Advocates for Informed Choice

AIC’s Landmark Lawsuit Makes History!

Mordecai Ettinger — Thu, 16 May 2013 21:40:53 +0000

Since the May 14th, launch of our landmark lawsuit in partnership with M.C. and his family, the Southern Poverty Law Center and Steptoe & Johnson LLP, the case has been covered in nearly 100 news outlets! Most of the coverage has been overwhelming supportive and respective, marking historic strides in public awareness of intersex human and civil rights issues. To stand with M.C. and intersex people of all ages, Sign On To Support M.C.! We’re trying to collect 1,500 signatures and we need your help to make it happen.

If you haven’t read these powerful articles already, check out coverage in the progressive mainstay, The Huffington Post & leading bioethicist Alice Dreger’s superb coverage in The Atlantic.

Above, watch Pam and Mark Crawford, M.C.’s parents, discuss the case in their own words. They also spoke with compassion and commitment for winning justice for M.C. at Tuesday’s press conference along with AIC’s Executive Director Anne Tamar-Mattis and Sean Saifa Wall, Board of Directors Co-President (below).

Anne Tamar Mattis with Mark and Pam Crawford at May 14th Press Conference.

Sean Saifa Wall and the Crawfords at May 14th Press Conference.

Anne Tamar Mattis addresses journalists and the public at May 14th Press Conference.

AIC Launches First-of-Its-Kind Lawsuit, Sues for Irreparable Harm Resulting from Surgery

Mordecai Ettinger — Tue, 14 May 2013 14:55:17 +0000

Sometimes we are obligated to work for change simply because we can. My partner of 18 years is an intersex activist, and I have long been an involved ally. The intersex movement has made impressive gains in recent years, yet unnecessary surgeries on children continue. I have many close friends who are intersex and their anger and sadness at their medical treatment touch me deeply. I share their frustration at the slow pace of change. When I went to law school my intersex friends asked me why these harmful, unnecessary surgeries were legal and what the law could do to stop them. As I studied the problem, I found that there were strong legal arguments available to protect intersex children, and a modest effort at this moment in history could make a profound impact. But no one has even tried; there has been no case in a U.S. court about these surgeries. I realized that with my research, my law degree and my commitment to civil rights, I could make a difference in the lives of intersex children.

AIC launched its operations in 2006, by holding the first national intersex legal strategy roundtable. Representatives of national intersex groups, legal and medical academics who have distinguished themselves as leaders in the field, and attorneys from top civil rights groups gathered to create a plan for advancing the rights of intersex children. This historic meeting resulted in a Blueprint for Action, setting AIC’s advocacy priorities, and established AIC as a consensus-builder in a community that has been marked by internal struggles. Our vision is simple and guided by intersex people and people with DSD of all ages: a world where children are allowed to grow to be themselves and make their own decisions about their bodies.

On May 14^th, 2013, Advocates for Informed Choice, The Southern Poverty Law Center, and pro bono counsel for the private law firms of Janet, Jenner & Suggs and Steptoe & Johnson LLP filed a lawsuit today against South Carolina Department of Social Services (SCDSS), Greenville Hospital System, Medical University of South Carolina and individual employees for performing an irreversible and medically unnecessary surgery on an infant who was in the state’s care at the time of the surgery.

The lawsuit, filed in both state and federal court, charges that it was a violation of the U.S. Constitution when South Carolina doctors working for the state surgically removed the healthy genital tissue of a 16-month-old child, potentially sterilizing him and greatly reducing, if not eliminating, his sexual function.

M.C. was born with an intersex condition – a reproductive or sexual anatomy that does not fit typical definitions of male or female. Doctors referred to M.C. as a “true hermaphrodite.” The child was in the care of the South Carolina Department of Social Services when doctors, in cooperation with social services employees, decided to perform this medically unnecessary surgery. Children with M.C.’s intersex condition have bodies that are not easily labeled as either male or female.

Typically, children with these conditions develop as a boy or girl as they grow. Despite not knowing whether M.C. would grow up to be a man or woman, or whether he would elect to have any surgery at all, the defendants performed sex-assignment surgery on a 16-month-old child, removing his healthy phallus in an attempt to make M.C. a girl. M.C. has shown signs of developing a male gender and now, at age 8, has clearly identified himself as a boy.

The lawsuit is the first of its kind in the United States. Since the 1950s, doctors have performed this type of non-consensual sex assignment surgery on infants with intersex conditions. Hundreds of affected adults have come forward to challenge these procedures as abusive and unnecessary. To them, each surgery represents a future of pain, shame and damaged or lost sexual function. M.C., then but a baby, is now included among them. We hope that with the historic launching of this lawsuit, he will be the last. Read the full press release.

