Adrienne Asch: An Appreciation
paul root wolpe is the Asa Griggs Candler Professor of Bioethics, Raymond Schinazi Distinguished Research Professor of Jewish Bioethics, and the director of the Center for Ethics at Emory University. He is an editor of the American Journal of Bioethics (AJOB) and editor-in-chief of AJOB-Neuroscience. He is also active in issues of Jewish bioethics, helping found the Academic Coalition for Jewish Bioethics and acting as bioethics advisor for both the Victor Center for Jewish Genetic Diseases and for JScreen, the program to promote preconception genetic carrier screening among Ashkenazi Jews in the United States.
Adrienne Asch's death has deprived bioethics, and the scholarly world in general, of one of its strongest and most distinctive voices. Best known for her passionate advocacy of a different perspective on disability, Adrienne also helped challenge conventional wisdom on reproductive rights, medical exceptions of conscience, feminist scholarship, and other fields. Trained as a therapist, a social psychologist, and a social worker, she also did academic work in philosophy and psychoanalytic psychology. She presented her often counterintuitive perspectives with a gentle fearlessness that gave her arguments a particular persuasiveness. Adrienne's writing and her personal impact will continue to challenge and enrich scholarly discourse for many years to come.
The death of Adrienne Asch on November 19, 2013, at the age of sixty-seven has left the fields of bioethics and disability studies without one of its most persuasive and articulate minds. Adrienne had an unparalleled way of describing the lived experience and social dynamics of disability. Her perspective was nuanced and often surprising; she did not wholly fit into any camp or philosophy. Nor did Adrienne think of herself as wholly, or primarily, a disability studies scholar. She crafted her own fully coherent and consistent way of understanding not only disability but illness, suffering, and the ideology and organization of medical care.
Adrienne was born in New York City, but grew up in the small town of Ramsey, New Jersey. Adrienne's childhood was defined by difference. Chief among them, from an outsider's perspective at least, was her iatrogenic blindness, the result of a misguided attempt by physicians of the time to help premature infants by cranking up the oxygen in their incubators. Over 10,000 infants went blind due to retrolental fibroplasia before Arnall Patz discovered the cause (by experimenting on infants—itself an interesting bioethical case study).
Adrienne, however, never saw her blindness as the defining characteristic of her life. Other kinds of difference were, in her opinion, far more powerful developmental determinants of who she was as a person: her family were Jews in a non-Jewish town, liberal democrats in a conservative community, and cosmopolitan and international in an environment that looked skeptically on such traits. She always credited her parents with inspiring her to take pride in being herself, as a blind person, as a political liberal, as a Jew. She grew up with an outsider's perspective, and from that vantage point she saw things that were opaque to others. (Adrienne, incidentally, was always interested in the use of vision as metaphor, and often used it herself—though sometimes ironically. She recognized and utilized its powerful role in common parlance, but also helped the sighted recognize how ubiquitous such visual metaphors were. We “observe” and “see” and “show” and “enlighten” and “open our eyes” and “have vision,” and so on. She also disliked the use of “blind” in the sense of “ignorant”—as in saying someone was “blind to” the implications of their position.)
Another important contributor to Adrienne's life was her time at Swarthmore College, where she solidified her political consciousness and was seduced by the intellectual life. Adrienne always saw herself very much as a child of the 1960s. She majored in philosophy, graduating in 1969, and then went on to the Columbia School of Social Work, receiving an M.S. in Social Work in 1973. Her first writings characteristically were about social welfare, and workplace needs. Adrienne was passionate about social justice, and worked for over ten years in the New York State Division of Human Rights as an investigator of employment discrimination cases. When she was hired in 1987 by Alan Weisbard to work on the New Jersey Bioethics Commission, Adrienne turned her attention more determinedly toward bioethics.
Adrienne also earned a degree in psychoanalytic psychology—she worked as a therapist for many years—and finally received a Ph.D. in social psychology, also from Columbia, in 1992. Her dissertation was not about disability or blindness, but about surrogate motherhood. Adrienne held many professional positions, including eleven years at Wellesley College and two at the Boston University School of Social Work. When she died, she was the director of the Center for Ethics and the Edward and Robin Milstein Professor of Bioethics at Yeshiva University in Manhattan. She also held professorships in epidemiology and population health and in family and social medicine at Yeshiva's Albert Einstein College of Medicine.
