Hearing the Brain Injury Voices Key to Improving Care for Brain Injury

I have prioritized advocacy and education about brain injury throughout my career as a brain injury lawyer. The web part of that began with https://tbilaw.com in 1996 and http://waiting.com in 1997.  https://tbilaw.com was the first major treatment of brain injury and law on the internet and http://waiting.com was the first significant page ever directed towards the caregivers of someone who was in a coma. Included in waiting.com was the Bridge from Despair, which was the first collection of brain injury stories online: http://www.waiting.com/waitingbridge.html

Yet, over the years my frustration and (my clients frustration) that the voices of brain injury were not being heard or believed by the medical professionals has grown. Diagnosing and understanding brain injury disability is not about what is shown by neuroimaging, but about the application of clinical wisdom to the individualized facts of the injury and deficits. The only way that a professional can achieve that wisdom is by listening to the TBI Voice.

I launched http://tbivoices.com to fill the void of the missing TBI story. Through the TBI Voices initiative, we are providing an internet archive of brain injury voices. The goal is to create a comprehensive and consistent treatment of the subjective aspects of TBI. Each story will include the voice of the survivor, those who knew the survivor before and after the injury, the context injury and the nature of the treatment and disability. If this archive can become a chorus of voices, it may influence the diagnosis and treatment of brain injury in a way that current research – that is based upon objective measurement of an injury that is exceedingly hard to measure and almost impossible to quantify – cannot.

To date, we have provided a platform for 14 brain injured people to tell his or her story. But unlike most survivor stories online, each of these stories has a similar structure, is an in-depth treatment of the injury, the severity of the injury, the rehabilitation and recovery process and current disability AND ability. http://tbivoices.com is in some way the flipside of the Bridge from Despair of waiting.com as it is a page filled with hope, a page filled with comebacks, a page of belief in miracles.

Below is the Table of Contents of stories on http://tbivoices.com, but this is not a static list. Each day we post another part of a story on http://tbivoices.com/blog and every 15 days or so begin another story. What is also unique about http://tbivoices.com is that you can actually hear the survivor’s voice as the entire interview is posted on Youtube at http://youtube.com/tbivoices

I hope that through this vehicle, we can provide a place where the brain injury community can be heard.

Attorney Gordon Johnson