Expert Outlook: Teaching About Brain Injury Through Storytelling

By Tom Grady, Director of Advocacy & Public Affairs, Brain Injury Alliance of New Jersey

Many people are not aware of brain injury, let alone able to empathize with a person impacted by it. This is why a person with brain injury, their loved ones and their healthcare team need to think of themselves as “teachers” of brain injury in order to advocate effectively. One element of this type of teaching is storytelling.

The use of storytelling is an effective way to communicate, illustrate and advocate. When one tells a personal story, facts are readily available and the flow of the communication is seamless. This conveys a sense of authenticity, sincerity and honesty that can lead to increased trust—a means to build constructive relationships that benefit the brain injury survivor.

Years ago, the Brain Injury Alliance of New Jersey worked to enhance the Traumatic Brain Injury Medicaid (TBI) Waiver program. This entailed many tactics, including meeting with elected officials, encouraging others to join our effort and testifying before budget committees in the State Senate and General Assembly.

Part of our advocacy team included a father and daughter. The daughter was unable to communicate, but the father was. Both of them joined me to testify before the Senate Budget and Appropriations Committee. I went first and spoke about what the Waiver did, its services and why adding slots would benefit the state fiscally and, most importantly, people with brain injury. This information was certainly important to policymakers while they were deciding whether to approve this funding—in the amount of $1.8 million. My presentation was half of the testimony. The other was the father presenting why the Waiver was important to people impacted by brain injury.

Their presentation sealed the deal.

The father spoke of his daughter’s brain injury journey, namely, the challenges. He also talked about the value the Waiver program provided. Members of the Committee were transfixed by his story, clearly moved by how brain injury had affected this family. After the hearing, the late Sen. Glenn Cunningham approached the father and daughter to offer any assistance he could provide—and he was not their senator. Their story is just one example of how storytelling can be used to advocate effectively. By the way, the $1.8 million was approved to enhance the Waiver.