Thank you very much for this kind introduction and thank you for inviting me to do this talk
today and to participate in the workshop tomorrow.
And I agree totally with the title of your presentation that it's very difficult to deal
scientifically with AFIC, but let's give it a go, right over the next.
What I will be presenting here during the next 40 minutes or so is part of a chapter
from a book project on cancer and social media that I'm working on in the moment.
It's very much a work in progress, I'm very much also looking forward to your comments
and suggestions.
So let's just jump into it.
An illness narrative is often defined, or at least by N. Georgić, as autobiographical
accounts of illness spoken or written by patients in both fiction and non-fiction books.
They can be in journalistic genres or on new media platforms.
And they can in principle also include narratives authored by relatives, caregivers, physicians
and novelists.
Historically, illness narratives began taking shape with patient case studies written by
nurses and doctors and sanatorium narratives published by tuberculosis patients in the
1920s and 30s.
In the 50s, polio patients started writing illness narratives and illness experiences
of celebrities were published as well.
As the story goes, in this type of research from the 60s and onwards, patients became
more critical consumers of medicine, for instance articulated through the women's health and
self-help movement of the 1970s.
A development that contributed to the formation of the politicized patient in the 1980s expressed,
for instance, in a lot of AIDS and HIV narratives trying to spread knowledge and fight stigmatization.
Since then, the amount of illness narratives have grown according to Georgić.
My interest is really what happens to these illness narratives when they go online or
when they are expressed, narrated in social media, what happens to the narratives and
also to the bodies carrying the illness and also our understanding of illness as such.
Because I would say the internet social media adds to this development by offering new important
platform, a new important platform for illness narratives with a set of specific consequences.
A wider array of illnesses and writers are now able to present their stories to the public.
Writing is most often published during illness and treatment giving the narrative a new dimension
of liveness and unpredictability as bodies of patients and readers entangle around the
real-time experience of illness suddenly.
Perhaps most importantly, illness narratives become networked in the sense that they travel,
they are shared and they start generating multiple forms of value across networks and
they can suddenly become the object of collective attention and viral dissemination and I guess
also become the center of the type of collective that you are studying in this PhD school.
This transformation will be the subject of my talk today but with a specific focus on
the current construction of a new form of entrepreneurial cancer practice on social
media which engage in projects of crowdfunding and intense continuous valuation.
So the main claim of what I am saying today in the talk and in my book is that we can
identify a tendency on social media to intertwine personal illness narratives, experiences of
cancer with entrepreneurial activities that focuses on using existential contingencies
to establish projects of everyday history making with the largest social, political
and economic goals.
And according to Sarswati, one of the really important writers in the field of entrepreneurship,
that would be the entrepreneurial spirit per se using a contingency, an obstacle to
build a new project.
Out of adversity comes opportunity, that's the idea that we face a hindrance but we use
it to build a new project and that's I guess the spirit very much sort of saturating these
illness blocks.
We got cancer, it's a problem but what can we do with it?
That's sort of the spirit in these case studies that I'm looking into.
So I would say characteristics of this new practice are entrepreneurship, an entrepreneurial
spirit combining effective accounts of personal suffering with the creation of social projects
and economic and social value and measurement.
This media communication, a will and ability among the patients to communicate illness
in new experimental ways across social media platforms and often with the goal of reaching
traditional broadcast media.
Once in a while I get a snap on my Snapchat from a cancer patient doing a blood sample
in the hospital.
So really sort of trying to use new media to tell the experience and narrative around
illness and treatment.
Effect, a transmission of effective intensity as followers experience real time processes
of treatment, recovery, sometimes death and participation.
The tendency that the ill person or relative becomes the centre of larger participatory
processes turning him or her into a kind of celebrity, a kind of crowd leader for instance
related to crowd funding money for research or treatment.
To give you an example, it's of course important to stress that this entrepreneurial cancer
practice of course still treats the disease as undesired, it's not that it's suddenly
turned into a gift or anything but they also seem to instrumentalise the illness as a narrative,
as an effective resource which can be used to create economic and social value and establish
new collectives.
An English blogger Rosie Kilburn that I've been doing research on describes it like this
on her blog.
My name is Rosie Kilburn, I'm 17 and I have cancer.
