"Managing" sexuality and "acting out behaviour" in people with intellectual disabilities: Ethical considerations

INTRODUCTION

When I first stood in front of an audience like this 30 years ago, I was barely into my 20s, had no idea of where I stood with my own sexuality (even though I thought I did), had very little sexual experience, and could not possibly have foreseen the challenges that raising children with or without disability or chronic illness would introduce into my life. Yet I was passionate about working with children and young people who had severe intellectual disabilities and, coming from an activist family, I was determined that all was not right in a world which at best treated people with intellectual disabilities as “eternal children,” or at worst, locked them up in institutions and forgot about them.  When I started working with Dorothy Cornelius in Westbury, Coronationville and Eldorado Park some years later, another world opened to me. Here people with disabilities were deeply affected by poverty, racism and the exclusion from both white privilege and black activism. They were, on the whole, however, not regarded by their families or their community as “eternal children’, nor were they put into institutions and forgotten. They were simply part of the fabric of the life of a marginalized society.

Since then I have grown up. I moved from Eldorado Park to the turbulent townships of Katlehong and Thokoza and now having the title of “clinical psychologist” to add in brackets behind my name, I founded and for many years ran a community mental health service based at Natalspruit Hospital, with a special focus on youth at risk, gender violence and HIV/AIDS.  Children and adults with intellectual disabilities were part of the programmes we implemented around these core issues. A few were assessed and formally labeled, and less than a handful of the most profoundly disabled or severely neglected could be placed in residential care. The vast majority somehow survived in the community, for better or for worse. They fell in love, had sex, fell pregnant, got infected with HIV/AIDS, were abused, abandoned, picked themselves up again, got drunk, fought with their mothers, came for counselling, wept, raged and somehow carried on surviving.

I have grown up in other ways too. I discovered my own sexuality and the complex emotional maze of intimacy. I loved and was loved, I experienced closeness and rejection, the seemingly endless pain of the broken heart and its gradual healing, and the re-discovery of the joy and the cycle of togetherness and separation that comes with a committed relationship. Equally important, I had children. Being adopted my children were different- in colour, in background, and in the challenges they had in growing up in a society that despite political liberation remains highly polarized. The youngest child introduced us all to the very personal realities of living with AIDS. As a family we constantly have to negotiate our differentness across a range of economic and cultural boundaries.

Perhaps it is the life long experience of navigating different-ness and all the social and emotional vulnerabilities that come with it, that continues to bring me back to where I stood many years ago as a young white woman with little experience but a passion to speak for those whose voices had been locked up, forgotten, or simply ignored. The human right issues related to sexuality and disability simply do not seem to go away.

This presentation does not attempt to provide any answers, but rather seeks to raise questions which we as responsible service providers, carers and activists need to constantly engage with. We are dealing with issues related to our very human-ness, our inherent need for closeness, our longing for belonging. When we confront the sexual behavior and expression of disabled people in our care, we have to in the final instance confront  our selves- our identities, our relationships, our sexualities, and our assumptions about other-ness and the social contexts that shape them.

MANAGEMENT,  ACTING OUT AND THE  PRESUMPTION OF INNOCENCE

The first step we may need to take is to consider the assumptions that underlie the very language we use when referring to the sexual behavior of people with intellectual disabilities.

The title of this presentation refers to “management” of sexual behavior, with “acting out” seemingly referring to the assumption that much sexual behavior among people with disabilities represents in fact some sort of abnormality.

As the mother of three growing daughters, I know and understand the reference of “acting out”. The oldest, now a young woman, returns night-long “clubbing” when a relationship as broken down and she is desperate to find a replacement. It is a behavior which I, as a mother, consider “acting out”. The 16 year old’s energies go into finding out who she is as a sexual being, and the fact that it does not go into her school work, perturbs me so much that I could also label her behavior as “acting out”. My ten year old daughter who lives with HIV has read in the popular youth magazines that lie around any NGO that HIV+ women should not have babies. Now she is obsessed about having a baby, which leads to all kinds of other “acting out” behavior.

“Acting out” behavior needs to be “managed”- which seems to imply that we as responsible adults have to be in charge and in control of our children, adult or otherwise, at all times. It assumes that such control is possible and that if a person in our care continues to “act out” we have somehow failed and need to be held accountable. The question I need to ask myself as a responsible adult, is to what extent I am always in control of my own behavior? What mistakes have I made in my life? What learning has taken place as a result of my mistakes. What example am I to the young or disabled people in my care? If my daughter, or the disabled resident in my care falls pregnant or gets infected with HIV, have I failed? When does behavior become a shared responsibility?  Does the accountability for behavior always lie with the individual, in this case the carer who has failed to “manage”, or do we have a collective responsibility- one that is shared between the carer and the person she cares for, between mother and child, between family or care centre and  society at large?

