited condition), and their immediate family, must feel when government agencies around the world seek to eliminate the conditions by genetic testing and termination.⁶

All this is to say that any evaluation of quality or normal is never objective, it is always influenced by the assumptions, prejudices and life experiences of the person or group making the judgement.⁷ It gives privileged status to one particular perspective, in which the value of one individual life can be directly weighed and compared with others. A form of ethical calculus is performed in which the positive value of one life can outweigh the negative value of another.⁸ Some of this is comparatively trivial (for example, some are better than others at singing or understanding quantum physics), but in many cases harshly negative value judgements are made of certain forms of impairment by those who do not experience that particular limitation. No one seriously believes that those lacking the ability to sing well should be excluded from society, but that judgement is regularly made regarding those living with moderate to severe forms of intellectual impairment. If personhood is defined largely in cognitive terms, then the absence or loss of rationality will equate to the loss of self. This is a viewpoint that is commonly expressed in Western contexts. One of the challenges we want to raise in this book is to rethink the framework and the language we use for each other in the context of defining both the concepts of quality and normal. This is where the Christian doctrine of original sin makes a major contribution to the discussion, because it reminds us that every single human being (except for Jesus Christ) is born impaired in some way.⁹ None of us are presently as our Creator intended nor as we shall be post-resurrection.¹⁰

The way that we live together in community not only influences our own personal dignity, but the welfare of the whole group. The flourishing of a society is intimately related to the flourishing of the persons in the society and vice versa; you cannot have a healthy society if the people in it are disconnected from each other. Human beings tend to survive and thrive better in groups than in isolation, and it requires not merely a general connection with those around you at the moment, but a range of intimate and supportive relationships throughout life.¹¹ It has been pointed out that the critical element in so many poor health and well-being outcomes is not simply the lack of social connection, but the quality of the connections. Sadly, many do not want a social connection with a person who has a moderate to severe impairment. Other people have a social connection, but it lacks depth, while others enjoy a genuine friendship. Everyone wants and needs deep, genuine, all-of-life relationships, not just social snippets. This is equally true for people living with moderate to severe intellectual impairment and for their families. Unfortunately, much recent research does not engage the quality of the relationships they study.¹² All human beings have a pervasive drive to form and maintain at least a minimum quantity of lasting, positive, and significant interpersonal relationships. Satisfying this drive involves two criteria: the need for frequent, affectively pleasant interactions with a few other people, and these interactions must take place in the context of a temporally stable and enduring framework of affective concern for each other’s welfare—in other words, forming meaningful friendships.¹³ It is this lack of meaningful friendships for those living with moderate to severe intellectual impairment and, in many instances, for their families, that makes their lives so much more challenging. This is clearly illustrated by the conversation that took place following the incident with Max mentioned at the beginning of this chapter. Later that evening, during a quieter moment, Max’s dad heard of the day’s events on the other side of the house. With just the adults present he gently posed the questions that would ultimately provide the impetus for writing this book: Where is the hope for Max? Where is the hope for us as a family?

At one stage we had planned to examine a broad range of impairments, but finally decided to focus on those living with moderate to severe intellectual impairment and their families. This is an area that is particularly problematic in Western cultures that emphasize the importance of reason, logic, personal autonomy, and independence. It seems to us that our culture particularly devalues those who are living with moderate to severe intellectual impairment, and in many quarters promotes the termination of those diagnosed prenatally, and supports euthanasia for those who experience the loss of rationality in old age. The book begins by exploring the biblical and historical background to impairments and then examines the current situation faced by many families and persons living with moderate to severe intellectual impairment in Australia. We believe that much of the material is equally applicable to other Western nations. Chapter 2 reports on a series of interviews with people around the Sydney area who have a son or daughter living with intellectual impairment, most of whom would be labelled in the moderate to severe range. In some situations, a secondary diagnosis of autism, or physical impairment, or epilepsy was also present. The aim was simple: to ask these families to talk about their experiences and to hear from them what, if anything, they believed people in their local church community could do to support their family. These extensive interviews were recorded and then transcribed before being analyzed. The outcomes identified then lead to an examination in chapter 3 of some of the ways that personhood is defined biologically, philosophically, and theologically, as well as what that means for the establishment of meaningful relationships with others. The importance of every person being created in the image of God is then examined from the theological perspective of John Wesley, the eighteenth-century leader and key theologian of Methodism, who upheld the centrality of love and relationships in defining the essential nature of the image. In chapter 4 there is an examination of the damage that was done to the image in the beginning because of failing to live in accordance with God’s creation intentions. We then note how God responded in love to bring about healing and restoration through the life, death, and resurrection of Jesus Christ, and how this impacts our relationships with God and neighbor. The key findings in chapters 3 and 4 are: the centrality of relationships in God’s intention, God’s affirmation of the intrinsic dignity and worth of each individual, and the need to build strong, healthy friendships with all persons. Chapter 5 then offers a range of practical ways to form loving and supportive friendships with families who have loved ones living with an intellectual impairment. In many ways chapter 6 is the heart of this book—how to initiate and build strong friendships with those living with an intellectual impairment. The aim throughout is to promote and enable meaningful friendships with the person and their family, enfolding them within the life of the wider community. We do not want to reduce the person living with an intellectual impairment to a medical or educational problem, or even a ministry program for a local church. The final chapter examines the issue of hope that was raised by Max’s father at the beginning of this Introduction. In the light of the resurrection of Jesus Christ, chapter 7 identifies the hope that exists for our present life and the future hope that lies beyond our death. The closing section shows the importance of living now in the certainty of that hope, by affirming the value of every Max and building rich friendships with them and their families.

1

. We have chosen to use the term living with intellectual impairment throughout the book because we think it is a more respectful way of referring to people, whether the impairment was evident prior to their birth, at birth or through an acquired brain injury. Some of the sources we reference prefer to use the term disability or handicapped.

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. Interview

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3

. Wyatt, Quality of Life,

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4

. Hamel, Religious Beliefs and Healthcare Decisions,

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5

. Hamel, Religious Beliefs and Healthcare Decisions,

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. In Western