{"id":200,"date":"2026-04-26T14:45:18","date_gmt":"2026-04-26T18:45:18","guid":{"rendered":"https:\/\/pressbooks.library.torontomu.ca\/visualculture-howtosee\/?post_type=chapter&p=200"},"modified":"2026-05-01T12:47:18","modified_gmt":"2026-05-01T16:47:18","slug":"david-coulson","status":"publish","type":"chapter","link":"https:\/\/pressbooks.library.torontomu.ca\/visualculture-howtosee\/chapter\/david-coulson\/","title":{"raw":"Toward a Relational Practice: Photographing Stories of Health for Patient Voice, David Coulson","rendered":"Toward a Relational Practice: Photographing Stories of Health for Patient Voice, David Coulson"},"content":{"raw":"

Introduction<\/h2>\r\nIn the fall of 2020, I met Michael and Margriet in their Brampton backyard to take their photo. A small social media platform called Patient Voice had just started, and Michael was one of the first to share his story (see fig.1). In 2002, he was diagnosed with a rare genetic disease\u2014so rare that it took over eight years to get a proper diagnosis. Along the way, Margriet, his wife, donated a kidney, but that failed, and Michael continued on dialysis, unable to work for the past 18 years. I sat in that backyard, unplanned, for almost two hours, listening to their harrowing journey, swapping COVID anxieties, and sharing my Brampton upbringing. Throughout, I was grappling with how to translate what they had shared into a photograph, and later, self-consciously, feeling like what I'd made was unremarkable. But what I remember most is an email from Margriet afterward, thanking me for the experience, for taking the time to listen, and being excited that they could share their story with others.\r\n\r\nSince then, I have photographed over 100 stories for Patient Voice<\/a>, an online platform that publishes first-person health narratives accompanied by portraits and images, with the aim of fostering understanding, reducing stigma, and building community around health experiences in Canada (\"About\"). That session with Michael and Margriet taught me something I didn't fully appreciate at the time: that listening was an important part of the process. Along the way, other lessons: that these portraits were much less something \u201cI made\u201d; and that an image doesn\u2019t have to be \u201cremarkable\u201d for it to carry significance. Over the past six years, these realizations have shaped how I approach these sessions, though I have never fully stopped to examine my practice critically.\r\n\r\n \r\n\r\n[caption id=\"attachment_210\" align=\"aligncenter\" width=\"600\"]\"\" Fig 1. Photograph of Michael and Margriet for Patient Voice (Coulson 2020).[\/caption]\r\n\r\nThis project is a chance to do that. Using two recently photographed Patient Voice stories\u2014Justin's, about navigating life after an HIV diagnosis, and Andrew and Sarah's, about Andrew's cancer and Sarah's experience as his caregiver\u2014I created a visual essay<\/a> from the process, using not only the photos, but correspondence, consent forms, and screenshots of the editing work. The paper that follows uses these stories to think through what I would call a relational practice, where listening, collaboration, and reciprocity are an important part of what a photograph carries. Care ethics, with its emphasis on vulnerability and responsibility to others, provides a framework for thinking about what it means to photograph someone whose experience is not your own, and how that encounter might be carried out with more intention. I begin with the critical context around portraiture and representations of illness, then describe Patient Voice and how its stories are made, before turning to my practice itself and, in the discussion, to care ethics as a way of understanding what has taken shape over these six years.\r\n

2. Portraits, Illness, and Representation<\/h2>\r\n

2.1 Portraiture and Photography<\/em><\/h4>\r\nFrom Roman sculpture and Renaissance painting to the photographic studio and the modern-day selfie, the attempt to represent an individual has persisted across centuries and media. As it is conventionally understood, a portrait depicts a person. However, a portrait promises more than just likeness. It is often assumed that a strong portrait reveals something of a person\u2019s \u201cessence\u201d or individuality (Freeland 95\u201396). And so, for Henri-Cartier Bresson: \u201c[T]he most difficult thing for me is the portrait\u2026you have to try and place your camera between a person\u2019s skin and his shirt\u201d (qtd. in Ch\u00e9roux and Jones 57). As a photographer myself, the ambition to reach past appearance toward something true about a person is a familiar one. Yet it is also an assumption about what a portrait can and should do, one that is still actively debated (Freeland 96).\r\n\r\nHistorically, portraiture has also been tied to status and power. Portraits were once only available to elites, commissioned to display wealth or virtue (Berger 109\u201311). While photography made the portrait, as both an experience and object, more accessible, the genre has never shed its entanglements with power and status (Freeland 97). In Ways of Seeing<\/em>, John Berger illustrates how even modern portraits carry traces of older conventions in poses, settings, and props that position subjects within classed and gendered ways of seeing (53, 131\u201332). And photography\u2019s rise added another layer to the expectations of portraiture. From its early uses, photography was taken up as a technology that shows things \u201cas they really are,\u201d lending (visual) authority as truth and evidence (Sontag 5\u20136). Where painting or sculpture sought to capture personality or essence through artistic expression and interpretation, photography appeared to offer direct, transparent access to a subject (Freeland 97, 103).\r\n\r\nWhile an aura of realism still clings to photography, much of the early faith in its objectivity and transparency has faded since the first daguerreotypes. Like painting and drawing, photographs are constructed. As a photographer, I decide which lens to use, where to stand, what to include in the frame, what to crop, and how to edit afterwards. Portraits add their own set of decisions about pose, setting, framing, and expression. None of these choices simply reveals a transparent self. They build a particular version of the person in front of the lens and subtly suggest how viewers should understand them.\r\n\r\nMany of us feel this construction at work when we are photographed. As Barthes describes, \"I feel myself observed by the lens, everything changes: I constitute myself in the process of 'posing,' I instantaneously make another body for myself, I transform myself in advance into an image\" (10). I often see this self-conscious recognition in the people I work with, whether it's a practiced smile, not knowing what to do with their hands, or just visible discomfort. Being photographed is not only about being seen, but also about anticipating how one will be seen and trying to manage it. To have your photo taken is to let another person construct an image that will represent you, a representation that you cannot fully control.\r\n\r\nSontag, perhaps most famously, cast this as photography's aggressive side (\u201cOn Photography\u201d 13). To photograph, she argued, is to appropriate, to enter a relation to the world that feels like knowledge, and therefore like power (\u201cOn Photography\u201d 4). The camera does not simply observe, it \u201cpresumes,\u201d \u201cintrudes\u201d and \u201cdistorts (\u201cOn Photography\u201d 13).\u00a0 It turns parts of the world, including other people\u2019s pain, into objects that can be collected and revisited at will (\u201cRegarding\u201d 95\u201397). Sontag\u2019s most vivid examples come from war and catastrophe, but the questions she raises about consent, control, and vulnerability are important when thinking about photographing others, particularly those who are vulnerable or in sensitive situations. At the same time, the answer cannot simply be to withdraw into what Hariman and Lucaites call a \u201chermeneutics of suspicion,\u201d a stance that treats photographs as merely suspect and domineering (158). For me, Sontag is useful for thinking about the relations of power that structure photographic events. And although she never develops an ethical program or counterpoint, Sontag\u2019s critique is an invitation to ask how practices of looking and making might be ethically shaped\u2014questions that become especially important when we turn to photographs that represent health, illness, and care.\r\n

