Hello, I’m Shelley Tremain and I’d like to welcome you to the twenty-eighth installment of Dialogues on Disability, the series of interviews that I am conducting with disabled philosophers and post here on the third Wednesday of each month. The series is designed to provide a public venue for discussion with disabled philosophers about a range of topics, including their philosophical work on disability; the place of philosophy of disability vis-à-vis the discipline and profession; their experiences of institutional discrimination and personal prejudice in philosophy, in particular, and in academia, more generally; resistance to ableism; accessibility; and anti-oppressive pedagogy.
My guest today is Melinda Hall. Melinda is an assistant professor of philosophy at Stetson University whose research interests include philosophy of disability, bioethics, and Continental philosophy. Melinda loves to read (and sometimes write) fiction and poetry, play tennis, and binge “prestige” television (but feel guilty about it later). Since last year, she has taught philosophy classes on various topics—including philosophy of disability—for incarcerated men at Tomoka Correctional Institution in Daytona Beach.
Welcome to Dialogues on Disability, Melinda! Your background is unusual because you were homeschooled for several years and then transitioned to a public school. Please describe your childhood and upbringing.
I was raised in an evangelical Christian household in rural Ohio and was homeschooled until the fourth grade for religious reasons. I recall that after I transitioned to public school, I asked to be excused from science lessons on evolution and was completely bewildered that my teacher was upset with the request. Church and religion dominated my childhood, but I did not then realize how different my life looked from the lives of those outside my particular enclave.
Because my dad is a pastor, I, along with my three siblings, was under a great deal of oppressive scrutiny within the church. My personality and behaviors were continually monitored both within and outside the family. Because of this, I had little privacy and felt that my parents valued the opinions of other people, or perhaps even their wants and needs, more than my fundamental needs or development. I desired recognition from my father as an authority figure and struggled mightily with the fact that I continually failed to meet his (often shifting) expectations. In that way, at least, my story is not an unusual one. But, atypically, since I was educated at home and my dad was an authority figure at the primary institution where I was socialized, I did not have a competing authority structure or system to provide insights about alternatives and opportunities for change.
I remember that I was obsessed with proper etiquette and bodily comportment—I thought all the time about making myself as unobtrusive as possible—and with abstract concepts like purity and goodness, a preoccupation that I now understand was racially-inflected, among other things. This was true even while I subverted rules and tested limits. I think that I wanted to prove that I was lovable even if I was “immoral;” but, I was, at the same time, also hyper-aware of rules and believed that one’s value came directly from rule-following. Long before I became a teenager, being appropriately feminine and growing into what the church understood as Christian womanhood was a major, daily issue that I had to confront, plan for, and control. I received the strong message that I needed to hold myself accountable to those norms or risk a variety of punishments, both immediately and in the future.
As a teenager, I often worked to "serve" the church in different capacities and wanted very badly to fight against injustice. The way that I understand injustice and how to fight it has radically changed from that time period, but in this way at least I have a continuous interest from my childhood. Teaching, as an adult, in a volunteer capacity at the Tomoka Correctional Institution is a way—among dedicated colleagues—to intervene against cruelty and build community ties in a fundamentally hostile space. Teaching work on disability there has been very important to me, revealing to me in an immediate way just how many disabled people are imprisoned, how many imprisoned people are disabled. I would estimate that, of the 20 men in the classes that I teach, 80 percent identify as, in some way, disabled.
[Description of image below: Close-up coloured photo of Melinda, a white woman with long brown hair, who is standing in front of a red brick wall. She is wearing a v-necked, black-and-white patterned top and smiling widely. The photo seems to be a selfie.]
Please explain how you tie the transition you made to public education with the social constitution of disability.
I had immense difficulty with the transition to public school. I felt that I was sent to school as punishment for transgressions. Major problems included the fact that I did not know what the rules were in my new context and could not understand (until after many weeks) the structure of practices such as homework and the format of daily schedules. It did not help that in Ohio there was standardized testing in fourth grade, when I entered; I came in after the beginning of the year and was required to immediately make up hours of missed testing alone in a room with a testing monitor. I made myself literally ill worrying over an additional standardized test, which I took later in the year with the rest of my class. I could not eat or sleep after hearing comments that my teacher made about the importance of the testing. I remember that I repeatedly got up during the test to sharpen my pencil and was afraid to leave the room to go to the bathroom.
