StoriesOct 16, 2020

Donna Jones

Every day, the government makes important decisions that can greatly affect the lives of people with #SpinaBifida. Therefore, knowing how to advocate for yourself or your child is crucial. We must speak up so that legislators know that we exist. How else will they know what our needs are? Donna Jones, an adult with Spina Bifida, has shared why she decided to get into advocacy, how it has shaped her into the person she is today, and tips on how you can join her in supporting SBA’s advocacy priorities.

“I got my start in advocacy in 2007, after going on an adaptive ski trip in Argentina. While there, I met a young man who became disabled after being struck by a stray bullet. That event, caused him to become an incredible advocate and mentor for people with disabilities. He didn’t want anyone to give up just because they have a disability. I left Argentina wanting to have the same kind of effect on my community that he had on his.

As people with Spina Bifida, we learn very early we must advocate for ourselves every single time we walk in a medical setting. On a national level, decisions are being made too often that have a direct effect on our medical care. Certain decisions can sometimes have catastrophic effects on our access to medical services or equipment. For example, during Teal on the Hill this year one issue we discussed was Medicare’s plan to put manual wheelchair accessories through the competitive bidding process. Can you imagine how much harder it will be for us if Medicare deems certain parts of our wheelchair uninsurable under their standards? We are so lucky that we have an organization like the Spina Bifida Association that keeps a close watch on the legislative issues that directly affect us and keeps us informed on how we can engage in the advocacy process. But, it’s important that we do our part as well.

People don’t realize how quickly and easily they can reach out to their Members of Congress. Let them know that you’re a voter in their district and you want them to support more funding for the Spina Bifida Program at the CDC. It takes less than 5 minutes; just use this tool on the Spina Bifida Association’s website. If you aren’t reaching out to them, how will they ever know we exist and what we need? There are many health non-profits and similar causes that apply to the government for funding, so, we have to keep our voices loud and clear.

On April 9, 2019, I was invited to share my testimony on my life living with Spina Bifida before the House Sub-Committee on Labor, Health and Human Services, Education and Related Agencies. Leading up to the event I was so excited. It was inspiring to see the legislative process at work. I’m a former Capitol Hill staffer so I know how important these meetings are. They’re where everyday Americans, like myself, have the opportunity to directly participate in our government. I knew how important this was to all of us, but the reality of what I was about to do didn’t sink in until I looked up at the committee members. In a very short amount of time, I needed to inform them about the struggles and difficulties we go through as people with Spina Bifida.

However, I didn’t want to sound like a victim of my circumstances because I love my life. One of my best friends, Tom Baroch, who passed away last November, was on my mind much of that day. I hoped my testimony honored him and others in our community who have passed away. Right after my testimony, SBA’s CEO Sara Struwe said to me, “Tom would be so proud of you right now.” My greatest hope was that my community would be proud that I represented them.

I still get emotional when I think back on that day. It was one of the most profound moments of my life. For just over five minutes I had the opportunity to do something that very few Americans will do in their lifetime. Knowing that my testimony would benefit the Spina Bifida community as a whole was a huge responsibility.

It’s been six months since I testified. Since then, 120 people joined the Spina Bifida Association on Capitol Hill for Teal on the Hill to tell our stories to Members of Congress. The Appropriations Bill for the fiscal year 2020 has yet to be passed. I hope that we will receive the $8 million we requested. We must continue to advocate and remind Congress that we are 166,000 Americans strong and it is vital to continue funding the National Spina Bifida Program that is run by the Centers for Disease Control and Prevention.

We need people with Spina Bifida and their families to participate in Teal on the Hill. Nothing sends a message to Congress better than hearing our stories directly from our own mouths.” – Donna Jones, born with Spina Bifida

Join us at next year’s Teal on the Hill, the impact of advocacy will change your life!

Photography by Redefining Spina Bifida