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10/11/2017

In Our Own Words: A Challenge to Share Our Own Stories

by Craig Klugman, Ph.D.

In a recent issue of Academe, sociologist Arlene Stein says that the disconnect of academia and the rest of the world is especially acute now, in a time when anti-intellectual fervor is flowing from the highest levels of the government. She states, “in the longer term, scholars need to be doing a better job of communicating what we do to those outside the so-called ivory tower… Telling stories about our work to those outside of university settings must be part of this strategy.“

by MK Czerwiec (ComicNurse)

In part, I think Stein means that we need to share our work (teaching and research) outside of the academy by speaking in public and by writing for public audiences. For the last five years, I have been writing this blog once or twice a week. In this space, I have analyzed health policy, new technologies, news items, concerns of social justice, and much more. In fact, this blog is my 276th posting over this last half-decade.

And in part, I think Stein is saying that we need to share how we became academics. If we can share our story with what we do, then perhaps others will understand our journeys and see that the work we do is relevant to everyday life. Many founders in bioethics have done this, writing books and articles describing their role in creating this field and in how they came to be in it.  Now I am not saying I am a figure who should be writing a “history of my bioethics” but I am saying that we all need to share our bioethics love story. Thus, to take Stein’s challenge to heart, I am sharing my story.

I grew up in a middle-class family in North-Central New Jersey. This was a small town surrounded by beautiful state parks with one road in/out, one stoplight, and not a single supermarket. My mother was a nurse who worked for Planned Parenthood in the clinic and later running their infertility program. My father was an estate attorney who helped people in real estate transactions as well as writing their last wills and testaments. Beginning in the mid-1980s, he also was helping people to write living wills. We read the local newspaper everyday with Sunday delivery of the New York Times and Daily News. Our dinner table was a place of conversation around what we did during our day and like most Jewish households, discussing current events and our lives. For us, that meant dinner conversations were often about my parents work: contraception, abortion (which Planned Parenthood did not perform though there were a lot of bomb scares called in by people who thought they did), advance directives, and death and dying.

In addition to my parents’ work, my paternal grandfather, to whom I was very close, died when I was about 8 years old. He had a sudden and unexpected heart attack in his mid-60s. His death hit me very hard as it was the first time I ever saw my father cry. About eight years later, my paternal grandmother was on her deathbed after not recovering from a second hip replacement. This being the mid-1980s, when she became unconscious the long term medical care facility was concerned that she was not eating. I remember accompanying my father as we were called out of Yom Kippur services to come to her bedside since she had taken a turn for the worse. Although my father did not want me to see her, I did see the clear plastic tube snaking into her nostrils and the soft straps tying her hands to the bedrails.

My father told the staff that he knew she was dying and he thought the feeding tube was keeping her from doing so. He asked the medical staff to remove the feeding tube and they refused, saying that legally and ethically, they could not. Being an attorney, he asked to talk to the administrator and the song and dance was repeated. He then yelled in his boisterous voice, “Either you remove that tube or I’ll stand on top of her and yank it out myself.” Those words, in that order and with that tone of voice, had a strong impact on my life. Those words appear in my film, Advance Directives, and, in a way, influenced my academic interest in end-of-life issues. The tube was quickly removed and the restraints were taken away. I was then officially allowed to see my grandmother. Where her face had appeared, twisted and scrunched in concentration before, it was now relaxed and peaceful. I remember the following afternoon my mom knocked on my door at home and told me “Grandma died.” I did not feel sad. I felt relief that she was no longer struggling to die. I said the Mourner’s Kaddish to myself and started setting up the house for the shiva that would soon commence.

When I was a sophomore in college, I enrolled in a class called Medical Anthropology (Anthro/Hum Bio 168). I was intrigued by other cultures and medicine, so this seemed like it brought my interests together. The course that term was taught by a UCSF anthropologist, Gaylene Becker, who was my mentor for many years. The course used anthropological research methods to explore issues in medicine. We had to conduct interviews with at least two medical professionals in different fields to learn about their work. For one assignment, I interviewed Ernle Young and Thomas Raffin who had just created the Stanford Center for Biomedical Ethics and had published a book, Intensive Care: Facing the Critical Issues (1989).  My second paper was with “Beth” who was a genetic counselor and we discussed the important ethical issues that she encountered in her work. I still have both papers (and I did get an A on both).

I later enrolled in a medical anthropology graduate program at Case Western Reserve University. My very first course there was “Ethics of Anthropology” (Anthro 463) with the anthropologist Woody Gaines. Half of the class were anthropology students and half were enrolled in the very first class of Masters of Bioethics students. I quickly realized my true love and what I had focused on in my undergraduate course was bioethics. Working with both departments I was able to complete both MA degrees nearly simultaneously. My bioethics thesis looked at the history of discourse on cloning, inspired by the recent birth of Dolly the Sheep. I also found an inspiring and supportive mentor in the bioethics program director, Tom Murray. He invited me to co-author a book chapter with him for a new volume on cloning. Tom also helped me find an interdisciplinary doctorate program which would allow me to further explore my transdisciplinary interests. He has encouraged me during every step of my career.

My journey into bioethics and health humanities is in part from an undergraduate that lit a fire in me. And in part, I have been fortunate to be mentored, encouraged, and advised by some of the founders of this field. But my passion, my love for bioethics and the health humanities traces back to those conversations with my parents around the dining room table. In some senses, I simply went into the family business.

What’s your story?

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