In general, I recall my hands trembling and experiencing breathlessness throughout the school day. I believe these physical symptoms lasted for at least several months—I remember wondering if I would always tremble while at school and trying to figure out how to compensate so that no one would notice. Escaping notice became an obsession; I stood out in so many ways and wanted desperately to erase the differences between myself and the other students.
When I was asked questions about myself, I had a difficult time telling the truth and fabricated stories to meet expectations. But this simply made it harder to talk to my peers, as I was dealing with multiple overlapping fears that I would be “found out.” I never wanted to undermine anyone’s positive views of me, so I preferred my friendships to be sporadic and static, making flash connections and then moving on, rather than continually interacting with anyone in particular and—inevitably, so I thought—disappointing them. These relationship trends have lasted into adulthood.
It is hard, as an adult, to thoughtfully evaluate these experiences because I was very confused at the time. Often, I did everything that I could to avoid my intense discomfort, even dangerous things like hiding outside the building before school and purposely missing the bus after school because I was too anxious to find someone to sit beside. Because of these behaviors and my many absences, I was flagged for interventions and received some counseling.
My situation highlights the ways that institutions both create and then pathologize disability—in this case, social anxiety. Schools, as neoliberal institutions, reward outspoken and highly social children and young adults, and expectations of continual, intense interpersonal interactions and performances create binds. The early mornings, long days, and large class sizes contribute to this. These features are especially hard on those from minority and marginalized backgrounds and non-traditional students.
When students fail to be responsive to the demands of these settings or develop negative responses to them, they become subject to medical taxonomies of various kinds and are carefully observed. This is one way that disability is constructed: through the demands of institutions and the censure of individual responses by those same institutions. Of course, even referring to my experiences and situation as “social anxiety” is already deeply informed by this particular historical moment, including a variety of material conditions, labor practices, and ways of talking about psychology and medicine.
What, in your view, are the most unacknowledged, persistent, and significant barriers to institutions of higher education for students and faculty who are constituted in this way?
There is a strong expectation in contemporary academia for an entrepreneurship of the self; this kind of entrepreneurship and academic careerism depends upon many of the same traits and skills that are required in many other neoliberal institutions, including the traits and skills that make one “confident, bold, and striving,” as Hickinbottom-Brawn puts it. Although the rewards and benefits of one’s labor and efforts belong to an institution or are expected to be funneled back to institutions in various ways, the risks of one’s academic entrepreneurship belong to the individual and the individual alone.
This is true, of course, for faculty, but I see these dynamics impacting students and their activities, too—especially in connection with activism and social justice work. Institutions ally themselves with these efforts only when it is regarded as beneficial to do so—usually without investing in the work itself, leaving these investments to the striving individual. Importantly, faculty must sell, support, grease the wheels, and fill the gaps of academic institutions; this includes providing all kinds of informal, unpaid social services (like counseling and mentorship) to students who are, meanwhile, underserved or pressurized by these same institutions. In other words, academic institutions produce fundamental and extensive needs in students who then turn to faculty to relieve the pressure. Yet, faculty are also undermined by institutions. To be clear, these conditions impact everyone in academic communities, but I claim that they present special difficulties for those who experience anxiety.
To use some specific examples, the need to be in continual, immediate contact with colleagues and students is very difficult for me. I take sincere pleasure, and sometimes even energy, from these relationships, but the demands of interpersonal interactions come at great personal cost and keep me on an anxiety rollercoaster—my days often include many hours of meetings, often one-on-one and involving very difficult content. Constant email contact is also difficult for me to maintain. This is fundamentally misunderstood by many of my colleagues and students as forgetfulness or disorganization, or even a personal slight.
I know that it is confusing that someone with anxiety can be a successful teacher and speak each day in front of large groups. So, misunderstandings about anxiety abound and are difficult to combat. Further, as a young woman in academia, there are great risks to publicly admitting that I experience anxiety; it sometimes feels impossible to claim anxiety and describe its effects on me without increasing these effects or adding new obstacles. Compounding this predicament is the issue that many in academia are cynical about anxiety and disability more generally. They feel that disability accommodations are off the rails and student needs are completely overblown and should be cut down to size. I work all the time to talk through and combat this ableism and believe that it stems in part from a fundamental inability to think institutionally rather than individually.
For instance, turning back to the material conditions of faculty, the precarity of the academic career—which includes everything from adjunct positions paid out at the poverty line, to tenure and promotion, to intricate publishing procedures that advantage those with time, money, and other resources—contributes to continual crises among academics. When one wonders about or engages in hand-wringing or dismissal with regard to rates of anxiety and related experiences of depression and other issues among academics, but does not consider the fundamental insufficiencies and risk related to the lifestyle and typical wages of academics, the role of both social construction and the academic institution in the production of what is called disability are overlooked.
