Advocacy Potpourri

Why Change Happens – And Why It Doesn’t

In light of Nelson Mandela’s passing, I wanted to share two recent anecdotes from my life that illustrate why needed change does and does not occur.

Last night, I attended a township zoning board meeting to voice my opposition to a proposed zoning change adjacent to my neighborhood. When the meeting began, not a seat was vacant, and for the next two hours, I listened as my neighbors took the podium and described their affection for our neighborhood. More so, how they feared this proposed zoning change would negatively impact our quality of life.

It may sound corny, but as they spoke of mothers jogging through the streets with strollers (we have no sidewalks), kids riding bikes and trick or treating, and dog humans picking up their pooch’s poo, I got a little choked up. I was proud of my neighbors for realizing how special our modest little corner of the world is, and even more proud they took time out of their busy schedules to show up at a municipal meeting to fight something they viewed as a threat to it. As opposed to what we read, see, and hear on a daily basis, it was a great demonstration of what democracy is supposed to be.

In contrast:

I’ve been doing this living donor advocacy thing for five years now. During that time, I’ve developed relationships with a handful of people I rely on for knowledge, corroboration and advice. Publicly however, I’ve always been pretty much on my own. In the last year, a prominent living donor related list-serv was shuttered with next to no advance warning. Many members were shocked, angry and betrayed by this move, but the sponsor of the list-serv was unmoved by their protests*. Anyway, there was some talk of someone else picking up the mantle and relaunching the list-serv. I volunteered my server space but was emphatic that I wouldn’t and couldn’t run it alone. A couple of people agreed to help me out.

Months later (you had to know that was coming, right?), I was approached by one of these folks, asking about the status of the list and had there been a lot of subscribers? I informed her I’d been very busy (training people for the election = $$; acting in a theater production, etc), and that I’d had no time to promote the list (thought it was set up). I also told her I was exhausted from being a five-year, one-woman show and I needed her help.

Her response: Well, if you’re tired, maybe we should drop it.

Instead of saying, “Hey, I believe this is an important project, tell me what I can do”, this person (in essence) said: Oh. Well, if you’re not going to carry the burden then I guess it won’t happen.

This, folks, is why things don’t improve despite people’s proclamations that they should. Because theory and philosophy are easy, but work is dirty, and icky and frankly – work. And gee, don’t I have enough on my plate with my family/job/dog/vacation/bills/etc? I mean, aren’t there people who get *paid* to do that sort of thing???

No. No, there are not. I’ve been here for five years with every cost coming out of my threadbare pocket, and a donation button on the website that no one has bothered to click. A simple request of “Hey, help me get this email list-serv you want so badly off the ground” is met with “Uh, can’t you do that?”

So the next time The System (whatever system) bites you in the ass, ask yourself: When was the last time I did something to actively make the world a better place?

Then roll up your damned sleeves and make it happen.


*When the National Kidney Foundation tries to tell the world they care about living donors, remember this.

2 replies on “Why Change Happens – And Why It Doesn’t”

I am not connected with living donors network in any way. I will not even be accepted as one. But I am tired of the way we prioritize things. Today, by chance, I came across a story of an altruistic living donor in GB who donated his kidney to a boy. And I wanted to know more about this man, to post his story on my FB. Today FB ids full of new pages discussing the rights of a public figure who said something offensive and got suspended from a show. In the meantime, it took me quite a while to find pages dedicated to living donors. Your page says, “no hero-worshipping”. But if we do not worship altruistic people, we end up dedicating time of our life to people even not worth mentioning. And then we complain that the society has become too egotistic.

Reality tv stars aside, your intention to post a story about one living donation is exactly what I mean by hero worship. The only stories perpetuated by the media (planted by the transplant centers) are those that promote living donation, and provide a recipient with a happily-ever-after.

When was the last time you read a mainstream press article about the 4.4 living kidney donors that die every year in the US? Or the 20% who experience hernia, intestinal blockage, pancreatitis, nerve damage, or adrenal dysfunction? Any mention of the 20-30% who endure depression, anxiety, anger, grief, and/or PTSD as a result of their donation experience?

The transplant system as we know it was built around the needs of the would-be recipient and meant for deceased donor organs. Even though the first living kidney donor transplant occurred in 1954, we had NO national standard of living donor care until this year, 2013 (and those are pathetic and full of holes). We have NO comprehensive short or long-term data on living donors’ health and well-being. And the info trickling in from other countries with LD registries is not great.

“Worshipping” living donors ignores the near-60 years the transplant industry has had to properly evaluate and care for living donors, and has subsequently failed to do so. It avoids the reality that the average age of end-stage renal disease onset in the US is 64.4 years old, that 44% of kidney failure is due to diabetes and another 26% because of hypertension (USRDS). Stories such as you cite distract everyone from the fact that transplants are not cures, and the vast majority of recipients will need multiple transplants to achieve a normal lifespan. Consequently, there will NEVER have enough kidneys to meet the so-called need. The only way to resolve the problem is through robust prevention and treatment programs.

But that doesn’t make for a feel-good headline does it?

PS. All living donors are altruistic, not just the ones that donate to a stranger and end up being used by their transplant center as a PR stunt.

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