Dawn Nafus is an anthropologist with Intel. She is also on the advisory board of Atlas of Caregiving, was deeply involved in the Pilot Study, and participated in parts of the Mapping Santa Barbara project. Dawn has published two books, as co-author of Self-Tracking, and as editor of Quantified: Biosensing Technologies in Everyday Life.
Rajiv: What is your caregiving experience, right now and in the past?
Dawn: About a year ago, my dad had a very serious heart emergency. My parents live on the East Coast, so there was just a lot going on with travel and making sure he got what he needed. We’re still dealing with the repercussions of that, but it’s not an intense kind of day to day thing as it once was.
I also have had two issues with my leg. I broke my kneecap about three years ago. That required me to be on the couch for about three months, and then it was another three months relearning how to walk. To this day there’s still some weakness that constrains me. Then about five months ago I broke my ankle. My very patient partner was the caregiver in these situations.
Then there was also a woman who took care of my cat. Two weeks ago I got a tweet saying, “I’m a friend of your cat sitter.” It turns out our cat sitter had passed away, after a two week ordeal. She didn’t have health insurance, so she didn’t get the medical attention she needed. The person who contacted me, her friend, is now trying contact her friend’s clients to continue to care for the animals. It’s odd because the cat sitter was not a person that was emotionally close to me, but her absence made me appreciate just how deeply she really did care for our cat and our lives. Care that went well, well beyond a kind of transactional idea. Thinking about her has been making me think about care. And her friend, who is now trying to piece things back together is building a network of people, her friend’s previous clients, who might end up caring for each other because her friend cared so much about us all.
What is your professional background, your fields of expertise?
I’m a social anthropologist by training so I think a lot about how culture works, how people build relationships, and the assumptions that people make about social relationships. Caring absolutely comes into that. In our deep collaboration [the Atlas Pilot Study] we had talked with caregivers about their day to day, what goes on and what care work really involves. I have also been doing work in medical technologies for a long time, trying to understand how people understand them. That involved work in the Quantified Self community, and so I am very attuned to the kinds of things that are worth keeping track of in a non-medical way.
How have your professional skills and perspectives influenced or impacted your caregiving efforts?
When dad had his heart problem, he went into emergency open heart surgery. Really not good. But medically things were great — they are very lucky to have proper health insurance, they live next to a major cardiovascular center, and have access to extremely good medical care.
But the Atlas Pilot Study had really attuned me to the fact that patient advocacy was a real thing, and if you don’t do it there can be serious problems. It had attuned me to things like, what’s going to happen here is all the friends and relatives are going to want updates. That in a way is an expression of care. But one of the things we have learned in the study is that managing all of those people who want to help is also part of the caregiving work. You don’t know how to ask them to help, and just managing all this interaction is kind of a big deal. So for the time that I was there [on the East Coast], I ended up taking on some of that.
My Quantified Self experience also helped. When dad left the hospital and the rehab center, they wanted him to do blood pressure monitoring. So of course I got him the fancy Withings cuff all the Quantified Self people like. There’s an app and I made sure to let everyone know about it. I got it because it was important for different people to be able to see the data, not just my dad. It’s not like it was more accurate, but it was beautifully designed, not like those frankly ugly medical implements, and the data could be shared and you could get to it through your phone. There is I think a certain amount of respect involved in that, as it was a matter of debate whether he had a blood pressure problem to begin with. So the family would have evidence now. And even the nurses came round and they’re like “Oh you’ve got a better pressure cuff than we do.” More importantly, maybe, it was not unpleasant to use; it didn’t make [my dad] feel like a patient, where everything else around him made him feel like a patient.
Regarding my own care, I am a person who really struggles with issues to do with the body, with medical people touching the body, especially injections and anything invasive. Like clockwork it will induce a panic attack. My profession talks about this idea of the patient role as a kind of automatically passive role, socially speaking. It’s not where the power is. Medicine in a way is organized around that notion that experts know best. Knowing this enabled me to really be an advocate, helped me advocate for myself and sort of take control of situations when normally that’s not my style or inclination.. So I was able to tap into that assertiveness a little bit because I knew what was happening socially, and I could be very pointed about what I was inviting medical personnel to do and not do, and being very clear about, Yeah I know I have some wire in my knee cap now, and I need to know exactly how much you’ve used and exactly what those materials are because years down the line I want to know what kind of medical imaging I can get and not get.
But, while I was physically incapacitated, my partner was also dealing with a death in his family, someone he was close to. So we were basically both falling apart. I think at that point when you’re just both falling apart, there’s nothing about a broader anthropological perspective that’s going to help you through that. It’s like you know that it just sucks right now. And the best we can do is just be super, super patient with one another, and alternate when we fall apart so the other person can support. That’s the way it is.
How have your caregiving experiences impacted your professional efforts?
This has really attuned me to the idea that care is not individual. Seeing the friend of my pet sitter trying to build up this community has made me deeply aware of just how important community and mutual support is. I’ve started to plough that energy into something unrelated but still connected to that notion of mutual support. I’m program co-chair of my professional association conference this year. It’s called EPIC. I’ve started to think about that in terms of not just speaking opportunities and career development, but from a perspective that it’s much more about just the sense of mutual support. And care in an emotionally genuine way. Putting those two words together for me still feels a little bit icky because I’m still a little bit British and emotionally constipated [Dawn got her PhD at Cambridge], and so I don’t like to talk about this stuff that much. But it’s true that people in professions need care, that the jobs we do are hard and sometimes they stink. So I’ve been very much thinking about EPIC as what are the kinds of things we need to do to mutually support one another both as people and as a profession. As opposed to who is doing the most creative, fancy paper … I’m not so interested in that any more.
What one piece of advice would you give someone who found themselves in similar caregiving situations?
I would say … of course I say this because I’m an anthropologist but … I would say listen carefully to the folks around you for both what they say at a literal level and also what they mean, which sometimes are different things. The tricky part is sometimes what they’re saying is really what they do want you to take seriously right now, and sometimes there’s subtext to it. Knowing how to judge the differences is hard but also important.
Interviewed: 19 July 2018, by Rajiv Mehta
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