Introduction: Sketching the Contours of a Relational Research Ethics

I begin this article with what may initially seem like a curious assertion: in exploring the process of relating to and caring for a loved one with dementia, we have in hand a potential model for theorizing relational research ethics. Let me provide some context for it. Some 12 years ago, I learned that my mother had been stricken with dementia. The tentative diagnosis was Alzheimer’s disease, but because confirmation of the disease could only issue from a post mortem examination, those of us who spoke to her situation in the years that followed would generally refer to the more nonspecific “dementia.” The diagnosis hit us hard: here was a vibrant, smart, attractive woman in the process of becoming terribly diminished and suffering mightily on account of it. Here, also, however, was a most unusual opportunity. As a longtime student of memory and personal identity, I would sometimes adopt the role of “researcher”—of a sort—and try as best I could to tell her story. I will provide some details about this story in the pages to follow. For the time being, I simply note that this particular research endeavor, such as it was, taught me more about relational research ethics than any other research endeavor in which I had been involved. Indeed, and again, I ultimately came to think of the relationship my mother and I established over the years as being a model not only for the research relationship but for human relationships more generally. Please understand: I am not elevating myself as a model! On the contrary, there were numerous times, in the early years especially, when I was anything but that. But that did change, and through this change, I came to learn a great deal about the kind of relationality a relational research ethics requires.

Some aspects of this mode of ethics may be traced to my own and others’ work in narrative psychology, which, broadly speaking, seeks to explore persons—more specifically, the stories of persons’ lives—rather than those “variables” that are at the heart of so much traditional psychological research and to do so through the kind of relationality that emerges in the context of in-depth interviews and the like (Freeman 1993, 1997a; Josselson 2006; Schiff 2018). However, my main philosophical inspiration for much of my thinking about research ethics is the work of Martin Buber and, especially, Emmanuel Levinas, the latter of whose reflections on what I would come to call “the priority of the Other” (Freeman 2014a) have provided a broad ethical framework for carrying out my responsibilities as both scholar and, more important, son. Before turning to my mother’s story—which is, in part, my own as well owing to the very relationality at hand—it may be useful, first, to share some additional words regarding my own turn to a relational perspective on inquiry, and then, a brief sketch of Buber’s and Levinas’s ideas as they pertain to relational research ethics.

Adopting a Relational Perspective on Inquiry

Like most scholars in the social sciences, much of the research I pursued, especially early in my career, assumed the traditional form of developing an interest, formulating hypotheses or conjectures about what I might find through my efforts, carrying out the required work, and, ultimately, writing it up in some meaningful way. Even then, I found myself attracted to a relational view of research. In the context of a large research project I worked on back in the early 1980s, my advisors had been hopeful that I would be able to shed some of my humanistic impulses (and distaste for what I perceived to be the objectifying crudeness of much empirical research, especially in psychology) and carry out the somewhat more dispassionate, quantitatively oriented work they had been reared to value. However, the beautifully designed questionnaire that was to be distributed to our research participants during the first wave of the research left me cold and mystified, as in: “We’re not even talking with them! How are we supposed to understand who they are and what they’re saying?” The answer, basically: the correlation matrices will tell us. Fortunately, the second wave of the project involved extensive life history interviews that would take me and others to lots of interesting places and gave me some measure of entry into a more relational perspective. I still came in armed with questions (one person working on the project needed me to ask question x for her dissertation, another needed me to ask question y, and so on), but I was able to ask them in a relatively unstructured and open way in the context of an extended dialogue. I cannot say I was entirely comfortable even with this more open format. Partly because our research participants were aspiring artists, many of whom did not much care for being interrogated about their art and creative process, and partly because I found the entire endeavor intrusive and objectifying (gentle though my research “touch” tried to be), I eventually came to feel that I was not quite cut out for empirical research of this sort.

On a more positive note, I grew to love the more theoretical and philosophical side of inquiry, and, under the guidance of some stellar mentors, especially the philosopher Paul Ricoeur, began to carry out work in narrative psychology that would focus on the interpretation of texts (e.g., Freeman, 1993, 1997b). Much of this work was purely theoretical in focus, drawing on interpretation theory and narrative theory as a vehicle for exploring lives and life histories, but some was also directed to specific literary texts, memoirs and autobiographies especially, that could provide the kind of “data” I was most interested in exploring. I suppose one could say that this latter work was empirical in nature, focused as it was on particular lives, but certainly not in the way most social science conceived it. (Not surprisingly, some of my colleagues in my home department began to wonder why I still called myself a psychologist (see Freeman 2014b)).

Formative though this more literary approach to inquiry was, it certainly was not “relational” in nature, at least not in the way that the term is generally used in the context of research. The good news is that this work allowed me, and still allows me, to make contact with important real-life human issues without feeling some of the unease I had felt when carrying out more traditional empirical research. At the same time, I eventually found myself inclined to make more contact with real real-life human issues as they emerged in the context of both the life I was leading and the lives of those around me. So it is that I did a piece on a friend and colleague who was facing some severe challenges in his family’s well-being (Freeman 1999), one on the death of my father and its aftermath (Freeman 2002a), another that explored a life-changing experience of my own during a visit to Berlin (Freeman 2002b), and a more summative one that proclaimed (and was titled) “Data are everywhere” the subtitle of which was “Narrative criticism in the literature of experience” (Freeman 2003). It was in this piece that I sought to bring to bear the approach I had adopted in relation to literary texts to the lives of real people, including my own. I have come to identify this mode of inquiry as “narrative hermeneutics” (Freeman 2015a), and its most fundamental philosophical and methodological commitment is to practice fidelity—phenomenological and ethical—to these lives and the stories that issue from them.

