Dialogues on Disability: Shelley Tremain Interviews Richard Moore

Hello, I’m Shelley Tremain and I’d like to welcome you to the forty-seventh installment of Dialogues on Disability, the series of interviews that I am conducting with disabled philosophers and post to BIOPOLITICAL PHILOSOPHY 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, racism, sexism, and other apparatuses of power; accessibility; and anti-oppressive pedagogy.

I acknowledge that the land on which I sit to conduct these interviews is the traditional territory of the Haudensaunee and Anishnaabeg, covered by the Upper Canada Treaties and directly adjacent to Haldiman Treaty territory. I offer these interviews with respect and in the spirit of reconciliation.

My guest today is Richard Moore. Richard is an assistant professor in the Department of Philosophy at the Humboldt-Universität zu Berlin and the Berlin School of Mind and Brain. His research aims to give an account of the mind by studying the ways in which it develops. To this end, Richard uses philosophical and empirical methods to study the development of communication and cognition in ontogeny and phylogeny. When not working, Richard tries to lead an uneventful life.

Welcome to Dialogues on Disability, Richard! Your childhood experiences, especially experiences that you shared with your twin brother, Gerald, who is also a philosopher, have led to your current work on linguistic communication. Please describe this work, explaining how your background and your childhood experiences influenced its direction.

I grew up in Sheffield, England. My childhood was unremarkable, and probably not untypical of academic philosophers, which is to say white, middle-class, and relatively privileged. While we didn’t have money, in the North of England in Thatcher’s 1980s, many people were much worse off.

My father was an academic historian—first at Sheffield, then later at Newcastle, and with visiting spells at Berkeley and Chicago. My mother, a former student of his, was a secondary school history teacher. The three children—I have an older sister as well as an identical twin brother—all did well at the local state school. We weren’t particularly well behaved. There was a strong family tendency to fail to show respect to authority figures. But, for the most part, we thought the people that we offended were worth offending. We weren’t always right.

My childhood experiences inspire much of the work that I do now and explain my motivation for pursuing it. I work on philosophical issues connected to communication, and especially the development of linguistic communication and the cognitive abilities that linguistic communication requires. Many of my earliest memories are with my brother. Around the age of three, we spoke our own language which contained many terms for concerns that were unique to our worldview, terms that had no translation in English and were not easily comprehensible to people who did not share our eccentric ways of thinking. I won’t elaborate on the details.

Apart from being evidence that we were strange children, that experience raises lots of questions: How does language reflect the projects and concerns of its users? How can three-year-olds develop the tools for communicating like this? And, if the cognition required for language is so simple that young children can do it, why are there no non-human language users?

I work on all of these questions now. The same questions occupied me throughout my undergraduate degree in Birmingham, where, with Greg McCulloch, I read Wittgenstein and Heidegger on the background of language; through my M.A. in Amsterdam, where I worked on the same issues with Martin Stokhof; and through my Ph.D. at Warwick, where I worked with Susan Hurley, Michael Luntley, and, following Susan’s death, Steve Butterfill on the cognitive foundations of intentional communication. 

Since completing my Ph.D., I’ve extended this line of research, by continuing to work on the nature of cognition that young children must recruit to use and understand words. I’ve written extensively on the nature of communicative intentions and on which creatures can use and understand such intentions. The idea that’s central to my work is that the ability to act with and attribute communicative intent is the foundation on which language can be built, at least once some capacity for syntax is added in. Therefore, if we can give an account of how children can attribute communicative intentions, we can make progress in understanding how they can acquire language and, ultimately, how this language-acquisition enables the acquisition of more sophisticated, language-based tools for thinking.

Post-Ph.D., I also had the opportunity to train as an experimental psychologist. So, in addition to my philosophical writing on communication, I’ve been involved in a series of empirical projects looking at whether, and in what conditions, not only children, but also great apes and domestic dogs, are able to recognize and interpret communicative intent. The goal of these studies is to understand what children are doing that other species do not do, and how this enables humans, but not other species, to learn to use words and sentences to think and communicate.