Bristling as she did at the idea that her lack of sight defined her, to Adrienne, the most difficult aspect of her disability—and by extension the main difficulty of so many other disabled people—was not the physical reality of blindness, but the strong investment others had in maintaining her identity as a “disabled” person. What was most significant to Adrienne were her intellectual, emotional, and interpersonal traits—that she was a bioethicist, or a leftist, or that she liked to laugh, or her love of Renaissance music. She resented that people saw her life as a tragedy. To Adrienne, being blind was simply a personal trait like being female, or white, or Jewish. She was puzzled and a little put off by people's interest in the technologies she used to compensate for her blindness—her braille keyboard was, as she saw it, no different from the iPads and computers and PDAs that sighted people used.
Adrienne Asch's wish in her work was to redefine disability in the minds of the public, to change people's understanding of what it means to have a disability. She wanted the redefinition to have impact in a number of different ways. She wanted people to understand that the disabled do not see themselves, and their lives, in the way they are portrayed by the (temporarily) able-bodied. She wanted people in general, and bioethicists and physicians in particular, to recognize the deeply ingrained biases that were reflected in their language, in their attitudes, and in their decision making. And she wanted people to understand that we are all disabled in our own ways, need aid and support, and only have a temporary purchase on whatever level of functioning we currently enjoy.
Adrienne's training as a social worker, a therapist, and a social psychologist gave her a broad range of intellectual tools to bring to bear on issues that engaged her. It was perhaps because her arguments did not fit neatly into any bioethical or philosophical camp that her perspective could be so challenging. She sometimes seemed self-contradictory, but her positions were well thought out. While Adrienne was a strong advocate for a woman's right to choose an abortion, for example, she fought hard against the legitimacy of choosing to abort a potentially disabled offspring.
How did Adrienne justify this seeming contradiction? She argued, first, that there was a fundamental moral difference between deciding that one did not want to have any child right now, and deciding that one did not want the particular child the fetus could become because of its traits. She extended that principle to sex selection as well. Second, she argued that a fundamental misconception of category plagued prenatal testing, where the potential child is reduced to a single trait. No trait is the sole defining characteristic of who a human being is, of the contributions the individual could make as a child to their parents and as an adult to society. In the same way that blindness did not define who Adrienne Asch was, the presumed disabilities of one's offspring do not define who they are or might become.
Adrienne's nuanced views on these issues sometimes created confusion among her critics, and sometimes challenged her as well. She considered herself both a feminist and a disability rights scholar, and saw those not only as compatible, but as mutually affirming. Adrienne saw disability rights as a feminist issue. She maintained that the lives of disabled women should be as much a feminist concern as those of able-bodied ones. Disabled women, she argued, had long been doubly marginalized: first because of their sex, and again because they failed to conform to a collective physical ideal—an ideal to which at least some able-bodied feminists subscribed.
