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Page 1 of 15Moving Forward and Gaining Ground: The Sterilisation ofWomen and Girls with Disabilities in Australia© Paper w...
Page 2 of 15The right to bodily integrity and the right of a woman to make her own reproductive choicesis enshrined in a n...
Page 3 of 15The practice of forced sterilisation is part of a broader pattern of denial of human andreproductive rights of...
Page 4 of 15which must fall to the responsibility of her mother because Angela cannot providefor herself….. the operation ...
Page 5 of 153. Incapacity for parenthood – addresses widely held attitudes that disabled womencannot be effective parents ...
Page 6 of 15relationship.”.... It is however well documented that disabled children are particularlyvulnerable to sexual a...
Page 7 of 15Crucially, the voices of the disabled women and girls who have been the subject of thesejudgements, laws and d...
Page 8 of 15In 1992 in a case now known as Marions Case17, an application was made to the HighCourt of Australia in relati...
Page 9 of 15be sterilised in Australia,20and b) ‘unrecorded and unauthorised non-therapeuticsterilisations of young women ...
Page 10 of 15 persistence, international human rights mechanisms, the virtual world, strategic alliances, getting our...
Page 11 of 15CEDAW in 2010); in the Human Rights Council Universal Periodic Review of2011; andnow from the Committee on th...
Page 12 of 15We have a productive relationship with the Global Campaign to End Torture in HealthCare23, which has now prio...
Page 13 of 15We are making progress. For example in the Australian Government’s recent review of thenational Family Violen...
Page 14 of 15know, WWDA’s website is a collection of resource materials from around the world, andmaking these resources a...
Page 15 of 15We have been successful in having the issue of forced sterilisation included as a priorityfor action in the A...
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  1. 1. Page 1 of 15Moving Forward and Gaining Ground: The Sterilisation ofWomen and Girls with Disabilities in Australia© Paper written by Carolyn Frohmader, and adapted for presentation and delivered by Christina Ryan onbehalf of Women With Disabilities Australia (WWDA) to the International Conference ‘Challenges in thenew millennium for women with disabilities’, Madrid, 27th – 29th June 2012. Copyright WWDA, 2012.Bella is 34 years old. Without her knowledge or consent, she became the victim of forcedsterilisation at the age of 12 when her parents took her to hospital for what they told herwas an operation to have her appendix removed. Nine years later, during a routine pelvicexam, Bella was told it was her uterus, not her appendix that had been removed. Thirteenyears on from her discovery, Bella’s grief and anger are still raw. The trust she had in herparents and hospital staff was violated. “If they’d told the truth and asked me, I would haveshouted ‘No!’” “My sterilisation makes me feel I’m less of a woman when I have sexbecause I’m not normal down there,” says Bella. “When I see other mums holding theirbabies, I look away and cry because I won’t ever know that happiness.” (marie claire)Over a decade ago it was stories like Bella’s that initiated, Women with DisabilitiesAustralia’s campaign to address the issues of forced sterilisation and reproductive rights ofwomen and girls with disabilities.Women with Disabilities Australia, known by our acronym ‘WWDA’ or widda is a nationalNGO representing more than 2 million women and girls with disabilities in Australia.WWDA is a cross disability organisation, so all women with disabilities are welcome to bemembers. There is no distinction about types of disability.Our work is grounded in a human rights framework, linking gender and disability issues tocivil, political, economic, social and cultural rights. We promote the rights of women withdisabilities to freedom from violence, exploitation and abuse and to freedom from torture orcruel, inhuman or degrading treatment.For more than a decade, WWDA has been at the forefront of what is now a globalcampaign against the practice of forced sterilisation of women and girls. Our campaign isstarting to yield results, with the issue now receiving responses from the machinery of theUnited Nations, other NGO’s, advocates, the media, researchers and politicians.Today I will trace some of the features of WWDA’s campaign and discuss some of thecritical issues associated with forced sterilisation as a human rights issue. We will look atstrategies employed by WWDA to advance our efforts to promote the sexual andreproductive rights of disabled women and girls, on an equal basis with other women andgirls.What do we mean when we talk about forced sterilisation of disabled women andgirls?Systemic prejudice and discrimination against women and girls with disabilities continuesto result in widespread denial of their right to experience their sexuality, have sexualrelationships and found and maintain families.
