Most health care conferences have speakers and presentations and, sometimes, stories. The 2018 What’s the Fix? Conference had all that, but the biggest difference was the people presenting. The presenters were patients, caregivers and patient advocates—people who are driven by passion. A passion to live and a passion to help others live better lives. These are people who show that change is possible. As one speaker said:
“we need to show empathy. We need to show people we care.”
The second half of this year’s conference showed the power of community to drive change. This blog posts shares some of the highlights that I took away from the event.
A sheriff, a priest and a mental health advocate walk into a conference. Sounds like a joke, but that’s what happened in the afternoon mental health panel at #WTFix. Karen Ranus, Sheriff Sally Hernandez and Father Charlie Garza each came to be mental health advocates to help family, friends and community.
They all know the stigma that silences good people—people who provide support for other health-related issues. “We don’t have anything to be ashamed of,” says Karen Ranus, mental health advocate with NAMI, the largest grassroots organization dedicated to building better lives for millions of Americans affected by mental illness. She shared her journey of healing after struggling with her own feelings about mental illness when her daughter became ill.
Panelist Sheriff Sally Hernandez noticed 33% of people in the Travis County Texas Correction Facility have diagnosed mental illness and asked herself how to turn incarceration into an opportunity for wellness. Her journey led her to run for sheriff and collaborate with NAMI Austin.
Father Charlie Garza shared his personal and family struggles with mental illness. He was called to help others and switched from a computer science major to counseling and then, felt his faith was a powerful way to heal people too and that led him into ministry.
But for each of them, community, faith and empathy are the keys to improving mental health in the U.S. when clinical care accounts for only 20% of overall health outcomes.
Bodo Hoenen watched helplessly when his five-year-old daughter Lorelei came down with a polio-like syndrome. She lost 60-70% of her strength and her left arm was completely paralyzed. Through online research Bodo and his wife connected with other parents of children with the same disease—most weren’t recovering.
They wanted to know what else they could do. Bodo found information on the internet about researchers using exoskeletons using muscle signals to get movement back for adults. But, no one was helping kids. Bodo and his daughter came up with their own 3D-printed design to try to use her existing muscle to control a robotic exoskeleton. They crowdsourced a solution with friends from around the world to build, program and test a prototype for Lorelei.
It took a long time for it to work, but it did. And over time, she’s been able to regain movement in her arm. Bodo and Lorelei are helping other kids too. They’ve documented all their work and shared it online so other children can benefit.
So, after all that, what does Lorelei want to be when she grows up? A superhero! Well, #WTFix has already proclaimed she is one.
By Us, For Us, About Us: Creating a More Just and Loving World
Dealing with health care issues is challenging enough. What about when you’re also dealing with single parenthood, poverty, and discrimination? How do you get healthy and stay healthy? For three women, and good friends, they knew the answer to breaking down the barriers was through community. Paula X. Rojas, Kellee Coleman and Jeanette Monsalve founded Mama Sana Vibrant Woman in Austin, Texas.
Their adventure in reversing the challenges presented by the social determinants of health (SDOH) started simply, sharing rides to job groups and providing meals to help one another get job training. They found power helping the most vulnerable—low-income women of color who are pregnant. They are helping those women feel empowered at one of the most pivotal times in their lives—becoming mothers. They’ve helped many mothers-to-be find birth services and alternatives, such as using midwives, to improve health outcomes.
The trio isn’t just helping new moms be healthy and rise to the challenge of parenting, they are fighting the invasive government systems don’t trust benefit recipients and that make just surviving a challenge. For example, they helped eliminate a law that made incarcerated women wear shackles during childbirth. As the trio of powerful women shared, “the system is broken”, but they are fighting against the complexity and meager services to empower women, some who have never had this kind of support before.
What happens when a doctor comes to the realization that they aren’t the best role to have the primary relationship with patients in the health care system? Great opportunity to improve a broken system. Dr. Toyin Ajayi shared the powerful stories of people dismissed by the system and clinical professionals challenged by non-clinical issues in health care. Her powerful stories focused on the imperative to addressing the stigmas of poverty, skin color or diminished mental capacity on the ability of people to get proper care, and the critical importance of basic communication with patients. Most people aren’t clinical experts, they need help to understand their health, not confusing medical jargon.
Clinical professionals usually don’t understand the daily juggle people undergo in their day-to-day lives. Dr. Ajayi says, “we strip people of their humanity in health care…undermining the principles of patient-provider partnership.”
She pointed out the truth about health care today. “We look to a magic bullet solution,” Dr. Ajayi notes. “But, there is none.” She says, it requires digging in. Change in health care requires connecting with other human beings at the most vulnerable times in their lives. We need to rally our communities.
Hear stories from the 2018 What’s the Fix Conference speakers in their own words, watch the video replays of all the Conference sessions.