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Advocacy 101: You’ve Got What It Takes

Apr 10, 2023 |

If you have a limb loss or a limb difference and have considered testing the waters of advocacy, but you have reservations, you should know you already possess the most valuable tools. This was the first primary takeaway from Advocacy 101, the virtual workshop that began the series of Advocacy Forum webinars hosted by the Amputee Coalition in April. 

In celebration of Limb Loss and Limb Difference Awareness Month, the Coalition is coordinating a series of four events designed to help you elevate your voice. Advocacy 101 introduced people to this important work. 

Here are three things the people who attended learned. 

You need a story to tell.  

Legislators and others who are in position to bring change deal with complex issues. Data and charts are useful in some ways, but a personal story that illustrates the problem that needs solving is a simple way to communicate. 

“Doesn’t matter who you are, what walk of life you come from, you matter,” said Kyle Stepp, whose advocacy recently helped important legislation toward equitable insurance coverage advance in the New Mexico Legislature. “Every single one of us has a unique story to tell that is needed to be a part of educating people that are decision-makers about a broken system. 

“It paints the picture and the reality of the challenges and hardships that we face.” 

The truth is, as a member of the amputee community, you don’t have one story. You have many, and each could be used in different kinds of advocacy work. 

For more on the value of storytelling, sign up for the next webinar in the series in which Amputee Coalition Board Chairman John Register will discuss The Power of Personal Narrative on Wednesday, April 12 at 4 p.m. Eastern. 

You need knowledge. 

Peter Thomas is a bilateral below-knee amputee described during the webinar as one of the fiercest advocates for this community. He is an attorney, lobbyist, and advocate. 

He said doing your homework and knowing your stuff are fundamental to the process.  

“I don’t mean knowing how to be a smooth lobbyist,” he said. “I don’t mean knowing exactly what to say and not say. I mean the subject matter. When you’re going in to try to convince someone of something, know exactly what you’re talking about.” 

As someone with limb loss or limb difference, you demonstrate the capacity to learn. You had to learn to adjust, learn about your condition, learn to do it your own way. Learning the specifics of an advocacy issue won’t be hard. 

Actually, you need knowledge AND passion. 

The two are inextricable, according to Thomas.  

“There are so many advocates who know their stuff but they don’t care about it,” he said. “They’re a paid advocate or they’re someone in Washington who maybe has done [Capitol] Hill visits a little too long and is kind of bored of it. And you can tell that they really don’t believe what they’re saying and they really don’t, frankly, care. That’s a death knell.” 

Passion is nothing if not the hallmark of the limb loss and limb difference community. Many people find their primary motivation in advocating for others instead of themselves. They want to knock down the barriers that they had to climb over. 

And they are dogged, another quality that comes in handy in advocacy. 

“We have to never lose hope,” said Ryan Geddie, government relations specialist for the Amputee Coalition. “Regardless, if you lose five in a row, you have to believe the sixth one is the one that’s going to come out in your favor.” 

All of this shows that, just by being who you are, you have a full toolbox. 

If you want to get to work, now is a good time.  

“There are informed decisions and there are uninformed decisions,” said Dr. Dante’ Daniel, manager of public policy for the Amputee Coalition. “And an informed decision is consideration of all.” 

Are you connected? Become a community member by joining the Amputee Coalition today!