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"Sterlilisation and Sexuality in the Mentally Handicapped
published in : European Psychiatry, 1998, 13 (Supp. 3), 113-119.
Résumé : Cet article vise à analyser le contexte historique et psychosocial dans lequel des stérilisations de personnes handicapées mentales sont pratiquées en France et, à mettre en évidence les liens entre la sexualité de ces personnes et les stérilisations qui sont pratiquées sur elles. On fait l'hypothèse que la stérilisation des personnes handicapées mentales est un des moyens du contrôle de l'activité sexuelle de ces personnes. Les processus et les situations qui conduisent, dans certains cas, à la stérilisation des personnes handicapées mentales dans des conditions où l'obtention de leur consentement est considéré comme problématique sont décrits et discutés.
Summary : This article analyses the historical and psychosocial background of the sterilisation of mentally handicapped individuals in France and investigates the relationship between their sexuality and their sterilisation. Sterilisation of the mentally handicapped has been used as a method for controlling their sexual activity. The processes and situations leading to the sterilisation of the mentally handicapped are described and discussed.
Key-words : sexuality, mental retardation, involuntary sterilisation
1 - Involuntary STERILISATION : BETWEEN PUNISHMENT AND EUGENICS
The involuntary sterilisation of the mentally handicapped and other individuals regarded as social deviants (psychopaths, sex offenders) is directly linked to the practice of castration. There is evidence for the involuntary sterilisation of men by the means of castration and women through oophorectomy as far back as the 16th century. Erlich (1991) and Reilly (1991) remind us that in 1894, Pilcher, the principal of the Winfield State Training School, a sanatorium in Kansas housing 400 mentally handicapped individuals, had a number of residents castrated because they masturbated or were considered as hyper-aggressive. Three hundred adolescents were thus "freed from their antisocial tendencies" between 1923 and 1950 (Erlich 1991, p.75). In France, in 1900, H. Thulié published his work "Le dressage des jeunes dégénérés, ou orthophrénopédie" [The Training of degenerate youths or paediatric orthopsychiatry]. He wrote that "the degenerate individual is a social danger, both immediately and in the future, in that if such a person reproduces the child may also be degenerate, or valueless, and therefore a new dangerous individual. Sexual relationships involving the degenerate individual are likely to result in monsters like himself because such individuals are incapable foresight". He advocated "castration of boys and oophrectomy for girls as the best method of control and that the children need not be pitied because at that age they knew nothing about sex and could therefore have no regrets. He regretted that it was impossible, for moral reasons, to carry out these beneficial interventions" (quoted in Perron 1994, p.30). According to Eisenring, castration was used at the start of this century to "desexualise" the mentally handicapped, to deny these individuals their sexuality : "If mentally handicapped individuals showed any signs of sexual development, they were treated as monsters. The aim was to protect people from the criminal acts that might be committed by the mentally handicapped and to prevent the production of excessive numbers of retarded individuals who would have to be cared for by society" (Eisenring 1975, p. 334). These measures were a form of "treatment" for forms of sexual behaviour regarded as inappropriate and were designed to prevent procreation. The idea that antisocial behaviour, degeneracy, immorality and crime were in some way hereditary emerged towards the end of the 19th century. The question of the social costs of treating degeneracy, an economic argument, also arose at this time in the United States (Reilly 1991). However, castration seemed to be both too brutal and too inefficient a method for reducing the fecundity of the "weak of spirit". The development of vasectomy in 1897 by Ochsner for treating hypertrophy of the prostate, provided an alternative technique making possible the sterilisation of the mentally handicapped.
