Reimagine and disempowering the stigma about death

If you had told me a year ago that New York would be hosting a series of events about death, I would have not believed you, and hell now, I would not have attended.  If you think healthcare is a difficult topic for me, or any of us, you can imagine how tough it is to talk about death. 

It’s the irony – we’re unified by many of our happiest experiences around relationships, professional successes and milestones, births and location changes, but also those toughest experiences involving death, grief and loss are a common thread in the tapestry of human experience. As much as stigma around mental illness is present, the stigma around death is ever present despite cultural explorations that seek to better understand and create coping mechanisms for it. This week long exploration has a very interesting mixture of activities, lectures, spaces of safety and artistic works – including presence from my alma mater program, the Transdisciplinary Design studio on End of Life at Parsons that I took that shaped my way of thinking about the topic.  I have no doubt this is a tough set of events to attend – I know that my losses in life of family members and friends have been tremendous moments of difficulty. Standing up and delivering an eulogy to my mum after her long battle with an autoimmune disease and an often absent health care system was traumatic.  I also know that we won’t move the needle forward to find ways for people to learn more about and cope with this topic if we don’t use the ‘sunlight is the best disinfectant’ approach towards disempowering and removing stigma about sensitive topics.  The one way I was able to get through the loss of a close friend of mine, Bill, from lung cancer was to do as he wished, and have a celebration with friends and family and music and photos; these kinds of events like the Reimagine festival take that kind of restorative energy that comes from community and make inroads to rethink death.  And I also know the way to get through the loss of my mum was to work on small artistic projects at the wake, where people could share their thoughts of my mum.

I’d like to think both my mum and Bill would have come to this if we were all in New York and able to.  They’d have seen the possibilities that come from rethinking our relationship to that which scares us them most, my mum the nurse especially.  And when I had picked my thesis topic, I had no intention of even tackling anything to do in healthcare largely because of witnessing my mum’s experiences in the healthcare system that didn’t understand her autoimmune disease and didn’t seem to know how to help her.  But the class I took on end of life helped me get over my fears and see that community and design and real world events is how we can dismantle our fears a bit, and disempower the fear from finding ways forward. If trauma comes from experiencing pain and developing wounds that may not heal from loss, perhaps community centered design explorations can add soothing ways to remake ‘healthier’ wounds that allow us new kinds of healing.

 

 

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