interACT FAQ

AMY-What-does-I-MeanAn estimated one in 2,000 babies is born with reproductive or sexual anatomy and/or a chromosome pattern that doesn’t seem to fit typical binary definitions of male or female. These traits are sometimes grouped under the terms “intersex”, and include androgen insensitivity syndrome, some forms of congenital adrenal hyperplasia, Klinefelter’s syndrome, Turner’s syndrome, hypospadias, Swyers’ syndrome, and many others. For more information about specific traits, see intersex-definitions.

Intersex people have lived in all cultures throughout history. Individuals and societies have developed different ways of responding to this reality.

One reason many people haven’t heard of intersex traits is that they are not widely discussed. In America since the 1950’s, young people with intersex traits have been routinely subjected to multiple harmful and unnecessary surgeries and other medical interventions in an attempt to make their bodies conform to typical binary notions of male and female. These surgeries have resulted in loss of sexual function, scarring, incontinence, loss of reproductive capacity, and PTSD, among others.

The families of these young people were told to keep these experiences a secret, sometimes even from the children. Sometimes doctors didn’t tell the parents or the children the full truth concerning the procedures they performed. Until recently, doctors believed that early surgical intervention and secrecy would help the child develop “normally.” Most young people born with intersex traits did not receive long term follow-up after surgery and no significant studies were done to evaluate this treatment

In the 1990’s, intersex adults began stepping forward to say that the medical treatment they received in childhood was harmful, leading to sterility, ongoing pain, scarring, incontinence, loss of genital sensation and sexual function, and depression. Many also pointed out that the secrecy surrounding their experiences led to extremely damaging feelings of shame and stigma and had a profound negative impact on their lives.

Leaders of the adult intersex community started calling for an end to unnecessary surgeries, and for children with intersex traits to have a voice in their own treatment. At first, their input had little effect on the medical community’s treatment of children.

In the late 90’s, however, the single case study that provided the basis for the surgery/secrecy model was discredited. Slowly, the insights of intersex adults began to have some impact on the medical treatment of children born with intersex traits.

AIS-DSD 2015 Conference

AIS-DSD 2015 Conference

Around the same time, parents of children born with intersex traits started finding each other and form supportive communities. They realized that they too were not alone. They began advocating for models of care that took the experiences and wisdom of children and their families into account.

Thus far, some parents’ groups have organized around specific intersex traits, and today the AIS-DSD Support Group, the largest intersex support group for adults, families and youth, advocates for complete disclosure of medical information to parents, more research, more sensitive care of families (especially at the time of diagnosis), and more psychological and peer support for parents and affected children. These combined efforts have also started to impact standards of care and support for research.

The past ten years have been a period of significant change. In response to the urging of some parents, affected adults, and clinicians, new standards of care were released in 2006 by the Consortium on Disorders of Sex Development and the International Consensus Conference on Intersex. But these standards were not binding, and no data has yet been gathered to show whether they are being widely used. However, they signaled progress. Perhaps most significantly, the standards encourage doctors to give parents complete information about their child. Generally, parents are also no longer told to keep their child’s intersex trait a secret. Many doctors now recommend psychological support for families and children rather than secrecy and avoidance. However, many families still lack access to these support services.

Despite wide condemnation from the international community, irreversible surgical treatment of intersex children remains a very controversial topic among specialists in the United States. Some doctors are suggesting a more restrained approach to surgery, and some contend that new surgical techniques may have better outcomes than older ones. Other doctors recommend postponing surgery until the child is old enough to participate in the decision, pointing to the lack of data showing that surgery benefits the child. In spite of what the National institutes of Health (NIH) has termed “a crisis of clinical management,” medically unnecessary genital surgery on infants with intersex traits remains a practice in the U.S.

Various human rights bodies have recognized that the unnecessary medical treatment of people with intersex conditions rises to the level of human rights violations. The World Health Organization (WHO) explains that “[i]ntersex persons, UN-Commissioner-Kimberly-Zieselman-Intersex-Activists-800x630in particular, have been subjected to cosmetic and other non-medically necessary surgery in infancy, leading to sterility, without informed consent of either the person in question or their parents or guardians.” The United Nations Special Rapporteur on Torture (SRT) has also called for an end to the abuses against intersex people: “Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, ‘in an attempt to fix their sex’, leaving them with permanent, irreversible infertility and causing severe mental suffering. . . 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.” (SRT 2013) As explained by the UN Committee on the Rights of the Child in February 2015, “[t]he committee is deeply concerned about…cases of medically unnecessary surgical and other procedures on intersex children, without their informed consent, which often entail irreversible consequences and can cause severe physical and psychological suffering, and the lack of redress and compensation in such cases.”