During this phase of my work, I was certainly gesturing in the direction of a more explicitly relational approach to inquiry, but had not quite arrived. In the case of my colleague and friend, I had mainly observed what was going on in his life and, with his permission, wrote about it. For the piece on my father, it was relational insofar as it drew on our lives prior to his death, but given that the piece in question was written some 25 years later, I hesitate to call it relational in the living sense that most relational research posits. As for the life-changing experience I wrote about, it was largely a “private” one that explored the depths of my own interior; and while other people were part of the story I would eventually tell, they really did not figure prominently.

It was not until the onset of my mother’s dementia that I began to move more squarely in the direction of relational research. I did not intend to do so. I approached my mother as a son, not a researcher. This was so until her death some 12 years later. But as a student of narrative psychology, particularly interested in exploring issues of memory and identity in the context of people’s actual lives, I was not one to ignore what I was seeing before me. Indeed, painful though aspects of those years were, I confess to having been fascinated, at times, too. I was learning things about memory and identity, in her life, in mine, and in our relationship that I could never have learned otherwise. We also felt things we would never have felt. There were times, in fact, when it seemed as if entirely new regions of being had been opened up, owing to the very intimacy of our evolving relationship. I know some people were taken aback by my decision to write about all of this, but for me, it did not feel like a decision at all. I had to do it. And by doing it, I came to learn a good deal more about what relational research ethics might entail. Also instrumental to this learning process was encountering the work of Buber and Levinas, to which we now turn.

Martin Buber: Relationality, Respect, Reciprocity

According to Buber (1970), there are two basic modes of encountering the world, both human and non-human. One is the “I-It” mode and is found whenever and wherever we take an objectifying stance to the reality before us. In encountering a tree, for instance, “I can accept it as a picture, … I can assign it to a species and observe it as an instance, with an eye to its construction and way of life, … I can dissolve it into a number, into a pure relation between numbers, and externalize it. Throughout all of this,” Buber explains, “the tree remains my object and has its place and its time span, its kind an condition” (pp. 57–58). This is the I-It mode.

But it can also happen, if will and grace are joined, that as I contemplate the tree I am drawn into a relation, and the tree ceases to be an It. The power of exclusiveness has seized me.

This does not require me to forego any of the modes of contemplation. There is nothing that I must not see, and there is no knowledge that I must forget. Rather is everything, picture and movement, species and instance, law and number included and inseparably fused.

Whatever belongs to the tree is included: its form and its mechanics, its colors and its chemistry, its conversation with the elements and its conversation with the stars—all this in its entirety. (p. 58)

This is the I-You mode, also sometimes framed as the I-Thou mode, and it is based fundamentally on relation.

Much the same state of affairs emerges in encountering people—including those who may be the “objects” of our research. As Buber explains,

When I confront a human being as my You and speak the basic word I-You to him, then he is no longer a thing among things nor does he consist of things.

He is no longer He or She, limited by other Hes and Shes, a dot in the world grid of space and time, nor a condition that can be experienced and described, a loose bundle of named qualities…

Even as a melody is not composed of tones, nor a verse of words, nor a statue of lines—one must pull and tear to turn a unity into a multiplicity—so it is with the human being to whom I say You. I can abstract from him the color of his hair or the color of his speech or the color of his graciousness; I have to do this again and again; but immediately he is no longer You. (p. 59)

As Buber goes on to suggest, the I-You mode of relationality being considered here is primary, in the sense of preceding the more objectifying I-It mode. As such, “We may suppose that relations and concepts, as well as the notions of persons and things, have gradually crystallized out of notions of relational processes and states” (p. 70). Along the lines being drawn here, adopting a relational research ethics entails a measure of “return” to a more primordial mode of encountering others, one that is more holistic, syncretistic, and, not least, respectful of the other’s integrity. As Buber puts the matter in another important text, Between Man and Man (1965),

This person is other, essentially other than myself, and this otherness of his is what I mean, because I mean him; I confirm it; I wish his otherness to exist, because I wish his particular being to exist…. That the men with whom I am bound up in the body politic and with whom I have directly or indirectly to do, are essentially other than myself, that this one or that one does not have merely a different mind, or way of thinking or feeling, or a different conviction or attitude, but has also a different perception of the world, a different recognition and order of meaning, a different touch from the regions of existence, a different faith, a different soil: to affirm all this, to affirm it in the way of a creature, in the midst of the hard situations of conflict, without relaxing their real seriousness, is the way by which we may officiate as helpers in this wide realm entrusted to us as well, and from which alone we are from time to time permitted to touch in our doubts, in humility and upright investigation, on the other’s “truth” or “untruth,” “justice” or “injustice.” (pp. 61-62)

On this account, we must somehow deepen our attention to and regard for the other in his or her otherness, his or her differentness. We must in fact “affirm all this,” take it to heart. Recognition is not enough; there needs to be care as well.

Of special importance in Buber’s philosophy is the idea of the “between,” which he (1965) considers “a primal category of human reality.” As he explains, “The view which establishes the concept of ‘between’ is to be acquired by no longer localizing the relation between human beings, as is customary, either within individual souls or in a general world which embraces and determines them, but in actual fact between them.” For Buber, therefore, “‘Between’ is not an auxiliary construction, but the real place and bearer of what happens between men” (p. 203). In sum: “On the far side of the subjective, on this side of the objective, on the narrow ridge, where I and Thou meet, there is the realm of ‘between’” (p. 204).

