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ITANZ submission to the Committee on the Rights of the Child

Posted in: Our Communities
By - 24th September 2016

Submission from the Intersex Trust of Aotearoa New Zealand (ITANZ) to the Committee on the Rights of the Child.

73rd session for the Convention on the Rights of the Child September 2016

 
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Dear Committee Members,

ITANZ is a New Zealand registered charitable trust that provides information, education and training for organisations and professionals who provide services to intersex people and their families. We submit the following information in preparation for the review of New Zealand’s obligations to the Convention on the Rights of the Child. We also submit as an appendix to this document the personal story Mani Mitchell, our executive director and an intersex person who has grown up in Aotearoa, New Zealand.

This submission has been prepared on behalf of ITANZ by our human rights and research intern, Aych McArdle. Alongside ITANZ, three other NGOs from Aotearoa New Zealand also support this submission: RainbowYOUTH, OUTLine and Women’s Health Action. The submission has 14 individual signatories, with the credentials of signatories listed on page five.

List of questions and recommended actions

ITANZ has been involved in the consultation and development of the New Zealand Human Rights Commission (NZHRC) submission to this committee and we support their list of recommendations to the state to:

(a) Develop and enact legislation and practice guidelines that ensure that no one is subjected to medical or surgical treatment during infancy or childhood without informed and supported decision-making that guarantees bodily integrity, autonomy and self- determination to children concerned, and provides families of intersex children with adequate counseling and support;

(b) For this purpose, direct the Ministry of Health to support the establishment and functions of a National Multi-Sectoral Expert Advisory Group, to advise it on:

(i) Legislative and procedural safeguards for intersex children, an ethical framework, funding and research requirements;
(ii) Specific support services for intersex children and adults and their families, including 2 consideration of a single, family-centred national service that ensures whole of lifelong multidisciplinary care and support care; and
(iii) Development of agreed definitions of intersex and DSD conditions to enable enhanced data collection, and consideration of the establishment of a national register.

Additionally, we ask the committee to:

1. Seek assurance from the state that they end the practice of genital normalizing surgery on intersex children through legislative protections and the implementation of a set of professional standards for the medical profession that affirm the genital autonomy of intersex children.

2. Question the state on what financial commitments it will make to ensure that appropriate advocacy and social support services are made available to intersex children for the whole of their lives and their families.

The landscape in Aotearoa, New Zealand

As explained in the NZHRC submission to this committee under this review: “infants born in New Zealand with an intersex (condition) or Disorder of Sex Development (DSD) may undergo surgery and other medical interventions intended to make their genitalia appear more typically “male” or ‘female”. As such interventions take place when the child is still an infant, consent is procured from the parents or legal guardian of the child”. We note the Special Rapporteur on Torture’s comments on the non consensual medical interventions on intersex children which were described as resulting in “permanent, irreversible infertility and causing severe mental suffering.”

Issues

1. The preservation of life and right to genital autonomy The intersex community has no problem with the idea of life saving surgery. Of concern for our community are genital surgeries that are undertaken for reasons other than the preservation of life and which consequently undermine a child’s right to genital autonomy. We affirm the Helsinki Declaration of 20122 which defines the right to genital autonomy to be: a) personal control of their own genital and reproductive organs; and b) protection from medically unnecessary genital modification and other irreversible reproductive interventions. We affirm the work of Dr Milton Diamond3 who explains that surgeons should not remove any tissue that a person may want later on in life. We know that many in the medical institution in Aotearoa, New Zealand claim that the surgeries they are performing are medically necessary. However we counterclaim that more often surgeries are performed in the interests of aesthetics, heteronormative bias and binary constructions of gender and on this basis undermine the child’s right to genital autonomy

2. Bodily integrity

 We affirm the Child Rights International Network description of bodily integrity as being “the right of each human being, including children, to autonomy and self-determination over their own body” and we endorse their position that “unconsented physical intrusion as a human rights violation” . Surgeries that are performed on us without our consent and/or a full understanding of the impact of these decisions, compromises our bodily integrity. We call on the state to implement effective legislative and professional standards for the medical profession to protect intersex children from surgical decisions that compromise our bodily integrity.