Finally, I want to reiterate the fallout of institutional indifference to the everyday needs of students, faculty, and staff—from essentials like food, rest, and sleep, to seeing on the syllabus thinkers who look like you and sound like you. While universities trumpet 24/7 services for students, they remain difficult places to live and work and leave it to community members to meet needs that often the institution creates in the first place. This is, of course, done haphazardly and ad-hoc with the resources community members have available and leaves all of us needing and desiring more.
Melinda, your fabulous new book, The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics, was recently showcased in a series of posts—that is, a symposium—on this blog. For readers and listeners who missed that series of posts, please tell us what motivated you to write the book and what you take to be its most salient arguments.
Thank you for hosting a symposium on my book on this blog! My motivations reach back to college. Then, I started studying philosophy right away, because even though I intended to do political science and eventually run for office—working on issues like education and economics—I noticed that it was in philosophy classes that questions that I cared about were asked. I didn't want to count up Congressional votes. I wanted to think about power and how it works. I discovered Foucault and started reading (or trying to read) him. I became interested in ethics like it was a second skin. When people asked me about my interest, it seemed so obviously intriguing that I had a hard time answering. I took every elective and course offered on the topic and started to read bioethics.
I noticed immediately that bioethics was absolutely derisive about disabled people, disability rights, and well-being among disabled people. I couldn't believe the lies and distortions about disabled people and their capabilities, as they were demonstrably false and offensive. Because of problems with my eyesight—I was told that I had a degenerative condition which caused a precipitous and consistent weakening of my eyesight; these symptoms remain, but I can wear contacts...for now—and because of my anxiety, I saw myself as vulnerable to these discourses.
Now, since in my work I question the boundaries of disability and ability, and recognize the social and political constitution of these labels, these matters have shifted. It is clear to me that bioethics as a discourse is a place where disability is framed and produced—reality following and framed by language and concepts. I work on bioethics and Foucault, still, and feel like I have never stopped thinking about either one of these areas of study or about disability since I encountered them.
In graduate school, I became interested in transhumanist literature as a primary example of the foibles and disturbing power over public opinion on disability that I observed in bioethics literature more generally. In this way, I became interested in writing my book, to combat this discourse. The Bioethics of Enhancement primarily focuses on transhumanists, the human enhancement enthusiasts whom I critique. But, I claim that transhumanist arguments are continuous with, not aberrations of, arguments elsewhere in bioethics; and so, they can highlight the biopolitical assumptions at the heart of it—that is, that disability is connected to risk is connected to death.
In the early chapters of the book, I engage in a Foucauldian analysis of the last century of enhancement enthusiasm and more moderate bioethics literature in order to support these arguments. One can also find my slightly differently-pitched critique of transhumanism on the same issues in an article that I published in a special issue of Disability Studies Quarterly; there, I engage the under-utilized Foucauldian concept of vile sovereignty to demonstrate the problems with transhumanism.
The central claim of the book is that transhumanism and bioethics are twinned and that both are biopolitical. The biopolitical logic of bioethics situates disability as risk that must be managed. This treatment of disability creates and directs risk rather than identify and mitigate it. In this way, I claim, bioethics as biopolitics produces risk and distributes it (unevenly) in the name of risk management. This, in turn, impacts how disability is viewed and stigmatizes disabled people.
Shelley, in your work you have connected bioethics tightly with politics and situated the discourse as a “predictable product and tangible outcome of” the movement of power in society, specifically in the mode of what Foucault articulates as biopower, or biopolitics. Following these insights, on my view, bioethics is an academic and professional field in which experts are asked to establish protocols for and critically react to the role of medicine in everyday life, evolving technologies which mediate bodies and environments, as well as relationships between medical professionals and patients. Bioethics is, then, a network of relations in which power differentially operates. Echoing you, Shelley, then, I argue that bioethics is a medium of biopolitics insofar as it is a political organ, a normative discourse, and a gatekeeper.
In bioethics discourse, the responsible medical subject is the normal subject who chooses against risk. This normal subject is set up against the risky embodiment of others; these others are viewed as subject to chance and seen as threats to the entire community. The responsible medical subject becomes the responsible citizen who chooses to manage that chance. For example, when we decide to reproduce, we are urged to meet with genetic counselors and discuss the predicted future attributes and quality of life of our fetuses so that we can make decisions regarding how, when, and who to reproduce. These processes are posed as risk assessment and parents are urged to be risk managers even prior to the initiation of pregnancy.