2.2 Illness and Representation<\/em><\/h4>\r\nHealth and illness are increasingly told through stories. And today, these narratives circulate in memoirs, blogs, film, and social media, shaping how people understand what illness means (Newhouse et al. 130). Frank argues that illness narratives can \u201creclaim voices\u201d that clinical medicine tends to sideline, allowing a person to become a storyteller rather than just a patient (3\u20135). Yet no story exists outside the cultural frames available to tell it; they draw on existing metaphors, myths, and symbols to make experience legible (Bell 7). Sontag shows how dominant metaphors of battle, contamination, and moral failure attach to specific diseases and bodies (particularly cancer and HIV), shaping how illness is perceived and reinforcing stigma even as they offer meaning (\u201cIllness as Metaphor\u201d).\r\n\r\nPhotographs also participate in this meaning-making. They shape what illness looks like, which bodies get shown, and under what conditions suffering becomes publicly visible (Bell 10). Medical photography used the camera to catalogue symptoms and classify bodies (Pardo 167\u2013168). Photojournalistic traditions brought illness into public view, but the images that circulated tended toward spectacle, such as emaciated faces or overcrowded wards, reinforcing an expectation that photographs of illness should shock or disturb (Pardo 169). Squiers used the phrase \"the body at risk\" to catalogue a broad visual convention in which photography depicts bodies in recognizable states of vulnerability, illness, and disorder (9). These conventions, however, offer fewer ways of representing experiences that lack visible features or dramatic markers such as chronic illness, caregiving, and mental health. In other words, illness is not always legible on the body or in visually recognizable ways.\r\n\r\nSome photographers have responded to these representational challenges. Jo Spence turned the camera on herself to challenge how medicine and photography constructed the cancer patient (Bell 15\u201319). Franck, photographing aging subjects over decades, built her practice around building relationships and listening, producing portraits Jordan describes as \"not 'taken' but rather 'made'\" (12). What both recognized, in very different ways, is that the conditions under which a photograph is made are as important as what it comes to mean. This idea is one I keep coming back to in my own work. Images are documents, (constructed) representations, and objects, but also traces of encounters, conversations, invitations and refusals. These are questions of relation and responsibility that I take up more fully later in the paper.\r\n\r\nFor now, this overview of portraiture, photography, and illness representation provides the ground for what follows. In the next section, I outline Patient Voice, a health-storytelling platform, and my involvement as a photographer.\r\n

3. Patient Voice and Health Storytelling<\/h2>\r\nPatient Voice is a Canadian online platform that has published over 150 first-person health stories since it launched in 2020.\u00a0 It describes itself as a social storytelling platform, one that amplifies the voices of patients and caregivers to foster understanding, reduce stigma, and build community (\"About\"). The stories cover a wide range of health experiences, from rare diseases and cancer to mental health, chronic pain, and caregiving, and are sometimes produced in partnership with advocacy groups and disease-specific campaigns.\r\n\r\nEach story typically follows a collaborative process. A writer interviews a participant by phone and drafts a first-person narrative. The participant reviews the draft and can request changes. My involvement varies; sometimes I photograph before the written narrative has been drafted, sometimes after. I go to the participant, usually at home or somewhere connected to their daily life, and make a portrait along with a set of accompanying images.\r\n\r\nWhat gets published is a combination of portrait, imagery\u2014sometimes also provided by the participant\u2014and written narrative (see fig 2.). Like many online platforms, the image is often what draws people in. A viewer scrolling through Instagram or the Patient Voice website encounters the portrait before they read a word. I am somewhat ambivalent about the idea that a (good) portrait reveals a person's essence, but I do think in my work with Patient Voice, there is an attempt to make something that reflects the truth of what they have shared. However, this often does not rely solely on the person, their likeness, or one photo. A lot of the portraits I make are considered \u201cenvironmental portraits,\u201d photographs of a person in a location or scene that reflects who they are or a particular context. In this way, the environment adds to what is being shown or represented, alongside a face. I also make detail and documentary-style images that further try to connect the person to their surroundings or show what their daily life looks like: medication on a counter, a pair of shoes by the door, the photos they keep on their fridge. Taken together, these images create something closer to a composite portrait rather than a single defining image.\r\n\r\n \r\n\r\n[caption id=\"attachment_220\" align=\"aligncenter\" width=\"550\"]\"\" Fig 2. Screenshot of a recent story of Justin shared on the Patient Voice\u2019s Instagram page (Patient Voice 2026).[\/caption]\r\n\r\nAnd then there is the text. The first-person narrative carries what the images might not be able to show in a years-long journey to diagnosis or in the systemic barriers of living with HIV. Here, text and image do different things, but each reshapes how the other is read. Benjamin argued that a caption can direct interpretation and save the image from being consumed passively or interpreted subjectively. (25). In Patient Voice, the first-person narrative functions something like that extended caption, grounding each photograph in a particular life and story.\r\nFinally, Patient Voice calls what it does \"health storytelling,\" and that framing, in contrast to \u201cillness,\u201d is an interesting one. As the previous section discussed, illness carries heavy cultural and visual associations\u2014metaphors of battle and burden, conventions built around crisis and the visibly sick body. Patient Voice tries to position its participants differently, treating them as people living with something rather than defined by it (of course, the name still begins with \u201cPatient,\u201d and that word pulls in its own history of passivity and medical control). The emphasis is on experience and resiliency, not just diagnosis and disease.\r\n\r\nThat framing shapes how the photographs look. Most portraits do not foreground tubes, monitors, or dramatic bodily change. They place people in the middle of ongoing lives: surrounded by children's toys, standing in work clothes, sitting at a kitchen counter. Illness and care are present, but embedded in everyday life rather than set apart from it. Someone unfamiliar with the platform might look at a published portrait and see nothing that signals a health experience at all. And so, as mentioned, the health experience becomes visible through both the narrative and image.\r\n\r\nThis interdependence is where my work sits. Whatever else a Patient Voice portrait might be\u2014a composed portrait, an aesthetic object\u2014it is made to participate in telling someone's story alongside them. That collaborative purpose shapes the work I do, and I want to examine it more closely. In the next section, I trace what happens before, during, and after the photograph is made, to think through how something like a relational practice takes shape.\r\n

4. The Practice<\/h2>\r\nWhat follows is a more reflexive look at my work with Patient Voice. I stay close to two recent stories I photographed. The first is Justin's story<\/a>, about navigating \u201clife and love\u201d after an HIV diagnosis (\u201cJustin\u2019s Story\u201d). The second is about Andrew and Sarah<\/a>; Andrew's stage 4 gastroesophageal cancer and Sarah's experience as his caregiver (\u201cAndrew and Sarah\u2019s Story\u201d). For both, I gathered not only the images but also correspondence, consent documents, first-person narratives, and editing notes. These materials, along with the photographs, form the visual essay that accompanies this paper.\r\n

4.1 Before the Photo<\/h4>\r\nStories arrive at Patient Voice in different ways. In the early days, the platform had to seek people out. Now, participants often approach us wanting to share their experience. Either way, by the time I am involved, some key decisions have already been made. Someone has agreed to speak in public about their health experience. They have read and signed a consent form that explains how their story and images may be used, that participation is voluntary, and that they may withdraw at any time. They know there will be a portrait, and that it will live online alongside their words.\r\n\r\nFrom there, my part usually begins with an email. I\u2019m copied on a thread, and we find a time and place that works for them. Most often, that ends up being their home, sometimes a park or a neighbourhood spot that means something to them. Every so often, someone will ask what they should wear, a subtle sign that they know the camera will fix them in a particular way for an audience. I usually say to wear whatever they feel comfortable in, and whatever fits the version of their life they want to show.\r\n\r\nWith Andrew and Sarah, even getting to that starting point took time. Andrew was in the middle of chemotherapy when I was first connected with them, and our initial attempts to schedule a visit kept falling through. A few tentative dates were set and then cancelled when he felt too unwell. After a while, I found myself texting more with Sarah than emailing, telling her that we could wait, that there was no deadline, and that we could make it work whenever Andrew had a stretch of good days, and that I could be flexible (see fig. 3). At one point, she apologized and suggested they could just send personal photos instead. I remember feeling a mix of wanting to make things easier for them and wanting them to get a part of the experience. I kept the door open, and eventually, on a Saturday afternoon when Andrew was feeling a bit stronger, we found a time to take some photos.\r\n\r\n \r\n\r\n[caption id=\"attachment_225\" align=\"aligncenter\" width=\"247\"]\"\" Fig 3. Screenshot of text exchange with Sarah, shared with permission (Coulson 2026).[\/caption]\r\n