  2. 2. Page 2 of 15The right to bodily integrity and the right of a woman to make her own reproductive choicesis enshrined in a number of international human rights instruments.1However, throughoutthe world, an alarming number of women and girls with disabilities have been, andcontinue to be, denied these rights through the practice of forced and coercedsterilization.2Forced sterilisation refers to medical procedures which permanently remove an individual’sability to reproduce (LD). It occurs when a person is sterilized without her knowledge, orafter she has expressly refused the procedure, or when she is not given an opportunity toconsent.Coerced sterilization occurs when financial or other incentives, misinformation, orintimidation tactics are used to compel an individual to undergo the procedure. Womenand girls with disabilities are particularly vulnerable to forced sterilizations performed underthe auspices of legitimate medical care or with the consent of others in their name. (interBriefing paper).The forced sterilisation of disabled women and girls is an act of unnecessary anddehumanising violence,3a form of social control, and a violation of the right to be free fromtorture and other cruel, inhuman or degrading treatment.4Sterilisation disproportionatelyaffects women and girls and is clearly a gendered issue. All of the cases that have come tothe attention of relevant authorities in Australia have involved the sterilisation of girls withintellectual disabilities (B&G).There have been no instances in Australia where an authorisation to sterilise has beensought for children without disabilities in the absence of a threat to life or health.Why are women and girls with disabilities still being sterilised?Globally, forced sterilization is performed on young girls and women with disabilities forvarious purposes, including eugenics-based practices of population control, menstrualmanagement and personal care, and pregnancy prevention (including pregnancy resultingfrom sexual abuse) (IBP).51See for example: UN General Assembly, Convention on the Rights of Persons with Disabilities, 24 January 2007, A/RES/61/106, [Art.23]; UN GeneralAssembly, International Covenant on Civil and Political Rights, 16 December 1966, 2200A (XXI), [Art.7, 17]; UN General Assembly, International Covenant onEconomic, Social and Cultural Rights, 16 December 1966, 2200A (XXI), [Art.10]; UN General Assembly, Convention on the Elimination of All Forms ofDiscrimination Against Women, 18 December 1979, 34/180, [Art.16]; United Nations, The Beijing Declaration and the Platform for Action: Fourth WorldConference on Women, Beijing, China, 4-15 September 1995, A/CONF.177/20/Add.1; [paras.94-96].2See for example: Brady, S., Briton, J., & Grover, S. (2001) The Sterilisation of Girls and Young Women in Australia: Issues and Progress. A reportcommissioned by the Federal Sex Discrimination Commissioner and the Disability Discrimination Commissioner; Human Rights and Equal OpportunityCommission, Sydney, Australia. Available online at: www.wwda.org.au/brady2.htm; Brady, S. (2001) The sterilisation of girls and young women withintellectual disabilities in Australia: An audit of Family Court and Guardianship Tribunal cases between 1992-1998. Available online at:www.wwda.org.au/brady2001.htm; Ana Peláez Narváez, Beatriz Martínez Ríos, and Mercé Leonhardt Gallego, Maternidad y Discapacidad [available inSpanish] (Comité Representante de Personas con Descapacidad, Barclays Fundación, Ediciones Cinca, 2009), p.65; Human Rights Watch interview with Dr.Lalitha Joshi, gynecologist and President of the Down’s Syndrome Association, Kathmandu, Nepal, March 30, 2011; Human Rights Watch (2011), FuturesStolen: Barriers to Education for Children with Disabilities in Nepal. Available online at: http://www.hrw.org/reports/2011/08/24/futures-stolen.3FIGO (International Federation of Gynecology and Obstetrics), Contraceptive Sterilization Guidelines, Recommendation 5. Aavailable at:http://www.figo.org/files/figo-corp/FIGO%20-%20Female%20contraceptive%20sterilization.pdf.4UN Human Rights Council, Promotion and protection of all human rights, civil, political, economic, social and cultural rights, including the right todevelopment : report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Manfred Nowak, 15 January2008, A/HRC/7/3, [paras.38, 39]. See also UN Committee Against Torture (CAT Committee), General Comment No. 2: Implementation of Article 2 by StatesParties, 24 January 2008, CAT/C/GC/2 [para.22]; UN General Assembly, Rome Statute of the International Criminal Court (last amended January 2002), 17 July1998, A/CONF. 183/9 [Article 7(1)(g)].5Brady, S., Briton, J., & Grover, S. (2001), OpCit.
