Intellectual Disabilities

A Systemic Approach

Sandra Baum, Henrik Lynggaard

• Publisher: Routledge
• Year: 2018
• ISBN:
  9780429915031
• Edition: 1
• Topic: Psicología
• Subtopic: Historia y teoría en psicología

The application of systemic ideas and principles in working with people with intellectual disabilities, their families and their service systems, has grown over the last decade in the UK. This book, for the first time, brings together the writings of a group of practitioners who have been using this approach in their clinical practice. It is hoped it will inspire others to try out different ways of working with people with intellectual disabilities and their wider systems, so that they can have the choice of a wide range of therapeutic approaches. It is also hoped that systemic practitioners who are unfamiliar with this client group might give consideration to extend their practice to also work with people with intellectual disabilities.

Chapter One

Working systemically with intellectual disability: why not?

Glenda Fredman

It is the start of the 1970s. I am an undergraduate student spending a few days at an institution accommodating people called “mentally retarded”. To occupy me, the institution staff have suggested I take David off for the day and teach him to tie his shoelaces. David’s slipper-type footwear does not have laces. He tells me these are his only shoes. Intent on performing the task set for me, I find us some string and prepare to teach David to tie a bow!

First I identify appropriate rewards for David. I learn from David that he likes to eat apples and cheese. Guided by the principles of behaviourism, I proceed to break down “bow-tying” into small steps or sub-skills. Then, rewarding David with small pieces of apple and cheese for successive approximations of the sub-skills of bow tying, through shaping and chaining, I “train” him to tie a bow. David seems very content to pass the day with me in this manner. The institution staff, on the other hand, appear unsettled that we are still in each other’s company when I escort David to lunch and then collect him again an hour and a half later. They seem stunned when, at the end of the day, David and I seek out their audience to demonstrate his bow-tying. I get a grade A from the university for my paper entitled “Training a Mentally Retarded Man Using Behavioural Methods”.

* * *

In the second chapter of this book, Sandra Baum tracks over time the language and terminology used to describe people with intellectual disabilities. She also relates the changing definitions of intellectual disability over time to developments in service provision and philosophies of care for these so-described people. When I worked with David he was called “mentally retarded”, and along with this description of his identity came a set of expectations of what he was capable of doing and not doing, where he could or should live, and what he was entitled to.

This was the 1970s, when descriptions or diagnoses of “idiot”, “imbecile”, “feebleminded”, and “moral defective” were still in the hospital records of people like David, and the focus was more on deficiency than ability or possibility. Behaviourism was considered the treatment of choice for people labelled “mentally retarded” at that time, and relationships between so-called retarded people and their carers went unnoticed. Hence neither my tutors nor I addressed my relationship with David or the context in which he lived. Nobody considered as unethical my submitting David to learning a meaningless, useless activity; performing in front of bored staff; or objectifying him for the purposes of a psychology undergraduate’s learning experience. Neither did anybody notice that David seemed to enjoy my company and attention, that he was able to spend several hours engaging with me despite his “poor attention span”, nor that he had learnt a complex, albeit useless, task that was considered way beyond his intellectual capability. That David and I had enjoyed many warm giggles and handshakes (accompanied at first with bits of cheese and apple!) only minimally assuages some of the immense discomfort I still hold for engaging this young man in a pointless activity with no clear useful purpose to himself.

* * *

Moving forward to the early 1980s, I am now a trainee clinical psychologist working for six months in a large hospital for people identified as “mentally handicapped”. These people are not sick but live in a hospital. They are no longer “mentally retarded”, we are told, but “mentally handicapped”. Again, with this description come rights, obligations, and duties for these “patients”—as they are often still called—and their carers. As a trainee clinical psychologist at this time, it is compulsory to “do” a six-month placement “in Mental Handicap”. For the majority of trainees in my year, this is the least favoured placement. Most of us have booked as much leave as we are entitled to take during this placement so that we can complete just the required seventy-two days. What we dread—and many of us approach this placement with “dread”—is the institution, not the people. My supervisor has given me a book in which Frank Thomas writes about his experience as a nurse from inside an institution for mentally handicapped people (Ryan & Thomas, 1980). His account is chilling to read—the more so since it is still happening in the early 1980s. The power of Frank’s story deeply touches me and moves me. His story resonates with the experiences I am having at the hospital. It reassures me that I am not going mad—no one else seems to see, hear, and feel what I do. But the book also saddens me. Despite Frank Thomas having had his account published, things remain the same.

