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.
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.