From the end of the 19th century, individuals were sterilised without their consent in various American states. These acts were sanctioned by the authorities on the basis of eugenics. Criminals, the mentally ill and sexual delinquents were all subject to this treatment. From 1907 onwards, states such as Indiana produced laws sanctioning the sterilisation of insane individuals and criminals. At the same time as this policy was implemented, no legal provision had been made for sterilisation with consent. Kevlès reports that these enforced operations were carried out on the mentally ill, lunatics confined to asylums and drug addicts. The laws also provided for the sterilisation of anyone convicted twice for sexual offences, three times for another crime or once for involvement in the white slave trade (Kevlès 1985). These policies continued to develop at the start of the 20th century, particularly in Germany (Grossmann 1995, Massin 1996), Scandinavia, in the canton of Vaud (Ehrenstom 1990) and in Alberta, Canada. Later in Germany such methods were used for the extermination of the mentally ill and for the "final solution to the Jewish question".
In 1950, Sutter studied the eugenic sterilisation that had taken place in the United States and Sweden. He found that "very few of the cases involved individuals with hereditary diseases. Weakness of spirit, for example, is not a disease and cases with clearly determined genetic bases were the exception rather than the rule. Why use sterilisation in these cases? It seems to be a coercive measure aimed at preventing the transmission of any unidentified, hypothetical gene that might exist; a sort of stab in the dark all too often used against individuals condemned to confinement or incapable of having children. Under the guise of eugenics, the aim was to free society from the costs of maintaining asylums and specialised hospitals, although each generation inevitably contributes its own share of biological flaws." (Sutter 1950, p.229).
This brief summary of the history of involuntary sterilisation shows that it has been used for two purposes. The first as a coercive measure, a social response to certain forms of sexual expression or antisocial behaviour and the second as a preventive measure (eugenics) aimed at reducing or abolishing antisocial behaviour and at preventing these individuals from producing children like themselves. The eugenic use of sterilisation was involved in a social organisation able to define the criteria determining which individuals should be sterilised. Such social organisations were found in both totalitarian and democratic regimes. It is unlikely that sterilisation was an effective eugenic method because very few mental illnesses have a clear genetic basis. France, with its policy of encouraging an increase in the birth rate, never implemented eugenic policies involving sterilisation without consent. It is thus difficult to show that the sterilisation of mentally handicapped individuals without their consent was an element of organised eugenics projects. However, as discussed above, the idea that all "degenerates" should be sterilised was voiced by some in France, so there may have been eugenic tendencies. We thus need to investigate the reasons for the sterilisation of the mentally handicapped in France and the relationships between these reasons and the status and sexual activity of this population.
2 - STERILISATION IN FRANCE
In 1994, 7.1% of French women between the ages of 20 and 49 had been sterilised. A higher proportion of the older women in this age group were sterilised: 12.7% of women aged 40 to 44; and 21.7% of women aged between 45 and 49. Around thirty thousand women and several hundred men are sterilised each year (Leridon and Toulemon 1997). Voluntary sterilisation as a form of contraception is not authorised but nevertheless occurs. Sterilisation without informing or obtaining consent from the person concerned is regarded as a form of mutilation in criminal law and its practitioner is liable to punishment. Sterilisation is only authorised on therapeutic grounds. In all cases, prior consent must be obtained from the patient before the operation. The 1995 code of medical ethics (Art. 41) confirms that the patient must be informed and prior consent obtained for any intervention of this type. Obtaining informed consent from mentally handicapped or mentally ill individuals is also problematic in situations such as biomedical research and donating organs, where medical surgical interventions are required (Giami, Lavigne 1993).
In 1996, the National Ethical Consultative Committee (CCNE) published an Avis and a report on contraception for the mentally handicapped (CCNE, 1996, n° 49) and a report on sterilisation as a means of permanent contraception (CCNE, 1996, n°50). These two documents place the problem of sterilisation in the context of the development of contraceptive methods. These documents originated from an ethics committee and bioethics, human rights and the equality of citizens have always been associated in France. This raises the question of why the CCNE produced two separate reports, one on sterilisation in general and the other involving sterilisation as a means of contraception. This duality emphasises the particular status of the mentally handicapped by not integrating the issue of their sterilisation into a discussion of sterilisation in general. These two texts provoked conflicting reactions in the public sphere. Some commentators accused the CCNE of making access to sterilisation easier for mentally handicapped women by proposing a legal framework within which such interventions can take place. Others focused on the fact that the Avis of the CCNE aim to limit these operations by imposing conditions which make sterilisation of the mentally handicapped difficult if not impossible.
