Stories from a "Silent Epidemic": Oral History Project Counters Myths About Traumatic Brain Injury

Three years ago Stephen, then 21 years old, and several of his friends were leaving a rock concert and making the drive home from Nevada to Colorado. They discussed spending the night somewhere, but one friend said he was awake enough and would drive. Stephen lay down in the back of his friend's Volvo station wagon and went to sleep. That was the last thing he remembered for several weeks. Eyewitnesses said they saw the Volvo run off the road and flip multiple times. Stephen says, "I was in a coma for a week. I broke everything — everything."

Imagine for a moment how your life could be completely altered by the sudden onset of a brain injury. In an instant your world is shattered and you are left to pick up the pieces, perhaps isolated and without support. Your voice is silenced as you struggle through a society that often lacks the knowledge and resources to aid in your recovery.

This is the reality for many of the approximately 1.4 million Americans who sustain a traumatic brain injury (TBI) each year (Langlois, Rutland-Brown, & Thomas, 2005). Lack of education and public awareness has resulted in TBI being labeled the "silent epidemic" (Harris, 2000). Through The Krempels Brain Injury Foundation (TKBIF) Oral History Project, survivors of brain injury are breaking the silence by telling their stories to increase awareness and educate the public about TBI.

TKBIF, based in Portsmouth, NH, is a nonprofit organization dedicated to improving the lives of people living with brain injury from trauma, tumor, and stroke. The foundation developed SteppingStones, a community-based health and wellness program through which survivors of brain injury can find friendship and learn life skills as they rebuild their lives.

SteppingStones members have started to record their stories to spread the word about the significant impact that brain injury has on the daily lives of survivors and their families. Interviews for the Oral History Project are conducted by members of SteppingStones and then digitally edited and uploaded to the TKBIF Web site (see the sidebar posted in The ASHA Leader online).

The Oral History Project also benefits from a reciprocal relationship between TKBIF and the School of Health and Human Services at the University of New Hampshire. Student interns from the Departments of Communication Sciences and Disorders (CSD) and Occupational Therapy (OT) have the opportunity to learn about brain injury as they work closely with SteppingStones members in the process of recording oral histories. The graduate and undergraduate students lend assistance with cognitive-linguistic and fine-motor needs. Recently, a well-coordinated effort between Jamie, a CSD student intern, and Jim, a caregiver, enabled Jared, a SteppingStones member who is non-verbal and experiences a number of physical challenges, to tell his story through an augmentative and alternative communication system.

"The Oral History project was a big deal for me," Jared said. "I was able to tell my story so other people like me know there is life after brain injury and they should never give up."

Clinical Benefits

The Oral History Project provides a number of clinical and academic benefits for CSD and OT students. First, the oral histories give clinicians greater insight into the recovery process. Many of the stories reflect on the rehabilitation process and report which aspects of physical, occupational, and speech-language treatment were most helpful and which were not so helpful. For example, Barb, an oral history interviewee, indicated that her speech-language pathologist required her to keep a journal throughout the course of treatment. Through this activity she was able to understand her own feelings and gain awareness of the language skills she most needed to address. Subsequently, Barb is now using her journal to write a memoir chronicling her rehabilitation experience.

Clinicians also can use oral histories to offer support, education, and a sense of hope to patients and their family members during the treatment process. Survivors of TBI and their family/caregivers demonstrate psychosocial changes, such as depression, following TBI and these feelings tend to worsen over time (Fleminger, Oliver, Williams, & Evans, 2003). In addition, in spite of recent improvements, the general public continues to have misperceptions about TBI and the rehabilitation process (Hux, Goeken, & Schram, 2005). Knowing what to expect after an injury allows families and survivors to advocate for themselves in a more productive and efficient manner. For clinicians, eliminating misconceptions and easing emotional burdens allows them to provide more effective service to their clients.

In the academic setting, oral histories can provide professors and supervising clinicians with an effective tool for educating students in allied health professions about the effects of TBI. Students of health-related professions, including speech-language pathology, may have poorer attitudes towards persons with disability compared to persons without disability (Tervo, Palmer, & Redinius, 2004). By discussing advocacy issues with students early in their academic training, it may be possible to promote a more positive view of disability and improve the rehabilitation process.

Penny, a CSD student intern at SteppingStones, reflected on her exposure to the oral histories. "We tend to make one-dimensional assumptions about a person with a brain injury," she said. "We don't consider what the ripple effects are in a survivor's life or the lives of their family."

Indirectly, community members as well as students at other academic institutions are learning about the challenges faced by survivors through the oral history project. A database of the oral histories has been compiled at the University of New Hampshire's Dimond Library and several public libraries throughout the Seacoast region in Maine and New Hampshire.

Several research studies are underway to investigate the impact of oral histories on educating students, clinicians, survivors, and the general public about the effects of brain injury.

Breaking Down Barriers

The main objective of the oral history project is to open up the lines of communication about TBI and promote an understanding that breaks down barriers. The Oral History Project can be used as an effective tool in reducing myths and misconceptions about this silent epidemic. Visit www.krempelsfoundation.org for more information.

Michael Fraas is an assistant professor of communication sciences and disorders at the University of New Hampshire. He is interested in community-based programs for adults with acquired brain injury and in computer-based cognitive rehabilitation. Contact him by e-mail at michael.fraas@unh.edu.

Margaret Calvert is currently a graduate student in communication sciences and disorders at the University of New Hampshire. She is interested in cognitive deficits associated with acquired brain injury and in researching the attitudes and beliefs towards people with brain injury. Contact her by e-mail at mcalvert@cisunix.unh.edu.