may their memories be for a revolution
FAYE GINSBURG
A widely-published and award-winning anthropologist and writer, Dr. Faye Ginsburg is the David B. Kriser Professor of Anthropology at New York University (NYU). Her first book, Contested Lives: The Abortion Debate in an American Community (1998), was a groundbreaking ethnography about activists on both sides of the abortion conflict in the U.S. and continues to reverberate today. Dr. Ginsburg is a leading scholar in the fields of indigenous media, ethnographic filmmaking, media anthropology, and disability studies. She is the recipient of a MacArthur “Genius” Fellowship as well as Guggenheim, Rockefeller, Ford, Pew, and other awards. Her scholarship in the areas of reproduction, gender, and disability have been influential since the 1980s. Since her daughter, Samantha Myers, was diagnosed with Familial Dysautonomia, Dr. Ginsburg has been a driving force in building disability awareness and support and showcasing the current surge in disability arts—at NYU, in New York City, and globally. Her book, Disability Worlds, researched and written with Rayna Rapp, will be published in May 2024 by Duke University Press. She is co-chair of the NYU Center for Disability Studies; the founder and director of the interdisciplinary Graduate Certificate Program in Culture & Media, as well as the Center for Media, Culture and History; and co-director of the Center for Religion and Media at NYU. As a leading feminist scholar at the intersections of many scholarly and artistic fields, Feminist Futures asked Dr. Ginsburg for her personal reflections on our current moment.
In January 2023, Narges and Sareh invited me to contribute to their important Feminist Futures project; it was still a promissory note at the time. Building on the energy of the feminist uprisings that began in Iran in September 2022 in response to the killing of Jina (Mahsa) Amini, they were seeking to sustain the feminist core of this uprising, to keep it from being pushed to the background. In particular, they underscore the distinctive features of the “Jin, Jiyan, Azadî”-inspired movement. Led by women, it is leaderless, rhizomic, and minoritarian-led. They asked if I could write a short critical reflection from the perspective of my own engagements with feminist scholarship and embodied activism to help support their project. I am honored to add my voice to the chorus that Narges and Sareh have assembled on their remarkable multimedia platform “to contemplate how we think, create, strategize, and organize movements in the present with a look back to the long histories of organizing in ‘leaderless’ ways, particularly in the face of networks of power which work to maintain the dominant world order. They provide a roadmap to how we got here, where we find ourselves now, and where we can steer to as we imagine new futurities in this moment together.” How could I resist joining forces with these two amazing next gen Iranian scholars/activists/performers/filmmakers in their effort to deepen connections among generations of feminists who have mobilized on so many related fronts in order to create what they call “a more habitable world order”?
They left the choice of topic up to me. Over the last 35 years, my own work as an anthropologist has been engaged with feminist cultural activism in different arenas, from the struggle over reproductive freedom and abortion rights in the U.S.; to the work of Indigenous media makers engaged in creating powerful counter-narratives to those that have denigrated their lives and stolen their land; to my three decades of work in disability rights and justice as an advocate, writer, scholar, and mother. The last was motivated by the birth of my daughter Sam in 1989, who at six months was diagnosed with a very rare and disabling Jewish genetic disorder: Familial Dysautonomia (FD). For my contribution to Feminist Futures, I decided to focus on disability activism, not only because research for “Disability Worlds” (the title of my forthcoming book with Rayna Rapp) has been my focus for the last decade. Additionally, Sam was the disability activist I knew best and most admired and her life intersected with that of Jina Amini in unanticipated ways.
“Sam and Jina are forever linked for me, even though their circumstances were worlds apart. For Jina, harsh misogynist laws imposed by the state created constant restrictions that ultimately were fatal for her while her death catalyzed activism in Iran and across the globe. For Sam, living with all the difficulties of FD was a daily challenge caused by a single-gene mutation, the limits of western medicine, and ableist realities.”
Sam left the planet suddenly and unexpectedly on 25 September 2022. She died of cardiac arrest in New York City at the age of 33, nine days after 22-year-old Jina Amini died on 16 September in a hospital in Tehran under suspicious circumstances. From 16–25 September, I was in the hospital ICU, hoping my daughter might emerge from a coma brought on by her heart attack. While there on my 24-7 vigil, I listened to the news to distract myself. I was stunned to learn about Jina’s terrible death at the hands of the Gasht-e Ershâd (Guidance Patrol), Iran’s “morality police” who arrested her for allegedly not wearing her hijab with sufficient modesty in keeping with government-enforced protocols. The Law Enforcement Command of the Islamic Republic of Iran initially claimed that Jina died of cardiac arrest and fell into a coma before being transferred to a hospital, a narrative that caught my attention not only because it mirrored Sam’s story, but also because it was so horrific. The claim about her death was undermined by women who were detained with Jina, who witnessed and told the world about the police brutality she suffered. Later, medical scans leaked to the media revealed head injuries leading to a cerebral hemorrhage. As is no doubt well-known to readers of this website, Jina Amini’s death led to widespread, huge, leaderless protests in Iran and across the globe, calling attention to the abuse that caused her death and more broadly, the injustice women endure under misogynist and extremely restrictive laws dictating how women can appear in public. Many demonstrators were injured and killed by Iran’s security forces who beat, shot, maimed, and murdered Iranian citizens protesting the compulsory wearing of the hijab and the terrible treatment of Jina and other women who had been detained.
