“The STAT piece, “Coercive Care: How Doctors Are Pressuring Sickle Cell Patients into Unwanted Sterilizations,” features the harrowing stories of women who now regret their decision to end their ability to have a child in the face of coercive medical practices. The cases allege that women were pushed into making abrupt decisions about their reproductive lives, where the complications of pregnancy for women with SCD were presented as almost certain death.”
FABGab Episode 2 is now live with Prof. Wendy Rogers talking about her work with Jacqueline Dalziell on “What Feminist Bioethics can bring to Synthethic Biology” available in Volume 16 Issue 2 of the journal here. It’s fascinating paper applying feminist analysis to specific cases in synthetic biology to think about relationships, commitments/promises, justice and power. Give it a listen here and let us know what you think.
This June the International Association of Bioethics (IAB) and Feminist Approaches to Bioethics (FAB) is meeting at the World Congress of Bioethics/FAB Congress in Qatar, where the new IAB President was announced to be Dr. Caesar Atuire. Dr. Atuire is a philosopher and bioethicist from Ghana working inter-continentally as the Ethics Lead for the Centre for Tropical Medicine and Global Health at the University of Oxford, as an Associate Professor of Applied Philosophy at the University of Ghana, and as an affiliate Instructor in the Department of Bioethics and Humanities at the University of Washington.
Dr. Atuire brings expertise in global health and ethics, decolonizing bioethics, and bridging conceptual and empirical bioethics, among other topics of research and scholarship, to leading the IAB.
Congratulations (and thanks) to Dr. Atuire for taking on this leadership role.
The COVID-19 pandemic brought the already growing industry of telemedicine into most of our phones, homes, and healthcare routines. Telemedicine–or the connection of patient and physician by virtual means such as videocall or secure messaging–has become a key lifeline for extending service across the gaps of American healthcare. In rural areas especially, physician shortages and hospital closures make accessing in-person healthcare challenging in the best of times. Add to that the travel restrictions, resource shortages, and increased clinical risk of a pandemic and we get conditions ripe for telemedicine’s explosion. Less discussed, however, are the forms of in-person labor on which even this virtual medical care continues to depend. Overlooking the necessary support offered by non-physician healthcare workers, unpaid home and community caregivers, and patients themselves will not just undermine the success of telemedicine – it will further erode the basic level of care undergirding society as a whole.
The promises of telemedicine are many: although increasing access to healthcare serves as a more altruistic motivation for the growth of telemedicine, the technology’s potential to decrease spending and boost efficiency is also compelling. Some have gone so far as to argue that telemedicine should become the default for routine medical concerns, leaving in-person visits as “Plan B.” Such a system, they argue, would be particularly beneficial for “patients with the most health care needs — the 5% that account for 50% of costs” by bringing “as much of the necessary care and social support into the patient’s home” (Duffy & Lee 2018, 8). Other healthcare researchers have projected that removing the medical encounter from the hierarchical environment of the clinic and (somewhat) obscuring patients’ racial and gendered presentations, telemedicine could even thwart implicit bias. (It’s worth noting, however, that this possibility depends on the equitable distribution and uptake of telemedicine, which hasnotbeen achieved.) According to bioethicist Jordan Parsons, both equity and efficiency make the adoption of telemedicine an imperative, so long as quality of care is not sacrificed.
Much of the concern articulated about telemedicine surrounds its impact on the doctor-patient relationship. Even if we grant that a physician can effectively diagnose and treat from a remote location – and it’s not clear that this is true across the board – the physical distance and technological mediation introduced by telemedicine present challenges for how doctors express compassion and build trust with their patients. Given that trust and compassion between doctor and patient are tied to ethically successful clinical encounters as well as better health outcomes, we would rightfully object to telemedicine if it placed these goods in jeopardy. But if our response focuses too much on improving the relationship between the patient and the remote physician, we risk obscuring and under-supporting the hands-on care that makes telemedicine work.
For instance, the hub-and-spoke model of telemedicine relies on outpost clinics with full staff who help virtually connect patients with physicians located elsewhere. Not only does the outpost clinical staff perform the clerical and administrative labor necessary to keep the operation running, they also perform physical tasks on the bodies of patients: a certified nurse’s assistant slides an inflatable cuff up a patient’s arm to measure her blood pressure; a physician’s assistant holds another’s foot in his hand to palpate painful joints. The physical proximity of support healthcare workers (HCWs) to their patients requires them to assume responsibilities that cannot be fulfilled by the distant physician. If bad news, like a poor prognosis, is given via videocall, the support worker present with the patient turns into the proximate other to whom the patient can respond in grief or anguish. These physical and affective exchanges, integral to the delivery of care, are neither eliminated nor fulfilled by the virtual physician but must instead be performed by another, likely more precarious, worker.
