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Virtual Die-In Turnout: A Virtual Disgrace

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.

Falling Short

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).

But Why?

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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  • A creative introvert who mistakenly thought she was an extrovert. A seeker of sorts and purveyor of "me toos". When she's not writing - she's loving on her peeps and furbabies. Friendship, nature and a good antidepressant are her lifesavers.

  • Show Comments (4)

  • Stacey Hall

    Wow, so sometimes being unduly hasrh might be the way to go, but I’m sorry it was not on my awareness radar Saturday. Someties some of us don’t feel well enough to even lie down on the floor with sign that is clearly and vitally imporant. Sure bet I support METUp, Meatvivor and all the hard work and effort that goes into getting our voices heard. Right now there are so many other voices clamoring for attention it’s hard to focus over all the din. But to shame people who did not participate is plain wrong. I’ll give, I’ll wave the flag and I’ll really die for the cause, I’ll be one of those 113 soon eough but I am not going to let you shame me for not standing up for my sisters, cause I do, maybe not as publically as you’d like.

    • Melissa McAllister

      It’s important that readers understand that no one is being blamed. Important questions are asked. And possible reasons are explored. Take the entirety of the piece into consideration (not just the first paragraph). This is an opportunity to learn from and make positive changes as a result. I’m listening to and taking in all the responses to this article. We as The Underbelly are listening. We want to be part of the change. We appreciate your support Stacey, but not once did I shame anyone. I simply asked, where are all the people who profess their commitment and support to this particular style of advocacy. We all know there are plenty of people who do and they were absent. I’m not asking why every single metastatic patient didn’t participate. I think this distinction was lost in translation immediately. Thank you for your feedback. I’m listening.

  • Cathy S.

    Personally, I don’t post photos of myself on social media. Because of my job, I receive death threats from violent felons. I don’t need them to be able to provide their friends with a handy-dandy pic to help them identify me.

  • Kim

    Actually I had committed to atttending a wedding reception way before I ever heard about the die in. As a stage 4 breat cancer thriver, I wanted to participate but I knew the times conflicted. And maybe it was chemo brain but it never occured to me to prestage a photo and post later at the appropriate time….sorry!!!!!!!!!

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