Yewande okuleye medical cannabis online identity and illness narratives
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The plethora of illness narrative blogs gives readers a rich tapestry of insights on the pain and suffering experienced by people suffering from illness. The talk is a case study which uses the digital foot print to reconstruct an illness narrative to explore the multiple perspectives in co constructing an illness narrative online.
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Yewande okuleye medical cannabis online identity and illness narratives
- 1. CONFERENCE THE MEDICAL, ETHICAL AND LEGAL REPERCUSSIONS OF BLOGGING AND MICRO-BLOGGING EXPERIENCES OF ILLNESS AND DISEASE, QUEEN'S UNIVERSITY BELFAST, 11-12 SEPTEMBER 2015 HTTPS://EPATIENTSCONFERENCE.WORDPRESS.COM/ PROJECT HTTP://WWW.QUB.AC.UK/RESEARCH-CENTRES/INSTITUTEFORCOLLABORATIVERESEARCHINTHEHUMA / Queens University Belfast
- 2. CANNABIS SELF-MEDICATION, ONLINE IDENTITY CONSTRUCTION AND ILLNESS NARRATIVES Yewande Okuleye Introduction
- 4. Activist2.0
- 5. Cannabis as Medicine in the News Clark French @Clarkfrenchuk Sep 4Cannabis is Medicine: Sky News - Labour Debate - Cannabis is Medicine http://fb.me/1SFb0vT3y
- 6. Sam Dyer The Lone Ranger Activist 2.0
- 7. Medical Cannabis vs Biomedicine
- 10. What do you do when you’re diagnosed with terminal cancer? Sam is revealed to us on his mothers blog Sam’s love story
- 11. “I have a story to tell plus I’m finding the lonely nights very tiresome and saddening” Scratch
- 14. The only way to live is to die while you are alive Scratch
- 15. Challenge of data collection, analysis & interpretation
- 16. @ Cannabinoid2
Notas do Editor
- Today, there are more than 800million websites worldwide, 500 million tweets are sent every day and an estimated 2.4 billion people go online, every day. The rise of the internet and social media has changed, the way we work, the way we live, and the way we communicate. My presentation will explore online spaces as a site for constructing the identity of the medical cannabis patient/activist. The initial impetus for this paper is related to a strand of my history PhD research, which examines activist strategies and illness narratives, pre, and post web 2.0.
- For the first part of my talk, I will introduce you to the patient /activist 2.0 archetype and explain how the social media ecosystem supports their leadership vision and community building. The rest of the talk will focus on examining how the tensions between biomedicine and medical cannabis, frames the contours of online spaces and illness narrative discourse.
- Who is the patient /activist 2.0 archetype?
- An example to illustrate this idea can be found on social media conversations, about the recent labour candidate Sky debate about the legalisation of cannabis. Writing in his blog Cannabis is Medicine, on the 4th September 2015, Jonathan Liebling of United Patients Alliance notes “ It is rather sad, that politicians seem to giggle like school kids every time the topic is raised and perhaps the laughter in the audience, was merely majority remembering the last time they got stoned. But, we, at United Patients Alliance, don’t feel, that denying sick people, a legitimate, effective medicine, that vastly improves their quality of life, is a laughing matter. It certainly isn’t, to the 8000 medical cannabis patients whose voice and stories we represent “. Original post on Jonathan Lielbling’s blog :Cannabis is Medicine http://jlieblingcannabis.blogspot.co.uk/2015/09/sky-news-labour-debate-cannabis-is.html https://www.youtube.com/watch?v=s0qSRhBVsUw Twitter https://twitter.com/Clarkfrenchuk?ref_src=twsrc^google|twcamp^serp|twgr^author Jonathan Liebling Google +google.com/104832577857061054648/posts
- In contrast to the archetypal patient /activist 2.0, who have somewhat of a corporate identity, one could describe Sam Dyer as a Lone Ranger activist 2.0. And this is why Sam Dyer is of interest to me. The One Show: https://www.youtube.com/watch?v=eF5N76sR1PE : This Morning :https://www.youtube.com/watch?v=fdhbAmyif_Y : 7.22 mins
- The rhetoric about biomedicine’s, inability to meet the medical needs of the chronically ill, has become part of the universal mantra, which has driven medical cannabis activism over time. Sam reiterates this in this interview when referring to his wellness strategy and comments that “We, have the right, to cure ourselves”.
