Female and Disabled: A Human Rights Perspectiveon Law and Medicine
This is an extract from Jones, M. and Marks, L.A.B. Female and Disabled: A Human Rights Perspective on Law and Medicine in Petersen K (eds) Intersections: Women on Law, Medicine and Technology Dartmouth 1997, pp. 49-71. Copyright 1997.
As you read this, many young women around the world are being sterilised for no reason other than a perceived disability (Family Law Council of Australia (1993); Freeman, (1988); Goldhar; Scott; Shaw). The most common forms of sterilisations are tubal ligation, laparoscopic sterilisation, endometrial ablation with tubal ligation, endometrial ablation, hysterectomy and ovariectomy for women; and orchidectomy (removal of both testes) and vasectomy for men. Hysterectomy, which is major intrusive abdominal surgery, has been the most common procedure sought in a number of recent court cases concerning the sterilisation of girls with intellectual disabilities. Hysterectomy involves the removal of the uterus and in some cases it is accompanied by the removal of the fallopian tubes and possibly the ovaries. In prepubescent girls, the result is a failure to develop secondary sexual characteristics with all the concomitant psychological trauma. In all cases where the ovaries are removed, premature menopause with its accompanying problems will occur. Hysterectomy is appropriate when it is therapeutically indicated, for example, where there is uterine or cervical cancer, or recurrent, severe dysfunctional uterine bleeding which does not respond to hormonal therapy (Thompson & Birch, p. 1249).
Hysterectomy for sterilisation is not appropriate except in selected patients in whom there is a clear indication for hysterectomy over and beyond the desire for sterilization….The risk of complications following hysterectomy is greater than the risk of complications following tubal ligation; therefore hysterectomy should not be chosen as the most acceptable method of surgical sterilization unless significant gynaecological disease or symptoms are present. (ibid. p. 1254)
Historically, sterilisation has been considered to be the solution to problems of personal hygiene, sexuality and fertility. In the common law world sterilisations have been carried out without public scrutiny, sometimes at the behest of the family and sometimes at the behest of the institution caring for the girl.(Freeman (1988) pp. 56 – 50; Goldhar, pp 61- 75; Hayes & Hayes, pp. 76 -77; Scott , 806 fn 2, 809 – 816) The extent of such sterilisations is unknown. However it is clear that such procedures have been performed on girls and women in the absence of medical necessity. Patient consent has rarely been sought and in many cases the patients have not been informed of the true nature of the operation, some being deliberately deceived (for example they were told they were having an appendectomy). Even though sterilisations are generally performed in hospitals, until recently, statistics were not usually kept. (Carlson (1996) p. 9; Goldhar 157) Many of these cases have concerned pre-pubescent girls, the purpose being to prevent the onset of menstruation.
Although decisions about sterilisation were until recently largely a matter for private concern, they have been the subject of public debate and often the debate favoured sterilisation. In the last 20 years and particularly in the last 10 years, the issue of sterilisation of those with intellectual disabilities has moved into the public forum of the courts. It has also been the subject of investigation by law reform bodies in the United Kingdom, Australia and Canada. Despite the fact that, in the absence of statutory provision, court authorisation of sterilisations is now required in a number of jurisdictions, in a majority of cases the courts have concluded that the sterilisation should be performed on the woman concerned. Further where non-consensual sterilisation has been illegal such as in Germany, or where the court involvement is strictly speaking required, there is significant evidence that sterilisations are nonetheless performed in the absence of state sanction (Brady; Carlson(1996); Shaw).
The court cases have involved the sterilisation of women, including girls as young as 11, many prepubescent. The level of intellectual disabilities varied greatly from ‘dull normal’ through to mild, to moderate, to severe and profound. In some cases, the person with a disability was physically and intellectually disabled; in some cases they lived at home, and in others they were institutionalised. While the cases appear to be based in the discourse of rights, the rights of the person with a disability are not taken seriously. The interests of parents, carers and other family members are considered and at times supersede the rights of the person with a disability. Indeed at times the latter do not even seem to be in the equation. The New Zealand case, Re X11 (1991) 2 NZLR 365, is just one case in point. That case concerned a prepubescent girl with severe, multiple disabilities. Hillyer J in authorising the sterilisation, was principally concerned with her carer’s capacity to cope with her menstruation.
The sterilisation of women with intellectual disabilities has been justified, in the absence of therapeutic need, on four grounds: eugenics, fertility control, protection from sexual abuse and menstrual management (including counteracting blood phobias). The most common rationale prior to World War II was the theory of eugenics. In the later nineteenth century and the earlier part of this century there was a widespread belief that a variety of personal traits including intellectual disability (and pauperism) were inherited (Morris, p. 45). In the Western world eugenics received support across the political spectrum and for a variety of reasons (Goldhar). Social Darwinists were concerned to improve the human species. Socialists were attracted to eugenics for the betterment of society – effective contraception would lead to smaller families and an improved standard of living for working class people. Often sterilisation was a precondition for both living in the community and being accepted into an institution.