In the case of at-home telemedicine, the clinic does not so much recede into the background as it instead creeps into the household. Home-based visits are particularly common for the remote monitoring of chronic conditions, especially conditions that limit the patient’s mobility. Among the effects of “bringing the clinic home” is the involvement of family members and other unpaid caregivers in the medical visit itself. Whether assisting in the physical maneuvers of the exam or being present as emotional support, the at-home partner becomes the patient’s most direct source of care. While serving in similar capacities as the non-physician HCWs in the clinic, informal caregivers within the home typically lack medical training as well as labor protections, social status, and compensation.
Neither of these instances of hands-on care, whether provided by non-physician healthcare workers, informal caregivers, or patients themselves, is necessarily problematic. Community caregiving with telemedical support, for instance, may offer more interpersonal connection and context sensitivity than the average hospital. Encouraging self-care, moreover, may increase patient autonomy. But telemedicine’s way of delegating care to others does become a problem where it makes that delegation invisible and fails to provide resources to those doing the material work of caring for bodies. Without proactively distributing caring responsibilities and supporting the provision of care, experience has shown that the slack will be picked up by the most precarious among us: unpaid care labor disproportionately falls to poor women, both nationally and internationally, and is a significant driver of economic inequality. This maldistribution is both unjust and unsustainable, jeopardizing the wellbeing of the careworkers themselves and the adequacy of the care given.
In addition to the burden on individual precarious care workers, both paid and unpaid, neglecting telemedicine’s delegation of labor has serious consequences for society as a whole. Recently renewed conversations in both crisis management and political economy point to the care sector as the ground on which our social world is built. Without direct care for our physical, psychological, and social needs, no other human projects are possible. When we undermine our collective ability to provide for basic needs – as we do when we focus on technological development at the expense of hands-on care – we become, in Nancy Fraser’s words, like the tiger who eats its own tail.
This isn’t to say that we should give up on telemedicine, and its presence in our lives will certainly outlast the pandemic. But the expansion of telemedicine must foreground financial and social support for those providing the direct, hands-on care that remains essential even in our increasingly virtual context.
For related arguments, keep an eye out for my first book, The Limits of Care: Making Feminist Sense of Technology Relations, forthcoming with Oxford University Press.
This is a draft of the FAB 2024 Schedule. It is a final-ish draft which is always subject to a few changes. Please get in touch with Jackie and Anna with any questions…and we will try to do our best.
What drew you to bioethics? In other words, what’s your bioethics origin story?
My first undergraduate course in philosophy was an introduction to moral and political philosophy, and immediately I was hooked. My focus on bioethics didn’t come until later in my undergraduate career, when I took a fourth-year advanced topics course on conscientious objections in medicine at Trent University with Dr. Michael Hickson. My paper for that course examined whether parents who refuse pediatric vaccines on behalf of their children where a kind of conscientious objector. I knew back then I was interested in graduate studies in philosophy, so I used that paper for my applications to graduate programs.
The ethics and politics of vaccine hesitancy stuck with me—in my MA research project and parts of my PhD dissertation I continued to grapple with philosophical questions related to vaccine hesitancy and became especially interested in what a feminist perspective could bring to the issue. My thoughts on the topic have changed over the years and continue to evolve, but it’s fun to look back and see that that fourth-year undergraduate paper was really my bioethics origin story! My work on vaccine hesitancy pushed me to focus on public health ethics, and now I teach that same fourth-year advanced topics course on public health ethics.
Image of Nicole Fice, sitting on a tree stump and holding a bird in the snow, courtesy of Dr. Fice.
What next directions in your research are you most excited about?
I was recently awarded a small grant to begin a new project on the ethics of homelessness, so that is definitely what I am most excited about at the moment! Interestingly, it is an issue that hasn’t received much attention from philosophers or bioethicists, but I think it raises lots of challenging questions, including ones relevant to public health ethics.
My goal is to produce a report for local service providers and advocacy groups in the city that argues this particular By-law, and others like it, are morally problematic for a variety of reasons. For this part of the project, I’ve been meeting with awesome organizations like One City Peterborough that provide services and do a lot of advocacy surrounding issues like homelessness, so I am excited to continue to learn from them and collaborate on some public events on the ethics of homelessness in my city.
What’s a favorite think you do outside of bioethics that you can share with us?
When I have time, I love to craft! It helps to keep my hands busy and exercise my creativity. Knitting, embroidery, and pottery are among some of the crafts I’ve learned. Among those, I think pottery is my favourite, although it is the one I find the most difficult and the one that requires the most technical resources. During my PhD, I was a member of a community studio where I learned to throw pottery on the wheel. Getting my hands dirty was a great way to relieve some stress! Unfortunately, I haven’t joined a new community studio since moving to a new city, but I have been trying to keep up with some of my other crafts like knitting. I hope to return to pottery soon! Image of pottery cup and teapot courtesy of Nicole Fice.
