Growing up with Parents who have Learning Difficulties

Tim Booth, Wendy Booth

• Publisher: Routledge
• Year: 2005
• eBook ISBN: 9781134706969
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Growing up with Parents who have Learning Difficulties uses a life-story approach to present new evidence about how children from such families manage the transition to adulthood, and about the longer-term outcomes of such an upbringing. It offers a view of parental competence as a social attribute rather than an individual skill, assessing the implications for institutional policies and practices. The authors address the notion of children having to parent their disabled parents and argue for a shift in emphasis from protecting children to supporting families.This innovative book provides a fresh approach to a subject rife with prejudice and challenges us to think again about many taken-for-granted ideas about the process of parenting and the needs of children. It also demonstrates the power of narrative research and its capacity for bringing alive people's experience in a way that enables us to better understand their lives.

Chapter 1

Introduction

This book is about the stories of people who grew up in families where at least one parent had learning difficulties.

At one level, it is a book about parenting by mothers and fathers with learning difficulties as seen through the eyes, and judged by what has become, of their now-adult children. It is also about growing up with a disabled parent or parents, and, hopefully, it goes some way to meeting what Buck and Hohmann (1983) identified as a ‘dire need for further research’ into children’s adjustment to parental disability. But the relevance of the study extends beyond the immediate group of parents to which it refers. Surprisingly little is known about what constitutes good-enough parenting or about the relationship between parental competence, family functioning and child outcomes. Looking at out-of-the ordinary families throws new light on taken-for-granted assumptions about the process of parenting. Parents who break the rules help to define them more clearly. Observing children under pressure shows up the extent of their adaptability. Studying parenting on the margins of competence provides a new perspective on the limits of parental adequacy.

There are no reliable estimates of the number of parents with learning difficulties. Their true prevalence is unknown and probably unknowable. They represent a still largely invisible population. There is no list or register. Conducting any sort of count is well nigh impossible in practical terms. At the margin, they merge into the general population. Most sources agree, however, that the number of people with learning difficulties who become parents is steadily growing, and will continue to do so, as a result of hospital closures, decreased segregation, changing attitudes towards sexuality and wider opportunities for independent living and participation in the community. Parenthood may be seen as both a choice and a consequence of ordinary living. As and when people with learning difficulties are freed from invasive control of their own sexuality so more of them will have children. The same trend has been reported in Britain, America, Australia, Canada, Denmark and Germany. The need for a better understanding of the consequences for children of growing up in such families and of how their parents might best be supported becomes ever more urgent as their numbers rise.

Parents with learning difficulties are widely presumed to present a high risk of parenting breakdown. Successive studies have reported high rates (40–60 per cent) for the removal of children from the family home (Accardo and Whitman, 1990; Cross and Marks, 1995; New York State Commission on Quality of Care for the Mentally Disabled, 1993b; Scally, 1973). Research also suggests that the children of parents with learning difficulties are at risk of developmental delay, maltreatment, neglect and abuse (Schilling et al., 1982). This evidence has contributed to the view that people with learning difficulties lack the competence to provide good-enough parenting. Oliver (1977), for example, asserts that they ‘continue to be incompetent rearers, whatever supportive treatment is offered’, and Fotheringham (1980) too claims that few parents have the ability to provide ‘conditions of care at the minimal acceptable level’. Accardo and Whitman (1990) argue that the only important question ‘with regard to parenting failure of significantly mentally retarded adults would seem to be not whether but when’.

