Practice Issues in Sexuality and Learning Disabilities

Ann Craft

• Publisher: Routledge
• Year: 2004
• ISBN:
  9781134933341
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Practice Issues in Sexuality and Learning Disabilities explores the sexual behaviour of people with learning difficulties and addresses issues of concern such as sexual abuse, HIV and AIDS, service provision for those from ethnic minorities, the development of policy guidelines and the implementation of such guidelines in this intensely personal area. Ann Craft draws upon professional expertise from a broad range of backgrounds including social work, psychology, and medicine. She offers practical ideas and suggestions for service responses which acknowledge and respect the right of people with learning disabilities to express their sexuality in ways that are valued by other members of their society.
Practice Issues in Sexuality and Learning Disabilities will be of interest to all whose work or relationship brings them into contact with people with learning disabilities - professionals, carers, parents, advocates. It will be invaluable to social workers, practitioners in social work and health, trainees, training officers and voluntary organizations.

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Personal relationships and sexuality

The staff role

Ann Craft and Hilary Brown

INTRODUCTION

Whether members of staff are conscious of it or not, they play a central part in the personal relationship needs of people with a learning disability. They are inevitably drawn into a form of intimacy, in physical caring, in emotional responsiveness, in social activities and networks, which has no obvious parallel. To meet the demands placed on them they may draw on a range of models to guide them about appropriate involvement and boundaries, they may base their relationships on those they have with their children or siblings, with friends or colleagues, or on more established ‘professional’ roles such as that of a teacher, counsellor or social worker. Any of these may be valid, in whole or in part, but all imply different approaches to:

• goals of intervention
• style of work
• expertise and knowledge
• appropriate distance
• mix of control and empowerment
• accountability and openness.

By looking more closely at what these roles involve it is hoped that we can delineate a distinctive mode of working on sexuality issues, which enables staff to be more purposeful and empowering in their work with individuals with a learning disability.

The chapter has three main sections. First we will look at the general context of professional interactions between staff and individuals with a learning disability. Second we shall explore the various aspects of a positive staff role in relation to the personal relationships and sexuality needs of service users. Third, we will consider the needs of staff if they are to fulfil this positive role.

THE CONTEXT OF STAFF/SERVICE USER RELATIONSHIPS

Before looking specifically at the staff role in relation to client needs in the area of personal relationships and sexuality, we need to look at the general context in which professional staff interact with clients who have learning disabilities. As Brechin and Swain (1988) point out in their thoughtful analysis, ‘Relationships between professionals and people labelled as having a mental handicap have their origins in past and present social structures and attitudes’. The authors characterise and describe the two main approaches to people with learning difficulties which have been prominent in the past fifty years—the medical approach and the educational approach. Both approaches:

assume that existing social constructions of normality define the goal to which people with learning difficulties must aspire; both define and understand the ‘problems of mentally handicapped’ people in such a way as to indicate clearly the impossibility of ever achieving that goal (the best hope being to build up patterns of skills which approximate to ‘normal’ behaviour); and both create a professional/client relationship which enshrines the professional in a world of exclusive and privileged knowledge, and consequently entombs the individual with learning difficulties in a fundamentally dependent role.

(Brechin and Swain 1988)

Brechin and Swain suggest that the aims of the comparatively recent self-advocacy movement, with its emphasis on self-actualisation and an open-ended process of growth, can be used ‘as a kind of litmus test of appropriateness against which professional approaches can be measured’. Their outline for shared action planning (Brechin and Swain 1987) is an attempt to foster partnership, to build up a ‘working alliance’ (Deffenbacher 1985).

In conclusion, Brechin and Swain (1988) suggest that from the perspective of people with learning disabilities, a working alliance with professionals should seem:

• to be an entitlement rather than an imposition
• to promote self-realisation rather than compliance
• to open up choices rather than replace one option with another
• to develop opportunities, relationships and patterns of living, in line with their individual wishes rather than rule-of-thumb normality
• to enhance their decision-making control of their own lives
• to allow them to move at their own pace.

Each of these six points has relevance when we consider the personal relationship and sexuality needs of individuals with a learning disability and the way in which services and members of staff respond to them.

An important part of this context of staff/service user relationships is the ‘increasing tendency to articulate a set of principles setting out what are believed to be the “rights” of clients’ (Hudson 1988). Craft (1987) suggests six rights pertaining to sexuality:

• the right to grow up, i.e. to be treated with the respect and dignity accorded to adults
• the right to know, i.e. to have access to as much information about themselves and their bodies and those of other people, their emotions, appropriate social behaviour, etc. as they can assimilate
• the right to be sexual and to make and break relationships
• the right not to be at the mercy of the individual sexual attitudes of different care-givers
• the right not to be sexually abused
• the right to humane and dignified environments.

However, because of the nature of intellectual disability, societal attitudes and the structure of services, many individuals with learning disabilities require some degree of help and assistance in exercising those (and other) rights. This enabling process may take place at different levels, ranging from one-to-one counselling to the adoption of policy guidelines across a whole service.

THE STAFF ROLE

Staff members as role models

Whether staff members like it or not, whether they acknowledge it or not, they are enormously powerful in the lives of people with learning disabilities. Powerful in terms of the physical environments that are provided in day and residential services; powerful in terms of the social environments that they create; powerful in the spoken and unspoken feedback they give about client aspirations and behaviour; and powerful in offering models of adult men and women with adult lifestyles making adult choices (Bandura 1977).