What’s something published in the last few years that you’re excited about or found really helpful?
I recently read Barrett Emerick and Audrey Yap’s new book, Not Giving Up on People: A Feminist Case for Prison Abolition. Although they are writing about prison abolition, I saw many of their ideas and arguments as being relevant to both theoretical and practical issues I focus on in my work on public health ethics, including homelessness. One aspect of their book that made me think a lot was their discussion of moral solidarity and moral abandonment, terms they draw on from philosopher Jean Harvey. They describe moral solidarity as “taking up an attitude of respect and concern for other people; it is fundamentally about recognition, perceiving and understanding them in their circumstances, and meeting them where they are” (27).
This conception of solidarity is interesting to me given that many others (including Meena Krishnamurthy and Angus Dawson and Bruce Jennings) have argued that solidarity of some kind ought to be an essential component of theorizing in public health ethics. One thing I’m interested in is comparing the accounts of solidarity that have been given in the context of public health ethics and comparing it to various public health issues to think about which account is most appropriate and why.
Overall, what really stood out to me in Emerick and Yap’s work is their conception of moral abandonment. Following Harvey, they describe moral abandonment as the alternative to moral solidarity, which “[leaves] the victim of injustice further isolated, degraded, and diminished within the larger moral community” (28). In their book, they argue against moral abandonment and the ways in which incarceration institutionalizes moral abandonment because it is “a way of giving up on people as a society” (88).
While I don’t have the space to fully summarize their arguments or develop my views here, I want to mention a few things I continue to think about in relation to their arguments on moral abandonment. The first is an experience I’ve had when teaching my fourth-year class on public health ethics. In that class, we have one week that covers homelessness and another week that covers harm reduction and drug addiction. I think these are the two most controversial topics I’ve ever taught—and I teach a lot of controversial topics, including oppression, privilege, pornography, etc.! I think of these topics as controversial given some of the reactions I get from (some, not all) students. A few students, when discussing the ethical issues related to homelessness or drug addiction, seem to have an attitude that indicates they have given up on people who are homeless or people who use drugs. Emerick and Yap’s book, along with Harvey’s work, helped me understand that attitude as expressing a kind of moral abandonment, which is largely informed by pervasive social stigmas and negative stereotypes about people experiencing homelessness or people who use drugs (who are, going back to Emerick and Yap’s focus on incarceration, often criminalized).
This relates to a second thought I had reading their book, which is how to address such attitudes when they arise, especially in my own teaching. This is something they discuss in later chapters of their book, too. For my own purposes, one thing I might test out next year is assigning some of Emerick and Yap’s book to read when we cover homelessness and drug addiction. A final thing I continue to think about is how public health ethics generally and public health policymakers in particular might have to address moral abandonment.
One question I had was whether are there ways in which public health or other social policies institutionalize moral abandonment in the same way incarceration does. This seems plausible to me: some examples might include the By-law I mentioned above, which essentially criminalizes homelessness. If the By-law in part functions merely to evict people sleeping in tents from public parks and does not offer meaningful alternatives to better their situation, it might look like the city is giving up on people experiencing homelessness. Should public health experts and policymakers argue against such approaches? What would advocating for shifts away from moral abandonment in public health and social policy making look like? Taking inspiration from Emerick and Yap, I think these questions are ones I’ll continue to think about and work on moving forward!
We look forward to hearing more about those next projects, Nicole! Thanks for sharing about your background, work, hobbies, and what you are looking forward to next with the IJFAB Blog readership.
Dr Kathryn MacKay was the amazing host of FABGab a podcast talking to authors about their papers published in the International Journal of Feminist Approaches to Bioethics. The episodes provide great overviews and insights into papers and the writing process.
Kathryn had to step back from this role and Dr Emma Tumilty and Danica Davis have recently taken over. Emma is an Assistant Professor in the Department of Bioethics and Health Humanities at the University of Texas Medical Branch (UTMB) and Danica is a PhD student at the University of Otago Bioethics Centre. Through this dual-host format they hope to continue Kathryn’s great work and bring authors to the fore through discussions on their work and how it came about. They’re still working out the kinks of being new podcast hosts and settling in to working together, but will be releasing new episodes monthly.
First up for 2024 is an episode with Assoc. Prof. Vicki Toscano now available here – check it out! A transcript is also available (thanks to the support of Johnna Wellesley, PhD candidate at UTMB also) through the show notes.
Thanks again to Kathryn for starting something that helps bring more feminist scholarship to a wider audience and thanks to Vicki for being a great first guest on the podcast in its new form.
Joan Llorca Albareda & Pablo García-Barranquero, “Old by obsolescence: The paradox of aging in the digital era,”Bioethics (online April 2024): Connects contemporary aging process to phenomenon of technology obsolescence influencing social perceptions and valuations of age.