The practice of eugenics was enthusiastically adopted in the 1930’s in Hitler’s Germany. Nazi policy and practice during World War II was a key factor in the decline of the eugenics movement. Eugenics is now largely discredited and there is an understanding that heredity is not as simple a process as its proponents believed. Nevertheless, arguments based on eugenics do surface from time to time in the modern cases. For example in Re D, D’s mother argued in favour of her daughter’s sterilisation on the grounds of eugenics.22 It is interesting to note that D’s disability was regarded as severe by her mother where the Court found it was very mild. Furthermore, while the theory is no longer creditable its influence persists in popular attitudes and indeed in the guidelines for determining whether sterilisation is medically indicated which are found in the medical and legal literature and in some of the cases.33 For example in two Australian cases, Re Jane (1988) 12 Fam LR 662, 680 and Re Marion (No 2) (1993) 17 Fam LR 336, 351 – 352 the factors to be taken into account included the likelihood of the young woman engaging in sexual intercourse, the possibility of pregnancy, her parenting capacity and the views of her carers as the factors to be taken into account included the likelihood of the young woman engaging in sexual intercourse, the possibility of pregnancy, her parenting capacity and the views of her carers as well as alternate courses of treatment. See also P & P (1995) 19 Fam LR 1, analysed in Rhoades, H (1995) “Intellectual Disability and Sterilisation – An Inevitable Connection?” 9 Australian Journal of Family Law 234 One of the criteria in these guidelines is the patient’s disability – disability itself is taken to be one indicator of the therapeutic value of the proposed sterilisation.(Kaunitz, Thompson & Kaunitz, p. 438; Sheth & Malpani, p. 320)
With the demise of the eugenic justification for sterilisation, the focus shifted to fertility control, protection from sexual abuse and menstrual management. Ironically the move to normalisation and deinstitutionalisation empowered those arguing in favour of sterilisation on these grounds. In this context, the rationale for sterilisation has been that the person with a disability can more fully participate in the community if she is free of the risk of pregnancy, child birth, parenting and sexual exploitation.44 These arguments were persuasive in Re F (1989) 2 WLR 1025 and in the earlier decision of Re B  2 All ER 206.and more recently in the Scottish case of Lawrence unreported judgement of Lord MacLean, 22 February 1996 Arguments promoting sterilisation for the purpose of eliminating fertility have found favour with some judges.55 eg Re B where the House of Lords thought sterilisation (in that case a tubal ligation) was the most effective means of contraception. See also P & P (1995) where the young woman concerned had effectively used the contraceptive pill and was quite competent at looking after her own personal hygiene. However in the context of social policy promoting the least restrictive alternatives in the care of people with intellectual disabilities, sterilisation is rather an extreme form of fertility control, especially as a number of less intrusive methods of contraception are readily available.
Even where the fallacies of the fertility control argument have been recognised by the courts, the arguments relating to menstrual management and personal hygiene remain very influential (Kaunitz et al, op cit; Sheth & Malpani, op cit). Indeed menstruation is effectively classified as an illness, and menstrual management in some cases is regarded as providing a therapeutic indicator for hysterectomy.66 See particularly Re X, 369, 371 where Hillyer J was at pains to emphasise that the purpose of the medical procedure was to prevent menstruation and to distance himself from a rationale of fertility control. Once again principles of least restrictive alternative (as required by the principles of normalisation) are turned inside out to justify a major intervention in the woman’s “best interests”. In many of the court cases, the girl concerned had not yet begun to menstruate, and arguments about pain and discomfort associated with menstruation were purely speculative. In two cases there was anecdotal evidence that the girls concerned had blood phobias.77 Re K and the Public Trustee (1985) 19 DLR (4th) 255; Re X This of course is an issue which must be addressed, but frequently the solution sought in the cases was not the least restrictive alternative but that which categorically deals with the issue of menstruation by removing the uterus.