[Description of photo below: Pictured from the rear and left, Richard is face to face with Bimbo, an orangutan with whom he works, looking directly into Bimbo’s eyes and resting his open right hand on the glass between himself and Bimbo. Facing us, Bimbo, who is shy and prefers indirect eye contact, is returning Richard’s gaze with slightly averted eyes, his head resting against the place on the glass where Richard’s palm rests. Photo credit: Charlotte Broecker.]

I was first diagnosed with polycystic kidney disease (PKD) in the summer of 2009, while writing up my Ph.D. thesis. My brother, who, at the time, was a couple of years out of his Ph.D. and teaching in Paris, had recently been diagnosed with PKD. Since it’s genetic, my diagnosis soon followed. Aside from high blood pressure there were no symptoms, but it was a shock—especially since there was no family history. Somehow, we had picked up a de novo mutation.

I finished my Ph.D. under something of a cloud, but then moved to Leipzig to start a new job at the Max-Planck Institute for Evolutionary Anthropology in Leipzig, in Mike Tomasello’s Department of Developmental and Comparative Psychology. I was extremely happy there: I got to work on the questions that had always interested me, while retraining as an experimental psychologist and learning how to watch and understand great apes.

In 2013, I felt ready for a new challenge; so, I moved to a position at the Berlin School of Mind and Brain, a graduate school and research centre at the Humboldt-Universität zu Berlin. On my second day there—and, fortunately, with the benefit of a great new health insurance package—I went for one of my regular check-ups at the kidney clinic. My blood test came back positive for an antibody indicating granulomatosis with polyangitis (GPA)—an autoimmune disease that can cause haemorrhaging in the kidneys, heart, lungs, and brain.

So, now I had two potentially fatal illnesses, neither of which had ever presented any symptoms. My doctors started me on an intensive immuno-suppression regime. I don’t remember much about the next six months, presumably a side effect of the drugs that I took. However, I remember it being quite a happy time, in spite of the nihilism that came with expecting to die. Having a period during which no one expected anything of me was a nice change from the relentlessly high expectations of academic life.

In the summer of 2016, the GPA diagnosis was placed in question. For people with PKD, a false positive diagnosis can’t be ruled out since the only conclusive test requires a kidney biopsy, which PKD prevents. However, I never had any symptoms that could be traced definitively to GPA and the disease is rare enough to assume that I probably don’t have it, despite the lingering presence of the antibody in my blood. Nonetheless, the PKD caused my kidneys to deteriorate, and I was put on the transplant list in May 2018. Around the same time, I developed the first symptoms of end-stage renal disease.

My mornings are quite normal now, but around lunchtime I crash hard and experience fairly dramatic cognitive decline. I sleep most of the afternoon and spend my evenings in kind of a daze. I may need to start dialysis any day, which should only be temporary. My mother has offered me a kidney and is a match. If everything goes to plan a transplant will take place in early 2019 and I should be back on my feet in the spring.

I’m lucky to have a job where I mostly work from home and can explore my newfound passion for sleeping with minimal interruptions. At the same time, managing a career around serious illness can be challenging. Since coming to Berlin, illness has slowed me down in some ways; yet, it has helped me in other ways and has made me a better philosopher, too. 

Although you research in an area that is in demand, you encounter obstacles with the academic job market. How would you describe these obstacles and what would reduce or eliminate them for you?

First, I wouldn’t say that; or rather, the philosophy job market is difficult for everyone, and I don’t feel like I’ve had a particularly difficult time of things. On the contrary, since finishing my Ph.D., I’ve had two amazing jobs: First, I spent four wonderful years at the Max Planck Institute for Evolutionary Anthropology (MPI-EVA). Somehow, I was able to turn a Ph.D. in Philosophy into a career that involves hanging out with bonobos and orangutans. Since 2013, I have been having a fantastic time at the Berlin School of Mind and Brain. My colleagues have been incredibly supportive, the students are inspiring, and I live in a city that I really love. In the last couple of years, I was also able to spend two extended periods in the Philosophy Department at the Australian National University and at the ANU’s ARC Centre of Excellence for the Dynamics of Language. So, I’m extremely grateful for the career that I’ve had. I wouldn’t want to have done anything differently.