  3. 3. Page 3 of 15The practice of forced sterilisation is part of a broader pattern of denial of human andreproductive rights of disabled women and girls which also includes systematic exclusionfrom appropriate reproductive health care and sexual health screening, limitedcontraceptive choices, a focus on menstrual suppression, poorly managed pregnancy andbirth, selective or coerced abortion and the denial of the right to parent (Steinstra andGucciardi 2002; Asch, 1999, LD). These practices are framed within traditional socialattitudes that characterize disability as a personal tragedy, a burden and/or a matter formedical management and rehabilitation. (LD)The reasons used to justify forced sterilisations fall into four broad categories, all couchedas being in the “best interests” of women and girls with disabilities.1. The genetic / eugenic argument2. For the good of the state, community or family3. Incapacity for parenthood4. Prevention of sexual abuse1. the Genetic/Eugenic argument - is based on the fear that disabled women willre/produce children with genetic defects.For example, in the case of H in 2004, the Family Court of Australia authorised thesterilisation of a 12 year old intellectually disabled girl with Tuberous sclerosis, agenetic disorder with a 50% inheritance risk factor. Although one out of two peopleborn with tuberous sclerosis will not be apparently affected, the Court acceptedevidence from a medical specialist that sterilisation was in the best interests of Hbecause (quote) “…….. As a by-product of an absence of her uterus H will neverbecome pregnant. Given the genetic nature of her disorder and the 50% inheritancerisk thereof, this would in my view be of great benefit to H.” (end quote)This reasoning is clearly grounded in eugenic ideology and the views that society stillholds of disability as a personal tragedy or a medical problem. This type of thinking has thepotential for profound and alarming consequences for girls and women with disabilities (B& G)There is, however, clear evidence that the causes of impairment are overwhelmingly socialand environmental (including war, poverty and environmental degradation) and only asmall number are related to genetic causes.Sterilisation is not a treatment of choice for non-disabled women and girls with geneticdisorders.2. For the good of the state, community or family – is about the burden that disabledwomen and girls and their offspring place on the resources and services funded by thestate and provided by the community. A related argument is the added burden of care thatmenstrual and contraceptive management places on families and carers.In a recent case, the Family Court of Australia authorised the sterilisation of an 11year old girl with Rett Syndrome. The application was made by the girl’s mother toprevent menstruation. No independent lawyer was appointed to advocate for thegirl, as the judge determined it would be of ‘no benefit’. In accepting “withouthesitation” the evidence of Dr T, an Obsterician and Gynaecologist, the judge said:“Undoubtedly and certainly of significant relevance is that there are hygiene issues
  4. 4. Page 4 of 15which must fall to the responsibility of her mother because Angela cannot providefor herself….. the operation would certainly be a social improvement for Angela’smother which in itself must improve the quality of Angela’s life.”6The ‘burden’ of parents having to deal with menstrual management of their disableddaughters is often used as a valid justification when Australian Courts authorise thesterilisation of disabled females - even before the onset of puberty.7For example, inauthorising the sterilisation of a 12 year old girl in 2004, the Court accepted medical‘evidence’ that caring for her was an “onerous responsibility” for her parents and thatsterilisation would make the task of caring for her “somewhat less onerous”, including thatit would “make it easier for her carers if they had one less medication to administer.” 8Faced with the prospect of added personal care tasks in dealing with menstruation andwith limited availability of reproductive health and training services including for menstrualmanagement, families see sterilisation as their only option. The denial of a young woman’srights through the performance of an irreversible medical procedure that has long termphysical and psychological health risks is wrongly seen as the most appropriate solution tothe social problem of lack of services and support.Evidence suggests that menstrual and contraceptive concerns, even for women and girlswith high support needs, can be successfully met with approaches normally taken withnon-disabled women. (LD) Indeed WWDA’s research has found that when parents andcarers are given appropriate support and resources the issue of sterilisation loses potency.Medical professionals are often very influential in the decision to sterilise disabled womenand girls. Courts and parents seem to value medical opinion above all else – and in manycases elevate opinions and assertions to the status of fact - reducing the ‘best interests’ ofdisabled women and girls to the ‘best [and easiest] ways’ of controlling and managing theirbodies (LD,MF, Brady9). Yet these judgements are made from a particular perspectivewhich we must vigorously challenge – that the woman or girl with a disability is essentiallythe sum of her biology or her psychology and her human right to bodily integrity is lessimportant than controlling her body and her behaviour. (MF, LD)A diagnosis of intellectual disability does not constitute a clinical reason for sterilisation.The onset of menstruation is the same in girls with and without intellectual disability, andgirls with intellectual disability present with the same types of common menstrual problemsas the rest of the young female population. (Brady & Grover). Arguments for elimination ofmenstruation in girls and young women with disabilities are primarily about social taboosand the discomfort of carers in dealing with menstrual blood. (in Brady & Grover).Sterilisation is not a treatment of choice for non-disabled females who experiencemenstrual problems. Like their non-disabled counterparts, disabled women and girls havethe right to bodily integrity, the right to procreate, the right to sexual pleasure andexpression, the right for their bodies to develop in a natural way, and the right to beparents (IDRS 2006).6Re: Angela [2010] FamCA 98 (16 February 2010)7See: Re S8Re H9Brady, S. (2001) The sterilisation of girls and young women with intellectual disabilities in Australia: An audit of Family Court and Guardianship Tribunal casesbetween 1992-1998. At: http://www.hreoc.gov.au/disability_rights/sterilisation/disability_with_attitude.html
