Resolve: Healing the Legacy of Intersex/DSD Treatment

Competition Finalist

This entry has been selected as a finalist in the
Patients | Choices | Empowerment competition.

Approximately one in 2,000 children is born with variations of sex anatomy. Many undergo repeated surgeries to make them look more “normal.” Intersex adults have long argued this treatment is harmful, but anger and defensiveness among patients and doctors blocks change. Resolve breaks this impasse with the power of apology.

About You

Organization: Advocates for Informed Choice Visit websitemore ↓↑ hide↑ hide

Section 1: You

First Name

Anne

Last Name

Tamar-Mattis

Organization

Advocates for Informed Choice

Country

United States, CA, Sonoma County

Section 2: Your Organization

Organization Name

Advocates for Informed Choice

Organization Website

Organization Phone

707-793-1190

Organization Address

POB 676, Cotati, CA 94931

Is your organization a

Non‐profit/NGO/citizen sector organization

Organization Country

United States, CA, Sonoma County

Your idea

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Name Your Project

Resolve: Healing the Legacy of Intersex/DSD Treatment

Country and state your work focuses on

United States, XX

Describe Your Idea

Approximately one in 2,000 children is born with variations of sex anatomy. Many undergo repeated surgeries to make them look more “normal.” Intersex adults have long argued this treatment is harmful, but anger and defensiveness among patients and doctors blocks change. Resolve breaks this impasse with the power of apology.

Innovation

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What makes your idea unique?

The idea of medical apology in any context is new, but gaining ground. Leading medical schools are piloting apology programs for medical errors. The American Medical Association recently issued an apology to African-American physicians for their history of discrimination. Resolve’s innovation takes medical apology to a new level: healing the relationship between the medical community and an entire patient community.

Ongoing communication between doctors and patients is critical for effective medical care. Otherwise, how can we know if treatments really help? Controversy has raged between medical and intersex communities for years over current treatment models, but little has changed. Medical providers and parents need the perspective of intersex adults to provide the best care for these special children. However, because their anger over past treatment they perceive as mutilating has never been recognized, it is difficult for many intersex adults to trust doctors. Meanwhile, doctors who treat intersex people feel unfairly attacked after years of doing the best they could to help. Many have discounted the voices of former patients by portraying them as “radicals,” stating that the “silent majority” of intersex people are satisfied.

By respectfully inviting individual providers and professional associations to listen to intersex adults and apologize for the harm suffered as a result of medical treatment, Resolve offers a radical model of equal relationships between doctors and patient. We recognize patients as valuable sources of expertise, and doctors as only human. More importantly, we encourage healing on all sides that will improve care for future children.

Do you have a patent for this idea?

Impact

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What impact have you had?

Our pilot case was a historic success. Last year, an intersex woman approached AIC with a request. She was born with atypical genitals as a result of a medical condition. In an effort to make her look like a “normal” girl, her doctors had removed her clitoris in infancy. They told her parents never to tell her what had happened. Throughout childhood she was exposed to humiliating displays at the teaching hospital where she was treated, being made to show her genitals to one resident after another. Such treatment was standard for children like her.

As an adult, she wanted to take action to be sure that nothing like this happened again. She didn’t ask to sue her doctors, though. She wanted an apology.

AIC asked her former caregivers to listen to her story. At first they were defensive. They had always done their best, and they had followed accepted protocols. Finally, after extensive negotiations, two leading hospitals and the prominent physician who had overseen her care recognized that she had suffered real harm as a result of her treatment, and they offered sincere expressions of regret. To our knowledge, these are the first such apologies.

This experience helped our client to heal emotionally from years of trauma. It changed the doctors involved, too. They are taking action to improve care, to be more aware of privacy, and to reduce unnecessary interventions. Hearing her story and the act of apology helped them to see intersex patients in a new way.