The CCNE included the discussion of the sterilisation of the mentally handicapped in the larger debate concerning contraception. The medical prescription of contraception for mentally handicapped women also requires the consent of all concerned and is dealt with on a case by case basis. This is often forgotten. The apparently innocuous nature of contraception and its reversibility, maintaining the ability to procreate in the long term, leads many parents and directors of institutions to impose contraception on mentally handicapped women with no formal proceedings, to protect themselves from the scandal caused by pregnancies. This is an important aspect of the Avis and report number 49, which questions current attitudes to contraception and its use by mentally handicapped women, but which has passed largely unnoticed as many commentators only consider sterilisation and do not discuss access to reversible forms of contraception and abortion. These reactions show that the question of the consent of the mentally handicapped for interventions, including minor and non-mutilating interventions, contributing to the treatment of these individuals is not systematically considered.
Thus, the practice of sterilisation in France is marked by major contradictions. Voluntary sterilisation for contraception is possible though it is not legal, whereas, in the absence of eugenic legislation, individuals from whom it is difficult to obtain consent are sterilised at the request of third parties, mostly their families. The absence of clear legislation concerning sterilisation leads to an uncontrolled situation, in which requests for sterilisation of the mentally handicapped are expressed. We are faced to the opposite situation to that prevailing where eugenic policies are applied. In France today, the sterilisation of mentally handicapped individuals is treated as a private affair.
3 - THE STATUS OF THE MENTALLY HANDICAPPED
The term "mentally handicapped" is ill-defined and covers individuals with various deficiencies. Thus, the "mentally handicapped" cannot be regarded as a clinically homogenous group. Handicapped individuals are currently covered by the law of 1975. However, the term "handicapped individuals" is not explicitly defined in this text and the definition of the term has been left to specialist commissions, such as the C.D.E.S. and the C.O.T.O.R.E.P. (Giami, Korpès, Lavigne, Scelles 1996).
Use of the term "mentally handicapped" leads to the construction of an homogenous group. Lang remarked that the notion of handicap is tainted with concepts of infirmity and invalidation and implies an unchanging and definitive condition (Lang 1993). "Mental handicap" is also seen as "the most handicapping handicap" by all groups of the population whether or not in direct contact with handicapped people (Giami 1989, Perron 1994). In legal situations, mentally handicapped individuals are also treated as a homogeneous group and may be made wards (of court or a guardian) or labelled as "incapable". Their status is based primarily on the principle of protection and assistance for people regarded as vulnerable. Some aspects of the sexuality of the mentally handicapped are taken into account by these laws. The rules governing marriage, which in some cases requires the permission of the guardian (civil law), are part of a strategy to limit the fecundity of these individuals. The protection against sexual abuse perpetrated by educators or other people (criminal law) and the respect for the integrity of the body and the necessity for consent, particularly for sterilisation operations, regarded as "mutilations", (criminal and civil law) are designed to protect against abuse by defining the penalties for those who commit such abuses.
Incapable adults are not permitted to exercise responsibility in various major areas of their lives, particularly in the extensive medical care that they require (Luttrell 1997). They are not allowed to manage their own finances and they can only marry with the consent of their guardians. They are generally deprived of their civic, political and civil rights. Thus, the term "mentally handicapped" is more legal and administrative than medical, raising questions about the psychological justifications for the sterilisation of these individuals.
4 - THE SEXUALITY OF THE MENTALLY HANDICAPPED
Socially, the sexuality of the mentally handicapped is seen as a "problem" by their friends and families and by public opinion, as expressed in the media. Above all, the sexual activity of these individuals disturbs the people around them, especially their families and the staff of the institutions where they are treated. Positive sex education is rare and sexual problems are tackled as "crises", "accidents" and "setbacks". Heterosexual relationships between consenting adults are often forbidden within institutions. This situation increases exposure of mentally handicapped individuals to sex-related risks. In contrast, educational teams are much more vigilant with respect to the control of procreation (contraception or sterilisation), and the prevention of HIV transmission and sexual violence.