  5. 5. Page 5 of 153. Incapacity for parenthood – addresses widely held attitudes that disabled womencannot be effective parents and prevents pregnancy in disabled women, particularlywomen with intellectual disabilities. Women with disabilities are typically seen as child-like,asexual or over-sexed, dependent, incompetent, passive, and genderless10and thereforeconsidered inadequate for the ‘nurturing, reproductive roles considered appropriate forwomen’.11Intellectual disability is mistakenly seen as prima facie evidence of likelyparental incapacity or risk of harm to the child.12Such incapacity is automatically deemedto be an insurmountable deficiency in the parent.Incapacity is often used as a justification for Court authorisation of sterilisation of disabledfemales with no consideration given to the possibility of capacity evolving over time. Forexample:"Those who are severely intellectually disabled remain so for the rest of their lives".(re S, 12 years old)Or“There is no prospect that S will ever show any improvement in her already severelyretarded mental state.” (Re S, 12 years old)Views such as these fail to acknowledge that ‘incapacity’ can often be a function of theenvironment and a lack of support for the individual concerned.There is ample evidence that many disabled women successfully parent happy children.There is no clear relationship between competence or intelligence and good parenting – infact, more than six decades of research has demonstrated that intellectual disability is anunreliable predictor of parenting performance (in WWDA 2009).Like their non-disabled counterparts, women and girls with disabilities have a right to retaintheir fertility on an equal basis with others. Women with disabilities have a right to ‘found afamily’, to experience sexual relationships; to experience parenthood; to decide on thenumber and spacing of their children and to have access to the information, education andmeans to exercise these rights which are expressed in a number of international humanrights instruments, and particularly in the UN Convention on the Rights of Persons withDisabilities.4. Prevention of sexual abuse - argues that Sterilisation protects a woman from sexualabuse and the consequences of abuse. (Basser Marks). Indeed, vulnerability to sexualabuse is a major theme in many of the applications for court authorisation to sterilisedisabled women and girls.13 14Inappropriate behaviour and good looks is considered amajor determinant of sexual activity or abuse (Brady Dis Att).In the case of Katie, prevention of sexual abuse was part of the rationale for theauthorisation of Katie being sterilised at the aged of 16: quote “It is highly unlikely thatKatie will ever have the capacity to understand and voluntarily enter into a sexual10(Prilleltensky 2003, Waxman 1999, Collins 1999, McKeever et al 2003, Smeltzer 2007, McKay-Moffat 2007, Radcliffe 2008)11(in Collins 1999)12(IASSID 2008)13Between: L and Gm Applicants and Mm Respondent and the Director-General Department of Family Services and Aboriginal and Islander AffairsRespondent/Intervener [1993] FamCA 124; (1994) FLC 92-449 17 Fam Lr 357 Family Law (26 November 1993)14Re Elizabeth
  6. 6. Page 6 of 15relationship.”.... It is however well documented that disabled children are particularlyvulnerable to sexual abuse and Katie is quite an attractive girl." End quote.In another case where the Court authorised the sterilisation of a 14 year old girl prior to theonset of menstruation, the judge stated: “it is unlikely she will have any form of relationshipinvolving sexual intercourse. She could, of course, be the victim of a sexual assault andwith her normal physical development and attractive looks that cannot be discounted.”15Research has demonstrated that rather than protecting against sexual abuse, forcedsterilisation can increase a disabled woman’s vulnerability (Sobsey & Doe 1991).We already know that sexual abuse of women and girls with disabilities occurs at very highrates. A young woman who has been sterilised is less likely to be taught about sexuality orsexual abuse because she cannot become pregnant. Sterilisation is quicker, easier andcheaper than sex education.Sterilisation will never overcome vulnerability to sexual abuse. Sexual assault is a problemfor all young women, including young women with intellectual disabilities and itdemonstrates the need for targeted educational, protective behaviour, and violenceprevention programs. Women and girls with disabilities, like all women and girls, have aright to live free from violence, abuse, exploitation and neglect.The reasons used to justify forced sterilisations are often couched in the language of beingin the “best interests” of the disabled female. In making judgements about best interests itis crucial that we are clear about whose best interests are really at stake. Are bestinterests judged according to human rights principles, or is it the best compromisebetween the competing interests of parents, carers, service providers and policy makers.To determine best interest for women and girls with disabilities we must focus on the factthat a person will be subjected to an irreversible medical procedure with lifelongconsequences without her informed consent (LD MF)The fact that a procedure may be ‘authorised’ or ‘lawful’ does not change the reality that awoman with disability, often a very young woman, undergoes a medical procedure toremove non-diseased parts of her body which are essential to her ongoing health. Thelong-term negative social and psychological impacts on women with disabilities aresomehow deemed insignificant.This blatant disregard for women and girls with disabilities is evident in the cases that haveproceeded to legal judgment in Australia, where, the opinion of the medical specialist isauthoritative and sterilisation is characterised as a simple and common procedure. It isportrayed as inconsequential and of minimum risk.In a social sense it offers a final solution to a myriad of problems potentially encounteredbecause of disability.16The social and psychological effects on the disabled female are notconsidered relevant. For example:“There is unlikely to be any psychological impact of the procedure on H as she hasno understanding of the nature of the procedure.” (re H)15Re A Teenager16Brady, Op Cit.