In bioethics literature—for example, the work of Julian Savulescu—parents are urged to create the best child possible, which most often means choosing not to produce particular children whose embodiment is thought to pose risk and vulnerability. For Savulescu, this is a human enhancement strategy, although no one in particular is enhanced. Savulescu, writing with Persson, urges the practice of human enhancement to avoid catastrophic effects such as species extinction. Savulescu’s contentions are the central case study in my book. I also closely consider the transhumanist arguments of philosopher Nick Bostrom.
Prenatal testing and genetic selection are the technologies of choice for creating the best child. Given this, I also analyze the related matter of genetic counseling as a brief case study. The practice of genetic counseling presents genetic information and makes this information operational in decision-making—that is, a part of responsible parenting. Genetic counseling is a key part of the medical and cultural context of genetic selection. Exploring the play of choice in this arena will allow us to uncover the construction of both the disabled body as a site of risk and the unmarked or abled body as a site of choice.
I hope that my book highlights the ableism in bioethics literature and the general inability of bioethicists to imagine a life well-lived with disability, even while attempting to engage in fantastic imaginings of sci-fi futures. I also hope that readers and listeners of this interview will consider reading or listening to the symposium on the book to discover more. Thank you, Shelley, for hosting that symposium and for organizing the panels behind it.
In your contribution to the symposium, Melinda, you indicated that your next project would involve research on risk and the Zika virus. Please tell us about this research project and how the position that you aim to articulate can be distinguished from the argument advanced in a recent article on the subject that appeared in AEON.
I received a grant from my institution to visit the Centers for Disease Control to better understand risk communication strategies in cases of viral illness such as Ebola and Zika. Risk communication, on my view, can put persons at significant risk. This is what I want to investigate, especially in connection with race and disability.
With regard to Ebola, I contend that an unintended consequence of public health discourse surrounding risk prevention in the case of Ebola virus disease is the deepening construction of African persons as inherently risky or vulnerable. Meanwhile, those in the West conceive of themselves as risk managers of these populations, rather than as vulnerable themselves. Indeed, researchers have found that stigma plays a role in misunderstandings with respect to the transmission and prevention of Ebola. Furthermore, I find that in public discourse surrounding the question of Ebola race acts as a key floating signifier referring to risky persons, risky traits, and the idea of risk.
Travel bans applying to affected countries, including Liberia, Guinea, and Sierra Leone, were widely called for by public figures and in social media in the United States. Panic over the threat of Ebola—partially expressed as panic over the presence, or potential presence, of West African persons and those resembling West Africans—vastly outstripped its potential impacts, especially when compared to far more widespread and also deadly viruses such as seasonal influenza. According to the CDC, the Ebola outbreak’s impact in the U.S. was limited to only two imported and two locally-acquired cases. Meanwhile, the CDC estimates that 5-20% of the U.S. population are impacted by the seasonal flu each year and there are roughly 200,000 resulting hospitalizations. In other words, travel bans were not necessary. There was some panic, too, over the transmission of Ebola via the sperm of affected men—a second kind of boundary-setting.
The stigma around Ebola continues to have a variety of effects, exposing particular individuals to risk. Just this week, The Washington Post reported on the apparently unnecessary death of a famed aid worker, stating: “Among the medical workers featured on Time’s cover was a Liberian nurse, Salome Karwah, who lost her parents to Ebola, beat the sickness herself and went on to provide care to scores of others.” Karwah died on February 17th, just a few days after giving birth via Caesarean; she had seizures and other symptoms that caused medical staff who knew that she was an Ebola survivor to fear providing her care. In other words, she seems to have died due to that lack of care.
With regard to Zika, there is some evidence that the virus can be transmitted via sex between partners or from mother to child via the placenta, and there is evidence that Zika is linked to both microcephaly and Guillain-Barré syndrome. Even before this evidence was available, however, women in El Salvador were asked by governmental authorities to refrain from having children until 2018 for fear of microcephaly. This recommendation comes amid similar discourse in Central and Latin America, and even in the state of Florida, where I live. Yet, of several thousand cases of microcephaly in Brazil, only four cases involve infants who carry the virus in their tissue. Further, microcephaly is an under-defined condition that can have a range of effects. My concerns here are that the women who are asked to wait to reproduce are often the same women for whom contraception or abortion are near impossibilities, and that the caution to refrain from reproducing is justified by the suggestion of risk, that is, reproduction could result in a disabled infant. Men are not simultaneously asked to refrain from sex. Sexism and ableism are thus intertwined in this case.
