Dangerous Substances.

By Posted in - Life Journeys on August 9th, 2013 dangerous

The following photo essay Dangerous Substances and Visible Evidence: Tears, Blood, Alcohol, Pills  can be thought of as a type of puzzle or detective story that combines image, voice and walking to uncover how a city’s streets, buildings and neighbourhoods are mediated by ongoing, often highly idiosyncratic, interior dialogues and emotional lifeworlds that derive from a person’s current existential concerns. This extends the idea of ‘Walking Fieldwork’ (Irving 2002, 2004, 2007) whereby I would walk alongside people as they carried out their everyday journeys and asked them to narrate their thoughts and experiences as they emerged in action into a tape recorder (more recently by using a radio microphone and digital voice recorder, also see Pink (2008) for a practical approach to combing video, sensory experience and walking). Here walking is used to understand the phenomenology of the moving body by crafting contexts of experience that are already lived in a person’s daily life but which otherwise might not be externalised or made public. By walking around familiar spaces while narrating the objects, places and people they encounter, my co-walkers offer glimpses into the streams of thought, mood and emotion that comprise their lived experience but exist beneath the surface of their everyday public activity. As such ‘Walking Fieldwork’ is as a performative technique whereby I accompany people as they narrate their emergent thoughts and experiences in real time. The idea of combining walking, performance and photography stretches as far back as Picasso’s walking tour of Paris as staged and photographed by Jean Cocteau during the First World War on August 12th 1916, and was further developed in Jean Rouch and Edgar Morin’s Chronicle of a Summer (1960) where the new technology of synchronous sound opened up new creative possibilities for combining film, walking and narration. Like Walking Fieldwork, such techniques can only offer a glimpse into those realms of experience that can be articulated and approximated through words and images within a public, narrative encounter, and thus cannot claim to provide a comprehensive approach to interiority. Nevertheless, by attempting to provide a deeper, experientially rich understanding of the interaction between people’s movements and their expressive inner lives Walking Fieldwork attempts to offer some basic ethnographic evidence about how interior states emerge during action and in situ.

The walk in question Dangerous Substances took place on a sweltering hot day in New York, when Alberto and myself recreated the walk he made in August 1987 when he was diagnosed with HIV/AIDS.  Our walk follows the same route Alberto walked that day, and takes us from his apartment on E1st St. to the local subway at 2nd Avenue to W23rd and over to the Baumgartner Health Center on W27th St. where he was due to collect his results. It then retraces the journey he made when returning home after diagnosis and attempts to show the processes whereby a person becomes detached from existing ways of being and then begins to reclaim meaning, reimagine life and forge a future. An HIV test is quite simple. Blood is drawn and tested for anti-bodies indicating the presence of HIV and nowadays results can take just 15 minutes but until recently it could take 14 days for the results to be ready. Accordingly the time between the test and results was often a period of radical uncertainty whereby a person dwelt in the world as someone who may or may not have a terminal illness and often found themselves imagining two possible futures, one of life and one of death. The walk and the photo-essay can be seen as a collaborative attempt by Alberto and myself to understand the consciousness of someone confronting the radical uncertainty of their own existence in a public place. Namely, a person who remains a social being and is required to act accordingly on the street but whose inner dialogues and lifeworlds are not always made public. Dangerous Substances attempts to bring to life through a dramatisation of being, the thoughts, dilemmas and urges Alberto experienced while walking to and from the clinic as retrospectively understood in relation to his subsequent life history. It encompasses two different modes of walking along the same streets, one bathed in the intensity of having just been diagnosed with AIDS, the other while narrating the same route as a piece of performative ethnography as shaped by the narrative encounter with myself. It includes various detours and describes substances such as blood, alcohol, tears and pills in order to show how these become intertwined with emotions such as hope, fear and defiance. It asks us to consider what counts as ‘evidence’ and what status we should ascribe to the emotional lifeworlds Alberto describes without reducing them to static or reified dimensions of being. I took the images while Alberto narrated into a voice recorder as we walked. Here I try not to pre-figure Alberto’s experience or over-interpret his narrative by providing too much information or explaining the exact relationship between the images and the text. Instead we rely upon Alberto’s own words and the reader’s imagination to understand how other “people immediately experience space and time, and the world in which they live” (Jackson 1996: 12). 