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Continuing checking out our blog for posts from community members reflecting on the case and its significance.

David Reimer, Honor and Remember Him

Mordecai Ettinger — Fri, 03 May 2013 23:21:00 +0000

May 5^th commemorates the tragic death in 2004, of David Reimer. For those familiar with his story, his courage in speaking out in spite of the anguish and abuse he suffered seems an enormous accomplishment. Indeed, his life, though too short, and his work, contributed tremendously to the struggles for the human and civil rights of children and adults with intersex conditions and DSD everywhere.

Born in 1965, in semi-rural Manitoba, Canada, to working class parents who both grew up on farms, David was 8 months old when doctors injured his genitals beyond the possibility of repair during a routine circumcision gone terribly wrong. As a consequence, David’s parents were referred to the late Dr. Money at John Hopkins University, who in the wake of David’s death and the death of his twin brother in 2002 (both by suicide) became infamous for the case. To enable David to be able to experience heterosexual sex and have a “normal” life, Dr. Money persuaded the Reimers that David should undergo sex reassignment surgery, hormone therapy and become “Brenda”. David’s surgery marked the first time that sex reassignment surgery was performed on an infant without an intersex or DSD condition. Dr. Money had pioneered the procedure for intersex infants and planned to use the success of David’s surgery and his consequential gender re-socialization as an experiment to provide additional proof of the benefit of such surgeries for infants with intersex conditions or genital injury.

For years Dr. Money touted David’s case as a success despite David’s increasing despair, anger and confusion going back to when he was two years old and tore off his dresses. His mother (who also attempted suicide, in part due to the overwhelming guilt she felt for the plight of her son), reported to John Colapinto in his book As Nature Made Him: The Boy Who Was Raised As A Girl about David’s life that in elementary school David was so bullied that children would not allow him to use either the boys or girls bathroom so he was forced to relieve himself outside in an alley. When David was 14, as an urgent intervention to suicide, a local psychiatrist urged the Reimers’ to reject Dr. Money’s approach of complete concealment and tell David the truth about his body and past.

According to his 2004 article in Slate online, Colapinto says, “David later said about the revelation: “Suddenly it all made sense why I felt the way I did. I wasn’t some sort of weirdo. I wasn’t crazy.”

Once the truth was finally revealed, David began to live again as male, and went through multiple surgeries to undo the changes to his body caused by the estrogen therapy urged by Dr. Money.

David met Dr. Milton Diamond in the late 90’s and learned from him that the supposed success of his case was being used to justify similar surgeries on infants with intersex conditions, DSD, and genital injury. Outraged, he participated in a follow-up study in an effort to shatter the myths associated with his life and prevent them from being used to perpetuate such suffering and abuse onto other infants and children. The resulting study co-authored by Dr. Diamond and Dr. Keith Sigmundson in the Archives of Pediatrics and Adolescent Medicine made international news and opened up a debate still very much alive and impacting the lives of intersex children, adults, and their families.

David later agreed to a series of articles and than the above mentioned book. He even risked public ridicule and appeared on Oprah Winfrey to tell his story with the intent of protecting others and helping to uphold their basic human rights. You can view a brief Canadian Broadcasting Company (CBC) report from shortly after his death here. (Please note, it is sad and disturbing, but overall respectfully done).

Despite his dedication to advocacy and the positive impact he achieved, David continued to be haunted by the trauma of his youth. After his brother Brian committed suicide, David, who had struggled with lifelong depression became more deeply depressed. Not long after his brother’s death, David lost his job. Then his wife of 14 years requested a separation. On May 5^th, 2004, he took his own life. Even with all of the profound difficulty he faced, David Reimer contributed vastly and admirably to the struggle for the human rights of intersex and DSD people. Today, let’s honor not just his tragedy, but the enormous gifts he offered the world.

Finnish Pediatric Surgeon Denounces Intersex Surgeries

Mordecai Ettinger — Thu, 18 Apr 2013 22:02:26 +0000

Finnish Pediatric Surgeon Mika Venhola recently denounced corrective surgeries on intersex infants and children. In his youtube interview from early April, Dr. Venhola states that when he was obliged as a medical student to perform “corrective surgery” (you can see him use air quotes in the clip) on an intersex baby he felt, “it was such a huge human rights and children’s rights violation that he swore he would never do it again and [he] hasn’t.”

He was also moved to continue investigating if corrective surgeries were being performed elsewhere in the world and to obtain a consensus of his colleagues on the issue. What he found was that as of the late-90′s, most doctors were recommending and performing surgeries on intersex children despite the growing decent of intersex adults who survived these surgeries. Dr. Venhola calls this arrogance and continues to advocate among his colleagues for the rights of intersex people.