The Aeon article you mention relates to Parfit’s non-identity problem, which is primarily about harm. Parfit was concerned with the idea that most accounts of harm are person-affecting, but that these cannot bear on cases like the infamous rubella problem. This problem is meant to suggest that there are other kinds of harm than person-affecting harm. In this case, it is assumed that a woman would certainly have a disabled infant if she went through with a pregnancy during a time period in which she contracted rubella. Since otherwise this particular person would not exist, how could she be said to harm the potential child by bearing them? Parfit suggests that bringing people into the world who are “worse off” than other persons who could come into the world is another kind of harm—this time, impersonal.
In the Aeon article, authors Dominic Wilkinson and Keyur Doolabh triangulate with Parfit’s discussion of two different kinds of harms, person-affecting and impersonal harms, to put forward the view that, in the case of Zika, we can balance avoiding both kinds of harm by investing in mosquito control and birth control. Along the way, they assume that disability is an obvious harm and further seem to assume that the risk of having a disabled infant simply is the risk that Zika presents.
I would object to both these assumptions as my primary departure from Wilkinson and Doolabh’s discussion. But, I would also add another issue that Wilkinson and Doolabh do not consider. They do not see much relevant difference between mosquito control and birth control, especially insofar as both involve the same two kinds of harms—person-affecting and impersonal. But, I see a relevant difference: the placement and burden of the risk management. With mosquito control, risk management is collective and the costs are shared by groups. With birth control, risk management is individual and the costs are more burdensome depending on one’s social placement and resources. I object to discourses in which it is claimed that individual persons must work to prevent the existence of disabled people, because this both naturalizes and depoliticizes disability and covers over these erasures by creating a kind of false voluntarism about disability.
A very perspicuous analysis. What books, articles, or other resources would you like to recommend to our readers and listeners on the topics that you’ve discussed in this interview?
For readers and listeners who want to know more about social anxiety, I would recommend: Sarah Hickinbottom-Brawn, “Brand ‘you’: The Emergence of Social Anxiety Disorder in the Age of Enterprise” in Theory and Psychology 23 (6): 732-751.
For readers and listeners who want to know more about my views on bioethics, enhancement, and risk in particular, I would recommend my 2013 article, “Vile Sovereigns in Bioethical Debate,” which appeared in Disability Studies Quarterly 33 (4) and is available online, as well as my book, The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics.
For many of the background assumptions of my approach, I would recommend your 2008 article, “The Biopolitics of Bioethics and Disability,” which appeared in Bioethical Inquiry 5.
The positions that I argue against can be found in Ingmar Persson and Julian Savulescu’s book, Unfit for the Future: The Need for Moral Enhancement and Savulescu’s article, “Procreative Beneficence: Why We Should Select the Best Children,” which appeared in Bioethics 15 (5-6).
Thank you so much, Shelley, for inviting me to participate in your outstanding interview series. I am so humbled to be a part of it. So many in our profession have already benefitted from, and will later benefit from, the many interviews that you have done. I and many, many others appreciate your painstaking and fabulous work!
Melinda, thank you very much for these references and for your work to articulate another narrative about disability in philosophy. Your insights are extremely valuable to many of us.
Readers/listeners are invited to use the Comments section below to respond to Melinda Hall’s remarks, ask questions, and so on. Comments will be moderated. As always, although signed comments are encouraged and preferred, anonymous comments may be permitted.
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Please join me here again on Wednesday, August 16th at 8 a.m. EST, for the twenty-ninth installment of the Dialogues on Disability series and, indeed, on every third Wednesday of the months ahead. I have a fabulous line-up of interviews planned. If you would like to nominate someone to be interviewed (self-nominations are welcomed), please feel free to write me at s.tremain@yahoo.ca. I prioritize diversity with respect to disability, class, race, gender, institutional status, nationality, culture, age, and sexuality in my selection of interviewees and my scheduling of interviews.
Melinda,
thanks again for a fascinating interview! For some reason, Typepad wouldn't allow Comments on this post (or others on the blog). However, the problem has been corrected.
Shelley
Posted by: Shelley | 07/20/2017 at 09:47 AM