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 The application was withdrawn prior to medical and non-medical reports being filed.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.
|
GUARDIANSHIP TRIBUNERAL |
|||||||
|
Reporter |
Support |
Oppose |
No rec* |
Total |
Support |
Oppose |
No rec* |
Total |
|
Medical |
77 |
3
|
16
|
96 |
47
|
NIL |
14
|
61
|
|
Non-Medical |
21
|
8 |
29
|
58 |
18 |
2 |
40 |
60 |
|
Total |
98 |
11 |
45 |
154 |
65 |
2 |
54 |
121 |
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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