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Sterilisation

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  • The sterilisation of girls
    and young women with intellectual disabilities in Australia: An audit
    of Family Court and Guardianship Tribunal cases between 1992-1998.

    This paper was presented at
    International Conference Disability With Attitude :Critical Issues
    20 years After International Year of Disabled Persons
    on 16th-17th
    February 2001 Parramatta Campus, University of Western Sydney, Australia
    and has been reproduced with the authors permission.

    Susan M Brady
    School of Social
    Work & Social Policy
    University of Queensland
    Brisbane, Qld 4072
    Australia
    s.brady@social.uq.edu.au

    ©Susan Brady 2001

    Abstract

    This paper will highlight
    the findings of research examining Family Court and state Guardianship
    Tribunal's originating materials and written reports from 'experts' and
    family members. It includes all sterilisation cases involving minors that
    have proceeded to legal judgment in Australia between 1992-1998. The central
    assertion is that non-consensual sterilisation continues to be framed
    as a medical problem to be 'cured' for family and social reasons. The
    findings raise systemic questions about the continuing social obstacles
    of discrimination, prejudice, and oppression facing girls and women with
    intellectual disabilities in Australia. Identified is a silence about
    individual competencies, a receding acknowledgment of the rights of the
    individual, and a declining focus on developmental and inclusive approaches
    to disability issues. On the basis of empirical findings the legal trend
    in decision-making in Australia is not towards a more restrictive approach
    to the sterilisation of children but a more relaxed one.

    Note: In this paper
    one application made to the Guardianship Tribunal forum for sterilisation
    by way of hysterectomy is not included in this audit. The application
    was withdrawn prior to medical and non-medical reports being filed. It
    therefore provided no data on reporter involvement, opinion and/or recommendation.
    Thus although there are 'officially' 20 applications for sterilisation
    to the Guardianship Tribunals only 19 have been included in the analysis.

    Introduction

    In Australia during
    the 1980's the legal and ethical issues surrounding the sterilisation
    of girls and women with intellectual disabilities was debated within disability
    advocacy, legal, and medical contexts. At the same time the emergence
    of Guardianship Tribunals in most Australian States advanced the rights
    and interests of adult women by requiring tribunal authorisation for a
    sterilisation procedure. It was not until 1992 that girls and young women
    had equal legal protection. In a landmark decision by the High Court of
    Australia called Marion's Case the court held that the right to authorise
    the sterilisation of a minor is not within the ordinary scope of parental
    power (Secretary, Dept of Health and Community Services v JWB and SMB
    (1992) 175 CLR). Today the Family Court of Australia and the Guardianship
    Tribunals of New South Wales and South Australia can authorise the sterilisation
    of girls and young women under 18 years. All sterilisation cases have
    involved females thus it is a gendered issue.

    The Principles for Decision-Making

    The High Court said
    the decision to sterilise must be a step 'of last resort' in other
    words that '.alternative and less invasive procedures have all failed
    or it is certain that no other procedure or treatment will work.' and
    '.in all the circumstances of the particular child the procedure is in
    the child's best interests'. (Marion at 259-60).

    The High Court made
    it clear that consideration should be given to; ".hearing from those
    experienced in different ways in the care of those with intellectual disabilities
    and from those with experience of the long term social and psychological
    effects of sterilisation" (Marion at p259).

    The approach taken
    by the High Court signalled that non-consensual sterilisation is not simply
    a medical decision. These decisions are moral decisions of a fundamental
    sort arising within the broader context of societal values and norms,
    and are about the rights and dignity of people with disabilities more
    generally. Decisions made by the court and tribunals may impact on the
    development of social values and social policy and therefore can have
    wide ranging effects beyond the individual concerned. Progressive decision-making
    can promote the rights and interests of people with disabilities. Equally,
    paternalistic decisions can oppress rights through the application of
    prejudicial values and attitudes, and can give an approval for the state
    and professionals to relax on principles of human rights, inclusion and
    equality.

