We are witnessing an extraordinary time right now. Our food allergy voices are being heard nationwide. “Everyone has a role to play,” shared Pro Football Hall of Fame and Superbowl great, Jerome Bettis, who also has a life threatening shellfish allergy. No stranger on Capital Hill and speaking to law makers, this former Pittsburg Steeler star shared a few simple, yet powerful advocating tips for us. You and I have an incredible opportunity to take these words of wisdom out for spin in support of the landmark legislation introduced last week: the Airline Access to Emergency Epinephrine Act (S.1972).
This legislation was brought to fruition by a coalition launched by Food Allergy Research and Education and including the Allergy and Asthma Network, Asthma and Allergy Foundation of America and Lianne Mandelbaum, Founder of No Nut Traveler, who is one petite woman with a big voice and mission. The bill calls for the US Government Accountability Office to create a national report reviewing how airline policies are accommodating passengers with life threatening allergies and would require airplanes to carry epinephrine.
You Are Important. This is our moment to speak up and work towards change. I invite you and your village (family, friends, co-workers, etc), to reach out to your representatives in congress and ask for their support of S. 1972. Visit FARE’s Air Travel webpage for details on how to get involved.
You Can Do It-really. An unlikely advocate, Jerome started speaking to law makers years ago with the Allergy and Asthma Network after he experienced an asthma attack on the field. “Now, I’m back talking about allergies,” Jerome explained. Who would have thought a football player would become a vocal advocate? If he can do it, so you can you!
Need to Know. “I came to realize all the lawmakers are human just like us. They are effected just like us. Sometimes they are as ignorant to the information as I was. It is up to me to create that understanding and it is up to me to educate as best as I can”, Jerome detailed as to why he speaks to legislators. His passion helps to alleviate nerves when speaking to law makers.
Share How You Are Effected. Jerome believes in the power of our own stories, “so many times we try to give all the numbers (stats) and how many times we’ve been effected (school, community, etc). Just tell your story.” Let the national organizations share the hard facts and statistics and only share those if you have vetted information in which you can leave behind your sources. My favorite resource to give to law makers is FARE’s Facts and Statistics Download.
Be who you are. “I think it (your story) hits home a lot more than just numbers. Speak from the heart. Tell them (lawmakers) how you were effected and how we can help make change. Talk about how other people are effected too”. Jerome explained how speaking to legislators gets easier and as our message becomes a lot clearer when we simply share our stories.
It almost sounds too simple, right? I believe that sometimes our culture (and myself) over complicate things in our quest to do the right thing. Maybe it is just a matter of stepping back and trusting in ourselves? You are on a unique journey that others can’t imagine or understand. Your words, photos and stories help paint the picture, challenges and needs of people living with life threatening allergies.
Your voice is needed and is important to make change.
As Jerome explained, legislators are human too. Let’s all help them understand the need in this country for good airline policy that will support, accommodate and keep people with life threatening allergies protected in the sky.
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One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..