Much of the modelling is at a very informal level. Nevertheless it has strong influences on many of the people with whom staff members come into contact. The way that managers interact with staff, staff with colleagues, with people with a learning disability, the way that staff members show pleasure, anger, approval, disapproval, that they are upset, that they are having an off day, all give messages to others. Do members of staff model respect for the feelings and attitudes of others in the way that they talk to them? Do they respect people’s need for space and privacy? Does the language they use accord dignity to people? Is it age-appropriate? The danger is that staff members’ way of relating gives the message, ‘do as I say, not as I do’. Implicitly staff may model one way of interacting with others, while explicitly they are telling those others that they should behave in a different way.

As in the example below, some of the models of adult interaction offered by members of staff can be a source of confusion and frustration to individuals with learning disabilities.

Gerald, a man with moderate learning disabilities, had recently moved from a hospital setting to a group home. After a few months staff asked for help in managing Gerald’s ‘aggressive outbursts’. On one occasion he had broken the windscreen wipers on a visitor’s car, on another he had smashed the same car’s headlights. He had also pulled his key worker’s hair and threatened to punch her when she remonstrated with him for giving her a bonecrushing hug.

On investigation it transpired that Gerald, coming from a male hospital ward with male staff, was convinced that his female key worker’s enthusiastic involvement in his progress and wellbeing was a sign of sexual interest. This misapprehension had been fostered unthinkingly by other members of staff, who at first jokingly agreed with Gerald when he referred to his key worker as his ‘girlfriend’, then actively promoted by teasing remarks such as, ‘poor Gerald, your girlfriend’s not here today’.

Gerald’s key worker was inexperienced. She had not challenged Gerald’s early references to her as ‘my girlfriend’. As she said, ‘I didn’t think there was any harm in it, and he looked so pleased to see me I didn’t want to spoil the relationship I was building with him’. Similarly, although she later commented that Gerald’s physical approaches increasingly made her feel uncomfortable, she had not objected at first because she knew how emotionally impoverished his life in the hospital had been. The damaged car belonged to the key worker’s boyfriend, understandably seen by Gerald as a rival for her affection.

Gerald, with few models to draw upon, was for a time confirmed in his beliefs by the explicit validation and repetition of his verbal claims, and by the acceptance of physical touch. Staff chose to amuse themselves with what they saw as ‘only harmless teasing’; Gerald’s key worker allowed her boundaries of personal space to be invaded on the mistaken assumption that she was somehow compensating for past deprivation, and that this and the joking remarks were justifiable because they increased the rapport she needed to establish as a good key worker.

While members of staff and the key worker were all clear in their own minds where the boundaries lay—that Gerald was not, and would never be her boyfriend—Gerald had no means of knowing this. The seemingly abrupt volte-face by his key worker and the disapproval of other staff when their limits of tolerance were reached confused and upset Gerald. It required careful reappraisal on everyone’s part to arrive at acceptable boundaries of language and touch. Gerald paid an unacceptably high price in terms of his mental health, his self esteem and self confidence.

It is not only personal boundaries which can become confused in this way but more diffuse gender expectations and roles may be passed onto people with learning disabilities in contradictory ways. Despite equal opportunities statements and commitments, services on the whole replicate patterns of inequality within the home, with their predominantly female workforce but male management. Men with learning disabilities are thus offered role models of men ‘in charge’, who are able to command respect and use their status with the women who are employed as care staff, while they themselves are ‘under’ the control of those women. Men with learning disabilities react differentially to staff depending on their place in the hierarchy. Brown and Ferns (1991) filmed a black woman who reported an incident in which a resident had taken advice from a male care worker and from a white woman who was a deputy manager, but ignored her input. These issues are difficult to acknowledge but important. This man, while his behaviour, being racist and sexist, is unacceptable, is perhaps also trying to find out where he stands in the hierarchy, and how he can legitimately assert himself as a man i...

Table of contents

• COVER PAGE
• TITLE PAGE
• COPYRIGHT PAGE
• CONTRIBUTORS
• ACKNOWLEDGEMENTS
• 1. PERSONAL RELATIONSHIPS AND SEXUALITY: THE STAFF ROLE
• 2. WORKING WITH PARENTS
• 3. UNDERSTANDING AND RESPONDING TO DIFFICULT SEXUAL BEHAVIOUR
• 4. SEX EDUCATION IN THE MULTIRACIAL SOCIETY
• 5. SEXUAL ABUSE OF INDIVIDUALS WITH INTELLECTUAL DISABILITY
• 6. COMPETENCY AND CONSENT: THE IMPORTANCE OF DECISION-MAKING
• 7. BETWEEN OURSELVES: EXPERIENCES OF A WOMEN’S GROUP ON SEXUALITY AND SEXUAL ABUSE
• 8. WORKING WITH SEXUALLY ABUSED INDIVIDUALS WHO HAVE A LEARNING DISABILITY
• 9. A MODEL CLINIC APPROACH FOR THE REPRODUCTIVE HEALTH CARE OF PERSONS WITH DEVELOPMENTAL DISABILITIES
• 10. HIV/AIDS AND SAFER SEX WORK WITH PEOPLE WITH LEARNING DISABILITIES
• 11. RATIONALE, APPROACHES, RESULTS AND RESOURCE IMPLICATIONS OF PROGRAMMES TO ENHANCE PARENTING SKILLS OF PEOPLE WITH LEARNING DISABILITIES
• 12. INTERVENTIONS WITH A PREGNANT WOMAN WITH SEVERE LEARNING DISABILITIES: A CASE EXAMPLE
• 13. ALMOST EQUAL OPPORTUNITIES… DEVELOPING PERSONAL RELATIONSHIPS GUIDELINES FOR SOCIAL SERVICES DEPARTMENT STAFF WORKING WITH PEOPLE WITH LEARNING DISABILITIES
• APPENDIX