An Infringement on Rights or a Practical Response?

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MACKENZIE MORRISON

STERILISATON OF INTELLECTUALLY DISABLED GIRLS AND YOUNG WOMEN:

An Infringement on Rights or a Practical Response?

Submitted for the LLB (Honours) Degree

Faculty of Law

Victoria University of Wellington

2020

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Abstract

The sterilisation of intellectually disabled girls and young women to render them incapable of reproduction sees a potential violation of both the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities. Sterilisation is often justified as being in the ‘best interests’ of the child when they are unable to give consent due to their lacking in capacity as a result of their intellectual disability. However, the implementation of supported decision-making under the social model of disability supports the increasingly held notion that children, and those with intellectual disabilities, are capable of expressing their views when provided with the right mechanisms. This paper finds that from a rights-based perspective, sterilisation of intellectually disabled girls and young women violates a state’s international obligations under the aforementioned Conventions, and that flaws are present in the rationales employed to justify this medical procedure. However, in limited and exceptional circumstances, it may be a practical option. Legislative reform or the application of more stringent policy will be the most pragmatic way to effect change and ensure that a fully explored process of options is undertaken prior to any sterilisation.

Statement

The author is a current BA/LLB(Hons) student at Victoria University of Wellington with no conflicting affiliations.

Keywords: “Sterilisation”, “Intellectual Disability”, “Capacity”, “United Nations Convention on the Rights of the Child”, “United Nations Convention on the Rights of Persons with Disabilities”.

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I Introduction

In all walks of life, children are often denied the opportunity to make decisions for themselves. A cornerstone of healthcare is the ability to give or refuse consent, and the right to make decisions about care and treatment. However, consent and capacity issues arise regarding medical decision-making of and for children. In particular, for intellectually disabled children who are deemed incapable of consenting to medical treatment due to incapacity arising from their disability, leaving parents and other authority figures to make decisions for them.

Sterilisation, as a medical procedure performed on intellectually disabled children, sees many rationales employed to justify it as a course of action without the consent or understanding of the patient. Significant evidence exists that sterilisations are often carried out at the request of family members or medical professionals, without attention given to the will or preference of the intellectually disabled child themselves.^0F¹ This raises issues regarding the practice and its potential infringement on rights, particularly when performed on children. Although reasons for subjecting individuals to sterilisation differ, it is consistently imposed upon those who are vulnerable and powerless.^1F² Abuse of power is also common to involuntary sterilisations.^2F³ Rights advocates have long argued for the prohibition of sterilisation of females with disabilities without their consent.^3F⁴

Although young males may face circumstances of a similar nature, sterilisation is an overwhelmingly female issue that rests on the basis that females should experience the

1 Anna Arstein-Kerslake “Gendered denials: Vulnerability created by barriers to legal capacity for women and disabled women” (2019) 66 International Journal of Law and Psychiatry 101501 at 101506.

2 Jean-Jacques Amy and Sam Rowlands “Legalised non-consensual sterilisation – eugenics put into practice before 1945, and the aftermath. Part 1: USA, Japan, Canada and Mexico” (2018) 23(2) The European Journal of Contraception & Reproductive Health Care 121 at 121.

3 Jean-Jacques Amy and Sam Rowlands “Involuntary Sterilisation: We Still Need to Guard Against it” (2018) 44 BMJ Sex Reprod Health 239 at 239.

4 Linda Steele “Court Authorised Sterilisation and Human Rights: Inequality, Discrimination and Violence Against Women and Girls with Disability” (2016) 39(3) UNSW Law Journal 1002 at 1002.

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freedom to decide all matters relating to their own childbearing and fertility.^4F⁵ There is a greater bias towards the involuntary sterilisation of females and this paper will be limited in scope to considerations of intellectually disabled female children only.^5F⁶

The appropriateness of sterilisation for intellectually disabled female children and young women under the age of 18 (girls) is often justified based on being in their ‘best interests’

where they are assessed as being unable to give consent due to their lacking in capacity.

However, new approaches are emerging such as the social model of disability and supported decision-making, both influencing how we assess the capacity of an individual, particularly one with an intellectual disability. The paternalistic nature of the ‘best interests’ framework will be explored and how this is considered alongside consent and capacity in conjunction with the more specific rationales and justifications behind the practice of female sterilisation. Often, it is not just the interests of the child that are considered, and a balancing is undertaken with the rights of the parents, carers and wider community, giving rise to potential violations of The United Nations Convention on the Rights of the Child (CRC) and The United Nations Convention on the Rights of Persons with Disabilities (CRPD). This paper considers that only where sterilisation is overwhelmingly thought to be the right decision for an individual unable to give consent and who will never be able to give consent, once all social and medical factors have been considered, should it be raised as an option when all other avenues have been exhausted.^6F⁷ Finally, a note on terminology. An intellectual disability is traditionally identified based on the general mental abilities of an individual in the two areas of intellectual functioning and adaptive functioning.^7F⁸ A disability may sit on a fluid scale and can be mild in some cases but severe in others. The history of intellectual disability is full of derogatory terminology

5 Briana Walley “Wrongful Birth or Wrongful Law: A Critical Analysis of the Availability of Child-Rearing Costs After Failed Sterilisation Operations in New Zealand” (2018) 24 Canterbury Law Review 1 at 25.

6 Amy and Rowlands, above n 3, at 239.

7 Jean-Jacques Amy and Sam Rowlands “Sterilization of those with intellectual disability: Evolution from non-consensual interventions to strict safeguards” (2017) 23(2) JOID 233 at 233.

8 Ranna Parekh “What is Intellectual Disability?” (July 2017) American Psychiatric Association

<www.psychiatry.org>.