Mothers have long been the scapegoats for the failure of their children to conform to socially prescribed standards of behavior. So have care workers at all levels in residential care centres. There is another assumption that comes into play, especially in middle-class environments. This is the assumption of the sexual innocence of children, and of adults with intellectual disabilities, who continue to be regarded as “eternal children”.   We assume that children and adults with intellectual disabilities have no sexual feelings and therefore will not display any sexual behavior unless they are somehow misled by into such behavior by ignorant or malicious carers.

The fact is that all human beings, regardless of age or severity of disability are sexual beings. Most children will engage in some form of sexual behavior while they are still being regarded as sexually innocent, and so will most people with intellectual disabilities. So-called “able” adults tend to project their understanding of mature adult sexuality on children and on people at various levels of intellectual functioning, and maybe this is where we tend to make our most serious mistakes. To a young child, exploring the genitals of a peer of the opposite sex is a matter of curiosity rather than mature adult sexual interest. An abused child will “act out” sexually to try to understand what has happened to her and master the complex feelings aroused by forced sexual act, rather than seek sexual fulfillment in the way we understand it.  While such behavior is no doubt sexual it does not have the same meaning for the child as it has for the adult. For people with intellectual disabilities, as for many of us, sexual behavior may have a range of meanings too. They may seek sexual fulfillment in an intimate relationship like their able brothers and sisters. Or they may look for the social acknowledgement and affirmation that comes from “being married”. They may want to understand and master feelings for which they have no words. Or they may simply want to explore their bodies and the different sensations it contains.

Our social and cultural context profoundly influences how we perceive our own sexuality and that of others, and none of us, no matter how young or disabled, are immune to this. In modern society all of us are exposed to multiple and often contradictory messages about sexuality and sexual behavior. People with intellectual disabilities absorb these messages as much as their able peers. How they interpret these messages and counter their negative impact depends not only on the level of cognitive development but also on the ability of the environment (not only mothers and carers) to critically and appropriately mediate them.

As parents and carers we can safely assume that there is no sexual innocence in the way we would like to think about it. What sexual behavior means needs to be understood in terms of the individual’s developmental history and needs, in terms of the social and cultural context in which he/she continues to grow and learn, and in terms of the collective efforts made to support and encourage healthy and developmentally appropriate ways of expressing sexuality.

SOCIAL CLASS, INTELLECTUAL DISABILITY AND  SEXUAL BEHAVIOUR

Over the years I have become more and more acutely aware of the role played by social class and socio-economic status in shaping our personal, and collective responses to different-ness.  Because power and influence inevitably lies with the more affluent sectors of society, our professional paradigms of conceptualization are much more likely to be drawn from the experiences of these sectors than from the realities of the poor and economically disadvantaged.

The value of human life as defined by the dominant ideology lies in its potential for economic productivity. We raise our children to become economically productive members of the middle class, and as such we teach them to work towards ideals such as independence, individualism, self-actualization and personal autonomy. People who are not able to be economically productive embody some definition or other of deviance, which need to be eliminated or at least controlled through the various ideological  mechanisms which have evolved over time.

The disability sector has for many years been dominated by the Western medical approach to deviance.. Disability is seen as something we need to be at dis-ease with, something that is not normal, not acceptable to our idea of what the world should be like, and therefore something that, if it cannot be cured, must at least be managed within the realm of medical science. The dis-abled person is a burden to the family, and we generally agree that it is critical to “diagnose” as early as possible in order to intervene and facilitate as much normality as we can. Children with disabilities are sent for various therapy, treatment, stimulation and education programmes from early on and a whole professional culture has developed around their “special” needs. These programmes are generally costly and add to the sense of being burdened by a child with special needs. As the child becomes an adult, the cost increases because, not having succeeded in becoming an economically independent adult, he needs to be placed in residential care when his ageing parents are no longer able to look after him.

In this paradigm the adult person with an intellectual disability is regarded as an “eternal  child” because somehow providing ongoing care for a child is more acceptable than confronting the reality of an economically un-productive adult. The reality of a developing sexuality needs to be suppressed because its acknowledgement makes us uncomfortably aware of the disjuncture between what the real person we have in front of us, and the ideal of the independent, autonomous adult we have been taught to value above all. Moreover, the sexuality of the disabled person brings us face to face with the risks we see associated with his reproductive capacity- another handicapped child, another burden to the economy.

