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“Real conversation and reconciliation”

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I read an interesting quotation from a recent interview with Hillary Clinton.  Per Mashable:

The former Secretary of State also laid out some lofty expectations for the future of social media, an area she hopes will mature over time. “We have a lot of people communicating, but they’re not listening and they’re not looking for common ground that they could occupy together,” she said. “It is a fact of social media right now that too often people use it as a weapon instead of an opportunity.”

Clinton added that she hopes people will someday use social media for “real conversation” and “reconciliation,” and not just for arguing and bickering over differences.

Brilliant.

I follow many OPOs and non-profits related to donation and transplantation across social media. Here are  the things I have noticed:  Everyone has competent people tweeting/posting. That’s great! No big hiccups (though, if you are cross-posting your Facebook status updates as “fb.me…” links to Twitter, PLEASE STOP–you know who you are).

Yet, I notice a serious deficit. Those of us who run social media accounts are not always listening and, even more bothersome, not engaging.

How many times in a month does your OPO post the same “myth” or “fact” statement, and get zero favorites, comments, retweets?

A lot. I know, because sometimes I count. The answer to that question is A WHOLE LOT.

If you and your organization want to influence and persuade people who are NOT registered, what do you need to do? Do you repeat the same posts and hope against hope that those posts somehow mysteriously, ephemerally, leave the circle of your die-hard supporters and make it out into the wild world beyond your followers?

Is that working for you?

Are you getting the results you want as you post, re-post, and re-re-post the same information that is NOT getting likes, shares, re-tweets, and comments?

Or–

Could you post to inquire, discuss, and engage with the people who ARE NOT in agreement (yet) with donation and transplantation?

Could you listen to their reasons for not registering, and engage in civil and productive discourse that might lead to more registrations and more awareness?

Could you seek conversation and reconciliation by engaging OTHERS, not just your die-hard, supportive audience?

I have described the Twitter experience (on more than one occasion) as millions of people shouting in a room with no one listening. BE THE FIRST ONE TO LISTEN. That would be an innovation in social media for OPOs! Start actual conversations on Facebook, Twitter, Instagram, Pinterest, Alignable, etc. If you ask a question, respond to every response! If you want real feedback, ask for it and use it and engage with it.

Actual conversations, where the dialog goes both ways, would be a massive change for our field. Instead of thinking “I posted at optimal frequency for all of our social media platforms!” (<—please do not reach for goals like this), try “I posted/replied/engaged XXX number of people who are NOT generally engaged with us today!”.

Are you starting conversations, or shouting in a loud and crowded room? Can you be the first to listen, and, in doing so, reconcile?

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Never judge a liver by its…cover?

Livers.

People need them.

Sometimes they don’t work.

That’s another place where donation and transplantation can save lives.

I can’t lie. Every time I meet a liver recipient, I get this tight, cringe-y feeling in my chest:

What terrible things have random people said to them about their liver transplant?

I have not met a single liver recipient who did not have at least one story to tell about someone judging them for needing a liver transplant.

“It’s too bad you couldn’t stop drinking.”

“How long were you an alcoholic?”

“Yeah, my brother in law is an alcoholic too. I bet he needs a liver one day.”

“Don’t you feel guilty about drinking so much you killed your own liver?”

First, the facts from Medscape:

The most common indications for liver transplantation in the United States are hepatitis C virus (30%) and alcoholic liver disease (18%). Other indications include the following:

  • Idiopathic/autoimmune liver disease (12%)
  • Primary biliary cirrhosis (10%)
  • Primary sclerosing cholangitis (8%)
  • Acute liver failure (7%)

  • Hepatitis B virus (6%)
  • Metabolic liver disease (eg, inborn errors of metabolism) (3%)
  • Cancer (3%)
  • Other (3%)

Biliary atresia is a common indication for liver transplantation in pediatric patients.

People like to put on their judgy pants when it comes to liver transplant, but, as you can see from the above, 82% of liver transplantation are a product of SOMETHING OTHER THAN ALCOHOLISM.

Let that sink in for a minute. Roughly 8 out of 10 people that you encounter who need or have received a liver transplant are not in that position because of alcohol.

Here is the other thing. If you are an alcoholic who needed a transplant, you still deserve your transplant. I don’t care why you need a transplant. I care that you are/were suffering, and that you need help, and who in the world am I to judge your life choices? I am overjoyed when anyone on the list is saved by donation and transplantation.

That said, I know it upsets many of you when people say things that make you feel judged. I can help. Here are some of my suggestions for what to say when people make assumptions about you or the one you love:

  • When people make assumptions about my life, I feel sad. I received a special gift because I was very sick. 82% of liver transplants are caused by other illnesses. Would you like to know more about my wonderful donor, and how I honor my gift of life?
  • Goodness. This feels upsetting. My infant daughter was one of the 82% of people who need a liver transplant for illness other than alcoholism. When people ask me if my tiny daughter drank alcohol, I feel really sad that there is so much misinformation about donation and transplantation in our community. Can I tell you about our wonderful donor family?
  • Gee….I feel uncomfortable right now. Are you asking me what caused my liver disease? Because I can tell you about the illness that made me sick, and how donation and transplantation saved my life.
  • I have made many mistakes in my life.  I am now sober and walking a healthy path. Would you like to know more about my hero, who gave me a chance to be sober and live a life I never would have had otherwise? She’s the person I would like to honor in this conversation.
  • Gosh, I guess this is why it’s tough to judge a book by its cover. 82% of liver transplants are caused by issues other than alcohol abuse. Would you like to know more about how donation and transplantation saves lives?

Let me know in the comments if this post helped you.  Do you have questions or suggestions–email me or comment below! Special thanks to my wonderful trainees Janet, Cathy, Debie, and Wes for their ideas and input on this post.