Holiday Advocacy and Awareness

I get it. You’re tired. You’re exhausted.  Between Devos, #SavingMedicaid, ESSA, the latest tax cuts and all the in between, it’s been a tough year.  Many advocates are feeling like no one in listening.

It is cliche’ but remember: advocacy is a marathon and not a sprint.   Even in the middle of what many perceive as hazardous legislation, you must put on your best advocacy boots and people skills, go out and build relationships with people you agree with and people you disagree with. In other words, you have to do what we tell Rachel in tough times, “Suck it up buttercup!”

I believe that positive public awareness and all kinds of advocacy are intricately intertwined.  It is an ongoing process. Simply stated, it is continuing to tell your story and build relationships. Advocacy is not limited to elected officials though. Just to name a few, it could mean doctors, coaches, teachers, or business leaders. The holiday season provides you with a perfect but lasting opportunity to share your story in a very meaningful way.

A very simple act of awareness and maybe advocacy is to simply send your Christmas/Holiday picture card and your annual Christmas/Holiday letter to the healthcare professionals who see your child on a regular basis. For us, that is the pediatrician, ENT, eye doctor, dentist, orthodontist,  and  ob/gyn.  DO NOT FORGET THE OB/GYN. If you don’t do a picture card, consider dropping a card with a picture of your child and a little update about what is happening. I know some of you had horrible birth experiences. Even a better reason to keep this life in front of them.

We moved from Memphis almost ten years ago, and we still send cards to Rachel’s doctors in Memphis. One doctor even had the entire staff and all the doctors in the office watch Just Like You – Down Syndrome. My ob/gyn’s office called me once and said their staff always honored their doctors with a donation to a favorite charity. They wanted to do our Down syndrome group. Maybe not because of the Christmas card but it didn’t hurt.  One doctor joined Rachel’s Buddy Walk team.  He came running up just as we were taking our team picture and jumped in the group and walked with us. The pediatrician, ob-gyn, and ENT offices all sponsored the Down syndrome walk.  When we have an office appointment, I sometimes see our card tacked up on a wall.  A few years ago, I was even contacted by one office inquiring if they could use Rachel’s picture in a brochure.  All of these are avenues for individuals with Down syndrome to be portrayed just like everyone one else.

2012 Christmas Card

Then, send the same thing to your legislators and their staffs.  US Senators, US Representative, Mayor, State Legislators and maybe even a school board member. Your list may differ from mine but again, it is a way to touch these people.

If you don’t send cards or you do e-cards, send it. It can’t hurt.  Make a point to send the staffers a thank you email or note for their service to constituents.  If you have the time, you might even drop by the office.

Just like you invite elected officials to your walk, consider inviting elected officials to events sponsored by your local affiliate group. Even if they don’t come, it is a piece of the relationship building.

Finally, I’ve shared this story before but I’m going to do it again.  I once invited a local State Representative to come to our Down syndrome walk. He came and shortly after we met to discuss legislation. We invited him to our organization’s holiday event.  He couldn’t come but he wrote me a note that I still have. It said, “Thank you for educating me. I have learned from you and your family. I wouldn’t know if you didn’t tell me. So thank you.”  Trust me when I say that someone has your legislator’s ear and the ear of those in many other leadership positions. If we don’t tell them the pros and cons of a bill or a policy, someone else will be sharing something. It may not be what we want them to hear.

It’s not too late this year. Happy Advocating!

PS – Sometimes you do need to take a break to re-charge. The holidays may be the perfect time for you. Don’t forget to take care of yourself because the marathon will always be there!  Happy Holidays.

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