The study on which this book is based arose directly from earlier work in which we documented the lives and struggles of parents with learning difficulties through personal accounts of their own experience of child-rearing and parenthood (Booth and Booth, 1994a). This research showed that such blanket judgements of parental incompetence are not grounded in the lives of parents themselves. The statistics on child removal owe as much to the decisions of professionals and the courts as to the behaviour of parents. The fact is that people with learning difficulties frequently fall victim to an expectation of parental inadequacy that is made real through the decisions and actions of those with the power to intervene in their lives. This ‘presumption of incompetence’ renders parents with learning difficulties vulnerable to discriminatory treatment and prejudicial judgements about their ability to cope with the demands of parenthood. From this point of view, parental competence is not just an attribute of the person but an attributed status that reflects the normative standards used for defining good-enough parenting by those charged with making the assessments (Booth and Booth, 1996a, 1996b). Another crucial factor working against parents with learning difficulties is the emphasis currently given to the protection of children at the expense of their broader welfare needs and the support of their families (Farmer and Owen, 1993; Parton, 1991; Thorpe, 1995).

A common response to this research was that we had argued a case for parents that did not take account of the interests or welfare of their children (Schofield, 1996). What, people wanted to know, becomes of children who grow up in such families? This study began as an attempt to address this question.

Almost nothing is known about the grown-up children of parents with learning difficulties. There has been no longitudinal research on the effects of being raised by a parent or parents who have learning difficulties (Tymchuk and Feldman, 1991), and no attempt has yet been made to chart their children’s progress through adolescence and into adulthood (Dowdney and Skuse, 1993; New York State Commission on Quality of Care for the Mentally Disabled, 1993b). Consequently, ‘little can be said as yet about the long-term effects of parenting’ by people with learning difficulties (Zetlin et al., 1985). The problems of tracking them down and eliciting their co-operation have stalled investigation and deterred researchers who, instead, have focused their attention on more get-at-able infants and toddlers. Most studies have been attached to early intervention programmes that focus mainly on families with young children aged from birth to three years (Tymchuk, 1990a). This fact has not stopped people from speculating about the longer-term risks of such an upbringing. They have simply projected the developmental deficits observed and assessed among young children into later life. The result makes for some gloomy prognostications. Accardo and Whitman (1990), for example, suggest that parents’ difficulties ‘in meeting the developmental and behavioral needs of pre-school children seem to intensify and become insurmountable with late school-age children and adolescents.’ Consequently, the children are presumed to grow into less than competent adults for want of the example and guidance they need in order to mature properly (McFadyean, 1995).

Such ideas illustrate what Wolin and Wolin (1995) have called ‘damage model thinking’. The damage model portrays children from troubled homes as helpless victims whose struggle against the odds eventually takes its toll in forms of pathological adaptation in adolescence and adulthood. Several considerations counsel against making any simple connections between the quality of parenting received in childhood and the quality of life enjoyed in adulthood. For a start, mothers and fathers are not the only people who are involved in bringing up children (Rapoport et al., 1977). Other parent-figures— family, friends, neighbours, professional helpers—can provide cover where mum and dad are stretched, and the family support system can compensate for shortcomings in the skills of parents to ensure adequate care for the child (Tymchuk, 1992). Also, it has long been known that some children exhibit a resilience in the face of adversity and manage to thrive despite poor care and lives filled with difficulty. In any case, parenting is not a one-way street. Children themselves play an active part in seeking out and constructing environments that sustain their needs (Werner, 1993). People’s destinies are not laid down in early childhood. Early learning certainly exerts a crucial influence on development but it may also be modified as a result of later experience (Rutter, 1974). Lastly, ‘damage model thinking’ easily gives way to a self-fulfilling prophecy on the part of professionals who, pessimistic about the prospects for the child, fail to support the parents and so bring about the outcomes they fear. All these factors suggest that the relationship between parental competence and child outcomes across the life cycle is far more complicated than the damage model allows. A key aim of this study was to try to unravel this knot through the lives of now-adult children brought up in families widely judged to operate on the edge of competence.

The research was designed to explore four main themes:

•  What does it mean to be brought up by a parent or parents with learning difficulties?

•  Does being raised by parents with learning difficulties affect children’s well-being and adjustment in later life?

•  How do children cope with their parents’ learning difficulties?

•  Is there a clear link between parental competence and child outcomes?