Poor communities too are profoundly influenced by the ideology of the economically dominant classes. However, poverty shapes it own realities and therefore also its own responses to different-ness. In poor communities, the ideology of individualism cannot hold water. The young adult who cannot get a job remains dependent on his parents and extended family and his search for personal autonomy needs to find different forms. The collective is often his only means of survival, and this collective often includes people with disabilities. In South Africa, we have the unique situation that children and adults with disabilities often become breadwinners in their families, because through care dependency or disability grants they are the only ones who have access to any form of income.

In poor communities children with intellectual disabilities, especially when these are not overtly visible, are often not diagnosed until they are well into their school going years, and many are not diagnosed at all. Although this makes them vulnerable in many ways, it does protect them from the stigmatization associated with labeling, and allows them to lead relatively normal lives, as defined by their immediate social context. Often the only difference they and their families perceive and acknowledge between them and their peers is the fact that they are “slow” or not able to learn at school. They are expected to engage in sexual activity as are their able peers, and unless severely and visibly disabled, they are more often than not also expected to produce children.

The apartheid system entrenched these divergent social constructions of disability by reserving access to early intervention, treatment, and education programmes to whites only. As these discriminatory practices are gradually being broken down, more black disabled children are beginning to access the services and the issues related to class as opposed to race are becoming increasingly evident.

DISABILITY AND SEXUALITY IN A DEVELOPMENTAL FRAMEWORK:  SOME OF OUR DILEMMAS

Most of us in this room, I am sure, have come to embrace a developmental approach to both sexuality and disability. Most of us will acknowledge that adults with intellectual disabilities firstly have the need for companionship, belonging and intimacy (including sexual intimacy); and secondly have the right to have these needs met in a socially and developmentally appropriate manner. However, this acknowledgement in itself confronts us with a number of ethical dilemmas- dilemmas which arise in part out of our own struggles with the other-ness of the other when it involves sexuality (and this is evident not only in relation to people with disabilities, but also to those who choose same sex partners and those who live with HIV); and in part out of clashes of expectations resulting from the different class- and culture based perspectives on sexuality and disability.

1.   Rights versus vulnerabilities

While we acknowledge the right of people with disabilities to express their sexuality, we are also acutely aware of their vulnerability to abuse.

This awareness of vulnerability has led many middle class parents whose adult children are in residential care settings to expect care staff to prevent any opportunities of any kind of sexual encounter arising in the first place. The assumption held by these parents is that their adult children are sexually “innocent” and need to be protected at all costs. When it emerges that a resident has been involved in some kind of sexual activity with another resident, it almost inevitably results in an intense emotional exchange between family members and care givers.

It is perhaps ironic that most instances of the sexual abuse that I have had to deal with involved able adults who are in some position of power over the disabled person- workshop managers, care staff, security guards and the like.

Disabled adults living in the community are equally vulnerable. Serial abusers may seek them out, because lacking the cognitive skills to give credible evidence in court, they make easy victims, especially if they are already neglected within the family system or have nobody to who can help them interpret clues and negotiate unwanted sexual advances.

Generally intellectually disabled people living in poor communities are expected to have sexual relationships and are much more street-wise than their disabled peers who have grown up and been protected in special facilities all of their lives. When for some reason or other they do make it into a protective workshop or residential facility, their sexual experience can pose a threat to care staff who have been primed at to at all costs protect their more privileged clients from any kind of sexual encounters. I believe that this is one of reasons why residential centres are reluctant to take even consider referrals from poor communities. Failure to address this issue in all its complex ramifications in the end threatens to further entrench racial and class prejudice.

Issues of consent, I believe, are much more than a matter of legal definition. They involve the complex interplay of cognitive ability, emotional intelligence, social and familial modeling and support, and the way the economic and cultural structuring of power relationships between individuals, both within the micro-context of the family or care centre, and in the broader society.

2.   The reality of HIV/AIDS 

In poor communities HIV/AIDS is a reality. It is still associated with stigma, but being so common place it is rarely a surprise. HIV/AIDS has moved into many poverty-stricken homes and become part of the staple diet of life, as has death and the endless stream of social and economic demands it comes with.

In more affluent homes, on the other hand, HIV/AIDS is associated with dread and horror. It is a disease marked by the assumptions of poverty, dirtiness, promiscuity, and uncontrolled “acting out”.