Each day I trudge up the hill to the “back wards”, as they are called, in the grounds of the hospital, set in the beautiful Hertfordshire countryside. Often it is snowing. I am clad in a thick second-hand trench coat, and my feet are freezing. Supervisors never work in the “back wards” themselves—that is where they send trainees. I pass middle-aged women pushing dolls’ prams and talking to themselves. I guess they got there as “moral defectives” in their day. Waiting to speak to a nurse in one of the locked wards, where the nurses always carry huge bunches of keys attached to their belts, like prison wardens, I witness men and women between the ages of 20 and 35 in ill-fitting clothes. They are queuing up for medication, and then returning to rock and sway in corners. There is always the stench of urine and some other indeterminable sweet–stale smell—even the water tastes funny.

I ache physically and emotionally the entire six months I work at this hospital. And that does not include the days I had to have hepatitis B injections because a “Hep. B carrier” scratched me—no one told me to take care, so I allowed far more physical contact than anyone else did. Or the day I was hit in the face by a young woman whom I naively went to console, having witnessed her tearful withdrawal and then head-banging following an episode of taunting and mocking by two young nurses.

* * *

What Sandra Baum tells us in chapter two is that changing historical, political, and social contexts continually modify how and whom we define with intellectual disabilities and the language we use to describe them. We learn from her chapter that these definitions have always been conceived of by people in power. They are never the words chosen by a group of people describing or finding their own identity. Making distinctions between other people with language is never neutral. People distinguished with “mental retardation”, “mental handicap”, or “intellectual disability” have mostly been seen negatively, as a problem to themselves and to others. These terms are used for extremely different presentations of ability, which is a source of pain to those described who find it difficult to differentiate themselves as individuals in the eyes of others and to escape others’ stereotypes of them.

The medicalization of intellectual disability has been the main instrument for excluding people from society. The medical model has invited us to focus on the difference between these people and ourselves rather than on the similarities. The authors in this book keep us mindful of the exclusion these people endure. With “normalization” (Wolfensberger, 1972) we were encouraged towards reducing difference rather than exaggerating difference and towards inclusion rather than exclusion. The authors of this book are writing in the context of “valuing people” (the title of an English White Paper: Department of Health, 2001). They acknowledge the difference of people identified with intellectual disabilities when it offers resources, also taking care to appreciate their equality to ourselves so that we do not disqualify them from the ways of living we take as our human rights. The authors of this book have found that the systemic approach offers the possibilities of enabling and empowering the people they work with to access their rights to independence, choice, inclusion, respect, and accessibility. Sabrina Halliday and Lorna Robbins (chapter three) set up their lifespan service with social inclusion as a primary intention. They noted an absence of family therapy services for devalued groups and wanted to offer the choice of family therapy services to people with intellectual disabilities who traditionally would not have easy access to this form of therapy.

What is systemic?

Like the language used to connote “intellectual disability”, the word “systemic” holds many meanings that have changed and evolved over time according to historical and political contexts. Freedman and Combs (1996) identify different metaphors across different phases of systemic developments that guide the thinking and practice of systemic practitioners, both highlighting and obscuring what they attend to. The use of the word “phase” here is intended to connote continuity rather than discontinuity. Therefore it implies that systemic principles and practices have emerged during a particular phase and then continued to evolve and influence practice in different ways over time. Hence I am not suggesting that systemic ideas or practices identified as emerging during one phase are viewed as fixed in that time or history or seen as out of use in current practice.

* * *

I was first introduced to systemic practice during what Dallos and Draper (2000) refer to as the “first phase”, when systemic practice was informed by the discourses of modernism, positivism, and structuralism. During this phase, commonly referred to as “first-order cybernetics”, we were using the metaphor of physical systems to guide our practice and were informed by the family systems paradigm. What most engaged me with the systemic approach at that time was the emphasis on pattern and process and hence the recognition that the whole was much more than the sum of its parts. What I particularly appreciated was the focus on relationships, communication, and interaction—that is, what was happening between people rather than within people—since this moved us away from pathologizing individuals and towards viewing symptoms as interpersonal. In our practice we were therefore moving away from organizing events into linear sequences so that they could provide us with neat cause-and-effect explanations of problems, towards identifying circular patterns that connected symptoms with relationships and communication (Watzlawick, Beavin, & Jackson, 1967).