Parents of children with intersex traits find themselves pressured by medical personal to make a crucially important decision for their child when the child is unable to participate in the decision making process. As opposed to providing families with adequate mental health care to process the situation, children with intersex traits are pathologized by the medical community and the decision to perform early and irreversible genital surgery is presented as a medical need due to generalized discomfort around the diverse array of natural human bodies. Often the parents are presented with the option to operate when the child is very young and has no medical need for surgery, when cosmetic surgeries could just as easily be performed later when the child is able to participate in the decision. Parents are put in the difficult position of making medical decisions they never anticipated, in an area where the United States lags behind international human rights law, and with little evidence to guide them. While some parents are comfortable with the information given to them by their children’s doctors, most report feeling pressured to make quick decisions without adequate information or support.

justice4MC_interACT-intersex-law-policyThe medical treatment of children born with intersex traits raises significant legal and ethical issues. There are important considerations in order for doctors to meet the legal standards for informed consent. Some parents of children born with intersex traits have reported feeling pressured to make quick decisions, often without complete information about the risks of surgery and the uncertainty of outcomes.

Many parents feel that their child’s emotional health is a major factor in their decisions, yet are not given access to specialists in children’s mental health and development. Well-intentioned physicians may try to ease parents’ fears by downplaying the risks, but parents who learn after the fact about the doubts surrounding elective genital surgery may be deeply harmed by this practice.

Legal scholars and ethicists have also questioned the process for making surgical decisions on behalf of children with intersex traits, particularly when these surgeries result in sterilization. Other legal issues that may arise for children with intersex traits include medical privacy rights, access to medical records, and school accommodation. Children with intersex traits who are in state custody, such as foster children, may have special legal needs.

When interACT (formerly known as AIC) was founded, awareness of the legal questions surrounding the treatment of children with intersex traits was beginning to grow, but no organization had undertaken legal advocacy on behalf of these young people. With so much at stake for the individuals and families involved, interACT considers not only medical outcomes, but also the civil and human rights of young people born with intersex traits. To this end, interACT is committed to advancing this discussion with a sense of respect and compassion for the children, parents, doctors and intersex adults involved.

home-youth-prideYoung people with intersex traits have unique needs and their voices need to be heard. Their circumstances may present questions about informed consent for treatment, minors’ participation in medical decision-making, reproductive rights, medical malpractice, and harassment and accommodation in institutional settings. Several legal organizations provide services aimed at the legal issues of intersex adults, but before interACT none had developed the capacity to specifically address the issues of youth with intersex traits. For this reason, interACT (formerly known as AIC) was founded to focus on legal and human rights issues impacting these young people.

As interACT grew, staff members worked to empower the young members of the intersex community, starting the first ever intersex youth program which offered space to encourage the growth of young intersex advocates. Today, intersex youth voices are an integral part of our organization. After all, intersex youth are at the core of our mission.

interACT-BuzzFeed-Video-United-Nations-2Today, most people still don’t know about intersex. Until recently, intersex people have been largely invisible. Increasing visibility and understanding about issues facing the intersex community, particularly the experience of intersex youth, is essential to support intersex advocacy and bring about desired change.

Through the development and growth of our youth program, interACT has realized the valuable impact of young intersex voices in effectively raising visibility in the media. Whether educating Fox News anchors, consulting on groundbreaking book and Television projects, or appearing in popular Buzzfeed videos, interACT is using different media effectively to bring intersex issues to light.

The final sentence of interACT’s mission statement explains that interACT’s “activities are grounded in a sense of respect and compassion for the children, affected adults, parents, and doctors involved.” It’s unusual for a legal advocacy organization to have the term “compassion” in its mission statement. But interACT believes that the law, properly used, is a tool for achieving justice; and that justice, properly understood, has compassion at its heart.

Legal advocates have always had an important role to play in protecting the most vulnerable members of society. Parents, doctors, mental health professionals, affected adults and family members all care deeply about protecting children. However, the historical treatment of children with intersex traits and the reality of society’s intolerance of difference has created so much pain and anger that these different stakeholders have had a great deal of difficulty in communicating effectively. While interACT’s constituents are youth, we strive for respectful compassion for all and our mission reflects this goal

interACT prefers use of the term intersex over hermaphrodite or disorder of sex development or even difference of sex development or DSD. The background of interACT’s position on the language used to describe intersex persons and their traits can be found in interACT’s Statement on Intersex Terminology.