It’s true, however, that I don’t have a permanent job, and maybe that qualifies me as having encountered obstacles in the job market. Since my contract in Berlin expires in October 2019, I also expect to spend some time unemployed next year—given that I’ve been too ill to hit the job market with the force it would have needed to guarantee my future in academia. For the time being, I’m also more circumspect about where I apply for jobs; for obvious reasons, I’d prefer to be close to my family right now. Perhaps that means that I’ll soon walk away from academic philosophy, although I hope I won’t have to do so.

There may be some connection between my health situation and the progression of my career. I assume that’s what you’re asking about with this question; so, in what follows, I’ll speculate a bit about what that connection might be. I don’t think the connection is at all direct and certainly don’t think that illness is the only thing that has slowed my promotion down.

Although it’s hard to be certain, I think that I’d have done things quite differently had I not had periods of illness. For one thing, I’d likely have tried much harder to get a permanent job sooner. Since I’ve been so happy where I am, and since a permanent job didn’t always seem like something for which I’d have much use, I’ve certainly prioritized happiness over long-term security.

If my career has suffered at all, I suspect it is in subtle ways that relate to the philosophy job market, which is competitive enough that it doesn’t grant much slack to people who can’t always work at full capacity. In the past, for example, I’ve had two particular bits of feedback from job applications that connected somewhat with my health issues, although the people giving the feedback would not have known about my situation. First, I was told that my C.V. would be better if I had gotten money for large grant projects. Second, I was told that I’d be more competitive if I had a greater number of papers in more prestigious philosophy journals.

These factors, I think, are indirectly related to my health because of the ways in which illness moderates ambition. For example, a few weeks before my diagnosis with GPA, a major philosophy journal rejected a paper of mine that had been under review for about 1,000 days (and two sets of revisions). That was a miserable experience and, having been diagnosed with an illness with a five-year survival rate, not an experience that I was about to submit myself to again. So, for a couple of years, I didn’t submit my papers to journals with long review times, because it would take time that I didn’t think that I had. Although not doing so ruled out many leading journals, I was more concerned at the time with publishing my ideas quickly than where I published them. Since the alternative was that the work might not get published at all, I lowered my aspirations a little and my C.V. reflects that. Something comparable happened with grant applications. In the years after 2013, developing my own research group—and thereby taking responsibility for people other than myself—was the last thing on my mind. My ambitions during that time were much more modest. Again, my C.V. reflects that.

Perhaps these details don’t amount to much. In a near-by possible world in which I didn’t have these issues hanging over me, I might have been wasting my time on papers and grant applications that got rejected. Building a competitive C.V. is hard, even when life is normal. The health problems make things a little more challenging.

There are other illness-related regrets too. For example, I’ve had to turn down a couple of invitations to teach on a chimpanzee cognition summer school at the Chimfunshi Wildlife Orphanage in Zambia—because my doctor worried the location was too remote, too far from a hospital if something went wrong. Since returning from the ANU last May, I’ve stopped doing any work-related traveI. The prospect of dialysis makes everything too complicated. However, I expect to resume a normal routine post-transplant in the Spring, as well as hope to take up the Zambia invitation a year or two from now.

If that makes it sound like illness has held me back, I should clarify. It’s more complex than that. In many ways, I think that I owe my career to having received the GPA diagnosis when I did. I was a slow developer, academically. As a Ph.D. student, I was cocky and not very detail-oriented. Then, when I was at the MPI-EVA in Leipzig, I worked hard, but inefficiently, and largely without the sense of purpose that I needed to do well in an academic career.