Adrienne always brought a social element into her explanations of such seeming contradictions. To her, the problem lay not only in medicine and its view of disability and illness, but equally in public health. In one of her most influential essays in the American Journal of Public Health, Adrienne wrote:
When public health considers matters of sex, sexual orientation, or race, it examines how factors in social and economic life pose obstacles to health and to health care, and it champions actions to improve the well-being of those disadvantaged by the discrimination that attends minority status. By contrast, public health [I think she meant “medicine” here] fights to eradicate disease and disability or to treat, ameliorate, or cure these when they occur. For medicine and public health, disease and disability is the problem to solve, and so it appears natural to use prenatal testing and abortion as one more means of minimizing the incidence of disability…. [However,] most of the problems associated with having a disability stem from discriminatory social arrangements that are changeable, just as much of what has in the past made the lives of women or gays difficult has been the set of social arrangements they have faced (and which they have begun to dismantle).1
Part of the joy of reading Adrienne's oeuvre is that she could be disarmingly counterintuitive. For example, a controversial issue in bioethics has been the use of conscience exceptions—the right of a health care provider to refuse to provide a service due to religious or other ideological objections to a course of treatment. Because such exceptions have been used often against abortion services, or against pharmacists who distribute morning after pills, one might expect a strong objection from the resolutely pro-choice (but nuanced) Dr. Asch. After all, the common liberal position has been that a pharmacist, for example, should not be permitted to keep a legal drug from a patient because the pharmacist objects to its use. But to Adrienne the issue was different; a society that accepts pluralism and diversity should not force its members to behave in ways counter to their deeply held convictions. She wrote:
If a member of a health profession demonstrates that the tenets of his religion preclude performing actions that end embryonic, fetal, or born human life, then society should bear the burden of justifying why an individual should be expected to behave in ways that go counter to religious or ethical beliefs. The idea that, unlike most professionals, health care providers leave their personal moral beliefs at the door when they go to work and simply provide any service that is safe and legal does not reflect the daily experience of medical practitioners or provide a model that society expects them to adhere to. Physicians and staff who aid patients and families to remove feeding tubes are making moral, not merely medical, assessments of pain, suffering, and the benefits and burdens of continued life. To say otherwise denies that society often seeks and honors the moral voice of the professional. Allowing for conscientious objection legitimates this voice both for those who refuse to provide certain services and those who administer them on a regular basis.2
The paragraph reflects a characteristic of Adrienne's that struck almost all of her admirers: her fearlessness. Some who have already eulogized Adrienne have told stories of her intellectual and social fearlessness.3 It appears in her writing and in the fierceness with which she broke with conventional positions and kept fidelity with her controversial points of view. Proud of her identity as a bioethicist, not only a disability studies theorist, Adrienne borrowed from each field to enrich the other. She argued against a medical model of bioethical thinking that emphasized dyadic relationships and sequestered medical decision making for a more social model of illness. She had a sociological eye—trained as she was as a social psychologist—and recognized that the lived experience of disability was not the “tragic condition” portrayed by medicine. “The mainstream has too often accepted medicine's view that illness and disability inevitably diminish life's quality,” she wrote.4 Until clinicians can understand the experience of those they treat, or surrogate decision makers the lives of those entrusted to their judgment, the disabled will be at the mercy of those who see their lives as somehow less valuable or more burdensome than others.
Despite the difficulties of living alone as a blind person, and despite a number of other challenges, including surviving a house fire where she was badly burned, Adrienne lived a fiercely independent life, and counted among her friends people from almost every realm she touched. She was a staple at meetings such as the American Society of Bioethics and Humanities, the Society of Jewish Ethics, and others.
On a personal note, Adrienne and I spent many hours together at such meetings, either talking about intellectual issues, discussing her career and mine, or laughing about some silliness or other. She was very serious about the things she cared about, but enjoyed a good joke or a well-placed witticism. While Adrienne could be blunt, and sometimes a bit irascible, she was never intellectually dishonest. She understood and respected the opinions of those who differed with her, never accusing them of bad faith or wrong motives, but persuading them with the power of her argument. She once chastised me for hesitating to make a career decision that was obviously to my advantage but difficult for me to make, without being worried that I might take it the wrong way. She was a friend, so she was going to tell me when I was being foolish.
Adrienne was not a scholar of Judaism, and rarely wrote explicitly about “Jewish bioethics.” But she saw her Judaism as integral not only to who she was as a person, but to both the content of her work and the moral responsibility she felt in communicating it with rigor, and with generosity to the arguments of her opponents. To Adrienne, her Judaism was another of those traits that, while not solely defining her, informed and enriched her life and work, and was expressed in the integrity she brought to her unique voice.
It is a voice that will be sorely missed.
SELECTED ADRIENNE ASCH PUBLICATIONS
- Asch, Adrienne. “Critical Race Theory, Feminism, and Disability: Reflections on Social Justice and Personal Identity.” Ohio State Law Journal 62 (2001): 391–23.
- Asch, Adrienne. “Disability Equality and Prenatal Testing: Contradictory or Compatible?” Florida State University Law Review 30 (2003): 315–42.
- Asch, Adrienne. “Distracted by Disability.” Cambridge Quarterly of Healthcare Ethics 7 (1998): 77–87.
- Asch, Adrienne. “The Experience of Disability.” American Psychologist 39 (1984): 529–36.
- Asch, Adrienne. “Personal Reflections.” American Psychologist 39 (1984): 551–55.