4.2 Making the Photo<\/h4>\r\nLetting someone you don\u2019t know into your home to take your picture can feel uneasy. Walking into someone else\u2019s home to make their portrait can feel that way too. There is usually a small jolt of nervousness when I knock on the door. We have emailed, maybe texted, but we still don\u2019t know each other, and now we are about to make images that will travel beyond this room.\r\n\r\nWhen I schedule a session, I ask for at least an hour if possible. It doesn\u2019t take an hour to make a photo. But what I want is time to sit, to listen, to let the initial awkwardness subside. Listening has become as much a part of the craft as choosing the right lens. It gives me a sense of the story's emotional tone and lets me start noticing the setting and details that arise. But listening is also part of what the session means for the participant. Thinking back to Michael and Margriet, and many sessions since, I am struck by how often people say that having space to talk and be heard mattered as much as the pictures. I try to ask not only about what happened but also how things feel now, what they hope someone reading their story might take away, and I share a little bit about my own life, too.\r\n\r\nWhen it feels right to start photographing, I ask how they would like to be seen and whether there is anything they want included. This sometimes catches people off guard. There is an expectation, I think, that the photographer will simply decide which angle, setting or pose is best. I do draw on experience, and I will suggest things. But I want to leave room for them to shape the image, and it can matter for what the portrait communicates. Many Patient Voice images show people looking well, smiling, at ease, which can counter the visual conventions that associate illness only with visible suffering. But for some participants, that representation does not feel honest. Sometimes the weight of an experience is what needs to come through, and a more subdued expression is part of telling the truth of that moment or story. Their input helps me read where we are.\r\n\r\nWith Justin, the apartment itself felt central. Mirrors on the walls, a fish tank bubbling in the corner, stuffed animals and dolls, he told me, were sources of comfort. He wanted them in the frame, and at one point, he closed his eyes, and that image carried something we had been talking about\u2014a kind of unapologetic ease he had fought hard to achieve after his HIV diagnosis (see fig. 2). With Andrew, baseball was a thread running through much of his story. He talked about his love of the Red Sox and his hope to one day watch a game at Fenway Park again. In one image (see fig. 4), Andrew is out of focus, hand mid-gesture, while the wall behind him is sharp, with a Fenway Park tapestry and memorabilia filling the frame. Despite not being able to clearly see his face, the photo still shows Andrew through the texture of his space.\r\n\r\nSometimes the work stretches a little beyond what will appear on the site. People ask if they can have a photograph of their family or a loved one just for themselves, something that may never be published. If there is time and they want it, I say yes. Not every session has the luxury of an hour or more, but I try to make whatever time we have feel less like a transaction and more like a meaningful exchange.\r\n\r\n \r\n\r\n[caption id=\"attachment_229\" align=\"aligncenter\" width=\"550\"]\"\" Fig 4. Photo of Andrew and his baseball memorabilia, for Patient Voice (Coulson 2026).[\/caption]\r\n

4.3 After the Photo<\/h4>\r\nIn a typical Patient Voice session with someone like Justin or with Andrew and Sarah, I might leave with 300-400 photos taken (the excesses of digital photography). Later, at my desk, I have to decide what counts as a \u201cgood\u201d picture, which expressions feel honest, which images best capture how the conversation felt, and what to leave out. From a few hundred, I usually send Patient Voice a selection of around twenty\u2011five. Participants can ask to review the images before publication if they want, and some do, which adds another layer of input. But the final arrangement\u2014what goes where on the page, which image leads the story on Instagram\u2014is an editorial decision I am not part of. Once the story goes live, I send them the set of photographs I shared with Patient Voice, along with any extra images I took just for them.\r\n\r\n[caption id=\"attachment_231\" align=\"aligncenter\" width=\"750\"]\"\" Fig. 5. Email correspondence with Justin following the photo session, in which he asks for help photographing his harm reduction event, alongside an image from that event he posted on his social media. Shared with permission (Coulson 2026).[\/caption]\r\n\r\nSometimes the connection extends beyond the published story. Justin emailed afterward to thank me for the photos and ask whether I would be interested in photographing a harm reduction event he was organizing (see fig. 5). I said yes, and ended up spending an evening documenting the event; something entirely outside the scope of Patient Voice, but which felt like a natural continuation of the relationship we had built during the session. With Andrew and Sarah, the published story included a link to their GoFundMe, which helped support Andrew's ongoing treatment.\r\n\r\nOnce a story is published, the images and narrative circulate through Patient Voice\u2019s channels and, just as importantly, through participants\u2019 own networks. Under Justin\u2019s story on Instagram, someone writes: \u201c[Justin] your honesty about fear, misinformation, stigma, and what it actually means to live well with HIV matters more than you know. Stories like yours save people from feeling alone\u201d (see fig. 6). What strikes me about this comment is that it is not a response to a photograph or a piece of writing in any critical sense. It is one person telling another that their willingness to be seen and to speak honestly about HIV is important for them. Whatever role the photos and narrative played in making that connection possible, the exchange that follows belongs to the people involved. Their comments and shares move the work into contexts none of us (myself, Justin or Patient Voice) can anticipate, and in doing so, the image and story become part of a wider, ongoing conversation about HIV, stigma, and what it means to feel recognized by someone else's experience.\r\n\r\n \r\n\r\n[caption id=\"attachment_233\" align=\"aligncenter\" width=\"450\"]\"\" Fig. 6. A comment on Justin's Patient Voice story shared on Instagram (Coulson 2026).[\/caption]\r\n

5. Discussion<\/h2>\r\nCare ethics, as Koggel and Orme summarize it, \"emphasizes the importance of context, interdependence, relationships, and responsibilities to concrete others\" (1). It is a way of thinking that starts from particular relationships and the recognition that people depend on one another. Laugier argues that the first tenet of care ethics is that \"the human is vulnerable\" (219). That vulnerability is not a special condition affecting only certain people. It is ordinary, shared, and the ethical question is how we respond to it when we encounter it in someone else (Laugier 219). Sontag, as I discussed earlier, saw vulnerability as a site where photography is predatory and where the camera risks turning a person into an object for consumption or aestheticization. Care ethics begins from the same awareness of vulnerability but moves in a different direction. Rather than treating the encounter as inherently extractive, it asks what it would mean to be present within it with attention and responsibility.\r\n\r\nI find this framework useful not because it validates what I do, but because it gives me a way to think about dimensions of the work that are hard to describe in purely photographic terms. When I sat with Michael and Margriet in their backyard, or with Justin in his apartment, the listening was not just rapport-building. It was a form of attention to the person in front of me that shaped what I could see, but also what I could offer\u2014respect, patience, the sense that their time and story mattered. When I ask a participant how they want to be photographed, I am trying to make room for their sense of what feels honest and recognizable to them. Laugier defines care as \"a response appropriate to the other, according to circumstance,\" requiring \"a sensibility to the situation and the ability to improvise\" (226).\u00a0 Instead of abandoning the session when Andrew\u2019s chemotherapy kept disrupting our plans, those weeks of texting with Sarah became an exercise in flexibility and empathy that treated their circumstances as something the work had to accommodate, rather than as a reason they could not have the experience at all.\r\n\r\nJordan, in her analysis of Martine Franck's photographic work with aging subjects, describes a practice that resonates with much of this. Franck spoke of the camera as a \u201c barrier that one is constantly breaking down, so as to get closer to the subject\u201d (qtd. in Jordan 11). What Jordan argues is that Franck's sustained attentiveness to the people she photographed was not incidental to the images but constitutive of them. Her photographs were \"at once a residue, and a promoter, of the relationality that is her true goal\" (13). In other words, the image is not the endpoint; the relationship is. This resonates strongly with what I am trying to do with my work at Patient Voice, as described in the previous section.\r\n\r\nI do want to be careful here. The asymmetry between photographer and subject does not dissolve merely because the process is collaborative. I still hold the camera. I still choose the frame, the angle, the moment. The first-person narrative that accompanies the portrait was written by someone who interviewed the participant by phone, and therefore, it is a translation of their voice, not their voice itself. The participant reviews and approves, but the process's structure ensures that multiple intermediaries shape how their story reaches the public. However, care ethics, as Laugier further points out, is a practice, \"not 'only' a moral feeling or disposition\" (226). Reading Patient Voice through this lens, my experience suggests a practice that has gradually shifted from merely photographic to relational. It draws attention to the value of time spent talking in a kitchen, of postponing when someone is too unwell, of inviting and honouring refusals of particular images, and it turns those decisions into things I can try to make more intentional next time.\r\n\r\nWhat gives me some confidence that this orientation matters is what happens after the photographs are made. The comment on Justin's post from someone living with HIV, Andrew and Sarah's GoFundMe reaching people through their story, Justin asking me to come photograph his harm reduction event; these are small outcomes, but they suggest that photographs made through a process of attentiveness and reciprocity can participate in something beyond representation\u2014in the kind of community Patient Voice has set out to build. Not community as an abstraction, but as something that forms when people encounter each other's experiences and respond.\r\n