A few months ago I started thinking, what can I actually do with this cancer stuff?
I mean I have a quite strong story, right, 17 year old fighting cancer, pull on your
heartstrings, blah blah.
Surely there has got to be something that I can use my influence to do.
I wanted to do something long term so I was sitting in that hospital waiting room and
I decided to hold an auction, an art auction.
And that art auction creates a profit which is then turned into a web shop online and
the profit generated there is then channeled into a cancer organisation and cancer treatment
in the UK.
But for me she sort of incarnates that into entrepreneurial spirit saying, okay, this
is an obstacle, what can I do with this cancer stuff?
What kind of project value can I generate around the disease?
Other examples included in my book would be the blogs of Jessica Joy Rees here, communicating
across a range of platforms.
There's a whole sort of Jessica Joy Rees foundation, a relatively large economy connected
to that body today.
Fabian Bolin, a Swedish blogger over here with the warrior t-shirt, and Steven Sartan
which will be sort of the main case study that I'm moving into in a while.
These bloggers all use media platforms to communicate about their illnesses but also
to gain social impact during their sufferings by mobilising money and actions in favour
of organ donation, cancer research and support for children with cancer.
Another related tendency would be people crowdfunding money to be able to get treatment themselves
or forms of treatment not offered by the local healthcare system.
But also larger, compassionate crowdfunding sites such as Give Forward, You Caring and
GoFundMe.
Talcott Parsons, I guess it's a name you're really tired of hearing but I just want to
mention the sick role from him that you probably know most of you.
But in the social system from 5051, the sociologist Parsons described the then predominant and
institutionalised set of expectations that patients and their surroundings are expected
to act according to.
He termed the subject position related to these expectations the sick role, which is
guided by four assumptions, that a sick person should be liberated from his everyday social
responsibilities like going to work, participating in social events.
The sick person is allowed to sort of withdraw from public space to get some sort of treatment.
That expectation would be that the state of sickness cannot be changed by the force
of will.
Illness is a biological state, not a choice and it should be treated as such.
Illness should be approached as an undesired biological state that a person would want
to get rid of.
And the sick person should seek proper technical and scientific competences to get treatment
and the person should collaborate and respect the technical authority of the doctor in order
to be cured and thus able to return to sociality once again.
And you could say the larger context for my work is that this sick role is being replaced
by something else.
It no longer really explains how illness works.
It's being replaced by more participatory, biomediated, unpredictable, visible, activist,
but also economically viable ways of being sick.
And a point for me would be that this tendency should neither be understood simply through
neoliberal criticism or techno-optimist appraisals, but rather as linked to the development of
the biomediated body, a concept from Patricia Clough, a body which is increasingly entangled
with technology, with non-human actors.
Here the human body and the sociology of the sick role connected to it is transformed
into something different.
Into what Lisa Blackman with Eugene Thacker calls a human-machine assemblage, a delocalized
and effectively distributed body with new capacities and new modes of existence.
And I would argue this biomediated body also challenges our understanding of what a sick
body is, what it can do, perhaps even what illness and cancer is.
Maybe no longer only something, a body as organism has or carries, but also a social
effective force, creating new collectives, new connections, forms of circulation, forms
of valuation, but also new dilemmas and new forms of regulation.
So I would argue this transformation going on creates various and very complex effects
and mutations that we need to follow, map and discuss in their diversity, which is what
I'm trying to do in this book project.
Let's move into the case study that I want to focus on here today.
The online platform produced by the English blogger and cancer patient Stephen Sutton
is perhaps the most well-known, I think, example of this entrepreneurial tendency explored
here.
Would anyone know his name?
Is it sort of a, have you heard of him?
No.
So he's not famous like that.
Okay.
Nevertheless, he's a relatively well-known example of the entrepreneurial tendency explored
here and I will use the rest of my paper to sort of move into that case study.
The online communication about his cancer process took place on a variety of social
media platforms, Facebook, Twitter, YouTube, a personal website, including a blog.
Here he shared his very personal and intimate struggle against cancer, but also crowdfunded
approximately 5 million British pounds, which would be what, 6.5 million euros, something
like that, for the Teenage Cancer Trust, so like a relatively big amount of money collected
through this illness narrative and communication.
And that happened through more than 182,000 donations.
So 182,000 people donated something to reach that amount.
