The subject of sexuality and disability is highly emotive, and difficult for carers and families to consider fully. If it's hard for them, we need to consider how difficult it must be for say, a woman with a learning impairment, in sheltered accommodation, to address. However, new legislation requires us all to reconsider this area with care and sensitivity, and to put into practice some fresh ideas and practices.
In this book I have drawn together many different strands of learning and experience relating to people with disabilities and those that care for them. My hope is that this will enable improved understanding and communication about this delicate subject, both between professional carers themselves and between them and their clients. I have remained aware of the potential conflict of interest between those who have a duty of care for their clients and their clients' own perceptions and needs, and have addressed this conflict throughout.
This work encompasses the legal framework, medical implications and ethical considerations of sexual expression in cared-for clients. It explores society's attitudes to impairment and challenges the logic of our assumptions about disabled people, and their assumptions about their carers.
The book arose partly from my work, but also from first hand experience of living with people with different impairments, and I am indebted to the many individuals, both clients and their carers, who have shared their thoughts and experiences with me over the years. The Social Model of Disability and recent Human Rights legislation provided a starting point and will be referred to throughout.
Chapter One: To be Human is to be Sexual
Although most women, and an increasing number of men, will have experience during their lifetime of caring for frail or vulnerable family members, this is often a temporary state of affairs, managed alongside other commitments. However, for a very large number of men and women, caring has become their profession and their way of life. These carers, paid and unpaid, are part of an almost invisible army, and the people they care for are still, despite our efforts, marginalized within our society. People who have serious impairments have little alternative but to accept some level of care to enable them to function with maximum efficiency, and to protect them from exploitation and physical or emotional harm. It is a mutually dependent relationship: the carer relies on having people with impairments to care for, and the person who is the recipient of that care has little choice in the matter.
Types of Relationships
Carers and clients
Care is not simply a matter of being pushed into town in a wheelchair, or guided through a shopping mall, which is what the general public may see, it is also about intimate body care, education, freedom of expression, psychological and spiritual well-being and physical safety, and even this isn't the whole story. The relationships that develop between carers and their clients are real ones; often strong, protective and affectionate, but they cannot include sexual intimacy.
For a carer, the sexual or affectionate expression of their client may leave them feeing very uncomfortable, aroused without wanting to be, alarmed and occasionally threatened. Rejection may become an issue for both parties, with the carer feeling guilty at not being able to offer their client more than an occasional affectionate gesture, and the client yearning for more and experiencing hurt and rejection when this is not forthcoming. Although logic tells us that everyone faces this situation at some time in their life, the inequality of the relationship with the person who is dependent makes this more difficult, since the carer and client have to live with this situation daily and contacts are not the fleeting transient ones available in the wider world.
Clients and outside relationships
The person with impairment who does venture out and starts to develop relationships may find their carers struggling to come to terms with this. The problems it poses are real ones, and carers fear blame if their client gets into difficulties, and feel that their professionalism and ability to protect their client are being called into question. Neither do they often feel comfortable about addressing sexual matters with their clients, as it may seem prurient or intrusive.
Clients and carers
Clients may feel inhibited from discussing their sexual needs and problems with those that look after them. Indeed, how many of us are happy to disclose such intimate matters to others, especially those close to us? It requires a certain level of assertiveness on the part of the disabled person to discuss how needs are to be met, uncover helpful information and take action. Where self-esteem is low, this is even more likely to be a problem.
This book is for both groups of people, and seeks to address the real dilemmas around sexual development and expression and the sensitive issues of duty of care, risk management, autonomy and human rights, as well as some of the practical implications of changes in legislation and practice, and the impact of the Social Model of Disability on those with impairments and their carers.