    The Data in the Study

    The data is derived
    from court and tribunal files involving 38 sterilisation applications
    for girls and young women with intellectual disabilities between 1992-1998.
    There have been 19 applications for sterilisation in the Family Court
    and 19 applications in the Guardianship tribunals. These 38 cases have
    involved approximately 300 individual experts, writing 420 reports for
    the decision-maker/s. In this paper 'experts' are called 'reporters' because
    it was, in most instances, difficult to establish what might be considered
    expertise in disability related issues.

    Most commentary
    about sterilisation cases involves a 'content analysis' of legal judgements.
    This data is important because it is 'raw material' collected from the
    rank and file of those involved (professional and non-professional) and
    forms the information base provided to the court and tribunals. The data
    gives an insight into the reporters - their occupations, views and recommendations
    - moving discussion beyond the limits of the judgment. What must be acknowledged
    is the relative silence from the girls and young women. Their 'right to
    be heard' is through separate legal representation in the legal process.

    The Decision-Making Forums

    The Family Court
    is a federal court, essentially adversarial in approach and prefers parties
    involved to have legal representation which is costly. The state-based
    Guardianship Tribunals are 'inquiring' in approach, require no legal representation
    and charge no fees in relation to applications. Thus the process and procedure
    of each decision-making forum is different. Both forums have open hearings
    that may be closed at the discretion of the decision-makers.

    The Decision-Makers

    The Australian 'guardianship
    tribunal' is not constitutionally protected like the Family Court. Judges
    in the Family Court are given life long appointments. One judge hears
    the application for sterilisation, and the majority of them are male.
    The guardianship tribunal has panels of lay people from multi-disciplinary
    backgrounds with experience in disability issues, they are mostly part-time
    and appointed by the state government for fixed terms, usually three years.
    In sterilisation cases there is a requirement for a minimum of three tribunal
    members with at least one being female. Each tribunal comprises of a chair
    person who is a lawyer versed in human rights law, a professional member
    usually a doctor, and a 'community' member with a social science background
    or a person who has direct experience with disability, as persons with
    disabilities themselves, as advocates or carers. Some board members have
    both a professional background and personal experience.

    The Girls and Young Women

    The age of the girls
    and young women subject to sterilisation applications ranged between 10
    to 17 years. It has been reported in socio-legal commentary reviewing
    Family Court sterilisation judgments that the girls and young women have
    severe intellectual disabilities (Nicholson, Harrison & Sandor, 1995).
    The data has shown this is not an entirely correct appraisal.

    The Family Court
    (unlike the guardianship tribunals) tends to continue to apply tests for
    IQ as a measurement of capacity and then relegates capacity to measurement
    in terms of mental age. This is long recognised as discredited practice
    (Brantlinger, 1992). There appears to be a lack of appreciation in the
    Court about assessment based on adaptive skills. Notwithstanding the issue
    of 'measurement' it is clear that some of the girls are characterised
    as having severe intellectual disabilities when they do not. The Family
    Court has more applications where young women have a mild-moderate intellectual
    disability compared to the guardianship tribunals. All guardianship approvals
    include girls with both intellectual and physical disabilities and all
    have high support needs. Thus, the Family Court hears applications that
    involve young women with a wider range of individual competencies compared
    to the guardianship tribunals.

    The Decisions

    The Family Court
    has approved proposed hysterectomies in 17 out of 19 cases. One application
    was withdrawn prior to hearing. The only case not approved involved a
    young woman of 14 years who since infancy resided in a state institution.
    Her parents made the application. The judge in his summing up said;
    ".the parents wishes did not carry significant weight.their wishes
    did not impact on her at all. The child had no concept of their wishes
    and no feelings about whether their wishes were met or not. The parents
    were not involved in her daily care and there was no suggestion that their
    attitudes to or interaction with the child would change in any way dependent
    upon the outcome of their application." (re:Sarah, L and GMvMM; the Director-General,
    Department of Family Services and Aboriginal and Islander Affairs (1994)
    FLC 92-449).

    The wishes of the
    parents is a fundamental factor considered in Family Court matters. In
    all other Family Court matters the girl's primary carer has been her mother.