It should be noted that Buber is not addressing the research relationship here. Rather, he is speaking more generally of human relatedness, and issuing a call, as it were, for the kind of “abiding-with” that preserves the integrity of the other person in his or her uniqueness and differentness. This caveat aside, Buber’s perspective bespeaks what Josselson (2006) has called an “ethical attitude” that is surely transportable to the research situation. At the center of Josselson’s perspective is the importance of the researcher’s being in an “appropriately respectful” relationship with the participant. More specifically, “ethical practice and ethical codes rest on the principles of assuring the free consent of participants to participate, guarding the confidentiality of the material, and protecting participants from any harm that may ensue from their participation” (p. 537). As Josselson adds, focusing on her own area of narrative research, “Ethics in narrative research … is not a matter of abstractly correct behavior but of responsibility in human relationship” (p. 538). But what exactly is the responsibility being considered? First and foremost, it would seem, it would involve minimizing harm and bespeaks the kind of “procedural ethics” that are part and parcel of Institutional Research Boards (IRBs) and the like. This commitment to minimizing harm is surely a necessary criterion for theorizing a relational research ethics. However, it may not be a sufficient one. The question then is: How else might we think about the issue of responsibility in the context of the research situation?

According to Ellis (2007), alongside procedural ethics, “the kind mandated by Institutional Review Board (IRB) committees to ensure procedures adequately deal with informed consent, confidentiality, rights to privacy, deception, and protecting human subjects from harm,” there is also what she (drawing on Guillemin and Gillam (2004)) refers to as “ethics in practice, or situational ethics, the kind that deal with the unpredictable, often subtle, yet ethically important moments” that emerge when, for instance, “someone discloses something harmful, asks for help, or voices discomfort with a question or her or his own response” (p. 4). Important though these two forms of ethics are in the research context, there is, finally, “relational ethics,” which, on Ellis’s view, is closely related to the “ethics of care” put forth by Gilligan (1982), Noddings (1984), and others, and which “recognizes and values mutual respect, dignity, and connectedness between researcher and researched, and between researchers and the communities in which they live and work” (p. 4). Gergen, Josselson, and I have adopted a related stance in our (2015) discussion of “understanding with.” Generally speaking, we offered, “psychologists have drawn a sharp distinction between the observing scientist and the subjects of observation,” the goal being “to observe with dispassion, and avoid personal relations with those we study.” Important though this orientation may sometimes be, it “favors an analytic stance in which observing, categorizing, and counting are primary,” with the result that the subjects at hand are transformed into the objects of our own dispassionate gaze. With the rise of certain strands of qualitative inquiry, there has, by contrast, emerged “an abiding sense that our knowledge is not about you, but with you. Rather than playing cat and mouse,” therefore, “science and society collaborate in the search for understanding” (p. 7).

As one of the authors of this article, suffice it to say that I concur with most of it! At the same time, I find myself questioning some aspects of it as well. One question is whether a truly relational research ethics ought to be situated under the umbrella of “science.” There are, of course, political reasons for doing so. Foremost among them is the fact that the discourse of science and scientificity remains dominant in psychology and allied disciplines. For the most part, therefore, I have sought in my own work to adopt the relevant language, the goal essentially being to render the idea of science more capacious than it tends to be (e.g., Freeman 2007, 2011). In recent years, however, I have come to question this very commitment and have begun to wonder whether the kind of ethics being sought requires other, perhaps more art-ful, modes of inquiry altogether (e.g., Freeman 2015b, 2018). The other question that surfaces, especially in view of the idea of “understanding with,” concerns these very words: “understanding” and “with.” Understanding others, in the research situation and beyond, is surely a worthy goal at times. But it may not be the main goal. And, in the case of a phenomenon such as dementia, it may not be a feasible goal. Could I really “understand” my mother during the final portion of her decade-long affliction with dementia? Was that even something to aspire to? As for understanding with her, that was well beyond the scope of my “research.” Actually, was I even engaged in research? This, for me at any rate, is another one of those words that does not quite seem to fit with the broadly relational view I have come to adopt. Could it be that the very idea of a relational research ethics is questionable? Do the words “relational,” “research,” and “ethics” really work together?

Let me not quibble too much about these words, loaded though they are. “Relational research ethics,” Ellis (2007) tells us, “requires researchers to act from our hearts and minds” and “to acknowledge our interpersonal bonds to others” (p. 4). Moreover, Josselson (2006) had said, such an ethics is fundamentally about “responsibility in human relationship” (p. 538). As already noted, minimizing harm to those we study is certainly part of the picture. Nevertheless, I ask again: How else might we think about the issue of responsibility in the context of the research situation? Josselson herself provides some helpful clues in her discussion of benefits accruing from the research. “Those who argue for explicit benefits to participants are working in a social justice framework, hoping that their work will lead to empowerment of the participants and/or the group they represent and also engender better societal treatment of those whom they study. Those working from a basic science stance,” on the other hand, “implicitly assume that greater knowledge of human experience will lead to a more humane society” (2006, p. 555). These are valuable benefits, to be sure, and do well to move the idea of responsibility beyond that of minimizing harm. But there is still more. Whatever benefits might accrue from our research, there remains the issue of what was earlier referred to, via Josselson, as an “ethical attitude.” This attitude “involves deep contemplation about what it means to encounter and represent ‘otherness.’” Such an attitude also “mandates that the researcher question personal assumptions about the normal, healthy, or desirable” (p. 555). Taking these two aspects of the ethical attitude together, through the lens of narrative hermeneutics, research ethics has as its first and most fundamental commitment a stance of radical openness and receptivity to what is other.

