Forced Sterilisation of Women and Girls with Disabilities

1. Forced Sterilisation of Women and Girls with Disabilities Presentation to Disability NGO forum at Association for Physically Challenged on 25 July 2012 WilleneHolness – Legal Resources Centre, Durban

2. Breakdown Background Law, policy and implementation • The LRC’s work on Sterilisation of Girls and Women with Disabilities • What Is Sterilisation? • Short documentary: they took my Choice Away • Women & Girls With Disabilities • Why Are Girls And Women With Disabilities Forcibly Sterilised? • What South African Law says about Sterilisation • Informed Consent • Your responsibilities: • as an NGO, • as carers, • in relation to providing advice to families and clients

3. LRC’s work on Gender rights • Strategic impact • Rights of sex workers, refugees, LGBTI, persons with disabilities and children • Gender based violence incl. Domestic Violence, Harassment, sexual abuse of children at school, harmful traditional practices • Maintenance • Right of access to health care • Right to housing, sanitation, basic services, education • Sterilisation: Women with HIV and Women and girls with Disabilities

4. Convention on Rights of PWD • Art 25 articulates that free and informed consent should be the basis for providing health care to persons with disabilities. • Art 12 affirms the right of persons with disabilities to recognition everywhere as persons before the law and to enjoy legal capacity on an equal basis with others, including access to the support they may require to exercise their legal capacity.

5. Art 23(1) of CRPD: • (a) right of all PWD who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognised; • (b) right of all PWD to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education are recognised, and the means necessary to enable them to exercise these rights are provided; • (c) PWD, including children, retain their fertility on an equal basis with others.

6. What is sterilisation? • Sterilisation: • a process or act that renders an individual incapable of sexual reproduction • Usually irreversible • Includes tubal ligation or hysterectomy

7. Movie: forced sterilisation They took my choice away

8. Tubal Ligation • Surgical sterilisation which • permanently prevents the transport of the egg to the uterus • by means of sealing the fallopian tubes is called tubal ligation, commonly called "having one's tubes tied." • considered permanent, • but surgical reversal can be performed in some cases.

9. Tubal ligation • Laparoscopic sterilization — a surgical procedure that is done in an operating room at a time other than after childbirth. General or regional (eg, spinal) anesthesia is usually recommended. During the procedure, a small incision is made near the belly button and in the lower abdomen and a telescope-like device (a laparoscope) is used to view the fallopian tubes. The physician uses rings or clips to close the fallopian tubes; alternately, the physician seals the tubes shut with heat. • Minilaparotomy — a surgical procedure done one to two days after childbirth. It is done in an operating room using general, regional, or local anesthesia. The physician makes a small incision (one to three inches) in the abdomen, then removes a section of the fallopian tubes on each side. In the postpartum period, the procedure does not lengthen the hospital stay. A tissue specimen is removed to ensure that the fallopian tubes have been completely cut. (most common after birth) • Hysteroscopic sterilization — Hysteroscopic sterilization is a procedure that may be done in the office or operating room using local anesthesia. The Essure® permanent birth control procedure uses a tiny coil mechanism, which is inserted through the cervix and uterus into the fallopian tubes .The Adiana® system sterilization is performed by first applying radiofrequency energy to the inside of the tubes, and then placing a silicone matrix insert. After the coil or insert is placed, scar tissue develops, causing the tubes to become sealed shut.

10. Tubal Ligation

11. Hysterectomy

12. Involuntary, no informed consent: • Coerced sterilisation: • financial or other incentives, misinformation, intimidation to compel person to undergo the procedure; may be required as condition of health services or employment • Forced sterilisation: • sterilisation without knowledge or not given opportunity to provide consent

13. Forced or coerced sterilisation • Who? Racial and ethnic minorities (i.e. Roma), poor, HIV positive, PWD • When?Often after birth of a child whilst in theatre, especially after caesarean births; when undergoing other medical treatment; or a scheduled procedure in absence of other medical procedures

14. Women & Girls With Disabilities Why do you think women and girls with disabilities are forcibly sterilised, or coerced?

15. ? • Burden? • Incapacity? • Eugenics?

16. PWD cont… Why? • menstrual management and personal care, • pregnancy prevention (including pregnancy that results from sexual abuse) - lack of adequate measures to protect against the sexual abuse and exploitation • myth of HIV prevention through sleeping with a virgin or a person with a disability • avoid inconvenience to caregivers, • lack of adequate and appropriate services to support women with disabilities in their decision to become parents

17. Access to sexual reproductive health care • systematic exclusion from reproductive and sexual health care, • limited voluntary contraceptive choices, • a focus on menstrual suppression, • poorly managed pregnancy and birth, • involuntary abortion, and • the denial of rights to parenting.

18. Factors playing a role in forced sterilisation • social attitudes • difficulty in communication or understanding increases the vulnerability • Substituted decision making / guardianship including consenting to sterilisation on their behalf. • Justification as being in their “best interests”

19. South African Law • The Sterilisation Act 44 of 1998 provides that sterilisation may be performed on a person incapable of consenting or incompetent to do so in 3 circumstances: • On the request of a person in charge of a hospital with the consent of her parent, spouse, guardian, curator; • Where a panel concurs that it be performed, or • If the person is mentally disabled to such an extent that such a person is incapable of: • making his or her own decision about contraception or sterilisation; • developing mentally to a sufficient degree to make an informed judgement about contraception or sterilisation; and • fulfilling the parental responsibility associated with giving birth.

