Transcript SAMPLE PRESENTATION HEADING

FORCED STERILISATION:
CRITIQUING THE CRITIQUE
Café
Malcolm Parker
Discipline of Medical Ethics, Law & Prof Practice, School of
Medicine, UQ
Respondents
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Sheryl De Lacy
School of Nursing and Midwifery, Flinders U
•
Nicole Gerrand
School of Humanities and Social Science, U of Newcastle
•
Nikola Stepanov Discipline of Medical Ethics, Law & Prof Practice, School of
Medicine, UQ
M Parker. “Forced Sterilisation”: Clarifying and challenging
Intuitions and Models. (2013) 20 Journal of Law and Medicine
512-527.
Senate Community Affairs Committees:
“The involuntary or coerced sterilisation of people with disabilities in Australia”
Reporting date 24 April 2013. On 18 June 2013,the Senate granted an extension
of time for reporting until 17 July 2013.
TOR
 types, prevalence and recording of sterilisation and menstrual control treatments;
 access to sexual health and family planning services;
 adequacy of legal, regulatory and policy frameworks and practices across jurisdictions;
 processes to determine disabled people’s wishes, capacity to consent, and representation in
applications for sterilisation procedures in the absence of capacity;
 application of the 'best interest test' in relation to sterilisation and reproductive rights;
 impacts of sterilisation on disabled persons;
 Australia's compliance with its international obligations regarding sterilisation of people with disabilities;
 educational resources regarding consequences of sterilisation;
 factors leading to sterilisation requests by others for disabled persons.
Germany, US, Sweden (
1975)
 Sterilisation of intellectually disabled women, some with mild impairments
Australia
“(t)he sterilisation of mental defectives and of patients with a mental disease as a
condition of discharge from hospital. It concluded that a mental defect is often
inherited, mental defectives are prolific and sterilisation is a safe and simple
procedure. It called for a legislative imprimatur to permit sterilisation”.
Editorial, (1931) 2 Medical Journal of Australia 655-6.
2 justifications
1. Eugenic theme - benefit to society: still perceived as existing today
2. Individual benefit theme – best interests: remains a current consideration
1970s
 increasing attention to human rights & rights of disabled
people
Early 1980s
 government-commissioned reports advocate need for
reform and proper regulation.
Uncertainty concerning authority for consent to sterilisation
 Parents (good medical advice/best interest test)
 Re a Teenager & Re S
 Court (non-therapeutic procedure/basic human rights
 Re Jane & Re Elizabeth
Uncertainty resolved -
Re Marion appealed to HCA
 Welfare of children subject to provisions of Family Law Act
1975 (C’th)
 Parental consent where sterilisation is a “by-product” of
surgery to treat malfunction or disease
 Court authority necessary for “non-therapeutic” procedures
involving invasive and irreversible surgery.
Secretary, Department of Health and Community Services v JWB and SMB (1992) 175 CLR
218 (Marion’s Case).
BUT
1988–1995: only 1 of 11 cases did not authorise sterilisation
[Health Insurance Commission data claimed to show that at least 1045 women and
girls had been sterilised, attracting Medicare benefits]
1987-1997: 25 sterilisations authorised by the Family Court, State
Supreme Courts or Guardianship Boards (17 since Marion’s Case in
1992).
1992 - 1998: 28 authorisations and 8 rejections.
Statistics and individual case details:
 Family Court criticised for deserting its own rhetoric on rights of women and
girls, & reverting to an outdated and discredited model necessarily connecting
intellectual disability and sterilisation.