6. Conclusion<\/h2>\r\nThis paper has been an attempt to articulate a photographic practice from the inside. It has reflected on two Patient Voice stories, the encounters that produced them, and the frameworks that help me understand what I was doing and why it mattered.\r\n\r\nThere are obvious limitations. This paper is one photographer's account. Justin, Andrew, and Sarah were not asked to reflect on their experiences of the process. Their perspectives would complicate and probably correct parts of what I have written here, and a fuller version of this project could include them. I have also not addressed in any sustained way what happens when these images reach the public. For example, how viewers interpret them, what gets lost or transformed, and whether a relational approach is even legible in the finished image.\r\n\r\nThere is something worth pausing on, however, before closing. We live in a time saturated with images. We photograph ourselves constantly and are photographed in return, often without much thought. In some ways, the anxieties Sontag raised about photography's acquisitive power have become so ordinary that they barely register anymore. And yet, not everyone has a photographer knock on their door and ask to make their portrait. Steve McCurry once described his camera as a passport. As photographers, with a camera in hand, we sometimes get access to people, places and situations you would not otherwise reach. I think about that in relation to the over one hundred people who have let me into their homes for an hour or two to make a photo.\r\n\r\nAnd so, the people I have met through Patient Voice and the stories they have shared are not things I take for granted. They have shaped how I understand what photography can be. They have shaped me. If this paper accomplishes anything, I hope it suggests that the encounter matters as much as the image, and that how we make images of and with others deserves the same kind of careful examination that we give to what those images represent or mean.\r\n\r\n \r\n\r\n
\r\n\r\n \r\n\r\nThanks to Andrew, Sarah, and Justin for letting me share our experience, correspondence and images as part of this project.\r\n\r\n \r\n\r\n[caption id=\"attachment_238\" align=\"aligncenter\" width=\"650\"]\"\" Sarah and Andrew (Coulson 2026).[\/caption]\r\n\r\n \r\n\r\n[caption id=\"attachment_228\" align=\"aligncenter\" width=\"650\"]\"\" Justin (Coulson 2026).[\/caption]\r\n\r\n
\r\n\r\n

Work Cited<\/h5>\r\n\u201cAbout.\u201d Patient Voice, https:\/\/www.patientvoice.io\/about<\/a>. Accessed April 3, 2026.\r\n\r\nBarthes, Roland. Camera Lucida: Reflections On Photography<\/em>. Hill and Wang, 2010.\r\n\r\nBell, Susan E. \"Photo images: Jo Spence\u2019s narratives of living with illness.\" Health: 6.1 (2002): 5-30. <\/span>https:\/\/doi.org\/10.1177\/136345930200600102<\/a>\r\n\r\nBenjamin, Walter. \"A short history of photography.\" Screen<\/em>, vol. 13, no. 1, 1972, pp. 5\u201326, <\/span>https:\/\/doi.org\/10.1093\/screen\/13.1.5<\/a>\r\n\r\nBerger, John. Ways of Seeing<\/em>. Penguin UK, 2008.\r\n\r\nCh\u00e9roux, Cl\u00e9ment and Julie Jones, editors. Henri Cartier-Bresson: Interviews and <\/em>Conversations 1951\u20131998<\/em>. Aperture, 2017.<\/span>\r\n\r\nCoulson, David. Photograph of Michael and Margriet. 1 Oct. 2020. Author\u2019s personal collection.\r\n\r\n\u2013\u2013\u2013. Photograph of Justin. 21 Jan. 2026. Author\u2019s personal collection.\r\n\r\n\u2013\u2013\u2013. Photograph of Andrew and his baseball memorabilia. 21 Mar. 2026. Author\u2019s personal collection.\r\n\r\n\u2013\u2013\u2013. Photograph of Andrew and Sarah. 21 Mar. 2026. Author\u2019s personal collection.\r\n\r\n\u2013\u2013\u2013. Screenshot of text exchange with Sarah. 20 Apr. 2026.\r\n\r\n\u2013\u2013\u2013. Screenshot of email correspondence with Justin. 20 Apr. 2026.\r\n\r\n\u2013\u2013\u2013. Screenshot a comment on Justin's Patient Voice story shared on Instagram. 20 Apr. 2026.\r\n\r\nFrank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics<\/em>. University of Chicago Press, 1995.\r\n\r\nFreeland, Cynthia. \"Portraits in painting and photography.\" Philosophical Studies<\/em> 135.1 (2007):\u00a095-109. https:\/\/doi.org\/10.1007\/s11098-007-9099-7<\/a>\r\n\r\nHariman, Robert, and John Louis Lucaites. \"Seeing the public image anew: Photography exhibitions and civic spectatorship.\" The Routledge companion to photography theory<\/em>, edited by Mark Durden and Jane Tormey, Routledge, 2019, pp. 157\u2013175, https:\/\/doi.org\/10.4324\/9781315727998<\/a>\r\n\r\nJordan, Shirley. \u201cAgeing and Care in the Visual Field: The Photography of Martine Franck.\u201d Contemporary Narratives of Ageing, Illness, Care<\/em>, edited by Katsura Sako and Sarah Falcus, Taylor & Francis Group, 2021, https:\/\/doi.org\/10.4324\/9781003058618<\/a>\r\n\r\nKoggel, Christine M., and Joan Orme, editors. Care Ethics: New Theories and Applications<\/em>. Routledge, 2015.\r\n\r\nLaugier, Sandra. \"The Ethics of Care as a Politics of the Ordinary.\" New Literary History<\/em> 46.2 (2015): 217-240.\r\n\r\nNewhouse, Nikki et al. \"Pain and the Internet: Transforming the Experience?\" Painscapes: Communicating Pain<\/em>, edited by EJ Gonzalez-Polledo and Jen Tarr, Palgrave Macmillan, 2017, pp. 129\u2013155, https:\/\/doi.org\/10.1057\/978-1-349- 95272-4<\/a>\r\n\r\nPardo, Rebeca. \"Photography and Mental Illness: Feeding or Combating the Stigma of Invisible\u00a0Pain Online and Offline\" Painscapes: Communicating Pain<\/em>, edited by EJ Gonzalez-Polledo, and Jen Tarr, Palgrave Macmillan, 2017, pp. 129\u2013155, https:\/\/doi.org\/10.1057\/978-1-349- 95272-4<\/a>\r\n\r\nSontag, Susan. On Photography<\/em>. 1977. Picador, 2025.\r\n\r\n\u2013\u2013\u2013. Illness as Metaphor and AIDS and Its Metaphors<\/em>. Anchor Books, 1990.\r\n\r\n\u2013\u2013\u2013. Regarding the Pain of Others<\/em>. Picador, 2003.\r\n\r\nSquiers, Carol. The Body at Risk: Photography of Disorder, Illness, and Healing<\/em>. University of California Press, 2005.\r\n\r\n\u201cSwinging for the fences: Andrew & Sarah\u2019s story.\u201d Patient Voice, 13 April 2026, https:\/\/www.patientvoice.io\/shorts\/swinging-for-the-fences- andrew-sarahs-story<\/a>. Accessed 14 April 2026.\r\n\r\n\u201cUnfiltered, unapologetic, and undetectable: Justin\u2019s story.\u201d Patient Voice, 26\u00a0 Jan 2026, https:\/\/www.patientvoice.io\/shorts\/unfiltered-unapologetic-and-undetectable- justins-story<\/a>. Accessed 7 April 2026.\r\n\r\n \r\n\r\n ","rendered":"

