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.

The Social Model of Disability

This model was developed by people who themselves had impairments. In the Social Model, impairment and disability are differentiated, impairment being the illness, injury or genetic condition that has a long term effect on the individual, while disability is seen as the loss of opportunity and equal rights because of society’s restrictions and barriers. Thus people with impairments are disabled by a Society that fails to accommodate them. To quote Manchester City Council, The Social Model of Disability 2003:

Disability is caused by social organisation which takes little or no account of people who have impairments, and thus excludes them from participation in the mainstream of social activities.

The Medical Model

The Medical Model of the past gave a different message – that the person and their malfunctioning body were the cause of the problem and as such should be satisfied with whatever help came their way. It is an approach that fosters low self-esteem and poor self-image. The Social Model requires a different thought process, one that challenges Society to make itself more inclusive and accessible. It says that it is Society’s responsibility, not that of the individual with the impairment, to provide normal mainstream experiences for all its members.

Empowerment of Clients

With the increasing emergence of schemes such as those pioneered by the Norah Fry Research Centre at Bristol University, in which learning disabled people have a say in the appointment of staff that will care for them, and the direct payment schemes which allow people with disabilities to directly pay for their own care, learning disabled people in particular are becoming increasingly empowered. Some would argue that this is long overdue, but a start has been made and the changes that will follow on, backed by legislation, will do much to change the social climate.

Workers andSettings

Carers form the backbone of professional and state funded organizations in many settings. They may have a background in nursing, social work, education, or be trained in Social Care, or from another discipline. Workplaces range from psychiatric units to day care centres, homes for the elderly, residential care homes, schools, rehabilitation centres and long stay hospitals. Carers in these settings have a wealth of experience and expertise in working with people with diverse disabilities. Alongside these professionals are parents, volunteer staff, classroom assistants, teachers and social workers, who are all involved in the care of people with special needs. But opportunities for different groups of carers and clients to meet to share their experience are few, and part of the purpose of this book is to bring together some of the different strands of understanding and practice now being developed as part of our understanding of the Social Model of Disability, and that indicate change both for clients and their carers. Backing up the Social Model is the Human Rights legislation that presents a legal imperative for these changes.

Over the last few years, this has required some difficult and anxious adjustment for staff and parents of people with impairments, especially in the area of sexuality and disability.

Historical Context

In A History of Disability Stiker (1997) explains that it was only after the First World War when so many soldiers returned as amputees that disability was accorded any sort of status and the rehabilitation of all these young men required a concerted effort on the part of the State. Financial assistance was provided for these men and their families. These disabled war veterans took the place of other disabled groups that had already been absorbed into society, mostly because they had been disabled since birth.

The State focus shifted eventually from World War veterans to the tubercular, and then to those wounded in the Second World War. In the Fifties, another category came to the attention of the State: those with a developmental delay. Although the financial acknowledgement of the cost of care and rehabilitation was now in place in most instances, the State had complete responsibility for all aspects of the disabled person’s life. First, the medical establishment had ownership of the knowledge of the person’s condition and diagnosis. Then there was further control over medication and treatment, which might involve residential care. Finally the residential setting itself was also under the control of the State.

There was State management of the education of disabled people. The State also governed any subsidies that might be spent on rehabilitation, or therapeutic assistance such as physiotherapy, speech therapy or psychotherapy. In every area of a person’s life the State dictated from a position of power how they were cared for, where they lived, how much money they should have, their training, their education and their job prospects, if any. Most of the State provision was targeted, and involved the separation of the disabled person from the mainstream (and quite often his or her family), and was usually conditional. The impaired person had no voice and his or her family were put in the position of having to accept the judgement of “experts” in managing their care.

The separation of young children from their parents left many children further traumatized. Valerie Sinason, (1994), writing about therapy with learning disabled people with multiple handicaps, cites how as adults they often became extremely distressed and regressed when faced with the loss of a carer with whom they had had a bond, and how this brought back memories of the loss of their parent. They could not articulate this and so the reason for their distress was often not understood.