The social construction of the sexuality of the mentally handicapped as a "problem" has a long history. Michel Foucault and Thomas Szasz analysed the relationships that were thought in the 18th century to exist between madness and sexuality. In 1974, Michel Foucault addressed the issue of "abnormals". He observed that the large confused and ill-defined group of "abnormals" (a term previously used for mentally handicapped individuals) is made up of three figures: the human monster seen as being a freak of nature and a breach of the law; the individual to be corrected, used to justify the progressive establishment of institutions for rehabilitation; and the onanist regarded as sexually infantile. This view implicates parents as having some responsibility and even guilt in the "abuse" of onanists, due to negligence, a lack of surveillance and a lack of interest in their children (Foucault 1994). In his work, "The Manufacture of Madness", Th. Szasz showed how doctors saw masturbation as the principal cause of madness and an array of other psychosomatic problems, and how all available educative measures were used to eradicate this evil (Szasz 1976).
More recently, Lang identified three epochs in his review of the development of ideas concerning the sexuality of the mentally handicapped. The first, from the middle of the 1950s to the middle of the 1960s, involved treating the sexuality of these individuals by considering the issue simply as genital function. This epoch was dominated by the ideology of control and interdiction aimed at suppressing the sexuality of the mentally handicapped. In the second epoch, beginning at the start of the 1970s, the sexuality of the mentally handicapped was addressed in terms of their overall psychological and motor-sensory development, and their emotional and sexual relationships were considered. The mentally handicapped were thenceforth considered to be sexual beings with the right to a sex life under certain conditions. The most recent epoch, beginning at the start of the 1980s, dealt with the sexuality of the mentally handicapped in terms of representations. Sex, including fantasies grounded in the libido, was considered as an interactive whole, in which it is confronted with the sexuality of the people close to the individual, their parents and teachers. In the conclusion of his article Lang emphasised the obstacles to the expression of sexuality and the difficulties faced by the caregivers and families in discussions about sex (Lang 1992).
These previous studies show:
(1) the appearance of a collection of representations which link "monstrosity" and "abnormality" to specific sexual characteristics.
(2) the functions of responsibility, surveillance and education delegated to families and special education teachers.
(3) the importance given to the fight against masturbation, a specific form of sexuality, by a general framework aimed at the eradication of madness. Masturbation was seen as both the cause and consequence of mental illness.
(4) the refusal and negation of genital expression.
In institutions treating mentally handicapped individuals, special education teachers and the family develop a system of representations of the sexuality of the mentally handicapped which attributes particular characteristics to the sexuality of these individuals. This system of representations is based on the notion that the mental deficiency of the individual is responsible for their particular form of sexual expression. The mentally handicapped are thus seen as driven by natural forces (Lavigne 1996), their sexuality viewed as uneducable and uncontrollable or non-existent.
In 1993, Giami, Humbert-Viveret and Laval identified two opposing types of representation. The teachers construct a form of sexuality which is seen as "savage" and incomplete as compared to the genital model. It is "savage" in that the teachers focus on the most visible and provocative elements of this sexuality: individual and collective masturbation, exhibitionist and voyeuristic practices, aggressive behaviour and homosexual practices. It is also "savage" in that these activities are portrayed as being irrepressible and uncontrollable and devoid of affective components. The boys, in particular, are often seen as being aggressive towards the girls, who they force to submit to their sexual demands. The girls are portrayed as being more "affectionate" than the boys and both boys and girls are seen as being incapable of forming stable long-term relationships.
Most teachers assert that young mentally handicapped adults are incapable of sexual relationships, but, at the same time, they carry out the surveillance required by the authorities to prevent such sexual relationships taking place in their institutions. They also regret that the mentally handicapped cannot achieve "normal" sexual relationships that they see as being balancing and socialising.
