A Child's Father

My father, or pappa (we are both Swedish), was diagnosed with early onset Alzheimer's disease when he was fifty-three. I was twenty-three at the time and had been living away from home since I was sixteen. One of my ongoing hopes after I moved away – to the extent that I thought of it as ‘a project’ every time I was visiting my parents – was to reconnect with my father. Actually, I thought it was he, as my father, who was to take the first step and apologize for not calling me up and not caring enough about my studies and my life. As a feminist, I was also angry with him for relying, as many men do, on my mother to be the parent of care and support. Still, I had begun to swallow some of my pride and realize that it was better to have some relationship with my father that was initiated and driven by me than none at all. But I was still not sure how to reconnect with him.

One day my mother called me up and said that my father had developed Alzheimer's disease. She also reminded me that he would be flying to visit me in Stockholm from the island Gotland where he lived and where I grew up. His trip was organized to attend the annual cooperative dairy board meeting where he had long served as a member. I remember it as if the visit was the very next day – but it was probably in a couple of days or even a month later. I was comforted by my best friend Josefine with whom I was fortunate to live at the time, but, as I recall, I barely had the time to take the news in before my father was to arrive. Instead it felt like I went straight into practical mode about arranging his visit.

On the morning he was supposed to arrive, my mother called me up in distress to let me know that my father had forgotten his luggage in the taxi to the airport, including several important travel documents. She could not get hold of him and no one seemed to know whether he had made it to Stockholm at all. I frantically made my way across town to the conference hall where his board meeting was supposed to take place. To my immense relief not only had he somehow made it there, I also arrived just in time to hear him give a graceful speech thanking people for the time he had with them on the board. I can't remember the details, but I cherish that memory of feeling pride in my father for his generosity and his way with words when the occasion called for it.

At the same time the chaos that had surrounded his arrival brought my father's condition into stark focus. While baking scones together later on the same day, I plucked up courage to ask him how he felt about ‘the news’. He seemed optimistic; he thought they'd soon be able to find a treatment or a cure. Needless to say, they have not. Even then I did not share his optimism and it broke my heart. Terminal conditions such as Alzheimer's disease are precisely heart-breaking; there is no ‘cure’ or real treatment. There are of course drugs that stimulate certain neural regions to compensate for the decline of other regions and there is therapy and medications that alleviate side effects like anxiety and depression. But at least as things stand there is no way to rid oneself of the diagnosis. I believe it is this terminal feature alongside the final absence of our prized intellects that largely accounts for why this condition, like profound intellectual disability, is perceived as so scary to many of us and why individuals with these conditions have suffered similar cruel histories of exclusion or marginalization from society.

But that is not the same as thinking that there is no hope and value in relationships with people with Alzheimer's (and with other intellectual disabilities) – including hope and value in my relationship with my father. There is hope, as I will argue, but this hope could not be one of recovery or indeed of reconnection with my father as the man he once was or as I remembered him to be. Nor do I think the hope is captured by Eva Feder Kittay's (Reference Kittay1999: 163) notion of preservative love where safety and attention to medical needs are paramount – although, of course, there is preservative love of this kind as well.

Rather the hope I want to discuss here was that my father and I would be able to retain and develop whatever it was that was valuable in our relationship. But this love and bond in our relationship, during the many phases and years of his disease, turns out to be poorly captured by models of sociality.

Sociality as a Matter of Rational Exchange and Cooperation

A dominant model of sociality is one where two or more autonomous, ideally equally rational, agents have produced some goods to exchange or reciprocate; simply put, what occurs among people in the marketplace. Another common paradigm is that of two or more agents cooperating to achieve aims that are shared between them but would not be attainable on their own: what occurs when a sports team scores a goal or when you and I move a piano together. These examples of sociality abound in economics, political philosophy and psychology alike. The rational exchange and cooperative models are of course only intended as idealizations, but, as models, they are at least supposed to capture the basic points and dynamics of social interactions.

But do such models capture the nature of social interactions in the context of Alzheimer's disease? There is of course a sense in which there was reciprocity in my relation and concern for my father – during many years he was highly ‘productive’, not least in jointly raising myself and my three younger siblings. But I contend that the way in which I am indebted to my father did not determine the nature of our relationship when he got Alzheimer's.

First of all, the dynamics at the heart of most social interactions – and certainly the one's with my father – are in fact not best captured in terms of reciprocity or cooperation at all since there is no expected material reward, and, indeed, no clear goal at all (Godman Reference Godman2013: 590 ff.). Think of two people going to the cinema on a first date: is the point to watch a film, to hook up, or just to get out of the house? Rather than single out one of these (or all of them), I believe that this activity, just like many others, is not driven by some overarching goal that is shared by all agents. Instead the interactions are either partly or entirely a matter of exploration. This explorative nature of sociality is particularly clear in the case of interactions with those with Alzheimer's disease, where having a goal of an interaction or expecting reciprocation will often lead to disappointment.