    The guardianship
    tribunals have approved 10 out of 19 cases. As noted above this jurisdiction
    tends to hear applications involving girls and young women with severe
    intellectual disabilities and high support needs. In 2 of the 10 cases
    the tribunal decided in favour of a less invasive procedure than hysterectomy
    and approved tubal ligation.

    The decisions illustrate
    that multi-disciplinary guardianship forums are less likely to approve
    a sterilisation procedure compared to a single judge in the court-based
    forum. They are also more likely to approve less invasive procedures like
    tubal ligation. There is a trend developing (decisions from 1995 onwards)
    that suggests that guardianship tribunals are becoming more likely to
    authorise sterilisation procedures. It is particularly evident in New
    South Wales.

    The Reporters

    Gynaecologists and
    paediatricians are the most frequently used medical reporters in sterilisation
    applications. The Family Court has a higher number of paediatricians and
    neurologists providing reports compared to the guardianship tribunal/s.

    Table 1: Comparison
    between Family Court and Guardianship Tribunal/s by occupation of Medical
    Reporters in sterilisation cases between 1992-1998.

    Reporter
    Family
    Court
    Guardianship
    Total
    Gynaecology
    41
    31
    72
    Neurology
    15
    3
    18
    Psychiatry
    5
    1
    6
    Paediatrics
    20
    8
    28
    Surgery
    3
    3
    6
    Genetics
    5
    3
    8
    Family doctor
    7
    12
    19
    Total
    96

    61
    157

    n= 38 applications
    for sterilisation comprising 19 in the Family Court and 19 in the guardianship
    tribunal/s.

    Table
    2: Comparison between Family Court and Guardianship Tribunal/s by occupation
    of Non-Medical reporters in sterilisation cases between 1992-1998
    .

    Reporter
    Family
    Court
    Guardianship
    Total
    Allied Health
    8
    5
    13
    Social Work
    3
    4
    7
    Psychology
    20
    16
    36
    Education
    18
    12
    30
    OPA/ILO*
    1
    18
    19
    Home help
    7
    4
    11
    Govt Dept
    -
    1
    1
    Parents
    21
    7
    28
    Total
    78
    67
    145

    n= 38 applications
    for sterilisation comprising 19 applications in the Family Court and 19
    applications in the guardianship tribunal/s. * OPA in South Australia
    is the Office of the Public Advocate an independent statutory agency for
    people with disabilities, and in NSW the ILO is the Investigation and
    Liaison Officer with the Guardianship Tribunal.

    Both the Family Court
    and the guardianship tribunals use psychologists and special education
    teachers as a main source of non-medical information. In the guardianship
    tribunals the statutory investigator (ILO) or advocate (OPA) also provide
    an 'investigation' report which comprehensively outlines the issues and
    the views of the family, professionals and non-professionals involved.

    The Family Court
    has more reports from family members than the guardianship tribunal. This
    is a procedural issue. In the court-based system affidavits (sworn written
    statements) are the method by which information is passed to the court.
    In the tribunal system family members participate in the process by talking
    directly to the tribunal. This procedural difference may in part also
    explain the lesser number of professional reports collected by the tribunal
    compared to the court. The tribunal process is participatory and informal
    in its approach and the multi-disciplinary composition of the board enables
    it to ask relevant questions and to clarify evidence with participants,
    including the young woman during the hearing.

    Recommendations made by Reporters

    Table 3 (below)
    provides an overview of the recommendations made by reporters. It excludes
    family members because they are not 'service providers' and because family
    members always support the proposed sterilisation. Reporters in the Family
    Court are more likely to make a recommendation in support of a sterilisation
    compared to reporters in the guardianship tribunals. Medical reporters
    are more likely to support a sterilisation compared to non-medical reporters.

    Table 3 : Comparison
    between Family Court and Guardianship Tribunal/s by recommendation by
    reporters in sterilisation cases between 1992-1998
    .