We have chosen to use narrative methods for tackling our task, by which we mean methods aimed at depicting people’s subjective experience in ways that are faithful to the meaning they give to their lives. Narrative methods vary in their forms and purposes. The purest form of narrative is the autobiography where the subject is also the sole author. Reminiscence is the unstructured recalling of past events and feelings without any attempt to be inclusive or thorough about the life course. Life review is a process of reflection in which people appraise their own past from their standpoint in the present. The life story is a collaborative account of all or part of an individual’s life, delivered orally by that person to an amanuensis. The life history subsumes the life story but also includes biographical information from a range of other sources.

These narrative forms may serve a variety of uses. For example, adapting Abrams (1991) slightly, five overlapping categories of narrative may be identified. First-person agony narratives recount painful experiences as a means of challenging the moral or social order through the sympathies or conscience of the reader (see, for example, Ashe (1989) who weaves her own experience of childbirth into an examination of the legal regulation of reproduction). Insider narratives aim to provide an insight into subjective worlds beyond the reader’s ken (see, for example, Lewis’ (1961) classic account of family life in a Mexican slum). Grounded narratives render abstract ideas accessible in terms of everyday human experience (see, for example, Williams (1991) on racism). Fringe narratives give voice to previously unheard or suppressed perspectives (see, for example, Jane Fry’s account of her life as a transsexual in Bogdan (1974), or Parker (1991) on ‘lifers’). Finally, mould-breaking narratives help to reformulate a problem, cast something in a new light or otherwise change our understanding (see, for example, Warshaw (1989) on the date rape phenomenon).

Despite this variety, narrative methods display a number of common characteristics:

•  They provide an ‘inner view of the person’ (Birren and Deutchman, 1991) by treating people as ‘expert witnesses’ in the matter of their own lives whose stories can provide a point of entry into their world through the imagination of the reader.

•  They are a means of making abstract claims more tangible by grounding them in concrete lived experience.

•  They help to counteract the problem of the ‘disappearing individual’ in sociological theorising where the search for abstraction and generalisation often renders people into little more than ciphers, and leads both scholars and students to lose sight of human individuals as a creative force in the making of their own lives and their own history.

•  They form a bridge between the individual and society by giving access through people’s lives to structural features of their social world. By ‘listening beyond’ (Bertaux-Wiame, 1981) the words of any particular informant, it is possible to pick up the echoes of other people’s experience and to identify the themes that make them also the stories of a group. These common threads connecting people’s accounts reveal how their lives are shaped by the wider society and throw light on the network of social relations to which they belong. In this way, as Ferrarotti (1981) has observed, the ‘effort to understand a biography in all its uniqueness…becomes the effort to interpret a social system’.

Three considerations have influenced our decision to adopt a narrative approach. First, there is no sampling frame for the focus group of adult children, and no possibility of guaranteeing the representativeness required for statistical generalisation. Indeed, the task of identifying, locating and securing the cooperation of subjects within this largely hidden population presents major logistical hurdles that have thwarted or deterred retrospective research in this field. Second, more structured methods of research run the risk of oversimplifying people’s stories and imposing order and meaning on lives that are ‘more ambiguous, more problematic, and more chaotic in reality’ (Faraday and Plummer, 1979). Third, the methodological problems of trying to establish a causal connection between family processes and later outcomes for people brought up by parents with learning difficulties are probably insurmountable. The use of narrative methods opens up the possibility of establishing a bridge using people’s subjective interpretation of their own lived experience. We have tried throughout the book to pay attention to the research issues raised by our study, and especially to what Lincoln and Denzin (1994) have called the problems of ‘representation’ and ‘legitimation’ presented by the narrative approach. We have also tried to experiment with ways of reporting our material that confront the challenge of doing narrative research with inarticulate subjects (Booth, 1995). Indeed, in writing a book about the stories told us by now-adult children of parents with learning difficulties, we like to think that we have also produced a text about the making of a narrative.