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that generally reflects the period and context within which it is used.^8F⁹ The CRPD defines persons with disabilities as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”^9F¹⁰ This paper will focus specifically on those with an intellectual disability and will thus use this terminology.

II What Is Sterilisation?

Sterilisation completed with the informed consent of the individual is a recognised and important form of birth control,^10F¹¹ but it should not infringe upon human rights.^11F¹² The act of sterilisation is broadly identified as a surgical intervention to render a person incapable of producing offspring.^12F¹³ It differs from other forms of contraception due to its permanent nature when performed correctly.^13F¹⁴ Female sterilisation can be achieved through numerous procedures such as a hysterectomy (the removal of the uterus with variable inclusion also of the cervix, fallopian tubes, ovaries, or part of the vagina), tubal ligation (occlusion of the fallopian tubes by clipping, tying or excising a segment of the tube),^14F¹⁵ and endometrial ablation (laser technology to destroy the uterine lining).^15F¹⁶ An alternative method is salpingectomy to completely remove the fallopian tubes, and often occurs during a hysterectomy.^16F¹⁷ Non-permanent contraceptives are also sterilisation methods such as the oral contraceptive pill or other subcutaneously placed hormonal controlling

10 United Nations Convention on the Rights of Persons with Disabilities 2515 UNTA 3 (opened for signature 30 March 2007, entered into force 3 May 2008), art 1.

12 Ebenezer Durojaye “Involuntary Sterilisation as a Form of Violence against Women in Africa” (2018) 53(55) JAAS 721 at 721.

13 NHS “Female sterilisation: Your contraception guide” (22 February 2018) NHS <www.nhs.uk>.

14 Anwuli Ofuani “The viability of supported decision-making in protecting adolescent girls with intellectual disability from involuntary sterilization in Nigeria” (LLD, University of Pretoria, 2019), at 11.

15 NHS, above n 13.

16 Laura Elliott “Victims of Violence: The Forced Sterilisation of Women and Girls with Disabilities in Australia” (2017) 6(3) Laws 2017 1 at 2.

17 NHS, above n 13.

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pharmaceuticals.^17F¹⁸ However, this paper will be focusing on the permanent nature of sterilisation achieved through operational procedures.

A Categories of Sterilisation

Generally, sterilisation can be categorised into three purposes; therapeutic, eugenic, and contraceptive.^18F¹⁹ Therapeutic sterilisation is generally performed to protect an individual where pregnancy may place her health at risk due to a predisposing congenital or hereditary condition, or that successive pregnancies may increase the risk of complications.^19F²⁰ Therapeutic justification for a hysterectomy may involve uterine or cervical cancer.^20F²¹ In this regard, those with disabilities are no different from those without.^21F²² No court authorisation is required when sterilisation without consent is necessary to save a female’s life or prevent serious damage to her health as it is considered lawful pursuant to the combined effect of tort and criminal law defences of consent and substituted decision- making.^22F²³

The opposite end of the therapeutic spectrum holds that sterilisation could be necessary for hygienic needs such as the inability to cope with menstruation – more relevant to the case of those with disabilities.^23F²⁴ Scholars suggest that sterilisation can only be authorised by a court where it is therapeutic, in that it is “medically necessary to preserve the life or physical or mental health of the incompetent minor.”^24F²⁵ An interesting distinction can be drawn between seeing a therapeutic procedure as necessary to preserve life, rather than the rationale behind sterilisation for intellectually disabled females as to improve quality of

18 Elliott, above n 16, at 2.

19 Bernard Dickens “Retardation and Sterilization” (1982) 5 International Journal of Law and Psychiatry 295 at 297.

20 At 297.

21 Melinda Jones and Lee Ann Basser Marks “The Dynamic Developmental Model of the Rights of the Child:

A Feminist Approach to Rights and Sterilisation” (1994) 2 The International Journal of Children’s Rights 265 at 284.

22 Dickens, above n 19, at 298.

23 Steele, above n 4, at 1007.

24 Dickens, above n 19, at 298.

25 Andrew Grubb and David Pearl “Sterilisation and the Courts” (1987) 46(3) The Cambridge Law Journal 439 at 443.

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life for themselves or those around them. Courts around the world have attempted to draw distinctions between therapeutic and non-therapeutic sterilisation, often justifying the former as being in the ‘best interests’ of the girl or young woman concerned.^25F²⁶ However, this line has become blurred in some cases.^26F²⁷

Reports find that forced sterilisation is still identified as occurring in 38 countries in the twenty-first century.^27F²⁸ However, it is difficult to collect recent data on sterilisations of intellectually disabled children in New Zealand (NZ). Although s 8(1) of the Contraception, Sterilisation, and Abortion Act 1977 requires medical practitioners to provide a report to the Director General of Health regarding every sterilisation performed, including the age of the patient and reasons for operation, this does not appear to be enforced when the procedure is privately funded.^28F²⁹ In NZ, there is a complete lack of statistics, emphasising the hidden nature of the matter.^29F³⁰

Involuntary sterilisation denies individuals reproductive choices for the remainder of their lives.^30F³¹ Although any type of birth control administered to anyone without capacity is coercive, sterilisation of girls and women has historically been used as the main avenue to reduce birth rates.^31F³² Several states implemented government-controlled sterilisation programmes in the late nineteenth century under the theoretical basis of eugenics, and

26 Willene Holness “Informed consent for sterilisation of women and girls with disabilities in the light of the Convention on the Rights of Persons with Disabilities” (2013) 27(4) Agenda 35 at 41.

29 Carol Hamilton “Sterilisation and intellectually disabled people in New Zealand – still on the agenda?”

(2012) 7(2) Kōtuitui: New Zealand Journal of Social Sciences Online 61 at 63.

30 Renu Barton-Hanson “Sterilization of men with intellectual disabilities: Whose best interest is it anyway?”

(2015) 15 Medical Law International 49 at 51.