Dangerous Substances

a1

Leaving Alberto’s apartment: 

Leaving Alberto’s apartment: I’m wearing a shirt with red stripes, like blood, like the blood in veins, which I did on purpose. It’s something that you can’t forget. I’m reminded every day in that, well number one I like theme parties, but the other thing is that even though I don’t live my life as a person with AIDS, I’m actually just Albert, but I don’t deny it either and I can’t deny it because twice a day in the morning and at night I have to take a handful of pills that remind me that I’m a man living with illness. With the disease it’s the same way as being Mexican or being gay are aspects of myself. Someone asked me the other day what did I do, and I could think of two things, I’m an artist and a caretaker. But a caretaker is really what I am in that I’m taking care of myself, which especially during these last couple of months with all these physical challenges is often a full time job. But I’m grateful for so many things and wearing a shirt like this just reminds that, yes, there is something that is coursing through my veins that is insidious, that is deadly, that can take a turn at any time but that I’m healthy now and have survived where so many others haven’t and are dying. As we speak two thirds of the world doesn’t have the support of doctors or medications, and even those people that live here that can’t afford to pay for the medications are struggling. I told my roommate that I was going to get tested and he knew that I was enduring the long wait. I don’t remember exactly how long the wait was. I know it felt interminable then. It felt like forever. I think it was at least a week, maybe even longer. Time just crawled. I actually recall going to bed early just to make the next day come faster so that I would be closer to finding out my status even though the biggest part of me really didn’t want to know and the other part of me assumed the worst. They called to tell me the results were in and could I come to the centre to collect them. It is policy not to give results, whether positive or negative, over the phone, which was another annoying factor as I don’t know why they couldn’t just tell me over the phone. I was hoping I might be negative, I am sure my roommate was also hoping that I might be negative, although unfortunately I wasn’t.  

 

a2

From 2nd Ave to W23rd St:

From 2nd Ave to W23rd St: I remember walking there on that day with a feeling of anxiousness. Anxiousness and ambivalence and fear, especially after the wait one had to endure back then.  During the wait I had kept the anxiousness to myself, the frustrations and impatience about the time crawling.  As I left my apartment I was filled with trepidation and I remember being upset too about how long it had …at the system that forced people to wait for so long for this life changing result. If I’d been negative of course I’d be thrilled as anyone else would and you could move on from there but I assumed I would be positive, as Stephen had died in May. And I’d waited this long to get tested which took all my courage and strength just to go there those days previously because I really didn’t want to know. At that point I hadn’t known anyone that had died, except for Stephen, hadn’t really read the newspapers or medical things and had actually been consciously indifferent. Stephen died a horrible death from AIDS in Sydney, Australia, two weeks before he was due to visit here one last time before he died. We were going to meet him at the airport in his wheelchair but he ended up in coma. I spent the next few months assuming that I had it too but not wanting to do anything about it or confirming the obvious. But I finally did go for the test and then had to endure the wait. There was also hope as I walked. I was hoping I wouldn’t be. I knew that whatever …I’m sure I even bargained with the gods. God please make me not. Even though I’m a lapsed catholic, I was a good alter boy at one time. I’m sure there’s times when I have sought solace in that. The Virgin Mary, The Guadalupe, is such an icon in Mexican culture. I chose to go on my own as I didn’t want to burden anyone. One of reasons I came by myself is that it took so much to get tested. I’d put it off for months and felt I needed to muster enough courage in that if the diagnosis was positive, from that moment I would have to find the strength, and so wanted to find the strength right from as soon as she said: your result is positive. To carry on, to go on. I was 26, soon to be 27. And so I took the subway to 23rd Street like I did today and then walked these blocks like I did today. Of course the first time when I got the blood drawn I’d never been here but the second time I was familiar and it’s funny right now I’m seeing that soldier statue which I don’t recall from back then which is perfect for this place as we’re all fighting things in our life and this is what I’m fighting with and that soldier with the gun in his hand is a pretty good symbol.

 j3

 Approaching the Clinic:

