What could have been one of the most participated in MET UP virtual die-ins yet, turned out to be abysmal. A big, fat nothing burger. Where were all the advocates and supporters of metastatic breast cancer Saturday? Really, I’m asking, where were you? How much time does it take to participate in something that you can literally do from the comfort of your home? No travel required, no expenses incurred. Just a few minutes of your time and the effort to click share and write a hashtag.
Even if you have the perfectly reasonable excuse that you were busy and had plans on a lovely Saturday (which it was in most parts of the country so who could blame you for enjoying it) you could have planned ahead. You could have taken the photo ahead of time and scheduled your post. But instead, the participation that can be seen publicly on the three main social media platforms (Facebook, Twitter and Instagram) were all but barren.
In a nation that loses over 40,000 people to this disease each year (about #113everyday) and a huge online community that professes its solidarity and conviction to stand tall, speak loudly and demand change, almost nothing happened. I kept hoping more images would appear as the day went on. But then night came and brought with it disappointment and to be honest, surprise. Where were all the people?
In comparison, previous die-ins have garnered much more participation. Photos would stream across social media, filling our feeds with unity and hope. It united us in our common cause, here at home and abroad in other parts of the world. But not this Saturday.
Facebook: 12 publicly shared photos with the hashtag #SpeakOutDieIn.
Twitter: 13 publicly shared photos with the hashtag #SpeakOutDieIn.
Instagram: 6 publicly shared photos were shared with the hashtag #SpeakOutDieIn (all of which were 6 of the same people who shared publicly on Facebook as seen above).
What could explain the lowest participation we’ve seen thus far in three years of this event? Was it a result of poor planning? Not enough advertising or build-up to the event? Are people embarrassed to post such a photo of themselves for all to see? Do early stage patients feel awkward about looking dead in a photo? Are we tired of trying and being met with silence, therefore resigned to doing nothing because nothing ever changes? Did we need more than just MET UP encouraging participation? Where were all the organizations that MET UP supports? Why didn’t they advertise and back this event? We did.
What is MET UP doing to reach across the divide between metastatic patients and early stage patients so that they aren’t just preaching to the choir? The vast majority of breast cancer patients are diagnosed early stage and are afforded the essential time needed in a fight like this. Why aren’t they building that support, tapping into an enormous group of people who can carry the torch far into the distant future? How can we help them do that? How can you help them do that? Lives are on the line.
It’s Time To Double Down
Whatever the reason for Saturdays lackluster event, it needs to be addressed, because there are going to be more of these events, and if you think for a moment that MET UP doesn’t serve you directly or indirectly, you are mistaken. If MET UP thinks for a moment that they can do this without building a community of early stage advocates then they are going to fade away as quickly as they blossomed. I haven’t seen any recognizable effort to build that community and solidarity. It’s essential to build the social media presence because, as is evident, that’s the way people connect and communicate and participate.
If you think retreating back into the dark shadows of the breast cancer community is best for those who are dying, think again. That might be you one day. Early stage women and men need to back this effort. If they don’t, there will be no one left to advocate because all the dying will in fact, be dead. And then who will come stand up for you, rescue you, scream from the rooftops for you when one day that dying person is you?
October Is Looming
There are five months until October 13th when once again, MET UP will host the 3rd annual die-in event in Washington, D.C. Will it be a bust? I hope not, but if steps aren’t taken to address these issues, it very well could be. One thing is certain, The Underbelly will be there advocating fiercely for truth, awareness and change and we will continue building community across all stages and addressing all the ways breast cancer intersects with our lives.
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