With these last ideas, we return to Buber’s (1965) reflections on the I-Thou relationship. “This person” before me, he had said, “is other, essentially other than myself,” and “does not have merely a different mind, or way of thinking or feeling, or a different conviction or attitude, but has also a different perception of the world, a different recognition and order of meaning, a different touch from the regions of existence, a different faith, a different soil” (pp. 61–62). This difference is not only to be recognized but affirmed and respected. An important, if somewhat paradoxical, qualification needs to be made in this context—namely, that this dimension of difference being considered has as its counterpart a kind of intimacy owing to the shared humanness involved. As I have put the matter elsewhere (Freeman 2014a), however readily we might engage in dialogical relations with the other-than-human world, “there is no dialogue quite like the one we can have with another human being, and there is no ‘You’ quite like the one that assumes the form of the living, breathing person, standing before us” (p. 84). One very basic reason is that other persons “talk back” to us in a way that is, by all appearances, unparalleled. Amid difference, therefore, is a measure of sameness and familiarity. Another, related reason is that this talking-back bears within it a dimension of reciprocity. “Relation is reciprocity. My You acts on me as I act on it. Our students teach us, our works form us…. Inscrutably involved, we live in the currents of universal reciprocity” (Buber, 1970, p. 67). It is this condition of reciprocity that distinguishes the I-You relation, as manifested in the human-to-human encounter, from the encounter with the “It” world. As Buber goes on to explain,

In the It-world causality holds unlimited sway. Every event that is either perceivable by the senses and “physical” or discovered or found in introspection and “psychological” is considered to be of necessity caused and a cause…. The unlimited sway of causality in the It world, which is of fundamental importance for the scientific ordering of nature, is not felt to be oppressive for the man [or woman] who is not confined to the It world but free to step out of again and again into the world of relation. Here I and You confront each other freely in a reciprocity that is not involved in or tainted by any causality; here man finds guaranteed the freedom of his being and of being. (1970, p. 100)

And here also, amid this freedom, grounded in respect and reciprocity, is the dimension of responsibility. Following Buber, therefore, the challenge is to adopt a relational research ethics that preserves and honors the difference about which he speaks and does so in a way that underscores this dimension of responsibility. It is precisely at this juncture that the seminal work of Emmanuel Levinas becomes most relevant.

Emmanuel Levinas: Beholding the Face of the Other

“(T)here arises, awakened before the face of the other, a responsibility for the other to whom I was committed before any committing, before being present to myself or coming back to self” (1999a, pp. 30–31). As Levinas quickly goes on to ask,

What does this before mean? Is it the before of an a priori? But would it not in that case come down to the priority of an idea that in the “deep past” of innateness was already a present correlative to the I think, and that—retained, conserved, or resuscitated in the duration of time, in temporality taken as the flow of instants—would be, by memory, re-presented? (p. 31)

In other words: Is my responsibility—in this case, my responsibility to the other person or persons with whom I am engaged in the research situation—a function of some idea or principle that is now being recollected in my encounter?

Levinas’s answer is a firm No: “Here I am, in that responsibility cast back toward something that was never my fault, never my doing, toward something that was never in my power, nor my freedom—toward something that does not come to me from memory.” For Levinas, therefore, my “responsibility for the other is not reducible to a thought going back to an idea given in the past to the ‘I think’ and rediscovered by it” (1999a, p. 32). On the contrary, this responsibility is called forth, primordially, by the “face” of the other person.

Indeed, it is not a question of receiving an order by first perceiving it and then obeying it in a decision, an act of the will. The subjection to obedience precedes, in this proximity to the face, the hearing of the order. Obedience preceding the hearing of the order—which gauges or attests to an extreme urgency of the commandment, in which the exigencies of deduction that could be raised by an “I think” taking cognizance of an order are forever adjourned. An urgency by which the imperative is, “dropping all other business.” (pp. 33-34)

These are difficult words. Some of them—for instance, “obedience,” “order,” “commandment”—seem downright excessive, hyperbolic. Levinas himself seems to recognize this: “‘subjection to an obedience preceding the hearing of the order’—is this just insanity and an absurd anachronism?” (p. 34). Some readers may be asking the same question. What relevance can these elaborate words have for theorizing relational research ethics?

As important as Buber’s notion of the “between” may be for establishing a properly dialogical view of relational research ethics, Levinas seeks to move beyond it, precisely by positing what I earlier referred to as “the priority of the Other” (Freeman, 2014a). As he (1996a) explains, drawing on some of Buber’s own language,

The I-Thou relation consists in placing oneself before an outside being, i.e. one who is radically other, and in recognizing that being as such. This recognition of alterity does not consist in forming an idea of alterity. Having an idea of something belongs to the realm of I-It. It is not a question of thinking the other person, or of thinking him or her as other—but of addressing that person as a Thou. The adequate access to the alterity of the other is not a perception, but this saying of Thou. There is immediate contact in this invocation, without there being an object … The I-Thou relation, then, appears from the outset to escape the gravitational field of the I-It in which the alleged exteriority of the object remains held. (p. 22)

So far so good; it seems that Buber and Levinas are of a piece here. But Levinas is troubled by certain aspects of Buber’s thinking too, particularly the idea of reciprocity. This is “because the moment one is generous in hopes of reciprocity, that relation no longer involves generosity but the commercial relation, the exchange of good behavior…. (T)he other appears to me as one to whom I owe something, toward whom I have a responsibility” (1999a, p. 101). Levinas (1996a) therefore asks:

How can we maintain the specificity of the interhuman I-Thou without bringing out the strictly ethical meaning of responsibility, and how can we bring out the ethical meaning without questioning the reciprocity on which Buber always insists? Doesn’t the ethical begin when the I perceives the Thou as higher than itself? (p. 32).