For the parents, the handicapped child represents, often unconsciously, the "eternal child" who will never grow up and who will always be dependent on them. They affirm that their child is not interested in sexuality and that neither they themselves, nor the educational teams, have noticed anything "abnormal". However, they do not rule out the possibility that mentally handicapped individuals other than their own "child" might express some form of sexuality.
For the parents, this "desexualised" child, even if he/she is in fact an adult, shows limitless affection both to his parents and to the other individuals in the institution with whom he may form very strong emotional attachments. This "affection" is described as "pure" and "non-sexual". Parents consider that the mentally handicapped have a "childlike" sexuality, a sort of "desexualised sexuality" based essentially on affection (Giami, Humbert-Viveret, Laval 1983).
Despite this opposition of ideas, there is a strong consensus between parents and teachers that mentally handicapped individuals should not be allowed to procreate. Educators are in favour of contraception being integrated into educational projects. The parents, when questioned on the subject, do not seem to recognise the possibility that their child might become a sexual adult, with the possibility, or risk, of procreation. The mentally handicapped person remains the "eternal child", for whom procreation is definitively prohibited. This concept is also common among health care professionals for whom the retarded person is an unique personality with the impulses, needs and physical strength of an adult, the representations and judgement of a child and the affection of one age group or the other. Unlike short-term contraception, which keeps open the possibility of procreation in both real and symbolic terms, sterilisation eliminates this possibility. The results of our own work are confirmed by a recent study in France (Beauvais, Garrabos, Saint-Marc, Chabanon 1997).
5 - STERILISATION OF THE MENTALLY HANDICAPPED
The prevalence of sterilisation of mentally handicapped individuals is unknown. However, a recent study in Gironde showed that more than a third of young mentally handicapped women had been sterilised, about one third used a contraceptive method and the others used neither contraception nor sterilisation (Pinard 1996). Sterilisation is not only an alternative to contraception, it is also a specific method for managing the sexuality and reproductive capacity of women. It is not possible to extrapolate these results, particularly as the sterilisation of mentally handicapped women is often denied: "This practice is almost unknown in France today, even if some parents, alarmed by the sexuality of their children and its possible consequences, want such a solution" (Durand 1991, p.86). It is very difficult to obtain precise epidemiological data given the secrecy surrounding this practice. Sterilisation is requested by a third party (the family in most cases) or is suggested by health care professionals, with the aim of preventing "unwanted" births. In some cases there are demands for sterilisation after sexual abuse, after a pregnancy has occurred in a special institution or when the sexual behaviour of a young woman is considered to be uncontrollable. As only mentally handicapped women are sterilised, their social integration and autonomy is difficult to obtain (Diederich 1997).
There appear to be four underlying motivations for family requests for sterilisation: the handicap is permanent and irreversible; sterility is seen as a characteristic of the mental deficiency; the girl does not seem to be interested in sexuality but has to be protected from pregnancy in case of sexual abuse; and parental inability to control events. This last seems to be the central nucleus of motivation for parents demanding the sterilisation of their mentally-deficient daughter (Dupras 1981). Parents who deny the genitality of their children prefer sterilisation because it prevents their child, in a symbolic way, from becoming an adult (Héritier 1984).
-Information: many professionals charged with preparing mentally handicapped individuals for sterilisation feel they are giving "bad news" which may traumatise the patient, and this often makes them reticent to give detailed information. "Isn't the truth more traumatic than silence? Doesn't explaining risk throw them off balance? They are surrounded by barriers, there isn't the same openness as for ordinary people; they live in an institution which is less liberal, less free and less open. How can we help the person who becomes unbalanced? It would be like playing the sorcerer's apprentice. Some caregivers prefer to tell young mentally handicapped woman that the operation is reversible and that she can in the future have children. Belief in the reversibility of tubular sterilisation makes dialogue much easier for both the caregiver and the patient (Giami, Lavigne 1993). Most sterilisation are thus conducted either without the patient's knowledge or following misinformation. There is still debate about the reversibility of the operation and it certainly cannot be guaranteed. In any case, it is difficult to imagine any doctor going to great lengths to restore the reproductive capacity of a sterilised mentally handicapped woman (Macklin 1995).
