Susan Massad, M.D. (1938-2021)

On November 29th, Susan Massad, M.D., a founding member of the East Side Institute faculty, passed away after an exceptionally beautiful and joyous life.

Susan was a dear friend, mentor and comrade—an activist physician and consummate community organizer whose steady hand and welcoming spirit impacted the lives of thousands. While she will be sorely missed, her important contributions to social therapeutics and to medical methodology and her living example as a radical humanist will forever be part of our global community of developmentalists.

Born in 1938 in New York, Susan grew up in Northern California a “red diaper baby” (daughter of activist parents). After completing her medical degree at the University of California-San Francisco, Susan moved to New York City and worked as the director of the general medicine clinic at Jacobi Hospital in the Bronx. There she met psychiatrist (and now social therapist) Hugh Polk, with whom she organized a coalition that brought hospital patients and their physicians together to fight for better health care. This short-lived union foreshadowed much of her work to come.

Once she met Fred Newman, Lois Holzman, Lenora Fulani and other founders of our development community in the early 1980s, she brought health and wellness work into the Institutes for Social Therapy in Harlem and the Bronx. During the AIDS plague of the 1980s and ‘90s, under Susan’s leadership, the Harlem and Bronx Institutes organized AIDSAFRAID, a series of community conversations to discuss the myths and fears that left people alone and disarmed with their illness.

Susan also launched grassroots “Healthy Clubs” in Harlem and the Bronx. She invited patients to join her in setting up blood-pressure screenings on street corners in working class communities and speak with people about becoming active in creating their own health. Years later, she said this work enabled her to “begin to respond to the question of what was needed for ordinary people, no matter what their level of disability or impairment, to develop their health and physicality.”

Working closely with Newman, this led to one of her most impactful contributions to community medicine and health: the health team. A health teams is a self-organized working group that includes the patient, care givers (including doctors), family and friends who meet regularly with the person facing ill-health and together take responsibility for helping to creatively navigate the fear, pain, institutional roadblocks, confusions and opportunities presented by the illness. Like all of Susan’s work, it is premised on the belief that illness and health are not individual problems; they are social challenges that need to be engaged socially. As Susan puts it, “The over-arching task of the health team is to continuously be engaging the question: How are we going to create the most developmental life possible that includes, but is not dominated by, the constraints and needs of a particular illness?” [You can read the story of Susan’s own end-of-life health team as reported in Kaiser Health News HERE.]

Susan was the first to bring social therapeutics to the training of medical doctors. In the late 1990s and early 2000s, working with the newly formed Performance of a Lifetime, Susan brought improvisation workshops into medical schools throughout New York City (and to medical conferences) empowering doctors and patients to create open, playful and philosophical conversations. In recognition of this work, Susan was named a “Doctor of the Year” by New York Magazine in 2004. In her award as the “Most Innovative General Practice Physician” in the city, the magazine wrote that she was “the first doctor in New York to teach other doctors through improvisational-theatre techniques to better listen to and interact with their patients.”

In 2017, outraged at the dehumanization of dementia patients and the isolation of their families and care partners, Susan and her Institute colleague and friend Mary Fridley pioneered a new approach to dementia care—a challenge to the “tragedy narrative” of dementia—in which patients are related to as members of an ensemble performance group. They devised playful/performatory workshops—”The Joy of Dementia: You’ve Got to be Kidding!”—that have been reimagined in a host of settings in the U.S. and internationally. Most recently, Susan and Mary co-founded the Reimagining Dementia Coalition, an active collaboration of over 600 partners.

Over the years Susan wrote and presented on the health team and the social therapeutic approach to medicine and health — writings that have been compiled in Medicine Across Borders: The Subjectivity of Health and Healing.

In addition to her contributions to the fields of public health and community medicine, Susan was a life-long community organizer and progressive activist. In the early 1980s she co-founded and helped to lead the Coalition of Grassroots Women, which played a significant role in bringing poor and working-class women of color together with white middle class professional women in support of struggles in the poor communities. She was a long-time builder of the All Stars Project which has for forty years brought the transformative power of performance to young people in poor communities. She served as chairperson of the All Stars Project’s Board of Directors from 1998 to 2005. In 2007 she founded, at the All Stars, the New Timers, an ongoing improv workshop for seniors, and was an active builder of UX, the All Stars’ free university-like school of continuing development, where she co-led with Dr. Lenora Fulani, the monthly workshop, ”Performing and Developing Beyond Diabetes.”

A life-long lover of theatre, visual arts and literature, in her later years Susan helped to devise a play, The Stoop, which drew on the participants’ experiences growing up in diverse New York City working class neighborhoods, and wrote the libretto for a short opera, The Crisis, based on her personal experience as a patient in an emergency room. She was also an avid collagist, short story writer and gourmet cook.

Our heart goes out to Susan’s long-time life partner Kate Henselmans, to her daughters Rachel and Jessica, all of whom are also organizers and builders of our development community — and to all who knew and loved her. Susan was a wonderful friend to many of us. For those of you who knew her — and those of you who know of her through others— we’d love you to share your memories, stories and thoughts. We have created a “padlet” (think: virtual creative-space) where you can share notes, poems, songs, photos, videos, sketches. Susan would love this, and we are excited to see what we can create.

Susan’s life work to create a more humane, equitable and developmental world where everyone has what they need to create their lives (including their health) will continue, as we make use of, share and further develop her discoveries.

Obituary