Levinas (1996b) elaborates on this idea of “height” when he writes:

The putting into question of the self is precisely a welcome to the absolutely other. The other does not show it to the I as a theme. The epiphany of the Absolutely Other is a face by which the Other challenges and commands me through his nakedness, through his destitution. He challenges me from his humility and from his height…. The I is not simply conscious of this necessity to respond, as it were a matter of an obligation or a duty about which a decision could be made; rather the I is, by its very position, responsibility through and through. And the structure of this responsibility will show how the Other, in the face, challenges us from the greatest depth and highest height—by opening the very dimension of elevation. (p. 17).

There is more. “The one for whom I am responsible is also the one to whom I have to respond. The ‘for whom … ’ and the ‘to whom … ’ coincide. It is this double movement of responsibility which designates the dimension of height” (p. 19).

As opposed to Buber, therefore—or at least Levinas’s rendition of Buber—“There would be an inequality, a dissymmetry, in the Relation, contrary to the ‘reciprocity’ upon which Buber insists, no doubt in error” (1999b, p. 150). Levinas thus wishes to go beyond Buber’s dialogical form of relationality, his assumption being that it embodies an implicit contractuality, a mutual indebtedness, that cannot help but detract from the purity of the for-the-Other. However important Buber’s dialogical perspective may be in underscoring the primacy of the relational, it stops short of being truly ethical for Levinas, for the ethical, in his view, is precisely about the priority—the “height”—of the Other; and it is this priority that bespeaks the asymmetry of the ethical relation. As for the idea of responsibility, it is, again, not to be understood as “a cold juridical agency,” in the sense of a thematizable idea or principle that one applies to the situation in question. Rather, “It is all the gravity of the love of the neighbor” (p. 163), the responsibility I have, the responsibility I am, “coming from before my freedom, from before all beginnings in me, and from before every present” (p. 166). Levinas is speaking here of a kind of primordial responsibility, one that precedes the decisions one makes, the duties one needs to fulfill, or the particular responsibilities one has. The priority of the Other thus entails the primacy not just of the relational but of the ethical, and responsibility, to and for the Other, is its mandate.

Seen from one angle, it may seem that Levinas’s perspective cannot readily be applied to the research situation—if, by research situation, we are referring to the kind of situation one enters armed with a particular research agenda. If in fact I am interested in learning something about this or that phenomenon, via becoming engaged with this or that person or set of persons, how I can possibly avoid directing the course of the encounter, however gently, however unobtrusively? If “the ethical begins when the I perceives the Thou as higher than itself,” is not my research agenda compromised from the start? Strictly speaking, it may very well be. However generous, empathic, and relationally minded a researcher may be, there is a very basic sense in which he or she generally aims to “get” something from his or her research participants. Indeed, it might even be argued that the research relationship is, on some level, inevitably an I-It relation. How can one establish a truly relational research ethics given this most basic arrangement? Is it even possible?

The Project of Relational Research: Challenges, Opportunities, Consequences

Writing about my mother has been extremely challenging on a number of levels. As indicated earlier, there were some who found it hard to imagine how I could “distance” myself enough from the situation at hand to transform it into an object of inquiry. One of my closest friends, in fact, had referred to the unusual capacity I had to “objectify” what was going on in my life. I sensed both admiration in her words—for my ability to build a bridge between my life and my work, as well as repulsion—for what may have seemed like a voyeuristic venture out of bounds. She was much more the dispassionate empirical researcher than I was, so that was part of it. But the sheer fact that I was exploring and writing about my mother also made her uncomfortable. I am quite sure she was not alone in this. In fact, I know she was not. That is because I myself was sometimes uncomfortable doing what I was doing. At some point during the early years of my mother’s dementia, I would hear her say something that I found poignant or profound, and I would take out my cell phone and type it out. Should I be doing that? Should I really be taking a brief time-out from being her son so I could preserve her, and sometimes my, words? And should I eventually try to take all of these “data” and form them into stories, for conferences and book chapters and journal articles like this one?

Also challenging was the fact that my mother could not really consent to what I was doing—not, at least, in the informed consent mode of most social science. I told her what I was doing. And in true mother (or at least my mother) fashion, she seemed delighted by it. “Ma,” I might say, “as you know, I’ve been thinking and writing about people’s lives for a long time, focusing on topics like memory and self. And some of what you’re experiencing now is actually pretty relevant. Is it okay if I share some things about you and your experience in my writing?” “Of course you can write about me!” she would say. My son, the professor, the writer.

She had only the most minimal idea of what I would write about. In fact, she had only the most minimal idea she had fallen victim to dementia. The day she was diagnosed (with Alzheimer’s) she sobbed. But that night, she had no memory at all of having been diagnosed or having been to a doctor. She knew during the early years that things were amiss; she sometimes spoke of “being like a child” or being “brainless.” She also knew during the early years that the assisted living residence that she had moved to was not just for “senior living,” but for those who, in some way or other, were in significant physical or mental need. Remarkably enough, however, she reached a point fairly quickly in which she had virtually no knowledge at all that she was afflicted with dementia. Does it matter that she would become the subject of my musings with nary a clue of what the substance of these musings were? And, now that she is gone, does it matter that she will be the focus of a book about the final years of her life? There have been times through the years when I felt that I was somehow “taking advantage” of her situation. (One could argue that I am doing so right now, in this very article.) This is surely so on some level. What exactly justifies it? Anything? I could argue that writing about her meets some elements of the “social justice” framework discussed by Josselson insofar as it may “lead to empowerment of the participants and/or the group they represent and also engender better societal treatment of those whom they study.” I could also argue that it meets some elements of the “basic science” framework she discusses, which posited that “greater knowledge of human experience will lead to a more humane society.” Following Buber and, especially, Levinas, finally, I could argue this writing meets elements of what might be called a “compassion and responsibility” framework or some other such Other-directed conception. Following Levinas (1999a), this sort of framework should be understood as preceding matters of social justice, coming before them, serving as the primordial ethical ground upon which they emerge. Relational research, Levinasian style, might thus be seen as oriented primarily toward the ethical relation itself. Are any of these defenses sufficient to warrant and justify my efforts? I do not have clean answers to these questions. And the issues at hand may best be left in question form in any case.