31 Ofuani, above n 14, at 11.

32 Carolyn Frohmader “The Sexual and Reproductive Rights of Women and Girls with Disabilities” (paper presented to International Conference on Population and Development Beyond 2014, New York, July 2012) at 1.

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although many are now illegal, instances of involuntary, forced or coerced sterilisation persist.^32F³³

III A Foundation in Eugenics

Historical justifications for sterilisation have predominantly been based on eugenics.

Eugenics was a term coined by English scientist Francis Galton, a cousin of Charles Darwin,^33F³⁴ and is a “pseudo-scientific doctrine based on an erroneous interpretation of the laws of heredity.”^34F³⁵ The doctrine, which developed into a social movement, emphasised biological determinism,^35F³⁶ and aimed to reduce the proportion of people who were a ‘burden to society’, creating a foundation for those who believed in racial and class superiority.^36F³⁷ Eugenics is considered the practice of improving the human species through selective mating of people with specific, desirable, hereditary traits. It aims to breed out disease, disabilities, and undesirable characteristics from the population.^37F³⁸ The eugenics movement swept the world resulting in academics and other influential figures who promoted it convincing political stakeholders to enact laws authorising the sterilisation of people.

Eugenicists advocated for the sterilisation of low income and disabled persons to regulate fertility and perfect race. Positive eugenics encourages those who are most capable within a community to procreate whereas negative eugenics aims at reducing off-spring of those deemed unfit.^38F³⁹ Involuntary sterilization is part of negative eugenics theory.^39F⁴⁰

33 Deborah Park and John Radford “From the Case Files: Reconstructing a history of involuntary sterilisation”

(1998) 13(3) Disability and Society 317 at 318.

34 Jean-Jacques Amy and Sam Rowlands “Legalised non-consensual sterilisation – eugenics put into practice before 1945, and the aftermath. Part 2: Europe” (2018) 23(3) The European Journal of Contraception &

Reproductive Health Care 194 at 198.

36 Adam Cohen “The Supreme Court Ruling That Led to 70,000 Forced Sterilizations” (7 March 2016) NPR

<www.npr.org>.

38 “Eugenics” (15 November 2017) History <www.history.com>.

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The movement holds two essential beliefs; firstly, that intellectual and physical handicaps are mostly, if not entirely hereditary in nature, with early proponents believing that mental illness, criminal tendencies, and even poverty are inherited. Thus, selective breeding could rid these traits from the gene pool.^40F⁴¹ Secondly, that this scientific hypothesis was a legitimate basis for social engineering. The most directly relevant element of eugenic thought to this paper is the belief that persons who are intellectually disabled should not produce children. Eugenics has historically been the predominant rationale for sterilisation.

Although this may still be used as a rationale (as discussed in Section VII below), it is no longer the prevailing justification, and the eugenics theory as a promoter of selective breeding is considered outdated due to its morally objectionable limitations on freedom and respect for choice of the individual.^41F⁴²

A Buck v Bell

Sterilisation rates across the United States (US) remained relatively low until 1927, when the landmark Supreme Court decision of Buck v Bell set the stage for forced sterilisations based on eugenics.^42F⁴³ The case was a legal victory for the American eugenics movement and resulted in the sterilisation of Carrie Buck on the basis of hereditary ‘defects’.^43F⁴⁴ However, more recent analysis of the case concludes that she had a normal intellect. She had only been institutionalised at the Virginia Colony for Epileptics and the Feebleminded because her foster parents had left her there after she was raped and became pregnant at 17.^44F⁴⁵ The case is infamously known for Oliver Wendell Holmes’s conclusion that “three generations of imbeciles are enough,”^45F⁴⁶ as at six months of age, the child Carrie Buck birthed was deemed to be like her mother by a social worker because “there [was] a look about it that [was] not quite normal.”^46F⁴⁷ In the wake of this decision, more than 62,000

41 “Eugenics”, above n 38.

42 Raanan Gillon “Eugenics, Contraception, Abortion and Ethics” (1998) 24 Journal of Medical Ethics 219 at 2019.

43 Matthew Wills “When Forced Sterilization was Legal in the US” (3 August 2017) JSTOR Daily

<www.daily.jstor.org>.

44 Buck v Bell 274 US 200 (1927).

46 Wills, above n 43.

47 Above n 43.

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people, mostly females, were sterilised in the US. Within a decade of the case, 20 US states had enacted eugenic-based sterilisation laws, overwhelmingly directed at females.^47F⁴⁸ B Shifting Away from Eugenics

The US was the first country to undertake widespread compulsory sterilisation programs for the purpose of eugenics. However, in light of its connection to Nazi Germany, public opinion towards eugenics and sterilisation became very negative following World War II.

The Nazi regime sterilised several hundred thousand people using American eugenicist theory as a basis.^48F⁴⁹ Further atrocities were present in Nazi concentration camps, mainly at Dachau and Ravensbrück where sterilisation experiments were carried out.^49F⁵⁰ It is thought as many as 400,000 individuals, the majority female, were sterilised under the Nazi regime.^50F⁵¹ American eugenics is even referred to directly by Hitler in his 1934 book Mein Kampf.^51F⁵² Such historical practices make it difficult to dissociate forced sterilisation from eugenics.^52F⁵³

However, as new medical technology advanced, a modern form of eugenics coined ‘human genetic engineering’ developed. This is the changing or removal of genes to prevent or cure disease or improve the body in a significant manner.^53F⁵⁴ There are significant potential health benefits from this practice, including the prevention of life-threatening illnesses, but there is also a potentially dangerous cost. As technology advances, undesirable traits could routinely be ‘removed’ from offspring. Genetic testing already allows parents to identify some diseases in their child in utero which may cause them to terminate a pregnancy.^54F⁵⁵

48 Roberta Cepko “Involuntary Sterilization of Mentally Disabled Women” (1993) 8 Berkeley Women’s Law Journal 122 at 123.