The chapters that follow are largely free-standing and, with the exception of chapter 7, which offers an analysis and commentary on the material presented in chapter 6, may be read in any order without detriment to the sense of the whole. Each provides a different angle on the same theme. Taken together, we have tried to present a sympathetic portrayal of what it means to grow up with a parent who has learning difficulties; one that is true to the experience it seeks to convey. Chapter 2 describes how the research was conducted and the difficulties it presented, and provides an overview of the people and families involved in the study. Given that half the informants in the study themselves had learning difficulties, chapter 3 addresses the challenge of undertaking narrative research with inarticulate subjects. Chapter 4 looks at how the people in the study managed the transition to adulthood, drawing on empirical indicators and evidence about the quality of their lives. Chapter 5 examines why some children overcome the adversities of their childhood and upbringing where others succumb, and considers how competence may be sustained by a supportive environment. Chapter 6 presents a personal narrative about growing up with a mother who has learning difficulties in the form of a first-person dialogue between two sisters. Chapter 7 provides an analysis and interpretation of the wider significance of the sisters’ story. Chapter 8 offers a critical appraisal of the notion of ‘reverse dependency’ or ‘role reversal’ as a supposed feature of relationships between disabled parents and their children. Chapter 9 shows the disabling effects that system abuse can have on families and illustrates the role that advocacy can play in enabling them to resist its threat. Chapter 10 draws out some of the implications of the study for policy and practice in supporting families in their parenting.

Chapter 2

Doing the research

In this chapter we describe how the research was done, the problems we encountered on the way, and the characteristics of our study group.

The target group identified for inclusion in the study comprised men and women aged (preferably) between eighteen and thirty years who had spent the greater part of their childhood living in a family where one or both parents had learning difficulties.

For research purposes, parents were held to satisfy the inclusion criteria if they were known to have received health, education or social services specifically designated for use by people with learning difficulties at some time in their lives, or if a professional who knew them personally confirmed that they had been so labelled. This was the only practical approach in the circumstances given that the parents themselves were not the subjects of the research, many were not seen or contacted and some were now dead. The expedient of using a person’s current or former status as a service user as a surrogate for unobtainable test or clinical data in order to establish their learning difficulties has both a theoretical rationale (Mercer, 1973) and an administrative precedent, being the method used by many health authorities to identify those who are eligible for registration with their case registers (Farmer et al., 1993).

The decision to target adult children in the eighteen to thirty age range was taken because we wanted respondents who were able to look back and reflect on their own childhood and upbringing from a position in the adult world, but whose memories were not too far distant from the events and experiences they described. Things did not quite turn out as planned. Difficulties in locating willing subjects and the way the introductions and interviews were set up (see below) meant that a number of younger and older people were admitted to the study. All in all, eighteen of the thirty subjects fell within the prescribed band while two were below-age and ten were over-age.

The research questions driving the study required that the adult children who took part had grown up mostly in the care of their parents at home, and had maintained contact with their family during any spell away from home. This requirement seriously limited the pool of eligible subjects. Research has pointed to high rates (40–60 per cent) for the removal of children from the family home. Of the twenty families involved in our earlier study of parents with learning difficulties (Booth and Booth, 1994a), fourteen had had one or more of their children placed in short-term or permanent care. Twenty to thirty years ago, when our prospective subjects were born, it is arguably even less likely than today that the interests of the child would have been seen as best served by remaining in a family headed by parent(s) with learning difficulties.

Many adult children were located who had spent too long away from their parents to qualify for inclusion in the study. In the context of people’s family lives it is not surprising that grown-up children with relatively secure and stable home backgrounds were hard to find. Crises of family survival precipitated by poverty, broken relationships or official intervention were pandemic. Only half (fifteen...

Table of contents

• Cover
• Halftitle
• Title
• Copyright
• Dedication
• Contents
• Acknowledgements
• 1 Introduction
• 2 Doing the research
• 3 Talking with Danny Avebury
• 4 What became of the children we used to be
• 5 Risk, resilience and competence
• 6 Still family
• 7 Two lives revisited
• 8 The myth of the upside down family
• 9 System abuse and the limits of advocacy
• 10 Where next?
• Bibliography