Alexandra Kapeller, “Phenomenology and empowerment in self-testing apps,”Bioethics (online April 2024): Considers the senses in which mHealth apps might be considered empowering for patients and, after rejecting several interpretations, draws on critical phenomenology to capture the potential of mHealth apps to shift users’ ways being-in-the-world.
Jessica Olivares, Emma Tumilty, Lisa Campo-Engelstein & Kathryn A. Cunningham, “Confidence in Care Instead of Capacity: A Feminist Approach to Opioid Overdose,”The American Journal of Bioethics (online April 2024): Mobilizes the ethics of care and relational autonomy to confront opioid overdose, prioritizing evidence-based medicine and harm reduction that fosters long-term trusting relationships between patients and providers.
Melissa Rees, “The Social Epistemology of Clinical Placebos,”The Journal of Medicine and Philosophy (June 2024 issue): Proposes that a social epistemological approach to understanding placebos better differentiates placebos from both everyday occurrences increasing positive outcomes and standard medical treatments.
T. Baron, E. Svingen, R. Leyva, “Surrogacy and Adoption: An Empirical Investigation of Public Moral Attitudes,”Journal of Bioethical Inquiry (March 2024): Examines general popular attitudes towards surrogacy and adoption in the UK in the interest of gauging response to proposed reform allowing “double donor” surrogacy.
Zhaochen Wang, Yuzhi Fan, Wenchen Shao, “Social egg freezing and reproductive rights justification: A perspective from China,”Bioethics (May 2024 issue): Considers and rejects rights justifications for egg freezing for social reasons, arguing that more pressing reproductive rights may need to be prioritized before expanding the use of social egg freezing.
This installment of the Feminist Bioethics Scholar Spotlight series features Regina Müller. Dr. Müller is a postdoctoral researcher at the Institute of Philosophy at the University of Bremen. Her professional background is in philosophy, history of arts (University Regensburg), and applied ethics (University Jena). Her primary research areas include applied ethics, in particular digital ethics and medical ethics, theories of justice, and feminist philosophy. Regina’s research is driven by a strong interest in feminist-ethical perspectives and their interplay with digital developments and medicine. Currently, she is working on her “Habilitations” project at the University of Bremen about moral perspectives on social structures. Regina is co-founder of the Young Medical Ethics Network (JMED) and initiated the research working group “Feminist Perspectives in Medical and Bioethics“ (FME) in Germany.
What drew you to bioethics? What is your bioethics origin story?
My journey into feminist bioethics began when I started studying philosophy. During my philosophy studies, my fascination with ethical issues grew rapidly. This interest led me to pursue a Master’s degree in applied ethics, where I had the opportunity to specialize in medical ethics. It was relatively clear to me that I wanted to stay in this field after my studies. I decided to do my PhD in medical ethics with a focus on ethical issues in the context of hereditary chronic diseases. My research in several medical ethics projects at different universities in Germany revealed to me the great scientific community and the broad spectrum of topics. As I transferred to my postdoctoral phase, my research expanded with a new focus on ethical issues in the context of digital healthcare. As I had the opportunity at the beginning of my postdoc phase to think intensively about what is important to me and what topics interest me, I decided to focus more on justice and incorporate feminist perspectives into my work. That’s how I got into feminist bioethics and I’m excited to see where the journey will take me. Feminist bioethics is such an important and stimulating working field that I wholeheartedly recommend it to anyone looking for a diverse and exciting area of work.
What next directions in your research are you most excited about?
I’m currently most excited about my postdoc project at the University of Bremen. The focus of my project lies in exploring the widespread use of the term “structural” in contemporary public and academic discussions on injustices. The term “structural” is usually used in these discussions to indicate that injustices, such as discrimination in healthcare, lie not in the sole responsibility of an individual actor, but are somehow rooted in overarching social structures.
(photo courtesy of Regina Müller)
At this point, I am grappling with three questions: firstly, what defines structures? Secondly, how can we morally assess these structures? And thirdly, what constitutes good structures? Typically, moral discussions revolve around the goodness or badness of consequences, characters, or actions. I’m fascinated by the question of whether structures can also be deemed morally good or bad. Is it meaningful to discuss structures within a moral dimension? To answer these questions, I need an understanding of structures on the one hand and an understanding of the good on the other. So, I have to delve into both social theory and moral philosophy, and I’m particularly excited about the interplay between these disciplines and the insights it may yield to me.
What kind of issue do you think is most important going forward in bioethics, that the field needs to pay attention to or attend to in a different way?
I think there is a pressing need for more thorough investigations of discrimination issues, particularly within the bioethics discourse in German-speaking countries. Over the recent years, structural discrimination in medical practice, healthcare systems, and biomedical research have become more prominent in the field of bioethics and there is great potential to further address these issues, especially by emphasizing the concerns of marginalized groups and by using normative concepts such as intersectionality, relationality, and vulnerability. I’m keen to follow the authors and their coming work in this field.