Introduction<\/h2>\n

In the fall of 2020, I met Michael and Margriet in their Brampton backyard to take their photo. A small social media platform called Patient Voice had just started, and Michael was one of the first to share his story (see fig.1). In 2002, he was diagnosed with a rare genetic disease\u2014so rare that it took over eight years to get a proper diagnosis. Along the way, Margriet, his wife, donated a kidney, but that failed, and Michael continued on dialysis, unable to work for the past 18 years. I sat in that backyard, unplanned, for almost two hours, listening to their harrowing journey, swapping COVID anxieties, and sharing my Brampton upbringing. Throughout, I was grappling with how to translate what they had shared into a photograph, and later, self-consciously, feeling like what I’d made was unremarkable. But what I remember most is an email from Margriet afterward, thanking me for the experience, for taking the time to listen, and being excited that they could share their story with others.<\/p>\n

Since then, I have photographed over 100 stories for Patient Voice<\/a>, an online platform that publishes first-person health narratives accompanied by portraits and images, with the aim of fostering understanding, reducing stigma, and building community around health experiences in Canada (“About”). That session with Michael and Margriet taught me something I didn’t fully appreciate at the time: that listening was an important part of the process. Along the way, other lessons: that these portraits were much less something \u201cI made\u201d; and that an image doesn\u2019t have to be \u201cremarkable\u201d for it to carry significance. Over the past six years, these realizations have shaped how I approach these sessions, though I have never fully stopped to examine my practice critically.<\/p>\n

 <\/p>\n

\"\"
Fig 1. Photograph of Michael and Margriet for Patient Voice (Coulson 2020).<\/figcaption><\/figure>\n

This project is a chance to do that. Using two recently photographed Patient Voice stories\u2014Justin’s, about navigating life after an HIV diagnosis, and Andrew and Sarah’s, about Andrew’s cancer and Sarah’s experience as his caregiver\u2014I created a visual essay<\/a> from the process, using not only the photos, but correspondence, consent forms, and screenshots of the editing work. The paper that follows uses these stories to think through what I would call a relational practice, where listening, collaboration, and reciprocity are an important part of what a photograph carries. Care ethics, with its emphasis on vulnerability and responsibility to others, provides a framework for thinking about what it means to photograph someone whose experience is not your own, and how that encounter might be carried out with more intention. I begin with the critical context around portraiture and representations of illness, then describe Patient Voice and how its stories are made, before turning to my practice itself and, in the discussion, to care ethics as a way of understanding what has taken shape over these six years.<\/p>\n

2. Portraits, Illness, and Representation<\/h2>\n

2.1 Portraiture and Photography<\/em><\/h4>\n

From Roman sculpture and Renaissance painting to the photographic studio and the modern-day selfie, the attempt to represent an individual has persisted across centuries and media. As it is conventionally understood, a portrait depicts a person. However, a portrait promises more than just likeness. It is often assumed that a strong portrait reveals something of a person\u2019s \u201cessence\u201d or individuality (Freeland 95\u201396). And so, for Henri-Cartier Bresson: \u201c[T]he most difficult thing for me is the portrait\u2026you have to try and place your camera between a person\u2019s skin and his shirt\u201d (qtd. in Ch\u00e9roux and Jones 57). As a photographer myself, the ambition to reach past appearance toward something true about a person is a familiar one. Yet it is also an assumption about what a portrait can and should do, one that is still actively debated (Freeland 96).<\/p>\n

Historically, portraiture has also been tied to status and power. Portraits were once only available to elites, commissioned to display wealth or virtue (Berger 109\u201311). While photography made the portrait, as both an experience and object, more accessible, the genre has never shed its entanglements with power and status (Freeland 97). In Ways of Seeing<\/em>, John Berger illustrates how even modern portraits carry traces of older conventions in poses, settings, and props that position subjects within classed and gendered ways of seeing (53, 131\u201332). And photography\u2019s rise added another layer to the expectations of portraiture. From its early uses, photography was taken up as a technology that shows things \u201cas they really are,\u201d lending (visual) authority as truth and evidence (Sontag 5\u20136). Where painting or sculpture sought to capture personality or essence through artistic expression and interpretation, photography appeared to offer direct, transparent access to a subject (Freeland 97, 103).<\/p>\n

While an aura of realism still clings to photography, much of the early faith in its objectivity and transparency has faded since the first daguerreotypes. Like painting and drawing, photographs are constructed. As a photographer, I decide which lens to use, where to stand, what to include in the frame, what to crop, and how to edit afterwards. Portraits add their own set of decisions about pose, setting, framing, and expression. None of these choices simply reveals a transparent self. They build a particular version of the person in front of the lens and subtly suggest how viewers should understand them.<\/p>\n

Many of us feel this construction at work when we are photographed. As Barthes describes, “I feel myself observed by the lens, everything changes: I constitute myself in the process of ‘posing,’ I instantaneously make another body for myself, I transform myself in advance into an image” (10). I often see this self-conscious recognition in the people I work with, whether it’s a practiced smile, not knowing what to do with their hands, or just visible discomfort. Being photographed is not only about being seen, but also about anticipating how one will be seen and trying to manage it. To have your photo taken is to let another person construct an image that will represent you, a representation that you cannot fully control.<\/p>\n

Sontag, perhaps most famously, cast this as photography’s aggressive side (\u201cOn Photography\u201d 13). To photograph, she argued, is to appropriate, to enter a relation to the world that feels like knowledge, and therefore like power (\u201cOn Photography\u201d 4). The camera does not simply observe, it \u201cpresumes,\u201d \u201cintrudes\u201d and \u201cdistorts (\u201cOn Photography\u201d 13).\u00a0 It turns parts of the world, including other people\u2019s pain, into objects that can be collected and revisited at will (\u201cRegarding\u201d 95\u201397). Sontag\u2019s most vivid examples come from war and catastrophe, but the questions she raises about consent, control, and vulnerability are important when thinking about photographing others, particularly those who are vulnerable or in sensitive situations. At the same time, the answer cannot simply be to withdraw into what Hariman and Lucaites call a \u201chermeneutics of suspicion,\u201d a stance that treats photographs as merely suspect and domineering (158). For me, Sontag is useful for thinking about the relations of power that structure photographic events. And although she never develops an ethical program or counterpoint, Sontag\u2019s critique is an invitation to ask how practices of looking and making might be ethically shaped\u2014questions that become especially important when we turn to photographs that represent health, illness, and care.<\/p>\n

2.2 Illness and Representation<\/em><\/h4>\n

Health and illness are increasingly told through stories. And today, these narratives circulate in memoirs, blogs, film, and social media, shaping how people understand what illness means (Newhouse et al. 130). Frank argues that illness narratives can \u201creclaim voices\u201d that clinical medicine tends to sideline, allowing a person to become a storyteller rather than just a patient (3\u20135). Yet no story exists outside the cultural frames available to tell it; they draw on existing metaphors, myths, and symbols to make experience legible (Bell 7). Sontag shows how dominant metaphors of battle, contamination, and moral failure attach to specific diseases and bodies (particularly cancer and HIV), shaping how illness is perceived and reinforcing stigma even as they offer meaning (\u201cIllness as Metaphor\u201d).<\/p>\n