Approaching the Clinic: Finally just getting here and seeing this building which looks like a bunker and at the time, as now, there was a war going on against this pandemic but especially back then, there wasn’t hope. To test positive was a death sentence and it was just a matter of time…of how much time you had. Right now I can tell you just seeing this building again really brought tears to my eyes in a way that surprised me again. Every time those feelings well up that I carry so much, I don’t know…grief or loss…loss of a normal life… loss of maybe a long life. I really had to fight back the tears when I was looking, because this is where it all started for me. I don’t want to go in closer, it’s like a portal to a nightmare and I don’t want to go there. It’s like when you wake up from a nightmare and you don’t want to go back to sleep because you’re afraid of having it again: that’s how I see that entrance. And I can tell you what it’s like in there, I can tell you it’s that off green colour and I can see the glassed-in reception booth. I feel that I am filled now with the same fear like I was that day…and it’s like walking into that same sort of “should I or shouldn’t I” when you walk into a mausoleum  or… There’s just memories there that are uncomfortable. Because it’s here where it all changed. This was the place that was the beginning of a new chapter in my life that was at the time the beginning of the end because there wasn’t …because when I tested positive there was no hope then …you could pray but then it was just a matter of luck of the draw of how long you’d have before that wasting Kaposi’s’ Sarcoma covered death. I’m feeling stronger now. I feel like I’ve overcome my fear. I think that like any strong emotion you need to go through it, and pass through it and I think I did that by talking about it just now, by articulating it. This is the room. That’s where I sat. I remember I sat right there by the wall. Just there. They took me into one of those little side rooms: that first room and that’s where they drew the blood the first time and that’s also where I was called back to collect the results and I remember I was by myself and there wasn’t anyone else in the waiting room when I got the results. The woman was very nice but matter of fact and she gave me more information than I needed, although I know she was just being thorough and doing her job. Information about condoms and safe sex. But when she told me the results I couldn’t hear anything else, just the scream in my head.  And now what?

 

j4

Leaving the Clinic:

Leaving the Clinic: All of a sudden I was part…I was a person with AIDS. Back then it didn’t matter, you were going to die and so when she was telling me all these safe sex precautions I was reeling and thinking, what now? and how long?  Get me out of here! I’ve got a lot of living to do and I actually sort of blanked out. She told me about a support group that was meeting for people with HIV/AIDS over in my neighbourhood but I remember not hearing much and just wanted to get out of the room. I was drinking regularly at the time and my main thought was that I just need to escape from what was reeling in my head, and back then alcohol was the easiest way. I walked in a daze and I remember I was holding back tears. And I wasn’t sure what I was going to do. I was lost. I didn’t know where to turn, what to do.  I thought of Stephen but I also thought of the death, the wasting, the incontinence, the Kaposi’s’ Sarcoma, the purple lesions. Telling my parents. Who to tell? How to tell? When to tell? Who should know? Who needs to know? Who would want to know? I thought even though I’m in this metropolis with hundreds of thousands of people it was just me and how I was feeling – nothing else mattered at that moment except what was going on inside my head, my heart. And of course that was all to do with what was going on in my body and that diagnosis. Did you notice that there wasn’t a sign on the room? The other ones had ‘natal clinic’ ‘immunisation’ but that one didn’t have a sign. If I had any plans that day to do anything they were cancelled. I was wondering what to do next? where to go? what to do? what to do at the moment? what to do with the rest of my life? Why do bad things happen on nice days? 9/11 happened on a most beautiful clear blue sky and this happened to me on such a beautiful day too, It was the first few days of August and this coincided with when I was hit by a car back on August 1st 1981, which was another life changing moment. It’s interesting that both these things happened in August. I don’t recall much more because I really was walking in a daze. There’s ‘Night of the Living Dead’ this was ‘Day of the Living Dead’ because back then once you got that diagnosis – it was a terminal diagnosis – you were going to die – and by that time it was across the board, young, old, rich, poor, famous and everyone else. Rock Hudson. I was like a horse with blinders on, the people I was passing were like cardboard cutouts. Nothing mattered to me. How they looked. Where they were going.  I was just overwhelmed.

 

a5

 Sushi Bar at W 23rd St: 

Sushi Bar at W 23rd St: I was just walking and looking for some distraction and a way of numbing the emotions of the moment.  That’s pretty much how I operate now in times of stress and back then drinking was my favourite distraction, a way of numbing and medicating emotions. I would drink to celebrate good news and to deal with bad, stressful news. Alcohol was a catalyst to bring out deeper feelings that me and my drinking buddies would share as a necessary part of my life. My heart went out to the people in the waiting room. Did you notice that they were all people of colour. They could only have only been there for one reason, the same reason I was. Though things have changed, no-one wants to go there in the first place and they are as anxious, and hopeful, and scared and fearful as I was. As I was walking to the train, I saw a Sushi place and they were advertising Saki and so I went in and sat at the bar, on the second chair at the end on the left. I ordered at least two of the big Saki bottles and I didn’t stop until I was drunk enough so that I was sure I could go on with the rest of my life. It was bizarre, the TV was going on as it is now but wasn’t a flat screen. The world was going on as normal, people were eating and I was looking out of the window at the people going by. People walking by blissfully unaware of death. I wanted to go out and tell everyone but at the same time I didn’t because of the stigma. I sat and felt sorry for myself, was devising plans for how to deal with this new path. I remember the bartender asked if I was okay, if I wanted something to eat. He was probably concerned as I was just drinking, not eating. I’m sure I said I was okay, watching TV and looking distractedly out of the window. I want to say I was here for a couple of hours but it was probably not, although it was at least an hour. I was only 26 and then all of a sudden I was sitting here with this diagnosis thinking I don’t want to die now, I’m not ready. Life is too short to begin with and I am given a diagnosis that might shorten my life to a matter of weeks, months. Years if I was lucky. The concept of time; plans, holidays, seasons: our lives are sort of differentiated by these man-made markers of time. I had a birthday coming up, I was going to be 27. It reminded me how young I was. I knew I would be going back to see my parents over the Christmas holidays, but I didn’t actually tell them for a couple of years.