Relational Knowing and Feeling

Now that I have provided some context for the kind of research projects in which I have been, and continue to be, engaged, I want to provide a closer look at the relational dimension, focusing especially on the trajectory of the 12-year period of my mother’s dementia. The task is an awkward one. Strictly speaking, I never approached my mother as a researcher. I never arrived at her place with any research agenda. I never had any specific questions in mind. Nor, more generally, did I ever hope to “get” anything from her; whatever I “got,” by way of profound words, meaningful actions, and so on, had emerged in the course of our relationship, through the many hours per week I spent with her. In what follows, therefore, I will not be addressing how the research relationship evolved but will instead focus on our interpersonal relationship itself: how it moved, by degrees, from being one in which I had my own personal agenda—my own images of how she ought to be responding to her situation, my own attempts to direct the course of things, my own “corrections” of her “misguided” view of her very life, and so on—to one in which she was the true priority and I, in turn, her “hostage” (Levinas 1996c).

This idea of being a hostage may seem odd, even impertinent, but it came to be an important idea in Levinas’s thinking. What does he mean by it, and how might it apply in the present context? In his essay “Substitution” (1996c), he spends some time addressing the curious state of the ego: “The ego is not merely a being endowed with certain so-called moral qualities, qualities which it would bear as attributes” but instead is always in the process “of being emptied of its being, of being turned inside out.” Moreover, “The ego is not a being which is capable of expiating for others; it is this original expiation which is involuntary because prior to the initiative of the will” (p. 86). In keeping with Levinas’s idea of responsibility as being beyond thematization, beyond some principle that one might apply to this or that situation, we see here its “involuntary” nature. And it is precisely this involuntary dimension—our “captivation,” one might say, by the Other—that leads him to the metaphor of the “hostage”: “It is through the condition of being a hostage that there can be pity, compassion, pardon, and proximity in the world—even the little there is, even the simple ‘after you, sir’” (p. 91). Or, in the case of my relationship with my mother, even the simple “Hey, ma. Want to go outside and sit in the sun for a while, feel the warm breeze, maybe have a sweet snack?” We will do whatever you want, whatever you need. Period.

My responsibility in spite of myself—which is the way the other’s charge falls upon me or disturbs me, that is, is close to me—is the hearing or understanding of this cry. It is awakening. The proximity of a neighbor is my responsibility for him; to approach is to be one’s brother’s keeper; to be one’s brother’s keeper is to be his hostage. Immediacy is this. Responsibility does not come from fraternity, but fraternity denotes responsibility for the other, antecedent to my freedom. (Levinas 1996d, p. 143).

Even if responsibility does not derive from fraternity—or, in the present case, the condition of being a son—it is, arguably, intensified by it. The notion that we are as responsible to the stranger as to we are to the family member or friend stands, as ethics. But the situation changes on the psychological plane. I may have been a hostage to everyone on the floor where my mother would eventually live. I heard all of their cries. But not in the same way I heard hers.

It would take some time before I could give myself over to my mother in this way. Even then, this giving-over was, and could only be, partial—“aspirational,” one might say—owing to the ostensibly inevitable intrusion of my own ego-driven needs and wishes, issuing their own demands. From this perspective, and as I shall show in greater detail shortly, affirming the priority of the Other, in the research relationship and elsewhere, is never wholly unalloyed, ego-free, “pure.” Indeed, however primordial the ethical relation may be, it can be and frequently is overwhelmed by what Iris Murdoch (1970), following Freud in broad outline, has referred to as the “fat relentless ego” (p. 51). This is no doubt one reason why human relations are as fraught as they are. Bearing these ideas in mind, let me briefly sketch the trajectory of the 12-year period of my mother’s dementia, with special attention to the ethical dimension of our relationship. The initial phase, which I have sometimes referred to as a phase of “protest,” was frequently hellish. Having no memory at all of our having visited a number of different assisted living places before choosing the one to which she eventually moved, she was convinced she had been put there against her will. And having no memory of our having visited her, frequently, she would speak of being alone and abandoned. She would sometimes get very angry too, and there was nothing we could do to stop it. “I think I would know if you were here,” she would say. “Well,” I might have responded, “apparently you don’t.” It wasn’t unusual back then from me to “correct” her in this way, to try to set her straight. Issues arose about her competence as well. “I know I can still drive just fine,” she would say. “I’ve always taken care of my own papers.” “I’ve never been late with a check.” And when I would question these abilities, as was sometimes necessary—or at least seemed so at the time—her response would be swift and sharp: “I’m not an imbecile.” Or: “You’re treating me like a child.” “What do you want, ma?,” I asked her one day. “I want to be a person,” she said.

It was in light of these issues that, in the first piece I wrote about her (2008a), I put forth the idea of “deconstructing the cultural story,” my suggestion being that a portion of my mother’s response to her current situation might plausibly be considered the “product of a culture that, in a distinct sense, refuses to admit the reality of decline, and death, into its midst.” What I also suggested was the existence of a “dual narrative … operating behind the scenes of consciousness.” First, there was “the narrative of the vital, self-sufficient Individual, who resists the kind of fragility, vulnerability, and dependency that growing old sometimes brings in tow” (p. 176). It was surprising to learn how pervasive and potent this narrative was, and how resistant it was to being modified. Second, there was what I called “the narrative of inexorable decline,” which, in a distinct sense, operates in tandem with—and is on some level parasitic upon—the first. What I was seeing back then were, essentially, the ways in which certain aspects of historically constituted features of subjectivity—having to do with autonomy, self-sufficiency, the denial of death, and more—had become inscribed in my mother in such a way as to render her life extremely frustrating and painful. I so wished that she could let some of these features go. In fact, I tried to help her in this by offering some counter-narratives—for instance about vulnerability and dependency and fragility, how these were okay. My mother could not go there, though; the narratives in question went too deep; they were too much a part of her.