That changed very quickly when I moved to Berlin. Suddenly, I had a sense of exactly what work I needed to do and how I needed to organize myself to do it. I became quite prolific. Being confronted with my own mortality gave me the drive that I needed to avoid becoming a fuck-up. It helped that I was teaching a lot during this period too. Presenting ideas to students helped me to develop the details of my arguments more effectively and was a great source of inspiration. With hindsight, the research-only environment at the MPI-EVA was probably not ideal for me at that stage of my career, since that very privileged environment gave me too much freedom to work without focus. The medical complications were a good antidote to that.

Even if illness has in some respects slowed my career development, I don’t think that it is the only factor or even the primary factor to have done so. For example, the fact that I don’t have a permanent job yet is likely due much more to the interdisciplinary nature of my work than with anything connected to my health. (For an excellent discussion of the challenges faced by interdisciplinary researchers in academia, see this illuminating recent blog post by Eric Schwitzgebel.) In sum, I don’t think there’s a very straightforward connection between my health and my current employment status.

Perhaps if (or when) I’m unemployed a year from now, the connection will feel more obvious to me. If so, maybe I’ll resent it. In the meantime, I’ll hope to benefit from the policy exercised by at least some British universities, whereby any suitably qualified disabled candidate applying for a job is guaranteed an interview for it. Given the challenges of the philosophy job market, policies like that could go a long way to level the playing field for philosophers who experience extra challenges in their careers. I’d certainly like to see policies of this kind implemented more widely. I should add, though, that the working of this scheme in British universities is not always transparent; and only a minority of universities seem to be signed up to it.

Richard, you have indicated to me that your circumstances have shifted your ideas about the sort of work on which you should spend time. How would you like to change your work? Move into a different field altogether? Start working in philosophy of disability?

Yes, to some extent, my experience of illness has changed the work that I think I should be doing. Communication and cognitive development research is still my first interest, and I have a number of exciting projects that I continue to work on in that domain. These include: a volume of Synthese that I’m co-editing with Celia Heyes and Rachael Brown whose theme is the Cultural Evolution of Human Social Cognition; a new project on the cultural evolution of hierarchically structured syntax; a series of papers on the invention of linguistic tools for thinking; and a number of empirical studies of primate and child communication. I hope to turn all of these projects into a book at some point.

I’ve also started to think that I would like to do something a bit more pro-social. Primate cognition research is fascinating; but making progress in the area is unlikely to improve anyone’s life dramatically. In recent months, I’ve been learning a lot about the transplantation process just through living it; it’s an area of life in which we could collectively do much better.

One of the things that I’ve learned is that there is huge variability in kidney transplant healthcare around the world, even in the countries that we think of as the most developed. For example, in the U.S., private companies provide dialysis in return for profit. As a result, dialysis providers discourage their clients from having the kidney transplants that will save their lives in order to keep them on dialysis for longer. (John Oliver gave an excellent account of this scheme in a March 2018 episode of HBO’s Last Week Tonight.) Moreover, in the U.S., people are routinely denied transplants because of their inability to pay for them. Kidney transplants, which are covered by Medicare, are an exception. However, the anti-rejection medications that need to be taken by kidney-transplant recipients are covered for only three years post-transplant, and the ability to pay is therefore factored into decisions about who is recommended for transplant operations.

The situation in Germany is better in some respects, but much worse in others. For example, while altruistic donation is technically permitted, here, in Germany that is, an ethics panel will typically refuse to approve donations between individuals who are unrelated or unmarried. Partly as a result of this, the transplant waiting-list for kidneys here in Germany is nearly eight years, in contrast to around two-and-a-half years in other Western nations. (Consider that it’s safe to remain on dialysis for only about three years; after that, organs start to suffer long-term damage.) The situation in the U.K. is better. Altruistic donation is encouraged in the U.K. and donor chains are organized to facilitate donation between strangers: If A is willing to donate to B but isn’t a match, and if C wants to donate to D but isn’t a match, a system exists that enables A to donate to D and C to B. So, there is a great deal of variation in different countries’ approaches to the organ shortage. Often, as in Germany, the shortage is due to the influence of the Church in healthcare politics.