Problem

Around 1 in 2000 infants is born “intersex”: with sex organs not easily labeled male or female. Many of these children are repeatedly subjected to genital surgeries and other interventions aimed at “normalizing” their bodies. These procedures are rarely medically necessary and there is no clear evidence of benefit. They can lead to scarring, loss of sexual function, incontinence, depression, difficulty forming relationships, and sterility. Sometimes, providers choose the wrong gender. Adults who experienced these procedures as children say only the individual has the right to choose whether to face such risks.

Controversy has seethed for years over this practice, with little change. Because their rage over past treatment has gone unacknowledged it is difficult for many intersex adults to work together with doctors. Meanwhile, many doctors feel unfairly attacked. Doctors and parents need the perspective of intersex adults in order to best help children. We must find a better channel for communication.

Actions

AIC uses multiple strategies to protect the human rights of children with variations of sex anatomy. This project, Resolve, brings together intersex adults and youth, parents of children with intersex conditions, and medical providers to address the painful history of medical treatment of intersex people and improve conditions for children today. Together, we seek first to hear each others’ stories and acknowledge the harm done by past treatment practices informed by secrecy, stigma and shame. Next, we facilitate apologies from individual doctors, hospitals, and medical organizations to individual intersex people and to the community as a whole, as a matter of justice and a means to reconciliation. Finally, we work together to create multiple channels for ongoing communication among stakeholders, so that parents of these children and medical providers can make decisions informed by the perspectives of those who know what it is like to live with an intersex condition.

Results

Resolve’s carefully structured discussions will help medical providers hear the stories of former patients in a new way. Building on the success of our pilot case, we will facilitate and publicize more apologies -- individual and institutional. When doctors express regret for harm caused by medical treatment, healing becomes possible for doctors and patients. This is an important result in itself, and will change the atmosphere of stigma, shame, and fear informing medical treatment of intersex people.

Another result will be a change in current treatment practices. Astonishingly, intersex adults still do not have a place at the table in considering medical protocols. Many harmful practices, like excessive exams and medical display of children’s genitals, happen without careful consideration of the patient’s perspective. Once professionals have acknowledged the harm this causes, change will follow. Improved communication between the intersex and medical communities will result in improved care for today’s children.

What will it take for your project to be successful over the next three years? Please address each year separately, if possible.

Year One will involve planning, raising awareness of our project, and building relationships among stakeholders (parents of children with intersex conditions, medical professionals, and intersex adults). We will select one or two additional cases to pilot, publicize the apologies, and seek allies in the medical community. Success will require adequate staffing to build relationships carefully, strong relationships in the intersex community, and brave and creative allies in the medical community.

In Year Two, we will launch a more comprehensive community reconciliation strategy. We will invite a diverse group of stakeholders to participate in a series of facilitated roundtable discussions. We will include representatives of groups who have been most aggrieved by past events – such as intersex adults who suffered harm from medical treatment and caregivers who have been emotionally wounded by the accusations of intersex activists – and who are willing to commit to listening to the other side, finding paths to reconciliation, and moving forward to help today’s children. We will film portions of the roundtable to create a tool for ongoing education. Success will require strong community relationships, adequate funding for the roundtable, which we have budgeted at $12,000, and for the film, which we have budgeted at $8,000.

In Year Three, we will consolidate the first two years’ lessons and create tools for others to use: producing materials to help intersex adults approach their own providers for apologies, offering provider training, and distributing the roundtable film. We will interview thought leaders in the patient and medical communities about their reactions to our work, and summarize these conversations in published articles and other written tools to support other patient communities who wish to make similar efforts. Success at this phase will require ongoing dedicated staff time, a positive reputation in the medical world, and a strong marketing plan.

What would prevent your project from being a success?