These were tough times. And if truth be told, I sometimes was not at my best back then. Her incessant repetition of questions could be annoying. Her refusals to believe the truth—for instance, that she had hidden things away only to have become convinced that they had been stolen from her—were frustrating. And her accusations, especially those having to do with the (alleged) fact that my brothers and I had placed her in assisted living against her will, that none of us wanted her, that I never came to see her, and so on, could be downright maddening—and this, of course, despite the fact that she was utterly helpless to do anything but exactly what she was doing. So, there I was getting angry at my failing, frustrated mother for doing things she could not possibly help doing. I look back humbly on this inaugural period. It was painful and difficult to see her so compromised, and, as I can see now, I did some serious protesting of my own.

I also began to see a correlation of sorts back then, one that in its own tragic way promised a measure of reprieve, for my mother as well as for me: the more her ego was on the line, her autonomy and self-sufficiency, the more painful things would be. And the more her ego was muted—listening to music, going for a beautiful fall drive—the more at home in the world she would be. It was around this time that I realized that as her dementia progressed, she herself would likely feel less tortured by her life. I even entertained the idea that she might be able to achieve a kind of mystical union at times through the diminution of her self. Hence what I referred in the first piece I wrote about her as dementia’s “tragic promise” (2008a): owing to her continuing demise—and in turn her “unselfing,” as Murdoch (1970) might put it, she would have an unprecedented opportunity to be truly present to reality. It would be a quite different path to the kind of selflessness frequently associated with meditation, mindfulness practices, and so on—a kind of crash course, you could say—but it would be no less ecstatic for all that. Or so it seemed. Is it possible I elevated some of this, made it seem a bit “happier” than it was? Possibly. It is possible, that is, that I needed to see her, and portray her, in a more positive way than reality—than she—dictated. I would not say that what I saw and wrote about back then was false. But it was incomplete. In some ways, I was not quite ready to let her be who she was, in all of its messy multiplicity. Instead, I needed to find some silver lining, some redemptive moment to the devastation I was witnessing. And as a result, I was not as present to her as I might have been. Put in Levinasian terms, I had yet to become hostage to her, yet to be captivated, by her “nakedness” and “destitution,” her fragility and need. I say this not in the name of self-condemnation; it was what it was. I say it in the name of reflexivity as well as relational ethics. It is imperative to try to discern one’s own motives in this kind of situation.

Not surprisingly, this ostensibly happier phase proved to be short-lived. For, instead of the seemingly selfless state of carefree abandon that would sometimes come her way, she would frequently experience a kind of existential “dislocation,” such that everything would become utterly alien to her (Freeman 2008b). Waking up in the morning, she was generally fine; the routines began and she could make her way through them without getting too disturbed. But she would sometimes wake up after an afternoon nap and find herself completely lost, scared and panicky. It was around this time that I would sometimes get a call at work. She had to speak to me, now. Or I, or my wife, had to drive over to see her, be there in person. “Where am I?” she asked one time. “How long have I been here?” “It’s been five years, ma.” And then the refrain: “Oh, my God. Oh, my God,” occasionally followed by a Yiddish phrase that translates as, “Oh, what a person becomes.” Even though she could not remember much about herself, she knew enough about what she no longer was that all she could do was grieve (Freeman 2009).

I was not just a caregiver at this phase. Oftentimes, I was essentially a lifeline, her sole point of entry to reality. Leaving her behind after a visit had always been difficult, but it was much more so during this phase. On a good day, it probably did not matter much; she would quickly forget me having been there and carry on with her life. But I have no doubt that on other days, she would feel abandoned, alone, and confused again. And although I did what I could to endure her confusion and pain, there is no question but that I fled from some of it. In this context too, I need to be extremely careful about how I discern the relevant “data” and how I present her in my writing. That she would have suffered no matter what the circumstances—and no matter what role I might have played—is surely so. Again, however, I need to be reflexive and try to gauge my own “contribution” to the data and the resultant story. As noted already, the kind of situation I am addressing here is less about relational research ethics than it is about ethical relationality. It should be clear, however, that the two are intimately related, and that by exploring the latter we can acquire some helpful clues about conceptualizing the former.

I have spoken of the final phase of my mother’s dementia as one of “release.” As I had predicted in the first piece I wrote, where I had addressed “dementia’s tragic promise,” things would in fact eventually change for the better, at least subjectively. My mother would eventually move to a “healthcare center” (aka nursing home) nearby, where she lived for 6 years, and owing to the progression of her disease, she moved beyond the kind of panic and confusion described earlier. Seen from the outside, her situation was bleak. In addition to dementia, she had chronic obstructive pulmonary disease (COPD), she was in a wheelchair, her paper-thin skin was all mottled and black and blue, and she was virtually blind. Moreover, she had only the most minimal sense of her own existence and identity. And yet, there was still a sense in which my presence seemed to mean something to her, something that somehow touched upon who she was and what she had been. There would sometimes be a little surge of confusion when I would go to leave. “Where are you going? Do I go with you?” More often, though, there would be gratitude. I do not want to call us “lucky”; that would be stretching things. But the fact is, we shared a lot of time together in her final years, and moments of intimacy, of a sort we would almost certainly never have had had she not fallen victim to this disease.