When special schools, workshops and residential centres still served primarily the privileged white community, it was easy to ignore the threat of HIV/AIDS. The adults in these facilities were in any way not expected to be sexually active and the function of staff was to protect them from sexual knowledge and experience. Moreover the belief persisted that HIV/AIDS is primarily a disease of population groups whose lives were no threat to the reality of those holding the strings of economic and political power.

This situation has changed over time, as families and professionals like myself, living or working in the townships on the edge of mainstream society started claiming the right of their children to special education and care. Again we have young adults who have not been prevented from expressing their sexuality, or protected from various forms of sexual exploitation invading the realm of those who presumed to be sexually innocent.  The fact that most of these young adults are black, street wise, and possibly HIV positive introduces a new melting pot of prejudices.

If we are to take the right to sexual expression seriously we need to face, as parents, and as carers, the risk and the reality of HIV/AIDS. No matter how well we prepare our children, able or disabled, for the responsibilities associated with an active sexual life, no matter how much we try to protect them from unwanted advances and abuse, no matter how carefully we try to monitor their relationships and behavior, in the final instance we cannot presume to have the right to invade a person’s most private and intimate moments. In the final instance, we have to allow them to make their choices, and stand by them if they (or we) have made a mistake. HIV/AIDS is a possibility we all need to be able to live with.

3.   The value of life: who decides who may and who may not be born

Although most of us as carers for people with intellectual disabilities are deeply committed not only to their care and protection, but also to their development as human beings, it is unlikely that a significant number of carers in this room would advocate for the reproductive rights of adults with intellectual disabilities. The risks we argue are too big and cannot be controlled. Mostly we refer to the risks of a disabled person producing yet another disabled child, another potential burden to family and community, another unproductive member of society.

And even if a child is born without a detectable disability- who will take care of her? Where are the resources that intellectually disabled adults will need to support them in managing the complex tasks of parenthood? Where will the money come from to feed, house, educate and protect a family which is not able to make any contribution to the economy? 

As valid as these questions are in our current reality, there are deeper issues which we need to confront. Who decides about the value of life? Who determines the worthiness of a life?  What do such decisions about the (un)worthiness of life do to our humanity?

I have a child who lives with AIDS and who in all likelihood will not have a long and productive life. She is already an economic burden to our family and to society- the ARVs, the repeated hospitalizations, the special educational needs which require expensive additional programmes. The burden goes beyond the physical care. An entire family suffers under the stress of having a child whose needs seem to push aside all else.

Would we have it any other way? Despite the anger, the resentment, the sibling rivalry, the behavior problems, the huge drain on our material and emotional resources, not one member of our family would in the end have it any other way. Because her life has an intrinsic value, because this value enriches ours in ways we could never have anticipated, because she brings into our world an appreciation of each day as it comes and a love which we value above all else.

Parents and brothers and sisters of disabled children will know what I am talking about. What the world loses in economic productivity it gains in humanity. This is not to deny the very real suffering that disabilities, illness, disease and death bring into our lives. In fact we have a personal and collective responsibility to reduce suffering as much as possible so that more people can live life to the full. The question that remains is how we define suffering and what we attribute as its causes.

Poverty, deprivation, neglect, violence, forced displacement, and the systemic and widespread abuse of power are, in my view, the real causes of suffering we need to address. The tragedy is not that my child is HIV+ or that yours is disabled. The tragedy is that the vast majority of our children, able or disabled, ill or healthy, are growing up in extreme poverty, with no access to even the most basic resources and services they need to develop their gifts and talents, their unique contributions to our world.

If we commit our energies to remedying the gross social and economic injustices we see all around us, we will come much closer to embracing not only the humanity of the intellectually disabled (or gay, or foreign, or HIV+) person, but also our own.

IN CONCLUSION

As promised I have raised more questions and answered none.  With getting older I have come to realize that there are no answers to the deep questions of life,  and that our quest for solutions often leads us only to further problems. In fact it seems to me that the value of professional discourses such as this lies not in the recipes for the management or control of life’s many mysteries but in the conversations we have in the here and now; in the reflections they give rise to within us; and in the way they encourage us to constantly re-consider and re-humanize our relationships with the people who have been entrusted into our care. As much as I would once and for all like to finish with the issue of sexuality and disability, we all need to realize and accept that human sexuality always has been and always will be associated with intense emotions and powerful taboos, especially in relation to the more visible forms of “other-ness”. So, I suppose the best I can hope for is that somebody else will take over the baton and run the race that has no finishing line.