Fear, mistrust, anger, and defensiveness are the major barriers we must overcome in order to be successful. Many intersex activists are extremely angry about the harm that was done to them by those who were charged with their care, and may desire confrontation more than reconciliation. Many doctors feel that they have always done their best to care for their patients, and will be devastated if they fully recognize the harm that often resulted. Parents are often still grieving the loss of their expected “perfect” child, and have rarely received any meaningful support in that process. Furthermore, the idea of doctors apologizing to patients is a new one, which inspires a great deal of anxiety across the field.

In other words, the biggest barriers are emotional. There are few good models for doctors, patients and caregivers to communicate with each other about goals and strategies for health care. This is why it is crucial for us to have sufficient staffing and time to plan carefully, listen to stakeholders, and nurture relationships.

How many people will your project serve annually?

Fewer than 100

What is the average monthly household income in your target community, in US Dollars?

$1000 - 4000

Does your project seek to have an impact on public policy?

Yes

Sustainability

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What stage is your project in?

Operating for less than a year

In what country?

United States, XX

Is your initiative connected to an established organization?

Yes

If yes, provide organization name.

Advocates for Informed Choice

How long has this organization been operating?

1‐5 years

Does your organization have a Board of Directors or an Advisory Board?

Yes

Does your organization have any non-monetary partnerships with NGOs?

Yes

Does your organization have any non-monetary partnerships with businesses?

No

Does your organization have any non-monetary partnerships with government?

No

Please tell us more about how these partnerships are critical to the success of your innovation.

AIC (Resolve’s parent organization) has already established deep ties with the different communities of stakeholders. Several national intersex advocacy groups have members sitting on our board, we regularly attend national conferences for parents and affected adults, we serve as advisors to intersex treatment teams at hospitals, and we regularly present at medical conferences and write for medical publications. We are respected as a source of accurate information and as an organization that can effectively build bridges in a field torn by controversy. This reputation was crucial to the success of our first apology effort: our client found us through intersex community leaders and we developed a relationship with the hospital through a doctor who was a member of our advisory board.

We will draw on these ties to locate participants for the Resolve project, to negotiate future apologies, and to spread the word as the project grows. Already, a medical magazine at a major university is working on a story about our first apology, and intersex adults as well as leading physicians in the field have approached us about future efforts.

What are the three most important actions needed to grow your initiative or organization?

1) We must better educate funders about our population and the value of our work. While we are experiencing great programmatic success and a growing demand for our services from parents, intersex adults, and medical providers, funding remains our biggest challenge. This innovative program is off many funders’ radar: they simply do not perceive children with intersex conditions as part of their constituency. Others find the issue confusing or “too radical.” Our novel strategies do not fit many traditional funders’ expectations for legal or medical services. Many are reluctant to take on a new issue at a time of cutbacks, especially one that is unfamiliar and difficult to explain.

2) We will build relationships with leaders in the appropriate medical fields who believe that apology to intersex adults will serve the ends of justice and healing, and who have the vision to see that it is possible and important.

3) We will design a comprehensive media strategy to publicize past apologies, support the quest for further apologies, and to document the effect of apology on patients and doctors. Broad exposure in the mainstream and medical press, as well as social media outlets, will maximize the impact of our project, and will encourage adoption of our model in other patient communities. AIC has had great success in placing articles in medical journals and magazines, and has gathered extensive earned media coverage for past campaigns. We will leverage this exposure in designing Resolve’s campaign.

The Story

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What was the defining moment that led you to this innovation?

Sometimes we are obligated to work for change simply because we can. AIC’s founder, Anne Tamar-Mattis, has long been an involved ally of the intersex community. She came to this issue through her partner of 16 years who is an intersex activist and physician. That connection brought many close friends who are intersex, and their anger and sadness at their medical treatment touched her deeply. When she went to law school many of her intersex friends asked why it was so hard to change medical practice, and whether the law could do anything to help. As she studied the problem, she found that there were strong legal protections for children with intersex conditions, and that a modest effort at this moment in history could make a profound impact. But no one had even tried; there were no legal services available focusing on intersex issues. She realized that with her research, her law degree and her connections with the intersex and civil rights legal communities she could make a difference in the lives of children with intersex conditions.