The interview goes on to discuss his insights on the medical approach to both intersex and transgender people. As an ally to both, he has a strong human rights analysis.

His final assessment provides an analogy that if you give a surgeon a hammer they are going to see a nail. Venhola urges that intersex children don’t need ‘a nail’, that they do not need to be ‘fixed’ and that medical intervention is only necessary in response to medical crisis.

More doctors stepping forward in solidarity means move power for the intersex human and civil rights movement. Thanks Dr. V!

The Pursuit of Happiness in Our Original Beautiful Bodies: Pidgeon Pagonis’ Recent Testimony before the Inter-American Commission on Human Rights

Mordecai Ettinger — Mon, 08 Apr 2013 19:34:12 +0000

The Ides of March (March 15th) marks a day of ancient betrayal, the assassination of Cesar, in the popular imagination of the West. Intersex youth, adults, and their communities are no strangers to such feelings. For the thousands of intersex children and adult survivors who have endured non-consensual genital surgeries, the medical institutions set-up to provide healthcare and healing instead frequently perpetuate grave harm, secrecy and stigma.

However, this March 15th, marked a historic opportunity for Intersex people and their allies to tell their own stories and self-advocate on an international scale. On this day, Jen ‘Pidgeon’ Pagonis, AIC’s Youth Leadership Intern, and a leader in Inter/ Act and the US Intersex rights youth movement provided testimony to the Inter-American Commission on Human Rights. The aim of this hearing was to begin a process in which the body would consider best practices for the treatment of intersex infants and children and determine if current practices, including involuntary sterilization and other forms of non-consensual genital surgeries constitute torture.

The Inter-American Commission’s hearing comes on the heels of the March 4th statement made by the United Nation’s Special Rapporteur on Torture to that body’s 22nd General Council. The statement, consistent with the decades long outcry of intersex people and their families, affirms that these procedures are clearly acts of torture.

Reflecting on her experience in providing her testimony, Pidgeon commented that she was more nervous than she had anticipated. This predicament surely was not helped by the fact that she had been up since 3 am, got pulled over by a traffic cop on the way to the airport and nearly missed her plane! Oh yes, and have I mentioned it was also her birthday?

Yet, she prevailed and her testimony had a powerful impact on the Commissioners, who thanked her for her comments and conveyed how profoundly affected they were by them. During her allotted time, Pidgeon over-viewed her medical experiences, the numerous surgeries she endured during her childhood and young adulthood. Through telling her story with frankness and candor, Pidgeon laid bare the reality for many intersex people like herself in the Americas and globally.

Along with her own story, Pagonis told the story of her peer and fellow Inter/ Act (link) member, Shana. This account further illustrated the impact of shame, stigma, and isolation on intersex people. Pidgeon also conveyed the unforgettable image of her recurrent nightmare: waking up upon a stretcher being wheeled from the surgery suite through a long hospital hallway with bright unforgiving lights blaring above her head and blood-soaked gauze between her thighs. Pidgeon left the commission with a clear message: “Intersex people deserve the right to the pursuit of life, love and happiness within our original, beautiful bodies.”

Mauro Cabral of the Global Action Trans Equality (GATE) Natasha Jimenez of Mulabi, and Paula Sandrine Machado, Phd, a Brazilian social anthropologist and intersex rights advocate also presented testimony. In consensus with Pidgeon and the majority of intersex people, at the hearing these presenters strongly decried non-consensual medical intervention of intersex people as mutilation. In response to the Commissioners’ inquiries regarding best practices, these presenters repeatedly stressed that there is currently no country or locality towards which to look which exemplify best practices; they simply do not yet exist.

To bridge this crucial gap, Pidgeon believes that, “change needs to come from the bottom,” from intersex people themselves. “There needs to be a critical mass of supporters and, ‘intersex’ needs to become a household word.”

Pagonis remains skeptical as to whether the recent increase of international exposure of intersex rights issues will significantly alter the practices in doctor’s offices and surgery rooms around the world, although she hopes the Inter-American Commission will follow the UN’s recent example and issue a statement condemning much of current medical practice for intersex people as torture. Pidgeon remains cautiously optimistic that if there is an newly emerging international consensus it may increase individual power for intersex people dealing with medical institutions. For now, it’s too soon to call, “Ask me again in six months or a year.”

On her last day in DC, Pidgeon visited the Smithsonian Museum. During her visit she received a stark reminder of the necessity of her testimony and for a mass movement to win the civil and human rights of intersex people. As Pidgeon entered an exhibit called The Origins of Life, she approached a series of artistic renderings of early humans. Looking at the images she encountered two young men who were gawking and laughing at them. One exclaimed, “Dude, I had one of those in my clinic this semester.” Pidgeon then realized the two men were medical students and that they were clearly discussing a patient with Turner’s Syndrome, an intersex condition which causes marked physical traits.