I will focus mainly here on the open Facebook page as it was the primary site of engagement
for Sutton and his readers.
And to give you an impression of him and the style of communication, I will show you
a short clip of Stephen.
The old saying goes, when life gives you lemons, make lemonade.
But what do you do when life gives you cancer?
This is not a sob story, this is Stephen's story.
I was diagnosed in September 2010, all together I've undergone 7 lots of surgery, 30 sessions
of radiotherapy and 4 different regimes of chemotherapy and soon I'll be starting a fifth.
The aim of Stephen's story is to spread as much positivity as possible, to show people
what it's like to have something go wrong with your life but not to be defined by it.
I think one of the things that Stephen always stresses is, I may have cancer but cancer
doesn't have me.
It doesn't have to be about suffering.
One week after the original operation to move tumours from a bowel and one day I was at
the hospital, I ended up going to a fancy dress party and the surgeon gave me advice
to go home, take it easy and basically do nothing.
But I decided to go to this party dressed as a granny in a wheelchair and because of
how much weight I'd lost and because of how thin and pale I was, I was pretty convincing.
But by the end of the night I was being pushed round in front of a conga line in my wheelchair,
having an absolutely fantastic time and this was me from the off making a statement of
how are we going to overcome my illness.
Stephen Sutton was an exceptional student, exceptional in academic terms securing some
of the best results we have ever seen in the history of this school.
He was going through chemo once a fortnight and literally the only time he had off school
throughout the whole thing were the three days where he was having the chemo.
Stephen is perhaps the most amazing person I've ever met, let alone student.
He's very special because he refuses to let this beat him or govern the rest of his life.
He stuck two fingers up at cancer basically and I think that's the kind of attitude that
people in this school need it to see.
It's made lots of young people here think quite differently about the sorts of decisions
they're making and how they need to make the best of their opportunities.
In a weird way I could see my first cancer diagnosis as a good thing.
It was a huge kick of the backside that gave me a lot of motivation for life.
On 13th January 2013 I made a Facebook page called Stephen's Story.
On the page I included a bucket list of 46 things I want to achieve in the near future.
Some of the things in my bucket list include skydiving, crowd surf in a rubber dinghy,
the drum in front of a huge crowd, I ended up doing this live at Wembley.
Hugging animals bigger than me was also on the list.
Another thing on the bucket list was to get a tattoo.
I ended up getting a trolled off tattooed underneath my armpit with my armpit head
doubling up as a trolled off hair.
Since starting the bucket list I've had people come up to me and offered to raise funds for me.
For me personally to go on holiday or to tick off another item of my bucket list.
But I've actually refused and decided to give the money to charity instead.
I think when Stephen started his book at least we never...
Let's stop it there.
Just a bit of information on Sutton.
He was born December 94 in the UK.
He lived a relatively uncomplicated life until September 10 when he was first diagnosed with cancer.
December 2012 after a series of operations and chemotherapy treatments
he was told that the doctors could not cure his disease.
That he would be treated but there would be no cure for the disease.
January 2013 he established the Facebook page, Stephen's Story,
containing among other things this bucket list including fundraising initiatives.
And one of them, the initial targets was to raise £10,000 for cancer treatment.
So you could say he began communicating online when there was no longer any hope of recovery.
And the goal of this communication according to Sutton was to transmit his own intense motivation.
He describes it like that.
His own capacity to act in effective terms to other people with the opposite problem of himself.
Lots of time but no motivation.
So that's sort of his explanation of why he's doing it.
He has a lot of motivation, a lot of capacity to act, not very much time.
So therefore he wants to sort of spread this capacity to act to other bodies.
So he seems aware of his body and his story's ability to affect other bodies' capacity to act
and of the capacity to act as a quality that can travel between bodies through specific mediated encounters.
And he approaches his own capacity to act as a resource that should not be wasted but invested in the social.
Until his death on May the 14th, 2014, he became the object of more and more attention and hype
on both social and broadcast media and was turned into a kind of weak body celebrity.
We've investigated that idea of the weak body and its mobilizing potential in the book on global media
and biopolitics that you mentioned in your introduction.