At this time we saw systems as stable and unchanging, so that our approach to family systems was somewhat mechanical. We focused on how families became “stuck” in repetitive loops of redundant behaviour or in inappropriate hierarchical structures that were unbalanced. We designed interventions for therapists to interrupt those patterns and guide families into healthy rather than unhealthy stability. With its emphasis on a functionalist view of problems, first-order cybernetics was inviting me to treat dysfunction as the focus of therapy at this time.

Using physical systems and “structure” as guiding metaphors in this way, we approached families akin to machines and therapists as something like repairers (Hoffman, 1988) whose job it was to design appropriate interventions to change the existing family structure. Assuming that we were quite separate from the people we worked with, we saw ourselves as therapists capable of making detached, objective assessments of what was wrong and fixing people’s problems like a mechanic fixes a faulty thermostat. Thus I found the cybernetic metaphor inviting me to treat clients as objects about whom I knew the truth. This objectification in turn risked inviting clients into a relationship in which I positioned myself as the knower, as the expert, and the client as the powerless, passive recipient needing my expertise.

In the 1970s and early 1980s most adults identified or, indeed, diagnosed as mentally retarded or mentally handicapped who were receiving psychological services were living in institutions. Since first-order cybernetics focused on the family, and commonly the nuclear family, rather than the wider system, systemic theory and practice seemed to pass by practitioners working with “mental retardation” at this time. The ethos of first-order cybernetics, with its focus on dysfunction, conflicted with the highly valued ethos of “normalization” in the 1980s, so that once again systemic theory and practice did not connect with our work with people identified with “mental handicap”.

* * *

The authors of this book do not fully embrace all the systemic approaches, methods, and techniques informed by first-order cybernetics, perhaps because of the poor fit of some of these with their preferred ethical position that emphasizes valuing people and avoiding a focus on dysfunction. Also they work beyond the nuclear family to include carers and wider networks of significant relationships, with a commitment to including and giving voice to people with intellectual disabilities. However, throughout the book we see how some of the core ideas and practices emerging in this phase continue to be used and have evolved in different ways to inform current practice. For example these authors develop and incorporate into their practice the focus on context, relationships, communication, and interaction—that is, what happens between people rather than within people—which emerged in this first phase of systemic developments to distinguish systemic practice from other linear therapeutic approaches. Below, to whet your appetite, I share some examples of how these authors have used the concepts of context, communication, connections (in relationship), and circularity from this first phase.

* * *

I completed my formal training in systemic family therapy during the second phase, which we have now come to refer to as “second-order cybernetics” (e.g., see Boscolo, Cecchin, Hoffman, & Penn, 1987; Campbell, Draper, & Huffington, 1991). Systemic practitioners at this time were acknowledging that the therapist could not stand outside the family system and gain an objective view of the situation. Instead, the therapist was seen as a part of the therapy system. Hence there was a move away from the idea that anyone could perceive an objective reality towards a valuing of multiple perspectives. With this shift we began to adopt less of an expert position with clients and to see ourselves more as co-participants in the same system as family members, intending to explore collaboratively with them rather than fix or solve their problems.

Instead of the metaphors of machines and thermostats, therefore, systemic therapists started thinking in terms of biological and ecological systems and of systems as continually changing and co-evolving rather than as fixed or stable. As therapists, therefore, we began to expect and attend to how systems were changing rather than how they were “stuck”. Whereas within the family systems paradigm we expected to be able to predict the behaviour of family members, from within the ecological systems paradigm we recognized human biological systems as far more complex than machines. Thus we intended to engage clients in the exploration of hypotheses from a position of curiosity (Cecchin, 1987) so as to introduce difference and open space for change. Consequently we were less intent on reaching our predetermined goals and more concerned to check that we were moving in the preferred directions of our clients. Instead of focusing only on patterns of behaviour, we began also to explore patterns of meaning and became curious about how meanin...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Series Editors’ Foreword
• Acknowledgements
• Contributor
• Foreword
• Introduction
• 1 Working systemically with intellectual disability: why not?
• 2 The use of the systemic approach to adults with intellectual disabilities and their families: historical overview and current research
• 3 Lifespan family therapy services
• 4 Setting up and evaluating a family therapy service in a community team for people with intellectual disabilities
• 5 Engaging people with intellectual disabilities in systemic therapy
• 6 New stories of intellectual disabilities: a narrative approach
• 7 Supporting transitions
• 8 Who needs to change? Using systemic ideas when working in group homes
• 9 The practitioner’s position in relation to systemic work in intellectual disability contexts
• 10 So how do I . . . ?
• References
• Index