- Asch, Adrienne. “Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy.” American Journal of Public Health 89 (1999): 1649–57.
- Asch, Adrienne. “Recognizing Death While Affirming Life: Can End of Life Reform Uphold a Disabled Person's Interest in Continued Life?” Hastings Center Report 35, no. 6 (2005): S31–36.
- Asch, Adrienne. “Two Cheers for Conscience Exceptions.” Hastings Center Report 36, no. 6 (November-December 2006): 11–12.
- Asch, Adrienne, J. Bickenbach, and D. Wasserman. “Mending, not Ending: Cost-Effectiveness Analysis, Preferences and the Right to a Life with Disabilities.” In Disabled People and the Right to Life, edited by L. Clements and J. Read, 30–56. New York: Routledge, 2008.
- Asch, Adrienne, J. Blustein, and D. Wasserman. “Criticizing and Reforming Segregated Facilities for Persons with Disabilities.” Journal of Bioethical Inquiry 5 (2008): 157–67.
- Asch, Adrienne, and Michelle Fine. “Disability Beyond Stigma: Social Interaction, Discrimination, and Activism.” Journal of Social Issues 44 (1988): 3–21.
- Asch, Adrienne, T. Jefferies, and J. Taylor. “Prenatal Testing.” In Our Bodies, Ourselves: Pregnancy and Birth. Edited by the Boston Women's Health Group, 109–27. New York: Touchstone, 2008.
- Asch, Adrienne, and R. Marmor. “Assisted Reproduction.” In From Assisted Reproduction to Stem Cells: The Hastings Center Bioethics Briefing Book for Campaigns, Journalists, and Policy Makers, 5–9. Hastings, NY: The Hastings Center, 2008.
- Asch, Adrienne, and N. R. Mudrick. “Blindness and Visual Impairment.” In Encyclopedia of Social Work. 20th edition. Edited by T. Mizrahi and L. E. Davis, 1:206–14. New York: Oxford University Press/ Washington: NASW Press, 2008.
- Asch, Adrienne, and Eric Parens. “Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations.” Mental Retardation and Developmental Disabilities Research Reviews 9 (2003): 40–47.
- Asch, Adrienne, and M. L. Shanley. “Involuntary Childlessness, Reproductive Technology, and Social Justice: The Medical Mask on Social Illness.” Signs: Journal of Women and Culture in Society 34 (2009): 851–74.
- Asch, Adrienne, and A. Stubblefield. “Growth Attenuation: Good Intentions, Bad Decision.” American Journal of Bioethics 10 (2010): 46–48.
- Asch, Adrienne and D. Wasserman. “Making Embryos Healthy or Making Healthy Embryos: How Much of a Difference between Prenatal Treatment and Selection?” In The “Healthy” Embryo: Social, Biomedical, Legal and Philosophical Perspectives. Edited by J. Nisker et al., 201–19. New York: Cambridge University Press, 2010.
- Asch, Adrienne, and David T. Wasserman. “Where is the Sin in Synecdoche?: Prenatal Testing and the Parent-Child Relationship.” In Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability. Edited by David Wasserman, Jerome Bickenbach, and Robert Wachbroit, 172–16. New York: Cambridge University Press, 2005.
- 1.Adrienne Asch, “Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy,” American Journal of Public Health 89 (1999): 1650.
- 2.Adrienne Asch, “Two Cheers for Conscience Exceptions,” Hastings Center Report 36, no. 6 (November-December 2006): 11.
- 3.Rachel Adams, “Adrienne Asch: Improving the Linkage of Bioethics and Disability Studies,” Voices in Bioethics, March 12, 2014, http://voicesinbioethics.org/2014/03/12/adrienne-asch; David Wasserman, “Adrienne Asch: Memories of a Close Friend and Collaborator,” Hastings Center Report 44, no. 2 (2014): 15–17; Susan Wolf, “What Adrienne Knew: Living Bioethics,” Hastings Center Report 44, no. 2 (2014): 17–19.
- 4.Adrienne Asch, “Recognizing Death While Affirming Life: Can End of Life Reform Uphold a Disabled Person's Interest in Continued Life?” Hastings Center Report 35, no. 6 (2005): S32.