It was an overwhelming experience which highlighted the realities of being an intersex person, “ At one minute you could be speaking to an International body and then you can be silenced by ignorance and violence on the part of people who will soon hold a lot of power [as doctors]. It reminded me how much work still needs to be done.”

Pidgeon, along with a growing movement of intersex youth, is doing this work so future generations of intersex people will have better stories to tell, ones of celebration rather than torture and betrayal . Now that’s a good birthday gift!

For more of Pidgeon’s thoughts and writings, visit Inter/Act’s blog. View the full IACHR hearing here.

In Defense of Henry Enuta

Mordecai Ettinger — Fri, 29 Mar 2013 21:07:04 +0000

By Sean Saifa Wall, Co-Chair, Advocates for Informed Choice and Dr. Susana Morris, member of the Crunk Feminist Collective

On March 26^th, 2013 in Sapele, the Delta State of Nigeria, Pastor Henry Enuta was physically stripped and humiliated in public because he is an intersex person. According to news reports, he was almost killed by a lynch mob before being taken into custody by police. Most of the headlines covering this story grossly refer to Mr. Enuta as a “hermaphrodite” because he has genitals that are characteristically male and female. To sensationalize this story and humiliate Mr. Enuta even more, media outlets have published pictures of him bare chested and with torn clothes, holding onto his dignity while passers-by capture pictures of him with their mobile phones.

When I saw this story, I was horrified at how Mr. Enuta’s humanity was reduced to a mockery simply because his body did not conform to narrow standards of what a man’s body should be. For him to be forcibly stripped with no one to offer him clothes or rescue was atrocious. I was doubly astounded at how members of his community sought to kill him for the mere fact that he was different and considered some kind of freak. Nevertheless, given that this incident has taken place in Nigeria, I want to be very aware of my position as an African American queer intersex man living in the United States. People with intersex conditions living in the United States are just as vulnerable as intersex people living abroad. The medicalized and state sanctioned violence that impacts intersex people living in the United States is a pervasive, isolating, and silencing kind of violence that recreates stigma and shame.

In speaking out against this act, my goal is not to impose a critical, patronizing gaze on how people in Nigeria should respond to queerness or difference. Considering how the United States and Europe have responded to legislation that seeks to punish, kill, and “reform” queer people in Uganda, for example, I find myself both wanting to fight for the sovereignty of Black African nations and also asking those same nations to uphold the humanity and dignity of their queer and sexually differentiated citizens. Those of us committed to the upholding the dignity and respect of intersex people around the world must be willing to do the hard work of both checking our biases and privileges while also continuing to advocate for justice wherever injustice occurs.

We have witnessed a hazing similar to Henry Enuta’s experience on an international stage before with Olympic runner, Caster Semenya. A gold and silver medalist hailing from South Africa, Caster’s glory was shrouded by “genetic testing” to prove whether she was a “man” or a “woman,” since having XY chromosomes as a female athlete would give her an “unfair” advantage. Although we as a society should have used Ms. Semenya’s experience as an opportunity for education and reflection about gender identity and sexual differentiation in human beings, we instead responded with slander and ignorance toward a young Black South African whose goal was to compete in an international arena. What does Caster Semenya have to do with Henry Enuta? Simply put, both of their experiences reflect two cases of intersex African people whose reception in the media did nothing but reinforce our perceptions of intersex people as “freaks” and as “other.” I also bring Caster Semenya into this conversation because this freakish display and exploitation of African bodies is not unlike the colonial exploitation of Sarah Baartman, also known as the “Hottentot Venus,” a Khoi woman from Southern Africa who was toured around Europe as a spectacle because of her “enlarged” labia and “oversized” buttocks. Just as Sarah Baartman did not deserve this violation, neither do Caster Semenya or Henry Enuta deserve to be so unfairly and violently treated. It is critical that those of us fighting for intersex rights speak out against the public humiliation and violence perpetrated against these individuals.

In light of the U.N. Report on Torture in Health Care that includes intersex infants as a vulnerable population, I ask that we as a global community respect and uphold the integrity of intersex people wherever they work, live, play, and worship. I also ask that we continue to examine how racism and other forms of oppression lend themselves to the way we depict intersex people of color in the media. Given those requests, I hope that those responsible for the ill treatment of Mr. Enuta are held accountable by their community members, and that future coverage of this case respects Mr. Enuta’s dignity and person. As members of the movement to end violence and stigmatization of intersex people we must continue to stand united against injustice, while also moving forward in creating a world safe for all people.