Psychological Factors

This enforced separation of disabled people, which the Social Model and policies of inclusion are now addressing, has in the past been psychologically comforting for the non-handicapped world. If we cannot see and engage with the disabled people around us we do not have to confront our feelings about them. We feel better about ourselves, with our (as yet) unimpaired bodies and minds, in comparison with those who have a discernable handicap. The contrast enables us to feel superior, lucky, and somewhat guilty in relation to those who do not have what we have, and we may resent them for making us feel guilty and overcompensate to alleviate this guilt. What we fear about them is that they present us with a reminder of our own frailty, the arbitrary nature of accident or illness, and our own mortality.

What we fear we first shun, then deny or destroy. We need them to be away from us, divided off in some way, for this to happen, or we are faced with the inconvenient reality of them being there next to us, as equals, doing all the things we do. This splitting off of unwelcome aspects of the self is part of the human condition, but leads to stigmatisation, scape-goating and de-humanising of others unless we acknowledge and work with this.

The Longer View

In the more distant past, disability has been seen in many different ways. Often it was perceived as a threat. Lepers were shunned, old women burned as witches, impaired children left to die, and those with a disfigurement were thought to be cursed. A certain amount of schadenfreude is part of the human condition, after all. (I am all right. You are handicapped.) Historically, people with learning impairments were absorbed into the society they lived in, which supported them at some level and in which they found a place, if they survived infancy. Some with more visible impairments – scoliosis, cerebral palsy, cleft palate- had to manage as best they could, and the stigma associated with these conditions was arguably as disabling as the condition itself. There were many more who suffered from enduring forms of mental illness and who existed as hermits, oracles, and religious visionaries, as well as charismatic leaders, despots and creative geniuses. These people are scattered through the pages of history, from Joan of Arc and Ivan the Terrible, to Van Gogh and William Blake, from Gerard Manley Hopkins to Virginia Woolf. There was then no State provision for the disabled person, although there were madhouses for people with acute mental illness and some privately funded care for others.

Identification and objectification have gone hand in hand. When objectification happens, people are labelled a certain way and lumped together with others, which has the effect of reducing people with disabilities to objects deserving of our charity, and does not recognise them as separate individual people. The first Mrs Rochester, for example, in Jane Eyre was labelled “mad” and therefore dangerous and kept conveniently locked away.

The traditional figures of Shakespeare’s Fool, Bottom, and Caliban, who are outcasts from mainstream society, are viewed as having wisdom, coupled with a lack of fear of those in power, and thus become unwitting mouthpieces for a majority. This naïve honesty marks them out as continuing a tradition of truth being told by fools and children. In fiction, the figures of Quasimodo, Captain Ahab, and the Beast, though dangerous, evoke pity in the reader. There is, we think, nobility in their suffering and need. Their disability, though initially dangerous, becomes sentimentalised and therefore safe. In Victorian times and later, disabled people were sometimes seen as stoic heroes, like Katy Carr, Tiny Tim and Smike, although they were still to be pitied, while others, like the first Mrs Rochester, Blind Pugh and Captain Hook, were to be feared.

Seen as heroic, pitiable, freakish, passive; romantic even, the impaired person was still not viewed as themselves, whole and unique, warts and all. People with impairments were then (and still are) objectified as sages, bogeymen; objects of pity, freaks and burdens. Whatever they were perceived as being, it was not who they really were.

Disability and the Media

Shakespeare writing in 1994 claims that well-meaning charities working for people with impairments were partly responsible for promoting objectification. We can give money to alleviate our sense of guilt and feel superior in the process. This is demeaning to the recipients. Thus altruism becomes an aggressive act and giving “alms to a beggar” enables us to feel both generous, powerful and in charge of our lives and assuages our feelings of guilt. It also allows us to move away from the beggar in question, having “bought them off”. Fear and denial are powerful elements in the individual’s drive to survive and stave off the arbitrary nature of human illness, pain and suffering, old age, misfortune, death. We are all driven by a sense of fear of what threatens our security and our survival, and strive to control it in various ways.