20. 8 Factors… • If a panel concurs, they must have considered all relevant information, including- • the person's age; • whether there are other safe and effective alternatives to sterilisation; • the person's mental and physical health and wellbeing; • the potential effect of sterilisation on the person's mental and physical health and wellbeing;

21. Factors… • the nature of the sterilisation procedure to be performed; • the likelihood that the person will become capable of consenting to sterilisation; • whether the sterilisation is in the best interests of the person to be sterilised; and • the benefit which the person may derive from sterilisation.

22. BUT… • Sterilisation may not be performed on a person under 18 (a child) UNLESS the physical health of the person is threatened AND only when there is NO other safe and effective method of contraception except sterilisation. Yet CRPD art 23 (c). • The Regulations to the Act also provides that a person suffering from chronic or acute mental illness shall not be considered for sterilisation while he or she is unable to consent owing to such mental illness.

23. Consent i.t.o. the Sterilisation Act: • “consent” means consent given freely and voluntarily without any inducement and may only be given if the person giving it has: • been given a clear explanation and adequate description of the proposed plan of the procedure; and consequences, risks and the reversible or irreversible nature of the sterilisation procedure; • been given advice that the consent may be withdrawn any time before the treatment; and • signed the prescribed consent form.

24. Sterilisation Act… • “mental disability” means a range of functioning extending from • partial self-maintenance under close supervision, • limited self-protection skills in a controlled environment through limited self care and requiring constant aid and supervision, to • Restrained sensory and motor functioning and requiring nursing care.

25. Informed Consent (internationally) • FIGO (International Federation of Gynaecology and Obstetrics) Guidelines recommendations: • free and informed consent of the woman herself is a requirement for sterilisation. • Only women with disabilities themselves can give legally and ethically valid consent to their own sterilisation. • Family members (including spouses and parents), guardians, carers, medical practitioners, and/or government or other public officers, cannot consent to sterilisation on behalf of her.

26. Informed consent… • Perceived mental incapacity, including medically or court determined mental incapacity, does not invalidate the requirement of free and informed consent of the woman. • To obtain informed consent, women with disabilities must be provided with information that sterilisation is a permanent procedure and that alternatives to sterilisation exist, such as reversible forms of family planning.

27. Informed consent… • All information must be provided in language appropriate to the individual woman’s needs, including spoken, written, and sign, that a woman understands, and in an accessible format such as Braille and plain, non-technical language. • The doctor is responsible for ensuring the patient is counselled on the risks and benefits, side effects of the procedure and its alternatives.

28. Informed consent… • Sterilisation for prevention of future pregnancy does not constitute a medical emergency. • Sterilisation should not be performed on a child. • PWD, including through their representative organizations and networks, must be included in the evaluation and development of legislation and other measures designed to ensure the enjoyment of all their rights, including sexual and reproductive rights and the right to found a family, on an equal basis with other women and girls.

29. Informed consent is… not a signature but a process of interaction and communication!

30. Is the Sterilisation Act compliant with the CPD? Discussion • found a family? • No • decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education are recognised, and the means necessary to enable them to exercise these rights are provided? • No mention of age- or disability- appropriate information • No mention of language or assistive communication • No indication of consultation / preference / will of PWD obtained, except for safeguards in factors the panel must consider • No mention of agency • Emphasis on legal capacity (i.e. reference to ‘incapable’) in Act • retain fertility on an equal basis with others? • No – legal capacity does not comply with art 12 of CRPD therefore no equality

31. Annexure A and B to Regulations of Sterilisation Act (forms to be completed) • A: REQUEST FOR STERILISATION (form 1) • Persons capable of consenting complete Part A and Part B of Form 1 and submit such form to the head of the health facility, together with a completed standard consent form / or in terms of section 2 (3) (a) of the Act, Part A and Part C of form 1 shall be completed. • Persons incompetent to consent or incapable of consenting owing to severe mental disability - the parent, spouse, guardian or curator who requests the sterilisation of a person who is incapable of consenting or incompetent to consent owing to severe mental disability shall complete Part A and Part C of Form 1. • Consent.—A standard consent form for surgical procedures used by the health facility or hospital concerned shall be completed in any request for sterilisation. • B: NOTIFICATION OF STERILISATION (RECORD KEEPING) (form 2) • the person performing a sterilisation shall complete Form 2 and submit to the head of the health facility at which the sterilisation was performed

32. Rights violations • right to experience sexuality, to have sexual relationships, and to found and maintain families. • right to bodily integrity • right of a woman to make her own reproductive choices • right to dignity • right to equality on equal basis with others. • right of access to health care • Forced sterilisation amounts to…

33. Special Rapporteur on Violence against Women: • “Forced sterilisation is a method of medical control of a woman’s fertility without the consent of a women. Essentially involving the battery of a woman – violating her physical integrity and security – forced sterilisation constitutes violence against women” • Also if a government has “failed to take steps to prevent acts that put women’s physical and mental health at grave risk that constitutes cruel and inhuman treatment.” • Also “… may amount to torture” when conducted with the legal consent of the person’s guardian but against the disabled woman’s will or carried out by State officials in accordance with coercive family planning laws or policies.

34. Your responsibilities: • Advocatefor free and informed consent of all persons, including persons with disabilities in all sterilisation procedures at clinics and hospitals. • Educate our communities, particularly carers, parents, clinic nurses, doctors and girls and women with disabilities about the requirements of free and informed consent. • Protectgirls and women with disabilities from forced sterilisations by reporting forced sterilisations and taking proactive steps against this practice. • Get involved in policies and laws about sterilisation to promote the sexual reproductive rights of women and girls with disabilities.

35. Thank you for your time and commitment!