At the time of writing, 1.3 million people have liked the page, the most watched video, more than 600,000 views,
more than 180,000 followers on Twitter, and his mother's post on his death, including a tribute to his achievements,
was liked more than 800,000 times and shared and commented on around 200,000 times.
So I would say relating to this specific post, a regular online crowd, which I have elsewhere,
defined as the effective unification and relative synchronization of the public in relation to a specific online site,
seems to be created and expressed through spontaneous hearts, tears and a lot of digital kisses.
According to the digital methodology software, digital footprints, the total number of comments reached 480,000
and number of likes more than 4,450,000. So it's really attracting a lot of attention.
And always a lot of numbers surrounding this body. I would sort of come back to that in a moment.
It's sort of very striking that when we hear a story or read a media story about it, it's always connected to a number.
And his sort of intensity is connected to metrification numbers in one way or the other.
Especially in April and May 2014, his page and project went viral,
established celebrities with social networking power engaged in making him go viral.
According to hashtagify.me, the One Direction member, Louis Tomlinson, was sort of the top influencer
in sort of spreading the story about Stephen Sutton over here.
One Direction, we know that, right? A sort of band for young people, a lot of fans out there.
So his post about Stephen was retweeted more than 53,000 times and got liked 90,000 times.
And as the picture shows, he also got a visit from the British Prime Minister, David Cameron.
And you could say both Tomlinson and Cameron increased the hype and social value of Sutton by engaging with his story.
But he, of course, also offers them effective and circulatory brand value by linking them to a story that affects viewers
and offers them an opportunity to feel and act in relation to a specific personal narrative.
So following Teresa Brennan, Sutton simply helps enhance or vitalize the media environments surrounding Tomlinson and Cameron.
As mentioned, his inspiring positivity and great energy was continuously highlighted in descriptions of him.
His raised thumbs, more or less consciously imitating Facebooks like Button, became his brand.
They have sort of come to symbolize his almost superhuman optimism, even in the most harsh and life-threatening situations.
This picture is from April the 22nd, where he made his first but premature goodbye post, which skyrocketed in terms of likes and shares.
I think the thumbs up on this picture is sort of interesting because it epitomizes, I think, for me, how affect technology, bodies and measurement intertwines in current media culture.
It shows how the body of Sutton in a way becomes like Facebook and how people react on Facebook by doing like Sutton.
He likes like Facebook. They like him on Facebook 400,000 times by liking like him.
For me, it underlines how social bio media invites and transmits affect,
but also sustains effective feedback loops that generate and reproduce effective patterns of relating to others that are further reproduced as affect,
quoting Papadistri's very good book on affective publics.
But also how the internet following Tony Sampson's book on virality becomes a catalyst for social imitative encounters
and creates what he calls vibratory events, which happen because small, unpredictable events can be nudged into becoming big, monstrous contagions without a guiding hand.
It also shows following Yousi Parika that we should not regard media solely as a technology, a political agenda or an exclusively human theme.
Media are, he says, contraction of forces of the world into specific resonating milieus, affording their rhythms as part of that resonation.
And I would say, in a sense, the bio mediated body of Sutton becomes part of a contraction of affective forces on the Facebook page that resonates rhythmically with the larger public,
entering into an almost tardian ray of imitation by liking, like Sutton, who likes, like Facebook.
Moving on to the affect methodology discussion, I would say my approach to affect is theoretically hybrid.
I'm not sort of in favor of any school or position in that in this field.
Following, for instance, Masumi, Brennan, Thrift, I would acknowledge that the concept of affect cannot be conflated with cognition and discourse.
It's not the same and affect is not produced by cognition and discourse.
It's a concept, I think, for the central eventfulness of the world in the sense that it describes how bodies are open to non-intentional and trans-individual sensations,
to events happening that are not simply results of discursive structures and constructions,
and that they can move into contagious bodily experiences of affective entrainment.
On the other hand, I would say I find recent critiques made by Lisa Blackman, Margaret Weatherwell, Ruth Lays, very relevant in pointing to the fact that it's extremely difficult to uphold any clear dichotomy between affect and discourse,
between affect and cognition, between affect and emotion.
Especially when doing empirical work, we have to be pragmatically open to understanding affective processes through messy material, what we've called messy material in our edited collection.
Messiness becomes sort of a precondition for doing empirical affect research.
Yeah, we have to move into this messy material always saturated with emotional, discursive and cognitive elements.