3. Informed consent and the role of the parents

As discussed in the NZHRC submission to this committee, in Aotearoa New Zealand consent is procured from parents or guardians of intersex infants on behalf of the child for surgical interventions on our bodies. We support the Helsinki Declaration’s position that “the only people who may consent to medically unnecessary genital modification and other irreversible reproductive interventions is:

● in the case of a person who is competent to give free and informed consent, being fully informed about the nature, the risks and benefits of the intervention – the person undergoing the intervention; and
● in the case of an incompetent person including a young child – only a properly constituted public authority or tribunal appointed to balance the human rights and the best interests of the person after considering the views of family members, professionals and an independent advocate for the person.” We call on the state to establish a public authority or tribunal that can advocate for the best interests of the child.

We call on the state to fund counselling and social support services for the child, parents and family for the whole of life including parent support groups that have access to a wide variety of quality information.

4. Legal protections

In Aotearoa New Zealand there is no legal protective legislation under our Human Rights Act that specifies intersex status, gender identity and gender expression. We call on the state to immediately include intersex status, gender identity and gender expression as grounds of non discrimination in Aotearoa, New Zealand.

5. Education and professional development

ITANZ core services include education and training for professionals and students on the diversity of sex, gender and sexuality. We are currently teaching staff and students at the University of Auckland and the University of Otago Medical School about gender identity, gender formation and the diversity of sexual orientation. Of priority in the education for medical students is to help them understand the components of care that will help a person born with a different body to grow up as a healthy, well informed, self anchored and self-loving person. Although we are contributing to this teaching, it is not mandatory for all medical students in Aotearoa New Zealand.

We call on the state to hold the medical profession to account for ongoing professional development in the areas outlined above. We call on the state to ensure medical training institutions include compulsory learning modules on the health needs of peoples with diverse sex, gender and sexualities.

We call on the state to actively find avenues to fund research on and about the experiences of intersex people living in Aotearoa, New Zealand.

6. Whole of life approach to health care We believe that any intersex adult seeking surgery in relation to their intersex condition should have access to life giving and life affirming surgery. In Aotearoa, New Zealand intersex children up to the age of 16 can access free surgical interventions under our public health system. After this age the waiting list is often longer than our life expectancy.

We call on the state to ensure access to safe and appropriate medical care for intersex peoples for all of their lives.

List of questions and recommended actions

As stated above, ITANZ has been involved in the consultation and development of the NZHRC submission to this committee and we support their list of recommendations.

 Additionally, we ask the committee to:

- Seek assurance from the state that they end the practice of genital normalizing surgery on intersex children through legislative protections and the implementation of a set of professional standards for the medical profession that affirm the genital autonomy of intersex children.

- Question the state on what financial commitments it will make to ensure that appropriate advocacy and social support services are made available to intersex children for the whole of their lives and their families.

Conclusion

 
We conclude with a vision of hope for our country, that it might be a place where intersex children grow up without fear of discrimination and unnecessary medical procedures.

We believe New Zealand has the capacity to make these changes and afford these protections.

We welcome the opportunity to provide you with any further clarification you may require on the needs and experiences of intersex people in Aotearoa, New Zealand.

Ngā mihi nui,

Dr Geraldine Christmas, Board member, ITANZ

Dr Jeanie Douché, Adjunct Research Fellow, Graduate School of Nursing Midwifery & Health,Victoria University / Board member, ITANZ\

Tom Hamilton, Lecturer, Unitec / Counselor, OUTLINE / Treasurer, ITANZ

Mani B. Mitchell, Executive Director, ITANZ

Aych McArdle, Human rights and research intern, ITANZ

Stace Robertson, Intersex Youth Aotearoa (IYA) Project Developer, ITANZ

Dr Katrina Roen, Professor, Department of Psychology, The University of Oslo / Board member, ITANZ

Sue Russ, Board member, ITANZ

Dame Margaret Sparrow, DNZM MBE BSc MBChB DipVen FAChSHM DSc(Hon) Retired senior sexual health clinician / Board member, ITANZ

This submission is also supported by:

Toni Duder, National Manager, RainbowYOUTH
Trevor Easton, Manager, OUTLine
Rosslyn Noonan, Director, New Zealand Centre for Human Rights Law, Policy & Practice Faculty of Law, Auckland University
George Parker, Strategic Advisor, Women's Health Action
Denise Steers, PhD student, Social Psychiatry &Population Mental Health Research Unit, Paediatric Department, Wellington Hospital, University of Otago

- 24th September 2016

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