The situation in the U.K. is quite good, but even there, many people remain on the transplant list, their lives on hold. The proposed switch to presumed consent in 2020 will remove about 700 people a year from the transplant list; but, several thousand people a year will remain waiting. In almost every country, furthermore, features of the transplant system remain deeply unpalatable. For example, black people typically spend twice as long on the transplant waiting-list as white people, where the rationale for this difference is a questionable set of assumptions about what makes donated kidneys a good match for a recipient.

Since the world has a surplus of kidneys—effectively, almost twice as many as it needs—the kidney shortage should not be an insurmountable problem, especially since kidney donation is not a major surgery. One doctor that I know compared kidney donation surgery to having one’s tonsils out. Only a very small proportion of kidney donors (about 1/300) go on to have kidney problems later in life. So, currently there’s a lot that could be done to make life better for people who need kidneys, as well as numerous ways that this could be achieved.

In case that list of facts didn’t already make it clear, I’m starting to think about writing a (hopefully short) book about the ethical issues that arise when considering an optimal approach for overcoming the kidney shortage. For example, should the sale of kidneys by donors be permitted? If so, how should it be regulated? And if not, are there morally permissible alternatives that encourage people to donate their organs?

Since I’ve been learning a lot about this subject recently, a popular science/philosophy book seems like a good convalescence project. I don’t have the energy to make much progress now; however, since my job contract is up in the autumn, there’s a chance that I’ll be un(der)employed from the end of 2019. If that happens, I could potentially use that time to write something thought-provoking. Ideally, it would be something that could be picked up and read in a day by someone who is considering donating an organ; a quick read that would give them a good understanding of the scientific, ethical, and healthcare issues that would help to inform their decision.

I mention this project now because, by stating it publicly, I hope to commit myself to doing it. I have lots of other projects that I’m excited to work on, however, so it may take a while to get to it. One good thing about an extended period of inactivity is that it leaves you full of new ideas. I hope that I’ll have the time to develop all of them.

Your co-workers have been very co-operative and supportive with respect to your accessibility requirements. I think readers and listeners of this interview would benefit from knowing what someone in your situation requires in terms of institutional and professional support. Please tell us what supports have been provided for you. 

In terms of institutional support, I could not have asked more from the Berlin School of Mind and Brain and my colleagues Michael Pauen, Annette Winkelmann, and Dirk Mende in particular. In the two extended periods of illness that I’ve had, one of which is ongoing, I reduced my workload to about 50% of my normal level. During this time, I was let off many work commitments and allowed to cancel or reschedule my teaching in whatever ways were needed to help me balance my workload. I haven’t yet taken any extended periods of sick leave, because I love my teaching and am well enough to keep doing it. When I have needed to make adjustments, however, anything I’ve needed has been arranged for me with a minimum of fuss. I feel extremely well taken care of and grateful to the colleagues who have taken up my slack without complaining, as well as to the students who have been understanding about my failure to mark their term papers.

We’re trying a new approach with my teaching this semester, after I had to postpone a three-day block course in July. At the moment, I can only concentrate for about two hours a day, so currently I’m co-teaching all my classes with graduate students. We’re lucky enough to have three exceptional graduate students passing through: Laura Schlingloff and Johannes Mahr, who have been on exchange from the Central European University, and Lialin Rotem-Stibbe, who is based at the Humboldt-Universität. If I get too tired or unwell to teach, they can go on without me. And if I my mind goes blank mid-class—which happens a lot now, especially when I get tired—it’s not really a big deal. So far, I’ve been delighted with this solution. I think that it’s a good experience for the graduate students. I’m also learning a lot from them and really enjoying the co-teaching too.

Given your situation and experiences, you have considered views on kidney transplants. Please share more of your thoughts on kidney transplantation with us.

Recently I had a sobering 3-a.m. conversation with a Berlin taxi driver—a symptom of end-stage renal disease is broken sleep, so at times I’ve become quite nocturnal. He asked me what my life goals are, so I told him about my situation now. He replied that he thought organ transplants should be forbidden. My German wasn’t good enough to follow his argument exactly, but it seemed to be something about upsetting the natural order. He looked a bit disconsolate when I told him that I was thirty-eight and would die without a transplant, but he shrugged his shoulders as if to say, “Life is tough! What can you do?”.

