In the wake of Adrienne Asch’s passing, I take the opportunity to share some of my thoughts about the contributions of disability studies to my teaching. I teach an introductory class in ethics and the goal is to get the students, mostly non philosophy majors, acquainted with some of the major dilemmas. I teach the usual controversial issues for this part of the world—the southern U.S.A. So you can imagine that topics such as abortion, the death penalty rank high. However in the past years I decided to add the topic of physician-assisted suicide. It surprised me how the students who are typically so devoted to the concept of life would see the issue of physician-assisted suicide as uncontroversial. I would show them the Oscar winning movie, The Sea Inside, about the true life case of a man who had become a quadriplegic and his request in getting legally sanctioned help in ending his life. It really surprised me that the students were completely in favor of his request and saw no need to challenge it on any aspect. I decided this was a great opportunity to change the manner in which I presented the issue and to include some readings by disabled theorists. I did not want to present the topic of disability within a section on the right to end one’s life as I felt I was simply reproducing the typical manner in which disability is encountered. However, I took it as my only opportunity within this course and I chose readings, such as the one by William Peace, `Comfort Care as Denial of Personhood’ in the Hasting Center Report (2012), to show the prejudice persons with disability may face in an emergency room because their lives are not valued. In addition, I showed part of the movie The Sessions. This is a Hollywood-type movie, but the point I wanted to make is captured well in the movie: individuals who have disabilities have meaningful lives. I am not sure how many of the students reacted to this but I do know that one of them came to me and said that she had really enjoyed those readings and that she had not really given much thought to the issues of disability except to think that disability meant misfortune. I am glad to have reached at least one student. Disability studies have opened such an incredible area of scholarship for me and now it has helped me challenge students. Thank you to those brave and extraordinary scholars such as Adrienne Asch who have made us reflect more deeply about embodiment, prejudice and a more just world.
As academics concerned with systems of oppression, the situation facing adjuncts and contingent labor in the university is both troubling and hits very close to home.
This is especially true because it is this labor that makes many of our sabbaticals, light teaching loads, and positions possible in the first place.
A growing movement is shining light on the unlivable conditions faced by contingent labor and many graduate students in the university, including an eForum hosted the House Committee on Education and the Workforce Democrats, who are “interested in learning more about the working conditions of the over one million contingent faculty and instructors at U.S. institutions of higher education, including part-time adjunct professors and graduate teaching assistants, and how those working conditions may impact students’ education.”
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This is a guest post by Nathan Emmerich. Nathan Emmerich is a Visiting Research Fellow at Queen’s University Belfast where he has been working on Bioethical Expertise. He took his PhD from Queen’s and this was recently published as a book entitled ‘Medical Ethics Education.’
On Thursday the 21st of November the Court of Appeal in Northern Ireland (NI) gave its judgement in a case between the Attorney General for NI, John Larkin, and the Senior Coroner for Northern Ireland. The case concerned whether the Attourney General could compel the coroner to convene an inquest into a still-birth. The coroner had declined to do so, arguing that it did not fall within the remit of his office. Briefly, as the role of the coroner is to investigate deaths there had to be an individual who was, legally speaking, alive and had subsequently died. Thus coroners in NI and, for that matter, the UK have not historically held inquests into still-births. A lower court had previously upheld the position of the coroner and that judgement alluded to some of the concerns I raise here.
The question of when life and, in particular, human life begins and ends has been persistent and contentious in biology, philosophy, theology and law. In bioethical thought there are a number of different accounts where it is common to distinguish between the start of life and the point at which a human organism attracts moral importance. Furthermore we might think that the human organism has different moral weights depending on the state of its development or, for that matter, demise. Such consdierations lead in a variety of directions, not least to the provocative argument that neonates might not meet the requirements for ‘personhood’ and therefore should not be considered (full) members of the moral community. It is not easy to resolve these ethical conundra and they will continue to trouble bioethical scholarship for the foreseeable future. However, the law cannot afford the luxury of uncertainty. Whilst we might recognise some degree of complexity and attempt to mediate between competing demands, ultimately the law has to adopt a position on when the ‘human organism’ becomes an individual, recognised by law and, therefore, a (legal) person.Continue reading
It’s truly gratifying to see an international United Nations agency taking a strong interest in women’s health and rights. UNAIDS (the Joint United Nations Programme on HIV/AIDS) has long championed a human rights-based approach to HIV/AIDS. Their current efforts are summarized in the communication that can be found here.
Readers may be interested to learn that the initiative to include pregnant women in biomedical research is gaining steam. To follow this progress, please check the following website: http://secondwaveinitiative.org/
And–just as the movement to lift severe restrictions on abortion is taking place in a number of developing countries–below is some bad news from the United States, which I received in a message from the National Advocates for Pregnant Women.
