Analysis: The Power of Storytelling and Why it Matters Now More Than Ever

Photo by iStock.

As a parent of a child who has medically complex conditions, I’m afraid of what the second Trump administration means for children and youth with special healthcare needs. We don’t know everything that will happen yet, but we have every reason to believe that major cuts to Medicaid — known in California as Medi-Cal — are on the horizon. That would be devastating to children like my son, who depends on Medicaid to pay for the medical care and equipment that keep him alive.

Healthcare and disability rights advocates are gearing up to make sure politicians understand that there is no way to cut Medicaid without hurting people who need care. Sharing real people’s stories will be key to that effort. I’m afraid– but I also know that storytelling has real power, and I want to encourage families to use the power of storytelling to save Medicaid.

My son James is 13. He’s in eighth grade and he’s thriving. He recently fought with his school counselor to be bumped up to honors math because he kept finishing his work too quickly in regular math. He’ll be singing and dancing in his school musical, “The Drowsy Chaperone,” this month. His singing voice really makes my mom heart proud. He’s also an advocate for other children with disabilities, including traveling to Washington, D.C. with me last summer to speak at an event commemorating a key piece of disability legislation. 

I never could have imagined any of this when James was small. After he was diagnosed with a rare genetic syndrome as a baby, we didn’t know if he would even be able to speak. James has a tracheostomy, a surgically placed hole in his neck, held open by a plastic tube. This makes it difficult to speak because the tube disrupts the normal passage of air though the vocal chords. The fact that James did learn to speak, thanks to years of speech therapy, is a big deal. That he’s able to sing too is mind blowing. 

Yet I think the most amazing thing about James using his voice is that people listen. Last summer, he spoke to an audience of a few hundred people about how the 1999 Supreme Court decision Olmstead v. L.C laid the groundwork for him to grow up at home instead of in an institution. He’s comfortable in front of an audience, and he speaks with the confidence of a child who has never not been listened to. James is an Olmstead success story – he spent most of the first year of his life in an institution, he’s able to access nursing care at home because Medicaid pays for it. It was important for him to be heard, and it was equally important for the disability rights advocates to hear from a kid who shows them exactly what they’re fighting for.

As human beings, we speak and understand stories a lot better than we do laws and policies. That’s as true for regular families as it is for the politicians who make the rules. The programs that are supposed to make life work for kids like my son are really complicated. In advocacy, we’re supposed to have a short elevator pitch that we can use to quickly explain the problem and the solution. It’s easy to get bogged down in the details but the critical thing we need to communicate is that Medicaid pays for the care that makes it possible for medically complex kids to live their best lives. 

I became aware of the power of storytelling in the summer of 2017 when I began sharing James’ and our family’s story. This was before James was able to speak for himself. At the time, President Trump was in office, and one of his major goals was to repeal the Affordable Care Act (ACA) and make major cuts to Medicaid. A repeal of the ACA would have ended the law’s ban on insurance companies setting lifetime limits for how much they will spend per beneficiary. That would have been devastating for James, who hit the dollar amount that would have been his lifetime limit when he was only a few months old. I thought that there was no way Americans really wanted the 6-year-old son of a cop and a schoolteacher to lose his health insurance forever because of the medical care he got as an infant. So I started speaking about it.

An important part of storytelling is being vulnerable, especially when we’re trying to explain to legislators that if they cut the programs that pay for care, kids won’t get what they need. It seems like that should be obvious, but when legislators get used to seeing programs in dollar amounts rather than as helping people, it’s easy for them to lose track of the real human lives at stake. The first time I talked to a reporter about James was in 2017 for the Fresno Bee. I felt really exposed being on the front page of the newspaper, but it was also an effective way to show how repealing the ACA would impact real families. As a result of the story, I met other families doing the same thing – and we worked together to tell more stories that help people understand that their loved ones depend on Medicaid.

Another thing I’ve learned about storytelling is that it’s easy to accidentally condense the facts into something that evokes pity and not pride. James is a medically complex child who depends on a ventilator that breathes for him at night and he needs round-the-clock care to stay alive. Telling that story on a surface level makes it something less than what it is. James’ story isn’t a sad story, it’s a success story of a system that (mostly) works. Over time, I’ve honed the story I tell about James to emphasize this point.

For the past decade, I’ve been involved with Little Lobbyists, a group of families that began going to the Capitol in person with their medically complex children during the first Trump presidency to try to convince legislators to save the ACA. Over the past eight years, Little Lobbyists has expanded to push for policies that make life work for kids with complex medical needs. 

When I started talking about James, he was in kindergarten. He couldn’t consent to being in the public eye. He was a kid who brought a bag of Transformers to play with while his mom stood up to speak at meetings and conferences. I rationalized violating his privacy because the stakes were so high. We needed to save Medicaid and the ACA… and we did! Congress voted down ACA repeal in 2017 in large part because of stories from people whose lives were on the line. 

James is a teenager now – that means he gets veto power over what parts of his life I write about. It also means he gets to tell his own story and build connections with other children and adults with disabilities, as he did last summer in Washington, D.C.

What I now realize is that the fight to save Medicaid never actually ends. Medicaid needs more funding, not less, as some politicians seem to be pushing for.  It also needs that funding to be directed towards getting people with disabilities care in their own homes so they can live full lives and participate in the community. And we cannot allow this administration to turn the clock back on the ACA.

I’m looking toward 2025 with a little bit of frustration but also with a lot of hope. There are two basic modes for advocacy: fighting against budget cuts that will make things worse and fighting for policy changes that will make things better. We need to keep telling our stories and with more urgency because the stakes are higher. When I talk to families of kids who have complex medical needs who are new to advocacy, I explain that they’ve actually been doing advocacy all along. Making the system work – even just for one child – is advocacy. Talking about how your family figures out a way to cut through all the red tape and live a life of joy is advocacy. Now, they just need to scale it up. 

Tips for telling your family’s story:
Start small. Talk to your family and friends about what MediCal does for your child.

Keep it simple. Even though the paperwork can get complicated, the most important thing that MediCal does is make it possible for disabled kids to live their best lives.

Talk to friendly faces. I started out with public speaking in my church and later with interfaith groups, because that’s where I felt comfortable.

Talk to the other side. Voters on both sides of the aisle know that MediCal is important for disabled kids. We need to make sure legislators know this.

Build community. At the state level, Health Access California is gathering stories. The Arc, an advocacy group for people with intellectual and developmental disabilities, has a storytelling toolkit with tips on how to tell your story. Little Lobbyists is also gathering stories from families with medically complex children.

Jennifer McLelland is the California Health Report’s disability rights columnist. She also serves as the policy director for home- and community-based services at Little Lobbyists, a family-led group that advocates for and with children with complex medical needs and disabilities.

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