And I would say for that reason, I'm not particularly interested in theoretically policing affect.
I think there's been perhaps a tendency to police affect a little bit.
But deconstructing any attempt to analyze it has always, always already failed.
I would be much more interested in creative empirical approaches attempting to trace specific transmissions, contagions and attunements, which was the project in some of the contributions in this book with chapters by Anna Gibbs, Lisa Blackman, Celia Lurie.
The overall affective landscape of Sutton's Facebook page, of course, changes throughout its lifetime.
And it very much, I think, resonates with the bodily states of Sutton himself.
It offers a lot of positive support in times of distress and co grieving after the announcement of his death.
I've made this word cloud, which shows the relative frequency of the most used words on the page as such, both in the comments and in the posts made by Sutton himself.
I've removed less significant words like is, are, am, have.
And I think all although expressed through words, it may teach us something about the affective atmosphere of the page and perhaps help us approach it as an effective archive consisting of saved comments often made in the heat of the moment.
And perhaps somehow indexically touched by bodies in effect.
The cloud shows an interpersonal you atmosphere that the very big you would perhaps point to some sort of intimacy on the Facebook page with Stephen as the sort of the weak body crowd leader in the middle.
To give you the Stephen is so large because it's used one hundred and forty one thousand times on the page.
So the size here would sort of link to being used on one hundred and forty thousand times.
Yeah, it shows an interpersonal you atmosphere, which is also characterized by states of admiration, inspiration, very much by the transmission of digital kisses.
A lot of kisses, the X, the X, X, X over here, and we have a triple X, X, X there, which would be sort of interlingual for a kiss.
It's saturated with attempts to maintain hope and strength and in a well of sadness and comfort after the death of Sutton.
I think it shows how the public has transmitted primarily support and love towards Sutton and his relatives, which seems to, I think, underline the effective feedback loop mentioned by Papacharisi.
He transmits an enormous amount of positivity and capacity to act and receives a massive confirmation of support as the public enters a state of inspiration and care.
How am I doing with time? Do I have? It's OK. Yeah, perfect.
I think Sutton would be profoundly embedded in what Colin Gallitz and Anne Hellman have coined the like economy of social media.
According to them, the Internet has moved through various phases of measurement from counting hits to ranking the importance of pages through the number and the importance of in-links.
To this like economy based on what they call social buttons that show the total number of activities performed on a object and they refer to the like button on Facebook exactly as a social button with the double capacity to instantly
metrify and intensify user effects, turning them into numbers in the like counter while fostering further user engagement.
A point here would be that a social button like the like button has two functions at once. It measures and it multiplies within the like economy.
So data and numbers have performative and productive capacities. They generate user effects, enact more activities and thus multiply themselves.
Such dynamics are enabled through the medium specific infrastructure of the like economy, which simultaneously enacts, measures and multiplies user actions.
This would also be the case when it comes to sort of the affective dimensions.
According to Gallitz and Hellman, social buttons both measure and intensities and create a potential for future effects as the liked object circulates.
And I quote, the button provides a one click shortcut to express a variety of affective responses like excitement, agreement, compassion, understanding, but also ironic and parodist liking.
Yet the quantum data produced in such processes are not just metrications of intensities.
They also have intensive capacities themselves, entering various processes of multiplication.
So following Gallitz and also Lury in a different piece, this would imply that we should not look at the numbers of likes, shares and donations as simply scores,
measuring the effective social economic impact of Sutton, but rather as a participative metrics of value,
which is performatively engaged in producing more of the affect and impact that it simultaneously measures and multiplies.
I think the numbers always surrounding mentions of Sutton supports this. He creates affective engagement,
which is measured in these huge numbers, which again creates circulation and affective involvement.
And in some ways, I would say Sutton becomes even more effectively engaging due to the numbers connected to him,
as they always sort of seem to underline his extraordinary ability to act while being terminally ill.
In this sense, measurement of value is ongoing, lively, it's reactive by not only measuring, but also inviting users to participate more to better the numbers,
which are never simply scores, but also targets to move towards and hopefully beyond.
The score is not a measure of participation, but a participative measure, as it co produces what it attempts to measure, according to Gallitz and Lury.