- Connotations about Marijuana Although Dr Dyer posits a robust argument in favour of biomedicine his framing of cannabis is situated and understood within the social construct of marijuana - the prohibited substance deemed to have no medicinal value, stigmatised by society and policed by the state. Dr Dyer is concerned about the illegal status of cannabis and although it was not mentioned specifically, Dr Dyer might have been concerned about the rising use of skunk, a high THC cannabis variant used by Sam’s generation. In other words Dr Martin Dyer calls it Marijuana It appears that Sam however had a different relationship with cannabis and we can only speculate, that in response to his brain tumour, Sam became an engaged patient. He might have used the internet and patient forums as a resource to research and gain a nuanced understanding about the contemporary discourse on the medicinal value of cannabis. In other words, Sam calls it medical cannabis
- And this is the case with Sam Dyer, as strands of Sam’s illness narratives are located on different sites on the internet. Primarily on his mother’s blog, SallyAnne Dyers Blog; Out of the fullness of the heart. Sally Ann started writing poems and reflective pieces as a coping mechanism to deal with Sam’s illness. https://sallyanndyer.wordpress.com/
- Sally Ann gives us a fuller and more detailed description about the chronology of Sam’s illness including an account about Sam meeting Jessa online, their engagement and the pain which ensued after their separation. In essence, Sally Ann chronicles a well -rounded account of Sam’s physical, mental and spiritual well-being. Https://sallyanndyer.wordpress.com/2011/05/11/welcoming-a-new-daughter/ September 22nd 2010
- Writing as Scratch, on a musician forum on Tuesday,21st September 2010 at 11. 16 am Sam reveals that “I have not been on these boards for about 3 years. I just grew away from here because it was more of an addiction than a pleasure, as are, well, most things in my life. I decided to come back, because I have a story to tell, plus I’m finding the lonely nights very tiresome and saddening”. This post reveals Sam’s vulnerability and resonates with medical sociologist’s Arthur Franks thinking where he observes that “The ill person who turns illness into story transforms fate into experience; the disease that sets the body apart from others becomes the common bond of suffering, which joins bodies in their shard vulnerability” http://www.mikeportnoy.com/forum/m2593397.aspx
- In addition to giving a space for us to follow Sam illness narrative, Sally Anne’s blog is important, because her blog allows her to marshal all the benefits of the social media tools of the patient activist. However, in contrast to the corporate activist 2.0 ecosystem, Sally’s blog captures a breadth and depth of subjectivities .This raises further questions for me, and I ask What role do family and care givers play within the illness narrative, if they, are producing or curating content online
- Although Sam initially came to our attention through the media, one gets the impression that Sam, our lone ranger wanted to have a private space to ‘just be.’ He seemed to find this private space on You Tube. Under the identity of Scratch 47, in his 28 min posting ‘Update, Life is Good ‘he describes ‘cancer boy’ as his alter ego and focuses on talking about his future plans. Here, You Tube allows Sam to suspend his illness persona and take on the persona of a budding entrepreneur sharing leadership insights, philosophy and positive thinking with his followers. https://www.youtube.com/watch?v=NESkFq45c4I
- Sam died in November 2014. Sally Anne wrote an extended blog post which chronicled Sam’s last days in a lot of detail. And within this role Sally Anne begins to answer a question I posed earlier. Can we begin to think of her endeavour as a type of collaborative storyteller of Sam’s illness narrative? The last blog post serves as an epilogue to Sam’s story and situates death within illness narratives. If we weave the bits and bytes into a coherent whole, then are online illness narratives essentially a different type of collaborative process which produce some type of collective intelligence? Who owns the narrative here? Where are the boundaries? Sally Ann reveals these concerns when writing in 2013, a year before Sam’s death she muses about the future direction of her blog. https://sallyanndyer.wordpress.com/
- My concluding thoughts from following Sam Dyers digital footprint highlights that not all e patients will be part of health forums, or have a corporate voice, or even a coherent illness narrative online, therefore we might need to pay attention to the gaps, breaks and transmutations in the trajectory of ever expanding social media spaces and connected networks, as the culture of connectivity might have blind spots, schisms and glitches, where we might lose the illness narratives of the lone ranger.