  7. 7. Page 7 of 15Crucially, the voices of the disabled women and girls who have been the subject of thesejudgements, laws and debates, have not been heard.WWDA ensures that women with disabilities are given the right and the opportunity tospeak their history and have their voices heard. In stark contrast to the views of medicalspecialists and judges, WWDA members have spoken about the long-term negative socialand psychological impact of being sterilised. They have spoken about it as a life sentence,as loss and betrayal, and as a violation of their right to choose what happens to theirbodies.Women have said:“It has resulted in loss of my identity as a woman, as a sexual being.”“I worry about the future health effects like osteoporosis and other problems.”“I haven’t had the chance to grieve the loss of a part of me that should have beenmine to choose whether I keep it or not”.“I feel upset because I can’t have children. I feel I should have been able to makethe decision.”“I have been denied the same joys and aspirations as other women.”“The psychological effects are huge – it takes away your feelings of womanhood.”“For me it is about living with loss.”“I was sterilised at 17. Someone else made the decision for me. I didnt objectbecause I had been led to believe that people with disabilities were worthless andthat they were a burden on people and society. I felt that if I produced a child with adisability I would be producing a "bad” person.”“I was sterilised at the age of 18 without my consent. I still feel devastated by whathappened because I will never be able to have children.”"After trying to have a baby for a long time I finally found out I had been sterilisedwhen I was 14 living in an institution."The voices and stories of women with disabilities who have been sterilised carry themessage that we must listen to women and learn from them so that healing can take placefor those already affected, and safeguards can be put in place to prevent others beingdenied their human rights (MF).WWDA’s Campaign – Gaining GroundSterilisation has been the subject of debate in Australia since it became clear that womenwith disabilities were being sterilised without their consent and in many cases without theirknowledge. It was apparent that this was happening with the informal consent of family,carers or doctors and without public scrutiny or accountability (LD MF).
  8. 8. Page 8 of 15In 1992 in a case now known as Marions Case17, an application was made to the HighCourt of Australia in relation to a teenage girl with intellectual disability. The applicationwas for a non-therapeutic surgical sterilisation in order to manage menstruation andprevent pregnancy.The High Court found that fundamental questions of human rights such as the right toreproduce should be decided by the courts not by parents, carers or medical practitioners.While this decision supported the rights of people with disabilities and has assumedsymbolic importance, subsequent judicial decisions and social practices have failed to givefull effect to the promise of Marions case (Jones and Basser Marks 2001).In reality forced sterilisation in Australia has remained mired in an ongoing legalisticdebate about who can authorise it, for whom, under what circumstances and within whichjurisdiction. The main thrust of public policy in the area has focused on ad hocdevelopment of mechanisms in an attempt to ‘minimise the risk of unauthorisedsterilisations occurring’18.Fundamentally, there has been no rights based debate about forced sterilisation ofdisabled women and girls (LD).In 2001, WWDA undertook a national research project which was initially titled‘Sterilisation and Reproductive Rights of Women and Girls with Disabilities’. Howevergovernment funding was approved only when the title of the project was changed to‘Sterilisation and Reproductive Health of Women and Girls with Disabilities’. This singleword difference speaks volumes about the underlying thinking in the national approach toreproductive issues for disabled women and girls in Australia.The project reviewed international and national developments in the field and integratedthem with the personal experience and perspectives of women and girls with disabilitieswho have experienced sterilisation and other denials of their rights to reproductivefreedom.The project report ‘Moving Forward’ recommended,19the banning of all sterilisations ofgirls under the age of 18 years and the prohibition of sterilisation of adults in the absenceof informed consent, except in circumstances where there is a serious threat to health orlife.Successive Australian Governments failed to respond to any of the recommendations inWWDA’s report. Instead the Australian Government pushed ahead with a proposal todevelop legislation aimed at regulating the authorisation of sterilisation of minors with a‘decision-making disability’ rather than prohibiting it.The Government abandoned this work in 2008, declaring that ‘there would be limitedbenefit’ and advised WWDA that it had no intention of pursuing the issue of reform anyfurther (McClelland). This was despite conceding that: a) girls with disabilities continue to17(Secretary, Department of Health and Community Services (NT) v. JWB and SMB)18Standing Committee of Attorneys-General (SCAG) (2004) Issues Paper on the Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability.Available online at: www.wwda.org.au/scagpap1.htm19The report also outlined a program of reconciliation; co-ordinated legislative and policy development; information, support and service models; consentconsiderations; approaches to reproductive health care and education; and data collection.