Are there any fellow bioethicists whose work you always look out for and are excited to read?
I greatly appreciate my colleagues within the research working group Feminist Perspectives in Medical and Bioethics (FME) and the work they are doing. The group is comprised of researchers investigating various aspects of feminist bioethics, including for example intersectionality in medical research, feminist clinical ethics consultation, reproductive justice, digitalization, and feminist methodologies. The group serves as a collaborative platform, a valuable space for networking, interdisciplinary exchange, and cooperation. Its overarching goal is to establish and strengthen feminist approaches within the bioethics discourse in German-speaking countries, and I follow with great interest the endeavors of my colleagues as they shape the future landscape of feminist bioethics in Germany.
Thanks for speaking with us, Regina, about your interesting and international feminist bioethics work!
What is the book’s main argument and who is your main audience?
The central argument of Microaggressions in Medicineis that microaggressions in medicine exist, cause serious harms, and thus, ought to be taken seriously and avoided. To that end, there are two main aims of the book: one theoretical and one practical.
The theoretical aim is to reconceptualize how microaggressions have been understood and conceptualized by psychologists and philosophers. By and large, research on microaggressions has centered around and been understood on the basis of the acts committed by microaggressing agents. We call this standard account the act-based account of microaggressions. We introduce a number of problems with this account and on the basis of them, we propose understanding microaggressions anew to center the harms experienced by those on the receiving end of microaggressions. To that end, we call our account the harm-based account of microaggressions.
The theoretical aim is to reconceptualize how microaggressions have been understood and conceptualized by psychologists and philosophers. By and large, research on microaggressions has centered around and been understood on the basis of the acts committed by microaggressing agents. We call this standard account the act-based account of microaggressions. We introduce a number of problems with this account and on the basis of them, we propose understanding microaggressions anew to center the harms experienced by those on the receiving end of microaggressions. To that end, we call our account the harm-based account of microaggressions.
The practical aim of the book is to develop our novel harm-based account of microaggressions in medical contexts. In so doing, we hope that readers will better understand what microaggressions look like in medical contexts and have a more robust sense of their harmful consequences. Finally, we develop strategies for healthcare professionals to implement in order to minimize microaggressions and their resulting harms. Overall, we hope that the book will help to build contexts in which health justice can be realized.
We have written this book to be broadly accessible, relevant, and useful to a wide range of readers. Current and future healthcare professionals, health advocates, those interested in health justice (and injustice) and health equity will find great value in the practically oriented chapters (chapters 4-6) that develop our harm-based account of microaggressions in medical contexts. Each of those chapters begins with a case study and builds our account by centering the experiences and testimonies of patients who are members of marginalized groups. Health care professionals and administrators will be interested in the chapter that outlines practical tips at the individual and institutional levels for minimizing microaggressions (chapter 7) and the conclusion that develop guidelines for how to respond once you realize that a patient has experienced a microaggression. Psychologists and philosophers will be interested in the chapters that outline, critique, and reconceptualize how microaggressions have been understood over the last 50 years and introduce our harm-based account (chapters 1-3). Most broadly, anyone who has ever been (or will someday be) a patient will be interested in the core chapters of the book that take an intersectional approach to analyzing cases of microaggression in medicine (chapters 4-6).
Although different sections of the book might be more directly relevant to different groups of readers, we have intentionally written it to be accessible to readers who are neither academics nor healthcare professionals. A novel contribution of Microaggressions in Medicine is that we amplify the stories and experiences of diverse patients who often get sidelined in mainstream bioethical and medical discussions. We hope that people who are members of these groups will see themselves in and relate to the stories we tell. Our hope is that in reading our book, they will feel less alone as they navigate their own healthcare experiences.
How did you decide to collaborate on this project? What was the inspiration for your book?
We have written about the genesis of our work together in the Women in Philosophy Series of the American Philosophical Association Blog. There, we discuss the importance of collaboration in philosophy, especially professor-student co-writing, publishing, and mentoring. Our collaborative relationship began a decade ago when Heather was a student in Lauren’s graduate seminar, Foundations of Bioethics. Over the course of the semester – both inside and outside of the classroom – we engaged in heated discussions and critiques of Beauchamp and Childress’s seminal text, Principles of Biomedical Ethics.
(Image of Heather Stewart provided by Dr. Stewart)
We were both struck by their underdeveloped, and at times, reductive, account of harm in medical contexts. We came to see how their account obscures many of the more subtle, insidious, and yet all-too-common non-physical harms that patients experience. We were invigorated to explore these subtle forms of harm and injustice that were missing from mainstream accounts of harm in bioethics and medicine.