    FAMILY COURT

    GUARDIANSHIP TRIBUNERAL

    Reporter

    Support

    Oppose

    No
    rec*

    Total

    Support

    Oppose

    No
    rec*

    Total

    Medical

    77
    80.2%

    3

    3.1%

    16

    16.7%

    96
    100%

    47

    77%

    NIL

    14

    23%

    61

    100%

    Non-Medical

    21

    36.2%

    8
    13.8%

    29

    50%

    58
    100%

    18
    30%

    2
    3.3%

    40
    66.7%

    60
    100%

    Total

    98
    63.6%

    11
    7.1%

    45
    29.2%

    154
    100%

    65
    53.7%

    2
    1.7%

    54
    44.6%

    121
    100%

    n= 275 reporters.
    *no rec = no recommendation is made by the reporter.

    The non-medical reporters
    who do provide a recommendation in support of the proposed sterilisation
    are mainly psychologists with 42% supporting the procedure and 52% of
    special education teachers, while 56% of home help and paid carers also
    support the procedure. Special school teachers, home help and paid carers
    are all highly likely to know the family and continue to provide an ongoing
    service after the hearing of the application.

    The Reports

    Space does not allow
    for a wide selection of examples however those cited are fairly 'commonplace'.
    Verbatim quotes from reports are used and identified after each quote
    in brackets, is the occupation of the reporter, the year of the report,
    and the age of the young woman. All these young women were sterilised
    by hysterectomy.

    Reasons given for
    hysterectomy:

    "[she] exhibits
    the following maladaptive behaviours. Poor concentration, attention seeking,
    distractability, non-compliance, biting and picking her fingernails, poor
    eye contact, stubbornness, impulsivity, running away and stealing.."
    (Psychologist,
    1997; aged 12 years).

    ".she has impulsive
    behaviour .the time is well past when she should undergo a hysterectomy
    ."
    (Gynaecologist, 1995, aged 13 years)

    Menstruation apparently
    turns her into someone else and negates her capacity to think:

    "I have noticed
    that when she has her period she is not in control of her thought ."

    (Mother, 1997; aged 14 years)

    ".failure to
    carry out the surgery could significantly reduce her ability to participate
    thus impeding future progress or even causing deterioration in her level
    of functioning.."
    (Teacher, 1995, aged 15 years).

    Menstruation thus
    defined is an 'illness' changing her personality, and impacting upon her
    capacity to learn and develop.

    Social taboos and
    notions of responsible womanhood are linked to capacity to self-care:

    '.if a girl is
    unable to manage her menstruation either physically by herself or by indicating
    her needs then menstruation itself must be seen as a disability"
    (Paediatrician,
    1994; aged 13 years).

    ".a toilet hysterectomy
    would solve the problems of menstruation and contraception".
    ( Gynaecologist,
    1992; aged 14 years).

    ".she becomes
    embarrassed if other people know that she is menstruating."
    (Mother,
    1994, aged 15 years)

    The focus on dis-inhibition,
    lack of social norms and 'normal' adult behaviour highlights the social
    symbols attributed to menstruation: ".there's six girls in that house
    - there's six babies in the cottage menstruating..."
    (Mother, 1994;
    aged 15 years).

    ".she is dis-inhibited
    and unable to feel any embarrassment with her actions. She is unable to
    understand concepts of cleanliness ."
    (Psychiatrist, 1992; aged 14).

    ".she will never
    be able to manage her menstruation unaided. She has not and will never
    have any intellectual appreciation of normal adult female behaviour."
    (Psychiatrist, 1996; aged 13).

    A common theme is
    the need for a final solution to fertility, an approach considered by
    medical reporters as a less restrictive option:
    ".if a hysterectomy is not performed she is faced with the need for
    support for her reproductive health for the next 35 years or longer."
    (Gynaecologist, 1996; aged 12 years)

    Vulnerability to
    sexual abuse is a major theme in all applications. 'Inappropriate' behaviour,
    and good looks is considered a major determinant of sexual activity or
    abuse.

    ".body-wise she's
    a lovely looking girl, she's affectionate, she's caring but she's three
    in the mind."
    (Father ,1994; aged 15 years)

    ".since the onset
    of sexual maturity she displays an affectionate promiscuity which is the
    characteristic of women with intellectual disability'
    (Paediatrician,
    1998; aged 12 years).

