Countway Speaker Series: Dignity and Defiance with Leila Segal In-Person
DIGNITY AND DEFIANCE: THE VOICE OF GLIOBLASTOMA
Advocate and author Leila Segal in conversation with Rabbi Lila Kagedan about visibility and a new ethic of care for those living with brain cancer
Hosted by the HMS Center for Bioethics and Countway Library
About the Topic 
Few glioblastoma patients are able to speak from within the disease, and few of their caregivers have the resources to do so. What is the cost of our not hearing those most intimate with the terrain?
Leila Segal was caregiver to her husband, New York Times foreign correspondent Rod Nordland, through six years of glioblastoma. Both wrote continually as they survived and cared for one another. As long as Rod could hold a pen, he wrote – and when he no longer could, he wrote with a finger in the air. Sharing from this testimony and her intimate photography, Leila joins Rabbi Lila Kagedan to consider how we preserve autonomy, dignity and love even as body and brain are taken – and how we build communities that recognize worth in those whose brains are different, and in those who care for them.
About the Speakers
Leila Segal is an author, advocate, and certified nursing assistant. She was caregiver to her husband, the New York Times foreign correspondent Rod Nordland, through six years of glioblastoma – an experience that now drives her advocacy with brain cancer patients and caregivers, and a body of writing and documentary photography made throughout the illness. She navigated the US healthcare system from the inside, securing 24/7 home care for Rod on appeal against New York State Medicaid. She speaks to healthcare workers and students on the realities of brain cancer.
Born in London, Leila trained as a barrister and went on to found Voice of Freedom, an advocacy charity enabling survivors of human trafficking to tell their lives in photography and text, with exhibitions including Amnesty UK and Matrix Chambers. She is the author of the short story collection Breathe: Stories from Cuba (flipped eye) and the memoir You Came Back, written during Rod’s illness.
Rabbi Lila Kagedan, MTS, MEd is the Dean of Ethics and Professionalism at New York Medical College School of Medicine. She sits on the ethics committee at Westchester Medical Center as well as Cambridge Health Alliance where she serves as an ethicist and chaplain. Lila also holds appointments at the New York Medical College School of Health Sciences and Practice and the Touro School of Dental Medicine. As the first woman to become ordained in the Jewish Orthodox tradition and claim the title Rabbi, Lila is deeply curious about the intersection of faith and bioethics in society and public health. Lila is the Fellowship in Bioethics Curriculum Lead at the HMS Center for Bioethics.
