Parental choice on normalising cosmetic genital surgery

A wonderful  response to the BMJ article, thank you Arlene. It would be my dream that all parents get to read this before they start making decisions on behalf of their intersex child. -Mani.

In response to:

The editorial by Liao et al and subsequent responses highlight the ongoing clashes of opinion among various clinician specialists and people who live with diverse genitalia. Although the process of gender assignment is based today on more than genital appearance, it risks underestimating the uncertainties of each child’s future gender identity. Recent scholarship using mixed methodologies demonstrates that 25% of adults with diverse sex development identify and live in ways that defy simple “male vs. female” categorization(1). Even in the hands of the most dedicated clinicians, research and care that aims to emphasize functional and psychosocial outcomes does not always incorporate this reality. A non-medicalized (2) approach to education that promotes parents’ acceptance of natural variation is sorely needed to change families’ understanding of their options as either doing surgery or “doing nothing.”

Clinician and family perceptions of the availability and adequacy of psychosocial support remain at odds. Although psychological support was offered to all new patients in every clinic in one European study (3), another study found that while many parents felt a strong need for psychological support, half felt the support they received was inadequate. (4) This does not imply that offering clinical psychological support is a token gesture. It does indicate a need to shift the energy of researchers toward development of meaningful, nonsurgical interventions.

In addition to such simple measures as having a team member reach out to families periodically, peer support is an inexpensive means to promote acceptance and integration of DSD into family life. Peer support groups view their role as complementary to clinical services and are eager to create partnerships with clinicians. (5) Support coming from those who have “walked the walk” is highly valued by families who often feel isolated. Seasoned parents with well-developed coping skills can help families develop confidence and cultivate parenting strategies that support recognition of children’s autonomy and right to make their own choices.

Educating parents with standardized information is ideally part of routine care from the time of diagnosis. Assimilation of complicated information takes time and repetition. Objective assessment of parents’ comprehension is vital given the recent alarming finding that 40% of parents reported they did not completely understand their child’s diagnosis.(4) Balanced education includes disclosure of relevant medical and social controversies. Families should be made aware of legislative changes and human rights statements to avoid catastrophic scenarios in which older children accuse parents who made irreversible treatment decisions of ignoring information that was widely available at the time.

As a physician who is also a parent of adults with reproductive difference, I know that clinicians, advocates, families and patients of all ages share a goal of promoting the health, happiness, and resiliency of people born with unexpected sex characteristics. If there is a secret to raising healthy children, it is to accept and focus on what they are, instead of what they’re not. Changes happening everywhere challenge us reimagine intersex, not as disease, but as a way of living in the world. It is time for clinicians and families to develop a mutual understanding that “our diversity – the differences between our experiences and perspectives, as well as the shapes of our bodies – is something that we should celebrate and protect, in all its forms.”(6)

Arlene Baratz MD
Arlene.baratz@aisdsd.org
Board of directors, family and medical adviser
Androgen Insensitivity Syndrome- Differences of Sex Development Support Group
http://www.aisdsd.org
Advocates for Informed Choice
http://www.aiclegal.org
Breast radiologist
Temple University School of Medicine
Allegheny Health Network
Department of radiology
312 East North Avenue
Pittsburgh PA 15241 USA

 