Media Myths

The difficulty we, in a generally non-disabled society, seem to have with this issue is demonstrated in films, advertisements and literature, where disability is treated as a curiosity, a means of emotional blackmail to persuade us to give money, or as a political weapon. In crime reporting and in “true life” stories in women’s magazines, disability adds a sensational element, whether in the form of “Frail pensioner robbed at knifepoint,” or “My miracle baby.” Thus the older woman who has no name, no history and no voice becomes objectified as the “frail pensioner”, a statistic in the crime figures and another victim, both of the mugger and the media, while the miracle baby may never get rid of the label and be herself in the eyes of her parents.

Barnes (1992) wrote that people with impairment are still portrayed by the media as medical problems, criminals, people to be patronised, without proper human status. These stereotypes are in themselves disabling. If these people with impairments refuse to allow us our curiosity, our pity and our charity and insist on being themselves and joining us in the mainstream, we can no longer feel so good about ourselves in relation to them. We can no longer objectify them and lump them together as a group of people who are “out there”, different to us, and being different, not part of the mainstream of human existence. Morris (1991) summed this up succinctly by saying what this presently means for the person with an impairment:

It is the knowledge that each entry into the public world will be dominated by stares, by condescension, by pity and by hostility.

She makes the point regarding the media:

Where am I – as a disabled woman – in the general culture that surrounds me? Generally I am not there. I could watch television for years, possibly a lifetime, without seeing my experience reflected in its dramas, documentaries, stories. 

Ongoing Struggles

This problem of attitude and awareness, which has been likened to the struggle other distinct and objectified groups are going through and have been through, is the main barrier to change. There is a parallel with the struggles of other sectors for equality. The feminist struggle has brought changes, and women have benefited in status and legal standing, with changes in the law and code of conduct enabling this, but the question of attitude and practice still remains. Ethnic groups are engaged in a similar struggle. Our culture invalidates their experience through ignoring them, and provides few points of reference. For the person with an impairment there is an awareness that even the way in which the experience of disability is described in the media is decided by the non-disabled. The tension between the necessity of being cared for and the right to self-determination, and the rights of the carers; is rarely portrayed in the media.

Practicalities

There remains always the practical consideration of the real everyday needs of people with impairment. A person who cannot feed himself, is not mobile and who needs help with most intimate tasks has no option but to accept help with this from others. Many people with serious disabilities who do not work, find themselves living in residential units, care homes and the like and are thus segregated from mainstream society for much of their lives, often by the geographical location of their accommodation as much as by anything else. The level of care required by each individual will vary, from the as-needed support available in some sheltered housing schemes, to containment and medication and constant surveillance of people in secure special hospitals. The human needs and rights of all have to be recognised and respected, including some rights and needs that until recently have been placed on one side as too difficult to contemplate.

Physical Care

In the physical arena, there are many practical issues to be addressed. The intimate bodily care that all young children routinely receive changes on adolescence, when the non-impaired child seeks to take over its care from the parent and insists on privacy. A young impaired man with an erection may find his situation very embarrassing, especially with his mother, and this is likely to stimulate anger. His mother or carer may also inadvertently stimulate him, causing more anger and inappropriate arousal, while the menstruating young woman may feel distressed at the distaste felt by those changing her sanitary pads. Clearly there are difficulties here to be acknowledged.

Attitudes are changing, and staff are more aware now of the sexual and emotional needs and rights of the people they care for. They have had to confront some uncomfortable issues to do with their own attitudes, beliefs and perceptions. In a sense they have become pioneers in this field, as mainstream society is still resistant to changes regarding disabled people in terms of general inclusion. Regarding sexuality, there is still anxiety and conflict around this subject, but also a growing realisation that these changes are with us to stay. In part this new awareness is the result of the new way of understanding disability discussed above, not as a medical model, but as a social one.

Rights

No-one has an automatic right to a sexual relationship with another person, but they have the right to pursue the possibilities of one if they wish, as long as the other party is in agreement. They also have the right to privacy for solo sexual activity, as well as other things we all take for granted. There exists however, a small category of people disabled by mental illness or personality disorder who are sexually devious and predatory, and who for their own and others’ safety do not have the same rights. In these situations the rights of others not to be molested or involved takes precedence.