Johanna Kistner

Sophiatown Community Psychological Services

SAASSMH,  7 September 2010

Shame

On Friday we had to send a young woman with her two year old son to a home for abused women and children. At  6pm this was not an easy task, but this was an emergency which could not “wait until Monday”. The threat- two or three police officers from the Jeppe police station to whom she had turned for protection after weeks of being victimized by a gangster, who robbed her of her business, her possessions, and her physical safety.

This young woman has no hope left. “There is no God for me”, she told fellow refugee women who meet for weekly counselling sessions at our centre, just a few days before she called us in a state of utter despair late on Friday afternoon.  She wants to die, to join her parents, and her little brother, who after being killed in a massacre, at least have to suffer no more.

The shame belongs to all of us. Ten or more years ago this young woman had a loving family and a solid home in Burundi. She dreamt of being a lawyer, of seeking justice in a land racked by ethnic hatred and years of violent conflict. She was sent to boarding school to get a proper education. One day, she returned to school, after a few days of being ill at home, to find the entire school community wiped out. Her friends and teachers killed, the building burnt down. She was sent to another school, and coming home for the holidays at the end of a term, she stumbled not into the arms of her family, but onto the bodies of her mother, father and younger brother.  She escaped with her grandmother, and roamed the countryside with her for some time before finding sanctuary in a community where her grandmother was well known. The community was able to offer protection to the grandmother but the young woman, because of her ethnic background, was a security risk, and so she was on the run again. She met a woman who suggested that she find her way to South Africa, where she promised her brother would take care of her.

In South Africa the young woman found the brother of the woman, who insisted on making her his “wife” in return for protection. She fell pregnant, was beaten and forced to sleep on the floor while the man invited other women into his bed. Just after the birth of their son, the man disappeared. A kind South African family offered her a draughty garage in a derelict part of the inner city. Although she did not have to pay rent, the search for food, nappies and clothing for the baby was a relentless one and that is how she came to us. We provided what material help we could and the young woman was helped through an intense grieving process. Gradually she began to pick up the pieces of her life. She found out by chance that an aunt, whom she had long presumed dead, had found her way to Canada and was able to make contact with one of the last two surviving members of her family.

 But then the South African family sold the house they were living in and now the young woman was forced to pay rent for the room she was living in. The aunt in Canada made many promises but kept none, and the young woman gave up any hope of any real family support. Then came the news that her grandmother had died some time ago. The young woman’s anguish was almost unbearable to witness. Once again though, she pulled herself up from the ashes of her life, for the sake of her baby son. The boy’s father returned, and with no money to pay the rent she was forced to take him back into her life. They rented a small room which they turned into a hair salon.  The young woman worked from morning till night washing, braiding, and styling the hair of poor women with little or no money to pay for the hair styles which would restore some dignity and beauty into the drabness of their everyday struggle for survival.

A few weeks ago a gangster forced the young woman and her “husband” out of the “salon” they were renting and when they protested he beat them up and threw all their belongings onto the street. In the ensuing chaos the little boy was lost.  Distraught they opened a case at the Jeppe police station. They were not given a case number. When our social worker intervened a case number was finally registered, but we were told that there would be no arrest for assault.  When the social worker persisted in demanding police intervention, a case of housebreaking was opened.  A police officer who went to the scene threatened the young woman with deportation. The child was found late at night with a local woman who had taken pity on him.

A week later, last Friday, the boy’s father was arrested. No charge was put to him, but police officers at Jeppe Police Station, where he is being held, told him that he would be released immediately if he dropped all charges against the gangster. He refused and so he remains in custody.  When the police officers could not get anywhere with him, they phoned the young woman and asked to meet with her.  She agreed to come to the police station but they refused, saying they wanted to meet her privately. Suspecting that they wanted to intimidate and beat her into dropping the charges against the gangster she panicked. Weeping in absolute despair she called us. She had nowhere to hide. God had abandoned her- once again. Thanks to the kindness of a local shelter we could at least get her to safety for the weekend.

I sat in church this morning and wondered about God. Hymns and prayers washed over me. They meant nothing to me, if they could not be made to hold meaning for a young woman and a little boy who have lost all hope. I replaced the words with her exhausted face, the readings with the story of her life, the prayers with the voice of a child whose solid little body as yet resists the infusion of despair.

The shame that will forever cling to these police officers at Jeppe police station is also ours. It is the shame of a history that has turned and continues to turn human beings against each other in the greedy pursuit of self-interest. And like the young woman who will  face me and the shame of my nation again tomorrow morning, I will continue to question God, until  sometime somewhere together we re-discover a glimmer of hope.

Johanna Kistner

Sophiatown Community Psychological Services

"Dan"