This led us to engage with the psychological literature on microaggressions. Microaggressions gave us the conceptual language and framework for making sense of the kinds of acts, comments, and gestures that are unintentionally committed by healthcare professionals and often go unnoticed by them, but that result in real and enduring harm to patients in the form of damaged trust relations, worse health outcomes, and sometimes even avoidance of medical contexts and institutions. In traveling down the microaggressions path, we discovered that there had been almost nothing written about microaggressions in medicine and nothing at all written about microaggressions that patients experience. Although we ultimately moved away from framing the project as a critique of Beauchamp and Childress, at its core, the book still challenges traditional bioethics for its glaring lack of attention to the experiences of members of marginalized groups.
This is one reason why publishing our book in Oxford University Press’ new series, Bioethics for Social Justice, is so important to us. The series aims to bring greater attention to the healthcare experiences and needs of people and communities who are often ignored within mainstream bioethics.
Our vibrant discussions provoked by close textual reading in a graduate seminar resulted in a series of articles and book chapters (see here, here, and here) that organically, and over the last 8 years, became Microaggressions in Medicine.
(Image of Lauren Freeman provided by Dr. Freeman)
What feminist approaches do you take in the book?
At its core, Microaggressions in Medicine is a work in feminist bioethics. It is both inspired by and shares a lineage in that tradition in that it aims to bring feminist theories, concepts, methodologies, and insights to bear on issues in healthcare practice. Specific feminist theories and concepts that we employ include feminist theories of oppression; feminist theories of harm; the concept/methodology of intersectionality; feminist social epistemology (including feminist standpoint epistemology and literatures on epistemic injustice and gaslighting); feminist theories of emotion (e.g., anger); and feminist philosophies of medicine. We also draw on insights from queer and trans theory and philosophy, philosophies of disability, fat studies, and philosophy of race. We bring these important and diverse areas of philosophy into dialogue with other academic fields, most notably, with psychology.
In terms of our broader feminist commitments, the book centers the lived experiences of diverse patient groups by telling their stories in their own words. To this end, we draw heavily on first-person testimonies and narratives. In so doing, we amplify the voices of those who have experienced and who continue to experience injustice and harm in healthcare settings and who often lack a wide platform for telling those stories and especially, for having their stories heard by people in positions of institutional and medical power. We aim to carefully work with and through their voices and experiences to advocate for the advancement of health justice.
Has anything been especially surprising/challenging/fun about writing this book?
In many ways, writing the book was a difficult and heavy experience, as is all research that confronts harms that occur in medical contexts or that reflects on injustice and oppression more broadly. The book deals with many sensitive topics, and does so by telling people’s real, first-hand, often traumatic stories. This brings with it the duty of re-telling those stories responsibly, doing justice to the individuals and their experiences. This becomes especially tricky when engaging with experiences that are not our own or that we do not share. The moral issue of including testimonies and stories of others is something we reflected on and struggled with through the process of researching and writing the book and is something we desperately hope that we got right. We are so grateful to the many individuals who shared their stories with us in the name of fighting for health justice.
It is also worth noting that even while dealing with heavy topics and the responsibility of carrying and sharing others’ stories with proper care, we have found real joy in the process of collaborating. At the end of this project, we are at a place of shared hopefulness about having planted seeds which we believe can help move the needle closer to health and social justice. We feel that hope every time people share with us how they relate to the stories we tell in the book and see their own experiences reflected in the cases we discuss, how our work made them feel less alone in their own health struggles, how we have given them the language to better understand and make sense of their experiences, or how grateful they are that we are doing this work. We feel optimism when healthcare professionals tell us that our ideas have made them see their own habits in a new light and that they are changing their practices or revising some of their language on account of having reflected on the tips and strategies that we develop. Ultimately, that is why we do this work. In the face of many challenges and difficulties, our readers fuel us to persevere.
Do you have any advice for scholars publishing in feminist bioethics?
Our main advice would be to seek out supportive communities of scholars, mentors, and editors who believe in your project and who will raise you up (while also offering critical feedback to improve the project and to ensure that it is achieving your aims). Part of this requires clearly delineating what your goals are by asking questions like, for whom am I writing (for patients, practitioners, philosophers, students)? and what do I want this project to accomplish? Having clear answers to these kinds of questions can help determine how you want to write (i.e., in a more academic or technical way vs. for a more popular audience) and where you want to place your work (in an academic philosophy journal, a medical or bioethics journal, in a textbook that students will be more likely to read, or as an op-ed or blog).
In our case, for example, we started out writing a highly academic book about microaggressions that waded deep into the weeds with regards to technical distinctions and nuances in the philosophical and psychological literatures on the topic. A few years into the writing process, however, and on the basis of some harsh, though ultimately extremely helpful feedback on early versions of our work, we realized that we did not actually want to be writing a book that would only appeal to and be read by academic philosophers and psychologists. We came to see that we really wanted to write a book for healthcare professionals and patients, since that is where we thought our work could have the greatest impact. Coming to this realization was difficult (since it required us to completely rewrite many chapters and to delete more words than we care to (re)count). But in the end, it was a liberating experience and resulted in much stronger and more impactful work. For editorial support, guidance, and sometimes, some tough love, we are grateful to Quill Kukla and Sean Valles, the editors of the Bioethics for Social Justice Series at Oxford University Press, and to Lucy Randall, our editor.