AIC launched its operations in 2007 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 protecting the rights of children with intersex conditions. This historic meeting established AIC as a consensus-builder in a community that has been marked by internal struggles. In setting our priorities, we resolved to fight hard when we find clear violations of children’s rights, but we also determined that fighting was not our primary strategy. We would focus on using creative strategies of community lawyering and restorative justice to bring stakeholders together around the thing they all cared about: the well-being of these special children.

When we were approached by an intersex woman who wanted an attorney to help her request an apology from her former doctors, we knew we had found an important strategy. (See story above.) It may have been our legal credentials that initially got her hospital’s attention, but it took the work of many people to bring the apology to fruition: brave activists, compassionate providers, and path-breaking administrators. Once we saw the profound impact on all involved, we knew that the project needed to grow.

Tell us about the social innovator behind this idea.

Anne Tamar-Mattis has been working as a community organizer, youth worker, non-profit manager, advocate, trainer, and attorney for more than eighteen years. She spent six years as the Director of the LYRIC Youth Talkline, a youth peer-support phone line, and was the first Program Director for the San Francisco LGBT Community Center, establishing many of the programs that still exist there today. She graduated from the University of California, Berkeley, School of Law in 2006.

After graduation, Anne founded Advocates for Informed Choice (AIC) where she serves as Executive Director, through an Equal Justice Works fellowship. She was awarded an Echoing Green fellowship to continue her work in 2008. AIC is the first organization in the country to undertake a coordinated strategy of legal advocacy for the rights of children with intersex conditions. Recent accomplishments include assisting in a successful asylum claim by an African mother of a child with an intersex condition whose lives were threatened in their home country, and collaborating with leading bioethicists to instigate a federal investigation of possibly unethical research on pregnant women who may be carrying a child with an intersex condition. AIC is changing the conversation about intersex in the medical world by bringing the legal and human rights of children into the dialogue, and by bringing parents, physicians, and activists together around their shared concern for children.

Anne teaches as an adjunct professor at the University of California, Berkeley, School of Law. She is in demand as a speaker around the country on topics relating to legal and ethical issues affecting children with intersex conditions, including such venues as UCSF Children’s Hospital, Yale Law School, and the Lawson Wilkins Pediatric Endocrine Society. Her writing has been published in the Berkeley Journal of Gender, Law & Justice; the Journal of Pediatric Endocrinology and Metabolism; and Endocrine Today. She and her partner are the parents of two children.

How did you first hear about Changemakers?

Through another organization or company

If through another, please provide the name of the organization or company

Echoing Green

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213 weeks ago Patricia Deegan said: Hey. I think this is a really important project. Thanks for raising my consciousness about this issue. Those of us in the psychiatric ... about this Competition Entry. - read more >
213 weeks ago Jacquelyn Caglia said: Congratulations on being selected as a finalist! about this Competition Entry. - read more >
213 weeks ago Resolve: Healing the Legacy of Intersex/DSD Treatment has been chosen as a finalist in Patients | Choices | Empowerment.
220 weeks ago Anne Tamar-Mattis said: Thank you for the feedback! I have added some information about our media strategy. Anne about this Competition Entry. - read more >
220 weeks ago Anne Tamar-Mattis updated this Competition Entry.
220 weeks ago Anne Tamar-Mattis updated this Competition Entry.
220 weeks ago Anne Tamar-Mattis updated this Competition Entry.
220 weeks ago Anne Tamar-Mattis updated this Competition Entry.
220 weeks ago Chelsea Brownridge said: Hi Anne, I appreciate the thoughtfulness that went into your idea and entry. I am curious, though about how you plan to leverage ... about this Competition Entry. - read more >
221 weeks ago Anne Tamar-Mattis updated this Competition Entry.