    ".whilst I understand
    from previous reports that this young lady is not sexually active sexual
    exploitation of the disabled remains a probability during the course of
    their life time."
    (Gynaecologist, 1993, aged 15 years)

    Dominant Discourse

    The dominant approach
    to sterilisation is the medical approach (Schu, 1997). It conceptualises
    the young woman's disability as an individual pathology and a personal
    tragedy - for her and her family. The sterilisation is characterised as
    a 'simple' and 'common' procedure part of the surgical repertoire of many
    medical specialists. In a technical sense it is portrayed as inconsequential
    and of minimum risk. In a social sense (from a medical perspective) it
    offers a final solution to a myriad of problems potentially encountered
    because of disability. When questions about the potential long-term health
    effects on young women are raised they elicit the following:
    "...it would be very difficult to obtain meaningful information from
    these young women or older women as they may be now which would have any
    significance .I know of no information concerning attempted analysis post
    hysterectomy in the experimental animal on its subsequent physical or
    behavioural development or the incidence of disease. Surgical procedures
    do carry the risks of mortality and morbidity in particular the risk of
    wound infection and gut obstruction but in parallel [for these girls]
    long term drug administration also carries significant risks of side effects,
    in particular that of weight gain." (Paediatrician 1994; aged 12 years)

    The medical reporters
    are privileged in the construction of what is 'authoritative' and by corollary
    what or who lacks credibility (Conklin, 1997). The data suggests that
    other discourses like non-medical are recruited but cannot compete with
    the medical for authority. The dominant discourse silences competing discourses
    casting them as irrelevant, and merit-less and sometimes as harmful to
    the interests of the child or family. Although rare some medical reporters
    question the facts as presented: " .there is clearly a pervasive impression
    that these behavioural difficulties are related to the menstrual cycle.
    There are other possibilities including a heightened general level of
    tension and frustration and issues relating to emerging adolescence such
    as the desire to be more independent and concerns about self image. There
    is little evidence in any of the reports of a broader consideration or
    investigation of behavioural difficulties for example looking for other
    factors which might be contributing."
    (Paediatrician 1995; aged 15
    years).

    The response to
    his suggestions is telling:
    ".speculation that there may be some other cause for her distress is speculation
    of not the slightest weight: it is not shared by a single other person:
    he is entirely contradicted by the mother whose evidence is both uncontradicted
    and unchallenged". [They] .would wish the doctors who have treated her
    and know her and her condition to experiment further on her at notwithstanding
    the risk to her identified by those qualified to do so which they dismiss
    without explanation. Their proposals are highly speculative, risky, unexplained
    and unsupported ." (notes from Judges Legal Associate; 1995).

    Such responses close
    down the investigation of less invasive alternatives to hysterectomy.
    The young woman involved had displayed difficult and unsettled behaviours
    since the age of 5 years. The behavioural problems were not subsequent
    to menstruation as suggested in the applicant's medical reports. It is
    not of much assistance to an inquiry to have important evidence not put,
    untested or inconsistencies unexplored or alternative arguments not put
    or limply put. Confounding this is the lack of expertise regarding disability
    issues. Blackwood (1991:151) observes that
    "...judges will all too often accept or prefer the views of the medical
    profession to the exclusion of other relevant evidence and in some cases
    elevate opinions and assertions to the status of fact".

    Social and psychological
    effects of sterilisation are usually dismissed:
    "She has no understanding or awareness of the concepts of male/female
    identity femininity or motherhood and she would have no feeling of loss
    as a result of [the] procedure."
    (Psychiatrist, 1992; aged 12 years).

    Concerns are sometimes
    raised about pessimistic assessments of capacity:
    ".I was struck by the fact that it is claimed she has the reasoning
    of a five year old and in my view I would have thought this was a little
    pessimistic."
    (Gynaecologist, 1997, aged 14 years).

    Concerns are sometimes
    raised about undue influence: "... a slight unease in this case that
    the pressure is coming from a parental direction."
    (Paediatrician
    ,1997; aged 14 years).