References
  1. Schweizer K, Brunner F, Handford C, Richter-Appelt H. Gender experience and satisfaction with gender allocation in adults with diverse intersex conditions (divergences of sex development, DSD). Psychology & Sexuality. 2013;5(1):56-82. doi: 10.1080/19419899.2013.831216.
  2. Streuli JC, Vayena E, Cavicchia-Balmer Y, Huber J. Shaping parents: impact of contrasting professional counseling on parents' decision making for children with disorders of sex development. The journal of sexual medicine. 2013;10(8):1953-60. doi: 10.1111/jsm.12214. PubMed PMID: 23742202.
  3. Pasterski V, Prentice P, Hughes IA. Consequences of the Chicago consensus on disorders of sex development (DSD): current practices in Europe. Archives of disease in childhood. 2010;95(8):618-23. doi: 10.1136/adc.2009.163840. PubMed PMID: 19773218.
  4. Bennecke E, Werner-Rosen K, Thyen U, Kleinemeier E, Lux A, Jürgensen M, et al. Subjective need for psychological support (PsySupp) in parents of children and adolescents with disorders of sex development (dsd). European Journal of Pediatrics. 2015. doi: 10.1007/s00431-015-2530-8.
  5. Baratz AB, Sharp MK, Sandberg DE. Disorders of sex development peer support. Endocrine development. 2014;27 (Hiort O, Ahmed SF (eds): Understanding Differences and Disorders of Sex Development (DSD). ):99-112. Epub 2014/09/24. doi: 10.1159/000363634. PubMed PMID: 25247648.
  6. United Nations Office of the High Commissioner for Human Rights. Opening remarks by Zeid Ra'ad Al Hussein, United Nations High Commissioner for Human Rights at the Expert meeting on ending human rights violations against intersex persons

 

The Free & Equal Global Film Series is a collection of documentaries and narrative films that explore the lives of lesbian, gay, bisexual, transgender and intersex people in different parts of the world. Films included in the series are available to UN offices for non-commercial screenings and educational purposes.

The Global Film Series is part of the United Nations’ global Free & Equal campaign, dedicated to raising awareness of homophobic and transphobic discrimination and violence. It is an initiative of the Office of the United Nations High Commissioner for Human Rights and the United Nations Creative Community Outreach Initiative.

NZ's own documentary film 'intersexion' is part of the resource kit

intersexion

intersexionWhen a baby is born, the first question we ask: Is it a boy or a girl? What if it's neither? Being intersex may be as common as having red hair, but taboo and stigma keep many intersex people in the closet. Invasive “normalizing” surgeries are performed on intersex children across the world to make their genitals fit the male/female norm.
“Intersexion” sets out to de-mystify intersex, looking beyond the shame and secrecy that defines many intersex births. Interviewing intersex people in America, Ireland, Germany, South Africa and Australia, the film explores how they navigate their way through childhood, adolescence, relationships and adulthood, when they don’t fit the b

Others are:

Call Me Kuchu - Trailer

“Call Me Kuchu” explores the struggles of the lesbian, gay, bisexual and transgender (LGBT) community in Uganda during a time of increasing homophobia and as a new bill threatens to make homosexuality punishable by death. David Kato – Uganda’s first openly gay man – and his fellow activists work against the clock to defeat the legislation while combating vicious persecution in their daily lives. But no one, not even the filmmakers, is prepared for the brutal murder that shakes the movement to its core and sends shock waves around the world.

Out in the Night

In New York City's West Village in 2006, four young lesbian and gender non-conforming African-American women were brutally assaulted by a stranger whose unwanted sexual advances they had just spurned. In defending themselves, they also unwittingly left themselves vulnerable to draconian prison sentenccallmekuchues that wrested them from their supportive New Jersey families. Film maker dorosh-walther returns to the scene of their alleged crime, using security footage to condemn the deplorable conduct of reporters and police officers. With a deep compassion for its subjects tempering its outrage over the indignities they've suffered, the film poses a troubling question: How would have this have unfolded had it been four straight white women instead.

How to organize a screening

Any UN office can hold up to two screenings per country. The film makers of films included in the series have agreed to waive any booking fees and other charges that might normally apply. Screenings may be either open to the public or to an invited audience, and admission must be free of charge.

UN offices are encouraged to consider organizing panel discussions or other events linked to screenings as a way to engage local communities in discussion of the themes highlighted on screen. Collaboration with civil society organization, local government and other stakeholders is also encouraged. Activists may approach a local UN office if they are interested in co-organizing an event and screening.

A Free & Equal Global Film Series poster can be downloaded here in order to publicize screenings (space is provided for adding the film title(s) date(s), venue and other relevant details).

UN offices that are interested in screening any of the films are invited to send a request with “Request to Free & Equal Global Film Series” as email subject to limad@un.org, specifying the film title, purpose, possible partners and planned date of the screening.

The UN Office of the Human Rights Commissioner has released an intersex fact sheet as part of its Free&Equal campaign, and as part of the worldwide movement to recognise the human rights of people with intersex variations.

datauri-file(14)The first of its kind by the UN, the fact sheet explains what ‘intersex’ means, noting its distinction from sexual orientation and gender identity. It highlights the stigma and human rights violations that are often faced by people with intersex variations. It also includes a number of action points for member states, the media and institutions.

The intersex fact sheet encourages everyone to make a difference:

  • Speak out when you see any form of discrimination or violence against intersex people.
  • Ensure that educators are trained to respect and provide equal treatment to intersex people.
  • Remember that intersex people may have any sexual orientation and gender identity.

Organisation Intersex International (Oii) Australia President, Morgan Carpenter, describes it as

a short, well-balanced and informative document that details the human rights violations faced by intersex people... The action points provide a very useful benchmark for work on intersex human rights and health issues.”

If you are looking for ways to be more supportive of all LGBTI people, and or more information about intersex rights and the responsibilities of government… check out the Free&Equal campaign.

If you’re looking for some more resources about what creating inclusive school environments, check out the resources page of the Australian Safe Schools Coalition.

New Zealand's own documentary intersexion is part of the resource kit and we will be highlighting it and explaining how to film viewings in the next post.

Groundbreaking research

Mani and Dame Margaret Sparrow were guests at a very special presentation by 4th year medical students at Otago University.

otagomedical

They presented a groundbreaking piece of research looking at the experience of takatapui in the health care system.

Ti Whanawhana collaborated with the students in this piece of research.

 

otagowhanawhana

This work  gives me great heart that attitudes are being challenged and changed on our health care system - Mani

Persecution of civil society, migration crisis top concerns of UN human rights chief

UN High Commissioner for Human Rights Zeid Ra’ad Al Hussein
UN High Commissioner for Human Rights Zeid Ra’ad Al Hussein. UN Photo/Jean-Marc Ferré

14 September 2015 – An “exhausted and angry” High Commissioner for Human Rights today opened the 30th session of the United Nations Human Rights Council with a wide-ranging address in which he singled out countries by name for their role in accelerating human misery and implored decision-makers worldwide to swiftly establish an effective and principled policy to deal with the global migration crisis.

"Unless we change dramatically in how we think and behave as international actors – Member States, inter-governmental organizations and non-governmental organizations alike – all of us in the human rights community will be inconsequential in the face of such mounting violations", said Zeid Ra’ad Al Hussein.

The human rights chief also drew attention to the “the specific human rights violations faced by millions of intersex people.”

"Because their bodies don’t comply with typical definitions of male or female, intersex children and adults are frequently subjected to forced sterilization and other unnecessary and irreversible surgery, and suffer discrimination in schools, workplaces and other settings,” he said, adding that his office plans to have an expert meeting to identify steps that States and others can take to end these abuses."

Opening remarks by Zeid Ra'ad Al Hussein, United Nations High Commissioner for Human Rights at the Expert meeting on ending human rights violations against intersex persons Geneva, 16 September 2015 Room 15, Centre International de Conférences Genève Colleagues and Friends:

"This is a historic meeting: the first time that the United Nations has convened a discussion specifically to address the human rights situation of intersex persons...read more

ITANZ at the inaugural ‘Show and Tell’ event.

Held at the National Library, over 30 groups were represented.

Board member Jeanie Douche and ITANZ archivist Graham Brandreth-Wills
Board member Jeanie Douche and ITANZ archivist Graham Brandreth-Wills

The theme of the event was 'Queer History in the Making'. Celebrating queer history, the diversity of our communities, and our contribution to New Zealand.

A unique event for Wellington's queer, LGBTIFFTQ and rainbow community organisations, sharing information with the wider community and public.

The Show and Tell included:
-  a panel discussion on queer history
- open mic for community groups
- community group displays
- presentations from the LAGANZ
- performances

Local Ti Whanawhana group
Local Ti Whanawhana group

For ITANZ it also has become our lead in launch event to next year’s celebration of our 20 year Anniversary.

 

 

ITANZ has recently been in Australia to attend the LGBTI Health Alliance conferenceConference. Held from Thursday 13 to Saturday 15 August 2015, the conference brought together community members, community organisations large and small, health practitioners, researchers, academics, policy makers, advocates, and others who are interested in improving the mental, physical and emotional wellbeing of LGBTI people.

Mani With  Aych Mc Ardle Rainbow Youth
Mani With Aych Mc Ardle Rainbow Youth

A powerful and significant gathering of people across Australasia.  The presence and recognition of intersex issues being part of the broader Rainbow community is very high in Australia. In part it’s the reality of having a LGBTI peak body, it is also the amazing work that has been done in Australia by the intersex Community there.

Mani withRodney Croome and Sharon Jones, Tasmania
Mani withRodney Croome and Sharon Jones, Tasmania.

We (ITANZ) ran a workshop, called thriving in the margins. A workshop that was not presumptive, but rather an exploring of how we do that, despite all the many obstacles to making this a ‘hard thing to do’. We thank Gina Wilson for her chairing the workshop and say thank you to all the people who attended. We look forward to running that workshop here in New Zealand.

Mani with Sally Morris (Perth) and ITANZ colleague Tommy Hamilton
Mani with Sally Morris (Perth) and ITANZ colleague Tommy Hamilton

 

The conference was also a great opportunity to catch up with ITANZ friends and colleagues, both from Australia as well as NZ!

 

 

 

We extend warm thanks to all the people who were involved in planning and running this important conference.

We are honoured to have Rosslyn Noonan support the work we do at ITANZ.

If you would be interested in finding out more about what ITANZ does and how you can contribute then email us at intersexyouthaotearoa@gmail.com.

In this video Rosslyn shares with us how she became aware of Intersex/DSD peoples experiences and some strategies to increase Intersex/DSD peoples visibility and herefore improve institutions engagement with the stories from the Intersex/DSD community to inform good practice.

Feel welcome to share this message, or comment.  Please let us know what you feel are the key issues for Intersex/DSD people in Aotearoa today.

Hi folks

So much has been going on this year in the world of intersex awareness and change.

Last month I was in Geneva for an international meeting on funding intersex activism. It is an incredible milestone to reach. For most of the last 20 years the majority of groups, work has been self-funded by passionate individuals who wanted change. I want to thank the Astraea Foundation for their initiative and willingness to take on this task.

While in Geneva I was also able to catch up friends and colleagues in ilga.

Ilga was the first organisation in the world to recognise intersex issues and to source funding so that intersex activists from around the world could meet. Ilga is an amazing organisation and I am proud to be part of it.

Next year ilga oceania conference will be in Auckland New Zealand and run alongside the GLISA Outgames and Human Rights Conference. If you don’t have this event in your calendar please consider doing so.

We would love to see you in NZ 13-14th Feb 2016 and part of what will I am sure be a stunning event.

Mani

University of Otago, Wellington

Understanding *diverse sex development/intersexuality in NZotago078176

This study focuses on how decisions are made for the health care needs of children whose sex development has been different from others.

See the outline and contact details on the website.

*DSD is an umbrella term for specific condition’s such as congenital adrenal hyperplasia (CAH), Androgen insensitivity syndrome(AIS)-can be partial (PAIS) or complete (CAIS),severe hypospadias, Klinefelter syndrome,5-alpha reductase deficiency ,gonadal dysgenesis ,46 ,XX/46,XY, Cloacal anomaly etc.