  9. 9. Page 9 of 15be sterilised in Australia,20and b) ‘unrecorded and unauthorised non-therapeuticsterilisations of young women with intellectual disabilities [are] being undertaken’.21The Australian Government does not have a coherent national approach to sterilisation ofwomen and girls with disabilities. Instead of developing universal legislation which protectstheir rights it has consistently taken the view that there are instances in which sterilisationcan and should be authorised. In its 2009 Report to the UN on the Convention on theRights of the Child22the Australian government said:A blanket prohibition on the sterilisation of children could lead to negativeconsequences for some individuals. Applications for sterilisation are made in avariety of circumstances.This approach has several extremely negative consequences for disabled women and girlsin Australia. It clearly undermines their fundamental rights; it takes no account of thesocial, cultural and economic conditions which drive the sterilisation agenda; it takes noaccount of the long-term physical and psychological impacts of sterilisation; it framessterilisation as a medical/behavioural issue rather than an issue of human rights; andeffectively makes authorisation easier to obtain.This approach relegates the voice of disabled women and girls to the margins of thedebate.In response to the Australian Government’s apparent indifference to the issue, WWDA hasreacted by intensifying our campaign, and pushing for domestic and international reformsto promote the sexual and reproductive rights of disabled women and girls. We have calledon Governments: To develop and enact universal legislation; To address the cultural, social and economic factors driving the sterilisation agenda; To commit resources to assist women and girls with disabilities and their familiesand carers to access reproductive health care; and, To create the social context in which all women and girls are valued and respected.Our campaign is starting to yield results, with the issue now receiving internationalattention from the United Nations, other NGO’s, advocates, the media, researchers andpoliticians.Importantly, it is also empowering more women to come forward, to speak out about theirexperiences, to gain strength, to recognise their own needs for personal autonomy, andperhaps most importantly, to develop a sense of personal worth.Key Strategies and Outcomes of WWDA’s CampaignWWDA has used:20Australian Government (2009) Response to the UNESCAP Questionnaire on the implementation of the outcome of the Fourth World Conference onWomen (Beijing 1995). Available online at:www.unescap.org/ESID/GAD/Issues/Beijing+15/Responds_to_Questionnaire/Australia.pdf [See page 14].21Australian Government (2006) Sterilisation of Women and Young Girls with an Intellectual Disability - Report to the Senate. Tabled by the Minister forFamily and Community Services and the Minister Assisting the Prime Minister on the Status of Women, December 6, 2000. Available online at:www.wwda.org.au/senate.htm22Australian Government (2008) Fourth Report under the Convention on the Rights of the Child: Australia, October 2008, 159, p31. Accessed online August2009 at: http://www.ag.gov.au/www/agd/agd.nsf/Page/Humanrightsandantidiscrimination_ReportsundertheConventionontheRightsoftheChild
  10. 10. Page 10 of 15 persistence, international human rights mechanisms, the virtual world, strategic alliances, getting our voices heard, and safe spaces, we have built on our work, and we have monitored developments.1. Persistence - is one of our most important strategies. We have never wavered orgiven up on our campaign to stop forced sterilisation. We have maintained a clearand consistent message through times of change in the political climate of ourcountry and during times of uncertainty about WWDA’s future. We have notcompromised on our position and we have stubbornly refused to accept ourGovernment’s indifference and inaction on the issue.In difficult times, we have found different ways of working and looked for differentstrategies to get our message out. As the majority of our funding comes from government,there have been times, when we have taken risks by challenging their inaction on theissue. We spoke out publicly even though we were afraid of losing our governmentfunding. But we considered it important to send our message widely and to gain support ofwomen with disabilities and their allies. The Government now understands that WWDA isindependent and driven by the voice of our members.Regardless of the substantive issue, gaining public recognition of the rights of women withdisabilities has always been high on our agenda. And we have survived. Our message is,never, ever give up. Persistence is critical.2. A second strategy was to use international human rights mechanismsWWDA has educated ourselves about international human rights mechanisms, themachinery of the United Nations, and Australia’s reporting obligations under thoseinstruments it has ratified. We are still learning.Using international human rights mechanisms, and getting our work recognised within theUN, has been critical to our success. We have contributed to the development ofAustralia’s NGO Shadow Reports, and have fought to have issues which concern disabledwomen and girls given prominence in those Reports. We have provided the treatymonitoring bodies with draft recommendations for their Concluding Observations onAustralia’s performance.In 2010, we wrote our own NGO Shadow Report to the CEDAW Committee and later thatyear, attended CEDAW 46 as part of the Australian NGO delegation. We were able tospeak directly to the Committee about forced sterilisation, violence against women withdisabilities and other issues of concern. We did this with IWRAW’s assistance.Our sustained advocacy work with UN monitoring and reporting mechanisms has hadsignificant impact and outcomes. WWDA’s key message – that the Australian Governmentenact national legislation – has now been consistently articulated by the United Nations tothe Australian Government, in the Concluding Observations and Recommendations on
  11. 11. Page 11 of 15CEDAW in 2010); in the Human Rights Council Universal Periodic Review of2011; andnow from the Committee on the Rights of the Child in 2012.We have also used other UN mechanisms to advance our campaign. In 2010, we lodged aformal communication with the Commission on the Status of Women (CSW). In 2011, wemade use of the UN Special Procedures, and lodged a formal complaint with four of theUnited Nations Special Rapporteurs, requesting urgent intervention from each of themsimultaneously. This was an important step, because the Australian Government wascompelled to formally respond – and that process is now occurring.We have also broken ground by using mainstream fora at the United Nations, in our effortto have forced sterilisation of disabled women and girls taken up as a women’s rightsissue, rather than have it viewed solely as a ‘disability’ issue. This year we co-sponsored aHigh level Panel on Women and Girls with Disabilities at CSW 56 where we spoke aboutthe issue and demanded an end to the practice.WWDA still has much to learn about how to best use the machinery of the United Nationsto advance our cause. But our efforts are paying off, and it is becoming increasinglydifficult for our Government to ignore the strong recommendations coming from the UN’svarious organs.3. Maximising the virtual worldIt is unlikely we would have been able to advance our campaign without the Internet.We have spent more than 15 years building extensive email distribution lists, and usedthem to disseminate information about our campaign, and to seek support. We are oftensurprised at how far how our work reaches. Importantly, the internet has also been anaffordable option for WWDA as we do not have the funding to be physically present at thevarious national and international fora to which we are invited.We have built up our website and make sure that our publications are free of charge andaccessible to the broadest possible audience.We now have a presence on Facebook which is a useful strategy for getting informationout quickly and keeping women with disabilities informed of progress. Importantly,information on our Facebook site about forced sterilisation and our campaign has resultedin a number of women with disabilities contacting WWDA to share their stories of forcedand coerced sterilisation, and to seek support from others.4. Forming Strategic AlliancesForming strategic alliances and establishing collaborative relationships is crucial. We havebuilt a close working relationship with the Australian Human Rights Commission.Both our national Sex Discrimination Commissioner and our national DisabilityDiscrimination Commissioner have spoken publicly in support of our position and haveactively taken up the issue with politicians and policy makers. We have also sought outsympathetic politicians and media personnel to work with as a way of increasing ourmomentum and putting pressure on governments to undertake reforms.