Criticism of extra-judicial and legally authorised sterilisation procedures
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the (masked) eugenic ground
the human rights/personal inviolability/invasive surgery grounds
the “last resort” and least intrusive alternative grounds
divergent/expedient interpretation of the best interest test
therapeutic/non-therapeutic distinction
emphasis on others’ interests eg burdens on parents and families
perception of burdensomeness/need for sterilisation, depends on lack of
adequate educational and social supports and the inability of courts to impose
duties on third parties
false to think sterilisation protects against sexual abuse
false that intellectual disabilities are fixed characteristics (“eternal children”)
independence privileged; dependence perceived as a burden on others
bias towards cognitive interpretations of intellectual capacity over alternative
expressions of preferences and wishes
Reports
1994
 Family Law Council, Sterilisation and Other Medical Procedures on Children: A Report to the AttorneyGeneral.
 Law Reform Commission of Western Australia, Report on consent to sterilisation of minors.
2000
 Commonwealth Department of Family and Community Services, Sterilisation of Women and Young
Girls with an Intellectual Disability - Report to Senate
2003
 Australian Standing Committee of Attorneys-General (SCAG) Working Group, Issues Paper on the
Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability
2012 - 2013
 Senate Community Affairs Committees: “The involuntary or coerced sterilisation of people with
disabilities in Australia” (current inquiry)
HUMAN RIGHTS
Disability Discrimination Commissioner (Graham Innes)
 urged the criminalisation of forced sterilisations of any adult without consent
and “for any child at all, apart from life-saving circumstances.''
Women with Disabilities Australia (July 2012)
Attorney-General should take immediate action to ensure the Federal Government complies with
recommendations from
 UN Committee on the Elimination of Discrimination against Women (2010)
 UN Committee on the Rights of the Child (2005 and 2012)
 UN Human Rights Council (2011)
to “enact national legislation prohibiting, except where there is a serious threat to life or health, the use of
sterilisation of girls, regardless of whether they have a disability, and of adult women with disabilities in the
absence of their fully informed and free consent” under the external affairs power.
UN recommendations / representative lobbying –
 forced sterilisation described as or associated with violence and/or torture
 forced sterilisation constitutes both gender and disability discrimination
CHALLENGES
1. Language
2. Eugenics
3. Models of disability
4. Last resort
5. Best interests
6. Therapeutic or non-therapeutic?
1. Language
Senate inquiry:
“The involuntary or coerced sterilisation of people with
disabilities in Australia”.
Innes:
criminalisation of forced sterilisations of any adult without
consent and for any child at all, apart from in life-saving
circumstances.
UN statements:
violence, torture and forced sterilisation
1. Language
 Force and coercion require a will that can be forced/coerced:
contingent
 Terms should not be generalised to entire population of disabled people
where question of sterilisation/contraception arises.
 Title of Senate inquiry, applied correctly, would mean that a number of
the disabled population would not be considered in its deliberations.
Violence/torture
 Stretched too far?
 Moral motivation historically based but acontextual
2. Eugenics
Conventional anti-eugenic view is strongly supported
 “Eugenic considerations should be outlawed absolutely”
 “(t)he Commission rejects arguments for sterilisation based on eugenic
considerations. The “eugenic argument" has long been outmoded.
 “The sterilization of a human being simply in order to prevent him or her from
becoming a parent is an extreme denial of that person's human rights”
BUT
 Eugenics is openly and routinely practised
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deciding not to reproduce when genetic risks known
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PGD
3. Models of disability
 Family Court employs essentialist/medical model of disability *
 disability fixed / dependence / cognitive capacity
 Extreme social model also has problems *
 all disability is caused by social factors / impairment will always be negatively
evaluated / subjective discomfort and experience
 Interactional model *
 acknowledges biological/experiential aspects of disability, interactions with external
factors (social support, discriminatory attitudes, cultural factors), & social
determinants of disability
 retains emphasis on inadequate social support / need for disabled people to adapt to
this / society remains a significant disabling influence
* Steele L, “Making sense of the Family Court’s decisions on the non-therapeutic sterilisation of girls with intellectual
disability” (2008) 22 Australian Journal of Family Law 1
3. Models of disability: responses to Steele
 We are all dependent but there are norms of performance
 norms of independence in basic functions necessary for society to operate
 levels of functioning below which dependence not constructed by social deficiencies
 avoid illusions that capacities of some disabled people can be effectively (socially)
normalised / that lives of many families can be anything but extremely difficult.
