This guest blog for SurroundHealth was written by Tammy Pilisuk, MPH. Tammy has been a health educator for over 10 years, and prior to that worked in program planning and health policy. She has expertise in aging and disability advocacy, immunization education, and writing and editing to meet the needs of diverse audiences. Tammy loves creating and sharing innovative ways to craft health messages–especially incorporating the power of personal stories.
Ever had a health advocacy training? The basics are easily explained: know your issue(s), stay focused on key points, have a few facts, know what the committees the policy maker sits on, tie to a constituent concern, and leave a written leave-behind piece. For more quite good basic training visit Families USA.
So, are you ready? I’d say, not quite. Don’t forget “why” your issue is important—and particularly what difference it will make to real people.
Recently, I had the privilege of attending a statewide policy conference sponsored by the National Multiple Sclerosis Society. I have been a volunteer with this organization for over 20 years. And you might think I’d feel jaded about attending yet another advocacy event. But that’s not the case. I find it very grounding. Let me explain.
Professional, Personal, or Both?
I have training in health policy and find an incredible personal satisfaction in helping others advocate effectively for issues that impact their lives. For years, my passion was based on my principles to affect change for social and health justice. I also have a personal connection: my mom has MS. As her condition has substantially worsened, I find myself straddling two roles: health policy expert and affected family caregiver.
It’s no surprise that many advocates find themselves involved in an issue because it affects them personally. When you’re working with others, whether or not you share their same experience, it’s important to capture authenticity in how you’re supporting their cause. Like each of them, I have a story to carry my advocacy from abstract facts and policy proposals to the realm of real life.
I do often refer to my mom when I’m making a point, like on this public radio opinion piece. And, I remind others that while policymakers can pick apart your budgetary requests, they can never argue with your story. This is where you bring the head and heart together.
Life Experience: A Rich Source of Inspiration
Whether or not you, yourself are impacted by an issue in the same way that others might be, it may be possible to dig into your life experiences to convert an abstract policy “pitch” into an impassioned plea to help right a critical injustice.
At the national level we see this being done to good effect. Think about how political candidates often use one person’s story to illustrate how their election will make a difference in a real person’s life.
Thinking on Your Feet
Here’s something that came up when I met with a legislative aide to talk about a pending health care bill. The bill was to limit the number of times a health plan can refuse to authorize pain medications for individuals with chronic pain, despite what their physician prescribes (also called “fail first.”). I was prepared with talking points. Making someone go through five medication “failures” before the health plan relents and agrees to honor the physician’s prescription is inhumane. People with MS often have chronic pain. Chronic pain also leads to depression, isolation, and unnecessary suffering.
Good solid arguments. But the young legislative staffer I visited wasn’t so impressed. “Bottom line, you’re asking for a max of two failures, instead of five, right?” he said. But than he added: “We like to do things incrementally at the Capitol. How about 3-4 fails?”
When encountering a seeming callousness to suffering during an advocacy encounter, this is an opportunity to get personal. Here’s the approach I used.
Spilling My Guts
I talked about myself. You know, I explained, I once had a slipped disc. One time I was getting into my car and became suddenly paralyzed by excruciating nerve pain in my back. I could not move enough to pull my left leg into the car. So there I sat, very still silently crying and wondering what to do. I was quite frankly scared out of my mind. I’m so lucky that after about 20 minutes I was able to get my leg inside the car, drive the 5 blocks home and get on with my life.
The thing is, some people with MS have pain that just won’t stop. Their nerves are out-of-control. It’s not just something that stops after a while. My experience with pain was intermittent and eventually got better. It’s hard to imagine how I would have coped for weeks on end with the debilitating pain I had that day. If there were a medicine that could give me relief, allow me to go to work, not lose my job, it would make ALL the difference if I had to endure a maximum of two pain med fails.
The Goal of Connecting
It sounds like a small difference in the abstract, but wait until you or someone you love has to live with pain. Every extra day or extra “medication fail” is a very big deal. And suddenly, I had the legislator’s staffer’s attention.
Over the years, I’ve been in advocacy meetings where the issue got emotional and I cried—even the legislator teared up. You may or may not “win” the vote you’re seeking, but once you’ve shared that authentic moment of connecting, in the end, you’ll know that’s what he or she will remember.
To get more tips, resources and information about effective advocacy, and to hear what other health professionals have to say on the topic, check out SurroundHealth, a free online network for health professionals.