Photographs also participate in this meaning-making. They shape what illness looks like, which bodies get shown, and under what conditions suffering becomes publicly visible (Bell 10). Medical photography used the camera to catalogue symptoms and classify bodies (Pardo 167\u2013168). Photojournalistic traditions brought illness into public view, but the images that circulated tended toward spectacle, such as emaciated faces or overcrowded wards, reinforcing an expectation that photographs of illness should shock or disturb (Pardo 169). Squiers used the phrase “the body at risk” to catalogue a broad visual convention in which photography depicts bodies in recognizable states of vulnerability, illness, and disorder (9). These conventions, however, offer fewer ways of representing experiences that lack visible features or dramatic markers such as chronic illness, caregiving, and mental health. In other words, illness is not always legible on the body or in visually recognizable ways.<\/p>\n

Some photographers have responded to these representational challenges. Jo Spence turned the camera on herself to challenge how medicine and photography constructed the cancer patient (Bell 15\u201319). Franck, photographing aging subjects over decades, built her practice around building relationships and listening, producing portraits Jordan describes as “not ‘taken’ but rather ‘made'” (12). What both recognized, in very different ways, is that the conditions under which a photograph is made are as important as what it comes to mean. This idea is one I keep coming back to in my own work. Images are documents, (constructed) representations, and objects, but also traces of encounters, conversations, invitations and refusals. These are questions of relation and responsibility that I take up more fully later in the paper.<\/p>\n

For now, this overview of portraiture, photography, and illness representation provides the ground for what follows. In the next section, I outline Patient Voice, a health-storytelling platform, and my involvement as a photographer.<\/p>\n

3. Patient Voice and Health Storytelling<\/h2>\n

Patient Voice is a Canadian online platform that has published over 150 first-person health stories since it launched in 2020.\u00a0 It describes itself as a social storytelling platform, one that amplifies the voices of patients and caregivers to foster understanding, reduce stigma, and build community (“About”). The stories cover a wide range of health experiences, from rare diseases and cancer to mental health, chronic pain, and caregiving, and are sometimes produced in partnership with advocacy groups and disease-specific campaigns.<\/p>\n

Each story typically follows a collaborative process. A writer interviews a participant by phone and drafts a first-person narrative. The participant reviews the draft and can request changes. My involvement varies; sometimes I photograph before the written narrative has been drafted, sometimes after. I go to the participant, usually at home or somewhere connected to their daily life, and make a portrait along with a set of accompanying images.<\/p>\n

What gets published is a combination of portrait, imagery\u2014sometimes also provided by the participant\u2014and written narrative (see fig 2.). Like many online platforms, the image is often what draws people in. A viewer scrolling through Instagram or the Patient Voice website encounters the portrait before they read a word. I am somewhat ambivalent about the idea that a (good) portrait reveals a person’s essence, but I do think in my work with Patient Voice, there is an attempt to make something that reflects the truth of what they have shared. However, this often does not rely solely on the person, their likeness, or one photo. A lot of the portraits I make are considered \u201cenvironmental portraits,\u201d photographs of a person in a location or scene that reflects who they are or a particular context. In this way, the environment adds to what is being shown or represented, alongside a face. I also make detail and documentary-style images that further try to connect the person to their surroundings or show what their daily life looks like: medication on a counter, a pair of shoes by the door, the photos they keep on their fridge. Taken together, these images create something closer to a composite portrait rather than a single defining image.<\/p>\n

 <\/p>\n

\"\"
Fig 2. Screenshot of a recent story of Justin shared on the Patient Voice\u2019s Instagram page (Patient Voice 2026).<\/figcaption><\/figure>\n

And then there is the text. The first-person narrative carries what the images might not be able to show in a years-long journey to diagnosis or in the systemic barriers of living with HIV. Here, text and image do different things, but each reshapes how the other is read. Benjamin argued that a caption can direct interpretation and save the image from being consumed passively or interpreted subjectively. (25). In Patient Voice, the first-person narrative functions something like that extended caption, grounding each photograph in a particular life and story.
\nFinally, Patient Voice calls what it does “health storytelling,” and that framing, in contrast to \u201cillness,\u201d is an interesting one. As the previous section discussed, illness carries heavy cultural and visual associations\u2014metaphors of battle and burden, conventions built around crisis and the visibly sick body. Patient Voice tries to position its participants differently, treating them as people living with something rather than defined by it (of course, the name still begins with \u201cPatient,\u201d and that word pulls in its own history of passivity and medical control). The emphasis is on experience and resiliency, not just diagnosis and disease.<\/p>\n

That framing shapes how the photographs look. Most portraits do not foreground tubes, monitors, or dramatic bodily change. They place people in the middle of ongoing lives: surrounded by children’s toys, standing in work clothes, sitting at a kitchen counter. Illness and care are present, but embedded in everyday life rather than set apart from it. Someone unfamiliar with the platform might look at a published portrait and see nothing that signals a health experience at all. And so, as mentioned, the health experience becomes visible through both the narrative and image.<\/p>\n

This interdependence is where my work sits. Whatever else a Patient Voice portrait might be\u2014a composed portrait, an aesthetic object\u2014it is made to participate in telling someone’s story alongside them. That collaborative purpose shapes the work I do, and I want to examine it more closely. In the next section, I trace what happens before, during, and after the photograph is made, to think through how something like a relational practice takes shape.<\/p>\n

4. The Practice<\/h2>\n

What follows is a more reflexive look at my work with Patient Voice. I stay close to two recent stories I photographed. The first is Justin’s story<\/a>, about navigating \u201clife and love\u201d after an HIV diagnosis (\u201cJustin\u2019s Story\u201d). The second is about Andrew and Sarah<\/a>; Andrew’s stage 4 gastroesophageal cancer and Sarah’s experience as his caregiver (\u201cAndrew and Sarah\u2019s Story\u201d). For both, I gathered not only the images but also correspondence, consent documents, first-person narratives, and editing notes. These materials, along with the photographs, form the visual essay that accompanies this paper.<\/p>\n

4.1 Before the Photo<\/h4>\n

Stories arrive at Patient Voice in different ways. In the early days, the platform had to seek people out. Now, participants often approach us wanting to share their experience. Either way, by the time I am involved, some key decisions have already been made. Someone has agreed to speak in public about their health experience. They have read and signed a consent form that explains how their story and images may be used, that participation is voluntary, and that they may withdraw at any time. They know there will be a portrait, and that it will live online alongside their words.<\/p>\n

From there, my part usually begins with an email. I\u2019m copied on a thread, and we find a time and place that works for them. Most often, that ends up being their home, sometimes a park or a neighbourhood spot that means something to them. Every so often, someone will ask what they should wear, a subtle sign that they know the camera will fix them in a particular way for an audience. I usually say to wear whatever they feel comfortable in, and whatever fits the version of their life they want to show.<\/p>\n

With Andrew and Sarah, even getting to that starting point took time. Andrew was in the middle of chemotherapy when I was first connected with them, and our initial attempts to schedule a visit kept falling through. A few tentative dates were set and then cancelled when he felt too unwell. After a while, I found myself texting more with Sarah than emailing, telling her that we could wait, that there was no deadline, and that we could make it work whenever Andrew had a stretch of good days, and that I could be flexible (see fig. 3). At one point, she apologized and suggested they could just send personal photos instead. I remember feeling a mix of wanting to make things easier for them and wanting them to get a part of the experience. I kept the door open, and eventually, on a Saturday afternoon when Andrew was feeling a bit stronger, we found a time to take some photos.<\/p>\n

 <\/p>\n

\"\"
Fig 3. Screenshot of text exchange with Sarah, shared with permission (Coulson 2026).<\/figcaption><\/figure>\n

4.2 Making the Photo<\/h4>\n

Letting someone you don\u2019t know into your home to take your picture can feel uneasy. Walking into someone else\u2019s home to make their portrait can feel that way too. There is usually a small jolt of nervousness when I knock on the door. We have emailed, maybe texted, but we still don\u2019t know each other, and now we are about to make images that will travel beyond this room.<\/p>\n

