This is a book about the lives, struggles, issues, priorities, and rights of people with acquired (including traumatic) brain injuries. If you want to learn about what it is like for people in our brain injury community, if you want to understand the challenges that we face, or if you want to see issues from our point of view, this is the book for you. The author of this book is TBI survivor advocate Susan Hultberg. She is herself an acquired brain injury (ABI) and traumatic brain injury (TBI) survivor. She founded the Brain Injury Network, the first survivor-led-and-operated U.S. national and international acquired brain injury survivor support and advocacy nonprofit organization, in 1998. See also the Brain Injury Network official page on Facebook. Ms. Hultberg is also the moderator of several brain injury survivor online social communities.
ABOUT THE BOOK
This book will take you on a journey as to what life is like for many brain injury survivors. Some overcome brain injury injuries that make life very challenging. Still others walk a tight-rope just barely hanging onto as much of a "normal" life as they can make of it. Others live out their entire lives in reduced circumstances, sometimes even in outright poverty, and that may include living life in a homeless shelter. On the other hand, it may perhaps mean existing in a dreary nursing facility where they get little, if any, rehabilitation or life-affirming activities that would make their lives a bit more enjoyable and productive.
In addition to describing brain injury survivors, the book explores many issues of importance to the brain injury survivor community. Topics range from an explanation of our survivor priorities and our human rights concerns to individual and collective efforts to affect policy change for our community. And when it comes to the policy and human rights concerns of our community, the author doesn't pull any punches. She has no problem evaluating some of the brain injury system stakeholders, such as the medical community, government departments, and service provider entities. The author also makes recommendations as to how providers and policy makers can improve their diagnostic criteria, service delivery, or programming in order to benefit the survivor community.
Some additional topics in the book include: how to be a valuable survivor brain injury advocate, why children shouldn't engage in dangerous sports such as tackle football, and why people with brain injuries should never post on public (open-access) online social communities and web sites. Global prevalence and incidence of traumatic brain injuries, the safety net for survivors, and guarding against online harassment and bullying are discussed. Protective laws and policies recommended by the Brain Injury Network are enunciated.
Brain injury is a significant topic in society. There are vast numbers of human beings with acquired brain injuries (ABI's) from trauma, illness, stroke, tumor, or anoxic injury living on this earth. There are millions upon millions of us.
We individuals with brain injuries have many unheralded issues. Our numerous challenges need to see the light of day and many do in this book. The book also showcases a particular group of brain injury survivors who have chosen to be independent brain injury survivor advocates for our community. They work collectively on a brain injury survivor community agenda at the Brain Injury Network all-survivor-advocacy nonprofit organization.
Additionally, this book elaborates on other individuals with brain injuries who have become brain injury survivor leaders and spokespeople. There are many survivor leaders in our community. Numerous individuals with brain injuries have made contributions over the years, and it is time to acknowledge them. The author attempts to do that in the book by highlighting a cross-section of the individuals who are making a difference in and for our community. Dozens of individuals are mentioned.
And further, the book delineates our human rights and gives many examples of human rights issues that specifically pertain to our community. There is material explaining how we live, how we are diagnosed, how we look for services, how we are stigmatized, and how we are victimized. In spite of great odds, the book also makes clear that often individuals in our community prevail, and what is more, we stand up to help other individuals with brain injury as well.
The author, a TBI survivor, also manages with difficulty to talk about her own ordeal. She had her own TBI in 1985. She has lived post-TBI for over 25 years now. She didn't quite have an MTBI (mild traumatic brain injury), nor did she have a severe TBI. Her injury fell somewhere in the middle. (Some call that a moderate TBI.) She discusses the accommodations she made in life. For example, she describes how she modified her lifestyle and living environment so that she could go on in spite of some TBI-engendered limitations. Her ultimate outcome was that she was eventually able to reengage in society. She hopes she was even able to make a bit of a difference in this world for others with acquired (which includes traumatic) brain injuries. Read the book and make up your own mind.
Brain Injury Advocates by Susan C. Hultberg. Copyright © 2012. All Rights Reserved.