The Importance of Crafting and Sharing Your Story

#papafa #shareyourstory

In last week's blog; How to Effectively Meet With Your Legislators - Tips Directly From Your Elected Officials, we learned valuable tips directly from a number of PA State Legislators. The article showcased the idea that your elected officials are normal people and they want to and need to hear from you; their constituent. This week we wanted to dive deeper into how you can craft your story to advocate for your child, and just how impactful that story can be. We sat down with Erin Gabriel, a Pennsylvania mother of 3 who has a lot of experience sharing not only her story but helping families across the state share their stories in an effort to bring eyes and ears to important issues, as well as act as a catalyst for real systemic changes.


"I have 3 kids with disabilities. All of them have an autism diagnosis and my youngest daughter is deaf and blind," said Gabriel. While Gabriel has always had an interest in politics and followed it regularly it wasn't until former governor Tom Corbett was trying to change Medicaid (a change that would have seriously impacted her entire family) that she sprung into action, and began to attend meetings and started her journey with advocacy. She attended a meeting where a number of parents got up to speak about their experiences raising a child with autism. "They were all talking about their struggles and making it seem like raising a child with autism was very tragic. I had my kids with me at the time because I had no babysitter, and I knew they were listening to all of these parents speak. I had never spoken before but I had to get up and say something. I didn't want them to think their lives were tragic, I wanted them to hear their lives had value. Instead of focusing on the hard stuff, I said we should be investing in these kids because they can do so much."

This idea of recognizing the hardships while also celebrating what is great about your child when telling your story is something that Gabriel has carried with her throughout her advocacy career. After that meeting, she became even more involved and joined a number of Facebook groups, one of them being Little Lobbyists. Little Lobbyists is an organization whose mission is to; "Seek to protect and expand the rights of children who have complex medical needs and disabilities through advocacy, education, and outreach." The organization began in 2017 and now has over 7,700 Facebook likes. They recognized Gabriel's activity on the page and promoted her to a leadership position.  Below are Gabriel's answers to our questions surrounding sharing your story with your legislator, and making the most of a legislative visit.


Why is it important to share your story?

"It changes the entire dynamic of a meeting. Legislators spend their days meeting with professional lobbyists and that is much less personal. It is much harder for them to say no to you. It is hard to hear about a kid in a wheelchair using oxygen and say 'Their healthcare is not important and I will not fight for it.' Having that face is very effective. Also, when I say your kid I don't just mean a young child, they are your kid forever."


How much of their story should you share?

"It depends on who the meeting is with. If it is a large group keep it short and sweet. Don't go into details you aren't comfortable with. Don't say anything your kid would be embarrassed by. Anything you share with a legislator is a piece of public information. Generally, the shorter the better. A minute is awesome or 2 minutes, it just can't be the entire meeting. You can always circle back when talking about the policy itself. You can go into specifics later in the meeting. Keep in mind at some point they may cut you off so you want to make sure you get in the important stuff at the beginning ."

Should a parent feel discouraged if they meet with a staff member?

"In many cases, I have found it is better to meet with staff. Usually, they will set you up with the staffer that is an expert on the topic you are there to address. They also have a little more time to understand your story. If you are trying to get a bill or policy passed sometimes they can be a gold mine. It is always great to meet a legislator but sometimes when you're meeting with the staffer the legislator may poke their head in, and come and sit down with you. In some cases, the staffer is the one writing the actual legislation. One time we had a meeting with a staffer who was writing a Medicare For All bill. She had a line in the bill and I said 'I don't think that would work well for our family' and right there she took it out of the bill in front of us."


What should parents do if they realize their legislator is not someone who has a history of supporting their cause?

"Still meet with them, it is even more important. You may not change their mind. You know how they're voting and they know how their voting is impacting your child. Give them the face they are voting against. I once asked my congressman to not vote to repeal the Affordable Care Act (ACA) and he shook my hand and promised me he would protect my child's healthcare, and he did not. I told other voters in my district that he knew better and he promised me he wouldn't and he did. We ended up getting a congressman elected that would protect it."


Why is the family voice important?

"Family voice is hugely important. It is kind of like the canary in a coal mine, every policy in every area impacts individuals with disabilities first but it will affect everyone else eventually. Transportation, healthcare, education, etc. ultimately it affects everyone. It is important and they need to hear from us."


Should parents bring anything to leave with their legislators?

"Bring a picture of your child if your child is not there, and your contact information. We have families fill out a story form with pictures, your child's first name, their age, a picture of them, and a little bit about them. What makes them awesome is always how we start out. For example; this is Abby she loves ____,. We print them out for them to leave at the end of the visit. Don’t make it so long they won't read it."


What if a parent is nervous to set up the meeting?

"Don’t be. Typically you meet with teachers and therapists. You know how to advocate for your kid, this is easier. You are talking with someone who works for you. Don’t ever forget they work for you. Tell them what you need. You can vote them out if they are not doing what you need them to do. They want to make you happy."


How has COVID impacted your advocacy work?

"It has dramatically impacted the way we advocate. Typically we are on the hill and we haven't been able to do that since March. There are a lot of Zoom calls from our dining rooms with senators. Everything has gone virtual. Talk to them. Leave them a message. We are emailing back and forth with multiple legislators and their staff about COVID relief packages, money for healthcare, money for home healthcare, more money for special education, access to voting. It has been a lot of behind the scenes work. My kids are begging to go back to D.C., and once it is safe we will be back out there."


Gabriel has an abundance of information on preparing your story and having an effective meeting with your legislator. The story that you prepare does not have to start or stop with legislative visits. We have created a tip sheet on How to Craft Your Story To Make an Impact. Here you can see that the tip sheet breaks down tips for general story crafting and then tips that are specific to sharing your story with your legislator.


This entire blog has been focused on just that, capturing and sharing families' stories. These stories showcase personal struggles, and triumphs, bring awareness to issues and help to unite our readers. There are few things more valuable than your story. In order for you to get your thoughts and story organized we also created a "Crafting Your Story - Elevator Pitch" worksheet.


An elevator pitch is just a short version of your story that you have memorized and ready to go whenever you need to advocate for your child. You never know when you could find yourself in a meeting room, grocery store, or even an elevator, with someone who can learn from your story and use it to help make changes that would benefit you and your family.


Utilize our Elevator Pitch worksheet here and plan out what you would say if the opportunity strikes for you to advocate for your child and family.


Over the past two weeks, we have covered advocacy and meeting with your legislators. Do not let this intimidate you. You are no stranger to advocating for your child and this is no different. Continue to have yourself heard inside and out of the polls and speak up for the issues that matter to you and your family. One thing is for sure; a parent's love knows no bounds, and your story and voice matter.


Are you interested in learning more about how to tell your story? Join us Thursday, September 3rd at 9:00 pm for a webinar focused on How to Tell Your Story to Make an Impact.


PA Parent and Family Alliance

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