 a6

2nd Ave and St. Marks Place:

 2nd Ave and St. Marks Place: I was wondering if I would see 30 and thought my goal was to see 40 which coincided with the millennium. I knew that I’d have to live each day one day at a time but I wasn’t sure how, when or if I was ready to. I waited until 3 years later until I actually saw a doctor. There was nothing really they could say or do at the time other than advise on diet and prescribe that poisonous drug AZT. I wondered if there was someone I could put a face on that I thought could have infected me, wondered whether I had given it to Stephen. I sat there thinking I was too young to die, thinking about what I hadn’t done, hadn’t experienced, realised I needed to make decisions, to find a strategy for going on, and in fact even the getting drunk was strategic. A lot of these choices, or rather the rationale behind these choices only come in hindsight, you act first and then afterwards think what brought me to that point: why did I make that choice? There’s one thing I know but it’s something I sometimes wish wasn’t true and that is we are what we are because of where we’ve been and that will always be the case. After I’d sat and drunk three of those big Saki bottles, I was very drunk but that gave me the courage to go to the support group they told me about at the clinic. One of my biggest fears was talking and speaking in groups, but the alcohol got me down there. Drinking always brought things to the surface that otherwise would have stayed repressed, that I wouldn’t have the words for or time to talk about.  If there was a day that I needed to share what I was feeling it was that day because I had been alone since I left my house, in the waiting room, leaving, sitting in the restaurant. I’d spent the last 3 hours dealing with it alone, which showed that I could but I knew that this thing was bigger than me and that I couldn’t cope with it alone. I felt that the alcohol might help me find a voice in the way that it did in other friendly, casual situations. To cross boundaries. Somehow I got myself there. I staggered up, and the meeting was already in progress, a circle of men, probably about a dozen and a moderator. If I recall everyone had just found out recently and so we were all in the same circumstance and sitting there  it immediately became clear that there was fear on every level, fear of living, fear of dying fear of medication,  fear of telling family, friends, fear of today, of tomorrow, and everyone had something to illustrate that. The fear permeating the room was the common denominator, which even then I understood that it was a natural reaction to a life without hope. What else could we expect from each other?

 a7

 Getting Back Home:

Getting Back Home: I sat there listening, considering that I was dying, that I was going to die from this, but part of me was saying I wasn’t ready to die. There were people sitting there of various ages, colours, sizes. And what my intoxicated ears heard clearly was that they were scared. They had seen the pictures, heard the stories and were resigned to their death. Sitting amidst all that caused a reaction. I reacted against it and I think I developed the fortitude and will to live there because I was so afraid of the kind of death that is shrouded in fear that I willed myself to try to find the strength or luck. Being surrounded by all of that fear, surrender to the disease, instilled a kind of defiance, a kind of resolve. I just wanted to live but I didn’t want to live in fear and so I sat there for about 20 minutes. The fear people spoke about gave me a real strength and sobriety.  I even began to get upset they were giving up, and realised that I didn’t want to be resigned to my death. I wanted to tell everyone to stop, that they were going to kill themselves because of the fear. Someone else was about to speak and that is when I actually got up out of my seat and stood up. The moderator asked where I was going and I said I was leaving and said thankyou for everything but this isn’t helping me and I don’t want to live my life in fear and  I didn’t want to die waiting to die. I said that I  was going to live and walked out with a sobriety and clarity that I didn’t have when I entered and held back the tears until I got back home…