-Patients often have difficulty understanding the procedures they are likely to undergo and the consequences. This constitutes another problem. It is known, particularly for patients with somatic illnesses, that the patient's understanding of his own state may be very poor due to the symptoms of the disease (Pédinielli 1987). All information about his state is thus likely to be interpreted by the subject in terms of his conscious and unconscious desires. This problem is more severe in individuals with intellectual deficiencies, particularly as concerns issues involving reproductive organs and functions. Analysis of infantile sexual theory (Freud 1908) has shown that this is the area of human activity that is the most susceptible to misunderstanding. It is therefore very difficult to ensure that the subject fully understands the suggestions made by those around him/her and who have control over what happens to him/her.
-The consent of the mentally handicapped individual illuminates the issues and forces underlying the decision to sterilise. This issue reveals the representations of the mentally handicapped developed by the people close to them, the assessment of their cognitive capacities, their ability to understand the problems that directly affect them and their relations with the various groups of people able to exert pressure on them. Caregivers wonder if these people are able to give their consent freely, clearly and deliberately, a necessary condition for any intervention. Thus they find themselves perplexed when the patient is not capable of giving consent.
The decision to sterilise is part of a complex process which may be based on the non-recognition of sexuality in the mentally handicapped. In this case, sterilisation acts as a permanent barrier to an adult sex life with its risk of procreation. In other cases, sterilisation is based on the acceptance of a sex life and is part of the framework of normalisation which enables increasing numbers of mentally handicapped individuals to live outside special institutions, to move around freely and to work. Sterilisation in these cases reduces the risks to which these individuals are exposed by their sexual activity. It also deals with the concerns of parents and educators that these individuals would be unable to look after any children they might have. Educators often recommend the use of a reversible form of contraception as part of a training project. However, some parents prefer sterilisation because it solves the problem "once and for all". Thus, health care professionals are often faced with a fait accompli and they have to deal with the psychological effects of the sterilisation operation. Studies have shown that regrets following a sterilisation operation are more frequent and more severe if the decision to sterilise was taken rapidly, when counselling is insufficient, or when the individual is psychologically vulnerable (Chi, Jones 1994, Bolte 1995).
The sterilisation of mentally handicapped women is thus not a purely private matter. It involves the wishes of the parents and the dominant social representations that fix the level at which an individual is regarded as competent to have and raise children. It also calls into question the ethics, codes of conduct and regulation of various professional groups interacting with handicapped people. Caregivers are responsible according to the regulations that govern their activity. Keeping sterilisation private, secret and taboo reinforces the notion of handicapped people as being confined to the care of their families and unable to participate in ordinary life in the way that normal citizens of democratic countries generally do.
6 - STERILISATION: AN EXTERNAL CONTROL ON THE SEXUALITY OF THE MENTALLY HANDICAPPED
The sterilisation of the mentally handicapped is a form of external control of their sexual lives. There are other manifestations of this control: the separation of the sexes in most special institutions, the administration of reversible contraception (either mandatory or with consent) and sometimes also abortion. Sterilisation of women often seems to be the principal method of preventing pregnancy and is linked to the double representation in which their sexuality is seen as uncontrollable, non-existent or controlled by someone else (in cases of sexual abuse). In some cases it preserves the illusion of the mentally handicapped individual as angelic. By keeping secret and taboo, it makes it possible to avoid the necessity for sex education which would tend to make the individual more autonomous. Sterilisation of the mentally handicapped at the request of the family makes it possible to avoid recognising their sexuality as a reality that must be taken into account in education projects. Sterilisation increases the areas of activity that are taken out of the control of mentally handicapped individuals. Although it is clear that these sterilisation are not the consequences of a planned eugenics project, eugenic thinking has certainly contributed to the justification of these practices.
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