  12. 12. Page 12 of 15We have a productive relationship with the Global Campaign to End Torture in HealthCare23, which has now prioritised forced sterilisation as one of its three key action areas.WWDA has been a member of the Global Campaign’s Working Group to Stop Forced andCoerced Sterilisation.As part of this work, WWDA collaborated with the Open Society Foundations, HumanRights Watch and the International Disability Alliance to publish an International BriefingPaper on the Sterilisation of Women and Girls with Disabilities. The Paper outlinesinternational human rights standards that prohibit forced sterilisation of women and girlswith disabilities and offers several recommendations for improving laws, policies, andprofessional guidelines governing sterilisation practices. Being an active part of this globalcampaign has raised the profile of the issue and helped to build the evidence base.Importantly, it has given WWDA a sense of solidarity and affirmed that we are not alone inour fight.Our alliances with other international networks, such as the International Network ofWomen and Girls with Disabilities (INWWD) have been vital in keeping our campaign onthe agenda as well as providing us with a mechanism to seek advice and support forelements of our work. This network is now developing position statements and establishingconnections within the United Nations.Supporting the work of our sister organisations and networks, such as the EuropeanDisability Forum Women’s Committee, the International Disability Alliance, DisabledPeople’s International, DAWN Canada, and other emerging groups of women withdisabilities, has also been an important part of our efforts to advance the sexual andreproductive rights of women and girls with disabilities. This collective global identityempowers women with disabilities to speak out about our experiences together and takeaction to realise our rights and improve our lives as a group.5. Maximising opportunities to have our voice heardWWDA has sought opportunities to speak out about the denial of sexual and reproductiverights for women and girls with disabilities. We are somewhat limited – we are after all, atiny organisation of only two paid staff. However, the activism and goodwill of our membershelps us to maximise opportunities.We speak on the issue wherever we can; we meet with policy makers and politicians; wehave questions asked of our Government in the national Parliament. We provide input intothe work of other organisations. We write letters and emails and copy them to anybody wethink might be influential. We are also represented on relevant advisory structures andfora, such as our Government’s National NGO Forum on Human Rights, and the NationalViolence Prevention Advisory Panel.We have worked hard to ensure that the issue of forced sterilisation is recognised as aform of violence, and that it is integrated into violence prevention policies and programs.We have established relationships with NGO’s in the women’s and violence preventionsectors and now have representation on some of their Management Committees. Inreality, we have had to work just as hard arguing our case within these sectors, who havetraditionally viewed our issues as belonging in the disability area alone.23Co-ordinated by the Open Society Foundations
  13. 13. Page 13 of 15We are making progress. For example in the Australian Government’s recent review of thenational Family Violence Legislation for the first time ever, forced sterilisation was definedas a form of violence against women. This significant development is directly attributableto WWDA’s work.6. Creating safe spacesFor years, women with disabilities have had to put up with ‘experts’ speaking on our behalfand making decisions about us, without us. For WWDA, creating safe spaces for womenwith disabilities to be able to speak out and work collectively on issues has beenparamount. WWDA’s Project in 2001, was the beginning of our campaign to empowerwomen to reclaim this as their issue and reclaim some control over their lives.The importance of creating safe and supportive environments for women with disabilitiesto share their experiences cannot be overstated. Many of our members have spoken outabout their experiences of forced and coerced sterilisation and other infringements on theirhuman rights, only if their identity is not revealed publicly. Fear of recrimination andretribution, along with feelings of embarrassment, shame and guilt remain very real for thewomen concerned.Creating safe spaces to talk is also important in the context of the media and publicdomain. We have learned the hard way that we need to be very careful about how we usethe media, and indeed, how the media uses us.Several WWDA women, including myself and Carolyn Frohmader, have experienced verynegative responses following media appearances.In 2010 we spoke publicly about forced sterilisation in response to the reported case ofAngela, an 11 year old girl sterilised by authorisation of the Court. The backlash wereceived from members of the public, including from medical professionals as far away asthe UK, was frightening.We have learned to become careful about how we work with the media, and now weigh upwhat outcomes might be achieved from appearances. We have turned down many offersfrom sensationalist TV producers, who are eager to get a sound-bite for their program, buthave no interest in learning about the sensitivities involved. Recently we turned down twohigh rating current affairs programs as we were not confident that the issue would behandled sensitively or that the appearance would not result in more hate mail and threats.7. Continually building on our workSystemic advocacy can be a slow and arduous process. Results don’t come overnight andwe have learned to pick ourselves up, dust ourselves off, and press on with our work.Continually building on our work and maximising any opportunity to showcase and sharethat work, has been an integral part of our campaign. We are always looking for ways toimprove our knowledge base and often we have learned more from our mistakes than fromour successes.Over the past decade, we have built up our resources, publications, information andresearch on the sexual and reproductive rights of women and girls with disabilities. Ourwebsite has become an important repository for information on many issues of concern towomen with disabilities, including sexual and reproductive rights. As many of you will