Last Steps

Dangerous Substances can be seen as a collaborative attempt to combine walking, narration and imagery to research and represent the realms of interior dialogue and expression that comprise lived experience but remain beneath the surface of public activity. Interiority remains a contentious issue in social science but rather than debate it at a level of theoretical abstraction remote from people’s lived experiences and understandings, the intention here has been to turn interiority into a practical, research question to be addressed through fieldwork alongside the subjects whose lives we purport to explain. By re-walking and narrating the route to and from the clinic, Alberto offers us a glimpse into the ever-shifting trajectories of dialogue, mood and memory as they emerge into consciousness during action. His narrative ranges across many subjects, times and places—from California to Australia to Mexico; from religion to art to global inequality; from the 1980s to the Millennium to the future—and poignantly captures the process whereby intense experiences, emotions and events are remembered and reinterpreted. This not only recalls Heidegger’s point that interpretation and understanding are never free floating because they are always disclosed through a specific state-of-mind (1962), but also William James’s idea that reality is not a fixed property but something that “becomes true, is made true by events” (2000: 88). Certain moods may persist for hours, days or even weeks to create an experience of a world seemingly “shot through with regularities” and “essentially bound up with the way in which one moment in our experience may lead us towards other moments” (James 2000: 90) but no matter how entrenched a particular perception may seem it does not reveal an immutable reality but one that remains in process and can be reshaped by interior expression. As such walking is an activity that allows people to actively create their lived experience by being forced, through the sheer necessity of movement, to engage the world and thereby assign it new meanings and functions. Engagements with the world vary according to subjective transitions in being, such as alternations from illness to health, from fear to defiance, from despair to hope. Thus Alberto’s words do not represent a static perception but a specific lifeworld that is generated and expressed during the act of walking

This reinforces the idea that expressions of consciousness and other moments of disclosure in the field are not fixed properties of being but are generated through particular types of action. Different actions generate different modes of experience and expression, which in turn constitute different types of research data and evidence. For example people’s understanding of themselves and the world can be radically different when walking on a spring day, when talking in a late night coffee shop or when waking up the next morning after a bad night’s sleep. I would argue that this fundamental relationship between action, expression and what counts as evidence is often insufficiently addressed in fieldwork practice and data collection and that we need to develop new methods for understanding how specific moods and actions inform people’s interpretations of themselves and others. This essential contingency of expression is reinforced by the fact that memory is unstable right down to the level of the body’s proteins and chemicals in that during the act of recollection even long-term memories enter an unstable state before being re-patterned back into the brain and body (Nader 2003, Rose 2003). As many forms of data collection, such as life histories and testimonies, are retrospective in orientation rather than being carried out in ‘real time’, we might ask not simply how different qualities of mood and action inform recollection of the past and perceptions of the future but how we can research and understand people’s ongoing dialogues, moods and emotions as they emerge in ‘real-time’ during the actual experience: something that is as valid for everyday activities as extraordinary moments of being.

By re-walking the same route to and from the clinic, Dangerous Substances has sought to offer a practical understanding of how everyday actions are mediated by diverse lifeworlds, creating a specific fieldwork context in which realms of inner expression that would otherwise remain hidden are made explicit. It shows how despite the family resemblance between certain walking practices, we cannot ascribe any mutuality of experience (here defined as the sense of dwelling with other persons who imagine, experience and understand the world in a similar fashion), for example between Alberto and his fellow citizens walking along the street or even among those who have also just been diagnosed at the Baumgartner Clinic. This foundational discrepancy remains central to Michael Polanyi’s notion of indwelling wherein he argues that “no one but ourselves can dwell in our body directly and know fully all its conscious operations but our consciousness can be experienced also by others to the extent to which they can dwell in the external workings of our mind from outside” (1969: 220). It is thus possible, according to Polanyi, to dwell in another person’s expressive actions, including their words and bodily expressions, but not dwell in the specificity of their experience. This means as I walked alongside Alberto, listening to his narrative and engaging in a type of step-by-step bodily mimesis of his actions, I did not gain privileged access to his interior lifeworld given its irreducible uniqueness. Nevertheless there were occasions where I also felt deep emotions welling up and dwelt in a world generated by Alberto’s external expressions (see Leavitt 1996, Milton and Svas̆ek 2005, Throop and Hollan 2008). This suggests that while partaking in a shared practical activity is not always sufficient grounds to form a shared, embodied understanding of action (as is often argued in terms of theories of apprenticeship or Jackson (1983)), it nevertheless opens up the possibility of other types of knowledge and appreciation that do not presuppose commonality. Such as traversing the ground on foot…

Acknowledgements: First and foremost thanks to Alberto for engaging so wholeheartedly in this project and re-walking the route. Without his insights and commitment the project would not have been possible Thanks also to Loughborough University and the organisers of ROAM for inviting me to participate in the original event.

This article is dedicated to Stephen Worthington

 

Please leave a Comment...