While most bloggers around the world wait for US president Barack Obama to make a statement about receiving the Nobel Peace Prize, there are in fact other urgent global issues that remain – to the harm of so many – ignored.
Tomorrow marks World Hospice and Palliative Care Day. It is too easy to simply roll one's eyes at the never-ending proliferation of special ‘days’ that mark what seem to be a greater quantity of activist causes than we have days in the year. Worse, we can easily fall into the trap of believing that a single day of recognition will automatically lead to greater awareness, better policy, and social change. But when it comes to the movement for palliative care – that is, organizations dedicated to relieving suffering and improving the quality of life for people facing life-threatening illness – there don't seem to be many other options to spread awareness. With very few exceptions, mainstream media has shown no interest in reporting on the rights and realities of individuals who live with life-threatening illnesses. In fact, Google News shows a significant decline in coverage about palliative care from 2006 – 2009.
It is appropriate, therefore, that this year's theme for World Hospice and Palliative Care Day is “Discovering your voice.” Rather than relying on traditional media to pick up the cause, hospices and individuals around the world are encouraged to submit their own stories using digital media. They can submit their stories directly on the World Hospice and Palliative Care Day website. So far stories about palliative care have been shared from Portugal, Brazil, India, Malaysia, Malawi, Argentina, Belize, Nigeria, and beyond.
A significant challenge facing most hospices that would otherwise like to share their stories, however, is that their staff, patients, and volunteers haven't been trained in digital media production or even basic internet usage. It is for this reason that I took a scenic train ride from the Romanian capital of Bucharest to Braşov, where Hospice Casa Sperantei – a leader of palliative care in Romania and Eastern Europe – is training its staff how to use new media to 1.) spread more awareness about the daily realities of palliative care and 2.) tell the stories of patients to enable them to leave behind a legacy of their lives.
Last month Juhie featured excerpts of some of the testimonials from patients at the hospice. As you can see, most of the testimonials focused on the diseases which afflict hospice residents. In this workshop I wanted to emphasize that the testimonies and stories recounted on the project blog could be both fun and informative at the same time.
We decided to collaboratively create a storyboard and produce a video to tell a story in a creative way. After some deliberation the staff decided that they wanted to produce a farewell video for Iulia, the outgoing volunteer coordinator who is headed to medical school.
Later in the day Iulia, who has been involved in Hospice Casa Sperantei's blogging project, told me about some of the challenges they have been having in getting residents at the hospice to share their stories:Still, the hospice staff is dedicated to moving the project forward to help spread more awareness about palliative care in Romania, and to help preserve the stories and memories of their patients. Anna, who is featured in the video with Iulia, will be taking over the role of volunteer coordinating and says that she is committed to the project.