When I schedule a session, I ask for at least an hour if possible. It doesn\u2019t take an hour to make a photo. But what I want is time to sit, to listen, to let the initial awkwardness subside. Listening has become as much a part of the craft as choosing the right lens. It gives me a sense of the story’s emotional tone and lets me start noticing the setting and details that arise. But listening is also part of what the session means for the participant. Thinking back to Michael and Margriet, and many sessions since, I am struck by how often people say that having space to talk and be heard mattered as much as the pictures. I try to ask not only about what happened but also how things feel now, what they hope someone reading their story might take away, and I share a little bit about my own life, too.<\/p>\n

When it feels right to start photographing, I ask how they would like to be seen and whether there is anything they want included. This sometimes catches people off guard. There is an expectation, I think, that the photographer will simply decide which angle, setting or pose is best. I do draw on experience, and I will suggest things. But I want to leave room for them to shape the image, and it can matter for what the portrait communicates. Many Patient Voice images show people looking well, smiling, at ease, which can counter the visual conventions that associate illness only with visible suffering. But for some participants, that representation does not feel honest. Sometimes the weight of an experience is what needs to come through, and a more subdued expression is part of telling the truth of that moment or story. Their input helps me read where we are.<\/p>\n

With Justin, the apartment itself felt central. Mirrors on the walls, a fish tank bubbling in the corner, stuffed animals and dolls, he told me, were sources of comfort. He wanted them in the frame, and at one point, he closed his eyes, and that image carried something we had been talking about\u2014a kind of unapologetic ease he had fought hard to achieve after his HIV diagnosis (see fig. 2). With Andrew, baseball was a thread running through much of his story. He talked about his love of the Red Sox and his hope to one day watch a game at Fenway Park again. In one image (see fig. 4), Andrew is out of focus, hand mid-gesture, while the wall behind him is sharp, with a Fenway Park tapestry and memorabilia filling the frame. Despite not being able to clearly see his face, the photo still shows Andrew through the texture of his space.<\/p>\n

Sometimes the work stretches a little beyond what will appear on the site. People ask if they can have a photograph of their family or a loved one just for themselves, something that may never be published. If there is time and they want it, I say yes. Not every session has the luxury of an hour or more, but I try to make whatever time we have feel less like a transaction and more like a meaningful exchange.<\/p>\n

 <\/p>\n

\"\"
Fig 4. Photo of Andrew and his baseball memorabilia, for Patient Voice (Coulson 2026).<\/figcaption><\/figure>\n

4.3 After the Photo<\/h4>\n

In a typical Patient Voice session with someone like Justin or with Andrew and Sarah, I might leave with 300-400 photos taken (the excesses of digital photography). Later, at my desk, I have to decide what counts as a \u201cgood\u201d picture, which expressions feel honest, which images best capture how the conversation felt, and what to leave out. From a few hundred, I usually send Patient Voice a selection of around twenty\u2011five. Participants can ask to review the images before publication if they want, and some do, which adds another layer of input. But the final arrangement\u2014what goes where on the page, which image leads the story on Instagram\u2014is an editorial decision I am not part of. Once the story goes live, I send them the set of photographs I shared with Patient Voice, along with any extra images I took just for them.<\/p>\n

\"\"
Fig. 5. Email correspondence with Justin following the photo session, in which he asks for help photographing his harm reduction event, alongside an image from that event he posted on his social media. Shared with permission (Coulson 2026).<\/figcaption><\/figure>\n

Sometimes the connection extends beyond the published story. Justin emailed afterward to thank me for the photos and ask whether I would be interested in photographing a harm reduction event he was organizing (see fig. 5). I said yes, and ended up spending an evening documenting the event; something entirely outside the scope of Patient Voice, but which felt like a natural continuation of the relationship we had built during the session. With Andrew and Sarah, the published story included a link to their GoFundMe, which helped support Andrew’s ongoing treatment.<\/p>\n

Once a story is published, the images and narrative circulate through Patient Voice\u2019s channels and, just as importantly, through participants\u2019 own networks. Under Justin\u2019s story on Instagram, someone writes: \u201c[Justin] your honesty about fear, misinformation, stigma, and what it actually means to live well with HIV matters more than you know. Stories like yours save people from feeling alone\u201d (see fig. 6). What strikes me about this comment is that it is not a response to a photograph or a piece of writing in any critical sense. It is one person telling another that their willingness to be seen and to speak honestly about HIV is important for them. Whatever role the photos and narrative played in making that connection possible, the exchange that follows belongs to the people involved. Their comments and shares move the work into contexts none of us (myself, Justin or Patient Voice) can anticipate, and in doing so, the image and story become part of a wider, ongoing conversation about HIV, stigma, and what it means to feel recognized by someone else’s experience.<\/p>\n

 <\/p>\n

\"\"
Fig. 6. A comment on Justin’s Patient Voice story shared on Instagram (Coulson 2026).<\/figcaption><\/figure>\n

5. Discussion<\/h2>\n

Care ethics, as Koggel and Orme summarize it, “emphasizes the importance of context, interdependence, relationships, and responsibilities to concrete others” (1). It is a way of thinking that starts from particular relationships and the recognition that people depend on one another. Laugier argues that the first tenet of care ethics is that “the human is vulnerable” (219). That vulnerability is not a special condition affecting only certain people. It is ordinary, shared, and the ethical question is how we respond to it when we encounter it in someone else (Laugier 219). Sontag, as I discussed earlier, saw vulnerability as a site where photography is predatory and where the camera risks turning a person into an object for consumption or aestheticization. Care ethics begins from the same awareness of vulnerability but moves in a different direction. Rather than treating the encounter as inherently extractive, it asks what it would mean to be present within it with attention and responsibility.<\/p>\n

I find this framework useful not because it validates what I do, but because it gives me a way to think about dimensions of the work that are hard to describe in purely photographic terms. When I sat with Michael and Margriet in their backyard, or with Justin in his apartment, the listening was not just rapport-building. It was a form of attention to the person in front of me that shaped what I could see, but also what I could offer\u2014respect, patience, the sense that their time and story mattered. When I ask a participant how they want to be photographed, I am trying to make room for their sense of what feels honest and recognizable to them. Laugier defines care as “a response appropriate to the other, according to circumstance,” requiring “a sensibility to the situation and the ability to improvise” (226).\u00a0 Instead of abandoning the session when Andrew\u2019s chemotherapy kept disrupting our plans, those weeks of texting with Sarah became an exercise in flexibility and empathy that treated their circumstances as something the work had to accommodate, rather than as a reason they could not have the experience at all.<\/p>\n

Jordan, in her analysis of Martine Franck’s photographic work with aging subjects, describes a practice that resonates with much of this. Franck spoke of the camera as a \u201c barrier that one is constantly breaking down, so as to get closer to the subject\u201d (qtd. in Jordan 11). What Jordan argues is that Franck’s sustained attentiveness to the people she photographed was not incidental to the images but constitutive of them. Her photographs were “at once a residue, and a promoter, of the relationality that is her true goal” (13). In other words, the image is not the endpoint; the relationship is. This resonates strongly with what I am trying to do with my work at Patient Voice, as described in the previous section.<\/p>\n

I do want to be careful here. The asymmetry between photographer and subject does not dissolve merely because the process is collaborative. I still hold the camera. I still choose the frame, the angle, the moment. The first-person narrative that accompanies the portrait was written by someone who interviewed the participant by phone, and therefore, it is a translation of their voice, not their voice itself. The participant reviews and approves, but the process’s structure ensures that multiple intermediaries shape how their story reaches the public. However, care ethics, as Laugier further points out, is a practice, “not ‘only’ a moral feeling or disposition” (226). Reading Patient Voice through this lens, my experience suggests a practice that has gradually shifted from merely photographic to relational. It draws attention to the value of time spent talking in a kitchen, of postponing when someone is too unwell, of inviting and honouring refusals of particular images, and it turns those decisions into things I can try to make more intentional next time.<\/p>\n