49 Wills, above n 43.

52 “Eugenics”, above n 38.

54 John Harding “Beyond Abortion: Human Genetics and the New Eugenics” (1990) 18 Pepperdine Law Review 471 at 471.

55 Susannah Baruch “Preimplantation Genetic Diagnosis and Parental Preferences: Beyond Deadly Disease”

(2008) 8 Houston Journal of Health Law and Policy 245 at 246.

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This is deemed controversial as ‘negative’ traits are a subjective measure open to interpretation.^55F⁵⁶

IV The Rights Framework

Sterilisation is an important and recognised means of fertility control. Although laws are in place to allow people to make informed decisions about sterilisation as a legitimate way to control reproduction, laws allowing others to consent to the sterilisation of disabled persons who cannot freely give their own consent risk a denial of human rights.^56F⁵⁷ In May 2014, the World Health Organisation, and several United Nations entities,^57F⁵⁸ issued a joint statement on eliminating involuntary sterilisation.

Where a girl or young woman with a disability is deemed to lack the mental capacity to consent to procedures, non-consensual sterilisation can be lawful on two bases. First, where a third party, such as a parent or guardian, provides substituted consent with this consent authorised by a court or tribunal as being in the best interests of the person. Secondly, where a medical practitioner acts without any consent in an emergency situation demanding a sterilisation under the defence of necessity.^58F⁵⁹ It is important to note that in NZ, under s 7 of the Contraception, Sterilisation, and Abortion Act 1977:

Notwithstanding anything in any enactment or rule of law to the contrary, no person shall have the capacity to consent to the performance on any other person of an operation of sterilisation if that other person lacks the capacity to consent on his own behalf by reason only of his age.

56 The scope of this paper does not allow for further discussion of the benefits and disadvantages of these advances in medical technology and how they may impact society. There is great potential for further research around these legal and ethical issues, particularly pertaining to ‘designer babies.’

57 Rebecca Cook and Bernard Dickens “Voluntary and Involuntary Sterilization: Denials and Abuses of Rights” (2000) 68 International Journal of Gynecology & Obstetrics 61 at 61.

58 The Office of the United Nations High Commissioner for Human Rights, UN Women, UNAIDS, the United Nations Development Programme, the United Nations Population Fund, and the United Nations International Children’s Fund.

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A parent or guardian, or other caregiver cannot consent to the performance of a sterilisation procedure on another person, just because that person may be considered too young or lacking the capacity to consent on their own. However, the lines of capacity and consent are blurred when it comes to the intellectually disabled, and the relevant rights frameworks are set out below.

A The United Nations Convention on the Rights of the Child (CRC)

The CRC articulates children’s rights which signatory state parties must uphold. Adopted by the United Nations in 1989, the CRC was ratified by NZ in 1993. Although not domestically incorporated, the Oranga Tamariki Act makes direct reference to both the CRC and CRPD in s 5 as mechanisms to guide the courts according to the principles of said Conventions.^59F⁶⁰

Article 12 of the CRC holds that:^60F⁶¹

States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.

This raises issues for children and young persons with an intellectual disability, as according to the CRC they must be given the opportunity to express their views but only if they are capable of forming views.^61F⁶² Some may interpret an intellectual disability as a barrier to capability, but this caveat has “long been criticised as infantilising and paternalistic.”^62F⁶³ Section 6 of the New Zealand Care of Children Act 2004 removed the

60 Oranga Tamariki Act 1989, s 5(1)(b)(i).

61 United Nations Convention on the Rights of the Child 1577 UNTS 3 (opened for signature 20 November 1989, entered into force 2 September 1990), art 12.

62 UNCRC Committee General Comment No. 12: The Right of the Child to be Heard UN Doc CRC/C/GC/12 (20 July 2009) at [28].

63 Mark Henaghan “Article 12 of the UN Convention on the Rights of the Children: Where Have We Come from, Where Are We Now and Where to from Here?” (2017) 25 The International Journal of Children’s Rights 537 at 540.

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caveats of ‘capable’ of forming a view and ‘age and maturity’ when the courts are taking into account children’s views in line with the CRC.^63F⁶⁴

There is also great hypocrisy surrounding art 12 of the CRC. It was one of the most controversial provisions in drafting due to it being perceived as importing the ability to undermine adult authority – a key reason why the US has not ratified the CRC.^64F⁶⁵ As Freeman observes, “many of today’s critics of children’s rights are passionate defenders of the rights of others, notably of the rights of parents.”^65F⁶⁶ Furthermore, the Convention itself was achieved without the consultation of children, in direct contravention of the spirit of the CRC, particularly in terms of art 12.^66F⁶⁷ A further significant criticism is that art 12 is easy to comply with by an outward show of consultation, but the views of the child may be ultimately ignored anyway.^67F⁶⁸ There may be heightened risk of such ‘lip-service’ where the child concerned is intellectually disabled.

This occurred in the most well-known Australian case of Secretary, Department of Health and Community Services v JWB (‘Marion’s Case’) concerning 14-year-old ‘Marion’ whose parents applied for a sterilisation. Marion was intellectually disabled, deaf, had epilepsy, and experienced ‘behavioural problems.’ On appeal, the majority of the High Court held that parental or guardian consent to sterilisation of a girl with a disability, who did not have the legal capacity to consent, was sufficient to render the procedure lawful.^68F⁶⁹ At the time, Marion’s Case was considered progressive in regard to human rights as it considered children with disabilities through the ‘best interests’ lens for one of the first times.^69F⁷⁰

64 At 542.

65 Laura Lundy “‘Voice’ is not enough: conceptualising Article 12 of the United Nations Convention on the Rights of the Child” (2007) 33 British Educational Research Journal 927 at 934.

