Post by HLTD50 student Lily

Storytelling is a powerful and intimate way of passing along life experiences. Stories can be shared in confidentiality, told to many individuals, or kept in secret; the common thread in each case being that it is the storyteller who has experienced a situation that has the power to choose to speak to it.

It would seem then that modern technology and living in a digital age would make storytelling easier since we now have the ability to share stories instantaneously. From live streaming, to tweeting to posting pictures, and videos, the internet has connected people around the world and serves as a compelling new platform to share stories. But, like many other aspects of modernity, a digital era has also created immensely impersonal and unwelcoming spaces. This has lead to critical discussions of misrepresentation (Rice et al 2015) and ethical concerns (Gubrium, Hill, and Flicker 2014) in the digital realm of storytelling concerning who is able to tell stories via this medium–and how.

The issue of power and privilege is still evident today, where people of colour and marginalized populations feel they cannot voice their stories but those sitting with power do. As a visible minority, I am aware that I will not always have power in a room based on the way I look. I am aware that people will not be willing to listen to my story and that I may not even have the power to share my story in certain situations. It has been this way for generations and can be traced back to power struggles created by colonialism, but, in the digital era it is important to recognize that this power struggle extends to online mediums. There is an inherent selectivity that comes with who is able to be a digital storyteller because such practices can reflect who, and what, are listeners more willing to listen to. Power and privilege can become dangerous mechanisms when it concerns intimate personal occurrences, such as health and death. Our world listens to stories most intently when it has some type of emotional pull: on one hand, it’s something like human nature. The pull of emotion is how we feel connected.


For example, in recent years the Black Lives Matter movement has been galvanized by social media and its ability to connect people around the world. Activists have relied on storytelling via digital media because it is an open forum for all those who are willing to listen (for example, see Chika Stacy’s spoken word poem on her experience as a Black medical student at the University of Toronto). However, the accessibility of digital media has also resulted in the viral dissemination of traumatic violence, such as racially-motivated shootings of unarmed Black men and women by law enforcement officers. From witness testimony, to dashboard cameras, to live streaming, raw and traumatic moments of fear and death are displayed for the world to see; as Nehal El-Hadi writes in a 2017 essay for The New Inquiry (“Death Undone“), the digital circulation of Black death brings viewers into “the intimate space of dying.” This presents a deep ethical conflict: whether further spreading a story to create more knowledge on social issues is compatible with preserving respect for the storyteller, or the person who is the subject of a traumatic event (especially in cases of wrongful death).

Now more than ever social media is being used as a catalyst to regain ownership of individual’s own stories and experiences. Being able to capture stories in real time by marginalized populations, especially when it concerns intimate situations like health and death, is the beginning of the attempt to humanize very real experiences. As Rebecca Garden writes (2015), this advocacy is at the heart of Health Humanities, especially in recent years. Humanizing health, suffering, and death can be incredibly difficult to do in medicine if people are reduced patients no more than the sum of their biological components. This is why digital storytelling is so important. It humanizes ‘patients’ and allows them to convey what their story and experience is from their own point of view.

As the work of digital storytelling organizations like StoryCenter and Project Re*Vision prove, people of colour and marginalized communities are attempting to regain their autonomy and identity by using these mechanisms to display their stories and their realities. It is important to give people of colour and marginalized people a platform where they feel safe to speak about their experiences. But it’s also important to provide additional support for digital storytellers because reliving trauma is itself a health concern and, as Garden argues, to “speak for” those who are marginalized results in an inauthentic story and a skewed perception on what root causes of the issues in the story are. It is therefore up to listeners to commit to seeking out authentic stories as counter-narratives to dominant perspectives and to listen to what they are saying their issues are. In order for people to properly heal, the root cause of the issues must be solved, and in order for that to occur as listeners we must be critical of the story we are listening to and the storyteller.

Here are some tips for recognizing counter-narratives and for being a critical listener in the context of digital storytelling:

  • Where was the story posted? (the source is sometimes indicative of who the storyteller is and who their target audience is)
  • Who is telling the story? What type of power and authority do they hold?
  • Is the digital storyteller representative of the story?
  • Why is the story being told?
  • How is the digital element of bringing people together being used?

Digital storytelling is still a very new form of illness storytelling. However, that’s what also makes it exciting. We’re living in an era where we can connect with people all around the world, we can share our stories of health and illness. We can connect with people about injustices that marginalized communities face and we have the power as listeners to distribute power away from those who have historically had concentrated forms privilege.