Much is made in the cases of the difficulties menstruation causes for the carers. Menstruation is one of the last taboos left in our society and it seems to touch a very sensitive core in our being. However menstruation is a normal womanly function88 This is beginning to be acknowledge in the medical literature as a sin of normalcy even for women with intellectual disabilities. See: Elkins, T., Gafferd, L., Wilks, C., Muram, D. & Golden, G., “A Model Clinical Approach to the Reproductive Health Concerns of the Mentally Handicapped.” (1986) 68 Obstetrics & Gynaecology 185 and not all women experience problems with menstruation. Menstrual management is part of personal hygiene and as such may form part of a personal training program. Generally menstrual management is only an issue where a person is not toilet-trained. In such cases the carers have to attend to the woman’s personal hygiene on a daily basis, several times a day, not just when the woman is menstruating. No-one argues that a catheter or a colostomy are appropriate measures for dealing with those who are incapable of being toilet trained. Normalisation is best achieved through counselling, information and practical training for carers and for the women. Where necessary this could be supplemented by medication. Sterilisation is an extreme way to deal with menstruation and should be avoided in the absence of therapeutic necessity (Carlson et al; Family Law Council).99 Family Law Council op. cit. 16, 29; Carlson, G, Taylor, M, Wilson, J & Griffin, J (1992) Menstrual Management and Fertility Management for Women who have an Intellectual disability: An Analysis of Australian Policy. Research Project, Commonwealth Department of Health, Housing and Community Services, Canberra, 13
Finally hysterectomy has been said to protect a woman from sexual abuse and the consequences of abuse. This argument is patently absurd. It is ridiculous to argue that hysterectomy is a deterrent which will protect a girl from sexual exploitation. If the girl is in known to be infertile and is intellectually disabled, especially if she is mute, she is more likely to be subject to abuse as the perpetrator may well escape detection.
Traditional approaches to rights have been insufficient to protect the intrinsic right to bodily integrity in the case of girls with intellectual disabilities. It is interesting to note that at one time the importance of women’s fertility was such that her autonomy, her power to control what happened to her body, was constrained by a public policy which limited her access to sterilisation procedures. Ironically, at the same time, a condition of entry into normal society for women with disabilities was their compulsory sterilisation.110 This practiced was institutionalised in many states of the USA in the compulsory sterilisation statutes. This practice also highlights the shifting category ‘disabled’, many young women and young men were sterilised in the USA who were indigent but not impaired. One famous example is Buck v Bell 274 US 200 (1927) . For a more detailed discussion see: Freeman (1988) 56 – 60; Goldhar, 163 – 164; and Scott, 809 – 8100
Certain of the landmark decisions of courts with respect to applications for sterilisation gave heart to those in the human rights camp. It appeared that judges were able to move wisely from medical conceptualisation’s to a ready acceptance of the human dignity of the person with a disability, and embrace concepts of normalisation. This was apparent in the early decision of Heilbron J in Re D where her honour refused to authorise the sterilisation procedure sought by the mother. Re Eve provides another example. There the Supreme Court of Canada, in a seminal judgment, held that no-one could authorise a non-therapeutic sterilisation on behalf of a person with a disability. The individual’s human dignity and right to bodily integrity overrides mere convenience.
From a human rights perspective, the Australian case of Marion could be considered a watershed. The judgments are informed by concepts of normalisation and ‘least restrictive alternative’. While in the event the child Marion was sterilised, the language of the judgments gave grounds for the belief that it was a base from which people with disabilities would be treated with equal concern and respect. This belief was supported in some of the first instance cases that followed the High Court decision such as P & P before Moore J and the decision of Warnick J in Sarah’s case.111 Re L and M, Director-General of Family Services and Aboriginal and Islander Affairs (1993) 17 Fam LR 3571 In all these cases disability was but one factor in the equation.
The dominance of principles of normalisation in the judgments of courts exercising parens patriae jurisdiction has been shortlived. In England the Court of Appeal beat a hasty retreat from Gillick in Re R and Re W, with the Master of the Rolls artificially distinguishing a right to make a determination from a right to consent. Surely if a person is legally competent to consent that person is legally competent to refuse treatment. If indeed parental authority decreases in direct proportion to the child’s emerging competence, then it is ridiculous to hold that the parent can override the child’s refusal. Even once parental authority ceases there is still a safety against folly – the court in its parens patriae jurisdiction retains a supervisory power until the child is 18.
In Australia the Full Court of the Family Court in overturning the decision of Moore J in P & P rejected the principles of normalisation and least restrictive alternative set out in Marion. This case concerned a young woman who required constant supervision but who was quite competent at managing her own personal hygiene. While her case was complicated by her epilepsy, there was medical evidence hysterectomy was not the least restrictive alternative. Other forms of contraception could safely be trialled prior to surgery. Should surgery have proved necessary this was surely a case where the less invasive tubal ligation was more appropriate. The Court seems to have been very concerned with the mother’s position as carer. The evidence was that Lessli would live with her mother once she finished school and that menstrual management was an issue in her relationship with her mother.112 According to the evidence it was not an issue at school or in the residence attached to the school where the young woman, Lessli, lived during the week.2 The Full Court was very critical of the decision at first instance and yet a close examination of that judgment reveals that it followed in the spirit of the High Court in Marion’s case.
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