66 Michael Freeman “Why It Remains Important to Take Children’s Rights Seriously” (2007) 15 International Journal of Children’s Rights 5 at 6.

67 Henaghan, above n 63, at 538.

68 Lundy, above n 65, at 938.

69 Secretary, Department of Health and Community Services v JWB and SMB (‘Marion’s Case’) [1992] HCA 15; (1992) 175 CLR 218.

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However, at no point were Marion’s wishes attempted to be obtained, seeing a violation of art 12 of the CRC.^70F⁷¹

When considering the rights of art 12 for a child to express oneself, particularly in the context of those with intellectual disabilities, art 5 is also of importance:^71F⁷²

States Parties shall respect the responsibilities, rights and duties of parents or, where applicable, the members of the extended family or community as provided for by local custom, legal guardians or other persons legally responsible for the child, to provide, in a manner consistent with the evolving capacities of the child, appropriate direction and guidance in the exercise by the child of the rights recognised in the present Convention.

The use of the phrase ‘evolving capacities’ implies a recognition that capacity is on a sliding scale and will develop as children move into adulthood.^72F⁷³ Daly finds that art 5

“positions parents not as owners or even solely protectors of their children but… as holders in trust of children’s rights” seeing the parental role as one that develops in-line with the child’s developing capacity.^73F⁷⁴ This is important regarding potential sterilisation due to the permanent nature of the procedure, as rights may be limited at an early age where capacity still has the potential to develop later on in life to eventually provide consent.

Although the language of art 5 does appear to take steps in formally recognising a more modern approach to the rights of the child and their capacity to express these rights, the provision could also be interpreted as yielding rights back to the parent through the requirement that responsibilities, rights, and duties of parents are respected. It is as if the CRC gives broads powers with one hand under art 12, and then takes some of this back with art 5. Although it is detailed that respecting these responsibilities must be in a manner

71 At 6.

72 United Nations Convention on the Rights of the Child, art 5.

73 Aoife Daly “Assessing Children’s Capacity” (2020) 28(3) The International Journal of Children’s Rights 471 at 479.

74 At 479.

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consistent with the evolving capacity of the child, there is room for interpretation in a manner that could significantly limit the rights of the child.^74F⁷⁵ Although family interests may be well-intentioned and motivated by goodwill, they should “never be allowed to trump the interests of people with [an] intellectual disability.”^75F⁷⁶ This is particularly relevant to sterilisation where the rights of the parent and carer are given weight in regard to managing menstruation of the individual.

A further primary article for consideration is art 23 outlining the rights of children with disabilities.^76F⁷⁷ The CRC recognises that children who are disabled, either mentally or physically, have the right to a full and decent life, “in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.”^77F⁷⁸ It is a “basic principle that all children and young persons with intellectual disabilities should be able to enjoy citizenship on an equal basis with others.”^78F⁷⁹ What gives rise to serious rights issues is that in this group of children, girls in particular, by reason of their young age, it is unlikely that sterilisation would ever be contemplated, let alone judicially sought for those who are not disabled.^79F⁸⁰ This is illustrated in the 1995 Australian Family Court decision of P v P that considered the legal test for court authorisation of sterilisation.^80F⁸¹ At the time of application, the child, ‘Lessli’ was 16. Her mother made the application for Lessli’s hysterectomy. She was described as having temporal lobe epilepsy and low- moderate range intellectual disability as well as obsessive behaviours, wandering habits, underdeveloped basic living skills, and poor social skills.^81F⁸² Key grounds were to prevent menstruation and pregnancy.^82F⁸³ Lessli was aware of when her period began and could shower and use a pad, but had no concept of time so needed reminding to do this. At first

75 Respecting the evolving capacity of the child reflects the test for competence established in Gillick v West Norfolk and Wisbech A.H.A (Gillick), discussed at Section V below.

76 Barton-Hanson, above n 30, at 72.

77 United Nations Convention on the Rights of the Child, art 23.

78 Article 23(1).

79 Michael Browne and Michelle Millar “A rights-based conceptual framework for the social inclusion of children and young persons with an intellectual disability” (2016) 31 Disability & Society 1064 at 1064.

81 P v P (1995) 19 Fam LR 1.

82 At 6.

83 At 8.

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instance, a ‘but for’ test was applied by Moore J which found that sterilisation should not be undertaken.^83F⁸⁴ However, an appeal was allowed, and sterilisation was authorised by the Court, finding that Moore J should have applied the ‘best interests’ test set out in Marion’s Case rather than the ‘but for’ test.^84F⁸⁵

The initial employment of the ‘but for’ test illustrates that if this was the legal test, it is unlikely that sterilisation of intellectually disabled girls would ever be permitted.^85F⁸⁶ This leaves states who continue to practice sterilisation, particularly where the views of the child are not sought, in potential violation of art 12 and art 23 of the CRC.

B The United Nations Convention on the Rights of Persons with Disabilities (CRPD) Prior to the CRPD, the right to legal capacity of disabled people was not given any particular attention. The purpose of the CRPD is to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”^86F⁸⁷ It was the first treaty attempting to tackle issues for those with a disability from a rights-based perspective.^87F⁸⁸ To some extent, the CRPD abandoned the medical disability model that portrays individuals with disabilities “as incapable and in need of protection and correction,” instead adopting the social model of disability.^88F⁸⁹ It was ratified by NZ in 2008 without reservations.^89F⁹⁰ Thus, NZ must make a regular progress report to the United Nations on how they have implemented the CRPD into domestic legislation.^90F⁹¹

84 At 20.

85 At 27.

87 United Nations Convention on the Rights of Persons with Disabilities, art 1.

88 Felipe Jaramillo Ruiz “The Committee on the Rights of Persons with Disabilities and its take on sexuality”

(2017) 25(50) Reproductive Health Matters 92 at 92.