What gives me some confidence that this orientation matters is what happens after the photographs are made. The comment on Justin’s post from someone living with HIV, Andrew and Sarah’s GoFundMe reaching people through their story, Justin asking me to come photograph his harm reduction event; these are small outcomes, but they suggest that photographs made through a process of attentiveness and reciprocity can participate in something beyond representation\u2014in the kind of community Patient Voice has set out to build. Not community as an abstraction, but as something that forms when people encounter each other’s experiences and respond.<\/p>\n

6. Conclusion<\/h2>\n

This paper has been an attempt to articulate a photographic practice from the inside. It has reflected on two Patient Voice stories, the encounters that produced them, and the frameworks that help me understand what I was doing and why it mattered.<\/p>\n

There are obvious limitations. This paper is one photographer’s account. Justin, Andrew, and Sarah were not asked to reflect on their experiences of the process. Their perspectives would complicate and probably correct parts of what I have written here, and a fuller version of this project could include them. I have also not addressed in any sustained way what happens when these images reach the public. For example, how viewers interpret them, what gets lost or transformed, and whether a relational approach is even legible in the finished image.<\/p>\n

There is something worth pausing on, however, before closing. We live in a time saturated with images. We photograph ourselves constantly and are photographed in return, often without much thought. In some ways, the anxieties Sontag raised about photography’s acquisitive power have become so ordinary that they barely register anymore. And yet, not everyone has a photographer knock on their door and ask to make their portrait. Steve McCurry once described his camera as a passport. As photographers, with a camera in hand, we sometimes get access to people, places and situations you would not otherwise reach. I think about that in relation to the over one hundred people who have let me into their homes for an hour or two to make a photo.<\/p>\n

And so, the people I have met through Patient Voice and the stories they have shared are not things I take for granted. They have shaped how I understand what photography can be. They have shaped me. If this paper accomplishes anything, I hope it suggests that the encounter matters as much as the image, and that how we make images of and with others deserves the same kind of careful examination that we give to what those images represent or mean.<\/p>\n

 <\/p>\n

\n

 <\/p>\n

Thanks to Andrew, Sarah, and Justin for letting me share our experience, correspondence and images as part of this project.<\/p>\n

 <\/p>\n

\"\"
Sarah and Andrew (Coulson 2026).<\/figcaption><\/figure>\n

 <\/p>\n

\"\"
Justin (Coulson 2026).<\/figcaption><\/figure>\n
\n
Work Cited<\/h5>\n

\u201cAbout.\u201d Patient Voice, https:\/\/www.patientvoice.io\/about<\/a>. Accessed April 3, 2026.<\/p>\n

Barthes, Roland. Camera Lucida: Reflections On Photography<\/em>. Hill and Wang, 2010.<\/p>\n

Bell, Susan E. “Photo images: Jo Spence\u2019s narratives of living with illness.” Health: 6.1 (2002): 5-30. <\/span>https:\/\/doi.org\/10.1177\/136345930200600102<\/a><\/p>\n

Benjamin, Walter. “A short history of photography.” Screen<\/em>, vol. 13, no. 1, 1972, pp. 5\u201326, <\/span>https:\/\/doi.org\/10.1093\/screen\/13.1.5<\/a><\/p>\n

Berger, John. Ways of Seeing<\/em>. Penguin UK, 2008.<\/p>\n

Ch\u00e9roux, Cl\u00e9ment and Julie Jones, editors. Henri Cartier-Bresson: Interviews and <\/em>Conversations 1951\u20131998<\/em>. Aperture, 2017.<\/span><\/p>\n

Coulson, David. Photograph of Michael and Margriet. 1 Oct. 2020. Author\u2019s personal collection.<\/p>\n

\u2013\u2013\u2013. Photograph of Justin. 21 Jan. 2026. Author\u2019s personal collection.<\/p>\n

\u2013\u2013\u2013. Photograph of Andrew and his baseball memorabilia. 21 Mar. 2026. Author\u2019s personal collection.<\/p>\n

\u2013\u2013\u2013. Photograph of Andrew and Sarah. 21 Mar. 2026. Author\u2019s personal collection.<\/p>\n

\u2013\u2013\u2013. Screenshot of text exchange with Sarah. 20 Apr. 2026.<\/p>\n

\u2013\u2013\u2013. Screenshot of email correspondence with Justin. 20 Apr. 2026.<\/p>\n

\u2013\u2013\u2013. Screenshot a comment on Justin’s Patient Voice story shared on Instagram. 20 Apr. 2026.<\/p>\n

Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics<\/em>. University of Chicago Press, 1995.<\/p>\n

Freeland, Cynthia. “Portraits in painting and photography.” Philosophical Studies<\/em> 135.1 (2007):\u00a095-109. https:\/\/doi.org\/10.1007\/s11098-007-9099-7<\/a><\/p>\n

Hariman, Robert, and John Louis Lucaites. “Seeing the public image anew: Photography exhibitions and civic spectatorship.” The Routledge companion to photography theory<\/em>, edited by Mark Durden and Jane Tormey, Routledge, 2019, pp. 157\u2013175, https:\/\/doi.org\/10.4324\/9781315727998<\/a><\/p>\n

Jordan, Shirley. \u201cAgeing and Care in the Visual Field: The Photography of Martine Franck.\u201d Contemporary Narratives of Ageing, Illness, Care<\/em>, edited by Katsura Sako and Sarah Falcus, Taylor & Francis Group, 2021, https:\/\/doi.org\/10.4324\/9781003058618<\/a><\/p>\n

Koggel, Christine M., and Joan Orme, editors. Care Ethics: New Theories and Applications<\/em>. Routledge, 2015.<\/p>\n

Laugier, Sandra. “The Ethics of Care as a Politics of the Ordinary.” New Literary History<\/em> 46.2 (2015): 217-240.<\/p>\n

Newhouse, Nikki et al. “Pain and the Internet: Transforming the Experience?” Painscapes: Communicating Pain<\/em>, edited by EJ Gonzalez-Polledo and Jen Tarr, Palgrave Macmillan, 2017, pp. 129\u2013155, https:\/\/doi.org\/10.1057\/978-1-349- 95272-4<\/a><\/p>\n

Pardo, Rebeca. “Photography and Mental Illness: Feeding or Combating the Stigma of Invisible\u00a0Pain Online and Offline” Painscapes: Communicating Pain<\/em>, edited by EJ Gonzalez-Polledo, and Jen Tarr, Palgrave Macmillan, 2017, pp. 129\u2013155, https:\/\/doi.org\/10.1057\/978-1-349- 95272-4<\/a><\/p>\n

Sontag, Susan. On Photography<\/em>. 1977. Picador, 2025.<\/p>\n

\u2013\u2013\u2013. Illness as Metaphor and AIDS and Its Metaphors<\/em>. Anchor Books, 1990.<\/p>\n

\u2013\u2013\u2013. Regarding the Pain of Others<\/em>. Picador, 2003.<\/p>\n

Squiers, Carol. The Body at Risk: Photography of Disorder, Illness, and Healing<\/em>. University of California Press, 2005.<\/p>\n

\u201cSwinging for the fences: Andrew & Sarah\u2019s story.\u201d Patient Voice, 13 April 2026, https:\/\/www.patientvoice.io\/shorts\/swinging-for-the-fences- andrew-sarahs-story<\/a>. Accessed 14 April 2026.<\/p>\n

\u201cUnfiltered, unapologetic, and undetectable: Justin\u2019s story.\u201d Patient Voice, 26\u00a0 Jan 2026, https:\/\/www.patientvoice.io\/shorts\/unfiltered-unapologetic-and-undetectable- justins-story<\/a>. Accessed 7 April 2026.<\/p>\n

 <\/p>\n

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