    Sometimes there is
    concession to the possibility of psychological damage resulting from sterilisation:

    "It is likely that she will regret the fact that she can not have a
    baby and however transient this regret might be it will nevertheless cause
    her some psychological difficulty."
    (Psychologist,1998; aged 15 years).

    Society's interests
    in responsible reproduction above bodily integrity of 'the unfit' remains
    relevant today (Lesli-Miller, 1997). Many of the reports focus on alleged
    'unfitness for motherhood' a factor prevalent in social and judicial thought
    (Graycar, 1995).

    " she would be
    unable to care for a child.would certainly omit to make most critical
    parenting decisions .may commit acts of poor parenting out of frustration.."

    ( Physician, 1994; aged 14 years).

    Assessment of mothering
    abilities and images of perpetual childhood are referred to by mothers:
    "...still functioning at a three to five year old range and I don't
    think its fair to expect any three year old child to carry and care for
    an infant.."
    (Mother, 1994; aged 15 years)

    Normalisation is
    re-framed to lend credibility to assertions that sterilisation has facilitated
    the termination of expensive and restrictive institutional care for many
    and that surgical contraception can make an important contribution to
    normalisation policy (Haavik & Menninger, 1981).

    "Because of her
    emotional and physical needs she urgently requires an environment which
    can provide sound behavioural management and encourage her to develop
    some skills thus enhancing her self esteem. She also needs the opportunity
    to increase her social circle which is currently very small.hysterectomy
    will provide these opportunities"
    (Psychologist, 1993, aged 13 years).

    In a nutshell there
    is an assumption that sterilisation by removing the risk of pregnancy
    will enhance her quality of life because she can lead a 'normalised' life,
    allowed to venture into the community. This is an example of how foundational
    principles in the delivery of services to people with disabilities have
    been re-worked and re-constructed.

    Normalisation is
    about "the use of culturally valued means to enable people to live
    culturally valued lives"
    (abbreviated Wolfensberger definition cited
    in NIMR, 1985:65). Sterilisation for young women is not culturally valued
    in western societies.

    Discussion

    The study findings
    suggest the High Court decision in Marion - essentially a declaration
    that an old practice is wrong - has not produced a reform in attitudes,
    highlights discrepancies in decision-making between the court-based and
    guardianship forums, and identifies the 'reasons' accepted for 'lawful'
    sterilisation and inherent social prejudices.

    Debate about whether
    the decision should be governed by clear and legislated criteria or a
    discretionary one involving indeterminate best interests tests has happened
    in Australia but it has not resulted in reform (FLC, 1994; WALRC, 1994).
    The Family Court has rejected the need for legislation about when a sterilisation
    can be authorised and prefers an 'individualised' case-by-case approach.
    Keays-Byrne (1995) says that as a result the trend is not towards a more
    restrictive approach to the sterilisation of children but to perhaps a
    more relaxed one. The findings confirm this, and the trend is disturbing
    because sterilisation is irreversible and the harms associated with making
    a wrong decision cannot be altered by a subsequent review of decision
    making (Brady, 1995).

    In Australia, multi-disciplinary
    tribunals have provided one way in which non-lawyers can be involved in
    making important decisions for people with decision-making disabilities
    (Tait and Carney, 1994). Experts in the delivery of disability services
    are more likely to insist on "evaluation of .social capability.by qualified
    experts" (UN Declaration on the Rights of Mentally Retarded Persons, 1971
    para 7) in keeping with the principles of least restriction, maximisation
    of self development and community participation. It is important to consider
    the benefits of the tribunal approach compared to the expensive court-based
    system.

    Conclusion

    It is dangerous for
    decisions to be made justifying sterilisation on grounds that are dismissive
    of human rights and anti-discrimination principles when the decision is
    entirely related to characteristics of being female and having an intellectual
    disability. Unlawful sterilisation is a breach of human rights (Hastings,
    1998) but the trend in lawful sterilisation as currently exists in Australia
    raises equally important questions and a need for further debate.

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