89 At 92.

90 Hamilton, above n 29, at 62.

91 Office for Disability Issues “Implementation of the Convention in New Zealand” (13 June 2019) Ministry of Social Development <www.odi.govt.nz>.

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Article 12 of the CRPD places an obligation on states to give access to support to persons with disabilities in order for them to exercise their legal capacity,^91F⁹² as part of a right to equal recognition under the law.^92F⁹³ Legal capacity is the recognition of an individual, or other entity, as a legal person or actor.^93F⁹⁴ Article 12 supports the idea of universal legal capacity, as the CRPD affirms persons with disabilities possess full legal capacity regardless of their mental capacity.^94F⁹⁵ Until relatively recently in history, and unfortunately still present in some societies, women and children were or are considered to be the property of their fathers or husbands.^95F⁹⁶ Although many of these laws have been abolished, notions that women are less able to make decisions continue to permeate legal capacity law. Such notions are often found in the context of reproductive rights and choice for women, and in some jurisdictions, remain non-existent or ineffectual.^96F⁹⁷ Viewing women and girls in this light is exacerbated where they may also have a disability. Denials of and barriers to legal capacity are often experienced at a higher rate by disabled females.^97F⁹⁸ The first General Comment by the United Nations Committee on the Rights of Persons with Disabilities (CRPD Committee) was written on art 12 of the CRPD, and the right to equal recognition before the law.^98F⁹⁹ The General Comment made distinctions between legal capacity and mental capacity, finding that legal capacity was an individual’s recognition as a legal person and agent but that mental capacity was a distinct concept relating to an individual’s decision-making and cognitive skills. The CRPD Committee affirmed that “a person’s status as a person with a disability or the existence of an impairment (including a physical or sensory impairment) must never be grounds for denying legal capacity or any

92 Shih-Ning Then and others “Supporting decision-making of adults with cognitive disabilities: The role of Law Reform Agencies – Recommendations, rationales and influence” (2018) 61 International Journal of Law and Psychiatry 64 at 64.

94 Arstein-Kerslake, above n 1, at 101503.

95 Iris Reuvecamp and John Dawson (eds) Mental Capacity Law in New Zealand (Thomson Reuters, Wellington, 2019) at 99.

97 At 101504.

98 At 101501.

99 UNCRPD Committee General Comment No. 1: Article 12 (Equal recognition before the law) UN Doc CRPD/C/GC/1 (19 May 2014).

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of the rights provided for by art 12.”^99F¹⁰⁰ The General Comment also found that the right to legal capacity should see states transition away from substituted decision-making to systems of supported decision-making.^100F¹⁰¹ This has significant implications on many areas of the law, particularly concerning consent, and will be discussed further in this paper in Sections V and VI below.^101F¹⁰²

Article 7 of the CRPD accords with art 23 of the CRC in affirming equal rights to children with disabilities as to those without, whilst also importing ‘best interests’ language:^102F¹⁰³

(1) States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.

(2) In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.

(3) States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realise that right.

This is similar in nature to art 12 of the CRC guaranteeing the right to children to express their views through the use of the same language employed in art 7(3) of the CRPD.

Particularly relevant to sterilisation is art 6 of the CRPD recognising that women and girls with disabilities are often further exposed to discrimination than their male counterparts, and that measures should be taken to ensure full and equal enjoyment of rights, and empowerment of females to enjoy and exercise the rights and freedoms present in the Convention.^103F¹⁰⁴ Limitations on reproductive choice act as a barrier to exercising legal

100 At [9].

101 Then and others, above n 92, at 64.

104 Article 6.

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capacity.^104F¹⁰⁵ Although an issue where intellectual disabilities may prima facie indicate that capacity is not present, how we analyse capacity and obtain consent are seeing significant changes in practice as later discussed in Section V below.

The CRPD reinforced that sterilisation is a violation of human rights for those with disabilities who cannot provide consent.^105F¹⁰⁶ Article 23(1)(c) speaks directly to this by holding that states should ensure for persons with disabilities, including children, that they retain their fertility on an equal basis with others.^106F¹⁰⁷ Undoubtedly, this includes the capacity to retain one’s reproductive organs. The CRPD Committee has also made formal assertions that any involuntary sterilisation of females with disabilities, or any other reproductive discrimination is in violation of multiple provisions of the CRPD, and has urged states to abolish the practice without the full and informed consent of the individual concerned.^107F¹⁰⁸ Although these findings reinforce in theory that sterilisation should not be permitted, to generalise that there are no situations under which sterilisation would be justified is to ignore the practical realities of life. This will be further discussed in Section X below.

1 Sterilisation as a form of violence

The CRPD Committee has recognised that sterilisation of a woman or girl without her consent is a form of violence.^108F¹⁰⁹ This is reinforced by art 16 of the CRPD, which guarantees freedom from exploitation, violence, and abuse. Particular note is made regarding violence and abuse on gender-based aspects, which is central to discussions surrounding the involuntary sterilisation of girls and the failure to obtain consent.^109F¹¹⁰ The CRPD Committee stated that “forced, coerced and otherwise involuntary sterilisation may be considered not only violence, exploitation and abuse but also cruel, inhuman or degrading treatment or

107 United Nations Convention on the Rights of Persons with Disabilities, art 23(1)(c).

109 At 11.

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punishment.”^110F¹¹¹ The physical and psychological effects of having the opportunity for reproduction removed are life-long.^111F¹¹²

