21
Jan2014

by William L. “Bill” Freeman, MD, MPH, CIP,* and Judy Norsigian** 

Adrienne Asch, PhD, a prominent bioethicist, died on November 19, 2013, at the age of 67. Her obituary was carried by both The New York Times and The Hastings Center. We both knew and admired Adrienne, and thus wanted to share some of our reminiscences with Ampersand’s readers.

Adrienne Asch was blind from birth as a result of prematurity. She received the standard treatment of the day, high dose oxygen, and, sadly, experienced one of the known side effects, severe retinopathy.

Adrienne utilized her experience of blindness to become one of the most brilliant, respected, and prolific teachers and writers on the spectrum of subjects that impact the lives of those living with a disability. She was the author of a number of books and articles, and her scholarship would have been a point of great pride for anyone. Adrienne was also a powerful and compelling speaker at a number of major scholarly meetings, addressing such topics as prenatal screening and genetic testing, including Gender and Justice in the Gene Age and The Tarrytown Meetings. Many who heard Adrienne speak or read her work, found her reflections on the assets of blindness, which she herself had experience, to be very powerful.

While on faculty at Wellesley College, Adrienne served as a board member of Our Bodies Ourselves (formerly known as the Boston Women’s Health Book Collective, Inc.) from 1998 to 2002, bringing wisdom, compassion, and mentorship during a critical time for the organization. She contributed to various editions of Our Bodies, Ourselves, and was a champion of women with and without disabilities.

We remember Adrienne as a teacher in all aspects of her life. For example, when, on occasion, a waiter would overlook Adrienne and ask someone else at the table for her menu selection, she would promptly respond to the waiter directly, in effect instructing all there about her own abilities.

Listening to one of Adrienne’s talks was always a deep dive into the complexity and nuances of the given topic. For example, she challenged those who primarily saw genetic testing as a means of enhancing informed choice by pointing out that such testing could “surrender social meaning to biological fact.” She further expressed her concern that widespread and otherwise indiscriminate genetic testing ceded to scientists the ability to shape the ethical and societal consequences of genetic predisposition, without the inclusion of key voices, such as those of persons with disabilities, gene carriers, and others.

Bill was first introduced to Adrienne through her extraordinary talk at PRIM&R’s 1996 conference, The Responsibility of Oversight Genetic Research and Technology Development. She spoke candidly and movingly about her own experience with blindness, and used her superb intellect to apply bioethical principles to the lives of those with disabilities. Her insightful analysis of the impact of reproductive and genetic technologies on people with disabilities was drawn from both scholarly philosophical and ethical analyses and from her own experience as a person living with a condition for which society’s physical, psychological, and social obstacles made it a “disability.” Adrienne eloquently lamented that genetics held great promise, to be sure, but that some research and clinical practices conversely held great risks for persons with “disabilities” and their families.

Until that point, Bill’s career had focused on different minority communities—American Indian, Alaska Native (AI/AN), and African-American populations. Hearing Adrienne’s discussion about individuals who were living with “disabilities” profoundly moved him, and helped him realize the parallels between people with disabilities and AI/AN, African American, and others, especially their shared strengths and resiliencies that were too often unrecognized. He has consequently become involved with Indian people and families with Down syndrome, mental illness, and blindness through his work at the Indian Health Service and Northwest Indian College.

In the wake of Adrienne’s passing, Bill expressed his gratitude by saying, “A sincere thank you, Adrienne, for your life-changing influence.” Judy reflected: “I will miss her friendship, her loving guidance to my daughter, Kyra, and all the many ways she had contributed to the PRIM&R community.”

Adrienne inspired so many of those she encountered by compelling them to not simply listen to her, but to  try to understand her experience—and those of others living with disabilities—and to assist them, on their terms, in their quest for a full life without the obstacles and impediments that society too often imposes. For Bill and Judy and for many others, Adrienne’s memory is, and will forever be, a blessing.

*William “Bill” Freeman, human protections administrator and director of tribal community health programs at Northwest Indian College and a member of the PRIM&R Board of Directors from 1994 to 2002, was first introduced to Adrienne and her work at a PRIM&R conference in May 1996.

**Judy Norsigian, executive director of Our Bodies, Ourselves and  a member of the PRIM&R Board of Directors since 1992, met Adrienne through her late husband, medical sociologist and disability rights activist, Irving Kenneth Zola, who had had known and worked with Adrienne since the early 1980s.

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