“On January 15, 2013, the Journal of Health Politics, Policy and Law published a study, “Arrests of and Forced Interventions on Pregnant Women in the United States, 1973-2005: Implications for Women’s Legal Status and Public Health,” written by Lynn M. Paltrow, NAPW Executive Director, and Jeanne Flavin, Professor of Sociology at Fordham University and NAPW Board President. This study makes clear that post-Roe anti-abortion and “pro-life” measures are being used to do more than limit access to abortion; they are providing the basis for arresting women, locking them up, and forcing them to submit to medical interventions, including surgery. The cases documented in our study, as well as recent cases, make clear that, 40 years after Roe v. Wade was decided, far more is at stake than abortion or women’s reproductive rights. Pregnant women face attacks on virtually every right associated with constitutional personhood, including the very basic right to physical liberty.
Our study is already getting enormous attention, including this story in The Guardian, “Study finds widespread ‘criminalisation of pregnancy’ in US institutions.” Please help us amplify the message and expand the reach of our unprecedented research by joining the conversation on Twitter using the hashtag #NewJaneCrow.”
This post originally appeared on the Medical College of Wisconsin Bioethics Listserv. It is posted here with permission from the author.
I have known Adrienne since the mid-1980s, when she approached me after I had given a talk for the NY Bar on the then current Baby Doe case, highlighting what I saw as the problematics of our stereotypes and fears of disability as they played into the public discourse. Adrienne was pleased with my comments, and that began a long, mutually respectful, and wide-ranging friendship. We subsequently worked together on a number of task forces at the Hastings Center, and I later hired her as senior staff for the New Jersey Bioethics Commission. Ironically, she landed at Yeshiva some years after I left it.
For those who didn’t know her well, Adrienne was one of the cadre of premature infants exposed to excessive oxygenation in her incubator, resulting in retrolental fibroplasia, the source of her blindness. Some of you undoubtedly know that finding the right balance of oxygen for at risk premies continues to be a controversial topic and a problematic area for research.
Adrienne showed incredible determination to live a full and productive life. Like some others with her disability, she was subject to accidents, and was badly burned in a household fire. Despite these discouragements, she persisted in living with fierce independence. Her ability to make use of the latest technologies for doing her work was awesome, and I remember her dragging her multiple heavy machines, along with an overstuffed suitcase, to various meetings and conferences. She was indomitable.
Adrienne was probably best known for her work on disability rights, but her interests were wide-ranging. At times her commitments to the disability community came into tension with some of her other values and commitments, particularly her feminism. She struggled to reconcile her commitment to reproductive rights with her aversion to prenatal diagnosis and abortion of disabled fetuses. Her perspective was sometimes elusive to utilitarian-minded philosophers in particular; I recall several debates in which she contested Peter Singer and others who too readily assumed the limited value of a life with disabilities. Adrienne’s thought was rooted in real life experience and a subtle understanding of social attitudes; she could be impatient with what she saw as the airy, and often arid, abstractions beloved by a certain company of philosophers. Her points were sometimes subtle and not easily framed in the customary language of philosophical bioethics. It could take a modicum of patience and considerable intellectual openness to fully appreciate her insights and perspectives; I know I learned a tremendous amount from her over the years, both from her analysis and from her person and the way she lived her life. She was both deeply thoughtful and emotionally complex.
Adrienne placed tremendous value on her many close friendships and longed for a life partner, and the ability to have and rear a child. Sadly, these desires were never fulfilled, and that was a source of great disappointment.
Adrienne was a remarkable human being, virtually one of a kind. She greatly enriched my life and was a powerful source of inspiration to me, and to many others. I will miss her tremendously.
Alan Jay Weisbard (Madison, WI)
This is a guest post by Alice Dreger of Northwestern University
Adrienne Asch, PhD, director of the Center for Ethics at Yeshiva University, died on November 19, of cancer. Adrienne was a pillar of American bioethics, the scholar to whom bioethicists often turned when wanting to discuss disability. Particularly in the 1990s, Adrienne challenged bioethicists to get beyond the medical model of disability, not always successfully, but always with a charitable patience tinged with occasionally biting impatience. I came to know her through the Surgically Shaping Children project at the Hastings Center, a project led by Erik Parens. Erik and Adrienne also worked together on the critically important Prenatal Testing and Disability Rights project, work that remains central to bioethics conversations about disability and parenting.
By all accounts, Adrienne was surrounded by much love in her last months. Unsurprisingly, tributes to Adrienne have been numerous and warm. You may wish to read the remembrances from Michelle Meyer or Christian Munthe. For my part, I’m stuck on one memory of Adrienne. We were at the West Point hotel for a meeting of the Surgically Shaping Children group, and she asked me to come to her room to check her outfit, to make sure her necklace went with her blouse. She tried, in that way, to always be appropriate in the sighted world, even when she was there to tell it her world was really just as bright.