V Capacity & Consent

For medical treatment such as sterilisation to be lawful, “the consent of the individual receiving treatment, or someone legally entitled to consent on their behalf must be provided.”^112F¹¹³ How we perceive and consider capacity and consent has considerably evolved over the past few decades. Capacity is used to refer to one’s cognitive abilities, namely the processes of knowing, judging, and evaluating information to draw conclusions.^113F¹¹⁴ In a legal context, capacity is the ability to make decisions that are viewed as valid.^114F¹¹⁵

The binary approach to capacity, that one either possesses it or does not, has been heavily criticised in the past decade.^115F¹¹⁶ A more modern approach finds that everyone should be presumed to have capacity, unless it is shown otherwise, through proper assessment, that they do not.^116F¹¹⁷

Capacity is attributed in most jurisdictions to persons deemed capable of exercising free will and choice over actions that have legal effects.^117F¹¹⁸ In NZ, someone is considered to possess capacity when they can “understand the information relevant to the task or decision involved; retain that information; use it or weigh it, in the process of making a decision;

and communicate their decision.”^118F¹¹⁹ Intellectual disabilities tend to be non-progressive and have their onset early in the individual’s life.^119F¹²⁰ In some situations, potential capacity

112 At 11. The extensive scope of this issue warrants further analysis but is not the focus of this paper.

113 Reuvecamp and Dawson, above n 95, at 255.

114 Daly, above n 73, at 473.

118 Ofuani, above n 14, at 18.

120 At 59.

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issues will be obvious, but in others, where an individual has a milder intellectual disability, this can be less apparent and difficult to pick up.^120F¹²¹ The issue of determining capacity is further complicated by the lack of a clear and comprehensive overarching test. Instead, NZ employs a variety of different tests that are shaped by the particular decision at hand.^121F¹²² Validity of consent is achieved through capacity and the provision of adequate information that is free from coercion or undue influence.^122F¹²³ Informed consent is a central part of the basic rights of freedom and self-determination and should apply to the provision of health and disability services. This creates serious issues of consent to sterilisation for those with an intellectual disability, particularly due to the permanent nature of the procedure.

Furthermore, it can be conceptually challenging for many to consider children with intellectual disabilities as possessing any form of capacity.^123F¹²⁴

A New Zealand’s Approach to Children’s Capacity

Section 11 of the New Zealand Bill of Rights Act 1990 states that every person has the right to refuse to undergo any medical treatment. Considerations of capacity and the use of substituted consent for children challenge this inherent right. Children’s capacity is notoriously difficult to define.^124F¹²⁵ Chronological age boundaries between minors and adults are drawn in all developed societies for legal purposes.^125F¹²⁶ NZ does have a rights-based focus involving the child, parent, and medical professionals to determine decisions in principle, but the reality of this may be quite different.^126F¹²⁷ When a child does not possess the capacity to make a decision, their parent or guardian has legal status to consent or refuse on their behalf.^127F¹²⁸

121 At 49.

125 At 472.

126 Laurence Steinberg and others “Adolescents’ Cognitive Capacity Reaches Adult Levels Prior to Their Psychosocial Maturity: Evidence for a “Maturity Gap” in a Multinational, Cross-Sectional Sample” (2019) 43 Law and Human Behaviour 69 at 70.

127 Rebecca Babcock “Medical Decision-Making for Minors: Using Care Ethics to Empower Adolescents and Amend the Current Power Imbalances” (2016) 8 Asian Bioethics Review 4 at 11.

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The Care of Children Act 2004 places restrictions on children and young persons in NZ regarding their ability to give consent. Section 36(1) of the Act provides that those of, or over the age of 16 are able to give, or refuse consent, as if they were of full age – if the procedure will be to their ‘benefit’. However, this is an ambiguous and subjective term, and in the case of sterilisations, justifications and rationales for such a procedure as

‘beneficial’ to an intellectually disabled girl are contentious, as will be discussed later.

A large grey area exists for those who are 16 or 17 years of age.^128F¹²⁹ At this age, although the views of the parents will be taken into account, it is up to the health provider to assess whether the person can provide consent for the procedure based on their capacity.^129F¹³⁰ For those under the age of 16, the Care of Children Act confers the authority to make decisions concerning medical treatment on the child’s guardians, together with medical professionals.^130F¹³¹ In regard to medical treatment, the law is concerned with who has the authority to make the relevant decision and then whether the action is in the child’s best interests.^131F¹³² It is well established that parents and guardians can make medical decisions for their minor children, “but it is not a right without limitations.”^132F¹³³ At common law, the capacity to consent to medical treatment is measured on an individual’s abilities, understanding, and the significance of the decision following the Gillick test.^133F¹³⁴

129 Hamilton, above n 29, at 62.

130 At 63.

131 Peter Skegg “Capacity to Consent to Treatment” in Peter Skegg and Ron Paterson (eds) Health Law in New Zealand (Thomson Reuters, Wellington, 2015) 213 at 238;

Hamilton, above n 29, at 62.

132 Jeanne Snelling “Minors and Contested Medical-Surgical Treatment: Where Are We with Best Interests?”

(2016) 25 Cambridge Quarterly of Healthcare Ethics 50 at 51.

133 Julia Epstein and Stephen Rosenbaum “Revisiting Ashley X: An Essay on Disabled Bodily Integrity, Sexuality, Dignity, and Family Caregiving” (2019) 35 Touro L Rev 197 at 206.