Relatedly and more broadly, we have found that having supportive communities is especially important when working on heavy topics, or topics which are deeply personal to yourself, your communities, or communities you care about. Reading about, reflecting on, and ultimately writing and speaking about people’s real experiences of medical harm, trauma, and injustice is, as we mentioned, extremely weighty and emotionally taxing. It is thus important to have a supportive community to let you know that it is okay to step back when you need to and to help you keep the larger goal – health and social justice – front and center, even when things feel heavy, difficult, or impossibly insurmountable. We are very grateful to have had each other and our shared feminist philosophy communities as we have developed this project over the years, and we look forward to being part of those supportive communities for others developing important projects in feminist bioethics!
Thanks so much Lauren & Heather for writing this book and sharing about it and the writing process with us!
For our first in our new Feminist Bioethics Scholar Spotlight Series we are thrilled to feature Desiree Valentine, PhD, who is currently an Assistant Professor in the philosophy department at Marquette University. Read on to learn more about Desiree, her work, and her interests, in this interview. Also please nominate scholars you would like to learn more about to be interviewed for the blog!
To start: what drew you to bioethics? What is your bioethics origin story?
In 2014, I was part of the first cohort of Ph.D. students to participate in a 3-week intensive summer workshop at UPenn to learn about bioethics as a field and integrate it into our doctoral work. My work had always been interdisciplinary with a focus on critical philosophy of race, queer theory, and feminist philosophy, but this was a chance for me to engage with issues related to social determinants of health, healthcare systems, histories of medical research, assisted reproductive technologies, race-based medicine, disability, and more. I found this to be really exciting and timely work that had many repercussions for the concepts I was studying and developing within critical philosophy of race.
Flash forwards a couple months. Garnering much attention in the news at the time was the story of a white lesbian mother who purchased and was then inseminated with the wrong donor sperm—she had chosen sperm from a white donor and received sperm from a black donor. She subsequently became pregnant, learned halfway through the pregnancy of the mishap, and gave birth to a healthy mixed-race child. The woman decided to sue the sperm bank for breach of warranty but also for wrongful birth. The story was sensationalized especially due to the second legal claim. Wrongful birth is a specialized type of tort-based negligence claim that implicitly assumes a parent would have terminated a pregnancy if they had been rightfully made aware of certain risks. These ‘risks’ of course have historically been related to potential birth anomalies, disabilities, or other thought to be medically pressing issues. But here was the case of a mother claiming that race itself was reason to declare a birth and the existence of her now child as wrongful.
Many news commentators claimed that the parents should simply be happy that they had a healthy child and that it was racist for them to claim specific harms had been leveraged against them because they had a nonwhite child. This claim seemed fairly uncontroversial, but it was only one part of the story I thought. What was of particular interest to me was the history of wrongful birth as a legal claim. It was steeped in disability-related eugenic impulses. That is, it assumed that the birth of a child with a disability could be an inherent “wrong” and something for which damages could be awarded. Media coverage seemed to elide this history and when it was brought up, it only served to heighten the racial offense of the case. To liken race to disability was thought to be repulsive, not because both relied on eugenic logics in this case, but because it was unfair to make nonwhite racialization an inherent ‘bad,’ like disability.
What this case suggested, however, and what I went on to argue in variouspieces was that we needed to historicize the relation between race and disability and understand how both have been subject to eugenic-minded constitution via harmful comparative mechanisms that helped justify oppressive practices and systems of inequity. What is needed is a way of understanding the history and politics of race and disability not through mutual distancing tactics, but a renewed attention to their co-constitution. In effect, my hope was that in developing what I called a political ontology of race and disability, we could forge more resistant solidarities between racial and disability justice.
So this is the legal case and controversy that began my interest in critical disability studies especially as it relates to critical philosophy of race. Central here was the issue of reproductive politics and ethics, especially as it relates to assisted reproductive technologies (ARTs). I’ve subsequently published more broadly on ARTs and their relation to race, disability, kinship, and the notions of ‘choice’ and ‘risk’ in prenatal testing, diagnosis, and potential termination of a fetus.
What next directions in your research are you most excited about?