These rights are enshrined in law, and on top of this layer of statutory legislation, there is also a professional set of standards that aims to protect clients from exploitation by their carers and families. This set of standards upholds the rights of clients to protection and in some cases may be a more compelling right than their right to sexual freedom. We need to adhere closely to these standards, including our professional duty of care for the client, while questioning our own value judgements and assumptions. This is a difficult task. Most of us who are at present not experiencing a disability will develop health and mobility problems if we live long enough, and many of us, especially if female, will end up caring for another. Our best hope is that those caring for us will pay attention to our needs and wishes, providing they are not too destructive, and will give us room to be ourselves, without patronising us; enabling us to maintain the relationships we have and to form new ones. We should strive for no less for our clients.

Changes in the Sexual Climate

Times have changed. The sexual mores of twenty or thirty years ago are now no more. Consider the changes: we now have access to pornography, internet sex lines, telephone sex lines, sexual activity disguised as massage parlours, escort agencies, and the like. Sexual words are heard on radio and television and programme after programme is devoted to sexuality in all its manifestations. We can advertise for sexual partners; we can hire sexually explicit videos, we can visit sex shops. These are rights and liberties that everyone has. Couples live together without getting married, homosexuality is more and more accepted, and transgendered people have more of a place in our society than before. This is not to say that prejudice and legal anomalies do not exist, only that things have changed and are continuing to change. All of this has an impact on the aware disabled person.

When we consider the needs of people with impairments and those caring for them, we can see that the social and the medical models may be in opposition at times, as staff unwittingly impose their own moral values on what they consider is best for their client, rather than their clients becoming enabled to decide for themselves. There are therefore two factors that we need to separate in this whole debate: the rights of clients as enshrined in European and UK law, and they and their carers’ judgements and beliefs. We may not like the existence of telephone sex lines, but we all have the legal right to use them, as long as we can pay for the call. I have strong reservations about prostitution and other forms of sexual exploitation, but whatever my reservations it is the law that states the rights of the individual and dictates how sanctions will be applied.

No longer are we able to control totally the environment in which society’s more vulnerable members are cared for; they now have a say in that care and their needs within the system. This has in the past caused major heartache for many parents who have struggled to let go of their dependent offspring and who have found it difficult to entrust the care of their son or daughter to another. Yet the overwhelming majority of young adults leave home and adapt to their new independence. It is hard for a child with cerebral palsy, a learning disability or spina bifida, to develop the skills of independent or near independent living, but thousands of young adults out there in the community show it can be done, where the Social Model has been applied. They are frequently less fearful than their parents about leaving home. The new Human Rights legislation enshrines the rights of the individual, no matter what their impairment, to lead a life that allows for the maximum potential of that person to be achieved. It adds a new dimension to the Social Model and provides a legal impetus for change. There is an analogy with feminist movements, which have moved away from the notion of women as victims to seeing women as active participants in processes that objectify and dominate them and towards trying to alter this.

Risks

There are risks to be run by individuals who try to challenge Society’s conventions, and organisations managing the care of individuals are naturally anxious about their responsibility in law where the individual puts him/herself at risk. Hunt, writing of risk and responsibility, states that we live in a current climate which denies responsibility and criticises the “responses to risks in which individuals refuse to accept responsibility for tackling risks resulting from their own choices and transfer responsibility and blame onto others.” Fear of litigation is a powerful inhibitor of freedom. This and other issues will be discussed in the chapters that follow.

This book aims to address some of these tangled legal and professional dilemmas; while also attempting to look beneath the care framework at the effects of impairment and dependence on the sexuality of disabled individuals. Part of this process is to examine the impact of impairment on the sexual and emotional development of human beings, and their sexual conditioning, so that we may gain a holistic understanding of them, and ourselves, as people.

The cases I have cited in the book are all real people, and real situations, but any identifying detail has been changed. I have included some information too from people who gave me permission to use their experiences, and I owe them my thanks.