Second, when such rational exchange models are evoked in ethics and political philosophy, they represent a highly limited and potentially damaging understanding of what it means to be a person. In particular, as Kittay has vividly shown, such models associate personhood with the capacity for rationality and productivity since these features are typically criteria for a successful cooperation (under threats of defection) and of a rational exchange. Kittay, drawing on her relationship with her daughter, who has a profound intellectual disability, rebuts this notion of personhood as a reductio ad absurdum:

So, if models of sociality are truly to be about people and their sociality they cannot rule out people with Alzheimer's and intellectual disability by default – people like Kittay's daughter and my father. Any model of sociality that should work as a foundation for our ethics and of human flourishing that disqualifies certain people simply needs to be rejected.

Eva Feder Kittay and the Importance of Human Dependency

Kittay (Reference Kittay1999: 25) points out that some central characteristics of a person are inherently relational: being a child is inherently dependent on having a mother, and being a father is inherently dependent on having a child. Kittay argues that these inevitable dependencies are features of people that cannot be ignored. A person with Alzheimer's is a vivid case: he is inevitably dependent on other people for fulfilling his fundamental needs. But such dependency on others permeates our personhood more generally according to Kittay.

Sociality is then not something that emerges from the needs of autonomous agents. For Kittay it is the other way around; personhood can emerge precisely though our social relations to others. This becomes a political matter, since, according to Kittay, our inevitable dependencies on others must be taken into account in the design of just institutions and not, for instance, be allocated to a private realm beyond the reach of politics.

A fair relationship, where one of the parties is also dependent on the other, is of course an idealization that is often imperfectly realized in our world (just like a fully rational exchange, for that matter). For one, being a parent, carer, and daughter, often requires further dependencies – providers of what Kittay calls dependency work. Currently those arrangements are far from satisfactory as they have been in many points in history: ‘At once sentimentalized and despised dependency work has been unevenly distributed among gender and even among women’ (Kittay Reference Kittay1999: 28).

Some social dynamics within a dependency relation can also lead to exploitation. Kittay discusses cases such as when the dependency worker or caregiver is materially dependent on a breadwinner, and in this ‘secondary status’ becomes vulnerable to poverty, manipulation and abuse (ibid. 42ff.). This is also a worry highlighted by many feminists: imbalances in economic power in romantic relationships renders the financially dependent (typically, woman) vulnerable to exploitation in other domains (e.g. sexually or in terms of domestic labour). But of course, exploitation or illegitimate use of power may also be at the hands of the primary caregiver in relation to the dependent or charge. This is a vulnerability that children typically share with adults with Alzheimer's and intellectual disabilities.

Conversely, dependency work can also become too taxing, to the point of being self-annihilating, for the caregiver. I think my parents’ relationship could have become one of those had other options not been available. My mother did not marry my father to be a caregiver. Their relationship was one of aspiring equals in dependency: they ran a farm together, had children together, and were to grow old together. That is not to say that my parents’ relationship always kept in step with this ideal, but that both the reality as well as the ideals of the relationship were profoundly transformed when my father got sick. My mother adapted. She became his main caregiver for ten years while my father gradually grew more and more dependent on her for his ‘space of functionings’ (Sen Reference Sen1992). At this point, still being well below her age of retirement, it became too difficult to maintain her teaching job while caring for my Dad. What's more, the experience of how her husband and their relationship had been altered was itself taking too much of a toll. Fortunately, there was a place for my father in a nearby state-subsidized dementia care home where he could receive close enough to the best possible care and where my mother was also able to visit regularly.

I believe that, from both my parents’ perspective, it was good that my mother's dependency work was eventually distributed to others. It is of course difficult to generalize, but often for those suffering from Alzheimer's disease, I believe that the best providers of care are not always those with whom one shared a prior close relationship. In fact, as I will discuss more in the next section, the prior bond may have a better chance of remaining without the strain of becoming transformed into a relationship of care (to a husband, wife, or father, for example).

Kittay's work rightly stresses our dependency and the importance of dependency work for being a full-blooded person. She is also rightly alert to the unjust conditions of dependency work and suggests strategies for improving matters. However, I draw a different conclusion from her. I think the problematic cases of dependency (unfair distribution, exploitation and self-annihilation) show that dependency perhaps should not be thought of as the central characteristic of how our sociality relations matter to our personhood either. Just as there is a danger of equating sociality with rational or cooperative exchanges, at its core sociality is not chiefly valuable for providing care either.

On some occasions in Kittay's writing, it seems that it is not dependency per se that matters for her social view of personhood, but rather the value of a relationship (see the initial quote of the article, for example). It is also this idea that I want to pursue in the next section.