  14. 14. Page 14 of 15know, WWDA’s website is a collection of resource materials from around the world, andmaking these resources available to the widest possible audience is important us all.8. Monitoring developmentsThrough our extensive networks we keep up with developments occurring in the field ofsexual and reproductive rights of women and girls with disabilities.For example, early in 2012, one of our members alerted us to draft Mental Healthlegislation in the state of Western Australia, which proposed that children with mentalhealth diagnoses (including disability) could be sterilised without Court authorisation.WWDA acted fast, writing to the Western Australian Government insisting that this sectionof the proposed Act be removed as it contravened many of the human rights instrumentswhich Australia has ratified, specifically that it violated disabled girls fundamental right tobodily integrity.We then publicised this, and sent copies of our letter to various UN officials. WWDA’saction yielded immediate results, with the issue reported internationally in various media,sections of the UN responded formally, the Australian Human Rights Commissionintervened, and finally, a concession from the Western Australian Government that thesection of the proposed Act would be withdrawn.WWDA also monitors the outcomes of other countries’ UN reporting processes,particularly where forced sterilisation is specifically mentioned, and uses thesedevelopments in our own work. This helps us to build the evidence base on thewidespread violations of the sexual and reproductive rights of women and girls withdisabilities, and importantly, places our work firmly in a globalised context.So where are we now and what does the future hold?Despite WWDA’s sustained campaign, the Australian Government still has not developednational legislation.However, there is no question that our work is gaining momentum and gaining ground.The issue of forced and coerced sterilisation of women and girls with disabilities, and thebroader issues of their sexual and reproductive rights, is now firmly back on the nationalagenda. And we have put it there.We are continuing to demand reform, and our calls for reform continue to be formallyendorsed by the United Nations. Just last week, the Committee on the Rights of the Childexpressed its ‘serious concern that the absence of legislation prohibiting sterilisation isdiscriminatory and in contravention of article 23(c) of the Convention on the Rights ofPersons with Disabilities.’The Committee urged the Australian Government to:‘enact non-discriminatory legislation that prohibits non-therapeutic sterilization of allchildren, regardless of disability’.WWDA believes it is now only a matter of time before this occurs. We are getting closerevery day.
  15. 15. Page 15 of 15We have been successful in having the issue of forced sterilisation included as a priorityfor action in the Australian Government’s national Human Rights Action Plan. We aregenerating media coverage and using our allies and supporters to maintain pressure onpoliticians and Government.We have convened a national Working Group on Forced Sterilisation, to progress ourcampaign and share the workload, and we continue to build relationships and networksinternationally to strengthen capacity for our work.Although our priority has always been the development of national legislation prohibitingthis form of violence against women and girls with disabilities, we are also working hard toensure that the issue is considered in the broader framework of sexual and reproductiverights. So our campaign also looks at the urgent need for our Governments:• to implement the recently adopted Guidelines on Female ContraceptiveSterilization, developed by the International Federation of Gynecology and Obstetrics(FIGO);• to provide redress to women and girls with disabilities who have been sterilisedwithout their consent, including the provision of financial compensation and an officialapology;• to commission and fund national research on women with disabilities’ right toreproductive freedom which addresses the incidence and long term effects offorced/coerced sterilisation and menstrual suppression practices for all women withdisabilities and,• to develop policies and services which assist women and girls with disabilities andtheir families and carers to access appropriate reproductive health care.We will keep you posted.ConclusionThe forced sterilisation of disabled women and girls is a grave violation of human rightsand medical ethics. It is an act of unnecessary and dehumanising violence, a form ofsocial control, and a violation of the right to be free from torture and other cruel, inhumanor degrading treatment or punishment. Perpetrators are seldom held accountable andwomen and girls with disabilities who have experienced this violent abuse of their rightsare rarely, if ever, able to obtain justice.Today we have analysed some of the critical issues of forced sterilisation as a humanrights issue. We have questioned why women and girls with disabilities are still beingsterilised, and have highlighted the discriminatory views, assumptions and behaviours thatunderpin this barbaric practice.Thank you for the opportunity to trace some of the key features of WWDA’s decade longcampaign to stop the forced and coerced sterilisation of women and girls with disabilitiesand to promote their sexual and reproductive rights. We are honoured to have been invitedto speak at this conference and would particularly like to thank our Spanish sisters forinviting us to be here and for making us so welcome.Thank you

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