This is expressed, I think, in the large amount of likes, which both measure an actual affective engagement and multiplies it by circulating Sutton in the like economy of Facebook.
But also on Sutton's just GIF page, I just want to open it.
Where measurement is not about tracking the movement towards a final target, the 100%, it's a lively and moving target,
expressed in the actual growing of the numbers beyond 100%, showing us that this value production could go on forever and that we could engage in it.
We are actually invited to move the score even higher and to better it.
Finishing, more or less.
Really quickly, this entrepreneurial tendency that I've been discussing here is growing.
But compared to what we know about ordinary cancer patients use of the Internet and social media, the actual creation of an entrepreneurial illness blog or profile is certainly a minority activity.
Most patients use the Internet to search information concerning the disease, for instance, concerning prognosis for survival and side effects of treatments to develop questions to ask medical authorities.
But I think that point would not imply that this specific type of entrepreneurial cancer narrative is not socially important.
On the contrary, it might be important as exactly a minority practice that attracts a large amount of public attention, participation, affective involvement and media coverage.
So it's not important because a majority of cancer patients tell or perform it in their social media communication, but because this particular narrative is one prominent way that cancer becomes visible to a broader media public.
And I think it also resonates with the larger cultural transformations regarding the body health and illness.
According to Nicholas, rose Western societies are facing a new era of biopolitics, which is not only focused on eliminating existing pathologies or problems, but also on singular individuals maintenance and tracking of their own biological processes in the attempt to secure future vitality or to reshape the vital future by action in the vital present.
This current biopolitical era fosters, according to Rose, a new form of active biological citizenship with a focus on the individual's responsibility towards their own biology, but also more activist forms of activity or collectives around biological problems.
That would be new forms of, for instance, what he calls biosociality coined by Habinov.
That would be patient communities, patient voices on the web.
So biological citizenship would be about individual tracking themselves, but it could also unfold through new forms of biological activism, for instance, in the AIDS activism of ACT-OP in the 80s.
Sutton's entrepreneurial, and that's my final point, project also, despite his decreasing vitality, unfolds a form of biological citizenship, I would argue.
He exchanges affects among his followers, such as admiration, inspiration, into economic value through donations.
Or rather, he converts these affects into what Rose calls biocapital, which again produces dynamic measurements in terms of likes, rising percentage scores, etc.
He channels this biocapital into an organization, the Teenage Cancer Trust, which aims at renewing and extending hope and healing, health and vitality for other young cancer patients by supporting improved treatment practices and research.
So Sutton, in a way, he knows the money collected cannot help himself, but that the value that he's helping to create may benefit other yet healthy or with Rose, pre-diagnosed citizens.
And in that way, I think he takes part in what Rose, following Sarah Franklin, calls the maintenance of hope in relation to cancer treatment.
In a way, he's a biopolitical challenge because he's young, prematurely losing his vitality, but I think he nevertheless acts in a way where his status as a potential challenge disappears completely.
His illness and veining vitality is modulated and transformed into a burst of vitality and hope.
I think using biological citizenship as a framework for understanding Sutton also stresses the dilemma of the case, because I think there's a lot of dilemmas in it.
On the one hand, as a biological activist, you can say he challenges the common understanding of what a cancer patient is, what a cancer patient can be.
He manages to create large biosocial collectives and he transmits a huge amount of energy and value into the social.
On the other hand, he exemplifies how the body, including the sick body, is increasingly, according to Rose, measured and acknowledged based on its ability to act, to create value and to maintain hope.
So this ability to glow, to transmit intensity in the moment of facing death, is in some sense what is measured, multiplied and turned into multiple forms of value on his social media platforms.
Or rather, illness in its network and bio-mediated form gets a new role by being entangled with technologies, where its ability to produce affect and intensity is translated into social media measurements, processes of ongoing valuation and bettering of moving targets, which can be invested in the future vitality of pre-diagnosed citizens.
So in conclusion, Sutton allows us, I think, to acknowledge that these entrepreneurial entanglements of technologies, bodies, diseases, economy and affect both could have an empowering potential through the creation of new collectives, new caring crowds and new forms of biological activism.
But also that it seems to resonate with a new era of biopolitics in which optimism, vitality, positivity become effective expectations that the sick and weakened body must perform according to.
That's it. Thank you very much.