134 Skegg, above n 131, at 239.

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B The Gillick Competence Test

The Gillick v West Norfolk and Wisbech A.H.A (Gillick) decision in the House of Lords is the leading case on children’s capacity.^134F¹³⁵ An important feature of the case was the determination of capacity to consent to medical treatment.^135F¹³⁶ Lord Scarman famously found that children did possess sufficient understanding around such issues as the case involved, and were, therefore, able to consent to medical decisions of their own accord, rather than being deemed incapable of decision-making based purely on their age.^136F¹³⁷ A child is Gillick competent when they have “sufficient understanding and intelligence to give… consent.”^137F¹³⁸ It was found in the case that a doctor who was consulted by a young women under the age of 16 was not acting unlawfully where he prescribed contraceptives to her as it was done in good faith for her protection against the potential consequences of sexual intercourse.^138F¹³⁹

Gillick competence has become the measuring rod for capacity.^139F¹⁴⁰ When a child is found not to be Gillick competent, parents, caregivers, or other authorities will decide for the child based on their best interests, but this yields to the child’s right to make their own decisions when they demonstrate a sufficient capability for decision-making.^140F¹⁴¹ The extent to which the Gillick test, in a medical-related case as a common law measure of capacity, is applicable in NZ has not been challenged by the courts. The test has been accepted in case law relating to guardianship and considering the capacity of children to participate in religious practice in NZ.^141F¹⁴² It is therefore assumed that no obstacle would arise to the practical application of Gillick in NZ if such a medical-related case arose, and that persons

135 Gillick v West Norfolk and Wisbech A.H.A [1986] AC 112 (HL).

136 Robert Lee and Derek Morgan “Sterilisation and Mental Handicap: Sapping the Strength of the State?”

(1988) 15(3) Journal of Law and Society 229 at 230.

137 Henaghan, above n 63, at 539.

138 Gillick v West Norfolk and Wisbech A.H.A, above n 135, at 169.

139 Lee and Morgan, above n 136, at 229.

140 Freeman, above n 66, at 12.

141 Hawthorne v Cox [2007] 1 NZLR 409 (HC) at [58].

142 Hawthorne v Cox; Moore v Moore [2014] NZHC 3213, [2014] 2 NZLR 787; Sullivan v Nash FC Manukau FAM-2007-055-321, 30 April 2008.

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under the age of 16 can consent to treatment so long as they meet the Gillick requirements.^142F¹⁴³

However, when a child or young person is deemed not to be Gillick competent, as is likely to be the case for those with intellectual disabilities, decisions regarding any medical procedure, such as sterilisation, must be based on the welfare and best interests of the child as provided for in the Care of Children Act.^143F¹⁴⁴

C Capability of Children to Express Views

The legal view that children are incapable of making decisions is increasingly challenged by medical studies that illustrate the large extent to which minors do actually possess capacity.^144F¹⁴⁵ Weithorn and Campbell undertook a study to challenge our perception of seeing children as incompetent minors unable to make informed decisions about potential medical treatment.^145F¹⁴⁶ The responses of nine, 14, 18, and 21-year-old participants to hypothetical decision-making problems concerning medical and psychological treatment were analysed. The results showed that the participants were capable of comprehending the basics of what is required of them when asked to state a preference regarding the treatment dilemmas they were presented with, even at nine years old.^146F¹⁴⁷ Those who were 14 did not differ from the adult groups on any of the major standards of competence to consent either, as they demonstrated evidence of choice, understanding of the facts, reasonable decision-making processes, and a reasonable outcome of choice. The largest exception to the ability of children to show competent reasoning and decision-making in this study was the phrasing of questions. The way the questions and hypothetical decisions were presented did impact upon the answers of the minors or those we consider ‘children’

more than they did upon those we consider ‘adults’.^147F¹⁴⁸ This is cogent when we consider the different approaches that can be undertaken for decision-making to determine capacity

143 Skegg, above n 131, at 241.

144 Care of Children Act 2004, s 4.

145 Babcock, above n 127, at 5.

146 Lois A Weithorn and Susan B Campbell “The Competency of Children and Adolescents to Make Informed Treatment Decisions” (1982) 53 Child Development 1589 at 1589.

147 At 1596.

148 At 1596.

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and acquire consent from those with an intellectual disability. Competency is a factor relevant to many legal policies regarding consent requirements for minors.^148F¹⁴⁹ Perhaps failure to understand and demonstrate capacity is less about the individual and more about the way the question is asked.

There is no conclusively agreed on manner to measure cognitive capacity, but many studies have been undertaken to understand this concept further.^149F¹⁵⁰ Steinberg and others found that cognitive capacity, the process that supports the ability to logically reason, is matured by the age of 16.^150F¹⁵¹ They agreed with Weithorn and Campbell’s much earlier study regarding decision-making in a medical context, concluding that around age 16 sees full maturity in regard to situations that lend themselves to deliberation in decision-making.^151F¹⁵² However, they also discussed how decisions to undergo medical procedures in particular are not purely cognitive, and psychosocial elements of thinking will be present. Emotions such as fear may be a factor.^152F¹⁵³ Overall, however, they found that in such a situation, the presence of other responsible adults, such as doctors or lawyers, would possibly negate such factors and diminish strong emotional reactions relating to the decision-making.^153F¹⁵⁴ This is an interesting distinction to draw between how reasoning may be different and impaired depending on the decision to be made, and whether emotional factors may impede upon logical reasoning.^154F¹⁵⁵ This research contributes to growing scholarship on how we perceive children’s capability to make decisions and aids in our understanding of how to assess capacity, as it demonstrates the importance of retaining a distinction between cognitive maturity and psychosocial maturity when discussing decision-making capability.^155F¹⁵⁶

149 At 1596.

150 Steinberg and others, above n 126, at 71.

151 At 71.

152 At 82.

153 At 82.

154 At 82.

155 Laurence Steinberg and others “Are Adolescents Less Mature Than Adults?: Minors’ Access to Abortion, the Juvenile Death Penalty, and the Alleged APA “flip-flop” (2009) 64(7) American Psychologist 583 at 586.

156 At 586.

An Infringement on Rights or a Practical Response?

MACKENZIE MORRISON

STERILISATON OF INTELLECTUALLY DISABLED GIRLS AND YOUNG WOMEN: