Example 5: Legal advocacy for children with differences of sex development (DSD) or intersex conditions
Project Type: Advocacy
Advocates for Informed Choice (AIC) is the only organization in the US to undertake a coordinated strategy of legal advocacy for the rights of children with differences of sex development (DSD) or intersex conditions. DSD or intersex conditions are congenital variations of chromosomal, gonadal, and/or anatomical sex.
People worldwide born with DSD or intersex conditions face a wide range of violations to their sexual and reproductive rights, as well as the rights to bodily integrity and individual autonomy. Infants and children with DSD or intersex conditions are often subject to irreversible sex assignment and involuntary cosmetic genital-normalizing surgery in an attempt to make their bodies more typical. Intersex individuals suffer life-long physical and emotional injuries as a result of such treatment, including sterility, pain, loss of genital sensation and function, and depression. Many children with DSD or intersex conditions continue to undergo involuntary genital surgery.
- AIC used conferences and academic lectures to raise awareness and advocate on behalf of the rights of intersex children.
- In April 2012, Anne Tamar-Mattis, Executive Director of AIC, published an article in the California Law Review Journal on “Sterilization and Minors with Intersex Conditions in California Law.” The article calls on California to adapt its procedural framework for protecting the reproductive rights and the best interests of incompetent patients to fit the situation of children with intersex conditions. (www.californialawreview.org/articles/sterilization-and-minors-with-intersex-conditions-in-california-law)
- In October 2012, AIC was invited to present at the World Health Organization (WHO) on forced sterilization of intersex children, in preparation for its upcoming report on Involuntary Sterilization.
- In December 2012, AIC submitted a report the UN Special Rapporteur on Torture on “Medical Treatment of People with Intersex Conditions as Torture and Cruel, Inhuman, or Degrading Treatment or Punishment.” The report described violations experienced by people with intersex conditions in healthcare settings, including cosmetic genital-normalizing surgery, involuntary sterilization, excessive genital exams and medical display, human experimentation and denial of needed medical care.
- In 2008-2010, AIC worked with an intersex woman who underwent genital surgery as a child to receive an official apology for the woman from two leading hospitals and the physician who had overseen her care. This is the first apology of its kind. (www.opensocietyfoundations.org/voices/why-are-doctors-still-performing-genital-surgery-on-infants)
Results and Lessons Learned
- In its 2012 report, “Born Equal and Free: Sexual Orientation and Gender Identity in International Human Rights Law,” the UN recognized human rights violations against children with intersex/DSD: “In addition, intersex children, who are born with atypical sex characteristics, are often subjected to discrimination and medically unnecessary surgery, performed without their informed consent, or that of their parents, in an attempt to fix their sex.” (www.ohchr.org/Documents/Publications/BornFreeAndEqualLowRes.pdf)
- In 2013, the UN Special Rapporteur on Torture, Juan Mendez, released a powerful statement calling for an end to forced genital-normalizing surgery and medical display: “The Special Rapporteur calls upon all States to repeal any law allowing intrusive and irreversible treatments, including forced genital-normalizing surgery, involuntary sterilization, unethical experimentation, [or] medical display … when enforced or administered without the free and informed consent of the person concerned. He also calls upon them to outlaw forced or coerced sterilization in all circumstances and provide special protection to individuals belonging to marginalized groups.”
- In 2013, AIC was invited to testify in front of the Inter-American Commission on Human Rights on issues of involuntary genital surgery. The Inter-American Commission on Human Rights created a unit on the Rights of Lesbian, Gay, Bisexual, Trans and Intersex Persons in 2011.
- A human rights approach to legal advocacy allows for a wider scope of influence, especially when traditional legal mechanisms are ineffective.