His response was strange, not to mention surreal, because kidney donation is not dangerous. It typically has few negative consequences for a donor’s quality of life. In the unlikely event that a donor’s kidneys do fail later, they are usually moved straight to the front of the transplant queue, by way of compensation for their altruism. And it’s well documented that organ donors typically experience long-lasting increases in their self-esteem and sense of well-being. While kidney failure is a curable disease, half of all people who need a kidney still die while waiting for one. This speaks to a problem in the supply chain—but it should be a fixable one.

Fifteen years from now, artificial organs will exist. So, I’m certain that I’m in the last generation of people who will ever need a kidney transplant. My brother will need one in a year or so, and perhaps we’ll both need a second in ten or fifteen years. (Transplanted organs don’t last forever.) By the time that my nephew needs a kidney, bionic organs will likely be ordinary, and he may even get to avoid the lifetime diet of anti-rejection meds that organ replacement currently entails. In the meantime, there is an organ shortage crisis. It won’t last forever, but lots of people will die needlessly.

I’m not going to tell anyone to go out and donate a kidney, because that’s a big commitment. But I think that people should inform themselves about the minimal costs to themselves of doing so and, at the very least, everyone should carry a donor card. If you’re killed in a motorbike accident, you won’t have much use for your organs; but they could save the lives of five or six other people.

Richard, would you like to say anything more about something that we’ve discussed in this interview or recommend certain books, articles, videos, or music on any of these topics?

If people are interested in reading up on this subject, one good philosophical book that I’ve read and enjoyed is Andrew Michael Flescher’s The Organ Shortage Crisis in America. The author argues that we can make rapid progress in ending this crisis without resorting to legalizing the sale of organs, just by encouraging a sense of civic duty in potential donors and appealing to humankind’s intrinsically cooperative nature. I’ve also read some very good essays on organ donation; for example, Larissa MacFarquhar’s “The Kindest Cut” in the New Yorker, and Tiffanie Wen’s “Why Don’t More People Want to Donate Their Organs?” in The Atlantic. As I mentioned previously in this interview, the Dialysis episode of HBO’s Last Week Tonight with John Oliver was also very good, although depressing. 

With respect to my communication research, this year I read two books that I’d recommend without hesitation. Ruth Millikan’s Beyond Concepts is an attempt to show how an account of language-use and understanding can be given without reference to any foundation in communicative intentions. I think that the project is unmotivated—there’s simply no need to give up this foundation—but it’s an original and provocative book that is, in many ways, groundbreaking. It pushed me to re-evaluate many of the assumptions central to my own work. Similarly, Ljiljana Progovac’s book Evolutionary Syntax makes huge progress in showing how syntactic phenomena can be made tractable for explanation in terms of processes of natural selection for more expressively powerful communication. Both of these books made me want to stop what I was doing and start writing on them.

Thank you, Richard, for these recommendations and for this very informative interview. I was especially interested to learn more about the process of kidney transplantation in various geopolitical contexts because some of my family members, here in Canada, are involved in kidney transplant donor chains.

UPDATE: This interview with Richard Moore was conducted in late December 2018/early January 2019 and was initially scheduled to be posted to BIOPOLITICAL PHILOSOPHY on January 20th, 2019. Due to unforeseen circumstances, I made adjustments to the Dialogues on Disability schedule of interviews, postponing the date on which Richard’s interview would be posted to the blog. On January 23rd, 2019, Richard underwent a kidney transplant and is doing very well.   

Readers/listeners are invited to use the Comments section below to respond to Richard Moore’s remarks, ask questions, and so on. Comments will be moderated. As always, although signed comments are preferred, anonymous comments may be permitted.

_________________________________________

Please join me here again on Wednesday, March 20th, at 8 a.m. EST, for the forty-eighth 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. 

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