The Inherent Value of Sociality

Throughout his disease my father remained my father, but it was very difficult to define what that relationship was. Certainly, he was not my father and I was not his daughter in the way we used to be. Some things we still shared. For quite a long time we would enjoy swimming and exploring the woods together and for an even longer time we would dance together – also in the room of his care home. My father was once a grand storyteller and storytelling was an activity we still shared for a long time – although it became a matter of me sharing my stories and reading to him rather than the other way around. And instead of responding with hearty laughter, I noticed a diminished strain on his forehead and occasional smiles in my direction – a reaction not so much to the content of the tale, but to the steady narration of my voice.

Many speak of roles being reversed between parents and children when parents age and especially if they get dementia. In terms of caregiving this is true. But the notion of reversal does not capture the many other facets of how such a relationship changes that are not forged within the structures of social roles. Before my father got sick I had yearned for a reconnection where he would resume his proper role as a father. When I knew that this was not possible, it also enabled a relationship that was not shaped by the expectations that come with social roles. My father, for his part, continued to show affection to those with whom he had social bonds, while increasingly losing a grip on their role in relation to him.

While our social roles and obligations to others are no doubt important for guiding our behaviour, I think this shows that they do not exhaust the meaning of our relationships. A case of this is friendship. It is notoriously difficult to define friendship in terms of its social role. Yet many of us will follow Aristotle in holding friendship in high esteem for its contribution to eudaemonia (roughly, happiness or well-being). For Aristotle eudaemonia meant sharing one's life with others, not least in relationships of friendship; relationships among equals (Sherman Reference Sherman1987).

I want to make a similar point about the shared life in general and its inherent value. It is the value of sociality itself, and not what it produces or the roles that attach to it, which explain how central relationships are for us to be persons capable of flourishing (Godman Reference Godman2013). It is also that value residing in a particular relationship which is foundational for the hope I nevertheless felt when my father got sick. While there are other needs and values of social interactions and relationships, the central inherent value of sociality becomes especially clear when a relationship is formed outside a clear sense of roles or when there is huge alteration of self and one's capacities (as was the case with my father). After all, many of our social bonds are forged in relationships of unbalanced intellectual and productive capacity – and even if the relationship is among equals, as Aristotle urges is the case in true friendships, this fact might be beside the point when it comes to its value.

The rational exchange, cooperation and even dependency model of sociality all tend to miss its inherent value. Take the model of sociality in terms of cooperation in psychology. In an interesting study, researchers compared a couple of children bouncing a ball back and forth to each other on a trampoline with a couple of chimpanzees doing the same thing. It turned out that children engaged in this mundane game for much longer than the chimpanzees despite there not really being an obvious goal or point to the task (Warnecken et al. Reference Warnecken, Chen and Tomasello2006). To explain this result psychologists Michael Tomasello and Melinda Carpenter suggest it is simply because ‘humans collaborate just for the sake of collaborating’ (Reference Tomasello and Carpenter2007: 123). Indeed. But why should such games even be understood as ‘collaboration’ rather than merely playing or enjoying doing things together for their own sake? I actually believe it is the other way around: we are motivated to engage and collaborate with others because it is rewarding in its own right.

With colleagues Michiru Nagatsu and Mikko Salmela, I have therefore argued that the intrinsic rewards of social interactions and relationships are what allows for cooperation and joint goals in the first place (Godman et al. Reference Godman, Nagatsu and Salmela2014). For example, we argue that social motivations (e.g. for playing together) typically allow for smoother coordination compared to a joint goal (e.g. to bounce a ball back and forth together for as long as possible) because social rewards are not compromised by high-level conscious processing about whether a situation is truly a win-win scenario or whether there is a joint goal among participants. Social motivations allow us to get lost in the activity itself.

Considering human evolution, there is also good reason to think that inherent social values and rewards guide our interactions and relationships with others. Social rewards can promote not only cooperation, but also social learning from imitation and observation (Heyes Reference Heyes2012). Perhaps most importantly, social rewards allow us to form precisely relationships with others. Science spanning from primate research (e.g. Silk et al. Reference Silk, Alberts and Altmann2003) to economic studies (e.g. Helliwell & Putnam Reference Helliwell and Putnam2004) in turn testifies to the importance of relationships for our well-being, reproductive success and longevity.

My experience of giving academic talks about the value of sociality and social motivations is that people are nevertheless embarrassed by and sometimes even ashamed of these base drives. While their reality is seldom denied, they are typically considered a by-product of more important ‘products’ (knowledge, money, reputation, etc.) being exchanged or personal goals being attained within relationships. Perhaps the discomfort about not only being dependent on others for one's needs but also for one's flourishing is also why we tend to overlook the central and inherent value of sociality in the design of institutions – including institutions of care.

Now the irony of my father's disease was that the value of sociality was never lost on him. On the contrary, it was constant throughout his cognitive decline, revealed in his interaction with family, friends and caregivers.