Because of the uncanny coincidence of their deaths in September 2022 and because they each are associated with activism in distinctive ways, Sam and Jina are forever linked for me, even though their circumstances were worlds apart. For Jina, harsh misogynist laws imposed by the state created constant restrictions that ultimately were fatal for her while her death catalyzed activism in Iran and across the globe. For Sam, living with all the difficulties of FD was a daily challenge caused by a single-gene mutation, the limits of western medicine, and ableist realities. Sam was tired of being stared at on the street and being stuck outside of buildings she couldn’t enter due to lack of wheelchair access, sensory overload, and other issues. She had learned of the important disability activists who preceded her, like the amazing Judith “Judy” Heumann, known as the mother of the disability rights movement. Born in 1947, when America’s “ugly laws” prohibiting visibly disabled people from being in public were still in place, Heumann spent her life fighting for the rights of disabled people—for access to education, voting, public and private spaces, and many other basic rights that were finally guaranteed by the 1990 passage of the Americans with Disabilities Act. From 1993–2001, she served in the Clinton administration in the Office of Special Education and Rehabilitation Services, and went on to continue to advocate for disability rights across the globe. When I founded the Center for Disability Studies at NYU, I invited Judy Heumann to speak and we became friends. She always checked in on Sam to see how she was doing, and made sure to call her during COVID-19 closures when New York City was in lockdown. Watching the extraordinary documentary Crip Camp (2020), about the lives of Judy Heumann and her fellow disability activists, was a highlight of our quarantine activities. In May 2022, I had the honor of introducing Judy Heumann at NYU’s university-wide graduation in Yankee Stadium, where she received an honorary doctorate. Students mobbed her like the rockstar she was. Every person she met felt recognized by her incredible care and attention; brilliant, joyful and a badass, she had a huge heart and irresistible smile. She asked for my phone on the ride home so she could FaceTime Sam.
“She [Sam] had learned of the important disability activists who preceded her, like the amazing Judy Heumann, known as the mother of the disability rights movement. Born in 1947, when America’s “ugly laws” prohibiting visibly disabled people from being in public were still in place, Heumann spent her life fighting for the rights of disabled people—for access to education, voting, public and private spaces, and many other basic rights that were finally guaranteed by the 1990 passage of the Americans with Disabilities Act.”
Knowing about people like Judy helped spur Sam to become an advocate for those with FD and for disabled people more generally. For Sam, the decision to propel herself into public space happened in an instant. At age 10, she was home watching feminist activist and journalist Linda Ellerbee's Nick News, the popular and beloved American kid’s news show that ran in the 1990s. After watching a girl with sickle cell anemia tell her story, Sam decided it was time for people to learn about FD, and that she should be the one to do it. The next day, she wrote a letter to Make-A-Wish Foundation, requesting help with her mission to tell her story on television; they immediately said yes, and arranged for Sam to be on Nick News. In a 6-minute segment called “My Life,” she explained what it’s like to live with FD, with a charming and realistic portrayal of her life at a school for kids with learning disabilities, shots of her using her feeding tube, struggling with stairs, and playing and laughing with her friends. Soon after, Make-A-Wish asked her to be an ambassador for a year: quickly overcoming her fear of public speaking, Sam spoke about FD and on behalf of kids with disabilities on CNN, for the Lower East Side Girls Club, the Girls Congress, and many other places. When she was 13, she dedicated her Bat Mitzvah to raising awareness and funds to support people with FD. Sam was always modest about her activism, as ready to show off her collection of unusual telephones or talk about her favorite episode of Gilmore Girls, as she was ready to talk about political actions. Despite countless episodes in the hospital and many very difficult days, Sam was incredibly joyful, always kind, and had an absolutely infectious laugh.
“This is the kind of feminist activism that changes the world—confronting the government’s discriminatory laws, and calling each person just when they need to hear from you.”
When Sam died in September 2022, Judy must have seen my posting on Facebook. She was the second person to call me, after my sister. This is the kind of feminist activism that changes the world—confronting the government’s discriminatory laws, and calling each person just when they need to hear from you. On March 4, 2023, I started getting texts that Judy was in the hospital. She had suffered cardiac arrest, suddenly and unexpectedly. And then she too was gone.
May all their memories—Jina, Sam, Judy, and so many others—be for a blessing... and for a revolution.
Figure 1. Sam Myers on Bleecker Street in New York City during the COVID-19 lockdowns.
ABOUT THE AUTHOR
FAYE GINSBURG teaches at New York University where she is Kriser Professor of Anthropology, Director of the Center for Media, Culture & History, and Co-Director of the Center for Disability Studies. Her research over three decades has focused on cultural activists working on reproductive rights, Indigenous media makers, and disabled artists and advocates. She is author/editor of four prize-winning books; Disability Worlds (Duke University Press), co-authored with anthropologist Rayna Rapp, will be out in Spring 2024. She is the recipient of a MacArthur “Genius” Fellowship as well as a Guggenheim, Rockefeller, Ford, Pew, and other awards. She is also President of the Familial Dysautonomia Foundation.