 limits to what can be expected of society
 always possible to argue social support for disability is inadequate
 reasonable balance between inclusion of disabled in dominant social framework and
interests of those who not disabled but affected by this inclusion
 cannot define dependence/independence completely in terms of social support.
 necessary connection between words and concepts - there will be things that certain
people will not be able to express wishes about in any way
4. Last resort
Marion majority definition of “last resort”:
 failure of alternative and less invasive procedures
 sterilisation authorised only where alternatives (oral, injectable or (now) implantable
contraception) are inadequate in terms of the child’s needs and capacities.
Consistent with intuition re surgery and its invasiveness, vis a vis other medical methods
Are the intuitions always coherent?
Overweight / obesity
 conventionally treated by diet / exercise / behavioural modification / drugs.
 current guidelines on morbid obesity - bariatric surgery may be utilised, “after nonsurgical options have failed”, ie as a last resort.
 But b surgery likely to become first line treatment in some cases
 relative safety of surgery
 recalcitrance of obesity - complex hormonal & biochemical interactions
 side-effects of many drugs
 surgery already the treatment of choice in many different conditions
4. Last resort
Contingency again: what is best in this case?
 In cases where both menstrual management and contraception are
important goals, choice may be between endometrial ablation and oral,
injectable or implantable contraception.
 What is the right choice here?
 Is the more invasive procedure the more “violating”?
 Medical management not necessarily everyone’s “last resort”
5. Best interests
 decisions should not be made in direct interests of parents/families
 critics have objected to the social factors as being too narrowly familyoriented
BUT
 majority of Family Court decisions have authorised medical procedure
 Marion court
 child’s best interests primary
 interests of others should be excluded, except as they bear on best
interests of child
 so interests of (particularly) primary care-givers, are relevant to
decision
5. Best interests
 best interests not confined to medical considerations
 despite social supports, major burdens will usually fall to families
 identity of “patient” is often indeterminate, eg posthumous conception;
elderly couples: the notion of “we”
 courts have attempted to provide solutions that take into account the
interests that ought to be considered
 needs of the individuals in the family, and those of the family as a
whole, are not separable, but admixed in complex ways
 problematizes idea of rights of individuals in this context
6. Therapeutic or non-therapeutic?
 Marion court
 treatment of dysfunction or disease (majority) contrasted to where
there is no such dysfunction, disease, deformity, condition
 High Court
 dividing line unclear
6. Therapeutic or non-therapeutic?
Challenge A
 vast literature on contestable definitions & boundaries of health & disease
 employment of least invasive approaches is relevant to management of both disease
states and non-diseases, wherever the line is drawn
 so - definition of procedures as non-therapeutic is unhelpfully rigid
Challenge B*
 not all non-therapeutic treatments have to be approved by courts or tribunals (bone
marrow donation, male circumcision, ear-piercing)
 therapeutic/non-therapeutic distinction fails to show why some treatments need court
approval and others do not
 better approach – use a list of treatments requiring approval, according to reversibility of
treatment, pain involved, benefits of treatment, & presence of conflicts of interest eg for
parents.
* C Stewart. In Kerridge, Lowe & Stewart. Ethics and Law for the Health Professions (4th ed) Federation Press. 2013 Ch 22 Children
596-7.
Conclusions
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Human right claims should always be interrogated
Language should be as descriptive/neutral as possible
Eugenics is a reality and is generally accepted
There are contingent limits to social interventions for disability
Family Court decisions are more contextual than alleged
Last resort intuitions and assumptions need questioning
Context is (almost) everything, eg violation is not proportional to
invasiveness
Precedents for indeterminacy of identity of “the patient”: recognised by
Fam Ct
Best interests of individual and family/carers complexly mixed
Focus on individual and individual’s rights not complete story
Therapeutic/non-therapeutic distinction not coherent or of use