Alice Dreger, PhD
An infographic by the team at College Degree Search
Assuming that this is an accurate story–and determining that would be part of the job–what should bioethics’ response be? I’m not sure there’s anything distinctively feminist at issue here, except insofar as we are specially committed to prioritizing care and concern about others in our responses to states of affairs, and acting to advance those values. (Although even a hard-line proponent of mere justice would surely be upset at what appears to be going on. . . .)
But the question on my mind is this: Johns Hopkins is a top bioethics school with a large number of bioethicists of various kinds. Although I wouldn’t expect any of them–or the program as a whole–to be aware of this situation, once it has become public, what is it reasonable to expect of the bioethicists or the program as a whole? And if the answer is that they have no special responsibility to take this on, can the field really justify its existence? Granted, it would take some courage even for tenured bioethicists to take on such institutional corruption, but my question remains: do we stick to our own small areas, on the model of scholars in many other fields? Or do we also have a duty to take time out to address such flaming monstrosities?
Over the last week news outlets—from Der Spiegel to the Wall Street Journal—have reported that Germany has become the second country to permit a “third” gender option for the birth of children (Australia was the first). These reports suggest that the aim of the law is to allow parents to defer a decision regarding sex assignment in cases where a child’s sex anatomy is not clearly male or female.
But while the measure may appear to be a progressive response to the recognition of the violations wrought by the standard of care for children with atypical sex anatomies, activists in Germany and elsewhere have suggested that the new law does not in fact address the serious violations committed in response to the births of children born with atypical sex anatomies.
The Swiss activist group, Zwischengeschlecht provides a concise and emphatic summary of the problem:
The new German birth certificate law is NOT about making an optional ‘3rd gender entry’ available for the intersexed, but in fact prohibits ‘ambiguous’ children to be registered as ‘M’ or ‘F. ‘Therefore, for the persons concerned, this new law is stigmatising, bound to result in more mutilating ‘genital corrections’, and generally bad news – quite contrary to the ‘uplifting’ ‘gender progress’ fantasy the media made out of it, at the expense of even more mutilated children, again.
Children’s assignment is not a matter of parental choice, but remains a medical decision. Without normalizing interventions, children born with atypical sex anatomy will be assigned this third category. In the view of Zwischengeschlecht, the creation of new categories of persons begins to look like another way to make of those with atypical sex anatomies “the problem.” What if we do not see atypical sex anatomies as the problem, but understand the problem instead to lie in social intolerance of anatomical variation, and the imperative of normalization that attends this intolerance? Framed in this way, a solution to the problem will not be the creation of new categories of persons, but the prohibition of unnecessary and nonconsensual medical interventions.
The deadline for submission for this issue is September 1, 2015.
Laura Purdy and Wendy Lynne Lee
“Which questions moral philosophers choose to study—and choose not to study—is itself a moral issue,” wrote Virginia Warren in her groundbreaking 1979 article. Indeed, bioethics has often focused on important, but relatively narrow issues based on the assumption that health is a natural lottery and that the chief moral questions have to do with the quality of care, and fair access to it, or with the implications of new technologies to treat or cure, and questions about reproduction and death. Of course, some writing has always acknowledged many influences on health and thus longevity, encouraged, no doubt, by scholarship in epidemiology, the social determinants of health, interest in food/agriculture issues, and concern about occupational and environmental pollution.
This special issue of IJFAB aims to examine, through a feminist lens, human activities such as fracking, that, by negatively impacting the environment, threaten health.
Science fiction, such as Cormac McCarthy’s The Road, abounds with post-apocalyptic nightmares, but rarely devotes any attention to how they came about or whether they could have been prevented.
Yet, as ever more paths to environmental disaster are opened up by corporate and governmental decisions, the preventable is being touted as inevitable, natural, and good.
Many of us now live in disbelief at the deliberate dismantling of the conditions required for human (and nonhuman) flourishing by people apparently oblivious or disdainful of the consequences. If these forces continue to prevail, it is only a matter of time before the consequences of widespread lack of access to clean water, air and land pollution, desertification, and deforestation, will drastically reduce human life spans, and quite possibly lead to human extinction. The process will exacerbate the fight for survival at all levels, from the individual to the national.
We encourage readers to think about the many ways human activities are putting at risk human health, shortening lives, and risking species suicide.
Public good vs. Property Rights
Precautionary Principle vs. Cost/Risk/Benefit
Feminist environmental bioethics
Energy Production Policy
Drugs (Legal and Illegal)
Exploitation of Public Assets
Our main goal is to evaluate the health consequences of activities intended to maintain and expand dependence on fossil fuels, and technology in general, especially that held to be necessary for sustaining rapidly growing populations, no matter at what cost to the environment. These goals, in turn, reflect the needs and interests of continued western hegemony. We encourage potential contributors to contact us for a more detailed description of possible topics. In addition, we hope for submissions on the many related topics not listed here, such as mountain top removal, tar sands development, or as yet unidentified threats.
From the New York Times:
In Uganda stigma, poverty, and familial obligations frequently prevent women from getting the treatment they need for breast cancer before the disease becomes lethal.