My work on race and reproduction has brought me to engage with the framework of reproductive justice (RJ). RJ offers a radical shift in understanding the breadth and depth of reproductive oppression. RJ was inspired by the movement of women of color feminists concerned with reproductive rights and protections beyond abortion—so, for example, the right to have children and not be forcibly sterilized and the right to raise children in healthy and secure environments without the threat of family separation or unsafe living arrangements. The history of the U.S. is filled with reproductive atrocities and oppressions leveled at black, brown, and indigenous women and families, which is so often left out of the conversation about reproductive rights, justice, and healthcare. This history is not past. It inflects policies and procedures of governmental control (consider here family separation tactics at the border). It inflects statistics related to high maternal and infant mortality rates for racialized individuals. It impacts economic and welfare policies related to family support, safety regulations regarding toxic environments (think here of lead pipes or industrial toxicities in black and brown neighborhoods).
Reproductive justice therefore requires broadscale infrastructural type justice. It involves healing, repair, and structural and economic supports. In my current and upcoming research, I am committed to bringing this history and present of reproductive oppression and the framework of RJ to bear on conversations regarding reparations in the U.S. There has been a resurgence of discourse on reparations over the past ten years, beginning with Ta-Nehisi Coates’ Atlantic article, “The Case for Reparations.” Several local reparations programs have been spearheaded throughout the country and the question of reparations was central to the 2020 democratic primary and presidential election. These conversations about reparations remain primarily tied to the wealth and labor extraction enacted during slavery, but as I argue in my work, reproductive labor and violence was central to the institution of slavery and because of this we need a renewed discussion of reparations as it relates to the harms of reproductive slavery.
Last year, I published the piece “Reproductive Justice as Reparative Justice,” and coming out this year will be a piece titled “Reparations for Reproductive Slavery and Its Afterlives.” I hope these pieces and future work brings to the public the idea that reparations for racial slavery in the U.S. need to be rethought with specific attention to the reproductive atrocities of slavery and its afterlife. Forms of intergenerational trauma related to the sexual and reproductive violences of slavery abound and we must use this knowledge to deepen our understanding of what “reproduction” entails—both socially and biologically— as well as available routes to racial repair. Reparations discourse must be reproductively-minded and vice versa. This approach challenges fundamental assumptions about both reparative justice (as primarily backward-looking) and reproductive justice (as primarily pertaining to the individual and biological).
What favorite thing(s) can you share with us that you do when not doing bioethics?
I enjoy spending time with my family and friends exploring new places. I love taking walks in areas new to me and finding great restaurants, bars, and coffee shops. I dig minimalist coffee shop vibes as well as outdoor eateries. Being a Wisconsin resident, I especially love a good beer garden.
Also, while I love cityscapes, I also worship the great lakes (shout out to Lake Michigan in particular). I love the expanse of Chicago’s and Milwaukee’s lakefronts and enjoy taking a peaceful walk next to crashing waves.
(Photo credit: Desiree Valentine)
What’s something published in the last few years that you’re excited about or found really helpful?
I’d love to hype the work of legal scholar Khiara M. Bridges who works on issues related to race, class, reproduction, and health/care. Her 2022 piece “The Dysgenic State: Environmental Injustice and Disability-Selective Abortion Bans” details how present-day operations of abortion bans and the state of reproductive healthcare for black women coalesce to generate a new or different type of eugenics that demands attention. Bridges identifies this as the dysgenic state. This is the state that “compels its citizens to give birth to children whose health has been impaired by environmental toxins from which the state has not protected them” (329).
Given the rollbacks on federal abortion protections for poor and disproportionately black and brown women starting with the Hyde Amendment and continuing through the Dobbs decision today and given various environmental harms—both physical and social—impacting racialized populations, it is imperative that we attend to the reproductive impacts on black and brown women and families levied by the state. We must situate this over the long duration from trans-Atlantic slavery and colonialism to today. And we must understand the intersectional contexts and sociopolitical depths of reproductive harm and the sociopolitical production of disablement.
As Bridges writes, we must understand the function of the dysgenic state as producing impairments “not in its citizenry generally, but in its nonwhite citizenry specifically” (298). The racial effects of the dysgenic state (a concentration of impairment in racialized communities) align with the motivations and effects of the eugenic state (the purging of impairment from and “purification” of white communities), thereby linking histories of state-supported racialized reproductive oppression across time and throughout its varying political, medical, and scientific measures.
Bridges’ ability to capture the particularity and increasing ubiquity of the dysgenic state is impressive and offers much to scholarly research at the site of disablement, racialization, and eugenics. I look forward to engaging more with her work and encourage others to do so as well!
Thanks Desiree for letting us get to know you and your work!
More beautiful Great Lakes images from Desiree below.
Get in touch to review some of the great titles coming out this year!
2024 is shaping up to be great book year and there were some great titles closing out 2023 as well.. The International Journal of Feminist Approaches to Bioethics always welcomes reviews of titles likely to be of interest to our audience.
Some that have caught our attention are:
The Bloomsbury Guide to Philosophy of Disability an edited collection by Shelley Tremain described as a ” revolutionary collection encompassing the most innovative and insurgent work in philosophy of disability.”