In the Name of the Other

I do not want to sugarcoat things. Occasionally, my mother would suffer another bout of painful confusion. And every now and then, especially when people tried to rouse her in the morning, she would become aggressive and strike out at them. However, all things considered, her final years were pretty good ones—if by “good” is meant a life relatively devoid of excessive suffering, occasionally punctuated by moments of human connection and pleasure. This in fact would ultimately become my primary purpose when I would go to see her: I would set aside my own life as best I could and simply try to be there wholly for her. As I have noted elsewhere (Freeman 2014a), I have no interest at all in portraying myself as some sort of caregiver-hero. There were times when I thought about going over to see her and did not. In addition, and again, there were times when my own preoccupations took center stage, with the result that she became veiled, her face all but occluded from view. I also avow that there were some quite mundane, even ego-centric, reasons for my going to see her. As I had (2014a) put the matter, “I go to see her because that’s what you’re supposed to do, or so she knows what a good son I am, or to assuage some of my own guilt.” As noted earlier, living the priority of the Other—and carrying out relational research—may never be completely “unalloyed,” untainted by ego-centric motives. “But,” I continued,

I also go to see her for her—because she is alone and in need and my visit brings her one of her few moments of pleasure in life. It’s not easy. I often dread going up in the elevator to her floor; there is always something disturbing or depressing going on. Leaving is no better. I go marching off to work or dinner while she sits in a circle with fading, withered, like-minded others, watching some awful TV show or tapping a balloon into the air during “recreation” period. But in the middle is … her, her simple presence, disrupting me, drawing me forward, outward. She is sitting in a wheelchair, slouched, eyes closed. I walk over and tap her lightly on her shoulder or fiddle playfully with her hair. Her eyes crawl open, she turns her head toward me, and she smiles a faint but radiant smile. I so want her to feel whatever joy she can. (p. 20)

I am not proposing that relationally oriented researchers ought to tap the shoulders of their research participants or play with their hair. Nor am I suggesting that they should have as their primary goal bringing joy to those whose lives they are exploring. The situation I have been addressing is not a typical research situation and the sort of unfettered “availability” I have just described may seem utterly impertinent in other contexts. Nevertheless, the idea of letting the person or persons in question direct the course of the inquiry and drawing the resultant data from the ongoing movement of relationship itself, wherever it may go, strikes me as a potentially valuable counterweight to the more acquisitive, agenda-driven style of most social science research. In some respects, this approach is a phenomenological one, rooted in what I earlier referred to as practicing fidelity to the lived reality of the lives being explored. It is also a devotional one, one might say, in which giving oneself over to the other and prioritizing her life and well-being is key.

In the end, I came to see the relationship I established with my mother, and the more general idea of approaching another person emptied of self-interest and giving oneself over to her in care, as a kind of ideal type—which is to say, a form of human relatedness that bears within it just the kind of being-held-hostage by the Other that Levinas has described. He has been criticized for being hyperbolic in framing human relatedness in this way. I am open to a similar criticism in the way I have framed relational research ethics. What can it possibly mean to give oneself over to the Other in the context of the kind of research most people do? What exactly is being called for here? How is it to be brought into practice? There are no simple answers to these questions. What may be most important, in any case, is the kind of ethical attitude one adopts as one carries out one’s research. For Josselson, you will recall, such an attitude “involves deep contemplation about what it means to encounter and represent ‘otherness’” and “mandates that the researcher question personal assumptions about the normal, healthy, or desirable” (p. 555). It also mandates that one try to meet others where they are, no matter where they are, and to do so without judgment, without expectations, needs, and wishes—without will, in a way. It may ultimately be impossible. But holding such an attitude in mind, as a kind of regulative idea and ideal, may nevertheless be of value in carrying out relational research as well as living out the kind of human relations to which we might aspire. The perspective being advanced herein may well strike some readers as too radical, too far removed from the norms and necessities of social science research, however sensitively it may be carried out. One reason, discussed earlier, is that the very idea of a research agenda is inevitably undercut, even undermined, by the kind of relational stance being suggested: insofar as the Other is given priority, I—my wishes and needs, my goals and objectives, as a researcher—am relegated to a distinctly “secondary” position. Ultimately, I had to go where my mother led me. For me to have done anything else would have been patently unethical; it would have meant my controlling her in some way, directing the course of action in such a way as to produce a result, a “finding.” This situation was of course unique in some ways; as such, I am not in a position to recommend such an “aimless” relational stance to others. Nevertheless, this aimlessness, this stance of being-led-by rather than leading, stands as a kind of regulative ethical idea and ideal.

The other reason the perspective being advanced may be deemed too radical, or impracticable, is that upholding the priority of the Other in the research relation also means serving the person or persons in question—not just acting on their behalf, in the sense of meeting some particular need or serving some social justice cause, but being on their behalf. This stance is in keeping with Levinas’s (1985) positing of “responsibility as the essential, primary and fundamental structure of subjectivity” (p. 95). Can researchers really be expected to adhere to such a stance? Can one really approach the research situation in such a way that the ethical comes first—that is, in such a way that the person or persons in question not only “lead the way,” as above, but direct the very meaning and purpose of one’s engagement? Strictly speaking, probably not; the project of research itself would seem to militate against it. But just as the aforementioned aimlessness may be seen as a regulative idea and ideal, so too may the ethical priority of the other. Moving in this direction leads to a very different conception of the research endeavor. Difficult though it may be to put fully into practice, it may nonetheless be worth considering, at least by those of us seeking to re-imagine and perhaps reconstruct the research relationship.